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Home Draft for Consultation: A CODE OF PRACTICE FOR THE DIAGNOSIS AND CERTIFICATION OF DEATH Dr David Hill's Response to the Draft Contribution to the formulation of the Draft for Consultation from David Hill and David W Evans Dr Peter Simpson MD PRCA Convener, Academy of Royal Colleges Working Group revising the Code of Practice for the diagnosis of brain stem death The Royal College of Anaesthetists 48-49 Russell Square London, WC1B 4JY Dear Dr Simpson, A Code of Practice for the Diagnosis of Brain Stem Death - 1998 We understand that your Working Group is charged with revision of the above booklet which was published by the Department of Health in March 1998. The Introduction1 to that booklet was titled �Cadaveric Organs for Transplantation - a Code of Practice Including the Diagnosis of Brain Death�, although the use of the term �brain death� had been discouraged by the 1995 Working Party2 and the Secretary of State for Health wrote3, in 1997, �The terms �brain death� and �brain stem death� can be confusing, and the former should not be used in the context of organ donation�. Since that time there have been many more challenges to the several concepts of �brain death� and the means of their diagnosis worldwide (vide infra). Indeed, it seems that there is now an emerging consensus that �brain death� diagnosed by any of the protocols in current use worldwide is not death. We ask, therefore, that your Working Group gives the most serious consideration to the fundamentals of diagnosing death for transplant purposes with a view, on this occasion, to providing clear advice to the Department of Health on the diagnosis of death and on the content of its transplant-related literature. To that end, we bring the following points to your special notice. 1. In the UK, published challenges to the diagnosis and certification of death on so-called �brain death� grounds date back to 19804,5. Accounts of our efforts6,7 to counter the bad science underpinning that practice can be found in an anthology titled �Beyond Brain Death : the Case Against Brain Based Criteria for Human Death� published in 2000 (Kluwer Academic Publishers, ISBN 1-4020-0366-8). Since then we have maintained our challenge in correspondence with the Department of Health, and with our Members of Parliament, and by means of contributions to journals and to bmj.com8-15. From other parts of the world, there has been increasing criticism of �brain death� and its diagnosis since the Youngner, Arnold and Schapiro anthology16 of 1999. Noteworthy examples include Lock�s (2001) �Twice Dead - Organ Transplants and the Redefinition of Death�17, the 2001 special issue of the Journal of Medicine and Philosophy18, the 2002 critique by Karakatsanis and Tsanakas19, Kerridge et al�s20 (2002) plea for the reinstatement of irreversible loss of circulation as �the major defining characteristic of death�, Truog and Robinson�s (2003) article in Critical Care Medicine21, Machado and Shewmon�s (2004) �Brain Death and Disorders of Consciousness�22, the September 2004 issue of the Kennedy Institute of Ethics Journal23 and a recent contribution24 from nurses involved in critical care. Some of these publications, such as that of Veatch25 - and that by Singer26 earlier - provide revealing insights into the manner in which �brain death� was introduced as a basis for the certification of death. It was clearly not founded on any new and agreed philosophical concept of human death. Nor was it underpinned by sound science6. As Truog and Robinson21 say, �the concept fails to correspond to any coherent biological or philosophical understanding of death�. The present situation was summed up thus in a statement27 to the Pontifical Academy of Sciences �Signs of Death� conference held earlier this month in Rome :- �there is widespread doubt and growing conviction that brain death is not death among some of the finest scientists, philosophers, and theologians and among persons of such different world-views as Peter Singer and Robert Spaemann�. That assessment applies at least equally, of course, to the state of lesser brain incapacitation known as �brain stem death�. In light of the above, there are now calls20, 21, 28 for an end to the �dead donor rule� and all obfuscation in regard to the status of patients diagnosed �brain dead� or �brain stem dead� by means of one or other of the many protocols in use for the purpose worldwide29 . The very number of these speaks to the lack of consensus about diagnostic practice and to the fact that the clinical syndromes so diagnosed cannot be considered one and the same true entity. 2. The claim that the UK Code of Practice suffices for the diagnosis of death of the whole brain - or of death of the brain �as a whole� - has long been abandoned. Protocols which involve similar brain stem testing plus additional �higher brain� testing by electroencephalography, and which purported to establish �whole brain death� (the U.S.A. legal requirement for certification of death), are no longer universally accepted as adequate for that purpose (vide supra). The state referred to in the 1998 Code of Practice as �brain stem death� is clearly a lesser state of brain tissue loss than �brain death�, in both conceptual and clinical terms. It is, therefore, no longer possible to equate the state diagnosed by the Code of Practice procedure with the death of that patient on the 1979 Memorandum30 premise (that all brain function had irreversibly ceased) or, indeed, on any of the philosophical concepts of human death allegedly served by �whole brain death� protocols. If, despite the growing tendency worldwide to abandon all forms of death certification on purely neurological grounds, your Group continues to advise that its �brain stem death� syndrome can be regarded (and certified) as death, then it has a clear duty to specify the precise grounds rather than simply relying upon established practice. The 1995 Working Party 2 �suggested that �irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe� should be regarded as the definition of death�. This definition was �recommended� by the 1998 Working Party (Code of Practice, page 4). If this is now to be the premise upon which your Working Group continues to advise that its �brain stem death� syndrome is death, then this must be clearly and unequivocally stated - recognizing that this is an highly idiosyncratic concept of human death, for which there is certainly no general philosophical support. It is also open to the following scientific objections. a) Consciousness is not understood, nor even defined. We have no means of testing for its absence - still less for permanent loss of the capacity for its return in some form under certain conditions. Setting aside the problem of long-term memory stored in normally inaccessible parts of the hippocampus (or elsewhere), it must be said that we do not know what might be termed the minimum neuroanatomical substrate necessary for the arousal of consciousness and cannot, therefore, say with certainty that there is no possibility of its recovery in some form while life remains in any part of the brain. The old idea that the arousal system is confined to the brain stem (however defined) is no longer universally accepted31. Machado32, in pointing out that �brainstem death alone is not brain death�, has postulated that �stimulation of the non-specific thalamic nuclei might produce some degree of arousal�. It is interesting that Pallis33 admitted, as long ago as 1985, that these structures may be alive in patients diagnosed �brain stem dead�. The arousal mechanism (ascending reticular activating system) has been thought of, by some, as more of a metaphor than a discrete anatomical entity. But even when it was believed to be confined to the brain stem there was the difficulty that it cannot be specifically tested. Its permanent loss of function can only be inferred, i.e. when the whole of the brain stem has been shown to be permanently functionless (destroyed). The Code of Practice tests do not have the power to establish that state34. There is no requirement to establish that the medullary cardiovascular centres are permanently out of action. There is no evidence for the assumption that the well-recognised haemodynamic responses to organ harvesting surgery35 are not mediated via the medulla.These and the motor responses to surgery (paradoxically for a cadaver) require some form of anaesthesia36. Lower oesophageal reflexes and evoked responses are not sought6,34,37,38. The spontaneous co-ordinated movements of the Lazarus phenomenon are not adequately explained. It is clearly not safe - even on the simplistic understanding of consciousness which ascribes to the brain stem a quintessential r�le - to assume that patients whose brain stems have not been rigorously tested for signs of remaining life have permanently lost the capacity for consciousness. b) Permanent loss of the capacity to breathe is not established by the Code of Practice apnoea test in current use. While much has been written about the dangers of apnoea testing39,40, which are offically recognized in Japan41, it must be said that it relates, in any case, only to the hypercarbic drive stimulus. The medullary respiratory centre is not subjected to the ultimate anoxic drive stimulus, the power of which may sometimes be seen (agonal gasping) when ventilators are finally disconnected after negative response to the prescribed Code of Practice test if organs are not sought for transplantation. It seems to us, therefore, that it is not reasonable to continue to equate the pre-mortal clinical state �brain stem death�, as diagnosed by the Code of Practice, with death itself - even if death be defined as recommended in the 1998 Code. 3. There are obvious implications for the wording of the Department�s NHS Organ Donor Register forms and for its Donor Cards and other transplant-oriented literature. The concept of �death� to be used for transplant purposes is not explained and may be unknown to, and at variance with, that of the potential donor. The phrase �a patient declared dead following brain stem testing� currently recommended by UK Transplant42 is not equivalent in meaning to �after my death� and will not do as a description of the state donors will be in when operated upon for the removal of their organs. We trust that your Working Group will address this vitally important aspect in the interest of avoiding misinformation of the public, particularly as it becomes more aware of the worldwide concern about the misdiagnosis of death in the perceived interest of the organ transplantation programme. Great sensitivity will be required but, in the long run, that interest is likely to be better served by open-ness and honesty. Yours sincerely, David J. Hill David W. Evans References 1. A Code of Practice for the Diagnosis of Brain Stem Death. Department of Health, March 1998, p.1 2. Criteria for the diagnosis of brain stem death. Working Group convened by the Royal College of Physicians and endorsed by the Conference of Medical Royal Colleges. J Roy Coll Physns of London 1995;29:381-2 3. Milburn A. Personal correspondence with DWE, 7th September 1997 4. Evans DW, Lum LC. Cardiac transplantation. Lancet 1980;1:933-4 5. Evans DW, Lum LC. Brain death. Lancet 1980;2:1022 6. Evans DW. The demise of �brain death� in Britain. In Beyond brain death : the case against brain based criteria for human death 2000. Eds. Potts M, Byrne PA, Nilges RG. Kluwer Academic Publishers, Dordrecht etc. 7. Hill DJ. Brain stem death : a United Kingdom anaesthetist�s view. In Beyond brain death - Ibid 8. Evans DW. Barnard�s first transplants and concepts of death. bmj.com 2001 (Response to Hoffenberg) http://bmj.bmjjournals.com/cgi/eletters/323/7327/1478#18279 - and see also Responses from Coimbra, Hill, Jarvis, Potts and Woodcock to Hoffenberg�s article on this site 9. Evans DW. Open letter to Professor Eelco Wijdicks, author of book on brain death. bmj.com 2002 http://bmj.bmjjournals.com/cgi/eletters/325/7364/598/a#27760 10. Evans DW. Rethinking our criteria for death. Lancet 2002;360:179 11. Evans DW. The demise of brain death : time to tell the truth. Invited editorial for BMJ, as commentary on Truog & Robinson (2003), rejected March 2004 12. Evans DW. Brain death is not death. Commentary on Truog &Robinson (2003) for the Lancet, rejected May 2004 13. Evans DW. What is �brain death�? A British physician�s view. Contribution to Pontifical Academy of Sciences conference �Signs of Death�, Vatican City 3-4 February 2005 14. Hill DJ. Brain death : a United Kingdom anaesthetist�s view. February 2005, Ibid 15. Potts M, Evans DW. Does it matter that organ donors are not dead? Ethical and policy implications. J Med Ethics 2005 (in press) 16. Youngner SJ, Arnold RM, Schapiro R (Eds.). The definition of death - contemporary controversies 1999. Johns Hopkins Press, Baltimore & London 17. Lock M. Twice dead - organ transplants and the reinvention of death 2001. University of California Press, London 18. Lustig BA (Ed.). Revisiting brain death. J Medicine and Philosophy 2001;26 (5) 19. Karakatsanis KG, Tsanakas JN. A critique on the concept of �brain death�. Issues in Law & Medicine 2002;18:127-141 20. Kerridge IH, Saul P, Lowe M, McPhee J, Williams D. Death, dying and donation : organ transplantation and the diagnosis of death. J Med Ethics 2002;28:89-94 21. Truog RD, Robinson WM. Role of brain death and the dead-donor rule in the ethics of organ transplantation. Crit Care Med 2003;31:2391-6 22. Machado C, Shewmon DA (Eds.). Brain death and disorders of consciousness 2004. Kluwer Academic/Plenum Publishers, New York etc. 23. Youngner SJ, Schapiro R, Siminoff LA (Eds.) Death and organ procurement : public beliefs and attitudes. The Kennedy Institute of Ethics Journal (Special issue) September 2004;14 (3) 24. Sundin-Huard D, Fahy K. The problems with the validity of the diagnosis of brain death. Br J Crit Care Nursing 2004;9:64-71 25. Veatch RM. Abandon the dead donor rule or change the definition of death? In Kennedy Inst Ethics J 2004 - Ibid 26. Singer P. Is the sanctity of life ethics terminally ill? In Brain death 1995. Ed. Machado C. Elsevier Science B.V. 27. Seifert J. On �brain death�, page 17. Contribution to the Pontifical Academy of Sciences conference on the Signs of Death, Vatican City, 3-4 February 2005 28. Woodcock TE. New act regulating human organ transplantation could facilitate organ donation. BMJ 2002;324:1099 29. Wijdicks EFM. Brain death worldwide : accepted fact but no global consensus on diagnostic criteria. Neurology 2002;58:20-25 30. Conference of Medical Royal Colleges and their Faculties in the UK. Memorandum on the diagnosis of death 1979. BMJ;1:332 31. Jones JG, Vucevic M. Not awake, not asleep, not dead? Int Care Med 1992;18:67-8 32. Machado C. A definition of human death should not be related to organ transplants. J Med Ethics 2003;29:201-2 33. Pallis C. Defining death BMJ 1985;291:666 34. Evans DW, Hill DJ. The brain stems of organ donors are not dead. Catholic Medical Quarterly 1989;40:113-121 35. Wetzel RC et al. Haemodynamic responses in brain dead organ donor patients. Anesthesia and Analgesia 1985;64:125-8 36. Hill DJ, Munglani R, Sapsford D. Haemodynamic responses to surgery in brain dead organ donors. Anaesthesia 1994;49:835-6 37. Facco E, Munari M, Gallo F, Volpin SM, Behr AU, Baratto F, Giron GP. Role of short latency evoked potentials in the diagnosis of brain death. Clinical Neurophysiology 2002;113:1855-66 38. Naquet R. The history of brain death in France. Contribution to Pontifical Academy of Sciences conference, Vatican City 3-4 February 2005 39. Coimbra CG. Implications of ischemic penumbra for the diagnosis of brain death. Braz J Med Biol Res 1999;32:1479-87 40. Coimbra CG. The apnoea test - a bedside lethal �disaster� to avoid a legal �disaster� in the operating room. Contribution to the Pontifical Academy of Sciences conference 2005, Ibid 41. Watanabe Y. Controversies on brain death in Japan � Contribution to the Pontifical Academy of Sciences conference 2005, Ibid 42. UK Transplant Organ Donor Registry Team Leader. Personal correspondence with DJH, 28th January 2005 Edwards SD, Forbes K. Nursing practice & the definition of human death. Nurs Inq 2003;10(4):229-35 - added later by supplementary letter. |