Thursday, January 24, 2019

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

Image result for certaintyI 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.

[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:‐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:‐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.

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