Jonas-Sébastien Beaudry
jonas-sebastien [dot] beaudry [at] mcgill [dot] ca
Thank you for the invitation. I just want to express two reservations regarding the legalization of advance requests for MAID. My first point is a reminder of the basic legal and moral principle that when people become unable to make decisions, such as financial or healthcare decisions, our law sets up protective regimes to ensure that they do not harm themselves. An important feature of such regimes is that decisions must be taken in the best interests of the person. They must be taken to foster that person’s well-being. We have to provide that person with the care that is most respectful of their residual agency, and most beneficial to their well-being.
At first sight, it would appear that respecting the instructions that someone gave, in the past, to treat them, in the future, looks respectful of their autonomy. However, identity, desires, and needs change over time. So, while it may well be the case that respecting past instructions is a way to respect autonomy in many contexts, it is not obvious that it is always the case, especially when people undergo important cognitive changes. When that happens, the person may have experiences and desires that are different from those that they had in the past — for instance, if they never experienced what it is to live a life with less cognitive capacities.
To illustrate, let’s imagine a 75-year-old patient with dementia, called John, who is not able to make health care decisions. My first point is only that decisions made on his behalf should be made for his benefit. Now, one may assume that of course, John without dementia, when he was 50 years old, would care about his own future self, and know his future self better than anyone, and that would put him in a great position to say what’s best for John at 75 years old, but we could suggest that it is not so obvious. For one thing, John may not make a decision in the best interest of his older self. He may have the best interests of someone else in mind. For instance, he might not want to be a burden on an aging spouse, or other members of his family. Or he might have his own interests, right now, in mind, rather than the interests of his older, sick self.
For example, he might imagine his future self, bed-ridden and highly dependent, and feel shame at the thought that this is how he would end his life, and this is how the people he cares about would last see him. Now, perhaps this evaluation seems reasonable to many people. However, such an evaluation may potentially share discriminatory beliefs about the quality of life of people with illnesses and disabilities, and about whether their lives are worth having at all.
Many people live happy lives with various significant medical conditions or a high level of dependency. But if John — or anyone within his family or health care team — doesn’t think so because of ableist generalization, John at 75 years old would become the victim of ableist or ageist stereotypes.
Now, the point I am making is that, even if you personally believe that John ought to die, because you personally would not want to live were you in his situation, we should not end John’s life because you feel that way. We should do what is best for John. We should care for the patient before us. And that is John with advance dementia, at age 75. It does not mean that John’s past preferences are not relevant. The holistic assessment of what is in his best interest may include his past wishes and preferences.
So, my first point is that giving the last word to the former self of a patient — sometimes a cognitively and experientially distant self— is not necessarily and always respectful and beneficent towards the patient, in their current state.
Especially if a long time passed, or if new experiences occurred that the person never experienced before, if new relationships of care and dependency occur that did not exist before, if new forms of suffering and new forms of resiliency or joy are experienced that weren’t experienced before, and if significant cognitive changes occurred in the person, it makes that close connectedness between past and present selves more and more questionable. And so would be a law— giving control over the fate of someone with a cognitive disability to a significantly remote past self.
If it is true that we must make a new holistic assessment of the patient’s needs, not just indiscriminately apply their past wishes, my second point is that: it seems very difficult, if not impossible, to detect a kind of suffering that would justify ending a patient’s life — when patients themselves don’t have enough cognitive capacities to express the wish to die. If the state can stay away from endorsing conceptions of lives not worth living, it should.
And this second point would apply both to non-voluntary euthanasia, and to an advance request law — because for an advance request to be activated, doctors would still need to be able to identify that the patient — John at 75 years old with dementia — has indeed attained the kind of suffering that would justify triggering MAID according to the patient’s past instructions.
Question (Stephen Douglas Ellis MP):
You talked a little bit about protection of people against self-harm, etc. One of the things that came up in our earlier panel was some research around the concept of suffering, and how difficult that is to detect. Could you speak about that a little bit please?”Answer:
Sure. Thank you for the question. I think a key issue is that suffering is highly subjective, it’s not an objective benchmark. Severe pain can be more medically objective. But suffering is not. So, without the patient’s input, it’s simply a myth that we will not make value-laden judgements about which lives are worth living.
Consider Quebec’s Bill 38, which proposes to amend Quebec’s Act respecting end of life care, to include advance directives. It says that the advance request must describe in detail the physical or psychological suffering that cannot be relieved in a way that the patient would find tolerable when they write the request. Then, a monitoring system would be put in place so that, when the patient shows signs of that suffering, the MAID process can be started.
Now, the problem is that— to come back to my example — if John at age 50 is able to consent and explains that he is experiencing an intolerable suffering such that death would be preferable in his mind — that’s it. Doctors, judges, and legislators don’t have to ask the absolutely unsolvable existential question of what is a life worth continuing. They just need to respect the fact that John made his own existential choice that no, it is not worth living.
But the notion of intolerable suffering cannot just be transposed onto someone who cannot make this choice, including John at age 75 and with advance dementia. And that is because, suffering is a complex subjective experience. We can measure pain. We can treat pain. Ultimately, we can eliminate pain completely if nothing else works, through deep sedation.
But we are not talking about a response to pain. MAID has been designed, and is used primarily, as a response to existential suffering, such as the loss of ability to engage in meaningful activities or the loss of ability to perform activities of daily living. Bill 38 in Quebec says that there is a special kind of suffering — that special kind of suffering justifies MAID or euthanasia — and patients can list that specific type of suffering on their advance request.
Now, my second point is this: I am not clear on what that suffering is. Nor is the Quebec Bar, which produced a memorandum last summer stating that suffering is a subjective notion, not an objective standard, and the Quebec Bar’s working group on MAID said they were wondering what Bill 38 meant by this, I quote, “objectifiable” kind of suffering, that is, observable by a doctor, like doctors observe the symptoms of physiological dysfunctions and diseases. Presumably, it means something like objective, or objectively verifiable. But subjectively intolerable suffering that is worse than continuing one’s existence does not seem to be objectively verifiable.
There is nothing objectively verifiable about the intensely personal leap— that someone takes above an abyss of disagreements about the value of life — when they move from — experiencing specific social and physical issues, on the one hand — to the decision to prefer death instead, on the other. That leap, that jump, requires a subjective input by the patient themselves.
[Author’s note: I was out of time, and could not conclude my answer, but the logical conclusion I was building towards is the following:]
If the patient themselves is no longer able to take that leap, we can’t have anyone do it for them. Not doctors, not even their past selves. Not unless we endorse some kind of theory about a suffering such that death is a benefit. But MAID law never endorsed a statement of medically objectifiable conditions as a necessary and sufficient condition to receive MAID. Requesting it autonomously has always been at the heart of how our liberal state has stayed away from such fraught value judgements.
As I have argued elsewhere:
taking people with [cognitive and mental impairments] seriously requires us to respond properly to their suffering, which everyone agrees includes more research into the nature of their suffering and into kinds of palliative care and social measures susceptible of improving their well-being. Not everyone agrees, on the other hand, that death is a “benefit.”