Good evening. I am delighted to be with you today as part of your study on advance requests for medical assistance in dying, although I am personally more concerned with requests that are made following a diagnosis of neurocognitive disorder.
Today I will be providing you with some food for thought in three main areas: first, support in making advance decisions; second, implementing MAiD; and, third, the long-term effects of this societal decision more generally.
I will begin with support in making advance decisions.
In my research work, I have realized how important it is not to be sparing with this type of support. Since advance consent is always imperfect, we really must reflect on how we plan to support patients in their process of consenting to end-of-life care, or final care. If we go ahead and allow advance requests for medical assistance in dying, it will be very important that patients be supported by health professionals. We must develop mechanisms to ensure that their choice is not made without medical expertise, given the complex nature of these conditions and the various possible stages and scenarios.
In Quebec, we have a system of advance medical directives on which I have done a considerable amount of work in recent years. To respect individual autonomy and create a tool that's flexible and easy to use, we have come up with a very simple solution: a form with boxes to tick. We even assumed that patients had gathered information before signing it. If we decide to allow advance requests for medical assistance in dying, we will definitely have to do things differently. There has been very little uptake of our advance medical directives system, and that may be one of the reasons why.
What I'm imagining is a flexible tool that would help people establish priorities and provide a reference point when they become incapable. They should also be able to ask questions, to be supported and to plan, together with other professionals, how all that will fit in with follow‑up care. People must not be left to their own devices. There is broad acceptance in Canada and Quebec of the idea of being able to make such an advance decision on one's own, but, from what I have observed from my reading and work, we also have a duty of support.
There is also the idea of letting people change their minds. I will even go so far as to say that consent should be an ongoing process, by which I mean that people must reaffirm their informed consent to this care as their condition evolves, relying on the experiential knowledge they have acquired.
The second part of my presentation concerns the importance of reflecting on the implementation of this choice, which is often described as an individual choice rooted in individual autonomy and self-determination. I obviously don't question this, but we also cannot disregard the fact that this choice, once the person has become incapable, will be implemented by third parties, mainly health professionals, who are also governed by professional, ethical and legal obligations.
You are obviously aware of the assessment that these professionals are required to conduct under the act. Currently, for example, there is the criterion of suffering, which always resurfaces. For access to care to be granted, it must be established that the person is experiencing persistent and intolerable suffering. How is that suffering assessed? I don't have the answer. Will we allow individuals to determine in advance what suffering is for them? Will we request a contemporaneous assessment of that suffering? What will we do if there are no factors indicating whether the incapable person is suffering or not?
What I'm getting at is that we must provide the caregivers and health professionals who execute the decision with markers and tools. We want to prevent them from being troubled by existential questions and wondering whether they have correctly interpreted the situation. We also want to prevent them from suffering in the process.
There will also be repercussions for family members, who, whether we like it or not, will also play a central role in these decisions. They won't be making the decisions, but they will be involved. What role will be assign them? Do we want to give them a role that's more…