Introduction

Webcast archive: Québec panel recommends euthanasia by advance request – part 2

This week, we continue our review of the call for advance requests and government consultation.

Webcast archive: Québec panel recommends euthanasia by advance request – part 2

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

  • A Québec panel recommends euthanasia by advance request – part 2
  • Update on the federal online MAiD survey

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

A QUÉBEC PANEL RECOMMENDS EUTHANASIA BY ADVANCE DIRECTIVE – PART 2

  • Last week, we talked about a report written for Quebec’s Minister of Health and Social Services, which recommends allowing medical aid in dying (MAiD) by advance requests even if the person has lost capacity to consent at the time of death. Today, we’re going to focus on the recommendations made by the expert group.
  • The recommendations are meant to address the different kinds of situations where an inability to consent would prevent a person from getting access to euthanasia
    • A person who has made the request and been approved for MAiD, loses the ability to consent before the procedure can be carried out. In recommendation 1, the committee says the person “retains the right” to receive MAiD.”  The recommendation seems to assume that the date of the euthanasia procedure is already decided; it’s silent on when the lethal dose will be given, or how that decision will be taken.
    • A person who has not applied for MAiD and has a sudden loss of capacity; for example, following a stroke or a car accident.  The panel says this person would not qualify for euthanasia. The experts encourage citizens to fill out advance medical directives (recommendation 6), which describe what life-sustaining treatment they want in case they cannot consent.
    • A person who is diagnosed with a condition that will cause them to lose the ability to provide free and informed consent, can make an advance request for euthanasia while they are still capable. The request will be processed and the procedure carried out … “at the appropriate moment.” This two-step process is described in recommendations 3-4 and 7-10.
    • Recommendation 12 says requests from people with cognitive deficits or mental illness, who have never been deemed competent to make medical decisions, should not be refused solely on the basis of their diagnosis.
  • Recommendation 3 proposes that an advance request for MAID should be made “after obtaining the diagnosis of a serious and incurable illness.” The experts added this requirement to try to prevent people from seeking MAID out of fear of the unknown. However in practical terms, this may result in people deciding to die just after receiving a terminal diagnosis, while they are still in crisis. Thus the road to hell is paved with good intentions.
  • Recommendation 4 describes the first step of the process.
    • The advance request must be “free and informed,” and the form must be signed by the person in the presence of a doctor. The doctor also signs the form after confirming:
      • the diagnosis of a “serious and incurable illness;”
      • that the person has capacity to consent to “care” and make the advance euthanasia request; and
      • that the consent is free and informed.
    • The advance request form must also be signed either “before two witnesses or a notary;” the notary is not required, and the experts don’t say the witnesses have to be disinterested or impartial. Also, speaking practically, how easy will it be to get a doctor and a notary in the same room to sign the form?
  • Recommendations 7 and 8 allow the person to choose someone to start the processing of the advance request “at the appropriate moment.” However the experts don’t say clearly how “the appropriate moment” is decided.  The explanation of suffering in recommendation #9 suggests the person will have written into their request some triggering condition or event, the authors offer no guidance on this question.
    • The committee emphasizes that the third party is a spokesperson, not a substitute decision-maker or guardian. Their role is only to inform the medical team “that a euthanasia request exists and to ensure that the request is duly considered.”
    • If the person who made the advance request didn’t choose someone to trigger the approval process, “or in the event of a refusal, withdrawal or impediment on their part” another person “with an interest in the patient” or an “impartial external authority” can take on that role. It’s unclear, in this sentence, what the word “refusal” means. Is it only about the person’s unwillingness to perform the function, or does it apply if the chosen person refuses to trigger the euthanasia approval because they believe the disabled person isn’t suffering?
    • The goal is to act in the person’s “best interest,” but who decides what that interest is, and how do they make that decision? We fear such judgments will be swayed by negative views of life with dementia.
  • Recommendation 9 outlines the shortened list of eligibility criteria for approval of an advance euthanasia request.
    • The person must be 18 years old and have health insurance.
    • They must have a “serious and incurable illness” which is marked “by an advanced and irreversible decline in his capacities.” (N.B. the English terms used in the federal law (“grievous and irremediable”) are stronger than translation from the French to English (“serious and incurable”) of the phrase used in the french versions of both the federal law and the Québec statute « grave et incurable. »)
    • As we described last week, the expert panel recommends a new, lower threshold of suffering, which is “assessed by the doctor and the multidisciplinary healthcare team and corresponds to what is expressed in the anticipated request for MAiD.”
      • from “unbearable” to “significant”;
      • from “cannot be relieved in a manner the person finds tolerable” to “difficult to relieve;” and
      • Includes the option of “existential” suffering.
    • On January 21, Québec’s Health Minister announced that the “end of life” criterion will be dropped from the existing statute. Media reports later in the week said the Province is planning to ask the Collège des médecins to draw up guidelines for expanding eligibility to people who want euthanasia due to mental illness.
    • Again, the person doesn’t have to be able to consent to euthanasia when the advance request is considered or the procedure is done, as long as they were able to give free and informed consent when they made the request, regardless of how long ago that was.
  • As with the federal law, the recommendation dealing with the second opinion (number 10), fails to say what happens if the second doctor doesn’t agree that the person is eligible.  In practice, this means that the primary doctor simply asks around until they find a second doctor who agrees that the person is eligible.
  • Recommendation 11 says that if a person is incapacitated, someone else cannot request MAID on their behalf. However, the authors say nothing about supported decision-making, or any alternatives to guardianship.
  • Recommendation 12 states that respect for the equal rights of people with intellectual disability or mental illness require that requests for MAiD from these people should be assessed on the basis of their ability to consent to euthanasia, and not on the basis of their diagnosis.  The authors don’t provide any guidelines for such assessments, however.
    • The experts cite the Starson v. Swayze Supreme Court case, which established the right to refuse psychiatric medications. They don’t deal with the fact that while a person can always change their mind about taking medications, euthanasia cannot be undone.
    • The authors recognize that the “stigma, discrimination, marginalization, oppression, violence and abuse” faced by people with intellectual and psychiatric disabilities has to be taken into account when evaluating euthanasia requests. However, they overlook the lack of community-based services that forces people into institutions. The view seems to be “respect their decisions, even if they’re forced into choosing between two unacceptable options.”
    • The authors cite a study (p. 130) showing that “almost 50% of [people] who are incapable of consenting to treatment are not recognized as such by the healthcare team following a standard clinical evaluation.” They mention the need for a more rigorous process because the decision to die is irreversible and suggest developing better tools for determining capacity.
  • Recommendation 14 calls for better access to palliative care, but doesn’t mention the idea of “euthanasia-free zones” where people can count on palliative care without having to worry about pressure to end their lives.
    • Insufficient palliative care could worsen symptoms causing loss of capacity (for example, agitation, pain, or depression).
    • On page 133, the authors finally admit that “the ability to make a free and informed choice assumes people have a full range of options from which to choose.” Yet in the same paragraph, they propose that “in the absence of adequate end-of-life resources, a person who has a life expectancy of more than three months, who is losing autonomy and who is no longer able to return to live at home could consider receiving MAID.” And there you have it, the right to die becomes a recommendation. How long before it becomes a duty to die?
    • Palliative care is suggested as a solution to caregiver stress and exhaustion, but personal assistance services are not mentioned.
  • The expert panel pays lip service to disability rights by supporting the rights of people with intellectual disabilities and mental illness to be considered for euthanasia, just like everyone else, while ignoring the effects of systemic discrimination. The authors fail to wrestle with the question of what will trigger the processing of a euthanasia request, and continue the slide toward lax standards and broader eligibility.

UPDATE ON THE FEDERAL ONLINE MAID SURVEY “PUSH POLL”

  • We wanted to give you a brief update on the federal online consultation on the MAiD program.
  • There’s been a lot of discussion this week on the interwebs about the problems with the online consultation survey.  These include:
    • plumping or “poll crashing,” (200,000 responses and counting.);
    • poorly-worded and slanted questions;
    • A linear scale that is not linear. (the scale for rating the importance of possible additional safeguards goes “0, 1, 2, 3, 4, no opinion” instead of using a straight 0-5 scale).
  • In order to prevent the voice of disabled people from being lost, activists from the Vulnerable Persons Standard (VPS) are asking people to use the PDF survey and to email a copy to vpsstatistics@gmail.com.  Despite the problems, it’s important to give your opinion; and send a copy to the VPS. The deadline is midnight on January 27.