Tag Archives: life ending acts without explicit request

A Lack of Willingness to Endure – Dr Megan Best on Voluntary Assisted Dying

Life Summit is an event convened each year by Life Church, a pentecostal church in Brisbane. This month (September 2021) a guest speaker was Associate Professor Megan Best, a Research Associate with the Institute for Ethics and Society at the (Catholic) University of Notre Dame, Australia.

Dr Best, a palliative care doctor and medical ethicist, spoke on the topic of voluntary assisted dying. Her address to the Life Summit was live-streamed, which gave me the opportunity to access (and critique) Dr Best’s speech. Dr Best is an outspoken critic of voluntary assisted dying. She has worked as a palliative physician at Greenwich Hospital in NSW and is a board member of Spiritual Care, Australia. She has written previously about her view that those of us who don’t wish to suffer at the end of life simply don’t realise the spiritual benefits of suffering:

“For the Christian, suffering lies within the sphere of God’s sovereign rule as the creator and governor of our world. Indeed, the presence of sickness, decay and death is the result of his judgement on our rebellious world. In other words, although (like nearly everyone) Christians do not wish to suffer and do not enjoy suffering, we know that we experience suffering under the sovereign rule of God. Thus, suffering can function as God’s loving discipline designed to correct our ways.

… Sometimes suffering is a direct consequence of our sin … We are told that suffering can be for our good even when we don’t understand it.

… [We] acknowledge that if suffering is to be our experience then good will also emerge from it within the plans of God. We also know that suffering will be temporary and, from an eternal perspective, brief.

But the individualistic, secular public isn’t interested in the spiritual benefits of suffering, or in considering whether there might be a higher good than simply avoiding suffering at all costs.

We find ourselves, then, at an impasse. Christians accept that some degree of illness and disability is inevitable in a fallen world, while the secular community is determined to conquer illness and disability at any cost.”

Now you have some idea of Dr Best’s position, let’s look at some of the arguments she made in her address to Life Church.

Period of Eligibility

Dr Best complains that:

“… laws around Australia, and those proposed for New South Wales, allow euthanasia six or 12 months before death is expected. Now, no one is actively dying when they have an expected six months to live.”

But, she does not explain (and she would know this) that the laws take into account the fact that getting assessed for VAD takes time – particularly for people in regional areas. Nor does she explain (and she would know this), that receiving a prescription for the lethal medication doesn’t mean that you immediately (or ever) have that script filled, nor that you immediately take the medication. The eligibility time period accounts for the fact that terminally ill people may have:

  • limited energy resources,
  • difficulty accessing doctors willing to assist them with their application,
  • live in remote or regional areas, and
  • may have to overcome obstacles like obstructive hospitals or palliative care facilities.

It also recognises the palliative effect of providing people with a sense of control in that last 6-12 months of their lives. A patient approved for VAD may never take the drug, but knowing they can, if they need it, can provide tremendous comfort.

Lack of Palliative Care

Dr Best suggests that people are forced to choose VAD because of a lack of palliative care:

“We know that half the people who would benefit from palliative care currently have access to it. Is this a path we want to take in New South Wales, putting our sick in a position when they have to choose euthanasia?”

There’s no doubt we need better palliative care in this country – particularly in regional areas. But, here’s the thing. The latest statistics from Victoria show that of those who applied for VAD in the period 19 June 2019 to 30 June 2021, 82.2% (740) were currently receiving palliative care, while a further 1.6 per cent (14) had previously received palliative care.

As the official Victorian Government report says:

“It demonstrates that most applicants applying for voluntary assisted dying are currently accessing palliative care services while completing the voluntary assisted dying application process.”

The same argument was made in the United States, yet we see similar figures (from 2018) there. 90.9 per cent of Oregonians and 88 per cent of applicants from Washington State who used their states’ Death with Dignity Law were enrolled in hospice care.

Similarly, in 2012, 82.8 per cent of recipients of Canada’s Medical Aid in Dying (MAID) received palliative care while 88.5 per cent had access to the service, if they had wanted to avail themselves of it.

All of this official evidence is available to Dr Best – but it doesn’t suit her argument.

Community Support for VAD

Dr Best questions the fact that opinion polls have consistently found around 80 per cent of Australians want voluntary assisted dying to be legalised. In 2019, a fact check by Emeritus Professor of Nursing, Colleen Cartwright and Charles Douglas, a senior lecturer in Clinical Ethics and Health Law, looked at 10 polls conducted in Australia between 2007 and 2016. Professor Cartwright says:

“[the] statement that 80% of Australians and up to 70% of Catholics and Anglicans support euthanasia laws is backed up by a number of surveys – but not all.”

But she explains that those polls which showed less support were those in which “terminal illness” was not stated as the criteria.

Similarly, Charles Douglas says the claim that 80 per cent of Australians presents a generally accurate summary of the spread of opinion on assisted death. So, despite consistent polling results which have been scrupulously checked for accuracy and methodological integrity, Dr Best says:

“A poll in Queensland last month found public support was 41%. A recent poll in New Zealand found that when the public was given more information, support for euthanasia fell to 21%.”

It’s telling that Dr Best doesn’t name these polls. Not surprisingly, the Queensland poll was commissioned by Cherish Life, a pro-life organisation, the Australian Christian Lobby and HOPE (an anti-VAD lobby group). In this poll, Voluntary Assisted Dying, is referred to, pejoratively, as Assisted Suicide. I’ll leave you to look at the leading questions in this survey.

In fact, 41 per cent of those surveyed weren’t responding to a question about whether they supported the legalization of VAD, they were responding to a question about whether they thought it should be a “priority”. 30 per cent didn’t say they didn’t support VAD, they responded to the proposition that it shouldn’t be rushed and that the safeguards needed to be right.

Responding to this question, 18 per cent felt more palliative care services needed to be put in place first. Only 11 per cent of the respondents to this highly biased poll said “Don’t proceed at all.

The claim relating to support in New Zealand being as low as 21 per cent is remarkable given that, in their 2020 referendum, 66 per cent voted “Yes” to the legislation after a long and detailed public debate during which the religious right did their damnedest to “educate” the public.

Safeguards are Impossible

“It’s not possible to write a law that can’t be abused,” says Dr Best. And she’s right. Any law can be abused, but that’s not a reason not to have them! Based on the minuscule number of court cases and convictions worldwide, the record shows that laws related to voluntary assisted dying are the least likely to be abused. Yet, Dr Best insists:

“We have documented evidence from the jurisdictions where euthanasia has been legalized that it is not possible to legislate safely for euthanasia.”

That’s simply not true. If the safeguards in jurisdictions where VAD is legal were routinely being breached we would see a rash of court cases and convictions. We would, undoubtedly see voters clamouring to have the legislation overturned. And we would see a noticeable drop in the public’s trust in the medical profession.

It’s true, there have, very rarely, been accusations pointed at doctors in Belgium and the Netherlands, but on the rare occasion these matters go to court (since VAD was legalised), the doctors have been acquitted. It’s worth noting that issues being raised and going to court means that the checks and balances – the safeguards – are working; that the system is transparent enough to identify cases which may not have been carried out to the letter of the law.

Statista (an international company which provides data and statistics to businesses), records statistics on public trust in healthcare in countries throughout the world. In 2021, The Netherlands (which gets the bulk of criticism about its euthanasia laws) ranks third in the world with 80 per cent trust, above Australia (8th) at 75 per cent. The global average is 66 per cent.

A 2016 poll, conducted by academics, showed 88 per cent of Dutch people support The Netherlands’ euthanasia law.

A 2019 article from Dutch News confirms 87 per cent support. It beggars belief that there would be such overwhelming support for a health system which was actively killing patients from vulnerable groups without their consent. There would be a national outcry!

In 2011, there was a referendum in Zurich as to whether voluntary assisted dying (VAD) should be banned. 85 per cent voted against the suggestion. The good citizens of Zurich had 69 years to consider the pros and cons of VAD – it’s been legal in Switzerland since 1942.

Further, the Swiss law is the most permissive in the world, and has virtually no “safeguards” in terms of criteria. Yet voluntary assisted dying deaths are not spiralling out of control in Switzerland. In fact, they consistently represent just under 2 per cent of that country’s deaths.

Oregon legalised voluntary assisted dying in 1997. An academic study in 2013 found that while only 60 per cent of Oregon voters voted “Yes” in the 1997 referendum, support in the intervening 15 years had grown to 80 per cent. This is not a sign of a law that’s failing to safe-guard patients.

Euthanasia “Without Consent”

Dr Best associates the legalisation of VAD with the proliferation of what we call LAWER deaths – life ending acts without explicit request. 
She says:

“1000 people a year in Holland, are given euthanasia without their knowledge or consent.”

It sounds horrifying. But, is it true? Well, yes … but, mostly, no. In 2014, Kenneth Chambaere, Interdisciplinary Professor of Public Health, Sociology & Ethics of the End of Life at the End-of-Life Care Research Group, and others, looked at these “life ending acts without explicit request” in The Netherlands. Chambaere et al found that:

“In most cases (87.9%), physicians labelled their acts in terms of symptom treatment rather than in terms of ending life.”

Ironically, providing symptom relief, even if it hastens death, is an intervention that Dr Best enthusiastically defends and supports in her speech.

Chambaere et al found that none of the physicians considered the intervention they had performed was “euthanasia”. And, in 24 per cent of cases, physicians said patients had previously discussed with them their wish for an assisted death. (In other cases, the doctors would almost certainly have discussed the matter with the family.) What Dr Best doesn’t tell her audience – and she will know this – is that “life ending acts without explicit request” occur in every country, not just those that have legalised VAD.

Nor does she mention that, in countries and jurisdictions where VAD is legalised, these interventions decline, not increase, because patients have the option to make their request formally, access VAD before they become incompetent, and, in some countries like The Netherlands, provide their consent in a Living Will or Advance Health Directive. My friend, statistician, Neil Francis, has demonstrated this for Netherlands and Belgium here:

Empirical trends in NVE rates before and after legalisation of assisted dying

If Dr Best is outraged by these kinds of deaths, she should support VAD!

Eligibility Criteria for VAD will be ‘Inevitably’ Expanded

Megan Best claims the law in The Netherlands has “been expanded”. Again, this is simply not true. In 2017 the ABC asked a group of legal experts to fact check this claim. They found it was entirely unsubstantiated.

The ABC article confirms:

“Despite [a] few changes, legal experts contacted by Fact Check agreed there was no evidence of restrictions being increasingly loosened.”

After looking at the laws, world-wide, Cameron Stewart, a Professor of Health, Law and Ethics with the Sydney Law School, said:

“There’s no evidence at all of a slippery slope in any of the American jurisdictions.”

Stewart acknowledged there had been some changes to age restrictions in Europe but also said:

“… in terms of it being a slippery slope, I think the evidence there is really questionable”.

Professor Jocelyn Downie, an international health law expert,  said:

“I can’t think of a jurisdiction that expanded who can administer the drug and when. The bottom line is that we have not seen evidence of the slippery slope and there is no good reason to believe that the experience on that front would be any different in Australia.”

Yet, Best can’t help throwing a red herring into the argument:

“Some people have discussed the need to allow euthanasia for dementia patients.”

Yes! Yes they have. Some people have discussed making it available for people who are tired of life. Some people even advocate anyone over 18 should have access to the law. But the fact that “some people” are discussing something, doesn’t mean it’s going to happen.

If – and this seems highly unlikely – any change is made to these laws, it will only be after exhaustive discussion, research, and consideration of suitable safeguards. Our parliaments will have to debate it and vote as a majority to change the resolution – and answer to their constituents. I’m sure there are people in Oregon who would like their Dying with Dignity law to be available to people with dementia. But, after 24 years there has been no expansion to the Oregon law.

Suicide Contagion

Throwing in another red herring, Dr Best suggests that legalising VAD will lead to an increase in suicide.

“… when governments sanction suicide as a solution to despair, bypassing euthanasia bills, the unassisted suicide rate goes up”

This is just not true. This ridiculous contention comes from a very flawed paper by anti-VAD Dutch doctor, and religious ethicist, Theo Boer and it’s frequently repeated by Australian Catholic bio-ethicist, Margaret Somerville. This outrageous falsehood has been forensically examined and debunked by Neil Francis, from the website “Dying for Choice”. Francis is not the only one who has found Professor Somerville’s attention to evidence and facts often wanting. After she appeared as an “expert witness” in an Iowa District Court case the court rejected her testimony, determining that the professor:

“…specifically eschews empirical research and methods of logical reasoning in favour of ‘moral intuition.’  She has no training in empirical research…”

The same could be said of Dr Best. Elsewhere, Neil Francis has found Dr Best expounding information from an academic paper which says the exact opposite of what she claims. But, of course, its findings didn’t suit her anti-VAD narrative.

Professor Somerville points to a high rate of suicide in Belgium. But, as Francis points out, she ignores a similarly high rate in Lithuania where VAD is not legal. Nor does she acknowledge that suicide rates for The Netherlands and Switzerland are below the European average. And, as Francis points out, even if the suicide rate in a jurisdiction does increase after the introduction of VAD, that doesn’t mean there’s a correlation between the two. Curiously, Somerville never factors in a far more likely correlation – the unemployment rate. Oregon does have an issue with suicide. But, says Francis:

“Oregon was among the top ten states for 12 of 16 years immediately prior to the DWDA [Oregon’s VAD legislation], but for only 4 of now 18 years since.”

The claim that the suicide rate is linked to VAD is untenable. As Francis says:

“In statistical terms, variance in the Dutch unemployment rate alone between 1960 and 2015 explains most (80%) of the variance in the Dutch general suicide rate.”

Doctors Not Signing On to Participate

Dr Best says VAD is poorly supported by the medical community –  only 15 per cent of Victorian doctors have signed up to participate in VAD.

We know from the experience in Oregon that uncertainty about the safeguards for physicians and a whole lot of fear-mongering by the religious lobby tends to make physicians reluctant to sign up when these laws are first introduced. But, over time, as doctors become more confident with the law, the number of providers increase.

This is exactly what’s happening in Victoria. The number of doctors who completed the training increased by 15 per cent in the first six months. Originally there were 422 doctors registered in the program, now there are 511 – an increase of 22 per cent in just a year.

Applicants for VAD not in Pain

Dr Best says, correctly, that pain is not the major motivation for people requesting voluntary assisted dying. That is not to say it is never a factor, but it is the symptom that is most easily controlled at the end of life. This isn’t in contention. But, not being in pain doesn’t mean you have no distressing physical symptoms, and psychological and existential pain are also very real.

It’s important to understand that, as you die, it’s unlikely to be one thing that causes your suffering – but a tsunami of symptoms that make your life unbearable.

Dr Rodney Syme has explained some of the cascading symptoms that may occur at the end of life, not all of which can be controlled. Patients may experience not just one, but a combination of these symptoms at the end of life:

  • physical pain
  • breathlessness
  • cachexia – extreme weight loss
  • difficulty swallowing – unable to even swallow your own saliva
  • coughing and fear of choking
  • nausea vomiting
  • diarrhoea and/or constipation
  • faecal incontinence
  • discharge, bleeding, odor

Let’s see what this looks like in a real person. Rachael Ryan describes 63-year-old Rudi Dubron’s death from laryngeal cancer:

A tracheostomy robbed Rudi of his ability to speak and, later, caused him great difficulty in swallowing. He suffered from mouth ulcers, constipation, diarrhoea, loss of appetite and pneumonia. His pain was controlled by liquid morphine.

Towards the end he had extreme difficulty swallowing even fluids, he suffered shortness of breath, and significant loss of weight and energy. His suffering was unbearable and unrelievable. The only avenue that was open to him was to refuse food and water.

It took Rudi Dubron 47 days to die.

Yet, Dr Best’s response to patients in this predicament is:

“While Christians can understand what we may learn through suffering, such attitudes are not widespread. In a society that’s forgotten the meaning of suffering is understandably a lack of willingness to endure.”

[My emphasis]

Think about that. A lack of willingness to endure.

Who is Heartless?

Yet, Dr Best doesn’t want us to think she’s heartless.

She says:

“It’s not that I don’t sympathize. I do. I don’t oppose euthanasia because I don’t care.”

Instead, she casts those of us who campaign for voluntary assisted dying as “the bad guys”:

“The whole euthanasia campaign is being driven by people who want control and don’t care what happens to vulnerable people.” [My emphasis]

Well, yeah! I want control over my own life and death, and I want the choice to determine when, and where and how I die if I am suffering from a terminal illness. But, I don’t want that at the expense of vulnerable people.

I have spent the last 10 years researching every claim I can find about the plight of vulnerable people under VAD laws and in every single case I’ve been able to determine that the claims are unsubstantiated, untrue, and frequently malicious propaganda.

Dr Best thinks it’s entirely appropriate for her religious beliefs to be prioritised over my desire for autonomy.

“As Christians, we know that we live in a fallen world where suffering is inevitable that there is a better world to come when all tears will be wiped away. And deep down we all know that it is wrong to kill the innocent, even when they ask us to.”

In fact, nobody is asking Dr Best to kill anyone. All we are asking is that she, and those who think like her, respect the fact that the vast majority of Australians don’t share their views.

Why should the trajectory of my life be determined by Dr Best’s religious convictions? Or the convictions of some equally religious member of parliament? I respect their right to choose not to have VAD, or not to be an active participant as a medical practitioner. But surely my strongly held conviction that I should have the choice not to suffer at the end of life must equally be respected – especially given the overwhelming evidence that the freedom to make that choices endangers no-one else.

“Pro-life” advocates like Dr Best seem to think that people who advocate for VAD simply disregard their claims about the ‘dangers’ to the wider population. That is so incredibly far from the truth.

I never assume that claims made by people like Dr Best are untrue. My response is always, “Could that be right?” And then I go to the very best, most reliable sources I can find: academic papers, government statistics, medical reports (the annual reports from the Netherlands are comprehensive and all in the public domain), interviews with the family and friends of the patient, or the patient themselves, judicial inquiries, etc. I never look for evidence to prove I’m right. I always look for evidence to point me towards the truth. Because if it were true that my freedom to choose voluntary assisted dying really meant that elderly people, Indigenous people, disabled people and people with dementia were going to be put in danger, I would not support it.

If all the horror stories told by organisations like Catholic anti-VAD lobby group, HOPE, and websites like BioEdge (run by Opus Dei member Michael Cook) and Defend Human Life! (a one-man show run by serial propagandist, Richard Egan), were true, I would be horrified. But I’ve checked them – pretty much all of them over the past decade – and they’re just not true (or, often, half-true, with only the details that serve their argument included).

Dr Best urges those who have listened to her Life Summit speech to contact their local MP and urge them not to vote for the forthcoming VAD Bill in NSW. But, she is asking them to act based on a raft of information that is demonstrably untrue.

You have to ask, “Is that moral? Is that ethical? Does that reflect Christian values? And, does it show any respect for those patients of Dr Best who face unrelievable suffering at the end of their life?”

What kind of Christianity is this? I’m no Christian, but somehow I can’t imagine Jesus looking over someone suffering unrelievably at the end of their life, with no prospect of recovery, and berating them for their “lack of willingness to endure.”

Chrys Stevenson