Introduction

Webcast archive: The CCA Reports – Part II – Advance requests

Today, we examine the Council of Canadian Academies report on advance requests, and the authors’ bias against cognitive disabilities.

Webcast archive: The CCA Reports – Part II – Advance requests

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

  • The CCA Reports – Part II – Advance requests

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

THE CCA REPORTS: SOMETHING ABOUT US WITHOUT US – PART II: ADVANCE REQUESTS

  • Today, we’re continuing our series on the Council of Canadian Academies reports on expansion of eligibility for assisted suicide and euthanasia (AS/E) by looking at requests for euthanasia made before a person loses decision-making capacity.
  • The “advance requests” document is founded on the assumption that no one in their right mind would ever want to live with dementia. This seems a bit odd, given that the authors themselves bring up the “disability paradox,” (p. 52)  – where people with disabilities “report that they experience a good or excellent quality of life, when to most external observers these individuals seem to live an undesirable daily existence.”
    • The authors lay out the sides of the “philosophical debate,” (p. 51), as to whether the present self should control the fate of the future self, based on the values held by the present self (including negative views of disability).  Or, alternatively, should the future self be allowed to change their mind about wanting to die, based on new experiences, information, and feelings.
      • This is not a theoretical discussion, but a matter of life or death for real people.
      • The disability paradox predicts that the future person might well feel more positively about their life than the present self expects.
    • The authors report without question the fears of non-disabled people, that living with dementia must be so horrible that death would be preferable. Such concerns are usually based less on what people with dementia actually experience than on the feelings loved ones have about the changes they witness.  Like any other disability, people can adjust to dementia with time and proper supports.
    • Nor does the Council explore the subjective, first-hand experience of dementia. We don’t know:
      • Whether dementia might afford some positive experiences; such as enjoying sensory input and living more fully in the moment.
      • What creative options are available to manage the symptoms that are unpleasant to the person (where the treatment goal is not to render the person submissive and unaware), or
      • What benefits might be gained from no longer having to conform to societal expectations.
    • The report states that “it is impossible to gauge the relief of suffering in [people] who have died.” (p. 139) The authors seem to forget that, in order to feel relief (or anything at all), a person needs to be alive.
  • Advance directives are also proposed as an “escape” from other situations aside from cognitive disabilities:
    • The Council mentions “being…reliant on artificial nutrition and hydration” (pp. 74-75) as one of the unbearable fates that may inspire someone to create an advance directive, even though feeding assistance is used by many people with disabilities on a regular basis.
    • “Severe mental or physical disability with no reasonable expectation of recovery.” (p. 97) is the destiny to be avoided in a case study from Ontario.
  • The advance care planning discussion is limited in scope and contains what we believe to be an important error:
    • They state: “Goals of Care [Designation forms] and DNR orders are not generally considered advance directives because they are tools used in hospitals by the healthcare team to guide and document discussions of treatment plans.” (p. 37) This is simply not true.  In reality, such documents usually serve as specific instructions as to which life-saving treatments to provide, and which to withhold.
    • As well, the authors don’t take into account several kinds of advance directives, such as Medical Orders for Life-Sustaining Treatment, Level of Intervention forms, and others. As we’ve already talked about these forms often contain biases against life-saving care.
    • The authors only found ten court cases when they searched the CanLII database for the phrase “advance directive;” (p. 93) we did the same search and found 406 cases.  Obviously, some of our results were not exact or on point (e.g. “advanced directly”) and we can’t explain the difference.  But the point is: does looking at such a narrow list of cases really address the issues in play?
    • The inaccurate definition and narrow search cast doubt on the report’s conclusion that advance directives have “occasionally positive, mostly equivocal, and no negative effects on patient outcomes.” (p. 86)
  • There is little discussion of the impact of doctors’ or family members’ negative views of disability on the decision-making process.
    • The authors believe that “it is difficult to determine whether permitting [advance requests] would result in devaluation of the lives of people with neurocognitive declines.” (p. 146) When disabled people speak out about the devaluation and discrimination they’ve faced, it is seen as an individual issue rather than a systemic problem.
    • “Relational autonomy” – the idea that decision-making takes place within our social circles (making “true individualism” impossible) – is discussed in the context of discrimination against women. (p. 49) Yet the effects of disability discrimination are ignored.
    • One journal article cited in the report comes dangerously close to implying a duty to die when one’s existence is no longer good for your loved ones.  “[A]voiding suffering is not the primary reason many people would want an [advance directive] for dementia…One may simply want one’s life not to be capped off by [being a] burden on devoted loved ones… when your meagre reaction will provide them little if any gratification.” (p. 72) The same article is quoted again: “the advance request for euthanasia of a ‘happily demented’ patient would represent a great challenge” (p. 69).
    • The Working Group does point out that expanding eligibility for euthanasia to relieve the distress of family members or caregivers – rather than the person themselves – is a dangerous proposition. The authors observed that if “the requirement for express consent immediately prior to the procedure” were removed, substitute decisionmakers could “request [euthanasia] on behalf of another person.” (p. 48)
  • Although caregiving is described as a burden, the report doesn’t offer any solutions.
    • The Council fails to note the lack of consumer-directed home-based assistance. They don’t recognize that this shortfall is a reflection of the outdated, medicalized beliefs keeping people institutionalized, as well as the view that caregiving is primarily the responsibility of (female) family members.
    • Nor do the authors credit the fear that many people have of being “incarcerated” in institutions. The report reads: “Because a nursing home placement alone is insufficient to assume unbearable suffering, using this as the sole condition for euthanasia was deemed problematic.”  (p. 131) Yet that is essentially the position taken by people like Jean Truchon and Nicole Gladu; death, to them, is preferable to living in a nursing home. To argue that they should be eligible for euthanasia is to argue that society prefers to kill people than to provide home-based, consumer-controlled personal assistance services.  Is that what we really want to be saying?
  • Medical professionals are not meeting basic standards of care.
    • As we mentioned on January 11, between 2011 and 2018, Dutch physicians complied with due care requirements in only 12 of 16 cases where the person’s decision-making capacity was doubtful.  (p. 129) That’s only 75%. Dutch end-of-life clinics were also “involved in 19% of cases [where] due care criteria were not met” even though they handled less than 5% of all euthanasia cases. (p. 132).
    • The authors propose “some precautionary measures” to reduce the dangers of doctor shopping (p. 132).  However the euthanasia clinics’ high non-compliance rates proves the adage that you can put lipstick on a pig…but it’s still a pig.
  • Many people (including some people with disabilities) rank different impairments in terms of least to most undesirable; usually cognitive disabilities rank at the bottom. The biggest problem with this report is its complete failure to imagine a world where people get the supports they need, and dementia is not the worst thing that could happen to a person. It’s deeply disappointing that a report, that’s meant to be “the last word” on the subject, does so little to challenge outdated ways of viewing dementia and disability.