On March 17, 2021, Bill C-7 received Royal Assent, a huge milestone for medical assistance in dying (MAID) and end-of-life rights in Canada. With the new law in place, the next step is the Parliamentary Review committed to in the Bill. The review includes eligibility for MAID of mature minors and those with a mental illness, advance requests for MAID, the state of palliative care and the protection of Canadians living with disabilities.
As part of our mission to educate and share knowledge, we are examining each issue of the Parliamentary Review in a series of blog posts. We hope to give Canadians insight into the reason for, and importance of each issue. We also hope you will be motivated to advocate for one, or all of the issues by engaging your member of parliament in the coming months.
In this blog post, we will discuss advance requests for MAID.
With an election now called for September 20, 2021, the Parliamentary Review has stopped. It will be critical to ensure that the Joint Committee is re-established and the Parliamentary Review begins again, as quickly as possible once Parliament resumes. Please tell the candidates in your riding that reinitiating the Parliamentary Review is important to you.
What is an advance request?
An advance request for medical assistance in dying is, “a request for MAID, created in advance of a loss of decision-making capacity, intended to be acted upon under circumstances outlined in the request after the person has lost decisional capacity.” (Expert Panel Working Group on Advance Requests for MAID 2018, 35.)
An advance request would allow someone to request MAID before a diagnosis of a grievous and irremediable condition. A person would express in a written document the circumstances in which they would want to receive MAID in the future, due to specific health conditions.
At the forefront of advocacy for this issue are Canadians who have lived experience with dementia and Alzheimer’s disease. Senator Pamela Wallin has been a vocal supporter of advance requests; she watched two family members die after suffering from dementia. She explains, “I come to this whole debate from deep personal experience. I would like to have this right to make an advance request for MAID and to not go through what my mother and grandmother were forced to go through."
DWDC’s position on advance requests
DWDC calls on the government to enact legislation allowing competent adult Canadians to create an advance request for MAID with or without a diagnosis of a grievous and irremediable medical condition. This request could include a personal statement describing the circumstances they themselves would consider to be intolerable suffering, but where they find themselves lacking the capacity to communicate this suffering or consent to receive MAID.
Canadians have made it clear they want advance requests. We know through a 2021 Ipsos poll that 83% of Canadians support advance requests for those with a grievous and irremediable condition and 76% support advance requests even if no grievous or irremediable condition exists.
It’s about how to ensure that people are able to put their wishes in place while they are competent and then know that an advance request can move ahead when the time is right even if they are no longer competent at that point.
We believe that with clear safeguards in place, advance requests for MAID can be implemented safely and effectively. How we navigate advance requests will be examined through the Parliamentary Review, with input from experts who will share their recommendations and conclusions.
Insight from an expert
Dr. Ellen Wiebe
We spoke with Dr. Ellen Wiebe; she co-authored a study called Advance requests for MAID in dementia: Policy recommendations emerging from a mixed-methods study of the views of the Canadian public and MAID practitioners. She helped clarify the difference between a waiver of final consent, made possible through changes in Bill C-7, and advance requests.
Dr. Wiebe explains, “Our current law allows waivers of final consent for people who are already assessed and found to be eligible for MAID – that is, they are “suffering unbearably” from a “grievous and irremediable condition”, have a natural death that is reasonably foreseeable and have the capacity to consent. The patient and the provider must agree on a date for MAID and then if the person loses capacity before that date, MAID can be provided on that date or earlier. There are some people who have been diagnosed with dementia who do qualify and can sign these waivers, unfortunately, that still means that most of them must choose to die sooner than they would like to or risk seeing the disease to its natural end.
For advance requests, should they become legal, you would not need to be eligible for MAID at the time that you record your advance request and you would not need to set a specific date. At a later date, when the details of your advance request become applicable and you have lost decisional capacity, your advance request could be initiated and any MAID provider would be able to assist you.”
Key findings from the study
Dr. Wiebe explained, “We asked a sample of the general public under what specific circumstances they would like to receive MAID if they had dementia, for example if they were incontinent or could not recognize family members. Then we asked a sample of MAID providers whether they would be willing to provide MAID in the same specific circumstances with the patients’ informed consent or with just a written advance request. As we expected, there was a reluctance indicated by providers to provide MAID without express consent. This varied with the different circumstances.” She goes on to say, however, “the most important aspect to address the gaps will be to have very specific details about the circumstances in which the patient wants to have MAID. It will be important that the Joint Committee carefully reviews the data and presents clear criteria and parameters for advance requests.”
As Canada’s MAID law develops, we want to ensure that additions such as advance requests are carefully considered with both patients and clinicians in mind. We are grateful to all the people –parliamentarians, experts and those with lived experience – who are doing the work of examining this very important issue.
Advocate for advance requests
Are the issues related to the Parliamentary Review, including advance requests, important to you?
Do you want to help protect the constitutional right to medical assistance in dying?
We have created an Election 2021 Advocacy Toolkit and Action Guide that provides you with the resources you need to effectively engage with the candidates in your riding. Your advocacy will help keep the Parliamentary Review of MAID top of mind.