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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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Jeanne Smits' completely false statement in LifeSiteNews

Well it didn't take long. Recently I posted a fact-based report card on Dutch euthanasia practice, based on the actual data from the 2015 annual report (and all the earlier reports) of the Dutch Euthanasia Commission. Now, just a few days later, conservative religious opponents have begun publishing completely untrue statements about Dutch euthanasia practice.

Catholic blog LifeSiteNews' 'Paris correspondent' Jeanne Smits has bolted out of the misinformation blocks, assertively and categorically stating in respect of the small increase in number of euthanasia cases from 2014 to 2015, that:

"The rise is mainly due to the increase of euthanasia for demented, elderly people as well as psychiatric patients, two categories that raise even more questions than 'ordinary' euthanasia for untreatable physical pain."

Smits goes on to correctly report that dementia was an underlying factor in 109 of the cases in 2015 (against 81 in 2014) and psychiatric disorders in 56 patients (against 41 in 2014).

The total number of euthanasia cases increased from 5306 in 2014 to 5516 in 2015, an increase of 210 cases. The increase in dementia cases was 28 and in psychiatric disorders was 15. Therefore, underlying dementia accounted for 13% of the increase, and psychiatric disorders 7% of the increase.

Cherry-picking

Smits has cherry-picked just the dementia and psychiatric illness figures and presented them in a way that supports her story arc, painting a bleak picture.

But by no stretch of the imagination does dementia and psychiatric illness account "mainly" for the increase as she categorically states.

What didn't Smits report at all? Cancer: the Netherlands' leading cause of death. In 2015, cancer was the underlying condition in 4000 euthanasia cases, against 3888 in 2014, a rise of 112 cases or 53% of the increase. That compares with dementia at 13% and psychiatric illness at 7% (20% combined), which Smits selectively critiques as a 'sharp rise'.

In no way is Smits' statement true.

No, let's be frank: it's an outright lie. Cancer was the major underlying condition accounting for more than half of the small increase (4%) of cases in 2015.

More evidence refutes the claim

Comparing one years' data with just the preceding years' data can be misleading when the number of observations is low, as it is for dementia and psychiatric illness euthanasia cases. Fortunately, we have data for more than just the one year.

Since 2012 the Euthanasia Commission has consistently published specific figures for dementia and psychiatric illness cases, so we can compare a rise over four years rather than just one. On this basis as a proportion of total 2012 cases, there has been a 17.9% increase in cancer-related cases, a 1.6% increase in dementia cases, and a 1.0% increase in psychiatric illness cases.

Longitudinal data is even more clear than a single year. It unequivocally refutes Smits' silly claim.

Bull is spread

Does Smits' claim matter much? Won't it just slip into oblivion?

No. Michael Haverluck of the conservative Christian paper OneNewsNow has already picked up Smits' article and repeated her claim as gospel. It remains to be seen how many other anti-euthanasia bloggers republish this nonsense.

Unacceptable conduct

In my view, publishing such a categorical yet false statement — even when unintentional — without first properly checking the facts, is unacceptable conduct. The article (and its derivatives) ought to be withdrawn.


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In 2002 the Dutch Euthanasia Act came into effect. Commencing in 2003, the Netherlands Euthanasia Commission has published annual reports of deaths that occur under the Act. It has just published its annual report for the calendar year 2015. The data shows that the Euthanasia Act is working as the Dutch Parliament intended.

Number of assisted death cases

There were 5,516 reported cases of assisted dying in 2015, with 208 cases of patient self-administration and 5,277 cases of doctor administration. This is an overall increase of 4.0% on the 2014 figures (5,306 total cases). Assisted deaths represented 3.9% of all Dutch deaths in 2015.

Trend in assisted dying numbers

Comment has been made in past years about the rate of increase of assisted deaths in the Netherlands. The trend in number of cases of this nature was always likely to be an 'S'-shaped curve, a trend which the 2015 data supports as the annual increases level off (Figure 1) at a small percentage of all deaths.

S-curved assisted dying rateFigure 1: Netherlands assisted dying deaths as a percentage of all deaths

Note: The Netherlands total deaths count for 2015 is not yet published: its value was estimated by extrapolation from previous years.

Figure 2 shows the year-on-year rate of change of assisted dying including a second-order polynomial best-fit trend line which illustrates that the rate of increase has slowed and the overall rate is leveling out.

Netherlands assisted dying rate trendFigure 2: Year-on-year change in the proportion of assisted dying cases

Underlying health conditions

Cancer is by far the greatest underlying health problem affecting those who choose assisted dying in the Netherlands (Figure 3). This is unsurprising since cancer is now the leading cause of death in the Netherlands, accounting for 30% of all deaths.

Netherlands assisetd dying -- underlying illnessesFigure 3: Underlying illnesses of Dutch assisted dying cases (proportion of all deaths)

Notes: Neuro=neurodegenerative diseases, Mental=mental illnesses other than dementia, Multi=multi-functional old-age decline, Other=all other illness types

While cancer accounts for the greatest numeric increase in reported assisted dying cases, other illnesses are increasing as a proportion of cases (Figure 4). Cardiopulmonary illness now underlies around 8% of cases (cardiac pathology is the second leading cause of death in the Netherlands) and neurodegenerative disease around 6% of cases.

Netherlands assisted dying -- Underlying illness proportionsFigure 4: Underlying illnesses of Dutch assisted dying cases (proportion of illnesses)

Multi-functional old-age decline underlies around 3-4% of cases. Untreatable mental illness is a rare health factor in Dutch assisted dying, with dementia present in 1 in 50 assisted deaths (2%) and other mental illness in 1 in 100 deaths (1%) .

Where assistance was rendered

Around 88% of Dutch people would prefer to die in their own home or similar care home, 10% in hospice and around 2% in hospital (Abarshi et al 2009). Those using assisted dying largely achieve these goals (Figure 5).

Netherlands assisted dying -- place of deathFigure 5: Assisted dying place of death (proportion of assisted deaths)

Around 80% of assisted deaths occur in the patient's own home. Since the Euthanasia Act came into effect, the proportion of deaths occurring in hospices and in relative's homes ("other") increased from around 2.5% to 8% (an approximately 5.5% rise), and the proportion of deaths occurring in hospitals decreased from around 11% to 3.5% (an approximately 7.5% drop). There was a slight increase of less than 2% in the proportion of assisted deaths in residential care settings, and no increase in nursing home settings.

The data confirms that assisted dying patients are usually dying in their preferred location and that 'institutionalisation,' particularly in nursing homes, is not a risk factor for assisted dying as is sometimes claimed. The greatest change in place of death since the Euthanasia Act came into effect is a decrease in hospital deaths and a complimentary increase in hospice care deaths, reflecting good palliative care practice.

Standard of practice

Of the 5,526 assisted dying cases reported in 2015, 4 were judged by the Euthanasia Committees as not meeting all necessary due care criteria: a compliance rate of 99.93% and non-compliance rate of 0.07%.

Summary

  • The 5,516 Dutch assisted dying cases for 2015 represents an increase of 4% on 2014 cases, and 3.9% of all Dutch deaths in 2015.
  • The rate of increase has slowed in line with expectations.
  • The great majority of cases involve cancer, the Netherlands' leading cause of death.
  • Assisted dying under other medical conditions is uncommon or rare.
  • Assisted dying usually occurs where the patient prefers, most often in their own home.
  • Assisted dying has decreased in hospitals and commensurately increased in hospices, in line with good palliative care practice.
  • The rate of compliance with all legal requirements in 2015 was 99.93%.

 
Some commentators have criticised the numbers of Dutch using the Euthanasia Act even though the rate remains a very small proportion of all deaths (3.9%). The question, however, is not 'how many', but whether these cases represent the contexts and circumstances the legislature had in mind when crafting the Euthanasia Act, which stipulates a raft of conditions and processes. It is clear that the legislature's intent has been upheld.
 

References

Abarshi, E, Onwuteaka-Philipsen, B, Donker, G, Echteld, M, Van den Block, L & Deliens, L 2009, 'General practitioner awareness of preferred place of death and correlates of dying in a preferred place: a nationwide mortality follow-back study in the Netherlands', Journal of Pain and Symptom Management, vol. 38, no. 4, pp. 568-77.

Regional Euthansia Review Committees (Netherlands) 2015, Annual report 2015, Arnhem, pp. 81.

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Lyle Shelton's bunkum tweet is broadcast on ABC's Q&A program

The Managing Director of the Australian Christian Lobby, Mr Lyle Shelton, is at it again.

Yesterday, he tweeted ABC's Q&A program as thousands of people do while it is on air. His tweet was broadcast live to air as shown above. What did he say as panelists were discussing assisted dying law reform?

"Sadly voluntary euthanasia quickly became involuntary euthanasia in Holland. #qanda" LyleShelton

Mr Shelton's claim is bunkum.

Confused language

Firstly, he's confused involuntary with non-voluntary euthanasia.

Involuntary euthanasia is the deliberate hastening of the death of an individual in contravention of the express wishes to the contrary of that individual.  Nobody (except the Australian Christian Lobby in its confusion) is seriously suggesting that involuntary euthanasia happens in the Netherlands, even as a 'result' of the country's euthanasia law.

Non-voluntary euthanasia is the deliberate hastening of the death of an individual without an explicit request from that individual. Increased doses of analgesics and sedatives are administered to alleviate intractable symptoms at the end of life, as a result of discussion between doctors and the patient's family (the patient is not currently competent to participate in decisions). The drugs may hasten death and if this happens, life is shortened by hours, or less often, days. Despite claims by some assisted dying opponents that this is unique to the Netherlands, scientific research shows clearly that the practice occurs all over the world and is not 'caused' by voluntary euthanasia laws.

ACL staff sing from the same hymn book

Daniel Flynn, Victorian Director of the Australian Christian Lobby, made a similar claim in a formal submission (#694) to the Victorian Parliament's Inquiry into End Of Life Choices:

"There is sufficient evidence to suggest that involuntary euthanasia is frequent in jurisdictions in which euthanasia has been legalised." [p 4.]

Not a shred—let alone 'sufficient'—evidence was offered to back up this silly myth, though it's hardly surprising given that there isn't any.

What does the evidence actually show?

The scientific evidence is crystal clear and it is the opposite of Lyle Shelton and the Australian Christian Lobby's claim. Since around 1985 the Netherlands had permitted assisted dying by regulation: under agreement amongst relevant authorities. The rate of non-voluntary euthanasia remained relatively unchanged under this arrangement (Figure 1). In 2002 the Netherlands' euthanasia Act came into effect, replacing regulatory arrangements with a comprehensive set of legislative (i.e. statutory) requirements.

 

dutchanduk-nve01.jpg
Figure 1: Netherlands and UK non-voluntary euthanasia rates

Since 2002, the rate of non-voluntary euthanasia in the Netherlands has dropped, not risen.1 The drop is statistically significant. The rate of non-voluntary euthanasia in the Netherlands is now around the same level as in the United Kingdom.2 The UK is generally accepted as the world's gold standard in palliative care practice and it does not have an assisted dying law.

Absolutely contrary to the claim of the Australian Christian Lobby's Lyle Shelton, the rate of non-voluntary euthanasia in the Netherlands has dropped, not risen. It's now similar to the rate in the UK, which has no assisted dying law.

ABC news standards

Since the ABC moved the Q&A program from its entertainment division to its news division there is a heighted obligation on the broadcaster to ensure that the show's content is reason- and evidence-based, and not merely a platform for anyone to promote silly misinformation in support of a perspective.

No doubt the ABC will rise suitably to the occasion of discouraging misinformation and ensuring that any is corrected.

We'll be watching the next episode of ABC Q&A closely to fact check anything Mr Shelton and others say about assisted dying law reform. Give us a bell if you spot anything you know or suspect is untrue.

---------------

  1. 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.
  2. Seale, C 2009, 'End-of-life decisions in the UK involving medical practitioners', Palliative Medicine, vol. 23, no. 3, pp. 198-204.

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One of the articles wrongly claiming 650 Dutch babies euthanized

Opponents of assisted dying have fallen prey to misinformation contagion about the Dutch Groningen Protocol, claiming that 650 babies would be or are euthanized every year. The claim is comprehensively and evidentially false.

Starting in 2013 and increasing in shrillness in 2015, numerous opponents of assisted dying law reform—many of whom are connected to conservative (Christian) sources—published online articles making false claims about the Dutch Groningen Protocol, wrongly claiming that up to 650 babies could be, would be or actually are ‘euthanized,’ ‘killed’ or ‘murdered’ every year under the Protocol’s provisions.

I provide a forensic analysis of the claim, demonstrating it to be comprehensively and evidentially false, in the latest edition of the Journal of Assisted Dying.

 

What is the Groningen Protocol?

  • A national Dutch Regulation (not statute) effective since late 2006 whose current name is so long that it remains convenient to use its old name, ‘Groningen Protocol,’ even though it has changed.
  • Permits, only as a last resort and with a number of strict conditions, the intentional ending of a newborn’s life when the newborn is in current (not merely anticipated) untreatable and unrelievable extremis.
  • Mandatory reporting of intentionally hastened deaths to a national Commission and the Board of Prosecutors General at The Hague.
  • Physician is not cleared until the case is deemed acceptable by the Commission and the Board and the Minister of Security and Justice.
  • The Regulation is entirely separate from and unrelated to the Dutch Euthanasia Act for competent adults.

Where did the '650 babies euthanized' claim come from?

In 2013 the Royal Dutch Medical Association (KNMG) published a media release that launched a major policy paper about end-of-life decisions for neonates. The media release stated that of the approximately 175,000 births in the Netherlands each year, around 650 newborns will die as a result of severe congenital defects.

Some of these babies die soon after birth, in the delivery room. Others die later in neonatal intensive care despite the best interventions attempting to keep them alive. Yet others die after futile treatment is withdrawn and palliative (comfort) care is administered to minimize suffering prior to death.

Only in a tiny minority of cases is there a medical intervention with an explicit intention to hasten the death of the newborn, who is in untreatable and unrelievable extremis.

Despite this clarity, opponents—mostly linked to conservative religious sources—jumped on the misinformation bandwagon and trumpeted that 650 babies either could be or would be or are actually ‘euthanized,’ ‘killed’ or ‘murdered’ every year in the Netherlands.

What's the actual evidence?

  • Neonatal euthanasia occurs around the world regardless of prohibition and is not caused by a protocol or regulation
    • For example, the rate in France, with no regulation, is much higher than the Netherlands.
  • Intentional hastening of neonatal death in the Netherlands is rare
    • Most neonatal deaths occur either quickly with no medical intervention, or intensive treatment proves futile and palliative (comfort) care is administered until death.
  • The (Groningen) Regulation has been further restricted since it was first formulated
    • It has not been 'relaxed' as claimed by some opponents.
  • The Regulation is separate from and completely unrelated to the Netherlands' Euthanasia Act
    • The Euthanasia Act is only for mentally competent adults (and 12-16 year olds with parental agreement).
  • Physicians do not receive black-letter law protection as they do under the Euthanasia Act
    • Reporting, investigation and acceptance requirements are even more rigorous than under the Euthanasia Act.
  • The rate of intention to hasten neonatal death has decreased since the Regulation came into effect
    • In eight years prior to Regulation there were twenty two reported cases, and only two in eight years since Regulation.
    • The rate of medical end-of-life decisions with an explicit intention to hasten death was 8–9% prior to Regulation, dropping to 1% after Regulation.
    • The use of neuromuscular blockers has decreased.
  • Physicians report improved communication with parents
    • Shared decision-making and better opportunities for parents to grieve the loss of their child.
  • There are clear explanations for the decrease in neonatal euthanasia in the Netherlands:
    • Physicians report they are fearful of prosecution under the Regulation, so they now more often administer palliative care not intended to hasten death.
    • A folate supplementation program for pregnant females has resulted in a substantial drop in the rate of spina bifida and related disorders.
    • An antenatal screening program at 20 weeks has resulted in a higher rate of pregnancy terminations for major congenital disorders.

In conclusion

Despite all these facts, in an epidemic of 'confirmation bias' that drove misinformation contagion, many anti-euthanasia commentators have published false claims about '650 babies euthanized' under the Dutch Groningen Protocol. I provide a forensic examination of the issue in the latest edition of the Journal of Assisted Dying.

This is not the first example of how opponents of assisted dying widely circulate information that is untrue (e.g. check out the Council of Europe Declaration 1859 case), and it won't be the last. However, for opponents of assisted dying to avoid egg on face, I'd recommend:

Best not to engage in
misinformation contagion.

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Neonatal deaths under Dutch Groningen Protocol very rare despite misinformation contagion


Author(s)

Neil Francis

Journal

Journal of Assisted Dying, vol. 1, no. 1, pp. 7–19.

Abstract

The Groningen Protocol specifies criteria for the potential termination of life in severely ill newborns in extremis with untreatable and unrelievable conditions. In September 2006 the Netherlands formally adopted a Regulation incorporating the Protocol. Despite the Regulation’s development through extensive professional consultation, endorsement by the Dutch Paediatric Association, empirical data showing a decrease rather than increase in use, and research showing that neonatal euthanasia occurs around the world in the absence of regulation, the Dutch Regulation has sparked controversy. More recently it has been claimed that hundreds of babies a year are killed under its provisions. Forensic analysis reveals the claim to be comprehensively and evidentially false. Wide online dissemination of the claim by mostly religious sources demonstrates confirmation bias and misinformation contagion.

Article keywords

Netherlands, Groningen Protocol, neonatal euthanasia, palliative sedation, neuromuscular blocker, non-treatment decision, confirmation bias, misinformation contagion, religion

Full PDF

Download the full PDF: Download the full article (230Kb)

Citation

Francis, N 2016, 'Neonatal deaths under Dutch Groningen Protocol very rare despite misinformation contagion', Journal of Assisted Dying, vol. 1, no. 1, pp. 7-19.

Download the citation in RIS format: RIS.gif


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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.

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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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