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Twice Dead: Organ Transplants and the Reinvention of Death

Margaret Lock
Copyright Date: 2002
Edition: 1
Pages: 441
https://www.jstor.org/stable/10.1525/j.ctt1pn7ph
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    Twice Dead
    Book Description:

    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 Deadexplores 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 Deadconfronts one of the most troubling questions of our era.

    eISBN: 978-0-520-92671-4
    Subjects: Anthropology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. List of Illustrations
    (pp. ix-x)
  4. Acknowledgments
    (pp. xi-xii)
  5. Preamble: Accidental Death
    (pp. 1-13)

    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 1996), 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.”...

  6. TRAUMA
    (pp. 14-16)

    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 O2saturation at 97%; trachea was midline and there...

  7. THE PROCUREMENT
    (pp. 17-22)

    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...

  8. THE GIFT
    (pp. 23-26)

    It is 6:00 A.M. The patient is waiting, first heavily sedated and then rendered fully unconscious, while two surgeons meticulously wash their hands and go into OR 14 to join the nurses, one of whom assists them in donning sterile gowns.

    The body is swabbed and draped, and then a large incision, an inverted V, is quickly made just below the rib cage. The disconcerting smell of burning flesh assails the nostrils for a while as the cauteries cut deep through the layers of skin and fat, stanching the blood flow with their heat as they cut. When I first...

  9. DEATH’S SHADOW
    (pp. 27-31)

    He looked pale and underweight for a thirty-seven-year-old as we sat facing each other in the privacy of a small room in the transplant unit.

    “For a long time I fooled myself that I wasn’t sick, but actually I’d really been noticing things.”

    “Like what”?

    “Lots of excess skin on my feet, putting on weight, big mood swings—just little things that you don’t pay much attention to.”

    “Excess skin on your feet?”

    “Yes, that’s common, I discovered, with cirrhosis, but of course, at the time, it never occurred to me that it was a sign that something was wrong...

  10. ONE Boundary Transgressions and Moral Uncertainty
    (pp. 32-53)

    In this book I show how brain death is associated with different sets of assumptions about what constitutes the end of human life in Japan and North America. I also highlight what conditions are thought by some to be as “good-as-dead” and ask if and when it is appropriate to make utilitarian use of body parts. Differing assumptions in the two regions yield different answers to these questions. They touch on boundaries between nature and culture, life and death, self and other, person and body. Medical science is undoubtedly one of the principal arbiters of these judgments, but it should...

  11. REANIMATION
    (pp. 54-56)

    Richard Selzer, the surgeon who retired early in order to write, died a few years ago but, fortunately for us all, rose again shortly thereafter. Rushed to an intensive care unit, Selzer, revived, narrates his own story. He wants neither his readers nor himself to be permitted the safety of distance from this experience:

    Let us look upon that cubicle of the emergency room: the stretcher upon which he lies is engulfed in nurses and doctors, each of whom is ministering to him at the same time. In a moment, his clothing is stripped from him. Because he is flailing...

  12. TWO Technology in Extremis
    (pp. 57-75)

    One vivid memory I retain from World War II is of an iron lung. This massive, frightening contraption was standing at the entrance to the hospital ward where I was taken by ambulance after the family house was destroyed by what turned out to be almost the last German missile of the war, fallen short of its London target. Tales about the iron lung and who had died encased in it circulated amongst us children as we traded our shrapnel collections, but I had never actually seen the fearsome thing until that day. Together with the nightly air raids, this...

  13. NARROW ESCAPES
    (pp. 76-77)

    According to a 1989 newspaper article distributed by the Canadian Press Associates, doctors in an Ottawa hospital had declared seventy-nine year-old Mr. Cybulski to be brain-dead ten weeks after an emergency operation on his heart. The patient was about to be taken off life support and receive the last rites from a priest when, in response to his two-year old grandson yelling at him from the door of his room, Mr. Cybulski sat up and stretched out his arms to the child. Mr. Cybulski was described as not only alive but exceedingly well one month after this incident. According to...

  14. THREE Locating the Moment of Death
    (pp. 78-100)

    At the end of the 1960s, when transplant surgeons first contemplated the systematic use of patients believed to be irreversibly unconscious as a source of human organs, a new legal definition of death was urgently needed to prevent physicians from being charged with murder. It was essential that the new death be a diagnosable event and that it be timed to allow the removal of organs while they remained “fresh” and reasonably well oxygenated. No longer based on the commonsense notion of the end of life—a failure of the heart and lungs—the new death is determined by the...

  15. JUMPING THE GUN
    (pp. 101-102)

    I was observing in the ICU of a tertiary care hospital in Montreal when news came that a middle-aged man, run over by a garbage truck, had been rushed into the trauma unit, where he was undergoing the usual assessment. The damage looked serious; he was unconscious, and his head had apparently suffered a major blow. It was possible that the man was brain-dead already.

    About an hour and a half later, this patient was wheeled into the ICU with his vital signs stabilized and a CAT scan completed. He remained unconscious. As the orderly maneuvered the patient into the...

  16. FOUR Making the New Death Uniform
    (pp. 103-126)

    Prior to 1968 physicians in North America and Europe had, as a matter of course, quietly turned off the ventilators of patients whose condition they firmly believed was irreversible and would soon result in conventional death. Intensive care units were in effect “a private domain, whatever the formal definition of death, and doctors exercised their discretion” (Rothman 1991:160). In performing such acts, physicians were participating in a long-standing but discreet medical tradition.¹ As the number of artificial ventilators accumulated in ICUs, intensivists had to deal increasingly with unconscious patients with severe head trauma whose condition was, in their estimation, irreversible....

  17. TRAGEDY
    (pp. 127-129)

    Claude Leduc was nine years old when he died.¹ He was run over by the next-door neighbor while playing in the driveway leading to his house and the neighbor’s garage. It was a Sunday afternoon, and his parents were home. They heard the squeal of the car brakes just outside the house and rushed out to find their son, the second of their three boys, lying on the ground with his leg twisted at an impossible angle. He was unconscious and not breathing spontaneously, but this did not trouble his frantic parents as much as the sight of his contorted...

  18. FIVE Japan and the Brain-Death “Problem”
    (pp. 130-146)

    In August 1968, the world’s thirtieth heart transplant was carried out in Sapporo, Japan. Dr.Wada Jiro¹ transplanted the heart of twenty-year-old Yamaguchi Yoshimasa, who had drowned the previous day, into the body of eighteen-year-old Miyazaki Nobuo, whose heart was swollen “due to various complications” (Asahi Shinbun1968a). Wada, a thoracic surgeon, was responsible both for declaring the donor dead and for the transplant surgery. As with previous heart transplants elsewhere, the event was heralded by the media as a medical triumph and the doctor lauded as a hero, but this adulation was short-lived.

    The name of the donor was not...

  19. AGGRESSIVE HARVESTING
    (pp. 147-148)

    In 1993, twenty-five years after the first two liver transplants using brain-dead donors were conducted, without success, in Japan, a third effort was made in Fukuoka city, in Kyūshū, at the university hospital. The liver had been procured from a patient who died in an emergency medicine center outside Osaka. The patient’s wishes about donation were not known, but once he was declared brain-dead the story was leaked to the media amid a flurry of speculation about procuring organs for transplant. It was later reported that the donor’s sister had been asked to consider organ donation. She telephoned her eighty-one-year...

  20. SIX Technology as Other: Japanese Modernity and Technology
    (pp. 149-164)

    Modernity is typically associated with progress, rationalization, and secularization. By these yardsticks Japan has been quintessentially modern for some time now, although several scholars claim that today the country is better characterized as an exemplar of postmodernity (Miyoshi and Harootunian 1989). Regardless of these appellations, it is clear that many influential people in Japan remain resolutely concerned about “tradition,” a past that is self-consciously identified with a specific history and culture, so much so that claims to Japanese uniqueness are by no means unheard of. Contemporary Japanese attitudes toward technology, science, and modern medicine are linked to a widespread ambivalence...

  21. BORN OF A BRAIN-DEAD MOTHER
    (pp. 165-166)

    The following case study was reported in theJournal of the American Medical Associationin August 1983:

    On Jan. 25, 1983, a previously healthy 27-year-old woman presented to her local hospital at 22 weeks’ gestation with a five-day history of worsening headaches followed by several hours of vomiting and disorientation. Results of physical examination were consistent with a 22-week gestation and were otherwise unremarkable; normal vital signs and no focal neurological deficits were noted. Results of a lumbar puncture were normal except for a slightly elevated opening pressure of 20 cm of water. . . . Four hours after presentation,...

  22. SEVEN Prevailing against Inertia: An Interim Resolution to the Brain-Death Debate
    (pp. 167-189)

    During the 1990s, the dispute over brain death in Japan came to a head; it reached a partial resolution when the Organ Transplant Law was passed in 1997. In an atmosphere of continuing confrontation, distrust, and public uncertainty, the Japanese government finally decided to exert some leadership in the brain-death debate, and in 1989 the Provisional Commission for the Study on Brain Death and Organ Transplantation (Rinji nōshi oyobi zōki ishoku chōsa kai) was formed. This committee was composed of fifteen members, including lawyers, a university president, the vice governor of Tokyo, a newspaper editor, several businessmen, an expert in...

  23. BECOMING A GOOD ANGEL
    (pp. 190-190)
  24. EIGHT Social Death and Situated Departures
    (pp. 191-207)

    The European and North American literature on medical death in the past hundred years reveals concerns that persist today.¹ Unanimous agreement exists that a diagnosis of death must be conservative. False negatives—treating someone as alive who is actually dead—cause no harm to an individual (provided that this time is not protracted, denying the individual death with dignity). They may result in social costs: resources may be wasted, for treatment and care continue, and a busy ICU in a financially strapped hospital is under constant pressure to free up beds. False positive errors, however, must be ruled out entirely....

  25. DISCONCERTING MOVEMENTS
    (pp. 208-208)

    From a letter to theJournal of the American Medical Association:

    This reader . . . was stunned by Dr. Liptak’s statement about the “disconcerting” aspects of disconnecting children from ventilators: “They shudder and gasp and twitch and inevitably lead you to believe that you have made a mistake and should not have disconnected them.” Disconcerting indeed! . . .

    Readers of theJournalshould understand clearly that patients who have been competently diagnosed to be brain dead neither shudder, nor gasp, nor twitch when ventilatory support is disconnected. The absence of such responses is, in fact, part of process...

  26. NINE Imagined Continuities: On Becoming an Ancestor
    (pp. 209-231)

    In this chapter I examine Japanese attitudes toward their ancestors, in particular toward their memorialization, and the possible effects of these customs on responses to the idea of a death located in the brain. Concern about the memorialization of the dead and the creation of appropriate links between the living and the dead have been of enormous significance throughout much of Japanese history, but it was with the formation of the modern state at the end of the nineteenth century, and again during the military regime in the early part of the twentieth century, that these practices first took on...

  27. MEMORY WORK
    (pp. 232-234)

    Martha’s parents had been separated for seven years when she died, aged ten, of a massive brain hemorrhage.¹ She had spent the evening with her father; the two of them had been out to a restaurant, and Martha had gone to bed around nine o’clock, as usual. Her father was awakened in the small hours by the sound of Martha vomiting in the bathroom. He helped her back to bed, but about half an hour later heard more sounds from her room. He thought at first that she was having a nightmare, but by the time he had got out...

  28. TEN When Bodies Outlive Persons
    (pp. 235-258)

    Over the past two decades, the diagnosis of whole-brain death has been standardized in intensive care units in many parts of the world. Yet few clinical practitioners ever refer to formal guidelines for determining brain death. Discussions with intensivists reveal that hospital committees either draw up their own criteria (presumably after consulting national guidelines) or, very commonly, intensivists are simply trained by other doctors, without referral to written guidelines. In some regions of North America, the local transplant organization puts out guidelines for determining brain death, and in hospitals where this diagnosis is infrequent, intensivists may refer to this booklet...

  29. PROCUREMENT ANXIETY
    (pp. 259-262)

    Excuse me if I’m a bit incoherent, I’ve been up for twenty-four hours straight. You know, by and large I don’t have any trouble with procurements. It’s never bothered me at all when it’s organ procurement from someone of my own age or my parents’ age. There are a lot of lawyers and other people out there with balding heads and gray hair and glasses, and so that means there’re plenty of donors I’ve done who look like me. And that doesn’t make me feel uncomfortable.

    But last night it was a kid, a strapping-looking guy, kind of long and...

  30. ELEVEN When Persons Linger in Bodies
    (pp. 263-287)

    In 1993, four years before the Organ Transplant Law was passed in Japan, Yanagida Kunio, a well-known cultural commentator, found his youngest son, Yojiro, lying on his bed with an electrical cord around his neck, having tried to commit suicide. Yanagida rushed his son to hospital. Within a short time the medical team swarming around the twenty-five-year-old patient had inserted tubes and lines into his body and attached three leads to his chest from the physiological monitor at the head of the bed in order that the functioning of his heart, blood pressure, pulmonary pressure, and central venous pressure could...

  31. TRANSCENDENCE THROUGH MUSIC
    (pp. 288-290)

    Four months after his birth, Kodama Yasutoshi was diagnosed with Werdnig-Hoffmann’s disease, an untreatable and progressive congenital disorder in which the spinal muscles atrophy. At four months he was put on a ventilator, and before he was a year and a half old he had a tracheostomy. At three years of age he had lost all voluntary movement in his fingers. It was not known how long Yasutoshi would live, even on life support, and his parents, who had been married for eight years before Yasutoshi was born, coped from day to day and then from year to year.

    Yasutoshi...

  32. TWELVE The Body Transcendent
    (pp. 291-309)

    Brain death, a concept that permits the commodification of body parts for transplant, is an invention of the West. I turn here to a consideration of the uses to which bodies have been put in Europe, for this is a singular history to which both Christianity and medieval medicine made major contributions. Biomedicine, with its anatomical foundation in which dissection of human organs is indispensable, is based on a long tradition of body commodification, a tradition that has been virtually absent in Japan.

    No argument can be made for simple historical continuities, but certain concepts and practices may have been...

  33. A COURT ORDER
    (pp. 310-314)

    K’aila was born in June 1989 near the Slave River in northern Alberta, in tranquil surroundings with neither telephones nor piped water. During most of his eleven-month life he was the unknowing center of a disturbing controversy. His mother, Lesley Paulette, a mid wife, has written about his story and recounted it in public. Her hope is that we may learn from it.

    K’aila, whose name means “willow tip” in the Chipewayan language, gave every sign of good health at his birth, although his mother noticed early on that he frequently showed spontaneous bruising. She wondered at the time if...

  34. THIRTEEN The Social Life of Human Organs
    (pp. 315-340)

    In his celebrated bookEssai sur le Don(The gift), Marcel Mauss argues that gifts, like commodities, must be understood as part of an economy of social exchange. In premodern society, Mauss 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 (1990). Mauss argued that individuals in effect give away a modicum of themselves with a gift, an animated “essence” that should, therefore, be returned in kind (1990:10).

    The idea of a gift economy has been all but lost in contemporary society; the...

  35. A RELIABLE MAN
    (pp. 341-344)

    I was born with a bladder infection and a problem that needed surgery. That’s twenty-five years ago now. They did the surgery when I was six months old, but the doctor was an alcoholic and he botched things up, and it caused permanent kidney damage. I had about six more surgeries to try to correct things, and my kidneys were fine for about thirteen years, and then they gradually started to give up.

    Just for a little while. I knew that I wanted to be a candidate for a transplant right away. They put me on the list but warned...

  36. AN UNSATISFACTORY INTELLIGENCE
    (pp. 345-346)

    The case of seventeen-year-old Terry Urquhart, which made front-page news in Canadian newspapers in 1995, encapsulates many of the contradictions rife in the transplant world. Terry, now deceased, had Down syndrome and impaired lungs and was given at most another five years of life. His parents applied to an Alberta hospital to have their son placed on the waiting list for a lung transplant, not in the expectation that it would “save” his life, but, in the words of a newspaper reporter, because “the medical miracle of a new lung means simply the chance to live out his last few...

  37. FOURTEEN Revisiting Vivisection in a World Short of Organs
    (pp. 347-362)

    In North America the public today is repeatedly told of a shortage of organs for transplant. Forums and symposiums are held and committees are convened to investigate why so few people donate their organs and how more could be procured. We read regularly about the agony of waiting and the sorrow of losing a loved one for want of a suitable organ (see, for example,Globe and Mail1999b). Many argue that unless we master the technology of cloning, there never will be enough organs to meet the demand. We need more and more because patients who formerly were considered...

  38. A DUBIOUS DEFINITION OF DEATH
    (pp. 363-364)

    From theOttawa Citizen:

    Doctors are removing organs for transplant from “brain dead” patients who are actually still alive, a parliamentary committee was told yesterday.

    The controversial testimony came from a small group of doctors—including one who once had a clinical near-death experience herself—and sparked a sometimes gruesome debate on the ethics of organ transplant medicine.

    The Commons health committee is holding public hearings to examine ways to improve Canada’s low rate of organ donation. So far, the committee has mostly heard from medical experts and patients who have told sad stories about how people have died while...

  39. Reflections
    (pp. 365-378)
  40. Bibliography
    (pp. 379-416)
  41. Index
    (pp. 417-429)
  42. Back Matter
    (pp. 430-430)