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.
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:
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.
