Paliative Caew Book 1 PDF

Textbook of
Palliative Nursing,
Second Edition
Betty R. Ferrell, RN, PhD, FAAN

Nessa Coyle, RN, PhD, FAAN,
Editors
OXFORD UNIVERSITY PRESS

Textbook of Palliative Nursing
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This page intentionally left blank
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SECOND EDITION
EDITED BY
Betty R. Ferrell, RN, PhD, FAAN

Research Scientist
Department of Nursing Research and Education
City of Hope National Medical Center
Duarte, California
Nessa Coyle, RN, PhD, FAAN

Pain and Palliative Care Service
Memorial Sloan-Kettering Cancer Center
New York, New York
1
2006
1
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Library of Congress Cataloging-in-Publication Data

Textbook of palliative nursing / edited by Betty R. Ferrell and Nessa Coyle. 2nd ed.
p. ; cm.
Includes bibliographical references and index.
ISBN-13: 978-0-19-517549-3
ISBN 0-19-517549-2
1. Palliative treatment. 2. Nursing. 3. Terminal care.
[DNLM: 1. Nursing Care. 2. Palliative Care. 3. Terminal Care. WY 152 T355 2004] I. Ferrell, Betty.
II. Coyle, Nessa.
RT87.T45T49 2004
616'.029dc22 2004020497
9 8 7 6 5 4 3 2 1
Printed in the United States of America
on acid-free paper
fore words
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Dame Cicely Saunders, OM, DBE, FRCP Palliative care stems from the recognition of the potential at
Chair the end of life for discovering and for giving, a recognition that
St. Christophers Hospice an important dimension of being human is the lasting dignity
Syndenham, London and growth that can continue through weakness and loss. No
United Kingdom member of the interdisciplinary team is more central to mak-
ing these discoveries possible than the nurse. Realizing how lit-
tle had been written and even less studied in this eld, Peggy
Nuttall, a former nursing colleague and then editor of the Nurs-
ing Times in London, invited me to contribute a series of six
articles on the care of the dying in the summer of 1959.1 A reg-
istered nurse and qualied medical social worker, I had trained
in medicine because of a compulsion to do something about
the pain I had seen in patients and their families at the end of
life. During 3 years as a volunteer nurse in an early home for
such patients, I had persuaded the thoracic surgeon, Norman
Barrett, for whom I was working, to follow up a few of his
mortally ill patients both there and in their homes. Go and
read medicine, he said. Its the doctors who desert the dying,
and theres so much more to be learned about pain. Youll only
be frustrated if you dont do it properly, and they wont listen
to you. He was right and I obeyed. After 7 years work, the rst
descriptive study of 1100 patients in St. Josephs Hospice, Lon-
don, from 1958 to 19652 was coupled with visits to clinical pain
researchers such as Harry Beecher in Boston and many U.S.
homes, social workers, and nurses in 1963. This visit included
an all-important meeting with Florence Wald at Yale. A prodi-
gious program of fundraising letters, professional articles, and
meetings led to the opening of St. Christophers Hospice in 1967,
the rst inpatient, home care, research, and teaching hospice.
All of those early contacts and countless other interested peo-
ple led to the hospice movement and the palliative care that
developed within and from it.
Nurses were the rst to respond to this challenge and
remain the core of the personal and professional drive to
enable people to nd relief, support, and meaning at the end of
their lives. All of the expertise described in this important col-
lection is to this end. The window to suffering can be a window
v
vi Forewords
to peace and opportunity. The nurse, in her or his skilled com-

petence and compassion, has a unique place to give each per-
son the essential message, You matter because you are you
and you matter to the last moment of your life. We will do all
we can to help you, not only to die peacefully but to live until
you die.3
Dame Cicely Saunders died in July 2005. The editors and all
nurses in hospice and palliative care are grateful for her life con-
tributions.
references
1. Saunders CM. Care of the dying. Nursing Times reprint. London:

Macmillan, 1976.
2. Clark D. Total pain, disciplinary power and the body in the
work of Cicely Saunders, 195867. Soc Sci Med 1999;49:727736.
3. Saunders C. Care of the dying. 1. The problem of euthanasia.
Nurs Times 1976;72:10031005.
Florence Wald, RN, FAAN Nurses of my generation in the second half of the twentieth cen-
Branford, Connecticut tury were fortunate to be part of the hospice movement and to
respond to an eager public with an alternative way of care for
the dying. Medical sociologists studies of hospital culture
showed what many nurses already knew, that when technolog-
ical intervention failed to stop the course of disease, physicians
could not see that the treatment was futile or join the patient
in a willingness to cease.
By 1950, nurses began to carry out studies as principal inves-
tigators and were on their way to being respected by other dis-
ciplines. Two outstanding leaders were Hilde Peplau and
Virginia Henderson, both educated nurses in clinical practice
who established a foundation for the advanced nurse practi-
tioner to be a valued member of an interdisciplinary team.
This surfaced rst in psychiatric nursing, but as hospice
care came into being, the nurse became a pivotal part of the
interdisciplinary team. Hospice nursing, Virginia Henderson
said, was the essence of nursing; volunteers came quickly
into hospice care, proving Hendersons precept and giving the
lay individual the necessary strength, will, and knowledge to
contribute to a peaceful death.1
Physicians in the forefront of medical ethics, such as Edmund
Pellegrino and Raymond Duff, encouraged physicians to recast
their roles as decision makers and communicators so that the
whole team could keep the patients values and the families
wants the prime concern.
The works of those who have brought alternative therapies
into use, for example, Martha Rogers and Barbara Dossey,
have added to the spiritual dimensions of care. The growth of
the religious ministry movement and the creative addition of
the arts and environment round out the cast of contributors.
Reviewing the progress we nurses have made allows us to
proceed more effectively.
Forewords vii
reference
1. Henderson V. Basic Principles of Nursing Care. London: Inter-

national Council of Nurses, 1961:42.
Jeanne Quint Benoliel, DNSc, FAAN At the end of the Second World War in 1945, people in Western
Professor Emeritus societies were tired of death, pain, and suffering. Cultural
Psychosocial and Community Health School of Nursing goals shifted away from war-centered activities to a focus on
University of Washington progress, use of technology for better living, and improve-
Seattle, Washington ments in the health and well-being of the public. Guided by
new scientic knowledge and new technologies, health care
services became diversied and specialized and lifesaving at all
costs became a powerful driving force. End-of-life care was lim-
ited to postmortem rituals, and the actual caregiving of dying
patients was left to nursing staff. Palliative nursing in those
days depended on the good will and personal skills of individ-
ual nurses, yet what they offered was invisible, unrecognized,
and unrewarded.
Thanks to the efforts of many people across the years, end-
of-life care is acknowledged today as an important component
of integrated health care services. Much knowledge has accrued
about what makes for good palliative care, and nurses have
been in the forefront of efforts to improve quality of life for
patients and families throughout the experience of illness.
This book is an acknowledgment of the important part played
by nurses in helping patients to complete their lives in a con-
text of care and human concern.
p re face
o]
For Every NurseA Palliative Care Nurse
The rst edition of Textbook of Palliative Nursing was pub-

Betty Rolling Ferrell, RN, PhD, FAAN lished in 2001. Since that time the eld of palliative nursing has
Research Scientist
evolved quite dramatically.
City of Hope National Medical Center
One major advance has been the extension of the principles
of palliative care into all settings of care, as reected in these
Nessa Coyle, RN, PhD, FAAN pages. Initially found only in hospice units or oncology units,
Pain and Palliative Care Service
or in settings that focused on the care of individuals with
Memorial Sloan Kettering Cancer Center
HIV/AIDS, palliative nursing is now practiced in emergency
departments, intensive care units, neonatal intensive care units,
renal dialysis centers, pediatric care facilities, and many other
settings.
In addition, much has happened since the rst edition of
this textbook to bring long-overdue attention to the area of
pediatric palliative care. Of great importance has been the
Report by the Institute of Medicine on Pediatric Palliative
Care. This second edition of the Textbook of Palliative Nursing
thus includes an expanded section on pediatric palliative care.
This enhanced section includes new chapters on pediatric be-
reavement as well as care in the neonatal intensive care unit.
The authors of these chapters are leaders in the eld who have
lived the work of caring for children and their families as well
as contributed to the evolving literature, research, and model
programs. We are greatly indebted to them for their leader-
ship, and hope that this expanded section will be a valuable
resource for all nurses in palliative care.
The basic assumptions of palliative nursingthe principles
of attention to physical pain and suffering as well as existential
distress; inclusion of the family as the unit of care; extension of
care into bereavement; interdisciplinary care; and many other
basic tenets of the eldare applicable across the very diverse
profession of nursing. For this reason we believe that every nurse
should be a palliative care nurse. We therefore dedicate this sec-
ond edition of the Textbook of Palliative Nursing to every nurse,
for each of us will have the opportunity to provide comfort and
compassion to patients in our everyday practice. May we all
strive to advance our knowledge and improve the quality of care
in serving patients and families faced with serious illness.
x Preface
o] the many other nurses who have brought the eld of palliative
About the Forewords care to the forefront, and whose dedication will provide a
foundation for us in the future.
On the previous pages readers will nd three Forewords, writ-
ten for the rst edition by three pioneers in the eld of pallia-
tive nursing: Dame Cicely Saunders, founder of the modern o]
hospice movement; Florence Wald, founder of the rst hospice Acknowledgments
in America; and Jeanne Quint Beneliel, pioneer in psycho-
social nursing and the role of nursing in caring for the termi- The editors acknowledge the assistance of Megan Grimm, MPH,
nally ill. We have reprinted the Forewords from these pioneers who served as our research assistant throughout the process of
in the second edition because we believe that their legacy is an this second edition. Her commitment and attention to detail
enduring contribution to all that has come to be known as pal- were greatly appreciated and are reected on every page of this
liative nursing care. We are indebted to these women and to text.
contents
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Forewords v
Dame Cicely Saunders, Florence Wald, and Jeanne Quint Benoliel
Contributors xv
Part I o]
General Principles
1 Introduction to Palliative Care Nursing Care 5

Nessa Coyle
2 Hospice Palliative Care: A Model

for Quality End-of-Life Care 13
Kathleen A. Egan and Mary J. Labyak
3 Principles of Patient and Family Assessment 47

Elaine Glass, Douglas Cluxton, and Patrice Rancour
4 Communication in Palliative Care 67

Constance M. Dahlin and David F. Giansiracusa
Part II o]
Symptom Assessment and Management
5 Pain Assessment 97
Regina Fink and Rose Gates
6 Pain at the End of Life 131

Judith A. Paice and Perry G. Fine
7 Fatigue 155
Paula R. Anderson and Grace E. Dean
8 Anorexia and Cachexia 169

Charles Kemp
9 Nausea and Vomiting 177

Cynthia King
10 Dysphagia, Xerostomia, and Hiccups 195

Constance M. Dahlin and Tessa Goldsmith
xii Contents
11 Bowel Management: Constipation, 27 Bereavement 531

Diarrhea, Obstruction, and Ascites 219 Inge B. Corless
Denice Caraccia Economou
28 Supporting Families in Palliative Care 545
12 Hydration, Thirst, and Nutrition 239 Betty Davies
Pamela Kedziera and Nessa Coyle
29 Planning for the Actual Death 561
13 Dyspnea, Death Rattle, and Cough 249 Patricia Berry and Julie Grife
Deborah Dudgeon
14 Urinary Tract Disorders 265 Part IV o]

Mikel Gray and Fern Campbell Spiritual Care
15 Lymphedema Management 285
Jean K. Smith 30 Spiritual Assessment 581
Elizabeth Johnston Taylor
16A Skin Disorders: Pressure UlcersAssessment
and Management 301 31 Spiritual Care Interventions 595
Barbara M. Bates-Jensen Charles Kemp
16B Skin Disorders: Tumor Necrosis, 32 Meaning in Illness 605

Fistulas, and Stomas 329 Tami Borneman and Katherine Brown-Saltzman
Barbara M. Bates-Jensen, Susie Seaman, 33 Reecting on the Journey: A Family Caregivers
and Lynne Early Personal Perspective 617
17 Pruritus, Fever, and Sweats 345 Ruth Yorkin Drazen
Michelle Rhiner and Neal E. Slatkin
18 Neurological Disturbances 365 Part V o]

Judith A. Paice Special Patient Populations
19 Anxiety and Depression 375 34 Cultural Considerations in Palliative Care 623
Jeannie V. Pasacreta, Pamela A. Minarik, Polly Mazanec and Joan T. Panke
and Leslie Nield-Anderson
35 Elderly Patients 635
20 Delirium, Confusion, and Agitation 401 Susan Derby and Sean OMahony
Kim K. Kuebler, Debra E. Heidrich, Catherine Vena,
and Nancy English 36 Poor, Homeless, and Underserved Populations 661
Anne Hughes
21 Sexuality 421
Margaret Anne Lamb 37 Patients with Acquired Immunodeciency
Syndrome 671
22 Clinical Interventions, Economic Outcomes, and Deborah Witt Sherman
Palliative Care 429
Patrick J. Coyne, Laurie Lyckholm, and Thomas J. Smith 38 Caring for the Drug-Addicted Patient at the
End of Life 713
23 Urgent Syndromes at the End of Life 443 Kenneth L. Kirsh, Peggy Compton, and Steven D. Passik
Ashby C. Watson
24 Sedation for Refractory Symptoms and

Part VI o]
Terminal Weaning 467
End-of-Life Care Across Settings
Patti Knight, Laura A. Espinosa, and Eduardo Bruera
25 Complementary and Alternative 39 Improving the Quality of Care Across

Therapies in Palliative Care 491 All Settings 725
Susan Berenson Marilyn Bookbinder
40 Long-Term Care 759

Sarah A. Wilson
Part III o]
41 Home Care 771
Psychosocial Support
Paula Milone-Nuzzo and Ruth McCorkle
26 The Meaning of Hope in the Dying 513 42 Hospital-Based Palliative Care 787
Mary Ersek Marie Bakitas and Kathleen Daretany
Contents xiii
43 The Intensive Care Unit 817 58 Public Policy and End-of-Life Care:
Kathleen Puntillo and Daphne Stannard The Nurses Role 1055
Colleen Scanlon
44 The Outpatient Setting 835
Anne R. Du Pen and Jeanne Robison 59 Palliative Care and Requests for
Assistance in Dying 1067
45 Rehabilitation and Palliative Care 847
Deborah L. Volker
Kathleen Michael
60 Nursing Education 1077
46 The Emergency Department 861
Denice K. Sheehan and Betty R. Ferrell
Margaret Campbell and Robert Zalenski
61 Nursing Research 1093
47 The Role of Nursing in Caring for Patients
Betty R. Ferrell and Marcia Grant
Undergoing Surgery for Advanced Disease 871
Betty R. Ferrell, Gloria Juarez, and Tami Borneman
48 Palliative Chemotherapy and Clinical Trials in Part IX o]

Advanced Cancer: The Nurses Role 881 Models of Excellence and Innovative
Virginia Sun Community Projects
62 Delivering Palliative Care in Challenging

Part VII o] Settings and to Hard-to-Reach Populations 1109
Pediatric Palliative Care Ira Byock and Jeanne Twohig
63 A Community-Based Approach to Improving the

49 Symptom Management in Pediatric Quality of Lifes End 1119
Palliative Care 895 Ira Byock and Kaye Norris
Melody Brown Hellsten and Javier Kane
64 Project Safe Conduct 1129
50 Pediatric Care: The Hospice Perspective 909 Elizabeth Ford Pitorak
Lizabeth H. Sumner
65 Harlem Palliative Care Network 1139
51 Pediatric Care: Transitioning Goals of Care in the Eleanor Canning and Richard Payne
Emergency Department, Intensive Care Unit, and
In Between 925 66 International Models of Excellence 1147
Marcia Levetown Palliative Care in Canada 1147
Carleen Brenneis and Pam Brown
52 End-of-life Decision Making in Palliative Care in Australia and New Zealand 1159
Pediatric Oncology 945 Sanchia Aranda and Linda J. Kristjanson
Pamela S. Hinds, Linda Oakes, and Wayne L. Furman Palliative Care in the United Kingdom 1165
53 Palliative Care in the Neonatal Intensive Andrew Knight
Care Unit 959 Palliative Care in Europe 1176
Carole Kenner and Sylvia McSkimming Marianne Jensen Hjermstad and Stein Kaasa
Palliative Care in Situations of Conict 1188
54 Grief and Bereavement in Pediatric Nathan Cherny and Ora Rosengarten
Palliative Care 975 Palliative Care in South America 1194
Betty Davies and Juhye Jin Marta H. Junin
55 Pediatric Pain: Knowing the Child Before You 991
Mary Layman Goldstein, Maura Byrnes-Casey,
Part X o]
and John J. Collins
A Good Death
67 Understanding a Good Death: Jamess Story 1209

Part VIII o]
Richard Steeves and David Kahn
Special Issues for the Nurse in End-of-Life Care
56 The Experience of the Nurse in End-of-Life

Appendix Palliative Care Resource List 1217
Care in the 21st Century 1011
Rose Virani and Stacey Pejsa
Mary L. S. Vachon
57 Ethical Considerations 1031 Index 1221

Karen J. Stanley and Laurie Zoloth-Dorfman
cont r ibutors
o]
Paula R. Anderson, RN, MN

Clinical Trials Coordinator
University of Texas Southwestern
Moncrief Cancer Center
Fort Worth, Texas
Sanchia Aranda, RN, BApp Sci (Adv Nurs), MN,
Cert Onc, PhD
Professor/Director of Cancer Nursing Research
Peter MacCallum Cancer Centre and School of Nursing
University of Melbourne
Melbourne, Victoria, Australia
Marie Bakitas, MS, ARNP, DNSc(c), FAAN
Adult Nurse Practitioner
Section of Palliative Medicine
Dartmouth Hitchcock Medical Center
Lebanon, New Hampshire
Barbara M. Bates-Jensen, PhD, RN, CWOCN
Adjunct Assistant Professor
University of California, Los Angeles, School of Medicine
Division of Geriatrics and Jewish Home for the Aged
Anna and Harry Borun Center for Gerontological Research
Los Angeles, California
Susan Berenson, RN, MSN, OCN
Clinical Nurse Specialist
Department of Integrative Medicine
New York, New York
Patricia Berry, PhD, APRN, BC-PCM
Assistant Professor
Co-Director, Geriatric Nursing Leadership Program
University of Utah
Salt Lake City, Utah
xv
xvi Contributors
Marilyn Bookbinder, RN, PhD Margaret Campbell RN, PhD(c), FAAN

Director of Nursing Nurse Practitioner
Department of Pain Medicine and Palliative Care Palliative Care and Clinical Ethics
Beth Israel Medical Center Detroit Receiving Hospital
New York, New York Detroit, Michigan
Tami Borneman, RN, MSN, CNS Eleanor Canning, RN, BSN
Senior Research Specialist Regional Director, Business Development
Department of Nursing Research and Education Visiting Nurse Service of New York
City of Hope National Medical Center Jericho, New York
Duarte, California
Nathan Cherny, MBBS, FRACP, FRCP
Carleen Brenneis, RN, MHSA Director, Cancer Pain and Palliative Medicine
Program Director Shaare Zedek Medical Center
Regional Palliative Care Program Jerusalem, Israel
Grey Nuns Community Hospital
Edmonton, Alberta, Canada Douglas Cluxton, MA, LPC
Project Coordinator
Pam Brown, RN, MSN Ohio Hospice and Palliative Care Organization
Director Community Educator
Seniors Health and Palliative Care HomeReach Hospice
Calgary Health Region Columbus, Ohio
Calgary, Alberta, Canada
John J. Collins, MBBS, PhD, FRACP
Katherine Brown-Saltzman, RN, MA Head
Executive Director Department of Pain Medicine and Palliative Care
University of California, Los Angeles, Ethics Center Childrens Hospital at Westmead
Assistant Clinical Professor Sydney, Australia
University of California, Los Angeles, Medical Center
University of California, Los Angeles, Peggy Compton, RN, PhD
School of Nursing Associate Professor
Los Angeles, California University of California, Los Angeles, School of Nursing
Los Angeles, California
Eduardo Bruera, MD
Chair, Department of Palliative Care and Inge B. Corless, RN, PhD, FAAN
Rehabilitation Medicine Professor
University of Texas MD Anderson Cancer Center Graduate Program in Nursing
Houston, Texas MGH Institute of Health Professions
Boston, Massachusetts
Ira Byock, MD
Professor of Anesthesiology and Community Nessa Coyle, RN, PhD, FAAN (Editor)
and Family Medicine Pain and Palliative Care Service
Dartmouth Medical School Memorial Sloan-Kettering Cancer Center
Director of Palliative Medicine New York, New York
Dartmouth Hitchcock Medical Center
Patrick J. Coyne, MSN, APRN, FAAN
Lebanon, New Hampshire
Clinical Nurse Specialist for Pain/Palliative Care
Maura Byrnes-Casey, RN, MA, PNP-BC Clinical Director of Thomas Palliative Care Services
Nurse Practitioner Virginia Commonwealth University Health Care Systems
Department of Pediatrics Richmond, Virginia
Constance M. Dahlin, RN, MSN, APRN, BC, PCM
New York, New York
Palliative Care Specialist and Nurse Practitioner
Fern Campbell, RN, MSN, FNP Palliative Care Service
Pediatric Urology Nurse Practitioner Massachusetts General Hospital
Department of Urology Boston, Massachusetts
University of Virginia
Charlottesville, Virginia
Contributors xvii
Kathleen Daretany, MA, APRN, BC-PCM Nancy English, PhD, APRN

Palliative Care Nurse EducatorProject ENABLE II Clinical Faculty
Dartmouth College/Dartmouth-Hitchcock Medical Center University of Colorado Health Science Center
Center for Psycho-Oncology Research School of Nursing
Lebanon, New Hampshire Denver, Colorado
Betty Davies, RN, PhD, FAAN Mary Ersek, PhD, RN
Professor Research Scientist
Department of Family Health Care Nursing Pain Research Department
School of Nursing Swedish Medical Center
University of California, San Francisco Seattle, Washington
San Francisco, California
Laura A. Espinosa, RN, MS, CS
Grace E. Dean, PhD, RN Administrative Director of Heart and Vascular Services
Postdoctoral Fellow Memorial Hermann Hospital
School of Nursing Houston, Texas
Center for Sleep and Respiratory Neurobiology
Betty R. Ferrell, RN, PhD, FAAN (Editor)
University of Pennsylvania
Research Scientist
Philadelphia, Pennsylvania
Susan Derby, RN, MA, CGNP City of Hope National Medical Center
Nurse Practitioner Duarte, California
Pain and Palliative Care Service Perry G. Fine, MD
Memorial Sloan-Kettering Cancer Center Professor
New York, New York Department of Anesthesiology
Ruth Yorkin Drazen University of Utah
Filmmaker Pain Management and Research Center
New York, New York Salt Lake City, Utah
Deborah Dudgeon, MD, FRCPC Regina Fink, RN, PhD, FAAN, AOCN
W. Ford Connell Professor of Palliative Care Medicine Research Nurse Scientist
Queens University University of Colorado Hospital
Kingston, Ontario, Canada Denver, Colorado
Anna R. Du Pen, ARNP, MN Wayne L. Furman, MD

Palliative Care Nurse Practitioner Member
Peninsula Pain Clinic Department of Hematology-Oncology
Bremerton, Washington St. Judes Childrens Research Hospital
Memphis, Tennessee
Lynne Early, RN, MSN, ONP, OCN, CWOCN
Oncology Nurse Practitioner Rose Gates, RN, PhD(c), CNS/NP, AOCN
University of Southern California Oncology Nurse Practitioner
Kenneth Norris, Jr., Cancer Center Rocky Mountain Cancer Center
Santa Barbara, California Colorado Springs, Colorado
Denice Caraccia Economou, RN, MN, AOCN David F. Giansiracusa, MD

Manager, Pain and Symptom Management Co-Director, Pain and Palliative Care Service
Aptium Oncology Division of Psychosocial Oncology and
Los Angeles, California Palliative Care
Dana Farber Cancer Institute and Brigham and
Kathleen A. Egan, MA, BSN, CHPN Womens Hospital
Vice President Boston, Massachusetts
Hospice Institute of the Florida Suncoast
Elaine Glass, RN, MS, APRN, BC-PCM
Clearwater, Florida
Clinical Nurse Specialist
Community Director
Palliative Care at Grant Medical Center
The Center for Hospice, Palliative Care and
Columbus, Ohio
End-of-Life Studies
University of Southern Florida
Tampa, Florida
xviii Contributors
Tessa Goldsmith, MA, CCC/SLP Juhye Jin, RN, MS

Clinical Specialist Doctoral Student
Department of Speech-Language Pathology Department of Family Health Care Nursing
Massachusetts General Hospital School of Nursing
Boston, Massachusetts University of California, San Francisco
Mary Layman Goldstein, RN, MS, APRN, BC
Nurse Practitioner Gloria Juarez, RN, PhD
Pain and Palliative Service Assistant Research Scientist
Memorial Sloan-Kettering Cancer Center Department of Nursing Research and Education
New York, New York City of Hope National Medical Center
Duarte, California
Marcia Grant, DNSc, RN, FAAN
Research Scientist and Director Marta H. Junin, RN
Department of Nursing Research and Education Palliative Care Service
City of Hope National Medical Center Bonorino Udaondo Hospital
Duarte, California Palliative Care Nurse Educator
University of Buenos Aires
Mikel Gray, PhD, FNP, PNP, CUNP, FAAN
Buenos Aires, Argentina
Professor and Nurse Practitioner
Department of Urology and School of Nursing Javier Kane, MD
University of Virginia Associate Professor, Department of Pediatrics
Charlottesville, Virginia University of Texas Health Science Center, San Antonio
Medical Director, Pediatric Palliative Care Program
Julie Grife, MSN, CS, AOCN
CHRISTUS Santa Rosa Childrens Hospital
Clinical Nurse Specialist, Cancer Program
San Antonio, Texas
Froedtert Hospital
Milwaukee, Wisconsin Stein Kaasa, MD, PhD
Professor
Debra E. Heidrich, MSN, RN, CHPN, AOCN
Pain and Palliation Research Group
Consultant, Pain and Palliative Care
Department of Cancer Research and Molecular Medicine
West Chester, Ohio
Faculty of Medicine
Melody Brown Hellsten MS, APRN-BC, PNP The Norwegian University of Science and Technology
Pediatric Nurse Practitioner and The Palliative Medicine Unit
University of Texas Health Science Center, San Antonio St. Olavs Hospital
Program Coordinator Trondheim, Norway
Pediatric Palliative and Supportive Care
David Kahn, PhD, RN
CHRISTUS Santa Rosa Childrens Hospital
Associate Professor on Leave
San Antonio, Texas
School of Nursing
Pamela S. Hinds, PhD, RN, CS University of Texas at Austin
Director of Nursing Research Austin, Texas
Division of Nursing Research Visiting Scholar
St. Jude Childrens Research Hospital Institute of Anthropology
Memphis, Tennessee Department of Human Development
Tzu chi Buddhist University
Marianne Jensen Hjermstad, RN, MPH, PhD
Haulien, Taiwan
Associate Professor
University of Trondheim Pamela Kedziera, RN, MSN, AOCN
Research Coordinator Clinical Nurse Specialist
Ulleval University Hospital HF Pain Management Center
Oslo, Norway Fox Chase Cancer Center
Philadelphia, Pennsylvania
Anne Hughes, APRN, MN, FAAN
Advance Practice Nurse, Palliative Care Charles Kemp, FNP, FAAN
Laguna Honda Hospital and Rehabilitation Center Senior Lecturer
San Francisco Department of Public Health Baylor University
San Francisco, California Dallas, Texas
Contributors xix
Carole Kenner, DNS, RNC, FAAN Marcia Levetown, MD, FAAP

Dean/Professor Pain and Palliative Care Education Consultant
University of Oklahoma College of Nursing Houston, Texas
Oklahoma City, Oklahoma
Laurie Lyckholm, MD
Cynthia King, PhD, NP, MSN, RN, FAAN Associate Professor of Internal Medicine
Program Director for Nursing Research Hematology/Oncology and Palliative Care Medicine
Assistant Professor Virginia Commonwealth University School of Medicine
Public Health Services, Social Science and Public Policy Richmond, Virginia
Wake Forest University Baptist Medical Center
Winston-Salem, North Carolina Polly Mazanec, MSN, APRN, BC, AOCN
Nurse Practitioner
Kenneth L. Kirsh, PhD Safe Conduct Team
Assistant Professor University Hospitals of Cleveland
Assistant Director for Research Ireland Cancer Center
Symptom Management and Palliative Care Program Cleveland, Ohio
Division of Hematology/Oncology
Department of Internal Medicine Ruth McCorkle, PhD, FAAN
Markey Cancer Center Florence S. Wald Professor of Nursing and Director
University of Kentucky Center for Excellence in Chronic Illness Care
Lexington, Kentucky Yale University School of Nursing
New Haven, Connecticut
Andrew Knight, RN, MA
Princess Alice Hospice Sylvia McSkimming, PhD, RN
West End Land Executive Director
Esher, Surrey, United Kingdom Supportive Care of the Dying: A Coalition for
Compassionate Care
Patti Knight, RN, MSN, CS, CHPN Providence Health System
Palliative Care Unit Patient Manager Portland, Oregon
Department of Palliative Care and Rehabilitation Medicine
University of Texas MD Anderson Cancer Center Kathleen Michael, PhD, RN, CRRN
Houston, Texas Program Manager
The Claude D. Pepper Center
Linda J. Kristjanson, RN, PhD Geriatric Research Education Clinical Center
The Cancer Council of Western Australia University of Maryland
Chair of Palliative Care Veterans Administration Medical Center
School of Nursing & Public Health Baltimore, Maryland
Edith Cowan University
Churchlands, Western Australia Paula Milone-Nuzzo, PhD, RN, FAAN, FHHC
Professor and Director
Kim K. Kuebler, MN, RN, ANP-CS School of Nursing
Regional Medical Scientist Associate Dean for International Partnerships
Boehringer-Ingelheim Pharmaceuticals College of Health and Human Development
Palliative Care Nurse Practitioner Pennsylvania State University
Adjuvant Therapies, Inc. University Park, Pennsylvania
Atlanta, Georgia
Pamela A. Minarik, MS, APRN, BC, FAAN
Mary J. Labyak, MSW, LCSW Professor of Nursing
President and Chief Executive Ofcer Professor, Ofce of International Affairs
The Hospice of the Florida Suncoast Yale University School of Nursing
Largo, Florida Psychiatric Consultation Liaison Clinical Nurse Specialist
Yale-New Haven Hospital
Margaret Anne Lamb, PhD, RN
New Haven, Connecticut
Adjunct Associate Professor
Department of Nursing Leslie Nield-Anderson, APRN, BC, PhD
University of New Hampshire Private Practice
Durham, New Hampshire Geropsychiatric Consultant
Sunhill Medical Center
Sun City Center, Florida
xx Contributors
Kaye Norris, PhD Kathleen Puntillo, RN, DNSc, FAAN

Private Consultant Professor of Nursing
Kaye Norris Consulting: Research and Evaluation Department of Physiological Nursing
Missoula, Montana University of California, San Francisco
Linda Oakes, MSN, RN, CCNS
Pain Clinical Nurse Specialist Patrice Rancour, MS, RN, CS
St. Judes Childrens Research Hospital Prospective Health Care Program Manager
Memphis, Tennessee Ohio State University Faculty/Staff Wellness Program
Columbus, Ohio
Sean OMahony, MBBCh, BAO
Medical Director Michelle Rhiner, RN, MSN, NP, CHPN
Palliative Care Service Patient Coordinator/Manager
Monteore Medical Center Supportive Care, Pain and Palliative Medicine
Assistant Professor City of Hope National Medical Center
Albert Einstein College of Medicine Duarte, California
Bronx, New York Jeanne Robison, RN, MN, ARNP
Judith A. Paice, PhD, RN, FAAN Director of Medical Oncology Services
Director, Cancer Pain Program Rockwood Clinic
Division of Hematology-Oncology Spokane, Washington
Northwestern University Ora Rosengarten, MD
Feinberg School of Medicine Oncologist, Palliative Care Physician
Chicago, Illinois Department of Medical Oncology
Joan T. Panke, RN, APRN, BC-PCM Shaare Zedek Medical Center
Palliative Care Coordinator Jerusalem, Israel
Washington Cancer Institute Colleen Scanlon, RN, JD
Washington Hospital Center Senior Vice-President, Advocacy
Washington, DC Catholic Health Initiatives
Jeannie V. Pasacreta, PhD, FAAN Denver, Colorado
Private Practice Susie Seaman, MSN, NP, CWOCN
Adult and Family Integrated Mental Health Services Nurse Practitioner
Newtown, Connecticut Grossmont Hospital Wound Healing Center
Steven D. Passik, PhD Sharp HealthCare
Associate Attending Psychologist La Mesa, California
Memorial Sloan-Kettering Cancer Center Denice K. Sheehan, RN, MSN, PhD(c)
New York, New York Palliative Care Consultant
Richard Payne, MD Twinsburg, Ohio
Director and Esther Colliower Professor Deborah Witt Sherman, PhD, APRN, ANP,
Duke Institute on Care at the End of Life BC-PCM, FAAN
Duke University School of Divinity Associate Professor and Program Coordinator of the
Durham, North Carolina Advanced Practice Palliative Care Masters and
Stacey Pejsa Post Masters Programs
Coordinator New York University
Department of Nursing Research and Education New York, New York
City of Hope National Medical Center Neal E. Slatkin, MD, DABPM
Duarte, California Director
Elizabeth Ford Pitorak, MSN, APRN, CHPN Supportive Care, Pain and Palliative Medicine
Director of the Hospice Institute City of Hope National Medical Center
Hospice of the Western Reserve Duarte, California
Cleveland, Ohio Jean K. Smith, RN, MS, OCN
Lymphedema Clinical Nurse Specialist
Centura Health Penrose Cancer Center
Colorado Springs, Colorado
Contributors xxi
Thomas J. Smith, MD, FACP Catherine Vena, PhD, RN

Chairman of Hematology/Oncology and Palliative Postdoctoral Fellow
Care Medicine Woodruff Postdoctoral Instititute
Virginia Commonwealth University School of Medicine Nell Hodgson School of Nursing
Richmond, Virginia Emory University
Atlanta, Georgia
Karen J. Stanley RN, MSN, AOCN, FAAN
Nursing Consultant Rose Virani, RNC, MHA, OCN
President, Oncology Nursing Society Senior Research Specialist
Greenwich, Connecticut Department of Nursing Research and Education
Daphne Stannard, RN, PhD, CCRN, CCNS City of Hope National Medical Center
Assistant Professor Duarte, California
San Francisco State University School of Nursing Deborah L. Volker, PhD, RN, AOCN
San Francisco, California Assistant Professor
Richard Steeves, PhD, RN, FAAN The University of Texas at Austin
Associate Professor School of Nursing
University of Virginia School of Nursing Austin, Texas
Charlottesville, Virginia
Ashby C. Watson, APRN, BC, OCN
Lizabeth H. Sumner, RN, BSN Psychosocial Oncology Clinical Nurse Specialist
Adjunct Faculty Virginia Commonwealth University Medical Center
University of Chicago, Illinois Richmond, Virginia
School of Nursing
Consultant, Palliative Care Sarah A. Wilson, PhD, RN
Vista, California Associate Professor
Director, Institute for End-of-Life Education
Virginia Sun, RN, MSN Marquette University College of Nursing
Senior Research Specialist Milwaukee, Wisconsin
City of Hope National Medical Center Robert Zalenski, MD, MA
Duarte, California Palliative Medicine Consultant
John D. Dingell Veterans Hospital
Elizabeth Johnston Taylor, PhD, RN Director of Clinical Research
Associate Professor Professor, Emergency Medicine and Cardiology
School of Nursing Wayne State University School of Medicine
Loma Linda University Detroit, Michigan
Loma Linda, California
Laurie Zoloth-Dorfman, PhD, RN
Jeanne Twohig, MPA
Professor of Medical Humanities and
Deputy Director
Bioethics and of Religion
Duke Institute of Care at the End of Life
Director of Bioethics, Center for Genetic Medicine
Durham, North Carolina
Northwestern University
Deputy Director
Feinberg School of Medicine
Promoting Excellence in End-of-Life Care
Chicago, Illinois
Missoula, Montana
Mary L. S. Vachon, RN, PhD
Psychotherapist and Consultant in Private Practice
Full Professor
Departments of Psychiatry and Public Health Science
University of Toronto
Toronto, Ontario, Canada
o]
I
General Principles
o]
1o] Nessa Coyle
Introduction to Palliative Nursing Care

They said there was nothing to do for this young man who was end stage. He was restless
and short of breath; he couldnt talk and looked terried. I didnt know what to do, so I patted him
on the shoulder, said something inane, and left. At 7 AM he died. The memory haunts me. I failed to
care for him properly because I was ignorant.A young clinician who later became a palliative
care expert
Key Points I failed to care for him properly because I was ignorant
Palliative nursing reects whole person care. these are haunting words, and they are as true today as they
Palliative nursing combines a scientic approach with a humanistic were several decades earlier. Clinicians cannot practice what
approach to care. they do not know. However, the opposite is also true: Individ-
The caring process is facilitated through a combination of science, uals and their families, struggling to live in the face of progres-
presence, openness, compassion, mindful attention to detail, sive, symptomatic, and debilitating disease, can be well cared
and teamwork. for and supported throughout this process and nd meaning
The patient and family is the unit of care. and peace in the face of death. This is the essence of skilled pal-
The goal of palliative nursing is to promote quality of life across the liative nursing careto facilitate the caring process through
illness trajectory through the relief of suffering, including care of a combination of science, presence, openness, compassion,
the dying and bereavement follow-up. mindful attention to detail, and teamwork. Although we have
both the knowledge and the art to control the majority of
symptoms that occur during the last months, weeks, and days of
life, we still have much to learn about how to alleviate the psy-
chological and spiritual distress that comes with life-threatening
illness.1
o]
Shifting the Paradigm of End-of-Life Care
to Palliative Care
Advances in health care have changed the trajectory of dying.

Improved nutrition and sanitation, preventive medicine, wide-
spread vaccination use, the development of broad-spectrum
antibiotics, and an emphasis on early detection and treatment
of disease have resulted in fewer deaths in infancy and child-
hood and fewer deaths from acute illness.2,3 The combination
of a healthier population in many developed countries and
effective treatments for disease has resulted in the ability to
prolong life. This has led to both benets and challenges for
society. For example, in the United States, more than 70% of
those who die each year are 65 years of age or older. The major-
ity of these deaths, however, occur after a long, progressively
debilitating chronic illness, such as cancer, cardiac disease, renal
disease, lung disease, or acquired immunodeciency syndrome
5
6 General Principles
(AIDS).2 It is also now recognized that the palliative care o]

needs and end-of-life needs of children have long been World Health Organization Denition
ignored.4 The eld of palliative care nursing has expanded in of Palliative Care
response to these challenges. It has built on the long tradition
of hospice care and the models of excellent nursing care In recognition of the changing trajectory of dying and the
within hospice. implications for palliative care, the World Health Organiz-
ation (WHO) has modied its 1982 denition of palliative care
to the following: Palliative care is an approach to care which
o] improves quality of life of patients and their families facing
The Relationship of Hospice Care life-threatening illness, through the prevention, assessment
to Palliative Care and treatment of pain and other physical, psychological and
spiritual problems.6
The hospice model of care was developed to address the spe- The new WHO denition broadens the scope of palliative
cic needs of the dying and of their families, so long neglected care beyond end-of-life care and suggests that such an approach
by the medical system of care. The modern hospice move- can be integrated with life-prolonging therapy and should be
ment started in England in 1967, through the work of Dame enhanced as death draws near. In a similar vein, the National
Cicely Saunders and colleagues at St. Christopher Hospice in Comprehensive Cancer Network (NCCN) developed guide-
London. The hospice movement came to the United States lines to facilitate the appropriate integration of palliative care
in the mid-1970s, when Dr. Florence Wald, a nursing pioneer, into anticancer therapy.7 The focus of all these efforts is to
led an interdisciplinary team to create the rst American change the standard practice of palliative care (identied as
hospice.5 too little, too late)in which there is a distinct separation
Hospice care became a Medicare benefit in the 1980s. between diagnosis, treatment, and end-of-life careto a vision
Patients traditionally followed in hospice programs could no of the future in which there is front-loading of palliative
longer receive life-prolonging therapy, and it was required care.8 This means, for example, that at the time of the cancer
that they be certied by a physician as having a life expectancy diagnosis and initiation of treatment the patient would also
of 6 months or less. This presented a problem for patients liv- have access to psychological counseling, nutrition services,
ing with a chronic debilitating disease, whose life expectancy pain management, fatigue management, and cancer rehabili-
was unclear or was greater than 6 months, or who, for a vari- tation.8 Such a model is appropriate for other chronic diseases
ety of reasons, did not want to be identified as a hospice as well. Medicaring, a national demonstration project spear-
patient. The palliative care and family-centered care pro- headed by the Center to Improve Care of the Dying, is an
vided through hospice programs was needed, but the barri- example of an attempt to integrate palliative care into the
ers presented by the rationing of hospice programs (based on medical and disease management for seriously ill patients with
prognosis) and the requirement of denying life-prolonging cardiac and pulmonary disease, who have a life expectancy
therapies deprived many individuals of the benefit of such between 2 to 3 years. The intent is to make this program a
care. Medicare benet, as is the case with hospice care.9
The palliative care model evolved from the traditional
hospice perspective to address quality-of-life concerns for
those patients living for prolonged periods with a progres- o]
sive, debilitating disease. It recognized the change in the tra- The Distinctive Features of Palliative Care Nursing
jectory of dying in many industrial countries, from that of a
relatively short illness leading to death, to one involving a It is useful to dene the eld of palliative care nursing and to
progressive and prolonged debilitating illness frequently recognize how it differs in essence from other areas of nursing
associated with multiple factors affecting the quality of life. It care. In this way, nurses can be educated and trained appropri-
recognized that such factors required skilled and compas- ately, and the special nature of such education and training
sionate palliative care interventions regardless of prognosis, can be recognized. Palliative care nursing reects a whole per-
life-prolonging therapy, or closeness to death. In looking son philosophy of care implemented across the lifespan and
at the relationship between hospice and palliative care, per- across diverse health settings. The patient and family is the
haps hospice can best be described as a program through unit of care. The goal of palliative nursing is to promote qual-
which palliative care is intensified as an individual moves ity of life along the illness trajectory through the relief of suf-
closer to death. Ideally, patients and families living with a fering, and this includes care of the dying and bereavement
chronic debilitating and progressive disease could receive follow-up for the family and signicant others in the patients
palliative care throughout the course of their disease and its life. Relieving suffering and enhancing quality of life include
treatment, and as they come closer to death could transition the following: providing effective pain and symptom manage-
seamlessly and without added distress into a hospice pro- ment; addressing psychosocial and spiritual needs of the
gram of care. patient and family; incorporating cultural values and attitudes
Introduction to Palliative Nursing Care 7
into the plan of care; supporting those who are experiencing oriented toward life-prolonging therapies who has provided
loss, grief, and bereavement; promoting ethical and legal care for a given patient over a number of years may feel lost,
decision-making; advocating for personal wishes and prefer- helpless, overwhelmed, and uncertain of his or her role in the
ences; using therapeutic communication skills; and facilitating care of the dying; yet, the patient and family may feel very
collaborative practice. close to that physician and have a great need for him or her at
In addition, in palliative nursing, the individual is recog- this time. Fear of abandonment by the patient, and the desire
nized as a very important part of the healing relationship. The of the physician to do everything rather than abandon the
nurses individual relationship with the patient and family is patient, may result in inappropriate and harmful treatments
seen as crucial. This relationship, together with knowledge and being offered and accepted. A nurse who is educated and
skills, is the essence of palliative care nursing and sets it apart trained in palliative care and end-of-life care can do much to
from other areas of nursing practice. However, palliative care guide and support the physician during this transition and to
as a therapeutic approach is appropriate for all nurses to prac- redirect or reframe the interventions from doing everything
tice. It is an integral part of many nurses daily practice, as is toward doing everything to provide comfort and healing.
clearly demonstrated in work with the elderly, the neurologically There may be other reasons why patients want to continue
impaired, and infants in the neonatal intensive care unit. aggressive, life-prolonging interventions in the face of impend-
The palliative care nurse frequently cares for patients ing death. Understanding why at times aggressive medical care
experiencing major stressors, whether physical, psychologi- and life-prolonging measures are sought is an integral part of
cal, social, spiritual, or existential. Many of these patients the role of the nurse on the palliative care team. This is illus-
recognize themselves as dying and struggle with this role, trated in the following case example:
which they neither sought nor wanted. To be dying and to
care for someone who is dying are two sides of a complex
9=
social phenomenon. There are roles and obligations for each
case study
person. To be labeled as dying affects how others behave
Mr. Ray, a Patient with Prostate Cancer
toward an individual and how the individual behaves toward
self and others.1012 The person is dying, is becoming dead Mr. Ray, a 57-year-old man with far advanced prostate cancer
(personal communication, Eric Cassell, January 1, 2000), and rapidly failing pulmonary status, wanted every measure
with all that that implies at both an individual and a social to be used to maintain life, including a tracheostomy and
level. A feeling of failure and futility may pervade the rela- respirator. He had a wonderful and caring family who wanted
tionship between the patient and a nurse or physician not whatever he wanted. Staff members felt that they were doing
educated or trained in hospice or palliative care. They may harm by introducing these extraordinary measures but
become disengaged, and the potential for growth on the part complied with the patients wishes. Mr. Ray had fought the
of both patient and clinician may be lostI failed to care odds on several previous occasions and expected to do so
for him properly because I was ignorant . . . the memory again. He remained on a respirator for 6 weeks, during which
haunts me. time he was alert and cognitively intact. What the staff did
not realize was that during this time the man was completing
important work. He sold his business, which he wanted to do
o] before he died so that his wife would not be burdened with
The Palliative Care Nurse and the Interdisciplinary this task after his death. Once this goal was completed,
Palliative Care Team: Collaborative Practice Mr. Ray gave his physician the thumbs up sign and indi-
cated that he was ready to come off the respirator. The family
The composition of teams providing palliative care varies tre- was at peace with this decision, but the young physician who
mendously, depending on the needs of the patients and the was responsible for his care and had become very close to the
resources available. The one common denominator is the patient and family over the weeks struggled with the concept
presence of a nurse and a physician on the team. Regardless of of prolonging death versus hastening death if the respirator
the specic type of palliative care team, it is the nurse who was withdrawn. Some of the nursing staff were similarly
serves as a primary liaison between the team, patient, and fam- troubled. It would have been easier not to have started the
ily and who brings the team plan to the bedside, whether that treatment than to start and then withdraw it. An experienced
is in the home, the clinic, or the inpatient setting. Because of palliative care nurse mentored the young physician and
the close proximity of the nurse to the patient and family nurses through their personal ethical struggles and stayed by
through day-to-day observation and care, there is often a shift the physicians side as he administered the sedative drug and
in the balance of decision-making at the end of life from withdrew the respirator. The patient died 2 days later; a family
physician to nurse.13 However, continued involvement of the member was with him all the time. The young physician
physician in palliative care should still be fostered and encour- expressed relief that the patient had not died right away and
aged; it is a myth that the physician need be less involved as the said he felt more comfortable for having not crossed the line.
goal of care shifts from cure to comfort. However, a physician o]
Although other members of the interdisciplinary team, it, Americans had no better than a fair chance of nding good
including the chaplain and social worker, were involved with this care for their loved ones or for themselves when facing a life-
patient and familys care and in family and staff debrieng and threatening illness. For example, nationally only 25% of deaths
bereavement follow-up sessions, the palliative care nurse played occur at home, although 70% of Americans say that they
a central coordinating and mentoring role in meeting the needs would prefer to die at home; about half of all deaths occur in
of the patient, family, physician, and nursing staff. However, no hospitals, but fewer than 60% of the hospitals in any given
single discipline can meet the needs of most patients and their state offer specialized end-of-life services, and most states have
families; an interdisciplinary team greatly enhances such care.13 only fair hospice use.20 In 2000, there were approximately
How little is known about patients and their families, and 3100 hospice programs in the United States, caring for 700,000
their aspirations, is also illustrated in this case. What seems to be patients and their families. Of these patients, more than 50%
an irrational choice to health care providers may be eminently had a cancer diagnosis, 10% had end-stage cardiac disease, 6%
sensible to the patient and family. The frequent struggle and had dementia, 3% had end-stage kidney disease, and 2% had
suffering of nurses and physicians as they grapple with their end-stage liver disease.21
own mortality and with being asked to provide care they think Although the state report card measures were very disturb-
is inappropriate or harmful for dying patients is also demon- ing, activities at the federal, state, and community levels con-
strated. Assessment and communication skills, as well as a rm tinue to work toward improving access to skilled palliative care
foundation in the ethical principles of palliative care and end- and end-of-life care. Some broad examples of these initiatives
of-life care when treating such patients, are clearly important. by professional organizations supported through philanthropic
funding include the following:
Promoting Excellence in End-of-Life Care, a pro-
o]
gram of the Robert Wood Johnson Foundation that
End-of-Life Care in the United States Today:
provides grants and technical support to innovative
Improving But Still a Long Way To Go
programs throughout the United States to improve
care of the dying22
The inadequacy of care for the dying, who are among the most
The End-of-Life Nursing Education Consortium
voiceless and vulnerable in our society, came into national
(ELNEC), a national education program to improve
focus during the debates over the past decade surrounding
end-of-life care23
physician-assisted suicide and euthanasia. The national dia-
The Education on Palliative and End-of-Life Care
logue was fueled by the actions of Dr. Jack Kevorkian and his
(EPEC) project, a national program for physicians
suicide machine; the rulings of two United States Appeals
to improve end-of-life care24
Courts on the right to die14,15; ndings from the Study to Under-
The pain standards supported by the Joint Commis-
stand Prognoses and Preferences for Outcomes and Risks of
sion on Accreditation of Healthcare Organizations
Treatments (SUPPORT)16; interviews with family caretakers17;
(JCAHO), which hold institutions accountable for
a review of end-of-life content in nursing and medical texts,18,19
assessment and management of pain among the
which reected minimal to no such content; and the Institute
patients in their care25
of Medicines reports on end-of-life care, with its series of rec-
ommendations to address deciencies in care of the chronically In addition, philanthropically supported programs to
ill and dying, both children and adults.2,4 improve care of the dying have been developed at a commu-
Means to a Better End, a report card generated by Last Acts nity level to meet the needs of specific populations (e.g., the
(a Robert Wood Johnsonfunded coalition created with almost Missoula Demonstration Project26) or underserved commu-
1000 national partner organizations dedicated to end-of-life nities (e.g., the Harlem Palliative Care Network27). There are
reform), was the rst attempt at a comprehensive report on also a growing number of palliative care programs being
the state of end-of-life care in the United States.20 Between developed within institutions and long-term care facilities,
August 30 and September 1, 2002, slightly more than 1000 as well as end-of-life pathways and critical care pathways
Americans were surveyed by telephone and asked their opin- for the dying.28 Home hospice programs that offer pallia-
ions regarding the quality of health care at the end of life. Three tive care consultation services to the broader patient popula-
quarters of those surveyed had suffered the loss of a family tion are a recent innovation that may improve access to
member or close friend in the last 5 years. Each of the 50 states palliative care in nonhospice patients. Board certification in
and the District of Columbia were represented in the survey palliative nursing and palliative medicine are also important
and were rated on eight criteria: state advance directive poli- milestones in recognizing the specific body of knowledge
cies, location of death, hospice use, hospital end-of-life care and expertise necessary to practice with competence in this
services, care in intensive care units at the end of life, pain specialty.
among nursing home residents, state pain policies, and the Many of these professional, state, and community initiatives
presence of palliative carecertied nurses and doctors. address the barriers identied by the National Cancer Policy
The ndings suggested that, despite many recent improve- Board that keep individuals with progressive cancer from receiv-
ments in end-of-life care and greater public awareness about ing excellent palliative care.29 These barriers include
The separation of palliative and hospice care from Americas Voice for the Dying. The consensus project has ve
potentially life-prolonging treatment within the goals: (1) to build national consensus concerning the deni-
health care system, which is both inuenced by and tion, philosophy, and principles of palliative care through an
affects reimbursement policy open and inclusive process that includes the array of profes-
Inadequate training of health care personnel in sionals, providers, and consumers involved in and affected by
symptom management and other end-of-life skills palliative care; (2) to create voluntary clinical practice guide-
Inadequate standards of care and lack of accounta- lines for palliative care that describe the highest quality ser-
bility in caring for dying patients vices to patients and families; (3) to broadly disseminate the
Disparities in care, when available, for African clinical practice guidelines to enable existing and future pro-
Americans and other ethnic and socioeconomic grams to dene better their program organization, resource
segments of the population requirements, and performance measures; (4) to help clini-
Lack of information and resources for the public cians provide the key elements of palliative care in the absence
dealing with end-of-life care of palliative care programs; and (5) to promote recognition,
Lack of reliable data on the quality of life for stable reimbursement structure, and accreditation initiatives.
patients dying of cancer (as well as other chronic The clinical practice guidelines cover in detail eight domains
diseases) identied as being crucial to the delivery of comprehensive
Low public sector investment in palliative care and palliative care: the structure and process of care; the physical
end-of-life care research and training domain; the psychological and psychiatric domain; the social
domain; the spiritual, religious, and existential domain; the
The National Institute of Medicine Report on improving
cultural domain; the imminently dying patient; and ethics and
care at the end of life2 suggested that people should be able to
the law. The guidelines were released in April 2004 and are
achieve a decent or good deathone that is free from
outlined in Appendix 11.
avoidable distress and suffering for patients, families, and care-
givers; in general accord with patients and families wishes; and
reasonably consistent with clinical, cultural and ethical stan-
o]
dards (p. 24). The report and recommendations focused on
The Scope and Aims of the Second Edition
the interdisciplinary nature of palliative care, of which nursing
of the Textbook of Palliative Nursing
is the core discipline. Traditionally, nursing has been at the
forefront in the care of patients with chronic and advanced
Palliative nursing is a world of many connections. To see the
disease, and recent advances in symptom management, com-
world of the individual, a multidimensional, multilens per-
bined with the growing awareness of palliative care as a public
spective is needed. Often, this complexity is best conveyed
health issue, have provided the impetus for bringing together
through simple stories.3133 This duality of complexity and sim-
this compendium of nursing knowledge.
plicity is incorporated into the structure of the current and
The general public and the health care community, of
expanded second edition of the Textbook of Palliative Nursing.
which nurses are the largest group, have been confronted with
Each chapter is introduced by a quotation from a patient or
facts about care for the dying and with the task of determining
family member, to illustrate the content of the chapter. Key
how to achieve quality of life even at the end of life. In Decem-
Points are included as a quick reference and also as an overview
ber 2001, a consortium of ve national palliative care organi-
of the chapter content. In addition, brief case examples are
zations came together in New York because of the identied
used to anchor the theoretical and practical content of the
need to expand access to palliative care for patients and fami-
chapter in real-life situations.
lies; to increase the number of reliable, high-quality programs;
The textbook, which includes an international perspec-
and to ensure quality.30 Participants from these organizations
tive, is intended as a comprehensive resource for nurses in the
were nominated by their peers, with palliative care nursing
emerging eld of palliative care. The approach has been to
leadership well represented by Connie Dahlin, Betty Ferrell,
incorporate the principles of palliative care nursing through-
Judy Lentz, and Deborah Sherman.
out the course of a chronic, progressive, incurable disease
rather than only at the end of life. The scope is broad. The con-
tent, contributed by more than 100 national and international
o] nurse experts and divided into 67 chapters in ten parts, covers
The National Consensus Project for the world of palliative care nursing.
Quality Palliative Care Part I provides a general introduction to palliative nurs-
ing care and includes an in-depth discussion of hospice care as
The National Consensus Project consists of ve key national a model for quality of end-of-life care, the principles of family
palliative care organizations: American Academy of Hospice assessment, and the principles of communication in pallia-
and Palliative Medicine, Center to Advance Palliative Care, tive care. Part II moves into the critical area of symptom assess-
Hospice and Palliative Nurses Association, National Hospice ment and management. Each of the 21 chapters in this section
and Palliative Care Organization, and Partnership in Caring: addresses the assessment and pathophysiology of the symptom,
pharmacologic interventions, nondrug treatments, and patient/

family teaching within the goals of palliative care. The chapter references
on complementary and alternative medicine has been greatly
expanded, and a chapter on sedation for intractable symptoms 1. Kuhl D. What dying people want: Practical wisdom for the end
has been added. of life. New York: Public Affairs, 2002.
2. Field M, Cassel C. Approaching Death: Improving Care at the
Part III addresses psychosocial support in palliative care
End of Life. Committee on Care at the End of Life, Institute of
and at the end of life. Here the focus is on the meaning of hope
Medicine. Washington, DC: National Academy Press, 1997.
at the end of life, bereavement, family support, and planning 3. Corr C. Death in modern society. In: Doyle D, Hanks WC, Mac-
for the death and death rituals. Spiritual care and meaning in Donald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed.
illness are addressed in Part IV. The impact of spiritual distress Oxford: Oxford University Press, 1998:3140.
on quality of life at the end of life has become increasingly 4. Institute of Medicine. When children die: Improving palliative
clear, and the ability of the nurse to recognize such distress in and end-of-life care for children and their families. Washington,
patients and their families, and to make appropriate interven- DC: National Academy Press, 2003.
tions and referrals, is an essential component of palliative care. 5. Wald FS. Hospice care in the United States: A conversation with
Much remains to be learned in this area. An addition to this Florence S. Wald. JAMA 1999;281:16831685.
section is a chapter written by a family caregiver that gives a 6. World Health Organization. Palliative care. Available at: http://
www.who.int/hiv/topics/palliative/care/en/index.html (accessed
very personal perspective.
October 23, 2004).
In Part V, the needs of special populations and cultural
7. National Comprehensive Cancer Network (NCCN). Practice
considerations in palliative care are addressed. Included here guidelines in oncology: Palliative care, version 1.2004. Available
are the elderly, the poor and underserved, and individuals with at: http://www.nccn.org (accessed October 23, 2004).
AIDS; a new chapter covers care for the drug-addicted patient 8. Oncology Roundtable. Culture of Compassion: Best Practices in
at the end of life. Part VI focuses on improving the quality of Supportive Oncology. Washington, DC: The Advisory Board
end-of-life care across settings. After a practical overview on Company, 2001:9899.
monitoring quality and development of pathways and stan- 9. Washington Home Center for Palliative Care Studies (CPCS).
dards in end-of-life care, subsequent chapters discuss long- Medicaring. Available at: http://www.medicaring.org (accessed
term care, home care, hospital care, intensive care, rehabilitation, October 23, 2004).
and care in the outpatient or ofce setting. Additions to this 10. Cassell EJ. Diagnosing suffering: A perspective. Ann Intern Med
1999;131:531534.
section are chapters on palliative care in the emergency depart-
11. Aries P. Western attitudes towards death: From the Middle Ages to
ment, palliative surgery, and palliative chemotherapy and clin-
the present. Baltimore, Md.: Johns Hopkins University Press, 1974.
ical trials. 12. Cherny N, Coyle N, Foley KM. Suffering in the advanced cancer
It is with enormous pleasure, and in recognition of the patient. Part I: A denition and taxonomy. J Palliat Care 1994;
need, that Part VII is entirely devoted to pediatric palliative 10:5770.
care across care settings. Part VIII moves into special issues for 13. Ingham J, Coyle N. Teamwork in end-of-life care: A nurse-
nurses in end-of-life care and includes ethics, public policy, physician perspective on introducing physicians to palliative
requests for assistance in dying, nursing education, and nurs- care concepts. In: Clark D, Hockley J, Ahmedzai S. New Themes
ing research. Part IX explores models of excellence and inno- in Palliative Care. Buckingham: Open University Press, 1997:
vative community projects. International models of excellence 255274.
are represented here, replacing the international chapters found 14. United States Court of Appeals for the Ninth Circuit. Compas-
sion in Dying v. State of Washington. Fed Report. 1996 Mar 6
in the rst edition of this textbook. Part X gives voice to the
(date of decision);79:790859.
patient and family, exploring the concept of a good death
15. United States Court of Appeals for the Second Circuit. Quill v.
through a detailed case discussion. The appendix provides a Vacco. Fed Report. 1996 Apr 2 (date of decision);80:716743.
very comprehensive and useful list of community and profes- 16. SUPPORT principal investigators. A controlled trial to improve
sional resources. care for seriously ill hospitalized patients: The Study to Under-
The purpose of the Textbook of Palliative Nursing is to stand Prognoses and Preferences for Outcomes and Risks of
organize and disseminate the existing knowledge of experts Treatments (SUPPORT). JAMA 1995;274:15911598.
in palliative care nursing and to provide a scientic under- 17. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J,
pinning for practice. The focus is on assessment and man- Claessens MT, Wenger N, Kreling B, Connors AF Jr. for SUP-
agement of the wide range of physical, psychosocial, and PORT investigators. Perceptions by family members of the dying
spiritual needs of patients, their families, and staff in pallia- experience of older and seriously ill patients. Study to Under-
stand Prognoses and Preferences for Outcomes and Risks of
tive care across clinical settings. Topics frequently cited as
Treatments. Ann Intern Med 1997;126:97106.
challenges in nursing care at the end of lifeincluding pal-
18. Ferrell BR, Virani R, Grant M, Juarez G. Analysis of pallia-
liative sedation, communication, ethics, research, and provid- tive care content in nursing textbooks. J Palliat Care 2000; 16:
ing care for the underserved and homelessare specically 3947.
addressed. As illustrated throughout, the world of palliative 19. Rabow MW, Hardie GE, Fair JM, McPhee SJ. End-of-life care
care nursing is complex, scientically based, and immensely content in 50 textbooks from multiple specialties. JAMA. 2000;
rewarding. 283:771778.
20. Last Acts. Means to a better end: A report card on dying in Team documents and communicates treatment
America today. November 2002. http://www.lastacts.org/les/ alternatives, permitting patient/family to make
misc/meansfull.pdf (accessed April 7, 2003). informed choices.
21. National Hospice and Palliative Care Organization. NHPCO facts Family is educated and supported to provide
and gures. Available at: http://www.NHPCO.org/les/public/ safe/appropriate comfort measures to the patient.
Facts%20Figures%20Feb04.pdf (accessed October 23, 2004).
22. Promoting Excellence in End-of-Life Care website. Available at:
Domain 3: Psychological and Psychiatric
http://www.promotingexcellence.org (accessed October 23, 2004).
23. American Association of Colleges of Nurses. End-of-Life Nurs- Psychological and psychiatric issues are assessed and
ing Education Consortium (ELNEC) website. Available at: managed based on best available evidence.
http://www.aacn.nche.edu/ELNEC/ (accessed October 23, 2004). Team employs pharmacologic, non pharmacologic
24. The Education on Palliative and End-of-Life Care (EPEC) proj- and CAM as appropriate.
ect website. Available at: http://www.epec.net (accessed October Grief and bereavement program is available to
23, 2004). patients and families.
25. Joint Commission on Accreditation of Healthcare Organizations
and National Pharmaceutical Council, Inc. Improving the quality Domain 4: Social
of pain management through measurement and action. Available Assessment includes family structure, relationships,
at: http://www.jcaho.org/news+room/health+care+issues/pain+
medical decision-making, nances, sexuality,
mono_jc.pdf (accessed October 23, 2004).
caregiver availability, access to medications and
26. Lifes End Institute. Missoula demonstration project. Available
at: http://www.missoulademonstration.org (accessed October equipment.
23, 2004). Individualized comprehensive care plans lessens
27. Payne R, Payne TR. The Harlem Palliative Care Network. J Pal- caregiver burden and promotes well-being.
liat Med 2002;5:781792.
28. Coyle N, Schacter S, Carver AC. Terminal care and bereavement. Domain 5: Spiritual, Religious, and Existential
Neurol Clin 2001;19:10051025. Assesses and addresses spiritual concerns.
29. Institute of Medicine and National Research Council. Improv- Recognizes and respects religious beliefprovides
ing Palliative Care for Cancer: Summary and Recommenda- religious support.
tions. Washington, DC: National Academy Press, 2001:59. Makes connections with community and spiritual
30. National Consensus Project for Quality Palliative Care. Available
religious groups or individuals as desired by
at: http://www.nationalconsensusproject.org (accessed October
patient/family.
23, 2004).
31. Steeves RH. Loss, grief and the search for meaning. Oncol Nurs
Forum 1996;23:897903. Domain 6: Cultural
32. Ferrell BR. The quality of lives: 1525 voices of cancer. Oncol Nurs Assesses and aims to meet cultural-specic needs of
Forum 1996;23:907915. patients and families.
33. Coyle, N. Suffering in the rst person. In: Ferrell BF, ed. Suffer- Respects and accommodates range of language,
ing. Boston: Jones and Bartlett, 1996:2964. dietary, habitual, and religious practices of patients
and families.
Team has access to/uses translation resources.
o] Recruitment and hiring practices reect cultural
appendix 11 diversity and community.
Summary of the National Consensus Project
Clinical Practice Guidelines Domain 7: The Imminently Dying Patient
Team recognizes imminence of death and provides
Domain 1: Structure and Practice of Care appropriate care to the patient and family.
Care starts with a comprehensive interdisciplinary As patient declines, team introduces hospice referral
assessment of the patient and family. option.
Addresses both identied and expressed needs of Team educates the family on signs/symptoms of
the patient and family. approaching death in a developmentally, age, and
Education and training available. culturally appropriate manner.
Team in commitment to quality improvement.
Emotional impact of work on team members Domain 8: Ethics and Law
is addressed. Patients goals, preferences, and choices are
Team has a relationship with hospice. respected and form basis for plan of care.
Team is knowledgeable about relevant federal and
Domain 2: Physical state statutes and regulations.
Pain, other symptoms, and treatment side effects are
managed using best practice. (Source: National Consensus Project, reference 30.)
2o] Kathleen A. Egan and Mary J. Labyak
Hospice Palliative Care: A Model

for Quality End-of-Life Care
It made me proud that I was able to take care of my loved one at home like we wanted to do for each
other. With the help and advice from hospice we were able to do it. I will never regret the time I
spent caring for my husband. Sure, there were hard times, but there were also really close times.
Hospice helped us prepare together and allowed us some quality time for closure. This experience
has given us a sense of satisfaction and our lives more meaning. We learned to cherish each moment
and memory we had and enjoy our time together. They really understood his needs as well as mine.
We experienced the true meaning of unconditional love from hospice.Spouse of a hospice patient
Key Points Hospice is a program of care provided across a variety of set-

Nurses must understand and honor each patients and familys tings, based on the understanding that dying is part of the nor-
unique experiences near lifes end, addressing the physical, mal life cycle. As people experience this last phase of life,
emotional, and spiritual dimensions of the experience through hospice provides comprehensive palliative medical and sup-
holistic care guided by what is most important to the patient and portive services, compassion, and care with the goals of com-
family at this time in their lives. fort and quality of life closure. A hospice supports the patient
Hospice blends compassion and skill to support patients and through the dying process and the family through the experi-
families through life-limiting illnesses and caregiving, so that they ence of caregiving, the patients illness, dying, and their own
may experience life and relationship completion and closure with bereavement. Understanding that the last phase of life is as
dignity and comfort. individual as each person who experiences it, a hospice advo-
Hospice care models are expanding to serve people across the cates so that people may live the remainder of their lives with
lifespan with a variety of services that are helpful from the time of dignity and die in a manner that is meaningful to them.
diagnosis of a life-limiting condition through bereavement, Instead of asking the patient and family members to t into
including preventive approaches of a public health model. a caregiving system, hospice extends services according to their
Hospice palliative care services can be provided in all care settings unique situation and values focusing on compassionate care.
or in the patients and familys home throughout the disease process. Compassionate care by its very nature is shaped to t the indi-
Nurses working with the dying and bereaved can experience vidual needs and values of the people involved. Hospice allows
cumulative loss while nding great meaning and purpose in the patient and family to direct the services received, rather
their work. than having professionals direct the lives of the patient and
family. Hospice focuses on the individuals and familys world
and encourages personal choices and meaningful experiences
concerning the process of illness, dying, and death.
Hospices unique blend of compassion and skill helps
patients and their families deal with life-limiting illnesses and
caregiving so that they may (1) live each day with comfort and
dignity, (2) retain control over their lives, and (3) discover
renewed meaning and purpose in this time of their lives.1
Family Perspectives on End-of-Life Care at the Last Place
of Care, an article published in the Journal of the American
Medical Association in January 2004, revealed that the physical
and emotional needs of the dying in this country continue to
be poorly met, particularly for those who die in institutions.
Home-based hospice care received the highest levels of overall
satisfaction from respondents in this study. The authors reported
that bereaved family members of patients with home hospice
services [in contrast to other settings of care] reported higher
satisfaction, fewer concerns with care and fewer unmet needs.
13
The study stated that high quality end-of-life care results when According to National Hospice Foundation research, 80%
health care professionals ensure desired physical comfort and of Americans wish to die at home. Of the 2.4 million Ameri-
emotional support, promote shared decision making, treat the cans who die each year, fewer than 25% actually die at home.
dying person with respect, provide information and emotional Of the 700,000 patients who received hospice care, more than
support to family members, and coordinate care across set- 75% died at home.4 Hospice programs provide state-of-the-art
tings. These characteristics of quality end-of-life care are inte- palliative care and supportive services to individuals who are
gral to the interdisciplinary hospice philosophy of care.2 near the end of their lives, and to their family members and
signicant others; 24 hours a day, 7 days a week; in private
homes, facility-based care settings, or wherever the patient
may reside, including acute care settings. Physical, social, spir-
o]
itual, and emotional care are provided by a medically directed
Hospice in the United States
interdisciplinary team (IDT) consisting of patients and their
families, professionals, and volunteers during the last phase of
Hospice began in the United States as a grassroots effort to
an illness, the dying process, and the bereavement period.3
improve the quality of the dying experience for patients and
their families. Historically, health care delivery systems have
been disease driven, with the focus on cure and rehabilitation. Hospice Palliative Care: A Holistic Approach Focusing
Approaches have focused on scientic knowledge of diseases, on the Experience of the Patient and Family
which drives the care processes. However, approaches to care
Understanding the need for a better way to care for the dying,
are different when cure is the goal and when cure is no longer
the hospice movement began to provide alternatives to the
possible. End-stage disease progression and resulting symp-
traditional curative model. Hospice expanded the traditional
toms produce different physiological responses as well as dif-
model, not only to address end-stage disease and symptom
ferent emotional responses. Hospice care began as a grassroots
management but also to provide for the emotional, social, and
effort in communities where the traditional medical model fell
spiritual dimensions of the patients and familys illness, dying,
short of addressing those differences.
and caregiving experiences.
The Standards of Practice for Hospice Programs of the
The beginning of the contemporary hospice movement is
National Hospice and Palliative Care Organization (NHPCO)
credited to Dame Cicely Saunders. Beresford5 described her
describes palliative care as follows:
pioneering work as follows: Her concept of hospice was to
Palliative care is treatment that enhances comfort combine the most modern medical techniques in terminal
and improves the quality of an individuals life dur- care with the spiritual commitment of the medieval religious
ing the last phase of life. No specic therapy is orders that had once created hospices as way stations for peo-
excluded from consideration. The test of palliative ple on pilgrimages.
care lies in the agreement between the individual, The experience of the last phase of life is an individual jour-
his or her physicians, the primary caregiver, and the ney involving ones mind, body, and spirit. Cassell6 described a
hospice team that the expected outcome is relief theory of personhood whereby each person is a holistic being
from distressing symptoms, the easing of pain, with dynamic, interrelated dimensions that are affected by the
and/or enhancement of the quality of life. The changes and adaptations experienced with progressive illness
decision to intervene with active palliative care is and dying. These dimensions involve the physical experience
based on an ability to meet stated goals rather than of end-stage disease, the emotional experience of ones rela-
affect the underlying disease. An individuals needs tionships, and the way in which one denes spiritual exis-
must continue to be assessed, and all treatment tence.7 As the disease progresses and the physical dimensions
options must be explored and evaluated in the decline, the other dimensions (i.e., interpersonal and spiri-
context of the individuals values and symptoms. tual) take on added meaning and purpose. What one denes
The individuals choices and decisions regarding as quality of life changes substantially for people with life-
care are paramount and must be followed.3 limiting illnesses. Life perspectives, goals, and needs change. It
Palliative care is considered to be the model for is a time of reection on a broader sense of meaning, purpose,
quality, compassionate care at the end of life. Hos- and relationships, based on each individuals values.
pice care involves a team-oriented approach to Hospice grew from this understanding of full personhood;
expert medical care, pain management, and emo- it is designed to offer expert end-of-life care to patients and
tional and spiritual support expressly tailored to the families that addresses all of these dimensions through an
patients needs and wishes. Support is extended to IDT approach. Each patient and family is supported by an IDT
the patients family as well. At the center of hospice consisting of physicians, nurses, social workers, counselors,
is the belief that each of us should be able to live chaplains, therapists, home health aides, and volunteers. These
and die free of pain, with dignity, and that our fami- disciplines reect the expertise needed to address the varied
lies should receive the necessary support to allow us dimensions that are affected through the course of illness,
to do so.4 caregiving, dying, and bereavement.
Hospice Palliative Care: A Model for Quality End-of-Life Care 15
Aging in the United States and End-of-Life Care long before the last 6 months of life; recognizing the variable
dying process; and providing an array of services and intensi-
The aging of America has changed the nature and needs of peo- ties of service so that individuals may age in place and stay in
ple who are in their last years of life. The Medicare Hospice Ben- their own homes or wherever they choose until death. Hos-
et (MHB) was designed to provide substantial professional pice, therefore, neither hastens nor postpones death but,
and material support (e.g., medications, equipment) to families rather, afrms life. The focus is on quality of life closure, which
caring for dying individuals at home during their last 6 months begins with the patients and familys denitions of what is
of life. The benet was designed for, and lends itself well to, the most important to them for their remaining time together and
predictable trajectory of end-stage cancers but not as well to is guided by their values, choices, goals, and dreams.
unpredictable chronic illnesses such as congestive heart failure,
chronic lung disease, stroke, and dementing illnesses.8 An exam-
ination of hospice care and the delivery of quality end-of-life o]
services must reect the societal change in aging demographics Hospice Palliative Care Philosophy
and the resulting varied needs in end-of-life care models.
In our society, the overwhelming majority of dying people Hospice philosophy supports the long-term objective of creat-
are elderly, and they typically die of a slowly progressing, ing a personalized experience with each patient and family at
chronic disease or of multiple coexisting problems that result the end of life, whereby in the face of suffering there is oppor-
in multisystem failure. Their nal phase of life, which often tunity to nd meaning, growth, and quality end of life and
lasts several years before death, is marked by a progressive relationship closure. Promoting quality of life and relation-
functional dependence and associated family and caregiver ships as well as death with dignity, hospice assists the patient
burden. Hospice programs in demographic areas that repre- and family to live each day as fully as possible for the remain-
sent the future of our aging society, such as Florida, have ing time together.
expanded their care and service options well beyond the orig-
inal denition of the (MHB) to more fully respond to the frail Honoring the Patients and Familys Experience
elderly in their communities who are dying of chronic, pro-
gressive illnesses. These expanded hospice delivery models The experiences of advanced illness, dying, and caregiving
(Table 21) are applying hospice philosophy and services in the have signicant and profound effects on both the patient and
care of patients and their families throughout the lifespan, the family. Therefore, hospice philosophy supports both patient
Table 21
Hospice Palliative Care Services Across the Lifespan
Community Palliative Care Bereavement/

Programs Programs Home Care Hospice Bridges
Prenatal Decision Making Home Care Medicare Hospice Emergency Response

Early Childhood Education Consultation Volunteers Benet Victims of Crime
Teen Programs Palliative Care Counseling Caregiver Seminars
Consulting Spiritual Care Residential Care Education
Education
Palliative Care Units Childrens Program Independent Living Camps
Information/Referral
in Hospitals/NHs
Patient/Caregiver Support HIV Programs Inpatient Retreats
Supportive Care
Groups Jewish Hospice CISD
Pain Team
Advance Directive Childrens Hospice Grief Counseling
Consulting Disease State Management
HIV Programs Peer Counseling
Counseling Case Management
Long-Term Care
HIV Program HIV Program
ALF
Childrens Program Childrens Program
Prison Hospice
Long-Distance Case PACE
Catholic Hospice
Management Community-Based
Peer Care Chronic Care Partners
Community Caregiver Support and
Mobilization Resources
PACE, program of all-inclusive care for the elderly; NH, nursing home; ALF, adult living facilities; CISD, critical incident stress debrieng
Source: The Hospice of the Florida Suncoast, Largo, Florida, copyright January 2004.
and family as the unit of care. Family is dened as not only the Hospice Care, Palliative Care, and Curative Care
biological relatives but also those people who are identied by
the patient as signicant. Hospice is a dened, integrated model of palliative care, which
Patients and families face many changes and losses during can be as aggressive as curative care, with a focus on comfort,
the last years of life. Patients often become concerned about the dignity, quality of life/relationship closure, and patient/family
burden they may cause their family and how their family will choice. Palliative care extends the principles of hospice care to
survive after they are gone. Families become concerned about a broader population that could benet from receiving this
how to care for the patient, how to adapt to role changes, their type of care earlier in their illness or disease process. Palliative
reactions to their losses, and how their lives will change after care, ideally, would segue into hospice care as the illness pro-
the death. Families provide varying degrees and types of sup- gresses.
port, love, and compassion during times of change and crisis. Palliative care is most appropriate when it is applied
As the patient becomes more dependent on others for care, throughout the care continuum, even concurrently with cura-
families become even more signicant in this process. Yet, many tive approaches if appropriate. A patient receiving curative
families have never experienced caring for a loved one who is chemotherapy or radiation therapy could certainly benet from
dying, and many lack the experience of their own losses. palliative symptom management. From a psychological and
With understanding of the importance of these relation- spiritual perspective, patients and their families begin to think
ships and family dynamics, patient and family suffering can be about the aspects of life and relationship closure from the time
minimized and experiences can be enhanced through educa- they recognize that the patient has an incurable disease. Emo-
tion, support, and services. Hospice honors the intimate and tional and spiritual support from the time of diagnosis, includ-
important role of the family in caregiving and offers resources, ing preparation for remaining life, advancing illness, caregiving,
education, and support so that family members can be involved death, and bereavement, creates optimal experiences. When
in a meaningful way with the care of their loved one. a patients disease process is no longer curable or reversible,
Hospice philosophy, therefore, promotes the patient and aggressive curative treatment becomes increasingly inappropri-
family as a single unit of care. Care does not stop after the death ate. An aggressive curative approach to care may actually cause
of the patient. Just as the patients death experience involves the more suffering if cure is no longer possible, or it may simply
physical, emotional, spiritual, and social dimensions, survivors extend the period of suffering needlessly. As a patient advocate,
reactions to caregiving and loss are experienced through the the hospice nurse is responsible for understanding the differ-
same dimensions. Bereavement-support services are contin- ences between curative and palliative interventions, to avoid
ued for family caregivers for 1 year or longer after the death of futile care and prevent unnecessary suffering.
the patient, assisting them through bereavement and reinte- The curative model of care has an inherent problem orien-
gration to a different life. tation. Practitioners are often trained to assess and identify
problems and then determine how to reverse the problem
Care Is Directed by Patient and Family and its effects. Palliative care moves beyond problem identi-
Choices and Values cation. The specialty of hospice nursing involves the expert
management of end-stage disease symptomatology as a pre-
Hospice philosophy supports the understanding that dying is requisite to providing the opportunity for patients and fami-
the patients and familys experience. Nurses are challenged to lies to experience life and relationship closure in ways that
approach the hospice care process differently from other situ- are personally meaningful. Hospice expands the traditional
ations. Hospice care begins and continues with ongoing facili- disease- and problem-orientated model to a proactive, pre-
tated discussions with the patient and family, to discern what ventive, quality of life/relationship closure orientation that
is most important to themtheir values, choices, wishes, and reects the full scope of the patients and familys illness, dying,
needs for the remaining life and death. This information and caregiving experiences.
becomes the foundation that directs the team in the provision Through anticipation and prevention of the negative effects
of care and services. Goals become patient- and family directed of physical symptoms, suffering can be decreased; this allows
rather than nurse directed. It is not about what nurses feel is the patient and family the time and personal resource energy
best but about what the patient and family choose and decide. to attend to what is most important for their life and relation-
The care plan becomes the patient/family care plan, and the ship closure. Moving beyond a simple problem orientation,
care process is dened by what the patient and family decide is the focus has become one of prevention of suffering and
important for this time. A care process directed by patient and opportunity for growth rather than simply the physical reac-
family values begins to differentiate the specialty of hospice tion to disease.
nursing, with an overall goal of quality of life and relationship A search for meaning and purpose in life is a common
closure as dened by the patient and family. This goal is experience for people in their last years of life and for their
achieved when the patient and family are given opportunities families. From the individual experience of suffering, death
to identify what is most important to completion of their life can be a time for personal growth, deepening or reconnecting
and relationships, nding meaning in closure, and reaching interpersonal and spiritual relationships, and preparing for
personal goals before and after the death. death and afterlife with enrichment of meaning.
Autonomy and Choice family discuss and choose what is best for them. Their choices
may change over time, as the disease progresses, the patient
Hospice philosophy promotes patient and family autonomy in becomes more dependent, or they accomplish their life and
which illness, caregiving, and dying are in accordance with the relationship closure goals.
patients and familys desires. Hospice philosophy strongly When advance directives such as living wills, health care
believes in patient choice regarding all aspects of living, care- surrogacy, durable power of attorney, and do-not-resuscitate
giving, dying, and grieving, including where they will die, how orders are honored, the patients wishes are carried out even if
they will die, and with whom they will die. Respecting the he or she is no longer able to communicate or to make health
patients and familys choices is paramount to quality hospice care decisions. With advance preparation, these directives can
palliative care. act in place of the patients verbal requests to ensure that her or
One of the dying patients and familys greatest concerns is his wishes are honored. When patient and family members dis-
the fear of loss of control. Many losses are anticipated and cuss advance directives together, there is often less conict over
experienced by terminally ill patients and their families, decisions and family members are more comfortable support-
including loss of bodily functions, loss of independence and ing the patients choices. When advance directives are com-
self-care, loss of income with resulting nancial burdens, loss bined with hospice philosophy, they can serve as preventive
of the ability to provide for loved ones, loss or lack of time to measures to ensure that patients choices will be communi-
complete tasks and mend relationships, and loss of decision- cated, supported, and carried out, avoiding ethical dilemmas. It
making capacity. Dying patients have a right to remain in con- is critical to provide continued opportunities for choice, input,
trol of their lives and their deaths. They are often concerned informed decision-making, and ability to change decisions as
that their wishes will not be honored, that their requests will situations change. Hospice team members are trained to facili-
not be answered, and that, when they are too ill to prevent it, tate personal and family decision-making regarding care, ser-
control of their lives will be taken from them. It is critical to vice, and life closure issues. Often, simply having professionals
provide continued opportunities for choice, input, informed comfortable enough to approach these issues allows patients
decision making, and the ability to change decisions as situa- and families to express their inner feelings, desires, and wishes.
tions change. Hospice care supports sensitivity in truth-telling to the degree
National Hospice Foundation research shows that the top that the patient and family choose, encouraging open commu-
four services Americans feel are most important for a loved nication among the patient, the family, physicians, and the
one who has less than 6 months to live are (1) someone to be hospice team. Preparation for death becomes difcult if com-
sure that the patients wishes are honored, (2) choice among munication is not open and truthful. With a truthful under-
the types of services the patient can receive, (3) pain control standing and freedom of informed choice, patients are more
tailored to the patients wishes, and (4) emotional support for the able to control their own living and dying instead of being con-
patient and family.4 trolled by the disease or by the treatment plans of others. They
can put their affairs in order, say their good-byes, and prepare
Informed Decisions and Autonomy spiritually in a way that promotes quality and dignity.
Hospice philosophy has been built on the ethical principle of Dignity and Respect for Patients and Families
veracity, or truth-telling. Patients wishes for information
about their condition are respected. Patients and families have Quality end-of-life care is most effective from the patient and
the right to be informed about their condition, treatment family perspective when the patients lifestyle choices are main-
options, and outcomes so that they can make autonomous, tained and his or her philosophy of life is respected. Individual
informed choices and spend the rest of their life the way they patients and familys needs vary depending on values, cultural
choose. orientation, personal characteristics, and environment. Dignity
Truth-telling is the essence of open, trusting relationships. is provided when individual lifestyles are supported and
A sense of knowing often relieves the burden of the unknown. respected. This requires respect for ethnicity, cultural orienta-
Knowing and talking about diagnosis and prognosis aids in tion, social and sexual preferences, and varied family structures.
making informed decisions. Patients who have not been told Hospice nursing requires the provision of nonjudgmental,
about their illness naturally suspect that something is wrong unconditional, positive regard when caring for patients and
or being hidden from them, which can result in frustrating, families, treating each persons experience as unique.
unanswered questions. When patients and families are not Each person and family has individual coping skills, varied
told the truth or information is withheld, they can no longer dynamics, and strengths and weaknesses. It is our responsibil-
make informed choices about the end of life. ity to accept patients and families where they are, approach-
Autonomy results in empowerment of the patient and fam- ing living and dying in their own way. Patients and families
ily to make their own informed decisions regarding life and should be encouraged to express any emotion, including anger,
death. Hospice encourages the discussion of advance direc- denial, or depression. By listening without being judgmental,
tives but does not inuence those decisions. Hospice nurses the hospice nurse accepts the patients and familys coping
educate on these issues and offer support while the patient and mechanisms as real and effective.
Dying patients have their own needs and wants, and hos- o]
pice nurses must be open to accept direction from the patient. Hospice Palliative Care Delivery Systems
A patients focus may include saving all of ones energy for vis-
its from loved ones, loving and being loved, sharing with oth- Hospice care is not dened by a distinct physical setting or
ers ones own philosophy of life and death, reviewing ones life individual organizational structure. It is provided in a variety
and family history, and sharing thoughts and prayers with of settings. Although 90% of hospice patient time is spent in a
ones family or caregivers. Patients goals may include such personal residence, some patients live in long-term care facili-
things as looking physically attractive or intrinsically explor- ties, assisted-living facilities, hospice care centers, or other group
ing the purpose and meaning of their lives. Hospice workers settings. In addition, some hospices provide day care programs.9
openness and being prepared to accept and support the In 2002, approximately 3200 hospice programs were in exis-
patients and familys direction on any given visit helps facili- tence in the United States. As identied by the NHPCO, the
tate and respect their goals. The patients and familys own following organizational structures of hospice programs exist,
frame of reference for values, preferences, and outlook on life with ever-expanding care and service designs to meet the
and death is considered and respected without judgment. needs of varied communities:
Respecting patients requires hospice nurses to communi-
Free-standing entities represent approximately 50% of
cate a sense of what is important to the patient and family by
hospice programs. Free-standing is dened as being
ensuring that they express their values and opinions, partici-
independent of afliation to a hospital, home health
pate in care planning, make decisions regarding care and how
care agency, or other care agency.
they choose to spend their time, and participate in their own
Hospices afliated with hospitals are managed as departments
care. Fostering an environment that allows the patient and
or divisions of a hospital or health system. Approxi-
family to retain a sense of respect, control, and dignity is the
mately 31.5% of hospice programs are of this type.
foundation of hospice care and services.
Hospices afliated with home health agencies represent
approximately 18% of hospice programs.10
The Hospice Nurse as Advocate
Enhancing quality of life and relationships is the primary goal Expanded Hospice Palliative Care Models
of hospice and palliative care. Patients who, in the later stages
of their life, have chosen to receive palliative care have a right Although hospice appears to add value to end-of-life care,
to have their wishes honored and respected at all points of and although it probably does not cost government payers
entry into and across the health care continuum. Optimizing signicantly more, the Medicare Hospice Benet alone is not
quality of life and respecting patients and familys wishes meeting all the needs of communities for comprehensive
involve a great deal of commitment, collaboration, and com- high-quality hospice and palliative end-of-life care.11 The
munication. In promoting patient autonomy, hospice nurses most prevalent model of U.S. hospice care, the Medicare
participate as patient advocates across all care settings, sup- hospice model, is not viewed as the answer to the challenge
porting the choices and goals that the patient and family have of just or equitable access to hospice care nationwide.12 Hos-
selected for the remainder of their lives. pices compatible with this model provide all or almost all of
By integrating the hospice philosophies and values, the hos- their care within the eligibility requirements and funding pa-
pice nurse acts as advocate for the patient and family, to pre- rameters of the Medicare (and Medicaid) hospice benet; this
serve their rights and protect the goals of their palliative care creates numerous access barriers. These hospice models are
plan. The hospice nurses role of professional advocacy involves much less likely to admit individuals who do not meet
collaboration with patients, families, physicians, health care Medicare hospice eligibility requirements (i.e., those without
institutions, and health care systems. She or he may be involved a 6-month terminal prognosis and those who do not choose
in advocating for appropriate symptom management, identi- to relinquish all curative care options); they are also less able
fying valuable resources, gaining access to these resources, and to admit individuals whose palliative care treatments and
coordinating the utilization of resources and services. medications are costly, although the receipt of costly bene-
The patient, family, hospice IDT, physician, hospice organ- cial palliative care treatment has become increasingly more
ization, other health and human service providers, and legal frequent.13
institutions are all affected by patient choices. It is the respon- With the understanding that the Medicare hospice model
sibility of every care provider to respect and ensure the rights needs to expand to meet the growing needs for palliative
of dying patients and their families. The services provided by care, hospice programs nationally are developing expanded
hospice care are what Americans want, yet 83% of Americans models. The NHPCO 2004 Facts and Figures report states
do not know about hospice care. Rather than reinforcing their that more than 60% of hospice programs nationally already
fears about death, it is the nurses responsibility to advocate so have services beyond those outlined in the MHB model.10
that every patient and family understands that hospice care Jennings and colleagues12 described two models of hospice
provides the compassion and dignity that they want at the end care that provide care beyond the Medicare hospice model
of life.2 (Table 22). The first of these is the Community Hospice;
Table 22
Services Provided by the Medicare Hospice Model and Extended Hospice Models
Comprehensive Hospice Model

Community Hospice Model (in Addition to All Medicare
(in Addition to All Medicare Hospice Model and Community
Medicare Hospice Model Hospice Model Services) Hospice Model Services)
Core services, required by law: Services and care for patients and families Research/Academic endeavors
Florida Statutes Section 400.609(1) Community support groups/programs Structured sharing of knowledge
Physician Palliative care treatments through presentations and
Nursing publications
General palliative care
Social work Best practice protocols and
Caregiver programs
servicesdesigning, assessing,
Pastoral or counseling Specialized staff in hospitals for supportive and educating staff
Dietary counseling palliative care and pain and symptom control
Academic-based research afliations
Bereavement counseling Special hospice therapy programs
Research on end-of-life care
As needed services, provided or Veterans initiative
Community advocacy
arranged for patient Telephone installation in patients home
Partner in a community
Physical therapy Assistance with home renovation coalition on end-of-life issues
Occupational therapy or modication
Speech therapy Caregiver/Companion funded program
Massage therapy Durable medical equipment
Home Health Aide services Pharmacy
Infusion therapy Specialized HIV/AIDS care teams
Medical supplies Services and programs for communities at large
Durable medical equipment Community education programs
Day care Workplace initiatives and support
Homemaker/Chore services Community support groups and programs
Funeral services Community programs to youth
Community programs for crisis/emergency
Professional education
Faith-based initiatives
Cultural/Diversity initiatives
Community programs for the needy
Source: Jennings et al., 2003, reference 12.
hospices compatible with this model rely on Medicare hos- Hospice Palliative Care and Service Sites
pice revenue but also provide services that reach beyond the
Medicare hospice patient to individuals who may not meet Private Homes. Encompassing the philosophical principle of
the eligibility requirements of the MHB or who do not wish autonomy, hospice supports patients and families wherever
to choose Medicare hospice. However, although the commu- they choose to live and die. The majority of hospice care is
nity hospice model is considered superior to the Medicare provided in the patients private home setting. According to a
hospice model, a third formthe Comprehensive Hospice Gallup poll commissioned by the NHPCO and released in
Center modelwas believed by Jennings and colleagues to 1996, hospice care coupled with a wish to die at home has
be better for addressing the hospice and palliative care needs widespread support among the public. In perhaps the most
of communities. Comprehensive hospices provide all the striking response in the survey, 88% of those polled said that
care and services provided by community hospices, but, in they would prefer to die in the comfort of their own home,
addition, they also have a dedicated academic mission.12 surrounded by family and friends, rather than in any health
Considering this, comprehensive hospices are centers of care institution.14 Therefore, hospice supports patients staying
excellence for hospice and palliative care. at home until death, if that is where they choose to die.
With so many people choosing to stay at home with family, Hospice seeks to afrm life while ensuring continuity of
hospice emphasizes the need to empower families so they may palliative care in long-term care settings. Some hospice patients
participate in meaningful ways in the care of their loved one. are referred while residing in long-term care, whereas others
Hospices ability to involve the family in caregiving often are transferred into long-term care after being served by a hos-
improves the familys perspectives and experiences. Research has pice program at home. As patient and family needs change at
shown signicant differences in favor of hospice in four mea- the end of life, hospice home care patients may nd long-term
sures used to evaluate the quality of life of the primary caregiver care placement a chosen, necessary alternative care setting.
(family). Primary family caregivers for hospice patients were There are many potential benets to a joint approach and
found to be less anxious and more satised with their involve- partnership between hospices and nursing homes, but key is
ment in care, compared with their nonhospice counterparts.15 the experience of the resident and family as a result of coordi-
nated resources and efforts. The potential benets of partner-
Long-Term Care Settings. As the population ages, health care ship to residents and their families or signicant others are
professionals are challenged to provide care and services in detailed in Table 23.
different ways. Hospices are increasingly serving elderly peo- Research on the benets of hospice care in nursing homes
ple, many older than 75 years of age, who live alone or with a has focused on medical dimensions of support. This research
frail family caregiver. As evidenced by the recent expansion of has shown that hospice residents, compared to nonhospice
elder care communities, the denition of home has also residents, experience fewer hospitalizations near the end of
changed for many elderly persons and can include a variety of life, have fewer invasive treatments (e.g., enteral tubes, intra-
residential settings with various levels of assistance. venous uids, intramuscular medications), and receive analgesic
Table 23
Benets of Hospice and Long-Term Care Collaboration
Benets to Patient/Family Benets to Long-Term Care Facility and Staff Benets to Hospice Provider
Access to care expertise in both Additional professionals to help Professionals expert in

long-term care and hospice care with care planning and provision chronic residential care
Additional attention from the Interdisciplinary team expertise in Nursing home staff who know and
increased number of people the specialty of palliative care support the resident as their
involved in care Shared expertise in pain and symptom extended family
Access to counseling and spiritual care management Extended team to help in care of
disciplines to meet the intense and varied Ethical decision-making consulting services resident 24 hr/day, 7 days/wk
needs that surround the end-of-life Clinical expertise in chronic care
Family decision-making counseling
experience
Hospice nursing assistant visits to More people to provide services
Access to hospice volunteers who spend near lifes end
supplement the increasing intensity of
time with residents and provide diversional
hands-on care
and quality-of-life activities that nursing
home staff do not have time to provide Validation of residents palliative care
(and care outcomes) needs to an outside
Access to hospice volunteers who assist and
reviewer (such as federal government
support families and signicant others so
quality indicator outcomes that, if
they can spend more quality time with residents
observed for nonpalliative care patients,
Continuity of care team providers would be considered negative outcomes)
Coverage of medications, medical supplies, Expertise in documenting palliative
and equipment related to terminal illness care assessment, interventions, and
Access to professionals who specialize in expected outcomes that differ
supporting residents and families from restorative/rehabilitative outcomes
to a more meaningful life closure Volunteers to sit with residents so
Additional support for family members they are not alone
providing care and anticipating life Grief support for other residents
without their loved one
Grief support for nursing home staff
Bereavement support for family who experience cumulative loss with
members for up to 12 months after the the deaths of many residents
resident has died
Education for staff on palliative care
Miller SC, Egan KA (In Press), reference 42.

management for daily pain that is more in agreement with hospice residential setting if they are no longer able to care for
guidelines for management of chronic pain in long-term care themselves at home or do not have a caregiver, the caregiver is
settings.11,16,17 Family members of persons who died in nursing frail, or the caregiver is working and is unable to provide care
homes perceived improvements in care after hospice admis- at home. Patients may also be admitted to hospice residential
sion; they cited fewer hospitalizations and lower levels of pain care when needs for care (especially highly skilled technical care)
and other symptoms after hospice admission.18 Nonhospice are more than the family can manage at home. The same hos-
residents in nursing homes also appeared to benet from hospice services are available at the residence as in private homes.
pice presence in the nursing home. Nonhospice residents Family of patients at hospice residences are encouraged to par-
residing in nursing homes with a greater hospice presence (i.e., ticipate in their care to their level of comfort, but hospice staff
a greater proportion of residents enrolled in hospice), com- and volunteers are available 24 hours a day to provide needed
pared with those in homes with limited or no hospice pres- care, support, and assistance. The number of hospice residences
ence, were less frequently hospitalized at the end of life and is growing as communities are realizing their value in lling a
more frequently had a pain assessment performed.19,20 Consid- care need not provided in the same way in other settings.
ering the cited potential and actual benets, collaboration Children, adolescents, young adults, and the elderly can be
seems to be a care alternative worthy of pursuit. cared for in hospice residential settings. Consistent with hos-
Many hospice programs also have arrangements to admit pice philosophy, admittance to residential care should not
hospice home patients into long-term care facilities for respite depend on race, color, creed, or ability to pay. Admission to
care. Respite care is care for a limited period of time that pro- hospice residences is based on the needs and preferences of the
vides a break for the family while the patient is cared for in patient and family. Some hospice programs have admission
another setting. Wherever the patient resides, hospice philoso- guidelines that restrict their residential care option to those
phy can be incorporated and care provided by the full IDT in who are closer to death (e.g., within 2 months). However, most
collaboration with the long-term care staff. programs have found this option of care to be benecial for
The hospice IDT again advocates and supports autonomy many different reasons and have not limited its use or length
in decision-making by providing information on many alter- of stay to a specic time frame.
native care options to the patient and family when home care Hospice seeks to create a community of caring within its
is no longer appropriate. The hospice nurse and team have the residences, striving to be exible and home-like. Patients may
responsibility to educate the family about patient care needs follow their own personal schedule, and their visitors have
and to respect and support the familys ability to set limits and unlimited access. Patients are usually free to come and go as
acknowledge their own needs in placing their loved ones in they please and are encouraged to bring some of their belong-
other care settings. ings to create an environment that is most comforting to them.
The residential setting promotes community and afrms life by
Assisted-Living Settings. With the aging of the population, offering group activities, group meals, events, and celebrations
there are a variety of elder care living settings in which people that promote socialization. Patient choice in participation is
may be dying. Recent expansion of adult living facilities respected.
(ALFs) has presented the challenge to care for people while
allowing them to age in place and to die in place. In the Palliative Care Units. More recently in the United States, hos-
past, facilities licensed as ALFs were required to transfer a res- pice programs have created partnerships with acute and long-
ident out of their facility if they could not independently pro- term care settings to open or manage palliative care units. These
vide care. For many people, this removed them from their units offer a range of services within those facilities, including
home environment as they came closer to death, often result- palliative care consultation, palliative case management, care-
ing in loss of all sense of control over their lives. These resi- giver support and counseling services, and full MHB services.
dents were prevented from aging in place and dying in place. The expertise of acute care professionals coupled with that of
Recognizing the detrimental effects of moving people at this hospice professionals allows for the combined benets of both
time in their lives, residents in ALFs in many parts of the coun- systems in care of patients at the end of life. Generally, there are
try are now able to stay in the ALF until death, as long as hospice patients in palliative care units who are placed there as hospice
is involved in their care. The end result supports patient auton- patients needing acute care interventions or as transfers from
omy related to where and how the patient chooses to live until the acute care hospital settings, when a transition to hospice
lifes end. Just as in other care settings, the hospice team remains may be benecial or the palliative care expertise of hospice will
the care manager in collaboration with the family and ALF staff be benecial earlier in the disease progression, before Medicare
to advocate for the patients and familys palliative care goals. model hospice services are instituted.
Many people access acute care settings during an episode of
Hospice Residences. Emerging as another alternative setting for exacerbated symptomatology related to an end-stage or chronic
people who can no longer stay in their own home is hospice res- disease process. Depending on the response to care and prog-
idential care. Residential hospice care refers to the care provided nostic indicators, patients, families, and physicians begin to
in a facility that is staffed and owned by hospice programs. realize that conventional curative care may no longer be bene-
Patients and their families are given the choice of admission to a cial or that a combination of curative and palliative care is
optimal. Palliative care units provide an option that allows atten- mutually developed goals and interventions in some settings
tion to acute symptomatology by expert end-of-life clinicians (e.g., between long-term care facilities and hospice).
while encouraging comfort and dignity for the patients and To ensure the highest level of patient and family autonomy,
familys experience. Palliative care units provide the opportu- hospice nurses have a responsibility to educate the facility staff
nity for a smooth transition from the curative model of care to about the philosophy, principles, and practices of hospice care.
a palliative model for these patients and families. The advantage The staff should be able to integrate into their practice a dying
for the patient and family is that they are cared for by staff and patients rights and their responsibility in allowing the patient
volunteers who are competent in skilled medical care and end- to make his or her own decisions. The specialty of end-of-life
of-life supportive care. symptom management and support of the emotional and
spiritual aspects of life closure are still elusive to most nurses;
Hospital Settings and Hospice. In addition to inpatient pallia- therefore, hospice nurses are often involved in nonhospice set-
tive care consultation and case management services, inpatient tings, educating staff about protocols for pain and symptom
hospital care is an option for hospice patients and families, usu- management, as well as ways to assist patients and families
ally to meet their acute care needs. Most hospice patients admit- with the emotional and spiritual aspects of closure of their life
ted to the hospital setting are considered to be inpatients, as and relationships. Education of the staff improves the delivery
dened by the Medicare levels of care, receiving skilled care. of palliative care and makes the staff feel more condent and
Although most patients prefer to live out the remainder of their comfortable in caring for dying patients and their families, in
lives in their home, there are times when inpatient hospitaliza- contrast to the avoidance that sometimes comes from feelings
tion is requested or necessary to meet the changing needs of of inadequacy.
patients and families. To provide continuity of care, the hospice nurse should be
The reasons for hospitalization can vary. For some patients, in contact with the facility staff to ensure the patients and
the physician may request hospitalization for acute problems, familys physical, psychosocial, and spiritual status; their goals
including exacerbation of symptoms that are difcult to con- and wishes; and that their decisions regarding advance direc-
trol in a home care setting. The patient may also require hos- tives are communicated. While respecting the policies and
pitalization for palliative surgical intervention. At times, procedures of each setting, the hospice IDT must communi-
hospice patients are admitted to the hospital for a condition cate and collaborate with the patient, family, physician, and
that is not related to their terminal diagnosis. Physical needs facility staff to ensure continuity of the plan of care formu-
resulting in hospitalization vary from patient to patient and lated by the patient and family.
should be an option in response to patient need and choice.
Some patients may request hospitalization for a fracture
repair, whereas others may request to stay at home with medica-
o]
tion for pain control. In situations involving possible hospital-
Hospice Care Provided Through
ization, it is important for the hospice nurse and the IDT to be
an Interdisciplinary Team
available to explore with the patient the available choices in care
and care setting before hospitalization. The patient and family
should also remain involved in the plan of care, to determine The Hospice Experience Model: A Patient/Family
how to best meet their changing needs. It is vital that the team Value-Directed End-of-Life Care Model
provide the patient and family with other available services and
Nurses caring for patients and their families at the end of life
care options, to prevent hospitalization if that is their wish.
need to rst comprehend the basic differences between cura-
While assessing the changing needs of patients and fami-
tive approaches and palliative end-of-life approaches that honor
lies, it is also important that the hospice nurse and IDT sup-
the unique experiences of patients and families.
port patient and family choice regarding care setting and that
Within the foundation of hospice philosophy, one of the sig-
they continue to honor the patients and familys requests.
nicant differences in hospice nursing is the concept that the
Other population groups receiving hospice care are the
patient and family direct care, based on their personal values,
homeless and those in prison. These groups have posed chal-
culture, wishes, and needs. Such issues as dignity and quality
lenges for hospice programs to expand service delivery options
can be dened only subjectively, by those who are experienc-
and provide care in all of these homes.
ing life changes associated with illness, caregiving, dying, and
bereavement.
The Hospice Nurses Responsibilities The Hospice Experience Model,21 an end-of-life model based
in Facility-Based Care Settings on patient/family values, is founded on the following princi-
ples that apply to both the patient and family caregivers:
Regardless of the type of setting, the hospice nurse and IDT are
responsible for continuity of the patients and familys palliative Illness, caregiving, dying, and bereavement are unique
plan of care. When a patient is admitted to a facility, the hospice personal experiences.
IDT remains the patients care manager. Regulations also People experience the last phase of their relationships and
require collaborative care planning as well as documentation of lives through many related dimensions.
The last phase of life and relationships provides continued Ira Byock and Melanie Merriman,24 authors the Missoula-
opportunity for positive growth and development in VITAS Quality of Life Index (the only assessment tool designed
the face of suffering. to evaluate quality of life closure as an interdimensional, sub-
jective experience of the patient), have developed an end-of-
life construct based on Cassells topology of personhood. The
Principle 1: Illness, caregiving, dying, and bereavement
basis for this construct is that people experience the last phase of
are unique personal experiences.
life as multidimensional beings. As a persons physical and func-
Respecting patients individuality is the foundation of humane tional dimensions decline, quality of life can be enhanced by
care. It requires confronting the fullness of the human context attention to their interpersonal, well-being, and transcendent
in which illness and aging occur. Individual patients must be dimensions. Each dimension is briey described as follows.
the focus of attention, and their particular values, concerns, Physical Dimension: a patients experience of the physical
and goals must be recognized and addressed.22 discomfort associated with progressive illness,
Just as earlier stages of life for each individual are different, so perceived level of physical distress; also, caregivers
is dying and end-of-life caregiving. How one adapts to changes experience of their physical response to caregiving,
brought on as a result of an end-stage disease process or by the which may include fatigue or altered health as a result
normal slowing of systems associated with aging is a very per- of the effects of caregiving or the lack of attention to
sonal response. This response reects the diversity of an individ- their own health status
uals life experience, beliefs, culture, and values. Looking to the Function Dimension: a patients and familys perceived
future in end-of-life care and understanding the vast differences ability to perform accustomed functions and activities
among individuals who are in the nal phase of life, nurses must of daily living (ADLs), experienced in relation to expec-
provide care that results in individualized, customized relation- tations and adaptations to declining functionality; may
ships that respect the values, preferences, and expressed needs of include functional ADLs such as bathing, transfer, and
the patient and family in the nal phase of life and relationships. feeding, but also includes the expanded aspects of those
What one person denes as quality of life in the nal phase things that one does to function within the social con-
may differ drastically from the next persons denition or text, such as childcare, paying bills, maintaining a
differ at points in the life continuum. For one patient, self- household, and maintaining employment
determined life closure may mean not being dependent on Interpersonal Dimension: degree of investment in personal
life-sustaining machines or having a living will. For another relationships and perceived quality of ones relations
patient, it may mean being able to die at home, with family at with family, friends, and others; quality of relationships
the bedside. For the patient who has spent the last 3 years con- between the patient and others as well as the caregiver
ned to a wheelchair, it may involve dying on the screened and others; from the caregivers experience, this speci-
porch of a mobile home. cally refers to the changes in their relationship with the
The hospice philosophy of care most closely attends to patient as a result of the illness as well as the anticipated
respecting and honoring the individual experiences of caregiv- changes in the caregivers life after the patients death
ing for the family and of illness and dying for the patient. Nurses Well-being Dimension: self-assessment of internal condi-
providing quality end-of-life care must use the guiding princi- tion, subjective sense of wellness or dis-ease, con-
ples of autonomy or choice, advocacy, and acceptance to best tentment or lack of contentment, personal sense of
meet the goal of supporting individualized dying experiences. well-being, how individuals feel within themselves; may
include anxiety, sadness, restlessness, depression, fears,
sense of peace, readiness, mindfulness, acceptance
Principle 2: People experience the last phase Transcendent Dimension: ones experienced degree of
of their relationships and lives through connection with an enduring construct; ones relation-
many related dimensions. ship on a transpersonal level, which may involve, but
does not have to involve, spiritual or religious values;
The caregiving and dying experience is one that affects all
may involve ones perception of the meaning of life,
dimensions of a person. To comprehend the nature of suffer-
caregiving, suffering, death, and afterlife
ing among the dying, it is essential to know and understand
the person. Eric Cassell23 described a model for understanding Nurses must approach end-of-life care and caregiving with
suffering in his topology of personhood. In his multidimen- the understanding that a change in one of these dimensions
sional model of personhood, each person exists as a dynamic affects the other dimensions. Examining pain as a physical di-
matrix of dimensions, or realms, of the self. Each dimension mension without being prompted to determine how this has
has a signicant and dynamic impact on and relationship with affected all of the other dimensions of that persons experience
the other dimensions. Application of this dynamic relation- would not attend to the full dying experience. Examining fatigue
ship of dimensions to the last phase of life can guide the nurse of a family caregiver as a physical experience alone would not
in providing excellence in service and an optimal end-of-life allow us to understand the full experience of the caregiver. In
experience for the patient and family. both of these cases, by not examining the experiences from an
interdimensional perspective, we miss the opportunity to positive life and relationship closure can occur. There is
affect the quality of the experience. opportunity for review, restitution, amends, exploration,
An example of a hospice nurses assessment of a patients development, insight affecting all dimensions, and, therefore,
pain from an interdimensional perspective is illustrated in the end-of-life and relationship growth.
following case study. Family caregivers also experience this phase of their lives
through these related dimensions. With so many people
choosing to stay at home with family, hospice emphasizes the
9= importance of empowering families so that they can partici-
case study pate to the level they are able in providing care to the patient.
Mrs. Little, a Patient with Chronic Obstructive In order to understand and honor the familys experience, it is
Pulmonary Disease important not to take over the care but instead to provide
resources, assistance and support so family members may nd
Mrs. Little is having increasing difculty with breathing at a
the potential for deep meaning and purpose in caregiving and
self-rated level of 4 on a scale of 0 to 10 (physical dimension).
the last phase of their relationship with the care-receiver. Hos-
She can no longer walk from her bedroom to the kitchen
pices ability to involve the family in caregiving often improves
(functional dimension) and is becoming more isolated from
family members perspectives and experiences. Research has
family and friends (interpersonal dimension). Mrs. Little
shown signicant differences in favor of hospice in four mea-
becomes anxious just thinking about being alone at night and
sures used to evaluate the quality of life of the primary care-
not being able to catch her breath (well-being dimension). She
giver (family). Primary caregivers for hospice patients were
begins asking God, Why is this happening to me? What
found to be less anxious and more satised with their involve-
did I do to deserve this? (spiritual dimension).
ment in care than were their nonhospice counterparts.15
o]
Continuing with the understanding that hospice cares for Principle 3: The last phase of life and relationship
the patient and the family, the nurses interdimensional assess- provides continued opportunity for positive growth
ment of the family (Mrs. Littles daughter, Goldie, who is her and development in the face of suffering.
primary caregiver) may be illustrated in the following.
In his book, Dying Well: The Prospect for Growth at the End of
Life, Ira Byock25 wrote about the opportunities for growth and
9= development at the end of life. As a hospice physician, he
Mrs. Little awakens her daughter several times a night when shared his observations of patients and families at the end of
she gets anxious and feels short of breath, so Goldie is life. He explained how people in the face of suffering are able
becoming exhausted (physical dimension) and can no longer to personally develop a sense of completion, to nd meaning
work out of the home and care for her mother (functional in their lives, to experience love of self and others, to say their
dimension). She misses her friends and coworkers, begins to good-byes, and to surrender to the unknown.
resent her mothers demands, and sometimes lashes back at
her (interpersonal dimension). At the same time, she feels Application of the Hospice Experience Model
inadequate and states, I just dont know what else to do for
her, sometimes I dont feel very adequate as a caregiver (well- Hospice nursing involves incorporating the rst two principles
being dimension). She turns to prayer for her strength to of the Hospice Experience Model. Illness, caregiving, dying,
make it through the next day (spiritual dimension). and bereavement are unique individual and interdimensional
o] experiences of the patient and caregiver, with life and relation-
ship developmental landmarks and tasks for completion and
Referred to as interdimensional care, this approach respects closure (Table 24). The ultimate goal is to provide the oppor-
the full scope of the dying and caregiving experience and is the tunity for growth and to improve the quality of life and rela-
basis for optimally affecting quality of life and relationship clo- tionship closure for patients and families as they attend to
sure. The challenge within hospice nursing is to approach all what is most important to them before the patient dies,
interactions with patients and families with an understanding through the accomplishment of these life closure tasks.
of this dynamic, dimensional relationship. If this patients and In addition to the potential for physical distress and suffer-
familys situation were approached and assessed from a singular ing, terminal illness presents a nal opportunity to complete
symptom dimension and medical/physical perspective, oppor- landmarks and tasks of lifelong development. Quality of life is
tunities to improve the quality of life and relationship closure enhanced as the tasks are completed and the landmarks
for the patient and family in all of the other dimensions would achieved. Hospice protects and amplies the opportunity for
be neglected. personal growth in the nal stage of life, thereby enhancing
When all dimensions are assessed and the patient or family quality of life among patients and families.26
member is able to direct her or his own care and support, Dying is a part of living. The period of time referred to as
an extraordinary possibility for growth, healing, dignity, and dying can be considered a stage in the life of the individual
person and the family. Developmental psychology involves the professionals have learned differently from patients and families,
study of life stages and the related tasks to be accomplished and the Hospice Experience Model integrates those lessons by
and opportunities for growth associated with each stage. Within incorporating the framework for life and relationship closure.
our current culture, there seems to be an assumption that, Byock26 conceptualized dying as a stage of the human life
once a terminal diagnosis has been given, meaningful life has cycle that inherently holds opportunities to broaden the per-
endedyet dying and end-of-life caregiving are specic stages sonal experience, determine what matters most, inuence
with related growth tasks and accomplishments. the outcome for improved quality of life closure, and, in so
As reected in The Quest to Die with Dignity: An Analysis doing, reveal new sources of hope. He believes that indivi-
of Americans Values, Opinions and Attitudes Concerning End-of- duality extends through the very end of life, characteristic
Life Care,27 people tend to see the last phase of life as one of challenges and meaningful developmental landmarks can be
awaiting death, hoping minimally for some measure of comfort discerned, and representative tasks toward the achievement of
and not being a burden to others. This limited perspective deval- goals for life completion and life closure can be identied.26
ues and separates this last stage of life from the continuum of a Byock26 elucidated the opportunity, during this last phase of
persons existence while minimizing hopes and goals. Hospice life, for uncovering new or deeper sources of meaning in peoples
Table 24
Developmental Landmarks and Task Work for Life Completion and Life Closure
Landmark Task Work
Sense of completion with worldly affairs Transfer of scal, legal, and formal social responsibilities
Sense of completion in relationships with community Closure of multiple social relationships (employment, business,
organizational, congregational)
Components include expressions of regret, expressions of
forgiveness, acceptance of gratitude and appreciation
Leave-taking, saying good-bye
Sense of meaning about ones individual life Life review
The telling of ones stories
Transmission of knowledge and wisdom
Experience of love of self Self-acknowledgment
Self-forgiveness
Experience of love of others Acceptance of worthiness
Acceptance of forgiveness
Sense of completion in relationships with family Reconciliation, fullness of communication, and closure in each
and friends of ones important relationships
Component tasks include expressions of regret, expressions of
forgiveness and acceptance, expressions of gratitude and
appreciation, expressions of affection
Leave-taking, saying good-bye
Acceptance of the nality of life, of ones existence Acknowledgment of the totality of personal loss represented by
as an individual ones dying and experience of personal pain of existential loss
Expression of the depth of personal tragedy that dying represents
Decathexis (emotional withdrawal) from worldly affairs and
cathexis (emotional connection) with an enduring construct
Acceptance of dependency
Sense of new self (personhood) beyond Acceptance of new denition of self
personal loss Acknowledgement of the value of that new self
Sense of meaning about life in general Achieving a sense of awe
Recognition of transcendent realm
Developing/achieving a sense of comfort with chaos
Surrender to the transcendent, to the unknown, Will to die
letting go Acceptance of death
Saying good-bye
Withdrawal from family, friends, and professional caregivers
Source: Byock (1996), reference 26.

Table 25
Aspects of Completion and Closure for the Caregiver
Aspect The Caregivers Experience
Life affairs Transfer of knowledge or responsibility from care-receiver to caregiver (or to others such as family
members or legal guardian) concerning nancial matters, legal matters, and/or health care
decision-making
Respect for and advocacy of care-receivers wishes at the end of life
Relationships with Changes and/or closure in multiple formal social relationships, including employment, business,
community organizational, congregational, and educational roles
Expressing feelings regarding these changes, such as regret, gratitude, appreciation, and loss
Maintaining connections for care-receiver and self
Personal relationships Life reviewfacilitating the telling of ones story; the telling of our story, including expression of
meaning in the care-receivers life and relationships with caregiver, family, friends
Acceptance of transmission of knowledge and wisdom from care-receiver
Reconciliation of conicts with care-receiver and other personal relationships
Open, honest communication in each important relationship
Expressions of regret, forgiveness and acceptance, gratitude and appreciation, affection and love with
family, friends
Being present with the care-receiver throughout the dying process
Experience of Acknowledgmentafrmation and appreciation of self as a caregiver and as an individual
love of self and others Forgivenessself-forgiveness; forgiveness to care-receiver, others, a higher power or spiritual entity;
and acceptance of forgiveness from care-receiver, others, spiritual entity/higher power
Worthinessworthy of giving and receiving love, of assistance with caregiving, of self-care
Acceptance of strengths, limitations; realistic expectations of new role as caregiver and value of that
role, of self beyond caregiving, of self as individual
Acceptance of the Acknowledgment of the personal loss and personal tragedy represented by care-receivers dying
nality of life Anticipatory griefexperience pain of loss (all losses, loss of care-receiver)
Acknowledgement and/or acceptance of care-receivers impending death
Letting gogiving permission to die, assurance of caregivers well-being, saying good-bye
Understanding and/or acceptance of care-receivers withdrawal from worldly affairs, family, friends,
and caregivers and transition to the unknown
Closure of relationship with care-receiver
Meaning of life Achieving a sense of awe about the journey, death and life
Attending to the spiritual elements, including recognition of life after death, recognition of a higher
power, a connectedness with something greater than oneself, and/or spiritual growth, spiritual peace
Acceptance of constant changes in life, growth in experiences
Sense of meaning and purpose as a caregiver and in life
Bereavementloss, Loss of role as caregiver
mourning, and grief; renewal, Tasks of grief
resocialization New self beyond caregiver role
New denition of self
Acknowledge, value, and accept the new self
Readiness for new life
New self in personal relationships and community
Moving on
Source: The Hospice Institute of the Florida Suncoast (2003), reference 43.
lives and in their dying. It is important that a developmental family chooses to attend to or accomplish these tasks will be
approach to the end of life not be misconstrued as a set of pre- specic to what is most important to them at this time in
scribed requirements. Rather, these landmarks and tasks can their lives, as reected by their values, goals, and needs.
become part of a conceptual framework in which to approach The developmental landmarks and task work for life com-
end-of-life care processes, systems, and relationships. They can pletion and life closure that Byock26 dened provide direction
provide a common language and common approaches to for care in the nal phase of life (Table 24). They reect the
ensure patient/family valuedirected care that optimizes gradual process of life transition from worldly and social
quality of life and relationship closure. How each patient and affairs, to individual relationships, and to intrapersonal and
transcendent dimensions. In a landmark national research their personal encounter with illness, caregiving, death, and
project, Caregiving at Lifes End, a national needs assessment bereavement.
of hospice family caregivers conrmed the hypothesis that Salmon and colleagues28 conrmed the positive aspects of
family caregivers also experience these aspects of completion caregiver relationship closure through their research with hos-
and closure (Table 25), and the more they experience these pice family caregivers. They found that hospice family care-
aspects, the greater gain they have in the end-of-life caregiv- givers did the following:
ing experience.28 What was also learned was that the more
caregivers feel they can have an impact on the life closure Indicated that they want practical information about
aspects for the care-receiver, the more meaning they them- caregiving, such as information that helps them to
selves nd in the experience of caregiving. The aspects of understand the illness, know how to give medica-
completion and closure are closely interrelated for the patient tions, make end-of-life decisions, communicate with
and family caregiver, as illustrated in case examples shown in health care professionals, and give hands-on care.
Table 26. Valued and felt comfortable with tasks such as
These tasks and landmarks can offer a guide for profession- understanding the illness and giving medications.
als caring for patients and families in the last years of life. By Wanted to know what to expect at the time
rst opening dialogue about the possibility of meaningful of death.
experiences related to these landmarks and tasks, we acknowl- Experienced greater caregiver gain when comfort-
edge and validate the patients and familys experience. As with able with what are known as the transformative
other developmental stages in life, developmental tasks are tasks of caregivingnding meaning and purpose,
best accomplished with optimal interventions and in a sup- feeling closure, and self-acceptance.
portive environment. As with a toddler who is learning to walk
or talk, a safe, encouraging, and nurturing environment is These results support the principle of opportunity for gain and
essential to safe accomplishment of these tasks. The hospice positive experiences in the face of suffering and clearly indicate
approach to the relationships among the patient and the fam- the unique value of hospice services for family caregivers.
ily or other caregivers becomes one of providing interventions
that create optimal, safe, nurturing environments to facilitate
work on life and relationship closure tasks to the extent that o]
they choose, are interested, and are able to engage. The Experience of Illness and Dying: Nursing
As nurses, we have the responsibility to attend to the phys- Process from a Hospice Perspective
ical and functional dimensions of care while supporting issues
of life closure in the other dimensions so that patients and Hospice nursing involves three broad areas: (1) approaching
families can accomplish the end-of-life developmental land- care from a patient- and family-based, interdimensional care
marks to the extent that they choose. Accordingly, the hospice focus, as described earlier; (2) expertise in end-stage disease
nurses initial role in end-of-life care is to work with the and symptom management; and (3) applying the nursing pro-
patient and family to prevent or minimize the suffering that cess as a member of the hospice IDT through a critical think-
results from the physical and functional decline of advancing ing approach that supports the Hospice Experience Model.
age or from end-stage disease progression. It is after these End-stage disease and symptom management present a
dimensions are addressed and managed that the patient and unique challenge for many nurses when they begin hospice
family can attend to life- and relationship-closure tasks and nursing. This challenge involves incorporating norms for dis-
landmarks that they feel are important and that involve the ease progression and symptom management different from
interpersonal, well-being, and transcendent dimensions of those applied in a curative model. Symptoms that are consid-
their experiences. ered abnormal in a curative approach may become the
Although each patient approaches these landmarks and expected norm for a person who is dying.
associated task work in his or her own way, there are some Pharmacological interventions for pain and symptom man-
common aspects. Generally, patients rst accomplish the few agement are emerging as a body of knowledge that has not yet
landmarks or tasks that relate to separating from and settling been integrated well into the nursing curriculum. Nonpharma-
worldly affairs and community relationships, before the tasks cological interventions that are considered appropriate for a
involving moving away or separating from friends and family patient on a curative path may actually increase suffering for a
and, nally, those tasks marked by introspection. As people patient who is dying. An example may be encouraging intake
get closer to death, it is common to observe a gradual with- of food and uids. For a curative approach, this is appropriate
drawal from worldly relationships, friends, and family as they to increase strength and healing. When a patient approaches
begin the transition on their individual journey from life to death, however, the bodys systems are slowing. This slowing
death. The nurses goal is to explain and normalize this results in a decreased caloric requirement as well as a slowing
experience, thereby recruiting the IDT and family members of uid perfusion. By forcing food and uids, we could
to help preserve the patients and familys opportunities to increase the demands on the gastrointestinal and circulatory
experience peace and comfort within themselves during systems, thereby creating increased discomfort. It becomes the
Table 26
Interrelatedness of Care-receiver and Caregiver Tasks
Care-receiver and Caregiver Tasks Example of Interrelatedness (see Tables 24 and 25)
Care-receiver: Sense of completion Care-receiver: Mr. Kent, the patient, wants

with worldly affairs his son (caregiver) to have power of attorney
Transfer of social to manage his wifes nancial accounts.
responsibilities Mrs. Kent has dementia, and he is concerned about having
money available for her continued care after he dies.
Caregiver: Life affairs
Caregiver: Mr. Kent, an only child, does not want his dad to
Transfer of knowledge and/or responsibility worry. He is willing to be the primary caregiver for his mother
Advocacy of care-receivers wishes after his dad dies. He knows he will need to be able to manage
the family money so that it is available for her care at home if he
must hire additional help or if he needs to place her in a long-
term care facility.
Care-receiver: Sense of completion Care-receiver: Mr. Jay wants to sell his business to his partner,
in relationships with community because he can no longer attend to the clients.
Closure of multiple social relationships Caregiver: Mrs. Jay does not want the business to be sold,
Expression of feelings especially because her husband worked so hard to make it
Leave-taking successful. She was employed in the business until her spouse got
Caregiver: Relationships with community very sick and could no longer care for himself. She feels she lacks
some of the skills to be a partner but could learn. She is hesitant
Changes and/or closure in multiple social relationships to ask her husband about it, because he is so ill. She very much
Expressing feelings wants to spend time with her husband right now and has no
Maintaining connections time to attend to work. She feels she is losing both her husband
and the family business.
Care-receiver: Sense of meaning about ones individual life Care-receiver: Mrs. Thomas is widowed and lives alone on the
Life review family farm. She has two daughters, both living in distant cities,
Telling ones story having left the state for college, started careers, and seldom
Transmission of knowledge and wisdom returned to the family home. When Mrs. Thomas became bed
bound, her daughter, Judy, came to care for her and intends to
Care-receiver: Sense of completion
share the caregiving with her sister. Mrs. Thomas tells stories
in relationships with family and friends
about the girls childhoods, trying to understand what she did to
Reconciliation, fullness of communication, and closure make her children want to leave the farm. She also tells stories
Expression of feelings about her own childhood and growing up on the family farm,
Leave-taking her fame as the best cook in the county, and her willingness to
Caregiver: Personal relationships take in stray animals. Judy is a successful corporate lawyer.
Facilitating the life review Mrs. Thomas feels the need to relay to her daughter that success

Acceptance of transmission of knowledge and wisdom is not measured by money but by being good to all creatures

Reconciliation of conicts great and small.

Open, honest communication Caregiver: Judy has taken a leave of absence from work to care
Expression of feelings for her mother for a month. She is very concerned about her job
and corporate clients while she is away. When Judy returned
home, she noticed the peace and quiet of her family home. As
her mother told stories about her life and raising her and her
sister, Judy realized how little she knew about the family tree and
family history. She began to ask other questions about the family.
As her mother provided advice about success and felt such
accomplishment in what Judy considered little things, Judy
began questioning her own accomplishments and whether they
really made a difference in anyone elses life. She began to
examine her role as a caregiver and the difference it was making
in her mothers life.
(continued )
Table 26
Interrelatedness of Care-receiver and Caregiver Tasks (continued )
Care-receiver: Experience of love of self Care-receiver: Mrs. Snider is dying from breast cancer, and her
Self-acknowledgment husband is her caregiver. Their son died when he was 4 years
Self-forgiveness old; he drowned in the backyard pool while in her care. She was
never able to forgive herself for the death of her son, and she
Care-receiver: Experience of love of others
believes her husband never really forgave her in the 50 years they
Acceptance of worthiness have been together since that awful time. He grieved hard, and he
Acceptance of forgiveness punished her for her sons death by never really letting go of the
Care-receiver: Sense of a new self beyond personal loss grief. She feels she missed life because of her guilt and her
husbands grief. With the help of the chaplain, Mrs. Snider has
Acceptance of new denition of self
been able to forgive herself for her sons death, and she is glad
Acknowledgment of the value of that new self
that after death she will be reunited with him. She also realizes
Caregiver: Experience of love of self and love of others that her love of her husband allowed him to stay a shut-in,
Acknowledgment because she did not want to hurt him any more by leaving him.
Forgiveness She only wishes he could forgive her. She did the best she could,
and that is worth something.
Caregiver: After the death of his son, Mr. Snider felt he had no
other reason to live. His legacy was gone, and he and his wife
could not have any other children. They were so grief-stricken
that he felt the need to protect both of them from the outside
world, which became a lifelong pattern. They depended on each
other for everything, never asking for help and never socializing
with anyone. Since he lost his son, he has had difculty loving
anyone for fear he would lose them. Now he is losing his wife.
Even though he tried not to love her for not being there when his
son fell into the pool, he nds he still loves her. For the past
50 years, however, he has not shown his love to her. He also did
not know he could care for anyone the way he has been able to
care for his wife throughout this illness. The chaplain who visits
is helping him feel better. He realizes that his grief ltered down
to his relationships, and that it was okay to miss his son. He feels
he had no right to punish his wife for this long; holding onto her
so tightly to keep from losing someone else was not intentional
and was a sign of love. Could she ever forgive him? He needs to
show her his love and ask her forgiveness for his past actions. He
is worried about life without herhe will have no one if he
doesnt act now. Perhaps he will call his sister to help.
Care-receiver: Acceptance of the nality of life Care-receiver: Here she was, dying. She was so saddened to be
Acknowledgment of personal loss leaving her kids, her husband, and her mother and father behind.
Expression of the depth of personal tragedy that There had been so much she wanted to do, such as seeing her
dying represents children grow up and become mothers and fathers. She wanted
Decathexis and cathexis to hold her grandchildren. She wanted to take care of her
Acceptance of dependency husband forever and her parents in their old age, not have her
husband and parents take care of her. She wanted to learn how to
Care-receiver: Surrenderletting go
play the piano. She would never be able to do any of these things.
Will to die She could not even bathe or dress herself. The pain had become
Acceptance of death unbearable, and watching herself deteriorate was even more
Saying good-bye difcult. Flo counted on her faith and put all her troubles, the
Withdrawal from family, friends, and professional care of her children, and the care of her parents into Gods
caregivers hands. There was no turning back, and she began to welcome
Caregiver: Acceptance of the nality of life death. She said her good-byes and wrote letters to her children to
be opened on special occasions after her death. She even wrote
Acknowledgment of personal loss/tragedy
her memoirs so they would know the kind of person she was. She
Anticipatory grief
hired a nanny for the kids so that her husband could focus on his
(continued )
Table 26
Acknowledgment and/or acceptance work and grief, and she gave him permission to remarry. As she
of the care-receivers impending death became more ill, she withdrew and focused more on God and on
Letting goacceptance of care-receivers withdrawal the possibility of heaven and life after death. She was ready to die
Closure of relationship with care-receiver and wished God would take her now.
Caregiver: Michael was grieving the loss of his wife, his high
school sweetheart. He had loved her forever. He had no idea how
to raise the kids without her, how to go on without her. He had
lost his future. He knew there was nothing more that could be
done, and he was trying to support her as she prepared for her
death. She was quickly withdrawing from everyone, including
him, as she moved closer to death. She had asked him if he would
be okay without her, and he had always said not to say that,
because he would love her forever. He knew he had to say
good-bye and tell her that he and the kids would be okay. But
would he be okay? He did not think so, but perhaps she would
help him from wherever she was. He said good-bye, and she died
3 hours later.
Care-receiver: Sense of meaning about life in general Note: The care-receiver and the caregiver usually do not go
Achieving a sense of awe through this stage at the same time. The care-receiver usually
Recognition of transcendent realm nds meaning in life before he or she dies, whereas the caregiver
Developing/achieving a sense of comfort with chaos may not nd meaning in life until after the death, sometimes as a
result of paralleling the care-receivers journey and observing
Caregiver: Meaning of life
him or her make sense of death and look to the unknown with
Achieving a sense of awe comfort. The care-receiver nds comfort with the chaos that
Attending to the spiritual elements surrounds dying, whereas the caregiver realizes after the death
Acceptance of constant changes in life, growth in that change is constant, that it is still affecting him or her, and
experiences that growth can result from change. In addition, while the care-
Sense of meaning and purpose as a caregiver and receivers focus becomes death, the caregivers focus becomes one
in life of lifea sense of awe about life, a new-found appreciation for
life, a purpose in life (possibly a feeling of connectedness
between this world and the next or between the self and a higher
power or the universe). The caregiver may also nd spiritual
peace as he or she begins to feel that everything is connected, that
there is meaning and purpose in caregiving and in life.
Care-receiver: Freds health was declining rapidly. He became
weaker and slept more. He was not eating and was taking only
sips of uids. He felt as though there was nothing more to do,
nothing more to say, and he had somehow accepted death. He
was comfortable with who he was and what he had accomplished.
He felt in awe about life and what a wonderful gift it was to be
able to live, but he also sensed that there was something greater,
something beyond this place. While his daughter was running
around and fretting about her job, her income, how much she
had to do, and managing all his care and the community services
he received, he found himself relaxing and actually trying to
comfort her. He thought she was dumbfounded by how calm he
was about dying. He was not sure he even knew why he was so
calm, except that he knew there was nothing more he could do or
had to do, and he instinctually felt that there was something
beyond this world, something waiting for him, someone waiting
for him. He hoped it was his wife and his favorite dog.
(continued )
Table 26
Caregiver: Katie missed her dad terribly, but she was glad her dad
had died comfortably and peacefully. She felt as though he had
somehow resigned himself to death a few weeks before he
actually died. He tried to explain to her that he was not afraid
and that she should take life less seriously, but she did not quite
understand what he was saying, or perhaps she was too busy to
think about it. She now felt privileged to have been a part of his
life, his care, and his death. She never thought she could do it,
but she had, and she very much wanted to tell other caregivers
about how special it could be. Death was not as bad as she had
thought it would be, either. It seemed so natural, and she felt
such a sense of relief when her dad began talking to her mother,
who had been deceased for 5 years. She felt a sense of hope about
life after death, and a sense that life had a purpose even if she was
not sure what that meant for her in the future. It would come to
her; she just needed some time to grieve rst. She also felt a
renewed appreciation for life and hoped to enjoy it more fully
when she felt physically and emotionally able.
Caregiver: Bereavementloss, mourning, Note: Although the care-receiver is not physically present, the
and grief; renewal, resocialization caregiver still honors and respects the memory of the deceased.
Loss of role as caregiver Caregiver: After the death of her partner, Joanne went through
Tasks of grief the stages of grief. It took her almost a year before she realized
New self beyond caregiver role she was no longer a caregiver or the same person she had been
New denition of self before Susan died. She was partly her old self and partly
Acknowledge, value, and accept the new self someone stronger, more self-sufcient, and more appreciative of
Readiness for new life life. She now volunteers with the local branch of the Red Cross.
New self in personal relationships and community She would never have given volunteering a thought before Susan
Moving on died, but now she wants to make a difference in the lives of
others. She still thinks about Susan frequently, especially during
holidays and their anniversary, and when she is on the beach.
The beach was where she and Susan met and where they shared
their favorite activity of windsurng. Just a few weeks ago,
Joanne began windsurng again. She hadnt done that since
Susan became ill and she began caregiving. She also changed jobs
to one she enjoyed. She likes her new self. She still visits the
gravesite every month to change the owers and to honor the
memory of her loved one. Lately, she has been thinking about
dating again. She feels as though she will never nd anyone like
Susan and isnt sure she could love that deeply again, but she
would enjoy some companionship.
Source: Adapted from Hospice Institute of the Florida Suncoast (2003), reference 43.
responsibility of any nurse caring for patients at the end of life this perspective, we begin to move away from a traditional,
to gain specic knowledge and competence in end-stage dis- problem-oriented approach to a quality-of-life and relationship
ease and symptom management. closureoriented approach. All of the care processes and tools
must therefore prompt a different critical thought process.29
Critically Thinking Through the End-of-Life Each step of the hospice interdimensional care process
Nursing Process (assessment, care planning, goal setting, interventions, and eval-
uation) must involve three critical questions:
Illness, caregiving, suffering, dying, and bereavement evoke
many interdimensional changes and reactions for both the Are we approaching care based on the patients and familys
patient and the family. By looking at the patient and family from experience, values, goals, and choices?
How does an issue, problem, or opportunity in one dimen- and the cause is identied. In this step, hospice differentiates
sion affect the other dimensions of the patient and family? between denitions of problems that are expected norms for the
How does an issue, problem, or opportunity affect the dying process and those that are unexpected or may cause sec-
patients or familys quality of life and relationship ondary suffering for the patient or family.
closure? For example, a patient may become incontinent as her or
his systems fail and death is imminent. This is an expected
The main steps of the hospice interdimensional care process
physical change during the dying process. Assessment of this
are similar to the nursing process but with a focus on preventing
using an interdimensional approach might determine that the
and managing suffering and on quality of life and relationship
problem is the potential for skin breakdown (with the cause
closure rather than rehabilitation or cure. Nurses must also look
being incontinence), rather than incontinence as the primary
beyond problem identication as they apply the interdimen-
problem secondary to advanced disease. Another problem or
sional care process and anticipate changes to prevent suffering
issue may be that the spouse is exhausted from being awake
while preserving opportunity for growth. At each step of the
all day and night changing the patients linens secondary to
care process (assessment, planning, intervention, and evalua-
incontinence of the patient. What a nurse may instinctively
tion), the three critical thinking questions must be applied.
identify as a problem in a curative model often becomes the
cause of a problem in end-of-life care.
Integrating the Nursing Process with the Hospice Another important difference in hospice nursing is that
Interdimensional Care Process problems, issues, or opportunities are assessed and identied
beyond the physical and functional dimensions, including the
Incorporating the nursing process into an interdimensional following for both patient and family:
care process further denes the specialty of hospice nursing in
that it involves the nurse working as a collaborative member of Physical symptoms and prevention of related suffering
the IDT and expands the picture of the nursing process to an Psychosocial symptoms and prevention of related suffering
interdisciplinary interdimensional care process. All disciplines Spiritual symptoms and prevention of related suffering
on the hospice team are valued, and their expertise is com- Accomplishment of developmental tasks of life and relation-
bined to apply the hospice interdimensional care process. The ship completion and closure to the extent that the patient
steps of the hospice interdimensional care process are outlined and family choose to participate
in the following paragraphs. Issues and opportunities in the family dynamics and relation-
ships
Issues of grief, loss, and bereavement
Step 1: Performing Interdimensional Assessment
Functional status and environmental status
Assessment begins with discussion soliciting information about This step also involves determining the cause of the prob-
the patients and familys situation, including the values, wishes, lem, issue, or opportunity. The cause of a medical problem can
and dreams that they identify as important. Data collection often be identied through physiological changes, but nurses
assesses all dimensions of a person and family as well as how must also take into consideration other causes related to all of
changes in those dimensions affect the quality of life closure. the dimensions. For example, a patient with end-stage chronic
Traditional nursing physical assessment is accomplished dur- obstructive pulmonary disease (COPD) may complain of
ing this step, using norms for end-stage disease and symptom shortness of breath. Initial reactions would be to identify the
management. problem as shortness of breath secondary to ineffective air
Subjective and objective data are collected from a palliative, exchange in the lung. Again, in end-stage COPD, this is an
comfort care perspective and based on what patients and fam- expected norm. With further interdimensional assessment, the
ilies dene as important to them at this time. Their identied patient identies episodes of shortness of breath secondary to
goals become the focus and driving force for the hospice team. anticipated fear of being alone at night. Obviously, the inter-
The focus of a palliative care assessment is to ask the ques- ventions are different if the full dimensions are assessed and
tion, What is happening that is helping or hindering this the patients and familys experiences direct the process.
patient and family from reaching their end-of-life goals? The cause of a problem that is not physiologically based
From that perspective, the IDT supports integrated family sys- can often be attributed to the patients or familys adaptation
tems theory, supporting the strengths of the patient and fam- to the current situation or unnished personal conict. In this
ily while providing options for resources in areas of challenge. step, opportunities can also be identied for prevention of
problems or issues, or situations can be presented that would
Step 2: Identifying Specic Issues, Problems, and enhance personal growth and completion of life and relation-
Opportunities and Their Causes ship closure tasks.
For example, a patient with COPD who was imminently
The next step involves identifying specic issues, which is com- dying was becoming progressively anxious, with increased
parable to developing the nursing diagnosis. A specic issue, episodes of shortness of breath despite all medical interven-
problem, or opportunity is dened from a palliative perspective, tions. On assessment of this problem, the patient shared that
he had a son to whom he had not spoken in more than 20 years. of care belongs to the patient and family; therefore, goals should
The patient was afraid of dying before mending that relation- be articulated from their perspective, not the nurses perspective
ship, apologizing to his son, and letting him know he loved him. of how things should happen. Goals articulated by hospice
The hospice team assisted in locating his son and arranging for patients and families may include such things as being able to
a visit. The patient and son were able to spend time together, care for a spouse while he or she is bedridden or ranking pain as
give and receive forgiveness, and, in so doing, mend their rela- 2 or less out of 10 at meal times so that the patient can join the
tionship. The patients unnished relationship issues and family at the table. Articulating goals from the perspective of the
related anxieties were the cause of his physical episodes of short- patient and family makes it apparent what direction each mem-
ness of breath. Hospice nursing involves a holistic approach that ber of the IDT should take to collaboratively help them meet
realizes the potential effect of one dimension (e.g., interper- their goals. It also becomes apparent that the IDT as a group, not
sonal) on all other dimensions and ensures that the nursing one discipline alone, is equipped to deal with complex issues
assessment gathers and uses all dimensional changes for opti- associated with dying and bereavement.
mal interventions. Life and relationship completion and closure goals relate to
the end-of-life accomplishments, the completion of unnished
Step 3: Planning Interdisciplinary Team Care business, landmarks and tasks of dying, the emotional and
spiritual separation between family and patient, and antici-
Interdisciplinary care planning is a process that occurs from pated changes for the caregiver after the death. Hospice nurses,
the time the patient is referred through the familys bereave- as part of the IDT, add their expertise to support the patient
ment period. It occurs both in formal IDT care planning and family in accomplishing life and relationship closure goals
meetings and, between meetings, as patient and family needs through disease and symptom management as well as emo-
change and members of the IDT collaborate on care. Patients tional and spiritual support. An example of a life-closure goal
and families are assessed by the nurse and by a psychosocial pro- as dened by the patient may be to take one last trip to visit and
fessional on admission. As the care plan is developed, each dis- say good-bye to family and friends. The nurse may be involved
cipline blends its own area of expertise with those of other team by teaching energy conservation, the use of portable oxygen,
members to formulate shared interventions that support the transfer techniques for car transportation, or titration of med-
patients and familys goals. ications to ensure comfort. Life and relationship-closure goals
Similar to the nursing process, this step involves planning may also include creating a memory book for my grandchil-
the care, including identifying patient and family goals and the dren to have when Im gone or being forgiven by a spouse for
appropriate staff and facilities; determining the best interven- a life transgression. Again, the focus becomes the patients and
tions; and devising a team plan for providing services. The key familys goals as they relate to life and relationship-closure
components in this process are collaboration, patient/family- tasks; the nurse collaborates with other team members, such as
directed goal setting, and IDT planning of interventions. the psychosocial counselor or chaplain, to help the patient and
family accomplish these goals.
Collaboration. Collaboration builds an interdisciplinary aware- Clinical obligation goals are identied by the IDT only in
ness of interdependence with a common mission, values, and those situations in which the patient or family is unable to
patient/family goals for optimal care. Collaboration is essen- identify the problem or issue. These goals are strictly related to
tial for all hospice professionals as they stimulate each other clinical obligation situations such as neglect or suicide, in
and innovative ideas and interventions are formulated. One of which the team must establish goals to ensure the patients or
the key reasons for IDT collaboration is to share assessment familys safety.
data and feedback that each member was able to solicit from
the patient and family so that a comprehensive interdimen- Interdisciplinary Team Planning of Interventions. Interventions
sional care plan can be established and mutually understood are based on interdimensional assessment, with the overall
by all team members caring for that patient and family. The goals of reducing or preventing suffering and accomplishing
hospice nurse therefore collaborates rst with the patient and life and relationship closure in a way that is important and
family to determine their goals, and then with other IDT meaningful to the patient and family. Directed by the goals of
members to ensure a holistic approach to continuity of care. If the patient and family, and with their input and approval, the
the patient is residing in a facility, the nurse must also include hospice nurse and the other IDT members collaborate to deter-
the staff of that facility in care planning. Collaboration ensures mine the optimal interventions that would move the patient
continuity of care. and family closer to their goals.
The interdisciplinary planning process involves determining
Patient/Family-Directed Goal Setting. A comprehensive plan which discipline, or combination of disciplines, is most appro-
is developed according to three types of goals: (1) patient/ priate to assist patients and families in accomplishing their
family goals, (2) life and relationship-closure goals, and (3) goals. Some patients and families may allow only one or two dis-
clinical obligation goals. ciplines to be involved in their care. Some individuals expect
Primarily, the care plan should be directed by what the nurses to provide care and are not always open to visits from
patient and family have dened as their goals. The hospice plan social workers or chaplains. The nurse in these situations may
be the sole team representative, incorporating the expertise of family about expected changes. Common responses to each
all disciplines. If this happens, it becomes crucial that mem- stage of the disease and related interventions to decrease suf-
bers of the IDT collaborate and share expertise so that interfering are taught so that the patient and family are optimally
disciplinary care can still be delivered and the patients and prepared before the changes occur. When patients and families
familys goals can still be addressed. The nurses role may then know what to expect, hospice can help to prevent or reduce
include facilitating the involvement of the team to the degree anxiety related to the unknown. Critical to the specialty of
that the patient and family are comfortable. hospice nursing is the ability to be comfortable having conver-
sations with patients and families about the aspects of life and
relationship closure, offering opportunities for them to iden-
Step 4: Providing Interventions to Meet Patient
tify what is most important and nding ways to support their
and Family Goals
goals in these aspects.
The hospice care plan involves interventions in four areas: pal- Another crucial goal of education is to provide information
liative therapeutic interventions, educational interventions, and support so that patients and families can advocate for
collaboration interventions, and assessment interventions. themselves in all care settings, with other providers, and with
other family members.
Palliative Therapeutic Interventions. Palliative therapeutic Collaboration Interventions. Crucial to ensuring unied deliv-
interventions include those that have been identied to be ery of care to patients and families is the practice of collabo-
conducive to meeting the patients and familys goals. These ration. In planning interventions, it is crucial to ensure that
include both pharmacological and nonpharmacological inter- the patient, the family, and the professional caregivers are all
ventions to best address the interdimensional adaptation and involved. Caregivers include IDT members, facility staff, attend-
goals of the patient and family. ing and consulting physicians, therapists, and the family. For
Hospice nurses must always be aware of not only the tradi- example, the hospice nurse collaborates with the attending
tional medical interventions but also those interventions spe- physician about the need for medication for symptom manage-
cic to the specialty of end-of-life care that support quality of ment or with facility nurses to educate and ensure around-the-
life and relationship closure. An example is a patient who had clock administration of pain medications. If a hospice patient
a stroke that left him aphasic of both spoken and written is residing in a nursing facility, the hospice nurse must collabo-
word. During his lifetime, he had kept a scrapbook of national rate with the nursing facility staff, communicating and docu-
newspaper articles, including articles and current events jour- menting the outcome of that collaboration. Communication of
nals. In the scrapbook, he had written his perceptions of how these interventions is paramount to ensure continuity of care
an event may have been signicant to his daughters life. To among team members, caregivers, and care settings.
assist this patient in nding meaning and purpose in his life,
the nurse requested a volunteer to help the patient engage in Assessment Interventions. The nal type of hospice nursing
life review. The volunteer visited the patient, reading the arti- intervention is ongoing assessment necessary to determine
cles and the patients philosophical messages to his daughter whether continuation of the care plan is effective or optimal.
related to each event in the history of their life together. For hospice nursing, this may include closely monitored titra-
Through the reading of these scrapbooks, the patient was able tion of opioids for pain control or respiratory status to deter-
to sense his contribution and value as a parent. mine effective doses as symptoms change or the patients
Again, hospice nursing is based on a holistic approach and needs change throughout the trajectory of illness.
the understanding that life closure is an interdimensional
experience for both the patient and the family.
Step 5: Evaluating Interventions and Continuation
or Revision of the Care Plan
Educational Interventions. As with all nursing practice, patient
and family education is a cornerstone of hospice nursing. With the patient and family as the core of the hospice team,
Because most patients followed by hospice do stay in their evaluation begins with their perspective of the effectiveness of
homes until death, the primary role of the hospice team is to the care plan interventions in meeting their end-of-life and
empower the patient and family caregivers so that they can relationship closure goals. Do the interventions help them to
develop the skills to comfortably provide care and nd mean- reach their goals? What has been most benecial from their
ing and purpose in the experience. perspective? What do they want to continue or discontinue? As
The nurse becomes involved in education of the patient with all other steps in the care process, the patient and family
and family as it relates to personal care, prevention of prob- direct the care. Therefore, it is crucial that the hospice nurse
lems such as skin breakdown, administration and manage- involve the patient and family in evaluating the effectiveness of
ment of medications, nonpharmacological interventions such the care plan interventions on an ongoing basis.
as therapeutic touch, application of heat, breathing exercises, By evaluating and documenting the effects of interven-
and functional assistance with ADLs. As the patients disease tions, the hospice nurse shares his or her expertise as a valued
progresses, the hospice nurse is also involved in educating the member of the IDT. If the current care plan is effective at
meeting the patients and familys palliative care goals, then these varied needs of patients and families, provides the most
interventions continue. If interventions do not meet the patients effective holistic approach to end-of-life care.
and familys goals, then the hospice nurse collaborates with the In a traditional multidisciplinary approach to patient care, a
patient, family, and IDT for additional assessment and identi- member representing each discipline visits the patient and for-
cation of meaningful goals. mulates goals depending on his or her own area of expertise.
Illness, caregiving, dying, death, and bereavement are expe- The patient and family may not always be considered together
rienced in unique, personal ways. Hospice care allows for the as a unit of care, and the specic goals of one discipline are not
patient and family to direct the care based on their own values, always shared by the other disciplines caring for the patient.
goals, and needs. A signicant difference between traditional Often, one discipline is the case manager, having more direc-
nursing and hospice care is the involvement of the patient and tion and input than the others in the care-planning process.
the family as they guide the hospice IDT in providing pallia- This lack of collaborative care planning and goal setting can cre-
tive care and services that are most meaningful to them. ate an inconsistent approach that lacks cohesion and continuity
and often frustrates those receiving care. The focus is on the
discipline (e.g., nurse, social worker) rather than the patient
o] and family. In the interdisciplinary approach to care, the nurse
Key Elements of a Hospice Palliative Care Program coordinates the plan of care with the patient, family, and other
members of the IDT to effectively mobilize each others skills to
Purpose and Process of Interdisciplinary meet patients needs in a variety of healthcare settings.30
Team Care Management The hospice IDT model improves on the multidisciplinary
approach with a process that allows for the following:
In The Hospice Handbook, Larry Beresford stated, The glue
Patient and family direction of care and
that holds together this hospice approach to care is the inter-
services and involvement in decision-making
disciplinary team.5 The primary purpose of the IDT model of
in all aspects of care
care management is to build a caring community between the
Determination of patient/family valuedirected
patient, the family, and the hospice team. This integrated com-
care plan goals
munity is responsible for responding to the patients and fam-
Collaboration of expertise from varied disciplines
ilys dynamic needs 24 hours a day, 7 days a week. The entire
to meet patient/family goals
IDT is accountable for the physical, psychosocial, spiritual, and
Identication of interventions that support
bereavement needs of both the patient and the family, ensuring
patient/family goals
that the palliative care plan is carried out across all care settings.
Role blending of expertise among disciplines toward
Because the physical, psychosocial, spiritual, and bereave-
common patient/family goals and outcomes
ment needs of patients and families are inseparable, the inter-
disciplinary approach is also the hospice approach to care. The The IDT model provides optimal interdimensional care by
team, not just the hospice nurse, becomes the care manager. jointly assessing and determining goals and sharing ideas for
The patient, family, and IDT are equally important in problem interventions with the patient, the family, and all team mem-
solving and goal formulation, collaborating with each other for bers working toward common goals and interventions. The
expertise and input into care planning. The hospice approach is success of the hospice IDT model lies in the partnership
a holistic care process that is directed by the patient and family between patient/family and care professionals that best reects
to best meet their interdimensional needs. the full scope and experience of illness, caregiving, dying, and
Care management by the IDT is a process, not an event. bereavementfocusing on the choices, goals, wishes, and
This process begins at the time the patient is admitted to the experiences of the patient and family.
hospice program and continues until well after the death of
the patient, through bereavement services for the survivors. The Hospice Interdisciplinary Team Structure
Effective IDT care management promotes daily, ongoing col- and Role Blending
laborative practice that incorporates shared goals, care plan-
ning, role blending, and shared leadership. The structure of the hospice IDT is designed to meet the interdi-
mensional needs of patients and families. To be most effective,
Interdimensional Care Delivered care teams must be designed to honor the experience of the
by an Interdisciplinary Team patients and families they serve. End-of-life care teams, the disci-
plines that comprise the IDT, and how they function as a collab-
Chronic illness, aging, and terminal illness affect patients and orative team mirror the patients and familys complex experience
families not only physically but psychologically, emotionally, of life-limiting illness, caregiving, dying, death, and bereavement.
spiritually, and nancially. To provide effective, quality hos- Collaboration as an IDT focuses on transforming the patients
pice care, all of these dimensions of the dying experience and familys end-of-life experience. The critical components of
should be addressed. An IDT, incorporating the expertise of this interdisciplinary model can and should be offered in all set-
members from several disciplines who are trained to meet tings of care for patients and families near the end of life.31
As previously discussed, a number of dimensions dene of the critical aspects of providing competent end-of-life care.
the full experience of patients and families. The related dimen- The nurses primary role involves managing and preventing the
sions and the corresponding staff that form an effective hos- physical and functional decline, to reduce suffering so that
pice/palliative care team include the following: the patient and family can attend to activities that promote
quality of life and relationship closure.
Physical dimension: physician, nurse, pharmacist,
The hospice nurse is also responsible for supervising related
therapists, nutritionist, and volunteers
nursing personnel, including licensed practical nurses, certi-
Functional dimension: nurse, nursing assistant,
ed nursing assistants, and home health aides. Communicat-
therapists, and volunteers
ing care plan goals and interventions and monitoring and
Interpersonal dimension: counselors, social worker,
evaluating the care provided by these other IDT members are
psychologist, and volunteers
the responsibilities of the hospice registered nurse.
Well-being dimension: counselors, social worker,
Advanced registered nurse practitioners are most often used
psychologist, chaplain, and volunteers
as collaborative primary care practitioners, providing palliative
Transcendent dimension: chaplain, counselors, social
care consultation and care management for the expanded hos-
worker, psychologist, and volunteers
pice palliative care programs (e.g., pain consultation in hospital
Interdimensional care provided by an IDT focuses on the and long-term care settings). Advanced registered nurse practi-
experience of those served and the core disciplines that can tioners and clinical nurse specialists are also involved as consul-
best support that experience. By changing from a singular tants to the primary hospice team.
discipline to an interdimensional approach, all disciplines
attend to all dimensions of the patients and familys experi- Psychosocial Professionals. Psychosocial professionals may
ence.31 include social workers and counselors who are competent in
Whereas each discipline of the IDT involves special areas of psychosocial assessment, family dynamics, social/emotional
expertise, responsibilities, and duties, the IDT approach to therapeutic interventions, grief and bereavement, and group
care management requires that each team member expand work. They provide support to patients and families, assisting
and blend the traditional roles with those of other disciplines with psychological issues, emotional responses, and the over-
to provide a holistic approach to patient and family care. all adaptation of the patient, family, and signicant others
One must be an expert in her or his own discipline and through counseling and utilization of community resources.
have the basic competence to provide physical, psychosocial, They may also be involved with financial issues, legal issues,
spiritual, and bereavement care. Assessment, planning, inter- advance directives, and funeral arrangements. Overall, the
vention, and evaluation are ongoing responsibilities of all psychosocial professional helps the patient and family as
team members, implying that each is attentive to all dimen- they adapt to and cope with a terminal illness and the sur-
sions of patient and family care. Role blending is essential for vivors as they adjust to life during the bereavement process.
providing coordinated, comprehensive hospice services. As It is also crucial for nurses to possess expertise in end-of-life
such, roles need to be dynamic, changing, growing, and over- psychosocial issues because they, too, will be involved in
lapping. addressing and supporting the patients and familys psy-
chosocial needs as members of the IDT. Both the psychoso-
Direct Responsibilities of Patient/Family cial and the spiritual care team members are experts in
Care Team Members addressing many of the aspects of care relating to life and
relationship closure.
Nurses, Including Advanced Registered Nurse Practitioners
and Registered Nurses. In the MHB model, the registered Spiritual Care Professionals. Spiritual care is a signicant
nurse is primarily responsible for physical care, including the component in end-of-life care. The spiritual caregiver, also
patients physical condition and comfort, yet must also pos- known as the chaplain, clergy person, or pastoral care worker,
sess some level of expertise in psychosocial and spiritual can be a paid hospice professional or a resource volunteer
aspects of care, to address the patient and family from a from the community. Hospice spiritual care is nonsectarian,
holistic perspective. She or he must be highly skilled in end- nondenominational, and all-inclusive, with the goal of sup-
stage physical assessment, disease progression, and pain porting the patients and familys spiritual and/or religious
and symptom management. The nurse is also responsible practices. The hospice philosophy in terms of spiritual care is
for educating the patient and family regarding physical nonjudgmental and focuses on healing, forgiveness, and ac-
care, which includes such things as medication administra- ceptance. Spiritual care is provided through direct spiritual
tion, equipment use, skin care, nutrition, catheter care, and counseling and support by collaboration with the patients
transfers. and familys own clergy or by working with patients who do
For those hospice programs that are MHB certied, regula- not have a clergy person but request spiritual care. Spiritual
tions require the coordination of care by a registered nurse interventions can include prayer, rites, rituals, assistance in
and primary physician. As a member of the IDT, the nurses planning and performing funerals and memorial services, and
expertise related to disease and symptom management is one assistance with ethical dilemmas. Again, the nurse must have
some level of expertise in the spiritual aspects of care to Roles and Responsibilities of
address the patients and familys spiritual needs. Consultative Team Members
Patients Primary Physician. The patients primary physician Consultative team members participate in direct patient care
is also part of the IDT. The primary physician is responsible as needed to meet the palliative care goals of the care plan.
for overseeing patient care. The physician often refers the Consultative team members may include the hospice team med-
patient to hospice; certies the patients terminal condition; ical director; consulting physician; psychologist or psychiatrist;
and collaborates throughout the care process, providing the nutritional counselor; community clergy; clinical pharmacist;
admitting diagnosis and prognosis, current medical ndings, occupational, physical, respiratory, speech, and language thera-
dietary orders, and orders for medications, treatments, and pists; intravenous infusion nurse; and members of pharmacy,
symptom management. radiology, laboratory, and durable medical equipment services.31
Hospice Medical Director. The hospice medical director is a

member of the IDT. She or he is responsible for the overall
o]
medical management of all patients. Depending on the struc-
ture of the hospice program, the medical director may also
Coping with Cumulative Loss:
become a patients primary physician. The role of the hospice
The Nurse as Caregiver
medical director is to participate in the team care planning
The hospice philosophy of care, which emphasizes intense inter-
process as a collaborative member of the IDT. The director
personal care and active involvement with the patient and family,
may also be responsible for the oversight of medical services
creates more intense and more intimate relationships among the
provided by the hospice.
nurse, patient, and family than exist in traditional health care set-
tings. Like families who grieve the loss of their loved ones, the
Certied Nursing Assistant or Home Health Aide. Certied
hospice nurse also grieves the loss and, in fact, may need to grieve
nursing assistants provide basic physical and functional care if
on a continuous basis due to the number of deaths that occur. As
there is a need, as well as patient and family support. They pro-
the hospice nurse adjusts to caring for dying patients and their
vide and educate caregivers on personal care assistance with
families, the stress of coping with death on a daily basis can trig-
ADLs, which may include bathing, grooming, mouth care,
ger many emotional feelings, reactions, and behaviors.
skin care, transfers, and repositioning, and sometimes with
Other factors may also inuence a nurses successful adap-
light housekeeping, shopping, cooking, and laundry. Visits
tation to caring for dying patients and their families. If the
vary depending on patient and family needs and what is most
nurse has experienced death on a personal level or has experi-
important to the patient at each visit. At times, a walk in the
enced life changes that signify loss (e.g., children leaving home,
garden is more therapeutic than a bath.
divorce), caring for dying patients and families may trigger
issues of unresolved grief. The nurses ability to verbalize his or
Homemaker/Companion. The homemaker/companion assists
her feelings regarding death and loss with other members of
the patient and family by doing light housekeeping, meal plan-
the IDT is important for support and for normalizing these
ning and preparation, laundry, and shopping and by acting as a
feelings.
companion to the patient. The homemaker/companion does not
Hospice nurses who are unable to process these losses
provide direct, hands-on care. For elderly patients living alone, it
through appropriate grief and personal death awareness may
is often the addition of a homemaker/companion that allows
begin to distance themselves from emotional involvement with
them to remain independent in their homes until they die.
patients and families. This withdrawal may negatively affect
not only the coping ability of the professional but also the qual-
Patient Care Volunteer. Volunteers play an integral role in pro-
ity of compassionate delivery of care and the ability to meet the
viding hospice care and are fundamental to the hospice phi-
needs of dying patients and their families during the terminal
losophy. Hospice patient care volunteers are trained to work in
phases of an illness.
a variety of roles. The most common role is working with a
single patient and family in providing support through com-
panionship, listening, diversion, delivering medications, run- Stages of Adaptation for the Hospice Nurse
ning errands, taking patients to appointments or on outings,
shopping, or preparing a special meal. They may provide com- Hospice nurses go through many stages when they begin car-
panionship to patients in extended care facilities or respite ing for dying patients and their families. Successful progres-
time for the home patients caregiver. Specialized volunteer sion through these stages and the support systems in place to
roles may include bereavement volunteers, who work exclu- facilitate successful progression are vitally important in deter-
sively with grieving families and friends, or those who sit at the mining whether the nurse will be comfortable and effective in
bedside during the dying process. The scope of volunteers caring for the dying.
duties is all-inclusive, depending on the needs of the patient As proposed by Bernice Harper,32 an expert in anxiety issues
and family and their quality-of-life goals. in the professional caregiver, there are six stages of adaptation
their own feelings about death, accept their own mortality, and
accept death as a natural part of life.
It is in this stage that hospice professionals positively move
toward resolution of death and loss and accept the reality of
death and dying, or negatively resolve death and loss by choos-
ing to avoid the emotional pain. In positive resolution, hospice
professionals emotionally arrive at a comfortable place in car-
ing for dying patients and their families.
Emotional Arrival. Emotional arrival occurs within 9 to

12 months of caring for the dying. With positive resolution of the
last stage, hospice professionals become sensitive to the emo-
tional needs and issues associated with dying and death. They
can now cope with and accept loss, participate in healthy griev-
ing, experience and conceptually work within the principles of
hospice philosophy by advocating for the patient and family, and
t-ability" become involved with patients and families on a deeper level.
f "Comfor
Line o
Deep Compassion. Deep compassion occurs after the rst year
Figure 21. Cumulative loss and the caregiver: Five stages experi- as a hospice nurse. In this stage, hospice professionals begin to
enced by the hospice nurse while caring for the dying. (Source: rene their knowledge and skills and are comfortable in pro-
Harper [1994], reference 32.) viding compassionate, physical, psychosocial, and spiritual care
to dying patients and their families. This stage is characterized
by personal and professional growth and development.
that characterize the hospice nurses normal progression, adap-
tation, and coping in caring for the dying: intellectualization, The Doer. The nal stage, the doer, is the culmination of nurses
emotional survival, depression, emotional arrival, deep com- experiencing the rst ve stages in a healthy and balanced man-
passion, and The Doer. Five of these stages and the emotions, ner; this outcome is characterized by hospice professionals who
behaviors, and reactions of each stage are shown in Figure 21 are efcient, vigorous, knowledgeable, and able to understand
and Table 27. and comprehend humankind. Death has an inner meaning
embedded in caring. Doers have grown and developed person-
Intellectualization. Intellectualization usually occurs during ally and professionally through the experiences of caring for the
the rst 1 to 3 months of caring for the dying. During this time, terminally ill.
professional caregivers are usually confronted with their rst
experience of a hospice death. Nurses in this initial stage spend Support Systems
much of their energy learning the facts, tasks, policies, and pro-
cedures of the job. Emotional involvement in the dying and In caring for dying patients and their families, the hospice nurse
death of the patient may be inadvertently avoided, and the hos- is vulnerable to emotions, reactions, and behaviors that can ulti-
pice nurse seldom reacts on an emotional level to the death. mately affect his or her personal well-being and the delivery of
quality palliative care. To effectively care for patients and fami-
Emotional Survival. Emotional survival generally occurs within lies, the nurse must also be responsible for attending to her or
3 to 6 months of employment. Emotional involvement and a his own emotional, physical, and spiritual needs. Successfully
deeper connection with the patient and family occur. The nurse coping with and adapting to dying, death, and cumulative loss is
begins to confront the reality of the patients death, to face her possible only if a system is in place that provides support to the
or his own mortality, and to feel sadness about the patients sit- nurse. Support systems may include personal death awareness
uation and/or the loss of the patient. Often during this stage, exercises, time to verbalize in one-on-one counseling or with
the nurses begin to fully understand the magnitude of their the IDT or both, supervisor support, preceptors or mentors,
roles and responsibilities and to question their abilities and spiritual support, funeral or memorial services for closure,
desire to continue caring for dying patients and their families. joint visits with members of other disciplines, and educational
This is a crucial time, and the nurse needs to be reassured and opportunities. The nurse should also explore individually facil-
given support and resources to feel competent and condent so itated support systems through journal writing, exercise, relax-
that he or she can progress successfully in the eld. ation, meditation, and socialization with family and friends. By
exploring and accessing support systems, hospice nurses can
Depression. Depression occurring at 6 to 9 months is often a nd satisfaction, fulllment, and growth and development in
time when hospice nurses process the losses rather than avoid their personal and professional lives as they provide compas-
them or remain emotionally detached. They begin to explore sionate end-of-life care to patients and their families.
Table 27
Cumulative Loss and the Professional Caregiver
Stage I Stage II Stage III Stage IV Stage V

(03 mo) (36 mo) (69 mo) (912 mo) (1224 mo)
Intellectualization Emotional Survival Depression Emotional Arrival Deep Compassion
Professional Increasing Deepening Acceptance of Rening professional

knowledge professional professional professional knowledge
knowledge knowledge knowledge
Intellectualization Less Decreasing Normal Rening intellectual base
intellectualization intellectualization intellectualization
Anxiety Emotional survival Depression Emotional arrival Deep compassion
Some Increasing Decreasing Increasing Increased
uncomfortableness uncomfortableness uncomfortableness comfortableness comfortableness
Agreeableness Guilt Pain Moderation Self-realization
Withdrawal Frustration Mourning Mitigation Self-awareness
Supercial Sadness Grieving Accommodation Self-actualization
acceptance
Providing tangible Initial emotional More emotional Ego mastery Professional satisfaction
services involvement involvement
Use of emotional energy Increasing Overidentication Coping with loss of Acceptance of death
in understanding emotional with the patient relationship and loss
the setting involvement
Familiarizing self Initial Exploration of own Freedom from concern Rewarding professional
with policies and understanding of feelings about death about own death growth and development
procedures the magnitude of
the area of practice
Working with Overidentication Facing own death Developing strong Development of ability to
families rather than with the patients ties with dying give of ones self
patients situation patients and families
Coming to grips Development of Human and professional
with feelings about ability to work with, on assessment
death behalf of, and for the
dying patient
Development of Constructive and
professional appropriate activities
competence
Productivity and Development of feelings
accomplishments of dignity and self-respect
Healthy interaction Ability to give dignity and
self-respect to dying
patient
Feeling of comfortableness
in relation to self, patient,
family, and the job
Source: Harper (1994), reference 32.
o] recognition that there are barriers to its full utilization. Often

Access Barriers to Hospice Care patients are referred for hospice care just a few days or even
hours before their deaths. Hospice demonstration projects
In the national dialogue about improving care at the end of life, are now underway testing how to care for patients who have
access to hospice services has been raised as a public policy and an extended life expectancy or are receiving experimental
public health concern. There is acknowledgment of the value of or disease-modifying treatments. Policy proposals have been
hospice care for patients who need palliative care, with the offered to allow for hospice programs to receive reimbursement
for providing palliative care consultations to recently diagnosed of palliative care but few documented, valid, and reliable
patients and how to dene alternative eligibility criteria that prognostic indicators of when palliative care should begin,
could be substituted for the 6-month prognosis requirement.33 especially for patients with diagnoses of chronic noncancer
Many factors contribute to late referrals and access barriers, and disease or aging and multisystem failure. This ambiguity
communities are collaborating to ensure that palliative care is can cause delay in referral to hospice or toward any palliative
available across settings throughout the disease trajectory.12 care focus. Further development and research on practice
protocols for the care of patients with terminal disease is
needed.
A Death-Defying Society
Terminally ill persons, given physician-certied prognosis
The prevailing attitude of society toward death continues to be of 6 months or less to live, represent patients who are poten-
death-defying. Unquestionable acceptance of innovation, ef- tially eligible for the MHB model. From historical,36 contem-
ciency, science, technological advances, and the ability to prolong porary,37 and scientic perspectives,38 however, determination
life reects the current perspective on health care. Therefore, ac- of terminal status is notoriously elusive.
ceptance of death as a natural process is difcult and offensive. In an effort to implement criteria to identify when hospice
Even with the growing hospice movement, most deaths happen should begin, the Centers for Medicare and Medicaid (for-
in hospitals, often with uncontrolled pain.34 As experts in the care merly the Health Care Financing Administration) imple-
of patients and families at the end of life, hospice workers will mented Medicare prognostic criteria called Local Medical
continue to shape the way in which people view dying and death. Review Policies (LMRPs) through the national Fiscal Inter-
mediaries in the mid-1990s. The appropriateness of the
Medicare prognostic criteria (LMRPs) has been contested on
Access Barriers several points. First, mounting quantitative evidence shows
little association between the LMRPs and short-term sur-
As a result of dissatisfaction with care afforded the dying more
vival outcomes in hospice.39,40 Second, although Medicare
than 25 years ago, community members introduced the vision
hospice was founded on the value of holistic, physical, psy-
of hospice care. Congress adopted this vision through the cre-
chosocial, and spiritual treatment of dying individuals, the
ation of the MHB in 1982. Millions of Americans have bene-
LMRP criteria exclude nonphysical markers of disease pro-
ted from care under this act, but it has fallen short of meeting
gression. Third, although the consequences of regulatory
current needs of the dying.
reform have yet to be fully understood, the LMRPs appear to
At the request of the NHPCO, the Committee on the
disadvantage those who are less obviously and imminently
Medicare Hospice Benet and End-of-Life Care spent almost a
terminally ill. Sets of criteria to reliably distinguish termi-
year addressing issues related to hospice and end-of-life care.
nally individuals (i.e., those with 6 months or less of life
As part of the committees review and recommendations, bar-
expectancy) from persons with severe and progressive dis-
riers to achieving the characteristics of the ideal future hospice
ease would serve important clinical, practical, and humani-
and extending hospice to more Americans were identied. The
tarian goals in hospice and in many other health care
specic recommendations of the report were wide-ranging,
settings.34 However, the LMRP criteria appear to have limited
from improving the MHB to changing the education of health
scientific merit.41
and human service professionals to raising the expectations for
As is apparent from the ndings of the largest project testing
performance by hospice programs. All are important, but the
the validity of the LMRPs as prognostic criteria, application of
following steps were identied as having the highest priority:
the LMRP criteria can yield considerable misclassication.
Eliminating the 6-month prognosis under the MHB Moore observed a consistent pattern of relatively low rates of
and identifying alternative eligibility specications; false-positive error and much higher corresponding rates
Collecting and analyzing comprehensive data on the of false-negative error. The practical consequence of high false-
cost of meeting patient and family needs through negative errors is erroneous classication of individuals who
hospice, with the intent to address inadequacies in would survive less than 6 months as ineligible for the MHB.
Medicare payments; The consequence of false-positive errors is erroneous classica-
Developing outcome measures for assessing the tion of individuals who will survive longer than 6 months as
quality of end-of-life care; MHB-eligible. Relative to the costs and benets of regulatory
Engaging the public in a campaign to create wider innovation, false-negative errors most disadvantage patients,
understanding and utilization of hospice care.35 families, and providers, whereas false-positive errors most dis-
advantage payers of public services.41 These results further sup-
Prognostic Limitations port those of previous smaller studies, which also indicated
that prognostication is not a clear and concise science. The
One of the significant factors limiting access to hospice care MHB was initially implemented with the understanding that
is the determination of when hospice care should begin. the IDT in collaborative assessment would be the ideal way to
There is mounting clinical evidence of the appropriateness identify when someone is eligible for the MHB.
o] subsidiaries, integrating those initiatives with traditional

Eliminating Barriers and Improving Access hospice care.32
The Comprehensive Hospice Center model, described ear-
Hospice programs have begun to respond to these barriers lier, aligns care and services with the needs of an aging popula-
and are now providing a broader range of services by using tion; these centers are compatible with a public health paradigm
more liberal internal eligibility criteria, flexible state hos- reecting the preventive and care needs of youth, middle-aged,
pice licensing provisions, home health agency licensure, no- and older personsa birth-to-death public health paradigm
fee volunteer support programs, counseling centers, and (Figure 22). Comprehensive hospices provide primary preven-
other approaches. Many hospice programs have extended tion services to the community by offering education on termi-
their services to incorporate new palliative treatments, elim- nal disease trajectories and end-of-life care and caregiving and
inated access barriers by admitting patients who live alone or by providing bereavement support to communities. Through
lack a family caregiver or stable home setting, and cared for such activities, these hospices have the potential to contribute to
more patients with diagnoses other than cancer, including the occurrence of lower survivor morbidity and mortalityto
children with life-threatening illnesses. Other hospice agen- contribute to the publics health.12
cies have pursued a somewhat different path to the same Comprehensive hospices provide educational programs
goal of expanded access by labeling their broader service and services in schools and universities, in workplaces, and in
offerings as palliative care. Some have changed their other public places within communities (e.g., churches); they
services and their names to include palliative care compo- sponsor culturally diverse initiatives and help in the creation
nents through discrete programs or separately incorporated and dissemination of new knowledge.
Figure 22. Elements of a birth-to-death public health paradigm: an public health agenda for an aging society. In: Hickey T, Speers MA,
extension of an integrated public health and aging model by Andersen Prohaska TR, eds. Public Health and Aging. Baltimore: Johns Hopkins
and Pourat. (Sources: Andersen R, Pourat N. Toward a synthesis of a University Press, 1997, pp 311324; Miller and Lima [2004], reference 11.)
Elements of the Public Health Elements of the End-of-Life/ Elements of the Aging Paradigm
Paradigm Life-Limiting Illness Paradigm Older people
Youth Youth, middle aged and older people Secondary and tertiary prevention
Infectious disease Management of acute and chronic Chronic disease
Primary prevention symptoms Patient oriented
Community orientation Emotional and spiritual support Direct personal services
Population-based intervention Interdisciplinary care and services
Coordinated care and services
Patient/family oriented
Direct personal services and support
Beyond the provision of patient/

family oriented care and services,
Elements of a Birth-to-Death Public Health
comprehensive hospice centers
Paradigm
contribute to the publics
Youth, middle aged and older people health through:
Infectious and chronic disease Community/workplace/school/
Primary prevention across the lifespan university-based educational
Secondary and tertiary prevention programs and initiatives
Community orientation Bereavement programs for
Population-based orientation community
Faith-based and culturally
diverse initiatives
Research/academic endeavors
Community advocacy
Other
o] o]
HospiceHospital Collaborations The Funding of Hospice Programs
A growing number of people in acute care settings are The original hospices, which began as grassroots community
recognized as being in need of palliative care. It is now rec- efforts, were funded almost exclusively by charitable support,
ognized that palliative care should not be an alternative to grants, and volunteer efforts. Some components of care were
curative or life-prolonging treatment but should be offered supported by Medicare or insurance, such as skilled nursing vis-
in conjunction with such medical treatment. It is also recog- its, medications, or durable medical equipment on a per-unit
nized that this type of care is increasingly important as fee-for-service basis allowed under an acute care model. In 1980,
the health care system faces the need to find ways to treat the U.S. Congress authorized a 2-year demonstration program in
the growing number of older adults with complex chronic 27 hospices around the nation to study the outcomes of hospice
illness.33 care and the costs associated with it. The demonstrations
One approach to meeting the expanding needs of patients included researchers at each site who collected both eld data
and families is evident in the growing number of partnerships from patients and families and cost data from each organization.
between hospital systems and hospice programs. A study Ultimately, the demonstration was continued for an additional
conducted by the NHPCO and the Center to Improve Pallia- year. Based on very preliminary ndings, Congress created the
tive Care identied various structures currently in place to MHB as a 2-year endeavor and then subsequently approved it as
meet the palliative care needs of patients in acute care. Their a permanent part of the Medicare program in August of 1982.
report, HospiceHospital Collaborations: Providing Palliative The MHB was a landmark event under Medicare in that it
Care Across the Continuum of Services, offers glimpses of how was the rst formal recognition of the unique needs of dying
some models of collaboration are contributing to the expan- patients and their families. It was also the rst form of what
sion of palliative care in the hospital setting. Hospital ultimately became managed care. It included provisions never
hospice collaboration is generally proceeding on two tracks. before included as health care benets, such as spiritual sup-
The rst overall direction lies in enhanced use of the MHB port, volunteers, and bereavement support for family mem-
for appropriate patients by promoting closer relationships bers. It was an all-inclusive benet in which all services related
between hospice programs and hospitals, offering education, to the terminal illness were to be provided, coordinated, and
developing specialized units, and encouraging the direct paid for through the hospice program. Although this approach
admission of hospitalized patients to hospice. The second is now frequently viewed as a strategy to control costs, it was at
track involves development of new, nonhospice benet ser- the time designed in this manner because surviving family
vices, such as hospice palliative care management and consul- members cited the complexity of bills and the nancial toll of a
tation services.33 terminal illness as one of the greatest stressors.
The benet included the following core hospice services:
When Nurses Should Consider nursing care, medical and social services, physician services,
Hospice for Their Patients counseling/pastoral services, short-term inpatient and respite
care, medical appliances and supplies including drugs and bio-
All nurses must be familiar with the benets and services of logicals, home health aide and homemaker services, therapies
their local hospice programs, so that they can effectively edu- (physical, occupational, speech), bereavement counseling, and
cate and advocate for palliative care when their patients and drugs for symptom management and pain control.15 It also
families could benet from this approach and scope of sup- had a provision for four levels of care depending on the intensity
portive services. Considering the expanding hospice models, and place of care rendered on any given day. Continuity across
there are many myths and misperceptions that must be all care settings with hospice professional management of care
eliminatedsuch as the need to be within 6 months of death was and continues to be a strong underpinning of the benet.
to receive hospice servicesso that patients and families can Following the MHB demonstration and benet develop-
be optimally supported. The most common comment nation- ment, Medicaid and private insurance hospice benets began
ally on hospice family satisfaction surveys is, I wish we had to emerge. Ultimately, most states developed Medicaid bene-
hospice sooner. The voices of these families support the need ts, which are mandated to be no less than the Medicare ben-
for earlier referral to hospice. It is important for nurses et. Private insurers frequently model their benet on the
providing end-of-life care to consider when to think about MHB, although they are under no mandate to do so.
hospice. Table 28 lists practical scenarios to guide nurses Most hospices are committed to providing care regardless
in offering hospice as a supportive service to patients and of ability to pay, and they continue to be dependent on
families throughout the lifespan. Hospice teams are expert at charitable dollars to provide such care. Additional supportive
assessing palliative care needs and are available to assist services, beyond the benet, such as childrens programs, in-
nurses in determining which services may benet a given home caregiver programs, hospice residences, and community
patient. A call to collaborate with the local hospice provider bereavement and education programs, are provided in many
can initiate this assessment. hospice communities.
Table 28
When to Call Hospice
Call for a Consultation When How Hospice May Help
Your patients and Hospice can provide support for the patient and
family members are family to help lessen their anxieties, normalize
calling more and more to ask their feelings, connect them to community
questions about care caregiver resources, and teach caregiving skills.
You would not be surprised The number one comment made by hospice
by this patients death within families after the death of a loved one is, I wish
the next year we had hospice services earlier. We needed the
help. Hospice can outline ways to support
your patient and family earlier.
You see a Hospice admissions staff and medical
sudden decline in directors are experts at assessing for
the patients needed care and services. If the patient
condition is not eligible for the Medicare Hospice
Benet, the patient and family may be
offered other services, such as palliative
care or counseling.
There is progressive Loss of function is a key prognostic indicator
loss of function for a life-limiting condition. Hospice can
provide durable medical equipment, personal
care, and other assistance.
Your patient Two hospitalizations for the same chronic
has been disease within 12 months is often an indicator
hospitalized twice of less than 1 year to live. Hospice inter-
in the past year due disciplinary teams can assess the progression
to symptom of the disease and help determine
exacerbation from a whether it a good time for hospice support.
chronic illness
There is an Especially for the elder population, a
onset of multiple rapid change in condition or progressive
comorbidities decline of functional abilities indicate
and/or an increase it may be time for hospice. Call for an assessment
in symptoms and identication of support services.
associated with
comorbidities
Your patient Hospice staff are experienced in
would benet from clarifying the various options for advance
help with advance directives. They can assist patients and
directive/care family members in having
planning discussions to clarify end-of-life goals and make
informed choices.
Your patient Through an array of programs,
could benet from hospice may be able to provide palliative
palliative symptom care coordination to patients along the
management while care continuum. Physicians, nurse
still pursuing practitioners, and the hospice
curative therapy interdisciplinary team can help control
side effects and other symptoms.
(continued )
43
Table 28
When to Call Hospice (continued )
Call for a Consultation When How Hospice May Help

A patient is making decisions Hospice counselors and peer volunteers
about transitioning to palliative care can help your patients/families address
options and fears and advocate for their
wishes. Hospice staff assist patients
and families in identifying and dening
quality of life, so that decisions can be
made with peace of mind.
Someone needs information about Hospice has an extensive resource center
any end-of-life or related health with a broad range of topics including end of life,
care issues wellness, complementary therapies, and advance
directives.
Your patient is Hospice can provide family support in

in the intensive care unit and decision-making, resources on alternative
is considering comfort placement options if the patient cannot be
measures only cared for at home, and the option for hospice
residence placement.
The family or other caregivers are Hospice can help patients and families to
unable to care for the patient determine caregiving resources available
at home through personal support systems,
community groups/agencies and hospice.
The hospice residence expands the
available options.
At the time of diagnosis of a Someone to talk to may be the best
life-limiting illness support you can offer. Hospice
reassurance volunteers are trained to help
in these difcult situations.
It is time to have a Hospice counselors can be present during
difcult discussion these conversations or can meet with families
afterward and provide resources to patients
and families to guide conversations.
Copyright January 2004, The Hospice of the Florida Suncoast, Largo, Fla.
Although a small portion of all people receiving health The Medicare Hospice Benet
care are at the end of life and receiving terminal care, the
terminally ill consume a disproportionate percentage of all The levels of care outlined in the MHB reect the variations in
health care expenditures. There are several studies on the care intensity that are required to meet patient and family
cost savings in hospice versus traditional health care at the needs in the last phase of life. Medicare provides coverage for
end of life. Hospice has remained a positive example of inte- hospice care to Medicare beneciaries who have elected the
grating a managed care model with proven cost savings while hospice benet and who have been certied as terminally ill
meeting patients and families needs and receiving high with a prognosis for a life expectancy of 6 months or less. Once
quality scores. elected, Medicare pays one of four prospective, per diem rates
Initially, hospices were slow to seek certication for Medi- for hospice care: routine home care, continuous home care,
care status, but this connection has grown steadily as hospices respite care, general inpatient care. Each of these payment cat-
have become more comfortable with assuming the risk of total egories is dened later. Changing the level of care is deter-
costs of care. There were also nancial reimbursement and mined through a collaborative effort by the hospice IDT,
other utilization caps in the program that concerned many. patient, family, and primary physician.
Today, most hospices are Medicare certied, and the number
of recipients of hospice care in America has grown commen- Routine Home Care. Routine home care is provided in the
surately, from approximately 500,000 patients and families in patients home, nursing home, or residential care setting or
1998 to more than 885,000 in 2002.10 wherever the patient and family reside. The hospice core
services provided at this level include nursing care, home and purpose in ones suffering, the value of ones life accom-
health aide care, social services, therapies, medical appliances plishments, the deepening of relationships, and the personal
and supplies, and drugs. spiritual signicance of the experience.
Nurses can positively affect this experience for others by
Continuous Care. Continuous care covers patients in brief allowing the patients and familys personal values and goals
periods of crisis, during which 8 or more hours per day of care to direct the support and care they offer as they are invited to
is provided to the patient at home, with at least 50% of the care share in this intimate time of life. Regardless of the site of
being delivered by a registered nurse or licensed practical care or type of program or services, nurses providing end-of-
nurse. life care must be proficient in end-stage disease and symp-
tom management. They also have a responsibility to be
Inpatient Respite Care. Inpatient respite care covers patients knowledgeable about the services a hospice program can
in an approved inpatient facility for the relief of the patients offer their patients and families and to know when to con-
primary caregiver, for a maximum of 5 days per episode. It sider offering hospice care. Nurses must be guided by dig-
includes coverage of drugs, supplies, and equipment as well. nity, compassion, love, and individual acceptance of patient
and family values and choices to ensure quality end-of-life
General Inpatient Care. General inpatient care covers patients care.
in a participating hospice inpatient unit of a hospital, skilled
nursing facility, intermediate care facility, or free-standing
hospice for medically necessary days for the control of pain or references
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Chicago, 2003. Lifes End: The National Train-the-Trainer Curriculum. Module
30. Sherman DW. Training advanced practice palliative care nurses. 3: Life Affairs. Key Largo, Fla.: The Hospice Institute of the
J Am Soc Aging 1999;23:88. Florida Suncoast, 2003:M3HO1M3HO2.
3o] Elaine Glass, Douglas Cluxton, and Patrice Rancour
Principles of Patient and Family Assessment

The question is not what you look at, but what you see.Henry David Thoreau
Key Points An effective assessment is key to establishing an appropriate

Comprehensive assessment of the patient and family is essential to nursing care plan for the patient and family. The initial pallia-
planning palliative care. tive care nursing assessment varies little from a standard nurs-
Assessment involves input from the interdisciplinary team with ing assessment.1 In order to assess effectively, members of the
information shared verbally as well as in the patient record. health care team need to maximize their listening skills and
Detailed and comprehensive assessment is needed to identify the minimize quick judgments. Medical experts contend that dur-
complex and changing needs of patients and families facing ing a medical assessment interview, in which a physician
advanced disease. mostly listens and gently guides the patients story, the physi-
cian can accurately diagnose the patients problem 70% to 80%
of the time.2
The goals of the palliative care plan that evolve from the ini-
tial and ongoing nursing assessments focus on enhancing qual-
ity of life. Ferrells quality-of-life framework3 is used to organize
the assessment. The four quality-of-life domains in this frame-
work are physical, psychological, social, and spiritual well-being.
For the purpose of this chapter, the psychological and social
domains are combined into one, the psychosocial domain.
Because the needs of patients and families change through-
out the course of a chronic illness, these quality-of-life assess-
ments are examined at four times during the illness trajectory:
at the time of diagnosis, during treatments, after treatments
(long-term survival or terminal phase), and during active
dying.
9=
case study
Ghedi, a Man with Colon Cancer
Ghedi, a ctitious patient from Somalia, serves as a case exam-
ple throughout his illness experience with colon cancer. He is a
68-year-old man who emigrated to the United States in 1998.
He lives with his older brother, Asad; his sister-in-law, Laila;
and their adult son and daughter. Asad and his family have
lived in the United States for 15 years; they have developed ease
with English and are sensitive to many American customs and
norms. Ghedi came to this country after losing his wife and
son in the war in his native land in 1991. He has continued to
47
speak Somali exclusively, retaining his afliation with his native Introducing himself or herself to the patient and
land, and has avoided assimilation into American culture. He others in the room.
understands some spoken English. Ghedi and Asad have no Verifying that this is the correct patient.
other family members in the United States, but they are well Determining how the patient would like to be
integrated within the Somali community that is located in addressed: rst name? last name? a nickname?
their city. Ghedi is a devout Sunni Muslim who believes that Explaining the purpose of the interaction and the
God will protect him, that good health is a gift from God, and approximate length of time that he or she intends to
that illness can be a result of the presence of spirits in ones life. spend with the patient.
o] Asking the patients permission to proceed with the
assessment, giving the patient an opportunity to use
the restroom, and excusing others whom the patient
o] does not wish to be present during the interview
Malignant versus Nonmalignant Terminal Diseases and examination. (Some patients may want signi-
cant others to be present during the interview, to
Because the authors of this chapter work primarily with assist with recall, but not during the examination.
oncology patients, much of the assessment content is based on The nurse needs to modify the assessment routine
the cancer experience. The experiences of terminally ill patients to accommodate the patients preferences.)
with diseases other than cancer can be equally dynamic in Taking a seat near the patient, being respectful of
terms of the continuous or episodic declines they face through- the patients cultural norms for physical closeness
out the illness trajectory. and eye contact.
A primary difference between patients with malignant Inviting the patient to tell about how he or she
and nonmalignant illness lies in the current acceptance by the learned of the illness.
medical establishment that efforts toward cure are unavail- Taking care not to interrupt the patient too often;
able for many nonmalignant diseases. Thus, from the start, using communication techniques such as probing,
the focus of medical care for these patients is palliative rather reecting, clarifying, responding empathetically, and
than curative: reduction of symptoms, improvement of qual- asking open-ended questions to encourage greater
ity of life, and optimization of the highest level of wellness. detail if the patients account is brief or sketchy.
Examples of these kinds of illness today include acquired
immune deficiency syndrome (AIDS); refractory cardio- Refer to Figure 31 for a sample physical symptom assess-
vascular, hepatic, and renal diseases; brittle diabetes; and ment charting form that includes a severity measurement
neurological disorders such as multiple sclerosis, cerebral scale.
palsy, amyotrophic lateral sclerosis, Parkinsons disease, and
Alzheimers disease. For some of these diseases, the focus of
medical care may include attempting to extend life through o]
research with the hope of finding a cure. Introduction to Psychosocial Assessment
In contrast, medical professionals and the public are con-
tinually looking and hoping for a cure for cancer. As a result, Tables 31 through 33 provide a framework for three key ele-
the oncology patient may repeatedly alter his or her expecta- ments of assessment: conducting a psychosocial assessment,
tions about the future. Words describing the status of the dis- distinguishing normal grief from depression, and doing a gen-
ease during a cancer illness include no evidence of disease, eral mental status assessment. Throughout the illness trajec-
remission, partial remission, stable disease, recurrence, tory, the nurse can use these tools to monitor the patients
relapse, and metastasis. Patients report experiencing a response to illness and treatment.
roller-coaster ride, in which the hopeful points in remission Anyone diagnosed with a serious or life-threatening illness
are often followed by a crisis with relapse or disease progres- experiences many losses. However, responses to illness vary
sion. Patients may be told, more than once, that they are likely tremendously among individuals. In addition, the same per-
to die within a short time. Then, they may recover and do well son may respond differently at various times during an illness.
for awhile. As a result, the reality of death may be more dif- How a particular patient copes depends on the severity of the
cult when it does occur. illness, the patients history of coping with stressful life events,
and available supports. Some individuals develop coping styles
that are more helpful than others when facing a life-threatening
o] illness.
Introduction to Physical Assessment The nurse needs to assess two very important parameters in
order to assist the patient in coping in the most functional way
Before beginning the assessment interview and physical exam- possible. These parameters are the patients need for informa-
ination, it is important for the nurse to establish a relationship tion and her or his need for control in making decisions.
with the patient by doing the following: Observers of exceptional patients, such as Bernie Siegel,4 have
Figure 31. Sample physical assessment charting form. (Source: Grant Medical Center,
Columbus, Ohio. Reprinted with permission; all rights reserved.)
(continued )
Figure 31. (continued )

Principles of Patient and Family Assessment 51
Table 31
Framework for Psychosocial Assessment
Determining the types of losses
Physical Psychosocial Spiritual

Energy Autonomy Illusion of predictability/certainty
Mobility Sense of mastery Illusion of immortality
Body parts Body image alterations Illusion of control
Body function Sexuality Hope for the future
Freedom from pain and Relationship changes Time
other forms of Lifestyle
physical dysfunction
Work changes
Sexuality
Role function
Money
Time
Observing emotional responses

Anxiety, anger, denial, withdrawal, shock, sadness, bargaining, depression
Identifying coping styles

Functional: normal grief work and problem-solving
Dysfunctional: aggression, fantasy, minimization, addictive behaviors, guilt, psychosis
Assessing the need for information

Wants to know details
Wants the overall picture
Wants minimal information
Wants no information, but wants the family to know
Assessing the need for control

Very high
High
Moderate/average
Low
Absent, wants others to decide
noted that patients who are proactive, assertive information- recurrent as losses accumulate. This does not make it patho-
seekers often appear to have better outcomes than patients logical, but it does form the basis of the roller-coaster phe-
who are passive in making decisions. Indicators of a persons nomenon that many patients describe. Some patients with
need for control may include the following: advanced disease have been able to integrate their losses in a
meaningful way, managing to reconcile and transcend them.
Comfort in asking questions
An example of such a person is Morrie Schwartz, who wrote
Willingness to assert own needs and wishes relative
about his illness in Letting Go: Morries Reections on Living
to the plan of care
While Dying.6
Initiative taken to research print and Internet
Table 32 contrasts and compares normal grief with depres-
resources on the illness and treatment
sion, to assist the nurse in determining when a patient needs to
Table 31 provides details for doing a psychosocial assessment. be referred for counseling. For further information, consult
More detailed information on the psychosocial aspects of John Schneiders classic work, Clinically Signicant Differ-
oncology can be found in Hollands Psycho-oncology.5 ences between Grief, Pathological Grief and Depression.7
Grief is a normal reaction to loss, especially a major loss In some cases, patients may appear to be having difculties
such as ones health. In chronic illness, grief is likely to be in coping but the nurse cannot easily identify the specic
Table 32 Table 33
Differentiating Normal Grief from Depression General Mental Health Assessment
Normal Grief/Response to Appearance Psychomotor Behavior

Loss of Health Depression Hygiene Gait
Self-limiting but recurrent Frequently not self-limited, Grooming Movement
with each additional loss lasting longer than Posture Coordination
2 months
Body language Compulsions
Preoccupied with loss Self-preoccupied,
Energy
rumination Mood and Affect
Observable symptoms (tics,
Emotional states variable Consistent dysphoria or Interview behavior
perseveration)
anhedonia (absence of Specic feelings
pleasure) expressed Speech
Episodic difculties Insomnia or hypersomnia Facial expressions Pressured, slow, rapid
sleeping
Goal-oriented, rambling,
Intellectual Ability
Lack of energy, slight Extreme lethargy, Incoherent, fragmented,
weight loss weight loss Attention coherent
Identies loss May not identify loss or may Concentration Relevant, irrelevant
deny it Concrete/abstract Poverty of speech
Crying is evident and Crying absent or persists thinking
Presence of latencies (delayed ability
provides some relief uncontrollably Comprehension to respond when conversing)
Socially responsive to others Socially unresponsive, Insight
isolated Thought Patterns
Judgment
Dreams may be vivid No memory of dreaming Loose, perseverating
Educational level
Open expression of anger No expression of anger Logical, illogical, confused
Sensorium/Level of Oriented, disoriented
Adaptation does not require Adaptation requires
Consciousness
professional intervention professional treatment Tangential, poorly organized,
Alert well-organized
Somnolent Preoccupied
problem. The nurse may need to make a more thorough men-
Unresponsive Obsession
tal health assessment to determine the most appropriate refer-
ral. Key elements in such an assessment are found in Table 33. Paranoid ideas of reference
For more detailed psychosocial information, consult Hol- Delusions
lands Psycho-oncology.5 Hallucination, illusions
Blocking, ight of ideas
Neologisms (made-up words)
o]
Introduction to Spiritual Assessment Word salad (meaningless word order)
Presence of suicidal or homicidal
Although Chapter 30 provides a more detailed discussion of ideation
spiritual assessment, the following discussion illustrates the
importance of assessing the spiritual domain as a component
of a comprehensive evaluation.
Attempts to dene spirituality can often result in feelings of power greater than self. Amenta9 viewed spirituality as the
dismay and inadequacy. It is like trying to capture the wind or life-force springing from within that pervades our entire
grasp water. Therefore, assessing and addressing the spiritual being. Hay10 dened it as the capacity for transcending in
needs of patients can be a formidable challenge. Spirituality order to love or be loved, to give meaning, and to cope. Doyle11
may include ones religious identity, beliefs, and practices, but it wrote, Spiritual beliefs may be expressed in religion and its
involves much more. The person without an identied reli- hallowed practices, but a person can and often does have a spir-
gious afliation is no less spiritual. Indeed, the desire to speak itual dimension to his or her life that is totally unrelated to
ones truth, explore the meaning of ones life and illness, and religion and not expressed or explored in religious practice. He
maintain hope are fundamental human quests that reect the further noted that a prerequisite to discussion of spiritual
depth of the spirit. Haase and colleagues8 concluded that the issues with a patient is to create a situation which permits
spiritual perspective is an integrating and creative energy speaking of spiritual problems, i.e. environment, ambiance,
based on belief in, and feeling of interconnectedness with, a and attitude.11
The spiritual issues that arise after the diagnosis of a

serious or life-threatening illness are abundant and varied. Table 34
Categories of Spiritual Assessment
As a person progresses through the phases of an illness
(diagnosis, treatment, posttreatment, and active dying), he Substantive Information: The What of Spiritual Life
or she is confronted with mortality, limitations, and loss. Present religious afliation or past religious background
This frequently leads to questions such as, What is my lifes
Beliefs about God, the transcendent, an afterlife
purpose?, What does all this mean?, What is the point of
my suffering?, Why me?, and Is there life after death? Present devotional practice and spiritual disciplines, like
praying, attending worship services, meditation, yoga, etc.
Indeed, Victor Frankl,12 in his classic work, Mans Search
for Meaning, affirmed that the quest to find meaning is one Signicant religious rituals
of the most characteristically human endeavors. To nd Identication of membership in a faith community and the
meaning in suffering enhances the human spirit and fosters degree of involvement and level of support
survival. Functional Information: The How of Spiritual Life
According to Abraham Maslows13 theory, human needs
Making meaning
can be placed on a hierarchy that prioritizes them from the
most basic physical and survival needs to the more transcen- Retaining hope
dent needs. Thus, a patients ability and willingness to engage Securing a source of inner strength and peace
in dialogue about issues of meaning, to discuss successes and Exploring the relationship between beliefs, practices, and health
regrets, and to express his or her core values may occur only Surviving losses and other crises
after more fundamental needs are addressed. This reality in no
way diminishes the spiritual compared with the physical;
rather, it supports the need for an interdisciplinary approach
that provides holistic care of the entire person. For example, if
One of the fundamental principles underlying spiritual
a physician relieves a young womans cancer pain and a social
assessment and care is the commitment to the value of telling
worker secures transportation for her to treatments, she and
ones story. Alcoholics Anonymous, a very successful program
her family may be more able to address the vital concerns of
with spiritual tenets, acknowledges the power of story. This
her soul.
might be paraphrased as follows: in the hearing is the learning,
The sensitivity of the nurse to a patients spiritual concerns
but in the telling is the healing. Similarly, Thompson and Jani-
improves the quality of palliative care throughout the illness
gan15 developed the concept of life schemes, which provide a
trajectory. When members of the health care team serve as
sense of order and purpose for ones life and promotes a per-
companions to a patient and family during their journey
spective on the world, oneself, events, and goals. Simple, open-
with an illness, they offer vital and life-afrming care.
ended questions, such as, How is this illness affecting you?
Responding to the spiritual needs of patients and families is
and How is the illness affecting the way you relate to the
not solely the domain of the chaplain, clergy, or other ofcially
world? provide the opportunity for validation and explo-
designated professionals. All members of the health care team
ration of the patients life scheme.
share the responsibility of identifying and being sensitive to
spiritual concerns.
It is vital that a patient be viewed not in isolation but in the
o]
context of those who are affected by the illness. Thus, the focus
Cultural Competence
of spiritual assessment includes both the patient and the fam-
ily or signicant others. This perspective afrms the power of
It is unrealistic to expect that health care professionals will know
a systems view, which sees the patient and family as inter-
all of the customs, beliefs, and practices of patients from every
dependent and connected. Providing support to family mem-
culture. There are useful reference sources to assist in gaining
bers not only assists them directly but may also contribute to
cultural competence.16 However, all providers should strive for
the patients comfort secondarily, as she or he sees loved ones
some degree of cultural competence, which has been dened as
being cared for as well.
an educational process, which includes the ability to develop
The purpose of a spiritual assessment is to increase the
working relationships across lines of difference. This encom-
health care teams knowledge of the patients and familys
passes self-awareness, cultural knowledge about illness and heal-
sources of strength and areas of concern, in order to enhance
ing practices, intercultural communication skills and behavioral
their quality of life and the quality of care provided. The meth-
exibility.17
ods of assessment include direct questioning, acquiring
The members of the health care team can increase their
inferred information, and observing. This is most effectively
cultural competence by concentrating on the following:
accomplished when a basis of trust has been established. Fitch-
ett14 noted that spiritual assessments consist of both substan- Being aware of ones own ethnocentrism.
tive and functional information. Table 34 examines these Assessing the patients and familys beliefs about ill-
categories of spiritual assessment. ness and treatments.
2. Document problems and plan interventions with the

Table 35 patient and family to improve their quality of life.
Meeting the Need for Interpreter Services
3. Identify learning needs to guide teaching that pro-
A child or family member should not be used as an motes optimal self-care.
interpreter for major explanations or decision-making 4. Recognize patient and family strengths to reinforce
about health care. Even adult children may feel healthy habits and behaviors for maximizing well-
uncomfortable speaking with their parents or grandparents being.
about intimate topics. Furthermore, many lay people do not 5. Discern when the expertise of other health care pro-
know or understand medical terms in their own language. fessionals is needed (e.g., social worker, registered
Informed consent requires that the patient receive accurate
dietitian).
information that he or she can understand, before making a
health care decision.
It is recommended that the health care team obtain the ser- Physical Assessment at Diagnosis
vices of a certied medical interpreter, if possible.
When the patient has nished telling his or her story about the
In the absence of an on-site certied translator, use AT&T
illness, the nurse needs to do a head-to-toe physical assess-
interpreters. In the United States or Canada, call 1-800-752-
6096 to set up an account and obtain a password. ment. This assessment uses the general categories of head and
neck, shoulders and arms, chest and spine, abdomen, pelvis,
legs and feet, and overall evaluation. The nurse obtains data by
observing, interviewing, and examining the patient. The
Conveying respect, such as saying, I am unfamiliar forms, policies, procedures, and expectations of the health
with your culture. Please help me understand why care agency in which the assessment occurs guide the specic
you think you got sick and what you think will details that are collected and documented. Figure 32 shows
make you better. cues to guide the physical assessment.
Soliciting the patient and family as teachers and Because the family is so important to the palliative care
guides regarding cultural practices. focus on quality of life, the overall health of other family mem-
Asking about the patients personal preferences and bers needs to be documented. Identication of the major
avoiding expectations for any individual to repre- health problems, physical limitations, and physical strengths
sent his or her whole culture. of family members serves as a basis for planning. The physical
Respecting cultural differences regarding personal capabilities and constraints of the caregivers available to assist
space and touch, such as requesting, Whom do I and support the patient may affect the plan of care, especially
ask for permission to examine you? and May I in relation to the most appropriate setting for care. This infor-
touch you here? mation also provides direction for the types of referral that
Determining needs and desires regarding health- may be needed to provide care.
related information, such as asking, When I have
information to tell you, how much detail do you Psychosocial Assessment at Diagnosis
want to know and to whom do I give it?
Noting and afrming the use of complementary and The primary psychosocial feature of a new diagnosis is antici-
integrative health care practices. patory grief. Patients responses to receiving bad news range
Incorporating the patients cultural healing practices from shock, disbelief, and denial to anger and fatalism. As
into the plan of care. further losses occur along the illness continuum, this grief mech-
Responding to resistance from the patient and anism is retriggered, and losses become cumulative. State-
family about the recommended treatment ments such as, I cant believe this is happening to me or Why
plan with understanding, negotiation, and is this happening to us? are signals to the health care profes-
compromise. sional that the patient and family are grappling heavily with
Being sensitive to the need for interpreter services this threat to their equilibrium. There is already a sense that life
(Table 35). will be forever changed. A longing emerges to return to the way
things were.
In response to these emotional states, the health care team
o] is most helpful when they do the following:
Assessment at the Time of Diagnosis
Normalize the patients and familys experiences:
Many people share similar reactions to this kind of
The goals of a palliative care nursing assessment at the time of
news.
diagnosis are as follows:
Use active listening skills to facilitate grief work: Of
1. Determine the baseline health of the patient all that is happening to you right now, what is the
and family. hardest part to deal with?
Figure 32. Assessment at the time of diagnosis: obtaining a base- CHF = congestive heart failure; CP = chest pain; CXR = chest x-
line of the patients health status. Abbreviations: ABCD = How to ray; DOE = dyspnea on exertion; DME = durable medical equip-
assess a skin mole (Asymmetry; Borders, regular or irregular; ment (e.g., wheelchairs, walkers, hospital beds, etc.); DRE = digital
Color, multicolored; Diameter, generally >6 mm); ADLs = activities rectal exam; EKG = electrocardiogram; ERT = estrogen replace-
of daily living; BP = blood pressure; BPH = benign prosatic hyper- ment therapy; Gx = gravida (number of pregnancies), Px =
plasia; BSE = breast self-exam; CAD = coronary artery disease; parity (number of deliveries past 20 weeks, number of abortions.
55
Create a safe space for self-disclosure, and build a

trust relationship: No matter what lies ahead, you Table 36
Common Responses of Children to Serious Illness in
will not face it alone.
the Family
Develop a collaborative partnership to establish a
mutual plan of care: What would help you the Magical thinking that results in feelings of guilt (e.g., I once
most right now? told Mommy I wished she were dead.)
Respect the patients or familys use of denial in the Fears of abandonment, especially in younger children
service of coping with harsh realities: It must be Fears of contracting the disease
hard to believe this is happening.
Anger, withdrawal, being uncooperative, especially in
Assess the patients and familys coping styles: adolescents
When you have experienced difcult times in the
Acting-out behavior with lack of usual attention
past, how did you get through them?
Reinforce strengths. Frustrations with an altered lifestyle because of decreased
nancial resources, less family fun activities because of the ill
Maximize a sense of control, autonomy, and choice.
persons inability to participate, etc.
Assess the patients need for information: What do
you know about your illness?, Are you the kind of Inability to concentrate and focus, especially regarding
schoolwork
person who likes to know as much as possible, or do
you function on a need-to-know basis only?, What
would you like to know about your illness now?
Check the need for clarication: What did you
Help the patient and family explore the benets and
hear? or Summarize in your own words how you
burdens of various treatment options when changes
understand your situation now.
are needed in the plan of care.
Avoid medspeak, which is medical terminology
Assess parental readiness to assist children with
unfamiliar to the average person.
their adaptation needs: How do you plan to tell
Mentor patients and families who have had little
your children?
experience with the health care system, including
Identify family communication ground rules and
coaching them in conversations with their physicians
seek to improve communication among family
and teaching them ways to be wise healthcare
members: Is it OK if we discuss this subject with
consumers.
you and your family?
The nurse must remember that, while the patient is feel-
Assess the coping of children within the family by being
ing strong emotions, the family is also experiencing intense
aware of their fears and concerns. Table 36 describes some
feelings. Similar assessments of family members will help
common responses of children to having an adult loved one
to mobilize resources at critical times. Family members expe-
who is ill.
rience their grief reactions at their own individual rates
Assisting in the process of making initial treatment deci-
throughout the course of the illness. Each family member
sions can be an opportunity to begin a relationship that will
has his or her own particular coping style and need for infor-
continue to grow. Members of the health care team may ask
mation.
questions such as, What is most important to you in life? and
The nurse and other members of the health care team assist
Is quality of life or quantity of life most meaningful? Assist-
the patient and family when they do the following:
ing the patient and family in identifying and expressing their
Observe changes in family members roles and values will guide them in subsequent decision-making.
responsibilities (e.g., the breadwinner becomes a
caregiver, the homemaker begins working outside Spiritual Assessment at Diagnosis
the home).
Identify external community support systems. The diagnosis of a serious illness generally brings with it a
Assist the patient and family in identifying coping sense of shock to the patient and family. It may threaten many
strategies to use while awaiting test results, which is of their assumptions about life, disrupt their sense of control,
one of the most stressful times and which recurs and cause them to ask Why? The health care team can be
throughout the illness. most helpful at this time if they do the following:
number of premature deliveries, number of living children); equal, round, react to light, accommodation; PSA = prostate-
GB = gallbladder; HCP = health care provider/professional; specific antigen; PUD = peptic ulcer disease; ROM = range of
Hx = history; LFTs = liver function tests; LMP = last menstrual motion; SOB = shortness of breath; STD = sexually transmitted
period; Meds = medications; MI = myocardial infarction; disease; TSE = testicular self-exam; URIs = upper respiratory infec-
MMSE = Mini Mental Status Exam; N & V = nausea and vomiting; tions; UTIs = urinary tract infections. Source: Courtesy of Elaine
PAP = Papanicolaou test for cervical cancer; PERRLA = pupils Glass, APRN, BC-PCM.
Determine the patients and familys level of hope- Use a certied medical interpreter for information-
fulness about the future: What are you hoping for? giving, decision-making, and completion of consent
or How do you see the future at this time? forms.
Inquire about how the patient and family have dealt Build trust with Ghedi and Asad by encouraging
with past crises of faith, meaning, or loss: What the integration of their native healing practices into
helped you get through that? the plan of care and by respecting their cultural
Determine the patients and familys comfort level boundaries.
in talking about the spiritual life: Some people Determine who among his male support network
need or want to talk about these things; others Ghedi would allow to assist him in learning how to
dont. How is it for you? care for his colostomy after surgery. (Ghedi would
Inquire about spiritual support persons available to not permit his sister-in-law, Laila, to assist him in
the patient and family (e.g., pastor, rabbi, counselor, any way.)
spiritual advisor). Communicate Ghedis cultural preferences to other
Determine the patients or familys need or desire to members of the health care team.
speak with a spiritual support person. o]
Ask about spiritual self-care practices to promote
healthy coping: How are you taking care of yourself
at this time? o]
Listen for comments from the patient and family Assessment During Treatments
regarding the importance of their religious tradi-
tions and practices. The goals of a palliative care assessment during active treat-
Spiritual goals at this phase are to normalize initial con- ment are as follows:
cerns, to provide information that fosters positive coping, and 1. Assess the patients systems in all domains that are
to encourage the patient and family to seek supportive spiri- at risk for problems, considering both the patients
tual resources. baseline problems and any side effects of the
treatments.
2. Record the current and potential problems and plan
9= early interventions with the patient and family.
case study 3. Ascertain the need for teaching to prevent, mini-
Ghedi at the Time of Diagnosis of Colon Cancer mize, and manage problems with the goal of maxi-
Ghedi was reluctant to seek medical attention for his increas- mizing quality of life.
ing gastrointestinal problems. He found American health care 4. Reinforce patient and family strengths, healthy
confusing and did not want to rely too heavily on his brother, habits, and behaviors to maximize well-being.
Asad, to navigate the system for him. He did not want to 5. Recognize when other health care professionals
appear weak and in need of assistance. Initially, Ghedi relied expertise is needed and make appropriate referrals
on traditional treatments provided by one of the elders in (e.g., physical therapist, pharmacist).
their community. As his gastrointestinal problems persisted,
he nally agreed to allow his brother to make an appoint- Physical Assessment During Treatments
ment for him with Asads primary care physician. At this
point, Ghedi was experiencing severe diarrhea and pain in Reassessments during treatment determine the changes that
the lower abdomen. An x-ray lm revealed an apparent mass have occurred since the initial assessment. Knowledge of the
in the colon; a colonoscopy and biopsy were performed. usual disease process and the side effects of treatment assists
Ghedi was referred to Dr. Yang, a surgical oncologist, for fur- the nurse in focusing reassessments on those body systems
ther evaluation and treatment. This specialist recommended most likely to be affected.
complete removal of the mass, which would probably neces- In addition to the patients physical assessment, the nurse
sitate a colostomy. After much ambivalence and discussion, should make periodic observations and inquiries about the
Ghedi agreed. health of other family members. It is important to document
The ostomy nurse, Mindy, met with Ghedi before the any changes in their health problems or physical limitations
operation to identify the best stoma site. As she explained and physical strengths that might have an impact on the
what she was going to do, Ghedi refused to let her touch him. patients care and the familys overall quality of life.
Asad explained to Mindy that his brother would not allow a
woman to examine him. Remaining sensitive to Ghehis cul- Psychosocial Assessment During Treatments
tural background, Mindy called the male resident and guided
him in marking the correct stoma placement. Once a treatment plan has been initiated, patients often
The goals at this phase of care are to express relief that something is nally being done. Taking
action frequently reduces anxiety. The most important psy- problems associated with severe illness
chosocial intervention at this stage is the amelioration of as (Table 37); for more information contrasting
many treatment side effects as possible. After basic needs for anxiety and depression, consult Hollands Psycho-
physical well-being are assessed and symptoms are controlled, oncology.5
the patient is able to explore and meet higher needs, including Screen for suicidal ideation in cases of depression:
the needs for belonging, self-esteem, and self-actualization.13 Have you been feeling so bad that youve been
Patients who are preoccupied with pain and nausea or vomit- thinking of a way to hurt yourself? and Do you
ing have no energy or ability to explore the signicance of have a plan for how to do it?
their illness or their feelings about it. Effective management of Refer for counseling and possible psychotropic
physical symptoms is mandatory before the patient can begin medication to enhance positive coping and comfort.
to work on integrating the illness experience into the tapestry
of his or her life. Spiritual Assessment During Treatments
After several months or years of treatment, the effects of
having a chronic illness may exhaust even the hardiest person. With the treatment of a serious illness comes the introduction
Patients may begin to weigh the benets versus the burdens of of an additional stressor to the patient and family. It is impor-
continuing aggressive therapies. Initially, patients will endure tant to assess how they incorporate the demands of treatment
almost anything if they believe a cure is possible. As time into their daily routine and how these changes have affected
unfolds, their attitudes may change as they watch their quality the meaning of their lives.
of life erode with little prospect of a more positive outcome. The nurse and other members of the care team will be
Patients may also reprioritize what is most important to them. helpful to the patient and family if they normalize the stress of
For example, the workaholic may nd less satisfaction at the treatment and do the following:
ofce, or the homemaker may experience less fulllment from
daily routines around the house. Change, transition, and exis- Inquire about the patients and familys hopes for
tential questioning characterize this phase. the future.
The nurse and other members of the health care team will Assess the level and quality of support they are
assist the patient and family when they do the following: receivingfor instance, from other family mem-
bers, faith community, and neighbors.
Inquire about the patients newly emerging identity Explore expressions of anxiety and fear by asking,
as a result of the illness: What activities and which What is concerning you the most at this time?
relationships bring you the most joy and meaning? Assess how the patient and family are coping with
or Have you been able to dene a new purpose for the rigors of treatment: What is the most challeng-
yourself? ing part of this for you? and What is helping you
Assess for signs of anxiety and depression, which day by day? Consider referrals to a chaplain or faith
remain the two most common psychosocial community as needed.
Table 37
Assessment of Anxiety and Depression
Signs and Symptoms of Anxiety Signs and Symptoms of Depression
Excessive worry Depressed mood

Trouble falling or staying asleep Insomnia and hypersomnia
Irritability, muscle tension Anhedonia (absence of pleasure)
Restlessness, agitation Psychomotor retardation
Unrealistic fears (phobias) Feelings of worthlessness or inappropriate guilt
Obsessions (persistent painful ideas) Diminished ability to concentrate, make
Compulsions (repetitive ritualistic acts) decisionsor remember
Frequent crying spells, headaches, Recurrent thoughts of death, suicidal ideation
gastrointestinal upsets, palpitations, (lethality assessed by expressed intent, presence of
shortness of breath a plan and the means to carry it out, previous
attempts, and provision for rescue)
Self-medication
Marked weight loss or weight gain
Anorexia or overeating
Fatigue
Interference with normal activities
of daily living
Inquire about the patients and familys denitions 1. Examine the benets and burdens of all interven-
of quality of life and the impact of treatment on tions to manage the residual symptoms remaining
these aspects of their lives: What is most important from the treatments and/or the disease process.
to you in life now? 2. Determine the current physical problems that are
Determine their use of spiritual practices and offer most distressing to the patient and family, and plan
assistance in developing these (e.g., meditation, rehabilitative interventions.
relaxation, prayer). 3. Assess learning needs and provide teaching to
Ask how the patient or family members feel aggressively manage problems with the goal of max-
about their current practices: Are these helpful imizing quality of life.
or not? 4. Continue to reinforce patient and family strengths,
healthy habits, and behaviors to enhance well-being
The health care teams goals are to reinforce positive cop-
and to prevent problems.
ing, mobilize existing spiritual resources, invite the patient and
family to develop new skills for self-care, and continue disclo- Survivors are dened as those patients whose diseases are
sures in an atmosphere of trust. cured, who go into long remissions, or who become chroni-
cally ill. These individuals may require some degree of pallia-
9= tive care for the rest of their lives. Examples of survivors likely
case study to require palliative care include those with graft-versus-host
Ghedi During Treatments for Colon Cancer disease (GVHD), irreversible peripheral neuropathies, or
structural alterations of the integumentary, gastrointestinal,
A few weeks after surgery and the colostomy, Ghedi started and genitourinary systems (e.g., mastectomies, amputations,
on the recommended regimen of chemotherapy. He experi- colostomies, ileostomies, laryngectomies).
enced side effects of diarrhea, nausea, and vomiting. He Psychosocial issues for survivors include fear of recurrence
insisted on the addition of traditional re burning from as well as practical considerations such as insurance and
the Somali elder, who was also the communitys traditional job discrimination. Many patients make major life changes
Somali physician. Ghedi took several herbal preparations regarding work and relationships as a result of their illness
designed to ease his digestive problems. The clinic pharmacist experiences. These patients, even if cured, live with the rami-
determined that the herbs were compatible with Ghedis cations of the disease and its treatment for the rest of their
chemotherapy drugs. Between treatments, Ghedi received lives.
follow-up care from a home care agency. Asad specically Some patients begin to explore, in new ways, the spiritual
requested a male nurse and male aide to provide Ghedis foundations and assumptions of their lives. Often, patients
personal care. relate that in spite of the crisis of an illness and its treatment,
Throughout Ghedis treatment, Asad and the elder were in the experience resulted in a deepened sense of meaning and
attendance and Ghedi increasingly depended on them to gratitude for life. Examples of such growth experiences as a
assist with decision-making. He exhibited a stoic demeanor, result of surviving cancer can be found in Cancer as a Turning
and although the medical team believed he might have been Point: A Handbook for People with Cancer, Their Families and
experiencing pain, Ghedi insisted he was not. Health Professionals20 and Silver Linings: The Other Side of
The goals at this phase of care are to Cancer.21
Ask Asad and the Somali elder to assist the health
care team in assessing Ghedis degree of pain and Physical Assessment After Treatments
discomfort from the side effects of the chemother-
apy. Suggest that the health care team encourage The patient is reassessed after treatments are nished to deter-
Asad and the elder to give Ghedi permission to take mine the changes that have occurred since previous assess-
the pain medication. ments; the focus is on the systems that have been affected and
Continue to respect Ghedis cultural modesty and altered by the treatments. Thorough assessment of the residual
try to accommodate his request for male health care problems and changes in the patients body are critical to suc-
providers. cessful symptom management. Effective management of symp-
o] toms with rehabilitative interventions achieves the goal of
maximizing the patients and familys quality of life, whether
in long-term survival or during the terminal phase. Two exam-
o] ples of functional assessment tools used in physical rehabilita-
Assessment After Treatments (Long-Term Survival tion are the Functional Assessment of Cancer Therapy (FACT)
or Terminal Phase) Scale22 and the Rotterdam Symptom Checklist.23
In addition to the patients physical assessment, the nurse
The goals of a palliative care assessment after treatments are as should continue to make periodic observations and inquiries
follows: about the health of other family members. Noting changes in
family members health, physical limitations, and physical machine, and transfer you to an intensive care unit.
strengths is important to ascertain any impact on the patients You need to think about your desire to have such life
care and the familys lifestyle. support treatments.
An emerging issue that relates to family members health is Considering a discussion about hospice if the
genetic testing for familial diseases. The health care team needs patient begins to question the efcacy of treatments.
to ask patients with diseases that could have a genetic origin Presenting hospice as the gold standard for end-of-
whether they would be interested in receiving more informa- life care. A hospice referral should never be made as
tion. Patients or family members who desire more facts will a gesture indicating that There is nothing more
benet from written materials and referral to an experienced that we can do for you. The benets of increased
genetic counselor. Table 38 provides resource information on availability and services, such as bereavement care
genetic counseling. for the family, should be emphasized.
Discussing the completion of advance directives:
Psychosocial Assessment After Treatments Who would you want to make your health care
decisions for you if you were not able to make
For those patients who are free of disease, palliative care focuses them yourself?
on posttreatment-related symptoms and fears of recurrence. Determining the patients and familys interest or
For others, recurrence is most often signaled by the appearance need for education about death and dying.
of advancing physical symptoms. When this happens, the Discerning risk factors for complicated bereavement
patients worst nightmare has been realized. A recurrence is in family members, as described in Table 39.
experienced differently from an initial diagnosis, because the
patient is now a veteran of the patient role and may under- Spiritual Assessment After Treatments
stand all too well what the recurrence means.
Attention to concerns at this phase of illness include the After treatment, the patient embarks on a journey leading to
following: long-term survival, chronic illness, or recurrence and the ter-
minal phases of the illness. The nurse and other caregivers can
Revisiting the quality versus quantity of life prefer-
provide valuable spiritual support at these junctures when
ences as the patient and family weigh the benets
they do the following:
and burdens of treatment.
Being sensitive to the patients readiness to discuss a
Determine the quality and focus of the patients and
transition in emphasis from curative to palliative
familys hopes for the future. Listen for a transition
care. The patient often signals his or her readiness
by statements such as, Im getting tired of spending
so much time at the hospital or Ive had it with all
of this. Ask: What has your physician told you that Table 39
you can expect now? or How do you see your Assessment of Family Members Risk Factors
future? for Complicated Bereavement
Exploring readiness to set new goals of treatment: I Concurrent life crises
know you understand that your illness has not History of other recent or difcult past losses
responded to the treatments as we had hoped. Id
Unresolved grief from prior losses
like to talk with you about changing your care plan
goals. History of mental illness or substance abuse
Beginning to discuss the patients preferences for Extreme anger or anxiety
resuscitation: If your heart or lungs should stop, Marked dependence on the patient
have you thought about whether or not you would Age of the patient and the surviving loved ones, develop-
want us to try to revive you? This means that we mental phases of the patient and family members
would shock your heart, put you on a breathing Limited support within the familys circle or community
Anticipated situational stressors, such as loss of income,
nancial strain, lack of condence in assuming some of the
Table 38 patients usual responsibilities
Genetic Counseling Information Illnesses among other family members
To locate a genetic counselor in a particular region of the Special bereavement needs of children in the family
United States, contact The patients dying process is difcult (e.g., poorly controlled
National Society of Genetic Counselors symptoms such as pain, shortness of breath, agitation,
delirium, anxiety)
610-872-7608
www.nsgc.org Absence of helpful cultural and/or religious beliefs
from hoping for a cure to another kind of hope Determine the need and desire for reconciliation:
(e.g., hope for a remission, hope to live until a spe- Are there people with whom you want or need to
cial family event occurs). For an in-depth, practical, speak? and Do you nd yourself having any
and inspiring discourse on hope, refer to Finding regrets?
HOPE: Ways to See Life in a Brighter Light.24 Invite a discussion of the most meaningful, celebra-
Listen for comments that suggest a crisis of belief tory occurrences in life to foster integrity, life
and meaning. For example, at recurrence, a patient review, and a sense of meaning.
may feel abandoned or experience an assault on his Assess the patients and/or the familys readiness to
or her faith. Questions such as Why? and Where discuss funeral preferences and plans and desired
is God? and Why are my prayers not being disposition of the body, as noted in Table 310.
answered? are very common. The nurse can best
The main spiritual goal of this phase of illness is to provide
respond to these questions by normalizing them
the patient and family a place to stand in order to review the
and emphasizing that to question God or ones faith
past and look toward the future. This encourages grieving past
can indicate a vitality of faith, not its absence.
losses, creating a sense of meaning, and consolidating strengths
Assess the patients and familys use of spiritual
for the days ahead.
practices: What are you doing to feel calmer and
more peaceful? Consider a chaplain referral if the
patient or family are interested and open to such an 9=
intervention. case study
Inquire regarding the desire for meaningful rituals, Ghedi After Completion of Treatments for Colon Cancer
such as communion or anointing. Consult with local
After his chemotherapy was completed, Ghedi was able to
clergy or a hospital chaplain to meet these needs.
return to work in the housekeeping department of his neigh-
Assess the level and quality of community supports:
borhood elementary school. He was in remission for 2 years
Who is involved in supporting you and your family
before he began exhibiting jaundice. He immediately
at this time?
resumed traditional Somali treatments with his elder, who
Encourage referral to hospice for end-of-life care.
prescribed habakhedi and re-burning. Because colostomy
Listen for indicators of spiritual suffering (e.g.,
care had been challenging for him, Ghedi wanted to avoid
unnished business, regrets, relationship discord,
returning to Dr. Yang. Ghedi told Asad that Dr. Yang was too
diminished faith, fears of abandonment): What do
direct about his future and was offering no hope of recovery.
you nd yourself thinking about at this time? and
Ghedi observed ritual prayers imploring God to heal him and
What are your chief concerns or worries?
relieve his suffering.
Assess the need and desire of the patient and family
A few months after he became jaundiced, Ghedi began
to talk about the meaning of the illness, the
to complain of severe itching. He lost a great deal of weight
patients declining physical condition, and possible
as he experienced more frequent episodes of nausea and
death.
vomiting. One day, Ghedi passed out on the bathroom
Ask questions to foster a review of critical life inci-
floor. Laila called Asad at work. Asad immediately came
dents, to allow grieving, and explore beliefs regard-
home and took Ghedi to the emergency department. Ghedi
ing the afterlife: What do you believe happens to a
was severely dehydrated and had several abnormal elec-
person at the time of death?
trolyte results. The emergency department physician
began administering intravenous fluid and admitted Ghedi
to the palliative care service. The palliative care team
provided comfort medications to relieve Ghedis pain and
Table 310 symptoms. They also offered integrative therapies to
Assessment of Funeral Plans and Preferences relieve Ghedis distress. He agreed to aromatherapy, massage
by a male licensed massage therapist, and music. The pallia-
Has the patient and/or family selected a funeral home? tive care team worked with Ghedi, Asad, and the Somali
Has the patient and/or family decided about the disposition elder to develop a plan of care after discharge. After much
of the body: organ, eye, and/or tissue donation; autopsy; discussion and consideration, Ghedi and Asad agreed to
earth burial (above ground or below ground); cremation; hospice care at home.
simple disposition? The goals of this phase of care are to:
Has the decision been made regarding a nal resting
place? Solicit the Somali elders help in determining how
best to support Asads family in caring for Ghedi at
Does the patient want to make his or her wishes known
regarding the type of service, or will the family decide home.
this? Assist Ghedi in applying for Medicaid, because he
cannot return to work.
Inform the hospice team of Ghedis desire for male In addition to the patients physical assessment, the nurse
health care providers and the need to include the should monitor the health of other family members to prevent
Somali elders traditional healing practices in and minimize problems that could compromise their health
Ghedis hospice plan of care. during this very stressful time.
o] Hospice team members have excellent skills in making pal-
liative care assessments at the end of life. The goal of hospice is
to support the terminally ill patient and family at home, if that
o] is their wish. Many hospice teams also provide palliative care
Assessment During Active Dying in acute care settings and nursing homes. Unfortunately, many
patients die without the support of hospice services in any of
The goals of a palliative care assessment when the patient is these settings.
actively dying are as follows:
1. Observe for signs and symptoms of impending Psychosocial Assessment During Active Dying
death, aggressively managing symptoms and pro-
moting comfort (Table 311). Many people believe that the transition from life to death is as
2. Determine the primary source of the patients and sacred as the transition experienced at birth. Keeping this in
familys suffering and plan interventions to mind, the nurse can help to create a safe environment in which
provide relief. patients and families are supported in their relationships and
3. Identify the primary sources of strength for the the creation of meaningful moments together. The patient
patient and family members so that they can be may also still be reviewing his or her life. Common psychoso-
used to provide support. cial characteristics of the person who is actively dying include
4. Ascertain the patients and familys readiness and social withdrawal, decreased attention span, and decreasing
need for teaching about the dying process. ability to concentrate, resulting in gradual loss of conscious-
5. Look for ways to support the patient and family ness. Experiences normally considered to be psychotic in West-
to enhance meaning during this intense experience. ern culture, such as visions and visitations, are often viewed as
6. Determine whether the family members and friends transcendentand normalat this stage of life by those with
who are important to the patient have had the strong spiritual beliefs.
opportunity to visit in person or on the telephone, Members of the health care team can assist the patient and
as desired by the patient and family. family in the following vital ways:
Normalize the patients reports of seeing deceased
Physical Assessment During Active Dying loved ones or visions of another world.
Encourage continued touching and talking to the
Physical assessment during the active dying process is very patient, even if he or she is unconscious.
focused and is limited to determining the cause of suffering Assist communication among the patient, family
and identifying sources of comfort. Figure 33 shows common members, and close friends.
areas to assess in the last few days of a persons life. Invite family members to give permission to the
patient to let go, providing reassurance that the
family will remain intact and learn to deal effectively
with the persons absence.
Table 311 Assess the patients and familys need for continued
Common Physical Symptoms Experienced by People Who education about death and dying.
Are Actively Dying
Observe family members for evidence of poor cop-
Pain from the illness and/or immobility ing and consider making referrals for additional
Dyspnea support.
Sleepiness
Encourage family members to consider shift rota-
tion in the face of lengthy, exhausting vigils at
Confusion
the bedside.
No interest in eating or drinking
Gurgling sounds in the back of the throat from not being able
to swallow saliva
Spiritual Assessment During Active Dying
Agitation/restlessness/delirium When the patient enters the phase of active dying, spiritual
Coolness in extremities realities often increase in signicance. The nurse and other
Incontinence members of the care team will facilitate adaptation during the
Skin breakdown from immobility process of dying and provide much valuable support when
they do the following:
Figure 33. Assessment when the patient is actively dying: determining causes of pain and
discomfort and identifying sources of comfort. HCP = health care professional; pt = patient.
(Source: Courtesy of Elaine Glass, APRN, BC-PCM.)
Determine the need for different or more frequent Facilitate any unnished business among the patient
visits by the patients or familys spiritual support and signicant others (e.g., expressions of love,
person: Is there anyone I can call to be with you at regret, forgiveness, gratitude).
this time? and Are there any meaningful activities Promote the integrity of the dying person by honor-
or rituals you want to do? ing his or her life. One way to do this is by encour-
Inquire about dreams, visions, or unusual experi- aging reminiscence at the bedside of the patient,
ences (e.g., seeing persons who have died). Normalize recalling the gifts the patient bestowed on the
these if they are disclosed. Ask if these experiences are familythat is, his or her legacy of values and
sources of comfort or fear. Encourage further discus- qualities passed on to survivors.
sion if the patient is interested. Assist the patient and family in extracting meaning
Foster maintenance of hope by asking, What from the dying experience.
are you hoping for at this time? Reassure the Provide sensitive comfort by being present and lis-
patient and family that they can be hopeful and tening.
still acknowledge that death is imminent. Moving Provide information regarding bereavement sup-
toward a transcendent hope is vital. Observe that port groups and/or counseling if indicated.
earlier the focus of hope may have been on cure,
remission, or an extension of time. Now, hope
may be focused on an afterlife, the relief of suffer- 9=
ing, or the idea of living on in loved ones case study
memories. Ghedis Death
Listen for and solicit comments regarding the ef- The Somali community rallied around Ghedi and his brother
cacy of spiritual practices. For instance, if the to assist in offering support to supplement the care provided
patient is a person who prays, ask, Are your prayers by the local hospice agency. Ghedi died at home, as he
bringing you comfort and peace? wanted, with his elder reciting Yasin prayers from the Quran
Realize that expressions of fear, panic attacks, or an as he lay dying. Asads family remained quiet at the bedside
increase in physical symptoms such as restlessness, without overt expressions of grief. A male sheik prepared
agitation, pain, or shortness of breath may indicate Ghedis body for burial by washing, perfuming, and wrap-
intense spiritual distress. A chaplains intervention ping it in a white cloth. Asad, Ghedis nephew, and two male
may provide spiritual comfort and assist the patient elders from the community dug his grave. (This required spe-
in reaching peace. This may reduce the need for cial arrangements with the local funeral service.)
medications. Because the hospice team was so effective in caring for
Determine the need and desire of the patient and Ghedi and his family, the Somali elder was receptive to
family to engage in forgiveness, to express feelings to endorsing hospice services for other terminally ill people in
one another, and to say their good-byes. their community.
Recognize that a prolonged dying process may indi- The goal of the nal phase of family care was as follows:
cate that the patient is having difculty letting go,
perhaps due to some unnished business or fears Encourage Asads family to accept bereavement ser-
related to dying. Assist the patient and family in vices for the family.
exploring what these issues might be. A referral to a o]
chaplain may be very helpful.
Encourage celebration of the life of the loved one by
acknowledging his or her contributions to family o]
members, close friends, and the community. Summary of a Comprehensive Palliative
Explore the need and desire for additional comfort Care Assessment
measures in the environment, such as soothing
music, devotional readings, gazing out a window at A comprehensive assessment of the patient and family provides
nature, or increased quiet. the foundation for mutually setting goals, devising a plan of
Ask the family about their anticipated needs care, implementing interventions, and evaluating the effective-
and preferences at the time of death: Is there ness of care. Reassessments are done throughout the patients
anyone you will want us to call for you? What can illness, to ensure that quality of life is maximized (Table 312).
the health care team do to be most supportive? Are Further sources of information are listed in Appendix 31.
there specic practices regarding the care of the Finally, as Colleen Scanlon25 reminds us, two of the most
body that you want the team to carry out? important assessment questions that nurses and other health
care team members can ask the patient and family, regardless
The goals of spiritual care at this phase of illness are as of the phase or focus of the assessment, are, What is your
follows: greatest concern? and How can I help?
20. Shehan L. Cancer as a Turning Point: A Handbook for People

Table 312 with Cancer, Their Families and Health Professionals. Long
Best Practice Tip Beach, Calif.: Plume, 1994.
Clinicians may nd the use of an abbreviated symptom 21. Gullo S, Glass E, Gamiere M. Silver Linings: The Other Side of
assessment form helpful to track the efcacy of palliative care Cancer. Pittsburgh, Pa.: Oncology Nursing Press, 1997.
interventions. Whereas pain is usually plotted along the 22. Cella DF, Tulsky DS, Gray G, et al. The Functional Assessment of
familiar 010 scale, other symptoms such as nausea, Cancer Therapy Scale: Development and Validation of the Gen-
vomiting, diarrhea, constipation, fatigue, anxiety, and eral Measure. J Clin Oncol 1984;11:570579.
depression can be quickly evaluated on a ow sheet as 0, 23. de Haes JCJM, van Knippenberg FCE, Neijt JP. Measuring psy-
mild, moderate, or severe. These kinds of tools assist in chological and physical distress in cancer patients: Structure and
interdisciplinary evaluation of symptoms without requiring application of the Rotterdam Symptom Checklist. Br J Cancer
paging through lengthy progress notes. In this way, treatment 1990;62:10341038.
can be highly individualized and always evidence based. 24. Jevene RF, Miller JE. Finding Hope: Ways to See Life in a Brighter
Light. Fort Wayne, Ind.: Willowgreen, 1999.
25. Scanlon C. Creating a vision of hope: The challenge of palliative
care. Oncol Nurs Forum 1989;16:491496.
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Rancour, P. Those tough conversations. American Journal of Nursing: Stoll R. Guidelines for spiritual assessment. Am J Nurs 1979;79:
Critical Care Supplement, 2000;100:24HH24LL. 15741577.
Rancour P. Catapulting through life stages: When young adults are Taylor R. Check your cultural competence. Nurs Manage 1998; 3:
diagnosed with life-threatening illness. In: Psychosocial Nursing 3032.
and Mental Health Services 2002;40(2):3237. Warm E, Weissman D. Fast fact and concept #21: Hope and truth
Robertson C. Let the Choice Be Mine: A Personal Guide to Planning telling. EPERC: Educational Materials Fast Facts Print Preview.
Your Own Funeral. Standpoint, Idaho: MCR, 1995. (Available from August 2000. Available at: http://www.eperc.mcw.edu/fastFact/ff_
MCR, P.O. Box 1922, Sandpoint, ID 83864, telephone 208-263-8960.) 021.htm (accessed October 23, 2004).
4o] Constance M. Dahlin and David F. Giansiracusa
Communication in Palliative Care

Talking about all the issues made his last few days and nights for him and our family better, as we
felt a great deal of love and compassion.Wife of 56-old-man with cancer
Key Points A nurse uses a myriad of tools in working with patients. For
Effective communication is essential to all aspects of palliative care. patients with heart disorders, a nurse uses blood pressure
Listening is a valuable component of communication and is a cuffs, scales, and stethoscopes as tools to promote optimal
skill that requires practice and mastery. pressure. For patients with diabetes, a nurse teaches how to use
Nonverbal communication is as critical as verbal communication. glucometers and interpret laboratory test values as tools for
maintaining blood sugars. For patients in the intensive care
unit (ICU), a nurse employs various monitoring devices to
measure jugular venous pressure, oxygen saturation, and vital
signs, as well as ventilators and other tubes and machines as
tools to maintain vital functions. However, for palliative care
patients, the fundamental tool is communication.
Communication is the foundation from which assess-
ments are ascertained, goals of care are developed, and rela-
tionships are established. A patient with an uncertain future
needs honest disclosure, to pursue realistic hopes, and the
most current information, to reorganize priorities and to
make adaptations in coping with his or her disease process.
Effective communication is critically important to elicit the
patients and familys needs, to negotiate goals of care, and to
help patients and family members address concerns.1 Good
communication sets the tone for all aspects of care at this
time of life, allowing patients to paint a picture of themselves
and their priorities, values, and needs in the last stages of life.
Ongoing discussion facilitates expression of feelings by
patients and family members, including their sense of issues
and problems surrounding a life-threatening disease and
their concerns about care. This in turn creates a framework
that serves as a guide for health care providers to establish pri-
orities in care at the end of life, from which the plan of care is
developed. Without effective communication, the patients
experience of suffering is unknown, and effective symptom
control is impossible.2
According to the American Nurses Association, nurses have
a duty to educate patients and families about end-of-life
issues, to encourage the discussion of life preferences, to com-
municate relevant information for any decision, and to advo-
cate for the patient.3 However, many nurses are uncomfortable
67
communicating with dying patients. Various studies have iden- Within the spectrum of health care, nurses are trusted
tied a lack of communication in addressing care wishes and members of the health care team at the time of diagnosis, dur-
inadequate knowledge and skill in end-of-life-care communica- ing treatment, and in the nal stages of life. Through effective
tion.4,5 The barriers to communication are multidimensional. communication, the nurse has a pivotal role in supporting the
Patients often avoid talking about their pain, anger, sense of loss, patient. Indeed, the nurse may have the best opportunity to
sense of guilt, and fears due to embarrassment, shyness, confu- learn the patients hopes, fears, dreams, and regrets and to cre-
sion, and cultural prohibitions. Families may be unable to talk ate a healing environment. Many nurses have not had either
about the advanced nature of their loved ones illness. They may the training in communication as part of their education nor
have no knowledge of the patients preferences for types of care. the luxury to work collaboratively with other health disci-
Not surprisingly, families tend to overestimate the possibility of plines to learn these skills. This chapter reviews the funda-
cure and to fear experiencing future regrets if they do not pur- mental elements of communication and the roles of the nurse
sue or demand further curative treatment. in communicating with patients, facilitating the communica-
Nursing issues in communication include fear and medical tion process in advanced care planning, helping to set goals,
and legal issues. One concern is the supposition that bringing and delivering bad news. A discussion of the nursing role in
up issues related to dying or advanced care planning will cause collaborative care and conict resolution is also included.
emotional distress. Nurses may anticipate conict between
patient and family. They may have concerns about medical
and legal issues related to their scope of practice. Yet, nurses o]
are often the rst health care providers to identify problems in Historical Perspective
regard to advanced care planning, goals of care, conict between
patient and family wishes, and use of life-sustaining measures. Communication about the end of life has changed dramati-
Moreover, Falloweld6 suggested that some physicians believe cally since the 1960s, when death and dying were closed, unac-
nurses are more capable than they are of talking with dis- knowledged topics. Field and Copp7 described an interesting
tressed patients and families. However, many nurses feel movement in communication with dying patients. Initially,
uncomfortable with their communication skills, feel the pres- the topic of death was avoided with patients and was discussed
sure of too little time, or feel threatened by such conversations. only among health care providers. Moreover, communication
Yet, in our experience, the majority of palliative care consulta- skills were considered to be intuitive or inherited traits. Practi-
tion is spent on discussions of care goals. tioners either had empathetic and effective communication
Across the palliative care spectrum, communication occurs skills, or they did not.2 For patients being cared for by an uncom-
at critical junctures. Depending on the prognosis of the municative or ineffective clinician, dying could be an isolating,
patient, these communications may occur over a long or a anxious, fearful, mistrustful experience that translated into a
short period of time. The initial communication consists of sense of abandonment. In such a situation, families experience
introduction of the nurse and patient, perhaps at the time of complex grief and bereavement and increased stress. For
the initial diagnosis of a potentially life-threatening illness. nurses, this indirect communication and lack of truth-telling
During this time, the patient and nurse get to know each in the dying process results in greater stress, anxiety, and inau-
other. The tasks of the nurse at this stage are to elicit personal- thentic communication, which translates to guilt, internal
ity and coping styles and to explore the patients understand- conict, and a sense of failure.
ing of his or her illness. Additionally, the nurse identies any From the 1960s to the 1980s, the principles of informed con-
existing advanced care planning and determines priorities and sent and autonomy became valued in health care. In the 1990s,
goals of the patient. The task of the patient is getting to know as truth-telling became a central focus of terminal care, death
the nurse as a member of the health care team. This commu- became a more open topic of discussion for patients. For better
nication may proceed smoothly until the patients condition or worse, without any consideration to the uniqueness of
changes, at which time the focus of care may change. At this patient/family systems, patients and families were informed of
point, the patient seeks trust and reassurance from the nurse, death and dying irrespective of their wishes to know such infor-
including continued involvement. Later, there may be a dis- mation. Active participation of patients in their care became the
cussion of bad news, in which the reality of the situation is underlying value that led to a greater sense of control and
addressed and mutual goals are established. During this time, diminished anxiety. However, this shift did not necessarily allow
conicts may be negotiated or life-sustaining treatments dis- for the individual issues of patients to be discussed, such as
cussed. The nurse may be a part of these discussions; if not, the whether they wanted to be involved in making decisions. Cur-
nurse may later serve to reinforce the information. Finally, as rently, the trend is a conditional process that supports the
the patient is dying, communication with the patient and fam- patients individual coping style. This allows for care to follow
ily often focuses on such issues as support of decisions, con- the patients individual personality, particularly in terms of the
tinued reassurance that comfort will be maintained, and patients level of acceptance or denial of the dying process.
anticipatory grieving. Communication with family members Given this need to identify and treat each patient individu-
continues during anticipatory grief and, after the death of the ally, communication skills are essential to provide optimal
patient, during bereavement. nursing care. Interestingly, a shift in communication theory
Communication in Palliative Care 69
has simultaneously occurred. The research has demonstrated affords the nurse many opportunities to create positive com-
that communication skills, like any other skills, can be acquired munication encounters. The plethora of opportunities to begin
by health care providers.2 Therefore, communication educa- dialogue about death and dying include, in addition to planned
tion should be initiated at every level of education for nurs- meetings, moments of privacy between nurse and patient dur-
ing, regardless of the degree with which nurses are entering ing bathing, feeding, and self-care activities.
practiceassociates degree, bachelors, masters, or post- At the masters or advanced practice level, critical nursing
masters education. However, there is also a need to provide communication skills include discussions of diagnosis, treat-
continuing education in communication for nurses currently ment options, and prognosis; delivery of bad news when dis-
in practice. ease progresses; transition into palliative care; discussions of
life-sustaining treatment; facilitation of family meetings; dis-
cussion of postdeath options such as autopsy or organ dona-
o] tion; and grief and bereavement support. However, the issue of
Importance of Communication which consultation is used is important to the APN. In the
medical model primarily used in the academic setting, the
In the health care environment, communication, whether focus is on expertise in palliative care. In the nursing model,
intentional or not, occurs all the time between nurses and the focus is on coaching or mentoring, depending on the cul-
patients in every aspect of care. Patients consider communica- ture and environment of the work setting.
tion skills to be very important. Bailey and Wilkinson8 per- Lack of education or training or lack of personal and pro-
formed a qualitative study that evaluated patients perceptions fessional experience with death and dying11,12 results in little
of nurses communication skills and attributes of a good nurse. exposure to end-of-life communication. Unless nurses are
Twenty-nine patients were surveyed about communication. mentored or coached by colleagues, lack of condence in per-
Patients specied that nurses must have good verbal and non- forming these tasks leads to avoidance of participation in dif-
verbal skills and be approachable, sympathetic, and nonjudg- cult communication encounters. Other nurses may have
mental as well as caring. Patients also felt that a good nurse has discomfort with communication in such circumstances due to
the personal characteristic of being a good listener and the personal struggles of unresolved grief, fear of their own mor-
professional quality of being a good communicator. All of tality, or fear of being emotional in front of a patient.13,14 Never-
these are important characteristics of general nursing. Clearly, theless, in order to be effective in dealing with patients at the
nursing and communication at the end of life go hand in end of life, nurses must examine their own feelings about
hand. death and dying, receive support for their personal grief, and
Communication needs of the nurse include skill acqui- seek mentoring to improve communication skills.
sition, credible knowledge in the area of end-of-life care, Communication during the end-of-life period is critical.
empowerment to participate and communicate in death and The players involved in the communication process include
dying discussions, and appropriate communication behav- the patient, the nurse and health care providers, and the fam-
iors.8,9 Moreover, communication skills affect the success of ily or support people. Each person has different needs, related
the nurse in her various therapeutic roles, including advocacy, to personal communication styles and learning styles. Com-
support, information-sharing, empowerment, validation, and munication styles vary by speech, tone, intensity, amplitude,
ventilation.10 and speech patterns. Learning styles include seeing, hearing,
There are two levels of necessary communication skills doing, or a mixture of all three. Therefore, it may be necessary
based on education and expertise. At the registered nurse or to use a variation of verbal discussion, written materials, and
generalist level, critical communication skills include, but are videos.
not limited to, listening and supporting patients in coping There are several needs of the patient, including manage-
with their disease, providing information to patients so that ment of symptoms, support from family and friends, fulfill-
they can make important decisions, being present at the deliv- ment of family or cultural expectations, attaining meaning,
ery of bad news, being present in family meetings, reinforcing and maintaining dignity and control.15 Discrete communica-
information to give consistent content, reviewing options of tion needs of the patient related to these issues include
care, supporting decision-making, advocating for the patient obtaining information, synthesizing the information, mak-
and family, reviewing signs and symptoms of dying, facilitating decisions, and trying to maintain some sense of control.
ing communication between the patient and family, being The nurse serves to assess these areas, particularly in times of
present in the dying process, providing postdeath care and stress, when information processing may be impaired. As
direction, and providing support in grief and bereavement. Pasacreta and colleagues16 described, a person who is mildly
Some generalist nurses consider the role of information shar- anxious may be able to process information and, in fact, may
ing and any discussion of diagnosis and treatment to be out- be quite creative. Indeed, mild anxiety helps most people
side their scope of practice. However, from the perspective of do their work by being alert to issues, identifying problems,
the advocacy role in nursing, information sharing empowers and facilitating creative solutions. Some patients experience
the patient to make informed decisions. Moreover, the very mild anxiety simply by participating in a preventive health
proximity of the nurse in the direct bedside caregiving role encounter. In this situation, the nurse may provide basic
health information. However, as anxiety increases toward o]

a moderate level, as often occurs with receiving news about Communication Framework
disease progression, information processing becomes selec-
tive. In terms of patients, this means that when something Communication comprises both verbal expression, including
scary or threatening is communicated, the patient may not various words and language, and nonverbal expression or the
be able to take in much information. For instance, a patient use of body language. Other aspects of communication
may be told that an x-ray film looks abnormal. At that point, include the educational level of content, the emotional expres-
the patient has a heightened awareness and may be thinking sion, and the nature of the relationship between the sender
of possible issues. In this case, the nurse provides support and receiver, or between the patient and the health care
to the patient in allowing the patient to ventilate fears and provider.21 Communication can be affected by myriad factors
concerns and reiterating information that the team has pro- including, but not limited to, education of the patient and
vided. family; literacy of the patient and family; cultural issues of the
In cases of severe anxiety and panic, such as when hearing patient and family; English as rst language; stress, coping,
bad news in the form of a short prognosis or lack of options, a and anxiety of patient and family; use of medical jargon, par-
patients information processing may be totally impaired.16 ticularly three-letter acronyms; and assumed common under-
This occurs when a patient is given a terminal diagnosis. As standing of vocabulary.21,22
soon as the physician or the advanced practice nurse (APN) Nurses often act as translators between the various health
gives bad news of such gravity, the patient may then not be disciplines and providers and the patient/family. By the virtue
able to hear anything else. He or she may have gone into shock of their constant bedside presence, nurses must create the
or panic about the news and cannot comprehend other infor- optimal method of interaction with a patient. This includes
mation. This is important for the timing of further communi- assessing the patients coping and learning styles and discern-
cation and follow-up of such an event. Nurses have an ing the patients ability to understand simple requests to pro-
important role in validating the patients reactions and offer- mote healing, as inuenced by his or her mental status and
ing support in determining what further information the severity of illness. The process itself varies according to the age
patient may need. and cognitive development of the patient. For children and
The existential aspects of end-of-life communication some older adults, the family or support unit is primarily
include disclosure, searching for meaning, and responding to involved in the information process. Their intimate proximity
grief reactions to the received information.17,18 Exploration allows nurses to broach sensitive topics based on the hours
surrounding life-threatening illnesses can help a patient live they spend at the bedside. More specically, according to
while dying, lessen fear, and achieve quality of life during this Pierce,23 nurses fulll three critical communication tasks in
process.19 end-of-life care: (1) they create an environment conducive to
The communication needs of the family and other sup- communication, (2) they ease interaction between physician
portive people depend on their role in the family system, age, and patient, and (3) they facilitate interaction between family
decision-making ability, and other rules within and specific and patient. The case study is an example of opening dialogue.
to the family. Families are often very involved in care,
but they may also have multiple home and work responsibil-
ities. Therefore, it may be a challenge for family members to 9=
be present at the bedside. Families may experience a high case study
level of frustration from the need for constant updating Mr. L, a Man with End-Stage Cardiac Disease
of information in order to organize and prioritize other
Mr. L, a 70-year-old man with end-stage cardiac disease, has
activities around their caregiving role. In an attempt to bal-
been treated with a number of medications but has been hav-
ance their self-care issues, they may not be present for
ing more angina. The cardiac team has told him there is no
important informal information sharing unless a meeting is
further treatment. They said they will try to keep him com-
scheduled.
fortable but that he was to expect more pain. They are plan-
To facilitate participation in the patients care, families
ning on sending him home with various medications and
need communication regarding several issues: understand-
home health services in the next day or so.
ing what is the care plan is, what is currently being done, and
how they can be helpful; reassurance of the patients com- nurse: Hi, Mr. Jones. I will be your nurse today. How are
fort; support in coping with the patients condition; and you feeling?
support in being with the patient.15 Correspondingly, the mr. l: I am okay, but I am in pain. So many people
communication needs for the patient include information, have been poking at me.
ongoing explanations of the rationale for care, the need to nurse: Can you tell me a little about your pain?
be listened to, and the opportunity to participate in impor- mr. l: My chest hurts like they said it would. But there
tant discussions.20 For both the patient and the family, the is nothing more they can do. I guess I should just forget
nurse is the pivotal clinician in fostering the communication about it and try to make the best of it.
processes. nurse: What did the doctors tell you?
mr. l: They said it would hurt. My heart isnt working well. or he is to process information. Therefore, imparting informa-
nurse: Hmm, what do you understand about your heart? tion usually means providing information at a fth or sixth
mr. l: The heart doctors said my heart is broken and not grade education level and at small intervals, to allow patients
working right. There is nothing to be done. I just and families to best hear and process what is being said.
have to wait till it stops.
nurse: Well, that is a lot to take in. Let me help you
9=
understand better. It is true your heart is not working
case study
well. And it is true we cannot get it back to normal. But
JQ, a Young Woman with Recurrent Melanoma
we can use medicines to keep you comfortable. We are
not just waiting for it to stop. I could give you some JQ is a 19-year-old young adult with recurrent melanoma.
medicine to help your pain now. She was originally diagnosed when she was 16 years of age.
mr. l: You can? I thought there were no more medicines She underwent surgical excision and aggressive chemother-
that would help. apy. She is struggling with her diagnosis.
nurse: I can give you medicine to help the pain. It wont
jq: I cant believe this. I want to go out with my friends.
x your heart, but it will make you feel better.
I cant be sick now. I have too much going on. They
mr. l: That would be good. I thought they were just wait-
did the tests too quickly and didnt read them
ing for me to die and didnt want to give me pain
properly. They will just have to redo everything as I
medication until I was close to dying.
dont believe it.
Here the nurse promotes an open environment for the nurse: It must be hard to go through this.
patient to ask questions and claries communication that jq: Go through what? They just didnt do the tests right. I
has occurred between the patient and the physician. plan on leaving here and I will come back when they
o] can focus on me. There have been too many people.
Besides, my parents told me not to worry.
nurse: Can you tell me what your doctor told you?
o] jq: My cancer doctor told me I was cured of cancer. But I
Elements of Communication just have a little spot on my stomach. They just need to
work on it. It is no big deal.
There are four basic elements to communication: imparting nurse: What is your understanding of your type of cancer?
information, listening, information gathering, and presence jq: I have melanoma, which they can cut out and give me
and sensitivity. Realistically, these elements do not occur in a chemotherapy. They just need to gure out what to cut.
linear fashion but may occur concurrently. However, for the nurse: This must be hard to take in. Would it be helpful
sake of simplicity, they are discussed separately here. to set a time to talk with your doctor again?
Here the nurse listens to the patient to hear what she under-
Imparting Information stands and to assess her ability to process new information.
Because the young woman is having difculty processing the
As nurses, our role is to impart information. This often news, the nurse allows her to vent and validates her feelings.
includes teaching, educating about illness, and providing gen- o]
eral information about treatments. APNs may offer other infor-
mation, including diagnosis and treatment options. Imparting Listening
information is complex, because information alone is not
enough. Rather, information must be provided within the Listening is an active process that requires full presence and
appropriate context of educational level, developmental level, attention. Specically, one both listens to the words and inter-
stress level, and time constraints. The patients educational prets nonverbal gestures. Often it is very helpful to hear the
level and understanding of medical language affects his or her patients story in his or her own words. This allows better under-
information processing. Many patients have not nished high standing of the patients journey within the disease trajectory
school; they may not understand complex words, or they may and of how the patient is processing information. The nurse
not understand many English words if it is their second lan- must perceive the verbal content of the patients responses as
guage. Developmental language refers to the age of the patient well as the words left unsaid. Concurrently, the nurse perceives
and his or her ability to reason. Younger children do not have the nonverbal expressions of emotion and of psychological or
complex reasoning abilities, whereas adolescents do. Infor- spiritual distress.24 In this process, the nurse listens to the
mation for pediatric patients and families must meet their patients words and concerns without interrupting. The use of
particular needs, and the same is true for those patients with silence is paramount. The nurse must not be mentally preparing
developmental delays or cognitive decits. The stress of being answers or replies; rather, the nurse uses self-reection and con-
in a health care setting impairs a persons ability to process in veys empathy. The nurse claries what has been heard by such
information. The more anxious a person is, the less able she comments as, Hmm or, Tell me more. By acknowledging the
patients comments and emotions and exploring their meaning Here the nurse listens to the patient and her language. She
in a compassionate and supportive way, the nurse encourages shows that she is really listening by using the patients own
the patient to explain difcult issues and concerns.25 There may words and having the patient dene what she means. The
be times when the patient is silent. In this circumstance, it may nurse also provides support by not trying to have all the
appropriate for the nurse to just sit quietly, letting the patient answers and by letting the patient guide the conversation.
reect on the moment and the current situation. o]
Information Gathering
9=
case study To gather information from patients, the use of open-ended
PM, a 21-Year-Old with a Neurogenerative Disease questions is most effective. This allows the patient to tell his or
her story in narrative. During this process, the nurse thera-
PM is a 21-year-old woman with a progressive neurodegener- peutically uses open-ended questions rather than yes-or-no
ative disorder that has left her quadriplegic. She has devel- questions or closed-ended questions. Open-ended questions
oped respiratory weakness necessitating ventilatory support. allow the patient to tell his or her story, whereas closed-ended
Although she did not want treatment, PM was convinced to questions limit the patients answer and thereby inhibit elabo-
undergo a tracheostomy with mechanical ventilatory sup- ration, explanations, and clarications from the patient. Open-
port. She went to a rehabilitation hospital for 2 months then ended questions promote a richness in hearing the patients
returned home. She is now at home and has asked the pallia- words and nonverbal cues, which express issues of importance
tive care nurse (PCN) to talk with her about her situation. and priorities of care.26 Open-ended questions may take many
After introductions, the nurse and the patient begin talking. directions in terms of coping, life priorities, and spiritual
pcn: PM, how are you doing? concerns.
pm: I am stuck. I am on the breathing machine. I had this A nurse may not be able to ask many questions. However, a
trach done because they told me I would have a better few key questions can set a tone of a caring relationship with
life. Nothing has changed. I cannot leave this room. I the nurse. See Table 41 for a list of questions. Once such a
am not going to get better, I will only get worse. I can question is asked, it is essential to listen to the answer. Often
still talk a little now, but for how long? How long do I important questions are asked, but, as the patient starts to
have to suffer like this? answer, the conversation moves on, with no time or attention
pcn: PM, you have been thinking a lot about treatment. being given to hearing what the patient is expressing, no further
You said you are suffering. Can you tell me more? elaboration, and no response to the patients verbal and non-
pm: This is suffering. I have nothing to look forward to. I verbal messages. This can cause resentment in the patient if he
will never be able to walk. I cannot eat; I need this tube.
Soon I will not be able to talk. This is not what life
Table 41
is about.
Sample of Open-Ended Questions to Begin
pcn: Hmmm. Discussions About Life-threatening Illness
pm: My parents are exhausted because they must do
everything for me. Can you imagine what it is like to be What concerns do you have about your illness?
in my body? There is no pleasure or joy. I cannot go on How are you doing with your illness?
like this. I do not want to live by machines. I want to be How is treatment going for you?
able to do more. However, I cannot. I was talked into What are your worries?
having this trach. But it has brought more grief. It is
What are your hopes?
the big monster that controls my life. I want to take
control. I want to be the one who shuts down the Who is important to you?
machine, not the other way around. (Tears roll down Who provides support to you?
her face.) What gives you meaning in your life?
pcn: (Silence) What gives you joy in your life?
pm: I am tired of living like this. Please help me take con- What provides you with the strength to live each day?
trol by withdrawing the vent.
Do you consider yourself spiritual or religious?
pcn: I can hear your suffering. This must be very difcult.
When you talk about withdrawing the vent, do you What rituals are important to you?
understand what it means? Is there any unnished business you need to attend to?
pm: It means I will die. I have thought about it. This is not What relationships are the most important to you?
quality of life. Can you understand that?
pcn: (Nods yes) Source: Adapted from City of Hope National Medical Center and the
American Association of Nursing (2003), reference 10, and Quill (2000),
pm: Could you live like I am and think it is quality of life? reference 27.
I dont want to be like this. Please help me.
or she has shared something intimate without acknowledg-

ment as to its signicance. The following is a sample of the use Table 42
Useful Cultural Assessment Questions
of open-ended questions.
Where were you born and raised?
9= What do you want to know about your medical
case study condition/illness?
Ms. M, a Woman with Metastatic Ovarian Cancer How do you describe your medical condition/illness?
How have you treated your medical condition/illness?
Ms. M is a 50-year-old woman with metastatic ovarian can-
cer. She has no further treatment options. However, she Who else, if anyone, do you want to know about your
medical condition/illness?
has come in for thoracentesis and paracentesis.
Who else, if anyone, should we talk to about your medical
nurse: How are things going at home? condition/illness, treatment options, and the disease
ms. m: It is really hard. I am in more pain. I cant get process?
around as much. I hate staying in bed. I feel like a Who is responsible for your health care decisions?
burden to my family.
Who are important people in your community?
nurse: In what way are you a burden?
What do you fear most about your condition and its
ms. m: I have to ask them for everything. They must bring
treatment?
me my pills, bring me meals. They must even help me
to the bathroom. It is so embarrassing. I used to take Source: Adapted from Lapine et al. (2001), reference 28; Kagawa-Singer
care of them. Now they must help me. It doesnt seem and Blackhall (2001), reference 29; and Buchwald et al. (1994), reference 30.
fair. How can I keep doing this to them?
nurse: What do you feel you are doing to them?
ms. m: I am making them focus on me instead of their
In these situations, nurses must rst examine their own cul-
lives. It is not fair.
tural backgrounds and be aware of their own ethical values and
nurse: What is giving you strength?
beliefs. Then, they can assess the communication patterns of
ms. m: I am not sure. I used to think my religion did. Now
the patient and the family, using questions from Table 42. For
I dont know, because it makes no sense.
example, the nurse may ask the patient how she wants to
nurse: What makes no sense?
receive medical information. The patient may state she wants
ms. m: This disease. How did this happen?
to hear it directly, or she may defer to family members. Next,
nurse: (Quiet)
the nurse helps the patient identify others whom she wishes to
ms. m: This disease stinks and it is making me rethink all
be told about her medical issues. The nurse then may help the
sorts of things I took for granted.
patient state who she wants to make health care and treatment
nurse: Like what?
decisions.
ms. m: All the things I thought I would do and cant.
If the patient and family do not speak English as a rst lan-
nurse: What were those things?
guage, it is incumbent to use an interpreter for any discus-
ms. m: Getting my family in order.
sions. Too often, family members are asked to interpret from
nurse: How can we help you to still do some of
English to another language, which puts them in a double
those things?
bind. Culturally, although they may be translators, they must
ms. m: I am not sure, but I will think about it.
also act within their family roles and may need to protect the
Here the nurse promotes open dialogue by asking open- patient from information depending on cultural norms.
ended questions to learn more about the patient and her coping. Translating family members may withhold information if they
o] are not comfortable with another family member knowing it.
As a result, it may be very unclear what the patient has actually
Sensitivity been told.28 For this reason, a translator not known by the
family must always be used. The following example demon-
Sensitivity, another term for cultural competence, includes strates how a nurse may facilitate appropriate cultural care.
issues pertaining to religious, spiritual, cultural, ethnic, racial,
gender, and language issues and is a very important element of
9=
communication. Not only is it important to appreciate verbal
case study
cues, but also it is critical to interpret nonverbal cues. Com-
Mrs. C, a Woman with End-Stage Renal Disease
munication varies in different cultures. In many situations,
benecence takes precedence over autonomy. Disclosure and Mrs. C is a 75-year-old Chinese woman with end-stage renal
nondisclosure must be viewed within the context of the disease who is starting dialysis. She was admitted for weak-
patient and the family, with understanding of and respect for ness, pain, and anorexia. Her dialysis nurse meets her when
their values and beliefs. she comes to start dialysis while still in the hospital.
nurse: Mrs. Chen, I am going to be your nurse when you o]

come to see Dr. Lee. May I ask what you know about Methods and Techniques of Communications
your condition?
mrs. c: I know I am sick, but I dont want to know any The context in which communications occur, including the
details. I want my family to know and make decisions verbal and nonverbal content of messages, the tone, and the
for me. emotional affect of the participants, inuences the process and
nurse: Is there anyone in particular in your family who is outcomes of interactions. Important information is best con-
making these decisions? veyed face-to-face, allowing observation of verbal as well as
mrs. c: My son. nonverbal communication by various team members. Sched-
nurse: If you need further therapies, do you want us to uled meetings are good for both patients and health care
discuss this with you or your son? providers. For the interdisciplinary health care team, scheduled
mrs. c: I want my son to make all decisions for me. meetings allow for preparation of the important information
nurse: Do you have any questions? to be shared, including medical facts, prognosis, treatment
mrs. c: No, I know everything I need to know. options, and sources of support and guidance. They promote
nurse: If you have any questions or want to know any- collaborative care by allowing the team (nurse, physician, social
thing, you can always ask. Even though you want your worker, and other clinicians) to review the information in
son to make decisions, I would like you to feel as order to provide a unied and consistent message to the patient
much a part of the process as you feel comfortable and family. They also allow the bedside nurse to organize his or
with. her day so as to be part of these important discussions.
mrs. c: Thank you. The timing of communication is important. Quill and col-
leagues33 dened the following urgent situations that neces-
Here the nurse claries and validates the patients informa-
sitate immediate communication: (1) the patient is facing
tion preferences while promoting allowance for these to
imminent death; (2) the patient is talking about wanting to
change if the patient desires.
die34; (3) the patient or family is inquiring about hospice;
o]
(4) the patient has recently been hospitalized for severe, pro-
In addition to these aspects of communication, there are gressive illness; and (5) the patient is experiencing severe suf-
general behaviors that facilitate good communication and fering and poor prognosis. Less urgent situations that require
general behaviors that inhibit communication. Facilitating more routine planned meetings include (1) the discussion of
behaviors include open-ended questions as discussed ear- prognosis, particularly if life expectancy is thought to be
lier, questions with a psychological focus, clarication of psy- between 6 and 12 months; (2) the discussion of treatment
chological issues, empathy, summarization, and hypotheses options with low probability of success; and (3) the discussion
about how the patient may be feeling. Inhibiting behaviors of hopes and fears. End-of-life communication in more rou-
include closed-ended questions, leading questions, physically tine circumstances, when stability or recovery is predicted,
focused questions that do not address affect or coping, and normalizes the discussion of advanced care planning. These
advice-giving.31 discussions assist the determination of the patients values,
goals, fears, and concerns while also developing the core issues
for patient education, including the right to high-quality pain
o] control and symptom management.27
The Scope of Communication Scheduled meeting times are critical in allowing the patient
to prepare emotionally and psychologically for any potential
Communication among nurse, patient, and family is a contin- news. This includes allowing for the presence of the patients
uous process throughout the spectrum of the disease. A pow- support network to hear and validate information conveyed.
erful therapeutic intervention in and of itself, communication Nurses play a vital role in these meetings because they are
creates a dialogue32 for the exchange of information and under- often responsible for arranging the meeting and securing a
standing throughout the course of care. At the time of diagno- comfortable space. Before the meeting, the nurse may assess
sis, discussions include the anticipated course of the illness the patients physical, emotional, and psychological concerns.
and treatment options. As the disease progresses, discussions This information can assist the team in planning discussion
focus on symptom assessment and additional diagnostic and points at the scheduled meetings.
therapeutic interventions. Later, when the patient reaches the When such a meeting occurs, several steps are important.
point at which further curative options are no longer appro- After introductions have been done, the goals of the meeting
priate, the focus of care changes to comfort, anticipating the can be stated. Then the patient can be asked about his or her
dying process, and family bereavement. Thus, in addition to understanding of the medical condition and situation. This
serving as the tool for exchange of information, communica- is followed up by ascertaining the patients worries and fears,
tion serves to facilitate human relationships and connections how much information the patient wishes to know,35 and
among nurses, patients, and families. which other people the patient wishes to be informed or
involved in his or her care. A patient who is hesitant to express kz: I will be okay soon. I can do it.
emotional concerns may need prompting or an invitation to onp: K, do you remember when we met you said you
speak. With overbearing families, it may be important to rein- wanted me to be direct and honest with you.
force the goals of the meeting and to restate that the focus of kz: Yes.
care is on the patient.36 The nurse may facilitate the initial con- onp: Well, I need to be honest now. I am not sure you will
versation by serving as a reference point for the patient and be able to tolerate more treatment. I think things are
family in conveying important conversations and concerns changing.
at the beginning of the meeting and personalizing the dis- kz: What do you mean?
cussions to the specific needs of the patient and family. In onp: K, remember that the last time you were here your
addition, the nurse may act as a translator between the med- cancer had grown. I am sorry but I have to tell you it is
ical team and the patient, facilitating information sharing, still growing. We are concerned that giving you more
interpreting information and medical jargon in language chemotherapy would do more harm than good now. Is
the patient understands, and also ensuring that the mem- that true, Dr. J?
bers of the care team understand the patients words and dr. j: K, I know you want to be cured. But as we discussed
language. last time, when the other chemo didnt work, we dont
have very many options. None of the chemotherapies
we give you now will cure you. It may have a very small
9= chance as slowing the growth.
case study kz: I can still do it. I will be okay.
KZ, a Woman with Metastatic Nerve Sheath Tumor dr. j: K, you are weak and having so many side effects
KZ is a 30-year-old woman with metastatic nerve sheath that I cant offer it right now. If you get stronger, we
tumor. She has undergone multiple surgeries, various may be able to do it. But right now, you have to take an
chemotherapy regimens, and some radiation. KZ is cared for ambulance to get here.
at home by an extended family. Her oncology nurse practi- onp: Dr. J and I have been discussing this, and we are
tioner (ONP) was called to the home by the home health afraid the side effects are too great. We would like to
nurse because KZs condition was declining. KZ is bedbound, focus on your comfort.
with lower extremity paralysis and left hip pain. After much kz: If I get better, would you still give me chemo?
discussion and consideration, she is brought to the hospital onp: If you got better we would still give you chemother-
for symptom management and transition of care. A meeting apy, but we dont think that will happen. We would like
is scheduled by the ONP with the oncologist, the primary to have palliative care work with us to focus on your
nurse, and the palliative care nurse practitioner. The goal of comfort.
the meeting is to discuss code status and further treatment. kz: I just want you to stay involved in my care.
At the meeting, KZ is in her bed surrounded by her many Here the ONP builds on her strong relationship with the
family members and the health care team. The oncologist patient as well as referring to previous conversations to con-
reviews her cancer and treatment to date. Then the ONP vey bad news and to reassure the patient of nonabandonment.
begins her part of the discussion. o]
onp: K, I have been concerned about you. I brought you Effective communication, as viewed by terminally ill
into the hospital because you were in so much pain. I patients, their families, and health care professionals, primarily
am wondering how you are doing. consists of providing accurate information in a sensitive, sim-
kz: Well, it has been okay. But this pain is incredible. Do ple, and straightforward manner and in understandable lan-
you think you can make it better? guage. Studies indicate that patients want their physicians to be
onp: I think we can. We will have you evaluated by a team honest and straightforward as well as hopeful, and this also can
that specializes in pain control. However, I am wonder- be applied to nurses. Therefore, the nurse should encourage
ing how you are doing with your cancer? questions from the patient and be responsive to his or her
kz: Well, I know it is still there, and I would like to con- readiness to talk about death37; this can best be achieved by dis-
tinue treatment. cussing outcomes other than cure, such as improved functional
onp: When we saw you last time, we discussed that the status or independence in care needs. Focusing on quality of
common chemotherapies were not working. We dis- life offers hope and meaning to the patient, helping the patient
cussed some experimental treatment. Do you remem- prepare for losses and leaving open the possibility of mira-
ber that? cles.38 It is helpful to have a nurse present at conversations
kz: I do, and I want to continue treatment. between physician and patient at which bad news or other
onp: Do you remember when we discussed further important information is conveyed. The nurse can then rein-
chemotherapy, we also discussed functional status? I am force the information provided and promote optimal coping. If
concerned because you are hardly able to get out of bed. the nurse is not able to participate in the delivery of difcult
information, it is helpful to ask for specics about the conver- nurse: Mrs. D, I am a nurse with the pain and symptom
sation, in terms of what and how information was conveyed as team. Your physician asked that I come talk to you to
well as the patients response. This allows the nurse to follow up make sure we were keeping you comfortable. Is this an
with the patients perception of the information and his or her okay time to talk?
understanding of the next steps. mrs. d: (Nods yes)
The actual process of conducting a meeting at which impor- nurse: I dont want to increase your work of breathing
tant information is to be conveyed has seven steps9: (1) con- while we talk, so I am going to ask simple questions. To
rming medical facts and establishing an appropriately private begin with, I notice you have been in the ICU awhile. It
place and sufcient time for discussions, (2) using open-ended must be hard to be here and not at home.
questions to establish what the patient (and family) knows, mrs. d: (Nods yes and then tears up).
(3) determining how the patient wishes the information to be nurse: Is getting home really important?
presented, (4) presenting information in a straightforward mrs. d: Yes, I need to take care of my children.
manner, using understandable language, in small quantities nurse: What have the doctors told you about going home?
and with pauses for processing and questions to assess under- mrs. d: They told me I need an operation, and then I can
standing, (5) responding to emotions, (6) clarifying goals of go home.
care and treatment priorities, and (7) establishing a plan. nurse: How do you feel about that?
Quill27 emphasized the importance of these end-of-life con- mrs. d: I am scared.
versations in their early, systematic occurrence. He described nurse: What are you scared about?
how the early introduction of such conversations in the disease mrs. d: That I wont make it.
process promotes better outcomes. These outcomes include nurse: That must be hard.
more informed choices, better palliation of symptoms, and mrs. d: I am so scared. I dont know what to do.
more opportunity for resolution of important issues.27 Such nurse: How can I help you?
questions as, Are there things that would be left undone if you mrs. d: Tell me about the operation.
were to die sooner rather than later? stimulate thought and nurse: What do you know about the operation?
discussion about dying and important life closure issues such mrs. d: They said they would repair my heart.
as healing relationships and completing nancial transactions. nurse: Yes, that is true.
However, a nurse may ask this in a different way, such as, Are mrs. d: But they said it was complicated, but I dont
there things you need to do in case things do not go as well as know why. What is wrong?
we hope?39 Encouraging patients to hope for the best outcome nurse: You are right about the operation. It is very com-
while preparing for the possibility that treatment may not work plicated. Would you like me to explain it all?
is helpful in guiding the patient.40 Again, the nurse advocate mrs. d: Yes.
role facilitates the essential process of providing the patient nurse: You understand your heart is not working cor-
with all the necessary information to make choices. rectly, right?
mrs. d: (Nods yes).
nurse: But they want to x it. However, there are other
9=
parts to the operation. Did they tell you about the pro-
case study
cess of the operation?
Mrs. D, a Woman in Respiratory Distress
mrs. d: No (shaking her head).
Mrs. D, a 40-year-old woman, was in the ICU for respiratory nurse: Do you want to know?
distress. Her history included obesity, chronic obstructive pul- mrs. d: Yes. My children keep asking me.
monary disease, emphysema, and cardiomyopathy. She was nurse: Well, they will need to put you to sleep. That may
taking four inotropes to stabilize her blood pressure and mul- be hard with your breathing issues.
tiple medications for respiratory support. Her breathing was mrs. d: What else . . .
so compromised that it was difcult for her to talk for long. nurse: Then they will need to get to your heart. They
The cardiac team had offered her the surgical option of a may nd they cant repair the problem.
heart repair. She had consented, but it was very clear that she mrs. d: They didnt tell me that there was a possibility
did not understand the risks. First, she might not be able to they may not be able to x it. That is a risk.
undergo intubation, and that would preclude surgery. Second, nurse: Yes it is. Then they also need to get you back
she might be intubated and not be able to be extubated. Third, awake and off the breathing machine, which may be
anesthesia might go well, but the cardiac team might nd that difcult to do.
they could not help her. Fourth, she might die during the pro- mrs. d: So this is not an easy operation.
cedure. Fifth, even with the procedure, the inotropic and res- nurse: No, it is not. And there are no guarantees.
piratory support might not make her situation better, and she mrs. d: Oh my. I really need to reconsider all this. With
might not make it home. The palliative care team was called in what you are telling me, I could have the operation and
to see this woman. Her room was dark, and it was clear that still never get home.
she was afraid, depressed, and anxious. nurse: That is true.
mrs. d: And without the operation, I will never get home. Two recent survey studies of oncology physicians conducted
So I am in a hard spot. by Baile and colleagues are insightful. One study reported
nurse: That is correct. There is not a clear answer. Are that 22% of oncology physicians had no consistent manner
there more things you have questions about? of communicating bad news, and 51.9% used several tech-
mrs. d: No, I just want to think about this and talk it over niques or tactics without having an overall plan.43 The sec-
later. ond study revealed considerable variability in disclosing
nurse: Please feel free to write down any questions you diagnoses and prognoses, reporting the absence of further
think of, and I will come back later to answer anything curative treatments, discussing resuscitation, and making
else you need. recommendations for hospice services.44 There have been no
such surveys among nurses, but, given the lack of education
Often nurses understand that a patient is facing a choice in this area, there is a high probability that the findings
but either does not understand all the information or is being would be similar.
given an unrealistic option. Here, the nurse realizes that the Coyle and Sculco beautifully described the emotional
patient does not understand the complexities of the surgery setting of giving bad news for the clinician and the patient
and has unrealistic expectations that the surgery will cure her. (p. 212):45
She provides this information in accordance with Mrs. Ds
information preferences. Is it possible for any news, transmitted by a doctor [or
o] nurse] to a patient, to be good news in the face of
advancing disease that is not responsive to chemother-
Sometimes nurses, in their fear of communicating difcult apy? The doctor [or nurse] is in a position of having to
issues at the end of life, employ several mechanisms to avoid give information that the patient does not want to hear,
discussion. When discussing bad news, nurses and physicians and yet the patient needs to have the information in
may focus more on the biomedical aspects, and thereby avoid order to make necessary life decisions. Does it matter
eliciting and responding to patients thoughts and feelings.41 A how the information is given when medical informa-
nurse may focus only on the present time, thereby preventing tion itself can remove hope for continued existence? . . .
the patient from expressing concerns about a previous time. In a way, both partiesthe doctor and the patientare
For example, rather than listening to the patient relate con- engaged in a communication dance of vulnerability.
cerns from an earlier time, the nurse may stop the conversa- The physician is vulnerable because he/she must
tion by saying, But how are you now? Another way of deliver the facts, whatever they may be, and the patient
avoiding discussion is to change the focus or the subject. For is vulnerable because he/she doesnt want to hear any
example, if the patient says, I am nauseated, the nurse may more bad news.
nurse divert the conversation by saying, So, how is your fam- From Coyle and Sculcos perspective, patients with advanced
ily? Sometimes the nurse cuts off the conversation by offering disease generally do want to have the information. Addition-
advice: Of course, you will get over this in time. It wont last ally, both physicians and nurses can be part of this communi-
for too long. Another avoidance technique is responding to a cation dance. In a report by Yun and colleagues,46 96% of 380
patients expressed difculties by stating, Clearly you need to cancer patients and 76.9% of 280 family members stated that
talk to the social worker about your issues.31 Finally, nurses patients should be informed of a terminal illness. Not surpris-
and physicians may collude with patients in avoiding discus- ingly, some discrepancy was apparent between the opinions of
sions of death and dying.27,55 patients and those of family members regarding disclosure.
Another study of cancer patients perspectives concluded that
the most important factors when receiving bad news were the
o] expertise of the physician and being given pertinent informa-
Delivering Bad News tion about their condition and treatment options. Patients
also rated other lesser, but still important, aspects of bad news
Bad or unfavorable medical news may be dened as any news delivery related to content, setting, and supportive aspects of
that drastically and negatively alters the patients view of her or the meetings.38
his future.42 In palliative care, bad news includes, but is not lim- It should be noted that, although patients may want to have
ited to, disease diagnosis, recurrence, disease progression, lack of the information, they may be reluctant to initiate such a dis-
further curative treatments, transition to comfort care, and a cussion.47 Moreover, patients may not be actively invited to
terminal prognosis for a patients condition. Nurses, particu- express their feelings and concerns. One study showed that
larly APNs, along with their physician colleagues, generally patients not provided with an opportunity to disclose con-
have the responsibility of communicating unfavorable news to cerns before the information is provided tended to remain
a patient. The decision as to who delivers the news may depend silently preoccupied with the information and were more likely
on the relationship of the patient with the team, whom the to develop a pessimistic sense of their situation, compared
patient trusts, as well as the APNs scope of practice within the with patients who were invited to share and discuss their
institution and state practice guidelines. concerns.47
9= Behaviors used in presenting unfavorable information may

case study be grouped into four domains: (1) preparation, (2) delivering
PE, a Young Man with Metastatic Sarcoma the content of the message, (3) dealing with the responses of
the patient (and family), and (4) closing the encounter.48 Crit-
PE is a 20-year-old Spanish-speaking man with new diagnosis
ically important in the preparation for giving bad news is
of metastatic sarcoma after having had back pain for 6 months.
attention to ones own emotional stress. This may include ac-
He was brought to the emergency department, where radi-
knowledgment of possible feelings of guilt, lack of control,
ographs and computed tomography scans conrmed the diag-
failure, loss, fear, or resentment.49 Awareness of these feeling
nosis. A family meeting is called with a Spanish interpreter.
can allow for a more objective encounter and clarity in own-
apn: P, I wanted to meet today to discuss your pain and ership of issues. Nurses need to deal with their own sense of
your tests. anxiety that results from empathizing with the patient.50
pe: (Quiet) Recommended guidelines have been developed for deliver-
apn: Can you tell me how you are feeling? ing unfavorable or bad news. Based on a review of the litera-
pe: Okay. ture and a consensus panel of patients and physicians, Girgis
apn: Are you having any pain? and Sanson-Fisher51 recommended the following: (1) ensuring
pe: Some. privacy and adequate time, (2) assessing patients understand-
nurse: How much, if 1 is none and 10 is the most pain you ing, (3) providing information about diagnosis and progno-
have ever had? sis simply and honestly, (4) avoiding the use of euphemisms,
pe: A 3. (5) encouraging patients to express their feelings, (6) being
apn: And the cause of your pain, do you have any idea empathetic, (7) giving a broad but realistic time frame regard-
of that? ing prognosis, and (8) arranging review or follow-up. Other
pe: Well I hurt my back and they couldnt nd anything. points are summarized in Table 43.
apn: Well, do you remember that when you came here we Nurses perform a number of critically important functions
did more tests? That was because the pain was worse. when the patient is given bad news. First, the nurse may need to
pe: Yes. interpret, for the patient and the family, the medical informa-
apn: Well, I am afraid I have bad news about the tests. tion and jargon in a way that is understandable. Second, the
pe: (Quiet) nurse may need to restate information that the patient may not
apn: They do not look normal. We are having the experts have heard due to the emotional impact of the bad news. Third,
on x-rays and the specialists look at them. the nurse may need to investigate and support the patients
pe: (Still quiet) emotional and psychological reactions to hearing the bad news.
apn: Can you tell me what you are thinking? In response to presenting bad news, patients may express
pe: My mind is cloudy right now. I am not thinking well. comments or so-called dreaded questions, such as, Why me?,
How can you be sure? which many clinicians nd very difcult to respond to. One
apn: We did several tests that showed a possible cancer in approach is to maintain a sense of openness and curiosity,56
the pictures. In order to conrm the diagnosis, we and not to assume that one knows want the patient really
would like to take a test of some of the tissue. Would means. An acknowledgment, such as That is a tough ques-
you be okay with that? tion, allows the nurse to comment and explore further with-
pe: I want to be sure of the diagnosis, too. Cancer is bad. out feeling the need to solve or x the assumed source of the
When would you do the test? patients question or comment. This can be followed up by,
apn: Tomorrow. Is that okay? The results would take a Please tell me what you are concerned about. The nurse, by
couple of days. Then we could meet again with a cancer acknowledging and normalizing the patients feelings, invites
specialist to discuss these results. the patient to voice his or her thoughts. It also reduces the
pe: Yes. patients sense of aloneness, and by sharing the patients dis-
apn: When we meet again, who would you want to tress, reduces suffering.
be there? Another dreaded question, one that is particularly com-
pe: My family and my minister. mon when a patient has been informed of a terminal diagno-
apn: Okay, we will do the test tomorrow and meet again in sis or the lack of curative therapy, is the question, How long
3 days. I am hoping that perhaps I can give you better do I have to live? The nurse may choose to answer in several
news. But I want to prepare you that it may still be bad ways, depending on his or her comfort in these discussions.
news. In the meantime, other people are also available One response is, How long do you think you have to live?
to be of support, such as our social worker. And we will This allows the patient to voice his or her concern about time.
continue to work on getting you more comfortable. The patient may say, Not long, but I wanted to see how long
you thought, as if to compare input from different members
Here the nurse gives a warning shot of bad news but offers of the team. Another response is, Are you asking something
the follow-up meeting with test results and the specialist. specic? Here the nurse is trying to ascertain whether the
o] patient is asking about dying or is thinking of a certain event
Table 43
Main Teaching Points Regarding Delivering Bad News
1. Create a physical setting consisting of a quiet, comfortable room with all participants sitting
and free of interruptions.
2. Determine who should be present. Ask whom the patient wishes to have present and clarify
the relationship to the patient. Clarify how much the patient wants to know. Decide whether
other professionals (nurse, consultants, social worker, case manager, chaplain) should
attend, and obtain patient/family permission.
3. Clarify and clearly state your goals and the patients goals for the meeting.
4. Be knowledgeable about the patients medical condition/illness, prognosis, and
treatment options.
5. If the patient is not competent, arrange to have the legal decision-maker present.
6. If the patient or family does not speak English, use a skilled interpreter.
7. Determine what the patient and family know about the patients condition and what they
have been told.
8. Provide a brief overview of the patients course and condition as a foundation for
understanding for the entire group.
9. Speak slowly, deliberately, and clearly. Provide information in small units. Frequently ask the
patient for understanding and emotional responses.
10. Give a warning: Unfortunately, I have some bad news to share with you. Others33 have
suggested stating, I wish things were different, followed by a pause.
11. Present bad news in a concise and direct manner. Present information at the patients and
familys pace. Provide an initial overview. Assess understanding. Answer questions. Provide
the next level of detail or repeat more general information in response to the patients and
familys needs. Provide truthful, hopeful statements, but avoid false assurances.
12. Sit quietly and allow the patient and family to absorb the information. Wait for the patient
to respond. After being silent, check in with the patient such as by saying, I have just told
you some pretty serious news. Do you feel comfortable sharing your thoughts about this?
This may help the patient verbalize concerns.52
13. Listen carefully and acknowledge the patients and familys emotions, such as by reecting
on both the meaning and the affect of their responses. A study of patients perceptions to
receiving bad news (about cancer) indicated the importance, to the patient, of a comfortable
environment, adequate time for the meeting, attempts to empathize with the
patients experiences.53
14. Normalize and validate emotional responses, such as feeling numb, angry, sad, fearful. Using
the pneumonic, NURSE (name, understand, respect, support, and explore), facilitate the
sharing of emotions and reactions.54
15. Give an opportunity for questions and comments.
16. Assess thoughts of self-harm.
17. Agree on a specic follow-up plan, such as a date and time for the next meeting, while
inviting telephone contact in the interim. Treatment should be provided at the time of
closure that meets the patients immediate needs, including treatment of any distressing
symptoms. By the end of the meeting, the patient should feel supported. Conversation
addressing aloneness and referral to other resources such as support groups, counselors,
and pastoral care providers may help minimize a sense of isolation and abandonment.
that he or she wishes to live to experience. A third response is, Nonetheless, responding to and acknowledging such ques-
Why do you ask? This invites the patient to share his or her tions normalizes the discussion. It promotes further explo-
concerns about dying. Finally, if the anticipated survival time ration of thoughts and feelings, resulting in reduced suffering
is short or the nurse is uncomfortable, the reply, What has through addressing of the patients fears and concerns. The
the team told you? may be used. In this case, the patient may nurse reects on difcult information with, I imagine it is
state that the team has given a certain estimate of time, or the very frightening not knowing what will happen and when. Do
patient may be seeking validation of the prediction. you have particular fears and concerns?
After listening to the patients and family members fears and relationships and relief of burdens on others. It involves previ-
concerns, it is critically important to provide accurate, hopeful ous experience with poor health and death of family members,
information while deliberately addressing the issue of nonaban- and it occurs in the context of relationships with close loved
donment. This can be done with such words as, I wish things ones, not just with the health care system.59 As such, the nurse
were different. But no matter what, I will be there to support you has a role in advocating the implementation of the patients
in your decisions and focus on your quality of life. wishes.57
Because survival estimates affect the decisions patients
make, patients need accurate prognostic information. Inter-
o] views of 56 terminally ill patients concluded that all patients
Advanced Care Planning wanted their physicians to be honest about the prognoses con-
veyed.63 However, physicians often do poorly at estimating and
The American Nurses Association stated that nurses have a reporting accurate survival times to patients.64,65 The patients
responsibility to facilitate informed decision-making, includ- wish to hear optimistic information and the physicians reluc-
ing but not limited to advance directives.57 Studies have been tance to present information on disease progression may
performed of patients, families, physicians, and other care- impair accurate portrayal of the patients condition.55 There-
givers preferences regarding preparing for the end of life. All fore, it is very helpful for nurses to be in attendance when such
agree on the importance of (1) naming someone to make deci- information is delivered. Nurses may then attempt to temper
sions, (2) knowing what to expect about ones physical condi- some of the overly optimistic survival times, given their
tion, (3) having nancial affairs in order, (4) having treatment knowledge from working with colleagues in various other pro-
preferences in writing, and (5) knowing that ones physician is fessions. The disparity of the estimated survival times may
comfortable talking about death and dying. Patients, more confuse patients, particularly with other references such as the
than others, want to have funeral plans made and to know the Internet readily available. Discussions between patients and
timing of death. Patients were less inclined to talk about per- providers about complementary treatments is essential to pro-
sonal fears than were families, physicians, and other caregivers.58 mote realistic outcomes.66 Some of this information, including
Identied as the most important factors in achieving quality at complementary and alternative treatments, may be inaccurate,
the end of life were the relief of pain and other distressing harmful, or inapplicable when put in context of the patients
symptoms, communication with ones physician, preparation situation.
for death, and the opportunity to achieve a sense of comple- Advanced care planning discussions are best completed
tion.1 In spite of widespread agreement about the importance over time, allowing the patient opportunity for reection and
of preparation, such discussions often are not included in clin- discussion with family and friends. The process of advanced care
ical encounters.58 planning allows discussion about possible scenarios, which in
Both nurses and physicians perform advanced care plan-
ning discussions with patients and their families. Advanced
care planning involves setting goals of therapy, developing
Table 44
advanced care directives, and making decisions about specic
Questions to Begin an Advanced Care Planning
forms of medical therapy. For chronically ill, debilitated, and Conversation
terminally ill patients, advanced care planning includes mak-
ing decisions about life-sustaining therapies (code status), How can we help you live in the best way possible for you?
articial feeding and hydration, and palliative and hospice How do you wish to spend what ever time you have left?
care. Performing advanced care planning prepares for both What activities or experiences are most important for you to
incapacity and death, relieves burdens on others, solidies do to maximize the quality of your life?
relationships,59 and identies appropriate surrogates and delin- What fears or worries do you have about your illness, or
eates their authority.60,61 For the terminally ill patient, the health about medical care? Do you have other worries or fears?
care provider may begin the discussion about planning for the What do you hope for your family?
future by asking any of a number of questions, as described in
What needs or services would you like to talk about?
Table 44.
Advanced care planning may be regarded differently What do you now nd particularly challenging in your life?
depending on ones perspective. For the health care provider, Do you have religious or spiritual beliefs that are important
advanced care planning prepares for the possibility that the to you?
patient may become incapable of making decisions. Advanced What would make this time especially meaningful for you?
care planning is based on the ethical principle of autonomy What makes life worth living for you?
and exercise of patient control, focuses on completing writ- Can you image any situation in which life would not be
ten advance directive forms, and occurs in the context of worth living?62
the providerpatient relationship. For the patient, advanced How would you describe your priorities with regard to
care planning may be regarded as a mechanism to prepare for prolongation of life, maintenance of function, and comfort?52
death. Advanced care planning is a social process based on
itself may prepare the patient for the course of disease. This recommended by Harlow in Family Letter Writing,71 can be
includes potential circumstances of death and sharing of val- very helpful. Such questions include, What type of person
ues. The result may be a sense of control, a sense of trust with was the patient? Did she/he ever comment on another
health care providers, and a sense of resolution in aspects of persons situation when they were incapacitated or on life
ones life. Patients tend to express their preferences for care support? Did she/he relate those experiences to her/his own
after they understand their condition and options for therapy. personal views of her/himself? and What vignettes can you
Advanced care planning promotes the ability to evaluate such recall from his/her life that illustrate her/his values?71 In addi-
information in the context of the patients values and goals. A tion to helping to clarify a patients wishes, addressing these
change in focus from future cure-oriented treatments to goals questions may also serve as a healing review of the persons
of current living may facilitate meaning and purpose.67 Having life and help identify what has brought them meaning. The
the patient consider such questions as, What if we are not nurse is often the best person to engage the family in such
sure whether we will be able to get you off the breathing reections and discussions as they have ample opportunity to
machine? can help facilitate thought and decision about how talk during patient care.72
much chance of success a patient needs to have to make cer-
tain decisions.68 Communications About the Use
Nurses at all levels provide important assistance in helping of Life-Sustaining Therapies
patients dene their goals and wishes and express their cul-
tural and religious practices and preferences. Nurses also help One aspect of advanced care planning is often referred to as
patients clarify both emotional reactions to their clinical situ- defining the code status of the patient. In the ideal collabora-
ations and information about treatment options. Nurses play tive process, nurses and physicians are jointly involved in
a critical role in advocating for the patients wishes and prefer- these discussions. Nurses are heavily invested in clarication,
ences and communicating these to family members and other because they often are the ones who nd the patient in respi-
health care providers. ratory or cardiac arrest and must initiate a code. The nurse has
Although patients may differ in the extent to which they a 24-hour presence with the patient, including bathing and
wish to participate in treatment decisions, a number of studies being with the patient in the middle of the night and at off-
have indicated preference to take a collaborative role. Being hours; for this reason, the nurse may be the one to whom the
provided with adequate information is critical. However, sim- patient and family turn for explanations and support. The
ply being offered choices, particularly without any direction, nurse may be asked to explain what medical jargon such as
can cause a patient to feel excessively burdened and responsi- DNR/DNI actually means, particularly in the context of the
ble. The weight of these decisions can cause patients and fam- patient. The patient and family may also seek reassurance
ilies to feel a sense of self-blame or to lose condence in the from the nurse about the appropriateness of their preferences
physician, particularly if the outcome is poor. Therefore, it is and decisions or about pressure or responsibility they may feel
critically important to identify how much the patient wishes concerning the way in which information was presented and
to be involved in decision-making at all stages of disease.69 the decisions they are being asked to make. Patients may very
It is widely agreed that discussions about advanced care well ask the nurse, Do you feel I made the right decision? or
planning and completion of advance directives should occur What would you do? Patients may also need reassurance
before acute, disabling events and hopefully before the end for instance, that, by forgoing cardiopulmonary resuscitation
stage of a terminal illness. However, these conversations may (CPR), they are not denying themselves an intervention that
not occur earlier, for a number of reasons: reluctance to initi- could be benecial. They may need reassurance that the nurses
ate such discussions due to time constraints, lack of comfort will continue to provide care. By educating the patient about
with such discussions, lack of skills in such communications, the actual intervention and likely outcome, a nurse may be
and fear of upsetting the patient even though she or he may able to reassure the patient.72
wish to have the conversation. A study of patients 50 years of Code status is commonly dened as the use, or limita-
age and older who had at least one chronic, morbid medical tion of use, of life-sustaining therapy in the event of clinical
condition (ischemic heart disease, chronic heart failure, chronic deterioration of respiratory function and/or cardiac arrest.
obstructive pulmonary disease, cerebrovascular disease, can- Life-sustaining measures include nasotracheal intubation and
cer, chronic renal disease, or chronic liver disease) found that mechanically assisted ventilation and cardiac resuscitation,
greater satisfaction with the primary care physician was the combination of which is called CPR. Other measures may
expressed if advance directives were discussed during outpa- include pressors to help the heart pump more efciently and
tient visits.70 effectively, dialysis for kidney failure, and antibiotics for infec-
Nurses may be particularly helpful in advocating for tions. If a patient in a hospital or nursing home or in the com-
patients wishes and preferences when they are unable to speak munity experiences a cardiac arrest and/or respiratory failure
for themselves. The nurse, working with the surrogate, may and medical personnel are called to respond, CPR is performed
assist the surrogate to convey the patients wishes. If the surro- unless the patient, or the patients surrogate, has indicated the
gate is not certain about the patients wishes or if no advance patients desire not to be resuscitated (DNR) and/or not to be
directive is available, the nurse, by posing questions as those intubated and supported with mechanical ventilation (DNI).
When patients wishes for or against application of these med-

ical interventions or treatments are being discussed and docu- Table 45
Questions for Advance Directive Conversations
mented in the medical record, the process is often referred to as
getting the code status or discussing Do-Not-Resuscitate Normalizing comments/questions:
orders.73 Id like to talk with you about possible health care decisions
As in all other discussions with patients and their families in the future.
about preferences for care, communications about code status Id like to discuss something I discuss with all patients
should follow the same multiple-step process as described for admitted to the hospital.
communication on other topics of end-of-life care.9 In dis-
cussing a DNR order, Dr. Charles von Gunten74 recommended Inquiries of patients understanding:
the steps of (1) establishing an appropriate setting, (2) inquir- What do you understand about your current health situation?
ing of patient and family what they understand of the patients What do you understand from what the doctors have
condition, (3) nding out what the patient expects for the told you?
future, (4) discussing the DNR order with the patient in the
context of the patients understanding of present condition Inquiries to elicit hopes and expectations:
and thoughts of the future, including the context in which resus- What do you expect in the future?
citation would be considered, (5) responding to the patients Have you ever thought about how you want things to be if
emotions, and (6) developing a plan.74 Again, it is essential to you were much more ill?
place the conversation in the context of the patients wishes for
Inquiries to elicit thoughts regarding cardiopulmonary
goals of therapy.
resuscitation:
In developing appropriate goals of care for the patients
If you should die despite all our efforts, do you want us to use
condition, the patient or health care proxy must understand
heroic measures to bring you back?
the very low likelihood of survival after CPR in the presence of
terminal illness.75 Patients are less likely to opt for CPR know- How do you want things to be when you die?
ing that almost no patients with severe, multiple, chronic ill- If you were to die unexpectedly, would you want us to try to
nesses who receive CPR in hospital survive to discharge.68,76 bring you back?77
For nurses to discuss code status, there are several issues.
First, just discussing code status in and of itself is worthless.
Alone, a code status guides the health care team in deciding
whether or not to perform a procedure. Use of medical vernac- agreement from the patient and family. By saying, We would
ular, such as full code or no code and Do you want every- like to focus on comfort and maximal pain and symptom
thing done? is ambiguous at best, and offers little guidance. management. That would include medications to treat symp-
Use of language that the patient understands and review of the toms with nurses to manage these medications. We will not do
broad topic of life-sustaining treatments can guide the health any procedures that would cause more pain than benet. And
care team to a better understanding of the patients values and because we anticipate your decline, we will try to keep you
preferences about quality of life. Von Gunten77 identied the home with hospice and not to do anything to prolong your
key elements and offered particular language for such discus- dying. Is that okay? It may still be the same plan, but the fam-
sions. Table 45 lists questions that may be helpful in facilitat- ily doesnt have to make the decision. The burden of the deci-
ing communications about advance directives. sion is removed from the family and placed on the care team,
The goal of these discussions is to review the anticipated but the patient and family agree to the plan.
benets and burdens of interventions without placing any To dispel concerns of abandonment, it is particularly impor-
responsibility on the patient and family. Often the patient and tant to reassure the patient, family, and surrogate that even
family look for recommendations and validation of choices though CPR will not be performed, all benecial care will be
from the nurse. This may include queries from the patient actively provided. The nal task is to develop and document a
and family such as, What do you think? or What should I plan and share this information with other health care profes-
do? The nurse can offer the facts and reect back the patients sionals caring for the patient.77 This may be done through doc-
values and preferences such as, Mr. X, you told me you want umenting the conversation and completing state-recognized
to be comfortable and not return to the hospital. We can get comfort care/DNR order forms.
support at home to keep you comfortable and aggressively
treat any symptoms. Important elements of this discussion Conversations About Articial
include sensitivity to, acknowledgment of, and response to Hydration and Nutrition
emotions of the patient, family, and surrogate.
Sometimes, the responsibility of making such a decision is Decisions about resuscitation are just one of the many deci-
too great for patients and families. They may feel that by mak- sions that patients and families need to make regarding end-
ing a choice to refuse resuscitation, they are pulling the plug. of-life care. Both nurses and physicians discuss specic treatment
In these situations, the nurse can offer a plan and then ask for options and develop a plan of care with the patient, but it is
often the nurse who facilitates a peaceful death78 by talking care by implementing the plan of care. The APN may assist the
with the patient about his or her goals, wishes, and prefer- patient in this transition and develop orders for the treatment
ences; being cognizant of the patients suffering; and convey- plan. The nurse, together with the interdisciplinary health care
ing this information to other health care providers. team, empowers family and friends to support and care for the
When patients are not able to take food or uid by mouth, patient. The constant presence of the nurse reassures patients
articial hydration and nutrition may be provided through and families that abandonment is not an issue.
the gastrointestinal tract with a nasogastric or gastric tube or The transition from curative to palliative care is often a
intravenously. The rationale for and against these procedures challenge for clinicians, patients, and families alike. It signals
is discussed in the Chapter 12. The discussion points regarding the recognition of loss from various perspectives. Patients may
articial hydration and nutrition with the patient and/or the feel a sense of sadness, anger, denial, and loss of control to the
patients surrogate include (1) their perception of the benets disease. Physicians may feel a sense of failure for not curing the
and the suffering with or without these interventions; (2) the disease, a lack of confidence in not knowing what else they
values, beliefs, and culture of the patient and family along with can do for the patient, and perhaps worry about their own
the goals; (3) the available data regarding the benets and bur- personal reactions as well as patients emotions.48 Nurses may
dens of the interventions; and (4) collaborative decision- be frustrated if a patient is not well informed to accomplish
making about these interventions to meet the patients goals. life closure. Moreover, nurses involved in direct bedside care
Many cultures place great social and cultural importance may dread the possibility of having to provide resuscitation
on drinking and eating. Many people believe that not eating measures in such a circumstance. Nurses may dread situations
and drinking causes great physical suffering. Therefore, it is in which the primary physician, who knows the patient, is not
necessary to discuss the potential benets and burdens of insti- available, and the nurse must deal with a covering physician
tuting articial hydration and nutrition, as well as the benets who may employ inappropriately aggressive and burdensome
and burdens of withholding articial hydration and nutri- interventions because he or she has not been involved in the
tion. Nurses can stress ways of maintaining social contact patients care and does not know the patient and the family.
associated with eating and drinking. A speech and language As in other end-of-life conversations, talking about the tran-
pathologist or a swallowing therapist can assist in promoting sition to palliative care or hospice care should be guided by the
maximal safe and appropriate intake. If the patient is unable patients overall goals. As previously explained, these goals are
to take any food or fluid by mouth, providing human contact stated in terms of the relative value of prolonging life compared
on a regular basis, similar to that while feeding, may address with focusing on quality of life and comfort. In addition to
this concern. The concern of suffering or of starving the advance directives, health care proxy documentation and living
patient to death may be minimized by education regarding wills, resuscitation orders (code status), and use of other life-
dry mouth or oral discomfort. Families can be taught to pro- sustaining therapies, other important facets of end-of-life dis-
vide relief with sips of water, ice chips, and conscientious cussions include use of antibiotic therapy; use of hemodialysis;
mouth and lip care.73 management of pain and other distressing symptoms; relief of
The risks and burdens of articial hydration and nutrition psychological, emotional, spiritual, and existential suffering;
include lung congestion and increased respiratory tract secre- completion of unnished business; and anticipatory grief.27
tions, increased edema with its attendant pain at sites of tumors Strategies recommended by Larson and Tobin85 for initiat-
and inammation, more urine production, more peripheral ing end-of-life conversations during the last phase of life
swelling (particularly in the setting of liver or kidney disease), include (1) focusing on the patients unique experiences of
and skin breakdown. Feeding tubes and intravenous lines may illness, (2) helping patients confront their fears, (3) helping
be painful, carry risks of infections, and may be fraught with patients address practical issues, (4) facilitating the shift to
complications. These may include restraint of the patient to palliative care, and (5) helping the patient achieve a peaceful
prevent removal, which can cause secondary agitation and may and dignified death. This means that each situation is indi-
also result in accelerated skin breakdown from less turning in vidual and cannot be determined by an algorithm or recipe
bed. Ultimately, the use or avoidance of such interventions as approach. To facilitate such end-of-life discussions, which focus
articial hydration and/or nutrition depends on the patients on the realities of advancing illness and changing treatment
goals of care.7982 goals, Larson and Tobin propose specic questions and com-
ments, which are listed in Table 46.
Conversations about the Transition After the patient has been referred to palliative care, the
to Palliative Care or Hospice nurse may reinforce the reason for end-of-life care and the
involvement of new specialized health care providers. The focus
The hospice and palliative care movement has promoted dis- on quality of life continues in its multidimensionality deter-
cussions of the benefits and burdens of medical interven- mined by the patient. Both patients and physicians display
tions. The patient and family are helped to prepare for death reluctance to discuss psychosocial issues unless the other party
in as comfortable and meaningful a way as possible by focus- initiates the discussion.36 It behooves nurses, along with social
ing on various physical, psychological, and spiritual aspects of work colleagues, to initiate such conversations, because the evi-
care.73,83,84 The nurse has a central role in palliative and hospice dence suggests that little time is devoted to quality-of-life issues
Table 46 Table 47
Questions to Facilitate the Goals and Focus of Care in the Questions to Facility Quality-of-Life Discussions
Last Phases of Life
Which symptoms bother you the most?
Tell me about the history of your illness. How has your disease interfered with your daily activities?
What do you understand as your treatment options? How are you getting along with family and friends?
What are some of the concerns you have at this time? Have you been feeling worried, sad, or frightened about
What, if anything, are you worried about or afraid of? your illness?
Have you had family members or other loved ones die? How How have your religious or spiritual beliefs been affected by
was their death? And what was that like for you? your illness?
What practical problems is your illness creating for you? Do you question the meaning of all this?
Are there any family members or loved ones who need to
Source: Detmar et al. (2001), reference 86; Brunelli et al. (1998), reference 87.
know whats going on?
There is a lot I can do for you at this time to control your
pain, keep you comfortable, and help you live each day to the otherwise could lead to a sense of hopelessness in the patient.
fullest extent that you can.85 These strategies include explaining what to expect regarding
Given the severity of your illness, what is most important for the patients decline and the patients involvement in decision-
you to achieve? making, as well as encouraging relationships and connections
How do you think about balancing quality of life with length with important people.90 Such discussions lend themselves to
of life in terms of your treatment? strategies for life closure in identifying patient goals and pur-
What are your most important hopes? poses, preparation for death, leaving a legacy for loved ones,
What are your biggest fears? and often legal and nancial issues. Completing these tasks
frees the patient to concentrate on emotional and spiritual
What makes life most worth living for you?
matters and to enjoy the company of loved ones.32
Would there be any circumstances under which you would
nd life not worth living?
Communications as the Patient Is Dying
What do you consider your quality of life to be like now?
Have you seen or been with someone who had a particularly When curing is no longer viable and this message is
good death or particularly difcult death? communicated to or intuited by the patient, a pregnant
Have you given any thought to what kinds of treatment you moment for healing arises for both physician and
would want(and not want) if you become unable to speak for patient. The focus and ght for life can give way to a new
yourself in the future? alliance based on sharing the inevitability of the human
If you were to die sooner rather than later, what would be contract. . . . The smallest, most humble act of a change
left undone? to more generic reaching out can have exponential bene-
How is your family handling your illness? What are t to the patients subjective sense of well-being.91
their reactions?
Nurses communications with the patient and family, when
Are there any spiritual issues you are concerned about at death becomes inevitable, may facilitate comfort and healing in
this point?
a number of ways. Using patient wishes to review treatment
Has religion been an important part of your life?27 options, advanced care planning issues, and use of life-sustaining
measures, nurses can promote comfort in a patients nal days.
Treatment issues include pain management while respecting a
during outpatient palliative care visits.86 Table 47 lists open-
patients preferences for pain alleviation versus desired level of
ended questions that may help facilitate quality-of-life discus-
alertness, and addressing eating, drinking, and articial hydra-
sions with patients.86,87
tion and nutrition. The nurse should review the actual physio-
Von Gunten77,88,89 recommended a step-wise approach of
logical and biological process of dying in language that also
establishing the setting, eliciting the patients understanding of
addresses the benets and burdens of various interventions.
their condition and their expectations for the future, discussing
This includes discussions with the patient, family, and other
what hospice care is, responding to emotions, and developing a
health care professionals about withdrawing ineffective and/or
plan. Conducting a family meeting to respond to patient and
burdensome medical treatments that may not yet have been
family concerns, to discuss the patients wishes with other fam-
discontinued. Simple presence, listening, and attending to the
ily members and health care professionals, to have the hospice
basic humanity of the dying patient may be one of the nurses
team provide information, and to collaboratively develop a
most powerful contributions.
plan may serve to help communicate what hospice care is.77,88,89
A number of strategies may be used to address feelings The simple act of visitation, of presence, of taking the
of powerlessness, uncertainty, isolation, and helplessness that trouble to witness the patients process can be in itself
a potent healing afrmationa sacramental gesture their loss, including details of the days and weeks around
received by the dying person who may be feeling help- the death of their loved one; encouraging the sharing of mem-
less, diminished, and fearful that they have little to offer ories of the person; asking about how things are different
others. The patient may also fear that he or she has now; and helping to identify sources of support, of coping, and
failed. . . . I and many dying persons would agree that of accomplishing practical daily activities may be of great
beyond pain control, the three elements we most need assistance.92
are feeling cared about, being respected, and enjoying a
sense of continuity, be it in relationships or in terms of Family Communication
spiritual awareness.91
In 1995, Zerwekh93 suggested a family hospice caregiving model
The communication skills required include being present whereby communication, in particular the nurses communi-
with the patient in his or her state of vulnerability and decline, cation, sets the tone for all care. In this model, the role of the
and consciously and nonjudgmentally listening and bearing nurse is to help guide the care. Speaking the truth enables the
witness to the patient, encouraging the patient to express all nurse to connect with family members and empower them to
feelings while resisting defensiveness if the patient voices anger make choices, but also to be collaborative, to comfort, to guide
or disappointment about dying. the dying process, and to provide spiritual support.
The willingness to extend to the patient with freshness, Nurses, by the nature of their practice, understand that
innocence, and sincere concern far outweighs any the focus of care is on patients and their families. Because the
technique or expertise in the art of listening. Practice essence of nursing is to care for actual and potential health
and exposure hone these skills and deepen ones problems of the patient and family, the scope of care is broad.
personal awareness, which in itself is the fertile soil for Challenges arise when the patient and the family are in con-
end-of-life completion work for both parties.91 ict. In these times of nursing shortages, interference from
family members at the bedside may overwhelm the nurse in
Nurses, by communicating physical and behavioral signs her best efforts to provide care for the patient.
of the dying process, may help prepare patients and families Within the spectrum of the patients illness, the family has
and thereby reduce anxiety and ease the bereavement process. various communication needs. First of all, because of caregiv-
Nurses, in response to patients desires to appreciate the pur- ing demands, family members feel a part of the illness.19 There-
pose and meaning in their lives as they face death, may use fore, they want to be included in any communication pertaining
interventions to help relieve spiritual suffering. Being present to disease progression, treatment options, and goals of care.
with the patient and encouraging a life review by recalling and Additionally, family members, because of their knowledge of
talking about memories and past conicts may help patients the patient, may serve as the best advocates for their ill family
and loved ones to recognize purpose, value, and meaning. Per- member.19 This is well illustrated in pediatrics, where parents
forming a life review also helps patients achieve resolution of are considered to be the experts on their children. Family mem-
past conicts, forgiveness, reconciliation, a sense of personal bers carry the burden of caregivingan exhausting task that
integration, and inner peace. Goals may be reframed into short- may include scheduling appointments related to care, arrang-
term activities that can be accomplished. Meditation, guided ing transportation for these appointments, attending to the ill
imagery, music, reading, and art that focuses on healing may person, and providing direct care.19
be comforting.24 One challenge for the nurse is to decipher the patients
Role modeling the art of being present to the dying person important relationships and determine who should get what
for families is important. Engaging in loving, physical contact, information. Another challenge is to help family members
such as holding hands, embracing, or lying next to the patient, with the issues of caregiving. The very logistics of caregiving
may help the patient in his or her transition and may help the can be overwhelming with respect to demands of time and
survivors in their anticipatory grieving. For families who want energy. Families need assistance in rallying support to care
to be present at the time of death, explaining that patients for loved ones and to identify and access community ser-
often wait until they are alone to die may prevent the family vices. Additionally, families need support in dealing with the
from feeling a sense of guilt if they are away from the patient at emotional burden of caring for the loved one alone while at
the time of death. Allowing the family to be with the patient the same time dealing with other aspects of their own lives,
after death may help the surviving family members grieve the demands that may include a full or part-time job and nancial
loss of their loved one. stresses. For some families, it may be necessary to continue
Nurses awareness of anticipatory grief and bereavement working in order to maintain insurance coverage. Families
and communications with family members and other loved may need to hire extra help that is considered custodial and
ones may help them through these painful times. Bereaved is not covered by insurance. Moreover, lack of education
families are often in most need of having someone to listen to about providing direct care may create a tremendous sense of
them. One of the nurses most important roles in working inadequacy in the caregiver. Families often need education
with grieving patients and bereaved families is active, compas- in aspects of physical caregiving, including transfers and per-
sionate listening. Encouraging the bereaved to tell stories of sonal care.94
Moreover, there may be a number of challenges within the

family itself related to family functioning, coping strategies, Table 48
Questions to Address Patients and Families Coping
and processes of communication.95 In an attempt to negotiate
the health care system and advocate for a loved one, a family Have you/your family been through something like this
member can intentionally or unintentionally create havoc by before? How did you/your family react/cope?
rejecting assistance or accepting too much help. In an attempt Do you have a belief in a higher power that supports you?
to seek a cure at all costs, too many health care providers may Is there anyone youd like us to call?
be consulted for a case. This can be a set-up for failure due to
Can you anticipate any potential areas of concern for you and
splitting or absence of a lead person to make decisions. Family
your family?
members, intentionally or unintentionally, may work at cross-
Who could you call if you started to feel really sad?
purposes or cause health team members to work at cross-
purposes. This may serve to undermine care and to prevent Did the patient ever tell you what he/she wanted for
addressing important aspects of terminal care. However, there himself/herself?
may be clear informational issues that need to be addressed. To Is there anyone you think the patient would like to see?
successfully ascertain the situation, the nurse needs to know Who can support you when the patient dies?
about the communication style of the family. Duhamel and
Dupuis96 offered the following questions: Source: Braveman et al. (2003), reference 98.
What is helping you the most?

Where are you getting support?
What information do you need right now? Communication with family members is as important as
communication with the patient. The family may not under-
Other challenges for the nurse are a mismatch of patient
stand as much as the patient does, or the family may under-
and family needs for information and communication and dif-
stand more than the patient. The familys questions and
ferences in coping styles. A patient may need little communi-
comments may focus on their coping and coming to terms
cation, whereas certain family members may need constant
with the patients potential death. Sometimes, a nurse needs
updates, partially because they are unable to attend appoint-
to interact with many family members, which can be exhaust-
ments with the patient. In other settings, a patient may have a
ing and can ultimately require one family member to serve as
need to communicate but the family member is comfortable
the spokesperson. This work is very labor intensive, because
being quiet. Being at different places in coping may also create
different family members have varying needs for informa-
tension between a patient and his or her family. A patient may
tion and reassurance. Nevertheless, this communication is
be coping well and adjusting to the physical changes, whereas a
essential, because the nurse may coach the family as to how
family member may just be beginning to deal with the diagno-
to communicate effectively and compassionately with the
sis of a life-threatening illness and not be able to even concep-
patient.
tualize a prognosis. On the other hand, a patient may be too
overwhelmed by symptoms to deal with psychological aspects
of care, whereas a family member may be more objective. 9=
To best work with families, the nurse can use several strate- case study
gies. First, frequent interaction with family members can help Mr. T, an Elderly Man with Complications After a Fall
the family feel included and not avoided. Second, understand-
Mr. T is an 85-year-old man who was living without family and
ing of the familys communication styles can help in these
was ercely independent. One day, he fell down the ight of
interactions. As part of the nursing assessment, a determina-
stairs in his house. He crawled back up to bed. Three days later,
tion of the familys understanding of the patients condition
he tried to move and could not. He called 911 and was brought
helps facilitate communication. In collaboration with the
to the hospital by emergency responders. There he underwent
patient, the nurse can clarify the familys roles and responsi-
spinal cord surgery and then spinal fusion. During his recovery
bilities and support their efforts and sacrices as caregivers.
from surgery, he suffered a stroke. He was treated with heparin
This is critically important when working in partnership
and then suffered an intracranial bleed. He is now limited to
with patients and their families.97 The nurse may also be of
movement in only his left upper extremity. Mr. T is awake and
great assistance to the family in helping them with anticipa-
alert, but is nonverbal and does not follow commands. His sis-
tory grieving and bereavement. Eliciting the coping mecha-
ter, Mrs. O, is distraught over his care. A meeting is held with
nisms of the patient and family is an important part of patient
the neurosurgeon and the palliative care nurse.
assessment, as the patient transitions in care and later pro-
gresses to dying, and also of family assessment during these nurse: Mrs. O, I am the palliative care nurse. I was asked
times and during bereavement. Particular questions may help by Dr. Q and Dr. P to help out with your brothers care.
clinicians and other members of the palliative care and hos- We decided it would be best to meet with you together
pice teams address and support patients and families coping to gure out a plan of care.
mechanisms (Table 48). mrs. o: Dr. P , please tell me if my brother will get better.
dr. p: Well your brother suffered major injury to the nurse: No, there are some considerations about his treat-
spine when he fell. He was brought here, and we tried ment you can make. First of all, he has been in bed a
to x his spinal cord so that he would be able to move. long time. He is deconditioned and he could get pneu-
We were somewhat successful in giving him a little monia. You can decide not to treat that.
movement. However, then he suffered a stroke. The mrs. o: I can?
neurologists have treated him and believe that this nurse: Yes. You can also decide that if he has any other
is the best he will get. As you can see, he is alert events, such as if his heart or his breathing stops, he
and awake. would not undergo shock to restart his heart or be put
mrs. o: But he doesnt seem to understand anything and on a breathing machine.
he cant talk to me. mrs. o: I denitely dont want him put on any machines
dr. p: Well, he seems to enjoy watching TV and could do to keep him alive.
well with some rehabilitation. However, he will proba- nurse: You can also decide that you dont want to give
bly never be able to live alone again. him articial nutrition and hydration. Instead, he can
mrs. o: What do you expect from rehabilitation? eat what he can with the assistance of other people.
dr. p: He may gain a little strength and some vocalization. And we could keep his mouth and lips moist so he
But he will never be able to move more than his arm. doesnt feel thirsty. He could still taste food, but we
mrs. o: So this is the best he will get? would let him enjoy eating while knowing he may get
dr. p: Yes, we managed to save him. Although, he wont be pneumonia. Is that something you would consider?
able to do much, he can get satisfaction from being mrs. o: Yes. My brother would have hated all this. I just
with people and watching TV. want to let nature take its course, but not see him suffer.
mrs. o: But he was very independent and never wanted nurse: Then we will not do any aggressive life-
any help. In addition, he always told me he would never prolonging treatment. Instead, we will focus on his
want to go into a nursing home. He thought that was a comfort and quality of life. Only if he seems
horrible way to live, and he said it every time we passed uncomfortableis restless, agitated, or in painwould
a nursing home. we use medicines to help him be comfortable. Does
dr. p: But he could still get a little better with some reha- that seem like the right plan for him?
bilitation. mrs. o: Oh yes. Thank you so much. My brother would
mrs. o: For what, to be like that? That is no quality of life. be so relieved to know all this. I just cant go against his
What choices does he have? character.
dr. p: Well, if you dont want rehabilitation for him, you
Here the nurse allows the family member to describe her
could have the palliative care service start a morphine
loved one. This facilitates the decision-making by the sister on
drip. (He then leaves)
her brothers behalf.
mrs. o: Is that what you do?
o]
nurse: No, we focus on the preferences of the patient and
the family. Tell me about your brother and what he Often, family communication is best done within a family
was like. meeting, a wonderful but greatly underutilized tool. Most cli-
mrs. o: Well he lived alone all his live. He loved my sons nicians, with the exception of social workers, have not been
like his own. He taught them woodworking. They taught how to effectively run a family meeting. Family meet-
would go up and see him once a week to check up on ings help the family understand the involvement of various
him and make sure he had enough food. We asked him health care providers, the disease process, and options of care.
to live with us, but he would have none of it. They also reassure families that a plan is in place and everyone
nurse: What are your thoughts about his care? is working toward a consistent goal. The family meeting also
mrs. o: He would never want to be like this. If he could provides clinicians an opportunity to collaboratively formu-
look at himself, he would die from embarrassment. He late a plan of care that is consistent with the goals and wishes
hated TV. Having only the quality of life to watch TV of the patient and family.
would be awful for him. He was a doer. He never sat Before calling a family meeting, it is important to clarify the
for long. goal for the meeting, to maximize the effective use of time. This
nurse: So you are thinking this would not be the type of can range simply from an update of care to discussing with-
life he would want? drawal of technological interventions. Consideration should be
mrs. o: No. It seems like getting him rehabilitation would given to the attendance of key and central health care providers,
serve no purpose. But I dont want to kill him. You who should meet at least a few minutes before the meeting to
wouldnt do that, would you? clarify the messages to be conveyed. For more complex or con-
nurse: No, we only treat a patients symptoms. He does tentious families, having a meeting specically to plan strate-
not seem to have any physical pain or distress. gies to deal with a difcult family is time well spent.
mrs. o: Then I just have to wait for him to die? Where The actual family meeting is fairly easy and is based on
will he go? common sense. The patient may or may not attend depending
on his or her condition, decision-making capacity, and prefer-

ence for involvement. One person should take the lead, ensur- Table 49
The Family Meeting
ing that everyone in the room is introduced, and review of the
goal of the meeting. Often the family has not met various Calling a Family Meeting
providers, even if the patient has, and not all health care 1. Clarify goals of meeting
providers know each other. At that point, depending on what
2. Decide the appropriate people to attendpatient, family,
the team has decided ahead of time, another person may ask and health care providers
for the familys understanding of the patients current condi-
3. Providers should meet beforehand to ensure consistency
tion. This speaker may offer a summary of the care. The next
of message and process
part of the meeting addresses questions and issues that require
clarication. It is helpful to have the health care team present The Actual Meeting
to hear the concerns and clarify issues in their areas of expert- 4. Arrange appropriate setting
ise. After this discussion, the lead person can summarize the 5. Introductions of everyone in room and their relationships
issues and collaboratively develop a plan of care. If the family to patient
agrees to the plan, the meeting can end with a synopsis of the
6. Review goal of meeting
meeting and the decisions made. If the family disagrees,
7. Elicit patient/family understanding of care to date
another meeting can be suggested. One of the most important
tasks after the meeting is documentation. The names and titles 8. Review current medical condition
of the people who attended, the issues discussed, and the deci- 9. Questions
sions made should be documented in the medical record, as 10. Options for care
outlined in Table 49. 11. Elicit response from patient if decisional
12. Elicit response from family in terms of what patient
would choose if she/he could
o]
Team Communication Summary
13. Review plan
It is commonly agreed that palliative care is best delivered in If agreementthen decision
an interdisciplinary fashion. The underlying reasoning is that
If no agreementwhat follow-up is planned
well-functioning interdisciplinary teams can share responsi-
14. Document meetingwho attended, what was discussed,
bility for care, are able to balance multiple perspectives in care,
and plan
can support each other in the provision of care, and can pro-
vide more comprehensive care, compared with a sole individ- Source: Adapted from Rabow et al. (2004), reference 94; Quill &
ual clinician.99 More simply put, a team is more capable of Townsend (1991), reference 49; and Buckman (2001), reference 2.
achieving better results than are individuals working in isola-
tion.100 Good teams promote the establishment of effective
communication, cooperation, and competence.15 The essential appropriate supporting evidence. If the contact is about infor-
elements that make effective and efcient teams include coordi- mation sharing, the nurse should be brief. If a treatment
nation of services, shared responsibility, and, not surprisingly, change is warranted, the nurse should have the supporting
good communication.101 evidence. For example, if calling about pain and symptoms,
The diversity that gives the interdisciplinary team its effec- the nurse should know the medications the patient is taking,
tiveness is dependent on good communication among its when they were last taken, and the patients pain scores, and
members.102 Witnessing good communication among health should offer a suggested plan. Without this information, it can
care professionals is also reassuring to patients and their be frustrating for physicians to offer any treatment changes.
families.103 A struggle often occurs because much of palliative care is
Nurses must work closely with physicians at various levels, care that nurses have historically provided. Indeed, the central
depending on their role and practice.104 Nurses nd that work- caregiver in hospice is the nurse. In palliative care, the more
ing in different environments dictate interactions with physi- academic aspect of end-of-life care, physicians now are taking
cians that may be characterized by deference or by true on many aspects of the nursing role. Because of the interde-
collaboration. Communication skills with colleagues vary pendence of the members of the team, interdisciplinary roles
from those used with patients; mutual respect and under- may become blurred. This can result in a favorable collabora-
standing, rather than hierarchy, lead to the best results. How- tion, but it may also result in tension and competition among
ever, nurses and physicians may differ in their communication members of the interprofessional team. Tension may exist due
styles. Whereas physicians often want facts and numbers, to the fact that much of palliative care is still the 24-hour care
nurses often emphasize process, leading to conict in informa- provided by the bedside nurse.105 Therefore, it is important to
tion styles. It is best if nurses are clear about the purpose of any work out the conicts and to recognize the role of each team
communication, and it is important for them to have the member in the care of the patient.
Understandably, there can be some darker sides of team In summary, interdisciplinary teams have much to offer
interactions. According to Kane,106 stress and tension can patients and families. Together, the various disciplines can
arise from ethical conicts among team members and con- meet the needs of the whole person.107 However, teams have
icting goals regarding patient care. Eight problems may their own dynamics, just as a family does, because they are, in
occur within a team: (1) overwhelming the patient, (2) mak- effect, social systems. With good leadership, role delineation,
ing the patient part of the team, (3) squelching of individual and exibility, interdisciplinary teams work well, creating a
team members, (4) lack of accountability, (5) team process synergy that promotes positive outcomes.107 There are inher-
trumping client outcome, (6) orthodoxy and groupthink, ent issues that may make teams less helpful if they do not take
(7) overemphasis on health and safety goals, and (8) squan- the time to reect on their process. To look at its effectiveness,
dering of resources. All of these issues can occur at various a team needs to assess its process. First, the participation of all
times within the palliative care team and necessitate good members is essential; the degree of involvement may depend
communication and conict resolution. Examples of these on the issues of the patient and family. Second, each team
problems include the following: member should have a voice in the process. Third, the mission
and goals should be a periodically reviewed so that all mem-
1. Overwhelming the patientThis occurs often at a bers are working on the same premise. Finally, each team
family meeting, where there may be the patient, one member should understand his or her role in patient care and
family member, and many health care professionals. maintain the process of the group. With a periodic review of
The patient or family may feel outnumbered and these issues, the group will work more effectively and ef-
hesitant to talk about the goals of care. ciently as a team. Reection helps a team mature, avoiding
2. Making the client part of the teamPatients are some of the pitfalls of teamwork.
told that they are part of the decision-making team
and are asked for input. However, the fact is that
patients who are dying may not have the energy to o]
advocate for themselves. Rather, they want other Conict Resolution
people to advocate for them.
3. Squelching of individual team membersThe team Conict is a situation in which the concerns of two or more
may explicitly say that everyones input is equal people or parties appear to clash.108 This may occur between a
when implicitly that is not the case. Nonphysician patient and a nurse, between a nurse and a doctor, or between
voices may be dismissed. The nurse must often work two health care teams. Conict is inevitable and healthy. If
hard to be heard. managed well, it helps people look at different perspectives
4. Lack of accountabilityThis is often a challenge and can allow for creativity and positive movement. If dismissed
when there is a primary team working with other or ignored, it can breed decreased productivity, decreased
consultants such as palliative care teams. The team quality and commitment, and negativity. Nurses on the front
is consulted to do a certain thing. There can be ten- line deal with conict all the time. The challenge is to recog-
sion if they see other things that should be done but nize the conict and the nature of the conict. Often, two
they have not been asked to address these issues. teams have different ideas, and the nurse is caught in the mid-
5. Team process trumping client outcomeOften, in dle. In this situation, it is best if the nurse expresses the need
providing end-of-life care, health care providers for the teams to talk to each other. Sometimes, patients and
have certain ideas or feelings about what is right or families split staff. Here it is best if the team speaks with con-
wrong. The challenge is to allow an open process to sistency and frequency.
occur and not to limit it to one particular pathway There are several methods to resolve conflict between
simply because that is the way it is always done. team members, or between a colleague and a patient. The two
6. Orthodoxy and groupthinkA group can become extremes are conict avoidance and continued conict. Between
insular and not incorporate new ideas. The team the extremes on this spectrum are negotiation, accommo-
becomes unable to assess itself, and obvious prob- dation, and collaboration. What differentiates these processes
lems are overlooked. In end-of-life situations, this is the perceived power differences. Nurses, depending on their
often happens in relation to the dying process. level of practice, practice site, and experience, may deal with
Nurses may see that the patient is dying, but other conflict differently. Even within nursing, there may be ten-
health professionals look for a specic symptom sion between generalists and APNs. Historically, an imbal-
and treat it. The fact that the patient is dying ance of power has existed between attending physicians and
is overlooked. nurses. However, with social work colleagues, nurses have felt
7. Overemphasis on health and safety goalsThe care equal, with a balanced or similar power. Often, nurses avoid
plan takes over, in preference to the patients needs. conflict if they constantly have difficulty dealing with a team
8. Squandering of resourcesNeeds of patients member who will not talk about disagreements. However, in
are missed, and high-cost interventions are palliative care, the goal should be collaboration in which all
implemented. problems are discussed and mutual solutions are reached. In
order to best solve conflict, there are several strategies. Com- partys version of the events. Finally, the two parties problem
mon issues of team conflict include information, common solve and decide on a tack of resolution.109,110
goals, values, role expectations, and differences in underlying
values.101
Conict resolution occurs through a process (Table 410). o]
First, the nurse identies the source of the conict. This Achieving Expertise in Communication
includes reviewing the conict in terms of what happened,
what the impact was, and what emotions contributed to the Achieving expertise in communication requires a long-term
conict. Second, the nurse reects on the goal of conict reso- commitment. First, a nurse must assess her own strengths and
lution in terms of what she or he hopes to accomplish. Then weaknesses in communication, and specically in the area of
the nurse addresses the conict. In doing so, the two parties death and dying. Completing a death awareness questionnaire
share their common purposes and differing interests. This helps identify areas of comfort and discomfort regarding dis-
leads to exploration of the conict and letting each party tell cussions of death and dying. Often, it is helpful for the nurse to
his or her perspective while acknowledging feelings and each ask colleagues to observe how he or she talks with patients and
to give honest feedback. It may also be helpful to spend some
time with hospice and palliative nurses who can discuss more
Table 410 about the communication process. Reection of a nurses own
Approaches to Effective Conict Negotiation areas of strength and style of communication is helpful,
because language and words are individual to ones experience
Reection of the conict
and practice. It is also helpful to have a place to develop and
1. Identify source of conict acquire skills. This may occur in a formal preceptorship, for-
What happened? mal education, or mentoring with expert nurse colleagues.
What emotions contributed to conict? Sometimes, this can be done by writing a narrative about a dif-
What impact has the situation had on you? cult case, doing a case review, or participating in peer super-
vision of all cases of patients with life-threatening illnesses.
What did you contribute to the problem?
2. Identify the goal of conict resolution
What do you hope to accomplish?
o]
What is best way to raise issue? Conclusion
Whats at stake for you?
Communication is the cornerstone of end-of-life care. Good
Negotiation of the conict
communication sets the trust and the tone for all aspects
3. Address the conict of care. Effective communication allows patients to paint a
When and how is the best way to raise the issue and picture of themselves and their priorities, values, and needs in
achieve the purpose? the last stages of life. Communication facilitates the expression
4. Identify each individuals purpose in conict resolution of feelings by the patient and family members, including their
Where do the individuals share purposes? sense of issues and problems surrounding a life-threatening
Where do the individuals interests differ? disease and their concerns about care.
Properly developed and used, communication holds all
5. Explore the conict
the essentials of end-of-life care together. If it is improperly
Listen to other individual and explore the story
used, the care and care plan of the patient can fall apart. Nurses,
Acknowledge feelings behind story and paraphrase them by the virtue of their close proximity to patients, have the
Ask other individual to listen to you as you share your potential to participate in myriad communications with their
version of events and your intentions patients. It is incumbent on nurses to acquire the skills neces-
6. Problem solving sary to make their communications effective.
Invent options to meet each sides most important
concerns and interests
Decide tack of resolutionavoidance, collaboration, references
compromise
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II
Symptom Assessment
and Management
o]
5o] Regina Fink and Rose Gates
Pain Assessment
Painhas an Element of Blank
It cannot recollect
When it beganor if there were
A time when it was not
It has no Futurebut itself

Its Innite realms contain
Its Pastenlightened to perceive
New Periodsof Pain.
Emily Dickinson, 19551
Key Points Pain is a common companion of birth, growth, death, and ill-
Pain is multifactorial and affects the whole person. ness; it is intertwined intimately with the very nature of
Pain prevalence at the end of life is high and can be acute, chronic, human existence. Most pain can be palliated, and patients can
or both. be relatively pain free. To successfully relieve pain and suffer-
Patients or residents should be asked whether they have pain ing, accurate and continuous pain assessment is mandatory.
(screened for pain) on admission to a hospital, clinic, nursing However, evidence demonstrates that pain is undertreated in
home, hospice, or home care agency. the palliative care setting, contributing signicantly to patient
If pain or discomfort is reported, a comprehensive pain assessment discomfort and suffering at the end of life. Studies suggest that
should be performed at regular intervals, whenever there is a as many as 30% of newly diagnosed cancer patients, 40% of
change in the pain, after analgesic administration, and after any those undergoing treatment, and 75% of those in the terminal
modications in the pain management plan. phase of disease have unrelieved pain.29 One study reported
The patients self-report of pain is the gold standard, even for those that more than 50% of cancer patients have increased suffering
patients who are nonverbal or cognitively impaired. requiring sedation in the last days of life.9 Coyle and col-
Standard pain scales should be used in combination with clinical leagues10 reported that 100% of their patients had pain and
observation and information from health care professionals and 37% had increased opioid requirements of 25% or more dur-
family caregivers. ing the last month of life. In the Palliative Care Consultation
Multiple barriers to pain assessment exist. Service at the Medical College of Wisconsin, pain and end-of-
life decisions were the most frequent reasons for consulta-
tion.11 Although nursing homes are increasingly becoming the
most common site of death for the elderly,12,13 pain relief in
long-term care facilities varies widely, with 45% to 80% of
residents having substantial pain with suboptimal pain man-
agement.1420
This chapter considers various types of pain, describes
barriers to optimal pain assessment, and reviews current clini-
cal practice guidelines for the assessment of pain in the pallia-
tive care setting. A multifactorial model for pain assessment is
proposed, and a variety of instruments and methods that can
be used to assess pain in patients at the end of life are discussed.
o]
Types of Pain
According to the International Association for the Study of

Pain (IASP), pain is dened as an unpleasant sensory or emo-
tional experience associated with tissue damage. The inability
97
98 Symptom Assessment and Management
to communicate verbally does not negate the possibility that cornerstone of optimal pain management, studies of nurses
an individual is experiencing pain and is in need of appropri- and other health care professionals continue to demonstrate
ate pain-relieving treatment.21 Pain has also been clinically the contribution of suboptimal assessment and documenta-
dened as whatever the experiencing person says it is, existing tion to the problem of inadequate pain management.2,2427
whenever the experiencing person says it does.22 Multiple barriers to the achievement of optimal pain assess-
Pain is commonly described in terms of categorization ment and management have been identied (Table 51).25,2935
along a continuum of duration. Acute pain is usually associ- The knowledge and attitudes of health care professionals toward
ated with tissue damage, inammation, a disease process that pain assessment are extremely important, because these factors
is relatively brief, or a surgical procedure. Regardless of its inuence the priority placed on pain treatment.36
intensity, acute pain is of relatively brief duration: hours, days, Recognition of the widespread inadequacy of pain assess-
weeks, or a few months.23 Acute pain serves as a warning that ment and management has prompted corrective efforts within
something is wrong and is generally viewed as a time-limited many health care disciplines, including nursing, medicine, phar-
experience. In contrast, chronic or persistent pain worsens macy, and pain management organizations. Representatives
and intensies with the passage of time, lasts for an extended
period (months, years, or a lifetime), and adversely affects
the patients function or well-being.24 Chronic pain has been Table 51
further subclassied into chronic malignant and chronic Barriers to Optimal Pain Assessment
nonmalignant pain. Chronic pain may accompany a disease
process such as cancer, human immunodeciency virus Health care professional barriers
(HIV) infection and acquired immune deciency syndrome Lack of identication of pain assessment and relief as
(AIDS), arthritis or degenerative joint disease, osteoporosis, a priority in patient care
chronic obstructive pulmonary disease, neurological disorders Inadequate knowledge about how to perform a
(e.g., multiple sclerosis, cerebrovascular disease), bromyalgia, pain assessment
sickle cell disease, cystic brosis, and diabetes. It may also be Perceived lack of time to conduct a pain assessment
associated with an injury that has not resolved within an Failure to use validated pain measurement tools
expected period of time, such as low back pain, trauma, spinal Inability of clinician to empathize or establish rapport
cord injury, reex sympathetic dystrophy, or phantom limb with patient
pain.
Prejudice and bias in dealing with patients
Additionally, the American Geriatric Society (AGS) Panel
on Persistent Pain in Older Persons18 has classied persistent Health care system barriers
pain in pathophysiological terms that assist the health care A system that fails to hold health care professionals
professional to determine the cause of pain and select the accountable for pain assessment
appropriate pain management interventions. The four pain sub- Lack of criteria or availability of instruments for pain
categories that have been delineated are nociceptive pain (vis- assessment in health care settings
ceral or somatic pain resulting from stimulation of pain Lack of institutional policies for performance and
receptors), neuropathic pain (pain caused by peripheral or cen- documentation of pain assessment
tral nervous system stimulation), mixed or unspecied pain
(having mixed or unknown pain mechanisms), and pain due to Patient/family/societal barriers
psychological disorders. The highly subjective and personal nature of the
pain experience
Lack of patient and family awareness about the importance of
o] pain assessment
Barriers to Optimal Pain Assessment Lack of patient communication with health care professionals
about pain
Inadequate pain control is not the result of a lack of scientic Patient reluctance to report pain
information. Over the last two decades, a plethora of research
Patient not wanting to bother staff
has generated knowledge about pain and its management.
Patient fears of not being believed
Reports that document the inability or unwillingness of health
care professionals to use knowledge from research and advances Patient age-related stoicism
in technology continue to appear in the nursing and medical Patient not reporting pain because nothing helps
literature. The armamentarium of knowledge is available to Patient concern that curative therapy might be curtailed
assist professionals in the successful assessment and manage- with pain and palliative care
ment of pain; the problems lie in its misuse or lack of use. Lack of a common language to describe pain
Undertreatment of pain often results from clinicians failure or Presence of unfounded beliefs and myths about pain and
inability to evaluate or appreciate the severity of the patients its treatment
problem. Although accurate and timely pain assessment is the
Pain Assessment 99
from various health care professional groups have convened to regimens. Therefore, the prevalence of inadequate pain
develop clinical practice guidelines and quality assurance stan- assessment and management may be even greater than
dards for the assessment and management of acute, cancer, reported, because more persons may be suffering silently in
and end-of-life pain.5,6,18,19,3742 The establishment of a formal their homes. An adequate pain assessment may not have
monitoring program to evaluate the efcacy of pain assess- been done or documented. Health care professionals may
ment and interventions has been encouraged. The Agency for not believe patients reports of pain and may not take time to
Health Care Policy and Research (AHCPR) Acute and Cancer communicate, care, or understand the meaning of the pain
Pain Practice Guidelines, The American Pain Society (APS) experience for the patient. With the influences and increas-
Quality Assurance Standards, The Oncology Nursing Society ing demands of managed care and changes in the delivery of
(ONS) Position Paper on Cancer Pain Management, the APS health care, pain assessment and management may not be
Position Statement on Treatment of Pain at the End of Life, a priority.
the AGS Panel on Persistent Pain in Older Persons, the Ameri-
can Medical Directors Association (AMDA) Pain Guidelines,
APS Guidelines for the Management of Cancer Pain in Adults o]
and Children, and the National Comprehensive Cancer Net- Process of Pain Assessment
work (NCCN) Guidelines are reective of the national trend
to assess quality of care in high-incidence patients by moni- Accurate pain assessment is the basis of pain treatment; it is a
toring outcomes as well as assessing and managing pain. The continuous process that encompasses multidimensional fac-
AHCPR recommends the following ABCDE mnemonic list tors. In formulating a pain management plan of care, an
as a summary of the clinical approach to pain assessment and assessment is crucial to identify the pain syndrome or the
management: cause of pain. A comprehensive assessment addresses each
type of pain and includes the following: a detailed history,
AAsk about pain regularly. Assess pain systematically.
including an assessment of the pain intensity and its charac-
BBelieve the patient and family in their reports of
teristics (Figure 51); a physical examination with pertinent
pain and what relieves it.
neurological examination, particularly if neuropathic pain is
CChoose pain control options appropriate for the
suspected; a psychosocial and cultural assessment; and an
patient, family, and setting.
appropriate diagnostic workup to determine the cause of
DDeliver interventions in a timely, logical, and coordi-
pain.5,40 Attention should be paid to any discrepancies between
nated fashion.
patients verbal descriptions of pain and their behavior and
EEmpower patients and their families. Enable them
appearance. The physical examination should focus on an
to control their course to the greatest extent possible.
examination of the painful areas as well as common referred
Members of the Joint Commission on Accreditation of pain locations. In frail or terminally ill patients, physical exam-
Healthcare Organizations (JCAHO) routinely inquire about ination maneuvers and diagnostic tests should be performed
pain assessment and management practices and quality assur- only if the ndings will potentially change or facilitate the
ance activities designed to monitor patient satisfaction and treatment plan. The burden and potential discomfort of any
outcomes within institutions. Revised JCAHO standards43 for diagnostic test must be weighed against the potential benet
assessing and managing pain in hospital, ambulatory, home of the information obtained.46 Ongoing and subsequent eval-
care, and long-term care have been released. The JCAHO uations are necessary to determine the effectiveness of pain
supports institutionalizing pain management and using an relief measures and to identify any new pain.
interdisciplinary approach to effect change in health care Patients or residents should be asked whether they have
organizations. It also recommends that culturally sensitive pain pain (screened for pain) on admission to a hospital, clinic,
rating scales appropriate to a patients age be available and that nursing home, hospice, or home care agency. If pain or dis-
new or existing assessment forms include pain. Additionally, comfort is reported, a comprehensive pain assessment should
the APS has created the phrase Pain: The Fifth Vital Sign to be performed at regular intervals, whenever there is a change
heighten health care provider awareness of pain assessment in the pain, after analgesic administration, and after any mod-
and treatment.44 The continuous quality improvement (CQI) ications in the pain management plan. The frequency of a
process is continuous, with the achievement of low levels of pain assessment is determined by the patients or residents
reported pain severity and of pain-related behaviors as an clinical situation. Pain assessment should be individualized
appropriate objective.45 Providing health care systems within a and documented so that all multidisciplinary team members
CQI perspective of patient-centered care requires that health involved will have an understanding of the pain problem.
care professionals seek opportunities to improve pain manage- Information about the patients pain can be obtained from
ment by improving assessment processes to produce the multiple sources: observations, interviews with the patient
desired outcome of decreased pain for patients. and signicant others, reviews of medical data, and feedback
Health care reform processes such as managed care require from other health care providers.
that patients be discharged sooner, without adequate time to Although pain is uniquely personal and subjective, its man-
assess pain or to evaluate newly prescribed pain management agement necessitates certain objective standards of care and
Figure 51. A pocket pain assessment guide (front and back) for use overall care. Sources: 1996 Regina Fink, University of Colorado
at the bedside. The health care professional can use this guide to Health Science Center, used with permission; and Wong D, Whaley
help the patient identify the level and intensity of pain and to deter- L. Clinical Handbook of Pediatric Nursing, 2nd ed. St. Louis:
mine the best approach to pain management in the context of CV Mosby, 1986, p. 373.
practice. The rst opportunity to understand the subjective think about their pain and their future with the pain. Perception
experience is at the perceptual level. Perception incorporates also includes the interpersonal framework in which the pain is
the patients self-report and the results of pain assessment experienced (with family or friends or alone), the meaning or
accomplished by the health care provider. Perception is the act reason for the pain, the persons coping pattern or locus of
of perceiving, to become aware directly in ones mind, through control, the presence of additional symptoms, and others con-
any of the senses; especially to see or hear, involving the cerns (e.g., family members depression or anxiety). Alterna-
process of achieving understanding or seeing all the way tively, assessment is a value judgment that occurs by observing
through; assessment is dened as the act of assessing, evalu- the others experience.
ating, appraising, or estimating by sitting beside another.47 Assessment and perception of the pain experience of a
Perception is an abstract process in which the person doing patient at the end of life is essential before planning inter-
the perceiving is not just a bystander but is immersed in ventions. However, the quality and usefulness of any assess-
understanding of the others situation. Perception is inu- ment is only as good as the ability of the assessor to be
enced by higher-order processes that characterize the cogni- thoroughly focused on the patient. This means listening empa-
tive and emotional appraisal of painwhat people feel and thetically, maintaining open communication, and validating
Pain Assessment 101
Figure 52. Factors inuencing the per-

ception of pain. Pain intensity is modu-
lated by psychological, social, and spiritual
factors as well as by tissue damage and
other physical inuences. Source: Repro-
duced with permission from Twycross
(1997), reference 48.
and legitimizing the concerns of the patient and family or sig- o]

nicant others. A clinicians understanding of the patients Multifactorial Model for Pain Assessment
pain and accompanying symptoms conrms that there is gen-
uine personal interest in facilitating a positive pain management Pain is a complex phenomenon involving many interrelated fac-
outcome. tors. The multifactorial pain assessment model is based on the
Pain does not occur in isolation. Other symptoms and work of a number of researchers over the last three decades.4954
concerns experienced by the patient compound the suffering An individuals pain is unique; it is actualized by the multidi-
associated with pain. Total pain has been described as the sum mensionality of the experience and the interaction among fac-
of all of the following interactions: physical, emotional/psy- tors both within the individual and in interaction with others.
chological, social, spiritual, bureaucratic, and nancial (Figure Melzack and Casey50 suggested that pain is determined by
52).48 At times, patients describe their whole life as painful. the interaction of three components: the sensory/discriminative
The provision of palliative care to relieve pain and suffering is (selection and modulation of pain sensations), the motiva-
based on the conceptual model of the whole person experi- tional/affective (affective reactions to pain via the brains retic-
encing total pain. ular formation and limbic system), and the cognitive (past or
It is not always necessary or relevant to assess all dimen- present experiences of pain). Evidence presented by Ahles and
sions of pain in all patients or in every setting. At the very least, coworkers51 supported the usefulness of a multidimensional
both the sensation of pain and the response to pain must be model for cancer-related pain by describing the following the-
considered during an assessment. The extent of the assessment oretical components of the pain experience: physiologic, sen-
should be dictated by its purpose, the patients condition or sory, affective, cognitive, and behavioral. McGuire53,55 expanded
stage of illness, the clinical setting, feasibility, and the rele- the work of Ahles and colleagues by proposing the integration
vance of a particular dimension to the patient or health care of a sociocultural dimension to the pain model. This sociocul-
provider. For example, a comprehensive assessment may tural dimension, comprising a broad range of ethnocultural,
be appropriate for a patient in the early stage of palliative care, demographic, spiritual, and social factors, inuences an indi-
whereas only a pain intensity score is needed when evaluating viduals perception of and responses to pain. Bates52 proposed
a patients response to an increased dose of analgesic. Incorpo- a biocultural model, combining social learning theory and the
ration of the multidimensional factors described in the follow- gate control theory, as a useful framework for studying and
ing paragraphs into the pain assessment will ensure a understanding cultural inuences on human pain perception,
comprehensive approach to understanding the patients pain assessment, and response. She believed that different social com-
experience. munities (ethnic groups) have different cultural experiences,
Table 52
Multifactorial Pain Assessment
Factors Question
Physiologic/sensory What is happening in the patients body to cause pain?

How does the patient describe his or her pain?
Affective How does the patients emotional state affect the patients
report of pain?
How does pain inuence the patients affect or mood?
Cognitive How do the patients knowledge, attitudes, and beliefs about
pain affect the pain experience?
How does the patients past experience with pain inuence
the pain?
Behavioral How do you know the patient is in pain and what is the
patient doing that tells you that pain is being experienced?
What is the patient doing to decrease his or her pain?
Sociocultural How does the patients sociocultural background affect pain
expression
Environmental How does the patients environment affect pain expression?
attitudes, and meanings for pain that may inuence pain per- as squeezing, cramping, or pressure; somatic pain is described
ception, assessment, tolerance, and neurophysiological, psy- as achy, throbbing, and well-localized. Additionally, some
chological, and behavioral responses to pain sensation. Hester54 patients may not actually complain of pain but may say they feel
proposed an environmental component, referring to the set- discomfort. Identifying the qualiers enhances understanding
ting, environmental conditions, or stimuli that affect pain assess- of the pains cause and should optimize pain treatment. Not
ment and management. Excessive noise, lighting, or adverse doing so may result in an incomplete pain prole. Table 53
temperatures may be sources of stress for individuals in pain summarizes various pain types, qualiers, etiological factors,
and may negatively affect the pain experience. and choice of analgesia based on pain type.
Given the complexity of the interactions among the factors,
if a positive impact on the quality of life of patients is the goal Intensity. Although an assessment of intensity captures only
of palliative care, then the multifactorial perspective provides one aspect of the pain experience, it is the most frequently
the foundation for assessing and ultimately managing pain. used parameter in clinical practice. Asking for the patients or
Some questions that can guide the nurses multifactorial pain residents pain intensity or pain score will objectively measure
assessment are reviewed in Table 52. how much pain a person is experiencing. Pain intensity should
be evaluated not only at the present level, but also at its least or
Physiological and Sensory Factors best, worst, and with movement. Patients should also be
asked how their pain compares with yesterday or with their
The physiological and sensory factors of the pain experience worst day. A review of the amount of pain after the administra-
explain the cause and characterize the persons pain. Patients tion of analgesics, adjuvant drugs, and/or nonpharmacological
should be asked to describe their pain, including its quality, approaches can also add information about the patients level
intensity, location, temporal pattern, and aggravating and alle- of pain. Pain intensity can be measured quantitatively with the
viating factors. The ve key factors included in the pain assess- use of a visual analog scale, numeric rating scale, verbal
ment are outlined in Figure 51. In the palliative care setting, descriptor scale, faces scale, or pain thermometer. In using
the patients cause of pain may have already been determined. these tools, patients typically are asked to rate their pain on a
However, changes in pain location or character should not scale of 0 to 10: no pain = 0; mild pain is indicated by a score of
always be attributed to these preexisting causes but should 1 to 3; moderate pain, 4 to 6; and severe pain, 7 to 10.6 No sin-
instigate a reassessment. Treatable causes, such as infections or gle scale is appropriate for all patients. During instrument
fractures, may be the cause of new or persistent pain. selection, the nurse must consider the practicality, ease, and
acceptability of the instruments use by terminally ill patients
Words. Patients are asked to describe their pain using words (for a description of these instruments, refer to Table 55). To
or qualiers. Neuropathic or deafferentation pain may be ensure consistency, staff should carefully document which
described as burning, shooting, numb, radiating, or lancinat- scale worked best for the patient, so that all members of the
ing pain; visceral pain is poorly localized and may be described health care team will be aware of the appropriate scale to use.
Pain Assessment 103
Table 53
Pain Descriptors
Pain Type Qualiers Etiological Factors Analgesic of Choice
Neuropathic (deafferentation) Burning, shooting, numb, Nerve involvement by tumor Antidepressants,

tingling, radiating, (cervical, brachial, lumbosacral anticonvulsants, local
lancinating, re-like, plexi), postherpetic neuralgia, anesthetics,
electrical sensations, pins diabetic neuropathies, benzodiazepines
and needles poststroke pain opioids,
steroids
Visceral (poorly localized) Squeezing, cramping, Bowel obstruction, venous Opioids (caution must
pressure, distention, deep, occlusion, ischemia, liver be used in the
stretching, bloated feeling metastases, ascites, thrombosis, administration of opioids
postabdominal or thoracic to patients with bowel
surgery, pancreatitis obstruction)
nonsteroidal
antiinammatory drugs
(NSAIDs)
Somatic (well localized) Dull, achy, throbbing, sore Bone or spine metastases, NSAIDs, steroids, muscle
fractures, arthritis, osteoporosis, relaxants,
injury to deep musculoskeletal, bisphosphonates
structures or supercial opioids and/or
cutaneous tissues radiation therapy (bone
metastasis)
Psychological All-encompassing, Psychological disorders Psychiatric treatments,
everywhere support, non-
pharmacological
approaches
Location. More than 75% of persons with cancer have pain in Aggravating and Alleviating Factors. If the patient is not
two or more sites56,57; therefore, it is crucial to ask questions receiving satisfactory pain relief, inquiring about what makes
about the location of a patients pain. Using an assessment sheet the pain better or worsethe alleviating and aggravating
with a gure demonstrating anterior and posterior views or factorswill assist the nurse and other health care profession-
encouraging the patient to point or place a nger on the area als in determining which diagnostic tests need to be ordered or
involved will provide more specic data than verbal self-report which nonpharmacological approaches can be incorporated
does. Separate pain histories should be acquired for each major into the plan of care. This is also an important aspect of the
pain complaint, since their causes may differ and the treatment initial pain assessment, because it helps to determine the
plan may need to be tailored to the particular type of pain. cause of the pain. Pain interference with functional status
For example, neuropathic pain may radiate and follow a der- can be measured by determining the pains effects on activities
matomal path; pain that is deep in the abdomen may be visceral; such as walking, sleeping, eating, energy, activity, relation-
and when a patient points to an area that is well-localized and ships, sexuality, and mood. Researchers have found that pain
nonradiating, the pain may be somatic indicating bone metasta- interference with functional status is highly correlated with
sis. Metastatic bone pain is the most common pain syndrome in pain intensity scores; for example, a pain intensity score
cancer patients, with up to 79% of patients experiencing severe greater than 4 has been shown to signicantly interfere with
pain before palliative therapy. For further information, visit the daily functioning.2,59
website, http://www.whocancerpain.wisc.edu.
Affective Factor
Duration. Learning whether the pain is persistent, intermittent,
or both will guide the nurse in the selection of interventions. The affective factor includes the emotional responses associ-
Patients may experience breakthrough painan intermittent, ated with the pain experience and, possibly, such reactions as
transitory are of pain.58 This type of pain requires a fast-acting depression, anger, distress, anxiety, decreased ability to con-
opioid, whereas persistent pain is usually treated with long- centrate, mood disturbance, and loss of control. A persons
acting, continuous-release opioids. Patients with progressive feelings of distress, loss of control, or lack of involvement in
diseases such as cancer and AIDS may experience chronic pain the plan of care may affect outcomes of pain intensity and
that has an ill-dened onset and unknown duration. patient satisfaction with pain management.
Cognitive Factor splinting, lying down, pacing, rocking, or suppression of the

expression of pain. Other cues can include anxious behaviors,
The cognitive factor of pain refers to the way pain inuences insomnia, boredom, inability to concentrate, restlessness,
the persons thought processes; the way the person views him- and fatigue.65 Unfortunately, some of these behaviors or cues
self or herself in relation to the pain; the knowledge, attitudes, may relate to causes or symptoms other than pain. For exam-
and beliefs the person has about the pain; and the meaning of ple, insomnia caused by depression may complicate the pain
the pain to the individual. Past experiences with pain may assessment.
inuence ones beliefs about pain. Whether the patient feels Nonverbal expression of pain can complement, contradict,
that another person believes in his or her pain also contributes or replace the verbal complaint of pain66 (see later discussion).
to the cognitive dimension. Bostrom and colleagues60 inter- Observing a patients behavior or nonverbal cues, understand-
viewed 30 palliative care patients with cancer-related pain to ing the meaning of the pain experience to the patient, and
examine their perceptions of the management of their pain. collaborating with family members and other health care pro-
Patients expressed a need for open communication with health fessionals to determine their thoughts about the patients pain
care professionals about their pain problem and a need for are all part of the process of pain assessment.
being involved in the planning of their pain treatment. Those The behavioral dimension also encompasses the uncon-
who felt a trust in their health care organization, their nurse, scious or deliberate actions taken by the person to decrease the
and their doctor described an improved ability to participate pain. Pain behaviors include, but are not limited to, using both
in their pain management plan. prescribed and over-the-counter analgesics; seeking medical
Patients knowledge and beliefs about pain play an obvious assistance; using nonpharmacological approaches; and other
role in pain assessment, perception, function, and response to coping strategies such as removing aggravating factors (e.g.,
treatment. Patients may be reluctant to tell the nurse when noise and light). Behaviors used to control pain in patients
they have pain; they may attempt to minimize its severity, may with advanced-stage disease include assuming special posi-
not know they can expect pain relief, and may be concerned tions, immobilizing or guarding a body part, rubbing, and
about taking pain medications for fear of deleterious effects. adjusting pressure to a body part.
A comprehensive approach to pain assessment includes eva-
luation of the patients knowledge and beliefs about pain Sociocultural Factor
(Table 54) and its management and common misconceptions
about analgesia.29,35,61,62 The sociocultural factor encompasses all of the demographic
variables of the patient experiencing pain. The impacts of
Behavioral Factor these factors (e.g., age, gender, ethnicity, spirituality, marital
status, social support) on pain assessment, treatment, and out-
Pain behaviors may be a means of expressing pain or a coping comes have been examined in the literature. Although many
response.63,64 The behavioral factor describes actions the studies have promoted each individual dimension, few have
person exhibits related to the pain, such as verbal complaints, concentrated on their highly interactive nature. Ultimately, all
moaning, groaning, crying, facial expressions, posturing, of these factors can inuence pain assessment.
Table 54
Common Patient Concerns and Misconceptions About Pain and Analgesia
Pain is inevitable. I just need to bear it.

If the pain is worse, it must mean my disease (cancer) is spreading.
I had better wait to take my pain medication until I really need it or else it wont work later.
My family thinks I am getting too spacey on pain medication; Id better hold back.
If its morphine, I must be getting close to the end.
If I take pain medicine (such as opioids) regularly, I will get hooked or addicted.
If I take my pain medication before I hurt, I will end up taking too much. Its better to
hang in there and tough it out.
Id rather have a good bowel movement than take pain medication and get constipated.
I dont want to bother the nurse or doctor; theyre busy with other patients.
If I take too much pain medication, it will hasten my death.
Good patients avoid talking about pain.
Sources: Ward et al. (1993), reference 33; Jones et al. (2005), reference 35; Fink (1997), reference 61; Gordon and Ward
(1995), reference 62.
Pain Assessment 105
Age. Much of the pain literature has called attention to the pain (bone metastases). Neuropathic pain was observed in
problem of inadequate pain assessment and management in both women and men yet was more severe than the other
the elderly in a palliative care setting. Elderly patients suffer pain types. Whether women are more willing to report pain
disproportionately from chronic painful conditions and have than men or experience pain differently from men is unclear.
multiple diagnoses with complex problems and accompany- However, beliefs about gender differences may affect nurses
ing pain. Elders have physical, social, and psychological needs interpretation and treatment of patients pain. Nurses and
distinct from those of younger and middle-aged adults, and other health care professionals need to be mindful of possible
they present particular challenges for pain assessment and gender differences when assessing pain and planning individ-
management. Pain assessment may be more problematic in el- ualized care for persons in pain.
derly patients because their reporting of pain may differ from
that of younger patients due to their increased stoicism.35 El- Ethnicity. Despite controversies and uncertainties, the rela-
derly people often present with failures in memory, depres- tionship between ethnicity and pain is an important area for
sion, and sensory impairments that may hinder history taking; study. The term ethnicity refers to one or more of the follow-
they may also underreport pain because they expect pain to ing81: (1) a common language or tradition, (2) shared origins
occur as a part of the aging process.67,68 Moreover, dependent or social background, and (3) shared culture and traditions
elderly people may not report pain because they do not want that are distinctive, passed through generations, and create a
to bother the nurse or doctor and are concerned that they will sense of identity. Ethnicity may be a predictor of pain expres-
cause more distress in their family caregivers.69 sion and response. While assessing pain, it is important to
Studies have documented the problem of inadequate pain remember that certain ethnic groups and cultures have strong
assessment in the elderly.70 Cleeland and colleagues2 studied beliefs about expressing pain and may hesitate to complain of
1308 outpatients with metastatic cancer and found that those unrelieved pain.82 The biocultural model of Bates and associ-
70 years of age or older were more likely to have inadequate ates83 proposed that culturally accepted patterns of ethnic
pain assessment and analgesia. Approximately 40% of elderly meanings of pain may inuence the neurophysiological pro-
nursing home patients with cancer experience pain every cessing of nociceptive information that is responsible for pain
day, according to Bernabei and colleagues,71 who reviewed threshold, pain tolerance, pain behavior, and expression. Thus,
Medicare records of more than 13,625 cancer patients aged the manner in which a person reacts to the pain experience
65 years or older who were discharged from hospitals to almost may be strongly related to cultural background. The biocul-
1500 nursing homes in ve states. Pain assessment was based tural model also hypothesizes that social learning from family
on patient self-report and determined by a multidisciplinary and group membership can inuence psychological and phys-
team of nursing home personnel involved with the patients. iological processes, which in turn can affect the perception and
Of the more than 4000 patients who complained of daily pain, modulation of pain. Bates and colleagues83 stressed that all
16% were given a nonopioid drug, 32% were given codeine or individuals, regardless of ethnicity, have basically similar neuro-
another weak opioid, 26% received morphine, and 26% received physiological systems of pain perception. Early clinical studies
no analgesic medication at all. As age increased, a greater proof pain expression and culture concluded that the preferred
portion of patients in pain received no analgesic drugs (21% values and traditions of culture affected an individuals han-
of patients aged 65 to 74 years, 26% of those aged 75 to 84 dling and communication of pain.8486
years, and 30% of those 85 years of age and older; P = 0.001). Other studies have reported that members of minority
Therefore, it is imperative to pay particular attention to pain groups are at risk for undertreatment of pain.2,87,88 However,
assessment in the elderly patient, so that the chance of inade- caution must be used when interpreting the results of these
quate analgesia is decreased. Dementia, cognitive and sensory studies, because the ndings may be due to variations in the
impairments, and disabilities can make pain assessment and pain experience, pain behavior, the language of pain, or staff
management more difcult. Also, residents in long-term care perception and subsequent pain management.89 When caring
facilities are likely to have multiple medical problems that can for any patient who is experiencing pain, it is important for
cause pain. the nurse to avoid cultural stereotyping and to provide cultur-
ally sensitive assessment and educational materials, enlisting
Gender. Gender differences affect sensitivity to pain, pain tol- the support of an interpreter when appropriate.
erance, pain distress, willingness to report pain, exaggeration
of pain, and nonverbal expression of pain.7275 Multiple studies Marital Status and Social Support. The degree of family or
have demonstrated that men show more stoicism than women social support in a patients life should be assessed, because
do, women exhibit lower pain thresholds and less tolerance to these factors may inuence the expression, meaning, and per-
noxious stimuli than men, women become more upset when ception of pain and the ability to comply with therapeutic rec-
pain prevents them from doing things they enjoy, and women ommendations. Few studies have examined the inuence of
seek care of the pain sooner and respond better to -opioid marital status on pain experience and expression. Dar and
analgesics than do men.7579 The mechanism of pain was stud- coworkers90 studied 40 patients (45% women, 55% men) with
ied in 181 men and women with advanced cancer.80 Women metastatic cancer pain and found that patients minimized
experienced more visceral pain, whereas men had more somatic their pain when their spouses were present. When asked if and
how their pain changed in the presence of spouses, 40% of the and colleagues98 suggested that patients who are cognitively
patients said the pain was better and 60% reported no change; intact might have better pain assessments.
none reported that the pain was worse. The majority (64%) of A multifactorial framework describing the inuences of all
patients agreed that they conceal their pain so that their spouses of these factors on the assessment of pain and the pain experi-
will not be upset, even though spouses were generally accurate ence is desirable to attain positive pain outcomes. The factors
in their estimates of the patients pain levels. Almost all patients comprising the framework are assumed to be interactive and
reported a very high degree of satisfaction with the way their interrelated. Use of this framework for pain assessment has
spouses helped them cope with pain. clear implications for clinical practice and research.
Spirituality. Spross and Wolff Burke91 believed that the spiri-

tual dimension mediates the persons holistic response to pain o]
and pain expression and inuences how the other aspects of Quantitative Assessment of Pain
pain are experienced. Whereas pain refers to a physical sensa-
tion, suffering refers to the quest for meaning, purpose, and Although pain is a subjective, self-reported experience of the
fulllment. Although pain is often a source of suffering, suf- patient, the ability to quantify the intensity of pain is essential to
fering may occur in the absence of pain. Many patients believe monitoring a patients responsiveness to analgesia.
that pain and suffering are meaningful signs of the presence of
a higher being and must be endured; others are outraged by Pain Intensity Assessment Scales
the pain and suffering they must endure and demand allevia-
tion. The nurse must verify the patients beliefs and give them The most commonly used pain intensity scalesthe visual
permission to verbalize their personal points of view. Assess- analog scale (VAS), the numeric rating scale (NRS), the verbal
ing a patients existential view of pain and suffering is impor- descriptor scale (VDS), the Wong-Baker FACES pain scale,
tant because it can affect the processes of healing and dying. the Faces Pain Scale (FPS), Faces Pain Scale-Revised (FPS-R),
Understanding patients use of spiritual comfort strategies is and the pain thermometerare illustrated in Figure 53 and
also an area to explore. Dunn and Horgas92 found that elderly reviewed in Table 55 with advantages and disadvantages
women and older patients of minority background reported delineated. These scales have proved to be very effective, repro-
using religious coping strategies (prayer or spiritual comfort) ducible means of measuring pain and other symptoms, and
to manage their pain more often than did older Caucasian they can be universally implemented and regularly applied in
men. Spiritual assessment is covered in greater detail in Chap- many care settings. How useful these tools are in the assess-
ter 30. ment of pain in the palliative care patient is a question that
still needs to be answered.
Environmental Factor Although no one scale is appropriate or suitable for all
patients, Dalton and McNaull123 recommended universal
The environmental factor refers to the context of care, the set- adoption of a 0-to-10 scale, rather than a 0-to-5 or a 0-to-100
ting, or the environment in which the person receives pain scale, for clinical assessment of pain intensity in adult patients.
management. Creating a peaceful environment free from bright Jensen and colleagues124 examined the maximum number of
lights, extreme noise, and excessive heat or cold may assist in levels needed to measure pain intensity in patients with
alleviating the patients pain. chronic pain and concluded that an 11-point scale (0 to 10)
Additionally, particular nurse or physician specialists may provided sufcient levels of discrimination when compared
perceive an individuals pain differently. A review of the litera- with a 0-to-100 scale. Standardization may promote collabora-
ture suggests that nurses and other health care professionals are tion and consistency in evaluation among caregivers in multi-
inconsistent in their reliance on patient self-report as a major ple settings (i.e., inpatient, outpatient, and home care or
component in the assessment process. Agreement between hospice environments). It would facilitate multiple studies of
patients perceptions and health care professionals perceptions pain across sites. Collection of comparative data would be
was relatively low and was generally an inadequate substitute enabled, allowing for simplication of the analytical process
for patients reports of pain.93,94 Ferrell and colleagues95 found when conducting research. Detailed explanation of how to use
that 91% of nurses surveyed reported asking patients about the the pain scales is necessary before use by patients in any clini-
intensity of their pain, yet only 45% believed that a patients cal care area.
report of pain was the most important factor in determining Another area deserving attention is health care profession-
pain intensity. It is not apparent whether this belief resulted als inconsistent use of word anchors on pain intensity scales.
from a deciency of information, lack of time to perform an The intention behind the use of a word anchor to discriminate
assessment, or interference of values or bias in the decision- pain intensity is to provide a common endpoint; although that
making process. Health care providers ratings corresponded point may have not been reached by a patient, it would pro-
more with patients ratings when pain was severe.94,96 Addition- vide a place for any pain experienced to date or pain that
ally, when nurses pain assessment was documented over time, may be experienced in the future. Some of the common end-
early assessments were more accurate than later ones.97 Werner point word anchors that have been used are worst possible
Pain Assessment 107
A. Visual Analog Scale B. Numeric Rating Scale
Worst possible 010 Numeric Rating Scale

pain
0 1 2 3 4 5 6 7 8 9 10
No Moderate Worst
pain pain possible
pain
D. Wong-Baker FACES Scale
Wong-Baker FACES Pain Rating Scale
0 2 4 6 8 10
No Hurts Hurts Hurts Hurts Hurts
hurt little little even whole worst
bit more more lot
Explain to the resident that each face is for a person who feels happy
because he has no pain (hurt) or sad because he has some or a lot of
No pain pain. On the 05 scale, Face 0 is very happy because he doesnt hurt at
all. Face 2 hurts just a little bit. Face 4 hurts a little more. Face 6 hurts
even more. Face 8 hurts a whole lot. Face 10 hurts as much as you can
imagine, although you dont have to be crying to feel this bad. Ask the
person to choose the face that best descibes how he is feeling.
Source: Adapted from Wong & Baker (1988), reference 111.
C. Verbal Descriptor Scale G. Pain Thermometer

No Slight Mild Moderate Severe Extreme Pain as
Pain as bad as
pain pain pain pain pain pain bad as it
it could be
could be
Extreme pain
Severe pain
E. The Bieri Faces Pain Scale
Moderate pain
Mild pain
Slight pain
No pain
F. The Faces Pain Scale Revised
0 2 4 6 8 10
Figure 53. Commonly used pain intensity scales. Refer to table 55 for descriptions, advantages,
and disadvantages.
pain,pain as bad as it can be,worst pain imaginable,worst Comparison of Pain Scales

pain you have ever had, most severe pain imaginable, and
most intense pain imaginable. Inconsistent or different word Several studies have been systematically reviewed,125,126 and
anchors may yield different pain reports. Therefore, it is impor- although many are limited in sample size and population, a pos-
tant to come to some consensus about consistent use of word itive correlation was demonstrated among the VAS, VDS, NRS,
anchors. Wong-Baker FACES scale, and Bieri FPS. Each of the commonly
Table 55
Pain Intensity Assessment Scales
Scale Description Advantages Disadvantages
A. Visual Analog Scale (VAS) A vertical or horizontal line of Positive correlation with other Scoring may be more time-
10 cm (or 100 mm) in length self-reported measures of consuming and involve
anchored at each end by verbal pain intensity and observed more steps.99 Patients may
descriptors (e.g., no pain and pain behaviors.99,100 have difculty
worst possible pain). Patients Sensitive to treatment effects understanding and using a
are asked to make a slash and distinct from subjective VAS measure.104 Too
mark of X on the line at the components of pain.101,102 abstract for many adults,
place that represents the Qualities of ratio data with and may be difcult to use
amount of pain experienced. high number of response with geriatric
categories make it more patients/residents,
sensitive to changes in pain nonEnglish-speaking
intensity.100,103 Parametric patients, and patients with
statistics can be used to physical disability,
analyze data. immobility, or reduced
visual acuity, which may
limit their ability to place
a mark on the line.104106
B. Numeric Rating Scale The number that the patient Validity and demonstrated Lack of research comparing
gives represents his/her pain sensitivity to treatments that sensitivity with that of VAS.
intensity from 0 to 10 with affect pain intensity.107
the understanding that Verbal administration to
0 = no pain and 10 = worst patients allows those by phone or
possible pain. who are physically and visually
disabled to quantify pain
intensity.108 Ease in scoring,
high compliance, high
number of response
categories.99,108 Scores may
be treated as interval data and
are correlated with VAS.109
C. Verbal Descriptor Scale Adjectives reecting extremes Short, easily administered to Less reliable among illiterate
(VDS) of pain are ranked in order patients, easily comprehended, patients and persons with
of severity. Each adjective is high compliance.99 Easy to limited English
given a number which score and analyze data on vocabulary.109 Patients
constitutes the patients an ordinal level.64 Validity is must choose one
pain intensity. established.101 Sensitivity to word to describe their pain
treatments that are known to intensity even if no word
affect pain intensity.100 accurately describes it.99
Variability in use of verbal
descriptors is associated with
affective distress.104 Scores on
VDS are considered ordinal
data; however, the distances
between its descriptors are
not equal but categorical.
Thus, parametric statistical
procedures may
be suspect.108
D. FACES Scale The scale consists of six Validity is supported by Presence of tears on the most
(Wong-Baker111) cartoon-type faces. The no research reporting that pain face may introduce
pain (0) face shows a widely persons from many cultures cultural bias if the scale is
smiling face and the most recognize facial expressions used by adults from cultures
pain (5) face shows a face and identify them in similar not sanctioning crying in
(continued )
Pain Assessment 109
Table 55
Pain Intensity Assessment Scales (continued )
Scale Description Advantages Disadvantage
with tears.110,111 The scale is ways.112 Simplicity, ease of response to pain.116

treated as a Likert scale and use, and correlation with VAS
was originally developed by makes it a valuable option in
Wong and Baker to measure clinical settings.113,114 Short;
childrens pain intensity or requires little mental energy
amount of hurt. It has also and little explanation for
been used in adults. use.115
E. Faces Pain Scale (FPS)117 Developed by Bieri and Neutral face represents no pain. Facial expressions may be
colleagues to measure pain Incorporates facial difcult to discern by patients
intensity in children. expressions associated with who have visual difculties.
Based on drawings made by pain in adultsfurrowed The FPS may measure other
children, the FPS consists of brow, tightened lids/cheek constructs (anger, distress,
seven oval faces ranging from raising, nose wrinkling/lip and impact of pain on
a neutral face (no pain) to a raising, and eye closure. functional status) than just
grimacing, sad face without Oval-shaped faces without pain intensity.118,119
tears (worst pain). tears are more adult-like in
appearance, possibly making
the scale more acceptable
to adults.117
F. Faces Pain ScaleRevised Adapted from the FPS to make Easy to administer, uses Facial expressions may be
(FPS-R)120 it compatible with a 010 realistic facial expressions.121 difcult to discern by
metric scale. The FPS-R Has been used in children as patients who have visual
measures pain intensity by young as 4 years of age. difculties.
using six drawings of faces. The FPS-R uses faces without
tears or smiles to avoid affect
(depression or mood) instead
of pain intensity.
G. Pain Thermometer122 Modied vertical verbal
descriptor scale that is
administered by asking the
patient to point to the words
that best describe his/her
pain.
used rating scales appear to be adequately valid and reliable as a elderly subjects had a tendency to conceptualize the vertical
measure of pain intensity in both cancer patients and elders. presentation more accurately. Elderly patients may have decits
The VAS has been evaluated comprehensively by many in abstract ability that make the VAS difcult to use.130 Other
researchers over the years and has usually been found to be researchers have noted that increased age is associated with an
valid and reliable.127,128 However, some patients nd it difcult increased incidence of incorrect response to the VAS.126,129
to convert a subjective sensation into a straight line.129 Herr Paice and Cohen108 used a convenience sample of 50 hospi-
and Mobily106 studied 49 senior citizens 65 years of age with talized adult cancer patients with pain to study their prefer-
reported leg pain to determine the relationships among various ence in using the VAS, the VDS, and the NRS. Fifty percent of
pain intensity measures, to examine the ability of patients to the patients preferred using the NRS. Fewer patients preferred
use the tools correctly, and to determine elderly peoples prefer- the VDS (38%), and the VAS was chosen infrequently (12%).
ences. The VAS consisted of 10-cm horizontal and vertical lines; Twenty percent of the patients were unable to complete the VAS
the VDS had six numerically ranked choices of word des- or had difculty in doing so. Problems included needing assis-
criptors, including no pain, mild pain, discomforting, tance with holding a pencil, making slash marks that were too
distressing,horrible, and excruciating; the NRS had num- wide or not on the line, marking the wrong end of the line, and
bers from 1 to 20; and the pain thermometer had seven choices, asking to have instructions read repeatedly during the survey.
ranging from no pain to pain as bad as it could be. The scale Additional problems exist with use of the VAS. When multi-
preferred by most respondents was the VDS. Of the two VAS ple horizontal scales are used to measure different aspects or
scales, the vertical scale was chosen most often because the dimensions (e.g., pain intensity, distress, depression), subjects
tend to mark all of the scales down the middle. Pain intensity has VAS and VDS. These scales may be too abstract or too difcult
been noted to be consistently higher on each scale for depressed for patients in the palliative care setting. Because most dying
and anxious patients compared with nondepressed, nonanxious patients are elderly, simple pain scales, such as the NRS or a
patients.130 Photocopying of VAS forms may result in distortion faces scale, may be more advantageous.
so that the scales may not be exactly 10 cm long and the reliabil-
ity of measurement may be in question. Physical disability or Multifactorial Pain Instruments
decreased visual acuity may limit the ability of the palliative care
patient to mark the appropriate spot on the line. The VAS also There are several pain measurement instruments that can be
requires pencil and paper and requires the patient to be knowl- used to standardize pain assessment, incorporating patient
edgeable about various English pain adjectives. In conclusion, a demographic factors, pain severity scales, pain descriptors,
VAS is more difcult to use with elderly patients and has a higher and other questions related to pain.134 Four instruments have
failure rate, compared with an NRS or a VDS, in addition, the been considered short enough for routine clinical use with
failure rate is slightly greater with an NRS compared with a VDS. cancer patients. All of these instruments provide a quick way
The use of a faces pain scale to measure pain intensity of measuring pain subjectively; however, their use in seriously
avoids language and may cross cultural differences.131 Several ill, actively dying patients needs further study (see the AHCPR
faces pain scales have been used110,111,117,120 to assess pain in Acute and Cancer Pain Guidelines5 for a more comprehensive
both pediatric and adult populations. Jones and associates132 description of many of these instruments).
asked elderly nursing home residents to choose which of three
pain intensity scales (NRS, VDS, and FPS) they preferred to Short Form McGill Pain Questionnaire. A short form of the
use to rate their pain. Of those able to choose, the VDS was McGill Pain Questionnaire135 (SF-MPQ) has been developed
the most commonly selected (52%); 29% chose the NRS; and includes 15 words to describe pain. Each word or phrase
19% preferred the FPS. More men than women and those resis rated on a four-point intensity scale (0 = none, 1 = mild,
idents with moderate to severe pain preferred the NRS; a 2 = moderate, and 3 = severe). Three pain scores are derived
higher percentage of minority (Hispanic) residents preferred from the sum of the intensity rank values of the words chosen
the FPS. for sensory, affective, and total descriptors. Two pain measures
Findings from various studies indicated that patients used are also included in the SF-MPQ: the Present Pain Intensity
the FPS to measure pain appropriately and that the FPS should Index (PPI) and a 10-cm VAS. The SF-MPQ has demonstrated
be considered an alternative to the NRS or VAS in various pop- reliability and validity and is available in multiple languages.
ulations. However, the literature regarding choice of scale
among ethnic groups is equivocal. Carey and colleagues133 asked Brief Pain Inventory. The Brief Pain Inventory136 (BPI) is a
hospitalized patients which of several scales they preferred to multifactorial instrument that address pain etiology, history,
use: a modied Wong-Baker FACES scale (tears were removed), intensity, quality, location, and interference with activities.
an NRS, or a vertical VAS. They found that less educated adults, Patients are asked to rate the severity of their pain at its worst,
both African American and Caucasian American, preferred the least, and average and at present. Using an NRS (0 to 10),
Wong-Baker FACES scale; more educated patients preferred patients are also asked for ratings of how much their pain inter-
the NRS. Stuppy115 also found that patients preferred the FPS to feres with walking ability, mood, general activity, work, enjoy-
the NRS, VAS, or VDS, with no signicant differences noted ment of life, sleep, and relationships with others. The BPI also
between African American and Caucasian American partici- asks patients to represent the location of their pain on a drawing
pants. Taylor and Herr119,131 discovered that both cognitively and asks about the cause of pain and the duration of pain relief.
impaired and intact African American elders preferred the FPS
to the NRS or the VDS, and they found support for the ordinal Memorial Pain Assessment Card. The Memorial Pain Assess-
nature of the FPS. Participants clearly agreed that the FPS repre- ment Card137 (MPAC) is a simple valid tool consisting of three
sented pain but also agreed that the FPS may represent other VAS, for pain intensity, pain relief, and mood, and one VDS to
constructs, such as sadness or anger, depending how they were describe the pain. The MPAC can be completed by patients in
cued; this suggests that the FPS may be measuring pain affect, 20 seconds or less and can distinguish between pain intensity,
not just intensity. Jensen and coworkers118 examined six pain relief, and psychological distress.
rating scales, including the seven-point FPS, in persons with
cerebral palsy and also found that the FPS measured more than City of Hope Patient and Family Pain Questionnaires. The
just pain intensity; it may be reective of a distress dimension City of Hope Patient and Family Pain Questionnaires138 were
associated with pain and its impact on functioning. designed to measure the knowledge and experience of patients
In summary, a variety of scales have been used to assess with chronic cancer pain and their family caregivers. The
pain in many different patient populations. Each has been 16-item surveys use an ordinal scale format and can be admin-
widely used in clinical research and practice. Little research istered in inpatient or outpatient settings.
has been done on the appropriateness of pain scales in the pal- Because terminally ill patients have multiple symptoms, it is
liative care setting. Intellectual understanding and language impossible to limit an assessment to only the report of pain.
skills are prerequisites for such pain assessment scales as the Complications or symptoms related to the disease process may
Pain Assessment 111
exacerbate pain, or interventions to alleviate pain may cause side verbal and nonverbal behaviors. Verbal self-reports, whenever
effects that result in new symptoms or a worsening of other possible, are still important to reect the individuals percep-
symptoms, such as constipation or nausea. Symptoms such as tion of pain. Because nonverbal pain behaviors may or may
fatigue and anxiety are distressful and may affect quality of life in not concur with verbal reports, caution is necessary when
seriously ill cancer and noncancer patients.139,140 Therefore, pain assessing pain based solely on any single parameter. In addi-
assessment must be accompanied by assessment of other symp- tion to the appropriate use and selection of pain assessment
toms. Various surveys or questionnaires not only assess pain but instruments, the following points recommended by Taylor
also incorporate other symptoms into the assessment process. and Herr131 should be remembered when assessing pain in
Many of these instruments are discussed in other chapters. cognitively impaired older individuals: allow enough time for
patients to understand questions and formulate answers;
avoid overstimulation; ensure adequate lighting and hearing
o] aids (if needed); and provide large print for ease of reading.
Pain Assessment in Nonverbal or
Cognitively Impaired Patients Pain Behaviors
The gold standard or primary source of pain assessment is the It may be more complicated to assess nonverbal cues in the
patients self-report. However, pain instruments that rely on palliative care setting because terminally ill patients with chronic
verbal self-report and are very useful in the early stages of pal- pain, in contrast to patients with acute pain, may not demon-
liative care may not be practical for dying patients who cannot strate any specic behaviors indicative of pain. It is also not
verbalize pain or for patients with advanced disease if delirium satisfactory and even erroneous to assess pain by reliance on
or cognitive failure is prevalent. The IASP notes that pain is involuntary physiological bodily reactions, such as increases in
always subjective, that each individual learns about pain blood pressure, pulse, or respiratory depth. Elevated vital signs
through experiences related to injury in early life, and that may occur with sudden, severe pain; but they usually do not
the inability to communicate verbally does not negate the occur with persistent pain after the body reaches physiological
possibility that an individual is experiencing pain and is in equilibrium.156 However, the absence of behavioral or involun-
need of appropriate pain-relieving treatment.21 tary cues does not negate the presence of pain.5 Assessment of
The potential for unrelieved and unrecognized pain is behavior for signs of pain during rest and movement provides
greater in patients who cannot verbally express their discom- a potentially valid and reliable alternative to verbal and physi-
fort. Older, nonverbal, and cognitively impaired patients are at ological indices of pain.157,158 Examples of pain behaviors in
increased risk for pain,139,141143 as well as underassessment and cognitively impaired or nonverbal patients or residents are
undertreatment of pain.95,144148 Patients who are nonverbal or displayed in Table 56.159161
have dementing conditions such as Alzheimers disease are Pain indicators in elderly patients with dementia identied by
usually excluded from pain studies, and pain assessment and nursing home staff members included specic physical repetitive
treatment in this group are poorly understood.149 movements, vocal repetitions, physical signs of pain, and changes
The inability to communicate effectively due to impaired in behavior from the norm for that person.162 Four distinct facial
cognition and sensory losses is a serious problem for many actions that have been consistently identied in pain expression
patients with terminal illnesses. Cognitive failure develops in the are brow lowering, eye narrowing or closure, and raising the
majority of cancer patients before death, and agitated delirium upper lip.157 Although facial expressions are related to pain inten-
is frequently observed in patients with advanced cancer.150,151 sity ratings on sensory and affective scales,163,164 facial assessment
Loss of consciousness occurs in almost half of dying patients tools such as the Facial Action Coding System (FACS)165 are too
during the nal three days of life.152 These complications have time-consuming and laborious for use in the clinical setting.
been shown in part to be signicantly correlated with a higher Furthermore, observations of facial expressions may not be valid
dose requirement of opioids and the presence of icterus.153 in those patients with conditions that result in distorted facial
Clearly, pain assessment techniques and tools are needed that expressions, such as Parkinsons disease or stroke. Cultural inu-
apply to patients, whether mentally incompetent or nonverbal, ences on behavioral expressions and interpretation of behavior
who communicate only through their unique behavioral res- must also be considered.90
ponses. Interpretation of the meaning of specic biobehavioral
response patterns during episodes of pain could potentially The Pain Experience in Patients
reduce barriers to optimal pain assessment and management in with Cognitive Failure
nonverbal patients.154 An instrument that could detect a reduc-
tion in pain behaviors could assess the effectiveness of a pain The experience or behavior of pain in individuals with cognitive
management plan. However, because pain is not just a set of failure or dementia may be altered or different from that of
pain behaviors, the absence of certain behaviors would not nec- patients or residents who are cognitively intact. There is a ten-
essarily mean that the patient was pain free.155 dency for patients with increased levels of cognitive impairment
It is important for nurses and other health care profession- to report less severe pain.131,144,166169 Lapalio and Sakla170 sug-
als to remember that pain is communicated through both gested some impairment of affective pain perception in patients
with Lewy body dementia, because the Lewy bodies have been
Table 56 shown to occupy the hypothalamus and frontal cortex. Signi-
Possible Pain Behaviors in Nonverbal and Cognitively
cantly increased pain tolerance in patients with mild demen-
Impaired Patients or Residents
tia,171173 reported by several experimental studies, implies that
Behavior Category Possible Pain Behaviors motivational-affective and cognitive-evaluative, not sensory-
discriminative pain systems are affected: In other words, mildly
Facial expressions Grimace, frown, winces, sad or
demented individuals seem to experience the same nociceptive
frightened look, wrinkled
forehead, furrowed brow, closed
sensations as nondemented individuals, but they fail to interpret
or tightened eyelids, clenched these sensations as painful149 (p. 103). If the patients anxiety and
teeth or jaw expectation of pain are decreased, impaired memory may reduce
Body movements Restless, agitated, jittery, cant
pain. The individual with memory impairments may also be
seem to sit still, dgeting, unable to adapt to pain due to a loss of habituation to painful
pacing, rocking, constant or stimuli.174 Studies suggesting that pain reports in cognitively
intermittent shifting of position, impaired individuals are decreased in intensity and frequency are
withdrawing probably related to a decreased capacity to report pain.175
Protective mechanisms Bracing, guarding, rubbing or Behavior or responses caused by noxious stimuli in a cog-
massaging a body part, nitively impaired or demented individual may not necessarily
splinting; clutching or holding reect classic pain behaviors. In a study of 26 patients with
onto side rails, bed, tray table, or painful conditions from a nursing home Alzheimers unit,
affected area during movement Marzinski176 reported diverse responses to pain that were not
Verbalizations Saying common phrases, such as, typical of conventional pain behaviors. For example, with
Help me, Leave me alone, pain, a patient who normally moaned and rocked became
Get away from me, Dont quiet and withdrawn. Pain in another nonverbal patient
touch me, or Ouch, cursing, caused rapid blinking. Other patients who normally exhibited
verbally abusive, praying disjointed verbalizations could, when experiencing pain, give
Vocalizations Moaning, groaning, crying, accurate descriptions of their pain. Parmelee167 and Huff-
whining, oohing, aahing, calling man177 and their colleagues also found that verbal pain reports
out, screaming, breathing heavily by patients with dementia are accurate and valid.
Mental status changes Confusion, disorientation, distress The questions and suggestions in Table 57 can be used as a
Changes in activity Decreased appetite, sleep template for assessment of pain in the nonverbal or cognitively
patterns, routines, alterations, decreased social impaired patient or resident. A summary of instruments used to
or interpersonal activity participation, change in assess pain in nonverbal or cognitively impaired patients is found
interactions ambulation, immobilization in Table 58. One of these instruments, the Pain Assessment in
Advanced Dementia (PAINAD), is presented in Table 59.
Sources: Adapted from American Geriatrics Society Panel on Persistent
Pain (2002), reference 18; American Medical Directors Association (2003),
reference 19; and references 132, 145, 159, 160, and 161.
Table 57
Assessment and Treatment of Pain in the Nonverbal or Cognitively Impaired Patient/Resident
Is there a reason for the patient to be experiencing pain?

Was the patient being treated for pain? If so, what regimen was effective (include pharmacologic and nonpharmacologic interventions)?
How does the patient usually act when he or she is in pain? (Note: the nurse may need to ask family/signicant others or other health
care professionals.)
What is the family/signicant others interpretation of the patients behavior? Do they believe the patient is in pain? Why do they feel
this way?
Try to obtain feedback from the patient; for example, ask patient to nod head, squeeze hand, move eyes up or down, raise legs, or hold
up ngers to signal presence of pain.
If appropriate, offer writing materials or pain intensity charts that patient can use or point to.
If there is a possible reason for or sign of acute pain, treat with analgesics or other pain-relief measures.
If a pharmacologic or nonpharmacologic intervention results in modifying pain behavior, continue with treatment.
If pain behavior persists, rule out potential causes of the behavior (delirium, side effect of treatment, symptom of disease process); try
appropriate intervention for behavior cause.
Explain interventions to patient and family/signicant other.
Pain Assessment 113
Table 58
Pain Assessment Tools for the Cognitively Impaired or Nonverbal Patient/Resident
Tool Goal Dimensions/Parameters
Discomfort Scale for Dementia of Measure discomfort in elders with advanced Noisy breathing
the Alzheimer Type dementia who have decreased cognition Negative vocalizations
(DSDAT)187 and verbalization Content facial expression
Sad facial expression
Frightened facial expression
Frown
Relaxed body language
Tense body language
Fidgeting
Assessment of Discomfort in Evaluate persons with difcult behaviors Facial expression
Dementia Protocol that may represent discomfort and develop Mood
(ADD)188190 a treatment plan for physical and Body language
affective discomfort Voice
Behavior
Other
Checklist of Nonverbal Pain Measure pain behaviors in cognitively Nonverbal vocalizations
Indicators (CNPI)144,145 impaired elders Facial grimaces/winces
Bracing
Rubbing
Restlessness
Verbalizations
Noncommunicative Patients Pain Assess pain behaviors in patients with Activity
Assessment Instrument dementia by nursing assistants Behaviors and intensity
(NOPPAIN)191 Pain words
Pain noises
Pain faces
Bracing
Rubbing
Restlessness
Location
Pain thermometer
Pain Assessment for the Dementing Assess pain behaviors in patients with Physical
Elderly (PADE)192 advanced dementia
Facial expression
Breathing pattern
Posture
Global
Proxy pain intensity
Functional
Dressing
Feeding oneself
Wheelchair-to-bed transfers
Pain Assessment Tool in Confused Observe nonverbal cues to assess pain in Quivering
Older Adults (PATCOA)193 acutely confused older adults Guarding
Frowning
Grimacing
Clenching jaws
Points to where it hurts
Reluctance to move
Vocalizations of moaning
Sighing
(continued )
Table 58
Pain Assessment Tools for the Cognitively Impaired or Nonverbal Patient/Resident (continued )
Tool Goal Dimensions/Parameters
Pain Assessment in Advanced Assess pain in patients with advanced Breathing

Dementia (PAINAD)194 Adapted dementia Negative vocalization
from DS-DAT187 and FLACC195 Facial expression
Body language
Consolability
Pain Assessment Checklist for Seniors Assess common and subtle behaviors in seniors Facial expressions
with Limited Ability to with advanced dementia Activity and body movements
Communicate (PACSLAC)196 Social/personality/mood indicators
Physiological indicators/eating and
sleeping/vocal behaviors
Abbey Pain Scale197 Assess pain in patients with late-stage dementia Vocalization
in nursing homes Facial expression
Change in body language
Behavioral change
Physiological change
Physical change
Table 59
Pain Assessment in Advanced Dementia (PAINAD)
Items 0 1 2
Breathing independent Normal Occasional labored breathing Noisy labored breathing

of vocalization Short period of Long period of hyperventilation
hyperventilation Cheyne-Stokes respirations
Negative vocalization None Occasional moan or groan Repeated troubled calling out
Low-level speech with a Loud moaning or groaning
negative or disapproving Crying
quality
Facial expression Smiling or inexpressive Sad Facial grimacing
Frightened
Frown
Body language Relaxed Tense Rigid
Distressed Fists clenched
Pacing Knees pulled up
Fidgeting Pulling or pushing away
Striking out
Consolability No need to console Distracted or reassured by voice Cannot be consoled, distracted,
or touch or reassured
Source: Warden et al. (2003), reference 194.
Instruments Used to Assess Pain in Nonverbal faces pain scale (FPS), the Iowa pain thermometer (IPT), and
or Cognitively Impaired Patients the 21-point box pain intensity scales are reliable and valid
in older adults with mild to moderate degrees of cognitive
The following are examples of pain scales and tools being used impairment. The IPT is a modied VDS that provides more
or tested in the non-verbal or cognitively impaired population. options between words and is aligned with a pain thermometer
to improve the conceptualization of pain.106 The horizontal 21-
Pain Intensity Scales point box scale has a row of 21 boxes labeled from 0 (no pain)
to 100 (pain as bad as it could be) in increments of ve; respon-
Recent research131,132,141,144,167,178180 indicates that the verbal dents indicate the box that best represents their pain.180 Cogni-
descriptor scale (VDS), the numeric rating scale (NRS), the tively impaired older adults are able to accurately complete one
Pain Assessment 115
or more pain intensity scales;131,144,179182 however, there is con- Although the DSDAT has been criticized for being too com-
cern about the reliability of their short-term pain reports.183 plex for routine nursing care,199 it has been revised194 and
Taylor & Herr131 recommend consideration of the FPS when offers potential for use in the palliative care setting.
repeat assessments are indicated. While the FPS is generally
favored for both cognitively intact and cognitively impaired The Assessment of Discomfort in Dementia Protocol (ADD).188
older adults, particularly minorities,119,131,132 it should be noted The ADD was developed to improve the recognition and
that the FPS may not clearly represent pain intensity only but treatment of pain and discomfort in patients with dementia
may represent a broader construct pain affect. 118,119,131 Because who cannot report their internal states, with the added goal of
the FPS is easy to use and easily understood, it can be offered decreasing inappropriate use of psychotropic medication
to minority older adults as an alternative if other validated administration. This protocol is based upon the assumption
tools, such as the VDS and NRS, are not usable by this popula- that behaviors associated with dementia are symptoms of
tion because of language barriers. Further research is needed unmet physiologic and/or nonphysiologic needs189(p.193). In
to determine whether preference for pain intensity scales is addition to the DSDAT items, the ADD protocol includes
inuenced by specic cognitive level and disability, gender, more overt symptoms, such as physical aggression, crying,
age, education, race, and ethnicity/culture. calling out, resisting care, and exiting behaviors. Implemen-
tation of the protocol when basic care interventions failed
Pain Behavior Tools to ameliorate behavioral symptoms resulted in signicant
decreases in discomfort, signicant increases in the use of phar-
Assessing pain in patients/residents who are nonverbal or cog- macologic and nonpharmacologic comfort interventions,188
nitively impaired and are unable to verbally self-report pain and improved behavioral symptoms.189,190 Use of a combined
presents a particular challenge to clinicians. There have been a assessment and treatment protocol appears promising for the
variety of instruments that have been used by chronic pain palliative care setting.
programs to systematically observe and measure the fre-
quency of pain behaviors,184186 but their use has been limited in Checklist of Nonverbal Pain Indicators (CNPI).144,145 Feldt145
the palliative care setting. Many health care providers and developed the CNPI specically for cognitively impaired eld-
researchers187197 have attempted to develop an easy-to-use yet ers. Modied from the University of Alabama-Birmingham
valid and reliable instrument for the assessment of pain in this Pain Behavior Scale for chronic pain patients, 184 the CNPI is a
vulnerable population (see Table 58). Herr and colleagues198 six-item tool that rates the absence or presence of the follow-
have performed an extensive and critical evaluation of many of ing behaviors, at rest and on movement: nonverbal vocaliza-
these existing tools (conceptualization, subject/setting, relia- tions (moans, groans, sighs), facial grimaces (furrowed brow,
bility and validity, administration/scoring methods, strengths/ narrowed eyes, clenched teeth), bracing (clutching or holding
weaknesses) with the intent of providing up-to-date informa- onto furniture or affected area), rubbing (massaging affected
tion to clinicians and researchers. The ndings from the Herr area), restlessness (constant or intermittent shifting of posi-
and colleagues review is available at http://prc.coh.org; it is tion, rocking, inability to keep still), and verbal complaint
anticipated that this web site will be updated regularly with the (saying ouch, dont touch me, thats enough, or cursing
most current data on pain assessment tools. Brief descriptions during movement). A summed score of the number of non-
of pain behavior tools follow. verbal pain indicators observed at rest and on movement is
calculated (total possible score = 012). It should be noted that
Discomfort Scale for Dementia of the Alzheimer Type (DSDAT). an increased score does not reect actual pain severity nor
Hurley and colleagues,187 based on behaviors observed by does it compare to other numeric scales measuring pain. In a
nurses, developed an objective scale for assessing discomfort study of elderly hip fracture inpatients in which 60% were
in nonverbal patients with advanced Alzheimers disease. The cognitively impaired, the CNPI demonstrated face validity and
investigators dened discomfort as a negative emotional interrater reliability (93% agreement by two gerontologic
and/or physical state subject to variation in magnitude in nurse practitioners), although internal consistency was low
response to internal or environmental conditions. The nega- ( = .54 and .64, at rest and movement).144 It was also reported
tive state to which they referred could be a condition other to be easy to use by nursing staff.64 Further research is needed
than pain, such as anguish and suffering. After testing for reli- on this tools validity, reliability, and appropriateness for cog-
ability, a scale of 9 items was retained from an original list of 26 nitively impaired patients.
behavioral indicators for discomfort. Items retained were
noisy breathing, negative vocalization, absence of a look of Non-communicative Patients Pain Assessment Instrument
contentment, looking sad, looking frightened, having a frown, (NOPPAIN).191 The NOPPAIN was developed as a nursing
absence of relaxed body posture, looking tense, and dgeting. assistantadministered instrument. Pain is observed at
Scoring of the DSDAT is based on evaluation of frequency, rest and on movement while nursing assistants perform resi-
intensity, and duration of the behaviors and may be cumber- dent care (bathing, dressing, transferring). Pain behaviors
some, requiring more training and education than is feasible are observed and pain intensity is scored using a pain ther-
or realistic for clinicians in hospital or long term care settings. mometer.
Pain Assessment for the Dementing Elderly (PADE).192 The the tool were derived: Social/Personality/Mood Indicators,
PADE was designed to help caregivers assess patient/resident Facial Expressions, Activity/Body Movement, and Physiologi-
behavior indicating pain. PADE items (n = 24) were devel- cal Indicators/Eating/Sleeping Changes/Vocal Behaviors. Pre-
oped after a literature review, interviews with nursing staff, liminary evidence suggests that the PACSLAC can differentiate
and observations of residents in a dementia unit. The PADE between pain and distress; scores were positively correlated
consists of three parts: physical (facial expressions, breathing, with cognitive impairment level. This tool may be appropriate
and posture); global (caregiver-rated pain); functional (activi- for use in the cognitively impaired palliative care patient. How-
ties of daily living). ever, further research is needed on clinicians who complete the
checklist while observing the patient in pain.
Patient Assessment Tool in Confused Older Adults (PATCOA).193
The PATCOA was evaluated in an initial study of 116 older adults Abbey Pain Scale.197 A tool based on Hurleys187 and Simon &
(60 to 80 years of age) undergoing orthopedic surgery.193 Malabars200 work was developed for use with residents with
Patients with Alzheimers disease were excluded from the study. end or late stage dementia unable to express their needs. Six
The PATCOA is an ordinal scale which includes 9 items of non- behavioral indicators were identied and scored with three
verbal pain cues rated as absent or present while the patient is at grades of severity (0 = absent through 3 = severe) for a total
rest; higher scores indicate higher pain intensity. A vertical VAS possible score of 18. Further testing is warranted to establish
was used in the study to meet the sensory needs of the older age reliability and validity.
group. Several nonverbal cues consistent with the CNPI144
included clenching jaws, frowning, grimacing, and vocalizations Proxy Pain Assessment in the Nonverbal or
of moaning and sighing. The internal consistency reliability was Cognitively Impaired Patient/Resident
below 0.70 which the investigators related to measurement of
multiple dimensions of the pain experience, low interrater reli- Just as the experience of pain is subjective,witnessing another
ability for several nonverbal cues, and the small number of in pain is a subjective experience.201 Without verbal validation
items in the tool. The study showed no signicant differences from the patient, the clinician must rely not only on behav-
between self-report of pain and demonstration of nonverbal ioral observations but on intuition and personal judgment. It
cues with acute confusion. However, this initial study was lim- is also particularly important to elicit the opinions of the indi-
ited by the predominance of a cognitively intact sample (only viduals closest to the patient, which are also subjective.
3.5% of the patients were confused and 12% at high risk for con- Nurses and other health care providers reect the difculty
fusion), making it too difcult to differentiate between nonver- of accurately assessing pain in nonverbal or cognitively impaired
bal cues of pain from acute confusion. Further reliability and patients in studies that show low concurrence between patients
validity testing of the PATCOA is planned. self-ratings of pain and clinicians ratings.202204 Other ndings
are equivocal, with some studies suggesting that family care-
The Pain Assessment in Advanced Dementia Scale (PAINAD).194 givers or signicant others accurately estimate the amount of
Warden, Hurley, & Volicer194 derived the PAINAD from the pain cancer patients experience89 and others proposing that fam-
behaviors and categories of the FLACC,195 a behavioral scale ily caregivers overestimate patients pain.205207 Bruera and col-
used to measure pain severity in postoperative children; leagues208 studied relatives and the nurses who cared for 60
the DS-DAT187; and pain descriptors of dementia by experi- unresponsive, dying patients. Both were asked to rate a patients
enced clinicians. The intent of the PAINAD is to simply mea- discomfort level, six observed behaviors (grimacing, groaning,
sure pain using a 010 score in noncommunicative individuals. shouting, touching or rubbing an area, purposeless movement,
This tool, tested on Caucasian male veteran residents with labored breathing), and the suspected reason for the discomfort.
advanced dementia (n = 19) who were not able to communi- Although the mean levels of perceived discomfort were similar,
cate their pain intensity, was compared with the DSDAT and relatives reported signicantly more observed behaviors and
two VAS by trained raters/expert clinicians, and was shown to more often indicated pain as a reason for discomfort than did
have good construct validity and reliability; internal consis- the nurse caregivers. According to Cohen-Manseld,209 relatives
tency was lower than what is desired for a new scale. Future of cognitively impaired nursing home residents are better able
research using this tool with a more diverse population (long- to interpret facial expressions and other pain behaviors if they
term care or palliative setting) is warranted. visit their loved ones at least once a week and have a close rela-
tionship. Additionally, higher levels of cognitive functioning
Pain Assessment Checklist for Seniors with Limited Ability were related to improved ability of relatives to assess pain and to
to Communicate (PACSLAC).196 Fuchs-Lacelle and Hadjis- higher levels of perceived pain.
tavropoulos196 developed and preliminarily evaluated an obser- The Edmonton Symptom Assessment System (ESAS) is a
vational tool to assess pain in severely demented seniors. To validated tool for use in the palliative care setting (Figure 54).
validate the tool, forty nurses were asked to recall patients under It was originally tested in 101 consecutive palliative care inpa-
their care who were experiencing pain, distress, and calm, and to tients; 83% of symptom assessments were done by nurses or
rate those experiences using the 60-item checklist, taking patients relatives.210 The ESAS is a brief and reproducible scale
approximately 5 minutes per administration. Four subscales of consisting of separate visual analog or numeric scales that
Pain Assessment 117
B
Figure 54. The Edmonton Symptom Assessment System (ESAS).
(A) Visual analog scale. (B) Graphic for self-report of pain locations.
(C) ESAS graph. (D) Edmonton Comfort Assessment Form (ECAF).
(E) ECAF graph. Instructions for the use of this multipart form are
presented in Appendix 51. Source: Reprinted with permission of
Carleen Brenneis, Capital Health, Edmonton, Alberta, Canada.)
C
118
D E
Pain Assessment 119
evaluate nine symptoms (pain, activity, nausea, depression, anx- arthritis and stroke with residual left-sided weakness. Paul has
iety, drowsiness, appetite, sensation of well-being, and shortness had difculty walking due to increased pain and disuse syn-
of breath). The tool is completed twice a day by palliative care drome due to his previous stroke. He recently fell and is now
unit patients, daily by hospice patients, and several times a week bedridden. It is extremely uncomfortable for him to be moved
by home care patients. If patients are unable to complete the from side to side because of the pain. He also has a stage II
form, a space is provided for the person completing the assess- pressure ulcer on his coccyx that seems to be worsening.
ment. If patients or residents are unresponsive and incapable of Paul describes his pain as achy, throbbing, and gnawing as
reporting their own pain (e.g., during the nal days of life), he points to his left hip and lower back. He rates his persis-
observer judgments of pain become necessary. In this situation, tent pain as a 4 (on a scale of 0 to 10), worsening to an 8 with
the main caregiver or nurse completes the Edmonton Comfort movement and activity. His pain has interfered with his abil-
Assessment Form (ECAF). The scores on either assessment can ity to sleep throughout the night and with his movement; his
be transferred to a graph to present a visual display of trends in appetite has decreased signicantly over the past month, and
a patients symptoms and discomfort. Lower scores designate he has had some constipation. Pauls family is concerned
better symptom control (the highest possible score is 900 on the about his taking pain medication because of fears of depend-
ESAS). Although the ESAS has been considered useful to display ence and side effects (constipation, sedation). Paul is a stoic
the incidence of symptoms, some investigators have found it to man who does not openly complain about pain to his wife,
be impractical in patients with a poor performance status.211 To daughters, nurses, or doctor. He does not want to be a burden
evaluate pain and other symptoms, an individualized approach on his family, and realizes his prostate cancer is incurable. He
may be a more appropriate practice than completing health- has accepted hospice care.
related checklists.
1.
What type of pain is Paul experiencing?
2.
How do you know he is having pain?
Implications for Treatment 3.
What pharmacological approaches would you suggest?
4.
What nonpharmacological strategies would you incor-
Although pain assessment in the nonverbal or cognitively
porate into the pain management plan?
impaired patient or resident presents a challenge to clinicians,
5. What other symptoms or side effects would you be
it should not pose a barrier to optimal pain management. If
concerned about?
patients are no longer able to verbally communicate whether
o]
they are in pain or not, the best approach is to assume that their
underlying disease is still painful and to continue pain inter-
ventions.212 Nonverbal patients should be empirically treated 9=
for pain if there is preexisting pain or evidence that an individ- case study
ual in a similar condition would experience pain.213 Likewise, June, a Cognitively Impaired Resident with Pain
palliative measures should be considered in nonverbal patients
June is an 87-year-old woman with a history of pneumonia,
with behavior changes potentially related to pain. Studies
degenerative joint disease, osteoporosis, diabetes,
demonstrate that pain behaviors are modied or decreased by
Alzheimers dementia, and myelodysplastic disorder who has
pain interventions and adjustments in analgesia.190,200
been admitted to your facility. June is extremely depressed.
The certied nursing assistants caring for June report that
she moans and groans when they bathe and change her (she
o]
is incontinent of bowel and bladder) and screams, Youre so
Summary
mean to me! She often is tearful, has a sad facial expression,
and is very restless.
In summary, multiple factors should be incorporated into the
assessment of the pain experience. The following case exam- 1. What kind of pain might June be having?
ples include some of the pain assessment techniques discussed 2. What can be done for her pain?
in this chapter and may prove benecial in applying this con- 3. Did she take any pain medication previously?
tent for nurse clinicians. 4. What does her family think?
5. How can her caregivers tell if the pain has been con-
trolled?
9=
o]
case study
Paul, a Hospice Patient with Pain
Paul is an 88-year-old man with prostate cancer metastatic to references
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Pain Assessment 125
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o] appendix 51
Instructions for Use of the Edmonton Comfort
Assessment Form (ECAF)
Pain Assessment 127
Pain Assessment 129
6o] Judith A. Paice and Perry G. Fine
Pain at the End of Life

How much I suffered last night . . . there are no words to express it, only howls of pain could do so.
Alphonse Daudet 1
Key Points Of the many symptoms experienced by those at the end of life,
Pain is highly prevalent in palliative care, yet the majority of pain is one of the most common and most feared.1a,2 However,
individuals can obtain good relief with available treatment options. this fear is largely unfounded because the majority of patients
An awareness of barriers to adequate pain care allows palliative with terminal illness can obtain relief. Nurses are critical
care nurses to assess for and to plan interventions to overcome these members of the palliative care team, particularly in providing
obstacles when caring for patients. Advocacy is a critical role of the pain management. The nurses role begins with assessment
palliative care nurse. and continues through the development of a plan of care and
Assessment of pain, including a thorough history and its implementation. During this process, the nurse provides
comprehensive physical exam, guides the development of the education and counsel to the patient, family, and other team
pharmacological and nonpharmacological treatment plan. members. Nurses also are critical for developing institutional
Pharmacological therapies include nonopioids, opioids, policies and monitoring outcomes that ensure good pain
coanalgesics, cancer therapies, and in some cases, interven- management for all patients within their palliative care pro-
tional techniques. gram. To provide optimal pain control, all health care profes-
Intractable pain and symptoms, although not common, must sionals must understand the frequency of pain at the end of
be treated aggressively. In some cases, palliative sedation may life, the barriers that prevent good management, the assess-
be warranted. ment of this syndrome, and the treatments used to provide
relief.
o]
Prevalence of Pain
The prevalence of pain in the terminally ill varies by diagnosis

and other factors. Approximately one third of persons who are
actively receiving treatment for cancer and two thirds of those
with advanced malignant disease experience pain.36 Individu-
als at particular risk for undertreatment include the elderly,
minorities, and women.7,8 Almost three quarters of patients
with advanced cancer admitted to the hospital experience pain
upon admission.9 In a study of cancer patients very near the
end of life, pain occurred in 54% at 4 weeks and 34% at 1 week
before death.10 In other studies of patients admitted to pallia-
tive care units, pain often is the dominant symptom, along
with fatigue and dyspnea.1a Children dying of cancer also are
at risk for pain and suffering.11
More recently, an attempt has been made to characterize
the pain experience of those with human immunodeciency
131
virus (HIV) disease, a disorder frequently seen in palliative

care settings.12,13 Headache, abdominal pain, chest pain, and Table 61
Barriers to Cancer Pain Management
neuropathies are the most frequently reported types of pain.
Lower CD4 cell counts and HIV-1 RNA levels are associated Problems related to health care professionals
with higher rates of neuropathy.14 Numerous studies have re- Inadequate knowledge of pain management
ported undertreatment of persons with HIV disease, including
Poor assessment of pain
those patients with a history of addictive disease.15,16
Concern about regulation of controlled substances
Unfortunately, there has been little characterization of the
pain prevalence and experience of patients with other life- Fear of patient addiction
threatening disorders. However, those working in palliative Concern about side effects of analgesics
care are well aware that pain frequently accompanies many of Concern about patients becoming tolerant to analgesics
the neuromuscular and cardiovascular disorders, such as mul-
tiple sclerosis and stroke, seen at the end of life.1719 Further- Problems related to the health care system
more, many patients in hospice and palliative care are elderly Low priority given to cancer pain treatment
and more likely to have existing chronic pain syndromes, such Inadequate reimbursement
as osteoarthritis or low back pain.20 Restrictive regulation of controlled substances
Additional research is needed to fully characterize the fre- Problems of availability of treatment or access to it
quency of pain and the type of pain syndromes seen in patients
at the end of life. This information will lead to improved detec- Problems related to patients
tion, assessment, and, ultimately, treatment. Unfortunately, pain Reluctance to report pain
continues to be undertreated, even when prevalence rates and Concern about distracting physicians from treatment of under-
syndromes are well understood. The undertreatment is largely lying disease
due to barriers related to health care professionals, the system, Fear that pain means disease is worse
and patients and their families.
Concern about not being a good patient
Reluctance to take pain medications

o] Fear of addiction or of being thought of as an addict
Barriers to Pain Relief
Worries about unmanageable side effects
Concern about becoming tolerant to pain medications
Barriers to good pain relief are numerous and pervasive.
Often, because of lack of education, misconceptions, or attitu- Adapted from References 222, 223.
dinal issues, these barriers contribute to the large numbers of
patients who do not get adequate pain relief.21,22 Careful exam-
ination of these barriers provides a guide for changing indi- Health Care Settings
vidual practice, as well as building an institutional plan within
the palliative care program to improve pain relief (Table 61). Lack of availability of opioids is pervasive, affecting not only
Most studies address the barriers associated with cancer pain. sparsely populated rural settings but also inner-city pharma-
Therefore, barriers facing individuals with other disorders cies reluctant to carry these medications.2931 Pain manage-
commonly seen in palliative care are not well characterized. ment continues to be a low priority in some health care settings,
One might suggest that these individuals are affected to an although the Joint Commission on Accreditation of Health-
even greater extent as biases may be more pronounced in those care Organizations (JCAHO) standards on pain management
with noncancer diagnoses. are helping to alleviate this problem.32,33 All JCAHO-certied
clinical settings must evaluate their procedures to ensure that
Health Care Providers pain is appropriately assessed, treated, and documented.
Fears related to opioids held by professionals lead to under- Patients and Families
use of these analgesics. Numerous surveys have revealed that
physicians, nurses, and pharmacists express concerns about Understanding these barriers will lead the professional to better
addiction, tolerance, and side effects of morphine and related educate and better counsel patients and their families.34 Since
compounds.23 Inevitability of pain is also expressed, despite these fears are pervasive, patients and family members or sup-
evidence to the contrary.24 Not surprisingly, lack of atten- port persons should be asked if they are concerned about addic-
tion to pain and its treatment during basic education is fre- tion and tolerance (often described as becoming immune to
quently cited.2427 Those providing care at the end of life the drug by laypersons).35 Studies have suggested that these fears
must evaluate their own knowledge and beliefs, including lead to undermedication and increased intensity of pain.36 Con-
cultural biases, and strive to educate themselves and col- cerns about being a good patient or belief in the inevitability
leagues.28 of cancer pain lead patients to hesitate in reporting pain.22,37,38 In
Pain at the End of Life 133
these studies, less educated and older patients were more likely adverse effects, to understand drugdrug and drugdisease
to express these beliefs.3941 Patients seeking active treatment interactions, and to educate patients and caregivers regarding
may believe that admitting to pain or other symptoms may appropriate medication usage. This will assure a comfortable
reduce their eligibility for clinical trials. process of dying for the well-being of the patient and for the
At the end of life, patients may need to rely on family mem- sake of those in attendance.
bers or other support persons to dispense medications. Each This section provides an overview of the most commonly
persons concerns must be addressed or provision of medica- used agents and some of the newer pharmaceutical agents
tion may be inadequate. Studies suggest that little concordance available in the United States for the treatment of unremitting
exists between patients and family members beliefs regard- and recurrent pain associated with advanced disease. The intent
ing analgesics.42,43 The interdisciplinary team is essential, with of this section is to arm the reader with a fundamental and
nurses, social workers, chaplains, physicians, volunteers, and practical understanding of the medications that are (or should
others providing exploration of the meaning of pain and pos- be) available in most contemporary care settings, emphasizing
sible barriers to good relief. Education, counseling, reframing, those therapies for which there is clear and convincing evi-
and spiritual support are imperative. Ersek22 provided an excel- dence of efcacy. For an extensive review of mechanisms of
lent review of the assessment and interventional approaches pain and analgesia, pharmacological principles of analgesics,
indicated for specic patient barriers. and more-detailed lists of all drugs used for pain control
throughout the world, the reader is referred to recent com-
prehensive reviews.13,5057 Since patients or family members are
o] not always aware of the names of their medications, or they
Effects of Unrelieved Pain may bring pills to the hospital or clinic that are not in their
original bottles, several web-based resources provide pictures
Although many professionals and laypersons fear that opioid that can assist the nurse in identifying the current analgesic
analgesics lead to shortened life, there is signicant evidence to regimen. These can be found at http://www.healthsquare.com/
the contrary. Inadequate pain relief hastens death by increas- drugmain.htm or http://www.drugs.com.
ing physiological stress, potentially diminishing immunocom-
petence, decreasing mobility, worsening proclivities toward Nonopioid Analgesics
pneumonia and thromboembolism, and increasing work of
breathing and myocardial oxygen requirements.44,45 Further- Acetaminophen
more, pain may lead to spiritual death as the individuals qual-
ity of life is impaired.46,47 Therefore, it is the professional and Acetaminophen has been determined to be one of the safest
ethical responsibility of clinicians to focus on and attend to analgesics for long-term use in the management of mild pain
adequate pain relief for their patients and to properly educate or as a supplement in the management of more intense pain
patients and their caregivers about opioid analgesic therapies. syndromes. It is especially useful in the management of nonspe-
cic musculoskeletal pains or pain associated with osteoarthri-
tis, but acetaminophen (also abbreviated as APAP) should be
o] considered an adjunct to any chronic pain regimen. It is often
Assessment and Common Pain Syndromes forgotten or overlooked when severe pain is being treated, so a
reminder of its value as a coanalgesic is warranted. However,
Comprehensive assessment of pain is imperative. This must be acetaminophens limited antiinammatory effect should be
conducted initially, regularly throughout the treatment, and considered when selecting a nonopioid. Reduced doses or avoid-
during any changes in the patients pain state.48 A randomized ance of acetaminophen is recommended in the face of renal
controlled trial using algorithms found that the comprehen- insufciency or liver failure, and particularly in individuals
sive pain assessment integral to these algorithms contributed with signicant alcohol use.58,59
to reduced pain intensity scores.49 For a complete discussion of
pain assessment, see Chapter 5. Nonsteroidal Antiinammatory Drugs
Nonsteroidal antiinammatory drugs (NSAIDs) affect analge-

o] sia by reducing the biosynthesis of prostaglandins, thereby
Pharmacological Management of Pain in inhibiting the cascade of inammatory events that cause,
Advanced and End-Stage Disease amplify, or maintain nociception. These agents also appear to
reduce pain by inuences on the peripheral or central nervous
A sound understanding of pharmacotherapy in the treatment of system independent of their antiinammatory mechanism of
pain is of great importance in palliative care nursing. First, this action. This secondary mode of analgesic efcacy is poorly
knowledge allows the nurse to contribute to and fully under- understood. The classic NSAIDs (e.g., aspirin or ibuprofen)
stand the comprehensive plan of care. Thorough understanding are relatively nonselective in their inhibitory effects on the
also allows the nurse to recognize and assess medication-related enzymes that convert arachidonic acid to prostaglandins.60 As
a result, gastrointestinal (GI) ulceration, renal dysfunction, dizziness, or other central nervous system effects of opioid
and impaired platelet aggregation are common.61,62 The analgesic therapy alone become burdensome.72 As with aceta-
cyclooxygenase-2 (COX-2) enzymatic pathway is induced by minophen, decreased renal function and liver failure are rela-
tissue injury or other inammation-inducing conditions.63 It tive contraindications for NSAID use. Similarly, platelet
is for this reason that there appears to be less risk of GI bleed- dysfunction or other potential bleeding disorders contraindi-
ing with short-term use of the COX-2 selective NSAIDs.64 cate use of the nonselective NSAIDs due to their inhibitory
However, although several studies demonstrate prolonged GI- effects on platelet aggregation, with resultant prolonged bleed-
sparing effects65, others suggest that these benets may not ing time. Proton pump inhibitors can be given to prevent GI
extend beyond 6 to 12 months, and there may be a risk of car- bleeding.73
diovascular events with prolonged COX-2 selective NSAID
use.6669 Additionally, because there is cross-sensitivity, patients Opioid Analgesics
allergic to sulfa-containing drugs should not be given cele-
coxib (Table 62). As a pharmacological class, the opioid analgesics represent the
The NSAIDs, as a class, are very useful in the treatment of most useful agents for the treatment of pain associated with
many pain conditions mediated by inammation, including advanced disease. The opioids are nonspecic insofar as they
those caused by cancer.61,70 There are insufcient data to deter- decrease pain signal transmission and perception throughout
mine whether the newly available COX-2 agents have any the nervous system, regardless of the pathophysiology of the
specic advantages over the nonselective NSAIDs in the man- pain.74 Moderate to severe pain is the main clinical indication for
agement of pain due to conditions such as metastatic bone pain. the opioid analgesics. Despite past beliefs that opioids were in-
The NSAIDs do offer the potential advantage of causing mini- effective for neuropathic pain, these agents have been found to be
mal nausea, constipation, sedation, or other effects on mental useful in the treatment of this complex pain syndrome.75 Other
functioning, although there is evidence that short-term mem- indications for opioid use include the treatment of dyspnea, use
ory in older patients can be impaired by them.71 Therefore, as an anesthetic adjunct, and as a form of prophylactic therapy
depending on the cause of pain, NSAIDs may be useful for in the treatment of psychological dependence to opioids (e.g.,
moderate to severe pain control, either alone or as an adjunct methadone maintenance for those with a history of heroin
to opioid analgesic therapy. The addition of NSAIDs to abuse).76,77
opioids has the benet of potentially allowing the reduction The only absolute contraindication to the use of an opioid
of the opioid dose when sedation, obtundation, confusion, is a history of a hypersensitivity reaction (rash, wheezing,
Table 62
Acetaminophen and Selected Nonsteroidal Antiinammatory Drugs
Drug Dose If Patient >50 kg Dose If Patient <50 kg
Acetaminophen* 4000 mg/24 h q 46 h 1015 mg/kg q 4 h (oral)

1520 mg/kg q 4 h (rectal)
Aspirin* 4000 mg/24 h q 46 h 1015 mg/kg q 4 h (oral)
1520 mg/kg q 4 h (rectal)
Ibuprofen* 2400 mg/24 h q 68 h 10 mg/kg q 68 h (oral)
Naproxen* 1000 mg/24 h q 812 h 5 mg/kg q 8 h (oral/rectal)
Choline magnesium 20003000 mg/24 h q 812 h 25 mg/kg q 8 h (oral)
trisalicylate*
Indomethacin 75150 mg/24 h q 812 h 0.51 mg/kg q 812 h
(oral/rectal)
Ketorolac 3060 mg IM/IV initially, then 0.251 mg/kg q 6 h
1530 mg q 6 h bolus IV/IM or short-term use
continuous IV/SQ infusion; only (35 days)
short-term use only (35 days)
Celecoxib 100200 mg PO up to b.i.d. No data available
*Commercially available in a liquid form.

Commercially available in a suppository form.
Potent antiinammatory (short-term use only due to gastrointestinal side effects).
Minimal platelet dysfunction.
Cyclooxygenase-2-selective nonsteroidal antiinammatory drug.
edema). Allergic reactions are almost exclusively limited to the competence, diminishing mobility, increasing the potential for
morphine derivatives. In the rare event that a patient describes thromboembolism, worsening inspiration and thus placing
a true allergic reaction, one might begin therapy with a low the patient at risk for pneumonia, and increasing myocardial
dose of a short-acting synthetic opioid (e.g., IV fentanyl) or try oxygen requirements.44,45 Furthermore, in a recent survey of
an intradermal injection as a test dose. The rationale for using a high-dose opioid use (299-mg oral morphine equivalents) in a
synthetic opioid (preferably one without dyes or preservatives hospice setting, there was no relationship between opioid dose
since these can cause allergic reactions) is that the prevalence and survival.80
of allergic reactions is much lower. If the patient does develop In a study of patients with advanced cancer, no reliable pre-
a reaction, using a low dose of a short-acting opioid will pro- dictors for opioid dose were identied.9 There is signicant
duce a reduced response for a shorter period of time when inter- and intraindividual variation in clinical responses to the
compared to long-acting preparations. various opioids, so in most cases, a dose-titration approach
Because misunderstandings lead to undertreatment, it is should be viewed as the best means of optimizing care. This
incumbent upon all clinicians involved in the care of patients implies that close follow-up is required to determine when
with chronic pain to clearly understand and differentiate the clinical end points have been reached. Furthermore, idiosyn-
clinical conditions of tolerance, physical dependence, addic- cratic responses may require trials of different agents to deter-
tion, pseudoaddiction, and pseudotolerance (Table 63). mine the most effective drug and route of delivery for any
It is also critically important for clinicians who are involved given patient. Table 64 lists more specic suggestions regard-
in patient care to be aware that titration of opioid analgesics to ing optimal use of opioids.
affect pain relief is rarely associated with induced respiratory Another factor that needs to be continually considered
depression and iatrogenic death.78,79 In fact, the most com- with opioid analgesics is the potential to accumulate toxic
pelling evidence suggests that inadequate pain relief hastens metabolites, especially in the face of decreasing drug clearance
death by increasing physiological stress, decreasing immuno- and elimination as disease progresses and organ function
deteriorates.81 Due to its neurotoxic metabolite, normeperi-
dine, meperidine use is specically discouraged for chronic
pain management.82 Propoxyphene (e.g., Darvocet N-100)
Table 63 also is discouraged for use in palliative care due to the active
Denitions metabolite, norpropoxyphene, its weak analgesic efcacy, and
the signicant acetaminophen dose found in some formula-
Addiction:
tions.48 As well, the mixed agonistantagonist agents, typied
Addiction is a primary, chronic, neurobiological disease, with by butorphanol, nalbuphine, and pentazocine, are not recom-
genetic, psychosocial, and environmental factors inuencing
mended for the treatment of chronic pain. They have limited
its development and manifestations. It is characterized by
efcacy, and their use may cause an acute abstinence syn-
behaviors that include one or more of the following:
impaired control over drug use, compulsive use, drome in patients who are otherwise using pure agonist opioid
continued use despite harm, and craving. analgesics.57
Physical Dependence: Morphine

Physical dependence is a state of adaptation that is
manifested by a drug-class-specic withdrawal syndrome that Morphine is most often considered the gold standard of opi-
can be produced by abrupt cessation, rapid dose reduction, oid analgesics and is used as a measure for dose equivalence
decreasing blood level of the drug, and/or administration of (Table 65).48 Although some patients cannot tolerate mor-
an antagonist. phine due to itching, headache, dysphoria, or other adverse
Tolerance: effects, common initial dosing effects such as sedation and
nausea often resolve within a few days.57 In fact, one should
Tolerance is a state of adaptation in which exposure to a drug
induces changes that result in a diminution of one or more of anticipate these adverse effects, especially constipation, nau-
the drugs effects over time. sea, and sedation, and prevent or treat appropriately (see
below). One metabolite of morphine, morphine-3-glucuronide
Pseudoaddiction: (M3G) is active and may contribute to myoclonus, seizures
Pseudoaddiction is the mistaken assumption of addiction in and hyperalgesia (increasing pain), particularly when patients
a patient who is seeking relief from pain. cannot clear the metabolite due to renal impairment.81,83 Side
effects and metabolic effects can be differentiated by the time
Pseudotolerance:
course. Side effects generally occur soon after the drug has had
Pseudotolerance is the misconception that the need for time to absorb, whereas there usually is a delay in metabolite-
increasing doses of drug is due to tolerance rather than
induced effects by several days. If adverse effects exceed the
disease progression or other factors.
analgesic benet of the drug, convert to an equianalgesic dose of
Adapted from references 223, 224. a different opioid. Because cross-tolerance is incomplete, reduce
the calculated dose by one third to one half and titrate upward
Table 64
Guidelines for the Use of Opioids
Clinical studies and experience suggest that adherence to some basic precepts will help optimize
care of patients who require opioid analgesic therapy for pain control:
Intramuscular administration is highly discouraged except in pain emergency states when
nothing else is available. (Subcutaneous delivery is almost always an alternative.)
Noninvasive drug delivery systems that bypass the enteral route (e.g., the transdermal and
the oral transmucosal routes for delivery of fentanyl for treatment of continuous pain and
breakthrough pain, respectively) may obviate the necessity to use parenteral routes for pain
control in some patients who cannot take medications orally or rectally.
Anticipation, prevention, and treatment of sedation, constipation, nausea, psychotomimetic
effects, and myoclonus should be part of every care plan for patients being treated with opioid
analgesics.
Changing from one opioid to another or one route to another is often necessary, so facility
with this process is an absolute necessity. Remember the following points:
Incomplete cross-tolerance occurs, leading to decreased requirements of a newly
prescribed opioid.
Use morphine equivalents as a common denominator for all dose conversions in order
to avoid errors.
Adapted from Reference 48.
Table 65
Approximate Equianalgesic Doses of Most Commonly Used Opioid Analgesics
Drug Parenteral Route Enteral Route
Morphine 10 mg 30 mg
Codeine 130 mg 200 mg (not recommended)
Fentanyl 50100 mcg OTFC available
Hydrocodone Not available 30 mg
Hydromorphone 1.5 mg 7.5 mg
Levorphanol 2 mg acute, 1 chronic 4 mg acute, 1 chronic
Methadone See text & Table 67 See text & Table 67
Oxycodone Not available 2030 mg
*Dose conversion should be closely monitored since incomplete cross-tolerance may occur.
Available in continuous and sustained-release pills and capsules, formulated to last 12 or 24 hours. Interindividual
variation in duration of analgesic effect is not uncommon, signaling the need to increase the dose or shorten the
dose interval.
Also available in transdermal and oral transmucosal forms, see package insert materials for dose
recommendations. OTFC = oral transmucosal fentanyl citrate.

Available as a continuous-release formulation lasting 24 hours.
These drugs have long half-lives, so accumulation can occur; close monitoring during rst few days of therapy is
very important.
**Available in several continuous-release doses, formulated to last 12 hours. Interindividual variation in duration of
analgesic effect is not uncommon, signaling the need to increase the dose or shorten the dose interval.
Fentanyl 100 mcg patch 4 mg IV morphine/h.
Adapted from References 48, 97, 98, 105, 107, 117.
based on the patients pain intensity scores (see Chapter 18 for The 24-hour, long-acting morphine capsule can be broken open
more information on the neurotoxicity of opioids).48 and the sprinkles placed in applesauce or other soft food.84
Morphines bitter taste may be prohibitive, especially if Oral morphine solution can be swallowed, or small volumes
immediate-release tablets are left in the mouth to dissolve. (0.51 mL) of a concentrated solution (e.g., 20 mg/mL) can be
When patients have dysphagia, several options are available. placed in the mouth of patients whose voluntary swallowing
capabilities are more signicantly limited.85,86 Transmucosal effects of body mass and temperature on absorption have not
uptake of morphine is slow and unpredictable due to its been studied. Some believe the changes in fat stores (seen with
hydrophilic chemical nature. In fact, most of the analgesic cachexia) alter the fat depot needed for absorption of this lipid-
effect of a morphine tablet or liquid placed buccally or sub- soluble compound. There is some suggestion that transdermal
lingually is due to drug trickling down the throat and the fentanyl may produce less constipation when compared to long-
resultant absorption through the GI tract. Furthermore, acting morphine.90 Further study is needed to conrm these
again due to the hydrophilic nature of morphine, creams ndings.
and patches that contain morphine provide little if any anal- Some patients experience decreased analgesic effects after
gesic effect. Another useful route of administration when only 48 hours of applying a new patch; this should be accom-
oral delivery is unreasonable is the rectal route.87 Commer- modated by determining if a higher dose is tolerated with
cially prepared suppositories, compounded suppositories, or increased duration of effect or a more frequent (q 48 h) patch
microenemas can be used to deliver the drug into the rectum change should be scheduled. As with all long-acting pre-
or stoma.88 Sustained-release morphine tablets have been parations, breakthrough pain medications should be made
used rectally, with resultant delayed time to peak plasma level available to patients using continuous-release opioids such as
and approximately 90% of the bioavailability achieved by oral the fentanyl patch. Several reports have documented the safe
administration. and effective use of subcutaneous fentanyl when the transder-
mal approach could no longer provide relief or side effects
Fentanyl occurred with other opioids.90 However, parenteral fentanyl is
commercially available in a 50-mcg/mL concentration. Higher
Fentanyl is a highly lipid soluble opioid that has been doses may preclude the subcutaneous route. When this occurs,
administered parenterally, spinally, transdermally, transmu- the intravenous (IV) route is warranted.
cosally, and by nebulizer for the management of dyspnea.70,89
Because of its potency, dosing is usually conducted in Oral Transmucosal Fentanyl Citrate. Oral transmucosal fen-
micrograms. tanyl citrate (OTFC or Actiq) is composed of fentanyl on an
applicator that patients rub against the oral mucosa to provide
Transdermal Fentanyl. Transdermal fentanyl (Duragesic), rapid absorption of the drug.93 This formulation of fentanyl is
often called the fentanyl patch, is particularly useful when particularly useful for breakthrough pain, described later in
patients cannot swallow, do not remember to take medications, this chapter. One example of OTFC use would be pain relief of
or have adverse effects to other opioids.90 Opioid-naive patients rapid onset or during a brief but painful dressing change.
should start with a 25-mcg/h patch (currently the lowest avail- Adults should start with the 200-mcg dose and monitor ef-
able dose) after evaluation of effects with immediate-release cacy, advancing to higher dose units as needed.94 Clinicians
opioids (Table 66). Patients should be monitored by a respon- must be aware that, unlike other breakthrough pain drugs, the
sible caregiver for the rst 24 to 48 hours of therapy until steady- around-the-clock dose of opioid does not predict the effective
state blood levels are attained. Fever, diaphoresis, cachexia, dose of OTFC. Pain relief can usually be expected in about 5
morbid obesity, and ascites may have a signicant impact on minutes after beginning use.95 Patients should use OTFC over
the absorption, predictability of blood levels, and clinical effects a period of 15 minutes because too-rapid use will result in
of transdermal fentanyl; thus, this form of administration more of the agent being swallowed rather than being absorbed
may not be appropriate in those conditions.91,92 The specic transmucosally. Any remaining partial units should be disposed
Table 66
Fentanyl Patch Instructions to Patients and Caregivers
1. Place patch on the upper body in a clean, dry, hairless area (clip hair, do not shave).
2. Choose a different site when placing a new patch, then remove the old patch.
3. If a skin reaction consistently occurs despite site rotation, spray inhaled steroid (intended for
inhalational use in asthma) over the area, let dry and apply patch (steroid creams prevent
adherence of the patch).
4. Remove the old patch or patches and fold sticky surfaces together, then ush down the toilet.
5. Wash hands after handling patches.
6. All unused patches (patient discontinued use or deceased) should be removed from
wrappers, folded in half with sticky surfaces together, and ushed down the toilet.
Adapted from References 90, 92.

of by placing under hot water or inserting the unit in a child- less costly than comparable doses of proprietary continuous-
resistant temporary storage bottle provided when the drug is release formulations, making it potentially more available for
rst dispensed. patients without sufcient nancial resources for more costly
drugs.
Oxycodone Despite these advantages, much is unknown about the
appropriate dosing ratio between methadone and morphine,
Oxycodone is a synthetic opioid available in a long-acting as well as the safest and most effective time course for conver-
formulation (OxyContin, generic long-acting oxycodone), as sion from another opioid to methadone.103 Early studies sug-
well as immediate-release tablets (alone or with acetamino- gested the ratio might be 1:1, and this appears to be true for
phen) and liquid. It is approximately as lipid soluble as mor- individuals without recent prior exposure to opioids. Newer
phine, but has better oral absorption.96 The equianalgesic data suggest the dose ratio increases as the previous dose of
ratio is approximately 2030:30 of oral morphine. Side effects oral opioid equivalents increases.104106 (Table 67) Further-
appear to be similar to those experienced with morphine; more, although the long half-life is an advantage, it also increases
however, one study comparing these two long-acting formula- the potential for drug accumulation before achieving steady-
tions in persons with advanced cancer found that oxycodone state blood levels, putting patients at risk for oversedation and
produced less nausea and vomiting.97 Despite signicant media respiratory depression. This might occur after 2 to 5 days of
attention to OxyContin and its role in opioid abuse, it does treatment with methadone. Close monitoring of these poten-
not appear to be inherently more addicting than other opi- tially adverse or even life-threatening effects is required.107
oids used in palliative care. Because of this attention, however, Myoclonus has been reported with methadone use.108 Finally,
several states have restricted the number of tablets that will be recent studies suggest high doses of methadone may lead to
distributed to an individual per month. QT wave changes (also called torsade de pointes), although it
is not clear whether this is due to the methadone or to preser-
Methadone vatives in the parenteral formulation.109,110
Methadone is metabolized primarily by CYP3A4, but also
Methadone has several characteristics that make it useful in by CYP2D6 and CYP1A2. As a result, drugs that induce CYP
the management of severe, chronic pain.98100 The half-life of enzymes accelerate the metabolism of methadone, resulting in
24 to 36 hours or longer allows prolonged dosing intervals.101 reduced serum levels of the drug. This may be demonstrated
Methadone may also bind as an antagonist to the N-methyl-d- clinically by shortened analgesic periods or reduced overall
aspartate (NMDA) receptor, believed to be of particular bene- pain relief. Examples of these drugs often used in palliative
t in neuropathic pain.102 Furthermore, methadone is much care include several antiretroviral agents, dexamethasone,
Table 67
Rotation to Methadone from Other Opioids in Oral Morphine Equivalents
Manfredi, P.L. &

Bruera E. & Sweeney, C.99 Houde, R.W.225 Gazelle, G. & Fine PG.226
If oral morphine < 100 mg, change to Conversion can be accomplished No recommendations for speed
methadone 5 mg every 8 hours. in one step using the following of rotation
If oral morphine > 100 mg, ratios: < 100-mg oral morphine3:1*
use 3-day rotation period: 3090 mg4:1* 101300 mg5:1
Day 1Reduce oral 91300 mg8:1 301600 mg10:1
morphine dose by 30%50% > 300 mg12:1 601800 mg12:1
and replace opioid using a 10:1 ratio. Higher doses require 8011000 mg15:1
Administer methadone every 8 hours. higher ratio. > 1001 mg20:1
Day 2Reduce oral morphine by Do not increase methadone
another 35%50% of original dose and dose more frequently than
increase methadone if pain is every 4 days.
moderate to severe.
Supplement with short-
acting opioids.
Day 3Discontinue oral morphine and
titrate methadone dose daily.
*Morphine: methadone
carbamazepine, phenytoin, and barbiturates.111 Drugs that cytopenia or painful lesions preclude the use of these routes.
inhibit CYP enzymes slow methadone metabolism, potentially Additionally, delivering medications via these routes can be
leading to sedation and respiratory depression. These include difcult for family members, especially when the patient is
ketoconazole, omeprazole, and SSRI antidepressants such as obtunded or unable to assist. Because the vagina has no
uoxetine, paroxetine, and sertraline.99,101 sphincter, a tampon covered with a condom or an inated uri-
Patients currently receiving methadone as part of a main- nary catheter balloon may be used to prevent early discharge
tenance program for addictive disease will have developed of the drug.116 As previously discussed, transdermal fentanyl is
cross tolerance to the opioids, and as a result, will require a useful alternative to these techniques.
higher doses than naive patients.112 Prescribing methadone Parenteral administration includes subcutaneous and IV
for addictive disease requires a special license in the United delivery (intramuscular opioid delivery is inappropriate in the
States. Therefore, prescriptions provided for methadone to palliative care setting). The IV route provides rapid drug deliv-
manage pain in palliative care should include the statement ery but requires vascular access, placing the patient at risk for
for pain. infection. Subcutaneous boluses have a slower onset and lower
peak effect when compared with IV boluses.48 Subcutaneous
Hydromorphone infusions may include up to 10 mL/h (although most patients
absorb 2 to 3 mL/h with least difculty).117,118 Volumes greater
Hydromorphone (Dilaudid) is a useful alternative when syn- than these are poorly absorbed. Hyaluronidase has been
thetic opioids provide an advantage. It is available in oral tablets, reported to speed absorption of subcutaneously administered
liquids, suppositories, and parenteral formulations, and it is drugs.
now also available in the United States in a long-acting formula- Intraspinal routes, including epidural or intrathecal deliv-
tion. As a synthetic opioid, hydromorphone provides an advan- ery, may allow administration of drugs, such as opioids, local
tage when patients have true allergic responses to morphine, or anesthetics, and/or -adrenergic agonists. A recent random-
when inadequate pain control or intolerable side effects occur. ized controlled trial demonstrated benet for cancer patients
Recent experience suggests that the metabolite hydromorphone- experiencing pain.119 However, the equipment used to deliver
3-glucuronide (H3G) may lead to the same opioid neurotoxicity these medications is complex, requiring specialized knowledge
seen with morphine metabolites: myoclonus, hyperalgesia, and for health care professionals and potentially greater caregiver
seizures.83,113 This is of particular risk in persons with renal burden. Risk of infection is also of concern. Furthermore, cost
dysfunction.114,115 is a signicant concern related to high-technology procedures.
See Chapter 22 for a review of high-technology procedures for
Other Opioids pain relief.
Codeine, hydrocodone, levorphanol, oxymorphone and tra- Preventing and Treating Adverse Effects
madol are other opioids available in the United States for treat- of Opioid Analgesics
ment of pain. Their equianalgesic comparisons are included in
Table 65. Constipation. Patients in palliative care frequently experi-
ence constipation, in part due to opioid therapy.1a,120 Always
Alternative Routes of Administration begin a prophylactic bowel regimen when commencing opi-
for Opioid Analgesics oid analgesic therapy. Avoid bulking agents (e.g., psyllium)
since these tend to cause a larger, bulkier stool, increasing
Many routes of administration are available when patients can desiccation time in the large bowel. Furthermore, debilitated
no longer swallow or when other dynamics preclude the oral patients can rarely take in sufficient fluid to facilitate the
route or favor other routes. These include transdermal, trans- action of bulking agents. Fluid intake should be encouraged
mucosal, rectal, vaginal, topical, epidural, and intrathecal. In whenever feasible. Senna tea and fruits may be of use. For a
a study of cancer patients at 4 weeks, 1 week, and 24 hours before more comprehensive review of bowel management, refer to
death, the oral route of opioid administration was continued Chapter 11.
in 62%, 43%, and 20% of patients, respectively. More than half of
these patients required more than one route of opioid adminis- Sedation. Excessive sedation may occur with the initial doses
tration. As patients approached death and oral use diminished, of opioids. If sedation persists after 24 to 48 hours and other
the use of intermittent subcutaneous injections and IV or sub- correctable causes have been identied and treated if possible,
cutaneous infusions increased.10 the use of psychostimulants may be benecial. These include
Thus, in the palliative care setting, nonoral routes of admin- dextroamphetamine 2.5 to 5 mg PO q morning and midday or
istration must be available. Enteral feeding tubes can be used to methylphenidate 5 to 10 mg PO q morning and 2.5 to 5 mg
access the gut when patients can no longer swallow. The size of midday (although higher doses are frequently used).121,122
the tube should be considered when placing long-acting mor- Adjust both the dose and timing to prevent nocturnal insom-
phine sprinkles, to avoid obstruction of the tube. The rectum, nia and monitor for undesirable psychotomimetic effects (such
stoma, or vagina can be used to deliver medication. Thrombo- as agitation, hallucinations, and irritability). Interestingly,
in a recent study, as-needed dosing of methylphenidate in can- administering high-dose infusions. (See Chapter 18 for more
cer patients did not result in sleep disturbances or agitation, specic information).
even though most subjects took doses in the afternoon and
evening.122 Modanil, a newer agent approved to manage nar- Pruritus. Pruritus appears to be most common with mor-
colepsy, has been reported to relieve opioid-induced sedation phine, in part due to histamine release, but can occur
with once-daily dosing.123 with most opioids. Fentanyl and oxymorphone may be less
likely to cause histamine release.48 Most antipruritus therapies
Respiratory Depression. Respiratory depression is rarely a clin- cause sedation, so this side effect must be viewed by the
ically signicant problem for opioid-tolerant patients in pain.48 patient as an acceptable trade-off. Antihistamines (such as
When respiratory depression occurs in a patient with advanced diphenydramine) are the most common rst-line approach
disease, the cause is usually multifactorial.78,79 Therefore, other to this opioid-induced symptom when treatment is indicated.
factors beyond opioids need to be assessed, although opioids Ondansetron has been reported to be effective in relieving
are frequently blamed for the reduced repirations. When unde- opioid-induced pruritus, but no randomized controlled stud-
sired depressed consciousness occurs along with a respiratory ies exist.129
rate less than 8/min or hypoxemia (O2 saturation < 90%) asso-
ciated with opioid use, cautious and slow titration of naloxone Coanalgesics
should be instituted. Excessive administration may cause abrupt
opioid reversal with pain and autonomic crisis. Dilute 1 ampule A wide variety of nonopioid medications from several phar-
of naloxone (0.4 mg/mL) in 10 mL of injectable saline (nal macological classes have been demonstrated to reduce pain
concentration 40 mcg/mL) and inject 1 mL every 2 to 3 minutes caused by various pathological conditions (Table 68). As a
while closely monitoring the level of consciousness and respi- group, these drugs have been called analgesic adjuvants, but
ratory rate. Because the duration of effect of naloxone is approx- this is something of a misnomer since they often reduce pain
imately 30 minutes, the depressant effects of the opioid will when used alone. However, under most circumstances, when
recur at 30 minutes and persist until the plasma levels decline these drugs are indicated for the treatment of severe neuro-
(often 4 or more hours) or until the next dose of naloxone is pathic pain or bone pain, opioid analgesics are used concomi-
administered.48 tantly to provide adequate pain relief.
Nausea and Vomiting. Nausea and vomiting are common Antidepressants

with opioids due to activation of the chemoreceptor trigger
zone in the medulla, vestibular sensitivity, and delayed gastric The mechanism of the analgesic effect of tricyclic antidepres-
emptying, but habituation occurs in most cases within several sants appears to be related to inhibition of norepinephrine
days.124 Assess for other treatable causes. In severe cases or and serotonin.130 Despite the absence of positive controlled
when nausea and vomiting are not self-limited, pharma- clinical trials in cancer pain or other palliative care pain condi-
cotherapy is indicated. The doses of nausea-relieving medi- tions, the tricyclic antidepressants are generally believed to
cations and antiemetics listed below are to be used initially provide relief from neuropathic pain.131 A recent consensus
but can be increased as required. See Chapter 9 for a thorough panel listed this category as one of ve rst-line therapies for
discussion of the assessment and treatment of nausea and neuropathic pain.132 Side effects often limit the use of these
vomiting. agents in palliative care. Cardiac arrhythmias, conduction
abnormalities, narrow-angle glaucoma, and clinically signi-
Myoclonus. Myoclonic jerking occurs more commonly with cant prostatic hyperplasia are relative contraindications to the
high-dose opioid therapy.125 If this should develop, switch to tricyclic antidepressants. The delay in onset of pain relief, from
an alternate opioid, especially if using morphine, since evi- days to weeks, may preclude the use of these agents for pain
dence suggests this symptom is associated with metabolite relief in end-of-life care. However, their sleep-enhancing and
accumulation, particularly in the face of renal dysfunc- mood-elevating effects may be of benet.133 A newer, atypical
tion.83,108,113,126 A lower relative dose of the substituted drug antidepressant, venlafaxine, has been shown to reduce neuro-
may be possible, due to incomplete cross-tolerance, which pathy associated with cisplatin-induced neuropathy134 and fol-
might result in decreased myoclonus. Clonazepam 0.5 to 1 mg lowing treatment for breast cancer.135
PO q 6 to 8 hours, to be increased as needed and tolerated,
may be useful in treating myoclonus in patients who are still Anticonvulsants
alert, able to communicate, and take oral preparations.127
Lorazepam can be given sublingually if the patient is unable The older anticonvulsants, such as carbamazepine and clon-
to swallow. Otherwise, parenteral administration of diazepam azepam, relieve pain by blocking sodium channels.133 Often
is indicated if symptoms are distressing. Grand mal seizures referred to as membrane stabilizers, these compounds are very
associated with high-dose parenteral opioid infusions have useful in the treatment of neuropathic pain, especially those
been reported and may be due to preservatives in the solu- with episodic, lancinating qualities. Gabapentin is believed to
tion.128 Preservative-free solutions should be used when have several different mechanisms of action, including having
Table 68
Adjuvant Analgesics
Daily Adult
Starting Dose* Routes of
Drug Class (Range) Administration Adverse Effects Indications
Tricyclic Nortriptyline 1025 mg PO Anticholinergic Neuropathic

antidepressants Desipramine 1025 mg effects pain, such as
burning pain,
poor sleep
Anticonvulsants Clonazapam 0.51 mg hs, PO Sedation Neuropathic
bid or tid pain, such
Carbamazapine PO as shooting pain
100 mg q day or tid
Gabapentin 100 mg tid PO
Corticosteroids Dexamethasone PO/IV/SQ Steroid psychosis, Cerebral edema,
220 mg q day; may dyspepsia spinal cord
give up to 100 mg IV compression, bone
bolus for pain crises pain, neuropathic
Prednisone 1530 mg tid, qid PO pain, visceral pain
Local anesthetics Mexiletine 150 mg tid PO Lightheadedness, Neuropathic pain
Lidocaine 15 mg/kg hourly IV or SQ infusion arrhthymias
N-Methyl-D-aspartate Dextromethorphan, PO Confusion Neuropathic pain
antagonists effective dose unknown
Ketamine (see Pain Crises) IV
Bisphosphonates Pamidronate 6090 mg IV infusion Pain are Osteolytic bone
over 2 h every 24 wk pain
Calcitonin 25 IU/day SQ/nasal Hypersensitivity reaction, Neuropathic pain,
nausea bone pain
Capsaicin 0.0250.075% Topical Burning Neuropathic pain
Baclofen 10 mg q day or qid PO Muscle weakness,
cognitive changes
Calcium channel Nifedipine 10 mg tid PO Bradycardia, Ischemic pain,
blockers hypotension neuropathic pain,
smooth muscle
spasms with pain
*Pediatric doses for pain control not well established.

Adapted from References 132, 133, 135137, 142152.
NMDA antagonist and other analgesic activities. The analgesic Corticosteroids

doses of gabapentin reported to relieve pain in non-end-of-life
pain conditions ranged from 900 to 3600 mg/day in divided Corticosteroids inhibit prostaglandin synthesis and reduce
doses.136,137 A common reason for inadequate relief is failure to edema surrounding neural tissues.142 This category of drug is
titrate upward after prescribing the usual starting dose of particularly useful for neuropathic pain syndromes, includ-
100 mg po three times daily. Additional evidence supports the ing plexopathies and pain associated with stretching of the
use of gabapentin in neuropathic pain syndromes seen in liver capsule due to metastases.142,143 Corticosteroids are also
palliative care, such as thalamic pain, pain due to spinal cord highly effective for treating bone pain due to their antiin-
injury, cancer pain, along with restless leg syndrome.138140 flammatory effects, as well as relieving malignant intestinal
Withdrawal from gabapentin should be gradual to prevent obstruction.144 Dexamethasone produces the least amount of
possible seizures.141 Other anticonvulsants have been used mineralocorticoid effect, leading to reduced potential for
with success in treating neuropathies, including lamotri- Cushings syndrome. Dexamthasone is available in oral, IV,
gine, levetiracetam, tiagabine, topiramate, and zonisamide, subcutaneous, and epidural formulations. The standard dose is
yet no randomized controlled clinical trials are currently 16 to 24 mg/day and can be administered once daily due to the
available.132 long half-life of this drug.48 Doses as high as 100 mg may
be given with severe pain crises. IV bolus doses should be Calcitonin

pushed slowly, to prevent uncomfortable perineal burning and
itching. Subcutaneous calcitonin may be effective in the relief of neuro-
pathic or bone pain, although studies are inconclusive.161 The
Local Anesthetics nasal form of this drug may be more acceptable in end-of-life
care when other therapies are ineffective. Usual doses are 100
Local anesthetics work in a manner similar to the older anti- to 200 IU/day subcutaneously or nasally.
convulsants, by inhibiting the movement of ions across the
neural membrane.145 They are useful for relieving neuropathic Radiation Therapy and Radiopharmaceuticals
pain. Local anesthetics can be given orally, topically, intra-
venously, subcutaneously, or spinally.145 Mexiletine has been Radiotherapy can be enormously benecial in relieving pain
reported to be useful when anticonvulsants and other adju- due to bone metastases or other lesions.162,163 In many cases,
vant therapies have failed. Doses start at 150 mg/day and single-fraction external beam therapy can be used to facilitate
increase to levels as high as 900 mg/day in divided doses.146,147 treatment in debilitated patients.163 Goals of treatment should
Local anesthetic gels and patches have been used to prevent be clearly articulated so that patients and family members
the pain associated with needlestick and other minor proce- understand the role of this therapy. Radiolabeled agents such as
dures. Both gel and patch (Lidoderm) versions of lidocaine strontium-89 and samarium-153 have been shown to be effec-
have been shown to reduce the pain of postherpetic neuropa- tive at reducing metastatic bone pain.164166 Thrombocytopenia
thy.148 IV lidocaine at 1 to 5 mg/kg (maximum 500 mg) admin- and leukopenia are relative contraindications since strontium-
istered over 1 hour, followed by a continuous infusion of 1 to 89 causes thrombocytopenia in as many as 33% of those treated
2 mg/kg/hour has been reported to reduce intractable neuro- and leukopenia up to 10%.164 Because of the delayed onset and
pathic pain in patients in inpatient palliative care and home timing of peak effect, only those patients with a projected life
hospice settings.149 Epidural or intrathecal lidocaine or bupi- span of greater than 3 months should be considered for treat-
vacaine delivered with an opioid can reduce neuropathic ment. Patients should be advised that a transitory pain are is
pain.150 reported by as many as 10% of individuals treated, and addi-
tional analgesics should be provided in anticipation.
N-Methyl-d-Aspartate Antagonists
Chemotherapy
Antagonists to NMDA are believed to block the binding
of excitatory amino acids, such as glutamate, in the spinal Palliative chemotherapy is the use of antitumor therapy to
cord. Ketamine, a dissociative anesthetic, is believed to relieve relieve symptoms associated with malignancy. Patient goals,
severe neuropathic pain by blocking NMDA receptors (see performance status, sensitivity of the tumor, and potential
the section Pain Crisis, below). A recent Cochrane review toxicities must be considered.167 Examples of symptoms that
found insufcient trials conducted to determine safety and may improve with chemotherapy include hormonal therapy
efcacy in cancer pain.151 Routine use often is limited by in breast cancer to relieve chest wall pain due to tumor ulcera-
cognitive changes and other adverse effects. Oral compounds tion, or chemotherapy in lung cancer to relieve dyspnea.168
containing dextromethorphan have been tested. Unfortu-
nately, dextromethorphan was ineffective at relieving cancer Other Adjunct Analgesics
pain.152
Topical capsaicin is believed to relieve pain by inhibiting the
Bisphosphonates release of substance P. This compound has been shown to be
useful in relieving pain associated with postmastectomy syn-
Bisphosphonates inhibit osteoclast-mediated bone resorption drome, postherpetic neuralgia, and postsurgical neuropathic
and alleviate pain related to metastatic bone disease and pain in cancer.142 A burning sensation experienced by patients
multiple myeloma.153,154 Pamidronate disodium reduces pain, is a common reason for discontinuing therapy.
hypercalcemia, and skeletal morbidity associated with breast Baclofen is useful in the relief of spasm-associated pain.
cancer and multiple myeloma.155157 Dosing is generally re- Doses begin at 10 mg/day, increasing every few days.169 A gen-
peated every 4 weeks and the analgesic effects occur in 2 to 4 eralized feeling of weakness and confusion or hallucinations
weeks. Interestingly, a recent randomized, controlled trial of often occurs with doses above 60 mg/day. Intrathecal baclofen
pamidronate in men experiencing pain due to prostate cancer has been used to treat spasticity and resulting pain, primarily
failed to demonstrate any benet.158 Zoledronic acid is a newer due to multiple sclerosis and spinal cord injury, although a
bisphosphonate that has been shown to relieve pain due to case report describes relief from pain due to spinal cord
metastatic bone disease.159 It is somewhat more convenient injury.170,171
because it can be infused over a shorter duration of time. Clo- Calcium channel blockers are believed to provide pain relief
dronate and sodium etidronate appear to provide little or no by preventing conduction. Nifedipine 10 mg orally may be use-
analgesia.160 ful to relieve ischemic or neuropathic pain syndromes.172
o] Cognitivebehavioral therapy often includes strategies

Interventional Therapies to improve coping and relaxation, such as relaxation, guided
imagery, music, prayer, and reframing.177,179,180 In a randomized
In addition to previously discussed spinal administration of clinical trial of patients undergoing bone marrow transplanta-
analgesics, interventional therapies to relieve pain at end of tion, pain was reduced in those patients who received relaxation
life can be benecial, including nerve blocks, vertebroplasty, and imagery training and in those who received cognitive
radiofrequency ablation of painful metastases, procedures to behavioral skill development with relaxation and imagery.181
drain painful effusions and other techniques.48,173175 Few of Patients who received treatment as usual or those randomized to
these procedures have undergone controlled clinical studies. receive support from a therapist did not experience pain relief.
One technique, the celiac plexus block, has been shown to Physical measures, such as massage, reexology, heat, chiro-
be superior to morphine in patients with pain due to unre- practic and other techniques, produce relaxation and relieve
sectable pancreatic cancer.176 A complete review of these pro- pain.182186 In a study of massage in hospice patients, relaxation
cedures can be found in a variety of sources. Choosing one of resulted as measured by blood pressure, heart rate, and skin tem-
these techniques is dependent upon the availability of experts perature.187 A 10-minute back massage was found to relieve pain
in this area who understand the special needs of palliative care in male cancer patients.188 Rhiner and colleagues189 employed
patients, the patients ability to undergo the procedure, and a comprehensive nondrug program for cancer patients that
the patients and familys goals of care. included education; physical measures such as heat, cold, and
massage; and cognitivebehavioral strategies such as distraction
and relaxation. All therapies were rated as useful, with distraction
o] and heat scoring highest. More research is needed in the pallia-
Nonpharmacological Therapies tive care setting regarding nondrug therapies that might enhance
pain relief.
Nondrug therapies, including cognitivebehavioral tech-
niques and physical measures, can serve as adjuncts to anal-
gesics in the palliative care setting. This is not to suggest that o]
when these therapies work the pain is of psychological ori- Difcult Pain Syndromes
gin.177 The patients and caregivers abilities to participate
must be considered when selecting one of these therapies, The above therapies provide relief for the majority of
including their fatigue level, interest, cognition, and other patients (Table 69). Unfortunately, complex pain syn-
factors.178 dromes may require additional measures. These syndromes
Table 69
Guidelines for Pain Management in Palliative Care
Sustained-release formulations and around-the-clock dosing should be used for continuous pain syndromes.
Immediate-release formulations should be made available for breakthrough pain.
Cost and convenience (and other identied issues inuencing compliance) are highly practical and important matters that should be
taken into account with every prescription.
Anticipate, prevent, and treat predictable side effects and adverse drug effects.
Titrate analgesics based on patient goals, requirements for supplemental analgesics, pain intensity, severity of undesirable or
adverse drug effects, measures of functionality, sleep, emotional state, and patients/caregivers reports of impact of pain on quality
of life.
Monitor patient status frequently during dose titration.
Discourage use of mixed agonistantagonist opioids.
Be aware of potential drugdrug and drugdisease interactions.
Recommend expert pain management consultation if pain is not adequately relieved within a reasonable amount of time after
applying standard analgesic guidelines and interventions.
Know the qualications, experience, skills, and availability of pain management experts (consultants) within the patients community
before they may be needed.
These basic guidelines and considerations will optimize the pharmacologic management of all patients with pain, particularly those in
the palliative care setting.
Adapted from References 48, 51, 223.

include breakthrough pain, pain crises, and pain control instance, a patient who is taking continuous-release morphine
in the patient with a past or current history of substance every 12 hours and whose pain breaks through after about 8
abuse. to 10 hours is experiencing end-of-dose failure. The dose
should be increased by 25% to 50%, if this is tolerated, or the
Breakthrough Pain dosing interval should be increased to every 8 hours.
Intermittent episodes of moderate to severe pain that occur in Bone Pain

spite of control of baseline continuous pain are common in
patients with advanced disease.190 Studies suggest that although Pain due to bone metastatis or pathological fractures can include
breakthrough pain in cancer patients at home is common, extremely painful breakthrough pain, often associated with
short-acting analgesics are frequently not provided and patients movement, along with periods of somnolence when the patient
do not take as much as is allowed.191,192 Mostly described in is at rest.172 In one study of cancer patients admitted to an inpa-
cancer patients, there is evidence that patients with other tient hospice, 93% had breakthrough pain, with 72% of the
pain-producing and life-limiting diseases commonly experi- episodes related to movement or weight bearing.196 Treatment of
ence breakthrough pains a few times a day, lasting moments bone pain includes the use of corticosteroids, bisphosphonates if
to many minutes.193,194 A recent prospective study of patients indicated, radiotherapy or radionuclides if consistent with the
with noncancer diagnoses at end of life experienced an average goals of care, long-acting opioids, along with short-acting opi-
of 5 breakthrough episodes per day (range 113), with 56% of oids for the periods of increasing pain.162 Vertebroplasty may sta-
these episodes occuring without any warning.195 The risk of bilize the vertabrae if tumor invasion leads to instability.173
increasing the around-the-clock or continuous-release anal-
gesic dose to cover breakthrough pains is that of increasing
Pain Crisis
undesirable side effects, especially sedation, once the more
short-lived, episodic breakthrough pain has remitted. Guide- Most nociceptive (i.e., somatic and visceral) pain is controllable
lines for categorizing, assessing, and managing breakthrough with appropriately titrated analgesic therapy.197 Some neuro-
pain are described below: pathic pains, such as invasive and compressive neuropathies,
plexopathies, and myelopathies, may be poorly responsive to
Incident Pain. Incident pain is predictably elicited by specic conventional analgesic therapies, short of inducing a nearly
activities. Use a rapid-onset, short-duration analgesic formu- comatose state. Widespread bone metastases or end-stage
lation in anticipation of pain-eliciting activities or events. Use pathological fractures may present similar challenges.172,198 When
the same drug that the patient is taking for baseline pain relief confronted by a pain crisis, the following considerations will be
for incident pain whenever possible. In 1998, OTFC was helpful:
approved specically for this indication in cancer patients.94
Clinical experience is being gained on its efcacy in other clin- Differentiate terminal agitation or anxiety from
ical situations. Adjust and titrate the breakthrough pain med- physically based pain, if possible. Terminal symp-
ication dose to the severity of anticipated pain or the intensity toms unresponsive to rapid upward titration of an
and duration of the pain-producing event. Past experience will opioid may respond to benzodiazepines (e.g.,
serve as the best prescriptive guide. diazepam, lorazepam, midazolam).
Make sure that drugs are getting absorbed. The only
Spontaneous Pain. Spontaneous pain is unpredictable and not route guaranteed to be absorbed is the IV route.
temporally associated with any activity or event. These pains Although invasive routes of drug delivery are to be
are more challenging to control. The use of adjuvants for avoided unless necessary, if there is any question
neuropathic pains may help to diminish the frequency and about absorption of analgesics or other necessary pal-
severity of these types of pain (see Table 68). Otherwise, liative drugs, parenteral access should be established.
immediate treatment with a potent, rapid-onset opioid anal- Preterminal pain crises that respond poorly to basic
gesic is indicated. approaches to analgesic therapy merit consultation
with a pain management consultant as quickly as
End-of-Dose Failure. End-of-dose failure describes pain that possible. Radiotherapeutic, anesthetic, or neuroab-
occurs toward the end of the usual dosing interval of a regu- lative procedures may be indicated.172
larly scheduled analgesic. This results from declining blood
levels of the around-the-clock analgesic before administration Management of Refractory Symptoms
or uptake of the next scheduled dose. Appropriate questioning at the End of Life
and use of pain diaries will assure rapid diagnosis of end-of-
dose failure. Increasing the dose of around-the-clock medica- Sedation at the end of life is an important option for patients
tion or shortening the dose interval to match the onset of this with intractable pain and suffering. The literature describing the
type of breakthrough pain should remedy the problem. For use of sedation at the end of life, however, is largely anecdotal
Pain Control in People with Addictive Disease

Table 610
Protocol for Using Ketamine to Treat a Pain Crisis
The numbers of patients entering palliative care with a current
1. Bolus: ketamine 0.1 mg/kg IV. Double the dose if no or past history of addictive disease are unknown, yet thought
clinical improvement in 5 minutes. Repeat as often as to be signicant.13,206 As approximately one third of the U.S.
indicated by the patients response. Follow the bolus with population has used illicit drugs, it would logically follow that
an infusion. Decrease opioid dose by 50%. some of these individuals will require palliative care. In one
2. Infusion: ketamine 0.015 mg/(kg/min) IV (about 1 mg/min uncontrolled survey of people with cancer or HIV, more than
for a 70 kg individual). Subcutaneous infusion is possible if half of those with HIV considered themselves to be recovering
IV access is not attainable. In this case, use an initial IM addicts.207 Therefore, all clinicians must be aware of the prin-
bolus dose of 0.30.5 mg/kg. Decrease opioid dose by 50%. ciples and practical considerations necessary to adequately care
3. It is advisable to administer a benzodiazapine for these individuals (see Chapter 38 for a complete discussion
(e.g., diazapam, lorazapam) concurrently to mitigate of care for the addicted patient at the end of life).
against the possibility of hallucinations or frightful dreams The underlying mechanisms of addiction are complex,
because moribund patients under these circumstances may including the pharmacological properties of the drug, person-
not be able to communicate such experiences.
ality and psychiatric disorders, as well as underlying genetic
4. Observe for problematic increases in secretions; treat with factors.208 Caring for these patients can be extremely challeng-
glycopyrrolate, scopolomine, or atropine as needed. ing. Thorough assessment of the pain and their addictive
disease is critical. Defensive behavior is to be expected, there-
Adapted from Reference 205.
fore the interview should begin with general questions about
the use of caffeine and nicotine and gradually become more
specic about illicit drug use.209 Patients should be informed
and refers to the use of opioids, neuroleptics, benzodiazepines, that the information will be used to help prevent withdrawal
and barbiturates.199201 The anesthetic propofol is also used.202 from these drugs, as well as ensure adequate doses of medica-
In the absence of controlled relative efcacy data, guidelines tions used to relieve pain.
for drug selection are empirical. Irrespective of the agent or Patients can be categorized in the following manner:
agents selected, administration initially requires dose titration (1) individuals who used drugs or alcohol in the past but are
to achieve relief, followed by ongoing therapy to maintain not using them now; (2) patients in methadone maintenance
effect. The depth of sedation necessary to control symptoms programs who are not using drugs or alcohol; (3) persons in
varies greatly. Once adequate relief is obtained, the parameters methadone maintenance programs but who continue to actively
for ongoing monitoring are determined by the goal of care. If use drugs or alcohol; (4) people using drugs or alcohol occasion-
the goal of care is to ensure comfort until death, the salient pa- ally, usually socially; and (5) patients who are actively abusing
rameters to monitor are those pertaining to comfort of the drugs.210,211 Treatment is different for each group.
patient, family, and staff. See Chapter 24 for additional discus- A frequent fear expressed by professionals is that they will
sion regarding palliative sedation. be duped, or lied to, about the presence of pain. One of the
Parenteral administration of ketamine is also useful for limitations of pain management is that pain, and all its com-
some patients with refractory pain at the end of life. Keta- ponents, cannot be proven. Therefore, expressions of pain
mine is a potent analgesic at low doses and a dissociative must be believed. As with all aspects of palliative care, an inter-
anesthetic at higher doses.203 Its use under conditions of ter- disciplinary team approach is indicated. This may include
minal crescendo-type pain may not only provide greatly inviting addiction counselors to interdisciplinary team meet-
improved pain relief but also allow a significant decrease in ings. Realistic goals must be established. For example, recovery
the dose of concurrent analgesics and sedatives, allowing in from addiction is impossible if the patient does not seek this
some cases increased interactive capability. Ketamine is usu- rehabilitation. The goal in that case may be to provide a struc-
ally reserved for terminal situations, due to rapidly develop- tured and safe environment for patients and their support
ing tolerance and psychotomimetic effects (hallucinations, persons. Comorbid psychiatric disorders are common, partic-
dysphoria, nightmares) that may occur with higher doses ularly depression, personality disorders, and anxiety disorders.
and drug accumulation (Table 610).204,205 Long-term IV or Treatment of these underlying problems may reduce relapse
subcutaneous use of ketamine (e.g., over 2 months) has been or aberrant behaviors and may make pain control more
reported to be effective in intractable pain states not relieved effective.212
by large doses of opioids and other adjuncts.205 Haloperidol The pharmacological principles of pain management in the
can be used to treat the hallucinations, and scopolamine may person with addictive disease are not unlike those in a person
be needed to reduce the excess salivation seen with this drug. without this history. Nonopioids may be used, including anti-
Research is needed regarding the efficacy of and adverse depressants, anticonvulsants, and other adjuncts. However,
effects associated with the use of ketamine for intractable psychoactive drugs with no analgesic effect should be avoided
pain. in the treatment of pain. Tolerance must be considered;
thus, opioid doses may require more rapid titration and may be
higher than for patients without previous exposure to opioids.213 Table 611
Outcome Indicators for Pain Control in the Palliative
Requests for increasing doses may be due to psychological suf-
Care Setting
fering, so this possibility must also be explored.
Consistency in the treatment plan is essential. Inconsis- Initial Evaluation: Pain that is not well controlled (patient
tency can increase manipulation and lead to staff frustration. self-report of 3 out of 10 or greater than the patients
Setting limits is a critical component of the care plan, and acceptable comfort level) is brought under control within
medication contracts may be indicated.214 In fact, one primary 48 hours of a patients initial evaluation.
clinician may be designated to handle the pharmacological Ongoing Care: Pain that is out of control is assessed and
management of pain. Prescriptions may be written for 1-week managed with effective intervention(s) within a
intervals if patients cannot manage an entire months supply. predetermined time frame in all patients (set an
The prescriptions may be delivered to one pharmacy to reduce appropriate time limit).
the potential for altered prescriptions or prescriptions from Terminal Care: No patient dies with pain out of control.
multiple prescribers. Writing out the number for the dose and Adverse Effects: Analgesic adverse effects and side effects
the total number of tablets will prevent alterations of the pre- are prevented or effectively and quickly managed in all
scription (e.g., increasing the number of tablets from 10 to patients
100). Use long-acting opioids whenever possible, limiting the
Adapted from References 218, 219.
reliance upon shortacting drugs.209 Avoid bolus parenteral
administration, although at the end of life, infusions can be
effective and diversion limited by keeping no spare cassettes or
bags in the home. Weekly team meetings provide a forum to
establish the plan of care and discuss negative attitudes regard-
Documentation is also essential to ensure continuity of
ing the patients behavior. Family meetings may be indicated,
care. Recommendations for documentation in the medical
particularly if they are also experiencing addictive behaviors.
record include the following:
Withdrawal from drugs of abuse must be prevented or min-
imized. These may include cocaine, benzodiazepines, and even Initial assessment, including findings from the
alcohol. Alcoholism in palliative care has been underdiag- comprehensive pain assessment; the current pain
nosed.215 Thus, a thorough assessment of recreational drug management regimen; prior experience with pain
use, including alcohol, must be conducted. This provides evi- and pain control; patient and caregiver under-
dence for adherence to the treatment plan.216 Urine toxicology standing of expectations and goals of pain man-
studies may be necessary. An excellent monograph detailing agement; elaboration of concerns regarding
the clinical use of urine toxicology can be found at www. opioids; and a review of systems pertinent to anal-
familydocs.org. Another resource is the Fast Fact Urine Drug gesic use, including bowels, balance, memory,
Testing for Opioids and Marijuana available at http://www.eperc. function, etc.219
mcw.edu. Interdisciplinary progress notes, including ongoing
Patients in recovery may be extremely reluctant to consider findings from recurrent pain assessment; baseline
opioid therapy. Patients may need reassurance that opioids can pain scores; breakthrough pain frequency and
be taken for medical indications, such as cancer or other ill- severity with associated causes and timing of
nesses. If patients currently are treated in a methadone mainte- episodes; effect of pain and pain treatment on
nance program, continue the methadone but add another opioid function, sleep, activity, social interaction, mood,
to provide pain relief. Communicate with the program to ensure etc.; types and effects (outcomes) of intervention,
the correct methadone dose. Nondrug alternatives may also be including adverse effects (bowel function, seda-
suggested. An excellent resource for information about addiction tion, nausea/vomiting assessments); documenta-
treatment is http://www.opiateaddictionrx.info. tion of specific instructions, patient /caregiver
understanding, and compliance; and patient /
caregiver coping.219
o] Comprehensive strategies to improve pain outcomes in
Nursing Interventions: Outcomes the hospice setting have included improving professional
and Documentation education, developing policies and procedures, enhancing
pain documentation, and instituting other performance-
Quality-improvement measures to relieve pain in the palliative improvement measures.217,218,220,221 These have resulted in
care setting include setting outcomes, developing strategies to reduction of pain-intensity scores and other changes. More
maintain or meet these outcomes, and then evaluating effective- research is needed in the development of quality-improvement
ness.217,218 Some suggested goals and outcome measures that can strategies that most accurately reect the needs of patients and
be used in each patients care plan are listed in Table 611. families in palliative care settings.
9= o]
case study Conclusion
Ms. Matthews, a Patient with Pathological
Fracture of the Femur Pain control in the palliative care setting is feasible in the
majority of patients. For patients whose pain cannot be con-
Ms. Matthews is a 38-year-old woman who was diagnosed with
trolled, sedation is always an option. Understanding the barri-
a pathological fracture of the femur due to advanced breast
ers that limit relief will lead to improved education and other
cancer. Her husband is very supportive, although nancial dif-
strategies to address these obstacles. Developing comfort and
culties require that he work two jobs. She has two school-aged
skill with the use of pharmacological and nonpharmacological
children at home. The Palliative Care Consult Service (includ-
therapies will enhance pain relief. Quality improvement efforts
ing a nurse and a physician) was asked to see her on the inpa-
within a palliative care setting can improve the level of pain
tient oncology unit to assist in pain management, because she
management within that organization and ultimately the pain
could not tolerate lying at to receive radiotherapy treatments.
relief experienced by these patients. Together, these efforts will
A thorough pain assessment revealed minimal to moderate
reduce suffering, relieve pain, and enhance the quality of life of
(35/010 intensity scale) pain in the right femur at rest, with
those at the end of life.
severe (10+) sharp, shooting pain when lying at or weight
bearing. She denied other sites of pain. Oral hydrocodone 5 mg
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management for home care and hospice programs. [see com- treatment of pain. End-of-Life Physician Education Resource Cen-
ment]. Am J Hosp Palliat Care 2001;18:257263. ter 2002;http://www.eperc.mcw.edu (accessed October 21, 2004).
7o] Paula R. Anderson and Grace E. Dean
Fatigue
The deadening fatigue which invades the very bones of cancer patients is totally unlike even the most
profound fatigue experienced by a well person.M.J. Poulson1
Key Points Patients do not have the energy, words, or language that
The patient with fatigue symptomatology requires thorough would make doctors, nurses, and other health care profession-
ongoing assessment and intervention, just as with other symptoms als understand just how tired they feel.1 Fatigue is a devastat-
of chronic debilitating illness. ing symptom that deserves the same attention that pain and
Psychosocial factors such as depression, anxiety, and stress of life other well-recognized symptoms of chronic illness receive.
exhaust personal energy reserves, contributing to the Fatigue is the symptom that has the greatest potential for hin-
underestimation of fatigue. dering the optimism of patients that they will one day be well
Pharmacological as well as nonpharmacological measures to again.1
combat fatigue have met with encouraging results.
o]
Denitions of Fatigue
I sit down in a chair and cannot will myself to get up . . . I tell my

husband, If you want to eat dinner, then youll have to get it for
us, Im not doing it. He tells me how this has happened to both of
us, but I only see that Im the one who cannot function the way
that I used to.A patient
Fatigue is an example of a complex phenomenon that has been

studied by many disciplines but has no widely accepted deni-
tion.2 The discipline of nursing is no exception. Even within dif-
ferent specialties of nursing, there has been little agreement on a
denition of fatigue. In oncology, for example, patients perceive
fatigue differently depending on where in the disease trajectory
fatigue occurs. Fatigue is often the symptom that causes the
patient with an undiagnosed cancer to seek medical treatment.
Once diagnosed, the cancer patient experiences fatigue as a side
effect of treatment. The patient who has nished treatment and
is in recovery discovers a new normal level of energy. The
patient who has experienced a recurrence of cancer considers
fatigue to be as much an enemy as the diagnosis itself. Finally,
the patient who is in the advanced stages of cancer interprets
fatigue as the end of a very long struggle to be endured. It is not
surprising then that a unifying denition has not been adopted.
The National Comprehensive Cancer Network (NCCN)
Fatigue Practice Guidelines Panel, charged with synthesizing
155
research on fatigue to develop recommendations for care, as a complex, changing state of exhaustion that at times seems
denes fatigue as an unusual, persistent, subjective sense of to be a physical condition, at other times a mental state, and
tiredness related to cancer or cancer treatment that interferes still other times to be a combination of physical and mental
with usual functioning.3 This denition is similar to that of a tiredness.9 The childrens denition emphasizes a physical sen-
multiple sclerosis panel that dened fatigue as a subjective lack sation (weakness), whereas the adolescents denition accentu-
of physical and/or mental energy perceived by individuals that ated both physical and mental exhaustion. These researchers
interferes with usual and desired activities.4 While other deni- concluded that fatigue existed within the greater context of the
tions have been proposed, two key elements in most denitions childs developmental stage and that the developmental stage
appear to be the subjective perception as well as interference might have a greater impact when evaluating fatigue than has
with functioning.58 yet been appreciated.
As with adults, no universal denition for fatigue in chil- More recently, researchers identied three different types of
dren has been agreed upon, but two denitions were identied. fatigue in a study of pediatric oncology patients, 5 to 15 years of
Fatigue derived from a group of 7- to 12-year-old pediatric age: typical tiredness (normal ebb and ow of energy), treat-
oncology patients consisted of a profound sense of being ment fatigue (energy loss greater than replenishment), and
weak or tired, or of having difculty with movement such as shutdown fatigue (profound, sustained loss of energy).10 Addi-
using arms or legs, or opening eyes.9 In the same study, 13- to tional exploratory research is needed to conrm the ndings
18-year-old pediatric oncology patients fatigue was described of these pioneers in pediatric cancer fatigue.
Table 71
Prevalence and Populations at Risk
Populations at Risk Description and Prevalence Rates
Cancer Patients consistently report that fatigue is more distressing than other
symptoms, with prevalence rates ranging from 78%96%, depending on
type of treatment and stage of disease.12,24,6872 Prevalence rates for
survivor fatigue range from 17%, when strict ICD-10 diagnostic criteria
are applied, to as high as 80%, when less stringent criteria are applied.73,74
Cardiac Coronary artery disease (CAD) affects nearly 13 million Americans and
continues as the leading cause of death in the United States.75 Fatigue is
a signicant side effect of CAD.75,76,77
Chronic fatigue CFS has a prevalence rate of 0.52% in women and 0.29% in men in the
syndrome (CFS) United States.78
Chronic obstructive In the few studies that have examined fatigue in patients with COPD,
pulmonary disease fatigue is an extremely prevalent symptom, second only to dyspnea.79,80
(COPD)
End-stage renal Fatigue and tiredness are prevalent symptoms in ESRD. For patients
disease (ESRD) undergoing hemodialysis, the prevalence rate for fatigue ranges from
87%100%, and for peritoneal dialysis, the rate is 82%.81,82
HIV/AIDS Fatigue often precedes the diagnosis of HIV infection. For patients with
AIDS, the prevalence rates range from 43%70%.83
Multiple sclerosis Fatigue is common and one of the most disabling symptoms of multiple
(MS) sclerosis (MS). It has affected between 75% to 90% of these patients, and at
least half experience fatigue on a daily basis.84 Currently, there is no
pharmacological treatment that is widely accepted to treat this fatigue. In
patients with MS, fatigue can easily be misinterpreted as a cognitive
disturbance, a psychological effect, or as part of respiratorycardiovascular
symptoms that are prevalent within the MS disease process.85
Parkinsons Fatigue has not been well documented in PD. One study reported a
disease (PD) 44% prevalence rate.86 Two studies documented higher fatigue levels in
patients with PD compared with control subjects.86,87
Source: Adapted from Piper (2003), reference 88.

Fatigue 157
o] o]
Prevalence Pathophysiology
During my radiation treatment I remember sitting in my car in I had a dream that my sister wanted me to take a walk with her. In
the cancer center parking lot without moving for quite some the dream, I remember clearly that I told her that we would have to
time. I remember the social worker tapping on the window walk another time as I was too tired to go with her. It is really
and asking me if I needed help. I could only say, Please call my strange, that even in my dreams, Im fatigued.A patient
son to pick me up, I dont have the energy to put the car in
gear.A patient Models to explain the causes of fatigue have been developed by
different disciplines in the basic sciences and by clinicians.
Research in the palliative care arena has focused primarily on Table 72 represents a variety of theories, models, or frame-
adults.1113 One prospective study of fatigue compared works to explain cancer-related fatigue that have been
advanced cancer patients to age- and sex-matched controls. reported in the literature. The two most prominent theories
The control group had a moderate excess of women (57%), are presented in more detail below. While these models were
with 49% (48/98) who were overweight and 50% having at developed with the cancer patient in mind, the depletion model
least one concomitant medical problem, such as arthritis, air- may also be applied to end-stage renal disease and the central
ow limitation, or hypertension.12 Although both patients peripheral model may be applied to multiple sclerosis.
and controls complained of a degree of fatigue, the severity Anemia, a deciency of red blood cells or lack of hemoglo-
of symptoms in patients was much worse. The prevalence of bin that leads to a reduction in oxygen-carrying capacity of the
severe subjective fatigue (dened as a score on the fatigue blood, is an example of the depletion theory. Anemia is a com-
scale of greater than the 95th percentile of controls) was 75% mon occurrence in patients with advanced disease or those
in the advanced cancer group. In this patient group, there receiving aggressive therapy.19 Multiple studies evaluating
were a variety of cancer diagnoses (breast, lung, and prostate) recombinant erythropoietin in patients with end-stage renal
and many of the patients were also taking opioid medica- failure, orthopedic surgery, and those receiving chemotherapy
tions.12 for cancer have demonstrated an improvement in fatigue, exer-
Another relevant study, conducted by the World Health Or- cise capacity, muscle strength, and performance of daily activi-
ganization, included 1840 palliative care patients.14 The preva- ties.20 Although there is reliable evidence that fatigue can be
lence of nine symptoms (pain, nausea, dyspnea, constipation, caused by anemia,21 little is known about the relationship
anorexia, weakness, confusion, insomnia, and weight loss) was between the degree or rate of hemoglobin loss and the develop-
examined in seven palliative care centers from the United ment of fatigue. One study described results of a new ques-
States, Europe, and Australia. With the exception of moderate tionnaire that was tested on a sample of 50 patients with either
to severe pain, weakness was the most common symptom, solid tumors or hematological malignancies.22 The fatigue
reported by 51% of patients.14 subscale, a new addition to the Functional Assessment of
Cancer is only one of many diseases in which fatigue is a Chronic Illness Therapy Measurement System, was able to dis-
common symptom. Table 7-1 presents prevalence rates for a tinguish patients with a hemoglobin level greater than 12 g/dL
variety of common chronic illnesses. Of note, 11% to 25% of from those with a level less than 12 g/dL. Research on patients
patients present with chronic fatigue as their chief complaint with end-stage renal disease indicates no relationship between
in primary care settings.15 Of these, 20% to 45% will have a hematocrit and subjective fatigue, even though anemia is a
primary organic cause and 40% to 45% will have a primary major side effect of the disease.23,24 While one study demon-
psychiatric disorder diagnosed. The remaining patients will strated some association between subjective fatigue and ane-
either meet the CDC criteria for CFS or remain undiag- mia, it is by no means conclusive and suggests that further
nosed.15 research is needed.24
The amount of research conducted on the symptom of Recent studies have linked inammatory processes to cen-
fatigue has been increasing steadily over the past 2 decades.16 tral nervous system-mediated fatigue.2527 Proinammatory
However, the majority of this research has been conducted on cytokines may be released as part of the host response to the
adults. Fatigue research in children and adolescents has tumor or in response to tissue damage (from injury) or deple-
received little attention.17 The prevalence of fatigue in children tion of immune cells associated with cancer treatments.28 These
is difcult to gauge from the general lack of research, but one inammatory stimuli can signal the central nervous system
study in 75 school-aged children receiving cancer treatments (CNS) to generate fatigue, as well as changes in sleep, appetite
reported a prevalence rate of 50%.18 Fatigue was expressed by reproduction and social behavior.27
the children as being tired, not sleeping well, and not being The search for foundational causes of fatigue continues
able to do the things they wanted to do. More than half the because no one theory thoroughly explains the basis for fatigue
children were not as active as before the illness and reported in the patient with advanced disease. The search for such a
playing less. No studies on fatigue in children with advanced theory is complicated. Fatigue, like pain, is not only explained
cancer were identied. by physiological mechanisms, but must be understood as
Table 72
Fatigue Theories, Models, and Frameworks
Theory/Model/Framework Description
Accumulation hypothesis Accumulated waste products in the body result
in fatigue.
Depletion hypothesis Muscular activity is impaired when the supply of
substances such as carbohydrate, fat, protein,
adenosine triphosphate, and protein is not
available to the muscle. Anemia can also be
considered a depletion mechanism.
Biochemical and physiochemical Production, distribution, use, equalization, and
phenomena movement of substances such as muscle proteins,
glucose, electrolytes, and hormones may
inuence the experience of fatigue.
Central nervous system control Central control of fatigue is placed in the balance
between two opposing systems: the reticular
activating system and the inhibitory system,
which is believed to involve the reticular
formation, the cerebral cortex, and the
brain stem.
Adaptation and energy reserves Each person has a certain amount of energy
reserve for adaptation, and fatigue occurs when
energy is depleted. This hypothesis incorporates
ideas from the other hypotheses but focuses on
the persons response to stressors.
Psychobiological entropy Activity, fatigue, symptoms, and functional status
are associated based on clinical observations that
persons who become less active as a result of
disease or treatment-related symptoms lose
energizing metabolic resources.
Aistars organizing framework This framework is based on energy and stress
theory and implicates physiologic, psychologic,
and situational stressors as contributing to
fatigue. Aistar attempts to explain the difference
between tiredness and fatigue within Selyes
general adaptation syndrome.
Pipers integrated fatigue model Piper suggests that fatigue mechanisms
inuence signs and symptoms of fatigue.
Changes in biological patterns such as host
factors, metabolites, energy substrates, disease,
and treatment, along with psychosocial
patterns, impact a persons perception and lead
to fatigue manifestations. The fatigue
manifestations are expressed through the
persons behavior.
Attentional fatigue model The use of attentional theory is linked to
attentional fatigue. When increased requirements
or demands for directed attention exceed
available capacity, the person is at risk for
attentional fatigue.
Source: Barnett (1997), reference 89. Copyright 1997, with permission from Elsevier.
Fatigue 159
a multicausal, multidimensional phenomenon that includes asked if their energy had changed, and, if it had changed, how
physical, psychological, social, and spiritual aspects. As such, long it took to return to normal. Patients whose energy level
factors inuencing fatigue are beginning to be addressed. had not returned to normal were more frequently found to be
in the later stages of the disease. Additional research by Wang
and colleagues39 that examined fatigue severity and fatigue
o] interference in hematological malignancies, indicated that
Factors Inuencing Fatigue patients with acute leukemia reported more severe fatigue when
compared with chronic leukemia or non-Hodgkins lymphoma.
Keep talking to me and hold my hand . . . I know youre there and Their research also indicated that nausea was the clinical predic-
I want to open my eyes and talk with you, but I just dont have the tor of severe fatigue.
energy to keep my eyelids open.A patient As illustrated by the following case reports, patient percep-
tions may be inuenced by other symptoms.
Characteristics that may predispose patients with advanced
disease to develop fatigue have not been comprehensively
studied. Oncology research has placed importance on patient
characteristics in treatment-related fatigue. Table 73 provides
a list of factors that have been associated with cancer-related Table 73
fatigue. Several of these factors have been studied and are pre- Predisposing Factors in Developing Fatigue
sented in some detail below.
Personal Factors
Age is one factor that has been examined in several stud-
ies of treatment-related fatigue in oncology. The majority of Age (youth vs. aged)
completed research indicates that younger adult patients Marital status (home demands)
with cancer report more fatigue than older patients with Menopausal status
cancer.22,24 This suggests that reported fatigue may be influ- Psychosocial factors (depression, fear, anxiety,
enced by the developmental level of the adult. For example, unnished business, unresolved family/friend
young adults may have heavy responsibilities of balancing conicts, unmet goals)
career, marriage, and child-rearing, while older adults may Culture/ethnicity
be at the end of their careers or retired with empty nests.
Income/insurance
Additionally, the older adult often has more than one med-
Physical living situation
ical condition and may even attribute the fatigue to advanc-
ing age, thereby not viewing it as abnormal. These may Spiritual factors
partially explain why younger adults have reported fatigue Disease-Related Factors
more frequently.
Anemia
Psychological depression has been linked to patients with
cancer-related fatigue.2931 Depression and fatigue are two Stage of disease/presence of metastases
related concepts. Fatigue is part of the diagnostic criteria for Pain
depression,32 and depression may develop as a result of being Sleep patterns/interruptions
fatigued.33 While depression is less frequently reported than Permanent changes in energy new normal
fatigue, feelings of depression are common in patients with Continency
cancer, with a prevalence rate in the range of 20% to 25%.34,35
Cachexia
One study exploring correlates of fatigue found a fused relation-
ship between depression and fatigue. This research indicated Dyspnea
that fatigued women scored twice as high on the depression Treatment-Related Factors
scale as those who were not fatigued and also that depression
Radiation related side effects (skin reaction, urinary or bowel
was the strongest predictor of fatigue.36 Additionally, depres- changes, temporary altered energy level, temporary increase
sion and fatigue may coexist with cancer without having a in physical demands)
causal relationship, because each can originate from the same
Medication side effects (nausea, vomiting, diarrhea, weight
pathology.33,37 loss or gain, taste changes)
Recent information derived from the scientic literature
Permanent physiologic consequences
supports the notion that advanced stage of disease com-
(altered energy or sleep pattern)
pounds the level of fatigue. Evidence demonstrates that the
more advanced the cancer, the greater the occurrence of sub- Care Factors
jective fatigue.38 Fobair and colleagues38 interviewed 403 long- Number/cohesiveness of caregivers
term survivors of Hodgkins disease who had completed their Commitment of doctor/nurse (involvement and availability)
initial therapy between 1 and 21 years before. Patients were
9= with radiation pneumonitis. She was prescribed corticosteroid

case study treatment, and her symptoms, dyspnea, and fatigue improved
Mrs. Patterson, a Patient with Stage III Breast Cancer with therapy.
Fatigue in patients undergoing cancer treatment has been
Mrs. Patterson is a 65-year-old retired postal inspector. She
closely linked with other distressing symptoms, such as pain,
attends night school, taking economics and international
dyspnea, anorexia, constipation, sleep disruption, depression,
business classes, plays golf a couple of times a week, and has a
anxiety, and other mood states.4143 Research on patients with
rigorous walking routine for exercise. She was recently diag-
advanced cancer has demonstrated that fatigue severity was
nosed with stage III breast cancer, and had surgery and radio-
signicantly associated with similar symptoms.12
therapy. She participated in a fatigue study to help identify
Like patients with cancer, patients with end-stage renal dis-
physiological indicators of fatigue. At baseline and midradia-
ease on chronic dialysis complained of a high level of fatigue
tion treatment, her fatigue intensity was 0 or no fatigue.
that was associated with other symptoms.44 The other symp-
At the end of treatment, Mrs. Patterson rated her fatigue as
toms identied were headaches, cramps, itching, dyspnea, sleep
an 8, severe fatigue. She had been able to play golf 2 weeks
disruption (highest mean score), nausea, chest pain, and abdom-
before and had to cut her walking time from 45 minutes to
inal pain. However, there was no relationship found between
15 minutes. She was studying for a test and could not compre-
other symptoms and any of the demographic variables.
hend what she had read. When she sat and read, she would
One hundred patients with rheumatoid arthritis (RA) were
fall asleep. She used to watch her husband fall asleep while
asked to identify factors that contributed to their fatigue.45
reading shortly before he died. He had nonsmall-cell lung
Results indicated that the rheumatoid disease process itself
cancer and died 2 years ago. His tendency to fall asleep like
was the primary cause of fatigue, with specic mention of
that was incomprehensible to her until now.
joint pain. Disturbed sleep was the second most frequent fac-
At 2 months postradiation therapy, Mrs. Patterson rated
tor, and physical effort to accomplish daily tasks ranked third.
her fatigue as a 9. She was forcing herself to attend night
Patients with RA indicated that they had to exert twice the
classes, two evenings a week from 7 to 10 pm. When not in
effort and energy to accomplish the same amount of work.
school, she would go to bed between 8 and 9 pm and wake up
Another study of patients with RA reported that women expe-
in the morning between 5 and 6 am. She was also taking
rienced more fatigue than men.46 The authors explained this
212-hour naps every day. She started to play golf again once a
variance as a result of the female patients higher degrees of
week, but was exhausted after only nine holes. She continued
pain and poor quality of sleep.
to walk but not as far or as long as before. She received a B on
Various physical symptoms were also identied as affecting
her exam (previously a straight-A student), but felt her con-
fatigue in a study of 80 women with congestive heart failure.47
centration was improving.
Women were interviewed 12 months after hospitalization for
One month later, Mrs. Patterson was contacted by phone
heart failure. A second interview occurred 18 months later.
at home. She was obviously short of breath, but remarked
Sleep difculties, chest pain, and weakness accounted for a
that she had just crawled up the side of a hill where she had
unique variance in fatigue during the rst interview. By the sec-
been installing a sprinkler system for her owers. On further
ond interview, dyspnea was the only symptom that explained
discussion, she reported that her family and friends had been
the variance in fatigue level.47
commenting on her shortness of breath for weeks. She
Fatigue in children and adolescents with advanced cancer
never really gave it much thought, except that she was still
has not been addressed. However, research has begun on pedi-
quite fatigued.
atric oncology patients reports of factors inuencing their
o]
fatigue.9,48 In one study, for example, 7- to 12-year-old patients
with cancer viewed hospital noises, new routines, changing
Case Study Assessment sleep patterns, getting treatment, and low blood counts as con-
tributing factors to the development of fatigue.48 In the same
When considering postradiation patient assessment, this case study, 13- to 18-year-old patients reported that going for treat-
study illustrates the importance of evaluating symptoms and ment, noisy nurses and inpatient children, changes in sleep
obtaining analysis of the patients condition over time. At end position, boredom, being fearful or worried, and treatment
of treatment, the patient indicated a fatigue level at 8. Two side effects led to their fatigue. In another pediatric study on
months later, her self-rated fatigue advanced to a 9. At the end-of-life symptoms and suffering, parents related that 89%
3-month postradiation check, the patient experienced severe of their children experienced substantial suffering from fatigue,
dyspnea, yet she had not deduced that this experience was pain, or dyspnea. When asked whether treatment for these
other than a normal response to treatment. A thorough assess- symptoms was successful, parents indicated success in 27% of
ment and management of the fatigued patient is illustrated in those with pain and only 16% of those with dyspnea.49
the algorithm depicted in Figure 71.40 It succinctly describes Little research on factors inuencing fatigue in patients with
likely perpetrators of fatigue and potential management sce- advanced cancer has been conducted. However, results from
narios for medicine and nursing. Mrs. Patterson was encour- treatment-related fatigue research do give direction for assess-
aged to seek medical attention and was eventually diagnosed ment and management of fatigue in the palliative care setting.
Patients with Cancer-Related Fatigue
Evaluation of Fatigue
Assess characteristics or manifestations
Severity
Onset, duration, pattern and course
Exacerbating and palliative factors
Distress and impact
Manifestations may include
Lack of energy
Weakness
Somnolence
Impaired thinking
Mood disturbance
Assess related constructs
Overall quality of life
Symptom distress
Goals of care
Evaluation of Predisposing Factors and Etiologies

Physiologic
Underlying disease
Treatments
Intercurrent disease processes (e.g., infection, anemia,
electrolyte disturbance or other metabolic
disorder, neuromuscular disorder)
Sleep disorder
Possible polypharmacy
Psychologic
Mood disorder
Stress
Management of Fatigue
Establish reasonable expectations
Plan to assess repeatedly
Correction of potential etiologies Symptomatic therapies
Depression or Pain Anemia Sleep disorder Other Pharmacological Nonpharma-

Antidepressants Exclude common causes of Sleep hygiene Conditions Treatment cological
Selective anemia. Careful use of Correct fluids Treatment
Iron deficiency hypnotics Psychostimulants
serotonin and electrolytes Methylphen-
Bleeding Patient education
reuptake Replace idate
Hemolysis Exercise
inhibitors calcium, Pemoline
Nutritional deficiency Modify activity
Secondary amine thyroid or Dextroamphet-
Severe anemia and rest patterns
tricyclics corticosteroids. amine
Transfuse (sleep hygiene)
Bupropion Give oxygen.
Mild to moderate anemia Stress
Analgesics Treat infection. Low-dose
Consider epoetin alfa management and
Reduce or corticosteroids
10,000 U SQ 3 times/wk. cognitive therapy
eliminate Dexameth-
Evaluate after 4 weeks. Adequate
nonessential asone
If increase in hemoglobin hydration and
meds. Prednisone
is > 1 g/dL, continue therapy. nutrition
If increase in hemoglobin
is < 1 g/dL, increase dosage
to 20,000 U 3 times weekly. Fatigue nonresponsive to other interventions
If no response, discontinue Empiric trial of antidepressant
epoetin alfa. Selective serotonin reuptake inhibitors
Provide supplemental iron Secondary amine tricyclics
as needed. Bupropion
Empiric trial of amantadine
Figure 71. Algorithm for the evaluation and management of cancer-related fatigue.
(Sourc e: Portenoy RK, Itri LM. Cancer-related fatigue: guidelines for evaluation and manage-
ment. Oncologist 1999;4:5. Copyright 1999 AlphaMed Press. Reprinted with permission.)
161
o] naires developed for the adult patient with cancer may provide
Assessment a framework for use in pediatrics. Until then, a simple assess-
ment of fatigue severity may be incorporated.
They told me that I might experience fatigue. But I thought, who
cares about that, I have cancer. Now I know what they meant. I
could have never anticipated how completely consuming the fatigue o]
would be.A patient Management/Treatment
Fatigue assessment of the whole person remains paramount I fall into bed exhausted. I cant wait one minute longer or speak
and includes the consideration of the body as well as the mind one more sentence. But within a couple of hours, Im wide awake.
and spirit (Figure 71). When assessing fatigue, one may refer My eyes will not rest, my mind will not rest. Its horrible not being
to the current literature regarding pain assessment for assis- able to sleep when I know Im completely spent. What is wrong with
tance. In pain assessment, the patient is the one whose opinion me? I need to be knocked out so I can get some sleep.A patient
is most highly regarded. Pain is whatever the patient says it is;
so, too, it should be with fatigue. Caregiver or staff perceptions When considering palliative care, the management of fatigue
may be quite different from those of the person experiencing is extremely challenging. By its very denition, palliative care
fatigue. There is no agreement as to the perfect denition for may encompass a prolonged period before death, when a per-
fatigue; therefore, it is most efcient to use an individual son is still active and physically and socially participating in
patients denition or description of fatigue. This personal life, to a few weeks before death, when participatory activity
fatigue may include any reference to or decrease in energy, may be minimal. With fatigue interventions, the wishes of the
weakness, or feeling tired or wiped out. patient and family are paramount. One must consider man-
There are numerous methods of assessing fatigue. Many agement in the context of the extent of disease, other symp-
scales have been developed to measure fatigue in the adult, toms (pain, nausea, diarrhea, etc.), whether palliative treatment
with varying levels of research-related validity and reliability. is still in process, age and developmental stage, and the emo-
Current fatigue measurement tools include the Multidimen- tional place of the patient.
sional Assessment of Fatigue, the Symptom Distress Scale, the Interventions for fatigue have been suggested to occur at
Fatigue Scale, the Fatigue Observation Checklist, and a Visual two levels: managing symptoms that contribute to fatigue and
Analogue Scale for Fatigue.50 These scales are available for use the prevention of additional or secondary fatigue by maintain-
in research and may be used in the clinical area. One scale that ing a balance between restorative rest and restorative activity.53
has been used extensively in the oncology population is the Fatigue interventions have been grouped into two broad cate-
Piper Fatigue Scale.51 This questionnaire has 22 items that gories: medical interventions and nursing interventions.
measure four dimensions of fatigue: affective meaning, behav-
ioral/severity, cognitive/mood, and sensory. This scale mea- Medical Intervention
sures perception, performance, motivation, and change in
physical and mental activities.52 Pharmacological approaches to treat fatigue have been sparse
In clinical practice, however, a verbal rating scale may be with regard to palliative care (Table 75). Categories of phar-
the most efcient. Fatigue severity may be quickly assessed macological therapies that have been used in limited numbers
using a 0 (no fatigue) to 10 (extreme fatigue) scale. As with in this patient population are stimulants, antidepressants and
the use of any measure, consistency over time and a specic low-dose steroids.54 Methylphenidate, a psychostimulant, has
frame of reference are needed. During each evaluation, the been shown to improve quality of life when given to depressed,
same instructions must be given to the patient. For example, terminally ill patients. It has also been shown to counteract opi-
the patient may be asked to rate the level of fatigue for the past oid somnolence, enhance the effects of pain medication,
24 hours. improve cognition, and increase patient activity level.55,56 Appro-
Fatigue, as with any symptom, is not static. Changes take priate dosing for this drug is between 5 mg10 mg orally at
place daily and sometimes hourly in the patient with advanced breakfast and 5 mg at lunch daily. The elderly may require a
disease. As such, fatigue bears repeated evaluation on the part of downward dose adjustment.
the health care provider. One patient, noticing the dramatic Another stimulant that has been used in the past to treat
change in his energy level, remarked Have I always been this fatigue is Pemoline. Liver toxicities have caused concern with
tired? He seemed unsure whether there had ever been a time this drug, and, subsequently, its use tends to be avoided. Dextro-
when he did not feel overwhelmed by the impact of fatigue. The amphetamines are a potent CNS stimulant that may also be
imperative for palliative care nursing is simply to ask the patient used. They are quickly absorbed from the gastrointestinal tract
and continue to ask, while keeping in mind that the ultimate with high concentrations in the brain.
goal is the patients comfort. An example of a thorough assess- Antidepressants have shown effectiveness when a patient
ment of the symptom of fatigue is found in Table 74. experiences both fatigue and depression. Efcacy has been
Fatigue assessment tools for use in the pediatric population shown with both nortriptyline and amitriptyline.54 Corticos-
are in the developmental stages. Additionally, many question- teroids have been used to increase energy levels at a dose of
Fatigue 163
Table 74
Fatigue Assessment
Location: Where on the body is the fatigue located: Upper/lower extremities? All muscles of the
body? Mental/attentional fatigue? Total body fatigue?
Intensity/severity : Does the fatigue interfere with activities (work, role/responsibilities at home,
social, things the patient enjoys)?
Duration: How long does the fatigue last (minutes, hours, days)? Has it become chronic (more
than 6 months duration)? What is the pattern (wake up from a nights sleep exhausted, evening
fatigue, transient, unfading, are circadian rhythms affected)?
Aggravating factors: What makes it worse (rest, activity, other symptoms, environmental
heat, noise)?
Alleviating factors: What relieves it (a good nights rest, food, listening to music, exercise)?
Patients knowledge of fatigue: What meaning does the patient assign to the symptom of fatigue
(getting worse, disease progression, dying)?
Medications: Is the patient taking any medications that could cause the fatigue (for pain
or sleep)?
Physical exam based on subjective symptom: Is there anything obvious on exam that could
account for the fatigue (nerve damage, malnourished, dehydrated)?
Muscle strength: Tests to elicit muscle strength are available (Jamar grip strength, nerve
conduction studies).
General appearance: Often, there is nothing in a patients general appearance to indicate how
fatigued he or she is; however, some patients do exhibit signs such as appearing pale or having a
monotone voice, slowed speech, short of breath, obvious weight loss, dull facial expression.
Vital signs: Anything out of the ordinary to explain their fatigue (fever, low blood pressure,
weak pulse)?
Laboratory results: Oxygenation status (blood gases, hemoglobin, hematocrit), electrolytes,
other hormones such as thyroid?
Level of activity : Have usual activities changed?
Affect: What is the patients mood (anxious, depressed, at)?
about 20 mg40 mg/day. Prednisone has been shown to decrease Several investigators have reported the benets of a consis-
the degree of fatigue experienced in some patients. Results from tent exercise regime in breast cancer patients.6062 They have
one study indicated an increase in activity level when palliative found that exercise decreased perceptions of fatigue, and they
care patients were treated with methylprednisolone.57 The side indicated that those patients who exercised reported half the
effects that may occur with these drugs are always a concern. fatigue level of those not exercising. Whether these ndings
Anemia as a result of chemotherapeutic regimens has been can be generalized to palliative care is unknown.
the most responsive to intervention. Erythropoietin alpha has When attention-restoring interventions were used with
been critical in increasing hemoglobin levels to obtain the high- cancer patients, it was found that attention capacity was en-
est quality of life possible for cancer patients. Doses vary in tim- hanced and fatigue was reduced.63,64 These activities are based on
ing from 10,000 U subcutaneously given three times per week, a program that required patients to select and engage in a
to 40,000 U once a week, with a similar increase in hemoglobin favorite activity for 30 minutes three times a week. The use of this
level.58 In one study of 4382 anemic cancer patients, the highest technique seemed to provide restorative distraction and replace
quality of life was experienced when hemoglobin was main- boredom and understimulation. Included in the activities were
tained between 11 g13 g/L with the use of epoetin alfa.59 spending time in a natural environment, participating in
favorite hobbies, writing, shing, music, and gardening. Regard-
Nonpharmacological Nursing Interventions less of the limitations of the patients with advanced disease,
incorporation of some of these activities may prove helpful.
Historically, nurse clinicians and researchers have been the Another broad category for fatigue intervention includes
trailblazers in assessing and managing fatigue in the clinical taking advantage of every educational opportunity during the
setting. Research has been conducted on all of the fatigue man- advanced disease course. With education of both the patient
agement strategies listed below, but sample sizes have often and the family as a constant theme, every attempt should be
been small and homogeneous. Much more research is needed, made to forewarn of changes in disease progression, proce-
but the beginning evidence is encouraging (Table 76). dures, treatment, medication side effects, or scheduling. Even
Table 75
Pharmacologic Agents Used in Fatigue Management
Author Medication Diagnosis N Result
Bruera57 Methylprednisolone Palliative care 40 Increased activity

Bruera90 Methylphenidate Advanced cancer 48 Improved pain
Improved somnolence
Bruera91 Methylphenidate Advanced cancer pain 20 Improved cognition
MacLeod92 Methylphenidate Major depressive disorder 26 46% therapeutic response,
17.7 mg QD Hospice inpatients 7% signicant response
Myers93 Methylphenidate Brain tumor 30 Increased stamina,
10 mg bid energy, cognition, mood
Sarhill94 Methylphenidate Advanced cancer 11 Benecial effect on fatigue
Rammohan84 Modanil (Provigil) Multiple sclerosis 72 Signicantly
200 mg/day improves fatigue
Gillson95 Histamine phosphate/caffeine Multiple sclerosis 29 37% improvement
citrate transdermal patch in fatigue
Cleare96 Hydrocortisone 510 mg QD Chronic fatigue syndrome 32 Enhance mood, appear to
(limited use due to possible improve fatigue for limited
side effects) period of time
Crawford et al.59 Epoetin alfa Review of data from two 4382 Maximum improvement
community trials of anemic in QOL w/Hgb. 1113 g/dL
cancer patients
Schwartz et al.97 Exercise plus methylphenidate Patients w/melanoma 12 Appeared to reduce fatigue
20 mg SR Q am taking interferon (pilot) and increase cognitive function
Source: Adapted from Palliative Uses of Methylphenidate In Patients with Cancer: A Review, by M. Rozans, A. Dreisbach, J. Lertora, M. Kahn, J Clin Oncol 2001;
20: 338.98 Copyright 2001 by American Society of Clinical Oncology. Reprinted with permission.
a personnel change can be enough to impact the physical and patient and/or family to participate in disease-specic support
emotional energy reserves. Nurse-initiated and planned edu- groups, using the telephone or the Internet if unable to travel.
cational sessions with both the patient and family give a forum Individual counseling by professionals in nursing, social work,
in which to eld forgotten questions, reinforce nutritional or psychology are also helpful to many.
information, and together manage symptoms. Fatigue-management interventions need to be considered
Sleep disruption is a common problem encountered by the within the cultural context of the patient and family. For some
patient with advanced cancer. Sleep cycles may be negatively cultures, this may include only the nuclear family, whereas
affected by innumerable internal and external factors, whose in other cultures, there are ritual or extended relatives. When
effect should not be underestimated. Simple changes in envi- information is shared and decisions are made regarding inter-
ronment and habits may improve sleep distress tremendously. vention, the family is acknowledged formally, and care should
One study evaluated the feasibility of sleep interventions while be made inclusive of these variations.67
patients underwent adjuvant chemotherapy.65 Components of Management of and interventions for fatigue in pediatric
the intervention included sleep hygiene, relaxation therapy, oncology in general have not yet been dened. Additionally, what
stimulus control and sleep-restriction techniques. For those helps the pediatric patient with fatigue depends on his or her
situations where pharmacological intervention is necessary, a developmental stage.9 Children up to 13 years old with cancer
thorough assessment of past and current sleep habits is essen- view fatigue-alleviating factors as taking a nap or sleeping, having
tial. The temporary use of sleep medications such as Ambien visitors, and participating in fun activities. Adolescent patients
(zolpidem tartrate) may be used to minimize sleep depriva- with cancer add their perceptions of what helps their fatigue by
tion enough to energize the patient into trying nonpharmaco- including going outdoors, protracted rest time, keeping busy,
logical measures. medication for sleep, physical therapy, and receiving blood trans-
Psychosocial techniques are the last broad category of fusions.9 Regardless of the perceptions of the contributing or
fatigue intervention. One review of 22 studies of psychosocial alleviating factors in the younger patient, knowing the results of
treatment with cancer patients reported ndings that indicate this research emphasizes the importance of including all mem-
that psychosocial support and individualized counseling have a bers of the team (patient, parent, and staff ) in designing
fatigue-reducing effect.66 If deemed appropriate, encourage the approaches to intervene in solving the problem of fatigue.
Fatigue 165
Table 76
Nursing Management of Cancer-Related Fatigue
Problem Intervention Rationale
Lack of information/lack Explain complex nature of fatigue and importance Preparatory sensory information reduces
of preparation of communication with health care professionals. anxiety and fatigue.
Explain causes of fatigue in advanced cancer: Realistic expectations decrease distress
Fatigue can increase in advanced disease. and decrease fatigue.
Cancer cells can compete with body for
essential nutrients.
Palliative treatments, infection, and fever increase
bodys need for energy.
Worry or anxiety can cause fatigue as well as
depression, sadness, or tension.
Changes in daily schedules, new routines,
or interrupted sleep schedules contribute to the
development of fatigue.
Prepare patients for all planned activities of daily living
(eating, moving, bath).
Disrupted rest/sleep patterns Establish or continue regular bedtime and awakening. Curtailing time in bed, unless absolutely
Obtain as long sleep sequences as possible, necessary, helps patient feel refreshed and
plan uninterrupted time. avoids fragmented sleep, strengthens
circadian rhythm.
Rest periods or naps during the day, if needed,
but do not interfere with nighttime sleep.
Use light sources to cue the body into a consistent
sleep rhythm.
Pharmacological management of insomnia should
be used only when behavioral and cognitive
approaches have been exhausted.
Decient nutritional status Recommend nutritious, high-protein, nutrient-dense Food will help energy levels; less energy
food to make every mouthful of food count. is needed for digestion with small,
Suggest more small, frequent meals. frequent meals.
Use protein supplements to augment diet.
Encourage adequate intake of uids,
recommend 810 glasses or whatever is
comfortably tolerated unless medically
contraindicated to maintain hydration.
Frequent oral hygiene.
Corticosteroids may be prescribed to
assist with appetite stimulation.
Symptom management Control contributing symptoms Managing other symptoms requires
(pain, depression, nausea, vomiting, diarrhea, energy and may interfere with
constipation, anemia, electrolyte imbalances, restful sleep.
dyspnea, dehydration).
Assess for anemia and evaluate for the
possibility of medications or transfusion.
Distraction/restoration Encourage activities to restore energy: spending Pleasant activities may reduce/relieve
time in the natural environment, listening to music, mental (attentional) fatigue.
praying, meditating, engaging in hobbies
(art, journaling, reading, writing, shing),
spending time with family and friends, joining in
passive activities (riding in car, being read to,
watching meal preparation).
(continued )
Table 76
Nursing Management of Cancer-Related Fatigue (continued )
Problem Intervention Rationale
Decreased energy Plan/schedule activities: Energy conservation helps to reduce

Choose someone to be in charge (elding burden and efciently use energy available.
questions, answering the phone,
organizing meals).
Determine where energy is best spent and eliminate or
postpone other activities.
Use optimal times of the day:
Save energy for most important events.
Learn to listen to the body; if fatigued, rest.
Let things go around the house.
Physical limitations Engage in an individually tailored exercise Exercise reduces the deleterious effects of
program approved by the health care team. immobility and deconditioning.
Enjoy leisure activities (sitting outside,
music, gardening, etc)
Be receptive to the patients pace, and move
slowly when providing care.
Mild physical therapy may be helpful in maintaining
joint exibility and preventing potential pain from
joint stiffness.
o] 4. Multiple Sclerosis Council for Clinical Practice Guidelines. Fatigue

Summary and multiple sclerosis: evidence-based management strategies for
fatigue in multiple sclerosis. Washington, DC 1998.
This chapter has provided an overview of fatigue as it spans 5. Busichio K, Tiersky LA, Deluca J, Natelson BH. Neuropsycho-
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Soc 2004;10:278285.
is a complex phenomenon that has been widely studied, there
6. North American Nursing Diagnosis Association. NANDA nurs-
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8o] Charles Kemp
Anorexia and Cachexia

When you cant eat, youre just no longer a part of your family. Theres no need for me to go to the
dinner table but sometimes I go so my family wont feel so sad. They try all the time to help me eat
but I just cant. I know it adds to their suffering. I think its worse than the pain.A woman with
lung cancer
Key Points Anorexia, the lack or loss of appetite, resulting in the inability
Anorexia and cachexia are a distressing part of advanced illness. to eat, and resulting weight loss are common in many ill-
They are distinct syndromes but clinically difcult to differentiate. nesses.1 In the early stages, anorexia usually resolves with reso-
Metabolic alterations are the primary cause of anorexia/ lution of the illness, and any weight lost may be replaced with
cachexia syndrome. nutritional supplements or increased intake.24 Unchecked,
Assessment and treatment of anorexia and cachexia include anorexia (or decreased nutritional intake from other causes
determining whether exogenous etiologies such as nausea and pain such as lack of available food) leads to protein calorie malnu-
are involved and vigorous treatment of any such etiologies if trition (PCM) and weight loss, primarily of fat tissue but also
present. of lean muscle mass. These conditions are common among
patients with advanced cancer and acquired immune de-
ciency syndrome (AIDS).3,5
Cachexia, a condition distinct from anorexia or simple
starvation from decreased food intake, also is common in can-
cer and AIDS, as well as other advanced conditions, including
congestive heart failure, severe sepsis, tuberculosis, rheuma-
toid arthritis, and malabsorption.69 The word cachexia is
derived from the Greek kakos, meaning bad, and hexis, mean-
ing condition. Cachexia is dened as a state of general ill
health and malnutrition, marked by weakness and emacia-
tion; it occurs in more than 80% of patients with cancer
before death and is the main cause of death in more than 20%
of such patients.4,10 In contradistinction to anorexia or star-
vation, in cachexia, there is approximately equal loss of fat
and muscle, signicant loss of bone mineral content, and
no response to nutritional supplements or increased intake.
Weight loss, regardless of etiology, has a decidedly negative
effect on survival, and loss of lean body mass has an especially
deleterious effect.4,10
In patients with cancer, weight loss is most common in
cancers of digestive organs (stomach, pancreas, colon) and is
also common in (but not limited to) solid tumors. However,
even in digestive organ cancers, the weight loss is not due
solely to decreased digestive function but also to other meta-
bolic processes, as described below.1013
Cachexia was previously considered to result from tumor
energy demands and/or an advanced state of anorexia, but
169
Metabolic Alterations as the Primary Cause

Table 81
of Anorexia/Cachexia Syndrome
Mechanisms and Effects of Anorexia/Cachexia Syndrome
Mechanisms Effect Metabolic alterations are common (and in many respects simi-
lar) in cancer and AIDS and are thought to be due in large part to
Loss of appetite Generalized host tissue wasting,
the systemic inammatory response and stimulation of cytokine
nausea or sick feeling, loss of
production (principally tumor necrosis factor alpha [TNF-]),
socialization and pleasure at meals
prostaglandins [PG], interleukin-1 [IL-1], interleukin-6 [IL-6],
Reduced voluntary Skeletal muscle wasting and
interferon [IFN-], and interferon [IFN-]). Other catabolic
motor activity (fatigue) inanition (fatigue)
tumor-derived factors thought to play a role in cachexia include
Reduced rate of Skeletal muscle wasting and proteolysis-inducing factor (PIF) and lipid mobilizing factor
muscle protein asthenia (weakness)
(LMF). Note, however, that cachexia is incompletely understood
synthesis
and a clear cause-and-effect link has been established only with
Decreased immune Increased susceptibility to TNF-, LMF, and PIF.7,10 At least initially, the metabolic alter-
response infections
ations cause the anorexia rather than the anorexia causing the
Decreased response Earlier demise and increased metabolic alterations. Major metabolic alterations include glu-
to therapy complications of illness cose intolerance, insulin resistance, increased lipolysis, increased
skeletal muscle catabolism, negative nitrogen balance, and, in
Sources: Bistrian (1999), reference 25; Grant & Rivera (1995), reference 26;
Seligman et al. (1998), reference 27. some patients, increased basal energy expenditure.7,10 Table 82
lists metabolic abnormalities in ACS.
Paraneoplastic Syndromes
there is now convincing evidence that in advanced diseases, Metabolic paraneoplastic syndromes, such as hypercalcemia or
such as cancer and AIDS, anorexia is a common characteristic hyponatremia (syndrome of inappropriate antidiuretic hor-
of cachexia and that cachexia develops from a low-level, mone) may also cause anorexia or symptoms such as fatigue
lengthy, systemic inammatory response (metabolic imbal- that contribute to anorexia. Paraneoplastic gastrointestinal
ance) related especially to the presence of proinammatory tract syndromes, such as esophageal achalasia or intestinal
cytokines. In other cases, however, anorexia results from, or is pseudoobstruction, result in decreased intake and, thus,
a symptom of, exogenous processes such as primary eating PCM.6,14
disorders, psychiatric illnesses, or unpleasant aspects of illness
like pain or nausea.10,11
The basic etiologies of primary anorexia/cachexia syndrome Physical Symptoms
(ACS, or in the case of cancer-related anorexia/cachexia, CACS)
A number of physical symptoms of advanced disease may con-
are (1) metabolic abnormalities, (2) the actions of proinamma-
tribute to or cause anorexia, including pain, dysguesia (abnor-
tory cytokines, (3) systemic inammation, (4) decreased food
malities in taste, especially aversion to meat), ageusia (loss of
intake, (5) tumor by-products, and (6) the catabolic state. These
taste), hyperosmia (increased sensitivity to odor), hyposmia
result in derangement of function with negative effects on sur-
(decreased sensitivity to odor), anosmia (absence of sense of
vival and quality of life. There is within some of these mecha-
smell), stomatitis, dysphagia, odynophagia, dyspnea, hepato-
nisms a mutually reinforcing aspect; for example, anorexia leads
megaly, splenomegaly, gastric compression, delayed emptying,
to fatigue, fatigue increases anorexia, anorexia increases fatigue,
malabsorption, intestinal obstruction, nausea, vomiting, diar-
and so on. Table 81 summarizes the mechanisms and effects
rhea, constipation, inanition, asthenia, various infections (see
of ACS.
below), and early satiety. Alcoholism or other substance depend-
ence may also contribute to or cause anorexia. Primary or
metastatic disease sites have an effect on appetite, with cancers,
o] such as gastric and pancreatic, having direct effects on organs of
Etiologies and Process alimentation.15
Each of these should be ruled out as a primary or con-
Common causes of anorexia and/or ACS are described below. tributing cause of anorexia and, if present, treated as dis-
Anorexia or ACS may be considered primary if resulting from cussed elsewhere in this book. In general, people who are
endogenous metabolic abnormalities such as cytokine pro- seriously ill and/or suffering distressing symptoms have poor
duction stimulation and secondary if resulting from symp- appetites. Many cancer or human immunodeciency virus
toms or exogenous etiologies such as pain, depression, nausea, (HIV) treatments have deleterious effects on appetite or result
or obstruction. in side effects leading to anorexia and/or weight loss (see
Anorexia and Cachexia 171
Table 82
Metabolic Abnormalities in Cachexia
Metabolic Dimension Parameter Usual Effect
Carbohydrate Body glycogen mass Decreased

Glucose tolerance Decreased
Glucose production Increased
Glucose turnover Increased
Serum glucose level Unchanged
Insulin resistance Increased
Serum insulin level Unchanged
Protein Body (lean) muscle mass Decreased
Body protein synthesis Increased
Nitrogen balance Negative
Urinary nitrogen excretion Unchanged
Lipid Body lipid mass Decreased
Lipoprotein lipase activity Decreased
Fat synthesis Decreased
Fatty acid oxidation Increased
Serum lipid levels Increased
Serum triglyceride levels Increased
Energy Voluntary motor activity Decreased
Energy expenditure Increased or decreased
Energy stores Decreased
Energy balance Negative
Sources: Ma and Alexander (1997), reference 13; Rivandiera et al. (1998), reference 20; Bistrian (1999), reference 25;
Tisdale (1997), reference 28.
Medication Side Effects, below). Patients with HIV disease Psychological and/or Spiritual Distress
may also develop primary muscle disease, leading to weight
loss. Psychological and/or spiritual distress is an often overlooked
cause of anorexia. The physical effects of the illness and/
Medication Side Effects or treatment coupled with psychological responses (espe-
cially anxiety and/or depression) and/or spiritual distress,
Side effects of medications (especially those used to treat HIV such as feelings of hopelessness, may result in little enthusi-
infection, such as acyclovir, ethambutol, foscarnet, ganciclovir, asm or energy for preparing or eating food. As weight is lost,
isoniazid, interferon, pyrimethamine, zidovudine, and others) changes in body image occur, and as energy decreases,
may directly result in anorexia or have side effects such as nau- changes in self image occur. Moreover, appetite and the
sea, taste changes, and diarrhea that lead to anorexia and ability to eat are key determinants of physical and psycholog-
PCM. While aggressive curative treatment is seldom appro- ical quality of life.15 In some cultures, for example, Southeast
priate for patients with terminal illness, it is not always possi- and East Asian, some degree of obesity is perceived as a sign
ble to discern who is terminal, who is not terminal, and, if of good health and weight loss is seen as a clear sign of
terminal, how much time remains. Moreover, palliative care is declining health.17 For many patients, the net result of ACS
not restricted to patients who are expected to die. Cytotoxic and the resulting weight loss constitute a negative-feedback
drugs that tend to be most emetic are cisplatin, dacarbazine, loop of ever-increasing magnitude and increased suffering in
cyclophosphamide, carboplatin, and streptozocin. Moderate multiple dimensions. Clinicians evaluating patients with
emetic effects occur after the administration of adriamycin, anorexia are encouraged to review basic principles for the
methotrexate, and cytarabine.16 assessment and management of depression as covered in
detail in Chapter 19. Treatment of underlying depression can futile task. Moreover, there are no clear and widely accepted
improve appetite considerably. diagnostic criteria for ACS. Nevertheless, anorexia from some
etiologies is treatable; hence, assessment of the possible pres-
Other Physical Changes ence of etiologies noted above is integral to quality palliative
care. Other assessment parameters are used according to the
The t of dentures may change with illness, or already poorly patients ability to tolerate and benet from the assessment. At
tting dentures may not be as well tolerated in advanced dis- some point in the illness, even basic assessments, such as
ease. Dental pain may be overlooked in the context of terminal weight, serve only to decrease the patients quality of life.
illness. Oral (and sometimes esophageal) infections and com- Assessment parameters of nutritional status include decreased
plications increase with disease progression and immunocom- intake, decreased weight, muscle wasting, decreased fat, loss of
promise. Aphthous ulcers, mucositis, candidiasis, aspergillosis, strength, and changes in laboratory values. The patient is likely
herpes simplex, and bacterial infections cause oral or esophageal to report anorexia and/or early satiety and to experience a
pain and, thus, anorexia.15,18 decline in mental acuity.
The following laboratory values are of signicance in
ACS15:
o] Serum albumin is inuenced by a number of stres-
Assessment sors, such as infection, hydration, and kidney or
liver disease, and hence is not an accurate measure
Assessment parameters in anorexia and ACS are summarized of nutritional status. Decreased serum albumin is
in Table 83. prognostic of increased morbidity and/or mortality.
Anorexia and weight loss may begin insidiously with Serum thyroxin-binding prealbumin (transtyretin)
slightly decreased appetite and slight weight loss characteristic levels are indicative of visceral protein stores and
of virtually any illness. As the disease progresses and comorbid nutritional status. Decreased levels indicate
conditions increase in number and severity, anorexia and under-nutrition.
PCM increase and a mutually reinforcing process may emerge. Changes in other laboratory values, such as elec-
For example, along with the metabolic abnormalities of ACS, trolyte and mineral levels, may also show changes in
fatigue leads to more pronounced anorexia and PCM, which, nutritional status.
in turn, leads to increased fatigue and weakness that may
accelerate the metabolic processes of ACS. Assessment also includes determining usual intake pat-
With ACS common, and in many cases inevitable among terns, food likes and dislikes, and the meaning of food or eat-
patients with terminal illness, identifying specic causes is an ing to the patient and family. Too often, a family member
extremely challenging and, in far advanced disease, an ultimately attaches huge signicance to nutritional intake and exerts
Table 83
Assessment Parameters in Anorexia and Cachexia
The patient is likely to report anorexia and/or early satiety.

Weakness (asthenia) and fatigue are present.
Mental status declines, with decreased attention span and ability to concentrate. Depression
may increase concurrently.
Inspection/observation may show progressive muscle wasting, loss of strength, and decreased
fat. There often is increased total body water, and edema may thus mask some wasting.
Weight may decrease. Weight may reect nutritional status or uid accumulation or loss.
Increased weight in the presence of heart disease suggests heart failure.
Triceps skinfold thickness decreases with protein calorie malnutrition (PCM, skinfold thickness
and mid-arm circumference vary with hydration status).
Mid-arm muscle circumference decreases with PCM.
Serum albumin concentrations decrease as nutritional status declines. Albumin has a half-life of
20 days; hence, it is less affected by current intake than other measures.
Other lab values associated with anorexia/cachexia syndrome include anemia, increased
triglycerides, decreased nitrogen balance, and glucose intolerance.13,32
Sources: Ottery et al. (1998), reference 3; Rivadeniera et al. (1998), reference 20; Casciato (1995), reference 29.
pressure on the patient to increase intake . . . If he would just and frequent support in the face of helplessness and frustra-
get enough to eat. Giving sustenance is a fundamental means tion related to ever-diminishing intake.
of caring and nurturing, and it is no surprise that the presence Culturally appropriate or favored foods should be en-
of devastating illness often evokes an almost primitive urge to couraged. In some cases, certain traditional foods may be
give food. thought especially nutritious and some foods with good
nutritional content, harmful. Some commercial supplements
(called milk), for example, are thought by many Southeast
o] Asians to have highly desirable, almost magical healing prop-
Interventions erties.
Small meals, on the patients schedule and according to the
There are few credible reports of nutritional interventions that taste and whims of the patient, are helpful, at least emotion-
reverse ACS in advanced disease. Nevertheless, the process ally, and should be instituted early in the illness so that eating
may be slowed to some extent in early and even late disease does not become burdensome.
stages, especially with the use of multimodal approaches (nutri- Foods with different tastes, textures, temperatures, season-
tional, combined drug therapy, exercise, psychological/social, ings, degrees of spiciness, degrees of moisture, and colors, for
and spiritual). There are, of course, interventions that are efca- example, should be tried, but the family should be cautioned
cious in treating anorexia from exogenous etiologies such as against overwhelming the patient with a constant parade of
nausea or esophageal stricture. Interventions are divided into foods to try. Room temperature and less spicy foods are pre-
exogenous symptom management, nutritional support, enteral ferred by many patients.
and parenteral nutrition, pharmacological management, and Different liquids should also be tried. Cold, clear liquids
multimodal approaches. are usually well tolerated and enjoyed, though cultural con-
straints may exist. For example, patients with illnesses that
(Exogenous) Symptom Management are classied as cold by some Southeast Asians and Latinos
are thought to be harmed by taking drinks or foods that are
The presence or absence of symptoms that may cause or con- either cold in temperature or thought to have cold pro-
tribute to anorexia and weight loss should be evaluated. If perties.
anorexia is due to an identiable problem or problems, such as Measures as basic as timing intake may also be instituted.
pain, nausea, fatigue, depression, or taste disorder, for exam- Patients who experience early satiety, for example, should take
ple, then intervene as discussed elsewhere in this book. the most nutritious part of the meal rst (usually without u-
ids other than nutritional supplements).
Nutritional Support Oral care may be considered an integral part of nutritional
support. Hygiene and management of any oral pain are essen-
Nutritional support, especially oral, to increase intake overall tial in nutritional support. Procedures, treatments, psycholog-
or to maximize nutritional content may be helpful to some ical upsets (negative or positive), or other stresses or activities
extent, especially early in the disease process.4,15 As noted ear- should be limited prior to meals.
lier, some degree of obesity is thought by some cultures to be a
sign of good health and any weight loss to be a sign of ill
Enteral and Parenteral Nutrition
health. Helping family members understand nutritional needs
and limitations in terminal situations is essential. General Enteral feeding (via nasoenteral tube, gastrostomy, jejunos-
guidelines for altering diet include the following:4,15,1719 tomy) is indicated in a few terminally ill patients, including
The nutritional quality of intake should be evaluated and, if those with weight loss due to, or exacerbated by, stulas,
possible and appropriate, modied to improve the quality. mechanical bowel obstruction, dysphagia, odynophagia,
Patients who are not moribund may benet from supplemen- vomiting, or malabsorption due to tumor or treatment. For
tary sources of protein and calories, though taste fatigue may short-term feeding (< 4 weeks), nasoenteral feeding is com-
result from too frequent intake of these. See Multimodal monly used, while for long-term enteral feeding (> 4 weeks),
Approach later in this chapter. gastrostomy or jejunostomy is the preferred means.20 A wide
Determine the meaning to the patient and family of giv- variety of feeding formulas exist, with many providing com-
ing, taking, and refusing food. In families in which dying is plete nutrition. The primary sources of nutrients are usually
experienced to some extent as a time of personal growth or as follows:
closeness, redirection of food-related personal values from
symbolic nurturing to actual sharing is possible. Thus, even Calories from carbohydrates
half a bite of food shared in sacred meals eaten with loved Protein from casein or whey
ones is a kind of victory over the disease or hopelessness. Usu- Fat from triglycerides or vegetable oils
ally, however, strong and even unconscious beliefs about food Various nutrients (sh oil, glutamine, arginine, and
are difcult to modify, and many families require education RNA are sometimes added)
Specic formulas are based on various body functions (usually 2-adrenergic agonists (clenbuterol, salbutamol,
decreased), for instance, heart, liver, kidneys, as well as other salmeterol) given in low doses improve muscle
factors. mass status.
Total parenteral nutrition (TPN) clearly has a place early in Thalidomide inhibits TNF- production and
the process of cancer, for example, during some treatment neoangiogenesis.
regimes such as bone marrow transplantation and under cir- Anabolic agents such as growth hormone (GH),
cumstances noted above (dysphagia, etc.). It has greater poten- insulin-like growth factor (IGF-1), testosterone,
tial for complications than does enteral nutrition, seldom dihydrotestosterone, and testosterone analogs may
improves outcome, and thus is very seldom indicated in termi- maintain or improve lean body mass through
nally ill patients with advanced disease.4 enhanced protein synthesis.
Anabolic androgens (synthetic derivatives of testos-
Pharmacological Interventions terone) also improve body weight, muscle mass, and
performance status in wasting diseases.
Pharmacological options to address ACS in the palliative setting Branched-chain amino acids (BCAAs) such as
are useful in early stages of illness, but futile in the nal stages of leucine, isoleucine, and valine improve protein and
terminal illness. Pharmacological options with indications and albumin synthesis.
notable side effects are presented in Table 84.
Medications under investigation for the treatment of ACS10 Medications that have not shown efcacy in the treatment of
include: ACS include cyproheptadine, pentoxifylline, and hydrazine
sulfate.21
Nonsteroidal antiinammatory drugs (NSAIDs),
especially cyclooxygenase-2 (COX-2) inhibitors such
as celecoxib, but also COX-1 inhibitors such as Multimodal Approach
ibuprofen affect the systemic inammatory
The devastating consequences, complexities, and resistance to
response inherent in ACS. COX-2 inhibitors
the treatment of ACS lead inevitably to consideration of a
also block angiogenesis and suppress tumor growth.
multimodal approach.5,10,15,22 Such an approach could include
Melatonin may decrease circulating levels of TNF-.
some or all of the following:
N-3 polyunsaturated fatty acids (PUFA) such as
found in sh oil decrease TNF-, IL-1, IL-6, and Prevention or early recognition and treatment of
IFN-. exogenous symptoms that may contribute to anorexia
Table 84
Pharmacological Options in Anorexia/Cachexia Syndrome
Medication and Common Dosing Effects and/or Indications Side Effects and Other Considerations
Progestational agents, especially megestrol Improves appetite, weight gain, sense of Thromboembolic events, glucorticoid effects,
acetate 160800 mg/24 h; up to well-being heart failure, GI upset, menstrual irregularities,
1600 mg/24 h dyspnea, tumor are, hyperglycemia,
hypertension, mood changes
Corticosteroids, e.g., dexamethasone Improves appetite, sense of well-being Immunosuppresion, masks infection,
0.759 mg/24 h hypertension, myopathy, GI disturbances,
dermal atrophy, increased intracranial
pressure, electrolyte imbalances, decreased
muscle strength, increased protein
requirements; short-term; avoid
abrupt cessation
Cannabinoids (dronabinol) 520 mg/24 h; Increased appetite, decreased anxiety Somnolence, confusion (especially if taken
marijuana orally and in elderly), smoked form illegal
Metoclopramide 10 mg 30 min ac and Improved gastric motility, decreased early Diarrhea, restlessness, drowsiness, fatigue,
at bedtime satiety, improved appetite extrapyramidal effects, antagonized by opioids
Thalidomide 200300 mg/24 h Weight gain Sedative, category X in pregnancy
Melatonin 20 mg hs Decreased weight loss, decreased No known toxicities
depression, improved performance
Sources: Van Halteren et al. (2003), reference 4; Inui (2002), reference 11; Cunningham (2004), reference 15; Monthly Prescribing Reference (2004), reference 24.
Recognition and early intervention in the nutri- discharge, she, unfortunately, began losing weight, and it was
tional needs of patients with potentially life- clear that she was again drinking. She died in an emaciated
threatening illnesses or illnesses associated state at home several months later.
with ACS o]
Pharmacological therapy that combines oral prog-
estagen (medroxyprogesterone 500 mg/24 hours)
with the following (note that this approach is under o]
investigation): Summary
A diet high in polyphenol content (green tea, red
wine, apples, oranges, onions) or supplements to Increasingly, ACS is recognized as a serious aspect of advanced
increase antioxidant activity or terminal illness and as an area requiring further research,
Oral pharmaconutritional support high in N-3 especially with respect to (1) the pathophysiology of cachexia
PUFA and (2) increasing treatment options. Current understanding
Antioxidant treatment with alpha lipoic acid, of ACS includes the following:
carbocysteine lysine salt, vitamin E, vitamin A,
and vitamin C Anorexia and cachexia are distinct syndromes but
Celecoxib 200 mg daily clinically are difcult to differentiate.
With or without antiTNF- monoclonal anti- Anorexia is characterized by decreased appetite that
body (mAb) may result from a variety of causes (including
Resistance training to increase lean muscle mass is unmanaged symptoms such as nausea and pain), it
effective at least early in the disease process. results primarily in loss of fat tissue, and resultant
weight loss is reversible.
Clearly, the involvement of several disciplines (medicine, nurs- Cachexia is a complex metabolic syndrome thought
ing, nutrition, physical therapy, and perhaps others) is required to result from the production of proinammatory
in this approach. The following case study illustrates some of cytokines such as TNF and IL-1. In cachexia, there is
the issues commonly associated with ACS. approximately equal loss of fat and muscle and sig-
nicant loss of bone mineral content. Weight loss
from cachexia does not respond to nutritional inter-
9= ventions.
case study Assessment and treatment of ACS include determi-
A 58-Year-Old Woman with ACS and Alcohol Addiction nation of whether exogenous etiologies such as
A 58-year-old woman with a diagnosis of advanced cervical nausea or pain are involved, the vigorous treatment
carcinoma was cared for at home by family and the services of of any such etiologies, and nutritional support if
a home care agency. Despite careful symptom management indicated.
and nutritional support, she continued to lose weight and Treatment of cachexia is unsatisfactory, but some
suffer from increasing weakness and fatigue. She had refused temporary gains may occur with progestational
several opportunities for inpatient treatment, but when she agents, especially megestrol acetate and a multi-
developed fever, diarrhea, and dehydration, she agreed to go modal approach such as discussed above. Other
to the hospital. pharmacological measures are also helpful.
Within several hours of admission, she became agitated Progress is being made in understanding and treating the prob-
and disoriented. Her condition deteriorated rapidly; she lem, but ACS is neither yet completely understood nor is treat-
developed chest pain and became extremely fearful and ment optimized.
paranoid, and she began hallucinating. She was started on
intravenous haloperidol with little effect. A consulting psy-
chiatrist, called from the emergency department, determined
that she was experiencing acute alcohol withdrawal. references
Although the patient and family had previously denied
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2. Finley JP. Management of cancer cachexia. AACN Clin Issues
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2000;11:590603.
She was switched to intravenous diazepam and within
3. Ottery FD, Walsh D, Strawford A. Pharmacologic management
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9o] Cynthia King
Nausea and Vomiting

Queasiness and heaving have been my worst symptoms these last few weeks. These feelings are
relentless. I am scared to eat or drink anything, but I long to taste some of my favorite foods and
drink lemonade before I die. I just pray every day that I can get comfortable before I die.
C. B., a patient 3 weeks before dying
Key Points Nausea and vomiting are symptoms commonly experienced

Nausea and vomiting are common and signicant symptoms by patients with advanced disease. Currently, the majority of
experienced by patients with advanced diseases. available research about nausea and vomiting deals with can-
There still remains a lack of knowledge specically related to cer patients. Thus, this chapter will use advanced cancer patients
assessing and managing nausea and vomiting in terminally ill as a model for assessment and treatment of nausea and vomit-
patients, yet there are many pharmacological and ing, but these principles can also be applied to other patients
nonpharmacological therapies that can be used. with advanced disease. For cancer patients, these symptoms
All nurses in all settings can play an important role in advancing may be experienced secondary to the underlying malignancy
the knowledge and skills related to nausea and vomiting in as well as to the frequent side effects of the medications used
palliative care. to treat the cancer. To date, most research has focused on
treatment-induced nausea and vomiting in patients receiving
chemotherapy for cure or control of disease. Unfortunately,
there is a paucity of literature about nausea and vomiting in
cancer patients who are not receiving chemotherapy or who
are in the terminal phase of their illness.1
Nausea and vomiting are frequent and distressing symptoms
experienced by patients with advanced cancer who are receiving
palliative care. Research has shown that 40% to 60% of patients
with advanced cancer experience nausea and/or vomiting. Addi-
tionally, research has shown that these symptoms are more com-
mon in patients under 65 years old, in women, and in patients
with cancer of the stomach or breast. For stomach cancer, the
high frequency may be due to local causes such as obstruction.
For breast cancer, the causes may be multifactorial and include
hypercalcemia, brain metastases, medications, and gender.24
Ross and Alexander4 describe the 11 Ms of nausea and vomit-
ing in terminally ill patients. These include: (1) metastases (ce-
rebral or liver), (2) meningeal irritation, (3) movement (causing
vestibular stimulation), (4) mentation (e.g., cerebral cortex),
(5) medications (e.g., opioids, chemotherapy), (6) mucosal irri-
tation (e.g., hyperacidity, gastroesophageal reux), (7) mechani-
cal obstruction (e.g., constipation, obstipation, tumor), (8)
motility (e.g., ileus), (9) metabolic imbalance (e.g., hypercal-
cemia, hyponatremia), (10) microbes (e.g., esophagitis), and
(11) myocardial dysfunction (e.g., ischemia, congestive heart
failure). Sadly, this symptom complex of nausea and vomiting
in advanced cancer has not been reduced in the past decade.
177
The level of distress and sense of treatment burden associ- well-being.10 The distress caused by nausea and vomiting can
ated with nausea and vomiting may be profound.5 If these affect one or all of the four dimensions of QOL (Figure 91).11
symptoms are left untreated, they can interfere with usual daily Adequate management of nausea and vomiting can positively
activities, increase anxiety and other symptoms, and impair affect all dimensions of a patients QOL. The control of nausea
quality of life (QOL).69 It is essential that these symptoms be and vomiting can provide patients with a sense of control over
adequately treated throughout the trajectory of cancer care and their body and life; decrease anxiety and fear; decrease caregiver
across all settings. As more palliative care is provided in outpa- burden; decrease fatigue, anorexia, and insomnia; increase
tient settings, homes, and hospices, it is important to involve physical, social, and cognitive functioning; and allow patients
the patient and family in the management of nausea and vom- to carry out some of their usual daily activities.9,11
iting. Nurses who provide palliative care to cancer patients of
any age and in any setting need to adequately assess for nausea
and vomiting, provide appropriate drug and nondrug inter- o]
ventions, provide essential teaching of self-care to patients Conceptual Concerns Related
and families, and evaluate all interventions and self-care. The to Nausea and Vomiting
approach must be practical, with the goal being relief of symp-
toms as soon as possible. The treatment may be directed at the To thoroughly examine the problem of nausea and vomiting
cause, at the symptom, or at both. This disruption in QOL can in palliative care, it is important to be clear about certain con-
be of particular signicance to patients facing the end of life. cepts. Symptoms such as nausea and vomiting are composed
of subjective components and dimensions unique to each
patient. Symptoms are different from signs, which are objec-
o]
tive and can be observed by the health care professional.12,13
Nausea and Vomiting and Quality Of Life
Symptom occurrence is comprised of the frequency, duration,
and severity with which the symptom presents.13 Symptom
The distress and disruption in daily activities caused by nausea
distress involves the degree or amount of physical and mental
and vomiting can impair QOL for patients with advanced dis-
or emotional upset and suffering experienced by an individ-
ease. Although there is controversy over the number and exact
ual. This is different from symptom occurrence.12,13 Lastly,
dimensions of QOL, the City of Hope National Medical Center
symptom experience involves the individuals perception and
QOL model includes the four dimensions of physical well-
response to the occurrence and distress of the symptom.12,13
being, psychological well-being, social well-being, and spiritual
The terms nausea and vomiting represent clearly dis-
tinct concepts. Unfortunately, terms used to describe them are
Figure 91. The effect of nausea and vomiting on the domains frequently used interchangeably. This may result in confusion
of quality of life (QOL). Source: Grant (1997), reference 11, during assessment, measurement, treatment, or patient and
with permission. family education. Nausea is a subjective symptom involving an
unpleasant sensation experienced in the back of the throat and
the epigastrium, which may or may not result in vomiting.1215
Other terms used by patients include sick at my stomach,
butteries, and sh at sea. The symptoms of increased sali-
vation, dizziness, light-headedness, difculty swallowing, and
tachycardia may accompany the feeling of nausea. Patterns of
nausea include acute, delayed, and anticipatory. Acute nausea
occurs within minutes or hours after such events as having
chemotherapy. Delayed nausea generally occurs at least 24 hours
after events like chemotherapy and may last for several days.
Anticipatory nausea occurs before the actual stimulus and
develops only after an individual has had a previous bad expe-
rience with an event such as chemotherapy that resulted in
nausea or vomiting.12,13,1517
Vomiting is often confused with nausea but is, in fact, a sep-
arate phenomenon and may or may not occur in conjunction
with nausea. It is a self-protective mechanism by which the
body attempts to expel toxic substances and involves the expul-
sion of gastric contents through the mouth, caused by forceful
contraction of the abdominal muscles. Vomiting is frequently
described as throwing up,pitching,barng, or upchuck-
ing. Retching involves the spasmodic contractions of the
diaphragm and abdominal muscles.1216
Nausea and Vomiting 179
o] dopamine, histamine, or prostaglandins, nausea and vomiting

Physiological Mechanisms of Nausea and Vomiting may result. The vagal afferents also enter the CTZ.1620
In the past, it was hypothesized that chemotherapy-induced
After thoroughly understanding the concepts of nausea and nausea and vomiting occurred as a result of stimulation of the
vomiting, it is important to understand the physiological mech- CTZ by the chemotherapy or other drugs. Although it is now
anisms and causes of this symptom complex. Vomiting is con- known that exposure of the CTZ to the neurotransmitters is
trolled by stimulation of the vomiting center (VC) or emetic the most important factor, there is more emphasis being
center, which is an area of the brainstem. There are multiple placed on understanding other mechanisms, such as the 5-
central and peripheral pathways that can stimulate the VC. It is hydroxytryptamine3 (5-HT3) receptor sites in the small intes-
important for nurses to understand these pathways to deter- tine. In newer theories, it appears that for patients receiving
mine a cause and to select appropriate treatments. The various chemotherapy, radiation to the duodenum, or other drugs, the
pathways include the peripheral pathways of the vagal afferents, enterochromafn cells of the mucosa of the duodenum lead to
the pharyngeal afferents, and the vestibular system. The central the release of 5-HT3. When 5-HT3, or serotonin, is released
pathways include the midbrain afferents and the chemoreceptor from these cells, it binds to specic 5-HT3 receptors and these
trigger zone (CTZ) (Figure 92).14,16,1820 afferent impulses travel to the VC.16,21
The vagal afferent pathway involves bers located in the More recently, a new ligand-receptor pair has been des-
wall of the stomach and proximal small intestine, which sense cribed as having an important role in nausea and vomiting.
mechanical or chemical changes in the upper gastrointestinal The three neurokinin receptors are called neurokinin-1 (NK-
tract. The pharyngeal afferent pathway involves mechanical 1), neurokinin-2, and neurokinin-3 receptors. Their preferred
irritation of the glossopharyngeal nerve. Excessive coughing ligands are known as neurokinins or tachykinins. These are
may irritate this. The vestibular system involves stimulation 11-amino acid peptides including substance p, neurokinin A,
starting in the inner ear. This involves nausea and vomiting and neurokinin B. The NK-1 receptor is stimulated by sub-
resulting from such causes as motion sickness. If a patient has stance p and is thought to be involved with emesis.13,22
a prior history of motion sickness, he or she may have an
increased incidence of nausea and vomiting with treatments
such as chemotherapy.16,18,19 o]
The central pathways include the midbrain and the CTZ. Causes of Nausea and Vomiting
Intracranial pressure, stress, anxiety, sights, sounds, or tastes may
stimulate the midbrain afferent pathway. The CTZ is located at There are numerous potential causes of nausea and vomiting
the area postrema of the fourth ventricle of the brain. Once the in terminal cancer patients requiring palliative care. These are
CTZ is exposed to various neurotransmitters, such as serotonin, presented in Table 91 and are useful to remember when deal-
ing with advanced disease. Reversible causes (e.g., constipa-
tion) may be found, and it is crucial to abolish nausea and
vomiting as quickly as possible. Often, the cause for nausea
and vomiting is multifactorial.3,4,16,20,23,24 For instance, there
Figure 92. Physiological mechanisms of nausea and vomiting.
may be a physiological imbalance, such as a uid and elec-
trolyte imbalance, occurring at the same time as nausea is pro-
voked by addition of opioids or nonsteroidal antiinammatory
drugs (NSAIDs) to control pain. In the 2-year experience of
the World Health Organization with the analgesic ladder in
cancer pain, nausea and vomiting were present in 22% of the
days during the three-step treatment.25 It has recently been
hypothesized that patients expectations may affect their expec-
tations of symptom distress and experience of nausea and vom-
iting. One study examined chemotherapy-related nausea and
vomiting in treatment-nave patients and found a statistically
signicant relationship (p = 0.015) between the patients expec-
tations of the symptom occurrence and their expectations of
symptom distress.13,26 Roscoe and colleagues27 described two
studies that found signicant relationships between patients
expectations for nausea development measured before their
rst chemotherapy treatment and their mean postchemother-
apy nausea severity. Additionally, when considering nausea and
vomiting from a QOL perspective (see Figure 91),11 psycho-
logical, social, and spiritual distress can cause or exacerbate
nausea and vomiting.
of nausea and vomiting, effectiveness of previous treatments

Table 91 for this symptom complex, and any current treatment that
Causes of Nausea and Vomiting
might be contributing to these symptoms. Information
Irritation/Obstruction Biochemical obtained by questionnaires or self-report tools such as diaries,
of Gastrointestinal Abnormalities journals, or logs is crucial for the identication and mana-
Cancer Hypercalcemia gement of this symptom complex and for improving the
Chronic cough Hyponatremia patients QOL.12,18,20
Assessment and evaluation of nausea and vomiting also
Esophagitis Fluid and electrolyte
must include the pattern, what triggers the symptom complex,
Peptic ulcer imbalances
assessment of the mouth, assessment of the abdomen and
Gastric distention Volume depletion
bowel sounds, assessment of the rectum, possible laboratory
Gastric compression Adrenocorticol studies (e.g., renal and liver function, ionized calcium, elec-
insufciency trolytes, white blood cell count and differential, serum drug
Delayed gastric
emptying Liver failure levels), and possible radiographic studies (e.g., computed
Bowel obstruction Renal failure tomography, magnetic resonance imaging scan, abdomen at
plate). Specically, nurses should try to determine if there is a
Constipation
Drugs pattern to the nausea after certain drugs, after meals, on move-
Hepatitis
Chemotherapy ment, in certain situations, or with certain smells. It is also
Biliary obstruction important to ask if there is epigastric pain (possibly indicating
Opioids
Chemotherapy gastritis), pain on swallowing (oral thrush), pain on standing
Digoxin
Radiation (mesenteric traction), thirst (hypercalcemia), hiccups (ure-
Antibiotics
mia), heartburn (small stomach syndrome), or constipation.28
Sepsis Anticonvulsants There are several measurement tools that may be used to
Metastases Aspirin and NSAIDs assess one or more of the components of nausea and vomiting.
CNS Some tools measure multiple components, while others measure
Increased Intracranial a single component or a global measure of the nausea/vomiting.
Brain
Pressure
Meninges Instruments may involve checklists, visual analogue scales,
Cerebral edema patient interviews, or Likert scales. Almost all involve self-report
Liver
Intracranial tumor by the patient.14,15,2933 The most commonly used tools with relia-
Psychological Intracranial bleeding bility and validity are shown in Table 92.13,15,29,34,35
Fear Skull metastases Whatever tool nurses use should be evaluated and chosen
carefully. The words on the tools should have the same mean-
Anxiety
ing to all participants. It is also important not to burden the
CNS = central nervous system; NSAIDs = nonsteroidal antiinammatory patient or family with lengthy or intrusive questions.13 Rhodes12
drugs. recommends the following points when using an instrument
to measure nausea and vomiting: (1) use self-report tools instead
of observational assessments; (2) determine and describe the
symptoms and components; (3) consider the clarity, cultural
o] sensitivity, and understandability of the tool; (4) check reliabil-
Assessment of Nausea and Vomiting ity and validity; (5) use an instrument with an easy-to-read for-
mat; (6) consider the purpose of the tool, the target population,
Assessment is an important process and the foundation of all and whether it is for acute, delayed, or anticipatory nausea and
treatment-related decisions. It should be an ongoing process vomiting or for patients with advanced cancer; and (7) con-
that begins with the initial patient contact regarding nausea sider the type of score obtained (total versus subscale scores)
and vomiting. Without a complete and ongoing assessment, and the ease of scoring.
nausea and vomiting may be mismanaged. This can result in Self-report tools such as journals, logs, or diaries can be
unnecessary anxiety, suffering, and a decrease in QOL for the especially helpful for assessing nausea and vomiting. The
patient and family. Nurses working in all settings and with all patient, family, or caregiver can complete this tool. By using
age ranges of patients need to use skillful observation along these tools, patients and families can develop experience in
with effective data collection techniques during assessment. It problem-solving and a sense of control. For health care
is rare that patients present with nausea and vomiting as a rst providers, journals, logs, and diaries can offer useful informa-
sign of advanced cancer. Generally, patients who complain of tion on patterns of symptom occurrence, self-care strategies,
this symptom complex have a well-documented history of their and situational events.13 Goodman36 provided examples of a
disease, including diagnosis, prior treatment, and sites of metas- chemotherapy treatment diary that could be adapted for use
tases. If this information is not available, nurses should obtain with terminally ill patients to record nausea and vomiting
a complete medical/surgical history, including previous episodes (Figure 93).
Table 92
Tools to Measure Nausea and Vomiting
Instrument Type Reliability/Validity
Visual Analog Scale (VAS) 100-mm line, with Reliability is a strength.

anchor descriptors at
each end
Morrow Assessment of 16 item, Likert scale Test/retest reliability 0.610.78
Nausea and Emesis (onset, severityintensity)
(MANE)
Rhodes Index of Nausea and 8 item, Likert scale Split-half reliability 0.830.99
Vomiting Form 2 (INV-2) Cronbachs alpha 0.98
Construct validity 0.87
Functional Living Index 18 item, Likert scale Content and criterion validity
Emesis (FLIE) Internal consistency
Figure 93. Nausea diary. Source: Goodman

(1997), reference 36. Copyright 1997 by Oncol-
ogy Nursing Society. Reproduced by
permission.
transdermal fentanyl patches that are changed every 48 hours.

9=
She also uses oral transmucosal fentanyl citrate four times per
case study 1
day as needed for pain. She recently had to increase her dose
Teresa, a Patient with Acute Onset of Nausea
from 400 mcg to 800 mcg four times per day. Teresa does not
Teresa, a 34-year-old mother of two young children, is a hospice want to eat or drink uids because of the nausea and dry
patient with metastatic ovarian cancer. She tells you she has had heaves. You perform a thorough assessment of this new symp-
mild intermittent stomach upset with her pain medication tom by (1) asking the patient/family about the severity/intensity
but now states she has severe nausea. She feels like she will vomit of the nausea, duration of nausea, frequency of nausea, pattern
but only has dry heaves. She currently has three 100 mcg/h of nausea, triggers (e.g., with movement, after eating or
drinking), and presence of vomiting; (2) asking the 4. Choose the route.
patient/family about epigastric pain, pain on swallowing, pain 5. Change the protocol if it is not working.
on standing, thirst, hiccups, heartburn, constipation, and any 6. Consider steroids.
changes in medications; and (3) performing a thorough assess- 7. Consider ranitidine.
ment of the abdomen and bowel sounds, and of the rectum. 8. Decrease or change the opioid for pain.
Through your assessment you discover that bowel sounds 9. Remember that anxiety can cause nausea.
are decreased in all quadrants, and the abdomen is rm and
Woodruff 19 adds that pharmacological management should
distended. The patient states that she stopped taking the stool
include adequate doses of antiemetics, combinations of
softener and laxative because she thought it was causing her
antiemetics, and use of intravenous (IV) and rectal routes if
nausea and she does not remember the last time she had a stool.
necessary. If nausea and vomiting continue, consider psycho-
You decide to prepare and give Teresa an enema of
logical factors, reassess for missed physical causes, and try dif-
molasses, skim milk, and warm water and follow this by
ferent combinations of antiemetics.
8 ounces of warm water. The patient has a large bowel move-
Successful pharmacological management of nausea and
ment and agrees to restart a bowel regimen with Senokot-S.
vomiting in advanced cancer is related to the frequency, dose,
You choose this product because it has a stool softener and
and type of antiemetic. Successful management is also related
mild stimulant in one pill rather than the multiple pills the
to providing antiemetics around the clock.
patient was taking previously. The hospice physician also
prescribes 10 mg of metoclopramide every 6 hours, with
additional 10-mg doses as needed for severe nausea. Within 3 Classes of Antiemetics
days Teresas nausea and dry heaves are under control, she is
There are currently 10 classes of drugs used as antiemetics in
having regular bowel movements, and she is able to take
palliative care: butyrophenones, prokinetic agents, cannabi-
some uids, food, and medications by mouth.
noids, phenothiazines, antihistamines, anticholinergics, steroids,
o]
benzodiazepines, 5-HT3 receptor antagonists, and NK1 recep-
tor antagonists.
o] Mannix3 recommends seven steps to choosing an appropri-
Pharmacological Palliative Management ate antiemetic protocol for palliative care. The rst step involves
of Nausea and Vomiting identifying the likely cause(s) of the symptoms. In the second
step, the health care professional should try to identify the path-
Progress has been made in managing chemotherapy-induced way by which each cause is triggering nausea and vomiting (see
nausea and vomiting but not necessarily in nausea and vomiting Figure 93). In step three, it is helpful to identify the neuro-
experienced by patients with advanced disease requiring end- transmitter receptor that may be involved in the pathway, such
of-life care. The challenge is to provide appropriate antiemetic as the 5-HT3 receptor. Once the receptor is identied, step four
protocols for these patients in the setting in which they are requires selection of the most potent antagonist to that receptor.
receiving palliative care, while appreciating the demand for cost Step ve involves selecting a route of administration that will
containment in health care delivery. Individuals with advanced ensure that the drug will reach the site of action. Once the route
cancer range from pediatric patients to elderly patients and is chosen, step six is to titrate the dose carefully and give the
receive end-of-life care in many health care settings (e.g., home, antiemetic around the clock. Lastly, in step seven, if symptoms
hospitals, inpatient hospice units, hospice houses, and outpa- continue, review the likely cause(s) and consider additional
tient and ambulatory units). The array of antiemetics available treatment that may be required for an overlooked cause.
has increased (Table 93),3,12,20,3639 allowing for individualized The clinical practice guidelines developed by the American
protocols. Thus, it is important for nurses to continually ask Society of Clinical Oncologists (ASCO)40 provides levels and
the patient and family about nausea and vomiting and the effec- grades of evidence for the guidelines. The ve levels of evi-
tiveness of the treatment. Additionally, it is essential that nurses dence include:
use nonpharmacological methods to prevent and decrease nau-
Level I: Evidence is obtained from meta-analysis of multi-
sea and vomiting.
ple, well-designed, controlled studies.
In recent years, health care associations and groups of
Level II: Evidence is obtained from at least one well-
health care providers have developed recommendations or
designed experimental study
guidelines for the use of antiemetics in clinical practice. How-
Level III: Evidence is obtained from well-designed, quasi-
ever, only a few of these mention the use of antiemetics for ter-
experimental studies such as nonrandomized, con-
minally ill patients.22,37,4042
trolled, single-group, pre-post, cohort, time, or matched
According to Kaye28 the overall plan of management for
case-control studies
palliative care of nausea and vomiting should be as follows:
Level IV: Evidence is from well-designed, nonexperimental
1. Make an assessment. studies, such as comparative and correlational descrip-
2. Consider the causes. tive and case studies
3. Choose the antiemetic(s). Level V: Evidence is from case reports and clinical examples
Table 93
Antiemetic Drugs in Palliative Care
Dosage, Route,
Drug Indication and Schedule Side Effects Comments
Butyrophenones
Haloperidol Opioid-induced nausea, Oral: 0.55 mg Dystonias, dyskinesia, Side effects are less at
chemical and every 46 h akathisia low doses.
mechanical nausea IM: 5 mg/mL every 34 h Butyrephenones may
IV: 0.52 mg every 34 h be as effective as
Droperidol IV, IM: 1.252.5 mg phenothiazines, may
every 24 h have additive effects
with other CNS
depressants. Use
when anxiety and
anticipatory symptoms
aggravate intensity of
nausea and vomiting.
Prokinetic agents
Metoclopramide Gastric stasis, ileus Oral: 510 mg every Dystonias, akathisia, Infuse over 30 min to
24 h esophageal spasm, prevent agitation and
IV: 13 mg/kg every colic if gastrointestinal dystonic reactions; use
24 h obstruction, headache, diphenhydramine
fatigue, abdominal to decrease
cramps, diarrhea extrapyramidal
symptoms.
Domperidone Oral: 1030 mg every
24 h
PR: 3090 mg every
24 h
Cannabinoids
Dronabinol Second-line anti-emetic Oral: 210 mg every CNS sedation, dizziness, More effective in
46 h disorientation, younger adults
impaired
concentration,
dysphoria,
hypo-tension, dry
mouth, tachycardia
Phenothiazines
Prochlorperazine General nausea and Oral: 525 mg every Drowsiness, irritation, May cause excessive
vomiting. Not as 34 h dry mouth, anxiety drowsiness in elderly,
highly recommended PR: 25 mg every 68 h hypotension, IM route is painful
for routine use in IM: 5 mg/mL every extra-pyramidal
palliative care 34 h side effects
IV: 2040 mg every
34 h
Thiethylperazine Oral: 10 mg every 34 h
IM: 10 mg/2 mL every
34 h
PR: 10 mg every 68 h
Trimethobenzamide Oral: 100250 mg every
34 h
IM: 200 mg/2 mL every
34 h
(continued )
Table 93
Antiemetic Drugs in Palliative Care (continued )
Dosage, Route,
Drug Indication and Schedule Side Effects Comments
Antihistamines
Diphenhydramine Intestinal obstruction, Oral: 2550 mg every Dry mouth, blurred Cyclizine is the least
peritoneal irritation, 68 h vision, sedation sedative, so it is a better
vestibular causes, IV: 2550 mg every 68 h choice.
increased ICP
Cyclizine Oral: 2550 mg every 8 h
SQ: 2550 mg every 8 h
Anticholinergics
Scopolamine Intestinal obstruction, Sublingual: 200400 mcg Dry mouth, ileus, Useful if nausea and
peritoneal irritation, every 48 h urinary retention, vomiting co-exist with
increased ICP, excess SQ: 200400 mcg every blurred vision, colic.
secretions 48 h possible agitation
Transdermal: 500
1500 mcg every 72 h
Steroids
Dexamethasone Given alone or with Oral: 24 mg every 6 h Insomnia, anxiety, Compatible with 5-HT3
other agents for IV: 24 mg every 6 h euphoria, perirectal receptor antagonists
nausea and vomiting burning or metoclopramide.
Taper dose to prevent
side effects.
Benzodiazepine
Lorazepam Effective for nausea and Oral: 12 mg every 23 h Sedation, amnesia, Use with caution with
vomiting as well as IV: 24 mg every 48 h pleasant hepatic or renal
anxiety hallucinations dysfunction or
debilitated patients.
5-HT3 receptor antagonists

Ondansetron Chemotherapy, Oral, IV: 0.15 Headache, constipation, Indicated for moderate
abdominal 0.18 mg/kg every 12 h diarrhea, minimal to highly emetogenic
radiotherapy, sedation chemotherapy. Ideal
postoperative nausea for elderly and
and vomiting pediatric patients.
Granisetron Oral: 1 mg every 12 h Effectiveness is
IV: 10 mcg/kg every 12 h increased if used with
dexamethasone.
Miscellaneous
Octreotide acetate Nausea and vomiting SQ (recommended), IV Diarrhea, loose stools, May interfere as others
associated with bolus (emergencies): anorexia, headache, with insulin and
intestinal obstruction 100600 mcg SQ in dizziness, seizures, -adrenergic blocking
24 doses/day anaphylactic shock agents; watch liver
enzymes.
Dimenhydrinate Nausea, vomiting, Oral: 50100 mg q 4 h, Dry mouth, blurred Geriatric clients may be
dizziness, motion, not >400 mg/day vision, sedation more sensitive to dose.
sickness IM, IV: 50 mg prn
IM = intramuscular; SQ = subcutaneous; IV = intravenous; PR = per rectum; ICP = intracranial pressure; prn = as required; 5-HT = 5-hydroxytryptamine.
Sources: Baines (1997), reference 2; Mannix (2004), reference 3; Rhodes & McDaniel (2001), reference 13; Fallon (1998), reference 20; Enck (1994), reference 23;
Goodman (1997), reference 36; Gralla et al. (1999), reference 39; Gralla et al. (1999), reference 40.
There are four grades in the ASCO guidelines. They are: activity may increase with the use of cannabinoids, these drugs
should be used with caution in patients with hypertension or
A: There is evidence of Level I or consistent ndings from
heart disease or in those who are receiving psychomimetic
multiple studies of Levels II, III, and IV.
drugs.3,13,19,22,36,40,43,44
B: There is evidence of Level II, III, and IV, and ndings
Phenothiazines (see Table 93) were once considered the
are generally consistent.
mainstay of antiemetic therapy. The level of evidence for their
C: There is evidence of types II, III, and IV, but ndings
use is rated I by ASCO and the grade is A. These drugs, like
are inconsistent.
prochlorperazine and thiethylperazine, are primarily dopamine
D: There is little or no systematic empirical evidence.
antagonists. They have tranquilizing as well as antiemetic effects.
Butyrophenones are dopamine antagonists (D2 subtype) They have been used as single agents and in combination pro-
and are rated by the ASCO guidelines as Level I and grade A. tocols. One advantage has been that they are available in sev-
Haloperidol and droperidol are the drugs in this class, and they eral preparations (oral, rectal suppository, parenteral, and
are most potent at the CTZ (see Figure 93). Butyrophenones are sustained-release preparation). The phenothiazines are espe-
major tranquilizers, whose mode of action, other than dopamine cially effective for acute or delayed nausea. Because they have a
blockade, is not well understood. In general, these drugs are less different mechanism of action, they may be combined with 5-
effective at controlling nausea and vomiting than other drugs, HT3 receptor antagonists and dexamethasone. There is a high
except for the phenothiazines. They are effective, however, when risk for extrapyramidal side effects (e.g., dystonia, akathisia,
used in combination with other drugs, especially with the 5-HT3 dyskinesia, akinesia). These symptoms appear to be greater
receptor antagonists. Butyrophenones can be effective when in patients who are less than 30 years old. Frequently, 25 mg to
anxiety and anticipatory symptoms aggravate the intensity of a 50 mg of diphenhydramine is given to prevent the extrapyra-
patients nausea and vomiting. They can have severe side effects, midal side effects.3,13,19,22,36,40,43
including dystonic reactions, akathisia, sedation, and postural Antihistamines act on histamine receptors in the VC and on
hypotension.3,13,19,22,36,40 the vestibular afferents. Diphenhydramine is often used in com-
Prokinetic agents (see Table 93) include metoclopramide bination protocols to minimize the development of extrapyra-
and domperidone. ASCO rates these agents as Level I and grade midal side effects. Cyclizine is less sedative than scopolamine
A for nausea and vomiting. They are also called substituted ben- (an anticholinergic) and can be given subcutaneously (SQ).
zamides. Metoclopramide is the most commonly used drug in These are rarely used as single agents for nausea and vomiting
this category. It has some antidopaminergic activity at the CTZ in palliative care, and the ASCO guidelines rate the level of evi-
and stimulates 5-HT4 receptors, which helps to bring normal dence as II and grade as B.3,13,19,40,43
peristalsis in the upper gastrointestinal tract and to block 5-HT3 Anticholinergics currently are not used as frequently in
receptors in the CTZ and gut. Extrapyramidal side effects are antiemetic therapy. They do have an advantage in that they
common. Infusing the drug over 30 minutes and administering can be given sublingually, SQ, and transdermally. They have an
diphenhydramine 25mg to 50mg at the same time may lessen anticholinergic effect at or near the VC. Parasympathetic side
these side effects. Metoclopramide also enhances gastric empty- effects, like drying secretions, may sometimes be benecial or
ing, decreases the sensation of fullness caused by gastric stasis, troublesome because they cause dry mouth, ileus, urinary reten-
decreases the heartburn caused by chemotherapy, and slows the tion, and blurred vision. These drugs are effective at reducing
colonic transit time caused by the 5-HT3 receptor antagonists. peristalsis and inhibiting exocrine secretions and, thus, con-
Although initially used as a single agent, metoclopramide is now tribute to the palliation of colic and nausea.3,19
the main component of several combination protocols.13,22,40 Corticosteroids, especially dexamethasone, are frequently a
Cannabinoids (see Table 93), such as dronabinol, are component of aggressive antiemetic regimens.13,22,4547 The use
options for patients who are refractory to other antiemetics. of steroids remains controversial. They appear to exert their
These drugs presumably target higher CNS structures to pre- antiemetic effect as a result of their antiprostaglandin activity.
vent nausea and vomiting. According to the ASCO guidelines, Dexamethasone has an advantage because it is in oral and par-
there is Level I and grade A evidence that cannabinoids have enteral forms and is compatible in solution with 5-HT3 recep-
antiemetic activity when used alone or in combination with tor antagonists and metoclopramide. In general, corticosteroids
other agents. Marijuana is the best known cannabinoid, but are most effective in combination with other agents. The ef-
dronabinol is the plant extract preparation available for pre- cacy of ondansetron, granisetron, and metoclopramide can be
scriptive use. The semisynthetic agents are nabilone and levo- enhanced by adding dexamethasone.48 Use of corticosteroids
nantradol. Marijuana, however, may be more effective. The for 4 to 5 days can prevent delayed nausea and vomiting. How-
actual site of action is not known but thought to be at the cor- ever, the dose should be tapered after several days to decrease
tical level. Cannabinoids are especially helpful in younger or prevent insomnia, anxiety, euphoria, and other side effects
adults who do not have a history of cardiac or psychiatric ill- common to corticosteroids. A trial of high-dose steroids should
ness. Younger patients may have a more positive experience. be considered if there is increased intracranial pressure, hyper-
Older adults tend to have more hallucinations, feeling high calcemia, or malignant pyloric stenosis. They also should be
and sedated, though these side effects may be decreased by tried for advanced cancer when nausea is resistant to other
low-dose phenothiazines. Because the central sympathomimetic antiemetics.13,19,28,36,43,49 The ASCO guidelines suggest that the
level of evidence is II and grade is B for the use of single doses chlorotheophylline. It is not known how dimenhydrinate allevi-
of corticosteroids.40 ates nausea and vomiting. It is helpful for nausea, vomiting, and
The site of action for benzodiazepines, like lorazepam (see dizziness. There have been a few studies conducted with olanza-
Table 93), is the central nervous system. Lorazepam may be pine for the relief of nausea in patients with advanced cancer and
used alone but is more commonly used in combination proto- patients with delayed nausea51,52 Olanzapine is currently indi-
cols. The ASCO guidelines recommend that benzodiazepines cated for schizophrenia and bipolar mania. Further research is
be used in combination regimens (level of evidence II and needed to efcacy of this drug with terminally ill patients.
grade B).40 Additionally, lorazepam is a potent anxiolytic and
amnesic. The temporary amnesic effect may be useful in patients Combination Protocols
with anticipatory nausea and vomiting.3,13,19,22,36,43 Malik and
Khan50 found that lorazepam decreased the incidence of antic- Currently, combining antiemetic drugs appears to improve ef-
ipatory nausea and vomiting as well as acute emesis. Pediatric cacy, decrease side effects, and increase QOL. This practice is
patients may experience sedation and pleasant hallucinations. based on the theory that blocking different types of neurotrans-
Lorazepam should be used with caution in debilitated patients mitter receptors may offer better management of nausea and
or those with hepatic or renal dysfunction. vomiting. In some instances, single agents, such as granisetron,
Since 1986, when the selective blockade of 5-HT m receptors ondansetron, and prochlorperazine, may be used for this symp-
was shown to block vomiting associated with cisplatin, there has tom complex. However, the combination of a 5-HT3 receptor
been a rapid creation of new drugs and increased knowledge of antagonist and a corticosteroid may be the most effective
the sites and roles of 5-HT receptors. The 5-HT3 receptors have antiemetic regimen.3,13,36,43,53,54 The various agents used in com-
been discovered in the CTZ, in the VC (centrally), and in the bination are adjusted according to the individuals tolerance to
terminals of the vagal afferents in the gut (peripherally). The specic agents.
activities of these 5-HT3 receptor antagonists (see Table 93),
like ondansetron, granisetron, and dolasetron mesylate appear Routes of Administration
to be limited to serotonin inhibition. Therefore, the extrapyra-
midal side effects associated with dopamine antagonists are Nausea and vomiting may be treated with a combination of oral
eliminated. Ondansetron was the rst of these agents to become medications. If tolerated by the patient, this may be the most
available in 1991, followed by granisetron in 1994, and dolasetron cost-effective treatment and provide the best prophylaxis
mesylate in 1997. Each of these drugs may be given orally or because different drugs can attack from several sites and mech-
intravenously. The oral route is preferred when feasible for ease anisms of action.22 Unfortunately, other routes are needed if the
of use and cost. Granisetron is the most specic 5-HT3 receptor patient has severe vomiting or is unable to swallow. If the patient
antagonist and has the highest potency and a longer duration of has IV access, IV medications are appropriate. Some drugs may
action than ondansetron. All of these medications can be given be given by intramuscular (IM) injection, but this can be
to children and the elderly and have few side effects.3,13,19,22,36,38,40 painful and, thus, is usually avoided. Other options are to give
The ASCO guidelines state the level of evidence for these med- drugs by a continuous SQ infusion, rectal suppository or tablet
ications as effective single agents is I and the grade is A.40 Many in the rectum, sublingually, or by a transdermal patch. A contin-
clinicians feel that there are no major differences in the efcacy uous SQ infusion is useful for severe nausea and vomiting, to
and toxicity of the three approved drugs in this category.22 avoid repeated injections. It is also important to remember non-
Palonosetron is a pharmacologically distinct 5-HT3 antagonist drug methods in combination with antiemetic agents.28
that has recently been approved by the FDA. It appears to
have 100-fold higher afnity for the receptor compared to
ondansetron, granisetron and dolasetron.22 o]
As previously discussed, there is a new ligand-receptor pair Nonpharmacological Palliative Management
which has been described as having an important role in nau- of Nausea and Vomiting
sea and vomiting. This new class of drugs are called substance
p antagonists or neurokinin-1 antagonsists.22 Aprepitant is an Some literature exists related to nonpharmacological manage-
oral drug that acts as an NK-1 antagonist. It has been shown to ment of chemotherapy-induced nausea and vomiting,13,55,56
be effective with ondansetron and dexamethasone to prevent but there is little current literature concerning nonpharmaco-
acute and delayed nausea and vomiting.22 logical techniques for patients receiving end-of-life care. Non-
There are some additional miscellaneous agents that may pharmacological management of nausea and vomiting may
be helpful for terminally ill patients. Octreotide acetate is a involve simple self-care techniques (Table 94)18,23 or uniting
somatostatin analogue. Thus, it mimics the actions of the natural the body and mind using psychological interventions to control
hormone somatostatin and is long-acting. It may be helpful for physiological responses.57 There are many different nonphar-
nausea and vomiting associated with intestinal obstruction. macological techniques available today that could be used for
Specically, it inhibits gastric, pancreatic, and intestinal secre- palliative management of nausea and vomiting.
tions and reduces gastrointestinal motility. Another agent is Many nonpharmacological techniques used to control nau-
dimenhydrinate, which contains both diphenhydramine and sea and vomiting in patients with advanced cancer are classied
been few controlled studies on self-hypnosis. Most of the

Table 94 research has been performed with children and adolescents
Nonpharmacological Self-Care Activities for Nausea and
because they are more easily hypnotized than adults.6166 Addi-
Vomiting
tionally, this research has been with individuals receiving
Provide oral care after each episode of emesis. chemotherapy and not individuals with advanced cancer receiv-
Apply a cool damp cloth to the forehead, neck, and wrists. ing palliative care.13 The results of the research have been mixed,
Decrease noxious stimuli such as odors and pain. with only some patients having a decrease in the frequency,
severity, amount, and duration of vomiting as well as duration of
Restrict uids with meals.
nausea. Unfortunately, hypnotic methods are not standardized,
Eat frequent small meals. but all include relaxation and relaxation imagery. The advan-
Eat bland, cold, or room-temperature food. tages include an absence of side effects, no need for equipment,
Lie at for 2 hours after eating. minimal physical effort, and minimal training. Health care pro-
Wear loose-tting clothes. fessionals, including nurses, have successfully taught patients
Have fresh air with a fan or open window. self-hypnosis techniques.61,62 In a study by Marchioro and
associates,66 all subjects showed a complete remission of antic-
Avoid sweet, salty, fatty, and spicy foods.
ipatory nausea and vomiting and major responses regarding
Limit sounds, sights, and smells that precipitate nausea postchemotherapy nausea and vomiting; however, these were
and vomiting.
not terminal patients. Research is desperately needed to evaluate
Sources: Ladd (1999), reference 18; Enck (1994), reference 23.
which behavioral interventions are most effective in patients of
all ages with advanced disease receiving end-of-life care.
as behavioral interventions. This involves the acquisition of Progressive Muscle Relaxation

new adaptive behavioral skills. These techniques may include
relaxation, biofeedback, self-hypnosis, cognitive distraction, Progressive muscle relation (PMR), also called active relax-
guided imagery, and systematic desensitization. Other thera- ation, involves individuals learning to relax by progressively
pies that are gaining in popularity are acupuncture, acupres- tensing and then relaxing different muscle groups in the body.
sure, and music therapy (Table 95).13,55,56,58 Passive relaxation is considered relaxation that does not involve
Behavioral interventions can be used alone or in combina- active tensing of the muscles. Often, PMR is used in combina-
tion with antiemetic drugs to prevent and control nausea and tion with guided imagery, and research has shown that it can
vomiting. All of these techniques attempt to induce relaxation decrease chemotherapy-induced nausea and vomiting as well
as a learned response. They differ only in the manner in which as depression and anxiety.55,58,59,6769 However, research has not
they induce relaxation.55 been conducted on terminally ill patients receiving palliative
Behavioral interventions have been found to be effective care.13 When reviewing the research that has been performed
for the following reasons: (1) they produce relaxation, which on chemotherapy-induced nausea and vomiting, PMR has
can decrease nausea and vomiting; (2) they serve as a distrac- been shown to decrease the following: anxiety and nausea
tion from the stimulus causing nausea and vomiting; (3) they during chemotherapy, physiological indices of arousal (e.g.,
enhance feelings of control and decrease feelings of helpless- heart rate and blood pressure), anxiety after treatment,
ness as patients are actively involved in decreasing nausea and depression after treatment, and the occurrence of vomiting.69
vomiting; (4) they have no side effects; (5) they are easily self- One study70 was conducted with 60 Japanese cancer patients
administered; and (6) they can be cost effective because they receiving chemotherapy protocols similar to those used in the
require limited time by a health care professional to teach United States. The subjects were randomly assigned to the
these interventions.10,55,5860 There is currently no denitive PMR intervention or a control group. The ndings veried the
research that indicates which method is most effective; rather, effectiveness of PMR in reducing the total scores used to mea-
it appears to depend on individual preference. sure nausea, vomiting and retching, and subjective feelings of
anxiety. Another study71 was performed with Chinese breast
Self-Hypnosis cancer patients receiving chemotherapy to evaluate the use of
PMR as an adjuvant intervention to pharmacological antiemetic
Self-hypnosis was the rst behavioral technique tested to con- treatment. The use of PMR signicantly decreased the duration
trol the symptom complex of nausea and vomiting. This used of nausea and vomiting in the experimental group as compared
to be considered a psychoanalytical approach in psychother- to the control group.
apy, but more recently has been categorized as a behavioral Interestingly, as many as 65% of patients who learned PMR
intervention. With this intervention, individuals learn to invoke while undergoing chemotherapy continued to use it even after
a physiological state of altered consciousness and total-body chemotherapy.72 It can also be easily taught to health care pro-
relaxation. This results from the individuals intensied atten- fessionals and to patients to apply on their own.59,73 However,
tion receptiveness, and increased receptiveness to a specic there remains much to learn about the use of PMR with termi-
idea.55,56 As with many of the behavioral techniques, there have nally ill cancer patients suffering from nausea and vomiting.
Table 95
Nonpharmacological Interventions for Nausea and Vomiting
Techniques Description Comments
Behavioral
interventions
Self-hypnosis Evocation of physiological state of altered consciousness Used to control anticipatory nausea and vomiting
and total body relaxation. This technique involves a Limited studies, mostly children and adolescents
state of intensied attention receptiveness and No side effects
increased receptiveness to an idea. Decreases intensity and duration of nausea
Decreases frequency, severity, amount, and duration
of vomiting
Relaxation Progressive contraction and relaxation of various Often used with imagery
muscle groups Can use for other stressful situations
Easily learned
No side effects
Decreases nausea during and after chemotherapy
Decreases duration and severity of vomiting
Not as effective with anticipatory nausea and vomiting
Biofeedback Control of specic physiological responses by receiving Two types: electromyographic and skin temperature
information about changes in response to induced Used alone or with relaxation
state of relaxation Easily learned
No side effects
More effective with progressive muscle relaxation
Imagery Mentally takes self away by focusing mind on images Most effective when combined with another
of a relaxing place technique
Increases self-control
Decreases duration of nausea
Decreases perceptions of degree of vomiting
Feel more in control, relaxed, and powerful
Distraction Learn to divert attention away from a threatening situation Can use videos, games, and puzzles
and toward relaxing sensations No side effects
Decreases anticipatory nausea and vomiting
Decreases postchemotherapy distress
Desensitization Three-step process involving relaxation and visualization Inexpensive
to decrease sensitization to aversive situations Easily learned
No side effects
Decreases anticipatory nausea and vomiting
Other interventions
Acupressure Form of massage using meridians to increase energy ow Inconclusive literature support
and affect emotions Acupressure wrist bands may be helpful to decrease
nausea and vomiting
Music therapy Use of music to inuence physiological, psychological, Often used with other techniques
and emotional functioning during threatening situations No side effects
Decreases perceptions of degree of vomiting
Biofeedback of EMG biofeedback is to induce a state of deep muscle relax-

ation from tense muscles. The purpose of ST is to prevent skin
Biofeedback is a behavioral technique by which patients learn to temperature changes that precede nausea and vomiting.55,59,62
control a specic physiological response (e.g., muscle tension) Recently, research has shown that biofeedback may help
by receiving information about moment-to-moment changes individuals achieve a state of generalized relaxation.59,62,74,75
in that response. Two specic types of biofeedback include elec- However, research has not shown EMG or ST biofeedback to
tromyography (EMG) and skin temperature (ST). The purpose be as effective as PMR alone or biofeedback with PMR at
decreasing chemotherapy-induced nausea and vomiting.74 Research with adults has demonstrated that cognitive distrac-
Therefore, little denitive data exist regarding biofeedback as a tion can signicantly decrease postchemotherapy nausea,
behavioral technique for chemotherapy-induced nausea and whether patients have low or high anxiety.83 Whether cognitive
vomiting and even fewer data to demonstrate that either EMG distraction, such as video games, would be effective at decreas-
or ST is effective at decreasing this symptom complex with tering nausea and vomiting in patients receiving end-of-life-care
minally ill patients. requires further research. Certainly, it is worth discussing this
technique with patients.
Guided Imagery
Systematic Desensitization
Guided imagery allows individuals with nausea and vomiting
to mentally take themselves away from their current site to a Systematic desensitization is a standardized intervention that
place that is relaxing. Individuals may choose a vacation spot, has been used to counteract anxiety-laden maladaptive res-
a safe place, a specic place at home, or any pleasant place. It is ponses such as phobias.58 There are three key steps to the desen-
believed that when individuals imagine what they would usu- sitization process. First, the individual is taught a response,
ally feel, hear, see, taste, and smell at their pleasant spot, they such as PMR, that is incompatible with the current maladap-
can mentally block the negative conditioned stimuli from the ce- tive response (e.g., chemotherapy-induced nausea and vomit-
rebral cortex and prevent nausea and vomiting. It is possible that ing). After this rst step, the individual and teacher create a
the body physiologically responds to the created image rather hierarchy of anxiety-provoking stimuli related to the feared sit-
than to the negative conditioned stimuli.5557,76 uation (events related to receiving chemotherapy such as driv-
Research has suggested that guided imagery, or visualization, ing to the clinic, entering the treatment room, and seeing the
can facilitate relaxation, decrease anxiety, decrease anticipatory chemotherapy nurse). This hierarchy of anxiety-provoking
nausea and vomiting, and increase self-control.7779 Guided stimuli range from the least to the most frightening. In the last
imagery has also been assessed in combination with music ther- step, the individual uses the alternative response while system-
apy.79 When the results were compared to the pretest measures of atically visualizing the increasingly aversive scenes related to
nausea and vomiting, the duration of nausea was shorter with chemotherapy and nausea and vomiting.55,58,62,8486
music therapy combined with guided imagery than preinterven- Early studies demonstrated that systematic desensitization
tion. Interestingly, the subjects perceptions of the occurrence of can be effective with anticipatory nausea and vomiting associ-
nausea remained unchanged. The degree of vomiting was also ated with chemotherapy.73,84,87,88 Specically, systematic desen-
reduced signicantly, and there was a trend toward a decreased sitization has decreased the frequency, severity, and duration of
duration of vomiting observed with the music therapy/guided anticipatory nausea and vomiting. Additionally, systematic
imagery intervention. In a more recent study,80 patients who desensitization signicantly decreased the duration and sever-
received guided imagery plus the standard antiemetic therapy ity of posttreatment nausea. Research has also shown that this
exhibited a signicantly more positive response to chemother- particular behavioral technique can be effectively implemented
apy. Unfortunately, guided imagery did not have an effect on by a variety of trained health care professionals (e.g., nurses,
patients perceptions of the frequency of nausea and vomiting or physicians, and clinical psychologists).84 Currently, research
the distress associated with these symptoms. The subjects did, supports the use of this technique as an inexpensive, effective,
however, express that they felt more prepared, in control, power- nonpharmacological treatment for chemotherapy-induced nau-
ful, and relaxed when using guided imagery. sea and vomiting; but there is little research with health care
From the limited research, it appears that guided imagery professionals effectively implementing this as a palliative care
may be most effective at decreasing nausea and vomiting associ- technique. It is important for trained nurses to begin to teach
ated with chemotherapy and only when it is combined with this technique to patients who might benet when terminally
another nonpharmacological technique, such as PMR or music ill and suffering from nausea and vomiting.
therapy. There is little research that has examined guided
imagery alone or in combination with another behavioral tech- Other Nonpharmacological Interventions
nique for patients receiving palliative care. Certainly, oncology
nurses could instruct patients with advanced cancer in all set- Acupuncture and acupressure are Eastern health care thera-
tings regarding guided imagery alone or with another technique. pies that are gaining awareness in oncology nursing and pallia-
tive care. Acupressure is a form of massage that uses specic
Cognitive Distraction energy channels known as meridians. Tsubos are acupuncture/
acupressure points. Tsubos are points of decreased electrical re-
Cognitive distraction is also known as attentional diversion. sistance running along the bodys energy pathways that form
This behavioral technique is thought to act by focusing an the meridian system. It is believed that stimulating the tsubo
individuals attention away from nausea, vomiting, and the improves energy flow, affects organs distant from the area
stimuli associated with these phenomena.55,56,58,59,62,81 Research being stimulated, and positively affects emotions.55,89 Most
has shown that simply distracting children and adolescents by studies have been performed with chemotherapy-induced
video games can decrease anticipatory nausea and vomiting.81,82 nausea and vomiting and not as palliative care techniques for
nausea and vomiting.9094 Some studies have shown acupunc- rather than being disruptive.104 Music therapy is an intervention
ture on P6 (Neiguan point) to be effective at decreasing nausea that can be initiated independently by nurses in all settings for all
and vomiting for 8 hours, and if acupressure is applied imme- oncology patients and individualized for each patient. Addition-
diately after P6 acupuncture, there is a prolonged antiemetic ally, music as an intervention for patients with advanced cancer
effect.9193 Aglietti and colleagues95 treated women receiving receiving end-of-life care would require less time and energy to
cisplatin with metoclopramide, dexamethasone, and diphen- implement than relaxation or guided imagery and, therefore,
hydramine with and without acupuncture. Patients had a tem- may be less taxing for the terminally ill patient. Certainly, music
porary acupuncture needle for 20 minutes during the infusion therapy in combination with antiemetic therapy warrants
of chemotherapy and then a more permanent needle 24 hours further study as a way to signicantly decrease the distressing
after chemotherapy. Acupuncture did decrease the intensity symptoms of nausea and vomiting.
and duration of nausea and vomiting, but the investigators
commented that it was difcult to perform acupuncture in
daily practice. Dibble and associates96 conducted a pilot study o]
with women undergoing chemotherapy for breast cancer and Nursing Interventions
reported that nger acupressure decreased nausea. An NIH
Consensus Conference has stated that acupuncture for adult Palliative care is by denition active total care, thus, it is essential
postoperative and chemotherapy-related nausea and vomiting that nurses provide active care to relieve nausea and vomiting for
is efcacious.97 Additionally, several reviews of acupuncture and terminally ill patients. Some of the important palliative care
acupressure have concluded that these are efcacious methods interventions recommended by the National Comprehensive
for relieving nausea and vomiting.98,99 One study has been con- Cancer Network (NCCN) palliative care guidelines are to pro-
ducted on terminally ill patients. Unfortunately, the investiga- vide adequate symptom management, to let the patient know
tors found that acupressure wristbands were ineffective at that comfort is one of the primary concerns, to anticipate patient
decreasing the intensity or frequency of nausea and vomiting.100 and family needs, to involve the family in care, and to educate the
The investigators experienced difculty in obtaining complete patient and family.41 As discussed in this chapter, the NCCN
data and found subject recruitment a problem. Thus, studies on guidelines include the need to continue to assess and to treat
terminally ill patients need to be repeated and extended to con- symptoms and quality of life to determine if the status warrants
rm the usefulness of acupuncture or acupressure, even though changes in interventions. This is a key role that nurses should
research with terminally ill patients is difcult to conduct. play related to nausea and vomiting in terminally ill patients.
Music therapy has been used with patients to prevent or Based on the current lack of literature on palliative care for
control nausea or vomiting. This involves the application of symptoms such as nausea and vomiting,1,13 it is vital that nurses
music to produce specic changes in behavior. The main in all settings (e.g., administrators, clinicians, educators, and
objective in the past has been to inuence the patients physio- researchers) lead the way in learning how to manage these
logical, psychological, emotional, and behavioral well-being.101 symptoms appropriately for terminally ill patients. From a clin-
Music therapy has most often been used in combination with ical perspective, nurses need to provide initial and ongoing
other nonpharmacological techniques. Few studies have been assessment of the patients symptom experience, implement
conducted on the ability of music therapy to decrease nausea appropriate drug and nondrug interventions, evaluate all
and vomiting in cancer patients.13 Most of the studies have not interventions, and provide patient and family education.
used music therapy as a single intervention and have assessed Administrators play a key role in providing the resources nec-
nausea and vomiting only related to chemotherapy. Frank79 essary for clinical nurses to give quality, but cost-effective, pal-
combined music therapy with guided imagery. The duration liative care in all settings (hospitals, inpatient hospice units,
of nausea and the patients perceptions of the degree of vom- hospice houses, homes, and outpatient/ambulatory units).
iting were decreased; however, the patients perceptions of Family caregivers are also involved with managing nausea
nausea did not change, and there was only a slight decrease in and vomiting, as with all aspects of end-of-life care. They often
the duration of vomiting. Standley102 used music therapy are responsible for overall symptom management, emotional
alone as an intervention and assessed the effects on the fre- support, support of daily activities, administering medica-
quency and degree of anticipatory nausea and vomiting, as tions, providing nutrition, and performing other aspects of
well as vomiting during and after chemotherapy. The individ- care. Additionally, the family is frequently the communication
uals who received the music intervention reported less nausea link between the patient and the nurse. Nurses depend heavily
and a longer time before nausea began. Ezzone and colleagues103 on family members for information about patients, especially
evaluated whether a music intervention would decrease bone when patients deteriorate. Thus, it is essential that family be
marrow transplant patients perceptions of nausea and number involved in any education given to the patient. Education is an
of episodes of vomiting while receiving high-dose chemother- important tool for family members to have if they are to func-
apy. Signicant differences were found, with the music therapy tion effectively as a team.105
patients having less nausea and fewer episodes of vomiting. First, patients and family need to be taught how to system-
Generally, music such as classical, folk, pop, or jazz is best. The atically assess the patients nausea and vomiting. They may use
music should be quiet and should create a calm background a log, such as the one developed by Goodman36 (see Figure 93).
It is helpful to teach the patient and family members to rate the After a hospice-team discussion and talking to the patient
distress caused by these symptoms on a scale of 0 to 10. This and family, several changes are made. The order for the fen-
provides more accurate information regarding the intensity tanyl transdermal patch is changed to three 100-mcg patches
and/or relief of symptoms. The patient and family need to be every 48 hours. The hyrocodone tables are changed to fen-
taught problem-solving skills for specic situations (e.g., when tanyl oral transmucosal fentanyl citrate (Actiq). This is
they can give an extra dose of antiemetic) and self-care activ- started at 200 mcq orally four times per day as needed for
ities (see Table 94). The importance of taking antiemetics on a breakthrough pain and titrated upward to 600 mcg. Prochlor-
schedule and as prescribed should be reinforced. Information perazine is changed to metoclopramide 10 mg P.O. every
regarding medications and instructions for self-care should be 6 hours around the clock, with an additional 10 mg as needed
provided in written form. Specic instruction should be given for severe nausea. Dexamethasone is added at 4mg P.O. three
as to when to call the physician or nurse. Lastly, it is helpful to times per day to help with nausea and anorexia. Lorazepam is
teach nonpharmacological methods for decreasing nausea and ordered at 1 mg P.O. every 6 hours as needed for anxiety.
vomiting (e.g., music therapy or relaxation). Additionally, you teach VA and his family how to use PMR
Nurse educators must begin to incorporate end-of-life with imagery. After 3 days, the patients persistent pain level
issues and symptom management for terminally ill patients has decreased to 2 to 4 out of 10, breakthrough pain level has
into the nursing curriculum and into textbooks. Educators decreased to 1 to 3 out of 10, nausea has decreased to 3 to 4
can work collaboratively with clinicians to develop educa- out of 10, and he is taking lorazepam only once per day for
tional tools for patients and families (pamphlets, videos, and anxiety. Additionally, VA is using PMR and imagery with
audiotapes). Additional research is desperately needed regard- the help of his family three times per day, and his family
ing appropriate antiemetic regimens, nonpharmacological decides to take him home.
interventions, appropriate self-care activities, and QOL issues o]
for patients receiving palliative care. Nurse researchers can be
actively involved in this research and in the dissemination of the
results to clinicians and educators. Nurse researchers should o]
design studies using prospective, longitudinal models, adequate Conclusion
sample sizes, and appropriate control groups. Findings should be
reported in terms of clinical and statistical signicance. Through A major goal of palliative care is to improve QOL by decreasing
collaborative efforts, nurse administrators, clinicians, educators, undue suffering. This can be achieved through symptom man-
and researchers can help to decrease the incidence of nausea and agement, such as adequate treatment of nausea and vomiting
vomiting and improve the QOL of terminally ill patients. in terminally ill patients. It is often difcult for nurses to meet
the challenge of providing palliative care when there is a limited
9= amount of research or literature to guide interventions for
case study 2 symptom management. This body of research and literature is
VA, a 62-Year-Old Man Who Wants to Be at Home growing but signicantly less than the information available
related to symptom management for patients receiving active
VA, a 62-year-old man with metastatic lung cancer, is admitted cancer treatment. Nurses in all settings (e.g., administrators,
to a palliative care unit because his family can no longer care clinicians, educators, and researchers) need to help increase our
for him at home. He has severe bone pain, severe nausea, knowledge base and skills in the areas of symptom manage-
anorexia, anxiety, and panic attacks. He has told the hospice ment and QOL issues for patients receiving end-of-life care.
team and his family that he wants to be at home when he dies. Vigilant assessment, appropriate use and evaluation of phar-
He currently has three 100-mcg fentanyl patches placed every macological and nonpharmacological interventions, appropri-
3 days and takes two hydrocodone (7.5-mg hydrocodone with ate patient and family education and support, and further
750-mg acetaminophen) tablets every 3 to 4 hours for break- research can accomplish this. Nausea and vomiting profoundly
through pain. VA takes one prochloraperazine every 8 hours affect all aspects (physical well-being, psychological well-being,
as needed for nausea. He has nothing prescribed for anxiety. social well-being, and spiritual well-being) of an individuals
You do a thorough assessment of his pain, nausea, and anxiety QOL, especially at the end of life. It is essential that nurses meet
and learn the following: (1) his persistent pain is a 6 to 9 out of the challenge to improve QOL for patients with advanced dis-
10, his breakthrough pain level is 8 to 10 out of 10, his fentanyl ease by decreasing or abolishing nausea and vomiting.
patches give pain relief for 48 to 52 hours (pain level decreases
to 2 to 3 out of 10 for the rst 40 hours of the patch), his
nausea is a 10 out of 10; (2) many years ago, he had learned references
transcendental meditation but has not practiced in 20 years;
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his funeral and will; (4) he is allergic to morphine; and (5) he nursing textbooks. Oncol Nurs Forum 1999;26:869876.
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10o] Constance M. Dahlin and Tessa Goldsmith
Dysphagia, Xerostomia, and Hiccups

It seems ridiculous that with everything else going on, that what bothers me the most is my difculty
swallowing and my dry mouth. Can you help this?Mark, 53-year-old ALS patient
Key Points Dysphagia and dry mouth are disturbing symptoms that occur
Dysphagia, dry mouth, and hiccups affect social interaction and frequently in progressive terminal illness. Hiccups, while less
cause unnecessary suffering. frequent, can be as distressing, adversely affecting quality of
Dysphagia has many etiologies and a multitude of management life. These problems impact the essence of pleasurable activi-
options. ties such as food, communication, intimacy, social interaction,
Xerostomia is a common complaint. as well as nutrition.
Hiccups, though seemingly harmless, can be extremely frustrating In a culture where food is both the core of life and a central
for patients and can be difcult to treat. focus of ones daily structure, disinterest in food and lack of
Comprehensive and regular mouth care relieves suffering and the ability to eat can cause distress for both patients and fami-
promotes comfort. lies. Patients lose interest and then withdraw from social inter-
action. Families, with all good intentions, keep focusing on
food. This creates a tension that may make the situation worse
because the focus shifts from the patient to the importance of
food. Thus, care for patients with terminal illnesses who are
experiencing dysphagia, hiccups, or dry mouth should focus
on the following principles: (1) the patient and family are the
unit of care, (2) relief of suffering is the primary goal, and (3)
care is best delivered with a plan that reects the underlying
aspect of the life-threatening disease.1
o]o]o]
DYSPHAGIA
9=
case study
TM, a Patient with Advanced Parkinsons Disease
TM, a 74-year-old retired chef, was diagnosed with Parkin-
sons disease in his mid 60s. His symptoms began with the
classic small-amplitude intention tremor of his right hand,
which was successfully treated with levodopa. Over the years,
his overall status declined slowly, to the point that he devel-
oped a shufing, festinating gait, with difculty getting up
from a chair and walking unassisted. His speech and voice
function became increasingly marked by overall weakness of
the muscles of articulation, with hypokinetic dysarthria and
195
impaired speech intelligibility, hypophonia (reduced vocal lost his desire for water. Over the next few weeks, TMs pul-
loudness), and a masked facial appearance. He gradually lost monary status deteriorated, so much so that supplemental
his independence with activities of daily living and required oxygen and morphine were required because of difculty
assistance for dressing, bathing, and even feeding himself. breathing. The family opted not to treat the recurrent pneu-
Furthermore, the weakness of the oral articulators had an monias, and eventually TM passed away at home in the care of
impact on chewing and swallowing. Over the past year, TM his family, who upheld his wishes to avoid articial hydration
began to hold food in his mouth for extended periods of and nutrition.
time before he would begin the process of mastication. His o]
chewing was slow and deliberate paired with his weak
tongue muscles, and increasingly he would drool while eat-
ing. TM gradually began to lose weight, became more o]
sedentary, and was markedly depressed at the loss of his Denition
functional independence.
TMs wife became increasingly concerned about her hus- Dysphagia is dened as difculty swallowing food or liquid.
bands declining status, especially the onset of coughing and Typically, chronic difculty swallowing affects the efciency
choking while drinking and eating. Her concern was ampli- with which oral alimentation is maintained. In addition, air-
ed by the need for a hospital admission for the third pneu- way protection or swallowing safety can be threatened. Patients
monia in 6 months. This last admission prompted a referral may complain of food getting caught along the upper digestive
to the speech language pathologist to evaluate TMs swallow- tract anywhere from the throat to the esophagus. In addition,
ing safety. The evaluation ndings revealed a cachectic and diversion of food or liquid into the trachea may occur, causing
reserved gentleman who displayed considerable weakness of aspiration, choking, or, in severe cases, asphyxiation. Chronic
the lips, jaw, and tongue muscles, with drooling at rest. His difculty swallowing can be both frustrating and frightening
face was expressionless and his voice was low in volume and for patients. Because nutrition is compromised, generalized
gurgly in quality. He was unable to control liquids in his weakness, appetite loss, and weight loss may ensue. In severe
mouth, and mastication of solid foods was slow and disor- cases, malnutrition may occur. Aspiration pneumonia may
ganized. He coughed weakly and inconsistently while drink- also occur, causing fevers, malaise, shortness of breath, and,
ing thin liquidsboth signs highly suspicious for aspiration. It rarely, death.
was clear TM had been struggling with eating and swallowing The psychological impact of dysphagia cannot be underes-
for a long time. Swallowing inefciency and aspiration of liq- timated. Eating or eating enough becomes a focus of care in
uids were conrmed on videouorographic examination. TM the chronically ill patient and is more evident in terminally ill
showed a moderate decrease in aspiration on thicker consis- patients with dysphagia. Since the essence of nurturing is
tencies of liquids and soft foods, but it was clear that the intertwined with the ability to provide and receive nourish-
effort it would take to meet his nutritional needs would be ment, the chronically ill patient, isolated from social interac-
immense for both he and his family. This episode of pneu- tions that take place around the consumption of food, becomes
monia had increased the rigidity of his extremities and exac- increasingly depressed. Caregivers often feel that nourishment
erbated his oral weakness. He was minimally communicative. is the one area in which they have had some opportunity to
The ndings of the examination were discussed with TM and nurture their loved one in the past. When this is no longer
his family. Given his poor pulmonary clearance, there was available to them, the palliative care challenge in managing
a high likelihood that the aspiration pneumonia would recur dysphagia is how to ensure comfort, even at the expense of
if he were to continue to eat by mouth, perhaps even requir- optimal nutrition and hydration. Understanding the physiol-
ing a repeat hospitalization. An alternative was articial ogy of normal and aberrant swallowing is critical to meeting
nutrition and hydration. this challenge.
During the months preceding his latest functional decline,
TM and his family had discussed his wishes for nonoral
o]
nutrition, wishes that he had communicated with his pri-
mary care team. He wanted to proceed with eating by mouth,
Physiology and Pathophysiology of Swallowing
understanding the risks. He did not wish to have a gastros-
tomy tube placed. A plan was devised with TMs wife to con- Normal Swallowing
tinue to feed him by mouth, acknowledging the inherent
risks. The goal was to keep him comfortable: small, frequent Swallowing involves the passage of food or liquid from the oral
meals with favorite foods; small sips of water before and cavity through the esophagus and into the stomach, where the
between meals to decrease oral dryness; crushed medica- process of digestion begins. Swallowing is an extremely com-
tions given in applesauce or with thickened liquids; upright plex physiological act, and demands exquisite timing and
positioning during mealtimes. His wife was taught how to coordination of more than 30 pairs of muscles under both vol-
complete these tasks. Eventually, TMs oral intake diminished untary and involuntary nervous control. Because humans
to a teaspoon of pureed foods here and there, although he swallow hundreds of times per day and are largely unaware of
Dysphagia, Xerostomia, and Hiccups 197
the activity, it is remarkable that difculties do not occur more grind into smaller pieces. Opening the jaw as well as rotary and
frequently. lateral movements achieves the masticatory process. Cohesive
For purposes of discussion, the act of swallowing is divided solid bolus formation is dependent on several factors: the
into three stages (Figure 101). In reality, these stages occur presence of enzyme-rich saliva to bind the material together,
simultaneously. The act of swallowing takes less than 20 sec- the ability of the tongue to gather particles from the sulci of
onds from the moment of bolus propulsion into the pharynx the cheek and the mouth oor, the prevention of food falling
until the bolus reaches the stomach. The longest phase com- out of the oral cavity anteriorly, and the premature spilling
prises the transit of the bolus through the esophagus. into the pharynx.2
The rst stage of swallowing (see Figure 101A), the oral Once the bolus is prepared and ready for swallowing, it is
stage, is responsible for readying the bolus for swallowing. positioned on the blade of the tongue and propelled into the
Bolus preparation is under voluntary control and can be pharynx (see Figure 101B). Contact with the tongue occurs
halted or changed at any point. The primary activities of mas- laterally on the hard palate and anteriorly on the central inci-
tication include gathering and placement of semisoft and liq- sors. The soft palate then elevates, permitting the bolus to
uid boluses on the tongue. It is during this stage that one takes enter the pharynx, while closing off the nasopharynx, to pre-
pleasure from the avor and texture of food through the vent regurgitation of the bolus into the nose. The oor mus-
chemoreceptors of the tongue and palate. The duration of the cles of the mouth contract as the tongue base depresses,
oral stage is variable, depending on the viscosity or consistency forming a chute down which the bolus can ow. Through a
of the food bolus and individual chewing styles. During mas- series of contractions by the intrinsic tongue muscles pressed
tication, the tongue moves the bolus to the dental arches to against the hard palate, the torpedo-shaped bolus is propelled
Figure 101. Stages of swallowing, beginning with voluntary initiation of the swallow by the
tongue (A), oral transit (B), pharyngeal stage of swallowing with airway protection (C) and (D),
and esophageal stage (E). Source: Logemann (1998), reference 2.
in a rolling motion from anterior to posterior into the pharynx. The esophageal stage or nal stage of swallowing (see Fig-
Depending on the consistency of the bolus, this stage lasts ure 101E) involves transport of the bolus from the upper
approximately 1 second. esophageal segment, through the lower esophageal segment,
The second stage of swallowing, the pharyngeal stage (see and into the stomach, a distance of approximately 25 cm.2,10
Figure 101C/D), is elicited as the posterior movement of the The esophageal stage is coordinated with the pharyngeal stage,
tongue and passage. The bolus passage stimulates the sensory with continued sequential contraction of muscles in the cervi-
impulses of the glossopharyngeal and vagus nerves, which cal esophagus. Like the pharyngeal phase of swallowing, the
travel to the afferent swallowing center located in the lower esophageal stage is under involuntary neuromuscular control.
medulla of the brain stem and then to the cortex. The pharyn- Unlike the pharyngeal stage, however, the speed of propaga-
geal and oral transit stages are closely associated. The oral cav- tion of the bolus is much slower, with a rate of 3 to 4 cm/second
ity and the pharynx become one continuous tube with the compared to 1 2 cm/second in the pharynx.7 The upper esoph-
entrance to the larynx closed off.2 The pharyngeal stage of agus consists of approximately 8 cm of striated skeletal muscle,
swallowing is the most complex, requiring the most precise beginning at the upper esophageal segment. The outer bers
timing and coordination. It is during this stage that the airway of the cervical esophagus are arranged longitudinally, while
is protected and the upper esophagus opens to accept the bolus. the inner bers are arranged in a circular conguration. As the
The process of airway protection, that is, closure of the air- bolus reaches the esophagus, the longitudinal muscles con-
way, is quite remarkable and intricate. There are several aspects tract, followed by contraction of the circular bers, constitut-
of airway protection. Respiration ceases for up to 2.5 seconds, ing the primary peristaltic wave. The primary wave carries the
with an average of 0.3 to 0.6 second for a single sip of liquid.2,3,4 bolus through the lower esophageal sphincter in a series of
Swallowing usually occurs during the expiratory stage of the relaxationcontraction waves. The lower esophageal sphincter
respiratory cycle, with expiration preceding and following the remains open until the peristaltic wave passes. A secondary
swallow. Laryngeal closure occurs from inferior to superior so peristaltic wave is generated where the striated muscle meets
that if material is present in the laryngeal entrance, it will be the smooth muscle and clears the esophagus of residue. This
extruded into the hypopharynx during the swallow. As the wave is reexive in nature and initiated by distention of the
oor of the mouth/tongue muscles contract to propel the bolus esophagus during the primary peristaltic wave.3,9
from the oral cavity, the larynx moves upward, closing the After passage of the bolus, the upper and lower esophageal
laryngeal vestibule. The vocal folds adduct simultaneously, and sphincters contract to their baseline tonic posture. This con-
the epiglottis begins to invert over the entrance of the larynx, tains the gastric contents within the stomach and prevents regur-
further protecting the airway. Opening of the upper esophageal gitation of material into the hypopharynx and airway.6
segment is the result of traction of the cricoid cartilage and lar-
ynx away from the posterior pharyngeal wall as the suprahyoid Pathophysiology of Swallowing
muscles contract, pulling the larynx upward and forwards.58,10
The greater the excursion of the larynx, the larger the diameter Difculty swallowing can occur during, within, or across any of
of the opening of the upper esophagus becomes.7 This move- the above-described stages, depending on the underlying dis-
ment creates a negative pressure in the esophagus, helping to ease. Evaluation and treatment of dysphagia is dependent on a
propel the bolus toward the distal esophagus. thorough understanding of the underlying aberrant anatomi-
As the bolus enters the pharynx, its tail is driven toward the cal and physiological components. It is helpful to conceptualize
hypopharynx and esophagus by the positive pressure gener- the process of bolus transfer through the oral cavity accord-
ated from the base of the tongue contacting the pharyngeal ing to a pistonchamber model proposed by McConnell and
walls. The pharyngeal constrictor muscles contract sequen- Cerenko in 1988.8 The oral cavity, or chamber, comprises the area
tially, and their topographic arrangement has the effect of extending from the lips anteriorly to the hard palate superiorly
stripping the bolus through the hypopharynx and clearing the and the pharyngeal wall posteriorly, bounded by the oor of
pharyngeal recesses. the mouth inferiorly.
The duration of the pharyngeal stage of swallowing is The tongue acts as the piston that creates pressure on the
approximately 1 second. The order of contraction of muscles is bolus to drive it into the esophagus. The ability of the oral cav-
invariant, but the timing of contraction depends on the viscosity to fulll its function as a closed chamber depends on the
ity and size of the bolus.3,5 The biomechanical events involved in integrity of a number of muscular contractions, which form
this stage of swallowing are under involuntary control and valves that open and close and are illustrated in Figure 102.
carefully sequenced in a pattern by the central swallowing cen- Bolus ow, and, hence swallowing, is affected if there is dys-
ter in the lower medulla. In the medulla, sensory feedback con- function in the chamber or the piston. If the chamber leaks,
tinually modulates the motor response. For example, if the residue, regurgitation, or aspiration may occur. Inefcient bolus
bolus is dense, the ring of a particular group of muscles of the ow results from weakness in the tongue-driving force on the
tongue may be increased, or the opening of the upper esopha- bolus or reduced contraction of the pharynx. Patients with
gus may last longer with a large bolus volume. If the sensory muscle weakness due to stroke, degenerative neuromuscular dis-
feedback loop is disturbed, the onset of the pharyngeal stage of ease, or neoplastic lesions involving motor and sensory function
swallowing may be delayed or, in severe cases, absent.2,3,6 of the lips and face may experience difculty containing the
o]
Prevalence and Impact
A multitude of diseases can affect the chamberpiston rela-

tionship, causing dysphagia, particularly in patients receiving
palliative care. These include degenerative neuromuscular dis-
eases, progressive cognitive decline disorders, recurrent or fatal
neoplastic nervous system or gastrointestinal obstructive lesions,
or pervasive debilitation from multisystem decline. In some
cases, side effects of treatment including radiation therapy or
chemotherapy, are the precipitating causative factors of dys-
phagia, whereas in other cases, the progressive nature of the
disease leads to unsafe and inefcient swallowing.
Understanding the physiological impact of the illness is
critical in evaluation of the swallowing disorder and the method
of management. For example, generalized weakness of the
oropharyngeal musculature may be evident in two patients,
one with a diagnosis of ALS who requires mechanical ventila-
tion, and one who has undergone further chemoradiation
therapy for a recurrent neck squamous cell carcinoma. In the
patient with ALS, the likely rapid progression would avoid the
suggestion of effortful swallows as a compensatory strategy to
clear boluses through the pharynx while swallowing due to
fatigue. On the other hand, in the patient with neck cancer,
encouraging effortful swallows to preserve motor exibility
Figure 102. Valves of the oral cavity illustrating twin function. may assist in protecting his airway to enable him to take some
food by mouth in the short term. The proceeding recommen-
dations describe some commonly encountered etiological cat-
bolus in the oral cavity, producing drooling. Patients with egories and their impact on swallowing.
severe dementia who are not aware of food in their mouth may
fail to close their lips. In the presence of facial weakness, for Neoplasms
example, patients with Parkinsons disease or ALS, the boluses
may pocket in the lateral buccal sulci, making retrieval dif- Tumors involving the nervous system as well as the head and
cult, especially if buccal and lingual weakness coexist. In cases neck and upper aerodigestive tract can interfere with swallowing.
of reduced sensation, pocketed food may remain in the oral
cavity for several hours, possibly increasing the risk of aspira- Brain Tumors. Brain tumors are classied into primary and
tion. Nasal regurgitation of liquids and particles of solids secondary types. Primary brain tumors are a diverse group of
occurs when the velopharyngeal port is dysfunctional. This is neoplasms arising from different cells of the central nervous
common in both palate cancer if treatment has involved resec- system. In contrast, secondary tumors originate elsewhere in
tion and in patients with progressive neuromuscular disease. the body and metastasize to the brain.
Weak tongue-driving force during swallowing results in a sig- It has been estimated that 34,000 new cases of primary
nicant amount of residue in the pharyngeal recesses, loss of brain tumors, malignant or benign, are diagnosed each year.11
control over the bolus, or incomplete laryngeal closure, caus- Although dysphagia is rarely the presenting symptom, swal-
ing aspiration before, during, or after the swallow. lowing problems can develop as the tumor increases in size
Valving of the larynx during the swallow is important for and compresses surrounding structures. The corticobulbar
prevention of aspiration into the tracheobronchial tree. Failure tracts involved in coordinating both the oral and pharyngeal
of the larynx to close due to timing or muscular incompetence stages of swallowing may be affected.
can result in aspiration of liquids or solid materials. Reduced Extrinsic tumors located around the brain stem, such as
sensory function and weakened laryngeal musculature impair acoustic neuromas and meningiomas, as well as those origi-
expectoration of aspirated material. Functional and reliable nating in the skull base, such as glomus jugulare, glomus vagale
laryngeal valving is crucial not only during oropharyngeal tumors, and chordomas, may compress or invade the lower
swallowing but also during periods of gastroesophageal reux, medulla. Hence, the cranial nerves and their nuclei that are
regurgitation, or emesis. Failure of the upper esophagus to critical for swallowing will be affected, with the specic swal-
open completely results in residue in the pyriform sinuses lowing impairment dependent upon which cranial nerves are
superior to the pharyngoesophageal segment and, if abun- affected. Compromise of the glossopharyngeal, vagus, and
dant, may spill over into the unprotected larynx and trachea.10 hypoglossal cranial nerves singly or in combination results in
the greatest swallowing dysfunction. The relative inaccessibil- If diagnosed early, esophagectomy or esophagogastrectomy
ity of these tumors for treatment is associated with recurrence, may be the treatment of choice. However, in cases of unre-
which, in turn, can result in increased cranial nerve and swallow- sectable advanced disease, symptomatic relief of dysphagia can
ing impairment.12 In addition to direct tumor effects, swallowing be accomplished by radiation therapy, esophageal dilation,
may be indirectly affected by depressed levels of consciousness yttrium-argon-garnet (YAG) laser electrocautery, chemother-
and reduced awareness that is associated with tumor progres- apy, or placement of an esophageal stent to open the lumen of
sion and treatment effects. the esophagus.1720 Each of these treatments is associated with
considerable side effects, including radiation-induced esophagi-
Head and Neck Cancer. Oropharyngeal dysphagia is almost tis and chemotherapy-induced mucositis. Esophageal perfora-
synonymous with advanced stage head and neck cancer because tion during laser surgery or dilation and migration of the
the vital structures involved in swallowing can be impaired by esophageal stents are potential complications from palliative
the tumor, as well as by treatment. Head and neck tumors are procedures.21 Frequently, jejunostomy tubes must be placed
located in a variety of sites in the oral cavity, including the bony for nonoral feeding.
structures, the lips, oor of the mouth, tongue, palate, and ton-
sillar fossa, as well as the hypopharynx, larynx, and nasophar- Progressive Neuromuscular Diseases
ynx. Treatment of head and neck neoplasms varies according to
cell type, location, tumor size, and presence of neck metastases. Amyotrophic Lateral Sclerosis. Amyotrophic lateral sclerosis, or
In the past decade, treatment for locally advanced head and ALS, is encountered with unfortunate regularity in patients on a
neck cancer has shifted from primary surgical resection to an palliative care service. A rapidly progressive degenerative disease
organ-sparing approach whereby chemoradiation therapy is of unknown etiology, ALS involves the motor neurons of the
the primary treatment and salvage surgery is reserved for brain and spinal cord.22,23 One quarter of ALS patients present
recurrent disease.13 This is most evident in patients with laryn- with difculty swallowing as their initial complaint, while other
geal cancer because of the morbidity associated with surgical patients begin with distal weakness that travels proximally to
resection of the larynx or laryngectomy.14 However, even with involve the bulbar musculature. As the disease progresses, there
the goal of organ preservation, signicant speech and swallow- is involvement with upper and lower motor neurons and the res-
ing dysfunction can occur. piratory system in the later stages. Respiratory failure is the
Many patients with advanced head and neck cancer are usual cause of death in patients with ALS because of weakness in
unable to resume oral nutrition as a result of the surgical resec- diaphragmatic, laryngeal, and lingual function.23
tion or secondary radiation or chemotherapy treatment. Sub- Typically, patients with ALS also experience a reduction in
sequent side effects include mucositis in the acute stage, as tongue mobility, affecting the ability to lateralize food for
well as muscle brosis, scarring, and dry mouth, even after chewing and to control material in the mouth. With disease
the completion of treatment. Some patients manage to com- progression, heavier foods, even pureed, are difcult to manip-
pensate for their dysphagia with changes in posture or diet ulate, resulting in signicant residue in the oral cavity and
consistencies suggested by speech language pathologists or hypopharynx. With oral musculature weakening, several con-
nutritionists. Other patients rely on oral nutritional supple- ditions occur: nasal regurgitation of uids and loss of control
ments delivered by mouth or gastrostomy tube. In any case, by over liquids, resulting in aspiration and coughing before the
the time the patient with advanced head and neck cancer swallow is triggered. Speech impairment parallels swallowing
reaches the terminal stage, he or she has already been coping difculty, affecting communication as well as alimentation.
with dysphagia and its very visible consequences for many Diet modications with calorie-dense foods and postural
months.15 alterations are necessary if oral intake is to continue. However,
many patients reach a point where the effort involved in eating
Malignant Esophageal Tumors. The incidence of malignant is too great and the pleasure is lost. If the patient chooses, a
esophageal tumors is approximately 3 to 4 per 100,000.16 Symp- gastrostomy tube is placed percutaneously to provide nutri-
tomatic presentation of dysphagia usually occurs late in the tion, and sometimes supplemental oral intake for pleasure is
disease, resulting in diagnosis of advanced malignancy. possible.2,22,23,24
Esophageal carcinoma can arise either from squamous cells of
the mucosa or as adenocarcinomas of the columnar lining of Parkinsons Disease. Parkinsons disease is a relatively common,
Barretts epithelium.16 Patients commonly complain of weight slowly progressive disease of the central nervous system, marked
loss and progressive dysphagia with solid foods rather than by an inability to execute learned motor skills automatically.17,18
liquids. In some cases, intractable cough may indicate exten- A classic triad of symptoms, resting tremor, bradykinesia,
sion of the tumor to the mediastinum or trachea. The presence and rigidity, accompanies Parkinsons disease. An imbalance
of local extension to the aorta, trachea, or other mediastinal between dopamine-activated and acetylcholine-activated neu-
structures eliminates the possibility of surgical resection. Sur- ral pathways in the basal ganglia causes the symptoms.18,20 The
vival rates are reported to be between 10% and 20% at 5 years,16,17 largest etiological group is idiopathic, however, Parkinson-like
and thus, palliative care is the foundation of management for symptoms may occur as a result of medications, toxins, head
this disease. trauma, or degenerative conditions.22
Dysphagia in Parkinsons disease is related to changes in dementia frequently encounter pneumonia, particularly in the
striated muscles under dopaminergic control and in smooth advanced stages of the disease.
muscles under autonomic control.23 The oral stage is associ- Dementia causes uctuating attention span, inactivity, agi-
ated with rigidity of the lingual musculature rather than weak- tation, confusion, and memory loss. These symptoms may
ness. Small-amplitude, ineffective tongue-rolling movements necessitate medications to calm the wandering, agitation, and
are observed as patients attempt to propel the boluses into the somnolence. Decreased consciousness predisposes patients
pharynx. As a result, pharyngeal swallow responses are delayed, to aspirate food and liquid.25 For additional information on
with aspiration occurring before and during the swallow. dementia, consult Chapter 20 of this textbook.
Expectoration of cough-aspirated material is weak because No single dysphagia prole exists for demented patients
of rigidity of the laryngeal musculature. Incomplete opening because of the variety of causes of the disease. However, com-
of the upper esophageal sphincter and esophageal dysmotil- mon observations include the inability to feed self indepen-
ity are also commonly observed in patients with Parkinsons dently and to remain focused for the duration of the meal. Some
disease.23,25 patients do not engage in the task of eating and swallowing.
In the early stages, antiparkinsonian medications such as They may hold food in their mouth for prolonged periods with-
levodopa improve exibility and speed during swallowing.26 out mastication or bolus formation, especially with uniformly
However, pharmacotherapy has only a limited amount to offer textured foods such as pureed items or bland foods. As a result of
dysphagic patients with severe symptoms and sometimes sensory impairments and lack of attention, the patient may fail
nonoral feeding is necessary.27 Pneumonia is one of the most to control the bolus in the mouth and lose it prematurely over
prevalent causes of death in patients with Parkinsons disease, the tongue base and into the larynx before the pharyngeal swal-
irrespective of whether the patients are fed orally or via a feed- low has been elicited, resulting in aspiration. Moreover, their dis-
ing tube.23 tractible or agitated behavior may prolong the feeding time and
hence reduce the amount of nutrition and hydration received.
Multiple Sclerosis. Swallowing difculty is uncommon in the Malnutrition and dehydration can produce medical complica-
early stages of multiple sclerosis.2,23,28,29 The scattered inam- tions that in turn exacerbate the cognitive decline even further.2
matory white- matter lesions observed in the central nervous
system result in varying combinations of motor, sensory, and Systemic Dysphagia
cognitive decits, which usually run a remittingrelapsing
course.2,23,28 Swallowing problems are less common in this dis- The broadest category of causes of dysphagia includes inam-
ease, occurring in the end stages in approximately 10% to 33% matory and infectious factors, which affect oral, pharyngeal,
of cases.29 Difculties arise with respect to the feeding process and esophageal stages of swallowing. Candida esophagitis can
because of hand tremors and spasticity. Sclerosed plaques can occur in an immunocompromised host, such as in patients
be found in the cortex and the brain stem and can affect cra- with AIDS or patients who have undergone chemotherapy.
nial nerves. Therefore, swallowing dysfunction will depend on Dysphagia for solids is greater than for liquids, and patients
the location of the lesions. frequently complain of food getting caught. Heartburn, nau-
Sometimes the swallowing dysfunction is mild and goes sea, and vomiting are other common complaints.16
unnoticed by the patients.2,23 In patients who complain of dys- Autoimmune inammatory disorders can affect swallow-
phagia, the most commonly observed symptoms are delayed ing in either specic organs or the immune system as a whole.
oropharyngeal swallowing initiation, reduced tongue strength, This category of diseases includes polymyositis, scleroderma,
and weak pharyngeal contractions. These result in pharyngeal and secondary autoimmune diseases. Patients with HIV/AIDS
residue after the swallow and a sense of food getting caught in have been shown to have aspiration on videouoroscopy.30
the throat. Sometimes intrinsic obstruction is observed, such as in
A coexisting feature of multiple sclerosis in the later stages Wegeners granulomatosis. With other disorders, there is exter-
is cognitive decline and dementia.23,29 Patients may be unaware nal compression, abnormal esophageal motility as in sclero-
of the act of eating and may be dependent on being fed. Fam- derma, or inadequate lubrication as in Sjgrens syndrome.
ily and caregivers require specic information to help patients Pharyngeal and esophageal symptoms are common. Poor
compensate for reduced awareness. esophageal motility restricts patients to small meals of pureed
or liquid substances, and eating duration is long and drawn
Dementia out. Patients report the sensation of solid foods getting caught
in the esophagus. Weight loss is frequent. Gastroesophageal
Dementia can result from several causes, including cumulative reux results from poor esophageal peristalsis.16,31,32
brain damage from multiple small cerebral infarcts in patients
with hypertension and diabetes, Alzheimers disease, advanced General Deconditioning
stages of other diseases such as Parkinsons or Huntingtons
disease, or multiple sclerosis. In addition, patients can demon- Multisystem diseases, including the more frequently encoun-
strate cognitive decline from chronic metabolic derangement, tered progressive diseases such as end-stage chronic obstruc-
sedating medications, and/or depression.2,22,25 Patients with tive pulmonary disease, coronary artery disease, and chronic
renal failure, cause insidious weakness. Weight loss in these medications. In some cases, there may be no overt coughing
patients is a common consequence because of reduced spells when the patient is eating or drinking, and the question
endurance for activities of daily living, including eating and of aspiration is entertained because of recurrent pneumonias.
swallowing. Patients with emphysema have difculty coordi- Speech language pathologists who are skilled at identifying
nating swallowing and respiration, and may be unable to tol- causes of oropharyngeal swallowing and who understand the
erate the obligatory cessation of breathing required for airway complications of dysphagia can be consulted to evaluate the
protection during the swallow. General immobility impairs swallowing behavior and to suggest compensatory management
spontaneous pulmonary clearance, resulting in an inability to strategies for alleviating the dysphagia. In terminally ill
expectorate material if it is aspirated. Patients are often dis- patients, it may be possible to determine the least restrictive
couraged and depressed by their loss of independence and diet that will provide the patient with safe and efcient oral
declining health. intake while at the same time preserving a small amount of
Medications can play a major role in causing dysphagia. pleasure associated with eating by mouth. The assistance of a
The number of medications increases proportionally to the gastroenterologist may be required in cases requiring palliative
number of disorders to be treated, but their reactions may be dilation of the esophagus.
exponential. Medications can affect lubrication of the oral
cavity and pharynx, reduce coordination or motor function, Clinical History
and cause local mucosal toxicity.33 This is discussed further
under xerostomia. Antipsychotic or neuroleptic medications A comprehensive understanding of the difficulties involved
can produce extrapyramidal motor disturbances, resulting in in swallowing depends in large part on a detailed history
impaired function of the striated musculature of the oral cav- from the patient and caregivers. Eliciting a description of the
ity, pharynx, and esophagus. Long-term use of antipsychotics patients complaints about swallowing is critical to painting a
may result in tardive dyskinesia, with choreiform tongue picture of the physiological basis of the problem and to inte-
movements affecting the coordination of swallowing. Delayed grating these hypotheses with attitudes and wishes about eat-
swallow initiation is a reported side effect of some neuroleptic ing and not eating. Details of disease progression along with
medications.34 the accompanying emotional and psychological impact on the
patient and the family should also be considered when deter-
mining the aggressiveness of a swallowing work-up and its
o] treatment.
Assessment The swallowing history may indicate a mechanical obstruc-
tion etiology or an underlying neuromuscular cause. Asking the
Approaching the evaluation of swallowing in the terminally ill patient which foods are easier and which are avoided, with
patient demands a holistic view and reaches beyond the phys- special focus on liquids versus solids, provides clues about the
iology of deglutition. While aspiration of food or liquid could location of the disorder. For example, patients who complain
realistically evolve into aspiration pneumonia, paradoxically, of solid food dysphagia and localize the area of difculty to the
committing a patient to nonoral feeding or non per os (NPO) throat may present with bolus propulsion problems, whereas
is also fraught with complications. It therefore behooves care- those who choke on liquids may have a sensory decit with
givers to carefully consider the multiple parameters in decision- mistiming of airway protection. It is important to note low
making about oral nutrition in the terminally ill patient. The diagnostic specicity regarding the patients localization of the
matter is not a simple decision of if the patient is aspirating problem with radiographic or endoscopic ndings.35
food he or she should not receive nutrition orally. Information about the patients current eating habits and
For the patient with a life-threatening illness, the goals diet should be elicited. Does the patient choke on all consis-
of the clinical swallowing evaluation are to (1) identify the tencies of solid foods and uids? Can the patient feed himself
underlying physiological nature of the disorder; (2) determine or herself ? How have meal times changed since the illness?
whether any short-range interventions can alleviate the dys- What is the total calorie intake the patient receives on a daily
phagia; and (3) collaborate with the patient, family, and care- basis, and how far short does this fall from the patients nutri-
givers on the safest and most efcacious method of nutrition tional requirements? Length of meal times and effort required
and hydration. are indicators of eating efciency. Additional areas of concern
Evaluation of dysphagia in patients receiving palliative care include appetite, factors that appear to alleviate or exacerbate
is best accomplished within a multidisciplinary framework the problem such as positioning, time of day, ability to swallow
where the patients needs and wishes are held paramount. The medication, and the presence of pain on swallowing.
patient may report coughing or choking sensations while eat- The current complaints with respect to the physiology of
ing or drinking. A number of patients underestimate their swallowing are as important as the patients previous attitudes
swallowing difculty, having accommodated to the gradually toward eating. These attitudes form the foundation on which
increasing dysphagia. Nurses and family caregivers usually management strategies are implemented. The patient with a
report symptoms of difculty swallowing when the problems poor appetite, fatigue, and a sense of hopelessness will under-
are witnessed regularly at meals and while administering standably be less compliant and less motivated to engage in
Table 101
Patient Complaints of Swallowing Difculty and Their Possible Physiological Correlates
Patients Complaint Physiological Impairment
Choking on uids Poor tongue control for oral manipulation

Impaired laryngeal closure
Delayed onset of pharyngeal swallow
Protracted meal times Weak chewing
Diminished endurance
Nasal regurgitation of uids Incompetent velopharyngeal mechanism
Difculty getting swallow started Reduced oral and hypopharyngeal sensation
Dry mouth Reduced or impaired saliva production
Solids caught in throat Weak tongue-driving force
Impaired laryngeal excursion fails to open upper
esophageal segment
Regurgitation or emesis after swallowing Poor esophageal motility or esophageal
obstruction
Sour taste in mouth after eating Gastroesophageal reux
Pain on swallowing Esophagitis, mucositis, esophageal obstruction
a complex treatment program. Additionally, the patient and secretions and swallowing. As mentioned earlier, xerostomia
caregivers should understand and consider the competing ben- may exacerbate, and in some cases even cause, difculty swal-
ets and risks regarding nutrition, with attention to the patients lowing. Patients who require supplemental oxygen delivered
preferences. via a nasal cannula frequently experience dryness in the oral
Table 101 lists frequently encountered complaints by pa- cavity. It is not uncommon to nd dry secretions crusted along
tients regarding swallowing and their potential physiological the tongue, palate, and pharynx in patients who have not eaten
counterparts. orally in some time. Dental caries and dentures that are not
well cared for can also contribute to a state of poor oral hygiene
Examination of Swallowing by Direct Observation as well as poor quality of life. Before giving the patient food or
liquids, even for assessment purposes, it is vital to clear the
Direct observation by a perceptive clinician of the patient oral cavity of extraneous secretions, using mouth swabs,
while eating, drinking, or taking medications can yield valu- tongue scrapers, toothbrushes, and oral suction if necessary.
able information about the underlying disorder. As discussed Dried oral secretions may loosen during trials of uid and
previously, the speech-language pathologist is vigilant for indi- inadvertently obstruct the airway.
cations of chewing inefciencies, aspiration, or obstruction.
Table 102 lists warning signs that can alert caregivers to pos- Evaluation of the Gag Reex. A word of caution is needed
sible swallowing problems. regarding the gag reex and oropharyngeal swallowing. Health
Usually, the clinician assesses the patients oral motor sen- care professionals routinely assess the gag reex as a predictor
sory function and cognitive communicative function, while of swallowing behavior. The gag reex and the pattern of neu-
observing the partaking of a variety of liquid and solid foods romuscular events comprising the swallow are very different,
(e.g., semisolid, soft solid, and, where appropriate, food requir- both in their innervation and in their execution. The gag reex
ing mastication). Speech and voice are analyzed, (bearing in is a protective reex that prevents noxious substances arising
mind the pistonchamber model described earlier) to deter- from the oral cavity or digestive tract from entering the air-
mine the underlying physiology of the swallowing disorder. way. It involves simultaneous constriction of the pharyngeal
Since aspiration may be silent in up to 40% of patients with and laryngeal muscles closing the airway and the pharyngeal
dysphagia, close attention is paid to occult signs of aspiration, lumen and results in anterior movement of the tongue.36 A
including wet vocal quality or gurgliness, frequent throat clear- gag reex is not elicited during the normal swallow.37 Unlike
ing, delayed coughing, and oral/pharyngeal residue.2 the pattern of events in the swallow, the gag reex can be
extinguished or reduced by a nasogastric feeding tube, endo-
Assessment of Oral Hygiene. The status of the oral mucosa tracheal intubation, or repeated stimulation. The pharyngeal
and general oral hygiene reect a patients ability to manage swallow response, which closes the airway and opens the
closure during swallowing and the efcient expectoration of

Table 102 material in response to aspiration. Audible strong cough at the
Indications of a Swallowing Disorder
glottis and pharyngeal contraction, which is necessary for
Reduced alertness or cognitive impairment bringing up a sputum sample, are required for functional air-
Coma, heavy sedation, dementia, delirium way protection. Patients who have weak voices and weak respi-
ratory force for coughing and pulmonary clearance are at
Impulsivity with regard to eating, playing with food,
inattention during eating
risk for pulmonary compromise. Airway protection cannot
be denitively discerned from a clinical evaluation alone.
Alterations in attitudes toward eating Although the clinician may palpate moderate superior and
Refusal to eat in the presence of others anterior laryngeal elevation on swallowing, may perceive a
Avoidance of particular foods or uids normal vocal quality, and may not observe cough on swallow-
ing, the patient may in fact be silently aspirating. Silent aspira-
Protracted meal times, incomplete meals, large amounts of
uids to ush solids
tion can only be conrmed denitively with an instrumental
examination. Previous radiation therapy, as well as cranial
Changes in posture or head movements during eating
nerve IX (glossopharyngeal) and X (vagus) decits, may all
Laborious chewing, multiple swallows per small bites contribute to the picture of silent aspiration. Depending on
Signs of oralpharyngeal dysfunction the stage of progression of the patients illness and overall
management goals, it may be prudent to identify silent aspira-
Dysarthria or slurred, imprecise speech
tion with the aim of limiting progression with behavioral
Dry mouth with thick secretions coating the tongue
strategies.
and palate
Wet voice with gurgly quality
Instrumental Evaluation
Drooling or leaking from the lips
Residual in the oral cavity after eating The clinical examination of swallowing is not conclusive regard-
Frequent throat clearing ing location of the swallowing disorder or the underlying phys-
Coughing or choking
iology. Radiographic or endoscopic evaluation of swallowing
are functional examinations providing valuable information for
Nasal regurgitation
management. Sometimes disease progression with its sequelae,
Specic patient complaints including inability to travel, inability to sit upright, wakefulness,
Sensation of food getting caught in the throat pain and/or somnolence, preclude instrumental examination.
Management shifts from maintenance to comfort, with com-
Coughing and choking while eating
pensatory behaviors being inappropriate.
Regurgitation of solids after eating
Pain on swallowing Videouorographic Evaluation of Swallowing. Radiographic
Food or uid noted in tracheotomy tube swallowing studies are helpful in understanding the underly-
Inability to manage secretions ing physiology of swallowing.2 The videouorographic swal-
Drooling lowing study (commonly known as modied barium swallow
study) examines oropharyngeal swallowing with the patient
Shortness of breath while chewing or after meals
positioned upright while swallowing a variety of consistencies
Regurgitation of food or uid through the nose
of barium-coated foods (liquids, semisolids, and solids) in
Difculty initiating the swallow controlled volumes. Speech pathologists and radiologists per-
Unexplained weight loss form these studies together. The goal of this study is not only
to determine the presence or absence of aspiration but also to
evaluate the effectiveness of compensatory swallowing strate-
upper esophagus, cannot be extinguished once it begins, gies (described below) that may decrease the risk of aspiration
and it continues in a predetermined progression until the and increase swallowing efciency. The test is not invasive,
sequence of events is completed. These inherent differences takes a short time to administer, and provides valuable infor-
highlight the need to examine the gag reex and the swallow mation that can be used in managing the dysphagia.2,38
separately. Only evaluation of the biomechanical events of the A barium swallow study examines esophageal function dur-
swallow, not the gag reex, can predict the safety of airway ing swallowing in contrast to the videouoroscopic swallowing
protection. study, which focuses on the oropharyngeal mechanism. The
barium swallow identies mucosal abnormalities, esophageal
Assessment of Airway Protection. Functional airway protec- strictures, esophageal motility, and gastroesophageal reux.
tion is a critical predictor of safe swallowing and, thus, an This test is conducted with the patient positioned upright and
important element of the clinical swallowing evaluation. supine position while swallowing liquid barium or in some
Effective airway protection entails timely and complete laryngeal cases a barium tablet. If necessary, gastric emptying can also be
assessed.16 Since the esophagus is under involuntary neural aspiration or obstruction but do not change the swallowing
control, compensatory swallowing strategies cannot be assessed physiology.2,38 A commonly used strategy is the chin tuck pos-
with this procedure. However, recommendations can be made ture. This posture has the advantage of increasing the pressure
for changing to liquid consistencies in a patient with an on the bolus and restricting the opening of the laryngeal inlet
esophageal stricture. during swallowing, thus potentially reducing the risk of laryn-
Endoscopic examination of oropharyngeal swallowing geal penetration and aspiration. However, in select cases a chin
can be performed at the bedside by a trained speech-language tuck may exacerbate the aspiration, underscoring the need for
pathologist. The oropharynx and larynx can be visualized radiographic evidence of its clinical value, if at all possible.
transnasally while the patient is swallowing food substances Head rotation to the weak side in a patient with head and neck
dyed with food coloring and the presence of laryngeal pene- cancer is another postural change that may assist bolus ow
tration, aspiration, and pharyngeal retention can be observed. down the intact side by obstructing the weak side and, hence,
As in the videouoroscopic swallowing study, compensatory preventing residue or aspiration. These strategies may be used
swallowing strategies such as postural modications or swal- in isolation or in combination depending on the nature of
lowing maneuvers can be evaluated for their efcacy.39 Endo- the underlying swallowing pathophysiology.
scopic evaluation of the esophagus and stomach while the Although it is not possible to detect the effectiveness of
patient is sedated can conrm the presence of strictures and these strategies with complete certainty at the bedside, they
mucosal anomalies.16 may have empiric benet that could be tested with an instru-
mental procedure, if that is deemed appropriate or necessary in
Assessment of Compensatory Swallowing Strategies the future. Table 103 lists some of the postural strategies that
may be introduced and their potential benets on bolus ow.
The physiologic information obtained from the clinical and
instrumental swallowing facilitates on-line assessment of Changes in Texture and Consistency of Food. Underlying
intervention strategies aimed at increasing swallowing safety physiological constraints, such as reduced tongue control or
and efciency. These include alterations in head and neck pos- strength, may affect the safety of swallowing certain solids or
ture, consistency of food, sensory awareness, and feeding liquids. The patient with advanced ALS or Parkinsons disease
behaviors. The chief advantage of these strategies is that they with profound tongue weakness may exhibit signs of aspira-
are simple for the patient to learn and to perform. In addition, tion on thin liquids but may have sufcient control to drink
once their effectiveness is determined, the patient can use the liquids thickened to a nectar-like or honey-like consistency in
intervention during meals to improve swallowing function. small sips. Patients debilitated by chronic disease and who lack
endurance to complete a meal may benet from ground or
Postural Modications. Postural changes during swallowing pureed moist foods that require limited mastication. In certain
often have the effect of diverting the food or liquid to prevent circumstances, altered food consistency is the only way a patient
Table 103
Compensatory Postural Changes that Improve Bolus Flow and Reduce Aspiration and
Residue During Swallowing
Postural Strategy Effects on Bolus Flow
Chin tuck Closes laryngeal vestibule, pushes tongue closer

to posterior pharyngeal wall, and promotes
epiglottic deection
Head back Promotes posterior bolus movement with assistance
of gravity
Head tilt to stronger side Directs bolus down stronger side with assistance
of gravity
Head turned to weaker side Diverts bolus away from weaker side by obstruction of
weaker pharyngeal channel, promotes opening of
upper esophagus
Head tilt plus chin tuck Directs bolus down stronger side while increasing
closure of laryngeal vestibule
Head rotation plus chin tuck Diverts bolus away from weaker side while facilitating
closure of laryngeal vestibule and vocal folds
Source: Logemann (1998), reference 2.

can continue to eat orally, for example, in the patient with the family. The family may feel that they have neglected their
esophageal carcinoma or a severe esophageal motility disor- obligation to nourish their loved one safely and may be over-
der. Some nutritional supplement drinks are both thicker liq- whelmed by the practical obligations demanded by the nono-
uids and calorically fortied, providing a safer alternative to ral route, for example, frequent nocturnal feedings, monitoring
more solid consistencies. of gastric residuals, etc. However, tube feeding may provide
Changes in the consistency of food and liquid are fre- the patient with several more months of improved quality of life
quently difcult for patients because they often lack appeal. afforded by strength and endurance. Patients and families may
Thus, this management strategy should be used as a last resort also feel a sense of reduced pressure to eat by mouth because of
and reserved for patients who are unable to follow directions the tube feeding.
to use postural changes or for whom other compensatory
strategies are not feasible.2 Pharmacological Management. There are no pharmacological
agents that directly act on swallowing function. However, there
Increased Sensory Awareness. Sensory enhancement tech- are agents for concurrent issues, which can exacerbate an
niques include increasing downward pressure of a spoon underlying mucosal problem.
against the tongue when presenting food in the mouth and pre- Candida esophagitis requires oral antifungal agents such as
senting a sour bolus, a cold bolus, a bolus requiring chewing, or nystatin topical every 4 hours for 2 to 3 weeks.40 Other anti-
a large-volume bolus. These techniques may elicit a quicker fungal medications include ketoconazole, miconazole, u-
pharyngeal swallow response while reducing the risk of aspira- conazole, and amphotericin B. Immunocompromised patients
tion. Some patients benet from receiving food or liquid at a with candidiasis require potent systemic antifungal medica-
slower rate, while others are more efcient with larger boluses. tions. Resistance can occur, however, in patients with long-
Enhancing the bolus characteristics to include more texture term prophylaxis. Patients who fail the above regimen may be
can sometimes induce mastication and bolus formation more considered for antiviral agents.41 The prokinetic agent or rani-
readily than a bolus that is both avorless and homogenous in tidine may be prescribed for poor esophageal motility, and
texture. This is particularly evident in patients with advanced proton pump inhibitors have been found to be effective in
dementia. Patient responses to these behaviors can be evaluated patients with gastroesophageal reux disease.42
at the bedside, and the ndings can be easily communicated to
the caregivers.2 Dietary Changes. Evaluation results highlight the most
appropriate nutritional method for the patient. If oral ali-
Secondary Behaviors. Attention is focused on the secondary mentation has been determined as safe, the guiding principle
behaviors that have an impact on the efciency of swallowing. for diet is to ingest the maximum amount of calories for the
For example, the patients attitude toward eating, endurance, least amount of effort. Examples of modied diets are listed
efciency of swallowing, and the length of time it takes to eat a in Table 104.
meal inuence the overall nutritional picture and, ultimately, Nutritionists can provide individualized suggestions for
quality of life. calorie-dense foods or high-calorie liquid supplements, depend-
ing on the patients metabolic status. Patients with oropha-
ryngeal dysphagia may require thickened liquids. Commercial
o] thickening agents from modied food starch can be used to
Management thicken liquids. These release the uid in the gastrointestinal
tract and provide water for hydration requirements.43
Effortless, efcient, and safe swallowing are important criteria
for continued oral nutrition. Experience has shown that Feeding the Patient. While there is no cure for a swallowing
most patients prefer oral alimentation even if it means they disorder in the terminally ill patient, continued ability to
do not receive sufcient nutrition. Patient autonomy in shared eat by mouth may be facilitated by careful hand-feeding
decision-making is a critical ethical principle to respect but techniques and strategies employed by family and caregivers.
should be accompanied by a clear understanding of the risks These techniques will vary depending on the underlying
involved in eating by mouth. Specically, families and patients swallowing/feeding difculty. Compliance with feeding strate-
should be informed about the risks and consequences of gies is often related to understanding of the rationale. Family
developing aspiration pneumonia and malnutrition. Health members are more likely to feed a patient a particular diet and
care professionals must present the information in as objective in a particular manner if they understand the physiological
a manner as possible, taking the patients wishes or the wishes and psychological reasons for the recommendation and if they
of the surrogate decision-maker into consideration. If the deci- have been included in the decision-making.2 Although hand
sion is to continue with oral intake, the safest diet should be feeding is time consuming, it allows for continued intimate
suggested and aspiration precautions introduced, using assess- contact between patient and caregiver. Interestingly, hand
ment of the swallowing problem as a guide. feeding has been shown in some cases to equal duration of
The decision to pursue the option of nonoral nutritional survival compared with patients who have gastrostomy tubes
support has signicant ramications for both the patient and placed.44
Table 104
Diet Modications for Patients with Dysphagia
Diet Denition Example Indication
Pureed diet Blenderized food with added liquid Applesauce, yogurt, moist mashed Reduced tongue function for
to form smooth consistency potatoes, puddings chewing, impaired
pharyngeal contraction,
esophageal stricture
Mechanically altered diet Ground, nely chopped foods that Pasta, soft scrambled eggs, cottage Some limited chewing
form a cohesive bolus with cheese, ground meats possible but protracted
minimal chewing due to impaired tongue
control
Soft diet Naturally soft foods requiring Soft meats, canned fruits, baked Reduced endurance for
some chewing; food is cut in sh; avoid raw vegetables, bread, prolonged meal due to
small pieces and tough meats tongue weakness for
chewing, reduced
attention span
Additional suggestions for feeding the patient include the Parkinsons disease may become more alert and
following: exible after their medications.18 Thus, timing of
meals to coincide with increased function may
1. Remove distractions at mealtime. This is appropri-
enhance swallowing efciency and safety. In con-
ate for patients who need to concentrate on swal-
trast, some medications, particularly benzodi-
lowing to increase safety, such as patients with head
azepines such as valium, may increase somnolence
and neck cancer who are using compensatory swal-
and produce bradykinesia, affecting the efciency of
lowing strategies, and for patients who easily lose
swallowing. In such cases, withholding oral intake
their focus and need to be fed, such as patients with
may reduce the risk of aspiration.
Alzheimers dementia.44
2. Emphasize heightened awareness of sensory clues,
Nonoral Nutrition. Some patients require primary nonoral
such as feeding patients larger boluses, increasing
feeding, and gastrostomy or jejunostomy tubes are placed
downward pressure of the spoon on the tongue to
endoscopically or in open surgical procedures. Some patients,
alert the patient that food is in the mouth, or feed-
such as those with esophageal cancer, head and neck cancer, or
ing patients cold or sour boluses or foods requiring
ALS, have had their feeding tubes in place for several months
some mastication. Some patients with Alzheimers
prior to the terminal period. For other patients, families and
disease demonstrate the most efcient swallow
caregivers may have recently decided to pursue the nonoral
when offered nger foods that require chewing.
feeding option. Irrespective of the scenario, the following
These foods allow them to tap into the automatic
should be considered:
motor rhythm of chewing and swallowing that is
reminiscent of the patterns they have used all 1. The presence of a feeding tube does not imply NPO,
their life. or nothing by mouth. Some patients are able to take
3. Provide feeding utensils. Patients with multiple scle- small amounts of food for their pleasure. Restric-
rosis who have feeding difculties associated with tions to reduce the risk of aspiration may apply dur-
hand tremors may be aided with devices such as ing these trials of oral intake, such as texture of
weighted cuffs that reduce the intention tremor. the food, postural requirements, and length of
These may also be useful in patients with Parkin- the trial.
sons disease. Occupational therapists are often able 2. Patients who are fed nonorally remain at risk for
to provide individualized assistive devices aspiration of either oral secretions or reuxed gas-
to patients. tric contents, including tube feeding and aspiration
4. Position the patient. Ensure optimal posture of the pneumonia. A long-term study by Langmore and
patient at meals, that is, reduce the tendency to associates45 examined the predictors of aspiration
slump forward, causing loss of food from the oral pneumonia in 189 elderly patients, including such
cavity, or head extension, making the airway vulner- factors as oropharyngeal and esophageal dysphagia,
able to aspiration. medical and dental status, feeding status, and func-
5. Schedule meal times. Some medications enhance tional status. They found that the dominant risk
swallowing function. For example, patients with factor for aspiration pneumonia was dependence
for feeding, that is, inability to feed oneself. This fully protective against aspiration.2,47 The seal in the trachea is
variable included those patients who were tube-fed not complete, and material sitting above the cuff can be aspi-
as well as those who were fed orally by a caretaker. rated. Tracheal suctioning should be performed after meals in
This study found that patients who were tube-fed patients with dysphagia who have chosen to eat. Ideally, the
had a signicantly increased risk of developing aspi- cuff should be deated and the patient encouraged to cough,
ration pneumonia. The authors posited that oral clearing material that may have been aspirated.
hygiene is frequently neglected in tube-fed patients,
promoting colonization of bacteria, and aspiration
of these secretions can result in pneumonia. o]o]o]
3. Inserting a form of nonoral nutrition in a patient DRY MOUTH (XEROSTOMIA)
with a terminal illness is controversial and is the
subject of numerous recent publications, particu-
9=
larly in relation to institutionalized adults with
case study
advanced cognitive impairment due to dementia.
Mrs. M, a Patient with Abdominal Pain
Continued careful hand feeding over articial nutri-
tion is the overwhelming recommendation by the Mrs. M was an 80-year-old woman with a history of demen-
geriatricians who have conducted studies compar- tia, end-stage cardiac disease, and peripheral vascular disease.
ing multiple outcome parameters including sur- One weekend she developed abdominal pain and was admit-
vival, cost, and quality-of-life ratings.46 ted to the hospital. Work-up revealed a blockage with proba-
ble toxic colon. She was made NPO and placed on multiple
Gastroesophageal Reux Precautions. Poor esophageal motil- antibiotics to prevent further infection. She became more
ity or reduced tone of the lower esophageal sphincter can be agitated and was given round-the-clock haloperidol. She was
managed either pharmacologically with the pro-motility agents started on an IV morphine drip. However, she complained of
described above or nonpharmacologically. Ideally, a combina- constant thirst. The nurses provided her with frequent mouth
tion approach is most efcacious. Gastroesophageal reux swabs. They also painted articial saliva in her mouth and
precautions include elevation of the head of the bed to 45 applied lip balm to her lips. They brushed her teeth several
degrees at night, inexpensively and effectively accomplished by times a day to stimulate saliva.
placing blocks under the head of the bed; frequent small o]
meals; upright posture for 45 to 60 minutes after eating; mon-
itoring of gastric residuals in tube-fed patients, and avoidance
of spicy foods, coffee, tea, chocolate, and alcohol.47 o]
Denition
Administration of Medication. Oral medications can present
enormous challenges to patients with dysphagia. Patients who Xerostomia is the sensation of oral dryness, which may or
take pills with uid complain that they can swallow the water may not be accompanied by decreased salivary secretions.
but the pills get caught in the throat. This phenomenon is Although patients receiving palliative care commonly experi-
explained by the differences in speed of transit of the uid and ence oral dryness,48,49 it may be difcult to identify the exact
the pill: the water travels more rapidly than the pill. Patients underlying cause and contributing factors. Decreased sali-
with delayed pharyngeal swallow initiation, reduced tongue vary function and prolonged xerostomia cause myriad oral/
strength, and/or pharyngeal contractions are unable to coor- esophageal problems in the mouth, including dental caries,
dinate propulsion of the entire bolus. Crushing medications gum, tongue, and oral mucosal irritations and lesions, mouth
or burying them whole in a semisolid such as applesauce or ice infections, taste changes, bad breath, swallowing problems,
cream creates a similar consistency and makes swallowing eas- and speech problems. Thus, treatment offers much comfort
ier. Alternately patients can be offered their medications in to patients by moisturizing dry lips and mouth, but also
elixir form. A recent development is a new technology that by eliminating these long-term sequelae. Ultimately, sleep,
packages the widely used compounds used in medications rest, and nutrition are secondary issues arising out of these
into tablets that disintegrate and dissolve on the tongue (Rap- problems.50,51
iTab Technology, Schwarz-Pharma, Milwaukee WI). This type
of medication delivery would be most helpful for the dys-
phagic patient having difculty swallowing tablets. o]
Incidence
Tracheostomy Tubes and Oral Intake. The presence of a tra-
cheotomy tube does not preclude oral intake. In fact, access to Due to lack of studies outside of the cancer population, it is
the upper respiratory tract improves pulmonary toilet in difcult to estimate the incidence of xerostomia. In a preva-
patients who have chosen to eat in spite of aspiration. Con- lence study of palliative care admissions, 55% experienced
trary to common thinking, an inated tracheotomy cuff is not xerostomia.52 Other authors estimate that xerostomia affects
30% of palliative care patients.53 In the population at large, it of saliva a day. The parotid glands, the submandibular glands,
increases with age and medical problems because medica- and the sublingual glands produce 90% of saliva, with the rest
tion therapy increases incidence. In palliative care, it is listed as produced in the oral pharynx. Parotid glands, located below
a major source of discomfort in patients with cancer. In non- and in front of each ear, produce a serous and watery saliva.57
cancer, patients, there has not been much research except for Therefore, damage to the parotid gland will produce a thicker
Sjgrens disease. saliva. Submandibular glands, located in the lower jaw, secrete
mostly serous saliva with some mucinous elements.57 Sublin-
gual glands produce purely mucous saliva.55,58 The overall vis-
o] cosity of saliva is dependent on the functioning of the various
Pathophysiology glands.
There are numerous causes of xerostomia. Medications
Xerostomia results from four causes. First, it may result from are notorious culprits of dry mouth, particularly several
reduced salivary secretion. Common causes include surgery categories commonly used in palliative care.50,58 These medi-
performed on head and neck areas, radiation aimed at head and cations include sedatives, tranquilizers, antihistamines, anti-
neck regions, medication side effects, infections, hypothy- Parkinsonian medications, antiseizure medications, skeletal
roidism, autoimmune processes, and sarcoidosis. Second, xeros- muscle relaxants, cytoxic agents, tricyclic antidepressants, and
tomia may be caused by buccal erosion. Potential factors are anticholinergics. Oral dryness may result from oral diseases
cancer and cancer treatment, particularly chemotherapy and such as acute and chronic parotitis, or partial or complete sali-
radiation. Additionally, immunocompromised conditions such vary obstruction. Other diseases such as Sjgrens syndrome,
as AIDS, arthritis, or lupus may exacerbate dry mouth. Third, diabetes mellitus, HIV/AIDS, scleredema, sarcoidosis, lupus,
local or systemic dehydration may induce xerostomia. Factors Alzheimers disease, and graft versus host disease can cause dry
contributing to dehydration include anorexia, vomiting, diar- mouth.50,58 Radiation to the head and neck can produce a 50%
rhea, fever, drying oxygen therapies, mouth breathing, polyuria, to 60% reduction of saliva within the 1st week of treatment
diabetes, hemorrhage, and swallowing difculties. Fourth, other because of inammation.58 Chemotherapy may also cause dry
miscellaneous disorders such as mental health issues including mouth, particularly in advanced disease.58 Usually, dry mouth
depression, coping reactions, anxiety, and pain can cause xeros- sensations are worse at night. Salivary secretions may be fur-
tomia.4850,54 There has been a long-standing assumption that as ther reduced due to the duration of radiation and/or greater
one ages, dry mouth naturally occurs as part of the process. In radiation doses.58,59 However, it eventually may become a more
fact, age is not a factor;50,51 rather, as one ages, the chance of dry persistent issue the longer radiation continues or as disease
mouth increases due to increasing comorbid conditions that progresses.54
occur in the older adult, along with the higher probability of the
necessity to take more medications.50
Although saliva is necessary for oral nutrition, it also o]
facilitates chewing, swallowing, tasting, and talking. For these Assessment
functions, its properties allow lubrication, repair, food-bolus
formation, and food breakdown. Additionally, saliva breaks Xerostomia may be accompanied by discomfort of the oral
down bacterial substances, offering immunoprotection for mucosa and the tongue, such as burning, smarting, and sore-
oral mucosa and dental structures.50,51 In this way, it has anti- ness with or without the presence of ulcers. Additionally, there
microbial properties, buffering properties, and liquid proper- may be difculty with mastication, swallowing, and speech.
ties to help with gustation. Saliva thereby inhibits dental caries Taste alterations, difculty with dentures, and an increase in
and infections, while providing protection against extreme dental caries may also be associated with xerostomia. Addi-
temperatures of food and drink.50,51,5557 tionally, sleep may be altered because of dry mouth. Therefore,
The function of saliva production is regulated by the ner- a thorough history should review these problem areas along
vous system. After experiencing smell, sight, or taste of food, with the subjective distress of xerostomia (Table 105). Review-
the salivary glands are stimulated to produce saliva within 2 to ing onset of oral dryness correlation with medication initia-
3 seconds.57 There is a two-step process to saliva secretion; pro- tion may be insightful in assessment.58
duction at the acinar level of the cells, and secretion where An oral exam will reveal clear indications of dry mucosa.
saliva is actually secreted into the mouth via the ducts.50 Saliva Extraoral examination is noted for dry, cracked lips, often with
is comprised of several elements. Ninety-nine percent of saliva angular cheilitis or candida at the corners of the mouth.50
is uid composed of water and mucus, providing a lubricative Intraoral examination includes inspection of both mucosal
element. The remaining 1% of saliva is solid, containing salts, and buccal dryness, noting whether the mouth is pale and dry,
proteins, minerals such as calcium bicarbonate ions, and the presence of a dry and ssured tongue, the absence of sali-
enzymes such as pytalin, antibodies, and other antimicrobial vary pooling, and the presence of oral ulcerations, gingivitis,
agents.4851,55 or candidiasis.49,55 Finally, salivary glands should be noted for
Saliva is produced by numerous glands in the orophar- swelling, indicating obstruction, and dentition should be
ynx,50,55 where the average healthy adult produces up to 1.5 liters examined for caries.50
into a test container at a set time.49,55 However, for most palliative

Table 105 care patients, this may be a burdensome and unnecessary test.
Assessment Questions for Xerostomia
To document the extent of xerostomia, it may be helpful to
Does oral dryness bother you? use rating scales specically designed for this purpose. Two
Is your sleeping interrupted by a dry mouth? scales, contained in Table 106, rates xerostomia in a four-
point system.60,61
Do you need to take increase uids?
Is your mouth sore?
Do you experience altered taste sensations? o]
Is it difcult to speak? Management
Do you use tobacco? If so, what type and how much?
Do you drink alcohol or caffeine? If so, how much? Much of xerostomia management focuses on interventions to
alleviate rather than interventions to eradicate or to prevent the
Are you taking any medications, including over-the-counter
preparations, prescriptions, or herbs? symptom. This is because there is little to offer patients to ward
off oral dryness. Therefore, the goal becomes protecting
Sources: Sreebny and Valdini (1987), reference 49; Cooke et al. (1996), patients from further complications, which may be more prob-
reference 55; Ship (2002), reference 50; Jensen et al., (2003), reference 51. lematic.62 Medical treatment of xerostomia, as summarized in
Table 107, would involve the following stepwise approach:
Two quick bedside tests are the cracker biscuit test and 1. Treat underlying infection or disease. Candidiasis
the tongue blade test. The cracker biscuit test involves giving a can cause xerostomia. Treating it with nystatin
patient a dry cracker or biscuit. If the patient cannot eat swish-and-swallow or with uconazole 150 mg PO
the cracker without extra uids, xerostomia is present.49 The can improve xerostomia.48,50,54,55
tongue blade test is an extension of mouth inspection. After 2. Review and alter current medications as appropriate.
inspection is complete, the tongue blade is placed on the There are some 500 medications that may cause oral
tongue. Since dry mouth makes a ropey, pasty saliva, the tongue dryness as a side effect.50,58 Specically, anticholiner-
blade will stick to the tongue of a patient with xerostomia.55 gics, antihistamines, phenothiazines, antidepressants,
Another, more aggressive test is unstimulated or stimulated opioids, -blockers, diuretics, anticonvulsants, seda-
sialometric measurement of saliva. This test measures the tives, and tobacco all may cause oral dryness. Thus,
amount of saliva collected by spitting into a container, swab- patients with heart conditions, mental health issues,
bing the mouth with a cotton-tipped applicator, or salivating depression, anxiety, neurological disorders, and pain
disorders may be at risk for dry mouth. It is impor-
tant to rst evaluate the necessity of specic
Table 106 xerostomia-inducing drugs. If eliminating possible
Dry Mouth Rating Scales culprits is not possible, other possible strategies
Oncology Nursing Society Documentation include decreasing the dosage to decrease dryness, or
for Xerostomia altering the schedule to assure that the peak effect of
medication does not coincide with nighttime peak of
0 No dry mouth
decreased salivary production.4850,55
1 Mild dryness, slightly thickened saliva; little change
3. Stimulate salivary ow. Salivary stimulation can
in taste
occur with both nonpharmacological and pharma-
2 Moderate dryness, thick and sticky saliva, markedly cological interventions.
altered taste
4. Replace lost secretions with saliva substitutes.
3 Complete dryness of mouth
4 Salivary necrosis
Salivary Gland Changes: Table 107

National Cancer Institute Documentation of Dry Mouth Stepwise Process for Managing Xerostomia
0 None Treat underlying infections.
1 Slightly thickened Review and alter current medications.
2 Thick, ropey, sticky saliva Stimulate salivary ow.
3 Acute salivary necrosis Replace lost secretions with saliva substitutes.
4 Disabling Protect teeth.
Rehydrate.
Sources: National Cancer Institute (2003), reference 61; Oncology
Nursing Society (2002), reference 60. Modify diet.
Nonpharmacological Interventions occurs as a single treatment with eight needles placed

in three places: bilaterally in the ears and a single dis-
Nonpharmacological use of gustatory stimulation includes sim- tal point in the radial aspect of the index nger.57 One
ple measures. Table 108 summarizes possible procedures. All of study showed that 6 weeks of twice-weekly treatment
these interventions, except acupuncture, are inexpensive and increased salivation for up to 1 year.63 Another study
may be as efcacious as medications for some patients, without used a 3-to-4 weekly regimen, with monthly mainte-
uncomfortable side effects. However, relief is not long lasting.55 nance visits to relieve xerostomia.64
Peppermint water. Peppermint stimulates saliva and
can be taken as needed. However, it should not be Pharmacological Interventions
used with metoclopramide as they have opposing
actions.4850 Pilocarpine. Pilocarpine is a parasympathetic agent
Vitamin C. Use in lozenges or other forms as pre- that increases exocrine gland secretion and stimu-
ferred. Disrupts salivary mucins to reduce viscosity lates residual functioning tissue in damaged salivary
of saliva.56 Although inexpensive, vitamin C may be gland. Saliva production is greatest after a dose and
irritating to the mouth, particularly if the patient response lasts for about 4 hours.56 Dose is 5 mg PO
has mouth sores.54 Also, there is a need to be careful tid or QI, not to exceed 1 0 mg per dose.57 Response
as continual vitamin C can erode dental enamel.56 varies with severity of xerostomia. Side effects
Citric acids. Present in malic acid or in sweets. Citric include mild to moderate sweating, visual distur-
acids can act similar to vitamin C in causing a burn- bances, nausea, rhinitis, chills, ushing, dizziness,
ing sensation.54 abdominal cramping, and asthenia,54,55 but can be
Chewing gum, mints. Preferably sugarless, to pre- lessened if taken with milk.56 Pilocarpine should not
vent caries and infections, as an immunocompro- be used in patients with chronic obstructive
mised state can hasten cavities and infections. These pulmonary disease or bowel obstruction.54,55,57
are most preferred by patients, are cheap, and have New studies have shown that pilocarpine given
no side effects. May create a buffer system to com- before and during radiotherapy can reduce
pensate for dietary acids.54,56 xerostomia.54,65,66
Acupuncture. Effective with a variety of types of Bethanechol. Bethanechol relieves anticholinergic
xerostomia, although mechanism not understood. It side effects of tricyclic antidepressants. Few studies
Table 108
Review of Interventions of Xerostomia
Intervention Role/Effect Benet Side Effect
Nonpharmacological
Peppermint Water Mucous saliva Inexpensive Interacts with metoclopromide
Vitamin C Chemical reduction Inexpensive Can irritate mouth if sores present
Reduces viscosity
Citric acid/Sweets Mucous saliva Inexpensive Can irritate like vitamin C. In sweets,
can cause caries.
Chewing gum, mints Watery saliva Inexpensive No side effects if sugarless,
More volume otherwise can promote caries
Only dentate
Acupuncture Increase production Noninvasive Expensive
Pharmacological
Pilocarpine Nonselective muscarinic Increases saliva production Sweating, nausea, ushing, cramping
Bethanechol M-3 muscarinic Relieves side effect of TCA
Methacholine Parasympathetics Increases salivation Hypotension
Yohimbine Blocks -2 adrenoreceptors Increases saliva Drowsiness, confusion,
atrial brillation
Cevimeline M-1 & M-3 muscarinic agonist Increases saliva Less effects than pilocarpine
Sources: Adapted from Amerongen (2003), reference 56; Ship (2002), reference 50.
have been done that focus specically on xerostomia ade. Fresh fruits, papaya juice, or pineapple juice
rather than the side effects of antidepressants.54,55 may help some patients refresh their mouths,54,66
Methacholine. Methacholine is a parasympath- however, citrus products may be too acidic and irri-
omimetic compound that increases salivation. Dose tating for other patients.56
is 1 0 mg a day. One side effect is hypotension. It is
short-acting.54,55
Yohimbine. Yohimbine blocks 2-adrenoreceptors. o]
Side effects include drowsiness, confusion, and atrial Nursing Interventions
brillation, lasting up to 3 hours. Dose is 14 mg
a day.54,66 Because the degree of xerostomia varies, nursing intervention
Cevimeline. Cevimeline is a muscarinic agonist that will vary from one patient to the next. Little research has
acts to increase saliva by inhibiting acetyl- focused on dry mouth, and clear evidence of the efcacy of one
cholinesterase. It works on salivary glands and treatment over another has not been demonstrated. The result
lacrimal glands. Used in a spray or mouthwash, it is a lack of standardized oral care procedures, with protocol
lasts up to 6 hours.56,57 varying from one institution to the next.57 Therefore, the nurse
Water. Water is simple and inexpensive. It is usually must assess how much distress xerostomia is causing and help
well tolerated and easily accessible. There is no patients nd a suitable therapy within their nancial means.
research on whether optimal relief results from Both the nancial and physical burden of therapy may be
either warm or cold. Thus, temperature is a personal of concern for patients. Many patients choose nonpharmaco-
choice.54,55 logical therapy because it is inexpensive and has fewer side
Articial saliva. Articial saliva contains car- effects.54 Other patients may consider nonpharmacological
boxymethylcellulose or mucin; dose 2 mL every 3 to interventions depending on how many other symptoms they
4 hours.54,55 Some examples include Glandosane, are experiencing or how many other medications they are cur-
Xero-Lube, Orex, and Saliment.51,56 rently taking. If a pharmacological therapy is chosen, it is
Protect teeth. Oral hygiene, such as frequent brush- important to consider previous patient choice, as patients
ing with soft brushes, water jet, denture cleaning, seem to prefer saliva stimulants to saliva substitutes.54 If saliva
uoride rinses, mouthwash, and ossing, stimulate substitutes are used, those with a mucin base appear to be bet-
salivation. This can help prevent candidiasis, partic- ter tolerated than those derived from carboxymethylcellulose.68
ularly since dentures can harbor infections.50 However, both types of preparation bases are better tolerated
Use of lip balm prevents cracked lips, and use of as an oral spray than as a gel or rinse.68 The issue of prophylac-
saliva moistens lips. Care should be taken not to use tic antifungal therapy occasionally arises. The evidence thus
products with alcohol since these can be irritat- far has not shown it to be benecial.
ing.54,57,60,61 Patient and family education focuses on the goal of treat-
Dentifrices. Several are manufactured for patients ment as palliative. The nurse may help a family systematically
with dry mouth that contain antimicrobial go through a variety of therapies to achieve relief. Helping
enzymes to reduce oral infections and enhance patient and families to demonstrate good oral care maintains
mouth wetting. Examples are Biotene and Oral the comfort of the patient. As a patient weakens, provision of
Balance.50,56,57 mouth care gives a family member a tangible role in care.
Mouthwashes. Help rinse debris from mouth.
Includes homemade mouthwashes made from saline,
sodium bicarbonate, glycerin, and perhaps lemon.50,56 o]o]o]
Rehydrate. Replenish oral hydration by sipping HICCUPS
water, spraying water, and increasing humidity in
the air.67 To assist in sleep, instituting these measures
9=
at night may help rest.
case study
Modify diet. Education regarding the avoidance of
MB, a Patient with Gastric Cancer
sugars, spicy foods, sometimes salt, and dry or
piquant foods is important. Patients may sip such MB is a 70-year-old male with rapidly progressing gastric
foods in milk, tea, or water to assist in swallowing. cancer. He was diagnosed 7 months earlier and underwent
In addition, instruct patients to take uids with all chemotherapy. He is fairly weak and has begun to get more
meals and snacks. The use of gravies and juices with pain and discomfort. His wife cares for him at home in a
foods can add moisture to swallowing. Again, pre- small guest room because he is bedridden and has no energy
ferred tastes may vary from one patient to the next to climb the stairs. His family asks the nurse to evaluate him.
regarding salt, sweet, and sour. For dry mouth with- Upon arrival, the nurse nds him moderately uncomfortable
out oral ulcerations, provide carbonated drinks such with pain. He is disheveled, lying at on a twin bed facing
as ginger ale, as well as cider, apple juice, or lemon- against the wall. He complains of pain in his abdomen and
constant hiccups. He has not eaten in several days due to his can cause much distress, depending on the patients diagno-
discomfort. He is washed and bathed. Morphine elixir is initi- sis.73
ated for his pain. For the hiccups, the family is encouraged to Intractable hiccups in the third category have more than
use a bolster pillow or several pillows to decrease the pressure 100 different causes, varying from simple metabolic distur-
of his large abdomen on his diaphragm and lungs. Addition- bances to complex structural lesions of the central nervous
ally, baclofen 15 mg tid is initiated. Over the next 2 days, he is system or infections.67,69,71,73 Particular causes can be distilled
much more comfortable. After several days, his hiccups con- into four conditions: structural, metabolic, inammatory, and
tinue. The baleen is increased without effect. Because he is infectious disorders.69 Specically, structural conditions affect
declining and also feeling nauseous, haloperidol 1 mg q 4 to or irritate the peripheral branches of the phrenic and vagus
6 hours is initiated, which resolves the hiccups. nerves, such as in abdominal or mediastinal tumors, hepa-
o] tomegaly, ascites, or gastric distention, and central nervous
disorders in which persistent hiccups can signal serious under-
lying disorders, such as thoracic aneurysm, brainstem tumors,
o] metabolic and drug-related disorders, infectious diseases, and
Denition psychogenic disorders.73,74,78 Common causes in terminal ill-
ness include neurological disorders such stroke, brain tumors,
Hiccup, or singultus, is dened as sudden, involuntary con- and sepsis and metabolic imbalance; phrenic nerve irritation
tractions of one or both sides of the diaphragm and intercostal such as tumor compression or metastases, pericarditis,
muscles, terminated by an abrupt closure of the glottis, pro- pneumonia, or pleuritis; and vagal nerve irritation such as
ducing a characteristic sound of hic.6974 Hiccup frequency is esophagitis, gastric distention, gastritis, pancreatitis, hepatitis,
usually 4 to 60 per minute.75 Prolonged hiccups can produce and myocardial infarction.71,72 Medications such as steroids,
fatigue and exhaustion if sleep is interrupted. Additionally, chemotherapy, dopamine antagonists, megestrol, methyldopa,
anxiety, depression, and frustration may arise if the impor- nicotine, opioids, and muscle relaxants may also cause hic-
tant daily activities of eating or sleeping are interrupted. The cups.76
long-term effects are exhaustion, increasing distress from The precise pathophysiology of hiccups is unknown, as is
lack of rest, and wasting because of interference with eating. their physiological function. It is considered a primitive func-
Therefore, although seemingly a mere disturbance with no tion, such as yawning or vomiting, that through evolution now
long-term pathology, intractable hiccups affect the quality of serves no purpose.69,72,79 The anatomical cause of hiccups is
life.69,71,72,75 thought to be bimodal, with association either with the phrenic
or vagus nerve,75,78 or central nervous involvement, which
causes misring.72 There is thought to be a hiccup reex arc
o] located in the phrenic nerves, the vagal nerves, and T6T12
Prevelence and Impact sympathetic bers, as well as a possible hiccup center in either
the respiratory center, the brain stem, or the cervical cord
Hiccups in palliative care have not been well studied. Esti- between C3 and C5.80 However, there is not a discrete hiccup
mates of prevalence of hiccups in cancer patients is about 10% center, such as the chemoreceptor trigger zone for nausea.75,79,77
to 20%.76 Because of their perceived insignicance, the inci- Evidence suggests an inverse relationship between partial
dence and prevalence are not well known. Additionally, most pressure of carbon dioxide (pCO2) and hiccups; that is, an
discussion of the impact of hiccups occurs in case reports. increased pCO2 decreases the frequency of hiccups and a
Children are more at risk than adults.76 decreased pCO2 increases frequency of hiccups.67 Interestingly,
hiccup strength or amplitude varies from patient to patient as
well as among separate episodes in an individual.73 Moreover,
o] hiccups have a minimal effect on respiration.
Pathophysiology
There are three categories of hiccups. First are benign, self- o]

limiting hiccups, which occur frequently. Such a bout of hic- Assessment
cups can last from several minutes to 2 days. Benign hiccups
are primarily associated with gastric distention.66,77 However, Extensive work-up for hiccups in palliative care may be imprac-
sudden changes in temperature, alcohol ingestion, excess tical and more uncomfortable than the hiccups themselves,
smoking, and psychogenic causes may also induce benign hic- while revealing little. Indeed, a recent retrospective study
cups.69,7173 Second are persistent, or chronic, hiccups. These revealed that laboratory studies neither assisted in treatment
continue for more than 48 hours but less than 1 month. Third nor helped determine what treatment would be effective.81
and last are intractable hiccups, which persist longer than Nonetheless, assessment should include a subjective review of
1 month.67,69,7173 However, for patients in palliative care, these how much distress the hiccups cause the patient. For example,
times may not be the important issue; rather, the amplitude in a patient with an abdominal tumor, hiccups can cause
excruciating pain, whereas in the obtunded patient in renal

failure, hiccups may cause no distress at all. Table 109
Nonpharmacological Interventions for Hiccups
History may give insight into to the distress of hiccups.
Subjective assessment includes the history and duration of the Respiratory Measures
current episode of hiccups, previous episodes, and interfer- Breath holding
ence with rest, eating, or daily routines. Inquiry into possible
Rebreathing in a paper bag
triggers of hiccups episodes may be helpful, including patterns
Diaphragm compression
in timing during the day or other activities proceeding the hic-
cups such as eating, drinking, positioning, or various proce- Ice application in mouth
dures. In addition, a review of recent trauma, surgery, or acute Induction of sneeze or cough with spices or inhalants
illness and medication history is important to help focus on
Nasal and Pharyngeal Stimulation
potential causes of the hiccups.69,79
Usually the presence of hiccups themselves is quite obvi- Nose pressure
ous. However, physical exam may not reveal the cause of the Stimulant inhalation
hiccups, but, rather, rules out other conditions. Oral exami- Tongue traction
nation may reveal signs of swelling or obstruction. Observa- Drinking from far side of glass
tion includes inspection of the patients general appearance, Swallowing sugar
observing for signs of a toxic or septic process. More speci-
Eating soft bread
cally, it includes evaluating for tenderness of the temporal
artery, foreign bodies in the ear, infection of the throat, goiter Soft touch to palate with cotton-tipped applicator
in the neck, pneumonia or pericarditis of the chest, abdominal Lemon wedge with bitters
distention or ascites, and signs of stroke or delirium.69
Miscellaneous Vagal Stimulation
Specic testing may be warranted to eliminate other causes.
Ocular compression
Chest x-ray may rule out pulmonary or mediastinal processes
as well as phrenic/vagal irritation from peritumor edema in Digital rectal massage
the abdominal area.76 In addition, blood work including a Carotid massage
complete blood count with differential electrolytes may rule
Psychiatric Treatments
out infection as well as electrolyte imbalances and renal
failure.67,69,72,73 Behavioral techniques
Distraction
Gastric Distention Relief

o]
Fasting
Management
Nasogastric tube to relieve abdominal distention
The lack of research to increase understanding on the nature Lavage
of hiccups has resulted in anecdotal therapy and a lack of Induction of vomiting
treatment consensus. The consequence is treatment bias based
on previous success rather than a systematic, evidence-based Phrenic Nerve Disruption
approach. Similar to treatment of dysphagia or xerostomia, Anesthetic block
treatment for hiccups should be focused on the underlying
Miscellaneous Treatments
disease. If the etiology questionably includes simple causes
Bilateral radial artery compression
such as gastric distention or temperature changes, empiric
treatment should be initiated. Both nonpharmacological and Peppermint water to relax lower esophagus
pharmacological interventions may be used.69,7173 Therapies Acupuncture
include physical maneuvers, medications, and various other
Sources: Lewis (1985), reference 69; Launois (1993), reference 79;
procedures to interfere with the hiccup arc.80 Otherwise, treat-
Rousseau (2003), reference 73; Williams (2001), reference 72; Smith (2003),
ment for more complex episodes of hiccups without clear eti- reference 71; and Kolodzik & Eilers (1991), reference 75.
ology will focus on various pharmacological interventions.
Nonpharmacological Treatment nasal and pharyngeal stimulation. These techniques use pres-
sure on the nose, inhalation of a stimulant, traction of the
Nonpharmacological treatments can be divided into seven tongue, drinking from the far side of a glass, swallowing sugar,
categories and are outlined in Table 109. First are simple res- eating a lemon wedge with bitters, eating soft bread, or soft
piratory maneuvers. These include breath holding, rebreath- touch to the palate with a cotton-tipped applicator.72,73,75 Third
ing in a bag, compression of the diaphragm, ice application in is miscellaneous vagal stimulation, which includes ocular
the mouth, and induction of sneeze or cough.69,7173 Second is compression, digital rectal massage, and carotid massage.
Fourth are psychiatric treatments, which focus on behavioral Pharmacological Treatment

therapy. Fifth is gastric distention relief, which encompasses
fasting, use of a nasogastric tube to decrease distention, lavage, Initial therapy should attempt to decrease gastric distention,
and induction of vomiting.69,72 Sixth is phrenic nerve disrup- which is usually the problem in 95% of cases, hasten gastric
tion, such as an anesthetic injection or acupuncture.69,80 Sev- emptying, and relax the diaphragm. This includes the use
enth are miscellaneous benign remedies, such as bilateral of simethicone and metoclopramide.69,70,72,73 If ineffective,
compression of radial arteries, peppermint water to relax the second-line therapy should focus on suppression of the hiccup
lower esophagus, use of distraction, or acupuncture.67,69,7173 reex. Common pharmacological interventions, listed in Table
1010, include the use of various classes of medications: muscle
relaxants such as baclofen, midazolam, and chlordiazepoxide;
anticonvulsants such as gabapentin, carbamazepine, and val-
proate82,83; corticosteroids such as dexamethasone and pred-
Table 1010
nisone; dopamine antagonists such as haloperidol, droperidol,
Pharmacological Treatment Suggestions for Hiccups
and chlorpromazine; calcium channel blockers/antiarrhyth-
Agents to Decrease Gastric Distention mics such as nifedipine, nimodipine, nefopam, phenytoin,
Simethicone 1530, mL PO q4h lidocaine, quinidine78,84; SSRI antidepressants, specically ser-
Metoclopramide 1020 mg PO/IV q46h (do not use with traline; and various other medications such as ketamine, THC,
peppermint water) and methylphenidate.76,8587 Third-line therapy is the use of
other drugs to disrupt diaphragmatic irritation or other possi-
Muscle Relaxants ble causes of hiccups, which may include anesthesia and
Baclofen 510 mg PO q6-12 h up to 1525 mg/d phrenic and cervical blocks.78,88,89
Midazalom 510 mg
Anticonvulsants
Gabapentin 300600 mg PO tid, o]
Carbamazepine 200 mg PO, QDTID, titrate up Nursing Interventions
as needed
Valproic acid 515 mg/kg/d PO, then increase by Although hiccups appear to be a simple reex, their specic
250 mg/wk until hiccups stop mechanism of action is unclear due to myriad etiologies. Nurses
are helpful in providing patients and families with a review of
Corticosteroids the nature of hiccups and their role as an annoyance rather
Dexamethazone 40 mg PO QD than a pathological symptom. Thus, nursing interventions
should focus on information sharing and comfort, with a goal
Dopamine Agonists
of terminating the hiccups. The extent of aggressive treatment
Haloperidol 15 mg PO/SQ every 12h will depend on the degree of distress the hiccups cause on the
Chlorpromazine 550 mg PO/IM/IV q68h patients quality of life. In particular, what effect do the hic-
cups have on the daily routine, most particularly on sleep and
Calcium Channel Blockers/Antiarrythmics
on nutrition? Many patients have felt frustrated that little cre-
Phenytoin 200 mg IV, 300 mg PO QD dence was given to their discomfort and disruption caused for
Nefopam 10 mg IV QD-QID intractable hiccups. Thus, the nursing role is one of advocate
Lidocaine bolus 1 mg/kg/h IV, then 2 mg/min until to promote initiation of some sort of therapy, empathetic lis-
hiccups terminated tener, and educator. Nurses can provide patients with infor-
Quinidine 200 mg PO mation on some nonpharmacological maneuvers such as
Nifedipine 1080 mg PO q d respiratory maneuvers, nasal and pharyngeal stimulation, dis-
traction, and peppermint waters. If unsuccessful, the nurse
Other Medications should provide education on the various classes of medications
Mephenesin 1000 mg PO q d as prescribed as options. An example includes antacids to
Amitriptyline 2590 mg PO q d decrease gas, antiemetics to affect dopamine levels, and muscle
Methyphenidate 520 mg IV, 520 mg QD relaxants to affect both gamma-aminobutyric acid channels
and skeletal muscle.71,73,76 Offering support to the patient is
Sertaline 50 mg PO QD
necessary since patients respond to different medications. If
Sources: Lierz & Felleiter (2002), reference 88; Rousseau (2003), reference one class or type of medication fails, the nurse should suggest
73; Marachal et al. (2003), reference 87; Regnaud (2004), reference 76; that another class of medication be tried, until all possible
Petroinau et al. (2000), reference 83; Bilotta & Rosa (2000), reference 84; medications have been used. If all of these medications fail
Viadya (2000), reference 85; Cersosimo & Brophy (1998), reference 86; and
Williams (2001), reference 72. to induce hiccup reduction or cessation, the nurse should sug-
gest a referral to a palliative care service, a pain service, or an
anesthesia service to further explore treatment therapies.

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11o] Denice Caraccia Economou
Bowel Management: Constipation, Diarrhea,

Obstruction, and Ascites
I feel like I am going to pop! This constipation is worse than the pain.B. H., 58-year-old with
pancreatic cancer
Key Points o]o]o]

Multiple factors contribute to constipation. Proactive management CONSTIPATION
is essential for successful outcomes.
Treating diarrhea requires a thorough assessment and therapy Constipation affects 2% to 10% of the general population, but
directed at the specic cause. the incidence may be as high as 20% to 50% in older or ill per-
Palliative care should allow for a thoughtful and realistic approach sons.13 Constipation is a major problem in cancer patients,
to management of symptoms within the goals of care. with as many as 70% to 100% of cancer patients having this
distressing symptom.2,4 The use of opioids for pain is a contrib-
utory factor to constipation, and this side effect is the principal
reason for their discontinuation.13,5 Constipation is common
and yet undertreated by both physicians and nurses.2
Denitions
Constipation is subjective to many patients, making assess-

ment much more difcult. Constipation is dened as a decrease
in the frequency of passage of formed stools and characterized
by stools that are hard and small and difcult to expel. Under-
standing the normal functioning of the bowel can provide
insight into the contributing factors leading to constipation,
diarrhea, and obstruction. Associated symptoms of constipa-
tion vary but may include excessive straining, a feeling of full-
ness or pressure in the rectum, the sensation of incomplete
emptying, abdominal distention, and cramps.7 The subjective
experience of constipation may vary for different individuals,
underscoring the importance of individualized patient assess-
ment and management.
Prevalence among cancer patients is common.1,2 The impact

of constipation on quality of life is substantial. Constipation
causes social, psychological, and physical distress for patients,
which additionally impacts the caregiver and health care staff.
Failure to anticipate and manage constipation in a proactive
way signicantly affects the difculty a patient will experience
in attempting to relieve this problem.
219
Pathophysiology 2. Adequate dietary ber. The presence of food in

the stomach initiates the muscle contractions and
Normal bowel function includes three areas of control: small secretions from the biliary, gastric, and pancreatic
intestinal motility, colon motility, and defecation. Small- systems that lead to movement of the bowels. The
intestinal activity is primarily the mixing of contents by bursts amount of dietary ber consumed is related to stool
of propagated motor activity that are associated with increased size and consistency.10
gastric, pancreatic, and biliary secretion. This motor activity 3. Physical activity. Colonic propulsion is related to
occurs every 90 to 120 minutes but is altered when food is intraluminal pressures in the colon. Lack of physical
ingested. Contents are mixed to allow for digestion and absorp- activity and reduced intraluminal pressures can
tion of nutrients. When the stomach has emptied, the small signicantly reduce propulsive activity.11
intestine returns to regular propagated motor activity.1 4. Adequate time or privacy to defecate. Changes in
The colon propels contents forward through peristaltic normal bowel routines, such as morning coffee or
movements. The colon movement is much slower than that of reading the paper, can decrease peristalsis and lead
the small intestine. Contents may remain in the colon for up to to constipation. Emotional disturbances are also
2 to 3 days, whereas small-intestinal transit is 1 to 2 hours. Motor known to affect gut motility.10
activity in the large intestine occurs approximately six times per
day, usually grouped in two peak bursts. The rst is triggered by
awakening and breakfast, and a smaller burst is triggered by o]
the afternoon meal. Contractions are stimulated by ingestion Primary, Secondary, and Iatrogenic Constipation
of food, psychogenic factors, and somatic activity. Sykes8
found that 50% of the constipated patients in a hospice setting Cimprich10 offered three classications of constipation:
had a transit time between 4 and 12 days. 1. Primary constipation is caused by reduced uid and
The physiology of defecation involves coordinated interac- ber intake, decreased activity, and lack of privacy.
tion between the involuntary internal anal sphincter and the 2. Secondary constipation is related to pathological
voluntary external anal sphincter. The residual intestinal con- changes. These changes may include tumor, partial
tents distend the rectum and initiate expulsion. The longitudi- intestinal obstruction, metabolic effects of
nal muscle of the rectum contracts, and with the voluntary hypercalcemia, hypothyroidism, hypokalemia, as
external anal sphincter relaxed, defecation can occur. Addi- well as spinal cord compression at the level of
tional coordinated muscle activity also occurs and includes the cauda equina or sacral plexus.
contraction of the diaphragm against a closed glottis, tensing 3. Iatrogenically induced constipation is related to phar-
of the abdominal wall, and relaxation of the pelvic oor. macological interventions. Opioids are the primary
The enteric nervous system plays an important role in the medications associated with constipation. In addi-
movement of bowel contents through the gastrointestinal (GI) tion, Vinca rosea alkaloid chemotherapies (vin-
tract as well. Smooth muscles in the GI tract have spontaneous cristine), anticholinergic medications (belladonna,
electrical, rhythmic activity, resembling pacemakers in the stom- antihistamines), tricyclic antidepressants (nortripty-
ach and small intestine, that communicate with the remainder of line, amitriptyline), neuroleptics (haloperidol and
the bowel. There are both submucosal and myenteric plexuses chlorpromazine), antispasmodics, anticonvulsants
of nerves. These nerves are connected to the central nervous (phenytoin and gabapentin), muscle relaxants, alu-
system through sympathetic ganglia, splanchnic nerves, and minum antacids, iron, diuretics (furosemide), and
parasympathetic bers in the vagus nerve and the presacral antiparkinsonian agents cause constipation.1,3,9
plexus. Opioid medications affect the myenteric plexus, which
coordinates peristalsis. Therefore, peristalsis is decreased and
stool transit time is decreased, leading to harder, dryer, and less o]
frequent stools, or constipation.1,9 Constipation Related to Cancer and Its Treatment
Important factors that promote normal functioning of the
bowel include the following: Multiple factors associated with cancer and its treatment cause
constipation. When it primarily involves the GI system or is
1. Fluid intake. Nine liters of uid (which includes anatomically associated with the bowel, cancer itself causes
7 liters secreted from the salivary glands, stomach, constipation. Pelvic cancers, including, ovarian, cervical, and
pancreas, small bowel, and biliary system, and the uterine cancers, are highly associated with constipation and
average oral intake of 2 liters) are reduced to mechanical obstruction.10 Malignant ascites, spinal cord com-
1.5 liters by the time they reach the colon. At this pression, and paraneoplastic autonomic neuropathy also cause
point, water and electrolytes continue to be constipation. Cancer-related causes include surgical interrup-
absorbed, and the end volume for waste is 150 mL. tion of the GI tract, decreased activity, reduced intake of both
Therefore, decreased uid intake can make a signi- fluids and food, changes in personal routines associated with
cant difference in the development of constipation. bowel movements, bed rest, confusion, and depression.13,8,10,14
Bowel Management: Constipation, Diarrhea, Obstruction, and Ascites 221
o] or mucus? Were their bowels physically difcult to move? This

Opioid-Related Constipation is especially important if they have cancer in or near the intes-
tines or rectal area that may contribute to physical obstruc-
Opioids affect bowel function primarily by inhibiting propul- tion. Ovarian cancer patients usually complain of feeling
sive peristalsis through the small bowel and colon.1,2 McMillan severely bloated. They may say things like If you stick a pin in
and Williams12 found that 100% of the patients in their study me, I know I will pop! Evaluating the abdomen or asking
who had received at least 30 mg of morphine in the previous patients if they feel bloated or pressure in the abdomen is
24 hours developed constipation. Opioids bind with the recep- important. Does the patient feel pain when moving the bow-
tors on the smooth muscles of the bowel, affecting the contrac- els? Is the patient oozing liquid stool? Does the patient feel that
tion of the circular and longitudinal muscle bers that cause the volume of stool passed is small? Many patients may expe-
peristalsis or the movement of contents through the bowel.2,14 rience unexplainable nausea.13
Colonic transit time is lengthened, contributing to increased
uid and electrolyte absorption and dryer, harder stools.13 Medication- or Disease-Related History
Peristaltic changes occur 5 to 25 minutes after administration of
the opioid and are dose related. Patients do not develop toler- The patients medical status and anticipated disease process are
ance to the constipation side effects even with long-term use of important in providing insight into areas where early interven-
opioids.5 There is new evidence, particularly associated with tion could prevent severe constipation or even obstruction.
transdermal fentanyl use, that constipation severity may differ Constipation may be anticipated with primary and secondary
among opioids.13 The use of laxatives and stool softeners with bowel cancer, as well as with pelvic tumors, peritoneal mesothe-
opioids represents a rational, proactive approach to opioid- lioma or spinal cord compression, previous bowel surgery, or a
induced constipation. history of Vinca alkaloid chemotherapy. Changes in dietary
habits related to the above medications or the addition of new
medications may contribute to constipation.1 Anticholinergic
o] medications, antihistamines, tricyclic antidepressants, alu-
Assessment of Constipation minum antacids, and diuretics can cause constipation. Hyper-
calcemia and hypokalemia contribute to constipation by
History slowing down motility. Ask patients if there are things they do to
aid in defecation. Sometimes physical actions the patient may
The measurement of constipation requires more than assess- use can help causes related to rectocele, or rectal ulcer.15 Table
ing the frequency of stools alone. Managing constipation 111 outlines causes of constipation in cancer and other pallia-
requires a thorough history and physical examination. tive care patients.
The use of a quantifying tool can be helpful in understand-
ing what the patient is experiencing and how different that Physical Examination
may be from the usual or baseline bowel habit. A tool devel-
oped in 1989, the Constipation Assessment Scale (CAS), has Begin the physical examination in the mouth, to ensure that
been tested for validity and reliability and found to have a sig- the patient is able to chew foods and that there are no lesions
nicant ability to measure constipation as well as its severity or tumors in the mouth that could interfere with eating. Does
between moderate and severe constipation. It is a simple ques- the patient wear dentures? Patients who wear dentures and
tionnaire that requires 2 minutes to complete (Figure 111). have lost a great deal of weight may have dentures that do not
The CAS includes eight symptoms associated with constipa- t properly, which would make eating and drinking difcult.
tion: (1) abdominal distention or bloating, (2) change in Patients may choose to eat only what they are able to chew as a
amount of gas passed rectally, (3) less frequent bowel move- result of their dentures or other dental problems. Therefore,
ments, (4) oozing liquid stool, (5) rectal fullness or pressure, they may not be eating enough ber and, thus, contributing to
(6) rectal pain with bowel movement, (7) small volume of primary constipation.
stool, and (8) inability to pass stool.12 These symptoms are
rated as 0, not experienced; 1, some problem; or 2, severe prob- Abdominal Examination. Inspect the abdomen initially for
lem. A score between 0 and 16 is calculated and can be used as bloating, distention, or bulges. Distention may be associated
an objective measurement of subjective symptoms for ongo- with obesity, uid, tumor, or gas. Remember, the patient should
ing management. have emptied the bladder. Auscultation is important to evalu-
The CAS gives a good sense of bowel function.12 Sykes15 ate the presence or absence of bowel sounds. If no bowel
also outlines similar questions to use in taking a constipation sounds are heard initially, listen continuously for a minimum
history. It is important to start by asking patients when they of 5 minutes. The absence of bowel sounds may indicate a par-
moved their bowels last and to follow up by asking what their alytic ileus. If the bowel sounds are hyperactive, it could indicate
normal movement pattern is. Remember, what is considered diarrhea. Percussion of the bowel may result in tympany,
constipated for one person is not for someone else. What are which is related to gas in the bowel. A dull sound is heard over
the characteristics of their stools and did they note any blood intestinal uid and feces. Palpation of the abdomen should
Figure 111. Constipation Assessment

Scale. Source: McMillan et al. (1989), refer-
ence 12. Reproduced with permission.
start lightly; look for muscular resistance and abdominal ten- obvious. Evaluating the patient for infection, ulceration, or
derness. This is usually associated with chronic constipation. If rectal ssures is very important. Additionally, determine
rebound tenderness is detected with coughing or light palpation, whether the patient has had previous intestinal surgery, alter-
peritoneal inammation should be considered. Deep palpa- nating diarrhea and constipation, complaints of abdominal
tion may reveal a sausage-like mass of stool in the left colon. colic pain or nausea, and vomiting. Examining the stool for
Feeling stool in the colon indicates constipation.2 Although shape and consistency can also be useful. Stools that are hard
Sykes15 points out that the distinction between tumor and stool and pellet-like suggest slow transit time, whereas stools that
is hard to make, recognizing the underlying anatomy is helpful are ribbon-like suggest hemorrhoids. Blood or mucus in the
in distinguishing the stool along the line of the descending stool suggests tumor, hemorrhoids, or possibly a preexisting
colon or more proximal colon, including the cecum. A digital colitis.15 Elderly patients may experience urinary inconti-
examination of the rectum may reveal stool or possible tumor nence related to fecal impaction.1,2,14 Abdominal pain may
or rectocele. If the patient is experiencing incontinence of liq- also be related to constipation. Patients will complain of colic
uid stool, obstruction must be considered. Examining for pain related to the effort of colonic muscle to move hard
hemorrhoids, ulcerations, or rectal ssures is important, espe- stool. The history may be complicated by known abdominal
cially in the neutropenic patient. Patients with a neutropenia tumors. Patients in pain should still be treated with opioids as
can complain of rectal pain well before a rectal infection is needed.
Table 111
Causes of Constipation in Cancer/Palliative Care Patients
Cancer-Related
Directly related to tumor site. Primary bowel cancers, secondary bowel cancers, pelvic cancers.
Hypercalcemia. Surgical interruption of bowel integrity.
Etiology
Intestinal obstruction related to tumor in the bowel wall or external compression by tumor. Damage to the lumbosacral spinal cord,
cauda equina, or pelvic plexus. High spinal cord transection mainly stops the motility response to food. Low spinal cord or pelvic
outow lesions produce dilation of the colon and slow transit in the descending and distal transverse colon. Surgery in the abdomen
can lead to adhesion development or direct changes in the bowel.
Hypercalcemia
Cholinergic control of secretions of the intestinal epithelium is mediated by changes in intracellular calcium concentrations.
Hypercalcemia causes decreased absorption, leading to constipation, whereas hypercalcemia can lead to diarrhea.
Secondary Effects Related to the Disease

Decreased appetite, decreased uid intake, low-ber diet, weakness, inactivity, confusion, depression, change in normal toileting habits
Etiology
Decreased uid and food intake leading to dehydration and weakness. Decreased intake, ineffective voluntary elimination actions, as
well as decreased normal defecation reexes. Decreased peristalsis; increased colonic transit time leads to increased absorption of uid
and electrolytes and small, hard, dry stools. Inactivity, weakness, changes in normal toileting habits, daily bowel function reexes, and
positioning affect ability to use abdominal wall musculature and relax pelvic oor for proper elimination. Psychological depression can
increase constipation by slowing down motility.
Concurrent Disease
Diabetes, hypothyroidism, hypokalemia, diverticular disease, hemorrhoids, colitis, chronic neurological diseases
Etiology
Electrolytes and therefore water are transported via neuronal control. Like hypercalcemia, abnormal potassium can affect water
absorption and contribute to constipation. Chronic neurological diseases affect the neurological stimulation of intestinal motility.
Medication-Related
Opioid medications
Anticholinergic effects (hydroscine, phenothiazines)
Tricyclic antidepressants
Antiparkinsonian drugs
Iron
Antihypertensives, antihistamines
Antacids
Diuretics
Vinka alkaloid chemotherapy
Etiology
Opioids in particular suppress forward peristalsis and increase sphincter tone. Opioids increase electrolyte and water absorption in
both the large and small intestine; this leads to dehydration and hard, dry stools. Morphine causes insensitivity of the rectum to
distention, decreasing the sensation of the need to defecate. Vinca alkaloid chemotherapy has a neurotoxic effect that causes damage to
the myenteric plexus of the colon. This increases nonpropulsive contractions. Colonic transit time is increased, leading to constipation.
Antidepressants slow large bowel motility. Antacids (bismuth, aluminum salts) cause hard stools.
Sources: Levy (1991), reference 1; Sykes (1996), reference 9.

o] have available in the bowel and makes the bowels more difcult
Management of Constipation to move.1,2,8 For example, an elderly patient who experiences
reduced appetite and decreased uid intake related to chemother-
Preventing constipation whenever possible is the most impor- apy or disease, and whose symptoms are nausea or vomiting with
tant management strategy. Constipation can be extremely dis- reduced activity, is at extreme risk for constipation. Encouraging
tressing to many patients and severely affects quality of life. The activity whenever possible, even in end-of-life care, can be very
complicating factor remains the individuality of a patients helpful. Increased activity helps to stimulate peristalsis and to
response to constipation therapy. Therefore, there is no set rule improve mood.1,7 Physical therapy should be used as part of a
for the most effective way to manage constipation. Patients multidisciplinary bowel-management approach. Providing basic
with primary bowel cancers, pelvic tumors such as ovarian or range of motion, either active or passive, can improve bowel man-
uterine cancers, or metastatic tumors that press on colon struc- agement and patient satisfaction.2,11
tures will experience a difcult-to-manage constipation. It is
not unusual for those patients to be admitted to the hospital to Pharmacological Management
manage constipation and to rule out obstruction. To minimize
those admissions whenever possible, as Dame Cicely Saunders, Types of Laxatives
the founder of hospice recommends, Do not forget the bow-
els. Nurses are at the bedside most often and are the ones who Bulk Laxatives. Laxatives can be classied by their actions.
see the cumulated number and types of medication a patient Bulk laxatives do just thatthey provide bulk to the intestines
may be taking. Understanding which medications and disease to increase mass, stimulating the bowel to move. Increasing
processes put a patient at high risk for constipation is essential dietary ber is considered a bulk laxative. The recommended
for good bowel management. dose of bran is 8 g daily. Other bulk laxatives include psyllium,
Assessing the patients constipation as discussed earlier is carboxymethylcellulose, and methylcellulose.15 Bulk laxatives
the best place to start. The patients problem list should reect are more helpful for mild constipation. Because bulk laxatives
the risk for constipation and the need for aggressive consti- work best when patients are able to increase their uid intake,
pation management. For example, diabetic patients who are they may be inappropriate for end-stage patients. In palliative
taking opioids for pain are at extremely high risk for consti- care, patients may not ingest enough uid. It is recommended
pation. Diabetes damages the sensory bers that are most that the patient increase uids by 200 to 300 mL when using
important for temperature and pain sensation. The neuronal bulk laxatives. Patients may have difculty with the consis-
inuence on intestinal motility is also affected through dia- tency of bulk laxatives and nd this approach unacceptable.
betes.2,6,10 Patients using bulk laxatives without the additional uid
In addition to assessing the extent of the patients constipa- intake are at risk of developing a partial bowel obstruction or,
tion, determining the methods the patient has used to manage if an impending one exists, may risk complete bowel obstruc-
the constipation in the past is essential. This can usually pro- tion. The benets of bulk laxatives in severe constipation are
vide information regarding what medications the patient tol- questionable.
erates best and where to start with recommendations for Additional complications include allergic reactions, uid
management. According to Sykes,8 using radiography to eval- retention, and hyperglycemia.1 Bulk laxatives produce gas as
uate whether constipation has advanced to obstruction may the indigestible or nonsoluble ber breaks down or ferments.
be useful if there is indecision, but in palliative medicine the The result can be uncomfortable bloating and gas.
use of x-ray procedures should be limited. He also suggests The recommended dosage of bulk laxatives is to start with
that blood work be limited to corrective studies; for example, 8 g daily, then stabilize at 3 to 4 g for maintenance.
if hypercalcemia or hyperkalemia can be reversed to improve Psyllium is recommended at 2 to 4 teaspoons daily as a bulk
constipation, such blood work may be useful. laxative. Action may take 2 to 3 days.
Improving three important primary causes of constipation
is essential. Encouraging uid intake is a priority. Increasing or Lubricant Laxatives. Mineral oil is probably the most com-
decreasing uid intake by as little as 100 mL can contribute to mon lubricant laxative used. It can help by both lubricating
constipation.1,15 Increase dietary intake as much as possible. the stool surface and softening the stool by penetration, lead-
This is a difcult intervention for many patients. Focusing on ing to an easier bowel movement. Overuse of mineral oil can
food intake for some patients can increase their anxiety and cause seepage from the rectum and perineal irritation. With
discomfort. If a patient feels that bowel movements are less fre- chronic use it can lead to malabsorption of fat-soluble vita-
quent, think about dietary intake. The Western diet is ber- mins (vitamins A, D, E, and K). Levy1 recommends caution
decient.1,5,11,15 Caution is needed for patients who use bulk when giving mineral oil at bedtime or giving it to patients at
laxatives such as psyllium, especially if they also are taking risk for aspiration. Aspiration pneumonitis or lipoid pneumo-
other bowel medications. Increasing the ber intake for nia is common in the frail and elderly patient. A complication
patients in general may be helpful, but in palliative care, high should be noted when mineral oil is given with docusate. If
fiber in the diet can cause more discomfort and constipation. patients are on daily docusate (Colace) and are given mineral
Fiber without uid absorbs what little liquid the patient may oil in addition to assist with constipation, the absorption of
mineral oil increases, leading to a risk of lipoid granuloma in

the intestinal wall.1 Table 112
Senokot S Laxative Recommendations for
The recommended dosage of mineral oil is 10 to 30 mL/day,
Cancer-Related Constipation
and action may occur in 1 to 3 days.
Day 0
Surfactant/Detergent Laxatives. Surfactant/detergent laxa- Senokot S 2 tablets at bedtime
tives reduce surface tension, which increases absorption of If no BM on day 1
water and fats into dry stools, leading to a softening effect.
According to Levy1 and others,2,6,9 medications such as docusate Senokot S 2 tablets Bid.
exert a mucosal contact effect, which encourages secretion of If no BM on day 2
water, sodium, and chloride in the jejunum and colon and Senokot S 3 or 4 tablets Bid or Tid.
decreases electrolyte and water reabsorption in the small and If no BM on day 3
large intestine.4 At higher doses, these laxatives may stimulate Dulcolax 2 or 3 tablets Tid and/or Hs.
peristalsis. Docusate is used in a compounded or xed combi-
If no BM, rule out impaction
nation with bowel stimulants like casanthranol (Peri-Colace)
or senna (Senokot S). Castor oil also works like a detergent If impacted:
laxative by exerting a surface-wetting action on the stool and Lubricate rectum with oil-retention enema
directly stimulates the colon, but Levy1 discourages its use in Medicate with opioid and/or benzodiazepine
cancer-related constipation because results are difcult to Disimpact
control. Give enemas until clear.
The recommended dosage of surfactant/detergent laxatives Increase daily laxative therapy per above
includes docusate (Colace) starting at 300 mg daily and cal-
cium salt (Surfak) at 240 mg daily to twice a day. (This may If not impacted:
take 1 to 3 days to be effective.) Give additional laxatives:
Lactulose (4560 mL PO)
Combination Medications. Peri-Colace is a combination of a Magnesium citrate (8 oz)
mild stimulant laxative, casanthranol, and the stool softener Dulcolax suppository (1 PR)
docusate (Colace). Combination softener/laxative medications Fleet enema (1 PR)

have been shown to be more effective than softeners alone at a
At any step, if medication is ineffective, continue at that dose.
lower total dose.9
If < 1 BM per day, increase laxative therapy per steps. If
The recommended dosage of Senokot S is two tablets daily > 2 BM per day, decrease laxative therapy by 24% to 50%.
to twice a day (see Senokot S ow chart in Table 112). Senokot
is a combination of senna as a laxative and a stool softener for Source: Adapted from Levy (1991), reference 1.
smoother and easier evacuation. Results occur in 6 to 12 hours.
Flexibility of dosing allows individual needs to be met.
bowel movement occurs. Once that happens, calculate the
Osmotic Laxatives. Osmotic laxatives are nonabsorbable sug- amount of lactulose used to achieve that movement, and then
ars that exert an osmotic effect in both the small and, to a lesser divide in half for recommended daily maintenance dose.1 An
extent, the large intestines. They have the additional effect of example would be: it took 60 mL to have a bowel movement,
lowering ammonia levels. This is helpful in improving confu- therefore 30 mL daily should keep the bowels moving regu-
sion, especially in hepatic failure patients. According to Levy,1 larly. Action can occur within 4 hours, depending on the dose.
30 mL of lactulose can increase the colon volume by 400 to Polyethylene glycol (MiraLax) is used frequently and can be
600 mL within 1 to 3 hours. These laxatives can be effective for sprinkled over food. Recommended dose is 1 tablespoon.
chronic constipation, especially when related to opioid use. Evacuation can take between 2 to 4 days. If bowel obstruction
Drawbacks of these agents are that effectiveness is completely is suspected, do not use.18 Osmotic rectal compounds include
dose-related and, for some patients, the sweet taste is intolera- glycerin suppositories and sorbitol enemas. Glycerin supposi-
ble. The bloating and gas associated with higher doses may be tories soften stool by osmosis and act as a lubricant. In one
too uncomfortable or distressing to tolerate. Lactulose or sor- study, bisacodyl (Dulcolax) suppositories were more effective
bitol can be put into juice or other liquid to lessen the taste. for moving the bowel than glycerin suppositories in chroni-
Patients may prefer hot tea or hot water to help reduce the cally ill and geriatric patients.5
sweet taste. Lactulose is more costly than sorbitol liquid. A Dulcolax acts directly on the mucous membrane of the
study that compared the two medications found that there was large intestine, causing a reex stimulation. Because it is not
no signicant difference, except with regard to nausea, which absorbed in the small intestine, it can pass through without
increased with lactulose (P = 0.05).17 side effects. It can be especially helpful for bowel training or
The recommended dosage of lactulose/sorbitol is 30 to bedridden patients with dyschezia, or an incomplete reex for
60 mL initially for severe constipation every 4 hours until a defecation.
Suppositories should never be used in patients with Table 11-2). These stimulating laxatives are the most effective
severely reduced white cell or platelet counts due to the risk of management for opioid-related constipation. Bisacodyl comes
bleeding or infection. in 10-mg tablets or suppositories and is used daily. The suppos-
itory medication has a faster onset that is much appreciated in
Saline Laxatives. Magnesium hydroxide (milk of magnesia) the uncomfortable, constipated patient.
and magnesium citrate are the most commonly used saline lax-
atives. They increase gastric, pancreatic, and small intestinal Suppository Medications. As discussed above, bisacodyl (Dul-
secretion, as well as motor activity throughout the intestine. Alu- colax) comes in a suppository. Although the thought of rectal
minum salts in many of the antacid medications counteract medications is unpleasant for many patients, suppositories
the laxative effect of magnesium. This laxative can also cause quick onset of action makes them more acceptable. Bisacodyl
severe cramping and discomfort. This medication is recom- comes in 10 mg for adults and 5 mg as a pediatric dose.
mended for use only as a last resort in chronically ill patients. Liquid rectal laxatives or lubricants should be used infre-
Opioid-related constipation requires the use of aggressive laxa- quently. In severely constipated patients, they may be neces-
tives earlier rather than later to prevent severe constipation, sary. Most commonly, saline enemas are used to loosen the
referred to as obstipation, which leads to obstruction. stool and to stimulate rectal or distal colon peristalsis. Repeated
The recommended dosage of milk of magnesia is 30 mL to use can cause hypocalcemia and hyperphosphatemia, so it is
initiate a bowel movement. For opioid-related constipation, important to use enemas cautiously. Enemas should never be
15 mL of milk of magnesia may be added to the baseline bowel considered part of a standing bowel regimen.
medications either daily or every other day. Magnesium citrate Oil retention enemas, however, are particularly helpful for
comes in a 10-ounce bottle. For severe constipation, it is used severely constipated patients, for whom disimpaction may be
as a one-time initial therapy. It can be titrated up or down, necessary. They work best when used overnight, to allow soft-
depending on patient response. For patients with abdominal ening. Overnight retention is effective only if the patient is
discomfort or pain, it is recommended that obstruction be ruled able to retain it that long. The general rule is that the longer
out before using this medication. If the patient were obstructed, the enema is retained, the better the results. Bisanz10 recom-
even only partially, this would only increase the discomfort or mends a milk-and-molasses enema (Figure 112) for patients
lead to perforation.14 with low impaction to ease stool evacuation in a nonirritating
way. It is a low-volume enema of 300 mL and therefore thought
Bowel Stimulants. Bowel stimulants work directly on the colon to cause less cramping.
to increase motility. These medications stimulate the myenteric Combining an enema with an oral saline-type cathartic
plexus to induce peristalsis. They also reduce the amount of (lactulose, Cephylac) is helpful when a large amount of stool is
water and electrolytes in the colon. They are divided into two present.1,10 This may help to push the stool through the GI
groups: the diphenylmethanes and the anthraquinones. The tract.
diphenylmethanes are commonly known as phenolphthalein If disimpaction is necessary, remember that it can be
(Ex-Lax, Fen-a-Mint, Correctol, and Doxidan) and bisacodyl extremely painful; therefore, premedicate the patient with either
(Dulcolax). Phenolphthalein must be metabolized in the liver opioid and/or benzodiazepine anxiolytics to reduce physical and
rather than in the colon. Levy1 points out that because the effect emotional pain.2,3,15
is difcult to control and hepatic circulation is signicant, this There are few studies outlining the efcacy of one enema
class of stimulants may not be appropriate for cancer-related over another. The reported success rates for rectal enemas
constipation. The anthraquinones are bowel stimulants that
include senna and cascara. They are activated in the large intes- Figure 112. Milk and molasses enema recipe. Sources: Bisanz (1997),
tine by bacterial degradation into the large bowel, stimulating reference 10; Lowell (2003), reference 23; Walsh (1989), reference 50.
glycosides. The negative side of bisacodyl is its cramping side
effect. This action causes a 6- to 12-hour delay when taken orally.
Rectal absorption is much faster, at 15 to 60 minutes. It is recom- MILK and MOLASSES ENEMA RECIPE
mended that bisacodyl be taken with food, milk, or antacids to
8 oz. warm water
avoid gastric irritation. One Senokot S can counter the constipa-
3 oz. powdered milk
tion caused by 120 mg of codeine.2 Senna is available in a liquid 4.5 oz. molasses
form called X-Prep Liquid. This is used for bowel cleansing
Put water and powdered milk in a plastic jar. Close the jar
before radiology procedures; 72 mL of X-Prep is equivalent to 10 and shake until the water and milk appear to be fully mixed.
Senokot tablets. Cascara, another anthraquinone, is commonly Add molasses, and shake the jar again until the mixture
combined with milk of magnesia to make a mixture referred to appears to have an even color throughout.
as Black and White. This is a mild combination that reduces Pour mixture into enema bag. Administer enema high by
colic pain. Casanthranol is derived from cascara and is used as gently introducing tube about 12 inches. Do not push beyond
resistance. Repeat every 6 hours until good results are achieved.
the stimulant component in Peri-Colace.
Recommendations for use are senna 15-mg tablets used
alone or as Senokot S. Starting dose is two tablets daily (see
within 1 hour includes phosphate enemas (100%), mini-enemas the trajectory of the disease and the changes that occur in nor-
(Micralax) (95%), bisacodyl suppositories (66%), and glycer- mal activities that affect bowel function. Nurses should also be
ine suppositories (38%).16 If none of the above enemas is effec- alert to medications that can increase the risk of constipation
tive, Sykes9 recommends rectal lavage with approximately 8 (see Table 111). Some patients, especially those on long-term
liters of warmed normal saline. It is important to remember opioid therapy, sometimes need at least two different regimens
that if a patients constipation requires this invasive interven- that can be interchanged when one or the other loses its effec-
tion, you must change the usual bowel regimen once this bowel tiveness for a time. Like opioids, over time, a standing laxative
crisis is resolved. For severe constipation associated with opi- regimen may be less effective if tolerance develops.1,15 It is also
oids, Levy1 suggests four Senokot S and three Dulcolax tablets important to be aware of medication dosing changes, as it is
three times a day and 60 mL of lactulose every other night for a common to forget to increase anticonstipation therapy when
goal of a bowel movement every other day (see Table 112). there is an increase in opioid therapy. Patients generally have
increased risk of constipation when opioids are increased. Posi-
New Approaches to Constipation Management tioning patients to allow gravity to assist with bowel movements
is helpful. Assisting with oral uid intake as well as dietary inter-
Oral naloxone has been studied for the treatment of opioid- ventions are both helpful. Discuss patients management needs
related constipation resistant to other treatments. Culpepper- as well as personal cultural perspectives and factors that may
Morgan and colleagues19 found that the majority of opioid contribute to good bowel hygiene. Exercise within each patients
effect on the human intestine is mediated peripherally rather tolerance is recommended to aid in elimination. Fatigue,
than centrally. Naloxone, which is an opioid antagonist, has advanced disease, and decreased endurance all play a role in
less than 1% availability systemically when given orally, due to obstructing good bowel maintenance. The importance of effec-
the rst-pass effect in the liver. Therefore, the risk of causing a tive bowel management cannot be stressed enough. It remains
withdrawal response when using naloxone orally is small. the most distressing symptom in end-stage cancer patients.
Although the risk is small, patients who are opioid-dependent
must be monitored closely for signs of withdrawal.2 It has been
recommended that the dose start with 1 mg twice per day o]o]o]
and be titrated as a percentage of the current morphine dose. DIARRHEA
Titration of dose to a maximum of 12 mg at least 6 hr apart
may be needed to avoid adverse reactions.19 The cost of oral Diarrhea has been a major symptom and signicant problem
naloxone also prohibits its use beyond rare circumstances. associated with newer chemotherapeutic and biological and
Using naloxone in the outpatient setting is not recommended radiation treatment regimens.20,24 It is a main symptom of 7%
because of the increased risk of withdrawal or dose-benet to 10% of hospice admissions.15 Overgrowth of GI infections
behavior.19 Future studies will look at alternative drugs from such as Candida can cause diarrhea as well.15 Treating diarrhea
the same class that do not cross the bloodbrain barrier and requires a thorough assessment and therapy directed at the
that may offer more effective results.15 specic cause. Diarrhea is usually acute and short-lived, last-
Oral erythromycin has been shown to cause diarrhea in 50% ing only a few days, as opposed to chronic diarrhea, which lasts
of patients who use it as an antibiotic.15 Currently, researchers 3 weeks or more.24 Diarrhea can be especially severe in human
are investigating its use to promote diarrhea. There is also inter- immunodeciency virus (HIV)infected patients. Forty-three
est in identifying a medication that would increase colon transit percent of bone marrow transplant patients develop diarrhea
time without being antibacterial. related to radiation or graft versus host disease (GVHD).25
Many herbal medicines have laxative properties, such as Similar to constipation, this symptom can be debilitating and
mulberry and constituents of rhubarb, which are similar to can severely affect quality of life.19,20 Diarrhea can prevent
senna. These herbs are being evaluated for use as laxatives. patients from leaving their homes, increase weakness and
Patients have been known to develop rashes; in one patient, dehydration, and contribute to feelings of lack of control and
changes were found in warfarin (Coumadin) levels that were depression. Nurses play a signicant role in recognizing, edu-
related to natural warfarin found in a laxative tea. Many patients cating, and managing diarrhea and its manifestations.
prefer these options instead of pharmaceutical laxatives, but
they should be cautious about where they purchase any herbal Denitions
product and be alert to any unexplained side effects, as their
content is unregulated. Diarrhea is described as an increase in stool volume and liq-
uidity resulting in three or more bowel movements per day.1,24
Secondary effects related to diarrhea include abdominal
o] cramps, anxiety, lethargy, weakness, dehydration, dizziness,
Nursing Interventions for Constipation loss of electrolytes, skin breakdown and associated pain, dry
mouth, and weight loss. Diarrhea varies among patients depend-
Nurses should always be proactive in initiating laxative ther- ing on their bowel history. Acute diarrhea occurs within 24 to
apy. Bowel function requires continued evaluation to follow 48 hours of exposure to the cause and resolves in 7 to 14 days.
Chronic diarrhea usually has a late onset and lasts 2 to 3 weeks, blood acts as an osmotic laxative. Osmotic diarrhea may result
with an unidentied cause. from insufcient lactase when dairy products are consumed.
Prevalence and Impact Secretory Diarrhea. Secretory diarrhea is most associated with
chemotherapy and radiation therapy. The cause is related to
Cancer patients may have multiple causes of diarrhea. It may mechanical damage to the epithelial crypt cells in the GI tract.21
be due to infections or related to tumor type or its treatment. The necrosis that results, along with the inammation and
A common cause of diarrhea is overuse of laxative therapy or ulceration of the intestinal mucosa, leads to further damage
dietary ber. Additional causes include malabsorption disor- related to exposure to bile and susceptibility to opportunistic
ders, motility disturbances, stress, partial bowel obstruction, infections, atrophy of the mucosal lining, and brosis. This all
enterocolic stula, villous adenoma, endocrine-induced hyper- contributes to loss of absorption due to damaged villi, causing
secretion of serotonin, gastrin calcitonin, and vasoactive intes- an increase in water, electrolytes, mucus, blood, and serum to
tinal protein prostaglandins.1,20,24 Treatment-related causes be pulled into the intestine from immature crypt cells, and
include radiation and chemotherapy, which cause overgrowth increased uid secretion, resulting in diarrhea.20,21
of bacteria, with endotoxin production that has a direct effect Secretory diarrhea is the most difcult to control. Malig-
on the intestinal mucosa. Local inammation and increased nant epithelial tumors producing hormones that can cause
uid and electrolyte secretion occur, resulting in interference diarrhea include metastatic carcinoid tumors, gastrinoma,
with amino acid and electrolyte transport and a shift toward and medullary thyroid cancer. The primary effect of secretory
secretion by crypt cells with shortened villi.20 diarrhea is related to the hypersecretion stimulated by endoge-
Diarrhea associated with radiation can occur by the 2nd or nous mediators that affect the intestinal transport of water
3rd week of treatment and can continue after radiation has and electrolytes. This results in accumulation of intestinal u-
been discontinued.15,20,21 Radiation-induced diarrhea is related ids.22,34 Diarrhea associated with GVHD results from mucosal
to focus of radiation and total of radiation dose. Pelvic radiation damage and can produce up to 6 to 8 liters of diarrhea in
alone has been shown to cause diarrhea of any grade in up to 24 hours.35 Surgical shortening of the bowel, which reduces
70% of the patients receiving it. A grade 3 or 4 diarrhea is asso- intestinal mucosal contact and shortens colon transit time,
ciated with approximately 20% of those patients.21 causing decreased reabsorption, leads to diarrhea. Active treat-
The risk is increased in acquired immunodeciency syn- ment requires vigorous uid and electrolyte repletion, antidiar-
drome (AIDS), GVHD, or HIV patients. The end result could rheal therapy, and specic anticancer therapy.1,22
be a change in the intestinal mucosa that results in a limited Preventing diarrhea associated with chemotherapy and
ability to regenerate epithelium, which can lead to bleeding radiation is not always realistic, but being proactive in antici-
and ileus. The damaged mucosa leads to increased release of pating diarrhea and prompt management may be effective.22,24
prostaglandins and malabsorption of bile salts, increasing Initiation of medication with the rst episode is suggested.
peristaltic activity.15,24 The recommendation starts with loperamide 4 mg, then 2 to
Surgical patients who have had bowel-shortening proce- 4 mg q 2 to 4 hours (max 16 mg/24 h). If there is no response at
dures or gastrectomy related to cancer experience a dumping 24 to 48 hours, then, based on grade, either increase the lop-
syndrome, which causes severe diarrhea. This type of diar- eramide dose, then reevaluate in 24 hours, or start octreotide
rhea is related to both osmotic and hypermotile mechanisms.1 100 to 500 mcg subcutaneously, three times a day for grades 3 to
Patients may experience weakness, epigastric distention, and 4 diarrhea.22 The somatostatin analogue octreotide is used for
diarrhea shortly after eating.34 The shortened bowel can result grades 3 to 4 diarrhea with success. A study done by Barbounis
in a decreased absorption capacity and an imbalance in absorp- and colleagues in patients experiencing chemotherapy-induced
tive and secretory function of the intestine. diarrhea unresponsive to loperamide had a 92% response to
octreotide SC 500 mcg three times daily.26 A major trial known
Pathophysiology as the STOP trial (Sandostatin LAR Depot Trial for the Opti-
mum Prevention of Chemotherapy-Induced Diarrhea) has
Diarrhea can be grouped into four types, each with a different been initiated to identify optimal dosing and timing schedules
mechanism: osmotic diarrhea, secretory diarrhea, hypermotile for the long-acting version of octreotide. The goal is to prevent
diarrhea, and exudative diarrhea. Cancer patients rarely exhibit high-grade diarrhea that results in dose reduction or cessation
only one type. Understanding the mechanism of diarrhea per- of chemotherapy regimens.23 Cost is a major issue with this
mits more rational treatment strategies.20,24,32 medication; the long-acting version can cost between $10,000
and $20,000 for a single monthly dose.
Osmotic Diarrhea. Osmotic diarrhea is produced by intake of
hyperosmolar preparations or nonabsorbable solutions such Hypermotile Diarrhea. Partial bowel obstruction from abdom-
as enteral feeding solutions.32 Enterocolic stula can lead to inal malignancies can cause a reex hypermotility that may
both osmotic diarrhea from undigested food entering the require bowel-quieting medications such as loperamide.34 Ente-
colon and hypermotile diarrhea. Hemorrhage into the intes- rocolic stula can lead to diarrhea from irritative hypermotility
tine can cause an osmotic-type diarrhea because intraluminal and osmotic inuence of undigested food entering the colon.
Biliary or pancreatic obstruction can cause incomplete The initial goal of assessment is to identify and treat any
digestion of fat in the small intestine, resulting in interference reversible causes of diarrhea. If diarrhea occurs once or twice
with fat and bile salt malabsorption, leading to hypermotile a day, it is probably related to anal incontinence. Large amounts
diarrhea, also called steatorrhea. Malabsorption is related to of watery stools are characteristic of colonic diarrhea. Pale,
pancreatic cancer, gastrectomy, ileal resection or colectomy, fatty, malodorous stools, called steatorrhea, are indicative
rectal cancer, pancreatic islet cell tumors, or carcinoid of malabsorption secondary to pancreatic or small-intestinal
tumors. Chemotherapy-induced diarrhea is frequently seen causes. If a patient who has been constipated complains of
with 5-uorouracil or N-phosphonoacetyl-l-aspartate. High- sudden diarrhea with little warning, fecal impaction with
dose cisplatin and irinotecan (CamptosarTM) cause severe overow is the probable cause.15,24
hypermotility. Other chemotherapy drugs that cause diarrhea Evaluate medications that the patient may be taking now or
include cytosine arabinoside, nitrosourea, methotrexate, in the recent past. Is the patient on laxatives? If the stools are
cyclophosphamide, doxorubicin, daunorubicin, hydroxyurea associated with cramping and urgency, it may be the result of
and biotherapy-2, interferon and topoisomerase inhibitors peristalsis-stimulating laxatives. If stools are associated with
(capecitabine [5-FU prodrug]), oxaliplatin.20,22 fecal leakage, it may be the result of overuse of stool-softening
agents such as Colace.15,24
Exudative Diarrhea. Radiation therapy of the abdomen, pelvis, Depending on the aggressiveness of the treatment plan,
or lower thoracic or lumbar spine can cause acute exudative additional assessment could include stool smears for pus,
diarrhea.24 The inammation caused by radiation leads to the blood, fat, ova, or parasites. Stool samples for culture and sen-
release of prostaglandins. Treatment using aspirin or ibupro- sitivity testing may be necessary to rule out additional sources
fen was shown to reduce prostaglandin release and decrease of diarrhea through C. difficile toxin, Giardia lamblia, or other
diarrhea associated with radiation therapy.24 Bismuth subsali- types of GI infection.1 If patients have diarrhea after 2 to 3 days
cylate (Pepto-Bismol) is also helpful for diarrhea caused by of fasting, secretory diarrhea should be evaluated. Osmotic and
radiotherapy.10 secretory causes are considered rst; if ruled out, then hyper-
According to Sykes,15 there are multiple causes of diarrhea motility is the suspected mechanism.
in palliative medicine. Concurrent diseases such as diabetes
mellitus, hyperthyroidism, inammatory bowel disease, irrita-
ble bowel syndrome, and GI infection (C. difcile) can con- o]
tribute to the development of diarrhea. Finally, the dietary Management of Diarrhea
inuences of fruit, bran, hot spices, and alcohol, as well as
over-the-counter medications, laxatives, and herbal supple- A combination of supportive care and medication may
ments, need to be considered as sources of diarrhea.15,24 be appropriate for palliative management of diarrhea. The
goal of diarrhea management should focus on minimizing
or eliminating the factors causing the diarrhea, providing
o] dietary interventions, and maintaining fluid and electrolyte
Assessment of Diarrhea balance as appropriate. Quality-of-life issues include mini-
mizing skin breakdown or infections, relieving pain associ-
Diarrhea assessment requires a careful history to detail the fre- ated with frequent diarrhea, and maintaining the patients
quency and nature of the stools. The National Cancer Institute dignity.24
Scale of Severity of Diarrhea uses a grading system from 0 to 4. If the patient is dehydrated, oral uids are recommended
Stools are rated by (1) number of loose stools per day and over the IV route.15 Oral uids should contain electrolytes and
(2) symptoms (Table 113). This scale permits an objective a source of glucose to facilitate active electrolyte transport
score to dene the severity of diarrhea. (Figure 113).
Table 113
National Cancer Institute Scale of Severity of Diarrhea
National Cancer Institute Grade

0 1 2 3 4
Increased number Normal 23 46 79 > 10

of loose stools/d
Symptoms None Nocturnal stools Incontinence and/ Grossly bloody diarrhea
and/or moderate or severe cramping and/or need for parenteral
cramping support
effects of that class of drug can complicate their use: dry

ADULT HOMEMADE ELECTROLYTE mouth, blurred vision, and urinary hesitancy.
REPLACEMENT SOLUTION Mucosal antiprostaglandin agents such as aspirin, indo-
methacin, and bismuth subsalicylate (Pepto-Bismol) are use-
1 tsp salt 6 oz. frozen orange juice concentrate
ful for diarrhea related to enterotoxic bacteria, radiotherapy,
1 tsp baking soda 6 cups water
1 tsp corn syrup 47 kcal/cup, 515 mg Na+, 164 mg K+
and prostaglandin-secreting tumors. Octreotide (Sandostatin)
is also effective for patients with AIDS, GVHD, diabetes, or GI
Following diarrhea, the diet should start with clear liquids, flat lemonade, resection.15,31 Octreotide is administered subcutaneously at a
ginger ale, and toast or simple carbohydrates. It is recommended that the dose of 50 to 200 mg two or three times per day. Ranitidine is a
patient avoid milk if diarrhea is related to infection due to acute lactase useful adjuvant to octreotide for patients with Zollinger-Ellison
deficiency. Protein and fats can be added to the diet slowly as diarrhea syndrome with gastrin-induced gastric hypersecretion.1 Side
resolves. Dietary management may help minimize amount of diarrhea.
effects include nausea and pain at injection site. Patients may
also experience abdominal or headache pain.1 Clonidine is
effective at controlling watery diarrhea in patients with bron-
Figure 113. Homemade electrolyte replacement solution for chogenic cancer. Clonidine effects an 2-adrenergic stimulation
adults. Source: Weihofen & Marino (1998), reference 25. of electrolyte absorption in the small intestine.1 Streptozocin is
used for watery diarrhea from pancreatic islet cell cancer
because it decreases intestinal secretions. Hypermotile diar-
rhea involves problems with fat absorption. The recom-
Medication Recommendations mended treatment is pancreatin before meals. Pancreatin is a
combination of amylase, lipase, and protease that is available
There are many nonspecic diarrhea medications that should for pancreatic enzyme replacement. Lactaid may also be help-
be used unless infections are suspected as the cause. If Shigella ful for malabsorption-related diarrhea.
or C. difcile are responsible, nonspecic antidiarrheal med-
ications can make the diarrhea worse.15 Loperamide (Imod-
ium) has become the drug of choice for the treatment of o]
nonspecic diarrhea. It is a long-acting opioid agonist.22 Nursing Interventions for Diarrhea
The 2-mg dose has the same antidiarrheal action as 5 mg, two
tablets of diphenoxylate, or 45 mg of codeine.1 The usual man- Nursing interventions should include nonpharmacological
agement of diarrhea begins with 4 mg of loperamide, with one interventions focused on diet and psychosocial support
capsule following each loose bowel movement. Most diarrhea (Tables 114 and 115).
is managed by loperamide 2 to 4 mg once to twice a day.1,22
Diphenoxylate (Lomotil 2.5 mg with atropine 0.025 mg) is
given as one or two tablets orally as needed for loose Table 114
stools, maximum of eight/day. Diphenoxylate is derived from Nutritional Management of Cancer-Related Diarrhea:
meperidine and binds to opioid receptors to reduce diarrhea. Foods and Medication to Avoid
Atropine was added to this antidiarrheal to prevent abuse.1
Medications
Diphenoxylate is not recommended for patients with advanced
liver disease because it may precipitate hepatic coma in Antibiotics, bulk laxatives (Metamucil, methylcellulose),
patients with cirrhosis.1,22 Neither diphenoxylate nor lop- magnesium-containing medications (Maalox, Mylanta),
promotility agents (propulsid, metoclopramide), stool
eramide is recommended for use in children under 12 years
softeners/laxatives (Peri-Colace, Dulcolax), herbal
old.1 Codeine as an opioid for the reduction of diarrhea can be
supplements (milk thistle, aloe, cayenne, saw palmetto,
helpful. It is also less expensive than some opioid medications. Siberian ginseng)
Most cancer-related diarrheas respond well to this drug. For
specic mechanisms, other medications might be more bene- Foods
cial. Tincture of opium works to decrease peristalsis, given at Milk and diary products (cheese, yogurt, ice cream), caffeine-
.6 mL every 4 to 6 hours. This is a controlled substance but containing products (coffee, tea, cola drinks, chocolate),
may also provide some pain relief.22 Absorbent agents such as carbonated and high-sugar or high-sorbitol juices (prune
pectin and methylcellulose may help provide bulk to increase pear, sweet cherry, peach, apple, orange juice), high-ber/
consistency of the stools.33 gas-causing legumes (raw vegetables, whole-grain products,
Anticholinergic drugs such as atropine and scopolamine dried legumes, popcorn), high-fat foods (fried foods, high-fat
spreads, or dressings), heavily spiced foods that taste hot
are useful to reduce gastric secretions and decrease peristalsis.
Somatostatin analogues such as octreotide (Sandostatin) are also High risk foodssushi, street vendors, buffets
effective for secretory diarrhea that may result from endocrine
Source: Adapted from Stern & Ippoliti (2003), reference 22; Engelking
tumors, AIDS, GVHD, or post-GI resection.1,15,22 They may be (2004), reference 24.
helpful for patients who experience painful cramping.1 Side
Table 115
Nursing Role in the Management of Diarrhea
Environmental Assessment
Assess the patients and/or caregivers ability to manage the level of care necessary.
Evaluate home for medical equipment that may be helpful (bedpan or commode chair).
History
Frequency of bowel movements in last 2 wks
Fluid intake (normal 2 quarts/d)
Fiber intake (normal 3040 g/d)
Appetite and whether patient is nauseated or vomiting. Does diet include spicy foods?
Assess for current medications the patient has taken that are associated with causing diarrhea (laxative use, chemotherapy, antibiotics,
enteral nutritional supplements, nonsteroidal antiinammatory drugs).
Surgical history that may contribute to diarrhea (gastrectomy, pancreatectomy, bypass or ileal resection)
Recent radiotherapy to abdomen, pelvis, lower spine
Cancer diagnosis associated with diarrhea includes abdominal malignancies, partial bowel obstruction; enterocolic stulae; metastatic
carcinoid tumors; gastrinomas; medullary thyroid cancer
Immunosuppressed, susceptible to bacterial, protozoan, and viral diseases associated with diarrhea
Concurrent diseases associated with diarrhea: gastroenteritis, inammatory bowel disease, irritable bowel syndrome, diabetes
mellitus, lactose deciency, hyperthyroidism
Physical Assessment
Examine perineum or ostomy site for skin breakdown, ssures, or external hemorrhoids
Gentle digital rectal examination for impaction
Abdominal examination for distention of palpable stool in large bowel
Examine stools for signs of bleeding
Evaluate for signs of dehydration
Interventions
Treatment should be related to cause (i.e., if obstruction is cause of diarrhea, giving antidiarrheal medications would be
inappropriate).
Assist with correcting any obvious factors related to assessment (e.g., decreasing nutritional supplements, changing ber intake,
holding or substituting medications associated with diarrhea).
If bacterial causes are suspected, notify physician and culture stools as instructed. Clostridium difcile is most common.
Educate patient and family on importance of cleansing the perineum gently after each stool, to prevent skin breakdown. If patient has
a colostomy, stomal area must also be watched closely and surrounding skin protected. Use skin barrier such as Desitin ointment to
protect the skin. Frequent sitz baths may be helpful.
Instruct patient and family on signs and symptoms that should be reported to the nurse or physician: excessive thirst, dizziness, fever,
palpitations, rectal spasms, excessive cramping, water or bloody stools.
Dietary Measures
Eat small, frequent, bland meals.
Low-residue dietpotassium-rich (bananas, rice, peeled apples, dry toast)
Avoid intake of hyperosmotic supplements (e.g., Ensure, Sustacal)
Increase uids in diet. Approximately 3 liters of uid a day if possible. Drinking electrolyte uids such as Pedialyte may be helpful.
Homeopathic treatments for diarrhea include: ginger tea, glutamine, and peeled apples.
Pharmacologic Management
Opioidscodeine, paregoric, dihenoxylate, loperamide, tincture of opium
Absorbentspectin, aluminum hydroxide
(continued )
Table 115
Nursing Role in the Management of Diarrhea (continued )
Adsorbentscharcoal, kaolin
Antisecretoryaspirin, bismuth subsalicylate, prednisone, Sandostatin, ranitidine hydrochloride, indomethacin.
Anticholinergicsscopolamine, atropine sulfate, belladonna
2-Adrenergic agonistsclonidine
Report to nurse or physician if antidiarrheal medication seems ineffective
Psychosocial Interventions
Provide support to patient and family. Recognize negative effects of diarrhea on quality of life:
Fatigue
Malnutrition
Alteration in skin integrity
Pain and discomfort
Sleep disturbances
Limited ability to travel
Compromised role within the family
Decreased sexual activity
Caregiver burden
Source: Levy (1991), reference 1; Bisanz (1997), reference 10; Hogan (1998), reference 49.
Evaluate medications currently being used to linens or trash are removed from the room. Using
identify polypharmacy, where multiple aromatherapy such as lavender may be soothing.
medication side effects may be contributing to Remember that there may be times when adult dia-
the problem. pers are essential and can help alleviate distress
Minimize or prevent diarrhea accidents in an effort to the patient, for example, when traveling or on
to reduce patient anxiety. Anticipate obstacles necessary outings. Remind families to check them
between the patient and the bathroom. Assist with frequently to prevent skin breakdown and, again, be
access plans and timing needs. Recommend com- sure there is skin barrier ointment applied before
mode chair at bedside to allow easiest access and the diaper padding.
prevent falls or additional problems.
Protecting the bed with Chux can be better accepted
than diapers. It may also be better for skin integrity o]
but requires multiple layers of Chux and drawsheets Conclusion
for best results.
Applying skin ointment protection after cleaning Managing diarrhea in the cancer patient is challenging at
and drying the area is also important. Thick protec- best. The nurses role in helping the patient and caregivers
tant creams that apply a barrier on the skin are most talk about this difcult symptom is essential. It is important
benecial. Eucerin cream, zinc oxide, and bag balm to respect comfort levels about the topic among nurse,
are three that have been used anecdotally patient, and caregiver to allow information sharing. Goals of
with success. diarrhea therapy should be to restore an optimal pattern of
The psychosocial impact of diapers can be devastat- elimination, maintain uid and electrolyte balance as desired,
ing for some patients. Encourage a discussion with preserve nutritional status, protect skin integrity, and ensure
patient and family about patient needs, fears, the patients comfort and dignity.10,30
and perceptions.
Along with focus on diet/medications, skin
integrity, and psychosocial needs, odor manage- o]o]o]
ment must also be addressed. Perfumed air freshen- MALIGNANT OBSTRUCTION
ers sometimes only make it worse. Concentrate on
being sure the perineum or periostomy area is clean As primary tumors grow in the large intestine, they can lead
and the linens are not soiled. Also be sure that dirty to obstruction. Obstruction is related to the site and stage of
disease.33 Tumors in the splenic exure obstruct 49% of the Prevalance and Impact
time, but those in the rectum or rectosigmoid junction only
6% of the time.32 Obstruction can occur intraluminally related The best treatment options for bowel obstruction in a patient
to primary tumors of the colon. Intramural obstruction is with advanced cancer remain undetermined.38 As obstruction
related to tumor in the muscular layers of the bowel wall. The increases, bacteria levels increase and can lead to sepsis and
bowel appears thickened, indurated, and contracted.15 Extra- associated multisystem failure and death.33 The difculty is
mural obstruction is related to mesenteric and omental masses knowing which patients will truly benet from surgical inter-
and malignant adhesions. The common metastatic pattern, in vention. The impact of obstruction on the patient and family
relation to primary disease in the pancreas or stomach, gener- is overwhelming. The patient and caregivers have been aggres-
ally goes to the duodenum, from the colon to the jejunum and sively trying to manage the patients constipation in an effort
ileum, and from the prostate or bladder to the rectum.15 to prevent this very problem. Obstruction for patients means
failure to manage constipation or a sign of growing disease.
Denition New interventions have been developed in an effort to provide
additional noninvasive approaches for the management of
Intestinal obstruction is occlusion of the lumen or absence of bowel obstruction.27,28
the normal propulsion that affects elimination from the GI In a retrospective study, Jong and colleagues36 found that pal-
tract.16 Motility disruption, either impaired or absent, leads to liative surgery for bowel obstruction in advanced ovarian cancer
a mechanical obstruction but without occlusion of the intes- achieved successful alleviation, dened as patient survival longer
tinal lumen. Mechanical obstruction results in the accumula- than 60 days after surgery, the ability to return home, and relief
tion of uids and gas proximal to the obstruction. Distention of bowel obstruction for longer than 60 days. Past studies asso-
occurs as a result of intestinal gas, ingested uids, and digestive ciated with ovarian or abdominal cancers found survival rates in
secretions. It becomes a self-perpetuating phenomenon as general to be less than 6 months. In patients for whom a deni-
when distention increases, intestinal secretion of water and tive procedure could take place, such as a resection, bypass,
electrolytes increases. A small-bowel obstruction causes large colostomy, or ileostomy, the mean survival was 6 months. For
amounts of diarrhea. The increased uid in the bowel leads to these patients, who were not surgical candidates, the mean sur-
increased peristalsis, with large quantities of bacteria growing vival rate was 1.8 months. Progressive cancer was the cause of
in the intestinal uid of the small bowel.32 obstruction in 86% of patients.32 There was a postoperative
Obstruction is related to the surrounding mesentery or complication rate of 49%, which included wound infection,
bowel muscle, such as in ovarian cancer. Additional factors enterocutaneous stulae, and other septic sequelae. Median
include multiple sites of obstruction along the intestine postoperative survival was 140 days. In general, the operative
to constipating medications (Table 116), fecal impaction, mortality rate for this group was 12% to 25%.35
fibrosis, or change in normal flora of the bowel. The goal of Further research needs to be done similar to that of Jong
treatment is to prevent obstruction from happening when- and colleagues,36 who evaluated the effects of surgical inter-
ever possible. vention on quality as well as quantity of life. The effect of
unrelieved intestinal obstruction on quality of life for the
patient and loved ones is devastating.
Table 116
Sites of Intestinal Obstruction and Related Side Effects o]
Assessment and Management of
Site Side Effects
Malignant Obstruction
Duodenum Severe vomiting with large amounts of
undigested food. Bowel sounds: Patients may experience severe nausea, vomiting, and abdom-
succussion splash may be present. No inal pain associated with a partial or complete bowel obstruc-
pain or distention noted. tion. In the elderly patient, fecal impaction may also cause
Small intestine Moderate to severe vomiting; usually urinary incontinence.15 General signs and symptoms associ-
hyperactive bowel sounds with ated with different sites of obstruction are listed in Table 116.
borborygmi; pain in upper and central Providing thoughtful and supportive interventions may be
abdomen, colic in nature; moderate more appropriate than aggressive, invasive procedures. The
distention.
signs and symptoms of obstruction may be acute, with nau-
Large intestine Vomiting is a late side effect. sea, vomiting, and abdominal pain. A majority of the time,
Borborygmi bowel sounds, severe however, obstruction is a slow and insidious phenomenon,
distention. Pain central to lower
which may progress from partial to complete obstruction.
abdomen, colic in nature.
Palliative care should allow for a thoughtful and realistic
Source: Baines (1998), reference 16. approach to management of obstruction within the goals of
care. Radiological examination should be limited unless
surgery is being considered. The use of self-expanding metal- A study on the palliative benet of surgery for bowel
lic stents has been highly effective for malignant colorectal obstruction in advanced ovarian cancer found that surgical
obstruction and, in some cases, has prevented the need for intervention provided successful palliation in 51% of the patients
colostomy.28,33 It is done in interventional radiology and requires studied.38 Four prognostic factors for the probable success of
close clinical observation, since perforation is a potential palliative surgery were found: (1) absence of palpable abdominal
complication. At the minimum, it has allowed emergent relief or pelvic masses, (2) volume of ascites less than 3 liters, (3) uni-
of obstruction for surgical intervention in the future. Putting focal obstruction, and (4) preoperative weight loss less than
a patient through an x-ray of the abdomen may be helpful to 9 kg. Sixty-eight percent of the patients survived longer than
conrm the obstruction and identify where it is, but dening 60 days and recovered enough to be able to return home.38
the goal of therapy is essential.33 When patients exhibit signs Surgical interventions can involve resection and reanasto-
of obstruction, a physical exam may be helpful to assess the mosis, decompression, either colostomy or ileostomy, gastroen-
extent of the problem. Asking the patient for a bowel history, terostomy or ileotransverse colostomy, or lysis of adhesions.15,33
last bowel movement, and a description of consistency can be Prospective trials need to be done to further assess the success of
helpful. Does the patient complain of constipation? Physical surgical interventions and their effect on the quality as well as
examination should include gentle palpation of the abdomen the quantity of life.38 Gastrostomy has been shown to be well
for masses or distention. A careful rectal exam can identify tolerated for moderate to long-term decompression.33
the presence of stool in the rectum or a distended empty Surgical intervention should be a decision made between
rectum. An empty, or ballooned, rectum may be a symptom patient and physician within the established goals of care. The
of high obstruction. It is also difcult to distinguish stool patients right to self-determination is essential. As patient
from malignant mass.10,16 The ability to assess whether an advocates, our role is to educate the patient and family. Help-
impaction is low or high in the intestinal tract is important to ing them to understand physician recommendations, as well
help guide the intervention planning. As discussed above, lack as considering their personal desires and options in an effort
of stool noted in the rectum during a digital exam is usually to develop the treatment plan, is essential. Surgical resection
indicative of a high impaction. Stool has not or cannot move for obstructing cancers of the GI tract, pancreatic, or biliary
down into the rectum. The goal then would be to use careful tracts was found to have a 3- to 7-month survival.34 This study
assessment to be sure the obstruction is not a tumor and to pointed out the importance of nutritional status at baseline
concentrate on softening the stool and moving it through the and assessment of performance status for its relationship to
GI tract. Again, using a stimulant laxative for this type of reasonable quality of life.34 The important conclusion of these
patient would result in increasing discomfort and possible studies was to leave the decision to operate with the patient.
rupture of the intestinal wall.10,16 Low impactions are uncom- Mortality is possible. The need for additional surgeries remains
fortable, and patients may need more comforting measures. high due to recurrence of the obstruction, wound infections,
Patients may need to lie down to decrease pressure on the rec- sepsis and further obstruction.33 Survival rates with each sub-
tal area and avoid drinking hot liquids or eating big meals, sequent surgery lessen.
which may increase peristalsis and discomfort until the
impaction can be cleared.10 Alternative Interventions
Nasogastric or nasointestinal tubes have been used to decom-

Radiological Examination press the bowel and/or stomach. Use of these interventions,
although uncomfortable for the patient, has been suggested
Bowel obstruction may be diagnosed on the basis of a plain
for symptom relief while evaluating the possibility of surgery.
abdominal x-ray, but contrast may help identify the site and
Venting gastrostomy or jejunostomy can be a relatively easy
extent of the obstruction. Barium is not recommended because
alternative, which is especially effective for severe nausea and
it may interfere with additional studies.33
vomiting. It can be placed percutaneously with sedation and
local anesthesia. Patients can then be fed a liquid diet, with the
Surgical Intervention tube clamped for as long as tolerated without nausea or
vomiting.16
A percentage of cancer patients may experience nonmalignant
obstruction.35 Therefore, assuming the obstruction is related Symptom Therapy
to worsening cancer may prevent the health care team from
setting realistic treatment goals. A thorough assessment Providing aggressive pharmacological management of the dis-
should be done, with attention to poor prognostic factors.15,38 tressing symptoms associated with malignant bowel obstruction
These factors historically include general medical condition or (MBO) can prevent the need for surgical intervention.15 The
poor nutritional status, ascites, palpable abdominal masses symptoms of intestinal colic, vomiting, and diarrhea can be
or distant metastases, previous radiation to the abdomen or effectively controlled with medications for most patients.
pelvis, combination chemotherapy, and multiple small-bowel Depending on the location of the obstruction, either high
obstructions.35 or low, symptom severity can be affected. As accumulation of
secretions increases, abdominal pain also increases. Disten- Antiemetic Medications

tion, vomiting, and prolonged constipation occur. With high
obstruction, onset of vomiting is sooner and amounts are Some antiemetic medications can also be given SQ and
larger. Intermittent borborygmi and visible peristalsis may combined with an opioid.15 Haloperidol (Haldol) is the classic
occur.32,33 Patients may experience colic pain on top of contin- rst-line antiemetic.37 Phenothiazine, butyrophenone, and
uous pain from a growing mass. In chronic bowel obstruction, antihistamine antiemetics are the most helpful. Recent additions
colic pain subsides. of the selective serotonin antagonists, the 5-hydroxytryptamine
As stated above, the goal of treatment is to prevent obstruction blockers (5-HT3) have made a signicant difference in the treat-
whenever possible. The use of subcutaneous (SQ) or intravenous ment of nausea, especially when combined with corticosteroids
(IV) analgesics, anticholinergic drugs, and antiemetic drugs can for chemotherapy-induced nausea (see also Chapter 9).41 Meto-
be effective for reducing the symptoms of inoperable and hard- clopramide at 10 mg q 4 hours is the drug of choice for patients
to-manage obstruction.38 Octreotide may be an option in early with incomplete bowel obstruction.37 It stimulates the stomach
management to prevent partial obstructions from becoming to empty its contents into the reservoir of the bowel. Once
complete.32 Although octreotide is used for diarrhea because it complete obstruction is present, metoclopramide is discontin-
decreases peristalsis, it also slows the irregular and ineffective ued and haloperidol or another antiemetic medication is
peristaltic movements of obstruction, reducing the activity and started. Haloperidol is less sedating than other antiemetic or
balancing out the intestinal movement.22,32 It reduces vomiting antihistamine medications.16,37 The usual dose ranges from 5 to
because it inhibits the secretion of gastrin, secretin, vasoactive 15 mg/day, and at some institutions, it is combined with
intestinal peptide, pancreatic polypeptide, insulin, and cyclizine.16 Corticosteroids are particularly helpful antiemetics,
glucagon. Octreotide directly blocks the secretion of gastric acid, especially when related to chemotherapy.37
pepsin, pancreatic enzyme, bicarbonate, intestinal epithelial In practice, it is recommended that morphine, haloperidol,
electrolytes, and water.22,38 It has been shown to be effective in and hyoscine butylbromide be given together by continuous
70% of patients for the control of vomiting.15 Octreotide is SQ infusion. If pain or colic increases, the dose of morphine
administered by SQ infusion or SQ injection every 12 hours. A and hyoscine butylbromide should be increased; if emesis
negative aspect of this drug is its cost. It is expensive and requires increases, increase the haloperidol dose.16
SQ injections or SQ or IV infusions over days to weeks. The rec- Fluid and nutrient intake should be maintained as tolerated.
ommended starting dose is 0.3 mg/day and may increase to Usually, patients whose vomiting has improved will tolerate
0.6 mg/day.15 Hyoscine butylbromide is thought to be as effec- uids with small, low-residue meals. Dry mouth is managed
tive as octreotide at reducing GI secretions and motility. with ice chips, although this has been suspected to wash out
Hyoscine butylbromide is less sedating since it is thought to saliva that is present in the mouth. The use of articial saliva
cross the bloodbrain barrier less due to its low lipid solubility.40 may be more benecial.16
A recent study compared octreotide and scopolamine butylbro-
mide for inoperable bowel obstruction with nasogastric tubes.42 Corticosteroid Medications. Corticosteroids have been helpful
Both medications relieve colicky pain; both reduce the continu- as antiemetic medications. The recommended dose of dexam-
ous abdominal pain and distention. Although this was a small ethasone is between 6 and 16 mg/day; the prednisolone dose
study done over 3 days, they were able to remove the nasogastric starts at 50 mg/day (injection or SQ infusion).15 Twycross and
tube in three of the seven patients on the rst dose of octreotide Lack4 recommend starting with 4 mg bid for 5 days, then
0.3 mg/day subcutaneously; three more patients were able to decreasing to 4 mg daily. One possible side effect to this med-
have the nasogastric tube removed when the dose was doubled ication is oral candidiasis.37
to 0.6 mg/day. Scopolamine was similar in results, but the
Antispasmodic Medications
octreotide regimen was felt to be overall more effective. The neg-
ative effect is associated with the cost of drug; a denite consid- Colic pain results from increased peristalsis against the resis-
eration for overall quality of life. Scopolamine is less expensive. tance of a mechanical obstruction. Analgesics alone may not be
effective. Hyoscine butylbromide has been used to relieve spasm-
Analgesic Medications like pain and to reduce emesis.16 Dosing starts at 60 mg/day and
increases up to 380 mg/day given by SQ infusion.40 Side effects
Opioid medications have been used to relieve pain associated are related to the anticholinergic effects, including tachycardia,
with obstruction.15 Providing the opioid through SQ or IV dry mouth, sedation, and hypotension.40
infusion via a patient-controlled analgesic (PCA) pump is ben-
ecial for two reasons: patients may receive improved pain relief Laxative Medications
over the oral route due to improved absorption, and by giving
access to a PCA pump, patients are allowed some control over Stimulant laxatives are contraindicated due to increased peri-
their pain management. Alternative routes of opioid adminis- stalsis against an obstruction. Stool-softening medications may
tration, such as rectal or transdermal, may also be effective but be helpful if there is only a single obstruction in the colon or
usually are inadequate if the pain is severe or unstable or there rectum. If the obstruction is in the small bowel, laxatives will
are frequent episodes of breakthrough pain. not be of benet.16
Antidiarrheal Medications Portal venous thrombosis

Congestive heart failure
Patients who experience a subacute obstruction or a fecal s- Nephrotic syndrome
tula may complain of diarrhea. Antidiarrheal medicine, such Pancreatitis
as codeine or loperamide, may be helpful. The benet of these Tuberculosis
medications is that they may also help to relieve pain and colic. Hepatic venous obstruction
Octreotide may be helpful with bowel obstruction due to its Bowel perforation
mechanism of action. By inhibiting the release of certain
Severe ascites is associated with poor prognosis (40% 1-year
secretions of the gastric, biliary, and intestine, intestinal motil-
survival, less than 10% 3-year survival).44 The pathological
ity decreases and increases absorption of water and elec-
mechanisms of malignant ascites make the prevention or
trolytes.33
reduction of abdominal uid accumulation difcult.45 Inva-
Helping families cope with symptoms associated with
sive management of ascites is seen as appropriate whenever
obstruction is important. Historically, the management of
possible, in contrast to intestinal obstruction. Although sur-
obstruction involved aggressive surgical intervention or symp-
vival is limited, the effects of ascites on the patients quality of
tom management alone. The initial assessment should include:
life warrant an aggressive approach.45
(1) evaluating constipation, (2) evaluating for surgery, (3) pro-
Tumor types most associated with ascites include ovarian,
viding pain management, and (4) managing nausea with meto-
endometrial, breast, colon, gastric, and pancreatic cancers.44,45
clopramide. If incomplete obstruction, use dexamethasone,
Less common sources of ascites include mesothelioma, non-
haloperidol, dimenhydrinate, chlorpromazine, or hyoscine
Hodgkins lymphoma, prostate cancer, multiple myeloma, and
butylbromide.37 The introduction of new medications, such
melanoma.44
as octreotide, and newer antiemetics has made a difference in
the quality of life a patient with a malignant bowel obstruction
may experience. The important thing to remember is that the
treatment plan must always be in agreement with the patients o]
wishes. Discussing the patients understanding of the situation Assessment of Ascites
and the options available are essential to effective and thoughtful
care of bowel obstruction in the palliative care patient. Symptoms Associated with Ascites
Patients complain of abdominal bloating and pain. Initially,

patients complain of feeling a need for larger-waisted clothing
o]o]o] and notice an increase in belt size or weight. They may feel
ASCITES nauseated and have a decreased appetite. Many patients will
complain of increased symptoms of reux or heartburn. Pro-
Ascites associated with malignancy results from a combina-
nounced ascites can cause dyspnea and orthopnea due to
tion of impaired uid efux and increased uid inux.42 Ascites
increased pressure on the diaphragm.44,45
may be divided into three different types. Central ascites is the
result of tumor-invading hepatic parenchyma, resulting in com-
pression of the portal venous and/or the lymphatic system.44 Physical Examination
There is a decrease in oncotic pressure as a result of limited
protein intake and the catabolic state associated with cancer.44 The physical examination may reveal abdominal or inguinal
Peripheral ascites is related to deposits of tumor cells found on hernia, scrotal edema, and abdominal venous engorgement.
the surface of the parietal or visceral peritoneum. The result is Radiological ndings show a hazy picture, with distended and
a mechanical interference with venous and/or lymphatic separate loops of the bowel. There is a poor denition of the
drainage.44 There is blockage at the level of the peritoneal abdominal organs and loss of the psoas muscle shadows.
space rather than the liver parenchyma. Macrophages increase Ultrasound and computed tomographic scans may also be
capillary permeability and contribute to greater ascites. used to diagnose ascites.44
Mixed-type ascites is a combination of central and peripheral
ascites. Therefore, there is both compression of the portal
venous and lymphatic systems, as well as tumor cells in the
o]
peritoneum. Chylous malignant ascites occurs when tumor
Management of Ascites
inltration of the retroperitoneal space causes obstruction of
lymph ow through the lymph nodes and/or the pancreas.44
Traditionally, treatment of ascites is palliative due to decreased
Additional sources of ascites not related to malignancy include
prognosis.44 Ovarian cancer is one of the few types where the
the following:
presence of ascites does not necessarily correlate with a poor
Preexisting advanced liver disease with portal prognosis. In this case, survival rate can be improved through
hypertension surgical intervention and adjuvant therapy.45
Medical Therapy explanations about why an intervention is or is not recom-

mended can go a long way toward improving the quality of life
Advanced liver disease is associated with central ascites. There is for these patients.
an increase in renal sodium and water retention. Therefore,
restricting sodium intake to 100 mol/day or less along with
uid restriction for patients with moderate to severe hypona- references
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ure. Support Care Cancer 2001;9:258260. 41. Osoba D, MacDonald N. Principles governing the use of of can-
27. Aviv RI, Shyamalan G, Watkinson A, Tibballs J, Ogunbaye G. cer chemotherapy in palliative care. In: Oxford Textbook of Pal-
Radiological palliation of malignant colonic obstruction. Clin liative Medicine, Doyle D, Hanks G, MacDonald N, eds. Vol. 2.
Radiol 2002;57:347351. Oxford: Oxford University Press, 1998:249267.
28. Camunez F, Echenagusia A, Gonzalo S, Turegano F, Vazquez J, 42. Ripamont C, Mercadante S, Groff L, Zecca E, DeConno F,
Barreiro-Meiro I. Malignant colorectal obstruction treated by Casuccio A. Role of octreotide, scopolamine butylbromide, and
means of self-expanding metallic stents: effectiveness before sur- hydration in symptom control of patients with inoperable bowel
gery and in palliation. Radiology 2000;216:492497. obstruction and nasogastric tubes: a prospective randomization
29. Cello JP, Grendell JH, Basuk P, et al. Effect of octreotide on trial. J Pain Symptom Manage 2000;19:2334.
refractory AIDS-associated diarrhea: a prospective, multicenter 43. Lee CW, Bociek G, Faught W. A survey of practice in manage-
clinical trial. Ann Intern Med 1991;115:705710. ment of malignant ascites. J Pain Symptom Manage 1998;
30. Rutledge DN, Engelking C. Cancer-related diarrhea: selected 16:96101.
ndings of a national survey of oncology nurse experiences. 44. Kichian K, Bain VG. Jaundice, ascites, and hepatic encephalopa-
Oncol Nurs Forum 1998;25:861872. thy. In: Doyle D, Hanks G, Cherny N, Calman K, eds. Oxford
31. Ippoliti C, Neumann J. Octreotide in the management of diar- Textbook of Palliative Medicine, Vol 2. Oxford: Oxford Univer-
rhea induced by graft versus host disease. Oncol Nurs Forum sity Press, 2004:507520.
1998;25:873878. 45. Mercadante S, La Rosa S, Nicolosi G, Garofalo SL. Temporary
32. Mercadante S, Kargar J, Nicolosi G. Octreotide may prevent drainage of symptomatic malignant ascites by a catheter inserted
denitive intestinal obstruction. J Pain Symptom Manage 1997; under computerized tomography. J Pain Symptom Manage 1998;
13:352355. 15:374378.
33. Ripamonti C, Mercadante S. Pathophysiology and manage- 46. Abrahm J. Promoting symptom control in palliative care. Semin
ment of malignant bowel obstruction. In: Doyle D, Hanks Oncol Nurs 1998;14:95109.
GWC, Cherny N, Calman K., eds. Oxford Textbook of Pallia- 47. Runyon B. Paracentesis of ascitic uid: a safe procedure. Arch
tive Medicine, Vol. 3. New York: Oxford University Press, 2004: Intern Med 1986;146:22592261.
496507. 48. Panos M, Moore K, Vlavianos P, et al. Single, total paracentesis
34. Clarke-Pearson DL, Chin NO, DeLong ER, Rice R, Creasman for tense ascites: sequential hemodynamic changes and right
WT. Surgical management of intestinal obstruction in ovarian atrial size. Hepatology 1990;11:662667.
cancer. Gynecol Oncol 1987;26:1118. 49. Hogan CM. The nurses role with diarrhea management. Oncol
35. Turnbull ADM, Guerra J, Starnes HF. Results of surgery for Nurs Forum 1998;25:879886.
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iary origin. J Clin Oncol 1989;7:381386. Cambridge, MA: Blackwell Scientic, 1989:6980.
12o] Pamela Kedziera and Nessa Coyle
Hydration, Thirst, and Nutrition

I dont feel like pushing him any more [to eat]. Hes had a long ght and its time to rest. Its not a
failure.A dying patients wife
Key Points There is lack of consensus either in society or among experts

Advances in health care have changed the trajectory of dying and as to whether it is physically, psychologically, socially, or ethi-
the way people die. cally appropriate to provide articial hydration and nutrition
The last year of life for someone with a progressive debilitating to a terminally ill person. Do these therapies improve the way
disease is frequently associated with multiple distressing symptoms, an individual feels physically and emotionally? Do they cause
comorbidities, and loss of independent function. harm? Can an individual die comfortably without these inter-
Difculties with eating and drinking are common during ventions? Decisions are usually made on the basis of whether
this period. the intervention will make the patient more comfortable and
Decisions regarding hydration and nutrition are confronted by whether it will honor his or her wishes. These elements are
patients, families, and staff at this time. illustrated in the following two case reports.
Discussions regarding articial hydration and nutrition are
frequently couched in terms of ethics, religious beliefs, and strongly
9=
held personal views.
case study
Nurses need to know their state laws concerning provision of
Two Patients Receiving Total Parenteral Nutrition
articial hydration and nutrition in the dying patient.
Decisions regarding hydration and nutrition at end of life are Mrs. S was a 70-year-old woman with advanced uterine can-
guided by goals of care, benet versus burden, and the wishes of the cer. She was a Holocaust survivor, as was her husband. Receiv-
patient and family. ing and giving food were all-important to them both. Mrs. S
Patients have the right to refuse hydration and nutrition, whether was obstructed, had a draining percutaneous endoscopic gas-
parenteral or oral. trostomy tube, and was unable to take food by mouth. Total
parenteral nutrition (TPN), which had originally been started
as nutritional support during intensive chemotherapy, became
an expression of nurturing and life in both their minds, when
the focus of care became directed toward end-of-life care.
Although discontinuing chemotherapy had been a difcult
transition for the patient and family, to discontinue TPN was
inconceivable. This attitude continued until the end of life.
The patient continued to receive TPN up until the time of her
death. The deep-seated horror of living through the Holocaust
and the deprivation of food they had experienced strongly
affected this patient and her familys unshakeable belief that
food and water must be given until death.
A contrasting situation is illustrated through a man in his
40s, dying of gastric cancer, who had received TPN for nutri-
tional support during chemotherapy. Administration of TPN
had repeatedly been associated with increased pain. The patient
had been willing to tolerate the increased pain when the goal of
239
care was prolongation of life. After this goal was no longer pos- skin and a limited ability to take in oral uids. Hypotonic
sible, the patient associated the TPN with diminished quality of dehydration occurs when sodium loss exceeds water loss. This
life and asked that it be discontinued. typically occurs when water is consumed but food is not.
o] Overuse of diuretics is a major factor. Osmotic diuresis (e.g.,
from hyperglycemia), salt-wasting renal conditions, third
The meaning of food and water, and the meaning of dis-
spacing (ascites), and adrenal insufciency are other common
continuing food and water, need careful exploration and
causes of sodium loss.7
ongoing discussion of the benets and burden for each indi-
The methodology for assessing dehydration has not been
vidual. There are no absolutes. Nurses have reported that
well studied and tends to vary among practitioners. The clini-
patients knowingly refuse food and uids to hasten death.1
cal sensitivity of each method has not been determined. Clini-
The following pages provide basic information on hydration
cal assessment should include mental status changes, thirst,
and nutrition as a framework for the nurse when guiding a
oral/parenteral intake, urine output, and uid loss. Physical
patient and family who are considering the benets and bur-
ndings, weight loss, dry mouth, dry tongue, reduced skin tur-
dens of articial hydration and nutrition in the setting of
gor, and postural hypotension should be noted. Laboratory
advanced, progressive disease. In addition, the following ques-
test ndings, including increased hematocrit, elevated serum
tions are explored: What are the current practices with regard
sodium concentration, azotemia with a disproportionate rise
to managing hydration at the end of life, and how are these
in blood urea nitrogen in relation to creatinine, concentrated
clinical strategies justied? What problems and benets are
urine, and hyperosmolarity, are indicative of dehydration.
associated with uid and electrolyte imbalance? How is dehy-
Physical ndings (Table 121) are complicated to evaluate.7
dration clinically recognized? Should dehydration at end of
Comorbid conditions can be the cause of many of these symp-
life be treated and if so, how?
toms in the chronically or terminally ill individual. Dry mouth,
for example, can be associated with mouth breathing or anti-
cholinergic medication. Skin turgor can be hard to evaluate in
o]o]o] the cachexic individual and is unreliable. Obtaining weights
HYDRATION may be impractical, but rapid weight loss of greater than 3% is
indicative of dehydration.5 Postural hypotension can be
Water is an essential component of the human body. Complex related to medications and cardiac pathology. Confusion is
cellular functions, such as protein synthesis and metabolism of common in the patient with advanced cancer and may have
nutrients, are affected by hydration status. The maintenance of many causes, including the disease state itself. Thirst may be
hydration depends on a balance between intake and output, absent or mild in patients with hyponatremic dehydration,
which is regulated by neuroendocrine inuences. Homeostasis although marked volume loss may stimulate ADH and water
is maintained through parallel neuroendocrine activity on excre- craving.
tion of uid via the kidneys2 and on intake via thirst. Increased There is evidence that elderly individuals do not perceive
osmotic pressure is the prime stimulus for thirst, stimulating the thirst in the same manner as healthy young adults.4 In a study
release of vasopressin. Renal excretion is mainly dependent on comparing the role of thirst sensation and drinking behavior
the action of vasopressin, which is secreted by the posterior in young versus older adults, water was restricted for 24 hours.
pituitary gland. This hormone, known as antidiuretic hormone Only the young, healthy study group reported a dry, unpleas-
(ADH), increases water reabsorption in the collecting ducts of ant mouth and a general sense of thirst; the healthy elders
the kidneys.3 Thirst stimuli include hypertonicity; depletion of had a decit in the awareness of thirst despite plasma osmolar-
the extracellular uid compartment arising from vomiting, ity and sodium and vasopressin concentrations that were
diarrhea, or hemorrhage; and renal failure, in which plasma greater than those in the younger group. During the rehydration
sodium is low but plasma renin levels are high.4 period, the younger group consumed enough uid to correct
their laboratory values. Elder subjects did not consume enough
Dehydration uid to correct the laboratory values.8 There is not, however,
any evidence to support this observation in terminally ill
Dehydration is a loss of normal body water. There are several patients. In hypernatremia, thirst is a powerful stimulus, and
types of dehydration.3,5 Isotonic dehydration results from a persons with access to water usually will take in sufcient
balanced loss of water and sodium. This occurs during a com- amounts of uid. Confused or somnolent individuals and
plete fast and during episodes of vomiting and diarrhea with those who are unable to drink are at risk because water losses
the loss of water and electrolytes in the gastric contents. Billings6 may not be adequately replaced. Dehydrated, terminally ill
theorized that terminally ill individuals have this type of bal- patients usually present with mixed disorders of uid and salt
anced decrease in food and uid intake, causing eunatremic loss.
dehydration (sodium levels in normal range) because of the Dehydration causes confusion and restlessness in patients
simultaneous loss of salt and water. Hypertonic dehydration with nonterminal disease. These same symptoms are fre-
occurs if water losses are greater than sodium losses. Fever can quently reported in terminally ill persons and could be aggra-
cause this problem, by loss of water through the lungs and vated by dehydration.9 Reduced intravascular volume caused
Hydration, Thirst, and Nutrition 241
Table 121
Signs and Symptoms of Dehydration
Hyponatremic Hypernatremic Isotonic

Dehydration Dehydration Dehydration
Volume depletion Thirst Morose

Anorexia, taste alteration, Fatigue Aggression
and weight loss
Nausea and vomiting Muscle weakness Demoralized
Diminished skin turgor Mental status changes Apathetic
Dry mucous membranes Fever Uncoordinated
Reduced sweat
Orthostatic hypotension
Lethargy and restlessness
Delirium
Seizures (related to
cerebral edema)
Confusion, stupor and coma
Psychosis (rare)
Laboratory Results
Azotemia Increased sodium Minor or no
abnormalities
Disproportionate blood
urea nitrogen
compared to creatinine
Hyponatremia
Hemoconcentration
Urine osmolarity with sodium
concentration
by dehydration can result in renal failure. Opioid metabolite A study of 82 patients in the last 2 days before death showed
accumulation can result from renal failure and cause confu- no statistically signicant relationship between the level of
sion, myoclonus, and seizures.10 Dehydration has been associ- hydration, respiratory tract secretions, dry mouth, and thirst.17
ated with an increased risk of bedsores and constipation, The researchers concluded that articial hydration to alleviate
particularly in the elderly. Discomfort, especially problems symptoms may be futile. These results contrast with those of a
with xerostomia and thirst, may result from dehydration.11 study of 100 palliative care patients receiving hypodermo-
Dehydration may improve physical caregiving for some clysis; researchers in the latter investigation concluded that
patients. For example, urinary catheters may be avoided if the this therapy was useful for achieving better symptom con-
frequency of urination decreases. With dehydration, there is trol.18 An anecdotal study of three patients being hydrated by
less gastrointestinal uid, with fewer bouts of vomiting, and a hypodermoclysis reported that hydration may have contributed
reduction in pulmonary secretions, with less coughing, chok- to improved cognitive function and allowed patients to deal
ing, and need for suctioning. Some palliative care clinicians with end-of-life issues.19
suggest that dehydration at the end of life causes suffering in Some experts suggest that hydration may relieve symptoms
some patients, which should be relieved. This suffering may other than thirst, such as confusion and restlessness.14 Still
include thirst, dry mouth, fatigue, nausea, vomiting, confu- others who have looked at the issue of dehydration-related
sion, muscle cramps, and perhaps the hastening of death.12,13 suffering have stressed the role of inappropriate medical inter-
Dehydration as a cause of renal failure has been well docu- ventions that cause their own problems. They contend that
mented.14,15 A study of terminally ill cancer patients, however, hydrating a patient can be associated with repetitive needle-
showed that the group receiving intravenous uids at a rate of sticks, decreased mobility, increased secretions, increased
1 to 2 L/day consistently had more abnormal laboratory values edema, and possibly congestive heart failure.20,21 It is also sug-
of serum sodium, urea, and osmolarity than the group who gested that improving the cognition of a dying patient with
were not hydrated.16 pain may make the patient more aware of the pain, with the
possiblity of decreasing cognition once more through increased well-being of the caregivers. Those who are very weak,
opioid requirements. Others state that comatose patients feel depressed, confused, agitated, or demented may need signi-
no symptoms; uids may prolong dying, and dehydration may cant assistance in getting the uids in on a regular basis.
act as an anesthetic.14 The benet/burden ratio for the patient in aggressively
In a descriptive study of symptoms of dehydration in the pursuing such a uid intake approach must be carefully
terminally ill, no association was found between uid intake, weighed. Care must be taken to avoid overhydration by a well-
serum sodium, osmolality, blood urea nitrogen, and symptom meaning but misdirected aggressive approach, and the patient
severity.12 A survey of Swiss physicians found that there was no should be monitored for new orthopnea, shortness of breath,
consensus with respect to the assessment of suffering from increased emotional distress, or change in mental status. If the
dehydration or thirst. The physicians who chose articial ability to swallow is diminished, there is a risk of aspiration
hydration were more likely to perceive suffering and thirst as and causing more distress to the patient. Small, frequent sips
serious problems. Two thirds of the doctors did not believe of uid or ice chips can be provided. Choice of uids should
that articial hydration was the best way to respond to termi- be patient driven. Some individuals nd sports replacement
nal dehydration.22 uids a good choice because they are easily absorbed by the
The decision to use articial means of hydration comes stomach and can correct hypertonic dehydration.5 Use of a
more from tradition than from science. To avoid unnecessary ne mist spray can also help to keep mucous membranes
interventions in the course of the dying process, some practi- moist.23 Hot, humid weather conditions can add to the risk of
tioners have avoided articial uid replacement secondary to dehydration, so the use of air conditioning and fans should be
its perceived negative effects. Their conclusion, that articial considered.
hydration may cause harm to some dying patients, keeps them
from offering this therapy. Palliative care clinicians have noted Alternative Routes of Hydration When
that some individuals are more comfortable without articial the Oral Route Is No Longer Reliable
uids, which may prolong the dying process, whereas others
are more comfortable when articial hydration is used. Emo- If there are days or weeks of life expected, and if it is appropri-
tional issues are often the driving force in the decision to ate to the goals of care and wishes of the patient and family, a
provide or withdraw articial hydration. The need to provide more reliable route of uid replacement may be chosen. Rehy-
fluids may be directed by very strong cultural, religious, and/or dration by proctoclysis is relatively risk-free and less expensive
moral convictions on the part of patients, families, and some than parenteral means of administration.24 Through a naso-
caregivers even if there is no certainty that the therapy does gastric tube placed rectally, tap water or saline is instilled, start-
provide comfort. ing at about 100 mL/h. If there is no discomfort, leakage, or
tenesmus (spasm of the anal sphincter), the rate can be
Screening for Dehydration, Management, increased to 400 mL/h. One liter of uid can be instilled over 6
and Assessing the Effects of Interventions to 8 hours. Care must be taken, however, not to overhydrate.
Side effects of this route of hydration can include pain, edema,
Screening for dehydration in the palliative care setting may rectal leakage of uid, and pain during insertion of the tube.
include recording intake and output, examining skin turgor Researchers report that although proctoclysis is effective, safe,
and mucous membranes, and monitoring mental status and and economical, most patients prefer hypodermoclysis.24 It is
blood pressure. Subjective reports of fatigue, muscle weakness, possible to foresee cultural and social reluctance to accept the
anorexia, and taste alteration are correlated with these signs rectal mode of uid administration. In an inpatient setting,
and laboratory values (see Table 121). The benets and possi- clinical staff would administer the uids, but in a home setting,
ble adverse effects of hydration should be discussed within a it may be impractical to use professional staff daily for this
broad framework of goals of care and the wishes of the patient treatment. Family caregivers or patients may be uncomfortable
and family explored within that framework. Each situation has with relatives or friends having to assume this type of care.
unique aspects that affect choices and the outcome of therapy. Standard methods for replacement of uids can be achieved
Finally, there is a need for regular reassessment to allow for by the use of enteral feeding tubes and by parenteral methods,
changes in therapy and frequent discussions with patients and such as subcutaneously (hypodermoclysis) or intravenously. A
families to provide opportunities to reevaluate decisions. feeding tube placed through the nose is often uncomfortable
The treatment of dehydration starts with a review of med- and may agitate the confused individual. Patients often extu-
ications and elimination, if possible, of any agents (diuretics) bate themselves when agitated. Endoscopic gastrostomy tubes
that may be contributing to the dehydration. Mouth care should have become more popular but are usually placed for decom-
be provided regularly. Intervening or treating dehydration may pression or feeding rather than for uid replacement. If the
include various routes of administration. A standard goal for individual has a feeding tube or a permanent intravenous
fluid intake is 1500 to 3000 mL, or 8 to 10 glasses, of water daily.7 access device (port or peripherally inserted central catheter),
The least invasive approach to replacing uids is to offer liquid these may be used safely without any added burden for the
orally at regular intervals. For those able to swallow, this patient. Placement of these devices, however, needs to be con-
approach can help the patient as well as promote the emotional sidered in the context of the overall goals of therapy.
Table 122
Potential Complications of Routes for Articial Hydration
IV Peripheral IV Central SC Hypodermoclysis
Pain Sepsis Pain

Short duration of access Hemothorax Infection
Infection Pneumothorax Third spacing
Phlebitis Central vein thrombosis Tissue sloughing
Catheter fragment thrombosis Local bleeding
Air embolus
Brachial plexus injury
Arterial laceration
IV, intravenous; SC, subcutaneous
Hypodermoclysis (subcutaneous uid administration) does Replacement of uids by the intravenous route is more
not require special access devices. This method has the advan- technically complicated, and access to a competent vein must
tage over the intravenous route in people who have poor venous be available. Some patients have permanent-access devices,
access. Use of this method may prevent transfer to an acute set- placed for therapy earlier in their treatment, that are more
ting for line placement. Hypodermoclysis can also be initiated than adequate for this type of administration. Others may
in the patients home. It does not require monitoring for clot- wish to have a device placed. Use of a regular intravenous line
ting in the line, and there is no fear of letting the line run dry. for ongoing hydration at home can be hard to maintain; if
There can be local irritation at the site of infusion, however, as ongoing parenteral uids are required, placement of a central
well as minor bleeding. Sloughing of tissue is possible with over- catheter or peripherally inserted central catheter (PICC) line is
infusion, and abscess formation may occur (Table 122). Hypo- the norm in these situations. Small, portable pumps to regu-
tonic or isotonic solutions, with or without hyaluronidase or late uid ow are available for hydration of a patient in the
corticosteroids, are administered through needles inserted into inpatient or home setting. Some individuals choose to run u-
the subcutaneous tissue of the abdomen or anterior or lateral ids via the permanent-access devices only at night. This allows
thigh. Most individuals can tolerate 100 mL/h or more. Up to for more mobility during the daylight hours. There needs to be
1500 mL can be administered into a single site.8,25 The following a competent caregiver to monitor the therapy, and because
case report illustrates the use of hypodermoclysis. caregivers accept many duties, this can be overwhelming to
some.
Consensus on the appropriate volume or type of fluid
9=
replacement does not exist. Clinicians make choices based on
case study
their previous experience and knowledge of the patients
Mr. G, a 55-Year-Old Man with Colon Cancer
condition and wishes. Some practitioners allow the individ-
Mr. G was a 55-year-old man with advanced colon cancer. He ual to have 1 L/day despite the fact that it is inadequate
was obstructed and unable to take oral food or water. His replacement. Considerations also include safety and reality
goal was to remain alert and interactive with his wife and of the care burden on all caregivers. Providing 1 L of fluid per
children for as long as possible. Enteral feedings were not fea- day may only partially correct the patients deficits, but it
sible, and venous access for uids was complicated by recur- may relieve the emotional burden of needing to provide flu-
rent port and line infections. Maintaining hydration, ids. Administration of 1 L/day can often be worked into the
however, was felt to be important for achieving the patients patients and familys schedule better. If fluids are given only
goals. Because of the complications associated with his at night, the patient may be more mobile during the day.
venous access, hypodermoclysis was chosen as the most Fluid administration can be scheduled to accommodate the
appropriate route for uid administration. Subcutaneous u- goals of living. More aggressive fluid replacement requires
ids at 100 mL/h were continued for the last 4 months of his monitoring of serum electrolytes and blood counts by regu-
life. This subcutaneous access also provided a parenteral lar laboratory testing. This type of approach requires moni-
route for opioid administration. Mr. G remained alert and toring of laboratory results and making adjustments every 24
interactive up until the last day of life. In this case, hypoder- to 48 hours.
moclysis appeared to have been an appropriate use of tech- Patients and family members can be taught to manage
nology and hydration in end-of-life care. hydration techniques at home. An assessment of their concerns
o] should precede the instruction about the actual procedures.
Adequate time must be allowed for education and return Whether or Not to Provide Articial
demonstration. Backup support should be provided, and Hydration at End of Life
repetitive sessions may be required. If possible, direct instruc-
tion to more than one caregiver should be provided, to allow Controversy about providing hydration for terminally ill indi-
them to help each other with the tasks required. Printed mate- viduals stems from trying to balance the medical tradition of
rials that are age and reading level appropriate should be given. doing everything possible to heal and prolong life with the
In addition, video instructions can be helpful, if they are avail- idea of allowing patients to die comfortably without unneces-
able. Follow-up visits or calls should be scheduled to assess sary interventions. Empirical studies of clinical practice sug-
level of functioning, to give support, and to reinforce teaching. gest that the setting of end-of-life care inuences the use of
These therapies may mean more home visits, to accommodate artical hydration at the end of life. Patients are more likely to
those who learn more slowly or are not able to master all or receieve hydration if they are cared for in an acute care setting
part of the procedure. Specic protocols vary among institu- and are less likely to receive hydration if they are cared for in a
tions and agencies; however, written policies and procedures hospice program.2630
should guide practice. What is the role of medical intervention at the nal stage
of illness? In conventional medical management, dehydration
Dry Mouth and Thirst is routinely avoided or reversed with uid and electrolyte
replacement. Similarly, whenever a terminal ill patient seeks
Other symptoms related to dehydration can be assessed and to prolong life, and if the goal of care is to prolong life, main-
treated. Thirst can be relieved by small amounts of uid taining hydration is accepted medical management. Con-
offered frequently. Dry mouth is treated with an intensive versely, if a terminally ill patient does not wish to delay death
every-2-hour schedule of mouth care, including hygiene, lip or even seeks to hasten dying, uid replacement is generally
lubrication, and ice chips or popsicles. Elimination of med- inappropriate. Table 123 outlines the principles of ethical
ications that cause dry mouth, such as tricyclic antidepres- decision-making in regard to articial hydration and nutri-
sants and antihistamines, should be considered. Usually, tion in the terminally ill. Table 124 illustrates four clinical
however, the drugs that contribute to these symptoms are scenarios or paradigm cases that the nurse may encounter
being administered to palliate other symptoms. Mouth while caring for the terminally ill and that inuence clinical
breathing can also cause dry mouth. Candida infection, a fre- decision-making.
quent cause of dry mouth in the debilitated individual, can be Dehydration may aggravate or alleviate the discomfort of
treated. Agents such as pilocarpine (Salagen) can be used to terminal disease (Table 125).6 Current research does not clearly
increase salivation. guide practice. Dehydration causes unpleasant symptoms, such
Table 124
Nutrition and Hydration at the End of Life: Four
Paradigm Cases
Table 123
Paradigm case 1
Hydration and Nutrition in the Terminally Ill: Guiding
Principles of Ethical Decision Making The dying patient who becomes too weak or too obtunded to
maintain normal uid intake, who will die soon but may die
Everything in the terminal phase of an irreversible illness less comfortably and perhaps more quickly without
should be decided on the basis of whether it will make the rehydration.
patient more comfortable and whether it will honor his or
her wishes. Paradigm case 2
Treatments are evaluated principally according to their The terminally ill cancer patient who has an inoperable
consequencesbenets and burdens, physical, intestinal obstruction, feels hungry, and wants to be fed.
psychosocial, and spiritualweighed within the patients
Paradigm case 3
value framework.
The terminally ill patient whose inability to take oral food or
Dehydration per se does not require treatment, but
uid is precipitated by, or partially the result of, palliative
symptoms associated with dehydration do require
medical management; for example, the patient who is sedated
palliation.
in an attempt to manage a refractory symptom such as pain,
When a patient is unable to express his or her wishes, dyspnea, or agitated delirium.
advance directives or input from the health care proxy is
followed. Paradigm case 4
Although the focus is the patient, attention to the concerns The dying patient who voluntarily stops eating and drinking
and distress of the family is essential. in order to hasten death.
Table 125
Hydration and Rehydration at the End of Life: Potential Effects
Body System Effects of Dehydration Effects of Rehydration

General appearance Sunken eyes Improved appearance
Mouth Decreased saliva Oral comfort
Thirst Relief of thirst
Bad taste Improved taste
Dry, cracked lips
Pulmonary Dry airway, viscous secretions Facilitates productive cough
Reduced death rattle Easier suctioning
Reduced secretions, cough
Reduced congestion, wheezing,
dyspnea, pleural effusions
Gastrointestinal tract Constipation More normal bowel function
Decreased secretions
Less vomiting, diarrhea
Anorexia
Reduced ascites Ascites
Urinary tract Reduced renal function Improved renal drug clearance
Edema Reduced toxic metabolites
Possible drug accumulation May need more drug
administration
Source: Billings (1998), reference 6.
as confusion and restlessness, in nonterminally ill patients. psychological, and social concerns but also individual ethical
These problems are common in the dying. Dehydration can dilemmas.
cause renal failure with an accompanying accumulation of opi-
oid metabolites, which causes further symptoms, such as
myoclonus and even seizures. Dehydration is also associated o]o]o]
with constipation and increased risk of bedsores. Clinicians NUTRITION
report that these symptoms are mild and easily treated without
hydration and that some symptoms, such as increased secre- To observe an anorexic, fatigued, wasted, and debilitated patient
tions, are actually made worse by rehydration.6,12,20 Hospice is disheartening for the family. Food is more than nutrition; it
nurses have reported that the dehydrated patient is not uncom- plays an important role in maintaining hope. For those who are
fortable.31,32 There is concern that articial hydration dimin- able to enjoy eating, every opportunity to offer nourishment
ishes quality of life by adding tubes, which create a physical should be taken. However, attempts at aggressive nutritional
barrier that separates the terminally ill from their loved ones. intervention for someone who is unable to eat may end up being
There is often fear that hydration unnecessarily prolongs dying. frustrating for the family and add to the patients suffering.34
Patients and families may be making decisions based on inade- Malnutrition is a common problem in patients with
quate knowledge or misconceptions about articial hydration, chronic, advanced debilitating illnesses such as acquired
such as the idea that it is helpful at any stage of disease or that it immunodeciency syndrome (AIDS) or cancer. Anorexia, a
can increase strength.33 loss of appetite, occurs in most patients during the last weeks
Those clinicians who support the use of hydration point of life. Cancer cachexia is a complex syndrome characterized
to the prevention or relief of some symptoms, such as delir- by loss of appetite, generalized tissue wasting, skeletal muscle
ium.13,16 Because food and uids are viewed by many as a sym- atrophy, immune dysfunction, and a variety of metabolic
bol of life, not to maintain uids or to withdraw articial alterations.35,36 It is likely that asthenia, mental and physical
hydration at the end of life may cause spiritual or emotional fatigue coupled with generalized weakness, is directly related
conict. These issues are complex and involve not only physical, to malnutrition.3739
Administration of nutrition in the terminally ill is some- cytokines such as interleukin-1 and tumor necrosis factor,
times proposed as a medical intervention for nutrition-related released from tumors, may mediate anorexia and decrease gas-
symptoms or management of side effects such as weight loss, tric emptying.46
weakness, constipation, pressure sores, intestinal obstruction, The patient with advanced chronic illness may have
and dehydration. Nutritional intervention is also recommended increased caloric needs due to changes in metabolism. The basal
to prevent further morbidity and maintain to quality of life by metabolic rate can be increased by infection or malignancy. Age,
controlling blood sugars or electrolyte imbalance. Lastly, nutri- nutritional status, temperature, hormones, and trauma can
tional therapy is offered to provide enough dietary intake to also change the metabolic rate. Unlike healthy persons, these
maintain energy. patients have no adaptation to a decrease in food intake; metab-
Enteral and parenteral feedings are, however, interventions olism does not slow down. Cytokines increase resting energy
with the potential for associated morbidity and increased suf- expenditure and skeletal muscle wasting.46 Nutrients that help
fering (Table 126). The American Medical Directors Associa- to maintain immune function are decreased, and the resulting
tion (AMDA), a group that represents nursing home physicians, immunosuppression increases the risk of infection. Tumors
has published a white paper including a section that cautions invading the esophagus, stomach, or bowel can cause compres-
against tube feeding in patients with advanced dementia unless sion or obstruction and may limit oral intake. Surgery to
they have clearly indicated their desire for such treatment. This remove tumors can remove all or part of the organs that pro-
group believes that there is no advantage to tube feeding and duce digestive enzymes. This results in incomplete digestion. A
that less time is spent and fewer complications are encountered shortened intestine reduces the number of villi available for
with hand feeding.40 Until the literature is conclusive, the clini- absorption of nutrients.44
cian must stay current with the research in this area.41
Anorexia is inuenced by alterations in taste, alterations in Nutritional Assessment
the gastrointestinal system, changes in metabolism, and effects
of the tumor itself. In addition, psychological factors such as Within the framework of goals of care, disease status, and
depression or anxiety can change eating habits. Pain, fatigue, closeness to death, nutritional assessment starts with a diet his-
and nausea may also decrease the desire for oral intake. Many tory. The history should include the individuals usual dietary
aspects of the cancer experience decrease caloric intake. Taste habits, current eating habits, and disease symptoms. Food
changes may result from the tumor itself or from various preferences and aversions should be explored, as well as family
treatments such as chemotherapy, surgery, radiation, or support and the ability to obtain and prepare foods. The edu-
antibiotics.42 These taste changes may in turn decrease diges- cational needs of the patient and of caregivers should also be
tive enzymes and delay digestion.43 The gastrointestinal tract assessed. A food diary may be helpful in this situation, and
may be altered by tumor, opportunistic infections such as dietitians recommend a 72-hour history followed by weekly
Candida, or ulcerations resulting from chemotherapy or radia- documentation. A physical examination to screen for changes
tion that cause diarrhea. These alterations can interfere with in oral mucosa and dentition should be performed.
ingestion, digestion, and absorption. Nausea and vomiting may Anthropometric measurements are part of nutritional
ensue. Abnormalities in glucose metabolism, increases in circu- assessment. These are often limited in scope at the end stages of
lating amino acids or lactic acid, and increases in free fatty acids disease. A history of weight loss of 20% or greater is indicative
can cause early satiety.44 Increased blood sugar and serotonin of increased morbidity and mortality.47 In the patient with
levels in the brain may also decrease appetite.45 In addition, advanced disease, weight gain may indicate the presence of
Table 126
Potential Complications of Enteral Support
Complication Symptom Cause
Aspiration Coughing Excess residual

Fever Large-bore tube
Diarrhea Watery stool Hyperosmotic solution
Rapid infusion
Lactose intolerance
Constipation Hard, infrequent stools Inadequate uid
Inadequate ber
Dumping syndrome Dizziness High volume
Hyperosmotic uids
edema or ascites, and weight loss may indicate dehydration. inuenced by race, gender, and culture.51 The rites of family
Other anthropometric measurements, such as skinfold thick- meals and celebrations provide bonding and sharing as well
ness and midarm circumference, assess muscle and fat stores as foodfundamental components of personal and social
and can be used to monitor progress. Laboratory values are also life. The issues of hydration and nutrition at the end of life are
used to estimate protein stores. These biochemical measure- complex and require a thoughtful, individualized approach.52
ments are the mainstay for determining TPN. The appropriate- Nurses and physicians are guided to institute or withdraw
ness of each of these assessment parameters is determined on a articial nutrition or hydration based on the ethical princi-
case-by-case basis in the terminally ill. ples of autonomy, benecience and nonmalecience.53,54 Pro-
Nutritional therapy is aimed at improving intake and man- vision of accurate and complete information by the nurse
aging cachexia. Increasing appetite is sometimes possible with can inuence a patients and familys decisions about these
pharmacological therapy. Steroids have been known to increase matters.
appetite, but their long-term use can cause muscle weakness.
High-dose megastrol acetate has been shown to increase
appetite with subsequent weight gain.48,49 Hydrazine sulfate did references
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13o] Deborah Dudgeon
Dyspnea, Death Rattle, and Cough

Air! I need air! I cant breath . . . Im going to die!A patient
Can you help her? It sounds like shes choking to death!A family member
Im worn out from coughing!A patient
Key Points o]o]o]

Dyspnea is a subjective experience. DYSPNEA
Tachypnea is not dyspnea.
Patients can be very frightened when breathless. Dyspnea is a very common symptom in people with advanced
Nursing and medical interventions are helpful for patients disease and can severely impair their quality of life. The pres-
with dyspnea. ence of dyspnea correlates with the probability of dying in
Death rattle is common in dying patients. hospital.1 In one international study, dyspnea prompted the
Death rattle is very distressing for people at the bedside. use of terminal sedation in 25% to 53% of patients.2 Manage-
Family members need to receive good teaching and reassurance ment of breathlessness requires understanding and assessment
about death rattle. of the multidimensional components of the symptom, knowl-
Anticholinergics are the drugs of choice for death rattle. edge of the pathophysiological mechanisms and clinical syn-
Chronic cough can be very debilitating. dromes that are common in people with advanced disease, and
Massive hemoptysis is very frightening and needs to be anticipated. knowledge of the indications and limitations of the available
Pharmacological and nonpharmacological interventions can help therapeutic approaches.
patients with chronic cough.
Denition
The American Thoracic Society has dened dyspnea as the

term used to characterize a subjective experience of breathing
discomfort that consists of qualitatively distinct sensations
that vary in intensity.3 Dyspnea, like pain, is multidimen-
sional in nature, with not only physical elements but also
affective components, which are shaped by previous experi-
ence.4,5 The neuropathways responsible for the sensation of
dyspnea are poorly understood,6 and no simple physiological
mechanism or unique peripheral site can explain the varied
circumstances that lead to the perception of breathlessness.4,7
Stimulation of a number of different receptors (Figure 131)
and the conscious perception this stimulation invokes can
alter ventilation and result in a sensation of breathlessness.
The prevalence of the dyspnea varies according to the stage and

type of underlying disease. Approximately 50% of a general out-
patient cancer population describe some breathlessness,8 with
this number rising to as much as 70% in the terminal phases of
249
BIOCHEMICAL
Central Peripheral
PSYCHOGENIC pH pH
pCO2 pCO2
pO2
MEDULLA
&
PONS
MECHANICAL
VASCULAR Muscle spindles,
Baroreceptors irritant, stretch, J receptors,
& Golgi tendon organs,
Mechanoreceptors thermal receptors,
trigeminal nerves
Motor Control
Figure 131. Schematic diagram of the neu- Voluntary, Involuntary
roanatomic elements involved in the control of ven-
tilation. Source: Dudgeon & Rosenthal (2000),
reference 169. Chest Wall Diaphragm
the disease.914 The prevalence of dyspnea is even more com- had socially isolated themselves from friends and outside
mon in patients with lung cancer; almost 90% of them com- contacts to cope with their dyspnea. Studies in patients with
plain of breathlessness just before death.15 In a study of COPD, CVA, or end-stage heart or neurological diseases have
patients with end-stage chronic obstructive pulmonary dis- also demonstrated the presence of significant dyspnea and
ease (COPD), extreme breathlessness was experienced by 95% other symptoms, functional disability, and impaired quality
of the participants and was the most distressing and debilitat- of life in the last year of their lives.1619,22
ing symptom.16 Dyspnea is also quite prevalent in the last year Patients with advanced disease typically experience chronic
of life of people with congestive heart failure (CHF): 61% of shortness of breath with intermittent acute episodes.21,23 Acute
these patients experience dyspnea, 72% of them having dysp- attacks of breathlessness are usually accompanied by feelings
nea for 6 months.17 Likewise, dyspnea occurs in 37% of of anxiety, fear, panic, and, if severe enough, a sensation of
patients with cerebrovascular accident (of whom 57% were impending death.23 Patients and family members who were
breathless for >6 months)18; in 47% to 50% of patients with participants in a qualitative study using narrative analysis
amyotrophic lateral sclerosis (ALS); and in 70% of those with consistently expressed fear of dying during a future acute
dementia.19 episode of breathlessness, or of watching helplessly as a loved
In a study of late-stage cancer patients, Roberts and asso- one became increasingly breathless and died before receiving
ciates20 used patient self-report surveys, chart audits of any help.24 Many dying persons are terried of waking in the
patients under the care of a hospice program, and interviews middle of the night with intense air hunger.25 They need
of patients and nurses in a home-care hospice program to providers who will anticipate their fears and provide sympto-
examine the occurrence of dyspnea during the last weeks of matic relief of their breathlessness and anxiety as they
life. They found that 62% of the patients with dyspnea had approach death.24,25
been short of breath for > 3 months. Various activities inten-
sified dyspnea for these patients: climbing stairs, 95.6%; Pathophysiology
walking slowly, 47.8%; getting dressed, 52.2%; talking or eat-
ing, 56.5%; and at rest, 26.1%. The patients universally Management of dyspnea of patients requires an understanding
responded by decreasing their activity to whatever degree of its multidimensional nature and the pathophysiologic
would relieve their shortness of breath. Most of the patients mechanisms that cause this distressing symptom. Exertional
had received no direct medical or nursing assistance with dyspnea in cardiopulmonary disease (Table 131) is caused by
their dyspnea, leaving them to cope in isolation. Brown (1) increased ventilatory demand, (2) impaired mechanical
and colleagues21 found that 97% of lung cancer patients stud- responses, or (3) a combination of the two.26 The effects of
ied had decreased their activities, and 80% believed they abnormalities of these mechanisms can also be additive.
Dyspnea, Death Rattle, and Cough 251
Impaired Mechanical Response/Ventilatory

Table 131
Pump Impairment
Pathophysiological Mechanisms of Dyspnea
Increased ventilatory demand Impaired mechanical responses result in restrictive ventila-

Increased physiological dead space tory decits due to inspiratory muscle weakness,27 pleural or
parenchymal disease, or reduced chest wall compliance; air-
Thromboemboli
way obstruction from coexistent asthma or COPD, or tumor
Tumor emboli
obstruction. Patients may also have a mixed obstructive and
Vascular obstruction restrictive disorder.
Radiation therapy
Chemotherapy Multidimensional Assessment of Dyspnea
Emphysema
Dyspnea, like pain, is a subjective experience that may not be
Severe deconditioning
evident to an observer. Tachypnea, a rapid respiratory rate, is
Hypoxemia
not dyspnea. Medical personnel must learn to ask and accept
Change in Vco2 or arterial Pco2 set point the patients assessments, often without measurable physical cor-
Psychological: anxiety, depression relates. If patients say they are having discomfort with breathing,
Increased neural reex activity we must believe that they are dyspneic.
To determine whether dyspnea is present, it is important to
Impaired mechanical response/ventilatory pump ask more than the question, Are you short of breath? Patients
impairment
often respond in the negative to this simple question because
Restrictive ventilatory decit they have limited their activities so they wont become short of
Respiratory muscle weakness breath. It is therefore helpful to ask about shortness of breath
Cachexia in relationship to activities: Do you get short of breath walk-
Electrolyte imbalances ing at the same speed as someone of your age? Do you have
to stop to catch your breath when walking upstairs? Do you
Peripheral muscle weakness
get short of breath when you are eating?
Neuromuscular abnormalities
Neurohumoral
Qualitative Aspects of Dyspnea
Steroids
Pleural or parenchymal disease Dyspnea is not a single sensation. Recent work suggests that
Reduced chest wall compliance the sensation of breathlessness encompasses several qualities.7
Just as the descriptions burning or numb suggest neuro-
Obstructive ventilatory decit
pathic pain, phrases such as chest tightness,exhalation, and
Asthma
deep were among a cluster of words associated with asthma.7
Chronic obstructive pulmonary disease It is possible that dyspnea mediated by similar receptors evokes
Tumor obstruction common word descriptors. From the research to date, it is not
Mixed obstructive/restrictive disorder (any combination of known whether qualitative assessments of dyspnea in breath-
the above) less patients permit any discrimination among the various
cardiopulmonary disorders. ODonnell and coworkers2830
Pco2, partial pressure of carbon dioxide; Vco2, carbon dioxide output. found that, although descriptor choices were clearly different
between health and disease states, they provided no discrimi-
nation among various diseases (e.g., COPD, restrictive lung
Increased Ventilatory Demand disease, and CHF). Others have suggested that changes in the
quality of dyspnea may prompt patients with heart failure to
Ventilatory demand is increased because of increased physio- go to the emergency department.31
logical dead space resulting from reduction in the vascular bed
(from thromboemboli, tumor emboli, vascular obstruction, Clinical Assessment
radiation, chemotherapy toxicity, or concomitant emphy-
sema); hypoxemia and severe deconditioning with early meta- Clinical assessments are usually directed at determining the
bolic acidosis (with excessive hydrogen ion stimulation); underlying pathophysiology, to decide appropriate treatment,
alterations in carbon dioxide output (Vco2) or in the arterial and at evaluating the response to therapy.
partial pressure of carbon dioxide (Pco2) set point; and non- The clinical assessment of dyspnea should include a com-
metabolic sources, such as increased neural reex activity, or plete history of the symptom, including its temporal onset
psychological factors such as anxiety and depression. (acute or chronic), whether it is affected by positioning, its
qualities, associated symptoms, precipitation and relieving The modied Borg scale is a scale with nonlinear spacing of
events or activities, and response to medications. A past verbal descriptors of severity of breathlessness.37 Patients are
history of smoking, underlying lung or cardiac disease, con- asked to pick the verbal descriptor that best describes their
current medical conditions, allergy history, and details of pre- perceived exertion during exercise. It is usually used in con-
vious medications or treatments should be elicited.32,33 junction with an exercise protocol with standardized power
Careful physical examination focused on possible underly- output or metabolic loads. When used in this manner, the
ing causes of dyspnea should be performed. Particular atten- slope of the Borg descriptors over time is very reproducible
tion should be directed at signs associated with certain clinical and reliable, permitting comparisons within individuals and
syndromes that are common causes of dyspnea. Examples are across population groups.38,39
the dullness to percussion, decreased tactile fremitus, and The Reading Numbers Aloud test was designed as an objec-
absent breath sounds associated with a pleural effusion in a tive measure of the activity-limiting effect of breathlessness in
person with lung cancer; an elevated jugular venous pressure people with cancer who were breathless at very low levels of
(JVP), audible third heart sound (S3), and bilateral crackles exertion.40,41 The test involves asking subjects to read a grid of
audible on chest examination associated with CHF; and ele- numbers as quickly and clearly as possible for 60 seconds. The
vated JVP, distant heart sounds, and pulsus paradoxus in peo- number of numbers read and the number read per breath are
ple with pericardial effusions.32,33 recorded.
Gift and colleagues34 studied the physiological factors
related to dyspnea in subjects with COPD and high, medium, Dyspnea and Psychological Factors
and low levels of breathlessness. There were no signicant dif-
ferences in respiratory rate, depth of respiration, or peak expi- The persons perception of the intensity of his or her breathless-
ratory ow rates at the three levels of dyspnea. There was, ness is also affected by psychological factors. Anxious, obsessive,
however, a signicant difference in the use of accessory mus- depressed and dependent persons appear to experience dyspnea
cles between patients with high and low levels of dyspnea, sug- that is disproportionately severe relative to the extent of their
gesting that this is a physical nding that reects the intensity pulmonary disease.4 Gift and colleagues34 found that anxiety
of dyspnea. was higher during episodes of high or medium levels of dysp-
Diagnostic tests helpful in determining the cause of dyspnea, compared with low levels of dyspnea. Kellner and associ-
nea include chest radiography; electrocardiography; pul- ates42 found in multiple regression analyses that depression was
monary function tests; arterial blood gases; complete blood predictive of breathlessness. Studies in cancer patients by Dud-
counts; serum potassium, magnesium, and phosphate levels; geon and Lertzman27,43 and others8,14,44 have also shown that
cardiopulmonary exercise testing; and tests specic for sus- anxiety is signicantly correlated with the intensity of dyspnea
pected underlying pathologies, such as an echocardiogram for (r = 0.3) but explains only 9% of the variance in the intensity of
suspected pericardial effusion.32 The choice of appropriate breathlessness. These studies were done in people with chronic
diagnostic tests should be guided by the stage of disease, the dyspnea and when the person was at rest. Carrieri-Kohlman and
prognosis, the risk/benet ratios of any proposed tests or colleagues45 found higher correlations between dyspnea inten-
interventions, and the desires of the patient and family. sity and anxiety associated with dyspnea at the end of exercise
Nguyen and colleagues35 found that the ratings of intensity (r = 0.49). It is also probable that anxiety is a more prominent
of dyspnea during laboratory exercise, clinical measures of factor during episodes of acute shortness of breath.
dyspnea such as the Oxygen Cost Diagram, and pulmonary
function tests captured distinctly different information in Management
patients with moderate to severe COPD. It is therefore not sur-
prising that results of pulmonary function tests do not neces- The optimal treatment of dyspnea is to treat reversible causes.
sarily reect the intensity of a persons dyspnea. Individuals If this is no longer possible, then both nonpharmacological
with comparable degrees of functional lung impairment may and pharmacological methods are used (Table 132).
also experience considerable differences in the intensity of
dyspnea they perceive.4 Factors such as adaptation, differing Pharmacological Interventions
physical characteristics, and psychological conditions can
modulate both the quality and the intensity of the persons Opioids. Since the late 19th century, opioids have been used to
perception of breathlessness. relieve breathlessness of patients with asthma, pneumothorax,
The Visual Analog Scale (VAS) is one of the most popular and emphysema.46 Although most trials have demonstrated
techniques for measuring the perceived intensity of dyspnea. the benet of opioids for the treatment of dyspnea,4656 some
This scale is usually a 100-mm vertical or horizontal line, an- have been negative5760 or have produced undesirable side
chored at each end by words such as Not at all breathless and effects.49,57
Very breathless. Subjects are asked to mark the line at the point In 2001, a systemic review examined the effectiveness of
that best describes the intensity of their breathlessness. The scales oral or injectable opioid drugs for the palliative treatment of
can be used as an initial assessment, to monitor progress, and to breathlessness.61 The authors identied 18 randomized, double-
evaluate effectiveness of treatment in an individual patient.36 blind, controlled trials comparing the use of any opioid drug
Sedatives and Tranquilizers. Chlorpromazine decreases breath-

Table 132 lessness without affecting ventilation or producing sedation in
Management of Dyspnea
healthy subjects.80 Woodcock and colleagues81 found that
Sit upright supported by pillows or leaning on overbed table promethazine reduced dyspnea and improved exercise toler-
Fan oxygen ance of patients with severe COPD. ONeill and associates80
did not nd that promethazine improved breathlessness in
Relaxation techniques and other appropriate non-
pharmacological measures healthy people, nor did Rice and coworkers57 nd that it bene-
fited patients with stable COPD. McIver and colleagues82 found
Identify and treat underlying diagnosis (if appropriate)
that chlorpromazine was effective for relief of dyspnea in
Pharmacologic Management advanced cancer.
Chronic The results of clinical trials to determine the effectiveness of
Opioids anxiolytics for the treatment of breathlessness have also been
Add phenothiazine (chlorpromazine, promethazine) quite variable. Two studies showed that diazepam was effective
Acute in treating dyspnea,81,83 and one showed a reduction in dysp-
nea.84 Greene and colleagues85 reported an improvement in
Opioids
dyspnea with alprazolam; however, a randomized, placebo-
Add anxiolytic controlled, double-blind study did not nd any relief of dyspnea
with alprazolam.86 Clorazepate was not found to be effective for
breathlessness.87 Buspirone, a nonbenzodiazepine anxiolytic,
against placebo for the treatment of breathlessness in patients had no effect on pulmonary function tests or arterial blood
with any illness. In the studies involving nonnebulized routes gases in patients with COPD but improved exercise tolerance
of administration,46,48,54,58,60,6264 there was statistically strong and decreased dyspnea.88 This drug warrants further study.
evidence for a small effect of oral and parenteral opioids for
the treatment of breathlessness.61 Combinations. In a double-blind, placebo controlled, ran-
In recent years, there has been tremendous interest in the domized trial, Light and colleagues63 studied the effectiveness
use of nebulized opioids for the treatment of dyspnea. Opioid of morphine alone, morphine and promethazine, and mor-
receptors are present on sensory nerve endings in the airways65; phine and prochlorperazine for the treatment of breathless-
therefore, it is hypothesized that if the receptors were inter- ness in patients with COPD. The combination of morphine
rupted directly, lower doses, with less systemic side effects, and promethazine signicantly improved exercise tolerance
would be required to control breathlessness. The recent sys- without worsening dyspnea, compared with placebo, morphine
temic review61 identied nine randomized double-blind, con- alone, or the combination of morphine and prochlorperazine.63
trolled trials comparing the use of nebulized opioids or placebo Ventafridda and colleagues89 also found the combination of
for the control of breathlessness.6674 The authors concluded morphine and chlorpromazine to be effective.
that there was no evidence that nebulized opioids were more
effective than nebulized saline in relieving breathlessness.61 It is Other Medications. Indomethacin reduced exercise-induced
hard to justify the continued use of nebulized opioids. breathlessness in a group of normal adults,90 but no benet
Physicians have been reluctant to prescribe opioids for dysp- was obtained in patients with diffuse parenchymal lung dis-
nea since the potential for respiratory failure was recognized ease91 or COPD.92 Although inhaled bupivacaine reduced
in the 1950s.75 The recent systematic review of opioids for exercise-induced breathlessness in normal volunteers,93 it failed
breathlessness identied 11 studies that contained information to decrease breathlessness of patients with interstitial lung dis-
on blood gases or oxygen saturation after intervention with opi- ease.94 Inhaled lidocaine did not improve dyspnea in six cancer
oids.61 Only one study reported a signicant increase in the arte- patients.95 Dextromethorphan did not improve breathlessness
rial partial pressure of carbon dioxide (PaCO2), but it did not of patients with COPD.96 None of these medications can be
rise above 40 mm Hg.62 In studies of cancer patients, morphine recommended for the treatment of dyspnea at this time.
did not compromise respiratory function as measured by respi-
ratory effort and oxygen saturation47,48,76 or respiratory rate and Nonpharmacological Interventions
PaCO2.47 It is now known that the development of clinically sig-
nicant hypoventilation and respiratory depression from opi- Oxygen. The usefulness of oxygen for the terminally ill patient
oids depends on the rate of change of the dose, the history of has been questioned.97,98 Most authorities currently recom-
previous exposure to opioids, and possibly the route of admin- mend oxygen for dyspneic hypoxic patients, even in the face of
istration.77 Early use of opioids improves quality of life and increasing hypercapnia to achieve and maintain a PaO2 of 55
allows the use of lower doses while tolerance to the respiratory to 60 mm Hg and an oxygen saturation of 88% to 90%.99,100
depressant effects develops.78 Twycross79 suggested that early use Bruera and colleagues101,102 demonstrated the benet of oxy-
of morphine or another opioid, rather than hastening death in gen therapy in 20 hypoxic patients with terminal cancer.
dyspneic patients, might actually prolong survival by reducing Rating of dyspnea by the patient, respiratory rate, oxygen sat-
physical and psychological distress and exhaustion. uration, and respiratory effort all improved with oxygen to
Traditionally, tube thoracostomy was performed with large-

Table 133 bore chest tubes connected to wall suction; this treatment
Guidelines for Oxygen Therapy
necessitated hospitalization and limited mobility, with sub-
Continuous oxygen stantial discomfort and expense. Recent studies have shown
PaO2 55 mm Hg or oxygen saturation 88% at rest the effectiveness of small-bore catheters and indwelling small
pleural catheters in the outpatient setting.108110
PaO2 of 56 to 59 mm Hg or oxygen saturation of 89% in the
presence of the following: Instillation of any of several sclerosing agents into the pleu-
ral space after adequate drainage by tube thoracostomy creates
Dependent edema, suggesting congestive heart failure
a chemical pleuritis that obliterates the pleural space and pre-
Cor pulmonale vents pleural uid reaccumulation. Because pleurodesis is
Polycythemia (hematocrit > 56%) often painful, intrapleural lidocaine is administered before the
Pulmonary hypertension instillation of the sclerosing agent to reduce local pain.
Patients also should be premedicated and should have ade-
Noncontinuous oxygen is recommended during exercise:
quate analgesic available after the procedure.
PaO2 55 mm Hg or oxygen saturation 88% with a low
level of exertion or during sleep
PaO2 of 55 mm Hg or oxygen saturation 88% associated Pericardial Effusion. As in all other situations, the approach to
with pulmonary hypertension, daytime somnolence, and management of a pericardial effusion depends on the persons
cardiac arrhythmias stage of disease, the prognosis, the potential benets and com-
plications, and the wishes of the patient and family. If pericar-
PaO2, partial pressure of oxygen in alveoli. dial tamponade with hemodynamic compromise is present
Source: Tarsy and Celli. Copyright 1995 Massachusetts Medical Society.
and treatment is appropriate, an emergency pericardiocentesis
All rights reserved (1995), reference 100.
is indicated, with aggressive intravenous uid support and
possible administration of a sympathomimetic agent to tem-
porize.111 Hemodynamic improvement usually occurs with
removal of 50 to 100 mL of pericardial uid. Continuous
a statistically signicantly greater degree than with air. In hypoxic
drainage can be achieved by placement of an indwelling pigtail
patients with COPD, oxygen supplementation improved sur-
catheter or creation of a pericardial window, or by percuta-
vival, pulmonary hemodynamics, exercise capacity, and neu-
neous balloon pericardotomy.112,113 Pericardial drainage can be
ropsychological performance.100 Guidelines for oxygen therapy
followed by instillation of a sclerosing agent to obliterate the
are shown in Table 133.
pericardial space.113 Radiation or systemic chemotherapy could
The role of oxygen in the treatment of nonhypoxic dyspnea
be considered if appropriate.114
is less clear. Woodcock and coworkers103 studied the effect of
oxygen on breathlessness in nonhypoxic patients with COPD.
Oxygen not only reduced breathlessness but also increased the Nursing Interventions
distance that the patients were able to walk. However, in a
study of nonhypoxic cancer patients with dyspnea, Bruera Many patients obtain relief of dyspnea by leaning forward
and colleagues104 found no signicant differences in dyspnea, while sitting and supporting their upper arms on a table. This
fatigue, and distance walked between those who received oxy- technique is effective in patients with emphysema,115 probably
gen or air during exercise. because of an improved length-tension state of the diaphragm,
which increases efciency.116
Pleural Effusions. Whether a malignant pleural effusion Pursed-lip breathing slows the respiratory rate and increases
requires treatment is determined by the degree of sympto- intraairway pressures, thus decreasing small airway collapse
matic compromise, the stage of the disease, the patients life during periods of increased dyspnea.117 Mueller and cowork-
expectancy, and the patients estimated tolerance for more ers51 found that pursed-lip breathing led to an increase in tidal
aggressive therapeutic approaches.105,106 At the time of initial volume and a decrease in respiratory rate at rest and during
diagnostic or therapeutic tap of the pleural effusion, the exercise in 7 of 12 COPD patients experiencing an improve-
removal of 1000 to 1500 mL of pleural uid helps predict ment in dyspnea. Pursed-lip breathing reduces dyspnea in
response to further therapies.106 If symptoms are not relieved about 50% of patients with COPD.118
and the lung does not reexpand, then further thoracenteses or People who are short of breath often obtain relief by sitting
insertion of a chest tube is unlikely to be of any benet, and near an open window or in front of a fan. Cold directed
treatment should include medications to relieve symptoms. In against the cheek119 or through the nose120,121 can alter ventila-
97% of cases, uid reaccumulates within 1 month after thora- tion patterns and reduce the perception of breathlessness, per-
centesis alone.107 Repeated thoracenteses increase the risk for haps by affecting receptors in the distribution of the trigeminal
pneumothorax, empyema, and pleural uid loculation and nerve that are responsive to both thermal and mechanical
therefore should be limited to people with a short life span. stimuli.119,120
Randomized controlled trials support the use of acupunc- of their medications, such as using a spacer with inhaled drugs
ture and acupressure to relieve dyspnea in patients with mod- or taking an additional dose of an inhaled beta-agonist before
erate to severe COPD.122,123 Acupuncture provided marked exercise.133 Patients should avoid activities in which their arms
symptomatic benet in breathlessness and in respiratory rate are unsupported, because these activities often increase breath-
in patients with cancer-related breathlessness.124 Other ran- lessness.129
domized controlled trials support the use of muscle relaxation Patients in distress should not be left alone. Social services,
with breathing retraining to reduce breathlessness in COPD nursing, and family input need to be increased as the patients
patients.125,126 ability to care for himself or herself decreases.134
Corner and colleagues127 found that weekly sessions with
a nurse research practitioner over 3 to 6 weeks, using coun-
9=
seling, breathing retraining, relaxation, and coping and
case study
adaptation strategies, significantly improved breathlessness
Mrs. P, a 45-Year-Old Woman with Dyspnea
and ability to perform activities of daily living compared with
controls. Carrieri and Janson-Bjerklie128 found that patients You are called to the room of Mrs. P and nd her sitting at
used self-taught relaxation to help control their breathless- the bedside, gasping for breath. You know the Mrs. P is a
ness. Others have found that formal muscle relaxation tech- 45-year-old woman with advanced ovarian carcinoma. She
niques decrease anxiety and breathlessness.129 Guided has known lung metastases and describes a progressive onset
imagery130 and therapeutic touch131 resulted in significant of worsening breathlessness with less and less activity. She
improvements in quality of life and sense of well-being in says that she had gone to the washroom to have a sponge
patients with COPD and patients with terminal cancer, bath and while combing her hair got quite breathless and
respectively, without any significant improvement in breath- struggled to make it back to her bed. While getting an
lessness. overbed table and pillow for her to rest on, you calmly
Nursing actions that intubated patients thought helpful instruct her to take slow, deep breaths and to use the breath-
included friendly attitude, empathy, providing physical support, ing technique that you had previously taught her. You note
staying at the bedside, reminding or allowing patients to con- that she is cyanosed and institute oxygen and fan to help
centrate on changing their breathing pattern, and providing relieve her breathlessness. On further examination, you nd
information about the possible cause of the breathlessness and that her trachea is deviated to the right, there is dullness to
possible interventions.132 percussion of her left chest, and there are decreased breath
sounds in the left lung eld. With institution of the oxygen,
Patient and Family Teaching fan, and focused breathing, you note that she is slightly less
distressed, but you ask her husband to stay with her while
Carrieri and Janson-Bjerklie128 identied strategies patients you prepare a dose of prn morphine. On your return 5 min-
used to manage acute shortness of breath. These strategies utes later, Mrs. Ps breathing has further improved but is still
could be taught to patients and their families. Patients bene- a little labored, so you administer the morphine. Her hus-
ted from keeping still with positioning techniques, such as band stays with her, and 15 minutes later, when you return,
leaning forward on the edge of a chair with arms and upper he has helped her back into bed, where she is resting
body supported, and using some type of breathing strategy, comfortably.
such as pursed-lip or diaphragmatic breathing. Some of the o]
patients distanced themselves from aggravating factors, and
others used self-adjustment of medications. Several subjects Summary
isolated themselves from others to gain control of their breath-
ing and diminish the social impact. Others used structured Dyspnea is a very common symptom in people with advanced
relaxation techniques, conscious attempts to calm down, and disease. The symptom is often unrecognized and therefore the
prayer and meditation. The study of Carrieri and Janson- patients receive little assistance in managing their breathless-
Bjerklie128 and another by Brown and colleagues21 demonstrated ness. Dyspnea can have profound effects on the persons qual-
that most subjects reported some changes in activities of liv- ity of life, because even the slightest exertion may precipitate
ing, such as changes in dressing and grooming, avoidance of breathlessness.
bending or stooping, advanced planning or reduction in activ-
ities, staying in a good frame of mind, avoidance of being
alone, and acceptance of the situation. o]o]o]
Patients and families should be taught about the signs and DEATH RATTLE
symptoms of an impending exacerbation and how to manage
the situation. They should learn problem-solving techniques Noisy, rattling breathing in patients who are dying is com-
to prevent panic, ways of conserving energy, how to prioritize monly known as death rattle. This noisy, moist breathing can
activities, use of fans, and ways to maximize the effectiveness be very distressing for the family, other patients, visitors, and
health care workers, because it may appear that the person is (e.g., cigarette smoke). The secretory ow rate and amount,
drowning in his or her own secretions.135 Management of death as well as the viscoelastic properties of the mucus, can be
rattle can present health care providers a tremendous challenge altered.145
as they attempt to ensure a peaceful death for the patient.136 The audible breathing of the so-called death rattle is pro-
duced when turbulent air passes over or through pooled secre-
Denition tions in the oropharynx or bronchi. The amount of turbulence
depends on the ventilatory rate and airway resistance.143
Death rattle is a term applied to describe the noise produced by Mechanisms of death rattle include excessive secretion of res-
the turbulent movements of secretions in the upper airways piratory mucus, abnormal mucus secretions inhibiting nor-
that occur with the inspiratory and expiratory phases of respi- mal clearance, dysfunction of the cilia, inability to swallow,
ration in patients who are dying.137 decreased cough reex due to weakness and fatigue, and the
supine recumbent position. Factors that may contribute to
Prevalence and Impact respiratory congestion include infection or inammation,
pulmonary embolism producing infarction and uid leakage
Death rattle occurs in 23% to 92% of patients in their last from damaged cells, pulmonary edema or CHF,147 dysphagia,
hours before death.137142 Studies have shown that there is an and odynophagia. Although it has been suggested that a state
increased incidence of respiratory congestion in patients with of relative dehydration decreases the incidence of problematic
primary lung cancer139,142 or cerebral metastases,142,143 with the bronchial secretions,148 Ellershaw and colleagues139 found no
symptom more likely to persist in cases with pulmonary statistically signicant difference in the incidence of death rat-
pathology.142 The incidence of death rattle increases closer to tle in a biochemically dehydrated group of patients, compared
death142; the median time from onset of death rattle to death is with a group of hydrated patients.
8 to 23 hours.140142 Most commonly this symptom occurs Bennett143 proposed two types of death rattle. Type 1 involves
when the persons general condition is very poor, and most mainly salivary secretions, which accumulate in the last few
patients have a decreased level of consciousness.142 If the per- hours of life when swallowing reexes are inhibited. Type 2 is
son is alert, however, the respiratory secretions can cause him characterized by the accumulation of predominantly bronchial
or her to feel very agitated and fearful of suffocating. Despite secretions over several days before death as the patient becomes
the identication of noisy breathing as a problem in 39% of too weak to cough effectively. This characterization has been
patients dying in a long-term care setting, 49% of them empirically supported by Morita and colleagues142 and there-
received no treatment.144 In one study of the attitudes of pal- fore may prove useful to determine appropriate treatment.
liative care nurses, about the impact of death rattle, 13% thought
that death rattle distressed the dying patient; 100% thought it Assessment
distressed the dying persons relatives, with 52% indicating
that bereaved relatives had mentioned death rattle as a source Assessment of death rattle includes a focused history and
of distress; and 79% thought that death rattle distressed physical examination to determine potentially treatable under-
nurses.136 lying causes. If the onset is sudden and is associated with acute
shortness of breath and chest pain, it might suggest a pul-
Pathophysiology monary embolism or myocardial infarction. Physical ndings
consistent with CHF and uid overload might support a trial
The primary defense mechanism for the lower respiratory of diuretic therapy; the presence of pneumonia indicates a
tract is the mucociliary transport system. This system is a pro- trial of antibiotic therapy. The effectiveness of interventions
tective device that prevents the entrance of viruses, bacteria, should be included in the assessment. The patients and fam-
and other particulate matter into the body.145147 The surface of ilys understanding and emotional response to the situation
the respiratory tract is lined with a liquid sol phase near the should also be assessed so that appropriate interventions can
epithelium and a supercial gel phase in contact with the air.145 be undertaken.
Ciliated epithelial cells, located at all levels of the respiratory A recently developed and validated assessment tool, the
tract except the alveoli and the nose and throat, are in constant Victoria Respiratory Congestion Scale (VRCS),149 is clinically
movement to propel the mucus up the respiratory tract, to be useful to determine the effectiveness of interventions. This
either subconsciously swallowed or coughed out. The mucus instrument rates the congestion on a scale from 0 to 3 scale,
is produced by submucosal glands, which are under neural with 0 indicating no congestion heard at 12 inches from the
and humoral control. The submucosal glands are under chest; 1 indicating congestion audible only at 12 inches from
parasympathetic, sympathetic, and noncholinergic nonadren- the chest; 2 indicating congestion audible at foot of patients
ergic nervous control. Resting glands secrete approximately bed; and 3 indicating congestion audible at door of patients
9 mL/min., but mechanical, chemical, or pharmacological room. This scale has demonstrated interrater reliability
stimulation (via vagal pathways) of the airway epithelium can ( = 0.53, P < 0.001) and concurrent validity with a noise
augment gland secretion. Surface goblet cells also produce meter (P < 0.001). It was weakly correlated with a caregiver
mucus secretions, which can be increased with irritant stimuli distress scale ( = 0.24, P < 0.001).
Management
Table 134
Management of Death Rattle
Pharmacological Interventions
Change position
Primary treatment should be focused on the underlying disor- Reevaluate if receiving intravenous hydration
der, if appropriate to the prognosis and the wishes of the
Pharmacological management
patient and family. If this is not possible, then anticholinergics
Chronic
are the primary mode of treatment. Hyoscine hydrobromide
(scopolamine), atropine sulfate, hyoscine butylbromide (Bus- Glycopyrrolate or hyoscine hydrobromide patch
copan), and glycopyrrolate (Robinul) are the anticholinergic If treatment fails: subcutaneous hyoscine hydrobromide
agents that are used to treat death rattle. Anticholinergic drugs or subcutaneous atropine sulfate
can prevent vagally induced increased bronchial secretions, Acute
but they reduce basal secretions by only 39%.145 A recent Subcutaneous hyoscine hydrobromide or subcutaneous
evidence-based guideline stated that there is insufcient evi- atropine sulfate
dence to support the use of one drug over another and that the
decision should be based on the drug characteristics and the
needs of the patient.150 disputed this nding and suggest it is also more cost-effective.153
Hyoscine hydrobromide (scopolamine) is the primary Glycopyrrolate is available in an oral form and can be useful
medication used for the treatment of death rattle. It inhibits for patients at an earlier stage of disease, when sedation is not
the muscarinic receptors and causes anticholinergic actions desired.
such as decreased peristalsis, gastrointestinal secretions, seda- Hyoscine butylbromide (Buscopan) is another anticholin-
tion, urinary retention, and dilatation of the bronchial smooth ergic drug, but it has not been evaluated for its effectiveness in
muscle. It is administered subcutaneously, intermittently or by this condition. It is available in injection, suppository, and tablet
continuous infusion, or transdermally.138,139,143,151 In one study,152 forms.
hyoscine hydrobromide 0.4 mg subcutaneously was immedi-
ately effective and only 6% of the patients required repeated Nonpharmacological Interventions
doses. In an open label study of the treatment of death rat-
tle, 56% of patients who received hyoscine hydrobromide There are times when the simple repositioning of the patient
had a signicantly reduced noise level after 30 minutes, may help him or her to clear the secretions (Table 134). Suc-
compared with 27% of patients who had received glycopyrro- tioning usually is not recommended, because it can be very
late (P = 0.002).135 In other studies, between 22% and 65% of uncomfortable for the patient and causes signicant agitation
patients did not respond to hyoscine hydrobromide, and and distress. Pharmacological measures are usually effective
secretions recurred from 2 to 9 hours after the injection.138 In and prevent the need for suctioning. If the patient has copious
a retrospective study of 100 consecutive deaths in a 22-bed secretions that can easily be reached in the oropharynx, then
hospice, 27% of patients received an infusion of hyoscine suctioning may be appropriate. In a study conducted at
hydrobromide, with 5 of 17 requiring injections despite receiv- St. Christophers Hospice, suctioning was required in only 3 of
ing an infusion.143 82 patients to control the secretions.139 In another study, 31% of
Atropine sulfate is another anticholinergic drug that is the patients required only nursing interventions with reassur-
preferred by some centers for the treatment of respiratory ance, change in position, and occasional suctioning to manage
congestion.147 In a study of 995 doses of atropine, congestion respiratory congestion in the last 48 hours of life.152
was decreased in 30% of patients, remained the same in 69%,
and increased in 1%.147 Atropine is the drug of choice of this Patient and Family Teaching
group, because it results in less CNS depression, delirium, and
restlessness, with more bronchodilatory effect, than hyoscine The patient and the family can be very distressed by this symp-
hydrobromide. There is, however, the risk of increased tachy- tom. It is important to explain the process, to help them
cardia with atropine sulfate when doses > 1.0 mg are given. understand why there is a buildup of secretions and that there
Hyoscine hydrobromide is thought to have a more potent is something that can be done to help. The Victoria Hospice
effect on bronchial secretions than atropine does,137 but no group suggests using the term respiratory congestion as
comparative trials have been conducted in the palliative popu- opposed to death rattle, suffocation, or drowning in spu-
lation. tum, because these terms instill strong emotional reactions.147
Glycopyrrolate (Robinul) is also an anticholinergic agent. When explaining to families the changes that can occur before
It has the advantages of producing less sedation and agitation death, this is one of the symptoms that should be mentioned.
and a longer duration of action than hyoscine hydrobromide. If the person is being treated at home, the family should be
In two studies in which its effectiveness was compared with instructed as to the measures available to relieve death rattle
that of hyoscine hydrobromide, glycopyrrolate was not as and to notify their hospice or palliative care team if it occurs,
effective in controlling secretions.135,138 However, others have so that appropriate medications can be ordered.
9= Prevalence and Impact

case study
Mrs. S, a 60-year-old Woman with Chronic cough is a common problem; recurrent cough is
Metastatic Breast Cancer reported by 3% to 40% of the population.154 In population
surveys, men report cough more frequently than women do,
When you start your shift and are walking down the hallway,
but women appear to have an intrinsically heightened cough
you hear a loud gurgling noise as you pass Mrs. Ss room. You
response.154 Cough is often present in people with advanced
enter and nd her family surrounding the bed and looking
diseases such as bronchitis, CHF, uncontrolled asthma, human
extremely distressed. Mrs. S. has very advanced metastatic
immunodeciency virus infection, and various cancers. In a
breast cancer to lung, bones, and brain. Her condition has
study of 289 patients with nonsmall cell lung cancer, cough
deteriorated markedly over the past few days. She is very rest-
was the most common symptom (> 60%) and the most severe
less and is pulling at the intravenous line that is running at
symptom at presentation.15 Eighty percent of the group had
125 mL/h. There are audible gurgling sounds as she breaths,
cough before death. Over time, cough and breathlessness were
with diffuse crackles throughout her chest, and 3+ pitting
much less well controlled than the other symptoms in this
edema of all of her limbs. Her daughter, in tears, says, It
group of patients.
sounds like she is choking to death! Please do something!
In a study of 25 advanced cancer patients designed to eval-
While you help to reposition Mrs. S, you explain why this is
uate treatment of cough, 88% of patients rated their cough as
happening and suction some of the mucus that has accumu-
moderate or severe and 68% coughed > 10 times per day.156
lated in her mouth. You go to the desk and get an order from
Cough was found to interfere with breathing, sleep, and
the doctor for some furosemide, to change the intravenous
speech and was associated with coughing spasms, pain, nausea,
line to a saline lock, and for an as needed dose of hyoscine
and vomiting.156
hydrobromide subcutaneously. You administer the
In patients with lung cancer, hemoptysis is the presenting
furosemide, but there is minimal improvement; therefore,
symptom 7% to 10% of the time, 20% have it at some time dur-
you give Mrs. S an injection of hyoscine hydrobromide, and
ing their clinical course, and 3% die of massive hemoptysis.155
within 20 minutes she has settled.
The mortality rate of massive hemoptysis in patients with lung
o]
cancer can be as high as 59% to 100%.155
Summary Pathophysiology
Although death rattle is a relatively common problem in peo- Cough is characterized by a violent expiration, with ow rates
ple who are close to death, very few studies have evaluated the that are high enough to sheer mucus and foreign particles
effectiveness of treatment. Anticholinergics are the drugs of away from the larynx, trachea, and large bronchi. The cough
choice at this time. Death rattle can be a very distressing for reex can be stimulated by irritant receptors in the larynx and
family members at the bedside, and they need to receive good pharynx or by pulmonary stretch receptor, irritant receptor, or
teaching and reassurance. C-ber stimulation in the tracheobronchial tree.157 Different
mechanisms are involved in isolation or together in patients
with cough of various causes.158 The vagus nerve carries sen-
o]o]o] sory information from the lung that initiates the cough reex.
COUGH Infection can physically or functionally strip away epithelium,
exposing sensory nerves and increasing the sensitivity of these
Cough is a natural defense of the body to prevent entry of nerves to mechanical and chemical stimuli. It is also thought
foreign material into the respiratory tract. In people with that inammation produces prostaglandins, which further
advanced disease, it can be very debilitating, leading to sleep- increase the sensitivity of these receptors, leading to bronchial
less nights, fatigue, pain, and at times pathological fractures. hyperreactivity and cough. When cough is associated with
increased sputum production, it probably results from stimu-
Denition lation of the irritant receptors by the excess secretion.157 Cough
is associated with respiratory infection, bronchitis, rhinitis,
Cough is an explosive expiration that can be a conscious act or postnasal drip, esophageal reux, medications including
a reex response to an irritation of the tracheobronchial tree. angiotensin-converting enzyme inhibitors,157 asthma, COPD,
Cough lasting < 3 weeks is considered acute, and that lasting pulmonary brosis, CHF, pneumothorax, bronchiectasis, and
> 8 weeks is considered chronic.154 A dry cough occurs when no cystic brosis.98 In the person with cancer, cough may be
sputum is produced; a productive cough is one in which spu- caused by any of these conditions; however, direct tumor
tum is raised. Hemoptysis occurs when the sputum contains effects (e.g., obstruction), indirect cancer effects (e.g., pul-
blood. Massive hemoptysis is expectoration of at least 100 to monary emboli), and cancer treatment effects (e.g., radiation
600 mL of blood in 24 hours.155 therapy) could also be the cause.159
Hemoptysis can result from bleeding in the respiratory

tract anywhere from the nose to the lungs. It varies from blood Table 135
Treatment of Nonproductive Cough
streaking of sputum to coughing up of massive amounts of
blood. There are multiple causes of hemoptysis, but some of Nonopioid antitussive (dextromethorphan, benzonatate)
the more common ones are a tracheobronchial source, sec- Opioids
ondary to inammation or tumor invasion of the airways; a
Inhaled anesthetic (lidocaine, bupivacaine)
pulmonary parenchymal source, such as pneumonia or abscess;
a primary vascular problem, such as pulmonary embolism; a
miscellaneous cause, such as a systemic coagulopathy resulting acting agents (which directly or indirectly act on cough
from vitamin K deciency, thrombocytopenia, or abnormal receptors).156
platelet function secondary to bone marrow invasion with
tumor, sepsis, or disseminated intravascular coagulation; or an Centrally Acting Antitussives
iatrogenic cause, such as use of anticoagulants, nonsteroidal
antiinammatory drugs, or acetylsalicylic acid.160 Opioids suppress cough, but the dose is higher than that con-
tained in the proprietary cough mixtures.157 The exact mode of
Assessment action is unclear, but it is thought that opioids inhibit the mu
receptor peripherally in the lung; act centrally by suppressing
In assessing someone with cough, it is important to do a thor- the cough center in the medulla or the brainstem respiratory
ough history and physical examination. Because cough may centers; or stimulate the mu receptor, thus decreasing mucus
arise from anywhere in the distribution of the vagus nerve, the production or increasing mucus ciliary clearance.157 Codeine
full assessment of a patient with a chronic cough requires a mul- is the most widely used opioid for cough; some authors claim
tidisciplinary approach with cooperation between respiratory that it has no advantages over other opioids and provides no
medicine, gastroenterology, and ear, nose, and throat (ENT) additional benet to patients already receiving high doses of
departments.154 The assessment helps to determine the underly- opioids for analgesia,161 whereas others state that the various
ing cause and appropriate treatment of the cough. Depending opioids have different antitussive potencies.156
on the diagnosis, the prognosis, and the patients and familys More than 200 synthetic nonopioid antitussive agents are
wishes, it may be appropriate to perform diagnostic tests, available; most are less effective than codeine.162 Dextromethor-
including chest or sinus radiography, spirometry before and phan, a dextro isomer of levorphanol, is an exception; it is almost
after bronchodilator and histamine challenge, and, in special equiantitussive to codeine. Dextromethorphan acts centrally
circumstances in people with earlier-stage disease, upper gas- through nonopioid receptors to increase the cough threshold.161
trointestinal endoscopy and 24-hour esophageal pH monitor- Benzonatate is a nonopioid antitussive with a sustained cough-
ing. In patients with signicant hemoptysis, bronchoscopy is depressing action163 that provided excellent symptomatic relief
usually needed to identify the source of bleeding. for three cancer patients with opioid-resistant cough.164 Opioid
In the history and physical examination, one should look and nonopioid antitussives may act synergistically,161 but further
for a link between cough and the associated factors listed in studies are needed to conrm this hypothesis.
the previous section, whether the cough is productive, the
nature of the sputum, the frequency and amount of blood, Peripherally Acting Antitussives
precipitating and relieving factors, and associated symptoms.
Demulcents are a group of compounds that form aqueous solu-
Management tions and help to alleviate irritation of abraded surfaces. They
are often found in over-the-counter cough syrups. Their mode
It is important to base management decisions on the cause of action for controlling cough is unclear, but it is thought that
and the appropriateness of treating the underlying diagnosis, the sugar content encourages saliva production and swallowing,
compared with simply suppressing the symptom. This deci- which leads to a decrease in the cough reex; stimulates the sen-
sion is based on the diagnosis, prognosis, side effects, and pos- sory nerve endings in the epipharynx, and decreases the cough
sible benets of the intervention, and the wishes of the patient reex by a gating process; or the demulcents may act as a pro-
and family. Management strategies also depend on whether tective barrier by coating the sensory receptors.157
the cough is productive (Table 135). Theoretically, cough sup- Benzonatate is an antitussive that inhibits cough mainly by
pressants, by causing mucus retention, could be harmful in anesthetizing the vagal stretch receptors in the bronchi, alveoli,
conditions with excess mucus production.157 and pleura.156 Other drugs that act directly on cough receptors
include levodropropizine, oxalamine, and prenoxdiazine.156
Pharmacological Interventions Inhaled anticholinergic bronchodilators, either alone or in
combination with a 2-adrenergic agonists, effectively decrease
Antitussive drugs can be divided into two categories: centrally cough in people with asthma and in normal subjects.165 It is
acting agents (opioids and nonopioids) and peripherally thought that they decrease input from the stretch receptors,
thereby decreasing the cough reex, and change the mucocil- abdomen with a pillow, blows out sharply three times, holds
iary clearance. the breath, and then coughs. This technique seems to improve
The local anesthetic lidocaine is a potent suppressor of the effectiveness of a cough and helps to expel sputum.
irritant-induced cough and has been used as a topical anesthetic If the patient is having hemoptysis and massive bleeding is
for the airway during bronchoscopy. Inhaled local anesthetics, a possibility, it is important to educate the family about this
such as lidocaine and bupivacaine, delivered by nebulizer, sup- possibility, to prepare them psychologically and develop a
press some cases of chronic cough for as long as 9 weeks.157,166168 treatment plan. Dark towels or blankets can help to minimize
Higher doses can cause bronchoconstriction, so it is wise to the visual impact of this traumatic event. Adequate medications
observe the rst treatment. Patients must also be warned not should be immediately available to control any anxiety or dis-
to eat or drink anything for 1 hour after the treatment or until tress that might occur. Family and staff require emotional sup-
their cough reex returns. port after such an event.
Productive Coughs 9=
case study
Interventions for productive coughs include chest physio-
RM, a 67-Year-Old Man with NonSmall Cell
therapy, oxygen, humidity, and suctioning. In cases of
Carcinoma of the Lung
increased sputum production, expectorants, mucolytics, and
agents to decrease mucus production can be employed.156 RM is a 67-year-old man who presented to his family doctor 2
Opioids, antihistamines, and anticholinergics decrease mucus months ago with a 20-pound weight loss, hemoptysis, and
production and thereby decrease the stimulus for cough. shortness of breath. He was found to have an endobronchial
adenocarcinoma of the lung with liver and bone metastases.
Massive Hemoptysis He was treated with a course of radiotherapy, and the hemopt-
ysis stopped. You are visiting him at home and nd that he
In patients with massive hemoptysis, survival is so poor that now has a dry, nonproductive cough that keeps him awake at
patients may not want any kind of intervention to stop the night and is sometimes so forceful that he vomits. He is receiv-
bleeding; in such cases, maintenance of comfort alone becomes ing hydromorphone 4 mg orally every 4 hours for pain. He has
the priority. For those patients who want intervention to stop had a trial of demulcents, dextromethorphan, and opioids for
the bleeding, the initial priority is to maintain a patent airway, his cough, with little effect. He has no evidence of pneumonia
which usually requires endotracheal intubation. Management on physical examination but does have some scattered
options include endobronchial tamponade of the segment, wheezes. You suggest a trial of inhaled Ventolin and Atrovent
vasoactive drugs, iced saline lavage, neodymium/yttrium- every 6 hours. When you next see him, he reports that his
aluminum-garnet (Nd/YAG) laser photocoagulation, electro- cough is much better and he has been able to get some rest.
cautery, bronchial artery embolization, and external beam or o]
endobronchial irradiation.155
Summary
Nonpharmacological Interventions
Chronic cough can be a disabling symptom for patients. If the
If cough is induced by a sensitive cough reex, then the person underlying cause is unresponsive to treatment, then suppres-
should attempt to avoid the stimuli that produce this. They sion of the cough is the major therapeutic goal.
should stop or cut down smoking and avoid smoky rooms,
cold air, exercise, and pungent chemicals. If medication is
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14o] Mikel Gray and Fern Campbell
Urinary Tract Disorders

As if being sick and dying isnt enoughits all the indignity before you go. Losing control of my
bladder and feeling like a baby in diapers has been the worst . . . when my daughter came and saw
me like this (with the diaper), thats when she just lost it.A patient
Key Points In many ways, the techniques used for management of

The urinary system is frequently the cause of bothersome or urinary symptoms are similar to those used for patients
deleterious symptoms that affect the patient receiving palliative care. in any care setting. However, in contrast to traditional
A malignancy or systemic disease may affect voiding function and interventions, the evaluation and management of urinary
produce urinary incontinence, urinary retention, or upper urinary tract symptoms in the palliative care setting are influ-
tract obstruction. enced by considerations of the goals of care and closeness to
Frequent lower urinary tract symptoms (LUTS) include intermittent death.
or continuous urinary leakage, daytime voiding frequency, excessive Urinary system disorders may be directly attributable to a
nocturia, bothersome urgency, feelings of incomplete bladder malignancy, systemic disease, or a specic treatment such as
emptying, and the abrupt cessation of urination. radiation or chemotherapy. This chapter provides a detailed
Upper urinary tract symptoms include ank or abdominal pain overview of the anatomy and physiology of the urinary sys-
and constitutional symptoms related to acute renal insufciency tem, which serves as a framework for understanding of the
or failure. pathophysiology of bothersome symptoms and their man-
Signicant hematuria leading to clot formation and catheter agement. This is followed by a review of commonly encoun-
blockage is an uncommon but signicant complication of pelvic tered urinary symptoms seen in the palliative care setting,
radiation therapy. Bleeding may occur months to years including bothersome lower urinary tract symptoms (LUTS),
following radiotherapy. lower urinary tract pain, urinary stasis or retention, and
Initial treatment of hematuria includes continuous bladder hematuria.
irrigation to evacuate clots from the bladder vesicle until the fragile
bladder wall heals. If hematuria recurs, more aggressive treatment
options include intravesical alum or prostaglandins. Intravesical o]
formalin treatments are reserved for very severe cases of blood loss. Lower Urinary Tract Disorders
Bladder spasms may be associated with urinary tract infection or
catheter blockage, or they may be idiopathic. Any apparent Lower Urinary Tract Physiology
underlying cause of bladder spasms, such as a urinary tract
infection, should be treated initially. The lower urinary tract comprises the bladder, urethra, and
An antimuscarinic medication should be used for long-term relief of supportive structures within the pelvic oor (Figures 141 and
bladder spasms. Extended-release or transdermal agents are usually 142). Together, these structures maintain urinary continence,
preferred because of their favorable side effect proles and avoidance which can be simply dened as control over bladder lling and
of the need for frequent dosing. However, classic anticholinergic storage and the act of micturition. Continence is modulated
drugs may be required if bladder spasms prove refractory to by three interrelated factors: (1) anatomic integrity of the uri-
extended or transdermal formulations. nary tract, (2) control of the detrusor muscle, and (3) compe-
A suprapubic catheter may be used as an alternative to urethral tence of the urethral sphincter mechanism.1,2 Each may be
catheterization after urethral trauma or in the presence of urethral compromised in the patient receiving palliative care, leading
obstruction in cases of urethral injury, strictures, prostate obstruction, to bothersome LUTS, urinary retention, or a combination of
after gynecologic surgery, or for long-term catheterization. these disorders.
265
266 Symptom Assessment And Management
Female Urinary Tract Male Urinary Tract
Kidney
Kidney
Renal pelvis
Renal pelvis
Ureteropelvic
Ureteropelvic Junction (UPJ)
Junction (UPJ)
Ureter
Ureter
Urinary Bladder
Urinary Bladder
Prostate
Urethra
Urethra
Figure 141. The female urinary tract. Figure 142. The male urinary tract.
Anatomic Integrity Whereas modulatory centers within the brain are essential
for continence, the primary integration centers for bladder ll-
From a physiological perspective, the urinary system comprises ing and micturition are found within the brainstem.10 Specic
a long tube originating in the glomerulus and terminating at areas within the brainstem control bladder lling and storage
the urethral meatus. When contemplating urinary continence, under the inuence of higher brain regions. These areas include
anatomical integrity of the urinary system is often assumed, the periaqueductal gray matter, which is responsible for co-
particularly because extraurethral urinary incontinence (UI) is ordinating multiple groups of neurons in the brainstem; the
uncommon. However, anatomical integrity may be lost in the L and M regions, which modulate bladder lling and initiate the
patient receiving palliative care due to a stula that bypasses the detrusor contraction; and the pontine micturition center, which
urethral sphincter. This epithelialized tract allows continuous coordinates the reexive response of the urethral sphincter
urinary leakage, which varies from an ongoing dribble in a mechanism. Recognition of the signicance of the brainstem
patient with otherwise normal urine elimination habits to total micturition center is particularly important when providing
UI characterized by failure of bladder lling and micturition.3 palliative care, because a neurological lesion above the brainstem
causes urge UI with a coordinated sphincter response, whereas
Control of the Detrusor lesions below this center affect bladder sensations and the coor-
dination between the detrusor and the urethral sphincter.
In addition to a structurally intact urinary system, continence The brainstem micturition center communicates with the
requires volitional control over detrusor contraction.1,2 Con- bladder via spinal roots in the thoracolumbar and sacral seg-
trol of this smooth muscle can be conceptualized on three lev- ments.4 Segments in the thoracolumbar spine (T10L2) carry
els. Multiple modulatory centers within the central nervous sympathetic nervous impulses that promote bladder lling
system modulate the detrusor reex, allowing inhibition of and storage, whereas segments S2S4 transmit parasympa-
detrusor activity until the person wishes to urinate. Detrusor thetic impulses to the bladder wall, allowing micturition
control is also inuenced by its histological characteristics. under modulation by the brain and brain-stem. These impulses
The nervous control of the detrusor relies on input from are carried through several peripheral nerve plexi, including
multiple modulatory areas within the brain and spinal cord.4 the pelvic and inferior hypogastric plexi.
Bilateral detrusor motor areas are found within the lobes of Histological characteristics of the detrusor also contribute
the frontal cortex.5 This modulatory center interacts with neu- to its voluntary control.11 Unlike the visceral smooth muscle of
rons in the thalamus,6 hypothalamus,7 basal ganglia,8 and cere- the bowel, stomach, or ureter, the detrusor muscle bundles are
bellum9 to modulate bladder lling and voiding. The net effect innervated on an almost one-to-one basis. The smooth muscle
of these areas on continence is the maintenance of a stable bundles of the detrusor also lack gap junctions, observed in
detrusor that does not contract, even when provoked, until the other visceral organs, which allow propagation of a contraction
person desires to urinate.1,2 independent of nervous stimulation. These characteristics
Urinary Tract Disorders 267
promote urinary continence because they discourage sponta- muscular elements of the urethral sphincter comprise the
neous contractions of the detrusor in response to bladder ll- smooth muscle of the bladder neck and proximal urethra
ing, as is characteristic of other visceral organs. (including the prostatic urethra in men), the rhabdosphinc-
On a molecular level, specic chemical substances, com- ter, and the periurethral striated muscles. 1-Adrenergic recep-
monly called neurotransmitters, exert local control over the tors in the smooth muscle of the bladder neck and proximal
detrusor muscle.12 Several neurotransmitters are released from urethra promote sphincter closure when exposed to the neuro-
the axons of neurons within the bladder wall and act at specic transmitter norepinephrine.14 Innervation of the rhabdosphinc-
receptors to produce smooth muscle contraction or relaxation. ter is more complex. Acetylcholine acts on nicotinic receptors
Norepinephrine acts through 3-adrenergic receptors, promot- in the rhabdosphincter to stimulate muscle contraction. In
ing detrusor muscle relaxation, and acetylcholine acts through addition, norepinephrine and serotonin (5HT) act on neurons
muscarinic receptors, leading to detrusor contraction and mic- within Onuf s nucleus (located at sacral spinal segments 2
turition. Although it has long been known that the cholinergic through 4), modulating rhabdosphincter tone during bladder
receptors within the detrusor are muscarinic, physiological lling and storage.15 A novel substance, duloxetine, is a bal-
studies have identied at least ve muscarinic receptor sub- anced serotonin and norepinephrine reuptake inhibitor that is
types (M1 through M5).13 Receptor subtypes M2 and M3 pre- undergoing clinical investigation to determine its safety and
dominate within the bladder wall and are primarily responsible efcacy for the management of stress urinary incontinence.
for the detrusor contraction that leads to micturition. Identi-
cation of these receptor subtypes is clinically relevant because it Pathophysiology of Urinary Incontinence
has facilitated the development of drugs that act on the bladder
but produce fewer side effects than the older (nonselective) Urinary incontinence is dened as the uncontrolled loss of
drugs traditionally used to manage urge UI or bladder spasms. urine of sufcient magnitude to create a problem.16 It is ini-
tially characterized as acute or chronic, according to its pre-
Competence of the Urethral Sphincter Mechanism sentation and underlying pathophysiology. Causes of acute UI
may be classied according to the DIAPERS mnemonic (Table
The urethral sphincter comprises a combination of compres- 141). Several conditions, including acute delirium, restricted
sive and tension elements to form a watertight seal against uri- mobility, stool impaction, and specic medications, may occur
nary leakage, even when challenged by physical exertion or in patients receiving palliative care and should be considered
sudden increases in abdominal pressure caused by coughing, when assessing and managing UI.
laughing, or sneezing.1,2 The soft urethral mucosa interacts Chronic UI is subdivided into types according to its pre-
with mucosal secretions and the submucosal vascular cushion senting symptoms or underlying pathophysiology.17 Stress UI
to ensure a watertight seal that rapidly conforms to changes. occurs when physical stress (exertion) causes urine loss in the
Whereas the elements of compression provide a watertight absence of a detrusor contraction. Two conditions lead to stress
seal for the urethra, striated and smooth muscle within the ure- UIurethral hypermobility (descent during physical activity)
thral wall and within the surrounding pelvic oor are necessary and intrinsic sphincter deciency (incompetence of the striated
when sphincter closure is challenged by physical exertion. The or smooth muscle within the urethral sphincter mechanism).
Table 141
Causes of Acute Urinary Incontinence (DIAPERS Mnemonic)
Delirium Acute delirium may cause functional UI, which resolves when underlying disease and related
delirium subside.
Infection A urinary tract infection may cause or exacerbate UI.
Atrophic urethritis Although atrophic urethritis has been associated with irritative voiding symptoms and stress UI,
systemic hormone replacement therapy has not been shown to alleviate associated UI.
Pharmacy Multiple drugs may contribute to UI.
Opioids, sedatives, antidepressants, antipsychotics, and antiparkinsonian drugs suppress detrusor
contractility and increase the risk of urinary retention and overow UI. -Adrenergic blocking
agents may cause stress UI in women. -Adrenergic agonists increase smooth muscle tone in the
male urethra and raise the risk of acute urinary retention.
Excessive urine production Diabetes mellitus or insipidus causes polyuria and subsequent UI.
Restricted mobility Restriction of mobility leads to UI when it prevents access to toileting facilities.
Stool impaction Stool impaction increases the risk of UI, urinary retention, and urinary tract infection.
UI, urinary incontinence

Extraurethral UI occurs when a stula creates an opening

Table 142 between the bladder and the vagina or skin, allowing urine to
Causes of Intrinsic Sphincter Deciency in the Patient
bypass the urethral sphincter. Within the context of palliative
Receiving Palliative Care
care, stulas are usually caused by invasive pelvic or gynecol-
Urethral Surgery ogical malignancies, extensive pelvic surgery, or radiation
Radical prostatectomy treatment.3
Transurethral prostatectomy
Cryosurgery
o]
Multiple urethral suspensions in women Assessment and Management of Bothersome LUTS:
Surgery Indirectly Affecting the Urethra via Urinary Incontinence
Local Denervation
Abdominoperineal resection The results of a focused history, physical assessment, urinaly-
sis, and bladder log are essential for the evaluation of UI in the
Pelvic exenteration
patient receiving palliative care. Urine culture and sensitivity
Radical hysterectomy testing, blood tests, urodynamic evaluation, or imaging stud-
Neurological Lesions of the Lower Spine ies also may be completed in specic cases.
The history focuses on the duration of the problem and the
Primary or metastatic tumors of the sacral spine
probable cause of bothersome symptoms. Acute UI is typically
Pathological fracture of the sacral spinal column
characterized by a sudden occurrence of urinary leakage or an
Multiple sclerosis acute exacerbation of preexisting symptoms. These symptoms
Tertiary syphilis are typically similar to those of urge or stress UI. In contrast,
chronic or established UI usually evolves over a period of time,
typically months or possibly years.
The history can also be used to provide clues about the type
Although urethral hypermobility is rarely the primary cause of of chronic UI. Stress UI is characterized by urine loss occur-
signicant stress UI in the patient receiving palliative care, ring with physical exertion or a sudden increase in abdominal
intrinsic sphincter deciency may compromise sphincter clo- pressure caused by coughing or sneezing. It occurs in the absence
sure and lead to severe urinary leakage. Intrinsic sphincter de- of a precipitous and strong urge to urinate. Approximately
ciency occurs when the nerves or muscles necessary for 36% of patients with overactive bladder syndrome experience
sphincter closure are denervated or damaged.18 Table 142 lists urge UI. (The diagnosis of overactive bladder is based on a
conditions that are likely to cause intrinsic sphincter deciency combination of symptoms: diurnal voiding frequency, noc-
in patients receiving palliative care. turia, bothersome urgency with or without the symptom of
Urge UI occurs when overactive detrusor contractions pro- urge UI, and urinary leakage associated with a sudden desire
duce urinary leakage.17 Urge UI has recently been dened as to urinate).21 A diagnosis of overactive bladder cannot be
part of a larger symptom syndrome called the overactive accurately inferred from a report of the symptom of urge UI
bladder. Overactive bladder is characterized by bothersome alone.
urgency (a sudden and strong urge to urinate), and it is typi- Reex UI is suspected in the patient who experiences a par-
cally associated with daytime voiding frequency (more than alyzing neurological lesion that affects spinal segments below
every 2 hours) and nocturia (3 episodes per night). Reex UI, the brainstem and above S2. The patient frequently reports
in contrast, is caused by a neurological lesion below the periodic urination with little or no warning and little or no
brainstem micturition center.19 It is characterized by dimin- associated urgency. The urinary stream may be intermittent
ished or absent sensations of bladder lling, overactive detru- (stuttering), and the patient may perceive a sensation of incom-
sor contractions associated with urinary leakage, and a loss of plete bladder emptying or report additional urinary leakage
coordination between the detrusor and sphincter muscles soon after completion of micturition.
(detrusorsphincter dyssynergia). Functional UI is suspected when a general evaluation of the
Functional UI occurs when decits in mobility, dexterity, patient reveals signicant limitations in mobility, dexterity, or
or cognition cause or contribute to urinary leakage.20 A variety cognition. Continuous urinary leakage that is not associated
of conditions may produce functional UI in the patient receiv- with physical exertion raises the suspicion of extraurethral UI
ing palliative care. For example, neurological decits or pain associated with a stula, but it is also associated with severe
may reduce the patients ability to reach the toilet in a timely stress UI caused by intrinsic sphincter deciency.
fashion. Cognitive decits caused by malignancies or diseases A focused physical examination provides additional evi-
of the brain may predispose the patient to functional UI. In dence concerning the UI type and its severity. A general exam-
addition, sedative or analgesic medications may reduce aware- ination is used to evaluate the presence of functional UI and to
ness of bladder fullness and the need to urinate, particularly in determine the inuence of functional limitations on other
the patient who experiences nocturia. types of UI. A pelvic examination is completed to assess perineal
skin integrity, to identify the presence of obvious stulas or feasible. Alternatively, topical vitamin E preparations may
severe sphincter incompetence, and to evaluate local neuro- offer some benet if hormone replacement therapy is con-
logical function. Altered skin integrity, particularly if accom- traindicated. Fecal impaction must be relieved and constipa-
panied by a monilial rash or irritant dermatitis, indicates tion aggressively managed, using a combination of uids and
high-volume (severe) urinary leakage. In certain cases, the ber. After disimpaction, a scheduled elimination program is
source of severe leakage can be easily identied as a large s- frequently indicated. This program usually combines a peri-
tula or massive intrinsic sphincter deciency associated with staltic stimulant, such as a warm cup of coffee or tea or a sup-
a gaping (patulous) urethra. A local neurological examina- pository, and a scheduled elimination program. In addition,
tion, focusing on local sensations, pelvic oor muscle tone, stool softeners or laxatives may be used if simpler programs
and the presence of the bulbocavernosus reex, provides clues fail to alleviate constipation. Refer to Chapter 11 for a detailed
to underlying neurological problems leading to voiding dys- discussion of bowel elimination problems.
function. A number of techniques are used to manage chronic or
A bladder log (a written record of the timing of urination, established UI. Every patient should be counseled about
volume, timing of UI episodes, and uid intake) is useful lifestyle alterations that may alleviate or occasionally relieve
because it allows a semiquantitative analysis of the patterns of UI and associated LUTS.25,26 Patients are advised to avoid rou-
urinary elimination, UI, and associated symptoms. It can also tinely restricting uid intake to reduce UI, because this strat-
be used to assess uid intake or the patients response to egy only increases the risk of constipation and concentrates
prompted voiding.22 The patient is taught to record the time of the urine, irritating the bladder wall. Instead, they should be
voluntary urination, episodes of incontinence and associated counseled to obtain the recommended daily allowance for u-
factors (urgency, physical activity), and type and amount of ids (30 mL/kg or 0.5 oz/lb),27 to sip uids throughout the day,
uids consumed. This record is used to determine voiding and to avoid intake of large volumes of uids over a brief
interval, frequency of UI episodes along with associated fac- period. Patients may also be taught to reduce or avoid bladder
tors, and the total volume and types of uids consumed. irritants that increase urine production or stimulate detrusor
Recording uid intake allows the nurse to calculate the cumu- muscle tone, including caffeine and alcohol, depending on the
lative volume of uids consumed each day, as well as the goals of care and the short-term prognosis.
proportion of uids containing caffeine or alcohol, sub- Containment devices may be used to provide protection
stances that exacerbate bothersome LUTS. A 3-day bladder while treatments designed to address underlying UI are
log is strongly recommended, but valuable information can be undertaken, or they may be used for added protection if these
obtained from a 1- or 2-day document if a 3-day record is not interventions improve but fail to eradicate urine loss.28 Women
available.23 and men should be counseled about the disadvantages of
Urinalysis serves several useful purposes in the evaluation using home products and feminine hygiene pads when
of the patient with UI. The presence of nitrites and leukocytes attempting to contain urine. Specically, they should be coun-
on dipstick analysis or bacteriuria and pyuria on microscopic seled that home products, such as tissues or paper towels, are
analysis indicates a clinically relevant urinary tract infection. not designed to contain urine and feminine hygiene products
Blood in the urine may coexist with a urinary tract infection, are designed to contain menstrual ow. As an alternative,
or it may indicate signicant hematuria demanding prompt patients should be advised about products specically designed
management (see later discussion). In the patient receiving for UI, including disposable and reusable products, inserted
palliative care, glucosuria may indicate poorly controlled dia- pads, and containment undergarments.
betes mellitus causing osmotic diuresis and subsequent UI. In If the patient experiences primarily stress UI, the initial
contrast, a low specic gravity may indicate diabetes mellitus management is with behavioral methods. Pelvic oor muscle
or excessive uid intake from oral or parenteral sources. training is strongly recommended for mild to moderate stress
Other diagnostic tests are completed when indicated. For UI.29 Ideally, visual biofeedback is used to assist the patient to
example, a urine culture and sensitivity analysis is obtained if identify, isolate, and contract the pelvic oor muscles. If visual
the urinalysis reveals bacteriuria and pyuria, and an endoscopy biofeedback is not available, vaginal palpation may be used to
is indicated if signicant hematuria is present without an assist the patient to identify and contract the pelvic muscles.
obvious explanation. Urodynamic testing is indicated after This task may be supplemented by asking the patient to occa-
acute UI is excluded and if simpler examinations have failed to sionally interrupt the urinary stream during micturition, but
establish an accurate diagnosis leading to an effective plan for this maneuver should not be routinely employed because it
management. interferes with the efciency of bladder evacuation. After the
The management of UI is based on its type, the desires of patient demonstrates mastery of muscle identication, isola-
the patient and family, and the presence of complicating fac- tion, and contraction, he or she is taught the knack of pelvic
tors. Acute UI is managed by addressing its underlying cause.24 muscle contractions in response to physical exertion.30 This
A urinary tract infection should be treated with sensitivity- maneuver increases urethral closure and resistance to UI and
driven antibiotics. Similarly, medication regimens are altered relieves or sometimes corrects stress UI.
as feasible if they produce or exacerbate UI. Atrophic urethri- Medications also may be used to treat stress UI in selected
tis may be managed with topical hormone replacement if cases.31 Pseudoephedrine, an -adrenergic agonist, is available in
over-the-counter preparations (e.g., Sudafed SA). Imipramine, a 2 to 3 hours, depending on the urinary frequency documented
tricyclic antidepressant with both -adrenergic effects that on a bladder log obtained during assessment) and taught
increase urethral resistance and anticholinergic actions, may be urge-suppression skills. Similarly, patients whose urge UI is
useful for patients who experience stress UI or mixed stress and not managed adequately by behavioral methods should be
urge UI symptoms.32 Although these agents often alleviate stress counseled about anticholinergic medications before place-
UI, their potential benets must be weighed carefully against ment of an indwelling catheter is recommended.
their side effects. In addition to enhancing urethral sphincter Intermittent catheterization or an indwelling catheter may
closure, -adrenergic agonists may cause tachycardia, restless- be used in selected cases if urge UI is severe and proves refrac-
ness, insomnia, and hypertension. Imipramine may produce tory to other treatments. It is also indicated if urge UI is com-
these side effects as well as dysrhythmias and anticholinergic plicated by clinically relevant urinary retention or if the
effects, including dry mouth, blurred vision, ushing, and heat patient is near death and immobile.
intolerance. It also may affect the central nervous system and Because reex UI is typically associated with diminished
may be associated with short-term memory impairment, hallu- sensations of bladder lling, it is not usually responsive to
cinations, and nightmares. These side effects may be particularly behavioral treatments.38 A minority of patients with reex UI
signicant in aged patients and in those with preexisting cogni- retain the ability to urinate spontaneously, but most cases
tive defects related to a primary tumor or disease. must be managed with an alternative program. For men, a
An indwelling catheter may be indicated if intrinsic sphinc- condom catheter may be used to contain urine. A condom that
ter deciency and subsequent stress UI are severe. Although is latex free is typically selected. In some patients, an -
not usually indicated, a larger catheter size may be required, to adrenergic blocking agent such as terazosin, doxazosin, tamsu-
prevent urinary leakage (bypassing) around the catheter.33 A losin, or alfuzosin is administered, to minimize obstruction
detailed discussion of catheter management is provided later caused by detrusorsphincter dyssynergia.39 Intermittent
in this chapter. catheterization is encouraged whenever feasible. The patient
Overactive bladder dysfunction, with or without urge UI, is and at least one signicant other should be taught a clean
also managed by behavioral or pharmacological modalities (or intermittent catheterization technique. For the patient with
both) whenever possible.34 In addition to the lifestyle and reex UI, an anticholinergic medication is usually required in
dietary factors discussed earlier, biofeedback methods are used addition to catheterization, to prevent UI. If intermittent
to teach the patient to identify and contract the pelvic muscles. catheterization is not feasible, an indwelling catheter is used to
These skills are applied to a technique called urge suppression, manage reex UI. Although the indwelling catheter is associ-
which is used to inhibit specic episodes of urgency before UI ated with serious long-term complications and is avoided in
occurs. When a sudden urge to urinate occurs, the patient is patients with spinal cord injury and a signicant life expectancy,
taught to stop, tighten the pelvic muscles in rapid succession it is a more attractive alternative for the patient receiving pal-
using several quick ick contractions until the urge has sub- liative care.
sided, and proceed to the bathroom at a normal pace. The Functional UI is treated by minimizing barriers to toileting
patient also may be taught relaxation or other distraction and the time required to prepare for urination.40,41 Strategies
techniques to cope with specic urge episodes. Behavioral designed to remove barriers to toileting are highly individual-
methods are particularly helpful for the patient who is at risk ized and are best formulated with the use of a multidiscipli-
for falling and related injuries. nary team, combining nursing with physical and occupational
Anticholinergic or antispasmodic medications also may be therapy as indicated. Strategies used to maximize mobility and
used to manage urge UI. A variety of agents are available, but access to the toilet include using assistive devices such as a
three relatively new drugs, extended-release tolterodine (Detrol walker or wheelchair, widening bathroom doors, adding sup-
LA), extended-release oxybutynin (Ditropan XL), and transport bars, and providing a bedside toilet or urinal. The time
dermal oxybutynin (Oxytrol) are preferred because they are required for toileting may be reduced by selected alterations in
associated with fewer side effects when compared to other the patients clothing, such as substituting tennis shoes with
anticholinergic medications (Table 143).35,36 Anticholinergic good traction for slippers or other footwear with slick soles
medications work by increasing the functional bladder capac- and substituting Velcro- or elastic-banded clothing for articles
ity, inhibiting overactive detrusor contractions, and reducing with multiple buttons, zippers, or snaps.
voiding frequency. Their principal side effect is dry mouth, If the patient has signicant contributing cognitive disor-
which can be severe and can interfere with appetite and masti- ders, functional UI is usually managed by a prompted voiding
cation.31 Other side effects include blurred vision, constipa- program.42,43 Baseline evaluation includes a specialized blad-
tion, ushing, heat intolerance, and cognitive effects such as der log, which is completed over a 48- to 72-hour period. The
nightmares or altered short-term memory. caregiver is taught to assist the patient to void on a xed sched-
Although antispasmodic medications are often viewed as ule, usually every 2 to 3 hours. The caregiver is taught to help
an alternative to behavioral therapies, they are better viewed as the patient move to the toilet and prepare for urination; the
complementary modalities.37 Specically, all patients who caregiver also uses this opportunity to determine whether the
wish to use anticholinergic medications for urge UI should be pad incontinence brief reveals evidence of UI since the previous
advised to void according to a timed schedule (usually every scheduled toileting. Patients who are successful, dry, and able
Table 143
Pharmacologic Management: Agents Used to Decrease Bladder Contractility
Drug Action Dosage Adverse Effects Nursing Considerations
Extended Release and Transdermal Agents

Extendedrelease Antimuscarinic: Usual adult Dry mouth May administer
tolterodine (Detrol LA), inhibits overactive dosage: 4 mg (usually mild to at bedtime to
2 mg and 4 mg capsules detrusor contractions, capsule taken moderate), minimize dry
reduces frequency of once daily ushing, mouth;
urge UI episodes and constipation, dry mouth is less
voiding frequency, drowsiness, prevalent and less
increases functional blurred vision severe when
bladder capacity compared to classic
anticholinergic agents;
all antimuscarinic
and anticholinergic
agents are
contraindicated in
patients with
narrow-angle
glaucoma
Trospium Antimuscarinic Usual adult Dry mouth Similar to
chloride actions, similar to dosage: 20 mg (usually mild to tolterodine
(Sanctura), tolterodine taken twice daily moderate),
20 mg tablets constipation,
headache
Extended-release Anticholinergic: Usual adult dosage: Dry mouth Osmotic releasing
oxybutynin inhibits overactive 10 mg tablet taken (usually mild to system comprises
(Ditropan XL), detrusor contractions, once daily, may moderate), ushing, skeleton, active
5, 10, 15 mg tablets reduces frequency of titrate to 30 mg daily constipation, drug, and small
urge UI episodes and Child: 5 mg tablet drowsiness, osmotic sponge;
voiding frequency, once daily blurred vision advise patient that
increases functional skeleton is excreted in
bladder capacity stool 12 days after
swallowing; dry mouth
less severe than that
associated with
immediate-release
formulation of
oxybutynin; tablets
must be swallowed
whole and cannot be
chewed, divided,
or crushed
Transdermal Anticholinergic: Apply 1 patch twice Dry mouth (usually), Teach patient to
oxybutynin (Oxytrol) same as above weekly (every 3.5 days) ushing, constipation, rotate patch placement
3.9 mg matrix patch drowsiness, blurred to reduce risk of
vision; skin irritation skin irritation;
(pruritus) at site advise patient to apply
of patch application patch to clean, dry
skin and avoid applying
lotions or oils before
application; counsel
patient to apply barrier
cream if skin
irritation occurs
(continued )
Table 143
Pharmacologic Management: Agents Used to Decrease Bladder Contractility (continued )
Drug Action Dosage Adverse Effects Nursing Considerations
Classic Anticholinergics
Propantheline Anticholinergic: Child: 0.5 mg/kg Dry mouth, Dry mouth may
(Pro-Banthine) same as above bidqid ushing, be moderate to
Adult: 7.5 mg, diminished severe
up to 30 mg bidqid sweating,
constipation,
drowsiness,
increased heart rate,
behavioral changes,
blurred vision
Immediate release Anticholinergic: Child < 5 y: Age Same as above Dry mouth may be
oxybutynin same as above in years = mL/dose moderate to severe;
(Ditropan) bidtid available in liquid
7.515 mg tablets Child > 5 y: 0.2 mg/kg formulation for
bidqid children unable to
Adult: 2.55 mg bidqid swallow pill
Geriatric:
2.55 mg daily to bid
Hyoscyamine, Anticholinergic: Child: 212 y: Same as above Available in elixir and
oral tablets. same as above 1/21 tablet q4h extendedrelease
(Levsin, Levbid), Child: 12 y: formulation
hyoscyamine 12 tablet q4h (administered bid)
sublingual (Levsin SL)
0.1250.375 mg
tablets
Dicyclomine Antimuscarinic, Adult: 2040 mg qid Same as above
hydrochloride anticholinergic:
(Bentyl), 10 mg capsules same as above
20 mg tablets, 10 mg/5 mL
solution
Flavoxate (Urispas), Direct spasmolytic Adult (> 12 y): Dry mouth, ushing,
100 mg tablets effect on smooth 100200 mg tidqid diminished sweating,
muscle constipation,
drowsiness, increased
heart rate, behavioral
changes, blurred
vision
Belladonna and Antimuscarinic, Adult: 1 suppository Dry mouth, Moisten
opium suppository, spasmolytic q46h drowsiness, dizziness, suppository before
16.2 mg belladonna constipation, insertion; advise
and 30 or 60 mg blurred vision, patient to place
opium sensitivity to light suppository adjacent to
rectal wall and not in
fecal mass
Source: References 3437, 39.
to urinate with prompting on more than 50% of attempts Because extraurethral UI is caused by a stulous tract and
completed during this trial period are considered good candi- produces continuous urinary leakage, it must be managed ini-
dates for an ongoing prompted voiding regimen; those who tially by containment devices and preventive skin care.3 The
are unsuccessful are considered poor candidates and are man- type of containment device depends on the severity of the UI;
aged by alternative methods, including indwelling catheteriza- an incontinent brief is frequently required. Preventive skin care
tion in highly selected cases. consists of routine cleansing with water and an incontinence
cleanser or mild soap, followed by thorough drying using a Urinary Retention

soft towel and hair dryer on the low (cool) setting. Addition-
ally, a skin barrier may be applied if altered skin integrity is Urinary retention is the inability to empty the urinary bladder
particularly likely. despite micturition.47 Acute urinary retention is an abrupt and
In some cases, the stula may be closed by conservative (non- complete inability to void. Patients are almost always aware of
surgical) means. An indwelling catheter is inserted, and the s- acute urinary retention because of the increasing suprapubic
tula is allowed to heal spontaneously.44 This intervention is most discomfort produced by bladder lling and distention and the
likely to work for a traumatic (postoperative) stula. If the stula associated anxiety. Chronic urinary retention occurs when the
is a result of an invasive tumor or radiation therapy, it is not as patient is partly able to empty the bladder by voiding but a sig-
likely to heal spontaneously. In such cases, cauterization and b- nicant volume of urine remains behind. Although no absolute
rin glue may be used to promote closure.45 Alternatively, a sus- cutoff point for chronic urinary retention can be dened, most
pension containing tetracycline may be prepared and used as a clinicians agree that a residual volume of 200 mL or more
sclerosing agent. The adjacent skin is prepared by applying a skin deserves further evaluation.
barrier (e.g., a petrolatum-based ointment) to protect it from the Urinary retention is caused by two disorders, bladder outlet
sclerosing agent. Approximately 5 to 10 mL of the tetracycline obstruction or decient detrusor contraction strength. Bladder
solution is injected into the stula by a physician, and the lesion outlet obstruction occurs when intrinsic or extrinsic factors
is monitored for signs of scarring and closure. If UI persists for compress the urethral outow tract. For the patient receiving
15 days or longer, the procedure may be repeated under the physi- palliative care, malignant tumors of the prostate, urethra, or
cians direction. For larger stulas or those that fail to respond to bladder may produce anatomic obstruction of the urethra,
conservative measures, surgical repair is undertaken if feasible. whereas lesions affecting spinal segments below the brainstem
micturition center but above the sacral spine cause functional
obstruction associated with detrusorsphincter dyssynergia.48
o] In addition, brachytherapy may cause inammation and con-
Assessment and Management of Bothersome LUTS: gestion of the prostate, producing a combination of urinary
Urinary Stasis or Retention retention and overactive bladder dysfunction.49 In the patient
receiving palliative care, decient detrusor contraction strength
A precipitous drop or sudden cessation of urinary outow is a usually occurs as a result of denervation or medication. Alterna-
serious urinary system complication that may indicate olig- tively, it may result from histological damage to the detrusor
uria or anuria (failure of the kidneys to lter the blood and muscle itself, usually caused by radiation therapy or by detrusor
produce urine), urinary stasis (blockage of urine transport decompensation after prolonged obstruction. Neurological
from the upper to lower urinary tracts), or urinary retention lesions commonly associated with decient detrusor contrac-
(failure of the bladder to evacuate itself of urine). The follow- tion strength include primary or metastatic tumors affecting
ing sections review the pathophysiology and management of the sacral spine or spinal column, multiple sclerosis lesions,
urinary stasis or acute postrenal failure caused by bilateral tertiary syphilis, and diseases associated with peripheral poly-
ureteral obstruction and urinary retention. neuropathies, such as advanced-stage diabetes mellitus or alco-
holism. Poor detrusor contraction strength also may occur as a
Obstruction of the Upper Urinary Tract result of unavoidable denervation from large abdominopelvic
surgeries, such as abdominoperineal resection or pelvic exen-
Upper urinary tract stasis in the patient receiving palliative teration.
care is usually caused by obstruction of one or both ureters.46
The obstruction is typically attributable to a primary or Assessment and Management of Upper Tract
metastatic tumor, and most arise from the pelvic region. In Obstruction and Urinary Retention
men, prostatic cancer is the most common cause, whereas
pelvic (cervical, uterine, and ovarian) malignancies produce Accurate identication of the cause of a precipitous drop in
most ureteral obstructions in women. In addition to malig- urine output is essential, because the management of upper uri-
nancies, retroperitoneal brosis secondary to inammation or nary tract obstruction and of urinary retention are different.
radiation may obstruct one or both ureters. Unless promptly Because both conditions cause a precipitous drop in urinary out-
relieved, bilateral ureteral obstruction leads to acute renal fail- put, the LUTS reported by the patient may be similar. Both may
ure with uremia and elevated serum potassium, which can cause difculty initiating urination and a dribbling, intermittent
cause life-threatening arrhythmias. ow, or both may produce few or no bothersome symptoms in
When a single ureter is obstructed, the bladder continues to some instances. However, upper urinary tract obstruction is
ll with urine from the contralateral (unobstructed) kidney. more likely to produce ank pain, whereas acute urinary reten-
In this case, urinary stasis produces symptoms of ureteral or tion is more likely to produce discomfort localized to the supra-
renal colic. Left untreated, the affected kidney is prone to acute pubic area. The ank pain associated with upper urinary tract
failure and infection, and it may produce systemic hyperten- obstruction is usually localized to one or both anks, although it
sion because of increased renin secretion. may radiate to the abdomen and even to the labia or testes if the
lower ureter is obstructed. Its intensity varies from moderate to ureteral stent may not be feasible and a percutaneous nephros-
intense. It typically is not relieved by changes in position, and the tomy tube may be substituted. The procedure may be done in
patient is often restless. The discomfort associated with acute an endoscopy suite or an interventional radiographic suite
urinary retention is typically localized to the suprapubic area or under local and systemic sedation or anesthesia. Unlike the
the lower back. The patient with acute urinary retention also ureteral stent that drains into the bladder, the nephrostomy
may feel restless, although this perception is usually attributable tube is drained via a collection bag. The patient and family are
to the growing and unfullled desire to urinate. taught to monitor urinary output from the bag and to secure
A focused physical examination assists the nurse to differ- the bag to the lower abdomen or leg in a manner that avoids
entiate urinary retention from upper urinary tract obstruc- kinking. The success of placement of a ureteral stent or nephros-
tion. The patient with bilateral ureteral obstruction and acute tomy tube is measured by the reduction in pain and in serum
renal failure may have systemic evidence of uremia, including creatinine and potassium concentrations, indicating reversal
nausea, vomiting, and hypertension. In some cases, obstruc- of acute renal insufciency.
tion may by complicated by pyelonephritis, causing a fever Acute urinary retention is managed by prompt placement
and chills. An abdominal assessment also should be per- of an indwelling urethral catheter.47 The patient is closely
formed. Physical assessment of the patient with upper uri- monitored as the bladder is initially drained, because of the
nary tract obstruction reveals a nondistended bladder, whereas very small risk of brisk diuresis associated with transient
the bladder is grossly distended and may extend above the hyperkalemia, hematuria, hypotension, and pallor.50 This risk
umbilicus in the patient with acute urinary retention. Blood may be further reduced by draining 500 mL, interrupted by a
analysis reveals an elevated serum creatinine, blood urea brief period during which the catheter is clamped (approxi-
nitrogen, and potassium in the patient with bilateral ureteral mately 5 minutes), and followed by further drainage until the
obstruction, but these values are typically normal in the retained urine is evacuated; or by draining the bladder slowly
patient with urinary retention or unilateral ureteral obstruc- using a small-bore tube or intravenous set. The catheter is left
tion.46 Ultrasonography of the kidneys and bladder reveals in place for up to 1 month; this allows the bladder to rest and
ureterohydronephrosis above the level of the obstruction or recover from the overdistension typical of acute urinary
bladder distention in the patient with acute urinary retention. retention. After this period, the bladder may be slowly lled
In contrast to the patient with ureteral obstruction or with saline, preferably heated to body temperature, and the
acute urinary retention, many patients with chronic retention catheter removed.51 The patient is allowed to urinate, and the
remain unaware of any problem, despite large residual vol- voided volume is measured. This volume is compared with
umes of 500 mL or more.47 When present, LUTS vary and may the volume infused, to estimate the residual volume; or a blad-
include feelings of incomplete bladder emptying, a poor force der ultrasound study can be completed to assess the residual
of stream, or an intermittent urinary stream. Patients are most volume. If the patient is able to evacuate the bladder success-
likely to complain of diurnal voiding frequency and excessive fully, the catheter is left out and the patient is taught to recog-
nocturia (often arising four times or more each night), but nize and promptly manage acute urinary retention. If the
these symptoms are not unique to incomplete bladder empty- patient is unable to urinate effectively, the catheter may
ing. Although acute renal failure is uncommon in the patient be replaced or an intermittent catheterization program may be
with chronic urinary retention, the serum creatinine concen- initiated, depending on the cause of the retention and the
tration may be elevated, indicating renal insufciency attrib- patients ability to perform self-catheterization.
utable to lower urinary tract pathology. The patient with chronic urinary retention may be man-
Obstruction of the upper urinary tract is initially managed aged by behavioral techniques, intermittent catheterization, or
by reversal of uid and electrolyte imbalances and prompt an indwelling catheter.47 Behavioral methods are preferred
drainage.46 Urinary outow can be reestablished by insertion because they are noninvasive and not associated with any risk
of a ureteral stent (drainage tube extending from the renal of adverse side effects. Scheduled toileting with double voiding
pelvis to the bladder) via cystoscopy. A ureteral stent is pre- may be used in the patient with low urinary residual volumes
ferred because it avoids the need for a percutaneous puncture (approximately 200 to 400 mL). The patient is taught to attempt
and drainage bag. In the case of bilateral obstruction, a stent is voiding every 3 hours while awake and to double void (urinate,
placed in each ureter under endoscopic guidance; a single wait for 3 to 5 minutes, and urinate again before leaving the
stent is placed if unilateral obstruction is diagnosed. The bathroom). Higher urinary residual volumes and clinically
patient is advised that the stents will drain urine into the blad- relevant complications caused by urinary retention, including
der. However, because the stents often produce bothersome urinary tract infection or renal insufciency, are usually man-
LUTS, the patient is counseled to ensure adequate uid intake aged by intermittent catheterization or an indwelling catheter.
while avoiding bladder irritants, including caffeine and alco- Many factors enter into the choice between intermittent
hol. In certain cases, an anticholinergic medication may be and indwelling catheterization, including the desires of the
administered to reduce the irritative LUTS or bladder spasms patient and family, the presence of obstruction or low bladder
that sometimes are associated with a ureteral stent. wall compliance (e.g., a small or contracted bladder), and the
If the ureter is signicantly scarred because of radiation prognosis. From a purely urological perspective, intermittent
therapy or distorted because of a bulky tumor, placement of a catheterization is preferable because it avoids long-term
complications associated with an indwelling catheter, includ- kinking of the drainage bag above the urinary bladder. The
ing chronic bacteriuria, calculi, urethral erosion, and catheter patient and family are also advised to monitor for signs and
bypassing. However, an indwelling catheter may be preferable symptoms of clinically relevant infection, including fever, new
in a palliative care setting when the urethra is technically dif- hematuria, or urinary leakage around the catheter. They are
cult to catheterize, the patient has a small capacity with low also advised that bacteriuria is inevitable, even with the use of
bladder wall compliance, the patient is experiencing signi- catheters containing a bacteriostatic coating, and that only clin-
cant pain or limited upper extremity dexterity that interferes ically relevant (symptomatic) urinary tract infections should be
with the ability to effectively evacuate the bladder via micturi- treated.
tion, or UI is complicated by retention.
9=
Managing the Indwelling Catheter case study
DY, a Patient with an Indwelling Catheter,
Although the decision to insert a catheter may be directed by a
Hematuria, and Clot Retention
physician or nurse practitioner, decisions concerning catheter
size, material of construction, and drainage bag are usually DY is a 69-year-old white woman with type 2 diabetes melli-
made by the nurse.33,52,53 A relatively small catheter is typically tus, hypertension, and idiopathic cirrhosis with a mild coagu-
sufcient to drain urine from the bladder. A 14- to 16-Fr catheter lopathy. She was diagnosed with endometrial cancer at age 65
is adequate for men and a 12- to 14-Fr catheter is usually ade- years and treated with external beam radiation therapy and
quate for women. Larger catheters (18 to 20 Fr) are reserved for interstitial radium seed implants. She began noting LUTS,
patients with signicant intrinsic sphincter deciency, hema- including frequency, urgency, and dysuria, and she developed
turia, or sediment in the urine. Silastic, Teon-coated tubes are gross hematuria with clots approximately 3 years after com-
avoided if the catheter is expected to remain in place more than pleting radiation therapy. She was initially treated with con-
2 to 3 days. Instead, a silicone- or hydrophilic, low-friction tinuous bladder irrigation, intravesical alum, and
catheter is selected because of its reduced afnity for bacterial prostaglandin instillations with minimal response. She
adherence and increased comfort. underwent a cystoscopy for evacuation of blood clots. At that
In men, water-soluble lubricating jelly should be injected time, random bladder biopsies were obtained, which revealed
into the urethra before catheterization, and in women such chronic inammation, hemorrhage, hemosiderin-laden
jelly should be liberally applied to the urethral meatus and macrophages, and vascular telangiectasia. There was no evi-
adjacent mucosa before catheterization. A lubricant contain- dence of malignancy. Several areas of bleeding were cauter-
ing 2% Xylocaine may be used to reduce the discomfort asso- ized. Hyperbaric oxygen therapy was attempted, but the
ciated with catheter insertion. The catheter is inserted to the patient did not tolerate the procedure well and refused fur-
bifurcation of the drainage port. A 5-mL balloon is lled with ther treatments. Over the next 3 months, she continued to
10 mL to ll the dead space in the port while ensuring proper have intermittent episodes of gross hematuria and progres-
ination, and the inated balloon is gently withdrawn to near sive weakness.
the bladder neck. DY again sought assistance when she experienced a partic-
A drainage bag that provides adequate storage volume and ularly severe episode of hematuria with clot retention and a
reasonable concealment under clothing should be chosen. A hematocrit of 12%. She was admitted to hospital for transfu-
bedside bag is preferred for bed-bound patients and for sions and management of recurring hemorrhagic cystitis. A
overnight use in ambulatory persons. The bedside bag should voiding cystourethrogram (VCUG) was obtained on admis-
hold at least 2000 mL, should contain an antireux valve to sion, and she was treated with transfusions and continuous
prevent retrograde movement of urine from bag to bladder, bladder irrigations until her sixth hospital day, when she was
and should include a drainage port that is easily manipulated taken to the operating room for a cystoscopy, performed
by the patient or care provider. In contrast, a leg bag is pre- under anesthesia. Before the cystoscopy, Vaseline gauze was
ferred for ambulatory patients. It should hold at least 500 mL, placed on the perineal skin. Because left vesicoureteral reux
should be easily concealed under clothing, and should attach was noted on the VCUG, a Fogarty balloon was passed into
to the leg by elastic straps or a cloth pocket rather than latex the distal left ureter and inated to occlude the ureter. The
straps, which are likely to irritate the underlying skin. bladder was lled, and her capacity was determined to be
The patient is taught to keep the drainage bag level with or 300 mL. A total of 150 mL of a 1% formalin solution was
below the symphysis pubis and to secure the catheter so that slowly infused into the bladder and retained for 20 minutes.
unintentional traction against the thigh is avoided. Typically, The bladder was then drained and irrigated with saline. A
the patient is encouraged to drink at least the recommended three-way indwelling catheter was placed, and continuous
daily allowance of uids, and to drink additional uids if bladder irrigation was restarted. Her hematuria partially
hematuria or sediment is present. However, these recommen- resolved, and she returned to the operating room 3 days later
dations may be altered depending on the clinical setting and for instillation of 150 mL of a 3% formalin solution. The
the patients short-term prognosis. The catheter is routinely hematuria resolved after this second instillation, and the con-
monitored for blockage caused by blood clots, sediment, or tinuous bladder irrigation was discontinued within 24 hours.
At the time of discharge the next day, she was voiding well result of catheter occlusion by blood clots, sediment, or kink-
and her urine remained free of hematuria. Postprocedure ing; or they may be associated with a needlessly large catheter,
pain was managed by a combination of urinary analgesics, an improperly inated retention balloon, or hypersensitivity
such as phenazopyridine (Pyridium), and an oral narcotic to the presence of the catheter or stent or to principal con-
analgesic (oxycodone). Both medications were discontinued stituents. Other risk factors include pelvic radiation therapy,
1 week after the nal instillation. chemotherapeutic agents (particularly cyclophosphamide),
Four months later, DY presented with recurrent dysuria, intravesical tumors, urinary tract infections, and bladder or
hematuria, and clots requiring transfusion and repeated cys- lower ureteral calculus.
toscopy with instillation of a 1% formalin solution. She Bladder spasms are managed by altering modiable factors
responded to this treatment and was discharged 2 days after or by administering anticholinergic medications if indicated
treatment. (Table 144). Changing the urethral catheter may relieve blad-
o] der spasms. An indwelling catheter is usually changed every
4 weeks or more often because of the risk of blockage and
This case demonstrates the risk of recurrent hemorrhagic
encrustation with precipitated salts, hardened urethral secre-
cystitis after treatment with a combination of external beam
tions, and bacteria.
and interstitial radiotherapy. This patients coagulopathy may
In addition to changing the catheter, the nurse should con-
have exacerbated the risk for signicant hematuria. In this
sider altering the type of catheter. For example, a catheter with a
case, the initial episode of hematuria occurred 3 years after
smaller French size may be inserted if the catheter is larger than
therapy, and it recurred over a period of 22 months despite
16 Fr, unless the patient is experiencing a buildup of sediment
treatment with continuous bladder irrigation, cystoscopy with
causing catheter blockage. Similarly, a catheter with a smaller
electrocauterization, hyperbaric oxygen, intravesical alum,
retention balloon (5 mL) may be substituted for a catheter with
and prostaglandin. Ultimately, the condition failed to respond
a larger balloon (30 mL), to reduce irritation of the trigone and
to intravesical instillation of a 1% formalin solution, but it did
bladder neck. Use of a catheter that is constructed of hydrophilic
respond to a 3% solution. Nonetheless, the patient experi-
polymers or latex-free silicone may relieve bladder spasms and
enced a single recurrence within a period of 4 months, which
diminish irritative LUTS because of their greater biocompatibil-
responded to a single instillation of a 1% formalin solution.
ity when compared with Teon-coated catheters.
She remained symptom-free at 1 year.
Instruction about the position of the catheter, drainage
Fortunately, life-threatening blood loss is a rare complica-
tubes, and bags is reinforced; and the drainage tubes and urine
tion of hemorrhagic cystitis and bladder tumors. Treatment
are assessed for the presence of sediment or clots likely to
usually begins with bladder irrigation, evacuation of clots, and
obstruct urinary drainage. In certain cases, such as when the
intravesical instillations such as alum or silver nitrate and pro-
urethral catheter produces signicant urethritis with purulent
gresses to therapy with intravesical prostaglandin and forma-
discharge from the urethra, a suprapubic indwelling catheter
lin. Because of the signicant risk of toxicity if formalin is
may be substituted for the urethral catheter. A suprapubic
absorbed, a Fogarty catheter must be introduced to prevent
catheter also may be placed in patients who have a urethra that
reux of formalin into the upper urinary tract and renal
is technically difcult to catheterize, or who tend to encrust
capillaries. Alternatives include cystoscopy with electrical cau-
the catheter despite adequate uid intake. Once established,
terization or laser coagulation of individual bleeding sites.
these catheters are changed monthly, usually in the outpatient,
Selective embolization or ligation of the hypogastric artery,
home care, or hospice setting.
palliative cystectomy, or radical nephrectomy may be required
Patients with indwelling catheters who are prone to rapid
as a last resort.
encrustation and blockage present a particular challenge for
the palliative care nurse. Options for management include fre-
quent catheter changes (sometimes as often as one or two
o] times per week) and irrigation of the catheter with a mildly
Assessment and Management of Bothersome acidic solution such as Renacidin. Irrigation may be com-
LUTS: Bladder Spasm pleted once or several times weekly, and a small volume of
solution is used (approximately 15 mL) to provide adequate
Irritative LUTS, including a heightened sense of urgency and irrigation of the catheter while avoiding irritation of the blad-
urethral discomfort, are common in patients with a long-term der epithelium.54
indwelling catheter or ureteral stent. In certain cases, these Bladder spasms also may indicate a clinically relevant uri-
irritative symptoms are accompanied by painful bladder spasms. nary tract infection. The catheter change provides the best
Bladder spasms are characterized by intermittent episodes of opportunity to obtain a urine specimen. This specimen should
excruciating, painful cramping localized to the suprapubic be obtained from the catheter and never from the drainage
region. They are caused by high-pressure, overactive detrusor bag. Although bacteriuria is inevitable with a long-term
contractions in response to a specic irritation.46 Urine may indwelling catheter, cystitis associated with painful bladder
bypass (leak around) the catheter or cause urge UI in the spasms should be managed with sensitivity-guided antibiotic
patient with a stent. Painful bladder spasms may be the direct therapy.
Table 144
Conditions Associated with Detrusor Overactivity in the Patient Receiving Palliative Care
Condition Disorder
Neurological lesions above the (Overactive bladder, with or without urge UI)
brainstem micturition center Posterior fossa tumors causing intracranial pressure
increased
Primary or metastatic tumors Cerebrovascular accident (stroke)
of the spinal segments Diseases affecting the brain, including multiple
sclerosis, AIDS
Neurological lesions below Reex UI with vesicosphincter dyssynergia
the brainstem neicturition Primary or metastatic tumors of the spinal cord
center but above sacral Tumors causing spinal cord compression
spinal segments because of their effects on the spinal column
Systemic diseases directly affecting the
spinal cord, including advanced-stage
AIDS, transverse myelitis, Guillain-Barr
syndrome
Inammation of the bladder (Overactive bladder, with or without urge UI)
Primary bladder tumors, including
papillary tumors or carcinoma in situ
Bladder calculi (stones)
Radiation cystitis, including brachytherapy
Chemotherapy-induced cystitis
Bladder outlet obstruction (Overactive bladder usually without urge UI)
Prostatic carcinoma
Urethral cancers
Pelvic tumors causing urethral compression
AIDS, acquired immunodeciency syndrome; UI, urinary incontinence.
The patient is taught to drink sufcient uids to meet imaging studies. His prostate cancer continued to progress
or exceed the recommended daily allowance of 30 mL/kg despite maximal androgen ablation therapy, radiation ther-
(0.5 oz/lb) whenever feasible. Reduced consumption of bever- apy, and several courses of chemotherapy. Recently, he has
ages or foods containing bladder irritants, such as caffeine or experienced progressive difculty urinating, recurring
alcohol, also may alleviate bladder spasms in some cases. episodes of hematuria, and an episode of acute urinary reten-
If conservative measures or catheter modication fail to tion that required placement of an indwelling catheter for
relieve bladder spasms, an anticholinergic medication may be 2 weeks. Attempts to discontinue the indwelling catheter were
administered. These medications work by inhibiting the over- unsuccessful, and his postvoid residual urine volumes
active contractions that lead to painful bladder spasms. Table remained elevated at 500 to 670 mL. A number of bladder
144 summarizes the dosage, administration, and nursing management options were discussed with the patient and his
considerations of common anticholinergic medications used spouse, and both agreed that they wished to leave an
to manage bladder spasms, as well as urge or reex UI. indwelling catheter in place, to avoid the risk for recurring
episodes of acute urinary retention and accompanying LUTS.
Initially, BA managed the catheter well, but he subse-
9=
quently developed multiple painful bladder spasms, some-
case study
times associated with catheter bypassing (leakage of urine
BA, a 76-Year-Old Man with Advanced Prostate Cancer
around the catheter). A urine culture was obtained which
BA is a 76-year-old African-American man who presented with revealed > 105 colony-forming units of Proteus mirabilis,
stage T4, Gleason grade 9, adenocarcinoma of the prostate pyuria, and microscopic hematuria. He was treated with
gland at the time of initial evaluation. The initial management a 10-day course of levooxacin based on sensitivity reports.
was by androgen deprivation therapy for 30 months, but BA Within 3 days, the frequency and severity of his bladder
then presented with a rising prostate-specic antigen (PSA) spasms had diminished to two to three episodes per day, and
level and evidence of several metastatic lesions on follow-up leakage around the catheter had stopped entirely. A regimen
of Ditropan XL, 10 mg qd, was then started to alleviate resid- cystitis related to cancer, infection (viral, bacterial, fungal, or
ual bladder spasms. Telephone follow-up 2 weeks later parasitic), chemical toxins (primarily from oxazaphosphorine
revealed that his spasms had stopped altogether. alkylating agents), radiation, anticoagulation therapy, or an
o] idiopathic response to anabolic steroids or another agent.56
Radiation and chemotherapeutic agents account for most
cases of moderate to severe hematuria.
o] Radiation cystitis is typically associated with pelvic radio-
Hematuria therapy for cancer of the uterus, cervix, prostate, rectum, or
lower urinary tract. Most of these patients (80% to 90%) expe-
Hematuria is dened as the presence of blood in the urine. It rience bothersome LUTS (diurnal voiding frequency, urgency,
results from a variety of renal, urological, and systemic pro- and dysuria) that reach their maximum intensity near the end
cesses. When gross hematuria was present as an initial com- of treatment and subside within 6 to 12 weeks after cessation
plaint or nding in an adult, further evaluation in one study therapy. However, about 10% to 20% of patients experience
revealed that 23% of patients had an underlying malig- clinically relevant cystitis that persists well beyond the end of
nancy.53,55 In the palliative care setting, hematuria occurs more treatment or occur months or even years after radiother-
commonly after pelvic irradiation or chemotherapy or as the apy.58,59 In addition to bothersome LUTS, these patients expe-
result of a major coagulation disorder or a newly diagnosed or rience pain and hematuria caused by mucosal edema, vascular
recurring malignancy. telangiectasia, and submucosal hemorrhage. They also may
Hematuria is divided into two subtypes according to its experience interstitial and smooth muscle brosis with low
clinical manifestations. Microscopic hematuria is character- bladder compliance and markedly reduced bladder capacity.56
ized by hemoglobin or myoglobin on dipstick analysis and more Severe brosis associated with radiotherapy can lead to moder-
than 3 to 5 red blood cells (RBCs) per high-power eld (hpf ) ate to severe hematuria, as well as upper urinary tract distress
under microscopic urinalysis, but the presence of blood (ureterohydronephrosis, vesicoureteral reux, pyelonephritis,
remains invisible to the unaided eye. Macroscopic (gross) and renal insufciency) caused by chronically elevated intrav-
hematuria is also characterized by dipstick and microscopic esical pressures.
evidence of RBCs in the urine, as well as a bright red or brown- Chemotherapy-induced cystitis usually occurs after treat-
ish discoloration that is apparent to the unaided eye. ment with an oxazaphosphorine alkylating agent, such as
In the context of palliative care, hematuria can also be sub- cyclophosphamide or isophosphamide.56 A urinary metabolite
divided into three categories depending on its severity.56 Mild produced by these drugs, acrolein, is believed to be responsi-
hematuria is microscopic or gross blood in the urine that does ble. Hemorrhage usually occurs during or immediately after
not produce obstructing clots or cause a clinically relevant treatment, but delayed hemorrhage may occur in patients
decline in hematocrit or hemoglobin. Moderate and severe undergoing long-term therapy. The effects on the bladder
hematuria are associated with more prolonged and high- mucosa are similar to those described for radiation cystitis.
volume blood losses; hematuria is classied as moderate if
6 units of blood is required to replace blood lost within the Assessment
urine and as severe if 6 units is required. Both moderate and
severe hematuria may produce obstructing clots that lead to Because bleeding can occur at any level in the urinary tract
acute urinary retention or obstruction of the upper urinary from the glomerulus to the meatus, a careful, detailed history
tract. is needed to identify the source of the bleeding and to initiate
an appropriate treatment plan. The patient should be asked
Pathophysiology whether the hematuria represents a new, persistent, or recurrent
problem. This distinction is often helpful, because recurrent or
Hematuria originates as a disruption of the endothelial persistent hematuria may represent a benign predisposing con-
epithelial barrier somewhere within the urinary tract.57 dition, whereas hematuria of new or recent onset is more
Inammation of this barrier may lead to the production of likely to result from conditions related to the need for pallia-
cytokines, with subsequent damage to the basement mem- tive care. A review of prior urinalyses also may provide clues to
brane and passage of RBCs into the urinary tract. Laceration the onset and history of microscopic hematuria in particular.
of this barrier may be caused by an invasive tumor, iatrogenic The patient is queried about the relation of grossly visible
or other trauma, vascular accident, or arteriovenous malfor- hematuria to the urinary stream. Bleeding limited to initiation
mation. Hematuria that originates within the upper urinary of the stream is often associated with a urethral source, bleed-
tract is often associated with tubulointerstitial disease or an ing during the entire act of voiding usually indicates a source
invasive tumor, whereas hematuria originating from the lower in the bladder or upper urinary tract, and bleeding near the
urinary tract is typically associated with trauma, an invasive termination of the stream often indicates a source within the
tumor, or radiation- or chemotherapy-induced cystitis. prostate or male reproductive system.
In the patient receiving palliative care, signicant hema- The patient with gross hematuria should also be asked
turia most commonly occurs as the result of a hemorrhagic about the color of the urine: a bright red hue indicates fresh
blood, whereas a darker hue (often described as brownish, hematuria and indicates the need for culture and sensitivity
rust, or Coke colored) indicates older blood. Some patients testing. The calcium/creatinine ratio should be assessed in a
with severe hematuria report the passage of blood clots. Clots random urine sample for patients with painful macroscopic
that are particularly long and thin, resembling a shoestring or hematuria, to evaluate the risk for stone formation, particu-
shhook, suggest an upper urinary tract source; larger and larly for individuals with hyperparathyroidism or prolonged
bulkier clots suggest a lower urinary tract source. immobility. A random urine protein/creatinine ratio and mea-
The patient is asked about any pain related to the hema- surement of the C3 component of complement are obtained in
turia; this questioning should include the site and character of all patients with proteinuria or casts, to evaluate for glomeru-
the pain and any radiation of pain to the ank, lower abdomen, lopathy or interstitial renal disease. Further studies also may
or groin. Flank pain usually indicates upper urinary tract be completed, to evaluate the specic cause of hematuria and
problems, abdominal pain radiating to the groin usually indi- implement a treatment plan.
cates lower ureteral obstruction and bleeding, and suprapubic In selecting those who should undergo a more extensive
pain suggests obstruction or infection causing hematuria. evaluation, one should also consider the presence of other risk
In addition to questions about the hematuria, the nurse factors for urological cancer, such as age > 40 years, tobacco
should ask about specic risk factors, including a history of use, analgesic abuse, pelvic irradiation, cyclophosphamide use,
urinary tract infections; systemic symptoms suggesting infec- and occupational exposure to rubber compounds or dyestuffs.61
tion or renal insufciency including fever, weight loss, rash,
and recent systemic infection; any history of primary or Imaging Studies
metastatic tumors of the genitourinary system; and chemother-
apy or radiation therapy of the pelvic or lower abdominal Ultrasonography is almost always indicated in the evaluation
region. A focused review of medications includes all chemother- of hematuria in the patient receiving palliative care.56 It is used
apeutic agents used currently or in the past and any current or to identify the size and location of cystic or solid masses that
recent administration of anticoagulant medications, including may act as the source of hematuria and to assess for obstruc-
warfarin, heparin, aspirin, nonsteroidal antiinammatory tion, most stones, larger blood clots, and bladder-lling defects.
drugs, and other anticoagulant agents. An intravenous pyelogram also may be used to image the upper
and lower urinary tracts, but its clinical use is limited by the
Physical Examination risk of contrast allergy or nephropathy. Cystoscopy is performed
if a bladder lesion is suspected, and ureteroscopy with retro-
Physical examination also provides valuable clues to the source grade pyelography may be completed if an upper urinary tract
of hematuria. When completing this assessment, the nurse source of bleeding is suspected.
should particularly note any abdominal masses or tenderness,
skin rashes, bruising, purpura (suggesting vasculitis, bleeding, Management
or coagulation disorders), or telangiectasia (suggesting von
Hippel-Lindau disease). Blood pressure should be assessed, The management of hematuria is guided by its severity and its
because a new onset or rapid exacerbation of hypertension source or cause. Preventive management for chemotherapy-
may suggest a renal source for hematuria. The lower abdomen induced hematuria begins with administration of sodium 2-
is examined for signs of bladder distention, and a rectal assess- mercaptoethanesulfonate (mesna) to patients receiving an
ment is completed to evaluate apparent prostatic or rectal alkylating agent for cancer.62 This is given parenterally, and it
masses or induration. oxidizes to a stable, inactive form within minutes after admin-
istration. It becomes active when it is excreted into the urine,
Laboratory Testing where it neutralizes acrolein (the metabolite postulated to
cause chemotherapy-induced cystitis and hematuria) and
A dipstick and microscopic urinalysis is usually combined slows degradation of the 4-hydroxy metabolites produced by
with microscopic examination when evaluating hematuria. administration of alkylating drugs. It is given with cyclophos-
This provides a semiquantitative assessment of the severity phamide (20 mg/kg at time 0 and every 4 hours for 2 or 3
of hematuria (RBCs/hpf ), and it excludes pseudohematuria doses). When combined with vigorous hydration, it has been
(reddish urine caused by something other than RBCs, such as shown to protect the bladder from subsequent damage and
ingestion of certain drugs, vegetable dyes, or pigments). hematuria.
Urinalysis provides further clues to the likely source of the Mild urinary retention is managed by identifying and treat-
bleeding.60 Dysmorphic RBCs, cellular casts, renal tubular ing its underlying cause. For example, sensitivity-guided antibi-
cells, and proteinuria indicate upper urinary tract bleeding. In otics are used to treat a bacterial hemorrhagic cystitis, and
contrast, hematuria from the lower urinary tract is usually extracorporeal lithotripsy may be used to treat hematuria
associated with normal RBC morphology. associated with a urinary stone. While the hematuria persists,
Additional evaluation is guided by clues from the history, the patient is encouraged to drink more than the recom-
physical examination, and urinalysis. For example, the pres- mended daily allowance for uids, to prevent clot formation
ence of pyuria and bacteriuria suggests cystitis as the cause of and urinary retention. In addition, the patient is assisted in
obtaining adequate nutritional intake to replace lost blood, Unsuccessful attempts to place a urethral catheter or recur-
and iron supplementation is provided if indicated. rent obstruction of the irrigation catheter provides a strong indi-
In contrast to mild hematuria, moderate to severe cases often cation for endoscopic evaluation. Rigid cystoscopy is preferred
lead to the formation of blood clots, causing acute urinary reten- because it allows optimal evacuation of bladder clots and further
tion and bladder pain. In these cases, complete evacuation of evaluation of sites of bleeding; retrograde pyelography or
clots from the bladder is required before a denitive assessment ureteroscopy may also be completed if upper urinary tract clots
and treatment strategy are implemented.46 A large-bore urethral are suspected. Based on the ndings of endoscopic evaluation,
catheter (24 or 26 Fr in the adult) is placed, and manual irrigation sites of particularly severe bleeding are cauterized or resected.
is performed with a Toomey syringe. The bladder is irrigated After the initial evacuation of obstructing clots, bladder
with saline until no further clots are obtained and the backow irrigations or instillations may be completed if multiple sites
is relatively clear.46 A 22- or 24-Fr three-way indwelling catheter is of bleeding are observed or if the risk of recurrence is high, as
then placed, to allow continuous bladder irrigation using cold or in the case of radiation- or chemotherapy-induced hematuria.
iced saline. Percutaneous insertion of a suprapubic catheter is Table 145 summarizes agents used to stop moderate to severe
not recommended because of limitations of size and the poten- hematuria and their route, administration, and principal
tial to seed the tract if a bladder malignancy is present. nursing considerations.
Table 145
Treatment Options for Hemorrhagic Cystitis*
Agent Action Route of Administration/Dosage Problems/Contraindications
-Aminocaproic Acid Acts as an inhibitor of 5 g loading dose orally or Potential thromboembolic

brinolysis by inhibiting parenterally, followed by 11.25 g complications
plasminogen activation hourly to max of 30 g in 24 h; Increased risk of clot retention
substances Maximum response in 812 h Contraindicated in patients
with upper urinary tract
bleeding or vesicoureteral
reux
Decreased blood pressure
Silver nitrate Chemical cautery Intravesical instillation: Reported as 68% effective
0.5% to 1.0% solution in Case report of renal failure
sterile water in patient who precipitated
instilled for 1020 min silver salts in renal collecting
followed by no irrigation; system, causing functional
multiple instillations obstruction.
may be required
Alum (may use Chemical cautery Continuous bladder irrigation: Requires average of 21 h of
ammonium or 1% solution in sterile treatment
potassium salt of water, pH = 4.5 Thought to not be absorbed by
aluminum) (salt precipitates at pH of 7) bladder mucosa; however, case
reports of aluminum toxicity in
renal failure patients
Formalin (aqueous Cross-links proteins; exists Available as 3740%, Painful, requires anesthesia
solution of formaldehyde) as monohydrate methylene aqueous formaldehyde Vesicoureteral reux
glycol and as a mixture of (= 100% formalin) (relative contraindication):
polymeric hydrates and diluted in sterile water patients placed in
polyoxyethylene glycols; to desired concentration Trendelenburg position with
rapidly xes the (1% formalin = 0.37% low-grade reux or ureteral
bladder mucosa formaldehyde); instillation: occlusive balloons used with
50 mL for 410 min or high-grade reux
endoscopic placement Extravasation causes brosis,
of 5% formalin-soaked papillary necrosis, stula,
pledgets placed onto peritonitis
bleeding site for 15 min
and then removed
Source: References 6270.

nurses and family reporting inability to flush the catheter

9=
on a regular basis. He had been voiding per urethra inter-
case study
mittently. The catheter would not flush, and a guide wire
FH, a 21-Year-Old Man with Muscular Dystrophy
could not pass through it. Eventually, with ultrasound guid-
FH is a 21-year-old man with Duchennes muscular dystrophy ance, a new Bonanno SP tube catheter was placed, and
who was admitted to the hospital with tachypnea, respiratory instructions were given for flushing daily with normal
distress, and increasing problems with handling his secretions saline. This catheter obstructed 21 days later and could not
or swallowing well. On examination, his weight was 28 kg, be irrigated. A guide wire was placed, and a new Bonanno
respiratory rate 36, pulse 144. In general, he was a very thin, catheter was inserted over the top of the wire. FH returned
frail-appearing man who could respond only by nodding his 10 days later to the angiography suite, where an Amplatz
head or moving a few ngers. He had severe contractions of wire was placed down the indwelling catheter; the catheter
his extremities. His lips were dry and cracked, but his mucous was removed, and serial dilatation of the tract and fascia
membranes moist. On pulmonary examination, he had was then performed. Over the Amplatz wire, a 12-Fr Uresil
coarse breath sounds bilaterally with decreased sounds in the nephrostomy tube was advanced into the bladder, and the
right base. His pulse rate was increased, but no murmurs distal coil was engaged. This was then connected to a
were heard. Bowel sounds were present, but severe abdominal drainage bag, and the patient was discharged home with a
distention was noted. Genitourinary examination noted dia- plan to return in 4 weeks for an upgrading in size and
per containment. Erythema of the sacrum was present, but changing of the catheter. However, after 1 week the catheter
no skin breakdown was noted. became obstructed and was not flushed or drained. He was
FH was admitted to the intensive care unit with a diagno- then taken to the operating room, where an open procedure
sis of right lower lobe pneumonia. His course deteriorated, was done to place an 18Fr Foley catheter through a 22-Fr
and he appeared septic with decreased cardiac output, requir- sheath. The balloon was inflated to 10 cc, and then the Foley
ing intubation and respiratory support. Because of decreased was stitched in place and attached to a drainage bag. His
urine output, repeated attempts were made to place a Foley subsequent bladder management program comprised daily
catheter without success, and eventually bleeding was noted normal saline flushes and outpatient Foley catheter changes
from the urethra. At that time, both urology and surgery spe- monthly.
cialists were consulted. Plain abdominal radiographs were o]
remarkable for profoundly distended bowel loops containing
an enormous amount of fecal material. An attempt was made This case was particularly difcult in that FH was critically
to manually disimpact without success. At the time of the ill and unstable, and everyone thought death was imminent.
urology consultation, blood was noted at the meatus and a The initial placement of a small Bonanno catheter was done
decision was made to perform a bedside cystoscopic exami- because of his severe abdominal distention and stool impaction.
nation for direct visualization and catheter placement. A very The Bonanno catheter is only 14 gauge diameter and is made
dense stricture and a large false passage were noted at the of Teon, both factors that increase the risk of obstruction
bulbous urethra. The stricture would not accommodate the and encrustation. Daily irrigations with normal saline were
scope, so under direct vision the green wire was advanced ordered on discharge, but because a variety of home health
through the correct lumen into the bladder. Dilators were nurses, hospice workers, and family members were involved in
passed sequentially up to 12 Fr, which was the largest size that his care, there was confusion and the ushes were only being
could be accommodated. The 12-Fr dilator was then left in done as needed.
place overnight, and the decision was made to take FH to the For long-term catheterization, the Bonanno-type suprapu-
operating room for suprapubic catheter placement and surgi- bic catheter, which is a Teon catheter of only 14-gauge size,
cal bowel disimpaction. In the operating room, because of his should not be used. The large-bore silicon Foley catheter (18 Fr
body habitus and the fact that the bladder was displaced by and greater) is much preferred. The balloon should be inated
bowel, ultrasound guidance was used and a 14-gauge to at least 10 cc. If there are problems with the catheter coming
Bonanno suprapubic tube was placed percutaneously, out, a catheter with a 30-cc balloon could be used. Once the
stitched into place and attached to a drainage bag. tract is matured with a good-sized catheter, the monthly replace-
Eventually, FH improved and was extubated, now with ment procedure can be taught to the home health or hospice
bilevel positive airway pressure with oxygen, and he was dis- nurse and done in the home.
charged home with Home Health nursing care in addition to It is recommended that an extra Foley catheter be kept in
in-home hospice care. FH had made himself a Do Not Intu- the home, so that if, for some reason, the catheter falls out, the
bate code status, and everyone anticipated imminent death. nurse can immediately prepare the site with Betadine, lubri-
FH was scheduled to return to clinic for a suprapubic cate the catheter, and insert it into the tract and bladder; oth-
catheter change 1 month after discharge. However, the fam- erwise, the tract tends to contract fairly quickly. The urology
ily failed to keep this appointment. Six weeks after the team must always be notied if there are problems with uncon-
14-gauge Bonanno catheter had been placed, FH returned to trolled urine leakage, skin erosion, obstruction, hematoma for-
the emergency room with an obstructed catheter, with the mation, or symptoms of urinary tract infection.
9= 16. Urinary Incontinence Guideline Panel. Acute and Chronic

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40. Anson C, Gray M. Secondary urologic complications of spinal 58. Levenbach C, Eifel PJ, Burke TW, Morris M, Gershenson DM.
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Jong TP. Functional daytime incontinence: Non-pharmacologic 59. Dean RJ, Lytton B. Urologic complications of pelvic irradiation.
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15o] Jean K. Smith
Lymphedema Management
Will the swelling just keep increasing and increasing?A metastatic lymphoma patient
Finally someone is listening and knows how to help!A primary lymphedema patient
Key Points Lymphedema and edema are seen regularly in palliative and
Lymphedema and edema are frequently neglected by acute care settings. Both are often neglected despite their
health providers. capacity to cause pain, immobility, infection, skin problems,
Lymphedema is caused by irreversible lymphatic transport and signicant patient distress. Long-term, neglected edemas,
capacity failure. such as lower extremity venous insufciency, can develop into
Edema indicates that the capillary ltration rate exceeds lymphatic chronic lymphedema. Discerning the difference between edema
transport capacity. and lymphedema allows appropriate treatment. Because nurses
Long-term lymphedema management, including external have access to large, diverse patient populations, they consti-
compression, is fundamental to successful management. tute an ideal resource for improving patient care. This text pre-
pares nurses to understand, assess, and manage both edema
and lymphedema. Information is applicable to various clinical
settings, including acute, outpatient, and palliative care.1,2
o]
Denitions
Edema, a symptom, refers to excessive accumulation of uid

within interstitial tissues. One or several factors precipitate an im-
balance in extracellular uid volume. Lymphedema is edema that
arises principally from failure of lymphatic function. Lymphe-
dema, a chronic disorder, results in both extracellular and lym-
phatic stasis. Excess uids, proteins, immunological cells, and
debris in affected tissues can produce chronic inammation and
connective tissue proliferation, including hypertrophy of adipose
tissue.Somedegreeof progression usually occurs and canproduce
subcutaneous and dermal thickening and hardening. Lymph-
edema and edema are contrasted in Table 151, which provides
denitions, signs and symptoms, and basic pathophysiology.24
o]
Prevalence
The world prevalence of edema is unknown,2 and that of lymph-

edema is poorly documented. Campisi5 estimated that the
worldwide incidence of lymphedema, based on 1984 data, was
some 150 million.
285
Table 151
Comparison of Edema and Lymphedema
Edema Lymphedema
Disorder A symptom of various disorders A chronic, currently incurable edema
Denition Swelling caused by the excessive uid in Swelling (edema) caused by accumulation
tissues (interstitially) due to imbalance of uid within tissues as a result of
between capillary ltration and lymph lymphatic drainage failure, increased
drainage over time production of lymph over time, or both
Signs and Symptoms Swelling, decreased skin mobility Swelling, decreased skin mobility
Tightness, tingling, or bursting Tightness, tingling or bursting sensations
Decreased strength and mobility Decreased strength and mobility
Discomfort (aching to severe pain) Discomfort (none to severe pain)
Possible skin color change Progressive skin changes (color, texture, tone,
Pitting scale is often used: temperature), integrity such as blisters, weeping
1+ Edema barely detectable (lymphorrhea), hyperkeratosis, warts,
papillomatosis, and elephantiasis
2+ Slight indentation with depression
3+ Deep indentation for 530 sec
with pressure
4+ Area 1.52 times greater than normal
Pathophysiology Capillary ltration rate exceeds Inadequate Lymph transport capacity
lymph transport capacity PrimaryInadequately developed lymphatic
Example: Heart failure, uid overload, pathways
and/or venous thrombosis are common SecondaryDamage outside lymphatic pathways
causes of increased capillary pressure, (obstruction/obliteration)
leading to an increased capillary ltration Initial sequelae of transport failure:
rate that causes edema
Lymphatic stasis
Note:
Increased tissue uid
Timely treatment of the underlying cause or
Accumulated protein and cellular
causes usually reduces edema
metabolites
Prolonged, untreated edema can
Further increased tissue water and pressure
transition to lymphedema
Potential long-term sequelae:
Macrophages seek to decrease inammation
Increased broblasts and keratinocytes
cause chronic inammation
Gradual increase in adipose tissue
Lymphorrhea (leakage of lymph through skin)
Gradual skin and tissue thickening and
hardening progressing to hyperkeratosis,
papillomatosis and other problems
Ever-increasing risk of infection and
other complications
Source: References 2, 3, 107110.
Secondary (acquired) lymphedema results from obstruc- dissections or radiation therapy or both.1,6 Prevalence has been
tion or obliteration of lymphatic channels.6 Cancer, trauma, reported as 20% to 28%.7,8 Sentinel node biopsy has, at least
surgery, severe infections, and immobilizing or paralyzing dis- initially, decreased the incidence to 2% to 3%.9 Other cancers
eases are major causes of secondary lymphedema in developed associated with lymphedema risk include breast, gynecologi-
nations.6 In industrialized nations with sophisticated cancer cal, and prostate cancers; sarcoma; melanoma; and lym-
treatment facilities, secondary lymphedema occurs most often phoma. Infection and thrombosis are known to precipitate
in breast cancer survivors undergoing standard axillary node lymphedema in patients treated for breast and other cancers.2
Lymphedema Management 287
Filariasis, a tropical disease in underdeveloped nations, is different,17 depression and anxiety, and decreased sexual health.13
the predominant worldwide cause of secondary lymphedema. A sense of victory over cancer and full recovery are diminished
Mosquitoes transmit lariasis nematodes, which embed in by a visibly enlarged limb,18 which can potentially represent can-
human lymphatics to cause progressive lymphatic damage. cer recurrence and not just lymphatic dysfunction.
Mortimer3,10 estimated the worldwide incidence of lariasis at Additional potential sequelae include overall functional
750 million. Sequelae are enormous from untreated lymphatic limitations capable of causing loss of self-sufciency and long-
tissue destruction caused by this disease.3,10 term disability, skin changes and pathologies, and weight
Currently, primary lymphedema is attributed to embryonic gain.19 Surgery or injury to the affected area increases the
developmental abnormalities, which may be sporadic or part risk of both infection and progression.20 Prolonged stasis can
of a syndrome caused by either chromosomal abnormalities lead to severe skin and tissue symptoms, sometimes referred to
(e.g., Turners syndrome) or inherited single-gene defects. as elephantiasis. Symptoms include hyperkeratosis (hard,
Prevalence documentation is poor but has been reported as 1 reptile-like skin), warts, and papillomas (engorged and raised
in every 6000 individuals, with a male-to-female ratio of 1:3.11 lymph vessels on the skin surface).1 Chronic lymphedema,
over a number of years, has also been associated with the
development of the rare, usually fatal cancer, lymphangio-
o] sarcoma.21
Impact
Without proper management, lymphedema generally becomes o]

worse over time and triggers a number of complications.12 Early Anatomy, Physiology, and Pathophysiology
diagnosis and long-term management are essential for com-
plication avoidance and optimal outcomes.12,13 Research has Edema
documented numerous detrimental effects of lymphedema
associated with breast cancer treatment, including varying levels Edema is a symptom that results from an imbalance between
of pain,14 fatigue,15 activity and exercise restriction, arm func- capillary ltration and lymph drainage. Edema requires treat-
tion losses,16 obvious disgurement along with a sense of being ment of the underlying disorder that is precipitating tissue
Figure 151. Major components of lymphatic

circulation. Large lymph vessels and key concen-
trations of lymph nodes are displayed. One-way
directional ow causes all lymph to move to the
subclavian junctures via either the thoracic duct or
the right lymphatic duct. The largest vessel, the
thoracic duct, originates in the cisterna chyli.
(Principles adapted from References 13, 25. Original
drawing by Dale Matson, Penrose Cancer Center.)
uid excess. Precipitators can include cardiac, hepatic, renal, diagnostic tools are also available that provide insight and
allergic, or hypoproteinic disease; venous obstruction; and criteria for lymphedema assessment.1 No validated nursing
medication complications22 (see Table 151). Edema can develop lymphedema assessment tool exists. Best Practice26 compo-
into secondary lymphedema after sufcient lymphatic damage, nents of lymphedema nursing assessment are displayed in
such as in venous insufciency or fractures of the lower Table 152.
extremities.3,23,24 The rst assessment priority is proper diagnosis. For exam-
ple, assessment revealed that early symptoms of congestive
Lymphedema heart failure were responsible for a suspected lymphedema in
one elderly, frail patient referred for lymphedema assistance.
A healthy lymphatic system helps regulate the tissue cellular When the results of the physical assessment and patient his-
environment, including collecting and returning plasma and tory were combined with dialogue, the patient reported that
proteins.3 Daily, 20% to 50% of the total accumulating plasma she had replaced her cardiac medication with several natural
proteins travel through 2 to 4 L of lymph uid in a healthy supplements in order to save money and avoid toxic drugs.
lymphatic system.25 Lymphatics also remove cellular waste Edema resolved within several days after she resumed her
products, mutants, and debris; eliminate nonself antigens, and cardiac medications. Some patients, especially those who are
regulate local immune defense in the process of maintaining elderly, chronically ill, or signicantly distressed, are not able
homeostasis.3 Unidirectional vessels traverse from supercial to accurately provide a medical history. Requesting physician
to deep lymphatics through 600 to 700 lymph nodes, carrying (physician assistant or nurse practitioner) dictations can pro-
lymph uid to the venous system at the right or left venous vide excellent assessment information.
angle of the anterior chest on either side of the neck (Figure A patient health history questionnaire facilitates assessment.
151). Lymph nodes purify lymph uid, eliminating defective Useful health categories include patient demographics; health
cells, toxins, and bacteria, explaining the increased risk of history; etiology; signs and symptoms; complications; work and
infection for patients with compromised lymphatics.3 Lymph- household responsibilities; support people; spiritual health27;
edema pathology signies malfunction in any part of the pro- and lymphedema goals. Completion of the questionnaire before
cess of collecting, transporting, and depositing lymph into the the initial assessment is performed improves assessment accu-
venous system. Lymphedema pathophysiology signies dis- racy and content and allows additional time for important
ruption of these processes and is described in Table 151. nursepatient dialogue.28 Dialogue helps nurses gain essential
patient knowledge: (1) view of lymphedema, (2) readiness for
instruction and treatment, (3) pertinent work and lifestyle mat-
o] ters, (4) spiritual concerns, (5) illness and adjustment issues, and
Assessment (6) desired goals. Often the patients initial goal is cure, which is
unattainable. In this situation, the patient needs time to adopt
Physical assessment is the most common means of evaluating new goals. Nurse awareness of patient quality-of-life goals29 fos-
lymphedema.8 Assessment allows optimal management and fosters collaboration and management success. Instruction, sup-
ters the well-known medical goal, Do no harm. Practitioner port, multidisciplinary referrals, goal-setting, assistance with
Table 152
Sequential Components of Lymphedema Assessment
Rule out or address immediate complications (i.e., infection, thrombosis, severe pain, new or
recurrent cancer, signicant nonrelated disorders)
History and physical examination
Routine physical assessments: vital signs, blood pressure, height and weight, body mass index
Past and current health status, including medications and allergies (especially antibiotic
allergies and history of infection, trauma, or surgery in affected area)
Current activities of daily living ( job, home responsibilities, leisure activities, sleep position,
activities that aggravate lymphedema)
Current psychological health, support people, view of lymphedema and health
History of lymphedema etiology, presentation, duration, and progression
Patient knowledge of and response to lymphedema, interest in assistance and goals
Third party payer status
Quantication of lymphedema status (lymphedema signs and symptoms, volume, pain and other
neurological symptoms, tissue status, range of motion of nearby joints, site-specic and overall
patient function)
self-care, complication avoidance, and long-term management if conservative management is planned and symptoms are
are improved by this knowledge.30,31 not severe. Questionable clinical symptoms or etiology may
For example, a 58-year-old woman presented with large require imaging evaluation. Lymphoscintigraphy (isotope
lower extremity primary lymphedema. She expressed a posi- lymphography) is currently the optimal lymphedema diag-
tive, easy-going life view; had a boyfriend, children, and nostic test.3 Lymphography (direct), formerly the only test
grandchildren; cared for an elderly mother; and worked full- available, is now rarely used in lymphedema patients32 because
time, 50 miles away from home. Her stated treatment goal was of its potential to cause lymphatic injury and its inability to
to wear boots. If the nurses goals were complete limb reduc- clarify function.3
tion and perfect compliance, both the nurse and the patient Assessment for infection, thrombosis, or cancer metastasis
would be likely to experience frustration and failure. This (Figure 152) is required at every patient contact.33,34 Although
failure could cause the nurse to conclude that the patients later signs of infection or thrombosis are well known, awareness
poor outcome was caused by poor compliance. Alternatively, and careful assessment allow early diagnosis and treatment.
the nurse could incorporate the patients life view, goals, Lymphedema progression or treatment resistance may be the
and responsibilities into a workable treatment and self-care earliest sign of complication or may represent a lack of
program. response to current treatment. Changes in pain or comfort,
A denitive lymphedema diagnosis is often determined skin (color, temperature, condition), or mobility and range of
solely from a history and physical examination,8 especially motion are other possible early signs of these three major
Figure 152. Assessment of complications in lymphedema management. ADLs, activities of

daily living; BMI, body mass index; BP, blood pressure; DO, doctor of osteopathy; F/U, follow-up;
MD, doctor of medicine; NP, nurse practitioner; PA, physician assistant; PCP, primary
care physician; TPR, temperature, pulse, and respirations; US, ultrasonography.
Patient with Persistent Edema
PCP, MD, DO, Any health care provider Nurse explains

NP, PA lymphedema service
to patient
Possible:
Exam A. Infection
B. Thrombosis Assessment by clinical
Diagnostic Evaluation: C. Cancer Metastasis nurse specialist (CNS)
Lab, US, or Imaging
No A, B or C
Positive A, B or C
CNS Assessment
Past medical history
A B C TPR, BP, BMI, ADLs
Medications/disabilities
Edema history
A B C
Infection Thrombosis Metastasis Lymphedema etiologies
Psychosocial status & support
Antibacterial Anticoagulant Appropriate
Cultural factors
Antipyretic Antipyretic cancer
Patient goals & needs
Fluids Antibacterial diagnosis &
Lymphedema measures
Rest Fluids & rest treatment
Readiness for self-care & treatment
Support to skin?
F/U blood work
Long-Term Management
External compression, lymphedema instruction, exercise,
Complication subsides or stabilizes
self-care program, referrals, support
Edema gone Edema persists

Intensive Regular
treatment follow-up
Provide high-risk lymphedema precautions/instructions. Supportive
treatment
complications. Most infections develop subcutaneously, her wig, and a large smile. Pain level, skin color and condition,
beneath intact skin. Cultures are not recommended, because gait, and range of motion of the ankle, knee, and hip were sig-
they rarely document a bacterial source and can further nicantly improved (Figure 153A). Edema reduction in the
increase the risk of infection.35 Suspected thrombosis or new lymphedema limb was 81%; excess volume was 18% (926 mL).
or recurring cancer requires appropriate diagnostic evaluation By 41/2 months following the initial assessment, edema reduction
(e.g., Doppler ultrasonography, magnetic resonance imaging, had continued. Treatment included daytime stockings and Con-
positron emission tomography, computed tomographic scan- tourSleeve usage several nights a week. Edema reduction at this
ning). Venous ultrasonography is reported to be safer than time was 87%. Excess limb volume, compared to the contra-
venography for evaluation of suspected thrombosis in a limb lateral leg, was 12% (634 mL). Figure 153B displays improvement
with, or at high risk for, lymphedema.36 from the initial assessment through the 4-month follow-up.
Figure 152 depicts ongoing complication assessment and
decision-making. Basic treatment of complications is also
included. Signs and symptoms of metastasis can include pain, o]
neuropathies, new masses or lesions, skin/tissue color and tex- Lymphedema Precautions
ture changes, and treatment-resistant rashes. For thrombosis,
signs can include distended veins, venous telangiectasis, and No research has demonstrated that prevention of lymph-
rapid edema progression beyond the affected limb.23,37 edema is possible. Rigid prevention measures may promote
Thrombosis requires anticoagulation, pain control, rest, and fears and frustration. The term precaution appears more accu-
avoidance of use of external compression. Currently, no rate.38,39 One essential precaution is achieving and maintaining
research claries the appropriate timing for use of compres- ideal body weight, because excess body weight is associated with
sion after thrombosis, and the traditional 6-month delay until decreased lymphatic function.4048
use of compression should be assumed.31 Discussion of this Infection prevention is a vital lymphatic function3; infec-
issue with the presiding physician is appropriate. Compression tion is a signicant risk factor and is the most frequent lymph-
refers to the deliberate application of pressure to produce a edema complication. Risk increases with breaches in skin
desired clinical effect.2 In contrast, some physicians recom- integrity. Blood withdrawal provides minimal risk because the
mend the use of limb support for several days or longer after skin puncture is small and no irritant is injected. Occasional
painful thrombosis-related swelling, especially in the presence drawing of blood, when no other reasonable option exists, is
of metastatic cancer. Support signies the retention and con- necessary for some patients. Patients can request an experi-
trol of tissue without application of pressure.2 Until research enced phlebotomist and emphasize their increased infection
enables a practice standard, the presiding physician must risk. Subcutaneous, intramuscular, or intravenous injections
determine the use and timing of support and compression. can cause an allergic or inammatory response and/or infec-
A diagnosis of early thrombosis was achieved for a 67-year- tion that compromises a weakened lymphatic system. These
old patient with advanced metastatic lymphoma and leukemia risks must be compared with the benet and risk of use of a
when left leg thrombosis developed rapidly while the patient central venous catheter or suboptimal venipuncture site such
was hospitalized for a cancer complication. Thrombosis as the lower extremity.39,49 Diabetes potentially increases breast
encompassed the entire leg. During anticoagulation, leg cancer patients lymphedema risk when the affected limb is
edema, pain, and signs of venous insufciency continued to used for continual blood sticks or insulin injections. Patients
progress. Several weeks later, the patient was referred to the with bilateral limb risk, especially of the upper extremities,
clinical nurse specialist for assistance. Excess edema volume in face lifelong decisions regarding adherence to precautions.
the affected leg (compared with the nonaffected leg) was 94% Breast cancer disease and treatment factors are associated
(4816 mL). A Tensoshape product (BSN Medical Ltd., Brier- with increased lymphedema risk, including advanced cancer
eld, England) was provided (with physician approval) for stage at diagnosis and radiation therapy to the axilla or supra-
1 week, and 9% limb reduction was achieved. Good product clavicular area after a mastectomy. Box and associates50 pro-
tolerance was reported. A demonstration ContourSleeve vided excellent evidence regarding the benet of early nurse
(lower extremity, full-leg product that uses high-low foam and interventions in decreasing the occurrence and severity of sec-
a spandex compression sleeve; Peninsula Medical, Inc., Scotts ondary lymphedema in breast cancer survivors. Nurses can
Valley, CA) was then provided with instructions to use it as assist high-risk patients by presenting or reinforcing precau-
tolerated, reverting to the Tensoshape product whenever the tion information and encouraging use of a compression sleeve
ContourSleeve was removed. One week later, follow-up assess- at the earliest sign of edema. Emphasis on self-protection
ment revealed edema reduction of 43%, compared with the rather than rigid rules fosters patient empowerment.39 For
initial volume. Excess volume had decreased from 94% to 54% example, an empowered patient assumes responsibility for
(2730 mL). The patient also agreed to referral to a lymph- reminding staff to avoid use of the affected arm rather than
edema therapist to obtain daytime compression stockings and expecting medical personnel to remember to do so.
to undergo several sessions of lymphatic drainage massage. Exercise restrictions have long been recommended for
Five weeks after the initial assessment, the patient returned for breast cancer survivors. However, a growing body of evidence
follow-up wearing her new stockings, her tight-legged slacks, suggests that exercise does not necessarily increase lymphedema
6000
5000
4000
Volume (mL)
3000
2000
1000
0
Feb Feb Feb Mar Apr Jun
9/04 16/04 23/04 15/04 26/04 21/04
B Date
Figure 153. Metastatic lymphoma patient with severe deep venous thrombosis in the left leg,
showing excess edema volume (mL) in the affected compared with the unaffected leg. The graph
shows the improvement in the lymphedema over time.
risk.41,5154 Miller,34 a physical therapist, emphasized the impor-

tant role exercise plays in general health, weight control, and Table 153
Components of Long-Term Lymphedema Management
quality of life. She explored the use of exercise to foster lym-
phatic function for breast cancer survivors. In addition to sur- History, physical examination, and ongoing assessment
gical recovery exercises, Miller oversaw progressive patient and support
exibility, strengthening, and aerobic exercises. She also estab- Individualized and holistic care coordination
lished a guideline for monitoring limb exercise tolerance: (1) Multidisciplined referrals
decrease exercise activity if any adverse response occurs (e.g.,
Comprehensive initial and ongoing patient instruction
pain, increased edema, neurological changes); (2) decrease
exercise if skin and tissue texture becomes rm and/or limb Ongoing psychosocial support
size increases for more than a brief period after exercise; and (3) Promotion of ongoing optimal self-care management
consider the use of a compression garment during exercise. Facilitation of appropriate evidence-based, individualized
Although additional research is needed, preliminary research treatment
suggests that breast cancer survivors should be encouraged to Patient and practice outcome measurement
carry out all postoperative exercises, resume normal precancer Access and long-term follow-up and management
activities and be as t as possible, while regularly monitoring
Communication and collaboration with related health care
their high-risk or affected limb.34,5355 providers
o]
Long-Term Management Versus Treatment Specic spiritual interventions can include (1) support during
the struggle with and exploration of lifes ambiguities, (2)
Edema usually subsides with proper treatment, whereas lymph- acknowledgment of patients real and potential losses and vic-
edema requires long-term management.31 Components of tories; and (3) guidance in patients exploration of end-of-life
long-term lymphedema management are listed in Table 153 issues and decisions.27,56,57
and described throughout the chapter. Long-term manage- Long-term management requires quantication of ongoing
ment is a process of fostering optimal physical, functional, patient, nurse, and program outcomes.26,58 Limb size is com-
psychosocial, and spiritual wellness. Spiritual care guidelines monly used in both research and practice to evaluate treatment
have been gradually evolving in nursing for several decades. effectiveness. Other important objective outcomes include pain
Spiritual care supports patients efforts to make meaning out of level, skin condition, range of motion of nearby joints, affected
illness and to redene themselves in their new state of being. area and overall patient function, body mass index (BMI),
incidence of infection, and other complications.14,44,54,59,60 pretreatment volume. Edema volume in the affected arm was
Patient self-care compliance and overall satisfaction are subjec- reduced to 5% (124 mL). Patient self-reported satisfaction
tive outcomes that contribute to management success. Outcome and compliance with management was consistently high, and
measurement has been mandated by the Joint Commission on no limb complications occurred. Asymptomatic mild ery-
Accreditation of Healthcare Organizations (JCAHO).58 Collect- thema has continued. Follow-up is currently every 6 months.
ing and reviewing outcomes with patients over time fosters o]
ongoing instruction, complication avoidance, sustained lymph-
edema improvement, and patient empowerment.19,31,61
o]
Edema Treatment
9=
case study
Edema treatment focuses on detection and intervention
Mary, A Breast Cancer Survivor with Lymphedema
related to the causative factor or factors. Effective treatment
Mary was diagnosed with breast cancer at age 60 years. Five stabilizes the interstitial uid volume.3 Tissue support and/or
years earlier, a diagnosis of polyradiculopathy had required gentle compression can be useful in relieving edema that
early retirement from a demanding career. Every aspect of might progress to lymphedema.
Marys life had been disrupted by this life-threatening muscle
disorder. She had coped and adapted through adherence to a
set schedule of daily activities, personal problem-solving, asser- o]
tion of her locus of control, and her husbands loving support. Lymphedema Treatment
Lymphedema manifested during radiation therapy, 4
months after conservative breast surgery that included stan- Lymphedema treatment, evolving over the past 20 years, has
dard axillary node dissection. Lymphedema was accompa- lacked scientic rigor.62,63 Sequelae to the evidence decit
nied by erythema and petechiae, which varied in intensity included (1) ongoing unsubstantiated treatment fads,64,65 (2)
throughout each day. Antibiotic therapy did not provide ben- lack of practice and outcome standards, (3) lack of physician
et and was poorly tolerated. Edema volume in the surgical support and referrals,66,67 (4) inadequate third party payer
arm, compared with the nonaffected arm, was 29% (734 mL). reimbursement,38 and (5) reimbursement-driven rather than
No previous treatment had been available to Mary, who lived research-driven planning. For example, decongestive lymphatic
and received her breast cancer treatment 60 miles away from therapy (DLT) is commonly recommended as the gold stan-
the lymphedema facility. dard lymphedema treatment, and credentialing has been
Mary was attentive and participatory during assessment established.38,69 However, recent research in patients with breast
and instruction. When a daytime compression garment was cancerrelated lymphedema indicates that compression ban-
recommended, she emphatically rejected this treatment, con- daging alone provides limb reduction equivalent to that attained
vinced that the product would increase the symptoms of her through bandaging combined with lymph drainage massage
muscle disorder. No data existed to support or refute this (LDM).69a,b Clearly, gold standard lymphedema treatment must
belief. Acceptance and support of Marys viewpoint validated be re-evaluated. Additionally, since no outcome standards exist
her coping activities and fostered future self-care decision- to quantify current treatment outcomes, any treatment strategy
making.57 Patient readiness for and acceptance of treatment is can be called successful, and treatment results cannot be com-
crucial to successful chronic disease management and pared individually or in meta-analysis.69 Controlled trials are
warrants nurses patience.58 Mary agreed to use demonstra- needed to provide evidence that allows establishment of valid
tion nighttime compression products (a ContourSleeve and practice and outcome standards, which must address cost-
Medi glove) for 6 to 8 hours at a time. Instruction was pro- effectiveness, third party payer limitations, patient satisfaction,
vided, including removal of the product (until she could quality of life, and long-term outcomes.70
speak with the clinical nurse specialist) if pain, numbness, Nevertheless, over the last few years, research has reported
tingling, infection, bleeding, or worrisome signs or symptoms several treatment principles. Delay of lymphedema treatment
occurred. One month later, she obtained her ContourSleeve and larger edema volumes are associated with poorer lymph-
and assumed full responsibility for regular replacement. edema treatment outcomes.7174 Barriers to lymphedema
Over time, Mary gradually increased her product-wearing treatment are time, cost, and lifestyle disruption.75 Thus, in con-
time. Eight months after assessment, she had achieved 45% clusion, the research decit has dramatically hindered lymph-
limb reduction. Excess limb volume, compared with the non- edema treatment efcacy, and this can only be addressed
affected arm, had decreased from 29% to 16% (405 mL). She through appropriate scientic investigation.
never experienced pain or other neurological symptoms. One
year after assessment, Mary requested assistance in obtaining Infection Treatment
a compression sleeve and glove for daytime use. Over the
next several months, daytime compression resulted in an Infection is the most common lymphedema complica-
83% limb volume reduction compared with the initial tion.3 Lymph stasis, decreased local immune response, tissue
congestion, and accumulated proteins and other debris foster exercises, optimal nutrition and hydration, healthy lifestyle
infection.76 Traditional signs and symptoms (fever, malaise, practices, and seeking assistance for lymphedema-related prob-
lethargy, and nausea) are often present.14 Decades of literature lems. Patient empowerment for optimal self-care is a great
support prompt oral or intravenous antibiotic therapy.3,35,77,78 impetus to long-term management success.90
Because streptococci and staphylococci are frequent precipita- For example, one female patient attended school, worked
tors, antibiotics must cover normal skin ora, as well as gram- part-time, and was a single parent of two sons. She had experi-
positive cocci,79 and have good skin penetration.80 Early enced many lymphedema treatment failures after her initial pre-
detection and treatment can help prevent the need for intra- sentation of lymphedema at age 5 years. Treatments had been
venous therapy and hospitalization.35 Intravenous antibiotic painful, distressing, and unsuccessful. Emotional scars had
therapy is recommended for systemic signs of infection or resulted from having legs so different from those of her friends.
insufcient response to oral antibiotics.80 Nursing activities Five years of intermittent support and encouragement were
include assisting patients in obtaining prompt antibiotic ther- required to achieve patient treatment readiness. Achieving a
apy, monitoring and reporting signs and symptoms, and pro- successful treatment program required another year and
viding instruction regarding high uid intake, rest, elevation of included surgical repair of ingrown toenails. Use of outcomes
the infected limb, and avoidance of strenuous activity. provided concrete data that fostered excellent compression
Garment-type compression is encouraged as soon as tolerable compliance (daytime garment and nighttime lower leg Con-
during infection.81 Wound care or infectious disease specialists tourSleeves). Ultimately, external compression reduced pain
can be helpful in complicated cases. Infection prophylaxis has and fatigue sufciently to allow 3 extra hours of activity per day.
been highly effective for patients who experience repeated seri- Long-term treatment success included sustained reduction of
ous infections or inammatory episodes.77,8284 Effective edema lymphedema and pain, elimination of recurrent infections,
reduction and control may also help prevent lymphedema excellent compression compliance and self-care, high treatment
infection.84 satisfaction, and minimal need for lymphedema assistance.
The feet, which are especially susceptible to fungal infec-
tions in lower extremity lymphedema, can exhibit peeling, Exercise
scaly skin, and toenail changes. Antifungal powders are recom-
mended prophylactically. Antifungal creams should be used at Exercise guidelines described earlier (see Lymphedema Pre-
the rst sign of fungus. Diabetic-like skin care and use of cot- cautions) are applicable for lymphedema management, includ-
ton socks and well-tted, breathable (leather or canvas), ing tness exercise. Physician approval for exercise may be
sturdy shoes are benecial.85 required. Cardiac or pulmonary disease and limb progression
may require exercise restriction.88
Pain Treatment
Skin Care
Foldi86 reported that pain is not associated with lymphedema
and requires further investigation if present. Others have Diabetic-like care fosters skin health and integrity as well as
reported a 30% to 60% incidence of pain in breast cancer-related infection prevention.85 Diligent care is especially important
lymphedema. Causes of pain included infection, postoperative for patients with lower extremity, genital, breast, head, neck, or
changes in the axilla, postmastectomy pain syndrome, brachial late-stage lymphedema, additional skin alterations, or unre-
plexopathy, various arthritic conditions, peripheral entrap- lated debilitating conditions. Lymphedema can cause skin dry-
ment neuropathies, vascular compromise, and cancer recur- ness and irritation, which is increased with long-term use of
rence.14,80 Sudden onset of pain requires careful assessment for compression products. Bland, nonscented products are rec-
complications (see Figure 152). Patient quantication of pain ommended for daily cleansing and moisturizing.76 Low pH
level at regular intervals is helpful.14 Use of the 0-to-10 pain moisturizers (e.g., AmLactin), which discourage infection, are
scale developed by Serlin and colleagues87 is recommended for recommended for advanced lymphedema, because skin and
cancer pain assessment. Standard pain management principles tissue changes increase infection risk. Water-based moisturiz-
are applicable for lymphedema-related pain. ers, which are absorbed more readily, are less likely to damage
compression products but are not suitable for all patients.
Elevation and Self-Care Cotton clothing allows ventilation and is absorbent.
Advanced lymphedema can cause several skin compli-
Because elevation is recommended for edema, it has often cations, including lymphorrhea, lymphoceles, papillomas,
been emphasized for lymphedema patients. Elevation is imprac- and hyperkeratosis. Lymphorrhea is leakage of lymph uid
tical for lymphedema patients, and documentation of benet through the skin that occurs when skin cannot accommodate
has not been established.80,88,89 Patient avoidance of limb depen- accumulated uid. Nonadherent dressings, good skin care,
dency, as possible, appears to be a more appropriate lymph- and compression are used to alleviate leakage. Compression
edema precaution. Optimal patient self-care typically includes and good skin care also reduce the occurrence of lymphoceles,
adherence to precautions, use of compression products and papillomas, and hyperkeratosis; these complications reect skin
other treatments, weight management, tness and lymphedema adaptation to excess subcutaneous lymph.
External Compression ful products exist to assist patients in applying garments, an

especially important task for elderly and disabled patients. Hand
Because human skin expands as needed to maintain integrity, arthritis or neuropathy can hinder tolerance of garments.
it does not resist progressive edema. External compression Garment removal is required if compression causes pain, neuro-
provides resistant pressure and is currently the most essential logical symptoms, or color or temperature changes. Readjust-
part of all lymphedema treatment.91 Physiological effects of ment and movement may remedy the problem; often product
compression include edema control or reduction, decreased replacement is required. Because a variety of products exist, staff
accumulated protein, decreased arteriole outow into the inter- and patient persistence is likely to result in good patient toler-
stitium, improved muscle pump effect with movement and ance. Rubber gloves (dish-washing gloves) facilitate application
exercise of the affected area, and protection of skin. Gradient of garments and extend their longevity. Timely garment replace-
external pressure provides the greatest pressure distally and less ment (usually every 6 months) is essential for good edema con-
pressure proximally; this is optimal for improved lymphatic trol.92
transport.92 Compression that is not uniform on a limb (e.g.,
blood pressure cuffs, tourniquets, watches, elastic sleeves) can Other Compression Products
be detrimental by decreasing peripheral lymphatic function.
A growing number of alternative commercial compression
Bandages products have become available. Semirigid products (e.g., Rei-
dSleeve [Peninsula Medical, Inc., Scotts Valley CA], CircAid
Multilayer, low-stretch bandages provide external compres- [CircAid, San Diego, CA]) use foam and Velcro straps to pro-
sion. They may be used as a single treatment modality, as part vide nonelastic compression designed to simulate bandaging
of DLT, or as part of a compression regimen that uses daytime while saving time and energy. JoVi (Innovative Medical Solu-
garments and nighttime bandages. This third strategy is espe- tions, Inc., Selah, WA) and ContourSleeve products use foam
cially important for patients with severe lymphedema, such as and an outer spandex compression sleeve. The ContourSleeve
can occur with morbid obesity or neglected primary lymph- allows adjustment for limb size changes, which can be ideal for
edema. Foam or other padding is often used under bandages limb reduction or increase or for weight changes affecting
to improve edema reduction and foster limb uniformity. The limb size. Distinct advantages of these products include ease
time, effort, and dexterity required for bandaging can become and speed of application, overall comfort and tolerance, and
burdensome or impossible for some patients, necessitating the product longevity. Haslett and Aitken97 reported that the Trib-
use of an alternative compression method. Kelly1 emphasized ute Solaris (LymphaCare, New York, NY) appeared to con-
avoidance of bandaging because of arterial insufciency in tribute to maintenance of previously achieved DLT reduction.
patients with an ankle/brachial index (ABI) of < 0.8. Lund98 reported that use of CircAid provided an acceptable
substitute for bandaging. Research is needed to provide insight
Compression Garments and direction regarding the use of these promising products.95
Use of CircAid products on the lower extremities is currently
Compression garments are universally recommended for all contraindicated with ABI < 0.8.98
patients with lymphedema of the extremities.68,92,93 Some experts
have recommended early compression to manage lymph- Decongestive Lymphatic Therapy
edema without the need for DLT.24,65,94 A national consensus and Lymph Drainage Massage
meeting provided the following garment recommendations:
(1) guidelines for selection and use of garments remain unclear; DLT evolved in Europe when Michael Foldi86 combined Vod-
(2) cost and patient tolerance of the garments warrant consid- ders Manual Lymph Drainage (MLD) technique with ban-
eration when prescribing; (3) hand swelling may develop or daging, exercises, and specialized skin care. Dr. Foldi described
become problematic if an arm sleeve is used without hand pro- his four-modality lymphedema treatment as Complete
tection, and patients should be made aware of this risk before Decongestive Therapy (CDT). Information has already been
obtaining a garment; (4) garments should be replaced after provided on skin care, exercise and compression. Vodders
they lose elasticity; and (5) use of garments is recommended MLD technique consisted of a specialized light touch (skin-
during physical activity and exercise.88 Garment use recom- stretching) massage that stimulates peripheral lymphatics and
mendations vary from daytime only, after DLT,1,95 to continual assists lymph transport across watersheds to allow alternative
use as a rst-line treatment.94 Svensson94 reported a 50% to transport routes. The term Lymphatic Drainage Massage
100% limb reduction through continual use of garments as a (LDM) is used in this text. The National Lymphedema Net-
sole treatment. Bertelli and colleagues96 reported a 17% reduc- work has established DLT credentialing in the United States.
tion with 6 hours of daily use of compression alone. Nevertheless, two randomized controlled clinical trials have
Garment usage requires frequent laundering of products demonstrated that compression bandaging (CB) alone is as
(daily to every other day), daily skin care and complication effective at reducing arm volumes in breast cancerrelated
monitoring, and 2 replacements every 6 months. Various help- lymphedema as CB in combination with LDM/MLD. Thus,
scientic research demonstrates that compression bandaging ously had a mean limb reduction of 120%. Patients have main-
is the single most optimal lymphedema treatment. tained these excellent limb reductions with 24-hour use of
Elvarex compression garments (BSN-JOBST, Inc., Emmerick,
Pneumatic (Mechanical) Pumps Germany) and regular follow-up.103
Mechanical pumps use electricity to inate a single-chamber or

multichamber sleeve and produce external limb compression. 9=
A decreased tissue capillary ltration rate (documented by case study
lymphoscintigraphy) produces tissue uid reduction and, con- GR, a Breast Cancer Survivor with Resistant Lymphedema
sequently, limb volume decrease.99 Lymph formation decreases,
GR, a California breast cancer survivor, developed lymph-
but lymph transport, which would address lymphedema patho-
edema in 1977; she intermittently used garments and
physiology, is not affected. Badger and coworkers62 initiated a
pumps for the next two decades. After relocating to Col-
Cochrane review of physical therapies used to treat lymph-
orado in 1996, she was assisted by a Lymphedema Clinical
edema. Regarding pumps, she reported: (1) pumps are used as
Nurse Specialist. Over the next 3 years, GR was referred for
a way of both reducing lymphedema and controlling it; (2)
two courses of intensive DLT. The second course was pro-
opinion is divided on the use of pumps for lymphedema treat-
vided at a well-known Arizona treatment center. Lymph-
ment; (3) pump use has reduced swelling, but concern exists
edema gradually and continually progressed, in spite of
regarding the way in which swelling is decreased as well as the
good compliance to the use of compression products. The
rapid displacement of uid elsewhere in the body; and (4) use
patient met liposuction surgery criteria and obtained third
of pumps does not eliminate the need for compression gar-
party payer approval for liposuction surgery in Sweden. Pre-
ments and may not provide more benet than garments alone.
operatively, excess limb volume was 2315 mL; no pitting was
Brennan and Miller88 presented a consensus view of reserva-
present. The patient had agreed to lifelong use of compres-
tions related to tissue injury from improper pump prescription
sion and underwent liposuction surgery in April of 2001.
and use. Investigations have reported several pump complica-
The surgical aspirate contained 90% adipose tissue.
tions, including lymphatic congestion and injury proximal to
One month after surgery, she had achieved 125% edema
the pump sleeve, increased swelling adjacent to the pump cuff
reduction.
in up to 18% of patients,100 lack of benet in all but stage I
Patient follow-up takes place at least every 6 months, and
(reversible) lymphedema, and development of genital lymph-
garments are replaced at each of these follow-ups. Three years
edema in up to 43% of patients with cancer-related lower
after surgery, edema reduction was 119%. Hand edema has
extremity lymphedema.100,101 After more than 50 years of pump
returned. GR has continued 100% compliance with use of
use in lymphedema care1 and long-established Medicare reim-
compression products. She has also regained signicant
bursement, no guidelines exist, signicant complications are
quality of life. In late 2004, GR began using a ContourSleeve
reported, and research has not claried benet.
at nighttime along with her Elvarex glove. She continues day-
time use of the Elvarex sleeve and glove. Greater than 100%
Surgical Treatments edema reduction has been maintained. GR reported relief at
the variation between her daytime and nighttime products.
For a number of decades, surgical intervention has been
Figures 154 and 155 display the results of lymphedema
described as a last resort in the treatment of lymphedema.102
treatment for this patient.
Several surgical interventions have been reported, including
o]
microsurgical anastomoses, debulking, and liposuction. Surgery
does not cure lymphedema, and follow-up use of compression
is necessary.94,91 Surgery has provided cosmetic improvement Pharmacological Interventions
in eyelid or genital edema.2
Liposuction surgery has demonstrated greater than 100% Pharmacological treatment of lymphedema is supportive and
reduction for patients with treatment-resistant lymphedema.93,94 includes antimicrobials, antifungals, and diuretics. Infection
Lack of response to conventional treatment resulted from treatment has already been described. Physicians commonly
formation of excess subcutaneous adipose tissue secondary to use diuretics to treat edema and lymphedema. Diuretics gen-
slow or absent lymph ow.103 Liposuction has increased skin cap- erally provide little benet in normal lymphedema manage-
illary blood ow and does not further impair already decreased ment, because they limit capillary ltration by reducing the
lymph transport capacity in breast cancer patients with lymph- circulating systemic blood volume. Depleted systemic uid
edema.91,104 No surgical complications occurred in 81 patients volume can lead to hypotension and altered electrolyte status
over a period of 9 years (data collection is ongoing). The average while achieving minimal to no lymphedema volume reduc-
percentage of limb reduction for all patients 1 or more years after tion.3 Isotope lymphography has substantiated that removal of
surgery (including 78 breast cancer survivors) was 107%. Fifteen uid from the blood of lymphedema patients decreases the
study patients who underwent liposuction 8 or more years previ- rate of lymphatic drainage.104
Figure 154. Photographs showing results

of lymphedema treatment in GR, a breast
cancer survivor (see Case Study).
A. Preoperative2315 ml. B. Four
weeks postoperative100 ml. C. Three years
postoperative210 ml.
2500
2000
1500
Edema volumes (mL)
1000
500
0
Oct 7/96
Apr 23/97
Dec 22/99
Mar 24/00
May 24/00
Aug 4/00
Oct 25/00
Jan 23/01
Mar 29/01
Apr 17/01
Apr 24/01
May 3/01
June 5/01
Aug 6/01
Oct 2/01
Dec 5/01
Jan 29/02
Apr 1/02
May 6/02
Aug 20/02
Jan 27/03
Apr 2/03
Sep 9/03
Apr 1/04
Date 25
Date 26
Date 27
500
1000
Dates
Figure 155. Affected arm excess edema volume, compared with nonaffected arm, over time.
The patient, GR, underwent liposuction of the affected arm in April 2001.
Diuretics can be useful in some lymphedema-related con- tional courses are available to provide guidance for managing
ditions, including lymphedema of mixed origin; effusion of these difcult lymphedemas.
lymph into body cavities or organs (abdomen, thorax, geni-
tals); lymphatic obstruction associated with malignancy, espe-
cially in hard-to-treat areas; and short-term use after infection, o]
thrombosis, or trauma.2,95 Conclusion
Unusual Lymphedemas Edema is a symptom usually relieved by addressing the

causative factor. Lymphedema, often labeled as edema, is a
Palliative care may require the management of unusual and chal- chronic disorder that requires long-term management.
lenging lymphedema sites, such as breast, head, neck, trunk, or Although external compression is essential to effective lym-
genitals.105 LDM, skin-softening techniques, foam chip pads, phedema management, third party payer reimbursement is
and external compression (if possible) are recommended.2 inadequate and frustrating, patients are frequently tted with
External compression may be achieved with collars, vests, cus- products they cannot tolerate, and many patients have not been
tom pants or tights, scrotal supports,76 or spandex type exer- adequately prepared for compression products and therefore
cise apparel. The assistance of occupational or physical discontinue use when their product does not cure the lymph-
therapists and a seamstress may be helpful. Nationally, instruc- edema. Newer compression products, such as the CircAid,
Legacy, and ContourSleeve, offer exciting product alternatives 16. Bosompra K, Ashikaga T, OBrien PJ, Nelson L, Skelly J. Swelling,
but lack controlled research substantiation. Benets of two numbness, pain and their relationship to arm function among
commonly supported treatments, DLT and pneumatic com- breast cancer survivors: A disablement process model perspec-
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8:1,2,5.
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berg T. The experience of lower limb lymphedema for women
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16Ao] Barbara M. Bates-Jensen
Skin Disorders: Pressure Ulcers

Assessment and Management
I always thought that bedsores came from neglect. I feel so guilty that I let this happen.
A patients family member
Key Points Palliative care for skin disorders is a broad area, encompassing
Pressure ulcer prevention includes repositioning at frequent prevention and care for pressure ulcers, management of malig-
intervals, with attention to adequate pain relief interventions nant cutaneous wounds and stulas, and management of
before movement. stomas. The goals of treatment are often to reduce discomfort,
Palliative care for pressure ulcers includes attention to prevention manage odor and drainage, and provide for optimal functional
measures, obtaining and maintaining a clean wound, management capacity. In each area, involvement of the caregiver and family
of exudates and odor, and prevention of complications such as in the plan of care is important. Management of skin disorders
wound infection. involves signicant physical care as well as attention to psycho-
It is essential to involve caregivers and family members in the plan logical and social care. To meet the needs of the patient and
of care. family, access to the multidisciplinary care team is crucial, and
consultation by an Enterostomal Therapy nurse or a certied
Wound, Ostomy, Continence nurse is highly desirable.
Because skin disorders are such an important issue in pal-
liative nursing care, Chapter 16 has been divided into two dis-
tinct parts. Part 16A addresses pressure ulcers in depth, and
Part 16B addresses tumor necrosis, stulas, and stomas.
o]
Denition
Pressure ulcers are areas of local tissue trauma that usually

develop where soft tissues are compressed between bony
prominences and external surfaces for prolonged periods.
Mechanical injury to the skin and tissues causes hypoxia and
ischemia, leading to tissue necrosis. Caring for the patient with
a pressure ulcer can be frustrating for clinicians because of the
chronic nature of the wound and because additional time and
resources are often invested in the management of these
wounds. Pressure ulcer care is costly, and treatment costs
increase as the severity of the wound increases. Additionally,
not all pressure ulcers heal, and many heal slowly, causing a
continual drain on caregivers and on nancial resources. The
chronic nature of a pressure ulcer challenges the health care
provider to design more effective treatment plans.
Once a pressure ulcer develops, the usual goals are to man-
age the wound and to support healing. However, some patients
301
will benet most from a palliative care approach. Palliative bony structure is more susceptible to skin breakdown from
wound care means that the goals are comfort and limiting the external forces, because the soft tissue that is normally used to
extent or impact of the wound, but without the intent of heal- deect physical forces (e.g., pressure, shear) is absent. Therefore,
ing. Palliative care for chronic wounds, such as pressure ulcers, the tissues are less tolerant of external forces, and the pressure
is appropriate for a wide variety of patient populations. Pallia- gradient within the vascular network is altered.6
tive care is often indicated for terminally ill patients, such as Alterations in the vascular network allow an increase in the
those with terminal-stage cancer or other diseases. Institution- interstitial uid pressure, which exceeds the venous ow. This
alized older adults with multiple comorbidities and older results in an additional increase in the pressure and impedes
adults with severe functional decline may also benet from arteriolar circulation. The capillary vessels collapse, and throm-
palliative care. Sometimes individuals with long-standing bosis occurs. Increased capillary arteriolar pressure leads to
wounds and other life expectations benet from a palliative uid loss through the capillaries, tissue edema, and subsequent
care approach for a specied duration of time. For example, a autolysis. Lymphatic ow is decreased, allowing further tissue
wheelchair-bound young adult with a sacral pressure ulcer edema and contributing to the tissue necrosis.3,5,79
may make an informed choice to continue to be up in a wheel- Pressure, over time, occludes blood and lymphatic circula-
chair to attend school even though this choice severely dimin- tion, causing decient tissue nutrition and buildup of waste
ishes the expectation for wound healing. The health care products due to ischemia. If pressure is relieved before a critical
professional may decide jointly with the patient to treat the time period is reached, a normal compensatory mechanism,
wound palliatively during this time frame. reactive hyperemia, restores tissue nutrition and compensates
The foundation for designing a care plan for the patient with for compromised circulation. If pressure is not relieved before
a pressure ulcer is a comprehensive assessment. This is true even the critical time period, the blood vessels collapse and throm-
if the goals of care are palliative. Comprehensive assessment bose, causing tissue deprivation of oxygen, nutrients, and waste
includes assessment of wound severity, wound status, and the removal. In the absence of oxygen, cells utilize anaerobic path-
total patient. Generally, management of the wound is best ways for metabolism and produce toxic byproducts. The toxic
accomplished within the context of the whole person, particu- byproducts lead to tissue acidosis, increased cell membrane
larly if palliation is the outcome. Assessment is the rst step in permeability, edema, and, eventually, cell death.3,7
maintaining and evaluating a therapeutic plan of care. Without Tissue damage may also be caused by reperfusion and reoxy-
adequate baseline wound and patient assessment and valid genation of the ischemic tissues or by postischemic injury.10
interpretation of the assessment data, the plan of care for the Oxygen is reintroduced into tissues during reperfusion after
wound may be inappropriate or ineffectiveat the least, it may ischemia. This triggers oxygen free radicals, known as super-
be disjointed and fragmented due to poor communication. An oxide anion, hydroxyl radicals, and hydrogen peroxide, which
inadequate plan of care may lead to impaired or delayed heal- induce endothelial damage and decrease microvascular integrity.
ing, miscommunication regarding the goals of care (healing Ischemia and hypoxia of body tissues are produced when cap-
versus palliation), and complications such as infection. illary blood ow is obstructed by localized pressure. The
degree of pressure and the amount of time necessary for ulcer-
ation to occur have been a subject of study for many years. In
o] 1930, Landis,11 using single-capillary microinjection techniques,
Pathophysiology of Pressure Ulcer Development determined normal hydrostatic pressure to be 32 mm Hg at
the arteriolar end and 15 mm Hg at the venular end. His work
Pressure ulcers are the result of mechanical injury to the skin has served as a criterion for measuring occlusion of capillary
and underlying tissues. The primary forces involved are pres- blood ow. Generally, a range from 25 to 32 mm Hg is consid-
sure and shear.15 Pressure is the perpendicular force or load ered normal and is used as the marker for adequate relief of
exerted on a specic area; it causes ischemia and hypoxia of pressure on the tissues. In severely compromised patients,
the tissues. High-pressure areas in the supine position are the even this level of pressure may be too high.
occiput, sacrum, and heels. In the sitting position, the ischial Pressure is greatest at the bony prominence and soft tissue
tuberosities exert the highest pressure, and the trochanters are interface and gradually lessens in a cone-shaped gradient to
affected in the side-lying position.2,6 the periphery.2,12,13 Therefore, although tissue damage appar-
As the amount of soft tissue available for compression ent on the skin surface may be minimal, the damage to deeper
decreases, the pressure gradient increases. Likewise, as the tissue structures can be severe. In addition, subcutaneous fat and
available for compression increases, the pressure gradient muscle are more sensitive than the skin to ischemia. Muscle
decreases. For this reason, most pressure ulcers occur over bony and fat tissues are more metabolically active and, therefore,
prominences, where there is less tissue for compression.6 This more vulnerable to hypoxia with increased susceptibility to
relationship is important to understand for palliative care, pressure damage. The vulnerability of muscle and fat tissues to
because most of the likely candidates for palliative care will have pressure forces explains pressure ulcers, in which large areas of
experienced signicant changes in nutritional status and body muscle and fat tissue are damaged yet the skin opening is rela-
weight, with diminished soft tissue available for compression tively small.8 In patients with severe malnutrition and weight
and a more prominent bony structure. This more prominent loss, there is less tissue between the bony prominence and the
Skin Disorders: Pressure UlcersAssessment and Management 303
surface of the skin, so the potential for large ulcers with exten- over the bony prominence and those that affect the tolerance of
sive undermining or pocketing is much higher. the tissues to pressure.
There is a relationship between intensity and duration of Mobility, sensory loss, and activity level are related to the
pressure in pressure ulcer development. Low pressures over a concept of increasing pressure. Extrinsic factors including
long period of time are as capable of producing tissue damage as shear, friction, and moisture, as well as intrinsic factors such as
high pressures for a shorter period.2 Tissues can tolerate higher nutrition, age, and arteriolar pressure, relate to the concept of
cyclic pressures compared with constant pressure.14 Pressures tissue tolerance.15 Several additional areas may inuence pres-
differ in various body positions. They are highest (70 mm Hg) sure ulcer development, including emotional stress, tempera-
on the buttocks in the lying position and in the sitting position ture, smoking, and interstitial uid ow.16
can be as high as 300 mm Hg over the ischial tuberosities.2,6
These levels are well above the normal capillary closing pres- Immobility
sures and are capable of causing tissue ischemia. If tissues have
been compressed for prolonged periods, tissue damage will con- Immobility, inactivity, and decreased sensory perception affect
tinue to occur even after the pressure is relieved.12 This contin- the duration and intensity of the pressure over the bony promi-
ued tissue damage relates to changes at the cellular level that nence. Immobility or severely restricted mobility is the most
lead to difculties with restoration of perfusion. Initial skin important risk factor for all populations and a necessary con-
breakdown can occur in 6 to 12 hours in healthy individuals and dition for the development of pressure ulcers. Mobility is the
more quickly (less than 2 hours) in those who are debilitated. state of being movable. The immobile patient cannot move, or
More than 95% of all pressure ulcers develop over ve clas- facility or ease of movement is impaired. Closely related to
sic locations: sacral/coccygeal area, greater trochanter, ischial immobility is limited activity.
tuberosity, heel, and lateral malleolus.4 Correct anatomical ter-
minology is important when identifying the true location of Inactivity
the pressure ulcer. For example, many clinicians often docu-
Activity is the production of energy or motion and implies an
ment pressure ulcers as being located on the patients hip. The
action. Activity is often clinically described by the ability of the
hip, or iliac crest, is actually an uncommon location for pres-
individual to ambulate and move about. Those persons who
sure ulceration. The iliac crest, located on the front of the
are bed- or chair-bound, and thus inactive, are more at risk for
body, is rarely subject to pressure forces. The area most clini-
pressure ulcer development.17,18 A sudden change in activity level
cians are referring to is correctly termed the greater trochanter.
may signal signicant change in health status and increased
The greater trochanter is the bony prominence located on the
potential for pressure ulcer development.
side of the body, just above the proximal, lateral aspect of the
thigh, or saddlebag area. The majority of pressure ulcers
Sensory Loss
occur on the lower half of the body. The location of the pres-
sure ulcer may affect clinical interventions. For example, the Sensory loss places patients at risk for compression of tissues and
patient with a pressure ulcer on the sacral/coccygeal area with pressure ulcer development, because the normal mechanism for
concomitant urinary incontinence requires treatments that translating pain messages from the tissues is dysfunctional.19
addresses the incontinence problem. Ulcers in the sacral/coc- Patients with intact nervous system pathways feel continuous
cygeal area are also more at risk for friction and shearing dam- local pressure, become uncomfortable, and change their position
age due to the location of the wound. Figure 161 shows the before tissue ischemia occurs. Spinal cordinjured patients have
correct anatomical terminology for pressure ulcer locations. a higher incidence and prevalence of pressure ulcers.20,21 Patients
Typical pressure ulcer locations for palliative care patients are with paraplegia or quadriplegia are unable to sense increased
the sacral/coccygeal area, trochanters, and heels. Patients with pressure; if their body weight is not shifted, pressure ulceration
contractures are at special risk for pressure ulcer development develops. Likewise, patients with changes in mental status or
due to the internal pressure of the bony prominence and the functioning are at increased risk for pressure ulcer formation.
abnormal alignment of the body and its extremities. Institu- They may not feel the discomfort from pressure, may not be alert
tionalized older adults with severe functional decline are par- enough to move spontaneously, may not remember to move,
ticularly susceptible to contractures due to immobilization for may be too confused to respond to commands to move, or may
extended periods of time in conjunction with limited efforts be physically unable to move.19 This risk factor is particularly evi-
for maintenance of range of motion. dent in the palliative care population, in which individuals may
be at the end of life, may not be alert enough to move sponta-
neously, or may be physically unable to move.
o]
Risk Factors for Pressure Ulcers Shear
Pressure ulcers are physical evidence of multiple causative Extrinsic risk factors are those forces that make the tissues
inuences. Factors that contribute to pressure ulcer develop- less tolerant of pressure. Extrinsic forces include shear, fric-
ment can be thought of as those that affect the pressure force tion, and moisture. Whereas pressure acts perpendicularly to
Occiput (back of head)
Scapula (shoulder)
Ribs and vertebrae
Ischium (hip)
Note: True ischium ulcers are
located on the front of the body.
Sacrum
Note: Sacral bones are
superior to the coccyx.
Coccyx
Note: Coccyx is inferior
to sacral bones.
Greater trochanters
Note: Superior lateral thigh region,
often mislabeled as hip.
Ischial tuberosities
(sit upon bones)
Lateral malleolus (outer ankle)
Figure 16A-1. Common anatomical

Calcaneous (heel)
locations of pressure ulcers. Medial malleolus (inner ankle)
cause ischemia, shear causes ischemia by displacing blood Friction

vessels laterally and thereby impeding blood flow to tis-
sues.2224 Shear is caused by the interplay of gravity and fric- Friction and moisture are not direct factors in pressure ulcer
tion. Shear is a parallel force that stretches and twists tissues development, but they have been identied as contributing
and blood vessels at the bony tissue interface; as such, it to the problem by reducing tolerance of tissues to pressure.24
affects the deep blood vessels and deeper tissue structures. Friction occurs when two surfaces move across one another.
The most common example of shear is seen in the bed Friction acts on tissue tolerance to pressure by abrading and
patient who is in a semisitting position with knees flexed and damaging the epidermal and upper dermal layers of the skin.
supported by pillows on the bed or by head-of-bed elevation. Additionally, friction acts with gravity to cause shear. Friction
If the patients skeleton slides down toward the foot of the abrades the epidermis, which may lead to pressure ulcer devel-
bed, the sacral skin may stay in place (with the help of fric- opment by increasing the skins susceptibility to pressure injury.
tion against the bed linen). This produces stretching, pinch- Pressure combined with friction produces ulcerations at lower
ing, and occlusion of the underlying vessels, resulting in pressures than does pressure alone.24 Friction acts in conjunction
ulcers with large areas of internal tissue damage and less with shear to contribute to the development of sacral/coccygeal
damage at the skin surface. pressure ulcers on patients in the semi-Fowler position.
Moisture conditions.20,21,31,34,35 Other psychological factors may affect

risk for pressure ulcer development.3638 Self-concept, depres-
Moisture contributes to pressure ulcer development by remov- sion, and chronic emotional stress have been cited as factors in
ing oils on the skin, making it more friable, as well as interacting pressure ulcer development; and the emerging role of cortisol
with body support surface friction. Constant moisture on the levels in pressure ulcer development bears monitoring.
skin leads to maceration of the tissues. Waterlogging leads to
softening of the skins connective tissues. Macerated tissues Environmental Resources
are more prone to erosion, and once the epidermis is eroded,
there is increased likelihood of further tissue breakdown.25 Environmental resources include socioeconomic, psychoso-
Moisture alters the resiliency of the epidermis to external forces. cial, health care system, and therapy resources. These factors
Both shearing force and friction increase in the presence of mild are less understood than other risk factors; however, several of
to moderate moisture. Excess moisture may be caused by them play important roles in determining risk for pressure
wound drainage, diaphoresis, or fecal or urinary incontinence. ulcer development and course of pressure ulcer care in patients
receiving palliative care. Socioeconomic resources that may
Incontinence inuence pressure ulcer development and healing are cost of
therapy, type of payor (insurance type), and access to health
Urinary and fecal incontinence are common risk factors associ- care. In palliative care, cost of therapy becomes an important
ated with pressure ulcer development. Incontinence contributes issue, particularly in long-term care facilities, where nancial
to pressure ulcer formation by creating excess moisture on the resources are limited and cost of therapy may hinder access to
skin and by chemical damage to the skin. Fecal incontinence has treatment.
the added detrimental effect of bacteria in the stool, which can Health care system resources are the type of health care set-
contribute to infection as well as skin breakdown. Fecal inconti- ting and the experience, education level, and discipline of
nence is more signicant as a risk factor for pressure ulceration health care professionals. Patients receiving palliative care are
because of the bacteria and enzymes in stool and their effects on often in long-term care facilities and dependent on the direct
the skin.19,26 Inadequately managed incontinence poses a signi- care practices of nurse aides with minimal education in health
cant risk factor for pressure ulcer development, and fecal incon- care, nursing, and, especially, the needs of the palliative care
tinence is highly correlated with pressure ulcer development.17,27 patient. Therapy resources include topical treatments for
wounds and systemic treatments. Palliative care patients often
Nutritional Risk Factors receive concomitant therapy that impairs mobility or sensory
perception (e.g., pain medication) or normal healing mecha-
There is some disagreement concerning the major intrinsic nisms (e.g., steroids).
risk factors affecting tissue tolerance to pressure. However, most Psychosocial resources include adherence to the therapy
studies identify nutritional status as playing a role in pressure plan, cultural values and beliefs, social support network (fam-
ulcer development. Hypoalbuminemia, weight loss, cachexia, ily and caregiver support), spiritual support, and alternative
and malnutrition are commonly identied as risk factors pre- medicine use. The social support network is a key factor for
disposing patients to pressure ulcer development.2831 Low palliative care. Patients receiving palliative care are often cared
serum albumin levels are associated both with having a pres- for in the home or in a long-term care facility. Home care-
sure ulcer and with developing a pressure ulcer. givers may be family members of the patient, often the spouse
or signicant other. If the patient is older and frail, it is typical
Age to nd that the caregiver is also older and frail, yet responsible
for providing direct care 24 hours a day with minimal respite
Age itself may be a risk factor for pressure ulcer development, or support. Many times the nurse is dealing with two patients,
with age-related changes in the skin and in wound healing the patient receiving palliative care and the patients caregiver,
increasing the risk of pressure ulcer development.32 The skin who may also be frail and in need of services. The family
and support structures undergo changes in the aging process. member may be physically unable to reposition the patient or
There is a loss of muscle, a decrease in serum albumin levels, to provide other care services. In long-term care facilities, the
diminished inammatory response, decreased elasticity, and problem may not be physical inability to perform the tasks but
reduced cohesion between dermis and epidermis.32,33 These lack of time or motivation. The availability of nurse attendants
changes combine with other changes related to aging to make in the long-term care facility may be such that turning and
the skin less tolerant of pressure forces, shear, and friction. repositioning of palliative care patients are not high-priority
tasks.
Medical Conditions and Psychological Factors In summary, environmental resources are not all well dened
and typically are not included in formal risk-assessment tools for
Certain medical conditions or disease states are also asso- development of pressure ulcers. However, the importance of
ciated with pressure ulcer development. Orthopedic in- environmental resources in both the development and healing
juries, altered mental status, and spinal cord injury are such of pressure ulcers is clinically relevant in palliative care.
Use of Risk-Assessment Scales with good sensitivity and specicity demonstrated.16,30 The
Braden Scale is the model used in this chapter for prevention
For practitioners to intervene in a cost-effective way, a method of pressure ulcers in patients requiring palliative care.
of screening for risk factors is necessary. Several risk-assessment Regardless of the instrument chosen to evaluate risk status,
instruments are available to clinicians. Screening tools assist in the clinical relevance is threefold. First, assessment for risk
prevention by distinguishing those persons who are at risk status must occur at frequent intervals. Assessment should
for pressure ulcer development from those who are not. The be performed at admission to the health care organization
only purpose in identifying patients who are at risk for pres- (within 24 hours), at predetermined intervals (usually weekly),
sure ulcer development is to allow for appropriate use of and whenever a signicant change occurs in the patients gen-
resources for prevention. The use of a risk-assessment tool eral health and status. The second clinical implication is the
allows for targeting of interventions to specic risk factors for targeting of specic prevention strategies to identied risk fac-
individual patients. The risk-assessment instrument selected is tors. The nal clinical implication is for those patients in
based on its reliability for the intended raters, its predictive whom prevention is not successful. For patients with an actual
validity for the population, its sensitivity and specicity under pressure ulcer, the continued monitoring of risk status may
consideration, and its ease of use including the time required prevent further tissue trauma at the wound site and develop-
for completion. The most common risk-assessment tools are ment of additional wound sites.
Bradens Scale for Predicting Pressure Sore Risk and Nortons
Scale. There is minimal information on the use of either
instrument in palliative care patients, but both tools have been o]
used in long-term care facilities, where many patients are Prevention of Pressure Ulcers
assumed to be receiving palliative care. This is an area in which
further study is warranted. Prevention strategies are targeted at reducing risk factors and
can be focused on eliminating specic risk factors. Early inter-
Nortons Scale. The Norton tool is the oldest risk-assessment vention for pressure ulcers is risk factor specic and prophy-
instrument. Developed in 1961, it consists of ve subscales: lactic in nature. The prevention strategies are presented here
physical condition, mental state, activity, mobility, and incon- by risk factor, beginning with general information and ending
tinence.39 Each parameter is rated on a scale of 1 to 4, with the with specic strategies to eliminate particular risk factors. Pre-
sum of the ratings for all ve parameters yielding a total score vention is a key element for palliative care. If pressure ulcers
ranging from 5 to 20. Lower scores indicate increased risk, with can be prevented, the patient is spared tiresome, sometimes
scores of 16 or lower indicating onset of risk and scores of 12 painful, and often overwhelming treatment. The Braden Scale
or lower indicating high risk for pressure ulcer formation.40 is the basis for these prevention interventions. Prevention
interventions that are appropriate to the patients level of risk
Braden Scale for Predicting Pressure Sores. The Braden Scale and specic to individual risk factors should be instituted.18
was developed in 1987 and is composed of six subscales that For example, the risk factor of immobility is managed very dif-
conceptually reect degrees of sensory perception, moisture, ferently for the comatose patient compared with the patient
activity, nutrition, friction and shear, and mobility.15,16 All sub- with severe pain on movement or the patient who is still
scales are rated from 1 to 4, except for friction and shear, which mobile even if bed bound. The comatose patient requires care-
is rated from 1 to 3. The subscales may be summed for a total giver education and caregiver-dependent repositioning. The
score ranging from 6 to 23. patient with severe pain on movement requires special sup-
Lower scores indicate lower function and higher risk for port surface intervention and minimal movement methods
development of a pressure ulcer. The cutoff score for hospital- with a foam wedge. The patient who is still mobile but bed
ized adults is considered to be 16, with scores of 16 and lower bound requires self-care education and may be able to per-
indicating at-risk status.16 In older patients, some have found form self-repositioning. The interventions for the risk factor
cutoff scores of 17 or 18 to be better predictors of risk status.15,30 of immobility are very different for these patients.
Levels of risk are based on the predictive value of a positive
test. Scores of 15 to 16 indicate mild risk, with a 50% to 60% Immobility, Inactivity, and Sensory Loss
chance of developing a stage I pressure ulcer; scores of 12 to 14
indicate moderate risk, with 65% to 90% chance of developing Patients who have impaired ability to reposition and who can-
a stage I or II lesion; and scores lower than 12 indicate high not independently change body positions must have local
risk, with a 90% to 100% chance of developing a stage II or pressure alleviated by any of the following: passive reposition-
deeper pressure ulcer.30,34 The Braden Scale has been tested in ing by caregivers, pillow bridging, or pressure relief or reduc-
acute care and long-term care with several levels of nurse tion support surfaces for bed and chair.18,19,34 In addition,
raters and demonstrates high interrater reliability with regis- measures to increase mobility and activity and to decrease
tered nurses. friction and shear should be instituted. This is true for persons
Validity has been established by expert opinion, and pre- receiving palliative care until the terminal stage of the disease
dictive validity has been studied in several acute care settings, process. The difference for those receiving palliative care is the
emphasis on providing adequate pain management as part techniques to make turning patients easier and less time-
of prevention interventions related to movement and reposi- consuming. Turning sheets, draw sheets, and pillows are essen-
tioning. tial for passive movement of patients in bed. Turning sheets
Overhead bed frames with trapeze bars are helpful for are useful in repositioning the patient to a side-lying position.
patients with upper body strength and may increase mobility Draw sheets are used for pulling patients up in bed; they help
and independence with body repositioning. Wheelchair- prevent dragging of the patients skin over the bed surface.
bound patients with upper body strength can be taught and The recommended time interval for a full change of posi-
encouraged to do wheelchair pushups to relieve pressure and tion is every 2 hours, depending on the individual patient pro-
allow for reperfusion of the tissues in the ischial tuberosity le. Similar approaches to repositioning are useful for patients
region. For patients who are weak from prolonged inactivity, in chairs. Full-body change of position involves standing the
providing support and assistance for reconditioning and inpatient and then re-sitting the patient in a chair. Small shifts in
creasing strength and endurance may help prevent further position for those in chairs might involve changing the position
decline.19 Mobility plans for each patient should be individu- of the lower extremities or inserting a small foam pillow or
alized, with the goal of attaining the highest level of mobility wedge. For the chair-bound patient, it is also helpful to use a
and activity possible in light of the goals of overall care. Care- foot stool to help reduce the pressure on the ischial tuberosities
givers in the home are often left to fend for themselves for and to distribute the pressure over a wider surface. Attention to
prevention interventions and may be frail and have health proper alignment and posture is essential. Individuals at risk
problems themselves. A return demonstration of a reposition- for pressure ulcer development should avoid uninterrupted sit-
ing procedure can be very informative to the nurse. The nurse ting in chairs, and clinical practice guidelines suggest reposi-
may need to coach, improvise, and think of creative strategies tioning every hour. The rationale behind the shorter time
for caregivers to use in the home setting to meet the patients frame is the extremely high pressures generated on the ischial
needs for movement and tissue reperfusion. tuberosities in the seated position.42 Those patients with upper-
body strength should be taught to shift weight every 15 min-
Passive Repositioning by Caregiver. Turning schedules and utes, to allow for tissue reperfusion. Again, pillows may be used
passive repositioning by caregivers is the normal intervention to help position the patient in proper body alignment. Physical
response for patients with immobility risk factors. Typically, therapy and occupational therapy can assist in body-alignment
turning schedules are based on time or event. If time-based, strategies with even the most contracted patient.
turning is usually done every 2 hours for full-body change of In many instances, patients receiving palliative care at home
position and more often for small shifts in position. Event- spend much of their time up in recliner chairs. The ability of
based schedules relate to typical events during the day (e.g., recliner chairs to provide a pressure-reduction support surface
turning the patient after each meal). Full-body change of posi- is not known, and individual recliner chairs probably have
tion involves turning the patient to a new lying position, such various levels of pressure-reducing capability. Therefore, it is
as from the right side-lying position to the left side-lying posi- still prudent to institute a repositioning schedule for those using
tion or the supine position. If the side-lying position is used in recliner chairs. Repositioning of patients in recliner chairs is
bed, avoidance of direct pressure on the trochanter is essential. more difcult due to the physical properties of the chair and
To avoid placing pressure on the trochanter, the patient is requires some creativity. The repositioning schedule should
placed in a 30-degree, laterally inclined position instead of the mimic the schedule for those in wheelchairs.
commonly used 90-degree side-lying position, which increases For patients with signicant pain on movement, premed-
tissue compression over the trochanter. The 30-degree, later- ication 20 to 30 minutes before a scheduled large position
ally inclined position allows for distribution of pressure over a change may make routine repositioning more acceptable for
greater area. Small shifts in position involve moving the patient the patient and the family. In those close to death, reposition-
but keeping the same lying position, such as changing the ing schedules may be used solely for maintaining comfort,
angle of the right side-lying position or changing the position with few or no attempts to reposition as a strategy for prevent-
of the lower extremities in the right side-lying position. Both ing skin problems.
strategies are helpful in achieving reperfusion of compressed
tissues, but only a full-body change of position completely Pillow Bridging. Pillow bridging involves the use of pillows
relieves pressure. to position patients with minimal tissue compression. The use
A foam wedge is very useful in positioning for frail care- of pillows can help prevent pressure ulcers from occurring on
givers and for patients with severe pain on movement. The the medial knees, the medial malleolus, and the heels. Pillows
foam wedge should provide a 30-degree angle of lift when fully should be placed between the knees, between the ankles, and
inserted behind the patient, usually extending from the shoul- under the heels.
ders to the hips/buttocks. Once it is in place, even the most Pillow use is especially important for reducing the risk of
frail of caregivers can easily pull the wedge out slightly every development of heel ulcers regardless of the support surface in
hour, providing for small shifts in position and tissue reperfu- use.18 The best prevention strategy for eliminating pressure
sion. Even patients with pain on movement nd the slight ulcers on the heels is to keep the heels off the surface of the
movement from the foam wedge tolerable. There are other bed. Use of pillows under the lower extremities keeps the heel
from making contact with the support surface of the bed. Pil- the standard hospital mattress). Examples of static devices are
lows help to redistribute the pressure over a larger area, thus foam, air, or gel mattress overlays and water-lled mattresses.
reducing high pressures in one specic area. The pillows should The difculties with foam devices include retaining moisture
extend and support the leg from the groin or perineal area to and heat and not reducing shear. Air and water static devices
the ankle. Use of donut-type or ring cushion devices is con- also have difculties associated with retaining moisture and
traindicated. Donut ring cushions cause venous congestion and heat.
edema and actually increase pressure to the area of concern.18 Dynamic support surfaces move. A simple denition of a
dynamic support surface is one that requires a motor or pump
Use of Pressure Relief and Pressure-Reduction Support Sur- and electricity to operate. One example is the alternating-
faces. There are specic guidelines for the use of support sur- pressure air mattress. Most of these devices use an electric
faces to prevent and manage pressure ulcers.4244 Regardless of pump to alternately inate and deate air cells or air columns,
the type of support surface in use, written repositioning and thus the term alternating-pressure air mattress. The key to
turning schedules remain essential. Support surfaces serve as determining effectiveness is the length of time over which
adjuncts to strategies for positioning and careful monitoring cycles of ination and deation occur. Dynamic support sur-
of patients. The type of support surface chosen is based on a faces may also have difculties with moisture retention and
multitude of factors, including clinical condition of the patient, heat accumulation.42 Dynamic devices may be preferable for
type of care setting, ease of use, maintenance, cost, and char- palliative care patients, especially those with signicant pain
acteristics of the support surface. The primary concern should on movement, because they may help with tissue reperfusion
be the therapeutic benet to the palliative care patient. Table when patients cannot be turned because of pain. When using
16A1 categorizes the types of support surfaces available and pressure-reduction devices, the caregiver must ensure that the
their general performance characteristics.42 device is functioning properly and that the patient is receiving
pressure reduction.
Pressure-Reducing Support Surfaces. Pressure-reduction devices One concern when using mattress overlays, whether they
lower tissue interface pressures but do not consistently main- are static or dynamic, is the bottoming-out phenomenon.
tain interface pressures below capillary closing pressures in all Bottoming-out occurs when the patients body sinks down,
positions on all body locations. Pressure-reducing support the support surface is compressed beyond function, and the
surfaces are indicated for patients who are at risk for pressure patients body lies directly on the hospital mattress. When
ulcer development, who can be turned, and who have skin bottoming-out occurs, there is no pressure reduction for the
breakdown involving only one sleep surface.18,19 Patients with bony prominence of concern. Bottoming-out typically hap-
an existing pressure ulcer who are at risk for development of pens when the patient is placed on a static air mattress overlay
further skin breakdown should be managed on a pressure- that is not appropriately lled with air or when the patient has
reducing support surface. been on a foam mattress for extended periods. The nurse can
Pressure-reduction devices can be classied as static or monitor for bottoming-out by inserting a at, outstretched
dynamic. Static devices do not move; they reduce pressure by hand between the overlay and the patients body part at risk.
spreading the load over a larger area. A simple denition of a If the caregiver feels less than an inch of support material,
static support surface is one that does not require electricity to the patient has bottomed-out. It is important to check for
function, usually a mattress overlay (which is placed on top of bottoming-out when the patient is in various body positions
Table 16A1
Selected Characteristics for Classes of Support Surface
Static
High Air Alternating Flotation Standard
Performance Loss (Air Low Air Air (Air or Hospital
Characteristics Fluidized) Loss (Dynamic) Water) Foam Mattress
Increased support area Yes Yes Yes Yes Yes No

Low moisture retention Yes Yes No No No No
Reduced heat accumulation Yes Yes No No No No
Shear reduction Yes ? Yes Yes No No
Pressure reduction Yes Yes Yes Yes Yes No
Dynamic Yes Yes Yes No No No
Cost per day High High Moderate Low Low Low
Source: Bergstrom et al. (1994), reference 42.

and to check at various body sites. For example, when the weight on an existing pressure ulcer and without
patient is lying supine, check the sacral/coccygeal area and the bottoming-out.
heels; and when the patient is side-lying, check the trochanter 3. Use a dynamic support surface if the patient cannot
and lateral malleolus.42 assume a variety of positions without bearing
weight on an existing pressure ulcer, if the patient
Pressure-Relieving Support Surfaces. Pressure-relief devices fully compresses the static support surface, or if the
consistently reduce tissue interface pressures to a level below pressure ulcer does not show evidence of healing.
capillary closing pressure in any position and in most body 4. If a patient has large stage III or stage IV pressure
locations. Pressure-relief devices are indicated for patients ulcers on multiple turning surfaces, a low air loss bed
who are at high risk for pressure ulcer development and who or a uidized air (high air loss) bed may be indicated.
cannot turn independently or have skin breakdown involving 5. If excessive moisture on intact skin is a potential
more than one body surface. Most commonly, pressure-relief source of maceration and skin breakdown, a sup-
devices are grouped into low air loss, uidized air or high air port surface that provides airow can be important
loss, and kinetic devices. These devices often assist with pain in drying the skin and preventing additional pres-
control as well as relieving pressure. sure ulcers.
Low air loss therapy devices use a bed frame with a series of 6. Any individual who is at risk for developing pres-
connected air-lled pillows with surface fabrics of low-friction sure ulcers should be placed on a static or dynamic
material. The amount of pressure in each pillow can be con- pressure-reducing support surface.
trolled and calibrated to provide maximal pressure relief for
the individual patient. These devices provide pressure relief in Seating Support Surfaces. Support surfaces for chairs and
any position, and most models have built-in scales. Low air wheelchairs can be categorized similarly to support surfaces
loss therapy devices that are placed on top of standard hospi- for beds. In general, providing adequate pressure relief for
tal mattresses may be of particular benet for palliative care chair-bound or wheelchair-bound patients is critical. The
patients at home. patient at risk for pressure ulcer formation is at increased risk
Fluidized air or high air loss therapy devices consist of bed in the seated position because of the high pressures across the
frames containing silicone-coated glass beads and incorporate ischial tuberosities. Most pressure-reducing devices for chairs
both air and uid support. The beads become uid when air is are static overlays, such as those made out of foam, gel, air, or
pumped through the device, making them behave like a liquid. some combination. Positioning of chair- or wheelchair-bound
High air loss therapy has bactericidal properties due to the alka- individuals must include consideration of individual anatomy
linity of the beads (pH 10), the temperature, and entrapment of and body contours, postural alignment, distribution of weight,
microorganisms by the beads. High air loss therapy relieves balance, and stability in addition to pressure relief.
pressure and reduces friction, shear, and moisture (due to the
drying effect of the bed). These devices cause difculties when Reducing Friction and Shear
transferring patients because of the bed frame. The increased
airow can increase evaporative uid loss, leading to dehydra- Measures to reduce friction and shear relate to passive or
tion. Finally, if the patient is able to sit up, a foam wedge may be active movement of the patient. To reduce friction, several
required, limiting the benecial effects of the bed on the upper interventions are appropriate. Providing topical prepara-
back. In palliative care cases, use of high air loss therapy is typi- tions to eliminate or reduce the surface tension between the
cally not indicated for pressure ulcers alone but may be indi- skin and the bed linen or support surface assists in reducing
cated for patients with signicant pain as well as pressure ulcers. friction-related injury. To lessen friction-induced skin break-
down, appropriate techniques must be used when moving
Support Surface Selection. Determining which support sur- patients so that skin is never dragged across the linens. Patients
face is best for a particular patient can be confusing. The pri- who exhibit voluntary or involuntary repetitive body move-
mary concern must always be the effectiveness of the surface ments (particularly movements of the heels or elbows) require
for the individual patients needs. The Agency for Healthcare stronger interventions. Use of a protective lm such as a trans-
Research and Quality (AHRQ, formerly Agency for Health parent lm dressing or a skin sealant, a protective dressing
Care Policy and Research [AHCPR]) recommends the follow- such as a thin hydrocolloid, or protective padding helps to
ing criteria as guidelines for determining how to manage tis- eliminate the surface contact of the area and decrease the fric-
sue loading and support surface selection.18 tion between the skin and the linens.19 Even though heel,
ankle, and elbow protectors do nothing to reduce or relieve
1. Assess all patients with existing pressure ulcers to pressure, they can be effective aids against friction.
determine their risk for developing additional pres- Most shear injury can be eliminated by proper positioning,
sure ulcers. If the patient remains at risk, use a such as avoidance of the semi-Fowler position and limited
pressure-reducing surface. use of upright positions (i.e., positions more than 30 degrees
2. Use a static support surface if the patient can inclined). Avoidance of upright positions may prevent sliding-
assume a variety of positions without bearing and shear-related injuries. Use of foot boards and knee Gatch
(or pillows under the lower leg) to prevent sliding and to available. The inadequate evidence base leaves clinicians to
maintain position is also helpful in reducing shear effects on rely on expert opinion and their own clinical experience. Per-
the skin. Observation of the patient when sitting is also impor- haps the best advice is to look at the whole clinical picture
tant, because the patient who slides out of the chair is at rather than focusing only on the wound. Viewing the pressure
equally high risk for shear injury. Use of footstools and the ulcer as a part of the whole, within the contextual circum-
foot pedals on wheelchairs, together with appropriate 90- stances of the patient, should provide some assistance in deter-
degree exion of the hip (which may be achieved with the use mining how aggressive to be in providing nutrition. The
of pillows, special seat cushions, or orthotic devices) can help overriding concern in palliative care is to provide for comfort
prevent chair sliding. and to minimize symptoms. If providing supplemental nutri-
tion aids in providing comfort to the patient and is mutually
Nutrition agreed upon by the patient, family caregivers, and health care
provider, then supplemental nutrition (in any form) is very
Nutrition is an important element in maintaining healthy skin appropriate for palliative wound care. If the patients condi-
and tissues. There is a strong relationship between nutrition tion is such that to provide supplemental nutrition (in any
and pressure ulcer development.28 The severity of pressure form) increases discomfort and the prognosis is expected to be
ulceration is also correlated with severity of nutritional decits, poor and rapid, then providing supplemental nutrition should
especially low protein intake and low serum albumin lev- not be a concern and is not appropriate for palliative wound
els.28,30,31 Nutritional assessment is key in determining the care. It is important to remember that little evidence exists for
appropriate interventions for the patient. A short nutritional either of these viewpoints, yet expert opinions on the topic
assessment should be performed at routine intervals on all abound.
patients who are determined to be at risk for pressure ulcer
formation. Managing Moisture
Malnutrition may be diagnosed if the serum albumin level
is lower than 3.5 mg/dL, the total lymphocyte count is less than The preventive interventions related to moisture include gen-
1800 cells/mm3, or body weight has decreased by more than eral skin care, accurate diagnosis of incontinence type, and
15%.42 Malnutrition impairs the immune system, and total appropriate incontinence management.
lymphocyte counts are a reection of immune competence. If
the patient is diagnosed as malnourished, nutritional supple- General Skin Care. General skin care involves routine skin
mentation should be instituted to help achieve a positive assessment, incontinence assessment and management, skin
nitrogen balance. Examples of oral supplements are assisted hygiene interventions, and measures to maintain skin health.
oral feedings and dietary supplements. Tube feedings have not Routine skin assessment involves observation of the patients
been effective for patients with pressure ulcers. The goal of skin, with particular attention to bony prominences. Red-
care is to provide approximately 30 to 35 calories per kilogram dened areas should not be massaged. Massage can further
of weight per day and 1.25 to 1.5 g of protein per kilogram of impair the perfusion to the tissues.
weight per day.42 It may be difcult for a pressure ulcer patient
or an at-risk patient to ingest enough protein and calories nec- Incontinence Management. Volumes have been written about
essary to maintain skin and tissue health. Oral supplements various incontinence management techniques. This discus-
can be very helpful in boosting calorie and protein intake, but sion is meant to serve as a stepping stone to those resources
they are designed only to be an adjunct to regular oral intake. available to clinicians concerning management of inconti-
Monitoring of nutritional indices is helpful to determine the nence. It does not include all management strategies and only
effectiveness of the care plan. Serum albumin, protein mark- briey mentions several strategies that are most pertinent to
ers, body weight, and nutritional assessment should be per- palliative care patients at high risk of development of pressure
formed every 3 months to monitor for changes in nutritional ulcers. Management of incontinence is dependent on assess-
status if appropriate. ment and diagnosis of the problem (see Chapter 14).
In palliative care, nutrition can be a major risk factor for
pressure ulcer development. Nutritional supplementation Incontinence Assessment. Assessment of incontinence should
may not be possible in all cases; however, if the patient can tol- include history of the incontinence, including patterns of
erate it, supplementation should be encouraged if it is in keep- elimination, characteristics of the urinary stream or fecal
ing with the overall goals of care. Involvement of a dietitian mass, and sensation of bladder or rectal lling. The physical
during the early assessment of the patient is important to the examination is designed to gather specic information related
overall success of the plan. Maintenance of adequate nutrition to bladder or rectal functioning and therefore is limited in
to prevent pressure ulcer development and to repair existing scope. A limited neurological examination should provide
pressure ulcers in palliative care patients is fraught with differ- data on the mental status and motivation of the patient and
ing opinions. The issue is how to balance nutritional needs caregiver, specic motor skills, and condition of back and lower
for skin care without providing articial nutrition to prolong extremities. The genitalia and perineal skin are assessed for
life. One of the problems in this area is the limited research signs of perineal skin lesions and perineal sensation.
The environmental assessment should include inspection There are special containment devices for fecal inconti-
of the patients home or nursing home facility to evaluate for nence as well. Fecal incontinence collectors consist of a self-
the presence of environmental barriers to continence. A void- adhesive skin barrier attached to a drainable pouch. Application
ing/defecation diary is very helpful in planning the treatment of the device is somewhat dependent on the skill of the clini-
and management of incontinence. In cognitively impaired cian. To facilitate success, the patient should be put on a rou-
patients, the caregiver may complete the diary, and manage- tine for changing the pouch before leakage occurs. The skin
ment strategies can be identied from the baseline data. barrier provides a physical obstacle to keep the stool away
from the skin and helps to prevent dermatitis and associated
Incontinence Management Strategies. Palliative care patients skin problems. Skin barrier wafers without an attached pouch
who are at risk for pressure ulcer development may be candi- can be useful in protecting the skin from feces or urine.
dates for behavioral management strategies for incontinence. Use of moisturizers for dry skin and use of lubricants for
Incontinence in palliative care patients may be successfully reduction of friction injuries are also recommended skin care
managed with scheduled toileting. Scheduled toileting is care- strategies.18 Moisture barriers are used to protect the skin from
giver dependent and requires a motivated caregiver to be suc- the effects of moisture. Although products that provide a mois-
cessful. Adequate uid intake is an important component of a ture barrier are recommended, the reader is cautioned that the
scheduled toileting program. recommendation is derived from usual practice and clinical
Scheduled toileting, or habit training, is toileting at practice guidelines and is not research based. The success of
planned time intervals. The goal is to keep the patient dry by the particular product is linked to how it is formulated and the
assisting him or her to void at regular intervals. There can be hydrophobic properties of the product.25 Generally, pastes are
attempts to match the interval to the individual patients nat- thicker and more repellent of moisture than ointments. As a
ural voiding schedule. There is no systematic effort to moti- quick evaluation, one can observe the ease with which the
vate patients to delay voiding or to resist the urge to void. product can be removed with water during routine cleansing:
Scheduled toileting may be based on the clock (e.g., toileting if the product comes off the skin with just routine cleansing, it
every 2 hours) or on activities (e.g., toileting after meals and probably is not an effective barrier to moisture. Mineral oil
before transferring to bed). may be used for cleansing some of the heavier barrier products
Underpads and briefs may be used to protect the skin of (e.g., zinc oxide paste) to ease removal from the skin.
patients who are incontinent of urine or stool. These products
are designed to absorb moisture, wick the wetness away from
the skin, and maintain a quick-drying interface with the skin. o]
Studies in both infants and adults demonstrate that products Pressure Ulcer Assessment
that are designed to present a quick-drying surface to the skin
and to absorb moisture do keep the skin drier and are associ- The foundation for designing a palliative care plan for the
ated with a lower incidence of dermatitis.45 The critical feature patient with a pressure ulcer is a comprehensive assessment.
is the ability to absorb moisture and present a quick-drying Comprehensive assessment includes assessment of wound sever-
surface, not whether the product is disposable or reusable. ity, wound status, and the total patient.
Regardless of the product chosen, containment strategies
imply the need for a check-and-change schedule for the incon- Wound Severity
tinent patient, so that wet linens and pads may be removed in
a timely manner. Underpads are not as tight or constricting as Assessment of wound severity refers to the use of a classica-
briefs. Kemp25 suggested alternating use of underpads and tion system for diagnosing the severity of tissue trauma by
briefs. This recommendation echoes the early work of Willis,46 determining the tissue layers involved in the wound. Classi-
who studied warm-water immersion syndrome and found that cation systems such as staging pressure ulcers provide com-
the effects of water on the skin could be diminished by allow- munication regarding wound severity and the tissue layers
ing the skin to dry out between wet periods. Use of briefs when involved in the injury.
the patient is up in a chair, ambulating, or visiting and use of Pressure ulcers are commonly classied according to grad-
underpads when the patient is in bed is one suggestion for ing or staging systems based on the depth of tissue destruc-
combining the strengths of both products.25 tion. The National Pressure Ulcer Advisory Panel (NPUAP)
External collection devices may be more effective with male recommended the use of a universal four-stage classication
patients. External catheters or condom catheters are devices system to describe depth of tissue damage. Staging systems
applied to the shaft of the penis that direct the urine away measure only one characteristic of the wound and should not
from the body and into a collection device. Newer models be viewed as a complete assessment independent of other
of external catheters are self-adhesive and easy to apply. For indicators. Staging systems are best used as a diagnostic tool
patients with a retracted penis, a special pouching system, sim- for indicating wound severity. Table 16A2 presents pressure
ilar to an ostomy pouch, is available. A key concern with the ulcer staging criteria according to the NPUAP. Pressure-
use of external collection devices is routine removal of the induced skin damage that manifests as purple, blue, or black
product for inspection and hygiene of the skin. areas of intact skin may represent deep tissue injury (DTI).
Table 16A2
Pressure Ulcer Staging Criteria
Pressure Ulcer
Stage Denition
Stage I An observable pressure-related alteration of intact skin whose indicators, as
compared with the adjacent or opposite area on the body, may include
changes in one or more of the following:
skin temperature (warmth or coolness)
tissue consistency (rm or boggy feel)
sensation (pain, itching)
The ulcer appears as a dened area of persistent redness in lightly
pigmented skin, whereas in darker skin tones, the ulcer may appear
with persistent red, blue, or purple hues.
Stage II Partial-thickness skin loss involving epidermis or dermis or both. The ulcer
is supercial and presents clinically as an abrasion, blister, or shallow crater.
Stage III Full-thickness skin loss involving damage or necrosis of subcutaneous
tissue, which may extend down to, but not through, underlying fascia. The
ulcer presents clinically as a deep crater with or without undermining of
adjacent tissue.
Stage IV Full-thickness skin loss with extensive destruction, tissue necrosis, or
damage to muscle bone or supporting structures (such as tendon,
joint capsule).
Source: National Pressure Ulcer Advisory Panel (1995), reference 47.
These lesions commonly occur on heels and the sacrum and Healing (PUSH)48 and the Bates-Jensen Wound Assessment
signal more severe tissue damage below the skin surface. DTI Tool (BWAT, revised Pressure Sore Status Tool).49
lesions reect tissue damage at the bony tissue interface and The PUSH tool incorporates surface area measurements,
may progress rapidly to large tissue defects. exudate amount, and surface appearance. These wound char-
acteristics were chosen based on principal component analysis
Wound Status to dene the best model of healing.48 The clinician measures
the size of the wound, calculates the surface area (length times
Pressure ulcer assessment is the base for maintaining and eval- width), and chooses the appropriate size category on the tool
uating the therapeutic plan of care. Assessment of wound sta- (0 to 10). Exudate is evaluated as none (0), light (1), moderate
tus involves evaluation of multiple wound characteristics. (2), or heavy (3). Tissue type choices include closed (0), epithe-
Initial assessment and follow-up assessments at regular inter- lial tissue (1), granulation tissue (2), slough (3), and necrotic
vals to monitor progress or deterioration of the sore are neces- tissue (4). The three subscores are then summed for a total
sary to determine the effectiveness of the treatment plan. score.48
Adequate assessment is important even when the goal of care Reliability testing of the tool with a large sample is under
is comfort, not healing. The assessment data enable clinicians way.48 The PUSH tool may offer a quick assessment to predict
to communicate clearly about a patients pressure ulcer, pro- healing outcomes. The PUSH tool is best used as a method of
vide for continuity in the plan of care, and allow evaluation of prediction of wound healing. Therefore, it may not be the best
treatment modalities. Assessment of wound status should be tool for palliative care patients, because healing is not an
performed weekly and whenever a signicant change is noted expected outcome of care. Assessment of additional wound
in the wound. Assessment should not be confused with moni- characteristics may still be needed, to develop a treatment plan
toring of the wound at each dressing change. Monitoring of for the pressure ulcer. The BWAT includes additional wound
the wound can be performed by less skilled caregivers, but characteristics that may be helpful in designing a plan of care
assessment should be performed on a routine basis by health for the wound.
care practitioners. Use of a systematic approach with a com- The BWAT or Pressure Sore Status Tool (Figure 16A2),
prehensive assessment tool is helpful. developed in 1990 by Bates-Jensen50 and revised in 2001, eval-
There are few tools available that encompass multiple uates 13 wound characteristics with a numerical rating scale
wound characteristics to evaluate overall wound status and and rates them from best to worst possible. The BWAT is rec-
healing. Two available tools are the Pressure Ulcer Scale for ommended as a method of assessment and monitoring of
BATES-JENSEN WOUND ASSESSMENT TOOL NAME
Complete the rating sheet to assess wound status. Evaluate each item by picking the response that best describes the
wound and entering the score in the item score column for the appropriate date.
Location: Anatomic site. Circle, identify right (R) or left (L) and use "X" to mark site on body diagrams:
Sacrum & coccyx Lateral ankle
Trochanter Medial ankle
Ischial tuberosity Heel Other Site
Shape: Overall wound pattern; assess by observing perimeter and depth.
Circle and date appropriate description:

Irregular Linear or elongated
Round/oval Bowl/boat
Square/rectangle Butterfly Other Shape
Date Date Date

Item Assessment Score Score Score
1. Size 1 = Length x width <4 sq cm
2 = Length x width 4<16 sq cm
3 = Length x width 16.1<36 sq cm
4 = Length x width 36.1<80 sq cm
5 = Length x width >80 sq cm
2. Depth 1 = Non-blanchable erythema on intact skin
2 = Partial thickness skin loss involving epidermis &/or dermis
3 = Full thickness skin loss involving damage or necrosis of
subcutaneous tissue; may extend down to but not through
underlying fascia; &/or mixed partial & full thickness &/or tissue
layers obscured by granulation tissue
4 = Obscured by necrosis
5 = Full thickness skin loss with extensive destruction, tissue necrosis or
damage to muscle, bone or supporting structures
3. Edges 1 = Indistinct, diffuse, none clearly visible
2 = Distinct, outline clearly visible, attached, even with wound base
3 = Well-defined, not attached to wound base
4 = Well-defined, not attached to base, rolled under, thickened
5 = Well-defined, fibrotic, scarred or hyperkeratotic
4. Under- 1 = None present
mining 2 =Undermining < 2 cm in any area
3 = Undermining 24 cm involving < 50% wound margins
4 = Undermining 24 cm involving > 50% wound margins
5 = Undermining > 4 cm or tunneling in any area
5. Necrotic 1 = None visible
Tissue 2 = White/grey non-viable tissue &/or non-adherent yellow slough
Type 3 = Loosely adherent yellow slough
4 = Adherent, soft, black eschar
5 = Firmly adherent, hard, black eschar
6. Necrotic 1 = None visible
Tissue 2 = < 25% of wound bed covered
Amount 3 = 25% to 50% of wound covered
4 = > 50% and < 75% of wound covered
5 = 75% to 100% of wound covered
Figure 16A-2. The Bates-Jensen Wound Assessment Tool (BWAT) for measuring pressure
sore status.
313
Date Date Date
Item Assessment Score Score Score
7. Exudate 1 = None
Type 2 = Bloody
3 = Serosanguineous: thin, watery, pale red/pink
4 = Serous: thin, watery, clear
5 = Purulent: thin or thick, opaque, tan/yellow, with or without odor
8. Exudate 1 = None, dry wound
Amount 2 = Scant, wound moist but no observable exudate
3 = Small
4 = Moderate
5 = Large
9. Skin 1 = Pink or normal for ethnic group
Color 2 = Bright red &/or blanches to touch
Sur- 3 = White or grey pallor or hypopigmented
rounding 4 = Dark red or purple &/or non-blanchable
Wound 5 = Black or hyperpigmented
10. Peripheral 1 = No swelling or edema
Tissue 2 = Non-pitting edema extends <4 cm around wound
Edema 3 = Non-pitting edema extends 4 cm around wound
4 = Pitting edema extends < 4 cm around wound
5 = Crepitus and/or pitting edema extends 4 cm around wound
11. Peripheral 1 = None present
Tissue 2 = Induration < 2 cm around wound
Induration 3 = Induration 24 cm extending < 50% around wound
4 = Induration 24 cm extending 50% around wound
5 = Induration > 4 cm in any area around wound
12. Granu- 1 = Skin intact or partial thickness wound
lation 2 = Bright, beefy red; 75% to 100% of wound filled &/or tissue overgrowth
Tissue 3 = Bright, beefy red; < 75% & > 25% of wound filled
4 = Pink &/or dull, dusky red &/or fills 25% of wound
5 = No granulation tissue present
13. Epithe- 1 = 100% wound covered, surface intact
lializa- 2 = 75% to <100% wound covered &/or epithelial tissue
tion extends >0.5cm into wound bed
3 = 50% to <75% wound covered &/or epithelial tissue
extends to <0.5cm into wound bed
4 = 25% to < 50% wound covered
5 = < 25% wound covered
TOTAL SCORE
SIGNATURE
WOUND STATUS CONTINUUM
1 5 10 13 15 20 25 30 35 40 45 50 55 60
Tissue Wound Wound
Health Regeneration Degeneration
Plot the total score on the Wound Status Continuum by putting an "X" on the line and the date beneath the line. Plot
multiple scores with their dates to see-at-a-glance regeneration or degeneration of the wound.
Figure 16A-2. (continued)

314
pressure ulcers and other wounds. It is a pencil-and-paper well dened and sharply outlines the ulcer, with little or no
instrument comprising 15 items: location, shape, size, depth, evidence of new tissue growth. In long-standing pressure
edges, undermining or pockets, necrotic tissue type, necrotic ulcers, brosis and scarring result from repeated injury and
tissue amount, exudate type, exudate amount, surrounding repair, with the edges hyperpigmented, indurated, and rm59
skin color, peripheral tissue edema, peripheral tissue indura- and possible impairment in the migratory ability of epithelial
tion, granulation tissue, and epithelialization. Two items, loca- cells.60 Pressure ulcers in palliative care may show signicant
tion and shape, are nonscored. The remaining 13 are scored tissue damage, and the edges may indicate areas of full-
items, and each appears with characteristic descriptors rated thickness tissue loss with other areas of partial-thickness dam-
on a scale of 1 (best for that characteristic) to 5 (worst attribute age. In palliative care, pressure ulcers may be present for
of the characteristic). It is recommended that wounds be prolonged periods with no change in the wound; the wound
scored initially for a baseline assessment and at regular inter- edges often exhibit hemosiderin staining or hyperpigmenta-
vals to evaluate therapy. Once a lesion has been assessed for tion in conjunction with their rolled-under and thickened
each item on the BWAT, the 13 item scores can be added to appearance.
obtain a total score for the wound. The total score can then be When assessing edges, the nurse should look at the clarity
monitored to determine at a glance the progress in healing and distinctness of the wound outline. With edges that are
or degeneration of the wound. Total scores range from 13 (skin indistinct and diffuse, there are areas in which the normal tis-
intact but always at risk for further damage) to 65 (profound sues blend into the wound bed and the edges are not clearly
tissue degeneration). Appendix 16A1 presents the instruc- visible. Edges that are even with the skin surface and the
tions for use of the BWAT. wound base are attached to the base of the wound. This means
Reliability of the tool has been evaluated in an acute care that the wound is at, with no appreciable depth. Well-dened
setting with enterostomal therapy (ET) nurses (nurses with edges, on the other hand, are clear and distinct and can be out-
additional training in wound care)51 and in long-term care lined easily on a transparent piece of plastic. Edges that are
with a variety of health care professionals and one ET nurse not attached to the base of the wound imply a wound with
expert in wound assessment.52 Interrater reliability ranged some depth of tissue involvement. A crater or bowl or boat
from r = 0.915 (P = 0.0001) for the ET nurses51 to 0.78% agree- shape indicates a wound with edges that are not attached to
ment for the variety of health care professionals.52 The BWAT the wound base. The wound has walls or sides. There is depth
or the Pressure Sore Status Tool is the most widely used of the to the wound.
instruments available. As the wound ages, the edges become rolled under and
thickened to palpation. The edge achieves a unique hyperpig-
Wound Characteristics mented coloring due to hemosiderin staining. The pigment
turns a gray or brown color in both dark- and light-skinned
Adequate initial wound assessment should encompass a persons. Long-standing wounds may continue to thicken, with
composite of wound characteristics, which forms a base for scar tissue and brosis developing in the wound edge, causing
differential diagnosis, therapeutic intervention, and future the edge to feel hard, rigid, and indurated. The wound edges
reassessment comparisons.53 The indices for wound assess- are evaluated by visual inspection and palpation.
ment include all of the following: location, size of ulcer, depth
of tissue involvement, stage or classication, condition of Undermining and Tunneling. The terms undermining and tun-
wound edges, presence of undermining or tunneling, necrotic neling refer to the loss of tissue underneath an intact skin sur-
tissue characteristics, exudate characteristics, surrounding tis- face. Undermining, or pocketing, usually involves a greater
sue conditions, and wound healing characteristics of granula- percentage of the wound margins and more shallow length,
tion tissue and epithelialization.5458 Wound characteristics of compared with tunneling. Undermining usually involves sub-
concern for the palliative care patient include wound edges, cutaneous tissues and follows the fascial planes next to the
undermining and tunneling, necrotic tissue characteristics, wound.
exudate characteristics, and surrounding tissue conditions. Wounds with undermining have more aerobic and anaero-
These ve characteristics, as well as healing attributes of gran- bic bacteria than do wounds that are in the process of healing
ulation tissue and epithelialization, are discussed in the fol- with no undermining.61 The degree and amount of undermin-
lowing sections. ing indicate the severity of tissue necrosis. As subcutaneous fat
degenerates, wound pockets develop. Initially, deep fascia lim-
Edges or Margins. Wound edge, or margin, includes character- its the depth of pocketing, encouraging more supercial inter-
istics of distinctness, degree of attachment to the wound base, nal spread of undermining. Once the fascia is penetrated,
color, and thickness. In pressure ulcers, as tissues degenerate, undermining of deeper tissues may proceed rapidly.59 Internal
broad and indistinct areas, in which the wound edge is diffuse dimensions of wound undermining are commonly measured
and difcult to observe, become shallow lesions with edges with the use of cotton-tipped applicators and gentle probing
that are more distinct, thin, and separate. As tissue trauma of the wound. There are also premeasured devices that can be
from pressure progresses, the reaction intensies with a thick- inserted under the wound edge and advanced into the deeper
ening and rolling inward of the epidermis, so that the edge is tissues to aid in determination of the extent of undermining.
Undermining and wound pockets should be assessed by Eschar Signies Deeper Tissue Damage. Eschar may be black,
inserting a cotton-tipped applicator under the wound edge, gray, or brown in color. It is usually adherent or rmly adher-
advancing it as far as it will go without using undue force, rais- ent to the wound tissues and may be soggy, soft or hard, or
ing the tip of the applicator so that it may be seen or felt on the leathery in texture. A soft, soggy eschar is usually strongly
surface of the skin, marking the surface with a pen, and mea- attached to the base of the wound but may be lifting from (and
suring the distance from the mark on the skin to the edge of loose from) the edges of the wound. A hard, crusty eschar is
the wound. This process is continued all around the wound. strongly attached to the base and edges of the wound. Hard
Then the percentage of the wound involved is determined eschars are often mistaken for scabs. Sometimes nonviable tis-
with the help of a transparent metric measuring guide with sue appears before a wound is apparent. This can be seen as a
concentric circles divided into quadrants. Another noninva- white or gray area on the surface of the skin. The area usually
sive method of assessment of wound pockets is the use of demarcates within a day or two, when the wound appears and
ultrasound to evaluate the undermined tissues. Ultrasonogra- interrupts the skin surface.
phy provides a visual picture of the impaired tissues and can Necrotic tissue retards wound healing because it is a
be repeated to monitor for improvement. medium for bacterial growth and a physical obstacle to epi-
dermal resurfacing, wound contraction, and granulation. The
Necrotic Tissue Type and Amount. Necrotic tissue charac- greater the amount of necrotic tissue present in the wound
teristics of color, consistency, adherence, and amount present bed, the more severe the insult to the tissue and the longer the
in the wound must be incorporated into wound assessment. time required to heal the wound. The amount of necrotic tis-
As tissues die during wound development, they change in sue usually affects the amount of exudate from the wound and
color, consistency, and adherence to the wound bed. The level causes wound odor, both of which are distressing to the
and type of tissue death inuence the clinical appearance of patient and to caregivers. Because of the amount of necrotic
the necrotic tissue. For example, as subcutaneous fat tissues tissue present, modications of treatment and debridement
die, a collection of stringy, yellow slough is formed. As muscle techniques may be made. The depth of the wound cannot be
tissues degenerate, the dead tissue may be more thick or tena- assessed in the presence of necrosis that blocks visualization of
cious. the total wound.
The characteristic necrotic tissue type is a qualitative The amount of necrotic tissue present in the wound is one
variable, with most clinicians using descriptions of clinical of the easier characteristics to assess. The nurse uses a trans-
observations of a composite of factors as a method of assess- parent measuring guide with concentric circles divided into
ment. The characteristics of color, consistency, and adherence quadrants laying it over the wound. The percentage of necro-
are most often used to describe the type of necrosis. Color sis present is judged by looking at each quadrant. The judg-
varies, as necrosis worsens, from white/gray nonviable tissue, ments from each quadrant are added to determine the total
to yellow slough, and nally to black eschar. Consistency refers percentage of the wound involved. Alternatively, the length
to the cohesiveness of the debris (i.e., thin or thick, stringy or and width of the necrotic tissue may be measured to deter-
clumpy). Consistency also varies on a continuum as the mine the surface area involved in the necrosis.
necrotic area deepens and becomes more dehydrated.
The terms slough and eschar refer to different levels of Exudate Type and Amount. Wound exudate (also known as
necrosis and are described according to color and consistency. wound uid, wound drainage) is an important assessment
A slough is described as yellow (or tan) and as thin, mucinous, feature, because the characteristics of the exudate help the cli-
or stringy, whereas eschar is described as black, and as soft or nician to diagnose signs of wound infection, to evaluate appro-
hard; eschar represents full-thickness tissue destruction. Adher- priateness of topical therapy, and to monitor wound healing.
ence refers to the adhesiveness of the debris to the wound bed Wound infection retards wound healing and must be treated
and the ease with which the two may be separated. Necrotic aggressively. Proper assessment of wound exudate is also
tissue tends to become more adherent to the wound bed as the important because it afrms the bodys brief, normal inam-
level of damage increases. Clinically, eschar is more rmly matory response to tissue injury. Accurate assessment and
adherent than is yellow slough. diagnosis of wound exudate and infection are critical compo-
Necrotic tissue is assessed for color, consistency, and adher- nents of effective wound management. One of the main goals
ence to the wound bed. The predominant characteristic present of palliative wound care is to prevent infection and to control
in the wound should be chosen for assessment. Necrotic tissue exudate, because these conditions lead to discomfort from the
type changes as it ages in the wound, as debridement occurs, wound.
and as further tissue trauma causes increased cellular death. The healthy wound normally has some evidence of mois-
Slough usually is nonadherent or loosely adherent to the ture on its surface. Healthy wound uid contains enzymes and
healthy tissues of the wound bed. By denition, nonadherent growth factors, which may play a role in promoting reepithe-
tissue appears scattered throughout the wound; it appears as lialization of the wound and provide needed growth factors for
if the tissue could easily be removed with gauze. Loosely adher- all phases of wound repair. The moist environment produced
ent tissue is attached to the wound bed; it is thick and stringy by wound exudate allows efcient migration of epidermal cells
and may appear as clumps of debris attached to wound tissue. and prevents wound desiccation and further injury.62,63
In pressure ulcers, increased exudate is a response to the might determine that 50% percent of the hydrocolloid dress-
inammatory process or infection. Increased capillary perme- ing was involved with wound drainage over a 4-day wearing
ability causes leakage of uids and substrates into the injured period. Based on the data, the clinician might quantify the
tissue. When a wound is present, tissue uid leaks out of the judgment for this type of dressing, length of dressing wear
open tissue. This uid normally is serous or serosanguineous. time, and wound cause as being a minimal amount of exu-
In the infected wound, the exudate may thicken, become date. Clinical judgment of the amount of wound drainage
purulent in nature, and continue to be present in moderate to requires some experience with expected wound exudate out-
large amounts. Examples of exudate character changes in put in relation to phase of wound healing and type of wound,
infected wounds are the presence of Pseudomonas, which pro- as well as knowledge of absorptive capacity and normal wear
duces a thick, malodorously sweet-smelling, green drainage,64 time of topical dressings.
or Proteus infection, which may have an ammonia-like odor. Certain characteristics of exudate indicate wound degener-
Wounds with foul-smelling drainage are generally infected or ation and infection. If signs of cellulitis (erythema or skin dis-
filled with necrotic debris, and healing time is prolonged as tis- coloration, edema, pain, induration, purulent drainage) are
sue destruction progresses.61 Wounds with signicant amounts present at the wound site, the exudate amount may be copious
of necrotic debris often have a thick, tenacious, opaque, puru- and seropurulent or purulent in character. The amount of
lent, malodorous drainage in moderate to copious amounts. exudate remains high or increases, and the character may
True wound exudate must be differentiated from necrotic tis- change to frank purulence, with further wound degeneration.
sue that sloughs off the wound as a result of debridement Wound infection must be considered in these cases.
efforts. Exudate from sloughing necrotic tissue is commonly Pressure ulcers manifest with a variety of wound exudate
attached to or connected with the necrotic debris; frequently, types and amounts. In partial-thickness pressure ulcers, the
the only method of differentiation is adequate debridement of wound exudate is most likely to be serous or serosanguineous
necrotic tissue from the wound site. Liqueed necrotic tissue in nature and to be present in minimal to moderate amounts.
occurs most often as a result of enzymatic or autolytic debride- In clean full-thickness pressure ulcers, the wound exudate
ment. Often, removal of the necrotic tissue reduces the amount is similar, with minimal to moderate amounts of serous to
and changes the character of wound exudate. serosanguineous exudate. As healing progresses in the clean
Exudate should be assessed for the amount and type of full-thickness pressure ulcer, the character of the exudate
drainage that occurs. The type and color of wound exudate changes; it may become bloody if the fragile capillary bed is
vary depending on the degree of moisture in the wound and disrupted, and it lessens in amount.
the organisms present. Characteristics used to examine exu- For full-thickness pressure ulcers with necrotic debris,
date are color, consistency, adherence, distribution in the wound exudate is dependent on the presence or absence of
wound, and presence of odor. infection and the type of therapy instituted. Exudate may
Estimating the amount of exudate in the wound is diffi- appear moderate to large but, in fact, is related to the amount
cult due to wound size variability and topical dressing types. of necrotic tissue present and to liquefaction of the debris in
One problem with assessment of exudate amount is the size of the wound. Typically, the necrotic full-thickness pressure ulcer
the wound. What might be considered a large amount of manifests with serous to seropurulent wound exudate in mod-
drainage for a smaller wound may be considered a small amount erate to large amounts. With appropriate treatment, the
for a larger wound, making clinically meaningful assessment wound exudate amount may temporarily increase, as the char-
of exudate difcult. acter gradually assumes a serous nature.
Certain dressing types interact with or trap wound uid to
create or mimic certain characteristics of exudate, such as Surrounding Tissue Condition. The tissues surrounding the
color and consistency of purulent drainage. For example, both wound should be assessed for color, induration, and edema. The
hydrocolloid and alginate dressings mimic a purulent drainage tissues surrounding the wound are often the rst indication of
on removal of the dressing. Preparation of the wound site for impending further tissue damage and are a key gauge of success-
appropriate assessment involves removal of the wound dress- ful prevention strategies. Color of the surrounding skin may
ing and cleansing with normal saline to remove dressing debris indicate further injury from pressure, friction, or shearing. The
in the wound bed, followed by evaluation of the wound for tissues within 4 cm of the wound edge should be assessed. Dark-
true exudate. skinned persons show the colors bright red and dark red as a
Although it is not a part of exudate assessment, evaluation deepening of normal skin color or a purple or blacker hue. As
of the wound dressing provides the clinician with valuable data healing occurs in dark-skinned persons, the new skin is pink and
about the effectiveness of treatment. Evaluation of the percent- may never darken. In both light- and dark-skinned patients, new
age of the wound dressing involved with wound drainage dur- epithelium must be differentiated from tissues that are erythe-
ing a specic time frame is helpful for clinical management that matous. To assess for blanchability in light-skinned patients, the
includes dressings beyond traditional gauze. In estimating the nurse presses rmly on the skin with a nger, then lifts the nger
percentage of the dressing involved with the wound exudate, and looks for blanching, or sudden whitening, of the tissues
clinical judgment must be quantied by putting a number to followed by prompt return of color to the area. Nonblanchable
visual assessment of the dressing. For example, the clinician erythema signals more severe tissue damage.
Edema in the surrounding tissues delays wound healing in the edges contract, and the wound is resurfaced by epithelial-
the pressure ulcer. It is difcult for neoangiogenesis, or growth ization. Therefore, epithelialization may occur throughout
of new blood vessels into the wound, to occur in edematous tis- the wound bed in partial-thickness wounds but only from the
sues. Again, tissues within 4 cm of the wound edge are assessed. wound edges in full-thickness wounds.
Nonpitting edema appears as skin that is shiny and taut, almost Epithelialization can be assessed by evaluating the amount
glistening. Pitting edema is identied by rmly pressing a n- of the wound that is surrounded by new tissue and the dis-
ger down into the tissues and waiting for 5 seconds; on release tance to which new tissue extends into the wound base.
of pressure, tissues fail to resume their previous position and an Epithelialization appears as pink or red skin. Visualization of
indentation appears. Crepitus is the accumulation of air or gas the new epithelium takes practice. A transparent measuring
in tissues. The clinician should measure how far edema extends guide is used to help determine the percentage of wound
beyond the wound edges. involvement and the distance to which the epithelial tissue
Induration is a sign of impending damage to the tissues. extends into the wound.
Along with skin-color changes, induration is an omen of fur-
ther pressure-induced tissue trauma. Tissues within 4 cm of Monitoring the Wound. In palliative care, monitoring of the
the wound edge are assessed. Induration is an abnormal rm- wound is important, to continue to meet the goals of comfort
ness of tissues with margins. The nurse should palpate where and reduction in wound pain and wound symptoms such as
the induration starts and where it ends by gently pinching the odor and exudate. Evaluation of wound characteristics at
tissues. Induration results in an inability to pinch the tissues. scheduled intervals allows the nurse to revise the treatment
Palpation proceeds from healthy tissue, moving toward the plan as appropriate and often provides an indication of the
wound margins. It is usual to feel slight rmness at the wound overall health of the patient. In many cases, the pressure ulcer
edge itself. Normal tissues feel soft and spongy; induration worsens as death approaches and as the patients condition
feels hard and rm to the touch. worsens. The skin may be the rst organ to actually fail, with
other systems following the downward trend. Progressive
Granulation Tissue and Epithelialization. Granulation and monitoring is also important to determine whether the treat-
epithelial tissues are markers of wound health. They signal the ment is effectively controlling odor, managing exudate, pre-
proliferative phase of wound healing and usually foretell venting infection, and minimizing painthe goals of wound
wound closure. Granulation tissue is the growth of small care during palliative care.
blood vessels and connective tissue into the wound cavity. It is
more observable in full-thickness wounds because of the tis- Total Patient Assessment
sue defect that occurs in such wounds. In partial-thickness
wounds, granulation tissue may occur so quickly, and in con- Comprehensive assessment includes assessment of the total
cert with epithelialization, or skin resurfacing, that it is unob- patient as well as of wound severity and wound status. Gener-
servable in most cases. The granulation tissue is healthy when ally, diagnosis and management of the wound are best accom-
it is bright, beefy-red; shiny; and granular with a velvety plished within the context of the whole person. Comprehensive
appearance. The tissue looks bumpy and may bleed easily. assessment includes a focused history and physical examina-
Unhealthy granulation tissue, resulting from poor vascular tion, attention to specic laboratory and diagnostic tests, and
supply, appears pale pink or blanched to a dull, dusky red. a pain assessment. Table 16A3 presents an overview of assess-
Usually, the rst layer of granulation tissue to be laid down in ment for the patient with a pressure ulcer.
the wound is pale pink and, as the granulation tissue deepens It is important to obtain a focused history and physical
and thickens, the color becomes bright, beefy red. examination as part of the initial assessment. The patient his-
The percentage of the wound that is lled with granulation tory determines which relevant systems reviews are needed in
tissue and the color of the tissue are characteristics indicative the physical examination. The goals for treatment and the
of the health of the wound. The clinician makes a judgment as direction of care (e.g., curative with a goal of wound closure,
to what percent of the wound has been lled with granulation palliative with a goal of reduced wound pain) can be deter-
tissue. This is much easier if there is some past history with the mined with, at a minimum, the following patient history
wound. If the wound has been monitored by the same person information: reason for admission to care facility or agency;
over multiple observations, it is simple to judge the amount of expectations and perceptions about wound healing; psycho-
granulation tissue present. If the initial observation was done logical, social, cultural, and economic history; presence of
by a different observer or if the data are not available, the cli- medical comorbidities; current wound status; and previous
nician simply must use his or her best judgment to determine management strategies.
the amount of tissue present. The systems review portion of the patient history and
Partial-thickness wounds heal by epidermal resurfacing and physical examination provides information on comorbidities
regeneration. Epithelialization occurs via lateral migration at that may impair wound healing. Specic comorbidities such
the wound edges and the base of hair follicles as epithelial cells as diabetes,6568 vascular disease,69,70 and immunocompro-
proliferate and resurface the wound. Full-thickness wounds heal mise7173 have been related to impaired healing. The individ-
by scar formation: the tissue defect lls with granulation tissue, uals capacity to heal may be limited by specic disease effects
Table 16A-3
Pressure Ulcer Assessment Overview
Assessment
Parameter Assessment Methods Notes & Considerations Frequency
Wound Pressure ulcer staging classication Provides diagnosis of severity Baseline, initial observation
severity Partial vs. full thickness classication of tissue insult of wound
Reassess if wound
deteriorates
Does not change over time
Wound status Evaluate wound characteristics Use of standardized tool is Baseline or initially
(location, size, shape, depth, edges, easiest: Pressure Sore Status Weekly
undermining, and tunneling), Tool (BWAT) Whenever signicant change
necrotic tissue characteristics, in wound status is noted
exudate characteristics, surrounding
skin characteristics, granulation
tissue and epithelialization
Total patient:
History Interview or patient Look for relevant systems to Baseline data
questionnaire. Include review of then include in physical
systems and specic questions: examination
Goals for care?
Reason for admission to facility?
Expectations about wound progress?
Psychosocial, cultural,
economic history?
Presence of medical comorbidities?
Previous wound treatments?
Physical Focus on items identied Focus on areas that would Baseline data
examination during patient history affect wound healing, such as
disease effects on tissue
perfusion, tissue integrity,
mobility, nutrition, and
risk for infection
Laboratory Nutritional parameters: Specic tests depend on Baseline or initially
and serum albumin individual patient Every 3 months
diagnostic tests Tissue perfusion: arterial blood for nutritional
gases, hemoglobin and hematocrit, markers, tissue perfusion
blood glucose levels, glycosylated markers
hemoglobin If performing self-blood
glucose monitoring,
daily levels are helpful
Pain Assess for wound pain before Use 010 point scale, Baseline or initially
and during procedures and with 0 = no pain and Every day as needed
when no procedure is occurring 10 = worst pain ever, and Before and during procedures
have patient state level of such as dressing changes,
pain. For nonverbal patients, debridement, or repositioning
observe for grimacing,
pulling away, crying out,
or withdrawal
on tissue integrity and perfusion, patient mobility, nutrition, and tissue oxygenation and perfusion. Nutritional parameters
and risk for wound infection. Therefore, throughout the typically include evaluation of serum albumin. Serum albumin
patient history, systems review, and physical examination, the is a measure of protein available for healing; a normal level is
clinician considers host factors that affect wound healing. greater than 3.5 mg/dL. Clinicians should evaluate laboratory
Specic laboratory and diagnostic tests in a comprehensive values such as arterial blood gases to assess tissue perfusion
assessment include data on nutrition, glucose management, and oxygenation abilities. Review of laboratory values is
prudent to determine the level of diabetic control. Normal Nutritional Support. Because many studies have linked mal-
glucose levels are 80 mg/dL. Concentrations of 180 to 250 mg/dL nutrition with pressure ulcers, adequate nutritional support is
or higher indicate that glucose levels are out of control. The an important part of pressure ulcer management. Figure
nurse should look specically for a fasting blood glucose con- 16A3 presents the nutritional assessment and support algo-
centration lower than 140 mg/dL and a glycosylated hemoglo- rithm for pressure ulcer management from the AHRQ guide-
bin concentration (HgbA1C) lower than 7%. The HgbA1C lines. The clinician must ensure that dietary intake is adequate
helps to determine the level of glucose control the patient has in the patient with a pressure ulcer. Prevention of malnutri-
had over the last 2 to 3 months. tion reduces the patients risk for further tissue trauma related
The nal aspect of the comprehensive assessment is pain to pressure or impaired wound healing. As noted in the dis-
assessment. Pain is thought to be an important factor in heal- cussion of prevention, maintenance of adequate nutrition in
ing. Until recently, chronic wound pain was largely ignored as the palliative care patient may not be possible.
a cofactor in healing. Krasner74 proposed a chronic wound
pain experience model and described the typical pain experi- Management of Tissue Loads. Management of tissue loads
ences for persons with chronic wounds in four categories: refers to care related to those with pressure ulcers who are at
noncyclic acute wound pain (e.g., sharp debridement), cyclic risk for development of additional pressure ulcers. Figure
acute wound pain (e.g., with daily dressings or repositioning), 16A4 presents an algorithm for management of tissue loads
and chronic wound pain (e.g., persistent pain with no wound with support surfaces algorithm. This is an important part of
manipulation). Krasner74 suggested that the model is best used pressure ulcer treatment, because many individuals with a
as a guide for assessment, intervention, and evaluation. pressure ulcer are at risk for further pressure-induced tissue
Wound pain is evaluated by having the patient rate the pain trauma. More information on support surfaces and manage-
on a numerical scale from 0 to 10, with 0 equal to no pain and ment of tissue loads was presented in the earlier discussion of
10 equal to the worst pain ever felt, or by use of a visual analog prevention of pressure ulcers. It is important to understand
scale. Patients who are nonverbal are observed for withdrawal, that the goal of managing tissue loads in the palliative care
grimacing, crying out, or other nonverbal signs of pain. Pain patient is to ease suffering and discomfort from the wound.
assessments should be done before and during wound proce- Use of pressure-reduction devices, such as alternating air mat-
dures, such as dressing changes or debridement, and also at tresses, is particularly appropriate for palliative care.
times when the dressing is intact and no procedures are in
progress. The patient or caregiver should be encouraged to keep Ulcer Care: Debridement. Direct pressure ulcer care involves
a pain diary, because the data may be valuable in evaluating adequate debridement of necrotic material, management of
changes in wound pain over time. The focused history, physical bacterial colonization and infection, wound cleansing, and
examination, evaluation of laboratory and diagnostic data, and selection of topical dressings. Figure 16A5 presents an algo-
pain assessment provide the context for the wound itself and, rithm for ulcer care.
along with wound severity and wound status assessment, the Adequate debridement of necrotic tissue is necessary for
basis for pressure ulcer treatment. Total patient assessment wound healing. Necrotic debris in the wound bed forms an
should also encompass evaluation of treatment appropriate- obstacle to healing and provides a medium for bacterial growth.
ness in light of the overall condition of the patient and the The patients condition and the goals of care determine the
goals of palliative care. method of debridement. Sharp, mechanical, enzymatic, or
autolytic debridement techniques may be used if there is no
urgent need for drainage or removal of devitalized material
o] from the wound. In the presence of advancing cellulitis, sepsis,
Pressure Ulcer Management or large and adherent amounts of necrotic debris, sharp
debridement should be performed. In palliative care, debride-
Pressure ulcer management can be based on clinical practice ment is still important, because the removal of nonviable mate-
guidelines. Existing guidelines are helpful in developing a pal- rial decreases wound odor. In the case of the black eschar that
liative care plan. The existing guidelines are broad based and forms on heels, debridement may not be necessary. Observation
general and, as such, form a good basis for wound care when of the black heel with attention to the development of patho-
the goal is comfort as well as when the goal is healing. logical signs such as erythema, drainage, odor, or bogginess of
In the United States, most pressure ulcer care is based on the the tissues is necessary. If signs of erythema, drainage, odor, or
1994 AHRQ algorithms for treatment.42 The guidelines present a bogginess appear, then the heel eschar must be debrided.
general approach to use in developing a care plan for the patient Mechanical debridement includes the use of wet-to-dry
with a pressure ulcer. Although they were published in 1994, the dressings at specic intervals, hydrotherapy, or wound irriga-
general principles of ulcer management remain the same. Pres- tion. Of these three methods, wound irrigation is the most
sure ulcer care is focused on nutritional assessment and sup- favorable for wound healing. Wet-to-dry dressings are not
port, management of tissue loads, and ulcer care, including favorable because of the time and labor involved in perform-
management of bacterial colonization and infection.42 These ing the dressing technique correctly and the potential for pain.
general guidelines are also appropriate for palliative care. Wet-to-dry dressings are not recommended for palliative care
Figure 16A-3. Nutritional assessment and support algorithm from

the United States Agency for Health Care Policy and Research
(AHCPR). TLC, total lymphocyte count; TPN, total parenteral
Figure 16A-4. Management of tissue loads algorithm from the
nutrition. Source: From Bergstrom et al. (1994), reference 42, with
United States Agency for Healthcare Research and Quality (AHRQ),
permission.
formerly the Agency for Health Care Policy and Research (AHCPR).
Source: From Bergstrom et al. (1994), reference 42, with permission.
because of the frequency of dressing changes and the increased Autolytic debridement may be used in conjunction with other
potential for wound pain. Hydrotherapy or whirlpool treat- debridement methods such as intermittent sharp debridement
ments may be helpful for wounds with large amounts of or wound irrigation. Again, autolytic debridement may be
necrotic debris adherent to healthy tissues. In these cases, particularly effective for palliative care. Autolytic debridement
hydrotherapy helps to loosen the material from the wound has the added benet of decreased frequency of dressing
bed for easier removal with sharp debridement. changes (typically every 3 to 5 days), so the suffering associated
Enzymatic debridement is performed by applying a topical with dressing changes is diminished.
agent containing an enzyme that destroys necrotic tissue.
Enzymatic debridement should be considered if the patient is Ulcer Care: Bacterial Colonization and Infection. Open pres-
not a candidate for sharp debridement or is in long-term care sure ulcers are typically colonized with bacteria. In most cases,
or home care. Enzymes may be used alone or in conjunction adequate debridement and wound cleansing prevent the bac-
with other debridement techniques. Enzymatic debridement terial colonization from proceeding to the point of clinical
may be an appropriate method for palliative care, because the infection. Figure 16A6 presents a preferred pathway for man-
frequency of dressing changes is usually once a day and the agement of bacterial colonization and infection. Wound man-
method is easy to use in conjunction with periodic sharp agement can be enhanced in pressure ulcers by attention to
debridement. debridement of necrotic debris and adequate wound cleans-
Autolytic debridement involves the use of moisture-retentive ing. These two steps alone are often sufcient to prevent wound
dressings to cover the wound and allow necrotic tissue to self- infection in pressure ulcers, because they remove the debris
digest from enzymes normally found in wound uid or exudate. that supports bacterial growth.42 Prevention of infection is an
Figure 16A-5. Ulcer care algorithm from the United States Agency
for Healthcare Research and Quality (AHRQ), formerly the
Agency for Health Care Policy and Research (AHCPR). Figure 16A-6. Managing bacterial colonization and infection
Source: From Bergstrom et al. (1994), reference 42, with permission. algorithm from the United States Agency for Healthcare Research
and Quality (AHRQ), formerly the Agency for Health Care Policy
important goal for the palliative care patient. Use of prolonged and Research (AHCPR). Source: From Bergstrom et al. (1994), refer-
ence 42, with permission.
silver-release topical dressings helps control wound surface
bacteria and is effective against a broad range of pathogens,
including methicillin-resistant Staphylococcus aureus (MRSA). patients discomfort. Topical antiseptics, such as povidone
Identication of infection is best accomplished by clinical iodine, iodophor, sodium hypochlorite, hydrogen peroxide, and
assessment. Routine swab cultures should not be used to iden- acetic acid, do not signicantly reduce the number of bacteria in
tify infection in most pressure ulcers. Swab cultures simply wound tissue; however, they do harm the healthy wound tis-
reect the bacterial contamination on the surface of the wound sues.42 As such, these substances usually have no place in the
and may not truly identify the organisms causing tissue infec- treatment of clean pressure ulcers. In wounds lled with necrotic
tion. The recommended technique for diagnosis of tissue debris, antiseptic/antimicrobial solutions may be used for a
infection in pressure ulcers is needle aspiration or tissue biopsy.42 short course of therapy (typically 2 weeks), to assist with surface
An alternative method involves use of surface swabs. After bacteria and odor reduction, and then evaluated for further use.
cleansing the wound with normal saline to remove any dress-
ing debris, the nurse swabs a 1 cm2 area of the wound bed with Ulcer Care: Wound Cleansing. Cleansing of a wound assists
the surface swab for 5 seconds, until tissue uid is apparent healing because it removes necrotic tissue, excess wound exu-
on the swab, and then sends the swab directly to the laboratory. date, and metabolic wastes from the wound bed. Wound heal-
This technique may better reect actual bacterial invasion of ing is optimized and the potential for wound infection is
the wound tissues than standard swab methods do. decreased when wound cleansing is a part of the treatment
Use of topical antimicrobial solutions is not indicated for plan for pressure ulcers. Wound cleansing involves the selec-
clean pressure ulcers. Indeed, most topical antimicrobial solution of a solution for cleansing and a method of delivering the
tions are toxic to the broblast, which is the cell responsible for solution to the wound. Routine wound cleansing should be
wound healing and may cause a burning sensation, adding to the accomplished with minimal trauma to the wound bed. Wounds
should be cleansed initially and at each dressing change. Mini- Wounds with small or minimal amounts of exudate can
mal force should be applied when using gauze, sponges, or cloth benet from a variety of dressings, including hydrocolloids,
to clean the wound bed. Skin cleansers and antimicrobial solu- hydrogels, thin lm dressings, and foam dressings. Wounds
tions are not indicated as solutions for cleaning pressure ulcers with moderate amounts of exudate may require dressings with
because they destroy the healthy wound tissues and are toxic to a higher absorptive capacity, such as hydrocolloids, foam
the broblast cell.42 Normal saline is the preferred solution, dressings, hydrogel sheet dressings, or composite dressings
because it is physiological and will not harm healing tissues. (those including a combination of products, such as a thin
When wound irrigation is used to cleanse wounds, the irri- lm with a foam island in the center). Wounds with a large
gation pressure should fall within the range of 4 to 15 pounds amount of drainage require dressings that are capable of
per square inch (psi). Higher pressures may drive bacteria absorbing it, such as calcium alginates, alginate collagen com-
deeper into wound tissues or cause additional wound trauma. binations, or specic beads, pastes, or powders designed to
A 35-mL syringe with a 19-gauge angiocatheter delivers saline handle large amounts of drainage. Wounds with signicant
at 8 psi and is an effective method for removing bacteria from odor benet from dressings formulated with charcoal, such as
the wound bed. charcoal foam and dressings with a charcoal lter overlay.
If a wound shows a signicant loss of tissue or if under-
Ulcer Care: Dressings. In general, moisture-retentive wound mining or pockets are present, the wound cavities should be
dressings are the most appropriate type for pressure ulcers. For loosely lled with dressing to eliminate the potential for
palliative care, they are the dressings of choice because of the abscess formation. Eliminating the dead space helps to prevent
decreased frequency of required changes (typically every 3 to premature wound closure with resulting abscess formation.
5 days). The goal of the wound dressing is to provide an envi- Dressings such as calcium alginates, impregnated hydrogel
ronment that keeps the wound bed tissue moist and the gauze strips, or wound cavity llers are useful for eliminating
surrounding intact skin dry. Use of moist wound healing the dead space. Loose lling of the undermined areas also
dressings supports a better rate of healing than use of dry assists with exudate management, because these wounds tend
gauze dressings42; more importantly in palliative care, moist to have large amounts of exudate.
wound healing dressings contain odor, absorb exudate, and Wounds in the sacral area require additional protection
minimize dressing change discomfort. Clinical judgment is from stool or urine contamination. Because dressings near the
needed to determine the best dressing for the wound. The anus may be difcult to maintain, the clinician must monitor
appropriate dressing should keep the surrounding intact skin dressings in this area more frequently. Some hydrocolloid
dry while controlling wound exudate and should provide a dressings have been designed with specic shapes to improve
minimal amount of pain during dressing changes. their ability to stay in place over sacral/coccygeal wounds.
The clinician must be aware of the absorptive capacity and Wound pain must be managed with the same attention given
pain reduction properties of the major dressing types. In to choice of wound dressings. In general, pain that is moderate
general, thin lm dressings have no absorptive capacity and to severe should be managed pharmacologically (see Chapters 5
minimize pain by covering exposed nerve endings. Thin lm and 6). The pressure ulcer alone may not require continuous
dressings are adherent to the skin surrounding the wound and pharmacological analgesia, but medication before procedures
sometimes to the wound itself, making dressing removal more is essential. Lower levels of pain may be manageable with
likely to be painful. Hydrocolloids, hydrogels, and foam dress- appropriate wound dressing choice and topical wound analge-
ings typically have a minimal to moderate absorptive capacity. sia. Techniques useful for noncyclic and cyclic wound pain
Hydrocolloid dressings are occlusive and reduce pain by pre- associated with procedures (e.g., debridement, dressing
venting exposure of the wound to air. They have adhesive changes) include use of distraction (e.g., talking to the patient
properties and can cause pain if removed improperly. Foam while performing the procedure), allowing the patient to call a
dressings are moderately absorptive and nonadherent, result- time-out during the procedure, allowing the patient to con-
ing in reduced pain during dressing changes. Hydrogel dress- trol and participate in the procedure, providing opioids
ings are cool and soothing and are particularly effective in and/or nonsteroidal anti-inammatory drugs 30 minutes
wounds that induce a burning sensation. Hydrogel dressings before the procedure and afterwards, and administering topi-
are nonadherent, reducing wound pain during dressing changes. cal anesthetics or topical opioids using hydrogels as a trans-
Calcium alginates, alginate collagen dressings, and exudate port media. The lidocaine patch 5% (Lidoderm) blocks
absorbing beads, flakes, pastes, or powders absorb large sodium channels and has been approved for postherpetic neu-
amounts of drainage. Dressings with a large absorptive capac- ralgia. It is effective for chronic neuropathic pain. Another
ity reduce pain related to maceration of surrounding tissues option is EMLA cream (eutectic mixture of lidocaine 2.5% and
and to pressure caused by the excess exudate. Calcium algi- prilocaine 2.5%), which reduces debridement pain scores and
nates and exudate-absorbing dressings are nonadherent and might have a vasoactive effect cutaneously.7578 Low-dose topi-
are easily removed from the wound during dressing changes. cal morphine was been used successfully in two small pilot
Soft silicone dressings absorb minimal amounts of drainage studies to control pressure ulcerrelated pain.79,80
but are nonadherent and reduce pain associated with dressing As evidenced by this discussion, attention to multiple wound
changes. characteristics helps to determine the most appropriate wound
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o] appendix 16a-1
Bates-Jensen Wound Assessment Tool
General Guidelines:
Fill out the attached rating sheet to assess a wounds status after reading the definitions and methods of assessment
described below. Evaluate once a week and whenever a change occurs in the wound. Rate according to each item by
picking the response that best describes the wound and entering that score in the item score column for the appropriate
date. When you have rated the wound on all items, determine the total score by adding together the 13-item scores.
The HIGHER the total score, the more severe the wound status. Plot total score on the Wound Status Continuum to
determine progress.
Specific Instructions:
1. Size: Use ruler to measure the longest and widest aspect of the wound surface in centimeters; multiply length
x width.
2. Depth: Pick the depth, thickness, most appropriate to the wound using these additional descriptions:
1= tissues damaged but no break in skin surface.
2= superficial, abrasion, blister or shallow crater. Even with, &/or elevated above skin surface (e.g.,
hyperplasia).
3= deep crater with or without undermining of adjacent tissue.
4= visualization of tissue layers not possible due to necrosis.
5= supporting structures include tendon, joint capsule.
3. Edges: Use this guide:

Indistinct, diffuse = unable to clearly distinguish wound outline.
Attached = even or flush with wound base, no sides or walls present; flat.
Not attached = sides or walls are present; floor or base of wound is deeper than edge.
Rolled under, thickened = soft to firm and flexible to touch.
Hyperkeratosis = callous-like tissue formation around wound & at edges.
Fibrotic, scarred = hard, rigid to touch.
4. Undermining: Assess by inserting a cotton tipped applicator under the wound edge; advance it as far as it will
go without using undue force; raise the tip of the applicator so it may be seen or felt on the surface of the skin;
mark the surface with a pen; measure the distance from the mark on the skin to the edge of the wound.
Continue process around the wound. Then use a transparent metric measuring guide with concentric circles
divided into 4 (25%) pie-shaped quadrants to help determine percent of wound involved.
5. Necrotic Tissue Type: Pick the type of necrotic tissue that is predominant in the wound according to color,
consistency and adherence using this guide:
White/gray non-viable tissue = may appear prior to wound opening; skin surface is
white or gray.
Non-adherent, yellow slough = thin, mucinous substance; scattered throughout
wound bed; easily separated from wound tissue.
Loosely adherent, yellow slough = thick, stringy, clumps of debris; attached to wound
tissue.
Adherent, soft, black eschar = soggy tissue; strongly attached to tissue in center or
base of wound.
Firmly adherent, hard/black eschar = firm, crusty tissue; strongly attached to wound base
and edges (like a hard scab).
6. Necrotic Tissue Amount: Use a transparent metric measuring guide with concentric circles divided into 4
(25%) pie-shaped quadrants to help determine percent of wound involved.
7. Exudate Type: Some dressings interact with wound drainage to produce a gel or trap liquid. Before assessing
exudate type, gently cleanse wound with normal saline or water. Pick the exudate type that is predominant in
the wound according to color and consistency, using this guide:
Bloody = thin, bright red
Serosanguineous = thin, watery pale red to pink
Serous = thin, watery, clear
Purulent = thin or thick, opaque tan to yellow
Foul purulent = thick, opaque yellow to green with offensive odor
8. Exudate Amount: Use a transparent metric measuring guide with concentric circles divided into 4 (25%) pie-
shaped quadrants to determine percent of dressing involved with exudate. Use this guide:
None = wound tissues dry.
Scant = wound tissues moist; no measurable exudate.
Small = wound tissues wet; moisture evenly distributed in wound; drainage
involves < 25% dressing.
Moderate = wound tissues saturated; drainage may or may not be evenly distributed
in wound; drainage involves > 25% to < 75% dressing.
Large = wound tissues bathed in fluid; drainage freely expressed; may or may not
be evenly distributed in wound; drainage involves > 75% of dressing.
9. Skin Color Surrounding Wound: Assess tissues within 4 cm of wound edge. Dark-skinned persons show
the colors "bright red" and "dark red" as a deepening of normal ethnic skin color or a purple hue. As healing
occurs in dark-skinned persons, the new skin is pink and may never darken.
10. Peripheral Tissue Edema & Induration: Assess tissues within 4 cm of wound edge. Non-pitting edema
appears as skin that is shiny and taut. Identify pitting edema by firmly pressing a finger down into the tissues
and waiting for 5 seconds, on release of pressure, tissues fail to resume previous position and an indentation
appears. Induration is abnormal firmness of tissues with margins. Assess by gently pinching the tissues.
Induration results in an inability to pinch the tissues. Use a transparent metric measuring guide to determine
how far edema or induration extends beyond wound.
11. Granulation Tissue: Granulation tissue is the growth of small blood vessels and connective tissue to fill in
full thickness wounds. Tissue is healthy when bright, beefy red, shiny and granular with a velvety appearance.
Poor vascular supply appears as pale pink or blanched to dull, dusky red color.
12. Epithelialization: Epithelialization is the process of epidermal resurfacing and appears as pink or red skin.
In partial thickness wounds it can occur throughout the wound bed as well as from the wound edges. In full
thickness wounds it occurs from the edges only. Use a transparent metric measuring guide with concentric
circles divided into 4 (25%) pie-shaped quadrants to help determine percent of wound involved and to
measure the distance the epithelial tissue extends into the wound.
2001 Barbara Bates-Jensen

16Bo] Barbara M. Bates-Jensen, Susie Seaman, and Lynne Early
Skin Disorders: Tumor Necrosis,

Fistulas, and Stomas
This constant drainage smells so bad, and my skin is so sore, life isnt worth livingI dont belong
among people.A palliative care patient
Key Points o]o]o]

Management of drainage and odor are key components of palliative TUMOR NECROSIS
care for malignant cutaneous wounds or tumor necrosis.
Palliative care for the person with an ostomy is focused on Denition
maintenance of an efcient management plan and provision for
optimal functional capacity. Tumor necrosis, also known in the literature as fungating
It is essential to involve caregivers and family members in the plan tumors, ulcerative malignant wounds, or malignant cutaneous
of care. wounds, presents both a physical and an emotional challenge
for the patient and even the most experienced clinician. These
wounds are frequently associated with pain, odor, bleeding, and
an unsightly appearance. They may be a blow to self-esteem and
may cause social isolation just when the patient needs more
time with loved ones. The goals in the care of patients with
tumor necrosis include pain management; control of exudate,
odor, and bleeding; and prevention of infection.
Malignant cutaneous lesions occur in up to 5% of patients
with cancer and 10% of patients with metastatic disease. Look-
ingbill and colleagues1 retrospectively reviewed data accumu-
lated over a 10-year period from the tumor registry at Hershey
Medical Center in Pennsylvania. Of 7316 patients, 367 (5.0%)
had cutaneous malignancies. Of these, 38 patients had lesions
as a result of direct local invasion, 337 had metastatic lesions,
and 8 had both. A secondary analysis from the same registry
found that 420 patients (10.4%) of 4020 with metastatic dis-
ease had cutaneous involvement.2 In women, the most com-
mon origins of metastasis were breast carcinoma (70.7%) and
melanoma (12.0%). In men, melanoma (32.3%), lung carci-
noma (11.8%), and colorectal cancer (11.0%) accounted for the
most common primary tumors. Although these types of can-
cer account for the majority of skin involvement, it is impor-
tant to note that metastatic cutaneous lesions may arise from
any type of malignant tumor.3,4
Pathophysiology of Tumor Necrosis
Tumor necrosis may occur from inltration of the skin by local

invasion of a primary tumor or by metastasis from a distant
329
site.5 Local invasion may initially manifest as inammation with Wounds secondary to tumor necrosis are expected to change
induration, redness, heat, tenderness, or some combination of over time based on the aggressiveness of the cancer and whether
these features. The skin may have a peau dorange appearance the patient is undergoing palliative surgery, chemotherapy,
and may be xed to underlying tissue. As the tumor spreads and or radiation. Although palliative treatment may result in regres-
further tissue destruction occurs, the skin eventually ulcerates. sion or even disappearance of the cutaneous lesion, it can be
The presentation differs in metastatic cutaneous inltration. expected to recur eventually.10 Ongoing assessment allows the
Tumor cells detach from the primary site and travel via blood clinician to tailor the local wound management based on the
or lymphatic vessels, or tissue planes, to distant organs, includ- current needs of the patient and wound.
ing the skin.3,4 These lesions may initially manifest as well-
demarcated, painless nodules ranging in size from a few Tumor Necrosis Management
millimeters to several centimeters. Their consistency may vary
from rm to rubbery. Pigmentation changes may be noted over The goals of care for patients with tumor necrosis include
the lesions, from deep red to brown-black. Over time, these control of infection and odor, management of exudate, pre-
nodules may ulcerate, drain, and become very painful. vention and control of bleeding, and management of pain. In
As both locally invasive and metastatic lesions extend, determining the appropriate treatment regimen, the abilities
changes in vascular and lymphatic ow lead to edema, exu- of the caregiver must also be considered. The limited infor-
date, and tissue necrosis.5,6 The resulting lesion may be fungat- mation on treatment effectiveness reects the absence of
ing, in which the tumor mass extends above the skin surface evidence-based care in this area and the extreme need for fur-
with a fungus or cauliower-like appearance, or it may be ero- ther research and dissemination of ndings. Many articles are
sive and ulcerative.7 The wound bed may be pale to pink with based on expert opinion and the personal experience of prac-
very friable tissue, completely necrotic, or a combination of titioners knowledgeable in palliative and hospice care. Although
both. The surrounding skin may be erythematous, fragile, and research-based treatment is the gold standard of care, anec-
exceedingly tender to touch. The skin may also be macerated dotal reports on successful treatment of these challenging
in the presence of excessive wound exudate. The presence of wounds is helpful to nurses striving to provide the best care.
necrotic tissue is an ideal culture medium for bacterial colo-
nization, which results in signicant malodor.8 The degree of Infection and Odor Control. Control of infection and odor is
pain experienced by the patient depends on wound location, achieved by controlling local bacterial colonization with wound
depth of tissue invasion and damage, nerve involvement, and cleansing, wound debridement, and use of local antibiotic
the patients previous experience with pain and analgesia.7 agents. Because malignant cutaneous lesions are frequently
associated with necrotic tissue and odor, wound cleansing is
Tumor Necrosis Assessment essential to remove necrotic debris, decrease bacterial counts,
and thus reduce odor. If the lesion is not very friable, the patient
Assessment of tumor necrosis provides the clinician with may be able to get in the shower. This not only provides for local
information to develop a treatment plan, adjust the treatment cleansing but also gives the added psychological benet of help-
plan as assessment parameters change, and observe for wound ing the patient to feel clean. The patient should be instructed to
complications. Specically, wound location, size, appearance, allow the shower water to hit the skin above the wound and then
exudate, odor, and condition of the surrounding skin guide run over the wound. If there is friable tissue (i.e., tissue that
local therapy. Associated symptoms should be noted so that bleeds easily with minimal trauma) or the patient is not able to
appropriate measures can be taken to provide comfort. The shower, the nurse or caregiver should gently irrigate the wound
potential for serious complications such as hemorrhage, vessel with normal saline or a commercial wound cleanser. Skin
compression or obstruction, or airway obstruction should be cleansers, which contain mild soaps and antibacterial ingredi-
noted so that the caregiver can be educated regarding their ents used in bathing, can be very helpful in controlling local col-
palliative management. Table 16B-1 presents highlights for the onization and odor. As long as they do not cause burning, they
assessment of tumor necrosis and associated symptoms. may be sprayed directly on the wound and can be quite effective
Haiseld-Wolfe and Baxendale-Cox9 proposed a staging at controlling odor. If pain and burning occur with use of skin
classication system for assessment of malignant cutaneous cleansers in the wound, they should be used only on the sur-
wounds. Use of wound classication may increase the effec- rounding skin. Topical antimicrobial agents such as hydrogen
tiveness of communication among health care practitioners peroxide, Dakins solution, and povidone iodine are recom-
and make evaluation of treatment effectiveness consistent. In a mended by some authors10; however, their use should be weighed
pilot study with 13 wounds, they proposed a staging classica- against the potential negative effects of local pain, wound desic-
tion system that evaluates wound depth with clinical descrip- cation with subsequent pain and bleeding on dressing removal,
tors, predominant color of the wound, hydration status of the and unpleasant odor associated with some agents (Dakins and
wound, drainage, pain, odor, and presence of tunneling or povidone iodine), which may be bothersome to patients. In the
undermining. Use of this system provides a basis for a stan- authors experience, the skin cleansers described provide cleans-
dard set of descriptors that nurses can use to both understand ing and odor reduction without many of the negative effects of
and assess tumor necrosis wounds. the topical antimicrobial agents.
Skin Disorders: Tumor Necrosis, Fistulas, and Stomas 331
Table 16B1
Assessment of Cutaneous Malignancy
Assessment Rationale
Wound Location
Is mobility impaired? Consider occupational therapy referral to facilitate activities of
daily living
Located near wrinkled or at skin? Affects dressing selection
Affects dressing xation
Wound Appearance
Size: length, width, depth, undermining, deep structure exposure Affects dressing selection, provides information on
deterioration or response to palliative treatment
Fungating or ulcerative Affects dressing selection and xation
Percentage of viable vs. necrotic tissue Need for cleansing/debridement
Tissue friability and bleeding Need for nonadherent dressings and other measures to
control bleeding
Presence of odor Need for odor-reducing strategies
Presence of stula Possible need for pouching
Exudate amount Affects dressing selection
Wound colonized or clinically infected Need for local versus systemic care
Surrounding Skin
Erythematous Infection or tumor extension
Fragile or denuded Impacts dressing type and xation
Nodular Tumor extension/metastasis
Macerated Need for improved exudate management
Radiation-related skin damage Need for topical care of skin, affects dressing xation
Symptoms
Deep pain: aching, stabbing, continuous Need to adjust systemic analgesia
Supercial pain: burning, stinging, may be Need for topical analgesia and rapid-onset, short-acting
associated only with dressing changes analgesics
Pruritus Related to dressings? If not, may need systemic antipruritic
medications
Potential for Serious Complications

Lesion is near major blood vessels: potential for hemorrhage Need for education of patient/family about palliative
management of severe bleeding
Lesion is near major blood vessels: potential for Need for education of patient/family about palliative
vessel compression/obstruction management of severe swelling and pain, possible tissue
necrosis
Lesion is near airway: potential for obstruction Need for education of patient/family about palliative
management of airway obstruction
Necrotic tissue in tumor necrosis is typically moist yellow increased under occlusion and/or with the use of hydrogels.
slough. Occasionally, in the absence of exudate, there may be Local debridement may be performed by very gently scrubbing
dry black eschar, but this is uncommon. Debridement is best the necrotic areas with gauze saturated with skin or wound
done with the use of autolytic and/or gentle mechanical cleanser. Low-pressure irrigation with normal saline using a
methods, as opposed to wet-to-dry dressings, which are trau- 35-mL syringe and a 19-gauge needle can be used to remove
matic and can cause signicant bleeding on removal. Autolytic loose necrotic tissue and decrease bacterial counts. Care
debridement can be achieved with the use of dressings that should be taken to avoid causing pain with either procedure.
support a moist wound environment,11 but odor may be In addition, careful sharp debridement by clinicians trained in
this procedure can be done to remove loose necrotic tissue. Disadvantages include cost (comparable to metronidazole
Care should be taken to avoid penetrating viable tissue, because 0.75% gel) and possible burning on application.
bleeding may be difcult to control. If necrotic tissue on the Less conventional methods of odor management are also
tumor is extensive, surgical debridement may be indicated to available. Topical use of yogurt or buttermilk has been reported
allow for infection prevention, odor control, and exudate to be successful at eliminating some tumor necrosis odors.19,20
management, if compatible with the palliative goals of care for The yogurt or buttermilk is applied topically to the wound
the patient. after cleansing. These substances may work by decreasing the
Local colonization and odor can be reduced with the use of wound pH, thus stunting bacterial proliferation and the
topical antibacterial preparations. Odor control is by far the resultant odor. It is theorized that the low pH of the lacto-
most difcult management aspect of tumor necrosis. The litera- bacilli present in the yogurt or buttermilk is responsible for
ture supports use of topical metronidazole, which has a wide the alteration in wound pH. There are limited studies support-
range of activity against anaerobic bacteria, to control wound ing the use of yogurt or buttermilk, and none has addressed
odor.1217 Topical therapy is available by crushing metronidazole specic limitations or contraindications for use. Use of pep-
tablets in sterile water and creating either a 0.5% solution permint oil or other aromatherapy products, as well as cat lit-
(5 mg/mL) or a 1% solution (10 mg/mL).12,15,18 This may be used ter, in the environment around the patient may also help to
as a wound irrigant, or gauze may be saturated with the solution eliminate wound odor.
and packed into wound cavities. Care must be taken not to allow Use of charcoal dressings, which absorb and trap odor, may
the gauze packing to desiccate, because dressing adherence may also be helpful in odor management. Charcoal dressings may
lead to bleeding and pain. Gomolin and Brandt12 reported the be used as either primary or secondary dressings. Because
use of a 1% metronidazole solution in the treatment of four geri- these dressings vary in their application and performance, pack-
atric patients with malodorous pressure ulcers. Odor was com- age inserts should be reviewed before use. A basket of charcoal
pletely eradicated in three of the patients within 3 to 7 days, and under the bed or table may also help to rid the environment of
it was dramatically decreased in the fourth patient within 2 days. wound odor in the home setting.21
An easy, effective alternative to metronidazole solution is Although local colonization is treated with topical cleans-
MetroGel Topical Gel (metronidazole 0.75%; Galderma Labora- ing, debridement, and antibacterial agents, clinical infection (as
tories), which is applied to the wound in a layer one-eighth inch evidenced by erythema, induration, increased pain and exu-
thick. Poteete16 evaluated the use of metronidazole 0.75% gel in date, leukocytosis, and fever) should be treated with systemic
the treatment of 13 patients with malodorous wounds. Metron- antibiotics. Cultures should be used to identify infecting organ-
idazole gel was applied to the wounds daily and covered with isms once the wound is diagnosed with an infection based on
either saline-moistened or hydrogel-saturated gauze. At the end clinical signs; cultures should not be used routinely to diagnose
of the 9-day observation period, no odor was detected in any infection. Because of the local inammatory effects of the
wound after the dressings were removed. Finlay and associates17 tumor, wounds may have many of the same signs as infection,
prospectively studied subjective odor and pain, appearance, and so the clinician must be discriminating in differentiating
bacteriological response in 47 patients with malodorous between the two. A complete blood count, assessing the white
wounds treated with daily application of metronidazole 0.75% cell count and differential, may be helpful in guiding assess-
gel. Patients were assessed at study entry, at 7 days, and at 14 ment and therapy. It is crucial to avoid treating patients with
days. Ninety-ve percent of the patients reported decreased oral antibiotics if they are only colonized and not infected, to
odor at 14 days. Anaerobic colonization was discovered in 53% prevent side effects and emergence of resistant organisms.
of patients and eliminated in 84% of these cases after treatment.
Patients reported decreased pain at day 7, and both discharge Management of Exudate. Because of the inammation and
and cellulitis were signicantly decreased by the end of the edema commonly associated with these wounds, there tends
study. Because the cost of this product is signicantly higher to be signicant exudate. Dressings should be chosen to con-
than that of metronidazole 1% solution, practitioners may want ceal and collect exudate and odor. It is essential to use dressings
to use the gel product initially, to eradicate odor, and then that contain the exudate, because a patient who experiences
switch to the irrigation solution for maintenance. Systemic unexpected drainage on clothing or bedding may suffer signif-
metronidazole should not be used for local bacterial coloniza- icant feelings of distress and loss of control. Specialty dress-
tion, but should only be used if the wound is clinically infected. ings, such as foams, alginates, or starch copolymers, are notably
Another topical antimicrobial agent is Iodosorb gel, an more expensive than gauze pads or cotton-based absorbent
iodine complexed in a starch copolymer (cadexomer iodine). pads. However, if such dressings reduce the overall cost by
This product contains slow-release iodine and has been shown reducing the need for frequent dressing changes, they may be
to decrease bacterial counts in wounds without cytotoxicity. cost-effective. Table 16B2 summarizes tumor necrosis dress-
Seaman11 reported her clinical experience with this product ing considerations. Nonadherent dressings are best for the pri-
for reduction of odor associated with venous ulcers. Cadex- mary contact layer, because they minimize the trauma to the
omer iodine is available in a 40-g tube and is applied to the wound associated with dressing changes.
wound in a one-eighth inch layer. An advantage of this prod- Seaman11 suggested using nonadherent contact layers, such
uct is exudate absorption: each gram absorbs 6 mL of uid. as Vaseline gauze, for the primary dressing on the wound bed,
Table 16B2
Dressing Choices for Tumor Necrosis or Malignant Cutaneous Lesions
Type of Wound and Goals of Care Dressing Choice
Low Exudate
Maintain moist environment Nonadherent contact layers
Prevent dressing adherence and bleeding Adaptic (Johnson & Johnson)
Dermanet (DeRoyal)
Mepitel (MInlycke)
Petrolatum gauze (numerous
manufacturers)
Tegapore (3M Health Care)
Amorphous hydrogels
Sheet hydrogels
Hydrocolloids: contraindicated with fragile
surrounding skin, may increase odor
Semipermeable lms: contraindicated with
fragile surrounding skin
High Exudate
Absorb and contain exudate Alginates
Prevent dressing adherence in areas of Foams
lesion with decreased exudate Starch copolymers
Gauze
Soft cotton pads
Menstrual pads (excessive exudate)
Malodorous Wounds
Wound cleansing (see text) Charcoal dressings
Reduce or eliminate odor Topical metronidazole (see text)
Iodosorb Gel (Healthpoint): iodine-based, may
cause burning
and covering these with soft, absorbent dressings, such as gauze barrier ointment or skin sealant on the skin surrounding the
and ABD pads, for secondary dressings to contain drainage. ulcer. These barriers protect the fragile tissue from maceration
The entire dressing is changed once a day; the secondary dress- and the irritating effects of the drainage on the skin. Dressings
ing should be changed twice a day if drainage strikes through can then be held in place with Montgomery straps or tape afxed
to the outside of the bandage. Menstrual pads may be advan- to a skin barrier placed on healthy skin, exible netting, tube
tageous, not only because of their excellent absorption but also dressings, sports bras, panties, and the like.
because the plastic backing blocks exudate and protects cloth-
ing. Protection of the surrounding skin is another goal of exu- Controlling Bleeding. The viable tissue in a malignant lesion
date management. may be very friable, bleeding with even minimal manipula-
The skin around the tumor necrosis may be fragile secondary tion. Prevention is the best therapy for controlling bleeding.
to previous radiation therapy, inammation due to tumor exten- Prevention involves use of a gentle hand in dressing removal
sion, repeated use of adhesive dressings, or maceration. Although and thoughtful attention to the use of nonadherent dressings
adhesive dressings may assist with drainage and odor control, or moist wound dressings. On wounds with a low amount of
their potential to strip the epidermis on removal may outweigh exudate, the use of hydrogel sheets, or amorphous hydrogels
their benet. Using ostomy skin barriers on the skin surrounding under a nonadherent contact layer, may keep the wound moist
the wound and then taping the dressings to the skin barriers and prevent dressing adherence. Even highly exudating wounds
(changing them every 5 to 7 days) is one method of protecting may require a nonadherent contact layer to allow for atrau-
surrounding skin from excess drainage and also from the skin matic dressing removal. If dressings adhere to the wound on
stripping that results with dressing changes when tape is used. attempted removal, they should be soaked away with normal
Another method of protecting the surrounding skin is to use a saline to lessen the trauma to the wound bed. If bleeding does
occur, the rst intervention should be direct pressure applied performed frequently in these patients, topical opioids may be
for 10 to 15 minutes. Local ice packs may also assist in controlling an excellent adjunct to the pain management plan.
bleeding. If pressure alone is ineffective, several other options
exist. Haiseld-Wolfe and Rund22 suggested the use of calcium Patient and Caregiver Education
alginate or collagen dressings, because both have hemostatic
properties. Waller and Caroline23 advised use of gauze soaked in The same education provided to patients and caregivers about
1:1000 epinephrine over the bleeding point or application of basic wound care should be provided to those dealing with
sucralfate paste (a 1-g sucralfate tablet crushed in 2 to 3 mL of tumor necrosis. Frequency and procedures for dressing changes,
water-soluble gel) over widespread oozing. As an alternative, including time of premedication for pain management and
use of a topical absorbable hemostatic sponge or foam (e.g., alternatives for odor control, should be presented and rein-
Gelfoam) may be appropriate. Small bleeding points can be forced. Patient and caregiver education must also focus on the
controlled with silver nitrate sticks. More aggressive therapy psychosocial aspects of tumor necrosis. Patients are often
may be necessary in cases of signicant bleeding, including unable to separate themselves from the wound and may feel as if
transcatheter embolization of the arteries feeding the tumor,24 their bodies are rotting away. Indeed, patients are often unable
intraarterial infusion chemotherapy and radiotherapy,25 or sur- to view the wound, may become nauseous or retch when dress-
gery if compatible with palliative care goals of the patient. Clin- ing changes are performed, or may exhibit other signs of low
icians should not hesitate to consider these options if they will self-esteem related to the wound. The nurse can facilitate a
improve the quality of life in patients with tumor necrosis. trusting relationship with the patient by reviewing the goals of
care and by openly discussing issues that the patient may not
Pain Management. Several types of pain are associated with have talked about with other providers. For example, it is help-
tumor necrosis: deep pain, neuropathic pain, and supercial ful to acknowledge odor openly and then discuss how it will be
pain related to procedures.7 Deep pain should be managed by managed. Attention to the cosmetic appearance of the wound
premedication before dressing changes. Opioids for preproce- with the dressing in place can assist the patient in dealing with
dural medication may be needed, and rapid-onset, short-acting body image disturbances. Use of exible dressings (e.g., foam
analgesics may be especially useful for those already receiving dressings) and dressings that can ll a defect (e.g., calcium algi-
other long-acting opioid medication. For management of nates, soft nonwoven gauze) may be appropriate to restore sym-
supercial pain related to procedures, topical lidocaine or ben- metry and provide adequate cosmesis for the patient.
zocaine may be helpful.26 These local analgesics may be Isolation may result from embarrassment, shame, or guilt.
applied to the wound immediately after dressing removal, Caregivers may be overcome by the appearance of the wound or
with wound care delayed until adequate local anesthesia is the other associated characteristics, such as odor. Assisting the
obtained. Ice packs used before or after wound care may also patient and the caregiver to deal with the distressing symptoms
be helpful to reduce pain. of the tumor necrosis so that odor is managed, pain is alleviated,
Another option for topical analgesia is the use of topical and exudate contained improves the quality of life for these
opioids, which bind to peripheral opioid receptors.2729 Back patients and contributes to the goal of satisfactory psychological
and Finlay28 reported on the use of diamorphine 10 mg added well-being. Education must include realistic goals for the
to an amorphous hydrogel and applied to the wounds of three wound. In cases of tumor necrosis, the goal of complete wound
patients on a daily basis. Two of the patients had painful pres- healing is seldom achievable, but through attention to exudate,
sure ulcers, and the third had a painful malignant ulceration. odor, and pain, quality of life can be maintained even as the
All three were receiving systemic opioid therapy. The patients tumor necrosis wound degenerates. Determination of priority
noted improved pain control on the rst day of treatment. goals in palliation may be the rst step in patient and caregiver
Krajnik and Zbigniew29 reported the case of a 76-year-old education. For example, if the patient is most disturbed by odor,
woman with metastatic lesions on her scalp that caused her measures to address wound odor should be foremost in the
severe tension pain. Ibuprofen (400 mg three times daily) was treatment plan. Continual education and evaluation of the
ineffective. Because the pain was in a limited area, the authors effectiveness of the treatment plan are essential to maintaining
applied morphine gel 0.08% (3.2 mg morphine in 4 g of amor- quality of life for those with tumor necrosis.
phous hydrogel). The patients pain decreased from 7 to 1 on a
10-point visual analog scale within 2 hours after gel applica-
tion. Pain increased back to 6 at 25.5 hours after application. o]o]o]
Therefore, the gel was reapplied daily and maintained pain FISTULAS
control with no side effects. Similar results have been obtained
by other authors in the care of patients with painful ulcers.30,31 Denition
Additionally, Ballas32 noted success in treating two patients
with painful sickle cell ulcers using topical crushed oxycodone A stula is an abnormal passage or opening between two or
for one patient and topical crushed meperidine for the other more body organs or spaces. The most frequently involved
one. Nurses should discuss this option for topical pain relief organs are the skin and either the bladder or the digestive tract,
with individual patients and physicians. Because wound care is although stulas can occur between many other body organs
and/or spaces. Often, the organs involved and the location of clinically, and the goal for care becomes living with the stulas
the stula inuence management methods and complicate and palliation of symptoms.
care. For example, stulas involving the small bowel and the Other factors contributing to stula development include
vaginal vault and those involving the esophagus and skin cre- the presence of a foreign body next to a suture line, tension on
ate extreme challenges in care related to both the location and a suture line, improper suturing technique, distal obstruction,
the organs involved in the stula. Although spontaneous clo- hematoma/abscess formation, tumor or additional disease in
sure occurs in at least 50% of all enteric or small-bowel anastomotic sites, and inadequate blood supply. Each of these
stulas, the time required to achieve closure is 4 to 7 weeks, so can contribute to stula formation by promoting an abnormal
long-term treatment plans are required for all patients with passage between two body organs. Typically, the contributing
stulas. Ninety percent of those stulas that close sponta- factor provides a tract for easier evacuation of stool or urine
neously do so within the 4- to 7-week time frame.33 Therefore, along the tract rather than through the normal route. Such is
if the stula has not spontaneously closed with adequate med- the case with a foreign body next to the suture line and with
ical treatment within 7 weeks, the goal of care may change to hematoma or abscess formation. In some cases, the normal
palliation, particularly if chances of closure are limited by passageway is blocked, as with tumor growth or obstructive
other factors. Factors that inhibit stula closure include com- processes. Finally, in many cases, the pathology relates to inad-
plete disruption of bowel continuity, distal obstruction, pres- equate tissue perfusion, as with tension on the suture line,
ence of a foreign body in the stula tract, an epithelium-lined improper suturing, and inadequate blood supply.
tract contiguous with the skin, presence of cancer, previous
radiation, and Crohns disease. The presence of any of these Fistula Assessment
factors can be deleterious for spontaneous closure of a stula.
The goals of management for stula care involve containment Assessment of the stula involves assessment of the source, sur-
of efuent, management of odor, comfort, and protection of rounding skin, output, and uid and electrolyte status. Evalua-
the surrounding skin and tissues. tion of the stula source may involve diagnostic tests such as
radiographs to determine the exact structures involved in the s-
Pathophysiology of Fistula Development tula tract. Assessment of the stula source involves evaluation of
stula output, or efuent, for odor, color, consistency, pH, and
In cancer care, those with gastrointestinal cancers and those amount. These characteristics provide clues to the origin of the
who have received irradiation to pelvic organs are at highest output. Fistulas with highly odorous output are likely to origi-
risk for stula development. Fistula development occurs in 1% nate in the colon or may be related to cancerous lesions. Fistula
of patients with advanced malignancy.33 In most cases of output with less odor may have a small-bowel origin. The color
advanced malignancy, the stula develops in relation to either of stula output also provides clues to the source: clear or white
obstruction from the malignancy or irradiation side effects. output is typical of esophageal stulas, green output is usual of
Radiation therapy damages the vasculature and underlying stulas originating from the gastric area, and light brown or tan
structures. In cancer-related stula development, manage- output may indicate small-bowel sources. Small-bowel output is
ment is almost always palliative. However, stula development typically thin and watery to thick and pasty in consistency,
is not limited to patients with cancer. whereas colonic stulas have output with a pasty to a soft consis-
In addition to cancer and radiation therapy, postsurgical tency. The volume of output is often an indication of the source.
adhesions, inammatory bowel disease (Crohns disease), and For small-bowel stulas, output is typically high, with volumes
small-bowel obstruction place an individual at high risk for s- ranging from 500 to 3000 mL over 24 hours, for low-output and
tula development. The number one cause of stula development high-output stulas, respectively. Esophageal stula output may
is postsurgical adhesions. Adhesions are scar tissues that cause be as high as 1000 mL over 24 hours. Fistulas can be classied
stula development by providing an obstructive process within according to output, with those producing less than 500 mL over
the normal passageway. Those with inammatory bowel disease, 24 hours classied as low output and those producing greater
Crohns disease in particular, are prone to stula development by volumes classied as high output.32
virtue of the effects of the disease process on the bowel itself. The anatomical orice location, proximity of the orice to
Crohns disease often involves the perianal area, with ssures and bony prominences, the regularity and stability of the surround-
stulas being common ndings. Because Crohns disease is a ing skin, the number of stula openings, and the level at which
transmural disease, involving all layers of the bowel wall, patients the stula orice exits onto the skin inuence treatment options.
are prone to stula development. Crohns disease can occur any- Fistulas may be classied according to the organs involved and
where along the entire gastrointestinal tract, and there is no the location of the opening of the stula orice. Fistulas with
known cure. Initially, the disease is managed medically with ste- openings from one internal body organ to another (e.g., from
roids, immunotherapy, and metronidazole for perianal disease. If small bowel to bladder, from bladder to vagina) are internal
medical management fails, the patient may be treated with surgi- stulas; those with cutaneous involvement (e.g., small bowel
cal creation of a colostomy, to remove the portion of bowel to skin) are external stulas.33
affected by the disease. In later stages of disease, if medical and The location of the stula often impedes containment
surgical management have failed, multiple stulas may present of output. Skin integrity should be assessed for erythema,
ulceration, maceration, or denudation from stula output. date drains from the anterior portion of the wound (under
Typically, the more caustic the stula output, the more the thin film dressing) to the posterior portion of the wound
impaired the surrounding skin integrity. Multiple stula tracts and out into the ostomy pouch, along with fistula output.
may also impede containment efforts. The trough technique does not prevent fistula output from
Assessment of uid and electrolyte balance is essential contaminating the wound site.
because of the risk of imbalance in both. In particular, the The bridging technique prevents stula output from con-
patient with a small-bowel stula is at high risk for uid vol- taminating the wound site and allows for a unique wound
ume decit or dehydration and metabolic acidosis due to the dressing to be applied to the wound site. Bridging is appropri-
loss of large volumes of alkaline small-bowel contents. Signi- ate for stulas that occur in the posterior aspect of large
ficant losses of sodium and potassium are common with abdominal wounds, where it is important to contain stula
small-bowel stulas. Laboratory values should be monitored output away from the wound site. Using small pieces of skin
frequently. Evaluation for signs of uid volume decit is also barrier wafers, the clinician builds a bridge by consecutively
recommended. layering the skin barriers together until the skin barrier has
the appearance of a wedge or bridge and is the same height
Fistula Management as the depth of the wound.33 With the use of a skin barrier
paste, the skin barrier wedge is adhered to the wound bed (it
Wherever anatomically possible, the stula should be man- does not harm the healthy tissues of the wound bed), next to
aged with an ostomy pouching technique. The surrounding the stula opening. An ostomy pouch is then cut to t the s-
skin should be cleansed with warm water without soap or tula opening, using the wedge or bridge as a portion of intact
antiseptics; skin barrier paste should then be used to ll uneven surrounding skin to adhere the pouch.33 The anterior aspect of
skin surfaces, so that a at surface is created to apply the the wound may then be dressed with the dressing of choice.
pouch. Pediatric pouches are often smaller and more exible Saddlebagging is used for multiple stulas, if it is important
and may be useful for hard-to-pouch areas where exibility is to keep the output from each stula separated and the stula
needed, such as the neck for esophageal stulas. The type of orices are close together. Two cut-to-t ostomy pouches (or
pouch should be chosen based on the output of the stula. For more for more stulas) are used. The stula openings are cut on
example, if the stula output is watery and thin, a pouch with the back of the pouch, off-center or as far to the side as possible,
a narrow spigot or tube for closure is chosen; in contrast, a s- and the second pouch is cut to t the next stula, off-center as
tula with a thick, pasty output would be better managed with far to the other side as possible. The skin is cleansed with warm
a pouch with an open end and a closure clamp. Pouches must water, and skin barrier paste is applied around the orices.
be emptied frequently, at least when one-third to one-half full. Ostomy pouches are applied, and, where they contact each other
There are several wound drainage pouching systems on the (down the middle), they are afxed or adhered to each other in
market that allow for visualization and direct access to the s- a saddlebag fashion. Multiple stulas can also be managed
tula through a valve or door that can be opened and closed. with one ostomy pouching system that accommodates the mul-
These wound management pouches are available in large sizes tiple openings. Consultation with an enterostomal therapy (ET)
and often work well for abdominal stulas. Pouching of the nurse or ostomy nurse is extremely advantageous in these cases.
stula allows for odor control (many stulas are quite mal- Another method of managing stulas is by a closed suction
odorous), containment of output, and protection of the sur- wound drainage system. Jeter and colleagues35 described the use
rounding skin from damage. Gauze dressings with or without of a Jackson-Pratt drain and continuous low suction in stula
charcoal lters may be used if the output from the stula is less management. After the wound is cleansed with normal saline,
than 250 mL over 24 hours and is not severely offensive in the fenestrated Jackson-Pratt drain is placed in the wound, on
odor. Colostomy caps (small closed-end pouches) can be use- top of a moistened gauze that has been opened up to line the
ful for low-output stulas that continue to be odorous. wound bed (primary contact layer); a second uffed wet gauze
There are specific pouching techniques that are useful in is placed over the drain, and the surrounding skin is prepared
complex fistula management, including troughing, saddle- with a skin sealant. Next, the entire site is covered with a thin
bagging, and bridging. These techniques are particularly lm dressing, which is crimped around the tube of the drain
helpful when dealing with fistulas that occur in wounds, where it exits the wound. The tube exit site is lled with skin
most commonly the small-bowel fistula that develops in the barrier paste, and the drain is connected to low continuous wall
open abdominal wound. Troughing is useful for fistulas that suction; the connection site may need to be adjusted and may
occur in the posterior aspect of large abdominal wounds.34 require use of a small Christmas tree connector or device and
The skin surrounding the wound and fistula should be lined tape to secure it. Jeter and colleagues35 advised changing the
with a skin barrier wafer and the edge nearest the wound system every 3 to 5 days. Others have used a similar setup for
sealed with skin barrier paste. Then, thin film dressings are pharyngocutaneous stulas.36 A wound closure device that
applied over the top or anterior aspect of the wound, down provides intermittent or continuous subatmospheric pressure
to the fistula orifice and the posterior aspect of the wound. offers additional options for stula management.
Finally, a cut-to-fit ostomy pouch is used to pouch the open- Pouches to contain the stula output usually involve odor
ing in the thin film dressing at the fistula orifice. Wound exu- as well. If odor continues to be problematic with an intact
pouching system, internal body deodorants such as bismuth The urinary or fecal stoma can be managed (by the ET nurse) to
subgallate, charcoal compositions, or peppermint oil may be incorporate the needs and goals of both the patient and the
helpful.37 Taking care to change the pouch in a well-ventilated caregiver and to provide the highest quality of life possible.
room also helps with odor. If odor is caused by anaerobic bac-
teria, use of 400 mg metronidazole orally three times a day Pathophysiology
may be helpful. Management of high-output stulas may be
improved with administration of octreotide 300 mcg subcuta- A stoma is an articial opening in the abdominal wall that is
neously over 24 hours.33 surgically created to allow urine or stool to be eliminated by an
Nutrition management and uid and electrolyte mainte- alternative route. The most common indications for the cre-
nance are essential for adequate stula care. Fluid and nutri- ation of a stoma are as follows:
tional requirements may be greatly increased with stulas, and
1. Cancers that interfere with the normal function of
there are difculties with stulas that involve the gastrointesti-
the urinary or gastrointestinal system
nal system. As a general guideline, the intestinal system should
2. Inammatory bowel diseases such as Crohns or
be used whenever possible for nutritional support. If nutrition
ulcerative colitis
can bypass the stula site, absorption and tolerance are better
3. Congenital diseases such as Hirschsprungs disease
with use of the intestinal tract. For small-bowel stulas, bypass
or familial adenomatous polyposis
of the stula orice is not always feasible. If the small-bowel
4. Trauma
stula is located distally, enough of the intestinal tract may be
available to adequately absorb nutrients before the stula orice In planning the care of an individual with a stoma, it is nec-
is reached. If the stula is located more proximally, there may essary to understand the type of ostomy that was created,
not be enough intestinal tract available for nutrient absorp- including the contents that will be eliminated.
tion ahead of the stula orice. Many of these patients must be
given intravenous hyperalimentation during the early stages of Types of Diversion
stula management. The specic goals of uid and electrolyte
and nutritional support for stula management must be dis- The three types of diversion created with a stoma as the outlet
cussed with the patient and family in view of the palliative for urine or stool are the ileoconduit (urinary output), the
nature of the overall care plan. ileostomy (fecal output), and the colostomy (fecal output).
Construction of any of these diversions requires the person to
Patient and Caregiver Education wear an external appliance to collect the output.
Patient and caregiver teaching rst involves adequate assess- Ileoconduit. Since the early 1950s, the Bricker ileoconduit has
ment of the self-care ability of the patient and of the care- been the primary method for diverting urinary ow in the
givers abilities. The patient and caregiver must be taught the absence of bladder function. This procedure involves isolation
management method for the stula, including pouching tech- of a section of the terminal ileum. The proximal end is closed,
niques, how to empty the pouch, odor control methods, and and the distal end is brought out through an opening in the
strategies for increasing uid and nutritional intake. Many of abdominal wall at a site selected before surgery. The ileal seg-
the pouching techniques used to manage stulas are compliment is sutured to the skin, creating a stoma. The ureters are
cated and may require continual surveillance by an expert implanted into the ileal segment, urine ows into the conduit,
such as an ET nurse or ostomy nurse. and peristalsis propels the urine out through the stoma. An
external appliance is worn to collect the urine; it is emptied
when the pouch is one-third to one-half full, or approximately
o]o]o] every 4 hours.
PALLIATIVE STOMA CARE
Ileostomy. The ileostomy is created to divert stool away from
The signicance of palliative care for an individual with a the large intestine, typically using the terminal ileum. The
stoma is to improve well-being during this critical time and to stoma is created by bringing the distal end of the ileum through
attain the best quality of life possible. In regard to the stoma, an opening surgically created in the abdominal wall and sutur-
palliative care is achieved by restoring the most efcient man- ing it to the skin. The output is usually a soft, unformed to
agement plan and providing optimal functional capacity. It is semiformed stool. Approximately 600 to 800 mL/day is elimi-
essential to involve the family in the plan of care and to pro- nated. An external appliance is worn to collect the fecal mate-
vide care to the extent of the patients wishes. rial; it is emptied when the bag is one-third to one-half full,
Management of the ostomy includes physical care as well as usually four to six times per day.
psychological and social care. To meet the needs of the patient An ileostomy may be temporary or permanent. A tempo-
and family, access to the multidisciplinary care team is crucial. rary ileostomy usually is created when the colon needs time to
This team may include the ET nurse, physicians such as the sur- heal or rest, such as after colon surgery or a colon obstruction.
geon and oncologist, a nutritionist, and social service personnel. A permanent ileostomy is necessary if the entire colon, rectum,
and anus has been surgically removed, such as in colorectal stoma functioning, but a larger opening will need to be cut in
cancer or Crohns disease.38 the appliance to prevent pressure or constriction of the stoma.
Most stomas decrease by 4 to 6 weeks after surgery, with minor
Colostomy. The colostomy is created proximal to the affected changes over 1 year. Teaching the individual to continue to
segment of the colon or rectum. A colostomy may be tempo- measure the stoma with each change of appliance should alle-
rary or permanent. There are three sections of the colon: the viate the problem of wearing an appliance with an aperture too
ascending, transverse, and descending colon. The section of large for the stoma. The stoma needs only a space one-eighth of
colon used to create the stoma determines in part the location an inch in diameter to allow for expansion during peristalsis.
and the consistency of output, which may affect the nutri- Stoma herniation occurs when the bowel moves through
tional and hydration status of the individual at critical times. the muscle defect created at the time of stoma formation and
The ascending colon stoma usually is created on the right into the subcutaneous tissue. The hernia usually reduces spon-
midquadrant of the abdomen, and the output is a semiformed taneously when the patient lies in a supine position, as a result
stool. The transverse stoma is created in the upper quadrants of decreased intraabdominal pressure. Problems associated
and is the largest stoma created; the output is usually a semi- with the formation of a peristomal hernia are increased dif-
formed to formed stool. The descending colon stoma most culty with ostomy pouch adherence and possible bowel
closely mirrors the activity of normal bowel function; it usu- strangulation and obstruction. The peristomal hernia may be
ally is located in the lower left quadrant. managed conservatively with the use of a peristomal hernia
The stoma is created by bringing the distal end of the colon belt to maintain a reduction of the hernia. The belt is an
through an opening surgically created in the abdominal wall abdominal binder with an opening to allow for the stoma and
and suturing it to the skin. An external appliance is worn to pouch. The belt is applied with the patient in a supine position,
collect the fecal material; it is emptied when the bag is one- while the hernia is reduced, creating an external pressure that
third to one-half full, usually one or two times per day. A sec- maintains the bowel in a reduced position. Aggressive treat-
ond option for management is irrigation, to regulate the ment includes surgical intervention for correction of the peri-
bowel. The patient is taught to instill 600 to 1000 mL of luke- stomal hernia. However, this is usually reserved for emergency
warm tap water through the stoma, using a cone-shaped irri- situations, such as obstruction or strangulation of the bowel.
gation apparatus. This creates bowel distention, stimulating Colostomy patients who irrigate should be taught to irrigate
peristaltic activity and therefore elimination within 30 to with the hernia in a reduced position, to prevent perforation
45 minutes. Repetition of this process over time induces bowel of the bowel.
dependence on the stimulus, reducing the spillage of stool Stoma prolapse occurs as a result of a weakened abdominal
between irrigations. The elimination process after initial evac- wall caused by abdominal distention, formation of a loop
uation is suppressed for 24 to 48 hours.39,40 stoma, or a large aperture in the abdominal wall. The prolapse
is a telescoping of the intestine through the stoma. Stoma pro-
Assessment lapse may be managed by conservative or surgical interven-
tion. Surgical intervention is required if there is bowel ischemia,
Stoma Characteristics. Viability of the stoma is assessed by its bowel obstruction, or prolapse of excessive length and unre-
color. This should be checked regularly, especially in the early ducible segment of bowel. Conservative management includes
postoperative period. Normal color of the stoma is deep pink reducing the stoma while in a supine position to decrease the
to deep red. The intestinal stomal tissue can be compared with intraabdominal pressure, then applying continuous gentle
the mucosal lining of the mouth. The stoma may bleed when pressure at the distal portion of the prolapse until the stoma
rubbed because of the capillaries at the surface. Bleeding that returns to skin level. If the stoma is edematous, cold soaks or a
occurs spontaneously or excessively from stoma trauma can hypertonic solution such as salt or sugar is applied to reduce
usually be managed by the application of pressure. Bleeding the edema before stoma reduction is attempted. Once the stoma
that persists or that originates from the bowel requires prompt is reduced, a support binder is applied to prevent recurrence.
investigation, with the management plan based on the cause of In most cases, it is necessary to alter the pouching system by
the bleeding and the overall status of the individual.39,40 including a two-piece appliance and cutting the barrier size
A stoma with a dusky appearance ranging from purple to opening larger to accommodate changes in stoma size.
black, or a necrotic appearance, indicates impairment of cir- Retraction of the stoma below skin level can occur in the
culation and should be reported to the surgeon. A necrotic early postoperative period due to tension on the bowel or
stoma may develop from abdominal distention that causes ten- mesentery or related to breakdown at the mucocutaneous
sion on the mesentery, from twisting of the intestine at the time junction. Late retraction usually occurs as a result of tension on
of surgery, or from arterial or venous insufciency. Necrotic the bowel from abdominal distention, most likely as a result of
tissue below the level of the fascia indicates infarction and intraperitoneal tumor growth or ascites. Stomal retraction is
potential intraabdominal urine or stool leakage. Prompt recog- managed by modication of the pouching systemfor exam-
nition and surgical reexploration are necessary. ple, by using a convex appliance to accommodate changes in
Stoma edema is normal in the early postoperative period as skin contour. Stomas that retract below the fascia level require
a result of surgical manipulation. This should not interfere with prompt surgical intervention.
Stenosis of the stoma can occur at the skin level or at the wafer and pouch without the use of skin preparations. Chang-
level of the fascia. Stenosis that interferes with normal bowel ing to products from a different manufacturer may also elimi-
elimination requires intervention. Signs and symptoms of nate the allergen. A nonadhesive pouching system may be used
stenosis include change in bowel habits (e.g., decreased out- temporarily for patients with severe blistering and hypersensi-
put, thin-caliber stools), abdominal cramping, abdominal tivity, to allow healing and prevent further peristomal skin
distention, ank pain from urinary stomas, and nausea or damage. Patients with severe blistering and pruritus may also
vomiting. The stenotic area may be managed conservatively by require temporary use of systemic or topical antihistamines or
dilatation or may require surgical intervention by local exci- corticosteriods.39,40
sion or laporatomy.39,40 Many of the stoma problems discussed
can occur from simple stretching and displacement of normal Principles and Products for Pouching a Stoma. The continuous
organs due to bulky tumors, as might occur in the end stages outow of urine or stool from the stoma requires the individ-
of some disease states. ual to wear an external appliance at all times. Ideally, the stoma
protrudes one-half to three-fourths of an inch above the skin
Peristomal Skin Problems. Peristomal skin complications surface, to allow the urine or stool to drain efciently into a
commonly include mechanical breakdown, chemical break- pouch.40 The objective of stoma management is to protect the
down, rash, and allergic reaction. Mechanical breakdown is peristomal skin, contain output, and control odor.
caused by trauma to the epidermal skin layer. This is most The skin around the stoma should be cleaned and thor-
often related to frequent appliance changes that cause shearing oughly dried before the appliance is positioned over the stoma.
or tearing to the epidermal skin. The result is denuded skin or An effective pouch should adhere for at least 3 days, although
erythematous, raw, moist, and painful skin. The use of pectin- this is not always possible. If no leakage occurs, the same pouch
based powder with or without a light coating of skin sealant may remain adhered to the skin for up to 10 days. It should then
aids in healing and protecting the skin from further damage be changed for hygienic reasons and to observe the peristomal
while allowing appliance adherence. area. Today, there is an ever-changing supply of new appli-
Chemical breakdown is caused by prolonged contact of ances. Materials and design are being updated rapidly to pro-
urine or fecal efuent with the peristomal skin. Inappropriate vide the consumer with the best protection and easiest care.41
use of adhesive skin solvents may also result in skin break- Factors to consider when choosing a pouch include the consis-
down. The result of chemical breakdown is denudation of the tency and type of efuent, the contour of the abdomen, the
peristomal skin that has been exposed to the caustic effects of size and shape of the stoma, and the extent of protrusion, as a
the stool, urine, or adhesive solvents. Prompt recognition and well as patient preferences.
management are essential. Modication of the pouching Pouching systems are available as one-piece or two-piece
system, such as using a convex wafer instead of a at wafer systems. The one-piece system is constructed with the odor-
or adding protective skin products such as a paste (or both) proof pouch joined to a barrier ring that adheres to the skin.
can be used to correct the underlying problem. Instructing The barrier can be precut to the size of the stoma, or it can be
patients and caregivers to thoroughly cleanse the skin with customized with a cut-to-t barrier. A two-piece system usu-
plain water after using the skin solvent can eliminate the prob- ally consists of an individual barrier with a ange ring and an
lem of denuded skin. Treatment of denuded skin is the same as odor-proof pouch, which attach (snap) together by matching
described previously. the ring size of the barrier and pouch. The pouch barrier may
A peristomal fungal rash can occur as a result of excessive be at or convex and is chosen based on the contour of the
moisture or antibiotic administration that results in over- abdomen and the extent of stoma protrusion. The colostomy
growth of yeast in the bowel or, at the skin level, due to perspi- pouch may be closed-ended or open-ended with a clip for clo-
ration under a pouch or leakage of urine or stool under the sure. Some individuals choose to clean the pouch daily. The
barrier. The rash is characterized as having a macular, red bor- pouch of the one-piece system can be cleaned by instilling
der with a moist, red to yellow center; it is usually pruritic. water into the pouch (with a syringe or turkey baster) and
Application of antifungal powder, such as nystatin powder, to rinsing while preventing the water from reaching the stoma
the affected areas usually produces a prompt response. Blot- area. The pouch of the two-piece system can be cleaned daily
ting the powder with skin preparation or sealant may allow the by detaching and washing it in the sink with soap and water
pouching system to adhere more effectively. and drying it before reattaching it to the barrier.
Allergic reactions are most often caused by the barrier and The urinary pouch has a spout opening to allow for con-
tape used for the pouching system. Erythematous vesicles and trolled emptying of the pouch. This end may also be attached to
pruritus characterize the area involved. Management includes a bedside bag or bottle to collect urine. It typically holds up to
removal of the offending agent. The distribution of the reac- 2000 mL of urine. The urinary system can be easily disassem-
tion can usually aid in dening the allergen. It may be neces- bled and cleaned with soap and water. After cleaning, a
sary to perform skin testing if the causative agent is not clear. vinegar-and-water solution should be rinsed through the tub-
Patients with sensitive skin and those who use multiple prod- ing and bag/bottle to prevent urine crystallization.
ucts may respond to simple pouching techniques such as using Skin barriers, skin sealants, powders such as Stomahesive
water to clean the skin, patting the skin dry, and applying the powder or karaya powder, and pastes such as Stomahesive paste
Analgesic use may result in constipation and ultimately

Table 16B3 bowel obstruction. It is necessary to coadminister stool soften-
Pouch Options
ers or laxatives for the prevention of constipation. Irrigation of
Type Barrier Odor-Proof Pouch the colostomy may also assist in treating constipation. The
patient and family need to be instructed regarding these mea-
1-piece Flat Open end with clip
sures so that they can be used to treat and prevent constipa-
(ileostomy with colostomy)
tion. The patient and family need to be aware that adequate
2-piece Convex Closed end (colostomy) pain relief and prevention of constipation can be achieved.38,39
Cut-to-t Spout opening (urostomy) Patients may become very tired or may experience anxiety,
Precut nausea, or pain as a result of their condition and palliative
management. Patients often want to remain as independent as
possible but may allow assistance from family and staff. For
example, the patient may want to perform the actual pouch
or karaya paste are available to protect the peristomal skin from change but allow someone else to gather and prepare the sup-
the caustic affects of urine or stool. These products may also be plies. This allows for conservation of energy during part of the
used to aid in the healing of peristomal skin problems. task to be accomplished. The patient may also choose the time
Belts and binders are available to assist in maintaining of day to perform such taskswhen he or she has the most
pouch adherence and for management of certain stoma prob- energy and maximal pain and nausea control.42
lems.40 Table 16B-3 presents an overview of pouching options
for patients with fecal or urinary diversions. Nutrition and Hydration. Anorexia and dehydration can be
major problems for the patient with advancing disease or
Interventions disease-related treatments such as chemotherapy and radia-
tion therapy. Compromised ingestion, digestion, and absorp-
Prevention of Complications. Stoma surgery performed as a tion can have major inuences on nutritional and hydration
palliative measure is not intended to provide a cure but status.
rather to alleviate difficulties such as obstruction, pain, or Anorexia is the loss of appetite resulting from changes in
severe incontinence. Unfortunately, at a difficult time in gastrointestinal function, including changes in taste, changes
patients and families lives, the created stoma disrupts nor- in metabolism, psychological behaviors, and the effects of dis-
mal physical appearance, normal elimination of urine or ease and treatment. Decreased oral intake and changes in
stool, and control of elimination with in some cases loss of metabolism, including decreased protein and fat metabolism,
body parts and/or sexual function. The patient then has to increased energy expenditure, and increased carbohydrate
learn to care for the stoma or allow someone else to care for consumption, result in loss of muscle mass, loss of fat stores,
them. Physically and psychologically, the patient has to come and fatigue, leading to weight loss and malnutrition.43
to terms with the presence of the stoma, its function, and Managing the underlying cause of poor nutritional and
care. This takes time and energy to cope emotionally, physi- hydration status, such as controlling the cancer or disease,
cally, and socially.38,39 treating an infection, or slowing down the high-volume
Educating the patient and family regarding management ileostomy output, can improve the nutritional state. However,
issues related to ostomy care and palliation could assist in the despite effective treatment, other assistance may be necessary,
physical and psychological adaptation to the ostomy. Addi- such as small and more frequent meals, nutritional liquid sup-
tional therapies that may be required for treatment of the plements, appetite stimulants (e.g., megestrol acetate), corti-
underlying disease or a new disease process, such as pro- costeroids, and parenteral or enteral support.44 Foods and
gressed or recurrent cancer, may affect the activity of the drinks need to be appealing to the patient. Strong odors and
stoma or the peristomal skin. Additional therapies may include large-portion meals may result in appetite suppression. Pro-
chemotherapy, radiation therapy, or analgesics for pain moting comfort before meals may also increase appetite; this
management. may include administering antiemetics or analgesics, oral care,
Chemotherapy and radiation therapy may affect a fecal or resting for 30 minutes before mealtime.43
stoma by causing diarrhea. Associated symptoms include
abdominal discomfort, larger quantities of loose or liquid stool Management Issues
produced per day, and potential dehydration and loss of
appetite with prolonged diarrhea. The ostomy bag requires Controlling odor, reducing gas, and preventing or managing
more frequent emptying, and the ostomy pouch seal needs to diarrhea or constipation are management issues related to
be monitored more closely for leakage. In addition, radiation patients with a colostomy. Odor can be controlled by ensuring
therapy that includes the stoma in the radiation eld can cause that the pouch seal is tight, that odor-proof pouches are used,
peristomal skin irritation, particularly redness and macera- and that a clean pouch opening is maintained. In addition,
tion. The effects on the peristomal skin may be exacerbated by deodorants such as bismuth subgallate or chlorophyllin copper
leakage of urine or stool, as described earlier.39 complex may be taken orally. Gas can be reduced by decreasing
intake of gas-producing foods such as broccoli, cabbage, liquid, noncoated, patch, rectal suppository, subcutaneous or
beans, and beer. Peppermint or chamomile tea may be effec- intravenous administration. Choosing the most appropriate
tive in gas reduction.38,39 route that provides the greatest efcacy for the individual is
Diarrhea can be managed as in a patient with an intact rec- essential. For example, a transdermal patch may be used for
tum and anus. Diarrhea may be a result of viral illness or use analgesia instead of a time-released pain tablet. For patients
of a chemotherapeutic agent. Management includes increased who have an intact rectum that is no longer in continuity with
uid intake, a low-ber and low-fat diet, and administration the proximal bowel, rectal administration of medications is
of antidiarrhea medications such as loperamide (Imodium), effective.45
bismuth subsalicylate (Pepto-Bismol), or diphenoxylate plus Management issues for an individual with an ileoconduit
atropine (Lomotil) by prescription.40,45 If the patient irrigates, include prevention of a urinary tract infection, stone forma-
it is necessary to hold irrigation until formed stools return. tion, peristomal skin protection, and odor control. Each of these
Constipation more commonly occurs in patients with advanced issues is preventable by the maintenance of dilute and acidic
malignancies due to the affects of analgesic use, reduced activ- urine through adequate uid intake (1800 to 2400 mL/day).
ity level, and reduced dietary ber intake. Management of Vitamin C (500 to 1000 mg/day) and citrus fruits and drinks
constipation includes administration of laxatives such as milk may assist in accomplishing acidic urine. Alkaline urine can
of magnesia, mineral oil, or lactulose and initiation of a plan cause encrustations on the stoma and peristomal skin damage
for prevention of constipation with use of stool softeners and with prolonged exposure. Acetic acid soaks may be applied
laxatives as needed. Cleansing irrigation may be necessary for three or four times per day to treat the encrustations until they
patients who normally do not irrigate. Cleansing irrigation is dissolve. Adjustments in the pouching system may be neces-
performed as described previously for individuals with a sary to prevent leakage of urine onto the skin, and the tempo-
colostomy who irrigate for control of bowel movements.40 rary addition of powder, paste, skin sealant, or some
Skin protection, uid and electrolyte maintenance, preven- combination of these products may be needed to aid healing
tion of blockage, and modication of medications are manage- of the affected skin.40
ment issues related to an ileostomy. Because of the high-volume
liquid or loose stools, protecting the skin from this efuent is
9=
critical. Leakage of efuent can cause chemical skin break-
case report
down and pain from the irritated skin. The ET nurse can work
Mrs. P, a Patient with Bladder Cancer
with the patient and family to determine the cause of the efu-
ent leak. It may be necessary to modify the pouching system, Mrs. P is a 75-year-old woman with bladder cancer. She was
to ensure a proper t. The peristomal skin may need to be diagnosed 2 months ago. She presented with symptoms of
treated with a powder or skin sealant, or both, to aid in heal- difculty passing urine, hematuria, and painful urination.
ing. The transit time of food and wastes through the gastroin- She had a 15-pound weight loss, signicant fatigue, and
testinal system and out through the ileostomy is rapid and anorexia. Investigations demonstrated a large mass within the
potentially contributes to dehydration and uid and elec- bladder with ureteral obstruction, intraabdominal mass, and
trolyte imbalance. Ensuring adequate uid and electrolyte liver lesions. Mrs. Ps care was complicated by underlying
intake is essential and may be accomplished by ingestion of medical conditions including sick sinus syndrome, chronic
sports drinks or nutrition shakes. Patients with an ileostomy hyperkalemia, nutritional depletion, and fatigue. Her past
are instructed to include ber in their diet, to bulk stools and medical history included treatment for ovarian cancer
promote absorption of nutrition and medications. 38 years earlier with radiation therapy. She met with the uro-
Food blockage occurs when undigested food particles or logical surgeon, medical oncologist, and radiation oncologist.
medications partially or completely obstruct the stoma outlet The plan of care was determined to be palliative care, with the
at the fascia level. It is necessary to instruct the patient and goal to keep her as comfortable as possible and provide the
family about the signs of a blockage, including malodorous, best quality of life. Her son became her primary caregiver,
high-volume liquid output or no output accompanied by with assistance from a daughter who lives out of town.
abdominal cramping, distention, and/or nausea and vomiting. Mrs. P underwent placement of an ileoconduit and began
These symptoms should be reported as soon as they occur. chemotherapy. Radiation therapy was not an option because
Blockage is resolved by lavage or mini-irrigation performed by she had already received maximum radiation exposure. She
the physician or ET nurse. A catheter is gently inserted into the required placement of a pacemaker at the initiation of
stoma until the blockage is reached, 30 to 60 mL of normal chemotherapy. She developed a hypersensitivity reaction, ery-
saline is instilled, and the catheter is removed to allow for thema without desquamation, on her abdomen at the site of
the return. This process is repeated until the blockage has a prior radiation reaction. This resolved with a short course
resolved. Patient teaching should be reinforced regarding the of oral steroids. Because of her limited activity, she developed
need to chew food well before swallowing, to prevent food a stage II partial-thickness pressure sore at the midlumbar
blockage. Time-release tablets and enteric-coated medications vertebral body. The pressure sore was clean and the wound
should be avoided because of inadequate or unpredictable bed was pink, with granulation tissue present, minimal exu-
absorption. Medications often come in various forms, including date, no necrotic tissue, and intact surrounding tissue.
Wound management included daily cleaning with soap and

water when assisted with bathing. Mrs. P reported pain at references
the site as being a 1 or 2 on a pain scale of 0 to 10. She was
able to empty and change the ileoconduit pouch with assis- 1. Lookingbill DP, Spangler N, Sexton FM. Skin involvement as the
tance from her son every 3 to 4 hours, including at night. presenting sign of internal carcinoma. J Am Acad Dermatol
1990;22:1926.
She changed the barrier and pouch every 3 days to avoid
2. Lookingbill DP, Spangler N, Helm KF. Cutaneous metastases in
leakage. She was able to eat orally without difficulty; how-
patients with metastatic carcinoma: A retrospective study of
ever, she had little to no appetite. Her serum albumin con- 4020 patients. J Am Acad Dermatol 1993;29:228236.
centration was 2.8 mg/dL. She also experienced nausea with 3. Rosen T. Cutaneous metastasis. Med Clin North Am 1980;64:
the chemotherapy. Unfortunately, she experienced increas- 885900.
ing pain in her lower abdomen and required increasing 4. Brodland DG, Zitelli JA. Mechanisms of metastasis. J Am Acad
amounts of narcotics. The use of the narcotics caused Dermatol 1992;27:18.
constipation and bowel obstruction, which was complicated 5. Ivetic O, Lyne PA. Fungating and ulcerating malignant lesions: a
by radiation changes to the bowel resulting from prior review of the literature. J Adv Nurs 1990;15:8388.
treatment. 6. Grocott P, Cowley S. The palliative management of fungating
To assist this patient in the promotion of palliation and malignant wounds: Generalising from multiple-case study data
using a system of reasoning. Int J Nurs Stud 2001;38:533545.
comfort, the following measures were advised. Mrs. P was
7. Naylor W. Assessment and management of pain in fungating
given a large bag to be connected to the ileoconduit pouch at
wounds. Br J Nurs 2001;10(22 Suppl):S33S36,S38,S40.
night, to allow for a full nights sleep for both patient and 8. Clark J. Metronidazole gel in managing malodorous fungating
caregiver. The ileoconduit pouching system was changed wounds. Br J Nurs 2002;11(6 Suppl):S54S60.
to a convex barrier, which decreased the frequency of appli- 9. Haiseld-Wolfe ME, Baxendale-Cox LM. Staging of malignant
ance change to every 5 to 7 days instead of every 3 days. In cutaneous wounds: A pilot study. Oncol Nurs Forum 1999;26:
terms of the pressure sore, the patient and her son were 10551064.
taught pressure relief techniques including side-lying and use 10. Van Leeuwen BL, Houwerzijl M, Hoekstra HJ. Educational tips
of pillows. The son was also taught placement of a hydrocol- in the treatment of malignant ulcerating tumours of the skin.
loid dressing over the wound site and to change this dressing Eur J Surg Oncol 2000;26:506508.
every 3 days. The patient was given a bowel regimen to assist 11. Seaman S. Dressing selection in chronic wound management.
J Am Podiatr Med Assoc 2002;92:2433.
in prevention of bowel obstruction; this regimen included
12. Gomolin IH, Brandt JL. Topical metronidazole therapy for pres-
stool softeners, laxatives, and increased uids. Mrs. P was
sure sores of geriatric patients. J Am Geriatr Soc 1983;31:710712.
encouraged to continue her pain medication regimen to 13. Newman V, Allwood M, Oakes RA. The use of metronidazole gel
maintain comfort. She was given antinausea medication to to control the smell of malodorous lesions. Palliat Med 1989;3:
minimize nausea associated with the chemotherapy. 303305.
o] 14. Bower M, Stein R, Evans TRJ, Hedley A, Pert P, Coombes RC.
A double-blind study of the efcacy of metronidazole gel in
the treatment of malodorous fungating tumours. Eur J Cancer
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Summary 15. Rice TT. Metronidazole use in malodorous skin lesions. Rehabil
Nurs 1992;17:244245,255.
16. Poteete V. Case study: Eliminating odors from wounds. Decubi-
Skin disorders are both emotionally and physically challenging
tus 1993;6(4):4346.
for patients and caregivers. Cutaneous symptoms may be the
17. Finlay IG, Bowszyc J, Ramlau C, Gwiezdzinski Z. The effect of
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the end of life (e.g., pressure ulcers), or simple changes in func- 18. Whedon MA. Practice corner: What methods do you use to
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require attention to basic care issues, creativity in management 987990.
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21. Cormier AC, McCann E, McKeithan L. Reducing odor caused by
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the distressing symptomology and improving quality of life.
988999.
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17o] Michelle Rhiner and Neal E. Slatkin
Pruritus, Fever, and Sweats

The constant itching is worse than the pain. There is no rest; it continues day and night. It feels like
a thousand ants are crawling all over my body.A patient
Key Points o]o]o]

Pruritus is not a pain state, but it causes considerable distress that PRURITUS
affects patients psychologically, physically, socially, and spiritually.
Treatment choices for pruritus should be made based on the type of Pruritus, derived from the Latin word prurire, which means
pruritus involved and should use both local and systemic measures. to itch, is a common and poorly understood symptom of
The management of fever and sweats in palliative care should be both localized and systemic disorders (Table 17-1). The dif-
focused on comfort measures. culties of dening the clinical characteristics of pruritus are in
part related to the ambiguities of the available terminology
and difculties in quantifying this subjective disorder. Itch,
while describing the actual experience of sensory discomfort,
is sometimes confused with scratching, the response used to
relieve the discomfort. The literature is also less than clear on
the distinction between itching and pruritus.1,2 Itch is prob-
ably best reserved to describe the actual sensory discomfort
that may arise in response to a eeting stimulus or a patholog-
ical disorder.3 The term pruritus, is generally used to refer to
a pathological condition in which the sensations of itch are
intense and often generalized and trigger repeated scratching in
an attempt to relieve the discomfort. Quantication of itch
intensity, which is necessary for both clinical management and
intervention studies, usually relies on the same 0-to-10 scale
used to rate pain and other subjective symptoms. An assess-
ment can also be made of itch behaviors, such as rubbing
and scratching, or the physical manifestations of these behav-
iors, such as the severity and distribution of scratch-induced
excoriation.
Although itching is not normally considered a pain state, its
neurotransmission parallels that of pain, and the discomfort it
causes can be just as distressing as conditions ordinarily consid-
ered painful. Words used to describe pruritus include intense
itch,stinging,burning,pins and needles,tickle,a creep-
ing or crawling sensation, and pain. The particular descriptor
used often depends on whether the cause of the itch is primarily
cutaneous or neuropathic and, in the case of cutaneous condi-
tions, which inammatory mediators have been activated. Like
persistent pain, persistent itch, especially when generalized, can
cause considerable distress, including alterations in mood and
345
Table 171
Differential Diagnoses for Pruritus
Systemic Causes Drug-Induced Causes

Endocrine/metabolic Release of endogenous mediators
Hyperthyroidism and hypothyroidism Opioids
Hyperparathyroidism and hypoparathyroidism Amphetamines
Diabetes mellitus Cocaine
Zinc deciency Hypersensitivity
Pyridoxine (vitamin B6) and niacin deciency Acetylsalicylic acid (aspirin)
Chronic renal insufciency and failure Quinidine
Dialysis dermatosis Niacinamide
Hepatic Etretinate
Cholestasis (e.g., primary biliary cirrhosis, drug-induced) Other medications
Extrahepatic biliary obstruction
Dermatological Causes
Hepatitis
Infections
Connective tissue disorders
Dermatophytosis
Sjgren syndrome
Folliculitis
Systemic lupus erythematosus
Infestations
Chronic graft versus host disease
Pediculosis (lice)
Infectious
Scabies
Syphilis
Inammatory
Human immunodeciency virus
Atopic dermatitis
Parasitic (e.g., onchocerciasis, lariasis)
Contact dermatitis
Neurological disorders
Drug hypersensitivity
Stroke, brain tumor, brain injury (hemipruritus)
Eczema
Multiple sclerosis (hemipruritus or paroxsymal pruritus)
Psoriasis
Peripheral neuropathy (usually small-ber neuropathy)
Urticaria
Post-herpes zoster
Miscellaneous
Tabes dorsalis
Insect bites
Notalgia paresthetica
Systemic mastocytosis
Other
Pregnancy-associated
Sarcoid
Xerosis (dry skin)
Pregnancy
Sunburn
Psychological/psychiatric
Psychosis, psychogenic causes
Malignancies
Polycythemia rubra vera
Carcinoid syndrome
Cutaneous T-cell lymphomas (mycosis fungoides,
Szary syndrome)
Other lymphomas and Hodgkins disease
Plasma cell dyscrasias (e.g., multiple myeloma) with
paraproteinemias
Other solid tumors
Hematological
Iron deciency anemia
Systemic mastocystosis
Source: Lowitt and Bernhard (1992), reference 12.

Pruritus, Fever, and Sweats 347
loss of sleep. Moreover, persistent scratching can cause skin also requires a motor, or efferent, nerve supply. The on-
excoriations and cutaneous infection, which can also be painful going turnover and replacement of epidermal cells, which
and contribute to the vicious cycle of itching.4 maintains the skins function as a protective barrier, requires a
rich vascular supply. This vascular supply is in part regulated
Skin Anatomy by sympathetic efferent bers. The skins function as a
temperature-regulating system also depends on changes in
The skin is the bodys first line of defense and its largest cutaneous vascularity as well as the function of sweat glands
organ system. It consists of two layers, the epidermis (outer and erector pili muscles (pilomotor muscles are responsible
layer) and the dermis (inner layer), with a basement mem- for goosebumps). Thermoregulatory sympathetic nerves
brane zone dividing the two. Subcutaneous tissue, consisting help to modulate body temperature by either vasodilatation or
primarily of fat and connective tissue, lends support to the vasoconstriction and by controlling the function of the sweat
neural and vascular systems that supply the skin and contains glands.
eccrine glands (ordinary sweat glands) and deep hair follicles. The sensation of itch can arise from either exogenous or
The cells of the epidermis produce keratin (a brous pro- endogenous stimuli. Regardless of the origin, evidence sug-
tein), which imparts durability to the skin and protection gests that the sensation is transmitted by otherwise inactive
against real-world frictions, and melanin, which protects against nonmyelinated C nerve bers. Such cutaneous sensory nerves
ultraviolet radiation. There are ve layers of the epidermis: stra- can be activated by a variety of chemical or physical stimuli
tum corneum, stratum lucidum, stratum granulosum, stratum and serve as the nal common sensory pathway for transmis-
spinosum, and stratum germinativum (the single layer of basal sion of the itch stimulus. The ultimate sensation of itch, there-
cells attached to the basal membrane). Within these layers are fore, often provides little information about the etiology or
found four major cell types: keratinocytes (which produce ker- provoking factors of itch. Chemical stimuli include caustic
atin), melanocytes (pigment-synthesizing cells), Langerhans cells and abrasive substances, which cause skin injury, as well as a
(derived from bone marrow cells, which assist in cutaneous variety of potential topical allergens, including additives in per-
immune responses and produce prostaglandins), and Merkels fumes and cleaning products. Physical stimuli that can cause
cells (mechanoreceptors).5 pruritus include sunburn, negative pressure, moving suddenly
The dermis separates the epidermis from the subcutaneous from cold to heat in the presence of moisture, low-voltage
tissues and is well vascularized, providing nutrients to the electrical stimulation, and the epicutaneous application of
more supercial layers of skin. The two layers of the dermis are caustic substances. Through uncertain mechanisms, repeated
the papillary dermis (which contains capillary venules, lymph scratching itself can promote itch. Scratching causes licheni-
vessels, and nerve bers) and the reticular dermis (the thicker cation, or thickening of the epidermis, which may decrease the
layer of the dermis, consisting of collagen bundles interlaced sensitivity of large nerve bers that may gate the perception
by elastic bers and ground substance). The cell types found in of itch.6 The exact mechanisms by which chemical and physi-
the dermis include broblasts (which secrete enzymes neces- cal stimuli cause itch are in some instances stimulus-dependent,
sary to remodel the connective tissue matrix), macrophages generally acting either directly on the free nerve endings or
(which synthesize enzymes that enhance or suppress lympho- indirectly through the release of histamine (from dermal mast
cytic activity and express inammatory mediators), lympho- cells) or other inammatory mediators.
cytes, and mast cells (which contain among other substances As discussed above, the neurotransmission of itch typi-
the pruitogenic mediator histamine). cally begins with activation of the free, or penicillate, nerve
endings of unmyelinated polymodal C nociceptive fibers,
Pathophysiology which lie at the epidermaldermal junction. The terminal
ends of these fibers form a rich arborization throughout the
Neural innervation of the skin is complex. As the barrier that granular layers of the epidermis and dermis. Why some sig-
functionally separates the self from the nonself, the skins sen- nals carried by these fibers are interpreted as itch and others
sory innervation must allow for all manner of touch, temper- as burning pain appears to depend on the pattern of neural
ature, and pain sensitivity while at the same time responding firing and/or of coactivation of other nerve fibers.7,8 Acti-
to changes in environmental conditions. Receptors for pain, vated C polymodal nociceptive fibers transmit their signals
heat, cold, touch, pressure, and pleasure are distributed widely back to their nerve cells in the dorsal root ganglia and then to
within the skin. These receptors are in turn innervated by a the spinal cord to synapse in the substantia gelatinosa of the
variety of afferent nerve types, including well-myelinated A dorsal horn. After interacting with interneurons within the
bers (which relay sharp pain, proprioception, direction of dorsal horn, fibers ascend in the anterolateral pathways
movement along the skin), myelinated D bers, and unmyeli- (including the spinothalamic tract) to terminate within the
nated C bers. Afferent C bers comprise 70% of all peripheral brain stem and thalamus. The role played by the cerebral cor-
neurons transmitting to the central nervous system (CNS) and tex in the mediation of itch remains undetermined but, as
are of three types: C mechanoreceptors, cold thermoreceptors, will be indicated below, appears to at least in part inhibitory.
and C polymodal nociceptors. Maintenance of the skins func- In both the laboratory and the clinic, brain injury can result
tion as a protective barrier and temperature-regulating organ in clinical itching.911
The neurochemical mediation of itch begins with activa- pruritus is less suggestive of systemic disease than is chronic
tion of the polymodal nociceptive C fibers. These contain generalized pruritus.
neuropeptides such as substance P, neurokinin A, vasoactive
intestinal peptide, and calcitonin generelated peptide.3,12 Of Secondary Pruritus. Secondary pruritus can be related to either
these, substance P is the best studied and most abundant; it exogenous agents, such as scabies, insect bites, and fungi, or
acts as the major puritogenic peptide. Its local release in endogenous factors, for example, atopic dermatitis, psoriasis,
response to neural activation may secondarily activate release and biliary obstruction. Pruritus caused by a specic disease
of histamine from dermal mast cells, as well as other inamma- may require medical or surgical intervention. As noted above,
tory mediators. These mediators may include prostaglandins, itch can arise from a variety of exogenous physical and chem-
interleukins, serotonin, and neuropeptides such as endoge- ical stimuli, as well as from a large number of endogenous
nous opiates.1,3,4 Capsaicin, an alkaloid from the chili pepper causes. Other endogenous causes for pruritus are not as well
plant, typically evokes pain when applied to the mucous mem- understood. In metabolic disorders, malignancies, and condi-
branes or skin, due to release of substance P. When applied at tions of organ failure, pruritus may be due to hormonal
very low concentrations, however, the sensation of itch rather imbalance, excessive production of cytokines, or build-up of
than pain may occur. When chronically applied, capsaicin metabolic by-products. Some of the most common causes of
depletes substance P and, therefore, can block transmission of pruritus in the palliative care setting include senile pruritus,
both itch and pain. Prostaglandins can lower the threshold to cholestasis, skin dermatoses, drugs, uremia, and psychogenic
chemically induced itch, though prostaglandin antagonists do etiologies.19
not typically have antipruritic effects except in certain hema-
tological disorders such as polycythemia vera.13 Other media- Various Common Clinical Situations
tors that produce itch are the endopeptidases. These include
such enzymes as trypsin, chymotrypsin, bradykinin, kallikrein, Atopic Dermatitis. Pruritus in atopic dermatitis (AD) arises
and papain, which have been demonstrated to cause pruritus from the release of proinammatory cytokines from mast cells
when injected into the skin even in the absence of dermal his- and keratinocytes.19 It is postulated that there is a dysfunction
tamine. Itching powder, or cowhage, which is derived from the of bone marrowderived cells migrating to the skin rather
legume Mucuna pruriens, contains endopeptidases that cause than an intrinsic cutaneous defect. Lymphocytic inltrates
the sensation of itch.6 One mechanism by which microorgan- of AD consist of T-helper cells. Both the Langerhans cells
isms, such as bacteria, fungi, and parasites, may cause itching is and macrophages found in AD lesions have surface-bound
the release of endopeptidases and other inammatory med- immunoglobulin E (IgE). The patterns of cytokine production
iators. are also distinctive, due to the presence of interleukin-4 (IL-4)
Serotonin is also an important mediator of pruritus, as with the acute inammatory phase and IL-5 and eosinophil
revealed by the response of various pruritic states to antis- inltration with chronic inammation.20
erotonergic therapy. 5-hydroxytryptamine-3 (5-HT3) antag-
onists (e.g., ondansetron, granisetron) have been used to Cholestatic Jaundice. In cholestatic liver disease, the accumu-
palliate pruritus associated with uremia and cholestasis.14,15 lation of bile salts is presumed to be a causative factor in pru-
The temperature-dependent pruritus seen with polycythemia ritus, though an association with bile levels in the skin and
and lymphoreticular malignancies may also respond to antis- blood has not been consistently demonstrated.21,22 Moreover,
erotonergic therapies. the response of pruritus to a variety of agents, each with dif-
fering mechanisms of action (e.g., ondansetron, rifampin, opiate
Etiology antagonists, propofol, cholestyramine, norethandrolone, etc.)
renders the primary causative factor even more obscure.2327
Pruritus, like pain, is multifactorial in origin and can be a More recent evidence points to the accumulation of prurito-
symptom of diverse pathophysiologies. Like pain, pruritus can genic endogenous opiates.2830
at times serve as a warning sign of external or internal threats
to the organism or exist only as a discomforting and unwel- Opioid-Induced Pruritus. Opioids can cause pruritus, whether
come symptom. Management of pruritus must begin with a administered by the systemic, intraspinal, or intracisternal
thorough assessment of the various etiological causes. Several route. Clinically, itching is most commonly seen after intrathe-
different classication systems for pruritus have been pro- cal administration; then, typically, it is initially localized and
posed and are useful in conceptualizing its causes. When no most severely experienced in and about the face. Epidural
cause can be found, even after a meticulous evaluation, it is administration, due to the higher systemic levels of opiate
referred to as primary, or idiopathic, pruritus. When symp- achieved with this route, tends to cause more generalized itch-
toms are severe and generalized, the patient should remain ing. Among opioid-naive cesarean section patients, as many as
under continued surveillance for the development of a possi- 60% to 80% receiving epidural morphine report pruritus,
ble malignancy.1618 Secondary pruritus can arise from either with more than half of these requiring treatment.31,32 The
dermatological or nondermatological causes, and the distri- occurrence among palliative care patients, most of whom
bution can be localized or systemic. Acute localized onset of are not opiate-naive at the time of epidural placement, is
considerably less, suggesting that tolerance to the pruritogenic tive responses to the pruritus (e.g., distress associated with the
effects of opiates develops with continued opioid exposure. itch based on a scale of 010, with 0 being no distress and
The mechanisms for opioid-induced pruritus are several. 10 representing severe distress).
Opioids are known to trigger mast-cell degranulation with
histamine release, which probably accounts for the pruritus Location. It is important to recognize whether the itch reported
seen with systemic opioid administration. Opioid antagonists by the patient is generalized throughout the body, focal to a sin-
can attenuate histamine-induced itch unrelated to opioid gle region, or more widespread but in a particular pattern. Itch-
administration, suggesting that endogenous opioids play an ing around skin creases of the wrists, axilla, and intertriginous
intermediary role in some forms of chemically induced pruri- areas, as well as the umbilicus and nipples, suggests scabies mite
tus.33 Morphine, which appears to cause greater histamine infestation. Anogenital itching may be due to contact dermatitis
release than fentanyl, meperidine, or oxymorphone, is most (e.g., from menstrual or continent pads, deodorants, washing
frequently implicated in opioid-induced pruritus. Changing products), Candida or other fungal infection, other infestations,
to an alternative opioid (opioid rotation) may be a successful or potentially psychogenic causes. Localized dermatitis, for
management strategy.3438 The fact that pruritus can be caused instance, with a dermatomal distribution, may indicate prior
by either intrathecal or intracisternal opioid administration herpes zoster infection or other segmental neurological abnor-
also speaks to a direct pruritogenic effect of opioids on the mality. Generalized pruritus may arise from a large number of
CNS. causes, including organ failure, endocrinopathy, or dry skin.
Pruritus Associated with Lesions of the Central Nervous Presence or Absence of Rash. Pruritus resulting from systemic
System. Pruritus may also arise from disorders of the CNS disease is seldom characterized by a rash, though with histamine
(e.g., cerebrovascular accident pruritus).10 Cases of hemipru- and serotonin release, a mild ush may be present. It is impor-
ritus have been described following stroke and with multiple tant to distinguish between a true rash and the stigmata of fre-
sclerosis (MS). Phantom itch can occur in the amputated quent scratching, including excoriations and dermatographia.
limb.39 Paroxysmal itching may also result from nerve root Focal rash may indicate contact sensitivity, evolving skin infec-
demyelination in MS.40,41 tion, or dryness of skin with associated aking.
Anorectal Pruritus (Pruritus Ani). While sometimes mistakenly Quality of Symptoms. The common itch consists of an irre-
viewed as a discrete diagnosis, anorectal pruritus is a common sistible and persistent tickling sensation, which is usually, at
symptom of a large number of disorders affecting the lower least transiently, relieved with scratching. In addition to bear-
colorectal area. Common etiologies include hemorrhoids, ing the tickling sensation common to the itch experience, itch
pinworms and other parasites, fungal infection, rectal irrita- from irritant dermatitis and herpes zoster typically has a burn-
tion and dryness from detergent soaps, rectal seepage, and ing quality. Actual pain may coexist with itch in herpes zoster
cryptitis from undigested food particles. Premalignant condi- and other neuropathic lesions or arise from the trauma of
tions, such as Bowens disease and Pagets disease, may also repeated scratching.
present with these symptoms. In one reported series, 16% of
109 patients evaluated for pruritus ani were found to have a Aggravating and Alleviating Factors. Topical application of heat
neoplastic lesion in the anorectal area.42,43 often worsens itching, whereas cold diminishes the sensation.
Worsening of pruritus after a hot shower is typical of Hodgkins
Uremia. Pruritus can be a disabling symptom of end-stage disease, myeloid metaplasia, and polycythemia vera. Consump-
renal disease and is not relieved by dialysis. Between 80% and tion of alcohol may also induce itching in these conditions.
90% of patients undergoing hemodialysis suffer from this
symptom.44 As with many systemic causes of pruritus, the Laboratory Evaluations. Laboratory tests are used most com-
pathogenesis is poorly understood. Recent studies have shown monly in cases where the manifestation of pruritus is of the gen-
affected patients to have high plasma histamine levels. These eralized type. In such cases, the evaluation should be directed
levels, as well as clinical pruritus, were signicantly reduced by towards an underlying systemic cause. Laboratory tests should
therapy with recombinant erythropoietin, the treatment include a complete blood count (with differential leukocyte
reaching its maximal efcacy after 3 to 4 weeks.45 Other poten- count), and liver, renal, and thyroid panels.19
tial causes of pruritus include secondary hyperparathyroidism,
uremic and other forms of polyneuropathy, xerosis, and Treatment/Management of Pruritus
hypervitaminosis A.
Local Dermatological Measures
Evaluation of the Patient with Pruritus
Topical Treatment. Dry skin (xerosis) is common in patients
Evaluation of pruritus should be thorough and systematic, who have undergone chemotherapy or radiation therapy.
applying the same principles used when assessing pain. Quan- Xerosis arises either as a direct effect of therapy or as a man-
tify as much as possible any physical ndings as well as subjec- ifestation of anorexia, dehydration, impaired nutrition, or
weight loss because the skin becomes more vulnerable under phigoid lesions associated with graft versus host disease, cuta-
these conditions to everyday traumas.46 neous skin lesions associated with chest-wall recurrence of
Xerosis is also a common cause of pruritus in the aged. breast cancer, and macerated rectal skin from persistent seepage.
Other causes are related to reduced activity of the sebaceous The preparation, when applied three times a day over affected
and sweat glands, thinning of the skin, decreased subcuta- areas, was highly effective at decreasing pain and pruritus.
neous tissue padding, and alterations in skin elasticity. Hydra- Creams compounded with antidepressants, such as doxepin
tion of the skin is essential and can be accomplished by soaking (Zonalon), may decrease itch by local inhibition of H1 and H2
in a warm bath for 15 to 20 minutes. The area should be patted receptors, as well as through antiserotonergic effects.4,20
dry, followed by application of an occlusive or moisturizer Topically applied corticosteroids can reduce inammation
(Table 17-2). This is referred to by Nicol and Boguniewicz20 as and itching associated with urticaria and other acute condi-
the soak and seal method and can relieve dryness by trap- tions but are generally not indicated for chronic use. Key con-
ping moisture in the skin. Vaseline is considered an occlusive siderations when prescribing topical steroids are the potency
but must be used after hydration because it does not contain of the product (high to low potency), the vehicle used (lotion,
moisture. Moisturizers can be classied as lotions, creams, or cream, ointment, solution, gel), and the area of application.
ointments. Lotions can potentially be more drying to the skin Examples of high-potency steroids include betamethasone
since they contain more water and evaporate more quickly. dipropionate (Diprolene 0.05%) ointment/cream and des-
There are a number of moisturizers (among them Eucerin, oximetasone (Topicort 0.25%) ointment/cream; mid-range
Aquaphor, Vanicream, Moisturel, and Cetaphil) available in preparations include triamcinolone (Kenalog 0.1%) oint-
large containers that are alcohol- and fragrance-free. Among ment/cream and betamethasone valerate (Valisone 0.1%)
patients for whom cost is a treatment-limiting factor, a cook- ointment; hydrocortisone (Hytone 2.5%) and 1% ointment/
ing shortening, such as Crisco, can be an inexpensive alterna- cream/lotion represent low-potency preparations.20 The side
tive moisturizer. Moisturizers and occlusives should be effects from prolonged use may include thinning and hypopig-
applied several times per day. Patients should also be advised mentation of the skin, secondary skin infections, acne, and
to wear clothing that is loose tting, less irritating, and mini- striae. If high-potency topical steroids are used under occlu-
mizes retention of heat and sweating to help reduce the itch sive dressings, greater skin and systemic absorption can occur,
sensation. The best type of fabric to wear is cotton clothing.47 which increases the likelihood of localized atrophy and systemic
For patients with pruritus, skin cleansing is important, espe- side effects (e.g., Cushings disease, cataracts, hyperglycemia,
cially if there are skin excoriations due to scratching. Many and avascular necrosis).20,49,50 In the same manner, ointments
patients additionally seek relief by bathing or skin washing. are more occlusive than other vehicles and, therefore, may
The skin cleansers used in these situations should have a neu- be associated with a higher skin penetration as well as a greater
tral pH and minimal defatting activity. Examples of such likelihood of side effects upon prolonged use. In hot, humid
products include Dove, Oil of Olay, Basis, and Aveeno. Oat- conditions, ointments may also cause folliculitis, thereby
meal baths and cold packs can be used to dry vesicles and increasing pruritus. Under these conditions, creams may be a
relieve itch. Other topical agents such as calamine and topical better option. Topical steroids should generally not be applied
Benadryl contain an antihistamine, which soothes and dries more often than twice a day. Hydration of the skin before each
vesicles and decreases scratching. Camphor, phenol, and application will promote absorption through the stratum
pramoxine may have local anesthetic properties, and menthol, corneum, thereby improving local absorption and efcacy.50 It
a counterirritant, gives the impression of a cooling effect to the is typical to start with a high-potency preparation and to move
skin.48 to a lower-potency agent as the dermatitis/pruritus improves.49
A morphine- and lidocaine-based cream has been used in
our clinical practice for pruritus described as burning and Antifungal Treatment. The most frequent supercial fungal
painful. Topical applications have been used for bullous pem- infection of the skin is Candida albicans. Typical areas of in-
fection involve the inframammary areas, inguinal folds, and
vulvovaginal areas, with pruritus being a common manifesta-
tion. Patients predisposed to candidiasis include those who are
Table 172 obese and have overlapping skin folds, those who are immuno-
Occlusives and Moisturizers suppressed, are on broad-spectrum antibiotics, are receiving
Vaseline (Chesebrough Ponds, Greenwich, CT) corticosteroids, or have diabetes. Skin involvement in the
inframammary or inguinal folds often appears as a creamy
Aquaphor ointment (Allscrips, Vernon Hills, IL)
white layer, but gentle removal of this layer may reveal an ery-
Eucerin cream (Allscrips)
thematous base, with areas of maceration and even papules
Vanicream (Pharm Spec, Rochester, MN) and pustules. Vulvovaginal infections will have a cheesy vagi-
Cetaphil cream (Galderma, Fort Worth, TX) nal discharge, with itching and excoriation of the vulva.
Moisturel cream (Westwood/Squibb, Buffalo, NY) Topical antifungal agents in use fall into three classications:
Crisco (Procter & Gamble, Cincinnati, OH) the polyene group (nystatin), the azole group (ketoconazole,
fluconazole, itraconazole), and the allylamine/benzylamine
group (ciclopiroxolamine, terbinane).51 The allylamine/ben- gal and other opportunistic infections. All of these can worsen
zalamine group is the newest generation of antifungals. They preexisting pruritus. Other side effects may include avascular
have greater bioavailability and a high cure rate with a shorter necrosis, hypertension, proximal muscle weakness, uid reten-
duration of treatment. To prevent recurrence, antifungal treat- tion, and osteoporosis.57
ment should continue for 5 to 7 days after signs of infection
have resolved. Ketoconazole should not be used in individuals Antihistamines. H1-specific antihistamines are useful prima-
with sulte sensitivity. Some antifungals are prepared with rily for histamine-mediated pruritus, such as that associated
corticosteroids; however, these should be avoided to prevent with hives; but these agents often fail to provide meaningful
side effects from the corticosteroids. relief in other conditions. A trial of the more sedating hista-
Fungal infections not responsive to topical therapy will mines is often recommended in initial treatment, but many
require systemic treatment. Systemic antifungals include grise- patients find that negative side effects outweigh the minimal
ofulvin, the azoles, and the allylamines. Gastrointestinal dis- benefit achieved. A trial of the nonsedating antihistamines
tress, headaches, exanthema, and liver toxicity (griseofulvin (fexofenadine, cetirizine, and loratidine) may be a more
and uconazole) are common side effects. reasonable first step in the treatment of nonspecific itch
Tar preparations may reduce inammation and limit the because these agents are well tolerated. The more sedating
use of topical steroids in chronic pruritus/dermatitis. They antihistamines, such as diphenhydramine, chlorpheni-
may be used at night and washed off in the morning. Tar prod- ramine, clemastine, hydroxyzine, and cyproheptadine, can
ucts are less costly; however, the smell and staining that occur be useful at night when itch interferes with sleep. In addition
with these products make them less than desirable. to its antihistaminic effects, cyproheptadine has antiseroton-
Phototherapy with ultraviolet A may be an option for some ergic activity, which may provide increased relief in some
individuals. Initially, treatments are given three or four times per patients.
week and, after several weeks, may progress to weekly. An oral
preparation of psoralen before phototherapy may also be used Local Anesthetics. Mexiletine (Mexitil) is similar in its chemi-
for a wide range of disorders from AD to renal disease.4 Side cal properties to lidocaine and has been used in patients with
effects include sunburn and an increased risk of skin cancer.20 intractable pruritus. Other anesthetic agents given IV, intra-
dermally, or intraarterially can block sensory transmission,
Systemic Measures including pruritus.1,58 Side effects include lightheadedness,
dizziness, tremors, and nervousness. Interferon- has been
Opioid Antagonists. Naloxone hydrochloride (Narcan) is effec- reported to be effective in relieving pruritus refractory to anti-
tive for relieving pruritus related to systemic and intraspinal histamines and steroids in B-cell chronic lymphocytic leukemia
opiates.33,52,53 Infusion of naloxone at an hourly dose of and in non-Hodgkins lymphoma. It is thought to inhibit the
0.25 mg/kg was successful at relieving pruritus in patients proliferation of eosinophil differentiation.59,60 Dermatomyositis
receiving a continuous morphine infusion and appeared to induced pruritus has been treated with high-dose human
enhance rather than diminish postoperative analgesia.52 Nal- immunoglobulin.61
buphine, an agonistantagonist analgesic, has also shown ef-
cacy under similar conditions.54 Naltrexone and nalmephene Antidepressants. Doxepin, amitriptyline, nortriptyline, and
are oral agents, with a longer half-life than naloxone, that imipramine have been used in the treatment of numerous
have been used in the treatment of pruritus associated with neuropathic pain states. Pruritus is frequently a comorbid fea-
cholestasis, uremia, AD, and urticaria.29,55 It is not known ture of neuropathic pain, and anecdotal reports suggest that
whether all centrally acting opioid antagonists are equal in the same tricyclic antidepressants that are efcacious in cer-
their antipruritic effects. When naltrexone was used for pruri- tain forms of neuropathic pain may also be benecial in treat-
tus in a patient with mycosis fungoides after initial success ing pruritus.6264 As the most antihistaminic of the group,
with subcutaneous naloxone, it was found to actually exacer- doxepin may be the most effective. Mirtazapine also has potent
bate itching56 (Table 17-3). Because of the potential of opiate H1 antagonism, as well as antiserotonergic effects at both the
antagonists to induce a withdrawal syndrome, neither pure 5-HT2 and 5-HT3 receptors. Since antagonism at each of these
antagonists nor agonistantagonists should be prescribed for individual receptor types has been associated with antipruritic
the treatment of pruritus except by those experienced in effects, mirtazepine may possess a theoretical advantage in
their use. pruritus treatment. The SSRI Paroxetine (paxil) has been
shown to be effective in patients with generalized pruritus
Systemic Corticosteroids. Systemic corticosteroids can be highly during terminal illness. The addition of a 5-HT3 agent such as
effective in patients with pruritus related to inammatory con- ondansetron (Zofran) and mirtazapine may enhance the ef-
ditions, neoplasms, and certain dysmetabolic states. The pre- cacy of paxil in this setting.47,65
sumed mechanism of action is inhibition of inammatory and
pruritogenic factors. Long-term use of these agents is limited Propofol. Subhypnotic doses of propofol have been success-
by the well-known sequelae of chronic steroid use, including fully used in the treatment of pruritus resulting from neurax-
increases in skin friability, hyperglycemia, and the risks of fun- ial administration of opioids and cholestasis from pancreatic
Table 173
Medications Used to Treat Pruritus in Selected Conditions
Allergic/Autoimmune Neuropathic Disorders

Drug rotation or discontinuation1 Local anesthetics (e.g., lidocaine,
Avoidance of offending allergen mexiletine, topical EMLA cream,
lidoderm patch)
5-HT3 antagonists13
Anticonvulsant agents (e.g., for paroxysmal
Antihistamines (e.g., diphenhydramine,
symptoms of multiple sclerosis)
cyproheptadine)
Capsaicin13
Corticosteroids
Topical Dermatoses
Systemic Skin cooling: increases the itch threshold,
Other immunosuppressive therapy can break vicious cycle
Opioid-Induced Pruritus Uremia

Opiate rotation (e.g., from morphine to 5-HT3 antagonists14,15
alternative opiate, such as fentanyl) Ultraviolet phototherapy
Low-dose naloxone infusion Erythropoietin
Low-dose nalbuphine infusion Parathyroidectomy
Propofol 24 Thalidomide
Lidocaine
Cholestatic Disorders
Acute palliative effects Polycythemia vera
Propofol Nonsteroidal antiinammatory agents
Naloxone and other opioid antagonists or -interferon
agonistantagonists
Ondansetron
External biliary drainage
Chronic palliative effects

Cholestyramine
Androgenic steroids
Phototherapy
Plasmapheresis
Rifampicin (enhances hepatic microsomal
function)
Ursodeoxycholic acid
Barbiturates
IV heparin
Charcoal
neoplasm, hepatic and bile duct metastasis, and primary bil- ment of a variety of neuropathic pain syndromes. When pru-
iary cirrhosis. Patients achieved rapid symptomatic control ritus complicates a known neuropathic disorder (e.g., pos-
following both single injections and continuous low-dose therpetic neuralgia), a therapeutic trial of one of these agents
infusion.23,24,66 While the mechanism of action is unclear, the should be considered.
effect was unrelated to sedation.23,24,66
Other Agents. Ondansetron, a 5-HT3 antagonist, has been used
Anticonvulsants. In general, anticonvulsant agents have in cholestatic, uremic, and opioid-induced pruritus.15,67,68 Benzo-
not been investigated for utility in the treatment of pruritus. diazepines, such as lorazepam and alprazolam, may be helpful in
Several anticonvulsant agents, such as carbamezepine and relieving itch if anxiety is also present.69 Benzodiazepines are
gabapentin, are of established clinical efcacy in the treat- not suggested for long-term use.
Sensory modulation can be accomplished through coun-

9=
terirritants, heat or cold, and transcutaneous electrical nerve
case study
stimulation (TENS). The Roman physician Scribonius
Ms. S, a Patient with Pruritus
Largus used the voltages of certain fish (electric rays and tor-
pedo fish) in 47 a.d. for treatment of gout and headaches.68 Ms. S is a 75-year-old woman with a history of non-
With the advent of the battery, TENS units that provided a Hodgkins lymphoma, cervical cancer, breast cancer, chronic
more reliable source of current were developed. When renal failure, hypothyroidism, hypertension, and seizure
applied directly over the pruritic area, surrounding area, or disorder. She was treated for a disseminated herpes zoster
acupressure points, TENS may block transmission of poly- infection diagnosed 3 months earlier that involved several
modal nociceptive C fibers, thereby blocking pain and pruri- dermatomes (T2L2). Ms. S was seen in clinic for complaints
tus.70,71,72 of pruritus in the right posterior chest that had been present
Capsaicin depletes substance P when applied repeatedly to for 3 months and thought to be a postherpetic neuralgia. The
the mucous membrane or skin, decreasing both pain and itch patient described the pruritus as a burning, unrelenting itch
sensations. When given in low concentrations, the stinging, and stated she was ready to give up. The following medica-
burning itch may initially be exacerbated.2 tions were prescribed and reported to be ineffective:
The gate control theory of pain states that impulses car- amitriptyline (Elavil) 20 mg at bedtime (qhs), hydroxyzine
ried by noxious stimuli to the spinal cord via thin myelinated (Atarax) 25 mg three times a day (tid), diphenhydramine
and unmyelinated fibers are blocked at the dorsal horn by (Benadryl) 25 mg tid po, and doxepin cream 5% to the
stimulation of larger-diameter myelinated nerve fibers by affected area four times (qid) a day. Nondrug interventions
pressure, vibration, or a TENS unit.71 Thick nerve fibers have included ice pack to the back for 20 min tid. Famotidine
a lower threshold than thin fibers and adapt more readily. No (Pepcid) 20 mg twice a day (bid), prednisone 20 mg bid, and
adaptation takes place in the large fibers when scratching or triamcinolone acetonide (Kenalog) cream 0.025 topically
vibration occurs. This may explain why scratching or rub- applied tid were also used, again without relief. The patient
bing the affected part sometimes relieves mild to moderate was admitted to the hospital for cellulitus in the right arm,
pain.71 presumably a secondary bacterial infection resulting from the
scratching, and was given cefazolin (Ancef ) IV.
Nonpharmacological Measures. In a palliative care setting, The patient denied any contact with pets, no new or
most patients are in the terminal phase of their disease. Pru- changed soap/detergents, cosmetics, body lotions/creams,
ritus during this phase of illness is primarily a result of medications, and no exposure to scabies or to new foliage.
changing organ functions. For example, liver and kidney She denied pruritus in any area other than her back.
function may be deteriorating. Thus, systemic therapy might Clinical evaluation: a frail, elderly woman who appeared
be more toxic to patients in the terminal phase of their uncomfortable and at times restrained herself from scratch-
illness. Hence, it is important to attempt nonpharma- ing. No vesicular eruptions were noted. Dry blood and
cological antipruritus measures to minimize further injury numerous scratch marks are present over the posterior
to organ functions and also to maintain quality of life thorax. Three raised erythematous areas were noted, in the
(Table 17-4). right scapular, lower thorax, and lumbar areas. Skin turgor
was good. There was no allodynia, and no lymphadenopathy
in the head/neck, supraclavicular area, or axilla. There was no
evidence of a rash, infection, or tracks. Blood urea nitrogen
and creatinine were stable, and thyroid function tests were
within normal limits.
Table 174
General and Topical Antipruritic Measures The impression was that this woman with a history of
in Palliative Care herpes zoster infection had developed postherpetic neuralgia.
Ms. Ss pruritus was treated as a postherpetic neuralgia, and
Prevent dry skin, excessive heat. a prescription for mexiletine (Mexitil) 150 mg bid was given
Humidify ambient environment. with instructions to take with food to minimize gastrointestinal
Lubricate frequently, especially after bathing. side effects. Ms. S was asked to titrate by one pill (150 mg) every
Avoid contact irritants (e.g., wool, hairy pets, cleansers). 5 days to a total of 300 mg tid. Amitriptyline (Elavil) 10 mg was
prescribed with instructions to take every evening at 8:00. By
Apply cold application (ice, compress).
taking this medication earlier in the evening, the patient was
Wear loose-tting, cotton clothing.
less likely to feel hungover in the morning.
Apply appropriate topical antipruritic agents. The patient reported improvement in the itchiness and
discomfort in her back once the mexiletine was started;
Sources: Adapted from Krajnik (2001), reference 104; Pittelkow (2004),
reference 105; and Charlesworth (2002), reference 106. however, she developed a tremor that she noted while in
church. The patient became frightened and stopped the
medication. Ms. S was evaluated in an urgent-care clinic by o]o]o]

an on-call physician. Upon examination, an essential tremor FEVER
was diagnosed and the patient was advised to restart the mex-
iletine at 150 mg tid for 24 hours and then to increase to Fever is dened as a rise in normal body temperature (above
300 mg tid. Ms. S was reevaluated later that week and 37 1C), as a temperature 38C for three consecutive read-
reported dizziness when taking mexiletine 300 mg tid. She ings performed 1 hour apart, or as one reading 38.5C.73 Fevers
stopped the amitriptyline at night and continued to report can be a result of inammation (including malignancy), infec-
relief of the pruritus with the use of this drug. The patient tion, immunological disorders, hypermetabolic states (e.g.,
was asked to decrease the mexiletine to 150 mg tid and to thyrotoxicosis), hyperthermia, heat stroke, or, uncommonly,
restart the amitriptyline 10 mg qhs. The patient called several disorders of the CNS (e.g., cerebral stroke) (Table 17-5). Febrile
days later to report that the pruritus was not controlled at illnesses have been recorded in the medical literature as far
this dose and that she was afraid to increase the dose because back as Hippocrates (5th century b.c.e.), though it was not
of side effects (i.e., tremor). The patient was seen in clinic, possible to actually measure body temperature until the devel-
and it was decided that since the mexiletine was the only opment of the thermometer in the mid-19th century.74,75
medication that provided any relief of her symptoms, the Determining the etiology of a fever is often essential to pro-
dose would be adjusted again to 150 mg in the morning and viding the most appropriate treatment of this symptom as well
evening and 300 mg at hs; propranolol (Inderal) 10 mg tid as of its underlying causes. Deciding when to treat the actual
was added to decrease the tremor. symptom of fever depends to a great extent on the symptoms
o] associated with it (e.g., tachypnea, tachycardia, hyperhydrosis,
feeling of dissipation, fatigue), age, general medical condition,
any comorbid conditions or diseases, and the goals of care rel-
Nursing Implications ative to the patients stage of illness. For example, the treat-
ment of fever and associated tachycardia in an older patient
Assessment
with a known history of advanced coronary artery disease
but few other comorbid illnesses may itself be life-saving.
1. Describe and document the color, characteristics,
Treating fever usually provides improved patient comfort.
and size of any lesions.
However, treating fever may at times have the unintended
2. Obtain a thorough history of any new products
effect of inhibiting immunological responses mounted as a
(detergents, lotions, soap), exposure to new pets,
means of defense against infectious pyrogens.75 To what extent
recent travel and outdoor exposure, or any new
such inhibitory responses are of clinical signicance is largely
medications.
unknown.
3. Obtain a thorough patient and family history of
In the setting of palliative care, decisions on treating an
allergies (e.g., food or seasonal), treatments previ-
infectious etiology of fever can at times trigger controversy since
ously used and their success, travel, hikes, and any
the treatment may prolong the dying process. How aggressively
exposure to known infectious agents/insect bites.
infection should be treated at the end of life depends on the
Do other members of the family or others with
factors listed above and the plan of care agreed upon by the
whom the patient has had social contact have
patient, family, and health care professionals.
pruritus?
5. What has been the general health of the patient
during the several weeks preceding the development Pathophysiology
of pruritus?
The bodys thermoregulatory system is controlled by the pre-
6. A skin biopsy may be required to determine the
optic region of the anterior hypothalamus. Under ordinary
etiology of the pruritus.
circumstances, the hypothalamus maintains the core body
temperature by establishing a thermal set-point. This set-
Management point, analogous to a thermostatic control, may be affected by
the presence of various pyrogens, or fever-causing substances.
1. Teach safety measures with use of sedating antihist- Pyrogens may be produced by and released directly from
amines, such as not driving or operating potentially infectious pathogens (bacteria, viruses, or fungi). These are
dangerous equipment until tolerance to the sedating typically called exogenous pyrogens. Pathogenic agents may
effects of these medications has been established. also stimulate the release of endogenous pyrogens from the
2. Psychological support is needed for any new diag- immune system. The four best recognized endogenous pyro-
nosis of malignancy. gens are IL-1, IL-6, tumor necrosis factor- (TNF-), and inter-
3. Educate patients concerning the proper use of topi- feron (IFN). Systemic release of either exogenous or endogenous
cal medications and the potential side effects. pyrogens can trigger the fever response by elevating the hypo-
4. Frequently assess the skin in pruritic areas for the thalamic set-point so that compensatory temperate lowering
presence of any secondary infections. mechanisms are not activated until higher-than-normal
Table 175
Common Causes of Fevers
Tumor Autoimmune and allergic processes

Hodgkins and non-Hodgkins lymphoma Connective tissue disorders (systemic lupus)
(cell-mediated immune deciency) Anaphylactoid reactions
Hypernephroma Rheumatoid arthritis
Carcinoma metastatic to the liver Polymyalgia rheumatica
Leukemia Acquired immunodeciency syndrome
Multiple myeloma (altered Medications. (e.g., antibiotics)
humoral immunity)
Infections
Ewings sarcoma
Bacteria, fungi, viruses, and parasites
Tumors that become necrotic, with
Tuberculosis
secondary infections
Infective endocarditis
Adrenal carcinoma/pheochromocytoma
Liver abscess/subphrenic abscess
Primary or metastatic tumors of
the thermoregulatory Anicteric hepatitis
areas of the brain Nosocomial infection
Obstructive solid tumors of the Environmental
GI, genitourinary, Microbial ora that colonize in the naso-
or respiratory system pharynx, small and large bowel, and skin
Cancer and treatment Travel to third-world countries
Changes in the bodys natural defenses Exposure to microorganisms from
Foreign bodies (catheters, venous farm animals
access devices) Allergic response to environmental allergens
Degree and duration of neutropenia Foods (immunocompromised patients)
Immunosuppression Fresh fruits and vegetables
Chemotherapeutic agents (e.g., bleomycin) Fresh owers
Blood products Spices
Splenectomy Tobacco
Inammatory processes Others
Thrombophlebitis Constipation
Radiation Dehydration
Heat
Trauma
Surgery
Cell necrosis (ischemic)
Pulmonary embolism
Regional enteritis
Granulomatous disease of the colon
Ulcerative colitis
temperatures are reached. At this time, it is not known if other antipyretic agents work. Regardless of the actual mecha-
peripherally released cytokines cross the bloodbrain barrier to nism, the hypothalamus continues to regulate body tempera-
directly inuence the hypothalamic set point, or whether this ture, though this regulation is now around a higher set-point.
process occurs through other cytokine mediators or even neu- When an antipyretic is given or the pyrogen level is decreased,
ral means. At the hypothalamic level, prostaglandins, especially the hypothalamic temperature is reset back to normal.73,75,76
prostaglandin E2, appear to play an important role in establish- Temperatures above 41C suggest that the source of fever may
ing the hypothalamic set-point. It is presumably through these be either abnormal heat production (as in malignant hyper-
inhibiting prostaglandin mediators that aspirin and certain thermia) or problems with heat dissipation (as in heat stroke).
Phases of Fevers skin integrity and mucosal barriers due to multiple venipunc-
tures and lines or catheters, other invasive procedures, decubi-
There are often three stages of a fever. The cold stage occurs tus ulcers, cutaneous infections including herpes zoster, and
when there is a physiological discrepancy between the hypo- mucositis. Bacteria, as well as other pathogens, induce the pro-
thalamic set-point, now at a higher level, and the existing body duction of endogenous pyrogens in macrophages and mono-
temperature. In response, hypothalamic mechanisms signal cytes. These pyrogens include TNF- and IL-1. Release of
for peripheral vasoconstriction to occur, which diminishes these substances into the inammatory mix in turn stimulates
cutaneous heat loss, and for shivering, which generates heat the cascade of other cytokines, including IL-1, IL-6, and the
through increased muscle activity. The hot stage, or febrile prostaglandins.73
phase, occurs when body heat is maintained at a higher-than- Increasing body temperature can itself increase phagocytic
normal level due to the higher set-point of hypothalamic ther- activity and affect the type and amount of pyrogenic cytokine
moregulaton. During the febrile stage, symptoms often include released.77 Although fever may contribute in this fashion to
ushing of the skin, increased sense of thirst, sensation of stimulation of the immune system, the tachycardia and hyper-
increased body warmth, lethargy, and restlessness or irritabil- metabolism caused by the fever can prove fatal in an individual
ity. Less commonly seen CNS manifestations include halluci- who is immunocompromised, in advanced cancer patients,
nations and seizures, though the latter are seen almost and in those with acquired immunodeficiency syndrome
exclusively in young children. During febrile states, the basal (AIDS).76,79,80
metabolic rate is increased as tissue metabolism and oxygen
requirements increase by 10% to 13% for each 1C increase in Inammation. Inammation occurs with cellular damage due
body temperature. Associated physiological changes include to cytotoxic agents, trauma (including surgery), radiation ther-
tachycardia with an increase in cardiac output and work- apy, or exposure to heat. Fibroblasts and endothelial cells, as
load.76,77 Decreases in the level of pyrogen produced or admin- well as macrophages, release endogenous pyrogens, such as IL-
istration of an antipyretic at least temporarily resets the 1, IL-6, and TNF.73,74,77 Postoperative uid collections and large
hypothalamic set-point. During the defervescence stage, or internal hematomas are therefore common causes of fever in
stage 3, heat dissipation is increased due to vasodilatation and the surgical patient. Although circumscribed supercial inam-
sweating, causing an increase in evaporative skin cooling.77,78 mation rarely causes signicant fever, inammation can pre-
Heat-generating mechanisms (e.g., shivering) are inhibited, dispose to secondary infection and a febrile state.76,79,80
and the body temperature falls back within the normal Radiation therapy, for example, can cause fevers through sev-
range.79,80 eral mechanisms. First, immunocytes and endothelial cells
damaged by radiation may release endogenous pyrogens. Sec-
Etiology ond, radiation therapy may alter skin integrity (dry and moist
desquamation) and damage mucosal barriers, thereby increas-
Immunological Responses. Blood products and certain med- ing the patients predisposition to infection. Infection may also
ications, as well as allergic reactions and connective tissue disor- be associated with radiation-related myelosuppression when
ders, liberate substances which, in turn, activate release of the radiation eld includes the primary sites of blood cell pro-
endogenous pyrogens, the three best recognized being IL-1, duction, such as the sternum, long bones, and iliac crests.8183
IL-6, TNF, and IFN. A variety of secondary immune reactions Finally, cranial radiation may cause temporary perturbations
may trigger the release of pyrogens, including anaphylactic reac- in the hypothalamic set-point.
tions (e.g., asthma), cytotoxic reactions (e.g., blood-transfusion Vascular causes of fever may include thrombophlebitis
reactions), immune complexmediated reactions (e.g., serum with or without pulmonary emboli, and regional or systemic
sickness), and delayed hypersensitivity reactions (e.g., contact tumor-associated vasculitis. The cause of fevers in these set-
dermatitis and allograft rejection). Primary immune disorders tings is thought to be release of pyrogens from phagocytic and
that may be associated with a fever include systemic lupus ery- endothelial cells. Several cancers, especially lymphomas and
thematosus, giant cell arteritis, and rheumatoid arthritis. gastrointestinal malignancies, are associated with a higher-
than-expected risk for developing deep-vein thrombosis. It is
Infections. Infectious pathogens elaborate pyrogens, such as not uncommon, in fact, for fever to be the earliest sign of
bacterial lipopolysaccharides, which, in turn, promote the thrombophlebitis. In one study of pulmonary emboli, approx-
release of endogenous pyrogenic cytokines by stimulating the imately 18% of the patients had malignancies, 54% had a fever
bodys immune and other defensive reactions. The principal >37.5C, and 19.6% had a fever >38C.84
origins of these cytokines are activated monocytes, macro- Even in the absence of vascular inflammation, fever may
phages, and lymphocytes, which are recruited to respond to be the presenting symptom of many malignancies, including
the infection. Endogenous pyrogens can also be produced by Hodgkins lymphoma, bronchogenic carcinoma, breast can-
endothelial cells and fibroblasts. cer, non-Hodgkins lymphoma, and multiple myeloma. Fevers
Of pathogens found in new fevers, 85% to 90% are of bac- related to tumors may be associated with the release of
terial origin. Common origins of bacterial infections in cancer pyrogens, such as TNF- and IL-6, either directly from the
and immunosuppressed patients include the breakdown of tumor or from tumor-reactive hypersensitivity reactions.73,76,77
Pulsatile release of tumor pyrogens can cause a waxing and because of the frequency of procedures, such as venipuncture
waning of fever, which correlates with disease activity.73,76,8587 and the placement of IV catheters, which violate the integrity
The naproxen test has been used as a diagnostic tool to differ- of skin defense mechanisms. Nosocomial infections account
entiate between a neoplastic fever and a fever associated with for more than 80% of infections in cancer patients.90
an infection. Chang and Gross88 reported complete response
of neoplastic fevers to naproxen within 24 hours of starting the Opioids. Opioids have been found to cause a ush (vasodila-
drug, whereas no patient with an infectious fever showed any tation) and sweating, especially involving the face, but have
improvement.73,81 It was postulated that the fever suppres- not been associated with fever.91 Meperidine hydrochloride
sion was related to the interference/suppression or release of (pethidine hydrochloride) in combination with a monoamine
humoral factor(s).88 The specicity of this test is uncertain, oxidase inhibitor can cause hyperpyrexia, muscle rigidity, CNS
and the possibility of infection should not be dismissed on the excitability, or depression that can be severe or fatal.73,92 Abrupt
basis of this test alone. Other noninfectious etiologies, such as opioid cessation results in withdrawal symptoms, including
allergic reaction, drug toxicity, and adrenal insufciency, also restlessness, rhinitis, abdominal pain, and fever. Withdrawal
need to be considered.73 from benzodiazepines may also cause a fever.73
Blood Transfusions. Allergic responses to white blood cells in Clinical Evaluation

blood products may be avoided by using irradiated blood
products, removing white blood cells from blood (leukaphere- Patient History. A thorough history must be obtained to deter-
sis), or premedicating with antihistamines, hydrocortisone, mine if there are coexisting symptoms suggestive of a urinary
and/or antipyretics.78 tract infection, upper respiratory infection, or any exposure to
a person with infection or who has had a live-virus vaccination.
Medications Associated with Fevers. Certain medications may A bowel history should be conducted to rule out constipation.
be antigenic; that is, they are interpreted by the body as a foreign If the patient has cancer, when was the last surgery? When was
substance, thereby initiating an allergic or immune response the last course of chemotherapy or immunotherapy? When was
with accompanying fever. The categories of drug most often the last course of radiation therapy? Is there any history of
associated with a febrile response include antibiotics, cytotoxic blood transfusion within the preceding 6 months? It is impor-
agents, cardiovascular drugs, and biological therapies such as tant to determine the pattern of the patients fevers, the time of
the interferons and interleukins.80 The classes of antibiotics day they occur, and the number of temperature peaks over
most commonly associated with fevers are the penicillins, 24 hours. In patients receiving end-of-life care, the focus of the
cephalosporins, and certain antifungals, such as ampho- treatment plan is palliation of symptoms. Determining the
tericin.73 Cytotoxic drugs such as bleomycin trigger a fever in source of the fever will guide the clinician as to the appropri-
25% of individuals, and anaphylaxis results in 1% of cases.73 ate intervention. If the patient is severely constipated, laxative-
induced evacuation may not only reduce the fever but also
Hemorrhage. Gastrointestinal bleeding may result in fever improve nutritional status and eliminate or reduce nausea, if
within 24 hours, which may last a few days to a few weeks.73,74 present. Treating a urinary infection may also improve com-
Although this has been mentioned in the literature, no clear fort, promote rest, and improve cognition. Use of oral antibi-
explanation has been offered, but fever may be related to the otics to treat a urinary tract or upper respiratory infections
release of IL-1 from the damaged gastrointestinal mucosa.74 may be appropriate to palliate symptoms, such as the distress
that may accompany tachypnea, tachycardia, or shaking chills.
Neutropenia. Neutropenia is dened as a polymorphonuclear Antibiotics are used in this manner to palliate symptoms due
neutrophil count of 500/mL or less, which may arise from to infection rather than to eradicate the infection properly. If
decreased production of white blood cells (myelosuppression antibiotic therapy causes increased physical distress in the
from chemotherapy or radiation therapy or tumor inltration form of pruritus, drug-induced fevers, or nausea and vomit-
of bone marrow with inhibition of white blood cell producing, the role of antibiotic treatment needs to be reevaluated, to
tion) or increased loss of white blood cells (usually through an keep the focus of care on quality-of-life issues. As with all pal-
autoimmune process). Of patients with neutropenia, 50% to liative treatments, it is important to routinely reassess goals
70% experiencing a fever will die within 48 hours if left with the patient and family to be certain that everyone is in
untreated because of rapidly progressive sepsis.78,80,89 agreement.
Miscellaneous Factors. Several general medical problems can Physical Examination. Since common sites of infection include
be identied as contributing to fever (see Table 17-5). Dehy- the skin, respiratory tract, urinary system, perianal region, oral
dration limits the bodys compensatory response of heat loss cavity, and sinuses, a comprehensive evaluation for infection
through sweating. Severe obstipation has been associated with should not overlook any of these sites. In chronically ill and
fever, due possibly to associated dehydration or ischemia of emaciated patients, special attention should be paid to the skin
the bowel, causing a local inammatory response. Hospitaliza- overlying bony prominences as well as the perineal and peri-
tion itself is a frequent cause of infection and fever, probably anal regions, evaluating for decubitus lesions and other areas
of skin breakdown, necrotic tumors, and/or infection. If the they cause shivering, which is heat-generating. Oral uids
patient has an IV line, central catheter, or other central venous and/or ice chips should be encouraged, but the benet of using
access device (e.g., Porta-Cath), these need to be carefully eval- parenteral or enteral uids is highly debated, and it remains
uated for signs of infection. Decisions on the appropriateness undetermined whether hydration improves cognition, espe-
of blood and sputum cultures and radiographic tests need to be cially in individuals using opioids.93,94 Oral care with soft appli-
made on a case-by-case basis, depending on the patients status cators should be offered frequently by the family caregiver; in
and the likelihood that test results will lead to a meaningful addition to promoting the patients comfort, this allows the
therapeutic intervention. This said, performance of a urinalysis caregiver to participate in the loved ones care. A salt-and-soda
is noninvasive and inexpensive and can provide information solution can be used instead of mouthwash. A solution can be
leading to straightforward therapies offering symptom relief. made by boiling 1 quart of water and adding 1 teaspoon of salt
and 1 teaspoon of baking soda. Chill the solution and use several
Management of Common Sources of Skin times a day, as desired. Discard any unused solution after 1 week.
Infection in End-of-Life Care Vaseline or other lubricants should be placed on the patients
lips to prevent dryness and cracking. Special attention to skin is
There are several interventions nurses can initiate to manage essential, especially to skinfolds; clothing and linens should be
skin infections based on the location, characteristics of the changed frequently. Aquaphor, Eucerin, aloe vera, or Vaseline
affected area, and organism(s) involved. Dakins solution is Intensive Care can be applied to maintain skin integrity. Lym-
composed of bleach, sodium bicarbonate, and sterile water. It phedema patients using a Jobst and Sigvarus compression gar-
can be prepared as a 0.25%, 0.5%, 0.75%, or full-strength ment should be instructed to avoid products that contain
solution, depending on the contamination of the wound, and petroleum because they break down the rubber in the garment.
may be used to irrigate or pack wounds contaminated with Avoid skin products that contain alcohol because they may
Pseudomonas. Clean, healthy skin should not come in contact actually increase dryness and cause chemical irritation.
with Dakins solution because it is extremely irritating. A bowel history should be obtained and a laxative or sup-
Hypertonic saline gels (Panal) can debride thick, necrotic pository given if constipation is present. An enema or disim-
eschar on a decubitus without surgical intervention. Morphine paction may be required. Corticosteroids are effective as
(powder or concentrated solution) is added to commercially antipyretics and can reduce inammation and pain but are
prepared ointments and substances used for wound healing, potentially dangerous insofar as immune function is hampered
such as Silvadene and lidocaine, and to DuoDERM powder to and an infectious process may be masked.77 The risk:benet
pack inside wounds. These mixtures may be helpful in reduc- ratio with respect to goals of care must always be considered.
ing secondary skin infections as well as promoting comfort, In a palliative care setting, neuroleptic agents can be used for
and can be used to pack a venous stasis ulcer, decubitus, or centrally mediated fevers. Chlorpromazine (Thorazine) has
fungating lesion. Fungal infections, generally characterized by been used primarily in this setting, probably because among
a foul odor, maceration of the skin, and occasionally super- the neuroleptics it is most likely to cause vasodilatation.95
cial bleeding, are commonly seen in the intertriginous areas Palliative radiation may be needed if the fever is tumor-
(inframammary and inguinal folds). Daily cleansing with soap related, as indicated by the tumor type and general condition
and water, thorough drying of the affected area, and use of of the patient.
antifungal powder or lotion (nystatin, clotrimazole) can be
applied twice or three times a day until healed.
9=
case study
Treatment of Fever Mr. D, a Patient with Fever
Comfort should be the primary goal for the dying patient with Mr. D was an 80-year-old retired pediatrician with a recent
a fever. Treatment should be initiated with antipyretics, such history of fever of unknown origin, leukocytosis, elevated
as acetaminophen, aspirin, or ibuprofen, which are the only erythrocyte sedimentation rate (ESR), anemia, and myalgias.
drugs approved by the Food and Drug Administration for this The patient had been in good health until his return from
purpose. Mexico 2 months earlier, when he developed chills, myalgias,
Acetaminophen can be administered in tablet, liquid, or nonproductive cough, and fevers. Antibiotics were prescribed
suppository form. For tumor-related fever, a nonsteroidal when a chest x-ray showed a left lower-lobe inltrate. Myal-
antiinammatory drug (NSAID) may be especially benecial. gias continued, especially in the triceps muscles and shoulder
The presence of thrombocytopenia may be a limiting factor in girdle muscles. The myalgias were partially relieved by
the selection of NSAIDs. The specic cyclooxygenase-2 (COX- NSAIDs. Throughout the 2 months, he had intermittent
2)inhibiting antiinammatory agents, such as celecoxib (Cele- spikes of fever, with episodes of profuse diaphoresis, general-
brex), may in certain instances be preferred in this setting. ized malaise, anorexia, and a 15-lb. weight loss. He was admit-
Cooling measures, such as a tepid cloth to the patients ted to a local hospital, where he underwent extensive testing.
forehead, may be comforting; otherwise, cooling measures The past medical history included Guillain-Barr syndrome
(such as ice bags and cool cloths) should be avoided because in 1945, right bundle-branch block, transurethral prostatectomy
in 1988, and prostate cancer without evidence of metastatic dis- which are located in the preoptic anterior hypothalamus. The
ease. There was no history of rheumatic fever or heart murmur. more abundant warm-sensitive neurons respond to a rise in
Clinical evaluation revealed the patient as an alert, oriented temperature in the periphery, whereas the cold-sensitive neu-
man with intact cognitive functions. Funduscopic examina- rons are triggered by a decrease in body temperature in the
tion was impeded by cataract formation, but no Roth spots or periphery.1 Body temperature is read at various thermore-
areas of hemorrhage were visible. There was slight focal ten- ceptors in the skin, spinal cord, and brain stem. Hypercapnia,
derness of the proximal supercial temporal artery, barely plasma osmolality, intravascular blood volume changes, and
notable on the right and mild on the left. There was no nodu- dehydration can affect body temperature and set-point.1
larity or induration along the course of either of these arteries. The autonomic nervous system both transmits the ther-
Carotid bruits were absent and extracranial artery pulsations moregulatory adjustments to the CNS and has a measure of
were normal. There was no nuchal rigidity. Motor examina- thermoregulatory control independent of the CNS. Post-
tion was normal for age, without muscle masses or tenderness, ganglionic sympathetic axons innervate sweat glands, blood
except in the calves. He was, however, unable to rise from a vessels, and piloerector muscles. Through adjustments in
chair without the use of his arms and was unsteady on his adrenergic vasoconstrictor nerve bers, cutaneous blood ow
feet. Gait was wide-based and waddling, with some unsteadi- is increased or decreased depending on the need to dissipate or
ness. Sensation was intact to all modalities, though Rombergs conserve heat. Cholinergic bers innervate the eccrine glands.
sign was positive for postural imbalance and tandem gait was Thermal sweating occurs when the hypothalamic set-point is
slightly abnormal. Radial pulses were equal, and pedal pulses exceeded. Signals are transmitted from the hypothalamus by
were present bilaterally. No cutaneous stigmata of infection or the autonomic nervous system to the effector sweat glands and
vasculitis was appreciated. Heart sounds were normal, without cutaneous vasculature. Generalized diaphoresis ensues, which
murmur. There was no hepatomegaly or abdominal tender- lowers body temperature. Emotional sweating is controlled
ness. Areas of bone tenderness were absent. primarily by the limbic system rather than the hypothalamus,
The impressions were (1) fever of unknown origin, and and may affect areas of the body differently. Whereas sweating
(2) rule out temporal arteritis. may be either depressed or increased over the trunk and prox-
The diagnostic data were as follows: lumbar puncture was imal limbs, sweating always increases in the palms of the
negative, carotid ultrasound showed moderate amount of hands and soles of the feet. Under given circumstances, the
plaque formation in both common carotid arteries with no quantity of sweating in response either to temperature eleva-
signicant stenosis, and temporal artery biopsy showed giant tion or emotion is often dependent on age, gender, exercise,
cell arteritis. hydration, ambient temperature, and sweat gland blood ow.
The patient was treated with prednisone 20 mg tid, with Disorders of sweating include hyperhidrosis (excessive sweat-
regular monitoring of ESR. ing), anhidrosis (absent or decreased sweating), and gustatory
The patient enjoyed complete relief of fevers, night sweats, sweating (primarily of the face, associated with diabetes). Each
and myalgias. He was encouraged to exercise, and bone- of these disorders can arise from dysfunction of either the
density studies and blood-sugar levels were monitored during neural innervation or the sweat glands themselves or both.
the time he was on prednisone. His ESR returned to normal,
and prednisone was gradually tapered. Etiology
o]
Anhydrotic ectodermal hypoplasia is an inherited condition in
which heat loss through perspiration may be inadequate to
o]o]o] lower body temperature. Other cooling methods must be
SWEATS used for thermoregulation (e.g., submersion in cool water,
exposure to cool ambient temperatures, cool cloths) to lower
The sweat glands of the skin, the piloerector muscles, and the temperature.
vascular skin blood vessels are controlled, at least in part, by Hyperhidrosis may be a compensatory mechanism for
the sympathetic nervous system and are intimately involved in anhidrosis of other body areas. Thermoregulatory sweat test-
temperature regulation. Vasodilatation and sweating allow for ing can be conducted to assess the peripheral and central sym-
evaporative heat loss to lower body temperature in a hot envi- pathetic pathways. Reduced or absent sweating patterns can be
ronment, with fevers, or during exercise. Approximately 5% of identied and the pathology identied as either pre- or post-
cancer patients experience sweating as a direct result of malig- ganglionic abnormalities or abnormalities of the sweat glands.
nant disease.9698 Abnormalities of sweating, either excessively dry or wet skin,
accompanied by trophic skin changes and thin shiny skin are
Pathophysiology signs of a peripheral neuropathic disorder. When seen in the
setting of limb pain, they typically indicate that the pain is
The hypothalamus interprets signals from the central and arising, at least in part, on a neuropathic basis.
peripheral thermoreceptors. There are two types of thermosen- Generalized hyperhydrosis can occur with various endocrine
sitive neurons, warm-sensitive and cold-sensitive, both of disorders, such as estrogen deficiency due to menopause
(related either to the climacteric medical treatment), hyperthy- ashes and night sweats in a variety of illnesses, such as
roidism, or hypoglycemia, as well as with various neuroen- Parkinsons disease. Thalidomide has been reported to
docrine tumors, such as carcinoid and pheochromocytoma. decrease TNF- production and sweating in patients with
Hyperhidrosis may also be a sign of chronic infection, such as tuberculosis, leprosy, rheumatoid arthritis, graft versus host
tuberculosis, or of inammatory illnesses (e.g., lupus, vasculi- disease, and mesothelioma (where TNF- levels were ele-
tis, regional enteritis) even in the absence of fevers. Various vated).96 There are numerous references in the professional
malignancies, most notably lymphomas, cause drenching and lay literature regarding use of evening primrose oil and
sweats, especially at night. Such night sweats may be an early phytoestrogens for menopausal symptoms. Phytoestrogens
sign of tumor recurrence. Hyperhidrosis may announce many are found in more than 300 plants (coumestans: bean sprouts,
abstinence syndromes, such as from barbiturates, opioids, or red clover, and sunower seeds; lignans: rye wheat, sesame
ethanol.1 With opioids, both agonists, such as morphine and seeds, linseed). Constituent isoavones are reportedly similar
methadone, and mixed agonistsantagonists, such as butor- in efcacy to endogenous estrogen at minimizing the symp-
phanol and pentazocine, have been associated with excessive toms of menopause (hot ashes) and premenstrual syndrome.
sweating, probably due to cutaneous vasodilatation. An opioid A recent study evaluating soy phytoestrogens for treatment of
rotation may be benecial in reducing this symptom.1 hot ashes in breast cancer survivors concluded the soy prod-
It is important to evaluate all reported regional distur- uct did not alleviate hot ashes.99 Black cohosh (Cimicifuga
bances of sweating. Patients with an area of anhidrosis (e.g., racemosa) is a perennial herb that has emerged as a treatment
related to a Pancoast tumor as a component of Horners syn- for hot ashes, but there is no good evidence from controlled
drome) may not notice a decrease in sweating on the affected trials to support its use.102,103
area but, instead, report hyperhidrosis on the unaffected side.
Nocturnal hyperhidrosis, or night sweats, can be associated
9=
with decreased estrogen production such as from menopause,
case study
other endocrine disorders, and malignancies. Hormonal ther-
Mrs. M, a Patient with Hot Flashes
apy for breast and prostate cancers is often associated with
troublesome hot ashes, which interfere with sleep patterns. Mrs. M is a 60-year-old woman with a prior history of
Seventy-ve percent of men receiving hormonal therapy expe- oophorectomy, who was diagnosed in 1994 with breast can-
rience hot ashes, although the symptom is often overlooked. cer. Treatment included a lumpectomy, followed by a seg-
mental resection with axillary node dissection and external
Clinical Evaluation/Treatment Options radiation therapy. Since her diagnosis, she has taken tamox-
for Hot Flashes ifen 10 mg twice a day as a prophylactic measure. Hot ashes
were reported as her most distressing symptom. The patient
Hot ashes occur as a result of estrogen depletion related to described these episodes as being drenched, and they
surgery, adjuvant chemotherapy, and hormonal therapy (such impacted negatively on her quality of life. Sleep was inter-
as tamoxifen, leuprolide [Lupron], and utamide [Eulexin]). rupted due to frequent linen changes (two or three per
In the United States, estrogen replacement therapy (ERT) gen- night), and frequent changes of nightwear were required. Past
erally is not given to women with a history of breast cancer. medical history included mitral valve prolapse, type II dia-
Such women are predisposed not only to hot ashes but also betes, hypertension, hypercholesterolemia, stress inconti-
to other problems associated with estrogen deciency, such as nence (status post bladder suspension), and oophorectomy.
osteoporosis and heart disease. In the nonhormonal treatment Mrs. M is a very pleasant, well-developed, well-nourished
of hot ashes, such agents as ergotamine tartrate plus pheno- woman in no distress. Vital signs: T: 35.9C; P: 95; BP: 162/92;
barbital (Bellergal), methyldopa, and clonidine have been Wt: 84 kg. The physical examination was unremarkable
tried, but often with limited success. Other purported remedies except for the area of the right breast, where a well-healed
include moderate doses of vitamin E, certain antidepressant surgical decit was present. There was increased density in
agents such as paroxetine (Paxil), venlafaxine Hcl (Effexor),101 the tissue of the right breast. There was no erythema and no
and anticholinergic agents such as oxybutynin chloride palpable mass. There was no lymphadenopathy in the supra-
(Ditropan).100 Oxybutynin is an antispasmodic, anticholiner- clavicular region or axillae. There was no nipple discharge.
gic agent indicated for the treatment of urge incontinence and Diagnostic data included fasting blood sugar of 115. The
bladder hyperactivity disorders; it often effectively reduces impression is that the hot ashes are related to tamoxifen use.
sweating. It is now available in a sustained-release form, The patient was given a prescription for a clonidine TTS-1
which minimizes the side effects of sleepiness and dry mouth. patch, to be worn weekly, to block the symptoms of excessive
Patients living in hot climates must be cautioned against over- sympathetic outow that caused her hot ashes and sweats,
activity in the heat because diminished sweating can lead to and to treat her hypertension. The clonidine was tried for
heat stroke when taking anticholinergic agents. Adequate 1 month, but after this, the patient discontinued the patch, feel-
hydration is important to avoid confusion and hyperthermia. ing it was ineffective and reporting symptoms of orthostatic
In clinical practice, propranolol hydrochloride (Inderal) has hypotension. Hyosphen (Bellergal), which contains phenobar-
been found to decrease the sympathetic symptoms of hot bital, ergotamine, and belladonna, was prescribed, twice a day.
This agent was tried for several days, and while it had some 11. Massey EW. Unilateral neurogenic pruritus following stroke.
efcacy, the patient found its sedating properties to be unac- Stroke 1984;15:901903.
ceptable. Oxybutynin chloride (Ditropan), an anticholinergic 12. Lowitt MH, Bernhard JD. Quantitation of itch and scratch.
and antispasmodic agent, was prescribed. At the starting dose Semin Neurol 1992;12:374384.
of 5 mg bid, the patient reported that the frequency and inten- 13. Lovell CR, Burton PA, Duncan EHL, Burton JL. Prostaglandins
and pruritus. Br J Dermatol 1976;94:273.
sity of her hot ashes were considerably reduced and that her
14. Schworer H, Ramadori G. Treatment of pruritus: a new indica-
urinary urgency was also better controlled.
tion for serotonin type 3 receptor antagonists. Clin Invest
The patients quality of life reportedly improved when she 1993;71:659662.
was able to sleep through the night without experiencing the 15. Raderer M, Muller C, Scheithauer W. Ondansetron for pruritus
hot ashes or nocturia. She was able to decrease the dose of due to cholestasis. N Engl J Med 1994;330:1540.
oxybutynin to 5 mg once a day at bedtime. 16. Radossi P, Tison T, Vianello F, Dazzi F. Intractable pruritus in
o] non-Hodgkins lymphoma/CLL: rapid response to IFN . Br J
Haematol 1996;94:579583.
17. Cooper DL, Gilliam AC, Perez MI. Hyperprolactinemic galact-
orrhea in a patient with Hodgkins disease and intense pruritus.
o]
South Med J 1993;86:829830.
Conclusion
18. Apel RL, Fernandes BJ. Malignant lymphoma presenting with an
elevated serum CA-125 level. Arch Pathol Lab Med 1995;119:
Pruritus, fever, and sweats are frequently seen in end-of-life 373376.
care but are still not well managed. New pharmacological ther- 19. Krajnik, M., and Zylicz, Z. Understanding pruritus in systemic
apies have evolved in the palliation of these symptoms, and the disease. J Pain Symptom Manage 2001;21:151168.
physiological processes are better understood. Symptoms of 20. Nicol NH, Boguniewicz M. Understanding and treating atopic
pruritus, fever, and sweats should be assessed and recognized dermatitis. Nurse Pract Forum 1999;10:4855.
as causing distress to the patient and negatively impacting on 21. Malet KM. Pruritus associated with cholestasis. A review of
the patients quality of life. In the palliative care setting, treat- pathogenesis and management. Dig Dis Sci 1994;39:18.
ment of the underlying disease process may be limited but 22. Losowsky T Jr. Opioid peptides and primary biliary cirrhosis.
BMJ 1988;297:15011504.
comfort should be a priority.
23. Borgeat A, Savioz D, Mentha G, Giostra E, Suter PM. Intractable
cholestatic pruritus after liver transplantationmanagement
with propofol. Transplantation 1994;58:727730.
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18o] Judith A. Paice
Neurological Disturbances
The seizures never stopped. It was awful to witness. We will never forget how he suffered.
A mother
Key Points Myoclonus is frequently seen in palliative care settings, par-

Myoclonus, uncontrolled rhythmic jerking movements, often is due ticularly during the final days of life. If left untreated, this
to accumulation of opioid metabolites, particularly in patients with neurological disturbance may progress to seizures. Seizures
renal dysfunction. also may occur due to central nervous system (CNS) lesions,
Seizures may arise from central nervous system neoplasms, metabolic disorders, or medications. A third neurological
metabolic dysfunction, medications, stroke and other causes. disturbance, spasticity, involves involuntary movements that
Aggressive management is indicated to reduce pain and exhaustion. may produce discomfort and fatigue. Astute palliative care
Spasms, involving uncontrolled movement, rigidity, and clinicians can prevent some of these disorders and treat those
hyperreexia, can impair mobility and cause pain. Palliative care that cannot be prevented. Patient and family involvement is
includes pharmacological and nonpharmacological management, mandatory since comfort and safety issues are prevalent with
along with safety measures. all three syndromes.
o]
Myoclonus
Myoclonus consists of sudden, uncontrollable, nonrhythmic

jerking, usually of the extremities.1 Frequently seen in the
palliative care setting, myoclonus can be exhausting and can
progress to more severe neurological dysfunction, including
seizures. Early identication and rapid treatment are critical.
Causes of Myoclonus
In the palliative care setting, myoclonus is most often associated

with opioids. The prevalence of opioid-induced myoclonus
ranges greatly, from 2.7% to 87%.1 Nocturnal myoclonus is
common and often precedes opioid-induced myoclonus.2 The
precise cause of opioid-induced myoclonus is unknown; how-
ever, several mechanisms have been proposed.3,4 High doses of
opioids result in the accumulation of neuroexcitatory metabo-
lites. The best characterized are morphine-3-glucuronide and
hydromorphone-3-glucouronide.5,6 Serum and cerebrospinal
uid levels, as well as the ratios of these metabolites, are ele-
vated in patients receiving morphine for cancer and nonma-
lignant pain.7 This is particularly true for patients with renal
dysfunction.8 However, clinical evidence of myoclonus does
365
not consistently correlate with serum levels of morphine-3- is not complete, and thus, lower equianalgesic doses of an
glucuronide.9 Hyperalgesia is particularly associated with these alternate opioid may provide analgesia. Methadone has been
metabolites, although other opioids with no known metabolites successfully used as an alternative agent,7 although other opi-
have also produced myoclonus.10 A variety of other metabolites oids may be easier to titrate, and methadone also has been
of opioids exist, including morphine-6-glucuronide and reported to cause myoclonus.12 Strategies, such as adding adju-
hydromorphone-6-glucuronide, but these have been impli- vant analgesics, that reduce the necessary amount of opioid
cated in nausea and vomiting, as well as sedation, rather than could reduce or eliminate myoclonus.
myoclonus. Little research is available regarding agents used to reduce
Opioids given in high doses may result in myoclonus.3 myoclonic jerking. Benzodiazepines, including clonazepam,
Bruera and Pereira11 reported the development of acute confu- diazepam, and midazolam, have been recommended.1,22 The
sion, restlessness, myoclonus, hallucinations, and hyperalgesia antispasmodic baclofen has been used to treat myoclonus due
due to an inadvertant administration of 5000-mcg intravenous to intraspinal opioid administration.23 Dantrolene has been
(IV) fentanyl (the patient had been receiving 1000 mcg/hour used, yet it produces signicant muscle weakness and hepato-
subcutaneously). These symptoms were successfully treated toxicity.24
with several doses of 0.1 to 0.2 mg of IV naloxone, followed
by a continuous IV naloxone infusion of 0.2 mg/hour. The Patient and Family Education
patient did not demonstrate withdrawal symptoms initially,
yet began to complain of return of pain after several hours (see Safety measures are essential, as are interventions designed to
Chapter 6 regarding the use of diluted naloxone to reverse reduce fatigue during myoclonus. Use padding around bed
adverse effects associated with opioids). Other opioids, includ- rails and assistive devices if the patient is ambulatory. Provide
ing methadone,12 meperidine,13 and transdermal fentanyl14 a calm, relaxing environment. Pain assessment is critical as
have been implicated in the development of myoclonus. opioids are rotated since equianalgesic conversions are approx-
Other reported causes of myoclonus include surgery to the imations and wide variability exists. Therefore, patients and
brain,15 placement of an intrathecal catheter,16 AIDS dementia,17 family members are encouraged to track pain intensity as opi-
hypoxia,18 chlorambucil,19 and a paraneoplastic syndrome.20 This oids are titrated to provide optimal relief.
paraneoplastic syndrome is rare, occurring in fewer than 1%
of people with cancer. The etiology of the paraneoplastic
syndrome can also be viral and is believed to be immunologi- o]
cally mediated. Symptoms of this paraneoplastic (also called Seizures
opsoclonus-myoclonus) syndrome include myoclonus, opso-
clonus, ataxia, and encephalopathic features.21 Treatment of Of the many neurological disorders that occur in advanced
the underlying tumor or infection and immunosuppression disease, seizures are the most frightening. This fear exists for
are possible treatments.20,21 the patient and for their caregivers. Furthermore, seizures can
be exhausting for the patient, eliminating the few energy reserves
Assessment that might be better spent on quality activities. Therefore,
seizures must be prevented whenever possible. When preven-
An accurate history from the patient and family is essential. An tion is not feasible, all attempts should be made to limit the
analogy to help patients describe the symptoms is to com- extent of the seizure and ensure safety measures to prevent
pare the jerking to the feeling that often happens when one is trauma during these episodes.
close to falling asleep (a common condition called nocturnal Seizures occur when a large number of neurons discharge
myoclonus). The difference is that myoclonus is usually con- abnormally.25 This abnormal discharge produces involuntary
tinuous. Physical exam will reveal jerking of the extremities, paroxysmal behavioral changes. There are two types of seizure,
which is uncontrolled by movement or other activities. Jerking including primary (also called generalized) and focal (also
can be induced by single or repeated tapping of a muscle called partial). Primary seizures involve large parts of the brain
group. and include both grand mal and petit mal types. Focal seizures
are isolated to specic regions of the brain, and symptoms
Treatment reect the area of disturbance.25 For example, Jacksonian motor
seizures result from abnormal discharge in the motor cortex.
Opioid rotation is the primary treatment of myoclonus, par- These patients may have involuntary twitching of muscle
ticularly if the patient is receiving higher doses of an opioid groups, usually on the contralateral side of the body. If the
and has renal dysfunction.1 There is great variation in individ- tumor is located in the left motor cortex (anterior to the cen-
ual response to opioids, thus, different agents may have a tral sulcus), the activity is seen on the right side of the body.
greater likelihood of producing myoclonus or other adverse Often, activity begins in one area and spreads throughout that
effects. Presently, there are no tests that predict individual side of the body as abnormal discharge spreads to nearby
response, and trials are the only strategy for determining effec- cortical neurons. Patients generally remain conscious, unless
tiveness as well as adverse effects. In addition, cross-tolerance the abnormal cortical discharge spreads to the opposite
Neurological Disturbances 367
hemisphere. In the palliative care setting, there are many threshold. These agents should be used cautiously in patients
potential causes of seizure activity. with intracranial tumors or infection. There are reports of
patients developing seizures due to uoroquinolones, including
Causes of Seizures ooxacin and ifosfamide (more likely if serum creatinine is ele-
vated and the patient has had prior treatment with cisplatin), as
Careful consideration of the many causes of seizure activity well as cephalosporins and monobactams.3135 In very high
must be included in the assessment of patients at the end of life, doses, any opioid can lead to seizures. Several opioids are asso-
whether the patient has demonstrated seizure activity or not. ciated with much higher risk due to their metabolites that cause
This allows prevention whenever possible. Primary or metas- seizures. Meperidine is converted to normeperidine during
tatic neoplasms to the brain are common causes of seizures metabolism.13 Individuals with renal dysfunction cannot excrete
in palliative care, as are preexisting seizure disorders.26 Medi- normeperidine efciently; the metabolite then accumulates in
cations, including phenothiazines, butyrophenones, and tri- the bloodstream and leads to seizures. Therefore, the clinical
cyclic antidepressants, can lower the seizure threshold. Other practice guidelines developed by the American Pain Society for
medication-related causes of seizures include metabolites (e.g., cancer pain strongly discourage the use of meperidine in any
normeperidine), preservatives within these compounds (e.g., patient, a practice long known to those in palliative care.36 These
sodium bisulte), or the abrupt discontinuation of certain guidelines also discourage the use of propoxyphene (the weak
drugs (e.g., benzodiazepines).3,27 Additional causes of seizures at opioid in Darvon) in persons with cancer due to the metabolite
the end of life include metabolic disorders, infection, HIV, norpropoxyphene.36
stroke, hemorrhage, oxygen deprivation, and some rare parane- More recently, morphine and hydromorphone have been
oplastic syndromes (Table 181).26,28,29 found to be metabolized by glucuronidation to morphine-3-
glucuronide or hydromorphine-3-glucuronide, respectively.
Primary or Metastatic Brain Tumors. Brain tumors can These metabolites may produce hyperalgesia (elevated pain
result in either primary generalized or focal seizures. Seizures intensity), myoclonus (see previous section), and seizure in
occur in approximately 25% of those with brain metastases.30 patients unable to excrete these efciently.7,10 Clinically, patients
Patients with malignancies known to metastasize to the brain, respond acceptably to the opioid for the rst day or two, then
such as breast, lung, hypernephroma, and melanoma, should develop symptoms after the metabolite has accumulated.
be considered at risk for seizures. Leukemias and lymphomas Alternately, the patient may have obtained good relief in the
are also known to produce inltrates in the brain. Multiple absence of opioid neurolotoxicity, until renal status dimin-
metastases or brain and leptomeningeal disease are more com- ishes, with concomitant difculties in clearing the metabolite.
monly associated with seizures.30 The tumor location, size, and Another opioid, tramadol, has been associated with seizure risk,
histology dictate whether seizures may result and the resulting especially when taken with other drugs that lower the seizure
symptoms associated with the seizure. threshold.
Compounds added to medications to preserve the drug or
Medications. Medications can lead to seizures in the palliative prevent its breakdown (such as sodium bisulte) are normally
care setting through several mechanisms. Medications such as present in extremely small amounts. However, when high doses
the phenothiazines, butyrophenones, and tricyclic antide- of a drug, usually opioids, are needed to treat severe pain, the
pressants can place patients at risk by lowering the seizure concomitant dose of these additives increases. In this setting,
there have been rare reports of seizures.27 Using preservative-
free solutions when administering high doses of any agent
Table 181 may prevent this activity. Hagen and Swanson3 report a syn-
Causes of Seizures in Palliative Care drome of opioid hyperexcitability that progressed to seizures
in ve patients with high-dose infusions. Parenteral midazo-
Primary or metastatic neoplasm to the brain
lam infusion was used to treat the seizures, the patients were
Preexisting seizure disorder
rotated to alternative opioids (including levorphanol and
Medications methadone), and aggressive supportive care was provided dur-
Lower seizure threshold ing the episodes.
Metabolites Rapid cessation of various drugs can lead to seizure activity
Preservatives, antioxidants, or other additives in the palliative care setting. Often, this occurs when staff are
unaware that a patient uses certain medications and, as a
Abstinence
result, these drugs are not provided when patients are hospi-
Metabolic disorders
talized or unable to independently dispense their own drugs.
Infection Benzodiazepines, barbiturates, and baclofen are the most com-
Trauma mon drugs associated with seizures during abstinence.25 This
Strokes and hemorrhage also can occur when the patient abuses these compounds or
Paraneoplastic syndromes alcohol and the staff or family is unaware. Alcohol abuse often
is underrecognized in the palliative care setting.37
Other Causes of Seizures in Palliative Care. Infection within in patients who have not had a seizure is controversial. Only in
the brain, as may be seen in persons with human immunod- the case of brain metastases from melanoma has prophylactic
eficiency virus (HIV) or acquired immunodeficiency syn- anticonvulsant therapy demonstrated benet. The potential
drome (AIDS), can lead to seizure activity.17,29 The syndrome benets must be weighed against the side effects associated
of inappropriate antidiuretic hormone, associated with with these agents.
lung cancer and other malignancies, can result in increased The most common anticonvulsants used in the United
water and sodium content within the cells.38 The resultant States to prevent seizures are phenytoin, carbamazepine, val-
swelling of neuronal cells within the brain causes increased proate, and phenobarbital (see Table 182).39 Newer anticon-
intracranial pressure (ICP). Anoxia deprives the brain of vulsants, such as gabapentin, vigabatrin, and lamotrigine, have
needed nutrients, resulting in an inability to drive sodium not been extensively studied in the palliative care setting.39,40
out of neuronal tissue. Water follows into the cells, creating Agents used during a seizure include diazepam, lorazepam,
increased ICP. Hyponatremia (<130 mEq/L) can also lead to midazolam, phenytoin, and phenobarbital (Table 183).
mental status changes and seizures, especially when of rapid A particular challenge in palliative care is the administra-
onset. tion of these drugs when the patient is unable to take oral
medications. The intramuscular route can be used for some
Assessment (diazepam and phenobarbitol), but since this route is painful
and absorption is unpredictable, its use should be reserved for
Conduct a thorough history from the patient and caregiver to situations when no other access is practical or possible.
ascertain any symptoms existing with the onset of the seizure, Diazepam is available in a rectal gel. Doses are 200 mcg/kg
the specic type of seizure activity, and whether there was any body weight, rounded down to the next available unit dose
aura immediately before the seizure.25 Headache, nausea, (10-mg, 15-mg, and 20-mg unit doses for adults) in debilitated
and projectile vomiting are associated with increased ICP and patients. Phenobarbital is available in a solution for parenteral
can occur immediately before seizure activity.30 The family delivery, and pentobarbital (used more commonly in Canada
may relate a staring-type behavior, where the patient does not and Europe) is available in rectal formulations. Intravenous
respond to stimuli for a brief moment. phenytoin can lead to the purple-glove syndrome, a poten-
The past medical history might reveal a seizure disorder. tially serious local complication including edema, discol-
Review all drugs recently added to the plan of care for agents oration, and pain distal to the injection site.41,42 Fosphenytoin,
that might lower the seizure threshold or produce metabolites. although more expensive, has an advantage in palliative care
Question whether the patient recently discontinued a drug, because it can be given subcutaneously (by either intermittent
including recreational drugs. If the patient is currently taking injection or infusion) for prevention or treatment of seizures.
anticonvulsants or corticosteroids for seizures and increased Dosing is based on phenytoin equivalents, generally 5- to
ICP, determine if there could be reasons that the drugs were 10-mg phenytoin equivalent/kg. Little research has compared
not ingested or absorbed. These might include compliance the efcacy of these agents, particularly in the palliative care
issues or nausea and vomiting. setting. The choice of agent is often based on the availability of
Often, the clinician may not witness the seizure and must the drug, comfort level of the practitioner, ability to use nono-
rely on the observation and memory of family members and ral routes, and other factors. Because most medications are
caregivers. Assist family members in differentiating between administered by nonprofessional caregivers in the home, often
seizures and myoclonus (see previous section) or altered level elderly spouses of aged patients, it is best to keep the drug reg-
of consciousness due to other etiologies. A thorough examina- imen simple.
tion is indicated, with attention to bruises and other signs of Many patients with seizure disorders will also be taking
trauma. If these occur, additional teaching for family and care- dexamethasone. Dexamethasone is technically not an anticon-
givers regarding safety measures is warranted. vulsant, yet this compound is critical when intracranial lesions
Measuring serum levels of anticonvulsants may be indi- that might increase ICP are present.39 Although most texts
cated to insure that the drug is adequately absorbed.39 Dose suggest four-times-a-day (qid) dosing, the long half-life of
adjustments may be done empirically based on the patients dexamethasone allows daily dosing with adequate serum levels
condition. Electroencephalography may be used to identify maintained throughout the 24-hour period. Of additional con-
the site of abnormal discharge. Brain lesions may be scanned cern is the interaction between phenytoin and dexamethasone.
using computed tomography (CT) or magnetic resonance imag- Phenytoin can decrease the bioavailability of dexamethasone
ing (MRI). These tests should only be considered if they will by as much as 20%. Additionally, dexamethasone inhibits the
provide information that will guide therapy and if they are metabolism of phenytoin, reducing the anticonvulsant effect
consistent with the patients and familys goals of care. of this drug. Thus, extreme care must be exercised when adding
or titrating either drug when using combinations. Phenytoin
Treatment can alter plasma levels of several drugs (Table 184). In the pal-
liative care setting, if a patient decides to stop all corticos-
Anticonvulsants are used when patients have demonstrated teroids, the professional must evaluate the likelihood of
seizures (Table 182). The prophylactic use of anticonvulsants developing seizures. Prophylactic therapy must be considered.
Table 182
Prophylactic Pharmacological Management of Seizures
Drug Adult Dose Adverse Effects Comments
Phenytoin Loading dose: 5mg/kg PO q3h Nystagmus, ataxia, slurred Usual serum level
(Dilantin) 3 doses (loading dose not to be speech, mental confusion, 1020mcg/mL
Tablets used in patients with renal or Stevens-Johnson syndrome (or 1020mg/L
Capsules hepatic disease) Too rapid IV injection or 4080mol/L)
Suspension Maintenance: 5mg/kg PO (>50mg/min) can result
Parenteral in cardiac toxicity
Carbamazepine 400mg/day: Aplastic anemia, agranulocytosis Periodic blood counts and liver
(Tegretol) Patients with known sensitivity function tests indicated
Tablets Tablet: 200mg bid to tricyclic antidepressants may Therapeutic plasma levels 412
Suspension Suspension: 1 teaspoon qid be hypersensitive to carbamazepine. mcg/mL
Maximum dose: 1600mg/24 h
Valproic acid 15mg/kg daily, increasing weekly in Hepatic failure, coagulopathies, Therapeutic plasma levels
(Depakene) 510mg increments nausea, vomiting, sedation 50100mcg/mL
Capsules Syrup can be given rectally by a red
Syrup rubber catheter 250500mg tid.
Divalproex sodium Same dosing for valproic acid and Chewing may produce irritation
(Depakote) divalproex, although peaks and troughs of the mouth and throat.
Capsules may differ
Sprinkles
Tablets
Phenobarbital Oral: 60200mg/day Sedation, paradoxical excitation
Tablets Parenteral: 34mg/kg q24h
Elixir continuous SQ infusion
Parenteral
Midazolam 13mg/h continuous SQ or IV Sedation, respiratory depression Antagonist, umazenil, can
(Versed) Infusion if overdose result in seizures.
Parenteral Use same extreme
caution as when giving
naloxone for suspected
opioid overdose.
SQ = subcutaneous; IV = intravenous.
Table 183
Acute Treatment of Seizures
Drug Dose
Diazepam (Valium) 510mg slow IV push (stop other infusions to prevent

incompatibility problems) or 510mg IM every 510min if no
IV access, can also use diazepam (Diastat) rectal gel, usually
10mg per rectum
Fosphenytoin (Cerebyx) 1520mg phenytoin equivalents/kg IV loading dose
Lorazepam (Ativan) 1mg/min up to 5mg
Midazolam (Versed) 0.020.10mg/kg continuous hourly infusion
Phenobarbital 20mg/kg IV at a rate of 100mg/min
Phenytoin (Dilantin) Acute treatment: 20mg/kg IV infusion over 2030 min.
An additional 510mg/kg can be given if seizures persist. However,
IV injections can cause severe local reactions, including edema,
pain, and discoloration.
Table 184
Drugs that Interact with Phenytoin
Drugs that may increase phenytoin serum levels

Alcohol, amiodarone, choramphenicol, chlordiazepoxide, diazepam, dicumarol, disulram,
estrongens, H2 antagonists, halothane, isoniazide, methylphenidate, phenothiazines,
phenylbutazone, salicylates, succinimides, sulfonamides, tolbutamide, trazodone
Drugs that may decrease phenytoin serum levels
Carbamazepine, chronic alcohol abuse, reserpine, sucralfate, antacids with calcium (should
not be taken with phenytoin but at a different time)
Drugs that may have reduced efcacy due to phenytoin
Corticosteroids (including dexamethasone), coumarin anticoagulants, digitoxin, doxycycline,
estrogens, furosemide, oral contraceptives, quinidine, rifampin, theophylline, vitamin D
Status epilepticus is a seizure that persists longer than them to assist the patient while being considerate of the
5 minutes or repeated seizures without a return to conscious- patients ability and dignity.
ness between each episode.43 This is considered a neuro- To help recovery after a seizure, the patient may benet from
oncological emergency. Clear the airway, ensure adequate reduced stimulation. Lower the lights, reduce the sound of tele-
perfusion, give glucose (usually 50 mL of a 50% solution), visions or radios, and speak softly and reassuringly. Assess for
evaluate electrolytes, and administer IV benzodiazepine (such pain and treat accordingly. Relaxation exercises also may be help-
as diazepam or lorazepam), followed by a loading dose of ful. Often, patients will sleep for several hours after the seizure.
IV phenytoin. The Veterans Administration Cooperative Trial
of Status Epilepticus revealed response rates during rst-line
9=
treatment as follows: lorazepam 64.9%, phenobarbitol 58.2%,
case study
diazepam plus phenytoin 55.8%, and phenytoin alone 43.6%.44
A 31-Year-Old Man with Intractable
These results suggest that lorazepam should be the rst drug
Nausea and Vomiting
of choice. If the seizure is not relieved in 5 to 7 minutes, add
phenytoin or fosphenytoin. If recurrent, continuous infusion A 31-year-old man was admitted to the oncology unit with
of phenobarbital or diazepam is indicated. In extreme cases, intractable nausea and vomiting, presumably due to appen-
barbiturate anesthesia, neuromuscular blockade, and propofol diceal cancer with omental and peritoneal metastases. He
may be indicated.45 previously had been treated with a right hemicolectomy and
diverting ileostomy, systemic chemotherapy, and a venting
Patient and Family Education gastrostomy tube with total parenteral nutrition when
obstruction occurred. Abdominal pain was treated with IV
Witnessing a seizure can be extremely frightening for family hydromorphone 26 mg/hour, with 26 mg every 15 minutes as
members and caregivers. Preparation is critical. Explain that needed. Several hours after admission to the unit he devel-
restraining the patient or attempting to place objects in the oped myoclonus, hyperreexia, agitation, delirium, and even-
mouth can lead to signicant harm. Educate family members tually, tonicclonic seizures. Evaluation revealed acute
to move items that might cause trauma out of the way and to obstructive renal failure (BUN 37 mg/dL, creatinine
get the patient to lay on one side if possible. Caregivers may be 4.2 mg/dL) secondary to diffuse carcinomatosis.
given information regarding the jaw-lift technique if the air- Because the opioid metabolite hydromorphone-3-
way is compromised. Pillows placed around the bed, between glucuronide was suspected as the likely cause of these neu-
the patient and the siderails (if a hospital-style bed is in use), rological disturbances, the hydromorphone dose was
and around the room can be quickly positioned to prevent reduced by 50% and the bolus dose was discontinued.
trauma. Caution family members to refrain from feeding or Phenytoin (Dilantin) 1 gram followed by a 200-mg IV bolus
providing uids until the patient is fully alert and able to swal- every 12 hours did not stop the seizures; neither did
low. However, if the patient has grossly unstable blood sugar valproate sodium (Depakon) 500-mg IV infusion every
levels and is prone to developing hypoglycemia, candy, glu- 12 hours, chlorpromazine (Thorazine) 25-mg slow IV push
cose, juice, or other sources of glucose can be given only if the every 6 hours, lorazepam 2-mg IV every 2 hours, or
patient is able to swallow. Glucagon can also be given subcuta- diazepam 5 mg every 5 to 10 minutes. Despite these efforts,
neously. Inform family members that loss of continence is the generalized tonic-clonic movements increased in inten-
common during a seizure and does not imply that the patient sity and frequency (every 8 to 10 minutes) to status epilepti-
is not able to control these functions at other times. Encourage cus. The patient was disoriented, yet remained arousable,
able to follow simple commands, and appeared to be in pain the benets of intrathecal baclofen therapy given the patients
during these seizures. prognosis, the availability of skilled clinicians to administer
Because the familys goals were to keep the patient com- the therapy, cost, and other factors.
fortable, a midazolam infusion was begun at 1 mg/hour and Muscle relaxants, such as dantrolene 50 to 100 mg/day,
rapidly titrated upward to 96 mg/hour, without change in fre- diminish the force of the contraction.47 Start at 25 mg daily and
quency or intensity of seizures unfortunately. A nationwide increase by 25-mg increments in divided doses every 4 to
shortage of phenobarbital prompted the use of pentobarbital 7 days. The contents can be mixed with liquids if the patient is
1 gram over 1 hour, followed with a 40-mg/hour infusion, unable to swallow capsules. Although this reduces spasticity,
with no change in seizure activity. A propofol (Diprivan) signicant impairment in muscle strength can occur. There-
infusion was started, with a bolus of 80 mg given over 1 hour, fore, dantrolene is not recommended in ambulatory patients.
and an infusion of 160 mg/hour. The patient experienced Furthermore, dantrolene can cause hepatotoxicity. Marijuana,
three more seizures, and then they stopped; he died and its active ingredient delta-9-tetrahydrocannabinol (THC),
approximately 6 hours later in apparent comfort.45 has been described by patients as useful in the relief of spinal
o] cord spasticity.52 Although not approved for this purpose,
there is general agreement within the medical community that
the treatment of spasticity is a legitimate use of THC. How-
o] ever, despite data supporting its safety and the availability of
Spasticity a commercially prepared product (Marinol), some patients,
family members, and health care professionals continue to feel
Spasticity is a movement disorder that results in a partial or uneasy regarding the use of this compound.
complete loss of supraspinal control of spinal cord function.
Patients may exhibit involuntary movement, abnormal pos- Patient and Family Education
ture, rigidity, and exaggerated reexes. Spasticity may interfere
with all aspects of life by limiting mobility, disturbing sleep, Patients and their caregivers should be educated about factors
and causing pain.46 Spasticity is often associated with advanced that may worsen spasticity, including constipation, urinary
multiple sclerosis (MS), spinal cord trauma, tumors of the tract infection, pressure ulcers, fatigue, and psychosocial con-
spinal cord, stroke meningitis, and other infections.4749 In a cerns. Strategies to prevent and relieve these conditions should
study of 2104 patients with nontraumatic spasticity seen in a be clearly communicated, and early communication regarding
regional neuroscience center in the United Kingdom, 17.8% their onset should be encouraged. When spasticity occurs, the
had MS, 16.4% had neoplasm, and 4.1% had motor neuron patient and family members must understand the rationale for
disease.50 drug therapy. Nonpharmacological therapy also may be help-
ful. Family members may be encouraged to gently massage
Assessment the affected extremities, although this may produce increased
spasticity in some patients. Repositioning, heat, and range-of-
Patients will describe a gradual onset of loss of muscle tone, motion exercises have been described by patients as being
followed by resistance and jerking when muscles are flexed. A helpful. As with other neurological disorders, safety measures
recent history of urinary tract infection, decubitus ulcer, are imperative. Padding wheelchairs, bed rails, and any other
constipation, or pain may immediately predate the onset, or furniture that might come in contact with spastic extremities
increased episodes, of spasticity. will reduce trauma.
Physical exam will yield resistance and spasticity when doing
passive limb movement. The faster the passive movement, the
more pronounced the effect. Reexes may be hyperactive, par- o]
ticularly in the affected area. Bruises are common as patients Conclusion
inadvertently and uncontrollably move their limbs, resulting in
trauma. Neurological disorders, including myoclonus, seizures, and
spasticity, create fear, reduce energy levels, increase pain, and
Management can complicate the course of a patients illness. The goal in pal-
liative care is prevention whenever possible. When not possible,
The standard therapies for reducing spasticity include oral early diagnosis and treatment are critical. Knowledge of phar-
baclofen, a gamma-aminobutyric acid-B agonist. Baclofen is macotherapy is essential, including agents that might precipitate
generally started with lower doses, 5 to 10 mg/day, and titrated these disorders, drugs that are used to treat these syndromes,
upward gradually, using three- or four-times-a-day dosing. and drug interactions that might occur in the palliative care set-
Although effective for some patients, higher doses are often ting. As with all aspects of palliative care, the patient and family
necessary, frequently resulting in cognitive changes and dizzi- are the center of care. Nurses skilled in palliative care can
ness. For this reason, intrathecal baclofen has been adminis- empower them through education and support. The interdisci-
tered with good results.51 Those in palliative care must weigh plinary approach exemplied by palliative care is key.
19. Wyllie AR, Bayliff CD, Kovacs MJ. Myoclonus due to chloram-
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19o] Jeannie V. Pasacreta, Pamela A. Minarik, and Leslie Nield-Anderson
Anxiety and Depression

I am not complete because my body does not function now. Before I was almost a normal person.
Everything functioned even though I had pain for many years. Im impotent nowI cant do what
I want to. Yesterday my grandchild fell on a broom. I felt so bad I couldnt run to save her. I feel so
inadequate in this world. This dependency is driving me crazy.A patient
Key Points This chapter provides information regarding the assessment

The psychosocial issues in persons facing life-threatening illness are and treatment of anxiety and depression among individuals who
inuenced by individual, sociocultural, medical, and family factors. are faced with chronic or life-threatening illness and delineates
Emotional turmoil may occur at times of transition in the psychosocial interventions that are effective at minimizing
disease course. these troubling symptoms. Practical guidelines regarding patient
Anxiety and depression are common symptoms in individuals management and identifying patients who may require formal
facing chronic or life-threatening illness but should not be regarded psychiatric consultation are offered.
as an inevitable consequence of advanced disease.
These symptoms warrant evaluation and appropriate use of
9=
pharmacological and psychosocial interventions.
case study
Mrs. Brady, a Patient with Depression
Mrs. Brady, a 42-year-old housewife and mother of two
small children, was referred for consultation following seg-
mental resection for probable stage IV breast cancer, with
15 positive nodes and one small area of questionable bone
metastasis noted on her left hip. On being told that she
required chemotherapy, she refused, saying It is hopeless
why bother? Both her husband and oncologist persuaded
her to discuss her decision with a psychiatric consultation-
liaison nurse, and she reluctantly agreed. She was depressed
and withdrawn, although moderately anxious. She wrung
her hands throughout the interview, reporting intrusive
thoughts of death that kept her from sleeping at night, and
stated that she preferred that her children remembered her
as she was. An early death would be preferable to the linger-
ing debilitation she believed would be associated with
chemotherapy. On further review, she described being 13
years old when her mother was diagnosed with breast cancer
and that she had always feared that it would happen to her
too. Her mothers mastectomy had been followed by painful
bone metastasis despite chemotherapy. Mrs. Brady had dis-
tressing memories of her mothers suffering and had taken
lengthy steps with her physicians to assure that mammo-
grams and frequent breast exams would allow her to be diag-
nosed early should breast cancer develop. Several areas of
calcication had been monitored for more than a year. She
375
now had anger toward her physician that her life was need- access, quality, and efciency of care. In health care settings,
lessly compromised by late diagnosis of something she had physical problems assume priority in the growing competi-
attempted to avoid for so long. The anger and hopelessness tion for scarce resources. Clinicians confronted with ambigu-
together were overwhelming, and she could not focus on ous symptoms are likely to interpret them within diagnostic
anything else. paradigms most consistent to their specialty and theoretical
o] orientation. As a consequence, the psychological symptoms
that accompany life-threatening conditions are often inter-
preted and treated inappropriately, rendering care that is not
o] comprehensive or cost effective.
Changes in Health Care that have Accentuated We are at a critical juncture in the evolution of health care
Psychiatric Symptoms in this country. Systems are being overwhelmed by serious,
often preventable, diseases that are not being treated compre-
Changes in health care delivery and rapid scientic gains are hensively after diagnosis. Furthermore, in spite of cutting-
simultaneously increasing the number of individuals receiving edge therapies, a signicant number of individuals experience
or in need of palliative care at any given time, the longevity unfavorable outcomes. As budget constraints limit the use of
and course of chronic diseases, and the prevalence and in- psychiatric specialists, these issues have intensied, and the
tensity of the psychological symptoms that accompany importance of educating front line health providers to
them.1,2 Furthermore, psychological distress is experienced recognize and address psychiatric morbidity is clear and com-
within an increasingly complex, fragmented, and impersonal pelling. In a health care system focused largely on pathogene-
health care system that intensies symptoms. Despite these sis, cure, and cost, psychological symptoms are all too often
realities, psychological symptoms receive minimal attention, unrecognized and untreated in clinical settings, despite their
and health care providers often lack the education and sup- insidious harm to patients, caregivers, and the health profes-
port regarding assessment, treatment, and referral of these sionals who feel ill prepared to manage them. As psychiatric-
common problems. consultation liaison nurses who work primarily in non-
Advances in science and technology have moved the crisis psychiatric settings, the authors have been consistently
of a life-threatening medical diagnosis to the prediagnostic impressed by the lack of knowledge of nursing and medical
period, extending life expectancy and the number of treat- staff regarding key signs and symptoms that characterize
ment courses delivered over a lifetime. Individuals are being depression and anxiety in the medically ill. Often, young
diagnosed earlier and living longer, with increasing opportu- patients with particularly poor prognoses, who elicit anxiety
nities to experience simultaneous, interrelated psychosocial and sadness from staff, rather than their objectively depressed
and medical comorbidity. The human genome project has the- or anxious counterparts, are referred for psychiatric evalua-
oretically and, in some cases, practically moved the psychoso- tion. Among depressed and/or anxious patients who are
cial implications of chronic disease into the prediagnostic referred for evaluation, the decision to intervene with psy-
period. Concurrent treatment discoveries have increased chotherapy or pharmacological agents is often based largely
quantity of life, albeit with ill-dened consequences to quality on the philosophy, educational background, and past experi-
of life.2,3 For example, an individual who learns of an inherited ence of individual clinicians. Often, a diagnosis of clinical
predisposition to cancer at age 25 is diagnosed at age 50, and anxiety or depression is ruled out if the symptoms seem reac-
receives intermittent treatment until death at age 79 incurs tive and appropriate to the situation or are viewed as organic
innumerable insults to her mental health and psychological in nature. Patients who exhibit depressive or anxious symp-
well-being. toms not considered severe enough to classify for psychi-
Soaring medical costs, managed-care arrangements, and atric status are often not offered psychotherapeutic services,
the stigma associated with mental illness have simultaneously and the natural history of their symptoms is rarely monitored
placed a low priority on the recognition and treatment of psy- over time. The lack of attention to assessment and treatment
chosocial distress within our health care system. There is of depression and anxiety among the medically ill may lead
abundant documentation that psychiatric morbidity, particu- to ongoing dysphoria, family conict, noncompliance with
larly depression, and anxiety enhance vulnerability and create treatment, increased length of hospitalization, persistent
formidable barriers to integrated health care.3 Psychological worry, and suicidal ideation, to name just a few risks. Because
factors have long been implicated as barriers to disease pre- depression and anxiety are common among individuals with
vention, early diagnosis, and comprehensive treatment.3,4 chronic illness, and particularly because they are often respon-
Lack of assessment and treatment of the common psychiatric sive to treatment, recognition of those aficted is of unques-
sequelae to chronic disease have been linked to such problems tionable clinical relevance. Patients, family, and professional
as treatment-resistant depression and anxiety, family dys- caregivers need to be informed of the factors that affect
function, lack of compliance with prevention and treatment psychological adjustment, the wide range of psychological
recommendations, potentiation of physical symptoms, and responses that accompany chronic and progressive disease,
suicide, to name just a few.36 These issues create long-term and the efcacy of various modes of intervention at minimiz-
problems that drive up health care expenses and diminish ing psychological distress and thus promoting adaptation.
Anxiety and Depression 377
o] demonstrate heightened distress, particularly if the relative

The Clinical Course of Chronic Illness died or had negative treatment experiences. During the diag-
nostic period, patients may search for explanations or causes
Acute stress is a common response to the diagnosis of a life- for their disease and may struggle to give personal meaning to
threatening chronic illness that occurs at transitional points in their experience. Since many clinicians are guarded about dis-
the disease process (beginning treatment, recurrence, treatment closing information until a rm diagnosis is established,
failure, disease progression).7 The response is characterized by patients may develop highly personal explanations that can be
shock, disbelief, anxiety, depression, sleep and appetite distur- inaccurate and provoke intensely negative emotions. Ongoing
bance, and difculty performing activities of daily living. involvement and accurate information will minimize uncer-
Under favorable circumstances, these psychological symptoms tainty and the development of maladaptive coping strategies
should resolve within a short period.7,8 The time period is vari- based on erroneous beliefs. While the literature substantiates
able, but the general consensus is that once the crisis has passed the devastating emotional impact of a life-threatening chronic
and individuals know what to expect in terms of a treatment illness, it also well documents that many individuals cope
plan, psychological symptoms diminish.7,9 The stage of disease effectively. Positive coping strategies, such as taking action and
at the time of diagnosis and its clinical course, including med- nding favorable characteristics in the situation, have been
ical treatments, recurrence, and prominent symptoms, impact reported to be effective.14 Contrary to the beliefs of many cli-
the psychosocial proles of individuals. To a large extent, these nicians, denial also has been found to assist patients in coping
factors will determine the emotional issues that are most press- effectively,15 unless sustained and used excessively to a point
ing at any given point. Patients who are diagnosed with late- that it interferes with appropriate treatment. Health care prac-
stage disease or have aggressive illnesses with no hope for cure titioners play an important role in monitoring and supporting
are often most vulnerable to psychological distress, particularly psychosocial adjustment. With an awareness of the unique
anxiety, depression, family problems, and physical discomfort. meaning the individual associates with the diagnosis, it is vital
that practitioners keep patients informed and involved in their
Diagnostic Phase care. Even though patients may not be offered hope for cure,
assisting them in maintaining comfort and control promotes
The period from time of diagnosis through initiation of a adaptation and improved quality of life.
treatment plan is characterized by medical evaluation, the
development of new relationships with unfamiliar medical Recurrence and Progressive Disease
personnel, and the need to integrate a barrage of information
that, at best, is frightening and confusing. Patients and families Development of a recurrence after a disease-free interval can
experience heightened responsibility, concern, and isolation be especially devastating for patients and those close to them.
during this period. They are particularly anxious and fearful The point of recurrence often signals a shift into a period of
when receiving initial information regarding diagnosis and disease progression and is clearly a time when palliative care
treatment. Consequently, care should be taken by profession- services aimed at alleviating psychological symptoms are
als to repeat information over several sessions and to inquire indicated. The medical workup is often difcult and anxiety-
about patients and families understanding of facts and provoking;16 psychosocial problems experienced at the time of
options. Weissman and colleagues described the first 100 diagnosis frequently resurface, often with greater intensity.17,18
days following a cancer diagnosis as the period of existential Shock and depression often accompany relapse and require
plight.8 Psychological distress varied according to patient individuals and their families to reevaluate the future. This
diagnosis. Individuals with lung cancer who had predomi- period is a difcult one, during which patients may also expe-
nantly late-stage disease were more distressed than individuals rience pessimism, renewed preoccupation with death and
with early-stage disease, supporting the need for palliative care dying, and feelings of helplessness and disenchantment with
services directed toward psychological symptoms. During the the medical system. Patients tend to be more guarded and cau-
diagnostic period, patient concerns focus on existential issues tious at this time and feel as if they are in limbo.18 Silverfarb
of life and death more than on concerns related to health, and colleagues18 examined emotional distress in a cross-sectional
work, nances, religion, self, or relationships with family and study of 146 women with breast cancer at three points in the
friends. While it is unusual to observe extreme and sustained clinical course (diagnosis, recurrence, stage-of-disease pro-
emotional reactions as the rst response to diagnosis, it is gression). The point of recurrence was found to be the most
important to assess the nature of early reactions because they distressing time, with an increase in depression, anxiety, and
are often predictive of later adaptation.10,11 Early assessment suicidal ideation. As a disease progresses, the person often
by clinicians can help to identify individuals at risk for later reports an upsetting scenario that includes frequent pain, dis-
adjustment problems or psychiatric disorders and are in the ability, increased dependence on others, and diminished func-
greatest need of ongoing psychosocial support.7,12 The initial tional ability, which often potentiates psychological symptoms.19
response to diagnosis may be profoundly inuenced by a per- Investigators studying quality of life in cancer patients have
sons prior association with a particular disease.13 Those demonstrated a clear relationship between an individuals per-
with memories of close relatives with the same illness often ception of quality of life and the presence of discomfort.20 As
uncomfortable symptoms increase, perceived quality of life systems inuence patients expectations about quality of life
diminishes. Thus, an important goal in the psychosocial treat- and palliative care. Cultural afliation has a signicant inu-
ment of patients with advanced chronic illness focuses on ence on perception of pain; for example, the ndings of Bates
symptom control. and colleagues24 indicate that the best predictors of pain inten-
An issue that repeatedly surfaces among patients, family sity are ethnic group afliation and locus of control style. For
members, and professional care providers deals with the use of example, an individuals stoic attitude, which serves to mini-
aggressive treatment protocols in the presence of progressive mize or negate discomfort, may be related to a cultural value
disease. Often, patients and families request to participate in learned and reinforced through years of family experiences.
experimental protocols even when there is little likelihood of Similarly, an individuals highly emotional response to routine
extending survival. Controversy continues about the efcacy events may become exaggerated during the terminal phase of
of such therapies and the role health professionals can play in illness and not necessarily signal maladjustment but, rather, a
facilitating patients choices about participating. These issues cultural norm. Awareness of the family systems cultural, reli-
become even more important because changes in the health gious, ethnic, and socioeconomic background is important to
care system may limit payment for costly and highly technical the understanding of their beliefs, attitudes, practices, and
treatments, such as bone marrow transplants. It is essential for behaviors related to illness and death. Cultural patterns play a
health care professionals to establish structured dialogue with signicant role in determining how individuals and families
patients, family members, and care providers regarding treat- cope with illness and death.25,26 Delirium, depression, suicidal
ment goals and expectations. Despite the existence of progres- ideation, and severe anxiety are among the most common psy-
sive illness, certain individuals may respond to investigational chiatric complications encountered in terminally ill cancer
treatment with increased hope. Efforts to separate and clarify patients.27 When severe, these problems require urgent and
values, thoughts, and emotional reactions of care providers, aggressive assessment and treatment by psychiatric personnel,
patients, and families to these delicate issues is important if who can initiate pharmacological and psychotherapeutic
individualized care with attention to psychological symp- treatment strategies. Psychiatric emergencies require the same
toms is to be provided. Use of resources such as psychiatric rapid intervention as distressing physical symptoms and med-
consultation-liaison nurses, psychiatrists, social workers, and ical crises. In spite of the seemingly overwhelming nature of
chaplains can be invaluable in assisting patients, family mem- psychosocial responses along the chronic illness trajectory,
bers, and staff to grapple with these issues in a meaningful and most patients do indeed cope effectively. Periods of intense
productive manner. emotions, such as anxiety and depression, are not necessarily
the same as maladaptive coping.
Terminal Disease and Dying
Once the terminal period has begun, it is usually not the fact of o]
dying but the quality of dying that seems to be the over- Factors That Affect Psychological Adjustment
whelming issue confronting the patient and family.21,22 Con-
tinued palliative care into the terminal stage of cancer relieves Psychological responses to chronic illness vary widely and are
physical and psychological symptoms, promotes comfort, and inuenced by many individual factors. A review of the litera-
increases well-being. Often, patients and families who have ture points to key factors that may impact psychological
received such services along the illness trajectory will be more adjustment and the occurrence and expression of anxiety and
open and accepting of palliative efforts in the nal stage of life. depression. Three of the most important factors are previous
In addition, it is important that nurses caring for the termi- coping strategies and emotional stability, social support, and
nally ill recognize the emotional impact on themselves and symptom distress. In addition, there are common medical
attend to self-care. Patients living in the nal phase of any conditions, treatments, and substances that may cause or
advanced chronic illness experience fears and anxiety related intensify symptoms of anxiety and depression (Table 191,
to uncertain future events, such as unrelieved pain, separation Table 192).
from loved ones, burden on family, and loss of control. Psy-
chological maladjustment is more likely in persons confronting Previous Coping Strategies and Emotional Stability
diminished life span, physical debilitation associated with
functional limitation, and/or symptoms associated with toxic One of the most important predictors of psychological adjust-
therapies for which there are no effective interventions.20,23 ment to chronic illness is the emotional stability and coping
Therapeutic interventions should be directed toward increasing strategies used by the person prior to diagnosis.28 Individuals
patients sense of control and self-efcacy within the context of with a history of poor psychological adjustment and of clini-
functional decline and increased dependence. In addition, if cally signicant anxiety or depression are at highest risk for
patients so desire, it is often therapeutic to let them know that emotional decompensation29 and should be monitored closely
there is help available to discuss the existential concerns that throughout all phases of treatment. This is particularly true
often accompany terminal illness. Personal values and beliefs, for people with a history of major psychiatric syndromes
socioeconomic and cultural background, and religious belief and/or psychiatric hospitalization.30
Table 191
Common Medical Conditions Associated with Anxiety and Depression
Anxiety Depression
Endocrine disorders: hyperthyroidism and hypothyroidism, Cardiovascular: cardiovascular disease, congestive heart
hyperglycemia and hypoglycemia, Cushings disease, failure, myocardial infarct, cardiac arrhythmias
carcinoid syndrome, pheochromocytoma Central nervous system: cerebrovascular accident, cerebral
Cardiovascular conditions: myocardial infarction, anoxia, Huntingtons disease, subdural hematoma,
paroxysmal atrial tachycardia, angina pectoris, Alzheimers disease, human immunodeciency virus (HIV)
congestive heart failure, mitral valve prolapse, hypovolemia infection, dementia, carotid stenosis, temporal
Metabolic conditions: hyperkalemia, hypertemia, lobe epilepsy, multiple sclerosis, postconcussion syndrome,
hypoglycemia, hyperthermia, anemia, hyponatremia myasthenia gravis, narcolepsy, subarachnoid hemorrhage
Respiratory conditions: asthma, chronic obstructive Autoimmune: rheumatoid arthritis, polyarteritis
pulmonary disease, pneumonia, pulmonary nodosa
edema, pulmonary embolus, respiratory dependence, Endocrine: hyperparathyroidism, hypothyroidism, diabetes
hypoxia mellitus, Cushings disease, Addisons disease
Neoplasms: islet cell adenomas, pheochromocytoma Other: alcoholism, anemia, systemic lupus erythematosus,
Neurological conditions: akathisia, encephalopathy, seizure Epstein-Barr virus, hepatitis, malignancies, pulmonary
disorder, vertigo, mass lesion, postconcussion syndrome insufciency, pancreatic or liver disease, syphilis,
encephalitis, malnutrition
Sources: Stoudemire (1996), reference 77; Fernandez et al. (1995), reference 45; Kurlowicz (1994), reference 98; Wise & Taylor (1990), reference 19.
Table 192
Common Medications and Substances Associated with Anxiety and Depression
Anxiety Depression
Alcohol and nicotine withdrawal Antihypertensives

Stimulants including caffeine Analgesics
Thyroid replacement Antiparkinsonian agents
Neuroleptics Hypoglycemic agents
Corticosteroids Steroids
Sedativehypnotic withdrawal or paradoxical reaction Chemotherapeutic agents
Bronchodilators and decongestants Estrogen and progesterone
Cocaine Antimicrobials
Epinephrine l-dopa
Benzodiazepines and their withdrawal Benzodiazepines
Digitalis toxicity Barbiturates
Cannabis Alcohol
Antihypertensives Phenothiazines
Antihistamines Amphetamines
Antiparkinsonian medications Lithium carbonate
Oral contraceptives Heavy metals
Anticholinergics Cimetidine
Anesthetics and analgesics
Toxins
Sources: Stoudemire (1996), reference 77; Fernandez et al. (1995), reference 45; Kurlowicz (1994), reference 98;
Wise & Taylor (1990), reference 19.
Social Support the progression of an illness. Symptoms following stressful

events (employment difculties, retirement, death of a family
Social support consistently has been found to influence a member, loss of a job, diagnosis of a medical illness/life-
persons psychosocial adjustment to chronic illness.31 The abil- threatening illness) in a persons life are expected to dissipate
ity and availability of signicant others in dealing with diag- as an individual copes, with reassurance and validation from
nosis and treatment can signicantly affect the patients view family and friends, and adapts to the situation. When
of him- or herself and potentially the patients survival.32 Indi- responses predominantly include excessive nervousness,
viduals diagnosed with all types of life-threatening chronic worry, and fear, diagnosis of an adjustment disorder with
disorders experience a heightened need for interpersonal anxiety is applied. If an individual responds with tearfulness
support. Individuals who are able to maintain close connec- and feelings of hopelessness, he or she is characterized as
tions with family and friends during the course of illness are experiencing an adjustment disorder with depressed mood.
more likely to cope effectively with the disease than those who An adjustment disorder with mixed anxiety and depressed
are not able to maintain such relationships.33 This is especially mood is characterized by a combination of both anxiety and
true during the palliative care period. depression.41
Referrals from primary care providers for psychiatric
Symptom Distress assistance with psychopharmacological treatment are indi-
cated when symptoms continue, intensify, or disrupt an indi-
The effects of treatment for a variety of chronic diseases as well viduals life beyond a 6-month period, or when symptoms do
as the impact of progressive illness can inict transient and/or not respond to conventional reassurance and validation by
permanent physical changes, physical symptom distress, and the primary care provider and support from an individuals
functional impairments in patients. It is a well-known clinical social network. Most patients develop transient psychological
fact supported by research34 that excessive psychological dis- symptoms that are responsive to support, reassurance, and
tress can exacerbate the side effects of cancer-treatment agents. information about what to expect regarding a disease course
Conversely, treatment side effects can have a dramatic impact and its treatment. There are some individuals, however, who
on the psychological proles of patients.35 The potential for require more aggressive psychotherapeutic intervention, such
psychological distress, particularly anxiety and depression, as pharmacotherapy and ongoing psychotherapy. Following
appears to increase in patients with advanced illness,3639 espe- are guidelines to help clinicians identify patients who exhibit
cially when cure is not viable and palliation of symptoms is the behavior that suggests the presence of a psychiatric syn-
issue. In a study that elicited information from oncology drome.
nurses regarding psychiatric symptoms present in their patients, If the patients problems become so severe that supportive
almost twice as many patients with metastatic disease were measures are insufcient to control emotional distress, referral
reported to be depressed in contrast to those with localized can- to a psychiatric clinician is indicated. Factors that may predict
cers.40 Investigators studying quality of life in cancer patients major psychiatric problems along the chronic illness trajectory
have demonstrated a clear relationship between an individuals include past psychiatric hospitalization; history of signicant
perception of quality of life and the presence of discomfort.20 depression, manic-depressive illness, schizophrenia, organic
As uncomfortable symptoms increase, perceived quality of life mental conditions, or personality disorders; lack of social sup-
diminishes and psychiatric symptoms often worsen. The pres- port; inadequate control of physical discomfort; history of or
ence of increased physical discomfort combined with a lack of current alcohol and/or drug abuse; and currently prescribed
control and predictability regarding the occurrence of symp- psychotropic medication. The need for psychiatric referral
toms often amplies anxiety, depression, and organic mental among patients receiving psychotropic medication deserves
symptoms in patients with advanced disease. specic mention because it is often overlooked in clinical
practice. Standard therapies used to treat major chronic dis-
eases, such as surgery and chemotherapy, and/or disease pro-
o] gression itself can signicantly change dosage requirements
Differentiating Psychiatric Complications for medications used to treat major psychiatric syndromes
from Expected Psychological Responses such as anxiety, depression, and bipolar disorder. For example,
dosage requirements for lithium carbonate, commonly used
Differentiating between symptoms related to a medical illness to treat the manic episodes associated with bipolar disorder
and symptoms related to an underlying psychiatric disorder is and the depressive episodes associated with recurrent depres-
particularly challenging to health care practitioners. Anxiety sive disorder, can change signicantly over the course of treat-
and depression are normal responses to life events and illness ment for a number of chronic diseases. Therapeutic blood
and occur throughout the palliative care trajectory. It is the levels of lithium are closely tied to sodium and water balance.
intensity, duration, and extent to which symptomatology affects Additionally, lithium has a narrow therapeutic window,
functioning that distinguishes an anxiety or depressive disor- and life-threatening toxicity can develop rapidly. Treatment
der from symptoms that individuals generally experience in side effects such as diarrhea, fever, vomiting, and resulting
dehydration warrant scrupulous monitoring of dosage and

side effects. Careful monitoring is also indicated during pre-
and postoperative periods. Another common problem
among patients treated with psychotropic medication is that Palpitations
Panic
medications may be discontinued at specic points in the
Restlessness
treatment process, such as the time of surgery, and not
Chest pain
restarted. This may produce an avoidable recurrence of emo- Medical disorder Irritability Anxiety
tionally disabling psychiatric symptoms when the stress of a Medications Jitteriness
life-threatening chronic disease and its treatment is burden Headache
enough. For some patients, psychological distress does not Anorexia
subside with the usual supportive interventions. Unfortu- Apprehension
nately, clinically relevant and severe psychiatric syndromes are
often unrecognized by nonpsychiatric care providers.41,42 Par-
ticularly, as a chronic illness progresses, anxiety and depres-
sion may occur in greater numbers of patients and with
greater intensity.43 One of the reasons that it may be difcult to
detect serious anxiety and depression in patients is that several
of the diagnostic criteria used to evaluate their presence, such
as lack of appetite, insomnia, decreased sexual interest, psy-
Fatigue
chomotor agitation, and diminished energy, may overlap with
Weight changes
usual disease and treatment effects.44 Sleep problems
Additionally, health care providers may confuse their own Medical disorder
Concentration Depression
fears about chronic illness with the emotional reactions of Medications difficulties
their patients (e.g., I too would be extremely depressed if I Constipation
were in a similar situation). Irritability
The Coexisting Nature of Psychiatric

and Medical Symptoms
Depression and anxiety are appropriate to the stress of having Figure 191. Symptoms of depression and anxiety with medical
a serious illness, and the boundary between normal and abnor- etiologies. Source: Leslie Nield-Anderson, unpublished, adapted
mal symptoms is often unclear. Even when diagnostic criteria from Derogatis & Wise (1989), reference 102.
are met for a major depressive episode or anxiety disorder,
there is disagreement regarding the need for psychiatric treat-
ment as psychiatric symptoms may improve upon initiation of Anxiety or Depression with a Medical
medical treatment. A major source of diagnostic confusion is or Pharmacological Etiology
the overlap of somatic symptoms associated with several chronic
illnesses and their treatments and those pathognomic to depres- During progressive or active treatment phases of a chronic
sion and anxiety themselves (e.g., fatigue, loss of appetite, weak- disease, symptoms of anxiety or depression may recur at var-
ness, weight loss, restlessness, agitation). Separating out whether ious intervals relative to a specic causative agent, the stress
a symptom is due to depression, anxiety, the medical illness associated with the illness or a combination of those as well as
and its treatment, or a combination of factors is often exceed- other factors. Diagnostic data from earlier points, both before
ingly difcult. the onset of the current illness and at various points along the
Figure 191 diagrams the overlap between the symptoms of illness course, are vital and should routinely be incorporated
a chronic medical condition and/or its treatment effects and into the plan of care. As psychiatric symptoms become more
the clinical manifestations of anxiety or depression. The symp- prevalent within the context of the lengthening chronic ill-
toms of anxiety or depression may be intrinsic to the medical ness trajectory, attention to the collection of this diagnostic
disorder or induced by certain treatment agents. Symptoms information is a vital and intrinsic aspect of quality compre-
may cease when the medical disorder is treated or the medica- hensive care. History and physical, medication history, mental
tion is discontinued or decreased. Whether the psychiatric status, psychosocial and psychiatric histories (see Table 193
symptoms have a primary psychiatric etiology, occur follow- for screening instruments), electrocardiogram, comprehen-
ing the medical diagnosis or receive equal causal contributions sive laboratory tests including toxicology screening, and rele-
from medical, and psychiatric sources, neurovegetative symp- vant family information regarding available support systems,
toms are not reliable assessment parameters and treatment changes in lifestyle and functioning will promote accurate
may be delayed or never treated. assessment and close monitoring throughout the palliative
Table 193 Table 194

Brief Screening Measures Used in Nonpsychiatric Settings Symptoms Indicating an Anxiety Disorder in the
for Cognitive Functioning, Anxiety, and Depression Medically Ill
Folstein Mini-Mental Exam Chronic apprehension, worry, inability to relax not related to
Beck Depression Inventory illness or treatment
Center for Epidemiological Studies of Depression Scale Difculty concentrating
Geriatric Depression Scale Irritability or outbursts of anger
Hamilton Depression Scale Difculty falling asleep or staying asleep not explained by
illness or treatment
Hamilton Rating Scale for Anxiety
Trembling or shaking not explained by illness or treatment
Hospital Anxiety and Depression Scale
Exaggerated startle response
Zung Self-Rating Depression Scale
Perspiring for no apparent reason
Zung Self-Rating Anxiety Scale
Chest pain or tightness in the chest
Speilberger State-Trait Anxiety Inventory
Fear of places, events, certain activities
Unrealistic fear of dying
Fear of going crazy
care trajectory. This information will assist the health care
team in determining the etiology of anxiety and depressive Recurrent and persistent ideas, thoughts, or impulses
symptoms and, as such, treat and monitor them appro- Repetitive behaviors to prevent discomfort
priately.
Sources: Barraclough (1997), reference 46; Fernandez et al. (1995),
Some patients may have a primary psychiatric disorder that reference 45; American Psychiatric Association (2000), reference 99.
precedes the diagnosis of their chronic medical condition. This
situation is increasingly encountered in primary care and
chronic illness treatment settings. During the diagnostic phase, Table 195
fear and anxiety are expected reactions to the diagnosis of a life- Symptoms Indicating a Depressive Disorder in the
threatening or potentially life-threatening disease. Heightened Medically Ill
apprehension coincides with the anticipated course of treat-
ment, uncertainty, and concerns about the potential impact on Enduring depressed or sad mood, tearful
lifestyle. These initial responses usually resolve in a few weeks Marked disinterest or lack of pleasure in social activities,
with the support of family and friends, use of personal resources, family, and friends
provision of professional care, and hope.45,46 Lingering reports of Feelings of worthlessness and hopelessness
feeling weak, dizzy, worried, or tense and of difculty concen- Excessive enduring guilt that illness is a punishment
trating are often confusing to providers and may suggest an anx- Signicant weight loss or gain not explained by dieting,
iety disorder. When anxiety is accurately diagnosed and treated, illness, or treatments
somatic complaints often diminish. However, if symptoms are Hopelessness about the future
not correctly identied and treated, clinicians must rule out a
Enduring fatigue
worsening medical condition, and the course of illness, treat-
ment and suffering can become needlessly prolonged.39,41 Increase or decrease in sleep not explained by illness or
Depression occurs frequently during the recurrence and treatment
progressive disease phase. An illness course marked with recur- Recurring thoughts of death or suicidal thoughts or acts
rences engenders anxiety and fear with each relapse, as well as Diminished ability to think and make decisions
feelings of desperation. Individuals experiencing depression do
not always present with a dysphoric effect or report distressing Sources: American Psychiatric Association (2000), reference 99; Cassem
(1995), reference 43; Cavanaugh (1995), reference 44; Kurlowicz (1994),
feelings of hopelessness and helplessness.47 Instead, they may reference 98.
present with somatic complaints such as dizziness, headaches,
excessive fatigue, sleep disturbances, or irritability. Accurate
diagnosis and treatment, including pharmacological and psy- appearance, social withdrawal, brooding, self-pity, pessimism,
chotherapeutic management and education, can expedite a sense of punishment, and mood that cannot be changed
somatic complaints and, importantly, the underlying depres- (e.g., cannot be cheered up, not smiling, does not respond to
sive disorder that often causes or exaggerates them. good news) are considered to be more reliable. It has been rec-
Disturbances in appetite, sleep, energy, and concentration ommended that assessment of these affective symptoms pro-
are hallmark symptoms of depression. However, in the vides more accurate diagnostic information for depression in
medically ill, these symptoms are frequently caused by the medically ill patients than neurovegetative symptoms com-
medical illness.48 Symptoms such as fearfulness, depressed monly used in healthy individuals.4851 Tables 194 and 195 list
general criteria to diagnosis an anxiety and depressive disorder in individuals who also have an anxiety disorder. When anxi-
in the medically ill.41,50,51 Whenever symptoms are unremitting ety and depression coexist, assessment and treatment may
or intensify and do not respond to conventional professional be more challenging, underscoring an aggressive, ongoing
and family support, psychiatric evaluations for psycho- approach to assessment and treatment.
pharmacological and psychotherapeutic interventions are A common but erroneous assumption by clinicians is that
essential. the psychological distress that accompanies a medical condi-
Untreated or undertreated psychiatric disorders can be tion, even when it is severe and unremitting, is natural and
profoundly disabling and, as such, can precipitate or exacer- expected and, therefore, does not require or respond to treat-
bate the physical manifestations of chronic disease. The degree ment. This is particularly true when hope for a cure is unavail-
of anxiety and depression experienced by an individual at any able or the prognosis is grave, leading to underrecognition and
given point depends on the degree to which individuals and undertreatment of disabling symptoms and needlessly pro-
their families have been prepared for what to expect. These moting suffering.52 Receiving a life-threatening medical diag-
considerations include: the physical and psychological mani- nosis and undergoing invasive treatment are potent catalysts
festations, the speed and extent of physical devastation for an acute stress response that is not typically expected,
expected, including the likelihood of pain and other potential planned for, or routinely addressed in health care settings.
discomforts and available treatment options, and the individ- Providers dominant concerns are usually centered around
uals history of psychiatric illness and the impact that those treatment options, the pursuit of a cure, improving prognosis,
symptoms and treatments may have on the clinical picture and and relieving physical discomfort. Often, providers are desen-
treatment options.40 sitized to the intrusiveness of medical protocols and treatment
Anxiety and depression typically accompany difcult deci- environments. Most patients are not comfortable and are not
sions regarding both the addition of comfort measures and the encouraged to address feelings of helplessness, dependency, or
withdrawal of diagnostic procedures and aggressive medical fear with professional or family care providers. In fact, they
treatments. Despair regarding separation from family and often avoid such discussions to decrease burden on others, and
friends, worries about burdening caregivers, overwhelming self untreated psychological symptoms may lead to a diagnosis of
and others with end-of-life decisions, and living in existential posttraumatic stress disorder. Posttraumatic stress disorders
uncertainty are just a few of the issues that individuals and (PTSD), typically induced by exposure to extreme stress
families must confront during terminal phases of illness. and/or trauma, increasingly are being linked in the literature
Severe distress, thoughts of suicide, panic, and/or questions to medical treatment situations. Providers are apt to confuse
about assisted suicide may occur, despite the supportive inter- PTSD symptoms such as avoidance and withdrawal as non-
ventions provided by professional and family caregivers. Such pathological responses, e.g., acceptance adjustment. It is
responses require immediate attention and intervention. Sui- common for providers to hear I do not remember anything
cide and assisted suicide are discussed at a later point in this about the hospitalization; it is a blur. I feel like I was in a
chapter. daze . . . ask my wife/husband . . . my memory isnt so great.
In the treatment of PTSD, psychopharmacological agents
Anxiety or Depression Precipitated alone are inadequate and must be accompanied by aggressive
by a Medical Disorder psychotherapeutic interventions, education and support.
PTSD is best treated by a professional with skill treating this
In many cases, an anxiety or depressive disorder occurs second- disorder. Routine psychiatric assessment and the availability of
ary to the diagnosis of a chronic medical condition. The stress of prompt treatment across the palliative care trajectory is criti-
the medical illness itself typically induces anxiety or depression. cal to reduce the prevalence and morbidity of posttraumatic
Often these symptoms diminish when treatment is explained stress disorders that occur in response to medical diagnosis
and initiated and hope is offered. When a patient with a chronic and treatment.35
illness experiences increasing physical dependence on others,
prolonged pain, progressive loss of function and/or immobility,
anxiety and depression can become severe and prolonged. Dis- o]
ease progression may affect body image, self-esteem, social rela- Assessment and Screening Considerations
tionships, employment, and family roles. The extent and speed
at which disabling aspects of a chronic illness occur will impact Assessment of Anxiety
an individuals ability to react and to integrate the upsetting
changes and, subsequently, to develop adjustment skills. The The experience of anxiety is universal, especially when a per-
development of adaptive coping strategies is inuenced by son has a serious chronic illness. Anxiety is a vague, subjective
many factors, particularly the patients premorbid coping strate- feeling of apprehension, tension, insecurity, and uneasiness,
gies and the availability of outside support. usually without a known specic cause. Normally, anxiety
Within the context of a chronic medical condition, anxiety serves as an alerting response resulting from a real or perceived
and depression often occur simultaneously. In general, anxiety threat to a persons biological, psychological, or social integrity,
precedes depression, and depression is more likely to persevere as well as to self-esteem, identity, or status. This alert occurs in
response to actual happenings or to thoughts about happen- trajectory.53 Anxiety responses can be adaptive, and anxiety can
ings, in the past, present, or future. The greater the perceived be a powerful motivating force for productive problem-solving.
threat, the greater the anxiety response.26 A wide variety of Talking, crying, sleeping, exercising, deep breathing, imagery,
signs and symptoms accompany anxiety along the continuum and relaxation techniques are adaptive anxiety-relief strate-
of mild, moderate, severe, and panic levels. Table 196 illus- gies. Responses to anxiety also can be maladaptive and may
trates how anxiety affects attention, learning, and adaptation, indicate psychiatric disorder, but not all distressing symptoms
all of which are essential to coping during the palliative care of anxiety indicate a psychiatric disorder. Table 194 lists anx-
iety symptoms that indicate a psychiatric disorder and call for
psychiatric assessment and treatment. Skill in early recogni-
Table 196 tion of anxiety is crucial so that care providers can intervene
Symptoms of Anxiety and Effects on Attention, Learning, immediately to alleviate symptoms, to prevent escalation and
and Adaptation loss of control, and to enable adjustment and coping. Anxiety
is interpersonally contagious. As a result, therapeutic effective-
Mild
ness can be severely compromised when care providers fail to
Awareness, alert attention, skill in seeing relationships or recognize and manage their own anxiety.
connections available for use
Notices more than previously, ability to observe improved Assessment of Depression
If the person has well-developed learning and adaptive skills,
will be able to use all steps in the learning process, from Often underrecognized and undertreated, depression has the
observing and describing to analyzing, testing, and using potential to decrease immune response, decrease survival
what is learned time, impair ability to adhere to treatment, and impair quality
Moderate of life.54 The assessment of depression in any setting depends
on the providers awareness of its potential to occur. In addi-
Perceptual eld is narrowed, ability to observe decreased,
tion, providers must be cognizant of the risk factors associated
does not notice peripheral stimuli but can notice more if
directed to do so (selective inattention) with depression and its key signs, symptoms, and historical
aspects. In addition to medical comorbidity, risk factors that
If the person has well-developed learning and adaptive skills,
favor the development of a depressive disorder include prior
will be able to use all steps in the learning process, from
observing and describing to analyzing, testing, and using episodes of depression, family history of depression, prior sui-
what is learned cide attempts, female gender, age under 40 years, postpartum
period, lack of social support, stressful life events, personal
Severe history of sexual abuse, and current substance abuse.55 The
Perceptual eld is greatly reduced, focus on one detail or experience of chronic and progressive disease may increase
scattered details dependence, helplessness, and uncertainty and generate a neg-
May be able to notice what is pointed out by another person, ative, self-critical view. Cognitive distortions can easily develop,
but as anxiety escalates will be unable to attend leading to interpretation of benign events as negative or cata-
May dissociate to prevent panic (i.e., fail to notice what is strophic. Motivation to participate in care may be diminished,
happening in reference to self ) leading to withdrawal. Patients may see themselves as worth-
Even with well-developed learning and adaptive skills, less and burdensome to family and friends. Family members
behavior will orient toward getting immediate relief may nd themselves immobilized, impatient, or angry with the
Automatic (not requiring thought) behaviors used to patients lack of communication, cooperation, or motivation.55
reduce anxiety
Cultural Considerations
Panic
Feelings of panic, awe, dread Culture can be a powerful inuence on the occurrence and pre-
Previous foci of attention blown up or scattering of sentation of psychiatric morbidity. In some cultures, anxiety
details increased and depression may be expressed through somatic symptoms
Tendency to dissociate to prevent panic rather than affective/behavioral symptoms such as guilt or sad-
ness. Complaints of nerves and headaches (in Latino and
Inability to focus attention even when directed by
another person Mediterranean cultures); of weakness, tiredness, or imbalance
(in Chinese or Asian cultures); of problems of the heart (in
Even with well-developed learning and adaptive skills,
Middle Eastern cultures); or of being heartbroken (among
behavior will orient toward getting immediate relief
the Hopi) may be depressive equivalents. Cultures may differ
Automatic (not requiring thought) behaviors used to
in judgments about the seriousness of dysphoria; for example,
reduce anxiety
irritability may be a greater concern than sadness or with-
Source: Peplau (1963), reference 52. drawal. Experiences distinctive to certain cultures, such as fear
of being hexed or vivid feelings of being visited by those who
have died, must be differentiated from actual hallucinations or experienced recent changes in your appetite? Have you lost or
delusions that may be part of a major depressive episode with gained weight? What do you usually do to cope with stress (talk
psychotic features. However, a symptom should not be dis- to someone? go to a movie? work? exercise? drugs? alcohol?)?
missed because it is seen as characteristic of a particular cul- Questions related to cognition are as follows: What do you see in
ture (see Table 195).41,48,49,51 your future? What are the biggest problems facing you now? Are
you as interested as usual in your family and friends, work, hob-
Conceptual and Diagnostic Considerations bies, etc.? Have you felt satised with yourself and with your life?
Can you concentrate as well as you usually can? Do you have
The conceptualization of psychological distress is varied. family or close friends readily available to help you? Do you feel
Depression in particular, has a variety of meanings and has able to call on them? As noted previously, disturbances in
been used to describe a broad spectrum of human emotions appetite, sleep, energy, and concentration may be caused by the
and behaviors, ranging from expected, transient, and nonclin- illness and not necessarily indicative of depression.
ical sadness following upsetting life events to the clinically rel-
evant extremes of suicidality and major depressive disorder. Screening for Anxiety and Depression
Depression is common among people with chronic illness.
The term depressive syndromes refers to a specic constella- In chronic illness settings, the need for routine psychiatric
tion of symptoms that comprise a discrete psychiatric disorder, screening has been well documented for identifying patients at
such as major depression, dysthymia, organic affective disor- high risk for psychiatric morbidity, as well as to identify those
der, and adjustment disorder with depressed features. Depres- who can benet from early-intervention programs. Patients
sive symptoms describe varying degrees of depressed feelings may require different interventions based on their placement
not necessarily associated with psychiatric illness. Five major on the distress continuum. Researchers61 concluded that newly
theoretical viewpoints have been used to understand and treat diagnosed patients who are highly distressed can benet from
depression. In the psychoanalytic view, depression represents evaluation and treatment for psychiatric consequences of ill-
the introjection of hostility subsequent to the loss of an ness and that adaptation to the disease can be improved
ambivalently loved object.56 Cognitive views emphasize the through the use of psychosocial interventions and close mon-
mediating role that distorted and negative thinking plays in itoring. A number of tools have been developed to screen for
determining mood and behavior.57 In the sociological view, psychological distress but have not been consistently incorpo-
depression is a social phenomenon in which a breakdown of rated into clinical care.6263 One tool that is easy to administer,
self-esteem involves the loss of possessions such as status, roles reliable, and palatable to patients is the Distress Thermometer.
and relationships, and life meaning.58 Cultural and societal This tool, developed by a team led by Dr. Jimmie Holland at
factors, including illness, increase vulnerability to depression. Memorial Sloan Kettering Cancer Center, is similar to pain
The biological view of depression emphasizes genetic vulnera- measurement scales that ask patients to rate their pain on a
bility and biochemical alterations in neurotransmitters.59 In scale from 0 to 10, and consists of two cards. The rst card is a
studies of medically ill patients, depression is often equated picture of a thermometer, and the patient is asked to mark his
with a crisis response, in which demands on the individual or her level of distress. A rating of 5 or above indicates that a
exceed the ability to respond.60 patient has symptoms indicating a need to be evaluated by a
Conceptual viewpoints are important to the extent that mental health professional and potential referral for services.
they influence the understanding and subsequent treatment The patient is then handed a second card and asked to identify
of the psychiatric symptoms experienced by patients with which items from a six-item problem list relate to the patients
chronic physical illness. Diverse conceptualizations do not distress, that is, illness-related, family, emotional, practical,
diminish the ability to plan and deliver effective care and most nancial, or spiritual. This tool is part of the National Com-
often simply offer complementary ideas concerning the etio- prehensive Cancer Network (NCCN) distress-management
logical signicance of symptoms. In many health care settings, practice guidelines in oncology. This interdisciplinary work-
nurses have the most patient contact and are likely to talk with group chose the term distress management because it was
individuals about their physical and emotional problems and more acceptable and less stigmatizing than psychiatric, psy-
thus to detect psychiatric symptoms and syndromes. Specic chosocial or emotional, and could be dened and measured
screening instruments, such as those listed in Table 193, may by self report.64
be used for assessment. In addition, direct questioning and Again, striving for simplicity and clinical utility, Harvey
clinical observation of mood, behavior, and thinking can be Chochinov and colleagues compared the performance of four
carried out concomitant with physical care. Questions related brief screening measures for depression in the terminally ill.50
to mood may include the following: How have your spirits They found that asking the question Are you depressed? was
been lately? How would you describe your mood now? Have reliable and valid for diagnosing depression and was extra-
you felt sad or blue? Questions about behavior relate to sleep- ordinarily useful in care of the terminally ill. Both the NCCN
ing patterns, appetite, activity level, and changes in energy: Practice Guidelines for distress management and the simple
How are you sleeping lately? How much energy do you have three-word screening sentence for depression can easily be
now compared with 1 month or 6 months ago? Have you incorporated into daily clinical practice.
Addressing Decits in Case-nding Strategies o]

Suicide
Individuals are living longer with chronic illnesses within the
context of aggressive physically and psychologically debili- Suicide is the ninth leading cause of death in the United States.
tating treatments. These trends promise to continue, and Five percent of suicides occur in patients with chronic medical
further study is needed to identify effective approaches to illnesses, with spinal cord injuries, multiple sclerosis, cancer,
treatment. Available data clearly support a policy of routine and human immunodeciency virus disease.65 Because of
psychological assessment in chronic-illness settings. Addi- underreporting, statistics underestimate the magnitude of sui-
tional studies are needed to support intervention develop- cide; intentional overdoses by the terminally ill and inten-
ment that, at a minimum, will likely lead to improved quality tional car accidents are rarely labeled as suicides. The strongest
of life for patients and cost savings at the systems level. In suicide predictor is the presence of a psychiatric illness, espe-
clinical settings, detection and case identification are partic- cially depression and alcohol abuse, although a chronic dete-
ularly difficult. As mentioned, this is due to several factors riorating medical illness with perceived poor health, recent
including: the high prevalence of clinically significant sub- diagnosis of a life-threatening illness, and recent conict or
syndromal psychiatric symptoms in medically ill samples loss of a signicant relationship also are considered to be pre-
(symptoms not severe enough or of sufcient duration to be dictive.65 Males, over age 45 years, and living alone and lacking
classied as a psychiatric disorder), and the overlapping a social support system are risk factors.66 In one study, hope-
nature of physical and neurovegetative symptoms, such as lessness was found to be more important than depression as a
fatigue, changes in appetite, sleep, and sex drive. Different clinical marker of suicidal ideation in the terminally ill.67 Indi-
clinical sites have their own unique limitations, including viduals with progressive chronic illness, particularly during
lack of knowledge, comfort, or time by health professionals the terminal stages, are at increased risk for suicide.68 Other
to assess patients for these symptoms. Consequently, recog- cancer-related risk factors include oral, pharyngeal, or lung
nition of significant psychological distress (psychiatric mor- cancer; poor prognosis; confusion and delirium; inadequa-
bidity) is seriously impeded in clinical settings. Clinicians tely controlled pain; and the presence of deficits, such as loss
need to be trained to recognize the prognostic importance of mobility, loss of bowel or bladder control, amputation, sen-
of comorbid medical illness and psychiatric symptoms sory loss, inability to eat or swallow, and exhaustion.69 The
and to understand how the subtleties of case identification highest-risk patients are those with severe and rapidly pro-
can affect treatment planning. The range in severity of psy- gressive disease producing rapid functional decline, intractable
chiatric symptoms and the often rapid change in both pain, and/or history of depression, suicide attempts, or sub-
psychiatric and physical symptoms across the treatment tra- stance abuse.70
jectory create both a great variance and the need to observe
and record the dynamic interchange between physical and Physician-Assisted Suicide
psychological phenomena over a small time span. The diffi-
culties in case identification discussed may be highlighted by Whereas suicide is the intentional ending of ones own life,
the severity of physical symptoms and the low prevalence of physician-assisted suicide (PAS) refers to a physician acting to
prior mood disorder. The presence of acute physical illnesses aid a person in the ending of his or her life.71 Public demand for
places the individuals under severe physiological as well PAS has been fueled by burdensome, exhausting, and expensive
as psychological and psychosocial stress. In addition, patients dying in acute care settings.72 It is highly controversial; the
are often removed from their usual social support systems to American Medical Association, the American Nurses Associa-
receive treatment and are exposed to psychosocial stressors tion, and the National Hospice and Palliative Care Organi-
unique to the treatment setting (e.g., dependency on hospi- zation have taken strong positions against it.73,74 Implications
tal staff, unfamiliar and sometimes painful diagnostic and for health care providers include the following: to be knowl-
therapeutic procedures, altered eating, bathing, and sleep edgeable about the legal and moral/ethical aspects of PAS; to do
routines, and uncertain prognosis). Symptom assessments a personal evaluation and prepare responses for situations with
must strike a balance between overly inclusive (e.g., mistak- patients where the topic may arise; to improve education about
enly treating the fatigue of cancer treatment as depression) pain management, symptom control, and related issues in the
and overly exclusive (e.g., erroneously dismissing the patients care of dying and seriously ill patients; to conduct rigorous
mood symptoms as understandable). Case identification is research on the attitudes and practices of health care profes-
a crucial first step. The approach to identifying psychiatric sionals with respect to assisted suicide; and to develop effective
symptoms potentially confounded by medical illnesses must mechanisms to address conicts.72,74 There is an ongoing
be defined explicitly. Choice of an inclusive approach avoids debate about the legalization of PAS. Only in Oregon have the
premature exclusion of relevant phenomena. The use of sim- voters approved legalization of PAS.75 The controversy poten-
ilar screening instruments across clinical sites would greatly tially affects pain management in palliative care. Current
facilitate comparisons of information and standardization of efforts to create a federal ban on PAS may have a chilling
assessment and case-nding guidelines. effect on the widely supported approach to pain management
in terminal care of high doses of opiates, regardless of second- prevented suicide before and if he or she wants help or hopes
ary effects on respiration and length of life. Some fear that someone else will decide.76 Most people are relieved to be asked
providing adequate pain relief might be seen as assisting the about suicidal thoughts because it opens communication. Ini-
patient to die.76 Although the Oregon law remains in dispute, tial and periodic evaluation of suicidal potential is necessary
the public dialogue in that state led to palliative care reform for patients with a history, thoughts, or risk factors of suicide.
that signicantly improved end-of-life care in Oregon.75 Events
in Oregon highlight care as a priority and increase the under- Recognition of Clues
standing about the distinction between assisting suicide and
honoring patient preferences for limiting life-sustaining treat- Suicidal persons usually give verbal and/or behavioral clues,
ment.75 Patient concerns most often related to desire to suicide such as isolated or withdrawn behavior or death wishes or death
are unrelieved pain, poorly managed symptoms, depression, themes in art, writing, play, or conversation. Clues may be subtle
worries about loss of control, being a burden, being dependent or obvious, for example, joking about suicide, asking questions
on others for personal care, and loss of dignity.76 Valente and concerning death (e.g., How many of these pills would it take
Trainor66 identied poor quality of life, failed requests for to kill someone?), comments with a theme of giving up, or
treatment withdrawal, and distressing treatments as typical statements that indicate hopelessness or helplessness. Resistance
reasons for suicide in the critically ill. Further, patient requests or refusal of treatments, food, or uids may indicate suicidal
for PAS are not rare, and physicians do provide such services, ideation or intent and require further assessment.74,76 Keys to
even though they are not legal.77 Requests to physicians may determining lethality are suicide plan, method, intended out-
also be indirect, as in the reported case of a patient asking for come (e.g., death or rescue), and availability of resources and
pain relief with the unspoken intent to cause death.78 To fur- ability to communicate.74,76 Lethal means include guns, knives,
ther complicate the issue for health care providers, requests for jumping from heights, drowning, or carbon monoxide poison-
suicide may be rational and not simply a symptom of depres- ing. Other potentially lethal means include hanging or strangu-
sion.76 Rationality has been dened as the capacity to deliber- lation (using strong pieces of twine, rope, electric cords, sheets),
ate, to communicate in relationships, and to reect on and to taking high doses of aspirin or Tylenol, being in a car crash, or
examine ones own values and purposes.76 The accepted crite- undergoing exposure to extreme cold. Low to moderately lethal
ria for rational suicide among adults with terminal illness methods are wrist cutting and mild aspirin overdose.
include the following: rational considerations, understandable
motives, careful planning, review of alternatives, absence of Suicide Interventions
coercion, and recognition of consequences.76 The patients
decisional capacity may be impaired by agitation, disorienta- Severely depressed and/or potentially suicidal patients must
tion, major depression, poor reality orientation, grief and loss, be identied as soon as possible to ensure a safe environment
medications, effects of illness, and ambivalence. Particularly in and appropriate treatment. Prompt action should be taken
these circumstances, a formal psychiatric evaluation is war- including provision of safety, supervision, and initiation of
ranted. See Chapter 59, Palliative Care and Requests for Assis- psychiatric evaluation. A patient with an immediate, lethal,
tance in Dying, for a more in-depth review. and precise suicide plan needs strict safety precautions such
as hospitalization and continuous or close supervision. The
Assessment of Suicide Risk low-risk patient should not be underestimated. If circum-
stances change, risk could change. In all cases, notify the pri-
Assessment and treatment of depression, often overlooked in mary provider, and document the patients behavior and
chronic-illness treatment settings, is a key suicide-prevention verbatim statements, suicide assessment, and rationale for
strategy. In addition, managing symptoms, communicating, decisions, as well as the time and date the provider was noti-
and helping patients to maintain a sense of control are vitally ed.76 If the provider is not responsive to the report of the
important prevention strategies. An assessment of depression patients suicidal ideation, it is important to maintain obser-
should always include direct questions about suicidal thinking, vation and to pursue psychiatric consultation. The motiva-
plans or attempts, despair or hopelessness, distress from poorly tion for suicide can be reduced through palliative care
managed symptoms, and personal or family history of suicidal interventions such as improved pain and symptom manage-
ideation, plans, or attempts.76 When any indicator of suicide ment; referral and treatment for depression or other psychi-
risk is recognized, risk factors, clues, suicidal ideation, level of atric disorders; discussion of alternative interventions to
depression, hopelessness and despair, and symptom distress improve quality of life; referral to spiritual, social, and psychi-
should be thoroughly evaluated to estimate individual lethality. atric resources; and education and accurate facts about
The rationality of the suicidal request or intent must also be options for terminal care or end-of-life decision-making.
evaluated. The nurse should interview the patient and family Openness to talking about suffering, distress, death prefer-
members to nd out why the patient is thinking about suicide ences, and decision-making in a sensitive and understanding
now.76 Find out what method the patient is considering and manner and advocacy to aid communication with others is
whether the means are available. Ask the patient what has helpful for patients and their families.76,77
o]
Management of Anxiety and Depression Table 197
Medications Appropriate for the Treatment of Anxiety in
Psychosocial interventions can exert an important effect on the Medically Ill
the overall adjustment of patients and their families to chronic
Benzodiazepines
illness and treatment.78 Several studies document the bene-
Diazepam (Valium and others)
cial effect of counseling on anxiety, feelings of personal control,79
depression, and generalized psychological distress.80 Increased Flurazepam (Dalmane and others)
length of survival from time of diagnosis has highlighted the Halazepam (Paxipam)
need for psychopharmacological, psychotherapeutic, and behav- Chlordiazepoxide (Librium and others)
iorally oriented interventions to reduce anxiety and depression Alprazolam (Xanax)
and to improve quality of life for patients diagnosed with a
Triazolam (Halcion)
chronic illness.
Clorazepate (Tranxene)
Prazepam (Centrax)
Pharmacological Interventions
Midazolam (Versed, IM, IV, and S/C only)
Pharmacotherapy, as an adjunct to one or more of the psy- Quazepam (Doral)
chotherapies, can be an important aid in bringing psychologi- Estazolam (ProSom)
cal symptoms under control.
Clonazepam (Klonopin)
Lorazepam (Ativan and others)
Pharmacological Management of Anxiety. The prevalence of
anxiety in medical illness is relatively high. As described in Fig- Temazepam (Restoril and others)
ure 191, a variety of disorders have anxiety as a prominent Oxazepam (Serax and others)
symptom of the clinical presentation (see Tables 191 and
Azapirones
192), and many commonly used medications are associated
with anxiety as a side effect. Studies have shown a high preva- Buspirone (Buspar)
lence in cardiovascular, pulmonary, cerebrovascular, and gas- Cyclic Antidepressants
trointestinal diseases, as well as cancer and diabetes. In addition,
Amitriptyline (Elavil and others)
patients with a history of anxiety disorders have increased
Imipramine (Tofranil and others)
rates of diabetes, heart disease, arthritis, and physical handi-
caps compared to the general population. Pain, metabolic Nortriptyline (Pamelor and others)
abnormalities, hypoxia, and drug withdrawal states can pres- Protriptyline (Vivactil)
ent as anxiety. Before instituting pharmacological treatment, Trazodone (Desyrel and others)
any patient with acute or chronic symptoms of anxiety should Desipramine (Norpramin and others)
be thoroughly evaluated, including a review of medications to
Amoxapine (Asendin)
assess the contribution of medical condition and/or medication-
Maprotiline (Ludiomil)
related etiologies for their complaints.
The following brief review of pharmacological treatment Doxepin (Sinequan and others)
must be supplemented with other references concerning Trimipramine (Surmontil)
assessment, intervention, evaluation, and patient education
Other Antidepressants
(Table 197). Benzodiazepines are the most frequently used
medications for anxiety in both medical and psychiatric set- Fluoxetine (Prozac), an SSRI
tings. When longer-acting benzodiazepines, such as diazepam, Sertraline (Zoloft), an SSRI
are used in the elderly or in the presence of liver disease, Paroxetine (Paxil), an SSRI
dosages should be decreased and dosing intervals increased. Bupropion (Wellbutrin), a dopaamine reuptake blocker
They may suppress respiratory drive. Consultation-liaison ser- Nefazodone (Serzone), 5-HT2 receptor antagonist
vices often use lorazepam in medically ill patients because its
Venlafaxine (Effexor), a serotonin/norepinephrine
elimination half-life is relatively unaffected by liver disease, age,
reuptake inhibitor
or concurrent use of selective serotonin reuptake inhibitors
(SSRIs) or nefazodone. Drawbacks include amnestic episodes Other Medications Selectively Used for Their Anxiolytic Effects
and interdose anxiety caused by its short half-life. The latter -Adrenergic blocking agents, such as propranolol
can be remedied by more frequent dosing. If medically ill Monoamine oxidase inhibitors
patients need a longer-acting benzodiazepine for panic disor-
Neuroleptics (antipsychotics), such as haloperidol
der or generalized anxiety disorder, clonazepam is often used
because it is not affected by concurrent use of SSRIs. Clon- Source: Stoudemire (1996), reference 77
azepam may accumulate and result in oversedation and ataxia
in the elderly; therefore, low doses are used. Temazepam is during the palliative care period when a hope for cure is no
useful as a sedative-hypnotic.35 Buspirone, used primarily for longer possible. As explained previously, depressive symptoms
generalized anxiety disorder, is preferable for anxiety in the can be caused by the medical disorder itself, associated with
medically ill because of its lack of sedation, lack of negative medications used for treatment or symptom management,
effects on cognition, insignicant effect of age on elimination or caused or worsened by the stress related to coping with ill-
half-life, and limited effect of liver disease on half-life. Bus- ness. Depression can also predate and recur with the medical
pirone has almost no clinically signicant interactions with illness. To further complicate matters, individuals with med-
drugs commonly used in general medicine. It may stimulate ical illness are often older, with potentially greater risk of
the respiratory drive, which makes it useful in patients with adverse effects from both psychotropic and nonpsychotropic
pulmonary disease or sleep apnea.35 Cyclic antidepressants are medications. Medical illnesses and the medications required
well established as anxiolytic agents, which are particularly to treat or manage symptoms may impose signicantly modi-
effective in the treatment of panic disorder and in generalized ed prescribing regimens on the use of antidepressants.
anxiety disorder. If these drugs are used for anxiety in Therefore, it is necessary to evaluate the possible role of exist-
depressed medically ill patients or used because of their sedating medical conditions and medications that could cause
ing properties in patients with major depression or panic dis- the depressive symptoms. Other general guidelines include:
order, the side effects must be carefully considered. Potentially (1) use the medication with the least potential for drugdrug
deleterious side effects in the medically ill are sedative, anti- interactions and for adverse effects based on the patients drug
cholinergic, orthostatic hypotensive, and quinidine-like. Liver regimen and physiological vulnerabilities, and the greatest
disease and renal disease may affect metabolism and excretion potential for improving the primary symptoms of the depres-
of the drug and, therefore, require careful dosage titration.34 sion; (2) begin with low dosage, increase slowly, and establish
Other drugs that may be used for anxiety include the - the lowest effective dosage; and (3) reassess dosage require-
adrenergic blocking agents, antihistamines, monoamine oxi- ments regularly.81
dase inhibitors, and neuroleptics. Beta-adrenergic blocking In the past, antidepressant drug selection was limited by the
agents may be used for milder forms of generalized anxiety, nearly sole availability of tricyclic antidepressants, but new
but there are cautions and contraindications in the presence of drugs, such as the SSRIs, bupropion, and venlafaxine, have
pulmonary disease, diabetes, and congestive heart failure. vastly simplified pharmacological treatment of depression
Antihistamines are sometimes used, although the effects are in the medically ill.82 No one medication is clearly more
largely nonspecic and sedative. Side effects, such as sedation effective than another. The SSRIs have fewer long-term side
and dizziness, can be signicant for medically ill patients. effects than the tricyclic antidepressants and, in general, are
Monoamine oxidase inhibitors are rarely used in the medically the rst line of pharmacological antidepressant treatment
ill because of the precautions that must be taken to prevent unless specic side effect proles associated with other classes
drug interactions. Neuroleptics, such as haloperidol in low of drugs are desired.
doses, are used for anxiety associated with severe behavioral Psychostimulants such as dextroamphetamine and methyl-
agitation or psychotic symptoms.34 When anxiety develops in phenidate have been useful in the treatment of depression
the context of the terminal stages of cancer, it is often second- in medically ill patients.8385 Advantages include rapid onset
ary to hypoxia and/or an untreated pain syndrome. Intra- of action and rapid clearance if side effects occur.86 They
venous opiates and oxygen if hypoxia is present are usually an can also counteract opioid-induced sedation and improve
effective palliative treatment.81 Anxiolytics are most effective pain control through a positive action on mood.87 Common
when doses are scheduled; if given on an as-needed basis, anx- side effects of psychostimulants include insomnia, anorexia,
iety may increase in patients already frightened and anxious. tachycardia, and hypertension,83 although incremental
Anxiolytic medications help patients gain control over agoniz- dosage increases allow adequate monitoring of therapeutic
ing anxiety. Use of these medications may also assist the patient versus side effects. In patients with cardiac conduction
in psychotherapy, which can help control symptoms. All phar- problems, stimulants may be the treatment of choice. In
macological treatments must be monitored for effectiveness medically ill patients, a 1- to 2-month trial can provide remis-
and side effects. The effects of benzodiazepines are felt within sion from depression even after discontinuation of the drug.
hours, with a full response in days. Buspirone has no immedi- Different studies have shown a 48% to 80% improvement
ate effect, with a full response after 2 to 4 weeks. The sedating in depressive symptoms,87 and this class of medication is
effects of benzodiazepines are associated with impaired motor often quite effective but underutilized in medical settings
performance and cognition. Benzodiazepines have depend- (Table 198).
ence and abuse potential and the possibility of withdrawal Certain medications and treatment agents can produce
symptoms when discontinued. Buspirone has no association severe depressive states. As reiterated throughout this chapter, a
with dependence or abuse. diagnosis of major depression in medically ill patients relies
heavily on the presence of affective symptoms such as hope-
Pharmacological Management of Depression. Patients with lessness, crying spells, guilt, preoccupation with death and/or
chronic illness commonly exhibit transient depressive symp- suicide, diminished self-worth, and loss of pleasure in most
toms at various points in the disease trajectory, particularly activities, for example, being with friends and loved ones. The
Table 198
Medications Appropriate for the Treatment of Depression in the Medically Ill
For Patients with Cardiovascular Disease

Selective serotonin reuptake inhibitors Dopamine reuptake blocking
(SSRIs) compounds
Sertraline (Zoloft) Bupropion (Wellbutrin, Zyban)
Paroxetine (Paxil)
Serotonin/norepinephrine reuptake
Fluoxetine (Prozac) inhibitors
Fluvoxamine (Luvox) Venlafaxine (Effexor)
Citalopram (Celexa)
5-HT2 receptor antagonist properties
Nefazodone (Serzone)
Trazodone (Desyrel)
For Patients with Gastrointestinal Disease

Tricyclic antidepressants 5-HT2 receptor antagonist properties
Amitriptyline (Elavil) Nefazodone (Serzone)
Amoxapine (Asendin) Trazodone (Desyrel)
Clomipramine (Anafranil)
Dopamine reuptake blocking compounds
Desipramine (Norpramin)
Bupropion (Wellbutrin, Zyban)
Doxepin (Sinequan)
Imipramine (Tofranil)
Maprotiline (Ludiomil)
Nortriptyline (Aventyl, Pamelor)
Protriptyline (Vivactil)
Trimipramine (Surmontil)
For Patients with Renal Disease

Tricyclic antidepressants Selective serotonin reuptake inhibitors
Amitriptyline (Elavil) Sertraline (Zoloft)
Amoxapine (Asendin) Paroxetine (Paxil)
Clomipramine (Anafranil) Fluoxetine (Prozac)
Desipramine (Norpramin) Fluvoxamine (Luvox)
Doxepin (Sinequan) Citalopram (Celexa)
Imipramine (Tofranil)
Serotonin/norepinephrine reuptake
Maprotiline (Ludiomil) inhibitors
Nortriptyline (Aventyl, Pamelor) Venlafaxine (Effexor)
Protriptyline (Vivactil)
Noradrenergic agonist
Trimipramine (Surmontil)
Mirtazapine (Remeron)
For Patients with Hepatic Disease

Tricyclic antidepressants
Amitriptyline (Elavil) Imipramine (Tofranil)
Amoxapine (Asendin) Maprotiline (Ludiomil)
Clomipramine (Anafranil) Nortriptyline (Aventyl, Pamelor)
Desipramine (Norpramin) Protriptyline (Vivactil)
Doxepin (Sinequan) Trimipramine (Surmontil)
(continued )
Table 198
Medications Appropriate for the Treatment of Depression in the Medically Ill (continued )
Selective serotonin reuptake inhibitors 5-HT2 receptor antagonist properties

Sertraline (Zoloft) Nefazodone (Serzone)
Paroxetine (Paxil) Trazodone (Desyrel)
Fluoxetine (Prozac)
Noradrenergic agonist
Fluvoxamine (Luvox)
Mirtazapine (Remeron)
Citalopram (Celexa)
Serotonin/norepinephrine reuptake inhibitors

Venlafaxine (Effexor)
For Medically Ill Patients with Anergic Depression

Psychostimulants Dopamine reuptake blocking compounds
Dextroamphetamine (Dexedrine) Bupropion (Wellbutrin, Zyban)
Methylphenidate
Source: Beliles & Stoudemire (1998), reference 100.
neurovegetative symptoms that usually characterize depression and exploratory methods to help the individual understand
in physically healthy individuals are not good predictors of aspects of the medical condition such as emotional responses
depression in the medically ill because disease and treatment and personal meaning of the disease. Psychotherapeutic
can also produce these symptoms. A combination of psy- interventions, as opposed to educational interventions,
chotherapy and antidepressant medication will often prove should be delivered by professionals with special training in
useful in treating major depression in medically ill patients.88 both mental health and specic interventional modalities as
Peak dosages of antidepressants, regardless of drug class, are applied to patients with chronic medical illnesses and pallia-
usually substantially lower than those tolerated by physically tive care needs. Psychotherapy with a patient who has cancer
healthy individuals. Antidepressant medications may take 2 to should maintain a primary focus on the illness and its impli-
6 weeks to produce their desired effects. Patients may need cations, using a brief therapy and crisis-intervention model.78
ongoing support, reassurance, and monitoring before experi- Expression of fears and concerns that may be too painful to
encing the antidepressant effects of medication. It is essential reveal to family and friends is encouraged. Normalizing emo-
that patients are monitored closely by a consistent provider tional distress, providing realistic reassurance and support,
during the initiation and modication of psychopharmaco- and bolstering existing strengths and coping skills are essen-
logical regimens. Patient education is essential in this area to tial components of the therapeutic process. Gathering in-
decrease the possibility of nonadherence to the medication formation about previous associations with the medical
regimen. condition experienced through close relationships can also be
instrumental in clarifying patients fears and concerns and
Psychotherapeutic Modalities establishing boundaries for and differences from the current
situation.
Psychosocial interventions are dened as systematic efforts Depending on the nature of the problem, the treatment
applied to inuence coping behavior through educational or modality may take the form of individual psychotherapy,
psychotherapeutic means.18 The goals of such interventions support groups, family and marital therapy, or behaviorally
are to improve morale, self-esteem, coping ability, sense of oriented therapy such as progressive muscle relaxation and
control, and problem-solving abilities, and to decrease emo- guided imagery. A primary role for clinicians is to facilitate a
tional distress. The educational approach is directive, using positive adjustment in patients under their care. Periodic
problem-solving and cognitive methods. It is important that emotional distress and coping problems can be expected
the educational approach both clarify medical information during the palliative-care trajectory and monitored rou-
that may be missed due to fear and anxiety or misconceptions tinely. Emotional display is not the same as maladaptive cop-
and/or misinformation regarding illness and treatment, and ing. Understanding an individuals unique circumstances
normalize emotional reactions throughout the illness trajec- can assist nurses in supporting the constructive coping abili-
tory. The psychotherapeutic approach uses psychodynamic ties that seem to work best for a particular patient.78
Psychotherapeutic Interventions Targeted As a person moves along the continuum to moderate, severe,
to Symptoms of Anxiety and panic levels of anxiety, the problem-causing distress is lost
sight of and distress itself becomes the focus of attention. Both
Anxiety responses can be thought of as occurring along a con- preventive and treatment strategies can be used with patients
tinuum, from mild to moderate to severe to panic. Lazarus and and family members in a variety of settings. Before assuming
Folkmans92 differentiation of problem-focused coping and that anxiety has a psychological basis, consider the models of
emotion-focused coping provides a framework for intervention interaction and review the patients history for recent changes
strategies matched to the continuum of responses (Table 199). in medical condition and/or medications. Asking whether the
Table 199
Hierarchy of Anxiety Interventions
Anxiety Level Interventions
Level 1 Prevention Strategies

Mild to moderate Provide concrete objective information.
Ensure stressful-event warning.
Increase opportunities for control.
Increase patient and family participation in care activities.
Acknowledge fears.
Explore near-miss events, past and/or present.
Control symptoms.
Structure uncertainty.
Limit sensory deprivation and isolation.
Encourage hope.
Level 2 Treatment Strategies

Moderate to severe Use presence of support person as emotional anchor.
Support expression of feelings, doubts, and fears.
Explore near-miss events, past and/or present.
Provide accurate information for realistic restructuring of
fearful ideas.
Teach anxiety-reduction strategies, such as focusing, breathing,
relaxation, and imagery techniques.
Use massage, touch, and physical exercise.
Control symptoms.
Use antianxiety medications.
Delay procedures to promote patient control and readiness.
Consult psychiatric experts.
Level 3 Treatment Strategies

Panic Stay with the patient.
Maintain calm environment and reduce stimulation.
Use antianxiety medications and monitor carefully.
Control symptoms.
Use focusing and breathing techniques.
Use demonstration in addition to verbal direction.
Repeat realistic reassurances.
Communicate with repetition and simplicity.
Consult psychiatric experts.
Sources: Minarik (1996), reference 17; Leavitt & Minarik (1989), reference 101.
patient was taking medications for nerves, depression, or coping with the experience helps the person to main-
insomnia will help to determine whether drugs were inappro- tain a sense of control and endure the procedure.
priately discontinued or whether anxiety symptoms predated 3. Increase opportunities for control. Illness can seri-
the current illness. In addition, ask about over-the-counter ously disrupt a persons sense of control and increase
medications, illegal drugs, alcohol intake, and smoking his- anxiety. Help the patient to make distinctions
tory. Documentation and communication of ndings are essen- between what is controllable, partially controllable,
tial to enhance teamwork among providers. or not controllable. Focus on what is controllable or
Frequently, patients can identify the factors causing their partially controllable and create decision-making
anxiety, as well as coping skills effective in the past, and when and choice opportunities that t the patients knowl-
they do, their discomfort decreases. Anxiety may be greatly edge. Ask patients to make choices about scheduling
reduced by initiating a discussion of concerns that are painful, the day of the visit and the readiness for and timing
frightening, or shameful, such as being dependent or accepting of procedures and interventions.
help. Use open-ended questions, reection, clarication, and/or 4. Increase patient and family participation in care. Par-
empathic remarks, such as Youre afraid of being a burden? to ticipation in care helps directly in coping and can be
help the patient to identify previously effective coping strate- taught to both the patient and family members. Par-
gies and to integrate them with new ones. Use statements such ticipation may reduce helplessness and increase a
as What has helped you get through difcult times like this sense of control. Patients and family members may
before? How can we help you use those strategies now? or vary in their interest in participating and in their abil-
How about talking about some new strategies that may work ity to do so. Often, female family members are more
now? Encourage the patient to identify supportive individuals likely to be caregivers. Other factors inuencing the
who can either help emotionally or with tasks. ability to participate include family roles such as
spouse, parent, and sibling; quality of relationships;
presence or absence of conicts; and other commit-
Preventive Strategies. Preventive strategies can help to main-
ments, such as work or other family roles. Cultures
tain a useful level of anxiety, one that enhances rather than
also vary in expectations and the duty or obligation
interferes with problem-solving (see Table 199). Effective pre-
about caregiving based on gender or family position.
ventive strategies that can be used by all providers involved
Participation may also help with the resolution of in-
with the patient follow26,90:
effective denial when a persons condition is deterio-
1. Provide concrete objective information. Fear of the rating. Family members who are caring for a person
unknown, lack of recent prior experience, or misin- may recognize and adjust to the deterioration.
terpretations about an illness, procedure, test, or 5. Encourage self-monitoring and the use of a stress
medication, especially when coupled with a tendency diary. Self-monitoring of stress is a cognitive-
to focus on emotional aspects of experiences, may be behavioral intervention. Ask the patient to record the
a source of anxiety. Help patients and families know situations, thoughts, and feelings that elicit stress and
what to expect, and focus attention by realistically anxiety. The patient may record incidences of
describing the potentially threatening experience treatment-related stress, illness-related stress, or
with concrete objective information.91 Describe both other unrelated anxiety-provoking situations. Not
the typical subjective (e.g., sensations and temporal only does this intervention provide assessment infor-
features) and objective (e.g., timing, nature of envi- mation, it also enhances collaboration with the
ronment) features of stressful health care events patient and helps the patient understand the rela-
using concrete terminology. Avoid qualitative adjec- tionship between situations, thoughts, and feelings.
tives, such as terrible. Also known as mental 6. Acknowledge fears. Encourage and listen to the
rehearsal and stress inoculation, concrete informa- expression of feelings. Avoid denying the existence of
tion increases the patients understanding of the situ- problems or reassuring anxious people that every-
ation, allows for preparation under less emergent thing will be ne. Structure your availability. Refrain
and more supportive conditions, and facilitates cop- from avoiding anxious persons or their fears. Avoid-
ing. Encourage the patient to ask questions, and then ance is likely to increase vulnerability, isolation, help-
match the detail of the preparatory information to lessness, and anxiety. Early structured intervention is
the request. Since anxiety hinders retention, use of more economical of time and more effective.
understandable terms and repetition is helpful. Too 7. Explore near-miss events. Past or current exposure
much information at once may increase anxiety. to a near-miss event is a potent generator of extreme
2. Ensure stressful event warning before the event. For stress and anxiety, with heightened vigilance. A near-
example, a person may experience magnetic reso- miss is a harrowing experience that overwhelms the
nance imaging as entrapping or traumatic or the ability to cope. It may be a one-time experience, such
placement of a central line as painful and threaten- as a persons own near-death experience, the cardiac
ing. Giving time to anticipate and mentally rehearse arrest of another person in similar circumstances, or
something faced repeatedly, such as daily painful 4. Promoting patient control and readiness. If a
skin and wound care. Near-misses should be patient is very frightened of a particular procedure,
explored, fears acknowledged and realistically evalu- allow time for the patient to regain enough compo-
ated in view of the persons situation, and help given sure to make the decision to proceed. Forging ahead
in developing coping strategies. when a patient is panicked may appear to save time
8. Manage symptoms. Managing symptoms such as in the immediate situation, but it will increase the
pain, dyspnea, and fatigue is an essential part of pro- patients sense of vulnerability and helplessness,
moting self-control. Symptoms such as pain signal possibly adding time over the long term.
threat and may lead to worries about the meaning of 5. Management of panic. When anxiety reaches panic,
the symptom and whether necessary treatments will use presence and acknowledgment: I know you are
be worse or more frightening. Ensure pain control, frightened. Ill stay with you. Communicate with
especially before painful or frightening procedures. repetition and simplicity. Guide the person to a
Severe anxiety may increase the perception of pain smaller, quieter area away from other people and
and increase the requirement for analgesia. Symptom use quiet reassurance. Maintain a calm manner and
management reduces distress and allows for rest. reduce all environmental stimulation. Help the
9. Structure uncertainty. Even when there are many patient to focus on a single object (see below), and
unknowns, the period of uncertainty can be framed guide the patient in recognizing the physical fea-
with expected events, procedures, updates, and tures of the object while breathing rhythmically.
meetings with providers. Consider using prescribed anxiolytic medication.
10. Reduce sensory deprivation. Sensory deprivation 6. Massage, touch, and physical exercise. For those who
and isolation can heighten attention to various sig- respond well to touch, massage releases muscle ten-
nals in the environment. Without the means for the sion and may elicit emotional release. Physical exer-
patient to accurately interpret the signals, to be reas- cise is a constructive way of releasing energy when
sured, and to feel in control, the signals take on direct problem-solving is impossible or ineffective
frightening meanings, such as abandonment and because it reduces muscle tension and other physio-
helplessness. Feeling isolated and helpless increases logical effects of anxiety.
the sense of vulnerability and danger. 7. Relaxation techniques. Relaxation techniques are
11. Build hope. Provide information about possible satis- likely to be effective for patients with mild to mod-
factory outcomes and means to achieve them. Hope erate anxiety who are able to concentrate and who
also may be built around coping ability, sustaining desire to use them. Some techniques require learn-
relationships, revising goals such as pain-free or ing and/or regular practice for effectiveness. Envi-
peaceful death, and determination to endure.92 Many ronmental awareness is reduced by focusing inward,
additional suggestions are provided in this text. with deliberate concentration on breathing, a sound,
or an image, and suggestions of muscle relaxation.
Treatment Strategies. When it is evident that the persons anx- Progressive relaxation and autogenic relaxation are
iety level has escalated to the point of interfering with problem commonly used techniques, which require approxi-
solving or comfort, the following strategies may be helpful.26,90 mately 15 minutes. Relaxation and guided imagery
scripts are readily available for use by clinicians.26,93
1. Presence of supportive persons. Familiar and sup- 8. Breathing techniques. Simple and easy to learn,
portive people, a family member, friend, or staff breathing exercises emphasize slow, rhythmic, con-
member can act as an emotional anchor. Family trolled breathing patterns that relax and distract the
and friends may need coaching to enable them to patient while slowing the heart rate, thus decreasing
help in the situation without their own anxiety anxiety. Ask the patient to notice his or her normal
increasing. breathing. Then ask the patient to take a few slow,
2. Expression of feelings, doubts, and fears. Verbalizing deep abdominal breaths and to think relax or
feelings provides the opportunity to correct or I am calm with each exhalation. Encourage prac-
restructure unrealistic misconceptions and auto- tice during the day. Some patients are helped by
matic anxiety-provoking thoughts. Accurate infor- seeing photographs and drawings of lungs and
mation allows restructuring of perceptions and breathing to visualize their actions.94
lends predictability to the situation. Aggressive con- 9. Focusing techniques. Useful for patients with
frontation of unrealistic perceptions may reinforce episodes of severe-to-panic levels of anxiety, focus-
them and is to be avoided. ing repeatedly on one person or object in the room
3. Use of antianxiety medications. If medications are helps the patient to disengage from all other stimuli
used, they should be given concurrently with other and promotes control. A combination of focusing
interventions and monitored. Use caution to avoid with demonstration and coaching of slow, rhythmic
delirium from toxicity, especially in the aged person. breathing with a calm, low-pitched voice is helpful.
These techniques enhance the patients self-control, Crisis Intervention. Crisis intervention is appropriate treat-
which is desirable when the stress reaction is exces- ment for a grief-and-loss reaction and when a patient feels
sive and the stressful event cannot be changed or overwhelmed. Effective strategies also include providing guid-
avoided. Both focusing and deep-breathing tech- ance on current problems, reinforcing coping resources and
niques can be used without prior practice and dur- strengths, and enhancing social supports.26
ing extreme stress.
10. Music therapy. Soothing music or environmental Cognitive Interventions. Cognitive interventions (Table 1910)
sounds reduce anxiety by providing a tranquil envi- are based on a view of depression as the result of faulty think-
ronment and prompting recall of pleasant memo- ing. A persons reaction depends on how that person perceives
ries, which interrupt the stress response through and interprets the situation of chronic illness. Patterns of think-
distraction or direct sympathetic nervous system ing associated with depression include self-condemnation,
action.95,96 Music most helpful for relaxation is leading to feelings of inadequacy and guilt; hopelessness,
primarily of string composition, low-pitched, with a which is often combined with helplessness; and self-pity,
simple and direct musical rhythm and a tempo of which comes from magnication or catastrophizing about
approximately 60 beats per minute,95 although ones problems. Cognitive approaches involve clarication of
music with ute, a cappella voice, and synthesizer is misconceptions and modication of faulty assumptions by
also effective. identifying and correcting distorted, negative, and cata-
11. Imagery and visualization techniques. Imagery strophic thinking. Cognitive approaches are effective in treat-
inhibits anxiety by invoking a calm, peaceful ing forms of depression.69 Therapy is usually brief, with the
mental image, including memories, dreams, fan- primary goal of reversing and decreasing the likelihood of
tasies, and visions. Guided imagery is the deliberate, recurrence of the symptoms of depression by modifying cog-
goal-directed use of the natural capacities of the nitions. It requires effort on the part of the patient. The effect
imagination. Using all the senses, imagery serves as is more powerful if homework and practice are included. Cog-
a bridge for connecting body, mind, and spirit.76 nitive restructuring is one of the strategies used in cognitive
Imagery, especially when combined with relaxation, therapy. In this strategy, patients are aided in identifying and
promotes coping with illness by anxiety reduction, evaluating maladaptive attitudes, thoughts, and beliefs by self-
enhanced self-control, feeling expression, symptom monitoring and recording their automatic thoughts when
relief, healing promotion, and dealing with role they feel depressed. The patient is then helped to replace self-
changes. Regular practice of imagery enhances suc- defeating patterns of thinking with more constructive pat-
cess. Guided imagery for pain or anxiety reduction terns. For example, The treatment is not working. I cant
should not be attempted the rst time in periods of cope; nothing works for me, could be replaced with a rational
extreme stress. Imagery in conversation is subtle and response such as I can cope. I have learned how to help myself
spontaneous. Often without awareness, health care and I can do it. New self-statements and their associated feel-
providers questions and statements to patients ing responses can also be written on the self-monitoring form.
include imagery. Easily combined with routine Over time, the patient learns to modify thinking and learns a
activities, the deliberate use of conversational method for combating other automatic thoughts.67
imagery involves listening to and positive use of the Imagery rehearsal is a useful strategy for helping patients to
language, beliefs, and metaphors of the patient. Be cope with situations in which they usually become depressed.
aware of descriptors used for the effects of medica- The rst step is to anticipate events that could be problematic,
tions or treatments because they affect the patients such as a magnetic resonance procedure. The patient is helped
attitude and response. Health care providers can to develop constructive self-statements; then, imagery is used
enhance hope and self-control if they give empow- to provide an opportunity for the patient to mentally rehearse
ering, healing messages that emphasize how the how to think, act, and feel in the situation. The combination of
treatment will help. imagery with cognitive restructuring increases the effective-
ness.67
Psychotherapeutic Interventions Targeted Interpersonal Interventions. Interpersonal interventions (see

to Symptoms of Depression Table 1910) focus on improved self-esteem, the development
of effective social skills, and dealing with interpersonal and
Depression is inadequately treated in palliative care, although relationship difculties. Interpersonal difculties that could be
many patients experience depressive symptoms. Goals for the a focus include role disruptions or transitions, social isolation,
depressed patient are (1) to ensure a safe environment, (2) to delayed grief reaction, family conict, or role enactment. Psy-
assist the patient in reducing depressive symptoms and mal- chotherapies include individual, group, and support groups led
adaptive coping responses, (3) to restore or increase the patients by a trained professional. Patient-led support groups or self-
functional level, (4) to improve quality of life if possible, and help groups are effective for the general chronic illness popu-
(5) to prevent future relapse and recurrence of depression. lation but less able to address the needs of depressed persons.68
Table 1910
Nonpharmacological Interventions for Treatment of Depression
Cognitive Interventions Behavioral Interventions

Review and reinforce realistic ideas and expectations. Provide directed activities.
Help the patient test the accuracy of self-defeating assumptions. Develop a hierarchy of behaviors with the patient and use a
Help the patient identify and test negative automatic thoughts. graded task assignment.
Review and reinforce patients strengths. Develop structured daily activity schedules.
Set realistic, achievable goals. Encourage the at-home use of a diary or journal to monitor
automatic thoughts, behaviors, and emotions; review this
Explain all actions and plans, seek feedback and participation
with the patient.
in decision-making.
Use systematic application of reinforcement.
Provide choices (e.g., about the timing of an activity).
Encourage self-monitoring of predetermined behaviors, such
Teach thought stopping or thought interruption to halt
as sleep pattern, diet, and physical exercise.
negative or self-defeating thoughts.
Focus on goal attainment and preparation for future adaptive
Encourage exploration of feelings only for a specic purpose
coping.
and only if the patient is not ruminating (e.g., constant
repeating of failures or problems). Specic Behavioral Strategies
Direct the patient to activities with gentle reminders to focus Observe the patients self-care patterns, then negotiate with
as a way to discourage rumination. the patient to develop a structured, daily schedule.
Listen and take appropriate action on physical complaints, Develop realistic daily self-care goals with the patient to
then redirect and assist the patient to accomplish activities. increase sense of control.
Avoid denying the patients sadness or depressed feelings or Upgrade the goals gradually to provide increased opportunity
reason to feel that way. for positive reinforcement and goal attainment.
Avoid chastising the patient for feeling sad. Use a chart for monitoring daily progress; gold stars may be
used as reinforcement; a visible chart facilitates
Interpersonal Interventions
communication, consistency among caregivers, and
Educate the patient about the physical and biochemical meaningful reinforcement (i.e., praise and positive attention
causes of depression and the good prognosis. from others).
Enhance social skills through modeling, role playing, Provide sufcient time and repetitive reassurance (You can
rehearsal, feedback, and reinforcement. do it) to encourage patients to accomplish self-care actions.
Build rapport with frequent, short visits. Positively reinforce even small achievements.
Engage in normal social conversation with the patient as Provide physical assistance with self-care activities, especially
often as possible. those related to appearance and hygiene, that the patient is
Give consistent attention, even when the patient is unable to do.
uncommunicative, to show that the patient is worthwhile. Adjust physical assistance, verbal direction, reminders, and
Direct comments and questions to the patient rather than to teaching to the actual needs and abilities of the patient; and
signicant others. avoid, increasing unnecessary dependence by overdoing.
Allow adequate time for the patient to prepare a response. Teach deep breathing or relaxation techniques for anxiety
Mobilize family and social support systems. management.
Encourage the patient to maintain open communication and Complementary Therapies

share feelings with signicant others. Guided imagery and visualization
Supportively involve family and friends and teach them how Art and music therapies
to help.
Humor
Avoid sharing with the patient your personal reactions to the
patients dependent behavior. Aerobic exercise
Avoid medical jargon, advice giving, sharing personal Phototherapy

experiences, or making value judgments. Aromatherapy and massage
Avoid false reassurance.
Sources: Minarik (1996), reference 17; Leavitt & Minarik (1989), reference 101.
Behavioral Interventions. Behavioral interventions (see Table including physical symptoms, psychological distress, caregiver
1910) are based on a functional analysis of behavior and on burden, and psychiatric disorders, can enhance quality of life
social learning theory. These interventions are often used in throughout the palliative care trajectory.
combination with cognitive interventions, such as self- This was reected in Mrs. Bradys outcome. Following clari-
monitoring and imagery rehearsal. The key to the behavioral cation that she would be receiving chemotherapy to halt dis-
approach is to avoid reinforcement of dependent or negative ease progression plus awareness that her reason for refusing was
behaviors. Instead, provide a contingency relationship between based on memories of her mother and, thus, assumptions about
positive reinforcement and independent behavior and posi- her own outcome, led the patient to reconsider and accept treat-
tive interactions with the environment. This approach sug- ment recommendations. A low-dose anxiolytic was suggested
gests that, by altering behavior, subsequent thoughts and for use at bedtime, which the patient received on a short-term
feelings are positively inuenced. It is helpful to structure this basis. Mrs. Brady was still well at the 1-year follow-up.
approach using the following self-care functional areas:
behavior related to breathing, eating, and drinking; elimina-
tion patterns; personal hygiene behavior; rest and activity pat- references
terns; and patterns of solitude and social interaction. The aim
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depression.97 This approach has been effective at helping fam-
2. Richardson JL, Zamegar Z, Bisno B, Levine A. Psychosocial sta-
ily members of terminally ill patients see and accept functional tus at initiation of cancer treatment and survival. J Psychosom
decline. Res 1990;34:189.
3. Wellisch DK, Centeno J, Guzman J, Belin T, Schiller GJ. Bone
Alternative and Complementary Therapies. Complementary marrow transplantation vs high-dose cytorabine-based consoli-
therapies may help reduce mild depressive symptoms, or they dation chemotherapy for acute myelogenous leukemia: a long-
may be used as an adjunct to other therapies for more severe term follow-up study of quality-of-life measures of survivors.
depressive symptoms.68 Strategies described for anxiety, such Psychosomatics 1996;37:144.
as guided imagery and visualization, the use of drawings or 4. Syrjala KL, Chapko MK, Vitaliano PP, et al. Recovery after allo-
photographs, and music therapy, also may be used for depres- genic marrow transplantation: a prospective study of predictors
of long-term physical and psychosocial functioning. Bone Marrow
sion. Art therapy for creative self-expression, use of humor
Transplant 1993;11:319.
and laughter, aerobic exercise, and aromatherapy massage
5. Tschuschke V, Hertenstein B, Arnold R, et al. Associations
have been helpful for mild depressive symptoms.68 Photother- between coping and survival time of adult leukemia patients
apy, which is exposure to bright, wide-spectrum light, has receiving allogeneic bone marrow transplantation: results of a
shown promise in patients with cancer.68 See Chapter 25, prospective study. J Psychosom Res 2001;50:277.
Complementary and Alternative Therapies in Palliative Care, 6. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors consid-
for a more in-depth review. ered important at the end of life by patients, family, physicians,
and other care providers. JAMA 2000;284:2476.
7. Holland J. Clinical course of cancer. In: Holland JC, Rowland
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anxiety and depressive disorders. This chapter has described treatment for cancer. Int J Nurs Stud 1988;25:117124.
the spectrum of anxiety and depressive symptoms during the 11. Richardson JL, Zamegar Z, Bisno B, Levine A. Psychosocial sta-
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12. Vickberg SMJ, Duhamel KN, Smith MY, et al. Global meaning
symptoms and for designing appropriate treatments; guide-
and psychological adjustment among survivors of bone marrow
lines for referral to trained psychiatric clinicians; and a range
transplant. Psychooncology 2001;10:29.
of treatments for anxiety and depression. Supportive psy- 13. Pasacreta JV, Pickett M. Psychosocial aspects of palliative care.
chotherapeutic measures, such as those described in this chap- Semin Oncol Nurs 1998;26:7792.
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and enhance feelings of control and mastery over self and envi- of breast cancer: relationship between denial, delay, and rates of
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Symptom distress, coping style and biological variables as pre- chiatric disorders among cancer patients. JAMA 1983;249:751757.
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20o] Kim K. Kuebler, Debra E. Heidrich, Catherine Vena, and Nancy English
Delirium, Confusion, and Agitation

Herein lies a paradox [delirium], a condition that is often reversible, yet is the hallmark of dying in
most patients. The challenge for the clinician is to identify and treat the reversible underlying causes
in a manner that is consistent with the overall goals of care.P. Lawlor1
Key Points The human living experience will eventually tread the path
Delirium, confusion, and agitation are common symptoms at the toward the inevitable physical decline that accompanies age,
end of life and are extremely distressing to both patient and family. disease, and death. Yet each individuals dying experience is as
Identifying patients at risk of developing these symptoms can lead unique as the life that he or she has lived. Many of the com-
to early recognition and prompt treatment. mon threads that often create fear in the dying process are
The etiology of these symptoms is frequently multi-factorial; some similar and include the fear of pain, the fear of loss, and the
causes are reversible and others not. fear of losing control over ones physical, emotional, and men-
Patient and family education regarding the reasons for these tal capacities. As nurses caring for those that are facing the end
mental changes and how they will be managed is essential. of their lives and their families, it is important that we under-
stand how to empower both patients and families and how to
reassure them that they will receive the care and support nec-
essary to control symptoms at lifes end.
Unmanaged physical and psychiatric symptoms impact
negatively upon the quality of life for each person and his or
her family.2 To ensure optimal quality of life, prompt recogni-
tion, assessment, and intervention of all symptoms become
crucial for the well-being of the patient living and dying from
advanced disease. The patient is often faced with many stres-
sors throughout the course of his or her illness, and the
accompanying psychological distress experienced is as varied
and individualized as the patients personality, coping ability,
social support, and medical factors.2 Cognitive disorders are
frequently seen in dying patients. For example, in the advanced
cancer patient, delirium has been found to be the main reason
for cognitive failure.24 This chapter specically discusses the
symptoms of delirium, confusion, agitation, and dementia and
provides nurses with a framework for approaching patients
with cognitive disorders in the palliative care setting.
o]
Prevalence
The elderly, postoperative patients, critical care patients, and

those facing the last days and hours of life are subject to alter-
ations in cognition. Many patients develop psychiatric symp-
toms during the terminal phase of illness, either alone or in
401
combination with other physical symptoms. The varied psy- everybody is potentially susceptible. For patients who are
chiatric complications include anxiety, depression, and cogni- actively dying, the metaphor of delirium might be used as an
tive disorders.2,4,5 Cognitive disorders have a negative impact aid to diagnosis and to management, while keeping it distinct
upon patient functional capacity and often lead to a poor prog- from the delirium encountered among those not recognized at
nosis.2,4,5 Losing ones sense of self is one of the most feared the outskirts of dying.18 While delirium can occur at any age,
aspects of dying, and maintaining intellectual activity has been the high incidence in elderly patients is often overlooked. Delir-
highlighted as an important area within the good death liter- ium has also been referred to as the reversible madness, which
ature.68 A recent survey revealed that 92% of the seriously ill no clinician should overlook. Studies have indicated that
respondents identied mental awareness as an important approximately 30% to 67% of delirium episodes are reversible.3
aspect for a good death, while only 65% of their physicians Delirium is often unrecognized early in its onset, when mani-
viewed this as a priority.8 Maintaining a mental capacity facil- festations are mild and easily treated. Failure to recognize this
itates the patients ability to strengthen his or her relationships symptom and provide early management contributes not only
with loved ones, and achieves a sense of control and the ability to signicant morbidity and mortality but also to an underes-
to complete life by resolving past issues and contributing to timation of its prevalence. Therefore, early detection and
others.68 Clinically, observations focusing on global con- assessment are likely to improve patient quality of life. Objec-
sciousness within several palliative care settings have identi- tive monitoring and a high level of clinical awareness and skill
ed that the percentages of alert patients often ranged from are necessary to detect and treat cognitive symptoms within
25% to 82% during the nal week of life. This decreased dra- the palliative setting.
matically to 10% to 45% in the last 3 days of life, therefore, con-
cluding that only 34% of these patients were able to speak
lucidly before death.9 o]
Delirium is considered the most common cognitive disor- Denition (Terminology of Cognitive Changes)
der in the palliative care setting and is found in as many as 80%
of patients with advanced cancer.3 Elderly and terminally ill Understanding the many symptoms, syndromes, and diag-
cancer patients with pain are twice as likely to develop cognitive noses associated with cognitive changes in persons with an
disorders, often a result of opioid use, than those without pain.2 advanced illness can be difcult at best, and the use of these
Delirium has been reported in 24% to 40% of hospitalized denitions is often inconsistent in both clinical practice and
patients evaluated by a psychiatric consultation.10 About 30% the nursing and medical literature. Confusion, for example,
percent of patients in the intensive care unit (ICU) and 40% to may at times be used to describe a symptom; at other times,
50% of elderly patients after hip replacement surgery have confusion may be used to describe a syndrome. Terms such
delirium.11,12 Up to 60% of elderly hospitalized patients as encephalopathy and acute confusional state are often
develop delirium as a complication during their hospitalized used to describe changes in mental status instead of using a
course.11 A recent report indicated that 66% to 84% of elderly psychiatric classication based upon set criteria from the
hospitalized patients with delirium are misdiagnosed.13 Many DSM-IV.20 Delirium, for example, may also be referred to as an
studies have reported the lack of detection and identication acute confusional state, acute brain syndrome, and/or an acute
of delirium. These studies include many reasons for the lack of organic reaction.21 In addition, many of these are complex dis-
reporting delirious patients:1417 orders having overlapping yet distinct etiologies and clinical
characteristics. Cognitive disorders in the medically ill inter-
Differing diagnostic terms or descriptors from clini-
face between medicine and psychiatry and all too often owned
cian to clinician (vague descriptors such as confu-
by neither.21 The use of imprecise terminology can lead to
sion, agitation, acute brain syndrome, or metabolic
mislabeling of behaviors, miscommunication among health
encephalopathy)
care professionals, and misdiagnoses of cognitive changes.
Varying presentations of delirium or uctuations
Therefore, the potential for the mismanagement of any cogni-
(hypoactive, hyperactive, etc.)
tive change is extremely high.
Attributing cognitive changes to dementia, depres-
sion, or senescence
Lack of baseline assessment using validated assess-
o]
ment tools
Symptoms Associated with Cognitive Changes
Inexperienced clinicians
Some clinicians may consider delirium to be the hall- The various labels used to categorize cognitive changes are
mark of dying, or a metaphor for what is termed terminal based on the observation and evaluation of symptoms
drop, which distinguishes delirium for those who are actively and behaviors. A common language regarding these symp-
dying.18 Its relevance to palliative care is evident. Delirium toms is essential for accurate communication among health
is also one of the most commonly encountered mental disor- care professionals, which can decrease the variabilities often
ders in general hospital practice19 and has been referred to seen in caring for patients with reversible symptoms (i.e.,
as everymans psychosis, which accounts for the fact that delirium).
Delirium, Confusion, and Agitation 403
Anxiety acute confusion in the elderly patient can contribute to exces-

sive disability, morbidity, and mortality.29,30
Abrupt changes in cognition can lead to anxiety. Cognitive Incidence rates of acute confusion in the elderly hospital-
impairment, regardless of the underlying cause, can disrupt ized patient range from 33% to 80%, with an estimated mean
both the receiving and the processing of sensory information. at 40%.26,31 However, the assessment and effective manage-
This results in a diminished ability to handle stressful situations ment for confused elderly hospitalized patients is problematic,
and can contribute to the sensation of anxiety.22 Anxiety may be and it is predicted that as many as 7 of 10 older patients who
described as a fear of the unknown (not knowing what is experience acute confusion will not receive an accurate diag-
expected) or fear of the known (knowing what to expect), and is nosis, thereby contributing to poor management.26,32
considered a universal human experience. Factors contributing Several older studies have laid the groundwork to help cli-
to anxiety may include previous or underlying anxiety disorders, nicians understand the various etiologies and risk factors asso-
unmanaged pain, and associated medical factors (metabolic ciated with the diagnosis of confusion, which include the
abnormalities, medication side effects, and withdrawal states).3 following work and associated factors:
Anxious patients may complain of tension, restlessness,
Foreman (1992): low potassium, elevated glucose,
jitteriness, autonomic hyperactivity, vigilance, insomnia, dis-
elevated sodium, elevated blood urea nitrogen/
tractibility, shortness of breath, numbness, apprehension, and
creatinine ratio33
worry or rumination.2 However, the patient will most often
Inouye, Viscoli, Horwitz, Hurse, & Tinetti (1993):
present with a chief complaint identifying the somatization of
vision impairment, severity of illness, cognitive
anxiety that, therefore, is often overshadowed with a physical
impairment, high blood urea nitrogen, and creati-
complaint.2 The assumption that anxiety is a normal compan-
nine ratios34
ion to the terminal phase is not considered helpful to both
Pompei, Foreman, Rudberg, Inouye, Brand, & Cas-
the assessment and the interventions associated with this
sell (1994): cognitive impairment, burden of comor-
symptom.2
bidity, depression, and alcoholism35
There are multiple factors that can contribute to anxiety in
Inouye & Charpentier (1996): malnutrition, three
the terminal setting. Many studies have identied a higher
new medications, internal bladder catheter, an iatro-
prevalence of anxiety when combined with depression.2,23
genic event, use of physical restraints36
Patients with anxiety often have multiple etiologies, and the
clinician should not exclude psychological and existential Other contributing factors associated with the onset of
issues as contributory factors, particularly in the alert and ori- acute confusion identied in long-term care residents include
ented patient.2,23,24 a diagnosis of dementia, polypharmacy, uid and electrolyte
imbalances, metabolic disturbances, sensory impairment, and
Confusion multiple disease processes.37
Confusion is common among terminally ill patients and has Agitation

broad consequences for their care and well-being.25 A recent
study that highlighted nurse-identied confusion in 299 hos- Agitation has been used to describe specic behaviors, syn-
pice patients compared confused patients with nonconfused dromes, and outcomes of multiple psychiatric or medical eti-
patients. The median age of patients studied was 78 years, and ologies.38 Allen22 has described agitation as being better
there was an incidence of malignancy in 54%. The data identi- understood as a group of symptoms that might characterize
ed 50% of the patients as confused the week before assess- an underlying disorder. Agitation can include many different
ment, and of those patients, 36% were severely confused or behaviors or manifestations including anxiety, aimless wan-
disabled by confusion. Compared with the nonconfused dering, pacing, cursing, screaming, calling out to a passerby,
patients, the confused patients were more likely to have cancer and arguing. In a factor analysis of agitated behaviors, Cohen-
(64% vs. 43%) and to live in the long-term care setting (21% vs. Manseld and Billing39 identied four types of agitation:
33%).25 Of these patients, common manifestations included
1. Physically aggressive behaviors: hitting, kicking,
disorientation to time and place, impaired short-term mem-
tearing, pushing, and cursing
ory, drowsiness, and easy distractibility. From this data, inap-
2. Physically nonaggressive behaviors: pacing, inappro-
propriate mood, a cancer diagnosis, agitation, and age were
priate robing or disrobing, repetitious mannerism,
considered variables that predicted problematic confusion.25
and handling things inappropriately
Acute confusion or delirium is a manifestation of compro-
3. Verbally agitated behaviors: constant request for
mised brain function and has been identied as the most
attention, screaming, complaining, and negativism
frequently occurring cognitive disorder in the elderly.2628
4. Hiding/hoarding behaviors
The American Psychiatric Association (APA) (2000) denes
acute confusion as a syndrome that is characterized by a dis- These researchers further identied correlations between
turbance of consciousness and changes in cognition that medical diagnoses and types of agitated behavior. They noted
develop abruptly (over a short period of time).20 If untreated, that nursing home residents who typically manifest agitation
through physical behaviors usually suffer from dementia but environmental risks that lead to a denitive diagnosis. Delir-
are not otherwise generally ill. Verbal agitation was found to ium is frequently unrecognized and misdiagnosed by clini-
be prevalent in persons with a generally ill condition and in cians.48 The fact that demented, depressed, and anxious patients
persons with unrelieved pain. However, verbal agitation was may develop delirium additionally makes the diagnosis
not associated with dementia. The researchers believed that difcult.49 However, because of deliriums prevalence in the
the correlation of verbal agitation with disease and pain might hospitalized elderly, the ICU, cancer patients, and the termi-
be explained by the possibility that agitation is a form of expres- nally ill, any patient with deterioration in mental status is best
sion of suffering from a medical disorder. This study illustrates presumed to be delirious until it is proved otherwise.13,32,50,51
the importance of describing the agitated behaviors and not The distinguishing characteristics of delirium and dementia
necessarily describing the patient as being agitated.39 are outlined in Table 20-1.
Other researchers have also noted a relationship between An understanding of delirium, both its clinical course and
disease progression and specic agitated behaviors. Persons its assessment, is particularly important for the palliative care
with dementia, for example, often exhibit agitation.38,40 This is nurse. The palliative care patient population has a high preva-
most likely a direct result of brain alterations that contribute lence of commonly identied risk factors for delirium that
to impairments in memory, judgment, and impulse control. include advanced age, dementia/cognitive impairment, severe
Agitation may be a persons attempt to express feelings and medical illness and the use of multiple medications (sedative/
needs that cannot be verbalized, either physical or emotional hypnotics, anticholinergics, corticosteroids, and opioids).34,5254
(pain, dyspnea, or frustration).39 Furthermore, the consequences of delirium can be severe for
both patients and caregivers. The presence of delirium is asso-
Delirium ciated with increased mortality and morbidity, including pro-
longed hospital stays, functional decline, long-term care
Delirium is a complex psychiatric syndrome and has attracted placement, and, in the case of the imminently dying, a dis-
growing attention in the medical and nursing literature. tressing and uncomfortable death.30,5558 In addition to med-
Descriptions of delirium can be found in medical writings from ical morbidity, there is evidence that psychosocial morbidity is
2500 years ago to the present.40 In spite of this history, the terms also signicant. A signicant number of patients who recover
used to describe the syndrome have been inconsistent, overlap- from delirium remember the episode and report distress from
ping, poorly dened, and often related to the discipline or spe- the experience that includes anxiety, helplessness, and fear.5962
cialty observing the condition. Historically, terms such as Caring for patients with hyperactive delirium has obvious
organic brain syndrome, acute secondary psychosis, exogenous stressors for both families and nurses; however, hypoactive
psychosis, and sundown syndrome have been used to describe delirium is also stressful, especially for families who regret pre-
delirium.41 A review of the recent literature reveals a continuing mature separation from a patient who can no longer commu-
use of a variety of terms to characterize delirium, including nicate.47 Delirium robs patients and families of valuable time.
acute brain failure, acute confusional state, terminal restless- Because of the subtle presentation of symptoms and uctuat-
ness/agitation, and ICU psychosis.29,4245 The APA rst used the ing course associated with delirium, nurses, who have more fre-
term delirium to describe the syndrome, and established diag- quent and continuous contact with patients, are key to the early
nostic criteria in the third edition of the Diagnostic and Statisti- recognition of delirium.28 However, research during the past de-
cal Manual of Mental Disorders (DSM-III), published in 1980.46 cade continues to show that nurses fail to recognize delirium
These criteria were revised in the DSM-III-R and DSM-IV. when it is present, especially in its hypoactive forms.62 This is
While diagnostic criteria in the earlier editions were developed partly due to assessments of cognitive status that rely primarily
from the opinions of committees of experts, the latest edition on orientation, to the exclusion of other aspects such as memory,
(DSM-IV) published in 1994, relied on comprehensive review of attention, and perception.28,63,64 Useful tools have been developed
the literature and data from prospective studies of delirium.47 to evaluate cognitive status and screen for delirium in patients in
Based on the DSM-IV criteria, delirium may be dened as a variety of settings (hospital, home, long-term care, ICU). These
an acute and uctuating organic brain syndrome characterized tools are reviewed later in this chapter. Consistent use could
by global cerebral dysfunction that includes disturbances in improve early recognition of delirium by nurses.65,66 However, to
attention, the level of consciousness, and basic cognitive func- better understand the manifestations of delirium, it may be help-
tions (thinking, perception, and memory).20 Other features ful to discuss each diagnostic criterion in more detail.
commonly associated with delirium include increased or
decreased psychomotor activity, disturbances in the sleep- Disturbance of Consciousness. The term disturbance of con-
wake cycle, and emotional lability.41 sciousness, while inherently vague, is a critical feature in delir-
The diagnosis of delirium is primarily clinical, based upon ium.67 Disturbance of consciousness refers to impairments in
careful observation and awareness of key features.40,47 Because attention and the ability to be aware of and sustain attention to
the signs and symptoms are nonspecic, the clinician must the environment. Attention is typically uctuating and may
look for a constellation of ndings (subtle change or distur- present as a change in the level of consciousness, slowed or
bance in consciousness and/or a change in cognition), identify inadequate reactions to stimuli or the environment, and easy
the rapidity of onset, and assess for associated medical and distractibility. Due to this distractibility, individuals may be
Table 201
Differentiating Delirium and Dementia
Delirium Dementia
Onset Acute or subacute, occurs over a Insidious, often slow and

short period of time (hoursdays). progressive.
Course Fluctuates over the course of the Stable over the course of the day; is
day, worsens at night. Resolves over progressive.
days to weeks.
Duration If reversible, short term. Chronic and nonreversible.
Consciousness Impaired and can uctuate rapidly. Clear and alert until the later stages.
Clouded, with a reduced awareness May become delirious, which will
of the environment. interfere.
Cognitive Impaired short-term memory, poor Poor short-term memory; attention
Defects attention span. span less affected until later stage.
Attention Reduced ability to focus, sustain, or Relatively unaffected in the earlier
shift attention. stages.
Orientation Disoriented to time and place. Intact until months or years with
the later stages. May have anomia
(difculty recognizing common
objects) or agnosia (difculty
recognizing familiar people).
Delusions Common, eeting, usually transient Often absent.
and poorly organized.
Hallucinations Common and usually visual, tactile, Often absent.
and olfactory.
Speech Often uncharacteristic, loud, rapid, Difculty in nding words and
or slow (hypoactive). articulating thoughts; aphasia.
Affect Mood lability. Mood lability.
SleepWake Disturbed; may be reversed. Can be fragmented.
Cycle
Psychomotor Increased, reduced, or unpredictable; Can be normal; may exhibit
activity variable depending on hyper/hypo apraxia.
delirium.
Sources: Adapted from Ely et al. (2001), reference 12; Morrison (2003), reference 19; Brown & Boyle (2002),
reference 21.
unable to follow conversations or complete simple tasks.68 For ory impairments. Patients may not remember conversations,
example, patients may be slow to respond, unable to maintain television shows, or verbal instructions. They may have no rec-
eye contact, or may fall asleep between stimuli. Increasing ollection of the conversation or remember only bits and pieces.
stimuli (touch, sound) may be needed to elicit a response. For example, the person experiencing cognitive changes may
Conversely, patients may be hyperalert and over-attentive to remember the nurse visiting but not anything the nurse said or
cues or objects in the environment.69 The ability to focus can be did. Language disturbances associated with delirium range from
assessed by the patients inability to complete a particular task a lack of uency and spontaneity to rambling discourse that
such as spelling world backwards, or subtracting serial 7s.67 switches from topic to topic. The content of language may be
rich in imagery or extremely simple. There may be long pauses
Change in Cognition. Many aspects of cognitive function are in the conversation or use of repetitious phrases by the patient.
impaired in delirium, including orientation, memory, lan- The person experiencing delirium may also have difculty nd-
guage, thinking, and perception.67,68 Disorientation usually ing the correct word to use in conversation or naming objects
manifests as disorientation to time or place, with time disori- (anomia). Thinking is usually disorganized, as evidenced by
entation being the rst to be affected. Disorientation to other incoherent speech, decits in logic, and responses that are irrel-
people commonly occurs, but disorientation to self is very evant to questions asked.67,69 Perceptual disturbances may
rare.68 Short-term memory decits are the most evident mem- include misinterpretations, illusions, or hallucinations. Visual
misperceptions and hallucinations are most common, but Prodromal and Subsyndromal Signs of Delirium. Some patients
auditory, tactile, gustatory, and olfactory misperceptions or manifest prodromal symptoms such as restlessness, anxiety, irri-
hallucinations can also occur. The individual with delirium tability, distractibility, or sleep disturbance in the days before the
may have the delusional conviction that the hallucination is onset of delirium. These may progress to overt delirium over 1
real and exhibit emotional and behavioral responses consistent to 3 days.67 Recently, Cole and colleagues described a condition
with the hallucinations content.68 known as subsyndromal delirium (SSD).74 The symptoms of
subsyndromal delirium were similar to prodromal symptoms
Additional Features of Delirium. Although not required for but never progressed to overt delirium. Patients with SSD had
the diagnosis of delirium, other features, including sleepwake the same risk factors and similar outcomes as those with delir-
disturbances, psychomotor activity changes, and emotional ium. These ndings may support the notion that delirium is a
lability, often accompany delirium. It is helpful to assess for spectrum disorder in which increasing numbers of symptoms
these symptoms and monitor for any changes in these over are associated with increasingly adverse consequences. Patients
time. Disturbance in sleep patterns is frequently observed in noted to be exhibiting one or more prodromal symptoms or
persons with delirium and was one of the criteria for delir- who report feeling mixed up, having difculty judging the
ium in the DSM-IIIR (3rd ed., revised) denition. However, passing of time, and having difculty thinking or concentrating
this criterion was excluded from the DSM-IV denition of should be assessed for potentially reversible causes of delirium
delirium because it lacked specicity.47 It is common to (such as dehydration, medications, and hypercalcemia), and
observe daytime sleepiness, nighttime agitation, and distur- appropriate interventions should be initiated.
bances in sleep continuity in addition to other features of
delirium.68 Differentiation of Delirium and Dementia. Dementia, in con-
Persons with delirium may also exhibit disturbed psychomo- trast to delirium, occurs in patients who are relatively alert and
tor activity. Continuing research has indicated that there are sev- with little or no clouding of consciousness. Dementia differs
eral subtypes based on motor activity of delirium. These include
a hyperactive/hyperalert subtype, a hypoactive/hypoalert sub-
Table 202
type, and a mixed subtype that features components of the
Subtypes of Delirium: Frequency of Occurrence
other two (Table 202).6972 According to this description,
and Manifestations
hyperactive/hyperalert patients are restless, agitated, with over-
activity of the sympathetic nervous system. Clinicians expect Occurrence Manifestations
delirium to present with agitation, hallucinations, and inappro- Hyperactive
priate behavior. Indeed, the hyperalerthyperactive variant of
Occurs in approximately Agitation
delirium is most commonly recognized.28 Characteristics of
15% of patients with Anxiety
hyperactivehyperalert delirium include plucking at bedclothes, delirium
wandering, verbal or physical aggression, and increased alertness Insomnia
to stimuli, psychosis, and mood lability. Hallucinations
Hypoactive/hypoalert patients appear lethargic and drowsy, Nightmares
respond slowly to questions, and do not initiate movement. This Combative/violent behaviors
type of delirium is characterized by withdrawal from people
Loud abnormal speech
and usual activities and decreased responsiveness to stimuli.
patterns
Because these patients are quiet and withdrawn, the delirium is
often overlooked or attributed to dementia, depression, or Hypoactive
senescence.28,47 Differentiating delirium from the normal aging Occurs in 19% of patients Decrease in physical activity
process, dementia, or depression requires careful and repeated diagnosed with delirium Lethargy
assessment.73
Somnolence
A patient with a mixed subtype shows alternating periods
of both types of behavior. Clinicians are likely to recognize the Apathy
delirium only during periods of agitation, combativeness, or Depression
perceptual disturbance. Periods of lethargy may be seen as Withdrawn
clinical improvements, when, in fact, the delirium may be con- Mental clouding
tinuing and increasing in severity.41,69 A complete assessment
of all symptoms of delirium is required before a change in Mixed Subtypes
behavior can be labeled as an improvement. Most common form and Combined features of both
Persons with delirium may exhibit emotional disturbances. diagnosed in 52% of hyperactive and hypoactive
Anxiety, fear, depression, irritability, anger, euphoria, and apa- patients with delirium delirium
thy are common, with anxiety being the prevailing emotion.
Sources: Adapted from Morrison (2003), reference 19, Brown & Boyle
The delirious patient may be emotionally labile, rapidly and (2002), reference 21.
unpredictably shifting from one emotional state to another.68
in its presence by occurring gradually and progressively over ium.81 Factors present on admission that are associated with
time and is not associated with an acute onset as noted in the development of delirium during hospitalization are visual
delirium.19,21 The sleepwake cycle is not disrupted in demen- impairment, severe illness, dehydration, and previous cognitive
tia but signicantly interferes with short-term memory loss, impairment. Events associated with the onset of delirium dur-
while long-term memory remains intact.19,21 Dementia has a ing hospitalization (precipitating factors) include use of physi-
pronounced impact upon judgment and abstract thinking and cal restraints, malnutrition, more than three medications
is associated with disturbances in higher cortical functions added to the medication prole, and insertion of an indwelling
(apraxia, aphasia).21 catheter.81 Using this information, nurses can identify those el-
Dementia is a strong risk factor for the development of delir- derly at greatest risk for delirium, intervene to prevent delir-
ium.75 It has been noted in the elderly that up to two thirds of ium, and initiate early treatment if delirium does occur.
cases of delirium are superimposed on dementia. It has also Based on multiple studies on delirium, Sarhill and col-
been postulated that delirium may lead to chronic cognitive leagues82 identied the following as predisposing factors for
impairment. Many patients who have experienced delirium are delirium in persons with advanced cancer: medications (opi-
slow to recover to their previous level of function and are at oids, steroids, metoclopramide, and phenothiazine), age 65
greater risk for developing dementia.57,76 The symptom prole and older, brain metastasis, infection, hypoxia, dehydration,
of delirium is very similar in patients with and without demen- hypercalcemia, anemia, and renal failure. Persons were more
tia. Patients with dementia, however, tend to have more symp- likely to develop delirium if ve or more of these predisposing
toms of delirium, especially psychomotor agitation/retardation, were present, with each medication considered a separate fac-
disorganized thinking, and disorientation.77 While some have tor. Identication of these risk factors alerts the palliative care
postulated that hypoactive delirium is more prevalent in nurse to those patients who require a more detailed assess-
dementia, both subtypes have been identied.75,77 ment for early identication of delirium.
Differentiating dementia from delirium is a challenge for cli-
nicians. In one study, presence of dementia was found to be a
Delirium Assessment Instruments. The Mini-Mental State
signicant risk factor for nurses nonrecognition of delirium.28
Examination (MMSE) provides a systematic, scored method for
Careful observation and comprehensive history taking is essen-
evaluating cognitive function.8385 This scored examination can
tial to identify acute mental status changes in demented patients
indicate early changes in cognition as it relates to the cortical
that may indicate a superimposed delirium. While both condi-
function of the brain.3 Orientation, attention, recall, and lan-
tions share the features of impaired memory, thinking, and
guage are evaluated. Scores below 24 (out of a maximum of 30)
judgment, the features of acute onset, altered level of conscious-
are indicative of cognitive changes.84 The MMSE is intended to
ness, and uctuating course are specic for delirium.40 Likewise,
measure cognitive change over time, but does not differentiate
psychotic symptoms and agitation are also common in both
among delirium, dementia, anxiety, and depression.3,86,87 Thus,
disorders. However, in dementia, the symptoms are consistent
the MMSE may best be used as a predictive instrument that
and generally do not wax and wane (See Table 20-2).
directs the clinician to use a delirium assessment instrument for
additional information.
Assessment Table 20-3 provides an overview of instruments used to
assess delirium. These instruments are reviewed because they
As discussed above, delirium is often unrecognized and misdiag-
distinguish delirium from dementia and assess at least several
nosed by clinicians. Factors contributing to under-diagnosis of
of the multiple features of delirium. While all of these instru-
acute confusion in the elderly include lack of formal training in
ments require further study to determine application across
gerontology, knowledge decits about acute confusion, and lack
varied settings and among different patient populations, the
of knowledge about the availability and use of established, stan-
following have shown good reliability and validity in identify-
dardized instruments to assess changes in cognition.78 It is likely
ing delirium in selected populations.79
similar factors contribute to inadequate recognition of delirium
in the palliative care setting. A number of delirium assessment The Memorial Delirium Assessment Scale (MDAS)
instruments have been developed for use in various populations. (Figure 20-1) is based on the DSM-IV criteria3,88,89
These tools vary in the goals, type of data collected, qualica- and is psychometrically valid and reliable in pallia-
tions required of rater, number of items, and time required to tive care settings.81,90 The MDAS requires minimal
complete.79 Some are burdensome and difcult to use in daily training for use and is appropriate for both clinical
clinical practice.80 Palliative care nurses must identify persons at practice and research.
greatest risk for delirium and use standardized, reliable tools to The Delirium Rating Scale (DRS) is the most widely
assist in the diagnosis of delirium in daily practice. used assessment instrument based on the DSM-III
criteria86,91 and is useful in the assessment of delirium
Predicting Delirium. Knowledge of the risk factors associated in the terminally ill.88 It also has the best results for
with delirium is required to identify the population at greatest screening symptom severity. However, it lacks admin-
risk and to assist in early diagnosis. One model used in hospi- istrative ease for the clinician, and no publications are
talized elderly patients is the Risk Assessment Model for Delir- available on the use of the DRS by nurses.79
Table 203
Overview of Delirium Assessment Scales
MDAS DRS CAM NCS BCS
DSM-IV Criterion
Acute Onset
Fluctuating Nature
Physical Disorder
Consciousness
Attention/Concentration
Thinking
Disorientation
Memory
Perception
Purpose
Screening/diagnosis
Symptom severity
Number of Items 10 10 9 9 2
Time to Complete (minutes) 10 Not specied <5 10 <2

MDAS, Memorial Delirium Assessment Scale; DRS, Delirium Rating Scale; CAM, Confusion
Assessment Method; NCS, NEECHAM Confusion Scale; BCS, Bedside Confusion Scale
The Confusion Assessment Method (CAM) is complete a baseline evaluation on all patients and then base
designed for use by a trained interviewer to assess the frequency of follow-up assessments on the number of risk
cognitive functioning in elderly patients on a daily factors for delirium present.
scheduled basis.92,93 Despite its attempt to streamline
a diagnosis, the CAM is a complex instrument that Factors Contributing to Delirium
requires extensive instruction for the rater due to its
subtleties. There are numerous factors that can contribute to cognitive
Nurses designed the NEECHAM Confusion Scale changes in the palliative setting. Multiple medications and
(NCS) to use in routine assessments of hospitalized more predominantly, the use of polypharmacy (using more
elderly.94 No published studies in the palliative care than one drug from the same class) can contribute to delir-
setting are found. ium. Accumulation of specic medications and their metabo-
The Bedside Confusion Scale (BCS) (Table 20-4) lites can be seen especially from drugs coming from the
correlates with the CAM and is designed for use in benzodiazepines, anticholinergics, opioid analgesics, etc.
the palliative care setting.80,82 It requires minimal Other contributing causes include organ failure, for example
training and only about 2 minutes to complete. patients who have end-stage liver failure are unable to effec-
tively manage the metabolism of medications that undergo
Delirium assessment protocols in hospitalized elderly and
hepatic oxidation (e.g. benzodiazepines). Therefore, to sum-
palliative care patients may include daily or even every-shift
marize, common underlying medical conditions that con-
evaluations for delirium. Given the prevalence of delirium in
tribute to delirium include:
these settings, this frequency makes sense. There are no pub-
lished recommendations on the frequency with which delir- Medication toxicities, especially noted in the use of
ium assessment tools should be used in outpatient and home anticholinergic agents, anticonvulsants, anti-
care settings, although some of these patients may be at as great parkinsonism agents, corticosteroids, cimetidine,
a risk as those in inpatient settings. Too frequent evaluation opioids, sedatives, alcohol, and illicit drugs
for delirium in persons at low risk for delirium is burdensome Withdrawal from alcohol, sedatives, benzodi-
to both the patient and the clinician. It does make sense to azepines, and barbiturates
Figure 201. Memorial Delirium Assessment Scale (MDAS). (Copyright 1996 Memorial
Sloan-Kettering Cancer Center. Reproduced with permission.)
Figure 201. (Continued)
Metabolic abnormalities that include hypoglycemia, Dehydration

organ failure (hepatic, renal, pulmonary), uid and
electrolyte imbalances, and endocrinopathies People with chronic illness and the elderly are at risk for uid
(hypothyroidism, hyperparathyroidism) decits due to a number of causes, including use of medica-
Systemic infections tions (diuretics), infections/fever, and inadequate uid
Head trauma intake.95 Fluid decits, whether they are volume depletion
Neoplastic disease (intravascular water and electrolytes) or dehydration (total
Vascular disorders (transient ischemic attack, body water decit), place patients at risk for numerous
thrombosis, myocardial infarction, cardiac adverse consequences, including changes in behavior, cogni-
failure)19,21 tion, and energy level.82 Dehydration can cause confusion,
There is no evidence from randomized controlled trials to

Table 204 support approaches to uid decits in terminally ill patients.
The Bedside Confusion Scale
Thus, we do not know the benets and risks of uid decit or
Parameter Scoring whether hydration really can improve symptoms, quality of life,
or quantity of life when used in a situation in which the patient
Level of Alertness Normal = 0
likely has a life expectancy that might be measured in days as
Hyperactive = 1 opposed to months. In their absence, current opinion on the
Hypoactive = 1 benets and risks of terminal dehydration rests primarily on
Test of Attention: timed Delay of >30 seconds = 1 clinical observation and descriptive studies conducted in the
recitation of the months 1 omission = 1 last decade. These studies primarily involved patients with late
of the year in reverse order stage, terminal cancer and, therefore, ndings may not be perti-
2 omissions = 2
nent to other populations. They do, however, provide beginning
3 omissions, reversal of
insight into the experience of uid decit. For example, the dis-
task, termination of task = 3
tress experienced by dehydrated patients appears to be mini-
Inability to perform = 4
mal.100102 Other studies have shown that patients who are
Total BCS score is point score of Level of Alertness plus score
clinically dehydrated may have normal laboratory parame-
of Test of Attention; range is 05.
ters.102,103 While experience of thirst and dry mouth has been
0 = normal found to be related to dehydration and hyperosmolality,6 others
1 = borderline have found little relationship between uid status and uid
2-5 = diagnostic of confusion therapy.102105 On the other hand, dehydration may contribute to
neurotoxicity (restlessness, delirium, myoclonus) when it leads
Source: Adapted from Stillman & Rybicki (2000), reference 80. to renal failure and accumulation of metabolites and toxins.51,106
Since dehydration most likely has an interactive effect on devel-
opment of delirium, rehydration may or may not affect the
restlessness, and neuromuscular irritability.96 On the other course of delirium in the terminal phase.107,108
hand, reduced intravascular volume and glomerular ltration It is possible that clinicians may provide comfort for dying
are known to precipitate prerenal failure. The subsequent accu- patients by either avoiding or providing articial hydration in
mulation of drugs normally excreted by the kidneys may pre- the dying days. Decisions of hydration should be based on
cipitate further adverse effects.1 Fluid decits can also increase careful patient assessment and the goals of the individual
the risk of pressure sores, precipitate fatigue, fever, constipa- patient and family. The decision to avoid articial hydration in
tion, and postural hypotension.97,98 Furthermore, dehydration favor of oral uids and meticulous oral hygiene may avoid
has been identied as a risk factor for delirium.32,53 problems such as pulmonary edema and intrusive technology.
In patients whose death is not imminent, correction of uid For patients in distress from neurotoxicity or thirst, a time-
decits is imperative. However, uid replacement for patients limited trial of hydration via carefully monitored intravenous
approaching death is controversial. In most care settings, (IV) or subcutaneous uid administration may provide relief
aggressive maintenance of uid and electrolyte balance is com- and promote comfort.96,98
mon practice. Yet some palliative care practitioners argue
against the appropriateness of uid replacement in the last days
of life. Common arguments concerning the benets of not cor- o]
recting uid decits include: (a) decreased stress on the pul- Pharmacological Interventions for
monary system; (b) decreased brain swelling and discomfort the Management of Delirium
related to headaches and confusion; (c) reduction in cardiopul-
monary problems (congestive heart failure, pulmonary The APA has developed a practice guideline to support the
edema); (d) decreased airway secretions; (e) reduction in management of patients diagnosed with delirium.109 After a
urinary incontinence with decreased urine output; and complete history and physical examination and discerning
(f ) decrease in pain from the potential release of endor- reversible contributing factors to delirium, a prompt psychiatric
phins.100102 On the other hand, some palliative care providers consultation should always be considered in the primary man-
have challenged the idea that dehydration is universally bene- agement for this patient population. Psychiatry may be able to
cial in dying patients.97,103 The potential burdens of uid decit point out important environmental factors that the primary
include: (a) precipitation of confusion, restlessness, or neuro- care team has not considered, such as an increase or decrease in
muscular irritability from buildup of toxins and metabolites; sensory input or opportunities that would improve orienta-
(b) confusion and syncope when dehydration is rapid (diar- tion.110 Despite the conciseness and comprehensiveness of these
rhea, paracentesis); (c) discomforting symptoms such as thirst, guidelines, there is little information on the safety and efcacy
dry mouth, cracked, parched or painful oral mucosa; and of the newer antipsychotic that will be briey described below.
(d) the lay perspective of dehydration as contributing to an Understanding that the use of sedative hypnotics (e.g.,
uncomfortable death.96,99 benzodiazepines) can actually contribute to the symptom of
delirium, a recent physician survey identied the lack of In the setting of severe delirium, 4% of those queried chose
knowledge and skills in successfully treating delirium. The no treatment with drugs; 180 of the respondents, however,
impetus for this survey was based upon the concerns that ben- considered haloperidol as a single agent (64%). Seven consid-
zodiazepines were too commonly prescribed for the manage- ered risperidone, one thioridazine, and one loxapine. There-
ment of general delirium in older hospitalized patients.111 fore, 66% of the respondents chose an antipsychotic agent.111
There is a substantial body of literature that can guide clini- Lorazepam as monotherapy was the choice in 20% of the
cians in the management of delirious medically ill older survey respondents, and lorazepam in combination with
patients, who constitute the highest risk of developing this haloperidol was selected as an intervention by 8%. Seven of
symptom.111 The APA clearly articulates that there is substan- the respondents who chose haloperidol for severe delirium
tial clinical condence and available data suggesting that the would prescribe lorazepam for mild delirium. Thirty percent
use of benzodiazepines as monotherapy may be ineffective in of the respondents chose lorazepam alone or in combination
the treatment of delirium, with the exception, however, of with haloperidol for the treatment of choice in patients with
those patients who are experiencing delirium as a result of mild or severe delirium.111 The respondents who did choose
withdrawal from alcohol or benzodiazepines.109 The physician haloperidol as an intervention for the management of delir-
survey was mailed to physicians thought to have experience ium in their patient population chose low-dosing schedules.
caring for older patients who would at some point experi- From this data, 20% of the respondents selected lorazepam
ence delirium in the course of their illness. A total of 286 sur- as monotherapy to treat severe delirium. The investigators of
veys were collected to discern the clinical management of this study identied concern, given the ability of benzodi-
delirium.111 azepines themselves to cause cognitive impairment and create
Table 205
Pharmaceutical Management
Anxiety/Agitation
Alprazolam 0.251 mg tid/qid 8 mg
Amitriptyline 1025 mg qhs 150 mg
Chlorpromazine 1025 mg tid/qid 600 mg
Citalopram 1020 mg qd 60 mg
Diazepam 25 mg q 812 60 mg
Haloperidol 0.52 mg bid/q4 20 mg
Mirtazapine 7.51.5 mg qhs 45 mg
Olanzapine 2.5 mg bid 20 mg
Delirium
Chlorpromazine 12.550 mg q412 600 mg
Haloperidol* 0.55 mg q412 20 mg
Lorazepam* 0.52 mg q14 hr 10 mg
Midazolam 15 mg load c/i 60 mg
Phenobarbital 13 mg/kg load c/i 600 mg
*Combination is recommended as rst line in patients with an anxiolytic component to their
restlessness
Terminal Sedation
Similar medications as in treating delirium.
Midazolam 26 mg/hr sq/IV drip
Triazolam 0.25 mg all day (sl/pr)
Chlorpromazine 100200 mg titrate up to 800 mg (sl, pr, sq, IM)
Droperidol 1.252.5 mg q24 hr (IM IV)
Clonazepam 0.52 mg bid/tid (sl, pr, IV)
Phenobarbital 1020 mg bid/qid (sl, pr, sq)
Sources: Adapted from Smith & Kuebler (2002), reference 37; Schwartz & Masand (2002), reference 110;
Caraceni & Grassi (2003), reference 114; Passik & Cooper (1999), reference 116.
delirium.112 The APAs consensus is that benzodiazepines enzyme system, inhibits the specic isoenzyme CYP 2D6 when
have proven ineffective in the treatment of delirium. The combined with analgesics such as codeine or oxycodone.118
APA further suggests that the use of benzodiazepines used in Haloperidol when combined with SSRIs (serotonin reuptake
combination with haloperidol should only be considered for inhibitors) and TCAs (tricyclic antidepressants) can interfere
patients who cannot tolerate low doses of antipsychotic with the metabolism of haloperidol.119
medications or for those with problematic anxiety or agita-
tion.109
The adverse effects of benzodiazepines are well docu- o]
mented in the delirium literature and include profound seda- Nonpharmacological Nursing Interventions
tion, respiratory depression, and hypoxia.113 Benzodiazepines
have been shown to contribute to troubling behavioral side Delirium Risk Reduction. Given the correlation between the
effects such as anger, agitation, restlessness, hostility, and vio- number of predisposing factors and the incidence of delirium,
lent and aggressive behaviors.113,114 The rationale for choosing it makes sense to intervene promptly to reduce the number of
to use a benzodiazepine for the delirious patient outside of alco- risk factors. Inouye and colleagues87 demonstrated that the
hol or benzodiazepine withdrawal should be clearly dened.114 rate of delirium in elderly patients receiving multicomponent,
Since benzodiazepines contribute to and worsen the symptom targeted interventions to reduce risk factors was signicantly
of delirium, they may be considered for use in patients who lower than in those receiving usual care. The protocol
are extremely agitated or anxious and require sedation.114 included providing orientation communication tools, engag-
(Table 20-5) ing patients in cognitively stimulating activities, promoting
Haloperidol is most often considered as the drug of choice ambulation or active range of motion, administering a non-
in the management of delirium with the exception of alcohol pharmacological sleep protocol if patient has difculty falling
or benzodiazepine withdrawal.3,110,114 Haloperidol has very few asleep, using or repairing visual and hearing aids as needed,
anticholinergic side effects, has limited active metabolites, and and instituting volume repletion in the presence of hydration.
is not as sedating as benzodiazepines. It is readily available These interventions were most effective in patients who were
for oral, intramuscular, subcutaneous, and IV administration at intermediate risk for delirium. The interventions had no
(the latter two are not FDA approved in the United States and signicant effect on the severity of delirium once an episode
United Kingdom).110,114 had occurred, demonstrating that primary prevention is the
Haloperidol should be dosed at 1 to 2 mg every 2 to 4 most effective strategy. Although no similar studies are found
hours as needed, with dose increases for agitated patients. in the palliative care setting, these should be part of basic nurs-
Haloperidol can, however, prolong the QT interval and may ing care for all patients, and most can be taught to patients
require that patients be monitored if receiving IV dosing.110 caregivers.
Because most dopamine antagonists antipsychotics are
effective in the treatment of delirium, using the newer atypi- Restful Environment. In the presence of delirium, the inter-
cal antipsychotics may be considered. However, there are ventions such as orientation and ambulation may no longer
currently few randomized and controlled studies to promote be as helpful. A quiet, restful environment is a means of
strong evidence, but there is a need to investigate this area reducing the internal and external sensory stimuli that often
further. insult the delirious patients cortical brain.10,120,121 Familiar
Risperidone is widely accepted for use in elderly agitated sounds, smells, and textures convey warmth and caring for
and aggressive demented patients, with doses ranging from the agitated and restless patient. Patients who experience con-
0.5 mg to 1.5 to 2 mg/day for dementia patients and lower fusion as a result of a delirious episode may have a greater
doses in delirious patients.115 In the literature, there have been need to relate to the familiar voice of a signicant caregiver or
a few case reviews that demonstrate the effectiveness of to the soft touch of a favorite pet. Since the visual eld may
risperidone on delirium. Though the evidence is limited, it present distorted images, sound, smell, and touch are avenues
appears that risperidone could be used to effectively manage that nurses and caregivers can use to communicate under-
the psychotic symptoms often associated in the setting of standing and reassurance for the cognitively impaired
delirium.110,114 patient. Reorienting to time is of minimal value as time
Olanzapine has been useful in a series of anecdotal case has little meaning to the patient. Television and extraneous
reports.116,117 It does not create extrapyramidal effects and is noise should be avoided. By reducing the excess stimuli, per-
often considered as a second-line agent in patients who cannot tinent relaxing sounds of music or a familiar voice can be
tolerate the extrapyramidal effects of haloperidol. Olanzapine received.121
is initiated at 5 mg at bedtime and may be increased to 10 mg, The sound of familiar music can also quiet the restless
with 2.5 mg as needed throughout the day.116 mind. Learning from the family or caregiver what the patients
Clinicians prescribing antipsychotics for delirium should favorite music has been in the past and encouraging its use not
have a basic knowledge of the drug interactions with other only includes the family but also promotes a soothing envi-
concomitant medications that the patient may encounter. For ronment. When deemed appropriate by the professional sup-
example, haloperidol, which is metabolized through the P450 port team, integrating the use of psalms and prayer may be of
value to the family whose background is inuenced by the When patients experience the anxiety and fear associated
Judeo-Christian religions. Knowledge of rituals used in vari- with a delirious episode, a simple hand massage with lavender
ous cultures, along with individual/family belief systems, is oil can help provide a calming and relaxing effect. The essen-
essential. tial oil of lavender (Lavandula angustifolia) acts primarily on
the central nervous system, resulting in a sedative effect. The
Supportive Care for Terminal Agitation. The importance of relaxation effect is believed to be a direct result of the bio-
supportive interventions for patients in the nal hours of life chemical properties of lavender due to its high content of lina-
and their family members should not be underestimated.10,121,122 lyl acetate (ester). In the home setting, scented candles can be
It is important for the nurse to distinguish between acute con- placed in the room. The use of candles can also symbolize a
fusion, signaling a possibly treatable and reversible delirium, sacred space of solitude and peace.
and nearing death awareness. Callahan and Kelly123 dene
nearing death awareness as a special knowledge about the pro- Use of Touch. Touch with intent offered by the caregiver, nurse,
cess of dying; it may reveal what dying is like and what is or volunteer, may express caring and safety to the confused mind
needed to die peacefully. Nurses have a unique role in helping of the patient. The clinical experience of nurses using therapeu-
caregivers understand this symbolic communication. Themes tic touch has value in calming the patient who has reached the
of nearing death awareness include describing a place, talking end of lifes journey. Therapeutic touch, a gentle and noninvasive
to or being in the presence of someone who is not alive, expression by a nurse or caregiver, will relax the physical body, an
knowledge of when death will occur, choosing the time of effect that may be observed in the patients facial expression and
death, needing reconciliation, preparing for travel or change, relaxation of muscles as the breath ceases. Cathleen Fanslow-
being held back, and symbolic dreams. When nurses under- Brunjes,128 a nurse clinician who worked with Elisabeth Kbler-
stand these themes, what may sound like confused words to Ross and later at Calvary Hospital in the Bronx, pioneered the
others may be understood as symbolic expressions of the use of therapeutic touch while caring for the dying. The
patients own awareness that he or she is dying. For example, a handheart connection developed by Fanslow-Brunjes128 is a rel-
plea of I want to go home may be answered with I know, its evant intervention for use in terminal restlessness and terminal
time and you can go when you are ready, rather than with the anguish. Based on the principles of therapeutic touch, in con-
more literal You are home.123 junction with the ancient healing system of Tibetan Buddhism
When the caregiver and nurse communicate compassionate and Ayurvedic medicine, it encourages letting go.
understanding, the patients restlessness is often subdued.114,123,124
Caregivers can offer insight into the patients restlessness if
queried on issues that may remain unresolved for the patient.120 o]
Byock,125 identies ve requirements for relationship comple- Patient and Family Teaching
tion, by saying: I forgive you; Forgive me; Thank you; I
love you; and Goodbye. Pain and resentment within the Patient and family education is the cornerstone of com-
family that has been kept hidden during the patients illness prehensive end-of-life care. Through proper education and
may emerge when death is on the threshold. A counselor, chap- support, cognitive disorders may be avoided, recognized early,
lain, or other spiritual caregiver in the palliative care setting can or shortened. When a cognitive disorder leads to distress,
offer families solace and support. appropriate education and support can decrease the severity
of symptoms by providing open and adequate communica-
Use of Smell. The faint scent of freshly baked bread often con- tion to lessen the stimuli that exacerbate symptoms.126 Teach-
veys a sense of safety in ones remote memory. A pleasant ing activities associated with cognitive disorders at the end of
scent is remembered as a time of joy, a safe and secure life involve prevention, identication, intervention, and sup-
moment of love and caring. The sense of smell travels by way portive care issues.
of the olfactory nerve to the central part of the brain, known
as the limbic system. The limbic system is known as the seat Preventing Terminal Anguish. As terminal anguish is related to
of emotion, where anxiety and fear are labeled as threatening unresolved issues, often involving guilt,120 it is important to
to the self.14 encourage the patient and family to identify and to address
In palliative care settings throughout England and Ireland, unresolved issues. This sensitive topic can be introduced by
scents are used as an intervention in the form of essential telling the patient that many times people hold old grudges
oils. Essential oils are aromatic substances extracted from and hurts inside because they seem too painful or difcult to
plants.126,127 A minute drop of oil can be added to massage oil talk about. However, the common experience is that not talk-
and applied to the skin in the form of a massage. Clinical stud- ing about these concerns makes treating somatic symptoms
ies have indicated a positive and prolonged effect in reducing even more emotional and difcult.
anxiety when using scented oils in conjunction with mas-
sage.14,127 A review of clinical studies of patients in the pallia- Preventing Delirium in the Dying. As medications are the
tive care setting concluded that providing massage with most common reversible and preventable cause of delirium,129
essential oil is of therapeutic benet.127 patients and families require education on the proper dosing
and scheduling of all medications. Delirium can be caused by These symptoms may go unnoticed, only to be recalled later in
both taking too much medication (leading to toxicity) or family interviews.10,109 Therefore, it is important to teach the
too little (causing discomfort or potential withdrawal). It is patient and family to report any new feelings of uneasiness,
important for nurses who care for patients in home care and anxiety, restlessness, or mood changes.
clinic settings to review all medications with the patient and
primary caregiver. Ideally, patients or family caregivers will Lessening the Severity of the Symptoms of Delirium. The indi-
recognize both the generic and trade names of their medica- vidual experiencing delirium may be very frightened regarding
tions. Patients and family caregivers need to know the sched- what is happening. Clinicians need to provide reassurance that
ule for each medication, the side effects of each to report to delirium is usually temporary and that the symptoms are part of
their clinicians, and what to do if they should lose or run out a medical condition.109 This intervention may signicantly
of a medication. Medication charts, pillboxes, and medication decrease fear and anxiety. The purpose of all supportive mea-
information cards or sheets may be useful tools. sures needs to be explained to both the patient and the family.
Patients and family also need to understand that any dis- For example, discuss the purpose of any hydration ordered, the
comfort that is not adequately addressed can lead to complica- importance of adequate rest, and the rationale for orienting
tions, such as feeling nervous, confused, or worse. Thus, interactions on the part of nursing staff and family.130
education for managing symptoms such as pain, nausea, con- The family should be informed regarding the uctuating
stipation, and insomnia is an important component of the nature of delirium19,21 to prepare them for the changes in
teaching plan to prevent delirium.19,21 behavior and to prevent them from misinterpreting these
Knowing that sensory deprivation, sensory overload, and frequent changes. Reorienting the patient to time, place, and
unfamiliar or threatening surroundings may contribute to the persons in the environment may assist him or her to stay ori-
development of delirium, it becomes evident that patient and ented. Repetition is important to compensate for memory
family education should include evaluating the patients sen- impairment.120 Thus, the family should be taught to correct
sory environment and developing strategies to provide appro- the patients orientation errors gently and regularly. If, how-
priate levels of sensory stimulation. For some patients, this ever, correcting orientation errors leads to increased distress in
may mean encouraging interactions with caregivers and oth- the patient, this strategy should be discontinued.19,21
ers (e.g., hospice volunteers), having the television or radio at The delirious patient is at risk for misinterpreting the envi-
a level pleasing to the patient, being sure the patient can see ronment. The family should be encouraged to evaluate the
out a window to sense day and night clues, encouraging touch patients environment for over- or undersensory stimulation.
(e.g., massage or range-of-motion exercises), and assuring that Interventions to correct the potential for sensory deprivation
the patient uses any needed sensory aides, such as eyeglasses or or overload, as mentioned above, may be appropriate.
hearing aides. Behaviors associated with delirium can be distressing for
Conversely, the patient who is in an environment where family caregivers to observe and may lead to fears that their
sensory overload is a potential requires education on decreas- loved one has gone crazy.109,120 The family needs to hear that
ing sensory stimuli. Acute care settings are well known for delirium is the result of a biological disorder and that the
the potential for sensory overload. However, many times, the symptoms are generally temporary. The family should also be
potential for sensory overload in the home is not assessed. The included in discussions of current, predicted, or resolving
combination of noises from vacuums, mixers, dishwashers, delirium in the patient. In addition, the family should be
televisions, radios, conversations, and patient equipment (e.g., encouraged not to take behavior personally.22
oxygen concentrators) can be overwhelming. In the suscepti-
ble patient, it may be helpful to close room doors, to run dish- Teaching Following an Episode of Delirium. Follow-up teach-
washers or other equipment at different times of the day, to ing will include a discussion with the patient about the appar-
turn off or turn down televisions and radios when conversing, ent cause of delirium so that both the patient and family are
or to unplug the telephone at certain times of the day. aware of risk factors. The individual may or may not recall
Being in a strange or threatening environment can con- events during delirious episodes. Some individuals have fright-
tribute to delirium. Should a patient need to be admitted to an ening recollections of the delirious episode. Thus, it is impor-
acute care or extended care setting, it is important to make tant to assess the presence of any distressing memories. Extra
that environment as familiar as possible. Encourage the psychotherapeutic support to work through the experience
patient and family to bring in familiar photographs or objects, may be appropriate.2,109
establish a plan for familiar persons to visit regularly, teach
family to greet their loved one at eye level, and encourage the
9=
use of touch, since this is very reassuring to the patient.
case study
M.H., a Patient with Metastatic Breast Cancer
Early Identication of the Symptoms of Delirium. The prodro-
mal symptoms of delirium may be easily overlooked. It is not M.H. is a 54-year-old Caucasian woman who has self treated
uncommon for persons with advanced diseases to feel restless, her metastatic breast cancer in the belief that herbs and
anxious, depressed, irritable, angry, or emotionally labile. vitamins would help her disease better than what the
traditional medical community could provide her. She had dexamethasone 16 mg every day (to support her complaints
been living with her illness for more than 5 years and had of somatic pain, assist with nausea and vomiting, and help
allowed her right breast to ulcerate on several occasions, with anorexia and depression), haloperidol 2 to 5 mg every 4
leaving a huge scar and disfigured chest wall, with no to 6 hours for complaints of nausea and vomiting and agita-
resemblance of breast tissue. M.H. was the owner of a natu- tion, and encouraged routine use of her cascara (every 8
ral herbs-and-vitamins business with her husband, who had hours) to aid her constipation. The NP planned a return
died 5 months before from a metastatic malignancy of home visit the next day to evaluate her symptoms. During the
unknown etiology. M.H. had two young adult daughters next visit, the patient and caregiver were both ecstatic about
who both lived out of town. the benet and changes in her condition, and by the follow-
M.H. was enrolled in a local hospice program and was ing Sunday the patient attended religious services, which she
receiving opioids for treatment of severe pain. Her primary had been unable to attend for many weeks.
caregiver (her best friend, and a registered nurse) contacted M.H. continued to do extremely well and began to plan
a local palliative care nurse practitioner (NP) to evaluate her trip to Mexico seeking cure. Because of her physical
her status, believing that she was receiving too many opi- improvement, she did travel to Mexico and returned home
oids, which were contributing to significant side effects such only to become very ill from the treatment she had received.
as sedation, cognitive clouding, constipation, nausea, vomit- The NP was consulted and upon arrival to her home realized
ing, and anorexia. The NP made a home visit to evaluate that M.H. was actively dying and that she was extremely agi-
M.H. and quickly identified her reluctance to use and tated, since she was convinced that it would have been the
embrace the practices offered by Western medicine. There- miracle. Her two daughters had been called from out of
fore, after a long discussion with the patient and her care- town and were present during the home visit, along with the
giver, the NP was allowed to perform a limited physical caregiver and hospice nurse. M.H. was having episodes of
examination. M.H. would not allow the NP to evaluate her insomnia, calling out inappropriately at night, and refusing to
affected breast or palpate for associated lymphadenopathy; stay in bed. Because M.H. had done so well before her travel,
the NP was allowed to obtain vital signs and listen to both many of the medications that she had been taking previously
heart and lung sounds. Because of her distrust of the med- were discontinued. While in the Mexican clinic, she had dis-
ical community, M.H. had limited diagnostics performed to continued all medications except her opioids. The NP noted
a bone scan, which she received from an alternative therapy the apparent changes in the patients cognition and consid-
clinic, and which revealed extensive bone metastasis. The ered hypercalcemia and dehydration, but M.H. refused
NP focused her attention on the medications that the laboratory analysis. She did, however, accept hydration
patient had been prescribed and noted 100 mcg of transder- through hypodermoclysis. The NP also prescribed haloperi-
mal fentanyl, 80 mg of sustained-release morphine every dol 5 mg every 6 hours, discussing its benets with the family,
8 hours, and 30 mg of immediate-release morphine for inci- caregiver, and hospice nurse.
dent pain. She was prescribed lorazepam 1 mg every 4 to The NP was frantically contacted the next day because
6 hours for nausea and vomiting and was using her own M.H., despite her weakness, was extremely agitated and on
preparation of cascara for constipation as needed. M.H. also her hands and knees in her hospital bed, rocking back and
had promethazine 50-mg suppositories in her refrigerator and forth and yelling out at her family. The NP made an emer-
was using them every 6 hours for her nausea and vomiting. gency home visit and inquired about the use and amount of
The NP noted that M.H. required direct control of her haloperidol. She promptly discovered that the hospice nurse
medical management and, despite the inappropriate use of did not feel comfortable using haloperidol and had discour-
medications, noted that it would require deliberate time and aged the family from its use, instead encouraging the use of
energy to gain trust and condence in the NP to better con- lorazepam 2-mg every 4 hours. The NP was faced with a chal-
trol her symptoms. It was also clear to the NP that M.H. was lenging patient and family situationthey apparently had
extremely nervous and agitated about her illness, and during gone online to learn more about haloperidol because the hos-
the home visit, she learned that M.H. was planning to travel pice nurse was not in favor of this intervention, and were
to a clinic in Mexico, where she believed she would be cured reluctant to use it. After a prolonged discussion of the bene-
of her disease. The NP focused on the immediate needs and ts associated with this intervention, haloperidol was initi-
identied the following problems that could promptly be ated subcutaneously at 10 mg until the patient became less
managed: dehydration, constipation, unmanaged pain, agitated (lorazepam was titrated to a low dose 0.5 mg sublin-
anorexia, anxiety, agitation, sedation, and cognitive clouding, gual every 12 hours). M.H. was then able to relax and be
and, despite the patients insistence that she was not placed back in her bed. She kept her eyes closed yet was able
depressed. The NP initiated hydration of 1000 mL of NACL to respond appropriately to questions regarding her comfort.
0.9% IV over 2 hours, discontinued lorazepam and fentanyl, The NP suggested that the caregiver continue with haloperi-
changed her sustained-release opioid schedule to a dol 5-mg subcutaneous injections every 6 hours. This inter-
12-hour schedule (not changing the total daily dose), and vention was successful and M.H. died early the next morning,
discouraged the use of promethazine. The NP, in conversa- peaceful and surrounded by her family.
tion with her collaborative physician, then prescribed o]
o] 9. Turner K, Chye R, Aggarwal G, et al. Dignity in dying: a prelim-

Summary inary study of patients in the last three days of life. J. Palliat Care
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21o] Margaret Anne Lamb
Sexuality
My husband and I have been married for over 50 years. When I was diagnosed with ovarian cancer
9 months ago, it was devastating for both of us. The nights I spent in the hospital after my
exploratory surgery were some of the roughest times in my life. Before then, I could count on one
hand how many nights since our marriage we had not spent together in the same bed. Now it
seems that number is growing exponentially. I wish we could have some time alone together. Now
that the doctors have said the chemotherapy isnt working, there seems to be a steady stream of
people through our house, both night and day. Our three grown children live in the area and often
drop by to see us. Along with them come their spouses and grandchildren. Hospice has started
paying daily visits, and friends and neighbors come by often. I long for just a little privacy with my
husband. Just to hold each other, maybe snuggle and kiss or even just fall asleep in each others arms
would mean the world to me.A patient with end-stage ovarian cancer
Key Points Sexuality is a basic aspect of human life, seen by many as fun-
Sexuality is an integral part of the human experience. It can relieve damental to being human. It is a complex phenomenon that
suffering and diminish the threat to identity that facing a terminal basically comprises the greatest intimacy between two humans.
illness often causes. The ability to give and to receive physical love is very impor-
Health care providers often overlook the sexual needs of those tant for many individuals, even through the trajectory of an
receiving palliative care. incurable illness.1,2 The ability to maintain close sexual rela-
Communication, privacy, and practical solutions to physical tions can be viewed as maintaining an essential part of ones
impediments to sexual functioning can foster sexual health within self. Sexuality can afrm love, relieve stress and anxiety, and
the realm of terminal illness. distract one from the emotional and physical sequelae of an
eventually terminal chronic illness. Sexual expression can fos-
ter hope and accentuate spirituality. Health care providers in
all clinical settings where palliative care is provided can be piv-
otal in facilitating the expression of sexuality in the terminal
stages of life. Holistic palliative care throughout the trajectory
of an incurable illness should include the promotion of sexual
expression and assistance in preventing or minimizing the
negative effects of an illnesss progression on a couples inti-
macy. Sexual partners caring can comfortably include sexual
expression if both parties are interested and able.
o]
Importance of Physical Intimacy
The patient and family are at the center of palliative care. A

patients desire for and interest in maintaining sexual relations is
highly variable. Some may nd expression of physical love an
important aspect of their life right up to death, while others may
relinquish their sexual being early in their end-of-life trajec-
tory. Each individuals identity is inuenced, in part, by his or
her sexual identity. Roles between spouses or sexual partners are
additionally dened by the sexual intimacy between them.
Sexual integrity can be both altered and compromised dur-
ing the course of an incurable disease, deleteriously affecting
both the identity and the role fulllment of the affected
persons. Health care providers should not make assumptions
421
about the level of interest or capacity a couple has for physical among cultural, religious, and spiritual beliefs in relation to
intimacy. sexual intimacy and death.4 Culture often guides interactions
Sexuality goes far beyond sexual intercourse. Sexuality between people, even the mores within sexual interactions.
may encompass physical touch of any kind, as well as experi- Culturally competent health care providers should take into
ences of warmth, tenderness, and the expression of love. The consideration the effect of culture on sexual expression between
importance of physical intimacy vacillates throughout a rela- a couple during palliative care. For example, does the couple
tionship and may be diminished or rekindled by a superim- possess the same cultural identity? If not, are their identities
posed illness. Long-term palliative care providers may see similar in respect to beliefs about intimacy? What are the cou-
sexual desire and expression ebb and ow between a couple ples health, illness, and sexual beliefs and practices? What are
throughout the course of care. The patient may view sexual their customs and beliefs about intimacy, illness, and death?
expression as an afrmation of life, a part of being human, Issues such as personal space, eye contact, touch, and permis-
a means to maintain role relationships, or the expression of sible topics to discuss with health care providers and/or mem-
passion in and for life itself. Some patients may view sexual bers of the opposite sex may inuence ones ability to intercede
expression as an essential aspect of their being, while others within the realm of intimate relations. A cultural assessment is
may see it as ancillary or unimportant. Some patients may key to determining if these factors are an issue. Variations
enter palliative care with an established sexual partner; some in sexual orientation must also be considered within the area
may lose a partner during this period through separation, of cultural competence. The beliefs, actions, and normative
divorce, or widowhood; and others may begin a relationship actions of homosexual and bisexual couples are important
during this time. Some patients may have several sexual part- considerations when providing palliative care to a couple with
ners; some couples may be gay or lesbian; while others, with- alternate sexual expression.57 Gay and lesbian couples may be
out a sexual partner, may gain pleasure by erotic thoughts and offended by the assumption that they are heterosexual. An
masturbation. All of these scenarios are within the realm of example demonstrating the need for acknowledging and
the palliative care providers patient base. Understanding the respecting individual sexuality follows:
various forms of sexual expression and pleasure is paramount
in providing comprehensive care.
A sexual partners interest and ability to maintain sexual 9=
relations throughout the palliative care trajectory can also be case study
affected by many variables. Sexual expression may be impeded A 67-Year-Old Man with Prostate Cancer
by the partners mood state (anxiety, depression, grief, or
A 67-year-old man dying of prostate cancer once stated, I am
guilt), exhaustion from caregiving and assuming multiple
gay but I was married years ago and have three grown chil-
family roles, and misconceptions about sexual appropriate-
dren. I have maintained a close supportive relationship with
ness during palliative care. Anxiety and depression have pro-
my ex-wife and children. However, for the past 17 years Ive
found effects on sexual functioning. Decreases in libido and
been in a homosexual relationship with Todd. We are very
sexual activity result from depressive and anxious states.3 A
close emotionally, spiritually, and physically. We have been
partner may feel that the patient is too ill to engage in sexual
very forthright about our sexual orientation with our family
activity. In turn, the partner may feel remorse or guilt for even
and friends, but it is difcult when Im admitted to the hospi-
thinking about their loved one in a sexual capacity during this
tal. Both my ex-wife and my partner visit me regularly. The
time. Partners may fear that they may injure their loved one
staff acknowledge my ex-wife but seem to think Todd is my
during sexual activity due to their perceived or actual weak-
business partner because I rst introduced him as my part-
ened state or appearance. Furthermore, a partner may have
ner. From the onset, this was an embarassing assumption on
difculty adjusting to the altered physical appearance of the
their part, and one I felt awkward in correcting. I have Todd
patient (cachexia, alopecia, stomatitis, pallor, amputation,
accompany me more often than my ex-wife, but they see him
etc.). The role of caregiver may seem incompatible with that of
as a friend who gives me rides. I know I should just come
sexual partner. As the ill partners health deteriorates, the well
right out and explain the nature of my relationship; the prob-
partner may assume caretaking roles that may seem incompat-
lem is, I see so many different providers. I feel like I would
ible with those of a lover. Furthermore, the myriad of respon-
have to keep going over this again and again. I dont want to
sibilities sequentially assumed by the well partner may leave
be put in this position repeatedly. Todd is very frustrated by
him or her exhausted. This can impede sexual interest and
this misunderstanding, and I hate to see him upset. It is dif-
performance. Finally, the partner may harbor misconceptions
cult enough to be going through the terminal cancer experi-
about sexual relations with a terminally ill partner, including
ence without adding another layer of embarrassment and
diminishing the patients waning energy reserves or causing
confusion.
the illness to progress more rapidly.
o]
Cultural issues may also play a part in the couples willing-
ness or interest in maintaining sexual intimacy during palliative Developmental issues also play a part in the patients ability
care. In Part IX of this book, the international perspective of to maintain intimacy during palliative care. Often, health care
palliative care is addressed. There exists tremendous diversity providers assume sexual abstinence in the elderly and, to some
Sexuality 423
degree, in adolescents and unmarried young adults. However, Necessary steps to maintaining sexual relations include sched-
intimacy may be a vital part of these individuals lives.8 Chrono- uling rest periods when one will not be disturbed; turning
logical age may or may not be a determination of sexual activ- the ringer on the phone off; asking health care providers,
ity. For underage patients, parental inuence may interfere friends, and clergy to call before visiting; and having family
with the ability to express physical love. Likewise, the elderly members allow periods of uninterrupted time.
may be inhibited by perceived societal values and judgments
about their sexuality. Maintaining an open, nonjudgmental
9=
approach to patients of all ages, sexual orientations, and mar-
case study
ital status when inquiring about intimacy aspects will foster
A 26-Year-Old Woman with Hodgkins Disease
trust and communication.
I am a single woman but have been in a serious relationship
for the past 2 years. My boyfriend has been very understand-
o] ing and supportive during my diagnosis and treatment for
Privacy Hodgkins disease. Sex is a very important part of our rela-
tionship. We have lived together for the past year. I was
One of the main external obstacles to maintaining intimate admitted to the hospital several days ago. The nurses, doctors,
relations during palliative care is the lack of privacy. In Part VI and others come and go all day long. I wanted a private room
of this book, the various settings in which end-of-life care may but really couldnt afford the extra expense. One night, just
take place and the concomitant issues raised within each set- before visiting hours were over, we decided to try to have a
ting are addressed. In the acute care setting, privacy is often quickie. We thought my roommate was asleep and tried to
difcult to achieve. However, this obstacle can be removed or be very quiet. We pulled the curtains around the bed and
minimized by recognizing the need for intimacy and making turned off the lights. All of a sudden, the light went on and
arrangements to ensure quiet, uninterrupted time for couples. the curtain was pulled back. Come to nd out my roommate
Private rooms are, of course, ideal. However, if this is not pos- heard the noise I was making and thought I was having
sible, arranging for roommates and visitors to leave for peri- difculty breathing. She had put on her call light for the
ods of time is necessary. Furthermore, a sign should be posted nurse. We were so embarrassed. My boyfriend left quickly
on the door that alerts health care providers, staff, and visitors and Im afraid I wont see him again. I think this is just too
that privacy is required. Finally, many rooms in the acute care much for a 28-year-old guy.
setting have windows as opposed to walls, requiring the use of o]
blinds and/or curtains to assure privacy. The nurse should
offer such strategies rather than expecting patients to suggest
privacy measures. o]
Similar issues may arise in the long-term care environment. Sexual Assessment
If privacy is a scarce commodity, assisting couples to maintain
intimate relations as desired is crucial in providing holistic The promotion or restoration of sexual health begins with a
care. Nurses in long-term care can initiate strategies similar to sexual assessment. The assessment should include the patient
those enumerated for the acute care setting. Furthermore, this as well as his or her partner. Securing permission to include
issue may be even more paramount to the patient because the sexual partner is necessary. For the nurse to perform this
often the stay in long-term care is quite extended. In both the assessment, she or he must be comfortable with the topic of
acute care and long-term care settings, nurses can play a vital sexuality. Comfort with ones sexuality conveys comfort to
role in setting policy to allow for the expression of intimacy. others. Additionally, the nurses values, beliefs, and attitudes
Home care may present an array of different obstacles for regarding sexuality greatly inuence the capacity to discuss
maintaining intimate relations. The ongoing presence of a these issues in a nonjudgmental way. Perceived insufcient
health care provider other than the sexual partner is such an knowledge on the part of the health care provider is often an
obstacle. Furthermore, the home setting is often interrupted obstacle to frank sexual discussions. Additional sexual educa-
by professional visits as well as visits from family, friends, and tion and consistent assessment and counseling approaches will
clergy. These visits may be unplanned or unannounced. The allay this discomfort. Education can be gained informally via
telephone itself may be an unwelcome interruption. Further- discussions with colleagues and through consultation with
more, the patient may have been moved from a more private, experts in the area of human sexuality. Formal training is gained
bedroom setting to a more convenient central location, such as through in-service education offerings, workshops, and sexual-
a den or family room, to aid care giving and to maintain an attitude reassessment programs. Knowledge can also be fos-
integral role in family life. However, this move does not foster tered by keeping abreast of new developments within the eld
the privacy usually sought for intimate activity. There may not by attending conferences and reviewing journals and profes-
be a door to close. Alternately, proximity of the patients bed to sional information via the Internet.
the main rooms of the house may inhibit a couples intimate Assessment of sexuality begins with a sexual history and is
activities. Negotiating for private time is often necessary. then supplemented by data regarding the patient and partners
physical health as it inuences intimacy, psychological seque- not acceptable regarding potential solutions is part of the
lae of the chronic illness, sociocultural inuences, and possible logical next step in sexual assessment.
environmental issues. Since sexual health is viewed as a relative Finally, documentation in the patients chart should reect
matter, it is essential to determine if the couple is satised with the ndings of the sexual assessment. Many institutions have a
their current level of sexual functioning. Celibacy, for exam- section for sexual assessment embedded within their intake
ple, may have been present in the relationship for years. How- form. This can be completed and more thorough notes added
ever, the trajectory of palliative care may have forced celibacy to the narrative section on the chart. Findings, suggestions for
on an otherwise sexually active couple. Determining the cou- remediation, and desired outcomes should be documented.
ples need for interventions and assistance in this area is key. This will prevent duplication of efforts, communication within
The health care provider has many interventions available to the health care team, and continuity of care within the realm
prevent or minimize the untoward effects that palliative care of sexual health.
may impose on intimacy.
Obtaining a sexual history and performing a subsequent
sexual assessment can be augmented using several communi- o]
cation techniquesassuring privacy and condentiality; Interventions to Augment Sexual Health
allowing for ample, uninterrupted time; and maintaining a in End-of-Life Care
nonjudgmental attitude. Addressing the topic of sexuality
early in the relationship with a palliative care patient legit- The specic sexual needs and concerns of the patient and cou-
imizes the issue of intimacy. It delivers the message that this ple determine the approach and type of intervention. The inter-
is an appropriate topic for concern within the professional vention can address current needs or focus on potential future
relationship, and is often met with relief on the part of the needs in the form of anticipatory guidance. Although dated,
patient and couple. Often, sexuality concerns are present but the P-LI-SS-IT model developed by Annon9 remains a corner-
unvoiced. stone in sexual rehabilitation. The assessment phase, previ-
Incorporating several techniques of therapeutic communi- ously outlined, comprises the P, or permission, phase of this
cation enhances the interview. These techniques include intervention model. Permission simply refers to the openness
asking open-ended questions (Some people who have an about discussing sexual concerns. In assessing sexual health,
incurable illness are frustrated by their lack of private time the health care provider has begun intervening in the realm of
with their spouse/sexual partner. How is this experience for sexuality. By initiating a discussion about the effects that pal-
you?); using questions that refer to frequency as opposed to liative care may have on an individuals or couples intimate
occurrence (How often do you have intimate relations with relations, one legitimizes these concerns.
your wife/husband/partner? as opposed to Do you have inti- Limited information regarding actual or potential problems
mate relations with your wife/husband/partner?); and is addressed once the assessment phase of the intervention is
unloading the question (Some couples enjoy oral sex on a complete. This is the LI of the acronym. Specic information
regular basis, while others seldom or never have oral sex. How and suggestions can then be given to assist the patient or cou-
often do you engage in oral sex?). This last technique legit- ple with adapting to changes in intimacy brought on by incur-
imizes the activity and allows the patient to feel safe in able illness or end-of-life care. Questions can be answered,
responding to the question in a variety of ways. what is normal can be acknowledged, and myths and miscon-
Gender and age may also play a part in the patients com- ceptions can be dispelled. False assumptions about intimacy
fort with sexual discussions. An adolescent boy may feel more during palliative care can be addressed, and anticipatory guid-
comfortable discussing sexual concerns with a male health ance regarding what to expect as a result of advancing disease
care provider, whereas an elderly woman may prefer to discuss and palliative treatment is included in this discussion.
sexual issues with a woman closer to her own age. Assessment Specic suggestions (SS) go beyond limited information,
of these factors may include statements like the following: and counseling is employed to rectify specic problems or to
Many young men have questions about sexuality and the effect attain a mutually stated goal. A stated goal is key to this phase
their illness may have on sexual functioning. This is something because the resultant plan will aim at attaining that outcome.
we can discuss or, if youd be more comfortable, I could have Specic suggestions usually pertain to communication, symp-
one of the male nurses talk to you about this. Which would tom management, and alternate physical expression. Fostering
you prefer? open communication between the couple about sexuality in
If the sexual history reveals a specic sexual problem, a end-of-life care is essential. Candid discussions regarding their
more in-depth assessment is warranted. This would include emotional response to this phase of their relationship, their
the onset and course of the problem, the patients or couples fears and concerns, and their hopes and desires are included in
thoughts about what caused the problem, any solutions that these interactions. Symptom management is essential to opti-
have been attempted, and potential solutions and their accept- mizing sexual expression. The following section of this chapter
ability to the patient/couple. For example, use of a vibrator in addresses specic symptoms, their effect on the expression
the case of male impotence may be entirely acceptable to some of intimacy, and strategies to effectively manage them while
couples but abhorrent to others. Determining what is and is not compounding sexual problems. Alternate expressions of
Sexuality 425
physical intimacy may be necessary if sexual disruption is due consideration. Sexual activity in the morning upon awaken-
to organic changes. If intercourse is difcult, painful, or imposing may be preferable over relations at the end of a long day.
sible, the couple may have to expand their sexual repertoire. A Planning for intimate time rather than spontaneity can be a
thorough discussion of the couples values, attitudes, and pref- benecial strategy.
erences should be done before suggesting alternatives. Using
language that is understandable to the patient/partner is essen- Pain
tial. However, the use of slang or street language may be unac-
ceptable to the health care provider. Therefore, dening terms Sexual arousal and performance are often impaired by the
early in the discussion will alleviate this potential problem. presence of pain. Additionally, the use of pain medication
There are many ways of giving and receiving sexual (especially opiates) can interfere with sexual arousal.10 In
pleasuregenital intercourse is only one way of expressing Chapters 5 and 6, the issues of pain assessment and manage-
physical love. Other suggestions include hugging, massage, ment are discussed in a comprehensive manner. The goal of
fondling, caressing, cuddling, kissing, hand-holding, and mas- pain therapy is to alleviate or minimize discomfort. However,
turbation, either mutually or singularly. Sexual gratication in attaining that goal, sexual responsiveness (i.e., libido or
may be derived from manual, oral, and digital stimulation. erectile function) may be hindered. Temporarily adjusting pain
Intrathigh, anal, and intramammary intercourse are also medications or experimenting with complementary methods
options if the female partner is unable to continue vaginal of pain management should be explored. For example, using
penetration. relaxation techniques before intimacy may be helpful. Roman-
Intensive therapy (IT), the last stage of this model, is not tic music may decrease discomfort through distraction and
usually suggested in end-of-life care. This therapy is generally relaxation, while enhancing sexual interest. Sexual activity
for couples who have long-standing sexual or marital prob- itself can be viewed as a form of distraction and subsequent
lems. The feasibility of this type of therapy during palliative relaxation. The couple should be encouraged to explore posi-
care for a terminal illness is questionable. tions that offer the most comfort. Traditional positions may be
abandoned for more comfortable ones, such as sitting in a
chair or a side-lying position. Pillows can be used to support
o] painful limbs or to maintain certain positions. A warm bath or
Management of Alterations in Sexual Functioning shower before sexual activity may help pain relief and be seen
During End-of-Life Care as preparatory to intimate relations. Massage can be used as
both an arousal technique and a therapeutic strategy for min-
Terminal illness and end-of-life care can interfere with sexual imizing discomfort. Finally, suggesting the exploration of
functioning in many ways. All of the following can impact sex- alternate ways of expressing tenderness and sexual gratica-
ual functioning: physiological changes; tissue damage; other tion may be necessary if the couples traditional intimacy
organic manifestations of the disease; attempts to palliate the repertoire is not feasible due to discomfort.
symptoms of advancing disease, such as fatigue, pain, nausea
and vomiting; and psychological sequelae such as anxiety, Nausea and Vomiting
depression, and body-image changes. Environmental issues
that may affect sexual expression were addressed in the previ- Nausea and vomiting are common during the palliative care
ous section. Management of the patients biological and trajectory and negatively impact sexual functioning. Chapter 9
psychological sequelae is addressed below. discusses the etiology and treatment of these symptoms. There
are many medications that suppress nausea; however, they
Fatigue may interfere with sexual functioning due to their sedative
effects.10 If the patient complains of sexual difculties second-
Fatigue may be due to an array of factors. In Chapter 7, ary to treatment for nausea and vomiting, an assessment of the
the etiology and management of fatigue were thoroughly prescribed antiemetics may shed light on a pharmacological
addressed. Fatigue may render a patient unable to perform culprit. Using alternate nonpharmacological methods to con-
sexually. If fatigue is identied as a factor in the patients abil- trol nausea and vomiting or changing to another antiemetic
ity to initiate or maintain sexual arousal, several strategies may be warranted. Such strategies include eating small and
may be suggested to diminish these untoward effects. Mini- frequent meals, serving foods at room temperature, avoiding
mizing exertion during intimate relations may be necessary. spicy foods, assuring a well-ventilated dining area, and using
Providing time for rest before and after sexual relations is relaxation and distraction techniques. Providing fresh air
often a sufcient strategy to overcome the detrimental effects through an open window in the bedroom, for example, may
of fatigue. Likewise, avoiding the stress of a heavy meal, alco- decrease noxious olfactory stimuli. As with fatigue, timing
hol consumption, or extremes in temperature may be helpful. may be an important consideration for intimate relations. If
Experimenting with positions that require minimal patient the patient/couple notes that nausea is more prevalent during
exertion (male-patient, female astride; female-patient, male a certain time of the day, planning for intimacy at alternate
astride) is often helpful. Finally, timing should be taken into times may circumvent this problem.
Neutropenia and Thrombocytopenia Mobility and Range of Motion
Neutropenia and thrombocytopenia, per se, do not necessarily Mobility issues and compromised range of motion may inter-
interfere with intimacy, but they do pose some potential prob- fere with sexual expression. Similar to issues related to fatigue,
lems. Sexual intimacy during neutropenic phases may jeopard- a decrease in mobility can inhibit a couples customary means
ize the compromised patient. Severe neutropenia predisposes a of expressing physical love. A compromise in range of motion
patient to infection. Close physical contact may be inadvisable can result in a similar dilemma. For example, a female patient
if the sexual partner has a communicable disease, such as an may no longer be able to position herself in such a way as to
upper respiratory infection or inuenza. Specic sexual prac- allow penile penetration from above due to hip or back restric-
tices, such as anal intercourse, are prohibited during neutro- tions. Likewise, a male patient may have knee or back restric-
penic states due to the likelihood of subsequent infection. The tions that make it impossible for him to be astride his partner.
absolute neutrophil count, if available, is a good indicator of Regardless of the exact nature of the range-of-motion/
neutropenic status and associated risk for infection. Patient mobility concern, several suggestions can be offered. Experi-
and partner education about the risks associated with neu- menting with alternate positions, employing relaxation tech-
tropenia is essential. niques before sexual play, massage, warm baths, and exploring
Thrombocytopenia and the associated risk of bleeding, acceptable alternative methods of expressing physical inti-
bruising, or hemorrhage should be considered when counsel- macy should be encouraged.
ing a couple about intimacy issues. Again, anal intercourse is
contraindicated due to risk for bleeding. Likewise, vigorous Erectile Dysfunction
genital intercourse may cause vaginal bleeding. Indeed, even
forceful or energetic hugging, massage, or kissing may cause Erectile dysfunction can be caused by physiological, psycho-
bruising or bleeding. Preventative suggestions might include logical, and emotional factors. These factors include vascular,
such strategies as gentle lovemaking, with minimal pressure on endocrine, and neurological causes; chronic diseases, such as
the thrombocytopenic patient, or having the patient assume renal failure and diabetes; and iatrogenic factors, such as sur-
the dominant position to control force and pressure. gery and medications. Surgical severing of the small nerve
branches essential for erection is often the untoward effect of
Dyspnea radical pelvic surgery, radical prostatectomy, and aortoiliac
surgery.1113 Vascular and neurological causes may not be
Dyspnea is an extremely distressing occurrence in the end-of- reversible; however, endocrine causes may be minimized. For
life trajectory. In Chapter 13, the management of this symp- example, the use of estrogen in advanced prostate cancer may
tom is reviewed. Dyspnea, or even the fear of initiating be terminated in palliative care, thus allowing for the return of
dyspnea, can impair sexual functioning. General strategies can erectile function. Many medications decrease desire and erec-
be employed to minimize dyspnea during sexual play. These tile capacity in men. The most common offenders are antihy-
can include using a waterbed to accentuate physical move- pertensives, antidepressants, antihistamines, antispasmodics,
ments, raising the dyspneic patients head and shoulders to sedatives or tranquilizers, barbiturates, sex hormone prepara-
facilitate oxygenation, using supplementary oxygen and/or tions, narcotics, and psychoactive drugs.1012 Often, these
inhalers before and during sexual activity, performing pul- medications cannot be discontinued to permit the return of
monary hygiene measures before intimacy, encouraging erectile function. For those patients, penile implants may be
slower movements to conserve energy, and modifying sexual possible. The use of sildenal (Viagra), vardenal HCl (Levi-
activity to allow for enjoyment and respiratory comfort. tra), tadalal (Cialis), and yohimbine (Yohimbine) have not
been researched in the area of terminal care. These medica-
Neuropathies tions are classied as selective enzyme inhibitors. They relax
smooth muscle, increase blood ow, and facilitate erection.10 If
Neuropathies can be a result of disease progression or compli- a vascular component is part of the underlying erectile dys-
cation of prior aggressive treatment. Neuromuscular distur- function, the use of one of these medications may correct
bances are discussed in depth in Chapter 18. Neuropathies can the problem. Certainly, contraindications such as underlying
manifest as pain, paresthesia, and/or weakness. Depending on heart disease and other current medications should be taken
the location and severity of the neuropathy, sexual functioning into consideration. Otherwise, digital or oral stimulation of
can be altered or completely suppressed. Management or the female partner may be suggested as well as use of a vibra-
diminution of the neuropathy may or may not be feasible. If tor, if that is acceptable.
not, creative ways to evade the negative sequelae of this occur-
rence are necessary. Such strategies might include creative Dyspareunia
positioning, use of pillows to support affected body parts, or
alternate ways of expressing physical love. The distraction of Dyspareunia, like erectile dysfunction, can be caused by phys-
intimacy may temporarily minimize the perception of the iological, psychological, and emotional factors. These factors
neuropathy. include vascular, endocrine, and neurological causes as well as
Sexuality 427
iatrogenic factors such as surgery and medications.11,12,14,15 Courtship, and the Single Ostomate by D.P. Binder, Sex and
Again, while vascular and neurological causes may not be the Female Ostomate by G.L. Dickman and C.A. Livingston,
reversible, endocrine causes may be minimized. For example, Sex and the Male Ostomate by E. Gambrell, and Gay and Les-
the use of estrogen replacement therapy (ERT), vaginal estro- bian Ostomates and Their Caregiver by the Gay Lesbian Organ-
gen creams, or water-soluble lubricants may be helpful in ization.
diminishing vaginal dryness, which can cause painful inter-
course. Gynecological surgery and pelvic irradiation may Anxiety and Depression
result in physiological changes that prevent comfortable inter-
course. Postirradiation changes, such as vaginal shortening, Anxiety and depression related to the incurable and terminal
thickening, and narrowing, may result in severe dyspareunia. aspects of the disease may interfere with sexual desire and
For women, as with male patients, many medications decrease response. As two of the most common affective disorders dur-
desire and function. These drugs include antihypertensives, ing end-of-life care, they are thoroughly discussed in Chapter
antidepressants, antihistamines, antispasmodics, sedatives or 19. Both anxiety and depression have profound effects on sex-
tranquilizers, barbiturates, sex hormone preparations, nar- ual functioning.3 Decreases in sexual desire, libido, and activ-
cotics, and psychoactive drugs.1013 Often, these medications ity are common sequelae of these affective disorders. However,
cannot be discontinued to permit the return of sexual func- some interventions, especially pharmacological management,
tion. For those patients, digital or oral stimulation of the male can further compromise sexual functioning. A thorough assess-
partner may be suggested, if acceptable. Additionally, intrathigh ment of the patients psychological state and an evaluation of
and intramammary penetration may be suggested to women the medications currently prescribed for this condition may
who nd vaginal intercourse too painful. reveal the source of the problem. Anxiolytics such as lorazepam
and alprazolam are commonly prescribed. Antidepressants,
Body Image Disturbances such as tricyclic antidepressants, selective serotonin reuptake
inhibitors (SSRIs), and monoamine oxidase inhibitors, are
Sexuality is closely related to how one views oneself in the often prescribed. All of these have the potential for interfering
physical sense. An incurable illness and concomitant end-of- with sexual functioning.10 Unfortunately, one may end up hav-
life care can alter ones physical appearance. Additionally, past ing to choose psychological comfort and compromised inti-
treatments for disease often irrevocably alter body appearance macy. Alternately, the health care provider may suggest a
and function. Issues such as alopecia, weight loss, cachexia, the nonpharmacological approach to the management of these
presence of a stoma, or amputation of a body part, to name a affective disorders, especially if the disorder is mild. Relaxation
few, can result in feelings of sexual inadequacy and/or disin- techniques, imagery, and biofeedback may lower anxiety to a
terest. End-of-life care can focus on the identication and tolerable level. Additionally, the release of sexual tension may
remediation of issues related to body image changes. Although itself resolve anxiety. If desire is maintained and function
an altered appearance may be permanent, counseling and alone is compromised for male patients, the couple may
behavior modication, as well as specic suggestions to mini- explore alternate ways of pleasing each other. For female
mize or mask these appearances, can improve body image to a patients, use of water-soluble lubricants can offset the interfer-
level compatible with feelings of sexual adequacy and empow- ence with arousal if interest remains intact. Once again, open
erment. communication between both the couple and the health care
The use of a wig, scarf, or headbands can mask alopecia. provider allows for frank discussions and the presentation
Some patients, rather than try to conceal hair loss, choose to of possible alternatives to expressing physical affection during
emphasize it by shaving their heads. Weight loss and cachexia palliative care.
can be masked through clothing and the creative use of
padding. The presence of an ostomy can signicantly alter
body image and negatively affect sexual functioning. Specic o]
interventions for minimizing the effect that the presence of an Summary
ostomy has on sexual functioning depend, in part, on the par-
ticular type of ostomy. Some patients are continent, while oth- Incurable illness and end-of-life care may result in compro-
ers need an appliance attached at all times. If the patient has a mising a couples intimacy. To prevent or minimize this, health
continent ostomy, timing sexual activity can allow for removal care providers should assume a leading role in the assessment
of the appliance and covering the stoma. If the ostomy appli- and remediation of potential or identied alterations in sexual
ance cannot be safely removed, the patient should be taught to functioning. Clearly, not all couples will nd intimacy a con-
empty the appliance before intimate relations and to use a cern at this point of their life together. However, if intimacy is
cover or body stocking to conceal the appliance. Alternate desired, all attempts should be made to facilitate this impor-
positions may also be considered, and in the event of a leak, tant aspect of life. Many nd being physically close to the
sexual activity can continue in the shower. The United Ostomy one they love life-afrming and comforting. As patients draw
Association (http://www.uoa.org) publishes four patient close to the end of life, they remain human and holistic. Their
information booklets on sexuality and the ostomate: Sex, needs, hopes, and concerns remain as intact as all others. If
those needs and hopes include maintaining intimacy with a 5. Lipson JG, Dibble SL, Minarik PA. Culture and Nursing Care.
partner, this should be included in the assessment and provi- San Francisco: UCSF Nursing Press, 1996.
sion of care. The health care providers offer of information 6. Stein GL, Bonuck KA. Attitudes on end-of-life care and advance
and support can make a signicant difference in a couples care planning in the lesbian and gay community. J Palliative Med
ability to adjust to the changes in intimacy related to end-of- 2001;4:173190.
7. Saulnier CF. Deciding who to see: lesbians discuss their prefer-
life care.
ences in health and mental health care providers. Soc Work
The realm of sexual functioning and intimacy during end-
2002;47:355365.
of-life care remains an area in which further research is war- 8. Hajjar RR, Kamel HK. Sexuality in the nursing home: attitudes and
ranted. Much of the information presented in this chapter barriers to sexual expression. J Am Med Dir Assoc 2003;3:152156.
resulted from clinical practice and inferences made from 9. Annon JS. The Behavioral Treatment of Sexual Problems. Hon-
other, tangentially related research. Incorporating intimacy olulu: Mercantile Printing, 1974.
research into end-of-life care research is a natural and much- 10. Skidmore-Roth L. Mosbys 2004 Nursing Drug Reference.
needed marriage. Philadelphia: Mosby, 2004.
11. LeMome P, Burke KM. Medical Surgical Nursing: Critical Think-
ing in Patient Care, 2nd ed. Menlo Park, CA: Addison-Wesley,
2000.
references 12. Lewis SM, Heitkemper MM, Dirksen SF (eds). Medical Surgical
Nursing: Assessment and Management of Clinical Problems, 6th
1. Hordern AJ, Currow DC. A patient-centered approach to sexual- ed. Philadelphia: Mosby, 2003.
ity in the face of life-limiting illness. Med J Aust 2003;179(Suppl 13. Rondorf-Klym LM. Quality of life after radical prostatectomy.
6):S8S11. Oncol Nurs Forum 2003;30:2432.
2. Rice A. Sexuality in cancer and palliative care: effects of disease 14. Sormanti M, Kayser K. Partner support and changes in relation-
and treatment. Int J Palliative Nurs 2000;6:392397. ships during life-threatening illness: womens perspectives.
3. Varcarolis E. Foundations of Psychiatric Mental Health Nursing, J Psychosoc Oncol 2000; 18:4566.
4th ed. Philadelphia: WB Saunders, 2002. 15. Ekwall E, Ternestedt B, Sorbe B. Important aspects of health care
4. Laqueur T. Making Sex: Body and Gender from the Greeks to for women with gynecologic cancer. Oncol Nurs Forum 2003;
Freud. Cambridge, MA: Harvard University Press, 2000. 30:313319.
22o] Patrick J. Coyne, Laurie Lyckholm, and Thomas J. Smith
Clinical Interventions, Economic Outcomes,

and Palliative Care
Would you tell me please which way I have to go from here?
That depends a good deal on where you want to get to.
Lewis Carroll, Alices Adventures in Wonderland.
Key Points o]
The scope of nursing and nursing education has expanded Why Are Economic Outcomes Important?
to include multiple domains, many of which overlap other
disciplines such as wellness, disease prevention, and health Health care spending and health care quality are major prob-
services administration. lems in the United States, with health care spending reaching
Economic outcome is an area in which nursing plays an essential $1.6 trillion, a number expected to triple in the next 10 years.
role in providing efcient, cost-effective, and appropriate In 2002, there was an annual increase of 9.3%. Drug costs and
palliative care. rising hospital expenses fueled much of this spending.1 The
Health services research regarding economic outcomes, while financial costs of cancer are great both for the individual and
limited, may help create a framework for addressing how to make for society as a whole. The economic burden is likely to in-
palliative care available to everyone in an ethical, economic, and crease as the population ages, the absolute number of people
effective manner. treated for cancer increases, and newer technologies and
expensive treatments are adopted as standards of care.2
Already in the year 2004, the National Institutes of Health
estimated overall annual costs for cancer to be $189.8 billion,
with direct medical costs totaling $69.4 million, and indirect
costs from lost productivity to be $16.9 billion due to illness
and $103.5 billion due to premature death.3 Lack of health
insurance and other barriers to health care prevent many
Americans from receiving optimal medical care. According
to the 2003 National Health Interview Survey data, nearly
27% of Americans between the ages of 18 and 24 and 20% of
Americans between the ages of 25 and 44 reported not having
a regular source of health care.4 Additionally, 17% of Ameri-
cans under age 65 have no health insurance, and about one
third of older individuals only have Medicare coverage.4
Nearly one third of all Medicare spending is on patients in
their last year of life5,6; we are spending a significant amount
on high-technology care for the elderly, and those funds can-
not be spent on preventive services or chronic disease condi-
tions for the same population.7 The pressure on health care
funds will increase due to heightened demands for care from
an educated elderly population, more elderly long-term sur-
vivors, new and expensive technologies, new diseases, and
demands for cost cutting. All health care interventions,
regardless of intention, active therapy, or palliative care, are
delivered at a price. Cost effectiveness of interventions must
429
Table 221
Types of Needed Health and Service Research Studies
Type of Study Question Posed
Policy analysis What outcomes justify treatment? Who should

make those decisions?
Type of care: chemotherapy vs. best Does chemotherapy save money compared to best
or other types of supportive care supportive care when all costs are considered?
Site of service Is home site more effective and less costly
compared to hospital?
Structural and process changes in care Can costs be reduced by changing how care is
delivered, e.g., by inpatient hospice or at home?
Hospice vs. nonhospice Does hospice improve quality of life and/or reduce
costs of care?
Advance directives and do-not- Do advance directives inuence medical
resuscitate orders treatment decisions and/or change costs?
Nursing ability to impact cost Can skilled palliative care nurses effectively palliate
at end of life patients and effect a savings of resources?
be continually assessed; less is not necessarily better, but ovarian cancer surgery performed by specialist gynecological
whatever is spent must maximize the resources available.8 oncologists rather than general surgeons or gynecologists16;
The question of when, where, and why to use high-tech and (4) better survival for prostate cancer patients at high-
interventions falls into the middle of this debate and must be volume centers.17 Until the science of palliative care becomes
carefully explored. better known, one can reasonably speculate that palliative
Care is not optimal for all patients, and quality of palliative care will improve in high-volume or specialized centers.18
care must improve. The Study to Understand Prognoses and Clearly, there is a need for additional research to address
Preferences for Outcomes and Risks of Treatment (SUP- these questions of quality care. We have identied some
PORT) showed that half of all dying patients had unnecessary important questions about economic outcomes and palliative
pain and suffering in their nal days of life while in the hospi- care, which are listed in Tables 221 and 222.
tal.9 Cleeland and colleagues found that nearly half of all
patients suffer unnecessary pain, even when cared for by
oncologists.10 o]
The whole neglected issue of cancer care quality is now The Ethics of Adding Economic Outcomes
under discussion, with active efforts to improve it.11 The
relationship of volume to quality is striking12: (1) a signicant In the modern arena of health care, nonmedical concerns, such
(5% to 10%) overall survival advantage at a breast cancer spe- as cost control, oversight and audit, utilization review, and
cialty center versus community hospitals13,14; (2) better sur- decreasing liability risk, have assumed a signicant role. Some
vival for testicular cancer patients treated at specialist authorities have argued that such management tools are not
centers15; (3) better survival and fewer complications for inherently unethical.19 Cost control is certainly not so, but
should be considered secondary to the goal of quality care.
The goals of nursing and medicine are grounded in a tradition
of promoting health and providing comfort and relief of suf-
Table 222 fering in a just manner. Cost control through aggressive dis-
Outcomes that Justify a Medical Intervention ease management, or critical paths, may actually promote
Justify Do Not Justify these goals by making more and/or better care available if we
avoid the current systems that reward/pay for hi-tech inter-
Improved overall survival False hope that survival ventions but fail to reimburse effective low-tech treatments.20
will be improved
An example of this discrepancy is that insurance will reim-
Improved disease-free survival burse a patient-controlled analgesia pump but will not reim-
Improved quality of life burse oral analgesics.
Less toxicity Cost control must be differentiated from prot motivation
Improved cost effectiveness Cost alone and entrepreneurship, which have not traditionally been con-
sidered the goals of medicine. These activities in the context of
Clinical Interventions, Economic Outcomes, and Palliative Care 431
health care are unethical in that they may make medical care bypass, and hemodialysis, based on the theory of equality of
more expensive and difcult to access, especially for those who opportunity according to ability to benet from such proce-
are socially disadvantaged. They may also create further dures.24 However, palliative care is different in that age does
conicts of interest in already precarious duciary relation- not determine whether a person stands to benet. In this
ships between clinicians and their patients. A code of ethics circumstance, the ethic of distributive justice supports the
that covers all professionals, rather than medicine alone, might concept that medical and social needs dictate who stands to
be useful.21 benet most from palliative care.
Tolerance of suboptimal care is an equally important ethi- Daniels25 reported that it does not seem reasonable to pos-
cal issue and one that is rarely mentioned in either ethical or tulate that the medical needs of the elderly terminally ill are
management studies. Studies such as SUPPORT have revealed any less than those of younger patients, and indeed they may
that many aspects of end-of-life care are still suboptimal. The be greater because of multiple additional pathologies associ-
national dialogue about physician-assisted suicide might also ated with aging. Sidgwicks26 argument that each moment of
indicate that end-of-life care has not been optimized, thus life is equally valuable no matter when it occurs is most
resulting in despair and frustration so signicant as to urge poignant in the instance of palliative care. This would also
dying persons to consider suicide to end their suffering. If pal- apply to extending palliative care to neonates expected to live
liative care can be improved and/or made less costly without only a short time after birth.
sacricing quality, it must be done in the service of promoting Patients may view benet and toxicity in ways very different
the values of benecence, compassion, and respect for auton- from their health care providers and from those who are well.
omy. Palliative care has emerged as a national movement, with According to a recent study, dying patients would undergo
the advent of several important initiatives (e.g., Project on almost any treatment toxicity for a 1% chance of short-term
Death in America, Oncology Nursing Society efforts, Educa- survival, while their doctors and nurses would not; and these
tion for Physicians on End-of-Life Care by the American Med- decisions were not changed after patients experienced the toxi-
ical Association, established programs such as the Center to city of treatment.27 A study of palliative radiotherapy for brain
Improve Care of the Dying at George Washington University), tumor patients showed little survival, modest functional bene-
plus the development of palliative care programs all over the t, and a substantial decrease in intellectual function; but most
world. The Healthcare Finance Administrations approval of patients and families would still want it.28,29 This is a complex
an International Classication of Diseases-9 code for palliative appraisal that needs further study.
care was hoped by some to indicate its signicance in the
health care system.21 The economic outcomes are not known
and may be difcult to measure, but regardless, the ethical o]
impetus to correct the deciency is critical. What Is the Right Amount to Spend on Health Care?
Another serious ethical question is the ownership of
disease-management models. Should management tools that How much to spend on health care cannot be determined
improve care be protected or available to the general public? If without knowing the economic and cultural particulars of a
a tool that improved care at a markedly lower cost were devel- country or even a health system. Blanket statements about a
oped, one could argue that it should be made available for percentage of the gross national product (GNP) may be mis-
widespread distribution, much like polio vaccine. Another leading if a comparison country spends a higher percentage on
example would be an algorithm that eased dyspnea rapidly in social net programs but less on direct medical care costs. Com-
end-stage disease, with minimal economic impact and no ments about health care spending as a percent of the GNP may
requirement for technology. also reect opinions about alternative uses; for example, We
Some have argued that budgets should not be balanced should stop spending money on defense and spend it on health
with penalty to one group, such as the elderly or those on care. In the United States, the amount spent on education has
Medicare.22,23 Many health care goods are rationed justly (ben- declined from 6% to 5% of the GNP, while the amount spent
et versus risk) according to age, such as transplants, coronary on health care (especially for the elderly) has risen from 6% to
about 14%.30 Clearly, in all countries, the entire system of health
Figure 221. Present allocation world-

wide of cancer resources. Palliative care
must receive more of these resources.
Source: World Health Organization (1990),
reference 91. Reproduced by permission
of WHO.
care needs to be explored with policies designed to ensure that Current allocation of resources greatly favors curative care
palliative care is a component of the overall health care system with less support for palliative care. As Figures 222 and 223
(Figure 22-1).31 illustrate, WHO advocates a more equal distribution of
resources in developed countries and an even greater support
of palliative care in developing countries, where most of the
o] population will experience advanced disease rather than cure
Should There Be Special Economic or Policy or long-term survival.
Considerations for Palliative Care? One approach to funding treatments has been based on
cost-effectiveness ratios.34 Laupacis and colleagues34 in
We believe that, in general, there should be no special consid- Canada proposed explicit funding criteria: (1) treatments that
erations for palliative care. Most health care policy analysts work better and are less expensive should be adopted; (2)
and economists would argue that all care should be evaluated treatments with cost-effectiveness ratios of less than
equally. For example, a therapy that gains 1 week for 52 patients C$20,000 per additional life year (LY) gained should be
should be valued as much as a therapy of equivalent cost that accepted, with the recognition that they cost additional
gains 52 weeks for 1 patient.32 Recently, some health econo- resources; (3) treatments with cost-effectiveness ratios of
mists have argued that time given to those who are most at risk $20,000 to C$100,000/LY should be examined on a case-by-
should be valued more (e.g., time added in the last 6 months case basis with caution; (4) and treatments with cost-
of life should be given triple value).33 The analogy was made to effectiveness ratios of greater than C$100,000/LY should be
food and hunger: a sandwich given to a starving person would rejected. These criteria are valid in a system where all
be of more intrinsic value than one given to a person who resources are shared equally; it is not clear how they apply to
already had many sandwiches. Such discussions, while inter- other health care systems, where resources may not be
esting, are outside the scope of this chapter, but many of the shared.35 Alternatively, patients might be allowed to purchase
ethical concepts applied to these global discussions have rele- additional insurance for expensive treatments or pay for them
vance to decisions about palliative care. out of pocket. In the United States, there has been no accepted
The World Health Organization (WHO) has listed priori- answer, but most authorities have agreed on an implicitly
ties for health care. In cancer, palliative care has always been dened benchmark of $35,000 to $50,000/LY saved.32 For
included in the same category as curative therapy. In part, this example, an individual with a pathological fracture of a femur
was done because most palliative care is relatively inexpensive. is sent to the operating room for pinning. This surgery will
Figure 222. Proposed allocation of

cancer resources in developed countries.
Curative and palliative care are not
mutually exclusive. Resources should be
dispensed to allow the greatest benets for
the majority of individuals. Source: World
Health Organization (1990), reference 91.
Reproduced by permission of WHO.
Figure 233. Proposed allocation of cancer resources in population. (It is a great ethical dilemma: do you cure one to
developing countries. As developing countries are the least likely allow 1000 more to suffer?) Source: World Health Organization
to prevent, detect, and cure cancers, the distribution of resources (1990), reference 91. Reproduced by permission of WHO.
should be further tailored to best meet the needs of their
aid in relieving pain, improving function, and probably information, and standard formats for collection and analysis
decreasing other potential complications, such as decubitus are now available.36 Some standard denitions are listed in
ulcer and deep venous thrombosis. Table 223.
It is important to organize data in a way that balances clin-
ical and cost information side by side, as shown in Table 224.
o] Cost effectiveness is the amount of money someone must pay
What Are Important Economic Outcomes? to gain additional months or years of life. The usual bench-
mark is life years gained or LYs. The standard cost-
Economic outcomes are not different from clinical outcomes, effectiveness question is C/E = (C2 C1)/(E2 E1) where
and cost must be considered along with clinical benet. Only C = costs and E = effectiveness of treatment measured in
one medical group, the American Society of Clinical Oncology time. To adjust for quality of life, when the quantity does not
(ASCO), has published recommendations on what benet is change, the concept of utility is used. Utility is the value
justied to recommend a medical intervention, as listed in placed on time in a particular state of health. Perfect health
Table 222.35 Of note, ASCO could not dene the lowest would be assigned a utility value of 1.0 and death a value of
amount of benet that justied an intervention, for example, 2 0.0. When utility, or the time the utility value, is added, the
weeks of quality survival, but recommended that the benet equation becomes C/U where U = U2 U1. For example,
be weighed against the toxicity and costs. If cost-effectiveness a therapy that does not improve survival but increases utility
data are not available, then cost consciousness with attention by 10% will increase U by (1 year) (0.10) = 0.1 year. If this
to lowest costs for comparable results would be appropriate; treatment costs an additional $10,000/year, then the cost-
cost alone is not sufcient since more expensive treatments, utility ratio is:
such as bone marrow transplantation for relapsed leukemia,
may give better survival at reasonable cost effectiveness.32 C = C2 C1 = $10,000 = $100,000/QALY.
The economic data necessary to make decisions about
treatment may be collected in much the same way as clinical U = U2 U1 = 0.10
Table 223
Standard Denitions for Economic Outcome Analysis
Term Denition Comment
Resource utilization Number of units used Best collected prospectively, using a combination of clinical
(e.g., 9 hospital days) research forms, hospital bills, and patient diaries for outpatient
or off-site events.
Charge What is billed to the patient May be fair representation of the cost of service. Can be
accurately converted to costs using ratio of charges to cost.92
Cost What it costs society to provide the service This is different from the charge because many services cost
more or less than what is billed.
Direct medical cost Costs of standard medical interventions Usual cost-drivers include hospital days, professional fees,
diagnostic tests, pharmacy fees, other (e.g., blood products,
operating room, emergency services)
Direct nonmedical cost Costs of medical interventions not Includes transportation, time lost from work, caregiver costs,
usually captured but directly caused etc. Most are not covered by insurance and may be
out-of-pocket costs.
Perspective The viewpoint of the analysis Should be explicitly stated. Most analyses are done from the
perspective of society (valuing this intervention vs. other uses
of the same money) or a health care system (valuing this
intervention against other local health care needs). The
perspective of the individual patient or provider may give less
attention to the needs of others.36
Discounting Adjusts value of intervention for Health effects and costs should normally be discounted at 3%
future benet to present-time amount per year. Health benets in the present are worth more than
those in the future.
Source: Smith (1993), reference 35.

Copyright 1993, American Medical Association. All right reserved.
Table 224
Ways to Balance Clinical Evaluation and Cost Studies
Type of Study Advantages and Disadvantages
Clinical outcomes only Ignore costs. Easy to choose among clearly superior therapies
such as cisplatin for testicular cancer; harder among all others
that give lesser benets at high costs.
Cost only (e.g., cost of Ignores clinical outcomes. Does not help choose among clinical
treating febrile strategies. The cost of colony-stimulating factor (CSF)
neutropenia) mobilization of stem cells may be higher than that of bone marrow
collection, but it saves money later by reducing hospital stay.35
Costs and clinical
outcomes together
Cost minimization Assumes that two strategies are equal; lowest cost strategy
is preferred.
Cost effectiveness Compares two strategies; assigns dollar amount per additional
year of life (life year [LY]) saved by strategy. Example: at
present, CSFs have not improved survival, so cost must be lower
for therapy to be cost-effective.
Cost utility Compares two strategies; assigns dollar amount per additional
LY saved by strategy, then estimates the quality of that benet in
cost per quality adjusted LY. No data show signicant improve-
ment in quality of life or utilities in patients who have received
CSFs, so they are unlikely to have major impact.
Cost benet Compares two strategies but converts the clinical benets to
money (e.g., a year of life is worth $100,000). This is possible
but is rarely done due to difculty in assigning monetary value
to benet; requires assigning a monetary value to human life.
Such values can be compared to other medical interven- and vinorelbine compared to vinorelbine alone or cisplatin and
tions, as shown in Table 22-5. Many authorities use a cost effec- vindesine added substantial clinical benet45 at a reasonable
tiveness ratio of $50,000/life year as an informal benchmark to cost effectiveness of C$15,000 to C$17,000/LY.46 Given the
decide about payment for care. To an economist, 1 week of benet and low cost of the drugs, vinorelbine and cisplatin
additional life for 52 people is equal to 52 weeks of life for one compared to best supportive care would give results similar to
person, so a therapy that gains 8 weeks, with an improvement those of Jaakimainen and colleagues.44 Evans and colleagues47
in utility from 0.50 to 0.70 could still be valued as long as the used decision analysis to show that chemotherapy in combina-
$/LY is acceptable. tion with radiation and/or surgery for stage IIIA or IIIB disease
Chemotherapy is often thought of as a curative treatment, in comparison to treatment without chemotherapy would
but it is often palliative in nature, with a goal of symptom relief improve survival at a cost of C$3348 to C$14,958 per year of life
or prolonging survival. Chemotherapy may be a good treatment saved. The model showed benet at a reasonable cost under all
decision in palliative care as long as the switch to palliative care situations of reasonable clinical efcacy. The chemotherapy
is made while resources and quality time are still available.37,38 treatments t existing monetary guidelines for use.48,49
It is possible to give chemotherapy and either save money A trial of uorouracil-based chemotherapy for gastroin-
or have a cost effectiveness within accepted limits, as shown in testinal cancer patients randomized to rst-line chemotherapy
Table 22-5. Patients treated with chemotherapy for non-small- versus best supportive care, which could include later chemo-
cell lung cancer have a small benet, estimated at 2 to therapy for symptom control, showed benet at acceptable
4 months in most cases,39,40 and symptom relief in up to 60% cost-effectiveness ratios.50 For the whole group, chemotherapy
of cases.41 Both the ASCO42 and the Ontario government43 rec- enhanced survival by about 5 months at a cost of about
ommend consideration of chemotherapy for suitable patients. $20,000/LY gained, within accepted bounds.32 For subsets of
Jaakimainen and coworkers44 found that chemotherapy actu- types of cancer, such as gastric cancer, the treatment was effec-
ally saved disease-management costs compared to best sup- tive at a reasonable cost. For most other subsets, the patient
portive care by preventing hospitalizations late in the disease numbers were too small to draw meaningful conclusions about
course. The cost-effectiveness ratios ranged from C$8000 either clinical effect or cost effectiveness.
(cost saving) to C$20,000 (costs more than supportive care) In a metastatic prostate cancer study, mitoxantrone added a
for each additional year of life.44 Chemotherapy with cisplatin clinical benet in terms of pain relief and symptom control in
Table 225
Chemotherapy vs. Best Palliative Care or Alternative Treatments
Topic Conclusion
Lung cancer Chemotherapy gained 813 weeks compared to best
Chemotherapy vs. best supportive care.44
supportive care in Chemotherapy generally saved money for the province of
non-small-cell lung cancer.44, 46 Ontario, from a savings of $8000 to an additional cost of
$20,000 depending on assumptions. Similar results were
found for vinorelbine and cisplatin.46
Combined modality including Chemotherapy in combination with radiation or surgery
chemotherapy vs. radiation adds clinical benet; for chemotherapy plus radiation,
or surgery for stage III 1- and 5-year survival rates are increased from 40% to 54%
non-small-cell lung cancer.4749 and from 6% to 17%, respectively. The addition of
chemotherapy to IIIB patients added cost of $15, 866, and
addition of chemotherapy to IIIB patients added $8912.
The cost per year of life gained was well within accepted
bounds at $3348 to $14,958 CAN.
Alternating chemotherapy The alternating chemotherapy arm cost more, but because
for small-cell lung cancer84 it was more effective, the marginal cost effectiveness was
only $4560/year of life.
Gastrointestinal cancer Chemotherapy added 5 months median survival if given
Chemotherapy vs. best early rather than late, with symptom palliation for
supportive care followed by 4 months. The additional cost of about $20,000 per life
chemotherapy for gastrointestinal year was within accepted bounds.
cancer patients50
Prostate cancer Mitoxantrone did not improve survival but did improve
Palliative chemotherapy quality of life as measured by several indices, and the
with mitoxantrone plus mitoxantrone strategy cost less than prednisone
prednisone vs. prednisone51, 52 supportive care.
Breast cancer High-dose chemotherapy added 6 months at a cost
High-dose chemotherapy for of $58,000, or $116,000 per life year; this is palliative
limited metastatic disease vs. care because this treatment has not been shown to
standard chemotherapy56 be curative.
Other Chemotherapy, compared to supportive care, added
Acute myelogenous leukemia58 additional cost, but the cost effectiveness was $18,000/life
year, within acceptable limits.
23 of 80 patients, lasting for 6 months more than prednisone survival plateau.55 In the only available study of comparative
alone, but did not alter survival when compared to prednisone treatment, Hillner and associates56 compared best standard
alone.51 Although initial drug costs were higher, total disease chemotherapy to high-dose chemotherapy with a stem-cell
costs were lower in the group that received mitoxantrone as transplant. High-dose chemotherapy added about 6 months at
initial treatment,52 so good chemotherapy palliation could be a cost-effectiveness ratio of $116,000/LY gained, outside the
accomplished at no additional cost to society. Total androgen bounds of accepted treatments. Of interest, drug costs for
blockade produced small clinical benet at an acceptable cost most breast cancer patients amount to less than 10% of the
to society compared to single androgen blockade.53 total cost.57
There have been no studies on the effectiveness or cost effec- Sometimes, highly expensive chemotherapy can be a good
tiveness of chemotherapy for metastatic breast cancer compared value for society if it gains substantial amounts of time, or if
to best supportive care. Hospitalization accounts for the major- the comparative treatment is also expensive. Chemotherapy
ity of costs, while chemotherapy has been a relatively trivial for acute myelogenous leukemia costs more than supportive
cost in the United Kingdom.54 High-dose chemotherapy is care, but was effective enough to gain months or years com-
commonly used for incurable metastatic disease, and in the pared to certain death, so the cost-effectiveness ratio was
one randomized controlled trial, it doubled overall survival acceptable. Allogenic transplant was even more expensive than
from 10.4 to 20.8 months but did not produce a long-term usual second-line chemotherapy, but the transplant survival
benet of 48% versus 21% at 5 years was sufcient to offset managed care with restricted admission policies. However, the
higher costs of treatment and make the cost-effectiveness ratio conclusion must be that this is better pain management and
about $18,000/LY.58 better medical care and probably saves money.67
The less expensive the setting, the less costly the interven- Teaching staff about choices for intensive care unit (ICU)
tion, as shown in Table 226. Home opioid infusions had lower use can improve economic outcomes. In one setting, an ethi-
total costs due to lower hospital costs despite higher drug cist in the surgical ICU addressed the issues of patient choice
equipment and nursing costs.59 Outpatient administration of about dying and the ethics of futile care. This was associated
chemotherapy was less expensive than inpatient administra- with a decrease in length of stay from 28 to 16 days, and a
tion.60 Home chemotherapy compared to outpatient chemo- decrease in surgical intensive care days from 2028 to 1003, far
therapy was accepted well, with only two of 424 patients greater than observed in other parts of the hospital. Cost sav-
electing to discontinue home treatment; it was safe and no ings were estimated at $1.8 million.68 In a similar project,
more costly, with an average cost of $50 as compared to $116 in Dowdy and colleagues69 did proactive ethics consultations for
the hospital and equal total costs.61 all mechanically ventilated patients beyond 4 days and showed
Disease-management strategies have shown some modest improved length of stay (less use of the ICU, either by discon-
improvements, with better quality of care, less cost, and tinuing futile care or transferring the patient to lesser-intensity
high patient satisfaction. The available studies are shown in units) and a decrease in costs.
Table 227. Clinical practice guidelines for supportive care may
Coordinated care may be one of the most successful decrease costs, but formal data have not been published.63
disease-management strategies. The Medicare Hospice Benet While there have been signicant anecdotal data and clinical
requires nurse coordination, team management, easy access to opinion that hospice provides improved quality and
low per diem hospital beds for respite or temporary care, and decreased cost, the available data do not show that hospice
expanded drug coverage.62,63 Adding a nurse coordinator for improves care or saves money, as shown in Table 228.63,70,71 A
terminally ill patients in England did not change any disease
outcomes: patients still died, and most still had some unre-
Table 226
lieved symptoms; however, patient and family satisfaction was Site of Service
helped slightly.64 Total costs were reduced from 8814 to 4414
due to decreased hospital days, for a cost savings of 41% in Topic Conclusion
almost all conditions. Home nursing care was associated with Opioids in home Per diem costs were higher for
more patients dying at home.65 infusion home patients, but total costs were
One center did a pain-management intervention with lower, with equivalent palliation.59
enhanced institutional education programs, a highly visible Inpatient or Outpatient administration was less
respected consultative team, and a pain-resource center for outpatient expensive, $184 vs. $223US.60
nurses and families. This was associated with a decrease in Home or inpatient/ Home chemotherapy was safe, well
admissions and readmissions for pain control and marked clinic chemotherapy accepted, and cost less per
cost savings.66 The study was not randomized and could not treatment.61
account for other signicant changes, such as the growth of
Table 227
Process or Structural Changes in Care
Topic Conclusion
Reducing uncontrolled pain admissions A system-wide intervention of focus on pain

management, a supportive-care consultation
team, and a pain resource center. This was
associated with a reduction in admissions from
255/5772 (4.4%) to 121/4076 (3.0%), at a project
cost savings of $2,719,245.66
Presence of nursing care for end of life Nursing care availability allowed more patients
to die at home, consistent with the wishes of
most patients.65
Clinical practice guidelines for A division changed practice to standardized oral
supportive care: antiemetics, treatment of antiemetics and once-daily ceftriaxone and
febrile neutropenia, treatment of pain gentamicin. Cost savings were estimated at
$250,000 for each intervention, yearly.63,85,86
Table 228
Hospice vs. Nonhospice Care
Topic Conclusion
Randomized controlled trial Hospice did not improve or worsen quality of care by any
of hospice vs. nonhospice measured benchmark (pain, ability to perform activities of
care in Veterans Hospital daily living). There was no difference in diagnostic procedures.
Total costs were $15,000 per patient, with no difference in
the arms.87
Hospice election vs. Medicare saved $1.65 for each $1 spent on hospice programs;
standard care, Medicare most of the savings occurred during the last month of life.72
beneciaries, 1992
Hospice election vs. Medicare saved $1.26 for each $1 spent on hospice programs;
standard care, Medicare most of the savings occurred during the last month of life.74
beneciaries, 1988
Total costs from databases No signicant difference in total costs from diagnosis to death,
but signicant cost savings of 39% for hospice patients who
were in hospice more than 2 weeks.88
Total disease-management No different or slightly higher costs among Medicare
costs comparing those who beneciaries who elected hospice. Within the hospice period,
elected hospice to those average 27 days, costs were slightly lower for those who
who did not elected hospice.63
Home care Home care provided by relatives is not much different ($4563
for each 3-month period) from costs in a nursing home or
similar setting. The sicker the patient became, the more the cost
to the family regardless of diagnosis. Costs were lowest when
the patient and caregiver lived in the same household.89,90
Matching resource use to Hospice patients were likely to receive more home nursing and
the dying patient to spend less time in the hospital than conventional care
patients. Conventional care was the least expensive when overall
disease management costs were calculated, but hospital-based
hospice ($2270) and home care hospice ($2657) were less.
large, randomized controlled trial of hospice versus standard Hospice may actually not save total disease-management
care showed that hospice did not improve quality of care by costs but just shift them to costs not captured by our current
any measured benchmark (pain, ability to perform activities accounting systems. In our own study of Medicare hospice
of daily living). Patients still used many hospital days (48 for use in Virginia, total disease-management costs were actually
controls, and 51 for hospice), but more of the hospice patients higher for those who eventually elected hospice. Those
were hospitalized on the hospice unit. There was no differ- who elect hospice tend to have resources to absorb more
ence in diagnostic procedures or total costs (about $15,000 home care costs, more out-of-pocket drug costs, etc. The
per patient). data are consistent with an affluent group of patients using
More recent data suggest that hospice care can be cost sav- all of the resources needed for treatment, then using hospice
ing.18,72,73 Smith and colleagues and Brumley and colleagues resources in addition. There are no published data on
demonstrated that integrating palliative care into a curative whether the medically underserved use hospice, whether
practice model earlier in a disease trajectory improved patient they will accept its philosophy, or how much they will cost
satisfaction while decreasing needs of acute care and lowering the system.63
health care costs. In the 1992 Medicare les, those cancer Database studies have shown similar results. In a retrospec-
patients who elected hospice cost less than those who did not tive study of 12,000 patients at 40 centers, Aiken75 found that
elect hospice. For those who enrolled in hospice in the last hospice patients were more likely to receive home nursing care
month of life, typically over half of Medicare hospice patients, and to spend less time in the hospital than conventional care
Medicare saved $1.65 for each $1 spent. However, those who patients. Of the three models of care evaluated, conventional
elected hospice tended to use more resources in the months care was the least expensive when overall disease-management
from diagnosis until about 3 months before death, so the total costs were calculated, but hospital-based hospice ($2270) and
disease-management savings were close to zero. Similar nd- home care hospice ($2657) were less expensive than conven-
ings were reported previously.74 tional care ($6100) in the last month of life.
Table 229
Use of Advanced Directives, Do-Not-Resuscitate (DNR) Orders
Study Conclusion
California durable power of attorney No effect on treatment charges, types of

for health care placed on chart78 treatment, or health status.
DNR93 Average of $57,334 for those without DNR
orders, compared to $62,594 for those with
DNR orders.
Advance directives in No cost savings with advance directives. Before
SUPPORT hospitals77 the SUPPORT intervention, there was a 23%
reduction in cost associated with presence of
advance directives ($21,284 versus $26,127).
Intervention patients were more likely to have
advance directives documented.
Average cost was $24,178 for those without
advance directives, $28,017 for those with
advance directives on the intervention arm.
Advanced directives, such as do-not-resuscitate (DNR) role of the advance practice nurse may be a powerful tool in
orders, have been advocated to allow patients to make auto- identifying and coordinating the needs of patients/families
nomous choices about their care at the end of life and possibly requiring palliation. Advance practice nurses may ll a void
to reduce costs by preventing futile care. However, as reviewed within the hospital, hospice, and nursing home for this
by Emanuel and Emanuel,70,76 there has been no cost saving population.80,81
associated with the use of either advanced directives or DNR A cost not truly examined is the out-of-pocket cost that the
orders (Table 229). These ndings have been conrmed in patients signicant others bear in caring for them, specically
the more recent SUPPORT study.77 in terms of lost work hours, expended resources, and simple
End-of-life or advanced planning is clearly a part of palliative care hours not reimbursed through the health care system.
care and care of the dying. Levinsky22 has questioned whether Also to be determined is the increased health care costs of
end-of-life planning has become an economic strategy as much the caregivers due to the stressful, often exhausting require-
as a way to respect a patients wishes: Confusion between ments.82
advance planning as a method to nd out what the patient Nursing needs to continue to advocate for this population
wants and advance planning as a mechanism to reduce medical while supporting effective quality care, and fair utilization
care and thereby contain costs represents a clear danger to the of resources must be frequently assessed. For example, the
goals of informed consent and autonomy for patients. In a ran- use of advanced technology, especially expensive diagnostic
domized study of 204 patients with life-threatening diseases, it tests, may be accepted as routine in an acute care hospital,
was found that in those who executed an advance directive, even though it is costly, unnecessary, and not consistent
there was no signicant positive or negative effect on well- with the goals of palliative care. Consider the following
being, health status, medical treatments, or medical treatment examples.
charges.78
1. An 82-year-old man with end-stage chronic
obstructive pulmonary disease requests removal
o] from a respirator and comfort measures only. He is
Nursing Issues deemed competent, yet it is questionable if he will
be able to survive off the respirator. His wishes are
Clearly, many issues related to nursing impact need to be followed, and he is extubated. While adamantly
explored. Role utilization and its potential impact will vary refusing any discussion regarding reintubation, he
within each setting. For example, an entire multidisciplinary continues to have arterial blood gases sampled every
palliative care team may be necessary to meet the needs of the 2 to 3 hours around the clock. Clearly, use of such
population in a large university-based hospital, yet a specially sampling is academic because the patient refuses
trained nurse may be adequate in a small community hospi- reintubation. Sampling of arterial blood gases is
tal. Such impact of services needs to be evaluated in many costly and painful and does not contribute to the
elds to examine quality of care and cost effectiveness.79 The goals of comfort.
2. A 32-year-old man with widely metastatic colon can- care team have, should the family be unwilling to
cer arrives in your facility with a bowel obstruction understand the illness trajectory of their relative?
related to his disease. He has been in the local hos- What role should the hospital take in this matter?
pice program. After evaluation, his prognosis is con- How will you advocate?
rmed as approximately 6 weeks. He has a 6. A 68-year-old previously healthy woman has suf-
nasogastric tube placed to relieve persistent nausea, fered a traumatic subdural hematoma, with signi-
vomiting, and abdominal discomfort. After 4 days of cant brain damage. She only opens her eyes to
decompression, the surgeon offers to place a gastros- verbal stimuli and does not follow commands
tomy tube for drainage and decompression. While 2 weeks after her injury. She has been receiving NG
the surgery will be costly, placement of the gastros- feedings. The patient has a living will that clearly
tomy tube meets the goals of both comfort and pro- states no articial nutrition if her condition
viding the patient with the ability to return home. becomes irreversible. The social worker informs the
3. A 29-year-old woman with acquired immunode- medical team that she cannot place this patient in a
ciency syndrome is admitted for severe debilitating nursing home unless she becomes skilled, which
neuropathic pain, unresponsive to typical adjunc- a PEG feeding tube would accomplish. What is your
tive analgesic agents. The patient is losing her ability role? The hospital could lose considerable revenue if
to ambulate due to the pain. She is given a trial of the patient is not placed in a nursing home? What
epidural opioids with local anesthetics, which offer presently happens in your facility? What role would
almost complete pain relief. An intrathecally your ethics and risk management play in this case?
implanted pump, at a cost of several thousand
dollars, is placed. While the initial cost is stagger-
ing, the long-term benets are considerable, includ- o]
ing measurable improved functional status, Summary
decreased occurrence of depression, decrease in
required skilled and nonskilled nursing care hours, Economic outcomes are increasingly important for all types of
decreased opportunistic infection, and improved health care, including palliative care. The few studies show
quality of life for both the patient and her signi- substantial opportunities for improvement by using disease-
cant others. management strategies. Chemotherapy for some cancers
4. A 60-year-old woman with multiple myeloma is (non-small-cell lung cancer, prostate cancer, and gastrointes-
admitted with an adjusted serum calcium level of tinal cancer) is reasonably effective and has acceptable cost-
179 mg/dL. The myeloma is now progressing and effectiveness ratios; this does not apply to any regimen that has
refractory to therapy. Intravenous uids, diuretics, not been formally evaluated. Coordination of palliative care
biphosphates, and calcitonin are administered, and shows no major clinical benet but does show major cost sav-
serum calcium is drawn every 12 hours. The ings. Directed, ethically motivated interventions about futile
patients disease is irreversible. The present inter- care appear to produce signicant cost savings. The use of
ventions will perhaps delay an inevitable outcome, advance directives or hospice care may be good medical care
but they will cost thousands of dollars, while not but has not been shown to produce major economic benet.
improving the patients quality of life, and may The cost of care is rising due to the increasing age of the
potentially cause discomfort. population, more cancer cases and chronic diseases, increased
This process of reassessment and recognition demand for treatment, and new and expensive technologies.
should be fostered through education and role Our limited resources must be rationed wisely so that we can
modeling and should begin in the very basic nurs- provide both curative and palliative care. The ethical implica-
ing courses. It must be integrated throughout the tions of using economic and management outcomes rather
longitudinal nursing curriculum, as patients dealing than traditional health outcomes include shifting emphasis
with end-of-life disease processes exist in almost all from helping at all cost to helping at a cost society can afford,
health care settings. It is imperative that outcomes as well as how much society is willing to pay; the value of care
research accompanies education to ensure the best to the dying versus those with curable illnesses; and tolerance
and most cost-efcient palliative care available. of suboptimal care.
5. A 36-year-old man with a self-inicted gunshot The outcomes of palliative care do not differ from those of
wound arrives in your emergency room. The neuro- other cancer treatment, from the perspective of economics or
surgical team determines the injury to the brain is health service research. For treatment to be justied, there
devastating and that the prognosis is grave. The must be some demonstrable improvement in disease-free or
family requests all measures to keep him alive no overall survival, toxicity, quality of life, or cost effectiveness.
matter what. They demand ongoing ventilator and Palliative care usually does not change survival, and it does not
nutritional support. What role should the nurse take have a measurable cost-effectiveness ratio since it does not gain
in this situation? What options might the health years of life. There may be little change in quality-adjusted life
years because the improvements in health state are too small to 11. Bevan, G. Taking equity seriously: a dilemma for government from
measure with current instruments or are lost in the impact of allocating resources to primary care groups. BMJ 1998;316:3943.
the disease. 12. Hillner BE, Smith TJ. Hospital volume and patient outcomes in
Only a few studies have assessed the economic outcomes of major cancer surgery: a catalyst for quality assessment and con-
palliative therapy. The major areas of interest include the fol- centration of cancer services. JAMA 1998;280:1784.
13. Gillis CR, Hole DJ. Survival outcome of care by specialist sur-
lowing: (1) palliative chemotherapy versus best supportive care;
geons in breast cancer: a study of 3786 patients in the west of
(2) supportive care for cancer symptoms; (3) the process and
Scotland. BMJ 1996;312:145148.
structure of care; (4) follow up; and (5) hospice care. Palliative 14. Sainsbury R, Haward R, Rider L, Johnstone C, Round C. Inu-
rst-line chemotherapy for stage III and IV non-small-cell lung ence of clinician workload and patterns of treatment on survival
cancer, mitoxantrone for prostate cancer, and uorouracil- from breast cancer. Lancet 1995;345:12651270.
based chemotherapy for gastrointestinal cancer have accept- 15. Feuer EJ, Frey CM, Brawley OW, et al. After a treatment break-
able cost-effectiveness ratios. Supportive care effectiveness and through: a comparison of trial and population-based data for
cost for infections, nausea, and pain can be improved. Research advanced testicular cancer. J Clin Oncol 1994;12:368377.
outside of cancer is scant. Hospice care saves at best 3% of total 16. Nguyen HN, Averette HE, Hoskins W, Penalver M, Sevin B,
care cost but gives care equal to nonhospice care. Coordination Steren A. National survey of ovarian carcinoma, Part V. The
of palliative care will save 40% of costs but will not improve the impact of physicians specialty on patients survival. Cancer
1993;72:36633670.
clinical outcomes of dying patients.83 Nursing clearly has the
17. Desch CE, Penberthy L, Newschaffer C, et al. Factors that deter-
ability to impact the care and cost for this population and
mine the treatment of local and regional prostate cancer. Med
should be in the forefront of these issues. 81 Care 1996;34:152162.
18. Smith T, Coyne P, Cassel B, Penberthy L, Hopson A, Hager M. A
high-volume specialist palliative care unit and team may reduce
acknowled gements in-hospital end-of-life care costs. J Palliative Med 2003;6:
699705.
This work is based on a chapter published in Topics in Palliative 19. Berger JT, Rosner F. The ethics of practice guidelines. Arch
Care, Vol. 5, edited by R.K. Portenoy and E. Bruera: Economic Intern Med 1996;156:20512056.
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outcomes for patients with sickle-cell disease. Oncol Nurs Forum
Lyckholm. New York: Oxford University Press, 2001: 157175.
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21. Smith R. An ethical code for everybody in health care: a code
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23o] Ashby C. Watson
Urgent Syndromes at the End of Life

He not busy being born is busy dying.Bob Dylan
Syndromes Covered in This Chapter Include: Hallmarks of palliative care are skilled assessment and rapid
Superior vena caval obstruction evaluation and management of symptoms that impact nega-
Pleural effusion tively on patient and family quality of life. This chapter
Pericardial effusion addresses select syndromes that unless recognized and treated
Hemoptysis promptly will cause unnecessary suffering for the patient and
Spinal cord compression family.
Hypercalcemia
See individual topics for Key Points
o]o]o]
SUPERIOR VENA CAVAL OBSTRUCTION
9=
case study 1
Mr. W, a Patient with Small-Cell Lung Cancer
Mr. W, a 72-year-old retired Army colonel, recently had
a central-venous access device placed in preparation for
chemotherapy for small-cell lung cancer. He is also receiving
concurrent radiation therapy. You meet Mr. W and his wife
for the rst time in the outpatient oncology clinic. They are
nervous about chemotherapy, but he says Ill do anything to
beat this thing. His wife tells you in his presence, I think his
arm has swelled some since they put that catheter in. His
face seems fuller in the morning when he wakes up and he
looks different. Is that normal? Mr. W says, Oh honey, you
worry about everything, and turns to you, winks, and says,
Theres nothing wrong, right? He then asks his wife to
leave the room so he can talk to you privately. He says I
want to know what Im facing, but I dont want my wife
to worry.
o]
Key Points
Superior vena caval obstruction can cause distressing symptoms
that are amenable to palliation.
The common presenting symptoms are dyspnea, facial swelling, and
feeling of fullness in the head.
443
The patients swollen and distorted facial features can be highly and several lymph node chains. There is little room for struc-
upsetting to the patient and family. tures to move or expand within this cavity, thus the superior
The diagnosis of vena caval syndrome can usually be made on vena cava is vulnerable to any space-occupying lesion in its
clinical grounds. vicinity. Venous drainage from the head, neck, upper extremi-
ties, and upper thorax collects in the SVC on its way to the
Denition right atrium. The SVC has a thin wall, and normally, blood
ows through the vessel under low pressure. When the vessel is
Superior vena caval obstruction (SVCO) is a disorder pro- compressed, blood ow is slowed, uid pressure is increased,
duced by obstruction of blood ow in the superior vena cava, and occlusion may occur.9
which results in impairment of blood ow through the supe- When venous collateral circulation has time to develop, the
rior vena cava into the right atrium. Severity of the syndrome symptoms of SVCO are likely to develop insidiously.10 The
depends on rapidity of onset, location of the obstruction, and presence of collateral circulation, tumor growth rate, and
whether or not the obstruction is partial or complete. Obstruc- extent and location of the blockage are factors in determining
tion may occur acutely or gradually, and symptoms may be how rapidly SVCO develops.11
severe and debilitating.1,2
Signs and Symptoms
Epidemiology
The onset of symptoms is often insidious. Patients may report
The patient most likely to experience SVCO is a 50- to 70- subtle signs that include venous engorgement in the morning
year-old man with a primary or metastatic tumor of the hours after awakening from sleep, difculty removing rings
mediastinum. More than 90% of SVCO cases are due to from ngers, and an increase in symptoms when bending for-
cancer, most commonly, endobronchial tumors.3,4 In the ward or stooping, all of which may not be noticed initially.1,9,12,13
majority of patients, the presence of SVCO is not a poor The most common symptom of the syndrome is dysp-
prognostic indicator of survival.5 The prognosis of patients nea.12,14,15 Swelling of the neck and face is seen in 50% of
with SVCO strongly correlates with the prognosis of under- patients. Other common symptoms are cough (54%), arm
lying disease. swelling (18%), chest pain (15%), and dysphagia (9%).7 Physi-
Two types of obstruction1 may cause SVCO: (1) intrinsic cal ndings include venous distention of the neck (66%),
obstruction, and (2) extrinsic obstruction. Intrinsic obstruc- venous distention of the chest wall (54%), facial edema (46%),
tion is usually caused by primary tracheal malignancies that plethora, a very ruddy facial complexion (19%), and cyanosis
invade the airway epithelium, that is, squamous cell carcinoma (19%). Patients may experience tachypnea, hoarseness, nasal
and adenoid cystic carcinoma, as well as other benign and stufness, periorbital edema, redness and edema of the con-
malignant tumors. Extrinsic obstruction occurs when airways junctivae, and, rarely, paralyzed vocal cord.16
are surrounded and compressed by external tumors or In severe or rapid cases, where collateral circulation has not
enlarged lymph nodes, that is, lymphoma, and locally advanced yet made accommodation for increased blood ow, symptoms
thyroid, lung, or esophageal cancers. Obstruction may be may be immediately life-threatening. Patients may experience
caused by a tumor arising in the right main or upper-lobe orthopnea, stridor, respiratory distress, headache, visual distur-
bronchus or by large-volume lymphadenopathy in the right bances, dizziness, syncope, lethargy, and irritability. As the con-
paratracheal or precarinal lymph node chains.6 dition further progresses, signicant mental status changes
Thrombosis of the superior vena cava (SVC) is also associ- occur, including stupor, coma, seizures, and, ultimately, death.17
ated with insertion of indwelling intracaval catheters and
central-venous access devices, which are thought to damage Diagnostic Procedures
the intima of vessels. Both adults and children may experience
thrombosis of the SVC. More than compression or tumor, Plain chest x-ray lms are the least invasive diagnostic modality.7
thrombosis is likely to cause acute and complete obstruction Computed tomography (CT) is the most widely available and
of the SVC.7 Cancer patients are also at greater risk of experi- used modality to elucidate the location, extent of obstruction or
encing hypercoagulopathies, which increase the risk of experi- stenosis, presence and extent of thrombus formation, and status
encing thrombosis and SVCO. Other less common of collateral circulation,1820 and can be performed unless the
nonmalignant causes associated with SVCO are mediastinal patient is so debilitated that no further treatment is indicated or
brosis from histoplasmosis and iatrogenic complications desired by the patient.21 Magnetic resonance imaging (MRI) is
from cardiovascular surgery.7,8 another diagnostic tool that can conrm the diagnosis of SVC21
and distinguish between tumor mass or thrombosis.
Pathophysiology
Palliation of Symptoms
The superior vena cava is located in the rigid thoracic cavity
and is surrounded by a number of structures, including the The effectiveness of palliation of symptoms of SVCO in
sternum, trachea, right bronchus, aorta, pulmonary artery, patients who have persistent or recurrent small-cell lung cancer
Urgent Syndromes at the End of Life 445
(SCLC) has been reviewed.5 Chemotherapy or mediastinal given once, then repeated every 6 to 8 hours as necessary, and
radiation therapy were found to be very effective as initial may be increased by 20 to 40 mg per dose if necessary. The
treatment for patients who have SCLC and SVCO at rst pre- dose should be individualized to the requirements of each
sentation, as well as in those with recurrent or persistent dis- patient.28
ease. It was recommended that radiation therapy should be
used in those patients who have been previously treated with Nursing Management
chemotherapy. However, due to side effects, large fractions
should be avoided.5 When comparing the treatment modali- The primary nursing goals are to identify patients at risk for
ties used to treat SVCO, including chemotherapy alone, developing SVC syndrome, to recognize the syndrome if it
chemotherapy and radiation therapy, and radiation therapy does occur, and to relieve dyspnea and other symptoms.
alone, none has proved superior.6 Adverse prognostic indica- Reduction of anxiety is an important nursing goal. The patient
tors are dysphagia, hoarseness, and stridor. and family may experience signicant distress not only
because of physical symptoms experienced but also because of
SVC Stenting an altered physical appearance, including a ruddy, swollen,
distorted face and neck.
Current American College of Chest Physicians (ACCP) guide- The nurse monitors the patient for side effects of treatment
lines state that lung cancer patients with symptomatic SVCO and provides symptom management. For example, if the
can be treated with radiation therapy, insertion of an SVC patient is receiving radiation therapy, be alert for signs of
stent, or both. 22 More recent evidence indicates that sympto- dyspnea (which may indicate presence of tracheal edema),
matic patients may possibly be better treated initially by SVC pneumonitis, dysphagia, pharyngitis, esophagitis, leukopenia,
stenting. Although there are no controlled studies comparing anemia, skin changes, and fatigue. If the patient is receiving
radiation therapy with SVC stenting, several reviews and non- chemotherapy, be alert for signs of stomatitis, nausea and
randomized studies indicate that this procedure can relieve vomiting, fatigue, leukopenia, anemia, and thrombocytope-
edema, promote improved supercial collateral vein drainage, nia. If the patient is receiving steroid therapy, educate the
and improve neurological impairment. It can also relieve dys- patient and family about the potential for developing proxi-
pnea, provide greater relief of obstruction, create few or minor mal muscle weakness, mood swings, insomnia, oral candida,
complications,6,17,2326 and allow for the full use of chemother- and hyperglycemia. Aspects of palliative nursing care always of
apy and radiation therapy,17 thus providing more rapid relief primary importance are early recognition and management of
in a higher proportion of patients.6 Complications associated symptoms, educating the patient and family about these
with SVC stenting procedures include bleeding due to antico- symptoms and what to report, and providing reassurance that
agulation, arrhythmia, septic episodes, thrombosis, brosis, these symptoms, if they occur, will be controlled.
and migration of the stent.
Thrombolytic Therapies o]o]o]

PLEURAL EFFUSION
Thrombolytic therapy has often been successful in the lysing
of SVC thrombi.27 Another alternative, percutaneous angio-
9=
plasty with or without thrombolytics, may open SVC obstruc-
case study 2
tions. Documented thrombi may be treated with tissue
Ms. B, a Patient with Breast Cancer
plasminogen activators (TPS).
Ms. B, a 42-year-old divorced woman, has been living with
Drug Therapy breast cancer for the last 5 years. She has received numerous
therapies, none of which has halted the progression of her
Steroids have been one of the standard therapies for treatment disease, but she wants to continue with chemotherapy. She
of SVCO in spite of the lack of evidence to support their use. now has widely metastatic disease in her bone, liver, and both
Prednisone and methylprednisolone have both been used to lungs. In the clinic, you are preparing her chemotherapy as
reduce inammation in the treatment of SVCO. Prednisone she tells you that over the past several weeks she has been
dosages range from 5 to 60 mg orally once a day or are given in feeling more fatigued and has no appetite. She has also been
a divided dosage schedule of either twice daily or four times feeling more short of breath, which rst occurred when she
daily. The drug is then tapered over 2 weeks as symptoms was walking but now is present all the time. She complains of
resolve. Methylprednisolone may be given in an initial IV feeling pressure and pain in her chest and especially when
dosage of 125 to 250 mg. The maintenance dose is 0.51 mg/kg/ taking in a deep breath. I . . . know . . . its the . . . cancer tak-
dose every 6 hours for up to 5 days.28 ing . . . over. Im losing . . . the battle, she tells you breath-
Diuretics, such as furosemide, may be given to promote lessly. Her pulse is rapid and her respirations are 24 a minute.
diuresis, thus decreasing venous return to the heart, which You notice that she is using her accessory breathing muscles
reduces pressure in the SVC. In general, a 20- to 80-mg dose is to breathe. You listen to her lungs and she has decreased
breath sounds on the left side; she also has decreased the pleural cavity and then into the pulmonary circulation.53
diaphragmatic excursion on her left side. When you percuss Osmotic and hydrostatic pressure act to ensure that equilib-
the lungs, you also notice dullness on the left side. rium is maintained between absorption and production of
o] uid in the pleural space. When this equilibrium is disturbed,
uid can accumulate in the pleural cavity.5456
Key Points A number of factors may disturb this equilibrium:
The treatment of pleural effusion is palliative and symptomatic. (1) metastatic implants or inammation that cause increased
The treatment approach depends on clinical circumstances, hydrostatic pressure in pulmonary circulation; (2) inamma-
the patients general condition, and nearness to death. tory processes that increase capillary permeability and
Preemptive pain management is a critical nursing function increase oncotic uid pressure in the pleural space; (3) hypoal-
when patients undergo invasive procedures. buminemia that decreases systemic oncotic pressure;
(4) tumor obstruction or lung damage that creates increased
Denition negative intrapleural pressure; (5) impaired absorption of
lymph when channels are blocked by tumor; and (6) increased
Pleural effusion is dened as a disparity between secretion and vascular permeability caused by growth factors expressed by
absorption of uid in the pleural space secondary to increased tumor cells. 2931,57,58 Patients with large pleural effusions have
secretion, impaired absorption, or both, resulting in excessive demonstrated left-ventricular diastolic collapse and cardiac
uid collection.2932 tamponade, which resolved with thoracentesis. 59,60
Epidemiology Diagnostic Procedures
More than 150,000 pleural effusions (PE) are diagnosed each A chest x-ray will usually establish the presence of the pleural
year in the United States.33 Parapneumonic disease is the most effusion and should also differentiate the presence of free versus
common cause of pleural effusions, followed by malignant loculated pleural uid.61 CT can show pleural or lung masses,
disease. Bronchogenic, breast, and lymphoma malignancies adenopathy, pulmonary abnormalities, such as inltrates or
account for 75% of all malignant pleural effusions (MPE),34 atelectasis, or distant disease.6264 Chest ultrasound may differ-
followed by ovarian cancer and gastric cancer, in order of entiate between pleural uid and pleural-thickening disease.65,66
descending frequency.35 Almost half of patients with metasta- In some cases, once evidence of the effusion has been estab-
tic disease will experience a pleural effusion sometime during lished and obvious nonmalignant causes have been ruled out,
the course of their disease.3640 a diagnostic thoracentesis may be helpful in establishing the
Pleural effusions occur in 7% to 27% of hospitalized diagnosis. Sonographic guidance can avoid problems associ-
human immunodeciency virus (HIV) patients.41 The three ated with performing blind thoracentesis.64
leading causes of PE in those with HIV disease are parapneu-
monic infection, pulmonary Kaposis sarcoma (KS), and Signs and Symptoms
tuberculosis.4244 The overall mortality rate associated with
pleural effusion in HIV patients is 10% to 40%.44 Unfortu- Dyspnea is the most common symptom of pleural effusion
nately, the presence of malignant pleural effusion is usually and occurs in about 75% of patients.29,33,3537,67 Its onset may be
associated with widespread disease and poor clinical progno- insidious or abrupt and depends on how rapidly the uid
sis, particularly in those with malignancy or AIDS. The overall accumulates.47 It is almost always related to collapse of the
mean survival for cancer patients who have MPE is 4 to lung from the increase of pleural uid pressure on the lung.57
12 months.45,46 Lung cancer patients usually die within 2 to The patients inability to expand the lung leads initially to
3 months, breast cancer patients within 7 to 15 months, and complaints of exertional dyspnea. As the effusion increases in
ovarian cancer patients within 9 months.4749 The mean sur- volume, resting dyspnea, orthopnea, and tachypnea develop.
vival period of those with pulmonary KS and MPE is 2 to The patient may complain of a dry, nonproductive cough, and
10 months; for those who have lymphoma and MPE, it is an aching pain or heaviness in the chest. Pain is often
about 9 months.5052 Nearly all patients who have malignant described as dull or pleuritic in character.68 Generalized sys-
pleural effusion are appropriate candidates for hospice care.47 temic symptoms associated with advanced disease may also be
present: malaise, anorexia, and fatigue.30,34,66
Pathophysiology Physical examination reveals the presence of dullness to
percussion of the affected hemithorax, decreased breath
Each lung is covered with a serous membrane called the sounds, egophony, decreased vocal fremitus, whispered pecto-
pleura. A closed cavity is located between the pleura and the riloquy, and decreased or no diaphragmatic excursion.30,69,70 A
surface of each lung, called the pleural cavity. Under normal large effusion may cause mediastinal shift to the side of the
circumstances, it is bathed with 10 to 120 mL of almost effusion; tracheal deviation may be present. Cyanosis and
protein-free uid that continuously ows across the pleural plethora, a ruddy facial complexion that occurs with partial
membrane. The uid moves from the systemic circulation into caval obstruction, may also be present.30,70
Medical and Nursing Management can be drained every hour until the chest is completely empty,
but a slow rate of drainage is recommended.64,75 The chest tube
Overall medical management of malignant pleural effusion is then connected to a closed-drainage device. To prevent re-
depends on multiple factors. The history of the primary expansion pulmonary edema, water-seal drainage alone and
tumor, prior patient history and response to therapy, extent of intermittent tube clamping should be used to allow uid to
disease and overall medical condition, goals of care, and sever- drain slowly.
ity of symptom distress. In some cases, systemic therapy, hor- Complications of chest tube placement include bleeding
monal therapy, or mediastinal radiation therapy may provide and development of pneumothorax, which occurs when uid
control of pleural effusions.64 Symptomatic management of is rapidly removed in patients who have an underlying non-
symptoms with pharmacotherapy includes the use of opioids compliant lung. Patients who have chest tubes inserted should
to manage both pain and dyspnea, as well as anxiolytics to receive intrapleural bupivacaine or epidural and intravenous
control concomitant anxiety.34 (IV) conscious sedation, as the procedure can be moderately
If the patient is to have a chest tube placed or other invasive to severely painful.34,74,7681
procedures to drain the uid or to prevent uid reaccumula-
tion, the nurse must aggressively manage the patients pain Pleurodesis
and anxiety. Educating the patient about what to expect, stay-
ing with them during the procedure and medicating them pre- Chest radiography is used to monitor the position of the tho-
emptively are important aspects of palliative nursing care. Use racostomy tube after thoracostomy is completed. It is thought
of patient-controlled analgesia (PCA) for pain management is that tube irritation of the pleural cavity may encourage locula-
appropriate. Unfortunately, pain assessment and management tions, which can lessen the effectiveness of potential sclerosing
is frequently not recognized as a priority when patients agents.57 Current evidence indicates that it is not necessary
undergo these procedures. to wait for drainage to fall below a certain level, and that the
sclerosing agent can be injected as soon as the lung is fully
Thoracentesis Alone reexpanded.76 If the lung fails to expand and there is no evi-
dence of obstruction or noncompliant lung, additional chest
Thoracentesis has been shown to relieve dyspnea associated tube placement may be considered. Fibrinolysis with uroki-
with large pleural effusions.64 When thoracentesis is under- nase or streptokinase may improve drainage in those cases
taken, relief of symptoms may rapidly occur, but uid reaccu- where uid is still present or is thick or gelatinous.82 Intra-
mulates quickly, usually within 3 to 4 days, and in 97% of pleural instillation of urokinase 100,000 units in 100-mL 0.9%
patients, within 30 days.71 The decision to perform repeated saline can be attempted, and the chest tube clamped for 6
thoracenteses should be tempered by the knowledge that risks hours, with suction then being resumed for 24 hours. Once the
include empyema, pneumothorax, trapped lung from inade- pleural uid has been drained and the lung is fully expanded,
quate drainage and/or loculated uid, and the possibility of pleurodesis may be initiated. This can usually take place the
increasing malnutrition as a result of the removal of large day after chest tube insertion.36,74,8385
amounts of protein-rich effusion uid.57 The purpose of pleurodesis is to administer agents that
Repeated thoracenteses rarely provide lasting control of cause inammation and subsequent brosis into the pleural
malignant effusions.7274 There are no studies that compare cavity to produce long-term adhesion of the visceral and pari-
repeated thoracenteses to other management approaches.2 etal pleural surfaces. The goal of this procedure is to prevent
Instead of a second thoracentesis, a thoracostomy with pleu- reaccumulation of pleural uid.35,72,86 Various sclerosing agents
rodesis should be considered.47 It can be used to reduce adhe- are used to treat MPE. They include bleomycin, doxycycline,
sions, draw off uid, and initiate drainage, all at the same time. and sterilized asbestos-free talc.76 The overall response rate to
chemical pleurodesis is 64%.76
Tube Thoracostomy and Pleurodesis
Pleuroperitoneal Shunt
Palliative treatment, especially for those with a life expectancy
of months rather than weeks, is best accomplished by per- This procedure is useful for patients who have refractory MPE
forming closed-tube thoracoscopy, using imaging guidance despite sclerotherapy.29,72,73,8789 Two catheters are connected by
with smaller bore tubes.47 The goal of this therapy is to drain the a pump to a chamber between the pleural cavity and the peri-
pleural cavity completely, expand the lung fully, and then to toneal cavity. Manually pushing the pumping chamber moves
instill the chemical agent into the pleural cavity. However, if uid from the pleural cavity to the peritoneal cavity. Releasing
there is a large effusion, only 1000 mL to 1500 mL should be the compression moves the uid from the pleural cavity into
drained initially.47 Too-rapid drainage of a large volume of the chamber.
uid can cause reexpansion pulmonary edema, and some The major advantage of this device is that it can be used on
patients have developed large hydropneumothoraces follow- an outpatient basis and allows the patient to remain at home.
ing rapid evacuation of uid.47 The thoracoscopy tube should Its disadvantages include obstruction risk, infection, tumor
then be clamped for 30 to 60 minutes. Approximately 1000 mL seeding, general anesthesia is needed for placement, and the
device requires motivation and ability on the part of the patient possible side effects or complications that may occur. This not
to operate it. Most patients with advanced disease are unable to only allows for informed consent but also may help to reduce
physically overcome the positive peritoneal pressure required to anxiety and thus decrease dyspnea.94
pump the device. Pumping is required hundreds of times a A variety of nonpharmacological techniques can relieve the
day, and therefore this device is not likely to be useful in those patients dyspnea and pain and can be used in combination
who are close to death.90 with opioids and anxiolytics, as well as concurrently with
medical treatment. These approaches include positioning the
Pleurectomy patient to comfort, using relaxation techniques, and providing
oxygenation as appropriate.94 Aggressive pain assessment and
Surgical stripping of the parietal pleura, with or without lung monitoring are particularly important for patients who receive
decortication (if the underlying lung is trapped), is more than invasive procedures.
90% effective, but it has a high complication rate67,72 and
should be reserved for only those who have a reasonable life
expectancy and physical reserve to withstand surgery.29,32 o]o]o]
Video-assisted thoracoscopy (VATS) and pleurectomy have been PERICARDIAL EFFUSION
performed successfully in small selected groups of patients.91
However, it is likely to be an inappropriate choice in the pallia-
9=
tive care patient at end of life.
case study 3
Mr. S, a Patient with Leukemia in Remission
Indwelling Pleural Catheters
Mr. S, a 28-year-old married man with a diagnosis of
Indwelling pleural catheters can be placed under local anes- leukemia, has been in remission following a second induction
thesia.34 Those who meet criteria for ambulatory therapy, that therapy. His sperm had been banked before starting therapy,
is, those with symptomatic, unilateral effusions, and who have and he and his wife have a baby girl. He is now rehospitalized
a reasonable performance status may benet from this ther- in blast crisis. When you ask his oncologist if end-of-life dis-
apy. It has been suggested that tunneled pleural catheters may cussions have been held with the family, he tells you, Im
permit long-term drainage and control of MPE in more than pulling out all the stops on this one. Hes going on another
80 to 90% of patients.36,92,93 These catheters can be used to treat clinical trial. His wife draws you aside and says, Dont tell
trapped lungs and large locules. Spontaneous pleurodesis may him that I told you this, but hes been coughing a lot more at
occur in up to 40% of patients. home lately, and Ive noticed that he cant seem to catch his
Small-bore tubes attached to gravity drainage bags or vac- breath. He wont let me tell the doctor. Im afraid and I dont
uum drainage have been reported to be successful on an out- know what to do. You begin your nursing assessment and
patient basis.47 Rare complications include tumor seeding, notice that the patient is tachycardic and anxious. You try to
obstruction, infection, cellulitis of tract site, and pain during listen to his heart but the sounds are very faint. You are con-
drainage. If spontaneous pleurodesis does not occur, then cerned, but he says, Lets get this chemo going. Ive got a
continuing drainage may present management challenges. daughter to get home to.
This treatment offers the potential for better quality of life and o]
reduction in overall health care costs.
Key Points
Subcutaneous Access Ports Malignant pericardial effusions occur in less that 5% of patients with
cancer, but the incidence may be nearer to 20% in patients with
In this procedure a fenestrated catheter is placed in the pleural lung cancer.
cavity. It can be accessed for repeated drainage without risk of Effusions usually develop in patients with advanced disease and are
pneumothorax or hemothorax.47 Complications include occlu- usually a poor prognostic sign.
sion, kinking, and wound infection. The clinical features depend on the volume of pericardial uid, the
rate of accumulation of uid, and the underlying cardiac function.
Nursing Management Dyspnea is the most common presenting symptom.
Dyspnea and anxiety are primary symptoms experienced by Denition

the patient who has a pleural effusion. When invasive diagnos-
tic procedures are being considered, these choices should be A pericardial effusion is dened as an abnormal accumulation of
guided by the stage of disease, prognosis, the risk/benet ratio uid or tumor in the pericardial sac.95 Pericardial effusions can
of tests or interventions, pain-management considerations, lead to life-threatening sequelae. They can be caused by malig-
and the desires of the patient and family.94 The nurse can edu- nancies and their treatment, and by nonmalignant conditions.
cate the patient and family about each procedure, including its Pericardial effusions can lead to cardiac tamponade, which, if
purpose, how it is carried out, how pain will be addressed, and not treated, will cause cardiovascular collapse and death.95
Epidemiology compressed. Less blood volume returns to the right side of the
heart, thus increasing venous pressure. As the ventricles are
Malignant disease is the most common cause of pericardial further compressed, the heart cannot ll adequately, which
effusions.96 Pericardial effusion is most commonly associated leads to decreased stroke volume and cardiac output, and poor
with lung and breast cancer, leukemia, and lymphoma.96 perfusion throughout the body. The body attempts to com-
Twenty-ve percent to 50% of all patients who require surgical pensate by activating the adrenergic nervous system to keep
pericardial drainage have malignant pericardial involvement.96 the heart stimulated and its chambers lled with circulating
Metastatic spread or local extension from esophageal tumors blood volume. Heart rate increases, veins constrict, and the
and from sarcomas, melanomas, and liver, gastric, and pan- kidneys increase sodium and uid retention. The heart ulti-
creatic cancers can also occur.97100 Many pericardial effusions mately is overwhelmed due to increased uid, decreased ll-
are asymptomatic and are discovered only on autopsy.101 Up to ing, and decreased cardiac output, which leads to hypotension
40% of cancer patients who have a symptomatic pericardial and circulatory collapse.10,110,111
effusion will have a benign cause of the effusion.57 Nonmalig- Pericardial effusion can develop gradually over a period of
nant causes of pericardial effusions include pericarditis, con- weeks or months. The pericardium becomes more compliant,
gestive heart failure, uremia, myocardial infarction, and stretching to accommodate as much as 2 liters or more of
autoimmune disease, such as systemic lupus erythematosus. uid, with minimal effect on pericardial pressure. This is
Other causes are infections, fungi, virus, tuberculosis, hypothy- known as the stress relaxation phenomenon. Unfortunately,
roidism, renal and hepatic failure, hypoalbuminemia, chest patients with chronic pericardial effusions may not exhibit
trauma, aneurysm, and complications of angiographic and physical signs of cardiac tamponade until compression of the
central venous catheter procedures.102,103 heart and surrounding structures occurs, leading to sudden,
A treatment-related cause of pericardial effusion is radia- life-threatening cardiac decompensation.113115
tion therapy to the mediastinal area of more than 4000 cGy,
which can lead to pericarditis and possible cardiac tampon- Signs and Symptoms
ade.99,104,105 The anthracycline-based chemotherapies, such as
doxorubicin, can also cause pericardial effusions.106 Pericardial tamponade that results from metastatic disease has
a gradual onset that may be chronic and insidious.9,107,114 Vague
Pathophysiology symptoms may be reported. Early in the decompensation pro-
cess it may be difcult to differentiate symptoms of cardiac
The heart is covered by a thin sac called the pericardium. dysfunction from the effects seen in advancing cancer. The
There are usually 15 to 50 mL of uid between the pericardium severity of symptoms is related to volume of the effusion, rate
and the heart itself.57 Pericardial uid originates in lymphatic of accumulation, and the patients underlying cardiac func-
channels surrounding the heart and is reabsorbed and drained tion.10,99,111,116 Generally, rapid accumulation of uid is associ-
by the lymph system into the mediastinum and into the right ated with more severe cardiac tamponade. The most powerful
side of the heart.10,11 This uid minimizes friction, provides a predictor of the development of cardiac tamponade is the size
barrier against inammation, supports the chambers of the of the pericardial effusion.117
heart, and maintains the hearts position in the chest against Dyspnea is the most common presenting symptom.118,119
accelerational and gravitational forces.107110 A pericardial effu- The patient may complain of the inability to catch his or her
sion occurs when there is excessive uid in this space. This breath, which progresses from dyspnea on exertion to dyspnea
uid causes increased pressure to build in the pericardial sac, at rest. In advanced stages, the individual may be able to speak
and the heart cannot ll or pump adequately. A pericardial only one word at a time. Chest heaviness, cough, and weakness
effusion refers to the increased uid or tumor in the pericar- are also symptoms.57 Pressure on adjacent structures, that is,
dial sac. Cardiac tamponade is the physiological hemody- the esophagus, trachea, and lung may increase.120
namic response of the heart to the effusion.9 Tachycardia occurs as a response to decrease in cardiac out-
Malignancies can cause effusions in the pericardial space put. A narrowing pulse pressure (difference between systolic
by: (1) blocking lymph and blood drainage and preventing and diastolic blood pressure) may be seen when blood backs
their resorption, (2) producing excess uid in the space, (3) up in the venous system, causing the systolic blood pressure to
bleeding into the space, and (4) growing tumor into the space. decrease and the diastolic blood pressure to increase.9,120 Com-
The pericardial sac can hold up to 1800 mL of uid before the pression of the mediastinal nerves may lead to cough, dyspha-
heart begins to decompensate.111,112 Thus, volume of uid and gia, hoarseness, or hiccups.11 Increased venous pressure in the
distensibility will affect the impact of effusion on intrapericar- chest may lead to gastrointestinal (GI) complaints, such as
dial pressure. nausea.121,122 Retrosternal chest pain that increases when the
Cardiac tamponade occurs when the heart cannot beat patient is supine and decreases when he is leaning forward
effectively because of excess pressure being exerted on its mus- may occur but is often not present.110,120 Engorged neck veins,
cle.99,102 As the pressure of uid in the pericardial sac increases, hepatomegaly, edema, and increased diastolic blood pressure
the heart chambers are compressed. First, the right side of are late signs of effusion. Anxiety, confusion, restlessness,
the heart, including the right atrium and right ventricle, is dizziness, lightheadedness, and agitation related to hypoxemia
may be present as the process progresses.10,13,99,110,118,123 Poor echocardiogram (2-D echo) is the most sensitive and precise
cardiac output will lead to complaints of fatigue and weakness. test to determine if pericardial effusion or cardiac tamponade
As the effusion increases and the heart begins to fail, symp- is present.22,118 It can be used at the bedside and is noninvasive.
toms worsen and dyspnea and orthopnea progress. Increasing Some cancer patients may have both pericardial effusions
venous congestion leads to peripheral edema. As cerebral per- and pleural effusions.110,118 Pleural effusions can mimic the
fusion worsens and hypoxemia increases, confusion increases. signs and symptoms of pericardial tamponade, causing symp-
Ultimately, there is cardiovascular collapse, anuria, and toms of dyspnea and respiratory distress. Chest x-ray may hide
decreased tissue perfusion, which causes obtundation, coma, or mimic the presence of pericardial tamponade, so depending
and death.10 Patients with chronic symptomatic pericardial on the goals of care, a 2D-echo should be performed to differ-
effusions will often exhibit tachycardia, jugular venous disten- entiate between these phenomena and to detect decompensa-
sion, hepatomegaly, and peripheral edema.120 tion of the heart.
When examining the patient, one should listen for early Other tests, including MRI and CT, can be used to detect
signs of cardiac tamponade: (1) mufed heart sounds and per- effusions, pericardial masses and thickening, and cardiac tam-
haps a positional pericardial friction rub, and weak apical pulse; ponade. However, these tests do not indicate how well the heart
(2) presence of a compensatory tachycardia; (3) abdominal is functioning, and they have limited use due to safety and
venous congestion and possible peripheral edema; and (4) a comfort concerns in very ill patients.118,120 If echocardiography
fever.13,110,118,120,124 The signs and symptoms of pericardial effu- is not available, a cardiac catheterization, which will detect
sion and cardiac tamponade may be mistaken for those of other depressed cardiac output and pressure levels in all four cham-
pulmonary complications or pleural effusions. Many cancer bers of the heart, may be considered on a case-by-case basis.120
patients have both pleural and pericardial effusions.110,118 Unfor-
tunately, symptoms of cardiac tamponade may be the rst indi- Medical and Nursing Management
cation of the presence of pericardial effusion.
The triad of hypotension, increased jugular venous pres- Options for medical management include pericardiocentesis
sure, and quiet heart sounds that are diagnostic for pericardial with or without catheter drainage, pericardial sclerosis, percu-
effusion occurs in less than a third of patients.125 If clear lung taneous balloon pericardiotomy, pericardiectomy, pericardio-
elds are present, this can help the clinician differentiate peritoneal shunt, tunneled pericardial catheters, and radiation
between pericardial effusion and congestive heart failure.125 therapy and chemotherapy, and aggressive symptom manage-
Pulsus paradoxus is a cardinal sign of cardiac tamponade. It ment without invasive procedures.
occurs in 77% of those with acute tamponade and in only
about 30% of those with chronic pericardial effusion.114,125 Pericardiocentesis
However, its absence does not rule out pericardial effusion.
Pulsus paradoxus is a fall in systolic blood pressure of greater The most simple, safe, and effective (97%) treatment is
than 10 mmHg with inspiration. Normally, blood pressure echocardiography-guided pericardiocentesis, with a proce-
lowers on inspiration, but when the heart is compressed it dural morbidity of 2% to 4% and mortality of 0%.127130 Since
receives even less blood ow. The resulting lowered volume more than 50% of pericardial effusions reoccur, it is recom-
and output result in a greater decrease in blood pres- mended that a 60-cm pigtail catheter (6 to 8 French) be threaded
sure.110,121,126 Hepatojugular reux is a late sign of cardiac over the needle to allow for drainage of uid over time.120,127,131
tamponade.10,123 The procedure can be performed emergently at the bedside,
Late in the process of deterioration, diaphoresis and cyanosis blindly, or with ECG guidance, but it should not be attempted
are also present. The patient develops increasing ascites, in this manner except in extreme emergencies.132 Adverse
hepatomegaly, peripheral edema, and central venous pressure. complications of the blind procedure include myocardial lac-
Decreased renal ow progresses to anuria. Further impairment eration, myocardial stunning, arrhythmias, pneumothorax,
in tissue perfusion leads to loss of consciousness, obtundation, abscess, and infection.95,133,134 The failure rate of this procedure
coma, and death.9,10,13,99,110,118 is 10% to 20% because of posterior pericardial loculation or
catheter obstruction.
Diagnostic Procedures
Pericardial Sclerosis
Initially, a standard chest x-ray is likely to show a change in the
size or contour of the heart and clear lung elds.57 A pleural Patients who experience pericardial tamponade face a 50%
effusion may be evident in up to 70% of patients. Chest x-ray rate of recurrence when the underlying disease is not effec-
can also demonstrate mediastinal widening or hilar adenopa- tively treatable.120 Pericardial sclerosis should be considered
thy. This diagnostic tool is cost-effective, minimally invasive, in those patients whose disease is not being actively or effec-
readily available, and may detect tamponade before the patient tively treated. Pericardial sclerosis is dened as the instilling
becomes symptomatic. However, when used alone, it is not of chemicals through an indwelling catheter into the peri-
specic enough to diagnose pericardial effusions and does cardial sac for the purpose of causing inammation and bro-
not indicate the level of heart decompensation.10,121 2-D sis, to prevent further uid reaccumulation. Doxycycline and
bleomycin are the most common drugs instilled into the peri- effusions. In this case, a thoracoscope is introduced into the
cardial space.126 A common side effect of sclerosing therapy is left or right chest and a pericardial window is performed
severe retrosternal chest pain, especially with talc adminis- under thoracoscopic vision.139,140 The pleura and pericardium
tration, and sometimes with bleomycin therapy.126 A preemp- can be visualized, tissue diagnosis can be obtained, and locu-
tive pain management plan is essential for the well-being of lated effusions can be drained.141 It has a 100% long-term suc-
the patient. Arrhythmias, catheter occlusion, and transient cess rate, and there is no signicant morbidity or mortality
fever of up to 38C without associated bacteremia are also associated with its use.120
associated complications, primarily of talc and bleomycin
therapy.114,135,136 While sclerosing therapy may initially be suc- Radiation Therapy and Chemotherapy
cessful, that is, evidence of disappearance of effusion or
absence of tamponade symptoms for more than 30 days, mul- In some cases, radiation therapy can be used to treat chronic
tiple instillations may be necessary for true success.120 The use effusions after the pericardial effusion has been drained,120 and
of thiotepa has been recommended for pericardial instillation when tamponade is not present. It can be effective in radiosen-
because it can be instilled into the drained space, is not associ- sitive tumors such as leukemias and lymphomas, but is less so
ated with severe pain, and is reasonably effective.126 A major in solid tumors.114 Systemic chemotherapy can be considered
complication is pericardial constriction. A serious discussion if the malignancy is chemotherapy sensitive.119
of risks, benets, side effects of the therapy, and its impact on Chronic pericardial effusions and their management can be
quality of life should take place in the context of end-of-life challenging. Treatment of symptomatic chronic pericardial
decision-making. effusions will depend on patient prognosis, extent of symp-
toms, presence of concurrent medical conditions, and general
Percutaneous Balloon Pericardiotomy condition. In many cases, treatment may be planned and car-
ried out in a less urgent manner, keeping in mind the long-term
This is a safe, nonsurgical method that can be used to relieve the benets and side effects of interventions. Optimal treatment
symptoms of chronic recurrent pericardial effusions.120 It is per- should focus on relieving symptoms caused by pressure on
formed in a cardiac catheterization lab under uoroscopic guid- adjacent structures and, in the case of underlying malignancy,
ance using IV conscious sedation and local anesthesia. A the rst priority should be the promotion of comfort. When
guidewire is inserted into the pericardial space, and a small pig- choosing a plan, the ability to treat the underlying cause, the
tail catheter is inserted over the wire. The wire is removed and long-term prognosis, and patient comfort should be of great-
some pericardial uid is withdrawn. Next, the pigtail catheter is est importance.120
removed and replaced with a balloon-dilating catheter that is
advanced into the pericardial space and inated. A pericardial Nursing Management
drainage catheter is left in place and is removed when there is
less than 100 mL of drainage daily.137 Patients have reported The priority goals in managing this condition are to provide
experiencing severe pain during and after this procedure. A plan comfort, to promote pain relief, and to reduce anxiety. The
for aggressive pain management must be in place before this nurse should know both early and late signs of cardiac tam-
procedure and rapidly implemented if pain occurs. ponade. Early recognition of these signs and their implications
Fever and pneumothorax are the most common complica- is most important because early intervention may prevent life-
tions.137 Pleural effusion has also been associated with the proce- threatening sequelae.9
dure. It is suggested that percutaneous balloon pericardiotomy Aggressive symptom management includes the administra-
can be used in place of surgical drainage in patients with malig- tion of opioids and anxiolytics to reduce pain and anxiety. If
nancy and a short life expectancy.138 invasive cardiac procedures are carried out in an emergency at
the bedside, the nurse should be present to provide support to
Surgical Pericardiectomy the patient and family, to control pain and anxiety, and to
monitor vital signs as indicated.9
Another option is to surgically create a pericardial window
(partial pericardiectomy), a small opening in the pericardium
and suture it to the lung. This allows pericardial uid to drain o]o]o]
out of the pericardial cavity, especially loculated effusions.126 HEMOPTYSIS
When other procedures fail and the patient is expected to have
long-term survival and good quality of life, partial or complete
9=
pericardiectomy may be considered.120
case study 4
Mr. J, a Patient with Bronchogenic Lung Cancer
Video-Assisted Thoracoscopic Surgery
Mr. J, a 56-year-old married man, has a long history of ciga-
Video-assisted thoracoscopic surgery (VATS), a minimally rette smoking. He recently has been diagnosed with bron-
invasive procedure, can be used to manage chronic pericardial chogenic lung cancer. Last week he had one brief episode of
moderate hemoptysis at home that was stopped with laser occurs most often from proximal endobronchial tumors that
treatment in the emergency room. He has now been admitted are not amenable to surgical intervention. Prognosis is usually
to your unit for uncontrollable cough, dyspnea, and chest grim in the case of end-stage lung disease and in the setting of
pain. His wife of 30 years and their two grown children are at massive hemoptysis.
his bedside. The oncologist has just told them that any fur-
ther treatment will be futile. During your initial nursing Pathophysiology
assessment, Mr. J tells you, Im not afraid of dying. If you
can just keep me comfortable and help my family, Ill be Each lung is supplied with blood by way of two circulatory sys-
happy. The family agrees with his desire not to be resusci- tems. Pulmonary circulation delivers blood under low pres-
tated, and plans are being made for him to return home sure from the right ventricle to the alveolar capillaries, where
under hospice care. His wife asks you, The oncologist told oxygen and carbon dioxide are exchanged. Bronchial circula-
me that there might be more bleeding from his lungs. What tion arises from the systemic circulation that branches off the
do we need to be prepared for at home? aorta, which delivers blood to the lungs under high pressure.
o] These systems anastomose in precapillary pulmonary arteri-
oles and pulmonary veins.146
Key Points The bronchial venous system returns blood to the heart by
Hemoptysis occurs commonly in patients with advanced cancer and two pathways: (1) blood is returned to the right atrium by way
is most commonly due to malignant inltration or infection. of the azygous, hemiazygous, or intercostal veins, and
Hemoptysis should be distinguished from gastrointestinal and (2) blood is returned to the left ventricle by way of the pul-
nasopharyngeal bleeding. monary veins. The second pathway carries the bulk of bronchial
Hemoptysis frequently provokes considerable anxiety. venous return to the heart.146
Massive hemoptysis, while rare, is a life-threatening crisis for In the setting of inammation, tumor, or infection, the
patient, family, and staff. Massive hemoptysis occurs in fewer bronchial vasculature develops new vascularization pathways.
than 5% of cases, but the mortality rate is 85% if surgery is not Bronchial blood ow increases as the result of increases in
feasible. both size and number of these collateral vessels. When these
Skilled palliative nursing intervention includes provision of 24-hour vessels are damaged by inammation, malignancy, or other
psychological support and guidance. injury, blood ow is increased and this raises pulmonary vas-
cular pressure. Hemoptysis occurs in the setting of multiple
Denition collateral vessels, high vascular pressure, and damaged, enlarged,
and diseased airways. 146,150,151
Hemoptysis is dened as blood that is expectorated from the In patients who have HIV disease, bacterial pneumonia and
lower respiratory tract. Hemoptysis can be classied according infections cause 63% of episodes of hemoptysis. Kaposis sar-
to the amount of blood expectorated: (1) mildless than 15 to coma causes 10% of episodes, and pulmonary embolism
20mL in a 24-hour period, (2) moderategreater than 15 to 20 causes 4% of episodes.152 Patients on anticoagulant or throm-
mL but less than 200 mL in a 24-hour period, and (3) massive bolytic therapy may also experience hemoptysis.149,153
greater than 200 mL to 600mL in a 24-hour period.142 The pri-
mary risk to the patient is asphyxiation from blood-clot Diagnostic Procedures
formation obstructing the airway rather than from exsan-
guination. Massive hemoptysis carries a high mortality rate if Flexible fiberoptic bronchoscopy is initially the quickest and
not treated. surest way to visualize the source of bleeding in the upper
lung lobes and to localize it in the lower respiratory tract.143
Epidemiology This procedure can be done at the bedside without putting
the patient under general anesthesia, and it can also visualize
Tuberculosis is the most common worldwide cause of hemop- distal airways.146 If there is brisk bleeding, the rigid broncho-
tysis.143 The most common causes of hemoptysis in the United scope can suction more efficiently, remove clots and foreign
States are bronchitis, bronchiectasis, and bronchogenic carci- bodies, allow for better airway control, and can be used to
noma.143 Other nonmalignant causes of hemoptysis are lung obtain material for diagnostic purposes.154 In some cases,
abscess, sarcoidosis, mycobacterium invasion, emphysema, bronchoscopy may locate the area of bleeding but not the
fungal diseases, and AIDS. There is no underlying cause found direct source of bleeding. In this case, the segment of affected
in 15% to 30% of hemoptic episodes.143-145 tissue may be purposely suctioned until it collapses.43 Bron-
Metastatic lung disease caused by other primary tumors is choscopy should not be undertaken if there is evidence of
associated with nonfatal hemoptysis.146 Tumors in the trachea pulmonary embolism, pneumonia, or bronchitis, or when
usually cause obstructive symptoms rather than massive bleed- the patients condition is so poor or unstable that no fur-
ing.147 Massive hemoptysis occurs in fewer than 5% of cases, but ther intervention would be undertaken no matter what the
the mortality rate is 85% if surgery is not feasible.148,149 Bleeding results.151
If treatment is to be initiated, the combination of bron- endobronchial balloon tamponade, epinephrine injection, and
choscopy and high-resolution CT can identify the cause of iced saline lavage, and, in very rare cases, surgical resection.
hemoptysis in 81% of patients. It is also quick, noninvasive, and
less costly than other modalities.143 If pulmonary embolism is Radiation Therapy
suspected and therapy is to be initiated, a ventilation-perfusion
scan may be warranted.155 External-beam radiation therapy can stop hemoptysis in more
than 80% of cases, especially in those patients who have unre-
Signs and Symptoms sectable lung cancers.157 The goal is to provide therapy in the
shortest time period possible, at the lowest dose to achieve
Respiratory complaints that raise suspicion of bleeding into symptom control while minimizing side effects. Complica-
the lungs may include cough, dyspnea, wheezing, chest pain, tions of therapy are radiation brosis, and, unfortunately,
sputum expectoration, and systemic clues, such as fever, massive hemoptysis.158
night sweats, and weight loss. Clues to nasopharyngeal bleed- Endobronchial brachytherapy has been effective in some
ing as the possible source include frequent nosebleeds, throat patients who have failed previous external-beam radiation
pain, tongue or mouth lesions, dysphonia, and hoarseness.156 attempts.159,160 Brachytherapy and bronchoscopy laser therapy
Clues to GI bleeding as the possible source include the pres- have also resulted in resolution of hemoptysis. Results have
ence of dyspepsia, heartburn, dysphagia. Coffee grounds- not been as favorable in patients who have failed previous
colored vomitus and blood in vomitus does not rule out external-beam radiation therapy or when combined with laser
hemoptysis because blood from respiratory sources can be therapy.161 Side effects associated with brachytherapy, particu-
swallowed. Patients and family members should be asked to larly high-dose brachytherapy, include mucositis, stula for-
describe the color of blood, and should be asked about any mation, and fatal hemoptysis.162-164 The benets of this
changes in color and pattern of bleeding in vomitus and treatment should be carefully weighed against potential side
stool.156 effects and their impact on quality of life, particularly in those
During an active bleeding episode, a focused examination patients who have short-term prognoses.
should be performed as quickly as possible. If possible, the
nasopharynx, larynx, and upper airways should be thoroughly Endobronchial Tamponade
visually examined to rule out an upper airway source of bleed-
ing.143,154,156 If bleeding is brisk and views are obstructed, In this procedure, exible bronchoscopy is used to nd the
examination may best be accomplished with bronchoscopy. bleeding site after the site has been lavaged with iced saline. A
The patient may be coughing or vomiting blood, and may be balloon catheter attached to the tip of the bronchoscope is
short of breath. If possible, sputum, blood and vomitus should placed on the site and is then inated and left on the bleeding
be examined. 143,151 Some patients may not yet have a diagnosis site for 24 to 48 hours.165 In the case of life-threatening hemop-
of malignancy. In these cases one should note clubbing of n- tysis, a rigid bronchoscope should be used. This is not a uni-
gernails and presence of cervical or supraclavicular adenopa- formly successful procedure, and should be considered a
thy. This may indicate the presence of a malignancy.156 temporizing measure only.143
Massive bleeding may take place in the lung without the
presence of hemoptysis, so listening to lung sounds is very Laser Coagulation Therapy
important. Auscultation of the lungs may reveal localized
wheezing, an indication of possible airway obstruction.156 Fine In the case of obstructing tracheal tumors, Nd-YAG photoco-
diffuse rales and asymmetric chest excursion may indicate agulation may control bleeding from endobronchial lesions,
the presence of an infectious or consolidative process.156 If and it has a response rate of 60%.164,166 Anecdotal reports of
petechiae and ecchymosis are present, then there should be the effectiveness of electrocautery to control hemoptysis have
strong suspicion that a bleeding diathesis is present.156 been reported; argon plasma coagulation has led to resolution
of hemoptysis for at least a 3-month followup. However,
Medical and Nursing Management highly vascular tumors are at risk for bleeding when exposed
to laser therapy.165
If the episode of bleeding is severe and the goal is active treat-
ment or prolongation of life, then the primary focus is to main- Bronchial Arterial Embolization
tain an adequate airway. This will usually require endotracheal
intubation, which may have to be performed immediately at the When an endoscopically visualized lung cancer is the source of
bedside, and oxygenation. If bleeding can be localized and con- bleeding, bronchial artery embolization is effective as a pallia-
trolled quickly, a short period of intubation may be considered tive intervention. It stops bleeding in 77% to 93% of cases.154,167
if it will allow for improved quality of life.146 Bronchial artery embolization, preceded by bronchoscopy,
Specic methods of treatment include radiation therapy, involves injecting a variety of agents angiographically into the
laser coagulation therapy, bronchial arterial embolization, bronchial artery to stop blood ow.151,168 Thirty percent of
patients will rebleed within the rst or later months, and o]o]o]
repeated embolizations may be required.168,169 SPINAL CORD COMPRESSION
There are major risks of this procedure, including trans-
verse myelitis, paraplegia, ischemic colitis, severe pneumonia,
9=
esophagobronchial stula formation, and temporary severe
case study 5
retrosternal pain.170 Superselective catheterization now reduces
Mr. L, a Patient with Prostate Cancer
the chance of inadvertently catheterizing the spinal cord
branch of the bronchial artery, which has led to spinal cord Mr. L, a 79-year-old widowed ex-postal worker, has been
paraplegia in the past.171 The risks of rebleeding and the treated with hormone therapy for his prostate cancer for the
prospect of having repeated embolizations should be carefully past 2 years. Youve seen him once since he was discharged
reviewed and discussed with the patient and family before from the hospital 6 months ago. I told them I didnt want
carrying out this therapy. any of that chemotherapy stuff, and I didnt want to go under
the knife either. He lives with his 44-year-old divorced
Endobronchial Epinephrine Injections daughter, who works two jobs and is home only at night.
Mr. L has done well until the last few weeks, when he began
A 1:10,0000 epinephrine solution may be instilled on visual- to complain of increasing low-back pain, especially at night.
ized lesions to constrict veins and reduce bleeding. Vaso- Hes been taking Tylox for the pain and says it helps some.
pressin and chlorpromazine have also been used in this You receive a call from Mr. L, who tells you I took a bit of a
procedure, which is performed in patients who are not candi- fall last night, but Im OK now. Could you come out and
dates for surgery and when bronchial artery embolization is check me over? When you arrive at his house, you notice
not available.143,154 that Mr. L has a bruise under his right eye but no other visi-
ble injuries. He tells you I just got weak and slid to the oor.
Iced Saline Lavage I feel ne now. On further questioning, you learn that his
back pain has markedly increased in severity at night,
Iced saline solution lavage has been used as a temporary non- although it decreases when he stands. In addition, Mr. L
standard measure to provide improved visualization and complains of more difculty in moving his bowels and some
localization of the bleeding site. It does not appear to improve difculty in urinating. He attributes the pain to just an old
outcomes.143,154 disk problem I had some years back. He nally admits that
hes been having more difculty walking lately, but doesnt
Surgery want to worry his daughterShes got enough on her mind
as it is. Before you can make any recommendations, Mr. L
In rare cases, some patients who continue to have life- says, I dont want to go back to the hospital for any tests. I
threatening hemorrhage after receiving other therapies may dont want them to do anything else to me.
be considered as candidates for surgical intervention. Only o]
those whose life expectancy, condition, ability to tolerate
major surgery, and ability to maintain an airway make them Key Points
suitable candidates, should be considered. It is important to Pain is the primary presenting symptom of spinal cord compression.
remember that most lung cancers are well advanced at diagno- It may be present long before neurological dysfunction occurs.
sis and that undertaking this procedure may not meet quality- The pain is classically worse when lying at and improved when
of-life goals for those with short-term prognoses.143 upright.
In a patient with cancer, increasing back pain that is worse when
Palliative Care lying at and improved when standing is presumed to be cord
compression until proven otherwise.
When a decision has been made to forgo aggressive treatment Early detection and treatment may prevent permanent loss of
measures, then promotion of comfort for the patient is the function. It is therefore considered a medical emergency.
primary goal. Death from massive hemoptysis is usually The use of steroids and radiation therapy in patients with far
rapid, occurring within minutes. However, even when the advanced cancer can decrease the pain and usually preserve
family has been carefully prepared for this possibility and function. Steroids alone can usually decrease pain and preserve
coached in a step-by-step manner in what to do, family mem- function in those who are close to death and do not want to undergo
bers inevitably remain unprepared and distraught if a massive radiation therapy, even in truncated form.
hemorrhage does occur, especially in the home, without med-
ical personnel around. Preemptive planning includes anxi- Denition
olytic and opioids readily available in the home, a 24-hour
palliative care number to call for immediate guidance and Spinal cord compression (SCC) is compression of the thecal
support, and dark-colored towels to make the viability of sac at the level of the spinal cord or cauda equina. Spinal cord
blood less overwhelming. injury may cause progressive and irreversible neurological
damage and requires immediate intervention to prevent dis- osteoblastic, where lesions invade the bone marrow and cause
ability. SCC in the presence of malignancy often carries a poor bone development, tumor invasion, and collapse of the verte-
prognosis, with a life expectancy of 3 months or less.172 bral body, which then pushes tumor or bone fragments into
the spinal cord.10,182,184 Neurological decits caused by SCC
Epidemiology include direct compression on the cord or cauda equina, vas-
cular supply interruption, or pathological fracture, causing
Compression of the spinal cord and cauda equina is a major vertebral collapse. When nerve tissue dies, neurological regen-
cause of morbidity in patients with cancer. It occurs in approx- eration is not always possible. Function may be quickly and
imately 5% to 10% of patients with malignant disease,173,174 and irreversibly lost.
is most commonly associated with metastatic disease from
tumors of the breast, lung, and prostate. Less than 50% of Diagnostic Procedures
patients will regain functional losses due to SCC.10,174176
Compression of the spine in 85% to 90% of cases is caused Plain spinal x-rays are an excellent screening tool and can
by direct hematological extension of solid tumor cells into a determine the presence of tumor and the stability of spine.181
vertebral body.150,177180 A less common pathway is by direct They can identify lytic or blastic lesions in up to 85% of verte-
extension of tumor from adjacent tissue through the interver- bral lesions. However, false negatives can occur due to poor
tebral foramina. Tumor cells can also enter the epidural space visualization, mild pathology, or poor interpretation.177 More
directly by circulating in the cerebral spinal uid (CSF). Para- than 50% collapse, and pedicle erosion must be present before
neoplastic syndromes, leptomeningeal disease, and toxicity of x-ray can detect SCC.185,186 Epidural spread of tumor through
chemotherapy drugs can cause spinal cord syndromes.181 the foramina may not always be visualized using plain x-rays.
Nonmalignant causes of SCC include benign tumors, A bone scan may detect vertebral abnormalities when plain
degenerative, inammatory, and infectious diseases that affect lms are negative.187189
the spinal column, and from trauma, herniated disks, osteo- MRI is the imaging choice for emergent SCC.186 It is nonin-
porosis, or other structural diseases.22,181 vasive and does not require injection with contrast material. It
has an advantage over CT because it can image the entire
Pathophysiology spine, thus detecting multiple areas of compression.173,181,190
Decisions about diagnostic testing will be tempered by a num-
There are 26 vertebrae in the vertebral column: 7 cervical, ber of factors, including the potential for treatment, prognosis,
12 thoracic, 5 lumbar, 1 sacral, and 1 coccygeal. Inside this ex- patients condition, and the familys wishes for treatment.
ible protective vertebral column is the spinal cord, which is an
elongated mass of nervous tissue covered and protected by Signs and Symptoms
membranes called meninges. The outermost layer is the dura
mater, the middle layer is the arachnoid membrane, and the The presence of increasing back pain, worse on lying at and
innermost layer closest to the spinal cord is the pia mater. The improved on standing, with or without signs of bowel and
epidural space is located between the outer layer of the dura bladder impairment, in a patient with a history of cancer,
mater and the vertebral column.10 should presumed to be SCC until proven otherwise. Neuro-
The spinal cord begins where it is attached to the medulla logical function before initiation of therapy is the single most
oblongata in the brain and descends through the foramen important prognostic factor in SCC.16 Misdiagnosis of SCC
magnum of the skull until it ends at the level of the rst lum- has been attributed to poor history, inadequate examination,
bar vertebra. Lumbar and sacral nerve roots then descend and insufcient diagnostic evaluation.191 Patients who have
below the distal tip of the vertebral column and spread to the only localized back pain and a normal neurological examina-
lumbar and sacral areas. These long nerve roots resemble a tion may have more than 75% of the spinal cord compressed.
horses tail that is called the cauda equina. Thirty-one pairs of Upper motor neuron weakness may occur above the L1 verte-
spinal nerves exit from the spinal cord. 176,182,183 Transmission bral body in 75% of patients with SCC at diagnosis. Sensory
of nerve impulses travels the length of the spinal cord to and changes occur in about half of patients at presentation. Sen-
from the brain in ascending and descending tracts. Impulses sory change without pain complaint is extremely rare.
from the spinal cord to the brain travel through the anterior A thorough history should pay special attention to the
spinothalamic tracts, and impulses from the brain to the onset of pain, its location, its intensity, duration, quality, and
spinal cord travel through the lateral corticospinal tracts. what activities increase or decrease the pain.180,184,192 A history
Injury to these nerves or to the cord itself can result in sensory- of sensory or motor weakness and autonomic dysfunction
motor and autonomic impairment.176 should be evaluated and should include onset and degree of
Eighty-ve percent of SCCs are extradural in nature.9,10,174,184 weakness; heaviness or stiffness of limbs; difculty walking;
That is, they originate outside the cord itself. Extradural numbness in arms, hands, ngers, toes, and trunk; and change
metastatic tumors may be osteolytic, where lesions invade in temperature or touch. Specic questions about bowel, blad-
the marrow of the vertebrae and cause absorption of bone tis- der, and sexual function should be asked directly, because
sue, which leads to bone destruction. They may also be patients may not volunteer these symptoms, such as difculty
in passing urine or stool, incontinence of bowel or bladder, abdominal, ank, or hip pain from T12-L2 metastases; or
loss of sphincter control, and ability to obtain and maintain an (3) lateral or anterior rib pain from thoracic metastases.181
erection. Constipation usually precedes urinary retention or The sequence of neurological symptoms usually progresses
incontinence.184 in the following mannerrst there is pain, then motor
Physical examination includes observation of the spine, weakness that progresses to sensory loss, then motor loss, and
muscles, extremities and skin, and palpation and gentle per- nally, autonomic dysfunction.9 The patient will initially
cussion of vertebrae. Spinal manipulation to elicit pain complain of heaviness or stiffness in the extremities, loss of
responses should be carried out cautiously because it may coordination, and ataxia.194,195 Sensory complaints include
cause muscle spasm or further injury.181 Mental status, cranial paresthesias and numbness, and loss of heat sensation. Dys-
nerve, motor function, reexes, sensation, coordination, function begins in the toes and ascends in a stocking-like pat-
strength, and gait should be evaluated (where appropriate to tern to the level of the lesion.173 Loss of proprioception, deep
the patients status and closeness to death). Focused exami- pressure and vibration are late signs of sensory loss.10,22,123,176
nation may include performing straight leg raises until the When the cauda equina is affected, sensory loss is bilateral; the
patient feels pain, then dorsiex the foot. If this action dermatome that follows the perianal area, posterior thigh, and
increases pain down the back of the leg, this suggests that lateral aspect of the leg is involved. Late signs of SCC are
nerve root compression is present. Testing of reexes will indi- motor loss and paralysis. Loss of sphincter control is associ-
cate the presence and impact of nerve root compression on ated with poor return to functionality.10,22,176
motor ability. Cord compression may cause hyperactive deep-
tendon reexes while nerve-root compression may cause Medical and Nursing Management
decreased deep-tendon reexes. A positive Babinski sign and
sustained ankle clonus indicate motor involvement.184 The focus of management of SCC should be the relief of pain
Sensory function should be tested by assessing pain (sharp, and preservation or restoration of neurological function.
dull), temperature (hot, cold), touch (light), vibration (tuning Rapid intervention is required to prevent permanent loss of
fork test), and position senses (ngers and toes). Examination function and concomitant quality of life. The patient status
may reveal a demarcated area of sensory loss and brisk or (e.g., goals of care and closeness to death), rate of neurological
absent reexes.184 The mapping of positive sensation can be impairment, and prior radiation therapy experience are other
used to pinpoint the level of SCC, usually one or two levels factors to consider.184 Corticosteroids, surgical decompression,
below the site of compression.184 Bladder percussion and digi- radiation therapy, and adjuvant chemotherapy or hormonal
tal rectal examination will elicit retention and laxity of sphinc- therapy are the standard treatments for SCC.13,184,196
ter control, a late sign of SCC.
Pain may be reported for weeks to months before any obvi- Corticosteroids
ous neurological dysfunction.173 Pain may be local initially (in
the central back, for example), then progress to a radicular Corticosteroids decrease vasogenic edema and inammation
pattern that follows a particular dermatome.175,181 Local pain and thus relieve pain and neurological symptoms, and may
may be caused by stretching of bone periosteum by tumor or have some oncolytic effect on tumor.192 Dexamethasone is the
vertebral collapse, and is usually described by the patient as preferred corticosteroid because it is less likely to promote sys-
constant, dull, aching, and progressive in nature. Radicular temic edema caused by other steroids or to cause cognitive and
pain is caused by pressure of tumor along the length of the behavioral dysfunction, and it improves overall outcomes after
nerve root.10,123,176 The patient who reports radicular pain will specic therapy.173
describe it as shooting, burning, or shocklike in nature and There has been controversy about dosage and scheduling of
will state that it is worsened by movement, sneezing, straining, dexamethasone therapy in the management of SCC.173,185
neck exion, or by lying down. There is good evidence to support the use of high-dose ther-
A classic sign of cord compression is if pain is relieved by apy because substantially more patients are ambulatory after
sitting up or standing and is worsened by lying at. Also, if this treatment. It reverses edema and relieves back pain more
pain increases at night when the patient is lying down to sleep, rapidly. In animal studies, neurological status has improved
one should be suspicious of SCC rather than degenerative or more rapidly with high-dose therapy. 2,177,178,197200 High-dose
disk disease.173 Radicular pain is present in 90% of lum- dexamethasone is recommended in ambulatory patients with
bosacral SCC, 79% in cervical SCC, and in 55% of thoracic subclinical SCC.201
SCC.193 Radicular pain is typically bilateral in thoracic lesions, Currently, high-dose therapy regimens recommend admin-
and is often described as a tight band around the chest or istering a 100-mg IV bolus of dexamethasone, followed by 24-
abdomen, but it may also be experienced in only part of one mg dexamethasone orally QID for 3 days, then tapering the
dermatome.173,177 Nonradicular referred pain may also be asso- dose over 10 days. High-dose therapy may increase analgesia
ciated with vague paresthesias and point tenderness.173,177,181 but can also increase side effects that are signicant. These
Vigilance is called for when these radicular symptoms occur: include GI bleeding, hyperglycemia, depression and psychosis,
(1) shoulder tip pain from C7/T1 metastases; (2) anterior or myopathy, osteoporosis, and acute adrenal insufciency with
abrupt withdrawal.182 Low-dose dexamethasone therapy is o]o]o]

better tolerated but does not improve the chance of remaining HYPERCALCEMIA
ambulatory. This regimen recommends administering a
10-mg IV bolus of dexamethasone, followed by 4-mg IV QID
9=
for 3 days, then tapering the dose over 14 days.173,172 Rapid IV
case study 6
push of corticosteroids causes severe burning pain in the per-
Mrs. H, a Patient with Multiple Myeloma
ineum, and the patient needs to be warned that this will occur
but does not signify that anything is wrong. Corticosteroids Mrs. H, a 65-year-old retired LPN, has been receiving out-
are metabolized by the cytochrome P-450 system, and there patient chemotherapy for multiple myeloma. This most
are implications for interactions with other medications, par- recent treatment is under the auspices of an NCI clinical trial,
ticularly anticonvulsants. and the patient knows that her cancer is incurable. Im a
tough ol bird. Ive been around the block a few times, and I
Decompressive Surgery know whats what. They can sugarcoat it all they want. I know
this is just buying time, but if it helps somebody else, Im
The goals of surgery are to decompress neural structures, doin it. Mrs. H lives in a nearby inner-city assisted-living
resect tumor if possible, establish local disease control, achieve facility. Her children live out of state. She was brought to the
spinal stability, restore the ability to ambulate, treat pain, and hospital when her friends at the facility noticed that she has
improve quality of life. Surgery for SCC has been used to become more fatigued and lethargic over the past few days,
(1) establish a diagnosis when tissue is required for histologic complained of nausea and frequent need to urinate, and
analysis; (2) halt rapidly deteriorating function; (3) achieve seemed a little more confused than usual. You review her lab
cure for primary malignancy; (4) treat those with previously panels and notice that her ionized calcium is 11.
irradiated radio-resistant tumor and who have continuing o]
symptomatic progressive loss of function; (5) rule out infec-
tion or hematoma; (6) alleviate respiratory paralysis caused by Key Points
high cervical spinal cord lesions; and (7) decompress and sta- Hypercalcemia occurs in 8% to 10% of patients with cancer,
bilize spine structure.10,13,22,184 Benets and burden of surgery with an incidence of 40% in patients with breast cancer and
to the patient in a palliative care setting must be carefully multiple myeloma.
weighed so that the patient and family can make an informed Common presenting signs are fatigue, lethargy, nausea, polyuria,
decision. and confusion.
The combination of nausea and polyuria can lead to dehydration
Radiation Therapy and worsening of hypercalcemia.
Severity of symptoms depends on the level of free ionized calcium
Fractionated external-beam radiation therapy (XRT) to the and the speed with which the level rises.
spine is given to inhibit tumor growth, restore and preserve The serum calcium level is adjusted according to the serum
neurological function, treat pain, and improve quality of albumin in patients with signicant hypoalbuminemia.
life.9,202 It has been the primary treatment for SCC.173 Only All patients with hypercalcemia who are symptomatic warrant a
symptomatic sections of the spine are treated. Seventy percent trial of therapy.
of patients who are ambulatory at the start of treatment will Control of hypercalcemia will not affect prognosis but may greatly
retain their ability to walk. Thirty-ve percent of paraparetic improve symptoms and quality of life in these patients.
patients will regain their ability to walk, while only 5% of com-
pletely paraplegic patients will do so.16,203 Primary side effects of Denition
radiation therapy include skin alterations of erythema, dry or
moist desquamation, pigmentation changes, as well as general- Hypercalcemia is an excessive amount of ionized calcium in
ized fatigue. the blood.204,205 If hypercalcemia is left untreated, the patient
may experience irreversible renal damage, coma, or death.
Nursing Management Mortality from untreated hypercalcemia approaches 50%.
The goal of nursing management is to identify patients at high Epidemiology

risk for cord compression, to educate the patient and family
regarding signs and symptoms to report, to detect early signs of About 10% to 20% of cancer patients will develop hypercal-
SCC, and to work as a member of the palliative care team in cemia at some time during their illness.204,206208,210 Carcinomas
managing symptoms during management of SCC. In those of the breast and lung, multiple myeloma, and squamous cell
patients who have far advanced disease, palliative care efforts carcinomas of the head, neck, and esophagus are the most
focus on promoting comfort, relieving pain and family common malignancies associated with hypercalcemia. Inci-
support. dence ranges from 30% to 40% for breast cancer with bone
metastases, 20% to 40% for multiple myeloma, 12.5% to 35% The kidney normally adapts to disturbances in calcium
for the squamous cell lung carcinomas, and 2.9% to 25% for homeostasis. However, in the presence of malignancy, patients
head and neck malignancies.204 Hypercalcemia is rare in may experience treatment or disease-related side effects
prostate cancer, GI cancers, and cancers of the biliary tract.204 including vomiting, mucositis, anorexia, dysphagia, and fever,
Primary hyperparathyroidism as a cause of hypercalcemia is all of which can lead to volume depletion.204 This imbalance
more common in the ambulatory and asymptomatic popula- signals the kidney to reabsorb sodium to correct extracellular
tion.209,211,216 Other conditions associated with hypercalcemia volume depletion. Calcium and sodium resorption are closely
include lithium therapy, Addisons disease, Pagets disease, gran- linked in the body; when sodium is resorbed, calcium is also
ulomatous disease, vitamin D intoxication, hyperthyroidism, resorbed. As calcium ions are resorbed in the kidney, the
vitamin A intoxication, and aluminum intoxication.205,212 tubules lose their ability to concentrate urine, leading to high-
output polyuria and further dehydration. Poor renal perfu-
Pathophysiology sion, reduced glomerular ltration and compromised
excretion of calcium lead to a further increase of calcium in
Calcium helps the body to maintain its acid-base balance, the blood. Ultimately, renal failure will occur.
maintain permeability of cell membranes, promote coagula- A high calcium level can alter the patients mental status
tion, and maintain proper nerve and muscle function.213 signicantly, which, in turn, can greatly affect the patients
Under normal circumstances, bone resorption and bone for- ability to drink uids. Cellular dehydration and resulting
mation are in a steady state and are regulated by three hypotension are exacerbated by decreased proximal renal
hormonesparathyroid hormone (PTH), calcitriol (1,25 tubule reabsorption of sodium, magnesium, and potassium.
dihydroxyvitamin D, a metabolite of vitamin D), and calci- Bone loss due to immobilization, lack of physical exercise,
tonin.205 These hormones act at bone sites, in the intestine, and inappropriate use of thiazide diuretics, poor diet, and general
in the kidney. PTH directly increases resorption of calcium physiological wasting will also increase the amount of free cal-
from the bone and calcium resorption in the renal tubule. Cal- cium ions in the circulation, further increasing calcium levels.
citriol stimulates absorption of calcium in the intestine. It
enhances bone resorption and increases renal resorption. Cal- Diagnostic Tests and Procedures
citonin is excreted by the thyroid gland and inhibits bone
resorption and increases excretion of calcium. The ionized calcium concentration is the most important lab-
Bone undergoes constant remodeling in the human body. oratory test to use in the diagnostic workup for hypercalcemia.
Osteoblasts form bone and osteoclasts resorb bone. About It is the most accurate indicator of the level of calcium in the
99% of the bodys calcium is found in bone. The remaining 1% blood. (There is only a fair correlation between the total serum
circulates in the blood or is found inside cells. Half of plasma calcium level and ionized calcium.) When ionized calcium
calcium is bound to either protein (albumin) or to other ions, cannot be used as a diagnostic tool, the total serum calcium
such as phosphate, carbonate, or citrate. The remaining cal- value may be used, but it must be corrected for serum albu-
cium circulates as free ions. Since free calcium is biologically min. A rule of thumb is to add 0.8 for each 1 g/dL the albumin
active, its level is maintained in a narrow range in the normally has dropped below the normal range (3.7 to 5 g/dL).204,205
physiological state.
Hypercalcemia in malignant disease is primarily due to Signs and Symptoms
increased mobilization of calcium from bone. Increased renal
tubular calcium resorption is also a factor in hypercalcemia of Symptoms of hypercalcemia, their severity, and how quickly
malignancy. There are three major mechanisms that con- they appear will vary from patient to patient. The extent of
tribute to the development of malignant hypercalcemia.206 metastatic bone disease is not associated with hypercalcemia
First, higher levels of PTHrP (parathyroid hormone-related levels.208,209,210,214 It is important to remember that patients,
protein) are found in hypercalcemic patients who have solid especially the elderly and the debilitated,204,209,212,215 may expe-
tumors, particularly squamous cell carcinomas. The presence rience severe symptoms when serum calcium is not extremely
of elevated PTHrP levels is associated with more advanced elevated.204 Symptoms of hypercalcemia, such as vomiting,
cancer, a worse prognosis, and a poor response to bisphospho- nausea, anorexia, weakness, constipation, and impaired men-
nate therapy. Approximately 80% of cases of malignant hyper- tal status, may be mistakenly attributed to the disease or effects
calcemia are related to the presence of this protein. of treatment. Factors that will inuence patients response to
Second, osteolysis of bone is caused by the release of tumor hypercalcemia include age, performance status, renal or
and other cell mediators. When this mechanism is operating, hepatic failure, and sites of metastatic disease.
hypercalcemia occurs late in disease and is usually associated Patients with a corrected serum calcium level less than
with extensive osteolytic bone metastases. Third, the increased 12 mg/dL who are asymptomatic can be considered to have mild
production of calcitriol by lymphoma tumor cells, for example, hypercalcemia. Patients who have a serum calcium level between
leads to increased resorption of calcium in the gut. Hypercal- 12 and 14 mg/dL should be closely monitored and may require
cemia induced by calcitriol usually responds to corticosteroid urgent intervention, depending on goals of care in the palliative
therapy. setting. Those patients with a calcium level greater than 14 mg/dL
will require urgent treatment, again depending on goals of care into the bloodstream. Several IV bisphosphonates and amino-
in the palliative setting.206 bisphosphonates are available for use in patients.222,223 Pamidro-
The patient may complain of numerous symptoms that can nate and etidronate are available in the United States.208,217,224,225
mimic symptoms of advanced malignancy.204 These include GI Newer agents include risedronate sodium, ibandronate, and
symptoms of nausea, vomiting, anorexia, constipation, obsti- zoledronic acid.226
pation and even complete ileus. Polydipsia and polyuria may Pamidronate has been the most frequently used bisphos-
also be present. Muscle weakness, fatigue, and difculty climb- phonate. It is more potent and produces a longer response that
ing stairs or getting out of a car, are musculoskeletal symptoms often begins within 24 hours of IV administration and lasts for
that can progress to profound weakness, hypotonia, and frac- 15 days.211,217,225,227 Pamidronate appears to be safe in the usual
ture. Neuropsychological symptoms can begin with confusion, dose of 60 mg to 90 mg IV given approximately every 3 to 4
personality change, restlessness, and mood alterations and weeks. In general, there is a 60% response to a 60-mg dose and
progress to slurred speech, psychotic behavior, stupor, and a 100% response to a 90-mg dose.211
coma. These are also symptoms that must be evaluated. The Since hypercalcemia tends to recur, pamidronate must
patient may also complain of bone pain, although the precise be given approximately every 2 to 3 weeks. Side effects of
mechanism of bone-pain hypercalcemia is unknown. pamidronate therapy include low-grade fever appearing within
Early signs of delirium in the hypercalcemic patient are 48 hours of treatment, redness, induration, and swelling at the
associated with multiple factors that include electrolyte imbal- site of catheter. Hypomagnesia and hypocalcemia may also
ance, metabolic disturbance, and renal failure, among others. occur. Rapid administration of IV bisphosphonates can cause
If recognized early, treatment of the condition can alleviate signicant pain and this practice should be avoided. Subcuta-
and possibly reverse the symptoms.216 Management of confu- neous administration of clodronate has been found to be an
sion includes both pharmacotherapy and a reassuring and efcient treatment for malignant hypercalcemia.228 This route
calm environment. may be particularly useful in hospital, home, and hospice set-
tings and spares the patient discomfort and the costs associated
Medical and Nursing Management with transportation and IV administration in the hospital
environment.
Regardless of the goals of care, active treatment goals are to
promote alleviation of distressing symptoms. All patients with Calcitonin
hypercalcemia who are symptomatic warrant a trial of therapy.
When the goal is to reverse the hypercalcemia, this is accom- Calcitonin inhibits resorption of calcium and can rapidly
plished by replenishing depleted intravascular volume, pro- restore normocalcemia, often within 2 to 4 hours of adminis-
moting diuresis of calcium, shutting down osteoclast activity in tration. It is much less effective than pamidronate. Its role in
the bone, inhibiting renal tubular reabsorption of calcium, and managing hypercalcemia is limited to short-term use, usually
promoting patient mobilization to the extent it is possible.205,206 of only 2 to 3 days duration. Side effects are usually mild and
Hydration is the rst step in treatment. The purpose of include nausea and vomiting, skin rashes, and ushing.
hydration is to increase urinary calcium excretion, which
improves renal function.207 One to 2 liters of isotonic saline is Gallium Nitrate and Plicamycin
administered over 1 to 4 hours, and the patients uid intake
and urinary output are closely monitored. The rate of uid Gallium nitrate is an effective bone resorptive agent. Its mecha-
administration depends on the clinical estimate of the extent nism of action is unknown.229 Its main disadvantages are that it
of hydration, patient cardiovascular function, and renal excre- has potential to cause nephrotoxicity, and it must be given as a
tion capacity.206 continuous IV infusion over 5 days.205,217 Plicamycin is an anti-
Electrolytes and other laboratory values are closely moni- tumor antibiotic.230,231 Its mechanism is unknown. It has a
tored in appropriate patients. These include serum calcium hypocalcemic effect that occurs within 48 hours of administra-
(ionized or corrected), potassium, magnesium, as well as other tion and that lasts for 3 to 7 days, but it exhibits marrow, hepatic,
electrolytes, and albumin and bicarbonate levels. Renal func- and renal toxicities.205 Individual response variations make this
tion tests, including BUN and creatinine, are monitored. In drug unpredictable, and it must be administered repeatedly.
rare cases, dialysis may be considered. In most patients, cardiac
effects of hypercalcemia are minimal and outcomes are not Corticosteroids
usually affected, so cardiac monitoring is not usually necessary.
Corticosteroids have a limited role in the treatment of hyper-
Bisphosphonate Therapy calcemia.206
Most hypercalcemic patients are treated with bisphospho- Dialysis

nate therapy. It is an effective therapy for a number of
cancers.218-221 Bisphosphonate therapy inhibits bone resorption The use of dialysis has been reserved for those patients who
by osteoclasts, thus reducing the amount of calcium released have severe hypercalcemia, renal failure, congestive heart
failure, and cannot be given saline hydration.232,233 The deci- 6. Rowell NP, Gleeson FV. Steroids, radiotherapy, chemotherapy
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24o] Patti Knight, Laura A. Espinosa, and Eduardo Bruera
Sedation for Refractory Symptoms and

Terminal Weaning
You wouldnt let a dog suffer like this!Wife of terminal cancer patient with severe dyspnea from
obstructive terminal lung cancer before palliative sedation
I wish everyone could see all the tubes and the equipment that it took to sustain my husband in a
lifeless state of nonexistence, only then to die of cancer. He looked so peaceful after we removed all
the tubes and equipment that sustained him.Wife of dying patient in intensive care unit
Key Points In the United States, approximately 2.5 million people die each
Palliative sedation is sedation used to control refractory and year, with >60% of those deaths occurring in hospitals.1 These
unendurable symptoms at the end of life when control of these statistics are alarming and support the publics concern for the
symptoms is not possible with less aggressive measures. dying. The results of a survey by the Last Acts Coalition, funded
Determining refractoriness of symptoms and prognosis of hours to by the Robert Wood Johnson Foundation, suggested that the
days to live is difcult and requires assessment and management by public feels that deaths in hospital settings are not well man-
skilled practitioners with advanced palliative training. aged; 93% of respondents stated that it was very important
Patient/family/proxy involvement is critical in decision-making or somewhat important to improve how the health care sys-
concerning use of palliative sedation or terminal weaning. Clear tem cares for dying Americans.2 This survey also stated that
communication with signicant others, clear documentation of the patients and their family members clearly want to be involved
meeting, and informed consent are necessary. in decision-making (42%) and to be comfortable at the end of
Withholding or withdrawing life support has increased life, with well-managed symptoms (39%) and with care that
dramatically, from 51% of all intensive cae unit (IXU) deaths in does not exhaust their life savings (73%).
1987 to 90% in 1993.24,25 Palliative care providers are faced with the challenge of
Nursing professionals in the acute units and the ICU should train managing a multitude of complex symptoms in terminally ill
new nurses in the skills required to withdraw and withhold patients. Although many of these symptoms respond to skilled
treatment. These skills do not come easily; a concerted effort should palliative management, others may remain refractory to
be made to provide proper training to ensure patients a painless, treatment.37 Suffering at the end of life involves physical, psy-
dignied, peaceful death. chological, social, and spiritual distress. In most situations,
The principle of double effect holds that an act with more than one multidisciplinary palliative interventions provide effective
potential effect (at least one good and one bad) is ethical if certain comfort.6,7 However, in some instances, suffering becomes
conditions are met. For example, medications administered in the refractory and unbearable.8 Information about end-of-life
process of terminal weaning from a ventilator or palliative sedation decision-making is scarce and usually is obtained after the
for refractory dyspnea are intended to provide comfort rather than death by retrospective research methods. Therefore, decisions
hasten death. about starting or forgoing potentially life-prolonging or life-
shortening therapy are not well understood.9
Research and experience suggest that much work must be
done in palliative care in the areas of sedation and advanced
therapy decision-making, both before and at the end of life.
This chapter explores the use of palliative sedation and termi-
nal weaning in the hospital setting. Specically, it presents
case studies involving palliative sedation and withholding or
withdrawing life support, denitions of palliative sedation,
incidence of sedation use, reasons for sedation, sedative med-
ications, treatment locations, guidelines for use of sedation,
nursing care, ethical issues, informed consent, time to death,
and the role of the nurse caregiver.
467
The following cases provide examples of clinical situations rather than hastening death. Currently, most authors have
in which decision-making regarding sedation and terminal elected to use the term palliative sedation.6,7
weaning was required. At the authors institution, the term palliative sedation is
used. It is dened as the monitored use of medications (mida-
zolam or propofol) that induce sedation to control refractory
9=
and unendurable symptoms near the end of life when control
case study i
of these symptoms is not possible with less aggressive mea-
Mr. M, a 35-Year-Old Man with Metastatic Lung Cancer
sures. The purpose is to control symptoms, not to hasten death.
Mr. M, a 35-year-old Asian patient with widely metastatic The acceptance of the term palliative sedation over terminal
lung cancer, was transferred to the acute palliative inpatient sedation has evolved to emphasize the difference between man-
unit for management of severe delirium. His mother and agement of refractory symptoms and euthanasia. Table 241
his life partner, a nurse, accompanied the patient to the unit.
He was also under psychiatric care for bipolar disorder and
was taking six psychotropic mediations. Although Mr. M. had
uncontrolled large muscle movements, he was arousable and Table 241
could follow simple commands. Both his mother and his Palliative Sedation Denitions
signicant other were very distressed. This is a fairly typical
Euthanasia: the deliberate termination of life of a patient by
patient presentation to an acute palliative unit. Approxi- active intervention at the request of the patient in the setting
mately 25% to 35% of this type of delirium is reversible.10 of uncontrolled suffering (Cherny [2000], reference 63).
Existential suffering (sometimes referred to as terminal
9= anguish): refractory psychological symptoms (Lanuke et al.
case study ii [2003], reference 35).
Mr. Z, a 52-Year-Old Man with Mesothelioma Imminent death: death that is expected to occur within
hours to days based on the persons condition, disease
Mr. Z, a 52-year-old man was admitted to the intensive care progression, and symptom constellation.
unit (ICU) status post left pneumonectomy with mesothe-
Intent: the purpose or state of mind at the time of an action.
lioma in his remaining lung. He had been married for Intent of the patient/proxy and health care provider is a
30 years and had two adult children: a 23-year-old daughter critical issue in ethical decision-making regarding palliative
and 26-year-old son. He was awake and alert but ventilator sedation. Relief of suffering, not hastening or causing death,
dependent, with a tracheostomy, and in renal failure. Renal is the intent of palliative sedation.
dialysis was being discussed by the physicians. The patient Palliative sedation: the monitored use of medications
was surrounded by his wife, daughter, and family friends. intended to provide relief of refractory symptoms by
When the patient was informed that his lung cancer was inducing varying degrees of unconsciousness, but not death,
metastatic, he expressed his desire to go home and discon- in terminally ill patients (Hospice and Palliative Nurses
tinue mechanical ventilation. The patients request to discon- Association [2003], reference 55).
tinue mechanical ventilation was unrealistic but began the Double effect: in terminal sedation, an act with more than
dialogue for terminal weaning. one potential effect (one good and one bad) is ethical if
o] (1) the intended end (relief of distressing symptoms) is a
good one, (2) the bad effect (death) is foreseen but not
intended, (3) the bad effect is not the means of bringing
o] about the good effect (death is not what relieves the distress),
Denitions and (4) the good effect outweighs the bad effect (in a dying
patient, the risk of hastening death for the benet of comfort
is appropriate) (Thorns [2002], reference 84).
There is no standardized or consistent search term for pallia-
tive sedation across databases. The phrase terminal sedation Refractory symptom: a symptom that cannot be adequately
controlled in a tolerable time frame despite the aggressive use
was rst used by Enck,11 who employed the term after a review
of usual therapies and that seems unlikely to be adequately
of patient cases in which physical symptoms were treated with controlled by further invasive or noninvasive therapies
sedation at the end of life. Since that time, numerous efforts without excessive or intolerable acute or chronic side effects.
have been made to dene terminal sedation clearly and to sep-
Terminal weaning (slow withdrawal): removal of mechanical
arate it from sedation used in other medical settings.47,1214 ventilation, which is performed by gradually reducing the
Terminology for palliative sedation varies and includes pallia- fraction of inspired oxygen (Fio2) and/or mandatory
tive sedation,4,6,7,13 terminal sedation,8 total sedation,15 sedation ventilator rate, leading to the development of hypoxemia and
for intractable symptoms,16 and sedation for distress in the hypercarbia, when the patient is not expected to survive.18,20
imminently dying.4 Palliative sedation has also been termed Terminal extubation (abrupt withdrawal): removal of an
slow euthanasia,17 but terms such as this should not be used, endotracheal tube.19
because the intent of palliative sedation should be comfort
Sedation for Refractory Symptoms and Terminal Weaning 469
lists common terms used in relation to palliative sedation and advantage of terminal weaning, including administration of
terminal weaning. sedatives and analgesics, is that patients do not develop
The term terminal wean is used when mechanical ventila- any signs of upper airway obstruction during the withdrawal
tion is withdrawn and the patient is not expected to survive.18 In process. Terminal weaning can be viewed as less disruptive than
1983, Grenvik was the rst to describe a systematic approach to extubation, reducing the anxiety of family and caregivers. On
ventilator withdrawal, suggesting a gradual reduction in the ven- the other hand, it has been argued that the principal advantages
tilator setting over several hours.19 Many strong opinions exist of extubation are that the dying process is not prolonged and
regarding slow withdrawal versus abrupt withdrawal. A com- the patient is returned to a more natural appearance.25
monly used expression is terminal extubation,which is removal
of the endotracheal tube. This technique usually occurs after
administration of boluses of sedatives or analgesics, or both. o]
Another term used to describe this technique is terminal Reasons for Sedation
wean, which is performed by gradually reducing the fraction of
inspired oxygen (Fio2) and/or mandatory ventilator rate, which Although sedation has been used to control noxious symp-
may lead to the development of hypoxemia or hypercarbia or toms and for surgical anesthesia, its use at the end of life has
both.20 The decision to remove the endotracheal tube during or not been so generally accepted.13,17,2931 Common symptoms at
after a terminal weaning process is practitioner dependent at this the end of life include pain, dyspnea, delirium, and nausea and
time. Perhaps best practices could be decided by further research. vomiting, as well as hopelessness, remorse, anxiety, and loss of
meaning for the patient.4,5 Palliative sedation is most com-
monly used for physical symptoms that are not responding
o] to aggressive symptom management and are causing life to
Incidence of Use become unbearable. Table 242 outlines common symptoms
for which palliative sedation is used. Fainsinger and associ-
It is difcult to determine how often palliative sedation occurs ates,32 in a multicenter international study, found that 1% to
in practice. The exact frequency of palliative sedation is 4% of terminally ill patients needed sedation for pain, 0% to
unknown, but is reported to be used in 5% to 52% of dying 6% for nausea and vomiting, 0% to 13% for dyspnea, and 9%
patients. The wide variation results in part from inconsisten- to 23% for delirium. In a review of 27 reports, 342 patients had
cies in definition and reporting and from cultural differ- more than one symptom.13 Chaters survey of palliative care
ences.47,21 Because patients with refractory symptoms are often experts found that more than half of patients had more than
hospitalized, 81% of the reported cases of palliative sedation one symptom and that 34% received sedation for nonphysical
occur in inpatient settings such as a hospital or hospice.13 symptoms such as anguish, fear, panic, anxiety, terror, and
Approximately half of those who die in a hospital have been emotional, spiritual or psychological distress.8
cared for in an ICU within the previous 3 days, and one third of The concept of refractoriness of nonphysical symptoms or
them spend at least 10 days in the ICU during their nal hospi- existential suffering is not as clear.7,8,32,33 Although there is no
talization.22 In 1995, 20% of all deaths in the United States clear consensus on palliative sedation for existential suffering,
occurred in an ICU.20,22 Many studies in the United States have the Oregon experience with physician-assisted suicide indicates
shown that the majority of ICU deaths involve withholding or that patients want assisted suicide to avoid dependence on
withdrawing life-sustaining treatments.23 Withholding or with- others and to control the timing and manner of their death.34
drawing life support has increased dramatically, from 51% of all Psychological suffering is a more nebulous symptom for seda-
ICU deaths in 1987 to 90% in 1993.24,25 tion, but it can be just as distressful and refractory as physical
A 1997 survey of the Critical Care section of the American
Thoracic Society revealed that 96% of the physician respon-
Table 242
dents had withheld or withdrawn some form of life support.26
Symptoms Requiring Palliative Sedation
A survey by Luce and Pendergast demonstrated wide geo-
graphical variation in the proportion of deaths in ICUs that are Symptom Frequency (%)
preceded by withdrawal of life support (0% to 79%) and the
Agitation/restlessness 26
proportion that are preceded by a do-not-resuscitate (DNR)
order (0% to 83%).27 Other studies have shown that 70% to Pain 21
90% of ICU patients who die do so as a consequence of a deci- Confusion 14
sion to withhold or withdraw life support.25 Shortness of breath 12
In a 1992 survey of Society of Critical Care Medicine physi- Muscle twitching 11
cians about general ICU patients in need of extubation, 33% Anguish 9
preferred terminal weaning, 13% preferred extubation, and the
Other 7
remainder used both.28 Surgeons and anesthesiologists were
more likely to use terminal weaning, and internists and pedia- Source: Cowen and Palmer (2002), reference 6.
tricians were more likely to use extubation. The primary
Table 243
Refractory Physical Symptoms
Symptom Considerations Before Dening a Symptom As Refractory
Agitation and confusion Discontinue all nonessential medications

Change required medications to ones less likely to cause
delirium
Check for bladder distention and rectal impaction
Evaluate for undiagnosed or undertreated pain
Review role of hydration therapy
Consider evaluation and therapy for potentially reversible
processes, such as hypoxia, hyponatremia, and
hypercalcemia
Pain Maximize opioid, nonopioid, and adjuvant analgesics
including agent, route, and schedule
Consider other therapies, including invasive/neurosurgical
procedures, environmental changes, wound care, physical
therapy, and psychotherapy
Anticipate and aggressively manage analgesic side
effects
Shortness of breath Provide oxygen therapy
Maximize opioid and anxiolytic therapy
Review the role of temporizing therapy, including
thoracentesis, stents, and respiratory therapy
Muscle twitching Differentiate from seizure activity
Remember the use of opioid rotation, clonidine, and
benzodiazepines if muscle twitching is caused by high-
dose opioids
Source: Cowen and Palmer (2002), reference 6.
suffering.34,35 Table 243 identies interventions that should be drug and route chosen vary based on the route available, loca-
made before dening a physical symptom as refractory. tion of the patient, and cost, as well as the preference of the
In the ICU setting, reasons for terminal sedation are related provider.6 Usually in inpatient settings the medications are
to both refractory symptom management and terminal wean- given intravenously or subcutaneously and continuously. In
ing from a ventilator. The decision for terminal weaning may palliative sedation, in general, the chosen medication is started
occur if the patients condition is terminal, attempts to wean at a low dose and titrated upward until the symptom is con-
from the ventilator have failed, and the family or patient controlled. Before palliative sedation is started, administration of
curs with futility.Futility is dened as the perception that the all previous comfort medications should be continued.7 Types
patient has a poor prognosis and is not likely to survive.25 and routes are presented in Table 244. The type of medication
Singer and colleagues36 described ve domains that indicate used may be inuenced by state regulatory agencies for nurs-
good end-of-life care: good symptom management, avoiding ing, medicine, and pharmacy. For example, the Texas Board of
inappropriate prolongation of the dying process, achieving Nurse Examiners expresses concern regarding the administra-
a sense of control, relieving burden, and strengthening the tion of anesthetics by nurses not certied as nurse anesthetists
patients relationship with loved ones. in nonmonitored settings.
The drugs of choice for refractory symptoms and terminal
weaning in the ICU are opiates and benzodiazepines.18,20,38,39
o] These drugs can be continually infused and titrated until the
Medications patient appears comfortable. Morphine is a drug of choice
because it provides analgesia, sedation, and reduction of dysp-
Drugs used in palliative sedation outside the ICU are benzodi- nea.18 In some instances, barbiturates, haloperidol, and propo-
azepines, neuroleptics, barbiturates, and anesthetics.6,7,13,16 fol are used.40,41 Neuromuscular blocking agents have no
Midazolam is the most commonly used of these drugs.6,37 The therapeutic effect; they should not be started, or should be
Table 244
Medications Used for Palliative Sedation
Medication Dose and route Comments
Benzodiazepines/midazolam Loading dose of 0.55.0 mg, Monitor for paradoxical

followed by 0.510 mg/h agitation with all
continuously infused IV benzodiazepines
or SQ
Lorazepam 0.55.0 mg every
12 h PO, SL,
or IV
Neuroleptics/haloperidol Loading dose of 0.55.0 mg Monitor for
PO, SL, SC, or IV, followed extrapyramidal
by an IV bolus of 15 mg side effects
every 4 h or 15 mg/h
continuously infused IV or SQ
Chlorpromazine 12.525.0 mg every 24 h More sedating than
PO, PR, or IV haloperidol
Barbiturates/pentobarbital 60200 mg PR every 48 h; Do not mix with
loading dose of 23 mg/kg other drugs when given IV
bolus IV, followed by
12 mg/kg/h
continuously infused IV
Phenobarbital Loading dose of 200 mg,
followed by 0.5 mg/kg/h
continuously injected
SQ or IV
Anesthetics/ Begin with 2.55.0 g/kg/
propofol min and titrate to desired effect
every 10 min by increments
of 1020 mg/h
IV, intravenously; SQ, subcutaneously; PO, per os; SL, sublingually, PR, per rectum.
Source: Lynch (2003), reference 7.
stopped if already prescribed, before life-sustaining therapies ties do not have access to these specialists. Because palliative
are withdrawn.38,42 Neuromuscular blockades make it difcult sedation should be a last resort for intractable symptoms,
to assess a patients comfort level because their use makes expertise in symptom management and end-of-life care to
movement impossible. Patients may be experiencing pain, res- verify refractoriness is needed.6,45 The drugs of choice are clas-
piratory distress, and anxiety but unable to communicate their sied as anesthesia medications, but institutional polices may
symptoms.43 limit the choice of agents used. Unfortunately, inappropriate
If the skilled clinician is available and the patients family use of benzodiazepines for palliative sedation occurs, and
agrees, the withdrawal of life support can ethically occur in the sedation may be implemented by professionals not trained in
presence of neuromuscular blockade.42,44 This is useful in cases palliative care.
in which death is expected to be rapid and certain after Unfortunately, palliative sedation seems at cross-purposes
removal of the ventilator and if the burden to the patient and with the goals of intensive care. The original intent of admis-
family of waiting for the neuromuscular blockade to clear the sion to an ICU is to aggressively stabilize the patient faced with
system (up to several days), is inappropriate. life-threatening events. The ICU environment allows rapid
identication and treatment of life-threatening changes to
avoid death.46 Patients and families come to the ICU expecting
o] miracles, and they often are familiar with stories of those who
Treatment Locations have survived similar experiences, whether real cases or from
television. The challenge for health care practitioners in the
Many hospitals do not have palliative care units. Although the ICU is to know when to transition from curative to palliative
number of fellowship programs for Palliative Medicine in the care and then to communicate with the family regarding
United States has grown to 20,39 most hospitals and communi- the patients prognosis and decisions about sedation. Once
Table 245
Palliative Sedation Checklist
Part A. Background
Conrm patient has
Irreversible advanced disease.
Apparent imminent death within hours, days, or weeks.
A do not attempt resuscitation order.
Conrm that symptoms are refractory to other therapies that are acceptable to the patient
and have a reasonable/practical potential to achieve comfort goals.
Consider obtaining a peer consultation to conrm that the patient is near death with
refractory symptoms.
Complete informed consent process for palliative sedation (PS).
Discontinue interventions not focused on comfort.
Discontinue routine laboratory and imaging studies.
Review medications, limit to those for comfort, and adjust for ease of administration
(timing and route).
Discontinue unnecessary cardiopulmonary and vital sign monitoring.
Review the role of cardiac support devices (e.g., pacemaker) and disable functioning
implanted debrillators.
Integrate a plan to discontinue ventilator support with PS.
Develop a plan for the use or withdrawal of nutrition and hydration during PS.
Identify a location and an environment acceptable for providing PS.
Use providers familiar with PS and the use of sedatives.
Part B. Treatment/Care of the Patient
Institute and maintain aspiration precautions.
Provide mouth care and eye protection.
Use oxygen only for comfort, not to maintain a specic blood oxygen saturation.
Provide medications primarily by IV or SQ route.
Maintain bowel, bladder, and pressure point care.
Continue, do not taper, routine opioids.
Provide sedating medication:
Around the clock.
Titrate to symptom control not level of consciousness, using frequent
re-evaluation.
Limit vital sign monitoring to temperature and respiratory rate for
dyspnea.
Choose sedating medication based on provider experience, route available, and patient
location.
Home initial dosing (choose one):
Chlorpromazine, 25 mg suppository or 12.5 mg IV infusion every 46 h.
Midazolam, 0.4 mg/h by continuous IV or SQ infusion.
Lorazepam, 0.52.0 mg IV sublingually every 46 h.
Hospital initial dosing (choose one):
Chlorpromazine, 12.525.0 mg every 46 h.
Midazolam, 0.4 mg/h by continuous IV or SQ infusion.
Amobarbital or thiopental, 20 mg/h by continuous IV infusion.
Propofol, 2.5 mg/kg/min by continuous IV infusion.
Source: Lynch, (2003), reference 7.

there is a consensus, the challenge is then to transform the vital to developing a relationship of trust and avoiding conict
high-tech, fast-paced, often loud ICU setting into a peaceful, during any illness, but it becomes more important at the end
serene environment conducive for dying. Even in ideal settings, of life. The team has to build a trusting relationship with
where palliative care and ICUs coexist, there are still challenges patients and families as they make difcult decisions. If a
in transferring patients to a less restrictive environment in a patient or family members do not trust the health care team,
safe, timely manner due to the patients critical, fragile state. conict is likely to result.49 Communication includes (1) being
Copies of protocols from the authors institution are include in honest and truthful, (2) letting patients and families know
Appendices 24-1 through 24-3 at the end of this chapter. they will not be abandoned, (3) including them in care deci-
sions, (4) helping the patients and families explore all options,
(5) asking clearly what they need from the team, (6) working
o] to ensure that the entire team knows and understands the
Guidelines for Use plan, and (7) most important, active listening.48,50
When the decision is made to use either terminal sedation
The use of sedation for refractory symptoms varies. Therefore, or terminal weaning, caring and thoughtful communication
the use of clinical pathways or checklists is recommended to make a tremendous difference in the familys experience with
ensure optimal and consistent standards of care.6,21 Table 245 the death. The concept of presence with the patient and fam-
is a sample checklist for palliative sedation. Table 246 is a sam- ily during the death vigil is difcult to quantify but critical
ple checklist used in an ICU setting for terminal weaning. during periods of extreme distress.5153 Untreated symptoms
Although evidence is often anecdotal, there has been concern cause families and staff to be traumatized by a horrible
that palliative sedation could be used inappropriately.6,21,45 Four death. For example, 77% to 85% of all cancer patients experi-
factors need to be present for a patient to be considered for ence delirium before death.54 Some delirium, 25% to 35%, is
sedation. First, the patient should have a terminal diagnosis. reversible,10 and all patients should be treated for delirium
Second, the patient should have symptoms that are unbearable and other distressing symptoms. Loss of inhibition is the
and refractory. Consultation with an expert to conrm that the hallmark of delirium as global brain function diminishes.
patient is near death with refractory symptoms is recom- Symptoms of moaning, groaning, and restlessness are often
mended. Third, a DNR order must be in effect. Fourth, death interpreted by the family as physical pain. An explanation of
must be imminent (within hours to days), although this can be the delirium and aggressive treatment is important to com-
challenging to determine.6,7,45 In the presence of the rst three fort the family, who also need support for anxiety, grief, and
conditions, sedation may be appropriate for a patient with sadness as they prepare for the death of their loved one. They
severe distress that has been unresponsive to skilled palliative need continual explanations of and reassurance about what
interventions. Ethics committees or patient advocate services to expect and the opportunity to express their feelings of
may be useful if there appear to be irresolvable family or staff grief.6
conicts. Studies have shown that ethics consultations are use-
ful in resolving conicts that may otherwise prolong futile and Physical Care
unwanted treatments in the ICU.47
A major function for palliative care is to assist families to Nurses play an essential role at the bedside to administer seda-
make the transition in goals of treatment from cure to comfort. tion and monitor symptom response to sedation. It is also
Refractory symptoms and the distress they cause create a very important to continually reinforce with the family that the
difcult and abrupt need for this transition phase. Use of the intent of sedation is symptom control and not hastening of
interdisciplinary team to both plan for treatment options and death.6 In collaboration with the physician, evaluation of symp-
participate in family meetings is critical to the success of the tom response and possible need for titration of medication
team. The social worker plays a vital role in assessing caregiver should be done at least every 24 hours once the symptoms are
stress and family dynamics and coordinating family meetings. stable.
The chaplain and other psychosocial professionals provide spir- As the patient becomes more sedated, protective reflexes
itual assistance and counseling in redening hope and support- decrease. The ability to clear secretions decreases, necessitat-
ing the decision-makers through anticipatory and actual grief. ing suctioning and/or medications. Make sure the family
understands that the patient can no longer safely swallow.
The blink reflex decreases and eyes can become very dry,
o] requiring frequent eye drops (artificial tears). Bowel and
Nursing Care: Back to Basics bladder management needs to be carefully monitored to
maintain comfort. A urinary catheter is often appropriate to
Communication minimize the need for frequent changing and cleaning
and to prevent skin breakdown. General nursing care for
An important role of the nurse in the end-of-life process is immobilized patients is vital; mattress pads that decrease
to facilitate communication and establish trust between the pressure, excellent skin care, and attention to positioning are
patient, family, and health care providers.48 Communication is all important.50,55
Table 246
Checklist for Intensive Care Unit Personnel End-of-Life Criterion Checklist
Assessment MET NOT MET
1. Determine that primary physician, critical care

physician, family and possibly patient are in
agreement with discontinuation of life
sustaining treatment.
2. Assist family in preparation or fulllment of
familial or religious predeath rituals.
3. Place, do not resuscitate orders on chart.
4. Turn off neuromuscular blockade agents
(e.g., paralytics).
5. Provide a calm, quiet, restful atmosphere free of
medical devices and technology for the patient and
family, including dimming the lights in the room.
6. Turn off arrhythmia detection and turn off or
decrease all auditory alarms at bedside and central
station.
7. Remove all monitoring equipment from patient
and patients room except for the electrocardiograph
(ECG).
8. Remove all devices unless the removal of the device
would create discomfort for the patient (e.g.,
sequential compression device, nasogastric tube).
9. Remove or discontinue treatments that do not
provide comfort to the patient.
10. Obtain orders to discontinue test and laboratory
studies.
11. Liberalize visitation.
12. Notify respiratory therapist of end-of-life care.
13. Notify chaplain and social worker of end-of-life care;
obtain grief packet from chaplain.
14. Determine that family participants in the end-of-life
process are present, if appropriate; place sufcient chairs
in the patients room for family members.
15. Maintain the patients personal comfort and dignity
with attention to hygiene, hairstyle, and providing
moisturizers for lips and eyes.
16. Gather ordered sedation and analgesics. Frequent
assessment of the patients condition assists in titrating
medications per end-of-life protocol and level of
patient discomfort.
17. Document the patients signs and symptoms that
indicate discomfort, including but not limited
to the following:
Agitated behavior Grimacing
Altered cognition Increased work of
Anxiety breathing
Autonomic hyperactivity Irritation
Confusion Moaning
Coughing Pain
Dyspnea Perspiration
(continued )
Table 246
Checklist for Intensive Care Unit Personnel End-of-Life Criterion Checklist (continued )
Restlessness Tachypnea
Self-report of symptoms Tension
Splinting Trembling
Stiffness
Tachycardia
18. Remain at bedside to
a. assess patient for comfort/discomfort.
b. promptly administer sedation, analgesics.
c. provide emotional support to patient and family.
d. ask patient/family if additional comfort measures
are needed.
19. Obtain physician orders for additional or alterations
in pain and sedation medications if the end-of-life
protocol medications are ineffective in controlling the
patients discomfort.
20. Respiratory therapist should remain in room until
ventilator is function at minimal capacity or patient is
extubated and the ventilator is removed from the room.
21. Support and educate the patients family regarding
interpretation of the clinical signs and symptoms the
patient may experience during the end of life.
22. Assess the familys need to be alone with the
patient during and after the death process.
23. Assess the family to determine the amount of support
they require during the end-of-life process.
24. Assist the family in meeting its needs and the patients
needs for communication, nal expressions of love and
concern (e.g., holding a hand, talking with the patient,
remembering past events).
25. Discuss signs of death and how the physician will
pronounce the patient; the family will be asked to
leave the room while the physician examines the patient.
26. If the patient is transferred to the general care oors
during end-of-life care, provide the accepting nurse a
verbal report and discuss the dosage of IV medications
and the signs and symptoms for medication titration.
Suggest to the critical care physician or attending
physician a patient referral to or consultation with
palliative care services.
27. Notify intensive care unit physician to pronounce
patient. An ECG strip of a straight line or asystole is
not needed to document patient death.
28. Notify primary care physician.
29. Assist family with decisions regarding need for autopsy.
30. Notify clinical nurse specialist Monday through Friday
before 3 p.m. to complete death paperwork.
31. Notify in-house administrator after 3 p.m. and on
weekends to complete death paperwork.
(continued )
Table 246
Checklist for Intensive Care Unit Personnel End-of-Life Criterion Checklist (continued )
32. Notify chaplain, if chaplain not present.

33. If the patient is to have an autopsy, leave all tubes in
place; if no autopsy, remove all tubes (IV lines may be
clamped instead of removed).
34. Permit family visitation after the patient has been
cleaned and tubes removed.
35. Prepare patient for the morgue, shroud etc.
MET, Indicates that the individual is prepared, follows suggested steps in appropriate sequence, and demonstrates
minimal safe practice; NOT MET, Indicates that the individual is unprepared, needs repeated assistance or suggestions
in order to proceed, and or omits necessary steps.
Source: M.D. Anderson Cancer Center, Houston, Texas. Reprinted with permission.
Special Considerations in the Intensive Care Unit Time to Death
Immediately before terminal weaning, the physician should One of the concerns many have with palliative sedation is that
briey review the procedure and be available to answer any it might hasten death. Part of this concern stems from the dif-
questions family members may have. Nurses should ask family culty in predicting the time of death.57,58 Several studies using
members whether they have any last-minute questions or con- different methodologies have examined effects of sedation on
cerns. Nurses can reassure the family that comfort is the survival rates.13,29 The mean time to death in a large four-
primary goal and that pain medication is available. If appro- country study ranged from 1.9 to 3.2 days,32 and the median time
priate, nurses should also explain that the patient may need to to death in a Taiwanese study was 5 days.58a A study of patients in
be asleep to be comfortable. Nurses should also make clear Japanese hospices indicated that sedating medications did not
that sometimes the patient may experience involuntary move- shorten the lifespan.59 However, because of ethical considera-
ments but that they do not indicate pain. tions, none of these studies were controlled trials, so it is not
Before beginning the weaning process, the nurse should possible to determine whether sedation may or may not result
turn off the physiological monitoring alarms and remove any in hastening the death. In situations of unbearable distress,
unnecessary tubes or equipment (e.g., restraints, nasogastric sedation remains an appropriate option to relieve suffering.
tubes). Any unnecessary medications (e.g., vasoactive drips,
antibiotics) should be stopped. Before extubation, medica- Ethical Considerations
tions should be administered to establish adequate symptom
control as ordered by the physician. Opioids are the most This section describes ethical principles applicable to palliative
effective agents for relieving the sense of breathlessness, and sedation, which includes slow euthanasia and terminal
benzodiazepines are most effective for relieving anxiety. Any weaning. The ethical and legal principles that apply to pallia-
additional medications should be readily available. Oxygen tive sedation are patient autonomy (patients choice), benef-
should be set at 21% or as ordered by the physician. icence (do good), nonmaleficence (do no harm), futility, and
The need for additional medications should be continually the principle of double effect.6,16,29,60,61 Patient autonomy
assessed and readjusted. Once the patient appears to be com- is defined as freedom to make and act on decisions.6 This
fortable, the physician or respiratory therapist removes the requires informed consent with adequate decision-making
endotracheal tube. Throughout this process the nurse should capacity. Conicts can occur if patient, family, and staff beliefs
allow space for the patients family at the bedside. The decision about the goal of therapy are in conict. Autonomy conicts
to stay at the bedside or not is a personal decision and nurses with benecence and nonmalecence if the roles of the med-
can validate and support whatever decision is made by the ical and nursing caregivers as healers conict. The issue of
family. The family also should be encouraged to assist by wip- medical futility creates great distress for the physician who is
ing the patients forehead, holding the patients hand, or talk- accountable for medical care of a patient or family requesting
ing to the patient.56 The patient and family should be offered further treatment that is deemed by the medical team to be
chaplaincy or other psychosocial services support throughout futile. Refusal to treat does not mean ignoring patient or
the process. After the patient dies, the family should be allowed family wishes but reects a concern about doing harm instead
adequate time to begin the grieving process. of good.
This issue becomes more complicated for nurses at the issue of palliative sedation for existential suffering remains
bedside. Nurses are required to care for the patient based on controversial.4
the physicians orders with varying ability to express personal In Case Study I, cited earlier, before the transfer to the pal-
beliefs.53 With skilled palliative management, nurses are included liative unit, the primary physician felt uncomfortable with the
in the entire process. Resolution of dilemmas is difcult but is high level of sedation required for this young and otherwise
facilitated by ensuring that the nurse understands the goals healthy man to stay sedated. This physician did not object to
and is allowed the option to decline assignment to a patient the patients being sedated, but she was concerned with the
if uncomfortable with the treatment plan. Nursing leaders amount of medication required to appropriately sedate him.
across the country are working diligently to create systems that The physician initially refused to transfer the patient to the
support patients and their families as well as the nurses at the palliative service or to accept the palliatives team orders for
bedside during end-of-life care. sedation. Although the primary physician never used the term
The principle of double effect holds that an act with more slow euthanasia, her actions suggested this concern. The
than one potential effect is ethical if certain conditions are nurses on this medical oncology oor were concerned about
met. The doctrine of double effect emphasizes four basic con- killing the patient with medicine but also expressed concern
ditions: (1) the nature of the act is morally good and is not in a that the patient might die of suffocation while awake. The pal-
category that is absolutely prohibited or intrinsically wrong; liative physician requested a medical ethics consultation, but it
(2) the intent of the act is good, even in the presence of a fore- was not needed because the patient was transferred to the pal-
seen bad effect; (3) the means of attaining the good effect liative care unit.
(relief of suffering) is not bad; (4) the intended good effects The ethical principles that apply to withdrawal of mechan-
balance or are greater than the bad effects (rule of proportion- ical ventilation are patient autonomy, nonmalecence, and
ality).61 Cowan and Palmer6 added a fth condition: that there benecence. Patient autonomy is the process that allows the
are no other means to achieve the intended good effect. How- patient to make an informed and voluntary decision regarding
ever, Quill and coworkers62 argued that clinical justification his or her care. The basis for the ethical dilemma in withhold-
of palliative sedation is ambiguous, making double effect ing or withdrawing life support is the balance between patient
inappropriate, because palliative sedation causes death and the autonomy and physician autonomy or professional and insti-
intentions are not always clear. Cherny63 suggested that reliev- tutional integrity.71 A conict may arise if the patient or family
ing a symptom and proportionality are more appropriate than insist that everything be done and the health care team believes
double effect. that continued aggressive support would be inappropriate or
Some authors have suggested that palliative sedation and futile. In Case Study II, the family could have argued that the
slow euthanasia are morally equivalent.17,64 Billings and Block17 patient was not in a condition to make end-of-life decisions
dened slow euthanasia as the clinical practice of treating a and insisted that everything be done or, at the very least, that
terminally ill patient in a fashion that will assuredly lead to a mechanical ventilation be continued. The patient or family
comfortable death, but not too quickly. Mount65 argued that also could have requested further treatment (e.g., chemother-
Billings and Blocks denition is more a denition of palliative apy, dialysis).
care. Whereas euthanasia is the deliberate termination of life Withdrawal of life-sustaining therapy may be justied if
by active intervention of a medical provider for a patient with the therapy in question is deemed futile. Medical futility refers
uncontrolled suffering, palliative sedation is not euthanasia to interventions that are unlikely to produce a signicant ben-
because it is not intended to end life primarily but rather to et. Practitioners should carefully consider each intervention
relieve the distressing symptoms. and whether there would be benet or harm for the patient.
The U.S. Supreme Court in 1997 ruled unanimously that Terminal weaning can be disturbing for those who do not
there is no constitutional right to physician-assisted suicide understand the principles that guide caregivers actions. The
but terminal sedation is intended for symptom relief and not administration of opioids in this setting is justied ethically by
assisted suicide . . . .and is appropriate in the aggressive prac- the principle of double effect. The double effect principle
tice of palliative care.66,67 The American Nurses Association draws a distinction between the intended effects of a persons
(ANA) and the Oncology Nursing Society (ONS) have posi- action and the unintended, though anticipated, effects of that
tion papers opposed to physician-assisted suicide.68,69 Although action.40 During the terminal weaning process, the caregivers
neither addresses the exact issue of palliative sedation or ter- rst responsibility is to relieve pain and suffering, whereas the
minal weaning, both support the risk of hastening death potential for hastening death is tolerated as a necessary evil.
through treatments aimed at alleviating suffering or control- The clinicans primary intent is to relieve the patients suffer-
ling symptoms as ethically and legally acceptable. The Hospice ing and not to cause death.40 The terminal weaning process
and Palliative Nurses Association has issued a position paper can be more difcult for the caregiver if the patient is awake
in support of palliative sedation.55 Hospitals are being encour- and alert enough to participate in the decision to withdraw life
aged to develop policies for terminal sedation and against support, but the guiding principles remain the same.
euthanasia and to understand that aggressive and readily In Case Study II, another ethical principle that should be
available palliative care (included sedation) might actually considered is nonmalecence, or duty not to inict harm. The
reduce the demand for euthanasia or assisted suicide.70 The patients nurse might have viewed the withdrawal of ventilation
and corresponding sedation requirements as inicting harm. family meeting or the next day in nonemergency cases, an
In the case presented, does the patients physician have the informed consent document needs to be signed by the patient,
right to withhold dialysis? Medical futility refers to interven- family, or medical proxy. The family should be provided time
tions that are unlikely to produce a signicant benet to the to raise all concerns and clarify information.
patient. Practitioners should carefully consider each interven- Next, the treatment options should be discussed. When dis-
tion and whether there would be any benet for the patient. In cussing terminal sedation options, it is important to assess the
the case presented, continuing ventilation would only prolong patients and familys cultural and religious beliefs and con-
death. There is no reasonable likelihood that the patient could cerns. Documentation of the informed consent should include
ever have been weaned off the ventilator, because his cancer the patients name and diagnosis, the parties present, the rea-
had spread to his remaining lung. Use of life-sustaining or son for sedation (symptom distress), and the primary goal
invasive interventions in a patient who is terminally ill may (patient comfort), as well as patient terminal status, notation
only prolong the dying process.38 Also, the intervention of of any professional consultations, documentation that the
dialysis for the patient would only have prolonged the dying patient is near death and has refractory symptoms, planned
process. discontinuance of treatments not focused on comfort, plan for
Ethical issues are not clearcut. Although respect for patient hydration and nutrition, and anticipated risks or burdens of
autonomy is important, it does not mean that health care sedation.6 Because it usually is not possible to communicate
workers are obligated to provide requested sedation in all cir- with the sedated patient, it is important to make sure that the
cumstances. Principles of intent provide safeguards for pallia- patient and family are ready to proceed with sedation.73 A
tive sedation and terminal weaning. Closeness to imminent well-planned family meeting decreases miscommunication
death needs to be assessed, as well as refractoriness of distress- and supports the family during a difcult decision-making
ing symptoms. With careful application of criteria, palliative time by allowing all pertinent parties to hear the same infor-
sedation cannot be equated with slow euthanasia.16,31,59 mation at the same time.
In the ICU setting, there should also be a succinct descrip-
tion of the terminal weaning process. One of the most com-
o] mon reasons for withholding or withdrawing life support is the
Informed Consent perception that the patient has a poor prognosis.74 Although
there are many published guidelines for withholding and with-
Palliative sedation is a joint decision and not an arbitrary drawing life support, the actual implementation of such mea-
medical decision. In the palliative care setting, a consent for sures is often difcult for the health care team members as well
sedation should be obtained as soon as a symptom is identied as the patient and family. Physicians may have a difcult time
as possibly refractory. Sedation can then be quickly arranged if discussing such interventions with patients and families, and
needed. Informed consent regarding palliative sedation or ter- this often leads to the continuation of treatments that are med-
minal weaning should be more than simply a signature on a ically inappropriate or futile. The patient and family members
form. There is a tendency to discuss the plan of care for the should also be allowed sufcient time to reach a consensus
patient at the convenience of the physician and not that of the about whether to discontinue life support. All members of the
patient or family. A well planned, compassionate, and clear multidisciplinary team should understand and be able to dis-
discussion at the end of life should occur with the family and cuss the plan of care. The nurse and physician should also care-
the patient. The bedside nurse should attend these meetings to fully document the plan. Because withholding and withdrawing
provide insight into the care and support needed by the fam- life support and administering palliative sedation can involve
ily. It is vital to plan these meetings carefully to ensure that the health care practitioners other than the attending physician,
appropriate family members are present. Allowing the desig- the health care team should participate in the planning phase.75
nated decision-maker to invite important people to the planned A team approach is vital during this phase of care delivery,
meeting allows key participants to hear the information at the because disagreement among professional caregivers about the
same time. A religious or spiritual representative may be help- goal of care can increase liability.76
ful at these meetings if desired. Withholding and withdrawing life support are legally justi-
Family meetings work well for cohesive and connected ed primarily by the principles of informed consent and
family units. In families with more disparity, family members informed refusal.75 These principles were applied in the Karen
may appear to agree in the group but individually continue to Ann Quinlan and Nancy Cruzan cases. In the Quinlan case,
have conicts about agreed-upon decisions. Nurses and staff the New Jersey Supreme Court upheld a patients right to
need to respond to all questions and be prepared to repeat refuse medical treatment.77 The patient Quinlan was in a per-
information and provide support.72 sistent vegetative state, and her parents, acting as her surrogate,
The primary physician should begin the family meeting were granted the right to refuse mechanical ventilation. In the
with a brief, clear report on the current condition of the Cruzan case, the Missouri Court held that sufficient evidence
patient. Any supporting documentation of the current condi- of the patients wishes had been offered and made the ruling to
tion, such as recent laboratory data or other diagnostic test permit tube withdrawal.78 These cases were milestones because
results, may be helpful in certain cases. Either at the end of the they allowed the families, not the physicians, to determine
which treatments were appropriate and which were futile. The o]

Patient Self-Determination Act of 1990 further opposed the Case Study Conclusions
culture against the traditional medical paternalism and fos-
tered patients rights.78
9=
case study i
Mr. MConclusion
o]
The Nurse Caregiver After 5 days of aggressive attempts to reverse the delirium, a
family meeting was held with all signicant people present.
In most settings, the nursing staff is involved in the terminal The decision was made to provide palliative sedation for a
sedation or weaning process. Nurses must be provided with trial of psychotropic drug discontinuation with the hope that
the proper educational training to rectify knowledge and skill the hyperactive delirium might reverse. The mother and sig-
decits and to provide nurses the opportunity to seek alterna- nicant other understood that sedation could be terminal but
tive employment in another setting if they do not feel com- clearly agreed that Mr. Ms distress was unbearable. The fam-
fortable with palliative sedation or the terminal weaning ily opted for continued hydration, no parenteral nutrition,
process.79,80 Nurses involved in caring for these patients should chaplain and counseling support, and a course of midazolam.
be allowed to abstain from doing so until they feel comfortable Attempts to decrease the midazolam dose 2 days later resulted
with the process. in renewed agitation, so the dose was returned to mainte-
It may also be helpful for the nurse to have education and nance level and the patient died the next day with his loved
support regarding personal death awareness. Personal death ones at his side. The family was referred to bereavement ser-
awareness is dened as ones comfort with death and can be vices in the state where they live.
affected by personality, cultural, social, and spiritual belief sys-
tems. The nurse must be allowed to adapt to caring for dying
9=
patients, which may require the nurse to explore, experience,
case study ii
and express his or her feelings regarding death. If the nurse is
Mr. ZConclusion
not allowed to explore his or her personal beliefs, this may
result in inappropriate defense mechanisms, such as emo- The ethics team reviewed the case to determine the patients
tional distancing or avoidance and withdrawal from dying capacity and understanding of terminal weaning. The nurse
patients and families. was also concerned that withdrawing life support from this
Cumulative loss is experienced by nurses working with awake, alert patient would appear Kevorkian-like or give
patients with life-threatening illnesses. Cumulative loss can be the impression of euthanasia. The ethics team believed that
described as a succession of losses experienced by nurses who the patient had made his wishes clear. He did not want to
care for dying patients. Systems of support must be in place to continue his life if it meant being dependent on mechanical
help the nurse deal with loss. Palliative care recognizes that no ventilation. The patients wife was supportive of his wishes, as
one can do this work alone. Nurses at the bedside can be sup- were his two adult children. The teams conclusion and rec-
ported by professionals from many other disciplines, includ- ommendation was to support the patients wishes and the
ing social workers, chaplains, counselors, advanced practice physicians decision to withhold further treatment, dialysis,
nurses, and physicians. Nurses who work with patients requir- and to withdraw ventilator support. The ethics team also felt
ing palliative sedation and terminal weaning are at increased the patient was making an informed decision.
risk of burnout if not intimately involved with the team A decision was reached between the ICU attending physi-
decision-making process. It is vital that these nurses be involved cian and the patient that the ventilator would be withdrawn
in the decision-making process, because they have high respon- the next morning. The following day the patient had his fam-
sibility but often low autonomy. Bedside nurses are intimately ily at his bedside while the ventilator adjustments were made.
involved in palliative sedation and the terminal weaning pro- He was sedated, and comfort measures were taken. The
cess, but, if left out of decision-making processes such as the patient was made comfortable and within 10 minutes after
team planning and family conferences, they are denied the weaning from the ventilator he died peacefully with his fam-
information needed for effective counseling at the bedside.81 ily, physician, and nurse at the bedside.
There must be a formal and informal support system as well as o]
education in end-of-life care, spiritual support, and individual
support as needed.
An interdisciplinary team meeting after death in these cases o]
can function as both a learning experience and a debrieng Conclusion
process. Working in an environment that recognizes the need
for support and education for staff, and one that recognizes In todays ICU environment, advances in technology that are
the importance of mentors and advance practice nurses, designed to prolong life have outpaced those designed to return
allows nurses to face these challenges as they arise.81 patients to a reasonable quality of life.82 This disparity has
caused ICU nurses to view death as an acceptable outcome, 13. Cowan JD, Walsh D. Terminal sedation in palliative medicine:
maintaining palliative care and symptom management, and Denition and review of literature. Support Cancer Care 2001;
ensuring a dignied, tolerable death with the more traditional 9:403407.
goals of curing disease, restoring health and function, and pro- 14. Morita T, Tsuneto S, Shima Y. Proposed denitions of sedation
moting life and survival. Nursing professionals in the ICU for symptom relief: A systematic literature review and a proposal
of operation criteria. J Pain Symptom Manage 2002;24:447453.
should train new nurses in the skills required to withdraw and
15. Peruselli C, Di Giulio P, Toscani F, Gallucci M, Brunelli C, Costan-
withhold care. These skills do not come easily; a concerted
tini M, Tamburini M, Paci E, Miccinesi G, Addington-Hall JM,
effort should be made to provide proper training to ensure Higginson U. Home palliative care for terminal cancer patients: A
patients a painless, dignied, peaceful death. survey on the nal week of life. Palliat Med 1999;13:233241.
Although many may disagree about what a good death is, 16. Krakauer EL, Penson RT, Troug RD, King LA, Chabner BA,
there is general agreement about what is a bad death. Palliative Lynch TJ Jr. Sedation for intractable distress of a dying patient:
sedation and terminal weaning are ethical and realistic interven- Acute palliative care and the principle of double effect. Oncolo-
tions in a percentage of dying patients whose symptoms remain gist 2000;5:5362.
unbearable despite aggressive palliative interventions. The con- 17. Billings JA, Block SD. Slow euthanasia. J Palliat Care 1996;12:2130.
cerns and challenges appear to be related to the lack of con- 18. Campbell ML, Carlson RW. Terminal weaning from mechanical
sistency in providing care skillfully across all settings. The ventilation: Ethical and practical considerations for patient
management. Am J Crit Care 1992:1:5256.
confusion between slow euthanasia and sedation remains, as
19. Grenvik A. Terminal weaning: Discontinuance of life-support
does a lack of agreement on palliative sedation for existential
therapy in the terminally ill patient. Crit Care Med 1983;11:394395.
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is complicated by the lack of palliative care experts in all settings DeVita MA, Rosenbaum SH, Rothenberg DM, Sprung CL, Webb
as well as the continued challenge of accurately predicting time SA, Wlody GS, Hurford WE. Recommendations for end-of-life
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22:8188. the Intensive Care Physician will indicate a physician
79. Frederich ME, Strong R, von Gunten CF. Physician-nurse con-
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physician will be known as the Alternate Physician
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80. King P, Jordan-Welch M. Nurse assisted suicide: Not an answer Contact and will be identied on the End-of-Life
in end of life care. Issues Ment Health Nurs 2003;24:4557. Orders by name and pager number.
81. Vachon M. The nurses role: The world of palliative nursing. In: Comfort measuresComfort measures are interventions
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Oxford University Press, 2001:647662. may include: regulation of hypothermia or hyperther-
82. McGee DC, Weinacker AB, Rafn TA. Withdrawing life support mia, oral care, basic hygiene, music therapy, control of
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83. Curtis JR, Rubenfeld GD. Managing Death in the Intensive Care FamilyFamily includes spouse, mother, father, sibling,
Unit: The Transition from Cure to Care. New York: Oxford Uni- guardian, or any signicant other to the patient.
versity Press, 2001.
Patient care conferenceThe family and or patient meets
84. Thorns A. Sedation, the doctrine of double effect and the End of
with the Intensive Care Physician, Attending Physician,
Life commentary. Int J Palliat Nurs 2000;341343.
nurse, social worker and other appropriate members
from the ICU healthcare team to discuss the patients
medical status. The goal for the Patient Care Conference
o] a p p e n d i x 2 4 - 1 is to develop a plan of care that may include the End-
End-of-Life Protocol of-Life Protocol.
Plan of careThe plan of care gives direction and priori-
tizes the care the patient receives.
o] Signs and symptoms of discomfortSigns and symptoms of
Introduction discomfort include, but are not limited to: agitated
behavior, altered cognition, anxiety, autonomic hyperac-
The Intensive Care Unit (ICU) healthcare team provides tivity, confusion, coughing, dyspnea, grimacing,
complex medical and nursing interventions to stabilize and increased work of breathing, irritation, moaning, pain,
improve the physical status of critically ill patients. How- restlessness, tachycardia, splinting, tenseness, self-report
ever, there are frequent situations in which the patient can- of discomfort, perspiration, stiffness, trembling and
not be stabilized, their status cannot be improved or tachypnea.
continued life-sustaining interventions would be medically When appropriateThe terms when appropriate or
inappropriate. appropriate in reference to the End-of-Life Protocol
The End-of-life Protocol is a guide and educational tool for denes a time when the patient, family and ICU
the ICU healthcare team. Consequently the patient will bene- healthcare team are present and prepared to initiate the
t from expert, competent, compassionate, consistent end-of- steps outlined in the Protocol. The timing for Protocol
life care. initiation will accommodate the needs of the patient
The End-of-Life Protocol should be initiated subsequent to and family.
a patient care conference and a written DNR order.
o]
o] Purpose
Denitions
The purpose for the End-of-Life Protocol is to guide the ICU
ICU healthcare teamThe ICU healthcare team is multi- healthcare team, promote consistency of care, and improve
disciplinary and the participants vary according to the the quality of care provided during the patients end-of-life.
needs of the patient or family. Members may include:
physicians, nurses, social worker, respiratory therapist,
ethicist, dietician, physical therapy, pharmacist, chap- o]
lain, and others depending on the patients physical Goal
and mental status.
Intensive care physicianThe Intensive Care Physician The goal for the End-of-Life Protocol is to maximize patient
supervising the initiation of the End-of-Life Protocol comfort and dignity without prolongation of life, extension of
will sign the End-of Life Orders and will be readily the dying process or hastening the dying process.
o] Promote patient comfort with a variety of

Objectives approaches including medications.
Provide physical, psychological, social, emotional,
The End-of-Life Protocol and care may include the following and spiritual resources for the patient and family.
actions: Educate and support the patients family regarding
the progression of end-of-life care and the interpre-
Create a quiet, calm, restful atmosphere with mini- tation of the clinical signs and symptoms the patient
mal medical devices and technology in the patients may experience.
room. Assist the family in meeting their needs and the
Remove or discontinue treatments that do not pro- patients needs for communication, nal expressions
vide comfort for the patient. of love, and concern.
Provide controlled and comfortable end-of-life care Assist the family in fullling familial, cultural or
for the patient. religious death rituals.
o] a p p e n d i x 2 4 - 2
Sample Institutional Policy on Palliative Sedation
REFERENCES
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o] a p p e n d i x 2 4 - 3
Sample ICU End-of-Life Orders
25o] Susan Berenson
Complementary and Alternative Therapies

in Palliative Care
I was in so much distress that I wanted to let go. You gave me the reexology and now I feel like I
want to go on living.A patient
Key Points 9=
Complementary therapies improve quality of life in patients with case study
advanced cancer. Mary, a 64-Year-Old Woman with Stage IV Lung Cancer
Complementary therapies reduce physical, psychosocial, and
Mary was a 64-year-old vivacious, beautiful woman with a
spiritual symptoms and provide comfort.
zest for life, a wonderful sense of humor, and a terric Welsh
Nurses bring hope and power to patients and families through
accent. She appeared much younger than her stated age. She
education and guidance to safe complementary therapies.
was born in Wales and immigrated to the United States at the
age of 23. She was happily married for 29 years and had a
23-year-old son, whom she adored. Mary was a strong
woman who had managed to stay sober in Alcoholics Anony-
mous one day at a time for 10 years, and who was able to stop
smoking after 35 to 40 years of smoking. She had numerous
friends and was cherished by many.
Mary was in good health until a tumor was discovered in
1998 on a routine chest radiograph. She had a right upper
lobectomy and was diagnosed with nonsmall cell lung can-
cer. No follow-up treatment was done. She was devastated by
the diagnosis, but once she recovered from the surgery, she
seemed to be back to her old self. In the fall of 1999, Mary suf-
fered from several bouts of pneumonia, shortness of breath,
sore throat, and fatigue. In summer of 2000, some cervical
lymphadenopathy was noticed; positron emission tomogra-
phy (PET) scanning showed multiple lymph node involve-
ment, including right supraclavicular, right adrenal, right
paraspinal, right diaphragmatic, and mediastinal spread. She
sought out a second opinion and transferred her care to a
major cancer center, where biopsy of the right supraclavicular
lymph node conrmed metastatic nonsmall cell lung cancer.
The nurses at the cancer center informed Mary about the
Integrative Medicine Service (IMS). Mary came to IMS sev-
eral weeks after her biopsy. She had a consultation with the
clinical nurse specialist (CNS), who also administered several
of the therapies to inpatients and outpatients. The CNS
explained that all of the therapies and classes were focused on
stress management, symptom control, and improving quality
of life. The verbal assessment of the patient by the CNS
491
revealed the following symptoms: tenderness in the right of light touch Reiki and music therapy. Often, both were
lower neck, anxiety, fatigue, nausea, and depression. The CNS offered at the same time. The nursing staff was grateful that
discussed the various therapies and asked the patient what the IMS team came and could always offer Mary something
she thought she might like. It was decided to begin with acu- that made her feel better. Mary never declined the offer
puncture to help reduce the neck pain and the nausea. Mary of these services, always had a smile when IMS appeared at
had a few sessions of acupuncture and was pleased to see a her hospital door, always nodded yes, and raised her weak-
reduction in neck pain and nausea. A few weeks later, Mary ened hand, beckoning us to approach her bedside. Her hus-
came in and talked about how worried she was about the band and son, often in attendance, were taught some of the
tumor and her symptoms. She was asked to rate her symp- Reiki touch techniques and were encouraged to join in the
toms on a scale of 1 to 10. She reported nausea 7/10, fatigue singing and gentle drumming of the music. The last words
9/10, anxiety 9/10, and depression 5/10. It was decided to give that IMS staff heard from Marys lips were, My angels.
reexology as an attempt to reduce her symptoms. After the o]
60-minute reexology session, Mary was smiling and excited
After reading this chapter, the reader should begin to
to see the rather rapid reduction of her symptoms as she
understand the rationale for the choices that Mary and
rated nausea 1/10, fatigue 1/10, anxiety 0/10, and depression
her caregivers made as she moved through the last stages of
0/10.
her life.
The following week, Mary reported that her treatment of
chemotherapy was to be given the following week and she
was experiencing a great deal of anxiety and muscle tension.
A light to moderate medical massage was given, with o]
reported relief of anxiety and muscular tension. The follow- Introduction to Complementary and
ing week, Mary came to IMS the day after her rst Alternative Therapies
chemotherapy. She reported fatigue 7/10, anxiety 8/10, depres-
sion 6/10, and some pain 5/10 in her upper back. She was There is worldwide use of complementary and alternative med-
given again a light to moderate massage with the resulting icine (CAM) by cancer patients for many reasons (Table 251),
reduction of fatigue 1/10, anxiety 0/10, depression 3/10, and but many of the oncologists and nurses that provide care
pain 2/10. She left smiling and said, This was a great way to for cancer patients have limited or no knowledge of these
end my day. therapies or their benets versus risks. Complementary medi-
Mary continued to come weekly to IMS as she received her cine has become an important aspect of palliative and sup-
chemotherapy. She reported more fatigue and cried at times portive cancer care.1 The management of debilitating physical
about her son, her thinning hair, wondering if there would be
a future, and being less able to do life. Because she was
weaker and had very low platelet counts, reexology was Table 251
more the therapy of choice, with the resulting relief of anxi- Reasons for Use of Complementary and Alternative
ety and some of the fatigue. She reported, I feel like I could Medicine
go out dancing. Marys disease course was complicated by
Poor prognosis
shortness of breath, chest pain from a pulmonary embolus, a
deep vein thrombosis (DVT) in the right neck, and a DVT of Focus of care is comfort not cure
the left lower leg. She required hospitalization and was very Desire to be more active in ones own health care
frightened. Reexology and massage were contraindicated, Reduce side effects of treatment
but Reiki was offered. Mary responded beautifully to Reiki; as Reduce side effects of the disease
her anxiety decreased, she reported, You are my angels that
Desire to cover all the options
help me get through these tough times.
Suggestions by family/friends/society to try it
Mary was discharged after the placement of a Greeneld
lter to prevent further movement of emboli and was started Philosophical or cultural orientation
on the anticoagulant Fragmin. She returned to IMS to learn Less expensive than conventional medicine
meditation and attended the chair aerobics class to learn Easier access to health food store than physician
exercises to help decrease breathlessness and fatigue and to Dissatisfaction with or loss of trust in conventional medicine
increase her endurance for everyday activities.
Desire to treat the disease in a natural way
Mary did well for another month but then it became clear
Hope of altering the disease progression
that her disease was progressing with the development of
pleural effusions, chest pain, and increasing shortness of Decrease the feelings of helplessness and hopelessness
breath. She required constant nasal oxygen and wore a Fen- Improve the immune system
tanyl patch for her chest pain. Mary eventually needed to be Improve overall health
admitted again, and this time it was for the last time. IMS saw Improve the quality of ones life
her frequently and was able to offer her the soothing benets
Complementary and Alternative Therapies in Palliative Care 493
symptoms, particularly in terminally ill patients, is integral to be CAM changes continually, as therapies that are proven to
good palliative care. When curative treatment is no longer an be safe and effective become adopted into conventional health
option, the emphasis of care shifts to palliation and symptom care.
management. Comfort measures become the main focus.2 Although they are grouped together, complementary and
Many patients in the advanced stages of cancer seek treat- alternative therapies are very different. Complementary thera-
ments outside conventional medicine in hopes of a cure and pies are used together with conventional care. They are not
better management of the debilitating physical symptoms. promoted as cancer cures but are used as soothing, noninva-
Some CAM therapies can improve quality of life, such as man- sive therapies to provide comfort and increase the quality of
agement of pain, dyspnea, nausea and vomiting, fatigue, anxi- life to patients (Table 252). The goals of complementary can-
ety, depression, insomnia, and peripheral neuropathy, whereas cer care are to promote relaxation, reduce stress and anxiety,
others may be potentially harmful or useless. It is difcult, if not relieve pain and other symptoms, reduce adverse effects of
impossible, for most readers to distinguish between reputable conventional therapies, and improve sleep.1 An example of a
treatments and promotions of unproven alternatives pushed by complementary therapy is the use of reexology to help to
vested interests. CAM is complicated because of its unfamiliar lessen patients anxiety as they await a painful procedure.
terminology, large numbers of available therapies, and the con- In contrast, alternative therapies are used in place of sur-
troversial anecdotal stories versus good research studies. It is gery, chemotherapy, and radiation therapies. They are inva-
confusing for patients, families, doctors and nurses to nd their sive, biologically active, and unproven and are promoted as
way through to the most effective and safest choices. viable cures and alternatives to be used in place of mainstream
In this chapter, the focus is on the most helpful complemen- cancer treatments.6 Some examples of alternative therapies are
tary therapies. Cancer is used as a model of chronic progressive Laetrile, dietary cancer cures, oxygen therapy, and biomagnet-
disease. Most of the literature and research on CAM is related to ics. There is not a single alternative intervention (as opposed
cancer but can be expanded to cardiac, liver, and lung disease, to mainstream therapies) that has been demonstrated to con-
diabetes, and other illnesses. Evidence-based complementary stitute an effective cure for cancer.1 Alternative therapies can
therapies are shown to affect in safe ways patients physical, misguide, raise false hopes, and nancially exploit patients and
emotional, and spiritual well-being. Individuals who can par- may be associated with signicant risks. They may prevent
ticipate in their care in the last stages of their illnesses are often patients from seeking known, helpful medical oncological
more hopeful and positive than those who are passive partici- interventions.7
pants. Patients in the advanced stages of their disease can par- Integrative oncology medicine promotes the use of evidence-
ticipate in their care by knowing that they have options to based complementary therapies along with mainstream cancer
promote comfort and quality of life. It is the role of nurses to treatments. At a major comprehensive cancer center, Memor-
educate themselves, their patients, and families to assist in the ial Sloan-Kettering Cancer Center (MSKCC) in New York
critical decision-making of CAM.
The goals of this chapter are (1) to dene terms related to
CAM; (2) to list, dene, and describe the benets and risks of
the most common CAM therapies; (3) to emphasize the most Table 252
beneficial evidenced-based complementary therapies along Evidence-based Complementary Medicine Therapies for
with the supportive research; and (4) to describe the role of the Symptom Control and Quality of Life
nurse as an educator, researcher, and clinical practitioner in
Physical Cognitive
the setting of CAM. Patients look to their nurses to guide them
to make informed and safe complementary therapy choices. Acupuncture Art therapy
Nurses can bring hope and power to their patients and fami- Acupressure Biofeedback
lies by teaching, supporting, and encouraging the use of safe
Aromatherapy Creative visualization
complementary therapies when indicated.
Chiropractic medicine Focused breathing
Exercise Guided imagery
Denitions
Massage Hypnosis
CAM can include anything that is not conventional Western Nutrition Meditation
medicine or found in hospitals.3,4 CAM is a group of diverse Polarity Music therapy
medical and health care systems, practices, therapies, and prod-
Qi gong Progressive muscle
ucts that are not presently considered to be part of conven- relaxation
Reexology
tional medicine. They range from adjunctive modalities that
effectively enhance quality of life and promising antitumor Reiki
herbal remedies now under investigation to bogus therapies Shiatsu
that claim to cure cancer and that harm not only directly, Therapeutic touch
but also indirectly by encouraging patients to avoid or post- Yoga
pone effective cancer care.5 The list of what is considered to
City, Integrative Medicine practitioners of massage, reexol- tion, and those who have been hospitalized in the past year
ogy, Reiki, meditation, acupuncture, art therapy, and music more likely than those who have not been hospitalized to use
therapy work with inpatients who have been self-referred or CAM.
referred by doctors, nurses, or other hospital professionals.
Outpatients are offered these same therapies along with nutri- Cancer Population
tional counseling, yoga, Tai chi, Qi gong, and other exercise
classes. Among cancer patients, rates of CAM use are usually higher
than in the general population. But Ernst and Cassileth,10 in
History 1998, found that the average use in 26 surveys from 13 coun-
tries was 31.4%, ranging from 7% to 64%. They believed that
The history of medicine is lled with descriptions of persons lack of specicity and inconsistent denitions of CAM to
using herbs, potions, and physical and spiritual manipulations have contributed to this variability. For example, some studies
to heal the sick. Traditional medicine came into being in the included counseling, group therapy, prayer, wellness regi-
United States in the late 1890s when physicians began to develop mens, and self-help efforts as CAM, whereas others counted
the science of medicine, with a focus on cure. Anything other these as mainstream therapies. Another study reported 63%
than the allopathic physician using science-based diagnosis use of CAM therapies by adult cancer patients enrolled in an
and prescribing tested medicines began to be considered quack- National Cancer Institute (NCI) clinical trial.11 Higher use
ery.8 The healer became pass. Recently, however, there has among women and among patients with higher education was
been a resurgence of interest in the use of herbal and other also observed. Sixty-two percent of the patients in this study
CAM therapies that fall outside mainstream medicine. People reported that they would have liked to talk to their physicians
are living longer with chronic diseases, cancer being one of about the use of these therapies, but 57% said that their physi-
them. Patients look to CAM therapies to help with quality of cians did not ask them about CAM therapies.
life, to allow them to participate in their own self-care, and to
provide a glimmer of hope and maybe a cure. Physicians and Rural Cancer Population
nurses are voicing concerns that patients are being misled
about CAM therapies, are wasting their time and money, are One study looked at the use of only complementary therapies
putting themselves in harms way, and are not reporting the in a rural cancer population.12 Eighty-seven percent of the
use of these therapies to the medical team. patients were using at least one complementary therapy, most
The increasing use of CAM by the American people commonly prayer, humor, support group, and relaxing music
prompted the United States Congress to establish in 1992 the and visualization. Again, women were found to be more inter-
Ofce of Alternative Medicine (OAM) as part of the National ested in CAM, but education and income did not seem to
Institutes of Health (NIH). In 1998, the name was changed to make a difference in this population.
the National Center for Complementary and Alternative Med-
icine (NCCAM), and a larger budget was assigned. NCCAMs Comprehensive Cancer Center
mission is to explore complementary and alternative healing
practices in the context of rigorous science, to train CAM In an outpatient clinic in a comprehensive cancer center, 83%
researchers, and to inform the public and health professionals of the patients had used at least one CAM therapy.13 When
about the results of CAM research studies. psychotherapy and spiritual practices were eliminated, 68.7%
had used at least one other CAM therapy. Use of multiple
Prevalence CAM therapies with conventional treatment was widespread,
disclosure of CAM to the physician was low, and seeking infor-
General Population mation about CAM was high.
The use of CAM by the general population in the United Breast Cancer Patients
States is common, widespread, and on the rise. In a national
health interview survey conducted by the Centers for Disease The prevalence of CAM among breast cancer patients varies
Control and Prevention (CDC) in 2002, use of CAM thera- but is higher than in the general population. New use of CAM
pies among U.S. adults was 36% when prayer was excluded after surgery in patients with early-stage breast cancer (28.1%)
and 62% when prayer for health reasons was included.9 Some was thought to be a marker for greater psychosocial distress
publications cite prayer as a CAM therapy. Prayer has been and worse quality of life.14 It was suggested that physicians
with us for a long time and is not considered to be a CAM in take note of such usage and evaluate patients for anxiety,
the strict sense of the term; it is excluded from further discus- depression, and physical symptoms. The prevalence of CAM
sion as a CAM therapy in this chapter. Other ndings of the use among breast cancer survivors in Ontario, Canada, was
CDC study were that women are more likely than men, black 66.7% and was mostly associated with the hope of boosting the
adults more likely than white or Asian adults, persons with immune system.8,15 Women with breast cancer tended to use
higher educations more likely than those with lower educa- more CAM, compared with patients with other malignancies
(63% versus 83%, respectively).8,16 In the largest patient cohort 35% of all self-reported supplements actually were documented
to date (500 women with breast and gynecological cancers), in the patients chart by the physician. This created potential
48% of the breast cancer patients used CAM therapies, and the risks, because some patients were found to be taking CAM
number increased to 58% after patients who had recurrent with anticoagulant properties along with prescribed anti-
disease were included.17 These higher percentages may be coagulants.
indicative of the patients high level of distress, but they may
also indicate the seeking of hope and attempts to control their Cost
situations.
Most insurance companies do not reimburse for CAM. The cost
Pediatric Population of CAM may prevent many patients from receiving these thera-
pies. There is a movement before the U.S. Congress to begin to
CAM therapies are infrequently studied in pediatric popula- acknowledge the value of these therapies and to reimburse for
tions. Parents of patients were surveyed in British Columbia them. It is suggested that patients check with their insurance
between 1989 and 1995. CAM was found to be used by 42% of companies to see whether use of CAM can be reimbursed. There
the patients.18 Relaxation techniques and imagery were used to is hope that reimbursement will be soon forthcoming.
reduce chemotherapy side effects in children and adolescents.19
At MSKCC, reexology, imagery, and music therapy are suc-
cessful used in the pediatric population for the symptoms of o]
pain and anxiety. There is some evidence from letters pub- Overview of Complementary and
lished in the New England Journal of Medicine20 that some Alternative Therapies
parents choose alternative approaches, where evidence of ef-
ciency is lacking, rather than conventional evidence-based CAM therapies have been grouped into five major domains
therapies. Use of conventional and alternative therapies simul- by the NCCAM: (1) alternative medical systems (traditional
taneously is also of concern, because there could be a harmful Chinese medicine, ayurvedic medicine, homeopathic medi-
reaction between the two. The possibility of simultaneous use cine, naturopathic medicine, Native American medicine, and
calls for education and discussion with the parents and fami- Tibetan medicine); (2) mindbody interventions (medita-
lies about known risks and the recognition that doing every- tion, focused breathing, progressive muscle relaxation, guided
thing may be harmful.21 imagery, creative visualization, hypnosis, biofeedback, music
therapy, and art therapy); (3) biologically based therapies,
Ethnic Differences nutrition, and special diets (e.g., macrobiotics, megavitamin
and orthomolecular therapies, metabolic therapies, individ-
There appears to be a relation between ethnicity and CAM ual biological therapies such as shark cartilage) and herbal
use. In a diverse population in Hawaii, CAM use was highest medicine; (4) manipulative and body-based methods (mas-
among Filipino and Caucasian patients, intermediate among sage, aromatherapy, reflexology, acupressure, Shiatsu, polar-
the Native Hawaiians and Chinese, and signicantly lower ity, chiropractic medicine, yoga, and exercise); and (5) energy
among Japanese patients.22 The preferences were as follows: therapies (Reiki, Qi gong, and therapeutic touch). The cur-
Filipinos, religious healing or prayer; Japanese, vitamins and rently popular therapies are discussed in the following sec-
supplements; Chinese, herbal therapies; Native Hawaiians, tions. Many of these methods are not proven, whereas others
religious healing, prayer, vitamins, supplements, massage, and have been documented as helpful complementary therapies.
bodywork; and Caucasians, vitamins and supplements along Counseling, group therapy, prayer, and spirituality, which
with support groups and homeopathy. A study by Lee and we already know to be very helpful to cancer patients, are not
associates23 on the use and choices of CAM by women with included in this CAM chapter, because many view them as
breast cancer in four ethnic populations revealed that Blacks part of mainstream therapies.
most often chose spiritual healing, Chinese chose herbal reme-
dies, Latinas chose dietary therapies and spiritual healing, and Alternative Medical Systems
Whites chose dietary methods and physical methods such as
massage and acupuncture. Another study of Navajo patients Instead of disease-oriented therapies, ancient systems of heal-
revealed that 62% used Native healers but did not see a conict ing were based on attributing health, illness, and death to an
between the use of a native healer and use of conventional med- invisible energy or life force and the suggestion of an interac-
icine.24 These studies suggest that culture can inuence CAM tion between the human body, human kind, the spirit world,
choices and should be considered when caring for patients. and the universe. In the earliest of times, there seemed to be a
link between religion, magic, and medicine. This is in contrast
Elderly to modern Western medicine, which is focused on the cause
and curing of the disease. These alternative medicine systems
Another study25 found CAM use in older adults (65 years of are briey discussed in this chapter because they are followed
age and older) to be 64%. This study also revealed that only by many people today. The best known examples of alternative
medical systems are traditional Chinese medicine (TCM), emotional, and spiritual harmony.28 Many of the basic princi-
Indias Ayurvedic medicine, homeopathic medicine, naturo- ples are similar to those of Chinese medicine. Ayurveda is a
pathic medicine, Native American medicine, and Tibetan natural system of medicine that uses diet, herbs, cleansing and
medicine. Ancient healing systems tend to remain unchanged, purication practices, meditation, yoga, astrology, and gem-
unlike modern medicine, which keeps growing and expanding stones to bring about healing. It sees causation of disease as an
on a regular basis. A common feature across alternative med- accumulation of toxins in the body and an imbalance of emo-
ical systems is an emphasis on working with internal natural tions. It prescribes individualized diets, regular detoxication,
forces to achieve a harmonic state of mind and body, which cleansing from all orices, meditation, and yoga as some of
can promote a sense of well-being and comfort. This idea, the therapies. There is no scientic evidence that Ayurvedic
although outmoded and unscientic, has great appeal for medicine healing techniques cure illness.
many in the general public and especially for cancer patients
dealing with advanced disease. Homeopathic Medicine
Traditional Chinese Medicine Homeopathy is a medical system that was devised by Samuel
Hahnemann 200 years ago, when the causes of diseases, bac-
The cornerstone concept in Chinese medicine is qi (life force), teria and viruses, were unknown and little was understood
which is energy that ows through the body along pathways about the workings of the bodily organs. The thinking was
known as meridians. TCM views people as ecosystems in that symptoms of ill health represent expressions of dishar-
miniature.26 Any imbalance or disruption in the circulation of mony within the person and attempts of the body to heal
Chi or qi (pronounced chee) is thought to result in illness. itself and to return to a state of balance. It is the person, not
Restoration of ones health is therefore dependent on return- the disease, that needs treatment. The treatment of disease
ing the balance and ow of the life force. A TCM diagnosis is is based on the principle, Like cures like. Homeopathic
based on examination of the persons complexion, tongue, medicines are made by taking original substances from
radial pulse, and detection of scents in bodily materials. plants, animals, and minerals and highly diluting them. It is
Treatment is geared toward correcting imbalances or dis- believed that the bodys own healing ability is stimulated by
ruptions of the qi, primarily with herbal formulas and acu- these medicines. Homeopathic medicines are sold over the
puncture.26 counter without prescription. They are so dilute that they
Acupuncture is one of the best known forms of CAM. It is are thought to have no side effects and at the same time to be
one component of TCM. It is based on the belief that qi, the ineffectual for medical conditions, including cancer-related
life force, flows through the human body in vertical energy conditions.
channels known as meridians. There are 12 main meridians,
which are believed to be dotted with acupoints that corre- Naturopathic Medicine
spond to every body part and organ. To restore the balance
and flow of qi, very fine disposable needles are inserted into Naturopathy is more of a philosophical approach to health
the acupoints just under the skin. Other stimuli can be used than a particular form of therapy. It is an alternative medical
along with acupuncture, such as heat (moxibustion), suction system that attempts to cure disease by harnessing the bodys
(cupping), external pressure (acupressure), and electrical own natural healing powers, and restoring good health and
currents (electroacupuncture). The biological basis of qi or preventing disease. Rejecting synthetic drugs and invasive pro-
meridians has not been found, but is thought that acupunc- cedures, it stresses the restorative powers of nature, the search
ture needling releases endorphins and other neurotransmit- for the underlying causes of disease, and the treatment of the
ters in the brain.27 There is good evidence in the oncology whole person. It takes very seriously the motto, First, do no
literature that acupuncture helps control pain and nausea harm. Naturopathic medicine began as a quasispiritual back
and vomiting. There is current research on its possible effec- to nature movement in the 19th century. European founders
tiveness for fatigue and dyspnea. Risks associated with acu- advocated exposure to air, water, and sunlight as the best ther-
puncture include mild discomfort or occasionally a drop of apy for all ailments and recommended spa treatments such as
blood and or a small bruise at the site of the insertion, but hot mineral baths as virtual cure-alls. This system relies on
they can include more serious problems, such as an infection natural healing approaches such as herbs, nutrition, and move-
or (in the most extreme case) a pneumothorax, which is ment or manipulation of the body. Most naturopathic reme-
rare and depends on the training and experience of the dies are considered harmless by conventional practitioners,
acupuncturist. but using naturopathy instead of conventional medicine is not
wise.28
Ayurvedic Medicine
American Indian Medicine
The term Ayurveda comes from Sanskrit words ayur (life) and
veda (knowledge) and is about 5000 years old. Ayurvedic med- Native American medicine is a system of healing that is used as
icine is based on the idea that illness is the absence of physical, the primary source of medical care or in combination with
Western medicine. Physical illness is attributed to spiritual Meditation

causes or evil spirits. Healing involves activities that appease
the spirits, rid the individuals of impurities, and restore them Meditation is the intentional self-regulation of attention. It
to a healthful, spiritually pure state.28 The central gure in enhances concentration and awareness as the individual focuses
American Indian healing is the medicine man (healer, sor- systematically and intentionally on particular aspects of inner
cerer, seer, educator, and priest), often called shaman. Shamans or outer experience. It allows one to stay present in the
are trained spiritual healers who seek to drive the evil spirits moment and without judgment.30 Historically, most medita-
out. Four healing techniques are practiced by Native Ameri- tion practices were developed within a spiritual or religious
cans: purifying and purging the body through the sweat lodge, context with the goal of spiritual growth, personal transfor-
the use of herbs, involvement of shamanic healers, and sym- mation, or transcendental experience.31
bolic rituals. Shamanistic methods included incantations, There are two categories of meditation: concentration and
charms, prayers, dances, shaking of rattles, beating of drums, mindfulness. Concentrative methods cultivate one-pointedness
and sucking to remove disease. Native American healing is of attention and start with mantras (sounds, words, or phrases
more spiritual and magical than scientic. There are anecdotal repeated), as in Transcendental Meditation (TM). Mindfulness-
reports of healers curing diseases, but these have not been for- based stress reduction (MBSR) practices start with the obser-
mally investigated.28 The most important evidence of Native vation of thoughts, emotions, and sensations without judgment
American inuence on traditional American medicine is the as they arise in the eld of awareness.30 Meditation can help
fact that >200 indigenous medicines that were used by one or individuals connect with what is deepest and most nourishing
more tribes have been listed in the Pharmacopeia of the United in themselves, and to mobilize the full range of inner and outer
States of America.29 resources available to them.30 Meditation has been helpful for
terminally ill cancer patients. It has shown to be helpful in the
Tibetan Medicine relief of physical and emotional pain when integrated into a
palliative care program. Many dying cancer patients discover
Tibetan medicine views the human body as an ecological that the calmness and quiet of meditation promotes a pro-
system, a microcosm directly related to the macrocosm of the found feeling of acceptance, well-being, and inner peace.30
world. It attempts to investigate the root causes of illness. The Walking meditation is appealing to those that cannot sit
belief is that all of the material that makes up our universe is still. The focus might be on taking one step at a time, smelling
based on the qualities of ve basic elements (earth, water, re, the fresh air, taking in one breath at a time, or listening to the
wind, and space). It is understood through experience that birds as one walks along.
natural environmental forces can inuence the functioning of
the human organism. The Tibetan doctor bases his practice of Relaxation Techniques
diagnosis on his own spiritual practice, intellectual training,
and intuition. The Tibetan medical diagnosis is a result of the Relaxation techniques are those simple techniques that, when
patient interview, observation of the urine, taking of the 12 learned by the patient, can promote relaxation. They include
pulses, looking at the sclera and surface of the tongue, and progressive muscle relaxation (contracting and relaxing mus-
feeling for sensitivity on certain parts of the body. The treat- cle groups one at a time from head to toe), passive progressive
ment is similar to that used in Chinese medicine, especially muscle relaxation (no contraction of muscles, but focusing in
herbs. the mind on sequentially relaxing groups of muscles),32 focused
breathing (counting of breaths as one exhales, which can be
MindBody Interventions used by itself or as an introduction to guided imagery).
Mindbody medicine uses a variety of techniques designed to Guided Imagery

enhance the minds capacity to effect change in bodily func-
tions and symptoms. The ability to inuence health with the Imagery is the thought process that invokes and uses the
mind is an extremely appealing concept, especially for patients senses: vision, audition, smell, taste, sense of movement, posi-
who feel out of control. These are distraction techniques. To tion, and touch. It is the communication mechanism between
afrm the power of the individual, when a person can feel so perception, emotion, and bodily change.33 Imagery is a natu-
powerless, is very attractive. Some good documentation sup- ral phenomenon in our lives that occurs all day long. For
ports the effectiveness of meditation, guided imagery, biofeed- example, when we wake in the morning, we might imagine
back, and yoga in stress reduction and the control of symptoms. our day, where we will be going, what we will wear, what we
The ability to control stress or other symptoms was expanded will eat. Imagery is used as a distraction technique that allows
to the notion of controlling or curing the disease. There is no the patient to shift the focus from distress (e.g., pain, anxiety,
evidence that patients can control their disease through men- nausea) to the sensory details of a past pleasant experience.
tal work. Furthermore, this approach can backre on patients; This usually distracts the patient enough so that some of the
they may feel guilty, responsible, and a failure as disease pro- physical and emotional symptoms decrease. Guided imagery
gresses despite their best mental efforts. allows a practitioner to help the cancer patient through his or
her own past positive experiences or to create a positive image electroencephalography) that ordinarily cannot be perceived
of the future along with the patient. It is a very effective ther- without amplication. Patients are guided through relaxation
apy for symptom control. Guided imagery can be taught to and imagery exercises and are instructed to alter their physio-
nurses and family members so that they can affect the quality logical processes using as a guide the provided biofeedback
of the patients life.32 Guided imagery is contraindicated in a (typically visual or auditory data). The primary objective of
patient with cognitive impairment. biofeedback is to promote relaxation. It is a noninvasive pro-
cedure. It has been shown to be effective for anxiety and ten-
Creative Visualization sion headaches.
Creative visualization is the technique of using the imagination Music Therapy

to create what one wants in life physically, emotionally, men-
tally, or spiritually. It is using the imagination to create a clear Music therapy in the palliative care setting is essential. Music
image of something one wishes to manifest. For the patient in can break the cyclic nature of pain, alter mood, promote relax-
the end stage of disease, visualization might take the form of ation, and improve communication.36 Music can facilitate the
imagining being at home again, feeling calm or more comfort- participation of the patient with family and hospital staff. Music
able, visiting with a loved one, or going to that quiet still place therapists apply psychotherapeutic skills in the setting of music
within. The patient continues to focus on the idea or image as they care for patients with advanced cancer. Music therapy
regularly, giving it positive energy, until what is being visual- interventions consist of use of precomposed songs (reecting
ized is achieved. It is preceded by relaxing into a deep medita- messages or feelings that are foremost in the patients thoughts),
tive state. It is based on the following principles: the physical improvisation (offering opportunities for spontaneous expres-
universe is energy (including individuals and their thoughts); sion and discovery), chanting and toning (use of vocalization to
energy is magnetic (energy of a certain quality attracts energy promote attentiveness and relaxation), imagery (exploration of
of a similar quality); form follows idea (the idea has energy images and feelings that arise in the music), music listening
that attracts and creates that form on the material plane; it techniques (which facilitate reminiscence and build self-esteem
magnetizes and guides the physical energy to ow into that through reection on accomplishments), and taping of the
form and eventually manifest on the physical plane); and the music session as a gift for the family.36 Music therapy may help
law of radiation and attraction (we attract into our lives what to facilitate a life review for the patient. It can also help in man-
we think about).34 The point is that each individual is the agement of the most common symptoms of advanced cancer:
constant creator of his or her life and has the means to bring pain,37 anxiety and depression,38 nausea and vomiting,39 short-
himself or herself to a more comfortable place physically, ness of breath,40 and sleeplessness.39 Live music has been shown
emotionally, mentally, and spiritually. There is no evidence to be more effective than taped music.41
that creative visualization is curing cancer, but it can be very
effective for symptom management. Art Therapy
Hypnosis Art therapy is a form of psychotherapy. Art therapists are

trained professionals. Art therapy focuses on assisting patients
Relaxation and imagery techniques are often used to induce an to express, explore, and transform sensations, emotions, and
altered state of consciousness or a hypnotic trance state. All thoughts connected with physical and psychological suffer-
hypnosis is self-hypnosis. A trained professional can teach a ing.36 In art therapy, the art therapist and the art materials
patient to enter a hypnotic trance state. It is important, clini- (e.g., paper, colored markers, oil pastels, cut-up images from
cally, to recognize and this state, because in it the individual is magazines) help patients get in touch with their feelings, their
typically more suggestible, or more receptive to new ideas and fears, and their hopes and put them out onto the paper, thus
initiation of new behaviors. According to Milton Erikson, in helping patients process their experience of illness. It can eas-
hypnosis the limits of ones usual frame of reference and ily be accommodated to hospitalized inpatients as well as to
beliefs are temporarily altered so that one can be receptive to outpatient art groups or individuals. Art therapy can assist
other patterns of association and modes of mental function- patients with advanced-stage cancer in the management of
ing that are more conducive to problem solving.35 Hypnosis pain, fatigue, and stress.42 Art images can serve to help the
has been shown to be helpful in the management of pain, dys- dying patient with issues of anger, bereavement, and loss. The
pnea, anxiety, and phobias. It is contraindicated in patients art therapist may help dying patients nd personal symbols
with cognitive impairment. to express something so powerful and so mysterious as the end
of life.42
Biofeedback
Biologically Based Therapies
Biofeedback involves the use of devices that amplify phys-
iological processes (e.g., blood pressure, muscle activity, Alternative diets have an ancient history, both medical and
skin temperature, perspiration, pulse, respiratory rate, and cultural, of plants and herbs as the rst medicines. The example
of vitamin C curing scurvy reinforces the idea of foods being Metabolic Therapies. Metabolic therapies are based on the
medicines and curing illness. Some of the ancient medicine sys- theory that disease is caused by the accumulations of toxic
tems are still being practiced today; for example, Ayurvedic substances in the body. The goal of treatment is to eliminate
medicine uses special diets, herbs, and cleansings to treat ill- the toxins. Metabolic therapies usually include a special diet;
ness and promote health. high-dose vitamins, minerals, or other dietary supplements;
Todays food pyramid recommends ber, grains, fruits and and detoxication with coffee enemas or irrigation of the
vegetables, and less protein, meat, and dairy products than was colon. Colon detoxication is not used in mainstream medi-
emphasized in earlier U.S. Department of Agriculture govern- cine, and there are no data to support the claims that dried
ment guidelines. It emphasizes balance. Changes in guidelines food and toxins remain stuck in the walls of the colon. The
are based on carefully controlled scientic studies. Many alter- development of metabolic therapy is attributed to Max Ger-
native and fad diets, herbs, and supplements are either not sci- son, a physician who emigrated from Germany in 1936. Today,
entically validated or are marketed despite having been found cancer is the most common illness treated with metabolic
worthless or harmful. therapies. Research does not substantiate the beliefs and prac-
tices of metabolic therapies, and patients may lose valuable
Nutrition time during which they could be receiving treatments with
proven benets.
Some alternative practitioners believe that dietary treatments
can prevent cancer or even go a step further to believe that Individual Biological Therapy. Advocates of shark and bovine
foods or vitamins can cure cancer. The American Cancer Soci- cartilage therapy claim that it can reduce tumor size, slow or
ety Guidelines on Nutrition form the basis for a healthful diet stop the growth of cancer, and help reverse bone diseases such
that emphasizes vegetables, fruits, legumes, and whole grains; as osteoporosis. More importantly, shark and bovine cartilage
low-fat or nonfat dairy products; and limited amounts of red are thought to play a role in angiogenesis, which involves halt-
meat (lean preferred). Special dietary problems should be dis- ing the blood supply to cancer cells. There is no rm evidence
cussed with the doctor and an oncology registered dietitian. It that cartilage treatment is effective against cancer.
should be emphasized to the patient and family that the doc-
tor should be informed before the patient takes any vitamin, Herbal Medicine
mineral, or herb.
Herbs have been used as medicines going back to ancient
Special Diets times. Belief in the magic of herbs for the treatment of cancer
exists today, especially in the face of advanced cancer and few
Macrobiotics. The philosophy of the microbiotic diet is curing or no options. There is a romance about herbs in that they are
through diet. It was developed in the 1930s by a Japanese natural and come from the earth and therefore must be pure,
philosopher, George Ohsawa. Originally, the diet consisted of safe, and harmless. A major concern exists that patients are using
brown rice with very little liquid. It was nutritionally decient. herbs indiscriminately on a routine basis without knowledge
Today it consists of 50% to 60% whole grains, 25% to 30% that they interact with drugs, can interfere with the efcacy
vegetables, and the remainder beans, seaweeds, and soups. of anticancer drugs, and can cause death.45 There is a lack of
Soybean foods are encouraged, and a small amount of sh is knowledge that most herbal remedies have not been tested in
allowed. In-season foods are preferred. Proponents of this diet carefully designed clinical studies.46 Currently, some herbal
believe that it cures cancer. There is no evidence that the mac- remedies are being studied for their ability to induce or extend
robiotic diet is benecial for cancer patients. a cancer remission. We must remember and teach our patients
that herbs have potency comparable to that of pharmaceuti-
Megavitamin and Orthomolecular Therapy. Some alternative cals.47 They can cause medical problems such as allergic reac-
practitioners believe that huge doses of vitamins can cure can- tions, toxic reactions, adverse effects, drug interactions, and
cer. Linus Pauling coined the term orthomolecular, meaning drug contamination.26
large quantities of minerals and other nutrients. His claim An important aspect of cancer care is to recognize that
that large doses of vitamin C could cure cancer was disproved. herbs can be toxic to cancer patients and should be discussed
There was no evidence in 1979 that megavitamin or orthomol- with the doctor and other qualied practitioners. MSKCC
ecular therapy was effective in treating any disease.43 In 1985, advises patients to avoid taking any herbs for 2 weeks before
Moertel and colleagues44 showed that vitamin C was ineffec- any cancer therapy and to refrain from using supplements
tive against advanced malignant cancer. There are side effects while in the hospital. Some herbs, such as St. Johns wort,48
to the overdosing of vitamins and minerals.28 A nutritionally may interfere with the effectiveness of chemotherapy. Garlic may
healthy diet is recommended for overall good health. Some alter clotting times in a surgical candidate. Dong qui may
people have special needs and may require supplements. make the skin more sensitive to burns during radiation. The
Patients should not attempt to treat themselves with mega- active ingredients in many herbs are not known. In the United
doses of vitamins or minerals, but should seek professional States, herbal and other dietary supplements are not regulated
attention for nutritional advice. by the U.S. Food and Drug Administration (FDA) as drugs.
This means that they do not have to meet the same standards of rubbing, stroking, tapping, or kneading the bodys soft tis-
as drugs and over-the-counter medications for proof of safety sues to inuence the whole person. Simms2 suggested that
and effectiveness. Identifying the active ingredients and under- touch is a fundamental element in patient care that can encour-
standing how they affect the body are important areas of age better communication and promote comfort and well-
research being done by NCCAM. Differences have been found being. The concern of the medical profession and patients has
in some cases between what is listed on the label and what is in been that massage would spread cancer cells. There is no evi-
the bottle, and some contaminants have been identied as heavy dence that this is the case, because the stimulation caused
metals, microorganisms, or unspecied prescription drugs by massage is no more than everyday exercise.53 The benets of
and adulterants. Standardization and authentication of herbs massage are many and include improving circulation, relaxing
is important. An excellent resource to obtain information muscles and nerve tissue, releasing tension, reducing pain,
about herbs can be found on MSKCCs website for Integrative decreasing anxiety and depression, energizing, and promoting
Medicine49 and in a resource book on herb-drug interac- an overall sense of well-being. Massage is contraindicated
tions.50 The website has a consumer version as well as a profes- under some circumstances: over metastatic bones (for risk of
sional version; both are available to all at no cost. Neither the bone fracture or breakage), if the platelet count is <35,000 to
author, the hospital, nor the publisher makes any medical 40,000/mm3 (for risk of bruising), over sites of blood clots (for
recommendations about herbs; the website is specically for risk of promoting movement of a thrombus in the circula-
information. tion), and over surgical sites or rashes. Medical massage for the
Mikail and colleagues51 found in a study of medical resi- cancer patient, and especially for the end-stage cancer patient,
dents that they had a knowledge decit concerning herbal uses light pressure. Deep tissue massage is not appropriate and
medicines. Ninety percent of them wanted to learn more about is potentially harmful.
herbal medicine, including uses of herbs, contraindications,
and drug interactions, as well as talking to patients about their Aromatherapy
use. As the prevalence of herbal remedy use grows, equipping
nurses and doctors with information and vocabulary will help Aromatherapy is the controlled use of plant essences for ther-
them discuss with and offer their patients proper precautions. apeutic purposes. Essential oils are the aromatic essences of
Patients should be encouraged to talk to their doctors and plants in the form of oil or resin, which has been extracted in
nurses about the herbs they are taking. It is important to listen a highly concentrated solution.54 The history of medicinal use
with patience, and then to respond without judgment. This of plant oils goes back to ancient Egypt, China, and Renais-
approach promotes open, ongoing communication between sance Europe. Essential oils are thought to have different
the patient and the doctor and nurse. mechanisms of action: antiviral, antiseptic, antibacterial, anti-
inammatory, fungicidal, sedative, and easing congestion. Aro-
Manipulative and Body-Based Methods matherapy is often practiced with massage and has been found
to destress, empower, and promote communication and a sense
Touch is the rst sense to develop, and it is the primary way of of security.55 Aromatherapy is a delightful tool in enhancing
experiencing the world, starting with infancy up until the yoga.56 Aromatherapy should be administered only by a certi-
moment of our last breath.52 It is critical to growth and devel- ed practitioner. Essential oils should not be administered
opment. Infants, the elderly, the ill, and animals that do not orally or applied undiluted to the skin. Possible contraindica-
receive regular touch fail to thrive and eventually die. In tions to the use of essential oils are contagious disease, venous
ancient times, the laying on of hands was the early practice thrombosis, open wounds, and recent surgery. Possible adverse
of healing by touch. Medicine consisted of touch before the events are photosensitivity, allergic reactions, nausea, and
advent of pharmaceutical therapies. Today drugs, technology, headache. Many essential oils have the potential to enhance or
paperwork, and heavy patient loads keep the doctor and nurse reduce the effects of prescribed medications.57
from the bedside. Patients comment, I dont get touched very
much any more. If I do it is a medical touch, and it can hurt. Reexology
My family and friends dont seem to touch either, maybe out of
fear. Touch is a healing agent, but is underutilized by healing Reexology is touch therapy that goes back 5000 years to
practitioners. Touch is our most social sense and implies a com- ancient Egypt. It is based on the assumption that the body
munication between two people. Cultural differences in touch- contains energy owing through it. Reexology is an art and
ing are essential to keep in mind so as to always be respectful. a science that is based on the principle that there are reex
points and areas in the ears, hands, and especially the feet that
Massage correspond to every gland, organ, and part of the body. By
skillful stimulation of these areas and points with hand, nger,
Massage therapy is one of the oldest health care practices in and thumb techniques, the body systems are facilitated to
use. Chinese medical texts referred to it more than 4000 years greater balance.58 Reexology should be done to the tolerance
ago. It is one of the most widely accepted forms of complemen- of the patient; it should not hurt. Reexology is generally used
tary therapies today. Massage employs the manual techniques to reduce stress, to promote relaxation and sleep, to improve
circulation, to energize, to diminish symptoms of pain, anxi- is a system of therapy based on the premise that the relation-
ety, nausea, and peripheral neuropathy, and to promote an over- ship between structure (primarily the spine) and function (as
all sense of well-being. It can be made special and pleasant coordinated by the nervous system) in the human body is a
when preceded by an aroma foot bath. It is contraindicated if signicant health factor. Disease is considered to be the result
blood clots, infection, skin rash, bruising, or wounds are present of irregular or misaligned vertebrae and abnormal function-
on the extremities. Reexology can be performed anywhere, ing of the nervous system. Back pain is one of the most fre-
requires no special equipment, is noninvasive, and does not quent health problems, although neck, shoulder, head, and
interfere with the patients privacy. It can easily be taught to the carpal tunnel syndrome are frequently treated by chiroprac-
family to empower them to provide comfort to their loved one. tors. The normal transmission and expression of nerve energy
are essential to the restoration and maintenance of health.
Acupressure Chiropractic medicine emphasizes the inherent recuperative
power of the body to heal itself without the use of drugs or
Acupressure is the pressing of a single point or specic acu- surgery. The method of treatment usually involves manipula-
puncture point to relieve pain and stress in a particular area tion of the spinal column and other body structures to realign
or part of the body. It is acupuncture without the needles. It or readjust joints. Research evidence does not support chiro-
involves placing the nger rmly on an acupoint. More than 300 practic claims that cancer can be cured with spinal mani-
acupoints dot the lengths of the hypothesized meridians (chan- pulation. Chiropractic is not recommended for patients with
nels) that run vertically head to toe. The acupoint to be pressed advanced cancer.
is determined by the energy channel that is blocked and is caus-
ing the problem.28 Acupressure promotes relaxation and com- Yoga
fort. It should be done to the tolerance of the patient. It need not
be painful. It should not be applied near areas of fractures or Yoga is the Sanskrit word for union or oneness. It is a
broken bones, or near blood clots, wounds, sores, or bruises. centuries-old Eastern philosophy, science, and art form that
can be used as a tool to achieve inner peace and freedom.
Shiatsu Through mental (meditation) and physical (movement and
simple poses with deep breathing) techniques, pathways lead
Shiatsu is a modern outgrowth of ancient acupressure. It is a into the yoga state of oneness.56 Yoga helps align the body,
Japanese body therapy that works on the energetic pathways promotes relaxation, and reduces fatigue. There are different
(meridians) and points of access to acupuncture points in types of yoga: hatha yoga (physical posturing), pranayama
order to harmonize the energy ow (qi). The philosophy is (yoga breathing), mantra yoga (sacred sound symbols in the
rooted in TCM, which views illness as being caused by energy sound of a chant designed to awaken the left hemisphere of the
imbalances. Shiatsu, a touch therapy, was developed from an brain to rational thinking and clarity), and yantra yoga (visu-
ancient form of Japanese massage into the use of pressure with alizing symbols and energy patterns). Yoga can be accommo-
thumbs, palms, elbows, and knees and stretching, applied to dated to any patient, in any position, at any stage of their
these meridians and to the specic acupoints that are located cancer. It should be guided by an accredited yoga teacher and
on these pathways. The focus is on prevention and healing. done to the tolerance of the patient, starting out very slowly
Shiatsu is contraindicated with widespread bone metastases, and simply.
pulmonary emboli, and deep vein thromboses. The benets
are relaxation, higher energy levels, improved physical capabil- Exercise
ity, and enhanced symptom control. Light touch is suggested
for the palliative care patient.59 Patients with cancer often experience lack of energy and loss
of physical performance and strength.60 Researchers have
Polarity found that exercise can alleviate patients fatigue and improve
their physical performance and psychological outlook.61 A pi-
Polarity views good health as a balance among internal ener- lot study demonstrated that myeloma patients with bone
gies, such as earth, air, re, water, and space. When these ener- lesions were able to do a home-based exercise program, once
gies are blocked due to stress or other factors, physical and taught, without supervision and without injury.60 Another pi-
emotional problems follow. The therapist provides a series of lot study supported the suitability of exercise for the palliative
gentle stretching, light rocking, and holding of pressure points care population who were given an exercise program, which
until the bodys energy is brought into balance. Most often included 5-minute walks, arm exercises with a resisted rubber
patients report a deep sense of relaxation. band in a chair, marching on a spot, or dancing to their favorite
music.62 All patients expressed a sense of satisfaction in attaining
Chiropractic their activity levels. Individuals who knowingly and actively
participate in their care have a more positive outlook than
The hands-on joint manipulation known as chiropractic is those who are passive participants.63 Patients with advanced can-
particularly helpful for lower back pain. Chiropractic medicine cer should be assessed rst by a medical professional and then
given an individualized exercise program that they can gradu- and seems to provide comfort to patients, even without scien-
ally work into. tic evidence.
Energy Therapies
o]
NCCAM has classied Reiki, Qi gong, and Therapeutic Touch Pre-therapy Nursing Assessment
(TT) as bioeld therapies. Bioeld therapies are dened as
those therapies intended to affect energies that purportedly The nurse needs to assess the patient rst, before any therapy
surround and interpenetrate the human body. They are thought is given or ordered.
to be able to rebalance the bioeld. Some believe that these
therapies can remove the subtle causes of illness and enhance Current Medical History
overall resilience. The existence of such elds has not yet been
scientically proven. The practitioner should determine the diagnosis, extent of dis-
ease, location of tumors, sites of metastatic disease, medications,
Reiki CAM therapies (including vitamins, supplements, and herbs),
site of blood clots, surgical site, site of radiation, and blood
Reiki is a vibrational or subtle energy most commonly facili- counts. He or she should determine which positions are most
tated by light touch. Rei means universal or highest energy, comfortable for the patient. All information must be obtained
and ki means subtle energy. Reiki therapy is thought to bal- from the chart, doctor, or patient before doing a touch therapy.
ance the bioeld and to strengthen the body to heal itself. Reiki
is offered to a fully clothed individual and involves placement Remember:
of hands on the head and front and back; it may include place-
ment of hands on the site of discomfort, if desired. The gentle Do not massage on bones where there is metastatic
touch is soothing to patients and promotes deep relaxation. disease, because bones are at risk for fracture
or breakage; if the platelet count is <35,000 to
40,000/mm,3 because there is risk for bruising; on a
Qi gong
site of current radiation, due to increased fragility of
Qi gong is a component of traditional Chinese medicine that the skin; or where there are blood clots, due to the
combines movement, meditation, and regulation of breathing risk of setting a clot free to travel.
to enhance the ow of qi (vital energy) in the body, to improve There is no deep tissue massage given especially in a
circulation, and to enhance immune function. With practice, patient with advanced disease. Gentle light massage
qi gong can lower stress levels, reduce anxiety, and provide an is most appropriate.
increased well-being and peace of mind. It is important to
note that there is no evidence that qi gong exercises can increase Symptoms
resistance to illness or cure existing disease.28
Ask patients what symptoms they are currently experiencing.
Therapeutic Touch Ask patients to rate their symptoms on a scale of 0 to 10 as an
estimate of their level of distress. This is necessary to select the
TT, as described by Dolores Krieger,64 is the conscious, inten- most appropriate and the most effective CAM therapy. If the
tional act of directing universal energy with the intent to help patient has pain, medicate first, before therapy is provided;
and heal. It is dened by Nurse Healers Professional Associ- the patient is much more likely to enjoy it. Have patients rate
ates65 as an intentionally directed process of energy exchange their individual symptoms after the chosen therapy, to make
during which the practitioner uses the hands as a focus to clear to the patient and medical staff the benet of the therapy.
facilitate the healing process. TT was developed by Kreiger and
Dora Kunz in the 1970s from studying techniques of ancient Religious/Cultural Background
healing practices. It is believed that healing is promoted when
the bodys energies are in balance. The hands are usually passed What culture is the patient from? What therapies were used at
over the patient so that the practitioner can detect energy home? Are there any cultural taboos? For example, it is not
imbalances and facilitate rebalancing. It is believed to affect a acceptable for a Hasidic Jewish man to be touched by a woman.
profound relaxation response and to help with pain.66 The
effectiveness of TT was evaluated in a meta-analytic review.67 Previous Use
The results seemed to indicate that TT has a positive and
medium effect on physiological and psychological variables, What do the patients know about these therapies? Have they
although the studies had signicant methodological issues. had previous experiences? Were they positive or negative expe-
More research needs to be done. Until then, TT is safe to use riences? Do they have any fears or reticence?
Patients Requests signicant effect on the symptom of pain.78,80,82,83 It is a rela-

tively simple nursing intervention and can be quite effective in
Who is asking for these therapies? Is it the patient or the fam- <10 minutes. Relaxation and imagery can provide some pain
ily? What would the patient like to try? relief.84,85 Marcus and associates86 suggested numbing parts of
the body where there is pain through the use of hypnosis.
These therapies require that the patient be alert and not in too
o] much pain to concentrate.
Symptom Management with Evidence-Based In palliative care, music therapists provide services to treat
Complementary Therapies pain.40 Music increases the patients comfort, is soothing,
and creates a safe environment to ease the dying process.
Dying patients experience a heavy symptom burden, including Reiki, which is safe and noninvasive, facilitates relaxation and
pain, nausea and vomiting, anxiety, depression, fatigue, dysp- decreases pain. Hartford Hospital, which has a hospital Reiki
nea, insomnia, and peripheral neuropathy. When some of these program, reports that Reiki provides signicant pain relief for
symptoms are treated with medicines such as opioids, addi- surgery patients.87 Reiki, because it is a light holding touch,
tional problematic side effects, such as sedation, delirium, and can be given to any patient. MSKCC uses art therapy to help
constipation, can occur. Complementary therapies have fewer, patients communicate the painful side of their illness in such a
if any, side effects and may be more consistent to the patients way that they can feel understood and respected.88 This inter-
and familys culture and health care beliefs.68 vention, with the guidance of a trained art therapist, uses a
body outline that allows the patient to draw the location and
Complementary Therapies for Control of Pain type of physical pain and express the feelings around it with-
out guilt or shame. This may be the starting point for some
A multicenter trial of seriously ill hospitalized patients with patients who seem to be verbally unreachable and might ben-
diverse diagnoses documented that 50% of patients who died et from communicating their physical and emotional pain
in the hospital had moderate to severe pain during the last few with the result of lessening the distress.
days before death.69 Pain is highly prevalent for the patient
with advanced-stage cancer. Cancer pain can be very difcult Complementary Therapies for Control
to control; analgesic drugs do not always completely relieve it. of Nausea and Vomiting
Pain can isolate the patient from everything and everyone as
it completely takes over, preventing communication between Nausea and vomiting can greatly compromise patients quality
the patient and family. It can prevent a peaceful good-bye. The of life. The causes may be multiple, including a reaction to
following adjuvant complementary therapies can provide medications (chemotherapy, antibiotics, opiates), bad taste in
much-needed extra help for pain control: acupuncture, mas- the mouth, or bowel obstruction. Nausea and vomiting can
sage, reexology, hypnosis, music, Reiki, and art therapy. They be so severe that patients would rather discontinue their
can be chosen based on the nurses assessment and the patients chemotherapy, or wish to die. Acupuncture, relaxation tech-
wishes. niques, acupressure, reexology, massage, music, imagery art
Control of pain is the best known use of acupuncture. Ran- therapy and meditation are effective therapies for nausea and
domized trials support the use of acupuncture for acute pain, vomiting.
in dental surgery,70 and for chronic pain such as migraine Acupuncture can be used along with antiemetics. There is
headaches.71 In one study, pain control was achieved for at clear evidence that needle acupuncture is efcacious for adult
least 1 month in all of the patients with mild to moderate pain postoperative and chemotherapy-related nausea and vomit-
and in 72% of those with severe pain72; 48% of the patients in ing.89 There is often an element of anxiety with nausea and
another study reported pain relief for 3 days and an increase vomiting. Progressive muscle relaxation has been shown to be
in mobility.73 Auricular acupuncture has demonstrated anal- very effective in decreasing nausea and vomiting as well as anx-
gesic effects for cancer pain.74 One very interesting study with iety.90 In a small pilot study, nger acupressure decreased nau-
pediatric patients, ages 6 to 18 years, successfully used acu- sea in women undergoing chemotherapy for breast cancer.91
puncture and hypnosis for chronic pain.75 Acupuncture was They were taught to apply pressure to the anterior surface of
also easily integrated into an outpatient clinic, where it pro- the forearm (P6) and the back of the knee (ST36), an interven-
vided 71% relief of pain.76 tion that is easy to learn and use. Reexology was effective in
Massage therapy and aromatherapy provide pain relief and promoting relaxation, which improved nausea.82 Music ther-
a sense of well-being in cancer patients experiencing pain.7779 apy distracts patients by having them pick their own music,
Ferrell-Torry and Glick80 reported that massage reduced pain listen to live music, sing, or play an instrument, resulting in
perception by an average of 60%. Of note is a study by Walach decreased nausea.92 Music therapy is easy to implement. Guided
and colleagues,81 which found that pain improvement lasted imagery encourages patients to focus on past pleasant images
until the 3-month follow-up visit. NCCAM recommends mas- to distract from the negative experience of nausea.93,94 Art
sage for treatment of refractory cancer pain. Reexology has a therapy can be used as a distraction intervention to reduce
nausea and vomiting.95 Meditation can also distract from the An estimated 20% to 25% of cancer patients experience depres-
unpleasant sensation of nausea. sion at some time during their illness. In the advanced stages
of cancer, the incidence of major depressive syndromes increases
Complementary Therapies for Control of Anxiety to 58%.105 Factors that place patients at greater risk for depres-
sion are history of depression, advanced stage of cancer, poorly
People with advanced stages of cancer may live with chronic controlled pain, and medications. The following complemen-
anxiety and pain. The most common causes of anxiety in can- tary therapies are effective for the relief of depression: mind
cer patients with advanced disease are situational anxiety, pre- body therapies, massage, and music.
vious history of anxiety, poorly controlled pain, abnormal Depression was signicantly reduced with the use of pro-
metabolic states (e.g., hypoxia, sepsis, delirium), and side effects gressive muscle relaxation together with guided imagery in
of medications (e.g., corticosteroids, neuroleptics).96 The com- patients with advanced cancer.106 MBSR was effective in reduc-
plementary therapies that are effective for the control of anxi- ing anxiety and depression in cancer outpatients.107 Massage
ety are massage, reexology, meditation, relaxation, guided therapy achieved major reduction in pain, fatigue, nausea,
imagery, Reiki, music therapy, and exercise. anxiety, and depression at a major cancer center.98 Music therapy
Massage promoted relaxation and signicantly reduced the reduced mood disturbance in patients hospitalized for autolo-
perception of pain and anxiety.80 Meek97 reported that her gous stem cell transplantation.38 Music therapy is an invalu-
hospice patients, who were in the terminal stage of illness, able resource for diminishing suffering in advanced cancer;
received a slow stroke back massage and were provided comfort and can help the patient link to inner strengths, restore a sense
and induced relaxation. Cassileth and Vickers98 have demon- of identity, and open doorways during times of pain and loss.37
strated a 52.2% reduction in anxiety with massage. In bone Music can help the patient begin a life review and facilitate
marrow transplant patients, the strongest effects were seen nding meaning and purpose in life.39
immediately after massage, with a reduction in diastolic blood
pressure, anxiety, and nausea.99 A signicant reduction in anx- Complementary Therapies for Control of Fatigue
iety was seen 3 months after massage by Walach and colleagues.81
Family members can be taught to provide slow massage strokes Fatigue is a common symptom among patients with advanced
to soothe the patient. Reexology reduced anxiety in a ran- cancer. A multivariate analysis found that fatigue severity
domized trial of patients with breast or lung cancer.83 Gambles in advanced cancer was signicantly associated with pain and
and associates100 found that hospice patients reported 91% dyspnea.108 Portenoy and Itri109 reported that fatigue can pro-
relief from tension and anxiety after a course of six reexology foundly undermine the quality of life of patients with cancer.
sessions. There are some nonpharmacological interventions for cancer-
Many dying patients nd that the calmness and silence of related fatigue. The following complementary therapies are rec-
meditation bring profound feelings of acceptance, well-being ommended for cancer-related fatigue: acupuncture, exercise,
and inner peace.30 Cancer patients frequently experience anx- massage, reexology, mindbody therapies, and music.
iety as they anticipate entering the nal stages of life. Hypnotic MSKCC reported a 31.1% reduction in fatigue with acupunc-
relaxation has been found to signicantly reduce terminal ture in a population of cancer patients with postchemotherapy
anxiety.86 Relaxation training reduced treatment-related anxi- fatigue.110 Decreased physical activity, regardless of the rea-
ety.101 Imagery work can be a distraction that removes the son, leads to decreased energetic capacity. A pilot study pro-
patient from the stressor of the present. Reiki, which is a light vided an exercise program for advanced cancer patients,
touch therapy, promotes stress reduction and relaxation.87 resulting in increased energy and decreased fatigue.62 There is
Music therapy reduced mood disturbance in cancer patients a Chair Aerobics exercise class in the Integrative Medicine
during hospitalization for autologous bone marrow trans- department at MSKCC that is run by an oncology clinical
plantation.38 Live music was found to be more effective than nurse specialist and personal trainer. This class is a tness
taped recorded music.41 Music therapy was found to be more program targeted to help breathlessness and fatigue and
effective in decreasing anxiety in ventilator-dependent patients to improve physical and psychological well-being of cancer
than quiet time.102 Exercise is an intervention that may assist in patients. There are currently several stage IV patients in this
the reduction of anxiety.103 class, who report that it is hard to get to class because of
fatigue, but that after class they feel energized and proud to
Complementary Therapies for Control of Depression have accomplished something. Nail111 summarized a number
of nonpharmacological interventions for fatigue, including
The National Comprehensive Cancer Network (NCCN) in aerobic exercises and attention-restoring exercises. Coleman
their guidelines of 2003, chose to focus on the patients distress and colleagues60 suggested tailoring exercise to the patients
management. They recognized that distress extends along a capabilities as they move through the disease continuum, so
continuum, ranging from feelings of vulnerability, sadness, that they do not get discouraged. Massage and reexology can
and fear to disabling conditions such as clinical depression, be very stimulating as well as relaxing. Imagery can include
anxiety, panic, isolation, and existential or spiritual crisis.104 visualization of oneself as being very active. Patients can be
very stimulated by listening to energetic music or by playing platin is known to induce sensory peripheral neuropathy, and
an instrument, especially the drums. paclitaxel causes sensory and motor neuropathy. Neurological
toxicity eventually decreases the patients ability to perform
Complementary Therapies for Control of Dyspnea physical functions necessary for activities of daily living and
thus can interfere with quality of life.117
Breathlessness is an extremely distressing and frightening One study looked at the prevalence and patterns of use of
symptom that can completely dominate a patients life. It can CAM therapies in a group of outpatients with peripheral neu-
cause physical disability, high anxiety, dependence, and loss of ropathy.118 Reportedly, 43% of the patients used CAM for
self-esteem. The following complementary therapies are rec- peripheral neuropathy. The following complementary thera-
ommended for dyspnea: relaxation techniques, Reiki, reexol- pies can be helpful in the management of peripheral neuropa-
ogy, gentle massage, music, specic exercise, acupuncture, and thy: reexology and acupuncture.
hypnosis.
Lung cancer patients using breathing retraining, simple Support for the Family
relaxation techniques, activity pacing, and psychosocial sup-
port were able to reduce breathlessness from 73% to 27%.112 Caregivers of patients with cancer experience stress. They must
Reiki has been shown to reduce anxiety,113 as have reexology, learn to participate in complicated medical regimens, assist
gentle massage, and music. Reduction of anxiety aids in the patients in daily activities of living, drive or accompany them to
reduction of perceived breathlessness. Chair aerobics exercise clinics or treatments, and perhaps at the same time be respon-
helps decrease breathlessness, control panic, and improve mus- sible for nances, running of the household, and preparing for
cle tone. Acupuncture was shown to promote quality of life in the death.119,120 Perception of discomfort in the dying patient
patients with chronic obstructive asthma.114 For patients with may be another stress factor for the relatives.121 Family mem-
active, progressive, or far advanced disease, and for those with bers have difculty dealing with patients pain, dyspnea, appetite
a short life expectancy, hypnosis can provide reduction of dys- loss,122 and delirium.123 Caregivers of cancer patients undergo-
pnea and enhance coping.86 ing autologous hematopoietic stem cell transplantation were
enrolled in a study to receive massage therapy. Massage signi-
Complementary Therapies for Control of Insomnia cantly reduced anxiety, depression, and fatigue; it reduced
motivation fatigue and emotional fatigue.119
Insomnia is a prevalent problem in cancer. Studies conducted A program of care for family members is offered at MSKCC.
among heterogeneous samples of cancer patients suggest that Family members are offered massage, reexology, meditation,
between 30% and 50% of cancer patients have sleep difcul- yoga, and other evidence-based complementary therapies for
ties.115 The contributing factors, especially for advanced cancer, stress reduction.Touch Therapy for the Caregiver is a monthly
are hypoxia, pain, anxiety, delirium, medications, or with- program offered to family members, who are taught how to give
drawal from medications. The causes need to be treated, but, light upper back and neck massage to provide comfort to the
in addition, therapies that promote stress reduction and relax- patient. They are instructed to check with the patients doctor to
ation can be considered. The following complementary therapies determine where it will be safe to do gentle massage.
can be helpful in the management of insomnia: mindbody
therapies (relaxation and imagery), massage, reexology, Reiki,
exercise, and music. o]
Mindbody therapies such as relaxation, imagery, medita- Complementary and Alternative
tion, and biofeedback may be chosen to reduce body tension Therapies for the Nurse
and anxiety and promote sleep.31 Massage, reexology, and
Reiki, being touch therapies, can promote relaxation. Exercise Stress and burnout in oncology is well documented.124128
is an intervention that can help reduce anxiety and improve Stress and burnout are particularly relevant in oncology nurs-
quality of life in cancer patients.63,116 Music can promote relaxing, where nurses work closely with patients and families and
ation for sleep. bear witness to suffering and dying on a daily basis.
MSKCCs Integrative Medicine Service offers massage to
Complementary Therapies for Control of the nursing staff as well as reexology, meditation, and yoga
Peripheral Neuropathy classes to provide a program of care for nurses. MSKCC is
invested in their nurses and knows the great benet these ther-
Peripheral neuropathy is a common problem for cancer apies can offer them. Programs are offered in which nurses are
patients receiving certain chemotherapies and for those with taught Reiki, as well as very simplied versions of gentle upper
diabetes. It is a difcult problem to treat, and its severity and body massage and reexology, which they can integrate into
recovery can vary with each patient. It can be so severe that the their nursing practice after reviewing the indications and con-
oncologist may have to stop the chemotherapy. It may be traindications. These skills are a necessary part of any palliative
described by patients as numbness, tingling, or burning. Cis- care program.
o] Disease Control and Prevention, National Center for Health Sta-

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121. Bruera E, Sweeney C, Willey J, Palmer J, Strasser F, Strauch E. wellness in oncology nurses: Addressing burnout and social sup-
Perception of discomfort by relatives and nurses in unresponsive port in the workplace. Oncol Nurs Forum 2004;31:4754.
III
Psychosocial Support
o]
26o] Mary Ersek
The Meaning of Hope in the Dying

I have these three gremlins in my head. One of them is on one side saying, Jack, youre going to lick
thisdont worry. Another gremlin is on the other side saying, Jack, you dope, you know you
arent going to make it. And on the middle of this is this third little guy who has to make sense of
both of them and help me to keep going on with my life day after day. Sometimes, they get so loud I
cant think, but most of the time I keep them locked up, and when Im busy they dont bother me.
37-year-old-man with malignant melanoma1*
Every time life asks us to give up a desire, to change our direction or redene our goals; every time
we lose a friend, break a relationship, or start a new plan, we are invited to widen our perspectives
and to touch, under the supercial waves of our daily lives, the deeper currents of hope.
Henri Nouwen2
Key Points Hope has long been recognized as fundamental to the human
Hope is a key factor in coping with and nding meaning in the experience. Many authors have contemplated hope, extolling
experience of life-threatening illness. it as a virtue and an energy that brings life and joy.25 Fromm5
People facing life-threatening illness and their families do not called hope a psychic commitment to life and growth. (p. 12).
invariably lose hope; in fact, hope can increase at the end of life. Some authors assert that life without hope is impossible.3,6
Nurses can implement evidence-based practices to foster and Despite its positive connotations, hope is intimately bound
sustain hope for patients and families at the end of life. with loss and suffering.4,7 As the French philosopher Gabriel
Nurses need to understand and respect individual variations in Marcel4 observed, Hope is situated within the framework of
hope processes to provide sensitive, effective care to patients and the trial (p. 30). It is this paradox that manifests itself so fully
their families at the end of life. at the end of life.
Indeed, the critical role that hope plays in human life takes
on special meaning as death nears. The ability to hope often is
challenged, and it can elude patients and families during termi-
nal illness. Hope for a cure is almost certainly destroyed, and
even a prolonged reprieve from death is unlikely. Many patients
and families experience multiple losses as they continue an ill-
ness trajectory that is marked by increasing disability and pain.
Even when hope appears to be strong within the dying per-
son or the family, it can be problematic if hopefulness is per-
ceived to be based on unrealistic ideas about the future.8,9
Tension grows within relationships as people become absorbed
in a struggle between competing versions of reality. Important
issues may be left unresolved as individuals continue to deny
the reality of impending death.
Despite these somber realities and the inevitable suffering,
many people do maintain hope as they die, and families recover
and nd hope even within the experience of loss. How can this
be? Part of the reason lies in the nature of hope itselfits
resiliency and capacity to coexist with suffering. As witnesses to
suffering and hope, palliative care nurses must understand these
complexities and be condent and sensitive in their efforts to
address hope and hopelessness in the people for whom they care.
*From The Human Side of Cancer: Living with Hope, Coping with Uncer-
tainty by Jimmie Holland, M.D., and Sheldon Lewis.1 (Reprinted with per-
mission from HarperCollins Publishers, Inc.)
513
514 Psychosocial Support
To assist palliative care nurses, this chapter explores the qualitative studies have shown that spirituality and spiritual
many dimensions of hope and identies its possible inuence practices provide a context in which to dene hope and artic-
on health and quality of life. Nursing assessment and strategies ulate hope-fostering activities.11,14,16,23,29,36 These activities include
to foster hope are described. In addition, specific issues such religious beliefs and rituals but extend to broader conceptual-
as unrealistic hopefulness and cultural considerations in the izations of spirituality that encompass meaning and purpose
expression and maintenance of hope are discussed. The goals in life, self-transcendence, and connectedness with a deity or
of the chapter are to provide the reader with an understanding other life-force.33,37 Although spirituality is almost always
about this complex but vital phenomenon; to offer guidance viewed as a hope-fostering influence, serious illness and suf-
in the clinical application of this concept to palliative nursing fering can challenge ones belief and trust in a benevolent deity
care; and to explore some of the controversies about hope that or be viewed as punishment from God; either interpretation of
challenge clinicians. suffering can result in hopelessness.38
Relationships with signicant others are another important
dimension of hope. Interconnectedness with others is cited
o] as a source of hope in virtually every study, and physical and
Denitions and Dimensions of Hope psychological isolation from others is a frequent threat to
hope.11,31,39 Hope levels are positively associated with social
Hope is an important concept for many disciplines, including support.3941 In addition to family members and friends,
philosophy, theology, psychology, nursing, and medicine. patients also have identied nurses as having a signicant inu-
Many authors have attempted to dene hope and describe its ence on hope.42,43 Despite being vital sources of hope, other
attributes.1013 Some authors are more successful than others people can threaten a patients hope by distancing themselves
in capturing its complexity. A classic nursing theory of hope, from the patient, showing disrespect, discounting the patients
developed by Karin Dufault12,14 and based on qualitative research experiences, disclosing negative information, or withholding
involving elderly people with cancer, is particularly notable in information.12,36,44
its comprehensiveness and expansion of previous psychologi- The cognitive dimension of hope encompasses many intel-
cal models of hope.15 Dufault14 described hope as a multidi- lectual strategies, particularly those involving specic goals
mensional, dynamic life force characterized by a condent yet that require planning and effort to attain. Identifying goals can
uncertain expectation of achieving a future good which, to the motivate and energize people, thereby increasing hope.10,45
hoping person, is realistically possible and personally signi- When identifying goals, people assess what they desire and
cant (p. 380). Dufault also theorized that hope has two inter- value within a context of what is realistically possible. They
related spheres: particularized and generalized. Particularized appraise the resources necessary to accomplish their goals
hope is centered and dependent on specic, valued goals or against the resources that are available to them. They then take
hope objects. An example is the hope of a terminally ill patient action to secure the resources or meet the goals, and they
to live long enough to celebrate a particular holiday or event. decide on a reasonable time frame in which to accomplish
In contrast, generalized hope is a broader, nonspecic sense of the goals.10,12,45 Active involvement in ones situation and
a more positive future that is not directly related to a particular attainment of goals increases the sense of personal control and
goal or desire. Dufault likened this sphere to an umbrella that self-efcacy, which, in turn, increases hope.10,46 If a person
creates a diffuse, positive glow on life. repeatedly fails to attain valued goals, hopelessness and passiv-
Dufault postulated several dimensions of hope that were ity can result.10,45
incorporated into later research and theories.10,11,1618 These The behavioral, goal-focused thoughts and activities that
dimensions include affective, spiritual, relational, cognitive, foster hope are similar to the problem-focused coping strate-
behavioral, and contextual aspects of hope. The affective dimen- gies originally described by Lazarus and Folkman.47 This sim-
sion of hope encompasses a myriad of emotions. Of course, ilarity is not surprising, because hope is strongly associated
hope is accompanied by many positive feelings, including joy, with coping.20,39 The exact relationship between the two con-
condence, strength, and excitement. The full experience of cepts, however, is unclear. Hope has been identied as a foun-
hope, however, also includes uncertainty, fear, anger, suffer- dation or mediator for successful coping,20,48 a method of
ing, and, sometimes, despair.4,1924 The philosopher Gabriel coping,49 and an outcome of successful coping.39 Many strate-
Marcel, for example, argued that in its fullest sense hope gies that people use to maintain hope have been previously
could only follow an experience of suffering or trial.4 Marcels identied as coping methods, and models of maintaining
thesis is corroborated by the experiences described by people hope overlap substantially with models of coping.8,10,11,45 Strate-
with cancer who see their disease as a wake-up call that has gies to maintain hope include problem-focused coping meth-
opened their eyes to a greater appreciation for life and an ods (e.g., setting goals, actively managing symptoms, getting
opportunity for self-growthin other words, an event that ones affairs in order) and emotion-focused strategies (e.g.,
has forced them to confront their mortality while also inspir- using distraction techniques, appraising the illness in non-
ing hope.25,26 threatening ways).8,10,11
The spiritual dimension is a central component of hope.2733 Contextual dimensions of hope are the life circumstances
Hopefulness is associated with spiritual well-being,32,34,35 and and abilities that inuence hopefor example, physical health,
The Meaning of Hope in the Dying 515
nancial stability, and functional and cognitive abilities.30,48,5052 future orientation to hope. Younger children also saw adults as
Common threats to hope include acute, chronic, and terminal being in control of a situation and were less concerned about
illness; cognitive decline; fatigue; and impaired functional sta- assessing how realistic their particular hopes were. In contrast,
tus. These factors, particularly physical illness and impair- adults actively assessed the realities of the present and possi-
ment, do not inevitably decrease hope, if people are able to bilities for the future.
overcome the threat through cognitive, spiritual, relational, or Artinian68 explored hope in older children, aged 10 to
other strategies. 20 years, who underwent bone marrow transplantation. The
ndings suggested that ways to reduce stress and instill hope
among younger patients and their parents include managing
o] physical discomforts, making children and parents feel cared
Inuence of Hope and Hopelessness for, being nonjudgmental when children and parents vent anger,
on Adaptation to Illness preventing boredom, and assisting with making and altering
plans.
Hope inuences health and adaptation to illness. Empirical evi- A program of research by Hinds and colleagues elucidated
dence indicates that diminished hope is associated with poorer the experience of hoping in adolescents.13,42,44,69,70 These inves-
quality of life,53,54 increased severity of suicidal intent,50,54 and tigators conducted studies in well adolescents, adolescents
higher incidence of suicide.50,5456 Hopelessness also increases undergoing inpatient treatment for substance abuse, and ado-
the likelihood that people will consider physician-assisted sui- lescents with cancer. Based on qualitative studies, Hinds dened
cide as an option for themselves.5759 If hopelessness occurs, adolescent hopefulness as the degree to which an adolescent
anxiety and depression can result.51,53,60 Lower levels of hope possesses a comforting or life-sustaining, reality-based belief
also are associated with lower self-esteem.40,41,61 that a positive future exists for self and others13 (p. 85). Inter-
In addition to its inuence on psychological states and estingly, inclusion of the phrase and others arose from the
behaviors, there is some evidence to suggest that hope affects sample of adolescent cancer patients. Hinds found that only in
physical states as well. Researchers have found an association this sample did adolescents express a concern and articulate
between hope and immune function.62,63 Moreover, decreased their hopes for others. Examples of this attribute included
hope is associated with a worse prognosis in several patient such hopes as My parents will be O.K. if I die, and There will
populations.6466 be a cure soon so patient X will not die13 (p. 85). This ability
to go beyond oneself and hope for others may be inuenced by
the adolescents sense of mortality that accompanies the can-
o] cer diagnosis.13
Variations in Hope Among Different Populations Despite the stress of life-threatening illness, many adoles-
cents are able to remain hopeful. Ritchie61 examined hopeful-
The preceding description of hope is derived from studies ness and self-esteem in 45 adolescents with cancer. She found
involving diverse populations, including children, adolescents, that the average hopefulness and self-esteem scores for her
adults, and the elderly. In addition, research has been con- sample were as high as those for healthy adolescents. More-
ducted in inpatient, outpatient, and community settings with over, high self-esteem was an important predictor of hopeful-
well persons and those with a variety of chronic and life- ness. These results suggest that teens are able to respond to
threatening illnesses. The experiences of families also have serious illness with intact self-esteem and hope.
been described. Over these diverse populations and settings,
many core concepts have been identied that transcend spe- Hope and Older Adults
cic groups. However, some subtle but important differences
exist. For this reason, hopefulness in selected populations is Numerous studies have examined hope in ill and healthy older
addressed in the following sections. adults.12,17,30,35,66,71,72 Findings from these studies suggest that
certain hope-related themes and factors take on special signif-
Hope in Children and Adolescents icance for this age group. For example, religious beliefs and
spiritual well-being are strongly associated with hope in eld-
A few investigators have examined hope in pediatric popula- ers;35 these factors also were prominent themes in qualitative
tions. In an early study, Wright and Shontz67 studied hope studies.12,30,71 Common health-related factors, such as impaired
in children with chronic disabilities and significant adults in physical functioning, poor physical health, decreased mobility,
their lives (e.g., parents, teachers, physical therapists). Both fatigue, and cognitive impairment, are negatively associated
the children and the adults were interviewed, allowing for the with hope in older adults.30,52,71,73 Although chronic illness that
identication of differences between the two samples. The impairs physical functioning is linked with decreased hope,
investigators found that hope for the children in their study diagnosis of a life-threatening disease, such as cancer, is not
was two-dimensional. Hoping involved (1) an awareness of the associated with low levels of hope.74 This nding may reect
positive and (2) a sense of time orientation. For younger chil- an attitude among older adults that the quality of life that
dren, hope was present-focused, whereas older children had a remains matters more than the quantity.
Among younger European American adults, hope tends to

be tied to being productive; personal and professional achieve- Table 261
Sources of Hope/Hope-Fostering Strategies in Terminally
ments gure prominently in ones ability to nurture and main-
Ill Adults
tain hope. In contrast, older adults are more likely to focus on
spirituality, relationships, and other factors that are not linked Having one or more meaningful, shared relationships in
with accomplishment.71,75 Hope-fostering activities include which one feels a sense of being needed or being a part
reminiscing, participating in purposeful volunteer activities, of something
religious activities, and connecting with others. Maintaining a feeling of lightheartedness; feeling delight,
joy, or playfulness and communicating that feeling;
Hope from the Family Caregivers Perspective using humor
Recalling joyous, meaningful events
Family caregivers are an integral component in palliative care. Having ones individuality acknowledged, accepted, and
Patients and families inuence each others hope, and nursing honored; having ones worth afrmed by others
interventions must focus on both groups. Often, the physical Identifying positive personal attributes such as courage,
and psychological demands placed on family caregivers are determination, serenity
great, as are threats to hope.7678 Threats to hope in caregivers Having spiritual beliefs and engaging in spiritual practices
include isolation from support networks and from God; con- that provide a sense of meaning for their suffering
current losses, including loss of signicant others, health, and
Focusing attention and effort on the short-term future
income; and inability to control the patients symptoms. Care-
givers with poor health status, high fatigue, multiple losses, Thinking about and directing efforts at specic, short-term
attainable aims (earlier in terminal illness)
and sleep disturbances were signicantly less hopeful than care-
givers without these problems.78 Thinking about global, positive aims that are focused on
Yates and Stetz76 found that as awareness of dying increased, others (e.g., support for the bereaved, happiness for their
children) (later in terminal illness)
caregivers hoped for relief from suffering rather than for a cure.
Herth78 reported that as death became imminent, the need to Desiring serenity, inner peace, eternal rest (last days and
do for the patient was replaced by a wanting simply to be weeks of life)
with the patient. In addition, little emphasis was placed on the Source: Adapted from Herth (1990), reference 36.
future in caregivers descriptions of hope.78
Strategies to maintain hope in family caregivers are similar
to those found in patients, with a few differences. Spending
time with others in the support network was very important was signicantly associated with hopelessness.82 People also
for caregivers. In addition, being able to reprioritize demands adopt specic strategies to foster hope at the end of life.36,45,80,83
helped caregivers conserve much-needed energy. Caregivers Many of these approaches are summarized in Table 261.
also maintained hope through engaging in relaxing activities, Although hope tends to change in people with terminal ill-
such as listening to or playing music, gardening, or watching a ness, maintaining a delicate balance between acceptance of
sunset.78 death and hope for a cure often remains an important task up
until the time of death, even when people acknowledge that
cure is virtually impossible.45,80 The dying person also needs to
o] envision future moments of happiness, fulllment, and con-
Hope in Terminally Ill Patients: Is Hope nection. For example, Benzein and colleagues80 reported that
Compatible with Death? people with life-threatening illness needed to dream about
possibilities and situations even if the imagined events and goals
Research demonstrates that many people are able to maintain were unlikely to occur. As one of their participants related,80
hope during acute and chronic illness. Hope also can thrive
Sometimes I let myself imagine that Ill live until
during the terminal phase of an illness, despite the realization
Christmas and sometimes in the night I lie and think
that no cure is possible. In one study, the hope in terminally ill
about where to put the tree. I know its silly but it feels
patients and their caregivers actually increased over time as
good to think about myself sitting there by the tree
death neared.36,78
with everyone . . . a lovely picture (p. 122).
Although hope levels may not decrease, the nature of hope
often is altered through the dying process. Hope tends to be The rst quotation that appears at the beginning of this
dened more in terms of being rather than doing.43,79 Other chapter also captures the ways in which dying patients and
changes in hope at the end of life include an increased focus on their families must walk the tightrope between hope and despair.
relationships and trusting in others, as well as a desire to leave a As Wilkinson84 stated, people confronting the end of their lives
legacy and to be well remembered.12,80,81 Spirituality also in- must change their perspectives from dying from a terminal
creases in importance during the terminal phases of illness. In a illness to living with a life-threatening illness (p. 661) in order
study of 160 terminally ill patients, decreased spiritual well-being to maintain hope.
o] medical decision-making, two eminent values in American

Multicultural Views of Hope health care, are impossible without this disclosure.96 Although
few would advocate lying to patients, truth-telling is not uni-
Over the past three decades, understanding of the clinical phe- versally viewed as helpful or desirable. In some cultures, it is
nomenon of hope has increased dramatically through theoret- believed that patients should be protected from burdensome
ical discourse and empirical investigation. Although knowledge information that could threaten hope.97,98 Truthful, but blunt,
regarding the components, processes, and outcomes of hope communication may also be seen as rude and disrespectful in
has grown dramatically, progress in multicultural research on some cultures, and the feeling of being devalued and disre-
hope has been limited. The samples in many studies that exam- spected has a negative impact on hope.97,98 In addition to the
ine hope or hopelessness are ethnically homogeneous,16,39 or threats to hope that frank discussion is believed to engender,
their ethnic composition is unknown.10,80 The studies that do people who prefer nondisclosure of threatening information
include ethnically diverse samples are small,8587 precluding may be seen as attempting to cling to unrealistic hopes by
any comparisons or generalization of ndings. refusing to listen to discouraging facts about their condition.
Several excellent European studies have contributed greatly A third cultural concept that may affect hope is ones feel-
to the general understanding of hope.21,24,80,8892 However, many ing of being in control. As described earlier, control is a core
of these investigations use frameworks and instruments devel- attribute in many conceptualizations of hope. Although hope
oped by U.S. researchers whose work is founded on homoge- can be relinquished to others, including health care providers
neous samples. Moreover, it may be that hopefulness for or a transcendent power, personal control often is central to
Europeans is more similar to that of middle-class Americans the hoping process. In Euro-American cultures, applying ones
than it is different. will and energy to alter the course of an illness or to direct the
Some descriptive research using translations of instru- dying process seems natural and desirable. Advance directives
ments developed by American investigators has been conducted are one culturally sanctioned way in which members of these
in Korean and Taiwanese cancer patients.19,51,90,93,94 Although societies exert control over the dying process.99 However, this
findings from these studies generally are consistent with those desire for and belief in personal control is not a common fea-
conducted in the United States and Canada, discrete differ- ture in many other cultures. In cultures where death is viewed
ences may reect cultural dissimilarities. For example, Lin and as part of the inherent harmony of living and dying, attempts
associates93 hypothesized that cultural differences in physi- to exert any inuence over the dying process may seem unnat-
cians willingness to disclose a cancer diagnosis may have con- ural or inappropriate.100 People from diverse cultures who take
tributed to changes in hope levels in Taiwanese cancer patients. a more passive role in their health care or who do not espouse
Despite the growing body of research in diverse samples, a desire to control their illness or the dying process may be
existing research may not adequately reect the experience of viewed as less hopeful than people who manifest a ghting
hope for people from non-European cultures. Several known spirit and active stance.
cultural differences could certainly limit the applicability of More research needs to be conducted to test theories of
current conceptualizations of hope, especially within the pal- hope in multicultural groups, to ensure the appropriate appli-
liative care context. Three issues that theoretically could have cation of current conceptualizations to diverse cultural groups
a major impact on multicultural views of hope are time ori- and to develop new theories that are relevant for these groups.
entation, truth-telling, and ones beliefs about control. Until this work is done, palliative care clinicians must be cau-
Time orientation is identied as a cultural phenomenon tious in applying current hope theories and sensitive to the
that varies among cultural groups. Some cultural groups, par- possible variations in diverse populations.
ticularly those within the Euro-American culture, tend to be
future oriented. Within these groups, people prefer to look
ahead, make short- and long-term plans, and organize their o]
schedules to meet goals.95 Because hope is dened as being Models of Maintaining Hope for People
future-oriented, with hopeful people more likely to identify with Life-Threatening Illnesses
and take action to meet goals, members of these future-
oriented cultures may possibly appear more hopeful than peo- Several investigators have identied factors that foster hope
ple who are predominantly present-focused. On the other and strategies that enable people to sustain hope despite life-
hand, people who are more focused on the present may be bet- threatening or chronic illness.12,16,23,30,36,78,80,101103 Although there
ter able to sustain hope at the end of life, when the ability to is considerable concordance across these studies regarding
make long-range goals is hindered by the uncertainty sur- many of the major themes, various models emphasize differ-
rounding a terminal diagnosis. Additional research is needed ent styles and strategies that demonstrate the diversity in
to clarify these relationships. hope-fostering strategies.
The value for truth-telling in Western health care systems As described previously, many people with terminal illness
also may affect hope. Current ethical and legal standards turn to activities and coping strategies that cultivate general-
require full disclosure of all relevant health care information ized hope rather then an emphasis on achievement and con-
to patients.96 Informed consent and patient autonomy in trol. These strategies reect a sense of peace and acceptance of
Table 262
Structure of Keeping It In Its Place: Hope-Maintaining Strategies In People with Life-Threatening Illness
I. Appraising the illness in a V. Taking a stance toward the illness and treatment
nonthreatening manner A. Fighting the illness
A. Seeing the disease/treatment as a challenge or a test 1. Go down ghting
B. Seeing the disease/treatment as a positive inuence 2. Imagining the illness as the enemy or an evil being
1. Reprioritizing ones life B. Accepting the illness
2. Becoming altruistic 1. Its Gods will
3. Looking at the bright side 2. Its just part of the process
II. Managing the cognitions related to the 3. Expecting the disease/death
illness experience VI. Managing uncertainty
A. Joking about it A. Minimizing the uncertainty
B. Avoiding thinking or talking about the negative 1. Knowing the future
C. Keeping distracted 2. Having to believe
D. Forgetting about it B. Maximizing the uncertainty
E. Not dwelling on it 1. They (the physicians) could always be wrong
F. Focusing on loved ones 2. Im not a statistic!beating the odds
III. Managing the emotional response to the VII. Managing the focus on the future
illness experience A. Living day to day
A. Limiting the emotional response B. Focusing on long-term goals
B. Severing the cognitive from the emotional response 1. Making mutable goals
C. Shifting from one emotion to another 2. Establishing interim goals
D. Translating emotional pain into physical pain 3. Using previously met goals as a source of hope
IV. Managing the sense of control 4. Using unmet goals as a source of hope
A. Maintaining control VIII. Managing the view of the self in relation to the illness
1. Getting information/staying informed A. Minimizing the illness and the treatment
2. Restraining the disease through exercise, diet, and 1. It (the disease) is just a aw in my system
stress management 2. It (the therapy) is just a temporary
3. Decisional controlmaking decisions inconvenience
about treatment or other aspects of life to B. Maximizing personal strength
exert control 1. Identifying personal attributes of strength
B. Relinquishing control 2. Making downward comparisons with others
1. To a deity (e.g., At least I dont have AIDS)
2. To the medical and nursing staffs 3. Focusing on successful others
3. To medical science 4. Identifying a history of personal strength
Source: Adapted from Ersek (1991), reference 25, and Ersek (1992), reference 16, with permission.
death and center on being rather than doing. These strate- dened as the process of confronting the negative possibilities
gies are described in Table 261. inherent in the illness experience, including death, and allowing
In contrast, some models focus more on active, goal- the full range of thoughts, behaviors, and emotions resulting
oriented or problem-solving strategies.16,25,45 This author16,25 from the recognition. Keeping It in Its Place is dened as the
found that adults with leukemia undergoing bone marrow process of managing the impact of the disease and its treat-
transplantation maintained hope by using many active, cog- ment by controlling ones response to the disease, prognosis,
nitive strategies to minimize the psychological distress of life- and therapy (Table 262). This model underscores the com-
threatening disease. The resulting model emphasizes that plex and sometimes contradictory nature of sustaining hope
maintaining hope requires a dynamic interplay, or dialectic, through serious illness. People use multiple strategies that
between two categories of hope-sustaining strategies: Dealing allow them to confront and to avoid the negative aspects of ill-
with It and Keeping It in Its Place. Dealing with It is ness and death. Although the strategies used to manage the
threat of death often seem to predominate, these activities Shelley Taylor and colleagues developed this idea further in
occur within a background of recognition and acknowledg- their theory of positive illusions, which is based on an exten-
ment of the possibility of death. This process of negotiating sive program of research spanning more than two decades.105108
between acknowledgment and management of these fears has They describe positive illusions as general, enduring cognitive
been identied in other studies of people with life-threatening patterns, involving error and/or bias, that provide a founda-
illnesses.21,46,104 tion for successful adaptation to many threatening events,
Gum and Snyder45 elaborated a model of hoping that empha- including serious illness. Especially important are unrealisti-
sizes the need for people to set goals and take action to achieve cally positive evaluations of the self, exaggerated perceptions
them. Although some people continue to search for a cure of control, and unrealistic optimism about the future.109
after receiving a terminal diagnosis, most people eventually They support their theory with empirical evidence that
accept their prognosis and mourn the loss of their original denial and positive illusions often are associated with posi-
goals. At this point, they need to develop and pursue alternative outcomes, such as better psychological adjustment to ill-
tive goals that are possible in light of their diminished physical ness, less physical and emotional distress, and even decreased
function, end-of-life symptoms, and loss of energy. mortality.46,107,108,110,111
These different approaches for maintaining hope are In addition to promoting positive outcomes, unrealistic
important to describe and understand because they assist the hopes need to be assessed within the context of uncertainty.
palliative care nurse in designing effective strategies to foster No one really does know exactly what the future will bring. So,
hope. They increase clinicians awareness regarding the vari- if a person hopes for something in the future that appears
ous ways that people respond to chronic and terminal illness highly unlikely, can it be known for certain that it will not
and guide clinicians in their interactions with patients and occur? Sometimes, patients and families need to focus on this
families to sustain hope. They also help palliative care providers uncertainty to sustain hope.
understand difcult or troubling responses, such as unrealistic Another frequent cause of concern is the way in which peo-
hopefulness. ple exploit uncertainty to maximize hope. For instance, people
frequently respond to dire prognostic news with observation
that they can always beat the odds. Given the fact that no one
o] can predict the future with absolute certainty, it is impossible
The Issue of Unrealistic Hopefulness to predict which individuals with a 2% chance of remission or
recovery will actually be cured. Also, consider the case of a per-
Reality surveillance is a feature of many conceptualizations of son with life-threatening disease who believes that God can
hope. Often, clinicians, researchers, and theorists believe that provide a cure. Spontaneous miracle cures, however rare, have
mentally healthy people should choose and work toward real- been documented. No one can predict with complete con-
istic goals. In these frameworks, adhering to unrealistic hopes dence that there is no possibility of a cure. These observations
or denying reality is a sign of maladaptive cognitions that raise the question: do all people who hope against poor odds
could lead to negative health outcomes. Therefore, denial and need help to become more realistic?
unrealistic hopes and ideas are discouraged and treated as A third argument against aggressive reality orientation
pathological.8,9 for all patients and families is the evidence that unrealistic
Clinical examples of unrealistic hopes that cause conster- hopes and illusions often are abandoned over time and with-
nation are numerous and diverse. For instance, one patient out intensive intervention from professionals.12,107,109 In other
with advanced cancer might hope that his persistent, severe words, most people acknowledge and accept distressing infor-
sciatica is from exercise and overuse rather than spinal metas- mation, but need to do so on their own schedules.
tases. The nurse working with this patient may continually The preceding discussion may seem to imply that clinicians
contradict his theory, asserting that his denial of the probable, should not be concerned about unrealistic hopefulness. Of
malignant cause of the pain will delay effective treatment. course, that is not the case. Despite their adaptive potential,
Another patient might insist that a new cure for her illness is illusions and denial may result in adverse outcomes. For exam-
imminent, causing distress for the nurse who knows that it is ple, unrealistic hopes may lead parents to insist on aggressive,
unlikely that a cure will be found and who believes that the futile therapy that increases their childs suffering without
patients unrealistic hopes will hinder acceptance of and prepa- curing or controlling the disease. Similarly, a person who
ration for death. denies that his illness is terminal may isolate himself from
Despite these concerns, however, some investigators argue his family to protect his beliefs and avoid contradictory
that the nurses fears may be unfounded. This perspective is opinions. Unfortunately, in these cases and others, there is
based on ndings from studies, conducted over the past few insufcient research to inform clinicians fully regarding situ-
decades, which have led social psychologists to question the ations that are potentially maladaptive, and even less guidance
view that denial and unrealistic hopes are always maladaptive. about appropriate therapeutic strategies. However, evidence
Instead, these researchers argue that human interpretation of exists that some situations should be viewed with caution and
information from the environment is inherently biased and may indicate a need for gentle interventions, such as offering
inaccurate.9,45,46 alternative hopes or providing skillful counseling. Table 263
taking actions to achieve goals, sense of control over ones sit-

Table 263 uation, and identifying hope-inspiring factors in ones past,
Assessing Unrealistic Hopes
present, and future. In Table 264, this framework has been
1. Is the focus of the unrealistic hope broad or severe (e.g., adapted and applied to terminally ill patients. It includes exam-
complete denial of a disease that has been documented)? ples of questions and probes that can be used to assess hope.
2. Is the persistence of the unrealistic hope severe, i.e., does it Like pain, hope is a subjective experience and assessment
persist despite multiple pieces of information from should focus on self-report. However, behavioral cues can also
multiple sources (e.g., family, physicians, nurses) that the provide information regarding a persons state of hope or
hope is unlikely to be realized? hopelessness. Hopelessness is a central feature of depression;
3. Is the persons adherence to the unrealistic hope complete, therefore, behaviors such as social withdrawal, at affect, alco-
or does the person admit at times that there are limitations hol and substance abuse, insomnia, and passivity may indicate
and acknowledge negative possibilities? Does the person hopelessness.
continually use words such as knowing what will As discussed earlier, the patients terminal illness affects
happen, rather than acknowledging that what he or she the hope of family caregivers, who, in turn, inuence the hope
hopes for might not occur? of the patients. Therefore, the hope of the patients family
4. Does the hope cause the person to engage in caregivers and other signicant support people also should be
reckless behaviors? assessed.
5. Does the hope cause the person to ignore warning Over the past decades, researchers from several disciplines
signs (e.g., angina, increased pain) that should be have developed instruments to measure hope and hopeless-
treated promptly? ness. The theoretical and empirical literature documents the
6. Does the hope cause great distress for family members and comprehensiveness and face validity of these tools. Advances in
signicant others? psychometric theory and methods have allowed the evaluation
7. Has the person become isolated from others, either to of multiple dimensions of validity and reliability. The develop-
avoid their challenges to the unrealistic hope or because ment and use of well-designed and well-tested tools has con-
others are uncomfortable in responding to the person? tributed greatly to the science of hope. Although a thorough
8. Does it appear that adhering to the hope actually is causing discussion of these measures is beyond the scope of this chap-
distress and anxiety for the person (who may tacitly doubt ter, Table 265 provides a brief description of several widely
or disbelieve in the illusion or hope, but is afraid to discuss used and tested instruments. More complete descriptions and
that possibility with others)? evaluations of these scales can be found elsewhere.11,112
9. Is death imminent, and the unrealistic hopefulness is
hindering efforts to get affairs in order, say good-bye, or
receive emotional support? o]
Nursing Interventions to Maintain
Hope at End of Life
lists several questions regarding unrealistic hopes. If the
answer to any of these question is Yes, then further assess- Clinicians, theorists, and researchers recognize that nurses
ment and possible intervention may be necessary. play an important role in instilling, maintaining, and restoring
hope in people for whom they care. Researchers have identi-
ed many ways in which nurses assist patients and families to
o] sustain hope in the face of life-threatening illness,44,87,102,113,114
Assessing Hope Table 266 provides a summary of nursing approaches to
instill hope. A brief perusal of this table reveals an important
As in all nursing care, thorough assessment of physical and point about these strategies: For the most part, nursing care to
psychosocial factors must precede thoughtful planning and maintain patients and families hope fundamentally is about
implementation of therapeutic strategies. Therefore, consis- providing excellent physical, psychosocial, and spiritual pallia-
tent and comprehensive evaluations of hope should be included tive care. There are few unique interventions to maintain
in the palliative nursing assessment. Some conceptual ele- hope, and yet there is much nurses can do. Because hope is
ments of hope, such as those focusing on meaning and purpose inextricably connected to virtually all facets of the illness
in life, are included in a spiritual assessment. Rarely, however, experienceincluding physical pain, coping, anxiety, and
are comprehensive guides to assessing hope included in stan- spiritualityimprovement or deterioration in one area has
dardized nursing assessment forms. repercussions in other areas. Attending to these relationships
The guidelines produced by Farran, Wilken, and Popo- reminds clinicians that virtually every action they take can
vich131 for the clinical assessment of hope appropriately use inuence hope, negatively or positively.
the acronym HOPE to designate the major areas of evaluation: Another vital observation about hope-inspiring strategies
The areas are Health, Others, Purpose in Life, and Engaging is that many approaches begin with the patient and family. The
Process. The term engaging process refers to identifying goals, experience of hope is a personal one, dened and determined
Table 264
Guidelines for the Clinical Assessment of Hope in Palliative Care
Interview Question/Probe Rationale
Health (and Symptom Management)

1. Tell me about your illness. What is your Explore the persons perceptions of
understanding of the probable course of the seriousness of the illness and
your illness? possible trajectories.
2. How hopeful are you right now, and how Determine the persons general sense
does your illness affect your sense of hope? of hope and the effect of the terminal
illness on hope.
3. How well are you able to control the Uncontrolled end-of-life symptoms
symptoms of your illness? How do these have been found to negatively
symptoms affect your hope? inuence hope.36, 78
Others
1. Who provides you with emotional, Identify people in the environment
physical, and spiritual support? who provide support and
enhance hope.
2. Who are you most likely to conde in Identify others in whom the person
when you have a problem or a concern? has trust.
3. What kinds of difcult experiences have Explore experiences of coping with
you and your family/partner/support stressful situations.
network had to deal with in the past? How
did you manage those experiences?
4. What kinds of things do family, support Identify specic behaviors that
people, health care providers do that make affect hope. Recognize that other
you more hopeful? Less hopeful? people can also decrease hope.
Purpose in Life
1. What gives you hope? Identify relationships, beliefs, and
activities that provide a sense of
purpose and contribute positively
to hope.
2. What helps you make sense of your Identify the ways in which the person
situation right now? makes meaning of difcult situations.
3. Do you have spiritual or religious practices or Identify if and how spirituality
support people that help you? If yes, acts as a source of hope.
what are these practices / people?
4. Has your illness caused you to question Terminal illness can threaten ones
your spiritual beliefs? If yes, how? basic beliefs, and test ones faith.
5. How can we help you maintain these Identify ways in which clinicians and
practices and personal connections with others can support spiritual practices
spiritual support people? that enhance hope.
Goals
1. Right now, what are your major goals? Identify major goals and priorities.
Examine whether these goals are
congruent with the views of others.
2. What do you see are the chances that you Explore how realistic the person
will meet these goals? thinks the goals are; if the goals are
not perceived as being attainable,
assess the impact on hope.
(continued )
Table 264
Guidelines for the Clinical Assessment of Hope in Palliative Care (continued )
Interview Question/Probe Rationale
3. What actions can you take to meet Identify specic actions the person
these goals? can take to meet the goals.
4. What actions have you already taken to Identify how active the person has
meet these goals? been in attaining the goals.
5. What resources do you have for meeting Determine other resources to which
these goals? the person has access for the purpose
of attaining goals.
Sense of Control
1. Do you feel that you have much control Determine whether the person feels
over your current situation? any ability to control or change the
situation. Explore whether the person
wants to have more control.
2. Are there others who you feel have some Determine whether the person feels as
control over your current situation? If though trusted others (e.g., health
yes, who are they and in what ways do care providers, family, deity) can
they have control? control or change the situation.
Sources of Hope over Time

1. In the past, what or who has made Identify sources of hope from the
you hopeful? persons past that may continue
to provide hope during the
terminal phase.
2. Right now who and what provides you Identify current sources of hope.
with hope?
3. What do you hope for in the future? Assess generalized and specic hopes
for the future.
Source: Adapted from Farran et al. (1992), reference 131, and Farran et al. (1995), reference 11.
by the hoping person. Although others greatly inuence that death, in that hope-restoring and -maintaining strategies must
experience, ultimately the meanings and effects of words and be an integral part of bereavement counseling.115
actions are determined by the person experiencing hope or
hopelessness. Many approaches used by people with life- Specic Interventions
threatening illness to maintain hope are strategies initiated
with little inuence from others. For example, some people The framework for the following discussion is adapted from
pray; others distract themselves with television watching, con- Farran, Herth, and Popovich,11 who articulated four central
versation, or other activities; and many patients use cognitive attributes of hope: experiential, spiritual/transcendent, rela-
strategies, such as minimizing negative thoughts, identifying tional, and rational thought. These areas encompass the major
personal strengths, and focusing on the positive.16 For many themes found in the literature, and although they are not
patients and families, careful observation and active support mutually exclusive, they provide a useful organizing device.
of an individuals established strategies to maintain hope will This section also includes a brief discussion of ways in which
be most successful. nurses need to explore and understand their own hopes and
A nal point is to remind the reader that family caregivers values in order to provide palliative care that fosters hope in
and other support people should be included in these others.
approaches. Ample evidence exists that patients and people
within their support systems reciprocally inuence one anothers Experiential Process Interventions
hope. In addition, family and signicant others are always
incorporated into the palliative care plan and considered part The experiential process of hope involves the acknowledg-
of the unit of care. Maintenance of hope also is a goal after ment and acceptance of suffering, while at the same time using
Table 265
Descriptions of Selected Instruments to Measure Hope and Hopelessness
Instrument Name Brief Description Selected References

Beck Hopelessness Scale 20-item, true-false format 50, 55, 56, 82, 121,122
Based on Stotlands denition of hopelessness:
system of negative expectancies concerning oneself
and ones future
Developed to assess psychopathological levels of
hopelessness; correlates highly with attempted and
actual suicide
Herth Hope Index 12-item, 4-point Likert scale; total score is sum of 18, 19, 28, 36, 39, 51, 53,
all items; range of scores 1248 78, 88, 123, 124
Designed for well and ill populations
Assesses three overlapping dimensions:
(1) cognitivetemporal, (2) affectivebehavioral,
(3) afliativebehavioral
Spanish, Thai, Chinese, Swedish
translations available
Hopefulness Scale for 24-item visual analog scale 61, 70, 125, 126
Adolescents (Hinds) Assesses the degree of the adolescents positive
future orientation
Assesses only the relational and rational
thoughts processes of hope
Tested in several populations of adolescents:
well, substance abusers, adolescents with emotional
and mental problems, cancer patients
Miller Hope Scale 40-item scale, 5-point Likert scale 35, 127, 128
Assesses 10 elements: (a) mutuality/afliation,
(b) avoidance of absolutizing, (c) sense of the possible,
(d) psychological well-being and coping, (e) achieving goals,
(f ) purpose and meaning in life, (g) reality surveillanceoptimism,
(h) mental and physical activation, (i) anticipation, ( j) freedom
Chinese and Swedish versions
Snyder Hope Scale 12-item, 4-point Likert scale 129, 130
Based on Stotlands denition of hope; focus is on
goals identication and achievement
Tested in healthy adults and adults with psychiatric illness
Also has developed tool to measure hope in children
the imagination to move beyond the suffering and nd hope.87 strategy to achieve this temporary suspension is through
Included in these types of strategies are methods to decrease humor. Several studies and lay publications have identied the
physical suffering and cognitive strategies aimed at managing central place of humor and lightheartedness in promoting
the threat of the terminal illness. hope.16,44,83,116 According to patients views, humor helps put
Uncontrolled symptoms, such as pain, fatigue, dyspnea, things in perspective and frees the self, at least momentarily,
and anxiety, cause suffering and challenge the hopefulness of from the onerous burden of illness and suffering. Making light
patients and caregivers. Timely and adept symptom preven- of a grim situation brings a sense of control over ones response
tion and management is central to maintaining hope. In home to the situation, even when one has little inuence over it. In
care settings, teaching patients and families the knowledge and one study, a respondent noted, I may not have much control
skills to manage symptoms condently and competently also over the nearness of death, but I do have the power to joke
is essential. about it36 (p. 1255). Of course, the use of humor with patients
Other ways to help people nd hope in suffering is to provide and families requires sensitivity as well as a sense of timing.
them a cognitive reprieve from their situation. One powerful Otherwise, humor becomes a belittling and hope-destroying
Table 266
Interventions to Foster Hope
Experiential Processes
Prevent and manage end-of-life symptoms
Use lightheartedness and humor appropriately
Encourage the patient and family to transcend their current situation
Encourage aesthetic experiences
Encourage engagement in creative and joyous endeavors
Suggest literature, movies, and art that are uplifting and highlight the joy in life
Encourage reminiscing
Assist patient and family to focus on present and past joys
Share positive, hope-inspiring stories
Support patient and family in positive self-talk
Spiritual/Transcendent Processes
Facilitate participation in religious rituals and spiritual practices
Make necessary referrals to clergy and other spiritual support people
Assist the patient and family in nding meaning in the current situation
Assist the patient/family to keep a journal
Suggest literature, movies, and art that explore the meaning of suffering
Relational Processes
Minimize patient and family isolation
Establish and maintain an open relationship
Afrm patients and families sense of self-worth
Recognize and reinforce the reciprocal nature of hopefulness between patient and
support system
Provide time for relationships (especially important in institutional settings)
Foster attachment ideation by assisting the patient to identify signicant others and then to
reect on personal characteristics and experiences that endear the signicant other to
the patient.118
Communicate ones own sense of hopefulness
Rational Thought Processes
Assist patient and family to establish, obtain, and revise goals without imposing ones
own agenda
Assist in identifying available and needed resources to meet goals
Assist in procuring needed resources; assist with breaking larger goals into smaller steps to
increase feelings of success
Provide accurate information regarding patients condition and treatment
Facilitate reality surveillance as appropriate
Help patient and family identify past successes
Increase patients and families sense of control when possible
mistake. The nurse should take cues from the patient and Other ways to move people cognitively beyond their suffer-
family, observe how they use humor to dispel stress, and let ing is to assist them in identifying and enjoying that which is
them take the lead in joking about threatening information joyful in life. Engagement in aesthetic experiences, such as
and events. In general, humor should be focused on oneself or watching movies or listening to music that is uplifting, can
on events outside the immediate concerns of the patient and enable people to transcend their suffering. Sharing ones own
family. hope-inspiring stories also can help.
Another strategy is to support people in their own positive involved. It is important to help others realize how vital they
self-talk. As noted earlier, many people naturally cope with are in sustaining a persons hope.
stress by comparing themselves with people they perceive to Miller118 recommended that another method of instilling
be less fortunate or by identifying attributes of personal hope is to foster attachment ideation. Attachment ideation is
strength that help them nd hope.16,117 For example, an elderly, the preoccupation with signicant others, such as a child or
married woman with advanced breast cancer may comment spouse. To encourage this attachment, a nurse assists a person
that, despite the seriousness of her disease, she feels luckier in identifying and reviewing characteristics that endear and
than another woman with the same disease who is younger attract the person to the signicant other. In this way, the per-
or without social support. By comparing herself with less son can focus on the loved one during times of distress or
fortunate others, she can take solace in recognizing that things pain, thereby maintaining hope.
could be worse. Similarly, a person can maintain hope by
focusing on particular talents or previous accomplishments Rational Thought Process Interventions
that indicate an ability to cope with illness. In one study on
hope, a woman asserted that her ability to survive an abusive The rational thought process is the dimension of hope that
marriage provided evidence that she could also cope with specically focuses on goals, resources, personal control and
and manage her illness and treatment.25 People may also cite self-efcacy, and action. Interventions related to this dimension
their high level of motivation as a reason to feel hopeful about include assisting patients and families in devising and attain-
the future. Acknowledgment and validation of these attrib- ing goals. Providing accurate and timely information about
utes supports hope and affirms self-worth for patients and the patients condition and treatment helps patients and fami-
families. lies decide which goals are achievable. At times, gentle assis-
tance with monitoring and acknowledging negative possibilities
Spiritual Process Interventions helps the patient and family to choose realistic goals. Helping
to identify and procure the resources necessary to meet goals
Several specic strategies can foster hope while incorporating also is important.
spirituality. These strategies include providing opportunities Often, major goals need to be broken into smaller, shorter-
for the expression of spiritual beliefs and arranging for involve- term achievements. For example, a patient with painful,
ment in religious rituals and spiritual practices. metastatic lung cancer might want to attend a family event that
Assisting patients and families to explore and make mean- is 2 weeks away. The successful achievement of this goal depends
ing of their trials and suffering is another useful approach. on many factors, including adequate pain control, transporta-
Encouraging patients and families to keep a journal of thoughts tion, and ability to transfer to and from a wheelchair. By
and feelings can help people in this process. Suggesting books, breaking the larger goal into several smaller ones, the person is
films, or art that focuses on religious or existential understandable to identify all the necessary steps and resources. Attain-
ing and transcendence of suffering is another effective way to ment of a subgoal, such as being able to transfer with minimal
help people make sense of illness and death. assistance, can empower patients and families and help ener-
Palliative care nurses also should assess for signs of spiritual gize them to reach more difcult and complex goals.
distress and make appropriate referrals to clergy and other Supporting patients and families to identify those areas of
professionals with expertise in counseling during spiritual and life and death in which they do have real inuence can increase
existential crises. Other spiritual and existential strategies are self-esteem and self-efcacy, thereby instilling hope. It also
described in chapters 30, 31 and 32 of this text. helps to review their previous successes in attaining important
goals.
Relational Process Interventions
Programs to Enhance Hopefulness
To maximize hope, nurses should establish and maintain an
open relationship with patients and members of their support In addition to discrete actions that individual nurses take to
network, taking the time to learn what their priorities and foster hope, several investigators have developed and tested
needs are and then addressing those needs in timely, effective programs to enhance hope in people with life-threatening ill-
ways. Demonstrating respect and interest, and being available ness. Rusten and colleagues91 designed a theoretically based
to listen and be with peoplethat is, afrming each persons group intervention to increase hope in people with cancer.
worthare essential. The eight weekly meetings each lasted 2 hours. After an initial
Fostering and sustaining connectedness among the patient, introductory session, the subsequent seven sessions focused
family, and friends can be accomplished by providing time for on a major topic such as believing in oneself, relationships,
uninterrupted interactions, which is especially important in active involvement, and spiritual beliefs and values. In a ran-
institutional settings. Nurses can increase hope by enlisting domized trial, Rusten and coworkers92 compared the effects
help from others to help achieve goals. For example, recruiting of their hope intervention with those of a group self-help/
friends or arranging for a volunteer to transport an ill person to education intervention and a control group. They reported
purchase a gift for a grandchild can cultivate hope for everyone that, 1 to 2 weeks after the interventions, participants in the
hope group showed signicantly increased hope scores com- o]

pared with the other two groups. At the 6-month follow-up, Summary
however, these differences were no longer signicant.
Herth87,102 also designed and tested a Hope Intervention Hope is central to the human experience of living and dying,
Program, which she evaluated in a group of people with recur- and it is integrally entwined with spiritual and psychosocial
rent cancer. Based on her empirically derived theory of hope, well-being. Although terminal illness can challenge and even
the intervention consists of eight sessions delivered in a nurse- temporarily diminish hope, the dying process does not
facilitated group setting. Six sessions focus on strategies that inevitably bring despair. The human spirit, manifesting its cre-
specically address the four hope processes: experiential, rela- ativity and resiliency, can forge new and deeper hopes at the
tional, spiritual/transcendent, and rational thought. During end of life. Palliative care nurses play important roles in sup-
the nal session, participants develop an individual plan with porting patients and families with this process by providing
strategies to maintain and foster hope. When Herth tested this expert physical, psychosocial, and spiritual care. Sensitive, skill-
intervention, she found signicantly increased hope levels in ful attention to maintaining hope can enhance quality of life
the treatment group compared with two control groups. These and contribute signicantly to a good death as dened by the
signicant differences persisted at the 3-, 6-, and 9-month patient and family. Fostering hope is a primary means by which
follow-up measurements.102 palliative care nurses accompany patients and families on the
Hinds and colleagues developed a Psychosocial Research journey through terminal illness.
Translation Team to integrate evidence-based hope interven-
tion guidelines into the cancer care department at St. Jude
Childrens Hospital.119 Using this innovative approach, the references
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27o] Inge B. Corless
Bereavement
What is it like to know you are dying? I will tell you. I just want to gojust to go out in a ash like a
light. This knowing that the end is coming and of all I will leave behind is killing me. How do you
say goodbye, let go?A patient
Key Points On June 9, 2004, a faculty member died after a valiant battle to
Bereavement is the state of having lost a signicant other. live. She had been aficted with a type of cancer for which she
Loss is a generic term indicating the absence of a current or future received a bone marrow transplant. The transplant failed, and
possession or relationship. this gifted academician died leaving a bereft husband and ve
Grief is the emotional response to loss. children, three of whom were triplets. On the same day, a
Mourning encompasses the death rituals engaged in by young girl died. She was the daughter of a faculty member at
the bereaved. the same academic program. The faculty member chose not to
divulge the slow decline of her lovely 19-year-old daughter,
thereby encapsulating the group to which she needed to reveal
her sad news. The faculty was devastated to have encountered
death in the rst person among their ranks, wanting to offer
support and condolences to the immediate familywhich
they didand also confronting their own grief. Faculty mem-
bers walked around their school in a daze grieving for their
losses. They were the walking wounded.
Bereavement takes many forms. It is inuenced rst and
foremost by culture. In Victorian times, bereaved women in
the northeastern United States wore black for a year and used
black-edged stationery, while men wore a black armband for
a matter of days before resuming their regular activities.
Bereavement is also inuenced by religious practice, the nature
of the relationship with the deceased, the age of the deceased,
and the manner of death. In this chapter, the impacts of
social and cultural forces on the form of bereavement are
examined.
Changes have occurred in what is considered appropriate
to the expression of grief. The wearing of black by a widow
(widows weeds) for the remainder of her life and the
presumption that grief will be resolved within a year are no
longer societal expectations. There are other expectations, how-
ever, that color the expressions of bereavement, loss, mourn-
ing, and grief. Given that greater emphasis is given to the
discussion of bereavement and grief, it behooves us to dene
these terms and examine their related elements.
531
o] 3. The meaning of the loss is determined primarily by

A Matter of Denition the individual sustaining it.
This suggests that it is wiser not to make assumptions about
Bereavement loss but to query further as to its meaning to the individual.
With the pronouncement of death, those who have the closest
blood or legal connections to the deceased are considered Mourning
bereaved. Stated simply, bereavement is dened as the state of
having experienced the death of a signicant other.1 Bereave- Mourning has been described in various ways. Kagawa-Singer3
ment confers a special status on the individual, entailing both described mourning as the social customs and cultural
obligations and special rights. The obligations concern dispo- practices that follow a death. This definition highlights the
sition of the body and any attendant ceremonies, as well as dis- external manifestations of the process of separation from the
posal of the worldly goods of the deceased, unless indicated deceased and the ultimate reintegration of the bereaved into
otherwise in a legal document such as a last will and testa- the family and, to varying degrees, society. Durkheim,4 one of
ment. The rights include dispensation from worldly activities the founders of sociology, stated that mourning is not a natu-
such as work and, to a lesser degree, family roles for a variable ral movement of private feelings wounded by a cruel loss; it is
period of time. Before an expanded discussion of bereave- a duty imposed by the group (p. 443). This duty is participa-
ment is undertaken, it is important to distinguish the concept tion in the customary rituals appropriate to membership in a
of bereavement from related terms as loss, mourning, and given group. Participation in such rituals has meaning for the
grief. mourner and group.5 These rituals and behaviors acknowl-
edge that a loss has occurred for the individual and the group,
and that the individual and the group are adjusting their rela-
Loss tionships so as to move forward without the presence of the
deceased individual.
Loss is a generic term that signies absence of an object, posi- DeSpelder and Strickland6 highlighted two important aspects
tion, ability, or attribute. More recently it also has been applied of mourning. They stated that mourning is the process of
to the death of an animal or person. Absence or loss of the incorporating the experience of loss into our ongoing lives
same phenomenon has different implications, depending and also the outward acknowledgment of loss (p. 207). That
on the strength of the relationship to the owner. For example, outward acknowledgment consists of participation in various
loss of a dog with which there was an indifferent relationship death and bereavement rituals. As noted, these vary by reli-
results in less emotional disruption for the owner than the loss gious and cultural traditions as well as by personal prefer-
of a dog that was cherished. The term is often applied to the ences. Martinson7 described the variation in practices in
death of an individual, and it is the bereaved person who is eastern Asia due to the inuences of folk practices, Confucian-
considered to have experienced a loss. Robinson and McKenna2 ism, Buddhism, and Christianity.
noted three critical attributes of loss: Whereas ancestor worship is important to varying degrees
1. Loss signies that someone or something one has in Asia, Latin cultures believe in the interdependence between
had, or ought to have had in the future, has been life and death, a belief that reects the value that is placed on
taken away. the continuity of relationships between the living and the dead.8
2. That which is taken away must have been valued by This relationship is considered sacred and is expressed openly
the person experiencing the loss. in some of the ritual practices dedicated to the dead.8,9 These
3. The meaning of loss is determined individually, practices have many functions, including signifying respect for
subjectively, and contextually by the person experi- the deceased and providing a mechanism for the expression of
encing it. feelings by the bereaved.
As is evident from the example of the loss of a dog, the indi-

vidual determination of meaning indicates that the second Grief
attribute suggested by Robinson and McKenna, namely that
Grief has been dened as a persons emotional response to the
what was lost was valued, is not necessarily congruent with the
event of loss,5 as the state of mental and physical pain that is
third attribute, which indicates individual evaluation, and is in
experienced when the loss of a signicant object, person, or
fact superuous. A loss occurs and its meaning is determined
part of the self is realized,6 and as the highly personal and
by the person who sustained the loss. The attributes of loss can
subjective set of responses that an individual makes to a real,
be reformulated as follows:
perceived, or anticipated loss.10 There are numerous deni-
1. Loss signies the absence of a possession or future tions of grief, and these are only illustrative of variations on a
possession. theme. The process of grief has been studied and reformu-
2. Each loss is valued differently and ranges from no lated, phases identied, types proposed (anticipatory, compli-
or little value to great value. cated, disenfranchised), and expressions of grief described.
Bereavement 533
Given that nurses work largely with individuals and fami- alcohol abuse, poor coping skills, history of mental illness, and
lies but in some cases also with communities, several sections patient is a child.18
of this chapter focus on grief as it relates to these different Bereavement-related grief was conceptualized by Rubin
entities. However, even in those sections that putatively deal and Schecter19 into two pathways: a dimension concerned
with associated topics, the subject of grief is related and may with how the bereaved individual functions following loss
be interwoven. With these preliminary denitions as a basis, and a dimension concerned with the nature of that individuals
bereavement, grief, and mourning can now be addressed in relational bond to the deceased. They observed further that
greater depth. loss involves disruption of multiple spheres of the individuals
life. The two-track model of bereavement was developed as a
means of understanding and addressing the bereavement pro-
o] cess and its outcome: Track I focuses on the physiological,
The Process of Bereavement somatic, affective, cognitive, social and behavioral factors that
are affected by lossand Track II examines ways of trans-
The process and meaning of bereavement vary depending on a forming the bereaveds attachment to the deceased and estab-
number of factors, including age, gender, ethnicity, cultural lishing new forms of ongoing relationship to the memories of
background, education, and socioeconomic status. For African that person.19,20 In essence, bereavement involves adjusting to
American widows, story-telling was the means by which the a world without the physical, psychological, and social pres-
bereavement experience was described.11 The themes identi- ence of the deceased.
ed in a study of these widows included awareness of death, Although Bernard and Guarnaccia21 found differences
caregiving, getting through, moving on, changing feelings, and between husbands and daughters of breast cancer patients,
nancial security. These themes describe well the concerns of ultimately the family role relationship affected bereavement
bereavement. adjustment. The quality of the family relationship, with greater
To measure core bereavement phenomena, Burnett and expression of family affect and cohesion, was found to be pre-
colleagues12 identied 17 items that they considered central dictive of the expression of fewer grief symptoms over time.22
to the process of bereavement. They categorized these items Bereavement becomes complicated (in the literature and in
under three subscales, namely images and thoughts (e.g., Do life) when adjustment is impeded, as in posttraumatic stress
you think about X?), acute separation (e.g., Do you nd disorder.23 Whether such bereavement occurs as a result of
yourself missing X?), and grief (e.g., Do reminders of X, vehicular accident, war, or natural disaster, the suddenness or
such as photos, situations, music, or places, cause you to cry overwhelming nature of the event dislodges the sense that all is
about X?).12 Although the purpose of this scale is to assess well with the world. Even in instances in which an elective
the intensities of the bereavement reaction in different com- medical procedure such as abortion occurs, the emotional
munity samples of bereaved subjects, the bereavement reac- response may not become evident until many years later.
tion that is being addressed is grief. Death before its time, as in children and young and middle-
The distinction between grief and depression in the bereaved aged adults, not only affects the bereaved directly but also
is an important one. As Middleton and associates13 concluded, affects the social roles of the survivors, which require read-
The bereaved can experience considerable pain and yet be justment. The idea that parental outcomes are worse when a
coping adaptively, and they can fulll many depressive criteria childs death is by suicide was not conrmed empirically.24
yet at the same time be experiencing phenomena that are not Another myth is that divorce is more common among bereaved
depressive in nature. Even in individuals with a history of couples than in the general population. The empirical evi-
sadness or irritability before bereavement, although they dence is insufcient either to substantiate or disconrm this
may have more intense expressions of grief, the rate of recov- myth.24
ery is the same as for those without such a history.14 Other Hutton and Bradley,25 in their study of the bereaved sib-
authors are not as sanguine and caution that subsyndromal lings of babies who were casualties of sudden infant death,
symptomatic depressions are frequently seen complications were uncertain as to whether these siblings actually exhibited
of bereavement that may be chronic and often are associated more behavioral problems or were thought to be doing so
with substantial morbidity.15 Nortriptyline and psychotherapy by mothers whose perceptions were distorted. The need for
have been found efcacious in the treatment of bereavement- greater attention to children who are bereaved was under-
related major depressive episodes.16 scored by Mahon,26 who observed that most of the literature in
Boelen and coworkers17 pointed out that traumatic grief is this area concerns parental impressions of childrens grief and
distinct from bereavement-related depression and anxiety. studies of adolescent bereavement. The hesitancy of children
Identifying these differences clinically is essential for appropri- to exhibit their own sadness so as not to upset their parents
ate treatment. A Bereavement Risk Questionnaire with 19 pos- requires that professionals encourage parents to give their
sible factors for identifying complicated bereavement was children permission to be sad when that is how they feel. By
distributed to 508 hospice bereavement coordinators. Of these, taking care of their parents, children may not receive the atten-
262 (52%) responded. Signicant risk factors for caregivers tion they require. In a study that sought to identify those fac-
included lack of social support, caregiver history of drug or tors that helped or hindered adolescent sibling bereavement, a
youngster stated: What helped me the most was my mother especially depression; and low self-esteem. Billings44 added prior
who was totally honest with me from the time Sarah got sick physical health problems to these predisposing factors. Shel-
through her death. My mother took the time to listen to how I don43 identied the following factors at the time of death: sud-
felt as well as understand and hug me.27 den and unexpected death, untimely death of a young person,
Formal programs of bereavement for childrens support preparation for the death, stigmatized deaths (e.g., AIDS, sui-
include peer support programs and art therapy programs. cide, culpable death), sex of the bereaved person (e.g., elderly
Institutions with bereavement programs, whether for children male widower), caring for the deceased person for >6 months,
or adults, often send cards at the time of a patients death, on and inability to carry out valued religious rituals. The impact of
the birthday of the deceased, and at 3, 6, 12, and 24 months trauma characterized by violence on bereavement was found
after the death.28 Pamphlets with information about grief, a by Kaltman and Bonanno to lead to posttraumatic stress disor-
bibliography of appropriate readings, and contact numbers of der symptoms beyond those of normal grief.45
support groups are also helpful.28 Lev and McCorkle29 cited Finally, after the death, such factors as level of perceived
Potockys30 nding that short-term programs of two to seven social support, lack of opportunities for new interests, and
sessions or meeting as needed were the most effective. Mad- stress from other life crises, as well as dysfunctional behaviors
docks31 observed that routine bereavement care can be helpful and attitudes appearing early in the bereavement period, con-
in identifying people at risk for complicated grieving. Family sumption of alcohol and drugs, smoking, morbid guilt, and
bereavement programs also have been found to lead to improved the professional caregivers gut feeling that this patient will not
parenting, coping, and caregiver mental health.32 Given that do well are predictive of poor outcomes.43,44 Knowledge of and
the best therapy is prevention, palliative care teams who iden- alertness to such predisposing factors are useful for the provi-
tify caregivers at risk for bereavement maladjustment can sion of help, both lay and professional, early in the course of
intervene early to prevent long term difculties.33 the bereavement so as to prevent further debilitating events.
Attention to bereavement support has also been given by
institutional trauma programs, in emergency departments, The Nature of Grief
and in critical care departments.1,3436 All of these programs
maintain contact with the bereaved so as to provide support Rando46 observed that, although Freud was not the rst person
and make referrals to pastoral care personnel and other profes- to examine the effects of bereavement, he nonetheless is taken as
sionals as needed. Indeed, the combination of religious psy- an important point of departure. The observation that grief is a
chotherapy and a cognitive-behavioral approach was observed normal process and that a lost love object is never totally relin-
to be helpful to highly religious bereaved persons.37 Religious quished are congruent with current thinking.46 The notion that
psychotherapy for a group of Malays who adhered to the reli- one needs to totally let go of the beloved, ascribed to Freud on
gion of Islam consisted of discussion and reading of verses of the basis of some of his work, has inuenced professionals to the
the Koran and Hadith, the encouragement of prayers, and a current day.
total of 12 to 16 psychotherapy sessions.37 Targeting of the The initiation of the modern study of death and dying,
follow-up approach to the characteristics of the population however, especially in America, is often attributed to Erich
eschews the notion that one size ts all. Lindemann, a physician at Massachusetts General Hospital,
A bereavement support group intervention was demon- who responded to the survivors of a re in Bostons Coconut
strated to have a signicant impact on the grief of homosexual Grove nightclub. Five hundred persons died as a result of the
men who were or were not seropositive for the human immun- re, which took place on Thanksgiving eve, 1942. Lindemann,
odeciency virus (HIV-1).38 The need for support was found a psychiatrist, was interested at the time in the emotional reac-
to be all the more necessary for bereaved women living with tion of patients to body disgurement and plastic surgery.47
HIV, who may be at increased risk for bereavement compli- With this background, Lindemann was struck by the similarity
cated with psychiatric morbidity and thoughts of suicide of responses between his patients reactions to facial disgure-
(Summers et al., p.225).39,40 Cognitive processing and nding ment or loss of a body part and the reactions of the survivors
meaning were found to have immunologic and health benets of the re (p. 105).47
independent of the baseline health status of bereaved HIV- Lindemanns study of 101 patients included (1) psychoneu-
positive homosexual men.41 This outcome has implications for rotic patients who lost a relative during the course of treat-
the approaches nurses use with other bereaved clients. ment, (2) relatives of patients who died in the hospital,
Cognitive processing and nding meaning can be helpful (3) bereaved disaster victims (Coconut Grove re) and their
to a variety of clients. However, older persons have been noted close relatives, and (4) relatives of members of the armed
to be more reluctant to express their feelings.42 Nurses can be forces.48 Based on these patients, he determined the ve indi-
helpful to these clients by encouraging them to express their cators that are pathognomonic for grief 48: (1) sensations of
feelings and being available when needed. somatic distress, such as tightness in the throat, choking and
Aside from such proactive approaches for all bereaved per- shortness of breath; (2) intense preoccupation with the
sons, Sheldon43 reported the following predisposing factors for image of the deceased; (3) strong feelings of guilt; (4) a loss of
a poor bereavement outcome: ambivalent or dependent rela- warmth toward others with a tendency to respond with
tionship; multiple prior bereavements; previous mental illness, irritability and anger; and (5) disoriented behavior patterns.
Bereavement 535
Lindemann coined the term grief work to describe the pro- if we do? With a death that question becomes, What if we
cess by which individuals attempt to adjust to their loss.47 had done? With the former question, there is the potential for
Various theorists have developed a series of stages and hope; with the latter query, there may be guilt.
phases of grief work.4952 The best known of these to the gen- Stephenson5 described a roller-coaster experience of hope
eral public are the stages formulated by Elizabeth Kbler-Ross. followed by negative experience countered by hope. Even with
Proposed for those facing a death, these stages have also been forewarning, preparation for loss may not occur, given that
applied to those experiencing a loss. Kbler-Ross53 identied this may be perceived to be a betrayal of the terminally ill per-
ve stages: denial and isolation, anger, bargaining, depression, son. There have also been instances of family members uncon-
and acceptance. The commonality among all theorists of the sciously preparing for the death of an individual and going
stages of grief is that the individual moves through (1) noti- through the grieving process, only to have that person recover
cation and shock, (2) experience of the loss emotionally and to nd no place in the lives of his or her loved ones. This is an
cognitively, and (3) reintegration. Rando,54 for example, used example of anticipatory grief.
the terms avoidance, confrontation, and reestablishment for The question of the utility of forewarning is one of how this
these three phases. Building on the work of Worden,55 Corr time is used. If it is used to make some preparation for role
and Doka56 propose the following tasks: change, such as becoming familiar with the intricacies of the
role the terminally ill person plays in the family (e.g., mastering
1. To share acknowledgment of the reality of death
a checking account or other nancial aspects of the family),
2. To share in the process of working through to the
such time may be used to the benet of all concerned. On the
pain of grief
other hand, anticipatory grieving that results in reinvestment
3. To reorganize the family system
of emotional energy before the death of the terminally ill per-
4. To restructure the familys relationship with the
son is detrimental to the relationship.
deceased and to reinvest in other relationships and
Byrne and Raphael59 found that widowers who were unable
life pursuits
to anticipate their wifes death, even when their wife had suf-
In regard to the last task, some dispute has arisen concern- fered a long nal illness, had a more severe bereavement
ing the degree to which separation from the deceased must reaction. (The term anticipate is being used by Byrne and
occur. Klass and associates57 made the compelling argument Raphael in the sense of forewarning.) Family members and
that such bonds continue. They advocated that survivors hold friends are warned when their loved one is diagnosed with
the deceased in loving memory for long periods, often forever, certain disease entities such as cancer with metastases. If the
and that maintaining an inner representation of the deceased is primary problem is Alzheimers disease, there may be a long
normal rather than abnormal. Winstons study of African- decline in which, ultimately, familiar gures are no longer
American grandmothers demonstrated that they maintained recognized. In either situation, the death of the ill person may
strong bonds with the deceased.58 be experienced both with sadness and with a sense of relief
The second area of dissension and new consensus is the that the caregiving burden is no more. The price of that relief
expectation that grief must be resolved within a year, which is is that the patient is no more.
not to say that the expected trajectory of grieving is one in The sense of relief experienced by caregivers is often a
which grief continues at an intense pitch for years. The ques- source of guilt feelings about wishing the patient dead. It is
tion of continuing bonds and the length of the grief process important to clarify for the family member or signicant other
are addressed again at the close of the chapter. In this next sec- that feelings of relief from being freed of the caregiver burden
tion, types of grief are examined. are not equivalent to wishing someone dead. A woman who
experienced relief from not having to care for her large hus-
band was assisted to examine this distinction and consequen-
o] tially was able to grieve uncomplicated by feelings of guilt.
Types of Grief Further, persons who have cared for a dying person may expe-
rience a sense of accomplishment knowing that they have done
The types of grief examined in this section are not exhaustive everything they could for their loved one.60 Schultz and associ-
of all types of grief but rather encompass the major categories. ates61 pointed out that bereavement is not only a phenomenon
that affects caregivers after the death but also . . . one that
Anticipatory Grief affects many caregivers before the death occurs (p. 8).
Duke,62 in a qualitative study of anticipatory grief, enlarged
Anticipatory grief shares similarities with other forms of grief. the understanding not so much of anticipatory grief but of the
It is also different. The onset may be associated with the receipt status changes of widowhood. She interviewed ve spouses in
of bad news.5 Anticipatory grief must be distinguished from the second year of their bereavement. Although the ndings
the concept of forewarning. An example of forewarning is learn- may have been biased by the distortion of hindsight, they pro-
ing of a terminal diagnosis. Anticipatory grief is an uncon- vide much food for thought. The research identied four areas
scious process, whereas forewarning is a conscious process. of change62: role change from spouse to caregiver during the
With forewarning of a terminal diagnosis the question is,What illness, followed by loss of those roles in bereavement and
needing to be cared for; relationship changes from being with implications and . . . to hold onto, and avoid relinquishing,
spouse to being alone; coping changes from being in suspense the lost loved one. These attempts, or some variants thereof,
to being in turmoil; and the change from experiencing and cause the complications in mourning.
gathering memories to remembering and constructing mem- Researchers have identied the diagnostic criteria for com-
ories. It is interesting that these ndings reect the general plicated grief disorder.66 These criteria include the current
changes that occur over a terminal illness and not the experi- experience (>1 year after a loss) of intensive intrusive thoughts,
ence of anticipatory grief. Anticipatory grief, as noted previ- pangs of severe emotion, distressing yearnings, feeling exces-
ously, is unconscious preparation for status change and not a sively alone and empty, excessively avoiding tasks reminiscent
conscious, deliberative process. Anticipatory grief is contrasted of the deceased, unusual sleep disturbances, and maladap-
with what is termed uncomplicated grief. tive levels of loss of interest in personal activities. Other
researchers have underscored the need for the specication of
Uncomplicated Grief complicated grief as a unique disorder and have developed an
inventory of complicated grief to measure maladaptive symp-
Uncomplicated grief, or normal grief, was described by Cowles63 toms of loss.6769 The Inventory of Complicated Grief is com-
as dynamic, pervasive, highly individualized, and a process. posed of 19 items with responses ranging from Never to
Worthington64 depicted a linear model of grief based on adjust- Rarely,Sometimes, Often, and Always. Examples of items
ment. In this model, an individual in a normal emotional state include,I think about this person so much that its hard for me
experiences a loss that causes a reaction and an emotional low; to do the things I usually do; Ever since she (or he) died it is
subsequently, the individual begins a recovery to his or her for- hard for me to trust people; I feel that it is unfair that I should
mer state. This process of recovery is occasioned by brief peri- live when this person died; and I feel lonely a great deal of the
ods of relapse, but not to the depths experienced previously. time ever since she (or he) died.69 This inventory may be help-
Ultimately the individual moves to adjustment to the loss. ful to health care practitioners because it differentiates between
Although this description simplies the turmoil that may be complicated grief and depression.70 Finally, it is the severity of
experienced, discussion of expressions of grief later in this chap- symptomatology and the duration that distinguishes abnormal
ter capture the physical, psychological, behavioral, and social and complicated responses to bereavement.71
upset that characterizes even uncomplicated grief. The Inventory of Complicated Grief was used by Ott
Niemeyer65 offered a vital new perspective by focusing on with 112 bereaved participants in a study in which those iden-
meaning reconstruction. He developed a set of propositions to tied as experiencing complicated grief were compared with
capture adaptation to loss: those who were not.72 Those with complicated grief both iden-
tied more additional life stressors and felt they had less social
1. Death as an event can validate or invalidate the con-
support than the other bereaved individuals in the study.
structions that form the basis on which we live, or it
It should be noted that there is some concern among pro-
may stand as a novel experience for which we have
fessionals that what is a normal process is being medicalized
no constructions.
by health care practitioners. Complicated grief, however, may
2. Grief is a personal process, one that is idiosyncratic,
require professional intervention.72 More is said about this
intimate, and inextricable from our sense of who
later in the chapter. Bearing this in mind, disenfranchised grief
we are.
poses different but potentially related problems.
3. Grieving is something we do, not something that is
done to us.
4. Grieving is the act of afrming or reconstructing a Disenfranchised Grief
personal world of meaning that has been challenged
Doka73 dened disenfranchised grief as the grief that persons
by loss.
experience when they incur a loss that is not or cannot be
5. Feelings have functions and should be understood as
openly acknowledged, publicly mourned, or socially supported.
signals of the state of our meaning-making efforts.
Doka continued, The concept of disenfranchised grief recog-
6. We construct and reconstruct our identities as sur-
nizes that societies have sets of normsin effect, grieving
vivors of loss in negotiations with others.
rulesthat attempt to specify who, when, where, how, how
Niemeyer65 viewed meaning reconstruction as the central long, and for whom people should grieve (p. 272).73 In addi-
process of grief. The inability to make meaning may lead to tion, these norms suggest who may grieve publicly and expect
complications. to receive support.
Those who are grieving the loss of relationships that may not
Complicated Grief be publicly acknowledgedfor example, with a mistress or with
a family conceived outside a legally recognized union, or in some
In her discussion of complicated mourning, Rando46 made cases with stepfamilies, colleagues, or friendsare not accorded
observations applicable to complicated grief. She observed the deference and support usually afforded the bereaved. Further
that, after a suitable length of time, the mourner is attempting nonsanctioned relationships, either heterosexual or homosexual,
to deny, repress, or avoid aspects of the loss, its pain, and its may result in the exclusion of individuals not legitimated by
Bereavement 537
blood or legal union. Individuals in homosexual relationships of society are described. It is important to note that what is con-
long standing who care for their partners throughout their last sidered appropriate in one group may be considered deviant
illness, may nd themselves barred both from the funeral and or even pathological in another.
from the home that was shared.74 In Table 271, physical, cognitive, emotional, and behav-
For some time, infection with HIV was hidden from the ioral symptoms of grief are presented. Table 271 is not
community, thereby depriving both the infected and their exhaustive of all of the potential symptoms but rather is illus-
caregivers of support. The AIDS quilt has done much to pro- trative of the expressions and manifestations of grief. What
vide a public mourning ritual but has not alleviated the disen- distinguishes so-called normal grief is that it is usually self-
franchised status of homosexual or lesbian partners. The result limited. Manifestations of grief at 1, 3, and 15 months after the
is what has been termed modulated mourning.74 This response death are not the same in intensity, nor are the outward man-
to stigmatization constrains the public display of mourning by ifestations that are the expressions of mourning.
the griever. In this situation, the griever is not recognized.
There are other instances in which a loss has not been legit- Mourning
imized. Loss resulting from miscarriage or abortion has only
recently been recognized. In Japan, a cemetery is devoted to OGorman76 contrasted death rituals in England with those in
letters written by families each year telling miscarried or aborted Ireland. She recalled the Protestant hushed respectfulness
children about the important events that occurred in the fam- which had somehow inltrated and taken over a Catholic com-
ily that year and also expressing continued grief at their loss. munity.76 The body was taken from the home by the funeral
Grieving in secret is a burden that makes the process more dif- director. Children continued with school and stayed with rela-
cult to complete. Disenfranchised grief may also be a harbin- tives; they were shielded from the death. By way of contrast, in
ger of unresolved grief. an Irish wake, The body, laid out by a member of the family,
in order to receive a special blessing, would be in the parlour
Unresolved Grief of a country house surrounded by owers from the garden
and lighted candles. The children, along with the adult mem-
Unresolved grief is a failure to accomplish the necessary grief bers of the family, viewed the corpse. When visitors had paid
work. According to Rando,54 a variety of factors may give rise to their last respects they would join the crowd in the kitchen
unresolved grief, including guilt, loss of an extension of the self, who would then spend all night recounting stories associated
reawakening of an old loss, multiple loss, inadequate ego devel- with the dead person.76 OGorman noted the plentiful avail-
opment, and idiosyncratic resistance to mourning (pp. 6465). ability of alcohol and stated, By the end of the night to the
In addition to these psychological factors, such social factors as uninitiated the event would appear to be more like a party
social negation of a loss, socially unspeakable loss, social isola- than a melancholy event. Although OGorman initially found
tion and/or geographic distance from social support, assump- this distasteful, she now believes that rituals like the Irish
tion of the role of the strong one, and uncertainty over the loss wake celebrate death as a happy occasion and bestow grace
(e.g., a disappearance at sea) may be implicated in unresolved upon those leaving life and upon a community of those who
grief (pp. 6667). By helping signicant others express their mourn them.76
feelings and complete their business before the death of a loved The Irish wake, like the reception held in a church base-
one, unresolved grief and the accompanying manifestations ment, hall, restaurant, or private home, serves not only for the
can be prevented to some extent. expression of condolences but also as an opportunity to rein-
Eakes and coworkers75 questioned whether closure is a nec- force the connections of the community. Anyone familiar with
essary outcome. They explored the concept of chronic sor- such events knows that a variety of social and business
row in bereaved individuals who experienced episodic bouts arrangements are made by mourners both within and outside
of sadness related to specic incidents or signicant dates. the immediate family. And although some gatherings are more
These authors suggested the fruitfulness of maintaining an reserved and others lustier, giving the deceased a good send-
open-ended model of grief. With this in mind, grief is always off (good being dened by the group) is central to each. The
unresolved to some degree; this is not considered pathological good send-off is part of the function of the funeral as a piacu-
but rather an acknowledgment of a death. lar ritethat is, as a means of atoning for the sins of the mor-
tal being and as preparation for life in the afterworld.77
Fulton77 noted two other functions of funerals, namely inte-
o] gration and separation. The former concerns the living; the
Expressions of Grief latter refers to separation from the loved one as a mortal per-
son. The value of the Irish wake, which in the United States
Symptoms of Grief may look more like the Protestant burial OGorman describes,
is the time spent together sharing stories and feelings. In the
In some of the earlier sections of this chapter, various mani- Irish wake as practiced in Ireland, one is not alone with ones
festations of grief were mentioned. In this section, expressions feelings but in the company of others who are devoting the
of grief that are within the range considered normal in this time to mourning (integration).
Table 271
Manifestations of Grief
Physical Cognitive Emotional Behavioral
Headaches Sense of depersonalization Anger Impaired work performance

Dizziness Inability to concentrate Guilt Crying
Exhaustion Sense of disbelief and confusion Anxiety Withdrawal
Muscular aches Idealization of the deceased Sense of helplessness Avoiding reminders of the
Sexual impotency Search for meaning of life Sadness deceased
Loss of appetite and death Shock Seeking or carrying reminders of
Dreams of the deceased the deceased
Insomnia Yearning
Preoccupation with image Overreactivity
Feelings of tightness or Numbness
hollowness of deceased Changed relationships
Self-blame
Breathlessness Fleeting visual, tactile, olfactory,
Relief
auditory hallucinatory experiences
Tremors
Shakes
Oversensitivity to noise
Source: Adapted from Doka, (1989), reference 10.
This devotion of time to mourning is also found in the Jew- a lock of hair or the footprint of a deceased newborn may have
ish religion, where the bereaved sit shiva, usually for 7 days.78 evolved from the practice in Victorian times of using hair for
In Judaism, the assumption is that the bereaved are to focus on mourning brooches and lockets. As a salesperson of these
their loss and the grieving of that loss. They are to pay no items commented, They liked to be reminded of their dead in
attention to worldly considerations. This period of time of those days. Now its out of sight, out of mind.79
exemption from customary roles may facilitate the process. These mourning practices provide continuing bonds with
Certainly having a minion, in which 10 men and women (10 the deceased and offer a clue to the answer to the question
men for Orthodox Jews) say prayers each evening, reinforces the posed for the last section of this chapter: When is it over?
reality of the death and the separation. For the Orthodox, the Before addressing this question, another needs to be raised,
mourning period is 1 year. and that is the question of support.
A very different pattern is practiced by the Hopi in Arizona.
The Hopi have a brief ceremony with the purpose of complet-
ing the funeral as quickly as possible so as to get back to cus- o]
tomary activities.78 The fear of death and the dead and of spirits A Question of Support
induces distancing by the Hopi from nonliving phenomena.
Stroebe and Stroebe78 contrasted Shinto and Buddhist Formal Support
mourners in Japan with the Hopi. Both Shinto and Buddhist
mourners practice ancestor worship. As a result, the bereaved Many of the mourning practices noted previously provide
can keep contact with the deceased, who become ancestors. support by the community to the bereaved (Table 272). For-
Speaking to ancestors as well as offering food is accepted mal support in the Jewish tradition is exemplied by the prac-
practice. tice of attending a minion for the deceased person. The minion
In contrast to this Japanese practice, what occurs in the expresses support for the living. It is formal in that it is pre-
United States is that those bereaved who speak with a scribed behavior on the part of observant Jews and incorpo-
deceased person do so quietly, hiding the fact from others, rates a prayer service.
believing others will consider it suspect or pathological. It is, Other examples of formal support include support groups
however, a common occurrence. Bringing food to the ances- such as the widow-to-widow program and the Compassionate
tor or (e.g., to celebrate the Day of the Dead) to the cemetery, Friends, Inc. for families of deceased children. The assumption
is part of the mourning practice in Hispanic and many other underlying the widow-to-widow program is that grief and
societies. mourning are not in and of themselves pathological and that
Practices, however, change with time, although one can lay persons can be helpful to one another. The widow-to-widow
often nd the imprint of earlier rituals. The practice of saving program provides a formal mechanism for sharing ones
Bereavement 539
Table 272
Bereavement Practices
Lay Professional
1. Friendly visiting 1. Clergy visiting

2. Provision of meals 2. Clergy counseling
3. Informal support by previously bereaved 3. Nurse, M.D., psychologist, social
worker, psychiatrist counseling
4. Lay support groups 4. Professionally led support groups
5. Participation in cultural and religious 5. Organization of memorial services by
rituals hospice and palliative care
organizations
6. A friendly listener 6. A thoughtful listener
7. Involvement in a cause-related group 7. Referral to individuals with similar
cause-related concerns
8. Exercise 8. Referral to a health club
9. Joining a new group 9. Referral to a bereavement program
emotions and experience with individuals who have had a

similar experience. The Widowed Persons Service offers sup- Table 273
Assessment of Grief
port for men and women via self-help support groups and a
variety of educational and social activities. The Compassion- The bereaved often are weary from caring for the deceased.
ate Friends, Inc., also a self-help organization, seeks to help During this period they may not have looked after
parents and siblings after the death of a child. Other support themselves. An assessment should include
groups may or may not have the input of a professional to run 1. A general health checkup and assessment of somatic
the group. symptoms
Support groups may be open-ended (i.e., without a set 2. A dental visit
number of sessions), or they may be closed and limited to a 3. An eye checkup as appropriate
particular set of individuals. Support groups with a set num-
4. Nutritional evaluation
ber of sessions have a beginning and end and are therefore
more likely to be closed to new members until a new set of ses- 5. Sleep assessment
sions begins. Open-ended groups have members who stay for 6. Examination of ability to maintain work and
varying lengths of time and may or may not have a topic for family roles
each session. 7. Determination of whether there are major changes in pre-
Other formal support entails working with a therapist or sentation of self
other health care provider (bereavement counseling). Arnold80 8. Assessment of changes resulting from the death and the
suggested that the nurse should follow a process to assess the difculties with these changes
meaning of loss, the nature of the relationship, expressions 9. Assessment of social networks
and manifestations of grief, previous experience with grief, The health care worker needs to bear in mind that there is no
support systems, ability to maintain attachments, and progres- magic formula for grieving. The key question is whether the
sion of grief. Further, Arnold underscored the importance of bereaved is able to function effectively. Cues to the need for
viewing grief as a healing process (Table 273). She gave the assistance include
following example of a patient situation and two different 1. Clinical depression
approaches to diagnosis:80 2. Prolonged deep grief
A newly widowed woman feels awkward about 3. Extreme grief reaction
maintaining social relationships with a group of mar- 4. Self-destructive behavior
ried couples with whom she had participated with her 5. Increased use of alcohol and/or drugs
husband.
6. Preoccupation with the deceased to the exclusion
Grief as a pathological diagnosis: social of others
isolation. 7. Previous mental illness
Grief as a healthy diagnosis: redenition of social 8. Perceived lack of social support
supports.
In addition to conventional talking therapy, such tech- part of a family or social group is of tremendous import to the
niques as letter writing, empty chair, guided imagery, and physical, psychological, and social welfare of the individual.
journal writing can be used (Table 274).81 In letter writing, Community in a psychosocial sense and a continuing role in
the empty chair technique, and guided imagery, the bereaved the group are key factors in adjustment.
is encouraged to express feelings about the past or what life is In societies where the widow has no role without her hus-
like without the deceased. These techniques can be helpful band, she is guratively if not literally disposed of in one way
as the wish I had said becomes said. A journal is also a vehi- or another. It is for this reason that the woman who is the rst
cle for recording ongoing feelings of the lived experience of in her group to experience widowhood has a much more dif-
bereavement. cult social experience than a woman who is in a social group
Another part of bereavement counseling is the instillation where several women have become widows. In the former
or reemergence of hope. As Cutcliffe82 concluded, There are there is no reference group; in the latter there is.
many theories of bereavement counseling, with commonalities The presence of family and friends takes on added signi-
between these theories. Whilst the theories indicate implicitly cance after the initial weeks after the funeral. In those initial
the re-emergence of hope in the bereft individual as a result of weeks, friendly visiting occurs with provision of a variety of
the counseling, they do not make specic reference to how this types of foods considered appropriate in the group. After the
inspiration occurs. Cutcliffe saw the clear need to understand initial period, friendly visiting is likely to decrease, and the
this process. bereaved individuals may nd themselves alone or the objects
In her exposition of the concept hope, Stephenson83 of nancial predators. The counsel by the health care provider
noted the association made by Frankl84 between hope and or by family and friends, not to make life-altering decisions
meaning. Stephenson stated, Frankl equated hope with hav- (e.g., moving) at this time unless absolutely necessary, contin-
ing found meaning in life, and lack of hope as [having] no ues to be valuable advice. On the other hand, the comment
meaning in life.83 Meaning-making appears key to the emer- that time makes it easier is a half-truth that is not perceived
gence of hope, and hope has been associated with coping.85 as helpful by the bereaved.86,87
In hospice programs, health care providers encourage dying What is helpful is being listened to by an interested person.
persons and their families to have hope for each day. This Quinton87 disliked the term counseling in that is implies
compression of ones vision to the here and now may also be the availability of a person with good counsel to confer. What
useful for the person who is grieving the loss of a loved one. Quinton considered important was lots of listening to what
Hope for the future and a personal future is the process that the victim wants to off-load. She observed, The turning
Cutcliffe82 wished to elucidate. It may be a process that is pred- point for me was realizing that I had a right to feel sad, and to
icated on hope for each day and having found meaning for grieve and to feel miserable for as long as I felt the need.87 By
the past. Sikkema and colleagues40 compared the effectiveness owning the grieving process, Quinton provided herself with
of individual and group approaches by evaluating individual the most important support for her recovery from a devastat-
psychotherapy and psychiatric services on demand with a sup- ing experienceher mothers murder in a massacre by the
port group format. The strategies employed in dealing with Irish Republican Army in 1987. The lesson is applicable, how-
grief included establishing a sense of control and predictabil- ever, to any bereaved person regardless of whether the death
ity, anger expression and management, resolution of guilt, was traumatic or anticipated. Quintons turning point is another
promotion of self-mastery through empowerment, and devel- clue to answering the question of the last section of this chap-
opment of new relationships. Those assigned to individual ter: When is it over?
therapy may or may not have taken advantage of the option.
Future research should examine three groups: those receiv-
ing individual counseling, those receiving group therapy, and o]
those assigned no specific intervention but given informa- When Is It Over?
tion about various options for counseling and support in a
pamphlet. To use the colloquial phrase, its not over until its over. What
A therapist provides a vehicle for ongoing discussion of the does this mean? As long as life and memory persist, the
loss that informal caregivers may be unable to provide. A sup- deceased individual remains part of the consciousness of
port group of bereaved individuals or periodic contact by an family and friends. When is the grieving over? Unfortunately,
institutional bereavement service may also prove useful. What there is no easy answer and the only reasonable response, is
is helpful depends on the individual and his or her needs and It depends. Lindemanns concept of grief work,47,48 men-
also on the informal support that is available. tioned earlier in this chapter, is applicable. Sooner or later
that work needs to be accomplished. Delay protracts the time
Informal Support when accommodation is made. And grief work is never over,
in the sense that there will be moments in years to come
Informal support that is perceived as supportive and helpful when an occasion or an object revives feelings of loss. The
can assist the bereaved to come to terms with life after the difference is that the pain is not the same acute pain as that
death of the beloved. Whether the bereaved is isolated or is experienced when the loss initially occurred. How one
Bereavement 541
Table 274
Counseling Interventions
It must be emphasized that grief is not a pathology. It is a normal process that is expressed in individual ways. The following
techniques may prove helpful to the individual who is experiencing guilt about things not said or done. This list is not exhaustive,
merely illustrative.
1. Letter writing The bereaved writes a letter to the deceased expressing the thoughts and feelings that may or
may not have been expressed.
2. Empty chair The bereaved sits across from an empty chair on which the deceased is imagined to be sitting.
The bereaved is encouraged to express his or her feelings.
3. Empty chair with picture A picture of the deceased is placed on the chair to facilitate the expressions of feelings by
the bereaved.
4. Therapist assumes role of In this intervention, the therapist helps the bereaved to explore his or her feelings toward the
the deceased deceased by participating in a role play.
5. Guided imagery This intervention demands a higher level of skill than, for example, letter writing. Guided
imagery can be used to explore situations that require verbalization by the bereaved to achieve
completion. Imagery can also be used to recreate situations of dissension with the goal of
achieving greater understanding for the bereaved.
6. Journal writing This technique provides an ongoing vehicle for exploring past situations and current feelings. It
is a helpful intervention to many.
7. Drawing pictures For the artistically and not so artistically inclined, drawing pictures and explaining their
content is another vehicle for discussing feelings and concerns.
8. Analysis of role changes Helping the bereaved obtain help with the changes secondary to the death, such as with
balancing a checkbook or securing reliable help with various home needs; assists with some of
the secondary losses with the death of a loved one.
9. Listening The bereaved has the need to tell his or her story. Respectful listening and concern for the
bereaved is a powerful intervention that is much appreciated.
10. Venting anger The professional can suggest the following:
Banging a pillow on the mattress. If combined with screaming, it is the best to do with the
windows closed and no one in the home.
Screamingat home or parked in a car in an isolated spot with the windows closed.
Cryingat home, followed by a warm bath and cup of tea or warm milk.
11. Normality barometer Assuring the bereaved that the distress experienced is normal is very helpful to the bereaved.
arrives at the point of accommodation is a process termed days. He seems so vulnerable now, when you think
letting go. that each one was a last time.
Mrs. Kennedy also wrote about the process of letting go,
Letting Go although she didnt call it that88:
The term letting go refers to acknowledgment of the loss of Soon the nal day will come around againas inex-
future togethernessphysical, psychological, and social. orably as it did last year. But expected this time. It
There is no longer a we, only an I or a we without the will nd some of us different people than we were a
deceased. Family members speak of events such as the rst year ago. Learning to accept what was unthinkable
time a ower or bush blooms, major holidays, birthdays, when he was alive changes you.
anniversaries, and special shared times. Corless88 quoted
Finally, she addressed an essential truth of bereavement88:
Jacqueline Kennedy, who spoke about last year (meaning
19621963) as the last time that her husband, John Kennedy, I dont think there is any consolation. What was lost
experienced a specic occasion: cannot be replaced.
On so many dayshis birthday, an anniversary, Letting go encompasses recognizing the uniqueness of the
watching his children running to the seaI have individual. It also entails nding meaning in the relationship
thought, but this day last year was his last to see and experience. It does not mean cutting oneself off from
that. He was so full of love and life on all those memories of the deceased.
Continuing Bonds 15. Zisook S, Shuchter SR, Sledge PA, Paulus M, Judd LL. The spec-
trum of depressive phenomena after spousal bereavement. J Clin
Klass and associates57 contributed to the reformulation of think- Psychiatry 1994;55(Suppl):35.
ing on the nature of accommodating to loss. Although theo- 16. Reynolds CF, Miller MD, Pasternak RE, Frank E, Perel JM,
rists postulated that the grief process should be completed in Cornes C, Houck PR, Mazumdar S, Dew MA, Kupfer DJ. Treat-
1 year, with ones emotional energies once again invested in the ment of bereavement-related major depressive episodes in later
living, the experience of the bereaved suggested otherwise. life: A controlled study of acute and continuation treatment
with nortriptyline and interpersonal psychotherapy Am J Psy-
Bereaved persons visit the grave for periodic discussions with
chiatry 1999;156:202208.
the deceased. They gaze at a picture and seek advice on various
17. Boelen PA, van den Bout J, de Keijser J. Traumatic grief as a dis-
matters. Such behavior is not pathological. The provocative order distinct from bereavement-related depression and anxiety:
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Scale experience elevated grief suggests not only an additional Am J Psychiatry 2003;160:13391341.
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Conceptual and clinical issues revolving around relationships.
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Death Studies 2003;27:667690.
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28o] Betty Davies
Supporting Families in Palliative Care

I hope someday youll nd a way for families to understand how they should act in order to help a
patient. The best help you can get from your family is understanding, for them to listen to you and
understand you. . . . To help the family understand the illness, to be a support for the person who is
ill: That is the greatest treasure to the person with cancer.Daughter of 73-year-old man with
extensive colon cancer
Key Points o]
Family-centered care is a basic tenet of palliative care philosophy, Family-Centered Palliative Care
which recognizes that terminally ill patients exist within the family
system. The patients illness affects the whole family, and, in turn, Recognizing the importance of a family focus necessitates
the familys responses affect the patient. Supporting families in clearly dening what is meant by family. Most often, families
palliative care means that nurses must plan their care with an in palliative care do consist of patients, their spouses, and their
understanding not only of the individual patients needs but also of children.1 But in todays world of divorce and remarriage,
the family system within which the patient functions. steprelatives must also enter into the family portrait. In other
Families with a member who requires palliative care are in instances, people unrelated by blood or marriage may func-
transition. Families have described this as a transition of fading tion as family. Therefore, the denition of family must be
away, characterized by seven dimensions that help nurses to expanded. The family is a group of individuals inextricably
understand families experiences and to support them. linked in ways that are constantly interactive and mutually
Level of family functioning also plays a role in family experience reinforcing. Family can mean direct blood relatives, relation-
and serves to guide nursing interventions for families with varying ships through an emotional commitment, or the group or per-
levels of functioning. son with which an individual feels most connected.2 Moreover,
family in its fullest sense embraces all generationspast, pres-
ent, future; those living, those dead, and those yet to be born.
Shadows of the past and dreams of the future also contribute
to the understanding of families.
Palliative care programs are based on the principle that the
family is the unit of care. In practice, however, the family is
often viewed as a group of individuals who can either prove
helpful or resist efforts to deliver care. Nurses and other health
professionals must strive to understand the meaning of the
palliative experience to the family. If quality care is to be pro-
vided, nurses need to understand how all family members per-
ceive their experience, how the relationships t together, and
that a multitude of factors combine to make families what they
are. However, only recently has research gone beyond focusing
on the needs of dying patients for comfort and palliation to
addressing issues relevant to other family members. Much of
this research has focused on the familys perspective of their
needs3; experiences and challenges faced47; adaptation and
coping skills required for home care3,811; the supportiveness of
nursing behaviors12 or physician behaviors13; and satisfaction
with care.14,15 Most research has focused on families of patients
with cancer, though recent reports extend to end-of-life care
545
for other diagnostic populations, such as Parkinsons disease,4 ending of life as they knew it. They came to realize that the ill
cardiac disease,5 and dementia.16 Findings make it clear that family member was no longer living with cancer but was now
family members look to health professionals to provide qual- dying from cancer.
ity care to the patient. Family members also expect health pro- Despite the fact that family members had been told about
fessionals to meet their own needs for information, emotional the seriousness of the prognosis, often since the time of diag-
support, and assistance with care.14 nosis, and had experienced the usual ups and downs associ-
Much of the research that purports to address the impact of ated with the illness trajectory, for many the gut realization
cancer on the family is based on the perceptions of individuals that the patients death was inevitable occurred suddenly: It
either the patient or adult family members (usually the spouse). struck me hard-it hit me like a bolt. Dad is not going to get
As well, many of the studies were conducted retrospectively, better! The awareness was triggered when family members
that is, after the patients death. But even studies conducted saw, with new eyes, a change in the patients body or physical
during the palliative period frequently exclude the patient capacity, such as the patients weight loss, extreme weakness,
the one who is at the center of the palliative care situation. lack of mobility, or diminished mental capacity. Realizing that
Examining the palliative experience of the family unit has been the patient would not recover, family members began the tran-
rare. sition of fading away. As one patient commented, My body
As a basis for offering optimal support to families in pallia- has shrunk so muchthe other day, I tried on my favorite
tive care, this chapter focuses on describing the ndings of a old blue dress and I could see then how much weight I have
research program that prospectively examined the experiences lost. I feel like a skeleton with skin! I am getting weaker. . . . I
of such families.17 The research evolved from nurses concerns just cant eat much now, I dont want to. I can see that I am
about how to provide family-centered palliative care. Nurses fading. . . . I am denitely fading away.
in a regional cancer center constantly had to attend to the The transition of fading away is characterized by seven
needs of not only patients but also patients families, particu- dimensions: redening, burdening, struggling with paradox,
larly as they moved back and forth between hospital and home. contending with change, searching for meaning, living day by
In searching the literature for guidelines about family-centered day, and preparing for death. The dimensions do not occur in
care, they found that many articles were about the needs of linear fashion; rather, they are interrelated and inextricably
patients and family members, about levels of family members linked to one another. Redening, however, plays a central
satisfaction with care, and about family members perceptions role. All family members experience these dimensions, although
of nurses, but nothing really described the families experi- patients, spouses, and children experience each dimension
ences as they coped with the terminal illness of a beloved fam- somewhat differently.
ily member. Research involving families included patients with
advanced cancer, their spouses, and at least one of their adult Redening
children (>18 years of age). Since the completion of the origi-
nal research, families with AIDS, Alzheimers disease, and car- Redening involves a shift from what used to be to what is
diac disease have provided anecdotal validation of the ndings now. It demands adjustment in how individuals see them-
for their experiences. In addition, families of children with selves and each other. Patients maintained their usual patterns
progressive, life-threatening illness have provided similar vali- for as long as possible and then began to implement feasible
dation. Therefore, it seems that the conceptualization has rele- alternatives once they realized that their capacities were seri-
vance for a wide range of families in palliative care. The ndings ously changing. Joe, a truck driver, altered his identity over
from this research program form the basis for the description time: I just cant do what I used to. I nally had to accept the
that follows; references to additional research studies are also fact that the seizures made it unsafe for me to drive. Joe
included to supplement and emphasize the ongoing develop- requested to help out at his companys distribution desk.
ment of knowledge in the eld of family-centered end-of-life When he could no longer concentrate on keeping the orders
care. straight, Joe offered to assist with supervising the light load-
ing. One day, Joe was acutely aware he didnt have the energy
to even sit and watch the others: I couldnt do it anymore, Joe
o] sighed. I had reached the end of my work life and the begin-
The Transition of Fading Away ning of the end of my life. Another patient, Cora, lamented
that she used to drive to her sons home to baby-sit her toddler-
The common view is that transitions are initiated by changes, aged grandchildren; then her son dropped the children off at
by the start of something new. However, as Bridges18 suggests, her house to preserve the energy it took for her to travel; and
most transitions actually begin with endings. This is true for now, her son has made other child care arrangements. He
families living with serious illness in a loved one. The nurses brings the children for only short visits because of her extreme
research ndings generated a theoretical scheme that concep- fatigue.
tualized families experiences as a transitiona transition that Both Joe and Cora, like the other patients, accepted their
families themselves labeled as fading away. The transition of limitations with much sadness and a sense of great loss. Their
fading away for families facing terminal illness began with the focus narrowed, and they began to pay attention to details of
Supporting Families in Palliative Care 547
everyday life that they had previously ignored or overlooked. attempt to ll new roles as caregivers. The degree to which
Joe commented,When I rst was at home, I wanted to keep in family members experienced this phenomenon varied accord-
touch with the guys at the depot; I wanted to know what was ing to patients redening. When patients were able to redene
going on. Now, I get a lot of good just watching the grandkids themselves, spouses had an easier time. Such patients accepted
out there playing in the yard. spouses offers of support; patients and spouses were able to
Patients were eager to reinforce that they were still the same talk about the changes that were occurring. Spouses felt satis-
on the inside, although they acknowledged the drastic changes ed in the care that they provided. But when patients were less
in their physical appearance. They often became more spiri- able to redene, then spouses offers of support were rejected
tual in their orientation to life and nature. As Joe said, I always or unappreciated. For example, Ralphs wife worried about his
liked being outsidewas never much of an ofce-type person. work pattern and its impact on his colleagues. She encouraged
But, now, it seems I like it even more. That part of me hasnt him to cut back, but Ralph only ignored her pleas and implied
changed even though its hard for some of the fellas (at work) that she didnt understand how important this accreditation
to recognize me now. When patients were able to redene was to the future of his school. Even when Ralph was no longer
themselves as Joe did, they made the best of their situation, able to go to the ofce, he continued to work from home, fre-
differentiating what parts of them were still intact. Joe contin- quently phoning his colleagues to supervise their progress on
ued, Yeah, I like just being outside, or watching the kids. And, the report. His wife lamented, For an educated man, he doesnt
you know, they still come to their Grandpa when their toy know much. I guess its too late to teach an old dog new tricks.
trucks break downI can pretty much always x em. Similarly, In such situations, spouses avoided talking about or doing
Cora commented: At least, I can still make cookies for when anything that reminded the patient of the changes he or she
my family comes, although I dont make them from scratch was experiencing but not acknowledging. The relationship
anymore. Patients shared their changing perceptions with between the spouse and patient suffered. Rather than feeling
family members and others, who then were able to offer under- satised with their care, spouses were frustrated and angry,
standing and support. although often they remained silent and simply endured the
Patients who were unable to redene themselves in this way situation. The ill person contributed signicantly to the care-
attempted to maintain their regular patterns despite the obvi- givers ability to cope. Indeed, the ill person was not simply a
ous changes in their capacity to do so. They ended up frus- passive recipient of care but had an impact on the experience
trated, angry, and feeling worthless. These reactions distanced of the caregiving spouse. Similarly, in their study of factors
them from others, resulting in the patients feeling alone and, that inuence family caregiving of persons with advanced can-
sometimes, abandoned. Ralph, for example, was an educa- cer, Strang and Koop20 found that the ill person contributed
tional administrator. Despite his deteriorating health, he signicantly to the capacity of the spouse to continue to pro-
insisted that he was managing without difculty. Nothings vide care despite their experience of overwhelming emotional
wrong with me, really. . . . We are being accredited this year. and physical strain. Caregivers drew strength from the dying
Theres a lot to do to get ready for that. Ralph insisted on person when the ill person accepted the impending death, had
going into the ofce each day to prepare the necessary reports. an understanding of the caregivers needs, and had attitudes,
His increasing confusion and inability to concentrate made values, and beliefs that sustained their caregivers.
his reports inaccurate and inadequate, but Ralph refused to Adult children also redened the ill family member; they
acknowledge his limitations or delegate the work. Instead, his redened their ill parent from someone who was strong and
colleagues had to work overtime to correct Ralphs work after competent to someone who was increasingly frail. Children felt
he left the ofce. According to Ralphs wife, anger and frustra- vulnerable in ways they had not previously experienced. Most
tion were commonplace among his colleagues, but they were often, children perceived that the changes in their ill parent
reluctant to discuss the issue with Ralph. Instead, they avoided were the result of disease and not intentional: Its not my
conversations with Ralph, and he complained to his wife father doing this consciously.Younger adult children were par-
about his colleagues lack of interest in the project. ticularly sensitive to keeping the situation private, claiming
For the most part, spouses took the patients physical changes they wanted to protect the dignity of the patient, but seemed to
in stride. They attributed the changes to the disease, not to the want to protect their own sense of propriety. For example, one
patient personally, and as a result, they were able to empathize young woman in her early twenties was devastated when her
with the patient. Patients redening focused on themselves, fathers urinary bag dragged behind him as he left the living
the changes in their physical status and intrapersonal aspects; room where she and her friends were visiting. It was difcult
spouses redening centered on their relationship with the for some young adults to accept such manifestations of their
patient. Spouses did their best to continue on as normal, pri- parents illness. Adolescents in particular had a difcult time
marily for the sake of the patient. In doing so, they considered redening the situation. They preferred to continue on as if
alternatives and reorganized their priorities. nothing was wrong and to shield themselves against any infor-
Sherman19 described the reciprocity of suffering that mation that would force them to see the situation realistically.
family members experience, which results from the physical When the ill parent was able to redene to a greater degree,
and emotional distress that is rooted in their anguish of deal- then children were better able to appreciate that death is part
ing with the impending death of the loved one and in their of life. They recognized their own susceptibility and vowed to
take better care of their own health; older children with fami- felt by patients or adult children specically. Caregiver burden,
lies of their own committed to spending more quality time usually by spouses, has been described in terms of physical
with their children. Joe talked, although indirectly, with his burden, which includes fatigue and physical exhaustion,21
son about the situation: I wont be here forever to x the kids sleeplessness,22 and deterioration of health.23 Social burden
toys. Together, Joe and his son reminisced about how Joe had encompasses limited time for self 24 and social stress related to
always been available to his son and grandchildren as Mr. Fix- isolation.25 Regardless of the type of burden, however, most
it. Joe valued his dads active participation in his life and caregivers, including the ones in the fading away studies,
promised to be the same kind of father to his own sons. In expressed much satisfaction with their caregiving.26 Despite
contrast, when the ill parent was unable to redene, then chil- feeling burdened, most caregivers would repeat the experi-
dren tended to ignore the present. They attempted to recreate ence: Yes, it was difcult and exhausting, and there were days
the past to construct happy memories they never had. In doing I didnt think I could manage one more minute. But, if I had to
so, they often neglected their own families. Ralphs daughter do it over again, I would. I have no regrets for what I am doing.
described her dad as a workaholic. Feeling as if she had never Children, too, experienced burdening, but the source
had enough time with her dad, she began visiting her parents stemmed from the extra responsibilities involved in helping to
daily, with suggestions of places she could take him. He only care for a dying parent superimposed on their work responsi-
became annoyed with her unfamiliar, constant presence: Its bilities, career development, and their own families. As a result,
okay she comes over every day, but enough is enough. adult children of all ages felt a mixture of satisfaction and
The extent to which spouses and adult children commented exhaustion. Their sense of burdening was also inuenced by
on the important contribution made by the dying family mem- the ill parents redeningif the ill parent acknowledged their
ber is a provocative nding that underscores the importance of efforts, they were more likely to feel satisfaction. However,
relationships among and between family members in facilitat- childrens sense of burdening was also inuenced by the state
ing their coping with the situation of terminal illness. of health of the well parent. If that parent also was ill or debil-
itated, the burden on children was compounded. If children
Burdening were able to prioritize their responsibilities so that they could
pay attention to their own needs as well as helping both their
Feeling as if they are a burden for their family is common among parents, they felt less burdened. Children seemed less likely
patients. If patients see themselves as purposeless, dependent, than their well parents to perceive caregiving as something
and immobile, they have a greater sense of burdening their they themselves would do. Of course, they did not have the life
loved ones. The more realistically patients redened them- experience of a long-term relationship that motivated the
selves as their capacities diminished, the more accurate they spouses to care for their partners.
were in their perceptions of burdening. They acknowledged Finding effective ways to support family caregivers is criti-
other family members efforts, appreciated those efforts, and cal, because an increase in the proportion of elderly people in
encouraged family members to rest and take time to care for the population means growing numbers of people with chronic,
themselves. Patients who were less able to redene themselves life-threatening, or serious illness require care. The responsi-
did not see that they were burdening other family members in bility for the care of such individuals is increasingly being
any way. They denied or minimized the strain on others. As placed on families. Respite care is often suggested as a strategy
Ralph said during the last week of his life,I cant do much, but for relieving burden in family caregivers.3,4,9 One review8
I am ne really. Not much has changed. Its a burden on my was conducted of studies examining the effect of respite provi-
wife, but not much. It might be some extra work. . . . She was sion on caregivers. Surprisingly, the researchers found little
a nursing aide, so she is used to this kind of work. evidence that respite provision had either a consistent or an
Most spouses acknowledged the extra load of caring for enduring benecial effect on caregivers well being. The authors
their dying partner, but indicated that they did not regard the offered two explanations: the studies were methodologically
situation as a burden. They agreed that its just something poor and respite care often failed to facilitate the development
you do for the one you love. Spouses did not focus on their of socially supportive relationships to provide a moderating
own difculties; they managed to put aside their own distress inuence.
so that it would not have a negative impact on their loved one. However, another potential factor inuencing the success
They sometimes shared stories of loneliness and helplessness, of respite care may be the dynamics within the family, in par-
but also stories of deepening respect and love for their partner. ticular between the patient and family caregivers. Respite must
Again, spouses of patients who were able to redene were ener- be assessed in conjunction with the role of redening in bur-
gized by the patients acknowledgment of their efforts and were dening. Support for this suggestion comes from a study,10
inspired to continue on. Spouses of patients who were not able based in the Netherlands, of the experiences of caregivers,
to redene felt unappreciated, exhausted, and confessed to which showed that support from informal and professional
waiting for the patient to die. caregivers was not sufcient to balance the stresses of caregiv-
The literature provides a comprehensive description of the ing and the missing element may be internal to the family.
multidimensional nature of the burden experienced by family These ndings encourage greater exploration into respite care
caregivers, but no attention has been given to the burdening and its meaning to caregivers. In one study of home-based
family caregiving, caregivers differentiated between cognitive manageable pieces, and increasingly they focused inward. The
and physical breaks.11 They valued cognitive breaks during greatest change that spouses faced was in their relationship
which they remained within the caregiving environment, but with the patient. They coped by attempting to keep everything
physical separation from the caregiving environment was as normal as possible. Children contended with changes that
valuable only if it contributed in some meaningful way to the were more all-encompassing. They could not withdraw as
caregiving. their ill parent did, nor could they prioritize their lives to
the degree that their well parent could. They easily become
Struggling with Paradox exhausted. As Joes son explained, Its a real challenge coming
by this oftenI try to come twice a week and then bring the
Struggling with paradox stems from the fact that the patient is kids on the weekends. But I just got a promotion at work this
both living and dying. For patients, the struggle focuses on year so thats extra work too. Seems like I dont see my wife
wanting to believe they will survive and knowing that they will muchbut shes a real trooper. Her dad died last year so she
not. On good days, patients felt optimistic about the out- knows what its like.
come; on other days, they succumbed to the inevitability of
their approaching demise. Often, patients did not want to Searching for Meaning
give up but at the same time were tired of ghting. They
wanted to continue on for the sake of their families but also Searching for meaning has to do with seeking answers to help
wanted it to end soon so their families could get on with in understanding the situation. Patients tended to journey
their lives. Patients coped by hoping for miracles, ghting for inward, reect on spiritual aspects, deepen their most impor-
the sake of their families, and focusing on the good days. As tant connections, and become closer to nature: The spiritual
Joe said, I like to think about the times when things are pretty thing has always been at the back of my mind, but its develop-
good. I enjoy those days. But, on the bad days, when Im tired, ing more. . . . When youre sick like that, your attitude changes
or when the pain gets the best of me, then I just wonder if it toward life. You come not to be afraid of death.
wouldnt be best to just quit. But you never knowmaybe Ill Spouses concentrated on their relationship with the patient.
be the one in a million who makes it at the last minute. He Some searched for meaning through personal growth, whereas
then added wryly, Hmmm, big chance of that. others searched for meaning by simply tolerating the situa-
Spouses struggled with a paradox of their own: they tion. Some focused on spiritual growth, and others adhere
wanted to care for and spend time with the patient, and they rigidly to their religion with little, if any, sense of inner growth
also wanted a normal life. They coped by juggling their time or insight. Joes wife commented,Joe and I are closer than ever
as best they could, and usually put their own life on hold. now. We dont like this business, but we have learned to love
Spouses who managed to nd ways of tending to their own each other even more than when we were youngersickness is
needs usually were less exhausted and reported fewer health a hard lesson that way. In contrast, Ralphs wife said with res-
problems than spouses who neglected their own needs. For ignation, Hes so stubbornalways has been. I sometimes
years, Joe and his wife had been square dancers. They hadnt wonder why I stayed. But, here I am. Spouses and patients
been dancing together for many months when his wife resumed may attribute different meanings to other aspects of their
going to dance night as a sub or to prepare the evenings experience as well. For example, when seeing their loved one in
refreshments. Sometimes, I feel guilty for going and leaving pain, many spouses felt helpless and fearful. Once the pain was
Joe at home, but I know I need a break. When I did miss dance controlled, they felt peaceful and relaxed and interpreted this
night, I could see I was getting really bitchyI need to get out as an indication that the couple would return to their old rou-
for a breather so I dont suffocate Joe. tines. The patients meaning of the experience, however, often
Children struggled with hanging on and letting go to a focused on future consequences of the pain.6 The meaning
greater extent than their parents. They wanted to spend time attributed to the patients experience also inuenced spousal
with their ill parent and also to get on with their own lives. bereavement. For example, spouses who witnessed the patient
Feeling the pressure of dual loyalties (to their parents and to die a painful death and who believed that physician negligence
their own young families), the demands of both compounded was the cause of the pain experience elevated anger and much
the struggle that children faced. distress after the death.27
Children tended to reect on and reevaluate all aspects of
Contending with Change their lives: It puts in perspective how important some of our
goals are. . . . Having nancial independence and being able to
Those facing terminal illness in a family member experience retire at a decent age. . . . Those things are important, but not
changes in every realm of daily liferelationships, roles, social- at the expense of sacricing today.
ization, work patterns. The focus of the changes differed among
family members. Patients faced changes in their relationships Living Day to Day
with everyone they knew. They realized that the greatest
change of their life was underway and that life as they knew it Not all families reached the point of living day to day. If
would soon be gone. They tended to break down tasks into patients were able to nd some meaning in their experience,
then they were better able to adopt an attitude of living each ally focused on restoring health and enabling a return to nor-
day. Their attitude was characterized by making the most of mal life. So, the idea of providing a patient with aggressive
it. As one patient described it, Theres not much point in versus palliative treatment has, until recently, not been a well-
going over things in the past; not much point in projecting discussed issue in the treatment of the patient with heart dis-
yourself too far into the future either. Its the current time that ease. For most patients with heart disease, and particularly for
counts. Patients who were unable to nd much meaning in those with heart failure, the decline in functional status is
their experience, or who didnt search for meaning, focused slower than for patients diagnosed with cancer.5 However, if
more on getting through it. As Ralph said with determina- palliative care is considered only after disease-related care fails
tion, Sure, I am getting weaker. I know I am sick. . . . But I will or becomes too burdensome, the opportunity for patients to
get through this! achieve symptom relief and for patients and family members
Spouses who searched for meaning focused on making the to engage in the process of fading away may be lost. Conse-
best of it while making every effort to enjoy the time they had quently, following a model of care wherein issues of treatment
left with their partner. Other spouses simply endured the situ- and end-of-life care are discussed early and throughout the ill-
ation without paying much attention to philosophizing about ness trajectory facilitates patient and family coping and enables
the experience. Children often had difculty concentrating on nurses to optimally support families.
living day to day, because they were unable to defer their obli- Varying disease trajectories for other conditions, such
gations and therefore were constantly worrying about what as dementia, also influence the nature of support that nurses
else needed to be done. However, some children were still able provide patients and families. For example, in a comparative
to convey an attitude of Live for today, todayworry about study of staff s assessment of support needed by families of
tomorrow, tomorrow. dementia and cancer patients, staff in dementia care stressed
signicantly more the need for forming support groups for
Preparing for Death families, offering respite care, educating families, and trying
to relieve families feeling of guilt. In the cancer care group,
Preparing for death involved concrete actions that would have staff assigned greater importance to being available to listen,
benet in the future, after the patient died. Patients had their creating a sense of security, and supporting the family after
familys needs uppermost in their minds and worked hard to death.16
teach or guide family members with regard to various tasks
and activities that the patient would no longer be around to
do. Patients were committed to leaving legacies for their loved o]
ones, not only as a means of being remembered, but also as a Family Involvement According to Location of Care
way of comforting loved ones in their grief. Joe spent time
jotting down a few Mr. Fix-it pointers for his wife and son. Over the past century, nursing homes and hospitals increas-
Ralphs energy was consumed by focusing on the work he still ingly have become the site of death. A recent national study
had to do, so he was unable to consider what he might do for evaluated the U.S. dying experience at home and in institu-
his wife and daughter. tional settings.28 Family members of 1578 deceased individuals
Spouses concentrated on meeting the patients wishes. were asked via telephone survey about the patients experience
Whatever the patient wanted, spouses would try to do. They at the last place of care at which the patient spent >48 hours.
attended to practical details and anticipated their future in Results showed that two thirds (67.2%) of patients were last
practical ways. Children offered considerable help to their par- cared for in an institution. Family members reported greater
ents with legal and nancial matters. They also prepared their satisfaction with patients symptom management and with
own children for what was to come. A central aspect was emotional support for both the patient and family if they
reassuring the dying parent that they would take care of the received care at home with hospice services. Families have
surviving parent. Children also prepared for the death by greater opportunities for involvement in the care if home care
envisioning their future without their parent: I think about it is possible. Family involvement in hospital care also makes for
sometimes, . . . about how my children will never have a better outcomes. Among geriatric patients receiving end-of-
grandfather. It makes me so sad. Thats why the photos we life care in a hospital setting, family involvement before death
have been taking are so important to me. . . . They will show reduces the use of technology and increases the use of comfort
our children who their grandfather was. care as patients die.29 Nurses, therefore, must consider how
best to include families in the care of their dying loved ones,
regardless of the location of care.
o] Large variations exist in the provision of home-based pal-
Palliative Care for Diagnoses Other Than Cancer liative and terminal care across the United States, although the
development of hospice home services has enabled increasing
Traditionally, palliative care practice and discussions have numbers of seriously ill patients to experience care at home.
focused on families of cancer patients. At the same time, care However, dying at home can present special challenges for
of the patient with cardiac disease, for example, has tradition- family members. Lack of support and lack of condence have
been found to be determinants contributing to hospital admis- cians must work with the dying patients, with family caregivers,
sions and the breakdown of informal caregiving for people and with each other as equal partners in the caregiving process.
with a life-threatening illness.25 A lack of support from Clinicians must be available to families, offering anticipa-
the health care system is given as the reason many caregivers tory guidance and support throughout the caregiving experi-
have to admit their loved one to the hospital.30 They also ence. Health care professionals must assist family members as
report that fragmentation of services and lack of forward they traverse the maze of treatment and care decisions, rang-
planning jeopardizes the success of home care.3133 ing from whether to give particular as needed medications,
Moreover, the decision for home care has a profound effect or what food to make for the patient to eat, to whether or not
on family members.34,35 In an ethnographic study investigating to seek hospice care, to sign do-not-resuscitate documents,
palliative care at home,36,37 caregiver decisions for home care or to terminate treatment. It is critical that palliative care pro-
were characterized in three ways. Some caregivers made unin- fessionals continually engage with caregivers in forward plan-
formed decisions, giving little consideration to the implica- ning, interpretation, and monitoring of the inevitable decline
tions of their decision: I made the decision just like that. . . . and dying process of the ill person, so as to facilitate the feeling
There wasnt much thought that went into it. Such decisions in caregivers that they are secure and supported in their phys-
were made early in the patients disease trajectory or when the ically and emotionally exhausting work. Families need to
patient was imminently dying, and they were often inuenced know whom to call and when, and how to reach them.
by the unrealistic portrayal in the media about dying at home. Some simple guidelines for families can serve to encourage
Indifferent decisions occurred if caregivers felt they had little their coping. For example, caregivers should be told to keep a
choice. The patients needs and wishes often drove decisions, small notebook handy for jotting down questions and answers.
with caregivers paying little attention to their own needs. The pages may be divided in half lengthwise, using the column
Negotiated decisions for home care typically occurred if care- on the left for questions and the other column for answers. Or,
givers and patients were able to talk openly about dying and the left-sided page may be used for questions and the opposite
had done so throughout the disease trajectory. page for the answers. They should be advised to have the note-
Family members decisions were inuenced by three major book with them whenever they talk with a member of the pal-
factors: making promises to care for the loved one at home, the liative care team. Family members should be reassured that
desire to maintain as much as possible a normal life for the nothing is trivial. All questions are important, and all obser-
patient and themselves, and negative experiences with institu- vations are valuable. They should be encouraged to say when
tional care. Of interest, family members did not think of them- they do not understand something, and to ask for information
selves as the target of professional interventions. They were to be repeated as necessary. Palliative care professionals can
reluctant to ask for help or to let their needs be known. Conse- help by spelling words that family members do not under-
quently, when working with caregiving families, health care stand or by jotting down explanations. They should reassure
providers could mediate discussions with the aim of coming family members that asking for help is not a sign of failure, but
to a mutually acceptable decision about home care. Such dis- rather a sign of good common sense. Following such simple
cussions could allow the sharing of perspectives to allow for guidelines helps keep families from feeling overwhelmed. And,
decisions that would work well for all concerned. Ideally, such if they do feel out of control, such guidelines, simple as they
discussions should begin early in the disease trajectory. may seem, give family members some concrete action they can
Importantly, ongoing attention should be paid to improving take to help with whatever the situation may be.
hospital end-of-life care so that families feel they have a mean- Clinicians must also remember that their own attitudes are
ingful alternative to home care. A small scale study to develop critical; if families feel they are a nuisance to health care
and evaluate care pathways for the last days of life in a commu- providers, they tend to be more anxious and to shy away from
nity setting was developed and tested in the United Kingdom, asking for help. Furthermore, clinicians are in ideal positions to
based on the pioneering work of Ellershaw.38 The plan outlines advocate with politicians and policy makers to expand resources
the expected course of a patients trajectory; brings together all for home-based palliative care programs so that families can
the anticipated aspects of care, particularly with regard to symp- adequately and humanely be supported in their caregiving work.
tom management and caregiver support; and encourages for-
ward planning to avoid crisis admission to the hospital.39 It
serves as a model for how home care can be optimally delivered
o]
to those with terminal illness, echoing Doyles40 observation that
Guidelines for Nursing Interventions
good palliative care is an exercise in anticipation.
Clinicians must recognize the emotional impact of provid-
Much of the nursing literature, which provides guidelines for
ing palliative care at home and must be sensitive to the some-
nursing care, addresses the importance of four major inter-
times overwhelming task that caregiving imposes on family
ventions that have relevance for all members of the palliative
caregivers. Acknowledging that availability and access to service
care team:
is important, Stajduhar and Davies41 specied that care must be
provided within a team context so that families can benet from 1. Maintain hope in patients and their family members.
a whole set of services needed to support death at home. Clini- As families pass through the illness trajectory, the
nature of their hope changes from hope for cure, to care providers in providing good palliative care; the following
hope for remission, to hope for comfort, to hope for guidelines offer further direction. They are derived from the
a good death. Offering hope during fading away can direct accounts of patients, spouses, and children about the
be as simple as reassuring families that everything strategies they used to cope with the dimensions of fading away.
will be done to ensure the patients comfort. Talking
about the past also can help some families by Redening
reafrming the good times spent together and the
ongoing connections that will continue among Supporting patients and other family members with reden-
family members. Referring to the future beyond the ing requires that health care providers appreciate how difcult
immediate suffering and emotional pain can also it is for family members to relinquish familiar perceptions of
sustain hope. For example, when adult children themselves and adopt unfamiliar, unwelcome, and unasked for
reassure the ill parent that they will care for the changes into their self-perceptions. Disengagement from for-
other parent, the patient is hopeful that the surviving mer perceptions and the adoption of new orientations occur
spouse will be all right. over time. Nurses and other care providers are challenged to
2. Involve families in all aspects of care. Include help family members anticipate and prepare for what lies
them in decision-making, and encourage active ahead, while not pushing them at a pace that threatens their
participation in the physical care of the patient. sense of integrity. Each family member redenes at his or her
This is their lifethey have the right to control it as own pace; interventions must be tailored according to the
they will. Involvement is especially important for individual needs of each. At the same time, health care providers
children when a family member is very ill. The must support the family as a unit by reassuring family mem-
more children are involved in care during the ter- bers that their varying coping responses and strategies are to
minal phase, and in the activities that follow the be expected.
death, the better able they are to cope with bereave- Provide opportunities for patients to talk about the losses
ment.42 incurred due to the illness, the enforced changes, the adapta-
3. Offer information. Tell families about what is tions they have made, and their feelings associated with these
happening in straightforward terms and about what changes. Reinforce their normal patterns of living as long as
they can expect to happen, particularly about the possible and as appropriate. When they can no longer function
patients condition and the process their loved one as they once did, focus on what patients still can do, reinforc-
is to undergo. Doing so also provides families with a ing those aspects of self that remain intact. Acknowledge that
sense of control. Initiate the discussion of relevant roles and responsibilities may be expressed in new and differ-
issues that family members themselves may hesitate ent ways and suggest new activities appropriate to the patients
to mention. For example, the nurse might say, interest and current capabilities.
Many family members feel as if they are being The focus with spouses and children centers on explaining
pulled in two or more directions when a loved how the disease or treatment contributes to changes in the
one is very ill. They want to spend as much patient physically, psychologically, and socially. Provide oppor-
time as possible with the patient, but they also feel tunities for spouses to talk about how changes in the patient
the pull of their own daily lives, careers, or affect their marital relationship. Help children appreciate their
families. How does this t with your parent from another perspective, such as in recalling favorite
experience? memories or identifying the legacies left. Discuss how they can
4. Communicate openly. Open and honest face their own vulnerability by channeling concerns into posi-
communication with nurses and other health tive steps for self-care. Reinforce the spouses and childrens
professionals is frequently the most important need usual patterns of living for as long as possible and as appropri-
of families. They need to be informed; they need ate; when former patterns are no longer feasible, consider adjust-
opportunities to ask questions and to have their ments or alternatives.
questions answered in terms that they can Provide opportunities for spouses to discuss how they may
comprehend. Open communication among team reorganize priorities in order to be with and care for the patient
members is basic to open communication with the to the degree they desire. Consider resources that enable the
families. spouse to do this, such as the assistance of volunteers, home
support services, or additional nursing services. Teach care-
It is not an easy task for families to give up their comfort- giving techniques if the spouse shows interest. With the chil-
able and established views of themselves as death approaches. dren, discuss the degree to which they want to be open or
The challenge for members of the health care team is to help private about the patients illness with those outside the fam-
family members anticipate what lies ahead without violating ily. Acknowledge that family members will vary in their abil-
their need to relinquish old orientations and hopes at a pace ity to assimilate changes in the patient and in their family
they can handle. These four broad interventions assist health life.
Burdening Reassure them that their ambivalence is a common response.

Encourage time out as a way to replenish depleted energy.
Palliative care professionals can help patients nd ways to
relieve their sense of burden and can provide patients with Contending with Change
opportunities to talk about their fears and concerns and to
consider with whom they want to share their worries. In this Palliative care team members must realize that not all families
way, patients may alleviate their concern for putting excessive communicate openly or work easily together in solving prob-
demands on family members. Explain the importance of a lems. Nurses in particular can support patients and family
break for family members and suggest that patients accept members to contend with change by creating an environment
assistance from a volunteer or home support services at those in which families explore and manage their own concerns and
times to relieve family members from worry. Explain that when feelings according to their particular coping style. Providing
patients afrm family members for their efforts, this con- information so that families can explore various alternatives
tributes to family members feeling appreciated and reduces helps them to determine what adjustments they can make.
their sense of burden. Make information available not only verbally but also in writ-
Nurses and all members of the interdisciplinary team can ing. Or, tape-record informative discussions so that families
assist spouses with burdening by supporting the spouses reas- can revisit what they have been told.
surances to the patient that he or she is not a burden. Acknowl- Rituals can be helpful during periods of terminal illness. A
edge spouses efforts when they put their own needs on hold to family ritual is a behavior or action that reects some symbolic
care for the patient; help them to appreciate the importance of meaning for all members of the family and is part of their col-
taking care of themselves as a legitimate way of sustaining the lective experience. A ritual does not have to be religious in
energy they need for the patient. Talk with spouses about how nature. Rituals may already exist, or they can be newly created
they might take time out, and consider the various resources to assist the family in contending with change. For example, the
they might use. Acknowledge the negative feelings spouses writing of an ethical will, whereby one passes on wisdom to
may have about how long they can continue; do not negate others or elaborates on his or her hopes for their loved ones
their positive desire to help. future, can help ill family members communicate what they
For children, acknowledge the reorganization and the consid- might not be able to verbalize to their loved ones. Developing
erable adjustment in their daily routines. Explain that ambiva- new rituals can help with the changes in everyday life; for
lent feelings are commonthe positive feelings associated with example, one woman had always been the sounding board for
helping and the negative feelings associated with less time spent her children on their return from school. It was a pattern that
on careers and their own families. Acknowledge that communi- continued as her children entered the work force. Cancer of
cating regularly with their parents by telephoning or visiting the trachea prevented her participation in the same way. Instead,
often is part of the work of caring; the extra effort involved she requested her young adult children to sit by her side, hold
should not be underestimated. Encourage children to take time her hand, and recount their days. Instead of words, the mother
out for themselves, and support them in their desire to maintain responded with varying hand squeezes to let them know she
involvement in their typical lives. was listening. The altered daily ritual served both mother and
children in adapting to the changes in their lives.
Struggling with Paradox
Searching for Meaning
Facing the usual business of living and directly dealing with
dying is a considerable challenge for all members of the family. Palliative care professionals help families search for meaning
The care providers challenge is to appreciate that it is not pos- by enabling them to tell their personal story and make sense of
sible to alleviate completely the familys psychosocial and spirit. It is essential that team members appreciate the value of
itual pain. Team members must face their own comfort level in storytellingwhen families talk about their current situation
working with families who are facing paradoxical situations and recollections of the past, it is not just idle chatter. It is a
and the associated ambivalent feelings. Like family members, vital part of making sense of the situation and coping with it.
nurses, social workers, physicians, and all team members may Professional team members must appreciate that much of
also sometimes want to avoid the distress of struggling with searching for meaning involves examining spiritual dimensions,
paradox. They may feel unprepared to handle conversations in belief systems, values, and relationships within and outside the
which no simple solution exists and strong feelings abound. family. Nurses can be supportive by suggesting approaches for
Care providers can support patients and other family personal reection, such as journal writing or writing letters.
members by providing opportunities for all family members
to ventilate their frustrations and not minimizing their pain Living Day to Day
and anguish. On the good days, rejoice with them. Listen to
their expressions of ambivalence, and be prepared for the ups In living day to day, families make subtle shifts in their orienta-
and downs and changes of opinion that are sure to occur. tion to living with a dying family member. They move from
thinking that there is no future to making the most of the time details, such as nalizing a will and distributing possessions.
they have left. This is a good time to review the resources available Encourage them to do last things, such as participating in a
to the family, to ensure that they are using all possible sources of special holiday celebration.
assistance so that their time together is optimally spent. Provide information to spouses and children about the dying
process. If the plan is for death at home, provide information
Preparing for Death about what procedures will need to be followed and the
resources that are available. Provide opportunities for family
In helping families prepare for death, nurses in particular members to express their concerns and ask questions. Encourage
must be comfortable talking about the inevitability of death, them to reminisce with the patient as a way of saying good-bye
describing the dying process, and helping families make plans and acknowledge the bittersweet quality of such remembrances.
for wills and funerals. It is important not to push or force such Provide information to the adult children about how they can
issues; it is equally important not to avoid them because of the help their own children with the impending death.
nurses personal discomfort with dying and death. Encourage The foregoing guidelines are intended to assist nurses and
such discussions among family members while acknowledging all members of the palliative care team in their care of individ-
how difcult they can be. Afrm them for their courage to face ual family members. The guidelines are summarized in Table
these difcult issues. Encourage patients to attend to practical 281. In addition, family-centered care also means focusing on
Table 281
Dimensions of Fading Away: Nursing Interventions for Family Members
Redening Assist family members to take on tasks appropriate to their

Appreciate that relinquishing old and comfortable views of comfort level and skill and share tasks among themselves
themselves occurs over time and does not necessarily occur Support family members reassurances to patient that he or
simultaneously with physical changes in the patient she is not a burden. Explain that when patients reafrm
Tailor interventions according to the various abilities of family members for their efforts, this contributes to their
family members to assimilate the changes feeling appreciated and lessens the potential for
feeling burdened
Reassure family members that a range of responses and
coping strategies is to be expected within and among Explain the importance of breaks for family members.
family members Encourage others to take over for patients on a regular basis
so family members can take a break
Provide opportunities for patients to talk about the illness,
the enforced changes in their lives, and the ways in which they Acknowledge the reorganization of priorities and the
have adapted; for spouses to talk about how changes in the considerable adjustment in family routines and extra demands
patient affect their marital relationship; and for children to placed on family members. Acknowledge the work of caring
talk about their own feelings of vulnerability and the degree for all family members
to which they want to be open or private about the situation Realize that family members will vary in their ability to
Reinforce normal patterns of living for as long as possible and assimilate the changes and that a range of reactions and
as appropriate. When patterns are no longer viable, consider coping strategies is normal
adjustments or alternatives
Struggling with Paradox
Focus on the patients attributes that remain intact, and
Appreciate that you, as a nurse, cannot completely alleviate the
acknowledge that roles and responsibilities may be expressed
psychosocial-spiritual pain inherent in the familys struggle
differently. Consider adjustments or alternatives when former
patterns are no longer feasible Assess your own comfort level in working with people facing
paradoxical situations and ambivalent feelings
Help spouses consider how they might reorganize priorities
and consider resources to help them do this Provide opportunities for family members to mourn the loss
of their hopes and plans. Do not minimize these losses; help
Help children appreciate their parent from another
them modify their previous hopes and plans and consider
perspective, such as in recalling favorite stories or identifying
new ones
legacies left
Listen to their expressions of ambivalence, and be prepared
Burdening for the ups and downs of opinions
Provide opportunities for patients to talk about fears and Ensure effective symptom management, because this
anxieties about dying and death, and to consider with whom allows patients and family members to focus outside
to share their concerns the illness
Help patients stay involved for as long as possible as a way of Explain the importance of respite as a strategy for renewing
sustaining self-esteem and a sense of control energy for dealing with the situation
(continued )
Table 281
Dimensions of Fading Away: Nursing Interventions for Family Members (continued )
Contending with Change Living Day to Day

Create an environment in which family members can explore Listen carefully for the subtle shifts in orientation to living
and manage their own concerns and feelings. Encourage with a dying relative and gauge family members readiness for
dialogue about family members beliefs, feelings, hopes, fears, a new orientation
and dilemmas so they can determine their own course of Ensure effective control of symptoms so that the patient
action can make the most of the time available. Assess the need
Recognize that families communicate in well-entrenched for aids
patterns and their ability to communicate openly and Without minimizing their losses and concerns, afrm
honestly differs their ability to appreciate and make the most of the
Normalize the experience of family members and explain that time left
such feelings do not negate the positive feelings of concern Review resources that would free family members to spend
and affection more time with the patient
Provide information so families can explore the available
resources, their options, and the pros and cons of the various Preparing for Death
options. Provide information in writing as well as verbally Assess your own comfort level in talking about the
Explain the wide-ranging nature of the changes that occur inevitability of death, describing the dying process, and
within the patients immediate and extended family helping families make plans for wills and funerals
Provide information about the dying process
Searching for Meaning
Discuss patients preferences about the circumstances of
Appreciate that the search for meaning involves examination
their death. Encourage patients to discuss these issues
of the self, of relationships with other family members, and of
with their family. Acknowledge how difcult such discussions
spiritual aspects.
can be
Realize that talking about the current situation and their
Encourage patients to do important last things, such as
recollections of past illness and losses is part of making sense
completing a project as a legacy for their family
of the situation
Provide opportunities for spouses and children to express
Encourage life reviews and reminiscing. Listen to the life
their concerns about their future without the patient. Provide
stories that family members tell
them with opportunities to reminisce about their life
Suggest approaches for self-examination such as journal together. Acknowledge such remembrances will have a
writing, and approaches for facilitating interactions between bittersweet quality
family members such as writing letters
Source: Davies et al. (1995), reference 17.
the family as a unit. Health care providers must appreciate that this continuum rather than being positive or negative, good
the family as a whole has a life of its own that is distinct but or bad.
always connected to the individuals who are part of it. Both Some families acknowledged the pain of past experience
levels of care are important.17 The families in the fading with illness, loss, and other adversity and integrated previous
away study also provided insights about how family function- learning into how they were managing their current situation.
ing plays a role in coping with terminal illness in a family These families expressed a range of feelings, from happiness
member. and satisfaction, through uncertainty and dread, to sadness
and sorrow. Family members acknowledged their vulnerabili-
ties and their ambivalent feelings. All topics were open for dis-
o] cussion. There were no clearcut rights and wrongs, and no
Family Functioning and Fading Away absolute answers to the familys problems. They applied a ex-
ible approach to problem-solving and openly exchanged all
Families experienced the transition of fading away with information. They engaged in mutual decision-making, con-
greater or lesser difculty, depending on their level of func- sidering each members point of view and feelings. Each fam-
tioning according to eight dimensions: integrating the past, ily member was permitted to voice both positive and negative
dealing with feelings, solving problems, utilizing resources, con- opinions in the process of making decisions. They agreed on
sidering others, portraying family identity, fullling roles, and the characteristics of their family and allowed individual vari-
tolerating differences. These dimensions occurred along a con- ation within the family. They allocated household and patient
tinuum of functionality; family interactions tended to vary along care responsibilities in a exible way. These families were often
Table 282
Dimensions of Family Functioning: Examples of the Range of Behaviors
More Helpful Less Helpful
Integrating the Past

Describe the painful experiences as they relate to present Describe past experiences repeatedly
experience
Describe positive and negative feelings concerning the past Dwell on painful feeling associated with past experiences
Incorporate learning from the past into subsequent Do not integrate learning from the past to the current
experiences situation
Reminisce about pleasurable experiences in the past Focus on trying to x the past to create happy memories
which are absent from their family life
Dealing with Feelings
Express a range of feelings including vulnerability, fear, and Express predominantly negative feelings, such as anger, hurt,
uncertainty bitterness, and fear
Acknowledge paradoxical feelings Acknowledge little uncertainty or few paradoxical feelings
Solving Problems
Identify problems as they occur Focus more on fault nding than on nding solutions
Reach consensus about a problem and possible courses of action Dwell on the emotions associated with the problem
Consider multiple options Unable to clearly communicate needs and expectations
Open to suggestions Feel powerless about inuencing the care they are receiving
Approach problems as a team rather than as individuals Display exaggerated response to unexpected events
Withhold or inaccurately share information with other family
members
Utilizing Resources
Utilize a wide range of resources Utilize few resources
Open to accepting support Reluctant to seek help or accept offers of help
Open to suggestions regarding resources Receive help mostly from formal sources rather than from
informal support networks
Take the initiative in procuring additional resources
Express satisfaction with results obtained Express dissatisfaction with help received
Describe the involvement of many friends, acquaintances, Describe fewer friends and acquaintances who offer help
and support persons
Considering Others
Acknowledge multidimensional effects of situation on other Focus concern on own emotional needs
family members
Express concern for well-being of other family members Fail to acknowledge or minimize extra tasks taken on by
Focus concern on patients well-being others
Appreciate individualized attention from health care Display inordinate need for individualized attention
professionals, but do not express strong need for such attention
Direct concerns about how other family members are
managing rather than with themselves
Identify characteristic coping styles of family unit and of Describe own characteristic coping styles rather than the
individual members characteristic way the family as a unit coped
Demonstrate warmth and caring toward other family members Allow one member to dominate group interaction
Consider present situation as potential opportunity for Lack comfort with expressing true feelings in the family
familys growth and development group
Value contributions of all family members Feign group consensus where none exists
Describe a history of closeness among family members Describe few family interactions prior to illness
(continued )
Table 282
Dimensions of Family Functioning: Examples of the Range of Behaviors (continued )
More Helpful Less Helpful
Fullling Roles
Demonstrate exibility in adapting to role changes Demonstrate rigidity in adapting to role changes and
responsibilities
Share extra responsibilities willingly Demonstrate less sharing of responsibilities created by extra
demands of patient care
Adjust priorities to incorporate extra demands of patient care Refer to caregiving as a duty or obligation
and express satisfaction with this decision Criticize or mistrust caregiving provided by others
Tolerating Differences
Allow differing opinions and beliefs within the family Display intolerance for differing opinions or approaches of
caregiving
Tolerate different views from people outside the family Demonstrate critical views of friends who fail to respond as
expected
Willing to examine own belief and value systems Adhere rigidly to belief and value systems
Source: Davies, et al. (1994), reference 46. Reprinted with permission.
amenable to outside intervention and were comfortable in seek- Palliative care clinicians are encouraged to complete assess-
ing and using external resources. Such families were often ments of level of family system functioning early in their
appealing to palliative care nurses and other personnel, because encounters with families.43,44 This is the best time to begin to
they openly discussed their situation, shared their concerns, develop an understanding of the family as a whole, as a basis
and accepted help willingly. for the services to be offered. In fact, the value of focusing on
Other families were more challenging for palliative care patterns of family functioning has been demonstrated by a
professionals. These were families who hung on to negative clinical approach that screens for families, rather than individ-
past experiences and continued to dwell on the painful feel- uals, at high risk.45 Assessment of family functioning provides
ings associated with past events. They appeared to avoid the a basis for effective interactions to ensure a family-focused
feelings of turmoil and ambivalence, shielding themselves approach in palliative care. The eight dimensions of family
from the pain, often indicating that they did not usually functioning provide a guideline for assessment. Table 282
express their feelings. These families approached problems by summarizes these dimensions and gives examples of the range
focusing more on why the problem occurred and who was at of behaviors evident in each dimension. The table summarizes
fault rather than generating potential solutions. They often those behaviors that on one end of the continuum are more
were unable to communicate their needs or expectations to helpful, and on the other end are less helpful to families facing
each other or to health care professionals and were angry when the transition of fading away.
their wishes were not fullled. They expressed discrepant Understanding the concept of family functioning enhances
views only in individual interviews, not when all members the nurses ability to assess the unique characteristics of each
were present, and tended not to tolerate differences. Varying family. An assessment of family functioning enables the nurse to
approaches by health care workers were not generally well tol- interact appropriately with the family and help them solve
erated either. These families did not adapt easily to new roles, problems more effectively (Table 283). For example, in families
nor did they welcome outside assistance. Such families showed where communication is open and shared among all members,
little concern for others. They used few resources, because the nurse can be condent that communication with one family
family members were often unable or reluctant to seek help member will be accurately passed on to other members. In fam-
from others. Such families often presented a challenge for ilies where communication is not as open, the nurse must take
nursing care. Nurses must realize expecting such families to extra time to share the information with all members. Or, in
pull together to cope with the stresses of palliative care is families who dwell on their negative past experiences with the
unrealistic. It is essential not to judge these families, but rather health care system, nurses must realize that the establishing trust
to appreciate that the family is coping as best it can under very is likely to require extra effort and time. Families who are open
difcult circumstances. These families need support and afr- to outside intervention are more likely to benet from resource
mation of their existing coping strategies, not judgmental referrals; other families may need more encouragement and
criticisms. time to open their doors to external assistance.
Table 283
Family Functioning: Guidelines for Interventions in Palliative Care
Assessing Family Functioning Solving Problems

Use dimensions of family functioning to assess families. For Use your assessment of family functioning to guide your approaches.
example: Do members focus their concern on the patients well- For example, in families where there is little consensus about the
being and recognize the effect of the situation on other family problems, rigidity in beliefs, and inexibility in roles and
members, or do family members focus their concerns on their relationships, the common rule of thumboffering families
own individual needs and minimize how others might be various options so they may choose those that suit them best
affected? Putting your assessment of all the dimensions together tends to be less successful. For these families, carefully consider
will help you determine to what degree you are dealing with a which resource provides the best possible t for that particular
more cohesive family unit or a more loosely coupled group of family. Offer resources slowly, perhaps one at a time. Focus
individuals, and hence what approaches are most appropriate. considerable attention on the degree of disruption associated with
Be prepared to collect information over time and from different the introduction of the resource, and prepare the family for the
family members. Some family members may not be willing to change that ensues. Otherwise, the family may reject the resource
reveal their true feelings until they have developed trust. as unsuitable and perceive the experience as yet another example
Others may be reluctant to share differing viewpoints in the of failure of the health care system to meet their needs.
presence of one another. In some families, certain individuals Be aware of the limitations of family conferences and be prepared to
take on the role of spokesperson for the family. Assessing follow up. Family conferences work well for more cohesive family
whether everyone in the family shares the viewpoints of the units. However, where more disparity exists among the members,
spokesperson, or whether different family members have they may not follow through with the decisions made, even though
divergent opinions but are reluctant to share them, is a consensus was apparently achieved. Though not voicing their
critical part of the assessment. disagreement, some family members may not be committed to
Listen to the familys story and use clinical judgment to the solution put forward and may disregard the agreed-upon
determine where intervention is required. Part of plan. The nurse needs to follow up to ensure that any trouble
understanding a family is listening to their story. In some spots are addressed.
families, the stories tend to be repeated and the feelings Be prepared to repeat information. In less-cohesive families, do not
associated with them resurface. Talking about the past is a assume that information will be accurately and openly shared
way of being for some families. It is important that the with other family members. You may have to repeat information
nurse determine whether family members are repeatedly several times to different family members and repeat answers to
telling their story because they want to be better understood the same questions from various family members.
or because they want help to change the way their family Evaluate the appropriateness of support groups. Support groups can
deals with the situation. Most often the stories are retold be a valuable resource. They help by providing people with the
simply because family members want the nurse to opportunity to hear the perspectives of others in similar situations.
understand them and their situation better, not because However, some family members need more individualized
they are looking for help to change the way their family attention than a support group provides. They do not benet from
functions. hearing how others have experienced the situation and dealt with
the problems. They need one-to-one interaction focused on
themselves with someone with whom they have developed trust.
Adjust care to the level of family functioning. Some families are
more overwhelmed by the palliative care experience than others.
Understanding family functioning can help nurses appreciate
that expectations for some families to pull together to cope
with the stress of palliative care may be unrealistic. Nurses need
to adjust their care according to the familys way of functioning
and be prepared for the fact that working with some families is
more demanding and the outcomes achieved are less optimal.
Source: Davies et al. (1995), reference 17.
Nurses, and all palliative care providers, must remember in the experience and to acknowledge their contributions.
that each family is unique and comes with its own life story Most importantly, nurses must realize that each family is
and circumstances; listening to their story is central to under- doing the best it can. Nurses must sensitively, creatively, and
standing the family. There may be threads of commonality, but patiently support families as they encounter one of the great-
there will not be duplicate experiences. Nurses must assist est challenges families must facethe transition of fading
family members to recognize the essential role they are playing away.
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29o] Patricia Berry and Julie Grife
Planning for the Actual Death

There is a sweetness to being there when someone dies, as I was with my father. I held his hand as
he died and will never forget how warm his hand was, even after he was gone. The veil between this
life and the next, I believe, is thin. I sensed his spirit leave his body but it remained in the room
long after he had died, as if he was trying to say to me, Marsha, it was my time and I am now in a
better place. As an obstetrics nurse, I have witnessed many births but few deaths, but am struck by
the similarities between them. Birth and deaththe beginnings and endings we all experience as
humansare indeed sacred events.A daughter
Key Points Issues and needs at the time of death are exceedingly important
The care of patients and families near to death and afterward is an and, at the same time, exceedingly personal. Although the phys-
important nursing functionarguably one of the most important. iology of dying may be the same for most expected deaths, the
There are often no dress rehearsals; nurses and other health care psychological, spiritual, cultural, and family issues are as unique
professionals often only have one chance to get it right. and varied as the patients and families themselves. As death
Aggressive management of symptoms remains a priority as nears, the goals of care must be discussed and appropriately
death approaches. redened. Some treatments may be discontinued, and symp-
As the dying person nears death, the goals of care often change with toms may intensify, subside, or even appear anew. Physiological
patient and family needs, desires, and perspectives, providing a changes as death approaches must also be dened, explained,
different experience for everyone. and interpreted to the patient, whenever possible, as well as to
Care of the body after death, including honoring rituals and the patients family, close others, and caregivers. The nurse occu-
individual requests, can clearly communicate to the family that the pies a key position in assisting patients family members at the
person who died was indeed important and valued. time of death by supporting or suggesting death rituals, caring
for the body after death, and facilitating early grief work. Most
of the focus on death and dying in the past has been on dying in
general, making the need for a chapter focused specically on
the actual death even more important.
Terminally ill persons are cared for in a variety of settings,
including home settings with hospice care or traditional home
care, hospice residential facilities, nursing homes, assisted living
facilities, hospitals, intensive care units, prisons, and group
homes. Deaths in intensive care settings may present special
challenges, such as restrictive visiting hours and lack of space and
less privacy for familiesshortcomings that may be addressed
by thoughtful and creative nursing care. Likewise, death in a
nursing home setting may also offer unique challenges. Regard-
less of the setting, good management can minimize distressing
symptoms and maximize quality of life. Families can be sup-
ported in a way that optimizes use of valuable time and lessens
distress during the bereavement period. Like it or not, health
professionals only have one chance to get it right when car-
ing for dying persons and their families as death nears. In
other words, there is no dress rehearsal for the time surround-
ing death; extensive planning ensures the least stressful and
best possible outcome for all involved.
The patients family is especially important as death nears.
Family members may become full- or part-time caregivers;
561
daughters and sons may nd themselves in a position to par- close attention. Patients experience total and profound depen-
ent their parents; and family issues, long forgotten or ignored, dency at this stage of their illness. Families are often called
may surface. Although family is often thought of in tradi- upon to assume total caregiving duties, often disrupting their
tional terms, a family may take on several forms and con- own responsibilities for home, children, and career. Although
figurations. For purposes of this chapter, the definition of there may be similarities, patients and families experience this
family recognizes that many patients have nontraditional time through the lens of their own perspective and form their
families and may be cared for by a large extended entity, such own unique meaning.
as a church community, a group of supportive friends, or the Some authors suggest theories and guidelines as the basis
staff of a health care facility. Family is dened broadly to for establishing and maintaining meaningful, helpful, and
include not only persons bound by biology or legal ties but therapeutic relationships with patients or clients and their
also those whom the patient denes or who dene themselves families. One example is Carl Rogers theory of helping rela-
as close others or who function for the patient in familistic tionships, in which he proposed that the characteristics of a
ways. These functions can include nurturance; intimacy; eco- helping relationship are empathy, unconditional positive regard,
nomic, social, and psychological support in times of need; and genuineness.10 These characteristics, dened later as part
support in illness (including dealing with those outside the of the nurses approach to patients and families, are essential
family); and companionship.1,2 in facilitating care at the end of life. To this may be added
The research regarding uncontrolled symptoms at the end attention to detail, because this additional characteristic is
of life is misleading. It is most often performed in palliative essential for quality palliative care.11,12 Readers are urged to con-
care units or other settings dedicated to end-of-life care, in sider the following characteristics in the context of their own
which the goals of care are focused on ensuring maximal practices, as a basis for facilitating and providing supportive
symptom management. However, most studies demonstrate relationships:
that the majority of people do not have a death in which
Empathy: the ability to put oneself in the other per-
symptoms are well managed.3,4 Up to 52% of persons have
sons place, trying to understand the patient or
refractory symptoms at the very end of life that, at times,
client from his or her own frame of reference; it also
require terminal sedation.5 Dyspnea may worsen as death
requires the deliberate setting aside of ones own
approaches. The notion of a nal crescendo of pain is sup-
frame of reference and bias.
ported in some studies and not in others. Many patients
Unconditional positive regard: a warm feeling toward
experience a higher frequency of noisy and moist breathing,
others, with a nonjudgmental acceptance of all they
urinary incontinence and retention, restlessness, agitation,
reveal themselves to be; the ability to convey a sense
delirium, and nausea and vomiting.6,7 Less frequently, symp-
of respect and esteem at a time and place in which it
toms such as sweating, myoclonus, and confusion have been
is particularly important to do so.
reported.8
Genuineness: the ability to convey trustworthiness
Ventafridda and colleagues8 reported that, although most
and openness that is real rather than a professional
patients (91.5%) die peacefully, 8.5% experience symptoms
facade; also the ability to admit that one has limita-
requiring additional intervention in the nal 24 hours, such as
tions, makes mistakes, and does not have all
hemorrhage or hemoptysis (2%), respiratory distress (2%),
the answers.
restlessness (1.5%), pain (1%), myocardial infarction (1%), and
Attention to detail: the learned and practiced ability
regurgitation (1%). The wide variation in frequency of symp-
to think critically about a situation and not make
toms and reported good deaths may result from differing
assumptions. The nurse, for example, discusses chal-
populations and sites of care (e.g., home, specialized palliative
lenging patient and family concerns with colleagues
care unit, inpatient hospice), differing measurement protocols
and other members of the interdisciplinary team.
or instruments, and the participants cultural variations in
The nurse considers every what if before making
reporting symptoms and approaching death. In most studies,
a decision and, in particular, before making any
symptoms requiring maximum diligence in assessment, pre-
judgment. Finally, the nurse is constantly aware of
vention, and aggressive treatment during the nal day or two
how his or her actions, attitudes, and words may be
before death were respiratory tract secretions, pain, dyspnea,
interpretedor misinterpretedby others.11
restlessness, and agitation.7,9 Some authors emphasized that
persons with cognitive impairment require specic attention The events and interactionspositive as well as negative
to symptoms, especially as death nears.9 The nurse plays a key at the bedside of a dying person set the tone for the patients
role in educating family members and other caregivers about care and form lasting memories for family members. The time
the assessment, treatment, and continual evaluation of these of death and the care received by both the individual who has
symptoms. died and the family members who are present are predomi-
Regardless of individual patient and family needs, attitudes, nant aspects of the survivors memories of this momentous
and unnished business, the nurses professional approach event.13 Approaching patients and families with a genuine open-
and demeanor at the time near death is crucial and worthy of ness characterized by empathy and positive regard eases the
Planning for the Actual Death 563
way in making this difcult time meaningful, individualized, social worker is initiated. A history of how the patients health
and deeply profound. care status evolved from diagnosis to the present is reviewed.
This chapter discusses some key issues surrounding the death The family is presented with the natural course of the disease.
itself, including advanced planning, the changing focus of care Choices on how care may proceed in the future are reviewed.
as death nears, common signs and symptoms of death and Guidance or support for those choices is provided based on
their management, and care of the patient and family at time existing data and clinical experience with the particular dis-
of death. It concludes with two case examples illustrating the ease in relation to the current status of the patient. If no con-
chapters content. sensus for the needed decisions occurs, decision-making is
postponed. Third-party support by a trusted individual or
consultant may then be enlisted. Personal fundamental values
o] of the patient, family, and physician should be recognized and
Advanced Planning: Evolving Choices protected throughout this process.14
and Goals of Care Decisions by patients and families cross the spectrum of
care. They range from continuing treatment for the actual
Health care choices related to wellness are generally viewed disease, such as undergoing chemotherapy or renal dialysis
as clearcut or easy. We have an infection, we seek treatment, or utilization of medications, to initiating cardiopulmonary
and the problem resolves. Throughout most of the lifespan, resuscitation (CPR). The health care provider may work
medical treatment choices are obvious. As wellness moves with the patient and family, making care decisions for spe-
along the health care continuum to illness, choices become cific treatments and timing treatment discontinuance within
less clear and consequences of choices have a signicantly greater a clear and logical framework. A goal-setting discussion
impact. may determine a patients personal framework for care,
Many end-of-life illnesses manifest with well-known and such as
well-documented natural courses. Providing the patient and
Treatment and enrollment in any clinical studies for
family with information on the natural course of the disease
which I am eligible
at appropriate intervals is a critical function of health care
Treatment as long as statistically there is a greater
providers such as nurses. Providing an opening for discussion,
than 50% chance of response
such as, Would you like to talk about the future? Do you
Full treatment as long as I am ambulatory and able to
have any concerns that I can help you address? or It seems
come to the clinic or ofce
you are not as active as you were before, may allow a much-
Treatment only of xable conditions such as infec-
needed discussion of fears and concerns about impending death.
tions or blood glucose levels
Family members may request information that patients do not
Treatment only for controlling symptomatic aspects
wish to know at certain points in time. With the patients per-
of disease
mission, discussions with the family may occur in the patients
absence. Family members may also need coaching to initiate Once a goal framework has been established with the
end-of-life discussions with the patient. End-of-life goal set- patient, the appropriateness of interventions such as CPR,
ting is greatly enhanced when the patient is aware of the sup- renal dialysis, or intravenous antibiotics is clear. For instance,
port of family. if the patient states a desire for renal dialysis as long as trans-
End-of-life care issues should always be discussed with portation to the clinic is possible without the use of an ambu-
patients and family members. The competent patient is always lance, the endpoint of dialysis treatment is quite clear. At this
the acknowledged decision-maker. The involvement of fam- point, the futility of CPR would also be apparent. Allowing a
ily ensures maximal consensus for patient support as deci- patient to determine when the treatment is a burden that is
sions are actually implemented. Decisions for patients who unjustied by his or her value system, and communicating this
lack decision-making capacity should be made by a consen- determination to family and caregivers, is perhaps the most
sus approach, using family conference methodology. If docu- pivotal point in management of the patients care. Table 291
ments such as a durable power of attorney for health care or a suggests a format for an effective and comprehensive family
living will are available, they can be used as a guide for exam- conference.
ining wishes that inuence decision-making and goal-setting.
The decision-maker, usually the person named as health care
power of attorney (HCPOA) or the patients primary family o]
members, should be clearly identified. This approach may Changing the Focus of Care as Death Nears
also be used with patients who are able to make their own
decisions. Vital Signs
To facilitate decision-making, a family conference involv-
ing the decision makers (decisional patient, family members, As nurses, we derive a good deal of security in performing the
and the HCPOA), the patients physician, nurse, chaplain, and ritual of measurement of vital signs, one of the hallmarks of
Table 291
Family Conference
I. Why: Clarify goals in your own mind.

II. Where: Provide comfort, privacy, circular seating.
III. Who: Include legal decision maker/health care power of attorney; family members; social support; key health care professionals.
IV. How:
A. Introduction
1. Introduce self and others.
2. Review meeting goals: State meeting goals and specic decisions.
3. Establish ground rules: Each person will have a chance to ask questions and express views; no interruptions; identify legal
decision-maker, and describe importance of supportive decision-making.
B. Review medical status
1. Review current status, plan, and prognosis.
2. Ask each family member in turn for any questions about current status, plan, and prognosis.
3. Defer discussion of decision until the next step.
C. Family discussion with decisional patient
1. Ask patient, What decision(s) are you considering?
2. Ask each family member, Do you have questions or concerns about the treatment plan? How can you support the patient?
D. Family discussion with nondecisional patient
1. Ask each family member in turn, What do you believe the patient would choose if he (or she) could speak for himself
(or herself )?
2. Ask each family member, What do you think should be done?
3. Leave room to let family discuss alone.
4. If there is consensus, go to V; if no consensus, go to E.
E. When there is no consensus:
1. Restate goal: What would the patient say if he or she could speak?
2. Use time as ally: Schedule a follow-up conference the next day.
3. Try further discussion: What values is your decision based on? How will the decision affect you and other family members?
4. Identify legal decision-maker.
5. Identify resources: minister/priest; other physicians; ethics committee.
V. Wrap-up
1. Summarize consensus, decisions, and plan.
2. Caution against unexpected outcomes.
3. Identify family spokesperson for ongoing communication.
4. Document in the chart who was present, what decisions were made, follow-up plan.
5. Approach discontinuation of treatment as an interdisciplinary team, not just as a nursing function.
6. Continuity: Maintain contact with family and medical team; schedule follow-up meetings as needed.
VI. Family dynamics and decisions
1. Family structure: Respect the family hierarchy whenever possible.
2. Established patterns of family interaction will continue.
3. Unresolved conicts between family members may be evident.
4. Past problems with authority gures, doctors, and hospitals affect the process; ask specically about bad experiences in the past.
5. Family grieving and decision-making may include
Denial: False hopes.
Guilt: Fear of letting go.
Depression: Passivity and inability to decide; or anger and irritability.
Source: Adapted from Ambuel & Weissman (2001), reference 50. Copyright 2001, Medical College of Wisconsin, Inc.
nursing care. When death is approaching, we need to question Articial Fluids

the rationale for measuring vital signs. Are interventions
going to change if it is discovered that the patient has experi- The issue of articial hydration is emotional for many patients
enced a drop in blood pressure? If the plan of care no longer and families because of the role that giving and consuming u-
involves intervening in changes in blood pressure and pulse ids plays in our culture. When patients are not able to take u-
rate, the measurements should cease. The time spent taking ids, concern surfaces among caregivers. A decision must be
vital signs can then be channeled to assessment of patient reached regarding the appropriate use of uids within the con-
comfort and provision of family support. Changes in respira- text of the patients framework of goals. Beginning articial
tory rate are visually noted and do not require routine moni- hydration is a relatively easy task, but the decision to stop is
toring of rates, unless symptom management issues develop generally much more problematic given the emotional impli-
that could be more accurately assessed by measurement of cations. Ethical, moral, and most religious viewpoints state that
vital signs. The measurement of body temperature using a there is no difference between withholding and withdrawing a
noninvasive route should continue on a regular basis until treatment such as articial hydration. However, the emotional
death, allowing for the detection and management of fever, a response attached to withdrawing a treatment adds a world of
frequent symptom that can cause distress and may require difference to the decision to suspend. It is therefore much less
management. burdensome to not begin treatment, if this decision is accept-
Fever often suggests infection. As death approaches, goal able in light of the specic patient circumstances.20
setting should include a discussion of the nontreatment of infec- Most patients and families are aware that, without uids,
tion. Indications for treatment of infection are based on the death will occur quickly. The literature suggests that uids
degree of distress and patient discomfort.15 Pharmacological should not be routinely administered to dying patients, nor
management of fever should be available with antipyretics, automatically withheld from them. Instead, the decision should
including acetaminophen, and nonsteroidal antiinammatory be based on careful, individual assessment. Zerwekh21 suggested
drugs for all patients. Ice packs, alcohol baths, and cooling consideration of the following questions when the choice to
blankets should be used cautiously, because they often cause initiate or continue hydration is evaluated:
more distress than the fever itself.16
Is the patients well-being enhanced by the overall
Fever may also suggest dehydration. As with the manage-
effect of hydration?
ment of fever, interventions are guided by the degree of dis-
Which current symptoms are being relieved by arti-
tress and patient discomfort. The appropriateness of beginning
cial hydration?
articial hydration for the treatment of fever is based on indi-
Are other end-of-life symptoms being aggravated by
vidual patient assessment.
the uids?
Does hydration improve the patients level of con-
Cardiopulmonary Resuscitation sciousness? If so, is this within the patients goals
and wishes for end-of-life care?
Patients and family members may need to discuss the issue of
Does hydration appear to prolong the patients sur-
the futility of CPR when death is expected from a terminal ill-
vival? If so, is this within the patients goals and
ness. Developed in the 1960s as a method of restarting the
wishes for end-of-life care?
heart in the event of sudden, unexpected clinical death, CPR
What is the effect of the infusion technology on the
was originally intended for circumstances in which death was
patients well-being, mobility, and ability to interact
unexpected or accidental. It is not indicated in certain situa-
and be with family?
tions, such as cases of terminal irreversible illness where death
What is the burden of the infusion technology on
is not unexpected; resuscitation in these circumstances may
the family in terms of caregiver stress, nance? Is it
represent an active violation of a persons right to die with
justied by benet to the patient?
dignity.17,18
Over the years, predictors of the success of CPR have become A study by Fainsinger and Bruera22 suggested that, although
apparent, along with the predictors of the burden of CPR. some dying patients may actually benet from dehydration,
In general, a poor outcome of CPR is predicted in patients others may manifest symptoms such as confusion or opioid
with advanced terminal illnesses, patients with dementia, and toxicity that can be corrected or prevented by parenteral hydra-
patients with poor functional status who depend on others for tion. In any case, the uniqueness of the individual situation, the
meeting their basic care needs. Poor outcomes or physical goals of care, and the comfort of the patient must always be con-
problems resulting from CPR include fractured ribs, punc- sidered when this issue is addressed.23
tured lung, brain damage if anoxia has occurred for too long, Terminal dehydration refers to the process in which the
and permanent unconsciousness or persistent vegetative dying patients condition naturally results in a decrease in uid
state.19 Most importantly, the use of CPR negates the possibil- intake. A gradual withdrawal from activities of daily living
ity of a peaceful death. This is considered the gravest of poor may occur as symptoms such as dysphagia, nausea, and fatigue
outcomes. become more obvious. Families commonly ask whether the
patient will be thirsty as fluid intake decreases. In a study at tivated, or turned off, so that there will be no interference
St. Christophers Hospice in Sydenham, England, although from the device at the time of death. Patients with ICDs who
patients reported thirst, there was no correlation between thirst enter a hospice or palliative care program with diagnoses such
and hydration, resulting in the assumption that articial hydra- as advanced terminal cancer or end-stage renal disease and
tion to relieve symptoms may be futile.24 Articial hydration have decided to stop dialysis are candidates for such consider-
has the potential to result in uid accumulation, resulting in ation.
distressful symptoms such as edema, ascites, nausea and vom- Patients with ICDs have been instructed to carry a wallet
iting, and pulmonary congestion. identication card at all times that provides the model and
Does articial hydration prolong life? Smith25 cited two stud- serial number of the implanted device.28 The identication
ies that reported longer survival times with no articial hydra- card will also have the name of the physician to contact for
tion. Health care providers need to assist patients and family assistance. Deactivating the ICD is a simple, noninvasive proce-
members to refocus on the natural course of the disease and dure. Standard practice calls for the patient to sign a consent
the notion that the patients death will be caused by the dis- form. The device is tested after it is turned off to ensure that it
ease, not by dehydration, a natural occurrence in advanced ill- is no longer operational, and the test result is placed in the
ness and dying. Nurses may then assist families in dealing with patient record. Patients who are at peace with their impending
symptoms caused by dehydration. death nd this procedure important to provide assurance that
Dry mouth, a consistently reported distressing symptom of death indeed will be quiet and easy, when it does occur.
dehydration, can be relieved with sips of beverages, ice chips,
or hard candies.26 Another simple comfort measure for dry Corticosteroids in Patients with
mouth is spraying normal saline into the mouth with a spray Intracranial Malignancy
bottle or atomizer. (Normal saline is made by mixing one tea-
spoon of table salt in a quart of water.) Meticulous mouth care In most cases, the patient with an intracranial malignancy will
must be administered to keep the patients mouth clean. Fam- be receiving a corticosteroid such as dexamethasone to control
ily members can be instructed to anticipate this need. The headaches and seizures caused by intracranial swelling. When
nurse can facilitate this care by ensuring that the necessary the patient is nearing death and is no longer able to swallow,
provisions are on hand to assist the patient. the corticosteroids may be discontinued with minimal or no
tapering.29 Discontinuation of the corticosteroid may lead to
Medications increased cerebral edema, and, consequently, headache and
progressive neurological dysfunction.29 Addition or adjust-
Medications unrelated to the terminal diagnosis are generally ment of analgesics and anticonvulsant medications may be
continued as long as their administration is not burdensome. needed for the patients continued comfort.
When swallowing pills becomes too difcult, the medication A patient who is still able to swallow medications may also
may be offered in a liquid or other form if available, consider- request that treatment with corticosteroids be stopped because
ing patient and family comfort. Continuing medications, how- of continued deterioration and poor quality of life. Should this
ever, may be seen by some patients and families as a way of occur, the drug can be tapered, and at the same time an oral
normalizing daily activities and therefore should be supported. anticonvulsant medication can be increased. Careful assessment
Considerable tact, kindness, and knowledge of the patient and and control of headache and discomfort should be done twice a
family are needed in assisting them to make decisions about day, preferably by the same person. Resumption of the drug at
discontinuing medications. any point is always an option that should be offered to the
Medications that do not contribute to daily comfort should patient and family if the need becomes apparent.27,29
be evaluated on an individual basis for possible discontinuance.
Medications such as antihypertensives, replacement hormones, Renal Dialysis
vitamin supplements, iron preparations, hypoglycemics, long-
term antibiotics, antiarrhythmics, laxatives, and diuretics, unless Renal dialysis is a life-sustaining treatment, and as death
they are essential to patient comfort, can and should be discon- approaches, it is important to recognize and agree on its limita-
tinued unless doing so would cause symptoms or discomfort.27 tions. Discontinuation of dialysis should be considered in the
Customarily, the only drugs necessary in the nal days of life following cases30:
are analgesics, anticonvulsants, antiemetics, antipyretics, antic-
Patients with acute, concurrent illness, who, if they
holenergic medications, and sedatives.27
survive, will be burdened with a great deal of dis-
ability as dened by the patient and family
Implantable Cardioverter Debrillator Patients with progressive and untreatable disease or
disability
Implantable cardioverter debrillators (ICDs) are used to
Patients with dementia or severe neurological decit
prevent cardiac arrest due to ventricular tachycardia or ventri-
cular brillation. Patients with ICDs who are dying of another There is general agreement that dialysis should not be used
terminal condition may choose to have the debrillator deac- to prolong the dying process.31 The time between discontinuing
dialysis and death varies widely, from a matter of hours or days of the signs and symptoms associated with decreasing oxygen
(for patients with acute illnesses, such as those described earlier) concentrations can assist the nurse in guiding the family as
to days, weeks, or even longer if some residual renal function death nears.35 As oxygen saturation drops below 80%, signs
remains.30,31 Opening a discussion about the burden of treat- and symptoms related to hypoxia appear. As the dying process
ment, however, is a delicate task. There may be competing proceeds, special issues related to normalizing the dying pro-
opinions among the patient, family, and even staff about the cess for the family, symptom control, and patient and family
tolerability or intolerability of continuing treatment. The nurse support present themselves. Table 292 summarizes the physi-
who sees the patient and family on a regular basis may be the ological process of dying and suggests interventions for both
most logical person to recognize the discrete changes in status. patients and families.
Gently validating these observations may open a much-needed As the imminently dying person takes in less uid, third-
discussion regarding the goals of care. spaced uids, clinically manifested as peripheral edema, acites,
The discussions and decisions surrounding discontinua- or pleural effusions, may be reabsorbed. Breathing may become
tion or modication of treatment are never easy. Phrases such easier, and there may be less discomfort from tissue distention.
as, There is nothing more that can be done or We have tried Accordingly, as the person experiences dehydration, swelling is
everything have no place in end-of-life discussions with often reduced around tumor masses. Patients may experience
patients and families. Always reassure the patient and family transient improvements in comfort, including increased mental
membersand be prepared to follow throughthat you will status and decreased pain. The family needs a careful and com-
stand by them and do all you can to provide help and compassionate explanation regarding these temporary improve-
fort.32 This is essential to ensure that palliative care is not inter- ments and encouragement to make the most of this short but
preted as abandonment. potentially meaningful time.
There are multiple patient and family educational tools
available to assist families in interpreting the signs and symp-
o] toms of approaching death (Figure 291). However, as with all
Common Signs and Symptoms of Imminent aspects of palliative care, consideration of the individual per-
Death and Their Management spective and associated relationships of the patient or family
member, the underlying disease course trajectory, anticipated
There usually are predictable sets of processes that occur dur- symptoms, and the setting of care is essential for optimal care
ing the nal stages of a terminal illness due to gradual hypoxia, at all stages of illness, but especially during the nal days and
respiratory acidosis, metabolic consequences of renal failure, hours.
and the signs and symptoms of hypoxic brain function.5,33,34
These processes account for the signs and symptoms of immi-
nent death and can assist the nurse in helping the family plan o]
for the actual death. Care at the Time of Death, Death Rituals,
The following signs and symptoms provide cues that death and Facilitating Early Grieving
is only days away4,5,33:
At the time of death, the nurse has a unique opportunity to
Profound weakness (patient is usually bedbound
provide information helpful in making decisions about organ
and requires assistance with all or most care)
and body donation and autopsy. In addition, the nurse can
Gaunt and pale physical appearance (most common
support the familys choice of death rituals, gently care for the
in persons with cancer if corticosteroids have not
body, assist in funeral planning, and facilitate the early process
been used as treatment)
of grieving.
Drowsiness and/or a reduction in awareness, insight,
Family members needs around the time of death change,
and perception (often with extended periods of
just as the goals of care change. During this important time,
drowsiness, extreme difculty in concentrating,
plans are reviewed and perhaps rened. Special issues affecting
severely limited attention span, inability to cooperate
the time of death, such as cultural inuences, decisions regard-
with caregivers, disorientation to time and place, or
ing organ or body donation, and the need for autopsy, are also
semicomatose state)
reviewed.
Increasing lack of interest in food and uid
Under U.S. federal law, if death occurs in a hospital setting,
with diminished intake (only able to take sips of
staff must approach the family decision-maker regarding the
uids)
possibility of organ donation.37 Although approaching fam-
Increasing difculty in swallowing oral medications
ily at this time may seem onerous, the opportunity to assist
During the nal days, these signs and symptoms become another is often comforting. Some hospital-based palliative
more pronounced, and, as oxygen concentrations drop, new care programs include information about organ donation
symptoms also appear. Measurement of oxygen concentration in their admission or bereavement information. Readers are
in the dying person is not advocated, because it adds discom- urged to review their own organizations policies and proce-
fort and does not alter the course of care. However, knowledge dures.
Table 292
Symptoms in the Normal Progression of Dying and Suggested Interventions
Symptoms Suggested Interventions
Early Stage
Sensation/Perception
Impairment in the ability to grasp ideas and reason; Interpret the signs and symptoms to the patient (when
periods of alertness along with periods of disorientation appropriate) and family as part of the normal dying process;
and restlessness are also noted for example, assure them the patients seeing and even talking
to persons who have died is normal and often expected
Urge family members to look for metaphors for death in
speech and conversation (e.g., talk of a long journey, needing
maps or tickets, or in preparing for a trip in other ways)36 and
using these metaphors as a departure point for conversation
with the patient
Urge family to take advantage of the patients periods of lucidity
to talk with patient and ensure nothing is left unsaid
Encourage family members to touch and speak slowly and
gently to the patient without being patronizing
Maximize safety; for example, use bedrails and schedule people
to sit with the patient
Some loss of visual acuity Keep sensory stimulation to a minimum, including light,
sounds, and visual stimulation; reading to a patient who has
enjoyed reading in the past may provide comfort
Increased sensitivity to bright lights while other senses, Urge the family to be mindful of what they say over the
except hearing, are dulled patient, because hearing remains present; also continue to urge
family to say what they wish not to be left unsaid
Cardiorespiratory
Increased pulse and respiratory rate Normalize the observed changes by interpreting the signs and
Agonal respirations or sounds of gasping for air without symptoms as part of the normal dying process and ensuring
apparent discomfort the patients comfort
Apnea, periodic, or Cheyne-Stokes respirations Assess and treat respiratory distress as appropriate
Inability to cough or clear secretions efciently, resulting in Assess use and need for parenteral uids, tube feedings, or
gurgling or congested breathing (sometimes referred to as hydration. (It is generally appropriate to either discontinue or
the death rattle) greatly decrease these at this point in time.)
Reposition the patient in a side-lying position with the head of
the bed elevated
Suctioning is rarely needed, but when appropriate, suction
should be gentle and only at the level of the mouth, throat, and
nasal pharynx
Administer anticholinergic drugs (transdermal scopolamine,
hyoscyamine) as appropriate, recognizing and discussing with
the family that they will not decrease already existing secretions.
Renal/Urinary
Decreasing urinary output, sometimes urinary incontinence Insert catheter and/or use absorbent padding
or retention Carefully assess for urinary retention, because restlessness can
be a related symptom
Musculoskeletal
Gradual loss of the ability to move, beginning with the legs, Reposition every few hours as appropriate
then progressing Anticipate needs such as sips of uids, oral care, changing of
bed pads and linens, and so on
(continued )
Table 292
Symptoms in the Normal Progression of Dying and Suggested Interventions (continued )
Symptoms Suggested Interventions
Late Stage
Sensation/Perception
Unconsciousness Interpret the patients unconsciousness to the family as part of
Eyes remain half open, blink reex is absent; sense of the normal dying process
hearing remains intact and may slowly decrease Provide for total care, including incontinence of urine
and stool
Encourage family members to speak slowly and gently to the
patient, with the assurance that hearing remains intact
Cardiorespiratory
Heart rate may double, strength of contractions decrease; Interpret these changes to family members as part of the
rhythm becomes irregular normal dying process
Patient feels cool to the touch and becomes diaphoretic Frequent linen changes and sponge baths may enhance comfort
Cyanosis is noted in the tip of the nose, nail beds, and
knees; extremities may become mottled (progressive
mottling indicates death within a few days); absence of a
palpable radial pulse may indicate death within hours
Renal/Urinary
A precipitous drop in urinary output Interpret to the family the drop in urinary output as a normal
sign that death is near
Carefully assess for urinary retention; restlessness can be a
related symptom
In any case, it is important to clarify specically with fam- Determining That Death Has Occurred
ily members what their desires and needs are at the time of
death. Do they wish to be present? Do they know of others who Death often occurs when health professionals are not present
wish to now say a nal goodbye? Have they said everything at the bedside or in the home. Regardless of the site of death, a
they wish to say to the person who is dying? Do they have any plan must be in place for who will be contacted, how the death
regrets? Are they concerned about anything? Do they wish pronouncement will be handled, and how the body will be
something could be different? Every person in a family has removed. This is especially crucial for deaths that occur out-
different and unique needs that, unless explored, can go unmet. side a health care institution.
Family members recall the time before the death and immedi- Death pronouncement procedures vary from state to state,
ately afterward with great acuity and detail. As mentioned ear- and sometimes from county to county within a state. In some
lier, there is no chance for a dress rehearsalwe only have the states, nurses can pronounce death; in others, they cannot. In
one chance to get it right and make the experience an indi- inpatient settings, the organizations policy and procedures
vidual and memorable one. are followed. In hospice home care, generally the nurse makes
Although an expected death can be anticipated with some a home visit, assesses the lack of vital signs, contacts the
degree of certainty, the exact time of death is often not pre- physician who verbally agrees to sign the death certicate, and
dictable. Death often occurs when no health care professionals then contacts the funeral home or mortuary. Local customs,
are present. Frequently, dying people seem to determine the the ability of a health care agency to ensure the safety of a
time of their own deathfor example, waiting for someone to nurse during the home visit, and provision for do-not-
arrive, for a date or event to pass, or even for family members resuscitate orders outside a hospital setting, among other
to leaveeven if the leave-taking is brief. For this reason, it is factors, account for wide variability in the practices and pro-
crucial to ask family members who wish to be present at the cedures surrounding pronouncement of death in the home.
time of death whether they have thought about the possibility Although practices vary widely, the police or coroner may
they will not be there. This opens an essential discussion regard- need to be called if the circumstances of the death were
ing the time of death and its unpredictability. Gently reminding unusual, were associated with trauma (regardless of the cause
family members of that possibility can assist them in prepar- of the death), or occurred within 24 hours of a hospital
ing for any eventuality. admission.38
Figure 291. Sample handout for families responsible for end-of-life care. (Courtesy of
Hospice Care of Boulder and Broomeld Counties, Colorado, June 2004.)

The practice of actual death pronouncement varies widely discussed along with the relevant nursing implications in
and is not often taught in medical school or residencies.38 The Table 293.
customary procedure is to, rst, identify the patient, then note Care of and respect for the body after death by nursing staff
the following39: should clearly communicate to the family that the person who
General appearance of the body died was indeed important and valued. Often, caring for the
Lack of reaction to verbal or tactile stimuli body after death provides the needed link between family
Lack of pupillary light reex (pupils will be xed members and the reality of the death, recognizing that everyone
and dilated) present at the time of death and soon after will have a different
Absent breathing and lung sounds experience and a different sense of loss. Many institutions no
Absent carotid and apical pulses (in some situa- longer require nursing staff to care for patients after death
tions, listening for an apical pulse for a full minute or perform postmortem care.42 Further, the only published
is advisable) resources related to postmortem care are a series of three articles
describing the procedure of last ofces published in a British
Documentation of the death is equally important and
journal in 1998.4345 In a 1999 rev sing textbooks, only
should be thorough and clear. The following guidelines are
26% covered this important aspect of nursing care.46 Family
suggested38,39:
members will long remember the actions of the nurse after the
Patients name and time of call death. A kind, gentle approach and meticulous attention to
Who was present at the time of death and at the detail are imperative.
time of the pronouncement Rituals that family members and others present nd com-
Detailed ndings of the physical examination forting should be encouraged. Rituals are practices within a
Date and time of death pronouncement (either pro- social context that facilitate and provide ways to understand
nouncement by the nurse or the time at which the and cope with the contradictory and complex nature of human
physician either assessed the patient or was notied) existence. They provide a means to express and contain strong
Who else was notied and whenfor example, emotions, ease feelings of anxiety and impotence, and provide
additional family members, attending physician, or structure in times of chaos and disorder.47 Rituals can take
other staff members many formsa brief service at the time of death, a special
Whether the coroner was notied, rationale, and preparation of the body as in the Orthodox Jewish tradition,
outcome, if known or an Irish wake, where, after paying respect to the person who
Special plans for disposition and outcome (e.g., has died, family and friends gather to share stories, food, and
organ or body donation, autopsy, special care drink.48 Of utmost importance, however, is to ensure that fam-
related to cultural or religious traditions) ily members see the ritual as comforting and meaningful. It is
the familys needs and desires that direct this activitynot the
Care of the Body After Death nurses. There are, again, no rules that govern the appropriate-
ness of rituals; rituals are comforting and serve to begin the
Regardless of the site of death, care of the body is an impor- process of healing and acceptance.
tant nursing function. In gently caring for the body, the nurse To facilitate the grieving process, it is often helpful to create
can continue to communicate care and concern for the a pleasant, peaceful, and comfortable environment for family
patient and family members and model behaviors that may members who wish to spend time with the body, according to
be helpful as the family members continue their important their desires and cultural or religious traditions. The nurse
grief work. Caring for the body after death also calls for an should consider engaging family members in after-death care
understanding of the physiological changes that occur. By and ritual by inviting them to either comb the hair or wash
understanding these changes, the nurse can interpret and dis- the persons hands and face, or more, if they are comfortable.
pel any myths and explain these changes to the family mem- Parents can be encouraged to hold and cuddle their baby or
bers, thereby assisting the family in making their own child. Including siblings or other involved children in rituals,
personal decisions about the time immediately following traditions, and other end-of-life care activities according to
death and funeral plans. their developmental level is also essential. During this time,
A time-honored and classic article regarding postmortem family members should be invited to talk about their loved
care, emphasized that, although postmortem care may be a rit- one and encouraged to reminiscevaluable rituals that can
ualized nursing procedure, the scientic rationale for the proce- help them begin to work through their grief.49
dure rests on the basics of the physiological changes that occur The family should be encouraged to touch, hold, and kiss
after death.40 These changes occur at a regular rate depending the persons body, as they feel comfortable. Parents may wish
on the temperature of the body at the time of death, the size of to clip and save a lock of hair as a keepsake. The nurse may
the body, the extent of infection (if any), and the temperature offer to dress the persons body in something other than a hos-
of the air. The three important physiological changesrigor pital gown or other nightclothes. Babies may be wrapped
mortis, algor mortis, and postmortem decompositionare snugly in a blanket. Many families choose to dress the body in
a favorite article of clothing before removal by the funeral devices. In home care settings, these can be placed in a plastic
home. It should be noted that, at times, when a body is being bag and given to the funeral home for disposal as medical
turned, air escapes from the lungs, producing a sighing waste or simply double-bagged and placed in the familys reg-
sound. Informing family members of this possibility is wise. ular trash. Placing a waterproof pad, diaper, or adult inconti-
Again, modeling gentle and careful handling of the body can nence brief on the patient often prevents soiling and odor as
communicate care and concern on the part of the nurse and the patients body is moved and the rectal and urinary bladder
facilitate grieving and the creation of positive and long-lasting sphincters relax. Packing of the rectum and vagina is consid-
memories. ered unnecessary, because not allowing these areas to drain
Postmortem care also includes, unless an autopsy or the increases the rate of bacterial proliferation that naturally
coroner is involved, removal of any tubes, drains, and other occurs.41
Table 293
Normal Postmortem Physiological Changes and Their Implications for Nursing
Change Underlying Mechanisms Nursing Implications
Rigor mortis Approximately 2 to 4 hours after death, adenosine In many cultures, the body is viewed within
phosphate (ATP) ceases to be synthesized due 2448 hours after death. Therefore, post-
to the depletion of glycogen stores. ATP is death positioning becomes of utmost
necessary for muscle ber relaxation, so the lack importance. In many cases, it is important to
of ATP results in an exaggerated contraction of be sure the eyelids and jaw are closed and den
the muscle bers that eventually immobilizes tures are in place in the mouth. (Rolling a towel
the joints. Rigor begins in the involuntary and placing it under the jaw often helps to
muscles (heart, gastrointestinal tract, bladder, keep it closed.) The position of the hands is
arteries) and progresses to the muscles of also important. Position all limbs in proper
the head and neck, trunk and lower limbs. After body alignment. If rigor mortis does occur, it
approximately 96 hours, however, muscle can often be massaged out by the funeral
chemical activity totally ceases, and rigor passes. director.41 Finally, by understanding this
Persons with large muscle mass (e.g., body physiology, the nurse can also reassure the
builders) are prone to more pronounced rigor family about the myth that due to rigor mortis,
mortis. Conversely, frail elderly persons and muscles can suddenly contract and the
persons who have been bed bound for long body can appear to move.
periods are less subject to rigor mortis.41
Algor mortis After the circulaton ceases and the hypothalamus The nurse can prepare family members for the
stops functioning, internal body temperature coolness of the skin to touch or the increased
drops by approximately 1 C or 1.8 F per moisture by explaining the changes that
hour until it reaches room temperature. As the happen after death. The nurse may also suggest
body cools, skin loses its natural elasticity. If a kissing the person on their hair instead of
high fever was present at death, the changes in their skin. The skin, due to loss of elasticity,
body temperature are more pronounced and becomes fragile and easily torn. If dressings
the person may appear to sweat after death. are to be applied, it is best to apply them
Body cooling may also take several more with either a circular bandage or paper tape.
hours.41 Handle the body gently as well, being sure to
not place traction on the skin.
Postmortem decomposition Discoloration and softening of the body are caused As the body is handled (e.g., while bathing and
or liver mortis largely by the breakdown of red blood cells dressing), the nurse informs the family
and the resultant release of hemoglobin that member about this normal change that
stains the vessel walls and surrounding tissue. occurs after death.
This staining appears as a mottling, bruising, or
both in the dependent parts of the body as well
as parts of the body where the skin has been
punctured (e.g., intravenous or chest tube
sites).41 Often this discoloration becomes
extensive in a very short time. The remainder
of the body has a gray hue. In cardiac-related
deaths, the face often appears purple in color
regardless of the positioning at or after death.41
Occasionally families, especially in the home care setting, nicating his wishes to the area emergency medical services.
wish to keep the persons body at home, perhaps to wait for Jamess symptoms were well controlled and he was able to get
another family member to come from a distance and to ensure out of the house with his wheelchair. Sometimes, a hospice
that everyone has adequate time with the deceased. If the family volunteer would come and take him out to his favorite park.
wishes the body to be embalmed, this is best done within 12 Although rapidly losing strength, he expressed a wish to go
hours. If embalming is not desired, the body can remain in the on a cruise with Ruth and his children.
home for approximately 24 hours before further decomposi-
tion and odor production occur. The nurse should suggest to Goals and framework of care: Although they believed it
the family that they make the immediate area cooler to slow to be inadvisable, the hospice staff chose to facilitate
down natural decomposition, either by turning down the fur- and honor Jamess wish despite his progressive illness.
nace or by turning up the air conditioning.41 Be sure, however, They advocated for him and his family with the cruise
to inform the funeral director that the family has chosen to line and remained in communication with the physi-
keep the body at home a little longer. Finally, funeral directors cian and nurse on the cruise ship.
are a reliable source of information regarding postdeath changes, James and his family had an incredible trip of a lifetime,
local customs, and cultural issues. according to James, but soon after their return he became
The care of patients and families near the time of death and increasingly weak, unable to swallow, and unable to breathe
afterward is an important nursing functionarguably one of without continuous positive airway pressure (CPAP).
the most important. As the following case studies are reviewed,
consider how the nurse interceded in a positive manner, mind- Goals and framework of care: The hospice staff revisited
ful of the changing tempo of care and the changing patient James goals in the context of his declining strength,
and family needs, desires, and perspectives. understanding that there might indeed be things James
wanted to accomplish before he died. They held a fam-
ily meeting with James, Ruth, and the children to
answer questions and discuss how his illness might
9=
progress. James made the decision to not use the CPAP
case study
any longer, and the hospice staff assured him that his
James, a 45-Year-Old Man with Amyotrophic
symptoms would be well controlled.
Lateral Sclerosis
James was a 45-year-old, self-employed investment banker The hospice provided volunteers who assisted James in
with a 2-year history of rapidly progressive amyotrophic lat- transitioning his clients to the new owner of his business. As
eral sclerosis (ALS). After unsuccessful treatment, including his illness worsened, his parents and siblings took turns com-
participation in clinical trials, James, with the blessing of his ing and staying with James and Ruth. This gave Ruth needed
wife, Ruth, and their adult children, decided to focus on respite from caregiving and James time alone with his
symptom management and ensuring the quality of his parentswhich had rarely happened in the pastas well as
remaining life. However, when his physician suggested hos- time alone with each of his siblings. The nurse was able to
pice, he resisted, claiming that hospice was synonymous inform the family when his death neared, so all of the family
with death, and, although he knew he was dying, he did not members were present, as James had wished, when he died.
feel the need to talk about it outside of his immediate fam- During the visit at the time of James death, Ruth helped the
ily. He also stated that he wanted time to sell his business nurse prepare James body for transportation to the mortu-
and ensure that his long-time clients had continuity. ary, even choosing to dress James in his favorite annel shirt.
His physician consulted the palliative care team at the The nurse and James wife, children, parents, and siblings
hospital where James had received care, and James and Ruth reected on how they had worked together and had empow-
agreed to meet with the palliative care clinical nurse special- ered each other so that they could make this difcult experi-
ist that day. ence James very own.
Goals and framework of care: Gentle and respectful Goals and framework of care: The goals of care changed
explanation of the available options and their meaning again to assisting James with accomplishing his nal
for care, rst understanding and then incorporating wishes and ensuring that his continued care needs were
James and his familys goals and needs. addressed. At the same time, James family began to
prepare for his death by participating in early grief
After meeting with the clinical nurse specialist, James and work.
Ruth agreed they would think about a referral to the local
hospice program. The following week, they enrolled and Critical Points
became acquainted with the hospice staff members who Coming to grips with death is a process and cannot
would be overseeing their care. James also decided to update be rushed. It is different for everyone.
his durable power of attorney for health care and to formalize The needs of James and his family were listened
his wish to not be resuscitated by wearing a bracelet commu- to, honored, and not questioned or challenged.
He and his family remained in charge and in ordered. Before it could be completed, Mrs. H became
control. unconscious and was admitted to the intensive care unit
Time-of-death ritualsi.e., bathing and dressing (ICU). The results showed a brain mass compounded by a
the bodycan often be comforting and memorable massive intracranial bleed.
for family members.
The care of a patient and family at end of life Goals and framework of care: Understanding the New
includes all family members, not just the immediate Findings
family. By supporting James entire family, comfort-
Comprehending the dramatic shift in the patients con-
ing memories were ensured.
dition, the extent of the disease, and the implications of the
o]
new findings was overwhelming to the family. Treating
staff also struggled with the new findings. Time was
needed. How much, though? How quickly could the
9= family be moved to decision-making concerning life
case study support for Mrs. H?
Mrs. H, a 40-Year-Old Woman with Cancer Clearly, a good deal of support would be needed for
of Unknown Origin the family and staff. The family was asked to gather and to
Mrs. H rst presented to her primary care physician after bring other supportive individuals who could assist them.
noticing a new mass under her arm. The mass was biopsied Thirty-six hours after the MRI was done, the family
and was determined to be an adenocarcinoma of unknown gathered to hear the status of Mrs. Hs condition and her
origin. Subsequent workup showed no evidence of disease prognosis. They were asked to consider what her wishes
elsewhere. Mammography, computed tomography, magnetic would be under the circumstances. Mrs. Hs advance
resonance imaging (MRI), chest radiography, and directive was reviewed; it clearly stated that she wished no
colonoscopy were negative. The biopsy slides were sent to advanced life support if meaningful recovery was not
another institution for review. After extensive review, it was believed possible. The family was immobilized by the
determined that her cancer most closely mimicked the breast situation. They were asked to appoint a family spokes-
in origin, and treatment was begun based on that knowledge. person who could meet the next morning with the attend-
The workup took approximately 3 weeks, a time of great anx- ing physician.
iety for the patient and her family. Goals and framework of care: Continuing the
Mrs. H settled into chemotherapy on a weekly basis; her DialogueAllowing for Time
husband and sister accompanied her to her treatment ses-
sions. She was employed by a local company who had pledged The next morning, the family spokesperson did not arrive
their full support to her in terms of job security and support to meet with the attending physician as planned. There were
by their staff for any needs. She was the mother of two chil- no phone calls from the family, and no communication from
dren in college. Mrs. H reported that life was full and good! them for 24 hours. At this point, the family spokesperson
Mrs. H asked for information on support programs. It was was contacted by Mrs. Hs nurse simply for the purpose of
difcult for her to nd appropriate group support, so she providing an update on Mrs. Hs condition and asking if
opted for individual counseling. She shared that she did not there were further questions. The reply was simply, Thank
believe the situation was going to have a positive outcome. you, no. The spokesperson shared with the nurse that the
She desperately wanted to have a kitchen table conversation family simply did not know what to do and were not ready
with her family but never felt successful in doing so. With the to come back to the hospital. They asked for more time. The
support of the nursing staff and social services staff, she set- ICU team agreed that, if there was no contact from the fam-
tled for completing her advanced directive and putting her ily by noon of the next day, Mrs. Hs oncologist, who had
wishes in writing. been present at the family meeting, would make the next
contact.
Goals and framework of care: Treat and See
The next morning, the entire family arrived at the hospital
Treatment continued for 6 months. No evidence of and asked to plan with the team the most dignied way to
disease was noted after 4 months. It was determined that remove Mrs. H from life support. They brought personal
after 1 more month, treatments would be stopped and sur- items, pictures of the family, their minister, and a special
veillance would begin. A feeling of relief and joy surrounded prayer to be read. The staff employed aggressive dyspnea
Mrs. H during her clinic visits. During her the last month of management for Mrs. H and removed her from life support
treatment, antiemetic treatment was noted to be more in the presence of her family. She died peacefully within
difficult, and dexamethasone was added to the treatment 30 minutes after removal from the ventilator. Surrounded by
regimen. the love of her family, who gave each other the support,
A month after her last treatment, Mrs. H presented to Mrs. H died, much in the way the nursing staff in the oncol-
clinic with a severe headache. An immediate MRI was ogy unit had heard her describe.
Critical Points 9. Hall P, Schroder C, Weaver L. The last 48 hours of life in long-term
care: A focused chart audit. J Am Geriatr Soc 2002;50:501506.
Sudden changes in trajectories of care require time
10. Rogers C. On Becoming a Person: A Therapists View of Psy-
for the family to adjust, particularly if the patient is
chology. Boston: Houghton Mifin, 1961.
no longer able to speak or make decisions. Allowing 11. Twycross R. Symptom Management in Advanced Cancer, 2nd
realistic time frames for this process is critical. ed. Oxan, UK: Radcliffe Medical Press, 1997.
Frameworks of care must be clear to the patient, 12. Du Boulay S. Cicely Saunders: Founder of the Modern Hospice
family, and all staff members involved in the Movement. London: Hodder and Stoughton, 1984.
patients care throughout the process of treatment. 13. Berns R, Colvin ER. The nal story: Events at the bedside of
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14. Karlawish HT, Quill T, Meier D (for the ACP-ASIM End of Life
Care Consensus Panel). A consensus-based approach to provid-
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Summary 15. Cleary JF. Fever and sweats. In: Berger AM, Portenoy RK, Weiss-
man DE. Principles and Practice of Palliative Care and Support-
Assisting and walking alongside dying patients and their fami- ive Oncology, 2nd ed. New York: Lippincott Williams & Wilkins,
lies, especially near and after death, is an honor and privilege. 2002:154167.
Nowhere else in the practice of nursing are we invited to be 16. Brody H, Campbell ML, Faber-Langendoen K, Ogle KS. With-
companions on such a remarkable journey as that of a dying drawing intensive life-sustaining treatment: Recommendations
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17. National Conference for Cardiopulmonary Resuscitation (CPR)
and cherished. Caring for dying patients and families is indeed
and Emergency Cardiac Care (ECC). Standards of CPR and
the essence of nursing. Take this responsibility seriously, under-
ECC. JAMA 1974;227:864866.
standing that, although it may be stressful and difcult at times, 18. Tomlinson T, Brody H. Sounding board: Ethics and communi-
it comes with personal and professional satisfaction beyond cation in do-not-resuscitate orders. N Engl J Med 1988;318:
measure. Listen to your patients and their families. They are the 4346.
guides to this remarkable and momentous journey. Listen to 19. McIntyre KM. Failure of predictors of CPR outcomes to predict
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approach their care with an acute attention to every detail. 20. Dunn H. Hard Choices for Loving People, 4th ed. Herndon, VA:
Theyin fact, all of usare counting on you. A & A Publishers, 2001.
21. Zerwekh J. Do dying patients really need IV uids? Am J Nurs
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IV
Spiritual Care
o]
30o] Elizabeth Johnston Taylor
Spiritual Assessment
I agree that spiritual support is very important during a serious illness, but I also believe that it is a
choice for the patients to make for themselves whether it be interactive with a professional caregiver.
Some people prefer an intimate, personal relationship with God and may not feel comfortable
revealing themselves. Others may welcome the genuine love and concern of others. It would have to
be approached with utmost sensitivity and knowledge of people and their relationship with God.
Spouse responding to a written survey
Key Points To solve any problem, one must rst assess what the problem
Spiritual assessment precedes effective spiritual caregiving. Because is. Consequently, the nursing process dictates that the nurse
palliative care patients and their family members use spiritual begin care with an assessment of the patients health needs.
coping strategies, and spiritual well-being can buffer the distress of Although palliative nurses are accustomed to assessing patients
dying, spiritual care is integral to palliative care. pain experiences, hydration status, and so forth, they less fre-
Numerous typologies identifying the dimensions of spirituality exist quently participate in assessing patients and family members
and provide guidance for what to address in a spiritual assessment. spirituality.
A two-tiered approach to spiritual assessment allows the nurse to Because spirituality is an inherent and integrating, and
rst conduct a supercial assessment to screen for spiritual often extremely valued, dimension for those who receive pal-
problems or needs. liative nursing care, it is essential that palliative care nurses
The most streamlined assessment strategy suggests asking How know to some degree how to conduct a spiritual assessment.
does your spirituality help you to live with your illness? and What This chapter reviews models for spiritual assessment, pres-
can I/we do to support your spiritual beliefs and practices? ents general guidelines on how to conduct a spiritual assess-
Spiritual assessment data allow diagnosis of a spiritual problem ment, and discusses what the nurse ought to do with data
or need and should be documented. from a spiritual assessment. These topics are prefaced by
arguments supporting the need for spiritual assessments,
descriptions of what spirituality looks like among the ter-
minally ill, and risk factors for those who are likely to experi-
ence spiritual distress. But first, a description of spirituality is
in order.
o]
What Is Spirituality?
A number of recent analyses of the concept of spirituality have

identied key aspects of this ethereal and intangible phenom-
enon.1 Conceptualizations of spirituality often include the fol-
lowing as aspects of spirituality: the need for purpose and
meaning, forgiveness, love and relatedness, hope, creativity, and
religious faith and its expression. A well-accepted denition
for spirituality authored by Reed2 proposed that spirituality in-
volves meaning-making through intrapersonal, interpersonal,
and transpersonal connection. A more recent denition that
incorporates themes found in nursing literature is Dossey
and Guzzettas3 description of a unifying force of a person;
the essence of being that permeates all of life and is manifested
581
582 Spiritual Care
in ones being, knowing, and doing; the interconnected- afterlife, beliefs about life belonging to God, and being born
ness with self, others, nature, and God/Life Force/Absolute/ again) will be important sources of comfort when they are
Transcendent (p. 7). dying.21
Usually, spirituality is differentiated from religionthe The above themes from research imply that attention to the
organized, codied, and often institutionalized beliefs and prac- spirituality of terminally ill patients and their caregivers is of
tices that express ones spirituality.1 As Dossey and Guzzettas3 utmost importance. That is, if patients spiritual resources
denition illustrates, care is often taken to allow for an open assist them to cope, and if imminent death precipitates height-
interpretation of what a person considers to be divine, or a tran- ened spiritual awareness and concerns, and if patients view their
scendent Other. Although health care literature frequently uses spiritual health as most important to their quality of life, then
phrases such as higher power in addition to God, demogra- spiritual assessment that initiates a process promoting spiritual
phers of religion nd that more than 90% of Americans believe health is vital to effective palliative care.
in God.4 Underscoring these theoretical reasons for spiritual assess-
The spiritual assessment methods introduced in this ment is a very pragmatic one: the mandate of the Joint Commis-
chapter are all influenced inherently by some conceptualiza- sion on Accreditation of Healthcare Organizations (JCAHO) to
tion of spirituality. Some, however, have questioned whether conduct a spiritual assessment for clients entering an approved
spiritual assessment is possible, given the broad, encompass- facility.22 The Joint Commission states that a spiritual assess-
ing definition typically espoused by nurses.56 Bash con- ment, at least, should determine the patients denomination,
tended that spirituality is an elastic term that cannot be beliefs, and what spiritual practices are important. They do
universally defined. Because a patients definition of spiritu- not stipulate how this assessment should be conducted, allow-
ality may differ from the nurses assumptions about it, Bash ing the institution to develop its own process.
argued that widely applicable tools for spiritual assessment But why should palliative care nurses be conducting spiritual
are impossible to design. It is important to note, therefore, assessments? Hunt and colleagues23 recognized that although
that the literature and methods for spiritual assessment pre- chaplains are the spiritual care experts, all members of a hospice
sented in this chapter are primarily from the United States team participate in spiritual caregiving. In surveying hospice
and United Kingdom, influenced most by Western Judeo- team members, Millison and Dudley24 found nurses are often
Christian traditions and peoples. Hence, they are most appli- the ones responsible for completing spiritual assessments.
cable to these peoples. Other nurse authors imply that nurses are pivotal in the pro-
cess of spiritual assessment.1,2528 Considering nurses frontline
position, coordination role, and intimacy with the concerns of
o] patients, the holistic perspective on care, and even their lack of
Why Is It Important for a Palliative Care Nurse religious cloaking, nurses are ideal professionals for complet-
to Conduct a Spiritual Assessment? ing a spiritual assessment.
However, nurses must recognize that they are not special-
Spiritual awareness increases as one faces an imminent ists in spiritual assessment and caregiving; they are generalists.
death.7 While some may experience spiritual distress or soul Most oncology and hospice nurses perceive that they do not
pain, others may have a spiritual transformation or experi- receive adequate training in spiritual assessment and care.2930
ence spiritual growth and health.810 There is mounting In fact, it is this lack of training, accompanied by role confu-
empirical evidence to suggest that persons with terminal ill- sion, lack of time, and other factors that nurses often cite as
nesses consider spirituality to be one of the most important barriers to completing spiritual assessments.3132 When a nurses
contributors to quality of life.11 For example, two studies assessment indicates need for further sensitive assessment and
measuring various domains of quality of life found spiritual specialized care, a referral to a specialist (e.g., chaplain, clergy,
well-being to rank highest in samples of hospice patients.1213 patients spiritual director) is in order.
McClain and colleagues14 observed that spiritual well-being
functioned to protect terminal cancer patients against end-
of-life despair. They found spiritual well-being to have mod- o]
erately strong inverse relationships with the desire for a How Does Spirituality Manifest Itself?
hastened death, hopelessness, and suicidal ideations. Reli-
gious beliefs and practices (e.g., prayer, beliefs that explain To understand how to assess spirituality, the palliative care
suffering or death) are also known to be valued and fre- nurse must know what to look for. What subjective and objec-
quently used as helpful coping strategies among those who tive observations would indicate spiritual disease or health? To
suffer and die from physical illness.1517 Family caregivers of approach an answer, it is helpful to consider two research
seriously ill patients also find comfort and strength from studies exploring qualitatively what are clients perceptions of
their spirituality that assists them to cope.1820 A national spiritual need. Hermann33 interviewed 19 hospice patients to
telephone survey of 1200 adults also confirmed that Ameri- determine what specically their spiritual needs were. The 29
cans project that their spiritual beliefs (e.g., beliefs in an resulting spiritual needs were categorized under the following
Spiritual Assessment 583
themes: need for involvement and control, need for compan- o]

ionship, need to nish business, need to experience nature, Spiritual Assessment Models
need for a positive outlook, as well as need for religion. Tay-
lor20 interviewed 28 cancer patients and family caregivers, Health care professionals from multiple disciplines offer mod-
some for whom death was imminent, and identied eight cat- els for spiritual assessment. Selected models from chaplaincy
egories of spiritual need. These spiritual needs included the and pastoral counseling, medicine (including psychiatry), and
need to: nursing will be presented here. Although some assessment
models have been published during the past few years, most
Relate to God or an Ultimate Other (e.g., the need to were developed in the 1990s, when the research about spiritual
believe God will or has healed, the need to remember
care began to proliferate.
Gods providence, the need to remember that there
is Someone out there looking out for me)
Have gratitude and optimism (e.g., the need to keep Chaplaincy/Pastoral Counseling
a positive outlook, to count ones blessings, or just
During the past several decades, as the eld of chaplaincy and
enjoy life)
pastoral counseling has advanced, there have been several mod-
Love others (e.g., to forgive or get right with oth-
els for spiritual assessment published. However, most discus-
ers, to return others kindnesses, to make the world
sions of spiritual assessment in this eld reect the ideas of the
a better place, to protect family members from
Christian psychologist Pruyser.37
witnessing the suffering from cancer)
Pruyser proposed seven dimensions or traits to spirituality.
Receive love from others (e.g., the need to feel val-
Each dimension can be considered a continuum, with negative
ued and appreciated by family, to know others are
and unhealthy versus positive and healthy ends. These dimen-
praying for you, or just being with others consid-
sions are presented in Table 301 with statements that termi-
ered to be family)
nally ill patients or their loved ones might make to illustrate
Review spiritual beliefs (e.g., wondering if religious
each end of the continuum. Where a patient is on these con-
beliefs are correct, thinking about the unfairness of
tinuums can change over time. Malony38 asserted that one
personal circumstances, or asking why? questions)
more dimension needs to be added to Pruysers seven, a trait
Create meaning, nd purpose for cancer and for
Malony labels openness in faith. That is, a positive, healthy
life (e.g., the need to get past asking why me?
sense of openness in faith allows an individual to not be rigid
and becoming aware of positive outcomes from ill-
or resistant to new ideas in his or her spiritual beliefs.
ness, lessening the frustration of not being able to
Although Pruyser and Malony acknowledge this model as
do meaningful work, or sensing that there is a rea-
being molded by Christian perspectives, much of the model
son for being alive)
still offers non-Christians insight into what spiritual dimen-
Sustain religious experience (e.g., reading spirit-
sions can encompass.
nurturing material, having quiet time to reect, or
Fitchett39 developed the 7 by 7 model for spiritual assess-
receiving a sacrament from a religious leader)
ment. In addition to reviewing seven dimensions of a person
Prepare for death (e.g., balancing thoughts about
(medical, psychological, psychosocial, family system, ethnic and
dying with hoping for health, cognitively creating a
cultural, societal issues, and spiritual dimensions), Fitchett
purpose for death, or making sure personal business
advances seven spiritual dimensions to include in an assess-
is in order).
ment: beliefs and meaning (i.e., mission, purpose, religious and
Dudley and colleagues34 found hospice spiritual assessment nonreligious meaning in life), vocation and consequences (what
forms often include more specic spiritual problems, such as persons believe they should do, what their calling is), experience
fear of death or abandonment, spiritual emptiness, unre- (of the divine or demonic) and emotion (the tone emerging
solved grief, unresolved past experiences, confusion or doubts from ones spiritual experience), courage and growth (the abil-
about beliefs, and the need for reconciliation, comfort, or ity to encounter doubt and inner change), ritual and practice
peace. (activities that make life meaningful), community (involvement
Although the terminology spiritual need may suggest a in any formal or informal community that shares spiritual
problem, spiritual needs can also be of a positive nature. For beliefs and practices), and authority and guidance (exploring
example, patients can have a need to express their joy about where or with whom one places trusts, seeks guidance).
sensing closeness to others, or have a need to pursue activities Using an approach less complex than Fitchetts, van der
that allow expression of creative impulses (e.g., artwork, music Poel40 offers ve general questions for organizing the assess-
making, writing). Although the following models for conduct- ment of an incurably ill patient: What is the place of God in
ing a spiritual assessment will provide more understanding of the patients life? What is the patients attitude toward self?
how spirituality manifests, the reader is referred to Taylor1 or How is the patients relationship with family and friends? What
Carpenito,35 or Higheld and Casons36 seminal article for fur- is the patients understanding of and interest in prayer?
ther concrete indicators of spiritual need. What is the patients attitude toward his or her religion? Van
584 Spiritual Care
Table 301
Pruysers Spiritual Dimensions
Negative, Less Positive, More

Spiritual Dimension Healthy Healthy
Awareness of the Holy or God When I hear the birds sing, they I feel very close to God now and am dependent
(sense of awe, reverence for that mock me; I see nothing sacred in on Gods help to face my death.
which is divine) natureor anything else.
Acceptance of Gods grace I dont need or deserve any help or Thank you for caring for me so tenderly;
and steadfast love (experience kindness; Ill handle things alone. you mirror God for me.
of God as benevolent and
unconditional in loving)
Being repentant and responsible Its not my fault I feel bitter. How can I deal with my situation better?
(openness to change, acceptance
of responsibility for own feelings
and behaviors)
Faith (open, committed, and There are some things in life Id be Ive enjoyed every minute of life! I try
positive attitude toward life) afraid to do. anything new.
Sense of providence (experience Where has God been for me? He left I trust that Gods will will be done in my life and
of Gods leadership and me when I got sick. dying.
direction)
Involvement in spiritual/religious Why should I have to ask for help I still feel connected to my church because I
community, and experience from my church? They dont bother know that they are praying for me.
of communion to even call me!
Flexibility and There is no reason for me to How I am choosing to die reects my respect for
commitment to living still live. Lets pull the plug the sacredness of my life; I have much to
an ethical life here. offer even while Im in the process of dying.
Sources: Malony (1993), reference 38 and Kloss (1988), reference 62.
der Poel does specify substatements for each of these questions, The Royal Free Interview Schedule developed in the United
but offers them in a tool that quanties (using ve-point Kingdom by King, Speck, and Thomas44 is a 212-page self-
response options) patient responses. report questionnaire. The tool showed acceptable reliability
Hospice chaplain Muncy41 assesses three dimensions of and various forms of validity when it was tested among 297
patients spirituality. First, patients self-understanding and persons, who were primarily hospital employees and church
attitudes about others are explored, since, in Muncys view, how members. Questionnaire items assess both spiritual and reli-
patients view self and others frequently portrays their view of gious understanding in life (1 item), religious/spiritual
God. Second, religious and spiritual history, including sense of beliefs (8 items), religious/spiritual practices (3 items), and
purpose, are assessed. Last, patients are asked about their spir- intense spiritual or near death experiences (6 items).
itual goals; this allows the clinician to discuss with the patient Response options for items include Likert scales, categorical
a plan for spiritual care. options, and space for answering open-ended questions.
Family physician T.A. Maugens45 offers the mnemonic
Medicine SPIRIT for remembering six components to cover during a
spiritual assessment, or history (to use Maugenss physician
A number of physicians have offered approaches to spiritual terminology). Spiritual belief system refers to religious afli-
assessment.4243 Most of these approaches bet the work of a ation and theology.Personal spirituality refers to the spiritual
physician or other health care professional who is needing to views shaped by life experiences that are unique to the individ-
screen for spiritual need in an efcient way. These approaches ual and not necessarily related to ones religion. Integration
generally involve asking about specied aspects of spirituality and involvement with a spiritual community reminds the cli-
during a history taking. To remember these aspects of spiritu- nician to assess for a patients membership and role in a religious
ality, many are organized to reect a mnemonic. Several of organization or other group that provides spiritual support.
these are summarized and illustrated in Table 302. Ritualized practices and restrictions are the behaviors and
Table 302
Spiritual Assessment: Mnemonics for Interviewing
Author Components (Mnemonic) Illustrative Questions

Maugens45 S (spiritual belief system) What is your formal religious afliation?
P (personal spirituality) Describe the beliefs and practices of your religion or spiritual system
that you personally accept. What is the importance of your
spirituality/religion in daily life?
I (integration with a spiritual Do you belong to any spiritual or religious group or community? What
community) importance does this group have to you? Does or could this group
provide help in dealing with health issues?
R (ritualized practices and restrictions) Are there specic elements of medical care that you forbid on the basis
of religious/spiritual grounds?
I (implications for medical care) What aspects of your religion/spirituality would you like me to keep in
mind as I care for you? Are there any barriers to our relationship
based on religious or spiritual issues?
T (terminal events planning) As we plan for your care near the end of life, how does your faith impact
on your decisions?
Anandarajah & H (sources of hope) What or who is it that gives you hope?
Hight46
O (organized religion) Are you a part of an organized faith group? What does this group do for
you as a person?
P (personal spirituality or spiritual What personal spiritual practices, like prayer or meditation,
practices) help you?
E (effects on medical care and/or Do you have any beliefs that may affect how the health care team cares
end-of-life issues) for you?
Puchalski F (faith) Do you have a faith belief? What is it that gives your life meaning?
I (import or inuence) What importance does your faith have in your life? How does your faith
belief inuence your life?
C (community) Are you a member of a faith community? How does this support you?
A (address) How would you like for me to integrate or address these issues in your
care?
lifestyle activities that inuence ones health. Implications for important or inuential this faith is (I), what faith community
medical care reminds the nurse to assess how spiritual beliefs or spiritual support group they participate in (C), and how
and practices inuence the patients desire and participation in the client would like the health/hospice care team to address
health care. Terminal events planning reminds the clinician to their spiritual needs (A). This mnemonic may be easier to
assess end-of-life concerns. These components of a spiritual recall, and is appropriate for the initial or standard spiritual
assessment are most appropriate for use in palliative care set- assessments.
tings; the mnemonic may be helpful for remembering them. Two other screening approaches that are very concise have
Anandarajah and Hight46 developed a simpler mnemonic been proposed by physicians Lo and colleagues,48 who sug-
for remembering aspects of a spiritual assessment: HOPE. H gested the following questions for use in palliative care set-
reminds the clinician to assess for sources of hope, strength, tings:
comfort, meaning, peace, love, and connection. O refers to
the patients organized religion, while P stands for personal Is faith/religion/spirituality important to you in
spirituality and practices. E prompts the clinician to assess this illness?
for spirituality effects on medical care and end-of-life deci- Has faith been important to you at other times in
sions. Again, the mnemonic may be stretched, but the parsi- your life?
mony of the assessment strategy is appreciated. Do you have someone to talk to about religious
Similarly, Puchalski47 proposed the mnemonic of FICA as a matters?
strategy for spiritual assessment. FICA prompts the clinician Would you like to explore religious matters
to assess to what faith and beliefs the patient has (F), how with someone?
586 Spiritual Care
Striving to have an even more streamlined spiritual assess- Assessment Using FICA
ment, Matthews and colleagues49 proposed initial spiritual F (faith)Pentecostal beliefs in God and Jesus. More spe-
assessments could be limited to asking Is your religion (or cic beliefs include good behavior in present life means
faith) helpful to you in handling your illness? and What can reward of Heaven in the after-life. God controls when
I do to support your faith or religious commitment? she will die. In the meantime, she is to live her life as a
testimony in praise of God.
I (import or inuence)This faith pervades her thinking
9= and feeling, gives her hope, and allows joyfulness.
case study C (community)Although she is used to attending Sun-
Ms. B, a Patient With Bone Cancer day services regularly at a local church, her terminal ill-
ness prevents it now. Her greatest desire is to receive
Ms. B, a 63-year-old African-American Pentecostal woman
and give love to her immediate family, including
dying with bone cancer. Excerpts from an interview con-
grandchildren (her spiritual community now).
ducted by this author provide a partial picture of
A (address)Would appreciate religiously like-minded
Ms. Bs spirituality:
nurses verbally reminding her of Gods providence and
If I ever wanted to be loved and appreciated, it is praying for her.
now! I just need to be with my grandkids, my kids all
the time. I want to cook for them. I want to go places Nursing
with them. I want to take some pictures. I just want to
do it until that time comes . . . just the need to be Recent years have brought a number of spiritual care texts for
wanted, not wanted because you this or you got that . . . nurses.1,2628,50 These books generally include chapters on spir-
a lot of love and laughter . . . just be needed, you know, itual assessment. The nurse authors who have written about
for once, not because I am your momma, not because spiritual assessment are inuenced by the writings of chap-
you have to, just be appreciative that we have each lains and pastoral counselors. However, they often go beyond
other . . . a discussion of what dimensions to include in an assessment,
I believe that there is a God, that Jesus died for to concrete suggestions about how to incorporate spiritual
you. I have hope, because a Man is up there. But I assessment into nursing care. Following is a review of what
cant go to church Sundays. With the pain, the pews some nurse authors have suggested as spiritual dimensions for
are too hard, and I cant get to the restrooms quick which to assess.
enough. In a groundbreaking article, Stoll51 suggests four areas for
You never go til the Lord take you . . . and He says spiritual assessment:
He will never leave you or forsake you. God allows
The patients concept or God or deity
this to be a testimony to other people about Jesus, how
Sources of hope and strength
he died for us. There are things you can be doing. Say,
Religious practices
we could be helping someone else. I speak with some-
The relationship between spiritual beliefs and health
one else about it and give God all the praise. I could sit
here and say Oh, Im ready for the Lord to take me Shelly27 posited that there are three fundamental or underlying
whenever He ready and I can die. Cause every time I spiritual needs that should guide how a nurse completes a
get readyand at rst I did. But right now I wanna spiritual assessment. These needs are: (1) to be loved and to
express so much what He has done that Im not ready love in return, (2) to experience forgiveness and extend it to
to go until Ive expressed it. others, (3) to nd meaning and purpose in life and hope for
Nobody wants to go to Hell! Excuse me for sayin it the future (p. 30).
like that. So, the rst thing you want to do is get life Carpenitos35 questions for collecting data to make a nurs-
right and go to Heaven. Even though I am in the Word ing diagnoses of spiritual distress or potential for enhanced
and you say, Lord, Lord, Lord, maybe not to say you spiritual well-being reect Stolls51 approach. In addition to
are going, but sometime, you feel like, Am I already questions that simply ascertain a patients religious afliation,
going to Hell? or whatever! But you want to be as right supportive clergy and helpful religious books as a source of
as you can. strength and meaning, and questions that explore the link
I wish the nurses would just stay for a few minutes between spirituality and health are given (e.g., What effect do
and say you gonna be okay, its in Gods hands. you expect your illness (hospitalization) to have on your spir-
Thats just in an instant, nursing spirituality! Or, hav- itual practices or beliefs? How can I help you maintain your
ing a nurse say, Okay, Im gonna put you on my spiritual strength during this illness?). Furthermore, the
prayer list. But if the nurse is not a believer like me, it North American Nursing Diagnosis Association (NANDA)
doesnt help. You gotta have to have a certain feelin or criteria for spiritual distress can be used as indicators on an
vibe. checklist-type assessment tool. Figure 30-1 provides an exam-
o] ple of a spiritual self-assessment form.
Spiritual Self-Assessment
Often when people confront health challenges, they become more aware of their spirituality. For some, spiritual ways of
thinking or living are especially helpful when health concerns emerge. For others, spiritual questions or doubts arise.
This form will guide you to think about spiritual issues. After completing it, you may choose to keep it or give it to
your nurse, who may want to share it with other health care professionals who will be caring for you.
NAME: _______________________________________
ROOM NUMBER: ___________
Place an X on the lines to show the answer that comes closest to describing your feelings.
Recently, my spirits have been. . .
awful low okay good great
In general, I see myself as. . .

not at all spiritual a little spiritual somewhat spiritual fairly spiritual very spiritual
In general, I see myself as. . .

not at all religious a little religious somewhat religious fairly religious very religious
What can a nurse do that would help to nurture or boost your spirits? (check all that apply)
___ spend quiet time with you
___ have prayer with you
___ help you meditate
___ allow time and space for your private prayer or meditation
___ let you know nurse(s) are praying privately for you
___ read spiritually helpful literature to you
___ bring art or music to you that nurtures your spirit
___ bring you literature that you feel is spiritually helpful
___ help you to stay connected to your spiritual community
___ help you to observe religious practices
___ listen to your thoughts about certain spiritual matters
___ help you to remember how you have grown from previous difficult life experiences
___ help you to tell your life story
___ help you to face painful questions, doubts, or suffering
___ just be with you, not necessarily talking with you
___ just show a genuine and personal interest in you
I would also like help in boosting my spirits from:

___ my friends and family
___ other health care professionals
___ my own clergy or spiritual mentor
___ other clergy or spiritual leader
___ a chaplain at this institution
What would you like your nurse to know about your prayer or meditation beliefs and practices?
What literature, art, or music nurtures your spirit?
How can the nurse assist you with religious practices or fellowship?
What spiritual matters would you like to talk about most?
In what other ways can the nurse help to boost your spirits?
If there is anyone in particular you would like to meet with for spiritual fellowship, please so state. Or if there is
someone you would like us to contact for you, please share what contact information you know:
Figure 301. Spiritual self-assessment form. Source: Taylor, Elizabeth Johnston. Spiritual Care:
Nursing Theory, Research, and Practice. Upper Saddle River, NJ: Pearson Education, Inc., 2002.
Copyright 2002 by Pearson Education, Inc. Reproduced with permission. 587
588 Spiritual Care
Dosseys52 spiritual-assessment tool uses language that is personal interests; and ability to demonstrate love of self and
less traditional (i.e., less overtly religious). This tool includes self-forgiveness. Selected questions from Dosseys tool are
questions designed to assess meaning and purpose (a persons found in Table 303, many in an adapted form.
ability to seek meaning and fulllment in life, manifest hope, While some spiritual care texts focus on how to conduct
and accept ambiguity and uncertainty) and inner strength spiritual assessment interviews, some focus on paper-and-
(a persons ability to manifest joy and recognize strengths, pencil type instruments for collecting information about
choices, goals, and faith). The tool also contains questions spirituality.1,26 These instruments include some that are psy-
that assess interconnections, or what Dossey describes as a chometrically tested and can be used for research purposes
persons positive self-concept, self-esteem, and sense of self; and some that were developed specically for nurse or client
sense of belonging in the world with others; capacity to pursue spiritual self-assessment. An example of a nurse-developed
Table 303
Selected Questions Adapted from Dosseys Spiritual-Assessment Tool
Meaning and Purpose

What gives your life meaning?
How does your illness interfere with your life goals?
How eager are you to get wellor to die?
What is the most important or powerful thing in your life?
Inner Strengths
What brings you joy and/or peace in your life?
What makes you feel alive and full of spirit?
What traits do you like about yourself? And how have these traits helped you to cope with your
current situation?
Although physical healing may not be possible, what would help you to heal emotionally
or spiritually?
How does your faith play a role in your health? In your preparation for death?
Interconnections
With Self
How do you feel about yourself right now?
What do you do to love yourself, or forgive yourself?
What do you do to heal your spirit?
With Others
Who are the people to whom you are closest? How can they help you now? How can you help
them now?
How able are you to ask for help? To receive that help graciously?
How able are you to forgive others?
With Transcendent Other, Divinity

How important is it to you to worship a higher power or God? What forms of worship are most
helpful to you now?
Does prayer, meditation, relaxation, or guided imagery, or anything like these, help you? How
do they help you? For example, how are your prayers answered?
With the Environment, Nature

How connected to the earth do you feel?
Do you have spiritual insights when you enjoy natures beauty?
How does your environment stress you, or contribute to your illness?
Source: Questions selected and adapted from Dossey (1998), reference 52.
self-assessment form for use with patients is presented in sions of spirituality (e.g., world views, commitments, mis-
Figure 30-1. sions, values) in a natural, noncontrived manner. Life reviews
can be prompted by questions about the signicant events,
Summary of Spiritual Assessment Models people, and challenges during the lifespan. A life review can
also occur when inquiring about personal objects, pictures, or
The above summaries of various models for spiritual assess- other memorabilia the patient wants to share.
ment identify spiritual dimensions that may be included in a Hodge55 identied several creative approaches to collecting
spiritual assessment. Many of the dimensions identied in one information about client spirituality. Diagrammatic tools such
model are observed (often using different language) in other as a spiritual genogram, spiritual family tree, or spiritual map
models. The method necessary for completing the assessment could be drawn by the patient to describe and organize their
generally requires the professional to make observations while spirituality. Having clients draw a spiritual timeline that
asking questions, and listening for the patients response. The includes signicant books, experiences, events, and so forth,
vast majority of questions recommended for use in following will also yield rich information. Another unusual approach
such a model are open-ended. Several of the questions involves sentence completion. For example, a client may ll in
indeed, the dimensions of spiritualityidentied in this liter- the blank of sentences like My relation to God . . . or What I
ature use God language or assume a patient will have belief would really like to be . . . or When I feel overwhelmed. . . .
in some transcendent divinity. The medical and nursing mod-
els that explicitly suggest assessment questions should address When to Assess
the linkage between spirituality and health, while the pastoral
counseling models do not. All the models are developed by Dudley and colleagues34 found that 100 of 117 hospices sur-
professionals who are inuenced predominantly by Western, veyed acknowledged that they did spiritual assessments rou-
Judeo-Christian ways of thinking. tinely. In practice, if spiritual assessment is a routine, it generally
occurs during the initial intake assessment. However, some
experts agree that spiritual assessment should be an ongoing
o] process.1,45,57 The nurse does not complete a spiritual assess-
General Observations and Suggestions For ment simply by asking some questions about religion or spiri-
Conducting a Spiritual Assessment tuality during an intake interview. Instead, spiritual assessment
should be ongoing throughout the nursepatient relationship.
What Approach to Use Stoll,51 recognizing the signicance of timing when asking
patients questions about spirituality, suggested that spiritual
Whereas researchers often assess individuals spirituality assessment be separated from a sexual assessment because
quantitatively with paper and pencil questionnaires, health both topics are so sensitive and intimate. However, both spiri-
care professionals generally assess spirituality using qualitative tual and sexual assessment should occur during the general
methods (e.g., participant observations, semistructured inter- assessment for the purposes of screening for problems. Several
views). However, it is possible to use questionnaires during the authors remind their readers that spiritual assessments can
clinical spiritual-assessment process.1,26,28,40,53 This approach to only be effectively completed if the health care professional
conducting a spiritual assessment allows for identication, has rst established trust and rapport with the patient.6,51,57
and possibly, measurement, of what one believes and how one
behaves. This type of tool, however, should not stand alone Levels of Assessment
in the process of spiritual assessment; rather, it can be the
springboard for a more thorough assessment and deeper Many advocate a two-tiered approach to spiritual assess-
encounter with a patient, as appropriate. A quantitative tool ment.1,6,23,50 That is, a brief assessment for screening purposes
should never replace human contact, instead, it should facili- is conducted when a patient enters a health care institution for
tate it. Although a quantitative spiritual self-assessment form palliative care. Matthews49 or Puchalskis47 FICA guidelines
provides an opportunity for health care teams to glean sub- work especially well for this screening. Ideally, what spiritual
stantial information when screening for spiritual beliefs and needs exist and how the palliative care team can care for these
practices, without spending any professionals time, it also is needs should be determined. Spiritual needs, however, are
limited by its mechanistic, rigid, and nonindividualized nature.6 complex and often difcult to acknowledge, and more so, to
Other approaches to spiritual assessment have been described describe with words. Furthermore, the patient may not yet feel
in addition to the interview and questionnaire techniques. comfortable divulging such intimate information to a nurse
LeFavi and Wessels54 described how life reviews can become, in with whom rapport has not been established. General open-
essence, spiritual assessments. Life reviews are especially valu- ended questions eliciting information about their faith, reli-
able for persons who are dying, as they allow patients to make giousness, or spiritual beliefs and practices are less upsetting
sense of and reconcile their life story. By doing a life review than asking about spiritual need and can indirectly provide
with a terminally ill patient, the nurse can assess many dimen- clues about needs. Kub and colleagues,58 in their research
590 Spiritual Care
with 114 terminally ill persons, found that a single question on the walls? Get-well cards or books with spiritual themes?
about the importance of religion to be more discriminating Are there indicators that the patient has many friends and
than a question about frequency of attendance at religious family providing love and a sense of community? Are the cur-
services. tains closed and the bedspread pulled over the face? Does the
If the screening assessment generates an impression that patient appear agitated or angry? Many of the factors a pallia-
there are spiritual needs, then spiritual care can only be tive care nurse usually assesses will provide data for a spiritual
planned if further information is collected. The second tier of assessment as well as the psychosocial assessment.
assessment allows for focused, in-depth assessment. For exam-
ple, if a nurse observes a terminally ill patients spouse crying Language: Religious or Spiritual Words?
and stating, Why does God have to take my sweetheart?, then
the nurse would want to understand further what factors are One barrier to spiritual assessment is the nurses fear of
contributing to or may relieve this spiritual pain. To focus the offending a nonreligious patient by using religious language.
assessment on the pertinent topic, the nurse would then ask However, when one remembers the nonreligious nature of
questions that explore the spouses why questions, beliefs spirituality, this barrier disappears. Patients spirituality can be
about misfortune, perceptions of God, and spiritual coping discussed without God language or reference to religion.
strategies. To know what language will not be offensive during a
spiritual assessment, the nurse must remember two guide-
Prefacing the Spiritual Assessment lines. First, the nurse can begin the assessment with ques-
tions that are general and unrelated to religious assumptions.
Because spirituality and religiosity are sensitive and personal For example, What is giving you the strength to cope with
topics (as are most other topics nurses assess), it is polite for a your illness now? or What spiritual beliefs and practices are
nurse to preface a spiritual assessment with an acknowledg- important to you as you cope with your illness? Second,
ment of the sensitivity of the questions and an explanation for the nurse must listen for the language of the patient, and use
why such an assessment is necessary.1,45 For example, Mau- the patients language when formulating more specific
gens45 suggested this preface: follow-up questions. If a patient responds to a question with
My faith and prayers help me, then the nurse knows faith
Many people have strong spiritual or religious beliefs
and prayer are words that will not offend this patient. If a
that shape their lives, including their health and experi-
patient states that the Great Spirit guides, then the sensitive
ences with illness. If you are comfortable talking about
nurse will not respond with, Tell me how Jesus is your
this topic, would you please share any of your beliefs
guide.
and practices that you might want me to know as your
physician (p. 12).
Asking Questions
Such a preface undoubtedly will help both the patient and the
clinician to feel at ease during the assessment. Because asking a patient questions is an integral part of most
spiritual assessments, it is good to remember some of the basics
Assessing Nonverbal Indicators of Spirituality of formulating good questions. Asking close-ended questions
that allow for short factual or yes/no responses is helpful when
Although this discussion of spiritual assessment has thus far a nurse truly has no time or ability for further assessment.
focused on how to frame a verbal question and allow a Otherwise, to appreciate the uniqueness and complexity of an
patient to verbalize a response, the nurse must remember individuals spirituality, the nurse must focus on asking open-
that most communication occurs nonverbally. Hence, the ended questions. The best open-ended questions begin with
nurse must assess the nonverbal communication and the how, what, when, who, or phrases like Tell me about . . . Gen-
environment of the patient. A chaplain mentor instructed erally, questions beginning with why are not helpful; they are
the author to observe the ABCs of spiritual assessment (per- often mixed with a sense of threat or challenge (e.g., Why do
sonal communication, John Pumphries, October 1986). The you believe that?).
observer must assess the Affect, Behaviors, and Communica-
tion of the patient and think, Are these elements congru- Listening to the Answers
ent? An incongruency between affect and words indicates an
area requiring care and further assessment. To illustrate, a Although it is easy to focus on and to worry about what to say
patient who responds to How are you? with Finebut during an assessment, the palliative care nurse must remem-
with an angry tone of voice and demeanor and avoidance of ber the importance of listening to the patients responses. Dis-
eye contact, is sending incongruent messages. Such a patient cussion of active listening is beyond the scope of this chapter,
is likely angry. yet a few comments are in order. Remember that silence is
Assessment of the patients environment can also provide appropriate when listening to a patients spiritual and sacred
clues about spiritual state.1,27 Are there religious objects on story. Listen for more than words; listen for symbols, listen for
the bedside table? Are there religious paintings or crucixes where the patient places energy, listen for emotion in addition
to cognitions. The nurse will do well to listen to his or her own Assessing Children
inner response. This response will mirror the feelings of the
patient. Several strategies can be employed to assess the spirituality of
children. The clinician must remember, however, that building
Overcoming the Time Barrier trust and rapport with children is essential to completing a
helpful spiritual assessment. Children are especially capable of
Health care professionals may believe that they do not have ascertaining an adults degree of authenticity. Children also are
enough time to conduct a spiritual assessment. Indeed, Mau- less likely to be offended by a question about religion. If a
gens45 observed that completing his spiritual history with nurse creates a comfortable and nonjudgmental atmosphere
patients took about 10 to 15 minutes. Although this is much in which a child can discuss spiritual topics, then the child will
less time than Maugen and his colleagues expected it to take, it talk. Never underestimate the profoundness of a childs spiri-
is still a considerable amount of time in todays health care tual experience, especially a dying childs.
context. One response to this time barrier is to remember that In addition to asking assessment questions verbally, the
spiritual assessment is a process that develops as the nurse nurse can use play interviews, picture drawings, observations,
gains the trust of a patient. It is ongoing.56 The nurse can and informal interviews.59-60 The nurse may need to be more
accomplish the assessment during clinical chatterings. 45 Fur- creative in formulating questions if the childs vocabulary is
thermore, data for a spiritual assessment can be simultane- limited. For example, instead of asking the child about helpful
ously collected with other assessments or during interventions religious rituals, the nurse may need to ask questions about
(e.g., while bathing or completing bedtime care). And nally, what they do to get ready to sleep or what they do on weekends.
it can be argued that nurses do not have time to not conduct a When asking, Does your mommy pray with you before you go
spiritual assessment, considering the fundamental and power- to sleep? or What do you do on Sunday or Sabbath morn-
ful nature of spirituality. ings? the nurse can learn whether prayer or religious service
attendance are a part of this childs life. An assessment question
Overcoming Personal Barriers that Sexsons60 colleague Patricia Fosarelli found to be particu-
larly helpful with 6- to 18-year-olds was: If you could get God
Nurses can encounter personal barriers to conducting a spiri- to answer one question, what one question would you ask
tual assessment. These barriers can include feelings of embar- God?
rassment or insecurity about the topic, or can result from Understanding the familys spirituality is pivotal to under-
projection of unresolved and painful personal spiritual doubts standing the childs. Structured interviews or unstructured
or struggles. Every nurse has a personal philosophy or world conversations with parents and even older siblings will inform
view that inuences his or her spiritual beliefs. These beliefs the health care team about the childs spirituality.60 Barnes and
can color or blind the nurses assessment techniques and inter- colleagues61 suggested the following questions as guides for
pretation. Hence, an accurate and sensitive spiritual assess- assessing how a familys spirituality affects illness experience:
ment requires that the nurse be spiritually self-aware. Nurses
How does the family understand lifes purpose
can increase their comfort with the topic and their awareness
and meaning?
of their spiritual self if they ask themselves variations of the
How do they explain illness and suffering?
questions they anticipate asking patients. For example, What
How do they view the person in the context of the
gives my life meaning and purpose? How do my spiritual
body, mind, soul, spirit, and so forth?
beliefs inuence the way I relate to my own death? How do I
How is the specic illness of the child explained?
love myself and forgive myself?
What treatments are necessary for the child?
Who is the qualied person to address these various
Assessing Impaired Patients treatments for the various parts of the childs
healing?
Although verbal conversation is integral to a typical spiritual
What is the outcome measurement that the family is
assessment, some terminally ill patients may not be able to
using to measure successful treatment (good death)?
speak, hear, or understand a verbal assessment. Patients who
are unable to communicate verbally may feel unheard. In such While assessing children, it is vital to consider their stage of
situations, the nurse again must remember alternative sources cognitive and faith development.59,60 Questions must be framed
of information. The nurse can consult with the family mem- in age-appropriate language (a 4-year-old will likely not under-
bers and observe the patients environment and nonverbal stand what spiritual belief means!). Toddlers and preschool-
communications. Alternative methods for conversing can also ers talk about their spirituality in very concrete terms, with an
be used. For patients who can write, paper-and-pencil question- egocentric manner. School-aged and adolescent children
naires can be very helpful. Always be patient and be unafraid of should be addressed straightforwardly about how they see their
the tears that can follow. Questions that demonstrate concern illness. Inquiring about the cause of their illness is especially
for their innermost well-being may release their oodgates for important, as many children view their illness and impending
tears. death as punishment.60
592 Spiritual Care
Assessing Diverse Spiritualities OBriens28 list of potential spiritual problems begins to show
the variety of diagnoses one patient could be given. Indeed, the
Spiritual assessment methods must be exible enough to NANDA primary diagnoses offer only a vague description; it
obtain valid data from persons with diverse spiritual and reli- is essential that the secondary or related to element of the
gious backgrounds. Although the questions and assumptions NANDA diagnosis be determined.1,35 Without specic identi-
presented in this chapter will be helpful for assessing most cation of a spiritual problem and its etiology, appropriate and
patients living in Western, Euro-American cultures, they may effective interventions cannot be implemented.
not be for some patients who do not share these presupposi-
tions. For example, some may believe it is wrong to discuss Documentation
their inner spiritual turmoil as they face death and will refuse
to fully engage in the process of spiritual assessment. (While Although assessments of physiological phenomenon are read-
some Buddhists and Hindus may believe they must be in a ily documented in patient charts, assessments and diagnoses
peaceful state to be reincarnated to a better state, African- of spiritual problems are less frequently documented. How-
American Christians may think it is sinful to express doubts ever, for many reasons, spiritual assessments and care should
or anger towards God.) Framing spiritual assessment in a be documented. These reasons include: (1) to facilitate the
positive tone may overcome this type of barrier (e.g., Tell me continuity of patient care among palliative care team mem-
about how you are at peace now.) Others may assume they bers, and (2) to document for the monitoring purposes of
are void of spirituality and therefore decline any questions accrediting bodies, researchers, quality management teams,
regarding their spirituality. This barrier to assessment can and so forth.
be overcome with questions that are void of such language Formats for documenting spiritual assessments and diag-
(e.g., What gives your life meaning? or How is your noses can vary. Some institutions encourage staff to use SOAP
courage?). (Subjective, Objective, Assessment, Plan) or similar format-
For patients who are religious, it is important to remem- ting in progress notes shared by the multidisciplinary team.
ber that no two members of a religious community or family Others have developed quick and easy checklists for docu-
are exactly alike. For example, one orthodoxly religious per- menting spiritual and religious issues. Perhaps an assessment
son may believe he should never consume any mind-altering format that allows for both rapid documentation and optional
drugs, such as morphine, while a less conservative member narrative data is best. However, merely documenting ones
of the same denomination may understand that such drugs religious afliation and whether one desires a referral to a spir-
are a gracious Godly gift. Although having a cursory under- itual care specialist certainly does not adequately indicate a
standing of the worlds major religious traditions provides patients spiritual status and need.
nurses with some framework for inquiry, remaining open A summary of assessment forms created by professionals at
to the variation of religious experience and expression is hospices is reported by Dudley, Smith, and Millison.34 These
essential. researchers synthesized the spiritual assessment forms from
53 hospices, nding questions about religious afliation and
rituals, religious problems or barriers, and questions about
o] spiritual (nonreligious) topics, that is, questions void of
The Next Step: What To Do with overtly religious language. While Dudley and colleagues sum-
a Spiritual Assessment marize the content of these forms, they do not review the for-
mat for documentation on these forms.
Making a Diagnosis
The North American Nursing Diagnosis Association (NANDA) o]

includes spiritual distress, risk for spiritual distress, and Conclusion
potential for enhanced spiritual well-being as validated diag-
noses.1,34 However, other language can be used to label a spiri- Spirituality is an elemental and pervading dimension for per-
tual problem. For example, the NANDA diagnoses of anxiety, sons, especially those for whom death is imminent. Spiritual
impaired adjustment, ineffective family coping, dysfunc- assessment is essential to effective and sensitive spiritual care.
tional grieving,fear,hopelessness,loneliness,social isola- Indeed, spiritual assessment is the beginning of spiritual
tion, ineffective coping, and defensive coping can also refer care. While the nurse questions a patient about spirituality, the
to what may be essentially spiritual problems. OBrien28 offered nurse is simultaneously assisting the patient to reect on the
a more complete taxonomy for spiritual problems that were innermost and most important aspects of being human. The
identied during research on spirituality during life-threatening nurse is also indicating to the patient that grappling with spir-
illness. OBriens labels for spiritual problems include spiritual itual issues is normal and valuable. The nurse also provides
pain, spiritual alienation, spiritual anxiety, spiritual guilt, spiri- spiritual care during an assessment by being present and wit-
tual anger, spiritual loss, and spiritual despair. nessing what is sacred for the patient.
23. Hunt J, Cobb M, Keeley VL, and Ahmedzai SH. The quality of
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31o] Charles Kemp
Spiritual Care Interventions

The purpose of life is reconciliation with God, self, and others.Charles Kemp1
Management of physical symptoms is the rst step in spiritual care.William Breitbart 2
Key Points This chapter addresses the challenges of providing effective

Hospice and palliative care emerged, in part, as a response to the spiritual care to patients with terminal illness. The chapter is
increasing medicalization of death and dying. structured around the basic spiritual needs and is based on the
Terminal illness tends to bring into sharp focus mans search for certainty that there often is no one in a better position to pro-
meaning or sense of loss of meaning. vide spiritual care than the informed and committed nurse.
The nursing challenge is to ensure that the sacred and the spiritual
needs of the patient and family, so great at this time, are an integral
part of their care. o]
Denitions
There are many denitions of spirituality, religion, faith, and

spiritual needs. For the purposes of this chapter, these terms
are dened as follows:1,36
Religion: An organized effort, usually involving rit-
ual, dogma, and/or devotion, to manifest spirituality.
Faith: The acceptance, without objective proof, of
something, e.g., God.
Spirituality: The incorporation of a transcendent
dimension in life, usually, but not always, involving
faith and religion.
Spiritual needs: Human needs for transcendence
that are addressed by most religions. The basic spiri-
tual needs are meaning or purpose, hope, related-
ness, forgiveness or acceptance, and transcendence.
Popular psychology or postmodern standards of political cor-
rectness often focus on spirituality without religion, faith, or
God. However, in the real world of suffering, dying, and death, it
is religion, faith, and God to which the majority of people turn.
o]
Preparation
Providing spiritual care at the end of life can (and perhaps

should) be a daunting task. Even the most academically and
clinically prepared chaplain or counselor sometimes feels her
595
596 Spiritual Care
or his own inadequacy to intervene effectively with a person live and die in a way perceived to be good.8 In the
facing the end of life. While there is an increase in education struggle of terminal illness, spiritual hope may be dis-
on spiritual issues and care in health professions education, tilled into achieving the purpose of life: reconciliation
there often is a lack of practical content or practice in actually with God, with self, and with others.1
providing spiritual care. This lack of preparation, coupled Relatedness for Christians, Jews, and Muslims is to God; for
with the enormity of death and the nurses personal doubts Hindus and Buddhists, relatedness may also be to (1)
and uncertainties, may result in a reluctance to attempt to pro- God or a god or (2) a system of spiritual faith or belief.
vide spiritual careeven when the need is apparent.6-8 Here, God is dened as supreme or ultimate reality, in-
Preparation to provide spiritual care includes clarication nite, eternal, universal, all-knowing, and Being Itself.
of goals, knowledge of spiritual needs, personal exploration, Relatedness for persons of any faith may also include
and willingness to apply knowledge of some basic interventions. relatedness to a religion or faith community.
Spiritual assessment and care should be introduced early in Forgiveness by God is often seen in the West as a concept
the course of care and reevaluated continuously. To facilitate a of Christianity, Judaism, or Islam. However, the Bud-
foundation of spiritual care, it is often essential for the nurse dhist and Hindu concepts of karma and transmigra-
to rst establish both a trusting relationship with the patient tion of souls also directly address forgiveness or at least
and good communication. another chance to rectify mistakes. Acceptance is
related to forgiveness and meets the underlying need to
deal with mistakes or misfortune in life.1
Clarication of Goals
Transcendence is that which takes one beyond self and
The primary goal of spiritual care is to increase the opportu- sufferingor attachment to self and sufferingbeyond
nity for reconciliation with God (or a higher power) and self. death. Transcendence can occur as a result of meeting
This goal is based on the ideas that (1) life does indeed come other spiritual needs or as grace or manifestation of the
from God, and (2) for many people, the process of living divine, and thus may be seen as the outcome of spiri-
includes some degree of felt separation from God and faith. In tual needs or as the ultimate spiritual need.1,13
the Western world, approximately 95% of people claim to
Understanding or working toward understanding these needs
believe in God, and worldwide about 85% of people claim to
provides a framework for understanding and intervening in
be religious,911 so this goal would logically be as basic to per-
spiritual distress. Not every person ts neatly into spiritual
sons with terminal illness as would relieving pain, dyspnea,
distress related to one or more of these (unmet) needs, but at
and other symptoms. More specic goals of palliative care are
a minimum, these needs give nurses and others a place to start
clearly related to the spiritual needs, such as decreasing the
looking in a mindful manner at the spiritual dimension in ter-
sense of meaninglessness, purposelessness, or hopelessness or
minal illness.
increasing a sense of relatedness, forgiveness, or acceptance. In
terms of nursing diagnoses, the goal would likely be relieving
spiritual distress, but the previously stated goals are more spe- Personal Exploration
cic and function as etiologies (e.g., spiritual distress related
to hopelessness). Note that the goal in spiritual care is not to Working in palliative care is emotionally and spiritually chal-
provide ones own answers to ultimate questions or for the lenging. Regardless of ones profession or role, those who work
patient to achieve a particular belief. Most of the interventions in palliative care operate, at least some of the time, at the edge
and goals given here can apply to persons of any faith, or even of human existence and are often confronted by deep human
to persons of no faith. suffering in all spheres of being (physical, psychological, social,
and spiritual). To work gracefully and effectively in these cir-
cumstances, it is essential to explore ones own losses, grief, and
Knowledge of Spiritual Needs fears. Such an exploration brings the practitioner face-to-face
with existential challenges, such as the inevitability and nal-
Each of the spiritual needs is discussed below. Hope is also dis-
ity of death, the isolation and separateness that are part of
cussed more extensively in Chapter 26.
every life, and, if the truth be known, the inability to truly
Meaning includes the reason for an event or events, the deal with it. Sooner or later, personal exploration may then
purpose of life, and the belief in a primary force in life. evolve into a spiritual search. Here again, though, the searcher
Meaning may be sought in a review of life achieve- may be found wanting. One may then look to the refuge
ments, in a review of relationships, in a moral or spiri- intrinsic in every major faith. For here is the truth: Few of us in
tual search, especially of life as it was lived, and in an palliative care would presume to think I can do the whole of
effort to discern the meaning of dying, of human exis- the physical carein terms of the care for a particular
tence, of suffering, and of the remaining days of life.3,4 patient, much less in terms of developing and putting into
Hope is for the expectation of a good that is yet to be.12 practice the theory and principles of palliative care! Few of us
There often is hope to not die, and, failing that, hope to (clergy included) should then presume to think I can do the
Spiritual Care Interventions 597
whole of the spiritual careeither in terms of the care for a 9=

particular patient, much less in terms of confronting and A 17-Year-Old Girl with Bronchitis
understanding the enormity of human existence, including
I work mostly in primary care with medically indigent
death.
refugees and immigrants. Not long ago I walked into an exam
Personal spiritual exploration may lead to exploration of
room where a 17-year-old Mexican girl sat, ravaged by a 5-year
spiritual and religious resources such as church, synagogue,
history of central nervous system tumor, seizures, strokes,
mosque, or temple. Of course, there are those who are spiritu-
surgeries, and radiation. Her mother sat a few feet away,
ally well-grounded and able to provide quality spiritual care
silent, dignied, very tired, and full of pain. The girl had
even though they do not participate in religious activities. How-
bronchitis, and I prescribed the appropriate treatment. My
ever, a greater number do nd that participation in spiritually
anxiety about prayer fell away (Why was I ever concerned
based activities, specically in religious activities where uni-
about myself ?) and I asked the Mom if we could pray. She
versal values are served by tradition, increases the capacity to
said yes, and we all held hands and I led the girl, Mom, trans-
provide spiritual care.3,14
lator, and nursing student in prayer. I thanked God for the
In their seminal study of the spiritual practices of oncology
Mom, the girl, for the doctors and nurses treating the girl,
nurses, Taylor, Amenta, and Higheld15 found that 65% of
and for them coming to our clinic; I prayed for healing of
oncology nurses surveyed attended religious services fre-
body and spirit and for the strength to accept Gods will.
quently, ranging from one to three times per month (21%) to
o]
weekly or more often (44%). Both nurses and their patients
benet from the strongest possible spiritual foundation. So the rst step is to see what is in front of ones eyes and forget
about oneself. Invitations to prayer come from the heart. The
Basic Spiritual Care Interventions: words might include,Could I say a prayer with you or for you?
Watching With and Prayer or Are you a praying person, because this feels like a time for a
prayer. A noted physician and ethicist suggests that prayer may
Interventions related to basic spiritual needs are presented be gently introduced into a patient-care encounter by asking,
below; however, it is vital to keep in mind that the critical and Would it be okay if we have a prayer? Even if it wont help you,
most fundamental intervention is to remain present (to watch it will help me.18 Readers will readily see that such a request also
through the night) in the face of suffering, fear, despair, and all is likely to have a salutary effect on the relationship between the
the physical/emotional/social/spiritual trials of dying. 16 Being patient and provider. Other interventions are discussed below.
present on a consistent basis through the process of dying is
primary spiritual care and addresses the most fundamental
spiritual needthe need for transcendence. Granted, neither o]
the patient nor the nurse may necessarily feel transcendent. Interventions: Spiritual Needs,
Still, there is an undeniable element of transcendence in the Problems, and Practices
willingness to go beyond self and suffering, and there is an
undeniable need for this presence. The Bible presents the need Each of the spiritual needs is examined below, including a dis-
for this presence in stark and universal terms: My soul is very cussion of the need, manifestations of the unmet need, and
sorrowful, even to death; remain here, and watch with me interventions to help in meeting the need. In actual practice,
(Matthew 26:38).17 And so the nurse and others working in there often is overlap among problems resulting from the unmet
palliative and hospice care have this opportunity to provide needs. This may include needs that are never assessed and needs
primary spiritual care that does not require understanding, that are met or neglected to varying degrees. As with other
answers, acceptance, or conqueringall that is required is to frameworks for practice, patients and families do not always t
watch with me. neatly into certain categories. In general, unmet spiritual needs
A second, fundamental intervention is prayer. While many may be expressed by direct statements of hopelessness, mean-
authors note prayer as an intervention, few are able to say how inglessness, despair, guilt, and so on. Indirect expressions of
one implements this basic aspect of care (except as an expres- unmet spiritual needs may include anxiety, sadness/depression,
sion of [usually Christian] spiritual practice). Here then are fear, irritation, loneliness, and anger.6 (See Chapter 30, Spiritual
some of the authors thoughts and experiences in prayer. Assessment, for discussion of these signs.)
For many, prayer is a deeply personal issue. For a non-
clergyperson, moving into the dimension of prayer may be a
difcult step. Knowing that somehow prayer would help, there o]
still may be reluctance to (1) take the risk of spiritual rejection Meaning
or (2) be put on the spot as a provider of frank spiritual care
when there is certain knowledge of ones personal spiritual For many people, serious questions about the meaning of life
inadequacies. Yet we know prayer can be comforting, cleans- typically arise in the late teen years and into the early 20s.
ing, and transcendent. The rst one is the hardest. After that, these questions may be set aside or put into the
598 Spiritual Care
background, as work, relationships, raising children, and the patient explore them in greater depth, and helps identify
other life demands take precedence over philosophical pur- ways in which the relationships might be redened or viewed
suits. Often, decisions are made and paths taken without regard in a more realistic manner. Specic to spiritual matters and
to any component of meaning or other such concerns. In life, meaning, the nurse might ask the patient to think about some-
one does what one must do. Later, as the end of life approaches, thing that has been full of meaning in the patients life and,
questions of meaning may again arise. conversely, to think of something important that seemed mean-
Few people go through the process of terminal illness with- ingless or possessed negative meaning. The interventions are
out experiencing some form of life review. It is important to contained (1) in the patients explanation of the issue or issues
note that those whose physical symptoms are unmanaged with- and (2) in the nurses help to the patient in breaking out of
out remission are often unable to address meaning and other repetitious thinking about the issue(s).
spiritual issues because they are more likely to focus only on The search for meaning in life as it has been lived is facili-
physical needs and suffering.2 That life review, whether con- tated by asking the patient the very serious question, If you
scious or unconscious, brings forth the question of, What did had your life to live over again, what would you like to be dif-
my life mean and how well did I live it? If the answer is, My ferent and what would you like to be the same? In certain
life was full of meaning and I lived it well, then meaning is close and therapeutic relationships, this question can serve as
more likely to be found in the last days, and those days are a framework for the therapeutic aspect of the relationship. In a
more likely to be lived well. If, on the other hand, the answer is, home care setting, for example, the question can be rephrased
My life had little meaning and I did not live it well, then to address the various dimensions of a persons life (e.g., In
meaning is less likely to be found in the last days, and those terms of your spiritual life, what would you . . . or In terms of
days are less likely to be lived well. The old adage of palliative relationships . . .).
care is again illustrated: without skilled intervention, most This If you had your life to live over question is often
people die in a manner very similar to that of the rest of their painful for the patient. Who among us does not have painful
lives. memories and regrets? But the pain is not caused by the ques-
However, there are those whose lives are characterized by tion. Most likely the pain was already there, perhaps sup-
spiritual emptiness and pain who then nd meaning in life pressed or perhaps just hidden from others. This question
even as it draws to an end. For these, terminal illness may serves not only to look at the past and the meaning of a per-
serve as a motivation to reach beyond self and suffering. To sons life, but also to present circumstances, the future, and
participate in such a process of spiritual growth is a privilege. what meaning might emerge.
Much of this chapter is focused on promoting this growth. A The meaning of dying, suffering, and death are difcult, if
sense of meaninglessness in life as a whole may be rst not impossible to understand in terms of psychological expla-
addressed by assisting the patient through a mindful life nation. These meanings can be addressed by questions such as,
review.19 What does it mean to you that this (dying or suffering) is
Previously it was noted that unless physical problems are happening? This is a very serious question, and often gets
overwhelming, almost everyone who is dying goes through serious answers. The suffering of the dying is not in any way an
some sort of life review. The problem with such life reviews is academic issue. The questions of,Why me; why am I suffering;
that many times they are undertaken in a time of despair, and/or why am I dying? are not ones for the nurse or others to answer.
they tend to focus on the negative. More importantly, these Rather, they are questions to which the response is to stay with
reviews are unproductive. This author is probably not alone in the patient in her or his time of questioning and doubt. Many
a tendency to wake during the night obsessing about a prob- times, providing an answer only sties the patients exploration
lem or personal decit (in the midst of a life of plenty) and of the suffering and its meaning.
spend an hour or more going over and over and over that Every religion acknowledges and deals with the problem of
problem or decit with little or no progress or insight achieved. suffering and death, and every religion is rich in examples of
The result is a sleepless night with nothing to show for the compassionate reaction to human suffering and death.
distress.
On Him let man meditate
Mindful life review means that the nurse or other staff
Always, for then at the last hour
suggests to the patient a deliberate and thoughtful verbal or
Of going hence from his body he will be strong
written review of the patients life, including relationships,
In the strength of this yoga, faithfully followed:
achievements, failures, high points, low points, and so on. It is
The mind is rm, and the heart
essential to understand that such a review is not a one-time
So full, it hardly knows its love.
activity, or something that occurs early in the relationship, but,
The Way to Eternal Brahman (Bhagavad-Gita)20
rather, is one valued aspect of an ongoing nursepatient rela-
tionship. For example, in a home care setting, the nurse might Buddhas compassion is equal toward all people; but it
ask the patient to think about one important relationship that is expressed with special care toward those, who,
was or is positive and one that was or is less positive and to talk because of their ignorance, have heavier burdens of evil
about those during the next home visit. At that visit, the nurse and suffering to bear.
listens to what the patient says about the relationships, helps Buddhas Relief and Salvation for Us21
I lift up my eyes to the hills.

From whence does my help come? Table 311
Notes on the Search for Meaning: The Patient, Family,
My help comes from the Lord, who made heaven and
and Nurse
earth.
He will not let your foot be moved, he who keeps you Mindfully review life: the good and the bad.
will not slumber. Integrate the sacred into the process of dying: prayer,
Behold, he who keeps Israel will neither slumber nor reading, worship, and ritual.
sleep. Set realistic goals for the remaining days: improving a
The Lord is your keeper; the Lord is your shade on relationship, reading portions of a sacred book, or praying
your right hand. regularly.
The sun shall not smite you by day, nor the moon by The nurse and others consistently dispense loving and
night. competent care, regardless of the extent to which the
The Lord will keep you from all evil; he will keep your patient does or does not nd meaning in the process.
life,
The Lord will keep your going out and your coming in
from this time forth and for evermore.
Psalm 12117 questions about forgiveness, acceptance, punishment, and even
transcendence. Once again the questions and responses lead to
Let not your hearts be troubled; believe in God, believe the realms of spirituality and religion. These questions may lead
also in me. In my Fathers house are many rooms; if it also to questions and exploration of the meaning or purpose of
were not so, would I have told you that I go to prepare the remaining days of life and to the question of what might be
a place for you? And when I go and prepare a place for done to make the most of that time, both in the present and in
you, I will come again and take you to myself, that the future. As noted earlier, the primary goal of spiritual care is
where I am you may be also. And you know the way to increase the opportunity for reconciliation with God (or a
where I am going. higher power) and self. It is not overly directive to suggest that a
John 14:1417 person looking at a very limited future on earth might consider
We heard his prayer and relieved his afiction. We whether one or all three of these reconciliations are worth seri-
restored to him his family and as many more with ous contemplation for at least part of future direction.
them: a blessing from Ourself and an admonition to Finding meaning in the process of dying is largely depend-
worshipers. ent upon the degree to which the patient nds some meaning
The Prophets22 in his or her life when reviewing it. Looking at the question of
what one would like to have done differently in life is critical to
For many patients, help in nding and discussing passages a fulsome review of lifethe good and the bad. Bringing the
from the sacred books of their own faiths may provide the best whole of ones life into consciousness and applying sacred lit-
kind of answer to the question of the meaning of suffering and erature, worship, and prayer to the process of dying may lead
death. Of course, worship, ritual, prayer, and meditation are, directly to increased meaning in the present and future (Table
or should be, part of the spiritual care milieu. Encouraging 311). What our patients need is unconditional faith in
these is important, both for the patients and familys life, and unconditional meaning.15
for promoting their presence in the life of the institution or or-
ganization in which one practices.
Most people confront the questions of meaning in life, suf- o]
fering, and death from the point of view of their own existence. Hope
The human condition and its tendency to isolation leads to the
idea that the feelings of meaningless, emptiness, and broken- Although Chapter 26 is devoted to hope, hope in a solely spir-
ness are unique to the one who is experiencing them. Of course itual sense is also discussed here. Themes or universal com-
these feelings are not unique! Exploration of how and why a ponents of hope include nding meaning through faith or
person feels this way, coupled with a gentle reminder that the spirituality, having afrming relationships, relying on inner
person is not alone in these feelings may be helpful. Here resources, living everyday life, and anticipating survival.23 Not
again, the questions and responses lead to the realms of spiri- all these may be achieved in the context of terminal illnessat
tuality and religion. For Christian and Jewish patients, certain least in a physical sensebut all are applicable to many people
Psalms (e.g., 6, 32, 38, 39, 41, 51, 61, 69, 88, 91, 102, 103, 130, and going through a terminal illness. Despite the realities and chal-
143) are especially appropriate to read and discuss with respect lenges of terminal illness, there may be much to hope for: to
to the meaning of suffering. Better yet, nd out from the live another day, for relief from suffering, for a greater under-
patient what scripture is most meaningful to her or him. standing of life, for a good death with dignity, for a healed rela-
Contemplating and exploring the questions of meaning in tionship, to see a loved one, to not die at all, or simply to be
life, suffering, and death noted above is likely to lead to other able to go through the ordeal of dying.
600 Spiritual Care
Hope in terminal illness can be addressed directly by ask- As far as I know, this patients spiritual needs were never met,
ing, What do you hope for . . . in this illness (or situation)? and I never saw any evidence of hope or reconciliation. So
. . . from others? . . . at this point in your life? . . . in just this what is the point of this case study? Where are the effective
day? . . . in or for yourself ? . . . in your faith (or religion or interventions and the insights? Unfortunately they are not to
spiritual life)? What would you like to hope for? These ques- be foundexcept that those of us who tried to be effective and
tions are powerful at a time like this and can facilitate expres- insightful never gave up. Though none of the caregivers, the
sion of deep feelings and issues. What a question to ask and patient, or the family ever experienced much in the way of
issue to raisehope in terminal illness! The answers to the transcendence, in retrospect, there were 2 years of transcend-
questions are often a mix of hope and resignation. The critical ing the desire to quit.
point is to directly bring up the concept of hope for explo- The week before she died, I went out of town for a confer-
ration and discussion. ence. I returned late Sunday. On Monday, I left for work early
Hope in this context includes hope for reconciliation with so I could see Mrs. P rst. I walked into her apartment and at
God and self. This does not, in any way, diminish the impor- that moment, she died.
tance of hope in relation to other matters, especially hope to There are two great hopes offered to the dying and to all
heal relationships with other people. Hearkening back to the others by faith and religion:
earlier discussion of meaning and reconciliation, one quickly
1. The hope to live more fully and deeplyafter all
sees that making progress toward reconciliation will have a
these years, in so many cases, of superciality. All the
direct impact on the presence or absence of hope, whether
major faiths provide clear guidelines for living in
spiritual or otherwiseor more commonly, on the waxing
connection to faith and God or whatever one calls
and waning of hope.
ultimate reality. All the major faiths say without
equivocation that living in this manner brings the
9= greatest possible fulllment.2
case study 2. The hope for a life beyond this one. All the major
Mrs. P, a Patient with Cervical Cancer world religions have denitive and hopeful beliefs
in outcome, that is, in what happens or can happen
Mrs P had a terribly difcult life. She grew up poor, and
after death. In fact, it is only religious belief that
in her middle years survived war, torture, forced labor, and
offers any possibilities about the future after death
being a refugee several times over. When rst admitted to
other than the recyclable nature of our basic mole-
hospice, she was an alcoholic and abusive to her children. She
cule, carbon.
lived in a run-down one-bedroom apartment with her hus-
band (also an alcoholic), a son who was a gangster, another Increasing or reaching these two great hopes begins with
son with Down syndrome, and a 12-year-old daughter, who exploration of hope and hopelessness, and thence to
was the primary caregiver. Mrs. P spent most of her days and sources of knowledge and insight into hope and truth. After
nights lying on a small couch in the apartments living room. looking at what hope and hopelessness exists, one may
She had cervical cancer, with many complications. Symp- then in partnership with the patient begin looking at the
tom and disease management were complicated by her patients faith tradition for hope that may be found there
alcoholism, poverty, and limited English prociency. Overall, (Table 312).
and considering the circumstances, her symptoms were rela-
Die, and you win heaven. Conquer and you enjoy the
tively well managed.
earth. Stand up now, son of Kunti, and resolve to ght.
It was clear to all concerned that Mrs. P was spiritually
bereft and without hope. Using both Buddhist and Christian
translators, the hospice team tried counseling to address hope
and other spiritual issues in several different ways. Although she
Table 312
was nominally Buddhist, she refused offers of transportation to
Notes on Hope: The Patient, Family, and Nurse
the temple. On several occasions, she accepted gifts of objects
sacred to Buddhists, but after a few days would put them away. Understand common hopes in the process of dying.
Several Christian missionaries visited on a regular basis and, Understand that two great hopes are offered by faith and
although she did not resist these visits, neither did she respond religion: (1) to live fully and deeply, and (2) to expect life
to them. Everything tried seemed to fail. She did, however, show after death.
appreciation for efforts to care for her and her family. Ask direct questions about hope, and explicate the presence
The only thing that seemed to affect her was when one day or absence of hope.
a nursing student knelt unbidden beside Mrs. Ps couch and Integrate the sacred into the process of dying: prayer,
prayed. Although Mrs. P understood little of the prayer, tears reading, worship, and ritual.
began to run down her cheeks as the young woman prayed. The nurse and others faithfully watch through the night,
Afterward, Mrs. P whispered, Thank you. whether the patient or others have or do not have hope.
o]
Realize that pleasure and pain, gain and loss, victory lains in palliative care and hospice services is of great benet to
and defeat, are all one and the same: then go into bat- many patients in need of spiritual support, including ritual
tle. Do this and you cannot commit any sin. and worship.
The Yoga of Knowledge (Bhagavad-Gita)20 Another form of relatedness is to a belief system and/or
religion, which, paradoxically, may not necessarily mean a
strong sense of relatedness to God.26 In some cases, God
o] seems too much to comprehend or relate to: If God is indeed
Relatedness ultimate reality, then how are we to comprehend? In other
cases, there may simply be an inability to take the leap to
Relatedness in the spiritual sense is to faith, religion, and espe- belief. Nevertheless, relatedness to a religion or a faith com-
cially to God (or with whatever represents God), or to all three. munity may be a step toward relatedness to God, or if not
Existentially, of course, many people feel very much alone in relatedness to God, then toward spiritual comfort to the
life and in the universe. The same holds true in terms of faith patient and family.
and/or religion.4 Just as the quest for meaning in life may have Ideally, the patients source of help in nding or increasing
been put into the background, so may a quest for spiritual a sense of relatedness is the patients own faith and clergy. For
growth or for a deep connection with faith been put away. In a variety of reasons, such help is not always available, which
some people, there is a deep feeling of having been failed by tends to further increase a sense of separation. The nurse or
their faith and the faith community. The result of any or all others can explore with the patient her or his faith history,
of these is a sense of isolation from faith and from God or any- especially times when faith and relatedness were strong and
thing greater than thisthis life, this inadequacy, this suffer- when they were weak, and what inuenced those changes
ing, this transience. It is possible, and even not unusual to (Table 313). As in other aspects of palliative care, it often is
spend an entire lifetime trying to avoid dealing with existential the nurses willingness to bring up and explore difcult issues
and spiritual isolation. that is the most therapeutic measure taken. One cannot con-
Terminal illness tends to bring everything into sharper fer relatedness to God. But what can be conferred is the possi-
focus, and loneliness or meaninglessness that once seemed a bility that there is, indeed, something beyond this suffering
bearable part of life may come to the forefront after years of and isolation. Here again, the ancient and priestly act of
suppression. The need for reconciliation or reconnection then watching through the night of fear, suffering, and isolation
becomes a driving force in the remaining days of life. may be the only spiritual care possiblenot to mention, the
For most people of most faiths, the reconnection is to best spiritual care available. Prayer with the patient, for the
God. Whether referred to as Yahweh, God, Lord, or Allah, the patient, or for the nurse or other caregivers is an important
God of Judaism, Christianity, and Islam is clearly explicated. part of spiritual care in this and other issues. For Christians
Contrary to some conceptions of Hinduism, Hindus also and Jews, the Psalms are especially appropriate and helpful
believe in One God, who can be understood and worshipped readings.
in many different forms.24 In the Buddhist canon, related-
Oh God, thou hast rejected us, broken our defenses;
ness is to the faith and philosophy. However, in practice,
thou hast been angry; oh, restore us . . .
many Buddhists believe in a divine force or being, as
Psalm 6017
expressed by the Buddha or existing as mystery and never
explicated, but never denied in the teachings of the Buddha.
From a psychological perspective, Carl Jung25 wrote with
deep insight that the presence or acknowledgment of God
among virtually all peoples of all religions through all times Table 313
is evidence of God as a universal archetype or living psychic Notes on Relatedness: The Patient, Family,
force and that the imprint of God in this manner presup- and Nurse
poses an imprinter. Understand the common problem of existential and/or
Given the incomplete and unenlightened nature of most of spiritual isolation.
us, the primary way then to relatedness to or reconciliation Relatedness may be to God or to religion or the
with God is through religion and religious practice, including faith community.
prayer, ritual, and worship. Ritual and worship are sometimes Explore the patients faith history to help rekindle a
constrained, not so much by patient circumstances, but more sense of relatednessor uncover reasons for a lack
by a lack of imagination on the part of regular sources of spir- of relatedness.
itual care. Thus, a church may not think to bring communion When relatedness does not seem possible, the primary
to the patients home, nor a temple to offer an opportunity to spiritual care is to watch with the patient through the
give alms to monks. The nurse or other provider can then act night.
as an advocate for the patient by giving direct suggestions to Prayer with or for the patient, and for the caregivers is
the source of spiritual care. The nurse may also in some cases important.
provide/participate in ritual. Of course, the presence of chap-
602 Spiritual Care
o] again, what would you like to be different? Clearly this ques-

Forgiveness or Acceptance tion has direct application to the issue of forgiveness or accep-
tance. In the sort of deep and open relationship for which we
Every religion has rules and sanctions related to how one lives strive in hospice and palliative care, this question often brings
in the world and how one practices the religion and its pre- a strong response that may include a deep sense of regret or
cepts. Every religion also acknowledges that humans fail to guilt. The question is really less of an assessment question than
fully follow its rules and has provisions for such failures. In a starting point in a search for understanding and ultimately,
Hinduism and Buddhism, there are cycles of birth and rebirth forgiveness or acceptance (Table 314).
based on actions in life (we are born to be healed). Although
sin and attendant suffering are issues in these faiths, the focus
of practicing the faiths is more on acceptance of self and suf- 9=
fering than on forgiveness. In Judaism, Christianity, and Islam case study
there is the concept of forgiveness of sins. Mrs. K., a Patient with Lung Cancer (the authors mother)
To those who avoid the grossest sins and indecencies Mrs. K. was dying from small cell carcinoma of the lung,
and commit only small offenses, your Lord will show with metastases to brain and bone. Treatment of the pri-
abundant mercy. He knew you well when He created mary tumor and metastases included several courses of
you of earth and when you were hidden in your chemotherapy and radiation, both initiated and discontin-
mothers wombs. Do not pretend to purity; He knows ued at appropriate times. Her primary symptoms were
best those who guard themselves against evil. pain, fatigue, and nausea, all of which were well managed.
The Star22 She lived in a cottage behind the house where her son,
daughter-in-law, and grandson lived. She enjoyed warm,
Psychologically, there may also be a need for forgiveness or ac- supportive relationships with her family and others. She
ceptance of self. While routinely considered psychological had no financial worries.
issues, the need for self-forgiveness or self-acceptance may be However, there was an element of low-level unhappiness
tied to spiritual issues. In most cases, a sense of forgiveness or and vague suffering through much of her illness. In a series of
acceptance from either source (self or God) promotes the same difcult interactions in which she and her son struggled to
from the other source. share their deepest feelings about her life and their relation-
Earlier, it was suggested that persons who are dying (and ship, she was nally able to say truthfully how she saw herself:
others) benet from a mindful life review that includes both Im naked and ugly and skinny. Im lying in the bottom of a
the good and the bad of the persons life. Such a review pit and its dirty and there are cigarette butts all around me.
inevitably leads to consideration of mistakes and/or unfortu- Her son responded, Thats not youits what you feel like,
nate aspects of life. In many cases, there is at least some crum- but its not you. She replied by begging for forgiveness for
bling of defenses that functioned to hide certain painful the mistakes she had made. Her son told her not to beg, that
aspects of life. Guilt is often the result, and it does not seem to he forgave her and hoped that she forgave him, but more
matter whether the issue is something one did, such as a pat- importantly, God forgave her.
tern of dishonesty, or if the issue is something that was experi- She felt a great sense of peace afterward and began making
enced, such as growing up in an alcoholic family. detailed plans for her funeral. Her choices of scripture and
In the discussion of meaning, it was strongly suggested that hymns were a lovely expression of her past and her future.
the nurse employ the question,If you had your life to live over She spent many hours talking about what these passages and
hymns meant to her.
o]
The role of the nurse or chaplain or other caregivers is not

Table 314
to try to confer forgiveness or acceptance or to convince a
Notes on Forgiveness or Acceptance: The Patient, Family,
patient that her or his faith offers forgiveness. It is possible,
and Nurse
however, to manifest forgiveness and acceptance through pro-
Understand the universality of sin, regret, and guilt. viding consistent loving care, and thereby hold out to the
Not all guilt is related to the patients own doing. patient the possibility that forgiveness and acceptance are
A life review almost always includes elements of the need possible. This practice of mercy is a high ethical demand in
for forgiveness or acceptance. nursing and related elds and may be seen in terms of benef-
Forgiveness and/or acceptance cannot be conferred by icence, delity, and justice.1 Similarly to the care in other spir-
another, but the practice of mercy is a manifestation of itual issues, the nurse may help connect the patient to the
forgiveness and acceptance. sacred and the practice of faith: prayer (in this case for forgive-
Integrate the sacred into the process of dying: prayer, ness or acceptance), reading (especially passages that acknowl-
reading, worship, and ritual. edge the reality of sin and forgiveness), and worship and
ritual (especially ritual related to purication).
o] the transcendent beauty seen when there is reconciliation with

Transcendence God, with self, and with others (Table 315).
Transcendence is a quality of faith or spirituality that allows

one to move beyond, to transcend what is given or presented
o]
in experiencein this case, the suffering and despair so often
General Notes on Providing Spiritual Care
inherent in dying.1
Beyond, beyond The following are general suggestions for providing spiritual
Beyond that beyond care. Not all are applicable in every case, and some may never
Beyond the Beyond. be applicable to a particular patient or in a particular persons
Buddhist mantra practice. They are offered here as ideas or suggestions that read-
ers may add to in the effort to provide quality spiritual care.
Transcendence is certainly more than resignation and is also
more than what many think of as acceptance in the process of Remember that there often is nobody better placed
dying. At its highest level, there is an element of beauty or spiri- or better qualied than the nurse to provide spiri-
tual elevation in transcendence. At its most basic level, transcen- tual care.
dence is the means by which one nds meaning retroactively . . . Patients and families often are reluctant to raise
even in a wasted life.14 Even more than the need for forgiveness spiritual issues, but many respond positively to
or acceptance, transcendence resists being conferred by others or health professionals, who are able to step beyond
problem-solving approaches. Man is never helped in his suffer- rigid professional boundaries.6
ing by what he thinks of for himself; only suprahuman, revealed Integration of the sacred into the process of dying
truth lifts him out of his distress.25 should probably always be attempted, even if only in
Transcendence can occur in at least one of two ways: the nurses life and the institutions milieu.
1. The other spiritual needs are met and transcendence
There are situations in which the patient cannot
physically tolerate going to a place of worship for a
then is an outcome.
complete service, but can stay for a limited time.
2. Transcendence occurs through grace, or as Jung
When this is the case, the patient may need help to
would state it, through suprahuman, revealed
choose which part of the service to attend, and the
truth, and thus may exist independently of other
place of worship may need help in accommodating
spiritual needs; or of work, actions, or human
the patients participation in the service. In some
interventions. In this latter case, we see that through
cases, the patient may need additional medication
transcendence, all other spiritual needs are met.
or portable equipment to make it through even part
Transcendence is a profound issue that cannot be approached of the service.
from a problem-solving perspective, and there are no specic When, because of physical or other limitations, it
interventions that lead to transcendence. One watches with becomes difcult for the patient to visit a place of
the patient and practices mercy and is grateful when transcen- worship, home or hospital visits from clergy should
dence occurs. be considered. It is sometimes necessary for the
It is well worth considering that there may be elements of nurse or other staff to make repeated appeals to the
transcendence in the practice of hospice and palliative care. patients clergy for such visits.
Those who practice in this eld operate at the edge of human Other religious activities that can take place at home
existence. Sometimes we see that the practice also has elements or hospital include prayer, ritual, reading, and other
of our own denial and fear of death, but sometimes, in the spiritually oriented activities, including music.
deep heart of the night, we transcend our own denials and Music can be helpful to the patient and others, and
fears and becomeif only for a momenta manifestation of might be provided by a few choir members coming
to the home or by tapes or CDs of religious music.
The presence of a religious book in the patients
home or room provides the opportunity for the
Table 315 nurse to pick up the book and discuss it with the
Notes on Transcendence: The Patient, Family, patient. It is helpful for the nurse to actually take the
and Nurse
book in hand when initiating discussion. It also is
Integration of the sacred into the process of dying may lead helpful to ask the patient to read aloud passages that
to transcendence. are most important to her or him. If the patient is
Transcendence is beyond human intervention. unable to read, the nurse or other caregiver can do
Take note of the times when transcendence occurs in the the reading. (If the book is the Koran, the nurse
practice of hospice and palliative care. should wash his or her hands before taking it
in hand.)
604 Spiritual Care
There is an understandable tendency for people to 4. Kennedy C, Cheston SE. Spiritual distress at lifes end: nding
want to do things for the person who is dying. It is meaning in the maelstrom. J Pastoral Care & Counseling 2003;
important to encourage the person who is dying to 57:131141.
also do things for others. Creating or affirming 5. McClain CS, Rosenfeld B, Breitbart W. Effects of spiritual well-
being on end-of-life despair in terminally ill cancer patients.
memories and leaving a legacy is suggested by
Lancet 2003;361:16031607.
Lynn and Harrold.27 This might include the patient
6. Murray SA, Kendall M, Boyd K, Worth A, Benton TF. Exploring
giving a copy of the holy book of her or his faith to the spiritual needs of people dying of lung cancer or heart fail-
a loved one (e.g., a grandchild), planning the ure: a prospective qualitative interview study of patients and
funeral service, making a point of reconciling with their carers. Palliat Med 2004;18:3945.
others, spending time to consider a mindful good- 7. Musgrave CF, McFarlane EA. Oncology and nononcology nurses
bye, and other means of making connection with spiritual well-being and attitudes toward spiritual care: a litera-
others, including teaching the nurse what matters ture review. Oncol Nurs Forum 2003;30:523527.
spiritually. 8. Volker DL. Assisted dying and end-of-life symptom manage-
Everyone dies, and while it is of no help to trivialize ment. Cancer Nurs 2003;26:392399.
an individuals experience by pointing this out in a 9. Johnstone P, Mandryk J. Operation World: 21st Century Edition.
Waynesboro, GA: Paternoster USA, 2001.
heedless manner, it may be helpful to carefully intro-
10. Burton LA. The spiritual dimension of palliative care. Semin
duce the universality of the experienceespecially
Oncol Nurs 1998;14:121128.
the fact that many others have struggled with pain, 11. Gallup International Institute. Spiritual Beliefs and the Dying
fear, guilt, and other core issues in dying and death. Process. Princeton, NJ: Gallup International Institute, 1997:.
All the major religions address the universality of 12. Nuland S. How We Die. New York: Alfred A. Knopf, 1994.
death and suffering. 13. Taylor EJ. Nurses caring for the spirit: patients with cancer and
Recall that hospice and palliative care emerged, in family caregiver expectations. Oncol Nurs Forum 2003; 30:
part, as humane responses to the increasingly tech- 585590.
nological nature of dying and death in the modern 14. Frankl V. The Will to Meaning. New York: New American Library,
world. The serious question, How can the spiritual 1969.
and sacred become more a part of the process, 15. Taylor EJ, Amenta M, Higheld M. Spiritual care practices of
oncology nurses. Oncol Nurs Forum 1995;22:3139.
arises both in terms of a particular patient and in
16. Saunders CM. Appropriate treatment, appropriate death. In: The
terms of institutions.
Management of Terminal Disease, Saunders CM, ed. London:
It is also important to always remember that key Edward Arnold, 1978:118.
concepts in palliative care are respect for the person 17. The Bible: Revised Standard Version. New York: Thomas Nelson
and protection of individual differences. Some & Sons, 1952.
patients and families may not want spiritual care, 18. Foster D. (1999). Personal communication.
and these preferences should be respected. 19. LeFavi RG, Wessels MH. Life review in pastoral counseling:
Prayer, invited and offered from the heart, is a background and efcacy for use with the terminally ill. J Pastoral
powerful means of caring for the patient, family, Care & Counseling 2003;57:281292.
and nurse. 20. Bhagavad-Gita. Translated by Swami Prabhavananda and C. Ish-
erwood., New York: Mentor Religious Classics, 1991.
And nally, the practice of mercyof watching through the 21. The Teaching of Buddha. Tokyo: Bukkyo Dendo Kyokai, 1981.
nightis central to hospice and palliative care and to the prac- 22. The Koran. Translated by N.J. Dawood. New York: Penguin
tice of every faith. Books, 1990.
23. Post-White J, Ceronsky C, Kreitzer MJ, Nickelson K, Drew D,
Mackey KW, Koopmeiners L, Gutknecht S. Hope, spirituality,
sense of coherence, and quality of life in patients with cancer.
references Oncol Nurs Forum 1996;23:15711579.
24. Green J. Death with dignity: Hinduism. Nurs Times 1989;85:5051.
1. Kemp CE. Terminal Illness: A Guide to Nursing Care, 2nd ed. 25. Jung CG. (1953). Psychology and alchemy. In: C.G. Jung: Psycho-
Lippincott Williams & Wilkins, Philadelphia, 1999. logical Reection, Jacobi J, Hull RFC, eds. Princeton: Princeton
2. Breitbart W. Spirituality and meaning in supportive care: University Press, 1953:338339.
spirituality and meaning-centered group psychotherapy inter- 26. Nelson CJ, Rosenfeld B, Breitbart W, Galietta M. Spirituality,
ventions in advanced cancer. Support Care Cancer 2002;10: religion, and depression in the terminally ill. Psychosomatics
272280. 2002;43:213220.
3. Baylor University School of Nursing Report of Self-Study. Dal- 27. Lynn J, Harrold J, The Center to Improve Care of the Dying.
las, TX: Baylor University School of Nursing, 1991. Handbook for Mortals. New York: Oxford University Press, 1999.
32o] Tami Borneman and Katherine Brown-Saltzman
Meaning in Illness
I cannot understand Gods timing . . . . theres so much left for me to do. Ive tried asking for more
time . . . it seems thats not going to be granted, but I have great faith that God knows more
than I do and that Hes watching over me.Cancer patient
In the driest whitest stretch

Of pains innite desert
I lost my sanity
And found this rose
Galal al-Din Rumi; Persia, 12071273
Key Points Is it possible to adequately articulate and give denition to

Finding meaning in illness is an important issue when facing the meaning in illness? Or is meaning in illness better described
end of life. and understood through using symbolism and metaphors
The process of nding meaning in illness involves a journey through such as the above poem? To try to dene that which is enig-
sometimes very difcult transitions. matic and bordering on the ineffable seems almost sacrile-
A terminal illness can greatly impact the patientcaregiver gious. The unique individual journey of nding meaning in
relationship. illness experienced by each patient facing the end of life and
It is essential for nurses to experience their own journey regarding their family caregiver would seem to be diminished by the very
the dying process and bring with them a willingness to be process that seeks to understand through the use of language.
transformed by it. Is it that we seek to nd meaning in illness or is it that we
seek to nd meaning in the life that is now left and in those
relationships and things we value? Do we seek to nd meaning
in illness itself as an isolated event or that which is beyond the
illness, such as how to live out this newly imposed way of life?
Terminal illness forces us to look at and possibly to reappraise
the meaning in and of our life.1 If we allow space in our lives
for the process of meaning in illness to unfold, we then move
from the supercial to the profound.
Terminal illness also forces us at some point to look directly
at death, yet we resist getting in touch with the feelings that
arise. Everything in us seeks life. Everything in us hopes for
life. Everything in us denies death. There is something very
cold, very unmoving, and very disturbing about it all. Does the
end of ones human existence on earth need to be the sole
metaphor for death?
Even though end-of-life issues have progressed nearer to
the forefront of health care, the dying patient is still the recip-
ient of an impersonal, detached, and cure-focused system,
thereby exacerbating an already catastrophic situation. As nec-
essary as it is for nurses to use the nursing process, it is not
enough. The patients illness odyssey beckons us to go beyond
assessment, diagnosis, intervention, and evaluation to a place
of vulnerability, not in an unprofessional manner but, rather,
in a way that allows for a shared connectedness unique to each
patient-nurse relationship. We need to be willing to use feel-
ings appropriately as part of the therapeutic process. Separat-
ing ourselves from touching and feeling to protect ourselves
605
606 Spiritual Care
only serves to make us more vulnerable, because we have then (p. 67). Finding meaning is not a stagnant process; it changes
placed our emotions in isolation. Nurses can be a catalyst for as each day unfolds and the occurrences are interpreted. As
helping the patient and family nd meaning in the illness, and, one patient reected upon her diagnosis, Cancer changes
in the process, help themselves dene or redene their own your perception of your world and life.6 Coming face to face
meaning in life, illness, and death. with ones mortality not only denes what is important
but also the poignancy of the loss of much that has been
meaningful.
o] Ones spirituality is often the key to transcending those losses
Meaning Dened and nding ways to maintain those connections, whether it is
the belief that ones love, work, or creativity will remain after
Johnston-Taylor2 presents several denitions for meaning the physical separation or the belief that ones spirit goes on to
(Table 321). In the dictionary,3 one nds meaning dened an afterlife or through reincarnation. Meaning in life concerns
simply as something that is conveyed or signied or as an the individuals realm of life on earth. It has to do with ones
interpreted goal, intent, or end. But it is the etymology of the humanness, the temporal, and the composites of what one has
word mean that helps nursing come to understand our poten- done in life to give it meaning. Meaning of life has more to do
tial for supporting patients in the process of nding meaning with the existential. It is looking beyond ones earthly physical
in their lives, even as they face death. Mean comes from the existence to an eternal, secure, and indelible God or spiritual
Old English maenan, to tell of. One does not nd meaning in plane. The existential realm of life provides a sense of security
a vacuum; it has everything to do with relationships, spiritual- whereby one can integrate experiences.7
ity, and connectedness. While the process of nding meaning Spirituality has been dened as a search for meaning.8 One
depends greatly on an inward journey, it also relies on the telling of the Hebrew words for meaning is biynah (bee-naw), which
of that journey. The telling may use language, but it may also is understanding, knowledge, meaning, and wisdom. It comes
be conveyed by the eyes, through the hands, or just in the way from the root word biyn (bene), to separate mentally or to
the body is held. Frankl4 reminds us that the will to meaning distinguish.9 How is it that one can come to knowledge and
is a basic drive for all of humanity and is unique to each indi- understanding? Patients receiving palliative care often describe
vidual. A life-threatening illness begs the question of meaning a sense of isolation and loneliness. They frequently have end-
with a new urgency and necessity. less hours available, while at the same time experiencing a
Cassell5 tells us that all events are assigned meaning, which shortening of their life. It is here that nursing has a pivotal role
entails judging their signicance and value. Meaning cannot as the listener, for when the ruminations of the dying are given
be separated from the persons past; it requires the thought of voice, there is an opportunity for meaning. Important life
future and ultimately inuences perception of that future themes are shared, and the unanswerable questions are at least
Table 321
Denitions of Meaning
Meaning . . . refers to sense, or coherence . . . A search for meaning implies a

search for coherence. Purpose refers to intention, aim, function . . .
However, purpose of life and meaning of life are used interchangeably.39
. . . a structure which relates purposes to expectations so as to organize
actions . . . Meaning . . . makes sense of actions by providing reasons
for it.40
Search for meaning . . . is an effort to understand the event: why it happened and what
impact it has had . . . [and] attempts to answer the questions(s), What is
the signicance of the event? . . . What caused the event to happen? . . .
[and] What does my life mean now.41
. . . is an attempt to restore the sense that ones life is orderly and
purposeful.42
Personal search . . . the process by which a person seeks to interpret a life circumstance.
for meaning The search involves questioning the personal signicance of a life
circumstance, in order to give the experience purpose and to place it in
the context of a persons total life pattern. The basis of the process is the
interaction between meaning in and of life and involves the reworking
and redening of past meaning while looking for meaning in a current
life circumstance.1
Meaning in Illness 607
asked. As the stranger develops intimacy and trust, meaning severe distress induced by the loss of the intactness of person,
takes hold. or by a threat that the person believes will result in the loss of
Suffering creates one of the greatest challenges to uncover- his or her intactness (p. 63). Suffering is an individual and
ing meaning. For the dying patient, suffering comes in many private experience and will be greatly inuenced by the per-
packages: physical pain, unrelenting symptoms (nausea, pru- sonality and character of the person; for example, the patient
ritus, dyspnea, etc.), spiritual distress, dependency, multiple who has needed control during times of wellness will nd
losses, and anticipatory grieving. Even the benets of medical the out-of-control experience of illness as suffering.5 In writ-
treatments given to provide hope or palliation can sometimes ing about cancer pain and its meaning, Ersek and Ferrell10 pro-
be outweighed by side effects (e.g., sedation and constipation vide a summary of hypotheses and theses from the literature
from pain medication), inducing yet further suffering. The (Table 322).
dictionary3 denes suffering in this way: To feel pain or dis- Although not always recognized, it is the duty of all who
tress; sustain loss, injury, harm, or punishment. But once care for patients to alleviate suffering and not just treat the
again, it is the root word that moves us to a more primitive physical dimensions of the illness. This is no small task, for
understanding, the Latin sufferer, which comprises sub,below rst, professionals must be free from denial and the need to
and ferre to carry. The weight and isolation of that suffering self-protect to see the suffering of another. Then, they must be
now becomes more real at the visceral level. Cassell5 reminds able to attend to it without trying to x it or simplify it. The
us that pain itself does not foreordain suffering; it is, in fact, suffering needs to be witnessed; in the midst of suffering,
the meaning that is attributed to that pain that determines the presence and compassion become the balm and hope for its
suffering. In his clinical denition, Suffering is a state of relief.
Table 322
Summary of Hypotheses and Theses from the Literature on Meaning
The search for meaning is a basic human need. Frankl 19594

Meaning is necessary for human fulllment. Steeves and Kahn 198743
Finding meaning fosters positive coping and increased hopefulness. Ersek 199144
One type of meaning-making activity in response to threatening Gotay 198545; Haberman
events is to develop causal attributions. 198746; Steeves and
Kahn 198743; Taylor
198341; Chrisman
197747
Meaning-making can involve the search for a higher order. Ersek 199144; Ferrell
et al. 199348; Steeves and
Kahn 198743
Making meaning often involves the use of social comparisons. Ferrell et al. 199348;
Taylor 198341; Ersek
199144; Haberman
198746
Meaning can be derived through construing benets from a Ersek 199144; Haberman
negative experience. 198746; Taylor 198341
Meaning sometimes focuses on illness as challenge, enemy, Barkwell 199149; Ersek
or punishment. 199144; Lipowski 197050
Pain and suffering often prompt a search for meaning. Frankl 19594; Steeves
and Kahn 198743; Taylor
198341
Uncontrolled pain or overwhelming suffering hinder the Steeves and Kahn 198743
experience of meaning.
One goal of care is to promote patients and caregivers search Ersek 199144; Ferrell et al.
for and experiences of meaning. 199348; Steeves and
Kahn 198743; Haberman
198851
608 Spiritual Care
o] that his wife depended on him to bring home a salary, so

The Process of Finding Meaning in Illness they kept the news of his illness even from close friends. He
exhausted himself trying to keep up with work and the image
From years of working with terminally ill patients and their that he was all right. When this was explored with him, he
families, the authors have found that the process of nding began to understand that he saw himself in limited functional
meaning in illness invokes many themes. The title given to ways, the contractor and the husband as a provider, and he
each theme is an attempt to represent observed transitions feared losing what had dened his life. Having him dene his
that many terminally ill patients seem to experience. Not all life in terms of meaning, expanding his past limited view gave
patients experience the transitions in order, and not all transi- him new insight and gradually allowed him to open up and
tions are experienced. However, we have observed that these share his prognosis with close friends.
transitions are experienced by the majority of patients. Issues In addition to questioning meaning in life, those facing the
faced by family caregivers and health care professionals are end of life also question the meaning of life. A life-threatening
discussed in later sections. The themes shared in this section illness makes it difcult to maintain an illusion of immortal-
are the imposed transition, loss and confusion, dark night of ity.12 What happens when we die? Is there really a God? Is it
the soul, randomness and absence of God, brokenness, and too late for reconciliation? For those believing in life after
reappraisal. In experiencing some or all of these transitions, death, the questions may focus on uncertainty of eternal life,
one can perhaps nd meaning in this difcult time of life. fear of what eternal life will be like, or the possibility of this
being a test of faith. No matter what the belief system, the
The Imposed Transition existential questions are asked. We reach out for a connection
with God or something beyond ones self to obtain some
Being told that you have a terminal illness can be like hearing sense of security and stability. Then, in this ability to tran-
the sound of prison doors slam shut. Life will never be the scend the situation, ironically, we somehow feel a sense of
same. The sentence has been handed down and there is no groundedness. Frankl4 states, It denotes the fact that being
reversing the verdict. Terminal illness is a loss, and there is noth- human always points, and is directed, to something or some-
ing we can do to change the prognosis even though we may be one, other than oneselfbe it a meaning to fulll or another
able to temporarily delay the nal outcome. The essence of our human being to encounter. There is an incredibly strong
being is shaken, and our souls are stricken with a panic unlike spiritual need to nd meaning in this new senseless and
any other we have ever felt. For the rst time, we are faced with chaotic world.
an existential awareness of nonbeing.11 For a brief moment,
the silence is deafening, as if suspended between two worlds, Loss and Confusion
the known and the unknown. As one regains consciousness,
so to speak, the pain and pandemonium of thoughts and emo- One cancer patient stated, Our lives are like big run-on sen-
tions begin to storm the oodgates of our faith, our coping tences and when cancer occurs, its like a period was placed at
abilities, and our internal fortitude, while simultaneously the the end of the sentence. In reality, we all have a period at the
word terminal reverberates in our heads. There is no easy or end of the sentence, but we dont really pay attention to it.13
quick transition into the acceptance of a terminal diagnosis. With a terminal diagnosis, life is changed forever, for however
Facing the end of life provokes questions. Not only is the long that life may be. Each day life seems to change as one is
question why me? asked, but questions regarding the mean- forced to experience a new aspect of the loss. There is a sense of
ing in ones life as well as the meaning of ones life.1 Whether immortality that pervades our lust for life, and when we are
we embrace with greater fervor the people and things that col- made to look at our mortality, it is staggering. With all of the
lectively give us meaning in life or we view it all as now lost, the many losses, coupled with the fear of dying, one can be left feel-
loss and pain are real. Nothing can be done to prevent the ing confused from the innite possibilities of the unknown.
inevitable. There is a sense of separation or disconnectedness The panorama of suffering seems to be limitless.
in that while I am the same person, I have also become perma- The pain of loss is as great as the pleasure we derived from
nently different from you. Unless you become like me, diag- life.14 The pain is pure and somewhat holy. The confusion comes
nosed with a terminal illness, we are in this sense, separated. In not only from ones world having been turned upside down, but
a rhetorical sense, the meanings we gain in life from relation- also from those who love us and care about us. It is not inten-
ships and the material world serve to afrm us as participants tional; nevertheless, its impact is greatly felt. In trying to bring
in these meanings.11 When these meanings are threatened by a encouragement or trying to help one nd meaning, the loss
terminal diagnosis, we fear the loss of who we are as function- and pain are sometimes minimized by comparing losses,
ing productive human beings. The afrmations we received attempting to save Gods reputation by denying the one hurt-
from our meanings in life are now at a standstill. ing the freedom to be angry at God, or, by immediately focus-
A 50-year-old contractor, determined to ght for his life ing on the time left to live. The hurting soul needs to feel the
despite his terminal prognosis, was not only combating cancer depth of the loss by whatever means it can. The pain from loss is
but also trying to hold onto who he was. If word got out that relentless, like waves from a dark storm at sea crashing repeat-
he had cancer, he feared that no one would hire him. He felt edly against rocks on the shoreline.
A 65-year-old woman with terminal lung cancer experi- Though one might try, there are no answers theological or
enced further physical decline each day. She was surrounded otherwise to the whys that engulf ones existence. Death moves
by a family who lovingly doted on her. She was one who loved from an existential phenomenon to a personal reality.18 All our
life and loved people. Many losses were experienced due to her presuppositions about life fall away and we are left emotion-
condition. What added to these losses was the fact that her ally naked. There is neither the physical, the emotional, nor the
family wanted her to focus on life and not her disease or death. spiritual strength to help our own fragility. The world becomes
They knew she was going to die but felt that her quality of life too big for us and our inner worlds are overwhelming.14 The
would be better if these issues were not discussed. The patient enigma of facing death strips order from ones life, creating
had many thoughts and feelings to sort through and wanted to fragmentation and leaving one with the awareness that life is
talk, but no one was listening. Her loss was not just physical; it no longer tenable.
also was an imposed emotional loss caused by a loving family
trying to do the right thing. The communications with her Randomness and the Absence of God
family were different, constantly reminding her that nothing
was the same, and, in turn, reminded her of her losses and The pronouncement of a terminal diagnosis provokes inner
impending death. turmoil and ruminating thoughts from dawn to dusk. Even in
ones chaotic life, there was order. But order does not always pre-
Dark Night of the Soul vail. A young athlete being recruited for a professional sport is
suddenly killed in a tragic car accident. A mother of three small
The descent of darkness pervades every crack and crevice of children is diagnosed with a chronic debilitating disease that
ones being. One now exists in the place of Nowhere sur- will end in death. An earthquake levels a brand new home that
rounded by nothingness that is void of texture and contour. a husband and wife had spent years saving for. A playful young
Ones signature is seemingly wiped away, taking with it the toddler drowns in a pool. There seems to be no reason. It would
identication of a living soul.14 Job states, And now my soul is be different if negligence were involved. For example, if the
poured out within me; days of afiction have seized me. At young athlete were speeding, or driving drunk, although still
night it pierces my bones within me, and my gnawing pains quite devastating, a logical reason could be assigned to the
take no rest . . . My days are swifter than a weavers shuttle, and loss. But randomness leaves us with no logical explanation.16
come to an end without hope.15 One enters the abyss of The word random comes from the Middle English word
emptinesswith the perverse twist that one is not empty of the radon, which is derived from the Old French word randon,
tortured feeling of emptiness.16 This is pains innite desert. meaning violence and speed. The word connotes an impetuous
Darkness looms as one thinks about the past, full of people and haphazard movement, lacking careful choice, aim, or pur-
and things that provided meaning in life, and will soon have to pose.3 The feeling of vulnerability is overwhelming. In an effort
be given up. Darkness looms as one thinks about the future, to nd shelter from this randomness, meaning and comfort is
because death precludes holding on to all that is loved and val- sought from God or from something beyond ones self, but how
ued. Darkness consumes ones mind and heart like re con- do we know that God or something beyond ourselves is not the
sumes wood. It makes its way to the center with great fury, cause of our loss? Our trust is shaken. Can we reconcile Gods
where it proceeds to take possession, leaving nothing but a sovereignty with our loss?16 Can we stay connected to and con-
smoldering heap of ashes and no hope of recovering any essence tinue to pull or gain strength and security from something
of life.17 beyond ourselves that may be the originator of our pain? There
A woman with young children relapsed after a bone mar- is a sense of abandonment by that which has been our strong-
row transplant and spent months in the hospital trying an hold in life. Yet to cut ourselves off from that stronghold out of
experimental protocol. She suffered greatly, not only from the anger would leave us in a state of total disconnection. A sense of
effects of the chemotherapy, but also from the long separations connection is a vital emotion necessary for existence, no matter
from her children. When it became clear that her leukemia had how short that existence may be. But facing death forbids us to
once again returned, she became tortured by the thought of keep our existential questions and desires at a distance. Rather,
abandoning her children at a time when they so greatly needed it seems to propel us into a deeper search for meaning as the
a mother, and the fact that she had gambled with the little time questions continue to echo in our minds.
she had left and had lost. Now too ill to return home, in her
mind, her children had the double loss of weeks of quality Brokenness
time she could have had with them and now her imminent
death. She became inconsolable because of this darkness. Time Does one come to a place of acceptance within brokenness? Is
to intervene was very limited. Allowing her the room for suf- acceptance even attainable? Sometimes. Sometimes not. Com-
fering, and being present to this suffering as a nurse, was ing to a place of acceptance is an individual experience for
essential. In addition, helping her to move back into her moth- each person. Kearney,19 in a wonderful analogy of acceptance,
ering role and providing for her children by helping to prepare states, Acceptance is not something an individual can choose
them for her death became the pathway through the darkness at will. It is not like some light switch that can at will be icked
and into meaning. on or off. Deep emotional acceptance is like the settling of
610 Spiritual Care
a cloud of silt in a troubled pool. With time the silt rests on the chemo go down the tube and into his body, and the sense of it
bottom and the water is clear(p. 98). Brokenness does, how- nally being all over. The patient shared with the young man
ever, open the door to relinquishing the illusion of immortal- that when he received his own last dose of chemotherapy, he
ity. Brokenness allows the soul to cry and to shed tears of stayed up until 3 in the morning to watch the last drop go
anguish. It elicits the existential question why? once again, down the tube. While the chemotherapy did not help him to
only this time not to gain answers but to nd meaning. the extent that he wanted, he wanted to encourage the young
A woman in her mid-60s, dying of lung cancer, shared how man to hope and not give up. Life was not yet over. He had
she came to a place of acceptance. When she was rst diag- tears in his eyes when he nished the story.
nosed, the cancer was already well advanced. Her health rap- Facing end of life with a terminal diagnosis will never be a
idly declined, and she was more or less conned to bed or happy event. It will always be tragic because it causes pain and
sitting. Out of her frustration, anger at God, sadness, and tears, loss to everyone involved. But at a time unique to each person
came the desire to paint again. It was her way of coping, but it facing death, a choice can be made as to whether one wants to
became more than that. It brought her to a place of peace in become bitter and devalue the remaining time, or value as
her heart. She had gotten away from painting due to busyness much as possible the time that is left.
and was now learning to be blessed by quietness. She was very An important choice to be made during this time is whether
good at replicating Thomas Kinkade paintings, and her nal to forgive or to be unforgivingtoward oneself, others,
picture, which was to be a gift, included many beautiful ow- God, or ones stronghold of security in life. Being unforgiving
ers. She was always surrounded by owers. breeds bitterness and superciality. As we face the end of life,
If we go back to the poem at the beginning of this chapter, it we need both an existential connection and a connection with
wasnt until sanity was lost that the rose was found. A gradual others. Being unforgiving separates us from those connec-
perception takes place whereby we realize that the way out is by tions, and it is only through forgiveness that the breech is
no longer struggling.19 When we come to the end of ourselves healed. Forgiveness neither condones anothers actions nor
and the need to ght the inevitable that is death, we give space does it mean that this terminal diagnosis is fair. Rather, for-
for meaning to unfold. It isnt that we give up the desire, but we giveness is letting go of expectations that one somehow will be
relinquish the need to emotionally turn the situation around vindicated for the pain and loss. Whether by overt anger or by
and to have all our questions answered. Sittser,16 a minister who emotional withdrawal, in seeking to avoid being vulnerable to
experienced a sudden loss of several immediate family mem- further pain and loss, we only succeed in making ourselves
bers, states, My experience taught me that loss reduces people more vulnerable. Now we have chosen a deeper separation
to a state of almost total brokenness and vulnerability. I did not that goes beyond facing the death of the physical bodythat
simply feel raw pain; I was raw pain(p. 164). Pain and loss are of the soul.16 Positive vulnerability through forgiveness pro-
still profound, but in the midst of these heavy emotions there vides a means of healing, and, when possible, reconciliation
begins to be a glimmer of light. Like the ame of a candle, the with others. It always provides healing and reconciliation with
light may wax and wane. It is enough to begin to silhouette ones God or ones stronghold of security. Forgiveness allows
those people and things that still can provide meaning. both physical and emotional energy to be used for creating
and enjoying the time left for living.
Reappraisal A 30-year-old woman was admitted to the hospital with
advanced metastatic breast cancer. She was unknown to the
It is here where one begins to realize that something positive hospital staff but had a good relationship with her oncologist.
can come from even a terminal diagnosis and the losses it During the admissions assessment, the young woman could
imposes. The good that is gained does not mitigate the pain of not give the name of anyone to contact in the event of an
loss, but, rather, fosters hope. Hope that is not contingent on emergency. When pressed, she stated that she was alienated
healing but on reconciliation, on creating memories with loved from her family and chose not to be in touch. She agreed that
ones, on making the most of every day, on loving and being after her death her mother could be called, but not before. A
loved.20 Its a hope that transcends science and explanations, social worker was summoned in the hope that something
and changes with the situation. It is not based on a particular could be done to help with some unication. However, the
outcome but, rather, focuses on the future, however long that social worker came out of the room devastated by the womans
may be. Despair undermines hope, but hope robs death of resolve. The chaplain also found no way to reconnect this
despair.21 womans family. The nursing staff experienced moral distress
A male patient in his late 30s, facing the end of life after bat- as they watched this woman die, all alone in the world. One of
tling leukemia and having gone through a bone marrow trans- the authors worked with the staff to help them realize that they
plant, shared that he knew he was going to die. It took him a had become trusted and in a sense were her substitute family.
long time to be able to admit it to himself. The patient recalled One may not always be able to x the pain of lifes fractures or
recently visiting a young man who had basically given up and bring people to a place of forgiveness, but it is important not
did not want his last dose of chemotherapy. He talked a while to underestimate what is happening in the moment. Healing
with this young man and encouraged him to go for it. He for this patient came through the relationship with her doctors
told him that theres nothing like watching the last drop of and nurses, and she died not alone, but cared for.
There are many emotions and issues with which those fac- short, and she would not live to see her grandchildren grow.
ing death must contend. It is not an easy journey and the pro- She and her husband had made plans to travel and now she
cess is wearing; nevertheless, the rose can be found. was too ill to make even one of the trips. She made life difcult
for those who loved her. She made loving her and caring for
her difcult. No one could seem to do anything right. She was
o] bothered by company yet wanted someone with her all the
Impact of the Terminal Illness on time, and she did not like the intrusion of health care profes-
the PatientCaregiver Relationship sionals in her home. She felt that her physician and family had
given up on her and she resented it. She died a very angry and
Each of us comes to new situations with our lifes experiences unhappy woman. This was extremely difcult for her family.
and the meanings we have gained from them. It is no differ- The family was left feeling rather fragmented. What exactly
ent when being confronted with illness and the end of life. did all of this mean? They had spent so much time trying to
However, in this special episode of life, there are often no per- please the patient, which was almost impossible, that they
sonal reruns from which to glean insight. Patient and family never had time to synthesize the events and their feelings
come together as novices, each helping the other through this regarding the whole terminal illness trajectory. Not only did
unknown passage. Because different roles and relationships the family have their own pain from loss, they were left with
exist, the impending loss will create different meanings for nal memories that created negative meanings. For example,
each person involved. various family members had begun to withdraw emotionally
Facing the loss of someone you love is extremely difcult. from the patient out of hurt and frustration, yet felt guilty for
For the family caregiver, the process of nding meaning can abandoning her. After her death, those family members still
either be facilitated or hindered by the meaning held by the felt guilty because they had really wanted to be with her.
one facing death.22 One example experienced by one of the These actual patient stories were given to exemplify how the
authors of this chapter involved a wifes short discussion with patients meaning in illness affects the meaning held or created
her terminally ill husband on the subject of heaven. She asked by family members. Differing or divergent meanings can be
him if he thought he was going to heaven and if he was, would detrimental in a relationship, or they can be used to strengthen
she be able to be with him even though she was from a dif- it, thereby increasing the quality of time left together. That is
ferent religion. He assured her that they would someday be not to imply that the patient is responsible for the meaning
together in heaven, and an immediate sense of peace came created by family members, but how one affects the other. Ger-
over his wife. He was not looking forward to dying, but for mino, Fife, and Funk22 suggest that the goal is not merely con-
him, his death was not the end. He would see her again. His verging meanings within the patient-family dyad, but, rather,
own meaning of death helped create a whole new meaning for encouraging a sharing of individual meanings so that all can
his wife. He imparted to her a sense of eternal connection that learn, and relationships can be deepened and strengthened.
allayed her fears of eternal separation from the most impor- There are many issues that family caregivers face in caring
tant person in her life. She could now face his death, with sor- for a loved one nearing the end of life. They are discussed at
row, but without fear. length in the literature. There is one issue, however, that war-
In another example, a woman helped her family create rants more attentionthe loss of dreams. The loss of dreams
meaning for themselves from the picture she had painted of for a future with the person is in addition to the loss of the per-
herself sitting on the beach as a little girl next to a little boy. son. It is the loss of the way one used to imagine life, and how
She explained that the little boy had his arm around her as it would have been with that person. It is the loss of an emo-
they stared out at the sea. Each time the waves covered the sur- tional image of oneself and the abandonment of chosen plans
face of the beach and then retreated, the sea would carry with for the future and what might have been.24
it bits and pieces of her fears and disease. The birds circling For a child and the surviving parent, those losses of dreams
overhead would then swoop down to pick up and carry off any will be played out each time Mother or Fathers Day arrives and
pieces not taken by the sea. The little boys arm around her sig- important life-cycle events, such as graduations, weddings, or
nied all the loving support she had received from others. the birth of the rst grandchild. As her mother lay dying, one
When the time would come for her to die, she would be ready child expressed that loss in the simple statement,Mommy, you
because she had been able to let go of life as she knew it. She wont be here for my birthday! The mother and child wept,
had let the waves slowly carry that which was of life out to sea holding and comforting each other. Nothing could change the
and yet had learned to hold on to the meaning that that life loss, but the comforting would remain forever.
had represented. In doing so, she enabled her family to hold on The loss of dreams is an internal process, spiritual for some,
to the meaning of their relationship with her and to realize seldom recognized by others as needing processing.2427 Nurses
that they would never be separated from that meaning.23 have a wonderful opportunity at this point to verbally recog-
A nal poignant story offers a different perspective. A 53- nize the family caregivers loss of dreams and to encourage
year-old woman with stage IV ovarian cancer was very angry them in their search to nd meaning in the loss. The ability to
at everyone and everything and could not seem to nd any transcend and connect to God or something greater than ones
positive meaning. She was angry that her life would be cut self helps the healing process.
612 Spiritual Care
o] room and relies only on offering prayer to the patient, prevent-

Transcendence: Strength for ing any real discourse or relationship building. The patients
the Journey That Lies Ahead personhood has been diminished and, potentially, more harm
than good has been done.
Transcendence is dened as lying beyond the ordinary range of So let us revisit to tell of. What is required of the profes-
perception; being above and independent of the material uni- sional who enters into the healing dimension of a patients suf-
verse. The Latin root is trans-, from or beyond, plus scandere, fering and search for meaning? It would seem that respect may
to climb.3 The images are many: the man in a pit climbing his be the starting point, respect for that individuals way of expe-
way out one handhold at a time; the story of Job as he endured riencing suffering and attempts of making sense of the illness.
one defeat after another and yet found meaning; the climber Secondly, allow for an environment and time for the telling.
who reaches the mountaintop, becoming closer to the heavens Even as this is written, the sighs of frustration are heard, We
while still having the connection to the earth; or the dying have no time! If nursing fails at this, if nurses turn their backs
patient who, in peace, is already seeing into another reality. on their intrinsic promise to alleviate suffering, then nursing
The ability to transcend truly is a gift of the human spirit and can no longer exist. Instead, the nurse becomes simply the
often comes after a long struggle and out of suffering. It is often technician and the schedulerthe nurse becomes a part of the
unclear which comes rstdoes meaning open the door for problem. She has violated the Code for Nurses that states,
transcendence or, quite the opposite, does the act of transcen- Nursing care is directed toward the prevention and relief of
dence bring the meaning? More than likely, it is an intimate the suffering commonly associated with the dying process . . .
dance between the two, one fueling the other. In the Buddhist and emphasizes human contact.29
tradition, suffering and being are a totality, and integrating suf- If patients in the midst of suffering receive the message,
fering in this light becomes an act of transcendence.28 nonverbal or directly, that there is no time, energy, or compas-
Transcendence of suffering can also be accomplished by sion, they will, in their vulnerability, withdraw or become more
viewing it as reparation for sins while still living, preparing the needy. Their alienation becomes complete. On the other hand,
way for eternity, as in the Islamic tradition. In other traditions, if privacy and a moment of honor and focused attention are
transcendence is often relationship based, the connection to provided, this allows for the tears to spill or the anguish to be
others, and sometimes to a higher power.4 For example, the spoken. Then the alienation is broken, and the opportunity for
Christian seeing Christ on the cross connects one to the rela- healing one dimension is begun. The terminally ill are a vul-
tionship and endurance of God and the reality that suffering is nerable population. They die and do not complete patient sat-
a part of life. For others, it is nding meaning in relating to isfaction surveys; their grievances, and their stories die with
others, even the act of caring for others. And for some, that them. But the violation does not, for each nurse now holds that
relationship may be with the earth, a sense of stewardship and violation, as does society as a whole. The wound begets
leaving the environment a better place. It is rare that patients wounds, and the nurse sinks further into the protected and
reach a state of transcendence and remain there through their unavailable approach, alienated herself. The work holds no
dying. Instead, for most it is a process in which there are rewards, only endless days and demands. She has nothing left to
moments when they reach a sense of expansion that supports give. The patient and family are ultimately abandoned. In the
them in facing death. The existential crisis does not rule, work of Kahn and Steeves,30 one nds a model for the nurses
because one can frame the relationship beyond death; for role in psychosocial processes and suffering. It represents the
example, I will remain in their hearts and memories forever, I dynamic relationship of caring, acted out in caregiving as well
will live on through my children, or my spirit will live beyond as in the patients coping, which transform each other.
my limited physical state. For the nurse to provide this level of caregiving, she must
understand the obstructions that may interfere. It is essential
that the nurse undergo her own journey, visiting the intense
o] emotions around the dying process and the act of witnessing
Nursing Interventions suffering. We can serve the suffering person best if we our-
selves are willing to be transformed through the process of our
If one returns to the root word of meaning, maenan, to tell own grief as well as by the grief of others.31 Presence may, in
of, this concept can be the guide that directs the nurse toward fact, be our greatest gift to these patients and their families.
interventions. Given the nature of this work, interventions Still, imagine charting or accounting for presence on an acuity
may not be the true representation of what is needed. For system! Presence transcends role obligations and acknowl-
intervention implies action that the nurse has an answer and edges the vulnerable humanness of us all . . . to be present
she can direct the course of care by intervening. It is dened as means to unconceal, to be aware of tone of voice, eye contact,
To come, appear, or lie between two things. To come in or affect, and body language, to be in tune with the patients
between so as to hinder or alter an action.3 But nding mean- messages.31 Presence provides conrmation, nurturing, and
ing is process oriented; while nely honed psychosocial skills compassion and is an essential transcendent act.
and knowledge can be immensely helpful, there is no bag of Touch becomes one of the tools of presence. Used with sen-
tricks. One example would be of a chaplain who walks in the sitivity, it can be as simple as the holding of the hand, or as
powerful as the holding of the whole person. Sometimes, direct their course and what they leave behind. For some
because of agitation or pain, direct touch becomes intrusive; patients, that will mean going out as warriors, ghting till the
even then touch can be invoked, by the touching of a pillow, end; for others, it will mean end-of-life planning that focuses
the sheet, or the offering of a cold cloth. Healing touch takes on quality of life. Some patients will design their funerals,
on another level of intention through the directing energy of using rituals and readings that reveal their values and mes-
prayer. sages for others. Others will create videos, write letters, or
If a key aspect of meaning is to tell, then one might be led distribute their wealth in meaningful ways. Parents who are
to believe that the spoken word would be imperative. Yet over leaving young children sometimes have the greatest difculty
and over, it is silence that conveys the meaning of suffering, a with this aspect. On one hand, the feelings of horror at aban-
primitive form of existence that is without an effective voice doning their children are so strong that they have great dif-
and imprisoned in silence. Compassionate listeners in respect culty facing their death. Still, there is often a part of them that
and presence become mute themselves.31 They use the most has this need to leave a legacy. The tug-of-war between these
intuitive of skills to carry the message. This may also be why two willful emotions tends to leave only short windows of
other approaches that use symbols, metaphors, and the arts opportunity to prepare. The extreme can be the young father
are the most potent in helping the patient to communicate who began to push his toddler away, using excuses for the dis-
and make sense of meaning. The arts, whether writing, music, tancing. It was only after a trusting relationship had been
or visual arts, often help the patient not only gain new insight, established with one of the authors that she could help him to
but convey that meaning to others. There are many levels on see how this protective maneuver was, in fact, harming the
which this is accomplished. Whether it is done passively, child. The father needed not only to see what he was doing, but
through reading poetry, listening to music, or viewing paint- to see how his love would help the child and how others would
ings, or actively through creation, thoughts can be inspired, be there for the child and wife in their pain and grief. With
feelings moved, and the sense of connectedness and being relief, the father reconnected to his young son, creating living
understood can evolve. What once was ubiquitous can now be memories and a lifetime protection of love.
seen outside of ones soul, as feelings become tangible. It can Another courageous parent anticipating the missed birth-
be relational, because the act of creation can link one to the days, bought cards and wrote a note in each one, so that the
creator, or it can downplay the role of dependency, as the ill child would be touched not only by the individual messages,
one now cares for others with a legacy of creational gifts.32 but the knowledge that the parent found a way to be there for
Meditation is another act of transcendence that can be him with each new year. A mother wrote a note for her young
extremely powerful for the dying.33,34 Even those who have daughter, so that if she should ever marry, she would have a gift
never experienced a meditational state can nd that this new to be opened on her wedding day. The note described the
world in many ways links them to living and dying. The relax- mothers love, wisdom about marriage, and her daughters spe-
ation response that allows the anxious patient to escape into a cialness, already known through a mothers eyes. An elderly
meditative state, experiencing an element of control while person may write or tape an autobiography or even record the
relinquishing control. Many patients describe it as a oating family tree lest it be lost with the passing of a generation. The
state, a time of great peace and calm. Some, who have never had nurse can often be the one who inspires these acts, but always it
such an experience, can nd the rst time frightening, as the must be done with great care so as not to instill a sense of
existential crisis, quelled so well by boundaries, is no longer should or must, which would add yet another burden.
conned. Most, given a trusting and safe teacher, will nd that Helping patients to reframe hope is another important
meditation will serve them well. The meditation can be in intervention. Recently, Dr. William Brietbart, Chief of the Psy-
the form of prayer, guided imagery, breathing techniques, or chiatry Services at Memorial Sloan-Kettering Cancer Center in
mantras. New York City, designed and conducted research on a meaning-
Prayer is well documented in the literature35,36 as having centered psychotherapeutic intervention to help terminally ill
meaning for patients and families; not only does it connect patients with cancer maintain hope and meaning as they face
one to God, but it also again becomes a relational connection the end of their lives.38 This research was inspired by the works
to others. Knowing that one is prayed for not only by those of Dr. Victor Frankl, a psychiatrist and Holocaust survivor.
close at hand, but by strangers, communities, and those at a Cancer patients attended an 8-week, group-focused, standard-
great distance can be deeply nurturing. Often forgotten is the ized course of experiential exercises that addressed constructs
role the patient can be empowered in, that of praying for oth- of despair at the end of life such as hopelessness, depression,
ers. One of the authors experienced her patients prayers for loss of meaning, suicidal ideation, and desire for a hastened
her as the tables were turned, and the patient became the healer. death. What was discovered during the study was that the
The patient suddenly lost the sense of worthlessness and patients spiritual well-being, loss of meaning in part, was more
glowed with joy. highly correlated to the components that made up despair at
Leaving a legacy may be one of the most concrete ways for the end of life than either depression or hopelessness alone. As
patients to nd meaning in this last stage of their lives.37 It a result, if the patient could manipulate or reframe his/her
most often requires the mastering of the existential challenges, sense of meaning and spiritual well-being, this would posi-
in which patients know that death is at hand and choose to tively affect the foundational elements of despair at the end of
614 Spiritual Care
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family caregiver expectations. Oncol Nurs Forum 2003;30:585590. 46. Haberman MR. Living with leukemia: the personal meaning
36. Albaugh JA. Spirituality and life-threatening illness: a phenome- attributed to illness and treatment by adults undergoing bone
nologic study. Oncol Nurs Forum 2003;30:593598. marrow transplantation [Unpublished doctoral dissertation].
37. Kaut K. Religion, spirituality, and existentialism near the end of Seattle: University of Washington, 1987.
life. Am Behavioral Scientist 2002;46:220234. 47. Chrisman H. The health seeking process: an approach to the
38. Breitbart W. Reframing hope: meaning-centered care for natural history of illness. Culture, Med Psychiatry 1977;1:351377.
patients near the end of life. Interview by Karen S. Heller. J Pal- 48. Ferrell BR, Taylor EJ, Sattler GR, Fowler M, Cheyney BL. Search-
liat Med 2003;6:979988. ing for the meaning of pain: cancer patients, caregivers, and
39. Yalom ID. Existential Psychotherapy. New York: Basic Books, 1980. nurses perspectives. Cancer Pract 1993;1:185194.
40. Marris P. Loss and Change, 2nd ed. London: Routledge and 49. Barkwell DP. Ascribing meaning: a critical factor in coping and
Kegan Paul, 1986. pain attenuation in patients with cancer-related pain. J Palliat
41. Taylor SE. Adjustment to threatening events: a theory of cogni- Care 1991;7:510.
tive adaptation. Am Psychology 1983;38:11611173. 50. Lipowski Z. Physical illness, the individual and their coping pro-
42. Thompson SC, Janigian AS. Life schemes: a framework for cesses. Int J Psychiatry Med 1970;1:101.
understanding the search for meaning. J Soc Clin Psychol 1988; 51. Haberman MR. Psychosocial aspects of bone marrow transplan-
7:260280. tation. Semin Oncol Nurs 1988;4:5559.
43. Steeves RH, Kahn DL. Experience of meaning in suffering. Image: 52. Albom M. Tuesdays with Morrie. New York: Doubleday, 1997:
J Nurs Scholarship 1987;19:114116. 174.
33o] Ruth Yorkin Drazen
Reecting on the Journey: A Family

Caregivers Personal Perspective
We are all precious members of this universe and are here to make it a bit better through our resolve
as honest, sincere partners in every moment.
I rst met Ruth and Jerry in the summer of 1987. Jerry had It is 18 years since that fatal Monday morning when Jerry
advanced prostate cancer, and both he and Ruth were working went into his nal sleep. As I sat on his bed in the hospital with
hard to maintain a quality of life that gave continued meaning a nurse, sharing that unbelievable moment in our lives, she
and purpose to their existence. After Jerrys death, Ruth contin- quietly kept on encouraging meLet him y away and be
ued to be part of our Pain and Palliative Care Service, always free. I would touch his body that contained all the warmth of
vocal with suggestions and always eager to come up with ways to life and felt my unreality.
help patients and families live to their fullest potential in the face How could this be all over, I asked myself. Jerry never gave
of advancing disease as she and Jerry had strived to do. Commu- up. We had a game through all this. He would ask If I make
nication was a constant themecommunication between patients it to 85, is that good enough? I always responded in the nega-
and their doctors. tive. If the number is in the 90s? I always said it was still not
Out of this urge to improve communication, four lms were good enough. Our marriage of 28 years was like 28 days. As I
born. The rst was an outgrowth of Ruths experience with the recall it 18 years later, it was a shared journey.
staff. She wondered what happened when a member of the staff Fortunately, the nurse was there to accompany me in those
or a member of their family got cancerwhat happened to them painful moments. When the funeral director asked me whether
as a person. The documentary When Doctors Get Cancer was any family members wanted to say their goodbyes, I remained
an outgrowth of that question and Ruths rst venture into the alone and asked the nurse to go with me. I had the rst reality
world of lmmaker as a producer and director. Her second lm, shock when I kissed Jerrys face and experienced his cold, stone-
Cancer: A Personal Voyage, grew out of the rst lm. Ruth had like body shouting in my ear, I am no longer of your world.
become friends with Peter Morgan, the youngest physician who The burial was a blur of in-and-out detachment. I only recall
participated in her lm. After Peters death, his family, having covering Jerry with natures blanket and asking him to wait for
seen Ruths rst lm, shared with her his diary, which detailed me to meet him again.
his journey with cancer. Cancer: A Personal Voyage, tells of his The months following Jerrys death were complicated. I felt
moving and courageous journey. Her third documentary, Less a sense of abandonment. Yet, at the same time, I realized that I
Pain More Love, depicts the struggle of children with cancer. had the devotion of a few precious professionals who had been
In the meantime, Ruths life was bound up in the life and work Jerrys caregivers both in New York and California. Even
of Viktor Frankl. She found that no philosophy worked better for though we lived in New York City, Jerry chose to receive part of
her than that of Frankl. She wanted people to recognize that the his care at a hospital in California because of their expertise in
greatest thing we have is the other, and she works to enable treating prostate cancer with radiation when surgery was not
people to improve their lives through developing a meaningful an option. He traveled to California every 4 months for 9 years.
mindset. Her fourth documentary, Frankls Choice, also known The constancy of caring that I received from my friends at
as The Choice is Yours, was born out of wanting to share with the cancer center was sacred to me. They understood my grief
others what she had learned from Frankl. Ruth reects on her in countless loving ways. One particular time stands out in my
own journey in the following piece.Nessa Coyle memory. One Saturday morning, our Sabbath and our most
holy day, Yom Kippur, I was sitting at my husbands bedside
reading my prayer book when the door opened slightly. A
hand motioned for me to come out into the hall. Here stood
the neurologist who was treating Jerry for his severe pain. She
617
618 Spiritual Care
stated that she had come to be with me on this day. We spent has been my learning eld. Experiencing the pain of Jerrys
the day together in silence until sundown. I was overwhelmed. death, yet having the staying power to remain constant to my
The nurse, two of our physicians, and the hospital rabbi feelings in some indescribable way, opened up a creative uni-
became family in ways that strengthened me and prepared verse for me. Producing my lms enabled me to express my
me to live in my new world. Grieving for each person is longings and my vision for those I may never meet but trea-
unpredictable. Jerry died on December 7, 1987. Our resident at sure in my being.
the California Medical Center had grown very attached to us. During Jerrys bout with cancer, he uncovered the wisdom
We loved him. He phoned me regularly after Jerrys death, of Viktor Frankl in Mans Search for Meaning. Frankl became
always checking on me. One dismal Friday February after- my companion after Jerry was gone. His philosophy guided
noon, the resident phoned to say that his chief had arranged me through my darkest moments, teaching me that each of us
for him to have a radiation rotation in New York. He was com- has the capacity to transcend pain and disappointment. My
ing to stay with me. This was a miracle. I realized he wanted to creative journey has brought me into the lives of such remark-
help me in my grief. In spite of the disparity in age, we did able people, and even though several of them are no longer
things together. We exercised together, took walks together, here, they remain alive in different ways. I believe their con-
cooked together, and most of all, laughed together. It was truly tributions seen on lm will continue to benet those who view
heaven until he had to return to California. On reection, them. Each documentary has its own particular message. My
though many years ago, I still feel the capacity of this young lm devoted to Frankl incorporates his concepts. I apply them
man to empathize with the loneliness of another human being to my daily life, inspiring me to give the best of myself to what-
in those difcult days. He saw the need to rescue me. The ever task I undertake.
capacity to nd a new routine requires a good friend when Living in the moment, every moment, has offered me
family is unavailable. rewards that are sometimes overwhelming. My responsibility
As I ruminated on the future, I decided to go to Fordham is to be the best I can be in my daily tasks, from which I must
University, which was a 10-minute walk from my apartment. not run. I nd it helps me to acknowledge lifes hurts, bruises,
During Jerrys illness, he had gone to Fordham and had and disappointments, yet enables me to move on to a better
thrived in that setting. In fact, I am certain that he tolerated his space. Bringing something of beauty into each day is a contin-
illness in remarkable ways because he had an environment that uing aspect of my agenda. Regardless of lifes pressures, the
enabled him to realize the joy of learning was there for him. In ability to feed myself is essential. I awaken daily to Frankls
1989, I enrolled as a student at Fordham University Jerry had exercise of quickly naming the 10 best things in my life. I have
been gone for 2 years. My 212 years there stimulated me beyond found that they are always changing, which opens my mind to
belief. Life began to resonate again. Rediscovering the gift of look, see, and be part of this glorious world. I reach for a
learning energized my soul. It was then I became conscious of favorite CD (Gustav Mahler), a poem, my memory bank, or
how I wanted to use whatever time would be allotted me on some experience that I treasure. I have tested this system
this earth. It was blatantly clear that my life with Jerry would recently under a time of great personal stress and pain and can
enable me to give to others as we had totally given to each conrm its effectiveness. I believe caregivers in our society face
other. I started dreaming of how I might use my time to inu- constant challenges that surely require them to nurture them-
ence others who needed to discover ways of developing a selves. It is only then that they can have the capacity to enter
meaningful mind-set. My passion to reach for the moon into and fully participate in the struggle of another.
might seem bizarre, but I decided to go for it. The philosophy of Martin Buber explains the signicance of
One afternoon I visited the New York neurologist who had the moment when we are called on to dialogue with another. It
cared for Jerry over the years, feeling comfortable to share my takes discipline and constant emotional energy to be able to
wild ideas with her. I explained how lucky Jerry had been to feel the Thou of the other under powerful conditions. We all
have me as his advocate. I told her that I had observed time need to be understood and to be treated with respectI did
and time again that most patients and families seemed unable and do. Buber demonstrates the hurtfulness when one is per-
to have an honest exchange with their physicians because nei- ceived psychologically as an It. A part of the divine is within
ther party seemed to understand the value of true dialogue. To each of us and requires us to honor the other.
overcome this situation, I told her that I wanted to make a doc- In retrospect, witnessing Jerrys suffering was my real chal-
umentary involving physicians who had cancer. Her response lenge. Over the 10 years he had cancer, we worked at our respec-
was that Hollywood had made one recently; further, did I have tive professions, always striving to live in a better space. One of
the funds for this idea? When it was clear that I was a novice in my greatest pleasures was to read to him. In those last months
lmmaking, the neurologist said to come back when I had the at the Cancer Center in New York, Jerry and I meditated twice
money. It took me 2 years to nd the funds, but, with them, I daily. We visualized the cancer cells being washed away. Many
found my life. I was now 75 years old. times it was like magic. He would announce I feel terric! Lets
In the 10 years that have followed, my life has been an adven- walk on the Champs Elyses (the corridor around the nursing
ture. I have produced four documentaries, each of which has station). The corridors were lled with prints of great painters,
enabled me to uncover a part of myself, continuously unlocking many of which were impressionists. He would walk with his
the mystery of living. I am convinced that my psychic suffering aluminum canes, viewing the pictures as we had done in the
Reecting on the Journey: A Family Caregivers Personal Perspective 619
museums. There was a Monet, The Beach At St. Addresse, waiting room during my session, as I did during his session.
which was his favorite. One night he awakened at 2 am as I Jerry elucidated his wishes that had probably been in his mind
slept on a cot in his room, asking me to take the print from our for many weeks. He had the analyst take an oath that he would
room and exchange it for the Monet. As you can imagine, I never abandon methat would enable him to die in peace.
quickly slipped into my robe, took our masterpiece under The oath asked of me was powerfulJerry said, I have had
my arm, secretly and softly removing the Monet and hanging my care at two hospitals. I have thought of mistakes in both
the other in its place. Suddenly, the night nurse appeared. of them. But, as a lawyer, I can tell you, we all make mistakes,
What are you doing at this hour of the night, Ruth? she ques- though most of us wont admit it. I have made plenty of mis-
tioned. I pleadingly explained that Jerry loved the Monet as takes in my life. So, I want you to swear that when I am gone,
she insisted that I had no right to move the picture from that you will never fault them. They did the best they could and I
wall. Since I already had it in hand, I told her Jerry had such a love them. I agreed as we both reected on that memorable
limited time to enjoy it and, therefore, it should be on loan day. Then I lit the incense and we held hands.
for the duration of his stay. I marched back with it, and at that My struggle was bound up in separation. I wanted to have
hour he was able to express his delight. Jerry inside of me when we were not together and this I accom-
One memorable dialogue with me took place after the sur- plished. I was able to recall him at any momentduring a meet-
geon informed him that he was coming down to the wire, ing or alone on a bus, he could be present in my psyche. By giving
and it appeared that there was nothing of benet that could be Jerry my best, I never betrayed myself. As an octogenarian, life
offered. Jerry asked that I close the door. Alone with him, he glistens for me in countless ways. Blessings abound: good
insisted that I take an oath (this he had discovered to be a com- health . . . my son . . . family, though far away . . . my work . . .
forting and reassuring way to share his deepest concerns). and a few precious friends. With each day, I hope I can return the
Before his last hospital admission, Jerry determined he wanted innite goodness life has given me. We are all precious members
to go to my analyst. The doctor gave him an appointment right of this universe and are here to make it a bit better through our
after mine. I took him in his wheelchair, and he waited in the resolve as honest, sincere partners in every moment.
V
Special Patient Populations
o]
34o] Polly Mazanec and Joan T. Panke
Cultural Considerations in Palliative Care

My mother went to the doctors like they said. But it was prayer and her healer that got her here
this long. She is a cancer patient now, this year. But she has been a proud Indian woman all
her life.A daughter
Key Points This chapter denes culture and its components as they relates
A multidimensional assessment of culture is essential to to palliative care. It addresses cultural competence and the
planning palliative care for patients and families. importance of recognizing how ones own values, practices,
An individuals culture includes ethnicity, sexuality, family history, and beliefs impact care. Finally, selected palliative care issues
religion, and many other aspects. inuenced by culture are discussed. This chapter is not
Issues of culture are important throughout any aspects. intended to be a cookbook approach to describing behaviors
experience but are crucial in life-threatening disease. and practices of different cultures as they relate to palliative
care, but, rather, a guide to raising awareness of the signi-
cance of cultural considerations in palliative care.
o]
Culture and Palliative Care Nursing
The essence of palliative nursing is to provide holistic support-

ive care for the patient and the family living with a life-limiting
illness. Palliative nursing strives to meet the physical, emotional,
social, and spiritual needs of the patient and family across the
disease trajectory.1 In an effort to meet these needs, nurses must
recognize the vital role that culture has on ones experience of
living and dying. The beliefs, norms, and practices of an indi-
viduals cultural heritage guide ones behavioral responses,
decision-making, and actions.2 Culture shapes how an individ-
ual makes meaning out of illness, suffering, and death.2,3 Nurses,
along with other members of the interdisciplinary team, partner
with the patient and family to ensure that patient and family
values, beliefs, and practices guide the plan of care.
The following case illustrates the distress experienced by
the patient, family, and health care team when cultural impli-
cations of care are not considered.
9=
case study
Mrs. Wu, a Patient with Lung Cancer
Mrs. Wu, a 78-year-old Chinese American woman, was
diagnosed 7 months ago with nonsmall cell lung cancer.
623
624 Special Patient Populations
Table 341
Panethnic Groups: Nations of Origin
Panethnic Groups Nations of Origin

American Indian / 200 American Indian nations indigenous to North American Aleuts,
Alaskan native and Eskimos in Alaska
Asian/ China, Japan, Hawaii, the Philippines, Vietnam, Asian India,
Pacic Islander Korea, Samoa, Guam, and the Remaining Asian/Pacic islands
Black West coast of Africa; many African countries; West Indian islands,
Dominican Republic; Haiti; Jamaica
Hispanic Hispanic countries, Spain, Cuba, Mexico, Central and South
America, Puerto Rico
White Germany, England, Italy, Ireland, Former Soviet Union, and all
other European countries
Source: Spector, Rachael E. Cultural care: Guides to heritage assessment and health traditions, 5th edition. 2000.
Reprinted by permission of Pearson Education, Inc., Upper Saddle River, NJ. (Reference 52)
She is admitted to the oncology unit of the hospital with o]

severe dyspnea and weakness. Her husband died several Increasing Diversity in the United States Population
years ago, and she has been living with her eldest unmarried
son, who has taken a leave of absence from work to care for As the United States becomes increasingly diverse, the range of
her. When asked how she is feeling, she states she is fine treasured beliefs, shared teachings, norms, customs, and lan-
and reports no symptoms. The nurses note that she appears guages challenge the nurse to understand and respond to a
to be in severe pain, wincing with a furrowed brow and wide variety of perspectives. In 2000, the population in the
moaning with any movement. The son does not want his United States exceeded 280 million people.4 Population statis-
mother sedated with pain medication and tells the nurses tics illustrate that cultural diversity is increasing among the ve
No one is to tell my mother that she has cancer. We have most common pan-ethnic groups, which are federally dened
not told her and do not want her to know because she as American Indian/Alaskan native, Asian/Pacic Islander,
would give up hope. Mrs. Wus only other child, a married black, Hispanic, and white (Table 341). By 2030, the popula-
son who lives 500 miles away, has come to visit and speaks tion of Hispanic and Asian/Pacic Islander will nearly double
privately with the nurse. He tells the nurse that he under- that of 1998. Immigrants and their children will account for
stands his mother is very ill and dying, but he must respect nearly one half of the growth of the U.S. population.4 Trends
his brothers decisions about his mothers care. The nursing suggest that by 2050, one out of every two Americans will
staff believes Mrs. Wu is suffering needlessly and should be claim membership from what is currently an ethnic minority.4
fully informed of her diagnosis and prognosis. The nurses
have struggled with the sons beliefs, trying to convince him
to allow his mother to be medicated for pain. The nurses are o]
upset at the sons request not to tell his mother her diagno- Culture Dened
sis. In addition, they are concerned that Mrs. Wu appears
very depressed, never making eye contact with them and Culture is the learned, shared and transmitted values, beliefs,
rarely talking. norms and life ways of a particular group that guide their
On the second evening of the hospital stay, the nurse thinking, decision, actions in patterned waysa patterned
caring for Mrs. Wu asks the covering physician to behavioral response.5 Culture is shaped over time and is con-
consider ordering an antidepressant. While assessing stantly changing.6 It is a dynamic system in which the beliefs,
Mrs. Wu, the physician tells her that she is dying from values, and lifestyle patterns pass from one generation to
lung cancer. The family returns in the morning to find another.7 While culture is often thought of as race and ethnic-
their mother quite distraught, and they are so angry that ity, the denition of culture expands far beyond, encompass-
Mrs. Wu has been told her diagnosis that the eldest son ing such dimensions as gender, age, differing abilities, sexual
threatens to sign his mother out of the hospital against orientation, religion, nancial status, residency, employment,
medical advice. The patient, family, and staff are and educational level.2 Each dimension plays a role in shaping
experiencing a great deal of distress as a result of the cul- patient and family responses to life-threatening illness.
tural conflict that has taken place. A broad denition of culture recognizes various subcul-
o] tures an individual may associate with that shape experiences
Cultural Considerations in Palliative Care 625
and responses in any given situation. The nurse must also be and determine which family member or members hold that
constantly aware that the culture of the health care system dominant role. In some families, decision-making may be the
and the culture of the nursing profession shape how he or she responsibility of the male head of the family or eldest son; in
responds to interactions with patients, families, and colleagues. others, it may be the eldest female. Discussing prognosis and
treatment with an inappropriate member may create signi-
cant clashes with the health care team.17
o]
Components of Culture Age
Race Age has its own identity and culture.1 Age cohorts are character-
ized by consumer behaviors, leisure activities, religious activi-
The commonly held misconception that race refers to biolog- ties, education, and labor force participation.18 Each group has
ical and genetic differences and ethnicity refers to cultural its own beliefs, attitudes and practices, which are inuenced by
variation is outmoded.8 Race does not exist as a natural cate- their developmental stage and by the society in which they
gory, but as a social construct.7,8 Any discussion of race must live. The impact of a life-limiting illness on persons of differ-
include the harsh reality of racism issues and disparities that ing age groups is often inuenced by the loss of developmen-
have plagued society and continue to exist even today. Recent tal tasks associated with that age group. Consider also the
studies have demonstrated the discrimination of persons of cultural impact of age on decision-making, caregiving issues,
certain races regarding health care practices and treatment and barriers to effective pain management.10
options.912 When viewed in relation to specic races, morbidity
and mortality statistics point to serious gaps in access to quality Differing Abilities
care. Racial disparities are still evident even after adjustments
for socioeconomic status and other access-related factors are Individuals with physical disabilities or mental illness are at
taken into account.13 risk of receiving poorer quality health care. Those with differ-
There is often an underlying mistrust of the health care sys- ing abilities constitute a cultural group in themselves and
tem. Memories of the Tuskegee syphilis study and segregated often feel stigmatized. This discrimination is evident in cul-
hospitals remain with older African Americans.3 The combi- tures where the healthy are more valued than the physically,
nation of mistrust, along with numerous other complex vari- emotionally, or intellectually challenged. If patients are unable
ables, inuence issues such as medical decision-making and to communicate their needs, pain and symptom management
advance care planning.3,14 Compounding the situation is the and end-of-life wishes are not likely to be addressed. Taking
fact that health care providers often do not recognize existing time to determine an individuals goals of care, regardless of
biases within systems or themselves. differing abilities, and identifying resources and support to
improve quality of life is essential.
Ethnicity
Sexual Orientation
Ethnicity refers to individuals with a common ancestry who
share a similar sense of historical continuity.7 The values, prac- Sexual orientation may carry a stigma when the patient is gay,
tices, and beliefs shared by members of the same ethnic group lesbian, or transgendered. In palliative care, these patients have
may inuence behavior or response.6 It is important to note, unique needs, due to the legal and ethical issues of domestic
however, that although an individual may belong to a particu- partnerships, multiple losses that may have been experienced
lar ethnic group, he or she may not identify strongly with that as a result of ones sexual orientation, and unresolved family
group.15 Consider intergenerational differences and levels of issues. Domestic partnerships, sanctioned by many cities and
acculturation. It is not unusual for members of the same fam- states in the United States, grant some of the rights of tradi-
ily to have very different perspectives on certain issues. Assess tional married couples to unmarried homosexual couples
each individuals beliefs and practices rather than assuming who share the traditional bond of the family.19 However, many
that he or she holds the beliefs of a particular group.16 The ten- cities and states do not legally recognize the relationship. If
dency to assume that an individual will respond in a certain legal documents have not been drafted prior to death of a
way contributes to stereotyping and can lead to inappropriate partner, survivorship issues, nancial concerns, and lack of ac-
interventions. knowledgment of bereavement needs may complicate grief.2
Gender Religion and Spirituality
Cultural norms dictate specic roles for men and women. The Religion is the belief and practice of a faith tradition, a means
signicance of gender is evident in areas such as decision- of expressing spirituality. Spirituality, a much broader concept,
making, caregiving, and pain and symptom management. It is is the life force that transcends our physical being and gives
important to have an awareness of family dominance patterns, meaning and purpose.1,20 These terms are often mistakenly
used interchangeably. It should be noted that an individual may literacy level of both patient and primary family caregiver(s).
be very spiritual, but not practice a formal religion. In addition, Additionally, nd out if there are norms related to greetings
those who identify themselves as belonging to a religion do not (e.g., formal/informal; appropriateness of touch, handshake,
necessarily adhere to all the practices of that religion. As with smile). Attention to acceptable forms of nonverbal communi-
ethnicity, it is important to determine how strongly the indication is as important as knowledge of verbal communication
vidual aligns with his or her identied faith and the signi- customs; for example, certain gestures, eye contact and silence
cance of its practice rituals. that may be acceptable in some cultures yet unacceptable in
Chaplains, clergy from a patient or family members reli- others.22,23
gious group, and ideally their own community clergy are key If there is a language barrier, a professionally trained inter-
members of the interdisciplinary team. Often, individuals have preter of the appropriate gender should be contacted. Family
misconceptions of the tenets of their own faith, and clergy can members should not be asked to serve as interpreters because
help ease spiritual distress. this may force them into an uncomfortable role should sensitive
issues arise. When using an interpreter, direct all verbal commu-
Socioeconomic Status nication to the patient/family, not to the interpreter. Ongoing
clarication that information is understood is critical.
Ones socioeconomic status, place of residence, workplace, Touch can be a powerful communication tool in palliative
and level of education are important components of ones care; however, although intended to communicate reassurance
cultural identity and play a role in palliative care. For exam- and caring, touch may invade personal space and privacy,
ple, those who are socioeconomically disadvantaged face resulting in considerable distress. Norms regarding appropri-
unique challenges when seeking health care and when receiv- ateness of touching members of the opposite sex are important
ing treatment. Patients and families in a supportive commu- to note.6 How close you should be to another, or the concept of
nity have increased access to resources at end of life than other personal space is closely related to communication styles. Sitting
more vulnerable populations, such as those in prison and the too close to a patient may be considered intrusive or disrespect-
homeless.21 ful.22 On the other hand, sitting or standing far away from the
However, regardless of nancial status, an estimated 25% of patient may communicate disinterest and lack of caring.15 Ask-
families are nancially devastated by a serious terminal ill- ing the individual for guidance on these issues will avoid a great
ness.2 Patients experiencing disease progression, or in whom deal of unintended discomfort and avoid misunderstandings.
treatment side effects preclude the ability to work, are forced
to confront profound losses: loss of work and income, loss of Meaning of Food and Nutrition
identity, and loss of a network of colleagues. Those who are
educationally disadvantaged struggle to navigate the health Across cultures, there is agreement that food is essential for
care system and to access information and support. life, to maintain body function and to produce energy.6 Food
In addition to assessing the components of culture previ- serves another purpose in the building and maintaining of
ously mentioned, when doing a thorough cultural assessment, human relationships. It is used in rituals, celebrations, and
it is important to determine communication styles, the mean- rites of passage to establish and maintain social and cultural
ing of food and food preferences and prohibitions, and death relationships with families, friends, and others. Because of
and dying rituals. foods importance for life and life events, a loss of desire for
food and subsequent weight loss and wasting can cause suffer-
Cultural Considerations Related to Communication ing for both the patient and family. Culturally appropriate or
favorite foods may be encouraged. However, families often
Awareness of verbal and nonverbal communication styles need explanations when a patient is no longer able to enjoy
assists the nurse in establishing trusting relationships, showing favorite foods or family mealtime rituals. It is imperative that
respect for variations, and identifying potential communica- the health care team understands the meaning attached to
tion barriers early to avoid potential conicts. Communica- food in a palliative care setting, when decisions regarding the
tion is an interactive, multidimensional process, often dictated potential burden of providing articial nutrition and hydra-
by cultural norms, and provides the mechanism for human tion for an imminently dying patient are being discussed.
interaction and connection.
In any patient, family, or professional encounter, under- Death Rituals and Mourning Practices
standing communication styles and norms will help enhance
that encounter. Factors to consider include clarifying who the The loss of a loved one brings sadness and upheaval in the
decision-maker in the family is and with whom information family structure across all cultures.24 Each culture responds to
should be shared (patient, family, or both). This is a key factor to these losses through specic rituals that assist the dying and
address early on, as it establishes trust in the patientprovider the bereaved through the nal transition from life. Respecting
and familyprovider relationships. It is also important to these rituals and customs will have tremendous impact on the
determine the dominant language and dialect spoken and the healing process for family members following the death.
The tasks of grieving are universal: to accept the reality of nurses community, and to integrate a basic understanding of
the loss, to experience pain of grief, to begin the adjustment to norms and practices impacting issues likely to arise in pallia-
new social and family roles, and to withdraw emotional energy tive and end-of-life situations. Involve community members,
from the dead individual and turn it over to those who are organizations, faith communities, and leaders in a shared
alive.25 The expressions of grief, however, may vary signi- understanding of needs and concerns. Knowledge gained of a
cantly among cultures. What is acceptable in one culture may particular group should serve only as a guide to understanding
seem unacceptable, or even maladaptive, in another. Recogniz- the unique cultural needs of the patient and family that comes
ing normal grief behavior (versus complicated grief ) within a through individualized assessments. Other resources, such as
cultural context therefore demands knowledge about cultur- cultural guides, literature and web-based resources are avail-
ally acceptable expressions of grief. Important to note is that able to assist the nurse in acquiring knowledge about specic
rituals may begin before death and may last for months or groups. Table 342 lists several useful web-based resources.
even years after death. Some may value being present at the Cultural skill is the third component of cultural compe-
time of death. Insure that any required spiritual, religious, or tency. Skills in cultural assessment, cross-cultural communica-
cultural practices are performed and that appropriate care of tion, cultural interpretation, and appropriate intervention can
the body after death is carried out. be learned. Multiple tools are available to assess cultural behav-
ior and beliefs. Key assessment questions, applicable in the pal-
liative care setting, will help the nurse address the patients and
o] familys needs in a culturally sensitive manner.23
Cultural Competence
Cultural competence refers to a dynamic, fluid, continuous o]

process of awareness, knowledge, skill, interaction, and sen- Cultural Assessment
sitivity.5 Cultural competence is an ongoing process, not an
end point. It is more comprehensive than cultural sensitivity, Cultural assessments involve questions that necessitate the
implying not only the ability to recognize and respect cul- development of a trusting relationship. When meeting the
tural differences, but also to intervene appropriately and patient and family early in the disease trajectory, the palliative
effectively.6,26,27 Five components essential in pursuing cul- care clinician is able to establish trust. Often, though, the pal-
tural competence are cultural awareness, cultural knowledge, liative care nurse may not have the luxury of time. Ideally, the
cultural skill, cultural encounter, and cultural desire.28 patients primary care team would have completed the assess-
Integrating cultural considerations into palliative care ment and communicated information gleaned from the assess-
requires rst and foremost that the nurse becomes aware of how ment across settings.
ones own values, practices, and beliefs inuence care.26,28,29 Cul- When the timing of the assessment cannot be planned,
tural awareness begins with an examination of ones own her- inquiries of the patient or family can be helpful in assisting the
itage, familys practices, experiences, and religious or spiritual nurse to gain the most helpful information for the situation at
beliefs.29,30 Each nurse brings his or her own cultural and philo- hand. Checklists do not necessarily build trust. Instead, asking
sophical views, education, religion, spirituality, and life experi- the patient, or the family member to tell you about him or her-
ences to the care of the patient and family. Cultural awareness self or the family, and then listening to those narratives can
challenges the nurse to look beyond his or her ethnocentric view reveal many of their beliefs, values, and concerns. The speaker
of the world, asking the question How are my values, beliefs, may give you clues that trigger important questions to ask so
and practices different from the patient and family? rather than that you are able to clarify patient and family needs and goals.
How is this patient and family different from me?31 Exploring Examples of trigger questions are provided in Table 343.
ones own beliefs will raise an awareness of differences that have
the potential to foster prejudice and discrimination and limit
the effectiveness of care.29 Often this exploration identies more o]
similarities than differences (Figure 341). The universal aspects Selected Palliative Care Issues Inuenced by Culture
of life, family, trust, love, hope, understanding, and caring unite
us all.32 Cultural considerations impact all aspects of palliative care:
Acquiring knowledge about different cultural groups is the assessment, planning, and implementation of care. This sec-
second component to gaining cultural competence, but knowl- tion focuses on cultural considerations regarding decision-
edge alone is insufcient in providing culturally appropriate making, pain, and symptom management.
care. Yet, how does one attempt to gain knowledge and under-
standing of so many diverse cultures? No one can expect to Medical Decision-Making
have in-depth knowledge of all cultural variations of health
and illness beliefs, values, and norms. A suggested strategy is to Over the past 35 years in the United States, ethical and legal
identify the most common ethnic group/cultures living in the considerations of decision-making have focused on patient
Figure 341. Cultural knowledge and beliefs: a self-assessment questionnaire. (Source: JoAnne
Banks-Wallace, PhD, RN, The University of Missouri, Sinclair School of Nursing, Columbia,
MO. ONS Multicultural Tool Kit.)
Table 342
Web Resources for Acquiring Knowledge About Cultural Issues
Affecting Health Care
This list offers suggestions of several useful resources. The list is not intended to be exhaustive,
but serves as a starting point for gaining more information.
ACCESSwww.access2eolcare.org
ACCESS to End-of-Life Care: A Community Initiative is dedicated to improving end-of-life care
services to culturally and ethnically diverse populations. The website offers in-depth
information and an exceptional bibliography. Great links to other resources.
Cross Cultural Health Care Program (CCHPC)http://www.xculture.org/

CCHCP addresses broad cultural issues that impact the health of individuals and families in
ethnic minority communities.
Diversity Rxhttp://DiversityRx.org
Models and practices, policy, legal issues, networking and links to other resources
EthnoMedhttp://ethnomed.org/
The EthnoMed site contains information about cultural beliefs, medical issues and other related
issues pertinent to the health care of recent immigrants to the US.
University of Michigan Cultural Competency Programwww.med.umich.edu/

multicultural/ccp
Excellent source of information, tools, and resources.
Transcultural Nursing Societywww.tcns.org

The society, founded in 1974, serves as a forum to promote, advance, and disseminate
transcultural nursing knowledge worldwide.
Audio Resource
Heart to Heart: Improving Care for the Dying through Public PolicyPart IV: Cultural Diversity
and Discrimination. Perspectives on how death and dying are inuenced by cultural and
religious values. Ordering info: $12 per tape. By phone: 1-800-989-9455; E-mail:
pfc@partnershipforcaring.org.
Video Resource
One JourneyMany Voices: Conversations About Serious Illness and Dying. Available at
http://www.aarp.org/lce/video.
Other
Last Acts Diversity and End-of-Life Care Literature Review. Annotated bibliography. Washington,
DC : Last Acts National Program Ofce, 2001; 13 p. MH04D6133. Free copies are available from
Last Acts National Program Ofce, 1620 Eye Street, NW, Suite 202, Washington, DC 20006-4017;
(phone) 202-296-8071; (fax) 202-296-8352.
autonomy.33 This focus replaced the more paternalistic Inherent in the movement for patient autonomy is the under-
approach of decision-making as solely the physicians respon- lying assumption that all patients want control over their
sibility, with an approach that emphasizes a model of shared health care decisions. Yet, in fact, for some individuals, patient
responsibility with the patients active involvement. The autonomy may violate the very principles of dignity and
Patient Self-Determination Act of 1991 sought to further integrity it proposes to uphold.
clarify and to protect an individuals health care preferences This European-American model of patient autonomy has its
with advance directives.34,35 The principle of respect for patient origin in the dominant culture, a predominantly white middle-
autonomy points to a patients right to participate in decisions class perspective that does not take into consideration diverse
about the care he or she receives. Associated with this is the cultural perspectives.36 Emphasis on autonomy as the guiding
right to be informed of diagnosis, prognosis, and the risks and principle assumes that the individual, rather than the family
benets of treatment in order to make informed decisions.17 or other social group, is the appropriate decision-maker.37
Table 343
Key Cultural Assessment Questions
Formal cultural assessments are available for the nurse to use (see resources in Table 342).
Remember that a checklist does not always instill trust. Below are some suggestions for ascertaining
key cultural preferences from both patients and family caregivers.
Tell me a little bit about yourself (for families, e.g., your mother, father, sister, brother, etc.)
Where were you born and raised? (If an immigrant: How long have you lived in this country?)
What language would you prefer to speak?
Is it easier to write things down, or do you have difculty with reading or writing?
Whom do you go to for support (family, friends, community, religious or community leaders)?
Is there anyone we should contact to come to be with you?
I want to be sure Im giving you all the information you need. What do you want to know
about your condition? Whom should I speak to about your care?
Whom do you want to know about your condition?
How are decisions about health care made in your family? Should I speak directly with you, or
is there someone else I should be discussing decisions with?
(Address to patient or designated decision maker.) Tell me about your understanding of what
has been happening up to this point? What does the illness mean to you?
We want to work with you to be sure you are getting the best care possible, and that we are
meeting all your needs. Is there anything we should know about any customs or practices that
are important to include in your care?
Many people have shared that it is very important to include spirituality or religion in their
care. Is this something that is important for you? Our chaplain can help contact anyone that
you would like to be involved with your care.
We want to make sure we respect how you prefer to be addressed, including how we should
act. Is there anything we should avoid? Is it appropriate for you to have male and female
caregivers?
Are there any foods you would like or that you should avoid?
Do you have any concerns about how to pay for care, medications or other services?
Death Rituals and Practices
Is there anything we should know about care of the body, about rituals, practices, or
ceremonies that should be performed?
What is your belief about what happens after death?
Is there a way for us to plan for anything you might need both at the time of death and
afterward?
Is there anything we should know about whether or not a man or a woman should be caring
for the body after death?
Should the family be involved in the care?
However, in many non-European American cultures, the con- telling the patient violates the patients and familys cultural
cept of interdependence among family and community mem- norms, the health care provider may, in fact, not be respecting
bers is more valued than individual autonomy.33,37 Cultures the patients right to autonomously decide not to receive the
that practice family-centered decision-making, such as Asian information. Some cultures believe that telling the patient he
and Hispanic cultures, may prefer that the family, or perhaps a has a terminal illness strips away any and all hope and causes
particular family member rather than the patient, receive and needless suffering, and may indeed hasten death.3,12,38,39
process information.17 Patient autonomy may not be seen as The nurse must consider the harm that may occur when
empowering, but, rather, may seem burdensome for patients the health system or providers violate cultural beliefs and
who are too sick to have to make difcult decisions.31 The label practices.17 Assessing and clarifying the patient and familys
of truth-telling itself is misleading. While full disclosure may perspectives, values, and practices may prevent a cultural con-
not be appropriate, it is never appropriate to lie to the patient. ict.33 The nurse is in a key position to advocate these critical
If the patient does not wish to receive information and/or patient and family issues (see Table 343 for examples of
questions to ask). By asking how decision are made, and whether ache being the least severe.44 Focus on the words the patient
or not the patient wishes to be involved in both being told uses to describe pain. To help facilitate an understanding of
information or participating in the decision-making process, the severity of the pain experienced by someone who does not
patient autonomy is respected, and individual beliefs and val- speak English, use pain rating scales that have been translated
ues are honored.14 into numerous languages.44 While it is important to base the
assessment on the patients self-report of pain intensity, it may
Withholding and Withdrawing be necessary to rely on nonverbal pain indicators such as facial
expression, body movement, and vocalization to assess pain in
Another issue with the potential for cultural conict is the nonverbal, cognitively impaired patient, the older adult, or
decision-making regarding withholding and withdrawing of the infant, who are all at risk for inaccurate assessment and
life-sustaining treatments. Deciding to withhold or withdraw undertreatment of pain.4547
life-sustaining treatment is difcult because inherent in the Both cultural bias in pain reports and gender biases have
decision is that the patient will most likely die.34 Attitude surveys been identied and documented.13 Studies of gender varia-
looking at initiating and terminating life support have demon- tions in pain response have identied differences in sensitivity
strated differences among several ethnic groups. When making and tolerance to pain, and willingness to report pain.48-51 Stud-
difcult decisions, family members often feel that by agreeing to ies reveal that Hispanics, African Americans, and females are
withdrawal of life support, they are, in fact, responsible for the less likely to be prescribed opioids for pain.47,51
death of their loved one. Recognize also that the words used in Incorporating culturally appropriate nondrug therapies may
these decisions, including do not resuscitate, all have negative improve the ability to alleviate pain. Healing practices specic
connotations and involve the removing of something or the to cultures should be offered to the patient and family.51
withholding of a particular intervention. Research suggests that Herbal remedies, acupuncture, and folk medicines should be
groups including African Americans, Chinese Americans, Fil- incorporated into the plan of care if desired. Keep in mind that
ipino Americans, Iranian Americans, Korean Americans, and certain nondrug approaches, such as hypnosis and massage,
Mexican Americans were more likely to start and to continue may be inappropriate in some cultures.44
life support when such measures were felt by the health
care team to be futile than were European Americans.40 Because Symptom Management
many ethical conicts arise from differences in patients, fami-
lies, and providers values, beliefs, and practices, it is critical that Similar to pain management, symptoms have cultural mean-
individual members of the health care team be aware of their ings associated with them that reect cultural values, beliefs,
own cultural beliefs, understand their own reactions to the and practices. Assessment and management of such com-
issue, and be knowledgeable about the patients and families monly occurring symptoms in palliative care as fatigue, dysp-
beliefs to address the conict.33 nea, depression, nausea and vomiting, and anorexia/cachexia
should be implemented within a cultural framework.
The Experience of Pain As noted earlier, it is important to understand the health
and illness beliefs of the cultural groups living in your com-
Pain is a highly personal and subjective experience. Pain is munity. Table 344 lists cultural considerations for pain and
whatever the person says it is, and exists whenever the person symptom management for selected groups. Of note, there is a
says it does.41 Culture plays a role in the experience of pain, the dearth of information in the literature regarding health and
meaning of pain, and the response to pain. A biocultural illness beliefs in the Caucasian, or what is often referred to as
model of pain suggests that social learning from family and the European-American population. This group, as with other
group membership can inuence the psychological and phys- ethnic groups, migrated from numerous countries of origin.
iological processing of pain, which then affects the perception The reader is reminded that the groups listed in Table 344
and modulation of pain.42 also immigrated from various geographic areas. Therefore, the
Strong beliefs about expressing pain and expected pain list serves as a guide only and does not replace individual
behaviors exist in every culture.43 Pain tolerance varies from assessment. The nurse recognizes guides as offering informa-
person to person and is inuenced by factors such as past tion based on generalizations, and that making assumptions
experiences with pain, coping skills, motivation to endure without validating their signicance to the individual and
pain, and energy level. Western society appears to value indi- family may lead to harmful stereotyping.27,32
viduals that exhibit a high pain threshold.44 As a result, those
with a lower threshold, who report pain often, may be labeled
as difcult patients. o]
Pain assessment should be culturally appropriate, using Summary
terms that describe pain intensity across most cultural groups.
Pain, hurt, and ache are words commonly used across Given the changing population of the United States, we as nurses
cultures. These words may reect the severity of the pain, with must advocate for the integration of cultural considerations in
pain being the most severe, hurt being moderate pain, and providing comprehensive palliative care. It is imperative that
Table 344
Cultural Considerations for Pain and Symptom Management
American Indian/
Alaskan Native Asian/Pacic Islander Black Hispanic
Pain Rarely demonstrate May not complain of pain Open expression of Ability to endure
pain behaviors or May use nondrug therapies, pain; avoids medica- pain and suffering
request medication; e.g., acupuncture to tions due to fears of stoically is valued;
view pain as some- relieve pain addiction; believes males who express
thing that has to be pain must be endured pain considered
endured; often weak; type
under-treated and amount of
pain divinely pre-
determined
Dyspnea May report the airs Caused by too much May report Feels something is very
heavy yinmay treat with difculty catching wrong if oxygen is
hot soups/warm breath needed
clothing
Nausea and Maybe embar- Caused by too much Prefers non-drug Willing to disclose
vomiting rassed to report yinwill treat with management symptom
hot soups/broths
Constipation/ Patient may be mo- Caused by too much May report being Will disclose if asked;
diarrhea dest, but will report; yang; may treat blocked up believe diarrhea is
may use elderberry with yin foods benecial; may not
owers as remedy for want drug therapy
diarrhea
Fatigue Tries to maintain Caused by too much Willing to disclose
a high level of yinginseng may symptom
activity despite poor be used for relief
health or impairment
Depression Often psychiatric prob Family important in Seldom report depression Not easily disclosed;
lems present as the care of mentally call it a tired state; will considered a sign of
physical symptoms; ill; tremendous stigma accept drug therapy weakness; family
vague generally attached todiagnosis; embarrassed
recognized as hav- readily not
ing a heart problem discussed
Source: Moller DW. Dancing with Broken Bones: Portraits of Death and Dying Among Inner-City Poor, 2004 by Oxford University Press, Inc. Used by permission of
Oxford University Press, Inc.
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35o] Susan Derby and Sean OMahony
Elderly Patients
Being elderly and sick is very frightening . . . your children have moved far away and many of your
friends have died. Making decisions without support is scary and lonely.An elderly woman,
dying of cancer
Key Points Aging is a normal process of life, not a disease, and inrmity
The majority of people who suffer from chronic disease are elderly. and frailty do not always have to accompany being old. It is
The trajectory of illness for the elderly is usually one of progressive expected that most of us will live well into our 70s or 80s, and
loss of independence, with the development of multiple comorbid the aging of the population is projected to continue well into
problems and symptoms. the 21st century. Projected growth for the elderly population is
The last years of a frail elderly persons life are often spent at home staggering. During the next 20 years, the fastest-growing seg-
in the care of family, with approximately 50% to 60% of the elderly ment of the population will be in the group aged 85 years and
dying in a hospital or long-term care facility. older. During the past decades, this increase in life expectancy
Evidence suggests that the end of life for many elderly is has been mainly due to improvements in sanitation and
characterized by poor symptom control, inadequate advanced care infectious-disease control through vaccinations and antibio-
planning, and increased burden on caregivers. tics. Presently, the older population is growing older because
Clinicians caring for the elderly often lack skills in providing of positive trends in the treatment of chronic diseases
palliative and end-of-life care. cardiovascular and neurological, as well as cancer. This
swelling of the older segment of the population reinforces
the need for nurses, physicians, and all health care profession-
als to understand the special palliative care needs of the elderly.
In our society, the majority of people who have chronic disease
are elderly. One of the major differences from younger groups
in treating illness in the elderly population is the need for
extensive family support and care during the last weeks and
months of life.
o]
Comorbidity and Disability
The elderly have many comorbid medical conditions that con-

tribute an added symptom burden to this palliative care pop-
ulation. The presence of existing comorbidities and disabilities
renders them more susceptible to the complications of new ill-
nesses and their treatments. The presence of chronic medical
conditions is associated with disability and increased health
care use, including institutionalization and hospitalization in
the elderly (Table 351). Forty percent of community-dwelling
adults older than 65 report impairment in their daily activities
secondary to chronic medical conditions.1 Sixteen percent of
adults older than 65 report impairment in walking, increasing
635
Table 351
Age-Specic Prevalence of Chronic Medical Conditions in Noninstitutionalized U.S. Adults
(per 1000)
1844 Years 4564 Years 6574 Years >75 Years
Arthritis 52.1 268.5 459.3 494.7

Hypertension 64.1 258.9 426.8 394.6
Heart disease 40.1 129.0 276.8 349.1
Hearing impairment 49.8 159.0 261.9 346.9
Deformity/orthopedic impairment 125.3 160.6 167.9 175.5
Chronic sinusitis 164.4 184.8 151.2 160.0
Visual impairment 32.8 43.7 76.4 128.8
Diabetes 9.1 51.9 108.9 95.5
Cerebrovascular disease 1.9 17.9 54.0 72.6
Emphysema 1.6 15.2 50.0 38.9
Source: Seeman et al. (1989), reference 153.
to more than 32% in those older than 85. Comorbidity is for death at home, the availability of home visits by physicians
highly prevalent in people over 65 years. In the United States, correlates with a higher rate of death at home. In patients
49% of noninstitutionalized people over 60 have two or more expressing an initial wish to die at home, caregiver burnout
chronic conditions. Much higher percentages are seen in adults and unrelieved symptoms are predictive of death in hospitals
older than 65 who are living in a nursing home or who are and hospice.1215 The available data suggest that with limited
hospitalized.111 increase in the allocation of nursing support, dying patients
wishes to die at home can be met. Elderly women are more
than twice as likely to be living alone than are elderly men.
o] More than half of women 75 and older live alone.1215 Those
Sites of Residence and Place of Death living alone rely more heavily on the presence of social sup-
ports and assistance for the provision of health care.1215
Sixty-six percent of older noninstitutionalized persons live in
a family setting; this decreases with increasing age. Three out
of every ve women older than 85 live outside of a family o]
arrangement. Rates of institutionalization are estimated to be Palliative Care in Nursing Homes
4% to 5% in the United States; this increases to 23% in the
over-85 population. The wide range of care settings for the el- End-of-life care in long-term care settings is described in
derly is reected in the sites of death of the elderly.8,1215 greater detail in Chapter 40. It is estimated that of those who
Over the past 100 years, the site of death has shifted from turned 65 years old in 1990, 43% will enter a nursing home
the home to institutions. Data from the National Institute on before they die.16 Because the fastest-growing segment of the
Agings Survey of the Last Days of Life (SLDOL) indicate that population is those over 85 years, it is likely that these individ-
45% of the elderly who died spent the night prior to death in a uals will require long-term care in these settings. Pain man-
hospital and 24% in a nursing home, and 30% died at home.15a agement and end-of-life care in nursing homes represent
There was a signicant drop in the proportion of patients in management of the frailest individuals, often with minimal
the older age group for both men and women who died in physician involvement. As many as 45% to 80% of nursing home
hospitals and an increase in proportions dying at home or residents have pain that contributes signicantly to impaired
nursing homes. Almost one third of older women died in quality of life.17 Most mild pain in nursing homes is related to
nursing homes. Interestingly, the National Mortality Follow- degenerative arthritis, low-back disorders, and diabetic and
Back Survey reported that only 8.7% of decedents were receiv- postherpetic neuropathy. Cancer pain accounts for the major-
ing home hospice, and less than 0.5% were receiving inpatient ity of severe pain.18
hospice care.89 Barriers to palliative care in the nursing home include
In several studies, cancer and dementia are predictive of institutional, patient, and staff-related barriers (Table 352).
death at home rather than in institutions. Death in hospice Data from nursing homes suggest that as many as 30% to
appears to correlate with the local availability of hospice beds, 80% of nursing home residents receive inadequate pain
as well as a diagnosis of cancer. For patients with a preference management.1925
Elderly Patients 637
dents, pain management is sporadic and often inconsistent

Table 352 with American Medical Directors Association Guidelines.26
Barriers to Palliative Care in Nursing Homes
Many other obstacles to palliative care have been identied,
Institution-Related including lack of communication among decision-makers,
Low priority given to palliative care management by lack of agreement on a course for end-of-life care, failure to
administration implement a timely end-of-life care plan, and failure to recog-
Limited physician involvement in care, weekly or monthly nize treatment futility.27 Only about half of nursing home res-
assessments idents have do-not-resuscitate (DNR) orders, fewer than one
in ve have advance directives, and fewer (14%) have living
Limited pharmacy involvement, no on-site pharmacy
wills and do-not-hospitalize directives (4%).2830 One of the
Limited R.N. involvement in care; inadequate nursepatient
most troublesome concerns expressed by staff who care for
staff ratios
nursing home residents is the difculty in assessing pain in the
Primary care being administered by nonprofessional nursing cognitively impaired elderly resident.
staff
Approximately 90% of the 4 million Americans with
Limited radiological and diagnostic services, which impair dementia will be institutionalized before death.31 One of the
determination of a pain diagnosis barriers to end-of-life care in this population is that advanced
Patient-Related dementia is often not viewed as a terminal condition. Because
of this, palliative care often is not initiated until the nal stages
Physiological changes of aging, which affect distribution,
metabolism, and elimination of medications of life. In one retrospective study using the data from the Min-
imum Data Set,3233 1784 residents with advanced dementia
Multiple chronic diseases
and 918 residents with terminal cancer were compared. Resi-
Polypharmacy dents with advanced dementia were older, lived longer, and
Impaired cognitive status and Alzheimers-type dementia had higher activity of living scores than the terminal cancer
Underreporting of pain due to fear of addiction, lack of residents. Six months after admission to the nursing home,
knowledge, fear of being transferred only 20% of the residents with advanced dementia were per-
Sensory losses that impede assessment ceived as having a life expectancy of less than 6 months. At the
Increased incidence of depression, which may mask reporting last assessment before death, only 4.1% were recognized as
and assessment of pain having a prognosis under 6 months; 55% had a DNR order,
compared with 86.1% of the cancer patients.34 With respect to
Staff-Related nonpalliative interventions, residents dying with advanced
Lack of knowledge of symptom management at the end of life dementia experienced more frequent uncomfortable or aggres-
Lack of knowledge in the assessment and management of sive interventions at the end of life; 25% died with a feeding
chronic cancer pain tube, 11% with restraints, and 10.1% with intravenous (IV)
Lack of knowledge in use of opioid drugs, titration, and side- therapy. These ndings suggest that palliative care for nursing
effect management home residents with advanced dementia is suboptimal, and
Fear of using opioids in elderly residents encourages use of educational strategies to promote palliative
care to these patients.
Misconceptions about use of opioids in elderly patients (e.g.,
fear of addiction, elderly feel less pain)
Lack of knowledge in use of nonpharmacological techniques
o]
Lack of experience with other routes of administration Economic Considerations in Caring for the Elderly
including patient-controlled analgesia, transdermal, rectal,
subcutaneous, and intravenous routes
The higher rates of disability and comorbidity in the elderly,
Source: Adapted from Stein (1996), reference 154. requiring the provision of long-term residential care as well as
home care, result in considerable costs to the health care.
Health Care Financing Administration data indicate that
6% to 8% of Medicare enrollees die annually and account for
27% to 30% of annual Medicare expenses.35 However, spend-
In one study comparing analgesic management of dying ing on aggressive interventions is not a major component of
patients in a nursing home enrolled and not enrolled in the hospital costs incurred in the dying elderly. Only 3% of
Medicare Hospice program, 15% percent of hospice residents Medicare beneciaries who die sustain high costs associated
and 23% of nonhospice residents in daily pain received no with aggressive interventions such as surgery, chemotherapy,
analgesics; 51% of hospice residents and 33% of nonhospice or dialysis.
residents received regular treatment for pain. These ndings While hospital costs in the last days of life are lower for the
suggest that for nursing home residents in pain, analgesic oldest old, the percentage of Medicare and Medicaid expendi-
management is better for hospice patients, but for many resi- ture for nursing home care rises from 24% for the young-old
(65 to 74 years), to 62% for the oldest old (over 85 years).3638 o]

Most required residential care occurs in the last days of life. Family/Caregiver Issues
Who Are the Caregivers for the Elderly?

o]
Determination of Prognosis and the The term caregiver refers to anyone who provides assistance to
Provision of Palliative Care someone else who needs it. Informal caregiver is a term used
to refer to unpaid individuals, such as family members and
Providing palliative care to elderly patients is limited by the friends, who provide care. These persons can be primary or
uncertain prognoses of many chronic illnesses in this population secondary caregivers, full or part time, and can live with the
(congestive heart failure, chronic obstructive pulmonary disease person being cared for or live separately. Formal caregivers
[COPD], cerebrovascular disease, dementia). Because of the dif- are volunteers or paid care providers associated with a service
culty to accurately prognosticate and many other factors, most system. Estimates vary on the numbers of caregivers in the
patients who have fatal illnesses do not use the Medicare hospice United States.
benet until shortly before death.38 Even the most complex According to the most recent National Long Term Care
prognostic scoring systems, such as the APACHE (Acute Physiol- Study (NLTCS), more than 7 million people are informal care-
ogy Age Chronic Health Evaluation), provide little information givers, dened here as spouses, adult children, other relatives,
for the likelihood of an individual patients death.39 and friends who provide unpaid help to older people with at
The uncertain prognoses of chronic nonmalignant medical least one limitation in their activities of daily living. An esti-
conditions can affect clinical decision-making. It may also lead mated 15% of American adults are providing care for seriously
to overuse of health care resources in acute care settings, even ill or disabled adults.50 Of these, an estimated 12.8 million
when death is imminent. An analysis of Medicare claim data Americans need assistance to carry out activities such as eat-
for 6451 elderly hospice patients demonstrated that median ing, dressing, and bathing. About 57% are aged 65 or older
survival after enrollment was only 36 days, with 15.6% dying (7.3 million). Spouses accounted for about 62% of primary
within 7 days.4042 caregivers. Approximately 72% of caregivers are female.51 The
majority of caregivers provide unpaid assistance for 1 to 4 years,
Advance Directives and Decision-Making 20% provide care for 5 years or longer.51
According to the 2000 National Hospice Care Survey (NHCS),
Advance directives are especially important in elderly patients 42% of patients enrolled in hospice programs were women
who are at high risk of morbidity and mortality. The presence, and 33% were men. The majority (81%) were 65 years or older,
stability, and willingness to discuss advance care planning and a signicantly larger proportion of women than men were
appears to be dependent upon several factors, including com- 85 years of age or older. Men were more likely to have a spouse
munication issues, value differences, cultural issues, ethnicity, as their primary caregiver, while women were more likely to be
and mental capacity.43,44 In one study of advance care planning cared for by a child or child-in-law. The most common diag-
among nursing home residents, two variables were associated nosis for most of the hospice care patients included neoplasm,
with the reduced likelihood of having DNR and do-not- heart disease, and COPD.52
hospitalize orders or restricting feeding, medication or other
treatment: African-American ethnicity and less time in the Involving Family in Caregiving for the Elderly:
facility.44 What Is the Burden?
Many references in the literature support the notion that a
patients prior decision regarding treatment choices accurately The burden of caregiving has been well documented in the lit-
reects future choices,4548 however, not all studies support that. erature and includes a greater number of depressive symp-
One prospective longitudinal study of 65 nursing home residents toms, anxiety, diminished physical health, nancial problems,
assessed stability of residents preferences for life-sustaining and disruption in work. The amount of concrete needs the
interventions and evaluated factors that potentially affect these patient has strongly relates to family and caregiver psycholog-
decisions.49 Resident preferences changed over a 2-year period. ical distress and burden of care.53 Elderly patients who are
Overall, a majority of participants consistently desired car- dying require varying levels of assistance with personal care,
diopulmonary resuscitation, whereas somewhat fewer than half meal preparation, shopping, transportation, paying bills, and
desired medical hydration and nutrition. As time progressed, a submitting forms related to health care. The level of physical
greater proportion of individuals favored medical hydration care may be tremendous and include bathing, turning and
and nutrition. Because this study was of institutionalized resi- positioning, wound care, colostomy care, suctioning, medica-
dents who routinely witness the administration of hydration tion administration, and managing incontinence. If the patient
and nutrition to fellow residents, the authors concluded that is confused or agitated, the strain is even greater, as 24-hour
such interventions become commonplace and are easily care may be necessary. In the palliative care setting, where the
accepted by other residents. This practice, they believe, has an treatment goals are supportive and often include management
inuence on the residents decision to accept hydration. of symptoms such as pain, respiratory distress, and delirium,
the patient is frequently conned to home, with a greater bur- life of direct caregivers include educational programs, improve-
den placed on the live-in spouse or child. ment in home care supports, psychoeducational programs,
In one study comparing the impact of caregiving in curative and improved access to health care professionals who provide
and palliative care settings, two study groups were evaluated symptom management and end-of-life care.
267 patients received active, curative treatment, and 134 patients Family grief therapy during the palliative phase of illness
received palliative care through a local hospice. Patients in the has also improved the psychosocial quality of life of caregivers.
palliative care group were more physically debilitated and had Kissane and colleagues58 used a screening tool to identify dys-
poorer performance status. The mean age was 59.7 for the functional family members and relieve distress through a
curative group and 57.9 for the palliative care group. Care- model of family grief therapy sessions. Smeenk and colleagues59
giver quality-of-life measures demonstrated that family demonstrated improved quality of life of direct caregivers after
caregivers of patients receiving palliative care had lower quality- implementation of a transmural home care intervention pro-
of-life scores and worse overall physical health than family gram for terminal cancer patients. Macdonald60 demonstrated
caregivers of patients receiving curative care.54 Families with that massage as a respite intervention for caregivers was success-
low socioeconomic status and those with less education were ful in reducing physical and emotional stress, physical pain, and
more distressed by the patients illness. sleep difculties. This nonpharmacological and noninvasive
Transitions in spousal caregiving have been investigated in intervention is highly valued and accepted by caregivers because
respect to the level/intensity of caregiving and its impact on of its simplicity and benecial effects.
the overall health of the caregiver. In 428 subjects who were
assessed at four intervals over a 5-year period, those who tran-
sitioned to heavy caregiving had more depressive symptoms o]
than those who transitioned into moderate caregiving. Heavy Pharmacological Considerations
caregivers scored higher in the number of health-risk behav-
iors between the second and third observations, concluding Pharmacological intervention is the mainstay of treatment for
that these outcomes become worse over time.55 symptom management in palliative care of the elderly patient.
Family caregivers of people with dementia face particularly Knowledge of the parameters of geriatric pharmacology can
stressful demands because of the exhaustive phase of pro- prevent serious morbidity and mortality when multiple drugs
longed dependence. In one study, two goals of the caregiving are used to treat single or multiple symptoms, or when, in the
to patients with dementia experience were looked at: the practice of chronic pain management, trials of sequential opi-
description of the caregiving experience, and the short- and oids (opioid rotation, or opioid switch) are used.
long-term responses to bereavement. Two hundred sixty ve
in-home caregivers were assessed at 6-, 12-, and 18-month Pharmacokinetics
intervals. The mean length of caregiving was 3 years. More
than one half of the caregivers reported that they felt they were The four components of pharmacokinetics are absorption,
on duty 24 hours a day, 48% had to reduce their work load, distribution, metabolism, and excretion. In the absence of
and 18% had to stop work entirely. malabsorption problems and obstruction, oral medications
In another study of 231 caregivers of cancer patients who are well tolerated in the elderly population. With aging, there
were at home, the goals were to evaluate family caregivers is some decrease in gastric secretion, absorptive surface area,
quality of life, nancial burden, and experience of managing and splanchnic blood ow. Most studies show no difference in
cancer pain in the home.57 Family caregivers scored worse in oral bioavailabilitythe extent to which a drug reaches its site
areas of coping difculty, anxiety, depression, happiness, and of action. There is little literature on the absorption of long-
feeling in control. In areas of physical well-being, the greatest acting drugs in the elderly, including controlled or sustained-
problems were sleep changes and fatigue. Other quality-of-life release opioids, and transdermal opioids commonly used in
disruptions included interference with employment, lack of the treatment of chronic cancer pain in the elderly patient.
support from others, isolation, and nancial burden. The esti- Controlled-release dosage forms are generally more appro-
mated average time spent caregiving was more than 12 hours priate with drugs that have short half-lives (less than 4 hours)
per day; the estimated time for pain management was more and include many of the shorter-acting opioids, including
than 3 hours per day. Family caregivers reported worse out- morphine and hydromorphone. Generally, it is safer to use opi-
comes than patients did in their perception of the pain inten- oids that have shorter half-lives in the elderly cancer patient.
sity, pain distress to themselves, feeling able to control the Distribution refers to the distribution of drug to the inter-
pain, and family concern about pain in the future. Caregivers stitial and cellular uids after it is absorbed or injected into the
reported fear of future pain, fear of tolerance, and concern bloodstream. There are several signicant physiological fac-
about addiction and harmful effects of analgesics. The authors tors that may inuence drug distribution in the elderly pallia-
concluded that educational programs in pain management are tive care patient. An initial phase of distribution reects cardiac
needed and that further educational efforts should also output and regional blood ow. The heart, kidneys, liver, and
address the emotional aspects of managing cancer pain in the brain receive most of the drug after absorption. Delivery to fat,
home. Interventions directed toward improving the quality of muscle, most viscera, and skin is slower; it may take several
hours before steady-state concentrations are reached. Although The effect of age on renal function is quite variable. Some
cardiac output does not change with age, chronic conditions, studies show a linear decrease in renal function, amounting to
including congestive heart failure, may contribute to a decrease decreased glomerular function; other studies indicate no change
in cardiac output and regional blood ow. in creatinine clearance with advancing age.64 Renal mass
This second phase of drug distribution to the tissues is decreases 25% to 30% in advanced age, and renal blood ow
highly dependent upon body mass. Body weight generally decreases 1% per year after age 50.64 There are also decreases
decreases with age, but more importantly, body composition in tubular function and reduced ability to concentrate and
changes with age. Total body water and lean body mass decrease, dilute the urine. In general, the clearance of drugs that are
while body fat increases in proportion to total body weight. secreted or ltered by the kidney is decreased in a predictable
The volume-of-distribution changes are mostly for highly manner.
lipophilic and hydrophilic drugs, and the elderly are most sus- For example, delayed renal excretion of meperidines
ceptible to drug toxicity from drugs that should be dosed on metabolite, normeperidine, may result in delirium, central ner-
ideal body weight or lean body weight. Theoretically, highly vous system (CNS) stimulation, myoclonus, and seizures.
lipid-bound drugs, for example, long-acting benzodiazepines Meperidine is not recommended for chronic administration
and transdermal fentanyl, both commonly prescribed to el- in any patient but is of special concern for elderly patients with
derly patients, may have an increased volume of distribution borderline renal function. Other drugs that rely on renal excre-
and a prolonged effect if drug clearance is constant.61 Water- tion include nonsteroidal antiinammatory agents, digoxin,
soluble drugs (e.g., digoxin) may have a decreased volume of aminoglycoside antibiotics, and contrast media.
distribution and increased serum levels and toxicity if initial
doses are not conservative. To avoid possible side effects in a
frail elderly patient, it may be safe to start with one half the
dose usually prescribed for a younger patient.
Another host factor that inuences drug distribution is
plasma protein concentrations.62,63 Most drugs, including anal- Table 353
Risk Factors for Medication Problems in the Elderly
gesics, are extensively bound to plasma proteins. The propor-
Palliative Care Patient
tion of albumin among total plasma proteins decreases with
frailty, catabolic states, and immobility, commonly seen in 1. Multiple health care prescribers (e.g., multiple
many elderly patients with chronic conditions. A decrease in physicians, nurse practitioners)
serum albumin can increase the percentage of free (unbound) 2. Multiple medications
drug available for pharmacological effect and elimination. In 3. Automatic rells
this setting, standard doses of medications lead to higher lev-
4. Age-related physiological pharmacokinetic changes
els of free (unbound) drug and possible toxicity.
5. Age-related pharmacodynamic changes
The liver is the major site of drug metabolism. Hepatic
metabolism of drugs is dependent on drug-metabolizing 6. Sensory losses: visual, hearing
enzymes in the liver. The hepatic microenzymes are responsi- 7. Cognitive defects: delirium, dementia
ble for this biotransformation. With advanced age, there is 8. Depression
a decrease in liver weight by 20% to 50% and liver volume 9. Anxiety
decreases by approximately 25%.64 In addition, a nondrug
10. Knowledge decits related to indication, action, dosing
marker for hepatic functional mass, galactose clearance, is schedule, and side effects of prescribed medication
decreased by 25% in advanced age. Associated with these
11. Complex dosing schedule or route of administration
changes in liver size and weight is a decrease in hepatic blood
flow, normalized by liver volume. This corresponds to a decrease 12. Comorbid medical conditions: frailty, cerebrovascular
disease, cardiac disease, musculoskeletal disorders,
in liver perfusion of 10% to 15%. Drugs absorbed from the
advanced cancer
intestine may be subject to metabolism and the rst-pass effect
in the liver, accounting for decreased amounts of drug in the 13. Self-medication with over-the-counter medications,
herbal remedies
circulation after oral administration. The end result is decreased
systemic bioavailability and plasma concentrations.64 14. Lack of social support or lives alone
The process of biotransformation in the liver is largely 15. Alcoholism
dependent upon the P-450 cytochrome. During biotransfor- 16. Financial concerns
mation, the parent drug is converted to a more polar metabo- 17. Illiteracy
lite by oxidation, reduction, or hydrolysis. The resulting
18. Misconceptions about specic medications
metabolite may be more active than the parent drug. The (e.g. addiction)
cytochrome P-450 has been shown to decline in efciency with
19. Language barrier
age. These altered mechanisms of drug metabolism should be
considered when treating the elderly palliative care patient Source: Adapted from Walker et al. (1996), reference 155.
with opioids, long-acting benzodiazepines, and neuroleptics.
palliative care patient (Table 353). When multiple drugs are

Table 354 used to treat symptoms, the side-effect prole may increase,
Medication Assessment in the Elderly Palliative
potentially limiting the use of one or more drugs. For example,
Care Patient
when using an opioid and a benzodiazepine in treating chronic
1. Identify prior problems with medications. pain and anxiety in the elderly patient, excessive sedation may
2. Identify other health care providers who prescribe occur, limiting the amount of opioid that can be administered.
medications. Table 354 outlines the components of a comprehensive med-
3. Obtain a detailed history of present medication use at all ication assessment in the elderly palliative care patient.
patient contacts. Include over-the-counter and herbal
remedies and dosage, frequency, expected effect, and side
effects. When assessing efcacy of pain management, ask o]
about PRN rescue doses. Symptom Management During the Last Weeks
4. Identify high-risk medications and assess for side effects of Life: Special Concerns
or drugdrug interactions.
5. Evaluate the need for drug therapy by performing a Numerous studies have evaluated symptoms during the last
comprehensive physical examination and symptom weeks of life and indicate that patients experience a high
assessment, and obtain appropriate laboratory data. degree of symptom distress and suffering. In one study by
6. Assess functional, cognitive, sensory, affective, and Seale and Cartwright,66 there were age-related difference in the
nutritional status. incidence of mental confusion, loss of bladder and bowel con-
7. Review patients and family members level of trol, as well as seeing/hearing difculties. There was no age-
understanding about indications, dosing, and side effects. related difference in patients reporting pain (72%), trouble
8. Identify any concerns about medications (cost, fears, breathing (49%), loss of appetite (47%), drowsiness (44%),
misconceptions). and other symptoms, including sleeplessness, constipation,
depression, vomiting, and dry mouth.
9. Identify presence of caregiver or support person and
include in all assessments. Studies have documented the most prevalent and difcult-
to-manage symptoms in dying patients, including pain, dysp-
10. Implement strategies to increase support if lacking
nea, and confusional states.6769 In one evaluation of the
(e.g., skilled or nonskilled home care nursing support,
community groups, other family members, community- symptom burden of seriously ill hospitalized patients in ve
based day programs). tertiary care facilities, pain, dyspnea, anxiety, and depression
caused the greatest symptom burden.70 In this study, patients
Source: Adapted from Walker et al. (1996), reference 155. for whom hospital interviews were not available had more
dependencies in daily living and more comorbidities, were
older, sicker, poorer, and more often had respiratory failure
and multiorgan system failure.
Medication Use in the Elderly: Problems The complex symptomatology experienced by elderly
with Polypharmacy patients, especially those with cancer and multiple comorbidi-
ties, demands that an aggressive approach to symptom assess-
Older individuals use three times more medications than ment and intervention be used. Devising a palliative plan of
younger people do. They account for approximately 25% of care for the elderly patient who is highly symptomatic or who
physician visits and approximately 35% of drug expenditures. is actively dying requires ongoing communication with the
Elderly patients are more likely to be prescribed inappropri- patient and family; assessment of patient and family under-
ate medications than younger patients are.65 Advancing age standing of goals of care and religious, cultural and spiritual
alone does not explain the risk of adverse drug reactions, and beliefs; access to community agencies; psychological assess-
polypharmacy is a consistent predictor. As noted earlier, in the ment; and patient and family preferences regarding advance
palliative care setting, elderly patients often have more than directives. Dimensions of a palliative care plan for the elderly
one comorbid medical condition, necessitating treatment with are outlined in Table 355. The management of three prevalent
many medications, which places them at greater risk of adverse and distressing symptoms experienced by the elderly at the
drug reactions. In addition, new medications not only place the end of lifedyspnea, pain, and deliriumis discussed below.
elderly at risk of adverse drug reactions, they also increase Each of these symptoms is discussed in greater detail in other
the risk of signicant drug interactions. For example, the addi- chapters.
tion of an antacid to an elderly patient already on corticos-
teroids for bone pain may signicantly decrease the oral Dyspnea
corticosteroid effect due to decreased absorption.
Understanding pharmacodynamics in relationship to age- Dyspnea may be one of the most frightening and difcult
related physiological changes can assist the clinician in evaluat- symptoms an elderly patient can experience. A subjective feel-
ing the effectiveness and side-effect prole in the elderly ing of breathlessness or the sensation of labored or difcult
Respiratory muscle weakness may play a major role in

Table 355 some types of dyspnea. Palange and colleagues71 found that
Dimensions of a Palliative Plan of Care for the malnutrition signicantly affected exercise tolerance in patients
Elderly Patient
with COPD by producing diaphragmatic fatigue. In patients
1. Assess extent of disease documented by imaging studies with cachexia, the maximal inspiratory pressure, an indicator
and laboratory data. of diaphragmatic strength, is severely impaired. Cachexia and
2. Assess symptoms, including prevalence, severity, and asthenia occur in 80% to 90% of patients with advanced can-
impact on function. cer, and are also prevalent in elderly patients with multiple
3. Identify coping strategies and psychological symptoms, comorbid psychiatric and medical conditions. These mecha-
including presence of anxiety, depression, and suicidal nisms may affect the development of dyspnea and fatigue in
tendencies. the elderly who have advanced nonmalignant and malignant
4. Evaluate religious and spiritual beliefs. disease. Ripamonti and Bruera72 have suggested that in some
5. Assess overall quality of life and well-being. Does the
patients, dyspnea may be a clinical presentation of overwhelm-
patient feel secure that all that can be done for them is ing cachexia and asthenia.
being done? Is the patient satised with the present level The multiple etiologies of dyspnea in the dying elderly
of symptom control? patient include both malignant (e.g., tumor inltration, supe-
6. Determine family burden. Is attention being paid to the rior vena cava syndrome, pleural effusion), treatment-related
caregiver so that burnout does not occur? If the spouse or (Adriamycin-induced cardiomyopathy, radiation-induced
caregiver is elderly, is he or she able to meet the physical pneumonitis, pulmonary brosis), and nonmalignant causes
demands of caring for the patient? (e.g., metabolic, structural).
7. Determine level of care needed in the home if the patient Two causes of dyspnea, deep vein thrombosis (DVT) and
is dying. pulmonary embolism (PE), are prevalent in the elderly and are
8. Assess nancial burden on patient and caregiver. Is an often unrecognized and undiagnosed. They may present as
inordinate amount of money being spent on the patient pleuritic chest pain with or without dyspnea and hemoptysis.
and will there be adequate provisions for the elderly The risk factors in the elderly include increased venous stasis
caregiver when the patient dies? in the legs, impaired brinolysis, coagulopathies, recent sur-
9. Identify presence of advance care planning requests. Have gery, immobility, and congestive heart failure. Treatment is
the patients wishes and preferences for resuscitation, dependent on accurate diagnosis, and an estimate of risks ver-
articial feeding, and hydration been discussed? Has sus benets should be considered in deciding on a course of
the patient identied a surrogate decision-maker who action. Ventilation-perfusion scans are the most reliable indica-
knows their wishes? Is there documentation regarding tor of whether a PE has occurred, and the identication of a DVT
advance directives? as the source of the PE can be accomplished through noninvasive
Doppler studies of the legs. Whether it is prudent or compas-
Source: Adapted from Improving care at the end of life (1997),
reference 156. sionate to perform these studies in the elderly patient who is
dying should be considered. In the elderly patient who is not
actively dying, diagnostic tests can be safely performed. Treat-
breathing, dyspnea contributes to severe disability and ment with anticoagulants in addition to supportive symptom
impaired quality of life. Dyspnea and fear of dyspnea pro- management will reduce the symptom burden and suffering.
duce profound suffering for dying patients and their fami-
lies. This section will outline the special needs for elderly Treatment of Dyspnea
patients, with a focus on physiological factors that increase
the risk of dyspnea. When possible, relief of dyspnea is aimed at treatment of the
underlying disease process, whether malignant or nonmalignant
Physiological Correlates in the Elderly That in origin. Symptomatic interventions are used when the pro-
Increase Risk of Dyspnea cess is not reversible. Both pharmacological and nonpharma-
cological interventions should be employed. One patient may
The effects of aging produce a clinical picture in which respi- present with multiple etiologies; therefore, multiple interven-
ratory problems can develop. With aging, the elastic recoil of tions are indicated.
the lungs during expiration is decreased due to less collagen Therapeutic interventions are based on the etiology and
and elastin. Alveoli are less elastic and develop brous tissue. include pharmacological (e.g., bronchodilators, steroids,
The stooped posture and loss of skeletal muscle strength often diuretics, vasodilators, opioids, sedatives, antibiotics), proce-
found in the elderly contribute to reduction in the vital capacity dural (e.g., thoracentesis, chest tube placement), nonphar-
and an increase in the residual volume of the lung. Table 356 macological (e.g., relaxation, breathing exercises, music),
outlines the pulmonary risk factors for the development of radiation therapy, and oxygen. At the end of life, the pharma-
dyspnea in the elderly palliative care patient. cological use of benzodiazepines, opioids, and corticosteroids
Table 356
Risk Factors for Dyspnea in the Elderly Palliative Care Patient
Risk Factor Comment

Structural Factors
Increased chest wall stiffness Increase in the work of breathing
Decrease in skeletal muscle, barrel chest, Decrease in maximum volume expiration
increase in anteroposterior diameter
Decrease in elasticity of alveoli Decrease in vital capacity
Other Factors
Anemia
Cachexia
Dehydration Drier mucous membranes, increase in
mucous plugs
Ascites
Atypical presentation of fever Reduced febrile response, decreased
WBC response
Heart failure
Immobility Increased risk of aspiration, DVT, PE
Obesity
Recent abdominal, pelvic, or chest surgery Increased risk of DVT, PE
Lung disease (COPD, lung cancer)
Sources: Adapted from Eliopoulos (1996), reference 157, and Palange et al. (1995), reference 71.
COPD, chronic obstructive pulmonary disease; DVT, deep venous thrombosis; PE, pulmonary embolism; WBC,
white blood cell.
remain the primary treatment. Many palliative care profes- examination reveals breath sounds decreased bilaterally, occa-
sionals advocate the use of morphine to control dyspnea at the sional rhonchi, but no rales or crackles present. She has no dis-
end of life.7276 Often there is reluctance among staff to use tended neck veins, gallop, or peripheral edema. Her respiratory
opioids and sedatives in the elderly due to unfamiliarity with rate is 24 per minute at rest, and she complains of feeling
these medications, lack of experience in treating dyspnea in breathless and anxious. She is also very fatigued and cannot
dying patients, low priority given to this symptom, or fear that sleep at night. She refuses to go to the hospital and says she
these drugs may hasten death in the elderly. Table 357 outlines wants to die in her own bed at home. She also is refusing fur-
management guidelines based on presenting symptoms. Fig- ther aggressive intervention and has signed a home DNR order.
ure 351 reviews the overall assessment and management of o]
dyspnea in the geriatric patient at the end of life.
Suggestions for Assessment and Intervention

9=
case study What further symptom management can be offered to this
An 80-Year-Old Woman with Metastatic Lung Cancer patient?
An 80-year-old woman with metastatic lung cancer to bone, 1. Determine the etiology of the dyspnea in this
mediastinum, and lung has persistent dyspnea related to lym- patient. In the terminally ill patient, dyspnea is often
phangitic spread of disease. She has received radiation therapy due to multiple causes. A thorough history and
to the mediastinum, and she completed a course of physical examination should be performed and will
chemotherapy 2 months ago. She is still at home receiving assist in determining specic interventions. In this
morphine sulfate 30 mg orally every 4 hours, which has been patient, the probable cause of the dyspnea is lym-
very effective for bone pain. She tried long-acting morphine phangitic spread of the malignancy.
but did not like the way it made her feel. She is also receiving 2. Excessive fatigue is present in this patient, and a
prednisone 30 mg orally 2 times daily for bronchospasm, and complete blood count will determine if anemia is
an albuterol inhaler, which she occasionally uses. Physical contributing to fatigue and dyspnea. Consider a trial
Table 357
BREATHES Program for Management of Dyspnea in the Elderly Palliative Care Patient
B-bronchospasm. Consider nebulized albuterol and/or steroids.

R-rales/crackles. If present, reduce uid intake. If patient is receiving IV hydration, reduce uid
intake or discontinue. Consider gentle diuresis with Lasix 2040 mg PO daily, spironolactone
(Aldactone) 100 mg PO daily.
E-effusion. Determine on physical examination or chest x-ray. Consider thoracentesis or chest
tube, if appropriate.
A-airway obstruction. If patient is at risk or has had aspiration from food, puree solid food,
avoid thin liquids, and keep the patient upright during and after meals for at least 1 hour.
T-tachypnea and breathlessness. Opioids reduce respiratory rate and feelings of breathlessness
as well as anxiety. Assess daily. If patient is opioid nave, begin with morphine sulfate 510 mg
PO q4h and titrate opioids 25%50% daily/every other day as needed. Consider an anxiolytic
such as lorazepam (be aware of potential for paradoxical response) 0.52 mg PO b.i.d.t.i.d. Use
of a fan may reduce feelings of breathlessness.
H-hemoglobin low. Consider a blood transfusion if anemia is contributing to dyspnea.
E-educate and support the patient and family during this highly stressful period.
S-secretions. If secretions are copious, consider a trial of a scopalamine patch q72h, atropine
0.30.5 mg SC q4h PRN, glycopyrrolate (Robinul) 0.10.4 mg IM/SQ q412h PRN
Sources: Adapted from Storey and Knight (1996), reference 158, Ripamonti (1999), reference 159; Tobin (1990),
reference 160; Kuebler (1996), reference 161.
of a low-dose stimulant such as Ritalin 2.55 mg 11. Assess functional status and reduce the need for
orally daily in the morning. This may decrease physical exertion. Provide for assistance with daily
fatigue and give her more energy during the day. activities, positioning techniques, and frequent rest
3. Infection can be ruled out with a complete blood periods.
count. If pneumonia is suspected, try to arrange for 12. Address anxiety, provide support and reassurance.
a chest x-ray if the patient agrees or empirically ini- Determine level of support from family and friends,
tiate a trial of oral antibiotics. Although this patient and spiritual and religious beliefs. Reassure patient
has no signs of congestive heart failure on physical that symptoms can be controlled.
examination, it should be ruled out. 13. Incorporate nonpharmacological interventions
4. If available, use pulse oximetry to determine bene- (e.g., progressive relaxation, guided imagery, and
ts of oxygen therapy or try nasal O2 at 3 L/minute. music therapy).
5. The patient is presently receiving morphine sulfate
for pain. Increase her opioids by 25% to 50% to a Pain
dose of 40 to 45 mg orally every 4 hours to assist
with tachypnea and anxiety. The physiological changes accompanying advanced age have
6. Consider a trial with an anxiolytic such as ativan been discussed in this chapter; however it is important to
0.5 mg orally every 812 hours. emphasize that the elderly are more sensitive to both the ther-
7. Consider increasing the prednisone to treat the apeutic and toxic effects of analgesics. The principles of drug
bronchospasm. selection, route of administration, and management of side
8. Encourage use of an albuterol inhaler 3 to 4 times a effects are the same in the elderly population as for younger
day for bronchospasm. adults.
9. If oral morphine cannot be titrated to effect, con-
sider a trial of nebulized morphine 2.5 to 5.0 mg Acetaminophen
every 4 hours, as needed, if available.
10. Consider the benet versus burden of additional Acetaminophen is one of the safest analgesics for long-term use
interventions that are employed. The patient has in the older population and should be used for mild to moder-
stated that no further interventions are to be used. ate pain. It is particularly useful in the management of muscu-
Review the goals of care with the patient and family loskeletal pain and is often used in combination with opioids. In
members. older patients with normal renal and liver function, it can be
High-risk factors identified
Dyspnea present;
perform focused physical assessment.
Identify precipitating causes and etiology.
Exercise/overexertion COPD Cardiomyopathy

Anxiety Cancer Fluid overload
Allergens Renal disease Pericardial effusion
Infection Pulmonary fibrosis Anemia
Sleep apnea Pulmonary embolism Liver disease
GERD Pulmonary hypertension DVT
Pneumonia Congestive heart failure
Evaluate overall goals of care and setting.

Determine if transfer to inpatient facility is indicated.
Implement interventions based on symptoms and goals of care.
Pharmacological: Nonpharmacological:
Bronchodilators Cognitive behavioral approaches
Xanthines Complementary therapy
Oxygen Music/Art therapy
Opioids Change position
Antibiotics Abdominal/diaphragmatic breathing
Corticosteroids Pursed lip breathing
Anticholinergics Limit activity
Diuretics Increase air circulation
Anxiolytics Humidification
Transfusion Cool room
Interventions effective?
Yes No
Continue to assess and adjust Symptoms progressive and

medications as needed. irreversible; re-evaluate management.
Provide more sedating interventions

Figure 351. Dyspnea management in the geriatric patient
with lorazepam, midazolam, propofol.
at the end of life.
used safely and is highly effective for the treatment of additive with opioids and nonopioids. NSAIDs affect analgesia
osteoarthritis. In the setting of renal insufciency, hepatic fail- by reducing the biosynthesis of prostaglandins, thereby inhibit-
ure, or with patients who are drinking heavily or have a history ing the cascade of inammatory events. They also have effects
of alcohol abuse, avoidance of acetaminophen is recommended. on pain receptors, nerve conduction, and may have central
effects.77 The long-term use of traditional NSAIDs, aspirin and
Nonsteroidal Antiinammatory Drugs ibuprofen, are associated with gastrointestinal ulceration, renal
dysfunction, and impaired platelet aggregration.78,79 The
Nonsteroidal antiinammatory drugs (NSAIDs) are useful as cyclooxygenase-2 (COX-2) enzymatic pathway is induced by tis-
initial therapy for mild to moderate pain and can be used as an sue injury or by other inammation-inducing conditions.80
additive with opioids and nonopioids. In particular, NSAIDs are There appears to be less risk of gastrointestinal bleeding with
useful in the treatment of nociceptive pain related to bone or short-term use of the COX-2 selective NSAIDs.81 In particu-
joint disease. When used concurrently with opioids, lower doses lar,8285 NSAIDs are useful in the treatment of nociceptive pain
of opioids may be an additional benet. NSAIDs are useful as related to bone or joint disease. When used concurrently with
initial therapy for mild to moderate pain and can be used as an opioids, lower doses of opioids may be an additional benet.
Elderly patients with a history of ulcer disease are most vul- serum creatinine does not indicate normal renal function; it is
nerable to the side effects of these drugs, which can cause renal prudent to obtain a 24-hour creatinine clearance to accurately
insufciency and nephrotoxicity. Cognitive dysfunction has determine renal function.
been reported with the use of salicylates, indomethacin, Morphine is the most commonly prescribed opioid because
naproxen, and ibuprofen. Also, NSAIDs are problematic in el- of its cost and ease of administration. Morphine can be admin-
derly patients with congestive heart failure, peripheral edema, istered as an immediate-release tablet or a liquid formulation,
or ascites. In the palliative setting, consideration of the risks in a controlled-release tablet administered every 8 to 12 hours
versus the benets to the elderly patient should be done. If, for (MS Contin), or every 24 hours (Avinza, Kadian). Plasma clear-
example, the use of NSAIDs provides effective analgesia, and ance of morphine decreases with age.87
the life expectancy of the patient is limited (days to weeks), it When administering morphine for long-term use, the
is probably prudent to initiate this therapy. metabolites of morphinemorphine-3 and -6 glucuronide
may accumulate with repeated dosing, especially in the setting
Opioids of impaired renal or hepatic function.86,88,89 If, after several
days of treatment with morphine, the elderly patient develops
In older patients with moderate to severe pain who have lim- side effects that include sedation, confusion, or respiratory
ited prior treatment with opioids, it is best to begin with a depression, it may mean that there is an accumulation of these
short-half-life agonist (morphine, hydromorphone, oxycodone). metabolites, and the opioid should be changed.
Shorter-half-life opioids are generally easier to titrate than Hydromorphone (Dilaudid) is available in oral tablets, liq-
longer-half-life opioids such as levorphanol or methadone, uids, and parenteral formulations and will soon be available in
and in the elderly may have fewer side effects. Recent research a long-acting preparation. The main metabolite of hydro-
has demonstrated the importance of both liver biotransfor- morphone (H3G) may lead to the same toxicity as seen with
mation of metabolites and renal clearance of these metabo- morphinemyoclonus, hyperalgesia, and seizures, especially
lites. Most opioids are converted to substances that may have a in the setting of renal failure.90
higher potency than the parent compound or produce more Oxycodone is a synthetic opioid available in a long-acting
adverse effects with repeated dosing and accumulation.86 Table formulation (OxyContin), as well as immediate-release tablets
358 outlines the most commonly used opioids and their and a liquid preparation. In the oral formulation, it is one
metabolites. third to one half more potent than oral morphine. The cost of
When prescribing opioids in the older population, it may OxyContin may be prohibitive to some patients on limited
be helpful to obtain baseline renal function studies. A normal incomes.
Table 358
Common Opioids and Their Metabolites
Opioid Metabolite Comment
Codeine Codeine-6 May cause more nausea, vomiting, and

glucuronide constipation than other opioids
Oxycodone Noroxycodone,
oxymorphone
Dextropropoxyphene Norpropoxyphene Routine use is not advised because metabolites
can accumulate with repetitive dosing.
Methadone Metabolite Pharmacokinetics are variable. Renal excretion
inactive is pH dependent; fecal excretion accounts for
the greatest part of clearance.
Hydromorphone H3G, H6G Eliminated by the kidney
Fentanyl Inactive and Highly lipophilic, which enables it to be
nontoxic absorbed through the skin
metabolites Less than 10% excreted in the urine
Morphine M3G, M6G M6G accumulates in the blood and
crosses the bloodbrain barrier.
Meperidine Normeperidine Half as potent an analgesic as meperidine and
23 times more potent as a convulsant;
toxicity is not reversed by naloxone; avoid
chronic use because normerperidine
accumulates with repeated dosing
Fentanyl is a highly lipophilic soluble opioid, which can be

administered spinally, transdermally, transmucosally, and Table 359
Opioid Use in the Elderly Patient at the End of Life
intravenously. Transdermal fentanyl (Duragesic) is especially
useful when patients cannot swallow, have difculty adhering Opioid Comments
to an oral regimen, or have side effects to other opioids. There
Morphine Observe for side effects with repeated
is some suggestion that transdermal fentanyl may produce less
dosing; continuous or sustained
constipation when compared with long-acting morphine.
release may not be tolerated even after
Fever, cachexia, obesity, and ascites may have a signicant effect a trial with immediate release
on absorption, predictability of blood levels, and clinical
Hydromorphone Short half-life; may be safer than
effects.91,92 The fentanyl patch can be used safely in the older
(Dilaudid) morphine
patient, but patients should be monitored carefully. It might
Propoxyphene Avoid usemetabolite causes CNS
be helpful when initiating therapy with the transdermal patch
(Darvon, Darvocet) and cardiac toxicity
to begin with a short-acting opioid, oxycodone 5 mg every
4 hours, to monitor the patient over 5 to 7 days. If this dose is Codeine May cause excessive constipation,
nausea and vomiting
tolerated, conversion to a fentanyl 25-mcg patch can be safely
done. If, after initiation with the fentanyl patch, side effects Methadone Use cautiously, long half-life may
develop, it is important to remember that they may persist for produce excessive side effects; requires
careful monitoring, especially during
long periods (hours or even days) after the patch is removed.
rst 72 hours after initiation. If it is
The frail elderly, however, who have experienced multiple side
indicated, it may be safer to use a
effects from opioids, may not do well with this route of admin- short-acting opioid as a rescue dose.
istration. If this is the case, oral transmucosal fentanyl citrate
Pentazocine (Talwin) Opioid agonist/antagonist should not
(OTFC or Actiq) may be tried; it is composed of fentanyl on
be used; may cause CNS side effects
an applicator that patients massage or rub against the oral (delirium, agitation)
mucosa. Absorption occurs rapidly, and many patients begin
Transdermal Long half-life (1224 h) is used
to have relief after 5 to 10 minutes. This formulation is espe-
fentanyl patch cautiously in the frail elderly or in
cially useful in settings where rapid onset of analgesia is needed, elderly with multiple comorbid
such as with severe breakthrough pain, or during a procedure conditions; cannot titrate easily. If
or dressing change. This formulation is only to be used in side effects develop, will last at least
opioid-tolerant patients who are already receiving an around- 1224 hours after patch is removed
the-clock opioid to manage baseline pain. Adults should start Meperidine Avoid use in elderly due to CNS
with 200 mcg, and the dose should be titrated as needed.93 toxicity
Methadone can be safely used in the older adult, provided Oxycodone Useful for moderate to severe pain
they are carefully monitored. The half-life of methadone can control
be 24 to 72 hours and allows for prolonged dosing intervals.
The long half-life increases the potential for drug accumula- Source: Adapted from McCaffery and Pasero (1999), reference 162.
tion and side effects before the development of steady state
blood levels, thus placing the patient at risk for sedation and
possible respiratory depression. Because of this possibility,
close monitoring of these patients should be done during the require high doses of opioids that cannot be administered
rst 7 to 10 days of treatment. When using high doses or when orally. They may be administered in a variety of ways, includ-
initiating the IV route, obtaining a baseline EKG is recom- ing the IV and subcutaneous route, using a patient-controlled
mended because of the possibility of QT wave abnormalities.94 analgesia (PCA) device. A careful evaluation of the skin in the
Methadone may bind as an antagonist to the NMDA receptor, elderly patient should be done before initiation of subcuta-
which may be useful in the management of neuropathic neous administration. If the patient has excessive edema, a
pain.95 From a cost perspective, it is one of the less costly opi- very low platelet count, or skin changes related to chronic
oids, making it appealing to some patients on limited incomes. steroid use, absorption may be impaired or subcutaneous tis-
As in younger individuals, the use of meperidine for the sue may not sustain repeated dosing, even with a permanent
management of chronic cancer pain is not recommended. The indwelling butterfly catheter. Infusion devices with the capa-
active metabolite of meperidine is normeperidine, which is a bility of patient-administered rescue dosing can be safely
proconvulsant. The half-life of normeperidine is 12 to 16 used in the elderly cancer patient. It is important to remem-
hours. With repeated dosing, accumulation of normeperidine ber that severe cognitive impairment should not deter the
can result in CNS excitability, with possible tremors, myoclonus, use of IV administration, especially in the elderly patient at
and seizures. Table 359 outlines guidelines for opioid use in the end of life. Choice of analgesics and routes of adminis-
the elderly patient. tration must be based on individual assessment of each
Parenteral routes of administration should be considered patient. Table 3510 outlines indications for a subcutaneous or
in elderly patients who require rapid onset of analgesia, or IV PCA pump.
toxic and if there is any metabolic etiology for his

Table 3510 confusion. His digoxin level is normal, and his elec-
Indications for a Subcutaneous or Intravenous PCA Pump
trolytes and renal and liver function studies are
Oral route not toleratedpatient cannot swallow (postop, normal.
nausea/vomiting) 3. A change in opioid is indicated, because this may be
Oral absorption impaired or variable contributing to his confusion.
Bowel obstructionpartial or complete 4. An evaluation for the etiology of the nausea and
vomiting should be done. A history of onset, dura-
Escalating pain that needs to be managed quickly
tion, temporal characteristics, and
Severe breakthrough or incident-related pain exacerbating/relieving factors should be obtained. A
Dose-limiting side effects with other routes of thorough physical examination is performed, with
administration exist special attention to the abdominal and rectal exami-
When managing pain and other symptoms at the end nation. The physical examination reveals that bowel
of life sounds are present, and the rectal exam reveals
Suspected misuse/abuse of other opioids via other routes of retained feces in the rectal vault.
administration 5. An abdominal x-ray is done and shows extensive
retained feces but no bowel obstruction. An abdom-
inal CAT scan done 1 month previously revealed
extensive intrapelvic and intraabdominal disease.
6. It has been determined that the etiology of the nau-
Dose Titration. After initiation with an opioid, a stepwise esca-
sea and vomiting is related to severe constipation
lation of the opioid dose should be done until adequate anal-
and may be worsened by intermittent extrinsic com-
gesia or intolerable side effects develop. The increased sensitivity
pression of the bowel by tumor inltration.
of the elderly to opioid side effects suggests that careful titra-
7. The severe constipation may also be contributing
tion and escalation should be performed.96 It is generally safe
to the development of confusion.
to begin with a dose 25% to 50% less than the dose for a
8. The decision is made to switch the patient to
younger adult, especially if the elderly patient is frail or has a
another opioid. In selecting another opioid, factors
history of side effects from prior opioid use. Generally, it is safe
to consider include half-life, duration of action, and
to titrate opioids 25% to 50% every 24 to 48 hours, although a
route of administration. The decision is made to
less aggressive approach may be necessary in elderly patients.
start the patient on a continuous infusion of mor-
phine until the nausea and vomiting resolve and
9= then convert the patient to oral morphine. The
case study equianalgesic dose table should be used as a guide.
An 80-Year-Old Man with Bladder Cancer Because of the existence of incomplete cross-
tolerance between drugs, advanced age, and cogni-
An 80-year-old man with bladder cancer and extensive
tive changes, the alternative opioid should be
intraabdominal and pelvic disease is receiving hydromor-
reduced by 50% to 75%.
phone 6 mg orally every 4 hours and is reporting inadequate
9. Disimpaction was attempted but could not be toler-
pain relief, with a pain intensity of 7/10. He also is having
ated. A bowel regimen of an oil-retention enema
intermittent nausea and vomiting. He has been on this dose
followed by a Fleets enema was tolerated, and the
for about 6 weeks and is reporting having some confusion for
patient had a large bowel movement. The patient
the past week, which his wife has corroborated. He is also
was also started on an oral regimen of Senokot
having periods of severe incidental pain related to movement.
2 tabs orally twice a day and Colace 300 mg orally
He has no as needed rescue doses ordered. For the past
daily.
2 weeks, he has been in bed most of the time. He also reports
constipation, with no bowel movement for 5 days.
o]
Management of Side Effects Related to Opioids. The elderly
with multiple medical conditions, who are frail and bedbound,
Case Analysis. What evaluation of this patient should be done
are at greatest risk for potential side effects of opioids due to
and what changes in his opioid regimen should be made?
age-related alterations in pharmacokinetics, specically distri-
1. The etiology of the confusion should be determined. bution and elimination. Avoiding side effects by starting low
A careful review of all medications should be done, and going slow is common advice given to many clinicians
and all centrally acting medications discontinued. In when treating elderly patients, but this advice may run the risk
this patient, his only additional medication is digoxin. of undertreatment of pain. Careful monitoring and frequent
2. A digoxin level and appropriate laboratory data assessment can prevent a minor side effect from becoming
should be obtained to determine if he is digoxin life-threatening in the elderly.
For mild nausea, vomiting, sedation, or confusion, it might Adjuvant Analgesics and Treatment
be helpful to decrease the 24-hour total dose by 25% if the
patient has adequate analgesia and is taking only a minimal Several nonopioid medications have been found to be analgesic.
number of as needed rescue doses in a 24-hour period. This These drugs alter, attenuate, or modulate pain perception. They
strategy avoids a complete change in opioid, although anecdo- may be used alone or in combination with opioids or nonopioid
tally, this approach may be useful for a limited time only; if the analgesics to treat many different pain syndromes, including
pain escalates, this will necessitate a titration of the opioid, and neuropathic pain. Included in this category are antidepressants,
the side effects will return. anticonvulsants, N-methyl-D-aspartate (NMDA) antagonists,
Nausea and vomiting are common with some opioids and corticosteroids, and local anesthetics. All of these medications
are due to activation of the chemoreceptor trigger zone in the have side-effect proles that can be especially harmful to the
medulla, vestibular sensitivity, and delaying gastric empty- older patient, and careful monitoring is required.
ing.97 If nausea and vomiting occur at the initiation of ther- Tricyclic antidepressants (TCAs) have been the most widely
apy, it is usually transient and self-limiting. Patients should be studied class of adjuvant medications for neuropathic pain.
prescribed antiemetics on an as-needed basis. Nausea and The action of these drugs is probably due to interruption of
vomiting should be aggressively treated in the older adult norepinephrine and serotonin-mediated mechanisms in the
because of the dangers of dehydration and the need for hos- brain.101 Side effects, namely the anticholinergic side effects,
pitalization. often limit the use of these medications. Dry mouth, urinary
Treating the side effect can be effective but the risk of retention, constipation, blurred vision, tachycardia and delir-
polypharmacy remains. If, for example, the elderly patient is ium are some of the more common side effects. Nortriptyline,
experiencing sedation from the opioid, it may be wiser to a secondary amine, may be preferred in the older adult because
decrease the 24-hour total dose rather than add a psychostim- it produces less orthostatic hypotension than amitriptyline,
ulant, which can produce irritability, tremors, anxiety, and and desipramine may have lesser anticholinergic side effects
insomnia. If decreasing the dose cannot be done, a small dose than amitriptyline. TCAs are contraindicated in patients with
of a psychostimulant such as Ritalin 2.5 mg orally twice a day, coronary artery disease, narrow-angle glaucoma, and signi-
or Provigil 100 mg orally twice a day can be effective in con- cant prostatic hyperplasia. When initiating therapy, start the
trolling daytime sedation.98 Changing the opioid can be dose low, monitor patients, and titrate the dose in 10-mg
another strategy to minimize or treat side effects. This inter- increments every 7 to 10 days because tolerance to side effects
vention can be effective in the management of opioid- develops.
induced nausea and vomiting, especially if the patient has had Anticonvulsants are used to control sharp, shooting, burn-
limited exposure to opioids. Again, this strategy eliminates ing, electric, and stabbing pain, typical sensations found in
the use of an additional medication with its own potential patients with neuropathic pain. Their analgesic effect is believed
side effects. to be related to the slowing of peripheral nerve conduction in
The addition of an adjuvant such as an NSAID has been primary afferent bers.102 Several different anticonvulsants
shown to be effective in reducing the opioid requirement, thus are useful for neuropathic pain, including carbamazepine,
allowing a reduction in the 24-hour opioid dose. Use of adju- gabapentin, phenytoin, and valproic acid. Carbamazepine
vants will be discussed in the next section. should be used cautiously because of the side-effect prole
The elderly are particularly susceptible to opioid-induced blood dyscrasias can occur.103 Gabapentin is thought to have
constipation, and laxative and stool softener should be pre- several different mechanisms of action, including having
scribed whenever an opioid is prescribed.99 Tolerance to the NMDA antagonist activity. The most effective analgesic doses
constipating effects of opioids does not occur, and patients range from 900 mg to 3600 mg/day, in divided doses every 8
need to be instructed regarding the ongoing need for laxatives hours.104105 Evidence supports the efcacy of gabapentin in
and stool softeners. Constipation can be life-threatening in the several painful disorders, including diabetic neuropathy,104
debilitated elderly patient, especially if it is unrecognized and postherpetic neuralgia,105 thalamic pain, spinal cord injury,106
untreated. The initial presentation of opioid-induced consti- and restless legs syndrome.107 The starting dose in elderly
pation may be confusing. Abdominal signs and symptoms patients can begin as low as 100 mg a day, titrated by 100 mg a
including pain, distension, and nausea may be absent, and the day every 3 days, until the onset of analgesia. The most com-
patient may present with confusion, depressed mood, and loss monly reported side effects of gabapentin are somnolence,
of appetite. Assessment of the elderly patient should include dizziness, ataxia, tremor, and fatigue. Other anticonvulsants
all medications including over-the-counter drugsiron that have been used in the management of neuropathic pain
preparations, antacids, and drugs with anticholinergic proper- include lamotrigine (Lamictal), topiramate (Topamax), zon-
ties. A bowel regimen should be routinely prescribed includ- isamide (Zonegran), and levetiracetam (Keppra), although no
ing senna stool softeners. Fluids should be encouraged, but randomized controlled studies are available.
maintaining adequate hydration may be difcult for some NMDA antagonists are believed to block the binding of
older patients. In addition, the intake of uids may further excitatory amino acids, such as glutamate, in the spinal cord.
worsen other symptoms, including peripheral edema, dysp- Medications that inhibit this receptor interfere with the trans-
nea, ascites, and other sites of third spacing. mission of pain across the synaptic area. Methadone, ketamine,
and dextromethorphan are all NMDA antagonists thought to Radiation therapy is extremely helpful in relieving painful
have analgesic effects in the management of neuropathic bone lesions. In many instances, single-fraction external beam
pain.108,109 Ketamine should be used with caution because of its therapy can be used. Onset of relief can be fairly rapid, often
psychomimetic effects, and routine use is not recommended. within days of treatment and may be a helpful intervention
At the end of life, it has been used in the management of when patients are having side effects to opioid therapy. Unless
refractory neuropathic pain.110 a single fraction is considered, at the end of life it is not a prac-
Corticosteroids have specic and nonspecic effects in tical intervention.
managing pain, including treatment of painful nerve or spinal Radionuclide therapy is often helpful when there is wide-
cord compression, reducing tissue edema and inammation, spread bony metastatic disease that cannot be easily targeted
and by lysis of some tumors. The mechanism of effect is by with localized radiotherapy.124 Strontium (Metastron) is a
inhibition of prostaglandin synthesis and decreasing edema radiopharmaceutical calcium analogue taken up by the skele-
surrounding neural tissues.111 Corticosteroids are the standard ton into active sites of bone remodeling and metastasis. A
treatment for malignant spinal cord compression (dexam- large clinical trial demonstrated that strontium was an effec-
ethasone 16 to 96 mg/day). They may be useful in the manage- tive adjuvant to local radiotherapy, and that it reduced disease
ment of painful malignant lesions involving the brachial progression, decreased new sites of pain, and decreased sys-
or lumbosacral plexus, hepatic enlargement, distension, and temic use.124 The latency of response can be as long as 2 to
pain.112,113 Corticosteroids are also helpful in the management 3 weeks, and patients should continue their opioid therapy.
of bone pain as well as in the treatment of bowel obstruc- Because of this delayed onset of analgesia, patients who are
tion.114,115 Corticosteroids may also be useful in the manage- actively dying are not candidates. Side effects associated with
ment of nausea and vomiting. In the older adult, corticosteroids strontium use include thrombocytopenia and leucopenia.
should not be used concurrently with NSAIDs due to the Samarium lexidronam (Quadramet) is a radiopharmaceuti-
potential increased risk of bleeding. cal that has an afnity for bone, and concentrates in areas
Local anesthetics have been shown to relieve pain when of bone turnover with hydroxyapatite, which is useful for
administered orally, topically, intravenously, and intraspinally. metastatic bone pain. Patients should also be instructed that a
Mexiletine has been useful when anticonvulsants have failed.116 transitory pain are can occur, and analgesics may need to be
Topical local anesthetic gels and topical Lidoderm patches titrated.
have been useful in the management of postherpetic neuropa-
thy117 and other neuropathic pain syndromes, including peri- Invasive Approaches
pheral neuropathy, postthoracotomy pain, stump neuroma,
complex regional pain syndrome, radiculopathy, and post- Anesthetic and neurosurgical approaches are indicated when
mastectomy pain.118 Lidoderm patches 5% should be applied conservative measures using opioids and adjuvant analgesics
12 hours on/12 hours off, within a 24-hour period. They have have failed to provide adequate analgesia, or when the patient
an excellent safety prole; systemically active serum levels of is experiencing intolerable side effects. The use of these
lidocaine do not occur, and patients can cut the patches to t approaches is not contraindicated in the older adult. The
small areas. In many older patients, the patches may provide clearest indication for these approaches is intolerable CNS
an opioid-sparing effectthe patient may use less opioid toxicity. These procedures include regional analgesia (spinal,
analgesia within a 24-hour period. IV lidocaine boluses at intraventricular, and intrapleural opioids), sympathetic block-
doses of 1 to 5 mg/kg, maximum 500 mg, administered over 1 ade and neurolytic procedures (celiac plexus block, lumbar
hour, followed by a continuous infusion of 1 to 2 mg/kg/hr has sympathetic block, cervicothoracic [stellate] ganglion block),
been reported to reduce intractable neuropathic pain in the or pathway ablation procedure (chemical or surgical rhizo-
palliative care and hospice setting.119 tomy, or cordotomy). At the end of life, these approaches may
Bisphosphonates inhibit osteoclastmediated bone resorp- be useful in some older patients who have intractable pain that
tion and alleviate pain from metastatic bone disease and mul- cannot be managed with systemic treatment.
tiple myeloma.120,121 Analgesic effects can occur in 2 to 4 weeks,
and, for this reason, might not be suitable for patients at Nonpharmacological Approaches:
the end of life. Pamidronate disodium and zoledronic acid are Complementary Therapies
used in patients with metastatic lesions from breast and prostate
cancer. Pamidronate sodium has been shown to reduce patho- Physical and psychological interventions can be used as an
logical fractures in patients with breast cancer.122 Patients adjunct with drugs and surgical approaches to manage pain in
should be monitored with serum calcium levels because the older adult. These approaches carry few side effects and,
hypocalcemia can occur. when possible, should be tried along with other approaches. In
Calcitonin may be given subcutaneously or intranasally to selecting an approach in the dying patient, factors that should
relieve pain associated with osteoporotic fractures.123 Usual be considered include physical and psychological burden to
doses are 100 to 200 IU/day and are usually well tolerated. At the patient, efcacy, and practicality. If the patient has weeks to
the end of life, this is probably not a practical or helpful live, these strategies may allow for a reduction in systemic opi-
intervention. oids and diminish adverse effects.
Cognitive-behavioral interventions include relaxation, settings, delirium is a common symptom in the elderly med-
guided imagery, distraction, and music therapy. The major ically ill and cancer patient. The presence of delirium con-
advantages of these techniques are that they are easy to learn, tributes signicantly to increased morbidity and mortality.
safe, and readily accepted by patients. Cognitive and behav- Estimates of the prevalence of delirium range from 25% to
ioral interventions are helpful to reduce emotional distress, 40% in cancer patients at some point during their disease, and
improve coping, and offer the patient and family a sense of in the terminal phases of disease, the incidence increases to
control. Other physical interventions such as reexology and 85%.89,136138 In elderly hospitalized patients, delirium preva-
massage therapy have been shown to relieve pain and produce lence ranges from 10% to 40%, and up to 80% at the end of
relaxation.125,126 life. One of the major problems in the treatment of delirium in
the elderly patient is lack of assessment by hospital staff, espe-
The Cognitively Impaired Elderly: Problems cially if the patient is quiet and noncommunicative.
in Assessment and Fear of Treating Pain and
Other Symptoms Predisposing and Etiological Factors. The etiology of delirium
in the medically compromised and dying elderly patient is
Cognitively impaired nursing home residents present a special often multifactorial and may be nonspecic. In an elderly
barrier to pain assessment and management.127131 Residents of patient, delirium is often a presenting feature of an acute phys-
nursing homes exhibit very high rates of cognitive impair- ical illness or exacerbation of a chronic one, or of intoxication
ment.132 Most studies of nursing home residents reveal that with even therapeutic doses of commonly used drugs.139 A
cognitively impaired nursing home residents are prescribed number of factors appear to make the elderly more susceptible
and administered signicantly less analgesic medication, both to the development of delirium (Table 3511).
in number and in dosage of pain drugs, than their more cog- Delirium can be due to the direct effects of the disease on
nitively intact peers.132,133 the CNS, metabolic reasons including organ failure, elec-
Assessment of pain in cognitively impaired elderly at the trolyte imbalance, infection, hematological disorders, nutri-
end of life remains a special challenge. Mild to moderate cog- tional deciencies, paraneoplastic disorders, hypoxemia,
nitive impairments seem to be associated with a decrease in chemotherapeutic agents, immunotherapy, vascular disorders,
propensity to report pain.132 In severely cognitively impaired hypothermia, hyperthermia, uncontrolled pain, sensory dep-
individuals, assessment is often difcult because these individ- rivation, sleep deprivation, medications, alcohol or drug with-
uals frequently cannot verbalize their reports of pain. Ferrell drawal, diarrhea, constipation, or urinary retention. A variety
and colleagues134 found in their evaluation of 217 elderly of drugs can produce delirium in the medically ill or elderly
patients with signicant cognitive impairment that 83% could patient (Table 3512). In the palliative care setting, multiple
complete at least one pain scale, with the McGill Present Pain medications are generally required to control symptoms at the
Intensity Scale having the highest completion rate, and 32% end of life. In patients with advanced cancer, prospective data
were able to complete all of the scales presented. suggest a prevalence of delirium in 28% to 42% on admission
The best way to assess pain is to ask the individual. In the to a palliative care unit.140 Given the projected increase in the
cognitively impaired elderly, it is difcult to assess pain. The numbers of elderly patients, health care providers will
ability of caregivers, either family or staff, to assess pain in this encounter the need for management of delirium in the elderly
population is crucial. In one study of caregiver perceptions of more frequently.
nonverbal patients with cerebral palsy, more than 80% of the Other risk factors for the development of delirium include
caregivers used aspects of crying and moaning to alert them to advanced age, cancer, preexisitng cognitive impairment, hip
a pain event.135 In another study evaluating a measurement fractures, and severe illness.141143 In cancer patients, risk fac-
tool for discomfort in noncommunicative patients with tors that have been identied include advanced age, cognitive
advanced Alzheimers disease, indicators of pain included impairment, low albumin level, bone metastases, and the pres-
noisy breathing, negative vocalizations, facial expression (con- ence of hematological malignancy. In one study that deter-
tent, sad, or frightened), frown, and body language (relaxed, mined risk factors for delirium in oncology patients, specic
tense, or dgeting).127 etiological factors in the elderly were identied and include
There is some evidence that cognitively impaired elderly reduced cholinergic reserves of the brain, high prevalence of
individuals facial expressions of pain depend on the cause of cognitive impairment and comorbid disease, visual and hear-
the underlying cognitive disorder, including hemispheric dys- ing loss, and impaired metabolism of drugs.144,145
function and type of dementia; however, facial expressions The diagnosis of delirium in an elderly patient carries with
and body language can be very useful indicators of pain. it serious risks. Delirium produces distress for patients, fami-
lies, and health care providers. Depending on the severity of
Delirium at the End of Life symptoms (uctuating cognitive changes, hallucinations, agi-
tation, or emotional lability), patients often require one-to-
Prevalence. Delirium is a frequently occurring consequence of one observation, chemical, and, rarely, physical restraints. Falls
advanced cancer and is characterized by disturbances in arousal, and pressure ulcers are associated with the hyperactive and
perception, cognition, and psychomotor behavior.136,137 In all hypoactive subtypes.146
Table 3511
Factors Predisposing the Elderly to Delirium
Factor Comments
Age-related changes in the brain Atrophy of gray and white matter
Senile plaques in hippocampus, amygdala,
middle cerebral cortical layers
Cell loss in frontal lobes, amygdala, putamen,
thalamus, locus ceruleus
Alzheimers disease, cerebrovascular disease
Brain damage
Reduced regulation and resistance to stress Visual, hearing loss
Sensory changes Prolonged immobility, Foley catheters
Infection
Intravenous lines Pulmonary and urinary tract infections
Reduced ability to metabolize and eliminate
drugs
Impaired pharmacokinetics Vitamin deciency as a result of prolonged illness
Malnutrition Folate deciency may directly cause delirium
Multiple comorbid diseases Cancer and cardiovascular, pulmonary, renal, and
hepatic disease
Endocrine disorders, including hyperthyroidism
and hypothyroidism
Fluid and electrolyte abnormalities
Reduced thirst Hypovolemia
Reduction of protein-binding of drugs Enhanced effect of opioids, diuretics
Polypharmacy Use of sedatives, hypnotics, major tranquilizers
Sources: Adapted from Lipowski (1989), reference 139, and Inouye et al. (1996), reference 141.
Given the projected increase in the numbers of elderly Foley catheter, malnutrition, dehydration, alcohol, and med-
patients, health care providers will encounter management of ications, including neuroleptics, opioids, and anticholinergic
delirium in the elderly more frequently. To reduce the risk of drugs. Lastly, delirium in an elderly patient is often a precur-
polypharmacologically induced delirium, it is prudent to add sor to death and should be viewed as a grave prognostic
one medication at a time, evaluating its response, before sign.147
adding another medication. Alcohol withdrawal may be the cause of delirium in the el-
Delirium in the elderly patient is often undertreated for derly. In one study, organic mental syndromes were diagnosed
several reasons, including lack of assessment tools, inadequate in more than 40% of elderly alcoholics admitted for alcohol
knowledge of early signs of confusion, and inadequate time abuse, and delirium was found in about 10% of these.148 Ill-
spent with the patient to determine cognitive functionall ness, malnutrition, concurrent use of a hepatotoxic drug, or
factors that lead to underdiagnosis. In addition, behavioral one that is metabolized by the liver may result in increased
manifestations of delirium may include a variety of symptoms sensitivity of the elderly to alcohol. Alcohol, combined with
that may be interpreted as depression, or dementia. other medications, especially centrally acting medications, can
A multifactorial model of delirium in the elderly, with produce delirium in the elderly.
baseline predisposing factors and the addition of various The diagnosis of delirium in an elderly patient carries with
insults, has been established by Inouye.141 The factors that it serious risks. An agitated delirious patient may climb out of
have been identied to be contributory to baseline vulnerabil- bed; pull out Foley catheters, IV lines, and sutures; and injure
ity in the elderly include visual impairment, cognitive impair- staff in an attempt to protect himself from perceived threat.
ment, severe illness, and an elevated blood urea nitrogen/ Mental status questionnaires are relatively easy to administer,
creatinine ratio of 18 or greater. Other factors that have been and an examination should be performed on all patients with
identified in the elderly include advanced age, depression, mental status changes. The Mini-Mental State Exam, a 10-item
electrolyte imbalance, poor functional status, immobility, test, is easy to administer to an elderly patient.149
Table 3512
Drugs Commonly Causing Delirium in the Elderly
Classication Example
Antidepressants Amitriptyline, doxepin

Antihistamines Chlorpheniramine, diphenhydramine,
hydroxyzine, promethazine
Diabetic agents Chlorpropamide
Cardiac Digoxin, dipyridamole
Antihypertensives Propranolol, clonidine
Sedatives Barbiturates, chlordiazepoxide,
diazepam, urazepam, meprobamate
Opioids Meperidine, pentazocine,
propoxyphene
Nonsteroidal antiinammatory agents Indomethacin, phenylbutazone
Anticholinergics Atropine, scopolamine
Antiemetics Trimethobenzamide, phenothiazine
Antispasmodics Dilomine, hyoscyamine,
propantheline, belladonna alkaloids
Antineoplastics Methotrexate, mitomycin,
procarbazine, Ara-C, carmustine,
uorouracil, interferon, Interleukin-2,
L-asparaginase, prednisone
Corticosteroids Prednisone, dexamethasone
H2-receptor antagonists Cimetidine
Lithium
Acetaminophen
Salicylates Aspirin
Anticonvulsant agents Carbamazepine, diphenylhydantoin,
phenobarbital, sodium valproate
Antiparkinsonian Amantadine, levodopa
agents
Alcohol
Source: Adapted from Lipowski (1989), reference 139.
Delirium and Dementia uctuates during the day and tends to increase at night, is typ-
ical of a delirium. Delirium, in general, is a transient disorder
Delirium may often be superimposed upon dementia in the that seldom lasts for more than a month, while dementia is a
elderly patient. In clinical practice, it is important to distin- clinical state that lasts for months or years.139 Dementia
guish whether the delirious patient has an underlying demen- implies impairment in short- or long-term memory associ-
tia. When an elderly demented patient becomes delirious, it ated with impaired thinking and judgment, with other distur-
should be assumed that an organic precipitating factor bances of higher cortical function, or with personality
metabolic, drug-induced, acute illnessis the cause, and the change.150 The presence and severity of cognitive decits and
patient should be evaluated for the etiology and treated. The attentional disturbances should be further established by a
distinction is not always apparent. Both delirium and demen- comprehensive mental status examination.
tia feature global impairment in cognition. Obtaining a careful
history from family members or caregivers to learn about the Treatment of Delirium
onset of symptoms is probably the most important factor in
making the distinction. In general, acute onset of cognitive Treatment of delirium includes an identication of the underly-
and attentional decits and abnormalities, whose severity ing cause, correction of the precipitating factors, and symptom
management of the delirium. In the very ill or dying patient, Interventions that may be helpful include restoration of
however, the etiology may be multifactorial, and the cause is uid and electrolyte balance, environmental changes, and sup-
often irreversible. portive techniques such as elimination of unnecessary stimuli,
If delirium is occurring in the dying elderly patient and the provision of a safe environment, and measures that reduce
goal of care has been identied as the promotion of comfort anxiety. In many cases, the etiology of delirium may be phar-
and relief of suffering, diagnostic evaluations (imaging and macological, especially in the elderly patient. All nonessential
laboratory studies) would not prove benecial. and CNS-depressant drugs should be stopped. Figure 352
High-risk factors present
Obtain history.
Perform physical exam.
Perform mental status exam.
Consider diagnostic workup within the context of goals of care.
Evaluate:
Impact on patient/family caregiver.
Level of risk/danger.
Overall goals of care.
Need to transfer to inpatient facility.
Delirium diagnosed and consistent

with DSM IV criteria.
Hyperactive/agitated delirium Hypoactive delirium Mixed delirium
Investigate possible etiologies.

Implement measures to reverse.
Pharmacological management Nonpharmacological management
Hypoactive delirium: Hyperactive/mixed delirium: Decrease external stimulation.

Haloperidol PO IV 0.5/6 mg Haloperidol IV / PO Frequently reorient.
q412 h PRN. Start with lowest 210 mg q412 h PRN. Do Create a safe environment.
doses. Do not exceed 30 mg not exceed 30 mg in 24 hours Provide one-to-one nursing care.
in 24 hours without a without a psychiatry consult.
psychiatry consult.
Add benztropine .5 to 1 mg IV (PO

t.i.d.) for extra pyramidal symptoms
Haloperidol if Use olanzapine Add lorazepam Switch to chlorpromazine

sedated. 2.55 mg PO if EPS. .5 mg2 mg IV q4 h 2550 mg IV q412 h if
for sedation increased sedation is needed.
Adjust dosage for optimal control Adjust dosage for optimal

of symptoms and continue for up control of symptoms.
to 7 days until etiology is reversed.
Taper off slowly.
Switch to olanzapine if regimen
is not tolerated or if EPS are an
issue.
Figure 352. Delirium management in the geriatric patient at the end of life. Source: Adapted
from Memorial Sloan-Kettering Cancer Center algorithm for pharmacologic management of
delirium (August 14, 2001).
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36o] Anne Hughes
Poor, Homeless, and Underserved Populations

Last year at this time I was locked up in a psych ward because Id tried to kill myself and today Im
ghting for my life. Isnt that ironic?Matt, a 58-year-old man recently diagnosed with stage IV
squamous cell cancer of the hypopharynx, who just completed chemotherapy and radiation therapy
after surgery, and refused hospice referral
Key Points Poverty is inextricably linked to increased morbidity, prema-

Poor people are at risk for a bad death. ture mortality, and limited access to both preventive health
People whose lives have been lled with physical and emotional care and ongoing medical care. Beyond the medical outcomes
deprivation may be suspicious of attempts to engage them in of poverty, the individual and community costs are substantial
shared decision-making to limit therapy, regardless of its likely and often invisible. People who are poor constitute a vulnera-
benets or burdens. ble population, a term used in community health to describe
Some poor people have comorbidities (e.g., mental illness, substance social groups at greater risk for adverse health outcomes. The
abuse, and other chronic diseases) and other social characteristics root causes of this vulnerability typically are low socioeco-
that have marginalized them in society. nomic status and a lack of access to resources.1 The Institute of
Poor peoples interactions with the health care system are frequently Medicines report, which evaluated racial and ethnic dispari-
marked by rejection, shame, and lack of continuity of care. ties in health care, failed to address the role of poverty in dis-
parities.2 However, the role of poverty in contributing to
inequalities, independent of race and ethnicity, is difcult to
decipher because class and race are often closely intertwined.3,4
Some believe poverty may be most responsible for disparities
in health care.4
While much has been written about end-of-life care in the
United States,58 with some recent exceptions, little has been
said about those in our society who live at its margins, such as
the urban poor.912a To be poor and to have a progressive, life-
threatening illness presents more challenges than either one
of these conditions alone. As Taipale elegantly notes, Poverty
means the opportunities and choices most basic to human
development are denied [p. 54].13 Consider the following
questions: What type of death would a person hope for who
doesnt have a home or lives in a room without a phone or a
toilet or a kitchen? What are the meanings of life-threatening
illness and death when premature death is an all-too-common
part of life? What matters at the end of life if most of your life
has been spent trying to survive day to day? All of these ques-
tions, in part, introduce us to the worlds of the poor who are
confronting a life-threatening illness. Physical, psychological,
and spiritual deprivation isnt all that poor people contend
withdeprivation also harms the moral self and the ability
both to act and to live autonomously.14
The purpose of this chapter is to examine the characteris-
tics of the poor as an underserved population that place them
661
at particular risk when palliative care is needed. In particular,

this chapter looks at a subset of the poor who are homeless or Table 361
States Whose Poverty Rates Exceed National Average
marginally housed, and how this affects both access to and
quality of care at the end of life. The experience of being poor People in Poverty
is not a single experience, as poor persons are as diverse a pop- State (%)
ulation as the nonpoor. The discussion in this chapter focuses
Alabama 14.6
on inner-city or urban poor, who are often marginally housed
or homeless. Case studies are used to illustrate the concepts Arizona 13.3
discussed and to demonstrate the need for the more research Arkansas 18
to guide practice. The cases described are composite and California 12.8
reective of the authors practice in a metropolitan-area pub- District of Columbia 16.8
lic health system that is greatly impacted by HIV/AIDS and by Kentucky 13.1
homelessness. As a result, these cases are not generalizable to
Louisiana 17
all the poor or even to all the homeless. Being poor is only one
of several characteristics that affect health status and limit Mississippi 17.6
access to resources. Persons with many vulnerabilities (e.g., Montana 13.7
being poor AND a member of a minority community, elderly, New Mexico 17.8
or having other medical problems) are at the greatest risk for New York 14
adverse outcomes at the end of life.15 North Carolina 13.1
Oklahoma 14.7
o] South Carolina 13.5
Epidemiology of Poverty in the United States Tennessee 14.2
Texas 15.3
More than 34 million Americans are poor. The poverty line West Virginia 16
established by the federal government is based on annual
income. In 2002, a single adult was considered poor if his or Source: Proctor & Dalaker (2003), reference 16.
her income was less than $9,359, and a family of four (with 3
children under 18 years) was considered poor if their annual
income was less than $18,307.16 Thirty-four million Ameri- o]
cans represent just over 12% of the entire population of the Denition and Prevalence of Homelessness
United States. Table 361 lists states whose poverty level
exceeds the national average. Many poverty experts, however, Homelessness is dened in the Stewart McKinney Homeless
believe the federal definition of poverty underestimates the Act as a condition under which persons lack xed, regular
true prevalence of poverty in the United States. For example, and adequate night-time residence or reside in temporary
the poverty line (annual income) does not capture cost-of- housing such as shelters and welfare hotels.17 Calculating the
living differences across the country or out-of-pocket med- number of Americans homeless or marginally housed is
ical costs. extremely difcult. Most cross-sectional studies fail to capture
The faces of the poor in the United States disproportion- persons transiently homeless, the hidden homeless staying
ately include persons of color, children, and female-headed with family members, those living in cars or encampments,
families.16 African Americans have the highest rates of poverty and others living in single-room occupancy hotels (SROs),
in the United States (24.1%), followed by Hispanics (21.8%), sometimes known as welfare hotels. Additionally many of the
Asian/Pacic Islanders (10.3%), and whites (8.0%) according poor and, in particular, the homeless, avoid contact with social
to the U.S. Census Bureau Report for 2002.16 Children have and health services.
greater rates of poverty than young and middle-aged adults According to the National Coalition for the Homeless,
and the elderly. Almost 50% of the families living in poverty in every night between 400,000 to 800,000 Americans are home-
the United States are headed by a woman.16 less; 3.5 million Americans experience homelessness in a given
While poverty is not conned to urban areas, as evident in year.18 Persons who are homeless are not members of a homog-
Table 361, 78% of the poor live in or near the more populous enous group. Some are street people and chronically homeless,
metropolitan areas, and 40% of all the poor live in inner (or while others are homeless because of a nancial crisis that put
central) cities.16 Most of the poor have access to some type of them out of stable housing. Street people may be more reluc-
housing or shelter, even if the basic accommodations (tele- tant to accept services and may have much higher rates of con-
phone, cooking and refrigeration, heat, water, private toilet, current substance abuse and mental illness, that is, the
and bathing facilities) are inadequate. However, for a small so-called dual diagnosed.19 Homeless persons frequently are
subset, housing is marginal or unavailable. This subset is the also persons of color, veterans, victims of domestic violence,
focus of the following discussion. the mentally ill, and substance abusers.20 While the rates of
Poor, Homeless and Underserved Populations 663
mental illness and substance abuse are higher in the homeless the poor may also be related to limited access to standard med-
than persons who are stably housed, assuming that all the ical care.23,24 Persons who are poor, on average, have shorter life
poor, or, for that matter, all homeless suffer from these prob- expectancies than those whose incomes are higher.25 Men in
lems leads only to stereotypes. Domestic violence, mental ill- Harlem have life expectancy rates comparable to those living
ness, and substance abuse are not conned to the poor; hence, in developing countries, such as Bangladesh.4
poverty does not cause these problems, although it may exac-
erbate them.
o]
Poverty, Life-Threatening Illness, and Quality of Life
o]
Health Problems Associated with Poor people endure a heavier burden of cancer according to a
Homelessness and Poverty report from the American Cancer Society.4 The key ndings of
the impact of poverty on cancer care, irrespective of race and
A number of health problems are associated with homeless- ethnicity, are listed in Table 363. In general, poor people
ness. Many of these problems are related to environmental fac- encounter substantial barriers to obtaining quality cancer
tors such as exposure to weather conditions, poorly ventilated care, experience more pain and suffering, and are more fatalis-
spaces, unsafe hotels and street conditions, and high-crime tic about cancer.
neighborhoods, where the poor tend to live.21 These health Understanding the role race and ethnicity play in the end-
problems (Table 362) include malnutrition, lack of access to of-life experience of the urban poor is complex. Nevertheless,
shelter and bathing facilities, problems related to drug and alco- three studies examined the impact of economic resources on
hol use, chronic mental illness, and violence-related injuries. quality of life for persons with life-threatening illnesses.26-28
One fth of the homeless have a major psychiatric illness.20 Being poor (dened as having an annual income of less than
About one in three homeless persons abuse drugs and alco- $20,000) negatively affected the quality of life reported by
hol.20 Drugs and alcohol are sometimes used to self-medicate mostly white (85%) men newly diagnosed with prostate can-
distressing psychiatric symptoms (e.g., anxiety, depression). cer, though low income was not related to quality of life over
A recent meta-analysis of the inuence of income inequal- time. However, the lack of health insurance did predict worse
ity and population health concluded that although the direct quality of life for men with prostate cancer over time but not
effects of poverty on population health were not evident, the at baseline.27 In a qualitative study of heterosexual couples in
individual effects of poverty on health status are irrefutable.22 which only one partner was HIV-positive, the investigators
Consider the case of coronary artery disease (CAD): the link were surprised to learn the benets of having AIDS in pro-
between onset of CAD and low socioeconomic status (SES) viding poor persons with access to subsidized housing, food,
has been established and is believed to be related to lifestyle and other social services.26 Indeed, these researchers noted
factors, such as dietary habits, smoking, and physical activity.23 that, given policy changes in welfare programs, having an
Recent research suggests that poor cardiac outcomes among AIDS diagnosis was a commodity that brought with it benets
Table 362
Table 363
Health Problems Associated with Homelessness
Poverty and Cancer: Findings from an American Cancer
Causes Manifestations Society Report
Malnutrition Dental problems, tuberculosis, Poor people lacking access to quality health care are more
wasting likely to die of cancer than nonpoor.
Lack of shelter and access Skin infections, lice, cellulitis, Poor people experience greater cancer-related pain and
to bathing facilities podiatric problems, suffering.
hypothermia, tuberculosis Poor people facing signicant barriers to getting health
Drug and alcohol use Overdose, seizures, delirium, insurance often do not seek necessary care if they are
sexually transmitted unable to pay for it.
infections (such as HIV, Poor people and their families make extraordinary
hepatitis B, hepatitis C), sacrices to obtain and pay for care.
trauma, falls, cirrhosis, heroin Cancer education and outreach efforts are insensitive and
nephropathy, esophageal irrelevant to the lives of many poor people.
varices
Fatalism about cancer is common among the poor and
Chronic mental illness Paranoid ideation, antisocial often prevents them from accessing care.
behaviors, psychosis, suicide
Violence-related injuries Assaults, homicides, rape Source: Adapted from Freeman (2004), reference 4.
that the poor were otherwise ineligible to receive. In other o]

words, for poor people, having AIDS improved their quality of Clinical Presentations of Advanced
life. In a cross-sectional study of 212 adults with heart failure Disease in the Poor
who were predominantly female (68%) and black (53%), qual-
ity of life was not related to physiological measures of heart Persons who are poor frequently present with advanced dis-
function, but was correlated with greater income, social sup- ease. In addition to the late-stage disease presentation, many
port, and positive health beliefs.28 Economic resources were have signicant comorbidities that affect both the palliation of
associated with improved quality of life. symptoms and the course and treatment of underlying ill-
In his recently published book, Dancing with Broken Bones: nesses. These clinical management issues usually occur within
Portraits of Death and Dying Among Inner City Poor, Moller the context of complex psychosocial situations, as the follow-
poignantly recounts the stories of poor patients followed by an ing case illustrates:
oncology clinic in a midwest city. His insights about the suf-
fering of the urban poor are exquisite: . . . the dying poor are
the quintessential violators of the American dream; they live in 9=
the shame of poverty and with the unpleasantness of dying case study
[p. 10].10 Since much of a persons worth in American society Lana, a Patient with AIDS
is connected with social status indicators such as occupation
Lana, a 43-year-old white woman, has been living in a shelter
and income, the poor represent those who havent made it.
since her boyfriend died 18 months ago. She was diagnosed
Being poor becomes a matter of personal failure rather than a
with AIDS 4 years ago after a hospitalization for Pneumocystis
social problem.29 From Mollers longitudinal qualitative study
carinii pneumonia. Lana was shocked and ashamed by this
of poor inner-city patients, their families, and their health care
diagnosis because she didnt suspect she was HIV positive.
providers, the researcher drew a number of conclusions that
Since that time, she has had repeated hospitalizations, includ-
are listed in Table 364. His work can perhaps be summed up
ing several for delirium secondary to crack and alcohol use.
by saying that the indignities of being poor in America are
Currently Lana is taking four antiretroviral medications
only intensied when that person is also dying. Unlike persons
through a directly observed therapy program (DOT)
who are not poor, dying is not always feared in the same way,
arranged by her case manager. In addition to AIDS and alco-
as it may represent freedom from the misery of living.
hol and crack abuse, her medical problems include seizure
disorder, depression, liver disease, hepatitis B and C infec-
tions, and chronic pain from a motor vehicle accident, which
fractured her cervical spine and required a metal plate to sta-
Table 364 bilize the fracture. Lana has lost touch with her family; she is
Insights About the Dying Poor one of 8 children who grew up in the Midwest. Her father was
an alcoholic; both of her parents died years ago. Lana had a
Poverty inicts substantial harm throughout life.
daughter when she was 15 years old but hasnt seen her
Poverty exacerbates indignity and suffering throughout daughter in 14 years, when Lana was put in jail for drug use.
dying. She doesnt know where her daughter is living. None of her
Patients/families are often mistrustful and angry about the family members know about Lanas lifestyle or about her
care received. AIDS diagnosis, and she is adamant that they not be told.
Patients, at the same time, are often grateful for the care o]
received.
Comorbidities, especially those related to drug use, complicate
Spirituality plays an important role in providing strength
symptom management and other medical management.30 As
and resilience when dying.
Lanas case study points out, there were several competing
Social isolation increases suffering.
factors that may inuence her providers willingness to aggres-
Hidden and sometimes unexpected sources of support can sively manage her pain. Persons known to be chemically depend-
emerge from family and community. ent are often denied treatment for pain because of providers
The emergency room is the front door to health care. concerns of aberrant or drug-hoarding behaviors. Will Lana
The organization of medical care is frequently fragmented take the medication as ordered? Is she likely to sell her opioids
and lacks continuity. for cocaine? Are her medications safe in the shelter? Does she
Funerals are important rituals, and their cost creates have a place to keep them or are others likely to steal them?
enormous stress for survivors. Some providers even question the use of opioids for any non-
malignant pain syndrome. Who will prescribe opioid medica-
Source: Dancing with Broken Bones: Portraits of Death and Dying Among tions? If Lana is seen in a teaching clinic, will she need to
Innercity Poor by David Wendell Moller, 2000 by Oxford University Press,
Inc. Used by permission of Oxford University Press, Inc. negotiate the need for analgesia with each new doctor that
rotates through? Does she have money or insurance to pay for
the medications? Is there a pharmacy near the shelter that car- necessary several-times-a-day dosing.32 Race, class, and hous-
ries them? According to a study by Morrison and colleagues,31 ing status cannot be used as surrogate predictors of who
pharmacies in predominantly nonwhite neighborhoods in abuses drugs and alcohol or who will adhere or not adhere to
New York City were less likely to carry opioids for pain man- treatment demands.
agement than were pharmacies in neighborhood serving pre-
dominantly white communities. Most shelters are located in
inner cities, not in middle class or afuent communities, where o]
more whites live. Poor social conditions, criminal activity, and Psychosocial Factors Inuencing Palliative Care
the threat of violence are signicant barriers to effective pain Available to the Poor and Homeless
management for persons with life-threatening illnesses.12 Lana
is receiving DOT antiretroviral therapy, and, therefore, she is Health care professionals committed to supporting patients
being followed carefully. Perhaps this support system could be right to a good death may be challenged when working with
enlisted to oversee her pain management and her overall safety the poor and the homeless. The good death is described as:
and well-being. (1) free from avoidable distress and suffering, (2) in accord with
Access to treatment is a signicant factor that inuences the patient and familys wishes, and (3) consistent with clini-
symptom management for this population. For example, if an cal, cultural, and ethical standards.5 Bad deaths, in contrast,
antiemetic prescribed to relieve the chronic nausea experi- are accompanied by neglect, violence, or unwanted and sense-
enced by a poor person with pancreatic cancer is not covered less medical interventions.5 Persons who are poor or homeless
on the Medicaid formulary, or the person is not eligible for any are at risk for bad deaths. Many persons have had episodic
drug-assistance program, the range of medications used to contact with the health care system during acute illnesses or
manage the nausea will be severely limited. Additionally, use of life-threatening trauma and may wind up receiving life-saving
high-tech methods to control symptoms are probably not an therapies such as mechanical ventilation, vasopressors, dialy-
option for the person who lives in a tent encampment. Most sis, and other therapies. All too often, the client does not have
poor persons are institutionalized to manage uncontrolled an advance directive or a surrogate decision-maker to articu-
symptoms and terminal care that cannot be managed suf- late his or her wishes. Furthermore, in the absence of a com-
ciently on the street or in the shelter.10 petent patient or family directing otherwise, the technological
The management of symptoms associated with progressive imperative of hospitals and physicians in training may see sav-
illness is further complicated by end-organ diseases, such as ing a life at any cost of greater value.5 Nevertheless, what con-
liver or renal disease, that may alter the pharmacokinetics of stitutes a good or bad death is a question that can only be
medications used to palliate symptoms. Clinically signicant answered by the individual person and cannot be predicted
drugdrug and drugnutrient interactions are common with based on group membership or economic resources.33
antiretrovirals that Lana is taking. Determining whether a Basic survival needs (food, shelter, clothing, protection) are
patient is experiencing an adverse drug reaction is not easy of primary concern to the poor, often of greater and more
when the person has comorbidities, has rapidly progressive pressing importance than the existential crisis of facing ones
disease, is malnourished, or may be continuing to use alcohol own mortality. Seeing others die prematurely, often under vio-
or other substances. lent or disturbing circumstances, may be an all-too-common
Comorbidities also affect the health care providers ability experience for this population.34 Table 365 lists challenges to
to realistically estimate prognosis and the nature of symptoms providing a good death in this population. The lack of resources,
or problems that might occur down the road. Charting the both economic and human, limit the palliative options avail-
dying trajectory for the chronic progressive illness may be able to the person who is poor. In the movie The Wizard of Oz,
conceivable, but superimposing the acute illnesses and injuries Dorothys refrain, Theres no place like home, theres no place
that the very poor live with and manage creates jagged peaks like home, speaks of an almost faraway magical experience
and valleys in a downward course. How quickly the life- that many who are poor and dying cannot even imagine.
threatening illness will progress becomes a prognostication Housing is so essential to health that, for those of us who do
puzzle; some persons living on the street truly seem to have not worry about having a roof over our heads at night, its impor-
had nine lives. In addition to HIV disease, Lanas liver disease tance is taken for granted. Many persons who are poor and
may limit her survival. If she resumes using drugs and alcohol, dont have enough to get by are often trying to gure out how
her addiction could also hasten her death. to nd a place to stay. And for those with a place, the concerns
There is another issue to consider with Lana adherence may be keeping the utilities (lights, heat, water) on and having
to treatment. Despite the prevalence of substance abuse among enough money for other needs.
the poor, lack of attention to self-care activities cannot be In addition to basic survival needs of the poor that inu-
assumed in all drug users. Some homeless persons who use ence their end-of-life experiences are their relationships with
drugs manage complex HIV antiretroviral regimens that the health care professionals who take care of them. Health
require scrupulous attention to when to eat, which other med- care professionals can and often do stigmatize patients for
ications may or may not be taken at the same time, and the their appearance or lack of hygiene. Sometimes the presence of
Table 365
Psychosocial Challenges in Providing Palliative Care to the Poor
Patient is homeless or has unstable or unsafe housing, with inadequate basic facilities (phone,
private bathroom, refrigerator, and cooking facilities).
Getting to appointments is difcult without reliable transportation.
Lack of money limits options and often contributes to chaotic lives.
Patient has fragile or nonexistent support system (e.g., no primary caregiver, caregiver who is
unable to provide necessary care, caregiver also sick, no surrogate or proxy decision-maker,
estranged from family, history of family violence or abuse).
Many poor people who have encountered rejection or shame when accessing health care ser-
vices avoid contact and are slow to trust even well-meaning health care professionals.
Poor people who obtain health care usually do so without benet of a long-term relationship
with a primary care provider or a case manager familiar with their history can help them
navigate a complex care-delivery system.
Most health care or specialized palliative care services are geographically remote from where
poor people live. Some service providers curtail services to the poorest communities because
of concerns about staff safety.
Behavioral problems (e.g., drug hoarding, selling prescriptions, hostility, psychiatric illness,
substance abuse) can affect patient relationships with health care providers.
It is difcult to assess the decision-making capacity and goals of patients who are cognitively
impaired, intoxicated, or brain injured.
Many patients, including the poor, are asked to make treatment decisions without sufcient
information about the implications of the decisions, and in the context of a patientprovider
relationship that has enormous power inbalances.
There is little evidence available on which to base therapeutic interventions because this
population is not included in clinical trials.
Source: Adapted from Moller (2004), reference 10.
body odor leads to rejection. Historical events and power dif- Living every day with chaos, stress, and the indignity of
ferential in patient-provider roles can also affect such relation- inner-city poverty creates, for many, a level of tolerance
ships. For example, the African-American experience with the that most of us would nd intolerable. In this regard, it
medical care system includes the Tuskegee experiment and is not unusual for patients to accept care with which
other instances of abuse. Many African Americans feel betrayed they are unhappy because they have accepted a lifetime
by the predominantly white medical care system and believe of economic and social indignities about which they
their trust in the system has been violated.35 are unhappy. In a strange sense, many patients often
Many of the poor receive care in public health care systems felt their suffering in the face of disease was just, one
or indigent care settings that often serve as teaching hospitals, more bad thing to endure. Thus despite many varia-
and where continuity of care is an illusion.10 Additionally, dis- tions in form and meaning, disease and dying are often
cussions about limiting therapy or do-not-resuscitate (DNR) borne with a sense of equanimity that ows from con-
decisions may be regarded as an attempt by the dominant cul- stant adjustments required by a life lived in poverty
ture to withhold possibly life-sustaining therapy. Some indi- [p. 1].10
viduals and communities fear being treated like a guinea pig
and refuse to participate in clinical trials when offered. The
sometimes conicted relationships that poor people have with 9=
health care providers and systems related to care at the end of case study
life is again powerfully captured by Moller: Matt, a Patient with Squamous Cell Cancer
. . . Perhaps even more poignant than the anger and Matt, a 58-year-old African-American man, grew up in Geor-
disappointment of dissatised patients is the absence of gia. He was drafted after high school. When he nished his
resentment on the part of those who have every reason military service in Vietnam, he settled in a West Coast city far
to be upset with the care they receive. It is fair to sug- away from his family. He lost touch with his family after years
gest that, for some, this lack of assertiveness and anger of serious alcohol and drug abuse, despite periods of sobri-
has its roots deep within the experience of poverty. ety. Matts other medical problems include hypertension,
posttraumatic stress disorder, and an 80-pack-year history of the standard for end-of-life care, are infrequently used by
smoking. Matt had been sober for 5 years until he experi- African Americans.6
enced ashbacks of Vietnam following the invasion of Iraq, at
which time he tried to hang himself. He was hospitalized in a
psych unit and responded to antidepressants and group ther- o]
apy. Six months later, after persistent sore throat, difculty Where and How Homeless People Die
swallowing, and weight loss, he went to a drop-in clinic at the
food bank. He was sent to the emergency room at a teaching Limited data are available regarding the socioeconomic factors,
hospital and was eventually diagnosed with stage IV squa- places of death, and immediate causes of death of the home-
mous cell cancer of the hypopharynx. Matt had a radical neck less.3638 Most poor people, like those who are not poor, die in
dissection, chemotherapy, and radiation therapy. He agreed institutions. For those who are homeless, dying on the street or
to placement in a nursing home while he was receiving in jail is another fact of life.39
chemotherapy and radiation therapy (RT). Matt returned to In 2003, 169 homeless persons died in San Francisco.38 The
the oncology clinic for follow-up for an enlarged neck mass, prole of the homeless who died were: male (85%), average
and the white oncology fellow told him that he suspected age of 42 years, and disproportionally more whites and African
tumor recurrence and wondered if Matt had thought about Americans than live in San Francisco.36 Drug and alcohol were
hospice. Matt became angry and expressed doubt that this directly associated with 60% of these deaths. Chronic alcohol
doctor knew what he was doing, because the ENT doctor abuse and acute alcohol intoxication were also listed as
(also white) had told him the mass may be inammation causes of death in the homeless in Georgia.40 Hypothermia
caused by the RT. He was clear that he was not ready to die was also noted as a cause of death among the homeless in
and insisted that he was not afraid. Matt felt like he had got- Chicago and in Georgia.40,41 Accidental deaths due to res, falls,
ten his life back and wasnt ready to cash it in yetI dont and pedestrianmotor vehicle accidents, plus drowning and
want anything to do with hospice. His supports included a violent deaths related to homicide and suicide were also
local church that ministers to the urban poor, his AA reported in the homeless.40
sponsor, and a case manager who has followed him since his Researchers in Boston studied the use of health care by the
hospitalization. homeless for the year prior to their deaths.37 Chart reviews
o] were completed for all patients reported to the state death reg-
istry who had participated in a health care program for the
Matts story raises a number of complex issues inuenced by homeless. The actual circumstances of the death were not
culture, historical discrimination, and the process of end-of- studied; however, the causes of death as listed on death certi-
life decision-making. For some African Americans, according cates were noted. For the 5-year study period, 558 deaths were
to Crawley, death is seen as a struggle to overcome and, for reported. Unlike the previous results, which looked at coro-
others, a welcomed friend that precedes going home to heaven.35 ners cases, 81% of the deaths were attributed to natural causes
Matt was not ready to go home; while his church and religion (such as HIV-/AIDS-related conditions, heart disease, cancer,
were sources of support, he regarded death as a struggle to be and other unspecied causes), and only 19% were due to exter-
overcome. Matt received care in a public hospital from an nal causes such as homicide, suicide, motor vehicle injuries,
oncology fellow whose different race, education, and occupa- and drug overdoses.37 Similar to the homeless who died in San
tion may have contributed to different world views. When to Francisco, most were male (86%), between 25 and 44 years of
introduce the option of hospice is difcult. For some patients, age (56%), white (59%), and had a history of substance abuse
poor and nonpoor alike, hospice is equated with giving up, (76% used alcohol). In addition, 28% were mentally ill.37
with not having hope. Would Matts response had been differ-
ent if the fellow had conferred with the ENT physician about
his prognosis, and Matt was receiving one message about his o]
progress? What did Matt understand the goals of treatments to Palliative Care Models for Working with the Poor
be when he agreed to chemo and RT after surgery? Not sur-
prisingly, Matt held onto the contradictory assessment of the Several hospitals serving the urban poor have developed pal-
ENT physician, who was more hopeful that the mass may be a liative care programs to address their specic needs.4244 The
complication of radiation therapy. Who would not hold onto longest-running program (since 1986) is a nurse-directed pro-
hope in a situation of advanced disease? Matt is in the curious gram that serves critically ill patients who are unlikely to sur-
position of having been ambivalent about living. One year vive hospitalization in a trauma level I hospital in the Midwest.
earlier, he had attempted to commit suicide, and now his goal This supportive care team has documented decreased use of
was to live, surely not to die gently. How does a person who health care resources and family satisfaction.42 Another pro-
has been receiving aggressive treatment to control disease gram, an interdisciplinary palliative care service based in a
shift to an approach whose goal is a peaceful and dignied public hospital, follows patients and their families in the com-
death? Many of these questions are not unique to the poor munity and serves as a bridge when the patient is transferred
who are dying. Finally, hospice services, while recognized as to a nursing home or hospice for continuing care.43 The third
program was an interdisciplinary palliative care inpatient con- to say, as with persons who are not poor, wide variations in
sult service that served a racially and ethnically diverse com- abilities, resources, and relationships with health care profes-
munity (with many non-Englishspeaking patients). Despite sionals exist.
achieving improved symptom management, increased patient/ Obviously, stable housing is critical to providing palliative
family participation in decision-making, and documentation care. Researchers noted the benets of supportive housing to
of barriers to optimum end-of-life care, this program was minority elders in East Harlem, including better psychological
eliminated because it was not able to generate sufcient rev- outcomes and increased use of informal supports.46 In a qual-
enue to sustain itself.44 itative study of nurses who care for persons who are disen-
franchised, the researcher used the metaphor of a wall to
describe the separation that nurses believed their clients
o] experienced from society.47 The disenfranchised in this study
Strategies for Working with the Poor and Homeless included the poor, mentally ill, immigrants, persons with sub-
Who Happen to Be Dying stance abuse, and/or those with stigmatizing life-threatening ill-
ness. The nurses described three key themes in how they
Working with the very poor can be challenging. Generations engaged their disenfranchised clients: (1) making a human con-
of internalized hopelessness, poor self-awareness, differing nection with the client, (2) creating a community connection
perceptions of time (everything seeming to take much longer), for their disconnected clients, and (3) making self-care possible.
and difculties navigating the many bureaucracies necessary In summary, developing therapeutic relationships with the
to obtain services surely frustrate patients and caregivers poor and homeless requires (1) expecting the persons trust to
alike.45 Some have suggested modifying expectations to these be earned over time (sometimes a long time) and not be taken
realities and recognizing small successes as strategies to for granted; (2) respecting the persons humanity, no matter
address these factors.45 how they look, what they say, and what feelings in us they
On the other hand, for many persons who live on the street, evoke; (3) appreciating the persons unique story as inuenc-
survival skills are keenly developed. Knowing when a food ing his/her response to illness and death; and, nally, (4) rec-
bank opens, where to get clothing, when shelter-bed waiting ognizing and addressing maladaptive behaviors.29,39,48 Table
lines begin to form, or how to get benet checks without an 366 includes a list of helpful suggestions to reach a difcult-
address requires remarkable ingenuity and discipline. Needless to-engage client.
Table 366
Helpful Suggestions When Engaging a Difcult-to-Engage Client
Address anyone over 40 years of age by the title of Mr. or Ms. Ask permission to be on a rst-
name basis.
Do not hestitate to shake hands.
Be prepared to meet people who are more intelligent, more perceptive, and more wounded
than you expect.
Be tolerant. How would you react if you were in that situation?
Dont make promises you cant keep.
Dont take it personally.
Taking time out helps prevent burnout.
Get to know the community.
If you feel you have to save the human race, do it one person at a time.
Providing material assistance (e.g., clean socks, food, hygiene kits) opens people up.
Usually the most difcult clients are those most in need. Throw the word noncompliant out of
your vocabulary.
Make eye contact. If the person does not like eye contact or becomes agitated, avoid using it.
Keep in mind that people who live intense lives may not particularly like unasked-for physical
contact.
Dont be afraid to ask stupid questions; patients answers are better than your assumptions.
Adjust your expectations and accept small victories with satisfaction.
Source: Patchell (1997), reference 48.

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37o] Deborah Witt Sherman
Patients with Acquired

Immunodeciency Syndrome
I thank God that there are medications to treat AIDS, but there are serious side effects and they can
make you feel quite sick. Yet, I want to live and I will do everything possible to stay alive. Some
people say AIDS is now a chronic disease. There are other medications to treat my symptoms, and
there is my belief in God that lifts my spirit. My family helps me care for my kids, but it is hard on
everyone. We all need support because we are all suffering one way or another.A patient
Key Points In 20 years, acquired immunodeciency syndrome (AIDS) has

With HIV/AIDS, the severity, complexity, and unpredictability of escalated from a series of outbreaks in scattered communities
the illness trajectory have blurred the distinction between curative in the United States and Europe to a global health crisis.1
and palliative care. Although the emerging biomedical paradigm of highly active
The focus of AIDS care must be on improving quality of life by antiretroviral therapy (HAART) has signicantly reduced the
providing care for the management of pain and other symptoms, mortality from human immunodeciency virus (HIV) in the
while addressing the emotional, social, and spiritual needs of developed world and has transformed AIDS into a manage-
patients and their families throughout the illness trajectory. able chronic illness, the reality worldwide is that people are not
With up-to-date knowledge regarding HIV disease, including living with AIDS, but, rather, dying from AIDS due to a lack
changes in epidemiology, diagnostic testing, treatment options, and of access to medications and appropriate health care.2 Even in
available resources, nurses can offer effective and compassionate developed countries, AIDS remains the leading cause of serious
care to patients and families at all stages of HIV disease. illness and death for young adults, and at this point in time,
there is a false dichotomy created between disease-specic, cur-
ative therapies and symptom-specic palliative therapies.3 AIDS
has stimulated the need to evaluate clinical practice when cura-
tive and palliative care interface and raises some interesting and
interconnected issues about the care of individuals with life-
threatening, progressive illnesses.4 Both the public and health
professionals have been troubled by the reality of overtreatment
and undertreatment of pain and symptoms in individuals with
life-threatening illnesses, particularly at the end of life.5 Such
concern extends to the care of patients with HIV and the result-
ant illness of AIDS because no cure has yet been found. The
focus of care must, therefore, be on improving quality of life by
providing palliative care for the management of pain and other
physical symptoms while addressing the emotional, social, and
spiritual needs of patients and their families throughout the ill-
ness trajectory. Even though current therapies have increased
the life expectancy of people with HIV/AIDS, the chance of their
experiencing symptoms related not only to the disease but to the
effects of therapies also increases. Furthermore, palliative mea-
sures can be benecial in ensuring tolerance of and adherence to
difcult pharmacological regimens.6
Although little attention has been given in the past to pal-
liative care as a component of AIDS care, it is now realized that
the palliation of pain, symptoms, and suffering must occur
throughout the course of a life-threatening disease, not just in
671
the nal stages near the end of life. Because patients are sur- uids, particularly through sexual transmission and blood
viving longer in the latter stages of illness, an integrated model products.9
must be developed to provide comprehensive care for patients Origins of HIV can be traced through serum studies to 1959,
with advanced AIDS and their families.3 This chapter provides when crossover mechanisms between humans and primates via
an overview and update of the comprehensive care related to animal bites or scratches in Africa led to HIV transmission. In
HIV/AIDS and addresses the palliative care needs of individu- 1981, the virus was identied and named lymphadenopathy-
als and families living with and dying from this illness. With associated virus (LAV). By 1984, the term had been changed to
this information, nurses and other health care professionals human T-lymphocytic virus type III (HTLV-III), and in 1986
will gain the knowledge to provide effective and compassion- renamed the human immunodeciency virus type 1 (HIV-1).
ate care, recognizing the need for both curative and aggressive HIV-1 accounts for nearly all the cases reported in the United
care as well as supportive and palliative therapies to maximize States, while a second strain, HIV-2, accounts for nearly all the
the quality of life of patients and their family caregivers. cases reported in West Africa. There have only been 17 cases of
HIV-2 reported in the United States, the majority being immi-
grants from Africa.
o] Globally, AIDS is characterized as a volatile, unstable, and
Overview and Update: Incidence, Historical dynamic epidemic, which has spread to new countries around
Background, Epidemiology, and Pathogenesis the world. It has become increasingly complex due to the viruses
ability to mutate and crosses all socioeconomic, cultural, po-
Incidence of HIV/AIDS litical, and geographic borders.10 To date, scientic progress
has been made in combating the infection: (1) the virus has been
HIV/AIDS is a worldwide epidemic affecting more than 40 identied; (2) a blood-screening program has been imple-
million people. An estimated 5 million acquired HIV in 2003, mented; (3) vaccines are being tested; (4) biological and behav-
with an estimated 3 million people dying from AIDS.7 The ioral cofactors have been identied related to infection and
Centers for Disease Control and Prevention (CDC) in 2004 disease progression; (5) prophylactic treatments are available
reported that through December 2002, there were more than to prevent opportunistic infections; (6) newly developed HIV
877,275 reported cases in the United States since the beginning RNA quantitative assays, which measure viral load (VL), have
of the epidemic. 718,002 cases were males, 159,271 cases females, become available to guide the treatment of the disease; and (7)
and 9,300 cases estimated in children under age 13.7 In the United the latest advances in treatment involve the use of combina-
States, the estimated number of deaths of persons with AIDS tion antiretroviral therapies.10 However, epidemiological evi-
is 501,669, including 496,354 adults and adolescents, and 5,315 dence heightens concern regarding changes in the population
children under age 15.7 HIV is the leading cause of death of all affected and the morbidity and mortality still associated with
Americans between the ages of 25 and 44 years, with the high- the disease.
est incidence and prevalence now among African Americans,
women, and heterosexuals.7 Given that there are no approved HIV Epidemiology
vaccines against HIV/AIDS or cures for the disease, AIDS
remains a life-threatening and progressive illness that marks the Epidemiological studies conrm that HIV-1 is transmitted
nal stage of a chronic viral illness, identied by the occurrence through semen, cervical and vaginal secretions, breast milk, con-
of particular opportunistic infections, cancers, and neurological taminated drug equipment, transfusions and blood products,
manifestations.8 tissue transplants, perinatal exposure, and occupational expo-
sure in health care settings.10 Although HIV diagnosis has
Historical Background of HIV/AIDS remained stable in the United States from 1999 to 2002, the rate
of HIV infection has dramatically increased among African
In the early 1980s, cases were reported of previously healthy Americans (75.6 per 100,000), compared with Hispanics (29.3
homosexual men who were diagnosed with Pneumocystis carinii per 100,000) and Caucasians (8.0 per 100,000). Diagnosis rates
pneumonia and an extremely rare tumor known as Kaposis remain higher among males (27.7 per 100,000) than females
sarcoma (KS). The number of cases doubled every 6 months, (10.7 per 100,000). Furthermore, the rate of HIV diagnosis rose
with further occurrence of unusual fungal, viral, and parasitic 5% per year among men who have sex with men of all races, and
infections, and it was realized that the immune systems of remains stable among heterosexuals and IV substance abusers.11
these individuals were being compromised. Over time, the CDC In the HAART era, there has been a decrease in the incidence of
learned that a complex of diseases producing immunocompe- KS and cervical cancer, although the incidence of non-Hodgkins
tence was experienced outside the homosexual community, lymphoma has not decreased. In contrast, in the HAART period,
among heterosexual partners, intravenous (IV) substance users, the incidence of lung cancer, Hodgkins disease, anorectal can-
persons with hemophilia, individuals receiving infected blood cer, melanoma, and head and neck cancers has increased.11
products, and children born to women with the disease. These Until a vaccine is available, sex education, the use of con-
epidemiological changes alerted health professionals to the doms, and drug-abuse treatment, including the provision of
existence of an infectious agent transmitted via infected body clean needles, have been shown to limit the horizontal spread
Patients with Acquired Immunodeciency Syndrome 673
of HIV/AIDS to other adults. However, personal, social, political, In 1993, the CDC reclassied HIV disease according to the
and cultural barriers in almost all countries and governments CD4 T lymphocyte count and clinical conditions associated
prevent the widespread implementation of these interventions. with HIV infection. The classication of HIV disease is as fol-
In underdeveloped countries, such as those in sub-Saharan lows:10,13 Primary or acute infection occurs when the virus enters
Africa, where a large proportion of the adult population is the body and replicates in large numbers in the blood. This
infected with HIV/AIDS, and there is a high burden of suffer- leads to an initial decrease in the number of T cells. Viral load
ing and death, it is believed that prevention alone is inade- climbs during the rst 2 weeks of the infection. Within 5 to
quate. Treatment must be available to preserve the human 30 days of infection, the individual experiences ulike symp-
infrastructure of society, and it is thought that this will increase toms characteristic of a viremia such as fever, sore throat, skin
voluntary testing, break the silence, and offer a powerful life- rash, lymphadenopathy, and myalgia. Other manifestations of
or-death incentive for people to be tested.12 primary HIV infection include fatigue, splenomegaly, anorexia,
nausea and vomiting, meningitis, retro-orbital pain, neuro-
HIV Pathogenesis and Classication pathy, and mucocutaneous ulceration.17 The production of
HIV antibodies results in seroconversion, which generally
Like all viruses, the HIV virus survives by reproducing itself in occurs within 6 to 12 weeks of the initial infection. The amount
a host cell, usurping the genetic machinery of that cell, and of virus present after the initial viremia and the immune
eventually destroying the cell.13 The HIV is a retrovirus whose response is called the viral set point.
life cycle consists of (1) attachment of the virus to the cell, Clinical latency refers to the chronic, clinically asympto-
which is affected by cofactors that inuence the viruss ability matic state in which there is a decreased VL and resolution of
to enter the host cell; (2) uncoating of the virus; (3) reverse symptoms of the primary infection. It was previously thought
transcription by an enzyme called reverse transcriptase, which that in this period, the virus lay dormant in the host cells for a
converts two strands of viral RNA to DNA; (4) integration of period of 5 to 7 years. However, recent advances in the under-
newly synthesized proviral DNA into the cell nucleus, assisted standing of the pathogenesis of the virus reveal that there is
by the viral enzyme integrase, which becomes the template for continuous viral replication in the lymph nodes. Because more
new viral components; (5) transcription of proviral DNA into than 10 billion copies of the virus can be made every day dur-
messenger RNA; (6) movement of messenger RNA outside the ing this period, early medical intervention with combination
cell nucleus, where it is translated into viral proteins and antiretroviral therapy is recommended.18
enzymes; and (7) assembly and release of mature virus parti- Early symptomatic stage occurs after years of infection and
cles out of the host cell.14 is apparent by conditions indicative primarily of defects in
The host cell therefore produces viral proteins instead of cell-mediated immunity. Early symptomatic infection occurs
the cells normal regulatory proteins, resulting in the eventual when CD4 counts fall below 500 cells/mm3 and the HIV VL
destruction of the host cell. Given that the virus has an afnity copy count increases above 10,000/mL up to 100,000/mL, which
for CD4 molecules, any cells that have the CD4 molecule on their indicates a moderate risk of HIV progression and a median time
surface, such as T lymphocytes and macrophages, become major to death of 6.8 years. There are frequently mucosal clues, rang-
viral targets. Recently, research has identied that chemokines ing from oral candidiasis and hairy leukoplakia to ulcerative
and chemokine receptors play important roles in HIV patho- lesions. Gynecological infections are the most common reasons
genesis by inhibiting HIV infection. Because CD4 cells are the women have a medical examination. There are also dermato-
master coordinators of the immune response, chronic destruc- logical manifestations, which include bacterial, fungal, viral,
tion of these cells severely compromises individuals immune neoplastic, and other conditions such exacerbation of psoria-
status, leaving them susceptible to opportunistic infections. sis, severe pruritus, or the development of recurrent pruritic
Macrophages are also directly targeted by the virus and may papules.17
serve as reservoirs for the virus for months after initial infec- Late symptomatic stage begins when the CD4 count drops
tion, as well as contributing to HIV-related dementias and below 200 cells/mm3 and the VL increases above 100,000/mL.
other neurological syndromes.14 HIV and AIDS are not syn- This CD4 level is recognized by the CDC as the case denition
onymous terms but, rather, refer to the natural history or pro- for AIDS. Severe opportunistic infections or cancers charac-
gression of the infection, ranging from asymptomatic infection terize this stage and result in multiple severe symptoms. In
to life-threatening illness characterized by opportunistic infec- addition to such illnesses as KS, Pneumocystis carinii pneumo-
tions and cancers. This continuum of illness is associated with nia, HIV encephalopathy, and HIV wasting, diseases such as
a decrease in CD4 cell count and a rise in HIV-RNA VL.15 In pulmonary tuberculosis, recurrent bacterial infections, and
monitoring disease progression, it should be noted, however, invasive cervical cancer have been added to the list of AIDS-
that although low CD4 cell counts are generally correlated indicative illnesses.7 Advanced HIV disease stage occurs when
with high VLs, some patients with low CD4 counts have low the CD4 cell count drops below 50 cells/mm3 and the immune
VLs and vice versa. The most reliable current measurement of system is so impaired that death is likely within 1 year. Common
HIV activity, therefore, is the VL, and the more consistent sur- conditions are central nervous system (CNS) non-Hodgkins
rogate marker is the percentage of lymphocytes that are CD4 lymphoma, KS, cytomegalovirus (CMV) retinitis, or Mycobac-
cells, rather than the absolute CD4 cell count.16 terium avium complex (MAC).17 Unfortunately, persons with
advanced HIV disease diagnosed with AIDS increasingly rep- and ethnically diverse populations with comorbidities such as
resent persons whose diagnosis was too late for them to bene- hepatitis B and C, end-organ failure, and various malignancies.
t from treatment, persons who either did not seek or had no Although thousands of individuals have suffered and died
access to care, or persons for whom treatment failed.7 In the from AIDS each year, the palliative care needs of HIV/AIDS
late stages of the disease, most individuals have health prob- patients have been largely neglected by organizations involved in
lems such as pneumonia, oral candidiasis, depression, demen- medical care.26 This has occurred because the division between
tia, skin problems, anxiety, incontinence, fatigue, isolation, curativeaggressive care and supportivepalliative care is less
bed dependency, wasting syndrome, and signicant pain.18 well dened and more variable than in other life-threatening ill-
Research regarding AIDS patients experiencing advanced dis- nesses such as cancer.18 With HIV/AIDS, the severity, complex-
ease conrms the multitude of patient symptoms and factors ity, and unpredictability of the illness trajectory have blurred
that contribute to mortality. In a study of 83 hospitalized AIDS the distinction between curative and palliative care.27 Other
patients, factors contributing to higher mortality include the challenges associated with HIV/AIDS are the societal stigmatiza-
type of opportunistic infections, serum albumin level, total tion of the disease and, therefore, the greater emotional, social,
lymphocyte count, weight, CD4 count, and neurological man- and spiritual needs of those experiencing the illness, as well as
ifestations.19 Of 363 patients with AIDS referred to community their family and professional caregivers who experience their
palliative care services, the most severe problems throughout own grief and bereavement processes.
care were patient and family anxiety and symptom control.20 Resources aimed at prevention, health promotion and main-
In the last month of life, a retrospective study of 50 men who tenance, and end-of-life care must be available through health
died from AIDS indicated that the most distressing symptoms care policies and legislation.28 Not only the treatment of chronic
included pain, dyspnea, diarrhea, confusion, dementia, dif- debilitating conditions, but also the treatment of superimposed
culty swallowing and eating, and loss of vision. Dehydration, acute opportunistic infections and related symptoms is neces-
malnutrition, and peripheral neuropathy were also important sary to maintain quality of life. For example, IV therapy and
problems.21 blood transfusions, as well as health prevention measures such
as ongoing IV therapies to prevent blindness from CMV retini-
tis, must be available to patients with AIDS to maintain their
o] quality of life.
Palliative Care as a Natural Evolution Palliative care is therefore a natural evolution in AIDS care.
in HIV/AIDS Care Core issues of comfort and function, fundamental to palliative
care, must be addressed throughout the course of the illness,
From the earliest stages of HIV disease, symptom control and may be concurrent with restorative or curative therapies for
becomes an important goal of medical and nursing care to persons with AIDS.23 The management decisions for patients
maintain the patients quality of life. Palliative care for patients with advanced AIDS will revolve around the ratio between
with HIV/AIDS should therefore be viewed not as an approach benets and burdens of the various diagnostic and treatment
to care only in the advanced stage of the illness, but as an modalities, and the patients expectations and goals, as well as
aspect of care that begins in the early stage of illness and con- anticipated problems.29 In the face of advanced HIV disease,
tinues as the disease progresses.22 health care providers and patients must determine the balance
With the occurrence of opportunistic infections, specic between aggressive and supportive efforts, particularly when
cancers, and neurological manifestations, AIDS involves mul- increasing debility, wasting, and deteriorating cognitive func-
tiple symptoms not only from the disease processes but also tion are evident.30 At this point, the complex needs of patients
from the side effects of medications and other therapies. Patients and families with HIV/AIDS require the coordinated care of
with AIDS present with complex care issues because they an interdisciplinary palliative care team, involving physicians,
experience bouts of severe illness and debilitation alternating advanced practice nurses, staff nurses, social workers, dieti-
with periods of symptom stabilization.23 In one model of care, tians, physiotherapists, and clergy.6,31 Given that in palliative
AIDS palliation begins when active treatment ends. Although care the unit of care is the patient and family, the palliative care
this model limits service overlap and is economical, it creates team offers support not only for patients to live as fully as pos-
not only the ethical issue of when to shift from a curative to a sible until death, but also for the family to help them to cope
palliative focus, but also promotes discontinuity of care and during the patients illness and in their own bereavement.32
possible discrimination. In contrast, a second model of AIDS Palliative care core precepts of respect for patient goals, prefer-
care recognizes that AIDS treatment is primarily palliative, ences, and choices, comprehensive caring, and acknowledgment
directed toward minimizing symptoms and maximizing the of caregivers concerns33 support the holistic and comprehensive
quality of life, and necessitates the use of antiretroviral drugs, approach to care needed by individuals and families with
treatment of infections and neoplasms, and provision of high HIV/AIDS. The components of high-quality HIV/AIDS pal-
levels of support to promote the patients quality of life over liative care, as identied by health care providers, include com-
many years of the illness.24 Selwyn and Rivard25 emphasize that petent, skilled practitioners; condential, nondiscriminatory,
although AIDS is no longer a uniformly fatal disease, it is an culturally sensitive care; exible and responsive care; collabo-
important cause of mortality, particularly for young adults rative and coordinated care; and fair access to care.34
Although the hospice and palliative care movement devel- Criteria for Palliative Care
oped as a community response to those who were dying, pri-
marily of cancer, the advent of the AIDS epidemic made it Grothe and Brody35 suggest that four criteria be considered
necessary for hospices to begin admitting patients with AIDS. regarding the admission of AIDS patients to hospice: functional
This meant applying the old model of cancer care to patients ability, statistical prognosis, CD4 count and VL, and history of
with a new infectious, progressive, and terminal disease.35 Unlike opportunistic infections. These criteria give a better understand-
the course of cancer, which is relatively predictable once the ing of the patients prognosis and needs. The complex needs of
disease progresses beyond cure, AIDS patients experience a patients with advanced AIDS also indicate the need for an inter-
series of life-threatening opportunistic infections. It is not until disciplinary approach to care offered by hospice/palliative care.
wasting becomes apparent that the course of AIDS achieves the Bloom and Flannery39 encourage the continual review of hos-
predictability of cancer.35 Furthermore, while the underlying pice policies in accordance with the changes in the disease and
goal of AIDS care remains one of palliation, short-term aggres- encourage change in the community to provide an effective con-
sive therapies are still needed to treat opportunistic infections.36 tinuum of care. Indeed, developing different models of care such
Also, unlike cancer palliation, AIDS palliation deals with a fatal as enhanced home care, hospice care, day care, or partnerships
infectious disease of primarily younger people, which requires with community hospitals or agencies and conducting cost-
ongoing infection control and the management of symptoms.37 benet analysis will be important in meeting the health care
needs of patients with AIDS and their families in the future.18
Barriers to Palliative Care Important advances are currently being made in the eld of
palliative medicine and nursing, involving an active set of behav-
The neglect of the palliative care needs of patients with HIV iors that continue throughout the caregiving process to manage
disease also relates to certain barriers to care, such as reim- the pain and suffering of individuals with HIV/AIDS. Health
bursement issues. Specically, public and private third-party professionals have the responsibility to be knowledgeable
payers have reimbursed end-of-life care only when physicians about the various treatment options and resources available for
have veried a life expectancy of less than 6 months to live.38 pain and symptom management. They must know about phar-
Given the unpredictability of the illness trajectory, many patients macological agents actions, side effects, and interactions, as
with AIDS have been denied access to hospice care. Currently, well as alternative routes of medication administration. And
these policies are under review, and the 6-month limitation is they must be able to inform patients of their options for care
being extended so that patients with AIDS will be eligible for documenting their preferences, wishes, and choices; performing
comprehensive care, with control of pain and other symptoms a complete history and physical assessment; and collaborating
along with psychological and spiritual support offered by hos- with other members of the interdisciplinary team to develop
pice/palliative care. and implement a comprehensive plan of care.31
As a second barrier to hospice/palliative care, patients with
AIDS have been denied, until recently, access because of the
need to continue antiretroviral therapies and other medications o]
to prevent opportunistic infections. Given that the estimated Health Promotion and Maintenance in Promoting
cost of treatment for AIDS patients in hospices could amount to the Quality of Life of Persons with HIV/AIDS
twice the cost of treating patients with cancer, particularly when
the costs of medications are included, cost remains an impor- As palliative care becomes an increasingly important compo-
tant issue for hospices.32 Financing of such therapies for patients nent of AIDS care from diagnosis to death,28 and given the def-
with AIDS is now being addressed by hospice/palliative care inition of palliative care as the comprehensive management
organizations. of the physical, psychological, social, spiritual, and existential
The third barrier to palliative care is the patients themselves, needs of patients with incurable progressive illness,33 palliative
many of whom are young, clinging to the hope of a cure for care must involve ongoing prevention, health promotion, and
AIDS and unwilling to accept hospice care. However, the current health maintenance to promote the patients quality of life
emphasis on beginning palliative care at the time of diagnosis of throughout the illness trajectory. With HIV/AIDS, health pro-
a life-threatening illness may shift the perception of palliative motion and maintenance involves promoting behaviors that
care as only end-of-life care, and help promote palliative care as will prevent or decrease the occurrence of opportunistic infec-
an aggressive approach to care throughout the course of the ill- tions and AIDS-indicator diseases, promoting prophylactic and
ness to ensure their quality of life. Indeed, media and Internet therapeutic treatment of AIDS-indicator conditions, and pre-
coverage of government and private initiatives to improve the venting behaviors that promote disease expression.5
care of the seriously and terminally ill in the United States is With no current prospect for cure, the health management
informing patients, families, and nurses of the philosophy and of patients with HIV/AIDS is directed toward prolonging sur-
precepts of palliative care, the availability of palliative care for vival and maintaining quality of life.40 Nurses generally refer to
life-dening illnesses, and the rights of patients to receive excel- quality of life as the impact of sickness and health care on an
lent end-of-life care, as well as the obligations of health profes- ill persons daily activities and sense of well-being.41 Further-
sionals to provide such care across health care settings. more, quality of life varies with disease progression from HIV
to AIDS. To understand quality of life means to understand infections, disease progression, psychological distress, and
the patients perceptions of his or her ability to control the fatigue. In patients with AIDS, common nutritional problems
physical, emotional, social, cognitive, and spiritual aspects of are weight loss, vitamin and mineral deciencies, loss of mus-
the illness.42 Quality of life is therefore associated with health cle mass, and loss or redistribution of fat mass. The redistrib-
maintenance for individuals with HIV/AIDS, particularly as it ution of fat is characterized by increased abdominal girth, loss
relates to functioning in activities of daily living, social func- of fat from the face, and a buffalo hump on the back of the
tioning, and physical and emotional symptoms.43 In a study neck, which may be due to the administration of protease
regarding the functional quality of life of 142 men and women inhibitors.47 Patients with HIV/AIDS often have reduced food
with AIDS, Vosvick and colleagues44 concluded that maladap- or caloric intake, malabsorption, and altered metabolism.
tive coping strategies were associated with lower levels of Reduced food or caloric intake is frequently due to diseases of
energy and social functioning and that severe pain interfered the mouth and oropharynx, such as oral candidiasis, anular
with daily living tasks and was associated with lower levels of cheilitis, gingivitis, herpes simplex, and hairy leukoplakia.48
functional quality of life (physical functioning, energy/fatigue, Incidence of diseases of the gastrointestinal (GI) tract that can
social functioning, and role functioning). Therefore, health cause malabsorption, such as CMV, MAC, cryptosporidiosis,
promotion interventions should be aimed at developing adap- and KS increases for individuals with CD4 counts of 50 or less,
tive coping strategies and improving pain management. and may adversely affect their nutritional status.49 Metabolic
Health promotion and maintenance for patients with HIV/ alterations may be due to HIV infection or secondary infec-
AIDS must acknowledge patients perceived health care needs. tions, as well as abnormalities in carbohydrate, fat, and protein
Based on a study of 386 HIV-infected persons, it was deter- metabolism.47 The Task Force on Nutrition in AIDS (1989)
mined that the health care challenges perceived by patients recommended that the goals of sound nutritional manage-
with HIV/AIDS across hospital, outpatient, home, and long- ment should include: (1) provision of adequate nutrients;
term care settings included decreased endurance, physical (2) preservation of lean body mass; and (3) minimization of
mobility, and sensory perception, as well as nancial issues symptoms associated with malabsorption. Hussein50 believes
specically lack of income and resources to cover living and that a good diet is one of the simplest ways to delay HIV pro-
health care expenses.45 Furthermore, Kemppainen46 reported, gression and will bolster immune system function and energy
based on a sample of 162 hospitalized men and women with levels and help patients live longer and more productive lives.
AIDS, that the strongest predictor of decreased quality of life A diet with a variety of foods from the ve basic food groups,
was depression, which accounted for 23% of the variance, with including 55% of calories from carbohydrates, 15% to 20% of
symptoms accounting for 9.75% and female gender account- calories from proteins, and 30% of calories from fats, is impor-
ing for an additional 8%. In addition, active involvement in the tant in supporting immune function.51 It is recommended to
process of nursing care contributed 13.4% to the variance in have two or three servings daily from the protein and dairy
quality of life. These results indicate the health care challenges groups, seven to 12 servings from the starch and grain group,
and physical, emotional, and interactional needs of patients two servings of fruits and vegetables rich in vitamin C, as well
with AIDS and, that in addition to managing pain and other as three servings of other fruits and vegetables.10
symptoms, a comprehensive and compassionate approach to care
is necessary as the illness progresses. Furthermore, enhancing Micronutrients
immunocompetence is critical at all stages of illness, as well as
treating the symptoms brought on by the disease or related to Research has indicated that HIV-infected individuals have lower
prophylactic or treatment therapies. Palliation of physical, emo- levels than noninfected individuals of magnesium, total
tional, and spiritual symptoms, particularly as experienced in carotenes, total choline, and vitamins A and B6, yet higher levels
the late symptomatic and advanced stages of HIV disease, is of niacin.52 A linkage has been reported between vitamin A (beta
considered the nal stage of a health-and-disease-prevention carotene) deciency and elevated disease progression and mor-
approach and will be discussed later in this chapter.10 tality.53 Correcting both vitamin A and B6 deciencies has been
Through all stages of HIV disease, health can be promoted hypothesized to restore cell-mediated immunity, and vitamin-
and maintained through diet, micronutrients, exercise, reduc- supplement trials are underway. Current research supports the
tion of stress and negative emotions, symptom surveillance, increase in dietary intake of n-3 polyunsaturated fatty acids, argi-
and the use of prophylactic therapies to prevent opportunistic nine, and RNA to increase body weight and stave off wasting due
infections or AIDS-related complications. to malabsorption. Increase in concentrations of amino acids such
as arginine has also been found to preserve lean muscle mass.52
Diet
Exercise
A health-promoting diet is essential for optimal functioning
of the immune system. Deciencies in calorie and protein A consistent outcome of the effects of exercise on immune func-
intake impair cell-mediated immunity, phagocytic function, tion is the increase in natural killer-cell activity, though variable
and antibody response. Therefore, an alteration in nutrition is results are reported on the effects of exercise on neutrophil,
associated with impaired immune system function, secondary macrophage, and T and B cell function and proliferation.54 In
a review of exercise studies, LaPerriere and colleagues55 reported Therefore, health promotion may involve nancial planning,
a trend in CD4 cell count elevation in all but one study, with identication of nancial resources available through the com-
the greatest effect from aerobic exercise and weight training. munity, and public assistance offered through Medicaid.
The CDC56 recommend a physical exercise program of 30 to 45 It must also be recognized that additional physical and emo-
minutes four or more times a week as a health-promoting tional stress is associated with the use of recreational drugs
activity to increase lung capacity, endurance, energy, and ex- such as alcohol, chemical stimulants, tobacco, and marijuana
ibility, and to improve circulation. because these agents have an immunosuppressant effect and
Massage has also been linked to natural killer-cell activity and may interfere with health-promoting behaviors.64 The use of
overall immune regulation as reported in a research study of 29 such substances may also have a negative effect on interpersonal
HIV-infected men who received daily massages for 1 month.57 relationships and are associated with a relapse to unsafe sexual
Patient reports of less anxiety and greater relaxation related to practices.65 Interventions for health promotion include encour-
exercise and massage are regarded by both patients and practi- aging patients to participate in self-health groups and harm-
tioners as important laboratory markers.52 reduction programs to deal with substance-abuse problems.
Stress and Emotions Symptom Surveillance

Stress and negative emotions have also been associated with Throughout the course of their illness, individuals with HIV
immunosuppression and vulnerability to disease. In a study of disease require primary care services to identify early signs of
96 HIV-infected homosexual men without symptoms or anti- opportunistic infections and to minimize related symptoms
retroviral medication use, Leserman and colleagues58 reported and complications. This includes a complete health history,
that higher cumulative average stressful life events, higher anger physical examination, and laboratory data including determi-
scores, lower cumulative average social support, and depressive nation of immunological and viral status.
symptoms were all predictive of a faster progression to both the
CDC AIDS classication and a clinical AIDS condition. Stress of
Health History. In the care of patients with HIV/AIDS, the
living with HIV/AIDS is related to the uncertainty regarding
health history should include the following16:
illness progression and prognosis, stigmatization and discrimi-
nation, and nancial concerns as disabilities increase with History of present illness, including a review of
advancing disease. Persons with AIDS frequently cite the avoid- those factors that led to HIV testing
ance of stress as a way of maintaining a sense of well-being.59 Past medical history, particularly those conditions
The use of exercise and massage and other relaxation techniques, that may be exacerbated by HIV disease or its treat-
such as imagery, meditation, and yoga, are reported as valuable ments, such as diabetes mellitus, hypertriglyc-
stress-management techniques.60 Cognitive-behavioral interven- eridemia, or chronic or active hepatitis B infection
tions have also been shown to improve certain aspects of quality Childhood illnesses and vaccinations for preventing
of life of women with AIDS (n = 330), specically in terms of common infections such as polio, DPT, or measles
cognitive functioning, health distress, and overall health percep- Medication history, including the patients knowl-
tions. However, no changes were observed in energy/fatigue, edge of the types of medications, side effects,
pain, or role or social functioning.61 adverse reactions, drug interactions, and adminis-
Health promotion also involves health beliefs and coping tration recommendations
strategies that support well-being despite protracted illness. A Sexual history, regarding sexual behaviors and pref-
study of 53 patients diagnosed with AIDS demonstrated that erences and history of sexually transmitted diseases,
long-term survivors used numerous strategies to support their which can exacerbate HIV disease progression
health, such as having the will to live, positive attitudes, feeling Lifestyle habits, such as the past and present use of
in charge, a strong sense of self, expressing their needs, and a recreational drugs, including alcohol, which may
sense of humor. Other health-promotion strategies frequently accelerate progression of disease; cigarette smoking,
used by these patients included remaining active, seeking med- which may suppress appetite or be associated with
ical information, talking to others, socializing and pursuing opportunistic infections such as oral candidiasis,
pleasurable activities, good medical care, and counseling.62 hairy leukoplakia, and bacterial pneumonia
Cohen63 examined the relationship between the use of humor to Dietary habits, including risks related to food-borne
cope with stress (coping humor) and perceived social support, illnesses such as hepatitis A
depression, anxiety, self-esteem, and stress, based on a sample of Travel history, to countries in Asia, Africa, and
103 HIV/AIDS patients. The results indicated that patients who South America, where the risk of opportunistic
used more coping humor were less depressed, expressed higher infections increase
self-esteem, and perceived greater support from friends. How- Complete systems review, to provide indications of
ever, the use of coping humor did not buffer stress, anxiety, or clinical manifestations of new opportunistic infec-
immune-system functioning. Stress can also be associated with tions or cancers, as well as AIDS-related complica-
the nancial issues experienced by patients with HIV/AIDS. tions both from the disease and its treatments
Physical Examination. A physical exam should begin with a 8 weeks after treatment is initiated, to determine the effective-
general assessment of vital signs and height and weight, as well ness of the therapy. With adherence to the medication schedule,
as overall appearance and mood. A complete head-to-toe assess- it is expected that the HIV-RNA will decrease by approximately
ment is important and may reveal various ndings common to 1.0 log10 and will continue to decline over the next 16 to 20 weeks
individuals with HIV/AIDS such as 16: until the VL has reached undetectable levels (<50 copies/mL).66
If a patient does not signicantly respond to therapy, the clini-
Oral cavity assessment may indicate candida, oral cian should evaluate adherence, repeat the test, perform a
hairy leukoplakia, or KS. genotyping or phenotyping resistance assay, and rule out mal-
Funduscopic assessment may reveal visual changes absorption or drug interactions. It is anticipated that patients
associated with CMV retinitis; glaucoma screening with low VLs and high baseline CD4 cell counts will respond
annually is also recommended. positively to therapy.67
Lymph node assessment may reveal adenopathy The decision regarding laboratory testing is based on the stage
detected at any stage of disease, yet is indicative of HIV disease, the medical processes warranting initial assess-
of disease progression. ment or follow-up, and consideration of the patient-benet-to-
Dermatological assessment may indicate various burden ratio. Complete blood counts are often measured with
cutaneous manifestations that occur throughout the each VL determination or with a change of antiretroviral ther-
course of the illness such as HIV exanthema, KS, or apy, particularly with patients on drugs known to cause anemia.
infectious complications such as dermatomycosis. Chemistry proles are done to assess liver function, lipid status,
Neuromuscular assessment may indicate various and glycemia every 3 to 6 months or with a change in therapy,
central, peripheral, or autonomic nervous systems and are determined by the patients antiretroviral therapy, base-
disorders and signs and symptoms of conditions line determinations, and co-infections. Abnormalities in these
such as meningitis, encephalitis, dementia, or proles may occur as a result of antiretroviral therapy. Increasing
peripheral neuropathies. hepatic dysfunction is evident by elevations in the serum
Cardiovascular assessment may reveal cardiomyopa- transaminases (AST, ALT, ALP, LDH). Blood work should also
thy related to the use of antiretroviral therapy. include hepatitis C serology (antibody), hepatitis B serology and
GI assessment may indicate organomegaly, speci- Toxoplasma IgG serology.67
cally splenomegaly or hepatomegaly, particularly in Urine analysis should be done annually unless the person is
patients with a history of substance abuse, as well on antiretroviral therapy, which may require more frequent
as signs related to parasitic intestinal infections; follow-up to check for toxicity. Annual Papanicolaou (Pap)
annual stool of guaiac and rectal examination, as smears are also indicated, with recommendations for Pap smears
well as sigmoidoscopy every 5 years, are also parts every 3 to 6 months in HIV-infected women who are sympto-
of health maintenance. matic. Syphilis studies should be done annually; however,
Reproductive system assessment may reveal occult patients with low positive titers should have follow-up testing
sexually transmitted diseases or malignancies, as at 3, 6, 9, 12, and 24 months. Gonorrhea and chlamydia tests are
well vaginal candidiasis, cervical dysplasia, pelvic encouraged every 6 to 12 months if the patient is sexually active.
inammatory disease, or rectal lesions in women In addition, CMV serology for patients with CD4 cell counts
with HIV/AIDS, as well as urethral discharge and under 100 cells/mm3 should be measured every 6 months.16
rectal lesions or malignancies in HIV-infected men. Individuals with CD4 cell counts below 100 cells/mm3 and who
Health maintenance in individuals with HIV/AIDS had negative toxoplasmosis antibodies at baseline should also
also includes annual mammograms in women, as be tested and started on TMP-SMZ (Bactrim) for prophylaxis.
well as testicular exams in men and prostate-specic Annual tuberculin skin testing (TST) is also important
antigen (PSA) annually. for HIV-infected individuals. A TST is considered positive in
patients with induration of greater than or equal to 5 mm. With
Laboratory Data. CD4 counts, both the absolute numbers and a positive TST, a yearly chest radiograph is warranted.
the CD4 percentages, should be evaluated to assist the health
practitioner in therapeutic decision-making about treatments Prophylaxis
of opportunistic infections and antiretroviral therapy. Quanti-
tative RNA determination or VL is also an important marker The primary strategy to prevent the development of oppor-
for disease progression and to measure the effectiveness of tunistic infections is to avoid exposure to microorganisms
antiretroviral therapy.16 The DHHSs Panel on Clinical Prac- in the environment. Secondly, the immune system can be sup-
tices for the Treatment of HIV recommends that VLs be mea- ported and maintained through the administration of pro-
sured upon diagnosis and every 3 to 4 months subsequently. phylactic and/or suppressive therapies, which decrease the
CD4 cell counts should also be measured at the time of diag- frequency or severity of opportunistic infections.68 Primary
nosis in an untreated patient and every 3 to 6 months after- prophylaxis is the administration of a pharmacological agent
ward.66 Immediately before a patient is started on HAART, the to prevent initial infection, while secondary prophylaxis is the
patients HIV-RNA (VL) should be measured, and again 2 to administration of a pharmacological agent to prevent future
occurrences of infection.69 However, due to the effectiveness of the immune system functioning, prolongation of disease-free
HAARTs, there has been a signicant decrease in the incidence survival, and a decrease in the risk of HIV transmission.67
of opportunistic infections. As a result, prophylaxis for life for However, the risks of early therapy initiation include lower
HIV-related co-infections is no longer necessary in many cases.67 quality of life due to the adverse effects of therapy, problems
If HAART restores immune-system function as evident by a with adherence to therapy, and subsequent drug resistance,
rise in CD4 counts, clinicians may stop administering primary with the potential limitation of future treatment options as a
prophylaxis under dened conditions.67 The advantages to end- result of premature administration of available drugs. There is
ing preventive prophylaxis for opportunistic infections in further concern regarding the risks of severe toxicities associ-
selected patients is a decrease in drug interactions and toxicities, ated with certain antiretroviral medications, such as elevations
lower cost of care, and greater adherence to HAART regimens.67 in serum levels of triglycerides and cholesterol, alterations in
Table 371 describes the common opportunistic infections and fat distribution, or insulin resistance and diabetes mellitus.66
recommended prophylactic and alternative regimens that have Given the available data in terms of the relative risk for the pro-
been updated by the U.S. Public Health Service in 2002. In the gression to AIDS, the evidence supports the initiation of therapy
late symptomatic and advanced stages of HIV disease, when for asymptomatic HIV-infected patients with a CD4 T cell count
CD4 counts are low and VL may be high, prophylaxis remains of <350 cell/mm3 or a VL of >55,000 copies/mL. If a patient has
important to protect against opportunistic infections. There- a CD4 count >350 cell/mm3, arguments can be made for both
fore, throughout the illness trajectory, and even in hospice set- conservative and aggressive approaches to therapy. The con-
tings, patients may be taking prophylactic medications, requiring servative approach is based on the belief that a signicant
sophisticated planning and monitoring.35 immune system reconstitution occurs for patients who initiate
In addition, HIV-infected individuals are at risk for severe therapy in the 200350 cells/mm3 range. However, the decision
diseases that are vaccine preventable, such as hepatitis A and B, to start therapy for the asymptomatic patient in this range
tetanus, inuenza, pneumococcal and measles, rubella and involves discussion with the patient of his or her willingness,
mumps. Table 372 presents vaccine-preventable illness and ability, and readiness to begin therapy, and the risk for disease
interventions. Von Gunten and colleagues70 suggest the con- progression given the VL as well as CD4 count. The aggressive
tinuation of prophylaxis in hospice and palliative care settings approach to initiating therapy early is supported by studies
for patients with AIDS as long as patients are able to take oral that indicate suppression of plasma HIV-RNA is easier to
medications. This is because there is a high risk of reactivation maintain when CD4 counts are higher and VLs are lower.66
and dissemination of diseases that can result in a high number It is further recommended that all patients with advanced
of symptoms. Suppressive therapy for herpes infections is also AIDS be treated with antiretrovirals regardless of plasma viral
continued to prevent painful lesions. Von Gunten and col- levels, as well as all patients with thrush or unexplained fevers.
leagues70 also recommend the following plan regarding pro- If a patient is acutely ill with an opportunistic infection or
phylaxis and suppressive therapy in hospice/palliative care: other complication of HIV disease, the timing of antiretroviral
therapy initiation should be based on drug toxicity, ability to
1. If the patient is clinically stable and wants to con-
adhere to the treatment regimen, drug interactions, and labo-
tinue prophylaxis, continue drug therapy.
ratory abnormalities.66 However, maximally suppressive regi-
2. If side effects occur, and the patient continues to be
mens should be used, and patients with advanced AIDS should
otherwise stable, consider alternative regimens.
not discontinue therapy during an acute opportunistic infec-
3. If patient is intolerant of prophylaxis and/or the
tion or malignancy unless there is drug toxicity, intolerance, or
regimens are burdensome, discontinue medications.
drug interactions.66
Although these recommendations were made in 1995, they Given that many studies show that baseline levels of HIV
are still applicable to patients with AIDS who are enrolled in RNA may be lower and CD4 cell counts may be higher when
hospice. AIDS is rst diagnosed in women, federal treatment guidelines
suggest that clinicians initiate HAART in women even when
Indications for Antiretroviral Therapy Across the Illness Tra- the CD4 cell counts are higher than 350 cells/mm3, although a
jectory. Without a cure for HIV disease, all treatments are essen- specic threshold has not been established.66
tially palliative in nature to slow disease progression and limit
the occurrence of opportunistic infections, which adversely Recommended Antiretroviral Therapy. Since the advent of
affect quality of life. The CD4 cell count and VL are used in con- highly active antiretroviral therapy (HAART) in 1995, updated
junction to determine the initiation of antiretroviral therapy. guidelines by the DHHS in July 2003 call for the use of three or
The goal of initiating HAART is to achieve maximum more antiretroviral agents. The recommendations are for three
long-term suppression of HIV RNA and to restore or preserve alternative HAART regimens that sequence the medications
immune system function and thereby reduce morbidity and and preserve one class of drug for future use.67 Currently, triple
mortality and promote quality of life.67 The potential risks versus drug therapy is a rst-line option in lowering VL and limiting the
benets of early or delayed initiation of therapy for asympto- destruction of the immune system.66 Clinical trials indicate that
matic patients must be considered. The benets of early therapy the most effective course of treatment is by combining three or
include earlier suppression of viral replication, preservation of more drugs from the following three categories:
Table 371
Opportunistic Infections and Treatments: Prophylaxis to Prevent First Episode of Opportunistic Disease in Adults and Adolescents
Infected with Human Immunodeciency Virus
Preventive Regimens
Pathogen Indication First Choice Alternatives
Strongly Recommended as Standard of Care

Pneumocystis carinii* CD4+ count <200/L or Trimethoprim-sulfamethoxazole Dapsone, 50 mg PO bid or 100 mg
oropharyngeal candidiasis (TMP-SMZ), 1 DS PO qd (AI) PO qd (BI); dapsone, 50 mg
PO qd plus pyrimethamine, 50 mg
PO qw plus leucovorin, 25 mg
PO qw (BI); dapsone, 200 mg
PO plus pyrimethamine, 75 mg
PO plus leucovorin, 25 mg
PO qw (BI); aerosolized
pentamidine, 300 mg qm via
Respirgard II nebulizer (BI);
atovaquone, 1500 mg PO qd (BI);
TMP-SMZ, 1 DS PO tiw (BI)
Mycobacterium TST reaction 5 mm or Isoniazid, 300 mg PO plus Rifabutin 300 mg PO qd
tuberculosis prior positive TST result pyridoxine, 50 mg PO qd 9 mo plus pyrazinamide, 20 mg/kg PO
Isoniazid-sensitive without treatment or contact (AII) or isoniazid, 900 mg PO qd 2 mo (BIIt); rifampin
with case of active tuberculosis plus pyridoxine, 100 mg PO biw 600 mg PO qd 4 mo (BIII)
9 mo (BI); rifampin, 600 mg plus
pyrazinamide, 20 mg/kg
PO qd 2 mo (AI)
Isoniazid-resistant Same; high probability of Rifampin, 600 mg plus Rifabutin, 300 mg plus
exposure to isoniazid-resistant pyrazinamide, 20 mg/kg pyrazinamide 20 mg/kg PO
tuberculosis PO qd 2 mo (AI) qd 2 mo (BIII); rifampin,
600 mg PO qd 4 mo (BIII); rifabutin,
30 mg PO qd 4 mo (CIII)
Multidrug (isoniazid Same; high probability of Choice of drugs requires None
and rifampin)-resistant exposure to multidrug-resistant consultation with public
tuberculosis health authorities
Toxoplasma gondii IgG antibody to Toxoplasma TMP-SMZ, 1 DS PO qd (AII) TMP-SMZ, 1 SS PO qd (BIII):
and CD4+ count <100/L dapsone, 50 mg PO qd plus
pyrimethamine, 50 mg PO qs plus
leucovorin, 25 mg PO qw (BI);
atovaquone, 1500 mg PO qd with or
without pyrimethamine, 25 mg PO qd
plus leucovorin, 10 mg PO qd (CIII)
Mycobacterium avium CD4+ count <50/L Azithromycin, 1200 mg Rifabutin, 300 mg PO qd (BI);
complex PO qw (AI), or clarithromycin, azithromycin, 1200 mg PO qw
500 mg PO bid (AI) plus rifabutin, 300 mg PO qd (CI)
Varicella-zoster Signicant exposure to Varicella-zoster immune
virus (VZV) chickenpox or shingles for globulin (VZIG), 5 vials
patients who have no history of (1.25 mL each) IM, administered
either condition or, if available, 96 h after exposure, ideally
negative antibody to VZV within 48 h (AIII)
Generally Recommended
Streptococcus All patients Pneumococcal vaccine, None
pneumoniae** 0.5 mL IM (CD4+ 200/L [BII];
CD4+ <200/L [CIII])might
reimmunize if initial immunization
was given when CD4+ <200/L
and if CD4+ increases to >200/L
on HAART (CIII)
Table 371
Opportunistic Infections and Treatments: Prophylaxis to Prevent First Episode of Opportunistic Disease in Adults and Adolescents
Infected with Human Immunodeciency Virus (continued )
Preventive Regimens
Pathogen Indication First Choice Alternatives

Hepatitis B virus (HBV) All susceptible Hepatitis B vaccine: 3 doses (BII) None
(anti-HBc-negative) patients
Inuenza virus All patients (annually, before Whole or split virus, Rimantadine, 100 mg
inuenza season) 0.5 mL IM annually (BIII) PO bid (CIII), or amantadine, 100
mg PO bid (CIII)
Hepatitis A virus (HAV) All susceptible Hepatitis A vaccine: None
(anti-HAV-negative) 2 doses (BIII)
patients with chronic
hepatitis C
Not Routinely Indicated

Bacteria Neutropenia Granulocyte colony-stimulating None
factor (G-CSF), 510 g/kg SC
qd 24 wk or granulocyte-macrophage
colony-stimulating factor (GM-CSF),
250 g/m2 IV over 2 h qd 24 wk (CII)
Cryptococcus CD4 + count < 50/L Fluconazole, 100200 mg Itraconazole, 200 mg
neoformans PO qd (CI) PO qd (CIII)
Histoplasma CD4 + count < 100/L, Itraconazole capsule, None
capsulatum endemic geographic area 200 mg PO qd (CI)
Cytomegalovirus CD4 + count < 50/L and Oral ganciclovir, 1 g PO tid (CI) None
(CMV) CMV antibody positivity
Notes: Information included in these guidelines might not represent Food and Drug Administration (FDA) approval or approved labeling for the particular products or
indications in question. Specically, the terms safe and effective might not be synonymous with the FDA-dened legal standards for product approval. The Respirgard II nebulizer
is manufactured by Marquest, Englewood, Colorado. Letters and Roman numerals in parentheses after regimens indicate the strength of the recommendation and the quality of
evidence supporting it.
Abbreviations: Anti-HBc = antibody to hepatitis B core antigen; b.i.w. = twice a week; DS = double-strength tablet; HAART = highly active antiretroviral therapy;
IgG = immunoglobalin G; q.d. = daily; q.m. = monthly; q.w. = weekly; SS = single-strength tablet; t.i.w. = three times a week; and TST = tuberculin skin test
Prophylaxis should also be considered for persons with a CD4 + percentage of <14%, for persons with a history of an AIDS-dening illness, and possibly for those with CD4 +
counts >200 but <250/L. TMP-SMZ also reduces the frequency of toxoplasmosis and some bacterial infections. Patients receiving dapsone should be tested for glucose-6 phosphate
dehydrogenase deciency. A dosage of 50 mg q.d. is probably less effective than that of 100 mg q.d. The efcacy of parental pentamidine (e.g., 4 mg/kg/mo) is uncertain. Fansidar
(sulfadoxine-pyrimethamine) is rarely used because of severe hypersensitivity reactions. Patients who are being administered therapy for toxoplasmosis with sulfadiazine-
pyrimethamine are protected against Pneumocystis carinii pneumonia and do not need additional prophylaxis against PCP.
Directly observed therapy is recommended for isoniazid, 900 mg b.i.w.; isoniazid regimens should include pyridoxine to prevent peripheral neuropathy. Rifampin should not be
administered concurrently with protease inhibitors or nonnucleoside reverse transcriptase inhibitors. Rifabutin should not be given with hard-gel saquinavir or delavirdine; caution is
also advised when the drug is coadministered with soft-gel saquinavir. Rifabutin may be administered at a reduced dose (150 mg q.d.) with indinavir, nelnavir, or amprenavir; at a
reduced dose of 150 mg q.o.d. (or 150 mg t.i.w.) with ritonavir; or at an increased dose (450 mg q.d.) with efavirenz; information is lacking regarding coadministration of rifabutin with
nevirapine. Exposure to multidrug-resistant tuberculosis might require prophylaxis with two drugs; consult public health authorities. Possible regimens include pyrazinamide plus
either ethambutol or a uoroquinolone.
Protection against toxoplasmosis is provided by TMP-SMZ, by dapsone plus pyrimethamine, and possibly by atovaquone. Atovaquone may be used with or without
pyrimethamine. Pyrimethamine alone probably provides little, if any, protection.

See footnote regarding use of rifabutin with protease inhibitors or nonnucleoside reverse transcriptase inhibitors.
** Vaccination should be offered to persons who have a CD4 + count <200/L, although the efcacy might be diminished. Revaccination 5 years after the rst dose, or sooner if
the initial immunization was given when the CD4 + count was <200/L and the CD4 + count has increased to >200/L on HAART, is considered optional. Some authorities are
concerned that immunizations might stimulate the replication of HIV. However, one study showed no adverse effect of pneumococcal vaccination on patient survival (McNaghten
et al. (1999), reference 134).
These immunizations or chemoprophylactic regimens do not target pathogens traditionally classied as opportunistic but should be considered for use in HIV-infected patients
as indicated. Data are inadequate concerning clinical benet of these vaccines in this population, although it is logical to assume that those patients who develop antibody responses will
derive some protection. Some authorities are concerned that immunizations might stimulate HIV replication, although for inuenza vaccination, a large observational study of HIV-
infected persons in clinical care showed no adverse effect of this vaccine, including multiple doses, on patient survival (J. Ward, CDC, personal communication). Hepatitis B vaccine has
been recommended for all children and adolescents and for all adults with risk factors for HBV. Rimantadine and amantadine are appropriate during outbreaks of inuenza A. Because
of the theoretical concern that increases in HIV plasma RNA after vaccination during pregnancy might increase the risk of perinatal transmission of HIV, providers may wish to defer
vaccination until after antiretroviral therapy is initiated. For additional information regarding vaccination against hepatitits A and B, and vaccination and antiviral therapy against
inuenza, see-CDC. Prevention of hepatitis A through active or passive immunization: recommendations of the Advisory Committee on Immunization Practices (ACIP). MMWR
1996;45(No. RR-15); CDC. Hepatitis B virus: a comprehensive strategy for eliminating transmission in the United States through universal childhood vaccination: recommendations of
the Advisory Committee on Immunization Practices (ACIP). MMWR 1991;40(No. RR-13); and CDC. Prevention and control of inuenza: recommendations of the Advisory Committee
on Immunization Practices (ACIP). MMWR 1999;48(No. RR-4).
In a few unusual occupational or other circumstances, prophylaxis should be considered; consult a specialist.
Acyclovir is not protective against CMV. Valacyclovir is not recommended because of an unexplained trend toward increased mortality observed in persons with AIDS who
were being administered this drug for prevention of CMV disease.

Source: U.S. Department of Health & Human Services (2001), reference 135.
Table 372
Vaccine-Preventable Illness
Condition Evidence Requiring Intervention Intervention
Hepatitis A consider in Hepatitis A antibody-negative Hepatitis A vaccine. Doses

nonimmune sexually active given at 0 and 6 mo
patients
Hepatitis B Hepatitis B antibody-negative Hepatitis B vaccine. Doses
given at 0, 1, and 6 mo
Tetanus No serological test available Consider booster if not
vaccinated within 10 y
Hib No serological test available Routine vaccination has
not been demonstrated to
be benecial; however,
vaccine is inexpensive
Inuenza No serological test available Vaccine should be offered
annually in the fall
Pneumococcal No serological test available Vaccine is given at baseline
and every 68 y
MMR Measles, rubella, and mumps Vaccination not routinely
titer-negative or nonimmune given but may be required
in those never immunized,
particularly students,
teachers, health care workers,
and other care providers
Source: Adapted from Centers for Disease Control and Prevention (1993), reference 131.
Nucleoside-analog reverse transcriptase inhibitors The second category of antiretrovirals developed were the
(NRTIs) NNRTIs. Like the NRTIs, they function by inhibition of the
Nonnucleoside reverse transcriptase inhibitors enzyme reverse transcriptase. Because of the potential risk of
(NNRTIs) resistance, these drugs are not recommended for monother-
Protease inhibitors (PIs) apy, but can be used as triple drug therapy along with an NRTI
and a PI. The NNRTIs are nevirapine (Viramune), delavirdine
The NRTIs were the rst class of antiretroviral agents (Rescriptor), and efavirenz (Sustiva). However, not all PIs can
approved for the treatment of HIV disease and included the be given with NNRTIs; for example, saquinavir should not be
drug known as AZT, also known as zidovudine. NRTIs limit given with efavirenz.
HIV replication early in the HIV life cycle by inhibiting the The third category of antiretrovirals are the PIs, which are
enzyme reverse transcriptase, necessary for transcription of highly potent with limited toxicity. PIs function by inhibiting
viral RNA into DNA. For many years, zidovudine was used as the action of protease by binding to the cleavage site of replicat-
monotherapy, but this is no longer the accepted standard of ing HIV and halting the production of new infectious virions.
care. NRTIs include zidovudine (AZT, ZVD, Retrovir), didano- The PIs include saquinavir (Invirase, Fortovase), nelnavir
sine (ddi, Videx), zalcitabine (ddC, Hivid), stavudine (d4T, (Viracept), ritonavir (Norvir), indinavir (Crixivan), amprenavir
Zerit), lamivudine (3TC, Epivir), abacavir (Ziagen), tenofovir (Agenerase), atazanavir (Reyataz), and lopinavir/ritonavir
(Viread), and emtricitabine (Emtriva).67 The NRTI abacavir, in (Kaletra).
combination with ZDV and 3TC, appears to suppress VL to a The fourth category of antiretrovirals are the viral entry
similar degree when compared to a PI plus two NRTIs after 48 inhibitors, which inhibit the fusion of HIV-1 with CD4 T cells
weeks of follow-up. However, abacavir is associated with poten- by binding to a region of the cell envelope that is involved with
tially life-threatening hypersensitivity syndrome.71 the fusion process. Enfuvirtide (Fuzeon) is the rst approved
To limit the number of medications taken, thereby promot- viral entry inhibitor.67 A summary of the current antiretroviral
ing medication adherence, a combination antiretroviral drug medications is presented in Table 373.
called Combivir, which combines two NRTIs, lamivudine 150 mg To achieve maximal viral suppression, treatment with one
and zidovudine 300 mg, is available as a single tablet. Combivir is potent PI and two NRTIs has proven effective in initial ther-
often taken with a PI. apy. The NNRTI efavirenz used in combination with two NRTIs
Table 373
Antiretroviral Medications
Name Dosage Common Side Effects Special Instructions Drug Interactions
Nucleoside Reverse Transcriptase Inhibitors (NRTIs)

Zidovudine (ZVD, AZT, 200 mg tid or 300 mg bid Neutropenia, anemia, Take with meals to decrease Increased risk of neutropenia with
Retrovir) (higher doses may be nausea, myalgia, malaise, nausea, and myalgias ganciclovir and trimethoprim-
necessary for neurologic headache, insomnia sulfamethoxazole. Methadone increases
disease) blood levels. Stavudine may decrease
effectiveness. Phenytoin alters metabolism
(may increase or decrease levels).
Didanosine (ddI, Videx) EC capsules: 400 mg Peripheral neuropathy, Always take both tablets or all the powder Buffer affects dapsone,
PO qd or chewable abdominal pain, to ensure correct dosage. Take with ketoconazole, protease inhibitors, and
tablets 200 mg bid dry mouth, about 4 oz of water. Should be taken quinolones. Ganciclovir increase blood
altered taste, diarrhea, on an empty stomach (1/2 hr before levels. Concomitant administration of
pancreatitis, rash meals or 12 hr after a meal). Avoid alcohol. pentamidine increases the risk of
Dapsone, ketoconazole, itraconazole pancreatitis.
should be taken 2 hr after didanosine.
Report any numbness, burning, or
tingling. Tetracycline and uoroquinolone
should be administered 2 hr before or
after ddI. Indinavir should be administered
at least 1 hr before or after ddI on an empty
stomach. Ritonavir should be adminis-
tered at least 2 hr before or after ddI.
Zalcitabine (ddC, Hivid) 0.75 mg tid Peripheral neuropathy, Avoid alcohol. Report any numbness, Similar toxicity to didanosine
pancreatitis, rash, fever, burning or tingling. Should be taken and stavudine.
aphthous ulcer, anemia, on an empty stomach.
elevated liver enzymes
Stavudine (D4T, Zerit) >60 kg: 40 mg bid Peripheral neuropa- Avoid alcohol. Report any numbness, Similar toxicity to zalcitabine and
thy, elevated liver enzymes, burning, or tingling. didanosine.
nausea, diarrhea, myalgia
Lamivudine (3TC, Epivir) 150 mg bid or 300 mg qd Mild rash, headache, Can be taken with food. Trimethoprim-sulfamethoxazole
diarrhea, hair loss, increases blood levels.
neutropenia
Abacavir (Ziagen) 300 mg bid Fatal hypersensitivity Take with or without food. Alcohol decreases the elimination
reactions. Common of abacavir, causing an increase
side effects: nausea, in overall exposure.
vomiting,diarrhea, anorexia,
insomnia,fever, headache,
skin rash.
(continued )
683
684
Table 373
Antiretroviral Medications (continued )
Name Dosage Common Side Effects Special Instructions Drug Interactions
Tenofovir (Viread) 300 mg qd Asthenia, nausea, vomiting, Take with food.

diarrhea, atulence, may be
transient renal toxicity
Emtricitabine (Emtriva) 200 mg qd Skin discoloration, Take with or without food.
hyperpigmentation of
palms &/or soles of feet
Lamivudine/zidovudine 1 tab bid (150 mg of Headache, malaise, fatigue, Can be taken with food to Co-administration of ganciclovir,
(Combivir, Trizivir) lamivudine and 300 mg nausea, diarrhea, cough decrease nausea. interferon-alpha or other
of zidovudine per tablet) bone-marrow-suppressive or
cytotoxic agents may increase the
hematoxicity of ZVD.
Nonnucleoside Reverse Transcriptase Inhibitors (NNRTIs)

Nevirapine (Viramune) 200 mg, every day for Rash, pruritus, fever, Discontinue if severe rash Decreases protease inhibitor levels
2 weeks, then 200 mg thrombocytopenia, develops. Monitor liver function (induces cytochrome P450 enzymes)
every 12 hr or 400 mg qd elevated liver enzymes tests. Should not be used concur-
rently with hormonal contraception.
Delavirdine (Rescriptor) 400 mg tid or 600 mg bid Rash, fever, elevated liver Take on an empty stomach. Monitor Increases protease inhibitors,
enzymes liver function test. Should be taken clarithromycin, dapsone, rifabutin,
1 hr before or after ddI or antacids. ergot alkaloids, dihydropyrides,
quinidine, and warfarin levels (inhibits
cytochrome P450 enzymes).
Efavirenz (Sustiva) 600 mg PO with protease Psychiatric and nervous system Taken with or without food. Drugs that induce CYP3A4 activity such
inhibitor or NRTI symptoms such as dizziness, If taken with food, a high-fat meal as phenobarbital, rifampin, and rifabutin,
abnormal dreams, impaired should be avoided. If taken at bed- would be expected to increase the
concentration, delusions, time,there is improved tolerability clearance of efavirenz, therefore resulting
insomnia, abnormal behavior, of nervous system side effects. in lower plasma concentrations. Warfarin
and rash plasma concentrations and effects are
potentially increased or decreased with
efavirenz. The dose of indinavir should be
increased from 800 mg to 1000 mg if
co-administered with efavirenz.
Saquinavir and clarithromycin plasma
concentrations are decreased by efavirenz
Protease Inhibitors (PIs)
Indinavir (Crixivan) 800 mg tid Nephrolithiasis, Lactose-intolerant patients should take Inhibits cytochrome P450. Ketoconazole
hyperbilirubinemia, fatigue, with Lactaid tablets. Should be taken on increases blood levels; rifabutin and
headache, nausea, an empty stomach or with light, low to rifampin decrease blood levels;
abdominal pain nonfat meal. Increase water intake astemizole, terfenadine, cisapride, and
each day (at least 48 oz of uid in adults). triazolam increases the risk of
Never take double doses unless instructed. dysrhythmias.
Nelnavir (Viracept) 750 mg tid Mild diarrhea, elevated Never take double doses unless instructed. Inhibits cytochrome P450. Rifabutin and
liver enzymes Should be taken with a meal or light snack. rifampin decrease blood levels;
Should be administered 2 hr before of astemizole, and cisapride increase risk
1 hr after ddI. of dysrhythmias.
Ritonavir (Norvir) 600 mg bid Nausea, vomiting, diarrhea, Therapy should be started at a low dose and Inhibits cytochrome P450. Numerous
taste alterations, paresthesias increased over 5 days to decrease nausea. drug interactions.
(hands, feet, and lips), Never take double doses unless instructed.
elevated triglycerides Monitor liver function test. Evaluate patients
medications prole before administering.
Amprenavir (Agenerase) 1,200 mg bid oral solution Increased LFTs, oral Avoid high fat meals. If patients have sulfa allergy, higher
1,400 mg bid paresthesias, transient rash. incidence of amprenavir skin reactions.
Atazanavir (Reyataz) 400 mg qd Hyperbilirubinemia; lower Take with food.
hypertriglyceridemia than
other protease Inhibitors
Lopinavir/ritonavir 3 capsules
(Kaletra) (LPV 400 mg/RTV 100 mg) Elevated transaminase levels Take with food.
Viral Entry Inhibitors

Enfuvirtide (Fuzeon) 90 mg sc bid Cardiac conduction
abnormalities
Saquinavir (Invirase 600 mg tid Headache, nausea, diarrhea Should be taken within 2 hr of a full meal. Inhibits cytochrome P450. Rifabutin and
[hard gel capsule] and Never take a double dose unless instructed. rifampin decrease blood levels;
Fortovase [soft gel capsule]). Lactose intolerant patients should take with ketoconazole, itraconazole, and ritonavir
Lactaid tablets. increase blood levels; terfenadine and
astemizole increase risk of dysrhythmias.
Source: Adapted from Murphy & Flaherty (2003), reference 67, and Porche (1999), reference 69.
has also been shown to produce maximal viral suppression.71 on the patient, or compromised adherence caused by the
The three alternative HAART regimens include: inconvenience of difcult regimens. However, the decision to
change therapy should take into account whether other drug
Triple NRTIs combination
choices are available because another regimen may also be
One NNRTI (Nevirapine) plus two NRTIs
poorly tolerated or fail to result in better viral suppression, and
A combination of one PI, one NNRTI, and one
such a change may limit future treatment options.67 The crite-
NRTI67
ria for considering changing a patients antiretroviral regimen
The advantages of class-sparing regimens, such as a regi- include:
men that is PI based and NNRTI sparing, is that clinical and
Less than a 0.5 to 0.75 log10 reduction in plasma
virological efcacy is well documented, CD4-count increases
HIV-RNA by 4 weeks after initiation of therapy or
are more robust than with other approaches, two steps of the
less than a 1.0 log10 reduction in 8 weeks
viral replication process are targeted, and resistance requires
Failure to suppress plasma HIV RNA to unde-
multiple mutations. The disadvantages may be related to
tectable levels within 4 to 6 months after initiating
adherence and long-term side effects such as lipodystrophy,
therapy
hyperlipidemia, and insulin resistance, as well as increases in
3-fold or greater increase from the nadir of plasma
cardiovascular disease and bone abnormalities (osteonecrosis,
HIV-RNA not attributable to intercurrent infection,
osteoporosis, and osteopenia).67 Other adverse effects associ-
vaccination, or test methodology
ated with HAART include hepatotoxicity, hepatic stenosis, lac-
Persistent decline in CD4 cell numbers measured on
tic acidosis, and skin rash.67 Change from one potent induction
two separate occasions
regimen to another potent regimen may be necessary if the
Clinical deterioration66
patients triglyceride and cholesterol levels become elevated, as
lipodystrophy can be induced by protease inhibitors. Although Clinicians should consult with HIV/AIDS specialists when
the addition of hydroxyurea to certain antiretroviral regimens considering a change in regimen. Furthermore, the change in
may enhance the activity of these agents, the role of hydrox- an antiretroviral regimen can be guided by drug-resistance
yurea in HIV treatment remains uncertain given the relative tests, such as genotyping and phenotyping assays. Drug resis-
lack of information from controlled trials and the number of tance is a major short-term risk associated with any level of
toxicities.71 viral replication.67
New Treatment Strategies. In addition to the newly approved Concern Regarding Drug Interactions. Considerations are also
viral entry inhibitors, new treatment strategies include to be given to possible drug interactions such as pharmaco-
mega HAART, structured treatment interruptions (STI), and kinetic interactions, which occur when administration of one
immune-based therapies.67 Mega-HAART has been successful agent changes the plasma concentration of another agent,
in achieving viral suppression in individuals with extensive re- and pharmacodynamic interactions, which occur when a drug
sistance to antiretroviral medications. In mega-HAART, up to interacts with the biologically active sites and changes the
9 antiretroviral medications are administered. It is believed pharmacological effect of the drug without altering the plasma
that no single virion is resistant to all nine drugs and, there- concentration. For example, in palliative care, drug interactions
fore, these drugs may reduce VL. However, given the drug tox- have been reported for patients who are receiving methadone
icities and expense, most patients cannot tolerate this regimen for pain management and who begin therapy with an NNRTI,
for extended periods.67 Although it was believed that individu- nevirapine. These individuals have reported symptoms of opi-
als who have a signicant antiretroviral drug resistance would oid withdrawal within 4 to 8 days of beginning nevirapine due
benet from interruptions of all antiretroviral medications to to its effect on the cytochrome P-450 metabolic enzyme CYP3A4
allow for a more drug-sensitive strain of HIV-RNA to emerge, and its induction of methadone metabolism.72 See Table 373 on
current federal guidelines do not recommend the use of STIs antiretroviral medications for dosages, common side effects,
in individuals with advanced illness until further research can special instructions, and drug interactions.
be done. This is because STI are associated with a signicant
increase in VL, a signicant decline in CD4 counts, and clinical Use and Continuation of Antiretrovirals in the Hospice/Pallia-
disease progression.67 In addition, there is intense investigation tive Care Setting and in Patients with Organ Failure. At pres-
of immune-based therapies such as cytokines, particularly ent, the aims of antiretroviral therapy are to prevent progression
interleukin-2, which is used in combination with antiretrovi- to AIDS, prevent the direct effects and symptoms of HIV dis-
ral therapies to boost the immune system and increase CD4 ease, such as dementia, neuropathy, and diarrhea, and prevent
cell counts.66 the complications of AIDS. According to Von Gunten and col-
leagues,70 the continuation of antiretroviral therapy in hospice
Reasons to Change a Regimen. A change in regimen may be or palliative settings is often contingent on the feelings of
necessary due to insufcient viral suppression evident by an patients regarding the therapy. Patients can be asked, How
increase in VL, inadequate increase in CD4 cell counts, or evi- do you feel when you take your antiretroviral medications?
dence of disease progression, as well as adverse clinical effects Because medications may still symbolize hope, patients who
enter hospice may have a greater acceptance of their mortality because of the markedly decreased clearance of ZVD and
and wish to stop antiretrovirals because of the side effects. increased drug half-life, it is recommended that the daily
Other patients may wish to continue antiretroviral therapy dosage of ZVD be reduced by approximately 50% in patients
because of its symptom relief and the prevention of future with severe renal dysfunction (CrCL, 25 mL/min), for those
symptoms related to opportunistic infections. Von Gunten and receiving hemodialysis, and for those with hepatic dysfunc-
colleagues70 suggest the following plan: tion.74 In addition, due to reduced drug clearance, patients
should be monitored for ZVD-related adverse effects.
1. If the drug causes burdensome symptoms, discon-
Although specic dosage recommendations are available
tinue.
for some of the early developed antiretrovirals for patients
2. If the patient no longer wants the drug, discontinue.
with organ dysfunction or failure, there are no specic studies
3. If the patient is asymptomatic and wants the drug,
that provide guidelines for the dosing of many of the new anti-
continue with close clinical assessment.
retroviral agents. As many of the antiretroviral agents are
4. Discontinue the measurement of VLs and CD4
metabolized by the liver and excreted by the kidney, knowl-
counts and help the patient focus on relief of
edge of pharmacokinetic properties of antiretroviral drugs is
symptoms.
recommended to monitor drug therapy for efcacy and safety.74
In the hospice and palliative care settings, it is important for The suggested dosing recommendations for antiretroviral
clinicians to discuss with patients and families their goals of agents in patients with organ dysfunction are presented in
care to make important decisions regarding the appropriate- Table 374.
ness of curative, palliative, or both types of interventions.
More specically, examples of clinical decisions about pallia-
Adherence to Therapy. Adherence, which is the extent to
tive or disease-specic care include73:
which a persons behavior coincides with medical and health
The use of blood transfusions, psychostimulants, or advice,75 is essential to health maintenance for patients with
corticosteroids to treat fatigue in patients with late- HIV/AIDS because nonadherence to antiretroviral therapy
stage AIDS may lead not only to resistance to a whole class of drug, espe-
Aggressive antiemetic therapy for PI-induced nau- cially PIs, but also may affect systemic drug concentration,
sea and vomiting, or discontinuation of such anti- intracellular drug concentration, drug potency, viral resis-
retroviral therapies, given severe side effects tance, and viral inhibition.76
Continued suppressive therapy for CMV retinitis to Medication adherence is dened as the ratio of medication
prevent blindness, or use of amphotericin B for doses taken to those prescribed with a cutoff of 80% to categorize
azole-resistant candidiasis for patients who wish the patient as adherent.76 However, there is concern that with
to continue eating, or other prophylactic medica- HAART therapy optimal viral suppression requires 90% to
tions in dying patients 95% adherence.67 Simplifying the patients HAART regimen to
Palliative treatment of disseminated MAC in decrease the number of medications taken and the number of
patients with advanced disease who are unwilling to times the patient has to take medications can improve adher-
take anti-infectives or withdrawal of MAC or PCP ence.67 Assessment of adherence is most often done by self-report,
prophylaxis in patients who are expected to die soon with studies showing that it is a valid indicator of adherence.77
Use of HAART for short-term palliation of symp- Asking patients to bring their medications to a health visit, to
toms related to high VLs, or withdrawal of HAART describe their pill-taking regimens, to review the number of
after evident treatment failure, with assessment of doses taken in 24 hours, and to ask about problems taking the
medical risk-benet and emotional value of therapy medications and effects of the medications are important aspects
Decisions to initiate HAART in newly diagnosed of assessment.76 Factors not predictive of adherence include age,
late-stage patients sex, race, education, occupation, and socioeconomic status,78
while factors predictive of adherence include79:
Selwyn and Rivard73 suggest that decisions regarding these
issues need to be based on the specic goals of care, such as Patient characteristics, such as physical and emo-
quality of life or life prolongation, the use of palliative care tional health, material resources, cultural beliefs,
interventions to relieve the side effects of other medications, self-efcacy, social support, personal skills, and HIV
and the use of certain disease-specic therapies to enhance knowledge
quality of life, as well as the decision to not prolong life when Clinician factors, including interpersonal style,
a certain threshold is met, such as progressive dementia. availability, as well as assessment, communication,
The use of antiretrovirals must also be seriously considered and clinical skills
for patients who have organ dysfunction or failure, given Medication regimen factors, such as frequency,
changes in hepatic and renal function and the effects on drug number, and size of pills, taste of pills, storage, side
elimination. For example, patients with renal impairment may effects, effectiveness, and cost
be at greater risk for zidovudine-induced hematological toxic- Illness factors, including symptoms duration, sever-
ity due to lowered production of erythropoietin. In addition, ity, and stigma
688
Table 374
Dosing Recommendations for Antiretroviral Agents in Patients with Organ Dysfunction
Renal Dysfunction
Creatinine Clearance (mL/min)
Drug and Body Weight 50 2649 1025 <10 Hemodialysis Hepatic Dysfunction
Zidovudine 200 mg q8h 200 mg q8h 100 mg q8h 100 mg q8h 100 mg q8h 100 mg q8h
Didanosine
60 kg 200 mg q12h 200 mg q24h 100 mg q24h 100 mg q24h 100 mg q24h* Consider empiric dosage reduction
<60 kg 125 mg q12h 125 mg q24h 50 mg q24h 50 mg q24h 50 mg q24h* in moderate to severe disease
Zalcitabine 0.75 mg q8h 0.75 mg q12h 0.75 mg q12h 0.75 mg q24h 0.75 mg q24h* 0.75 mg q8h
Stavudine
60 kg 40 mg q12h 40 mg q24h 20 mg q24h 20 mg q24h 20 mg q24h* 40 mg q12h
<60 kg 30 mg q12h 30 mg q24h 15 mg q24h 15 mg q24h 15 mg q24h* 30 mg q12h
Lamivudine 150 mg q12h 150 mg q24h 150 mg 1, 150 mg 1, then 150 mg 1, then 150 mg q12h
then 100 mg q24h 2550 mg q24h 2550 mg q24h*
Nevirapine 200 mg q12h 200 mg q12h 200 mg q12h 200 mg q12h NR* Consider empiric dosage reduction
Delavirdine 400 mg q8h 400 mg q8h 400 mg q8h 400 mg q8h NR* Consider empiric dosage reduction
Efavirenz 600 mg q24h 600 mg q24h 600 mg q24h 600 mg q24h NR* Consider empiric dosage reduction
Saquinavir 600 mg q8h 600 mg q8h 600 mg q8h 600 mg q8h NR* Consider empiric dosage reduction
Ritonavir 600 mg q12h 600 mg q12h 600 mg q12h 600 mg q12h NR* Consider empiric dosage reduction
Indinavir 800 mg q8h 800 mg q8h 800 mg q8h 800 mg q8h NR* Mild to moderate: 600 mg q8h
Severe: consider further dosage reduction
Nelnavir 750 mg q8h 750 mg q8h 750 mg q8h 750 mg q8h NR* Consider empiric dosage reduction
*Administer daily dose after completion of hemodialysis.

No specic recommendations available. Patients should be carefully monitored for adverse effects.
Data shown for hard gelatin capsule formulation. Dosage for soft gelatin capsule is 1200 mg q8h.
NR = No recommendations.
Source: Hilts and Fish (1998), reference 74.
Table 375
Interventions to Improve Antiretroviral Medication Adherence
Type of Intervention Specic Examples
Interventions addressing the patient

Key patient education topics Dynamics of HIV infection
Purpose of antiretroviral therapy
All names of medications
Reasons for dose and administration requirements
Potential side effects
Techniques for managing side effects
Cues and reminders for patient Detailed daily schedule
Doses planned to coincide with daily habits
(favorite TV program, morning news)
Medication boxes and timers (available from some
pharmaceutical companies)
Prepoured medications
Unit-of-use packaging
Patient involvement in therapeutic plan Contributes to choice of antiretroviral
combination
Self-control of medications for side effects
Anticipatory planning for weekends, vacations
Rewards and reinforcements Positive feedback: falling HIV RNA level, rising
CD4+ cell count, fewer clinic appointments
Social support for adherence Involvement of signicant others
Support groups
Peer counseling and buddy plans
Treatment of concomitant conditions such as
substance abuse, depression
Case management and nancial assistance
Home visits and telephone follow-up
Interventions addressing the clinician

Continuing education regarding Importance of adherence
Factors associated with adherence
Techniques to increase adherence
Teaching skills
Communication skills
Effective management of side effects
Cues and reminders for the clinician User-friendly medication review forms
Tables and checklists in the clinical chart
Patient teaching tools
Social support Involvement of colleagues
Team approach
Administrative approval for additional time spent
with patient on adherence concerns
Interventions addressing the regimen Once- or twice-a-day dosing regimens

Use of fewer pills per day
Use of smaller pills or capsules
Improved taste
Simpler storage requirements
Fewer side effects
Increased effectiveness
Decreased cost
Source: Williams (1999), reference 76. Copyright 1999 with permission from Elsevier.
Adherence to medication regimens can be improved through quality, as well as factors that exacerbate or alleviate
educational, behavioral, and social interventions, specic to the symptom, are important to ask. Patients can also
the patient, clinician, and medication regimen (Table 375).76 be asked to rate the severity of a symptom by using a
An established partnership and an open, trusting, and sup- numerical scale from 0 to 10, with 0 being no symp-
portive relationship between patient and clinician remain key tom to 10 being extremely severe. Such scales can
factors in promoting not only adherence to medication regi- also be used to rate how much a symptom interferes
mens, but support of all health-promotion and management with activities of daily life, with 0 meaning no inter-
initiatives to delay disease progression and AIDS-related com- ference and 10 meaning extreme interference.
plications. Many patients seek medical care for a specic symp-
tom, which requires a focused history, physical
exam, and diagnostic testing. Throughout the con-
o] tinuum of HIV disease, CD4 counts and percent-
AIDS-Related Opportunistic Infections ages, VLs, and blood counts and chemistries may
and Malignancies provide useful information for the management of
the disease and its symptoms. Assessment of current
Opportunistic infections are the greatest cause of morbidity medications and complementary therapies, includ-
and mortality in individuals with HIV disease. Given the coming vitamin therapy, past medical illness that may be
promised immune system of HIV-infected individuals, there is exacerbated by HIV disease, and the administration
a wide spectrum of pathogens that can produce primary, life- regimen of chemotherapy and radiation therapy
threatening infections, particularly when the CD4 cell counts should also be ascertained to determine the effects
fall below 200 cells/mm3. Given the weakened immune sys- of treatment, side effects, adverse effects, and drug
tems of HIV-infected persons, even previously acquired infec- interactions. However, when treatment is no longer
tions can be reactivated. Most of these opportunistic infections effective, as in the case of extremely advanced dis-
are incurable and can at best be palliated to control the acute ease, practitioners must reevaluate the benets ver-
stage of infection and prevent recurrence through long-term sus burden of diagnostic testing and treatments,
suppressive therapy. In addition, patients with HIV/AIDS often particularly the need for daily blood draws or more
experience concurrent or consecutive opportunistic infections invasive and uncomfortable procedures. When the
that are severe and cause a great number of symptoms. In decision of the practitioners, patient, and family
Table 376, the various categories of opportunistic infections is that all testing and aggressive treatments are
and malignancies are reviewed with regard to epidemiology/ futile, their discontinuation is warranted.
pathogenesis, presentation and assessment, diagnosis, and Treatment of opportunistic infections and malig-
interventions.10,13 nancies often requires support of the patients
immune system, antiretroviral therapy to decrease
the VL and improve CD4 cell counts, and medi-
cations and therapies to cure the patient of oppor-
o]
tunistic infections or merely palliate the associated
Pain and Symptom Management in HIV Disease
symptoms. Indeed, the treatment of symptoms to
improve quality of life plays an important role in
Patients with HIV/AIDS require symptom management not
the management of HIV disease throughout the
only for chronic debilitating opportunistic infections and mali-
course of the illness.22 In the case of many infec-
gnancies, but also for the side effects of treatments and other
tions, acute treatment is followed by the regular
therapies. There are ve broad principles fundamental to
dosing or maintenance therapy to prevent symptom
successful symptom management: (1) taking the symptoms
recurrence. To maximize the quality of life, each
seriously, (2) assessment, (3) diagnosis, (4) treatment, and (5)
patients treatment regimen and plan of care should
ongoing evaluation.80
be individualized, with documentation of the treat-
Taking the symptoms seriously implies that symp- ment response and ongoing evaluation.
toms often are not observable and measurable. Ongoing evaluation is key to symptom management
Therefore, self-report of the patient should be taken and to determining the effectiveness of traditional,
seriously by the practitioner and acknowledged as a experimental, and complementary therapies.
real experience of the patient. An important rule in Changes in therapies are often necessary because
symptom management is to anticipate the symptom concurrent or sequential illness or conditions occur.80
and attempt to prevent it.38 Assessment and diagno-
sis of signs and symptoms of disease and treatment In an article regarding the symptom experience of patients
side effects requires a thorough history and physical with HIV/AIDS, Holzemer81 emphasizes a number of key tenets,
examination. Questions as to when the symptom specically: (1) the patient is the gold standard for under-
began and its location, duration, severity, and standing the symptom experience; (2) patients should not be
Table 376
Opportunistic Infections and Malignancies Associated with HIV/AIDS
Types of Infections
and Malignancies Epidemiology/Pathogenesis Presentation and Assessment Diagnosis Interventions
Fungal Infections
Candida albicans Ubiquitous organism. Oral Candida manifests as Often presumptive by tissue Mucotaneous infection
Occurs with immunosuppression/ pseudomembranous white patches, inspection. Wet mount and/or treated locally with clotrimazole
alteration in mucous membranes easily removed, leaving erythematous potassium hydroxide (KOH) troches, nystatin suspension,
or skin. Early manifestation of HIV. or bleeding mucosa. Vaginal smear showing budding hyphae. uconazole, miconazole, or
Predictor of disease progression. candidiasis manifests with pruritus Esophageal diagnosis by endoscopy amphotericin B
Human-to-human transmission and curdlike vaginal discharge. with biopsy. Diagnosis by
possible. Oropharyngeal Esophageal candidiasis manifests culture is unreliable.
candidiasis common. with dysphagia. Candida leukoplakia
cannot be removed.
Coccidioides immitis Endemic to south western May be asymptomatic or with Chest radiographs may show System amphotericin B,
(Coccidioidomycosis) United States. Acquired by progressive signs of fever, malaise, diffuse interstitial or nodular followed by lifelong suppressive
inhalation of spores. Occurs weight loss, cough, fatigue. inltrates. Denitive diagnosis by therapy with oral uconazole
with CD4+ count <250 L. culture or direct visualization of the
organism in sputum, urine, or CSF.
Cryptococcus neoformans Ubiquitous organism. Aerosolized Meningitis is most common
(Cryptococcosis) and inhaled. Most common clinical manifestation, with Serum cryptococcal antigen is 99% Acute therapy with
life-threatening infection headache, fever, stiff neck, indicative. Examination of CSF. amphotericin B with or without
in AIDS. Cryptococcus meningitis photophobia, lethargy, and Infection of extrameningeal sites uconazole, then lifelong
has a high mortality rate. confusion. Symptoms develop diagnosed with India ink and culture suppression with uconazole
over 24 wk. Cranial nerve of tissues and specimens. MRI or
palsies occur. Decreased vision; CT scan can show cryptococcoma.
can lead to blindness. Cryptococcal Chest radiographs show diffuse or
pneumonia may present with cough, focal inltrates with or without
dyspnea. Infection may disseminate mediastinal adenopathy.
to bone marrow, kidney, liver, spleen,
lymph nodes, heart, oral cavity,
and prostate.
Histoplasma capsulatum Endemic to midwest and south Cough with fever. Often disseminated Chest radiographs show diffuse Amphotericin B for serious
central United States. Spores disease rather than pneumonitis. bilateral interstitial inltrates. One illness or itraconazole or
are inhaled. Occurs with Signs and symptoms include fever, third have normal chest radiograph; uconazole for mild disease.
CD4+ counts <100 L. weight loss, night sweats, nausea, 510% have cutaneous lesions Lifelong therapy of itraconazole
diarrhea, abdominal pain. or uconazole
(continued )
692
Table 376
Opportunistic Infections and Malignancies Associated with HIV/AIDS (continued)
Types of Infections
Mycobacterial Infections
Mycobacterium Increase in infections attributable Fever, weight loss, night sweats, and Positive PPD is dened as >5 mm Four-drug regimen with
tuberculosis (TB) to the high incidence of HIV fatigue are initial complaints. of induration at 4872 h using isoniazid, rifampin,
infection. HIV infection may With pulmonary TB, dyspnea, Mantoux intradermal method. pyrazinamide, and either
lead to reactivation of latent hemoptysis, and chest pain may occur. Check for anergy with use of streptomycin or ethambutol.
TB infection. Outbreaks of Extrapulmonary sites such as lymph mumps and Candida. Chest Prophylaxis with isoniazid or
multidrug-resistant TB. Caused nodes, bones, bone marrow, joints radiographs show apical or rifampin for individuals
by inhalation of infectious particles liver, spleen, skin, and CSF may cavitary inltrates, and may show without current active TB.
that are aerosolized. Can have latent show TB. intrathoracic adenopathy.
infection with no symptoms of Diagnosis conrmed by sputum
active TB. Extrapulmonary TB for acid-fast bacilli (AFB) stain.
may occur in 70% of HIV-infected Blood cultures for AFB
patients; TB decreases CD4+ count should be obtained.
and increases viral load.
Mycobacterium Composed of M. avium and M. Respiratory symptoms uncommon. Positive cultures from normally Macrolide (clarithromycin or
avium intracellulare intracellulare, two related species. MAC bacteremia is the most common sterile sites (e.g., blood, azithromycin) and rifabutin and
(MAC) Exists in water, soil, and foodstuffs. syndrome. Fever, fatigue, weight loss, bone marrow, lymph nodes). ethambutol for acute treatment.
Person-to-person transmission is anorexia, nausea and vomiting, Conrmed by biopsy with Prophylaxis with rifabutin or
not likely. Most common cause of night sweats, diarrhea, abdominal AFB stain. Lab studies usually clarithromycin or azithromycin
systemic bacterial infection in AIDS. pain, hepatosplenomegaly, and demonstrate anemia and
Disseminated disease frequently the lymphadenopathy are common elevated alkaline phosphatase.
cause of mortality in advanced symptoms.
HIV disease.
Viral Infections
Cytomegalovirus Ubiquitous, human herpesvirus. CMV retinitis most common form; CMV retinitis on ophthalmoscopic High doses of ganciclovir or
(CMV) Most common cause of serious if untreated, can quickly lead to exam shows creamy yellow-white foscarnet, followed by lifelong
opportunistic disease in AIDS. blindness. May be asymptomatic or exudate with retinal hemorrhage. daily IV infusions, with
May have contracted primary with painless loss of visual acuity GI CMV is demonstrated by maintenance doses of one of
infection in childhood or young and symptoms of oaters or visual endocscopy showing ulceration these two medications
adulthood. Occurs in >40% of eld defects, or conjunctivitis. and tissue biopsy.
patients with CD4+ count <50/L. GI tract is second most common site,
with symptoms of dysphagia,
abdominal pain, odynophagia,
fever, bloody diarrhea, and colitis.
Herpes simplex HSV-1 transmitted primarily by Cutaneous ulcerative, vesicular painful Visual infection with conrmation Acyclovir is used in primary
virus (HSV) contact with mucous membranes lesions on any part of the body, by viral swab culture. If vesicle is therapy. IV acyclovir for severe
and salivary secretions. HSV-2 particularly face, genitals, or perianal present, it should be unroofed HIV infection or HSV
spread by sexual transmission. area. May cause esophagitis with with 18-gauge needle and swabbed encephalitis. Topical acyclovir
Risk with CD4+ count <100/L. dysphagia and odynophagia. over the base of the ulcer. ointment to relieve subjective
symptoms. Maintenance therapy
with acyclovir to prevent
reactivation.
Varicella-zoster virus Herpesvirus; may be initial Radicular pain, a localized burning, Clinical appearance. Cutaneous Acyclovir, famciclovir,
(VZV) (herpes presentation of HIV infection. followed by localized maculopapular scrapings stained with ganciclovir, or foscarnet for
zostershingles) Recurrent or disseminated VZV rash along a dermatome progress- uorescein-conjugated monoclonal acute treatment
is seen with advanced HIV disease. ing to uid-lled continuous vesicles. antibodies to conrm presence
Primary VZV is chickenpox. Postherpatic neuralgia may persist of VZV antigens.
for months after lesions have healed.
Visceral dissemination to lung, liver,
or CNS is life threatening.
Human papilloma Most prevalent STD. Occurs Genital and perianal warts in men Cytological dysplasia evident Trichloroacetic acid 50% or
virus (HPV) with increased frequency in and women. Internal warts may on smears. podophyllin 25% or podolox
immunocompromised patients also occur. or 5-uorouracil cream for acute
treatment. Electrosurgery or
surgical excision
Protozoal Infections
Cryptosporidium parvum Transmitted through fecally Profuse watery diarrhea, severe Conrmed by modied Restore immune system with
contaminated water or food. crampy abdominal pain, nausea, acid-fast or uorescent HAART. No currently approved
May spread person-to-person atulence, weight loss, electrolyte antibody stain of stool specimen specic agent. Paromomycin
in HIV-infected individuals. imbalance, dehydration. May lead to or small bowel biopsy. or nitrazoxanide may
Oocyts can remain active malabsorption and be benecial
outside the body for 26 mo. wasting syndrome.
Major cause of diarrhea
when CD4+ count <200/L.
Toxoplasma gondii Occurs worldwide in humans Toxoplasmosis encephalitis most Laboratory studies nonspecic. Pyrimethamine and folinic acid
and domestic animals, particularly common with headache, fever, CT scan with contrast or as rst-line treatment for acute
cats. Oocyts transmitted in altered mental status, focal brain MRI shows multiple diffuse infection. Second-line treatment
infected meats, eggs, vegetables, neurological decits, and seizures. mass lesions with edema. with clindamycin or atovaqu-
and other food products. Major Examination of CSF usually one-oneor clarithromycin
cause of neurological morbidity and is not helpful. or mycin. Lifelong prophylaxis
mortality, especially in individuals with TMP-SMX for those
with CD4+ count <100 L. with CD4+ count <100/L.
(continued )
6
694
Table 376
Opportunistic Infections and Malignancies Associated with HIV/AIDS (continued )
Types of Infections
Isospora belli Distributed throughout the animal Profuse watery, diarrhea, with stool Identication of oocytes in TMP-SMX or pyrimethamine
kingdom and endemic to parts output averaging 810 bowel the stool. Suggest minimum of for acute treatment.
of Africa, Chile, and Southeast Asia. movements per day, steatorrhea, four stool specimens taken for Maintenance treatment with
Transmission through direct contact headache, fever, malaise, abdominal patients with AIDS. A rapid either agent.
with infected animals, persons, or pain, vomiting, dehydration, autouorescence technique may
contaminated water. Shed in the and weight loss. help in making a more rapid and
stool of humans or host animals. reliable diagnosis.
Latino and foreign-born persons are
at greater risk.
Microsporidia Includes multiple species that are Profuse watery diarrhea, with Poor staining qualities. HAART has led to the resolution
pathogenic to humans. Worldwide crampy abdominal pain, Detection requires endoscopy of this infection. Albendazole
distribution. Occurs with malabsorption, weight loss, with small bowel biopsy. and octreotide have
CD4+ count <100 L. and wasting. proved benecial.
Fecaloral transmission by ingestion
of spores. Can live outside body for
for up to 4 months
Bacterial Infections
Streptococcus Most common causes of bacterial Abrupt onset with fever, cough Chest radiograph shows dense Clarithromycin or azithromycin
pneumoniae and pneumonia in HIV-infected with purulent sputum, segmental or lobar consolidation. used to treat or prevent
Haemophilus inuenzae individuals. Occurs ve times and systemic toxic effects. Chest radiograph may show infection. Low-dose TMP-SMX
(community acquired) more frequently with CD4+ <200 L. nodular patterns or diffuse as secondary prophylaxis for
Reaches the lungs through interstitial inltrates. sinopulmonary infections.
inhalation, aspiration of secretions Vaccination against
from mouth or oropharynx, or H. inuenzae in persons with
spread by blood from another site. HIV infection.
Pseudomonas aeruginosa Important pathogen in late HIV Fever, cough, dyspnea, chest pain, Blood and sputum cultures. Optimize immunological status
disease. Isolated from soil, water, sinusitis. May have recurrent Focal chest radiograph similar to because PCP or MAC
plants, and animals. Most frequently cellulitis. other bacterial pneumonias prophylaxis is not effective in
acquired nosocomial pulmonary or prevention of Pseudomonas.
cutaneous infection. High rate of Treatment requires two or more
relapse in those who survive anti-pseudomonal agents.
initial infection.
Salmonella species Gram-negative bacteria pathogenic Bacteremia without signs of Bacterial culture of blood. Ampicillin, uoroquinolone,
in both animals and humans. localizing infection and nonspecic Salmonella enteritis is diagnosed ciprooxacin, cefotaxime,
Salmonella typhi causes thypoid fever. signs of septicemia. GI presentation by positive stool cultures. Other ceftriaxone, or TMP-SMX for
Nontyphoid Salmonella species includes diarrhea or abdominal pain. localized disease is diagnosed by acute treatment. TMP-SMX or
cause infection in patients with AIDS. culture of CSF or aspirated uid. amoxicillin for maintenance
Transmitted person to person by treatment.
oralfecal route, and by infection in
animals such as chickens. Salmonella
gastroenteritis results from exposure to
infected pets or animal-derived
foodstuffs such as poultry or eggs.
HIV-infected patients are at risk for
Salmonella bacteremia with or without
GI disease.
Pneumocystis Infections
Pneumocystis carinii One of most common opportunistic Fever, dyspnea, a nonproductive Sputum induction, bronchoalveolar TMP-SMX or dapsone as rst-
infections in HIV infection. Most cough; 2% of patients develop lavage. Arterial blood gases show line treatment. Pentamidine or
common cause of pulmonary disease. spontaneous pneumothorax. hypoxia. LDH elevated. clindamycin as second-line
Without prophylaxis, occurs with therapy. TMP-SMX for
CD4+ count <200 L. prophylaxis.
Malignancies
Non-Hodgkins Rate of NHL is 73 times higher in Nonspecic symptoms of Biopsy of specimens or CNS lymphoma treated
lymphoma (NHL) HIV-infected individuals than in the unexplained fever, weight loss, cytological examination with radiation with poor
general population. Greater chance and night sweats. Elevated of tissue uid. CT scan of survival (3 mo.). Disease
of NHL with CD4+ count <50/L serum LDH. Localizing symptoms brain or abdomen. outside CNS treated
and in older white men. depend on site of tumor. with chemotherapy.
Caused by uncontrolled prolifer- Neurological decits if NHL Assess and treat for neutropenia
ation of lymphatic tissue, usually of the brain. NHL of GI tract secondary to chemotherapy.
arising in the lymph nodes, manifests with abdominal pain, Antiretroviral agents may
spleen, liver, and bone marrow. weight loss, or GI bleeding. enhance clinical response
Brain is the most common site Small-bowel lymphoma may lead to chemotherapy.
of involvement. In patients to obstructive jaundice and
with HIV disease, 80%90% small-bowel intussusception.
of the NHL is extranodal,
making lymph nodebased
tumors uncommon.
(continued )
6
696
Table 376
Opportunistic Infections and Malignancies Associated with HIV/AIDS (continued )
Types of Infections
Kaposis sarcoma (KS) Classic KS is a rare, unusual Seen in any tissue but most GI lesions are visualized by Treatment based on
neoplasm that usually affects often found in GI tract, mucous barium studies and are best immunological status and
older men of Jewish and membranes, lymph nodes, and evaluated endoscopically. symptoms. KS lesions are highly
Mediterranean ancestory; skin. Identied as patch, plaque, Histological examination of sensitive to radiation therapy.
it is different from KS of HIV and/or nodular lesions of any size, tissue biopsy to conrm Isolated KS lesions can be
infection, which is most frequently color or conguration on the trunk, the diagnosis. treated with cryotherapy or laser
seen in HIV-infected men, who arms, head, or neck. Lesions in surgery. Interferon-alpha with
have sex with men, and is the GI tract may be associated with antiretroviral agents may be
most common HIV-associated bleeding pain, weight loss, benecial, as may single agent or
malignancy. It is associated with and diarrhea. combination chemotherapy.
specic sexual practices and
geographic locations.
Cervical invasive cancer HIV-infected women have a 7-to-10 Early stages are asymptomatic and PAP smear to determine the Treatment of CIN and cervical
greater chance of developing usually identied by PAP smear. presence of abnormal cells, cancer is carbon dioxide laser
precancerous or cancerous cervical Vaginal bleeding, usually postcoital, visible lesions, or both. therapy, conization, cryosurgery,
lesions and a higher rate of recurrence is most common symptom. Recommended that HIV-infected or electrocautery. Treatment of
after cervical intraepithelial neoplasia Metrorrhagia and malodorous, women have a PAP smear twice invasive cancer depends on the
(CIN) excisions. Progression of CIN blood-tinged vaginal discharge in the rst year after diagnosis. stage of the disease and may
(cervical dysplasia) to carcinoma of the may be present. Advanced disease If both are negative then a yearly include surgery, radiation, or
cervix is slow in immunocompromised may cause pelvic, back or leg pain, PAP smear is recommended. chemotherapy
women. Incidence of AIDS-dening hematuria, rectal bleeding, If PAP smear is abnormal than a
cervical cancer appears to be higher in or bladder and bowel involvement. colposcopy is recommended.
women who are injecting substance
users, are black, and live in the southern
United States.
Sources: Ropka and Williams(1998) reference 13; Flaskerud and Ungvarski (1999) reference 10; Murphy and Flaherty (2003), reference 67.
labeled asymptomatic early in the course of the infection chemotherapy such as vincristine, radiation, surgery, and pro-
because they often experience symptoms of anxiety, fear, and cedures.83 Following a complete assessment, including a history
depression; (3) nurses are not necessarily good judges of and physical examination, an individualized pain management
patients symptoms, as they frequently underestimate the fre- plan should be developed to treat the underlying cause of the
quency and intensity of HIV signs and symptoms; however, pain, often arising from underlying infections associated with
following assessment, they can answer specic questions about HIV disease.88
a symptom, such as location, intensity, duration, etc.; (4) non- The principles of pain management in the palliative care of
adherence to treatment regimens is associated with greater fre- patients with AIDS are the same as for patients with cancer,
quency and intensity of symptoms; (5) greater frequency and and include regularity of dosing, individualization of dosing,
intensity of symptoms leads to lower quality of life; (6) symp- and using combinations of medications.27 The three-step guide-
toms may or may not correspond with physiological markers; lines for pain management as outlined by WHO should be used
and (7) patients use few self-care symptom management strate- for patients with HIV disease.89 This approach advocates for the
gies other than medication. selection of analgesics based on the severity of pain. For mild to
moderate pain, antiinammatory drugs such as NSAIDs or acet-
Pain Management. Pain management must become more aminophen are recommended. However, the use of NSAIDs in
integrated in the comprehensive care offered to patients with patients with AIDS requires awareness of toxicity and adverse
AIDS because nearly two thirds of patients with HIV/AIDS reactions because they are highly protein-bound, and the free
report increasing pain as the disease progresses.82 General esti- fraction available is increased in AIDS patients who are cachetic
mates of the prevalence of pain in HIV-infected individuals or wasted.83 For moderate to severe pain that is persistent, opi-
range between 25% and 80%, which is associated with psycho- oids of increasing potency are recommended, beginning with
logical and functional morbidity.83 Shofferman and Brody84 opioids such as codeine, hydrocodone, or oxycodone (each avail-
reported that more than half of the patients cared for in hos- able with or without aspirin or acetaminophen), and advancing
pice with advanced AIDS experienced pain. In a study by Bre- to more potent opioids such as morphine, hydromorphone
itbart and colleagues,85 only 8% of patients who reported severe (Dilaudid), methadone (Dolophine), or fentanyl either intra-
pain (score of 810 on a pain intensity scale) in an AIDS- venously or transdermally. In conjunction with NSAIDs and
patient cohort received a strong opioid, as recommended by opioids, adjuvant therapies also recommended are:83
the World Health Organization (WHO) pain-management
Tricyclic antidepressants, heterocyclic and noncyclic
guidelines. Cleeland and colleagues86 also reported signicant
antidepressants, and serotonin reuptake inhibitors
undermedication of pain in AIDS patients (85%), far exceeding
for neuropathic pain
the published reports of undertreated pain in cancer popula-
Psychostimulants to improve opioid analgesia and
tions. In a longitudinal study of 95 patients with AIDS, Frich
decrease sedation
and Borgbjerg87 reported that the overall incidence of pain was
Phenothiazine to relieve anxiety or agitation
88%, and 69% suffered constant moderate to severe pain that
Butyrophenones to relieve anxiety and delirium
interfered with daily living. The most common pain locations
Antihistamines to improve opioid analgesia and
were the extremities (32%), head (24%), upper GI tract (23%)
relieve anxiety, insomnia, and nausea
and lower GI tract (22%). Pain was associated with oppor-
Corticosteroids to decrease pain associated with an
tunistic infections, KS or lymphoma, as well as neuropathic
inammatory component or with bone pain
pain in the extremities. The number of pain localizations
Benzodiazepines for neuropathic pain, anxiety,
increased signicantly as death approached.
and insomnia
The inadequate assessment and treatment of pain often
occurs because of societal, practitioner, and patient barriers Caution is noted, however, with use of PIs because they
and limitations. For example, with regard to pain management, may interact with some analgesics. For example, Ritonavir has
society fears addiction to opioids and has not distinguished been associated with potentially lethal interactions with meperi-
between the legitimate and illegal use of drugs. Practitioners dine, propoxyphene, and piroxicam. PIs must also be used
may have inadequate knowledge and misconceptions about with caution in patients receiving codeine, tricyclic antidepres-
pain management, while patients often fear pain as suggesting sants, sulindac, and indomethacin to avoid toxicity. Further-
advanced disease and are reluctant to report pain, desiring to more, for patients with HIV disease who have high fevers, the
be perceived as good patients.32 increase in body temperature may lead to increased absorption
Pain syndromes in patients with AIDS are diverse in nature of transdermally administered fentanyl.90
and etiology. For patients with AIDS, pain can occur in more To insure appropriate dosing when changing the route of
than one site, such as pain in the legs (peripheral neuropathy administration of opioids or changing from one opioid to
reported in 40% of AIDS patients), which is often associated another, the use of an equianalgesic conversion chart is sug-
with antiretroviral therapy such as AZT, as well as pain in the gested. As with all patients, oral medications should be used if
abdomen, oral cavity, esophagus, skin, perirectal area, chest, possible, with round-the-clock dosing at regular intervals, and
joints, muscles, and headache.27 Pain is also related to HIV/ the use of rescue doses for breakthrough pain. Often, controlled-
AIDS therapies such as antiretroviral therapies, antibacterials, released morphine or oxycodone are effective drugs for patients
with chronic pain from HIV/AIDS. In the case of neuropathic uncommon in patients who are terminally ill. Furthermore,
pain, often experienced with HIV/AIDS, tricyclic antidepres- studies have demonstrated that although tolerance and physical
sants such as amitriptyline, or anticonvulsants such as Neu- dependence commonly occur, addiction (psychological
rontin can be very effective.27 However, the use of neuroleptics dependence) is rare and almost never occurs in individuals who
must be weighed against an increased sensitivity of AIDS do not have histories of substance abuse.83 However, it should be
patients to the extrapyramidal side effects of these drugs.83 If noted that a certain percentage of patients with HIV/AIDS will
the cause of pain is increasing tumor size, radiation therapy have a history of substance abuse, either past or current, that
can also be very effective in pain management by reducing needs to be recognized so that their pain can be managed appro-
tumor size, as well as the perception of pain. Tables 377 and priately, as well as other symptoms for which they are self med-
378 present the nonopiate analgesics for pain management in icating. Health care providers in palliative care are often
patients with AIDS and opioid analgesics for the management concerned with the administration of opioids to patients who
of mild to moderate pain and from moderate to severe pain in have a history of substance abuse, who are in methadone main-
patients with AIDS, respectively. tenance programs, or who currently are abusing drugs. As a
result, these patients often receive ineffective pain management.
Tolerance, Dependence, and Addiction. Physiological tolerance Consistent use of a standard pain scale and regular monitoring
refers to the shortened or diminished effect of a drug due to of drug consumption by one nurse and one physician can be
exposure to the drug, and, therefore, the need for increasing helpful in ongoing assessment and pain management because it
doses to maintain effect. In the case of opioids, tolerance to limits potential abuse. Oral administration of medications also
analgesic properties of the drug appears to be uncommon in the lowers abuse potential. Given that substance-abusing patients
clinical setting, while tolerance to adverse effects such as respira- have greater tolerance to morphine derivatives and benzodi-
tory depression, somnolence, and nausea is common and favor- azepines because of previous exposure to these drugs, increased
able. Most patients can remain on stable doses of opioids for dosage may be necessary for effective pain management, or the
prolonged periods of time. If an increase in opioid dosage is interval between doses should be shortened. Furthermore, the
needed, it is usually because of disease progression. Another dosages of medications should be carefully monitored to avoid
expected physiological response to opioids is physical depend- overdosing, given the possibility of hepatic failure in substance-
ence, which occurs after 3 to 4 weeks of opioid administration, abusing patients. Simultaneous use of agonists and antagonists
as evidenced by withdrawal symptoms after abrupt discontinu- are avoided in all populations because they provoke withdrawal
ation. If a drug is to be discontinued, halving the daily dose symptoms.
every 1 to 2 days until the dose is equivalent to 15 mg of mor-
phine will reduce withdrawal symptoms.32 Tolerance to opioids Alleviating Opioid Side Effects. Although opioids are extremely
does not imply addiction, as addiction is a compulsive craving effective in pain management for patients with HIV disease,
for a drug for effects other than pain relief and is extremely their common side effects must be anticipated and minimized.
Table 377
Nonopioid Analgesics for Pain Management in Patients with AIDS
Starting Dose Plasma Duration Half-life
Analgesic Nonopiate (mg/d) (hours) (hours) Comments
Aspirin 650 46 312 The standard for comparison among nonopioids.

GI toxicity. May not be as well tolerated as some
newer analgesics.
Ibuprofen 400600 48 34 Can inhibit platelet function.
Acetaminophen 650 46 24 Overdosage produces hepatic toxicity. Not
antiinammatory. Lack of GI and
platelet toxicity.
Choline magnesium 7001500 12 812 Believed to have less GI toxicity than other
trisalicylate NSAIDs. No effect on platelet aggregation.
Naproxen 250500 812 13 Lower incidence of side effects than other agents.
Indomethacin 2575 812 45 Available in sustained release in the United States.
COX-2 inhibitor: Celecoxib 100200 mg 35 11 Not used for patients <18 y. Maximum daily
q.d. or bid dose is 400 mg. Growing concern regarding
cardiac toxicities, especially with long term use.
Source: Portenoy (1997), reference 132.

Table 378
Opioid Analgesics for Mild to Moderate to Severe Pain in Patients with AIDS
Peak Plasma
Recommended Effect Duration Half-Life
Dose (mg) (hours) (hours) (hours) Comments
For Mild to Moderate Pain

Codeine (with or without 3060 PO 12 34 23 Metabolized to morphine; often
acetaminophen) used to suppress cough. When
Tylenol #2 acetaminophen is added, there is a
acetaminophen 300 mg ceiling dose of 4 g/d.
+ codeine 15 mg
Tylenol #3
acetaminophen 300 mg
+ codeine 30 mg
Tylenol #4
Acetaminophen 300 mg
+ codeine 60 mg
Hydrocodone (with 30 PO 12 36 24 When acetaminophen is added,
acetaminophen combinations there is a ceiling dose of 4 g/d.
in Lorcet, Lortab, Vicodin, others)
Oxycodone (with or without 2030 PO 12 36 23 Toxicity is the same as morphine.
acetaminophen) Used with acetaminophen for
Roxicodone (a single-entity moderate pain. Available as a single
oxycodone) agent for severe pain. Equianalgesic
Percoset (oxycodone to morphine when not combined
5 mg + acetaminophen 325 mg) with acetaminophen
Roxicet (oxycodone
5 mg + acetaminophen 500 mg)
Oxycodone (sustained 2040 PO 1 812 23
release)oxycodone SR
Oxycodone 2030 PO 34 812 23
(controlled release)OxyContin
For Moderate to Severe Pain

Morphine (immediate release) 2060 PO 12 36 23 Standard of comparison for the
10 IM, IV, SC 0.51 34 23 opioid analgesics. Constipation,
nausea, and sedation are common
side effects. Respiratory depression
is rare.
Morphine (controlled 2060 PO 34 812 23
release)MS Contin
Morphine (sustained 2060 PO 46 24 23 Kadian is only QD dosing.
release)Kadian, Oramorph SR
Hydromorphone (Dilaudid) 7.5 PO 12 36 23 Short half-life
Hydromorphone (sustained 1.5 IM, IV 0.51 34 23 Toxicities similar to other opioids
release)Palladone
Methadone (Dolophine) 20 PO 12 4 > 8 12 > 150 Requires close monitoring for
10 IM 0.51.5 4 > 8 12 > 150 toxicity due to long half-life and
careful titration.
Levorphanol (Levo-Dromoran) 4 PO 12 36 1215 Long half-life requiring careful
2 IM 0.51 36 1215 titration in the rst week
(continued )
Table 378
Opioid Analgesics for Mild to Moderate to Severe Pain in Patients with AIDS (continued )
Peak Plasma
Recommended Effect Duration Half-Life
Dose (mg) (hours) (hours) (hours) Comments
Fentanyl 712 Can be administered as a continuous IV

or SC infusion; 100 mcg/h is roughly
equianalgesic to morphine 4 mg/h
Fentanyl transdermal (Duragesic) 4872 1624 100 mcg transdermal system is
approximately equianalgesic to morphine
4 mg/h. Not suitable for rapid titration. If
patient has pain after 48 h, increase the
dose or change the patch every 48 h.
Fentanyl transmucosal (Actiq) 200 mcg 0.5 7 Unit is administered as a lozenge
(12 units) on a stick that is to be sucked.
q3h PRN Used for breakthrough pain as a
but no more rescue dose for cancer patients. Not
than 4 units/d. to be used with opioid-nave
The unit is to patients due to life-threatening
be sucked and hypoventilation. Recent research
not chewed. ndings suggest that the onset of
Redosing within effect is faster than oral morphine
a single pain and the same as IV morphine.
episode can
occur 15 min
after the previous
unit has been
completed or
30 min after
the start of the
previous unit.
Source: Portenoy (1997), reference 132.
In medically fragile populations, such side effects may also Myoclonus, treated with clonazepam (Klonopin),
result from other comorbid conditions rather than from opi- diazepam (Valium), and baclofen (Lioresal), or a
oid analgesia itself; therefore, a complete assessment is war- change in the opioid
ranted. Medications and treatments to alleviate opioid side Respiratory depression, prevented by starting at a
effects include: low dose in opioid-nave patients, and being aware
of relative potencies when changing opioids, as well
Nausea and vomiting, treated with prochlorperazine
as differences by routes of administration. Naloxone
(Compazine), metoclopramide (Reglan), haloperi-
(Narcan) may be administered to reverse respiratory
dol (Haldol), granisetron (Kytril), and ondansetron
depression but should be used with caution in
(Zofran). A change in the opioid may also
patients who are opioid tolerant because of the risk
be necessary.
of inducing a withdrawal state. Dilute one ampule
Constipation, treated by increasing ber in the diet,
of naloxone (0.4 mg) in 10 mL of normal saline and
stimulating cathartic drugs such as bisacodyl or
titrate to the patients respirations.83
senna, or hyperosmotic agents such as sorbitol
or lactulose
Sedation, treated by reducing the opioid in each Management of Other Symptoms Experienced with HIV Dis-
dose or decreasing the frequency, as well as the ease. For patients with HIV/AIDS, suffering occurs from the
ingestion of caffeine, and administration of dex- many symptoms experienced at the various stages of the illness.
troamphetamine or methylphenidate. Again, a Based on a sample of 1128 HIV-infected patients, Fantoni and
change in the opioid may be warranted. colleagues91 reported that the most commonly experienced
Confusion, treated by lowering the opioid dose, symptoms were fatigue (65%), anorexia (34%), cough (32%),
changing to a different opioid or Haldol and fever (29%). In a study to assess the predominant symptoms
Table 379
Selected Symptoms Associated with HIV/AIDS
Symptom Cause Presentation Interventions
Fatigue (asthenia) HIV infection Weakness Treat reversible causes.

Opportunistic infections Lack of energy Pace activities with rest
AIDS medications periods/naps.
Prolonged immobility Ensure adequate nutrition.
Anemia Use relaxation exercises and meditation.
Sleep disorders Take warm rather than hot showers
Hypothyroidism or baths.
Medications Use cool room temperatures.
Administer dextroamphetamine
10 mg/d PO.
Anorexia (loss of Metabolic alterations caused Diminished food intake Treat reversible causes.
appetite) and cachexia by cytokines and interleukin-1 Profound weight loss Consult with dietitian about
(wasting) Opportunistic infections choice of food.
Nutrient malabsorption Make food appealing by color
from intestines and texture.
Chronic diarrhea Avoid noxious smells at mealtime.
Depression Avoid fatty, fried, and strong-smelling
Taste disorders foods.
Offer small, frequent meals and
nutritious snacks.
Encourage patients to eat whatever
is appealing.
Provide high-energy, high-protein
liquid supplements.
Use appetite stimulants such as
megesterol acetate 800 mg/d PO
or dronabinol 2.5 mg PO qd or bid.
Testosterone administered by 5 mg
transdermal patch to increase weight
gain and muscle mass.
Fever (elevated Bacterial toxins Body temperature >99.5F Treat reversible causes.
body temperature) Viruses (oral), 100.5F (rectal), or Maintain uid intake.
Yeast 98.5F (axillary) Use loose clothing and sheets, with
Antigenantibody reactions Chills, rigor frequent changing.
Drugs Sweating, night sweats Avoid plastic bed coverings.
Tumor products Delerium Exceptionally high temperature may
Exogenous pyrogens Dizziness require ice packs or cooling blankets.
Dehydration Administer around-the-clock
antipyretics such as acetaminophen or
ASA, 325650 mg PO q68 h.
Dyspnea (shortness Bronkospasm Productive or Treat reversible causes.
of breath) and cough Embolism nonproductive cough Elevate bed to Fowlers or high
Effusions Crackles Fowlers position.
Pulmonary edema Stridor Provide abdominal splints.
Pneumothorax Hemoptysis Administer humidied oxygen therapy
Kaposis sarcoma Inability to clear secretions to treat dyspnea.
Obstruction Wheezing Use fans or open windows to keep
Opportunistic infections Tachypnea air moving for dyspnea.
Anxiety Gagging Remove irritants or allergens
Allergy Intercostal retractions such as smoke.
Mechanical or Areas of pulmonary dullness Teach pursed-lips breathing for patients
chemical irritants with obstructive disease.
(continued )
Table 379
Selected Symptoms Associated with HIV/AIDS (continued )
Anemia Anxiety Use frequent mouth care to decrease

discomfort from dry mouth.
Treat bronchospasm.
Suppress cough with dextromethor-
phan hydrobromide 1545 mg PO
q4 h PRN, or opioids such as
codeine 1560 mg
PO q4 h even if taking other opioids
for pain, or hydrocodone 510 mg PO
q46 h PRN, or morphine 520 mg
PO q4 h PRN (may be increased) to
relieve dyspnea, cough, and
associated anxiety.
For hyperactive gag reex use nebu-
lized lidocaine 5 mL of 2% solution
(100 mg) q34 h PRN.
Diarrhea Idiopathic HIV Flatulence Treat reversible causes.
enteropathy Multiple bowel Maintain adequate hydration.
Diet movements/day Replace electrolytes by giving
Bowel infections (bacteria, Cramps/colic Gatorade or Pedialyte.
parasites, protozoa) Hemorrhoids Give rice, bananas, or apple juice to
Chronic bowel inammation reduce diarrhea.
Medications Increase protein and calories.
Obstruction with Avoid dairy products, alcohol, caffeine,
overow incontinence extremely hot or cold foods, spicy
Stress or fatty foods.
Malabsorption Maintain dignity while toileting.
Provide ready access to bathroom
or commode.
Maintain good perianal care.
Administer medications such as
Lomotil 2.55.0 mg q46 h; Kapectolin
60120 mL q46 h (max 20 mg/d);
Imodium 24 mg q6 h (max 16 mg/d);
or aregoric (tincture of opium)
510 mL q46 h.
Insomnia Anxiety Early morning awakening Treat reversible causes.
(inability to fall Depression Nighttime restlessness Establish a bedtime routine.
asleep or stay asleep) Pain Fear Reduce daytime napping.
Medications Nightmares Avoid caffeinated beverages
Delirium and alcohol.
Sleep disorders such as Take a warm bath 2 h before bedtime.
sleep apnea Use relaxation techniques.
Excess alcohol intake Provide an environment conducive to
Caffeine sleep (dark, quiet, comfortable
temperature).
Administer anxiolytics such as benzo-
diazapines (use for <2 wk because of
dependency), antidepressants (helpful
over long term), or other sedatives
such as Benadryl.
Table 379
Selected Symptoms Associated with HIV/AIDS (continued )
Headache Infections such as Pain in one or more areas Treat reversible causes.
encephalitis, herpes zoster, of the head or over sinuses Suggest chiropractic manipulation.
meningitis, toxoplasmosis Provide message therapy.
Sinusitis Use relaxation therapy.
Apply TENS.
Use stepwise analgesia.
Administer corticosteroids to
reduce swellings around
space-occupying lesions.
Sources: Ropka and Williams (1998), reference 13; Unzarski and Flaskerud (1999), reference 10; Coyne et al. (2002), reference 133.
in 72 patients with AIDS, the most common symptoms were prayer (56%), massage (54%), needle acupuncture (48%), medi-
pain (97%), weakness (78%), and weight loss (53%).78 Based on a tation (46%), support groups (42%), visualization and imagery
sample of 207 patients with AIDS, Holzemer and colleagues92 (34%), breathing exercises (33%), spiritual activities (33%), and
also found that 50% of the participants experienced shortness of other exercise (33%).95 Clearly, patients with HIV disease seek
breath, dry mouth, insomnia, weight loss, and headaches. The complementary therapies to treat symptoms, slow the progres-
records of 50 men who died of AIDS between 1988 and 1992 indi- sion of the disease, and enhance their general well-being. Nurses
cated the distressing symptoms of dyspnea, diarrhea, confusion, knowledge, evaluation, and recommendations regarding com-
dementia, difculty eating, and swallowing. Therefore, care in plementary therapies are important aspects of holistic care.
the last month of life was often directed at the palliation of symp-
toms.21 Indeed, the last stage of HIV infection is often marked
by increasing pain, GI discomfort, and depression.10 Patients may o]
be suffering from inammatory or inltrative processes and Psychosocial Issues for Patients With HIV/AIDS
somatic and visceral pain. Neuropathic pain is commonly a and Their Families
result of the disease process or the side effect of medications93
Avis, Smith, and Mayer94 also reported, based on a sample of 92 Uncertainty is a chronic and pervasive source of psychological
HIV-positive men, that quality of life was more related to symp- distress for persons living with HIV disease, particularly as it
toms as measured by the Whalens HIV Symptom Index than relates to ambiguous symptom patterns, exacerbation and
CD4 counts or hemoglobin. With the myriad of symptoms expe- remissions of symptoms, selection of optimal treatment regi-
rienced by patients with HIV disease across the illness trajectory, mens, the complexity of treatments, and the fear of stigma and
health care practitioners need to understand the causes, presen- ostracism. Such uncertainty is linked with negative perceptions
tations, and interventions of common symptoms, as presented in of quality of life and poor psychological adjustment.96 However,
Table 379, to enhance the quality of life of patients. many practitioners focus on patients physical functioning and
performance status as the main indicators of quality of life,
Nonpharmacological Interventions for Pain and Symptom rather than on the symptoms of psychological distress such as
Management. Nonpharmacological interventions for pain and anxiety and depression.97,81 Farber and colleagues98 reported,
symptom management can also be effective in the care of based on a sample of 203 patients with HIV/AIDS, that positive
patients with HIV disease. Bed rest, simple exercise, heat or meaning of the illness was associated with a higher level of psy-
cold packs to affected sites, massage, transcutaneous electrical chological well-being and lower depressed mood, and con-
stimulation (TENS), and acupuncture can be effective physi- tributed more than problem-focused coping and social support
cal therapies with this patient population. Psychological inter- to predicting both psychological well-being and depressed
ventions to reduce pain perception and interpretation include mood. During the late stage of AIDS, minority women (n = 220)
hypnosis, relaxation, imagery, biofeedback, distraction, and expressed high levels of psychological disturbance on the Psychi-
patient education. In cases of refractory pain, nerve blocks and atric Symptom Index (PSI), which were signicantly related to
cordotomy are available neurosurgical procedures for pain their mothers reports of having non-HIV related medical condi-
management. Increasingly, epidural analgesia is an additional tions, spending time in bed during the past 2 weeks, having more
option that provides continuous pain relief.83 activity restrictions, and having difculty caring for her child due
The 10 most commonly used complementary therapies and to ill health.99 In a study of the problems and needs of HIV/AIDS
activities reported by 1106 participants in the Alternative Medical patients during the last weeks of life, Butters and colleagues100
Care Outcomes in AIDS study were aerobic exercise (64%), determined, based on the Support Team Assessment Schedule
(STAS), that symptom control, patient and family anxiety, spiri- Depression and Anxiety in Patients with HIV Disease
tual needs, and communication between patient and family were
their greatest needs. Furthermore, Friedland and colleagues101 Because AIDS is a life-threatening, chronic, debilitating illness,
identied the determinants of quality of life in a sample of 120 patients are at risk for such psychological disorders as depres-
individuals with HIV/AIDS. Income, emotional support, and sion and anxiety. Among persons living with HIV/AIDS, the
problem-oriented and perception-oriented coping were posi- prevalence of depression has been estimated at 10% to 25%,103
tively related to quality of life, while tangible support and and is characterized by depressed mood, low energy, sleep dis-
emotion-focused coping were negatively related. turbance, anhedonia, inability to concentrate, loss of libido,
Ragsdale and Morrow41 emphasized the importance of weight changes, and possible menstrual irregularities.104 It is
focusing on the psychosocial aspects of life in patients with also important to assess whether depressed patients are using
HIV/AIDS because patients reported a repetitive cycle of emo- alcohol, drugs, and opioids.
tional changes with slight physical changes. Disgurement, the Patients with HIV disease who are diagnosed with depres-
symptoms associated with the disease and its treatment, and sion should be treated with antidepressants that target their
the contagious nature of the disease add to the psychological particular symptoms. For example, tricyclic antidepressants are
distress associated with HIV/AIDS. indicated for anxious depression, insomnia, low daytime energy,
Nurses must also be cognizant of such issues as the experi- and neuropathic pain; selective serotonin reuptake inhibitors
ence of multiple losses, complicated grieving, substance abuse, (SSRIs) are indicated for lethargy, hopelessness, and hyper-
stigmatization, and homophobia, which contribute to patients somnia; and stimulants are indicated for fatigue, hypersom-
sense of alienation, isolation, hopelessness, loneliness, and nia, poor appetite, and improvement of cognitive function.105
depression. Such emotional distress often extends to the patients It is noted that monoamine oxidase inhibitors (MAOIs) may
family caregivers as they attempt to provide support and lessen interact with multiple medications used to treat HIV disease
the patients suffering, yet are often suffering from HIV disease and, therefore, should be avoided.
themselves. Reciprocal suffering is experienced by family care- Given that depression is a common symptom in patients
givers as well as patients, and there is the need to improve their with HIV/AIDS, research studies have also focused on other
quality of life through palliative care.102 factors that relate to depression in this patient population.
Schrimshaw106 examined whether the source of unsupportive
social interactions had differential main and interactive rela-
Psychosocial Assessment of Patients with HIV Disease tions with depressive symptoms among ethnically diverse
women with HIV/AIDS (n = 146). After controlling for demo-
Psychosocial assessment of patients with HIV disease is impor-
graphic variables, it was found that unsupportive social inter-
tant throughout the illness trajectory, particularly as the disease
actions with family had a major effect in predicting more
progresses and there is increased vulnerability to psychological
depressive symptoms, and that there was a signicant interac-
distress. Psychosocial assessment includes the following:
tion between unsupportive interactions from a lover/spouse
Past social, behavioral and psychiatric history, which and friends, which predicted high levels of depressive symp-
includes the history of interpersonal relationships, toms. Arrindell107 examined differential coping strategies, anx-
education, job stability, career plans, substance use, iety, depression and symptomatology among African American
preexisting mental illness, and individual identity women with HIV/AIDS (n = 30). The results indicated that the
Crisis points related to the course of the disease as majority of women used emotion-focused coping; however,
anxiety, fear, and depression intensify, creating a risk there were no main effects for coping strategies on psychologi-
of suicide cal distress and no signicant difference between symptomatol-
Life-cycle phase of individuals and families, which ogy and coping strategies. An inverse relationship was reported
inuences goals, nancial resources, skills, social between psychological distress and social support, with less dis-
roles, and the ability to confront personal mortality tress reported when women had nancial assistance from their
Inuence of culture and ethnicity, including knowl- family and friends. There was a relationship reported between
edge and beliefs associated with health, illness, dying, symptomatology and anxiety, with those who were asympto-
and death, as well as attitudes and values toward sex- matic reporting no anxiety.
ual behaviors, substance use, health promotion and Anxiety is often associated with the stresses of HIV, or may
maintenance, and health care decision-making result from the medications used to treat HIV disease, such as
Past and present patterns of coping, including anticonvulsants, sulfonamides, NSAIDs, and corticosteroids.107
problem-focused and/or emotion-focused coping Generalized anxiety disorder is manifested as worry, trouble
Social support, including sources of support, types falling asleep, impaired concentration, psychomotor agitation,
of supports perceived as needed by the patient/fam- hypersensitivity, hyperarousal, and fatigue.108
ily, and perceived benets and burdens of support The treatment for patients with anxiety is based on the
Financial resources, including health care benets, nature and severity of the symptoms and the coexistence of
disability allowances, and the eligibility for Medic- other mood disorders or substance abuse. Short-acting anxi-
aid/Medicare olytics, such as lorazepam (Ativan), and alprazolam (Xanax)
are benecial for intermittent symptoms, while buspirone patients spiritual values, needs, and religious perspectives is
(BuSpar), and clonazepam (Klonopin) are benecial for chronic important in understanding their perspectives regarding
anxiety.105 their illness and their perception and meaning of life and
For many patients experiencing psychological distress associ- its purpose, suffering, and eventual death. According to
ated with HIV disease, participation in therapeutic interventions Elkins and colleagues,112 spirituality is a way of being or
such as skills building, support groups, individual counseling, experiencing that comes about through an awareness of a
and group interventions using meditation techniques can pro- transcendent dimension and identifiable life values with
vide a sense of psychological growth and a meaningful way of regard to self, others, nature, and God. An understanding of
living with the disease.108110 Such interventions are particu- the patients relationship with self, others, nature, and God
larly helpful for patients with HIV/AIDS who may not have can inform interventions that promote spiritual well-being
disclosed their sexual orientation or substance-abusing his- and the possibility of a good death from the patients per-
tory to their families. Often, signicant stress is associated spective.
with sharing such information, particularly when such disclo- Patients living with and dying from HIV disease have
sures occur during the stage of advanced disease. However, the the spiritual needs of meaning, value, hope, purpose, love,
need for therapeutic communication and support from all acceptance, reconciliation, ritual, and affirmation of a rela-
health professionals caring for the patient and their family tionship with a higher being.105 Assisting patients to find
exists throughout the illness continuum. Furthermore, fear of meaning and value in their lives, despite adversity, often
disclosure of the AIDS diagnosis and stigmatization in the involves a recognition of past successes and their internal
community often raises concern in the family about the diag- strengths. Respectful behavior toward patients demonstrates
nosis stated on death certicates. Practitioners may therefore love and acceptance of the patient as a person. Encouraging
write a nonspecic diagnosis on the main death certicate and open communication between the patient and family is
sign section B on the reverse side to signify to the registrar gen- important to work toward reconciliation and the completion
eral that further information will be provided at a later date. of unfinished business.
Often many members of a single family are infected and
die because of the transmission of the disease to sexual part-
ners and through childbirth. In the homosexual community
9=
and substance-abusing community, multiple deaths have also
case study
resulted in complicated mourning. The anxiety, depression,
Will Stillers, a Patient with MAC
sadness, and loneliness associated with these multiple deaths
and unending experiences of loss must be recognized and sup- Will Stillers, a 28-year-old homosexual male, was admitted to
port offered. Community resources and referrals to HIV/AIDS the inpatient palliative care unit for fever, fatigue, anorexia,
support groups and bereavement groups are important in nausea and vomiting, and weight loss. He had 20 episodes of
emotional adjustment to these profound losses. liquid diarrhea each day. As a differential diagnosis, he was
tested for HIV disease. Findings indicated a CD4 count of
45 cells/mm3 and a VL of 142,000 mL, indicative of the
o] advanced stage of HIV disease. His laboratory work indicated
Spiritual Issues in AIDS anemia and an elevated alkaline phosphatase. Mycobacterium
avium intracellulare (MAC) was conrmed by biopsy with
The spiritual care of the patient and the ability of the commu- AFB stain. Physical examination revealed
nity to support patients with HIV/AIDS may be unique hepatosplenomegaly and inguinal lymphadenopathy.
opportunities for both personal and societal growth and tran- Will was begun on azithromycin and rifabutin to treat
scendence. Mellors and colleagues111 examined the relationship MAC, as well as on a highly active antiretroviral (HAART)
of self-transcendence and quality of life in a sample of 46 indi- regimen of one potent PI and two NRTIs, specifically riton-
viduals with HIV/AIDS. The results demonstrated that overall avir (PI), and zidovudine and didanosine (ddI)(both
self-transcendence for this sample was relatively high. Quality NRTIs) to treat his advanced stage of AIDS. Will had been
of life was higher than reported in previous research, yet those estranged from his mother and sister, who lived on the West
with disease progression, evident by the diagnosis of AIDS, had Coast. However, he had a very close friend, Carl, who
lower quality of life than those who were asymptomatic or symp- viewed himself as Wills guardian given that he had known
tomatic with CD4 counts greater than 200 cells/mm3. There was Will for many years, and his mother was friends with Wills
no signicant difference in self-transcendence between groups, mother when she lived in New York. Will lived with Carl
but those with AIDS were more inclined to accept death and and was considered a family member. After Wills infection
refrained from dwelling on the past or unmet dreams. There improved, he returned to Carls 4th-story walk-up. Will still
was a moderate positive correlation between self-transcendence had difficulty holding down food but ate small frequent
and quality of life. meals, which he prepared for Carl and himself. Wills only
As health professionals, assessment of patients spiritual interest was in cooking because he was trained as a chef. He
needs is an important aspect of holistic care. Learning about was very weak but enjoyed cooking as his creative outlet,
and viewed it as an opportunity to contribute to the regain his health. He thanked Carl for his unconditional
household. friendship and care. He said I feel that you are my older
The diarrhea improved with medications, but Will was brother whom I could always count onno matter what.
still too insecure to leave the house because he was more Members of the palliative care team were surprised at his sud-
comfortable having immediate access to a toilet. He still felt den death but also understood the uncertainty of living with
very weak and was also concerned about his ability to climb advanced AIDS. In a celebration of his life, the palliative care
stairs. Within the month, Will became more depressed and team brought Wills favorite foods from the restaurant where
isolated. Although a home health aide visited for a few hours he worked, and asked Wills family to join them to celebrate
each day, there was minimal verbal interaction between them. his loving spirit and his life. In remembrance, tears were shed
Will began to stay in bed for long periods of time during the because of the tragic death of this promising young man who
day. He wondered if he was ever going to recover but hoped had touched their hearts, yet the importance of unconditional
some day to get his own apartment and be well enough to love, caring presence, and the joys of everyday life, such as
work. Will as treated with an antidepressant and within sharing a meal, were reinforced by the message he left.
weeks his mood improved. His appetite increased and his o]
physician was encouraged by his response to the HAART
therapy. His physician discussed advance directives and Will As with many life-threatening illnesses, patients with AIDS
asked Carl to be his health care proxy, as Carl knew Wills may express anger with God. Some may view their illness as
wishes and preferences. a punishment or are angry that God is not answering their
Over the next 2 months, Wills quality of life improved prayers. Expression of feelings can be a source of spiritual
because he was free of opportunistic infections and, although healing. Clergy can also serve as valuable members of the pal-
unemployed, he kept busy with household activities. Carl and liative care team in offering spiritual support and alleviating
Will had a wide circle of friends, but unfortunately many spiritual distress. The use of meditation, music, imagery, poetry,
were also living with HIV/AIDS. Over the next 3 months, and drawing may offer outlets for spiritual expression and
three of their friends died. Will understood the fragility of his promote a sense of harmony and peace.
condition and was adherent to his medication regimen. How- In a grounded-theory study of hope in patients with
ever, night sweats, fever, and diarrhea returned, and he was HIV/AIDS, Kylma and colleagues113 found that patients had an
readmitted to the hospital within 6 months of his initial hos- alternating balance between hope, despair, and hopelessness
pitalization with an exacerbation of MAC and severe dehy- based on the possibilities of daily life. They experienced losses
dration. The palliative care team was asked for a consultation such as loss of joy, carefree time, safety, self-respect, potential
by the AIDS specialist. The advanced practice nurse devel- parenthood, privacy, and trust in self, others, systems, and
oped a very supportive relationship with Will and Carl. She God. However, there was hope as they received strength by see-
listened attentively to his fears and concerns and provided a ing their life from a new perspective, and an acceptance of the
caring presence that helped him to relax. They discussed his uncertainty of life and the value of life. Hope was described as
relationship with his mother and sister, and he asked the a basic resource in life and meant the belief that life is worth
nurse to call his sister and tell her about his hospitalization. living at the present and in the future, with good things still
Will was coming to terms with his diagnosis and was ready to to come. Despair meant losing grip, unable to take hold of
move beyond old hurts in his relationship with his family. anything, while hopelessness implied giving up in the face
Although he did not have a strong religious faith, Will asked of an assumably nonexistent future, which was the opposite of
for the chaplain to visit because he was trying to come to hope.
terms with his own suffering and the death of his friends. For all patients with chronic, life-threatening illness, hope
Over the next few weeks, Wills infection began to resolve, often shifts from hope that a cure will soon be found to hope
and the advanced practice nurse promised him that when he for a peaceful death with dignity, including the alleviation of
felt better, she would bring him a meal from his favorite soul pain and suffering, determining ones own choices, being in
food restaurant where he once worked. Wills sister and the company of family and signicant others, and knowing
mother asked to come to see him. On the day they arrived, that their end-of-life wishes will be honored. Often, the great-
Wills condition took an unexpected turn for the worse. With est spiritual comfort offered by caregivers or family for patients
Carl and his family at his side, Wills fever began to rise and he comes from active listening and meaningful presence by sit-
became delirious. Several tests were conducted to identify ting and hold their hands and knowing that they are not aban-
other potential sources of the infection, and other possible doned and alone.
reasons for the delirium. His symptoms were treated with Spiritual healing may also come from life review, as patients
Haldol and antipyretics. However, within the next day, Will are offered an opportunity to reminisce about their lives, reect
slipped into a coma and died. In a letter found at his bedside, on their accomplishments, reect on their misgivings, and for-
Will thanked his physicians and the members of the palliative give themselves and others for their imperfections. Indeed,
team for their care. He said that without their support, he such spiritual care conveys that even in the shadow of death,
never would have reconciled with his mother and sister. He there can be discovery, insight, the completion of relationships,
knew that his illness was advanced and did not expect to the experience of love of self and others, and the transcendence
of emotional and spiritual pain. Often, patients with AIDS, by individual the power of attorney regarding nancial matters
their example, teach nurses, family, and others how to tran- and care or treatment issues. Advance directives include the
scend suffering and how to die with grace and dignity. patients decisions regarding such life-sustaining treatments as
cardiopulmonary resuscitation, use of vasoactive drips to sus-
tain blood pressure and heart rate, dialysis, articial nutrition
o] and hydration, and the initiation or withdrawal of ventila-
Advanced Care Planning tory support. The signing of advance directives must be wit-
nessed by two individuals who are not related to the patient or
Advanced planning is another important issue related to end- involved in the patients treatment. Individuals who are men-
of-life care for patients with HIV/AIDS. Most patients with tally competent can revoke at any time their advance directives.
AIDS have not discussed with their physicians the kind of care If a patient is deemed mentally incompetent, state statutes may
they want at the end of life, although more gay men have allow the court to designate a surrogate decision-maker for the
executed an advance directive than injection-drug users or patient.
women.114 Nonwhite patients with AIDS report that they do
not like to talk about the care they would want if they were
very sick, and are more likely to feel that if they talk about o]
death, it will bring death closer. In contrast, white patients Palliative Care Through the Dying Trajectory
were more likely to believe that their doctor was an HIV/AIDS
expert and good at talking about end-of-life care, and recog- Death from AIDS is usually due to multiple causes, including
nize they have been very sick in the past, and that such discus- chronic infections, malignancies, neurological disease, malnu-
sions are important.114 According to Ferris and colleagues,115 trition, and multisystem failure.116 However, even for patients
health care providers can assist patients and families by (1) with HIV/AIDS for whom death appears to be imminent,
discussing the benets of health care and social support pro- spontaneous recovery with survival of several more weeks or
grams, unemployment insurance, workers compensation, months is possible. The terminal stage is often marked by peri-
pension plans, insurance, and union or association benets; (2) ods of increasing weight loss and deteriorating physical and
emphasizing the importance of organizing information and cognitive functioning.30 The general rule related to mortality is
documents so that they are easily located and accessible; (3) that the greater the cumulative number of opportunistic infec-
suggesting that nancial matters be in order, such as power of tions, illnesses, complications, and/or deviance of serological
attorney or bank accounts, credit cards, property, legal claims, or immunological markers in terms of norms, the less the sur-
and income tax preparation; (4) discussing advance directives vival time.27 Survival time is also decreased by psychosocial
or power of attorney for care and treatment, as well as decisions factors such as a decrease in physical and emotional support as
related to the chosen setting for dying; and (5) discussing the demands increase for the caregivers, feelings of hopelessness
patients wishes regarding their deathWhom does the patient by the patient, and older age (>39 years).117 In the terminal
want at the bedside? What rituals are important to the dying stage of HIV disease, decisions related to prevention, diagno-
patient? Does the patient wish an autopsy? What arrangements sis, and treatment pose ethical and clinical issues for both
does the patient want regarding the funeral services and burial? patients and their health care providers because they must
Where should donations in remembrance be sent? It is impor- decide on the value and frequency of laboratory monitoring,
tant to realize that these issues should be discussed at relevant use of invasive procedures, use of antiretroviral and prophy-
stages in the persons illness, in a manner that is both respectful lactic measures, and patients participation in clinical trails.27
to the patients wishes and strengths and that promotes the The dying process for patients with advanced AIDS is com-
patients sense of control over his or her life and death. monly marked by increasingly severe physical deterioration,
Health care providers must also understand the concept of leaving the patient bedbound, experiencing wasting, dyspnea
competency, a state in which the person is capable of taking at rest, and pressure ulcers. Ultimately, patients become
legal acts, consenting or refusing treatment, writing a will or dependent on others for care. Febrile states and changes in
power of attorney.115 In assessing the patients competency, mental status often occur as death becomes more imminent.
the health provider must question whether the decision maker Maintaining the comfort and dignity of the patients becomes
knows the nature and effect of the decision to be made and a nursing priority. Symptomatic treatments, including pain
understands the consequences of his or her actions, and deter- management, should be continued throughout the dying pro-
mine if the decision is consistent with an individuals life his- cess, since even obtunded patients may feel pain and other
tory, lifestyle, previous actions, and best interests.115 symptoms.
When an individual is competent, and in anticipation of The end of life is an important time for individuals to
the future loss of competency, he or she may initiate advance accept their own shortcomings and limitations and differences
directives such as a living will and/or the designation of a with signicant others so that death may be accepted without
health care proxy, who will carry out the patients health care physical, psychosocial, and spiritual anguish.31 At the end of
wishes or make health care decisions in the event that the life, patients with AIDS may have a desire for hastened death.
patient becomes incompetent. The patient may also give an Pessin,118 based on a sample of 128 terminally ill patients with
AIDS who were receiving palliative care, found that there was to others; loss of nancial security through possible discrimi-
a signicant association between desire for a hastened death nation and increasing physical disability; and loss of relation-
and cognitive impairment, with memory impairment provid- ships through possible abandonment, self-induced isolation,
ing an independent and unique contribution to desire for has- and the multiple deaths of others from the disease.122 In a
tened death. Curtis and colleagues119 also examined the desire study of AIDS-related grief and coping with loss among HIV-
of AIDS patients for less life-sustaining treatment as associ- positive men and women (n = 268), Sikkema and colleagues123
ated with the medical futility rationale. It was reported that reported that the severity of grief reaction to AIDS-related
61% (n = 35) of patients with advanced AIDS accept the med- losses was associated with escape-avoidance and self-controlling
ical futility rationale as it may apply to their medical care at the coping strategies, the type of loss, depressive symptoms, and
end of life, including the use of mechanical ventilation. How- history of injection drug use. For health care professionals,
ever, because 26% (n = 15) thought the medical futility rationale each occurrence of illness may pose new losses and heighten
was probably acceptable and 10% (n = 5) said it was denitely the patients awareness of his or her mortality. Each illness
not acceptable, clinicians invoking the medical futility ration- experience is therefore an opportunity for health professionals
ale should consider the diversity of these patient attitudes toward to respond to cues of the patients in addressing their concerns
care at the end of life. Through an interdisciplinary approach to and approaching the subject of loss, dying, and death. Given
care, health professionals can assist patients with the follow- that grief is the emotional response to loss, patients dying
ing: reducing their internal conicts, such as fears about the from AIDS may also manifest the signs of grief, which include
loss of control, which can be related to a desire for hastened feelings of sadness, anger, self-reproach, anxiety, loneliness,
death; making end-of-life decisions regarding medical treat- fatigue, shock, yearning, relief, and numbness; physical sensa-
ments that are consistent with their values, wishes, and prefer- tions such as hollowness in the stomach, tightness in the chest,
ences; promoting the patients sense of identity; supporting oversensitivity to noise, dry mouth, muscle weakness, and loss
the patient in maintaining important interpersonal relation- of coordination; cognitions of disbelief, confusion; and behav-
ships; and encouraging patients to identify and attempt to ior disturbances in appetite, sleep, social withdrawal, loss of
reach meaningful though limited goals. interest in activities, and restless overactivity.124
Because palliative care also addresses the needs of family, it Upon the death of the patient, the patients family and sig-
is important to consider the vulnerability of family members nicant others enter a state of bereavement, or a state of hav-
to patients health problems at the end of life. In a study of the ing suffered a loss, which is often a long-term process of
health status of informal caregivers (n = 76) of persons with adapting to life without the deceased.124 Family and signicant
HIV/AIDS, Flaskerud and Lee120 found that caregiver distress others may experience signs of grief, including a sense of pres-
regarding a patients symptoms, anxiety, and education was ence of the deceased, paranormal experiences or hallucina-
related to depressive symptoms and that depressive symp- tions, dreams of the deceased, a desire to have cherished
toms, anger, and functional status of patients with AIDS were objects of the deceased, and to visit places frequented by the
related to poorer physical health of informal caregivers. There- deceased. The work of grief is a dynamic process that is not
fore, members of the palliative care team can provide much- time-limited and predictable.125 It may be that those left behind
needed assistance not only to patients but their families. never get over the loss but, rather, nd a place for it in their
As illness progresses and death approaches, health profes- life and create through memory a new relationship with their
sionals can encourage patients and loved ones to express their loved one.
fears and end-of-life wishes. Encouraging patients and fami- Families and partners of patients with AIDS may experience
lies to express such feelings as I love you, I forgive you, disenfranchised grief, dened as the grief that persons experi-
Forgive meI am sorry, Thank you, and Good-bye is ence when they incur a loss that is not openly acknowledged,
important to the completion of relationships.121 Peaceful publicly mourned, or socially supported.126 Support is not only
death can also occur when families give the patient permission important in assisting families in the tasks of grieving, but is
to die and assure them that they will be remembered.6 also important for nurses who have established valued rela-
tionships with their patients. Indeed, disenfranchised grief
may also be experienced by nurses who do not allow them-
o] selves to acknowledge their patients death as a personal loss,
Loss, Grief, and Bereavement for Persons or who are not acknowledged by others, such as the patients
with HIV/AIDS and Their Survivors family or even professional colleagues, for having suffered
a loss.
Throughout the illness trajectory, patients with HIV disease For all individuals who have experienced a loss, Worden127
experience many losses: a sense of loss of identity as they has identied the tasks of grieving as (1) accepting the reality
assume the identity of a patient with AIDS; loss of control over of the death; (2) experiencing the pain of grief; (3) adjusting to
health and function; loss of roles as the illness progresses; loss a changed physical, emotional, and social environment in
of body image due to skin lesions, changes in weight, and which the deceased is missing; and (4) nding an appropriate
wasting; loss of sexual freedom because of the need to change emotional place for the person who died in the emotional life
sexual behaviors to maintain health and prevent transmission of the bereaved.
To facilitate each of Wordens tasks, Mallinson125 recom- and compassionate nursing care, patients with AIDS can achieve
mends the following nursing interventions: a sense of inner well-being even at death, with the potential to
make the transition from life as profound, intimate, and pre-
Accept the reality of death by speaking of the loss
cious an experience as their birth.121
and facilitating emotional expression.
Work through the pain of grief by exploring the
meaning of the grief experience.
Adjust to the environment without the deceased by references
acknowledging anniversaries and the experience of
loss during holidays and birthdays; help the 1. Sepkowitz A. AIDSThe rst 20 years. N Engl J Med 2001;344:
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abilities to conduct their daily lives.
346:710711.
Emotionally relocate the deceased and move on 3. Selwyn P, Forstein M. Overcoming the false dichotomy of cura-
with life by encouraging socialization through for- tive vs palliative care for late-stage HIV/AIDS: Let me live the
mal and informal avenues. way I want to live, until I cant. JAMA 2003;90:806814.
The complications of AIDS-related grief often come from 4. George RJ. Palliation in AIDS: where do we draw the line? Geni-
tourinary Med 1991;67:8586.
the secrecy and social stigma associated with the disease.128
5. Knaus W, et al. A controlled trial to improve care for seriously ill
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38o] Kenneth L. Kirsh, Peggy Compton, and Steven D. Passik
Caring for the Drug-Addicted

Patient at the End of Life
Thank you for doctoring my brother. No one else would take care of him.Brother of a dying cancer
patient who had a comorbid addiction problem, requiring extensive management and unorthodox
doses of opioid analgesics. At the end of life, the patient was able to go hunting and spend quality
time with his family.
Key Points Substance use disorders are a consistent phenomenon in the

Identifying addiction in patients with advanced disease is not United States, with estimated base rates of 6% and 15%.14 This
an easy task, and old conceptions of addiction such as tolerance prevalence of drug abuse certainly touches medically ill patients
and dependence need to be reexamined. and can negatively inuence how pain is treated. Because of
Patients with advanced disease and comorbid addiction are these issues and despite the fact that national guidelines exist
difcult to manage but can be successfully treated with careful for the treatment of pain disorders such as cancer, pain con-
documentation and planning. tinues to be undertreated, even at the end of life.57 In cancer,
Remember that the patient with advanced disease and comorbid approximately 40% to 50% of patients with metastatic disease
addiction has two diseases that need treatment: one of drug and 90% of patients with terminal cancer or other advanced
addiction and one of chronic pain. diseases are reported to experience unrelieved pain.57 Fur-
thermore, inadequate treatment of cancer pain is an even
greater possibility if the patient is a member of an ethnic minor-
ity, female, elderly, a child, or a substance abuser.8 Thus, for
multicultural patients, we sometimes have conicting multi-
ple biases in pain treatment that can lead to poor manage-
ment, mutual suspicion and alienation, and suffering unless
these biases are adequately addressed.
o]
Incidence of Substance Use Disorders in Patients
with Advanced Disease
Although few studies have been conducted to evaluate the epi-

demiology of substance abuse in patients with advanced illness,
substance use disorders appear to be relatively rare within the
tertiary-care population with cancer and other advanced dis-
eases. Findings from a consultations review performed by the
Psychiatry Services at Memorial Sloan-Kettering Cancer Cen-
ter revealed that requests for management of issues related to
substance abuse consisted of only 3% of the consultations.9,10
While the incidence of substance use disorders is much
lower in patients with advanced disease than in society at
large, in community-based medical populations, and emer-
gency medical departments, this may not represent the true
prevalence in the advanced illness spectrum overall. Institu-
tional biases or a tendency for patients underreporting in
713
tertiary-care hospitals may be reective of the relatively low between illicit drugs and medications prescribed as part of the
prevalence of substance abuse among advanced patients. patients treatment can be dangerous. Continuous substance
Social forces may also inhibit patients reporting of drug use abuse may alienate or weaken an already tenuous social sup-
behavior. Many drug abusers are of lower socioeconomic port network that is crucial for alleviating the chronic stressors
standing and feel alienated from the health care system, and, associated with advanced disease and its treatment. Therefore,
therefore, may not seek care in tertiary-care centers. Further- a history of substance abuse can impede treatment and pain
more, those who are treated in these centers may not acknowl- management and increase the risk of hastening morbidity and
edge drug abuse for fear of stigmatization.911 Additionally, mortality among advanced patients, which can only be allevi-
minority patients are treated in such settings more often than ated by a therapeutic approach that addresses drug-taking
are Caucasians. behavior while expediting the treatment of the malignancy
and distressing symptoms, as well as addiction.11
When assessing drug-taking behaviors in the patient with
o] advanced disease, issues exist that increase the difculty in
Issues in Dening Abuse and Addiction arriving at a diagnosis of abuse or addiction. These issues
in the Medically Ill include the problem of undertreatment of pain, sociocultural
inuences on the denition of aberrancy in drug-taking, and
It is difcult to dene substance abuse and addiction in the importance of cancer-related variables.9,10
patients with advanced illness, since the denitions of both
terms have been adopted from addicted populations without Pseudoaddiction
medical illness. Furthermore, the pharmacological phenom-
ena of tolerance and physical dependence are commonly con- Various studies provide compelling evidence that pain is
fused with abuse and addiction. The use of these terms is so undertreated in populations with advanced disease.57 Clinical
strongly inuenced by sociocultural considerations that it may experience indicates that the inadequate management of symp-
lead to confusion in the clinical setting. Therefore, the clari- toms and related pain may be the motivation for aberrant
cation of this terminology is necessary to improve the diagno- drug-taking behaviors. Pseudoaddiction is the term used to
sis and management of substance abuse when treating patients depict the distress and drug-seeking that can occur in the con-
with advanced disease.10 text of unrelieved pain, such as similar behaviors in addicts.12
Substance abuse concentrates on the psychosocial, physi- The main factor of this syndrome is that sufcient pain relief
cal, and vocational harm that occurs from drug-taking, which eliminates aberrant behaviors.
makes identifying drug-taking behaviors more difcult in The potential for pseudoaddiction creates a challenge for
patients with advanced illness who are receiving potentially the assessment of a known substance abuser with an advanced
abusable drugs for legitimate medical purposes. In contrast, illness. Clinical evidence indicates that aberrant behaviors
substance dependence emphasizes chronicity, and includes the impelled by unrelieved pain can become so dramatic in this
dimensions of tolerance and physical dependence. Due to the population that some patients appear to return to illicit drug
possibility that patients may develop these effects due to ther- use as a means of self-medication. Others use more covert pat-
apeutic drug use, it is inapplicable to use this terminology in terns of behavior, which may also cause concerns regarding
the medically ill. Not only does the existing nomenclature the possibility of true addiction. While it may not be obvious
complicate the effort to distinguish the drug-taking behaviors that drug-related behaviors are aberrant, the meaning of these
of patients with advanced disease that are appropriately behaviors may be difcult to discern in the context of unre-
treated with potentially abusable drugs, it also impedes the lieved symptoms.9,10
communication that is fundamental for proper pain manage-
ment and medical care.9,10 Distinguishing Aberrant Drug-Taking Behaviors
Theoretical Problems in the Diagnosis Whereas abuse is dened as the use of an illicit drug or a pre-
of Substance Use Disorders scription drug without medical indication, addiction refers to
the continued use of either type of drug in a compulsive man-
Since substance abuse is increasingly widespread in the popu- ner regardless of harm to the user or others. However, when a
lation at large, patients with advanced disease who have used drug is prescribed for a medically diagnosed purpose, less
illicit drugs are more frequently encountered in medical set- assuredness exists as to the behaviors that could be deemed
tings. Illicit drug use, actual or suspected misuse of prescribed aberrant, thereby increasing the potential for a diagnosis of
medication, or actual substance use disorders create the most drug abuse or addiction. Although it is difcult to disagree
serious difculties in the clinical setting, complicating the with the aberrancy of certain behaviors, such as intravenous
treatment of pain management. However, the management of injection of oral formulations, various other behaviors are less
substance abuse is fundamental to adherence to medical ther- blatant, such as a patient experiencing unrelieved pain who is
apy and safety during treatment. Also, adverse interactions taking an extra dose of prescribed opioids.9,10
Caring for the Drug-Addicted Patient at the End of Life 715
The ability to categorize these questionable behaviors as 9=

apart from social or cultural norms is also based on the case study
assumption that certain parameters of normative behavior A 40-Year-Old Woman with Thymoma and
exist. Although it is useful to consider the degree of aber- Borderline Personality Disorder
rancy of a given behavior, it is important to recognize that
A 40-year-old woman with thymoma and borderline person-
these behaviors exists along a continuum, with certain
ality disorder, chronic pain, and anxiety was angry and feared
behaviors being less aberrant (such as aggressively requesting
abandonment by her psycho-oncologist while he was on
medication) and other behaviors are more aberrant (such as
vacation. Her covering physician gave her a prescription of
injection of oral formulations). Empirical data defining
80 alprazolam tablets on the Friday before the Monday of the
these parameters does not exist regarding prescription drug
psycho-oncologists expected return. The patient impulsively
use (Table 381). If a large portion of patients were found to
altered the prescription so that, instead of reading 80
engage in a certain behavior, it may be normative, and judg-
tablets, it read 180 tablets. The alteration was detected by a
ments regarding aberrancy should be influenced accord-
pharmacist, who reported it back to her medical team. In the
ingly.9,10
context of the patients previously uneventful use of the med-
The importance of social and cultural norms also raises the
icine, her psychiatric diagnosis, and the therapists vacation, it
possibility of bias in the determination of aberrancy. A clini-
was agreed that the patients behavior represented an expres-
cians willingness to classify a questionable drug-related
sion of the psychodynamics of abandonment and a self-
behavior as aberrant when performed by a member of a cer-
defeating expression of rage at the therapist. It was dealt with
tain social or ethnic group may be inuenced by bias against
in detail in her psychotherapy.
that group. Based on clinical observation, this type of preju-
o]
dice has been found to be common in the assessment of drug-
related behaviors of patients with substance abuse histories.
Regardless if the drug-abuse history was in the past or present, Disease-Related Variables
questionable behaviors by these patients may immediately be
labeled as abuse or addiction. The possibility of bias in the Changes caused by progressive diseases, such as cancer, also
assessment of drug-related behaviors also exists for patients challenge the principal concepts used to dene addiction.
who are members of racial or ethnic minority groups different Alterations in physical and psychosocial functioning caused by
from that of the clinician.9,10 The following case study illus- advanced illness and its treatment may be difcult to distin-
trates the point that aberrant behaviors do not have a univer- guish from the morbidity associated with drug abuse. In par-
sal interpretation (including the illegal and obviously ticular, alterations in functioning may complicate the ability to
worrisome ones) and must be understood in the context of the evaluate a concept that is vital to the diagnosis of addiction:
patients care. use despite harm. For example, discerning the questionable
behaviors can be difcult in a patient who develops social
withdrawal or cognitive changes after brain irradiation for
metastases. Even if diminished cognition is clearly related to
Table 381
Sample Behaviors More or Less Likely pain medication used in treatment, this effect might only
To Indicate Aberrancy reect a narrow therapeutic window rather than the patients
use of analgesic to acquire these psychic effects.9,10
Less Indicative of Aberrancy More Indicative of Aberrancy To accurately assess drug-related behaviors in patients with
Drug hoarding during Prescription forgery advanced disease, explicit information is usually required
periods of reduced symptoms regarding the role of the drug in the patients life. Therefore,
Acquisition of similar drugs Concurrent abuse of related the presence of mild mental clouding or the time spent out of
from other medical sources illicit drugs bed may have less meaning than other outcomes, such as non-
Aggressive complaining about Recurrent prescription losses compliance with primary therapy related to drug use, or behav-
the need for higher doses iors that threaten relationships with physicians, other health
care professionals, and family members.9,10
Unapproved use of the drug Selling prescription drugs
to treat another symptom
Unsanctioned dose escalation Multiple unsanctioned dose Appropriate Denitions of Abuse and
one or two times escalations Addiction for Advanced Illness
Reporting psychic effects not Stealing or borrowing
intended by the clinician another patients drugs A more appropriate denition of addiction would exemplify
that it is a chronic disorder characterized by the compulsive
Requesting specic drugs Obtaining prescription drugs
drugs from nonmedical use of a substance resulting in physical, psychological, or social
sources harm to the user and continued use despite the harm.13
Although this denition is not without fault, it emphasizes
that addiction is essentially a psychological and behavioral of the sociocultural group of which the patient is a member. In
syndrome.9,10 addition to ethnic orientation, attention must also focus on
A differential diagnosis should also be considered if ques- other sociocultural factors such as age, gender, sexual orienta-
tionable behaviors occur during pain treatment. A true addiction, income, education, geographic location, and level of
tion (substance dependence) is only one of many possible acculturation.18 Ascribing certain cultural characteristics to all
interpretations. A diagnosis of pseudoaddiction should also be patients of a particular minority group may lead to stereotyp-
taken into account if the patient is reporting distress associ- ing, alienating patients, and compromising treatment effec-
ated with unrelieved symptoms. Impulsive drug use may also tiveness.19 While the perfect scenario would be to accurately
be indicative of another psychiatric disorder, diagnosis of understand all of the possible cultural issues that inuence the
which may have therapeutic implications. On occasion, aber- patient within the context of his or her life circumstances, this
rant drug-related behaviors appear to be causally remotely is difcult and may be impractical.1,18 Therefore, it is particu-
related to a mild encephalopathy, with perplexity concerning larly important to respond to cultural needs in the treatment
the appropriate therapeutic regimen. On rare occasions, ques- of substance abuse, because sociocultural factors greatly effect
tionable behaviors imply criminal intent. These diagnoses are the manifestation of the disease. Consequently, clinicians must
not mutually exclusive.9,10 often acclimate their therapeutic approaches to accommodate
Varied and repeated observations over a period of time may the patients sociocultural orientation.18
be necessary to categorize questionable behaviors properly. Per-
ceptive psychiatric assessment is crucial and may require evalu- Risks in Patients with Current or Remote
ation by consultants who can elucidate the complex interactions Histories of Drug Abuse
among personality factors and psychiatric illness. Some patients
may be self-medicating symptoms of anxiety, depression, There is a lack of information regarding the risk of abuse or
insomnia, or problems of adjustment (such as boredom due to addiction during or subsequent to the therapeutic administra-
decreased ability to engage in usual activities and hobbies). Yet tion of potentially abusable drugs to medically ill patients with a
others may have character pathology that may be the more current or remote history of abuse or addiction.9 The possibility
prominent determinant of drug-taking behavior. Patients with of successful long-term opioid therapy in patients with cancer
borderline personality disorders, for example, may impulsively or chronic nonmalignant pain has been indicated by anecdotal
use prescription medications that regulate inner tension or reports, particularly if the abuse or addiction is remote.2022
improve chronic emptiness or boredom and express anger at Since it is commonly accepted that the likelihood of aber-
physicians, friends, or family. Psychiatric assessment is vitally rant drug-related behavior occurring during treatment for
important for both the population without a prior history of medical illness will be greater for those with a remote or cur-
substance abuse and the population of known substance rent history of substance abuse, it is reasonable to consider the
abusers who have a high incidence of psychiatric comorbidity.14 possibility of abuse behaviors occurring when using different
therapies. For example, while no clinical evidence exists to
Cultural Issues in the Treatment of
Substance Use Disorders
Table 382
As noted earlier, cancer pain continues to be grossly under- Basic Principles for Prescribing Controlled Substances to
treated despite the availability of guidelines for its clinical Patients with Advanced
management, with patients who are members of an ethnic Illness and Issues of Addiction
minority or substance abusers having a greater risk of inade-
quate treatment of cancer pain.57 In fact, various studies have Choose an opioid based on around-the-clock dosing.
documented that minority patients receive insufcient pain Choose long-acting agents when possible.
treatment when compared to nonminority patients when As much as possible, limit or eliminate the use of short-
being treated for pain caused by a variety of sources.1517 Since acting or breakthrough doses.
minority patients with advanced illness are undertreated for Use nonopioid adjuvants when possible, and monitor for
pain, they may be at greater risk of being misdiagnosed if compliance with those medications.
exhibiting behaviors of pseudoaddiction. Use nondrug adjuvants whenever possible (e.g., relaxation
Recently, more attention has been given to the signicant techniques, distraction, biofeedback, TNS, communication
inuence that age, gender, and ethnicity have on the issues and about thoughts and feelings of pain).
treatment of substance abuse. Certain issues must be considered If necessary, limit the amount of medication given at any one
when implementing substance abuse treatment with the minor- time (i.e., write prescriptions for a few days worth or a
ity patient who is suspected of having a substance use disorder.18 weeks worth of medication at a time)
First and foremost, it must be recognized that immense Use pill counts and urine toxicology screens as necessary.
diversity exists within the different sociocultural groups them- If compliance is suspect or poor, refer to an
selves. Any given minority patient may possess beliefs, values, addictions specialist.
or drug-taking behaviors that greatly differ from the majority
support that the use of short-acting drugs or the parenteral The most effective team may include a physician with expert-
route is more likely to cause questionable drug-related behav- ise in pain/palliative care, nurses, social workers, and, when
iors than other therapeutic strategies, it may be prudent to possible, a mental health care provider with expertise in the
avoid such therapies in patients with histories of drug abuse.9 A area of addiction medicine.10,25
basic set of principles pertaining to prescribing controlled sub-
stances to this patient population is presented in Table 382. Assessment of Substance Use History
Summary of Issues In an effort to not offend, threaten, or anger patients, clini-

cians many times avoid asking patients about drug abuse.
Clinicians should understand that essentially any drug that There is also often the expectation that patients will not answer
acts upon the central nervous system or any route of adminis- truthfully. However, obtaining a detailed history of duration,
tration has the potential to be abused. Therefore, a more com- frequency, and desired effect of drug use is vital. Adopting a
prehensive approach that recognizes the biological, chemical, nonjudgmental position and communicating in an empa-
social, and psychiatric aspects is necessary to effectively man- thetic and truthful manner is the best strategy when taking
age patients with substance abuse histories. Using this strategy patients substance abuse histories.11,25
extends beyond merely avoiding certain drugs or routes of In anticipating defensiveness on the part of the patient, it
administrationit also affords practical means to manage can be helpful for clinicians to mention that patients often
risk during cancer treatment.9 misrepresent their drug use for logical reasons, such as stigma-
tization, mistrust of the interviewer, or concerns regarding
fears of undertreatment. It is also wise for clinicians to explain
o] that in an effort to keep the patient as comfortable as possible,
Clinical Management of Advanced-Disease Patients by preventing withdrawal states and prescribing sufcient
with Substance Use Histories medication for pain and symptom control, an accurate account
of drug use is necessary.11,25
The most challenging issues in caring for patients with The use of a careful, graduated-style interview can be bene-
advanced disease typically arise from patients who are actively cial in slowly introducing the assessment of drug abuse. This
abusing alcohol or other drugs. This is because patients who approach begins with broad and general inquiries regarding the
are actively abusing drugs experience more difculty in man- role of drugs in the patients life, such as caffeine and nicotine,
aging pain.23 Patients may become caught in a cycle where and gradually proceeds to more specic questions regarding
pain functions as a barrier to seeking treatment for addiction illicit drugs. This interview style can also assist in discerning any
with another addiction, possibly complicating treatment for coexisting psychiatric disorders, which can signicantly con-
chronic pain.24 Also, since pain is undertreated, the risk of tribute to aberrant drug-taking behavior. Once identied, treat-
bingeing with prescription medications and or other substances ment of comorbid psychiatric disorders can greatly enhance
increases for drug-abusing patients.23 management strategies and decrease the risk of relapse. 11,25
General Guidelines Setting Realistic Goals for Therapy
The following guidelines can be benecial, whether the patient The rate of recurrence for drug abuse and addiction is high.
is actively abusing drugs or has a history of substance abuse. The The stress associated with advanced illness and the easy avail-
principles outlined assist clinicians in establishing structure, ability of centrally acting drugs increases this risk. Therefore,
control, and monitoring of addiction-related behaviors, which total prevention of relapse may be impossible in this type of
may be helpful and necessary at times in all pain treatment.25 setting. Gaining an understanding that compliance and absti-
Recommendations for the long-term administration of nence are not realistic goals may decrease conicts with staff
potentially abusable drugs, such as opioids, to patients with a members in terms of management goals. Instead, the goals
history of substance abuse are based exclusively on clinical might be perceived as the creation of a structure for therapy
experience. Research is needed to ascertain the most effective that includes ample social/emotional support and limit-setting
strategies and to empirically identify patient subgroups who to control the harm done by relapse.11,25
may be most responsive to different approaches. The following There may be some subgroups of patients who are unable
guidelines broadly reect the types of interventions that might to comply with the requirements of therapy due to severe sub-
be considered in this clinical context.10,25 stance use disorders and comorbid psychiatric diagnoses. In
these instances, clinicians must modify limits on various occa-
Multidisciplinary Approach sions and endeavor to develop a greater variety and intensity
of supports. This may necessitate frequent team meetings and
Pain and symptom management is often complicated by vari- consultations with other clinicians. However, pertinent expec-
ous medical, psychosocial, and administrative issues in the tations must be claried and therapy that is not successful
population of advanced patients with a substance use disorder. should be modied.11,25
Evaluation and Treatment of Comorbid doses daily to obtain sustained analgesia. Although patients
Psychiatric Disorders who are receiving methadone maintenance for treatment for
opioid addiction can be administered methadone as an anal-
Extremely high comorbidity of personality disorders, depres- gesic beyond the guidelines of the addiction treatment pro-
sion, and anxiety disorders exist in alcoholics and other patients gram, this usually necessitates a substantial modication in
with substance abuse histories.14 The treatment of depression therapy, including dose escalation and multiple daily doses.11,25
and anxiety can increase patient comfort and decrease the risk From a pharmacological stance, the management of such a
of relapse or aberrant drug-taking.11,25 change does not pose difcult issues. It can, however, create
substantial stress for the patient and clinicians involved in the
Preventing or Minimizing Withdrawal Symptoms treatment of the addiction disorder. Because the drug has been
classied as addiction therapy, as opposed to pain therapy,
Since many patients with drug abuse histories use multiple some patients express disbelief in the analgesic efcacy of
drugs, it is necessary to conduct a complete drug-use history to methadone. Others wish to continue the morning dose for
prepare for the possibility of withdrawal. Delayed abstinence addiction even if treatment throughout the remainder of the
syndromes, such as may occur after abuse of some benzodi- day uses the same drug at an equivalent or higher dose. Some
azepine drugs, may be particularly diagnostically challenging.11,25 clinicians who work at methadone clinics are willing to con-
tinue to be involved and prescribe opioids outside the pro-
Considering the Therapeutic Impact of Tolerance gram, and others wish to relinquish care.25
Patients who are active substance abusers may be tolerant to Selecting Appropriate Drugs and Route of
drugs administered for therapy, which will make pain man- Administration for the Symptom and Setting
agement more difcult. The magnitude of this tolerance is
never known. Therefore, it is best to begin with a conservative The use of long-acting analgesics in sufcient amounts may
dose of therapeutic drug and then rapidly titrate the dose, with help to minimize the number of rescue doses needed, lessen
frequent reassessments until the patient is comfortable.9,22 cravings, and decrease the risk of abuse of prescribed medica-
tions, given the possible difculty of using short-acting for-
Applying Pharmacological Principles to Treating Pain mulations in patients with substance abuse histories. Rather
than being overly concerned regarding the choice of drug or
Widely accepted guidelines for cancer pain management must route of administration, the prescription of opioids and other
be used to optimize long-term opioid therapy.26,27 These guide- potentially abusable drugs should be carried out with limits
lines stress the importance of patient self-report as the base for and guidelines.11,25
dosing, individualization of therapy to identify a favorable
equilibrium between efcacy and side effects, and the value of Recognizing Specic Drug Abuse Behaviors
monitoring over time.25 They also are strongly indicative of the
concurrent treatment of side effects as the basis for enhancing In an effort to monitor the development of aberrant drug-
the balance between both analgesia and adverse effects.28 taking behaviors, all patients who are prescribed potentially
Individualization of the dose without regard to the size, abusable drugs must be evaluated over time. This is particularly
which is the most important guideline for long-term opioid true for those patients with a remote or current history of drug
therapy, can be difcult in populations with substance abuse abuse, including alcohol abuse. Should a high level of concern
histories.25 Although it may be appropriate to use care in pre- exist regarding such behaviors, frequent visits and regular
scribing potentially abusable drugs to these populations, decid- assessments of signicant others who can contribute informa-
ing to forego the guideline of dose individualization without tion regarding the patients drug use may be required. To pro-
regard to absolute dose may increase the risk of undertreat- mote early recognition of aberrant drug-related behaviors, it
ment.29 Aberrant drug-related behaviors may develop in may also be necessary to have patients who have been actively
response to unrelieved pain. Although these behaviors might abusing drugs in the recent past submit urine specimens for
be best understood as pseudoaddiction, the incidence of such regular screening of illicit or licit but unprescribed drugs.
behaviors serves to verify clinicians fears and encourages When informing the patient of this approach, explain that it is
greater prudence in prescribing.25 a method of monitoring that can reassure the clinician and pro-
Another common misconception is the use of methadone. vide a foundation for aggressive symptom-oriented treatment,
Clinicians who manage patients with substance abuse histo- thus enhancing the therapeutic alliance with the patient.11,25
ries must comprehend the pharmacology of methadone due
to its dual role as a treatment for opioid addiction and as an Using Nondrug Approaches as Appropriate
analgesic.30,31 Methadone impedes withdrawal for signicantly
longer periods than it relieves pain. That is, abstinence can be Many nondrug approaches can be used to assist patients in
prevented and opioid cravings lessened with a single dose, coping with chronic pain in advanced illness. Such educa-
while most patients appear to require a minimum of three tional interventions may include relaxation techniques, ways
of thinking of and describing the experience of pain, and Using Written Agreements
methods of communicating physical and emotional distress to
staff members (see Table 382). While nondrug interventions Using written agreements that clearly state the roles of the
may be helpful adjuvants to management, they should not be team members and the rules and expectations for the patient
perceived as substitutes for drugs targeted at treating pain, or is helpful when structuring outpatient treatment. Basing the
other physical or psychological symptoms.11,25 level of restrictions on the patients behaviors, graded agree-
ments should be enforced that clearly state the consequences
Inpatient Management Plan of aberrant drug use.11,25 A sample contract for the initiation of
opioid therapy is provided in Figure 381. This template can be
In designing the inpatient management of an actively abusing modied and structured to t individual practices and clinics,
patient with advanced illness, it is helpful to use structured but it is a good general indication of the responsibilities of the
treatment guidelines. While the applicability of these guide- patient as well as the provider.
lines may vary from setting to setting, they provide a set of
strategies that can ensure the safety of the patient and staff,
control the patients manipulative behaviors, allow for super- Guidelines for Prescribing
vision of illicit drug use, enhance appropriate use of medica-
tions for pain and symptom control, and communicate an Patients who are actively abusing must be seen weekly to
understanding of pain and substance abuse management.11,25 build a good rapport with staff and afford evaluation of
Under certain circumstances, such as actively abusing symptom control and addiction-related concerns. Frequent
patients who are scheduled for surgery, patients should be visits allow the opportunity to prescribe small quantities of
admitted several days in advance when possible to allow for drugs, which may decrease the temptation to divert and
the stabilization of the drug regimen. This time can also be provide a motive for not missing appointments11,25 (see
used to avoid withdrawal and to provide an opportunity Table 382).
to assess whether modications to the established plan are Procedures for prescription loss or replacement should be
necessary.11,25 explicitly explained to the patient, with the stipulation that no
Once established, the structured treatment plan for the man- renewals will be given if appointments are missed. The patient
agement of active abuse must proceed conscientiously. In an should also be informed that any dose changes requires prior
effort to assess and manage symptoms, frequent visits are usu- communication with the clinician. Additionally, clinicians
ally necessary. It is also important to avoid drug withdrawal and, who are covering for the primary care provider must be
to the extent possible, prescribed drugs for symptom control advised of the guidelines that have been established for each
should be administered on a regular scheduled basis (see Table patient with a substance abuse history to avoid conict and
382). This helps to eliminate repetitive encounters with staff disruption of the treatment plan.11,25
that center on the desire to obtain drugs.11,25
Treatment management plans must be designed to repre-
Using 12-Step Programs
sent the clinicians assessment of the severity of drug abuse.
Open and honest communication between clinician and The clinician should consider referring the patient to a 12-step
patient to stress that the guidelines were established in program with the stipulation that attendance be documented
the best interest of the patient is often helpful. However, in for ongoing prescription purposes. The clinician may wish to
cases where patients are unable to follow these guidelines, contact the patients sponsor in an effort to disclose the patients
despite repeated interventions from the staff, discharge illness and that medication is required in the treatment of the
should be considered. Clinicians should discuss this deci- illness. This contact will also help to decrease the risk of stig-
sion for patient discharge with the staff and administration, matizing the patient as being noncompliant with the ideals of
while considering the ethical and legal ramications of this the 12-step program.11,25
action.11,25
Outpatient Management Plan Urine Toxicology Screens
Alternative guidelines may be used in the management of Periodic urine toxicology screens should be performed for
the actively abusing patient with advanced illness who is most patients to encourage compliance and detect the
being treated on an outpatient basis. In some instances, the concurrent use of illicit substances. This practice, as well as
treatment plan can be coordinated with referral to a drug how positive screens will be managed, should be clearly
rehabilitation program. However, patients who are facing explained to the patient at the beginning of outpatient ther-
end-of-life issues may have difficulty participating in such apy. A response to a positive screen generally involves
programs. Using the following approaches may be helpful increasing the guidelines for continued treatment, such as
for managing the complex and more difficult-to-control more frequent visits and smaller quantities of prescribed
aspects of care. drugs.11,25
Figure 381. Pain management guidelines: opioid

medication consent form.
Family Sessions and Meetings 9=

case study
The clinician, in an effort to increase support and function,
A 39-Year-Old Man with Pancreatic Cancer
should involve family members and friends in the treatment
plan. These meetings will allow the clinician and other team The patient, a 39-year-old man with pancreatic cancer, was
members to become familiar with the family and additionally referred to the palliative care program shortly after he had
assist the team to identify family members who are using illicit opted to forego chemotherapy and radiation therapy, and it
drugs. Offering referral of these identied family members to was decided he was not a candidate for surgical resection.
drug treatment can be portrayed as a method of gathering The patient had presented with advanced disease and a
support for the patient. The patient should also be prepared to 40-pound weight loss. He had been suffering with abdomi-
cope with family members or friends who may attempt to buy nal pain for months but was self-treating with sustained-
or sell the patients medications. These meetings will also assist release oxycodone, which he had been abusing and dealing
the team in identifying dependable individuals who can serve for the last several years. The patient had a very limited life
as a source of strength and support for the patient during expectancy when rst evaluated, and he was not open to
treatment.11,25 A nal case study illustrates how a highly com- considering other opioids or celiac plexus nerve blocks. He
plicated patient case, with advanced cancer requiring an stated that he just wanted to be comfortable enough to play
unorthodox amount of medication, was managed in coopera- with his 3-year-old daughter until he died. The patient
tion with hospice nurses to treat his pain and control aberrant always required high doses of medication for comfort
behavior. (800-mg sustained-release oxycodone b.i.d.) and did
Figure 381. (continued)
eventually agree to also take adjuvant analgesics and corti- more perplexing due to cultural differences that may exist.
costeroids. He had remarkably good pain and symptom Using a treatment plan that involves a team approach that rec-
management until his death, and even went deer hunting ognizes and responds to these complex needs is the optimum
2 weeks before he died. The provision of supportive care strategy to facilitate treatment. While pain management may
would have been impossible without the structure provided continue to be challenging even when all treatment plan proce-
by hospice nurses, who delivered 1 days worth of medicine dures are implemented, the health care teams goal should be
at a time, turned up randomly for pill counts at the patients providing the highest level of pain management for all patients
home, collected urine for toxicology screens, and otherwise with substance use disorders.
coordinated tremendous levels of family support from those
family members who had been assessed and deemed not
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gesic practice. Ann Emerg Med 2000;35:1116. 31. Lowinson JH, Marion IJ, Joseph H. Methadone maintenance. In:
17. Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for Lowinson JH, Ruiz P, Millman RB, eds. Substance Abuse: A
inadequate emergency department analgesia. JAMA 1993;269: Comprehensive Textbook. Baltimore: Williams & Wilkins, 1992:
15371539. 550571.
VI
End-of-Life Care
Across Settings
o]
39o] Marilyn Bookbinder
Improving the Quality of Care

Across All Settings
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed,
thats the only thing that ever has.Margaret Mead
Key Points One system for addressing health and end-of-life care is the
Quality palliative care is a result of intelligent systematic efforts to inclusion of quality methodologies designed to improve edu-
raise standards of care. cation, streamline health care bureaucracies, help measure costs,
Tools are available to assist in the monitoring and measurement of and even address how people feel about their jobs. Whether or
structure, process, and competency in the delivery of palliative care. not your organization is accredited by the Joint Commission
Outcome measures are needed to evaluate the impact of innovative on Accreditation of Health Care Organizations (JCAHO), man-
change on patient and family quality of life, health care systems, dated to use a quality improvement (QI) methodology, a
and professional practice. planned-change approach is needed to achieve positive out-
comes and to cultivate an infrastructure that maintains opti-
mal standards of care for those at the end of life.
This chapter provides perspectives on QI-based initiatives
in U.S. health care organizations across settings and popula-
tions, and discusses their impact on patient, professional, and
system outcomes in palliative care. Principles of QI and struc-
tural, process, and outcome approaches to conducting QI stud-
ies are introduced. A case study is presented of a pathway for
the end of life that is now being tested and used to establish the
linkages between QI principles and practice to improve end-
of-life care. The chapter closes by showcasing nurses within
interdisciplinary teams who are providing leadership in the
eld of palliative care.
o]
The Terminology Turmoil
Quality improvement is increasingly commonplace in the lex-

icon of industry and government health care systems in the
United States. Typically, QI is used to describe a process for
improving things. Although the terms vary, distinct vocabu-
lary, tools, and techniques used to conduct QI studies are the
same. Other labels include continuous quality improvement
(CQI), total quality management (TQM), total quality systems
(TQS), quality systems improvement (QSI), total quality (TQ),
and performance improvement (PI).1
Because consensus regarding these terms is unlikely, it is
recommended that each organization dene a methodology
725
726 End-of-Life Care Across Settings
and terms that apply across the board and be consistent in data provided evidence that end-of-life care could be improved.
their use. This will encourage users of QI to read beyond labels The purpose of the 1-year pilot study, funded by a New York
and to examine the meaning behind concepts and the value of State Quality Measurement grant, is to create a benchmark for
teamwork in achieving goals. For the purposes of this chapter, the care of the imminently dying inpatient.
QI is dened generically as the label for the philosophy driving The QI process begins and ends with customers, determin-
a systematic approach to improving clinical practice, systems, ing their needs, and creating products that meet or exceed
issues, education, and research. their expectations. To achieve the necessary improvement,
multidisciplinary teams are needed to break down barriers
between disciplines and departments, promote collaboration
o] and mutual respect among health care workers, and encourage
Quality Improvement in Health Care participation from front-line staff. In the BIMC pilot study, to
determine the causes of variation in end-of-life (EOL) care, a
What Is Quality Improvement? 28-member team was formed to involve staff integral to the
EOL process on ve pilot units: oncology, geriatrics, hospice,
As a philosophy, QI is broadly dened as a commitment and medical intensive care, and step-down unit. Early in the study,
approach used to continuously improve every process in every QI techniques of brainstorming and owcharting were used to
part of an organization, with the intent to exceed customer identify health system barriers and to identify possible strate-
expectations and outcomes. As a management approach, QI gies for dealing with them.
is a way of doing business: a way to stimulate employees to QI teams use a systematic, scientic approach and statistical
become part of the solution by improving the ways care is methods to study problems and make decisions. This paradigm
delivered, identifying the root causes of problems in systems, encourages an environment of life-long learning and promotes
designing innovative products and services, and evaluating a team approach to identifying and developing the best prac-
and continuously improving.2 tices. The BIMC project identied a critical need for multidis-
The concepts of QI go back to the 1920s, with pioneers in ciplinary education and teambuilding. For example, monthly
the eld such as Deming, Shewhart, Juran, and Ishikawa. QI meetings included a segment of the American Medical
W. Edwards Deming, an American engineer and statistician Associations (AMAs) Education for Physicians on End-of-Life
most widely known for his efforts to assist Japan in its quest Care (EPEC)7 training program. Discussions, led by Russell K.
for quality after World War II, was all but unknown in his own Portenoy, M.D., a co-investigator for the AMA project and
country until the 1980s. In fact, the Deming prize, Japans chairperson of the QI team, provided team members funda-
highest award for industrial productivity and quality, was rst mental information about the components of good EOL care,
awarded to an American company, Florida Electric and Light as well as opportunities to voice their own ideas and concerns.
Company, in 1989. To date, no health care organizations have The QI team worked in four subcommittees over a 5-month
received the Deming prize. Joseph Juran, also involved in the period to reach the implementation schedule of the project.
Japanese quality transition in the 1940s and 1950s, added the One subcommittee developed the Palliative Care for Advanced
concepts of planning and control to the quality process and Disease pathway (PCAD), which has three parts: a multidisci-
addressed the costs of poor quality, which includes wasted plinary care path, a ow sheet for daily documentation of care,
effort, extra expense, and defects. Readers wanting more detail and a physicians order sheet, that includes suggested medica-
about the rationale and statistical methods behind QI philos- tions for treating 15 of the most prevalent symptoms at EOL.
ophy and methods are referred to the writings of Deming and The other three subcommittees addressed (1) education of
others.3,4 nurses, physicians, other staff, patients, and families; (2) a time-
Although Demings quality method has been used exten- line and detailed plan for implementation, education, and eval-
sively in industry with much success, it has only been adapted uation of PCAD; and (3) tools and methods for evaluating
to education and health care since the early 1990s. The U.S. patient, family, staff, and system outcomes of the project.
Health Care Reform Act of 19925 fueled the need for QI meth-
ods and better control over inconsistencies in services. Effects Effectiveness of Quality Improvement
of the reform include: (1) increased managed-care contracts in
health systems and reductions in reimbursement; (2) reorgan- While many organizations have embraced the notion of using
ization and downsizing of hospitals and staff; (3) cross-training QI to improve cost and quality outcomes, the experience in the
and the development of multipurpose personnel; (4) shorter United States is relatively new. In fact, a national survey of U.S.
hospital stays for patients; and (5) a shift in the provision of ser- hospitals in 1993 found that 69% had adopted or were beginning
vices from hospital care to ambulatory and home care. to implement some form of QI program. Seventy-ve percent
Table 391 describes six key principles of QI, based on the of hospitals adopting QI had done so within the previous 2
doctrines of W. Edwards Deming. These principles are being years,8 studying administrative issues, such as patient schedul-
applied to a QI project to improve end-of-life care at Contin- ing, record-keeping, and billing, rather than clinical practice.
uums Beth Israel Medical Center (BIMC) in New York City.6 At One study provides evidence that quality and outcomes of
BIMC, chart reviews of inpatient deaths and other sources of care can be improved and certain efciencies achieved through
Improving the Quality of Care Across All Settings 727
Table 391
Principles of Quality and Application for Improving End-of-Life Care
Principle Discussion Application
1. Customer-driven The focus is on customers, both internal and Chart reviews of patient deaths reveal areas
external, and understanding them. Teams to improve: Documentation regarding advance
strive to achieve products/services to better directive discussions, symptom management
meet needs and exceed expectations effectiveness, spiritual and psychosocial
of customers. care, treatment decisions in last 48 h of life.
Focus groups with caregivers reveal need for
better communication with health professionals
about patients progress.
2. System optimization Organizations/teams are systems of Hospital-wide multidisciplinary CQI team is
and alignment interdependent parts, with the same mission formed to reduce variation in EOL care with
and goals for customers. Optimizing three standardized tools that provide guidelines
performance of the entire system means for care (carepath), documentation, and
aligning the processes, technology, people, physician orders.
values, and policies to support team efforts Ongoing resources from Pain and Palliative Care
to continually improve. available to pilot unit staff (one advanced
practice nurse)
3. Continual improvement Focus shifts to processes of care and using Flowcharting and brainstorming techniques
and innovation a systematic and scientic approach. Methods help identify current activities and unit norms
seek to reduce and control unnecessary for EOL care regarding establishing goals of
process variation and improve outcomes. care, advance directives, respecting patient and
family preferences, and barriers to implementing
goals of project.
4. Continual learning Resources are available to develop a culture Extensive literature searches and team expertise
in which people seek to learn from each other guide development of clinical tools and
and access new sources of evidence. Feedback educational materials.
mechanisms support the use of evidence to Team members receive education regarding
drive improvements. issues in EOL care, viewing of Education in
Palliative and End-of-Life Care (EPEC).
Adult learning principles guide sequencing and
content of educational sessions for unit staff
(e.g., physiology of dying).
5. Management through Decision-making is based on knowledge, Team uses FOCUS-PDSA methodology to
knowledge conrmed with facts about what is best structure study processes. Content experts in
practice, and guided by statistical thinking. EOL, measurement, outcomes, and QI guide
sampling, selected outcome measures, and
graphic display of data.
6. Collaboration and Organizations/teams engage everyone in the Team forms subcommittees to develop materials
mutual respect process of improvement and in the discovery in four areas based on expertise and interest:
of new knowledge and innovations. Mutual Carepath development, ow sheet,
respect for the dignity, knowledge, and physicians orders
potential, contributions of others is valued Implementation (timeline for phases of
by members. planning, launching, rollout, evaluation,
dissemination, and decisions to adopt practice
changes)
Education (staff, patient, and family)
Outcomes (patient, family, staff knowledge,
process audit of new tools)
the application of QI. A review of the literature from 1991 addressed overuse of services (i.e., provision of health services
through 1997 revealed 42 single-site and 13 multisite QI studies when the risks outweigh the benets); three looked at under-
for examination.8 Of the 42 single-site studies, nearly 60% use (i.e., failure to provide health services when benets exceed
focused on two major areas: streamlining surgical or medical risks); and 23 evaluated misuse (i.e., appropriate health ser-
procedures and reducing length of stay. Thirteen studies vices selected but poorly provided). Only two studies used
randomized design, while most used weaker designs, such as Research: Current knowledge and understanding
prepost observation. are inadequate to guide and support consistent
Of the 13 multisite studies, seven addressed misuse of ser- practice of evidence-based medicine at the end
vices (i.e., focusing on improving care without questioning the of life.
amount of care provided); four focused on appropriateness of
care in terms of underuse (e.g., pediatric immunizations rates,
use of guidelines); and two examined overuse of services (e.g., o]
length of stay). Only one multisite study used a randomized Structures for QI and End-of-Life Care
design. Although some study outcomes included standards for
better pain management, none addressed the application of
QI Methodologies Provide Structures
QI in palliative care or, specically, end-of-life care.
Given the emphasis in health care on using QI to improve Various methodologies can be used as structural elements in a
quality and cost in health care, nurses can expect to see increases framework designed to support an EOL care program. Such
in accountability in the following areas: performance moni- structures also help to explain the interrelationship of parts.
toring, participation in multidisciplinary team meetings, edu- One type of structure, a systematic methodology, organizes
cation in quality improvement, implementation of process and guides the activities of people performing QI; a second
improvement approaches, use of owcharts and other tools type assures the validity and appropriateness of a study to
and techniques for data gathering, restructuring of work ow improve end-of-life care.
patterns and removal of barriers to patient care, development A systematic methodology is needed to conduct a QI study
and use of quality indicators, and focus on patient and care- and various models exist, some of them widely recognized in
giver outcomes. health care. Others have been designed specically for partic-
ular institutions QI departments. Although QI models may
Quality Improvement in Palliative Care vary, all of them support QI as an unceasing, organization-
wide effort that focuses on improving processes of work. They
The World Health Organization denes palliative care as the are not intended for policing or blaming people for errors after
the active total care of patients whose disease is not respon- the fact. Systematic methodologies provide the infrastructure
sive to curative treatment . . . when control of pain, of other needed to carry out a study that may span a period of years to
symptoms and of psychological, social and spiritual problems reach targeted goals.
is paramount.9 Palliative care is often referred to as support- Ruskin writes, Quality is never an accident. Quality is
ive care or comfort care that seeks to prevent, relieve, alleviate, always the result of intelligent effort, intent, and vigilance to
lessen, or soothe the symptoms of disease without effecting make a superior thing.11 One frequently used methodology
a cure. designed to support intelligent effort is the FOCUS-PDSA
A valuable resource for those working in end-of-life care is cycle, which illustrates the BIMC teams application of each
the landmark report published by a committee of the Institute step in the cycle (see Appendix 391). The details and applica-
of Medicine (IOM), Approaching Death: Improving Care at tion of the FOCUS-PDSA cycle and tools and techniques for
End of Life.10 The committee of 12 experts in medical and nurs- conducting QI studies have been described elsewhere.12,13 This
ing care for chronically ill and severely ill patients summarized is also sometimes referred to as the FOCUS-PDCA cycle, but
four areas of improvement: the state-of-the-knowledge in will be called by its more commonly used name, the FOCUS-
end-of-life care, evaluation methods for measuring outcomes, PDSA cycle in this chapter.
factors impeding high-quality care, and steps toward agree- The FOCUS-PDSA methodology is briey described below
ment on what constitutes appropriate care at end of life. The using the BIMC example. Its rst ve steps are aimed at team
four major ndings suggest starting points for QI work: building, clarifying the nature and scope of the improvement
needed, and gathering information about the culture and set-
Patient care: Too many people suffer endlessly at the ting in which the study will be done.
end of life, both from errors of omissionwhen
caregivers fail to provide palliative and supportive
FOCUS
care known to be effectiveand from errors of
commissionwhen caregivers do what is known to Find a process to improve. The focus for the BIMC
be ineffective and even harmful. study was care of imminently dying inpatients on
Organizations: Legal, organizational, and econom- the ve hospital units known to have the highest
ical obstacles conspire to obstruct reliably excellent volume of patient deaths. Chart reviews of patient
care at the end of life. deaths identied the need for the study.
Education: The education and training of physi- Organize to improve a process. A 28-member QI
cians and other health care professionals fail to pro- team spanned departments and disciplines to
vide them with knowledge, skills, and attitudes address end-of-life issues, such as ethics, social work,
required to care well for the dying patient. chaplains, pharmacists, nurses, and physicians.
Clarify what is known. Flowcharts were used to map The PDCA Cycle: Plan/Do/Check/Act (also referred to as the
the ideal process of care and increase dialogue Plan-Do-Study-Act [PDSA]). The Shewhart Cycle3 constitutes
among the team about why the care varies. The the evaluation aspect of the study, and it is repeated until the
teams four subcommittees on care path develop- team reaches its goals. The implementation of these steps dur-
ment; implementation, education, and evaluation ing the BIMC pilot follows:
searched internal and external sources for evidence
and rationale in end-of-life care. Plan. In this step, a timeline of activities for the
Understand variation. Brainstorming techniques 1-year pilot prepared administration, team mem-
helped the team elicit reasons for variations in the bers, and others with direction, goals, and
care process and identify potential barriers. An resources. The sample timeline in Appendix 391
Ishikawa diagram (to display cause and effect) was illustrates the various phases involved in launching
used to show the barriers: materials, methods, peo- a project: the planning phase, roll-out or introduc-
ple, and equipment categories were used. Subcom- tion phase, implementation, evaluation, and dis-
mittees considered the barriers when planning and semination and reporting. The study design is
developing elements of the program. created. This includes determination of sample size
Select a process improvement. Four subcommittees and selection, what data will be collected and by
of the QI team developed evidence-based interven- whom, what tools will be used and when they will
tions, including the three-part PCAD care path, be applied, what training will be conducted and
educational materials, and appropriate tools to mea- by whom, and who will perform data analysis.
sure professional, patient and family, and system Table 392 outlines principles for assuring the qual-
outcomes. This step starts the PDSA cycle. ity of data.
Table 392
Principles for Assuring the Quality of Data
Principle Key Point
Validity/reliability There is accuracy and consistency in data collection.

Completeness Measurement system includes a policy for missing data and
timeliness of collection.
Sampling method Sample size is determined by power analysis to ensure
representativeness of population.
Outlier cases Measurement systems make efforts to validate or
correct outliers.
Data specication There are standardized denitions and terminology for
transmission/use of data across departments.
Internal standards Prespecied data-quality standards are tailored for individual
performance measures.
External standards There is a commitment to implementing data sets, codes,
methodologies developed by accrediting bodies
(e.g., government, professional organizations) for data use
across health care systems.
Auditability Data are traceable to the individual case level.
Monitoring process Ongoing data-measurement process in place is based on
prespecied standards.
Documentation Data standards and ndings are recorded and available
for review.
Feedback Performance systems regularly provide summary reports on
data quality to organization leadership.
Education Performance systems provide support through education,
on-site visits, and guidelines to ensure quality data.
Accountability Measurement systems are responsible for data quality and
dissemination to participating members.
Do. The interventions are implemented and data nursing interventions that can reduce the suffering of dying
collection begins. In the BIMC study, several pre- patients.
measures were obtained, including baseline knowl- To meet the health care reform challenges of high quality at
edge, using the Palliative Care Quiz for Nurses,14 lower cost, there has been an explosion of tools designed to
chart reviews, and focus groups with staff to obtain reduce variability in the processes of care. Critical pathways
baseline data. and algorithms are two types of tools that provide useful
Check. The results of data collection are analyzed by strategies for nurses to monitor and manage the processes of
the team and the next steps formulated. The BIMC patient care. These tools dene desired patient outcomes for
group used the ndings from the knowledge specic medical conditions and delineate the optimal sequence
pretest to identify areas for continuing education. and timing of interventions to be performed by health care
Through consensus, members agreed that knowl- professionals.
edge items answered incorrectly by 15% of staff
would be targeted for continued education. Clinical Pathways
Act. Action plans are developed. The BIMC team
gave feedback to the QI team, pilot units, and the In the QI context, the term pathways refers to clinical approaches
hospital QI department in a quarterly report. Staff or critical paths that form a structured, multidisciplinary
requested education in the physiology of dying. action plan that denes the key events, activities, and expected
outcomes of care for each discipline during each day of care.
Standards of Care Provide Structure Pathways delineate the optimal sequence and timing of inter-
ventions.29 The goal of using a pathway is to reduce variation
Quality care begins in clinical settings with well-dened stan- in services and practices, thus reducing costs.3033 Table 393
dards of care that are accepted as authoritative by profession- shows a six-step process for developing pathways. Table 394
als. Such standards represent acknowledged conditions against lists commonly used elements of care and interventions.29 By
which comparisons are made and levels of excellence are acting on these aspects of QI to improve EOL care, the BIMC
judged. They serve to establish consistency, expectations, and QI team pilot-tested the pathway in oncology, geriatrics, and
patterns for practice. They articulate what health care profes- the hospice setting.
sionals do and whom they serve, and they dene what clinical
services and resources are needed. Standards also provide a Pilot-Test of a Pathway to Improve End-of-Life Care. The
framework against which quality of care can be measured and entire QI team at BIMC designed an evidenced-based PCAD
constantly improved. pathway consisting of three parts: (1) a Care Paththe inter-
In QI, the term benchmark is used to refer to the search disciplinary plan of care; (2) a Daily Patient Care Flow Sheet
for the best practices that consistently produce best-in-the- for documentation of assessments and interventions (includ-
world results4the gold standard. Standards of care,15,16
guidelines,17,18 position papers,1922 principles of professional
practice,2326 and research models for end-of-life care27,28 are
increasingly becoming available to improve appropriateness, Table 393
effectiveness, and cost-effectiveness of care. The Six-Step Process for Developing a Care Path
If explicit, guidelines can describe appropriate manage-
1. Identify high-volume, high-priority case types, review
ment of specic symptoms and at the same time provide a medical records, review and evaluate current literature to
basis for assessment, treatment, and possible outcomes. How- characterize the specic problems, average length of stay,
ever, if the evidence is weak, as is the case for much of end-of- critical events, and practical outcomes.
life care, guidelines or standards need to be supported with 2. Write the critical path, dening the sequence and timing of
recommendations made through consensus.10 functions to be performed by physicians, nurses, and
other staff.
3. Have nurses, physicians, and other disciplines involved in
o] the process review the plan of care.
Processes for QI and End-of-Life Care 4. Revise the pathway until consensus on care components
is reached.
Answering the question What are the processes for giving
5. Pilot-test the pathway and revise as needed.
care to a dying patient? can generate many ideas for a QI
study. Process refers to the series of activities or functions 6. Incorporate pathway patient management into quality-
improvement programs, which include monitoring and
that bring about a result. Nurses contributions are critical in
evaluating patient care outcomes.
the processes of assessment, diagnosis, treatment, and evalua-
tion of patients. Pain, dyspnea, agitation, nausea, diarrhea, Source: Janken et al. (1999) reference 29.
and constipation are some important symptoms leading to
imminently dying. As patients were identied by nurses as

Table 394 candidates, barriers to implementing PCAD began to surface:
Routine Elements of Care Paths
patients and families wanted everything done to continue
Physical elements curative treatment; a physician evaluated a patient as fragile
Medications and unable to hear bad news; a patients physical status
Nutrition and dietary changed dramatically in 24 hours, from dying to rallying
Vital signs, intake and output, weight and preparing for discharge; and a house staff physician felt
Comfort assessment that he was already prescribing PCAD and could not see the
Safety and activity benet of enrollment.
Diagnostic lab work
There were several positive outcomes of the PCAD pilot.
Intravenous use
Results included: (1) a heightened awareness by staff of the dis-
Transfusions
Diagnostic tests ease trajectory (such as initial diagnosis, curative treatment, life-
Psychosocial and spiritual needs prolonging treatment, palliative care, symptomatic palliative
Referrals and consultations care, and care of the imminently dying) and patient wishes for
Patient and family counseling and education this admission; (2) increased discussions about the goals of care
and the rationale for treatment orders; and (3) development of
a systematic process for recognizing patients needing referral to
hospice and to pain medicine and palliative care for symptom
management and family support following discharge.
Table 395
Debrieng sessions held with staff after a patient died
Goals of the Palliative Care for Advanced Disease (PCAD)
became an important aspect of the PCAD process. Staff were
Pathway
encouraged to discuss their satisfaction or dissatisfaction with
Respect patient autonomy, values, and decisions. the experience of the PCAD pathway. Such questions as Were
Continually clarify goals of care. the patients wishes honored? Were unnecessary tests/proce-
Minimize symptom distress at end of life. dures performed? Did the patient have a peaceful death?
Optimize appropriate supportive interventions Were symptoms controlled? What is the familys likelihood
and consultations.
for complicated grieving and the need for follow-up? gener-
Reduce unnecessary interventions.
ated much dialogue and opportunities for teaching and grief
Support families by coordinating services.
Eliminate unnecessary regulations. resolution. Overall, staff expressed appreciation for the oppor-
Provide bereavement services for families and staff. or tunity to talk about experiences of patient care and the personal
Facilitate the transition to alternate care settings, such as involvement in caring for a patient and family whom they may
hospice, when appropriate. have known over several admissions. Another positive outcome
for unit nurses was using the PCAD Daily Flow Sheet. Staffs
report that it provides them with an easy and comprehensive
system for documenting the assessment and intervention of
ing automatic referrals to social work and chaplaincy); and key elements in EOL care: comfort; physical, psychosocial, and
(3) a standardized Physician Order Sheet, with suggestions for spiritual care; and patient and family support.
medical management of 15 symptoms prevalent at the end of QI team members identied several areas needing improve-
life (see Appendix 391 and http://www.stoppain.org). This ment during the pilot period: (1) clearer denition and mea-
three-part pathway was designed to guide interdisciplinary sure of the concept of comfort; (2) identifying the best forum
management of the imminently dying inpatient once the for educating voluntary physician staff, who have less unit/
patients primary physician has ordered PCAD (Table 395). hospital involvement than staff physicians; (3) documentation
Implementation of PCAD in daily care on three units has of spiritual care and issues; (4) systematic identication of fam-
conrmed the enormous complexity of predicting the timing ilies at risk for complicated grieving; and (5) resources about
of a patients death.34 Although imminently dying was local bereavement services and education for families.
dened for the study as hours to 2 weeks until death, nurses Results of the pilot study suggest that PCAD is a means for:
and physicians reported discomfort about making this deci- (1) increasing multidisciplinary team discussions of patients
sion. Each patient was assessed for eligibility during daily goals of care during hospitalization; (2) reducing the variation
morning report or at weekly discharge planning rounds by in the documentation of care of imminently dying patients,
answering the question, Whose death would not surprise placing emphasis on comfort, patient and family wishes, and
you this admission? Designated nurse leaders on each unit closure for caregivers; (3) increasing staff awareness of patients
served as the liaison between staff and primary physicians to who are imminently dying or in need of palliative care services,
request a patients enrollment into PCAD. During the 3- long-term care, and hospice; and (4) identifying areas in EOL
month start-up period, multidisciplinary teams reported that care for continual improvement in organizational systems,
their greatest challenge was identifying patients who were education, practice, and evaluation.35
Figure 391. Algorithm designed to improve the management of dyspnea. (Developed at

Dartmouth-Hitchcock Medical Center, Lebanon, NH, 1998, used with permission.)
Figure 391. (continued)
Algorithms and Standardized Orders For institutions that have had a JCAHO survey within the
last decade, it is clear that there has been a shift in focus of per-
Algorithms have also become popular tools designed to deliver formance from competence and skills (Is the organization
consistent, timely care, especially symptom management at able to provide quality services?) to productivity and out-
end of life. Figure 391 shows one example of an algorithm comes (To what extent does the organization provide quality
developed at Dartmouth-Hitchcock Medical Center, Lebanon, services?). For example, rather than focusing on whether the
New Hampshire,36 to improve the management of dyspnea. institution has a pain management program, surveyors might
The tool offers clinicians a methodology for assessing the evaluate whether pain standards have been implemented and
symptom and its etiology, directing treatment options, and if they have had an effect on patients satisfaction with pain
establishing guidelines for pharmacological and nonpharma- management or patient understanding of side effects associ-
cological interventions. ated with specic analgesics.
The Providence Hospice in Yakima, Washington, is a model Indicators reect a performance measure composed of
program of QI thinking applied in daily practice and service. competence and productivity. Competence means that indi-
A pocket-size handbook of standing orders and algorithms, viduals or the organization have the ability (e.g., education,
Symptom Management Algorithms for Palliative Care,37 is avail- behavioral skills) to provide quality services; productivity means
able for clinicians. The symptom-management algorithms those abilities are translated into actions that achieve quality
allow for a team approach involving the referring physician, outcomes. Indicators also reveal deviations from the norm
medical director, nurse, pharmacist, patient, and family care- and may warn of impending problems. The amount and types
givers. QI results have been positive thus far. In one study, use of resources and expertise available on QI teams will inuence
of an algorithm reduced the turnaround time of medication the indicators selected to assess quality care. Indicators of care
delivery to home hospice patients from 2448 hours to less at the end of life, for example, may require a single-item mea-
than 2 hours. Other topics in the handbook include algo- sure, multiple items with a summary score, or multiple tools.
rithms for pain, and other distressing symptoms, such as Indicators are expressed as an event or ratio (percentage) and
mucositis, anxiety, and terminal agitation. can be categorized into structure, process, or outcome indica-
tors that are clinical, professional, or administrative in scope.
Three examples are provided below.
o]
1. Structural indicators are derived from written stan-
Outcomes for QI and End-of-Life Care
dards of care and need to be in concert with the
mission, philosophy, goals, and policies of a depart-
Federal and state governments, private purchasers, physicians,
ment or unit. Structure standards measure whether
nurses, insurers, labor unions, health plans, hospitals, and accre-
the rules are being followed. For example, a policy
ditation organizations, among others, have begun to address
may read that all patients admitted to the hospital
some of the signicant quality problems in the U.S. health care
require discussion and documentation about
systems (http://www.ahcpr.gov/qual)38 by improving the abil-
advanced directives within 48 hours of admission.
ity to measure and report the quality of care being delivered.
A structural indicator might read:
Such reporting prompts a closer look at provider and health
care practices, both as feedback for clinicians, and as publicly
Number of records with discussion/
available scorecards for consumer evaluation. Two approaches
Documentation of advanced directives
are described for measuring outcomes in palliative care improve-
ment efforts: using a single indicator of a quality of service or Number of patients who were
using multiple measures. admitted to the oncology unit
QI Indicators: Measures of Organizational A structural indicator used frequently in a rapidly

Performance changing health care job market relates to competence.
This indicator might require that all staff working on a
A clinical indicator is dened as a quantitative measure that geriatrics unit pass a written exam and demonstrate
can be used as a guide to monitor and evaluate the quality of behavioral competencies related to end-of life care,
important patient care and support-service activities.39 Indi- including pain management (see Appendix 391 for
cators that directly affect quality services include such factors sample knowledge quiz in palliative care). For this indi-
as timeliness, efciency, appropriateness, accessibility, conti- cator, a threshold is determined, such as 90% on the
nuity, privacy and condentiality, participation of patients written exam and three return demonstrations in the
and families, and safety and supportiveness of the care envi- use of the pathway, for what constitutes successful
ronment. Although they are not direct measures of quality, completion in education in EOL care.
indicators serve as screens or ags that direct attention to 2. Process indicators measure a specic aspect of nurs-
specic performance issues that should be targets for ongoing ing practice that is critical to patient outcomes.
investigation within an organization. Examples of process indicators might include
screening, assessments, and management of compli- Rapid Cycle Testing

cations. These indicators describe How care is to be
delivered and recorded. Sometimes it may be dif- The PDSA process is used in several national Improvement for
cult to separate process indicators from outcome Healthcare Initiative (IHI) collaboratives to improve EOL care.
indicators. For example, if an improvement study is In this model, teams are formed including senior leadership,
directed toward reducing discomfort related to acknowledging buy-in and support for the effort from the start.
noisy respirations (death rattle) in dying patients, Members are coached by IHI faculty. During a years time, with
the indicator might involve the process of assess- three 1-day educational sessions, online discussions groups, on-
ment of respirations, obtaining an order, and giving site visits by faculty, and telephone conference calls of frequently
appropriate medication. The indicator might read discussed topics, such as advance directives, pain and symptom
that within 2 months time: management, and bereavement care. Figure 392 shows the gen-
eral approach to sequential PDSA cycles. Teams are encouraged
Time medications given to time of relief to take make small changes rapidly, and once met, repeat the
from noisy respirations (in min) PDSA cycle with the next phase of the process or move to
The total time patient experienced noisy another process. This method has helped many achieve positive
respirations (in min) results within weeks to months. Examples of studies can be
found in Improving Care for the End-of-Life: A Sourcebook for
3. Outcome indicators39 measure what does or does Healthcare Managers and Clinicians.13 Encouraging teams to
not happen to the patient after something is or is reach their targeted goals quickly reinforces team building and
not done. More recently, QI teams have strength- motivates the teams to examine other processes.
ened outcome indicators by using research instru-
ments when available. Tools with validity and
Models and Domains to Assess End-of-Life Care
reliability, for which benchmarking data exist, have
a greater potential to predict outcomes and Organizations have shifted their focus from examining the
improve practices. For example, an outcome of documentation of processes of care to measuring outcomes of
implementing a multidisciplinary pathway to care and learning which treatment works best, under what
improve care of dying patients might be to achieve conditions, by which individuals, and at what cost. Although
family satisfaction with care at 90% very satised, no tested methods currently exist to adequately measure the
using a 0-to-5 scale (0 = very dissatisfied to quality of care at the end of life,34 efforts are underway to
5 = very satisfied). Using one of the items related to address this need. Results of a controlled trial, the SUPPORT
satisfaction with care in a standardized tool, an study, support the deciencies in care, citing the frequency of
outcome indicator might read that within aggressive medical treatment at end of life (deaths occurring
6 months time: in the ICU) and the lack of adequate symptom management
(conscious patients with moderate to severe pain).40
Number of families scoring very satised with care
Figure 393 presents a model used by the BIMC Depart-
Number of families completing satisfaction survey ment of Pain Medicine and Palliative Care for outcomes
Figure 392. General approach to sequential PDSA

cycles.
Figure 393. Model of outcomes research in the medically ill. (From Kornblith [1999],
reference 28, with permission.)
research in the medically ill. The model illustrates the feedback outcomes, such as pain, dyspnea; (2) functional health status,
loop between outcomes and health care. Outcomes research such as communication with family; (3) satisfaction, such as
requires ongoing data collection and analysis that feeds into perceived symptom relief; and (4) costs, such as caregiver out-
the modication of guidelines for clinical practice, resulting of-pocket expenses, inpatient charges.
in improved patient, caregiver, professional, and systems
outcomes, including costs.27 Appendix 391 presents BIMCs Outcome Measures to Assess the End of Life
Palliative Care Initial Consultation Tool located at http://
www.stoppain.org. The tool is used to screen patients for key Joan Teno, M.D., of the Center for Gerontology and Health
components of palliative care and resources needed from an Care Research at Brown University, together with faculty and
interdisciplinary team. The symptom assessment portion of staff at the Center to Improve Care of the Dying, has assem-
the form is a validated instrument, the Memorial Symptom bled a comprehensive annotated bibliography of instruments
Assessment Scale-Condensed. This data can be used to evalu- to measure the quality of care at the end of life. The Toolkit of
ate changes in symptoms within individuals and among groups Instruments to Measure End-of-Life Care (TIME) includes a
of patients. Patient Evaluation, After-Death Chart Review, and After-
The American Geriatrics Society proposes 10 domains to Death Caregiver Interview.41 A recent addition to the toolkit is
measure performance and assess quality at end of life (Table the mortality follow-back survey of family members or other
396).26 Organizations using the Clinical Value Compass4 knowledgeable informants representing 1578 decedents per-
approach to achieve quality and evaluate outcomes use four ceptions of the last place of care.42 Tenos current research
broad domains that can be applied to EOL care: (1) clinical project, Data Analysis and Reports for Toolkit Instruments
(DART), renes the toolkit and measures for users. Addi-
tional outcome measures suggested for improving EOL care
are shown in Table 397. A review of the current literature
Table 396 related to each tool in the kit can be found at http://www.
Areas for Improving Quality Care at the End of Life chcr.brown. edu/Teno.htm. Donabedian43 stated that achiev-
1. Physical and emotional symptoms ing and producing health and satisfaction, as defined for its
2. Support of function and autonomy individual members, is the ultimate validator of the quality
3. Advance planning of care. There has been limited research to date in exam-
4. Aggressive care near death, including preferences about ining satisfaction among terminally ill patients and fami-
site of death, CPR, and hospitalization lies. Yet, for most dying patients, satisfaction may be the
5. Patient and family satisfaction most important outcome variable for themselves and their
6. Global quality of life families.
7. Family burden Professor Irene J. Higginson, Ph.D., a leading researcher for
8. Survival time more than 15 years has been using the audit cycle, a feedback
9. Provider continuity and skill
process similar to QI methods, to improve outcomes in pallia-
10. Bereavement
tive care. Currently at Kings College School of Medicine and
Source: American Geriatrics Society (1996), reference 27. Dentistry and St. Christophers Hospice in London, England,
she notes the difculties in obtaining outcome information, such
To survive, health care systems must be able to change and

Table 397 improve. If the quality of EOL care is to improve, nurses will
Executive Summary of the Toolkit of Instruments
need to have expert knowledge about making change: how to
to Measure End-of-Life Care (TIME)
encourage it, and how to manage and to evaluate it within and
Chart review instrument, surrogate questionnaires, across organizations and settings. This knowledge needs to be
patient questionnaires coupled with the methods and know-how to produce change.
Measuring quality of life QI methods and tools are a powerful means for designing and
Examining advance care planning testing strategies to improve EOL care.
Instruments to assess pain and other symptoms
Instruments to assess depression and other emotional references
symptoms
Instruments to assess functional status 1. George S, Weimerskirch A. Total Quality Management: Strate-
Instruments to assess survival time and aggressiveness of care gies and Techniques Proven at Todays Most Successful Compa-
Instruments to assess continuity of care nies, 2nd ed. New York: John Wiley & Sons, 1998.
2. Deming WE. Out of the Crisis. Massachusetts Institute of Tech-
Instruments to assess spirituality
nology Center for Advanced Engineering Study. Cambridge:
Bibliography of instruments to assess grief MIT Press, 1986.
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experience Improvement Action Guide. Oakbrook Terrace, IL: Joint Com-
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o] a p p e n d i x 3 9 1
Sample CQI Study Proposal to Improve End-of Life Care
Using FOCUS-PDCA
40o] Sarah A. Wilson
Long-Term Care
You know Im a ghter, and if I wanted to ght I would . . . but I dont want to ght any more. I just
want them to leave me alone, no more tests. Dont let them do anything else, please promise me.
Mother, talking to her daughter
Key Points Quality end-of-life care in nursing homes is becoming more

The long-term care setting is the home for much of the elderly popula- important as the number of older adults increases, and managed
tion and a common setting of end-of-life care. care continues to minimize hospital stays. Nursing home resi-
Unlicensed personnel provide a substantial proportion of long-term dents are sicker today and have different care needs. Although
care and should be included in palliative care education efforts. nursing homes were not established as sites for terminal care,
Elderly residents in long-term care settings often have multiple they are becoming the place where many people do die. Statistics
chronic illnesses and complex medication regimens. on the place of death tell us little about the environment where
someone lived and died. This chapter addresses nursing homes,
the environment of nursing homes, the staff, the care of dying
residents, and model programs to support dying residents.
The terms institutional care and long-term care have been used
interchangeably in reference to nursing home care, although nei-
ther is synonymous with nursing home care.Long-term care refers
to a continuum of services addressing the health, personal care,
and social service needs for persons who need help with activities
of daily living due to some functional impairment.1 Services may
be provided in the home, the community, or a nursing home.
Before the late 1970s, nursing homes were the primary source
of care that could not be provided by families for persons need-
ing long-term care. Nursing homes have been described as the
offspring of the almshouse and boarding house and the
stepchild of the hospital.2 In the mid-19th century, older people
who were poor, sick, or disabled and without family support
had few options other than the almshouse.3 Private homes for
the aged emerged as an alternative to public almshouses after
the passage of the Social Security Act in the 1930s. Women who
were caring for their ill family members at home took in other
patients to help pay the bills. From these small homes, propri-
etary nursing homes evolved. When nurses were added to the
staff, the homes were referred to as nursing homes, a term that
continues to be used today.4
Growth of Nursing Homes
The growth of nursing homes from the 1930s to the 1960s was
related to six key factors2: (1) Old Age Assistance allowed a por-
tion of the elderly to directly purchase services; (2) payments
759
were made directly to facilities for the care of older adults, eas- because the use of nursing homes increases with age. For older
ing the states nancial obligations and creating a source of pay- adults residing in nursing homes, 34.6% are aged 75 to 84, and
ment for care; (3) construction loans and loan guarantees were 33.8% are aged 85 to 94.5 The characteristics and needs of nurs-
available through the federal HillBurton Act, the Small Busi- ing home residents have changed with the implementation of
ness Administration, and the Federal Housing Authority; the prospective payment system for Medicare. Nursing homes
(4) the KerrMills Program extended nancial participation to are experiencing changes in the reasons for admissions and
medically indigent older adults; (5) the American Association discharges. For example, the intensity of care has increased as
of Nursing Homes became a strong lobby for those with inter- more people enter nursing homes as a result of early hospital
ests in the new industry; and (6) the federal government began discharge. Some people are entering nursing homes for a rela-
in a limited way to develop some standards for nursing homes. tively short stay and rehabilitation, others are being discharged
The growth of nursing homes occurred largely by chance; how- home, and still others are being transferred to hospitals in the
ever, with the passage of Medicare and Medicaid in 1965, nurs- nal stages of life and ultimately die there.
ing homes became an industry. Persons who live to age 65 have more than a 40% chance of
Nursing homes continue to be a growing industry because living in a nursing home before they die, and this is likely to
people are living longer, with more complex health problems. increase to 46% by 2020.8 Death occurs more frequently
The latest data (2004) from the National Center for Health among older adults in institutions than at home among family
Statistics (NCHS) list 18,000 nursing homes, with 1.9 million and friends. A widespread belief is that the majority of older
beds and 1.6 million residents.5 The majority of nursing homes people die in hospitals. In fact, the older people are, the more
(66%) are proprietary or prot making.5 Nursing homes are likely they are to die in nursing homes.8 It is estimated that
licensed or certied to designate the level of care provided and 40% to 50% of all deaths will occur in long-term care settings
method of reimbursement. Approximately 82% of nursing by the year 2040.9 Although nursing homes were not estab-
homes are certied by Medicare and Medicaid. Skilled nursing lished as places for terminal care, they are increasingly becom-
facilities (SNFs) are those certied for Medicare funding. ing such facilities.
Medicare provides for up to 100 days of skilled care in a nurs-
ing home after a 3-day hospitalization. However, reimburse- Regulation of Nursing Homes
ment for nursing home care by Medicare is restricted by
narrowly dening what skilled is and by limiting the dura- Nursing homes are highly regulated. The number of rules and
tion of the skilled benet. The cost of nursing home care, regulations have led some to compare the regulations to those
averaging $61,320 year, is beyond the means of most Ameri- of nuclear power plants. The nursing home population is
cans.6 Rates for Medicaid reimbursement vary considerably viewed as a population of vulnerable adults who need protec-
from state to state. Most elderly who need nursing home care tion, which, in combination with the history of patient abuse
for more than a few weeks spend or liquidate all their resources by some providers, has led to a strong tradition of regulation
to qualify for Medicaid. by federal and state governments. Most of the effort in quality
assessment has been directed toward detecting problems; less
Population Demographics and Nursing Homes has been devoted to assessing and acknowledging good care.10
Almost 2 decades ago, concern with the quality of care in
The population of the United States continues to increase. nursing homes led Congress to commission the Institute of
One of the most signicant developments is the growth of Medicine (IOM) to study nursing homes. The recommenda-
the older population. The large number of people who were tions of the IOM Committee on Nursing Home Regulation,
born between 1946 and 1964, commonly referred to as baby as well as many consumer advocacy groups, led Congress to
boomers, contributes to the graying of America. Statistics enact major reforms in nursing home regulations as part of
from the 2000 census reect the inuence of baby boomers. the Omnibus Budget Reconciliation Act of 1987 (OBRA 87).11
Thirty million people are over 65 years of age and account for The intent of OBRA was to improve the quality of care by
12.4% of the population.7 Sixteen percent of the people aged 65 establishing a single set of certication conditions for all nurs-
and over are members of minority groups.7 The fastest growing homes.12 In addition, these regulations addressed resi-
ing age group in the United States are people aged 85 and over. dents care, rights, and quality of life. A key aspect of OBRA
The number of centenarians increased 35% between 1990 and 87 was that residents have the right to be free of physical
2000. It is projected that by the year 2011, the largest increase and chemical restraints. The emphasis of regulations shifted
will be in the group of people aged 65 to 74 years.1 The increase toward addressing outcomes of care. The Minimum Data Set
in the older adult population will have a major impact on (MDS), a standardized interdisciplinary assessment tool, was
health care in terms of services needed, delivery of health care, mandated for residents within the rst 14 days after admission,
and education of health care providers. Older persons have and whenever there was a signicant change in a residents
more health problems, use more health services, and are hos- condition.
pitalized more often for longer stays than younger persons. Some improvements have been noted in nursing homes
Five percent is most often cited as the proportion of older since OBRA 87 was implemented.12 The focus on residents
adults living in nursing homes. However, this is misleading rights and the empowerment of residents in care decisions have
Long-Term Care 761
been identied as one of the most signicant accomplishments ing home for 4 to 6 weeks for rehabilitation after an acute ill-
of OBRA.12 Perhaps most signicant, there has been an overall ness, such as a stroke or hip replacement. The long-term resi-
reduction in the use of both physical and chemical restraints. It dent is usually older than 75 and has numerous chronic
is signicant that OBRA included no provisions for improving diseases and functional and cognitive impairments. The aver-
reimbursement to increase stafng. The emphasis of OBRA age length of stay in a skilled nursing facility is 870 days from
was rehabilitation, restoration, and improvement in function, admission to discharge.14 Almost half (47.7%) of all nursing
not the provision of quality end-of-life care.13 home residents have some form of dementia.15 The 1999
National Nursing Home Study indicated that the typical resi-
Accreditation dent is a female, 85 years old and older, who needs assistance
with one or more activities of daily living and instrumental
Nursing homes may apply for voluntary accreditation by the activities of daily living.5 The long-term resident is much more
Joint Commission on Accreditation of Healthcare Organiza- likely to die in the nursing home or hospital. Older people who
tions (JCAHO), an organization created for the accreditation die in a nursing home have dying trajectory of fragility, with
of hospitals that has expanded to include home health agen- 60% having a diagnosis of a stroke or a hip fracture.16 Between
cies and nursing homes, among other health care institutions. 50% and 60% of all deaths in SNFs are residents with a diag-
The facility pays a fee for the inspection to determine if JCAHO nosis of dementia.16
standards are being followed. Some nursing homes that seek
JCAHO accreditation believe that it adds to a facilitys credi- Nursing Home Staff
bility and makes it more marketable to the consumer.
In summary, growth in nursing homes has been propor- Nursing homes and hospitals differ in the type of staff employed
tionate with the increasing elderly population, and the need and in stafng patterns. The acute care hospital has a higher
for long-term care services will continue to increase as the ratio of professional staff to patients than the nursing home.
population ages. Palliative care is an important component of Nursing assistants, the primary caregivers in nursing homes,
nursing home care. Along with understanding the structure of spend the most time with residents and constitute more than
nursing homes, it is important to consider the sociocultural 32% of a nursing homes full-time equivalent (FTE) employ-
environment of these institutions. ees. In comparison, registered nurses (RNs) constitute only
7.6% of the FTE employees.5 Licensed practical nurses (LPNs)
constitute 10.6% of the nursing homes FTE employees.5
o] Approximately 50% of SNFs do not have an RN on duty 24
Sociocultural Environment of Nursing Homes hours a day. Proprietary nursing homes have fewer RNs
(6.8%) per 100 beds than nonprot or government nursing
The sociocultural environment of long-term care differs from homes (9.1%).5
that of hospitals. Whereas hospitals must always have physi- The educational level and preparation of staff in the two
cians present, nursing homes are required only to have physi- types of institutions also differ. The LPN program may be
cian services available as needed. A medical director, full-time completed in 12 to 24 months and has a limited amount of
or part-time, is responsible for coordinating and directing res- educational content devoted to geriatrics, palliative care, and
ident services. death and dying. Most nursing assistants have not completed
high school, work for low pay, and receive few benets. The
Physician Involvement work assigned to nursing assistants is often difcult and stress-
ful, with little recognition of their contribution to resident care.
Physician visits to residents in nursing homes are often limited The IOM committee strongly supports the need to increase the
to once every 30 days. Federal regulations require physicians to number of professional nurses in nursing homes, noting that
make at least one visit every 60 days to nursing home resi- there is a clear connection between the RN-to-resident ratio
dents, in contrast to the acute care environment, where physi- and the quality of nursing care provided.17
cians usually see patients every day. The nurse in the nursing
home is responsible for communicating any changes in a resi- Public Expectations
dents condition to the physician. If the physician does not
respond in a timely manner, the medical director intervenes. The public and the family of nursing home residents may have
unrealistic expectations of nursing homes. It is a difcult deci-
Length of Stay sion for families to decide on nursing placement. Families
expect the same type of care to be provided in the nursing
The length of stay is either short term or long term. In most home that was provided in the hospital. For example, families
nursing homes, the length of stay varies, although there is may believe a physician will visit every day instead of once a
greater movement of residents into and out of nursing homes month. The media reinforces negative images of nursing
as a result of early hospital discharges. The short-term resident homes. Cases of abuse and poor management receive more
is usually someone under 75 years of age who stays in the nurs- attention in the media than positive images of nursing homes.
The sociocultural environment of nursing homes differs relationships can improve communication and impact the
from other health care institutions: the average length of stay quality of end-of-life care.
is longer, physician visits are less frequent, the primary care
providers are nursing assistants, and RNs constitute a small Symptom Management
portion of the homes FTE employees.
One of the major themes reported in the IOMs study of care at
the end of life was that too many people suffer from pain that
o] could be prevented or relieved with the use of existing knowl-
Studies of Death and Dying in Nursing Homes edge and therapies.26 Several studies have documented the poor
control of pain in nursing home residents.23,27,28 Instruments to
Early studies of death and dying focused on hospitals as the assess pain in residents with cognitive impairment are inade-
place of death. The attitudes of hospital staff toward dying quate. Issues related to pain management in nursing homes are
patients, the stresses encountered by nurses in caring for dying reviewed below, and a comprehensive discussion of pain assess-
patients and families, and communication with dying patients ment and management are found in Chapters 5 and 6.
and families were described in these studies.1821 More recent Palliative care educational programs have been effective in
studies of death and dying have focused on other settings, improving pain mangement in nursing homes.27,28 Froggatt27
including nursing homes. The setting of care has a direct inu- evaluated an educational program for nursing home staff
ence on the older adults quality of life at the end of life.22 Stud- that included RNs and nursing assistants. Pain management
ies of death and dying in nursing homes have examined family improved; however, the program did not appear to have an
perceptions of care, symptom management, educational needs impact on institutional practices and policies regarding end of
of staff, and barriers to quality end-of-life care. life. Weissman and colleagues28 designed an educational pro-
gram to enhance institutional commitment to pain mange-
Family Perceptions of Nursing Home Care ment. Multiple facilities (87) participated in the project and
sent two or three staff members to full-day education classes
Teno23 conducted the rst large national study to examine fam- on pain management. Participants developed an action plan
ily perspectives on the quality of end-of-life care in institu- to change facility practice and policies regarding pain manage-
tional settings and home. Family members were surveyed to ment. Fourteen target indicators, based on standards devel-
determine if the adequacy or quality of end-of-life care dif- oped by the American Pain Society and Agency for Health
fered in hospitals, nursing homes, and home. A mortality Care Policy and Research, were used to evaluate changes in
follow-up survey was used, and 1,578 decedents were repre- practice and policy. The indicators included: use of standard-
sented. Nearly one fourth of all respondents reported the ized assessment and ow sheets; education of staff, residents
patient did not receive adequate treatmeant for pain and dys- and families; establishment of an interdisciplinary pain team;
pnea. Family members of persons whose last place of care was and institutionalization of pain assessment and management
a nursing home or a home with home health nursing services polices and quality-improvement standards and processes.
had higher rates of reported unmet needs for pain compared Facilities averaged 8.8 indicators in place at the completion of
with persons who had home hospice services. One quarter of the project. This was a signicant improvement from the base-
the families reported problems with physician communication. line score of 3.4 indicators. Weissman acknowledged that some
Nursing home residents were less likely to have been treated indicators were more difcult to change. For example, only 19
with respect at the end of life. The family members of dece- facilities had established a pain-education program for staff at
dents who received home hospice care were more likely to the completion of the program.
report a favorable dying expereince.23
Wilson and Daley,24 as a part of larger study of death and Educational Needs of Staff
dying in nursing homes, interviewed family members whose
relatives died in nursing homes. Family members described The educational needs of staff have been identied in several
caring behaviors of staff that were helpful to them. The pri- studies.25,2732 Kayser-Jones and Hanson reported that staff
mary concerns expressed by these family members were lack often lack knowledge of how to assess and manage symptoms
of spiritual care in some facilities and not being present when in nursing homes.30,31 Wilson and Daley conducted focus
their relative died because they were not notied in time by the group interviews with 155 participants in 11 nursing homes to
nursing home staff. identify the learning needs of staff.25 Staff identied the need
Cartwright13 reviewed nursing research in nursing homes for education about pain management and comfort measures,
and assisted-living facilities as places of care for the dying. She grief management, communication skills, and spiritual care.
noted that a large discrepancy exists between family and staff Ersek, Kraybill, and Hansberry32 reported ndings similar to
perceptions of the quality of end-of-life care in nursing Daley and Wilson in their preliminary studies of educational
homes. Wilson and Daley reported that positive long-term needs of staff providing end-of-life care in nursing homes.
relationships exist between staff, residents, and families in Daley and Wilson29 developed a continuing education pro-
nursing homes.25 There is clearly a need to examine how these gram to address the learning needs of nursing home staff. One
Long-Term Care 763
of the content areas dealt with how to communicate with pain management. Further study needs to be done to learn
physicians. Nurses were provided with a guide for telephoning more about the experience of dying in long-term care facili-
physicians about pain that covered how to prepare for the tele- ties. Institutional policies and practices need to change to
phone call and what assessment data to report. Steps in prepar- achieve better outcomes in the management of pain.
ing to make the call included stating the purpose of the call, The next section explores issues related to the care of dying
enumerating goals for the resident, and dening what they residents in nursing homes, including advance directives, eth-
would like to have happen. Assessment data included such ical issues, spiritual support, provision of hospice services,
information as location, intensity, and quality of pain, what support for dying residents and their families, and recognition
made it better or worse, and what medications had been tried. of the impact of loss on staff.
Nurses were encouraged to develop a standard form to record
information. Six to 8 weeks after the continuing education
program, participants were asked to describe how they used o]
information from the course. Nurses indicated that they were Caring for Dying Residents
more comfortable talking to physicians on the phone and used
a more assertive approach. Nursing assistants increased their A number of issues relate to providing quality end-of-life care
knowledge of what information to report to nurses. Since in the nursing home environment. Nursing home staff, espe-
nursing assistants spend the most time in direct care activities, cially RNs, can make signicant contributions to enhance ter-
it is important that they are included in efforts to promote minal residents quality of life.
comfort.
Advance Directives: Where Are the Letters
Barriers to Quality End-of-Life Care of Preference?
The nursing home environment has some barriers to quality Nursing home residents have the right to participate in deci-
end-of-life care. Pain management is an area of concern. sions about their care, including end-of-life care. The passage
Physicians are dependent on nurses to assess and to report of the federal Patient Self-Determination Act (PSDA) in 1990
pain and may be unaware of measures that can be used to con- required all health care agencies that receive federal funding to
trol pain in nursing homes. For example, some physicians are recognize advance directives. The purpose of the PSDA was
unaware that morphine can be given intravenously in many to encourage greater awareness and use of advance directives.
nursing homes. In addition, LPNs receive little education in OBRA 87 regulations emphasized that residents have the right
pain management. Nursing homes are extremely concerned to self-determination, including the right to participate in care
about state and federal regulations and have few protocols for planning and the right to refuse treatments. Residents are usu-
pain management. Pain management is further complicated ally informed of their rights, including the right to advance
by the large number of cognitively impaired residents who are directives at the time of admission to the nursing home, a stress-
unable to communicate if they are in pain. ful time for both resident and family members. Families report
There is a lack of evidence-based research in the delivery of making these decisions in the context of guilt and overwhelm-
model programs for quality end-of-life care in nursing homes. ing burden related to nursing home admission. There is a large
Weissman and colleagues work on building an institutional number of nursing homes residents with dementia who have
commitment to pain management in nursing homes is one of no advance directive or family member to make decisions on
the few evidence-based practice studies.28 Many nursing homes their behalf.33
are apprehensive about participating in research studies When protocols are used to learn what residents want in
because of the costs involved, both monetary as well as staff terms of end-of-life care, there is a decrease in transfer and
time required. Studies are needed to address issues of protec- hospital death at the end of life.22 Little has been written about
tion of study subjects, since many elderly persons in nursing the unique situation of chronically seriously ill older adults
homes are unable to give informed consent. It is important and their families.9
that the researchers clearly explain the purpose(s) of the
research and its objectives, the potential benets to the nursing Ethical Issues
home, the time and costs involved, and the amount of staff
involvement necessary. Researchers should meet with nursing Autonomy is based on the assumption that an individual is the
home administration and staff during the course of the study best judge of what is in his or her best interest. Nursing homes
to discuss the study progress and identify any problems. They have been criticized as dehumanizing and promoting depend-
should also meet with family members to explain the research ence. Autonomy gives meaning to ones life and, in relation to
project. Once the study is completed, the researchers should nursing homes, it means being able to direct and inuence
provide feedback to the nursing home. others in decisions regarding daily living situations.34 The
In summary, studies of death and dying in nursing homes routines, regulations, and restricted opportunities in nursing
have described family perceptions of care, the educational homes have been described as enemies of autonomy, and the
needs of staff in providing end-of-life care, and problems with regimentation contributes to a loss of control. Most nursing
homes were designed based on a hospital or medical model of she could agree to thiseverything should be done for
care, which focuses on routines and tasks. The medical model Mother. The brother called Evergreen and informed the staff
tends to foster a paternalistic approach of we know what is that he was not in agreement with this decision and would
best. The physical environment of the nursing home also lim- visit his mother this weekend.
its autonomy. Space is limited, with most residents sharing a o]
room and toilet facilities that restrict privacy and space for
What are the issues in this case? Who should be involved in
personal possessions. Residents may also wander in and out of
making decisions? Why might this be difcult for the son?
others rooms. The environment could be more individualized
What are Marys wishes? What are the the benets or conse-
by using personal furnishings and creating a homelike com-
quences of this decision? Would the American Nurses Associ-
mon area, such as a dining room.
ation (ANA) Code of Ethics be useful in making a decision?
One of the most difcult and sometimes controversial eth-
What are the roles of the nurse and physician in this case?
ical issues involves decisions regarding food and hydration.
Should anyone else be involved? What needs to be done? What
Food in all societies is part of the ongoing cycle of daily inter-
can be learned from this case?
action and activity around which much of family life is organ-
To answer the above questions, consider the following: Is the
ized and which is symbolic of life and caring. Families may
primary issue whether Mary should go to the hospital for treat-
continue to try to feed their relatives when they are no longer
ment of the respiratory tract infection? What does Mary mean by
able to eat. Nursing home staff can assist families by explain-
I dont want anything done to prolong my life? Ask her to
ing that it is normal to lose appetite at the end of life and that
explain this. Could Mary remain at the nursing home and be
the body only takes in what it needs. Trying to force someone
given oral antbiotics to treat the respiratory infection? Can a
to eat may cause more harm than good. Families should
patient who is alert and oriented decide what treatment he or she
understand that there is a risk of aspiration as a person gets
wants? Would a family conference be helpful to discuss what it
weaker. Nursing staff may encourage families to offer small
means to prolong life and what advance directives are? Could the
amounts of liquids, ice chips, or Popsicles.
son have some guilt feelings because he does not see his mother
The following case study illustrates some of the ethical
very often? Perhaps the son thinks that not having anything done
issues at the end of life in nursing homes.
means no treatment or care. This needs to be explained to him. It
would be helpful to clarify what Mary wants to be done. Con-
9= sider what the outcomes would be if Mary had treatment or did
case study not have treatment. The ANA code of ethics addresses respect for
Marys Decision the dignity and worth of all persons, the persons right to self-
determination, and the primacy of the patients interest. How do
Mary, an 82-year-old woman, was admitted to Evergreen
these principles apply to this case? Consider if Mary wants to dis-
Nursing Home after a hospitalization for pneumonia. Prior
cuss this decision with anyone else. Perhaps clergy? Does this case
to the hospital admission, Mary lived by herself in an apart-
illustrate the importance of advance directives and the need for
ment. She has two adult children, one daughter who is single
communication among all involved?
and lives close to Mary, and a son who lives 200 miles away.
The daughter either visits or calls Mary every day, and the
son calls about once a month and visits infrequently. Mary Providing Support to Dying Residents
has had multiple hospital admissions this past year for a vari- and Their Families
ety of health problems, including congestive heart failure,
urinary tract infections (UTIs), and dehydration. While in Nursing home staff may provide support to dying residents
the hospital, Mary received IV antbiotics for UTI and pneu- and their families in coping with the eventual loss of the fam-
monia. She became very confused in the hopital and, ily member. It is important that nurses communicate openly
although the confusion decreased after a few days, Mary was with families, explain changes in the patients/residents condi-
much more fragile. She was not able to manage at home by tion, and answer questions honestly. Listening is an important
herself, so the decision was made to admit her to Evergreen. communicative skill. Active listening is usually more helpful
Mary has adjusted well to the nursing home admission and than judging or giving advice. Effective active listening skills
continues to have frequent contact with her daughter. She has include being able to convey that you want to listen, that you
recently developed a respiratory tract infection and the staff want to be helpful, and that you accept the others feelings.
is considering hospital admission. Mary does not want to go When communication is a concern for staff, it may be helpful
to the hospital, and she does not want anything else done. to role-play some representative situations. For example, role-
Mary informed her daughter of her decision not to be hospi- playing can teach what to say on the telephone when inform-
talized and commented, I dont want anything done for the ing a family member that their relative is dying and how to
sake of prolonging my life . . . God will call me when its help families decide about options.
time. The daugher was in agreement with Marys decision Families have identied a number of caring behaviors of
and called her brother to inform him of the decision. The nursing staff that helped them cope with the eventual loss of
brother was very upset with this phone call and asked how their relative.35 It was important to families for staff to take the
Long-Term Care 765
time to come to residents rooms and ask how they were doing. refers to feelings, beliefs, and behaviors associated with a faith
Families also identied that listening to the familys concerns community. Spiritual needs include the need to see ones self as a
and getting answers to their questions were helpful. Staff also person of worth and value, to love and be loved, and to have
demonstrated concern for families in other ways, such as ask- meaning and purpose in life.36 Spiritual support is an integral
ing if they would like a cup of coffee or getting a comfortable part of supportive care. The search for meaning or spiritual com-
chair for a family member. Families appreciated the fact that fort at the end of life is often guided by religious or philosophical
the staff respected their privacy and seemed to know when beliefs. Spiritual well-being in relation to the end of life has been
they wanted to be left alone. described as meaningful existence, ability to nd meaning in
It is important for families to understand the dying process. daily experience, ability to transcend physical discomfort, and
Staff may explain signs and symptoms of approaching death to readiness for death.37 Families and residents may fear the
families and keep them informed of what is changing and why. If future and have questions about life in general. Residents are
the family is not present, they should be kept informed by tele- usually asked about their religious afliation and the name of
phone. Family decisions, such as being present at the time of their clergy at the time of admission to most nursing homes,
death or not being present, should be respected. Every effort but, unfortunately, this may be the only time spirituality is men-
should be made to notify families early enough that they may be tioned. Spiritual needs vary and can change at the end of life.
present at the time of death, if that is their wish. Families may be Private, religiously afliated nursing homes usually have
encouraged to reminisce together. They may participate in pro- pastoral care available, and most have a room that is designated
viding care by holding a hand or giving a back rub. Staff should as a chapel. Many nursing homes have funeral and memo-
remind families that even though the family member cannot rial services for residents. Nonprivate nursing homes usually
respond, the sound of familiar voices may be a source of comfort. attempt to make arrangements for pastoral care through vol-
There are some barriers to providing support for dying res- unteer clergy in the community. Some have been successful
idents and families in the nursing home environment. The with these arrangements, but some nursing home staff have
lack of privacy in most nursing homes is a problem, and it is stated that it is difcult to nd clergy when needed.
often difcult to nd a private area to talk to families and res- Meeting the spiritual needs of dying residents and their
idents. One social worker commented that dying is almost a families has been identied as an educational need of nursing
public spectacle in the nursing home. Another barrier is the home staff.29 Staff often are aware of spiritual needs but are
lack of staff time to spend with dying residents and families, as unsure of what to do or say and what would be considered
the stafng patterns of most nursing homes do not take into acceptable to their facilities in meeting spiritual needs. Staff
account labor-intensive care at the end of life. may use a number of interventions to provide spiritual care,
including praying with the resident and family, reading the
Providing Spiritual Support Bible or other religious works, singing hymns, and providing
therapeutic presence, all of which may help decrease the lone-
An important component of palliative care is spiritual support. liness and separation persons are experiencing. When a resi-
Spirituality is often associated with religion, but the two are dent is expressing a spiritual need, the following matrix (Table
not identical. Religion is a means of expressing spirituality and 401) may be useful in responding or making suggestions.
Table 401
Spiritual Needs: Examples of Needs and Suggested Responses
Need Danger Sign Response Suggestions
To be person of worth Person says, I cant even get God loves you. I like you just Address residents with their
dressed. Ive made a mess of the way you are. names to conrm their value
my life. and worth.
Person arranges to get ignored, such Spend time with them.
as someone who avoids interactions Find tasks the resident
with others or withdraws can do.
from interactions.
Love and to be loved People who are lonely Express your feelings to resident. Help resident recall
memories of being loved.
Meaning and purpose Not being able to do what they Convey that resident did and does Assist resident with other
used to make a difference. You have let me meaningful activities:
Why am I still here? journey with you. Part of the gift journaling, helping other
I get is that you let me take care of residents, praying for others.
you and experience you as a person.
With proper staff education and training, most barriers to the specic problems of a subsetthose nursing home resi-
providing spiritual support in nursing homes can be elimi- dents who are near death. Exemplar programs are described
nated. Continuing education programs need to be developed below.
to address staff needs for education on spirituality. Staff need
to know the facilitys policies regarding spiritual care. Many Kansas City Regional Long-Term Care
nursing homes do not have a space designated as a meditation Ethics Consortium
room or chapel. It is important for families and residents to
have a private, quiet area where they can meditate. If pastoral Ethical issues are encountered by most health care institutions in
care is not available in the nursing home, it may be arranged the delivery of care, and nursing homes are not an exception.
by contacting local clergy or lay leaders in the community. When ethical dilemmas do arise, in-house resources may not be
available to resolve the issue, and the nursing home may not have
Providing Support for Staff an ethics committeee. The Kansas City Regional Long-term Care
Ethics Consortium, supported by the Midwest Bioethics Center,
Nursing staff form an attachment to residents that may be developed policy guidelines and ethical consultation and educa-
dened as a strong emotional bond and connectedness that tion for long-term care facilities. The mission of the Consortium
develops between residents and staff over time.35 Attachment is to provide a supportive network for people who serve long-
is fostered by staff efforts to treat residents as family. The term care residents either directly or indirectly. The Consortium
nursing home is home for many residents, as some live there has monthly meetings, quarterly case reviews, and educational
for years, so that staff often experience feelings of loss and sad- programs. It provides an opportunity for long-term care profes-
ness when a resident dies. sionals to come together and discuss problems and learn from
Staff members need to be able to talk about their feelings of each other. They have been active in advancing palliative care in
loss when a resident dies. It is necessary for nursing homes to long-term care. Information about the program may be obtained
develop programs to assist staff in coping with the loss of a res- from http://www.midbio.org.
ident. Allowing staff time to talk about a resident at staff meet-
ings, sharing memories of a resident, and planning a memorial Abides Ministry
for residents who have died may be helpful. Other staff mem-
bers should acknowledge that the loss must be difcult when Abides Ministry addresses a variety of the needs of dying resi-
they know a particular staff member was close to a certain dents. It is a model program developed by Luther Manor, a
resident. long-term care facility in Milwaukee, Wisconsin. The program
The loss of a resident may also be stressful for other nurs- was initiated when a group of nurses began talking about how
ing home residents. Residents develop friendships with other important it was to sit with residents who were dying. Mem-
residents over time; they may have shared a room with the res- bers consist of staff who volunteer after-hours, residents at
ident or sat next to the resident for meals. The death may Luther Manor, and others from the community who want to
remind residents of their own mortality. Residents may want be present for those who would otherwise die alone.
to attend the funeral of the deceased resident, or the nursing The Abiders try to anticipate the needs and wishes of dying
home may have a memorial service or time of remembrance. residents. Abiders sit with a resident and read Bible passages,
Staff should acknowledge the loss and what it means to other sings hymns, or most often just hold a residents hand. Abiders
residents. stay with the dying resident 24 hours a day. They also provide
In summary, the nursing home environment inuences the relief for family members. Other nursing homes have developed
care of residents at the end of life. Nursing home staff need to similar programs using volunteers to sit with dying residents.
be comfortable talking with residents and families about death
and dying. Knowledge of pain management is as important in Palliative Care and Hospice Care in Nursing Homes
nursing homes as it is in other settings. Families should be
included in the care of dying residents, and their need for pri- Several nursing homes have contracts with hospices for ser-
vacy should be respected. Several model programs have been vices. Because the nursing home is considered the residents
developed to address the unique needs of nursing homes, as home, he or she may be eligible for Medicare hospice benets
described in the next section. under home care. The hospice staff is responsible for the plan
of care, and any changes in the treatment plan must be dis-
cussed with and approved by the hospice case manager. The
o] hospice nurse visits the nursing home, arranges the assessment
Model Programs to Provide Support of the resident, and schedules nursing assistance to provide
to Dying Residents personal care. The resident is provided with services that would
otherwise not be available.
A number of nursing homes throughout the United States Coordinating hospice care in a nursing home requires good
have developed model programs to provide support to dying communication between the nursing home staff and hospice
residents and their families. Some of these programs deal with staff. Nursing home staff may view the hospice staff as outsiders.
Long-Term Care 767
Nursing home staff frequently believe that they know the resi- of each resident whose guardian consented were displayed in
dent best because they interact and care for the resident every the room. Each facility provided a lounge for the project. Res-
day, whereas hospice staff members may see the resident only idents ate their meals in the lounge, which became a center for
two or three times a week. Although hospice care is a benet to activities.
residents, some question why special services are available to Case managers for the project were selected by the director
one group of residents and not to all residents. Hospice care in of nursing in each facility. The case manager led the interdisci-
nursing homes results in better symptom mangement and plinary team at the facility and assisted with developing and
improved quality of life at the end of life.9,13 However, hospice implementing individualized care plans. Case managers received
is underutilized in nursing homes.9 Information on palliative formal classes in hospice care, care planning, assessment tech-
care and hospice care in nursing homes may be found at the niques, and case management from the researchers. In addi-
National Hospice and Palliative Care Organization website: tion, an all-day conference was held for all staff involved in the
http://www.nhpco.org. project. Classes focused on hospice concepts, dementia, treat-
ment of behaviors associated with dementia, and activity pro-
Hospice Households for Persons with gramming, as well as family and spiritual care. The conference
End-Stage Dementia generated interest and enthusiasm for the project.
Five main programs goals were identied that are consis-
The Hospice Households Project for persons with end-stage tent with hospice goals: comfort, quality of life, dignity, sup-
dementia is an example of an innovative approach that applies port for family, and support for the staff. The goal for comfort
hospice concepts in nursing homes.35,39 Although the diag- was that staff be able to tell when a resident was experiencing
nosis of cancer is one of the common diagnoses of hospice discomfort and when a resident was not. Staff used physical
patients, cancer is a less common diagnosis among elderly and behavioral assessment skills to recognize discomfort.
hospice patients in long-term care. The care of persons with When a resident displayed a change in behavior, he or she was
end-stage dementia differs from the care of persons with end- evaluated for signs of constipation and for signs and symp-
stage cancer in that the course of cancer is more predictable. toms of common infections, such as urinary tract infection
Persons with cancer often have problems with pain, nausea, using a leukocyte esterase dipstick. Urinary tract infections
vomiting, and breathing. These problems are less common in were common. If the cause for discomfort was not clearly
persons with end-stage dementia. The person with end-stage identied, a behavioral intervention, such as distraction, quiet
dementia is unable to communicate needs and has severe time in the residents room, or music therapy, was initiated. All
impairments in cognitive and social abilities. Careful assess- residents had orders for Tylenol as needed. If the resident dis-
ment is essential to determine possible causes of discomfort in played behavior such as agitation or perseverance and behav-
persons with end-stage dementia. ioral interventions were not effective, nurses were instructed
Five hospice households were developed in three nursing to administer Tylenol rather than a chemical restraint. To pro-
homes in Milwaukee, Wisconsin for residents with end-stage mote the goal of quality of life, each resident had a schedule
dementia. The project was guided by the following research of activities that balanced sensory-calming and sensory-
question: What is the effect of hospice-oriented care on com- stimulating activities. Staff had identied that residents often
fort, physical complications, and behaviors associated with received too much stimulation from the environment.
dementia for nursing home residents with a dementing ill- The goal of human dignity was enhanced by treating all
ness? residents in a kind and caring manner and respecting resident
Residents were eligible to participate in the study if they choices when possible. A written care plan was developed for
had a diagnosis of irreversible dementia, had a score on the each resident to aid communication. Interventions were devel-
Short Portable Mental Status Questionnaire that indicated oped to include the goal of the family being an integral part of
severe cognitive impairment, were unable to participate in care planning. Families were surveyed at regular intervals to
group programming for persons with dementia, had a func- determine their satisfaction with care. A bulletin board was
tional behavior prole score of less than 40, and had advance hung for families to share information, and a periodic family
directives that requested no cardiopulmonary resuscitation night was held that focused on friendship and support. The
(CPR) be initiated. The researchers met with family members nal program goal was that staff have an understanding of
to explain the study and asked for permission for the relative behaviors associated with dementia and receive support from
to participate. Residents who met the criteria for participating one another. Staff participated in educational programs, and
in the study were assigned to a treatment group or control every effort was made to assure that the project had sufcient
group. The treatment group received the intervention and were staff to achieve its goals.
part of the hospice households. This project demonstrated that hospice concepts may be
The hospice households were clustered on six-to-eight-bed incorporated into the care of persons with end-stage dementia
areas on units that had 22 to 44 beds. The intention was not to with little additional cost to the facility. The facilities that par-
isolate residents on a distant unit. The households were made ticipated in the project did not require any additional staff. A
as homelike as possible by using colorful afghans, pillows, statistically signicant difference in levels of discomfort was
home furniture, and plants. Pictures and biographical sketches established between the treatment and control group, and
behaviors associated with dementia were lessened in the treat- work. Nursing assistants should be provided with training for
ment group, although this difference was not large enough to their jobs, and salaries should be increased. Efforts need to be
be statistically signicant. Staff reported increased job satisfac- made to include nursing assistants as part of the team.
tion as a result of participating in the project.35,37
Environmental Modications
o] The environment of nursing homes needs to be changed to

Recommendations for Change promote resident autonomy and quality of life. Residents
should be consulted about the type of living arrangement they
The quality of end-of-life care in nursing homes can be im- prefer. For example, some residents may prefer a single room
proved. The following are some recommendations for change: with space for personal belongings, while others may appreci-
(1) Reimbursement for nursing home care needs to be increased; ate sharing the room with someone for companionship. Nurs-
(2) nursing home staff should include more professional staff, ing homes should be designed to accommodate residents
and the ratio of staff to residents should be increased; (3) envi- preferences. Common areas, such as the dining room and
ronmental modications should be made to improve quality of lounge, need to be more homelike, with separate conversa-
life and human dignity; and (4) hospice and palliative care con- tional areas. Space should be designated for a meditation
cepts should be incorporated in nursing homes. room to allow residents and families a quiet place. The elderly
in nursing homes are often deprived of natural light. Some
Reimbursement simple environmental modications may improve the older
adults visual abilitiesfor example, using colors to enhance
Reimbursement and regulations in nursing homes are often contrast, using curtains to control glare, and placing chairs in
impediments to quality end-of-life care. Policy makers and the positions to enhance illumination. Biological changes occur
public need to be educated about the cost of nursing home within the brain in response to different levels of bright-light
care. Reimbursement should change from an emphasis on exposure, and these biochemical changes may affect hormones
procedures to a focus on continuing comfort measures and and neurotransmitters responsible for regulating mood, energy,
palliation. Nursing homes receive most of their revenue from sleep, and appetite.38 Rosenthals39 work on seasonal affective
private-pay residents and Medicaid. Medicaid rates need to be disorder describes the effect of seasons and light and dark on a
increased to reect the labor-intensive nature of long-term persons mood and energy level. In the fall and winter months,
care. The IOM26 recommends that additional research projects when its dark and cool, people may be more prone to depres-
on the use of nancial and other resources to improve quality sion and lethargy. Most people feel better on days when the
of care and outcomes in nursing homes be funded. An issue sun is shining. The nursing home enivironment may be mod-
closely related to reimbursement is the number and type of ied to make better use of light by using broad-spectrum u-
staff in nursing homes. orescent lights and daylight-simulating lights.
Nursing Home Staff Incorporation of Hospice and Palliative Care Concepts
The relationship between the ratio of RNs to residents and qual- Palliative care concepts should be an integral part of nursing
ity of care has been clearly established in nursing homes.17,22,26 home care. The emphasis of care should be directed toward
Considering the projected growth in the elderly population, the quality of life at the end of life. Both the resident and fam-
the need for RNs in nursing homes is expected to increase. In ily should participate in care planning. The nursing home
addition, nursing home residents will be sicker as a result of environment should be a therapeutic milieu that addresses the
shorter hospital stays. A major barrier to increased stafng in physical, psychological, social, and spiritual needs of all resi-
nursing homes are the scal limits of government support. RN dents. Research by nurses is needed to improve end-of-life care
salaries are lower in nursing homes than in hospitals, and in nursing homes. Nurses can make a difference in the quality
vacancy rates are higher.26 Nursing homes are starting to use of end-of-life care in nursing homes. It is hoped that the
advance practice nurses to deal with the complex needs of reader will incorporate some of the suggestions discussed in
older adults. Advance practice nurses, geriatric nurse practi- this chapter to make a difference in the delivery of end-of-life
tioners, and clinical specialists in geriatrics can improve out- care for nursing home residents.
comes and contribute to the quality of care.
Nursing assistants provide the most direct care for resi-
dents and have the least amount of training. Their work is references
often difcult, with few rewardssalaries are low and there
are few benets. The care provided by nursing assistants is 1. Miller CA. Nursing for Wellness in Older Adults: Theory & Prac-
important to residents quality of life, yet they are often paid tice. Philadelphia: Lippincott Williams & Wilkins, 2004.
little more than minimum wage. Interaction with professional 2. Kane RL. The evolution of the American nursing home. In: Bin-
staff is limited due to the demands of the nursing assistants stock RH, Cluff LE, Von Mering O, eds. The Future of Long-Term
Long-Term Care 769
Care: Social and Policy Issues. Baltimore: Johns Hopkins Uni- 22. Mezey M, Dubler NN, Mitty E, Brody AA. What impact do set-
versity Press, 1996:145168. ting and transitions have on the quality of life at the end of life
3. Holstein M, Cole TR. The evolution of long-term care in Amer- and the quality of the dying process? Gerontologist 2002;42:5467.
ica. In: Binstock RH, Cluff LE, Von Mering O, eds. The Future of 23. Teno JM, Clarridge BR, Casey V, Welch LC, et al. Family perspec-
Long-Term Care: Social and Policy Issues. Baltimore: Johns tive on end of life care in the last place of care. JAMA 2002;291:
Hopkins University Press, 1996:1948. 8893.
4. Ignatavicius DD. Introduction to Long-Term Care Nursing: 24. Wilson SA, Daley BJ. Family perspectives of dying in long-term
Principles and Practice. Philadelphia: F. A. Davis, 1998. care. J Gerontological Nurs 1999;25:1925.
5. National Center for Health Statistics. Health United States, 2003. 25. Wilson SA, Daley BJ. Attachment/detachment: forces inuenc-
DHHS Publication No. 2003-1232. Hyattsville, MD: U.S. Depart- ing care of the dying in long-term care. J Palliative Med 1998;1:
ment of Health and Human Services, 2003. 2134.
6. Adler, J. Cost of Nursing Home Rooms Jumps. Chicago Tribune. 26. Institute of Medicine. Approaching Death: Improving Care at
August 31, 2003. the End-of-Life. Washington, DC: National Academy, 1997.
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States: 2002. Washington, DC: U.S. Government Printing Ofce. nursing homes. Int J Palliative Nurs 2000;6:140146.
8. Spillman BC, Lubitz J. New estimates of lifetime nursing home 28. Weissman DE, Grife J, Muchka S, Matson S. Building an insti-
use: have patterns of use changed? Med Care 2002;40:965975. tutional commitment to pain management in long-term care
9. Matzo ML, Sherman DW. Gerontological Palliative Care Nurs- facilites. J Pain Symptom Manage 2000;20:3543.
ing. St. Louis: C.V. Mobsy Press, 2004. 29. Daley BJ, Wilson SA. Needs assessment in long-term care facili-
10. Kane RA. Long-term care and a good quality of life: bringing ties: linking research and continuing education. J Contin Educ
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11. Institute of Medicine (IOM). Improving the Quality of Care 30. Kayser-Jones J. A case study of the death of an older women in a
in Nursing Homes. Washington, DC: National Academy Press, nursing home: are nursing care practices in compliance with
1986. ethical guidelines? J Gerontological Nurs 2000;26(9):4854.
12. Marek KD, Rantz MJ, Fagin CM, Krecki JW. OBRA 87: has it 31. Hanson LC, Henderson M. Care of the dying in long-term care
resulted in better quality care? J Gerontological Nurs 1996;122: settings. Clin Geriatr Med 2000;16:225237.
2836. 32. Ersek M, Kraybill BM, Hansberry J. Investigating the educa-
13. Cartwright JC. Nursing homes and assisted living facilites as tional needs of licensed nursing staff and certied nursing assis-
places for dying. Ann Rev Nurs Res 2002;20:231266. tants in nursing homes regarding end-of-life care. Am J Hospice
14. Gabriel CS. Characteristics of elderly nursing home current res- Palliative Care 1999;16:573582.
idents: data from the 1997 National Nursing Home survey. 33. Tilly J, Weiner J. Medicaid and end of life care. State initatives in
Advance Data 1997;312: 116. end of life care. Kansas City: Midwest BioEthics Center, 2001.
15. Magaziner J, German P, Zimmerman SI, Hebel HR, Burton L, 34. Semradek J, Gammoth L. Prologue to the future. In: Gammoth
Gruber-Baldini AL, et al. The prevalence of dementia in a LM, Semradek J, Tomquist EM, eds. Enchancing Autonomy in
statewide sample of new nursing home admissions aged 65 and Long-term Care: Concepts and Strategies. New York: Springer,
older: diagnosis by expert panel. Epidemiology of dementia in 1997.
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dents. J Am Geriatr Soc 2002;50:11081112. 36. Weinrich C. Spiritual needs of the dying. In: Wilson SA, Daley
17. Mass M, Buckwalter K, Specht J. Nursing staff and quality of BJ, eds. Fostering Humane Care of Dying Persons in Long-Term
care in nursing homes. In: Institute of Medicine. Nursing Staff in Care: A Guidebook for Staff Development Instructors. Milwau-
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18. Germain C. Cancer Unit: An Ethnography. Wakeeld, MA: ventions on behaviors, discomfort, and physical complication of
Nursing Resources, 1979. end-stage dementia nursing home residents. Am J Alzheimers
19. Glaser BG, Strauss AL. A Time for Dying. Chicago: Aldine Pub- Dis Other Demen 1996;11(4):715.
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20. Mumma CM, Benoliel JQ. Care, cure, and hospital dying trajec- of action of light in seasonal affective disorder. Pharmacopsychi-
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21. Sundnow D. Passing On: The Social Organization of Dying. 39. Rosenthal NE. Diagnosis and treatment of seasonal affective dis-
Englewood Cliffs, NJ: Prentice-Hall, 1967. order. JAMA 1993;270:217221.
41o] Paula Milone-Nuzzo and Ruth McCorkle
Home Care
I always thought I would want to continue ghting if I had a diagnosis of a terminal illness. Last
year, I was diagnosed with terminal lung cancer. The most important thing on my mind was being
able to manage the pain. I was less concerned about the disease than the pain. The nurses helped
me to manage my pain effectively while being alert enough to interact with and enjoy my family. I
am so grateful to have their support.A terminal cancer patient
Key Points Originally, palliative care in home care nursing was associated
Home care for terminal patients can be used to improve their with patients who were clearly near the end of life. The con-
quality of life. Often, home care interventions can be provided on a temporary philosophy of palliative care had its beginnings in
short-term basis when clients experience a crisis that needs focused England in 1967, when Dame Cicely Saunders founded St.
interventions. Christophers Hospice. Home and respite care continue to be a
Nurses are the leaders and essential members of the home care major component of that program. Palliative care, by deni-
team. Advanced practice nurses can have an impact on the cost and tion, focuses on the multidimensional aspects of patients and
quality of care provided to terminally ill patients. families, including physical, psychological, social, spiritual,
Patients with complex problems need family caregivers who are and interpersonal components of care. These components of
taught to provide care in the home. Caregiving can be extremely care need to be instituted throughout all phases of the illness
stressful for family members and may adversely effect the health of trajectory and not only at the point when patients qualify for
the caregiver. Home care providers should assist family caregivers to hospice services. Palliative care also needs to be given across a
maintain their health. variety of settings and not be limited to inpatient units.
Palliative home care should be provided by a team of providers, The primary purpose of palliative care is to enhance the
including physicians, mental health workers, therapists, nurses, and quality and meaning of life and death for both patients and
paraprofessionals. loved ones. To date, health professionals have not used the
potential of palliative care to maximize the quality of life of
patients in their homes. In this chapter, we discuss home care
as an environment that provides unique opportunities to pro-
mote palliative care for patients and families throughout their
illnesses. The chapter gives background information on what
home care is, its historical roots, the types of providers avail-
able to give services, the regulatory policies controlling its use,
examples of models of palliative home care programs, and rec-
ommendations to professionals for facilitating the use of
home care in palliative care, concluding with a case study illus-
trating key elements of palliative care provision in the home.
o]
Historical Perspective on Home Care Nursing
The period spanning the middle of the 20th century, during

which patients were routinely cared for in acute care hospitals,
may turn out to have been but a brief period in medical his-
tory. Before that time, patients were cared for primarily at
home by their families. Today social and economic forces are
771
interacting to avoid hospitalization if possible and to return almost exclusively care for well mothers and children and the
patients home quickly if hospitalized. Although at face value sick poor to a program that focused on care of the sick elderly
these changes seem positive, they have highlighted gaps and in their homes. In 1967, there were 1753 home care agencies, a
deciencies in the current health care delivery system. large percentage of which were not-for-prot VNAs. In 2003,
Scientic advances have allowed us to keep patients with more than 35 years later, there were 7265 home care agencies,
diseases such as cancer alive increasingly longer despite com- with the largest percentage of agencies represented by the pro-
plex and chronic health problems. The burden of their care prietary sector.3 Not only did the types of agencies change, the
usually falls on families, who often are not adequately pre- acuity of patients increased and the development of technology
pared to handle the physically and emotionally demanding allowed for the delivery of highly complex care in the home set-
needs for care that are inherent in chronic and progressive ill- ting. The structural changes in the health care delivery system
nesses. In addition, family members often become primary associated with the passage of the Medicare legislation in 1965
care providers within the context of other demands, such as provided the foundation for the contemporary practice of
employment outside the home and competing family roles. home care nursing in the United States.
The necessity among most of the nations family members to The 1990s brought a new challenge, managed care, to health
assume employment outside the home and to alter those care in general and home care specically in the United States.
arrangements when faced with a sick relative has created an The most signicant impact of managed care on home care
immeasurable strain on physical, emotional, and nancial was a decline in the number of visits allowed per patient per
resources. The increasing responsibilities of the family in pro- episode of illness. The result was a decline in the amount of
viding care in the face of limited external support and the con- home care patients received, causing a stabilization of the rapid
sequences of that caregiving for patient and family raise growth in the home care delivery system. The American Bal-
important challenges for clinicians.1 anced Budget Act of 1997 (PL 10533) mandated the implemen-
The origins of home care are found in the practice of visit- tation of a prospective payment system for home care for
ing nursing, which had its beginnings in the United States in Medicare beneciaries. In this system, home care agencies
the late 1800s. The modern concept of providing nursing care receive a designated dollar amount per episode of illness to
in the home was established by William Rathbone of Liver- provide care for a Medicare patient based on the patients
pool, England, in 1859. Rathbone, a wealthy businessman and admitting diagnosis and other factors related to physical and
philanthropist, set up a system of visiting nursing after a per- functional status. Just as the Diagnostic Related Group (DRG)
sonal experience, when nurses cared for his wife at home system caused a signicant decline in the number of hospital
before her death. In 1859, with the help of Florence Nightin- beds in the 1980s, the prospective payment system for home
gale, he started a school to train visiting nurses at the Liver- care has resulted in signicant shrinkage of the home health
pool Inrmary, the graduates of which focused on helping the care industry due to patients receiving fewer visits per episode
sick poor in their homes.2 of illness.
As in England, caring for the ill in their homes in the
United States focused, from its inception, on the poor. Com-
pared to the upper and middle class who received frequent vis- o]
its from the family physician, either in their homes or in the Denition of Home Care Nursing
hospital pay wards, treatment of the sick poor seemed careless
at best. Visiting nurse associations (VNAs) in the United States Home care, home health care, and home care nursing can be
were established by groups of people who wanted to assist the confusing terms to both providers and consumers, because
poor to improve their health. During 1885 and 1886, visiting they are often used interchangeably. Numerous denitions of
nurse services developed in Buffalo, New York, Boston, and home care have been provided by the many professional and
Philadelphia that focused on caring for the middle-class sick trade associations that address home care issues (National
as well as the sick poor.2 Association for Home Care, Consumers Union, American Hos-
During World War II, as physicians made fewer home visits pital Association, American Medical Association, Health Care
and focused instead on patients who came to their ofces and Financing Administration, etc.). Common to all the deni-
were admitted to hospitals, the home care movement grew, tions is the recognition that home care is care of the sick in the
with nurses providing most of the health and illness care in the home by professionals and paraprofessionals, with the goal to
home. Up until the mid-1960s, not-for-prot VNAs were improve health, enhance comfort, and improve the quality of
developed in major cities, small towns, and counties through- life of clients. Home care nursing is dened here as:
out the United States. Under their auspices, nurses focused on
providing health services to women and infants and illness . . . the provision of nursing care to acute and chroni-
care to the poor in their homes, while most acute care was pro- cally ill patients of all ages in their home while integrat-
vided to patients in hospitals. ing community health nursing principles that focus on
The face of home care in the United States changed dramat- the environmental, psychosocial, economic, cultural,
ically with the passage of an amendment to the Social Security and personal health factors affecting an individuals
Act that enacted Medicare in 1965. Home care changed from and familys health status.4
Home Care 773
o] than 65 years of age. Eighty percent of informal caregivers

Home Care Use in the United States provide assistance 4 hours per day, 7 days per week.7 The
type of care provided by informal caregivers ranges from rou-
Home care is a diverse industry that provides a broad scope of tine custodial care, such as bathing, to sophisticated skilled
care to patients of all ages. In 2000, it was estimated that care, including tracheostomy care and intravenous medica-
slightly less than 8 million people received home care services tion administration. Informal caregivers assume a considerable
for acute illness, long-term health conditions, permanent dis- physiological, psychological, and economic burden in the
ability, and terminal illness.5 Although home care is provided care of their signicant other in the home. When layered on top
to a large number of people, it still represents a very small per- of existing responsibilities, caregiver tasks compete for time,
centage of national health care expenditures. Home care rep- energy, and attention. As a result, caregivers frequently describe
resented only 3% of the total national health expenditure in themselves as emotionally and physically drained.8 In a quali-
2000, while hospital care consumed 40% and physician ser- tative study of 15 family caregivers, Strang and Koop9 found
vices 22%,5 demonstrating the cost-efcient nature of home that several factors facilitated or interfered with caregiver cop-
care practice. ing. One factor that interfered with caregiver coping is the
The majority of patients (67.5%) who received home care competence of the formal caregiver. When formal caregivers
were discharged primarily to urban home care agencies.6 As were less than competent, they added to rather than reduced
the reimbursement for home care visits decreases and the cost the caregiving burden. The economic cost of providing infor-
of home visiting in rural areas increases because of increased mal care in the home also places a signicant burden on care-
travel time, many rural home care agencies have been forced to givers. With the shift toward community-based care, a number
close, limiting access to home care for the population in the of costs have shifted to the patient and caregiver. Out-of-
region. The federal government has been inconsistent in its pocket nancial expenditures include medications, trans-
payment of the rural add-on to home care agencies who pro- portation, home medical equipment, supplies, and respite
vide care in rural settings. services.10 These costs are nonreimbursable and often invisible
The demographic picture of home health care recipients but are very real to families who are trying to provide care on
shows a predominately female (64.8%) and white (75.8%) a xed income.
population. The majority (70.5%) of home care patients are Formal caregivers are those professionals and paraprofes-
65 years of age and over, although home care is provided to sionals who are compensated for the in-home care they pro-
patients of all ages, from birth to death. The most common vide. In 1998, an estimated 662,000 persons were employed in
primary diagnosis for home care patients is diseases of the home health agencies. In home care, nurses represent 36% of
circulatory system, most often heart disease. Other common the formal caregivers providing care to patients in Medicare-
primary diagnoses of patients receiving home care are dis- certied home care agencies. Home health aides also represent
eases of the musculoskeletal system and connective tissue, a large proportion of the formal caregivers in home care and
diabetes mellitus, diseases of the respiratory system, injury, are expected to increase in number in the upcoming years.11
and poisoning. A primary diagnosis of malignant neoplasm The professionals and paraprofessionals who represent the
represents only 5% of home health care patients, while it range of home care providers in home health agencies are
accounts for 52% of all patients in hospice.6 Clearly, nonhos- described in Table 411.
pice home care has not been used adequately as an integral
part of care for cancer patients and families as they endure the
physical and emotional demands of complex cancer treat- o]
ments and move across the acute, chronic, and terminal Reimbursement Mechanisms
phases of their disease. This is an ideal context in which the
need for palliative care should drive an increased use of home Home health services are reimbursed by both commercial and
care services. government third-party payers as well as by private individu-
als. Government third-party payers include Medicare, Medic-
aid, CHAMPUS, and the Veterans Administration system.
o] These government programs have specic requirements that
Types of Home Care Providers must be met for the coverage of services. Commercial third-
party payers include insurance companies, health mainte-
Home care providers are traditionally characterized as either nance organizations (HMOs), preferred provider organizations
formal or informal caregivers. Informal caregivers are those (PPOs), and case management programs. Commercial in-
family members and friends who provide care in the home surers often allow for more exibility in their requirements
and are unpaid. It is estimated that almost three-quarters of than Medicare. For example, the home care nurse may negoti-
the elderly with multiple comorbidities and severe disabilities ate with an insurance company to obtain needed services for
who receive home care rely on family members or other the patient on the basis of the cost-effectiveness of the home
sources of unpaid assistance. More than 75% of those provid- care plan, even though that service may not be routinely
ing informal home care are female, and nearly 33% are more covered.
Table 411
Types of Providers in Home Care
Type of Provider Role and Responsibilities
Nurses
Registered nurses (RNs) Deliver skilled care to patients in the home.
Considered to be the coordinator of care.
Licensed practical nurses (LPNs) Deliver routine care to patients under the direction
of a registered nurse.
Advanced practice nurses (APNs) Coordinate total patient care to complex patients,
supervise other nurses in difcult cases related to
their speciality, develop special programs, and
negotiate for reimbursement of services.
Teach patients and caregivers special skills
and knowledge
Therapists
Physical therapists Deliver skilled care that includes assessment for
assistive devices in the home. Perform therapy
procedures with the patient, and teach the patient
and family to assist in treatment. Assist patient
to improve mobility.
Occupational therapists Focus on improving physical, mental, and
social functioning.
Rehabilitation of the upper body and
improvement of ne motor ability
Speech therapists Rehabilitation of patients with speech and
swallowing problems
Respiratory therapists Provide support to patients using respira-
toryhome medical equipment such as
ventilators. Perform professional
respiratory therapy treatments.
Other Clinical Staff

Social workers Help patients and families identify needs and refer
to community agencies. Assist with applications
for community-based services and provide
nancial assitance information.
Dietitians Provide diet counseling to patients with special
nutritional needs. Direct service of a dietitian
is not a reimbursable service in home care.
Paraprofessionals
Home health aides Perform personal care, basic nursing tasks (as
opposed to skilled), and incidental homemaking.
Homemakers Perform housekeeping and chores to ensure a safe
and healthy home care environment.
Medicare state to state. The Centers of Medicare and Medicaid Services

(CMS) (formerly called Health Care Financing Administration
Medicare is a federal insurance program for the elderly (65 and [HCFA]), a department in the federal government, regulates
over), the permanently disabled, and persons with end-stage payments for services under Medicare. The rules developed by
renal disease in the United States, and is the single largest payer CMS that guide the Medicare program are detailed in the Health
for home health services. To be eligible for this program, an indi- Insurance Manual-11 (HIM11). CMS contracts with insurance
vidual or spouse must have paid into Social Security. Medicare is companies called scal intermediaries (FIs) to process Medicare
a federal program and, as such, the benets are the same from claims that are submitted from home care agencies.
Home Care 775
Since agencies are now reimbursed using a prospective pay- place for care, it seems appropriate that hospice care is given in
ment methodology, home care has gained increased exibility a variety of settings.
for the services provided under Medicare. In the former fee-for- In order for a patient to elect the Hospice Medicare benet,
service model, designated and specic home care providers were the patient must waive the traditional Medicare benet. By
paid for each visit made. Today, home care agencies are respon- electing the Hospice Medicare benet, the patient is acknowl-
sible for assuring that the patients achieve their health outcomes edging the terminal nature of the illness and opting no longer
in the most efcient manner. If a home care agency believes to have curative treatment.
the most effective plan of care would be to integrate alternative
and complementary therapies, or mental heath therapy into a Medicaid
patients plan of care, it will not reduce or increase the amount
of payment received from the government. Medicaid is an assistance program for the poor, some disabled
There are ve criteria, summarized in Table 412, that a persons, and children. Unlike Medicare, Medicaid is jointly
patient must meet for home care services to be reimbursed by sponsored by the federal government and the individual states.
Medicare. Therefore, Medicaid coverage varies from state to state. These
Medicare is the main payer of hospice services in the United differences can often be dramatic and in some cases dependent
States under the Medicare Hospice Benet, which Congress on the states nancial solvency. Eligibility for Medicaid is based
rst enacted as part of Medicare Part A in 1982 under the Tax on income and assets and is not contingent on any previous
Equity and Fiscal Responsibility Act (TEFRA; P.L. 97248). The payments to the federal or state governments.
law was in effect from 1983 to 1986, when Congress made hos- Unlike the requirements of the Medicare program, Medic-
pice a permanent part of the Medicare program.12 The impetus aid covers both skilled and unskilled care in the home and
behind Medicares hospice benet came from the recognition usually does not require that the recipient be homebound. To
that the regulations and restrictions for traditional Medicare qualify for the home care benets under Medicaid, patients
were not well suited to meet the needs of terminally ill patients. must meet income eligibility requirements, have a plan of care
Medicare hospice was designed primarily as a home care signed by a physician, and the plan of care must be reviewed
benet that included an array of services to assist care providers by a physician every 60 days.
in the clinical management of the terminally ill in the home.4
However, the regulations for hospice care also require home Commercial Insurance
care providers to have in-patient hospice beds available for ter-
minally ill patients who are unable to remain in their homes. Many commercial insurance companies are involved in health
Recognizing that hospice is a philosophy of care rather than a insurance for individuals or groups. These local or national
Table 412
Criteria for Home Care Reimbursement Under Medicare
Criterion Description
Homebound A patient is considered homebound if absences from the home

are rare and of short duration and attributable to the need to
receive medical treatments.
Completed plan of care A plan of care for home care services must be completed on
Health Care Financing Administrating (HCFA) forms 485, 486,
and 487. The plan of care must be signed by a physician.
Skilled service Medicare denes a skilled service as one provided by a registered
nurse, physical therapist, or speech therapist. Skilled nursing
services include skilled observation and assessment, teaching,
direct care and management, and evaluation of the plan of care.
Intermittent and part-time Part-time means that skilled care and home health aide services
combined may not exceed 8 hours per day or 28 hours per
week. Intermittent means that skilled care is provided or needed
on fewer than 7 days per week or less than 8 hours of each day
for periods of 21 days or less, with extensions for
exceptional circumstances.
Reasonable and necessary The services provided must be reasonable for the patient given
the diagnosis and necessary to assist the patient to achieve the
expected outcomes.
companies often write policies that include a home care benet. have a long history of developing strong and intimate bonds
Commercial insurers often cover the same services covered by with patients and families. As patients progress toward the ter-
Medicare in addition to preventive, private duty, and supportive minal phase of their illnesses, it is emotionally difcult for
services, such as a home health aide or homemaker. Commer- home care nurses to refer their patients to hospice providers.
cial insurance companies cover patients of all ages, including At times, it is equally as difcult for a family to accept the
Medicare patients with supplemental insurance policies that referral, knowing that they will have to give up their nurse.
cover health care expenditures not reimbursed by Medicare. The home care nurse and the family may believe that the rela-
Supplemental insurance policies are a source of confusion tionship that has developed among the patient, the family,
and anxiety among home care patients, often when families and the home care nurse is more important than any addi-
are under increased stress due to the complexity of the health tional benets the hospice might bring.
situation for one of its members. Nurses should encourage The greater exibility in traditional Medicare regulations
families to carefully review the specics of the supplemental that came with the resolution of the Duggan vs. Bohan case13
insurance policy, including copays, annual review of benets, in 1988 has allowed nonhospice home care agencies to provide
anticipated out-of-pocket costs, and pharmacy costs. Families extended nursing and home health aide services for patients
should recognize that when changing a supplemental insur- in the terminal phase of illness. In this legal case, a group of
ance carrier, you may also have to change the home care home care agencies challenged the HCFA (now CMS) regard-
provider, since some supplemental policies state which home ing their strict interpretation of the Medicare regulation on
care provider will be reimbursed for services. patient qualications for part-time intermittent care. The suit
Commercial insurance often includes a maximum lifetime was won by the home care agencies, requiring HCFA to be
benet as part of the policy. The high cost of high-technology more generous in interpreting Medicare regulations. Although
care forces a growing number of patients to reach this maxi- families may feel that they are getting sufcient home care,
mum rather quickly and face the loss of coverage. This has they are not able to take advantage of the prescription drug
resulted in the development of case-management programs components of the hospice benet, which may result in signif-
administered by insurance companies. The case manager proj- icant nancial burden. They also usually do not receive the
ects the long-term needs and costs of care for the patient and supportive services, such as pastoral care and bereavement
develops a plan with the patient to meet those needs in a cost- follow-up, that are integral to the hospice program. Because
efcient manner. Consideration is given to the life expectancy the emotional impact of the patients death is unknown at the
of the patient in relationship to the maximum lifetime benet. time the patient makes the decision to forego a hospice refer-
Unlike the Medicare program, in which negotiation for ser- ral, it is impossible to predict the signicance of a service
vices is not an option, it may be important for home care nurses such as bereavement follow-up. Because both the nonhospice
to identify the needed services for a patient with a commercial home health agency and the hospice provider offer important
insurance plan and intervene to obtain funding for those ser- services, especially nursing care to patients at the end of life,
vices. When working with an insurance case manager, the home strengthening mechanisms that facilitate transitions between
care nurse must be specic about the services the patient will these two types of services is essential. See Chapter 2 for a
need, the overall cost of those services, and the expected out- comprehensive discussion of the hospice admission criteria,
come related to the services requested. The more precisely the including the certication by the physician of a terminal diag-
home care nurse can portray the impact of the care plan on the nosis and the 6th-month rule.
patient outcomes with objective data, the more inclined the case
manager will be to authorize services. Insurance companies are
very concerned with the satisfaction of their enrollees. Patients o]
and families should be empowered to make their voices heard Cancer as a Prototype for Home Care
about the services they need to remain safe in the home. If out- Use in Palliative Care
of-network services or special pricing is negotiated with the
insurance case manager, written documentation of the agree- Over the years, cancer has shifted from a terminal illness to
ment should be included in the patients record. Ideally, the a chronic disease. Even patients with advanced disease and
patient should be given a copy of this agreement in the event guarded prognoses initially may be treated as if their disease is
that any disputes over payment occur. curable rather than progressive and terminal. Because the philo-
sophical underpinnings and goals of curative and palliative
The Home HealthHospice Connection treatments are quite different, approaching an individual
who has advanced disease with a curative stance may have
In order for a patient to receive the full array of hospice ser- long-term negative effects on physical, social, and emotional
vices under Medicare, the care must be provided by a certied functions that ultimately affect the patients quality of life.
hospice provider. To be reimbursed, home care agencies that Characteristics of advanced cancer that require coordinated
are not certied hospice providers must refer their terminally palliative care include multiple physical needs, intense emo-
ill patients to an agency that carries the certication. This reg- tional distress manifested by anxiety and depression, and com-
ulation affects clinical care in several ways. Home care nurses plex patient and caregiver needs. The goals of palliative care
Home Care 777
are best achieved if care is initiated early on, and one of the followed 233 cancer patients for 6 months after they were hos-
most efcient ways of monitoring patients needs is to coordi- pitalized. Half of the patients were newly diagnosed (n = 115);
nate the overall plan of management with home care nursing the other half had had their cancers for more than a year.
to decrease fragmentation and promote continuity. Patients were discharged with a range of complex problems,
including unrelieved symptoms (pain, fatigue, dyspnea, poor
Needs of Cancer Patients appetite), wound care, feeding devices, elimination devices,
intravenous medication administration, and other highly
Because of the growing trend to discharge hospitalized patients technical procedures, such as tracheostomies. The majority of
early, the increasing use of ambulatory care services, and the these patients were followed as out-patients and not referred
increasing use of complex therapies, the need for ongoing to formal home care services for monitoring, despite their
monitoring and instruction of patients and families has never ongoing needs, primarily because they were under 65 years of
been greater. Family members, often without the assistance of age. Evers and colleagues25 assessed whether the needs of
any formal home care services, are assuming primary respon- younger patients differed from the palliative care needs and
sibility for the care of patients at home.1417 This demand on experiences of older adults. They found signicant differences
families is not new, although the caregiver role has changed across age groups on clinical characteristics, advance care
dramatically from promoting convalescence to providing planning, and service use. Patients over age 80 had a reduced
high-technology care and psychological support in the home. prevalence of cancer, a higher prevalence of dementia and
Members of a patients family are of vital importance in meet- incapacity, more frequent decisions to withhold life-
ing the patients physical and psychosocial needs and accom- sustaining treatments, and fewer interventions for symptom
plishing treatment goals.18,19 The burden of caring for patients management.
with a diagnosis of cancer, however, may adversely affect fam-
ilies who lack adequate resources or who are insufciently pre- Needs of Caregivers
pared for this new, complex role. There is mounting evidence
that changes in family roles and the burden placed on family A number of studies have identied the needs of patients and
caregivers may have negative effects on the quality of life of family members who provide care to patients with cancer. A
both cancer patients and their caregivers,17 particularly during study by Grobe and colleagues26 described what information
advanced stages of cancer. was provided to 87 patients in the advanced stages of cancer
Research to identify patient-dened home care needs began and their caregivers. This study revealed that families per-
in the 1980s and has increased steadily since the 1990s. Evi- ceived that little, if any, education was provided to them. Hinds27
dence suggests that both patients and their families benet conducted a study examining the perceived needs of 83 family
from home care services directed at physical and psychological caregivers who reported they felt inadequately prepared to
concerns. An early study20 identied pain, sleep, and elimina- provide care for their sick relatives in the home and identied
tion management as major patient needs. Wellisch and his col- numerous information and skill decits. Morris and Thomas28
leagues21 investigated the types and frequency of problems identied that caregivers are often tacked on to patients and
experienced by two separate groups of seriously ill cancer seen as co-clients, but unfortunately are not fully recognized
patients and their families in their homes in the Los Angeles and, consequently, do not receive appropriate information or
area and explored the types of interventions that helped to are not taught the skills to provide care to loved ones. Siegel
reduce the problems. The ve most frequent problem cate- and colleagues29,30 divided caregiving tasks into categories of
gories identied included somatic side effects, including pain; personal care, instrumental tasks, and transportation. Each of
patient mood disturbance; equipment/technology problems; these areas was associated with greater caregiver demands as
family relationship impairment; and patient cognitive impair- patients physiological factors worsened or if their caregivers
ment. Interventions reported to be effective included rein- associated their care with a high level of burden.
forcement to the patient and family, no intervention, and Oberst and colleagues31 assessed the demands on cancer
counseling and emotional support. They noted that patients caregivers, including their perceptions of providing care in the
with cognitive decits had special needs, and their family home environment. Caregivers reported that the majority of
members were at high risk for ongoing problems. their time was spent providing transportation, giving emo-
In Pennsylvania, Houts and colleagues22 found that the tional support, and maintaining the household. More than
unmet needs of patients with cancer included assistance with one third of the caregivers reported a lack of assistance from
emotional problems, transportation, nances, and interactions health professionals in providing care. In addition, demands
with medical staff. Wingate and Lackey23 identied the needs on the caregivers escalated as the treatment regimen pro-
of patients and primary caregivers in the home and compared gressed. Another study lends support to the sense of isolation
the priorities between the two. Both identied their psychologi- and the stressful nature of caregiving in that 85% of a sample
cal distress as their highest priority. For patients, physical and of cancer caregivers failed to use available resources to assist
informational needs were next. For caregivers, household man- them in caregiving activities. In addition, 77% of the caregivers
agement needs, which included direct patient care, were second, reported increased stress, and 28% required medication to
followed by informational needs. McCorkle and colleagues24 help them cope with the burden associated with caregiving.32
These accounts present persuasive documentation that caring Patient Programs

for a person with cancer is a stressful experience and can have
major emotional and physical consequences for caregivers. Hinton40 questioned whether home care can maintain an
In their review of caregiver research, Sales and colleagues33 acceptable quality of life for patients with terminal cancer and
concluded that a signicant number of cancer caregivers exhibit their relatives. He dened quality-of-life outcomes to include
psychological distress and physical symptoms. Predictors of mood, attitude to condition, perceived help, and preferred
caregiver distress included a number of patient-related vari- place of care. The study included 77 randomly selected
ables, including more advanced stages of cancer, disability, and patients followed by the hospice palliative home care service at
complex care needs. Given and colleagues34,35 reported that St. Christophers Hospice in England. Overall, the results were
patients distress associated with their symptoms, poor mobil- extremely positive. Patients physical symptoms were tolera-
ity, and increased dependency with instrumental activities ble, caregivers depression and anxiety were limited, and the
were linked to signicant burdens for family caregivers. They majority of care provided in the home (90%) was comple-
designed a study to test the impact of a 16-week nursing inter- mented by hospitalizations for 1 to 3 days (30%) or longer
vention on depressive symptoms of caregivers of patients (41%). Treatment was usually praised by relatives, and at follow-
newly diagnosed with cancer. One hundred twenty-ve patient up, relatives approved where patients had received care and
caregiver dyads were recruited and 89 completed the study. had died. In countries other than the United States, home care
The nursing intervention delivered to the experimental group is an integral part of well-planned palliative care, and a num-
consisted of symptom management and monitoring, educa- ber of palliative home care programs have demonstrated pos-
tion, emotional support, coordination of services, and care- itive patient and caregiver outcomes.
giver preparation to care. Nurses made ve home visits and The most recognized model of palliative home care was
four telephone calls over time. The intervention was effective in developed at St. Christophers Hospice, yet programs in other
slowing the rate of depressive symptoms rather than decreasing countries have been equally committed, including programs
the levels of depression in these caregivers. They concluded in the United Kingdom,41 Canada,42 Sweden,4345 and Italy.46,47
that the caregivers with higher levels of depression were the These programs included hospice-like services, but, more
ones who withdrew from the study, limiting their effects of the importantly, they were targeted at symptom management and
intervention.36 not limited to imminent dying and death. They also encom-
Similarly, Carter37 described sleep and depressive symp- passed the care of the patient and the family and facilitated
toms in 47 caregivers of patients with advanced cancer and transitions from hospitals to homes. In the authors opinion,
found severe uctuations in sleep patterns. Caregivers reported the main reasons these programs have been successful have
they suffered progressive sleep deprivation that affected their been not only the commitment and passion of nurses, but also
emotions and ability to continue as caregivers. In another study, the involvement of physicians who recognize their interdisci-
caregivers reported that they perceived discomfort in their plinary role in the palliative care component of patients dis-
loved ones who were unresponsive as death was imminent and eases, and the government reimbursement systems.
consequently were at increased risk for psychological prob- In the United States, some attempts have been made by other
lems after the patients deaths.38 than traditional home health agencies to integrate palliative
In general, the literature on the needs of cancer patients care into home nursing care. Martinsons48,49 seminal study of
and caregivers of cancer patients highlights: (1) that patients facilitating the management and death of children in rural Min-
are increasingly being treated in ambulatory clinics and have nesota after discharge from an urban medical center demon-
ongoing, unmet complex care needs with little or no use of strated that families wanted and assumed the responsibility to
home or palliative care referrals; (2) that caregivers are assum- provide necessary care with supervision of the specialty nurses
ing more and more responsibility for monitoring patients sta- from the medical center. Much of the teaching and instruction
tus and providing direct care in the home with no opportunities was provided to families over the telephone.
for respite; (3) that caregivers have a high proportion of unmet Yates and his colleagues50 designed a study to compare two
needs themselves; (4) that the caregiving experience encom- groups of patients with advanced cancer who were treated in
passes both positive and negative elements; and, (5) that the rural Vermont. The patients were paired based on population
conceptualization of caregiver burden is linked to negative density, distance from the medical center, socioeconomic sta-
reactions to caregiving. tus, local medical facilities, referral patterns, and local social
service resources. The groups were divided into intensive and
nonintensive groups. The intensive group received regular
o] home visits by nurse practitioners, and the nonintensive group
Models of Palliative Home Care Programs was not visited by nurses. Both groups received the same mul-
tidisciplinary care from the Vermont Regional Cancer Center
A number of studies have tested interventions to develop and monitoring of cancer status through the ambulatory can-
models for palliative home care.39 Both patients and their care- cer clinic. A total of 199 patients (98 in the intensive group and
givers have served as subjects of these studies. Some examples 101 in the nonintensive group) were followed, and at the end of
are highlighted. the 4-year study 139 patients had died. The results were very
Home Care 779
positive in demonstrating that patients in the intensive group care and were available 24 hours a day to answer questions,
fared better overall than those in the nonintensive group. They problem solve, and respond to crisis. Spouses psychological dis-
demonstrated less need for medical care at the cancer center tress was signicantly lower 6 months after the patients deaths
and greater independence over the course of the study than and sustained over time in the group cared for by the oncology
those in the nonintensive group. Most striking, the home home care nurses.54 Findings suggested that the bereaveds psy-
nursing interventions improved individual patient pain man- chological distress was positively inuenced and their recovery
agement. The authors found that physicians often prescribed was hastened by the nursing interventions provided during the
pain medications without follow-up monitoring of patient terminal phase of illness.54
status, whereas the home nurses were vigilant in monitoring In a second study, McCorkle and her colleagues followed
patients comfort. The nurses also improved patient and fam- 233 patients who were discharged from seven hospitals with
ily negotiations for available community resources. Although complex care problems requiring home care services. The
the study failed to show a survival difference between the two patients were diagnosed with eight different solid tumors and
groups, the researchers did demonstrate cost-effective out- followed for 6 months. Although all these patients could have
comes. The study demonstrated a decrease in the overall cost beneted from home care, only about half were referred to
of care by facilitating a greater number of home deaths in the home care. Patients receiving home care demonstrated improve-
intensive group. They concluded that cost savings occurred ment in their symptoms, function, and mental health status
without sacrice of patient well-being and with concomitant compared with patients who did not receive home care. Results
advantages in patient pain management. aided in identifying interventions to help with specic prob-
In a statewide study of home care use patterns among can- lems related to cancer and treatment effects and were stan-
cer patients in Illinois, physicians were found, in general, to be dardized to be tested in a third study.24
the primary source of patient referral to home health services. In the third study, McCorkle and colleagues56 tested the effect
More than two thirds of the sample were referred to home ser- of a standardized nursing intervention protocol (SNIP) on post-
vices for the purpose of monitoring health status, more often surgical cancer patients outcomes. This study compared the
for postsurgical than postmedical treatment effects.51 Oncol- length of survival of postsurgical cancer patients who received
ogy clinical nurse specialists served as consultants to staff specialized home care intervention by APNs after their surgery
nurses in home health agencies in rural Illinois. Both staff and to the length of survival of those who received the usual follow-
patients reported satisfaction with this model of care delivery. up care in ambulatory settings. One hundred ninety patients
The clinical specialists spent a majority of their time teaching (50.7%) were in the intervention group and 185 (49.3%) in the
the nurses specic skills and were readily available by tele- usual care group. Patients in the control group received stan-
phone to both staff and patients. dard postoperative care in the hospital and routine follow-up in
McCorkle and her colleagues have completed several studies outpatient surgical clinics upon discharge. The home care inter-
to test the role of the advanced practice nurse (APN) on patient vention was designed to enhance recovery from surgery and to
outcomes in home nursing care.52,53 The rst randomized con- improve quality-of-life outcomes. The intervention was devel-
trolled trial was completed in 1986 to assess the effects of home oped as a protocol that consisted of standard assessment and
nursing care on either an oncology home care group (OHC) management guidelines, doses of content, and schedules of con-
that received care from oncology home care nurses, a standard tacts. APNs followed specic guidelines to assess and monitor
home care group (SHC) that received care from home care the physical, emotional, and functional status of patients; pro-
nurses without oncology training, or an ofce care group (OC) vided direct care when needed; assisted in obtaining services or
that received whatever care they needed except home care. One other resources from the community; and provided teaching,
hundred sixty-six patients with lung cancer were entered into counseling, and support during the recovery period. Nurses also
the study 2 months after diagnosis and followed for an addi- functioned as liaisons to health care settings and providers, as
tional 6 months. Participants experienced signicant differences well as to patients and families in the provision of technical and
in symptom distress and functional abilities. The two home psychological support.
nursing care groups remained less distressed and more inde- At the completion of the study, 93 (24.8%) patients had
pendent 6 weeks longer than the ofce care group. The home died. Of these, 41 (44%) were from the intervention group and
nursing care assisted patients in minimizing distress from 52 (56%) from the usual care group. For all patients who died,
symptoms and maintaining their independence longer, in com- causes of death were documented. Cancer was listed either as
parison to patients who received no home nursing care. As part the primary or secondary cause on all death certicates. Other
of the study, the effects of the three groups (OHC, SHC, and causes listed were pulmonary embolus, heart failure, sepsis,
OC) were tested on the spouses psychological distress during and cardiac arrest. Patients receiving the home care interven-
the bereavement period.54 Of the 100 spouses who participated tion had a longer length of survival than the control group.
in the study, 46 patients died. Spouses of the deceased patients During the rst 3 months after discharge, a total of eight patients
were followed for 25 months after the death. Spouses of patients in the control group died, and one patient from the interven-
in the OHC group were taught to provide direct care to their tion group died. The intervention, occurring over a period of
loved ones and to sit to be present through the livingdying 4 weeks immediately after surgery and hospitalization, corre-
transition.55 The OHC nurses served as central coordinators for sponded to a period when the difference in mortality rate
between the intervention and control groups was the largest. isfaction with care, and overall cost of postindex hospitaliza-
The combination of physical care and psychosocial support tion health services. Patients in the intervention group were less
during the acute postoperative period addressed two critical likely to be readmitted to the hospital, experienced fewer days
issues. The rst was to assist patients and families during the in the hospital, and had a longer time to the rst hospital read-
period of transition from hospital to home and to offer educa- mission for any reason. Patients in both groups had improved
tion, guidance, and reassurance during high psychological dis- functional status and depression scores and were satised with
tress and uncertainty. The second was to monitor patients their care. Overall costs for postindex hospitalization health
physical status and offset potential lethal complications that services for the intervention group were half that of the control
were most prevalent in the acute postoperative period. This group. The results of this study indicated that a comprehensive
study supports the importance of such nursing interventions intervention including home care by an APN has a signicant
during the critical diagnostic and surgical treatment phases positive effect on patient outcomes and the cost of care for
and is clearly dened within the realm of palliative care, since high-risk elderly patients.
many of these patients were diagnosed as late-stage.56
As part of the third study, Jepson and colleagues57 exam- Caregiver Programs
ined changes in the psychosocial status of caregivers of post-
surgical cancer patients after the patients discharge. Within a There have been a number of programs developed to teach
week after being discharged from the hospital, patients were caregivers direct care responsibilities for patients in the home
randomly assigned to either the treatment or control condi- that have had positive outcomes on patients and caregivers.
tion. Patients in the treatment group received a standardized Ferrell and colleagues60 examined the impact of cancer pain
home care intervention over 4 weeks. The intervention was education on family caregivers of elderly cancer patients. Fifty
provided by APNs and consisted of three home visits and six family caregivers of elderly patients who were at home and
telephone calls. The nursing interventions included problem experiencing cancer-related pain were recruited for partici-
assessment; monitoring of the patients condition; symptom pation in this quasi-experimental study. Outcomes included
management; and teaching caregivers how to problem solve, quality of life, knowledge about pain, and caregiver burden.
administer medications, and provide self-care behaviors. Psy- Caregivers reported signicant burden associated with pain
chosocial status was measured using the Caregiver Reaction management, particularly psychological distress. The pain-
Assessment.35 Overall, caregivers psychosocial status improved education program proved efcacious in improving caregiver
from discharge to 3 months and stabilized thereafter; however, knowledge and quality of life. Interventions that teach care-
among caregivers with physical problems, the psychosocial givers to become procient in the physical aspects of patient
status of both patients and caregivers in the treatment group care indirectly improve the caregivers well-being.
declined over time compared to those in the control group. A second study that included testing a psychoeducational
The researchers concluded that caregivers of cancer patients curriculum intervention was developed by Barg and col-
who have their own physical problems are at risk for psycho- leagues.61 The structured education intervention consisted
logical morbidity as they assume the caregiving role. They rec- of 6 to 8 hours of intense educational, skills training, and
ommended that the health of the caregiver be considered as an communication-enhancing strategies, to assist caregivers in
essential criteria for the caregiver to assume primary responsi- being more prepared to care for patients at home. Caregivers
bility for the patients care at home. In the event the caregiver reported they were more informed about cancer, its treatment,
has a compromised health status, then formal home care ser- and symptom control. Part of the content, which focused on
vices are needed.57 Bradley58 also recommended that assess- expected psychological reactions to cancer and to caregiving,
ments must include caregiver health needs and that for home helped normalize distressing emotions that were being experi-
health care to be effective, nurses must conduct caregiver enced by patients and caregivers. These experiences provided a
assessments to identify needs that could impair their caregiv- great source of relief for the caregivers. Despite a clear pro-
ing abilities. gram description and the delineation of measurable out-
Naylor and colleagues59 studied the effects of comprehen- comes, the researchers reported that a lack of willingness by
sive discharge planning and home visitation by APNs with a many cancer caregivers to attend group meetings posed a
population of elderly patients hospitalized for specic medical major obstacle to obtaining a large number of participants.
and surgical problems, including heart disease, orthopedic pro- Group-style interventions clearly lend themselves to the study
cedures, and bowel surgery. Some of these patients had cancer of a self-selected sample. The researchers concluded that
diagnoses. The intervention group received standardized com- caregivers who attended groups most likely were those least in
prehensive discharge planning specic for elderly persons at need of intervention, since they demonstrated an ability to use
high risk of poor postdischarge outcomes, APN home visits, social support and had respite care available, making group
and telephone calls. The intervention benetted from the clin- attendance possible. Alternatively, individualized strategies are
ical experience of APNs and their abilities in communicating, needed to assist caregivers who are unable to participate in
coordinating, and collaborating with physicians. Outcomes groups and feel they cannot leave their loved ones.
included hospitalization rates, days in the hospital, time to rst In another study, Schumacher and colleagues62 described
readmission, functional status, level of depression, patient sat- the difculties that patients and family caregivers encountered
Home Care 781
while participating in a randomized clinical trial related to a who has graduated from a masters program in a
nursing pain-control intervention. The intervention group specialty eld such as an oncology advanced prac-
reported they had difculties in obtaining the prescribed med- tice program, including clinical nurse specialists and
ications, accessing information, tailoring prescribed regimens nurse practitioners. To assist the staff nurse in deal-
to meet individual needs, managing side effects, cognitively ing with the complexity of palliative care, either a
processing information, managing new or unusual pain, and palliative care physician or an APN should serve as a
managing multiple symptoms simultaneously. The researchers supervisor/consultant to the team and be directly
concluded that the provision of information about pain man- involved in clinical decisions. There may be fewer
agement is not adequate to improve pain control in the home, opportunities for APNs than needed working
but requires ongoing assistance with problems as they are en- directly in home care agencies because of the per-
countered. ception that they are too costly to employ. As agen-
Koop and Strang63 explored the experience of bereave- cies move to prospective payment and greater
ment following home-based family caregiving of persons with efciency, the role of the APN will factor more
advanced cancer. The caregivers reported both positive and prominently in home care agencies. APNs may also
negative outcomes that they attributed to having provided work independently and provide care to a group of
care to their loved one. The positive feelings included feelings patients, such as case managers from an ambulatory
of accomplishment and improved family relationships, while clinic. As a result of the Balanced Budget Act of 1997
the negative feelings included feelings of failure and haunting (PL 10555), APNs, specically clinical nurse special-
images of the deceased. Overall positive outcomes outweighed ists and nurse practitioners, practicing in any setting
the negative ones and the bereaved family members reported can be directly reimbursed at 85% of the physician
satisfaction with providing care for their loved ones. fee schedule for services provided to Medicare bene-
ciaries. In home care, this change has the potential
to facilitate access to care for patients who do not
o] have access to a home care agency or other primary
Recommendations for Facilitating the Use care provider, specically those in rural and under-
of Home Care Nursing in Palliative Care served areas.
2. Because of the barriers to entering hospice care, home
Home care nursing is a logical component of effective pallia- care nurses should become knowledgeable and highly
tive care but, for a number of reasons, it has been underused. skilled in providing palliative care to patients. This
Patients who need palliative care have complex and often chal- will require not only the development of skills in a
lenging physical and psychological problems. Palliative care new area of clinical expertise but also a paradigm
for specic types of diseases requires knowledgeable and com- shift in the way home care nurses view the episode
petent clinicians. It is common for many of the professional of care for home care patients. Home care has tradi-
staff nurses in home care agencies to lack the knowledge and tionally been viewed as a component of the long-
expertise to manage patients symptoms and to teach care- term care delivery system. Although the number of
givers the skills they need to manage the day-to-day problems home visits per episode of illness has decreased sig-
they encounter in caregiving. Yet, because of the barriers nicantly, home visits tend to be spread out over a
described to receiving hospice care, home care nurses have to greater period of time, usually a 60-day certication
provide much of the palliative care in the community. In addi- period. For patients requiring palliation, home care
tion, for palliative care to be successful in the home, physicians may need to be very intensive over a relatively short
must work collaboratively with nurses and be available to period of time (2 to 4 weeks). In this model, the
solve problems as they arise. It is often easier for physicians to home care nurse can assist the patient and family in
admit patients to the hospital than to work with home care methods of managing symptoms and coping with
nurses to keep patients at home. the caregiving role. In the long term, as the patients
The state of the science in home care was reviewed for this disease progresses, the patient and caregivers will
chapter. Results from these studies have not been systemati- need booster visits, but the majority of visits and
cally incorporated into clinical practice where services are reim- care may be given in short periods of time, when the
bursed. However, we identied critical factors in these studies patient and caregivers are most in need. Telephone
that, if adopted, could become the basis of successful home visits to provide care have been shown to be an
care palliative nursing. These include the following: effective strategy for chronic illnesses in which the
needs are for support and education. Home care can
1. Staff nurses who are responsible for direct patient care also be used for short durations in crisis situations.
in the home must have contact and access to APNs By providing intensive home care for short dura-
with specialized knowledge and skills related to the tions, patients can be helped to address current
disease-specic needs of patients. The term advanced issues in the most effective way. These short but
practice nurse is dened as a professional nurse intensive interventions can improve quality of life
and may also impact survival outcomes for some needed, the most appropriate setting for care, and
patients. the type of interventions required to improve the
3. Patients are usually hospitalized when symptoms get quality of life.
out of control. When patients are hospitalized, com-
prehensive discharge planning and follow-up by A growing number of cancer patients are being discharged
skilled palliative care nurses is needed to ensure that from the hospital following surgery or other cancer treatments
the plan is implemented, evaluated, and modied as to be cared for at home by spouses who have chronic illnesses
needed. These nurses may be based in a variety of themselves, as described by the following case study.
settings, such as home care agencies, clinics, and pri-
vate ofces. The complexity of symptom manage-
9=
ment following hospitalization may require the
case study
advanced skills of an APN to provide consultation
Mr. And Mrs. Rizzi, Patients with Chronic Illnesses
to the palliative care team or to implement a plan of
care with a patient and family. Mr. Rizzi, a 68-year-old Italian retiree, and his wife,
4. Patients who have complex problems and receive Mrs. Rizzi, aged 64, each have a chronic illness. Mr. Rizzi was
home care nursing need family caregivers who have diagnosed with Stage IIIA nonsmall-cell lung cancer following
been taught skills to provide care. In the event these 5 months of chest and shoulder pain, fatigue, dyspnea, weight
caregivers are ill themselves, additional or comple- loss, and persistent cough. Despite his medical history, he was
mentary services need to be provided to help with physically active until these symptoms, along with his cancer
the patients care. Nurses providing home care for ill treatment, constrained him. For 50 years before diagnosis,
patients should conduct ongoing assessments of Mr. Rizzi smoked two packs of cigarettes a day. He also had
family caregivers, including their health and a history of hypertension, osteoarthritis, and a healing
demands made upon them. Standardized educa- duodenal ulcer.
tional programs to teach family caregivers skills to Mrs. Rizzi was a part-time beautician who identied
provide care are needed and should be a part of herself as her husbands primary caregiver despite her own
routine home nursing care. comorbidities of hypertension, osteoarthritis, and diabetes.
5. The use of innovative models must be considered as a These conditions required regular medical management
strategy for providing care to patients and families. and caused some physical discomfort and loss of mobility.
Telephone visits have been shown to be an effective Mr. Rizzis treatment included a right upper lobectomy
strategy to help families cope with the caregiver that required chest drainage tubes and subsequent
role. Under prospective payment for home care, radiation therapy and chemotherapy. He was discharged
home care providers are no longer constrained by from the hospital 10 days after surgery. As with many
the per-visit method of reimbursement, and tele- postsurgical patients, Mr. Rizzi went home to be cared for by
phone visits can be integrated into the plan of care. his wife.
The use of alternative and complementary therapy, At discharge, Mr. Rizzis medical care included wound care
nutritional counseling or mental health therapies at the drain site for postsurgical chest tubes and management
has been made nancially reasonable due to the of symptoms from the disease and from treatment. He was
move to prospective payment. Telehealth programs concerned about his ability to recover and anticipated post-
have also been used effectively with patient popula- operative pain and loss of his independent, active lifestyle.
tions at home. Other technology interventions Despite her own chronic illnesses, Mrs. Rizzi reported her
could include the use of the Internet or E-mail. As overall health as good and considered herself t to provide
the technology becomes less expensive, increased home care. She was determined to help her husband with the
opportunity to implement these strategies physical and emotional needs associated with cancer and its
will occur. treatment. Mrs. Rizzi was unsure of her ability to manage her
6. While nurses are the hub of the palliative care team, husbands physical care and doubted her ability to distinguish
professionals from multiple disciplines should provide normal postoperative recovery from more serious complica-
palliative home care, and physicians must be an integral tions. She was apprehensive about her new role as manager
part of program management. The multidisciplinary of the family nances and worried about their ability to pay
care provided by therapists, nurses, para- their bills now that physical limitations prevented part-time
professionals, and physicians is essential to the employment.
development of positive outcomes. Physicians, as Mr. Rizzi was referred for home care at discharge to the
members of the multidisciplinary team, must work local VNA. This VNA was unique in having an oncology
in collaboration with other professionals to provide APN on staff to consult with the staff nurses on their cases.
comprehensive care to patients and families. Collab- Mr. Rizzis initial assessment visit was conducted within
oratively, the team determines the amount of care 24 hours following discharge from the hospital. The staff
Home Care 783
nurse learned that Mr. Rizzi needed wound care and symp- to review the care her husband received and her responses
tom management related to pain control and bowel regimen. to his loss.
She also conducted a family assessment and learned that o]
Mrs. Rizzi had concerns about her role as caregiver. Recog-
nizing the acuity of the problems identied, and after con-
sultation with an APN, the home care nurse scheduled the o]
Rizzis for daily home visits for a week to address the clinical Conclusion
problems of Mr. Rizzi and provide education to Mrs. Rizzi in
the caregiver role. Because maintaining the comfort of her For palliative care to be a viable component of the service
husband was Mrs. Rizzis primary concern, the home care provided by home care agencies, changes are needed in both
nurse taught her about pain management with medications the structure of home care and the mechanisms for reim-
and alternative comfort measures, such as massage, heat and bursement. The regulations for the provision of home care
cold applications, and guided imagery. In addition, the nurse under Medicare must be substantively modified to allow
referred the Rizzis to the VNA social worker to assist in deal- increased access to palliative care. Under the current regula-
ing with the nancial issues associated with Mr. Rizzis ill- tions, the physician is the only provider who has the ability to
ness. Following the week of intensive home care visits by the order and to supervise a home plan of care through home
nurse, she instituted telephone visits every other day for care agencies. The literature is consistent in its description of
2 weeks, followed by weekly telephone calls. Mrs. Rizzi used the positive role APNs play in supporting both the patient
the telephone calls to discuss changes in her husbands clini- and family caregivers in the home, yet APNs are not given the
cal situation and receive advice on how to manage minor authority to direct patient care through home care agencies
clinical problems. They were also a welcome source of sup- for patients needing palliation. Exceptions do exist through
port for Mrs. Rizzi as the complexity of the caregiving role hospital-based programs. For example, Memorial Sloan Ket-
increased. As the care of Mr. Rizzi became more complex, tering Cancer Center (New York) has a successful hospital-
the home care nurse spent a great deal of time reassuring based supportive care program that provides palliative care
Mrs. Rizzi that she was doing a good job. in the home for patients. This program is directed by an
One of the critical factors in Mrs. Rizzis ability to perform APN, and services are billed through the outpatient service.
the role of caregiver was the stability of her own health. Given Regulations that support the critical role APNs play in the
her comorbidities, Mrs. Rizzi might have fallen ill herself under clinical management of patients at home who require pallia-
the additional burden of the caregiver role. Instead, the home tive care and that legitimize the APNs ability to order and to
care nurse coached Mrs. Rizzi to pay special attention to her supervise the plan of care are essential. The few successful
own health during these stressful times. On each visit and tele- models in hospital-based and ambulatory clinics should be
phone call, the home care nurse inquired about Mrs. Rizzis implemented in home care agencies.
health, making sure she kept her primary care provider Additionally, the historical structure of Medicare reim-
appointments and adhered to her medical regimen. Opportu- bursement was a disincentive for the use of APNs in home care
nities for respite were arranged so that Mrs. Rizzi could go to agencies. Because of the regulatory changes in reimbursement
get her hair xed and retain some normalcy in her activities. to prospective payment, APNs will play an increasingly impor-
As Mr. Rizzi became more ill, Mrs. Rizzi consulted the tant role in the delivery of effective home care. As the demo-
home care nurse about a hospice referral. The home care graphics of the home care population change and the complexity
nurse consulted with the physician, who agreed that Mr. Rizzi of clinical problems increase, agencies can ill afford to be with-
had a prognosis of less than 6 months and was a good candi- out expert clinical providers.
date for hospice care. Because the VNA did not have a certi- The earlier case study had a successful outcome even though
ed hospice program, the home care nurse referred the Rizzis the current home care delivery system is fragmented. The need
to the local hospice provider in their community. Although it for palliative care to be integrated into both home care as well
was difcult to discharge the Rizzis from the home care as hospice care is essential for the provision of a continuum of
agency, at the hospice, Mr. and Mrs. Rizzi took advantage of care to patients at the end of life. For these changes to be inte-
the pastoral care services, art therapy program, and the addi- grated into the care delivery system, regulations need to be
tional resources available under Medicare, such as prescrip- changed to allow home care nurses to provide end-of-life care
tion drug coverage for medications related to the terminal in situations in which hospice care is unavailable, or at the
illness. The hospice nurse provided the majority of direct request of the patient or family.
care, with consultation with their APN on the team when In summary, home care is an important component of
Mr. Rizzis pain increased. Mr. Rizzi died at home following a palliative care. Clinical and regulatory barriers have forced
2-month service from hospice. The nurse was present with palliative care in the home to be provided by certied hos-
Mr. Rizzis family at his bedside when he died. The hospice pices at the end of life. Structural changes in home care are
nurse also visited Mrs. Rizzi twice after Mr. Rizzis death, needed to fully integrate palliative care into the home care
facilitating Mrs. Rizzis grief by providing opportunities delivery system. Additionally, the role of APNs must be fully
developed and reimbursement mechanisms established to 21. Wellisch D, Fawzy F, Landsverk J, Pasnau R, Wocott D. Evalua-
integrate palliative care into home care for both patients and tion of psychosocial problems of the home-bound patient: the
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42o] Marie Bakitas and Kathleen Daretany
Hospital-Based Palliative Care

We were so grateful that we could bring our dad into the hospital for his last days. We had cared for
him at home with the help of hospice for several months. He survived much longer than the doctors
and nurses predicted and we just got so tired. At the very end, the Palliative Care team and Hospice
helped us to get him admitted to our nearby hospital where they cared for him just like we did at
home. He was very comfortable for his last two days of life and they let us stay around the clock. It
was a gift to be with him those last days without having to worry about whether we could manage
his symptoms and doing all of the physical care.Family member of man dying of pancreatic cancer
Key Points One hundred years ago, the cause, age, and place of death were
The hospital is the appropriate site of care for some dying patients. very different from what they are now, at the turn of the new
It is important for all hospitals to develop a minimum standard of millennium. Table 421 compares some characteristics of dying
palliative care services that are consistent with the agencys care in 1900 and in 2000. Chronic illness and longer life are the
delivery model (e.g. primary, secondary, tertiary care). legacy of this century. The hospital is a common location for
Established internal (e.g., Quality Improvement Committee, Ethics a good portion of end-of-life (EOL) care in contemporary
Committee) and external (e.g., Joint Commission on Accreditation times, despite Americans stated preference for death at home.1,2
of Healthcare Organizations, Center to Advance Palliative Care) An analysis of the experience of dying among Medicare recip-
hospital-based quality improvement resources and committees can ients (based on claims data for 19951996) demonstrated that
assist with the development or improvement of a hospitals the incidence of dying in hospitals varies, but in some regions
palliative care program. of the United States it approaches 50% (Figure 421).3 An
Early introduction of palliative care principles in the disease additional 25% to 35% of the nations elderly die in nursing
trajectory and early identication of appropriate palliative care homes.2,4 Although a percentage of patients experience their
patients allows for planning to meet patient preference for end-of- nal admission in the critical care unit, by and large hospital
life care. deaths occur in noncritical care units3 and are likely to be
It is important to develop infrastructures of care outside the hospital anticipated for hours or days before death actually occurs.5
so that alternatives exist to hospital admission at end of life. Several investigators have described the quality of dying in
the acute care hospital.68 These studies have found that patients
experience pain, dyspnea, anxiety, and other distressing symp-
toms up until the time of death. Table 422 summarizes
Table 421
Comparison of Death and Dying in 1900 and in 2000
1900 2000
Life expectancy 47 y 75 y
Usual place of death Home Hospital
Most medical Paid by family Paid by
expenses Medicare
Disability Usually not much 2 y, on average
before death
Source: Lynn and Adamson (2003), reference 1.
787
Figure 421. Dartmouth Atlas Map of Incidence of Death in Hospital. Source: Wennberg J,
Cooper M, eds. The Quality of Care in the United States: A Report on the Medicare
Program/Dartmouth Atlas of Health. Chicago: AHA Press, 1999. Reprinted by permission.
Hospital-Based Palliative Care 789
largely one of system design. Inpatients are cared for in a system

Table 422 that is designed to provide acute, episodic interventions for
Selected Results from the Study to Understand Prognoses
patients with reversible disorders. This philosophy is exempli-
and Preferences for Outcomes and Risks of Treatments
ed by hospital policies that require all persons having patient
(SUPPORT)
contact to be certied in the provision of cardiopulmonary
Study aims resuscitation (CPR), so as to be able to rescue any patient who
To document and inuence patterns of communication experiences cessation of respiration or heartbeat. The applica-
(patient/family/health care team), frequency of aggressive tion of this death-reversing intervention is applied to all hospi-
treatment, and characteristics of hospital death talized inpatients unless specically ordered to the contrary.
Clearly, in such institutions, patients who are dying are viewed
Methods
as exceptions that require special additional thought, paper-
Two-phase study in ve academic medical centers work, and attention to receive a different sort of care.
Phase I: 2-year prospective observational study (N = 4301) Implementation of other tenets of palliative and hospice-
Phase II: 2-year controlled clinical trial with intervention type care may not be consistent with standard hospital policy.
group (N = 2652) and control group (N = 2152) For instance, having family, friends, pets, and familiar items
in the immediate patient environment often requires special
Intervention
exceptions or violations of standard hospital protocols. In many
A specially trained nurse had multiple contacts with institutions, beloved pets, home audio equipment used for lis-
patient/family/health care team to facilitate communications
tening to special music, or multiple signicant others sitting
and to provide physicians with accurate information about
around-the-clock vigils are considered contrary to standard
patients prognoses and preferences for care.
hospital infection control, electrical use rules, and security poli-
Main results cies. As stated by Berwick on the nature of system improvement:
There were no differences between the control group and the Every system is perfectly designed to get the results it gets.9 In
intervention group on the measures of the study, which the case of EOL care, it is hard to imagine how hospital-based
included: EOL care could occur any differently than it does. A change in
Communication between physician and patients the quantity and quality of deaths in hospital will come about
(discussions of CPR preferences) only as a result of fundamental system reform and redesign.10,11
Number of days spent in an ICU receiving mechanical This situation ought not to be viewed as discouraging, but
ventilation and in coma rather as a call to action, particularly for nurses. Because peo-
Level of pain reported by patient ple are admitted to hospitals primarily to receive nursing care,
Use of hospital resources much of the care and the system that patients experience can
Further, based on interviews with 3357 survivors: be inuenced by nurses at all organizational levels. (Most
40% of patients died in severe pain other types of care, such as physician consultation, diagnostic
55% were conscious tests, and pharmaceutical treatments, are available in outpa-
63% had difculty tolerating symptoms tient or home settings). The information contained in this
chapter is usable by all hospital-based nurses, including senior
Source: Data from Lynn et al. (1997), reference 8.
nursing leaders, clinical nurse specialists, nurse practitioners,
nurse managers, educators, quality improvement nurses, and
especially nurses on the front line at the bedside. Nurses can
dene, direct, and lead multidisciplinary and interdisciplinary
selected ndings of the well-known Study to Understand teams and modify efforts at multiple levels of the hospital care
Prognoses and Preferences for Outcomes and Risks of Treat- system to improve this complex care process.12,13
ments (SUPPORT). This multi-hospital, two-phase investiga- This chapter outlines how nurses and others can take a
tion attempted to alter the quality of the hospitalized adult leadership role in improving the quality of EOL care in acute
EOL experience by reducing the frequency of a mechanically care hospitals. Some improvements may result from the use
supported, painful, and prolonged process of dying by increas- of specic quality improvement methods, whereas other
ing communication and improving the provision of informa- improvements may not employ this specic process. Although
tion necessary for decision-making among patient, family, and a step-by-step primer on the process of quality improvement
their health care providers.5 is beyond the scope of this chapter, a detailed discussion is
The discouraging outcomes from SUPPORT and other found in Chapter 39; other excellent sources are also avail-
studies cannot be explained by providers lack of awareness able.14 In addition, this chapter focuses on methods to reduce
or inability to relieve symptoms. Many studies in the area of hospital admissions at the EOL. Individual and multihospital
pain management demonstrate that effective methods exist to innovations to improve hospital-based EOL care are described,
relieve cancer pain in 90% of patients.2 It is also not the case including examples from hospitals that have used the approach
that acute care hospitals employ unskilled, insensitive person- of developing critical pathways and protocols and new services
nel who allow suffering to occur. Rather, the issue appears to improve care, such as palliative care consulting teams and
inpatient palliative care units (PCUs). In closing, economic decided to follow-up with the outpatient oncology clinic to
issues that inuence the quality and quantity of hospital-based consider anticancer treatment for symptom relief.
palliative care and future directions complete the discussion. o]
Lessons Learned
o] Interdisciplinary PCT is effective in addressing
Hospital-Based Palliative Care as a Process patient/family needs.
Mandated, ongoing pain assessment practices
9= within the hospital setting supported the ability to
case study rapidly determine a pain relief plan.
Mr. D, a 64-Year-Old Man with Severe Abdominal Pain Advance directives are best determined before an
emergency or crisis situation occurs.
The interdisciplinary palliative care consultation team (PCT) Effective palliative care involves the patient and
was asked by the general internal medicine service to see the family.
Mr. D, a 62-year-old man who presented to the emergency Palliative care and disease-modifying treatments can
room with uncontrollable severe abdominal pain. The be rendered concurrently.
patient reported several weeks of anorexia and a 15-pound The palliative care teams expertise in pain and
unintentional weight loss. After a laparotomy and liver symptom management can be helpful to the patient
biopsy, he was found to have a large pancreatic mass, which and family and to the primary medical team.
was positive for adenocarcinoma and multiple peritoneal
metastases. Within 24 hours after diagnosis, the medical
9=
team placed concurrent palliative care and oncology consul-
case study
tations. The former requested the need for assistance with
Mr. F, a 75-Year-Old Man with Bilateral Hip Fractures
uncontrollable pain, symptom management, prognosis/
diagnosis explanation, and safe and appropriate discharge; Mr. F, a 75-year-old man, was admitted to the medical/
the later requested identication of anticancer treatment surgical unit after a fall at home with bilateral hip fractures.
options. He had undergone open reduction with internal xation of
The palliative care teams initial assessment revealed that his hips bilaterally. His past medical history was signicant
the patient was a retired train operator who lived with his for metastatic lung cancer with bony involvement and
wife. He had two sons who lived within 15 minutes of his chronic obstructive pulmonary disease. Postoperatively, he
home. He had no religious afliation but identied himself as developed intermittent confusion, cough, and dyspnea. A
spiritual and accepted visits from the PCT pastoral care chest radiograph revealed a right upper lobe inltrate, and
provider. Mr. Ds goals were to be free of pain, to be ambula- intravenous antibiotics, supportive oxygen therapy, nebulizer
tory, and to go home as soon as possible, so he could nish treatments, and close observation were instituted.
working on a project he had started for his youngest sons Mr. Fs respiratory status worsened, and he required
wedding, three months hence. Comprehensive pain assess- increasing oxygen via nasal cannula and then via face mask.
ment revealed constant, gnawing, vague pain with an inten- As his condition declined, he was asked by the intern if he
sity score of 6 (on a pain scale of 0 to 10). His personal goal would like everything done for him. He continuously nod-
for pain relief was a score of 2. Mr. Ds pain medication regi- ded his head Yes to the question. Shortly after this discus-
men was adjusted by the PCT nurse practitioner to provide sion, Mr. F suffered a respiratory arrest, for which he
pain relief at his tolerable level. received CPR, intubation, and mechanical ventilation. He was
In addition, the PCT organized a patient/family meeting transferred to the intensive care unit (ICU) in critical condi-
the next day. The meeting was held in the patients room so tion. No family members could be identied to assist the
that he could participate in the discussions. In attendance medical team with decision-making.
from the family were the patient, his wife, and both of his While he was in the ICU, a Swan-Ganz catheter and cen-
sons. The PCT physician, social worker, nurse practitioner, tral line were inserted, multiple daily blood draws were taken,
and a nurse practitioner student were also present. Discus- and Mr. F was heavily sedated to prevent him from dislodg-
sion included the patients understanding of his diagnosis, ing his tubes. His medical condition progressively deterio-
prognosis, and the inuence and meaning of the disease on rated, and the medical and nursing staff became increasingly
his goals of care. Advance directives, health care proxy, and frustrated, feeling helpless and not knowing Mr. Fs goals of
a plan for long-term care at home after discharge were care. After multiple attempts, a neighbor was nally con-
also discussed. tacted who said he didnt really know the patient well enough
The next day, the patient chose his oldest son as his health to understand what he may have wanted done at this point.
care proxy, and his pain was in control under the new regi- After a 2-week ICU stay, Mr. F developed sepsis. Eventually,
men. A smooth transition was made to a home hospice he died in the ICU.
agency by the PCT social worker. In addition, the patient o]
Lessons Learned hospitals can create care systems that result in improved EOL
outcomes for patients requiring hospital-based care.
Discussion of advance directives should take place
with patients when they have capacity and are not
in crisis.
o]
Early introduction of palliative care specialists may
Avoiding Hospitalized Death
help to clarify and document patients goals of care
and pain/symptom management preferences.
Perhaps one of the most important ways to improve hospital-
Medical and nursing staff education about advance
based palliative care is to develop other infrastructures of care
directives, palliative care, and EOL issues can estab-
outside the hospital, so that alternatives to inpatient admission
lish baseline competence levels.
at EOL exist. Alternatives such as home hospice care or skilled
Lack of advance planning can result in health care
hospice care within assisted-living centers, free-standing hos-
provider frustration, fatigue, and moral distress.
pices, or specially designated areas in nursing homes or reha-
Unnecessary patient and staff suffering can be mini-
bilitation facilities15 can provide expert palliative and hospice
mized if palliative care education and policies are in
care at the EOL. However, many areas of the United States lack
place to support patient identication of goals
these sorts of options. For instance, in some rural areas, health
of care.
care services such as visiting nurses or home care are sparse
Both of these cases illustrate ways in which EOL care occurs or unprepared to care for people who require intensive EOL
in hospitals. Each case is followed by Lessons Learned, which care.16 Some visiting nurse and home care agencies may see
summarize areas of palliative care exemplars and areas ripe for so few symptomatic persons at the EOL that it is difcult to
improvement. Table 423 outlines a high-level process of care maintain adequate palliative care and hospice expertise in these
that illustrates typical hospital-based EOL care similar to agencies.
that described in the case of Mr. F. Areas for improvement To improve the care that nonhospital systems provide, it
(some of which were illustrated by the case of Mr. D) are sug- is imperative that these organizations provide sufcient and
gested adjacent to the process steps. These issues and cases appropriate education and training for their staff about the
serve as a basis for the remaining discussion of ways in which care possibilities at EOL. Organizations should encourage staff
Table 423
Process of Care for Seriously Ill Hospitalized Patient at End of Life
Current Process of Care Possible Areas of Improvement
Symptomatic, seriously ill patient Prospective symptom management to

admitted to emergency avoid hospitalization
department (ED) Advance care planning communicated to
care team
Work up by ED staff Direct admission of symptomatic/respite patients
Admission to medical unit Availability of palliative care unit/consult team
Diagnostic workup continues Minimize/standardize diagnostics to focus on ones
with medical house staff that contribute to comfort
Physician notied Physician aware and guiding admission process
Initial plan of care determined Plan of care states palliative care goals, advance care
planning, patient preferences
Treatment is implemented and Palliative care pathway and/or standardized
symptoms managed symptom assessment
Team acknowledges that patient Patients prognosis and preferences guide palliative
is dying care plan from time of admission
Do-not-resuscitate (DNR) status DNR status determined on admission; admission
determined plan of care includes patients care preferences in
addition to DNR status
Comfort measures implemented Appropriate comfort care measures implemented
at admission
Patient dies in hospital Patient dies in preferred site of death
Bereavement care offered to family after the death
members to participate in conferences on EOL and palliative who are eligible for palliative care and/or hospice care and to
care and also should support them through the continuing identify alternatives to hospitalization in the long-term EOL
education process (e.g., becoming certied in a specialty). care plan. Early identication can take place at the beginning
Both the nursing and medical professions have embraced the of the disease trajectory or at the point of a hospital admis-
concept of further EOL education and certication. The End- sion. A good example of putting this concept into practice was
of-Life Nursing Education Consortium (ELNEC) and Educa- illustrated in the rst case study in this chapter, that of Mr. D.
tion for Physicians on End-of-Life Care (EPEC) are examples As soon as the patient was admitted to the hospital and a life-
of this approach for nursing and medicine, respectively. limiting illness was diagnosed, concurrent palliative care and
The lack of hospice and palliative care expertise outside the oncology consultation requests were placed.
hospital can be compounded by another very real problem, Early recognition of patients who are eligible for palliative
reimbursement for out-of-hospital EOL care. This problem care and prompt referral to experts in the eld is a vital step in
must be viewed in the context of the Medicare hospice benet, the process of integrating effective palliative care into hospital
which in 2004 provided a standard per diem rate of $118.08 for care. Putting prospective screening mechanisms in place can
routine home care; $689.18/d or $28.72/h for continuous care reduce the number and type of hospital admissions for pallia-
during a crisis to maintain a patient at home; $122.15/d for up tive care. For instance, consider the situation of discharging a
to 5 days of respite care; and $525.28/d for hospital, skilled, or patient with adequate relief of pain but no long-term plan for
free-standing inpatient hospice care for symptom manage- dealing with worsening disease and increased pain. In this
ment.17 These amounts are intended to cover all care needs, case, neglecting the bigger problem of long-term pain man-
including nursing, home health aides, other discipline visits, agement only postpones the problem until a later date, when
pharmaceuticals, and medical equipment. For many patients pain is likely to increase and the only available solution will
eligible for Medicare hospice care, effective palliative inter- be readmission. In addition to creating a long-term plan for
ventions for symptom management (e.g., radiation therapy, already-hospitalized patients, prehospitalization programs that
chemotherapy, higher-priced supportive care medications for identify elders at home or in nursing homes who do not wish
nausea and pain) are costly, given the reimbursement rate. to have their conditions treated in a hospital can preclude unde-
Hence, patients who could otherwise benet from hospice sired admissions.
care are delayed in accessing the benet until all of the afore- The Patient Self-Determination Act (PSDA) of 1991 requires
mentioned palliative treatments have been applied. that hospitals and other organizations receiving Medicare or
It is therefore not only an issue of patient identication, but Medicaid funding provide written information to patients
also one of nance, that is responsible for late hospice refer- about their rights to make decisions accepting or refusing
rals. Quality improvement efforts directed at improving EOL medical care.22 Further, it stipulates that advance directives,
care by encouraging earlier referrals to the Medicare hospice including living wills and appointment of a health care proxy,
benet that ignore the nancial issues are likely to fail. Agen- may be used to provide substituted judgment in the event of
cies that place patients on the Medicare benet despite ongo- patients inability to speak for themselves regarding health care
ing expensive treatments are likely to nd themselves in a state decisions. On the surface, this legislation appeared to be an
of nancial instability. infrastructure to improve EOL care in hospitals. Theoretically,
Another barrier that must be overcome to realize lower inpatients would outline their preferences for certain types of
hospital death rates is that of home care provision in the current treatments in a document or through a proxy to guide health
culture of single-parent and two-parent working families. Cur- care providers. For several reasons, however, this legislation
rently, 75% of women work outside the home, yet they are often has had little impact in dening the type of care received by
the ones called upon to provide care for ailing family mem- hospitalized patients.23 Unfortunately, not all patients actually
bers.18 When patients are enrolled in the Medicare hospice ben- choose to complete advance directives; the documents apply
et, it is assumed that a family member or other person will be only if the patients are incapacitated; they may not be specic
with the patient every day19 and that hospice staff will visit inter- enough to address the situation in which patients nd them-
mittently. For symptomatic or very ill patients, a family member selves; and, when they do exist, the health care provider may
may need to take a leave of absence or risk jeopardizing employ- not be aware of them,5 or the health care proxy may not inter-
ment to provide adequate coverage for home care. Providing pret them as the patient intended.24
EOL care to a family member for an extended period can result Under the Patient Self-Determination Act, institutions are
in out-of-pocket medical expenses and lost income from both required to ask patients whether they have advance directives
the patient and the caregiver, creating signicant nancial bur- and then provide the appropriate information about them.
dens.20 In these cases, a reimbursable hospital stay may be the The Act does not stipulate who in the health care agency is to
only choice for family respite. The Last Acts Workplace Task give this information to patients and their families. Often,
Force has prepared a report of an employer survey and a set of inexperienced personnel distribute the information without
model activities designed to help caregivers and their families providing appropriate explanation of the documents, leading
with ill or dependent relatives in need of workplace supports.21 to lack of completion by patients.
Another mechanism to prevent hospital admissions is to In the second case study, that of Mr. F, there was no evi-
develop a system that allows for early identication of patients dence of advance care planning before the patients hospital
admission. In this example, the topic of advance directives was ENABLE II, to test the effectiveness of an intervention to
introduced too late and inappropriately during the patients improve quality of life for people with newly diagnosed metasta-
hospitalization. The patient was experiencing respiratory dis- tic or recurrent breast, lung, and gastrointestinal cancers. The
tress and was asked if he would like everything done for him. intervention was designed to enhance the care that patients
If the topic had been discussed earlier in his admission and he already receive at DHMC through nurse educator sessions and
had been provided with comprehensive information regard- Shared Medical Appointments (SMAs) with a palliative care
ing his prognosis and probable course of illness, the outcome physician and nurse practitioner. The nurse educators in this
may have been different. Improving and avoiding hospitalized study are available for resource allocation, education, and care
death requires earlier discussions between patients and their coordination. Patient caregivers are encouraged to participate in
providers regarding the diagnosis and prognosis and intensive the discussions with the patient and the nurse educator. It is
health care provider education on the skill of communicating hypothesized that, with the addition of the nurse educator and
bad news and discussion of CPR. the availability of the SMAs, patients will have an enhanced qual-
Recent research and improvement efforts have attempted ity of life and care consistent with their values and preferences.
to study this phenomenon and improve the availability of such The rst case study, that of Mr. D, demonstrated the impor-
information and the consistency between patients stated pref- tance of early identication of patients so that advance direc-
erences and the actual care administered.14,25 Incorporating tives and patient/family-centered care could be planned. The
such endeavors into quality improvement activities has the introduction of palliative care at the time of diagnosis allowed
potential to inuence hospital-based EOL care.26 An encour- for appropriate and effective utilization of the palliative care
aging nding in one chart review of deaths of hospitalized services. If a patient is identied early in the course of illness,
patients indicated an increased implementation of comfort the palliative care team can act as a resource, or consultant, to
care in patients at the EOL in the minority of patients who had the medical team. At this time, the palliative care specialists
specied a proxy decision-maker, compared with those who can provide information about good symptom and pain man-
had not specied anyone.27 agement and help with psychosocial issues that may arise. As
Innovative approaches to avoiding unnecessary hospital- the patient nears death, and the goal of care becomes focused
ization or other undesired care at the EOL are being tested more on comfort, the palliative care team becomes more
through the Robert Wood Johnson (RWJ) Initiative Promot- prominent in caring for the individual and the family.
ing Excellence in End of Life Care. (A full description of this Many states laws have provisions for patients at home who
program and the specic projects of the grantees is available are dying and do not want to be resuscitated to use home label-
on the Last Acts website, http://www.edc.org/lastacts/, accessed ing systems such as a DNR bracelet, sticker, or forms. Specic
February 1, 2005.) In demonstration projects, strategies designed details can be obtained in a 138-page report that details the
to move the knowledge and decision-making about palliative results of a national survey conducted in 1999 of state laws
care options earlier in the course of illness than is currently the and protocols providing for do-not-resuscitate (DNR) orders
norm were tested. Four comprehensive cancer centers attempted effective in nonhospital settings.32 In New Hampshire, before
to integrate palliative care options and approaches at the time the DNR bracelet for home use was adopted, emergency med-
of diagnosis of life-threatening, poor-prognosis cancers such ical technicians were required to begin resuscitation and trans-
as of the lung.28 port the patient to a hospital, even if it was clear that this was not
One example, Project ENABLE (Educate, Nurture, Advise the patients wish. Often, despite teaching, the family faced with
Before Life Ends), identied and enrolled all patients with a dying loved one panicked as breathing became labored, heart
incurable lung cancer, advanced gastrointestinal malignancies, rate slowed or stopped, or bleeding ensued. Even if documents
and metastatic or recurrent breast cancers at the time of diag- such as living wills and durable powers of attorney for health
nosis into a program that emphasized palliative care options. care were produced, this did not release the emergency medical
The program provided nurse coordination, prospective stan- technicians of the responsibilities of response. In conjunction
dardized symptom assessment, and an educational curricu- with New Hampshire Emergency Medical Services, a procedure
lum that focused on topics of empowerment for patient and was developed for outpatients and prehospital care personnel to
family decision-making and communication.29,30 Unlike the indicate patient preferences for no emergency care if cardiopul-
nurse coordinator of the SUPPORT study, these advanced monary arrest occurs outside the hospital.33 The DNR bracelet,
practice nurses (and nurse practitioners) were members of which looks similar to a typical green hospital bracelet except
the oncology care team and provided non-threatening, expert that it is blue, can be obtained from a local hospital on comple-
intervention that had prospectively garnered the support and tion of specic paperwork. In the event of cardiopulmonary
sanction of the care team. This collaborative approach empha- arrest at home or in an emergency department, this bracelet
sized shared ownership of the process and, to date, seems to releases the responders from providing emergency care other
have been successful in inuencing and shaping the care tra- than comfort care, symptom relief, and family support.
jectory for this population.31 Finally, despite the development of nonhospital sites of EOL
Because of the success of the ENABLE project, Dartmouth- care, one analysis concluded that the main impetus behind hos-
Hitchcock Medical Center (DHMC), funded by the National pital death is the number of hospital beds available in a referral
Cancer Institute (NCI), developed a randomized clinical trial, area.34 This study suggested that, regardless of the availability of
out-of-hospital alternatives, hospital deaths will continue at a consultant to the primary and secondary levels in difcult
higher rate in areas that have abundant hospital beds available clinical situations. Practitioners and institutions involved at
than in those areas with fewer beds. Since that report was pub- the tertiary level of palliative care are also involved in educa-
lished, another study from Oregon, which has had the lowest in- tional and research activities.37 It is the responsibility of all
hospital death rate in the United States (31%), identied factors hospitals and health care organizations to be competent, at a
that facilitate arrangements for death to occur outside the hos- minimum, at the primary level of palliative care. However,
pital.35 Many of the factors already mentioned were found to be regardless of level, different components of care may be incor-
signicant in the Oregon study, as evidenced by the following porated into the model; some are less resource intense (e.g.,
quotation: For Oregon, it seems that economic forces and care pathways), and others may require additional allocations
trends, coupled with an array of end-of-life resources, foster an of budget and personnel. The various levels of hospital-based
environment in which patients and families more often obtain palliative care and their components are described in greater
care during the lasts days of life in the setting they prefer.35 detail in the following sections.
Primary Palliative Care

o]
Models of Hospital-Based Palliative Care Primary palliative care should be available at all hospitals. This
level of care requires a minimum of provider education in basics
Promoting palliative care in the acute care hospital requires a of pain and symptom management. The JCAHO has identied
myriad of resources. Depending on the model of palliative care minimum standards that should be present (see later discus-
being introduced, the required resources can vary greatly. For sion). Additionally, in April 2004, The National Consensus
example, some changes may require nancial support via con- Project for Palliative Care released Clinical Practice Guidelines
struction or addition of staff, whereas other changes are less for Quality Palliative Care. The guidelines, which can be
resource intensive. Regardless of the hospital and the availabil- downloaded free of charge from their website (http://www.
ity of resources, all health care practitioners have the ability to nationalconsensusproject.org, accessed February 1, 2005), rep-
introduce palliative care concepts and use already established resent a consensus of ve major United States palliative care
resources to develop or improve their palliative care program. organizations: the American Academy of Hospice and Pallia-
According to von Gunten,36 One way that patients and their tive Medicine, the Center to Advance Palliative Care (CAPC),
families will get better care is to ensure that clinical services the Hospice and Palliative Nurses Association, the Last Acts
focusing on the relief of suffering are available in every hospi- Partnership, and the National Hospice and Palliative Care
tal (p. 876). He suggested that hospitals consider their mission Organization. The guidelines identify core precepts and struc-
and level of palliative care deliveryas for other medical spe- tures of clinical palliative care programs. Domains of palliative
cialties (e.g., primary, secondary, tertiary)and incorporate a care from the guidelines are listed in Table 424. The domains
model of palliative care resources in accordance with that level. can serve as a framework for hospitals to develop and evaluate
Primary palliative care refers to a level of care whereby their approach to a comprehensive palliative care program.
basic skills and competencies are required of all physicians,
nurses, and other health care practitioners. All practitioners
should be competent at this level. Providers can gain the
knowledge, attitudes, and skills needed to provide palliative Table 424
care to their patients through basic training and clinical prac- National Consensus Project: Domains of Quality Palliative
tice. Training such as the EPEC and ELNEC programs can Care Identied as the Framework for Clinical Practice
provide comprehensive education that is needed at a mini- Guidelines for Quality
Palliative Care*
mum level.36 Both educational programs are discussed in
more detail later in this chapter. 1. Structure and processes of care
Secondary palliative care refers to a model in which all 2. Physical aspects of care
providers have a minimum level of competence and in addi-
3. Psychological and psychiatric aspects of care
tion have specialists who provide palliative care through con-
4. Social aspects of care
sultation services or specialty unit care (or both). The
development and success of the consultation team, in most 5. Spiritual, religious, and existential aspects of care
instances, is guided with the training and expertise of hospice 6. Cultural aspects of care
organizations.36 It is not necessary for the team to evaluate 7. Care of the imminently dying patient
every patient with palliative care needs who is admitted to the 8. Ethical and legal aspects of care
hospital, but these specially trained clinicians are available as a
resource and guide for their colleagues. *References supporting the recommendations are included within the
Additionally, major teaching hospitals and academic cen- guidelines.
Source: http://www.nationalconsensusproject.org/guidelines.pdf (accessed
ters with teams of experts in palliative care are classied as ter- March 14, 2005).
tiary organizations. A tertiary-level practitioner serves as the
Medical and Nursing Education: A Key Component of EOL symptom management, decision-making, and critical
of Primary Palliative Care communication skills. Until recently, neither textbooks nor
clinical experiences were available to provide critical guidance
The majority of students in medical, nursing, and other health to health professionals in how to provide effective EOL care.
care disciplines receive clinical training for practice in hospi- On a positive note however, funding is becoming available to
tals. Until recently, with the shift to ambulatory care, the study the issue and develop solutions.4446
majority of medical and nursing student education was pro- The introduction of programs in nursing and physician
vided in the hospital setting. However, few hospitals provided education has provided an important resource in education
role models for teaching palliative care practices. The follow- regarding EOL principles of care. The ELNEC program is partly
ing is one of several comments made by family members sponsored by the American Association of Colleges of Nurs-
about the insensitive way the act of pronouncing the death ing. The program is discussed in further detail in Chapter 60,
of their loved one was handled by house staff 38: but in brief, it is a curriculum developed to train nurse educa-
tors to provide undergraduate and graduate nursing students
I was holding his hand when he stopped breathing.
and practicing nurses with EOL education. The American
I called the nurse who called the doctor. He went over
Medical Association (AMA) and the RWJ Foundation have
and looked at him lying in the bed, listened for a heart-
developed EPEC, a program that addresses similar issues for
beat with his stethoscope and said, Hes dead, and
physicians. Both curricula are widely available as a means to
walked out of the room. Thats it, not Im sorry, no
educate nursing and medical staff.
Is there anything we can do? just Hes dead. It was
Lastly, nurses have developed a number of other initiatives
painfuland made us think that the staff didnt care.
to advance professional knowledge and competency in EOL
It is not surprising that this death occurred at the beginning care. The American Nurses Credentialing Center (ANCC)
of July, when interns began their rst rotations directly out of administered the rst palliative care advance practice nurse
medical school. A study by Ferris and colleagues39 documented certication examination in May 2003.47 Since the development
that medical schools devote little time to care of dying patients. of the examination, hundreds of advance practice nurses, both
A survey of medical interns revealed signicant concern and nurse practitioners and clinical nurse specialists, have become
fear about providing these services with no or little supervi- nationally board certied as palliative care specialists.
sion. Lacking role models, the traditional See one, do one, Chapter 60 discusses the topic of nursing education in detail.
teach one supervisory principle of medical education was in- For the purposes of this chapter, it is important to remember to
effective. One resident explained that the pronouncing experi- involve students in the process of palliative care education and
ence was not one that was perceived as causing harm when change. Improvements in hospitals should address the learning
performed by the inexperienced. Another stated, I felt really environments of students. Specic ideas for improving the inter-
inadequate, I had absolutely no idea what to do when the nurse face between education and quality improvement of hospital-
called me to pronounce this patient whom I had never met based palliative care include the following:
my rst night on call. I was never taught the stepshow long
should I listen to the chest to be sure there was no heartbeat; Arrange for clinician role models to provide lectures
what, if anything else, I should do; what should I say to the fam- to students and faculty.
ily. Thankfully, the death coordinator was there to help me ll Assist with curriculum review of current EOL
out the paperwork. Conversely, in states where nurses are care training.
allowed to pronounce deaths, some course work exists to teach Change elective coursework and clinical work
a process that gives attention to the family. in hospice and palliative care to required status,
Clearly, such a predictable and easily dened process is and include these subjects in other mandatory
amenable to quality improvement if it is identied as an educa- clinical assignments.
tional priority for an institution or health care provider. A sam- Use texts that contain clinically relevant palliative
ple pocket card developed from multiple data sources of such a care content.
project is shown in Figure 422. This is printed internally on Include content on ambulatory-based symptom
brightly colored stock on a standard laser printer so that it can management and decision-making that denes
be easily modied and so that quantities are readily available. A patient preferences for care.
similar card was developed by others as part of a multimedia Encourage students to describe evidence-based
packet for resident education, called the Art of Compassionate approaches to palliative care and to challenge their
Death Notication.40 Other components of this comprehensive mentors about approaches and interventions
program include a facilitators guide, manuals for learners, and that increase the burden of care without clear
videos demonstrating communication skills. patient benet.
The problem is further compounded by the lack of EOL Encourage students to learn from staff role models
content in student curricula41 and major textbooks.42,43 These appropriate ways of communicating bad news and
sources have been analyzed and have been found sorely lack- of presenting options that respect patient prefer-
ing in the content that would inform students about the basics ences and values.
Assigning time frames to address needs helps in monitoring

progress and tracking outcomes that have been met, as well as
those that continue to need attention.
Although published guidelines and standards may offer
similar suggestions, the road map format of clinical pathways
identies practical and accountable mechanisms to keep
patient care moving in the direction of specic identied out-
comes. Some pathway forms allow for documentation of vari-
ation from the designated path. Analysis of several instances of
variation might alert a care team about a potential system
defect in need of improvement. Additionally, Figure 423
illustrates a sample form for a brief, practical, but informative
chart review that can be used to evaluate care of patients who
died in a hospital environment.
Many institutions have implemented standard orders or
evidence-based algorithms to guide various aspects of care per-
tinent to EOL situations. Some of these include limitations of
certain types of therapies such as CPR and blood pressure
medications. In addition, preprinted order sheets that outline
management of symptoms and side effects such as nausea,
constipation, and pain are making it easier for physicians
and trainees to reproduce comprehensive plans that do not
vary because of individual opinion. These order forms can be
valuable teaching tools in a setting of regularly changing care
providers. Figure 424 shows a sample order sheet and the com-
panion guidelines printed on the reverse for patients who are
hospitalized and have a palliative focus of care. Certainly,
important considerations in the development of such recipes
for care include having broad, multidisciplinary, evidence-
based input. The process of producing such documents is also
potentially a care consensus and learning environment for
Figure 422. Pronouncement card used as a reference at the time of many teams.
death. 1998 DHMC End of Life Project. It is perhaps one of the greatest misconceptions that once
a person no longer seeks curative treatment there is nothing
more to do. Palliative care is aggressive care directed at com-
Identify opportunities for undergraduate or gradu- fort. All practitioners are responsible to ensure that, when
ate fellowships in palliative care. cure is no longer possible, the patient and family can have
As part of quality improvement teams, offer stu- condence that everything will be done to provide pain man-
dents opportunities to become data collectors from agement and relief of suffering. It is particularly important
patients, charts, and staff. for health care providers to be cognizant of this fact when
caring for individuals in the hospital at the EOL. Nurses in
Palliative Care Pathways, Standards, particular can advocate through development of hospital
and Aggressive Comfort Treatment policy, education, and individual practice for aggressive com-
fort care. The health care team must ensure that a positive
Reducing variation is a major strategy used by quality improve- approachfocusing on what can be done for dying patients
ment leaders. Variation refers to the uctuations in a process and their familiesis implemented.
that can result in delays or unpredictable outcomes.48 A
patient with a serious illness who is experiencing an acute cri- Hospital-Based Bereavement Programs
sis may follow many different paths. Numerous institutions
have studied their current processes of care and have created Improving the quality of EOL care in hospitals does not end
clinical pathways that can help standardize procedures and with the development of mechanisms to ensure peaceful,
reduce the variation of care experienced by terminally ill or pain-free patient death. Although accomplishing this goal is
symptomatic palliative care patients as they traverse the com- surely a comfort to family and friends, the aftermath for sur-
plex health care system.49,50 Usual components include atten- vivors is an important nal step in the process of EOL care.
tion to patient symptoms as well as family needs at system Which families are most in need of specic services? Identify-
entry and throughout the course of stay until discharge. ing families at the greatest risk has been the topic of palliative
Figure 423. End-of-Life Hospital Chart Review. Source: 1997 Center to Improve Care of the
Dying.
798
Figure 424. Comfort Measures Physician Orders sheet (left) with guidelines for care as
reference for house staff education on the back (right). Source: Dartmouth-Hitchcock Medical
Center, June 2004; may be reproduced for noncommercial purposes.
care research, particularly in evaluating the quality of pallia- multicomponent programs with many staff and a mission of
tive care services.51 service, research, and education.
Bereavement services for survivors are an important part of
the total care plan after the patients death (see Chapter 27). Palliative Care Consultation Teams
Adverse physical and psychological outcomes of unsupported
grief are known to occur during the bereavement period. A growing literature summarizes the development of palliative
Because of this, bereavement services are a typical component care teams within hospitals to offer specialized consultation
of the services offered to families when patients die as part of a and expertise to patients, families, and other health care
hospice program. Because only 10% of all deaths in the United providers. Dunlop and Hockley published a manual in 1990
States have hospice involvement in EOL care, a large portion of and a second edition in 1998 describing the experience in En-
families must rely on follow-up offered by other care providers. gland.54,55 They described the movement as one that tries to
Few hospitals routinely offer bereavement services to families take the hospice philosophy of care and bring it into the hos-
after patient deaths in hospital.52 pital using a consultancy team. More recently, U.S. and Cana-
Evaluation of services during the bereavement period serves dian hospital-based teams have described their experiences.5658
two main purposes in quality improvement. First, develop- Among the components of successful teams are an interdisci-
ment of these services by hospitals can address currently plinary approach, strong nursing leadership, physician and
unmet needs of survivors, who usually need to discuss their nonphysician referral, rapid response to requested consulta-
own needs for information and support in order to cope with tion, around-the-clock availability, and ability to follow patients
the loss. Second, this is a time when hospitals can learn more through all care settings.12
about the effectiveness of their provision of EOL care from the From a quality improvement perspective, these teams
families perspectives, both what went well and what can be can be effective in modeling behaviors that are supportive
improved. For instance, results of a focus group of bereaved of appropriate hospital-based palliative care, but they should
family members indicated that, although the family was quite also recommend infrastructure changes as part of their
satised with pain management, breathing changes and dysp- approach to consultation. For assessment of care and pro-
nea were not anticipated and were very distressing.53 Another cesses to improve, demographic statistics about the location
institution determined from a bereavement survey that the and nature of regular consultations is needed. For instance,
institution needed to make improvements in the areas of if a particular unit or care provider has regular difculty
respecting patient privacy and dignity, family communica- managing patients with dyspnea, targeted educational
tions, emergency care, advance directives, and bereavement approaches and treatment algorithms or standardized orders
support.52 See Appendix 421 for an example of an question- may help achieve consistent and long-lasting change. Theo-
naire with which family members can evaluate the EOL care retically, a consultancy team could put itself out of business
received by their loved one. with such an approach. However, teams to date have not
After evaluation, hospitals can develop a project to improve reported the need to dissolve as an outcome of implementing
and standardize bereavement care and would be well advised system changes.
to consult with a local hospice program to collaborate on how Few studies have examined the impact of a consultation
this might occur. Instituting some very simple, standardized team on the overall care of patients at the EOL. Challenges
responses to death can vastly improve family satisfaction with have included identifying exactly which components or pro-
care. These actions might include sending a note of sympathy cesses of the team are responsible for the outcomes, perform-
or establishing some other contact from a staff member, mail- ing multimethod research (e.g., using both qualitative and
ing a list of local bereavement resources or a pamphlet, and quantitative methods) dening outcomes attributable to team
delaying the time before a hospital bill is mailed out to prevent intervention, and implementing measures that can validly and
its coinciding with funeral or memorial services. reliably capture this information.59 Establishing an evidence
base is paramount to the economic justication and reim-
Secondary and Tertiary Palliative Care bursement mechanisms for many hospitals.
As described previously, some hospitals are able to go beyond Inpatient Hospice and Palliative Care Units
minimum palliative care competency and develop additional in a General Hospital
resources to provide palliative care services. Interdisciplinary
consultation teams and units are commonly available to pro- Some hospitals, faced with the problem of providing high-
vide more specialized care. A tertiary center also focuses on quality EOL care in the acute care hospital, have found the
educating students, developing curricula, performing research development of a specialized unit to be the solution. In the
that can enhance the evidence base for palliative care, and United Kingdom, these units have been developed from preex-
serving as a role model for other programs. As described later, isting oncology units, as part of another unit, or sometimes in
the AHA has begun to collect data on the number of hospital- a separate building that is distinct but near the hospital it
based palliative care programs; however, these programs can serves.55 U.S. hospitals have varying amounts of experience
vary, from volunteer personnel focusing on palliative care, to with opening specialized units for the care of patients with
EOL, hospice, or palliative care needs.55,6062 This in-hospital o]

approach has some general benets and burdens.12 Some of Initiatives to Improve Hospital-Based Palliative Care
the benets include the following:
In 1974, the Royal Victoria Hospital in Montreal, Canada, devel-
Patients requiring palliative care have a familiar oped one of the rst initiatives in North America to improve
place to go during the exacerbations and remissions
hospital-based palliative care. They developed a palliative care
that come with progressive disease.
service to meet the needs of hospitalized patients who were
Unit staff and policies are under the control and terminally ill within the general hospital setting.63 The pallia-
nancing of experts trained as a team who are skill-
tive care service was an integral part of the Royal Victoria Hos-
ful at difcult care and communications.
pital, a 1000 bed teaching hospital afliated with McGill
Patients may get palliative care earlier if other care University, and consisted of ve complementary clinical com-
teams see the advantages of this approach and trust
ponents: (1) the PCU, (2) the home care service, (3) the con-
that patients will receive good care.
sultation team, (4) the palliative care clinic, and (5) the
Providers who monitor their patients on these units bereavement follow-up program. Members of an interdiscipli-
(if allowed) can learn valuable lessons about pallia-
nary team were involved with the care of these patients, and
tive care that can be carried forward to future
the focus was on holistic care with pain control and symptom
patients. These future patients may not require
management.63
admission to the PCU for some types of care.
These basic palliative care concepts are still not prevalent in
Some of the disadvantages of creating a distinct unit include many U.S. hospitals. However, positive changes are occurring,
the following: as evidenced by data from the AHA, which began to measure
hospital-based palliative care in 2000. Table 425 summarizes
It can prevent others from learning valuable the 20002002 AHA survey data on the growth of hospital-
palliative care techniques if the principal staff
based palliative care, hospice, and pain management pro-
are seen as specialized and are secluded in
grams.
one area.
Efforts to improve pain management64 created a founda-
Care providers may come to rely on this expertise tion for easing the pain of dying patients. However, the
instead of learning palliative care techniques them-
improvement strategies implemented in pain management
selves.
have also been applied to palliative care improvement efforts.
If unit transfer includes a transfer of doctors to a pal- The Wisconsin Resource Manual for Improvement65 and the
liative care specialist, patients and families may feel
City of Hope Pain/Palliative Care Resource Center66 are two
abandoned by their primary team in the nal hours.
examples of pain management efforts that can be expanded to
Hospice providers fear loss of the hospice philoso- incorporate hospital-based palliative care in general. The City
phy when a PCU exists in the context of the general
of Hope website (http://www.cityofhope.org/prc/, accessed
hospital.
February 1, 2005) provides articles and tools for pain manage-
Some mature palliative care programs have been able to ment, many of which also are useful for palliative care, and an
provide a trinity of services,12 including a consultancy team, an
inpatient palliative care/hospice unit, and a home care pro-
gram, all under the jurisdiction of a single hospital system. This
full-service approach can ease transitions among different lev- Table 425
els of care and has the potential to provide the optimum in Results of American Hospital Association Annual Survey of
seamless care for patients at the EOL. Such programs can serve Hospital-Based Palliative Care Programs, 20002002
as models and can set standards for other programs to aim for.
No. (%) of hospitals
A major consideration in the use of such services, regard-
with programs
less of how broadly based, is the barrier to care presented
by not recognizing that a patient is dying. Many studies now Type of
document health care providers inaccuracy in predicting Program 2000 2001 2002
prognosis.2,5,11 As a result, many patients who could benet
Hospice 1102 (22.7%) 1118 (23.6%) 1134 (23.3%)
from palliative care and hospice services are denied admission.
Pain 2052 (42.3%) 2102 (44.5%) 2256 (46.3%)
A comprehensive discussion of the reasons for inaccuracy of
management
prognosis is beyond the scope of this chapter, although it
remains a major issue that must be addressed within any insti- Palliative care 668 (13.8%) 806 (17.0%) 951 (19.5%)
tution wishing to develop specialty palliative care services. Total no. of 4856 4728 4876
Hospice programs are very familiar with such issues, and pal- respondents
liative care programs would be wise to review lessons learned
Source: American Hospital Association. Hospital statistics. Chicago: Health
in providing hospice care earlier in the disease trajectory for Forum, 2003.
patients in need.
institutional assessment of the quality of pain management.67 To assist groups in getting started, a table (Table 427)
These tools can be easily adapted to help a project team think focused on four major issues in EOL care was distributed to
more broadly about palliative care and symptoms in addition encourage organizations to compare their problems and issues
to pain.68 This section describes other examples of resources (current practice) with what were proposed as best and
for developing or improving hospital-based systems of pallia- optimum practices. The table included examples of specic,
tive care. measurable target outcomes that a group might choose to
adopt.26 The four selected areas resulted from brainstorming
by the planning group, who were all nationally recognized
Center to Advance Palliative Care leaders and clinicians in EOL care. They concluded that
the following four areas were most in need of attention and
One of the major efforts to improve hospital-based palliative
amenable to change:
care programs in the United States is led by the CAPC. Formed
and funded by a 4-year grant from the RWJ Foundation in Improving the management of pain and other
2000, the national center was established at Mount Sinai symptoms
School of Medicine in New York City. The Center, codirected Continuity of care
by Christine Cassel, MD, and Diane Meier, MD, has a mission Advance directives
to make information on how to establish high-quality pallia- Family support
tive care services available to hospitals and health systems
nationwide.69 Each institution sent a team of at least two or more members,
CAPC assists hospitals with the planning, development, representing the key disciplines implementing change in their
and implementation of hospital-based palliative care programs. organizations (e.g., nurses, physicians, chaplains, social work-
In addition to assisting hospitals and other health systems in ers, administrators) to a series of three meetings between July
program development, CAPC facilitates collaboration among 1997 and July 1998. Steps to ensure support from senior leaders
hospitals, hospices, and nursing homes; promotes educational of each organization were considered vital at the outset. Teams
initiatives in palliative care; and encourages growth and devel- were provided with large-group didactic content and written
opment of new and innovative mechanisms for nancing pal- materials. They also participated in concentrated, small-group
liative care programs.69 meetings to identify what they would do on return to their
CAPC has developed six Palliative Care Leadership Cen- institutions. Regular progress reports were sent to IHI, monthly
ters (PCLCs) to assist organizations that wish to learn the conference calls were held, and online discussions were con-
practical aspects of developing a palliative care program. The ducted to support the teams and offer advice if particular bar-
six organizations are Fairview Health Services, Minneapolis, riers or issues developed.
MN; Massey Cancer Center of Virginia Commonwealth Uni- These teams were successful in achieving many of their goals,
versity Medical Center, Richmond, VA; Medical College of from improving pain relief and dyspnea, reducing hospitaliza-
Wisconsin, Milwaukee, WI; Mount Carmel Health System, tions, and improving advance care planning, to implementing
Columbus, OH; Palliative Care Center of the Bluegrass, Lex- bereavement services. The experiences of these organizations
ington, KY; and University of California, San Francisco, CA. provide a wealth of practical advice and methods for accom-
Each represents a different type of health care system and pal- plishing quality improvement in many areas and settings of care
liative care delivery model. They serve as exemplar organiza- and are available on the IHI website (http://www.ihi.org/ihi,
tions offering site visits, hands-on training, and technical accessed February 1, 2005) and in print. Breakthrough improve-
assistance to support development of palliative care programs ments achieved by the collaborative are listed in Table 428.
nationwide. Further information regarding the PCLC can be In 2003, the IHI, together with the Center for Palliative Care
found on the CAPC website70 (http://www.capc.org, accessed Studies (CPCS), developed a new collaborative focusing on
February 1, 2005). adapting health care systems to meet the challenges of serious
chronic illness in the last phase of life. The key goal of the col-
laborative is to gather information and create a common data-
Institute for Healthcare Improvement base that will be used to help improve the dying experience for
patients and their families.71 By participating in this collabora-
In 1997, a quality improvement organization known as the tive, organizations have the ability to
Institute for Healthcare Improvement (IHI) adopted improv-
ing EOL care in hospitals and other parts of the health care Improve quality of life for people with serious
system as a major mission. As shown in Table 426, the struc- illnesses
ture of the rst IHI EOL collaborative and the results of this Decrease hospital length of stay
initiative have been published.14,26 In brief, the organization Enhance use of hospice services
provided quality improvement assistance to organizations, Meet JCAHO standards
and the resulting methods and results constitute a wide variety Build new palliative care programs
of outcomes to which almost any hospital or health care agency Learn methods to apply quality improvement to real
might aspire. problems
Table 426
Structure of the Institute for Healthcare Improvement (IHI) Collaborative: Improving Care
at the End of Life*
The Institute for Healthcare Improvement (IHI) is a Boston-based, independent, nonprot

organization working since 1991 to accelerate improvement in health care systems in the United
States, Canada, and Europe by fostering collaboration, rather than competition, among health
care organizations.
IHI provides bridges connecting people and organizations that are committed to real health
care reform and who believe they can accomplish more by working together than they can
separately.
Background
Study after study nds that patients, families, doctors, and other professionals want the same
qualities of care at the end of life: dignity, comfort, communication, and the company of loved
ones. Yet time and again we seem trapped in desperate struggles and wasted energies that help
no one. Rational, respectful care at the end of life is possible; now we need to assure it.
Participants
Since July 1997, 48 organizations from throughout the United States and Canada have been
working intensively to improve the quality of care at the end of life while also reducing
unwanted, nonbenecial care.
Overall Goals
Reduce incidence of severe pain by 25%.
Increase by 35% the number of patients who have made their wishes known about end-of-life care.
Reduce by 50% the number of patients with transfers in the last 2 weeks of life.
Areas of Focus
Collaborative teams are focusing on the following areas for improving care at the end of life:
Pain management and palliative care
Advance care planning for end of life
Optimizing transfers among care settings
Family support.
Key Changes
Successful interventions that improve care at the end of life for patients and their families
include the following:
Instituting pain and symptom management protocols.
Initiating advanced care planning discussions within 24 hours after admission and
documenting the plan in a patients chart. If this is not done, someone other than the patients
physician initiates advanced care planning within 36 hours after admission.
Increasing 24-hour access to staff, using pagers and other communication devices to decrease
hospital emergency room utilization.
Using a pull-systemone-to-one case nding in the hospital to arrange early admission of
targeted patients to palliative and hospice care.
Beginning bereavement assistance and support for the family and friends before the patient
dies.
Chair
Joanne Lynn, MD
President, Center for Improving Care of the Dying
George Washington University
Washington, DC
*For more information on IHI collaboratives, see http://www.IHI.org.

Table 427
Recommendations for Areas of Focus and Targets for Improvement in Health Care Agencies Involved in
IHI Collaborative
Proposed Targets
Current Practice Best Practice Optimum Practice (for Your Population)
Pain/Symptoms
Most often not 100% assessment on a 100% assessment of pain, 1. Ensure 100% compliance
assessed/monitored regular, recurrent basis (e.g., depression, dyspnea, and with recurrent assessment
Routinely treated with fth vital sign or item in anxiety on appropriate protocol.
predictably inadequate nursing home quarterly schedule (admission, change 2. Guarantee initial
treatment (drugs and review) in status, and periodically) assessment of serious pain
dosages) WHO/APS/AHCPR Use of all appropriate or dyspnea within 5 min in
Usually treated only after guidelines for cancer pain modalities, often on time- hospital, 15 min in nursing
established, rather than Low rate of use of opioids limited trailsincluding home or at home; initial
preventively for breakthrough pain; all opioids, biofeedback, intervention within 15 min
Gaps and delays in opioids on regular dosing hypnosis, steroids, in hospital and 1 h in
treatment are agonizing Patients or families in neuroablative procedures, nursing home or at home.
and commonplace control of dose timing stimulants, etc. Severe 3. All patients have pain <5 (of
Major symptoms are Coverage doses travel with symptoms always have an 10) in last 2 days of life (by
treatable: pain, dyspnea, patient to procedures or appropriately aggressive patient or family report).
depression, anxiety (also during transfers response 4. Reduce by 50% the number
nausea, itching, insomnia) Serious symptoms Ready availability of skilled of patients who report pain
No one held accountable considered appropriate consultants in all settings >5 (of 10) in any time period
for shortcomings for emergency response (including ICU, hospital, or episode of care.
Patients and families expect (stat page, rapid home visit, nursing home, and home). 5. All cancer patients with pain
severe symptoms calling on back-up Patient and family have >5 (of 10) are on appropriate
provider) expectations of competence, opioids, and all patients with
Performance routinely control, comfort and are pain >5 (of 10) are on
reviewed and shortcomings enabled to be active appropriate analgesics.
addressed participants in deciding and 6. All patients at risk of severe
Patients and families expect providing care dyspnea have standby
comfort Patient never left suffering plans and needed
due to relocation skills/supplies in place (also
Emergency response on advanced care planning
call for serious symptoms goal).
in any setting 7. Resource people with
Routine care review and proven skills in chronic
routine system feedback for pain management and in
quality improvement, management of
public education, and neuropsychiatric
accreditation complications of serious
illness (depression,
psychosis, delirium,
anxiety, seizures) are readily
available to every patient
regardless of setting or
insurance.
8. Eliminate times when
patient or family reports
pain as being overwhelming
or out of control.
9. Reduce prn for
breakthrough pain to less
than 20% of opioid use.
(continued )
Table 427
IHI Collaborative (continued )
Proposed Targets
10. All patients/families

understand the patients
symptoms and manage-
ment and can adjust medi-
cations within agreed range.
11. All patients with signs of
depression have a trial of
drug treatment.
12. Individual and regular
shortcomings are noted
and reviewed in Incident
Reports, M&M con-
ferences, QI committee,
and credentials review.
Continuity/Transfers
Seriously ill persons have no Hospice usually ensures People dying with cancer, 1. >50% of cancer patients are
one who stays with them continuity in all settings, advanced old age, or in hospice >4 wk and <20%
throughout. once enrolled. dementia virtually always are in hospice for <2 wk.
Transfers between settings Some nursing homes have die where they live. Services 2. >60% of those living at
are dictated mostly by developed capacity to care are mobilized to these home with established
utilization and nancing for seriously ill residents on- settings. fatal disease should die
issues for the care system, site, including a hospice-like People dying with strokes there, with good care.
not patient or family mode. and organ system failures 3. <10% of deaths have change
preferences. Some special advanced die at home (or nursing of setting in last 2 days.
Transfers among illness programs coordinate home) or in a hospital, but 4. 90% of families can name
professionals are dictated by all care out of one ofce and in either case under the care the one or two care
professionals convenience. keep one nurse/social of those who know them providers who (together)
Most patients change worker/physician in charge and with appropriate were constant over the
settings and/or caregivers of care throughout. services. period when their family
multiple times in the last Some programs have Utilization-induced transfer member was very ill.
few weeks of life. coordinated records almost never happens in the 5. >80% of those living in
The fact and the expectation available at all sites last 2 days of life. nursing homes die there,
of discontinuity precludes electronically, or have the Switching key personnel with good care.
intimacy, empathy, promise- patient carry the record, while a patient is in any one 6. >80% of dying persons who
making, and trust. or both. setting is uncommon, have available an integrated
Many transfers lose settled Some nursing home or viewed as unfortunate, and care system get all services
care plans, treatment home care agencies have the subject of careful from that system.
schedules, and arranged for special direct planning to support patient 7. >50% of deaths from CHF,
understandings. hospital or hospice and family. COPD, cirrhosis, and
Frequent transfers mean admission to avoid trauma Patients dying in ICU, ER, stroke have >4 wk in
that no one is held in ambulances and ERs. or busy ward settings have hospice or another special
accountable for the overall Some states and regions more family-attentive end-of-life program.
courseor even for there have developed accord on settings available for 8. Serious errors in transfer
being a standard for a good orders that reshape EMS temporary use. yield adverse events for all
course. services . participants: review, pay-
Transfer to hospice or ment penalty, QI efforts.
nursing home is especially 9. DNR orders established in
discontinuous, and transfer one setting are always
by EMS is routinely transferred to another
maximally (and conrmed when
life-extending. appropriate).
(continued )
Table 427
Proposed Targets
10. <10% of deaths have change

of physician in last 2 days.
11. Written oral care plan
moves with or ahead of
patient for every change of
care setting.
12. 90% of families feel that
they know who is in
charge and how to reach
that person at all times.
Advanced Care Planning

Very little attention is paid Regularly offering formal Likely course, including 1. CPR is attempted at death
to overall future course written planning urgent complications and for <3% of patients who
not discussed, articulated, or opportunities (e.g., Vermont major decision points, is are known to be in the
planned for. Ethics Network form) articulated for all last phase of life.
Most people are not even Area-wide advance planning chronically ill patients. 2. Decrease unplanned
asked to name a surrogate, Emergency kit of drugs and Last phase of life is noted, admissions by 50%.
even when who that would other paraphernalia at negotiated, and shared 3. A written care plan
be is quite unclear. home, appropriate to family among providers, patient documents priorities and
Among persons who have training and professional and familyfor >80% of plans for >80% of patients
very little chance of availability dying patients. in last phase of life.
surviving CPR and Emergency response team to Plans are written and 4. An appropriate surrogate
substantial chance of go to home for pain, discussed for likely urgent is known (and
cardiopulmonary arrest, few dyspnea, seizures, family complications and for documented if necessary)
have discussions about crisis, etc. prolonged incompetence for for 80% of those in the
DNR, even when put at Formatted advance every last phase of life. last phase of life.
special risk by being in planning discussions Plans made in one setting or 5. 90% of those who die in
hospital. by one set of providers the system, of chronic
Most legal advance directives working with patient and disease, are identied as
are too nonspecic, family are honored and dying 2 months earlier,
unavailable, or inapplicable conrmed, as appropriate, and 50% are identied 1
to direct care, yet patients throughout the care system. year earlier.
think they have solved their Plans for urgent compli- 6. Patients and families are
problems by lling them cations are translated into aware of eventual fatal
out. specic service needs (e.g., nature of disease for >75%
Almost no care planning drugs, oxygen), and these of those so identied.
deals with the specic drugs, are put in place in the 7. >80% of patients and fam-
skills, or procedures needed appropriate settings. ilies know what to do for
to allow the patients CPR is allowed with strong worsening pain, dyspnea,
preferences to be effected. patient/family preference or cardiac arrest and know
Some specic documented but is very rare. the signs of impending
patient preferences are Patients and families are not death and what to do.
thoughtlessly abrogated. browbeaten into 8. Plans for after death (who
acquiescence with caregivers, should come to share
nor are they brutalized by that time, funeral, burial,
having to review painful family support) are made
decisions too often. and documented for >50%.
9. ER and 911 use declines by
50% in targeted population.
(continued )
Table 427
Proposed Targets
10. 80% of last phase of life

patients at home have
plans documented to
shape 911/EMS response.
Support of Family and of Meaningfulness

Families are excluded or Care in hospice routinely Center the experience in 1. >90% of families report
ignored, granted only the includes family and spiritual terms of spirituality and they would want to be
role of veto in care concerns. meaning, rather than cared for in this way if
planning. Hospice and home care medical and physiologic they were similarly sick.
Families do not know agencies sometimes provide issues. 2. >90% of families report
prognosis, uncertainties, brochures and counseling Make human relationships they cannot recall when
desirable timing of about what to expect and and spiritual issues the they were kept in the
behaviors, who to turn to how one might respond. central concern, with dark, an uncaring remark
for counsel, or what is Hospice and some professional caregiver habits from a caregiver, or a put
reasonably expected individual programs always subservient. down of their beliefs,
of them. routinely follow families in Use episodes of serious practices, or views.
Many opportunities to bereavement, providing or illness as dress rehearsals 3. All bereaved families get at
complete relationship referring to services as for eventual death. least one follow-up call
(human or transcendent) appropriate. Create rituals that mark from a doctor or nurse who
are not taken. Some care providers insist stages and ensure can answer medical
Many patients or families do on enabling family cohesion reassurance. questions and check for
not have opportunity to and rearrangement, spiritual Always follow up with dysfunctional grief.
attend to religious/spiritual search for meaning, familyexplain, reassure, 4. Double the rate at which
issues or meaningful rituals. and culturally meaningful counsel. patients and families agree
Most families have no rituals. Learn how to provide care that the last few weeks or
follow-up in bereavement. Some care settings help that is death accepting/ months were especially
Many dissatised or guilt- patients and families enhancing, life-prolonging, meaningful.
ridden families are never rehearse for dying by and physiology-restoring. 5. For chronic organ system
heard, and some have lives practicing leave-taking and failure, develop a care
blighted by their experience. imagining the time after. pattern in which 80% of
Families and patients have staff and 80% of patients/
little practice at leave- families feel that staff are
taking. pleased and supportive of
survival (in an exacerbation)
and also supportive of a
good dying.
6. >90% of families report
that their loved one was
given tender care, the
familys emotional state
was noticed and responded
to, and the caregiver said
or did something especially
meaningful.
APS, American Pain Society; AHCPR, Agency for Health Care Policy and Research; CHF, congestive heart failure; COPD, chronic obstructive pulmonary disease;
CPR, cardiopulmonary resuscitation; DNR, do not resuscitate; EMS, emergency medical services; ER, emergency room; ICU, intensive care unit; IHI, Institute for
Healthcare Improvement; M&M, morbidity and mortality; QI, quality improvement; WHO, World Health Organization.
Source: Lynn et al. (1997), reference 8. Used with permission of J. Lynn, MD, IHI chair.
wide improvement strategies: an inuential champion at the

Table 428 highest level of the organization and a mandate for organiz-
Breakthrough Improvements Achieved in Past CPCS-Led
ational commitment to this activity. The charge document
Collaboratives
offered a variety of suggestions for system improvement: mak-
60% reduction in patients with pain greater than 5 on a ing pain more visible by enhancing current measurement and
10-point scale reporting methods (using the Fifth Vital Sign approach in all
50% or greater decrease in exacerbations in heart or patient contacts in the system); increasing access to pain ther-
lung failure apy and increasing professional education about pain; adopt-
90% or greater rates of documented discussion and ing the Agency for Health Care Policy and Research and
planning in advance of emergency or incompetence American Pain Society guidelines for pain management; pur-
Substantial increases in hospice length of stay suing research on pain therapies for veterans; distributing and
Substantial decline in use of articial feeding in advanced
sharing pain management protocols via a central clearing-
dementia
house; and exploring methods to maintain cost-effective pain
CPCS, Center for Palliative Care Studies. therapy.
Source: Washington Home Center for Palliative Care Studies. National Also in 1997, the VA incorporated a palliative care measure
Medicaring Quality Improvement Collaborative. Available at: http://www
in the performance criteria of its regional directors. In this
.medicaring.org/nc2004/index.html (accessed February 1, 2005).
program, performance of the directors is evaluated based on
the number of charts that contain information about veterans
preferences regarding various palliative care indicators.73
In 1998, the RWJ Foundation Last Acts program created
These two breakthrough series collaboratives have pro- a Clinical Palliative Care Faculty leadership program and
vided resources to hospitals interested in improving EOL awarded a 2-year grant to promote development of 30 faculty
care. By participating in the latest collaborative, organizations fellows from VA-afliated internal medicine training pro-
can expect participation in team learning sessions on improv- grams. Their goal was to develop curricula to train residents in
ing the quality of care for serious illnesses, telephone and e- the care of dying patients, to integrate relevant content into
mail consultation and feedback from collaborative faculty, the curricula of residency training programs, and to add inter-
and involvement in the improvement process, keeping up nal medicine faculty leaders and innovators to the eld of pal-
with best practices, and mobilizing support for needed liative medicine.
changes.71 In 2001, the VA Hospice and Palliative Care initiative began.
This was a two-phase initiative to improve EOL care for veter-
Veterans Health Administration Initiatives ans. Phase 1 of the project was funded in part by the National
Hospice and Palliative Care Organization (NHPCO) and the
The U.S. Department of Veterans Affairs (VA) health care sys- Center for Advanced Illness Coordinated Care. This phase of
tem has shown leadership in improving EOL care in their the initiative was designed to accelerate access to hospice and
hospitals through multiple initiatives that have been designed palliative care for veterans. A major product of the program
or implemented since the early 1990s. In 1992, Secretary Jesse was the Hospice-Veteran Partnership Toolkit. It also created
Brown mandated that VA medical centers (VAMCs) establish 2.5 full-time equivalent employee positions in Geriatrics and
hospice consultation teams to respond to the complex pallia- Extended Care, to be used for hospice and palliative care pres-
tive care needs of patients with advanced disease. The VA ence in the VA system.
provided training for team members during 1992 and 1993. In 2004, phase 2 of the project was launched. It was funded
One team reported success in pain and cost reduction while in part by Rallying Points and the NHPCO. It builds on the
also undertaking significant institution-wide improvements success of phase 1 and aspires to develop a Hospice-Veterans
through education of nurses and house staff and making pain Administration Partnership in every state and to build an endur-
management resources available.72 ing infrastructure for the Accelerated Administrative and Clin-
In 1997, the Veterans Health Administration began an inten- ical Training Program. In a statement made in 2002 regarding
sive, system-wide, continuous quality improvement (CQI) ini- the VA national initiatives, the VA made a clear commitment
tiative to improve pain management. This endeavor resulted to improving hospice and palliative care for their patients. The
from a 1997 survey that found both acute and chronic pain Geriatrics and Long Term Care strategic plan is as follows74:
management services to be inconsistent, inaccessible, and All VAMCs will be required to have designated inpatient beds
nonuniform throughout the system. Two major thrusts for hospice and palliative care, or access to these services in the
formed the basis of the initiative: issuing a system-wide community, and an active hospice and palliative care team for
mandate and forming a permanent National Pain Advisory consult, care and placement. Together these initiatives address
Committee to provide direction and encouragement to the the need for improvement on multiple fronts and create a
development of the program. Thus, this initiative incorpo- momentum in the VA system that can set an example for other
rated two essential elements found in all successful system- large hospital-based systems of care.
United Hospital Funds Hospital Palliative

Table 429
Care Initiative
The United Hospital FundBuilding Hospital Palliative
Care Programs: Lessons from the Field
The multiyear, multihospital research and demonstration initia-
tive of the United Hospital Fund (UHF) sought to improve the Lessons learned from ve-hospital palliative care initiatives:
quality of hospital care for persons at the EOL. In the rst phase There is no one successful model of palliative care services.
of the initiative, 12 hospitals received grants to analyze the insti- Initiating palliative care services is extraordinarily
tutional, professional, scal, and regulatory forces shaping EOL demanding of staff time and other resources.
care. In the second phase, 2-year program grants were awarded to A key decision is how much authority the palliative care
the following ve New York City hospitals to seek specic goals: team will have to implement its recommendations after the
initial referral.
1. Beth Israel Medical CenterTo develop an array of Initial resistance among senior primary care physicians
new palliative care service delivery and education should not be underestimated.
activities, including the creation of a new position, Palliative care teams may make most of their contributions
by establishing goals of care, addressing family needs, and
medical director for palliative care.
resolving conicts.
2. The Brooklyn Hospital CenterTo create a new
Key departments and their directors must be included early
position of palliative care expert, with responsibility in the planning process.
and authority to facilitate the coordinated delivery It is important to trace the impact on overall hospital and
of palliative care services to a select group of functioning.
patients and their families. Discharge planning is key to a successful palliative care
3. Monteore Medical CenterTo evaluate and effort.
improve physician practice patterns concerning Palliative care services in hospitals are costly and resource
EOL care by using evaluative feedback for a 1-year demanding.
period, focused on ve areas of EOL care.
Next Steps:
4. The Mount Sinai Medical CenterTo create a com-
prehensive new supportive care service to provide Reach patients earlier in course of illness through the
Community Oriented Palliative Care Initiative
coordinated palliative care services across a range
Introduction of palliative care in combination with life-
of settings. prolonging care
5. Saint Vincents Hospital and Medical CenterTo cre- Provide wider range of services to patients and families
ate a new palliative care consulting team to build on Decrease the inappropriate use of palliative care service
the existing outpatient supportive care service and
expand them to include physician and psychiatric Source: Hopper SS. Building Hospital Programs: Lessons from the Field.
A Special Report. New York, United Hospital Fund of New York, 2001.
expertise for a select group of patients and their fami-
lies in both the inpatient and outpatient settings.
Although not all of these organizations are specically using
quality improvement methods, the outcomes and products to quality of care provided to the public. JCAHO is an indepen-
improve palliative care that evolved from these projects can dent, not-for-prot organization, and perhaps its most impor-
inform other hospitals wishing to replicate their successes.75 tant benet is that JCAHO-accredited organizations make a
Since the implementation of the ve programs, the UHF has commitment to continuous improvement in patient care.
produced a special report, Building Hospital Palliative Care Pro- During an accreditation survey, the JCAHO evaluates a groups
grams: Lessons from the Field. This report can be obtained from performance by using a set of standards that cross eight func-
the UHF website (http://www.uhfnyc.org/, accessed February 1, tional areas76: (1) rights, responsibilities, and ethics; (2) contin-
2005) or by calling the organization directly. A major outcome uum of care; (3) education and communication; (4) health
of the initiative was recognition by all involved of the complex- promotion and disease prevention; (5) leadership; (6) man-
ity and obstacles to integrating palliative care into hospital sys- agement of human resources; (7) management of informa-
tems. Table 429 lists the lessons learned from the ve-hospital tion; (8) improving network performance.
palliative care initiatives and the suggestions for hospitals that In 2004, a specic palliative care focus was introduced within
are creating palliative care programs in the future. two standards: (1) rights, responsibilities, and ethics and (2) the
provision of care, treatment, and services. The goal of the
ethics, rights, and responsibilities standard is to improve out-
The Joint Commission on Accreditation comes by recognizing and respecting the rights of each patient
of Healthcare Organizations and working in an ethical manner. Care, treatment, and services
are to be provided in a way that respects the person and fosters
The JCAHO is one of the paramount accreditation organiza- dignity. The performance standard states that a patients fam-
tions for hospitals and other health care organizations. The ily should be involved in the care, treatment, and services if the
purpose of JCAHO is to continuously improve the safety and patient desires. Care, treatment, and services are provided
through ongoing assessments of care; meeting the patients Although there is a bias against hospital death, because
needs; and either successfully discharging the patient or pro- hospital care is associated with high-technology interventions,
viding referral or transfer of the patient for continuing there are times when dying in the hospital allows for a more
care.77,78 More detailed information is available by contacting comfortable death than at home. In any case, valid reimbursed
JCAHO or visiting their website at http://www.jcaho.org hospital admissions for palliative care may be difcult to
(accessed February 1, 2005). obtain within the current DRG codes. In the best case, the pal-
The revisions of these standards in 2003 and 2004 incorpo- liative care DRG would remedy this. However, some oppose
rated a stronger emphasis on palliative care practices within the creation of a new DRG, because the assignment of the code
hospitals. Hence, organizations are being held accountable for may only describe what is currently being done, which may
the manner in which they provide appropriate palliative care. not be adequate and hence may not reect what state-of-the-
It is in the publics best interest that JCAHO requires organi- art palliative care could achieve.
zations to adhere to these provisions for a successful accredita- Managed care can inuence the quality of EOL care in
tion. The implementation of specic EOL standards has hospitals in both positive and negative ways. Patients in a
reinforced the directive that pain and EOL issues must be managed care plan need approvals and are carefully observed
addressed and health care institutions should strive to maxi- so that they do not spend unnecessary days in the hospital.
mize performance activities that affect the quality of patient This approach can be quite restrictive when extra planning
care in this population. time to ensure patient comfort is restricted. On the other
hand, several features of managed care make it a potentially
positive force for improvement.81 Anthem Blue Cross and
o] Blue Shield of New Hampshire has implemented an innova-
Economic Issues of Hospital-Based Palliative Care tive Advanced Disease Care Management approach. In
response to identied needs of members, the director of med-
The use of the diagnosis-related group (DRG) system has ical management and the clinical quality improvement coor-
played a major role in the current provision of hospital-based dinator (both nurses) redesigned the plans hospice benet.82
care. The prospective payment system of Medicare was one of Excerpts from the provider/member educational brochure
the rst economic stimuli that began to shift EOL care out describing their program are shown in Table 4210. Standards
of hospitals. Simultaneously, the Medicare hospice benet of pain and hospice care were sent to all providers, and a
was instituted, which recongured nancing for hospice care monitoring system was implemented to ensure adherence
(described earlier) and reimbursed some home care, acute and to provide for review of situations that were outside the
care, and specialized units in nursing homes.15 scope of the guidelines. This use of quality improvement
The Health Care Financing Administration (HCFA) uses methodology outside the hospital to simplify care and hold
DRG codes to dene Medicare reimbursement, although at providers and insurers accountable for a predetermined stan-
present limited mechanisms exist to obtain reimbursement for dard of EOL care proved successful. The approach ultimately
various types of palliative care in hospitals under Medicare. In beneted plan members by increasing access to appropriate
response to this limitation, in October 1996 a trial of using the levels of palliative care (including hospital-based care, when
v code 66.7 was initiated as a mechanism to collect data about appropriate).
palliative care being provided in hospitals.79 At present, this Another effort to evaluate how health plans and systems
code does not elicit reimbursement but allows for data to be provide EOL care consists of a strategy to measure and
collected about the current nature of palliative care. compare outcomes across organizations. Funded by the
Clinicians and administrators may see development of pal- RWJ Foundation in 1997, the Foundation for Accountability
liative care services as a way to save money as less invasive pro- (FACCT) assembled an expert panel of EOL clinicians, qual-
cedures and tests are recommended, compared with more ity improvement specialists, research scientists, and health
expensive curative care. An evaluation of a high-volume spe- plan administrators and held focus groups of high-risk
cialty unit and team was able to demonstrate cost savings via patients to develop a strategy to measure the quality of EOL
cost avoidance in one center. Smith and colleagues80 evaluated care in health plans. The intent was to allow for com-
237 patients housed on the PCU compared with 38 contempo- parisons of plan performance and to help health plans set
rary control patients treated elsewhere in the hospital and goals for quality improvement activities at the EOL.83 The
determined that PCU patient charges were 59% lower, direct report summarizes distinctions between measures for public
costs 56% lower, and total costs 7% lower. In this case, provid- accountability and quality improvement, consumer opinion
ing less unwanted care resulted in fewer ICU stays and fewer about what is important at the EOL, and important measures
costly, invasive procedures. However palliative care experts and reporting categories for capturing plan performance in
suggest that programs often rationalize the use of hospital eight areas of care within three major categories: steps to
resources in a way that respects patients preferences for care. good care, results of care, and experience and satisfaction
In program development, nancial riskbenet analysis is with care. In addition, practical advice about the measure-
critical; through CAPC and other resources, tools to assist hos- ment process and additional areas of needed research are
pitals wishing to perform such analyses are available.37 described.83
patients received better care in these specialized units that also

Table 4210 proved to be cost-effective. This example provides a strong
Anthem Blue Cross and Blue Shield (ABCBS) of
case for dedicating specic hospital units and teams to the pal-
New Hampshire Guide to Pain and Symptom Management
liative care population.80
in Advanced Disease
Sometimes a disadvantage can really be an advantage. For
Goal example, the perceived endless paperwork, rigidity, and regu-
To reach out to the member early in the disease process lations common to hospitals may be among the biggest advan-
so that needs can be anticipated and addressed before a tages to making improvements in hospital-based EOL care.
crisis occurs. Extensive and readily accessible databases of variables that
Assist members in getting the critical care they need when reect the quality of EOL care are available and are the positive
they are most vulnerable side of monumental documentation requirements. Because of
Offer Advanced Disease Care Management as one of the this accessibility, the study of the quality of EOL care in hospi-
proactive Care Management initiatives
tals and some areas of quality improvement have been brought
Nurse Care Managers have specialized education and
experience to apply knowledge of ABCBS benets and
to light relatively rapidly, plans for change have been imple-
community resources when working with unique care mented, and results have been monitored. In the context of
needs of members, their families, and providers coping hospital oversight and regulation, medical professionals have
with end-of-life issues much more control over hospital operations than can ever be
expected in the community or home. Improvement of pain
Program Components relief and palliative care in hospitals is likely to experience a
Early participationkey to developing a meaningful and boon under current JCAHO standards.
trusting relationship between the member and care team One of the recommendations of the Institute of Medicine
Participation is appropriate when member is diagnosed is that all future health care providers and all current practi-
with a potentially life-limiting illness: advanced disease,
tioners must receive EOL care education.2 Numerous efforts
progression is inevitable, function is compromised, and
are being put forth by the medical and nursing communities
prolonged survival is questionable.
Appropriate conditions and diseases for the Advanced to provide EOL care and palliative care education for practic-
Disease Care Management program include advanced ing and future nurses and physicians, some of which were dis-
cancer, end-stage cardiac disease, renal failure, lung or liver cussed in detail earlier in this chapter. Also, the ANCC, in
disease with no option for transplantation, and advanced conjunction with the National Board for Certication of Hos-
neurological disease. pice and Palliative Nurses (NBCHPN) and support from New
Oversight by specialized palliative care ABCBS care York University, has developed the rst advanced practice
manager nursing certication in the specialty of palliative care.47 How-
Screen for compliance with accepted pain and palliative ever, all health care professionals need to possess a minimum
treatment guidelines level of palliative care knowledge in order to provide the most
effective primary palliative care to patients and their families.
The good news is that there is a growing foundation of
resources to assist the clinician or team wishing to apply a
o] quality improvement process to hospital-based EOL care.
Future Directions However, such abundance may overwhelm the beginning cli-
nician, quality improvement personnel, or project team. A
The rst and biggest step in improving hospital-based pallia- mantra from an unknown source on the cover of one quality
tive care is to reduce the number of unnecessary acute care in- improvement manual65 lends heartWe cannot do every-
hospital deaths. Because death in hospitals will never be thing at once, but we must do something at once. A few key
completely eliminated, the second biggest improvement will sources provided throughout the chapter describe quality
come as a result of improved communication among the improvement projects, groups, and contacts. Palliative care as
health team, patient, and family. Strategies can be put into a developing specialty lacks an adequate evidence base.84 How-
place to identify the goals of hospital care and implement a ever, as more research ndings become available, the rapid-
prompt, effective, holistic plan to meet predetermined values cycle improvement infrastructure is one way to quickly test
and preferences. and translate ndings into clinical practice. Although funding
A number of features of hospitals actually make it easier to mechanisms exist for research, fewer funding opportunities
employ successful full-scale improvements, including the exist for quality improvement.
amount of readily available data and regulatory efforts such as Quality improvement in hospitals has the potential to pro-
those of the JCAHO. Innovations such as palliative care con- vide a signicant foundation on which to build a larger health
sultation teams, services, units, and pathways have already care system and culture of humane care at the EOL. Dr. Christine
begun to provide successful models for improvement. A recent Cassel provides a simple guideline for success in the preface to
study comparing the cost and quality of care for terminally ill the National Academy of Sciences Institute of Medicine report
patients in PCUs versus regular hospital settings found that entitled Approaching Death: Improving Care at the End of Life 2:
When medicine can no longer promise an extension of 14. Lynn J, Schuster JL. Improving Care for the End of Life: A
life, people should not fear that their dying will be Sourcebook for Health Care Managers and Clinicians. New
marked by neglect, care inconsistent with their wishes, or York: Oxford University Press, 2000.
preventable pain and other distress. They should be able 15. Castle NG, Mor V, Banaszak-Holl J. Special care hospice units in
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tive, and humane care giving. If we can fulll that expec-
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tation, then public trust will be strengthened. (p. vii)
17. Department of Health and Human Services Centers for Medicare
and Medicaid Services. Program Memorandum Intermediaries
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49. Stair J. Oncology critical pathways. Palliative care: A model 2005).
example from the Moses Cone Health System. Oncology 1998; 71. Lynn J, Schuster JL. Improving Care for the End of Life: A
14(2):2630. Sourcebook for Health Care Managers and Clinicians. New
50. Du Pen S, Du Pen AR, Polissar N, Hansberry J, Kraybill BM, York: Oxford University Press, 2000.
Stillman M, Panke J, Everly R, Syrjala K. Implementing guide- 72. Abrahm JL, Callahan J, Rossetti K, Pierre L. The impact of a hos-
lines for cancer pain management: Results of a randomized con- pice consultation team on the care of veterans with advanced
trolled clinical trial. J Clin Oncol 1999;17:361370. cancer. J Pain Symptom Manage 1996;12:2331.
51. Kelly B, Edwards P, Synott R, Neil C, Baillie R, Battistutta D. Pre- 73. Hume M. Improving care at the end-of-life. Qual Lett Healthc
dictors of bereavement outcomes for family carers of cancer Lead 1998;10(10):210.
patients. Psycho-oncology 1999;8:237249. 74. U.S. Department of Veterans Affairs. Creating and expanding
52. Bilings JA, Kolton E. Family satisfaction and bereavement care hospice and palliative care programs in VA. 2004. Available at: www
following death in the hospital. J Palliat Med 1999;2:3349. .va.gov/oaa/p/ (accessed February 1, 2005).
75. The Challenge of Caring for Patients Near the End of Life: Find- 80. Smith TJ, Coyne P, Cassel B, Penberthy L, Hopson A, Hager MA. A
ings from the Hospital Palliative Care Initiative Paper Series. high-volume specialist palliative care unit and team may reduce
Edison, NJ: United Hospital Fund, 1998. in-hospital end-of-life care costs. J Palliat Med 2003;6: 699705.
76. Joint Commission on Accreditation of Healthcare Organiza- 81. Solomon M, Romer A, Sellers D. Meeting the Challenge: Improv-
tions. Joint Commission on Accreditation of Healthcare Organi- ing End-of-Life Care in Managed CareAccess, Accountability,
zations Standards for Hospitals, 2004. Available at: http:// www and Cost. Newton, MA: Robert Wood Johnson Foundation,
.jcaho.org. 1999.
77. Joint Commission on Accreditation of Healthcare Organiza- 82. Montan J, Duffy M. NH Blue Cross Blue Shield Report: Insurers
tions. Provision of Care Standards 06/2003 2003. Redesign Hospice Benet to Improve EOL Care. Tucson, Ariz.:
78. Joint Commission on Accreditation of Healthcare Organiza- Anthem Blue Cross and Blue Shield of New Hampshire, 1999.
tions. Ethics, Rights, and Responsibilities Standard R1.2.80, 2003. 83. Yurk R, Lansky D, Bethell C. Care at the End of Life: Assessing
Available at: http://www.jcaho.org. the Quality of Care for Patients and Families. Portland, OR:
79. Capello CF, Meier DE, Cassell CK. Payment code for hospital- FACCTThe Foundation for Accountability, 1999.
based palliative care: Help or hindrance? J Palliat Med 1998;1: 84. Robbins M. Evaluating Palliative Care: Establishing the Evidence
155160. Base. Oxford: Oxford University Press, 1998.
814 o] a p p e n d i x 4 2 1
Dartmouth-Hitchcock Medical Center Care at the End of Life Questionnaire
815
43o] Kathleen Puntillo and Daphne Stannard
The Intensive Care Unit

I think Im having a more difcult time than [the patient], because I can see whats going on. I dont
know if [the patient] is totally aware of whats going on.Family member of a critically ill patient1
Key Points An intensive care unit (ICU) is, by tradition, the setting in
Although an intensive care unit is rarely the place where patients which the most aggressive care is rendered to hospitalized
would choose to die, transition from aggressive to end-of-life care is patients. Patients are admitted to an ICU so that health pro-
a frequent occurrence. fessionals can perform minute-to-minute titration of care.
Optimal transitional care in ICUs requires clear communication The primary goals of this aggressive care are patient resusci-
among patients, family members, and care providers from tation, stabilization, and recovery from the acute phase of an
multiple disciplines. illness or injury. However, many patients die in ICUs. It is
At the end of life, the appropriateness of procedures should be assessed, estimated that 540,000 people die after admission to ICUs in
unnecessary procedures eliminated, and the pain associated with the United States each year.2 Stated otherwise, almost one in
necessary procedures treated appropriately. five Americans receives ICU services before death. ICU deaths
Analgesics should be administered to dying patients in the amounts account for 59% of all hospital deaths and 80% of all termi-
necessary to decrease pain and symptoms without concern about nal inpatient costs. One third of patients with metastatic
the milligram dose required. cancer who die in hospitals do so in ICUs, as do 85% of
Pain and symptom assessment and management, although patients with acute myocardial infarctions. Therefore, it is
challenging in an ICU setting, are primary roles and contributions clear that management of the process of dying is common
of the ICU nurse. in ICUs.3
Decisions to forgo life-sustaining therapies are made when the In the high-technology environment of an ICU, it may be
burden of aggressive treatment clearly outweighs the benets. There difficult for health professionals and families of dying
are two methods of withdrawing ventilator therapy: immediate patients to acknowledge that there are limits to the effective-
extubation and terminal weaning. Guidelines exist for each of these ness of medical care. However, it is important to focus on
methods of withdrawal. providing the type of care that is appropriate for the individ-
Caring for families at any point along the dying trajectory ual patient and the patients family, be it aggressive life-
encompasses three major aspects: access, information and support, saving care or palliative end-of-life care. This chapter
and involvement in caregiving activities. discusses the provision of palliative care in ICUs. Specifically,
challenges and barriers to providing such care in ICUs are
described, and recommendations are offered for the provi-
sion of symptom assessment and management. Current
issues related to withholding and withdrawing life-sustaining
therapies are covered. Recommendations are offered for
attending to the needs of families as well as health care
providers who care for ICU patients at the end of life. Finally,
an international agenda for improving end-of-life care in
ICUs is presented.
817
o] the trauma and adjust to the possibility of death. On the other

The Limitations of End-of-Life Care hand, when death is prolonged, family frustration and fatigue
in Intensive Care Units may be part of their experience. Health professionals who are
sensitive to these different experiences can individualize their
Although many deaths occur in ICUs, an ICU is rarely the place approaches and interventions for family members.
that one would choose to die.4 Health professionals in ICUs, However, this transition from aggressive care to death prepa-
frequently uncertain about whether a patient will live or die, ration has not been well operationalized. Children who die in
are caught between the opposing goals of preserving life and ICUs often do so after physician determination that death is
preparing the patient and family for death. It is important for imminent and after care has been restricted.8 The restrictions
professionals to realize that a patients death is not necessarily are usually equally divided among withholding resuscitation,
an indication of ineffective care. Yet, there are serious limita- limiting medical interventions in addition to withholding resus-
tions to the care provided to seriously ill and dying patients citation, and withdrawing medical interventions.8,9 In a retro-
and their families. Communication between physicians and spective study of 300 pediatric patient deaths, the most common
patients may be poor; physicians often may not implement mode of death was active withdrawal of support.10 Usually,
patients refusals of interventions; patients may be overly opti- physicians raise the issue of restricting care (76% of the time),
mistic about the outcomes of cardiopulmonary resuscitation but sometimes it is the family that initiates these discussions
(CPR); and many hospitalized patients die in moderate to (16% of the time).8 The unique interdependence between a
severe pain and with other troubling symptoms.5,6 child and family makes it essential and justiable for the fam-
In a landmark study, more than 5,000 seriously ill hospital- ily to participate in treatment-related decisions11 during the
ized patients or their family members were asked questions transition period and throughout the dying process.
about the patients pain.7 Almost one-half of these patients The transition period is clearly uncomfortable for many
had had pain during the previous 3 days, and almost 15% had health care professionals. In fact, when scenarios concerning
had pain that was moderately or extremely severe and occurred end-of-life decision-making in the absence of patient or fam-
at least half of the time. Of those with pain, 15% were dissatis- ily input were presented to more than 1,300 ICU staff, respon-
ed with its control. Other distressing symptoms, such as dents were very condent of their choices less than 30% of the
fatigue, dyspnea, and dysphoria, have been reported by seri- time.12 Physicians were more condent than nurses, who were
ously ill and elderly hospitalized patients and their family more condent than house staff. Although some guidelines
members.6 Although patients with colon cancer had the most exist to assist ICU professionals through the processes of main-
pain, many of the patients reporting pain had diagnoses that taining, limiting, or stopping life-sustaining treatments,13 there
were not surgery or cancer related (e.g., chronic obstructive are no well-tested standards to assist in the decision-making
pulmonary disease, congestive heart failure). These ndings process. It is important, therefore, for ICU professionals to
stress the importance of attending to the assessment and man- consider the following steps when caring for patients at risk
agement of pain and other symptoms in all ICU patients. for not surviving their ICU course:
1. Identify and communicate the goals of care for the

o] patient at least once a day. Ascertain whether the
Planning Palliative Care for ICU Patients patient has developed an advance directive, whether
a family member has durable power of attorney, and
Providing comfort to patients should accompany all ICU care, whether the patient has communicated a preference
even during aggressive attempts to prolong life. However, if a about CPR. Almost half of 960 seriously ill patients
patient is not expected to survive, the focus shifts to an empha- who wanted CPR withheld did not have a do-not-
sis on palliative care. It is often extremely difcult in an ICU to resuscitate (DNR) order written during their hospi-
determine the appropriate time for a change of focus in care. A talization, and almost one third died before
transition period occurs during which the health profession- discharge.5
als, the patients family, and sometimes the patient recognize 2. Outline the steps that need to be taken to accom-
the appropriateness of withdrawing and/or withholding treat- plish the goals of care and evaluate their effective-
ments and begin to make preparations for death. The transi- ness. Technology should not drive the goals of
tion period (i.e., the time from decision to death) may be a care. Instead, technology should be used when
matter of minutes or hours, as in the case of a patient who has necessary to accomplish the goals, and its use
sustained massive motor vehicle injuries; or it may be a matter should be minimized when the primary goal is
of weeks, as in the case of a patient who has undergone bone achievement of a peaceful death.
marrow transplantation and has multiple negative sequelae 3. Use a multidisciplinary team approach to decision-
while in the ICU. Clearly, this time difference must be recog- making regarding transition to end-of-life care. All
nized as a factor that can inuence the experience of a patients team members, including the patients family,
family members. When patients rapidly approach death, their should reach a consensus, sometimes through
family members may not have time to overcome the shock of negotiation, that the withdrawal of life support and
The Intensive Care Unit 819
a peaceful death are the appropriate patient out- of the anesthetic agent propofol or of neuromuscular blocking
comes.14 agents (NMBAs) such as vecuronium may limit or entirely
4. Develop and communicate to professionals and mask the patients ability to express or show any behavioral
family the palliative care plan, and identify the best signs of pain. It is essential that clinicians understand that
persons for implementing the various actions in the propofol and NMBAs have no analgesic properties, even
plan. End-of-life treatment decisions are particu- though visible signs of pain disappear during their use. If these
larly complex when the dying patient is an infant or agents are used, they must be accompanied by infusions of
child.13 De Groot-Bollujt and Mourik15 provided analgesics, sedatives, or both. In these situations, the nurse
specic suggestions for involving a childs family may enlist the assistance of family members or friends in their
members in the dying process. These included offer- evaluation of the patients discomfort. The nurse can ask them
ing family members opportunities to participate in about any chronic pain experienced by the patient or methods
preparing the child to die and even holding the used by the patient at home to decrease pain or stress. This
child during the dying process. information can then be incorporated into the patients care
5. Developing a plan of care may include enlisting the plan.
assistance of in-hospital palliative care staff and/or If patients are unable to self-report, the nurse can use a
hospice services. If feasible and desired by the structured, systematic method of pain assessment that includes
family, consideration should be given to transfer observation of behavioral and physiological signs of pain. A
of the adult or pediatric patient from the ICU to in- pain assessment reference guide is one example of a bedside
hospital support care services, such as those at instrument that can assist professionals to perform a multidi-
Detroit Receiving Hospital.16 Or, if possible and mensional pain assessment.21 A behavioral pain scale (BPS)
desired, patients may be transferred to the home or has been developed that quanties pain in sedated, mechani-
to community hospice services. A major focus in cally ventilated patients.22 However, further work is necessary
any palliative care plan is on providing optimal to conrm the validity of some of the pain parameters on the
symptom management. BPS (e.g., ghting ventilator) and the usefulness of the BPS in
making analgesic decisions. Recently, certain behaviors were
documented to be associated with procedural pain experi-
9= enced by acutely or critically ill patients; these included gri-
Symptom Assessment and Management: An macing, rigidity, wincing, shutting of eyes, verbalization,
Essential Component of Palliative Care moaning, and clenching of sts.23 Patients with procedural
pain were at least three times more likely to have increased
Pain Assessment behavioral responses than patients without procedural pain.
These ndings provide support to the assessment of specic
Although pain was identied in the Study to Understand pain behaviors in patients who are unable to self-report. How-
Prognoses and Preferences for Outcomes and Risks of Treat- ever, behavioral measures are only proxies for the patients
ments (SUPPORT) study as one of the most prevalent and dis- subjective reports, even though they are frequently the only
tressing symptoms of seriously ill patients dying in large measures available. As another proxy measure, nurses can use
teaching hospitals,11,13 hospitalized patients continue to receive their imaginations to identify possible sources of pain by ask-
inadequate pain management.17 Pain research focusing on ing the question, If I were this patient and had intact sensa-
dying ICU patients remains scarce, but advances that have tions, what might be making me uncomfortable? Even if
been made in the assessment of pain in other critically ill patients are not exhibiting behavioral or physiological signs of
patient populations can be applied to dying patients.18,19 The pain, it does not mean that they are pain free.
patients self-report continues to be the most valuable indica- The comfort of 31 adult patients undergoing terminal wean-
tor of pain.20 Simple numeric or word rating scales, word qual- ing from mechanical ventilation was assessed by use of behavior
ity scales, and body outline diagrams may be offered to patients observation and physiological measures.24 Moderate correla-
who are able to point to words, numbers, and gures. It is tions (r = 5.60; P = 0.001) found between the Bizek Agitation
important to determine the quality, timing, and location of Scale (BAS)25 and the previously validated COMFORT scale26
pain whenever possible, so that treatment may be guided by suggested that these observational measures may be able to
accurate information rather than assumptions. The specicity evaluate responses to pain, distress, or agitation in certain dying
of the pain presentation guides the selection of optimal treat- ICU patients. Correlations between electroencephalogram
ment interventions. (EEG)-derived data, obtained through the use of a cerebral
Often, critically ill patients are unable to self-report because function monitor,27 and the BAS and COMFORT scales were
of their disease process, technological treatment interventions r = 5.53 and r = 5.58, respectively (P = 0.001). Findings from
(e.g., mechanical ventilation), or the effects of medications this study about behavior and physiological measures are pre-
(e.g., opioids, benzodiazepines [BZDs]). The use of BZD infu- liminary at best. EEG data were derived from only 11 of the 31
sions may make patients too sedated to respond to pain, patients, because the others had global anoxic encephalopathy.
although pain may still be present. On the other hand, the use Furthermore, the specic origin or cause of discomfort
(e.g., pain, dysphoria) cannot be determined from such global of intermittent opioid boluses for breakthrough pain
measures. However, the ndings show promise for the clinical (Table 431).
usefulness of comfort assessment measures that can assist Clearly, concerns about patients becoming tolerant of or
clinicians to assess pain and the effectiveness of treatment dependent on opioids are misplaced during terminal care. What
interventions at the end of life. is important is that professionals recognize the development
of tolerance, which is the need for larger doses of opioid anal-
Procedural Pain gesics to achieve the original effect,34 and increase the dosage
as necessary. There is no ceiling effect from opioids; the dose
Before and during the transition from aggressive care to end- can be increased until the desired effect is reached or intolera-
of-life care, critically ill patients undergo many diagnostic and ble side effects develop. If it is the familys wish to have the opi-
treatment procedures. Many of these, such as central, arterial, oid infusion decreased in a sedated patient to assess that the
and peripheral line placements, nasogastric tube placements,28 patient is able to participate in end-of-life decision-making,
chest tube removal,29,30 and endotracheal suctioning,31 are quite this must be done slowly and carefully. Opioid-dependent
painful and may be the primary cause of suffering at the end of patients are at high risk of developing withdrawal symptoms,34
life.28 Turning, one of the most ubiquitous procedures per- which would seriously increase their discomfort. In this situa-
formed in acute and critical care settings, was shown to be the tion, physical dependence can be addressed by gradually low-
most painful of six commonly performed procedures.31 Other ering the opioid dose while carefully assessing for signs of pain
procedures that may be unnecessary, painful, and unpleasant or withdrawal.
include central line insertions,22 wound dbridement, fre- Titration of analgesics to achieve the desired effect is one of
quent dressing changes,31 and the use of sequential compres- the most challenging and important contributions that ICU
sion devices.22 Paice and colleagues32 demonstrated through a nurses can make to the comfort care of dying patients. The
chart review that 71% to 100% of 57 patients in a medical ICU desired effect can often be described as use of the least amount
had numerous procedures during their last 48 hours of life. of medication necessary to achieve the greatest comfort along
These procedures included intravenous (IV) medications and with the optimum level of tranquil awareness.
uids, urinary catheters, antibiotics, x-ray studies, enteral In ICU settings, concern may arise that administration of
feeding tubes, and ventilators. Nurses can act as gatekeepers analgesics in the amounts necessary to provide comfort could
by evaluating the appropriateness of procedures being cause death. It is essential that ICU health professionals
planned for patients, especially after a decision has been made understand the double-effect principle. In brief, the double-
to end life support, and they can advocate for their omission. effect principle states that administration of analgesics to
Helping patients avoid iatrogenic suffering is a fundamental dying patients in the amounts necessary to decrease pain and
part of palliative care.28 The most important procedures for suffering, although it might have the unintended consequence
patients to experience at the end of life are those that promote of hastening death, is a good, ethically sound way to treat a
comfort. Yet, when necessary procedures must be performed, dying patient.35 This principle, framed in ethics, provides sup-
the nurse can facilitate pain management before and during port to such an action when the clinicians moral intent is
procedures. directed primarily at alleviating suffering rather than intend-
ing to kill. In a survey of 906 critical care nurses in the United
Pharmacological Management of Pain States, almost all respondents (98%) agreed or strongly agreed
with the double-effect principle.36
Numerous categories of analgesics and types of modalities
exist for administration to critically ill patients.33 As in all Nonpharmacological Management of Pain
situations, the selection of analgesics should depend on the
specic pain mechanism, and the route and modality should be Nonpharmacological interventions for pain management
matched to their predictability of effectiveness. Although no complement, but do not substitute for, the use of pharmaco-
comprehensive survey of pain management techniques used logical interventions. Numerous therapies may be used by
for dying ICU patients has been reported, the most common critical care nurses to augment the administration of medica-
analgesic intervention is IV opioids. Use of a continuous infu- tions to promote patient comfort. They include the use of dis-
sion of an opioid allows for titration of the drug to a level of traction (e.g., music, humor), relaxation techniques (e.g.,
analgesic effectiveness and for maintenance of steady plasma visual imagery, rhythmic breathing), and massage.37 Even
levels within a therapeutic range. Foley18 presented the follow- during occasions when the cognitive status of a somnolent
ing recommendations for the use of opioids in dying ICU ICU patient is uncertain, the patient can be provided infor-
patients: (1) choose a specic analgesic therapy on the basis mation about activities being done to and around them. Fam-
of individual patient characteristics; (2) know the equianalgesic ily members can be encouraged to assist with the provision of
dosage of a drug and its route of administration; (3) choose the comfort measures and may welcome this way of participating
route of administration that is appropriate to the patients in care and decreasing their sense of helplessness. Family
needs; and (4) develop a dose titration protocol. In addition, involvement is discussed in further detail in a later section of
health care professionals may consider the administration this chapter.
Table 431
Pharmacologic Symptom Management
Drug Type Most
Symptom Frequently Used Method of Administration Usual Dose*
Pain Opioids (e.g., morphine, Continuous IV infusions with Continuous infusion: 110 mg/h
fentanyl, hydrocodone, use of intermittent boluses for morphine equivalents
methadone) procedure-related pain or Bolus: 15 mg IV morphine equivalent
during treatment withdrawal slow push; titrate to effect
Anxiety/ Benzodiazepines (e.g., Same as for opioids Continuous midazolam infusion:
Agitation lorazepam, midazolam) 225 mg/h or titrate to effect
Bolus midazolam: 510 mg IV to
augment continuous infusion
Continuous lorazepam infusion:
15 mg/h or titrate to effect
Bolus lorazepam: 110 mg IV q68h to
augment continuous infusion
Haloperidol IV boluses Bolus: 0.510 mg IV
Propofol Continuous IV infusion Continuous: 50300 mg/h
Dyspnea Oxygen Multiple methods Concentration as needed
(e.g., nasal cannula, mask,
ventilator)
Opioids (e.g., morphine) Continuous IV infusion and/or See above for IV doses
IV bolus; or per nebulizer Per nebulizer: 2.5 mg in 3 mL saline
(preservative free) or sterile water q4h
Benzodiazepines See above See above
Bronchodilators (e.g., Alupent) Per nebulizer Alupent: 2.5 mL 0.40.6% solution
Diuretics (e.g., Lasix) IV bolus, slow push Bolus Lasix: 2040 mg IV
Anticholinergics (e.g., atropine) Per nebulizer Atropine: 0.025 mg/kg diluted with
35 mL saline three or four times
daily; doses not to exceed 2.5 mg
*Drug doses are general recommendations. Dosing should be individualized to a particular patient. Under usual circumstances, start with low doses, wait for effect,
and titrate to desired effect.
Sources: Govoni et al. (1996), reference 138; Harvey (1996), reference 47; and Kuebler (1996), reference 139.
o] Common behavioral or physiological signs of anxiety include

Anxiety, Agitation, and Sedation trembling, restlessness, sweating, tachycardia, tachypnea, dif-
culty sleeping, and irritability. Several agitation/sedation assess-
An important part of palliative care in the ICU is assessment ment scales are available (e.g., Jacobi and colleagues33). These
and treatment of anxiety and agitation. There are many reasons scales can be printed on the patient owsheet or on a separate
for a dying patient to be anxious or agitated, or both. Assess- form and used as a bedside assessment tool. Nurses can plan
ment of anxiety and agitation provides the practitioner with periodic and simultaneous assessments of pain using pain rat-
information that can guide the use of specic interventions. ing scales and agitation scales. The frequency with which the
scales are used depends on the patients condition and the
Assessment of Anxiety and Agitation schedule for evaluating treatment interventions.
Simple numeric rating scales for anxiety can be used if the Pharmacological Management to Promote
patient can self-report to identify how much the patient is psy- Sedation in Anxious or Agitated Patients
chologically bothered. Critical care clinicians and patients are
familiar with the use of the 0-to-10 numeric rating scales for Along with opioids, other categories of sedating drugs are fre-
pain. Anxiety word anchors can be substituted for pain word quently used in the ICU, especially for patients who are
anchors so that the numeric rating scales also can be used to mechanically ventilated. Several guidelines,33 algorithms,38
quantify the degree of distress. and review articles3941 exist regarding the use of analgesics and
sedatives. Often, the goal of combined analgesic-sedative ther- occur with these high doses.33 This drug has few cardiovascu-
apy is to promote physical and psychological comfort. Practice lar effects unless given rapidly, in which case vasodilation and
decisions include choosing the right type and combination of hypotension may occur. Haloperidol does not depress respira-
medications; determining whether to use interrupted sedative tions; rather, it has a calming effect on agitated, disoriented
infusions (which provide opportunities for patient assess- patients, making them more manageable without causing
ment) or continuous infusions42; determining appropriate excessive sedation. However, haloperidol has some signicant
clinical endpoints for pharmacological interventions; and adverse effects, such as reduction of the seizure threshold, pre-
evaluating the effectiveness of sedation protocols on practices cipitation of extrapyramidal reactions, and prolongation of
and outcomes.42,43 the QT interval leading to torsades de pointes.39 Once a
The appropriate pharmacological agent to control agita- haloperidol drug dosage has been established, it should not be
tion and anxiety is selected according to the desired effect. For necessary to increase the dose to obtain the same effect over
example, uncomplicated anxiety is best treated with BZDs, time, because tolerance should not occur.
whereas paranoia, panic, and fear accompanied by delusions Propofol is a highly lipophilic IV sedative/hypnotic agent
and hallucinations may require the addition of antipsychotic that has a very rapid onset of action and short duration. It is
agents. BZDs are excellent agents for anxiolysis, but they pos- indicated for use in the ICU to control agitation and the stress
sess no analgesic or psychological properties. Concomitant use response in patients who are mechanically ventilated and
of BZDs, opioids, and certain neuroleptic agents may relieve those who require deep sedation for procedures.33 However,
anxiety-provoking symptoms through a synergistic action.44,45 propofol has no analgesic properties and must always be used
When used together, these drugs can be administered in lower in conjunction with analgesics whenever the patient might
doses less frequently, have fewer side effects, and can decrease experience pain. During initial use of propofol, a drop in sys-
or delay development of tolerance or dependence through the tolic blood pressure, mean arterial blood pressure, and heart
use of smaller doses of each drug. At lower doses, BZDs reduce rate may occur in patients with uid decits and in those receiv-
anxiety without causing central nervous system sedation or ing opioids. The rapid loss of clinical effect of propofol renders
a decrease in cognitive or motor function. With increasing it a valuable sedative agent in the critical care environment.
dosages, inhibition of motor and cognitive functions as well as Continuous infusion doses may range from 50 to 300 mg/h47
central nervous system depression does occur. Sufciently (see Table 431). The short effective half-life of propofol allows
high doses can induce hypnosis and coma.46 rapid clinical evaluation of the patients level of consciousness
The most frequently used BZDs in critical care are midazo- and determination of the minimum dose required for effective
lam and lorazepam. When midazolam is used as a continuous sedation. This may make it a useful drug during situations in
infusion, the dose can be 1 to 2 mg/h for mild sedation or as which intermittent interaction with professionals and family
high as 25 mg/h for severe agitation if the patient is mechani- members is desired.
cally ventilated (see Table 431). If the degree of sedation is not
adequate, the serum level of midazolam can be raised by one Nonpharmacological Interventions
to three small bolus IV injections while simultaneously increas- for Anxiety and Agitation
ing the infusion rate.47
Lorazepam gives effective sedation and anxiety relief over a Numerous interventions exist that may promote tranquility
longer period than does midazolam. Cardiovascular and res- and sedation in a critical care environment. These include
piratory effects occur less frequently with this drug than with control of environmental noise and the use of clocks, calen-
other BZDs. It may also act synergistically with haloperidol, a dars, and personal articles such as pictures from home. Music
neuroleptic agent discussed later in this chapter. Lorazepam therapy can be used to decrease anxiety and pain as well as
can be administered intravenously, intramuscularly, or orally. promote sleep. As noted earlier, imagery and relaxation tech-
IV doses may be 1 to 10 mg every 6 to 8 hours. In the critical niques also provide a means of distraction for patients and
care setting, it can also be administered as an infusion at 1 to help to alleviate anxiety.37
5 mg/h and titrated to clinical effect.47 The act of physically caring for a patient and providing
As with opioids, tolerance to BZD effects can develop in gentle touch is a major source of comfort for patients in criti-
critically ill patients receiving midazolam infusions.39 In addi- cal care. Taking the time to provide simple measures such as
tion, BZD dependence can occur, evidenced by symptoms back rubs and massages, repositioning the patient, smoothing
such as dysphoria, tremor, sweating, anxiety, agitation, muscle bed linen wrinkles, removing foreign objects from the bed,
cramps, myoclonus, and seizures on abrupt medication with- providing mouth and eye care, and taping tubes to maintain
drawal.39 patency and inhibit pulling effectively promotes comfort and
It is important that patients in ICUs be routinely assessed decreases anxiety. Family member participation in caregiving
for the presence of delirium.33 Haloperidol is a frequently used activities, such as bathing, massages, and back rubs, can have a
neuroleptic for critically ill patients with delirium. A loading powerful calming effect on patients and promote sleep and
dose of 2 mg can be administered, followed by twice that dose psychological integrity.
repeated every 15 to 20 minutes while agitation persists. Doses For alert patients, increasing opportunities for control is a
as high as 400 mg have been reported, but adverse effects may strategy that can reduce the sense of helplessness that often
accompanies patients who are critically ill. This sense of con- when death is believed to be inevitable despite aggressive
trol can be promoted by allowing alert patients to make deci- interventions.
sions about the timing of interventions. Facilitating contact The Presidents Commission for the Study of Ethical Prob-
and communication with clergy, psychologists, or psychia- lems in Medicine and Biomedical and Behavioral Research51
trists, if appropriate, can help to alleviate the distress experi- supported the right of a competent patient to refuse life-
enced by both patients and families. sustaining and life-prolonging therapy. The Commission also
noted that there is no moral difference between withholding
and withdrawing therapy. A number of critical carerelated
o] professional organizations5254 have published position papers
Other Distressing Symptoms in support of the patients autonomy regarding withholding
and withdrawal decisions.
Scant research has been conducted on symptoms experienced If patients are unable to make treatment decisions, these
by ICU patients at high risk of dying. A notable exception was decisions must be made on the patients behalf by surrogates
the study by Nelson and colleagues.48 These investigators con- or by the health care team.55 Optimally, patients living wills or
centrated on the symptom experiences of ICU patients with advance directives can provide the direction for decisions
current or past cancer diagnoses, because the expectation was related to treatment withholding or withdrawal. Yet, only 10%
that almost half of that group would die during hospitaliza- to 20% of patients complete them.55 When surrogates are
tion. Investigators used a modied Edmonton Symptom asked to participate in decision-making, it is recommended
Assessment Scale (ESAS) to have patients rate their symptoms. that the decisions be made based on the following, in order of
The ESAS was modied by including or substituting symp- preference: (1) the patients previously stated wishes; (2) infer-
toms they thought were more relevant to ICU patients and by ences based on the patients values or life goals; (3) the
using a four-point verbal descriptor scale (None, Mild, Mod- patients best interests, as determined by weighing the benets
erate, Severe). In a sample of 100 patients who met inclusion and burdens of treatment.55 Families work with the health care
criteria, 50% (mean age, 63 years; 64% male) were able to report team members caring for their loved ones to arrive at deci-
their symptoms; 60% of these patients were mechanically ven- sions to withdraw life support.14 They often struggle with con-
tilated. More than 50% of patients reported the following cern that they are doing the right thing. Providing clear,
symptoms to be moderate to severe during daily assessments consistent information about the patients prognosis (albeit in
(exact number of days not reported): discomfort (75%), the face of prognostic uncertainty) provides support for fami-
unsatised thirst (71%), difculty sleeping (68%), anxiety lies in their decision-making.
(63%), pain (56%), and unsatised hunger (55%). More than When a decision to forgo life-saving therapy is made in an
one third of patients reported depression or shortness of acute care setting, there is a common sequence of withdrawal
breath or both. This study demonstrated that a high propor- of therapies: blood products, hemodialysis, vasopressors,
tion of cancer patients at high risk of dying in ICUs experience mechanical ventilation, total parenteral nutrition, antibiotics,
substantial discomfort. Furthermore, half of the patients in IV uids, and tube feedings.56 Withdrawal of therapies should
the study were unable to report their symptoms, evidence of be preceded by chart notations of DNR orders and a note
the ongoing challenge of symptom assessment in critically ill documenting the rationale for comfort care and removal of
patients. life support.57 There should be a clear plan of action and pro-
ICU nurses play a major role in alleviating distressing symp- vision of information and support to the family. Adequate
toms such as thirst, sleeplessness, and general discomfort documentation of patient assessments, withdrawal decisions
experienced by patients at the end of life. Because nurses are and plans, therapy withdrawal orders, and patient and family
the health care providers who are constantly at the bedside, responses during and after withdrawal is essential.58 There is
they can assess the presence of these symptoms, advocate for considerable variability regarding physician documentation
effective pharmacological therapy, use additional nursing com- of discussions with families regarding withdrawal of life
fort measures, and provide for continuity of therapy. Symp- support.59 This lack of documentation may infer, rightly or
tom management is a special contribution that ICU nurses wrongly, lack of interactions with families about treatment
can make to their patients at the end of life. decisions.
Withdrawal of Ventilator Therapy with Consideration

o] of Analgesic and Sedative Needs
End-of-Life Practice Issues: Withholding and
Withdrawing Life-Sustaining Therapies It is important to understand the methods by which mechan-
ical ventilation may be removed. The primary goal during
Limiting life-sustaining therapies in an ICU is becoming this process should be to ensure that patients and family mem-
more common. It is estimated that withholding or with- bers are as comfortable as possible, both psychologically and
drawing of life support precedes up to 75% of deaths in physically. Two primary methods of mechanical ventilation
ICUs.49,50 Generally, life-sustaining treatment is withdrawn removal exist: immediate extubation and terminal weaning
(Table 432). Debates continue as to which of these methods is It is important to provide comfort to dying infants, who
optimal for the patient, and often the method is determined could experience pain and distress similar as older patients.
according to the physicians, patients, or family members Opioid analgesia was provided to 84% of 121 infants when life
comfort levels.60 support was withdrawn or withheld in an intensive care nurs-
Although there is considerable variability regarding the ery.66 Importantly, there was no difference in time to death
preferred approach to withdrawal,61 recommendations regard- according to opioid dose. As with older patients, attention
ing specic procedures for withdrawal are available.57,58,6064 must be paid to involvement of the family in decision-making,
Table 433 presents a protocol for withdrawal of mechanical providing support to the family, and good documentation of
ventilation for the clinicians consideration that includes spe- decisions and treatments. However, documentation was found
cic recommendations regarding use of analgesics and seda- to be lacking for 18 infants who died after ventilator with-
tives. Consensus guidelines on the provision of analgesia and drawal.67 Without proper documentation, evaluation of com-
sedation for dying ICU patients support the titration of anal- petent and compassionate care is limited.
gesics and sedatives based on patients requests or observable Research to guide the practice of ventilator withdrawal is
signs indicative of pain or distress.65 The guidelines emphasize scant. A small group of adult patients (N = 42) underwent
that no maximum dose of opioids or sedatives exists, espe- withdrawal as part of a treatment limitation plan.68 Clinical
cially considering that many ICU patients receive high doses of data were collected from their medical records, including the
these drugs over their ICU time course. Anticipatory dosing specic method of ventilator withdrawal. Twenty-eight patients
(Truog and associates,61 p. 2339), as opposed to reactive dosing, (85%) died after endotracheal tubes and mechanical support;
is recommended by some to avoid patient discomfort and dis- 10 died with articial airways in place but mechanical support
tress.61,65 removed; and 4 died after gradual removal of airway and/or
Table 432
Methods of Mechanical Ventilation Withdrawal
Immediate extubation Terminal weaning
Description
Abrupt removal of the patient from Physicians or other members of the ICU team
ventilator assistance by extubation (e.g., respiratory therapists, nurses) gradually
after suctioning (if necessary). withdraw ventilator assistance. This is done by
Humidied air or oxygen is administered decreasing the amount of inspired oxygen,
to prevent airway drying. decreasing the ventilator rate and mode, removal
of positive end-expiratory pressure (PEEP), or a
combination of these maneuvers. Usual time from
ventilator to T-piece or extubation: 1560 min.
Positive aspects
Patient free of technology; dying Allows titration of drugs to control symptoms;
process less likely to be prolonged; maintains airway for suctioning if necessary;
intentions of the method are clear. patient does not develop upper airway
obstruction; longer time between ventilator
withdrawal and death; moral burden on family
may be less because method appears less active.
Negative aspects
Noisy breathing, dyspnea may be May prolong dying; patient unable to
distressful to patient/family. communicate; machine between patient
and family.
Time course to death

Unpredictable. Usually shorter than Unpredictable
with terminal weaning.
Sources: Faber-Langendoen & Lanken (2000), reference 55; Rubenfeld & Crawford (2001), reference 58; von Gunten
& Weissman (2005), references 60, 62, 63; Truog et al. (2001), reference 61.
Table 433
A Protocol for the Withdrawal of Mechanical Ventilation
I. Anticipate and prevent distress
A. Review process in advance with patient (if awake), nurse, and family. Identify family goals
during withdrawal (e.g., ability to communicate versus sedation). Arrange a time that
allows the family to be present, if they wish.
B. Provide for special needs (e.g., clergy, bereavement counselor). Assess respiratory pattern
on current level of respiratory support.
C. Use opioids and/or benzodiazepines* to control respiratory distress (i.e., respiratory rate
>24 breaths per minute, use of accessory muscles, nasal aring, >20% increase in heart
rate or blood pressure, grimacing, clutching). In patients already receiving these agents,
dosing should be guided by the current dose.
D. In the absence of distress, reduce intermittent mandatory ventilation (IMV) rate to less
than 10 and reassess sedation.
E. Discontinue therapies not directed toward patient comfort:
1. Stop neuromuscular blockade after opioids and/or benzodiazepines have been
started or increased.
2. Discontinue laboratory tests, radiographs, vital signs.
3. Remove unnecessary tubes and restraints.
4. Silence alarms and disconnect monitors.
II. Optimize existing function

A. Administer breathing treatment, if indicated.
B. Suction out the mouth and hypopharynx. Endotracheal suctioning before withdrawal may
or may not be advisable depending on patient distress and family perception. Consider
atropine (12.5 mg by inhalation q6h), scopolomine (0.30.65 mg IV q46h), or
glycopyrrolate (12 mg by inhalation q24h) for excessive secretions.
C. Place the patient at least 30 degrees upright, if possible.
III. Withdraw assisted ventilation

A. In general, changes should be made in the following order:
1. Eliminate positive end-expiratory pressure (PEEP).
2. Reduce the fractional oxygen content of inspired air (Fio2).
3. Reduce or eliminate mandatory breaths.
4. Reduce pressure support level.
5. Place to ow-by or T-piece.
6. Extubate to humidied air or oxygen.
B. Constant reevaluation for distress is mandatory. Treat distress with additional bolus doses
of opioids and/or benzodiazepines equal to hourly drip rate and increase drip by 2550%.
C. Observe for postwithdrawal distress, a medical emergency. A physician and nurse should
be present during and immediately after extubation to assess the patient and to titrate
medications. Morphine (510 mg IV q10 min) or fentanyl (100250 g IV q35 min)
and/or midazolam (25 mg IV q710 min) or diazepam (510 mg IV q35 min) should
be administered.
*Drug doses are difcult to specify because of the enormous variability in body weight and composition, previous
exposure, and tolerance. In opioid-nave patients, 220 mg morphine or 25250 g fentanyl, followed by an opioid
infusion of one-half of the loading dose per hour, is a reasonable initial dose.
Usually the effects of neuromuscular blocking agents (NMBAs) can be reversed within a short period, but it may
take days to weeks if patients have been receiving NMBAs chronically for management of ventilatory failure.61
Neuromuscular blockade masks signs of discomfort. Therefore, clinicians should feel that the patient has regained
sufcient motor activity to demonstrate discomfort.
There is no one sequence applicable to all patients because their clinical situations are so variable. The pace of
changes depends on patient comfort and may proceed as quickly as 515 min or, in an awake patient to be extubated,
over several hours.
Patients who require high levels of ventilatory support may die after small adjustments such as reduction or
elimination of PEEP or decrease in Fio2 to 21%. In such patients, the physician should be present during and
immediately after the change in therapy to assess the patient.
Source: Modied from Prendergast (2000), reference 64, and Prendergast (unpublished guidelines), with authors
permission. Also, from Treece et al. (2004), reference 140.
mechanical support. Most of the patients (88%) received

9=
morphine during withdrawal. At some time during the with-
case study
drawal process, 64% of the patients exhibited at least one
Mr. G, an 84-Year-Old Man with
sign of distress, most often labored breathing or upper air-
Metastatic Cancer
way noise. The investigators reported that their data suggest
that little is gained by gradual withdrawal of respiratory Mr. G was an 84-year-old Caucasian man who had metasta-
support. tic cancer. He was admitted to the hospital for aspiration
Other investigators evaluated responses of 31 adult patients pneumonia. He aspirated shortly after admission, developed
to rapid terminal weaning from mechanical ventilation.24 respiratory distress, and was intubated and transferred to
Using both observational and physiological measures, they ICU. The next day, I saw the physician in the hall with the
determined that the predominantly comatose patients in their daughter and son, having what appeared to be a very
sample remained comfortable with the use of low doses of emotional conversation. Shortly after that, the daughter
morphine and BZDs. A larger, randomized clinical trial of var- walked into the room and stood by the edge of the bed. The
ious methods of withdrawal may help to determine whether physician came in, and the decision was made to withdraw
one method is more efcacious than another. Cumulative support. The daughter understood her fathers condition:
morphine doses from 1 to 70 mg/h have been reported to be He wouldnt want this, she said. I quickly arranged for a
used for terminal weaning.24,57,6971 In a recent study of ventila- private area in the ICU room in which to transfer him.
tor withdrawal procedures,57 bolus doses of opioids or BZDs After getting the room ready, we moved them back there
or both effectively managed two thirds of 21 patients symp- and I took over care. I tried to find out if there was
toms, whereas the remaining patients required continuous anything special they wanted to do or needed before we
infusions. These research ndings support the need for indi- took out the breathing tube. I was pretty sure it wouldnt
vidualizing pharmacological support during life support with- last long after that.
drawal. Morphine had given the patient nightmares in the past,
Patients should be withdrawn from NMBAs before with- so we started a drip of fentanyl and Versed. This helped to
drawal from life support. The use of NMBAs, such as vecuro- ease the daughters concerns about what her father was going
nium, makes it almost impossible to assess patient comfort; to experience. After I was sure he had been adequately med-
while appearing comfortable, patients may be experiencing icated, I removed the endotracheal tube. It was also very
pain, respiratory distress, or severe anxiety. The use of NMBAs important to the daughter that any lines or tubes that could
prevents the struggling and gasping that may be associated be removed had been. So the only thing I left was the IV tube
with dying, but not the patients suffering.72 The horror of to administer the medications. It was hard not to have that
such a death can only be imagined. The withdrawal of these rhythm strip showing so that I could tell for sure when
agents may take considerable time for patients who have been things were about to end. But I knew that is what the family
receiving them chronically, and patients continue to have wanted. Another nurse stopped in to see how we were doing
effects from lingering active metabolites.61 and asked if they wanted their father shaved. She explained
Regardless of the method used to withdraw life-sustaining to me it would be nice for the daughter to be able to kiss his
therapies, the critical care nurse plays a major role during the smooth face good-bye, especially if that was what she was
decision and implementation of withdrawal of patients from used to. I was really struck by that idea; it hadnt even
mechanical ventilation. Increased nursing involvement can crossed my mind. The daughter thought that would be nice,
help provide optimal care to these patients. Specifically, the so I got the supplies. It turned out to be a beautiful experi-
nurse can ensure that a rationale for, and all elements of, the ence. As I gently warmed his face and shaved him, his daugh-
plan have been adequately discussed among the team, ter told me that she was so glad that he had just been
patient, and family. The nurse can ensure that adequate time baptized into the Catholic faith and had received commun-
is given to families and their support persons, such as clergy, ion the previous week. It obviously meant a lot to her. Dig-
to reach as good a resolution as possible. The family needs ging in her purse, she pulled out a Bible and read some
reassurance that they and the patient will not be left alone scripture to him. She shared other things that she remem-
and that the patient will be kept comfortable with the use of bered about him, and we laughed together and then just qui-
medications and other measures. As discussed earlier, opi- etly reected.
oids, alone or in combination with BZDs, are used during His breathing had been a little labored as I began, so I
withdrawal to ensure that patients are provided the optimal increased his IV dosage. Right after I nished shaving his face
degree of comfort. the best that I could, the daughter looked at me. Look at
The following case study, reported by a nurse, illustrates how his breathing relaxed and he calmed down when you did
important aspects of withholding and withdrawing life- that. Thank you so much. To her, the touch and caring had
sustaining therapies.* made the difference.
Finally, his breathing stopped, and I nodded that it was
*The authors thank Julie Waters, RN, for providing the case study. Modi- over.
cations to Ms. Waters original case study have been made by the authors. o]
o] with family presence have yielded similar results, and one study
Care for the Family of the Dying ICU Patient found no adverse psychological effects on the part of family
members after the witnessed resuscitation.8587
Although the focus of care in many critical care areas is on the Because children as young as 5 years old have been reported
critically ill patient, nurses and other clinicians with family to have an accurate concept of death,88 their visitation needs
care skills realize that comprehensive patient care includes care should also be considered when a family member is dying.
of the patients family. A reciprocal and all-important relation- Although researchers investigating family presence in pediatric
ship exists between the family and the critically ill family mem- populations have found increased behavioral distress in children
ber. A change in one affects the other, and vice versa. Classic when parents were present, both parents and children over-
and contemporary research that describes the anticipatory and whelmingly prefer family presence.89,90 With proper preparation
acute grief reactions experienced by family members when their and debrieng, children can visit a critically ill family member in
loved one is dying point to this powerful reciprocal relation- the ICU without ill effects.91
ship.7377 Therefore, no discussion of palliative care in the ICU Finally, caring for the critically ill, dying patient and her or
is complete without also discussing care of the dying patients his family can call forth feelings of failure for clinicians bent
family. Family is dened here as any signicant other who par- on cure and force health care providers to reect on their own
ticipates in the care and well-being of the patient. mortality.92 Perhaps this helps to explain why so many health
The clinical course of any given critically ill, dying patient care providers believe that family presence is stressful and dis-
can vary tremendously, ranging from a rapid unfolding over ruptive to the health care team caring for the critically ill
several hours to a gradual unfolding over several days, weeks, patient.86,9395 Yet, one study found that family presence did not
and even months. How a family copes, of course, is also highly affect self-reported stress symptoms in health care providers
variable. Caring for families at any point along the dying trajec- participating in the resuscitation events.96 The emotional bur-
tory, however, encompasses three major aspects: access, infor- den for health care providers when providing palliative care is
mation and support, and involvement in caregiving activities. discussed later in this chapter.
Access Information and Support
A crucial aspect of family care is ensuring that the family can Information has been identied as a crucial component in fam-
be with their critically ill loved one. Historically, critical care ily coping and satisfaction in critical care settings.61,97 Support,
settings have severely restricted family access and discouraged in the form of nurses caring behaviors and interactions, is enor-
lengthy family visitation. Commonly cited rationales to limit mously inuential in shaping the critical care experience for
family access include concerns regarding space limitations, both patients and their families.92,98100 In the context of caring
patient stability, infection, rest, and privacy; the negative effect for a critically ill, dying patient, however, nurses and physicians
of visitation on the family; and clinicians performance abili- alike have reported high stress related to death-telling, or noti-
ties. Some of these concerns have merit, whereas others, such fying family members of the patients death or terminal progno-
as adverse patient-related issues and a negative effect on the sis.101104 These same studies point to the fact that few health care
family, have not been borne out in the research literature. providers feel they have the skills and knowledge necessary to
Many ICUs around the world routinely limit visitors to two counsel families effectively during this emotionally charged
at any one time.78,79 Space limitations in critical care areas can time. The ethical principle of honesty and truth-telling collides
be profound, because most ICUs were designed for efcient with the limits of knowing the truth precisely when there is clin-
use of life-saving machinery and staff and were not intended ical ambiguity and also with the suffering imposed on a family
for end-of-life vigils by large, extended families. Ensuring that having to face the hard truth. Compassionate truth-telling
all interested family members have access to their loved ones requires dialogue and relationship, timing, and attunement,105
bedside can present challenges to the often already narrow all of which are relational aspects that are frequently overlooked
connes of the ICU. However, family members of dying loved in the hectic pace of the ICU. Add patient, family, and health
ones should be allowed more liberal access (both in visiting care provider culture to the equation, and one can readily
time and in number of visitors allowed).75,80 Patients are con- understand why communication between involved parties is a
fronting what may be the most difcult of life passages and less than perfect science.106 The educational implications for cli-
they, therefore, may need support from their family members. nicians are addressed later in this chapter.
There is a growing body of literature that supports family Overall satisfaction with end-of-life care has been shown to
access to patients during invasive procedures and resuscita- be signicantly associated with completeness of information
tion. Facilitating family access during such times has come to received by the family member, support and care shown to the
be known as facilitating family presence, a practice supported patient and family, and satisfaction with the amount or level of
by the Emergency Nurses Association and the American Heart health care received.75,100,107109 Family conferences have been
Association.81,82 Researchers have investigated the impact of used extensively as a means to improve communication between
family presence on patients and found increased patient com- health care providers and family members, yet few studies have
fort and satisfaction.83,84 Studies examining family satisfaction investigated best practices in relation to the timing, content,
and participants necessary for optimal communication during caught between differing perceptions held by physicians and
a family conference.110112 family members concerning patient progress and treatment
Some hospitals have created interdisciplinary teams of help- goals. Facilitating and coordinating dialogue and consensus
ing professionals to work with hopelessly ill patients and their between these groups as well as caring for the dying patient
families, in an effort to meet patients and families physical, and family can be physically and emotionally exhausting. If
informational, and psychosocial needs.113117 Such teams usu- the dying process is prolonged, the nurse can become frus-
ally include a nurse, physician, chaplain, and social worker. trated and fatigued. Although health care providers often cope
Working in concert with the nurses and physicians at the bed- with this stress by emotionally disengaging themselves from
side, these interdisciplinary teams can more fully concentrate the charged atmosphere, emotional distancing has been
on end-of-life issues so that, theoretically, no patient or family shown to hamper skill acquisition and the development of
needs go unmet during this time. involvement skills.123 Involvement skills are dened here as the
Finally, because feelings of grief in surviving family members cluster of interpersonal skills that enable a nurse and the patient
are still commonly unresolved at 1 year after a loved ones and family to establish a relational connection. This section dis-
death, many critical care units across the lifespan have organized cusses two strategies to help health care providers sustain their
bereavement follow-up programs.118122 These programs typi- caring practices and extend their involvement skills; namely,
cally involve contacting the surviving family (by telephone or by sharing narratives and death education.
mail) monthly for some period of time and at the 1-year anniver-
sary of their loved ones death. In addition to remembering and Sharing Narratives
supporting the family, these programs have also been shown to
help health care providers cope with the loss as well. Debrieng, either formally or informally, has been used effec-
tively in many settings to discuss and process critical incidents;
Involvement in Caregiving Activities analyze health care providers performance in terms of skill,
knowledge, and efciency; and learn, both personally and
Few interventional studies have examined the effect of family institutionally, from mistakes and system breakdown.92,124126
involvement on critically ill patients and their families, yet fami- Sharing stories or narratives of practice can be used to achieve
lies should have the opportunity to be helpful.61 Two studies the same goals, but in addition telling stories from practice
investigating expert nursing behaviors in caring for the dying enables clinicians to (1) increase their skill in recognizing
patients family found that expert nurses encouraged family par- patient and family concerns; (2) learn to communicate more
ticipation in patient care.118,119 Family involvement in caregiving effectively with patients, families, and other health care
can range from minor activities (such as assisting with oral care providers; (3) reect on ethical comportment and engaged
or rubbing the dying patients feet) to major activities (assisting clinical reasoning; and (4) articulate clinical knowledge devel-
with postmortem care). This involvement may be helpful for opment.123,127
family members in working through their grief by demonstrat- Creating the interpersonal and institutional space in which
ing their love in caring and comforting ways. Being involved in to both tell and actively listen to stories from practice also
meaningful caregiving activities can make a family member feel enables health care providers to share skills of involvement and
useful rather than useless and helpful rather than helpless. sustaining strategies. These understandings can provide clini-
Although physical death occurs in the dying patient, the cians with guidanceand in some cases, corrective actionto
social death is felt in the patients surviving family. Because the intervene in ways that are true to the patients condition and to
perception of death lingers at the family level long after the phys- the patients and familys best interests.105 Through reection
ical death has occurred, involving family members who are and dialogue with others, nurses and other health care
interested in participating in their loved ones care may go far providers can pool their collective wisdom and extend their
to provide closure, comfort, and connection. Unfortunately, care of dying patients and their families.
many critical care nurses still feel that families should provide
a supportive but nonparticipative role in their loved ones pro- Death Education
vision of care.120,121 Nurses facilitation of family involvement
in their dying loved ones care is a practical family intervention Closely coupled with sharing clinical narratives is the use of
which should be more widely employed if humane and com- seminars and other reective exercises aimed at preparing
prehensive palliative care is desired. nurses and other health care providers for the care of dying
patients and their families. Death education often consists of
didactic and experiential classes. Participants in these classes
o] are encouraged to reect on and share their own perceptions
Care for the Caregiver of the Dying ICU Patient and anxieties about death, as well as their attitudes toward care
of the dying patient and his or her family. This approach has
Numerous studies have described the tension between the been used with varying degrees of success with nurses, nursing
cure-oriented critical care setting and palliative care.92,98,122 students, and physicians.128130 Because many health care
The bedside health care provider, typically a nurse, often feels providers feel uneasy and ill-prepared to effectively care for
terminally ill patients and their families, this is a promising support late in the shift. They were short the next shift,
strategy that deserves more implementation and research. so I stayed over with the patient and family for another
4 hours just to kind of nish up with them. I didnt want
them to have yet a new face [work with them] for the
last hour or two of her life. Nobody who had been fol-
o]
lowing this patient was back on nights, and there were
A Good Death in the ICU: A Clinical Example
no other co-primaries coming on. And it wasnt that big
of a deal, but I guess it was for them. About a week and a
In this clinical incident,98 a critical care nurse described a 70-
half later, the [patients family] came in and brought me
year-old patient who was admitted to the ICU with end-stage
this humongous cake and two dozen roses! So, it was
liver failure. The patients son was an ICU nurse himself and was
really a good experience, because, even though it was a
the patients primary caregiver at home. The nurse described
sad outcome, they felt supported and that was pretty
how her relationship with the patients son developed:
much the only goal I had for them.
Nurse: [The patient] had diabetes, hepatitis C of
unknown etiology, and end-stage liver failure. And the This clinical incident illustrates the three major aspects of
[patients] son would go to the library and pull up arti- caring for families of dying patients: access, information and
cles on hepatitis C and hepatorenal syndrome. You support, and involvement in caregiving activities. The nurse in
know, he wanted her started on CVVH (continuous this situation tailored her family care to match what was both
veno-venous hemoltration) because somebody else required and desired by the patients son. Because the son was a
was on it and because [the therapy] was a kind of hope. nurse himself, he researched his mothers condition extensively
The son was with [the patient] when she was on the and suggested different treatment modalities. Rather than being
ward too, and he pretty much called the shots, or thats threatened by the sons interest, the nurse understood and sup-
the impression I got from the oor nurses. And I guess ported him. The nurse ensured that the son had liberal access to
some nurses in the ICU might have felt that way about his critically ill mother and encouraged hands-on involvement
him too, but this was his mom, and I guess I can under- in his mothers care.
stand his wanting to be involved. Thats the only mother The nurse developed a trusting relationship with the son,
he has. Anyway, I guess I dont feel threatened by family which enabled him to leave his mothers bedside with con-
members who need to be involved. . . . Over the next 3 dence, knowing that he would be called with any changes in her
weeks, I [involved the son in her care]he was like my status. This trusting relationship also helped, no doubt, when
extra pair of hands. I mean, he takes care of her at home discussions concerning his mothers prognosis arose. Because the
and hes a nurse. So, why ignore that part of himthat son trusted the nurse, one can imagine, for example, that he
is him. He takes care of her, she wants him there, she actively listened to her when the nurse pointed out his mothers
was calmer when he was there, and he wants to help. He bloated condition while they were bathing her together. These
helped me turn her, he gave her back rubs, he was just daily and often mundane encounters helped to forge the nurse
there. And I passed that on from shift to shift. I said, son relationship, from which both drew great satisfaction.
He wants to help. Let him. Why go look for somebody Once the decision was made to withdraw life support, the
else when somebody who wants to help is right here? nurse stayed past her shift to continue her work with the griev-
Being involved gave him a sense of helping and doing ing son. The nurse stayed over out of respect for the rela-
something [for his mother]. If everything works out, tionship that had developed, but also to provide the son with a
hell be caring for her at home. He needs to know what familiar face during the uncharted and emotionally charged
her skin looks like. . . . Another thing about that family, passage of his mothers life. Because this nurse was bearing
I always take it as a compliment when a family feels they witness to the death in particular ways shaped by the nurse
can leave when Im taking care of their family member. family relationship, a new person would not be able to enter
the situation and support the son in the same way. The nurse
Interviewer: And why is that? responded to the ethical responsibility of being in a relation-
Nurse: Because I think that means that they trust me ship with the patients family and, in so doing, facilitated the
and that its OK for them to leave. Even after nights and sons closure with this major family event.
nights of staying with his mother, [the son] was still able
to go out and take a break for himself. He knew I would
call him on his cellular phone if anything came up. . . . o]
But it was a pretty hopeless situation. She was evaluated An International Agenda to Improve
for a liver transplant but was not a candidate because of Care of Dying ICU Patients
her age and her diabetes. . . . It just got to a point where
it looked like [the patient] was suffering so much. She Considerable emphasis is now being placed on improving care
just got more and more bloated, she was like twice the at the end of life for ICU patients. The rst book that compre-
size she normally was. So, we ended up withdrawing hensively and specically addresses ICU end-of-life care has
been published.131 The Society of Critical Care Medicines 30th by family members of the dying experience of older and seri-
Critical Care Congress in 2001 devoted an entire educational ously ill patients. Ann Intern Med 1997;126:97106.
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from the SUPPORT research investigations. Crit Care Med
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sonsponsored national ICU Peer Workgroup on end-of-life
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Currently, the Robert Wood Johnson Foundation is funding
12. Walter SD, Cook DJ, Guyatt GH, Spanier A, Jaeschke R, Todd
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44o] Anna R. Du Pen and Jeanne Robison
The Outpatient Setting

I am so glad that you are there for me . . . someone on the other end of the phone who knows what
to do when I just cant sort it out.Annette, 56, colon cancer patient
Key Points Dramatic changes over the last two decades have resulted in
Twenty-four-hour accessibility to health care providers is critical to shorter and shorter hospital stays, longer survival with chronic
providing palliative care to outpatients. debilitating disease, and smaller, fractured familiesall of
Evaluation and management of physical, emotional, and spiritual which have contributed greatly to increased use of outpatient
distress at each ofce visit are primary components of outpatient services. Outpatient care is delivered in private practice ofces,
palliative care. free-standing clinics, and hospital-based outpatient settings.
Active listening in the ofce and at telephone triage contributes Individuals with chronic and terminal illnesses receive care
greatly to individualizing the plan of care. over time in the outpatient clinic or ofce setting. In these
Providing a sense of control for patients and their families is an settings, signicant long-term relationships develop among
integral part of palliative care. providers, patients, and families. As patients move toward the
end of life, visits to the clinic provide an excellent opportunity
to assess the patients and familys needs, desires, struggles, and
fears.
The months or years spent providing and receiving care in
an outpatient setting are fundamental to establishing trust
between the care team and the patient. This trusting relation-
ship is vital both early in the disease continuum and at the end
of life. Building this relationship is a critical component of the
palliative nursing role.1,2 Unlike in an acute care setting,
patients and families have time scheduled with physicians and
staff to address their needs. This allows families to avoid the
frustration of waiting in a hospital room trying to connect
with a physician or nurse to raise issues or ask questions. The
patients and familys questions are answered and processed at
one visit, and further clarifying questions and detailed responses
can ensue at the next ofce visit.
In most cases, an outpatient setting is more intimate and
less crisis driven than a hospital setting. On the other hand,
patients may have excessive time in the waiting room and may
be in very different stages of disease than others surrounding
them. In the best situation, patients and families meet and
support each other and facilities use waiting room space to
make educational materials readily available.
There is generally a certain structure to the clinic visit that
can lend itself to the integration of palliative care. In addition
to taking a history, performing a physical examination, and
reviewing medication history, the clinician can effectively
835
integrate a discussion about advance directives into the routine. physician sees patients in the clinic. A new and growing spe-
Treatment plans can be discussed and negotiated with the cialty group of acute care nurse practitioners sees very ill or
patient. An assessment of pain and symptoms can be done at the unstable patients in the hospital, again working closely with
time vital signs are taken or during telephone triage. The pain- the physician to balance outpatient and inpatient services.
related standards for outpatient care of the Joint Commission Advanced practice nurses have a higher comfort level with dis-
on Accreditation of Healthcare Organizations (JCAHO) can be cussing end-of-life issues9 and maintain a high level of expert-
used to help incorporate pain and symptom management into ise in pain and symptom management (Figure 441).
the routine documentation of outpatient care. Another area where advanced practice nurses greatly affect
care is that of transitions in the goals of care. Clinics have het-
erogenous populations of patients, whose status may range
o] from the early stages of diagnostic workup all the way through
Challenges in Outpatient Care end-of-life care. Taking a lead role in helping to continuously
reevaluate the goals of care with patients and families is a key
A number of challenges associated with the outpatient setting impact area of advanced practice nurses.
exist. The absence of a strong nursing presence is arguably the One challenge facing advanced practice nurses in some states
most critical barrier to the successful integration of palliative is the lack of prescriptive authority.10 In some states, advanced
care. For example, ideally, in an outpatient oncology practice, practice nurses, trained and skilled in palliative care manage-
registered nurses would be on staff to administer chemother- ment, are allowed to assess pain, address symptoms, and develop
apy, to provide patient teaching, and to staff telephone triage treatment plans but may not prescribe controlled medications.
systems.3,4 Assistive personnel are used for non-nursing duties, This limits patients access to pain and symptom management
such as cleaning equipment, stocking, setting up examination and creates a cumbersome process for relling pain medications
rooms, and scheduling.5 However, with shrinking resources and addressing needs for antianxiety agents. These practition-
available in all spheres of health care, the use of nonlicensed ers often become experts at the optimal use of nonsteroidal
personnel is expanding, and this trend is not likely to be antiinammatory drugs (NSAIDs), co-analgesic agents (e.g.,
reversed. tricyclic antidepressants, anticonvulsants), antiemetics, bowel
Although it is generally considered preferable for licensed care agents, and a host of other pharmacological therapies.
personnel to be responsible for duties such as medication Several states do allow nurse practitioners full prescriptive
administration and telephone triage, many outpatient settings authority, which improves access to palliative care.11 They are
employ medical assistants or administrative assistants to col- able to see patients with pain or symptom problems on the
lect intake data, take vital signs, and answer telephone calls. In same day and prescribe therapy without the presence of a
many cases, nurses are being asked to do a greater number and physician. Patients do not have to wait to receive a written pre-
variety of treatments, leading to a feeling that there is not scription from a physician or travel to an emergency room to
enough quality time with individual patients.6 Some ofces be seen by physicians not familiar with their cases.
have no registered nurse at all in the outpatient setting, caus- Finally, another signicant challenge in the outpatient set-
ing patients to have to wait for a chance to speak with the doc- ting is managing the increasingly burdensome gatekeeper role.
tor before any assistance or suggestions can be offered. This Before a chronically ill patient can be discharged from an acute
can result in considerable delay in addressing symptom man- care setting, arrangements for extended care or home nursing
agement issues and is clearly less than optimal. must be made by a hospital discharge planning team. Once this
Managed care has played a role in further splintering outpa- plan of care is established, the outpatient team must coordinate
tient care in some medical centers. For example, with a reduc- and facilitate the patients care plan. This can be an overwhelm-
tion in reimbursement for chemotherapy, patients may be ing burden on outpatient nurses, who must constantly eld
required to receive their treatment at an infusion center, along telephone calls and faxes, ll out disability or family leave
with patients receiving antibiotic therapy, inhalation therapy, paperwork, and communicate with caregivers in the commu-
and other treatments, far from the cancer center. Although this nity. Balancing the telephone calls that urgently need attention
is a more cost-efcient way to provide parenteral therapy, it with those of a more bureaucratic nature is a signicant prob-
offers less continuity of care over time than does having out- lem in many practices. Keeping track of what is happening
patient cancer center nurses provide all care, from diagnosis with outpatients is difcult in the best-staffed clinics and may
through active treatment and on to palliative care. be overlooked entirely in poorly staffed settings. Return visits
Although registered nurses in ofce settings increasingly to the clinic are vital for evaluating treatment outcomes,
are being replaced by nonlicensed personnel, the increase in assessing ongoing needs of patients, and effectively managing
the use of nurse practitioners as physician extenders in outpa- available resources. If clients are unable to travel to the clinic,
tient care is a positive development.7,8 These advanced practice provider visits to a nursing home, or timely referral to home
nurses can enable same-day ofce visits for emergencies or health care with a focus on continuity of the treatment plan is
symptoms that require acute management. Many clinics use very important. Incorporating all aspects of the team across
nurse practitioners to take histories and perform physical inpatient, outpatient, and home care facilitates the best in pal-
examinations for routine admissions to the hospital, while the liative care outcomes.
The Outpatient Setting 837
No Pain Mild Discomforting Distressing Horrible Excruciating
Figure 441. Patient waiting room checklist for pain and symptom assessment. The questions
relate to pain and any side effects of analgesicsinformation that can facilitate discussions of
symptom management.
Figure 442. Active treatment versus palliative care,

depicted in a mutually exclusive old model (top) and an
integrated new model (bottom). Source: World Health
Organization (1995), reference 12.
The two major benets of the outpatient setting are a more patient and family in the outpatient setting. To save time and
intimate, structured environment and more time to develop obtain preliminary information, patients may be given a stan-
long-term relationships. However, the setting also has disad- dard form to ll out before the examination. This can also help
vantages: fewer registered nurses, the increased burden of narrow down the priority issues for the visit. Increasingly,
gatekeeping, and poor access in busy outpatient practices. Pro- electronic forms are being used; they may be accessed through
viding quality palliative care in the outpatient setting requires a waiting room kiosk or even over the Internet from the patients
creativity and commitment to meeting these challenges. home.
Patients and their families should be educated early about
the importance of symptom assessment and reporting as well
o] as evaluation of treatment efcacy and side effects. Establish-
Integrating Palliative Care into Outpatient Care ing the patient and family as part of the team improves out-
comes. As always, the patients goals of care become the central
A combination of philosophical mission, strategic planning, focus for facilitating optimized palliative care. A sample dia-
and bottom-line pragmatism is necessary to integrate palliative logue is shown in Table 442.
care successfully into the current outpatient medical model Reassessment of pain and symptoms should occur with
(Figure 442). The philosophical mission must come from the new or continuing problems and with a reasonable frequency
institution and the strategic planning from administration, but and method. For example, if a patient with pain level of 7 on a
the practical, day-to-day implementation occurs in the clinical scale of 10 is seen in the ofce for opioid titration, an explicit
practice at the hands of nurses and physicians. Integration of follow-up assessment plan should be established before the
palliative care must begin at the initial visit and continue patient leaves the clinic. Either a clinic nurse should telephone
through the ongoing evaluation and management process. the patient in a day or two, or alternatively, the patient or a
family member should call the ofce nurse if the pain level
does not drop below 4 within a day or two. Patient instructions
Assessment
should be specic, such as, Call the clinic if you go 3 days or
Assessment of the patients and familys goals and preferences longer without having a bowel movement, or Call the clinic
begins during the initial meeting. In most outpatient settings, tomorrow if the antinausea medicine is not working. These
a baseline history, a physical examination, radiographic stud-
ies, and laboratory tests should accompany a review of preven-
tive, general, or specialty health care needs during the rst few Table 441
Sample Dialogue for Opening Advanced Directive
ofce visits. A routine evaluation of current health needs and
Discussion
preventive health issues can be followed by a review of end-of-
life care preferences. If such a discussion is delayed and occurs Nurse: Mrs. Jones, have you thought about what you want us
during a later or exacerbated illness, the patient and family are to do if your heart stops?
much more likely to fear that death is imminent or that the doc- Mrs. Jones: Oh goodness, no. Im healthy as can be.
tor is holding something back. This makes it much more dif- Nurse: Do you have a living will?
cult for all involved to reach clarity concerning the patients
Mrs. Jones: No. I dont like to think about that sort of thing.
goals. A sample clinic conversation is shown in Table 441.
Nurse: Its true that most healthy people dont want to talk
If the patient already has a life-threatening diagnosis, it is
about dying, but we need to discuss all aspects of your health
appropriate early on to establish a routine for assessing pain,
care, including end-of-life care, so that well be able to do the
fatigue, nausea, and other physical, psychological, and func- best job possible of treating you and at the same time
tional parameters. It is critically important to establish a stan- respecting your wishes.
dard approach to assessing the palliative care needs of the
Table 442 Table 444

Sample Dialogue for Goal-Oriented Pain Assessment Sample Dialogue for Check-Back Calls: Examples of
call-back scripts for follow-up on clinic visits
Nurse: Mr. Edwards, in addition to treating your disease, we
also want to be successful at relieving your symptoms. Whats Mrs. Edwards, this is Jesse from Dr. Jones ofce. Im calling
your pain level today on the 0 to 10 scale? to check back on Mr. Edwards constipation since we
Mr. Edwards: Oh, dont worry about my painits only increased his stool softeners. Has he had a normal bowel
about a 6 today. movement today?
Nurse: You mentioned that your pain is 6 out of 10, but I see Mr. Smith, this is Jesse from Dr. Jones ofce. Im calling to
that you havent been taking as much pain medicine as the check back on your nausea. Is that antinausea medicine
doctor has ordered for you. What level of pain relief would be working for you?
your goal?
Mr. Edwards: Well, it would be nice to be down around a 4,
but the medicine is so darn expensive that I try not to use it waiting room checklist (see Figure 441) or Things to Report
unless it gets pretty bad. to the Clinic sheet to a medical assistant or clerk for follow-
Nurse: I see . . . your goal would be to get the pain down to a up. As with telephone triage, the caller must be given clear cri-
4 or so if the cost factor wasnt there . . . is that right? Well, teria for what to do with the information obtained (e.g.,
lets ask Dr. Jones if there is a less expensive drug that would document resolved problems, report unresolved problems to
work for you. We could also check to see if the drug company the provider). Criteria for further follow-up can be established
has a program to help out with the cost of medication. so that unresolved symptoms identied by the ofce nurse or
medical assistant at telephone triage lead to notication of the
physician and further revision of the treatment plan. For
example, any new problems should be triaged by a registered
Table 443 nurse or physician. Telephone triage notes can be designed for
Reminder List easy completion, using check-off boxes and circle the symp-
tom documentation styles (Figure 443).
Any new pain
Patients who have a knowledge decit about their medica-
Pain that is constantly above a 5 on a 010 scale, even with tions or treatment regimen require one or more follow-up
your pain medicine
calls from a registered nurse or pharmacist. It is extremely help-
Severe episodes of pain, even with your pain medicine ful to provide the patient with written descriptions of medica-
Stools that are hard and difcult to pass, or if you are tion changes or signicant changes in the plan of care.
moving your bowels only every 2nd or 3rd day or less Some larger institutions have separate palliative care physi-
Feeling very drowsy after taking your medicine cians or nurses who work alongside the primary treatment team
Having bad dreams or seeing things and often are called in if a certain symptom (e.g., such as pain
Nausea, vomiting, or stomachache after taking
consistently >6/10) or a high-risk diagnosis (e.g., amyotrophic
your medicine lateral sclerosis) is present. These specialty teams work most
effectively alongside the primary providers when clear screening
Muscle twitching or jerking
guidelines for engaging the service are in place. This is another
Other: 1) Call the clinic tomorrow if the nausea
area in which the advanced practice nurse often plays a role (i.e.,
medicine is not working
early identication and referral for palliative care services).
2) Call the clinic tomorrow if the pain is New or escalating symptoms require timely response by
still >4/10
the outpatient team. A reasonable time frame should be set for
follow-up of new problems. Ideally, the patient should be seen
instructions may be incorporated into a standard handout for within 12 hours after the onset of new symptomsessentially the
patients and then individualized as needed (Table 443). same day, if possible. This is particularly true for patients with
Because some patients and family members are hesitant to signicant symptom management issues, for whom trips to the
bother the clinic with telephone calls, it is often desirable for emergency room or urgent care center would be extremely tiring
the reassessment telephone call to be initiated by the clinic. These and would result in the patients being evaluated without all per-
reassessment, or check-back, calls can be done by a trained tinent data available. Any patient with signicant new or escalat-
medical assistant or other nonlicensed personnel (Table 444). ing symptoms who is seen in an emergency room should be seen
Although the use of nonlicensed personnel is controversial, it is again in the outpatient setting within 24 to 48 hours. If the
increasingly accepted as part of the priorities for containing spi- patient receives home care or is involved with a hospice, an initial
raling costs. Training in the triage of critical symptom problems evaluation can be done at home, with telephone contact with the
is the key to optimal use of nonlicensed staff. clinic. If home care or hospice care is not in place, an escalation
An organized reminder system for callbacks should be of symptom management problems often is a very good indica-
instituted. One method is to route a copy of the patients last tion that these resources should be initiated immediately.
Figure 443. Example of a telephone triage

toola concise assessment and treatment
progress note designed for telephone
interview for triage of pain and symptoms.
Evaluation and Management and family with whom he or she has developed a relationship
during long-term treatment. In some cases, this concern results
At its core, the outpatient setting is concerned with evaluation in an us or them mentality in which everyone loses. Most
and management (E&M). The E&M codes drive reimbursement providers, even if a hospice physician takes over the primary
and consequently dictate documentation requirements. The responsibility for managing the patients care, do stay involved,
evaluate and treat construct is deeply entrenched in the tradi- if only through periodic telephone follow-up.
tional medical model. However, neither the reimbursement- Many clinicians reject the stark line drawn between active
driven E&M process nor the traditional medical model always treatment and palliative care and successfully merge these con-
supports palliative care. In fact, one of the most persistent cepts in outpatient care. Conceptually, this model was described
problems in palliative care is the hospice as last resort by the World Health Organization.12 The old model depicts
assumption of some providers, which causes referrals from the health care system involvement starting from diagnosis with
outpatient setting to a home care agency within the last days of active treatment and then abruptly, shortly before death,
life and virtually never before suspension of active treatment. switching to a purely palliative model. The new model depicts
This late utilization of home health resources is further com- the health care system using active and palliative care concur-
plicated by the crackdown on Medicare fraud in home health rently, with a primarily active treatment focus at diagnosis,
care and has resulted in drastically reduced home care stays integration along the trajectory, and a primarily palliative focus
across the country. at death (see Fig. 442).
Some providers also worry that hospice care will take over Take, as an example, an elderly gentleman with metastatic
and that the patient will not have access to appropriate medical prostate cancer who has begun hospice care and has developed
oversight. In such cases, the provider essentially loses a patient pain, rated as 9 on a scale of 0 to 10, that begins in his back and
Figure 444. The Du Pen Cancer Pain Algorithman algorithm designed to aid decision-
making in outpatient management of cancer pain. Use of this algorithm in clinical trials pro-
duced a signicant (P < 0.02) reduction from usual pain levels. (Source: Adapted from Du Pen S,
Du Pen A. Cancer Pain Algorithm Reference Guide. Seattle: Du Pen, Inc., 1998:610. 1998
shoots down his legs. His opioid therapy has been increased the key stops along the highway. These stops may be follow-up
aggressively over the past week, and he is now somnolent diagnostic studies, interdisciplinary consultations, hospice
between periods of extreme pain. His wife also notices he referrals, or a variety of other patient-specic services. This
needs more help getting out of bed because his legs wont model works well for outpatient services that, in general, are
hold him up. The patient and his wife explain that their goals disconnected one from another and that might be overlooked
are to keep his pain under control and to keep him as func- under strained resources. The navigator works from critical
tional as possible. This patient may benet dramatically from pathways, or algorithms, and provides feedback to the physi-
steroids and radiation to reduce pain and save the functions cian weekly.
of his lower extremities, bowel, and bladder, even though he is
receiving hospice care. In such situations, a very clear under-
standing of the patients and familys goals of care, well o]
dened and known to both outpatient providers and home Critical Building Blocks for Outpatient
care or hospice care providers, facilitates the best possible Palliative Care
outcomes.
Treatment algorithms or protocols can promote efciency in A number of critical elements provide an excellent frame-
the clinic and enhance outcomes. These tools can be successfully work for integrating basic palliative care concepts into almost
put into place and implemented by both clinic nurses and any outpatient setting. Improving provider accessibility to
home care or hospice care nurses. One such algorithm was patients and caregivers, promoting active listening by all staff,
used in outpatient oncology and resulted in improved pain providing a sense of control, and continuously assessing psy-
management.13 The Cancer Pain Algorithm is a decision tree chological and spiritual distress of patients and their families
model for pain treatment that was developed as a practical are the building blocks to successful outpatient palliative
interpretation of the Agency for Health Care Policy and care.1416
Research Guidelines for Cancer Pain Management. The algo-
rithm consists of a bulleted set of analgesic guiding princi- Accessibility
ples for use with opioids, NSAIDs, tricyclic antidepressants,
anticonvulsants and addresses drug side effects. For example, In the outpatient setting, accessibility is critical to the palliative
the statement Titrate to efcacy or side effects is an underly- care of patients. Having 24-hour support available to patients
ing principle throughout the algorithm. Drug choice decisions and their caregivers helps reduce anxiety and, when necessary,
depend on pain assessment data. The ow chart directs the facilitates identication of after-hours problems that need
oncology nurse or oncologist to side effect protocols, equianal- immediate attention, such as escalating pain or shortness of
gesic conversion charts, and a primer for intractable pain. breath.17 Accessibility is not, of course, only an after-hours
Figure 444 represents the high level algorithm decision- issue. A well-organized telephone triage system is necessary to
making ow chart. Etiology and location correlate the pain provide access during regular clinic hours.18 The clerk or other
with its known tumor or treatment-related source or indicate nonlicensed personnel who answer the telephone should
the need for further diagnostic work-up. Pain intensity is receive very clear instructions on how to distinguish problems
based on self-report on a scale from 0 to 10, where 0 is no pain that need immediate attention. For example, billing questions
and 10 is the worst pain imaginable. Pain character is divided and insurance issues receive callbacks, whereas pain, shortness
into nociceptive versus neuropathic components; the charac- of breath, and changes in level of consciousness require a nurse
ter of the pain is the primary variable to direct the choice of or physician to take the call. These criteria should be agreed
nonopioid or coanalgesic therapies. The frequency and method upon by all and followed consistently. Calls that require high-
of reassessment are outlined for the practitioner based on the level triage should be handled by trained nurses armed with
results of the last pain assessment contact. An algorithm refer- protocols and standing orders that have been approved by the
ence tool contains drug-specic content (e.g., titration param- patients physician. The triage system should include proce-
eters, side effect protocols) and a number of highly specic ow dures for bringing patients into the clinic for same-day evalu-
charts. The algorithm process is intended as a team effort, rely- ation or for admission to the hospital.19 Such a system has
ing on the network of physician, clinic nurse, home care nurse, three main benets: (1) the patient sees the nurse as a qualied
and family caregiver as a cohesive outpatient unit, all applying member of the team who is available and ready to assist;
the principles of the algorithm as they relate to the individual (2) the patient and family caregivers become more condent
patient. in making adjustments to medications for pain or symptom
Another concept now being used in outpatient care is that management, and (3) telephoning allows the nurse to reassess,
of the primary nurse navigator. The navigator takes the con- reassure, and reinforce the teaching that has taken place (see
cept of case manager a step further, in the sense of acting as a Figure 443).
learned guide rather than a plan manager. The navigator is Advanced practice nurses clearly improve accessibility
responsible for tracking the course of the patients care for patients undergoing palliative care management.8 Many
through the myriad of services. A treatment plan becomes a nurse practitioners share on-call responsibilities with physi-
road atlas, and the nurse navigator steers the patients care to cians, thereby alleviating some of the workload that 24-hour
accessibility requires. Flexible scheduling of advanced practice Providing a Sense of Control

nurses can allow for same-day work-ins, nursing home visits,
or home visits, as circumstances require. Helping chronically and terminally ill patients regain a sense
of control is a key element in managing the helplessness many
Active Listening patients experience. Within the acute and long-term care set-
tings, power symbols exist that shift the locus of control
Active listening is a key element to effective communication away from the patient.22 These symbols include the sea of
among patients, the outpatient care team, and the patients white coats, high-tech equipment, hospital beds that place
families.20 This component of palliative care helps to support patients below their professional caregivers, and a general lack
patients and families who feel physically and emotionally iso- of privacy. Interventions that can promote a sense of control
lated or overwhelmed by a terminal illness. Active listening in the outpatient setting include allowing patients to remain
also leads to more efcient use of time and a stronger relation- dressed during most ofce calls, at least until an examination
ship with the client,16 which are important factors in the out- is required; reducing the clinical, white-coat formality; and
patient setting, both during face-to-face interactions and over providing a safe, nonthreatening, private place for meetings
the telephone. The astute listener simultaneously watches for with patients and their families. These accommodations return
nonverbal clues, shows empathy, and assesses the patients and a sense of control and dignity to the patient with a terminal ill-
familys knowledge base. In the outpatient setting, staff become ness and promote health and well-being.14 Another critical
more familiar with the patient and family over months and component of providing a sense of control is having an active
perhaps years, which makes the process of listening actively patient education component. Giving patients and families
and with empathy easier. This ability and opportunity to make the knowledge tools that they need to make decisions is a great
assessments over a long period is unique to the outpatient empowerment. Practical information regarding how to nego-
setting. tiate the system, how to get help after hours, and how to com-
Oncology nurses are sometimes comfortable opening a municate with health care professionals in a way that gets
dialogue with patients about pain, fatigue, weight loss, and them the information they need are all important components
appetite but less comfortable handling conversations about of patient education.
death and dying or loss.21 If a formerly hopeful patient with a
ghter attitude responds with I dont think I can do this Tuning In to Distress
anymore, the active listener understands that a transition is
occurring. Time must be set aside for this patient, either imme- Psychological and spiritual health are often profoundly affected
diately or with a plan for a follow-up telephone call or family by life-threatening illness. In fact, patients with chronic and
conference. Time spent proactively facilitating these transi- terminal illnesses display a high incidence of frank psychiatric
tions almost always saves crisis-induced time spent later in the morbidity, documented in several studies to range from 40%
patients course. to 53%.23,24 Common psychiatric diagnoses among the termi-
Another critical component of active listening involves nally ill include delirium, amnesia, major depression, and anx-
identifying barriers to effective palliative care. The classic iety.24 However, many patients with signicant symptoms
example of a barrier to care is the fear of opioid addiction. A of anxiety, depression, and anger do not qualify as having a
clinic nurse often rst identies the patients or family mem- major psychiatric illness. These symptoms have been described
bers concern about taking opioids. It is important to discuss throughout the palliative care literature as distress.15,24 Identi-
this attitudinal barrier early and frequently. Another barrier fying distress early in the palliative care continuum allows for
to pain management at the end of life is the belief that using early intervention, prevention of comorbid psychological prob-
pain medications hastens death. Because of this belief, family lems, and improved quality of life.
members may resist optimizing opioids and adjuvants at the Easy-to-use, inexpensive, brief, noninvasive, and generally
end of life. In addition to verbal instructions at the time of the well accepted self-reporting questionnaires can be used in the
clinic visits, written materials on the rationale and role of outpatient setting.25,26 Two good examples are the Hospital
symptom management in end-of-life care can be extremely Anxiety and Depression Scale (HAD)28 and the Distress Ther-
helpful. mometer.26,27 The HAD consists of 14 questions to which the
Another issue that is frequently present and often requires client answers yes or no. This tool omits somatic complaints
active facilitation by clinic staff is the social context of care. and focuses on questions that can help differentiate anxiety
The cost of care is an increasing concern and is an area that and depression. Despite its title, it has also been successfully
patients and families are frequently uncomfortable discussing. used in the outpatient setting.25
This often results in conicts that are identied only late in the The Distress Thermometer has been tested in men with
course of care. Distressing issues may arise concerning long- prostate cancer.26,27 It consists of a visual analogue scale made
term care and, particularly, the distribution of nancial sup- to look like a thermometer, with the bottom of the thermome-
port and caregiving responsibilities among family members. ter reading 1, or no distress; 5 being moderate distress, and 10
Whenever possible, prompt initiation of family conferences or (at the top of the thermometer) being extreme distress. Dis-
referrals to social workers are advisable. tress is dened in a generic sense of unpleasant stress. This is
a simple scale that can be used at the beginning of each ofce nurse in the outpatient setting provide better support to griev-
visit or on a regular basis (e.g., quarterly). Responses can be ing loved ones.
used to open discussions of the symptoms of distress being Often, family members or caregivers are drawn back to the
experienced by a client in the outpatient setting. For example, outpatient setting to say nal good-byes or give gifts of thanks
the clinician may say, I see that youre feeling a moderate to staff members who may have become as close as family to
amount of distress. Can we talk about what youre feeling? the patient and caregivers. Staff should be prepared for this
Spiritual distress can be equally devastating to the patient visit by being informed of the patients death. Work should
and family. Hearing What did I do to deserve this? or How stop for a moment to embrace the returning family members
could God let this happen to my husband? from a patient or and give them time to tell the story of the death and share feel-
family member is a cue that spiritual support is needed. Some ings of grief and joyful memories of the deceased. Gifts or pic-
health care systems have chaplains available in the outpatient tures brought by the family should be accepted graciously.
setting. Many churches and synagogues provide outreach min- Many ofces take time out each month to send cards to fami-
istries to the gravely ill. Other nontraditional means of spiritual lies of patients who have died.
support include meditation and rituals to explore the meaning Staff of the outpatient clinic, the front desk receptionist, the
of events. Whenever possible, the clinic should be given a list medical assistant, the nurse, and the physician may experience
of community resources for spiritual support. grief after the loss of a patient. Often, staff require support
through the deaths of patients dear to them. It is important to
allow for special opportunities to celebrate the lives and
o] mourn the deaths of these patients. Attending funerals, keep-
The Three Cs of Outpatient Palliative Care: ing scrapbooks, and having occasional symbolic tributes to
Cooperation, Communication, and Closure patients can help staff through the grieving process. Occasion-
ally, it may be helpful to provide professional counseling or to
At the heart of palliative care in the outpatient setting are the send staff members on a retreat, where feelings regarding
three concepts of cooperation, communication, and closure. death and loss can be shared. Caregivers, as well as family and
The concepts of cooperation and communication are woven friends, need closure when death comes. In the outpatient set-
throughout this chapter. The outpatient setting is the site of ting this affords all who have experienced the loss support on
cooperation among patient, family, and outpatient staff. This the journey toward healing.
cooperation expands to the agencies within the community
that are caring for the patient. This may include home health
care nurses, long-term care staff, local pharmacists, neighbors o]
and friends of the client, and the local church. The physician Summary
and advanced practice nurses cooperate to provide easy access
to care. The specialist and primary care physician, who both The outpatient setting has both advantages and disadvantages.
often monitor the patient in the outpatient setting, cooperate. As more and more patients with end-stage disease choose to
Care in the outpatient setting is not provided in isolation, but remain in their homes, the outpatient clinic has become the
by a well coordinated and dedicated community team. main point of contact for care and coordination of resources.
At the heart of this cooperation is good communication. The outpatient clinic staff act as gatekeepers, maintaining checks
Communication begins with active listening, fostered in the and balances on the home health care system or the long-term
outpatient setting. Efcient and accurate documentation of care facility. Relationships are developed over many years, cre-
patient teaching, telephone calls, and interventions is the key to ating a sense of trust that fosters the holistic care that is at the
continuity of care. A variety of tools have been developed for heart of palliative medicine.
use in the outpatient setting to improve this communication. Strategies for providing palliative care in this setting apply
Not yet addressed, but also important in the outpatient set- to all diseases. The concepts of active listening, promoting
ting, is closure. Bereavement is an issue for nurses, physicians, patient control, assessing for distress, and promoting access to
and staff in the outpatient setting.29 As patients become sicker care all improve the delivery of palliative care in the outpatient
and eventually homebound, the outpatient staff is no longer able clinic. The use of nurse-staffed telephone triage systems, nurse
to see the patients, despite being in close contact with family and practitioners, and tools for assessing palliative care needs ben-
home care staff over the telephone. In many cases, this early sep- ets both the terminally ill patient and the patient with advanced
aration from the patient complicates the ability of the outpatient chronic disease. Care algorithms and critical pathways assist
staff to come to closure with what often has been a long-term staff in implementing research-based interventions to prevent
relationship with the patient. This abrupt loss of connection can suffering and promote quality of life. Finally, the three Cs of
be a signicant source of bereavement for staff. outpatient palliative care emphasize the necessity of coordina-
Outpatient nurses may have had years to assess the family tion, communication, and closure.
or caregivers previous experiences with death, the support There is perhaps a fourth quality needed when caring for
available, and the coping resources of those who have suffered chronically or terminally ill clients in the outpatient setting
the loss. This familiarity with the family or caregiver helps the commitment. Through a commitment to alleviate suffering
and promote quality of life, caregivers in the outpatient setting 14. Fryback PB, Reinert BR. Facilitating health in people with ter-
assist patients in nding physical, psychological, and spiritual minal diagnoses by encouraging a sense of control. Med Surg
wellness, even at the end of the disease trajectory. Nurs 1993;2:197201.
15. Jacobsen PB, Brietbach W. Psychosocial aspects of palliative care.
Cancer Control 1996;3:214222.
16. Straka DA. Are you listening? Have you heard? Adv Pract Nurs Q
references 1997;3:8081.
17. Brown C. Health care system changes and nursing. ABNF J
1. Fitch MI, Mings D. Cancer Nursing in Ontario: Dening nurs- 1994;5:4142.
ing roles. Can Oncol Nurs J 2003;13:2844. 18. Preston FA. Telephone triage. Clin J Oncol Nurs. 2000;4:294296.
2. Aranda S. Silent voices, hidden practices: Exploring undiscovered 19. Stacey D, Fawcett L. Telephone triage: An important role for
aspects of cancer nursing. Int J Palliat Nurs 2001;7:178185. oncology nurses. Can Oncol Nurs J 1997;7:178179.
3. Cox K, Wilson E. Follow-up for people with cancer: Nurse-led 20. Srnka QM, Ryan MR. Active listening: A key to effective com-
services and telephone interventions. J Adv Nurs 2003;43:5161. munication. Am Pharm 1993;NS33(9):4346.
4. Skalla KA, Bakitas M, Furstenberg CT, Ahles T, Henderson JV. 21. Sivesind D, Parker PA, Cohen L, Demoor C, Bumbaugh M,
Patients need for information about cancer therapy. Oncol Nurs Throckmorton T, Volker DL, Baile WF. Communicating with
Forum 2004;31:313319. patients in cancer care: What areas do nurses nd most chal-
5. The role of unlicensed assistive personnel in cancer care. Oncol- lenging? J Cancer Educ 2003;18:202209.
ogy Nursing Society. Oncol Nurs Forum 2001;28:17. 22. Ebersol P, Hess P. Crisis and stress management. In: Ebersol P,
6. OLeary J, Williamson J. Meeting the challenges in todays outpa- Hess P, eds. Toward Healthy Aging, 5th ed. St. Louis: Mosby, 1998,
tient oncology setting: A case study. J Oncol Manage 2003;12:2426. pp 676701.
7. Bush NJ, Watters T. The emerging role of the oncology nurse 23. Derogatis LR, Morrow GR, Fetting J, Penman D, Piassetsky S,
practitioner: A collaborative model within the private practice Schmale AM, Henrichs M, Carnicke CL Jr. The prevelance of
setting. Oncol Nurs Forum 2001;28:14251431. psychiatric disorders among cancer patients. JAMA 1983;249:
8. Jones A, Ironside V, Jameson G, Leslie M, Sullivan C. A job 751757.
description for the oncology NP. Nurse Pract 2002;27:61. 24. Minagawa H, Uchitomi Y, Vamawaki S, Ishitahi K. Psychiatric
9. Sivesind D, Parker PA, Cohen L, Demoor C, Bumbaugh M, morbidity in terminally ill cancer patients: A prospective study.
Throckmorton T, Volker DL, Baile WF. Communicating with Cancer 1996;78:11311137.
patients in cancer care: What areas do nurses nd most chal- 25. Moorey S, Greer S, Watson M, Gorman C, Rowden L, Tunmore
lenging? J Cancer Educ 2003;18:202209. R, Robertson B, Bliss J. The factor structure and factor stability
10. Lynch MP, Cope DG, Murphy-Ende K. Advanced practice issues: of the Hospital Anxiety and Depression Scale in patients with
Results of the ONS Advanced Practice Nursing survey. Oncol cancer. Br J Psychiatry 1991;158:255259.
Nurs Forum 2001;28:15211530. 26. Roth AJ, Kornblith AB, Batel-Copel L, Peabody E, Scher HI, Hol-
11. Hamric AB, Worley D, Lindebak S, Jaubert S. Outcomes associ- land JC. Rapid screening for psychologic distress in men with
ated with advanced nursing practice prescriptive authority. J Am prostate carcinoma: A pilot study. Cancer 1998;82:19041908.
Acad Nurse Pract 1998;10:113118. 27. NCCN practice guidelines for the management of psychosocial
12. World Health Organization. Cancer Pain Relief and Palliative distress. National Comprehensive Cancer Network. Oncology
Care, 2nd ed. Geneva: World Health Organization, 1995. (Hunting) 1999;13(5A):113147.
13. Du Pen SL, Du Pen AR, Polissar N, Hansberry J, Miller-Kraybill 28. Zigmond AS, Snaith RP. The hospital anxiety and depression
B, Stillman M, Panke J, Everly R, Syrjala K. Implementing guide- scale. Acta Psychiatr Scand 1983;67:361370.
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45o] Kathleen Michael
Rehabilitation and Palliative Care

I may have cancer, but I have a lot of livin to do before I go. I have kids to take care of, a house, a
job. I have faith that these drugs will help and even if I dont live forever, I still have some livin
to do now and a lot of things to take care of. So I want everything they got to make me strong.
A patient
Key Points Even when it is not reasonable to expect cure or reversal of

Rehabilitation principles are applicable to palliative care to disease processes, or to restore a previous level of function-
enhance quality of life. ing and independence, a rehabilitative approach to nursing
Interdisciplinary care is a key concept in rehabilitation. care adds quality to the experience of lifes completion.
Rehabilitation in palliative care can prevent disability Grounded in respect for each unique patient, rehabilitation
and complications. nurses address palliative and end-of life care with concern
for preserving hope, human dignity, and autonomy. They
involve social, spiritual, and functional support systems.
Rehabilitation nursing interventions are designed to help
patients and families make the most out of each day in the
context of the disease trajectory. The language of rehabilita-
tion nursing is a language shared with those who practice
palliative care.
Rehabilitation nurses work with the concepts of indepen-
dence and interdependence, self-care, coping, access, and qual-
ity of life, skillfully weaving them into the assessment, planning,
implementation, and evaluation of nursing care.1,2 Although
the focus is on function, fundamental to this practice is the ac-
ceptance of varieties of life experiences, including those at
lifes end.
This chapter applies concepts of rehabilitation to palliative
care across settings. Case studies are presented to demonstrate
the application of palliative care to patients, even those with
life-threatening illnesses. Finally, numerous strategies are dis-
cussed for use of rehabilitation techniques to prevent disabil-
ity and complications in advanced disease.
o]
Rehabilitation Nursing
Rehabilitation nursing in any context concerns itself with

adaptation. As life proceeds to its end, adaptation to a new
state allows beings to remain whole: to interact with their
environments, to experience human relationships, and to
achieve personally meaningful goals. Rehabilitation nurses
find themselves at work in every phase of growth, development,
847
and dying, as individuals strive to adapt across the continuum situations in pediatric rehabilitation in which palliative care
of life. comes into play, and efforts are directed toward enhancing
Rehabilitation nurses care for persons with incurable pro- the normal function of both patient and family through the
gressive disease states in a variety of settings. Whether care is course of disease. For example, the family members of a child
patient-, provider-, or facility-centered, the merging of reha- with progressive neuromuscular disease may learn how to
bilitation and palliative nursing principles is evident. use adaptive devices to position the child in a wheelchair for
Acute comprehensive inpatient rehabilitation units are set up comfort and social interaction as well as for physiological
in such a way that complex medical-surgical issues may be function.
managed concurrently with the functional processes of com- In the insurance industry and managed care systems, reha-
prehensive rehabilitation.3 For example, patients with metasta- bilitation nurses have the opportunity to advocate for the
tic cancer affecting their bones may have signicant care needs needs of persons with disease or disability and to reduce barri-
related to mobility and activities of daily living, well addressed ers to their access to care and resources. Near the end of a ter-
in an inpatient rehabilitation setting. minal disease course, planning and resource management are
For many patients with terminal illness, the transition to essential to ensure optimal care without undue economic and
an acute rehabilitation unit represents a crucial point in their emotional burdens to families. Case management is an
healthcare experience. It is a time when the future comes into expanding practice area for rehabilitation nurses, usually with
focus, and goals are dened based on the likely disease pro- multidisciplinary relationships. Because palliative care needs
gression. Sometimes a short stay on an inpatient rehabilita- are unique to individuals and require coordination of the care
tion unit makes it possible for patients to return to a home across disciplines, usual or episodic patterns of delivery and
setting, because of the gains in independent function that resource use may prove inadequate. The implementation of
may be realized. Patients and family members may begin to care pathways in palliative care requires careful and compas-
face limited prognoses, decline in abilities, and changes in sionate guidance and evaluation, tailored to meet individual
roles. Through an interdisciplinary therapeutic process, care strengths, abilities, needs and preferences.3,4
needs are claried, and skills and adaptation strategies are Finally, care of dying patients occurs frequently at home.
taught to patients and those who will care for them outside of Successful end-of-life care at home is the preference of many
the hospital. patients and families. Such care depends on skill, concern,
Subacute rehabilitation facilities provide additional therapy keen assessment, and creative problem-solving. For the rea-
activities, such as physical, occupational, or speech therapy, sons shown in each setting, rehabilitation nursing is well
based on patient need, endurance, and tolerance. The pacing suited to this charge.
and amount of therapy are gauged according to individualized
goals. As in comprehensive inpatient rehabilitation units, the
aim is to facilitate improved physical function and as much in- o]
dependence as possible, even as the disease process moves the Rehabilitation Nursing and Palliative Care
patient toward death. For example, patients with advanced
disease who are too frail to participate in a full acute rehabili- Rehabilitation nursing adds value in the arena of palliative
tation program may benet from the slower-paced rehabilita- care. As future health care services center on needs, prefer-
tion of a subacute setting. ences, and informed consent of patients and families in our
Long-term care settings, such as skilled nursing facilities, are society, there is less emphasis on cure, illness, paternalism, and
often places where lives are completed. Specialized geriatric prescription. More attention is directed to self-care and client
facilities focus on the care needs of aging persons, often requir- participation, holistic wellness, primary care and prevention,
ing specialized rehabilitation interventions. In both of these and the quality attributes of care as dened by the consumer.1
settings, rehabilitation nurses may plan and direct care deliv- Patient/family-centered care is clearly appropriate for the
ery and make sure that patient and family concerns are kept in unique experience of dying. Enabling a kind of wellness to
the forefront. Attention is paid to optimizing function and exist even at the point of death, such as the experience of a
self-care, as well as addressing physical care issues. good death, ts with the rehabilitation philosophy. Many
Hospice settings may also provide a venue for a rehabi- rehabilitation nursing actions center on supporting physiolog-
litative approach to end-of-life care. Careful planning of care ical function and preventing complications, goals that are still
to take into account limitations, yet promote function and appropriate at the end of life. Finally, rehabilitation has long
autonomy, is a key factor in smoothing the transition to an been concerned with understanding and measuring quality of
inevitable death. Rehabilitative techniques and strategies make life, whether related to physical, psychosocial, or spiritual
it easier for caregivers to manage increasing decits, thereby domains.
protecting patient comfort and dignity through the dying The real value of a rehabilitative approach to the nursing
process. care of persons with declining health states lies in the founda-
Pediatric rehabilitation is focused on guiding the develop- tions of rehabilitation nursing practice. As dened by the
ment of children to minimize disability and handicap that Association of Rehabilitation Nurses in 2004,4a rehabilitation
may result from physical or cognitive impairment. There are nurses
Rehabilitation and Palliative Care 849
Attend to the full range of human experiences and synchrony of the roles and responsibilities of each member.
responses to health and illness When the rehabilitation team works in synergy, it serves patients
Deal with families coping with lifelong issues and families across the continuum of life.
Provide a holistic approach to care
Facilitate team dynamics and integration
Educate patients and their families to help them o]
control and manage a wide range of challenges Conceptual Framework
associated with chronic illness or disability
Form partnerships with patients and other health It is a common view that rehabilitation has a place somewhere
care providers to attain the best possible outcomes between curative and palliative care.5 Rehabilitation seems not
really to t with curative processes, where care issues resolve
The hallmark of rehabilitation is interdisciplinary collabo-
with specic treatments and patients levels of function and in-
ration. The synergy of collaboration enhances the value of
dependence ultimately return to normal. Nor does rehabilita-
rehabilitation nursing interventions and ensures that patient
tion seem in keeping with the irrevocable progress toward
needs are addressed from a variety of perspectives. Typically,
death, because rehabilitation implies a return to a previous way
the rehabilitation team consists of physicians with specialized
of living through adaptation. However, rehabilitation has con-
training in Physical Medicine and Rehabilitation; rehabilitation
cerns at each point of the continuum from wellness to death. In
nurses; physical, occupational, speech, respiratory, and recre-
wellness, the concern is to prevent health problems and reduce
ation therapists; exercise physiologists; dietitians; social work-
factors that might lead to illness and disability. At the end of
ers; and others as required to address particular needs (Table
life, the concern is to promote autonomy and dignity by
451). Effective teamwork requires mutual understanding and
enhancing function and independence as much as possible.
To conceptualize how rehabilitation nursing ts with care
at the end of life, it is helpful to consider a diagrammatic
Table 451 representation (Figure 451). In this diagram, curative and pal-
Role of Interdisciplinary Rehabilitation liative care are pictured as two discrete spheres. Rehabilitation
Team Members overlaps both substantially. In each sphere there is a place for
rehabilitation. At the junction between curative and palliative
Physiatrists: Direct the rehabilitation team in providing
care, rehabilitation may nd its greatest impact.
comprehensive, integrated, patient-centered care
Rehabilitation nurses: Address physical care needs, such as
mobility, daily living skills, bowel and bladder care, skin care,
medications, and pain management, and coordinate the o]
overall rehabilitation process Rehabilitation Principles Applied to Palliative Care
Physical therapists: Address strength, endurance, mobility,
activity level, equipment needs, range of motion, balance and The rehabilitation of patients with palliative care needs should
stability, and education about ongoing exercise programs to begin as early as possible. As soon as functional decits are
facilitate independent function observed or anticipated, appropriate consultation with mem-
Occupational therapists: Address energy conservation needs, bers of the rehabilitation team should be initiated. Certain
upper-extremity strength and function, self-care and home diagnoses, such as progressive neuromuscular diseases; malig-
management skills, need for assistive devices, perceptual nancies affecting the brain, spinal cord, or skeletal system;
evaluation and guidance, and education for adaptation needs
Speech/language pathologists: Address expressive and Figure 451. A conceptual framework for curative, palliative, and
receptive communication needs as well as eating and rehabilitative care.
swallowing issues
Social workers: Address home care and extended care needs;
provide patient and family with counseling and resources.
Rehabilitation psychologists: Address complex emotional
and psychological needs of patients and families, guide the
team in psychosocial care, and provide comprehensive
psychological testing
Vocational counselors: Address concerns and options related
to school or work
Recreation therapists: Address adaptation of leisure skills,
recreational activities, socialization, stress management,
establishment of therapeutic environment, and enhancement
Rehabilitative Palliative
of normalization Curative Care
Care Care
organ failure; and many other conditions that result in func- Initially, Ms. W required prolonged ventilatory support.
tional impairments, should trigger mobilization of the reha- She struggled with infection and rejection of her new lungs.
bilitation team. She experienced shock, sepsis, distress; her records thickened
The goals of rehabilitation are to prevent secondary disabil- with stories of heroics and near misses, of technology, of mir-
ity, to enhance the functions of both affected and unaffected acles, of persistent argument with fate. She had established
systems, and to help patients adapt to their physical and social with her family that she would want everything possible done
environments by means of physical restoration and adaptive to preserve her life, and thus the critical balancing act went
devices.6 on for months. Just as her condition seemed to be stabilizing,
Rehabilitation nursing strategies focus on she had a massive stroke, resulting in dense hemiplegia and
loss of speech/language function.
Caring for whole persons in their social and physical
She was admitted to the inpatient rehabilitation medicine
environments
service to focus on mobility, self-care, and speech functions
Preventing secondary disability
in order to help her to return home with her family. She pro-
Enhancing function of both affected and unaffected
gressed very slowly, with numerous complications related to
systems
her pulmonary status, immunosuppression, and cardiovascu-
Facilitating use of adaptive strategies
lar deterioration.
Promoting quality of life
A second stroke left her with even more-limited language
To illustrate the rehabilitation strategies as they may be and cognitive function. She required maximum assistance for
applied in actual palliative nursing care situations, some case all activities of daily living, and she ceased to make progress
studies are offered. The stories serve to illuminate the role of toward her rehabilitation goals. Her pulmonary function
rehabilitation nursing in palliative care and represent issues in declined. Her family recognized that they would not be able
common with many rehabilitation patients. to meet her care needs at home. Further evaluation of her
lungs revealed that she had developed a lymphoma, for
which, in her case, no treatment could be offered. Her prog-
o] nosis plummeted, with the likelihood of death in a matter of
Caring for Whole Persons in Their Social weeks.
and Physical Environments The focus of her rehabilitation care shifted. No longer
would it be reasonable to expect her to reach the level of in-
Appreciating each person as a unique individual is extremely dependence she would need to return home. A rigorous exer-
important to the rehabilitation process. Whereas it may be evi- cise program was not going to change the trajectory of her
dent to rehabilitation professionals that certain goals and disease and in fact might sap her energies and contribute to
interventions would suit the patients needs, even more impor- more frustration and discomfort.
tant is nding congruence with the patients own perceived and By talking with family and friends, the rehabilitation team
stated goals and values. learned that Ms. W was strong-willed, stubborn, difcult, but
deeply loved. She was seen as the matriarch of the family. For
most of her adult life, she had balanced her responsibilities as
9=
a single parent with her work as a postal clerk. She was char-
case study
acterized as determined and cantankerous, impatient, critical,
Edna W, a 60-Year-Old Woman with a Lung Transplant
and quick to frustrate. Her family was close and extremely
With a history of rapidly worsening chronic obstructive pul- important to her. She had a wide circle of friends. Her four
monary disease, 60-year-old Edna W was faced with few sons took turns visiting her in the hospital and sincerely
options. As every breath became a struggle, she wondered wanted to get her back home again.
how she could go on with her life and whether it was worth With these facts in mind, the rehabilitation team designed
continuing the ght. She had already lost so much of what communications and interventions that took into account
was important to her: mobility, independence, and social the personal traits and values that were particular to Ms. W.
relationships. Now she found herself homebound, exhausted, They knew that she would have difculty tolerating frustra-
and unable to carry on even a telephone conversation with tion. They knew that she would need to feel in control as
friends and family she so cherished. much as possible. They also knew that involvement of her
After much consultation and deliberation, she agreed that family and friends would be essential. They anticipated the
lung transplantation was the only course of treatment that effects of prolonged stress on the family unit and recognized
would afford her the function and independence she believed the profound loss the family would sustain as her life con-
made her life worthwhile. She received the transplanted lungs cluded.
after a relatively short wait. But her expectations of returning Rehabilitation nursing actions focused rst on communi-
to wellness were not to be fullled. Ms. W began an extraor- cation. Because of her dense aphasia, she was unable to
dinarily complicated postoperative course and a journey that verbalize her thoughts or feelings. Instead, she perseverated
would lead her to a lifes end on which she had not planned. on one word, growing increasingly agitated when people
were unable to understand her. A speech therapist was 9=

involved in setting up nonverbal methods of communica- case study
tion, such as picture boards. As the nursing staff worked JB, a Man with Amyotrophic Lateral Sclerosis
with Ms. W, they tuned into behavioral cues and expressions.
JB knew his days were numbered, irrevocably ticking away
Family members also helped in the interpretation of her
with the advance of his amyotrophic lateral sclerosis. Bit
attempts to communicate. Strategies for communication
by bit, his body functions eroded. Weakness began in his
included
lower extremities, then spread to his trunk and upper
Direct eye contact extremities. He was troubled with spasticity, which soon
Relaxed, unhurried approach made ambulation almost impossible. He depended on his
Slow, distinct phrases in normal tone of voice wife to help him with all of his daily living activities but
One thought presented at a time continued to get out each day in his electric wheelchair, to
Time allowed to process information work with the city government on disability policies. When
Gestures to convey and clarify meaning he went on the ventilator to support his breathing, he
likened his health to driving an old truck down a mountain
Efforts were directed toward maintaining her comfort and
road: no way to stop, no way to turn around, nothing to do
dignity. Whenever possible, she was supported in making her
but drive on home.
own choices. Occupational and physical therapies concen-
As JBs disease progressed, he was at risk for the develop-
trated on interventions that would promote her autonomy.
ment of secondary disabilities. Concerns included the poten-
Functional activities, such as dressing, grooming, and eating,
tial development of edema, contractures, and skin
allowed her opportunities to exercise her independence.
breakdown. JB lacked the normal muscular activity that
Access to her physical environment was accomplished
would promote vascular return, and he developed signicant
through the use of adaptive devices and wheelchair mobility
edema in his extremities. Knowing that edema is glue when
skills. As her condition deteriorated, it was more difcult to
it comes to function, rehabilitation nursing actions included
ascertain her desires. Inclusion of family members became
range-of-motion exercises and management of dependent
more important, both for carrying out her wishes as they
edema with compression and elevation.1
knew them and for giving the family the active role in her
Spasticity complicated positioning of JBs limbs. It was
care that they wanted.
important to avoid shortened positions that favored the ex-
Throughout the course of Ms. Ws nal illness, spiritual
ors, because that would allow contractures to occur. Contrac-
and psychosocial support were priorities. With her ability to
tures would further limit his mobility and function, so he and
communicate so severely impaired, her needs for support
his wife were taught a stretching program as well as the use
might have been misunderstood or overlooked. She was sud-
of positioning devices and splints to maintain joints in
denly unable to serve as the source of stability and strength
neutral alignment.
for her family, and roles and expectations were greatly
Because of his impaired mobility, JB was at risk for skin
changed. The rehabilitation nurses, the psychologist, the
breakdown. He enjoyed spending a lot of time in his
social worker, and the chaplain worked together to counsel
wheelchair. Although his sensation was basically intact, he
and care for both patient and family.
was not able to react to the message of skin pressure and
When death came, the family described a mixture of feel-
change his position. JB learned how to shift his weight in
ings of relief, sorrow, and satisfaction. Through their sadness,
the wheel-chair, by either side-to side shifts or tilt-backs.
they recognized the efforts of the rehabilitation team to pre-
A small timer helped remind him of pressure releases every
serve Ms. Ws uniqueness and integrity as a human being.
15 minutes when up in his chair. In addition, a special
Thus, they would remember her.
wheelchair cushion protected bony prominences with
o]
gel pads.
o]
o]
Preventing Secondary Disability
o]
Whatever the disease process, persons in declining states of Enhancing Function of Both Affected and
health are at risk for development of unnecessary complica- Unaffected Systems
tions. Even at the end of life, complications can be prevented,
thereby enhancing a persons comfort, function, indepen- A chief concern in rehabilitative care is enhancing function of
dence, and dignity. Treatment of one body system must not both affected and unaffected body systems, thereby helping
compromise another. For example, patients who are bed bound patients to be as healthy and independent as possible. In pal-
are at risk for development of muscular, vascular, integumen- liative care, many care issues involve the interconnections of
tary, and neurological compromise, which could result in sec- body systems and the need to enlist one function to serve for
ondary disability. another.
9= Managing Fatigue Related to Advancing Disease

case study The rehabilitation team planned Mr. ONeills care to protect
Mr. ONeill, a Man with Metastatic Prostate Cancer his periods of rest throughout the day. They knew that his
Paul ONeill had been a successful attorney for 30 years. A therapy would be more effective and his ability to carry over
burly, loud-spoken Irishman, he prided himself in bringing new learning of functional activities would be better if he were
life and laughter everywhere he went. Although diagnosed in a rested state. His sleepwake cycle was restored as quickly
and treated for prostate cancer, he never slowed the hectic as possible. Occupational therapists taught him strategies for
pace of his law practice or his busy social calendar. In fact, he energy conservation in his activities of daily living, including
had little time to pay attention to the ominous symptoms the use of adaptive devices, planning, and pacing.
that were developing that indicated the advance of
his disease. Pain Control
When he sought medical attention at last, the cancer had Mr. ONeill initially described his pain as always with him, dull
metastasized to his spine, resulting in partial paralysis and and relentless, wearing him down. Rehabilitation nurses evalu-
bowel and bladder impairment. Orthopedic spine surgeons ated his responses in relation to different medications and
attempted to relieve pressure on his spinal cord with the hope dosage schedules, as well as nondrug pain control interventions
of restoring motor and sensory function. However, when such as positioning and relaxation. The most effective method
they performed the surgery, they found that the cancer had of pain control for Mr. ONeill was scheduled doses of long-
spread extensively, and they were unable to signicantly acting morphine, coupled with short-acting doses for break-
improve his spinal cord function. Radiation followed, but it through or procedural pain. This method of pain management
had little effect on the spreading cancer. is frequently used in rehabilitation settings, because it does not
Mr. ONeill was stunned. He could not believe the turn his allow pain to become established, and the patient does not have
life had taken. Suddenly, nothing seemed to work. He had to to experience a certain level of pain and then wait for relief. It
depend on others for the rst time in his life. He felt like also minimizes sedative effects. With his pain under better con-
some kind of freak, unable to move his legs or even manage trol, Mr. ONeill was able to actively participate in his own care
normal bodily functions. His bulky frame became a heavy and make deliberate decisions about his goals.
burden as he tried to relearn life from a wheelchair. He wres-
tled with the unfairness of the situation, nally promising Promoting Mobility and Independence
himself that he would go out in style. He wanted to get Bed Positioning
home as soon as possible, so as not to waste his precious
Positioning and supporting of the body in such a way that
remaining time.
function is preserved and complications are prevented is an
Mr. ONeill spent 12 days on the inpatient rehabilitation
important consideration in mobility. As Mr. ONeills disease
unit, then transitioned to home with continued therapies and
progressed and he experienced increasing weakness and
nursing care. He died 2 months later, at home with his
fatigue, he spent more and more time in bed. Teaching of
family present.
patient and family focused on the techniques of bed mobility
In Mr. ONeills case, several body systems were at risk for
and specic precautions to prevent complications.
complications, although not all were directly affected by the
Supine lying was minimized because of Mr. ONeills high
disease process. Mobility was a critical concern. Bowel and
risk for sacral skin breakdown. Even with a pressure-reducing
bladder management also presented challenges. His neuro-
mattress, back-lying time needed to be restricted. To reduce
logical decits and rapidly progressing disease, combined
shearing forces, the bed was placed in reverse Trendelenburg
with his size and the need to learn new skills from a wheel-
position to raise the head, rather than cranking up just the
chair level, placed him at risk for development of contrac-
head of the bed. Draw sheets were used to move Mr. ONeill,
tures, skin breakdown, and deep vein thrombosis. Problems
again to prevent shearing. Shearing is a force generated when
with bowel and bladder function put him at risk for constipa-
the skin does not move as one with the structures beneath it.
tion, distention, and infection. He experienced severe demor-
Stretching and breakage of capillaries and subcutaneous tis-
alization. In keeping with his wishes, the rehabilitation
sues contributes to the potential for deep skin breakdown.
nursing staff designed a plan for Mr. ONeill and his family to
Positioning of the lower extremities is important to pre-
follow at home.
vent complications such as foot drop, skin breakdown, con-
Priority rehabilitation nursing issues included
tractures, and deep vein thrombosis. When the patient is
Managing fatigue related to advancing disease supine, care should be taken to support the feet in neutral
Pain control position. This can be accomplished by using a footboard or
Promoting mobility and independence box at the end of the bed or by the application of splints.
Managing neurogenic bowel and bladder Derotational splints were placed on Mr. ONeills lower legs
Alleviating social isolation related to the effects of to keep his hips in alignment, to prevent foot-drop contrac-
terminal illness tures, and to reduce the risk of heel breakdown. Range-of-
Anticipatory grieving and spiritual care motion exercises were done at least twice daily.
When Mr. ONeill was side-lying, pillows were employed to Bowel regulation and continence were achieved by imple-
cushion bony prominences and maintain neutral joint posi- menting a classic bowel program routine. Mr. ONeill was
tion. His uppermost leg was brought forward, and the lower especially prone to constipation due to immobility and the
leg was straightened to minimize hip exion contractures. effects of pain medications. The rst intervention was to
Frequently overlooked as a positioning choice, prone lying modify his diet to include more ber and uids. He also took
offers advantages not only of skin pressure relief and reduc- stool softener medication twice daily. His bowel program
tion in hip exion contractures, but also in promoting greater occurred after breakfast each morning, to take advantage of
oxygen exchange.7 Mr. ONeills bed position was alternated the gastrocolic reex. He was assisted to sit upright on a com-
between back, both sides, and prone at least every 2 hours. mode chair. A rectal suppository was inserted, with digital
stimulation at 15-minute intervals to accomplish bowel evac-
Sitting uation. The patient and his wife were taught how to manage
There are many physiological benets of upright posture. this program at home. Although reluctant at rst, Mr. ONeill
Blood pressure, digestive and bowel functions, oxygenation, became resigned to the necessity of this bowel program and
and perception are geared toward being upright. Weight- worked it into his morning routine. His wife, eager to help in
bearing helps to avert skeletal muscle atrophy. Sitting, stand- any way she could, also learned the techniques. Once a regu-
ing, and walking provide for changes in scenery and enhance lar pattern of elimination was established, Mr. ONeill no
the ability to socialize. This was an important consideration longer experienced incontinence.
for Mr. ONeill, who experienced emotional distress at the For bladder management, nursing staff implemented a
social isolation his illness imposed. program of void trials and intermittent catheterization. The
It is important to choose seating that supports the patient, patient learned to manage his own uid intake and to
avoiding surfaces that place pressure on bony prominences. catheterize himself at 4-hour intervals, thereby preventing
A seat that is angled back slightly helps keep the patient from overdistension or incontinence. However, as his disease pro-
sliding forward. Placing the feet on footrests or a small box or gressed, he opted for an indwelling urinary catheter because
stool may add comfort, as may supporting the arms on pil- it was easier for him to manage. There is a continuous need
lows or on a table in front of the patient. Sitting time should to evaluate and individualize rehabilitation goals, and to alter
be limited, based on patient comfort, endurance, and skin tol- goals as patients experience more advanced disease.
erance. Mr. ONeill followed a sitting schedule that increased
by 15 minutes a day until he was able to tolerate about 2 hours Alleviating Social Isolation Related to the
of upright time. That was enough time to carry out many of Effects of Terminal Illness
his personal activities, yet not so much as to overly tire him. With a history of active social involvement, Mr. ONeill had
Planning for Mr. ONeills return home involved careful great difculty with the limitations his disease imposed on
assessment of his equipment needs. Physical and occupa- his energy level and his ability to remain functional. He did
tional therapists conducted a home evaluation to determine not want others to see him as incapacitated in any way. He
how he would manage mobility and self-care activities and did not want to be embarrassed by his failing body. The reha-
what equipment would be appropriate. Family members bilitation team concentrated on solving the physical problems
practiced using equipment and devices under the guidance that could be solved. A recreation therapist assessed his
of the rehabilitation team. The objective was to simplify leisure and avocational interests and prescribed therapeutic
the care as much as possible, while still supporting activities that would build his condence in social situations.
Mr. ONeills active participation in his daily activities. Together, the team helped him learn to navigate around
Examples of home care equipment often used include architectural barriers and helped him to practice new skills
commodes, wheelchairs, sliding boards, Hoyer lifts, adaptive successfully from a wheelchair level.
devices such as reachers, dressing sticks, long-handled
sponges, tub/shower benches, hospital beds, and pressure- Anticipatory Grieving and Spiritual Care
relieving mattresses. Examples of home modications Mr. ONeill concentrated on making plans and settling nan-
include afxing handrails and grab bars, widening doors, cial matters in preparation for his death. He continued to
using raised toilet seats, and installing stair lifts and ramps. set goals for himself and to maintain hope, but the nature
of his goals shifted. Initially, he was concerned with not
Management of Neurogenic Bowel and Bladder becoming a burden to his family and focused on his physical
For Mr. ONeill, the loss of bowel and bladder function was functioning. As his mobility and endurance agged and he
especially distressing. It placed him in a position of dependence had to rely more on others for assistance with basic care
and impinged on his privacy. It reinforced his feelings of isola- needs, he began to change his goals. Some of his stoicism fell
tion and being different. The focus of rehabilitation nursing away. He revealed his feelings more readily and described the
interventions was to mimic the normal physiological rhythms evolution of his emotions. Now the focus became his rela-
of bowel and bladder elimination. By helping Mr. ONeill gain tionships: an upcoming wedding anniversary, a sons gradua-
control of his body functions, nursing staff hoped to promote tion from law school. Rehabilitation nurses, home care
his condence, dignity, and feelings of self-worth. nurses, the psychologist, and the social worker supported the
patient and his family as they began to grieve the past that Modications to Environment
would never return and the future that was not to be. Pastoral
care was a signicant part of the process, as Mr. ONeill strug- Rehabilitation professionals are keenly aware of the effect of the
gled with spiritual questions and sought a peaceful under- environment of care on function, independence, and well-being.
standing of what was happening to him. The rehabilitation The physical arrangement of furnishings can be instrumental,
team endeavored to help the patient live all the days of his not only in promoting patient access to the environment, but
life, by helping body and soul continue to function. also in the ease with which others care for the patient. The
o] environment can be made into a powerful tool for orientation,
for spatial perception, and for preserving a territorial sense
of self.
o] Light has a strong effect, not only on visual perception, but
Facilitating Use of Adaptive Strategies also on mood and feelings of well-being. Light can be a helpful
tool in maintaining daynight rhythms and orienting patients
The ability of patients to continue to participate actively in liv- to time and place.8 Sound is also an important environmental
ing their lives has much to do with successful adaptation to variable. For example, music has been implicated as a thera-
changes in function. Even at the end of life, a patients capacity peutic intervention in both rehabilitation and palliative care.9
to adapt remains. Everyday activities may become very difcult
to perform with advancing disease. However, rehabilitation
nursing actions that promote communication, the use of appro- o]
priate tools and equipment, family participation, and modica- Promoting Quality at the End of Life
tions to the environment all enhance the process of adaptation.
The concept of quality of life is linked to function and indepen-
Communication dence. Patients often describe their satisfaction with life in terms
of what they are able to do. Important determinants of quality
Opening the doors to communication is the most important of life include (1) the patients own state, including physical and
rehabilitation nursing intervention. By removing functional bar- cognitive functioning, psychological state, and physical condi-
riers to speech, by teaching and supporting compensatory strate- tion; (2) quality of palliative care; (3) physical environment;
gies, and by allowing safe opportunities for patients and families (4) relationships; and (5) outlook.10 Rehabilitation zeroes in on
to discuss difcult issues around death and dying, rehabilitation the essential components of mobility, self-care, cognition, and
nurses perform a critical function in the adaptation process. social interaction, which dene what people can do.
Tools and Equipment 9=

case study
Many adaptive devices are available to patients and families
LN, a 42-Year-Old Woman with a Malignant Brain Tumor
that enhance functional ability and independence. Rehabilita-
tion offers the chance to analyze tasks with new eyes and solve LN, age 42, had just started her own consulting business
problems with creativity and individuality. Examples of useful when she began to experience headaches and visual distur-
tools to assist patients in being as independent as possible bances. At rst, she attributed her symptoms to the long
include reachers, dressing aids such as sock-starters, elastic hours and stress related to building her business. But when
shoelaces, and dressing sticks. For some patients, adapted eat- she experienced weakness of her left side, she knew that
ing utensils increase independence with the activity of eating something more serious was happening.
and thereby support nutritional intake. Modications to cloth- She had a glioblastoma multiforme growing deep in her
ing may permit more efcient toileting and hygiene, conserving brain. Surgery was performed to debulk the tumor, but in a
both energy and dignity. matter of weeks it was clear that the mass was growing rap-
idly. A course of radiation was completed to no avail. Her
Family Participation function continued to decline, and it seemed that every body
system was affected by the advancing malignancy. Now her
As illustrated in the previous case studies, the involvement of left side was densely paralyzed, she had difculty swallowing
family and friends has multifaceted benets. Because of the and speaking, and her thinking processes became muddled.
social nature of humankind, presence and involvement of fam- Her family was in turmoil. On one hand, they resented the
ily and friends has great importance at the end of life. Family disruption her sudden illness imposed on their previously
members may seek involvement in the caring activities as an ordered lives. On the other hand, they wanted to care for her
expression of feelings of closeness and love. They may try to nd and make sure that her remaining time was the best that it
understanding, resolution, or closure of past issues. For the per- could be. As they watched her decline day by day, ambiguities
son at the end of life, the presence of family, friends, and even in their relationships surfaced, and conicts about what
pets may be a powerful afrmation of the continuity of life. would dene quality of life emerged.
Rehabilitations part in promoting quality of life at the end in a different form, less connected to an event of cure and
of life is several-fold. Rehabilitation is a goal-directed process. more a part of her interactions with her daughter and sister.
Realistic, attainable goals based on the patients own deni-
tion of quality of life drive the actions of the team. In the area Family Support
of physical care, rehabilitation strategies support energy con- Another signicant area that related to quality of life for LN
servation, sequencing and pacing, maintaining normal rou- had to do with social well-being. She struggled with the idea
tines, and accessing the environment. Beyond that, of becoming a burden to her family and realized that she was
rehabilitation nurses facilitate effective communication and losing control over what was happening to her. Her relation-
problem-solving with patients and families. They offer accep- ships with others in her life were complex, and now they were
tance and support through difcult decision-making and challenged even further. At the same time, her family mem-
help mobilize concrete resources. bers wrestled with memories of the mothers death and feared
When rehabilitation nurses approach care, it is with the the responsibilities for care that might be thrust upon them.
goal of enhancing function and independence. In LNs case, The rehabilitation team tried to help the patient and her
the brain tumor created decits in mobility, cognition, and family work through their thoughts, feelings, and fears, and
perception. Also, more subtle issues greatly inuenced the helped them to nd ways to express them. The team arranged
quality of her remaining time. It was important to under- several family conferences to discuss not only the care issues
stand how the patient would dene the quality of her own life but also the changes in roles and family structure. Whenever
and to direct actions toward protecting those elements. possible, the team found answers to the familys questions
and made great effort to keep communications open. Creat-
Promoting Dignity, Self-Image, and Participation ing safe opportunities for the family to express their ambiva-
LNs concept of quality of life was evident in how she partici- lence and conict helped move them toward acceptance. The
pated in her care and the decisions that she made about her family was able to prepare in concrete ways for the outcome
course of treatment. The rehabilitation team learned that they both welcomed and dreaded.
LNs mother had died several years earlier of a similar brain o]
tumor. Caring for her mother had solidied her beliefs about
not wishing to burden others. Part of LNs denition of qual-
ity of life was that she would not be dependent on others. o]
LN prided herself on being industrious and self-sufcient. Understanding Outcomes
To her, the ability to take care of herself was a sign of success.
Rehabilitation nurses and therapists focused on helping to In rehabilitation, there is a strong emphasis on the measure-
manage symptoms of advancing disease so that she would be ment of patient outcomes. Since the 1950s, many functional
able to do as much for herself as possible. This included assessment instruments have been developed and used to help
adaptive techniques for daily living skills, pain management, quantify the changes that occur in patients as a result of care
eating, dressing, grooming, and bowel and bladder manage-
ment. Even with her physical and cognitive decline, retaining
her normal routines helped to allay some feelings of helpless-
Table 452
ness and to promote a positive self-image.
Measures of Functional Outcomes
Control, Hope, and Reality Barthel Index15 (Mahoney 1958)
As her illness progressed, LN felt she was losing control. It Dartmouth COOP Functional Health Assessment Charts16
became difcult for her to remember things, and expressing Edmonton Functional Assessment Tool17
herself became more laborious and frustrating. She slept fre-
Functional Activities Questionnaire18,19
quently and seemed disconnected from external events. Her
Functional Independence Measure13,14
family understood her usual desire for control and made
many attempts to include her in conversations and to support Functional Status Index20,21
her in making choices. Index of Independence in Activities of Daily Living (ADL)22
At rst, her concept of hope was tied to the idea of cure. Kenny Self-Care Evaluation23
Radiation therapy represented the chance of cure. When that Lambeth Disability Screening Questionnaire24
was completed without appreciable change in her tumor,
Medical Outcomes Study Physical Functioning Measure25
some of her feelings of hopefulness slipped away. She sank
Physical Self-Maintenance Scale26
into a depression. Her family was alarmed: LNs psychological
well-being was a critical component in her own denition of PULSES Prole27
quality of life. Treating her depression became a priority issue Rapid Disability Rating Scale11
for the rehabilitation team. Through a combination of reha- Self-Evaluation of Life Function Scale28
bilitation psychological counseling and antidepressant med- Stanford Health Assessment Questionnaire29
ications, her dark mood slowly lifted. Hope seemed to return
and recovery. Some instruments to measure functional and Assessment Questionnaire (HAQ)12 is a widely used instru-
physical outcomes are applicable to the assessment of patients ment that summarizes the patients areas of major difculty.
within the last month of life. The Functional Independence Measure (FIM) is an ordinal
There are more than a dozen functional outcome mea- scale that quanties 18 areas of physical and cognitive function
surement tools in common use in rehabilitation settings in in terms of burden of care.13,14 These scales are appropriate to
the United States and Canada (Table 452). Measurement of palliative care because they focus on specic aspects of func-
self-care and mobility are central to rehabilitation, but the tion that relate to patients independence. The scales may be
functions and behaviors required to lead a meaningful life used to determine whether interventions at the end of life serve
are much broader. They may include cognitive, emotional, to foster independence and function for as long as possible.
perceptual, social, and vocational function measurements There is also strong interest in the eld of rehabilitation in
as well. measuring patients perceptions of quality of life. When the
For measuring function in the last 30 days of life, three scales measured domains are considered, the connection between
may be particularly useful. The Rapid Disability Rating Scale rehabilitation and end-of life care becomes evident. Most of
(RDRS-2)11 has a broad scope to include items related to the measurements of quality of life have to do with physical,
activities of daily living, mental capacity, dietary changes, con- cognitive, social, and spiritual function, the chief concerns of
tinence, medications, and connement to bed. The Health the rehabilitation practitioner (Table 453).
Table 453
Examples of Quality-of-Life Measure
Name of Instrument Domains Measured
CARES-SF30 Rehabilitation and quality of life for patients with cancer

Chronic Respiratory Disease Questionnaire31 Measuring outcomes of clinical trials for patients with chronic obstructive
pulmonary disease
City of Hope Quality of Life, Cancer Physical well-being, psychological well being, and spiritual well-being
Patient Version32
COOP Charts16 Screen patients in an outpatient setting
Daily Diary Card-QOL33 Changes in quality of life related to symptoms induced by chemotherapy
EORTC QOL-30 34 Physical function, role function, cognitive function, emotional function, social
function, symptoms, and nancial impact
FACT-G35 Patients undergoing cancer treatment
Ferrans and Powers Quality of Life Index36 Satisfaction with and importance of multiple domains
FLIC 37 Physical/occupational function, psychological state, sociability, and
somatic discomfort
HIV Overview of Problems Evaluation Rehabilitation and quality of life for patients with HIV
Systems (HOPES)38
Hospice Quality of Life IndexRevised39 Physical, psychological, spiritual, social, and nancial well-being
McGill Quality of Life Questionnaire 40 Quality of life at the end of life
Medical Outcomes Study, Short Form Physical functioning, role limitations, bodily pain, social functioning, mental health,
Health Survey25 vitality, and general health perceptions
National Hospice Study Quality of Life Scale41 Quality of life at end of life
Nottingham Health Prole42 Physical, social, and emotional health problems and their impact on functioning
Quality of Life Index 43 General physical condition, important human activities, and general quality of life
Quality of Life for Respiratory Chronic nonspecic lung disease
Illness Questionnaire44
Quality of Well-Being Scale45 Mobility, physical activity, social activity, and 27 symptoms
Sickness Impact Prole 46 How an illness affects a persons behavior
Southwest Oncology Group Quality of Function, symptoms, and global quality of life measures
Life Questionnaire47
Spitzer QL-Index48 Activity level, social support, and mental well-being
VITAS Quality of Life Index49 Symptoms, function, interpersonal domains, well-being, and transcendence
Outcome measurements matter because they can reveal a 8. Stewart K, Hayes BC, Eastman CI. Light treatment for NASA
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46. Bergner M, Bobbitt RA, Pollard WE, Martin DP, Gilson BS. The
Sickness Impact Prole: Validation of a health status measure. American Academy of Physical Medicine and Rehabilitation
Med Care 1976:14:5767. (AAPM&R)
One IBM Plaza, Suite 2500, Chicago, IL 60611 http://www.rehabnurse.org

http://www.aapmr.org Commission for the Accreditation of Rehabilitation Facilities (CARF)
American Congress of Rehabilitation Medicine (ACRM) 4891 E. Grant Road, Tucson, AZ 85712
4700 W. Lake Avenue, Glenview, IL 60025 http://www.carf.org
http://www.acrm.org Rehabilitation Foundation, Inc.
Association of Rehabilitation Nurses (ARN) 600 S. Washington St. Suite 301A, Naperville, IL 60540
4700 W. Lake Avenue, Glenview, IL 600251485 http://www.r.org
46o] Margaret Campbell and Robert Zalenski
The Emergency Department

We were trained to rescue patients in the EDI cant just stand by and let someone die.
Emergency physician and former residency director
Key Points Each year, there are 110 million visits to emergency depart-
Each seriously ill person triaged in an emergency department (ED) ments (EDs) in the United States, and almost 1% or approxi-
presents in a crisis that has physical, emotional, social, and spiritual mately 1 million of these visits result in death in the ED or
components. hospital.1 The emergency team in a busy ED typically perform
The growing number of patients presenting to the ED at the end of or withholds attempts at resuscitation several times during an
life means an increase in the proportion of patients for whom the 8- to 12-hour shift.
default resuscitation approach is less applicable. Emergency physicians and nurses traditionally view them-
Rapid identication of treatment goals with the terminally ill selves as foot soldiers in the trenches ghting against the
patient or surrogate prevents unwanted resuscitation and enemy, dying and death. The criterion of success is whether
application of burdensome life-prolonging therapies. the patient was admitted to the hospital or discharged to the
The most prevalent distressing symptoms that require immediate community alive. Death is regarded as failure; it may be blamed
attention for the patient who is dying in the ED are pain on the disease or the patients response, but must not be
and dyspnea. blamed on a clinicians lack of willingness to do everything
Unrestricted access of the family to the dying patient can be to keep the ED patient alive. In this view, every ED case can be
successfully implemented in the ED. dichotomized into success or failure based on whether the
An unexpected death in the ED requires a different approach to patient left the ED with a pulse.
preparing the body for viewing that consists of minimizing delays This traditional view of the ED misses the complexity and
and judicious draping. the reality of life and death. The reality is that each seriously ill
person triaged in an ED presents in a crisis that has physical,
emotional, social, and spiritual components. Each person who
might die soon is at a particular point in his or her life cycle,
and for the person and the family, death may be either unex-
pected or expected. For some of these patients, it would be
unthinkable not to have all aggressive efforts to prolong life no
matter its quality; for others, the ritualized set of resuscitative
procedures before death is considered worse than death itself. In
most EDs, there are clinicians who want to know the more com-
plex and vulnerable person beneath the presenting disease label,
who are willing to tailor treatment and disposition to the more
important needs discovered.
This chapter on palliative care in the ED is designed to
assist in recognizing and addressing the needs of irreversibly ill
patients and their families. From this perspective, the key
questions to be added to the basic ED assessment include the
following: Is the patient/family aware of the presence of an
incurable illness? What are their preferences for care, and how
rapidly can we establish treatment goals? What can be done to
861
relieve distressing symptoms? What can be done to ease the as they should if the ED clinicians recognize that the reex
familys distress and meet their needs? curative/restorative ED procedure is in fact the wrong thing
The workload in the ED is such that, for most patients, the for the patient and family. More commonly, such decisions are
greet, treat, and street approach must necessarily prevail to turfed to the admitting team by default, although prudence
prevent gridlock.2 But for the smaller number of patients who would dictate that ED providers not hand off such discussions
present with severe uncontrolled symptoms and organ failure on nights or weekends, when the patient might die before oth-
that is not curable, recommendations made to lessen suffer- ers have had a chance to establish or review goals of care.
ing and respect preferences for care can provide a rewarding Patients with terminal illness who present with advanced
sense of satisfaction for provider, patient, and family alike. disease and distressing symptoms should be assessed for their
There are a growing number of elderly persons in this coun- awareness of their prognosis. One approach is to ask the patient,
try, and care teams are likely to face an increased incidence of Tell me what you understand about your cancer. Patients (or
terminally ill patients presenting to the ED who can be guided surrogates) with open awareness are good candidates to begin
into the positive outcomes that palliative care can provide. a palliative care approach in the ED, rather than resuscitation
and admission to the intensive care unit (ICU). Palliative-
directed intervention in the ED can help avoid the worst-case
o] scenario: uncomfortable interventions in unrecognized termi-
Recognizing Poor Prognoses nal illness that result in a moribund patient who is unprepared
for death and unable to make choices to forgo further non-
Experienced emergency nurses and physicians are able to rec- benecial interventions.
ognize the gravely and terminally ill, who arrive with severe dis- Patients who die suddenly present a number of challenges to
tressing symptoms, altered mental status, or imminent death. ED clinicians. In general terms, they often leave behind loving
Examples are an 80-year-old with advanced dementia, decu- family members who are not yet aware of their death. Patients
biti, severe cachexia, and aspiration pneumonia; a 60-year- who die unexpectedly of acute renal, respiratory, or heart fail-
old with marked cachexia, dyspnea, metastatic non-small-cell ure are ideal candidates for the default ED approach and are
lung cancer who has received surgery, radiation, and two amenable to all aggressive resuscitative effortsunless there is
courses of chemotherapy; a 50-year-old man with cardiac an advance directive (AD) to withhold them. When death
arrest, in pulseless electromechanical dissociation despite 20 occurs in the ED after an attempt at resuscitation, the surviv-
minutes of three rounds of resuscitative therapy; the 60-year- ing families are ill-equipped to cope with the news and require
old with severe diabetes and poorly controlled hypertension intensive interventions directed at bereavement care. Studies
who has declined dialysis and is now in pulmonary edema have revealed that families want to be informed of the death in
with distressing dyspnea. a compassionate and unhurried manner; to be reassured that
To help clarify thinking about patients who die, researchers the patients belongings will be properly handled; to be told
have conceptualized them by placing them on one of ve what to do next (e.g., how to contact a funeral home); and to
dying trajectories: (1) terminal illness, such as cancer; have the opportunity for follow-up with the hospital to answer
(2) sudden death, if younger than 80 years of age and previ- unresolved questions.57 Development and implementation of
ously healthy; (3) organ failure, such as congestive heart failure ED-focused bereavement guidelines enhance the quality of
(CHF) and chronic obstructive pulmonary disease (COPD); care provided to the family after an unexpected loss.810
(4) frailty, such as with dementia, bed bound, or with multiple Patients with organ failure, notably those with CHF or
recurrent hospitalizations; and (5) other. Data from Medicare COPD, are usually resuscitated or pronounced dead in the ED.
decedents shows that 47% were considered to have died of Because the chance of pulling a patient through one more
frailty, 22% were on a cancer-like trajectory, 16% had organ episode is relatively high, this course of action, conforming to
failure, 7% had sudden death, and 8% were in the other the default ED approach, is often the road of least resistance
category.3 and the most appropriate course. Inquiring about treatment
Within each trajectory, death can be considered expected preferences for resuscitative therapy is important if the
or unexpected by the provider or patient/family. If death is patient is still alert or the family is available. Patients who arrive
expected or known by the provider only, this is termed closed in extremis with clear expressions of their wishes, such as docu-
awareness; if known by provider and patient, it is called open mented and conrmed forgoing of resuscitation, and hospice
awareness. Other possibilities are that neither the provider patients seeking comfort care that outstrips the homes resources
nor the patient is aware that the patient is dying (no aware- should continue to have their preferences honored by the
ness), or that the patient is aware but the provider is not, which ED team.
can be termed hidden awareness.4 Assessment here has great Patients dying on the frailty trajectory should have had ample
implications, because the type of awareness of death (open time for their or their surrogates preferences to be established
versus closed versus no) often determines the ability of the before the ED visit. As with patients with organ failure, they
provider to render optimal care. should have these preferences assessed and their awareness of
Each trajectory has implications for a palliative approach to dying probed. Admission for a palliative care approach rather
the patient. Sometimes such discussions take place in the ED, than ICU admission could be considered.
The Emergency Department 863
The fact that growing numbers of patients are presenting to might ask, I see you already have wishes about CPR; will you
the ED at the end of life means an increase in the proportion tell me more about your preferences for treatment?
of patients for whom the default ED approach is less appli- In the absence of an AD, or if the AD is ambiguous, the ED
cable. This calls for a growing sensitivity of ED clinicians for staff are obliged to engage in a decision-making process at the
greater skills in palliative care. ED staff must become comfort- earliest opportunity after identifying or inferring the patients
able with the decisions that patients or their surrogates make terminal prognosis. This conversation may occur before or
regarding forgoing resuscitative interventions and accepting after an attempt at resuscitation. A discussion with the patient
natural death.11 ED staff are highly trained to rescue and, as who has retained decision-making capacity about diagnosis,
with other specialty areas in the hospital, can provide the req- prognosis, and relevant treatment options is a challenging pro-
uisite palliative care interventions to patients and their fami- cess in the ED, because the patient may have no prior relation-
lies who may be dying in the ED. ship with the ED staff and may be lacking bonds of trust and
rapport. Furthermore, this type of clinicianpatient conversa-
tion is ideally held in privacy and quiet, and the ED environ-
o] ment is not always a conducive setting. A creative approach to
Establishing Treatment Goals nding a quiet room or screening an area around the patient is
needed.
When the terminally ill patient presents to the ED, rapid iden- Cognitive impairment is highly prevalent in terminally ill
tication of treatment goals with the patient or the surrogate patients, particularly those whose death is imminent, and it
of an incapable patient is indicated and may prevent unwanted may preclude them from having the capacity to make decisions
resuscitation and the application of other potentially burden- about treatment.1820 Reliance on a valid surrogate decision-
some life-sustaining therapies. Likewise, if palliative care maker, usually a family member or close friend, becomes nec-
treatment goals are established rapidly after an attempt at essary. Surrogates appointed by the patient through an AD
resuscitation, the patient and family can be afforded a quick have pre-eminence in decision-making. In the absence of a
transition from resuscitation to comfort by a skilled, compas- patient-appointed proxy, many states have enacted surrogacy
sionate ED intervention to withdraw unwanted life supports. statutes, often relying on a next-of-kin hierarchy, to direct cli-
Establishment of palliative care treatment goals in the ED can nicians. Clinicians need to know the provisions of their own
be inhibited by lack of prognostic information, the lack of any state when seeking a surrogate decision about treatment. Table
prior relationship with the patient or surrogate, a need for rapid 461 details the core components of a discussion about end-
action, and the fear of liability if life is not extended.12,13 Hope- of-life treatment options.
fully, clinicians in EDs will begin to see themselves as ideally
positioned to identify and treat palliative care emergencies
9=
such as pain crisesand adopt the goals of prevention of suf-
case study
fering and enabling of a good death. This development will
HR, an 88-Year-Old Woman with Dementia
expand the ED concept of success.
Most physicians (78%) responding to a survey study about HR is an 88-year-old woman brought to the ED from her
cardiopulmonary resuscitation (CPR) indicated that they nursing home. She is in the terminal stage of dementia by
would honor legal ADs about resuscitation.12 However, despite physical examination and report from the nursing home, yet
more than a decade of experience with the Patient Self- treatment goals have never been established with her only
Determination Act,14 there continues to be a paucity of persons surviving family member, a niece. HR is curled into a fetal
who have completed an AD. In the general U.S. population position and has stage III and IV sacral, trochanter, and heel
only 15% of Americans have an AD,15 but among frail, elderly decubiti. She is febrile, she has leukocytosis, and her chest
nursing home residents the prevalence of AD completion radiograph is consistent with aspiration pneumonia. Her res-
increases to 45% to 60%.1517 piratory pattern and blood gas analysis predict imminent respi-
Even if the AD accompanies the patient to the ED, it may ratory failure. The ED staff are in consensus that this patient
have limited usefulness in guiding emergency management. would benet from a palliative care approach rather than
One study found that, although 44% of nursing home resi- intubation and admission to the ICU.
dents seen in the ED had ADs, the ADs frequently addressed The ED social worker calls the patients niece and asks her
only CPR and did not address other life-supporting strategies to come to the hospital as soon as possible. On her arrival, an
(e.g., intubation) with the same frequency.16 Yet, even a limited ED physician, nurse, and the social worker sit with the niece,
AD provides the ED clinician with a starting point for a con- discuss the patients diagnoses and prognosis, and make a
versation about treatment preferences. The ED clinician can recommendation about comfort care. The niece agrees,
open the discussion with a request for clarication of the pref- thanks the team, and reports that no one has ever raised this
erences expressed in the directive, and the conversation about option with her in the past. She believes that her aunt has
contemporaneous diagnosis and treatment recommendations suffered enough and should pass naturally and peacefully.
and preferences will ow. After ascertaining the patients The hospitals palliative care service is consulted by the ED
or surrogates understanding about the illness, the clinician for admission, instead of the ICU.
assessment and reevaluation over time and across caregivers.

Table 461 Pain occurs as result of trauma, somatic disorders, and com-
Core Components of a Discussion about
mon ED procedures.25,26
End-of-Life Treatment Goals
Critically ill patients and those with cognitive impairments
Prepare in advance. may not be able to provide a self-report in such cases, a com-
Identify the diagnosis/prognosis. bination of measures is used to validate the assessment. Behav-
Determine what the patient or surrogate already knows. iors such as facial grimacing, restlessness, moaning, muscle
Seek assistance from support personnel (e.g., chaplain, tension, tachycardia, tachypnea, and diaphoresis may be cues to
social worker, patient advocate). unrelieved pain.2730
Establish a therapeutic milieu. Analgesics are the standard agents for managing pain in the
Identify a private and quiet place in the emergency terminally ill patient. Nonsteroidal antiinammatory drugs
department where everyone can sit and be seen and have a limited role for treatment of mild to moderate pain and
heard. bone pain, and conservative use is recommended in the geri-
Minimize interruptions. atric patient. Opioids, with the exception of meperidine, are
Seek patient and surrogate knowledge about diagnosis and the drugs of choice for moderate to severe pain, and antide-
prognosis. pressants or anticonvulsants are used for neuropathic pain.31,32
Correct inaccuracies and misconceptions. The route is chosen according to patient characteristics and
Provide additional information. goals of analgesia, including the desired rapidity of response.
Communicate effectively. Intravenous or subcutaneous administration affords the most
rapid onset of action. Oral, sublingual, or buccal administra-
Avoid jargon, slang, and acronyms.
tion causes the least patient burden when there is an intact
Demonstrate empathy.
Be honest and direct. oral cavity. Transdermal medication is useful for long-acting,
chronic analgesia; it should not be used as the rst-line strat-
Make a palliative care treatment recommendation.
egy, because of the long delay in onset of action, and or if the
Provide rationale for recommendations. therapeutic dose has not been determined, as may be the case
Answer questions. with an ED patient. The intramuscular route is discouraged
Seek patient or surrogate agreement with recommendation. because of poor absorption and patient discomfort.31,32
Analgesics are titrated according to the patients responses;
Source: Campbell ML. Communicating a poor prognosis and making
decisions. In: Foregoing Life-Sustaining Therapy: How to Care for the Patient therefore, frequent reassessment to evaluate effectiveness is
Who Is Near Death. Aliso Veijo, CA: American Association of Critical-Care indicated. Although an individual patient may experience tox-
Nurses, 1998, pp 1941. icity, there are no dose ceilings when using opioids, and titra-
tion to therapeutic effect may require high doses in patients
with opioid tolerance or severe pain. Equianalgesia tables and
consultation with pain specialists may be used to guide appro-
After the goals of treatment have been determined with priate dosing.31,32
the patient or surrogate, the relevant interventions can be Like pain, dyspnea and any associated respiratory distress
identied. A focus on palliation rather than resuscitation must be assessed frequently in high-risk patients, because many
indicates that reduction of symptom distress and attention to pulmonary, cardiac, and neuromuscular terminal illnesses pro-
patient and family grief are the priorities of patient and fam- duce breathing distress. The gold standard for this subjective
ily care. experience is the patients self-report, using either a numeric or
o] a visual analog scale. Behavioral cues are useful if the patient is
unable to self-report and include tachypnea, tachycardia, acces-
sory muscle use, a paradoxical breathing pattern, restlessness,
o] nasal aring, and a fearful facial expression.33
Symptom Management: Pain and Dyspnea Treatment of dyspnea or respiratory distress can be organ-
ized into three categories: prevention, treatment of the under-
The most prevalent symptoms that produce distress in the lying cause, and palliation of symptom distress. Prevention of
dying patient and require immediate attention are pain and dyspnea in the dying ED patient warrants maximizing treat-
dyspnea.2124 The nursing process (i.e., assessment, planning, ments that have proved benecial to the patient, including
intervention, and evaluation) guides effective symptom man- enhancing ventilator synchrony if the patient is going to remain
agement in the ED. ventilated, avoiding volume overload, and continuing oxygen
The gold standard for pain assessment is the patients self- and nebulized bronchodilators. Measures to correct metabolic
report. When the patient is able to self-report, his or her acidosis may also be useful to decrease the work of breathing
appraisal of pain intensity, location, quality, and possible causes and thereby decrease respiratory distress.
should be sought. A documented trend using a numeric rating Treating underlying causes of dyspnea may be useful, par-
or visual analog scale is standard and permits continuous ticularly if the benet of the treatment is not in disproportion
to the burden. If death is not imminent, the patient may bene- evidence and support for the successful implementation of
t from antibiotics, corticosteroids, paracentesis, pleurodesis, families at the side of loved ones during resuscitation and inva-
or bronchoscopy. sive procedures in the ED.5053 It follows that if families and
A number of strategies have demonstrated effectiveness for patients can be accommodated with open access to one
palliation of terminal dyspnea, including optimal positioning, another in the ED during procedures, then unrestricted visit-
oxygen, and sitting in front of a fan. Upright positioning that ing for the dying patient and grieving family is possible.
affords the patient an optimal lung capacity is useful, espe- Ideally, the patient and family should be separated from the
cially for patients with COPD.34,35 Oxygen has been shown to harried milieu of the ED while dying or waiting for a hospital
be more effective than air in hypoxemic cancer patients36,37 and bed, yet still visible and accessible for close monitoring and
in patients with advanced COPD.38 However, other investiga- care. Movement to a quieter area in the ED, such as the obser-
tors reported no difference in cancer patients respiratory vation care unit or an isolation room, may serve this purpose,
comfort in response to oxygen compared with air,39 and particularly if there is space for a few chairs and the attendant
increased ambient air ow, fans, and cold air have also been family. Limiting visitors to only two at a time has no rationale
found to be therapeutic.4043 Oxygen can be more burdensome if the patient is dying and there is a large, loving family.
than benecial in the patient who is near death, particularly if
a face masks is employed, because the mask produces a feeling
of suffocation. The individual patients report or behavior in o]
response to oxygen determines its usefulness. The comatose Death Notication and Requests for
patient does not require oxygen while dying. Organ/Tissue Donation
Opioids are the mainstay of pharmacological management
of terminal dyspnea, and their effectiveness has been demon- Delivery of adverse diagnoses and death notication entails all
strated in clinical trials. A metaanalysis of 18 double-blind, of the communicative skills of the ED staff. A framework for
randomized, placebo-controlled trials of opioids in the treat- communicating bad news is helpful. There are four temporally
ment of dyspnea from any cause revealed a statistically posi- ordered segments in the approach to breaking bad news:
tive effect on the sensation of breathlessness (P = 0.0008). the preparation, the content, the survivors response, and the
Metaregression indicated a greater effect in studies using oral close.54
or parenteral opioids than in studies using nebulized opioids. Key elements of the preparation phase include a private set-
In subgroup analysis, the COPD studies had essentially the ting, with determination of what the family already knows
same results as the cancer studies.44 In the ED, parenteral about the illness or accident. Important elements of the con-
access is almost universal, obviating the need for other routes tent phase include including a warning shot. For example,
of administration except in special or unusual circumstances. the physician might say, There has been a factory accident,
Doses for treating dyspnea are patient specic, and, as with and I am sorry to say that I have bad news. The news should
opioid use in the management of pain, no ceiling should be then be stated clearly: Your husband died in the accident.
placed on dosage. The dose should be rapidly titrated until the Drawn-out deliveries may be more comfortable for the staff,
patient reports or displays respiratory comfort. Frequent bed- but they are not helpful to the anxious family member.55
side evaluation to assess the efcacy of the medication is In order to cast death notication in an easily learned for-
essential. mat, similar to the way other procedures are taught, a proce-
Fear and anxiety may be components of the respiratory dis- dural competency model has been developed.56 The steps are
tress experienced by the dying ED patient. The addition of a summarized in Table 462.
benzodiazepine to the opioid regimen has demonstrated suc- Deaths that are out of cycle (e.g., death at a young age), out
cess in patients with cancer45 and with advanced COPD.46 As of context (e.g., death was not expected because oncologist
with opioids, these agents should be titrated to effect. Care of overestimated length of life remaining), or sudden are the
the attendant family to reduce their fear, anxiety, and grief hardest for families to bear. Ideally, contact information for
warrants as much effort as that directed to the patients needs. bereavement counselors or for support groups in the commu-
nity should be given to the family.
Federal law (Public Law 99-5-9; Section 9318) and Medicare
o] regulations mandate that hospitals give surviving family
Family Presence members the chance to authorize donation of their family
members organs and tissues. Most families are receptive to
Studies have consistently demonstrated that families want to requests for donation, and many take consolation in helping
be close to their terminally ill loved ones.47,48 Family access others despite their own tragic loss. Studies show that it is essen-
promotes cohesion, affords the opportunity for closure, and tial to approach relatives for this purpose only after death noti-
may soothe the patient. Unrestricted access of the family to the cation is completed, allowing a temporal separation between
dying patient is a standard of care in hospitals and nursing death notication and the request for organs. Also, a higher
homes.49 The family of the patient who is dying in the ED response rate is obtained if the requesting personnel have
should be afforded this same benet. There is growing received specic training for this purpose.57,58
o]
Table 462 Care of the Body
Elements of an Empathic Death Disclosure
Introduce self/role. It is commonly accepted that long-term outcomes are better

Sit down. for those who are able to see the deceased body of a loved one.
Assume comfortable communication distance. Viewing the body helps those who are grieving acknowledge
Tone/rate of speech acceptable. and begin to come to terms with the death.60 If the death is
Make eye contact. expected, the body should be bathed and laid out neatly on the
Maintain open posture. stretcher with the eyes closed, and the preparation should be
Give advance warning of bad news. completed before the family arrives. Families who are present
Im afraid I have bad news. at the time of death may want to participate in body prepara-
tion. In some cultures, rituals at the time of death require fam-
Deliver news of death clearly.
ily involvement and should be accommodated within reason
Use direct terms such as dead or died. in the ED. For example, in some Moslem traditions the body is
Use no medical jargon.
turned to face east, and persons of the same gender and reli-
Use language that is clear and easily understood.
gion as the deceased perform the postmortem care. Some fam-
Tolerate survivors reaction.
ilies may want private time with the body of the deceased, but
Explain medical attempts to save patient. others may want a supportive person from the hospital staff,
Offer viewing of deceased. such as a nurse, aide, or chaplain, to remain in attendance.61
Offer to be available to survivor. If the death is unexpected, such as from an accident or sud-
Conclude appropriately. den illness, the family who are arriving at the ED need a dif-
ferent approach to viewing the body. After learning of the
Offer condolences and leave.
death, the family may demonstrate an urgency to see the body,
Source: Quest et al. (2002), reference 56. Copyright 2002, with permission and delays for cleaning and laying out may produce more dis-
from The Society for Academic Emergency Medicine. tress; likewise, not seeing the body because of disgurement
or mutilation causes distress to the bereaved.60 Seeing the
deceased and the evidence of the injury or accident, along with
the accoutrements of the attempts at resuscitation, gives a sub-
One of the most difcult tasks caregivers must complete is liminal message to the family that the ED staff did all they could.
to witness the acute grief reaction of the family after they have The ED nurse should allow the family access to the deceased at
received the news of unexpected death. The newly bereaved is the earliest possible opportunity and should use judicious
literally broken from the world in which he or she formerly draping to cover the most severe disgurements.
lived. There is often an unreal feeling of disbelief or suspen-
sion in time and insulation from place. The bereaved can feel
9=
hopeless, frustrated, and oftentimes very angry. It is important
case study
for the caregiver to stay with the bereaved during this initial
HP, a Victim of a Motorcycle Accident
grief reaction, which can be brief or last for several minutes. If
duties prevent staying put, then the caregiver should most def- While riding his motorcycle, HP was hit by a truck and
initely return after the bereaveds initial emotions have sub- dragged. He sustained a closed head injury, a severe scalp lac-
sided. It is only then that the bereaved family member is able eration, comminuted fractures of both femurs and of the left
to reengage in rational thought, and at that point he or she humerus, rib fractures bilaterally, and a ruptured spleen. He
needs answers to when, where, what, and how questions about died in the ED during trauma resuscitation.
the death. Reassurances about the patients not having suf- The frantic family arrived at the hospital shortly after
fered, if based in reality, may prove helpful to the bereaved.59 death was pronounced and screamed to see the patient. The
A ne tradition from the U.S. military mandates that an resuscitation room looked like a tornado had touched down,
ofcer and aid (a team) stay with the bereaved family until they with empty supply wrappers, intravenous uid bags, and
are released. Although this may be harder to achieve in the ED, soiled dressings on the counters and oor. The deceased was
the same sense of solemn duty could be embraced by staff bloody, with his torn clothing partially removed or cut off,
members performing death notication. The tone of voice, and bone was protruding from his left arm and both legs. He
words, bearing, and demeanor of the individual performing had bilateral chest tubes, a Foley catheter, three large-bore
death notication will be seared into the mind and hearts of Angiocaths, and an endotracheal tube that had to remain in
the bereaved forever. Death notication is an immense respon- place for the medical examiner.
sibility and must be done well. Family witness to resuscitation The nurse recognized the familys need to see the body as
efforts is an alternative method of death disclosure. The bad quickly as possible. She enlisted a nurses aide to rapidly
outcome and the intensity of life-saving efforts are communi- reduce the amount of debris on and around the stretcher. She
cated over a period of 20 minutes rather than 2 minutes. draped the body to cover the worst injuries, including the
exposed bones, and washed the deceaseds face and hands. A informed by research and includes effective communication
hand towel covered the scalp wound without covering the about prognosis or death notication and timely access to the
face. Within ve minutes the nurse had prepared the body patient before or after death.
and room for the family. Personal and professional satisfaction with comprehensive
The nurse escorted the weeping family to see the body and dying care in the ED can be achieved by ED staff. Compassion-
remained unobtrusively nearby in case anyone fainted. She ate recommendations made to decrease suffering and ensure
also answered questions about the injuries and the magni- respect for the dying patient afford the survivors a positive expe-
tude of the efforts to resuscitate. Later, after the family was rience, even in the face of loss.
more composed, the nurse explained the procedures for
referral to the county medical examiner and the need to iden-
tify a funeral home. She also gave the family the business card
of a trauma counselor who specialized in bereavement coun- references
seling. The nurse found a quiet, private place for the family to
wait until they reached an emotional calm that would allow 1. Centers for Disease Control and Prevention, National Center for
them to drive home safely. Health Statistics. Health, United States, 2004, With Chartbook
on Trends in the Health of Americans. Hyattsville, MD: Author,
o]
2000:293, http://www.cdc.gov/nchs/data/hus/hus04.pdf (accessed
The use of cadavers to practice procedures such as endotra- March 16, 2005).
cheal intubation in the ED has been commonplace as an inte- 2. Karpiel M. Improving emergency department ow: Eliminating
gral part of resident training.62 Current ethical norms do not ED inefciencies reduces patient wait times. Healthcare Execu-
permit this practice without contemporaneous consent from tive 2004;19(1):4041.
3. Lunney JR, Lynn J, Hogan C. Proles of older Medicare dece-
the surviving family or evidence from a patients AD that this
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47o] Betty R. Ferrell, Gloria Juarez, and Tami Borneman
The Role of Nursing in Caring for Patients

Undergoing Surgery for Advanced Disease
At least Ill have a chance of being cancer free. Well, at least somewhat cancer free before the next
bombardment, since its obviously, its obviously a virus that I just cant ght off. My immune system
has been so compromised that I just cant ght the cancer off. . . . With the surgery, they told me I
wont be in remission again. Ill be in transition.A patient
Key Points 9=
Patients and their family caregivers facing surgery for advanced case study
disease have complex physical and psychosocial problems. Rosa Hernandez, a 38-Year-Old Woman
Patients and family members require support as they make with Cancer of the Gallbladder
decisions regarding the benets and burdens of treatments for
Rosa Hernandez is a 38-year-old Hispanic woman who
advanced disease.
resided in Southern California for the past 8 years, having
Palliative surgeries affect physical, psychological, social, and
previously lived her entire life in Mexico. She is married to
spiritual well-being as well as additional health system outcomes.
Juan, and they have four children ranging in age from 6 to
17 years. Three months ago, she began to experience numer-
ous gastrointestinal symptoms including bloating, mild nau-
sea, abdominal pains, and severe indigestion. After trying
numerous over-the-counter medications and herbal treat-
ments, she sought medical evaluation and was diagnosed
with cholangiocarcinoma. She and her family were drawn to
the University Cancer Center, in part because a cousin who
had been diagnosed with acute leukemia several years
previously had been very successfully treated at this center
and cured of his leukemia. They came to the Cancer Center
with great condence that Rosa would also be cured of her
disease. The surgeon explained the seriousness of her
cancer in the gallbladder and the widespread metastases to
the liver. When offered treatment choices, Rosa and Juan as
well as their large extended family aggressively voiced their
desire for all treatments possible and repeatedly expressed
their condence in the surgical team and staff to save
her life.
The surgeon explained that the procedure planned, resec-
tion of the tumor and partial liver resection, was not curative
but might offer some relief for her symptoms. Juan expressed
that they had faith in God and the surgeon. The evening
nurse caring for Rosa, Emily James, approached the patient
late one evening to discuss the surgical consents for the pro-
cedure planned the following day. Rosa told Emily that she
had no questions and would sign the consents because she
was eager to get rid of the cancer in her body.
o]
871
This case illustrates the numerous complexities of caring for apy, radiation, or surgery and when it is time to stop such
patients with advanced disease for whom surgical treatment treatments. Even amid the recognition of advanced disease,
may be an option. The nurse is faced with caring for a patient patients often seek aggressive treatment with the hope of pro-
with advanced cancer and a poor prognosis yet both the longing their survival, even if only for a matter of months, or
patient and family are expecting a miracle. There are many of possibly enhancing their quality of life (QOL) through the
complex cultural and social factors affecting her decisions for relief of symptoms.13
care as well. The nurse is challenged to work with the patient, Figure 471 is derived from research in the area of palliative
her family, the physician, and other interdisciplinary col- surgery conducted at the City of Hope National Medical Cen-
leagues to provide the best information and support for this ter (COH).4 The model demonstrates that the process of mak-
family, while also anticipating the many immediate postoper- ing decisions about palliative surgery often involves inuences
ative needs as well as the longer-term symptom management from the patient, the family, and the health care team. Patients
and disease issues. This case is but one example of the incred- and families must weigh the potential benet versus the harm
ibly complex and challenging needs of patients undergoing of the surgery proposed, while the health care team considers
surgery for advanced disease. factors such as the difculty of the procedure, the duration of
hospitalization, recovery time, chance of achieving the goal,
anticipated durability of the intervention, and anticipated dis-
o] ease prog

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Textbook of

Betty R. Ferrell, RN, PhD, FAAN

OXFORD UNIVERSITY PRESS

Betty R. Ferrell, RN, PhD, FAAN

Nessa Coyle, RN, PhD, FAAN

Oxford New York

Copyright 2006 by Oxford University Press, Inc.

Published by Oxford University Press, Inc.

Library of Congress Cataloging-in-Publication Data

to peace and opportunity. The nurse, in her or his skilled com-

1. Saunders CM. Care of the dying. Nursing Times reprint. London:

1. Henderson V. Basic Principles of Nursing Care. London: Inter-

The rst edition of Textbook of Palliative Nursing was pub-

1 Introduction to Palliative Care Nursing Care 5

2 Hospice Palliative Care: A Model

3 Principles of Patient and Family Assessment 47

4 Communication in Palliative Care 67

6 Pain at the End of Life 131

8 Anorexia and Cachexia 169

9 Nausea and Vomiting 177

10 Dysphagia, Xerostomia, and Hiccups 195

11 Bowel Management: Constipation, 27 Bereavement 531

14 Urinary Tract Disorders 265 Part IV o]

16B Skin Disorders: Tumor Necrosis, 32 Meaning in Illness 605

18 Neurological Disturbances 365 Part V o]

24 Sedation for Refractory Symptoms and

25 Complementary and Alternative 39 Improving the Quality of Care Across

40 Long-Term Care 759

48 Palliative Chemotherapy and Clinical Trials in Part IX o]

62 Delivering Palliative Care in Challenging

63 A Community-Based Approach to Improving the

67 Understanding a Good Death: Jamess Story 1209

56 The Experience of the Nurse in End-of-Life

57 Ethical Considerations 1031 Index 1221

Paula R. Anderson, RN, MN

Marilyn Bookbinder, RN, PhD Margaret Campbell RN, PhD(c), FAAN

Kathleen Daretany, MA, APRN, BC-PCM Nancy English, PhD, APRN

Anna R. Du Pen, ARNP, MN Wayne L. Furman, MD

Denice Caraccia Economou, RN, MN, AOCN David F. Giansiracusa, MD

Tessa Goldsmith, MA, CCC/SLP Juhye Jin, RN, MS

Carole Kenner, DNS, RNC, FAAN Marcia Levetown, MD, FAAP

Kaye Norris, PhD Kathleen Puntillo, RN, DNSc, FAAN

Thomas J. Smith, MD, FACP Catherine Vena, PhD, RN

Introduction to Palliative Nursing Care

Advances in health care have changed the trajectory of dying.

(AIDS).2 It is also now recognized that the palliative care o]

pharmacologic interventions, nondrug treatments, and patient/

Hospice Palliative Care: A Model

Key Points Hospice is a program of care provided across a variety of set-

Community Palliative Care Bereavement/

Prenatal Decision Making Home Care Medicare Hospice Emergency Response

Comprehensive Hospice Model

Source: Jennings et al., 2003, reference 12.

Access to care expertise in both Additional professionals to help Professionals expert in

Miller SC, Egan KA (In Press), reference 42.

Landmark Task Work

Source: Byock (1996), reference 26.

Aspect The Caregivers Experience

Care-receiver: Sense of completion Care-receiver: Mr. Kent, the patient, wants

Hospice Medical Director. The hospice medical director is a

Emotional Arrival. Emotional arrival occurs within 9 to

Stage I Stage II Stage III Stage IV Stage V

Professional Increasing Deepening Acceptance of Rening professional