Brain, Vol. 123, No. 2, 408-411,
February 2000
© 2000 Oxford University Press
Book reviews |
THE DEFINITION OF DEATH: CONTEMPORARY CONTROVERSIES.
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Glasgow, UK
This book about brain death is as much to do with legal and philosophical considerations, public attitudes and public policy as with clinical aspects. It arose out of a conference in 1995, but is much more scholarly and coherent than a conference proceedings—with authors referring to each others' chapters and the Editors writing an introductory commentary to each group of chapters. Each chapter has its own reference list and all are well written, making the book as a whole a rewarding read. Its focus is on the US, but there are chapters on specific public policy problems in Denmark, Germany and Japan.
The Editors' introduction to the whole book raises the possibility that the public consensus following the report of the President's Commission might be about to deconstruct. The threat is from debates about whole brain, higher brain and brainstem definitions, and when death occurs, although they acknowledge that there has been little public interest in these academic controversies.
Reviewing the cultural context of the evolution of brain death, an historian details reactions to the 1968 Harvard criteria. A major aim was claimed to be the avoidance of prolonged futile life-support and promoting death with dignity, rather than to aid the harvesting of organs. But the media focused only on the transplant issue and there followed no fewer than 11 feature films on the theme of murders to provide donor organs. Initially, the AMA did not want doctors to be ruled by guidelines, and lawyers did not think doctors should decide on their own. However, the President's Commission in 1981 largely resolved these issues. Laws were passed recognizing brain death, but leaving doctors to devise and apply criteria. The concept was `sold' to the public on the basis of whole brain death, the President's Commission rejecting the alternative higher brain definition (declaring death once consciousness is permanently lost).
Those of us who were involved in the development of the UK Colleges' criteria in 1976 and in the furore over the BBC Panorama programme `Transplants—are the donors really dead?' in 1980 will find Plum's review of diagnostic criteria of particular interest. That TV programme in 1980 amounted to a challenge to the purely clinical criteria established in the UK, as contrasted with the use in many other places of confirmatory investigations, in particular the EEG. Plum points out that with increasing confidence in clinical guidelines many institutional codes in the US no longer require laboratory confirmation. According to the American Academic of Neurology in 1995 and the recent New York State guidelines detailed by Plum, EEG is not mandatory provided the clinical tests have been repeated with an interval of 6 hours. Indeed Plum tabulates six papers reporting EEG activity after brain death had been clinically evident, stating that none of these patients made any recovery, even to the vegetative state. He reviews alternative confirmatory tests, in particular stressing their unreliability. He notes that nonetheless some US hospitals still insist on them, as do some European countries. He concludes his review with a defence of the brainstem criteria, which in practice are those used by doctors who maintain that death of the whole brain is the basis of brain death. The Editors comment that `readers will judge whether Plum's conclusion is a savvy compromise or the beginning of a more widespread retreat from the notion of whole brain death'.
Pallis (the only British author) makes a more aggressive defence of the brainstem criteria, pointing out that these render irrelevant the anomalies that trouble those concerned to diagnose whole brain death. These include the persistence after brain death of EEG activity and of neurohumoral regulation of ADH secretion. Other neurologists here deal with this matter of how much of the brain must be dead by emphasizing that death is a process rather than an event, and that what matters for the whole brain definition is that there should no longer be any clinical evidence of critical or integrative brain function. This reiterates the assertion of the President's Commission that mere physiological activity, not discernible clinically, is irrelevant. In spite of these various doubts about the validity of the claim that the whole brain is dead, it is concluded that the criteria for brain death are probably the most reliable and valid in the whole of medical practice. That there is evidence that many doctors in the US do not always assiduously apply all of them does not make these criteria any less valid.
There is debate about the time of death—which functions have to have ceased and when it is known that cessation is irreversible? Several authors refer to the different purposes for which it has seemed necessary to define death, but one chapter is entitled the `Unimportance of Death'. This considers it unrealistic to expect the same criteria to define when it is appropriate to withdraw treatment, to harvest organs or to dispose of the body and assets of the deceased. Only for the last purpose is it necessary to define death, and for that the traditional cardiac criteria are required.
The demand for legislation about brain death in the US came largely from doctors seeking protection when harvesting organs, according to a leading academic lawyer who believes that if transplantation had evolved more slowly and gained gradual acceptance, no legislation would have been necessary. He and other contributors believe that doctors exaggerated the risk of litigation in these circumstances. Protection for doctors was supposedly gained by claiming that brain-dead organ donors were dead, but this insistence on the `dead donor rule' was an unexamined assumption. Indeed it has led to the offer also of a higher brain definition of death, which would declare vegetative patients dead in order to allow treatment to be withdrawn and organs taken. But treatment is regularly withdrawn from a wide range of patients for whom it is considered futile without any suggestion that they are already dead, and in the litigious climate in which medicine is practised in the US no doctor has ever been successfully prosecuted for such withholding or withdrawing of treatment. It would be better to accept criteria for treatment withdrawal and for organ removal without requiring the clinical and legal contortions needed to declare death. This could also allow donation from anencephalics without deciding that they are dead. It is ironic that the UK, one of the few countries where brain death legislation has been deemed unnecessary, is the only place that requires court approval before artificial nutrition and hydration can be withdrawn from patients in the persistent vegetative state.
The chapter titled `The conscience clause' notes that there have been formal objections to brain death from Orthodox Jews and some fundamentalists and Catholic pro-life campaigners. In some American states, the law is that death shall be pronounced when whole brain death criteria are satisfied, in others that death may be pronounced, leaving it to the doctor's discretion. Only in New Jersey is there specific provision for religious objectors, in an individual case, to insist on asystole before death is declared. Veatch argues that it is difficult to limit such choice to those with religious objections, and that all people might be given the choice to accept their own death being declared by cardiac, whole brain or higher brain criteria, via an advance directive or appointed surrogate. Whole brain death would be the default definition, if no opinion had been expressed.
The Editors' introduction to three chapters on public attitudes contrasts the absence of public discussion of brain death with the continuing interest in debating when life begins. The push for further redefinition of death comes from a small group of academics who seem concerned at the public's lack of concern. Surveying the empirical literature on attitudes there is much more debate about transplantation than specifically about brain death. The public remains confused about brain death, the vegetative state and coma and the possibility of recovery from each. The chapter on Christian fundamentalism comments on the tendency of adherents to be suspicious of technological advances and strong on the sanctity of life. Whilst against euthanasia and the higher brain definition of death, however, most groups accept whole brain criteria for death and are not opposed to transplantation. The chapter on Jewish attitudes accepts that many Jews do not follow the dictates of the Orthodox. The latter reject treatment withdrawal or refusal, with personal autonomy much less respected than by other religions. Transplantation is approved but there is still debate on whether the whole brain definition of death is acceptable—many Orthodox Jews would reject it.
The section on problems in three other countries illustrates, the Editors claim, concerns that exist under the surface in the US. Before Denmark passed a law accepting brain death in 1990, kidneys were taken from patients whose hearts had stopped but in whom it was usual to attempt to restart the heart by resuscitation before removing the organs. In 1985 a Committee on Transplantation recommended accepting brain death criteria and the Minister of Justice proposed a Bill in 1987, which met with surprising opposition in the media. A Council of Ethics was set up in 1988, with only three doctors among its 17 members; this was to deal with genetics and assisted reproduction, but it also took up the brain death debate. Its report in 1989 recommended taking organs once brain function had ceased during the death process, but that the time of death was when the heart later stopped. There followed an unprecedented public debate, actively promoted by the Council. It distributed 14 000 copies of its report across the country, set up more than 200 local debate meetings and sent a video film to more than 500 local groups. More than 1000 newspaper articles were written. Public opinion was 80% in favour of the minority on the council, who recommended declaring death when the brain death criteria were satisfied. The law passed in 1990 was virtually identical to that proposed in 1987 before the public debate.
In Japan the story was quite different and much more fractious. The debate has been going on for 30 years but was partially resolved by a law passed only in 1997, many years after other countries, and 12 years after a Committee was set up by the Ministry of Health to consider the matter. Throughout this time one paediatric neurologist had organized steady opposition to brain death, which she saw as just an aid to transplantation. Several scandals involving transplant surgeons kept up a negative reaction to brain death, although by 1988 the Japanese Medical Association voted to accept the concept. But there were divisions between specialties; the association of neurologists and psychiatrists feared that the handicapped might become unwilling donors. In 1992 a cabinet committee was deeply divided, but a majority decision was in favour. However, this was rejected the next day by the Minister of Justice and the police. Some resistance rested on the traditional lack of good communication between Japanese doctors and their patients, leading to mistrust of the medical profession. There was, however, persistent search for public consensus, with support increasing from 29–55% between 1983 and 1995, as reflected in 15 national surveys. Although some of the resistance was based on traditional values the debate was largely secular with no participation by religious organizations. The recent law applies only to patients for whom permission has been given for organ donation.
In Germany there was early acceptance of brain death, and this practice went unchallenged for over 20 years, but then ran into trouble. Two months before the Harvard criteria, a German committee published similar criteria and further guidelines came in 1982. Both Protestant and Catholic churches accepted brain death and transplantation and there were few dissidents. However, the drafting of legislation in 1995 to legalize what had already become accepted practice stirred up opposition leading to public hearings for the Parliament. The Berliner Initiative against brain death comprised many doctors, theologians and others. However, medical associations and scientific societies supported the whole brain definition, and the churches did not retract their earlier support. Eventually the law was passed in 1997. The opposition arose partly from memories of the Nazi period, together with concern at the persisting paternalism of German doctors, limited public debate and the lack of organizations promoting patient rights.
These accounts of years of acrimonious dispute in three countries should make us grateful that our few months of debate in 1980/81 seemed to settle the matter quite quickly. But the lesson of Germany, where a peaceful consensus was challenged after many years, and the fears of the editors of this book that the same might happen in the US, should alert us to the need to maintain good practice in this sensitive field. This means ensuring not only that all involved are fully informed about the UK criteria, but that they apply them rigorously; also that they deal sensitively with the families involved.
The section on public policy faces the fact that public perception is more important than scientific reality, and this is reflected in how the law takes liberties with biology. For example, it treats adoptive parents as fully parents, and acknowledges change of sex although the chromosomes remain the same. Law is supposed to reflect the will of the public, raising in this area how much the public wants or needs to know about the ambiguities of the biology of death or can understand them. Can the public cope with death as a process and life as a transitional category? Would debate about the higher brain definition of death undermine confidence in whole brain or brainstem definitions of brain death? It is interesting that the three countries that have had the most heated debates over the issues have each in the end come to accept the concept of brain death.
The final section on `The future of death' acknowledges that in academic biological and philosophical circles there are challenges to the whole brain concept, but that only minority religious groups wants to return to the cardiac criteria. The need is to minimize harm from prolonged futile treatment or from premature organ removal. It seems better to decouple death from the sequence of perimortal actions and to allow free choice from a menu of alternative definitions of death.
The final chapter by a Yale law professor is a masterly summary. He considers that the calls for changes in definitions and the law are not persuasive, albeit accepting that the present criteria for brain death are conceptually incoherent. These criteria are clearly useful clinically, and if all were applied there would be few false positives. There is serious doubt whether changes would increase the availability of organs or reduce prolonged futile treatment and its cost in distress to families and in dollars. There is already choice regarding treatment refusal or withdrawal and the donation of organs. To impose choice about when death is declared would be ideologically polarizing, the danger of which is seen in the sometimes violent controversy about abortion. His soundbite is that the US needs another such divisive issue like it needs a second hurricane Andrew. Indeed, he admits that this might imply that the manuscript of this book might have been better burnt than published. Less cynically, he hopes that it will not provoke public controversy, but will rest quietly on library shelves so that `in 10 years we might reconvene to try to explain the persistence of the confusions we had identified'.
Notes
By Stuart J. Youngner, Robert M. Arnold and Renie Schapiro.
1999. Baltimore: Johns Hopkins University Press.
Price £45. Pp. 348. ISBN 0-8018-5985.
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