Introduction

Webcast archive: Fourth interim report on Medical Assistance in Dying

This week, we discuss Health Canada's fourth interim report, as well as a number of healthcare policies that put the health and lives of disabled people at risk.

Webcast archive: Fourth interim report on Medical Assistance in Dying

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

  • Fourth interim report on Medical Assistance in Dying
  • Health Care policy lacks foresight

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

THE FOURTH INTERIM REPORT ON MEDICAL ASSISTANCE IN DYING IN CANADA

  • Previous reports were released in June 2018October 2017 and April 2017, covering three six-month periods from June, 2016 through December, 2017. Our webcasts on September 21, 2018October 20, 2017, and May 5, 2017 provide an overview of those documents.
  • Between January 1 and October 31, 2018, 2,614 people died by assisted suicide or euthanasia, excluding Quebec and the territories.  Québec has only reported euthanasia figures up through March of 2018, and Health Canada is not reporting data from Nunavut, Yukon and the Northwest Territories because small numbers raise concerns for confidentiality.
    • All but one of those deaths were by euthanasia; the other was an assisted suicide.
    • The average age of those who died was 72 years;
    • Large urban Centres (more than 100,000 people) accounted for 56% of those who received AS/E, though they include more than 80% of Canada’s population.  That means people from rural settings are over-represented among those who choose MAiD (44% of AS/E deaths come from 20% of the total population).  It raises important questions about the levels of palliative care and other services available in rural areas.
    • During the reporting period, most deaths took place either in hospital or at the person’s home:
      • 1,148 (44%) took place in a hospital;
      • 1,107 (42%) were at the person’s home;
      • 140 (5%) of euthanasia were performed in a long-term care facility or nursing home;
      • 103 (4%) were done in a hospice; and
      • 114 (or 4%) were listed as “other/unknown.”  This is a catch-all category that includes unknown, undisclosed and suppressed data.  “Other” may include “…clinician’s office; funeral home; hotel/motel; [and] outdoor public areas…”
    • Seven percent of AS/E (193) were performed by Nurse practitioners.  The number and the proportion of euthanasia done by nurses are increasing.
    • Health Canada estimates that AS/E “accounted for approximately 1.12% of the estimated total deaths in Canada during this reporting period.” This is an increase from 1.07%, the estimate provided in the third interim report.  While this may seem like a tiny increase, remember that it’s comparing euthanasia deaths against all other deaths in the country.
  • Between December 10, 2015 (when Québec’s program began) and October 31, 2018, at least 6,749 people died by AS/E.  This figure doesn’t include the territories, and it only includes euthanasia performed in Québec through the end of March of 2018.
    • Only six people chose to self-administer (assisted suicide) rather than euthanasia.
    • The average number of AS/E deaths per month has increased by more than 300% since the first reporting period:
      • 85 per month during the first six months;
      • 146 per month during the second period;
      • 181 per month during the third period;
      • 261 per month during the fourth period.
  • Health Canada notes the MAiD law is “to be referred to one or more Parliamentary committees for review at the start of the 5th year … which will be June 2020.”
  • Parliament “may be expected to consider the [Council of Canadian Academies] reports in the context of such a review.”
  • Health Canada is betting heavily on its electronic reporting system.  The first summary report is due to be released in the spring of next year.
    • Only one such report will be available when Parliament begins to examine the MAiD program;
    • It’s very possible that problems with the monitoring and reporting system will only be detected during the preparation, or following the release of the first statistical summary.  Any necessary corrections to the system would therefore be made 18 months after the system goes online, and the corrected data won’t appear for at least another year, or in the Spring of 2021 at the earliest.
    • We’ve already described some of the ways in which the monitoring system falls short of providing the information necessary to determine if all eligibility criteria are met and all safeguards are complied with.  Some of these include:
      • There’s no way to know if the person was subject to “external pressure” either from direct coercion or life circumstances;
      • There is no way to verify that doctors are actually filing reports on euthanasia they perform;
      • There is no plan to detect and correct errors in the reports, or fill in incomplete information;
      • Demographic information is insufficient to detect discrimination based on race, disability, indigenous status, language, gender, or economic status;
      • There is no information on the reasons for the request or the nature of the person’s suffering;
      • The documentation gives no indication on whether suicide prevention intervention was provided or the person has the necessary supports to live without pain in their own home.
  • At this point it appears Parliament will review the MAiD law on the basis of four interim reports (which Health Canada admits contain incomplete information) and one statistical summary from the electronic reporting system, which will probably have some bugs, and can’t guarantee that doctors report every euthanasia performed.  This is why it is so important for advocates to work together over the next year to document the problems with the MAiD program.

HEALTH CARE POLICIES THAT LACK FORESIGHT

  • A couple of items reminded us recently of the negative human and economic consequences of health care policies that try to save money in the short term.
  • The first was the untimely and unnecessary death of Carrie Ann Lucas in February of this year.  An article by Sarah Kim in Forbes Magazine recounted what happened when Carrie’s health insurance provider, UnitedHealthCare refused to pay for the inhaled antibiotic she was prescribed to treat a lung infection she contracted in January of 2018.  The inadequate substitute caused a harmful reaction and failed to clear up the infection, leading to the loss of her voice, multiple relapses and hospitalizations, costing Carrie her life and the insurer hundreds of thousands of dollars; all for a short-term savings of $2,000.
  • The second reminder came from two blog posts by Bill Peace (April 10 and April 24) which describe the difficulty in obtaining wound care, and the lack of empathy and respect offered by medical professionals providing that care.
  • Mr. Peace describes dealing with pressure sores in stark terms.  Despite following wound-care recommendations to the letter, “I am in worse shape today than I was six months ago.  … No matter what I do I cannot relieve pressure on all four wounds. This is a lethal problem. The solution is obvious but unaffordable. A clinitron bed or air fluidized therapy would relieve all pressure. To purchase or rent such a bed would cost well into six figures and no insurance company will cover such treatment. For me to access a clinitron bed I would need to become septic [an infection that spreads through the bloodstream]. If septic I would be hospitalized and placed in a clinitron bed. Once sepsis is cleared I would be sent home and to the same bed that caused my wounds. An obvious pattern would emerge. Bouts of sepsis, an increasing number of wounds and hospitalizations. Over … time my body will weaken, sepsis will become increasingly difficult to treat and recover from. I will likely catch a very bad infection in the hospital and succumb to infection. This is a miserable way to die. It is a human rights disaster.”
  • It would make sense for managed care organizations, which claim to focus on prevention and wellness, to invest in preventative treatment to avoid greater expenses and suffering in the long-term.  But human nature and human institutions don’t seem able to handle long-term planning.  Which is why we’re facing infrastructure breakdowns, exhaustion of natural resources and climate change.
  • But Bill Peace points out that wound treatment issues go beyond poor planning and lack of foresight; they are the result of disability discrimination.
    • People who need wound care are disabled and disadvantaged: “We wound care patients are downtrodden – obese people, amputees, diabetics, the paralyzed, and the occasional terminally ill patient. We are a scruffy lot.”
    • Doctors say 90% of wound care patients don’t comply with treatment, but do not explain how the person is supposed to keep pressure off a wound when they have to sit for hours in the doctor’s waiting room, or change dressings daily when they can’t afford new dressings.
    • He describes being “seen as a wound, not a human being.”
    • He compares the complete coverage by his insurer of cardiac care and the well-appointed cardiac care suite, with the $20,000 deductible, the grimy carpet, worn furnishings and broken equipment of the wound-care area.
  • Mr. Peace notes the difference between empathy and “sentimentality and pity” in the delivery of health care. “Empathy in my estimation is the ability to acknowledge and identify the similarity of the human condition and create a foundation of mutual respect.” He says the other emotions come from “a position of superiority and fear,” and absolve the giver “from making systemic changes the would benefit all people.”
  • In addition to coverage of equipment to prevent wounds (pressure-relieving beds), as well as dressings and medical supplies, Mr. Peace says:
    • “Apathy must be rooted out with vigor.”
    • “Wound care must be understood in the larger social context of social supports” that people need but don’t have.
    • “Wound care patients are not compliant for a reason.” Instead of blaming the victim, barriers to compliance must be addressed by wound care professionals.
    • “Wound care nurses must lead the way.”  Only they can end the apathy that grips the field, and provide the empathy that patients need when they’re isolated.