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Rapid Responses to:
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Alvaro Sanz, Medical Oncologist Hospital Universitario del Rio Hortega. 47010 Valladolid. Spain, María L. del Valle
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We do not share the point of view of the authors. Palliative care implementation and euthanasia debate are coincident on time. But this coincidence only made evident that growing social concern on end-of-life and sufferance may elicit different and even opposed conclusions. We can not support the opinion of an interactive and mutually encouraging development for palliative care and euthanasia. We do not see the proposed analysis of Bernheim et al. as neutral because the authors are engaged in an Institution as the Vrije Universiteit Brussel that, even with their own palliative care department (something not excessively relevant in a country where every Hospital had to have a palliative care team), seem to be involved in the legalisation of euthanasia and in ensuring links between palliative care and euthanasia. The present analysis reinforce the view of euthanasia supporters as really interested in giving a formal appearance of respect, cooperation, and involvement in palliative care works as if they know that any apparent opposition could be detrimental. However, most palliative care workers and Institutions formally dislike even the image of synergy with euthanasia (1,2); they try to separate these two concepts as two different and even opposed views of end-of-life. And even knowing that fully development of palliative care will not reduce to zero the requests of euthanasia, they do not accept induced-death as an objective or an instrument of palliative care (3). (1) Materstvedt LJ, Clark D, Ellershaw J, Førde R, Boeck Gravgaard AM, Müller-Busch HC, et al. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force. Palliat Med 2003;17:97-101. (2) Altisent Trota R, Porta Sales J, Rodeles del Pozo R, Gisbert Aguilar A, Loncan Vidal P, Muños Sánchez D, et al. Statement about the euthanasia of the Spanish Society of Palliative Care. Med Pal 2002;9:37-40. (3) Sanz A, del Valle ML, Hernansanz S, Gutiérrez C, García Recio C, Flores LA. Eutanasia and palliative care: not a good couple. Med Pal 2007;14:146-7. Competing interests: None declared |
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Lesley A M Evans, Retired Geriatrician, Taunton and Somerset Hospitals Home TA24 8HD
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I disagree entirely with the above reaction to what I felt was an excellent article by Jan Bernheim and colleagues. It was really refreshing to hear of a country where good palliative care and legalised euthanasia are working together, not in opposition. Both are aimed at a compassionate and patient-led approach to dying, and are not in any way mutually exclusive. It was also good to see evidence that the "slippery slope" argument proved to be a myth which is not born out in practice. We surely cannot claim to be a compassionate society if we do not allow patients to have autonomy over the manner of their dying. Even with the best palliative care - sadly available to only a few, even now - many people still suffer greatly in their final days, weeks and months. How can anyone think that this is acceptable in a civilised society? We will all die, so this affects us all and it behoves us to get it right. After all, you only get one chance to do so. Sadly, too often the dying are condemned to die in great misery just because of our scruples. Their lives are their own, and do not belong to the medical or nursing staff, the church, or anyone else. People should have the right to choose the manner of their going. I am a committed Christian, and I do not accept that the God of love in whom I believe can possibly condone the sort of terminal suffering I have sometimes (and in fact very recently) seen. We have been given intelligence and knowledge, and we should use them for the prevention of suffering in all ways possible. This is our duty of care to our fellow human beings, who may also happen to be our patients. Yours sincerely, Lesley A M Evans Competing interests: I was a Consultant Geriatrician with a particular interest in Palliative Care for non-malignant conditions. I have also worked in Hospices. I am now a member of Dignity in Dying.I am retired. |
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Dr Nicholas Herodotou, Locum consultant Palliative Medicine Worcestershire PCT
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I find it amusing to read this article-albeit a contradictory one at that, to
assume
that palliative care and the practice of euthanasia marry well together. Can
light
and darkness co-exist at the same time? The foundation stone which we lay
determines the strength of the building. In this case, the authors foundation
is
one of humanism. As a result, the spiritual dimension is removed and so are
the
future consequences of ones actions. Euthanasia is NOT palliative care as it
does
not involve love, care, patience, clinical skill or humaneness. What it espouses
is
the false belief of self-determination at all costs and the moral/social and
spiritual damage it does to society as a whole (The Dutch Remmelink Report*
is a great counter argument for legalised euthanasia as it identified over one
thousand patients who received involuntary euthanasia).
I for one loathe seeing my patients suffer towards the end of life, but that does not prompt me to solve the problem by wanting to facilitate the termination of their life. On the contrary, it spurns me on to realise that we continue to live in a world of pain, suffering and uncertainty, and seeking to offer my dying patients hope when there seems to be none. Anyone can be an executioner with a bit of training. The economic benefits for euthanasia are obvious to society-maybe this is the hidden agenda of the pro-euthanasia lobby? But, not everyone can love the sick and dying because its very costly, both emotionally, spiritually and demands our time. Can euthanasia and palliative care co-exist? I think not. *www.geocities.com/friends_at_the_end/remmelink3report19chapter.html Competing interests: None declared |
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Hector R. Diaz, UCI Professor University Hospital of Sagua la Grande. CP 52310 Villa Clara. Cuba
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I disagree with the statement declared in the article published. Euthanasia and palliative care are the opposite faces of the same card. The first solves the problem of dying patients by facilitating death, the second is intended for seeking a better and worthy death without suffering by using available tools and drugs. Of course the decision must be taken by the patient or their relatives and the way of the end of life must be the best. On the other hand, another position is the encarnisation of live using all sorts of media to keep patients alive by all means without scruples. In my opinion it is as harmful as euthanasia. It is the third face of the card. Competing interests: None declared |
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John C Chambers, Macmillan Consultant and Medical Director Katharine House Hospice, East End, Adderbury, Oxon, OX17 3NL
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Bernheim et al state that data from the Netherlands, where euthanasia is legal, do not provide evidence of a slippery slope. (1) The following comes directly from a paper published in the BMJ in 2005: “Were physician-assisted suicide legalised, doctors would have the new duty of therapeutic killing… The inevitable accommodation of this shift in the status of assisted suicide and therapeutic killing is seen clearly in the Netherlands. Therapeutic killing is now extended to children, people with psychiatric illness, and those who are mentally incapable. Therapeutic killing without consent has become laudable and morally necessary. The Netherlands now plans a committee to decide on such cases nationally... Dutch legislation has failed to improve reporting beyond 54% of all cases or to limit therapeutic killing without consent, which consistently accounts for about 1 in 7 of reported cases. Experience is similar in Belgium… In the first Dutch report in 1990, only one case was cited of a dying patient who was killed to free the bed, whereas in the latest survey, 15% of doctors were concerned about economic pressures. The nursing literature records similar experience”. (2) Every claim made in the above quote is referenced and evidence-based. I for one believe that it provides evidence of a slippery slope. Furthermore, in Oregon, one-in-three requests for assisted death are made because the patient “feels a burden”. Is assisted-death really the cure for someone feeling that they are a burden? 1 Bernheim JL,Deschepper R, Distelmans W, Mullie A, Bilsen J, Deliens L. Development of palliative care and legalisation of euthanasia: antagonism or synergy? BMJ 2008;336:864-867 2 George RJD, Finlay IG, Jeffrey D. Legalised euthanasia will violate the rights of vulnerable patients. BMJ 2005;331:684-685 Competing interests: None declared |
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Carlos Centeno, consultant in Palliative Medicine University of Navarra Clinic, 31007-Pamplona
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Bernheim et al(1) maintain that the passing of the Belgian law on euthanasia could be a consequence of the highly developed state of palliative care practice in that country. One must acknowledge that Belgian palliative medicine has experienced in the past years a vigorous expansion. But the same has been also occurring in other Western European countries as is the case with the UK, Ireland, France, Iceland, Sweden or Spain. In none of these countries a law on euthanasia has been enacted, although in all of them indicators of palliative care are at least as good as those in Belgium (2). Among the evidences for the high quality reached by palliative care in Belgium, the authors adduce that Belgium had by far the highest per capita participation in Conferences of the European Association of Palliative Care held in the last years (2001, 2003, and 2005). That’s not exact: the mean number (168) of Belgian palliativists attending at those meetings is behind that of British (224) and German (185) representatives, and precedes closely that (160) of their Dutch neighbours (2). Bernheim et al emphasise that such high attendance took place despite the fact that none of those meetings was held in Belgium, but they omit mentioning that two of them convened in The Hague and Aachen, at 180 and 145 Km from Brussels respectively. In different countries, the passing of a law on euthanasia depends upon a number of complex issues (political, social, cultural or religious), not alluded to by Bernheim et al (1). The suspicion that a permissive euthanasia law could be a consequence of the competent practice of palliative care constitutes a respectable but unproven hypothesis, obviously not substantiated by the authors in their article. Moreover, such assumption finds no support in an unbiased scrutiny of the available data on the development of palliative care from more than 50 European countries(2). (1) Bernheim JL, Deschepper R, Distelmans W, Mullie A, Bilsen J, Deliens L. Development of palliative care and legalisation of euthanasia: antagonism or synergy? 2008;336;864-867 (2) Centeno C, Clark D, Lynch T, Rocafort J, Praill D, De Lima L, Greenwood A, Flores LA, Brasch S and Giordano A. Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC task force. Palliat Med 2007; 21; 463-71. Competing interests: None declared |
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Donald C Aston, retired Solihull B90 2BG
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Dr Chambers quotes from a paper published in the BMJ in 2005 but its 3 authors are like him palliative consultants who share his strong opposition to any form of assisted dying. But at least they do go on to assert ` educational programmes etc consistently find GPs and hospital consultants are poor at controlling symptoms and relieving suffering and many still believe that opioids and sedatives hasten death. It is unsurprising, then, that many clinicians have seen suffering patients who they have been unable to help. Many doctors assume that they already kill frequently when they do nothing of the sort. ` ( 1 ) The modern hospice movement has now been in existence for forty years surely long enough for the issue to be resolved one way or the other. But dying patients, very few of whom will die in a hospice, continue to be trapped between lack of access to an assisted death if that is their wish and non-hospice doctors and nurses who so often refuse to prescribe adequate opioid analgesia and sedation. 1 George RJD, Finlay IG, Jeffrey D Legalised euthanasia will violate the rights of vulnerable patients. BMJ 2005;331: 684-685 Competing interests: None declared |
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Isabel G Neto, PC Doctor; Hospital da Luz, Lisboa, President of the Portuguese PC Association Lisbon - 2700-808
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I do not agree with the conclusions of the article, which is interesting but, in my opinion, doesn´t fully prove what the authors intended to say. The ethical and clinical reasons that could sustain this "marriage" were not fully explored and discussed, the evidence that Belgium has one of the best palliative care systems was not consistently shown, and the evidence of the advantages of this parallel intervention for doctors and patients (in the same team??? in the same hospital??) were not shown. It seems to me that this was an attempt to force some conjunction which in its central core is very difficult to justify. I think we run the risk of looking at this issues in a "light" way. Whatever our opinion on good end of life care and dignity of oneself, we must accept that is fundamental, in this debate, to follow good evidenced based data and good ethical and clinical thinking. Competing interests: None declared |
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Jane Gibbins, Research Fellow and SpR Pallaitive Medicine Department of Palliative Medicine, Bristol Haematology & Oncology Centre, Bristol, BS2 8ED, Carolyn Campbell, SpR Pallaitive Medicine
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Dear Editor We are writing in response to the article by Bernheim et al. (1) The authors suggest that palliative care and euthanasia are not ‘antagonistic’ but in fact compatible and 'if Belgium’s experience applies elsewhere . . . .palliative care need not oppose the legalisation of euthanasia'. However, their model ‘grew up side by side’ and is unlikely to be transferable to the UK. The Association for Palliative Medicine in the UK surveyed its members (doctors who work in hospices and specialist palliative care) in 2007 to ask if “they believed that with improvements in palliative care, good clinical care can be provided within existing legislation and that patients can die with dignity” – 94 % agreed. (2) Furthermore, when asked whether, if legislation allowed, would they personally be prepared to participate actively in a process to enable a patient to terminate his or her life, only 3% were prepared to do so. Thus, UK palliative care doctors who are likely to be seeing some patients with extreme distress, view euthanasia very differently to those working in Belguim. Whilst Bernheim et al found “indicators of reciprocity” in the development of palliative care and the legalisation of euthanasia in Belgium, these results suggest that doctors working in palliative care within the UK are unlikely to work “synergistically” with those potentially practising euthanasia. The authors argue that legalising euthanasia does not impede the development of palliative care, yet a recent publication in the BMJ about terminal sedation at the end of life in the Netherlands revealed that only 9% of these patients were reviewed by a palliative care team.(3) Although palliative care services may be ‘developed’ in countries that have legalised euthanasia, this study suggests they are not being appropriately used. Lastly, the history of palliative care in the UK is different from that in Belgium. The hospice movement originated outside the National Health Service and many parts of the service are funded by charitable donations. The effect of euthanasia and palliative care being ‘developed’ together could be detrimental to patient care; would donations be given to institutions that actively terminate lives of patients? Whilst we hope this article will increase societal debate and increase the provision for palliative care in the UK to improve end of life care for patients, the Belgian model is unlikely to be a transferable to the UK. 1. Bernheim JL, Deschepper R, Distelmans W, Mullie A, Bilsen J, Deliens L. Development of palliative care and legalisation of euthanasia: antagonism or synergy? British Medical Journal 2008; 336: 864-867 2.www.apm.co.uk (accessed 19.04.08) 3. Rieriens J, van Delden J, Onwuteaka-Philipsen B, Buiting H, van der Maas P, van der Heide A. Continuous deep sedation for patients nearing death in the Netherlands: a descriptive study. British Medical Journal 2008; 336: 810-813 Competing interests: None declared |
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Isky Gordon, professor paediatric imaging UCL, Institute of CHild Health, Guilford Street, London WC1N1EH
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Legalizing end-of –life decisions reduces the number who chose this. This is one of the most interesting facts quoted in the paper by Bernheim: “The overall incidence of end of life decisions did not change between 1998 (39.3%) and 2001 (38.4%), but the incidence of voluntary euthanasia substantially decreased (from 1.1% to 0.3%) as did the administering of drugs with the explicit intention to shorten survival without the patient’s explicit request (from 3.2% to 1.5%), and symptom control with a life shortening effect (from 5.3% to 2.8%).” (1) Clearly the opportunity to include choice at the end of life as part and parcel of the armamentarium of the palliative care physician appears to have given the terminally ill patient and their family the courage and strength to face the end of life rather than fear the process of dying. Further it strongly suggests that this has strengthened the relationship between the palliative care team and the patient/family. The argument of the slippery slop has little solid evidence. Previously published data showed that in the elderly there was no evidence of heightened risk. In Oregon, 10% of patients who died by patient assisted suicide were 85 or older, whereas 21% of all Oregon deaths were among persons in this age category. In the Netherlands, rates of assisted dying were lowest in the people over 80 (0.8% in 2005), next lowest in the age range 65–74 years (2.1%). (2|) There was no evidence of a heightened risk in Oregon and/ or Holland for other important groups as the poor, racial and ethical minorities and people with non-terminal physical disabilities.(3) 1. Bernheim JL, Deschepper R, Distelmans W, Mullie A, Bilsen J, and Deliens L. Development of palliative care and legalisation of euthanasia: antagonism or synergy? BMJ 2008; 336: 864-867 2. Jansen-van der Weide MC, Onwuteaka-Philipsen BD, van der Wal G. Granted, undecided, withdrawn, and refused requests for euthanasia and physician assisted suicide. Arch Intern Med 2005;165:1698–704. 3. Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka- Philipsen D. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘‘vulnerable’’ groups J Med Ethics 2007;33:591–597. Competing interests: None declared |
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Marta Munzarova, Prof. emeritus - Masaryk University, Brno Tomesova 12, Brno, CZ - 60200
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Sir, It is almost incredible, that the authors [as well as many others] proclaim that "...data from the Netherlands and Belgium...do not provide any evidence of a slippery slope". It is evident to all but the willfully blind that this slope is not a matter of percentages and their comparison but a matter of thinking. Even in this very article the authors mention "the administering of drugs with the explicit intention to shorten survival without the patient' s explicit request". They announce this horrible fact without shame and without any bad feeling and morover without any risk of punishment. The same can be seen in all Dutch publications in this field. Involuntary killing of incompetent is even supported by the advice of The Netherlands Ministry of Foreign Affairs [DVL/VB, Act 2001]: "The termination of the life of a patient whose suffering was primarily psychological or whose ability to express a well- considered request might have been impaired by, for example, depression or the onset of dementia should be notified in accordance with the procedure for termination of life without the explicit request of the patient. This also applies if the patient was a minor." [We can be quiet - according to definition this form of killing is not euthanasia. Another form of notification solves this problem!] "Palliative care and euthanasia are...not antagonistic.." Unbelievable! Let us compare these two attitudes. Palliative care provides relief from pain and other symptoms by compassionate care, taking into account all dimensions of man, affirms life, regards dying as a normal process, intends neither to hasten nor postpone death, offers every possible measure of physical, social, emotional and spiritual comfort to the dying, supports their families..etc. Euthanasist provides relief from pain and other symptoms by killing the patient, does not affirm life, does not respect the process of dying - kills often a very long time before beginning of this state, hastens death, etc., etc. It is necessary to put it clearly: "The term integral palliative care, in which euthanasia is considered as another options" or "Euthanasia may..be part of paliative care" are illogical and contradictory statements [as well as many others in the discussed text].True paliative worker cannot be involved in such a strange and destructive "joint development". He knows that palliative care is never futile and that it is the only truly human and truly dignified possibility how to help the dying. Dame Cicely Saunders was responsible for establishing the discipline and the culture of palliative and hospic care, more than anybody else. Her movement is a great gift for all - not only for the dying. She devoted all her life to this idea and felt strongly that palliative care should never include assisted suicide or voluntary euthanasia. The ideas presented in the text of Bernheim et al. prove the absence of decency toward this great personality and her heritage ["..palliative care and legalised euthanasia are both based on the medical and ethical values of patient autonomy and caregiver beneficience and non- maleficience"].Killing is detrimental not only to the patient but to caregiver himself. Soon he will get accustomed to killing and then he will kill with clear conscience - including the incompetent. The way to crimes against humanity is always prepared by peculiar ways of thinking about humanity. Prohibition of intentional killing should be the cornestone of law and of social relationship. Everybody must be absolutely sure, that his physician will not be his executioner. I hope that is not too late. Yours sincerely Marta Munzarova. Competing interests: Physician-internal medicine and oncology; 1992-2006 Head of the Institute of Medical Ethics |
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David J Evans, emeritus Professor,Imperial College Retired
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Before I became a medical student almost 50 years ago continuous deep sedation had long been used by doctors with a compassionate attitude towards sufferers from terminal disease. Philosophically it would seem to differ little from euthanasia, but raising it as an issue in this country seems simply to invite its prohibition. There seems to be no point in a debate on a subject which will simply indicate the polarisation between Roman Catholics and fundamentalist Christians on the one hand and humanists on the other. Unfortunately this latter group seems incapable of organised action. I do not mind the former groups making rules for the members of their own sects but deeply resent attempts to enforce their own views on the rest of us. It is high time that religious affiliations were declared by authors making statements on ethical issues. David J Evans
Competing interests: None declared |
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jr hunter, GP BT655BE
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I feel that all human life as I have known it on planet earth for the past fifty odd years is sacred and unique and that infanticide, abortion and euthanasia is unacceptable as a G.P. having taken the hippocratic oath my medical vocation is to sustain and strife to maintain human life and provide humane care and relief of suffering to all regardless of creed, age sex , social class etc DRRH Competing interests: None declared |
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Jan L Bernheim, Oncologist, Emertus Prof., Vrije Universiteit Brussel B1090, Brussels, Belgium, Arsène Mullie, palliative care specialist, President of the Flemish Palliative Care Federation
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Rather ‘ad hominem’, Sanz and del Valle write: “…euthanasia supporters …(are in fact)… interested in giving a formal appearance of respect, cooperation, and involvement in palliative care works as if they know that any apparent opposition could be detrimental.” This accusation of fake commitment to palliative care is unfounded. The careers of several of the pioneers of integral palliative care and the historical record in Belgium make clear that their commitment to palliative care was early, genuine and persistent, and there was nothing occult about the drive for legal euthanasia. There have been no such accusations in Belgium. This may be because in this pluralistic society the palliative care workers opposed to euthanasia and those accepting it knew and respected each other and each other’s ethical stances. Also in Belgium many citizens, health workers and indeed palliativists were and remain adverse to euthanasia. However, the Belgian experience shows it is one (honourable) thing to as an individual or a group want no part of euthanasia and quite another to deny others the right to hold and practice different principles that are also compatible with the Universal Declaration of Human Rights. Competing interests: Jan Bernheim is a secular humanist physician and co-founded the first PC organisation in Belgium. Senne Mullie is a christian physician, the current president of the Flemish Palliative Care Federation |
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Michael O'Donnell, Former GP. Journeyman writeer Loxhill GU8 4BD
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I'm collecting data on the swearing of Hippocratic oaths in the UK. I would be grateful if Dr Hunter could tell me in what sort of ceremony did he swear to uphold the oath, which version of the oath was used, and who wrote it? I would also be happy to hear from any other doctors who've taken part in Hippocratic oath swearing ceremonies in the UK Michael O'Donnell mod@doctors.org.uk Competing interests: None declared |
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Jan L Bernheim, Oncologist, Prof. Em. Vrije Universiteit Brussel B1090 Brussels, Belgium, Arsène Mullie, palliative care specialist, president of the Flemish Palliative Care Federation, B8000, Brugge, Belgium
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Economou is in factual error on both accounts. There are probably no economic benefits to euthanasia at all, since in the vast majority of cases the estimated life shortening is only a few days (1) and its performance mobilizes substantial human resources. From experience, we would predict that on the contrary, –all else being similar - patients who are assured they will receive euthanasia upon valid request, and eventually get it, live longer than those who do not request it. As for ‘involuntary euthanasia’ (which should more properly to be called ending of life without explicit request, and indeed may appear to be an alarming practice), the consecutive Dutch and Belgian death- certificate studies have established that a) it is almost always carried out in dying patients who have become incompetent (1, 2), and b) its frequency has decreased as euthanasia became legal (3), thus more and more approaching the estimated 0.33 % frequency of this practice in the UK (4). Also Economou’s contrasting of light, spirituality, love, care, patience, clinical skill and humaneness with darkness, humanism, excessive self-determination and executorship is contrary to contemporary scholarship (5, 6). 1 Deliens L, Mortier F, Bilsen J, Cosyns M, Vander Stichele RH, Vanoverloop J et al. End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey. Lancet 2000; 356(9244):1806-1811. 2 Rietjens J, Bilsen J, Fischer S, van der Heide A, van der Maas P, Miccinessi G, Norup M, Onwuteaka-Philipsen B, Vrakking A, van der Wal G. Using drugs to end life without an explicit request of the patient. Death Studies 2007;31(3):205-221. 3 Bilsen J, Vander Stichele R, Broeckaert B, Mortier F, Deliens L. Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium. Soc Sci Med. 2007 Aug;65(4):803-8. 4 Seale C. National survey of end-of-life decisions made by UK medical practitioners. Palliat Med 2006; 20: 3-10. 5 Engelhardt H.T. Bioethics and Secular Humanism. Trinity Press, 1991 6 Hurst SA, Mauron A. The ethics of palliative care and euthanasia: exploring common values. Palliat Med 2006;20:107-12. Competing interests: Jan Bernheim is a secular humanist physician and co-founded the first PC organisation in Belgium. Senne Mullie is a christian physician, the current president of the Flemish Palliative Care Federation |
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Jan L Bernheim, Oncologist, Prof. Em. Vrije Universiteit Brussel B1090, Brussels, Belgium, Arsène Mullie, palliative care specialist, B8000 Brugge, Belgium
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In reply to Diaz's The third face of the card Diaz raises the spectre of medical futility, the prevention of which is among the principal goals of both conventional and integral palliative care. By requesting euthanasia after a pathway of good palliative care, some patients tell us there is also such a thing as palliative futility. We think relatives should not take end of life decisions, which more properly should result from a negotiation between the doctor and the patient, albeit preferably also in a dialogue with the relatives and other caretakers. In reply to Chalmers' No slippery slope? In the Netherlands and Belgium, by legal definition, euthanasia is always upon a valid request, and –as every medical act- never a duty but a legal option. Several of the legitimate concerns that Chalmers and George et al. voice have been adequately assuaged by robust epidemiological data (1-4). Most requests for physician-assisted death result from mental rather than physical suffering, and being a burden is intolerably painful for some patients. Whether professionals or relatives, we must then assure them that we gratefully and gladly accept, indeed cherish the burden, but that we also respect their feelings and preferences. As for Oregon, it is another case in point of harmony between palliative care and legal physician-assisted death: the vast majority of patients who died by physician-assisted suicide are in palliative care (3). This said, the above in no way diminishes a) the obligation of the health care system to assure adequate palliative care provisions for all, b) the legal obligation to upon every request of euthanasia offer the patient the possibility of (further) palliative care and c) the need for adequate social and professional surveillance of end-of-life practices. 1 Van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 2007;356:1957-65. 2 Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka- Philipsen B. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘‘vulnerable’’ groups. J Med Ethics 2007;33:591–97. 3 Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA. Physicians' Experiences with the Oregon Death with Dignity Act. N. Engl. J. Med., 2000; 342: 557 - 63. 4 Rietjens J, Bilsen J, Fischer S, van der Heide A, van der Maas P, Miccinessi G, Norup M, Onwuteaka-Philipsen B, Vrakking A, van der Wal G. Using drugs to end life without an explicit request of the patient. Death Studies 2007;31(3):205-221. In response to Gordon's Evidence in Support We want to clarify that during the run-up to legal euthanasia, it was only the number of physician-assisted deaths (euthanasia, physician assisted suicide and life abbreviation without explicit request) that decreased, not the total number of end of life decisions with a potentially life shortening effect. There was only a shift in their types. Intensified pain and symptom control increased from 18.5 to 22% of all non -sudden deaths (1). We interpreted these shifts mainly as evidence for a growing preference for intensified pain and symptom control, including palliative deep sedation. This illustrates the growing impact of the tenets of palliative care on end of life practices. Palliative care and legalisation of euthanasia interacted reciprocally in Belgium. 1 Bilsen J, Vander Stichele R, Broeckaert B, Mortier F, Deliens L. Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium. Soc Sci Med. 2007 Aug;65(4):803-8. In reply to Neto's 'This is not good science' One cannot generally PROVE the correctness of an ethical choice until all its consequences are fully known. What one can do is critically look at the available evidence, thus making informed choices possible. Space constraints did not allow us to elaborate on the ethical foundations for synergy, but we referred to an excellent review of this subject (1). That Belgium has one of the best palliative care systems was shown by the European Association of Palliative Care (2, 3). According to most testimonies, integral palliative care works well in most centres and practices, and for most patients and relatives (4). The impression prevails that when euthanasia is performed, this is almost always done with the same attentionate ‘total’ care as all good palliative care. 1 Hurst SA, Mauron A. The ethics of palliative care and euthanasia: exploring common values. Palliat Med 2006;20:107-12 2 Clark D, ten Have H, Janssens R. Common threads? Palliative care service developments in seven European countries. Palliat Med 2000; 14(6):479-490. 3 Centeno C, Clark D, Lynch T, Rocafort J, Praill D, De Lima L, Greenwood A, Flores LA, Brasch S and Giordano A. Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC task force. Palliat Med 2007; 21; 463-71. 4 Klinkenberg M, Willems DL, Onwuteaka-Philipsen BD, Deeg DJ, van der Wal G. Preferences in end-of-life care of older persons: after-death interviews with proxy respondents. Soc Sci Med. 2004;59(12):2467-77. Competing interests: Jan Bernheim is a secular humanist physician and co-founded the first PC organisation in Belgium. Senne Mullie is a christian physician, the current president of the Flemish Palliative Care Federation |
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Jan L Bernheim, oncologist, Prof. Em. Vrije Universiteit Brussel B1090 Brussels, Belgium, Arsène Mullie, palliative care specialist, current President of the Flemish palliative Care Federation
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Britain is special. The attitudes of British palliative care doctors differ from those of miscellaneous doctors from the continent who take care of dying patients. However, actual end of life decisions, which were never studied as rigorously as on the continent, may not differ quite so much (1). No robust conclusions can at the moment be drawn when comparing the results of methodologically different studies. A recently published 2002 survey of Australian, Belgian, Danish, Dutch, Swedish and Swiss doctors on their attitudes to end-of-life decisions and their decision making has shown that, when confronted with clinical cases, doctors make more life-shortening decisions than would be predicted by their personal attitudes (2). Under a permissive legal status, the strongest determinant factor for euthanasia to be performed is the degree of suffering of the patient (3). Also the national-cultural context was a weightier factor than personal creed. Dutch and Belgian doctors, from countries where a national debate had taken place in the preceding years, irrespective of their life stance, were most inclined to life-shortening decisions (2). This suggests that a national debate impacts on both doctors and patients: it appears to ‘liberalise’ doctors’ views and practices and probably causes more patients to request life shortening end of life decisions. But a national debate also works the other way: in Belgium, during the run-up to legal euthanasia, palliative care spectacularly expanded and the classical tenets of palliative care (listening to patients, vigorous symptom treatment…) became better observed (4). As for donations, until it also got public support, e.g. the Belgian integral palliative day care centre Topaz relied only on charity (5), and trends in the public support for legal euthanasia may also in the UK be underestimated (6). 1 Seale C. National survey of end-of-life decisions made by UK medical practitioners. Palliat Med 2006; 20: 3-10. 2 Cohen J, van Delden J, Mortier F, Löfmark R, Norup M, Cartwright C, Falsst K, Canova C, Omwuteaka-Philipsen B, Bilsen J on behalf of the EURELD consortium. Influence of physicians’ life stances on attitudes to end-of-life decision-making in six countries. J Med Ethics 2008;34:247-53. 3 Georges JJ, Onwuteaka-Philipsen BD, van der Wal G, van der Heide A, van der Maas PJ. Differences between terminally ill cancer patients who died after euthanasia had been performed and terminally ill cancer patients who did not request euthanasia. Palliat Med. 2005;19(8):578-86. 4 Bilsen J, Vander Stichele R, Broeckaert B, Mortier F, Deliens L. Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium. Soc Sci Med. 2007;65(4):803-8. 5 Distelmans W, Bauwens S, Storme G, Tielemans L. Palliative day care in Belgium: first observations. Eur J Palliat Care 2005; 12(4):170-173 6 Cohen J, Marcoux I, Bilsen J, Deboosere P, van der Wal G, Deliens L. Trends in acceptance of euthanasia among the general public in 12 European countries (1981-1999). Eur J Public Health. 2006 Dec;16(6):663-9. Competing interests: Jan Bernheim is a secular humanist physician and co-founded the first PC organisation in Belgium. Senne Mullie is a christian physician, the current president of the Flemish Palliative Care Federation |
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Jan L Bernheim, Oncologist, Emeritus Prof. Vrije Universiteit Brussel, B1090, Brussels, Belgium, Arsène Mullie, palliative care specialist, president of the Flemish Palliative Care Federation
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Carlos Centeno-Cortes, a prominent researcher on palliative care services in Europe, charges us with biased data and points out that euthanasia is nowhere near legalized in other countries with advanced palliative care. Re participation in EAPC conferences, he confuses numbers of participants per country with the per capita numbers that we calculated and depicted in our fig.2, which was published only in bmj.com, and which we reproduce below. The mean numbers of participants (168 from Belgium, 224 from the UK, 185 from Germany and 160 from the Netherlands) are close enough, but the populations of the countries are larger than Belgium by factors 6, 9 and 1.7, respectively. Of note, the other country with legal euthanasia, the Netherlands, came close to second. We did not omit the locations of the 5 conferences. Also by other criteria Belgium scored with the best among 52 countries (1). Our interpretation of the data is not biased. Fig. 2 – Participants in EAPC conferences*, period 2002 – 2005 (mean number per year per 1 million inhabitants)
* Included EAPC-conferences: Berlin and Lyon (2002), The Hague (2003), Stresa (2004) and Aachen (2005).Source : http ://www.eapcnet.org/Policy/CurrentAchiev.htm>http://www.eapcnet.org/Policy/CurrentAchiev.htm † Source : Eurostat, http ://Europa.en.int/ « Why only in Belgium ? » is a question we got during the lengthy reviewing process of our paper (over two years). We replied that this required a dedicated study, but volunteered the following elements : The factors having contributed to successful synergy in Belgium were historical, epidemiological and regulatory. Each of them has direct and underlying dimensions, the latter possibly explaining the proximate factors. The proximate factors, which we to some extent detailed in the paper, included: a) Historical - shared personnel: the physicians involved in the first PC organisation and in several later milestone developments were advocates of legal euthanasia - political expediency: there seems to have been a give-and-take agreement between the political forces traditionally supporting the ‘palliative care’ and ‘euthanasia’ constituencies - the incorporation of palliative care among its core tasks by the public health and national health insurance systems b) The regulatory factors included the endorsements by the professional organizations and official guidelines c) The epidemiological factors included: - public and professional support for PC and acceptance of euthanasia - robust data on attitudes and practices of caregivers regarding end of life decisions - possibly, particularities of the organization of health care in Belgium, e.g. an exceptionally high frequency of house calls by GPs. Most euthanasias occur in the patient's home Behind these proximate factors there are likely underlying political and sociological factors which may help explain the proximate factors. We hypothesise the following: - shared aversion of futile medical practices and joint adherence to the ethical values of patient autonomy and caregiver beneficence (2) - the force of the concept of ideological and religious pluralism, a Belgian political tradition of balance and compromise between religious, social and linguistic constituencies. Characteristically, the government asked a broadly composed panel of ethicists to clarify the issues and present options. Their pluralistic report set the stage for the national debate - the existence, next to the Catholic universities of the Université Libre de Bruxelles and the Vrije Universiteit Brussel, which are dedicated to ‘free inquiry’, and e.g. also pioneered contraception, assisted reproduction and the liberalisation of abortion - the small size of the country, where ‘everybody knows everybody’, so that demonisation of adversaries is less facile and stridency is frowned upon - the high regard for individual autonomy and responsibility among the majority of Belgian catholic health workers (and the public at large). For instance, catholic physicians were shown to practice deliberate medical shortening of survival of their patients no less than their non- believer colleagues, but only upon request of patients (3, 4). The latter observation can be related to the Personalism (Mounier, Ladrière…). This philosophy is popular in e.g. the Catholic University of Leuven, which until about 2000 accounted for ~50% of university graduates in Flanders and in the Université Catholique de Louvain, which accounted for ~40 % of French-speaking graduates - respect for modern religious thinking among Belgian non-believers, as for instance propagated by the influential philosopher Leo Apostel (5) A 2002 survey of Australian, Belgian, Danish, Dutch, Swedish and Swiss doctors on their attitudes to end-of-life decisions and their decision making has shown that personal religion or philosophy is influential, but is trumped by the imperatives of patients’ condition. Also the national or cultural context was a weightier factor than personal beliefs. Dutch and Belgian doctors, irrespective of their life stance, were more inclined to life-shortening decisions, suggesting that a national debate on euthanasia changes views and practices (6). We add that such a debate seems to work both ways: it not only liberalises views on euthanasia, but also promotes the philosophy and practice of palliative care. In other words, it tends to promote integral palliative care. 1 Centeno C, Clark D, Lynch T, Rocafort J, Praill D, De Lima L, Greenwood A, Flores LA, Brasch S and Giordano A. Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC task force. Palliat Med 2007; 21; 463-71. 2 Hurst SA, Mauron A. The ethics of palliative care and euthanasia: exploring common values. Palliat Med 2006;20:107-12 3 Deliens L, Mortier F, Bilsen J, Cosyns M, Vander Stichele RH, Vanoverloop J et al. End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey. Lancet 2000; 356(9244):1806-1811. 4 Bernheim J. On catholics and atheists, lighthouses and navigation systems. Reflections on the euthanasia debate. (in Dutch). Streven, June 2002, pp.523-537. NB ‘Streven’ is a cultural journal sponsored by the Jesus Society (Order of Jesuits) 5 Apostel L. Atheistic religiosity (in Dutch). VUBPress, Brussel, 1998 6 Cohen J, van Delden J, Mortier F, Löfmark R, Norup M, Cartwright C, Falsst K, Canova C, Omwuteaka-Philipsen B, Bilsen J on behalf of the EURELD consortium. Influence of physicians’ life stances on attitudes to end-of-life decision-making in six countries. J Med Ethics 2008;247-53. Competing interests: Jan Bernheim is a secular humanist physician and co-founded the first PC organisation in Belgium. Senne Mullie is a christian physician, the current president of the Flemish Palliative Care Federation |
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Marco Maltoni, Head, Head, Palliative Care Unit Valerio Grassi Hospice, 47034 Forlimpopoli, Italy, Augusto Caraceni and Giovanni Zaninetta
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We recently read the interesting article by Bernheim and coll., “Development of palliative care and legalisation of euthanasia: antagonism or synergy?”.1 The authors describe that in Belgium the diffusion of palliative care and the legalization of euthanasia have gone forward hand in hand, and sustain that the development of the former has reinforced the growth of the latter, and vice versa. The authors back up their claims by providing a chronology of the development of palliative care and the steps towards legalization of euthanasia in Belgium. They also report that the percentage of Belgian doctors trained in palliative care who honour a patient’s request for euthanasia is 2.07-fold higher than that of untrained colleagues (p > 0.05) (overall, 25 out of 1229 non-sudden deaths). However, this philosophy of palliative care seems very distant from that originally described by Dame Cicely Saunders, founder of the modern hospice movement, “In 1959 I first wrote opposing euthanasia, as I was beginning my own research on the nature and management of terminal pain.2 As I wrote then, `This is not to decry that patients do suffer in this country but to claim that the great majority need not do so. Those of us who think that euthanasia is wrong have the right to say so, but also the responsibility to help to bring this relief of suffering about.3 In a guest editorial for Palliative Medicine in 1992, I added, `After more than 30 years of work…that is still my position’ ”.4 Moreover, literature data would seem to indicate that palliative care and euthanasia are in opposition to each other. A study by Parker and coll. on the attitudes of different categories of Australian doctors showed that palliative care physicians were the least likely to agree with hastening death,5 while a study carried out in Switzerland highlighted that Swiss palliative care specialists were the least in favor of euthanasia when compared with medical students and oncologists.6 The hypothesis that familiarity with the care of end-of-life patients is an important underlying factor explaining variance in attitude towards euthanasia has been confirmed by these surveys. In a multivariate analysis on a population of advanced cancer patients receiving palliative care, the extent of the desire to hasten death was significantly correlated with three patient-related factors (perception of being a burden for others, depression, and low family cohesion) and three factors linked to the caregiver (desire of physician to help the patient hasten his/her own death, little training in psychology, and incapacity of physician to deal with the patient’s emotional status).7 Palliative care, in fact, aims to lessen patients’ suffering by helping to reduce their self- perception of uselessness, hopelessness and of being a burden. The strong impact of interventions such as “dignity therapy”, designed to address psychosocial and existential distress among terminally ill patients, has been seen on endpoints regarding the sense of meaning and dignity of the person. In a case series of terminally ill inpatients and patients receiving home-based palliative care, pre- and post-intervention measures showed that 76% of participants reported a heightened sense of dignity, 68% an increased sense of purpose, 67% a heightened sense of meaning, 47% an increased will to live, while 81% confirmed that the intervention had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (p = .023) and reduced depressive symptoms (p = .05).8 Palliative interventions of this type, designed to help patients regain their dignity and to aid physicians in accepting full responsibility for those in their care, virtually eliminated requests for euthanasia in one Palliative Care Unit, where, over a period of six months, 13 (2.1%) out of 611 patients had requested euthanasia.9 After targeted and psychosocial intervention, only 4 (0.7%) patients maintained their original request up to their death, and a strong correlation was found between the ‘persistence’ of the request and factors such as family problems of nervous exhaustion, altered communication, and conflicts.9 In the presence of refractory symptoms, palliative sedation therapy rather than euthanasia can be proposed.10 In a systematic review of the literature, palliative sedation therapy did not have a negative impact on survival.11 Furthermore, in a Japanese study on 102 adult cancer patients from 21 Palliative Care Units given palliative sedation, significant reduced respiratory and/or cardiocirculatory function observed in 20% of patients led to death in just 3.9% of cases, which represents the only subgroup in which the ‘doctrine of double effect’ would have been necessary to justify this type of sedation from an ethical point of view.12 In a large Dutch study, relaxants or barbiturates were almost exclusively used (94% of cases) in the practice of euthanasia, whereas these were never used to induce palliative sedation.13 Finally, Dutch authors have suggested that the lack of an increase in the number of euthanasia cases in Holland, despite the extension of the law on the typologies of patients and clinical situations for which euthanasia is permitted, is due to a better use of palliative care and, in particular, to an increase in palliative sedation therapy, which has thus contributed to reducing, not to implementing, the development of euthanasia in that country.14 Epidemiological data show that the incidence of voluntary euthanasia has also substantially decreased in Belgium as doctors increasingly observe the tenets of palliative care.15 Cognitive psychology has shown that people unconsciously select what they mentally process, and also that they remember what confirms their prior views and ignore what challenges them. Formal data collection therefore tends to challenge rather than confirm personal interpretations of clinical experience.16 On the basis of the above facts and figures, we feel justified in our belief that the growth of palliative care has contributed to reducing the request for and practice of euthanasia in both Holland and Belgium. Marco Maltoni, Head, Palliative Care Unit, Forlì Local Health Authority, and Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori (I.R.S.T.), Meldola, Italy. ma.maltoni@ausl.fo.it Augusto Caraceni, Head, Palliative Care Unit, Fondazione IRCCS, Istituto Nazionale Tumori, Milan, Italy Giovanni Zaninetta, Head, Domus Salutis Hospice, Brescia, Italy Completing interests: None declared. References 1 Bernheim JL, Deschepper R, Distelmans W, Mullie A, Bilsen J, Deliens L. Development of palliative care and legalisation of euthanasia: antagonism or synergy? Br Med J 2008;336:864-7. 2 Saunders C. From the UK. Palliat Med 2003;17:102-3. 3 Saunders C. Care of the dying 1: the problem of euthanasia. Nursing Times 1959:60-1. 4 Saunders C. Voluntary euthanasia. Palliat Med 1992;6:1-5. 5 Parker MH, Cartwright CM, Williams GM. Impact of specialty on attitudes of Australian medical practitioners to end-of-life decisions. Med J Aust 2008;188:450-6. 6 Marini MC, Neuenschwander H, Stiefel F. Attitudes toward euthanasia and physician assisted suicide: a survey among medical students, oncology clinicians, and palliative care specialists. Palliat Support Care 2006;4:251-5. 7 Kelly BJ, Burnett PC, Pelusi D, Badger SJ, Varghese FT, Robertson MM. Association between clinician factors and a patient's wish to hasten death: terminally ill cancer patients and their doctors. Psychosomatics 2004;45:311-8. 8 Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol 2005;23:5520-5. 9 Comby MC, Filbet M. The demand for euthanasia in palliative care units: a prospective study in seven units of the 'Rhône-Alpes' region. Palliat Med 2005;19:587-93. 10 Carr MF, Mohr GJ. Palliative sedation as part of a continuum of palliative care. J Palliat Med 2008;11:76-81. 11 Sykes N, Thorns A. The use of opioids and sedatives at the end of life. Lancet Oncol 2003;4:312-8. 12 Morita T, Chinone Y, Ikenaga M, Miyoshi M, Nakaho T, Nishitateno K, et al Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan. J Pain Symptom Manage 2005;30:320-8. 13 Rietjens JA, van Delden JJ, van der Heide A, Vrakking AM, Onwuteaka -Philipsen BD,van der Maas PJ, et al. Terminal sedation and euthanasia: a comparison of clinical practices. Arch Intern Med 2006;166:749-53. 14 van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 2007;356:1957-65. 15 Bilsen J, Vander Stichele R, Broeckaert B, Mortier F, Deliens L. Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium. Soc Sci Med 2007;65:803-8. 16 Emanuel EJ. Depression, euthanasia, and improving end-of-life care. J Clin Oncol 2005;23:6456-8. Competing interests: None declared |
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Jan L Bernheim, MD, PhD, Prof. Em., Faculty of Medicine Vrije Universiteit Brussel, B1090, Brussels, Belgium, Judith A Rietjens PhD, post-doctoral fellow, End of Life Care Research Group, Vrije Universiteit Brussel
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The locution "the administering of drugs with the explicit intention to shorten survival without the patient's explicit request" which causes Dr Munzareva’s alarm and indignation is one of the technically precise descriptions of interventions that end of life researchers need to obtain unbiased epidemiological data from strictly anonymous questionnaire studies. It may encompass anything between criminal acts (which we abhor as much as Dr Munzareva) and the compassionate shortening of the suffering agony of an irreversibly incompetent dying patient. The vast majority of observed cases belong to the last category. In Belgium, in half of the cases the patient had duly expressed his wish for euthanasia earlier in their disease trajectory, albeit not in a way judged explicit by the doctor, and the estimated shortening of survival was less than a day in half of the cases. Also, the life termination was discussed with the family in 92% of cases (1). Moreover, these cases have become substantially less frequent as palliative care expanded and euthanasia became legal and REGULATED. "The termination of the life of a patient whose suffering was primarily psychological or whose ability to express a well- considered request might have been impaired by, for example, depression or the onset of dementia should be notified in accordance with the procedure for termination of life without the explicit request of the patient. This also applies if the patient was a minor." is an excerpt of the model form for registration that the doctor having administered lethal drugs must submit to the local coroner in the Netherlands (2). If a valid request is documented, the coroner forwards the report to the Regional Evaluation Commission. If not, because this constitutes a breach of exemption of prosecution, he forwards the report to the judiciary for further action. This text is not in any way an official recommendation; on the contrary, it is an injunction that also these cases must be reported for inquiry. (This said, we are grateful for Dr Munzarova’s indignation having drawn our attention to the possibility of misunderstanding or malicious interpretation of the wording of that section of the Dutch model form.) As for the palliativist who refuses a valid request for euthanasia because she KNOWS that (conventional) palliative care is never futile, she is an authoritarian who places her values above the patient’s. Her position falls under ‘strong’ paternalism (i.e. benevolence against the patient’s wishes) and rejects what many view as the core virtue of palliative care: patient-centeredness. 1 Rietjens JA, Bilsen J, Fischer S, van der Heide A, van der Maas PJ, Miccinessi G, Norup M, Onwuteaka-Philipsen BD, Vrakking AM, van der Wal G. Using drugs to end life without the explicit request of the patient. Death Studies 2007;31:206-221. 2 http://www.minbuza.nl/binaries/en-pdf/pdf/faq-euth-2001-en.pdf Competing interests: None declared |
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Jan L Bernheim, MD, PhD, Prof. em., Faculty of Medicine, Vrije Universiteit Brussel B1090 Brussels, Belgium, Arsène Mullie MD, President, Flemish Palliative Care Federation.
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We thank Drs Maltoni, Caracena and Zaninetta for by their thoughtful and well-documented comments having ever so much raised the scientific content of the debate following our paper on synergy between palliative care and legal euthanasia in Belgium. We agree that the Belgian model of 'integral palliative care' has evolved beyond the foundational aims of Dame Cicely Saunders, and that what evolved in Belgium, need not (yet) be possible everywhere. However, it should be noted that a few days ago the Luxemburg parliament has, similarly to Belgium in 2002, approved a euthanasia bill coupled to expansion of palliative care. Our main point was that IN BELGIUM, statistically, involvement in palliative care increased the receptivity for requests of euthanasia and probably improved the care with which it is performed. The openness for euthanasia of many palliativists deepened patient-centeredness and total care, the core philosophy of palliative care. We looked for but did not find any epidemiological or regulatory evidence of antagonism between palliative care and legal euthanasia in Belgium, as Maltoni et al. found in other countries. We therefore should not be faulted to have ignored such evidence. For some underlying reasons why Belgium (and maybe Luxemburg) are so far exceptional, we refer to our May 7th reply to Carlos Centeno’s response of April 23rd. In short, we think the most distinguishing feature of Belgium in this matter is not ethical relativism, but the strength of secular humanism as the core common ethics between ‘moral strangers’, as proposed by the catholic bio-ethicist Engelhardt (1-4). A recurrent theme during the debate preceding legal euthanasia in Belgium was the statement by several prominent palliativists that they never ever received requests for euthanasia. As the national debate developed, requests began to come. We conclude that public reflection on euthanasia dissipated many misunderstandings, enfranchised both caregivers and patients, and led to the development of integral palliative care. Indeed, in the UK and elsewhere palliative care was developed not only for its intrinsic worth but also, explicitly, to prevent euthanasia. In Belgium it was with the opposite secondary goal that the same efforts were made by secularist palliativists: palliative care had to be developed not only because it is per se beneficient, but also because poor care is an unethical motive for euthanasia, so as to make euthanasia acceptable and possible. We further agree and applaud that successful physical, mental and spiritual palliative care can prevent wishes for euthanasia and procure good deaths. However, when despite the provision of appropriate care, a request for euthanasia comes, systematically answering it by dissuasive ‘targeted intervention’ (5) is in our opinion below the ethical standards of patient-centered palliative care. Not wanting to personally carry out euthanasia is honourable, but imposing this view on patients is another matter. In Belgium the doctors who are personally adverse to euthanasia and those few palliative care units where all staff are adverse have a duty to assure the continuity of care by referring the patient to others, or to call others (such as LEIF-doctors) to the rescue (6). This said, there should of course be no pressure on patients to choose euthanasia or on caregivers to perform it. We suggest the same evolution should be envisaged as in reproductive health care (abortion, assisted reproduction …). It should be remembered that until 1998, the International Federation of Gynaecology and Obstetrics (FIGO) rejected abortion in much the same essentialistic terms as e.g. the European Association of Palliative Care (EAPC) in 1994 rejected euthanasia (7). The EAPC now opposes legal euthanasia on more pragmatic grounds (risk of slippery slope effects and alleged antagonism to the development of palliative care) (8) that we have demonstrated not to be verified in Belgium. However, recently, the EAPC took the unprecedented backward step to bar studies on the practice of euthanasia from presentation in its 2008 research conference. A sobering thought should be that the November 2006 FIGO ethical guidelines on abortion now read: ... Neither society nor the health care team responsible for counselling women, have the right to impose their religious or cultural convictions on those whose attitudes are different. ... Some doctors consider that abortion is not permissible whatever the circumstances. Respect for their autonomy means that no doctor (or member of the medical team) should be obliged to advise or perform an abortion against his or her personal conviction. Their careers should not be prejudiced as a result. Such a doctor, however, has an obligation to refer the woman to a colleague who is not in principle opposed to termination. ... In summary the Committee recommended that after appropriate counselling, a woman has the right to have access to medical or surgical induced abortion and that the health care service has an obligation to provide such services ...(9). 1 Hurst SA, Mauron A. The ethics of palliative care and euthanasia: exploring common values. Palliat Med 2006;20:107-12 2 Bernheim J. On catholics and atheists, lighthouses and navigation systems. Reflections on the euthanasia debate. (in Dutch). Streven, June 2002, pp.523-537. 3 Apostel L. Atheistic religiosity (in Dutch). VUBPress, Brussel, 1998 4 Engelhardt H.T. Bioethics and Secular Humanism. Trinity Press, 1991 5 Comby MC, Filbet M. The demand for euthanasia in palliative care units: a prospective study in seven units of the 'Rhône-Alpes' region. Palliat Med 2005;19:587-93 6 Distelmans W, Bauwens S. Palliative care is more than terminal care. Belg J Med Oncol 2008;2:16-20. 7 Roy DJ, Rapin CH. Regarding euthanasia. Eur J Palliat Care 1994; 1:57-59 8 Materstvedt LJ, Clark D, Ellershaw J, Forde R, Gravgaard AM, Muller -Busch HC et al. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force. Palliat Med 2003; 17(2):97-101. 9 http://www.figo.org/docs/Ethics%20Guidelines%20- %20English%20version%202006%20-2009.pdf Competing interests: Jan Bernheim is an oncologist adhering to secular humanism; Senne Mullie is a christian palliativist |
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John C Chambers, Macmillan Consultant and Medical Director Katharine House Hospice, East End, Adderbury, Oxon, OX17 3NL
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I fully agree with David Evans that a person’s beliefs, values and principles will influence their views and arguments on assisted dying and a great many other topics besides. How could it possibly be otherwise? These special beliefs are developed to different degrees in different people, and whilst they may be built upon the foundations of one or more identifiable religious, political or philosophical codes, they nearly always reveal significant idiosyncrasies. In the debate over assisted dying, I personally do not think it matters one iota whether a person identifies themselves as a Roman Catholic, fundamentalist Christian or humanist or whether they say absolutely nothing on such matters, to quote the specific categories raised by Evans. All components of their belief set that are essential to the particular argument they are presenting will inevitably be presented within that argument. If they are omitted, then the argument will simply not stand or will be significantly weakened. To suggest that the debate over assisted dying is nothing more than a polarisation between the religious and the irreligious is nonsense. One only has to look at the correspondence on the BMJ website over recent years for evidence of this. Some arguments against assisted death have had nothing whatsoever to do with God, and several supporters of assisted death have made their belief in God perfectly clear. Competing interests: None declared |
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Jan L Bernheim, Oncologist, retired prof. of medicine Vrije Universiteit Brussel, Arsène Mullie, Palliativist, President , Flemish Palliative Care Federation
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In response to our April 19th BMJ paper on synergy between palliative care and euthanasia, Dr Evans, a defender of merciful life ending, jestingly wrote that religion is a competing interest in the euthanasia debate. Dr Chambers, an opponent to euthanasia, sternly stated religion had nothing to do with it. We happen to have data from robust death-certificate studies on this question (1). Not surprisingly, the evidence is more subtle. A bibliography of physician ATTITUDES is to be found in that paper: on aggregate, religious faith, especially catholic, is associated with opposition to (voluntary) euthanasia (1). However, the PRACTICES of Belgian doctors differ little depending on their life stance, and then only in more complex ways. The frequency of performing (voluntary) euthanasia was similar between the majority catholic doctors and the minority (33%) unreligious. However, compassionate life-abbreviation without explicit request (almost always in extremis and in patients having become comatose or otherwise unable to express themselves) occurred three times more frequently when the doctor was non-religious (2). This suggests that, at least in Flanders (Belgium), religion does not reduce the practice of euthanasia, but is associated with higher demands of patient autonomy and less willingness to act in a paternal beneficent way. Is Flanders (Belgium) exceptional? Maybe somewhat. Godfried Cardinal Danneels of Belgium for example said the Catholic Church (contrary to e.g. Islam) had been privileged to benefit from the French revolution. When asked whether he didn’t rather mean the Enlightenment, he said "Both": religious modernity was shaped by the Enlightenment, which put science and faith in different realms and by the French Revolution, which separated church from state. However, there is also a strong universal undercurrent for disenfranchising the bedside from state and religious constraints. The catholic physician-bioethicist Tristram Engelhardt proposed secular humanism as a common language between moral strangers (3). As for the European general public, during the 1980s and 1990s, acceptance of euthanasia, though inversely related to religiosity (4), increased more than to the extent that religiosity decreased (5). This indicates that some believers become more tolerant or proponents of euthanasia themselves. The debate following our paper seems to be petering out. Beyond scientific evidence, it also dealt with personal beliefs. This may be our last opportunity to communicate some of ours, and to reply to a repeatedly encountered question when we presented our data in e.g. the USA: “How does it feel to perform euthanasia?” Both of us adhere to the legal and procedural ethical conditions of life ending, trying to act beneficently, non-maleficently and with respect of patients’ autonomy. We probably do not differ in practice. We endeavour to enhance the solemnity of patients’ deaths. AM belongs to the Christian spiritualistic tradition. Helping a patient to die has a sacral dimension for him. JB is an atheist. After performing euthanasia, he feels tired, but satisfied to have given his best professionally. Both of us often felt gratified by the appreciation that the relatives most often express. 1 Mortier , Bilsen J, Vander Stichele RH, Bernheim J, Deliens L. Attitudes, Sociodemographic Characteristics, and Actual End-of-Life Decisions of Physicians in Flanders, Belgium. Medical Decision Making, 23 (6) 502-10, 2003. 2 Deliens L, Mortier F, Bilsen J, Cosyns M, Vander Stichele RH, Vanoverloop J, et al. End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey. Lancet 356:1806-11, 2000. 3 Engelhardt HT. Bioethics and secular humanism.SCM Press, London, 1991. 4 Cohen J, Marcoux I, Bilsen J, Deboosere P, van der Wal G, Deliens L. European public acceptance of euthanasia: Socio-demographic and cultural factors associated with the acceptance of euthanasia in 33 European countries. Soc Sci Med 63: 743-56, 2006. 5 Cohen J, Marcoux I, Bilsen J, Deboosere P, van der Wal G, Deliens L. Trends in acceptance of euthanasia among the general public in 12 European countries (1981-1999). European Journal of Public Health, 16 (6): 663-9, 2006 Competing interests: None declared |
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