Advance requests: A deep dive into the issues of the Parliamentary Review

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 was the Parliamentary Review committed to in the Bill. The review included eligibility for MAID of mature minors, eligibility of those with a mental disorder as the sole underlying condition, advance requests for MAID, the state of palliative care, and the protection of people living with disabilities.

As part of our mission to educate and share knowledge, we examined each issue of the Parliamentary Review in a series of blog posts. We hope to give people across Canada 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 this blog post, we will discuss advance requests for MAID.

Take action – write your MP to prioritize advance requests.

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.)

In practice, an advance request would allow someone to make a formal request for an assisted death before experiencing intolerable suffering from a known grievous and irremediable condition, disease, or disorder.

At the forefront of advocacy for this issue are people across Canada 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 adults across the country 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, and instructing their loved ones, Substitute Decision-Maker, and clinician to abide by their request at a time when they may have lost the capacity to communicate this suffering or consent to receive MAID.

Individuals have made it clear they want advance requests. We know through a 2022 Ipsos poll that 85% of people across Canada support advance requests for those with a grievous and irremediable condition and 77% support advance requests even if no grievous or irremediable condition exists.

People should be 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.

Insight from an expert

Dr. Ellen Wiebe

We spoke with Dr. Ellen Wiebe, co-author of 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 explained, “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 specify a threshold of triggering conditions which, once met, would allow for the provision of MAID at a later time; in other words 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 a 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 went 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.”

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

Do you want to help protect the constitutional right to medical assistance in dying? Take action – write your MP to prioritize advance requests.