Thursday, April 13, 2023

Humanists Against Assisted Suicide and Euthanasia respond to pro-euthanasia briefing on "Canada's Assisted Dying Laws"

Published by Humanists Against Assisted Suicide and Euthanasia (HAASE)

Kevin Yuill
By Trudo Lemmens and Kevin Yuill

A Humanists UK Briefing on “Canada’s Assisted Dying Laws” has been released this month. The Briefing states that it is an analysis of Canadian assisted dying practice to see ‘if there are real problems and, if so, what can be learned from them’. The main conclusion of the pamphlet is ‘we don’t believe that anyone in Canada has had an assisted death who shouldn’t have been able to’. This is a bold pronouncement as, it seems, Humanists UK is more confident in the Canadian system than are some of the MAiD providers themselves. One recently reported on her moral anguish of having ended the life of a cancer patient who had a 70% chance of full recovery but refused all treatment and insisted on receiving MAiD.

Trudo Lemmens
The Briefing is part of Humanists UK’s long advocacy of legalising assisted suicide and euthanasia in the UK and its Crown dependencies. They seem to want to import the Canadian system of euthanasia and assisted suicide – more or less – to the UK. They have variously stated that ‘[b]eing able to die, with dignity, in a manner of our choosing must be understood to be a fundamental human right’. Does that mean all requests for assistance with suicide must be honoured? If not, who should and shouldn’t have this right? In the past, they supported extending eligibility to ‘those who are incurably suffering, permanently incapacitated and who find their lives intolerable’, which resembles the language used in the recently expanded Canadian law it discusses in the briefing. That seems to mean all those with a permanent disability – a large percentage of the population – who find their lives intolerable. Presumably, those who are not physically disabled will not be eligible, no matter how intolerable their lives are. At another point they said they supported it for those ‘who are physically unable’ to end their lives. We have asked Humanists UK for clarification of just who and who should not have assisted suicide – none was forthcoming. They don’t seem to know themselves.

The Briefing wishes for ‘a tolerant world where rational thinking and kindness prevail’. But Humanists UK can hardly be characterised as tolerant or rational when it comes to dissent from their position on assisted dying and they are anything but kind to those who disagree with them, calling what they say ‘misinformation’.

It is easy to see why Humanists UK decided to write this pamphlet. A stream of disturbing stories about lethal injections being given out liberally for intersecting reasons of poverty, homelessness, disability, and depression has made many in the UK question whether assisted dying would be appropriate here. Nathan Stillwell, a Humanists UK assisted dying campaigner, accused ‘some people’ of ‘knowingly or unknowingly pounc[ing] on misinformation from Canada in order to hinder the campaign here’.

The Briefing, however, does precisely that. It misleads its readers – knowingly or unknowingly – about how many problematic cases there are, about the cases themselves, and about Canadian law, creating an inaccurate portrayal of both the Canadian law and practice of ‘Medical Assistance in Dying’ [MAiD], the euphemistic Canadian term that encompasses both euthanasia and assisted suicide, but in practice involves nearly exclusively the former (provision of a lethal injection by physicians or nurse practitioners was the cause of all but 7 of the 10,064 MAiD deaths in 2021).

The Briefing is often simply wrong but above all it fails to show why Canada’s experience with euthanasia should be treated as anything other than a cautionary tale for the rest of the world. There are many informative reports and discussions available and readers of the Briefing should avail themselves of them – we have referred to some below.

Canada has in a period of about seven years witnessed the highest number of assisted death cases, with more than 30,000 cases, and in 2021, the last full year of reporting, more than 10,000 cases. This is expected to increase significantly, considering that the law was expanded outside the end-of-life context only in March 2021 and is planned to expand further, including for mental illness in 2024. Some provinces already have the highest proportion of deaths by physician-provided lethal injection in the world: seven per cent of people in Quebec currently die by euthanasia. Understanding how this occurred and what problems have arisen seems important for any jurisdiction debating a form of legalization of the practice.

The authors of the Briefing rightly recognize that ’facts surrounding some of the cases featured in the coverage are often hard to verify due to doctor/patient confidentiality.’ What they do not say is that it is inherently challenging to satisfactorily investigate these deaths after the fact. The chief witness is dead. The cases where outraged or traumatised family members – often informed only shortly before their loved one is euthanised – protest at being stonewalled by MAiD providers are inevitable because of doctor/patient confidentiality. Family members and loved ones have often not been consulted. Nor will they be if the patient insists.

The briefing is extremely selective. It considers only a very few cases where it disputes both the facts and the way the cases were reported, and fails to mention key issues. It ignores, for instance, the extensively documented case of John Lyon, a suicidal ex-policeman who suffered from mental illness (though he qualified for a lethal injection because of his physical impairments). The Briefing might have examined the case of 37yr old Jennyfer Hatch, whose MAiD death was celebrated in a beautiful advertisement by clothes retailer La Maison Simon but who had long sought treatment for her painful condition. Bill Gardner’s articulate response to being offered MAiD was also available. The Briefing ignores the series of cases publicly discussed in a Disability Filibuster, presented by Disability Advocates to a Joint Parliamentary Committee, and available on a publicly accessible website. It failed to mention a detailed fact-checked investigative report by Alexander Raikin, which includes statements by MAiD assessors and providers. This report was also discussed in the UK by Yuan Yi-Zhu.

Instead, the Briefing uses confidentiality and privacy law as a convenient shield, just as in Canada, institutions and providers appear to have used privacy law as a shield to prevent family members who complained from gaining full access to medical records.

This could and should have been a reason to dig deeper, to consult all available sources, and to take testimony of individuals, family members, friends, and disability advocacy organizations more seriously. Instead, the Briefing places extraordinary trust in defensive and vague statements by institutions and professionals involved in the practice, largely ignoring fact-checked media accounts.

If confidentiality is so problematic, how can the Briefing so confidently trust that there is no one who ‘has had an assisted death who shouldn’t have been able to’? In what other area of policy making would it suffice to argue along the lines of ‘trust the institutions and those involved in a practice and distrust or ignore statements by potential victims’?

The Humanist Briefing’s discussion of Case reports

Not only is the Briefing selective with its case reports, it’s inaccurate or confused about those that it does discuss. For instance, it rightly points out how problematic it is that army veterans struggling with PTSD and with physical disability were offered MAID by a case worker, when they applied for supportive care. But then it claims this was the result of a ‘rogue’ employee. Later, it states: ‘there is a need to inform individuals that assisted dying is available’. So what did the rogue employee do that Humanists UK would not advocate? And indeed, the organization of MAiD assessors and providers funded by the government to develop guidelines and training explicitly recommends to put MAiD on the table for everyone who ‘might qualify’.

The Brief seeks to reassure the reader that ‘none of these veterans applied for, much less were approved for, an assisted death’. That’s not the point – it is that disabled people are being informed that, as an alternative to treatment, there is a much cheaper and 100% effective ‘medical treatment’ available – being euthanized.

Persons with a physical disability – like the Paralympic veteran mentioned in the Briefing – are likely to qualify for MAID if they say they suffer intolerably. It would entirely depend on the judgment of the physicians assessing the request if this process would have ‘stopped’. Considering other cases that we have seen in Canada, it is very likely that she would have been approved had she eventually asked for it.

In the Roger Foley case, the Humanist Briefing authors want to reassure the reader by stating that ‘Roger Foley never applied for an assisted death’. That is again precisely the controversy: that he never asked for it and insisted on adequate home care, but was offered MAID as an option when he expressed suicidal thoughts. Audio clips confirm that he was offered MAID without asking for it. Roger Foley talks about this openly and has documented this. The Humanist Report could have consulted Roger Foley. Instead, it relies fully on the hospital’s hiding behind ‘privacy and confidentiality‘ to suggest we cannot know more.

‘Assisted Dying for Hearing Loss’

As with the veterans’ cases, the Humanist Briefing misrepresents why Alan Nichols’ death by MAID was so controversial when it states that media wrongly reported he was approved for assisted dying because of ‘hearing loss’. Media reports flagged Nichols’ death by assisted dying as problematic because it was questionable that he fulfilled the explicit requirement under the law at that time, i.e. that his death be ‘reasonably foreseeable’, and because concerns about mental health and capacity for decision-making.

Alan Nichols was not terminally ill. He had suffered from seizures earlier in his life and had a cognitive disability in addition to severe hearing loss (he had a cochlear implant). He was brought to an emergency room as part of a wellness check where he was diagnosed as suicidal. He was treated briefly for depression and involuntary hospitalized where he remained until he received a lethal injection, less than three months later. His family was informed only three days before his scheduled death. They were given no reasonable opportunity to discuss with him other options. When the family filed a complaint, the health authority submitted a letter of response in which it defended an open interpretation of ‘reasonable foreseeable death’ and stated that it did not require Alan Nichols to have a terminal illness.

These facts are not ‘misinformation’.

Moreover, they are easily available; a public case report was published on the website of the International Network of the History of Neuropsychopharmacology, where four leading psychiatrists also provide commentary and mostly express their deep concern about the case. The Humanist Briefing could have consulted this case report and commentaries and the health authority’s official response it contains. They could also have consulted the family’s moving public testimony before a Parliamentary committee, where family members were extensively questioned and even parliamentary supporters of MAiD appeared to recognise that the case raised concerns.

Instead, the Briefing wrongly states that the professional regulatory authority (College of Physicians and Surgeons of British Columbia) ‘investigated’ the matter. The College explicitly refused to do so. The federal police also initially refused to do so, stating it was a medical issue for the College to investigate. When asked a second time by the family, the police allegedly failed to interview the family. It sent the family a copy of the original request form signed by Alan Nichols, which stated ‘hearing loss’ as the basis for his unbearable suffering, seemingly in support of their final decision that the legal criteria were fulfilled. While we must hope that hearing loss was not the sole basis for the health care providers’ final approval of his assisted death, the health authority provided no clarity as to what the basis really was. And frankly, any health professional should have been alarmed when a patient indicates ‘hearing loss’ as the reason for their unbearable suffering on a form where they request to receive assisted death.

Regardless of all that, the Humanist Briefing’s claim that ‘[h]earing loss is not a serious illness, disease, or disability that causes unbearable physical or mental suffering’, with which it suggests that it could never be a basis for MAiD in Canada, is also wrong. Again, the confusion over who does and who does not – and who should and should not – receive euthanasia permeates this Briefing as it does Humanists UK’s advocacy of ASE in general.

Hearing loss and deafness are disabilities that can be associated with ‘irreversible decline of capability’, and therefore can make someone qualify for MAiD under some of the MAiD providers’ very broad interpretation. The law’s additional requirement of intolerable suffering has been interpreted as being entirely subjective, with physicians agreeing to end the life of patients with disabilities based on the patient’s claim of such intolerable suffering.

Both Canada’s euthanasia advocates and Humanists UK seem to make it up as they go along. National broadcaster CBC’s Investigative Programme The Fifth Estate in ‘Is it too easy to die in Canada: Surprising approvals for medically assisted death’, featured among other cases a man in his twenties, who was approved and scheduled to receive MAID. He struggled with adjustment to vision loss resulting from complications of diabetes, and with pain associated with the treatment. His family discovered his scheduled death by chance and organized a social media campaign asking the government to stop the procedure. The physician felt compelled to cancel it, perhaps also because MAiD for mental illness is not yet a legal basis for MAiD, and mental health issues resulting from the vision loss may have motivated the request. The young man is interviewed in the programme and confirms he is happy to be alive. If vision loss can be a basis for approval of assisted death in Canada, it is reasonable to presume that some physicians would grant it for Deafness or severe hearing loss. Note that no regulatory authority appears to be investigating this young man’s approval for MAID.

Assisted dying for lack of social support or housing

The Briefing acknowledges two examples of cases where persons asked for MAID, one receiving it, for lack of adequate housing. It suggests that these cases were misrepresented in the media by opponents of assisted dying and ‘special interest groups’. It quotes at length a submission to parliament of Dr Chantal Perot, a MAiD provider and advocate. CTV, the media outlet reporting on this case in detail, obtained testimony from friends who confirm that the woman – who remains anonymous – did not want to die but that lack of adequate housing drove her to her death. The Briefing refers only to Perot’s submission.

Faced with reports of assisted dying of persons living in poverty, the Briefing authors say that ‘it would be gravely immoral to forbid someone less well-off the same right to an assisted death when a richer person with the same condition would be able to proceed’. The majestic equality of MAiD in Canada allows those who do not have access to adequate housing, social and disability support, and funding for some forms of health care that are not publicly funded in Canada the same option to die as those who have the money to provide it for themselves. As Anatole France observed: ‘The law, in its majestic equality, forbids rich and poor alike to sleep under bridges, to beg in the streets, and to steal their bread.’ The bleakness of the future for those who are poor and disabled is distinct from the situation of the better off.

By offering death as solution to social context-induced suffering, Canada is creating a cheap escape route for its social justice obligations. How an organization devoted to helping people ‘be happier and more fulfilled’ can explain this away is mind-boggling. The history of euthanasia and assisted suicide indicates that along with compassion comes the motivation to streamline society, to save costs and to make it more efficient by removing lives that are not useful to themselves or others. Not surprisingly, Humanists UK and other advocates are reticent about such calculations. Another missing report is one produced by the Canadian federal parliamentary budget officer that estimates the cost-savings of MAiD, which are considerable. If cost-savings were not the motivation behind Canada’s MAiD law, the realization that it does save costs is increasingly acknowledged and disincentivizes any revision of the rapidly expanding practice. Other utilitarian considerations would also have been worth mentioning, such as the fact that Canada has become the country with the most significant organ retrieval following MAiD. In fact, organ donation following MAiD is already directly promoted by the organization coordinating blood and organ donation in the country.

The Briefing’s reference to ‘the role of religious groups in the media’

Again, the Briefing is selective in its characterisation of those opposing legalised euthanasia and assisted suicide or the further expansion of it. Far too much of it is dedicated to cheap and lazy tropes. References are made to ‘covid conspiracy’ media sources, ‘anti-choice activists’ and ‘ultra-right wing’ US funding. For those concerned about conspiracies, the Briefing contributes its own conspiracy about these ‘powerful’ groups. It stops just short of accusing those who oppose ASE of being part of a Popish plot.

In its hurry to point the finger at religious groups for their apparent ‘misinformation’ about Canada, it conveniently ignores all Canadian disability advocacy organizations (more than 100 explicitly opposed expansion), several Indigenous organizations, three United Nations Special Rapporteurs and one Special Expert on Human Rights, the federal Canadian Human Rights Commissioner, many academic experts from law, medicine, bioethics, and other disciplines, many social justice and anti-poverty advocates, and several officials dealing with specific issues such as the federal Ombudsman of Prisons, who have all expressed concerns about the Canadian MAiD expansion or some components of the practice. Is this also all ‘misinformation’?

Misleading claims about the case law at the basis of MAiD and its further expansion

The Briefing is inaccurate when discussing Canadian law. It makes two problematic statements about the 2015 Supreme Court case that lies at the basis of Canada’s MAID legalization: ‘Canada’s laws have indeed changed from when assisted dying was first introduced in 2016, but these staggered changes are mostly due to Canadian MPs legislating for less than was required by the original Canadian Supreme Court decision that led to assisted dying in the first place, back in 2015.’ ‘The Supreme Court in 2015 ruled that competent Canadian adults suffering intolerably and enduringly have a constitutional right to a doctor’s assistance in dying.’

The 2015 Supreme Court decision in Carter ruled that an absolute prohibition was unconstitutional. Yet, it also explicitly refused to recognize a ‘right to die with dignity’ via physician assisted dying. It emphasized that it ruled only about MAiD in the circumstances of the case, which involved a person approaching her natural death. The Supreme Court also explicitly stated that it was not ruling about assisted dying for mental illness and in the case of minors. More details of the limits of the ruling and how it applies to the context of mental health the Briefing could have found in a recent letter signed by more than 30 law professors, including several constitutional and human rights law experts, and in law journal publications.

The Supreme Court of Canada is not a legislator. It gave Parliament in 2015 a year to enact a ’strict regulatory regime‘ that needed to balance access to some form of MAiD with protection against premature death of others. It left room, as required in a regime of separation of powers, to enact what it deemed fit for that purpose. Stating that the Supreme Court declared a broad constitutional right to MAiD is wrong; suggesting that there has been no further expansion since Parliament’s first law is disingenuous.

The Humanist Briefing is further misleading UK readers with the following statement:

‘So after another court case, the Court ruled again in 2019 that the law should be changed to fit the original ruling. … In 2021, the law was amended by Parliament to remove the “reasonably foreseeable” criterion.’ The Briefing makes it appear as if there was a second Supreme Court decision that rejected the ‘reasonable foreseeable natural death’ safeguard from the first bill. That is not the case. A lower, first instance court in the province of Quebec ruled this way. The Attorney General, who is in Canada also the Minister of Justice, refused to appeal the decision, an unusual decision for a statute so broadly supported by parliament two years earlier. No higher court has confirmed this ruling, which is not binding in other provinces and in higher courts. while there were several reasons, including constitutional ones, to do so. The expansion of the euthanasia law was not one necessitated by a constitutional ruling.

The report then misleadingly goes on to suggest that Canada took eight years to implement MAID in order for ‘safeguards to be developed, studies to be carried out, doctors to be trained, and guidance to be updated’. Advocates, including politicians, who supported broad access to MAID pushed to have it broadly accessible from day one. There was no conscious development of further safeguards: in fact, several safeguards, including the ‘reasonably foreseeable death’ restriction and a mandatory waiting period (to enable reflection and reconsideration), were removed with the second bill. There was no broad consultation or public discussion about this change, which was pushed through Parliament during the pandemic.

The expansion towards mental illness and mature minors

The report claims that the 2019 ruling somehow required a review of the expansion towards mental illness and mature minors (‘as per the 2019 ruling, there have been regular reviews‘). In addition to failing to clarify again that the 2019 ruling was a lower Quebec court decision, this statement is false. The 2019 ruling does not impose a review of expansion towards mental health and for mature minors.

The report further states that a federal committee ‘recommended that eligibility should include treatment-resistant mental illnesses subject to additional safeguards’. This is also incorrect. The phrase ‘treatment-resistant mental illnesses’ is not used in the federal report. In fact, the report recognizes that it is impossible to predict with certainty that persons with mental illness will not get better, but it nevertheless supports provision of MAID for reasons of mental illness. Second, the report does not recommend additional safeguards. It makes recommendations about how to implement the current requirements of the law in the context of mental illness, but does not recommend, for example, that all reasonable treatment options must be exhausted. The majority of Canadian mental health experts, none mentioned in the Briefing, have opposed MAiD on the basis of mental illness. One expert report strongly opposed expansion outside the end-of-life context and particularly permitting MAID for sole reasons of mental health, and pointed out that requiring exhaustion of all treatment options would be the most minimal requirement. Two prominent resignations, including of a mental health advocate, that affected the credibility of the federal committee, and a widely publicized public call by the Association of Chairs of Psychiatry of Canadian Universities to suspend the implementation of MAiD for mental illness are not mentioned in the Briefing.

The Humanist Briefing suggests that the ‘potential inclusion of mental illness and mature minors will move the Canadian law closer to that of Belgium and the Netherlands.’ Belgian and Dutch law explicitly require that physicians agree that there are no other options for relief of suffering, and thus that available medical treatments have been exhausted, which the Briefing acknowledges in its further discussion.

Canada’s law is not moving closer to Belgium and the Netherlands; it is going much beyond the liberal Belgian and Dutch regimes. This is important to keep in mind when also reading the problematic portrayal by the Humanist Briefing of media-reported cases. The open-ended nature and lack of detailed review of cases makes it so much more problematic to reject outright the seriousness of the Canadian cases, as the Briefing does.

The need for better safeguards

After ignoring all problems with the Canadian regime, the Briefing concludes: ’We don’t know that anyone has had an assisted death in Canada who shouldn’t have been able to, but the following are all important, well-tested safeguards that are missing in Canada but any UK system should learn from.’ The contrast between the report’s confident affirmation that there are no problems in Canada and the acknowledgement of missing safeguards should make it clear how unreliable and biased the preceding analysis really is.

At least we have here some recognition of problems, even though the Briefing remains too confident about how some suggested improvements will make the Canadian system safer.

Those really interested in learning about the pitfalls of the Canadian system should take the case reports, pointedly missing from the Briefing, more seriously. But they should also examine the official reports with a more critical eye that the Briefing appears to have done.

Indeed, the Briefing’s authors must have consulted at least the official Health Canada reports on MAID, since they mention some falsely reassuring statistics from the 2021 report: the average age of 76, the fact that ‘80% had received palliative care and 65% had cancer’ Professor Harvey Chochinov has challenged the palliative care data on the grounds that they were reported by MAiD providers, who did not specify what constituted palliative care. In many cases, people received palliative care only in the weeks preceding their MAiD death. And of course, a cancer diagnosis tells us nowadays not so much about medical prognosis that this should be seen as reassuring.

Moreover, the Health Canada reports contain other red flags that the Briefing could have identified. For example: in 2021, 57.6 % of the more than 10,000 people who died by MAiD declared that ‘inadequate control of pain (or concern)’ was a basis for their intolerable suffering, while we know that with adequate care, problems of pain control ought to be highly exceptional. Equally worrisome is how many identified ‘perceived burden on family, friends, or caregivers’ (35.7%), ‘loss of control of bodily functions’ (33.8%), ‘isolation and loneliness’ (17.3%), and even ’emotional distress, anxiety, fear, existential suffering’ (3%) as key components of their unbearable suffering. That the Briefing remains silent about all these issues just confirms its remarkable effort to find no concrete issues of concern.

Of course, there will be disagreements about a contentious subject as assisted dying. People can disagree about the wisdom and need of legalising some form of assisted suicide or euthanasia. But a fair assessment of the risks and benefits of an inherently irreversible practice resulting in death seems essential. This makes learning from other jurisdictions that have gone this path so important. The Humanists UK briefing does a disservice to the well-informed debate that should take place in the UK.

Yours sincerely,

Trudo Lemmens (LicJur, LLM bioethics, DCL) is Professor and Scholl Chair in Health Law and Policy, Faculty of Law, University of Toronto.

Kevin Yuill CEO of Humanists Against Assisted Suicide and Euthanasia (HAASE)

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