Thank you very much.
I practise internal medicine and geriatrics, and most of my work is with older adults or people dealing with geriatric syndromes such as frailty and dementia. I often care for patients who are making important and potentially life-limiting decisions and regularly assess patients' capacity for decision-making in these contexts.
Thinking about our discussion today, it's useful to reflect on why people might seek MAID and why they would wish to use an advance request. People seek MAID because they have symptoms that, to them, cause or are anticipated to cause intolerable suffering as these symptoms progress. For most conditions, this does not inherently lead to loss of decision-making capacity except in defined situations, such as progression of brain tumours and delirium at end of life.
In the case of dementia, the loss of decision-making capacity is often inherent to the very symptoms a person might consider to be intolerable suffering. We could thus see a lack of provision for advance requests as something that impacts this vulnerable population in a somewhat discriminatory way because of the very symptoms of their condition. We should also recall that people living with dementia can currently be eligible for MAID, but it's just at a time that would be much earlier than they might otherwise choose if they had the comfort of knowing that an advance request could be valid.
What analogies are useful to how we can currently approach health care decision-making?
Of course, we currently do allow, and in fact encourage, people to make advanced directives to deal with life-and-death situations, including with reference to tricky conditions. We ask them and/or their substitute decision-makers to consider whether they would want resuscitation. We allow people to decline or withdraw treatments at any time in their illness journey from pre-diagnosis to late stage. These are sometimes called “hastening decisions” because they may hasten death, but in all these cases, clinicians enter into discussions with the patient and/or decision-makers to ensure that they're making an informed choice and that they meet the generally accepted threshold for capacity in these decisions. Assuming these criteria are met, the person's wishes regarding these decisions are respected.
Regarding the question of whether there is an ethical and legal difference between withholding and withdrawing care, which was mentioned earlier, this is, of course, debated by many ethicists and others. Carter v. Canada concluded that MAID was not different from other end-of-life decisions, so it behooves us to think about that in relation to this question about advance requests for MAID.
What are some concerns and counter-arguments about advance requests?
One counter-argument is that it would be too difficult to operationalize the exact definition of what the person has deemed to be “intolerable suffering”. There, of course, may be some grey areas. Indeed, our clinical work is often all about the grey areas. As an example, I've cared for patients whose degree of suffering was extremely clear to all involved; these people lived with complete torment that was not possible to relieve, despite intensive management attempts. It has been heartbreaking to hear from some families that the person's wishes were very clear: They would not want to live in such a state and had wanted to request MAID in advance, but were not able to.
Counter-arguments also bring up grey areas in interpretation. Is this the state the person meant? How do we word the advance request in way that allows for optimal clarity? For example, how would we operationalize a statement like, “Once I no longer remember my family, I want MAID”? What if their cognition fluctuates? Did they mean every family member, or just their closest ones? Is it about forgetting names or is it a complete lack of recognition? There are safeguards to address some of these concerns that have been proposed, such as templates and detailed wording, including consultations with appropriate stakeholders and possibly adjudication panels.
Clinicians may also worry about performing MAID if the prestated condition appears to be met, yet the person seems content in their current life. Again, even in those cases, safeguards could be implemented, as has been discussed earlier. People whom I've heard from who are living with dementia more often worry about distress and agitation rather than about simply memory loss when it gets right down to what really defines their suffering.
Another concern is of course the “current self versus future self” argument, which we heard earlier as well. Many cite evidence that people adapt well after conditions like spinal injuries once they have the lived experience. However, on the flip side, we risk not valuing the current and often long and strongly held values and beliefs that a person now has if we're telling them that their future wishes may change. Here stigma becomes the very relevant consideration. This may contribute to feelings of further marginalization and people living with an already stigmatizing condition.
Some worry that advance requests for MAID may be made with too much consideration of financial costs and one's burden on others. This of course leads to discussions about how we provide social supports and care for people living with progressive conditions that may impair their future decision-making and how we value their quality of life. The recent discussions of how we provide long-term care, which has been stressed beyond the breaking point by COVID, brings this issue to light. Clearly this is something that requires a systems fix, as well as careful ruling out of coercive factors if and when advance requests are considered.
In the bigger picture, it's also hard to extract this issue from the overall systems of dementia care that we have in Canada, which are suboptimal. We provide expensive care, but not necessarily good care, and we have underfunded dementia research. We treat people living with dementia in ways that do not further their overall well-being, such as lengthy stays in emergency rooms and in hospitals for behavioural expressions of dementia, which is pretty much exactly the wrong environment to help these people.
