The thorny question of equality in the context of physician-assisted dying

Sunday, April 3, 2016

By Jennifer A. Chandler

Respect for the principles and legal requirements of equality and non-discrimination raise particular challenges in the context of physician-assisted dying (PAD). 

Throughout Canada’s long national conversation about PAD from the Supreme Court’s decision in Rodriguez to the recent Carter decision declaring that the criminalization of PAD was unconstitutional in certain circumstances, a continuous theme has been the human rights of people with disabilities.  Arguments for and against PAD have both relied upon claims to the equality of persons with disabilities in different ways. 

Claims to self-determination of those with disabilities have been raised in favour of decriminalizing PAD.  The Alliance of People With Disabilities argued before the Supreme Court in Carter that the right to equality of persons with disabilities who are of sound mind but unable to end their own lives is violated by the criminalization of PAD.  Unlike others who are able to choose and control the circumstances of their own deaths, people with certain disabilities are precluded by law from doing so because they cannot access the necessary assistance.  The Alliance pointed to the psychological suffering of those with progressive diseases who face the knowledge that they will eventually become physically unable to end their own lives without help.  The Alliance rejected as paternalistic the idea that PAD should be withheld to protect people with disabilities from being coerced into consenting to it:

“An absolute prohibition on physician-assisted dying that rests on the concern that such a practice would threaten people with disabilities, due to their particular potential vulnerability and susceptibility to coercion, denigrates and is paternalistic of the disability community. To contend that the mere fact of physical disability renders otherwise autonomous decisions less than fully autonomous not only perpetuates prejudice but also fails to correspond with the actual circumstances of persons with disabilities.”

At the same time, the fear that vulnerable people with disabilities, whose quality of life is often undervalued by others, will be encouraged to consent to PAD has led to contrary arguments.  The Council of Canadians with Disabilities and the Association for Community Living argued against decriminalization, citing the undeniable fact that “people with disabilities are vulnerable to society’s ‘prejudice, negative stereotypes and societal indifference.””

“The common law paradigm of individual autonomy and self-determination to characterize the “choice” made by a person who is dependent on others for treatment and care is problematic and misleading.  Because of the nature of the decision and the circumstances in which it would be made, the CCD/CACL agree that “It would be next to impossible to ensure that all acts of euthanasia were truly voluntary.””

The problem of respecting individual autonomy within a broader social context in which that individual choice is often unfairly constrained, is at the heart of this disagreement.  This same problem plays out when one considers the recent discussion of whether PAD should be available to people who are suffering from psychiatric illnesses alone (i.e. without an accompanying “physical” illness).

The federal government’s Special Joint Committee looking at physician assisted dying released its long-awaited recommendations in February to much debate.  It recommended that competent adults suffering from psychiatric illnesses should also have access to PAD, and questioned how a person “could be denied a recognized Charter right based on his or her mental health condition.” 

Indeed, refusing access to PAD by those who are competent and otherwise fit the eligibility criteria on the basis that their illnesses are psychiatric rather than physical would seem to contravene the Supreme Court’s position in the Battlefords and District Cooperative Ltd. case.  In that case, a woman successfully challenged an employer’s disability insurance policy that provided inferior terms of coverage for mental as opposed to physical disabilities that precluded resumed employment.  The Supreme Court found the policy to be discriminatory, citing the “abundant support for the view that the mentally disabled have suffered from historical disadvantage and negative stereotyping,” and treatment that “sets them apart from disabled persons generally.”

On the other hand, it is clear that the public is gravely concerned about opening access to PAD for people with mental illnesses.  A poll released on April 1, 2016 showed 78% of Canadians are opposed to allowing this.  Public attitudes do not settle the question of the scope of human rights and guarantees – one of the points of constitutional guarantees such as those set out in the Charter is to ensure that the majority is required to respect certain basic individual rights and freedoms no matter how much the majority disagrees.  Whether there are justifications for limiting this Charter right specifically for people with mental health disabilities rather than other kinds of disabilities remains to be seen.

The broader context of PAD for mental illness is also worth noting.  Inequality in access to health care resources is an important part of the context of debates over PAD.  If alternatives to PAD – such as good quality palliative care, mental health care and social supports – are unavailable or inadequate, it may be that the best option facing a person is to seek PAD.  In this way, inequities in access to care and support, reflecting the imbalances in political power of the relevant patient groups, would form an important part of the context.   On this point, wait times to access psychiatric care for serious mental illness in Canada are unknown, but are thought to be too long.  The Mental Health Commission of Canada has argued that we have had “years of underfunding of mental health” in Canada.  In 2007, the Wait Time Alliance and the Canadian Psychiatric Association proposed benchmark wait times for access to psychiatric services for people with serious mental illnesses.  Yet according to their 2015 report, provinces have yet to even publish wait time data for psychiatric care.  In the meantime we have worked hard and succeeded in reducing wait times for hip and knee replacement, cataract and bypass surgery, radiation therapy and diagnostic imaging.  If we do not even have data about psychiatric care, it is difficult to make progress in assessing and improving care.

Another important question from the perspective of equality is why it appears that  women form a majority of cases of PAD for psychiatric purposes where this is practised.
An article published earlier this winter in JAMA Psychiatry reviewed 66 cases of medical aid in dying provided to people with psychiatric illnesses in the Netherlands between 2011 and 2014.  The review found that most of these cases were women (70 percent) with chronic severe conditions, and 56 percent were described as socially isolated or lonely.  As Dr. Paul Appelbaum commented in an editorial accompanying the article, these results raise “the concern that physician-assisted death served as a substitute for effective psychosocial intervention and support.”  There are various reasons why women may be over-represented.  Men have a much higher suicide rate than women, and it is possible that those who wish to die will commit suicide themselves instead of resorting to the assistance of physicians.  Another possible explanation is a difference in access to the care and social support that might offer a viable alternative to suicide. 

Ultimately, the issue of access to adequate care and support shows that arguments based on equality emerge as factors that complicate the more straightforward autonomy-based argument about access and choice.  This is the case for both physical and mental health disabilities.  Respect for autonomy is vital regardless of the nature of the disability, but the broader context in which choices are exercised also has important equality-related implications and must be considered.

Jennifer A. Chandler is the Bertram Loeb Research Chair and Associate Professor at the Centre for Health Law, Policy and Ethics, Faculty of Law, University of Ottawa.

Designed by Rachel Gold.