Legislation

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Which doctors 'play God' most with patient end of life decisions might surprise you

In two supplementary submissions to the Parliament of Western Australia, I report empirical evidence about the standards of end-of-life medical decision making in jurisdictions with and without voluntary assisted dying (VAD) laws. The evidence clearly contradicts the assumption of assisted dying opponents that legalised VAD will lead to worse end-of-life decision making by physicians. In fact, the evidence clearly shows which physicians are 'playing God' with their patients, and it's not the Dutch.

When I appeared as an expert witness before the Parliament of Western Australia's Joint Select Committee on end of life choices, the Hon. Nick Goiran, a staunch Catholic opponent of VAD, asked me for evidence of bringing end of life decision making out of the 'dark shadows' and into the light in jurisdictions in which VAD is lawful.

Existing evidence

Of course, there's the clear evidence from both the Netherlands and Belgium that the rate of non-voluntary euthanasia (NVE) has dropped significantly and stayed lower after their Euthanasia Acts each came into effect in 2002. There's also the clear evidence that the rate of nurse administration of possible life-ending drugs has dropped significantly in Belgium with a VAD law, over a similar time period in which it had increased significantly in New Zealand, where there is no VAD law. These forms of evidence were already documented in the comprehensive submission (PDF 5.4Mb) I'd made to the Committee.

Training and decision making has improved (Supplementary 1)

Mr Goiran opined that any improvements in palliative care were not relevant to his question. In my first supplementary submission to the Committe (PDF 0.6Mb) to further inform it of the empirical evidence, I disagree. As I point out, VAD decisions are not made in a vacuum: they are made after other interventions have been considered and declined, or tried and failed to provide sufficient relief. Palliative care options are central to these considerations. Therefore, whether palliative care improves or deteriorates after VAD laws are introduced is crucial.

Adding to the body of knowledge about the quality of palliative care, in this first supplementary submission I report that Dutch and Belgian physicians attended palliative care professional training at vastly higher rates than most other countries in the several years after VAD was legislated.

I also report the research evidence showing increases in desirable end of life decision rates, and decreases in undesirable decision rates in both the Netherlands and Belgium.

Where decision making is best and worst (Supplementary 2)

In my second supplementary submission (PDF 0.2Mb), I report data from two careful scientific studies into end of life decision making by doctors across multiple countries, including the Netherlands, Belgium, Switzerland, Italy and Australia.

The results are striking: for clearly inappropriate decisions such as withholding chemotherapy or administering terminal sedation without consulting their mentally competent patient, the Netherlands was clearly the best performer with the lowest rates of these kinds of decisions amongst physicians. And who was the overall worst? Italy.

Yes, that jurisdiction that harbours the head office of the world's most actively VAD-opposing organisation, the Catholic church, and where 82% of physicians are Catholic, were by far the most likely overall to make medical end of life decisions about their mentally-competent patients without consulting either the patient or her family. Italian physicians were, respectively, more than five times, three times, and twice as likely as those from the Netherlands, Beligum or Switzerland, to make unilateral end of life decisions without consulting either the patient or her family.

So much for high moral standards under a more religiously-driven and VAD-opposing regime.

I also illustrate from another study how VAD decision making in the Flemish north of Belgium, where the rate of VAD deaths is higher, is significantly higher in quality than in the Walloon south.

Conclusion

The peer-reviewed research data currently available consistently and directly demonstrate improvements in end of life care education and decision making in jurisdictions with VAD compared with those that don't. In contradiction to VAD opponents' assumptions, it's Italian physicians — who largely oppose VAD — who tend to 'play God' most with their patients.

The evidence comprehensively supports the view that legalisation of VAD brings a wide range of end of life decision making out of the shadows and into the light, where critical and open appraisal results in significant improvements.


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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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The Canadian Parliament has passed a law that allows the terminally ill to choose assisted dying in restricted circumstances.

The Parliament of Canada has legalised assisted dying. (Photo: Jeffery Nichols)

The Parliament of Canada has legalised assisted dying. (Photo: Jeffery Nichols)

 

The historic law was passed this Friday and allows a dying patient to opt for assisted dying within specific limitations:

  • The patient must —
    • be 18 or older;
    • be mentally competent;
    • be eligible for government-funded healthcare (at the same time as ensuring the patient has access to appropriate care, this prevents non-residents from accessing the law);
    • Have a serious, incurable illness or condition in an advanced state of irreversible decline; and
    • Be experiencing intolerable suffering.
  • The patient's request must be signed by two independent witnesses.
  • There is a mandatory cooling off period of fifteen days.

 
Canadian Prime Minister Justin Trudeau supported the legislation.

Jody Wilson-Raybould, Miniter for Justice, issued a statement with the Attorney General and Minister of Health, saying that the legislation as passed "strikes the right balance between personal autonomy for those seeking access to medically assisted dying and protecting the vulnerable."

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In this thirteen minute video, Oregonians share their experiences of the State's Death With Dignity Act, in effect since 1997. How the Act has worked successfully is described from the medical, palliative care, patient advocate, hospice, legislator and other perspectives, including the daughter of an individual who used the Act.

Part 1 covers attitudes and apprenehsions prior to the Act coming into effect.

Part 2 (2'05") reveals how patient-family-doctor conversations have improved immensely since the Act came into effect.

Part 3 (4'25") discusses the modest numbers of patients using the Act, and that many more Oregonians achieve peace of mind knowing they have a choice even if they don't use it.

Part 4 (7'30") describes how people are free to participate or not, that it is not the 'vulnerable and disenfranchised' who use the Act, and that only minor changes have been made to the Act in order to clarify certain matters, such as residency status.

Part 5 (10"50') concludes with opponents acknowledging there's no evidence for their claim that the Act has caused a 'slippery slope' effect, and State leaders clarifying that the Act has worked as intended, with positive outcomes for the people of Oregon.

Visit the YouTube page.

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