The UK Definition of Death

David Albert Jones

'Nor can we remain silent in the of other more furtive, but face no serious and real, forms of less euthanasia. These could occur for example when, in order to increase the availability of organs for transplants, organs are removed without objective and respecting criteria which verify the adequate death of the donor.' Evangelium Vitae 15

physicians but the professional body as a whole that should, and has, laid down procedures to be followed, and criteria to be fulfilled before someone is declared dead. Thus, the BMA has acted responsibly in laying down guidelines for the diagnosis of death in ordinary and in extraordinar y circumstances. Yet, behind questions of the particular judgement and agreed criteri there is a further question to be a asked. This is the broader question of the definition of death that is embodied in these criteria: With any injury, disease or syndrome a doctor's judgement is measured against general and agreed criteri of clinical judgement. These a criteria concern what effects are symptomatic of what d iseases. Fever may point to infection, but it may be caused by something else; pain may be caused by an injury, but injuries may have been sustained without the same telltale pain. It requires some understanding of the underlying state and the cause of the trouble if correct criteria are to be established. In the area of human death the increasing complex ity of the cases, which medical technology has itself produced (because of the development of intensive care medicine), has lead to questions not only at the level of particular case or agreed , but s criteria questions about the very meaning of human death. Death is not just another disease that can be specified, analysed, and catalogued as viral or bacterial, infectious or auto-immune. Death is the final cessation of life. Thus defining d eath requires more than medical and technical ex pertise: It

The definition of death Sometimes it will be obvious to any reasonable observer that someone is dead, or alternatively, that someone is still alive. Someone who is breathing and talking and walking around is obviously alive. Someone whose body is rotting away and hanging off the bones is obviously dead. However there are some cases, perhaps many cases, wh ere it will not be obvious to an unqualified layman whether someone is alive o r dead. In these cases it is the decision of competent physicians that decides the issue. In the UK the independent judgement of two physicians is required before someone can be declared dead. Thus, the judgement of the moment of death in the particular case is obviously a clinical one. However it is possible to push the question back a stage and ask b y what criteri the doctors are to make their a decisions. Who decides what are general sufficient conditions to be fulfilled before someone is declared to be dead? This is not simply a matter to be left up to individual practitioners, but seems to d emand some generally and publicly agreed standards against which individual jud gements can be tested. Here it is not the individual

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

2 This longstanding definition of death was critically undermined b y developments in medical technolog y. First, the introduction of assisted ventilation and heart-b ypass machines showed that the biological functions of lung and heart could be maintained artificially. The delivery system could be replaced, and thus they could no longer be considered constitutiv of human life. Then in 1967e the first human heart transplant operation was successfully performed. If the heart could be bypassed or even entirely replaced then it could not contain the essence of the human person. Ever y organ seemed to be replaceable in this way apart from one, the human brain. Your heart can die without you dying, but it would seem that, if your brain dies, you die. Assisted ventilation had altered people's understanding of death but also it produced a new clinica l condition that could not have been observed before. This occurred in several patients who had suffered massive head tr auma (due to external or internal causes) but who were sustained in intensive care. Some such patients were discovered to have lost al responsiveness, even the ability to l breathe spontaneously. This ver y severe and short-lived syndrome was first investigated in France where it was called coma depasse . It only existed under conditions of assisted ventilation, for without such assistance the patient could not breathe and the rest of the system soon collapsed. In the UK this clinical syndrome was identified with the complete functional destruction of the brain, hence it was called brain death . The first pronouncement from the British medical establish ment on brain death was mad e in 1976 in a paper of the Conference of the Medical Royal

requires also some agreed understanding of what is constitutive of human life, and what it is that must be absent before the person can be said to be dead. This is not a simple worry about misdiagnosis (as though ever yone agreed about what it is that is to be diagnosed and disagreed only about the safety of pr esent criteri ). One must first ask the question a about what it is that is supposed to be being diagnosed. Fo r if there is confusion at this level, there will be confusion all the way along the line. To gain an understanding of this question, it is helpful to trace the history of the development of definitions of death in the UK. Development of the definition of death in the UK Before the 1960s human death was primarily understood and diagnosed by cardio- pulmonary criteria. The irreversible cessation of breathing and heartbeat, of the functioning of the lungs and heart, constituted the death of the person as a whole. This seemed quite obvious, for the heart and the lungs comprise the delivery system necessar y for the rest of the body to receive oxygenated blood. Without functioning heart and lungs the rest of the body could not survive. A person might die from being crushed or incinerated so that the whole bod y was destroyed together, but if death were slow and lingering the final moment was determined by the fact that breathing and heartbeat could no longer be maintained. For generations of doctors the two most significant signs of life were heartbeat (and so pulse) and breathing. On the basis of the confirmed and persistent absence of these vital signs, the person was to be declared dead.

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

3 the diagnosis of brain stem death ". This document encourages the use of the more 'cor rect' term, 'brainstem death' rather than 'brain death' and, for the first time, attempts to give a definition of death that will explain why brain death implies the death of the patient. 'It is suggested that 'irreversible loss of the cap acity for consciousness, combined with irreversible loss of the capacity to breathe' should be regarded as the definition of death' While this definition seems curiously ad hoc , it is certainly helpful in making explicit the definition of death that underlies the present criteria. However, before analysin g this proposed definition, it would be useful to examine the divergent views that underlie the present practical consensus. Practical pressures The acceptance of the equivalence of brain death with the death of the person has not been made in a vacuum. Various practical pressu res have also shaped this consensus. Two are most prominent [Younger (1992), McCullagh (1993)] . First a declaration of death can allow costly intensive care to be withdrawn. Perhaps there are other circumstan ces that would allow medical support to be withdrawn, but none are so clear and free from ethical difficulties as the fact that the patient is dead! The second, and with out doubt the major factor behind the political acceptance of brain death as death, is the development of transplant medicin . Transplant techniques e require a source of donor organs in good condition. The organs must be alive even if the donor is dead.

Colleges entitled "Diagnosis of brain death". This document describes the procedures for the diagnosis and asserts that for a diagnosis of brain death what is required is the irreversible loss of all function of the brainstem [whence the term 'brainstem death' was coined]. However, nowhere in this document is brain death equated with the death of the patient. Rather, brain death is described as "accepted as being sufficient to distinguish between those patients who retain the functional capacity to have a ch ance of even partial recovery from those in whom no such possibility exists." In other words, a diagnosis of brain death implies that the patient will certainly not recover, not that the patient is dead already. A second pronouncement was published in 1979, also from the Conference of the Medical Royal Colleges, and is entitled "Diagnosis of death" [note the shift in title]. No chan ge was made to the diagnostic protocol, but now it is stated that: "brain death represents the stage at which a patient b ecomes truly dead." No ex planation is given for this massive leap in interpretation. All that is said is that brain death is the point at which "all functions of the brain have permanently and irreversibly ceased. " During the 1980s and 1990s significant medical evidence has mounted against the claim that brainstem death, as diagnosed by UK criteria, is the point at which "all functions of the brain have permanently and irreversibly ceased." In the face of medical uncertainty, and the consistent confusion over why brain death should be identified with the death of the patient , a third document was published in 1995. This appeared in the Journal of the Royal College of Physicians, and is entitled "Criteria for

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

4 days, very occasionally a few weeks. " Even if this assertion were true, and it is not incontrovertible, this does not resolve the question of the status of those patients during those days or weeks. Certain pro gnosis is not the same as present status. Certainlydying-in-days- o r-weeks is not the same as dead! Perhaps it is thought that patients who are unconscious and who are dying are not significantly harmed b y having their life shortened, while the recipient is helped enormously. A survey among healthcar e professionals in the USA found almost a third of respondents thought this was the reason wh y brain dead patients were counted as being dead [Youn ger (1989)]. It seems likely that many p eople in the UK, even within the medical pr ofession, also think in this way. This contributes to the appearance of a consensus, but it is a fragile one. How should we treat patients who are certainly dyin g but who are not unconscious? If someone who is dying wishes to donate his organs, why could they not be harvested before his death? [For otherwise it might be impossible to retrieve his major organs.] How should we treat patients who are unconscious but who are not dying, like those in a so-called 'p ersistent vegetative state'? they be used for their organs? Could Whatever our answers to these questions it is clear that they take us far away from the simple identification of brain death with death itself. These further questions are closely linked to support for euthanasia [explicit in Singer (1995)], which again is an issue that needs to be examined explicitly and publicly and not simply taken for gr anted. Even if this utilitarian mindset does exist within the medical profession in the UK, which one hopes is rarely the case, it is not the official

Traditional moral and legal norms have only allowed the taking of organs from live donors if the process of donation did not seriously har m the donor. Transplant teams have therefore come to rely heavily on post mortem organ retrieval. So as to obtain organs in good condition, the organs need to be 'harvested' as soon as possible after death. If brain death is equivalent to death then sur geons can r emove organs while the heart is still beating and the organs are still perfused with oxygenated blood. Many sorts of transplantation are o nly possible because organs can be taken in this way. The great rise of transplant medicine has, then, been wholly dependent upon organ harvesting from so called ' beating-heart cadavers ', that is, patients who are determined to be dead on the basis of brain death criteria . These two practical pressures have ensured a consensus as to what may be done with patients declared to be brain dead. Ho wever, there is in fact no such consensus as to why brain dead patients can be treated as dead. The 1976 declaration on the diagnosis of brain death did not describe a brain dead patient as being actually dead, but brain death was thought a reliable test for hopeless prognosis and thus for the removal of unn ecessary treatment. Many in the profession still talk and act as though the essential question were the one of prognosis. If brain dead patients have no hope of recovery then, seemingly, medicine can do them no good, and therefo re removal of their organs can do them no harm. The debate about brain death often focuses narrowly on recovery. The latest official document on brain death continues a long line in repeating that "Even if ventilation is continued, both adults and children will suffer cessation of heart beat within a few

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

5 destroyed. Residual hormonal function, maintenance of blood pressure and the presence of certain reflexes, as well as the presence, in so me cases, of measurable electrical activity in the brain, particularly in response to stimuli, all cast doubt of the supposedly 'total' character of brain death [McCullagh (1993), Byrne (1993), Kaukinen (1995)]. Most strikingly, the beating-heart cadaver often has to be anaesthetised , or paralysed, to prevent it reacting to the operation; otherwise blood pressure sometimes rises dramatically when the incision is first made [Evans (1989)]. The supposition that the body cannot maintain itself as a system without a functioning brain is also one that is open to question. There have been cases, particularly among children, where brain dead p atients have been 'maintained' for many weeks. The continued functioning of the bod y as a whole - blood flow, metabolism, bod y heat, blood pressure, growth, healing is evidence that the body is not dead [Seifert (1989), Jones (1995), Shewmon (1997), cf. Jonas (1974)]. For such reasons man y people, again including medical professionals, prefer to believe that what is significant is not the death of the body, but the 'death of the person' [Gillon (1990), Gillet (1990), Lizza (1993)]. The complete functional destruction of the brain cuts the person off from all personal life and consciousness, not temporarily but permanently. What is most characteristic of human life personal interaction - is now impossible. It seems that whatever we wish to say about the continued sustaining of the body, the person is 'gone'. The only thing that stops persistently 'vegetative' patients from being defined as brain dead is the gr eater possibility of recovery or of

rationale for identif ying brain death with death. It is here made explicit only so that it can be set aside. The medical profession clearly thinks that brain dead patients are actually an d truly dead, not just 'as good as dead'. Personal death There is however a further con fusion that is much more evident in the official and unofficial statements of the British medical profession on this issue. The profession is confused as to whether brain death is thought of as death because it implies the death of the body as a whole, or whether braindeath is thought of as death because it signals the irreversible end of mental life. On the one hand it has been argued that the brain is the organ that integrates and organises the rest of the body. So, it is argued, when the brain is completely dead, the body has no centre and cannot be thought of as a living organism. The organs may still be alive but the system as a whole is defunct and only the continual support of artificial ventilation gives the temporary appearance of continued life. In reality the body is dead. This argument has the great benefit of keeping the traditional account of death: death is the death of the body as a whole. It explains why brain death can be thought of as death, and does not involve any new and intractable ethical problems - like those of euthanasia. However, this approach, which is the standard approach in the USA [Presidents Commission (1981), Lamb (1985), (1996)] and has been used very widely in this country, suffers from empirical counterevidence. First it is not clear that, in the syndrome usually diagnosed as brain death, the whole brain is entirel y

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

6 An agreed UK definition of death In this contex t one can see what led to the curious and ad hoc 1995 proposal for a definition of death. On the one hand brainstem death as it is diagnosed in the UK clearly does not exclude all bodily functions. It excludes many but not all. Thus one basic vital function, the ability to breathe spontaneously, has been picked out as somehow the 'essential' sign of the life of the bod y. However, lack of spontaneous breathing on its own is clearly insufficient on its own, for it is possible to be dependent on a ventilator while still being conscious! So breathin g and consciousness are just put side by side as two signs of life, either of which is enough to count in favour of still being alive. But wh y just these two signs of life? Wh y is breathing so much more important than heartbeat, body heat or blood pressure? There is no convincing reason that can be given for just picking out this one sign of bodily life. If, on the other hand heartbeat and body heat do not count, why bother so much about spontaneous breathing? Surely once the 'person' is gone then al these functions are at the l level of autonomic biological reflex es. The proposed definition is, however, helpful for sev eral r easons.

misdiagnosis. PVS is a less reliable diagnosis than brain death. However, while this solution [explicitly proposed as early as Beecher (1968)] has the virtues of being clear and of side stepping the empirical evidence for continued biological life for the body-as-a-whole, it represents a radically new definition of what constitutes human death. The human being is no longer seen as a living bodily organism, as a rational animal , but rather as a consciousness, a res cogitans . So being human and a living organism is not enough to qualify as being a person. It is also necessar y to be able to demonstrate consciousness. This is presumably because it is our rational, linguistic abilities that distinguish us from other animals. But, in that case, human beings who do not possess the ability to communicate linguistically, such as babies and the severely mentally handicapped, should also be excluded as non-persons. Life is no longer defined as human bodily life, and death is no longer defined as human bodily death, but extra qualifications are now being demanded. This attitude relies at some level on a dualistic separation of the human person from the bodily animal. While this idea appeals to a sort of popular philosophy, or popular religious separation of body and soul, in fact there are strong philosophical and theological arguments against this sort of dualism [Braine (1992), Kerr (1997)]. However we resolve the question, it is clear that it is not simply a medical matter or an uncontroversial piece of 'common sense'. Rather, it is a subtle conceptual or, if you like, metaphysical , argument and one that impinges on the traditional medical and legal understanding of death.

First it calls attention to the need for a definition of what constitutes death, which is more basic and more general than the current agreed criteri for the diagnosis of death.a Secondly it shows up vividly the weakness of the present working definition of death, more a reflection of actual practice than a rationally based definition in its own right. Thirdly it shows how the question of the definition of

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

7 Medical Association 340. 1968, 205, 337-

death, while it has important medical implications, is not itself a medical question, and thus the opinions of medical professionals have no more weight than those of other thinking people.

Braine, D., The Human Person: Animal and Spirit (1992) University o f Notre Dame Press, Indiana. Byrne, Paul A., Nilges, Richard G., "The Brain Stem in Brain Death: A Critical review" Issues in Law and Medicin 1993, 9(1), 3-21. e Conference of the Medical Royal Colleges (1976 ) "Diagnosis of brain death" British Medical Journal ii 1187-1188; also Lancet ii 1069-1070. Conference of the Medical Royal Colleges (1979 ) "Diagnosis of death" British Medical Journal i 332; also Lancet i 261-262. Evans, D. W., Hill, D.J., "The brain stems of organ donors are not dead " Catholic Medical Quarterly 1989, 40(3), 113-120. Gillet, G.R., "Consciousness, the brain and what matters" Bioethic 1990, s 4(3), 181-198. Gillon, Ranaan (Editorial, "Death") Journal of Medical Ethics 1990, 16, 34. John Paul II, Pope, Evangelium Vitae (1995) Catholic Truth Society, London. Jonas, H., "Against the stream" in Jonas, H., Philosophical Essays: From Ancient Creed to Technological Man (1974) Englewood Cliffs, NJ, pp. 132140. Jones, D. A., "Nagging doubts about brain death" Catholic Medical Quarterl 1995, 47(3), 263-273. y

A widespread consultation and examination of the question of a definition of death, at the political and legal level, would place this decision where it belongs, at the level of society and not just with medical practitioners. The combination of reasons behind the current practice has led to a consensus that is intrinsically un stable and a pattern of practice that is more questionable than it at first appears. The suggestion of this writer is that death should be defined as: The irreversible cessation of all integrated functioning of the human organism as a whole, mental or physical. Medical practitioners could argue in practice to what extent and how brain death or brainstem death fulfilled this definition, but death itself should not be defined in 'personal' or neuro physiological terms. Developments in intensive care and transplant medicine have raised questions that are not only of a practical but also o f a conceptual kind. Before discussion of particular medical can start there must be criteria idea of what constitutes human a clear death. Bibliography Beecher, H.K., "A definition of irreversible coma. Report of the ad hoc committee of the Harvard Medical School to examine the definition of brain death " Journal of the American

The Linacre Centre for Healthcare Ethics www.linacre.org

The UK Definition of Death

8 professionals" Journal of the American Medical Association 1989, 261(15), 2205-2210. Younger, S.J., "Definin g death: A superficial and fragile consensus" Archives of Neurology 1 992, 49, 570572.

Kaukinen, S., Makela, K., Hakkinen, V.K., Martikainen, K., "Significance of electrical activity in brain- stem death " Intensive Care Medicine 1995, 21, 7678. Kerr, F., Theology after Wittgenstein (2nd edition) (1997) SPCK, London. Lamb, D., Death, Brain Death and Ethic (1985) State University of New s York Press, Albany, NY (reprinted 1996 Avebury, Brookfield). Lizza, John P., "Persons and Death: What's metaphysically wrong with our current statutory definition of death?" Journal of Medicine & Philosophy 1993, 18, 351-374. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and B ehavio ural Research, Defining Death: Medical, Legal and Ethical Issues in the Determination of Death (1981) US Govern ment Printing Office, Washington. Seifert, J., "Is 'Brain Death' actual death?" The Monist (1993), 76 (2), 173-202. Shewmon, A. D., "Recovery from 'brain death': A neurolo gist's Apologia" Linacre Quarterly 1997, 64, 30-96. Singer, P., Rethinking Life and Death (1995) Ox ford University Press, Oxford. Working Group of Royal College of Physicians (1995) "Criteria for the diagnosis of brain stem death" Journal of the Royal College of Physicians of London 29, 381-382. Younger, S.J., Landefeld, C.S., et al., "'Brain Death' and organ retrieval: a cross-sectional survey of knowledge and concepts among health

The Linacre Centre for Healthcare Ethics, 38 Circus Road, London NW8 9SE England Tel. +44 (0)20 7266 7410 Fax +44 (0)20 7266 5424 [email protected] Registered Charity No. 274327

The Linacre Centre for Healthcare Ethics www.linacre.org