Thank you very much for inviting me to speak before this committee.
I am a professor of neuroethics at the University of British Columbia. Today I'm going to outline for you a problem and then share some solutions.
If advance requests for MAID become legal, one might think that all that is required is to properly fill out a form and that, when the time comes, a MAID provider will take care of the rest. Unfortunately, that might not be what happens. Evidence from the Netherlands, where advance requests have been legal since 2002, reveals that physicians do not always comply with dementia patients' wishes. Indeed, very few advance requests have resulted in dementia patients' receiving MAID.
In order to anticipate what might happen in Canada if advance requests for MAID in dementia were legal, my colleagues Adrian Byram, Ellen Wiebe, Sabrina Tremblay-Huet and I asked 103 MAID providers working in all provinces whether they would provide MAID under the aegis of an advance request that listed the sorts of specific circumstances that have been discussed often in these proceedings. The vast majority agreed that they would provide MAID if the patient was able to provide full consent. However, as we changed the description of the situation to include circumstances that would likely apply as dementia takes hold—nodding yes instead of providing consent, unresponsive patients but agreement by the family, or reliance upon the written advance request without anyone else to agree that “it's time”—as we moved along that spectrum, the percentage of providers who would offer MAID to dementia patients decreased to the point where substantially less than half would agree.
These data suggest that advance requests for MAID in the case of dementia do not represent a slippery slope. Rather, their implementation represents an uphill battle. This is a pragmatic problem that threatens to undo all the hard work that many of you have put into establishing a route for advance requests in the case of dementia.
Then this question arises: How can we design those requests so that MAID providers will follow the wishes of individuals?
Fortunately, we asked these very same MAID providers to propose concrete policy suggestions that might alleviate the situation. Their recommendations were exceedingly thoughtful, and I want to take this opportunity to publicly thank them for their insights, which are distilled in our 2021 paper, which has been made available to the committee.
I'd like to end my testimony by highlighting five points that stand out as what I would consider minimal solutions to our common dilemma.
First, the advance request should include a list of specific circumstances for the provision of MAID, with extra emphasis on the term “specific”.
Periodic reaffirmation of the advance request would be the second suggestion, because continuity of one's wishes seems to hold particular sway with MAID providers.
Third is enumeration of why each specific circumstance constitutes intolerable suffering for the requester. MAID providers were generally receptive to the idea that individuals could determine for themselves what constituted suffering, but regularly commented that explicit discussion of the issue in the advance request would reinforce the idea that they were doing the right thing at the right time.
Fourth is discussion of the advance request with family and relevant designated decision-makers. Surprises at the time of provision puts MAID providers in an extremely awkward situation.
Fifth is a question asking requesters to be explicit about what they would want to happen if, at the time of provision, things don't go as expected—for example, if family members or the patients themselves object to the procedure.
As you prepare your report, I urge you to consider implementing these recommendations. Our data suggest that, in order to have advance requests do what they are intended to do, we need to carefully consider the reality that confronts the MAID providers. They already have the morally weighty job of providing MAID, and if this legislation becomes law, they will be asked to take on the additional challenge of providing MAID based on an advance request. The success of the entire program depends upon our designing the advance request so that everyone—patients, families and MAID providers alike—obtains the results we all want.
Thank you for your attention.