lock - inventing a new death

8/3/2019 Lock - Inventing a New Death

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Anthropology & Medicine, Vol. 9, No. 2, 2002

Inventing a new death and making it believable

(Accepted date: 1 April 2002)

MARGARET LOCK McGill University, Montreal, Canada

ABSTRACT This article shows how the concept of brain death was created in order that theroutinization of solid organ transplantation could take place. The concept permitted individualsdiagnosed as brain-dead but whose respiration and heartbeat continued through technological assistance to be counted as no longer alive, and therefore organs could be retrieved from themwithout legal reprisals. It is shown how, because the condition of brain-dead bodies isambiguous they are at once dead and alive discursive practices must be put to work in bothmedicine and law to justify their status as dead. Despite an apparent consensus within themedical world about the concept of brain death, disagreement remains among various countriesabout how best to make the diagnosis. Moreover, professionals working with brain-dead patientsdraw on a Cartesian split between mind and body in order to allow themselves to count such

patients as dead; this maneuver is justi ed because the minds of brain-dead patients no longer function, although their bodies clearly remain very much alive. Without the legal ction of braindeath the transplant world would be severely hampered.

Did Rene Descartes simply make an error when he created the disembodiedmind, as Antonio Damasio argues in his path-breaking book (1994)? Or did heconstruct a lie, or at least practice self-deception, in order that he might create

a science of the body, one that troubled neither God nor the Church of the daybecause it did not impinge on their realms? We will never have a satisfactoryanswer, of course, but, error or lie, the effects of Descartes thesis are still verymuch among us. It is not unreasonable to argue that, without the embedding of a disembodied mind in the discursive background of medical discourse that hasa bearing on mind/body problems, the concept of brain-death may well neverhave been invented.

Until the 18th century recognition of death was a social convention. Whetherthe end point of life is recognized as putrefaction of the body a body crawlingwith maggots, or the point at which a feather held in front of the nose stops

uttering, that condition must be agreed upon as equivalent to the moment of


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declared moment of death demarcates the transition from life to death, with allthat entails for the status of the involved individual. Once the management of death became, over 200 years ago, a medical rather than primarily a religiousmatter, efforts were made from the outset by the medical profession to measureand standardize death. The cessation of the heartbeat, determined with theassistance of the newly invented stethoscope, permitted doctors to declare deathas the moment when the heart and lungs cease to function. But, from the outset,a deception was in effect built into the diagnosis, because the body continues toexhibit a great deal of biological activity after the heart stops beating. Once thetechnology of cardio-pulmonary resuscitation became available the process of dying could be successfully reversed, exposing the deception, and demonstratingconclusively that selection of the moment of death along the continuum of dyingentails a moral decision.

Declaration of cardiopulmonary death is the convention by which the deathof most of us will be made social. What is informally recognized with thedeclaration of such a death is that, after efforts at resuscitation (if attempted) arediscontinued, all concerned agree that an irreversible process of dying has set inabout which nothing can be done. Today, however, for about 1% of all deathsin the so-called developed world, death is medically recognized as taking placein the rst instance in the brain and not in the cardio-respiratory system.

A complex conjunction of technologies and events must intersect in thecreation of such living cadavers, as they were rst named in the 1960s, and arenow more familiarly known (but perhaps less accurately) as brain-dead bodies.First, an accident must take place an automobile or plane crash; a drowning;a con agration causing smoke inhalation; a major blow to the head; or acerebral accident in which the brain suddenly oods with blood. Theseaccidents frequently result, some of them inevitably so, in major trauma to thebrain. Brain trauma is also caused by other accident-like events, among whichgunshot wounds to the head or suicide attempts are the most common. Moreoften than not victims of such severe trauma, because they can no longerbreathe for themselves, cannot survive without the aid of a relatively simplepiece of technology the arti cial ventilator.

Arti cial ventilators or respirators breathing machines as they were knownin the rst part of the 20th century, and then later as iron lungs weredeveloped on a large scale for the rst time to combat the polio epidemics of the1940s and 1950s. Over 400 different forms of positive pressure ventilators havebeen marketed in the ensuing years; these machines are part of the battery of indispensable technology without which intensive care units (ICUs) could notdo their work. A ventilator, together with the responsible ICU staff, becomes, in

effect, a simulacrum for much of the functioning of the lower brain-stem, andtakes over the involuntary task of breathing for patients who are no longer able


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(Ad Hoc Committee, 1968), so that with the assistance of the ventilator, theheart and lungs of such patients continue to function, but the brain is irre-versibly damaged.

These brain-dead patients remain betwixt and between, both alive and dead;breathing with technological assistance but irreversibly unconscious. Withoutthe arti cial ventilator such entities could not exist, and even with technologicalmanagement, their condition usually persists for only a few hours, days, orweeks, or very occasionally for months because, despite intensive care, the heartgives up, or the blood pressure cannot be sustained. Recently, however, withincreased knowledge and experience, survival rates have lengthened (Shewmon,1998; Shrader, 1986). One or two exceptional cases have been reported of overa years duration (Shewmon, 1998), but there are no documented cases of anyone recovering from this state, if it has been correctly diagnosed. Most

probably rather little attention would be paid to the condition of brain death,except for the fact that by far the majority of human organs used for transplan-tation are procured from brain-dead bodies. Living cadavers are, therefore, ascarce resource, valuable entities that are rigorously monitored and managed bythe international medical community.

In order for organs to be procured from technologically-assisted brain-deadpatients such individuals must be constituted among medical communities asno longer alive. This is the case today in North America, most Europeancountries, and in many other parts of the world. However, in Japan, despiteits sophistication and experience with biomedical technology, such patientscount as not-yet-dead. Until 1997 when the law was modi ed in Japan it has notbeen possible to procure organs legally from the brain-dead, and even now it canonly be done in highly restricted circumstances. In contrast to the situationin many other countries, the Japanese public, the legal profession, and eventhe majority of the medical profession in Japan, have not been convinced thata diagnosis of brain death, even though scienti cally accurate, implies thatbrain-dead patients are dead (see Lock, 2002, for a full development of thisargument).

Legalizing the brain-dead as corpse-like

After the rst heart transplant was carried out in South Africa by ChristiaanBarnard in late 1967, it was clear that the status of living cadavers urgentlyneeded to be clari ed, particularly so because more than one transplant surgeonwas shortly thereafter charged with murder for removal of a beating heart from

a patient. In one case, in Texas, a charge was dropped when it was decided bythe medical examiner that the donor had been murdered by an assailant when


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involved surgeons, charged with wrongful death, learned that they were to beacquitted. The brother of the donor who had brought the case against thefour doctors alleged that Bruce Tucker had not been dead at the time thathis heart and kidneys were removed for transplantation, and that it was theremoval of the organs that had caused his death. Tucker had been diagnosed asirreversibly unconscious, but as of 1968 no systematic criteria had been setout for con rming a diagnosis of brain death. In order to establish if Tuckercould breathe independently, he had been removed from the ventilator for veminutes, and, once it was agreed that he was not breathing on his own, hewas hastily reattached to the machine in order that oxygen would continueto circulate through his body and keep the organs in good condition fortransplant.

It had been assumed prior to the hearing that the prosecution was likely to

win the case due to some preliminary comments made by the judge, butapparently the judges mind was swayed by the statements of expert witnesses.One physician insisted that the body exists only to support the brain andthat the brain is the individual (Kennedy, 1973, p. 39). The donors brotherwas particularly upset because the hospital had apparently made little effort tolocate next of kin, and had treated Tuckers body as though it was unclaimed.After they were informed by the hospital administration and the police thatnext of kin could not be traced physicians had gone ahead with the procurementwithout permission and with no evidence that Tucker wished to be anorgan donor. Tuckers brother gave evidence in court that he had telephonedthe hospital three times, but he insisted that he had never been informed thathis brother was to become an organ donor, and that he had eventually learnt of this event from the undertaker. This case, together with the one or two otherslike it in the United States, spurred the medical and legal establishment intocreating standardized criteria to determine brain death. The Uniform Anatomi-cal Gift Act was already in place as of 1968, designed to ensure non-commercialand voluntary donation of corpses and body parts for transplantation, butwithout efforts to standardize the determination of brain death, loopholes stillremained. Across North America, the decision by the Virginia court permittedboth transplant surgeons and intensivists working in ICUs who make braindeath diagnoses to breathe easier.

In Japan, in 1969, a surgeon was also charged with murder, when he carriedout the worlds 30th heart transplant. The case was dropped without sentencingafter two years, but it was clear that the doctor had lied at the hearing, and thatthe donor probably was able to breathe independently when his heart wasremoved. The recipient too, it was eventually decided, was not so ill that he

needed a transplant. In Japan, over the years, numerous other charges have beenlaid against doctors who failed to obtain informed consent from relatives before


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Making sudden death useful

Standardized criteria for determining brain death were set in place in the UnitedStates in 1981, just before the Virginia court decision (Presidents Commission,1981). Many other countries were enacting laws and guidelines about the same

time, but the criteria vary in small but signi cant ways within some countriesand from one country to another (Pallis, 1987). A battery of clinical tests (whichalso vary within and among countries, and are in any case not always consist-ently applied) are used to con rm the diagnosis. However, when making clinicaldecisions in connection with brain-dead patients, the diagnosis provides littleinformation that will affect the therapeutic regime, for nothing can be done,given our current state of knowledge, to reverse the situation once the brain-stem is extensively damaged.

When an elderly or a very sick person on a ventilator starts to show signs of irreversible brain damage, very often no special effort is made to diagnose braindeath. There is no pressure to bring about a resolution to the situation. It is onlyfor that relatively small number of patients who may become organ donors thata precision diagnosis is called for. Once it is con rmed that a donor has beenlocated, then the assertive force of transplant technology comes into play, andattention is turned from the living cadaver to the condition of their organs (seealso Hogle, 1995, 1999). Potential organ donors cannot breathe independently,but unlike most other patients on ventilators, they are neither elderly nor

suffering from cancer or other invasive, degenerative, or infectious diseases.Almost all donors are basically healthy and very often they are young, althoughincreasingly middle aged donors are made use of; almost without exception,donors have been victims of accidents or traumatic violence. The conjunction of certain forms of accidents and violence with ventilator use and also withtransplant technology has produced an entity, the living cadaver, that prior tothe 1950s did not exist, and since the 1970s has come to be thought of increasingly not only as dead but in short supply.

The proclaimed shortage of organs has been described as a public healthcrisis (Randall, 2000). People whose work is associated with transplant technol-ogy are told repeatedly how many thousands of patients die each year waiting fororgans. In the United States, for example, roughly 30,000 potential recipientswere awaiting transplants in 1993 and, as Arnold et al . note, every day six of these patients die prior to receiving a heart or liver transplant. Those who needkidneys continue on dialysis (1995, p. 1). This shortage is exacerbated becausewe are better than we used to be at buckling up our seatbelts, and in any caseover the past 10 years the number of automobile accidents has been cut in half.

At the same time the success rate in obtaining agreement from patients andfamilies to donate organs has remained unchanged (Caplan, 1988).


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admonitory letters to units that do not provide the number of organs that couldbe expected to be procured, given how many victims of accidents are treated inthe unit. Required request of all families of brain-dead patients is in place inmany states in America. In some countries, including Spain, Belgium, France,Austria, Norway and Brazil, presumed consent is legalized, so that organs areautomatically taken from potential donors unless they have opted out ahead of time or else family members speak up in a timely fashion and rmly stop theproceedings. In theory protests by family members do not have to be heeded,but in practice it appears that they are.

From suspended animation to organ transplants

The work of Alexis Carrel, the 1913 Nobel Prize winner in medicine, together

with several other scientists, provided the necessary foundations so that trans-plant technology could mature over the course of this century. Carrel and hiscolleagues showed that not only could cells be kept in suspended animation, aswas well known by the turn of the century, but that they could be made tofunction and reproduce independently of the human body ( McClures , 1913).Once this was demonstrated, it was then a short step to the experimental era of organ transplantation, although this technology was not destined to mature untilthe late 1970s, when powerful immuno-suppressants that function to reduce therejection rate of transplanted organs came on the market

It was evident as early as the 1950s that patient/ventilator entities werecausing disquiet. For one thing, it was not clear what they should be called:living cadavers, ventilator brain, and heartlung preparations were just a fewof the terms bandied about. In a 1966 CIBA Foundation symposium, the focusof which was on organ transplants, certain impatience, characteristic of manyprofessionals associated with the transplant world in connection with these newentities, was clear:

[F]or how long should life be maintained in a person with irrevocabledamage of the brain? [W]hen does death occur in an unconsciouspatient dependent on arti cial aids to circulation and respiration? [A]rethere ever circumstances where death may be mercifully ad-vanced? [D]oes the law permit operations which mutilate thedonor for the advantage of another person? (Wolstenholme &OConner, 1966, pp. viiviii)

The thrust of questions such as the above becomes, in effect, a desire to know

when individual patients whose organs have potential value for others can becounted as dead enough to be transformed into commodi ed objects. At what


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literature, and so on. But before this situation could be taken for granted a newdeath had to be invented.

Inventing a new death

The rst attempt to de ne death based on the condition of the brain was madeby French neurophysiologists, who coined the term coma depasse (irreversiblecoma) in 1959 to describe this condition (Jouvet, 1959; Mollaret & Goulon,1959). With their usual aplomb, a group of Harvard doctors together with onelawyer, one theologian, and one historian when called together as a task force toexamine ethical problems in connection with the hopelessly unconsciouspatient made no reference to the work of the French physicians. The chair of this 1968 Ad Hoc Committee was anesthesiologist Henry Beecher, well known

for his concern of long standing about experimentation on human subjects.Together with his colleagues he invented the term irreversible coma whichwas used interchangeably with the concept of brain death for several years. Thecommittee gave two reasons for rede ning death: it stated that there wereincreased burdens on patients, families, and hospital resources caused byimprovements in resuscitative and support measures, and secondly, and moreominously, that obsolete criteria for the de nition of death can lead tocontroversy in obtaining organs for transplantation (Ad Hoc Committee, 1968,p. 337). Over the years it has been repeated many times that the real reason forcreating brain death was in order that organs could be procured legally.

With the publication of the Harvard Ad Hoc Committee report, twode nitions of death became widely recognized, the traditional cardiopul-monary death, and brain death. Throughout the 1970s, articles appeared inmedical journals in both North America and Europe arguing that the clinicaltests used to diagnose brain death were reliable and replicable (Black, 1978;Grenvik et al ., 1978; Mohanda & Chou, 1971). However, a 1978 two-partarticle in the New England Journal of Medicine pointed out that there was noof cial consensus in the United States about the best criteria for determining thediagnosis (in contrast to Argentina, Australia, Greece, and Finland, whereconsensus had been reached and relevant laws passed, and Canada, France,Great Britain, and Czechoslovakia, where criteria had been agreed upon andlegal changes were, in most cases, pending). This same article cites 30 differentsets of criteria laid out by various advisory groups to be used when making adiagnosis of brain death, including those outlined by the Harvard group, and bythe Royal College of Physicians and Surgeons of the United Kingdom. Theauthor, a neurologist, came to what appears to be a remarkable conclusion,

namely, that whole-brain damage from which survival has never been seen canbe diagnosed by many different sets of criteria, and that the criteria chosen may


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Determination of Death Act was proposed, after extensive debate among themembers of a special Presidents Commission, less than half of whom werephysicians. This Act was immediately supported by the American MedicalAssociation, and the American Bar Association, and subsequently adopted overthe years by the majority of state legislatures. In the same year, the Law ReformCommission of Canada published a document entitled Report on the Criteria for the Determination of Death , which provided the basis for amendments to federalstatutory law in connection with the recognition of death in Canada.

The Presidents Commission was mandated to study and recommend waysin which the traditional legal standards can be updated in order to provide clearand principled guidance for determining whether such [brain-dead] bodies arealive or dead (1981, p. 3). On the basis of this mandate, the Commission setout to write an unambiguous de nition of death to be enshrined, for the rst

time ever, in law (Annas, 1988, p. 621). As part of this process, the Commissionstated that it was necessary to rationalize and update what they characterized asobsolete diagnostic criteria present in the Harvard Ad Hoc Committee state-ment. The Commission worked against the position taken in writing by a goodnumber of individual physicians, philosophers, and theologians, who argued thatthe law should not have the nal word on death.

The Commission was explicit from the outset that their task of making adetermination of death was quite separate from the matter of allowing[someone] to die, although both arise from common roots in society (1981,p. 4). The report stressed that it was the death of a human being, not thedeath of cells tissues and organs, about which committee members wereconcerned. The Commission insisted that policy conclusions and the statuterecommendation must accurately re ect the social meaning of death and notconstitute a mere legal ction (1981, p. 31). Although it was recognized thatfunctional cessation of vital bodily systems can be used as standards to judgewhether biological death has occurred, the importance of such ndings, it wasasserted, is for what they reveal about the status of the human being, ratherthan about the various body systems.

Not surprisingly, it was recognized in the report that for the medical com-munity, a sound basis exists for declaring death even in the presence of mechanically assisted vital signs (p. 31). But the Commission wished to knowwhether the scienti c viewpoint was consistent with the concepts of beingdead or death as they are commonly understood in our society (p. 31). TheCommission concluded that:

The living differ from the dead in many ways. The dead do not think,

interact, autoregulate or maintain organic identity through time, forexample. Not all the living can always do all of these activities,


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In setting forth the standards recommended in this Report, theCommission has used whole brain terms to clarify the understandingof death that enjoys near universal acceptance in our society. (Presi-dents Commission, 1981, p. 36)

The public was not polled or called in to give testimony before the Commission,and to this day we have no more than spotty anecdotal evidence on which toground an assertion that brain death has near universal acceptance in theUnited States. However, given the confusion over the concept of brain deathmanifested by the media and the medical and legal professions in the years priorto the report of the Commission, it is highly unlikely that there could have beennear universal acceptance of brain death among the public. In the early 1980s,very few people had much of an idea, aside from confusing images obtained

from science ction and movies such as Coma , as to what the term brain deathsigni es, a situation that no doubt persists to this day.The Commission was at pains to establish a single set of standards which

would be accepted throughout the United States. The dif culties of transportingbodies across state lines for the purposes of treatment (meaning, it seems,organ procurement) without clear public policy in place was raised as a majorstumbling block. It was also emphasized that physicians must know as early aspossible along the continuum of dying when a mechanically supported patientsbrain ceases to function, in order that adequate care could be taken of organsdesignated for transplant.

As with the earlier Harvard Report, it is the interests of the organ transplantenterprise that determines the direction of these arguments. For example, it wasexplicitly stated that, even when the patient is on a respirator, internal organsundergo changes that make them less t for transplant unless they are carefullyperfused and certain medications are avoided. It is notable that these commentswere made at exactly the time when powerful new immuno-suppressant drugswere becoming widely available, and the numbers of organ transplants carriedout was rapidly on the increase throughout North America.

The Commission recommended that a concept of whole-brain death,equated with an irreversible loss of all brain function, be adopted. Determi-nation of whole-brain death has been the standard diagnostic practice in theUnited States. This decision was made in part because members of the religiousright who participated in the Presidents Commission argued forcibly that theycould only support the equation of a brain-death diagnosis with death if it wasthe case that brain-dead individuals were without doubt no longer in any wayalive. They argued for a black and white distinction between life and death and

insisted that the whole brain must be recognized as dead. In fact, as theneurologists who participated in the commission well knew at the time, it is not


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signi cance or prognostic value and will cease within days, but its existencemeans that in a strict sense of the term all activity of the brain has not entirelyand absolutely ceased. The term whole-brain death is therefore misleading forthose who insist that the point of death, when located in the brain, must bede ned as absolutely no activity in the brain of any sort. The British did not fallinto this epistemological conundrum because, as a result of a powerful casemade by the neurologist Christopher Pallis, the concept of brain-stem death andnot whole-brain death became recognized as the end of human life in thatcountry. Palliss argument was that, on the basis of neuro-anatomy, it isincontrovertible that if the brain-stem is irreversibly damaged and is no longerfunctioning then inevitably the upper brain must cease to function in duecourse usually within hours or days. Whatever residual activity is left in theupper brain after irreversible damage to the brain-stem is of no consequence.

In the intervening years some countries have followed the United States andothers, mostly in Europe, have followed the lead of the British. Yet others, likeCanada, started out recognizing whole-brain death, but in recent years theprofessional society has put out guidelines in which brain-stem death is now thestandard ( Canadian Journal of Neurological Sciences , 1999).

Capitalizing on ambiguity

For the remainder of this paper I will focus on one particular site wherebrain-dead bodies exist in a space entirely controlled by man and his technol-ogy (Agamben, 1998, p. 164), and by means of which parts of their bodies canbe put to utilitarian use. Observation of the management of the transition to abrain-dead body ready for commodi cation provides insight into ideas aboutwhat constitutes death, and how theories of person and identity are constructedand imbued with moral value. Death and dying can never be stripped of meaning and reduced to biology, and this is where ambiguity and, at times,deception creep into the proceedings.

The worth of brain-dead entities is constructed as part of the conceptualspace (Bates, unpublished manuscript) in which standardized ICU practices,wherever their location, take place. Conceptual space is in part produced bymedical knowledge and practices, which itself may be contested, but in additionthis space is profoundly in uenced by the discourse in connection with livingcadavers emanating from other relevant sites; notably the media, the law,religious bodies, and popular culture are deeply implicated in the creation,management, and disposal of this ambiguous entity in the ICU. What is more,not everyone working in the ICU feels the same way about disposal of brain-

dead bodies and their commodi cation so that organs can be procured. Butonce it is conventionally accepted that transplants making use of organs taken


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When bodies outlive persons

It is striking that despite legal recognition of whole-brain death and brain-stemdeath, respectively, and the publication of standardized guidelines for theirdetermination by the various involved medical colleges and societies, these

guidelines are rarely referred to in practice. The majority of the 32 intensivistsand eight nurses in ICUs whom I interviewed in the latter part of the 1990s inCanada and the United States have never read these guidelines. Usually inten-sivists are simply taught what to do at the bedside without referral to writtenguidelines. However, today, in contrast to the 1970s, there is a high degree of (but not complete) standardization across hospitals with respect to clinical tests(although this is not the case with con rmatory tests such as the EEG).

Everyone agrees that the clinical examination for brain death is straightfor-ward. The tests were described as robust, simple, and solid and, togetherwith the apnea test (a requirement to see if the patient can breathe indepen-dently of the ventilator), they inform the physician about the condition of thelower brain about the brain-stem. If there is no response to this battery of tests, then brain death can be provisionally diagnosed, because, as noted above,without brain-stem function the upper brain cannot survive. In practice, twospecialists should make the diagnosis independently, and usually the tests arerepeated after a suitable time interval (although this is not always the case today,even though guidelines inevitably recommend repeat tests). At this juncture, the

death certi cate is signed, and the ventilator is turned off unless the patient isto become an organ donor.

There is unanimous agreement among the intensivists interviewed that theclinical criteria for whole-brain death are infallible if the tests are performedcorrectly (even though whole-brain death cannot actually be diagnosed but mustbe inferred as having happened or else as imminent). There is also agreementthat whole-brain death, properly diagnosed, is an irreversible state, from whichno one in the experience of the informants has ever recovered, although ve of those interviewed have been involved with cases where errors have occurred.However, although the physicians I talked to agree that a brain death diagnosisis robust, it does not follow that they believe that the patients are dead whensent for organ retrieval.

Among these intensivists, not one believes that a diagnosis of brain deathsigni es the end of biological life, despite the presence of irreversible damageand knowledge that this condition will lead, usually sooner rather than later, tocomplete biological death. As one intensivist put it, Its not death, but it is anirreversible diagnosis, which I accept. There is implicit agreement that a

diagnosis of whole-brain death indicates that, despite massive technologicalintervention, the brain has ceased to function as a site for the integration of


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be kept alive and functioning as close to normal as is possible; as Youngner et al . note, maintaining organs for transplantation actually necessitates treatingdead patients in many respects as if they were alive (1985, p. 321).

Intensivists are aware that infants have been delivered from brain-deadbodies. It is not possible for them to disregard the fact that the brain-dead arewarm and usually retain a good color, that digestion, metabolism, and excretioncontinues, and some know that the hair and nails continue to grow. Many alsorealize that some brain cells may still be ring and that endocrine and othertypes of physiological activity continue for some time. For the majority,although a brain-dead patient is not biologically dead, the diagnosis indicatesthat the patient has entered into a second irreversible state, in that the personand/or spirit is no longer present in the body. The patient has, therefore,assumed a hybrid status that of a dead-person-in-a-living-body. However,

rather than dwell on ambiguities or engage in extended discussion aboutconceptual ideas about death, most clinical practitioners are, not surprisingly,interested rst and foremost in accuracy and certainty. In order to convey theircertainty that an irreversible biological condition has set in, in addition toexplaining about tests and examinations to families, they emphasize that theperson is no longer present, even though the appearance of the entity lying infront of them usually does not give visual support to this argument.

Intensivists stated (Lock, 2002) that they say things such as the following tofamilies at the bedside: the things that make her her are not there any more,or hes not going to recover. Death is inevitable. One doctor, who in commonwith many of his colleagues, chooses not to say simply that the patient is dead,because for him personally this is not the case, tells the family rmly that thepatient is brain-dead but that there is absolutely no doubt but that things willget worse. Another physician pointed out that it is dif cult to assess what isbest to say to the family, because in most cases one does not know if they havereligious beliefs of not:

I believe that a humanistic death happens at the same time as brain

death. If I didnt believe this, then I couldnt take care of these patientsand permit them to become organ donors. For me the child has goneto heaven or wherever, and Im dealing with an organism, respectfully,of course, but that childs soul, or whatever you want to call it, is nolonger there. I dont know, of course, whether the family believes insouls or not, although sometimes I can make a good guess. So I simplyhave to say that Johnny is no longer here.

One of the intensivists thinks of the brain-dead body as a vessel, and tells the

family that what is left of their relative is only an empty container, becausethe person has gone. For a doctor born in Latin America, the essence of the


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ceased to exist because their mind no longer functions, when discussing braindeath. Families, she insisted, often nd it dif cult to accept that there is.

It is essential that the doctor takes control a bit, argued one interviewee nochance of a reversal, and this is where the doctor cannot afford to appeardif dent or equivocating. One doctor stated that you cant go back to thefamily and say that their relative is brain-dead, youve got to say that they aredead you could be arrested for messing up on this. He recalled that during histraining he had described a patient as basically dead to his supervisor, whohad responded abruptly by insisting: Hes dead. Thats what you mean,basically. The task for intensivists then is to convince the family that, eventhough their relative appears to be sleeping, they are in fact no longer essentiallyalive; what remains is an organism or vessel that has suffered a mortal blow.

Doubts among the certainty

It is clear that these intensivists have few second thoughts about reversibility, butit is also evident that many of them nevertheless harbor some doubts about thecondition of a recently declared brain-dead patient, and it is often those with thelongest experience who exhibit the most misgivings. An intensivist with over 15years of experience said that he often lies in bed at night after sending abrain-dead body for organ procurement and asks himself, was that patientreally dead? It is irreversible I know that, and the clinical tests are infallible. Myrational mind is sure, but some nagging, irrational doubt seeps in. This doctortogether with the majority of other intensivists interviewed take some conso-lation from their belief that to remain in a severely vegetative state is muchworse than to be dead. If a mistake is made, and a patient is diagnosedprematurely, or treated as though brain-dead when this is not indeed the case,then it is assumed that either they would have become brain-dead shortlythereafter, or permanent unconsciousness would have been their lot. But doubtscontinue to fester away at some people.

One intensivist, who came to North America from India as an immigrantwhen a child, stated that for him a brain-dead body is an in-between thing. Itsneither a cadaver, nor a person, but then again, there is still somebodysprecious child in front of me. The child is legally brain-dead, has no awarenessor connection with the world around him, but hes still a child, deserving of respect. I know the child is dead and feels no pain, is no longer suffering, thatwhats left is essentially a shell. Ive done my tests, but theres still a child there.When asked by families, as he often is, if the patient has any consciousness, or

feels pain, this intensivist has no dif culty in reassuring them that their child isdead, and is no longer suffering. He noted that it is especially hard for relatives


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One doctor professed to a belief in a spirit or soul that takes leave of the bodyat death. For her, if brain damage is involved, this happens when the patientsbrain is irreversibly damaged, at the moment of trauma or shortly thereafter.Another intensivist insisted at rst, as did many of the individuals interviewed,that he had no dif culty with the idea of brain death: it seems prettystraightforward to me. Do the tests, allow a certain amount of time; a at EEGand youre dead. Then, 10 minutes later he said: I guess I equate the deathof a person with the death of the spirit because I dont really know aboutanything else, like a hereafter. Im not sure anyway, if a hereafter makes adifference or not. When asked what he meant by the word spirit, thisintensivist replied: I guess one would have to take it as meaning that part of aperson which is different, sort of not in the physical realm. Outside the physicalrealm. Its not just the brain, or the mind, but something more than that. I dont

really know. But anyway, a brain-dead patient, someones loved one, wont everbe the person they used to know. Sure their nails can grow and their hair cangrow, but thats not the essence.

A senior doctor, struggling to express his feelings, imbued the physical bodywith a will: the body wants to die, you can sense that when it becomes dif cultto keep the blood pressure stable and so on. This intensivist, although heaccepts that brain death is the end of meaningful life, revealed considerableirresolution in going on to talk about the procurement of organs: we dont wantthis patient to expire before we can harvest the organs, so its important to keepthem stable and alive, and thats why we keep up the same treatment after braindeath. Yet another interviewee acknowledged that real death happens whenthe heart stops: the patient dies two deaths.

For these physicians an organ donor is by de nition biologically alive, or atleast partially biologically alive, when sent to the operating room for organretrieval, because there can be no argument about the liveliness of the principalbody organs, aside from the brain. Perhaps most revealing of some confusionand occasional doubts in connection with the status of a brain-dead individualis that among the 32 doctors interviewed, only six had signed their donorcards or left other forms of advanced directives, and one other wasnt surewhether he had done so or not. When I pressed for reasons as to why peopleappeared hesitant, I was not given any very convincing reasons. Doctors saidthat their family would know what to do, or that they just didnt feel quite rightabout donation or, alternatively, that they supposed they should get it sortedout.

Nursing the brain-dead

Among the eight nurses I interviewed, all think of brain death as a reliable


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or behavior towards brain-dead patients until after the second con rmation of brain death. If the patient is to become an organ donor then, even after braindeath is con rmed, care of the living cadaver continues, but now it is in realitythe organs that are being cared for.

While carrying out their work between the two sets of tests, all of the nursescontinue to talk to their patients and, in addition to keeping their eyes on themonitors, pay their usual attention to the comfort and cleanliness of the body.Two nurses stated that they are acutely aware of the family at this time, anddeliberately make their behavior around the patient as normal as possible, fortheir sakes. More often than not it is the nurse to whom the family has beenputting their urgent questions, asking above all about the prognosis. In manycases nurses sense that a patient is brain-dead before the rst set of tests areactually done, for they have been checking the pupils of the eyes regularly,

looking for re exes and noting when there is no longer any response to painfulstimulation as when tubes are threaded into or taken out of the body.After the second set of tests con rm whole-brain death the majority of the

nurses now regard the patient in front of them as no longer fully human: abrain-dead body cant give you anything back; theres only an envelope of aperson left, the machine is doing all the work. When nurses continue to talk tobrain-dead bodies and care for the organs, it is out of habit, or just in casea soul is still there, or because the soul is probably still in the room (see alsoWolf, 1991; Youngner et al ., 1985).

In common with the physicians, the majority of nurses believe that it is whatgoes on in your head that makes you a person. One nurse insisted that the ideathat nails grow after brain death does not make her at all uncomfortable.Confusion is apparent, as was the case among some physicians, in the way inwhich nurses talk at times about the brain-dead: Once the patient has beendeclared brain-dead you still keep them on all of the monitors and the ventilator,for two reasons: rst of all, the family wants to go in and see the patient still alive , and second, soon after, a few minutes after, well be asking them toconsider organ donation (emphasis added). One nurse insisted that brain deathis not death, and that patients remain alive until the heart stops beating, whichtakes place in the operating room if organs are to be procured. Despite theseambiguities the ICU nurses with whom I talked are more conscientious than arethe physicians about signing their donor cards all but one senior nurse haddone so.

One medical specialty, that of anesthesiologists who are also intensivists,sometimes nd themselves in disturbing circumstances in connection with organprocurement. A woman who works in a childrens hospital put it this way:

Occasionally there is a patient who Ive been looking after over the


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112 M. Lock

a turn for the worse and become brain-dead in the day or so after Iwent off the ICU. For me, this is the most ghastly job that I have todo. (see also Youngner et al ., 1985)

This same doctor added:

Procurements are not a pretty sight. I always get the hell out of theoperating room as soon as I possibly can. As soon as theyve got theheart out. Everyone starts to scrabble at that point. Its ghastly,absolutely ghastly. I sort of have to sit down by the machines and justkeep checking the dials every couple of minutes so as I dont have towatch whats going on. Its ghoulish, but you just have to try and focuson the fact that those organs are going to do some good. In a way Ihave to think of them still as a patient because they are under my care,and I guess the most important thing is that they are treated withrespect, which isnt normally a problem at all. But with procurements,theres this con ict between the whole body and the organs. I cantreally let myself think of it as a person any more. On the other hand,certainly if Ive had contact with them before, and have been caring forthem, then its really hard for me to just accept that that process hasended. There really is a con ict. So I have to think of the body as avessel, partly because Im trying to protect myself. Its a really un-pleasant emotion, especially because often theres no external trauma,

so its really hard to realize that this young person is dead.In summary, none of these ICU specialists were opposed in principle to the ideaof organ transplants, and all of them believe that it is appropriate for individualsto donate organs, with prior consent. They are more ambivalent than many of them care to admit, however, about the status of a living cadaver. While theyagree that brain death is irreversible, they do not believe that brain-deadindividuals are dead. Nevertheless, because they are convinced that no sentientbeing, no person, continues to exist once brain death is declared, they nd

themselves able to send brain-dead individuals off for organ procurement. Asidefrom a few qualms at times, persons are clearly located in brains, that is, inminds.

In addition to occasional doubts about the ontological status of brain-deadorgan donors, the more mundane but terrifying anxieties created by the possibil-ity of error always lurk in the shadows. All intensivists had heard about caseswhere errors have been made, and some have been directly involved with them.In hospitals where I have done research I am convinced that these ambivalencesand anxieties are suf cient that, despite the pressures placed on ICUs by

transplant personnel, caution is the overriding stance.I make no claim that for these intensivists, being the direct heirs of Enlighten-


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positive recognition from the media and from professional, legal, and politicalquarters, few if any organs would be procured from brain-dead bodies, and fewintensivists would be willing to participate in their procurement. This enormousapparatus permits intensivists, except when a few stubborn doubts surface, toconvince themselves that individuals whose brains are irreversibly damaged andwho will expire in short order when taken off the ventilator have the worth of corpses. Knowledge, particularly from the Christian tradition, buttressed byEnlightenment philosophy, although rarely referred to explicitly, contributes towidely-shared tacit knowledge making it appear rational to think of brain-deadbodies as objects that can be commodi ed. This same tacit knowledge haspermitted a legitimizing discourse to gel at various key sites over the years.

In common with the public at large, intensivists participate in the rhetoric thatmeaning can be created for grieving relatives out of accidental, untimely deaths

if organs can be procured and live on in other needy patients. In NorthAmerican ICUs today one common story is that families recognize death tooquickly and are prepared to move to the organ donation phase when consider-able hope remains of patient recovery. Experienced ICU staff must then restrainboth inexperienced colleagues and families. The metaphor of the gift of life iseffective it seems in permitting people to restore a modicum of order to theirlives after chance has played havoc and temporarily taken control. The rationalmind does not account for the success of this rhetoric about saving the lives of strangers, or only partially so. For many involved families thoughts of transcen-dence are not far from the surface (Joralemon, 1995; Lock, 2002; Sharp, 1995).It seems that this rhetoric has successfully overcome any reservations grievingfamilies who choose to donate organs may have about the status of their relativeas living or dead.

Conclusions

The ambiguous status of the living cadaver makes it possible to arrive at morethan one conclusion about its condition as alive or dead. In North America, abrain-dead body is clearly biologically alive in the minds of the majority of thosewho work closely with it, but it is no longer a person. On the basis of theirwell-founded trust in medical tests, intensivists permit themselves to persuademany relatives of brain-dead patients that this condition can safely be countedas death a conclusion based on the condition of the brain. This is done in goodfaith because the patient is in a condition about which medicine can do nothing,one that will proceed inevitably to complete biological death. A brain-deadbody, having no mind, takes on cadaver-like status, retains only the respect

given to the dead, and can, therefore, be commodi ed. The stark reality of thistransition is veiled by a rhetoric about the saving of the lives of desperate


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114 M. Lock

religious bodies, and judiciously selected philosophers ensured, on the basis of carefully structured debate that took place as part of the Presidents Com-mission, that brain death was legally recognized and that the Catholic Churchwas not unduly disturbed by this situation. Details about this debate have neverbeen widely circulated among the public. When disputes arose at later datesthey were quickly displaced by a judicious use of the powerful metaphor of thegift of life associated with the transplant world, and attention was directed bymedicine and the media to the life-saving technology of organ transplants.

Even though procurement of organs from brain-dead bodies is today routine,complete consensus about the condition of brain death as the end of life hasnever been achieved, and the debate is currently opening up once again in partbecause, as a result of improved ICU technology, brain-dead patients cansometimes live for extended periods of time. Under these circumstances can

this condition be counted as death? Or is this diagnosis of death perhaps betterunderstood as a legalized ction a lie? And does not the technology simplyprolong a state that could best be described as good-as-dead? Perhaps Descarteswould have known how to deal with this intolerable ambiguity.

References

AD H OC C OMMITTEE OF THE H ARVARD M EDICAL SCHOOL TO E XAMINE THE D EFINITION OF D EATH .1968. A de nition of irreversible coma. Journal of the American Medical Association , 205 ,337340.

AGAMBEN , G. 1998. Homo Sacer: Sovereign Power and Bare Life . Stanford: Stanford UniversityPress.

ANNAS , G. J. 1988. Brain death and organ donation: you can have one without the other. HastingsCenter Report , 18 , 2830.

ARNOLD , R., Y OUNGNER , S., S HAPIRO , R. & M ASON SPICER , C. 1995. Introduction: back to thefuture: obtaining organs from non-heart beating cadaver donors. In A RNOLD , R., Y OUNGNER ,S., S HAPIRO , R. & M ASON SPICER , C. eds. Procuring Organs for Transplant: The Debate over Non-Heart-Beating Cadaver Donors . Baltimore: Johns Hopkins University Press.

BATES , D. W. Y. William Harvey and the construction of coherence. Unpublished manuscript.

BLACK , P. 1978. Brain death. New England Journal of Medicine , 229 , 338344.C ANADIAN J OURNAL OF N EUROLOGICAL S CIENCE . 1999. Guidelines for the diagnosis of brain death.

Canadian Journal of Neurological Science , 26 , 6466.C APLAN , A. L. 1988. Professional arrogance and public misunderstanding. Hastings Center Report ,

18 , 3437.D AMASIO , A. R. 1994. Descartes Error: Emotion, Reason, and the Human Brain . New York:

Putnam.G RENVICK , A., P OWNER , D. J., S NYDER , J. V., J ASTREMSKI , M. S., B ABCOCK , R. A. & L OUGHHEAD ,

M. G. 1978. Cessation of therapy in terminal illness and brain death. Critical Care Medicine ,6 , 284291.

H OGLE , L. 1995. Standardization across non-standard domains: the case of organ procurement.Science , Technology & Human Values , 20 , 482500.

H OGLE L 1999 Recovering the Nations Body: Cultural Memory Medicine and the Politics of


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central au cours de certains comas. Electroencephalography and Clinical Neurophysiology , 11 ,805.

K ENNEDY , I. 1973. The legal de nition of death. Medico-Legal Journal , 41 , 3641.L OCK , M. 2002. Twice Dead: Organ Transplants and the Reinvention of Death . Berkeley: University

of California Press. M C C LURE S M AGAZINE . 1913. On the trail of immortality. McClures Magazine , 40 , 304317.M OHANDAS , A. & C HOU , S. N. 1971. Brain death: a clinical and pathological study. Journal of

Neurosurgery , 35 , 211218.M OLLARET , P. & G OULON , M. 1959. Coma depasse et necroses nerveuses contrales massives.

Revue Neurologique , 101 , 116139. N EWSWEEK . 1967. When are you really dead? Newsweek , 18 December, 70, 87.P ALLIS , C. 1987. Brain stem death the evolution of a concept. Medico Legal Journal , 2 , 84104.P RESIDENT S C OMMISSION FOR THE STUDY OF E THICAL P ROBLEMS IN M EDICINE AND B IOMEDICAL

AND BEHAVIORAL R ESEARCH . 1981. De ning Death: Medical, Legal and Ethical Issues in theDetermination of Death . Washington, DC: US Government Printing Of ce.

R ANDALL , T. 2000. Too few human organs for transplantation, too many in need and the gapwidens. Journal of the American Medical Association , 265 (13), 12231227.

S HARP , L. 1995. Organ transplantation as a transformative experience: anthropological insightsinto the restructuring of the self. Medical Anthrolopology Quarterly , 9 , 357389.

S HEWMON , A. 1998. Chronic brain death: meta-analysis and conceptual consequences. Neurol-ogy, 51 , 15381545.

S HRADER , D. 1986. On dying more than one death. Hastings Center Report , 16 (1), 1217.W OLF , Z. R. 1991. Nurses experiences giving post-mortem care to patients who have donated

organs: a phenomenological study. Scholarly Inquiry for Nursing Practice: An International Journal , 5 , 7387.

W OLSTENHOLME , G.E.W. & O C ONNOR , M. 1966. Ethics in Medical Progress: With Special Reference

to Transplantation . Boston: Little, Brown.YOUNGNER , S. J. et al . 1985. Psychosocial and ethical implications of organ retrieval. New England

Journal of Medicine , 313 , 321324.


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lock - inventing a new death

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