People with dementia have been caught in a cruel trap under Canada’s medical assistance in dying law (MAiD) – until now. As their suffering advanced, their decision-making capacity receded, but the capacity to make their own health-care decisions was required at the moment of MAiD itself. Access to MAiD balanced on the knife-edge of reaching an intolerable state of suffering prior to completely losing capacity. People were forced to choose to end their lives earlier than they wanted. With the passage of legislation amending Canada’s MAiD law (Bill C-7), this dilemma will be over for many.

This article is about them – people with dementia who still have decision-making capacity, who already meet all of the eligibility criteria for MAiD, and whose natural death has become reasonably foreseeable. These people can now access MAiD either before or after loss of decision-making capacity. Here’s how.

To be eligible for MAiD under Bill C-7, a person must be eligible for government-funded health services, be at least 18 years old, be capable of making decisions with respect to their health, have made a voluntary request for MAiD, and have given informed consent after first being informed of the means available to relieve their suffering.

In addition, a person must have a grievous and irremediable condition, defined as:

1) a “serious and incurable illness, disease or disability;”

2) “an advanced state of irreversible decline in capability;”

3) “that illnesses, disease, or disability, or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable.”

If a person meets these eligibility criteria and their natural death has become reasonably foreseeable, as long as they still have decision-making capacity, then they are eligible for MAiD.

For those with dementia, some may not want to have MAiD right away. But they may worry about the real risk they will lose decision-making capacity and therefore access to MAiD if they wait too long.

Now, because of Canada’s newly amended MAiD legislation, people may use something called a waiver of final consent. That is, a person who has requested assisted dying, been assessed and already found eligible, can make a written arrangement with their medical or nurse practitioner for it to be provided on a specified future date. The procedure can then be provided on or before that date if they lose decision-making capacity.

Clinicians and patients with dementia can now have discussions about waivers of final consent. If the patient wants to have this option, the clinician and patient can agree to follow a process through which the clinician will follow the patient closely. On diagnosis with dementia, a person has a serious and incurable disease, and their natural death has become reasonably foreseeable. Their decline in capability will be irreversible. Over time, the state of decline will become advanced. Over time, the disease may cause enduring, intolerable and unrelievable suffering at the same time as decision-making capacity will decline. All of this should be carefully tracked.

This change to the law will enable some people with dementia to live longer than they would have under the old law (as they won’t have to proceed with MAiD prematurely to avoid losing access to MAiD entirely).

Once the person’s decline has become advanced and if suffering has become enduring, intolerable and unrelievable, they will become eligible for MAiD. While they still have decision-making capacity, the clinician and the patient can then enter into an arrangement that the clinician will provide MAiD on a specified day even if the person has lost capacity to consent. To be clear, if the person still has capacity to consent on that date, their wishes expressed that day, not the written arrangement, will be followed.

This change to the law will enable some people with dementia to live longer than they would have under the old law (as they won’t have to proceed with MAiD prematurely to avoid losing access to MAiD entirely). It should also bring an enormous sense of relief to many to know that for all those who have been found eligible for MAiD and whose death is already reasonably foreseeable, the waiver of final consent is now available should they ever want to use it.

Unfortunately, there will still be many people with dementia who aren’t helped by this change to the law – specifically, those who lose decision-making capacity before their suffering has become intolerable. These people’s hopes to access MAiD hang on the work of a new joint committee of the House and Senate.

Part of this committee’s mandate is a review of Canada’s MAiD legislation as it relates to requests for MAiD made in advance of meeting all eligibility criteria. Take, for example, a person who wishes to make a written request on the day they are diagnosed with Alzheimer’s.

The joint committee will be exploring the evidence and arguments for and against allowing advance requests. It will consider the values of respect for patient autonomy and reduction of suffering (both in anticipation of loss of capacity and after). As well, it will consider concerns about a person having changed their mind but being unable to communicate that change, a person having misjudged what the level of suffering will be in an advanced stage of dementia and what to do if a person appears to be resisting the provision of a previously requested MAiD. This committee is starting work this month, April 2021, and must submit its report to Parliament within one year of its start date.

Debate about this complex public policy issue of advance requests for MAiD is therefore likely to continue at a fever pitch for at least another year. Fortunately, due to some of the recent changes made to Canada’s legislation, some people with dementia have already been released from the cruel trap of the requirement of final consent.

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Jocelyn Downie
Jocelyn Downie est professeure aux FacultĂ©s de droit et de mĂ©decine de l’UniversitĂ© Dalhousie. Elle a Ă©tĂ© membre de l’équipe de services juridiques pro bono dans l’affaire Carter c. Canada, du groupe consultatif provincial-territorial d’experts sur l’aide mĂ©dicale Ă  mourir, et du groupe d’experts de la SociĂ©tĂ© royale du Canada sur la prise de dĂ©cision en fin de vie.
Stefanie Green
Dr. Stefanie Green is a family physician involved in assisted dying. She is the co-founder and president of the Canadian Association of MAID Assessors and Providers and is clinical faculty at the University of British Columbia and the University of Victoria.

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