| Quote of the Week Archive 3 1 July 2006 onwards For the week starting 9 April 2007 The use of Living Donor Kidneys does come at a Price At an individual level, the risks associated with donor nephrectomy are borne largely by the donor. These include the risks of complications arising from invasive investigations (particularly angiography), the risks of surgical complications including death, and the long-term impact on risk of end-stage kidney disease and death… A/Prof Steve Chadban, PhD, FRACP Manager, ANZDATA Transplant Section Email anzdata@anzdata.org.au http://www.anzdata.org.au ANZOD Registry Report 2005 Australia and New Zealand Organ Donation Registry Adelaide, South Australia. Editors: Leonie Excell, Graeme Russ, Penny Wride Publications based upon ANZOD Registry information reported here or supplied upon request, must include the citation as noted above and the following notice: The data reported here have been supplied by the Australia and New Zealand Organ Donation Registry. The interpretation and reporting of these data are the responsibility of the Authors and in no way should be seen as an official policy or interpretation of the Australia and New Zealand Organ Donation Registry. For the week starting 2 April 2007 The Hunt is on "It is not unheard of for desperate patients with the means to use roadside bill boards for their appeals." USA confronts looming organ-shortage crisis Todd Zwillich The Lancet 2006; 368:567-568 DOI:10.1016/S0140-6736(06)69180-0 http://www.thelancet.com/journals/lancet/article/PIIS0140673606691800/fulltext For the week starting 26 march 2007 Are you a "SNOK"? "Snok" is a new term coined by Dr David Philby of the South Australian Department of Health. It stands for "Senior Next of Kin". For the week starting 19 March 2007 Who requires liver transplants? "Hepatitis C is the leading cause of liver failure requiring a transplant. 90% of Hep C is caused from dirty needles." Nikki Parkin HepC Council of South Australia Delivering a speech at the Homeless Health Day 2006 in Whitmore Square in Adelaide, South Australia. For the week starting 12 March 2007 Organ Tourists: Our shame? "…I am personally aware of a regular flow of patients from the United Kingdom to the so called Renal Belt comprising of underdeveloped countries and largely with poor outcomes…" Rasheed Ahmad MB; MSc; FRCP. Emeritus Consultant Nephrologist ‘Shalamar’, Woolton Park, Liverpool L25 6DU email :theahmads@aol.com http://bmj.bmjjournals.com/cgi/eletters/333/7571/746?ehom#144121 For the week starting 5 March 2007 Reading the fine print on becoming a kidney donor "The short-term risks include life-threatening haemorrhage, pulmonary embolism, pneumothorax, infection, transfusion-transmitted hepatitis and AIDS In the longer term, there is increased risk of hypertension and renal failure. The long-term psychological effects upon the donor are not known." "In another article elsewhere, Friedman and her colleagues did report 105 episodes of serious haemorrhage, blood transfusion being needed in at least 19 cases and reoperation being required in 29. There were 2 deaths and 2 patients developed renal failure. These figures were obtained by questionnaires sent to 893 transplant surgeons, only 24% of which were returned. While such a low response provides no basis for an estimate of the rate of occurence of these complications, it is clear that they are not rare." David W Evans, Retired physician Queens' College, Cambridge, CB3 9ET http://bmj.bmjjournals.com/cgi/eletters/333/7571/746?ehom#144121 For the week starting 26 February 2007 "35%" The five-year survival rate of hemodialysis patients in USA according to Kiran Toor, Resident Physician at the University of SanFrancisco , Fresno.93702 USA http://bmj.bmjjournals.com/cgi/eletters/333/7571/746?ehom For the week starting 19 February 2007 "It is well-known that our knowledge of the brain functions only cover a bare 10% of their spectrum; therefore art.1 of law 578/93 (of the Italian legislation) stating that "death is the irreversible cessation of all functions of the entire brain" is scientifically an absurdity, because it is not possible to declare an unknown function to be "ceased". “J'Accuse Against The Heart-Beating Brain Death" Professor Doctor Massimo Bondi L. D. Pat. Chir. e Prop. Clin. Universita di Roma "La Sapienza" Patologo e Chirurgo generale Nerina Negrello Presidente Lega Nazionele Contro la Predazione de Organi e la Morte a Cuore Battente LEGA NAZIONALE CONTRO LA PREDAZIONE DI ORGANI E LA MORTE A CUORE BATTENTE 24121 BERGAMO Pass. Canonici Lateranensi, 22 Tel. 035-219255 - Telefax 035-235660 lega.nazionale@antipredazione.org www.antipredazione.org C.C.P. 18066241 PRESS RELEASE 19th September 2006 For the week starting 12 February 2007 Donation after Cardiac Death (Non-heart beating donors) in the dying process may get the following treatment to preserve their organs for donation, none of which is therapeutic to the still living donor patient. "Several NHBD protocols permit ante-mortem pharmacologic interventions and/or ante-mortem or postmortem invasive procedures that do not benefit the patient. These interventions may perhaps hasten death, and in particular with postmortem invasive procedures, may be performed with neither family consent, nor the obligation to inform families subsequently that these procedures have been performed." "Retrieving organs from non-heart-beating organ donors: a review of medical and ethical issues" Christopher James Doig, MD MSc* and Graeme Rocker, DM MHSc * From the Department of Critical Care Medicine and The Office of Medical Bioethics, Faculty of Medicine, University of Calgary, Calgary, Alberta; and the Department of Medicine, Dalhousie University, and The Intensive Care Program, Queen Elizabeth II Health Sciences Centre, Halifax, Nova Scotia, Canada. http://www.cja-jca.org/cgi/content/full/50/10/1069 For the week starting 5 February 2007 Gonzalo Miranda was right "A bioethics professor at the Regina Apostolorum university, Legionary Father Gonzalo Miranda, pointed out how a study like this one has the potential to change widely-held views of people living in so-called persistent vegetative states. 'These studies,' he explained, 'have confirmed something I've upheld for years now: that a person in a vegetative state is not dead -- he or she is a live human. They are a person living in a bad state, but they are a person, so we must respect them.'" (Dr) Helen Watt Director Linacre Centre for Healthcare Ethics www.linacre.org Gonzalo Miranda was responding to the discovery by scientists that the brain of a woman in the persistent vegetative state responded to questions similarly to uninjured people. Medical News Today http://www.medicalnewstoday.com/healthnews.php?newsid=51473 Science http://www.sciencemag.org/cgi/content/abstract/313/5792/1402 Melaniephillips article in the Daily Mirror http://www.melaniephillips.com/articles-new/?p=449 For the week starting 29 January 2007 Chop them up brigade lose another potential source of organs Scientists from the United Kingdom and Belgium have discovered a woman in a persistent vegetative state who can understand and respond to verbal suggestions. They used functional magnetic resonance imaging five months after her accident to record brain responses to suggestions she imagine playing tennis and touring her house. She "displayed the same activated cortical areas in a manner indistinguishable from that of the healthy volunteers." Medical scientists have previously considered the part of the brain responsible for consciousness to be dead in those diagnosed as in a persistent vegetative state despite their bodies continuing to live. Organ transplant promoters have floated the idea of cutting these people up for organs and body parts. The study also raises the question whether those defined as "brain dead" for transplant purposes experience consciousness while being harvested. Medical News Today http://www.medicalnewstoday.com/healthnews.php?newsid=51473 Science http://www.sciencemag.org/cgi/content/abstract/313/5792/1402 Melaniephillips article in the Daily Mirror http://www.melaniephillips.com/articles-new/?p=449 For the week starting 22 January 2007 A moral challenge “Organ donation is fundamentally ugly - removing organs from bodies is distasteful no matter how you paint it. It is also, on balance, necessary. It also is consistent with what many, but not all, people would want for themselves.” A genial pro-transplant doctor speaking to Norm Barber off-the-record. For the week starting 15 January 2007 Not our business. "Australians Donate is primarily advocating an increase in donation. We have no role or position on anything to do with the reported issues associated with the matters you raise." Stephen Bendle of Australians Donate, the peak government-funded transplant promotion organisation in Australia. He was replying to the following questions: Do you know if there is a register of Australian citizens going to China for organ transplants? Does Australians Donate have a policy regarding purchasing organs and transplant surgery from China? Are there any statistics on the success rate of transplant organs acquired from China? Is there any way one can determine how many Australian citizens purchase organs from China and elsewhere? For the week starting 8 January 2007 What sort of person goes to China for a transplant? "For other practitioners who were operated on in other hospitals, my ex-husband [a surgeon], didn't know what happened to them afterwards. For the practitioners in our hospital, after their kidneys, liver, etc. and skin were removed, there were only bones and flesh, etc. left. The bodies were thrown into the boiler room at the hospital." Witness "W" Report into allegations of organ harvesting of Falun Gong practitioners in China 6 July 2006 David Matas, Canadian Human Rights Lawyer David Kilgour, former Secretary of State in the Canadian government Download report as a pdf file http://organharvestinvestigation.net http://investigation.go.saveinter.net http://davidkilgour.ca For the week starting 1 January 2007 Organ Transplantation and Procurement - The Ethical Challenges "We simply cannot ignore the fact that the sellers are going to be the poor, predominantly. Most well-off people are not going to sell their organs as a way to buy a third car. The people who are going to sell their organs are going to do it largely, I think, as a kind of act of desperation." Eric Cohen, Director of Bio-ethics at the Ethics and Public Policy Center He was speaking at The President's Council on Bioethics in June, 2006. http://bioethics.gov/transcripts/june06/session3.html For the week starting 25 December 2006 The Hunt is on "It is not unheard of for desperate patients with the means to use roadside bill boards for their appeals." USA confronts looming organ-shortage crisis Todd Zwillich The Lancet 2006; 368:567-568 DOI:10.1016/S0140-6736(06)69180-0 http://www.thelancet.com/journals/lancet/article/PIIS0140673606691800/fulltext For the week starting 18 December 2006 Does donating a kidney mean higher blood pressure later for the living donor? "On the basis of the limited studies conducted to date, kidney donors may have a 5-mm Hg increase in blood pressure within 5 to 10 years after donation over that anticipated with normal aging". from Meta-Analysis: Risk for Hypertension in Living Kidney Donors Neil Boudville, MD; G. V. Ramesh Prasad, MD; Greg Knoll, MD, MSc; Norman Muirhead, MD; Heather Thiessen-Philbrook, MMath; Robert C. Yang, MD; M. Patricia Rosas-Arellano, MD, PhD; Abdulrahman Housawi, MD; Amit X. Garg, MD, PhD, for the Donor Nephrectomy Outcomes Research (DONOR) Network* Annals of Internal Medicine 1 August 2006, Volume 145, Issue 3, Pages 185-196 http://www.annals.org/cgi/content/abstract/145/3/185 For the week starting 11 December 2006 Donation after Cardiac Death "At first sight it looks as if it's describing a welcome return to the old way of taking kidneys from the much more believably dead. But then one finds that they are cannulating and perfusing these potential donors, while continuing CPR, without the relatives' permission - and proposing that the law is changed around the world to permit this sort of thing - to my mind a quite improper abuse of the dying - in the interests of the required organs while they try to get approval for their procurement." David Evans personal communication with the author Dr David W Evans, retired Cardiologist and Fellow Commoner at Queens’ College, Cambridge, United Kingdom For the week starting 4 December 2006 Disease-ridden body parts fears The United States Food and Drug Administration recently shut down human body collector, Donor Referral Services of Raleigh, North Carolina saying donor records did not match death certificates that listed cancer and drug use. The FDA and the Centers for Disease Control and Prevention recommended that doctors offer hepatitis B and C, syphilis and HIV tests to those having received "tissue" harvested by the company. Read the original news report by Andrew Bridges, Associated Press Writer http://news.yahoo.com/s/ap/20060830/ap_on_he_me/body_parts For the week starting 27 November 2006 Observations and Predictions "I suppose we can take heart that these matters are now being a bit more openly discussed…and from the evident desperation in the transplant camp nowadays. Perhaps we have got the absurdities and deviousness of the "brain death" business across in quite a big way. Hence the move to living donors (and the supposedly "cardiac dead"), maybe. And it's just possible that the whole transplant enterprise will be called into question sometime soon. There are just too many anomalies, difficulties, misrepresentations and deceptions associated with it in all its forms - or so it seems to one who accepted kidney transplants without question for many years but now finds scientific or philosophical/ethical problems - which are not faced openly and honestly - even with that. I suppose corneal, heart valve, bone and suchlike transplants may survive ...." David Evans personal communication with the author Dr David W Evans, retired Cardiologist and Fellow Commoner at Queens’ College, Cambridge, United Kingdom For the week starting 20 November 2006 Jumping the gun "We are clearly ad idem in the matter of cannulating and perfusing undeniably still-living people in anticipation of their death - a process akin to embalming before death. Unlike those who see transplantation as a self-evident good, its facilitation imposing upon my profession and the public (and their political masters) an unchallengeable moral imperative, we do not regard the end as justification for means of this inhumane kind. " David Evans personal communication to the author Dr David W Evans, retired Cardiologist and Fellow Commoner at Queens’ College, Cambridge, United Kingdom commenting on the practice of administering chemicals and drugs into prospective Non Heart-Beating Donors. These patients haven't been declared "brain-dead" and the organ removal preparations may harm the patient, an especially difficult situation if the patient doesn’t die upon removal of medical support and is returned to a therapeutic setting. For the week starting 13 November 2006 Let's not rush "The additional test, which saved these two, was the passage of time - one of the most powerful diagnostic weapons available to the doctor, yet one which is almost casually set aside when neurologists are under pressure to provide viable organs for transplantation." Dr David W Evans, retired Cardiologist and Fellow Commoner at Queens’ College, Cambridge, United Kingdom. Private correspondence with the author June 2006. Dr Evans was referring to the study, "On the difficulty of neurosurgical end of life decisions" by C Schaller and M Kessler Department of Neurosurgery, University of Bonn Medical Centre, Bonn, Germany. Two patients expected to die from brain damage later recovered. http://jme.bmjjournals.com/cgi/content/abstract/32/2/65 For the week starting 6 November 2006 Ignoring the obvious "There are other criticisms but, in summary, it is deeply distressing that this Draft Consultation is so autocratic; that it contains so many flaws; that minds are apparently closed to the discussion that has taken place over the last 25 years; that the quite obvious link between the need for invoking brain stem death and the harvesting of viable vital organs from a living body is so strenuously denied." Response by Dr David Hill to the Draft Consultation paper for revising the United Kingdom CODE OF PRACTICE FOR THE DIAGNOSIS AND CERTIFICATION OF DEATH Dr David Hill Emeritus Consultant Anaesthetist The Old Post House Eltisley Huntingdon Cambridgeshire PE19 6TG Read The Draft Paper Read David Hill's full response For the week starting 30 October 2006 Organ Donation as Punishment in China "The people present at the scene of organ harvesting of Falun Gong practitioners, if it does occur, are either perpetrators or victims. There are no bystanders. Because the victims, according to, the allegation are murdered and cremated, there is no body to be found, no autopsy to be conducted. There are no surviving victims to tell what happened to them. Perpetrators are unlikely to confess to what would be, if they occurred, crimes against humanity. Nonetheless, though we did not get full scale confessions, we garnered a surprising number of admissions through investigator phone calls." Mattas, David and Kilgour, David. "Report into Allegations of Organ Harvesting of Falun Gong practitioners in China." http://organharvestinvestigation.net http://investigation.go.saveinter.net http://davidkilgour.ca For the week starting 23 October 2006 Catholic Theology and "Brain Death" Diagnosis "If the soul has really left someone, that is, there is no unifying principle uniting their functioning, then they are dead, and there will be plenty of external signs. Dead people?s bodies do not continue living for years. Zombie bodies ? human bodies roaming without souls ? are as impossible as ghost souls ? human souls roaming without bodies. They are properly the stuff of adolescents? films, not adult medical practice. If a person?s body is alive ? unified and doing those things organisms do ? then that person is alive, however disabled they might be." The Most Rev Anthony Fisher, OP Auxiliary Bishop of Sydney "Theology of the Body and Medical Practice" Published in 'The Rock', PO Box 334, Elsternwick, Victoria 3185, Australia. For the week starting 16 October 2006 On delivering one's beating heart child to the organ harvester Knowing, as I do, that the generation of consciousness is not understood, that the bedside brain stem testing used for the certification of death for transplant purposes lacks the power to exclude all possibility of its return, and that, although paralysed, he might well exhibit the cardiovascular hallmarks of stress during the surgical trauma, I could never have agreed to the use of a child of mine as a "beating heart" organ donor. To have allowed that to happen would, to me, have been the ultimate betrayal of that absolute trust which a child has in his parent. David W Evans, Retired physician 27 Gough Way, Cambridge, CB3 9LN responding to "Potential for organ donation in the United Kingdom: audit of intensive care records" by Barber, Kerri, et al http://bmj.bmjjournals.com/cgi/eletters/332/7550/1124 For the week starting 9 October 2006 Organ Donation Refusal from a different perspective "Contrary to the belief of those who desire to procure more organs, families' refusal to consent to a loved one's being an organ donor is a wise decision given the uncertainty about the brainstem criterion's being used to declare a person dead. Families see a loved whose heart is still beating, who is still warm and pink, and who is not "dead" in the usual sense of the word. Many of these families may recognize that there is a living human being present. Most often, potential donors are not informed that they would not be dead in the usual sense when declared dead according to brainstem criteria. (2) It may come as a surprise, then, to families when they discover that their loved ones' hearts will continue to beat when organ donation surgery begins." Michael Potts, Associate Professor of Philosophy Methodist College, Fayetteville, NC USA 28311-1498 responding to "Potential for organ donation in the United Kingdom: audit of intensive care records" by Barber, Kerri, et al http://bmj.bmjjournals.com/cgi/eletters/332/7550/1124 For the week starting 2 October 2006 Reasons for next of kin organ donation refusal "Patient stated in the past he/she did not want to be a donor 16% Relatives not sure whether patient would have agreed to donation 19% Relatives divided over decision 16% Relatives thought patient had suffered enough 16% Relatives did not want surgery to body 20% Reason not documented 17%" 'Individuals may have given more than one reason. No single reason was given much more commonly than the others. Other reasons for refusal were given by 244 families (26%) and included "the family wanted to be with the patient when the ventilator was turned off," "religious beliefs," and "the family do not agree with organ donation."' Barber, Kerri, et al Potential for organ donation in the United Kingdom: audit of intensive care records British Medical Journal BMJ 2006;332:1124-1127 (13 May) http://bmj.bmjjournals.com/cgi/content/full/332/7550/1124 For the week starting 25 September 2006 Next of kin refusal rate increasing "Over the two years of the study, 41% of the families of potential donors denied consent." "In the early 1990s, the refusal rate for organ transplantation in England and Wales was 30%." Barber, Kerri, et al Potential for organ donation in the United Kingdom: audit of intensive care records British Medical Journal BMJ 2006;332:1124-1127 (13 May) http://bmj.bmjjournals.com/cgi/content/full/332/7550/1124 For the week starting 18 September 2006 "We must accept that nobody has a right to anybody else’s organs. If something untoward happens, our organs may be of value to someone else but that should be the result of an altruistic decision about how we want our bodies to be used when we die. It should not be as a result of a right of the recipient... It is the responsibility of the living whose organs may be of use to someone else; it is not anyone else’s job to claim the organs." Bell, M D D. The UK Human Tissue Act and Consent: Surrendering a fundamental right to transplantation needs. Downloaded from the Journal of Medical Ethics www.jmedethics.com For the week starting 11 September 2006 "The only ethically and professionally defensible recruitment strategy for cadaveric donation, in line with the principles deployed in other fields of health care, is to rely on informed and highly specific consent." Bell, M D D. The UK Human Tissue Act and Consent: Surrendering a fundamental right to transplantation needs. Downloaded from the Journal of Medical Ethics www.jmedethics.com For the week starting 4 September 2006 The Romeo Error? "Although controversial, there has been speculation that a phenomenon know as autoresuscitation may exist (spontaneous, transient resumption of cardiac function following cardiopulmonary arrest." from "Donation after Cardiocirculatory Death: A Canadian Forum" www.ccdt.ca For the week starting 28 August 2006 "As a clinician practising in intensive care for over 20 years, I have only identified one occasion where a family member overrode an expression of interest via card carrying, namely a father for a son. His argument for refusing the request was that he could not he sure that his son would not have changed his mind about organ donation if he had been aware of the differences ot opinion within the medical profession as to the true status of brain stem death that had recently surfaced in the lay press. " Bell, M D D. The UK Human Tissue Act and Consent: Surrendering a fundamental right to transplantation needs. Downloaded from the Journal of Medical Ethics www.jmedethics.com For the week starting 21 August 2006 Is United Kingdom ready for presumed consent? "It is noteworthy that less than 20% of the population are on the donor register, a system again characterised by extremely limited information on the process of organ retrieval. The current relatives’ refusal rate of up to 58%’ also provides a more objective marker that there can be no presumption of consent on majority grounds." English V., Sommerville. A. Presumed consent for transplantation: a dead issue after Alder Hey? J Med Ethics 2003;29:147—52. For the week starting 14 August 2006 "The Wisconsin experience would suggest that about 10% of potential DCD (non heart beating organ) donors were returned to the unit or hospital floor for palliative care." from "Donation after Cardiocirculatory Death: A Canadian Forum" www.ccdt.ca Most organs are removed from legally deceased "brain dead" donors whose hearts continue beating during the early stages of harvesting. The DCD donors are not legally dead and doctors begin preserving their organs with blood thinners and clot reducers while they're still alive. Then they turn off life support therapy, hoping they'll die thus allowing legal organ removal. About 10% don't die and are returned for recuperative treatment though increasingly ill due to organs full of organ harvest chemicals. For the week starting 7 August 2006 Canada flirting with "Donation after Cardiocirculatory Death (DCD)" "Is the DCD [non heart beating organ donor] patient ever conscious just before WLST [withdrawal of life support] and does death ever occur within minutes?" Dr Sam D Shemie and the Canadian Council for Donation and Transplantation won't answer this question, either. (They're promoting non heart beating organ donation for Canada.) Theoretically, this type of organ donor might be conscious minutes before life support therapy is removed, causing him to quickly experience the desired fatal heart attack. Livers from these types of organ donors must be removed in about thirty minutes. Theoretically a patient could be talking one hour then sixty minutes later his organs might be flying down hospital corridors to awaiting transplant patients. Transplant promoters avoid free ranging interviews in case questions like this arise. www.ccdt.ca For the week starting 31 July 2006 Bad news, the patient didn't die "Wouldn’t the DCD [Non Heart Beating Organ Donor] donor be disadvantaged if life-support was withdrawn then death didn't occur and life-support was restarted and the patient's organs and blood vessels were filled with thrombolytic agents and vasodilators?" Dr Sam D Shemie and the Canadian Council for Donation and Transplantation won't answer this. They're promoting Donation after Cardiocirculatory Death (Non Heart Beating Organ Donation) for Canada. In this form of donation organs are prepared for harvesting while the patient is still alive, not even "brain dead". Life-support therapy is then withdrawn with the expectation of a fatal heart attack within two hours. The problem is some patients don't die and are wheeled back into Intensive Care, or palliative care, for continuing recuperative hospital treatment though now increasingly injured from the organ harvesting agents. www.ccdt.ca For the week starting 24 July 2006 What's in a word? "Retrieval" is the word used by transplant promoters to describe excising organs for transplant. It replaces the previously used word: "harvest". "Retrieval" is suggestive of losing one's wallet at a railway station then collecting it from Lost and Found, that is, collecting something already owned by oneself. But neither transplant surgeons nor recipients own a dying person's organs. The dying person is giving the organs. It is a gift. For the week starting 17 July 2006 Do the two sentences below contradict each other? "If patients/families decline the opportunity to donate, their decision should be fully supported. Healthcare team members who do not support organ donation should seek the involvement of an alternative colleague in appropriate circumstances." From "Donation after Cardiocirculatory Death: A Canadian Forum." www.ccdt.ca For the week starting 10 July 2006 "It is incorrect and misleading to say that for a patient in a coma “respiration and circulation can be artificially maintained”. The need is for mechanical ventilation. Respiration (the exchange of gases) continues normally, as does the spontaneous and unassisted heart beat and circulation." from Dr David Hill's response to the Draft for Consultation revision of the 1998 Code of Practice for the Diagnosis and Certification of Death in the United Kingdom. Read the Draft for Consultation Read his full letter below The Old Post House Eltisley Huntingdon Cambridgeshire PE19 6TG E-mail: david.hill@loveall.freeserve.co.uk Dr Peter Simpson President The Royal College of Anaesthetists 48-49 Russell Square LONDON WC1B 4JY 10th June 2006 Dear Peter, Working Party on Brainstem Death It was naďve, I suppose, to think that the Working Party would come up with anything other than this justification of the status quo. It is astonishing, however, that there should be not even a nod towards the substantial body of reputable international opinion questioning the ethics and science of our present methods of certifying death for transplant purposes. A considerable body of such evidence and opinion, peer reviewed and extensively referenced, was presented through you to the Working Party, none of whom apparently regarded it as of significance. This revision, to be presented to the Academy of Medical Royal Colleges and the Department of Health (who are mainly non-medical) and marked “Draft for Consultation”, omits all reference to contrary views. If no discussion is to be allowed in the consultation process, it is hard to see how they, let alone the public who are most affected, can be expected to make a valid judgement. The Working Party’s concern under section 1, p.7 that “Relatives, partners and carers of the patient should be given explanation of the investigations undertaken AND OF THEIR INTERPRETATION” (my emphasis) does not seem to extend to raising any contrary views. I suggest that no reputable refereed journal would accept such a totally biased and inadequately referenced “consultation document” as this. The “wider professional and lay interests” (p.6) do not apparently include any of the doctors, nurses, philosophers or ethicists who question or doubt the validity of the procedures. It is frankly misleading to claim that they “have drawn upon much of the comment received over the existing guidelines”, when contrary views from responsible quarters are suppressed. The Working Group attempts “to completely separate the diagnosis and certification of death from anything to do with the issues surrounding organ donation and transplantation” (para. 1, p.6). If this were true, there would be no need to alter the original 1976 recommendations which provided for conditions when the ventilator could be turned off and the patient be allowed to die. All the subsequent changes are devised to declare death BEFORE the ventilator is removed, in order to obtain viable organs for transplantation. It was the perceived need for organs for transplantation that motivated the original Conference of Medical Royal Colleges and their Faculties in the United Kingdom report of 1976 to be changed. The 1976 report stated the conditions under which the ventilator could be turned off in the secure knowledge that the patient WOULD NOT RECOVER, NOT that the patient was already dead. All the subsequent changes, including those of this Working Party, are required ONLY in order to obtain viable organs for transplantation. The 1979 Memorandum changed the 1976 paper by saying that, the same clinical tests that determined a fatal prognosis, could be used to pronounce that death had already occurred, because by then ALL (my emphasis) functions of the brain had permanently ceased. “Brain death” was later modified to “brainstem death” on the basis of Pallis’s idiosyncratic assertion that the essence of human life is contained in a few cubic centimetres of tissue in the brain stem, even though it is known that residual activity in the higher brain may persist and many, if not all, integrated physiological functions continue. Pallis himself wrote that whole brain death in that sense is a fiction. It is deeply disturbing that the Working Party propose to retain Pallis’s definition of death – “the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe” – a utilitarian ex cathedra pronouncement without scientific or philosophical justification. Further obscure and manipulative definitions of death occur in the Draft Consultation Section 2, Appendix 6 referring to “patients certified dead by neurological testing of brain stem reflexes” and in appendix 9 the term “brainstem death(d)” is replaced by “death(d) following cessation of brain stem function”. This is hardly conducive to a clear understanding of “death” or necessary, if as claimed in the Working Party draft, there is no eye on obtaining viable organs for transplantation. Paragraph 1 of the Introduction claims that use of the brain stem tests can make us “confident about the professional and legal acceptability of discontinuing interventions that merely serve to prolong somatic function”. However, when organs are to be taken, interventions ARE continued merely serving to prolong somatic function. In Paragraph 2, the obsession with brain stem death leads to the statement that, following cardio-respiratory death, “The doctor has to be certain that there has been irreversible damage to the vital centres in the brain stem”. The implication is that in all cases of cardio-respiratory death (the vast majority of deaths) the brain stem tests must be carried out before certifying death. This is clearly nonsense. Paragraph 3, p.9 continues the clumsy attempt to link cardio-respiratory death with brainstem activity by implying that the historic time-honoured ways of recognising cardio-respiratory death are somehow deficient and that brainstem tests would be better. The Working Party’s attempt to separate the certifying of death and organ harvesting is contrived and does not work. It is significant that the two references (7 & 8 in Paragraph 3, p.9) giving advice to wait 5 minutes after cardio-pulmonary arrest before certifying death are both SPECIFICALLY CONCERNED with obtaining viable organs from patients referred to as “controlled” non-heart-beating donors. If organs were not sought, no time limit would be needed or, if it were, it could be a great deal longer than 5 minutes. The statement in Paragraph 3, p.8 that death is a process rather than an event is not supportable. It is, of course, DYING that is the process and DEATH that is the event, or better, the STATE described in the document when death can be certified. It is intellectually interesting to consider what is the exact point at which death occurs, but this is of no practical importance where organ harvesting is not concerned. As a houseman, the call at night by nurses to certify a death was the one occasion when time was not of the essence. Paragraph 4 on p.10 contains a number of very questionable statements. It is regularly observed that, unless suppressed by anaesthesia, surgery for organ harvesting in those declared brainstem dead stimulates severe hypertension and tachycardia. The claim that this is not mediated through the medulla is an assumption without evidence and is contrary to the usual principle that primary mechanisms are invoked unless proved otherwise. The similarity of response to that of any other intact patients would indicate medullary control. The constantly repeated statement that the heart will inevitably stop beating “shortly” or “within a short period” (paragraph 6, p. 13) is at odds even with the document’s statement in paragraph 6.4 on p.17 that heartbeat may continue for a few weeks. It is incorrect and misleading to say that for a patient in a coma “respiration and circulation can be artificially maintained”. The need is for mechanical ventilation. Respiration (the exchange of gases) continues normally, as does the spontaneous and unassisted heart beat and circulation. “The appropriate course of action is then to withdraw mechanical respiratory support” (and one might add “and allow the patient to die”) is correct, but at odds with the practice when organs are sought and such life support is then continued. The ends then are used to justify the means and imposing “a pointless and distressing vigil” on family and friends is apparently justified. Paragraph 6 is extraordinarily paternalistic and unscientific in simply dismissing without any evidence or discussion as “irrelevant” residual brain stem and higher brain activity, the spontaneous and responsive movements, the retention of normal physiological activity and the lack of the usual signs of death. Irrelevant to whom? one might ask. To the Working Party perhaps but not perhaps to the reported 40-50% of relatives who refuse consent for organ harvesting but nevertheless agree to life support being discontinued and the relative be allowed to die. I have not included references to these comments as they are contained in the previous papers sent to you and the Working Party members. CONCLUSION There are other criticisms but, in summary, it is deeply distressing that this Draft Consultation is so autocratic; that it contains so many flaws; that minds are apparently closed to the discussion that has taken place over the last 25 years; that the quite obvious link between the need for invoking brain stem death and the harvesting of viable vital organs from a living body is so strenuously denied. All is not necessarily lost if it can be agreed that, as the evidence indicates and recent papers have proposed, the brain stem tests are adequate to establish the prognosis of an inevitable death, which was their original purpose in 1976. Then the alternatives are for relatives to give permission to discontinue life support and allow the patient to die; or to give permission for a controlled withdrawal of life support and (with fully informed consent and guaranteed anaesthesia) the harvesting of organs. If this were agreed, one could either (with further informed consent) wait for cardio-pulmonary death or proceed with surgery in the knowledge that this will finally terminate the patient’s life. This would probably require further legislation and would raise further questions but would have the virtues of clarity and honesty. I regard this as an open rather than a personal letter, and am copying it initially to each of the members of the Working Party and to other concerned colleagues and friends. With kind regards, Yours sincerely, Dr David J Hill For the week starting 1 July 2006 '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.' Dr David Hill and Dr David W Evans in their contribution to the revision of the 1998 Code of Practice for the Diagnosis and Certification of Death in the United Kingdom. Read the Draft for Consultation to which Evans and Hill contributed: html file Read their contribution below: 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 rôle - 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. |
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