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For Their Own Good A Response

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For Their Own Good A Response

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Canadian

Psychiatric Association

Association des psychiatres


Perspective du Canada

The Canadian Journal of Psychiatry /


La Revue Canadienne de Psychiatrie
“For Their Own Good”: A Response to 2018, Vol. 63(7) 451-456
ª The Author(s) 2018
Popular Arguments Against Permitting Reprints and permission:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/0706743718766055
Medical Assistance in Dying (MAID) TheCJP.ca | LaRCP.ca

where Mental Illness Is the Sole


Underlying Condition
« Pour leur bien » : une réponse aux arguments populaires qui ne
permettent pas l’aide médicale à mourir (AMAM) lorsque la
maladie mentale est la seule affection sous-jacente

Justine Dembo, MD, FRCPC1,2, Udo Schuklenk, PhD3,


and Jonathan Reggler, MB BChir, FCFP4

Abstract
Canada is approaching its federal government’s review of whether patients should be eligible for medical assistance in dying
(MAID) where mental illness is the sole underlying medical condition, and when “natural death” is not “reasonably fore-
seeable”. For those opposed, arguments involve the following themes: capacity, value of life, vulnerability, stigma, irre-
mediability, and the role of physicians. It has also been suggested that those who are able-bodied should have to kill
themselves, even though suicide may be painful, lonely, and violent. Opponents of MAID for severe, refractory suffering due
to mental illness imply that it is acceptable to remove agency from such patients on paternalistic grounds. After years of
efforts to destigmatise mental illness, these kinds of arguments effectively declare all patients with mental illness, regardless
of capacity, unable to make considered choices for themselves. The current paper argues that decisions about capacity must
be made on an individual-patient basis. Given the rightful importance granted to respect for patient autonomy in liberal
democracies, the wholesale removal of agency advocated by opponents of a permissive MAID regime is difficult to reconcile
with Canadian constitutional values.

Abrégé
Le gouvernement fédéral du Canada s’apprête à examiner si les patients devraient être admissibles à l’AMAM lorsque la
maladie mentale est le seul problème médical sous-jacent, et que la « mort naturelle » n’est pas « raisonnablement prévisible ».
Pour ceux qui s’y opposent, les arguments s’articulent sur les thèmes suivants: la capacité, la valeur inhérente de la vie, la
vulnérabilité, les stigmates, l’irrémédiabilité, et le rôle des médecins. Il a aussi été suggéré que les personnes qui sont valides
devraient se donner elles-mêmes la mort, malgré que le suicide soit douloureux, solitaire et violent. Les opposants à l’AMAM
pour des souffrances graves et réfractaires attribuables à la maladie mentale laissent entendre qu’il est acceptable de retirer ce
service à ces patients pour des motifs paternalistes. Après des années d’efforts en vue d’éliminer les stigmates de la maladie
mentale, ce type d’arguments déclare effectivement que tous les patients souffrant de maladie mentale, quelle que soit leur

1
University of Toronto, Toronto, ON, Canada
2
Thompson Anxiety Disorders Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
3
Department of Philosophy, Watson Hall 309, Queen’s University, Kingston, ON, Canada
4
Courtenay Medical Associates, Courtenay, BC, Canada

Corresponding Author:
Udo Schuklenk, PhD, Queen’s University, Watson Hall 309, Bader Lane, Kingston, ON, K7L 3N6, Canada.
Email: [email protected]
452 The Canadian Journal of Psychiatry 63(7)

capacité, sont incapables de faire des choix réfléchis pour eux-mêmes. Le présent article allègue que les décisions en matière
de capacité doivent être prises sur une base individuelle des patients. Étant donné l’importance légitime accordée au respect
de l’autonomie des patients dans les démocraties libérales, l’élimination totale du service revendiquée par les opposants à un
régime permissif de l’AMAM est difficile à concilier avec les valeurs constitutionnelles canadiennes.

Keywords
mental illness, depression, vulnerability, autonomy, euthanasia, assisted suicide, medical aid in dying

Introduction – A Word on Paternalism should be legal “for a competent adult person who 1) clearly
consents to the termination of life and 2) has a grievous and
Patients with mental illness are usually portrayed by oppo-
irremediable medical condition (including an illness, dis-
nents of permissive MAID (medical assistance in dying)
ease, or disability) that causes enduring suffering that is
regimes as exceptionally vulnerable. It is argued that
intolerable to the individual in the circumstances of his or
because their decisional capacity can be challenging to her condition.”8 An ethical defence of these criteria was
assess, they should never be considered for MAID unless
provided in a lengthy report produced by a Royal Society
they are imminently dying.1,2 Those in good physical health
of Canada expert panel years earlier.9 Canada’s government,
are therefore expected to either try every possible treatment
though, decided not to make MAID available to all patients
available, wait for a cure to be developed, continue suffering,
meeting SCC criteria; instead it limited eligibility to patients
or end their own lives.3,4
whose natural deaths are “reasonably foreseeable.”10 The
Most of these arguments spring from a single source in
term “reasonably foreseeable” was used instead of providing
medical ethics: paternalism. The justification for paternalism
a specific time frame, such as the 6-mo prognosis require-
in health care is based on the beneficence principle. Doctors ment in some US jurisdictions. The government wanted to
aim to benefit their patients, much like good parents would
recognize that individual circumstances—including but not
their children. Beneficence is supported by most mainstream
limited to degree of suffering and type of trajectory toward
theoretical approaches in bioethics.5
death—vary.11 This eligibility threshold affects 2 groups of
There is a consensus in medical ethics and law that some
patients: people with mental illness as the sole underlying
paternalism is uncontroversial. It is the kind of paternalism
medical condition in the absence of a terminal physical con-
where we stop drunk party-goers from driving. We would
dition, and people with non-terminal physical illness who do
not only be concerned about their potential to harm others
not have other factors, such as age or significant co-
but also to harm themselves. This is where “weak” or “soft” morbidities, that make death foreseeable.
paternalism comes in: we override incompetent patients’
The Government’s justification for the narrowed eligibil-
choices to serve their objective best interests.
ity criteria for MAID include 1) the need to “affirm the
Proponents of a prohibition on MAID for all non-
inherent and equal value of every person’s life and avoiding
terminally ill psychiatric patients need to justify “strong”
encouraging negative perceptions of the quality of life of
paternalism: the overriding of a competent individual’s
persons who are elderly, ill or disabled”; 2) the concern that
choices for what the paternalist considers to be the individ-
“vulnerable persons must be protected from being induced,
ual’s own good. Here it would be necessary to show that to
in moments of weakness, to end their lives”; 3) the recogni-
override a competent psychiatric patient’s decision to seek tion that “suicide is a significant public health issue that can
MAID is always the right decision. This is a consequence of
have lasting and harmful effects on individuals, families and
the weight we rightly ascribe in a liberal democracy to our
communities”; and 4) that it “strikes the most appropriate
right to self-determination.
balance between the autonomy of persons who seek medical
Errors with respect to MAID are possible for any patient,
assistance in dying, on one hand, and the interests of vulner-
including those with solely a mental illness.6 However, there
able persons in need of protection and those of society, on
is good reason to doubt the validity of existing analyses in
the other.”11
support of concerns about the slippery slope-type abuses of
the vulnerable.7 The same worry has unsuccessfully been
deployed against MAID for physical illness. A more appro- MAID and Suicide
priate response to such worries would involve the implemen-
tation of rigorous safeguards in the process of eligibility and There is a widely held, but mistaken, notion that permit-
capacity assessments. ting MAID in populations where death is not reasonably
foreseeable increases suicide rates in general or leads to
premature death.
Because the SCC criteria neither excluded mental illness
Why “Reasonably Foreseeable”? nor required a reasonably foreseeable death, government
The Supreme Court of Canada (SCC) ruled that the banning would need to show that including mental illness would
of physician-assisted death was unconstitutional and that it increase the suicide rate, but existing evidence does not
La Revue Canadienne de Psychiatrie 63(7) 453

support this. Data from jurisdictions where MAID is avail- the affected individuals can assess whether it is
able to these populations do not show an increase in suicide intolerable.20,21
rates. Lowe and Downie analysed these data in 2017,12 in The bias inherent in arguments made by those who might
challenging a faulty analysis by Jones & Paton,13 whose support MAID in non-terminal severe physical illness but
paper has been cited by opponents of MAID as evidence that not in severe mental illness is that suffering in the former
MAID increases suicide rates. Lowe and Downie analysed group is more unbearable than in the latter. However, the
OECD (Organization for Economic Cooperation and Devel- intensity of suffering in severe mental illness can be equal to
opment)14 statistics for non-assisted suicide in Switzerland, that of the most severe physical conditions. For example, in a
Belgium, the Netherlands, and Luxembourg. They found large study of subjective wellbeing in Berlin, the authors
that overall, suicide rates either stayed the same or decreased found only end-stage liver disease (a devastating and immi-
after MAID legislation pertaining to sole mental illness was nently lethal condition which only liver transplantation can
passed in those jurisdictions. A 2014 Swiss government reverse) was subjectively as severe as mental disorders.22
report shows that the suicide rate per 100,000 individuals Mental suffering can frequently cause severe disability and
has decreased steadily since before the introduction of this premature death from medical illness and suicide.23 We have
legislation.15 no reason to think that decisionally capable psychiatric
patients’ evaluation of their quality of life is more unreliable
than that of other decisionally capable patients.24 Canadian
Capacity courts recognise that suffering in mental illness can be
It is well established that all adult patients are presumed unbearable; in the case of Canada vs. EF (plaintiff),25 the
capable with respect to medical decision making unless pro- Alberta Court of Appeal granted MAID due to severe pain
ven otherwise.16 One study using the most well-validated and disability arising from a conversion disorder. EF
standardised capacity assessment tool, the McArthur Com- received MAID when it was briefly permissible through a
petence Assessment Tool for Treatment (McCAT-T), estab- court ruling using the Carter criteria; however, she would
lished that 70% to 80% of involuntarily hospitalised patients now not be eligible for MAID.
with mental illness are capable with respect to treatment With respect to irremediability, although it is impossible
decisions.17 By diagnosis, capacity can vary; another study to predict response or remission with certainty,26 capable
using the McCAT-T indicated that only 4% of patients with a patients should have the right to make their own judgments
personality disorder lacked decisional capacity, whereas based on the best evidence available at the time of decision
80% of patients with acute psychosis due to schizophrenia making. Mental illness can certainly be irremedi-
lacked capacity.18 Among those with severe unipolar depres- able.27,28,29,30 In the case of major depression, the STAR*D
sion, in this same study, only 31% lacked capacity. Of note, study conducted by the National Institute of Mental Health
the above studies evaluated acute inpatients; outpatients (NIMH), indicated that 30% or more of patients did not
likely have higher rates of capacity with respect to treatment, respond to multiple sequential medication trials, and of those
though studies in this area are lacking. who did respond, up to 70% relapsed within 1 y.31 Patients
Capacity must be assessed on an individual basis. Any who fail repeated medication trials, hospitalisation, and psy-
regime in which MAID is permitted for refractory mental chotherapy sometimes go on to try neurostimulatory treat-
illness requires careful safeguards, given that mental illness ments, such as electroconvulsive therapy (ECT), transcranial
can unduly influence a desire to die. However, to exclude all magnetic stimulation (TMS), or deep brain stimulation, all of
individuals requesting MAID for psychiatric illness in the which can be effective to some extent; but none are 100%
absence of a terminal physical condition falsely implies that effective. A recent study examining different types of ECT
everyone in that category lacks capacity. indicated response rates between 55% to 64%;32 response to
TMS was 29% in a recent meta-analysis;33 and deep brain
stimulation, according to a Canadian sham-control trial, can
Suffering, Irremediability, and Autonomy achieve a 6-mo response rate of 48% and a 12-mo response
Not only is the term “quality of life” ill-defined, but views rate of 29%.34 Furthermore, the rates of response in patients
vary widely about who should determine whether a life’s who then proceed to ablative surgeries, such as capsulotomy,
quality is acceptable. In Western medical culture, until are only about 50%.35 Therefore, individuals with refractory
recently, this difficult decision often lay in physicians’ mental illness who have undergone many years of unsuc-
hands.19 However, this is no longer the case. Patient auton- cessful therapeutic efforts are not necessarily irrational when
omy is now one of the core principles of medical ethics and they feel recovery is unlikely, or when they refuse to wait for
law.19 Patients are encouraged to assert what “quality of life” therapeutic advances whilst experiencing intolerable
means to them. The type of illness affecting quality of life is suffering.
immaterial. Judgments about suffering, irremediability, and The possibility of new and better treatments arising from
quality of life are closely intertwined, and capable patients research and development (R&D) understandably leads to
rightly define these terms as they apply to their own unique caution amongst regulators and clinicians. If someone with
situations. Because suffering is a personal experience, only refractory depression has a life expectancy of decades,
454 The Canadian Journal of Psychiatry 63(7)

would it not be reasonable to ask them to live on in hope that Let Them Kill Themselves
therapeutic R&D would succeed during their lifetime? Capa-
Some psychiatrists opposed to MAID for those with sole
ble patients with mental illness should certainly consider this
psychiatric illness have argued that these patients do not
possibility in their decision making; however, they must not
need access to MAID because they can terminate their own
be forced to wait indefinitely.
lives at their own volition. As Maher puts it: “On this view, a
The Carter decision was clear that “irremediable” does
doctor is really a sanitized version of a gun. But no matter
not only refer to the statistical probability of survival with an
how you parse it out, people living with mental illness can
illness but also to “enduring physical or psychological suf-
swallow their own suicide pills.”4 Maher is correct on the
fering that is intolerable to [the individual] and that cannot
latter point but that is not in question. Patients’ eligibility for
be relieved under conditions that they consider
MAID does not depend on their ability to commit suicide.
acceptable.”36 Patients are permitted to refuse treatments
MAID is available to able-bodied, non-psychiatric, eligible
which might otherwise prolong their lives or even reverse
patients. It is difficult to accept at face value expressions of
the disease process. It is unjust to apply different standards to
concern about conveniently labelled “vulnerable” psychia-
capable people with true refractory mental illness.
tric patients but then to have them asked to resort to grue-
some suicide methods in lieu of providing MAID.

Vulnerability
Conclusion
Much is made by proponents of the current restrictive MAID
regime of psychiatric patients’ “vulnerability”. That same Throughout much of history, society and medical profes-
label was initially liberally deployed by anti-choice activists sionals have made judgments on behalf of people with
opposed to MAID generally. In their interpretation all severe mental illness, with the benevolent intent of making
patients were vulnerable, potential targets of abuse, and in decisions in their best interests. The MAID debate now high-
need of protection against that potential abuse, and they lights where strong paternalistic values persist in psychiatry.
should not be given the option to choose MAID. The SCC When an individual is clearly incapable with respect to med-
disagrees that all patients are sufficiently vulnerable as to ical decision making, medical professionals and substitute
render them unable to make decisions that are substantially decision makers must step in. However, capacity must be
autonomous. Bioethicists are highly critical of the vagueness determined on an individual basis. It is unjustifiable to
of the label and its propensity to stereotype groups of quite exclude psychiatric patients from benefitting from a medical
diverse patients.37 Indeed, it is doubtful that the label sig- intervention that is designed to preserve autonomy and
nifies a universally agreed-on concept at all. Rhodes writes, reduce suffering, without giving due consideration to indi-
“Instead of trying to respect the autonomy of others by pre- vidual variability.
suming that they are autonomous and trying to see their
choices as reasonable from their perspective, classifying Declaration of Conflicting Interests
people as ‘vulnerable’ denies them respect.”38 The vague- The author(s) declared the following potential conflicts of interest
ness of the “vulnerability” trope upon which proponents of a with respect to the research, authorship, and/or publication of this
restrictive regime trade makes its use problematic. The vul- article. Dr. Dembo declares an unpaid/volunteer position on the
nerability rhetoric has not been without harmful conse- Physicians Advisory Council for Dying With Dignity Canada,
quences in the history of medicine.38 an organization that had no role in the production of this paper.
In the context of psychiatric patients—all psychiatric Dr. Schuklenk reports no conflicts of interest. Dr. Reggler declares
patients no less—vulnerability rhetoric is used to remove unpaid Board memberships with the Canadian Association of
MAID Assessors and Providers, Dying With Dignity Canada
agency from a large group of diverse patients, including
(DWDC). Dr. Reggler also declares an unpaid position as Chair
patients with decisional capacity. All members of this
of Dying With Dignity Canada’s Physicians Advisory Council.
already highly stigmatized group are treated as decisionally
incompetent regardless of their individual circumstances.
This is achieved by labelling all members of this group Funding
“vulnerable.”7 It is incoherent that these same patients The author(s) disclosed receipt of the following financial support
are—at the time of writing—eligible for MAID, if they meet for the research, authorship, and/or publication of this article: US’s
the “reasonably foreseeable” standard by virtue of their age Research Chair is funded through an endowment granted to
Queen’s University by the Province of Ontario.
or co-morbidities. The Council for International Organisa-
tions of Medical Sciences, in the most recent edition of its
preeminent international research ethics guidelines, has References
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