Thank you so much for allowing me to talk about a subject I have thought so much about, talked so much about and am so interested in.
My experience is in assessing almost 800 Canadians for medical assistance in dying, and providing for over half of those. I was a family doctor for over 30 years, so I saw lots of dementia patients at that point. I'm a researcher and have done a lot of research on MAID, including on advance requests.
I'm going to focus the first part of my talk on the paper I sent you. I just want to make a few highlights about this.
First of all, the majority of Canadians want advance requests. A number of other researchers have found this. In our study, we asked about specific situations, as in, “Would you want to be able to have an advance request in particular situations?” Eighty-six per cent of our participants wanted it, so we're going to have advance requests. If we don't get it in 2023, we'll get it the next year, or we'll get it with the next Parliament, but we'll get it because we live in a democracy, and 86% of Canadians want it.
The specific things we talked about in our study are a loss of personal dignity, including being unable to toilet; a loss of freedom, like being kept in a locked facility; a loss of the ability to recognize family members; a loss of the ability to keep memories even for a few minutes; and a loss of the ability to control behaviour, as in becoming aggressive and inappropriate.
Now, the second really important finding of our paper was to see a gap between what people wanted and what MAID providers were willing to provide. This gap, depending on all these different specific situations, varied between 19% and 44%. Just because you make an amendment to our law, it doesn't mean you'll be able to have an advance request that is acted upon. We worked hard as a research team to look at what would make it work. We, of course, asked the MAID providers in our study and discussed it.
What would help most would be a list of very specific circumstances that are concrete in nature; readily visible to practitioners, to family members and to caregivers; stable—in dementia, it's very common for people to have, for example, sundowning, where they are fine in the morning and not fine in the afternoon—and requiring minimal interpretive judgment by the provider.
We have no experience in advance directives, but we have experience in waivers of final consent. We are finding that, first of all, patients love them. They are so grateful when they find out they don't have to worry about losing capacity before the date they've chosen for MAID. They are so relieved, and I know this is going to happen when we get our advance requests.
The other thing is that the providers actually didn't have any problem providing for the people who did lose.... In my case, I have signed many waivers of final consent. I've only used them twice, and in both cases it was just so clear. This is different, however, because I knew these people. I had assessed them. I had seen or talked to them recently. That's not the same as meeting somebody you've never seen before in a state of advanced dementia when you have to interpret everything.
What we are used to doing—and this comes to what you've just heard from the others—is taking each case separately and looking at the entire picture. I would want to see somebody who not only wrote their advance directives but had told others in the process of advancing disease that they wanted it.
On the question about suffering, yes, it's a big problem. If I were to see some lovely demented old lady playing with her dolls and looking perfectly happy, would I be able to end her life? I don't think so, no matter what she had said in the past.
So you're stuck. All you can do as a parliamentary committee is recommend an amendment to the law, and the law has to have the word “specific” in it, so that it is clear that an advance request is not a general one. It must be very specific. Each case still has to be assessed separately, which is exactly what we do for every MAID case when we look at the entire life of a patient and not just a few specific criteria.