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    Twice Dead: Organ Transplants and the Reinvention of Death
    Twice Dead: Organ Transplants and the Reinvention of Death
    Twice Dead: Organ Transplants and the Reinvention of Death
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    Twice Dead: Organ Transplants and the Reinvention of Death

    By Margaret M. Lock

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    Tales about organ transplants appear in mythology and folk stories, and surface in documents from medieval times, but only during the past twenty years has medical knowledge and technology been sufficiently advanced for surgeons to perform thousands of transplants each year. In the majority of cases individuals diagnosed as "brain dead" are the source of the organs without which transplants could not take place. In this compelling and provocative examination, Margaret Lock traces the discourse over the past thirty years that contributed to the locating of a new criterion of death in the brain, and its routinization in clinical practice in North America. She compares this situation with that in Japan where, despite the availability of the necessary technology and expertise, brain death was legally recognized only in 1997, and then under limited and contested circumstances. Twice Dead explores the cultural, historical, political, and clinical reasons for the ready acceptance of the new criterion of death in North America and its rejection, until recently, in Japan, with the result that organ transplantation has been severely restricted in that country. This incisive and timely discussion demonstrates that death is not self-evident, that the space between life and death is historically and culturally constructed, fluid, multiple, and open to dispute.

    In addition to an analysis of that professional literature on and popular representations of the subject, Lock draws on extensive interviews conducted over ten years with physicians working in intensive care units, transplant surgeons, organ recipients, donor families, members of the general public in both Japan and North America, and political activists in Japan opposed to the recognition of brain death. By showing that death can never be understood merely as a biological event, and that cultural, medical, legal, and political dimensions are inevitably implicated in the invention of brain death, Twice Dead confronts one of the most troubling questions of our era.
    LanguageEnglish
    PublisherUniversity of California Press
    Release dateDec 1, 2001
    ISBN9780520926714
    Twice Dead: Organ Transplants and the Reinvention of Death
    Author

    Margaret M. Lock

    Margaret Lock is Professor of Anthropology at McGill University and author of the award-winning Encounters with Aging: Mythologies of Menopause in Japan and North America (1993) and East Asian Medicine in Urban Japan: Varieties of Medical Experience(1980), both from California. Among the books she has coedited are Remaking a World (2001), Social Suffering (1997), and Knowledge, Power, and Practice(1993), all from California. In December 2003, she was awarded the Robert B. Textor and Family Prize for Excellence in Anticipatory Anthropology, of the American Anthropology Association.

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      In Twice Dead: Organ Transplants and the Reinvention of Death, Margaret Lock “explores the way in which developments in medical technology have forced a reconsideration of the recognized boundaries between life and death, and how these debates reflect deeply held social values and political interests” (pg. 2). Lock examines these boundaries and how they affect social values and politics through a comparison of organ transplants in Japan and in Western countries, such as the United States and Canada. In describing the Japanese response, Lock writes, “The majority of Japanese with whom I have talked about brain death dismiss arguments that reify Japanese tradition” (pg. 5). On the other hand, “in North America, discussion about brain death has been limited for the most part to a small group of doctors and an even smaller group of lawyers and intellectuals,” though the debate rarely focuses on “the contribution to culture” (pg. 7). Finally, Lock establishes the “living cadaver” as a category to describe those who suffer brain death yet are kept alive by artificial means (pg. 1). This category plays a crucial role in her argument.Discussing the conflict over brain-death as a category in Japan, Lock argues, “The culture of tradition is self-consciously put to work to aid those opposed to the recognition of brain death” (pg. 11). In the West, however, acceptance of brain-death was not a foregone conclusion as it forces one to consider what defines a person, either their physical living body or their consciousness (pg. 37). Lock writes, “Cerebral death confronts us with yet another ambiguous life-form that until recently was imaginable only in science fiction. The determination of cerebral death is made on the basis of an irreversible loss of consciousness” (pg. 119). This goes further to define the limits of what qualifies as death, either physical or social. In the West, concepts of brain-death limit death to a physical, quantifiable event, whereas in Japan, death exists as a social occurrence involving the relationships of the person and their family (pg. 183). The machinery that prolongs life also plays a role in defining the limits of humanity. Lock writes that the machinery of artificial respiration displaces the personhood of the patients , though in Japan, “some people may conceptualize machine and human as working in partnership, creating an animated hybrid that can overcome all odds” (pg. 370). Further, examining the role of organ transplant in a gift system, Lock cites Marcel Mauss, who concluded, “all gifts carry reciprocal expectations, and gift exchange is a means of establishing lifelong commitments that create the structure of social institutions and their hierarchies” (pg. 315). This creates a host of problems in Japanese society, where gift giving involves culturally ingrained practices that recipients cannot follow through on since the donor is deceased. Even when the donor is not anonymous, the recipient fears lifelong obligation to the family that they cannot repay. Even in the West, organs are fetishized, imbued with personality about the “gender, ethnicity, skin color, personality, and social status of their donors” (pg. 320). Even the process of keeping an organ alive apart from the body defies traditional conventions of the body.

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    Twice Dead - Margaret M. Lock

    Twice Dead

    CALIFORNIA SERIES IN PUBLIC ANTHROPOLOGY

    The California Series in Public Anthropology emphasizes the anthropologist’s role as an engaged intellectual. It continues anthropology’s commitment to being an ethnographic witness, to describing, in human terms, how life is lived beyond the borders of many readers’ experiences. But it also adds a commitment, through ethnography, to reframing the terms of public debate—transforming received, accepted understandings of social issues with new insights, new framings.

    Series Editor: Robert Borofsky (Hawaii Pacific)

    Contributing Editors: Nancy Scheper-Hughes (UC Berkeley), Philippe Bourgois (UC San Francisco), and Arturo Escobar (University of North Carolina)

    University of California Press Editor: Naomi Schneider

    1.  Twice Dead: Organ Transplants and the Reinvention of Death, by Margaret Lock

    Twice Dead

    Organ Transplants and the

    Reinvention of Death

    Margaret Lock

    University of California Press

    Berkeley and Los Angeles, California

    University of California Press, Ltd.

    London, England

    © 2002 by the Regents of the University of California

    Grateful acknowledgment is made for permission to quote from Richard Selzer’s Raising the Dead: A Doctor’s Encounter with His Own Mortality (New York: Viking, 1993); letters by Thomas J. Poulton and Gregory Liptak in Journal of the American Medical Association 255 (April 18, 1986): 2028, copyrighted 1986, American Medical Association; and Mark Kennedy’s Brain Dead Donors ‘Alive’: MDs Debate Ethics of Transplant, Ottawa Citizen, March 3, 1999.

    Library of Congress Cataloging-in-Publication Data

    Lock, Margaret M.

    Twice dead : organ transplants and the reinvention of death / by

    Margaret Lock.

    p. cm. — (California series in public anthropology; 1)

    Includes bibliographical references and index.

    ISBN 0-520-22605-4 — ISBN 0-520-22814-6

    1. Transplantation of organs, tissues, etc.—Japan. 2.

    Transplantation of organs, tissues, etc.—North America. 3. Brain

    death—Japan. 4. Brain death—North America. I. Title. II. Series.

      QP89 .L63 2002

        617.9′5′0952—dc21

    2001004110

    Printed in the United States of America

    10   09   08   07   06   05   04   03   02

    10    9   8   7   6    5   4   3   2   1

    The paper used in this publication meets the minimum requirements

    of American National Standard for Information Sciences

    Permanence of Paper for Printed Library Materials, ANSI

    Z39.48–1984.

    To the memory of Nakawaga Yonezō

    Contents

    List of Illustrations

    Acknowledgments

    Preamble: Accidental Death

    Trauma

    The Procurement

    The Gift

    Death’s Shadow

    1. Boundary Transgressions and Moral Uncertainty

    Reanimation

    2. Technology in Extremis

    Narrow Escapes

    3. Locating the Moment of Death

    Jumping the Gun

    4. Making the New Death Uniform

    Tragedy

    5. Japan and the Brain-Death Problem

    Aggressive Harvesting

    6. Technology as Other: Japanese Modernity and Technology

    Born of a Brain-Dead Mother

    7. Prevailing against Inertia: An Interim Resolution to the Brain-Death Debate

    Becoming a Good Angel

    8. Social Death and Situated Departures

    Disconcerting Movements

    9. Imagined Continuities: On Becoming an Ancestor

    Memory Work

    10. When Bodies Outlive Persons

    Procurement Anxiety

    11. When Persons Linger in Bodies

    Transcendence through Music

    12. The Body Transcendent

    A Court Order

    13. The Social Life of Human Organs

    A Reliable Man

    An Unsatisfactory Intelligence

    14. Revisiting Vivisection in a World Short of Organs

    A Dubious Definition of Death

    Reflections

    Bibliography

    Index

    Illustrations

    The accident

    The iron lung

    The artificial ventilator

    Functional flow diagram for Servo ventilator 900B

    Technology in the ICU

    Averting premature burial

    Donor and recipient of the world’s first heart transplant

    Christiaan Barnard and Pieter Smith

    A healthy donor

    Midsagittal section of Colin’s brain

    The Wada case

    Education for children about brain death and donor cards

    Two deaths

    Japanese organ donor card

    Brain death

    Shokubutsu ningen (a plant person)

    The good death

    Body snatching: Burke and Hare suffocating Mrs. Docherty

    American medical students at work on a cadaver, 1890

    Jeremy Bentham’s auto-icon

    Daddy, watercolor by three-year-old Ogata Ami, recipient of part of her father’s liver

    Acknowledgments

    Ethnographic research thrives by making impositions on people, and I owe a debt of gratitude to the busy individuals who gave generously of their time. Intensivists, neurologists, transplant surgeons, and intensive care nurses working in Japan, Canada, and the United States, and transplant coordinators from Québec Transplant, put up with intrusions into their already overworked days. Observing them at work in intensive care units and in operating rooms was a special privilege.

    Organ transplant recipients in Japan and Canada brought home the poignancy of this research when they permitted me to enter into their lives. I am especially grateful to those who had dealt with brain death in the family and who were willing to talk with me. Their courage is commendable, and I hope I have done justice to their accounts.

    Special thanks go to Vinh Kim Nguyen, colleague, informant, and friend, and to Frank Carnevale, whose interest and support are boundless. This book would be the poorer without their help. To Aikawa Atsushi, Akabayashi Akira, Awaya Tsuyoshi, Ikegami Naoki, Kawai Tatsuo, Robert Nelson, Nudeshima Jiro, Ota Kazuo, Sakakihara Yoichi, Jean Tchervenkov, Abe Tomoko, and Stuart Youngner I am indebted for valuable experiences and insights. Christina Honde was my first collaborator and coauthor on the brain-death problem. Her enthusiasm inspired me to go forward. In recent years, the members of the International Forum for Transplant Ethics have created a lively format for argumentative reflection, and my colleagues in the department of Social Studies of Medicine at McGill University have, as ever, been provocative and to the point in their criticisms.

    Readers of the manuscript without exception gave invaluable comments and constructive criticism. Lawrence Cohen, Judith Farquhar, Helen Hardacre, Susan Long, Robert Nelson, and Stuart Youngner all labored through earlier versions of this book, and I cannot thank them enough for their contribution to the final product.

    I have profited throughout this long endeavor from dedicated research assistants, who also provided thoughtful reflections. June Kitanaka extended herself tirelessly on my behalf and, thanks to her, Kitanaka Kenji, Toki Nobuko, Kawazoe Hiroko, and Doi Machi kindly undertook to do last-minute revisions on Japanese sources. In earlier years, Mukai Keiko, Nukaga Yoshio, and Kanaba Miuki put in generous amounts of time. Stella Zoccali helped me in maintaining some semblance of control over the final stages of preparation of this book. Heartfelt thanks also go to Naomi Schneider, Sue Heinemann, and Erika Büky, at the University of California Press, and to Rob Borofsky, the series editor.

    While writing the manuscript I was privileged at various times to be resident at the Rockefeller Foundation Center at Bellagio, associated with the anthropology and ethnomedicine departments at the University of Vienna, and the Neilson professor at Smith College in Northampton, Massachusetts. Each of these locations provided a unique space for reflection.

    The Social Science and Humanities Research Council of Canada provided six years of funding for this research. Their support is gratefully acknowledged.

    Richard as usual kept things centered.

    Preamble

    Accidental Death

    Technology has extended and widened the notion of the accident. . . . Accidents are part of our daily life and their shadows people our dreams.

    Octavio Paz, Conjunctions and Disjunctions

    This book does not make for comfortable reading. Some readers will find the subject macabre, even repulsive, for the focus is on death and the harvesting or, in the prevailing euphemism, procurement of organs for transplant. Stories about organ transplants appear in mythology and folktales, as well as in documents from medieval times (Barkan), but only during the past twenty years have medical knowledge and technology advanced sufficiently for organ transplantation to become routine, with surgeons performing thousands of operations each year. In the majority of cases, the transplanted organs come from the bodies of individuals diagnosed as brain-dead.

    A living cadaver, as the brain-dead were first called, is created by an accident and sustained by medical technology. Major injury to the brain must occur, whether caused by an automobile or motorcycle crash, a drowning, smoke inhalation, a major blow to the head, a cerebral accident (stroke) in which the brain suddenly floods with blood, or some act of violence, such as a gunshot wound. Most victims of severe head trauma are kept alive by a relatively simple piece of technology—the artificial ventilator. Solid organ transplants,¹ which depend on the procurement of organs from brain-dead patients, could not have been institutionalized without the existence of the ventilator and other life-support technologies. But this coincidence of new technologies and living bodies, some with irreversibly damaged brains, could not alone mean that organs could then be procured from these new entities: a new death had to be legally recognized before commodification of the brain-dead could come about.

    The accident. Reproduced by permission of The Gazette, Montreal.

    Although clinical treatment for trauma is similar in virtually all countries where the necessary medical facilities are present, and the term brain death is used universally today, the consequences of this diagnosis vary considerably. Brain death is not necessarily equated with the death of individuals. This book explores the way in which developments in medical technology have forced a reconsideration of the recognized boundaries between life and death, and how these debates reflect deeply held social values and political interests. It is striking that in Japan, in contrast to North America and most of Europe, recognition of brain death as human death has proved to be an exceedingly contentious issue. By exploring in parallel the situation in North America and Japan, I hope to force some reflection about this problem in both locations: the one where the recognition of the new death was accomplished relatively smoothly and the other where it continues to prove deeply problematic. Quite simply, in the presence of advanced medical technologies, there remains disagreement as to what constitutes death, and little reason to believe that lasting resolution to the matter is in sight. While this situation exists, we cannot feel completely at ease about organ transplants that make use of brain-dead donors, although I am certainly not suggesting that we stop the practice.

    I first became interested in brain death about ten years ago, while doing research in Japan on an entirely different topic. The subject was being discussed exhaustively in the Japanese media. Articles often included the results of polls inquiring whether the public was willing to accept brain death as the end of human life, and how people felt about organ donation from brain-dead patients. In the technologically sophisticated, literate economic superpower of Japan, the idea of this new death was clearly setting off alarm bells. Yet aside from an initial flurry after the first heart transplant in 1967, no similar concern has been apparent in North America or in most of Europe, where the media seem relatively untroubled by doubts as to whether brain death constitutes the end of life; instead, they focus on the saving of lives through organ transplants from brain-dead donors. The only worry is about a shortage of organs, the bittersweet outcome of success.

    At first I limited my attention to the debate in Japan, where the brain-death problem, as it is known there, has been the most contentious ethical debate of the last thirty years. Although the concept of brain death was medically recognized more than twenty years ago, and the diagnosis is used regularly in clinical practice, this condition was legally recognized as death in Japan only in 1997. Even now, brain death is equated with death only when patients have specified in writing that they wish to become organ donors and their families do not overrule these wishes. Brain-dead individuals who have not indicated that they want to become donors are not considered legally dead. As of the end of 2000, organs for transplant had been procured from only nine brain-dead donors in Japan; the organs from a tenth donor proved to be unusable.

    In North America, by contrast, organs for transplant can be removed from bodies legally recognized as dead (including anyone diagnosed as brain-dead) if the individual’s wish to become a donor can be reasonably assured. In theory, families may not overrule this intent. In several European countries, presumed consent allows transplant teams to procure organs from every brain-dead patient unless an individual has explicitly opted out of organ donation by signing a document to that effect.

    After presenting my research findings from Japan to a variety of North American audiences, it became evident that many people still assumed that the Japanese response to the new technologically created death is an anachronism, associated with religious beliefs and deeply rooted cultural traditions. Such assumptions persisted despite my energetic attempts to dispel this misconception. This prejudice highlighted two important and perplexing questions: in Japan, why did brain death become recognized as the end of life only very recently, and even then inconclusively? And why are organ transplants not perceived as an unequivocal good? Although shared values of long standing do indeed contribute to the debate, Japanese responses are exceedingly complex and defy any simple explanation.

    Examination of the Japanese response raises another crucial question: why did we in the West accept the remaking of death by medical professionals with so little public discussion? The gift of life is a seductive metaphor, one that now seems natural to us, and it has proved effective in promoting the donation of human organs for transplant, but in adopting it we have glossed over questions about the source of these organs. Aside from discussion in a few academic and medical forums, we have chosen not to enter into debate about the new death.

    Death would seem to admit of little ideological posturing, at least as an indisputable biological event. I suspect that the majority of us raised in the dominant traditions of Europe and North America understand death as an unambiguous, easily definable point of no return. Certainly the media lead us to think that this is the case. In contrast, discussion of brain death in Japan has caused considerable social angst, even though Japan, for the most part a secular society, is driven by the principles of rational order and scientific progress associated with modernization. What is more, many people in Japan apparently do not understand death as a straightforward event affecting only the physical body.

    Clearly, these differences cannot be explained by a Japanese lack of education, technology, skills, or economic resources. Japan, in fact, utilizes and exports more complex medical technology than any other nation in the world. So culture must be at work, we assume, and we tend, as I did when I started this project, to look for features of Japanese, rather than North American, culture to account for this discrepancy. What concerns make Japanese resistant to the concept of a new death based on the condition of the brain? Is the difference to be found in attitudes towards nature—specifically, in a concern about tinkering with the bodies of the dying and the dead? Is Japan perhaps not as secular and rational, not as modern, as its outward trappings lead us to believe? Are the majority of people in Japan unwilling to treat the body objectively, especially the body in death, as seems to be done in North America? An assumption implicit in this line of interrogation is that a secular society will strive to save lives if the technology is available. Hence we turn all too easily to searching for the relics of tradition, survivals from an archaic past lurking in Japanese modernity, that might account for this anomaly.

    Several vocal Japanese commentators have invoked tradition when accounting for the reluctance to recognize brain death in their country, but they usually embrace an essentialized notion of culture as a positive force, one that protects the nation from unwanted change. These individuals draw on ideas and behaviors that they think of as uniquely Japanese, including characteristic ways in which human life and bodies after death are valued. They contrast this situation favorably with the perceived cultural vacuum of America, a nation overly preoccupied with individualism and insufficiently with history. This dearth of culture, in their opinion, facilitates the implementation of medical technology without regard to ethical and moral implications. These commentators are insistent that Japan should not simply ape the Other of the West but should strive instead to ensure that contemporary moral order is infused with values associated with Japanese tradition.

    The majority of Japanese with whom I have talked about brain death dismiss arguments that reify Japanese tradition. Nevertheless, many suggest that values common to a large number of Japanese, such as a concern about desecration of dead bodies, partially account for a resistance to a recognition of brain death as human death. But they make no claims about the uniqueness of their culture, nor do they assume that it is monolithic. On the contrary, they cite polls indicating that around half of the nation supports recognition of brain death in theory. Rather than focus on Japanese resistance, many of these individuals comment on the culture of the West. They suggest that the Christian tradition of charity has facilitated a willingness to donate organs to strangers, often adding that altruism is not well-developed in Japan.

    Some academics and cultural commentators take yet another position. They argue that culture, by which they mean the culture of tradition, is irrelevant to the impasse. Modern society is, by their definition, secular and rational and freed from culture, except of course for the high culture of the arts and the postmodern culture of fusion, into which aspects of tradition are selectively and self-consciously incorporated. Pockets of backwardness inevitably remain in any society, but these are, they assume, fast disappearing.

    These commentators assert instead that patients rightly fear being subjected to abuses of medical power, especially when dying. People believe that their lives will be shortened by the medical profession’s hunger for their organs. It is public mistrust of the medical profession that largely accounts for resistance to recognition of brain death as the end of human life. This group of critics, many of whom denounce technological imperialism, also question the accuracy of the scientific discourse about brain death. Such concerns are not limited to Japan, but in Europe and North America only a minority has voiced them. Other Japanese, among them a good number of physicians and people waiting for transplants, lament that transplant technology is not freely available in Japan. They often describe their country as backward, irrational, and unreasonable in this respect. By no means does everyone in Japan fit neatly into this range of responses; some people change their opinions over time, and others maintain positions that are apparently contradictory.²

    In North America, discussion about brain death has been limited for the most part to a small group of doctors and an even smaller group of lawyers and intellectuals. The contribution of culture to this debate is virtually never raised, except perhaps to account for a perceived lack of cooperation among certain minority groups with the donation of organs. Periodically the debate has leaked into the media, usually when something newsworthy happens in connection with organ transplants. These reports are almost always positive and laudatory of medical heroics. Rarely has the assessment of brain death or the actual procurement of organs been given more than fleeting coverage.

    Discussion of the institutionalization and legitimization of brain death as the end of human life, followed by its routinization across North America and much of Europe, has been dominated by two lines of thought. The first attempts to assign death to a scientifically deducible and verifiable moment, and thus to make it at once indisputable in medicine and recognizable in law. However, professional consensus has been lacking as to whether death is a moment or a process and how best to determine when it occurs. No consensus exists even as to whether a definition of death should be applicable to all living forms or whether there can be a death unique to humans.

    Until the late 1960s this long-standing professional controversy had little effect on determining the death of individual patients, the precise timing of which is usually not important unless foul play is suspected. With the development of critical-care medicine, it became imperative to decide if and when it would be appropriate to discontinue life support for patients who were expected never to recover—who were in an irreversible condition that could end only in biological death. During the same period, organ transplants were becoming increasingly common. Particularly after the world’s first heart transplant in 1967, many recognized that doomed patients on life support represented potential organ sources. However, these patients could not be diagnosed as dead in the usual way because their hearts were still beating, sustained by the ventilator. Doctors urgently needed to be able to formally declare death so that organs could be removed from brain-dead patients without legal repercussions. A new definition for death had to be established, one that located death in the brain; and its criteria needed to be uniform and objective.

    The second line of argument about the new death, put forward most frequently by philosophers and bioethicists, is that if there is no possibility for cognitive function in an individual because of irreversible damage to the upper brain, then that person can be pronounced as no longer having any individual interest. Such patients are neither clinically nor legally brain-dead because the lower brain remains intact. Nevertheless, supporters of higher brain death argue that because they will never recover consciousness, these patients are good-as-dead. This argument is not widely accepted by members of the medical profession and has not gained legal recognition anywhere, but it is increasingly being given serious consideration, for reasons that will be made clear.

    In Japan, different sets of assumptions about death make it difficult to construct arguments reduced either to questions of scientific accuracy or to the demise of an individual. Efforts to assign death scientifically to a specific moment are frequently rejected outright by both medical and lay people. Dying is widely understood as a process, and cannot therefore be isolated as a moment. What is more, the cognitive status of the patient is of secondary importance for most people. If biological life clearly remains, even if an individual suffers from an irreversible loss of consciousness, many people do not recognize that individual as dead.

    Most important, death in Japan represents more than the extinction of individual bodies: it is above all a familial and social occasion. Even when medically determined, death becomes final only when the family accepts it as such. It is not surprising, therefore, that in Japan it has proved very difficult to represent brain-dead patients as cadaverlike. In addition, many people repudiate the idea of tampering with newly dead bodies.

    Of course, these values and behaviors can be conveniently glossed as cultural, and it is to such phenomena that Japanese refer when they argue that culture is implicated in the brain-death problem. But most people do not then go on, as does a minority conservative element in Japan, to incite nationalist sentiment by arguing that recognition of brain death goes against that which is timeless and natural to Japanese.

    Setting aside the rejoinders of active nationalists, are the responses of most Japanese so remarkable? People anywhere, when actually confronted with a brain-dead body, may find it hard to think of the person as dead, because the body exhibits many signs of life. Only if the idea of the person is clearly confined to mind and brain can the destruction of the brain be equated with the death of an individual. On the other hand, if the concept of the person is diffused throughout the body, or even extends outside the body, then destruction of the brain is not easily reckoned as signifying death.

    Influential individuals in Japan have drawn on what they believe are widely shared values to encourage doubt as to whether a brain-dead patient is indeed dead. These same doubts are widely disseminated in the media. The public debate, for many years biased against recognition of brain death, has ensured that a diagnosis of brain death has not displaced the view that death cannot be pinpointed in time, nor located in the brain. Cultural sentiments have been mobilized for political ends.

    The Japanese legal profession has been opposed all along to recognition of brain death, making it unlikely that the concept would gain easy acceptance. And although the legal status of the corpse is not clearly defined, civil court decisions have nevertheless affirmed that those who conduct the burial rites and will directly succeed the deceased have rights over the body (Machino 1996:108). It is widely assumed that the family should make the final decision about donation, even overriding expressed wishes of the individual.

    In clinical settings, in addition to the necessary technology, a cluster of concepts and associated values must coexist to facilitate organ transplants from brain-dead bodies. First, a dead body must be recognized as alienable:³ specifically, this means it can be handed over or acquired for dismemberment for medical purposes. Commodification of the human body in the name of scientific progress has a long history in Europe and North America but a relatively short one in Japan.⁴

    Concern about use of medical resources and money is also important. When ventilator support of a brain-dead patient is interpreted as a waste, and continued care deemed futile, then it is a small step to visualizing how the body of such a patient, declared legally dead and therefore alienable, could be put to good medical use. Medical practitioners in Japan are less likely to subscribe to this utilitarian position than are clinicians and hospital administrators in North America. Health care expenditures in Japan have been rigorously controlled, and the single-tier socialized health care system accounts for a much smaller percentage of GNP than it does in the United States, Canada, or the United Kingdom (Campbell and Ikegami 1998). Pressure exists in Japan to eliminate waste in connection with medical activities, but the matter is not considered urgent because the health care system has not been permitted to be improvident. In any case, a brain-dead patient surrounded by a distraught family is very unlikely to be regarded as wasting scarce resources.

    In modern society, accidents have no satisfactory explanation and are particularly disturbing because they represent a loss of control. The argument that organ donation can make something worthwhile out of an apparently senseless death is therefore a persuasive one. Through the gift of life—the ultimate act of altruism—control is to some extent reasserted and the disruption created by the accident is partly corrected, making nameless strangers into heroes. In Japan, however, another ideology competes with this view. Gift-giving is deeply embedded in an economy of reciprocal exchange; thus the idea of giving objects of value to complete strangers with whom one has had no personal contact appears strange to many. This, too, is culture at work.

    The coalescence of these values, weighted very differently in Japan and North America, informs clinical practice, in one case enabling organ procurement and in the other inhibiting it. Despite the existence of constraining values, a lack of legal support, and the negative forces at work in the public domain, the majority of Japanese with firsthand experience of brain death, notably medical professionals working in intensive care units, think of this condition as human death. So do a number of relatives of brain-dead patients who ask for the ventilator to be turned off, although it often takes them several days to reach this decision.⁵ But even then, families may not be in favor of organ donation.

    Because the transplant enterprise is heavily dependent on organs procured from brain-dead bodies, it has been unable to establish a strong foothold in Japan. The thirty-year hiatus following the first Japanese heart transplant, an event with long-lasting, bitter repercussions, was finally ended in March 1999, one and a half years after the Organ Transplant Law was passed. A second heart transplant was carried out, together with a liver and kidney transplant making use of organs procured from a single brain-dead donor. In North America and much of Europe, by contrast, the dispute is about a so-called shortage of human organs and the unfulfilled needs of waiting patients.⁶

    Aside from the vast discrepancy in the numbers of transplants performed, the biggest difference between Japan and North America is public discussion of issues associated with the new death. Many people in Japan are acquainted with the minute details of brain death and have some inkling of the competing arguments; this dissemination of information has led, however, to an impasse. A good number of Japanese also possess media-filtered knowledge about organ transplantation and related issues in North America, Europe, and elsewhere. In North America, we may joke about being brain-dead, but many of us do not have much idea of what is implicated in the clinical situation and know little or nothing about the debate in Japan. The medical and legal professions and the media in North America have damped down almost all the public anxiety that was briefly evident in the early years of organ transplants. Recently, a few television programs have focused critically on the sale of organs, usually in India. In the late 1990s, the difficulties of determining brain death have been discussed occasionally in the media. But this coverage is a fraction of what Japanese citizens have been exposed to.

    My research strongly suggests that the majority of Japanese live and work with ontologies of death that differ from those of North Americans. This difference invites examination of the way in which contemporary society produces and sustains a discourse and practices that permit us to tinker with the end of life. Even when the technologies and scientific knowledge that enable these innovations are virtually the same, they produce different effects in different settings. Clearly, death is not a self-evident phenomenon. The margins between life and death are socially and culturally constructed, mobile, multiple, and open to dispute and reformulation.

    The culture of Japan does not fully account for the discrepancy between the two geographical locations on this issue, although this is commonly assumed to be so. This could be the case only if the North American situation were assumed to be normal, culture-free, and progressive, and that of Japan to be in effect culturally conservative. Such a dichotomous argument renders the concept of culture unproblematic—a position to which I take exception. In trying to explain why the brain-death problem persists as a hotly disputed matter in Japan, I argue that the culture of tradition is self-consciously put to work to aid those opposed to the recognition of brain death. It is not surprising that nostalgia for the good old days should be mobilized in arguments that warn about the moral implications of institutionalizing biomedical technologies that tinker with the margins between life and death. But in Japan this strategy draws on what are assumed to be shared values from the past and mobilizes them as a brake on innovations believed to have potentially damaging consequences for the uniqueness of Japanese society.

    Widely shared values are certainly implicated in the brain-death debate in Japan, although they are not always mobilized for political ends. These values are not passed down unchanged through the centuries, as traditionalists would have us believe; they are subject to reflection, dispute, and transformation. Knowledge about what takes place in the rest of the world, notably in North America and Europe, informs this debate. But culture and politics are also at work in the United States and in Canada. Death can never be entirely divorced from culture, and the brain-death discussion also has political dimensions in North America, even though most of the discussion has proceeded as though the redefining of death is simply a medical and legal matter.

    In undertaking this comparison I have chosen not to set out the North American situation and then that of Japan, but instead I move back and forth between the two geographical settings. This strategy is designed to underscore the point that the technology and expertise are equal in both locations and derive from a common recent history of medical innovation. Moreover, the juxtaposition illuminates how the debate in Japan is influenced by knowledge about the Other of North America and Europe. The various Japanese responses to brain death have evolved in part from an awareness of being a powerful nation in a globalized modernity, but being modern does not mean the erasure of what many believe is a distinct Japanese culture, nor does it entail an unexamined aping of the West. Concerns about creeping economic determinism and technological innovation coming at the cost of human well-being exist in Japan as elsewhere.

    My simultaneous inquiry into the Japanese and North American debates is also designed to create uncertainty. Why was brain death accepted with relative ease in North America and most of Europe? And what relationship does this easy recognition have to the increased commodification of body parts for many purposes beside organ transplants? Between chapters I have inserted vignettes or excerpts from newspapers and other publications involving brain death, organ transplantation, and other disquieting medical matters. I have added very few comments, in part because no straightforward answers exist to most of the disturbing questions these stories raise. The bad science, the errors, and the self-interest exposed in some of these cases in a sense are secondary matters. Doctors, like most other people, usually work and plan as carefully as possible, safeguarding what they think of as the best interests of those in their care; even so, no obvious, unequivocal answers emerge to the moral questions raised by this form of body commodification. It is inappropriate, even if it were possible, to suppress emotional responses to organ procurement in the interest of finding rational answers. We are scrutinizing extraordinary activities: death-defying technologies in which the creation of meaning out of sudden destruction produces new forms of human affiliation. These are profoundly emotional matters.

    My task is not to determine the morally correct path; I do not believe any hard-and-fast answer exists, and I find it difficult to take unequivocal stands about the various aspects of this complex situation, in which saving the life of one individual cannot in practice be disassociated from the death of another (although in closing I make my position clear on several key issues). Nor is my purpose simply to contextualize and account for the Japanese story. Through technological innovations we grow increasingly competent at the manipulation of the human body, alive and dead. This expertise demands a scrupulous consideration of the social consequences of what we are doing. One way to enter into this debate is to examine how societies other than our own have approached the social and moral issues associated with emerging biotechnologies, among them the creation of a new death for accident victims.

    1. Solid organ refers to the internal organs, including the heart, liver, kidney, and lungs, that have clearly defined anatomical boundaries.

    2. When polled, many Japanese claim, for example, that they are opposed to the recognition of brain death but that they are not in principle opposed to organ transplants. If, by organ transplants, respondents to these questionnaires have kidneys in mind, or possibly xenotransplants, then this position is tenable. It is possible that respondents do not recognize brain death as the end of human life and therefore do not want brain-dead patients used as organ donors, but that they are not in principle opposed to organ transplants. By far the majority of kidney transplants done in Japan, some liver transplants, and a very few lung transplants make use of living related donors. Otherwise, kidneys come from cadaver donors—that is, donors whose hearts have stopped beating, as opposed to brain-dead donors, whose hearts are still beating when the organ is procured. However, Japanese respondents who oppose organ procurement from brain-dead donors are taking the position, consciously or not, that no heart transplants and almost no liver or lung transplants can be permitted. It is also quite possible that respondents are thinking in personal rather than general terms: that they themselves would not want to donate organs, nor would they want family members to become donors, but they have no objection to organs being procured from other willing volunteers.

    In the 1990s, between 400 and 500 kidney transplants took place each year in Japan using living donors (in the United States, with approximately twice the population of Japan, 4,493 living related donations took place in 1999). Another 150 to 250 transplants each year in Japan made use of kidneys procured from bodies in which the heart had stopped beating (these official figures almost certainly include the few cases in which kidneys were procured from brain-dead bodies).

    As of August 2000, 46 Japanese patients were waiting for new hearts, 21 for lungs, 35 for livers, and 28 for pancreas transplants. Waiting lists for organs other than kidneys have existed for only three years, and this fact may account for these remarkably low numbers. The above figures make it clear that the United States is much more aggressive in the use of living donors than is Japan. This difference is largely explained by the lack of transplant surgery facilities in Japan, but it also suggests ambivalence toward the use of living donors.

    3. Alienable means legally available for transfer or sale. Current policies in North America and Europe treat the cadaver and body parts as quasi-property, thus making them alienable, but their transfer may not involve payment.

    4. I am using commodity here in its original sense, to mean something that has a use, advantage, or value and can therefore be exchanged. Monetary exchange is the norm but not the only medium of exchange.

    5. It is impossible to estimate how many families request that the ventilator be turned off, but of the nineteen emergency medicine doctors I talked to in Japan, all but one of them had experienced this situation more than once.

    6. Discussion of a shortage of organs is not entirely absent from Japan, but it takes second place to the discussion about the recognition of brain death.

    TRAUMA

    Discharge Summary

    Mr. Smith, 29-year-old male, was brought to the ER on 15 September at 00:33, having jumped in front of a metro train at McGill station. Ambulance notes state that witnesses reported that he was struck by the train. Patient was recovered from under the first carriage. At the scene, he was reported unresponsive but breathing spontaneously with a strong pulse; other events surrounding the accident remain unclear.

    Trauma team present on patient’s arrival. He had an oral airway and a cervical collar. On examination he had good bilateral air entry, with O2 saturation at 97%; trachea was midline and there was no chest wall crepitus. Heart sounds were normal with no murmur. He had a #18 left brachial intravenous line. He was noted to have an open skull fracture. Right pupil was blown, left pupil sluggish. Glasgow coma scale was 3.

    He was intubated at 00:42 with a #8 orotracheal tube, according to trauma protocol; paralyzed with 100 mg succinylcholine and administered 100 mg of lidocaine. Three more large-bore IVs were started. Cefazolin 2 g and a 200 mg bolus of Propafol were also administered. Blood pressure remained stable, running at 140/80 in the ER. Neurosurgery present in the ER.

    CAT scan of the head done in the ER showed multiple skull fractures with bilateral intraventricular bleeds, subarachnoid hemorrhage and hydrocephalus with a small left epidural hemorrhage. C-spine CAT scan showed a right lateral mass of C1 fracture, and a C4 pedical fracture. CAT scan of abdomen showed a left lung contusion. Pelvis was cleared by the radiology resident.

    Patient was transferred to SICU [surgical intensive care unit] at 01: 50, where he was hyperventilated; a mannitol drip was started. Neurosurgeons installed an ICP monitor which showed a pressure of <15 mm mercury. C3 transverse process fracture on CT also noted. 20 G right radial arterial line installed. Triple lumen left femoral line installed. Patient assessed by orthopedics. At 02:20 blood pressure began to drop and inotropes were started. At 03:00 temperature was 91°F (33°C), and he was noted to have right pupil at 6mm and left at 3mm and nonresponsive, with no corneals and no gag reflex. At 03:00 decision was made to warm patient to 94.5°F (35°C) and bring pCO2 up to 40 mm Hg. At 03:00 a decision was made to stop all sedation and do an apnea test, if toxicology screen negative. If no spontaneous respirations at pCO2 60 mm Hg, and no brainstem reflexes present, then diagnosis of brain death would be confirmed, and so advisable to discontinue treatment.¹ At 06:00 exam showed right pupil 7 mm fixed and nonreactive, left pupil 4mm fixed and nonreactive. Tox screen negative for acetaminophen, salicylates, tricyclics; ethanol was 28. Ventilated assist-control 8 tidal volume 800. Nil acute on chest X ray. Still on Levophed drip to maintain BP. Hemoglobin 89. Diagnosis likely brain-dead; plan to do apnea test, maintain BP with Levophed, alert transplant team; social services to ID patient.

    Social services saw patient, noted police report #47–99–134–98–093, contacted Constable Brown 330–9483.

    At 18:00 no change in neuro exam, failed apnea test, no eye movements in caloric test, doll’s eye test negative. Plan to repeat apnea test later. At 20:30 police came to claim patient’s keys. At 23:00 patient identified by police as John Smith, born 14 April 1969, address, 1234 South St., phone 555–1234. Social services traced and contacted parents who came to ID patient at 04:30 on 16 Sept.

    Seriousness of injuries explained to parents, but that patient not clinically dead at that time, but very close. Parents agreed that once apnea test was repeated and was positive they would consent to withdraw active treatment, including ventilator.² Parents informed that they would be approached about organ donation in the event that patient was confirmed brain-dead. Parents agreed to consider in that case. Québec Transplant notified of potential donor. Apnea test was repeated at 06:30 and was positive. PCO2 before 40, after 10 min pCO2 61. Parents present at declaration of brain death, met with transplant coordinator. Consented to donation. Transplant team notified.

    For every patient who is admitted to an emergency medicine or trauma unit and does not survive, a discharge summary must be written, usually by the nurse in charge of the case. This summary is based on a real incident, but all identifying features have been removed, and some of the details have been changed. Discharge summaries use many abbreviations and incomplete sentences. I have had to change the language to make this summary even minimally comprehensible, but I have deliberately retained much of the technical language in the document.

    1. The absence of a breathing reflex in the presence of a high concentration of carbon dioxide in the blood, which would normally trigger breathing, can indicate lack of function in the brain stem. This condition is established by using the apnea test, one of a set of clinical tests used to establish brain death.

    2. In this case, the medical staff and parents agreed that the situation was so bad that there was no need to do a second apnea test. All recognized that there was no possibility of survival.

    THE PROCUREMENT

    The pager on the bedside table goes off at 12:30 A.M. Jarred from a deep sleep, I stumble into the next room and dial the number displayed on the tiny screen. The transplant surgeon answers immediately from his car phone: I’m ten minutes from the hospital, we’ll be starting a procurement in about half an hour.

    I drag on some clothes, stuff tennis shoes and thick socks in a bag, and call a taxi. During the fifteen-minute journey to the hospital I feel apprehensive about being an intruder into the efficient, sterile space of the operating room, in particular because it will be to observe not a lifesaving procedure, but the harvesting of human organs.

    The cavernous hospital, overflowing with patients by day, is strangely quiet, the long corridors empty save for one man dozing fitfully across two upright chairs, perhaps waiting for news. The elevator takes me up to the surgical unit on the fifth floor, where I pass through double doors into a deserted reception area. Fortunately, this is not my first time as an observer in the OR, and I know where to find a set of greens into which I change. I pull on the thick socks and tennis shoes, essential for standing in one spot for three or four hours. Thus prepared, I go through a second set of double doors into a transition area, the busy assembly point for successive teams of surgeons during the day. Here I put on plastic hair and shoe covers before proceeding to room 12, the only one lit up and in use at this time of the night. I tie on a face mask before entering.

    The OR is a place of intense activity: three nurses prepare the instruments, swabs, drapes, and other accoutrements; a transplant coordinator is on the telephone; one orderly departs after delivering the patient, while another prepares containers for the organs; a senior surgeon stands at the foot of the operating table. He chats with his two residents, both women, until the nurses are ready to clothe all three of them in sterile gowns. Two anesthesiologists confer among the monitors clustered at the head of the table. No one gives more than a brief glance at the body, connected to numerous tubes and lines extending to a battery of monitors, the diaphragm rising and falling to the rhythm of the artificial ventilator.

    Preparations complete, the nurses turn to the patient and remove all the drapes, except for one covering the groin. They place the arms on supports at right angles to the body. The donor had recently painted her fingernails a bright red; now, in death, they appear incongruous. The nurses swab the entire torso with providone iodine to sterilize it before the surgeons make the long incision. The body is then draped again, leaving only the iodine-stained center of the torso exposed. The catheter, inserted to collect the urine that the donor’s kidneys will produce until the moment they are removed from the body, is carefully checked. Meanwhile, a waist-high barrier of drapes has been erected to separate the body of the donor, recumbent in the sterile area, from her head and neck, in the nonsterile domain of the anesthesiologists.

    Using a scalpel, the surgical team makes a single long cut from just below the sternum to just above the pubis. With a cautery, the team works its way through the layer of fat beneath the skin and the abdominal musculature; then they use their gloved hands to expose the liver, lying deep in the right upper quadrant of the abdomen, beneath the ribs. The disquieting smell of burning flesh fills my nostrils as the cautery cuts and seals off small blood vessels to minimize bleeding into the abdominal cavity. Nevertheless I feel relatively little discomfort as I peer, along with the surgeons and nurses, into the body. Fascination and curiosity overcome feelings of horror or repulsion.

    Her phone calls finished, the transplant coordinator can now relax a little. She has made all the necessary arrangements for delivery of the kidneys to other hospitals to which prospective recipients, already alerted by their pagers that the gift of life is on its way at last, will be admitted as quickly as possible. Preliminary tests have revealed that the heart is not in good condition, and so it will not be used.¹ The liver will be transplanted immediately into another patient, already undergoing preliminary sedation in another room of this hospital.

    The coordinator was formerly a nurse, and she tells me enthusiastically how much she likes her present work, despite the inconvenient hours. She says that the donor lying in front of us had gone that morning to her bank, where she had suddenly collapsed, never to regain consciousness. Rushed by ambulance to the nearest hospital while attendants pumped air manually into her lungs, she was then intubated: that is, tubes were inserted through her mouth into her trachea, to which a mechanical ventilator was then attached. The staff in the emergency room had struggled to stabilize the patient; warmed fluids were forced into her veins to maintain her blood pressure, but it was clear from the outset that something was terribly wrong. A CAT scan revealed that a massive hemorrhage had virtually destroyed her entire forebrain, indicating that nothing further could be done to save her life.

    The possibility that this patient could be an organ donor was now uppermost in the hospital staff’s minds. The various electrodes, tubes, catheters and lines monitoring and administering medication were kept in place in the body while two neurologists were summoned. As it was late morning, they were on hand in the hospital, and they came independently to an opinion that the patient met the criteria for brain death. A little later she was unhooked briefly from the ventilator, and the apnea test was applied to see whether spontaneous breathing would start, but after a few minutes, when there was no response, the ventilator was reconnected. The same neurological tests were repeated six hours later, as is commonly recommended when establishing brain death, and the diagnosis was confirmed. The death certificate was signed. By this time it was known that the patient had signed her donor card and that her next of kin supported donation.

    With

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