Introduction

Webcast archive: Québec panel recommends euthanasia by advance request

Today, we discuss a report being used to inform the government's response to the Truchon decision.

Webcast archive: Québec panel recommends euthanasia by advance request

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray & Taylor Hyatt discuss:

  • Québec panel recommends euthanasia by advance request
  • Online consultation for medical assistance in dying law

Please note that this text is only a script and that our webcast contains additional commentary.

A QUÉBEC PANEL RECOMMENDS EUTHANASIA BY ADVANCE REQUEST

  • Welcome to our first webcast of 2020. For the next couple of weeks, we’re looking at a report written for Quebec’s Minister of Health and Social Services, on the possibility of allowing advance requests for euthanasia for people who are unable to consent. This report is important because it is part of the evidence used by the federal government to justify expanding eligibility for medical assistance in dying (MAiD) to people who cannot consent when euthanasia is given.
  • As with the Council of Canadian Academies reports published in December of 2018 (see our webcasts for January 11January 18February 1, and February 8 of 2019) , it does not appear that any people with disabilities were included on the panel who wrote this report; nor did it reflect a disability rights perspective.  This creates flaws in the report:
    • Language used to describe disability is biased and evokes images of tragedy and pity.  The report refers to some disabled people as “bed-bound” “prisoners of their bodies” and without “hope of a cure.” Such language gives the lie to the panel’s claim (on page 21) that they have no preconceived idea of what constitutes a “good life.”
    • The lack of a disability rights perspective also means the report does not take into account the effects of social policy on disabled people’s life choices. The panel talks about the “values that guided their reflection,” (such as dignity, liberty and autonomy) and celebrates Québec as a “free and democratic society.” Yet they fail to mention that disabled people are often forced into institutions for lack of home-based services.
    • The report cites the Law on Health and Social Services, which says such services must be provided in a way that respects the “dignity” and “autonomy” of the person.  But there is no mention of community integration, nor the pending lawsuit against the province’s health ministry over  inhumane conditions in nursing homes.
  • The authors proposes changes to the eligibility criteria related to suffering:
    • Under the current law, the person must experience “constant and unbearable physical or psychological suffering which cannot be relieved in a manner the patient deems tolerable.”
    • The panel proposes that the person must have physical, psychological or existential suffering that is “significant and difficult to relieve.”
  • The experts also propose new wording for the “end of life” eligibility criterion which is supposed to clear up any confusion.
    • Under the current statute, the person must be “at the end of life.”
    • The panel proposes that the person must be “on a trajectory toward the end of life for which the doctor can reasonably foresee their death.”
  • The panel justifies the changes by saying suffering from dementia is different from what happens with cancer, and that they’re trying to clarify what “end of life” means.  But that doesn’t explain why they have also made the standards more relaxed:
    • from “unbearable” to “significant”;
    • from “cannot be relieved by a means the person finds tolerable” to “difficult to relieve;” and
    • from “at the end of life” to “on a trajectory toward the end of life for which the doctor can reasonably foresee their death.” (after all, why use five words when 17 will suffice.)
  • The expert group described five situations in which people may be unable to consent to euthanasia:
    • They have a condition that causes cognitive abilities to decline, like Alzheimer’s or Huntington’s disease;
    • They have a sudden brain injury (such as a stroke, aneurysm or head injury) causing a coma or other changes in consciousness;
    • The person has never been competent to consent to medical care, and thus is unable to consent to euthanasia (such as people with severe intellectual disabilities);
    • They have a mental illness that impairs a person’s ability to make logical judgments about their situation;
    • The person loses capacity because of secondary effects of their illness or medication.
  • The panel doesn’t address the difference between the ability to consent to “health care” versus consenting to a life-ending procedure. Nor do the authors deal with barriers to consent caused by discrimination or other factors, such as:
    • lack of communication access;
    • learned helplessness and compliance;
    • lack of stimulation leading to cognitive deficits, or poor education causing an inability to read;
    • an unmet need for supported decision-making;
    • professionals’ use of jargon;
    • negative judgments about a disabled person’s quality of life that limit options offered to the person.
  • In its description of capacity to consent to care, the report mentions the work of Thomas Grisso and Paul Appelbaum as the “standard” in the field, but fails to list the Appelbaum criteria; four cognitive abilities needed to make medical decisions. They include being able to:
    • Understand information;
    • Apply the information to one’s own situation;
    • Weigh the benefits and risks to arrive at a decision; and,
    • Express one’s choice.
  • The authors state that this is not the test used in Québec.  Instead, courts in the province look at:
    • Whether the person understands the nature of their illness;
    • Whether the person understands the nature and goal of the proposed treatment;
    • Whether the person understands the risks associated with the treatment;
    • Whether the person understands the risks of not receiving the treatment;
    • The ability to consent is not impaired by their illness.
  • The experts refer to some precedents from the U.S., including the Cruzan case and the Patients’ Bill of Rights, which established that a person may refuse treatment. But the authors skip over the U.S. Supreme Court cases that found there was no constitutional right to assisted suicide.
  • Chapter five focuses on the philosophical question, summed up by Maxime Huot Couture of Living with Dignity: should the present self be allowed to force the future self to commit suicide? Though the arguments presented in the report suggest the answer should be “No” the panel recommends allowing advance requests for euthanasia anyway.
    • The authors dismiss the fact that people adjust to their disabilities (“the disability paradox”) by saying that this process depends on relationships, and since the mental decline of dementia makes a person unable to maintain relationships, then they can’t adjust.
    • The panel also feels obliged to point out that there is disagreement in the disability community over these issues, without recognizing that disability rights groups oppose AS/E based on policy concerns, while disabled individuals usually support MAiD for personal reasons.
  • Like the CCA report on advance requests, this document includes the kind of problems of fact, logic and consistency that result from excluding the disability rights perspective on an issue that is, at heart, a disability rights issue.
  • Next week we’ll focus on the specific recommendations offered in the report.

FEDERAL CONSULTATION TO MODIFY THE MAiD LAW

  • This week, the Canadian government opened a public consultation on potential modifications to the MAID law following the Truchon decision.
  • The questions in the online survey focus on effectiveness of the current safeguards, ideas for future ones, and circumstances under which advance requests should be allowed. Some questions have multiple-choice answers, while others allow short answers.
  • The questions, and the framework of the whole project, reveal a bias in favour of euthanasia and expanding eligibility, and a poor grasp of disability rights. For example, rather than saying “more than 6,700 people have chosen MAiD since 2016” the review of MAID in Canada states that “more than 6,700 Canadians who were suffering unbearably chose to die peacefully with the help of a physician or nurse practitioner.” One of the questions asks whether those who seek euthanasia should be made aware of disability supports, rather than ensuring that people receive the supports they need to avoid forced placement in institutions.
  • We encourage everyone to have their say in the consultation.  For more information, visit the website. Besides the online questionnaire, you will find a PDF version which can be filled in and sent as an email attachment, or printed, filled out by hand and mailed in. The deadline for submissions is the end of the day on January 27.