Euthanasia: think hard. There's no going back

Today the Parliament of New South Wales begins its debate on Alex Greenwich’s bill to legalise euthanasia. The outcome will be historic for two reasons.

The first is the most obvious. It authorises private citizens to kill other citizens with almost no judicial oversight. The results of this are unpredictable and dangerous.

The second is that there will be no second chance. In no jurisdiction (except the Northern Territory in 1997) has “voluntary assisted dying” (VAD) legislation been repealed. Immediately upon legalisation, a VAD bureaucracy springs up; specialist doctors form professional groups; VAD becomes normalised in the media; and lobby groups become entrenched and powerful.

Here are seven issues for MPs to consider, each supported by links to articles published in BioEdge, a bioethics newsletter which I have edited since 2001.  

The slippery slope is real. It just works slowly

Opponents of VAD dismiss “slippery slope” arguments as Chicken Little scare tactics. They might be right -- in the short run.  In the first 12 months after legalisation patients will not necessarily grow more despairing, their relatives will not necessarily grow greedier, their doctors will not necessarily become trigger-happy, and so on.

The danger is different – not that the Act will be abused but that the Act will evolve. The courts and Parliament will authorise, in a completely legal fashion, extensions and tweaks to the Act which will weaken or abolish the safeguards, in a legal and transparent fashion, as VAD becomes normalised. To change the metaphor, VAD is an expanding glacier.

The first nation to legalise VAD was the Netherlands in 2002. In particular, it authorized euthanasia for anyone over 12 years of age (although parents had to be involved for 12-16-year-olds). However, in 2004, the officially recognised Groningen Protocol permitted euthanasia of children under 12 months. In 2020 the Dutch government authorised euthanasia for children under 12.

In Canada VAD (or Medical Assistance in Dying) was legalised in June 2016. The enabling Act specified that only people with an illness for which death was “reasonably foreseeable” were eligible. A Quebec court found that this was discriminatory, forcing the Federal Parliament to amend the law to allow people with mental illness to request VAD. The Quebec parliament chose not to defend its own legislation.

In California the End of Life Options Act came into effect in 2016 with “stringent” safeguards. Earlier this year the Act was amended to reduce the waiting period between a first and second oral request from 15 days to 48 hours.

Experience from other countries shows that a combination of energetic VAD lobbyists and sympathetic judges will be constantly at work eroding the original safeguards.

Belgian euthanasia is broken, says academic study (BioEdge, January 31, 2021) 
Disabled groups attack liberalizing euthanasia in Canada (BioEdge, November 18, 2020)  
Doctors call for liberalisation of Victoria’s controversial euthanasia law  )BioEdge, Feb 8, 2020)     
Quebec to allow euthanasia for mental illness (BioEdge, January 26, 2020)  

Is VAD “quick and painless”?

Yes for most people and No for some people.

In Oregon, where statistics are gathered about the mode of death, the median time to death throughout the 23 years of the Act is 30 minutes -- but the maximum time was 4 days and 8 hours. The median time for people to fall unconscious is 5 minutes, the maximum is 6 hours.

Some of these deaths are “long, lingering and wrenching”. An Irish pharmacist stated bluntly in the BMJ, a leading international journal, in January that: “The process of assisted suicide and/or euthanasia cannot guarantee a peaceful, pain free, dignified death.”

The honest truth about “assisted dying” is this. Patients might die swiftly and painlessly. They might not. If it’s a game of roulette, is “assisted dying” really a compassionate option? Furthermore, what’s the point of changing the law so that a few cancer patients will escape a “long, lingering and wrenching” death at the expense of others who are going to experience it in the very process of assisted dying? 

How many “long, lingering and wrenching” deaths will there be? We may never know. No statistics will be kept on this and doctors are unlikely to report their mistakes.

Protracted ‘assisted dying’ in Colorado (BioEdge, October 30, 2021)   
‘Quick and painless death’: easier said than done  (BioEdge, October 30, 2021)  
Shuffling off this mortal coil is not always pleasant (BioEdge, March 6, 2021) 

Is the Greenwich bill managerially sound?

What can’t be measured can’t be managed. Section 176 of the bill mandates the collection of the underlying cause of death, the age of the patient, and whether the patient is from regional NSW. That’s all.

By contrast, the annual report for Oregon’s Death with Dignity Act collects anonymised data on sex, age, race, marital status, education, residence by county, end-of-life care, underlying illness, location of death, type of lethal medication, reasons for requesting VAD, whether a doctor was present, difficulties in taking the medication, the time between the request and death, how long it took for patients to become unconscious, and how long it took for them to die.

The Bill seems written to produce as little useful information about VAD in NSW as possible. That is very odd in a statistics-mad society. If statistics are not gathered, how will MPs know whether the legislation is working or not?

Most importantly, what will be the measure of the Bill’s success? It is being touted as an answer to the problem of intractable pain. But numerous studies have shown that pain is not the main reason that people seek VAD -- depression, hopelessness, being tired of life, loss of control and loss of dignity are.

Imagine a future in which no applicants for VAD in NSW are in pain because palliative care has improved so much. We would never know because no statistics are being gathered on what motivates people to seek VAD.

As currently framed, the measure of the success of the Greenwich Bill can only be a steady increase in the number of deaths. Is this what we want for the State?

Euthanasia is ‘sideshow’ in end-of-life care, says leading US bioethicist (BioEdge, Apr 27, 2017) 
Assisted suicide makes good economic sense, argue Scottish academics (BioEdge, Mar 14, 2020)

Secrecy is an inherent problem with VAD  

Go Gentle Australia and Dying with Dignity NSW claim that the “documentation and processes around VAD are regulated, transparent and subject to official scrutiny”. That is merely an aspirational goal. Experience in other jurisdictions has shown that the information gathered about VAD deaths is meagre, that a significant proportion of doctors fail to do the required paperwork, and that some doctors simply defy the law.

The career of the late Dr Rodney Syme is a cautionary tale. Between 1974 and 2017, when VAD was legalised in Victoria, he helped around 300 people to die – all illegally and secretly. Yet he is being hailed as a hero by Andrew Denton, of Go Gentle Australia. “The mighty oak has fallen. There seems a vast, empty space in the forest where he once stood. That familiar, comforting shadow no longer cast.”

If transparency and regulation are paramount, canonising Rodney Syme is a very bad start.

Overseas, Belgium and the Netherlands have very liberal euthanasia laws. Yet studies have shown that half of the cases in Flanders (the Dutch-speaking region of Belgium) go unreported to the authorities. In the Netherlands the figure appears to be about 20%.

Will doctors in NSW be different? Probably not if Alex Greenwich’s bill succeeds: doctors will be forced to lie when they sign the death certificate, registering the underlying illness as the cause of death rather than the lethal medication.

Safeguards, no matter how numerous or rigorous, are impotent unless all doctors report conscientiously.

Prominent Australian assisted suicide campaigner dies  (BioEdge, October 28, 2021)    
Only half of Belgium’s euthanasia cases are reported (BioEdge, October 15, 2010)   
New study casts doubt on effectiveness of Dutch euthanasia regulation (BioEdge, Nov 4, 2017)

Can a decision to die be “autonomous”?

Studies consistently show that pain is not the main reason that people choose VAD. In Oregon, which gathers this data, “losing autonomy” was the reason that 93.1% of people chose VAD. Only 32.7% mentioned “Inadequate pain control, or concern about it”.

One of the principal arguments deployed by Dying with Dignity NSW and Go Gentle Australia is that VAD gives people autonomy.

Discussions about autonomy lead us quickly into deep philosophical waters. But they have very practical consequences. A number of recent studies question whether an autonomous decision to stop being autonomous by dying is really possible. As an ethicist writing in the BMJ, one of the world’s leading medical journals, stated recently: “The wish to die arises against a backdrop: of desperation, a feeling of hopelessness, possibly a feeling of being superfluous. Otherwise, the wish would not be there.”

It is highly significant that 53.7% of Oregonians who requested VAD cited being a “Burden on family, friends/caregivers” as a reason.

Can ‘assisted dying’ ever be fully autonomous? (BioEdge, October 30, 2021)     
Danish ethicist opposes euthanasia in BMJ (BioEdge, September 11, 2021)
What factors can undermine our autonomy? (BioEdge, October 24, 2020) 
UN official criticizes ‘liberal eugenics’ (BioEdge, April 18, 2020)
More Ubuntu, less autonomy, says South African bioethicist (BioEdge, May 13, 2017)

Who benefits from VAD?

VAD is an anomaly in the era of Black Lives Matter and identity politics. Indigenous people and people of colour hardly play a role in the assisted dying movement. The story wall of Go Gentle Australia contains more than 200 stories. Only one Asian face appears. There do not appear to be any indigenous people.

This matches the experience in other jurisdictions. In California, where statistics are kept on the “race” of people who die under the End of Life Options Act, 87.4% of the people who died in 2020 were white and 0.9% were black. But whites make up only about 36% of the state’s population and blacks 6%. The disparity is even greater for Latinos: they make up 39% of the state’s population but only 3.4% of the people who died under the act. Nearly 60% of the people who died in California have degrees – far above the state average of about 40%.

In short, VAD in California is for well-educated white people. And it is shaping up to be the same in Australia.

In Western Australia the two most prominent Aboriginal politicians in the country, Pat Dodson and Ken Wyatt, have opposed VAD. "The evident lack of public commentary on Aboriginal self-determination surrounding this bill concerns me, because it fails to recognise Aboriginal ideas on civil society or other concerns with its quality," Senator Dodson said.

In short, the MPs should not feel that VAD is a burning social justice issue. Its impact on Indigenous and minority populations needs to be investigated thoroughly. 

Euthanasia leaves Aboriginal Australians even more vulnerable. (BioEdge, October 3, 2021)   Indigenous Canadians fear impending euthanasia law. (BioEdge, April 30, 2016)

The unmentionable fellow travellers of the VAD movement

Dying with Dignity NSW describes Alex Greenwich’s bill as a conservative model with strong safeguards. Access is limited to people with a terminal illness.

However, the experience from other jurisdictions is that under the umbrella of the right-to-die movement are people who reject this “conservative model” and will work hard to advance a universal human right to suicide for any reason.

The most prominent Australian representative of this approach is the notorious Dr Philip Nitschke. He and his organization, Exit International, believe that no one should be barred from “rational suicide” because they are too young, because they have a mental illness, or even because they are in prison.

Because right-to-die fundamentalists believe that all legal restrictions are immoral, their underground activity does not cease after legislation. It probably increases. In the Netherlands, where euthanasia has been legal since 2002, several members of an organization called Last Wish Cooperative were arrested recently for selling suicide powder to anyone who asked for it.

An unintended consequence of passing Mr Greenwich’s bill will be an increase in the number of right-to-die fundamentalists who will continue to defy the law.

Euthanasia fundamentalists in Netherlands selling ‘Mittel X’. (BioEdge, Oct 30, 2021)   
Nitschke designs new euthanasia machine with detachable coffin. (BioEdge, Nov 18, 2017)
On a mission from FEN: assisted dying outside the law. (BioEdge, June 2, 2019)


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