Medical assistance in dying bill an important step forward for Canadians with dementia

Dementia is a serious and incurable illness, disease, or disability (“major neurocognitive disorder”).  (Pexels photo)

On October 5, 2020, the federal Minister of Justice introduced Bill C-7 to amend Canada’s medical assistance in dying (MAiD) legislation. Parliament will debate this bill over the coming weeks, aiming to bring the legislation into force by December 18. One critical question about this bill for hundreds of thousands of Canadians is its implications for people with dementia (most commonly caused by Alzheimer’s disease). The short answer is that more people with dementia will have access to MAiD, since the legislation allows an advance request for the service before the loss of decision-making capacity.

MAiD for people with dementia who still have decision-making capacity

Nothing in Bill C-7 changes the fact that some people with dementia (who still have decision-making capacity) are legally permitted to receive MAiD. Under the current law, a person can receive MAiD if they have decision-making capacity and:

• they have a serious and incurable illness, disease, or disability;
• they are in an advanced state of irreversible decline in capability;
• that illness, 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; and
• their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.

People with dementia (even as their sole underlying medical condition) can meet these criteria. Dementia is a serious and incurable illness, disease, or disability (“major neurocognitive disorder”). A person with dementia can be in an advanced state of irreversible decline in capability before losing decision-making capacity.

It’s also important to note that the law doesn’t require that the decline in capability be caused by the incurable condition – for example, it could be caused by something such as severe frailty.  Dementia or the person’s state of decline can cause enduring physical or psychological suffering that is intolerable to the person and cannot be relieved under conditions the person considers acceptable.

An Ontario court decision, the College of Physicians and Surgeons of Nova Scotia and of B.C., and clinical practice that has developed around MAiD have all underscored that dementia can make a person’s natural death reasonably foreseeable. Therefore, assuming that an individual with dementia still has decision-making capacity, they can be eligible for MAiD under the current law and the proposed new legislation. These individuals give final consent immediately prior to the provision of MAiD.

Advance requests for MAiD

Under the current law, a person with dementia cannot receive MAiD after they have lost decision-making capacity – individuals must have decision-making capacity immediately prior to the provision of MAiD.

However, under Bill C-7, a person with dementia will be able to receive MAiD after they have lost decision-making capacity. Bill C-7 introduces a “final consent waiver.” That is, a person who has lost decision-making capacity can nonetheless receive MAiD if, before losing decision-making capacity:

• they have a serious and incurable illness, disease, or disability;
• they are in an advanced state of irreversible decline in capability;
• that illness, 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;
• their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining;
• they meet all of the procedural safeguards set out in the legislation;
• they enter into an arrangement in writing with the medical practitioner or nurse practitioner that the medical practitioner or nurse practitioner would administer a substance to cause their death on a specified day;
• in the written arrangement, they consent to the administration by the medical practitioner or nurse practitioner of a substance to cause their death on or before the day specified in the arrangement if they lost their capacity to consent to receiving MAiD prior to that day;

and if, before the provision of MAiD:

• they did not demonstrate, by words, sounds, or gestures, refusal to have the substance administered or resistance to its administration; and
• the substance was administered to them in accordance with the terms of the arrangement.

A person with dementia can get to the point at which they still have decision-making capacity, but their state of decline has become advanced and irreversible, their suffering has become enduring, intolerable, and irremediable, and their natural death has become reasonably foreseeable. Once they reach that point, they can enter into an arrangement with a clinician, specifying a day for MAiD, and MAiD can be provided on or before that day if they have lost decision-making capacity prior to that day. In this way, Bill C-7 will make it legally permissible for some people with dementia to make an advance request for MAiD.

It is important to note that Bill C-7’s proposed amendments relating to advance requests for MAiD do not go as far as recommended by the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying or the Special Joint Committee [of the House and Senate] on Physician-Assisted Dying. The Expert Advisory Group and Special Joint Committee both recommended that people be given access to MAiD through advance requests made after the diagnosis of a grievous and irremediable condition, but before the onset of intolerable suffering.

Still, the proposed amendments, if passed, would be a significant step in the right direction. The public would appear to agree – 79 percent of the more than 300,000 Canadians who responded to government consultations on MAiD supported the idea of advance requests where “a person is diagnosed with a medical illness that, over time, will affect their mind and take away their decision-making capacity, such as Alzheimers disease.”

Some people with dementia would no longer be forced to make a cruel choice – to die earlier than they would have liked (through MAiD or suicide) in order to avoid the loss of decision-making capacity (and therefore loss of eligibility for MAiD), or to live through all of the remaining stages of dementia experiencing enduring, intolerable, and irremediable suffering.

This article first appeared on Policy Options and is republished here under a Creative Commons license.