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Lead author Professor Ezekiel Emanuel discusses the findings of the JAMA study.

Several of the world's foremost researchers in medical end-of-life matters have released a detailed and comprehensive review of the practice of assisted dying in lawful jurisdictions around the world. Published in the Journal of the American Medical Association, it does not support slippery slope hypotheses.

Professors from universities in the USA, the Netherlands and Belgium studied data from government and statutory authority reports, primary scientific studies and other sources to examine how assisted dying has been practiced in different jurisdictions around the world where it is lawful in one form or another: self-administered medication (physician-assisted dying) or physician-administered medication (active voluntary euthanasia).1

Their primary conclusion is that:

"Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices."

Key findings

Key findings include:

  • Public opinion favouring assisted dying in developed countries has been increasing, or remained stable at high levels of approval.
  • The trends seem to correlate with decreasing religiosity in Western countries.
  • The only place where assisted dying approval appears to be decreasing is in eastern Europe, where religiosity has been increasing.
  • Approval amongst physicians seems to be consistently lower than amongst the public.
  • Assisted dying occurs everywhere, including juridictions where it is unlawful (as I have previously reported).
  • Most individuals who choose assisted dying have advanced cancer (as I have previously reported).
  • Supposedly 'vulnerable' groups are not represented in assisted dying figures at rates any higher than their presence in the overall population.
  • Numbers of assisted deaths in lawful jurisdictions continue to increase, but represent a tiny minority of deaths.
    • In jurisdictions where only self-administration is permitted, assisted deaths represent around 0.3% of all deaths.
    • In jurisdictions where physicians may administer, assisted deaths represent around 3–5% of all deaths.
  • Assisted deaths for minors and those with dementia are a very small minority of cases (as I have previously reported).
  • The dominant reasons for requesting assisted death include loss of autonomy and dignity and the inability to enjoy life and regular activities; not physical pain.
  • Doctors still report that honouring a request for assisted death is emotionally burdensome; not a routine or welcomed option.
     

"In no jurisdiction was there evidence that vulnerable patients have been receiving euthanasia or physician-assisted suicide at rates higher than those in the general population."

Complication rates

One aspect of the study is worthy of special mention: the small rate of assisted dying procedure complications. The available data suggests that complications may occur more often for self-administered medication than for physician administration:

  • For self-administration—
    • Difficulty in swallowing in 9.6% of cases
    • Vomiting or seizures in 8.8% of cases
    • Awakening from coma in 12.3% of cases
  • For physician administration—
    • Technical problems such as difficulty in finding a suitable vein in 4.5% of cases
    • Vomiting or seizures in 3.7% of cases
    • Awakening from coma in 0.9% of cases
       

This data is however of Dutch practice in the 1990s, before assisted dying was codified in statute—at a time when practice was poorly defined and a range of drugs, including opioids, were widely used. Now, practice is well-defined with almost universal use of barbiturates. The researchers expressly note that these complication rates may well have reduced.

Further, the authors refer to more recent data from Oregon and Washington which indicate very much lower complication rates (in those jurisdictions for self-administration only):

  • In Oregon, the complication rates are around 2.4% for regurgitation and 0.7% for awakening from coma.
  • In Washington, the complication rates are around 1.4% for regurgitation, plus a single case of seizure.
     

The importance of context

It is worth comparing the complication rates of assisted dying procedures with rates for other medical interventions to provide an appropriate context so that they may be realistically interpreted.

For example, a study of common over-the-counter analgesics for short-term pain management2 found that significant adverse effects occurred amongst 13.7% of ibuprofen users, 14.5% of paracetamol useres and 18.7% of aspirin users.

In another example, an anlaysis of primary research about surgical outcomes found that 14.4% had adverse events, almost half of which (47.5%) were moderate to fatal in severity.3

Conclusion

The study is a solid synthesis of research data and indicates that assisted dying is accessed sparingly and in accordance with the intentions of each legislature.

The adverse event rate for assisted dying appears to be substantially lower than the rate of adverse events in the use of common over-the-counter analgesics and in surgery.

 

References

  1. Emanuel, EJ, Onwuteaka-Philipsen, BD, Urwin, JW & Cohen, J 2016, 'Attitudes and practices of euthanasia and physician-assisted suicide in the united states, canada, and europe', JAMA, 316(1), pp. 79-90.
  2. Moore, N, Ganse, EV, Parc, J-ML, Wall, R, Schneid, H, Farhan, M, Verrière, F & Pelen, F 1999, 'The PAIN Study: Paracetamol, Aspirin and Ibuprofen new tolerability study', Clinical Drug Investigation, 18(2), pp. 89-98.
  3. Anderson, O, Davis, R, Hanna, GB & Vincent, CA 2013, 'Surgical adverse events: a systematic review', Am J Surg, 206(2), pp. 253-62.
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Around the world, doctors help patients with assisted dying, regardless of whether it is legal in their jurisdiction or not.

For example, in Australia, where assisted dying is illegal, research reveals that assisted dying is widely practiced. Many Australian nurses have collaborated with doctors to provide assisted dying, and have occasionally even done so without consulting a doctor (Kuhse & Singer 1993). Nurses in New Zealand also provide assisted dying, sometimes without consulting a doctor (Malpas, Mitchell & Koschwanez 2015; Mitchell & Owens 2004).

"Euthanasia is common. It's practiced out of sight, under wraps, no regulation, no rules, no supervision." Prof. Peter Baum (Baum 2001)

Professor Baum's statement is borne out by scientific research. A national survey of Australian doctors in 1996 found that 1.9% of deaths were the result of voluntary euthanasia (VE) or physician-assisted dying (PAD) (Kuhse et al. 1997). By comparison, the rate in the Netherlands in 1995 (the closest year of empirical research data) was 2.6% (Onwuteaka-Philipsen et al 2012). The rate of medically assisted deaths in Australia, where the practice is illegal, was three quarters the rate of the Netherlands, where the practice is legal.

Dutch and Australian assisted dying rates comparedSimilarly, Douglas and colleagues (2001) surveyed Australian surgeons, finding that more than a third had provided drugs with the intention to hasten patient death, and with more than half of cases lacking an express request from the patient.

Forms of medically assisted dying have been found to occur not only in Australia (and in the Netherlands where it has been lawful for decades), but in Belgium prior to its law reform (Chambaere et al. 2015); Switzerland, Denmark, Sweden and Italy (van der Heide et al. 2003); the UK (Seale 2009a; Seale 2009b); the USA (Back et al. 1996; Bonn 2000; Emanuel, Fairclough & Clarridge 1996; Lachman 2010; Schwarz 2003; Schwarz 2004); France (Riou et al. 2015); Norway (Forde & Aasland 2014; Forde, Aasland & Falkum 1997); and even in conservative Greece (Voultsos, Njau & Vlachou 2010); Northern Ireland (McGlade 2000) and Pakistan (Imran et al. 2014).

Indeed, "euthanasia is performed worldwide, regardless of the existence of laws governing it" (Gastmans et al. 2006), "in all countries studied" (Muller, Kimsma & Van Der Wal 1998), "albeit in a secretive manner" (Rosenfeld 2000), "in the privacy of their [doctor-patient] relationship" (Cassell 1995), with repeated involvement of some physicians (Smith 2007), and frequent failure to adhere to high standards when illegal (Emanuel et al 1998).

Even Dr Brendan Nelson, while President of the Australian Medical Association, acknowledged that he had helped hasten the death of a patient. He stated that in the "2 percent of cases" where there was no hope of recovery, that "patients, their families and their doctors make those decisions [for euthanasia]" though clandestinely, because "technically it would be illegal" (Nelson 1995).

 

nelsoneuthanasiasecretsmall.jpg

AMA's President, Brendan Nelson, in 1995.

 
The evidence is irrefutable: there is underground assisted dying worldwide
and it demonstrates that there is a profound need for assisted dying law reform to allow dying patients the right to seek a peaceful hastened death, and to protect doctors and nurses who provide that assistance. Law reform would also force assisted dying from the dark shadows, creating transparency and accountability around the process, which would then be open to discussion and improvement if required.

Intolerable and unrelievable patient suffering drives underground assisted dying across the world in jurisdictions where it is illegal, with no standards of practice or transparent oversight.

 

References

Back, AL, Wallace, JI, Starks, HE & Pearlman, RA 1996, 'Physician-assisted suicide and euthanasia in Washington State: Patient requests and physician responses', JAMA, vol. 275, no. 12, pp. 919-925.

Baum, P 2001, ABC News, TV broadcast 23 Jan, ABC, Sydney.

Bonn, D 2000, 'Support for euthanasia falls as care of dying patients improves', The Lancet Oncology, vol. 1, no. 3, p. 133.

Cassell, EJ 1995, 'Treating the patient's subjective state', Pain Forum, vol. 4, no. 3, pp. 186-188.

Chambaere, K, Vander Stichele, R, Mortier, F, Cohen, J & Deliens, L 2015, 'Recent trends in euthanasia and other end-of-life practices in Belgium', N Engl J Med, vol. 372, no. 12, pp. 1179-1181.

Douglas, C, Kerridge, IH, Rainbird, KJ, McPhee, JR, Hancock, L & Spigelman, AD 2001, 'The intention to hasten death: a survey of attitudes and practices of surgeons in Australia', Medical Journal of Australia, vol. 175, no. 10, pp. 511-515.

Emanuel, EJ, Daniels, ER, Fairclough, DL & Clarridge, BR 1998, 'The practice of euthanasia and physician-assisted suicide in the United States: adherence to proposed safeguards and effects on physicians', JAMA, vol. 280, no. 6, pp. 507-513.

Emanuel, EJ, Fairclough, DL & Clarridge, BR 1996, 'Euthanasia and physician-assisted suicide: Attitudes and experiences of oncology patients, oncologists, and the public', Lancet, vol. 347, no. 9018, pp. 1805-1810.

Forde, R & Aasland, OG 2014, 'Are end-of-life practices in Norway in line with ethics and law?', Acta Anaesthesiol Scand, Aug 14.

Forde, R, Aasland, OG & Falkum, E 1997, 'The ethics of euthanasia -- attitude and practice maong Norwegian physicians', Social Science & Medicine, vol. 45, no. 6, pp. 887-982.

Gastmans, C, Lemiengre, J, van der Wal, G, Schotsmans, P & Dierckx de Casterle, B 2006, 'Prevalence and content of written ethics policies on euthanasia in Catholic healthcare institutions in Belgium (Flanders)', Health Policy, vol. 76, no. 2, pp. 169-78.

Imran, N, Haider, II, Jawaid, M & Mazhar, N 2014, 'Health ethics education: Knowledge, attitudes and practice of healthcare ethics among interns and residents in Pakistan', Journal of Postgraduate Medical Institute, vol. 28, no. 4, pp. 383-389.

Kuhse, H & Singer, P 1993, 'Voluntary euthanasia and the nurse: an Australian survey', International Journal of Nursing Studies, vol. 30, no. 4, pp. 311-322.

Kuhse, H, Singer, P, Baume, P, Clark, M & Rickard, M 1997, 'End-of-life decisions in Australian medical practice', Medical Journal of Australia, vol. 166, no. 4, pp. 191-196.

Lachman, V 2010, 'Physician-assisted suicide: compassionate liberation or murder?', Medsurg nursing : official journal of the Academy of Medical-Surgical Nurses, vol. 19, no. 2, pp. 121-125.

Malpas, P, Mitchell, K & Koschwanez, H 2015, 'End-of-life medical decision making in general practice in New Zealand—13 years on', New Zealand Medical Journal, vol. 128, no. 1418, pp. 27-39.

McGlade, KJ, Slaney, L, Bunting, BP & Gallagher, AG 2000, 'Voluntary euthanasia in Northern Ireland: General practitioners' beliefs, experiences, and actions', British Journal of General Practice, vol. 50, no. 459, pp. 794-797.

Mitchell, K & Owens, G 2004, 'End of life decision-making by New Zealand general practitioners: A national survey', New Zealand Medical Journal, vol. 117, no. 1196, pp. 1-11.

Muller, MT, Kimsma, GK & Van Der Wal, G 1998, 'Euthanasia and assisted suicide: Facts, figures and fancies with special regard to old age', Drugs and Aging, vol. 13, no. 3, pp. 185-191.

Nelson, B 1995, 'Euthanasia a family affair says top doc', The Sunday Territorian, Darwin, 21 May.

Onwuteaka-Philipsen, BD, Brinkman-Stoppelenburg, A, Penning, C, de Jong-Krul, GJF, van Delden, JJM & van der Heide, A 2012, 'Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey', The Lancet, vol. 380, no. 9845, pp. 908-915.

Riou, F, Aubry, R, Pontone, S & Pennec, S 2015, 'When physicians report having used medical drugs to deliberately end a patient's life: Findings of the "end-of-life in France" survey', Journal of Pain and Symptom Management, vol. 50, no. 2, pp. 208-215.

Rosenfeld, B 2000, 'Assisted suicide, depression, and the right to die', Psychology, Public Policy, and Law, vol. 6, no. 2, pp. 467-488.

Schwarz, JK 2003, 'Understanding and responding to patients' requests for assistance in dying', Journal of Nursing Scholarship, vol. 35, no. 4, pp. 377-384.

Schwarz, JK 2004, 'Responding to persistent requests for assistance in dying: a phenomenological inquiry', International Journal of Palliative Nursing, vol. 10, no. 5, pp. 225-235.

Seale, C 2009a, 'End-of-life decisions in the UK involving medical practitioners', Palliat Med, vol. 23, no. 3, pp. 198-204.

Seale, C 2009b, 'Hastening death in end-of-life care: a survey of doctors', Social Science & Medicine, vol. 69, no. 11, pp. 1659-1666.

Smith, SW 2007, 'Some realism about end of life: The current prohibition and the euthanasia underground', American Journal of Law and Medicine, vol. 33, no. 1, pp. 55-95.

van der Heide, A, Deliens, L, Faisst, K, Nilstun, T, Norup, M, Paci, E, van der Wal, G & van der Maas, PJ 2003, 'End-of-life decision-making in six European countries: descriptive study', The Lancet, vol. 362, no. 9381, pp. 345-350.

Voultsos, P, Njau, SN & Vlachou, M 2010, 'The issue of euthanasia in Greece from a legal viewpoint', J Forensic Leg Med, vol. 17, no. 3, pp. 131-6.

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On 16th September 2015, the Victorian Director of the Australian Christian Lobby (ACL), Dan Flynn, appeared as a witness to the Victorian Parliament’s end of life choices inquiry being conducted by the Legal and Social Issues Committee. He made a number of mistaken statements, but what was most worrisome was the revelation of the ACL’s real agenda: to wind back patient rights more than a quarter century.

 

Out of touch

In his opening address, Mr Flynn opined that assisted dying was 'not supported' by a 'broad base' of Victorian Christians (not just the ACL). This belief is diametrically at odds with clear and repeated evidence from multiple sources.

In 2012, I reported on a Newspoll study into Australian attitudes towards assisted dying. Not only did a whopping majority of citizens support assisted dying, but so did a great majority of Anglicans, Catholics and other Christians (Francis 2012).

 

Australian attitudes to assisted dying law reform in 2012

Newspoll 2012: Australian attitudes to assisted dying law reform by religion (green=support, red=oppose)

These national results are reflected by a sample of over 60,000 Victorians through the VoteCompass system during the 2014 Victorian election (Stayner 2014). It confirms a substantial majority of Catholics, Protestants, other religious and non-religious Victorians support assisted dying law reform.

 

votecompassvicvereligion2014.jpg

VoteCompass 2014: Victorian attitudes to assisted dying law reform by religion (grey=population average)

Out of date

Mr Flynn then referred to a Tasmanian Parliament’s inquiry into assisted dying which rejected law reform. However, the inquiry to which he refers was held in 1998, when Oregon’s Death With Dignity Act had barely been established, the Northern Territory’s Rights of the Terminally Ill Act had been extinguished within just eight months of coming into operation, and the Dutch, Belgian, Luxembourg, Washington and other legislation and judgements did not yet exist.

So, the Tasmanian Parliament’s rejection came from a position of a then general lack of information. The Oregon law has been in effect since 1997, the Netherlands and Belgium since 2002, Washington since 2008, Luxembourg since 2009, and so on. There is now plenty of evidence that assisted dying law reform doesn’t cause slippery slopes that opponents love to theorise about.

Wrong about ‘United Nations’

Mr Flynn then said that the United Nations had in 2012 expressed concern about a ‘lax attitude’ towards euthanasia in Europe, specifically mentioning the Netherlands and Belgium. This is completely untrue. Because it’s easy to make a simple blooper during a presentation, we’ll put aside the fact that he meant to refer to a completely different organisation: the Council of Europe.

We know this because he read directly from Council of Europe declaration 1859 (Council of Europe Parliamentary Assembly 2012). His ACL submission (Australian Christian Lobby 2015) reports (as he read out) exactly one sentence of the declaration, with his added emphasis, as:

"Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited."

But presented in this manner the statement is quite misleading. As I explain in a forensic analysis of the misinformation campaign about this resolution (Francis 2015), the resolution was utterly clear about its intent: it was not about euthanasia (it explicitly said so), but rather about advance care planning. What the resolution spoke against (in the one sentence conveyed above) is non-voluntary euthanasia, not voluntary euthanasia. Both sides of the assisted dying debate agree that non-voluntary euthanasia (one person deciding for a hastened death on behalf of another) is not acceptable. It is not contentious.

In no way did the Council of Europe's resolution critique voluntary euthanasia or comment on any jurisdiction in which it is legal. And, the United Nations source to which the ACL submission refers was released in 2001, fourteen years ago and at the time of the Netherlands' Euthanasia Act was before the Dutch Parliament. With then limited information about how such laws work in practice, it expressed concern about the upcoming Act.

Wrong about Belgium’s law and practice

Mr Flynn referred vaguely to two cases of euthanasia in Belgium in which persons who requested and received euthanasia were not experiencing intolerable pain, which Mr Flynn asserted was a required safeguard in Belgium’s euthanasia Act. This was another supposed example of transgression of safeguards.  Wrong again.

While the Belgian Euthanasia Act is officially published only in Dutch and French, a robust English translation has been prepared under the supervision of Professor Herman Nys of the Centre for Biomedical Ethics and Law at the Catholic University of Leuven (see Parliament of Belgium 2002). The word ‘pain’ does not appear in the Act… at all. What does the Act have to say about the legislature’s intent on who may qualify? The relevant clause in Section 1 says:

"the patient is in a medically futile condition of constant and unbearable physical or mental suffering that can not be alleviated, resulting from a serious and incurable disorder caused by illness or accident."

It’s abundantly clear: mental suffering from an illness or accident qualifies as much as physical suffering, and the suffering does not need to be ‘pain’ as Mr Flynn mistakenly asserted to the Parliamentary Committee.

Mr Flynn also stated that there are mobile end-of-life units in Belgium. There aren’t. (But there are in the Netherlands, and they must follow precisely all the same requirements as anyone else. They operate to provide choice to patients whose regular or reachable doctors disagree with assisted dying and therefore decline to evaluate whether the patient may qualify under the Act.)

Confused about Advance Care Directives

In further testimony, Mr Flynn opined that the degree to which a doctor should be allowed to override a patient’s Advance Care Directive (ACD) is in part influenced by whether the doctor can speak with the patient.

But if the patient can currently speak and participate in decision-making, the advance care directive doesn’t apply: it is mute and of no effect. An ACD only applies when the patient cannot currently participate in their own decision making. That’s (only) what it’s for.

Winding rights back more than a quarter century

But the most worrying aspect Mr Flynn’s testimony was the revelation of ACL’s opposition to the right to refuse unwanted medical treatment.

The Medical Treatment Act 1998 (Vic) has enshrined for now more than twenty five years a patient’s right to refuse any unwanted medical treatments. In 2003 the Supreme Court of Victoria determined that artificial nutrition and hydration (i.e. via tubes) is medical treatment and can therefore be refused under the Act.

But Mr Flynn repeatedly argued that withholding or withdrawing artificial nutrition and hydration, if the patient’s body could ‘absorb’ them, could amount to physician-assisted suicide, and that doctors must be allowed to override refusals. On the matter of patient autonomy, he said that some autonomy rests "with the patients, but a lot of the autonomy in fact is with the doctor”.

When asked if a Jehovah's Witness who refuses a life-saving and simple blood transfusion ought to be allowed to do so, he conceded that they should be entitled to, but that such a case was a “bit of an outlier”. He didn’t explain on what moral grounds one person could refuse a simple procedure to save their life, but another person mustn’t be allowed to even if the likelihood of saving life was doubtful.              

So, the ACL’s real agenda is revealed: it recommends winding back the legislative clock more than a quarter century so as to force patients to endure some medical interventions that they don’t want and firmly refuse, if the doctor wishes to proceed.

No wonder the Committee repeatedly questioned Mr Flynn to ensure they had heard and understood his testimony correctly. In conclusion, Committee Chair Edward O’Donohue observed that Mr Flynn’s evidence was “quite surprising” and “quite contrary” to wide evidence already given.

And it’s no wonder that Theo Mackaay, General Secretary of the Victorian Council of Churches—a group of 30 member churches representing mainstream Christianity—criticised the ACL as “fundamentally conservative” and expressed “deep concern that media portrayal of statements from an established and narrow focused lobby group is presented as being representative of the entire Christian community” (Uniting Church in Australia 2011).

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References

Australian Christian Lobby 2015, Submission to the Legal and Social Issues Committee on the Inquiry inito End of Life Choices, Parliament of Victoria, Melbourne, pp. 1-17.

Council of Europe Parliamentary Assembly 2012, Resolution 1859 (2012): Protecting human rights and dignity by taking into account previously expressed wishes of patients, Europe, 25 Jan, pp. 2.

Francis, N 2012, Australian public desire for legalisation of assisted dying in restricted circumstances, YourLastRight.com, Melbourne, pp. 11.

Francis, N 2015, Conservatives fudge Council of Europe declaration 1859, DyingForChoice.com, viewed 2 Jun 2015, <http://www.dyingforchoice.com/f-files/conservatives-fudge-council-europe-declaration-1859>.

Parliament of Belgium 2002, 'The Belgian Act on Euthanasia of May 28th 2002 (unofficial English translation)', Ethical Perspectives, vol. 9, no. 2-3, pp. 182-188.

Stayner, G 2014, Victorian election 2014: Electorate overwhelmingly back voluntary euthanasia, Vote Compass reveals, ABC News, viewed 4 Dec 2014, <http://www.abc.net.au/news/2014-11-23/victorians-back-voluntary-euthanasia-vote-compass/5910668>.

Uniting Church in Australia 2011, Australian Christian Lobby does not represent all Australian Christians, nor all Christian viewpoints, 8 Dec, Media Room, viewed 11 Dec 2011, <http://blogs.victas.uca.org.au/mediaroom/?p=971>.


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