Living in Death’s Shadow: Family Experiences of Terminal Care and Irreplaceable Loss

181 Pages·2017·1.82 MB·English

by  Emily K. Abel

Living in Death’s Shadow
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Living in Death’s Shadow
Family Experiences of Terminal Care
and Irreplaceable Loss
Emily K. Abel
JOHNS HOPKINS UNIVERSITY PRESS BALTIMORE
© 2017 Johns Hopkins University Press
All rights reserved. Published 2017
Printed in the United States of Amer i ca on acid- free paper
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Johns Hopkins University Press
2715 North Charles Street
Baltimore, Maryland 21218-4363
www . press . jhu . edu
Library of Congress Cataloging- in- Publication Data
Names: Abel, Emily K., author.
Title: Living in death’s shadow : family experiences of terminal care and
irreplaceable loss / Emily K. Abel.
Description: Baltimore : Johns Hopkins University Press, 2017. | Includes
bibliographical references and index.
Identifiers: LCCN 2016019645| ISBN 9781421421841 (hardcover : alk. paper) |
ISBN 1421421844 (hardcover : alk. paper) | ISBN 9781421421858 (electronic) |
ISBN 1421421852 (electronic)
Subjects: | MESH: Terminal Care | Grief | Attitude to Death | F amily Relations |
Chronic Disease— psy chol ogy | Caregivers— psy chol ogy | United States |
Personal Narratives
Classification: LCC R726.8 | NLM WB 310 | DDC 616.02/9— dc23
LC rec ord available at https:// lccn . loc . gov / 2016019645
A cata log rec ord for this book is available from the British Library.
Special discounts are available for bulk purchases of this book. For more information,
please contact Special Sales at 410-5 16-6 936 or specialsales@press . jhu . edu .
Johns Hopkins University Press uses environmentally friendly book materials,
including recycled text paper that is composed of at least 30  percent post- consumer
waste, whenever pos si ble.
Contents
Introduction 1
1 “The Human Touch”: Defining the Good Doctor 11
2 “Hope Became a Companion in Our Home”: Enrolling in
Clinical Trials 27
3 When Medicine Fails 54
4 Caring by Kin: Preventing Stress and Preserving Dignity 75
5 The Shadow Workforce in Hospitals and Nursing Homes 97
6 The Evolution of Hospice Care: Transforming the Role of Kin 117
Conclusion 134
Acknowl edgments 139
Notes 141
Index 167
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Living in Death’s Shadow
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Introduction
“Living for a long time with fatal illness is still a new cultural phe-
nomenon,” writes physician Joanne Lynn, “and we have much to learn
about how to make this time of life comfortable and rewarding for pa-
tients and families.” Because degenerative, chronic conditions have re-
placed acute diseases as the major cause of mortality, large numbers of
people live in death’s shadow for months or years. “My father started dying
twenty years before he actually died,” recalled one adult daughter. After
his heart attack and bypass surgery, the specter of his death “floated above
us at all times.” Such an experience has no place in the many recent mov-
ies, tele vi sion series, magazine articles, and books that have helped to
heighten popu lar awareness of the end of life. Debates about “do not resus-
citate” o rders, euthanasia, and the termination of life- prolonging technol-
ogies dominate the media, leaving little room for conversations about the
equally contentious and consequential issues that arise throughout the
long course of dying.1
Memoirs by kin (including families of choice as well as those of origin)
help to fill the knowledge gap. This book relies on 105 narratives by f amily
members of people who died from chronic disease after 1965. The chapters
examine the common experience of people confronting serious chronic dis-
ease, including learning the diagnosis, grappling with the decision whether
to enroll in a clinical trial, acknowledging the limits of medicine, receiving
care at home and in health care institutions, and, fi nally, obtaining pallia-
tive care. The book challenges three of the common assumptions that sur-
round stories of death and dying in the modern age. One is that patient
autonomy has steadily increased and that its expansion always represents
pro gress. Developments contributing to that belief include the demand
that physicians tell the truth about diagnoses and prognoses, the passage
of regulations mandating that physicians obtain permission from patients
for medical procedures, and the rapid expansion of both popu lar medical