This blog is part of "Monitoring Matters", a special series of guest blogs by VPS Advisors.
By Jonas Beaudry, VPS Advisor
As an academic, my research has centered around human rights and disability studies. I analyze public policies on health and disability through a philosophical lens. Medical aid in dying (MAiD) is a fecund topic because it involves debates around very controversial concepts, such as life, autonomy, vulnerability, dignity and caring. Those concepts are susceptible to very different and contradictory interpretations. Achieving clarity about what people mean when they use these concepts is important in order to move forward.
I first realized the need for theoretical research on the matter when I attended a meeting organized by the Canadian Association for Community Living (CACL) shortly after the Supreme Court of Canada issued its decision in Carter. Throughout the course of this meeting, various representatives of people within the disability community expressed concerns about the legality of medical aid in dying. Going back to the Carter decision, I realized that many of these concerns had been answered by our Courts with some version of an argument that can be summarized in the following way: “It is reasonable to expect that proper safeguards will take care of your concerns: a full ban on MAiD is unnecessary”.
This claim became the leitmotif of the original trial judge and eventually of the Supreme Court judges in Carter. The Carter decision held that our governments must strike a balance between the interests of people who wish to access MAiD and the interests of people who are vulnerable to unwanted assistance in dying. It placed a lot of trust, therefore, in “safeguards”. The general public has been embroiled for so long in the “pro versus con”, all-or-nothing, euthanasia debate, that it could easily forget that what we could call the “Carter compromise” is not about making MAiD legal or not. It is the beginning of a discussion about how to best respect the rights of all Canadian citizens in the context of MAiD.
Monitoring the social determinants of autonomy in the context of MAiD
I took a closer look at what those safeguards would look like in order to assess whether they addressed the concerns expressed by a number of voices within the disability community. Those safeguards are meant to ensure that people undergoing MAiD will not be directly or subtly coerced into dying. However, the safeguards in and of themselves do little to address many important factors that motivate people to die – factors such as social isolation, hopelessness, lack of self-worth, or a sense that one is a burden.
Why are safeguards not addressing these issues? Is this not the Carter compromise? What about the rights of those who may have been nudged into dying because the range of their social options has been limited in such a way that suicide appears to be the most reasonable option, to them and to others?
A reason too little attention has been paid to such hard questions is that it is difficult to determine what factors actually motivate people to die in the context of MAiD, and what could be done through social kinds of support that would respect individual autonomy. Very little research has been carried out, in part due to the novelty of this framework, and in part because there is no legal obligation to closely monitor such factors. Without this important information, researchers and governments can hardly draw substantive conclusions regarding the factors that are operating in the minds of individuals in the context of MAiD. Nor can they begin to establish what kinds of social and medical supports require investment.
A common objection to the concerns raised here is that most people asking for MAiD are literally about to die and nothing much can be done for them through social intervention. However, this is hardly a justification for ignoring the fate of those who can be helped and understanding the social measures that can help them. Moreover, not everyone who receives MAiD otherwise faces imminent death; the requirement of “reasonably foreseeable” death includes a broader swath of the population. In any case, other jurisdictions extend assisted dying to people with mental illness, children, and people who are not imminently dying and our own government is exploring whether to (and to what extent) they should expand access to MAiD.
Monitoring suicidality within an ableist and ageist culture
I also think that MAiD should be studied in the broader context of our ableist culture. Instead of being conceptualized as a simple modality of death or medical treatment, MAiD has the potential to be a framework for evaluating quality of life, whereby some suicidal individuals will be cared for through suicide prevention and others will be cared for by suicide assistance. These new medical and legal practices may well be constituting a category of “reasonably suicidal subject” in our culture and our law. MAiD frameworks risk formalizing important shifts in values and in the social means we take to protect them. Those social processes should be closely analyzed. The creation of any legal category that would legitimize treatments considered as harmful if imposed on others, ought to set off alarm bells amongst citizens and scholars policing the emergence or repackaging of discriminatory frameworks. Ableism and ageism are real, harmful ideologies pervading the nooks and crannies of our culture and the impact of MAiD on these groups must be closely monitored if we aim to take equality seriously.
This is why it seems reasonable to think that monitoring the situations of people requesting MAiD will help our governments in designing policies that ensure people choosing MAiD are given sufficient social support and access to meaningful alternatives, including not only palliative care, but also opportunities to ease feelings of hopelessness, isolation or burdensomeness. We need to understand the suicidality of people contemplating MAiD and their responsiveness to social measures just like we would for other groups targeted by suicide prevention, such as Indigenous youth. Few would assume that Indigenous people, or people of any particular ethnicity, gender or religion, are “better off dead”. By contrast, the notion that the lives of old, sick or disabled people are “less worth living” is one of the most damaging and longstanding ableist and ageist belief in our productivity-obsessed culture. This is the political and legal context within which this new medical tool (MAiD) has been launched. Monitoring its evolution, use and impact would go a long way towards attenuating concerns associated with a macroscopic, cultural, view of MAiD.
Monitoring would also assuage concerns anchored in a microscopic view of MAiD processes and of the psychology of MAiD users. Research has long supported a somewhat intuitively obvious finding: people who become older, disabled, or gravely or terminally ill may enter into a depressive state and engage in suicidal ideation if they find themselves cut off from the relationships and roles that once provided their lives with meaning, self-esteem and satisfaction. This research has begun to explore how social environments and the availability of social support, social integration and sense of belonging affect people’s quality of life, depressive states, hopelessness, and desire to die. Maintaining a sense of dignity, remaining integrated in one’s community, continuing to have relationships and socially valued roles that give meaning to one’s life, and maintaining a relatively autonomous lifestyle are all goals that can potentially be achieved, at least partially, with proper psychological, social and economic support.
The connection between various kinds of support and motivations to die is indisputable. However, what is currently lacking is systematic collection and analysis of data concerning the motivations and circumstances of persons requesting MAiD. Without proper monitoring, the effectiveness of various kinds of support, safeguards and measures meant to improve people’s quality of life and autonomy will be invisible, if they occur at all. This is why we need a richer, more textured monitoring of how ableism and ageism can influence both the design of MAiD processes and all of its participants. Arguably, this endeavour is required by the “Carter compromise”, as a matter of constitutional rights, for people on both sides of the issue.
Monitoring enables dialogue and fine-tuning of safeguards
Finally, this collection of information matters because it enables a productive and respectful dialogue amongst Canadians about the important values of life, respect, equality and freedom. These are values that run deep in our political and legal culture. Monitoring facts – including the needs of people requesting to die – would allow us to avoid an adversarial tone between activists and scholars talking past one another as they respectively argue for the expansion and restriction of access to MAiD. Reasserting one’s own rights and needs and disregarding the rights and needs of others will not get us far in terms of policy-making.
A productive dialogue would also be facilitated by an other-regarding disposition: an attempt to feel genuine concern for the fears and sincere beliefs that our “opponents” (e.g. in pending litigations) have, such as the fear not to be able to die in a peaceful way, the fear of losing control over one’s life and one’s death, fears about the systemic and cultural impact and use of MAiD in a society still struggling with ableism and ageism, the concern that people are vulnerable to internalizing an ableist culture and that evolving social expectations may trigger or exacerbate, rather than curtail, their desire to die, etc.
There is hard empirical and conceptual work ahead to strike a fair balance between the rights and interests of everyone. Our Supreme Court has affirmed that safeguards can, in theory, suffice to strike this difficult balance. We now have a duty to monitor whether or not, in practice, they do. If they do not, governments equipped with empirical evidence can expand or adjust social policy, including MAiD safeguards, in an informed manner, notably by ensuring that they curtail the insidious impact of ageism and ableism. Our social duty to ensure that MAiD does not contribute to harming vulnerable members of our society in any way is robustly anchored in constitutional rights and it is the essence of the “Carter compromise”.