The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying

174 Pages·2000·12.82 MB·English

by  Stephen G. Post

The Moral Challenge
of Alzheimer Disease
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The Moral Challenge
of Alzheimer Disease
Ethical Issuesfiom Diagnosis
to Dying
S T E P H E N G . P O S T
The Johns Hopkins University Press
Baltimore and London
First edition published as The Moral Cballenge ofAlzbeimer Disease
0 1995, 2000 The Johns Hopkins University Press
All rights reserved. Second edition 2000
Printed in the United States of America on acid-free paper
987654321
The Johns Hopkins University Press
2715 North Charles Street
Baltimore, Maryland 21218-4363
www.press.jhu.edu
Library of Congress Cataloging-in-Publication Data
Post, Stephen Garrard, 1951-
The moral challenge of Alzheimer disease: ethical issues from diagnosis to dying /
Stephen G. Post.-2nd ed.
cm.
p.
Includes bibliographical references (p. ) and index.
ISBN 0-8018-6409-7 - ISBN 0-8018-6410-0 (pbk.)
1. Alzheimer's disease-Moral and ethical aspects. I. Title.
RCyq.P67 2000
362.1'96831-dc21 39-050625
A catalog record for this book is available from the British Library.
x Contents
Preface vii
Acknowledgments ix
The Moral Challenge of Alzheimer Disease: Defining
I
the Task I
2 The Family Caregiver: Partnership in Hope 20
Fairhill Guidelines on Ethics and the Care of People
3
with Alzheimer Disease, with Peter J. Whitehouse 44
Genetic Education for a Too-Hopeful Public 66
4
The Humane Goal: Enhancing the Well-being of Persons
5
with Dementia 78
6 Dying with Dignity: The Case against Artificial Nutrition
and Hydration, with Margaret M. Circirella 96
An Argument against Assisted Suicide and Euthanasia
7
in the Context of Progressive Dementia
OII
8 Toward a New Ethics of Dementia Care 127
References 143
Index 157
V
This Page Intentionally Left Blank
x Preface
This is a second edition of a work that has received wide critical ac-
claim and also has been appreciated by family caregivers. Since 1995,
however, when The Morul Challenge ofAlzheimer Diseuse was first pub-
lished, many relevant scientific and social changes have occurred. Fur-
ther, my own thinking has matured and evolved.
The reader will still find the terms that I coined in 1995, such as the
bias toward hypercognitive vulues, which adds stigma to dementia. A key
chapter on the ethics of artificial nutrition and hydration is now in-
cluded because this is a vexing issue for so many family caregivers and
professionals. The limited clinical usefulness of genetic testing at this
time, the affirmation of a hospice philosophy of care for persons in the
advanced stage of dementia, the assertion of the right to a natural death,
and other topics are new points of emphasis. Readers will find the book
helpful in answering a great many practical problems.
Chapter 3 is a full presentation of the Fairhill Guidelines, with new
focus-group material on cognitive-enhancing drugs. (A much abbrevi-
ated version of the guidelines was published earlier: “Fairhill Guidelines
on Ethics of the Care of People with Alzheimer‘s Disease: A Clinician’s
Summary,”J ournulof theA merican Geriutrics Society 43 [1995] : 1423- 29.)
Chapter 4 is essentially the same material that appears in my chapter by
the same title in S. G. Post and I? J. Whitehouse, eds., Genetic Testing
for Alzheimer Diseuse: Ethicul und Clinical Issues (Baltimore: Johns Hop-
kins University Press, 1998). My thoughts in chapter 7 have much
evolved from the earlier publication, “Physician-Assisted Suicide in
Alzheimer Disease,” Journal of the Americun Geriutrics Society 45 (1997):
647-
F
Since 1995, I have led a national ethics education initiative with
more than seventy chapters of the Alzheimer’s Disease and Related Dis-
orders Association (henceforth referred to as the Alzheimer’s Associa-
tion). I do not speak for the association, but everything I say is inspired
by its activities on behalf of the most deeply forgetful among us and their
families. What I have to say emerges from attentive listening to thou-
vii
viii Preface
sands of family members, professionals, and diagnosed individuals.
These people deal with, ofien quietly, one of the major public health
challenges of our aging society. It has been, and continues to be, an honor
to know and serve this altruistic network of caring advocates.
The views in this book, though defined and informed by dialogue
with the constituency of the Alzheimer’s Association, are nevertheless
my own. However, my arguments on ethics in the care of persons with
dementia are generally consistent with the various position statements
that the association has issued, and I often draw on those statements in
this text. I believe that ethics, to be meaningful, must begin with pub-
lic service to an identified constituency. In the process of service, one
learns about real-life experiences, one becomes an advocate, and, even-
tually, scholarship will flow. Grounded in service to and presence with
the neediest, such scholarship proves practical.
Acknowledgments
I thank the Cleveland Chapter of the Alzheimer’s Association for fa-
cilitating an estimated forty focus-group sessions on ethical issues with
family caregivers and persons with mild dementia. I am grateful to
Stephen McConnell, Ph.D., senior vice president for public policy of
the association, as well as his colleague in charge of chapter advocacy,
Michael Splaine, for facilitating my educational efforts with chapters
across the United States. Edward F. Truschke, president of the associa-
tion, has been a source of constant support. My fellow members of the
association’s National Ethics Advisory Panel have all been helpful con-
versation partners. And I thank the National Board of the association,
which in May 1998 awarded me a special recognition “for professional
outreach to the Alzheimer’s Association Chapters on ethics issues im-
portant to people with Alzheimer‘s and their families.”
I am much indebted to Joseph M. Foley, M.D., elder statesperson
of neurology, who, when I first arrived at Case Western Reserve Uni-
versity in 1988, guided me toward the needs of the most deeply forget-
ful, persons to whom he is devoted. Sharen K. Eckert, Executive Direc-
tor of the Cleveland Chapter, and Peter J. Whitehouse, M.D., Ph.D.,
are also high on the list of helpful colleagues. And thanks to Wendy
Harris, medical editor of The Johns Hopkins University Press, for urg-
ing me to complete this full revision, replete with various new chapters.
Finally, I thank the Cleveland Foundation, the Sihler Mental Health
Fund, the Alzheimer’s Association, and the National Institutes of Health
Human Genome Research Institute (R01 HGo1092-02S1) for support
along the way. I also want to express my profound appreciation to the
John Templeton Foundation and to the Becket Institute, located at St.
Hugh‘s College, Oxford, where I served for two summers as a senior re-
search fellow with Templeton Foundation support. I owe a great deal to
Kevin J. Hasson, president of the institute, and to Jonathan Rowland,
its director. Ultimately, this book is about liberty in the context of pro-
found altruism and about the freedom to live and die as well as one can
under the circumstances of dementia.
ix