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Development of Palliative Care and Legalisation of Euthanasia: Antagonism or Synergy The Belgian Experience

Dame Cicely Saunders on Euthanasia. In 1959 I first wrote opposing euthanasia (?). Those of us who think that euthanasia is wrong have the right to say so, but also the responsibility to help to bring (?) relief of suffering about*. In 1992, I added, `After more than 30 years of work?that is still m

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Development of Palliative Care and Legalisation of Euthanasia: Antagonism or Synergy The Belgian Experience

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    1. Development of Palliative Care and Legalisation of Euthanasia: Antagonism or Synergy? The Belgian Experience* Jan Bernheim1,2,3, Reginald Deschepper1, Wim Distelmans1, Johan Bilsen1, Arsène Mullie4 . Luc Deliens1 1 End-of-Life-Care Research Group, 2 Centre for Bioethics, 3 Dept of Human Ecology, Vrije Universiteit Brussel 4 Federation Palliative Care Flanders National Conference on End-of-Life Issues Liverpool, Nov.4th 2008 *Based on: BRITISH MEDICAL JOURNAL 336: 864-867, 2008

    2. Dame Cicely Saunders on Euthanasia In 1959 I first wrote opposing euthanasia (…). Those of us who think that euthanasia is wrong have the right to say so, but also the responsibility to help to bring (…) relief of suffering about*. In 1992, I added, `After more than 30 years of work…that is still my position’** * Saunders C. Care of the dying 1: the problem of euthanasia. Nursing Times 1959:60-1. ** Saunders C. Voluntary euthanasia. Palliat Med 1992;6:1-5.

    3. Foundations of PC and Legalisation of Euthanasia

    4. The European Association for Palliative Care (EAPC) on euthanasia Official positions 1995: blanket rejection 2003: “...euthanasia should not be part of the responsibility of Palliative Care (PC)...” (Materstvedt et al. Palliat. Med. 2003;17: 97-101) Motivations Essentialistic: fundamental antagonism Pragmatic: 1 Slippery slope 2 Legalising euthanasia feared to impede development of PC

    6. Research Question ? what was the relation Euthanasia-PC in Belgium? Absent ? Antagonistic (~ most of the world)? Synergistic?

    7. Methods Literature review historical epidemiological regulatory Personal experience

    8. RESULTS

    9. 1. HISTORY

    11. A short history of euthanasia and PC in Belgium Palliative Care 1980 Continuing Care (Community) 1982 1983 PC in curric. students VUB 1985 PCU St Luc Univ.Cath.Louvain 1989 PCU St Jan Hospital Brussels 1990 1st scient. article on ‘Integral PC’ 1995 start public funding of PC 1996 Number of hospice beds reaches 360 1998 15 regional PC networks 1999 2001 Law nationwide funding PC (budget doubling) Endorsement ‘Integral PC’ by Federation. Palliative Care Flanders 2007 New political majority pledges > public funding Euthanasia Assoc. Drt Mourir dans la Dignité Recht op Waardig Sterven Euthan in curric. students VUB 1st draft bill MPs submit draft law Report. Govt. Advisory Comm. Bioethics: 3 options Governmental majority draft bill Parliamentary hearings Passing of law Endorsement Med. Discipl. Board, Sc. Assoc. Flemish GPs New parliamentary majority pledges not to rescind euthanasia legislation

    12. Shared values, shared personnel Earliest activists for PC were also activists for legalisation Concept of ‘Integral Palliative Care’ already clear in 1980s. E.g. Bernheim J. [Cognitive revolution and mastery over life and death. A physician's considerations on the euthanasia issue] (in Dutch). In: Suzanne C, Stuy J, editors. Bio-ethiek.Brussels: VUB Press; 1990. p. 103-9. Bernheim JL. [The patient-physician information contract, orthothanasia and euthanasia: cognitive bearings to transcend a legal and ethical deadlock] (in Dutch). In: Desmedt L, Van Kerckhove C, editors. Waardig Sterven. Antwerpen: De Humanistische Pers; 1996. p. 67-82. >1988 VUB students interned in St Jan Hospice >1990 Some pts referred by Catholic hospitals to VUB/ULB hospitals for euthanasia LEIFartsen (physicians assisting their colleagues in responding to requests for euthanasia) are trained in PC

    13. Typical evolution of stances “You must always see to it that your decision brings peace and serenity… When I think of the human aspect, I can’t escape the conclusion that a decision of euthanasia brings serenity to some people. Not all my experiences with euthanasia were cold and callous; some were quite warm and humane, with lots of support and solidarity between those involved.” Dr Marc Desmet SJ, head of palliative care, Virga Jesse Hospital, Hasselt, Belgium. In: Tertio, 2008. Father Desmet formerly opposed legalisation.

    15. 2. EPIDEMIOLOGY

    16. Epidemiology 1/3 Penetration PC 1999 (N of PC beds per capita): UK>Be>Sw>Esp>D>Nl>It (Clark, Pall Med 2000) Personnel: many initiators of PC simultaneously advocates of euthanasia Physicians with training in PC do not perform euthanasia less than those without (ELD death certificate study 1998 (Deliens et al., Lancet 2000)). ? Euthanasia part & parcel of PC for many

    17. PERCENT END-OF-LIFE DECISIONS ACCORDING TO POST-GRADUATE TRAINING IN PALLIATIVE OR TERMINAL CARE IN BELGIUM 1998 (weighted row percentages)

    18. Epidemiology 2/3 Slippery slope? Inversed!

    19. Epidemiology 2/3 Conclusions re Evolutions: More practice of PC-inspired ELDs: decrease of incidence euthanasia, increase of intensified alleviation of pain & symptoms (including terminal sedation) ? 1. No slippery slope 2. Principles of PC modify Euthanasia practices Bilsen J, et al. Trends in medical end-of-life decisions in Belgium between 1998 and 2001: Effects of the euthanasia debate? Soc Sci Med 2007 May 7

    20. Epidemiology 3/3 Per capita participants in EAPC conferences, 2002 – 2005

    21. 3. REGULATORY

    22. Regulatory 1/2 2002: ‘Euthanasia’ and ‘Nationwide-PC-Covering’ bills presented to and passed together in the Belgian Parliament. Budget of PC doubled. 2003: Belgian Medical Disciplinary Board joint guidelines for euthanasia and PC (Tijdschr. Geneesk. 2004)

    23. Regulatory 2/2 2003: Flemish Federation for PC position paper: “…Palliative care and euthanasia are neither alternatives nor antagonistic. (…) Euthanasia may (…) be part of palliative care (…). Caregivers are fully entitled to ethical limitations, but they must be expected to state these limitations candidly, clearly, and above all in due time.” 2003: Scientific Society of Flemish General Practitioners (WVVH) endorses “Euthanasia (…) in the framework of integral palliative care”

    24. ? Conclusion for Regulatory Aspects After the legalisation of Euthanasia, professional guidelines acknowledged made possible endorsed prescribed ‘Integral PalliativeCare’, including the possibility of euthanasia In effect, these organisations endorse PROCEDURAL rather than NORMATIVE ethics

    25. The palliative care/euthanasia paradox is not a paradox Dame Cicely Saunders: develop palliative care to prevent euthanasia Belgium: develop palliative care to enable euthanasia Palliative care as a ‘Trojan horse’? = unfair criticism to both Dame Cicely Saunders and to Belgium

    26. Overall conclusions No evidence for antagonism between developments of PC and Euthanasia Partially shared values and personnel Synergistic co-evolution: reciprocal facilitation Current situation in Belgium: Pluralism among PC units: full range between intolerance and active practice of euthanasia = of interest for other countries? more info: jan.bernheim@vub.ac.be

    27. Discussion

    28. Discussion 1/4 Why synergy only in Belgium? 1. Politically: Belgian institutional system of pluralism and checks and balances between ‘conservative/catholic’ and ‘progressive/secular’ constituencies ? legal euthanasia and development of PC = ‘give & take’ compromise. 2. Life stances modernistic: Influence of Personalism among Catholics ‘Atheistic religiosity’ among seculars (see Joachim Cohen’s presentation)

    29. Discussion 2/4 Why synergy only in Belgium? 3. PC = in National Health and National Health = pluralistic ALL OVER THE WORLD: Intellectually and ethically: Strong case for ‘integral’ palliative care Sample of literature: Bernheim JL. [The patient-physician information contract, orthothanasia and euthanasia: cognitive bearings to transcend a legal and ethical deadlock] (in Dutch). In: Desmedt L, Van Kerckhove C, editors. Waardig Sterven. Antwerpen: De Humanistische Pers; 1996. p. 67-82 Hurst SA, Mauron A. The ethics of palliative care and euthanasia: exploring common values. Palliat Med 2006;20:107-12.

    31. Discussion 3/4 How does it feel to carry out euthanasia? Senne Mullie: good practice, but also a sacral experience Jan Bernheim: tiring, but not at all like abortion, more like delivery, gratifying in a progressive evolutionary worldview Both: gratified by feelings of satisfaction often expressed by relatives

    32. Discussion 4/4 ANALOGY ABORTION & EUTHANASIA? INTERNATIONAL FEDERATION OF OBSTETRICS AND GYNAECOLOGY (FIGO) ON ABORTION < 1998 : Rejection http://www.figo.org 1998 : “ (…) a woman's right to autonomy justifies the provision of safe abortion. (...) after appropriate counseling, a woman [has] the right to (...) abortion (...) the health care service [has] an obligation to provide such services as safely as possible.” [i] EUR ASSOC PALL CARE (EAPC) ON EUTHANASIA 1995: Rejection 2003: “...euthanasia should not be part of the responsibility of Palliative Care (PC)...” Future: ???

    34. Illustration: recent Belgian research in end-of-life issues

    35. SUBJECTIVE WELLBEING AND END-OF-LIFE DECISIONS IN THE LOCKED-IN SYNDROME (LIS) Jan L Bernheim1, 2, Marie-Aurélie Bruno1, Athena Demertzi1, Didier Ledoux1, Frédéric Pellas1, Steven Laureys1 1Coma Science Group, Neurology department, Cyclotron Research Centre, University of Liège (Liège, BE) 2 Dept of Human Ecology, Vrije Universiteit Brussel, The French Association for Locked-In Syndrome (ALIS) http://alis-asso.fr/ www.comascience.org

    37. AIMS: In collaboration with the French Association for Locked-In Syndrome (LIS), we studied chronic LIS patients’ self-rated overall wellbeing. METHODS 97 patients with LIS were asked to answer a questionnaire dealing with their condition, subjective wellbeing (Anamnestic Comparative Self Assessment (ACSA) scale and end-of-life issues.

    38. Quality of life in Locked-in Syndrome On average QoL in LIS was not significantly lower than in 820 healthy controls (1.0±3.1 and 1,7±1,8 respectively), but -uniquely in QoL research- ratings were bimodal, 2/3 happy and 1/4 miserable

    39. Happy majority, miserable minority

    40. Case report: a 44 year old woman who had been in LIS for 4 years requested and obtained euthanasia and organ donation for transplantation The majority (55%) wish to be resuscitated in case of a life-threatening event. 5% currently wish for euthanasia, 40% have considered it in the past.

    41. Consequences for clinical practice Recently-struck LIS patients wishing to die should be assured that they have a substantial chance to with optimal supportive care rebuild a happy life. Patients requesting to forsake life-prolonging treatment or –where legal- euthanasia, should not be rebuked, but a moratorium allowing the reaching of steady state should be proposed and total care should be given until adaptation has succeeded or not.

    43. Regulatory 3/3

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