Good and Bad News: Details from the Final Report of Québec’s Select Committee on the Evolution of the Act Respecting End-of-life Care

By Amy Hasbrouck
Director of Toujours Vivant - Not Dead Yet
President, Euthanasia Prevention Coalition

At the end of March 2021, Québec’s National Assembly, named a Select Committee to study the possibility of allowing euthanasia for people with a mental illness as their only medical condition, and access to MAiD via advance request for people who lose capacity to give consent due to a degenerative cognitive disability (such as dementia). In addition to the Council of Canadian Academies papers on Advance requests and Mental Disorders published in 2018, provincial bodies in Québec issued opinions on these topics; the ministry of health and social services released a report on access to MAiD for incompetent persons in 2019 (which TVNDY discussed in webcasts on January 17 and 24, 2020), and a discussion paper on MAiD for people whose only medical condition is a mental disorder was published in November of 2020. 

The Select Committee on the Evolution of Act Respecting End-of-life Care held 74 hearings, taking testimony from 77 experts and organizations, as well as reviewing 75 briefs, 2,000 comments and 3,412 responses to an online questionnaire. The Committee’s final report was released in December of 2021 (version française ici) and was summarized on December 10 by Alex Schadenberg. Since Québec has often been in the forefront on expanding access to euthanasia, we thought it would be a good idea to look deeper into the Commission’s final report and recommendations.

The report lists different classes of people who may be “incapable” of consenting to euthanasia when it is administered, yet who might want to access MAiD via an advance request:

· People with a severe intellectual disability or autism spectrum disorder;

· People who’ve had a sudden loss of capacity due to traumatic brain injury or stroke;

· People with a (degenerative) neurocognitive disorder, such as Alzheimer’s or Huntington’s disease

· People whose only medical condition is a mental illness

The Committee addresses the conditions under which each group might be eligible for euthanasia, and if so, whether an advance request for MAiD should be permitted.

People with a severe intellectual disability and autism – The Committee says that intellectual disability or autism spectrum disorder alone are not reasons for allowing euthanasia; the person would have to be eligible due to a grievous and irremediable medical condition in an advanced state of irreversible decline which causes intolerable suffering. As well, the Committee excludes the possibility of third-party consent to MAiD via a substitute decision maker, though it doesn’t address how supported decision-making or other informal models could be used – or abused – in the end-of-life context.

People who’ve undergone a sudden loss of decision-making capacity – The committee says that people who’ve lost decisional capacity due to stroke or traumatic brain injury, while potentially eligible for MAiD, should not be allowed to obtain euthanasia via an advance request, pointing to the existing option of creating an advance directive to refuse unwanted medical care. The report emphasizes that the range of possible outcomes from such sudden events is too broad to accurately predict the likelihood of retaining or regaining the ability to consent, or whether the resulting medical condition would make the person eligible for MAiD.

People whose only medical condition is a mental illness – The Committee recommended against allowing MAiD (either by regular or advance request) to people whose only medical condition is a mental disorder, even though they believed that the system proposed by the Association des Médecins Psychiatres du Québec (AMPQ) in the 2020 discussion paper could deal with problems related to capacity assessment, interference with the therapeutic relationship, and suicidal ideation caused by some mental illnesses. 

The committee said that, without agreement among experts on whether mental disorders can be said to be incurable and subject to irreversible decline, it would be impossible to determine if someone met those eligibility criteria. They also did not believe a sufficient level of “social acceptance” had been reached to justify extending access, saying they had not seen “any particular mobilization within society in this regard” and noting that less than half of respondents to the online consultation said that MAiD should be available to persons whose only medical condition is a mental disorder. As well the Committee noted the difficulties in making a correct diagnosis and providing appropriate treatment as factors in its decision. Finally, the committee cited concerns about the impact of MAiD on suicide prevention efforts as an important reason for recommending against expansion.

The remainder of the report deals with the Committee’s recommendations to allow people with a (degenerative) neurocognitive disorder, such as Alzheimer’s or Huntington’s disease, to make advance requests for medical assistance in dying. In its consultation document, the Select Committee announced (on p. 10) that Québec had eliminated the requirement that the person give “final consent” as long as euthanasia is administered within 90 days of the initial request

The committee sets the context for its internal debate by defining terminology and the parameters for the discussion. The definitions offered continue the tradition of avoiding the social, economic, and political realities that affect people’s end-of-life choices. 

The Committee defines “autonomy” as an individual’s ability to “act independently of any external influence,” which, in the context of end-of-life care, “is linked to respect for the integrity of an individual’s body and his or her freedom to agree on appropriate care, without the intervention of the State.” This disregards the fact that, as “the state” is the only health care provider, people have no option other than to “agree” with the “intervention of the state” even where it fails to offer “appropriate care;” i.e. adequate palliative care and home-based disability supports. Disabled people stuck in Québec nursing homes have been advocating for decades for community-based options, yet the province has consistently resisted adopting community-based self-directed personal assistance models used in Europe and the United States. 

The Committee limits the definition of “self-determination” to “the right to choose how and when one will die” rather than recognizing the broader right to control the circumstances under which one lives, including a right to receive services and supports necessary to relieve pain, retain independence and maintain the maximum quality of life until death occurs. As well, the committee’s definition of palliative care tends to exclude people with chronic illness and disability in favour of those who are at the end of life.

The Committee’s discussion of questions that fueled their reflections is laced with ableist assumptions about what it means to be unable to consent to care. The Committee states that it is “established fact” that neurocognitive disorders lead to a loss of autonomy and dignity, or “As Dr. Judes Poirier points out, ‘one does not die with dignity from Alzheimer's disease.’” Apparently, the committee members, and the “experts” they consulted, did not grasp that loss of autonomy is not caused by the disabling condition, but by public policies that dictate the warehousing of people with dementia. Nor did the Committee understand that ableist attitudes, paternalism, and the medical model espoused by persons in power who view disability from the outside might, in fact, contribute to the indignities they associate with dementia. 

The report said nothing about models of supported decision-making or assistance in managing home-based attendant services, which make it possible for people with cognitive disabilities to retain much of their independence and self-determination in other jurisdictions. Similarly, a world view that accepts bodies as leaky and accommodates incontinence as a “normal” part of the human experience would do much to decouple the idea of “dignity” from its requirement of rigid control over body and mind. These are insights a disability rights perspective would have brought to the Committee’s deliberations. Achieving this life-affirming and progressive view will not come about by providing death on demand whenever an adult messes their pants or chokes on food. Conflating “relief of suffering” with “medically-assisted death” is the inevitable outcome of using an ableist equation where “respect for the dignity of individuals” is allowed only “within the framework provided by the Act respecting end-of-life care.”

The Committee responds the question of whether expansion of MAiD should be contingent on better access to care by saying these must remain separate issues and by setting up a strawman argument; by presenting an exaggerated version of advocates’ position then attacking the distorted version as ridiculous. “[W]aiting until access to quality care is perfect before allowing an advance request would be tantamount to writing off that possibility.” On page 33 of the English version (p. 34 of the French report) The Committee addresses the issue of whether anticipated or contemporary suffering should trigger execution of the advance request in a section it calls “the question of happy dementia” (« la question de la démence heureuse ») The idea that a person could find enjoyment and peace of mind with dementia is framed as so unbelievable that the Committee speaks of it as if it were talking about UFOs. Fortunately, the Committee comes down on the side of looking at the person’s current status; “The medical condition of a person who has made an advance request should therefore be characterized by contemporary suffering.”

Beginning on p. 35 of the English report, the Committee examines whether allowing advance requests could lead to abuses. It notes that concerns about potential conflicts of interest, external pressure, fear of being a burden and devaluation of the lives of people with dementia have been raised since the Select Committee on Dying with Dignity in 2010, but that these “have not been observed since.” This does not account for the inability of Québec’s monitoring system to detect such problems; In other words, the absence of proof is not proof of absence.

Recommendations

The Select Committee’s recommendations include many ideas from the 2019 report produced by the expert panel for the Ministry of Health and Social Services, with some notable changes and additions. 

The first recommendation would allow capable adults “to make an advance request for medical aid in dying following a diagnosis of a serious and incurable illness leading to incapacity.” The committee believes that, given the irrevocable nature of MAiD, it is “crucial” that the person understand “the implications of the procedure” when making the request, and it is “essential that the person be fully informed” of the nature of their illness. The Committee says that with the diagnosis, “the person is usually given all relevant information about the course and effects of his or her illness. As well, it is very likely that the person will undergo some form of medical follow-up that will allow him or her to obtain more information about the disease and the various treatment and care options.” “Usually given all relevant information”? “Very likely” “some form of medical follow-up”? These are hardly ironclad assurances of complete and unbiased information about multiple treatment options and comprehensive follow-up care. Nor does the Committee ensure that the information will be unbiased and free of disability prejudice, only that, with a diagnosis, the person would not have to “imagine countless scenarios” based on conditions that could cause incapacity. On the other hand, the Committee elected not to impose “a minimum period of time between the … diagnosis and the filing of an advance request” in order to “allow the person to absorb the shock of being diagnosed with a neurocognitive disorder, thus avoiding making a decision under the influence of emotion.” They believed the possibility that a person with a late diagnosis might be prevented from making an advance request outweighed the drawbacks of making an advance request in an emotionally vulnerable state.

The second recommendation reiterates the physician’s obligation to ensure that the advance request is free and informed, but the Committee does not require a formal capacity assessment. Also, the information that must be provided about the foreseeable course and prognosis of the illness is highly susceptible to medical and ableist bias.

The third recommendation describes the form the advance request should take, along with specific procedures for how it is to be processed. However, given the compliance problems noted with Québec’s euthanasia program since 2015, it’s a safe bet that similar issues will plague the advance request procedure. 

Recommendation four fills a gap in the 2019 report, but just barely. In the 2019 report, the expert panel recommended that the person making the advance request select a third party to inform the medical team of the existence of the request “at the appropriate moment.” What events or conditions would trigger this obligation were never specified, thus leaving the designated third party with an undefined but crucial mandate. In the 2021 final report, the Select Committee recommends that the person indicate in the advance request what condition would trigger processing of the MAiD request, though the guidance provided is meager. “The person should be able to indicate in detail the manifestations of his or her future condition that he or she considers unbearable. The person could also specify the nature of the suffering he or she anticipates and considers intolerable.” This leaves far too many questions unanswered, such as:

· How is the person supposed to learn about potential manifestations of their condition?

o Will they rely exclusively on information provided by medical professionals and carers?

o How will the person get other perspectives, such as from people living well with dementia?

· Will the advance request form include a guide for deciding which conditions will trigger processing of the MAiD request?

· How often or severely should the condition manifest to trigger evaluation of the MAiD request?

· If the person didn’t provide clear or adequate guidance in their advance request, or their symptoms are different from those described in the request, is it still the third party’s responsibility to trigger the evaluation?

· What if the person changes their mind about the importance of the condition or behaviour that triggers evaluation of the request?

Recommendation 5, the Committee believes the advance request should remain in effect indefinitely and the person may amend the request as long as they remain competent. 

Recommendation 6, the Committee suggests that advance requests be added to the registry of advance medical directives.

Recommendation 7 states that a sticker be affixed to the back of the person’s health insurance card indicating that they have made an advance request for MAiD. 

Recommendation 8, the Committee further suggests that the person designate “a trusted third party” to inform the medical team of the existence of the advance request for MAiD. The Committee emphasizes that the third party must “expressly consent” to serve that function, and “fully understand [their] responsibility and the implications of the role.” Though they emphasize that the third party is not a guardian or substitute decision-maker, they never state clearly that the “trusted third party” will have to make a decision as to when “the moment agreed upon with the person making the request” has arrived. This is apparent in the description of what happens if the person has not designated a third party, or that person “is deceased or absent at the time the advance request should be reported.” (emphasis added) In that case, the care team decides when to process the advance request. The phrase “…at the time the advance request should be reported” suggests that some celestial alarm clock will ring when the person has reached the appointed hour, not that the third party will have to compare the list of conditions, symptoms, behaviours and events in the advance request (which might have been written five or ten years previously) with the person’s current status through observation and consultation, and make a judgment as to whether the conditions have been met. Nor does it offer any guidance on questions such as:

· How often should the third party ask the person how they’re feeling about their advance request without pressuring them to accept euthanasia?

· How often must the third party observe the person directly?

· If the person is receiving substandard care which is worsening their symptoms, does the third party have a duty to rectify the treatment problems before reporting the advance request for MAiD?

· What if the person exhibits behaviours not on their list of indicators, such as undressing, which don’t bother them, but which distress family members or care staff?

Recommendations 4 and 8 offer insufficient structure and guidance to the person making the advance request as to what should be included, and to the “trusted third party” charged with deciding when the request will be carried out. This is especially troubling given that much of the impetus behind the advance request is a desire to avoid “indignities” associated with experiences and behaviours that fall outside the range of social acceptability.

Recommendation 10 lays out the MAiD eligibility criteria for people with a neurocognitive disorder. The physician must be of the opinion that the person meets all of the following criteria:

a) is insured within the meaning of Québec’s Health Insurance Act;

b) has a serious and incurable illness;

c) is in an advanced state of irreversible decline in capability;

d) experiences constant and unbearable physical or psychological suffering, including existential suffering, which cannot be relieved in a manner deemed tolerable, as observed and validated by the physician.

These eligibility criteria walk back proposed modifications to the definition of suffering included in the 2019 report which would have changed “unbearable” suffering to “significant” and converted “cannot be relieved in a manner deemed tolerable” to “difficult to relieve.” The requirement that the person be at the “end-of-life” is removed because of the Truchon decision. The physician must also “confer with members of the care team who are in regular contact with the person making the request” and obtain confirmation from a second doctor who has examined the person.