Webcast archive: No free choice – Christine Benoit’s story

This week, we look at the story of an Ottawa woman trapped in hospital, two dueling expert reports on expanding eligibility, and the progress of the update to the euthanasia law.

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

  • No free choice: Christine Benoit
  • The Experts face off: the Halifax Group v. EAG
  • Ministers ask for extension to revise the MAiD law

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

NO FREE CHOICE: CHRISTINE BENOIT

  • In October of 2017, Christine Benoit had surgery at Saint-Vincent Hospital in Ottawa.  By August of 2018, she was ready to leave the hospital, but due to a shortage of personal support workers (PSWs) to help with daily tasks at home, she was unable to return to her apartment. Except for brief weekly visits to her apartment (to avoid losing her rent subsidy), Ms. Benoit was isolated in the hospital and felt her health and spirits decline.
  • “It’s just depressing,” she told the CBC. “Being stuck in this environment is killing me. I can see day-by-day that I’m deteriorating.”
  • The CBC first brought attention to Ms. Benoit’s plight in a November 2018 article. In that report, the journalist quoted the CEO of the Local Health Integration Network, who said six other people were in the same situation.  The CBC followed up shortly after Christmas when Ms. Benoit said that she was thinking of filing a human rights complaint. Within a week, coverage had been arranged and Christine Benoit was able to go home.
  • She told CBC that she had to “micromanage her entire exit.” As of January 2019, the number of people stuck in the hospital for lack of home-care had risen to eleven. Ms. Benoit encouraged others to “keep strong and keep on them,” she said. “You’re not bothering them. Be the squeaky wheel.”
  • The media coverage of the issue did not feature the emotional language we’ve noted in articles about life-ending decisions by other disabled people.  The reporters keep the focus on the flaws in a policy that keeps people in the hospital when they would be happier, and their care would be less expensive, if they were at home.

THE EXPERTS FACE OFF: THE HALIFAX GROUP V. EAG

  • Two committees of experts have released reports on the topic of assisted suicide and euthanasia (AS/E) for people with psychiatric disabilities within a span of three weeks.  The reports reach very different conclusions.
  • The Halifax Group includes eight members of the Council of Canadian Academies’ working group which studied medical assistance in dying (MAiD) where a mental disorder is the sole underlying medical condition (MD-SUMC) (see our webcast from February 8, 2019). The group came together to draft recommendations on how to expand eligibility to people with psychiatric disabilities, since the CCA working groups were not asked to take a position or make recommendations.  On January 20, the Halifax group released MAiD Legislation at a Crossroads, a report that includes 12 policy and legislative recommendations, for example:
    • The federal and Quebec governments should not amend their laws to exclude all persons with MD-SUMC from accessing MAiD. (That double negative works out to a positive, meaning eligibility should be expanded to allow AS/E for people with psychiatric disabilities.)
    • The federal and Quebec governments should not require that the decision be “non-ambivalent.” (Another double negative, that translates to “it’s ok to euthanize the person even if they express mixed feelings about their choice.”)
    • The legislature should add a requirement that the decision to request MAiD be “well-considered” to ensure that the decision-making process is well thought out and not impulsive. The definition of “well-considered” should include:
      • The person has given the matter careful thought on the basis of adequate information and an understanding of their condition and any alternatives to MAiD (note these are not the Appelbaum criteria); and
      • The medical practitioners are of the opinion that the person would not change their mind about wanting euthanasia if MAiD were not provided.
    • Clear standards for clinical assessments of MAiD requests by persons with MD-SUMC should be drawn up by provincial regulators.
    • Establish training programs for providers, and a consultation service.
    • Improve mental health services and community supports.
    • The federal government should establish an after-the-fact peer review process for all MAiD requests where the person did not have a terminal diagnosis. This would be in effect outside Québec for an initial period of five years.
  • In response, 12 experts produced a report entitled Canada at a crossroads challenging what they see as flawed conclusions of the Halifax Group report, and to provide “an evidence-based review and recommendations to guide policy regarding MAiD and mental disorders.” The Expert Advisory Group (EAG) includes three of the remaining members of the Mental Disorders working group, three members of the Advance Request working group and six other experts (three of whom have lived experience with physical or psychiatric disabilities).
  • The EAG believes that a central message of the CCA expert panel was that there was no agreement on whether MAiD for mental disorders could be safely introduced without unduly risking the lives of vulnerable persons, and that determinations of irremediability and irreversible decline cannot be made for mental illnesses at this time.  The EAG therefore recommends the law reflect that people who apply for MAiD only because of a mental disorder cannot fulfill MAiD eligibility requirements.
  • The EAG also supports a “lack of reasonable alternative criterion for all MAiD applications, as is required elsewhere in the world.”  The EAG believes this criterion is especially important as the “reasonably foreseeable natural death” criterion is removed.
  • Finally, the EAG endorses the Halifax Group’s recommendations for improving access to mental health and community-based supports.

MINISTERS ASK FOR EXTENSION TO REVISE THE MAID LAW

  • On February 17, Attorney General David Lametti filed a motion asking for an additional four months to amend the MAiD statute.
  • In the Truchon decision, a Quebec Superior Court found that the federal law’s requirement that a person’s natural death must be “reasonably foreseeable” was too restrictive and therefore unconstitutional. The federal government was given six months to update the law. Parliamentarians reportedly need more time to review proposed changes. If nothing is done by March 11, the “reasonably foreseeable” requirement will be suspended in Quebec.
  • In a joint statement, Minister Lametti and Health Minister Patty Hajdu recognized “that medical assistance in dying is a complex and deeply personal issue.”  The ministers said they remain committed to responding to the Court’s ruling “as quickly as possible.”
  • We note that Carla Qualtrough, Minister of Employment and Disability Inclusion was not included as an author of the joint statement.
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