Handbook for Mortals. Guidance for People Facing Serious Illness

317 Pages·1999·3.962 MB·English

by  Joanne Lynn, Joan Harrold, Janice Lynch Schuster

Handbook
for Mortals
This page intentionally left blank
Joanne Lynn, MD
Joan Harrold, MD
Janice Lynch Schuster, MFA
Second Edition
Handbook
for Mor tals
GUIDANCE

FOR PEOPLE
FACING SERIOUS
ILLNESS
1
1

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____________________________________________
Library of Congress Cataloging-in-Publication Data
Lynn, Joanne, 1951-
Handbook for mortals : guidance for people facing serious illness / Joanne Lynn, Joan Harrold,
Janice Lynch Schuster. — 2nd ed.
p. ; cm.
Rev. ed. of: Handbook for mortals / Joanne Lynn, Joan Harrold, and the Center to Improve
Care of the Dying, George Washington University. 1999.
Includes bibliographical references and index.
ISBN 978-0-19-974456-5 (paper : alk. paper) 1. Catastrophic illness—Popular works.
2. Terminally ill—Popular works. 3. Death—Popular works. 4. Terminal care—Popular works.
I. Harrold, Joan K. II. Schuster, Janice Lynch. III. Handbook for mortals. IV. Title.
[DNLM: 1. Terminal Care—Popular Works. 2. Advance Care Planning—Popular Works.
3. Attitude to Death—Popular Works. 4. Patient Education as Topic—Popular Works.
5. Terminally Ill—psychology—Popular Works. WB 310 L989h 2011]
R726.8.H353 2011
362.17'5—dc22
2010025271
____________________________________________
9 8 7 6 5 4 3 2 1
Printed in the United States of America
on acid-free paper
About This Book
Many people have been involved in the writing and editing of this second
edition of Handbook for Mortals , the original version of which resulted from an
extraordinary collaboration of professional caregivers, scholars, and ordinary
citizens. Th e original edition benefi ted from the insights and comments of
more than two hundred people. We remain grateful to them for their contribu-
tion. Among us, we have cared for thousands of people who died. Among us
also are some well-known scholars in art, literature, and health care research.
Th is edition owes much to the generosity and support of Altarum Institute,
a nonprofi t health systems research and consulting institute, which is launch-
ing a major initiative to improve care for people living with serious chronic
illness associated with aging. Th e original edition was made possible with
funding from the Alfred P. Sloan Foundation of New York City. Th e Retirement
Research Foundation of Chicago, Illinois, supported development of a com-
panion book for health care managers and policymakers, and that simultane-
ous work enriched this book. Th e Oxford University Press and especially our
editors, Joan Bossert and Abby Gross, have been most supportive, fl exible,
and effi cient. We note with gratitude the guidance and commitment of James
Levine, our literary agent. We appreciate the dedication of Les Morgan, who
has been instrumental in posting this book on the Web. Th anks also to Larry
Beresford for research support. We thank Conor Fowler and Joanna Ng for
serving as editorial assistants to this project.
Many colleagues and readers have sent us stories and insights for this book.
We are grateful to you for opening your hearts and for reminding us why this
work is essential. We invite readers to share by emailing [email protected].
We thank you.
FOR THE FIRST AND SECOND EDITIONS
BASED ON THE COMBINED CONTRIBUTION OF THE FOLLOWING INDIVIDUALS:
Joanne Lynn, M.D., Center to Improve Care of the Dying
Joan K. Harrold, M.D., Hospice of Lancaster County (Lancaster, PA)
Sandra Bertman, Ph.D., University of Massachusetts Medical Center (Worcester, MA)
Gwen Glesmann, Pensaré Design Group, Ltd.
Janice Lynch Schuster, Altarum Institute
Joel D. Smith, Center to Improve Care of the Dying
Mary Ellen Vehlow, Pensaré Design Group, Ltd.
Conor Fowler, University of Maryland, Baltimore County
DRAFTING AND RESEARCH AT GEORGE WASHINGTON UNIVERSITY
Anne Boling Brian Green Katalin Roth
Felicia Cohn Phil Higgins Mary Ryan
Rachel Duvack Jill Joseph Phyllis Schmitz
Janet Heald Forlini Nicole Makosky Lisa Spear
Nancy Freeborne Kristen McNiff Anne Wilkinson
DRAFTING AND RESEARCH CONTRIBUTORS
Larry Beresford, San Francisco, CA
Rev. Timothy Cherry, Coppell, TX
Rabbi Kenneth L. Cohen, Bethesda, MD
Rev. Hank Dunn, Hospice of Northern Virginia
Marcia Levetown, M.D., Galveston, TX
Cherri McKenzie, McLean, VA
Casey Milne, Resource Connectors, Ltd., Portland, OR
Debra Nichols, M.D., Pittsburgh, PA
LITERARY AND VISUAL IMAGES
Lois LaCivita Nixon, Ph.D., Tampa, FL
Marilyn Field, Ph.D., Washington, DC
Michael Lipson, Ph.D., New York, NY
Ronald Carson, Ph.D., Galveston, TX
Digital CLAY Interactive, Ltd.
FOCUS GROUPS
Barbara Kreling, George Washington University Medical Center
Kyle Anne Kenney, George Washington University Medical Center
Susan W. Morris, Global Exchange, Bethesda, MD
WRITTEN CRITIQUES AND SUGGESTIONS
Janet Abrahm Harlan Krumholz Marian Secundy
Robert Arnold Kristie Martin Mary Sklencar
Marshall Chin Kyle Nash Harold Sox
Ann Armstrong-Dailey Michael Rich William Steinberg
Myron Ebersole Walter Robinson James Tulsky
Ted Greenwood Ellen Rooney Marilyn Webb
Patti Homan Diane Rule Doron Weber
Hana Janjigian Greg Sachs
ADDITIONAL INFORMATION AND INSIGHT
Susan A. Berger Patricia Bomba Denise Brown Beverly Cummings
Deborah L. Grassman Karl Lorenz Christina Puchalski Charlie Sabatino
Contents
Foreword by Rosalynn Carter xiii
Introduction xv

1. Living with Serious Illness 3
Am I “living with” or “dying of”? 5
How we die—then and now 8
Practice, practice, practice 9
Planning for uncertainty 9
Th e power of words 11
Not particularly interested in dying… 12
Decisions to make, decisions to wait 13
No one “right way” 14

2. Enduring and Changing 15
Mourning your losses 18
Seeing yourself more clearly 21
Coping with changes in appearance 21
Taking care of yourself 22
Setting realistic goals 24
About relationships 25
Life is changing, but . . . 27
3. Finding Meaning 28
Religion and relationships 29
Meaning and loss 31
Finding your way to fi nding meaning 32
Chaplains and others who can help 32
4. Helping Family Make Decisions and Give Care 42
Families deciding together 44
Family caregiving 46
How can a caregiver know whether things are out of
control? 50
What to do when the caregiver is overwhelmed 50
How does a caregiver fi nd support groups? 51
Is it possible to help from a distance? 52
Is there anything good about caregiving? 52
5. Getting the Help You Need 54
How to fi nd help and advice 55
Getting the help of a care manager 56
Getting your wishes followed at home 56
When you have help in your home 57
What to do when things don’t go well 58
Mistreatment: what to do if anyone suspects mistreatment
or neglect 59
A guide to settings and services 61
Getting the help you need 67
6. Talking with Your Doctor 69
Know what you should expect from your doctor
(or physician’s assistant or nurse practitioner) 70
Getting the most out of each visit with your doctor 75
Talking with your doctor—special situations 77
When you are hesitant to ask questions 85
Doctors and hope 85
7. Controlling Pain 87
ts Types of pain 89
n
e Choosing the right pain medicine 92
t
n
o Diff erent ways to take pain medicine 96
C
viii
Doses of pain medicine 98
A few rules about pain management 100
How oft en to take pain medicine 102
Fear of addiction 102
Side eff ects of pain medications 104
More medications that relieve pain 105
8. Managing Other Symptoms 109
“I feel very short of breath, as if I just can’t breathe” 109
“I just can’t eat” 114
“What are bed sores and how can I prevent them?” 116
“I want to stay awake; there’s so much yet to do” 116
“Sometimes I just don’t feel like doing anything” 118
“I’m just so anxious about things. Sometimes I even feel
panicked.” 119
“Should I be worried about getting confused or just
being ‘out of it’?” 119
“Remind me—can anything good happen?” 120
9. Living with Specifi c Illnesses 121
How long do I have? 122
Heart disease 124
Cancer 127
Lung disease: emphysema and chronic bronchitis 130
Kidney failure 134
Liver failure 136
HIV/AIDS 138
Special concerns for survivors of war and trauma 141
Dementia 142
Dying in very old age 145
10. Planning Ahead 150
Why do I need someone to speak for me? 151
“What should I keep in mind when choosing a
proxy?” 153
What if…? 158
I have strong views, but they aren’t about medical s
t
n
treatments! 159 e
t
n
How can I be sure my choices will be followed? 160 o
C
ix