Introduction

Webcast archive: AS/E data collection form

This week, we discuss the data collection form we've been preparing for the upcoming five-year review of Bill C-14.

Webcast archive: AS/E data collection form

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

  • Data Collection Form
  • Ontario Appeals Court rules in the McKitty case

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

DATA COLLECTION FORM

  • The events we’ve discussed over the last few weeks show how important it is to create a thorough record of what is happening under Canada’s Medical Assistance in dying (MAiD) program.
    • The Truchon court disregarded the evidence of Québec’s Commission on end-of-life care showing that ineligible people are being euthanized and safeguards are not complied with.
    • The suspension of the Lamb case shows that doctors were interpreting the “reasonably foreseeable” natural death criterion broadly even before it was declared unconstitutional.
    • The events surrounding the death of Alan Nichols show how the problems with capacity assessments can yield results that don’t reflect the wide range of “external pressures“ – social, economic and psychological factors – that drive people to request assisted suicide and euthanasia (AS/E).
  • Those of us who view death-hastening as a symptom of discrimination, devaluation and injustice believe strongly that AS/E, as practiced in Canada, make matters worse for old, ill and disabled people.  Though the problems reach beyond the Medical Assistance in Dying (MAiD) program, we can use the five-year review that’s required by Bill C-14 to look at the different kinds of pressures faced by the targeted populations.
  • We should note, however, that if Parliament ends up changing the law in response to the Truchon case, the five-year review may be postponed.
  • At our meeting this past summer to talk about the five-year review, which begins next June, we agreed that the government monitoring system won’t provide enough detail to show the extent of these problems, so we will have to do our own research.  We realized we needed a way to collect the stories that doctors, families, advocates and hotline volunteers were telling us about what was happening to people facing these pressures, and put them into a form that could help members of Parliament understand how end-of-life policies are affecting people in the real world.
  • Also, given our limited resources, we will have to do the research at minimum cost, without the support of universities, government agencies or media organizations.
  • The first step toward doing that research was to create a data collection survey form, that anyone can get to, that’s easy to use and can collect information about a variety of different situations, including:
    • Ineligible people being euthanized, or where providers don’t comply with MAiD safeguards.
    • MAiD or other life-ending practices that are not reported.
    • Where a “Do Not Resuscitate” order is put on a person’s medical chart without their knowledge or consent.
    • People being “counselled” or “encouraged” to accept MAiD, Continuous Palliative Sedation or to sign “Do not resuscitate” orders.
    • A person being deprived of medical care, food and fluids while being sedated. This is sometimes done to avoid eligibility criteria and safeguards required by the MAiD law.
    • Conflicts between the substitute decision-maker named by the incapacitated person, and other family members or the medical staff as to what care is in the person’s best interest.
    • Where a doctor “rushes” a judgment that care is futile, declaring that a person cannot recover from a coma or limited consciousness without enough time or rehabilitation;
    • A person chooses MAiD because of social or economic pressure, or they lack adequate palliative or home-care services.
    • A person is denied an effective, impartial means of communication to enable them to understand information and express their wishes.
  • To create a data collection tool, we had to take into account that information would come from many different sources; from newspaper articles, medical records, or even first-person accounts.
  • We chose the Google Forms platform because it was free, easy to use and is the most widely available choice.
  • The form collects information about:
    • The person filling out the form (such as a hotline volunteer,, an advocate or a medical professional);
    • The person helping or advocating on behalf of the person who needs assistance (such as a friend or family member, a journalist, a medical professional, or an advocate);
    • The person who needs assistance.
  • The form is divided into several sections:
    • Caller information;
    • Information about the person who needs help;
    • A description of the problem;
    • MAiD eligibility;
    • MAiD safeguards;
    • Outcome;
    • Satisfaction with palliative care services.
  • In order to understand the social and economic pressures that lead to requests for AS/E, the form asks questions about race, gender, disability, vulnerability factors, language and communication, the person’s living situation, services needed and received, and other data not collected by Health Canada’s reporting system.
  • The form has a section for describing the problem presented by the caller, which is linked to the “outcome” section later in the form.
  • There are two sections that relate directly to MAiD requests
    • The eligibility questions look at age, capacity assessments, external pressure, whether suicide prevention services were offered, and the elements of a “grievous and irremediable medical condition:”
      • A “serious and incurable illness, disease or disability …”
      • in an “advanced state of irreversible decline …”
      • that causes “enduring physical or psychological suffering that is intolerable and cannot be relieved under conditions the person considers acceptable;” and
      • their natural death has become “reasonably foreseeable.”
      • (We’re leaving the “reasonably foreseeable natural death” eligibility criterion in the questionnaire, because it applies to AS/E provided between 2016 and 2019, in the hope that an appeal will keep it in the law.)
    • The next section looks at whether all safeguards were complied with, including whether:
      • communication assistance was provided;
      • the application form was properly written, signed and witnessed;
      • the practitioner certified that the person met all eligibility criteria;
      • the 10-day waiting period was observed (or waived),
      • a second practitioner examined the person and approved the request; and
      • the person was reminded that they could withdraw the request at any time.
  • Section 7, which collects information about the outcome of the case, also asks what change would have been needed to achieve a better result.
  • Finally, Section 8 asks, if the person received palliative care services, how effective they were.
  • We are finishing up the French translation of the data collection form, and will make it available on our website as soon as possible.

ONTARIO APPEALS COURT RULES IN McKITTY CASE

  • On October 9, the Ontario Court of Appeals ruled that it didn’t have enough information to rule whether the common-law definition of death used in Ontario, where a person is considered dead when either the brain or the cardio-respiratory system no longer function, violated the right to religious freedom of Taquisha McKitty.
  • After an overdose in 2017, Ms. McKitty was connected to a machine that replaced her heart and lung functions.  When doctors decided she had no more brain activity and declared her dead, her family appealed the decision to turn off the machine, citing religious concerns.
  • Because the government of Ontario did not come in as a party to the case, the Court found that there wasn’t enough evidence to decide the constitutional question.  The court said that, though Ms. McKitty has since died, making this case moot, the issue will come up again, so it laid out how future courts could look at the definition of death, and how a doctor’s interpretation of death might affect a person’s constitutional rights.
  • Importantly, the Court did recognize that the determination of death was a legal, and not just a medical decision.