Understanding Advance Requests for MAiD
An advance request for medical assistance in dying (MAID) is a request created in advance of a loss of decision-making capacity, intended to be acted upon under the circumstances outlined in the request after the person has lost decisional capacity (competency).
There is broad support among Canadians to allow advance requests for MAID. The majority of Canadians are saying that they want the right to specify the conditions under which they would opt for an assisted death while they are still healthy.
Support for advance requests is overwhelming. A January 2023 Nanos/Globe & Mail survey found that 87% of Canadians support advance requests for those with a grievous and irremediable (serious and incurable) condition, while 81% support advance requests detailing the circumstances (quality of life, medical conditions, ability to communicate) when they would want to receive an assisted death. These numbers were even higher than a January 2021 Ipsos survey commissioned by Dying With Dignity Canada.
One of the significant reasons Canadians give about why they want advance requests is to address the fear of future dementia.
It’s a complicated issue under the current MAID rules.
Until March 2024, certain mental illnesses are excluded from MAID if they are the sole underlying medical condition. These conditions are primarily within the domain of psychiatry, such as depression and personality disorders.
Neurocognitive and neurodevelopmental disorders, or other conditions that may affect cognitive abilities, are NOT part of this exclusion, so people with dementia (including Alzheimer’s), Huntington’s or Parkinson’s disease may qualify for MAID today.
However, it depends on what state they are at
Someone with an early diagnosis may not be suffering “intolerably” and so wouldn’t qualify.
Someone in the late stages of these diseases may have lost mental capacity, so they would lose the ability to consent.
Having advance requests would remove this “fine-tuning” by allowing individuals to apply without having to worry about what specific stage they are currently at in their diagnosis.
Advance Requests were one of five areas which Bill C-7 (March 2021) specifically identified as requiring further investigation and consideration by the government for future legislative changes. As such, the parliamentary Special Joint Committee on MAID included this topic in their lengthy deliberations.
Federal legislative change in the area of advance requests is already under consideration as a private member’s bill. Bill S-248 was introduced in the Senate by Senator Pamela Wallin and had its first reading in June 2022. This would amend the Criminal Code to allow someone whose death is not reasonably foreseeable to waive final consent to MAID:
If they lose mental capacity and allow MAID to proceed if, after diagnosis of their condition, they meet the conditions outlined in their declaration.
These conditions must be documented and witnessed.
The agreement would be valid for a maximum of 5 years.
This bill is in its second reading in the Senate. It will be passed onto the House of Commons for review if it clears a third reading. Even if this private member’s bill doesn’t get passed, it provides a good framework for the government to incorporate into any new legislation addressing advance requests.
Currently, in Canada, advance requests for MAID are only permitted under two specific circumstances:
1) Waiver of Final Consent (also known as “Audrey’s Amendment”): Under Bill C-7, this waiver allows someone who has already been assessed and approved for MAID and whose death is reasonably foreseeable to sign a waiver with their MAID provider which would allow the physician or nurse practitioner to proceed with MAID provision on a chosen date in the future if the applicant has lost the capacity to consent at that future time.
This could be as a result of a brain disease, such as metastatic cancer or a neurological disorder, the need for strong medication, such as opioids or palliative sedation, or from advanced dementia.
If that day arrives and the individual still has mental capacity, they may proceed or decline. The applicant can sign a new waiver of final consent with the MAID provider, specifying another future date.
2) Advance Consent: Under Bill C-14 (June 2016), if you are eligible for MAID and opt for oral self-administration, you may provide advance consent through a written agreement with your MAID provider to complete your assisted death by injection if self-administration fails. This means if someone who orally self-administers the MAID medication becomes unresponsive but doesn’t die, the MAID provider may proceed with the injection. Note that less than 1% of MAID provisions in Canada are through oral self-administration.
The final report of the Special Joint Committee on MAID published its final report with recommendations on Feb 15, 2023. Recommendation 21 of the report states: “That the Government of Canada amend the Criminal Code to allow for advance requests following a diagnosis of a serious and incurable medical condition, disease, or disorder leading to incapacity.” Note that the recommendation is to allow this only after a diagnosis.
As the provision of MAID falls under provincial healthcare, the Committee also recommended that the federal government work with the provinces and territories to develop necessary safeguards for advance requests as well as interprovincial recognition of advance requests. This way, someone who draws up an advance request in one province will be recognized anywhere in Canada.
The Committee also noted the following possible safeguards which provinces and colleges should consider to accompany advance requests:
The advance request (AR) should be made after a diagnosis is present;
The AR should identify objective criteria for intolerable suffering (such as not recognizing family, being unable to feed oneself, being bedridden);
The patient should ensure their wishes are known to healthcare providers and family;
The AR should be periodically reaffirmed;
A central repository should be developed to register advance requests;
Healthcare supports should be made available to ensure a well-informed decision.
Note that there is no assurance that the recommendations of the Committee will be incorporated into the draft legislation. It just provides guidance. The draft legislative changes are expected to be presented in late 2023 for implementation in March 2024.
Quebec has its own MAID legislation (Bill 52). The government has recently presented a draft of Bill 11, which would allow advance requests for people with a serious and incurable illness, including neurodegenerative diseases like Alzheimer’s. Other noteworthy parts of the Bill are (1) all palliative care hospices will be obligated to provide MAID, and (2) there’s a specific exclusion of people with mental disorders as the sole underlying medical condition having access to MAID. If passed, the mental illness exclusion will likely differ from the pending federal legislation.
Dying With Dignity Canada (DWDC) is pleased that the recommendation to allow advance requests for those diagnosed with a serious or incurable condition, disease, or disorder leading to incapacity has been made.
However, the release of the Final Report, Medical Assistance in Dying – Choices for Canadians, does not mean that advance requests are legal. An amendment to the Criminal Code has yet to be formally legislated. This is the final step needed in order for advance requests to be permitted.
Note that the proposed recommendation in the Final Report is to allow advance requests only after diagnosis of a qualifying medical condition. While this is a good starting point, what DWDC would like to see in future legislation, along with more than 3 out of 4 Canadians, is the ability for someone to complete an advance request while still healthy (that is, prior to any diagnosis).
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