Stories of sickness

310 Pages·2003·17.344 MB·English

by  Howard Maxson

Stories
of
Sickn
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Stonries
of
Sickness
Second Edition
HOWARD BRODY
OXPORD
UNIVERSITY PRESS
2003
OXFORD
Oxford New York
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Copyright 2003 by Oxford University Press, Inc.
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without the prior permission of Oxford University Press.
Brody, Howard.
Stories of sickness /
Howard Brody,—2nd cd.
p. cm.
Includes bibliographical references and index.
ISBN 0-1 9-5 15139-9 (cloth); ISBN 0-19-515140-2 (pbk)
1. Sick—Psychology.
2. Self-esteem.
3. Diseases in literature.
I. Title.
R726.5 -B76 2002
610—dc21 2002022448
2 4 6 8 9 7 53 I
Printed in the United States of America
on acid-free paper
Preface to the
Second Edition
In the early 1980s I read Alasdair Maclntyre's After Virtue and was particu-
larly struck by his assertion that we can have a comprehensible ethics only
when we understand human life as assuming the form of a narrative. As a
physician, I naturally asked what implications this narrative approach would
have for medicine. Maclntyre's narrative conception resonated with a forma-
tive experience I had enjoyed during my then-recently-completed residency
training. I recalled the evenings when we family practice residents had gath-
ered around the fireplace in the home of our department chair, "Dr. B." (who
belatedly assumes his rightful role in this edition, at the beginning of Chapter
11). We listened raptly as Dr. B. told stories about his twenty years of experi-
ences as a small-town family physician in South Carolina. At some level I
must have wondered what we were doing there and why. We were training at
a prestigious Eastern university hospital, seeking to master the latest drugs,
technologies, and scientific breakthroughs. Patients did not tell us their sto-
ries; instead we took their medical histories. If anything remotely resembling
the concept of narrative entered our workday discussions, it was the dreaded
charge of "anecdote"—a pejorative term applied to out-of-date evidence that
ought to be supplanted with "real" scientific data from the latest medical jour-
nals. Why, then, did we residents gather so eagerly to hear Dr. B. present us
with "anecdotal evidence"? And what did our eagerness tell us about the true
nature of medical activity?
While the first edition of Stories of Sickness appeared with a 1987 publica-
v
vi Preface to the Second Edition
tion date, the bulk of the text was written in 1983 and 1984.1 believed at the
time that I was among a small handful of people who thought that narrative
was a concept important to medicine. Very little was yet in print on narrative
in medicine and health care, and narrative ethics was largely an unknown con-
cept. All of this had changed when I came to prepare this revised edition.
Today the challenge is not to find literature about narrative and narrative
ethics in health care, but to be selective in choosing the most essential works
so that a book like this does not become unwieldy. I have extensively revised
each chapter to try to bring the text up to date. I have retained most of my ear-
lier material analyzing literary stories of sickness but have also tried to sup-
plement the book with further examples drawn from nonfiction.
The book is organized into two large sections. The first part, consisting of
Chapters 1 through 10, might be called "narrative in health care," while the
second part, Chapters 11 through 15, could be termed "narrative ethics in
health care." Chapter 1 investigates the relationships between storytelling and
healing—how the practice of medicine can be seen in part as a storytelling en-
terprise, and how the telling of stories can be seen as a social activity that can
serve a healing function. Chapter 2 addresses what we mean by "story" and a
variety of complexities that attend the notion of a narrative.
The next two chapters lay out a philosophical analysis of some key con-
cepts that will, in turn, suggest the questions to ask of the narratives that we
will study later on. Chapter 3 looks at the notion of sickness and asks: How
can sickness be defined? What aspects of sickness must be understood in
order to fully understand the concept? What are the various impacts that sick-
ness has on persons? Chapter 4 deals with the concepts of self-respect and
plans of life. Here the questions are: What does it mean for a person to have
self-respect? How is self-respect related to having a life plan? How are life
plans altered by sickness? What does this then do to the person's self-re-
spect? In what sense, and to what extent, do these individual issues depend
upon social interaction? The conclusions of these two philosophical chapters
are that previous investigations into the philosophy of medicine have been
hampered by an over-reliance on abstract conceptual analysis, and that the
gaps that result can best be filled by looking at specific stories with detailed,
particularistic content.
Chapter 5 discusses further how best to read the literary works we will be
turning to, being aware of the metaphorical use of illness in literature so that
we can be alert to whether an author is describing a case history of sickness in
the sense relevant to our investigation or is using sickness in a solely
metaphorical manner, in which case a literal reading of the events of the story
will lead to misunderstanding. We also review proposed typologies of sick-
ness narratives.
Chapter 6 analyzes two grand novels about sickness, Thomas Mann's The
Preface to the Second Edition vii
Magic Mountain and Aleksandr Solzhenitsyn's The Cancer Ward. These nov-
els prove useful as a catalog of sorts, of how sickness may have an impact on
different persons' life plans, life stories, and self-respect. They also depict a
variety of sick roles and the "practices" that define how sick people are ex-
pected to behave by themselves and by their healthy peers. Chapter 7 ad-
dresses how one's sense of time and space is altered by sickness and how
sickness can lead to contradictory impulses—toward solitude and toward
greater reliance on social relationships. Chapter 8 looks at how others judge
the sick individual and how sickness affects relationships with others. Chap-
ter 9 focuses on some special issues related to more or less permanent disabil-
ity. Chapter 10 looks at some ways of being sick that are often judged mal-
adaptive and asks how such a judgment can be justified.
Chapters 11 through 13 begin the section on narrative ethics by asking four
main questions. What exactly is meant today by "narrative ethics"? Why have
skeptics attacked this idea? How does one actually do ethics in a narrative
vein? And how can judgments in narrative ethics be justified? Chapter 14
seeks to extend these ideas to specific questions in health-care ethics, focus-
ing on the idea of an individual's life span as an unfolding narrative, which
has important implications for the treatment of sick newborns and the elderly.
Chapter 15 looks at the relationship between patient and health-care profes-
sional as itself an unfolding narrative, and then proceeds to some concluding
observations.
Readers who have used the previous edition as a teaching text may wish to
note that the chapters that are almost entirely new in this edition are Chapters
2, 11, 12, and 13; Chapter 15 has also been largely reworked. Chapters 9 and
10 of this edition cover material that formed only one chapter of the earlier
edition, expanded so as to do more justice to issues of disability.
H. B.
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Acknowledgments for
the Second Edition
While I remain grateful to the many people who aided me with the first edi-
tion of this book, I will here recognize particularly those who provided im-
portant ideas or assistance in the process of revision.
It is both nostalgic and embarrassing to reread my acknowledgments to the
first edition, in which I stated that I did not have to go away on sabbatical to
write that sort of book. The busyness of academic and medical life have now
forced me to join the vast majority, who cannot complete a project of this
magnitude without some time released from their normal duties. This new
edition would not now be complete without the Center for Ideas and Society
at the University of California at Riverside, who generously supported me for
six months in 2001 and allowed me almost totally unencumbered time to
work on this and several other projects. I am grateful to the Director, Emory
Elliott; his most helpful staff, Laura Lara, Marilyn Davis, Trudy Cohen, and
Antonette Toney; and the faculty at Riverside with whom I met as a seminar
group, M. Robin DiMatteo, Kathleen Montgomery, June O'Connor, Yenna
Wu, and Patrick Giordani. While at Riverside I presented some of my new
material on narrative ethics before the bioethics group at nearby Loma Linda
University, and I thank James Walters, Gerald Winslow, and their colleagues
for that opportunity and for their critical feedback.
At Michigan State University, I was aided and stimulated by the formation
of a narrative ethics interest group, including Hilde and James Lindemann
Nelson, Martin Benjamin, Gregg VandeKieft, Harriet Squier, Yon DeVries,
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