Professional Documents
Culture Documents
-Elias Canetti, Auto Da F.4 For some time thoughtful men have been increasingly troubled by the present attitude in the medical profession: Youre dead when your doctor says you are.
-Desmond
ichard Selzer, the surgeon who took early retirement in order to write more of his cogitations on Life, died a few years ago but, fortunately for us all, rose again shortly thereafter. His EKG was flat for four and a half minutes, and no amount of resuscitation had any effect. The attending nurse wrote the time of death on the chart, and ten minutes later noted the characteristic settling of the
Medical Anthropology Quarterly 10(4):575600. Copyright Q 1996 American Anthropological AS= ciation.
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body, the fixity that is incontrovertible.Then, unexpectedly,the body shuddered: A moment later he draws his first breath. It is a deep sigh that might be interpreted as one either of sorrow or of satisfaction, as though one precious thing were being relinquished and another embraced. Soon, a tracing returns to the electrocardiogram, and the breathing becomes regular. The room, which had descended into a subaqueous silence emanating from the corpse, is now fiercely active. All the machinery is back in place, chugging, vibrating, clicking, ringing (Selzer 1993: 4445). Later, at the weekly conference, people question the judgment of death, but the nurses persisted with their claim that the cardiogram was flat, and that there was neither a pulse nor blood pressure. Selzers purpose is not to produce an objective account; he does not strive to tell us what really happened. If we are interested only in accuracy we could, perhaps, dismiss this narrative as somewhat fanciful. But surely that would be to avoid the lesson: that we should be left with considerable disquiet. How often are mistakes made? And if we can make mistakes with what is, after all, surely a familiar hospital event, how much more so with the recently arrived new deathwith brain death? Perhaps some of the accounts we read occasionally, even in respectablenewspapers, about people coming back to life, are not so bizarre after all. For example, it was stated in a 1989 article originating from the office of the Canadian Press Associates that doctors in an Ottawa hospital had declared 79-yearold M r .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, it was reported, sat up and stretched out his arms to the child. The patient w a s described as not only alive but exceedingly well one month after this incident. Apparently the doctors involved cannot account for this case; they c o n f m that the patients brain scans showed almost no activity, and their assumptionwas that he had suffered irreparablebrain damage. One doctor is reported to have said that with all our modem technology, it is still difficult to determine when or if a patient will come out of a deep coma (Montreal Gazette 19892). Deep coma and brain death are not the same diagnosis, and one is left wondering whether it was the newspaper, or the doctors, or both who were confused; but in any event this case, like that of Richard Selzer, is disquieting.
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are in turn different from subjective experience, and also from the discourse that we create to comment on our world. In theory, therefore, nature is conceptualized as a domain entirely independent from the moral order. In practice, however, nature continues to serve, as it did prior to the Enlightenment, as a moral touchstone, the effects of which are especially evident when we grapple with assigning the status of life or death to various entities. After the first artificial respirators were developed in the 1960s, making it possible to sustain brain-dead but otherwise alive human bodies for anything from a number of hours to, very occasionally, several weeks (and recently for much longer periods of time), it became an urgent priority to clarify the concept of death in technologically advanced nations. This situation was exacerbated by the simultaneous development of solid-organ transplantation technology in which hearts, livers, lungs, and kidneys could be harvested from the brain dead for use in other patients. However, this process of redefining death was not carried out as part of an international endeavor, although at first it was thought that this would be the case, but took place gradually on an ad hoc basis in one interested country after another, with remarkably different outcomes. In this article, using documents from recent history and contemporary materials from medical, philosophical, and media publications, I will attempt to show how arguments for the institutionalization and legitimization of brain death as the end of human life, followed by its routinization acrossNorth America and much of Europe, have repeatedly created discussion in which efforts are made to assign the concepts of life and death to scientificallydeducible and verifiable categories, and thus to make them indisputable beyond professional medical circles. Thus cases like those of Selzer and Cybulski raise concerns about accuracy and replication but do not usually induce questioning of an ontological kind. This situation will be compared with that of contemporary Japan where I have conducted ethnographic research on this subject for the past ten years (Lock 1996, in press; Lock and Honde 1990, Ohnuki-Tierney 1994). This comparative strategy highlights the ways in which the respective arguments are created out of different dominant sets of assumptions about the relationshipbetween nature and culture. In the case of Japan these assumptions make it difficult to readily construct arguments about death as reducible to questions of scientific accuracy. Although grounded in different ontologies, the disputes in both locations are fuelled by a perceived need to limit medical authority and professional interests; they reveal concerns about the urgency for society at large to share in, or even take charge of, the technological manipulation of human existence in contemporary society. In both North America and Japan society is, in theory, predominantly secular in orientation and assumed to be driven by principles of rational order and scientific endeavor, principles that are immediately evident in the structure and implementation of the respective health care systems. The existence of beliefs and values are, of course, acknowledged, but supposedly set aside in the daily round of medical decision making and practice. The dominant argument in North America in connection with technological intrusion into the process of dying has been that if a person can be declared dead using systematic, scientific criteria, a decision based in part on the grounds that the unconscious patient is in an irreversible condition, then it can be assumed that individual interest no longer
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exists, and such patients are simply owed the degree of respect that we would normally assign to a cadaver. In other words, organs may be dissected out of their bodies despite the fact that integrated biological activity of various kinds continues in such patients. In Japan, by contrast, debate about the harvesting of organs from brain-dead patients has opened up the floodgates of concern to the extent that brain death to this day is not legally accepted as death. This reaction reverberates with concerns to such a degree that efforts to assign death scientifically to a measurable point in time are often rejected outright. Death is understood primarily as a social event by the majority, among whom clinicians are included. Both the biological and the cognitive status of the patient is assigned secondary importance. Such a reaction, in which the status of a brain-dead patient is widely discussed among the public and in the media, has been largely absent until very recently in North America, with the exception only of a small circle of interested physicians, lawyers, and intellectuals. This contrast invites comparison of the way in which supposedly secular representations of nature and culture can result in more than one dominant discourse, leading on the one hand to an impasse that has brought the transplant industry to a halt, and on the other to a situation in which organ transplantation has been thoroughly routinized. Routinization has produced a new set of dilemmas, a so-called shortage of human organs, which in turn has caused renewed debate among involved professionals about the care of certain patients other than those diagnosed as brain dead, and whether their continued existence through technological intervention has any meaning for them as individuals. The thrust of the debate is that if their lives can be constructed as without meaning because of irreversible, severe cognitive impairment, even though they are alive by present standards,then organs may be harvested from them (Lock, in press).
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erupted in Japan over the past twenty-five years around this particular domain of technoscience. So here we are, back in anthropologysfavorite stamping ground of difference, seeking to understand why the compliantJapanese-as our stereotype has it-technologically sophisticated as they are, find themselves unable to recognize brain death as the end of life; why brain death and that other technology inextricably tied up with it, organ transplants, signals for them danger, loud and clear. This danger is perceived to be so potentially destructive that the result has been an exhaustive, as yet unresolved, public self-reflection in which discussion of the relationship of Japan to the West, tradition to modernity, and culture to technology all loom large. This self-reflectionreveals the ambivalence many Japanesehave in connection with technologies that radically intrude into what is taken as the natural order of society together with a concern about the mixing of what is understood as self and other. Yet other issues that arise include reaffirmation of the equality of all citizens, concerns about the integrity of the medical profession, and debate about the status of the body and its position in society, all of which radiate out from the centrifugal trigger of the brain-dead body. Of even more interest, I think, is to ask why we in North America apparently sense no danger emanatingfrom this deathly cyborg? Quite the contrary, why have we focused almost exclusively on the heroics of organ transplants and the gift of life while apparently deleting virtually all anxiety from our minds about the source of those organs? We have selectively lighted on the second part of the equation only, that other selfhonself hybrid that, it seems, is sufficiently seductive that we are blinded to its origins.
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damage, even when kept functioning artificially, nevertheless degenerates badly, usually in the space of a few days or weeks, and the ventilator is then unplugged (but see Shrader 1986). However, from 1968 on, when transplant surgeons started to make use of patients who had what they determined was irreversible brain damage as a source of human organs, the situation changed drastically. It became imperative for the first time to agree upon a diagnosis of death that could be clearly pinpointed in time, and as an event, rather than as an indeterminate process. Such a death had to be recognized as expediently as possible so that vital organs could be removed while in good condition.This diagnosis was based, moreover, on a lack of brain function rather than on the condition of the heart and lungs as had been the case since the 19thcentury. Prior to that time many experts claimed that putrefaction was the only reliable sign of death (Alexander 1980). When the necessity of remaking death was brought up for discussion, from the start it was a fear of repercussions from an anxious public who would refuse to cooperate with organ donation that was uppermost in the minds of many transplant surgeons (Paton 1971:163; Schmeck 1969; Shapiro 196950). Above all, it was agreed, the public had to understand that potential donors would be protected from an untimely death-from a snatchof their organs, as it was graphically described at the time (Reeves 1969406).
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in South Africa another heart transplant,described as an unequivocal failure, took place at Maimonedes Medical Center in Brooklyn involving an anencephalicdonor and a 19-month-old recipient. Despite these failures many others rapidly followed suit. Fifteen months later 118 heart transplants had been performed in 18 different countries, with a surgical mortality rate of 50 percent (that is, 50 percent of the patients died up to 30 days after surgery) and a cumulative six-month mortality rate of 88 percent (Cooper and Mitchell 1%9). Although Barnards first heart transplant was initially acclaimed triumphantly in the media, doubts and criticism followed hard on its heels. There was a call from some quarters for Barnard to be disbarred permanently from medical practice (Schmeck 1969). Furthermore, although considerable critical attention was given to possible mistreatment of organ recipients, equal concern was initially expressed about the fate of the donor. One American senator apparentlybelieved that all dying patients on ventilators were now vulnerable to having their lives peremptorily extinguished in order to retrieve their organs (Schmeck 1969672). The Nation published an article entitled The Heart Market, in which they asked rhetorically if someone was playing God and asserted that a shocking international heart transplant race was under way. This article also reminded its readers about the forgotten half of the transplant equation: the donor, and added, contrary to the general impression, few doctors can predict the so-called moment of death with certainty (Smith 1968:720). The article went on to point out that of a group of 120 head-injury patients at Cambridge University Hospital in England who were unconscious for more than a month, 63 survived. As the need for donors grows larger, the definition of death must be carefully redefined. When are you dead enough to be deprived of your heart? asked The Nation (Smith 1968:721). Time (1967) and Saturday Review (Lear 1968) were equally scathing, particularly of Christiaan Barnard himself, while Ebony cautioned, It is doubtful that the transplant of a Colored heart into a white man will have any positive effect upon the rigidly segregated life of South Africa (1968). In July 1968 Barnard arranged for an international meeting to be held in Cape Town of those surgeons who had carried out heart transplants to date in order that they might learn from one another. Most of the time was devoted to surgical and postoperative techniques, diagnosis of organ rejection, and pathological findings from dead recipients. The first part of the meeting, however, was given over to the selection and preparation of donors and recipients. Barnard made it clear that his prime interest was in the condition of the donors heart rather than in the condition of the donor as an individual, but he neverthelesscalled on our Neurosurgeon, D r . de Villiers, and asked him to describe when a patient can be thought of as a potential donor. De Villiers pointed out that any patient sufferingfrom an irrecoverable cerebral lesion and who cannot maintain respiratory and circulatory functions independently is legally dead. He also voiced concern about the need for redefining what is taken to be a cadaver in light of recent developments in transplant technology. A discussion then ensued in which it was emphasizedthat if the conventional point of death*-that is, cessation of the heart beat-was the earliest possible moment to declare death, then this made it impossible to carry out the proper preparation of a heart for transplant. However, it was also stated that for social
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and legal reasons the introduction of radically new concepts with respect to death should be avoided. With these thoughts in mind, the surgeon Rose-Innes proposed what he described as a deliberately conservative position. He pointed out that when an observation is made that a patient has died on the basis that the heart and lungs have ceased to function, this is simply a clinical test that is applied to a patient who may still be living. Death, in fact, occurs shall we say, 5-15 minutes later in relation to the central nervous system in a body at normal temperatures (Shapiro 196939). Thus, although the conventional point of death is declared with respect to the cessation of a heart beat and independent breathing by long experience, we are absolutely sure that the central nervous system will also cease to function a short time later. Rose-Innes supported the neurosurgeon de Villiers in his suggestion that one could conveniently declare death at an earlier point, namely when meaningful treatment of patients, including those with severe brain damage, comes to an end. Such a point is not the death point, but the point at which a clinical decision is made to stop treatment (Shapiro 196940). Rose-Innes went on to argue that the termination of treatment should be entirely a medical decision: I dont believe we can share this responsibility even with relatives. We may not ask consent of the relatives; it is entirely a technical medical decision,nor should we be circumscribed in this decision by legal authority (Shapiro 1969:40). Another participant in the discussion suggested that a group of physicians separate from the transplant team should make the decision to end treatment, but Bamard immediately countered that a transplant surgeon simply might want to call on the neurosurgeon to give [one] a hand (emphasis added). Kantrowitz, the American surgeon who had attempted to transplant a heart into a 19-month-old baby, reminded the group that it had been shown with canine experiments that there is a much greater success rate with transplants if a beating heart is used, and that if the heart has stopped and has then to be resuscitated, it does not perform as well. Kantrowitz went on to emphasize that the point when treatment is terminated should be the point when irreversible brain death has been established. Dr. Cooley, a transplant surgeon also from the United States, stepped in at this juncture to comment:
neuro-surgical colleagues at times have used terms which should be avoided. In the first place-I think that we should avoid the words alive and dead as synonymous with brain function or cardiac function. Alive and dead are such nebulous and vague terms, so ill-defined that they will never be defined, since no one understands either the meaning of life or death. One should say the heart is contracting, or beating, but not alive. . . .And I am sure that each of us is honest enough to admit that the heart was still contracting. . . when it was used in the donation or the actual operation. Brain destruction was irreversible in all instances. In my opinion the clinician can become too pre-occupied with the rights of the dead, namely the donor, at the expense of the recipient. We should not jeopardize the possible survival of the recipient while we are waiting around to made a decision whether the cadaver, as you call it, is dead or not. [Shapiro 1969:45]
Shortly after this speech, Dr. Cooley commented that donors are difficult to come by in our hospital and reiterated that the recipient must be uppermost in the doctors mind. The discussion then continued with a plea for the need to create a
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definition, to establish some boundaries about the point of no return so that public criticism about transplants could be averted. It was pointed out that in France and Great Britain guidelines were already in place, and the decision to declare termination of treatment had been taken out of the hands of transplant surgeons and placed in the domain of neurosurgeons. Bamard and Kantrowitz both took excep tion to such guidelines, stating that because the medical profession has always demonstrated that it could be relied upon, people around the world have confidence in physicians, obviating the need for formalized criteria. Bamard then declared, on the basis of the preceding discussion:
I think we can say we now have a donor, i.e. a potential donor. On the whole, people will agree that there is no need to wait for conventional death. Dr. Rose-Innes said that one should wait until that point, because only at that point can one say with certainty, after a certain period, that the patient will be dead-is that correct? But I can tell you that if you have a patient with or who can fulfill the criteria for becoming a potential donor, once you stop the respirator you can also be certain that the patient will die, so why wait until the heart stops beating when you are sure that the patient is going to die? [Shapiro 1969501
Rose-Innes retorted that the patient must be declared dead before the transplant surgeon could proceed, but Bamard remained unconcerned about precise details, provided one is sure the patient is going to die, whereupon another participant chimed in we dont even have a definition of death. At this juncture, Bamard emphatically declared that the group should pass on to more important matters because we are running rather short of time. With that, the death of the donor disappeared from view and was not raised again throughout the conference, only to remain as a very shadowy presence to this day in the transplant enterprise. In May 1968 an editorial appeared in the Journal of the American Medical Association in which the dilemma posed by vital organ transplants was clearly voiced, It is obvious that if. . .organs [such as the liver and heart] are taken long after death, their chance of survival in another person is minimized. On the other hand, if they are removed before death can be said to have occurred by the strictest criteria that one can employ, murder has been done. The editorial went on to state that it is therefore mandatory that the moment of death be defined as precisely as possible and concluded: When all is said and done, it seems ironic that the end point of existence, which ought to be as clear and sharp as in a chemical titration, should so defy the power of words to describe it and the power of men to say with certainty, It is here.
[JAMA 1968:220]
One month later, in August 1968, an ad hoc committee composed primarily of physicians called together by the Harvard Medical School, published the findings of their meetings in the Journal of the American Medical Association. The committee agreed that irreversiblecoma must be substituted for cessation of vital functions as the criterion for death. Two reasons were given as to why there was a need for this new definition: improvements in resuscitative and supportive measures had led to increased efforts to save those who are desperately injured, o that someone with irreversible brain sometimes with only partial success, s damage might continue to have a beating heart. The burden of such patients was
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great on families, hospitals, and those in need of beds, it was argued. A second reason given was that obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation(JAMA 1968:337).The report noted that the first problem for the committee was to determine the characteristics of a permanently nonfunctioningbrain, which were then described. It was emphasized that a decision to declare irreversible coma must be made only by the physician-in-charge, in consultation with one or more physicians directly involved with the case (implying that transplant surgeonsshould not be involved). The report continued that it is unsound and undesirable to force the family to make the decision. A legal commentary that followed this statement corroborated that judgment of death was solely a medical issue, and that the patient be declared dead before any effort is made to take him off a respirator; otherwise the physicians would be turning off the respirator on a person who is, under the present strict, technical application of law, still alive (JAMA 1968:362). The article also noted that Pope Pius XI1 had, in 1957, stated that it is not within the competence of the Church to determine death in cases where there is overwhelming brain damage, and that verification of death can be determined,if at all, only by a physician (1968:362). In what seems to be, in retrospect, a surprising oversight, the impression is given in this article that from now on all death will be determined by the condition of the brain. In 1969 Henry Beecher, the physician who had headed up the Harvard Committee, published a commentary in the New England Journul of Medicine in which he lamented the fact that lawyers had not been as enthusiastic as they might about accepting irreversible coma and had contributed to a tentativeness among hospital administrators about cooperating with the new death. Thus, although the legal profession was apparently content to leave the actual determination of death in the hands of the medical profession, it seems that certain lawyers nevertheless retained doubts about what was taking place. Beecher believed that more social and emotional maturity was called for in order to handle the question of brain death boldly, and that to fail to do so verges on the unethical ( 19691071).
A Japanese Murder
The first and only heart transplant to be conducted in Japan took place in Sapporo, Hokkaido, in 1968. As in other parts of the world, the Sapporo procedure initially produced an accolade from the Japanese media and was heralded as a dramatic medical triumph. However, several months later, the physician in charge, D r .Wada, was arrested for murder and only acquitted after six years of wrangling. The majority of Japanese believe in retrospect that the patient whose heart was removed was not brain dead, and that the recipient,who died two-and-a-half months after the operation, was not sufficiently in need of a new heart to have undergone the procedure in the first place (Goto 1992). As part of the current national debate about organ transplants, a debate that has ensued ceaselessly in Japan since the time of the Wada case, the chairman of the Japan Medical Association, testifying before a government committee in 1981, reported that twenty-three years earlier, right after the removal of the supposedly ineffective heart from the recipient, it had been tampered with, indicating that the involved doctors may have tried to exaggerate
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the degree of its deterioration (Muinichi Shinbun 1991). The case is now considered in retrospectas a barbarous piece of medical experimentationcarried out by a doctor who, significantly,had received a good portion of his training in America. Brain death is not recognized as the end of life in Japan to this day, and therefore very few Japanese have received vital organ transplants unless they have gone abroad to obtain them. The one exception to this is those children (more than 150) who have received what is known as a live liver transplantin which a section of liver is removed from a parent and transplanted into their dying child. Among the many arguments against accepting brain death as death has been an outpouring of literature in Japanese that questions whether lack of integrated brain function means that a person is dead. One journalist, very influential among the public, has emphasized that brain cells continue to function even when the brain as a whole has no integrated function as indicated by a flat elector-encephalogram (Tachibana 1991). Other writers are concerned that because brain death can only be established by the medical profession4nxause it is rnienai shi (death which represents a radical departure from a death where the family cannot be seen)-it participates fully in the recognition of the process. On the contrary, making integrated brain function the measure of death ensures that the family is pushed to the sidelines,rendered passive, and placed entirely at the mercy of medical decision making (Nakajima 1985). Numerous television programs, magazine articles, and books have repeatedly cast doubt as to whether death, at least death as it is in theory experienced in Japan, can be understood as a clearly diagnosableevent (Hirosawa 1992;Komatsu 1993;Uozumi 1992).It has also been argued in books and the media that irreversibility is hard to establish conclusively, and cases have been referred to (outside of Japan) where mistakes have evidently been made. The media further argues that brain death cannot be easily distinguishedfrom other conditions where the patient is unconscious, notably persistent vegetative state. At least one Japanese hospital where special nursing care is employed to assist in the recovery, sometimes substantial, of certain patients in persistent vegetative state has been filmed extensively by national television. This barrage of media attention, accompanied by an almost annual polling of the nation as to how it feels about brain death, the results of which are widely publicized and which reveal considerableambivalence,has ensured that discussion about hospital death has aroused a good deal of anxiety in Japan over the past 25 years. In the meantime Japanese transplant surgeons have argued vociferously for their point of view, but they have been unable, perhaps because of their exposure to a great deal more public scrutiny than transplant surgeons in other parts of the world, to advance their case (Lock 1996). A close reading of the Bamard transplant reveals that it was not entirely different from the Wada effort. The death of the South African donor was determined by the absence of reflexes, of spontaneous respiration and of electrical activity on the electrocardiogram for five minutes (Bamard 1968587, emphasis added)-hardly an adequate confirmation of death, even by the most lax of standards, and apparently resuscitationwas not attempted. The donorsnext-of-kin, his wife, did not give consent for the heart to be used because she was too distraught, and the donors mother was consulted in her place (Lear 196856). The transplant team took over from the donors physician to determine death and
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also approached the relatives of the donor directly. This state of affairs was duly recorded in Saturday Review where it was noted that, with the exception only of that magazine, the national newspapers and all other major American magazines, no doubt overwhelmed by the heroics of the surgery, had entirely failed to report on the worlds first heart transplant from the point of view of the donors family. Clearly, tampering with what had been conventionally accepted as death struck a much more sensitive cord in Japan than it did in North America, Europe, or South Africa. The Japan Bar Association continues to this day to be adamantly opposed to accepting brain death as the end of life, as are many doctors and citizen activists. Moreover, in the flood of literature on this topic in Japanese, in contrast to that produced in the West, the plight of potential recipients, until very recently, has been notably absent, while that of donors has taken center stage. Those Japanese who go abroad for transplantshave been described in the media as selfish (although this attitude is slowly changing as organ recipientsbecome more active politically), and some have received hate mail on their return home. Official Japanese guidelines, put out by the Ministry of Health and Welfare, exist for establishing a diagnosis of brain death. However, because no major organ transplants are performed (except for kidneys, for which a cadaver donor can be used-that is, a patient whose heart has stopped beating, or alternatively a living related donor), there is little pressure to diagnose a moment of death. The 18 Japanese intensive care specialists I have interviewed all agree that in their estimation the criteria for brain death must establish irreversibility,and therefore indicate either the approach of death or that death has already taken place. Moreover, they concur that brain death is distinct from other conditions where the brain is severely traumatized, includinga persistent vegetative state. However, these specialistswent on to state that they do not usually follow all the recommended guidelines for diagnosing brain death and instead rely in good part on clinical judgment rather than on technologically created evidence when reaching a diagnosis. Even when they themselves are convinced that the patient is dead, terms such as almost brain dead (hobo noshi no jotai) and damage to the consciousness (ishiki s&gai) are used when talking to relatives of patients. Over the space of several days, on being told repeatedly that there is no improvement, and that the situation looks hopeless, the family usually comes to accept that the patient is dead, and the respirator is then turned off. The possibility of organ transplants is rarely raised by either the family or medical staff, even in tertiary care centers in Tokyo and other large cities. In a few hospitals where transplant surgeons are particularly active, the question is brought up more often, and some families then agree to cooperate in donating kidneys and other body parts. The Japanese public knows very little about daily clinical practice in connection with the brain dead, except when they read the rather frequent newspaper accounts about possible malpractice on the part of physicians who at times remove organs from brain-dead patients without the informed consent of the involved family (Lock 1996). Doctors are often accused of obtaining agreement only in principle but without the family being fully aware of the circumstances. What the public has also been reminded of in the media is that tampering with dead bodies goes against Japanese tradition, that it is unnatural, and, moreover, that for the Japanese the center of the body has historically not been located in the brain, as it
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is suggested has been the case throughout the history of the West. Nor, it is asserted, has mind/body dualism been a dominant ideology in Japan (Lock 1996).
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undergo changes that make them less fit for transplants unless they are carefully perfused and certain medications avoided. With these points in mind, the commission recommended that a concept of whole-brain death, equated with an irreversible loss of all brain function, be adopted. This condition was carefully distinguished in the report from a persistent vegetative state, as exemplified by patients such as Karen Ann Quinlan and Nancy Beth Cruzan, whose brain stems continued to function despite an irreversible loss of higher brain function. The earlier definition of irreversible coma left room for doubt as to whether patients such as these could be taken for dead, and the concept of whole brain death sought specifically to clarify this point. Despite this effort to establish uniformity, a good number of publications appeared shortly after the act was passed in which medical professionals,philosophers, and social scientists pointed out the numerous ways in which the wording of the act remained ambiguous,particularly so because two criteria were recognized as acceptable in the determination of death: irreversiblecessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem. The philosopher Lamb, in summarizing this controversy,argued that ambiguity arose because the commission (as did the surgeons in South Africa more than a decade earlier),wished to avoid producing a statement that appeared to be a radical departure, a paradigm shift from what, until the invention of the artificial ventilator, everybody had informally recognized as death. It was assumed that most members of the public would be unlikely to cooperate with the transplant enterprise if they understood that death itself was being tinkered with, especially since brain death is not intuitively recognizable, even to a trained observer. A patient who is brain dead usually appears as though sleeping, the body is warm, skin color is normal, hair and nails continue to grow, babies have been delivered from brain dead pregnant women and respiration takes place, albeit with the aid of a ventilator (observationsthat are well versed in the media in Japan). Relatives must be willing to accept professional interpretations of readings produced by machines as indicators of death-something about which the Japanese public clearly feels considerable ambivalence. The commission, committed to vital organs transplants, was willing to take a risk that involved families would not resist. Thus they strove to make it legally possible to remove organs before their condition had deteriorated by creating criteria for a new death in which the nonfunctioning state of the brain would be of overriding importance. At the same time they emphasized, in contrast to the Harvard Report, that in most cases the former definition of death, based on cardiac and respiratory criteria, remained effective (Lamb 198523). As with the physician-dominated groups who had met earlier, one of the most difficult problems the commission faced was to transform the process of dying into an event that could be established scientifically, while at the same time striving to make it appear that nothing had been radically altered. Byrne and Nilges had noted just prior to the establishment of the commission that dying must never be confused with death, indicating that in their minds, at least, death is the endpoint of a recognizable process (1993:3). Their interest in the state of potential organs for transplant ensured that the commission sought to establish as early as possible
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along a continuum that death was indeed taking place-in other words, that an irreversible situation had set in. If it could be agreed that the brain was no longer functioning in an integrated fashion, and that this situation could only get worse, then it would naturally follow that the person no longer existed since all capacity for cognitive function would have ceased. Even though many of the cells of the body were still active, it was assumed that few people would argue against this concept of whole brain death, because the brain and therefore the person was clearly damaged beyond hope of recovery. Among the tests to establish a diagnosis of brain death, one had to be included to demonstrate conclusively that the patient had not regained the ability to breathe independently. Hence the apnea test, in which the patient is unhooked from the respirator for at least ten minutes, was included as a diagnostic tool in order to establish conclusively that without continued medical intervention conventional death would set in at once. Since, while undergoing the apnea test, the vital organs of the body are at risk for becoming deoxygenated, which would therefore make them less than perfect for transplantation, oxygen must be passively piped into the patients body through a tube inserted into the trachea for the duration of the test. Thus, at this stage of establishinga diagnosis, if the patient is a potential donor, the condition of the respective organs rather than of the person are uppermost in the minds of at least some, if not all, of the attending medical staff. Some involved medical personnel I have interviewedhave stated that the apnea test is very stressful. When asked for whom, the patient or the person doing the test, the answer has most usually been for both. Clearly there is some concern that the near brain-dead or brain-dead patient may remain sensitive to what is happening to them. Fifty-two physicians and one Ph.D., many of whom are well-known neurosurgeons and neurologists, wrote the Guidelinesfor the Determinationof Death, which appears at the end of the Commission Report. In addition to a description of the necessary diagnostic tests, warnings are sounded about reversible and complicating conditions that may make it appear as though a patient is brain dead when this is not in fact the case. Depending upon what caused the patients condition, and on what confirmatory tests are used, it is recommended that physicians wait for either 6.12, or 24 hours before finally confirmingbrain death, but the guidelines also state that duration of observation is a matter of clinical judgment and that some physicians suggest shorter or longer periods than those recommended in the report (1981:161). The report states that successful use of the guidelines requires a competent and judicious physician, experienced in clinical examinations. Consultations are recommended when appropriate.Given the urgency that transplant surgeons inevitably experience once they have been notified that a potential donor is available, it is evident that they should not be involved in making the diagnosis about death, a recommendation that everyone whom I have talked to in six major hospitals claims to follow today without exception. Despite this concerted effort to routinize whole brain death as a diagnosis, and to create uniformity in the determination of death, preliminary interviews I have conducted with physicians and nurses working in intensive care units make it clear that there is some variation in clinical practice. Indeed, the guidelines left room for such variation. There is also considerable concern among some specialists who
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have produced evidence to show that time pressure, working conditions, and human fallibility must inevitably lead to misdiagnosis at times (Byme and Nilges 1993). Moreover, doubt and debate continue to this day as to whether or not we are on an ethical slippery slope and as to what actually constitutes death (Arnold and Youngner 1993a; Veatch 1993). In some segments of the intellectual and medical worlds we clearly remain, in Kuhns terms, in a paradigm crisis, striving for commensurability but unable to achieve it. There has been only a partial rupture with the past, a situation exacerbated by the need to convey the idea to the public that in practice no change has taken place. Ironically, in contrast to Japan, the North American public is largely unaware that any professional dilemmas have been associated with the creation of brain death because this debate so rarely spills over into the media and popular press. Moreover, the majority of tertiary-care hospitals in North America have now routinized these procedures, and most of the public and involved medical professionals apparently have no difficulty with this state of affairs (but see Caplan 1988; Childress 1989; Sanner 1994; Youngner et al. 1989).The dominant position, made clear through interviews and at conferences, is that brain death is a robust diagnosis, one that is rather readily determined, making disconnection of the ventilator a relatively uncomplicated decision. At the end of March 1993 there were 30,000 potential recipients waiting for organs, and it was reported that on average six to seven of them died each day. The transplant world is suffering from what they describe as a chronic shortage of organs, and potential donors have actually decreased in recent years due to improved safety standards on the roads (Amold and Youngner 1993b). Ways to increase the donor pool are continually on the minds of transplant surgeons. Two more sources of organs have recently crept into usage in the United States and in parts of Europe: (1) from patients whose heart stops beating close enough to a hospital so that intravascularcatheters can be rapidly inserted to cool the organs in order to preserve their condition until permission for removal can be established; and ( 2 ) from patients who have requested removal of life support and are expected to die a very short time afterwards. Organs are removed from these latter patients with their prior approval. A recent issue of the Kennedy Institute of Ethics Journal devoted to what have come to be called Non-Heart-Beating Cadavers Donors (NHBCDs) suggests that it is time that we focus our attention on the treatment of donors.
59 1
while evading the central issue of just who had died. In order for there to be a uniform statutory definition of human death, there must be first of all, according to Zaner, a general consensus over what constitutes personhood or personal identity (19883. The commission acknowledged that no such consensus exists, pointed out that the issue has been debated for centuries, and explicitly sought to circumvent the problem by making a biological argument in which rationally conceived operational criteria and medical tests provided the answer, something with which not only the scientists but also the lawyers on the commission were apparently comfortable. Critics of the findings of the commission argue that neither operational criteria nor valid tests can be created unless an agreed upon working definition is first established-namely a concept of what it means to die (Bartlett and Youngner 1988). Such a definition has to be societal and not biological, the philosopher and psychiatrist team of Bartlett and Youngner argued, since it is the permanent loss of personhood that is of central concern, rather than the demise of the body physical (1988). Definitions of death grounded in the idea of a loss of personhood have been characterizedas ontological and contrasted with what are taken to be narrowly defined scientific definitionsbased on the state of brain function (Gervais 1987). Lamb, a philosopher, has expressed grave reservations about ontological definitions of death. He states that those who argue for yet another redefinition of death based on ontological criteria are in actuality appealing to the idea that a loss of higher brain function alone, and not the whole brain, is what ultimately counts. What has come to be known as neocortical death+onditions where there is an irreversible loss of consciousness and cognitive function, but an intact brain stem-is simply, according to Lamb, a rewording in scientific terms of a definition based on a loss of personhood. Lamb cites one of the papers in the Zaner collection where the author,a lawyer, argues that neocortical death has already been recognized legally, since life support has on occasion been removed from patients in a persistent vegetative state, that is, from patients who have undergone neocortical death. This author is explicit that medical recognition of neocortical death would be invaluable in the increased procurement of organs for transplants:
A newortical death standard could significantly increase availability and access to transplants because patients.. . declared dead under a neccortical definition could be biologically maintained for years as opposed to a few hours or days, as in the case of whole brain death. Under the present Uniform Anatomical Gift Act, this raises the possibility that neocortically dead bodies or parts could be donated and maintained for long-term research, as organ banks, or for other purposes such as drug testing or manufacturing biological compounds. [Smith 1988: 1291
Lamb points out that arguments such as Smiths are concerned only with criteria that assist in describingthe minimum necessary qualities for personhood, defined in terms of psychological abilities. Gervais has in turn criticized Lamb for placing too much reliance on a biological definition; Lamb, she states, sees death as a fact awaiting discovery (Gervais 1987:155), and characterizes the ontological approach, in contrast, as based in ethical reflection. Lamb has countered this rebuttal by claiming that whole brain death is an ethically superior formulation to neocortical death because in
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matters of life and death, objective testable criteria concerning presence or absence of vital functions, are more reliable than indeterminant assessmentsconcerning the quality of residual life, or speculationsregarding personhood, or utilitarian requirements for transplant organs (Lamb 1985). Lamb is clearly concerned that overriding interests about the supposed crisis precipitated by an organ shortagewill seize the day and send us on our way down the slippery slope to redefining death in response to an identified need. Thus he is adamantly opposed to Green and Wikler (1981), for example, who argue for the importance of a psychological continuity equated with higher brain function as necessary for the preservation of personal identity and hence life. For psychological advocates such as these authors Lamb states, personal identity appears to be the measure of human life (199O:G). He adds that the whole brain death formulation does not dispute that all capacity for integrated mental activity is lost, but he believes that the essence of personal identity is an elusive concept that in any case resides in a different logical space than the cessation of vital functions, and is certainly not one on which doctors should rely in making decisions about death. Personal identity, after all, does not have any specific anatomicallocation, claims Lamb, but is a quality akin to spirit, will, or soul, with religious, legal, and political associations. Lamb has gone on to develop a cogent argument to counter those who distinguish between having a life in the biological sense (considered relatively unimportant), and being alive, in the social and moral sense (Rachels 1986). He believes that this type of argument too is misguided and suffers, in common with similar arguments about loss of personhood, from a Cartesian dualistic bias in that the ethical cut-off point is assumed to be when the ghost leaves the machine. Lamb and others who think like him are adamant that definitionsbased on concepts such as a loss of personhood or moral sense are cultural products, subject to a wide range of interpretation,and open to easy manipulation and abuse where pragmatism and utilitarianism holds sway. As early as the 1970s Hans Jonas detected the classical soul-body dualism of Enlightenment philosophy at work in recent reformulations of death in the West.
[In] its new apparition. . .the dualism of the brain and body. . .holds that the true human person rests in (or is represented by) the brain, of which the rest of the body is a mere subservient tool. Thus when the brain dies, it is as when the soul departed: what is left are mortal remains. Now nobody will deny that the cerebral aspect is decisive for the human quality of life of the organism. . . .The position I advance acknowledgesjust this. . .[but] the extracerebral body [has] its share of the identity of the person. The body is uniquely the body of this brain and no other, as the brain is uniquely the brain of this body and no other. What is under the brains central control, the bodily total, is as individual, as much myself, as singular to my identity (fingerprints!), as noninterchangeable, as the controlling (and reciprocally controlled) brain itself. My identity is the identity of the whole organism,even if the higher functions of personhood are seated in the brain. [Jonas 1974:1391
Lamb, in agreement with Jonas, asks, If patients in a persistent vegetative state are to be considered dead, then how much neocortical damage would be necessary for a patient to be labeled as vegetative? (199053). He points out that there is no clinical homogeneity in vegetative patients since there are no firm criteria for defining just what such a state is. Diagnosis can be difficult (Beresford
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1978), and is particularly so in children; absence of consciousnessand self-awareness is not at all easy to define or establish, cases of significant recovery from this condition have been reported in reputable journals (Dougherty et al. 1981:997; Rosenberg et al. 1977:167-8), and several clinicsexist that specialize in the care of patients in persistent vegetative state, many of whom make remarkable recoveries. Given this climate Lamb, together with other supportersof whole brain death, believe it is imperative to search out precise measurement of neurological functioning. They are driven to this position because they are both suspicious of a narrow Euro-American, psychologically driven interpretation of life and, at the same time, see less of an opening for abuse of a tightly defined biologically based definition (provided in practice there is an under diagnosisof death whenever doubt exists).Fost has reached a more radical conclusion: that the problem with utilitarian justifications for redefining death, including the Uniform Determinationof Death, is that they invite constant redefinition whenever utility requires it, creating not only instability, but the perception and possibility that unwanted persons can be defined out of existence [whenever]it serves the greater good (1988:7).
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creating insurmountable social problems for the rest of society (1993:22). Veatch then argues that individuals would not be able to pick a definition of death that required society to treat them as dead even though they retained cardiac, respiratory, mental and neurological integrated functions. Likewise, I assume that people would not be permitted to pick a definition that would insist that they be treated as alive when all these functions were absent (1993:22). In practice, Veatch concludes, one can choose among heart-, whole-brain, and higher-brain oriented definitions, and he would like to see a definition of irreversible cessation of the capacity for consciousness written into law as a third option for death. However, Veatch himself believes that a whole-brain orientation to death is old fashioned and is becoming less and less plausible: To me, the principle is that for human life to be present-that is, for the human to be treated as a member in full standing of the human moral community-there must be integrated functioning of mind and body. That means some version of a higher-brain-oriented formulation (1993:24). As is well known, souVmind-the formulation usually attributed to Descartes, later reconceptualized as mind-was constituted in 18th century Europe as the repository of pure, untrammeled rational thought and set apart from the sinful Christian body. That contemporary Western moral philosophy remains influenced by this formulation seems evident in the examples cited above. The arguments of Englehardt and Veatch are, I believe, extreme. I do not think that most people would comfortablycount patients who breathe independently but are unconscious as dead. Nevertheless, I imagine that the majority of people born and raised in North America would probably find it hard to understand the person as being located somewhere else than the brain. The Japanese have not been overly concerned with the Cartesian dichotomy, nor has the concept of unique, clearly bounded individuals in whom rights are unequivocally invested been integral to their recent heritage, although both these topics are extensively debated in Japan today. Among the 50 Japanese I have asked, only one-third clearly locate the center of their bodies in the brain; the others, of varying ages, selected kokoro as the center, a very old metaphorical concept that represents a region in the thorax where true feelings are located. The idea of individual rights is currently gaining a serious foothold in Japan but has to battle against the powerful flow of a tradition in which an individual is conceptualized as residing at the center of a network of obligations, so that personhood is constructed out-of-mind, beyond body, in the space of ongoing human relationships. Person in Japan remains for, perhaps the majority. a dialogical creation, and what one does with and what is done to ones body are by no means limited to individual wishes (although contemporary Japanese literature disputes this position). Moreover, individual self-determination is thought by many as essentially selfish. The Japanese have also, perhaps in part as a result of their Buddhist heritage, long invested in the importance of nonverbal communication. Establishing rapport with another individual, especially a close relative, in which a oneness is achieved, often through touching rather than language, is highly valued. There is, moreover, plenty of evidence that recently deceased relatives continue to play an important role for many people in daily life in Japan, a cultural attribute that has a powerful influenceon behavior around the dying and dead (Lock 1996).
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Japanese citizens are as steeped in modern neurophysiology as are North Americans, yet, not surprisingly given the particularities of their past, they have chosen to focus their concerns on the donor-on those who are brain dead-rather than on the heroics associated with the gift of life. Ironically, activist groups opposing any changes in the definition of death often demand that the rights of the brain dead be recognized. It will come as no surprise that when both Englehardt and Veatch spoke at a bioethics conference in Tokyo recently, their talks confirmed what I believe a number of Japanese anticipated: that America is a land of extremes where people have forgotten how to care about one another.
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I suspect that the brain dead body has failed to signal dangerouspossibilities to most North American commentators because, despite its machinehuman coupling, it does not transgress boundaries that cause much concern. There were early warnings in a few media reports, and minority positions continue to exist in which doubts about the criteria for measuring death and about the accuracy of their application in practice are expressed. The possibility of achieving satisfactory informed consent with families has also been questioned ceaselessly. Nevertheless, relegation of the brain dead to a condition beyond meaningful human life has moved relentlessly forward, and we are now on the verge of steamrolling other cognitively impaired persons into oblivion. It would appear that, whether it is the heart or brain that stops functioning, we have not had to reconfigure our dominant positioning about death as a biological event through use of the ventilator; this piece of technology has simply permitted us to manipulate what will signify as the pertinent physical criteria to meet the utilitarian interests of the transplant world. Culture has intruded into nature yet again in the guise of science; a little tinkering has taken place, but, in contrast to Japan, no radical threat is posed to boundary formulations. However, since we consistently deflect debate around death and transform it into the vocabulary of saving lives, it may be that further investigation will reveal a good deal more ambivalence about the new death than is at present apparent. There is no doubt in my mind that much suffering is relieved through the transplant enterprise, and many thousands of sick Japanese and their families are bitter that they cannot benefit from this technology. On the other hand, well-documented excesses in the transplant world have been the source of much suffering. As technoscience continues its dramatic incursions into what has until now been beyond the pale, we would do well to insist that anthropological investigationsinto the flexible domain of nature and its availability as moral arbitrator through its cultural construction as science be taken seriously by those who actually tinker at these margins and those whose task it is to pontificate on the outcomes of such tinkering.
NOTES
Acknowledgments. This research was funded by the Social Sciences and Humanities Research Council of Canada, grant number 410-93-0544. Correspondence may be addressed to the author at McGill University, Department of Social Studies of Medicine, 3655 Jhmmond St., Montreal, Quebec, Canada H3G 1Y6.
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