I am a big fan of the CANADALAND network. Originally a media criticism podcast, the company has branched out to include coverage of a variety of under-investigated topics in Canadian media. I really enjoy their news reporting and analysis, their dedication to telling stories from Indigenous perspectives, and how they hold Canadian mainstream media accountable. It happens to be funding drive month at Canadaland, so I encourage anyone reading this to check out their work (which is all freely available to the public) and consider subscribing. Their model of crowd-funded independent media is admirable and worth supporting.
This week’s Monday podcast episode was a fantastic exposition of the ethical issues surrounding recent changes to Canada’s legislation regarding medical assistance in dying (MAID). Today I want to review this episode, and touch on what the issue of medically assisted death means to me as a psychiatric survivor. I hope to give the topic of MAID and madness greater attention in a separate post at a later date.
MAID is controversial for obvious reasons – death is an uncomfortable and taboo subject, and choosing to end one’s life even moreso. Parallels are drawn between MAID and suicide, the latter being generally regarded as a tragic, unacceptable, and entirely avoidable end to one’s life, which motivates worries about MAID being a policy that enables avoidable deaths. While the Canadian public appears to generally support MAID policies in some contexts, there remain serious unaddressed ethical issues surrounding recent legislative changes.
In order to qualify for MAID, a patient would previously have had to be facing a foreseeable death involving suffering that could be avoided through access to a medically assisted, dignified and peaceful death. Since a new bill passed in March 2021, it is no longer the case that a patient’s death must be foreseeable. This change came about after a supreme court challenge that ruled in favour of two severely disabled Canadians who sought MAID in order to die in dignity and avoid prolonged suffering.
The episode does not go into details regarding this supreme court ruling, but let’s assume that, generally speaking, this ruling was a positive one in that it expanded access to a medical procedure that previously unfairly excluded disabled people whose condition involves prolonged and avoidable suffering but not an immanently foreseeable death. Taking for granted that disabled people who want to end their life on their own terms ought to have the right to do so, this ruling still presents some urgent ethical questions.
Ethically administered MAID would never be appropriate for patients who want to live, but that is precisely the case that is described in the episode by Madeline, a woman in her 50s whose chronic illnesses have made life, not unbearable, but unaffordable. Madeline is able to enjoy a nominal quality of life with the assistance of alternative naturopathic treatment – a controversial practice, as reporter Cherise Seucharan points out – but given the lamentable rates of provincial disability support in British Columbia, she is nearing the end of being able to afford that treatment, which is not covered by government health insurance.
The story of Madeline describes how woefully underfunded research into chronic illness is, leaving patients abandoned by mainstream medical care and forced to seek alternative treatments that may be expensive, unproven, and ineffective. Adding insult to injury, income supports for disabled people are difficult to access and categorically inadequate even to support people at the peak of health. Madeline describes the maddening frustration of being trapped between illness and poverty perfectly:
I can’t manage on this amount of money, and again I felt like a failure. Because the system is acting like you can live on $1000 less than a healthy person, and I’ve now come to the conclusion that this is the amount of money that a healthy person becomes disabled on, so of course as a disabled person I’m deteriorating. It’s like if I came out of the desert and I’m dying of thirst, and somebody hands me a thimble full of water and says “maybe I’ll give you another one tomorrow,” and expects me to be okay, to not fall apart. So there’s been just such large-scale discrimination built into the lack of support.CANADALAND Ep. 723 – The High Cost of Living (Oct.25 2021)
It’s heartbreaking to hear this account and to know that it represents the plight of many disabled and chronically ill Canadians. Many of these people, like Madeline, can live full and happy lives with the right supports, but across the country access to treatments and aid are difficult to access, and income supports are a pittance compared to the increased costs of living that burden some of the most vulnerable people. Without access to government-funded medical support, people like Madeline end up relying on friends and family, or crowdfunding platforms like GoFundMe, where as Madeline puts it, she is “begging for my life on the internet.”
These scenarios were foreseen and the federal government was warned that the most recent MAID bill would result in what would effectively be seen as euthanasia for some of the most marginalized patients, people who are struggling to find adequate housing, medications, social supports, and so on. The episode points out that 30% of disabled Canadians are living in poverty today, and we hear first-person reports from disabled and chronically ill Canadians of the discrimination and abuse that is routine in their daily lives, both in and out of medical care. Disabled Canadians are therefore some of the most vulnerable when it comes to the risk of being coerced into MAID against their wishes.
We hear from one disabled woman who testified in front of the parliamentary committee debating the new MAID bill that:
“The government is effectively saying, or at least this is how I’m interpreting it, is that it’s so awful, it’s so horrible to live a disabled life, that it’s easier for them to just offer us MAID. And that is just incredibly heartbreaking of course, because they’re making it more accessible for us to die than they are for us to live, and I’m starting to get so tired of being reminded every single day that society truly, most of the time, just wants us dead.”
And we hear from a psychiatric doctor with serious concerns about providing MAID to a certain demographic of patients, under legislation that was intended to capture an entirely different demographic:
I think it’s dangerous to provide death for one reason when we’re pretending it’s being provided for another reason. What we’re actually doing is – for some populations, that [professed reason] might be true, but that tends to be the more privileged populations who’ve had a chance to live with dignity. For marginalized populations who are struggling with poverty, with loneliness, with access to care – for those marginalized populations we’re saying we will provide you death that’s easier, death with dignity, but society’s never given them a chance to live with dignity.
The same clinician goes on to point out the horrible truth about these policies from the perspective of neoliberal economics: it is more “cost effective” to provide MAID than to provide care. What this highlights to me is that we have an economic system that, by design, devalues the lives of disabled, mad, neurodivergent, and chronically ill people. In other words, the society we live in reduces the value of a human life to its capacity to generate capital and circulate that capital into the economy, and it misrepresents or flat out denies that every person, every human life, has innate value that deserves to be cherished and protected. These value judgements may be entirely unintended, which is to say that there isn’t a group of people in government conspiring to find the best way to eliminate disabled and chronically ill people from society – but the reality is perhaps in some ways even more horrifying. Without even realizing it, good-meaning people trying to do the right thing have invented a system where there are sometimes greater incentives to allow someone to die, based on their economic value to society, rather than to support that person’s wish to enjoy a dignified life.
Towards the end of the episode, we hear further concerns about still more changes forthcoming to Canada’s MAID legislation, regarding expanding the regime to include people with mental illnesses. Previously, mental illness on its own would not be sufficient for accessing MAID. A patient would need to have some other condition that presented a foreseeable risk of death to be considered. With the forthcoming changes, that will no longer be the case, and this is truly stunning to me. People like myself who have been diagnosed with depression, or anxiety, or bipolar disorder, among other mental health diagnoses, will soon be eligible for consideration for MAID.
It’s devastating to see these changes occur without greater public attention to the moral issues they bring up. Generally speaking, I don’t think we understand mental illness nearly well enough to be making any determinations regarding whether a patient who falls under that category will be capable of recovery or not, and allowing a patient to end their life under the assumption that recovery is impossible is ethically dubious to say the least. More importantly, mental illness is tied up in social, environmental, and other factors, most notably poverty and social isolation, for which there is no medical treatment, but for which social interventions may be extremely helpful. In other words, a person may theoretically be depressed because of a biological disease, although considerable debate remains over the legitimacy of bio-reducible mental illnesses of this sort, but that same person may also be depressed because of traumatic experiences, social and emotional neglect, chronic exposure to unsafe living situations, abuse, poverty, and so on. Are we really going to become a society which accepts that it is okay to let people die who are suffering in entirely avoidable and reversible ways, just because it’s cheaper?
I have complex views about MAID, partly because I have been depressed, I have been in severe emotional distress, and I have been actively suicidal. Although I am overwhelmingly grateful to be alive today, I haven’t always felt that way, and there was a time when access to MAID would have felt like a solution to my own suffering. Moreover, because anti-depressants and therapy didn’t seem to help my depression as an adolescent, I was branded “treatment-resistant” – would that have qualified me for consideration for MAID? Without closely inspecting the proposed legislation, I’m willing to bet that my age would have prevented me from accessing a medically assisted death. But at the same time, if I had wanted to access MAID and been refused, this would certainly have felt like an injustice in the absence of any other meaningful support. From the perspective of my suicidal adolescent self, the ethical issues are just as urgent, yet reversed.
All of this represents yet another argument for a universal basic income program, or at least some kind of easily accessible and generously funded disability support benefit that Canadians can access in order to help them meet basic needs and access care. The dignity of a life well lived should not be a privilege only enjoyed by the wealthy and abled. Disabled people, neurodivergent people, mad people, mentally ill people, chronically ill people – every human being deserves a dignified life, and a dignified death. It is morally unforgivable to be offering the most vulnerable in our society a dignified death, without ever giving them a chance to enjoy a dignified life.