Read our full statement on medical assistance in dying.
Dementia is a progressive, degenerative condition that worsens over time, and is fatal. Many people with dementia live full and active lives for some time after diagnosis.
A diagnosis of dementia does not immediately render a person incapable of making their own decisions. As dementia progresses, however, people with the disease will eventually become unable to make decisions about their own treatment and care.
The needs of people living with dementia at the end of life are unique and require special considerations. Family members and healthcare providers often need to make difficult decisions on behalf of people living with dementia in the later stage of the disease.
What is medical assistance in dying (MAiD)?
Medical assistance in dying or MAiD became legal in Canada in 2016, when the Parliament of Canada passed Bill C-14, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying).
This legislation allows for two types of MAiD in Canada, both intended to relieve suffering and ensure quality of living and dying:
- The direct administration of medications or substances by a healthcare provider to end the life of a person at their request.
- The self-administration of medications or substances by a person to end their life, prescribed by a healthcare provider and on the person's request.
What are the considerations for people living with dementia?
Under the current law, a person in the advanced states of dementia will likely not be able to legally consent to MAiD.
Consent to MAiD requires the person to be capable of:
- Retaining and understanding new information,
- Analyzing the information and
- Making an informed decision.
The effects of dementia in its advanced state may impair a person's capacity to make an informed decision about their end-of-life care.
Making an advance request
Though the ability to make an advance request would circumvent this problem, advance requests are not permitted for MAiD at this time. The current legislation states that a person requesting MAiD must have the capacity to provide consent immediately prior to the procedure (Note that this may change in the near future – see Recently proposed changes to legislation, below).
Advance consent often requires a mandated period of reflection that allows a person several opportunities to consider their decision and withdraw their consent if they choose.
In addition, every person will experience dementia in their own way. While symptoms and duration can vary from person to person, it is common for individuals to live with dementia for many years. A person's wishes, values and beliefs, may change over time. It can also be difficult to predict future suffering.
How the Alzheimer Society is engaged on MAiD
People living with dementia are individuals – first and foremost. They have the same rights as everyone else, including the right to participate in decisions about their life and care. We respect the right of all persons with dementia to advocate for their individual best interests, including advocating for access to MAiD through advance requests.
The Alzheimer Society provides people living with dementia in Canada the support and information they need to make informed decisions about their care, including at the end of life.
The rights of persons with dementia to advocate for access to MAiD, including through advance requests, should be respected. The Alzheimer Society will continue to inform persons with dementia about the legislative processes related to MAiD and any changes to the law (See Recently proposed changes to legislation, below).
The Alzheimer Society is also an advocate for improved quality palliative care that is adequately resourced and available to all Canadians with dementia as they near the end of their life. The right to access quality palliative care helps minimize unnecessary suffering and can improve quality of life for persons at the end of their lives.
The Alzheimer Society of Canada continues to advocate with governments and within the broader healthcare sector for improved access to care for people living with dementia in Canada. Our aim is to support people with dementia so they can live as best as possible for as long as possible, from the point of diagnosis to the end of life, in their homes and communities, and in all care settings,
The importance of advance care planning and palliative care
Advance care planning helps ensure that plans for future healthcare are carried out in accordance with the values and beliefs of the person living with dementia. That is why it's important for people living with dementia to make their wishes known to their family members – or a substitute decision-maker in some provinces – while they are still capable of doing so.
Advance care planning helps ensure that people receive the end-of-life care that they want and choose. Putting a plan in place as soon as possible after diagnosis means that palliative care – care that may address physical as well as emotional and spiritual needs at any point during an illness – can start earlier, improving the quality of living and dying for people with dementia and their family.
Advance care planning can also reduce stress for family members, guiding them when their loved ones with dementia are no longer able to communicate their wishes for health and personal care decisions.
Recently proposed changes to legislation
In September 2019, the Quebec Superior Court decision struck down the "reasonably foreseeable death" clause in Bill C-14 as unconstitutional.
In response to the Quebec Supreme Court's decision, the Government of Canada sought public consultation on the topic of MAiD in early 2020, through online questionnaires for the general public and roundtable discussions with experts and stakeholders.
After summarizing the comments and perspectives from the public, experts and stakeholders, the Government of Canada proposed changes to the MAiD law. Introduced as Bill C-7, An Act to amend the Criminal Code (medical assistance in dying), the proposed changes include:
- Repealing the eligibility requirement for a reasonably foreseeable natural death, and
- The person requesting MAiD would no longer have to give final consent.
In March 2020, a town hall was held to discuss these changes and more. Participants in this town hall included advocates Ron Posno and Phyllis Fehr. Both Ron and Phyllis live with dementia, and hope for further changes to Canada's current legislation on MAiD.
Watch the town hall. (In English only.)
What's happening now?
At the moment, the proposed changes to MAiD legislation have stalled due to the COVID-19 pandemic. However, the Alzheimer Society of Canada will continue to report on any new developments – please check this space regularly for updates.
Share your thoughts on MAiD
MAiD and advance requests for people living with dementia are complex issues with no easy answer. It's important that we at the Alzheimer Society of Canada are aware of what Canadians think about this topic. Whether you are in favour or against, or just want to know more, we are here to listen to you – write to us at [email protected].
You can also reach out to your local Society.
More useful links and resources
Medical assistance in dying. Alzheimer Society of Canada, October 2019. Our full position statement on this topic.
Dying with Dignity Canada. Through advocacy, public education and personal support, it is Dying With Dignity Canada's mission to ensure Canadians have access to quality end-of-life choice and care. Their website includes resources on advance care planning, palliative care and medical assistance in dying (MAiD).
First annual report on medical assistance in dying in Canada, 2019. Health Canada, July 2020. This report lists the numbers behind medical assistance in dying (MAiD) in Canada, broken down by province and territory, for the 2019 calendar year. This provides the most comprehensive portrait of MAID in Canada to date.
Medical assistance in dying. Government of Canada. On this governmental page, find information about medical assistance in dying (MAiD), including eligibility, how the request process works and the latest news on possibly changing legislation.
Proposed changes to Canada’s medical assistance in dying legislation. Department of Justice, March 2020. This governmental webpage describes the recently proposed changes to Canada's Criminal Code involving the legislation on medical assistance in dying (MAID).
The state of knowledge on advance requests for medical assistance in dying. Council of Canadian Academies, December 2018. This report examines the complexity of advance requests for medical assistance in dying (MAID), considering scenarios that may prompt an advance request for MAiD, evidence from related practices in Canada and abroad and other topics related to the issue.
What we heard report: A public consultation on medical assistance in dying (MAID). Department of Justice, March 2020. This report summarizes the findings from government consultations with the public regarding the topic medical assistance in dying (MAiD), setting the table for possible changes to legislation on MAiD in Canada.