“Hearing about medical assistance in dying (MAID) and knowing that she had control over her end of life was literally like the [oncologist] had said: ‘You two are going to Tuscany,’” says Kim King. “We were just so excited! Fast forward to when we realized, ‘Uh oh, wait! Audrey, you have to keep in touch. If you start to lose mental capacity you will lose this opportunity.’ It was like someone gave her a present and then took it away.”
Audrey Parker, King’s close friend, had late stage breast cancer, with metastases encroaching on her brain. She chose to die earlier than she wanted for fear of losing her capacity to consent and thus be eligible to receive MAID. Currently, MAID requires a person to provide consent during the initial assessment and then to consent again on the day of the procedure. If a person loses the capacity to consent before the date of the procedure, the procedure cannot go forward.
With an advance request, however, a person could make their wish for MAID clear prior to a loss of decision-making capacity and have that wish acted upon even after they lose capacity. Although advance requests for MAID are not currently allowed in Canada, the majority of the Canadian public believes they should be (Forum, Ipsos).
Parker was hoping that the requirement for repeated consent could be withheld, but in the end she opted not to risk losing control over having access to MAID. “Audrey had wanted to make it to Christmas and New Year’s Eve, her favourite time of the year,” says King. “But she lost that opportunity because of a poorly thought out federal law.” Parker died by MAID on November 1, 2018, surrounded by friends and family.
Where does Canada stand on advance requests for MAID?
In 2015, the Supreme Court of Canada ruled unanimously that the law prohibiting medically assisted suicide violated the Canadian Charter of Rights and Freedoms. The government then commissioned two reports on MAID (The Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying and The Special Joint Committee on Physician-Assisted Dying). Both specifically supported some form of advance request for MAID.
In 2016, Bill C-14 was passed by Parliament to regulate and legalize MAID in Canada. However, the bill denied advance requests for MAID and inserted a stipulation that the applicant must have capacity to provide informed consent immediately prior to the procedure, as a safeguard. This requirement has led to significant controversy.
Joshua Wales, a palliative care doctor in Toronto, is frequently asked by his patients about whether they are eligible to get MAID. “They want to know they have a way out,” he says. He had a patient who spent a significant portion of his last days suffering, worrying that he might become confused or lose consciousness on the morning of the procedure, and thus not be able to have it done.
To help explore this issue, the government requested an independent report from the Canadian Council of Academies (CCA) on the state of knowledge in this area (as well as in the use of MAID in mature minors and in people for whom mental health disorders are the primary reason). The CCA gathered topic experts from multiple fields and backgrounds, and many groups and organizations across Canada affected by MAID responded to a call for input. Their 244-page report is a synthesis of knowledge on advance requests and outlines concerns, evidence from other countries, specific examples and potential safeguards. The mandate from the government was to gather evidence, not make recommendations.
Who might make advance requests for MAID?
The report identified three different groups of people that advance requests for MAID might apply to, each involving different levels of uncertainty for those responsible for following the request.
1) Advance requests made when a patient is eligible for MAID: This would apply to a patient such as Audrey Parker, who had advanced breast cancer with brain metastasis, but wanted to live through one more Christmas. There was a significant chance her disease would affect her cognitive capacity to consent prior to the date she wanted for her MAID procedure.
2) Advance requests made after diagnosis but before MAID eligibility: This might include patients in the early stages of Alzheimer’s dementia who want to declare in advance what stage of their disease they would deem as “intolerable suffering,” and at which point in time they would want MAID, even if they have lost capacity at that future point.
3) Advance requests made before any diagnosis: This might include healthy adults who want assurance that they can set out criteria to access MAID if they were to have a sudden medical condition that left them unable to consent, like a car accident or stroke.
By dividing advance requests for MAID into these three groups, the report begins to separate specific concerns and form potential solutions for these different types of patients. This break down might serve as a basis for considering how advance requests for MAID might be introduced in Canada.
Jennifer Gibson, professor of bioethics at the University of Toronto and chair of the CCA’s working group on advance requests, worries that most of the public debate about advance requests has been simplified and focused on Alzheimer’s dementia (the second group), which itself is varied and has many stages that affect suffering and ability to consent differently. She asserts that there are significant differences in the issues and uncertainties that should be considered for each of the three groups, especially as they relate to the length of time between creation and implementation of a request. Jocelyn Downie, professor of law and medicine at Dalhousie University, who served on the CCA MAID working group for mental health as the primary condition, agrees that advance requests for MAID fall on a spectrum, and that arguments for allowing advance requests are more compelling the closer people get to the end of life, or as they move from the third to first group.
What framework can be used to introduce advance requests for MAID?
The data surrounding advance requests for MAID is limited and controversial. Only Belgium, Colombia, Luxembourg, and the Netherlands permit some form of them, though the use is rare (0.5–4% of all people dying from MAID) and reporting and analyses are inconsistent. Colombia allows advanced requests only in the context of imminent death; Belgium and Luxembourg only when a person is irreversibly unconscious. In the Netherlands, advance requests are only allowed for patients with some level of consciousness, because in order to qualify there, the patient must have ongoing suffering. As of 2005, an estimated seven percent of adults had an advance request in the Netherlands, but data on their actual use is limited. Thus, experience from other jurisdictions provides limited guidance for how to provide and safeguard advance requests for MAID.
How would an advance request for MAID be dealt with?
How would those responsible for acting upon the request for MAID determine the exact timing and confirm that the criteria set out by the applicant have been met? Trudo Lemmens, professor of health law and policy at the University of Toronto and a member of the CCA report panel, advises significant caution. He worries that at the time of creating advance requests for MAID, patients may not be able to appreciate their future state, or to determine all possible outcomes, which would leave those providing MAID with ambiguity for a life-ending decision. He shares an example from the Netherlands of a patient who had made a clear advance request for MAID early in the course of his Alzheimer’s dementia. However, as the disease progressed, and he reached the point in time where he had wanted to have MAID, his desire to proceed with MAID became ambiguous, complicated by the nature of his disease, leaving his family and doctors at an impasse.
Advocates of advance requests argue that criteria to trigger MAID must be objective and clear. Downie suggests, “When I lose capacity to choose MAID, that is when I want MAID.” She indicates that doctors are certified and entrusted to assess capacity, and that they use this ability currently when assessing for MAID in the first place. Downie points to other potential specific criteria, such as, “When I am in stage 7 of dementia [on the Global Deterioration Scale/Reisberg Scale]” or a “When I am in a persistent vegetative status as confirmed by two people for one month post-diagnosis.” King says she would have known “with every fibre of my being” exactly when Audrey Parker would have wanted MAID. They had talked about the details repeatedly, with multiple formal and informal witnesses.
Gibson says there will “always will be an amount of uncertainty, like anything in medicine… We can try for greater assurance, greater burden of proof, but the risk will never be zero.” The CCA report identifies a number of potential safeguards, such as formal counselling for people who wish to draft an advance request for MAID, mandatory updating, or a registry of advance requests for MAID.
How are other advance health care decisions managed?
Discussions around frameworks for advance requests for MAID inevitably involve terms such as advanced directives or advance consent for medical decisions. The legal application of these varies considerably across the country, but in general it is left up to the person who has the power of attorney or who is the legal substitute decision maker to consent to any medical decisions on behalf of the patient. Ideally they know the wishes of those they’re caring for and relay them to health care providers.
Downie argues that a regulatory process for advance requests for MAID must be separated from provincial advance directives legislation. She insists that advance requests for MAID should not be decisions put off for substitute decision makers at a later date, but rather clear and objective “decisions already made by the patient, being enforced at a later date.” She says that a standardized, consistent federal policy will serve as a safeguard and avoid the complications of the different advance directive laws across the provinces and territories.
Where do we go from here?
As a first step, some advocates are pushing for urgent change for patients who have already been assessed and deemed eligible for MAID. King is working with Dying with Dignity Canada on a campaign to remove late-stage consent, as part of Audrey Parker’s dying wishes. “We know there is an election looming, but this could be a win [for the government]… There are a lot of people pushing for it,” she says. Shanaaz Gokool, CEO of Dying with Dignity, argues that advance requests can be legalized first for this group, and then the discussion around other advance requests for MAID can continue.
Newly appointed Minister of Justice David Lametti was quoted in January 2019 by the National Post saying, “I’m interested in watching what happens and what is proposed, but I won’t commit the government to doing anything more than that.” If the government does not take any new initiative, the next step would be a five-year review of the current MAID legislation.
There is also the possibility of court challenges. However, “kicking it to the courts, you are kicking those people down… putting it on the backs of those grieving and suffering,” says Gokool. Although there are many ongoing court challenges related to MAID, none are currently specific to advance requests.
Most important, some say, is the continued public debate. Susan MacDonald, a palliative care doctor with the CSPCP and a working group member of the CCA, believes that the next step is a deeper systematic and detailed review of all possible safeguards by the CCA, with recommendations for stakeholders, including the public. Gibson agrees, and adds that, “The CCA report provides the synthesis of evidence and knowledge to inform Parliament, but more importantly serves to foster continuing conversation and debate in Canada around how we die.”
Ultimately, ending someone’s life who cannot actively consent to it at that moment, says Wales, “is something to think about very seriously.” He reinforces the importance of spending time listening to those who disagree with advance directives to make sure we’re hearing all sides. This, he says, will “make us all better and more thoughtful.”