Development of palliative care and legalisation of euthanasia: antagonism or synergy?
BMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39497.397257.AD (Published 17 April 2008) Cite this as: BMJ 2008;336:864All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
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
Competing interests: No competing interests
Religiosity and Euthanasia: in reply to Drs Chambers & Evans
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
Competing interests: No competing interests