Certainty is not a defensible standard for policy making in the context of assisted dying

I mentioned in a Bioethics editorial a while ago that new frontiers are opening in the assisted dying debate. As an increasing number of jurisdictions decriminalize assisted dying in some shape or form, ethical arguments against all models of assisted dying are seen increasingly as settled in favour of this practice. I suggested in said editorial that the focus of the academic debate has shifted toward a new set of questions: the scope of assisted dying (i.e., who should be eligible), the status of advance directives, and the issue of conscientious refuser accommodation.^[1] It seems my prediction wasn't far off the mark. The Canadian Academies have produced a voluminous expert panel report focusing extensively on scope (mature minors, mental illness) as well as the issue of advance directives. I highly recommend it to your attention.^[2]

Unfortunately, as is so often the case with these sorts of panels, it is unclear how its members were appointed: Why was a particular member appointed and not someone else? What criteria were used to determine who would and who would not be chosen? And, indeed, did the funder of the report, the Government of Canada, have a veto right on particular potential expert members? All of this matters if the sponsor of the report, in this case the Canadian Academies, wants to meet basic standards of public reasonableness and accountability. After all, the Government of Canada is currently defending its restrictive assisted dying legislation in the Supreme Court of Canada. The expert panel was tasked with summarizing the state of knowledge, but not with providing policy guidance to the government. It is not inconceivable that the government hopes to use evidence from these ostensibly authoritative reports in the Court. For that reason alone, transparency about the procedures guiding the appointment of experts drafting reports financed by that same government is important.

The chairperson of the group drafting the report on mental illness and assisted dying, Kwame McKenzie, made a statement to Canadian news media in support of current government policy that excludes competent people who suffer from refractory mental illness from access to assisted dying. He reportedly cautioned that ‘no one can be completely certain that a mentally ill patient is never going to get better’.^[3] Which takes me to the actual topic of this blogpost: certainty as a standard for health policy making. Complete certainty, if that were ever possible in the context of health and disease, where most decision making is based on probability as opposed to certainty, might be a defensible threshold if nobody were harmed by the implementation of such a high standard. If the setting of a high standard were cost neutral, there would be no good reason not to have such a standard.

Of course, in the real world, such an elevated standard comes at a cost. A high price is paid by those patients who have decisional capacity and live with refractory mental illness that renders their lives not worth living to them, who would avail themselves of assisted dying if it were available to them.^[4] Regulatory attempts influenced by Dr McKenzie's demand for certainty would result in a restrictive eligibility policy harming precisely those patients who will, in reality, never get better. It is uncontroversially true that that is the case for many patients, particularly those suffering from refractory depression. Dr McKenzie's take is identical to the policy favoured by the government sponsor of this report. High suicide rates among this particular group of patients suggest that many of these patients vote with their feet while well intentioned experts and policy makers implement policies that are detrimental to what is arguably in their best interest.^[5]

Ultimately, policy makers implement legislation aimed at overriding competent patients’ choices simply because they disagree with their choices. The justification for such strong paternalistic action rested so far on vacuous labels, such as ‘vulnerability’, under the cover of which individual agency was removed wholesale from a whole class of patients with legal capacity. This is now apparently complemented by demands for certainty. If medical practice and health policy depend on certainty as a conditio sine qua non, going forward, no further regulatory action can be taken on any subject. In fact, the current assisted dying legislation, as it requires that death of the assistance‐seeking person is ‘reasonably foreseeable’, would have to be reconsidered, given that we can never be certain that death would actually be forthcoming. The decriminalization of the possession and use of cannabis in Canada, that was recently legislated by the Government of Canada, would have to be reconsidered, because we cannot be certain what the consequences of that will be for a whole range of issues. 

The lesson to be taken from the demand for certainty is this: mentally ill people with legal capacity are treated unjustifiably as special cases by mental health experts and policy makers. They are being stigmatized in the name of protecting them. Strong paternalism is inflicted on them in ways that would not be considered acceptable in a liberal, modern 21st century society if it affected others who
have legal capacity, but are not afflicted by the mental illness label.

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[1] Schuklenk, U. (2017). New frontiers in end‐of‐life ethics (and policy): Scope, advance directives and conscientious objection. Bioethics, 31, 422–423.

[2] Canadian Academies. (2018). Medical assistance in dying: Expert panel on medical assistance in dying. Ottawa. Available at: https://www.scienceadvice.ca/reports/medical‐assistance‐in‐dying/ [Accessed Jan 6, 2019].

[3] Harris, K. (2019, Jan 3). The next frontier in the right to die: advance requests, minors and the mentally ill. CBC News. Available at: https://www.cbc.ca/news/politics/maid‐assisted‐death‐minors‐mental‐illness‐1.4956388 [Accessed Jan 6, 2019].

[4] Rooney, W., Schuklenk, U., & van de Vathorst, S. (2018). Are concerns about irremediableness, vulnerability, or competence sufficient to justify excluding all psychiatric patients from medical aid in dying? Health Care Analysis, 26, 326–343.

[5] Schuklenk, U., & van de Vathorst, S. (2015). Treatment‐resistant major depressive disorder and assisted dying. Journal of Medical Ethics, 41, 577–583.

Viewpoints: should euthanasia be available for people with existential suffering?

Here's a piece I have put together jointly with Xavier Symons for The Conversation.

Euthanasia debates often focus on people experiencing unbearable physiological or psychological suffering. But research suggests “loss of autonomy” is the primary reason for requesting euthanasia, even among patients with terminal cancer. There have also been suggestions existential suffering could be one of the main motivations behind such requests.

Existential suffering refers to an individual experiencing a lack of meaning or sense of purposelessness in life. Such sentiments bring feelings of weariness, numbness, futility, anxiety, hopelessness and loss of control, which may lead a dying patient to express a desire for death.

Some bioethicists argue it is inconsistent to allow euthanasia for terminal illness but not for existential suffering, as both are a source of profound pain and distress. While existential suffering usually tracks closely with catastrophic illness, it’s worth considering a situation in which there are no motivating medical reasons for a request for euthanasia or assisted suicide. Should a person be eligible purely on the basis they no longer wish to live?

A case in point: a largely healthy retired palliative care nurse in the UK who ended her life at an assisted suicide clinic in Switzerland. Should she have received medical aid in dying based on her carefully considered decision that she did not want to subject herself to the perceived awfulness of the ageing process?

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The case against

Xavier Symons, Research Associate, University of Notre Dame Australia

Some may think people who request euthanasia do so because of excruciating and unremitting pain. The reality is almost always more complex. Literature on assisted dyingsuggests individuals who request euthanasia are typically suffering from a profound sense of purposelessness, loss of dignity, loss of control, and a shattered sense of self.

A 2011 study of Dutch patients who requested euthanasia indicated that “hopelessness” – the psychological and existential realisation one’s health situation will never improve – was the predominant motivation of patients who requested euthanasia.

And a recently published Canadian study of requests for medical assistance in dying stated “loss of autonomy was the primary reason” motivating patients to end their lives. Symptoms also included “the wish to avoid burdening others or losing dignity and the intolerability of not being able to enjoy one’s life”.

One option to address such requests is to establish a state apparatus to assist patients in ending their lives. An alternative, and one I would advocate, is to address deficiencies in health care infrastructure, and attempt to alleviate the unique suffering that drives patients to request euthanasia in the first place.

Spiritual or existential care can help someone who feels their life has lost meaning. from shutterstock.com

New approaches to end of life care, such as spiritual or existential care, engage at a deep level with the complexity of the suffering of patients with terminal illness. And, as has been stressed by several commentators, there is a need to improve access to palliative care in poorer regions, and provide optimal symptom management for patients wishing to die at home.

We could hypothesise about various situations where a person might request euthanasia without having a medical condition. Someone might wish to hasten their death because they are tired of life or afraid of ageing or death.

These cases are interesting insofar as they are not motivated by an underlying pathology. Yet there is much reason for concern.

Sanctioning euthanasia for the tired of life veers too close to a government endorsement of suicide. Where the state has a significant stake in suicide prevention, sanctioned euthanasia for existential suffering is not only counterproductive, it’s dangerous. Fundamentally, we would erode any meaningful difference between cases of suicide we regard as acceptable, and those we see as regrettable and befitting state intervention.

We might regard it as regrettable that an educated, wealthy 30-year-old takes their own life due to an existential crisis. Yet it is difficult to say how this is different in morally relevant respects from a 75-year-old who feels their life is complete and is undergoing an existential crisis.

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The case for

Udo Schuklenk, Professor and Ontario Research Chair in Bioethics, Queen’s University, Canada

This discussion is mostly hypothetical. There seem to be few, if any, real-world cases where a competent person’s request for an assisted death is not motivated by an irreversible clinical condition that has rendered their lives not worth living in their considered judgement.

For instance, in the Netherlands, most people who ask for euthanasia and who are not suffering from a catastrophic illness, typically experience a terrible quality of life that is caused by an accumulation of usually age-related ailments. These involve anything from incontinence to deafness, blindness, lack of mobility and the like.

We do not give up on life for trivial reasons. Just think of the many refugees who – on a daily basis – are willing to risk their lives to escape an existence they do not consider worth living. Ending their lives is not typically on top of their to-do list.

Think of the many refugees who risk their lives to escape an existence they do not consider worth living. Ending their lives is not on top of their to-do list.ZEIN AL-RIFAI/EPA

The case of the anti-choice activists – who deny there is ever a justifiable reason for euthanasia – has been intellectually and politically defeated. None of the jurisdictions that have decriminalised assisted dying have reversed course, and more jurisdictions are bound to make this end-of-life choice available.

Public support remains strong in each permissive jurisdiction, particularly so in Belgium and the Netherlands where the majority of citizens support the existing laws.

Inevitably the question of scope must be addressed: who ought to be eligible to ask for and receive assistance in dying? If a competent person wishes to see their life ended for non-medical reasons, and asks for assistance to do so, I think a just society ought to oblige him or her if the following conditions are met:

1. the person has decisional capacity (is of “sound mind”)
2. the decision is reached voluntarily (without coercion)
3. no reasonable means are available, that are acceptable to the person, that would render their lives worth living again in their own best judgement
4. based on everything we know, the condition that motivated their request is irreversible.

The view that medicine is a profession aimed only at maintaining life, regardless of a patient’s quality of life, is dying its own death. If a clinical, psychological or other professional intervention does not benefit a patient to such an extent that they consider their continuing existence worthwhile, by definition that is not a beneficial intervention.

Equally, if an intervention, at a burden acceptable to the person, renders in their considered judgement their lives worth living again, they will not ask for an assisted death.

In most corners of the world people have fought hard to increase their individual freedoms to live their lives by their own values. A significant state interest is harmed if the state wishes to infringe on such autonomy rights.

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Xavier Symons

It is true the health system, and indeed the state, should respect patient autonomy. Yet in practice we often put other considerations ahead of concerns like autonomy. Patients may not receive the treatments they request for a variety of reasons, like they may be prohibitively expensive, have a negligible chance of success, or no medical justification.

I believe if it is harmful to the interests of the state to legalise euthanasia for patients without a terminal illness, then the state has a right to refuse.

Significantly more research needs to be conducted on the social impacts of euthanasia, and physician assisted suicide, for patients without a medical condition. In this case, we have no “Oregon model” – an assisted suicide regime seen by many as an example of a safe and well-regulated system – to confirm or assuage our concerns. Jurisdictions such as Oregon only allow assisted suicide for patients with a terminal illness.

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Udo Schuklenk

I echo Xavier’s plea to improve health care in order to improve our quality of life, and, as a likely corollary of this, to reduce the number of requests for medical aid in dying. However, even in the best of all possible health care worlds, unless unbearable suffering itself has been eliminated, some patients will ask for an assisted death. No amount of “dignity therapy” rhetoric and references to small-scale studies changes that fact of the matter.

Xavier correctly mentions some reasons for doctors justifiably not providing certain patient-requested medical care. They are all based in different ways on harm-to-others justifications such as resource allocation rationales, or are futility-related (arguably also a case of harm-to-others given the reality of limited health care resources). This reasoning is not applicable to the case under consideration given the self-regarding nature of the request.

Xavier is correct that the state would be under no obligation to legalise euthanasia for not catastrophically ill patients if that was significantly harmful to the interests of the state. However, there is no evidence that the availability of euthanasia is harmful to state interests.

The original Conversation piece can be found here.