Introduction

Webcast archive: Planning for the MAiD five-year review

This week, we discuss the work disability advocates need to do before the federal government reviews the euthanasia law in 2021.

Webcast archive: Planning for the MAiD five-year review

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

  • Planning for the MAiD five-year review
  • A new report of old data

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

PLANNING FOR THE MAID FIVE-YEAR REVIEW

  • Welcome to our 200th webcast!  We hope you find these programs informative, and at least a little bit interesting.  And we hope you like the visits by our four-footed friends.
  • Right, back to work.  Chapter 10 of the Medical Assistance in Dying law requires Parliament to review the Act, as well as “the state of palliative care in Canada,” five years after the law comes into effect.  The review is to be done by a committee of the House, or the Senate, or a joint committee, and the panel is supposed to produce a report describing how the law is working, including any suggestions for changing the statute.
  • The review process is supposed to begin “[a]t the start of the fifth year after the day on which this Act receives royal assent … ”
    • Some might interpret that to mean the review process should launch with the appointment of a committee in June of 2020, next year.
    • It could also be interpreted such that the review would start when the five year mark has been reached, in June of 2021.
  • Either way, as advocates, we would be well-advised to start preparing now for this important opportunity to evaluate how the law is operating in practice, and how it should be changed.
  • First, we need to ensure that the public will be able to have input into the review process.  Will there be a way for the public to submit comments?  Will Parliament hold hearings where members of the public can testify, or will testimony be by invitation only?
  • Then we must decide on our goals and strategy to use the process to help restrain assisted suicide and euthanasia (AS/E) and ensure effective safeguards and monitoring.
    • Are there improvements we’d like to see to the MAiD law?
    • Can we use this review as an opportunity to:
      • solve the problems with the monitoring program;
      • improve access to palliative care or community-based self-directed personal-assistance services?
    • Do we want to try to further limit eligibility or add more safeguards?
  • Once we have a wish list, we need to prioritize our goals.
  • We also need to anticipate and prepare to defend against likely efforts by euthanasia proponents:
    • To expand eligibility; such as by including the groups studied in the Council of Canadian Academies Reports:
      • Mature minors;
      • People with dementia (via advance requests);
      • Where the request is due to a psychiatric disability.
    • To remove existing requirements, such as that death be “reasonably foreseeable” or that the decline in capability be “advanced and irreversible.”
    • Or to soften safeguards; for example, by eliminating the independence requirements of the second medical practitioner or the witnesses, or completely removing the 10-day waiting period.
  • We’ll need to decide how much energy to put toward reaching our positive goals, and how much to put toward defending against potential losses.
  • We also have to choose the best strategies to achieve our goals and maintain the strictest possible eligibility criteria and safeguards?
    • One possible approach might be to compare the practice of AS/E under the MAiD statute with the expectation laid out by the Supreme Court in the Carter case that “the risks [to vulnerable persons] in permitting physician-assisted death can be identified and very substantially minimized through a carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.”
    • Another option might be to hold up the practice of AS/E against the gaps in Canada’s compliance with the Convention on the Rights of Persons with Disabilities.
    • A third approach is to go through the statute section by section and demonstrate whether it’s doing what it’s supposed to do.
  • We have to figure out what evidence or documentation we’ll need to support our positions.
    • What materials and evidence already exist? It would be great if we could trust the federal monitoring system to detect how discrimination and lack of services limit disabled people’s choices, causes ineligible people to be euthanized, and pressures folks into choosing AS/E.  But as we described in September and on November 16th and 30th of last year, the federal monitoring system won’t be gathering information that’s detailed enough to show these effects on disabled people.
    • We’ve done webcasts that focus on several aspects of the AS/E eligibility determination and safeguards, including:
      • Capacity determinations, external pressure and undue influence (February 29, & 16, 2018)
      • Conscience Rights, (October 7, 2016)
      • Informed Consent (March 31, 2017)
    • What evidence / documentation will we need to produce?
    • What resources (individual and institutional) do we have to generate the evidence we need?
  • There are many claims and statements in the preamble about the goals of the law.  But are these accurate in light of the language of the statute, the practice of AS/E and the barriers imposed by disability discrimination?
    • “Parliament recognizes the autonomy of people with a grievous and irremediable medical condition…” Considering that discrimination prevents people with disabilities from controlling where and how they live, is this really true?
    • “Robust safeguards … are essential.”  There are only five real safeguards; does that add up to “robust?”
      1. Person must meet all eligibility criteria;
      2. There must be a written, signed and witnessed request;
      3. The person must be informed of their medical condition and that they can withdraw the request at any time;
      4. A second independent medical practitioner must provide a written confirmation;
      5. Ten-day waiting period, (unless it’s waived).
    • It’s important to affirm the inherent and equal value of every person’s life and to avoid encouraging negative perceptions of the quality of life of persons who are elderly, ill or disabled.
    • Vulnerable persons must be protected from being induced, in moments of weakness, to end their lives.
    • Suicide is a public health issue that can have lasting and harmful effects. (This section says nothing about preventing suicides.)
    • MAiD “strikes the most appropriate balance” between the autonomy of those who wish to die and protection of vulnerable persons.
    • Consistent approach should be applied across the country.
    • There should be no penalties (loss of benefits) or adverse legal consequences for choosing AS/E;
    • The program should reflect the principles of the Canada health act: public administration, comprehensiveness, universality, portability and accessibility.
    • Freedom of conscience and religion.
    • The law should address the diverse circumstances and needs of various groups
      • Access to palliative care
      • Care for people with dementia
      • Mental health supports
      • Culturally-appropriate services for indigenous people
  • When looking at the specific provisions of the law, we can think about:
    • Whether the language in the law clearly expresses Parliament’s intent;
    • Whether Parliament should add a definition or state more clearly what they mean by a particular term;
    • Whether Parliament should change the section to make it more limiting or more lenient.
  • There are some loopholes in the law that exempt people from criminal responsibility for participating in assisted suicide or euthanasia.  When the law was being drafted we weren’t able to close them with amendment. Do we want to put effort into getting rid of them now?
    • Sec. 14 of the Criminal Code, which says a person cannot consent to their own death, does not apply to AS/E.
    • No person is guilty of culpable homicide if they do anything to help a medical practitioner to provide MAiD.
    • No person commits an offence … if they do anything, at another person’s explicit request[to help] that other person to self-administer” lethal drugs for MAiD.
    • the exemption in subsections (2) to (5) “applies even if the person … has a reasonable but mistaken belief about any … element of the exemption.”
  • Are there changes we want to make to the current eligibility criteria, or points that we feel are especially important to defend?  Currently, a person is eligible for AS/E if they:
    • Are eligible for government health services;
    • Are 18 years old;
    • Are capable of making decisions with respect to their health;
    • Have a grievous and irremediable medical condition, which means:
      • serious and incurable illness, disease or disability;
      • In an advanced state of irreversible decline in capability;
      • The illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable;
      • Their natural death has become reasonably foreseeable.
    • Have made a voluntary request, which is not a result of external pressure;
    • Give informed consent (including being informed of palliative care options, but with no mention of alternatives to institutionalization.)
  • Safeguards: As mentioned above, there are really only five safeguards; two of which carry over from the eligibility criteria, one is repeated, and another is actually an accessibility accommodation.  The medical practitioner must:
    • Be of the opinion that the person meets all eligibility criteria (1)
    • Ensure the request is: (2)
      • Written, signed and dated by the person
      • Signed by two independent witnesses
    • Ensure the person is informed: (3)
      • they have a grievous and irremediable medical condition;
      • they can withdraw the request at any time;
    • Ensure written confirmation from second (independentmedical practitioner; (4)
    • Ensure 10 clear days, unless death or loss of capacity is imminent; (5)
    • Give the person an opportunity to withdraw request before administering euthanasia (repeat 3)
    • Take all necessary measures to provide a reliable means for the person to understand information and communicate their decision. (this is not a safeguard, this is an accessibility accommodation which should be seen to first, not last);
  • The MAiD statute sets out a standard of care:
    • Reasonable knowledge, care and skill;
    • That complies with provincial laws, rules and standards.
  •  “Clarification” (9) “…nothing in this section compels an individual to provide or assist in providing medical assistance in dying.” This section does not address making referrals.  Does making a referral amount to “assisting?”
  • The statute mentions regulations for monitoring requests for and provision of AS/E, but not the evaluation and approval of requests. Given the deficiencies of the regulations, would it be worthwhile trying to amend the statute to bring the monitoring system in line with what’s called for in Carter, i.e. a system that is “scrupulously monitored and enforced.”
  • The law says death certificates “may” identify AS/E “as the manner of death.”  This has led to the classification of MAiD as other than suicide; is this something we  want to change?
  • On Friday, July 19 at 1 p.m., TVNDY and the Euthanasia Prevention Coalition will co-host a teleconference for advocates to plan for the five-year review.  Watch our webcasts, our website and Facebook page for details, or email us to learn how to get involved.

A NEW REPORT OF OLD DATA

  • Québec’s Commission on End-of-Life Care has issued a new report on the status of end-of-life care in Québec.  The report, which includes data only through March 31 of last year (2018), discusses palliative care, continuous palliative sedation, euthanasia administered or not administered, advance directives, and the activities of the Commission itself.  We’ll look at the report in an upcoming webcast.