Peter, What Are You Reading? - Medical Aid in Dying Edition
I decided to dig in to some of the academic literature on the disability community's historical opposition to MAiD. Here I share with you some of what I've read/am reading:
After having my Medical Aid in Dying piece published by the CBC’s Opinion section
I received a fair bit of push-back from disability activists online, much of it expected, some of it not. I knew I was going to get some push back - after all, I had explicitly gone after online disability activists for handing over opposing arguments to right wing conservatives who have no actual interest in improving the lives of people with disabilities. What I didn’t realize at the time - and this is a failure of mine - was that disability rights organizations have traditionally been opposed to Medical Aid in Dying, going back to the late 1990’s. Indeed, the organization Not Dead Yet was founded in 1996 in an effort to put forward secular, social justice based arguments against the ‘mercy killing’ of people with disabilities. What made the Canadian context different - and it is my mistake for thinking that this was how the right to die had come about wherever it exists - is that it was led by people who had disabilities, rather than by other sections of the population.
Sections:
A Good Death / Our Lives and Ideologies: The Effect of Life Experience … / Disability Arguments Against Assisted Dying Laws / Medical Assistance in Dying for Canadians: Joint Special Committee Report / The Death of Others: Neo-Liberal Thanatopolitics / Medical Aid in Dying: The Case of Disability
A Good Death: Making the Most of Our Final Choices - Sandra Martin
I am not currently reading this book - I read it in 2017, when I was only two years into my recovery from my own near-death experience. I am including it here because it is extremely influential in my thinking, and because it provides a necessary introduction to the Right to Die in the Canadian context. The author was, for most of her career, the obituary writer for one of Canada’s largest newspapers, the Globe and Mail, and so she had the pain (and some unexpected pleasures as well) of seeing death up close. Here is a short excerpt on Sue Rodiguez, a disabled woman with ALS, often credited as the woman who made it happen in Canada.
Before 1988, the Criminal Code prohibited a woman from having an abortion in an accredited hospital without first obtaining the approval of the institution’s therapeutic abortion committee. Writing for herself in concurrence with the majority in the Morgentaler decision, Justice Bertha Wilson, the first woman appointed to the Supreme Court of Canada, argued the law violated a woman’s right to security of the person under section 7 of the Charter. The decision to end an unwanted pregnancy, she argued, “is not just a medical decision. It is a profound social and ethical one as well.” The existing law, which took the decision away from the woman and handed it to a hospital committee, “asserts that the woman’s capacity to reproduce is to be subject not to her control, but to that of the state.” Based largely on the autonomy rights established in the Charter and this decision, Rodriguez claimed that it was her right to choose the time and manner of her death, and to have a doctor’s help if she were physically incapable of killing herself.
About the same time that the Charter was being drafted, the Law Reform Commission of Canada was considering many aspects of the law, including physician-assisted death, because advances in medical technology meant some patients were being kept alive with a greatly diminished quality of life. In its Working Paper 28, the commission came very close to recommending the decriminalization of assisted suicide, but in the end backed down and settled for a proposed addition to the Criminal Code requiring “the personal written authorization of the Attorney General before prosecuting somebody who helped a terminally ill person die for compassionate reasons.”
Our Lives and Ideologies: The Effect of Life Experience on the Perceived Morality of the Policy of Physician-Assisted Suicide (2005) - Ron Amudson and Gayle Taira - Journal of Disability Policy Studies
Obviously I have been primarily interested in the philosophical side of Medical Aid in Dying, partly because that’s the training I have and the discipline I know, and partly because I think that many of the concepts being used by both MAiD advocates and their opposition lack precision and clarity and would benefit from some philosophical thinking. This piece, however, is not a piece of philosophy, per se, in as much as it is a short interaction between a professional philosopher and a student of his on how they came to change their mind on assisted dying.
Professor Ron Amudson had this to say:
Now I will explain how my rejection of ableism led to my rejection of physician-assisted suicide. It came from listening to the arguments made by assisted-suicide advocates in support of their positions. At the core of these arguments are a few classical cases of people with serious disabilities who wanted to commit suicide. The assisted-suicide advocates’ use of these cases was blatantly ableist. They would describe the person’s impairments, in the most demeaning possible terms, and then ask “Wouldn’t you want to die if you were in that position?” Their ableism was obvious from the fact that they took the impairments themselves as the true reasons for the death wish. From my (new) perspective it was obvious that these people wanted to die because of their social situation, not because of their impairments. … I began to notice that when assisted suicide advocates really wanted to scare their audience, they didn’t use unremitting pain to do it. They used disability. The need for help to go to the toilet was the big stick. Wouldn’t you rather die than have someone else wipe your butt? It never seemed to cross these advocates’ minds that thousands of people in the United States get help to wipe their butts every day. Many of them are my friends. The blatant disdain and scorn that the assisted suicide advocates showed for people with real disabilities disgusted me. I began to see the smug slogan “Death with Dignity” in a new light: It hid the assumption that dignity was forever out of the reach of people who were disabled; “Better Dead than Disabled.” (emphasis added)
Gayle Taira told her own story of becoming disabled in a car accident and acquiring a traumatic brain injury (TBI). She recalls the first time she realized for herself that pro-MAiD advocates didn’t always have her best interests at heart:
I found myself in a wheelchair in an elevator with two health care professionals. One woman was taking me to a set of medical tests. The other had joined us in the elevator. The first began to describe a car accident to the second person. She described the injuries, and the cognitive difficulties that occur with TBI. The other woman said, “You know, I’d kill myself if that ever happened to me. I don’t want to end up like that.” Like what? I wondered. Then I realized that they were talking about me, right then, right there. It was my accident she was describing, and the second woman would rather die than end up like me!
I suddenly realized (with a shock) that I had completely missed a crucial aspect of the physician-assisted suicide issue. I had incorrectly assumed that the individual making the choice would be free from coercion and would be making a choice based on his or her own interests, free from the forced perspective of others. I had assumed that the choices being offered were indeed legitimate choices. Talk about fatal assumptions! Sitting in the wheelchair in that elevator, I realized exactly how fatal that assumption is: The very people whose job it was to care for me believed that I would be better off dead, and I was powerless to argue against them. (emphasis added)
Disability-based arguments against assisted dying laws (2022) - Ben Colburn - Bioethics
This paper is Open Access, which means that you don’t have to use Anna’s Archive or any of the other grey-market websites to find the paper, but can read it directly from from the journal Bioethics. More properly a philosophy paper, this short piece evaluates arguments made by disability rights organizations who opposed Medical Aid in Dying, finding that many of the claims in opposition simply cannot be justified by the facts on the ground. One of the most important causal claims made by disability rights organizations is that marginalized people will be ‘targeted’ for medical aid in dying programs. Colburn highlights a number of studies that show that this isn’t the case:
Rietjens et al. explored the characteristics of cases, including by looking for a correlation between vulnerability (including disability) and uptake of assisted dying. They found evidence of different kinds of end‐of‐life decisions between different demographic groups, but the only strong correlation they found in uptake was with higher levels of education. They considered the hypothesis that ‘due to legalisation the rates of euthanasia would increase in “vulnerable” patient groups’ and concluded that ‘there is no clear evidence for a slippery slope’ of this kind.
Steck et al. analysed all published studies to draw out the sociodemographic characteristics of cases of assisted dying. They found some patterns (e.g., in most jurisdictions the majority of cases were male, and there was a correlation with higher education and secular beliefs) but no correlation with vulnerability in general or with disability specifically.
Emanuel et al. summarized the data from all jurisdictions with assisted dying at that point: Belgium, Canada, Colombia, Luxembourg, the Netherlands, and five U.S. states. They concluded that ‘In no jurisdiction was there evidence that vulnerable patients have been receiving euthanasia or physician‐assisted suicide at rates higher than in the general population ... data do not indicate widespread abuses of these practices’, and that the hypothesis that people with disabilities might be disproportionately impacted ‘does not seem to be borne out’.
The second theme that Colburn draws out ties directly to the feeling that Gayle Taira experienced above, the feeling of vulnerability that comes with the thought that those responsible for your care don’t actually value your life, that they may force you into making a decision that you don’t want to make. In reality, says Colburn, disabled people are far more at risk of having their end-of-life desires denied by health professionals, friends, and family, than they are at risk of being forced to commit suicide by their health care team. He says
This point—that opponents of assisted dying thereby show disrespect for the individual lives and autonomy of people with disabilities—crops up repeatedly. It is voiced by people with disabilities themselves. Participants in one study ‘often expressed concern that disabled people may be especially vulnerable to being denied end‐of‐life choices because of the way they are devalued in society’, and that ‘people with disabilities may be denied choice because they are assumed incompetent to make their own decision’.
Interviewees in another expressed the view that this stance was ‘discriminatory against people with disabilities’. This concern is also articulated in the academic literature, with scholars arguing that opposing assisted dying laws on these grounds treats people with disabilities ‘as some anonymous “disabled person” lacking a character’ and ‘as incompetent, easily coerced, and inclined to end their lives places them in the roles to which they have been confined by disability discrimination’.
Many people with disabilities ‘find this stereotyping to be itself demeaning and patronising, complaining that it feeds rather than starves social prejudices’. Even some opponents of assisted dying acknowledge the danger of a ‘paternalistic over‐emphasis on the vulnerability of persons with disabilities’.
Medical Assistance in Dying for Canadians: Choices for Canadians - Report of the Special Joint Committee on Medical Assistance in Dying - Member of Parliament Marc Garneau and Senator Yonah Martin, Chairs - Parliament of Canada
Released at the end of February, this report is the mandated “statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.” Undertaken by a Special Joint Committee of the Parliament of Canada - which means that it has members from both the House of Commons and the Senate, and that the committee is dissolved upon the issuance of this its final report - this is the latest in a series of reports required compiled by Canada’s Parliament in an effort to ensure that MAiD is being delivered in accordance with the application expectations set out the regulations, as well as to ensure that the law continues to fulfill its obligations pursuant to the relevant Supreme Court of Canada (Carter) and Superior Court of Québec (Truncheon) rulings.
In the section “Who is accessing MAID”, we read,
Dr. James Downar, Critical Care and Palliative Care Physician, told the committee that, for the most part, those who request MAID “almost invariably have excellent access and are receiving palliative care far more than the average population.” Dr. James Downar and lawyer Bryan Salte from the College of Physicians and Surgeons of Saskatchewan pointed to evidence suggesting that those who are accessing MAID in Canada are not marginalized individuals. Professor Constance MacIntosh believed that physicians would be able to recognize cases involving social disadvantage or a lack of supports, and may not approve MAID in such cases. According to Jocelyn Downie, University Research Professor, Faculties of Law and Medicine, Dalhousie University, and Dr. Derryck Smith, Clinical Professor Emeritus, Department of Psychiatry, University of British Columbia, empirical research from several jurisdictions fails to demonstrate that MAID presents a risk to vulnerable populations, including persons with disabilities. These witnesses suggested that, if anything, vulnerable populations face barriers to accessing MAID.
In a section on the social determinants of health, a witness is asked if he has ever heard of any situation come up where someone was told that they could not be provided with appropriate supports and was offered MAiD instead:
Dr. Félix Pageau, Physician, Geriatrician and Ethicist, Université Laval, told the committee that “a contentious case came up in the research I conducted for my master’s degree.” When asked whether there were any statistics available to show the frequency of this happening, Dr. Pageau replied that “[a]ccording to Quebec data, one of the primary reasons why people request medical assistance in dying is that they feel they aren't getting appropriate services or treatment.” The committee notes that this reference to Quebec data conflicts with the 2021–2022 Annual Report of Quebec’s Commission on end-of-life care, which explains that 66% of individuals who received MAID had a cancer diagnosis. In addition, 65% of individuals who received MAID had a survival prognosis of three months or less and 84% of individuals who received MAID had a survival prognosis of one year or less. (emphasis added)
Dr. James Downar was quick to note that
it's very important to say that we really do need to address social determinants of health, including housing, food security, pharmacare and dental care, because these are important to the health of all Canadians. I think it's important to recognize that these measures are really not about medical assistance in dying at all, because structurally vulnerable individuals are already far less likely to use medical assistance in dying than anybody else. We should do these things simply because they're a good idea and the right thing to do. (emphasis added)
The report also included a lengthy submission from the family of someone who’s story was manipulated in the media in order to make a particular point. After sharing words from a note that Dr. Chantal Perrot received after this woman’s death, Perrot suggests that this woman would be appalled to see her experience crassly used for political gain:
She has also been mischaracterized as living in poverty. She would be appalled. Yes, she received social assistance, but, apart from not being able to build that safe bubble, she was clear that she had: adequate resources to live; no debt; savings; and financial concerns were not contributing to her choice to have MAiD. Unfortunately, those opposed to MAiD and special interest groups wanting to misuse her life and history have created a false impression of who she was and how she chose to live and die.
I’m just now arriving at the section on MAiD where the sole underlying condition is a severe mental illness. Also to come is a section on the process for mature minors, which includes a contribution from a graduate of the University of Waterloo’s Applied Philosophy Ph.D. program, Kathryn Morrison. At this point in the report, however, it’s clear that this piece is required reading for anyone interested in MAiD in Canada.
The Death of Others. On the Narrative Rhetoric of Neoliberal Thanatopolitics (2022) - Jan Grue - Disability Studies Quarterly (Open Access)
Jan Grue has been writing on the intersection of disability, ‘biopolitics,’ and ‘thanatopolitics’ for a number of years. Much of the concept of his work is based in Foucaultian philosophical analysis, which is not something I have much experience in, given that my training is largely in the tradition of analytic philosophy. That said, I’ve noticed that something like this particular vein of opposition to MAiD seems relatively common outside the general confines of the analytic tradition, and so I thought it important to highlight. Like the Colburn piece, you can read the full text of the article online for yourself without institutional access.
Key to the thesis of this paper is that neo-liberal thanatopolitics, which Grue understands to be the antithesis of Foucaultian Biopolitics,1 is actually a conceptual tool that the state uses to keep up appearances when the marginalized are killed in the name of a "Good Death."
Giorgio Agamben (1998) is perhaps the best-known exponent of this understanding of thanatopolitics, describing death as the ultimate tool available to the sovereign state in its work to dominate wholly individuals (Murray 2006, 2008; Blencowe 2010). Death is the means of fully reducing bios, human lives invested with rights, to zoë, 'bare life' or life that may be ended without repercussion. Here, death occurs as the inevitable result when human beings are stripped of their rights and treated as enemies (Nasir 2017), and thanatopolitics is entirely a matter of using force against the vulnerable.
The way that thanatopolitics works, Grue claims, is by using a rhetorical trick called parrhesia, which is understood to be particularly candid speech. When a neo-liberal state allows a person seeking MAiD to ‘speak their truth,’ to make a public claim to the fact that their choice is free and has not been coerced or forced on them in any way, what they are actually doing is using the voice of a vulnerable person to cover up the fact that they are engaged in state-sanctioned killing of disabled people.
The function of parrhesiastic rhetoric in thanatos political discourse is thus to confer a particular truth-value on the utterances of speakers who seek death. Since they speak from a position of absolute vulnerability, how can we disbelieve them? This rhetoric creates identification through the evocation of the universal vulnerability that is a fact of all biological life. Simultaneously it obscures biopolitical vulnerability, which is always enmeshed in structures and relationships (Rose 2014; Fassin 2018). In developed, late-modern societies, this vulnerability intersects crucially with the demographics of inequality, with the distribution of healthcare. Singular, existential vulnerability obscures from view all of those particular causes that belong to the social, the political, and the economic sphere. (emphasis added)
Grue continues,
When these conflated understandings of vulnerability are used to legitimize the choice to die, the maneuver borders on the perverse. Even as neoliberal governance promotes an ideal of "informed" and "autonomous" citizenship for patients and service users, often reframed as customers, this ideal is ever more at odds with the sociopolitical facts on the ground. (emphasis added)
The point, for Grue, is that by cloaking state-sanctioned death for disabled people in the rhetoric of autonomy, and having that message delivered through the narrative of the vulnerable disabled person, the state is able to evade responsibility for what is really happening underneath: the state-sanctioned execution of disabled people.
Medical Aid in Dying: The Case of Disability (2023) - Christopher Riddle - New Directions in the Ethics of Assisted Suicide and Euthanasia
The last piece I’ll highlight is a chapter in a new work on end-of-life care authored by Canadian philosopher Christopher Riddle. This piece was sent to me by a kind person on Twitter, and I have subsequently been able to connect directly with Riddle. In this chapter, Riddle tackles some of the most common arguments made by disability rights organizations who are against MAiD, and, after careful consideration, concludes that they do not have the explanatory power that it is assumed they do. He argues that most of the opposition to MAiD can be found in one of two categories: ‘person-centered vulnerability and harm’ and ‘personhood-centered vulnerability and harm.’ In the first case, Riddle considers whether individual disabled people are vulnerable to harm in jurisdictions where MAiD is legal, and in the second case he considers whether people with disabilities - as a collective - are vulnerable to harm in jurisdictions where MAiD is legal. The entire paper is worth reading, but here I will briefly highlight what I call the ‘Can’t Have It Both Ways’ problem. In short, while disability rights organizations are vociferous in their opposition to MAiD on account of the potential for abuse by health care providers, they rarely, if ever, oppose refusal or removal of care directives:
… our current practices that permit people to make choices about care at the end of their life are not subject to the same scrutiny that medical aid in dying is, and many more people are forced to make choices pertaining to the refusal or removal of care, than those who will be eligible, or who will seek, aid in dying. If disability rights organizations were genuinely concerned about abuse of healthcare systems and person affecting harm against people with disabilities, they should be equally as concerned about granting any autonomous decision-making ability at the end of life, due to both its equal potential for abuse, and its more frequent use. They are silent on this matter however. To fail to apply their moral logic in this case constitutes a moral inconsistency that is both unjustifiable as a matter of principle, as well as inexplicable.
If you know of anything that I should be reading on the subject of disability and medical aid in dying, please let me know in the comments!
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I don’t know much about the concept of Biopolitics, but from what I understand, Michael Foucalut had a lot to say about the way the state uses and abuses an individual’s physical body to obtain a particular kind of compliance. For more on this idea, visit the Stanford Encyclopaedia of Philosophy’s entry on Michael Foucault.