Peter, What Are You Reading? - Medical Aid in Dying Edition № 2
I decided to dig in to some of the literature on the disability community's historical opposition to MAiD. Here I share with you some of what I've read/am reading:
In my first Medical Aid in Dying (MAiD) edition I covered 5 pieces I was currently reading, and one that I read in 2017 that has deeply influenced my thoughts on the subject. Of course, there’s still more to read. As I continue to read both academic and popular literature on the topic, I am forced to once again reckon with just how nuanced and complicated these issues are. At the very same time, to so many people, they are as black and white as life and death. Here is another selection of readings that both helps to clarify the arguments at the root of the Disability Rights (DR) argument against MAiD, while also highlighting some of the philosophical and empirical challenges to DR opposition to MAiD.
Background: 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.
Sections:
Disability and Life-Ending Decisions / Taking MAiD Way Too Far / Clinical Discussion of Medical Aid-in-Dying / The Last Doctor / The Disability Case Against Assisted Dying
Disability and Life-Ending Decisions (1998) - Jerome E. Bickenbach in Physician Assisted Suicide: Expanding the Debate, Margaret Battin et al.
This paper was showing up in pretty much every bibliography I looked at, and I’d seen it cited directly a few times, so I knew that I needed to read it. Bickenbach is, it would seem, a legend in the intersection of disability studies and philosophy, and this 1998 paper has provided much of the theoretical argument that DR opponents to MAiD still use today, so I’m going to spend a little more time on it than on some of the others. In one notable section, Bickenbach claims that Sue Rodriguez, who we remember provided defining arguments in the Canadian march towards legalization, was an exception to the rule, and not at all indicative of the disabled community. In trying to make the argument that the choices of disabled people are never free from the social devaluation that comes with being perceived as disabled in society, he claims,
… it is surely true that even in a cultural medium in which ill health and disability are assumed always to lower quality of life, and in which this is reflected in social attitudes, policies, and laws, one can still imagine a person with a disability making the autonomous decision to commit suicide. And Sue Rodriguez had the qualities of such an individual. She had been able to secure her sense of self and develop her self-esteem long before becoming ill. Her disease was rapidly and tragically debilitating, though it had no effect on her mental capacity. Most of all, she had support from relatives and friends who, throughout her ordeal, saw her not as a "disabled person," but as Sue Rodriguez taking control over her life.
That being said, even if Sue Rodriguez herself was neither vulnerable nor the victim of social attitudes about the low value of her life, her case is arguably exceptional. The weight of the evidence warrants caution about generalizing from her case. In any event, the law must be written for everyone, not just the exceptional person. It is a commonplace in political theory that an institutional constraint on autonomy may well be justified if, in general and in the long run, it protects people who are vulnerable, though on occasion it produces undesirable, even right-infringing, results for the exceptional few. Ignoring this point is the principal flaw in COPOH's [Council for Canadians with Disabilities] position. Once that obstacle is removed, the submissions of COPOH and Not Dead Yet converge to produce a single, equality based argument against physician-assisted suicide, an argument which takes seriously the concerns of persons with disabilities. [emphasis added]
Now I see this as a straw-man argument, for a variety of reasons that I’m not going to go into here. What’s important is that by setting up the Rodriguez case as the exception and not the norm, Bickenbach can made his primary argument, an argument that I see as foundational to current DR opposition to MAiD. Central to his claim is a particular definition of coercion. He says,
When an individual chooses death as the only way of escaping from an intolerable situation, it is perverse and unfair to say that this is an expression of self-determination or autonomy. Such a choice is voluntary in the sense that the person made the choice, consciously and knowingly. We would be concerned if the individual made the choice unconsciously, or unknowingly. But we should also be concerned if the choice was made only because there were no other viable options. The second sense of "coercion," therefore, applies to choices that are forced by the artificial absence of viable alternatives and options, choices constrained as a result of social attitudes and practices. …
What is salient to the moral conception of coercion is that the range of options has been unfairly, arbitrarily, or unjustifiably limited, not by hard facts and physical laws, but by human beliefs, decisions, actions, and policies. In this sense of coercion, the constraint of choice created by social attitudes and practices concerning disability is appropriately characterized as an infringement on equality of respect and concern. … [emphasis added]
In this sense of "coercion," we can say with far more confidence that the unexceptional people with disability are vulnerable to forced decisions about wishing their own death or seeking assistance to die. Sue Rodriguez may still be an exception. She may have been immune from moral coercion, and her opportunities constrained only by the functional limitations of her disabilities, the prognosis of the disease, and limitations of human knowledge and skill. If so, then her autonomy is infringed by the prohibition against assisted suicide. But if hers is the rare case, the exception, then violating her autonomy may well be the price that must be paid to secure the legitimate state interest of protecting those persons with disabilities who are coerced by unfair limitations imposed on their options.
In short, coercion for Bickenbach is not an active, engaged process of trying to convince someone to do something they don’t want to do. Instead coercion is found in the absence of viable alternatives which, he claims, have been constrained by social practices around disability. This kind of coercion is felt not by its presence at the individual level but by an absence of social investment at the community level, which puts disabled people at a disadvantage when it comes to determining what it is that they want and need out of life. These systemic disadvantages mean that when a disabled person requests MAiD, what they are actually looking for is a way out of the systemic oppression. Thus Bickenbach conceives of an “equality of autonomy” across the community of people with disabilities, and claims that disabled people as a community object to medical aid in dying. With that objection firmly in hand, Bickenbach claims that medical aid in dying should be prohibited by the state in all cases and situations, so as not to enact a program of coercively killing disabled people.
Taking MAiD way too far (2021) - Gabrielle Peters - Macleans
This piece is from the popular press, the Canadian news magazine Macleans, written by Canadian disability activist Gabrielle Peters. It is an op-ed aimed squarely at the expansion of MAiD in Canada beyond those with terminal illnesses, something that DR activists fear will loosen the rocks on the slippery slope towards targeting disabled people. Peters starts with an anecdote, one I will come back to in my next highlighted piece, about Dr. Corinna Iampen who was asked, upon recovering from a disabling but non life-threatening injury, if she wanted to speak with someone about Medical Assistance in Dying.1 Some time later, this same person spoke with her physician about putting a DNR on her file:
While discussing this with her physician, who she describes as very pleasant, she was asked if this meant she would also like to apply for MAiD. Iampen said the question shocked her since in her mind the two are very different things; a DNR means limiting the intervention her medical team uses if and when she is in danger of dying (which she was not nor was it part of her prognosis), whereas MAiD would have doctors taking action to cause her death.
Peters continues,
Trudo Lemmens, a professor and Scholl Chair in Health Law and Policy at the University of Toronto sees what happened as a reflection of the way MAiD has, in a very short time period, moved from the confines of an option for those who are dying, to a medical ‘treatment’ for disability. “The fact that physicians are even thinking about offering MAID in response to spinal cord injury is a troubling reflection of how MAID has been transformed in Canada from an exceptional procedure to ease the dying process into a therapy for serious injury and disability.”
Lemmens said raising the possibility of MAiD to those who are not facing a “reasonably foreseeable death” is offering something illegal under current legislation. But it could become standard practice if Bill C-7 is passed. “Recommending MAiD in that situation would clearly violate the standard of care, would under the current law be recommending homicide, and would violate the important role physicians have in offering hope through supportive therapy; not death.”
This reflects a common fear found in DR literature, some if which we saw in the last edition - the slippery slope isn’t just a thought experiment for philosophy class, but is a real thing that exists. MAiD was supposed to be for intractable, agonizing illness at the very end of life, not offered to someone throughout the course of a recovery process for a non life-threatening disability. And yet, as a result of the Trucheon ruling in the Superior Court of Quebec, Canada has expanded access to Medical Aid in Dying beyond those with a foreseeable end-of-life date, usually understood to be about 6 months.
Clinical discussion of Medical Aid-in-Dying: minimizing harms and ensuring informed choice (2020) - Elizabeth R. Brassfield & Mara Buchbinder - Patient Education and Counseling
The above discussion about a patient who was asked not once but twice if she wanted to talk about Medical Aid in Dying brings up the thorny question of whether health providers should even suggest a conversation about MAiD throughout the course of care. In much of the popular media coverage in Canada, it is often mentioned, with near DR universal condemnation, that a health care provider suggested MAiD as a possible option. Yet there is a real clinical and ethical dilemma at hand, namely the right of patients to be fully informed about the options with respect to their health care. In this piece, the authors look at two jurisdictions, Victoria in Australia and Canada, both of whom take different approaches. Indeed, in light of the view held by the Canadian Association of MAID Assessors and Providers (CAMAP), which holds that health care providers have an ethical and clinical obligation to raise MAiD with potentially eligible patients in the interest of full disclosure of treatment options, it is not surprising that Dr. Iampen would have been asked about her wishes. Victoria, in Australia, however, sees things differently:
Section 8 of the Voluntary Assisted Dying Act 2017 in the State of Victoria, Australia specifically states that a registered health practitioner must not “(a) initiate discussion with [a patient] that is in substance about voluntary assisted dying; or (b) in substance, suggest voluntary assisted dying to that [patient]” [7]. It subsequently acknowledges that this stipulation does not preclude a registered health practitioner from providing information about voluntary assisted dying upon a patient’s request. …
This approach can be understood as primarily concerned with ensuring that a patient’s decision to pursue MAID is voluntary and thus that her consent to this option is valid under the principle of informed consent. To our knowledge, no other medical interventions are subject to legislation requiring that their discussion be patient- rather than clinician-initiated.
Brassfield and Buchbinder argue that the two different approaches reflect opposing approaches to the function of language in the world. Explaining the Victorian position, they write,
For them, the possibility that clinical disclosures about MAID may cause collateral damage suggests that clinical language is not merely a neutral vehicle for transmitting clinical information. Instead, their view of clinical disclosures attends to the power dynamics of the clinical encounter, acknowledging that health care providers can sway their patients through their words, even unintentionally. This idea corresponds with the performative function of language, the notion that language can produce social effects in addition to representing concepts and ideas.
That is, words convey more than their bare-faced meanings, and power imbalances are often reflected in various ways throughout conversations about Medical Aid in Dying. In effect, words not only communicate information, they communicate power. The CAMAP sees things differently. Their policy states:
There is no provision in the law that prohibits healthcare professionals from initiating a discussion about MAID or responding to questions about MAID from a patient. All healthcare professionals have a professional obligation to respond to questions about MAID from patients. Only physicians and nurse practitioners (jointly referred to hereafter as clinicians) involved in care planning and consent processes have a professional obligation to initiate a discussion about MAID if a patient might be eligible for MAID. The discussion should include all treatment options, including palliative care and the option of MAID. The appropriate timing of initiating a discussion about MAID is determined by the clinical context. Healthcare professionals must not discuss MAID with a patient with the aim of inducing, persuading, or convincing the patient to request MAID. [emphasis added]
Brassfield and Buchbinder point out that while the Victorian policy holds language as performative, the CAMAP position holds that language is referential.
Central to the CAMAP position is the fact that clinical communication is an essential medium for conveying information to patients. Linguists refer to this as the referential function of language, which suggests that the purpose of language is to represent things in the world.
The two distinct approach reflect equally valid but opposing therapeutic goals: in the Victorian case, people with disabilities are considered to be in a marginalized position compared to their health care providers, and as such, in order to compensate for the preexisting power imbalance, it is only they who can direct end-of-life conversations. On the Canadian approach, people with disabilities are considered fully competent agents capable of making decisions for themselves, and thus they need to be informed of all the available options. Notably the CAMAP policy includes an explicit prohibition against “inducing, persuading, or convincing the patient to request MAID.”
The Last Doctor - Dr. Jean Marmoreo & Johanna Schneller
One family doctor in the Toronto area, approaching the end of her career, decides to take a 'crash course' in end of life care, having experienced the ways in which specialists and others, towards the end of life, unexpectedly ruptures the otherwise continuous relationship that someone might have with a family doctor - a sort of “from natural birth to the point at which you're carted away to a hospital room for your last breath.” Of particular interest to her was the country's new Medical Aid in Dying program. This book describes her experience learning all about Medical Aid in Dying, including her experiences helping to bring dignity to the end of a number of patients lives.
The late-life medical care system had failed this woman, as so often happens. Why should good end-of-life care be a matter of pure luck? Why did some people get proper, tender send-offs, and others were left alone in misery? MAiD proponents and palliative care proponents are often set in opposition to one another, as if they are two competing sides, either/or. But my year of self-education was showing me they are both part of the same stream. Palliative care and assisted dying had to work together, to offer patients the best of care with the broadest of options.
Was the woman I was assessing requesting MAiD only because other care was unavailable? If so, could I approve her request in good conscience? This should have been resolved weeks, if not months, before she’d reached this desperate point. MAiD is a new option, I reminded myself, but it isn’t meant to be the last best one because there isn’t any other. Things will get better. Surely, we have to get better in helping the misplaced and left-behind people in this world.
I imagined that when I started to provide MAiD, I’d be the harpist who accompanied those who were fully ready to die. But I was learning that I also would be the bullhorn who called in help, so that some could keep living.
The Disability Case Against Assisted Dying (2020) - Danny Scoccia - The Oxford Handbook of Philosophy and Disability
Lastly, this piece, included in one of Oxford University Press’s Handbook series, outlines the most common philosophical objections to MAiD from the perspective of disability rights activists. It becomes clear towards the end of the piece that the author doesn’t necessarily buy the arguments that are being presented, but, in my estimation, he is being reasonably charitable in his descriptions and explanations of the various philosophical reasons why DR activists might object to medical aid in dying. Scoccia divides the objections into two camps, which he further divides into two more. With respect to arguments based on paternalism, Scoccia notes that there are ‘soft’ and a ‘hard’ paternalisms at play. As far as non-paternalist arguments go, Scoccia delineates between ‘expressivist’ and ‘non-expressivist’ approaches, both of which appeal to harm caused to others. Here I will highlight Scoccia’s description of the non-expressivist DR objection to assisted dying:
Assisted dying may benefit the able (and perhaps some of those severely disabled people who would choose it), but it does so at the expense of the disabled as a group or class. The able can autonomously choose to end their lives if they become terminally or seriously ill and find their condition unbearable, and having that option may well be in their best interests. But—and this large causal claim is the key contention in this version of the argument—giving them that legal option has the effect of sustaining disability discrimination. Since providing the disabled with PAD is much cheaper than providing them the social support and antidiscrimination protections that they need to have for minimally decent lives, legalized PAD encourages the able to support PAD rather than the elimination of disability discrimination. For that reason, PAD should not be legalized.
Scoccia, rightly, I think, notes that evaluating the truth of this claim requires relying on data about who is availing themselves of MAiD and why. That said, he says that he finds the claim at least somewhat plausible. He says,
The claim does not require that the able majority be motivated by animosity toward the disabled, a desire to see them suffering or stigmatized. Indeed, it presupposes that they have some minimal amount of compassionate concern for them, for why else would they prefer that the disabled have the option of PAD to a status quo in which they have neither that option nor the social support/legal protections that would give them real autonomy? But my sense is that many able people feel that our society already “bends over backward” to “accommodate” the disabled, that more accommodations would come at their expense, and that justice simply doesn’t require that they make that sacrifice. Increased support for the disabled is the responsibility of relatives, churches, and charities.
Scoccia goes on to give careful consideration to the Terry Schaivo case, which made international news some years ago. Whether you think that MAiD should be permissible or not, this paper is an excellent overview of important arguments against access to medical aid in dying.
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 used ‘Medical Aid in Dying’ and ‘Medical Assistance in Dying’ interchangeably. The Canadian medical and government establishment uses ‘Medical Assistance in Dying;’ I prefer ‘Medical Aid in Dying’ simply because it is fewer characters to type.