Introduction

Webcast archive: Palliative care study

This week, we discuss a new study linking euthanasia requests to receiving palliative care, and the latest euthanasia data from Quebec.

Webcast archive: Palliative care study

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

  • McGill study: Euthanasia requests precede palliative care
  • Third report from Québec’s Euthanasia Commission

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

MCGILL STUDY: EUTHANASIA REQUESTS PRECEDE PALLIATIVE CARE

  • On December 5th CTV News reported on a new study from McGill University Health Centre looking at whether euthanasia is actually used as “last resort” after palliative care has been tried, as promoters claim. This study shows that, though the reasons people ask for euthanasia relate to issues that could be addressed by palliative care (and consumer-controlled personal assistance services), people who ask for euthanasia are often not getting these services before deciding to die, or palliative care hasn’t had time to take effect.
  • Researchers examined patient files at two teaching hospitals and a long-term care facility. Between December 2015 and the beginning of June 2017, a total of 80 people requested euthanasia; 43, or just over half, were euthanized.
  • Demographic information about people who asked to die was provided, but the researchers didn’t give those details about the sub-group of people who were killed. Five people under 50 years old sought euthanasia; the youngest being 32.  The rest were split fairly evenly, with 36 people under 70 years of age and 39 between 70 and 92 years old.  Eighty-one percent (65) of the applicants had cancer-related illness.
  • The reasons people wanted to die were described in more detail than in most studies. The researchers listed three broad categories: “suffering” (cited in 92% of the files), “control” (75%), and “loss of future” (25%), plus several others.
  • In the “suffering” category, the authors listed (actual, current) “pain, nausea, or difficulty breathing” (cited by 30 people) whereas the “control” category included the wish to “avoid future suffering,” (cited by 14) “avoid loss of capacity” (mentioned by 4 people) and “avoid [a] bad death” (5 people). “Physical suffering” was contrasted with existential suffering (cited by 19 people), psychological suffering (16 people) and exhaustion (mentioned by 4).
  • Additional reasons given for euthanasia requests include:
    • 27 people wanted to control the time and manner of their death;
    • 16 wanted to minimize the impact of their condition on others;
    • 15 people were concerned about “loss of autonomy;”
    • 13 people cited the lack of treatment options and their deteriorating condition;
    • 10 wanted to “avoid loss of dignity.”
  • Ten people (12.5%) gave no reason for wanting to die.
  • The authors noted that “physicians are often reluctant to tell patients they are dying, that conversations about death occur very late in the illness, and that palliative care/hospice options are often not discussed.”
  • In fact, 7 people (9%) had Level of Intervention (LOI) forms in their charts (similar to a Medical Order for Life-Sustaining Treatment) that called for life-saving interventions, while an additional 16 people (20%) had no LOI form, causing a default to life-saving treatment.
  • As well, most people were not receiving palliative care when they made their request to die.
    • 7 people had palliative care consults more than 100 days before the request, and another 7 had palliative care consults in the three months before they asked to die.
    • 26 (32%) palliative care consults were requested 1–6 days prior to the request;
    • 16 (20%) had a palliative care consult the day of or after they asked to die;
    • 11 people, (14%) never had palliative care (usually because they refused).
  • As we mentioned, of the 80 people who asked for euthanasia, 43 (or 54%) were euthanized, while 37 people (or 46%) did not receive euthanasia:
    • 13 lost decision-making capacity after submitting their request;
    • 8 people “did not meet the eligibility criteria.” including:
      • 4 who were deemed incapable of making a decision;
      • 2 who weren’t at the end of life;
      • 1 who was not in a state of “advanced and irreversible decline;”
      • 1 whose suffering was not “constant and unbearable;”
    • 7 died before they could be euthanized.
    • 5 people “changed their minds.”
    • 2 chose palliative sedation (not clear if it was “continuous”),
    • For 2 people, no reason was documented for the denial of the request.
  • Of the 43 euthanasia, 38 took place after the federal law, with its 10-day “cooling off” period, went into effect. However the waiting period was waived in 60%, or 23 of those cases.  In 19 of the 38 cases, euthanasia was performed one to six days after the request was made.
  • Only imminent death or loss of capacity is supposed to justify cancelling the waiting period, but the reasons given suggest that doctors didn’t apply that safeguard:
    • Fear of loss of capacity was cited in 7 cases.
    • “Worsening symptoms,” was noted in 5 cases. As the authors point out, this “may or may not have implied that death or loss of capacity was imminent.”
    • In the remaining 11 cases,
      • 6 doctors didn’t give a reason for dropping the waiting period;
      • 3 files listed “avoiding provider-based delays”; and
      • 2 doctors cited “patient demand”.
  • The study found that only 14 people out of 80 (18% of files reviewed) had consulted a palliative care provider more than a month before requesting euthanasia. That’s no assurance that services were in place to control pain, help process grief and maintain autonomy.  Though Québec’s practice guidelines state that “[euthanasia] remains exceptional,” the researchers conclude that this is not what happens in real life. The “exceptional” practice of euthanasia is becoming the preferred treatment option for ill and disabled people.

THIRD REPORT FROM QUÉBEC’S EUTHANASIA COMMISSION

  • Three years ago, on December 10, 2015, Québec’s euthanasia program went into effect. Unlike the federal law, Québec provides euthanasia upon request to eligible persons, as well as  “Continuous Palliative Sedation” without the eligibility requirements and safeguards connected to a euthanasia request.
  • The Commission on End of Life Care released its third report on the province’s euthanasia program on December 7, covering the period from July 1, 2017 to March 31, 2018, with cumulative data from December of 2015. The Commission adjusted the reporting period to coincide with Québec’s fiscal year, which runs from April 1 to March 31.
  • As in previous reports from Québec, the most striking fact in this third report is the difference between the number of euthanasia reports submitted by doctors, and the number of euthanasia reported by institutions and the Collège des médecins du Québec. During the reporting period, the Commission received 708 forms (including five for deaths administered in previous years) while this second stream of information showed 845 cases of euthanasia (a difference of 142 deaths during the reporting period).  The report does not acknowledge, or attempt to explain this difference.
  • We did a summary of the report’s statistics, which we will put up on our website in the documents/reports section.
  • The Commission reported that 45% of the forms filed by doctors needed follow-up for additional information. Letters and telephone calls were required for 334 forms, and 90 doctors received a second letter when they failed to provide the information the Commission asked for.
  • The Commission examined a total of 782 forms during the reporting period,
    • 741 were looked at for the first time.
    • 41 were given a second look, in light of additional information received.
    • 658 were forms that came in during the current period.
    • 83 cases were held over from last year.
  • 727 cases were decided during the reporting period. Of those, the Commission found:
    • 90% (658) complied with the Québec eligibility criteria and safeguards;
    • In 7% of cases (50) no determination of compliance was possible, because:
      • Additional information was not provided (23 cases)
      • In 27 cases, the information provided was still not enough to decide whether the doctor complied with the law.
    • 3% (19 cases) did not comply with the eligibility criteria and safeguards. This included:
      • three people who were not eligible because they did not have a “serious and incurable illness;” and
      • two instances where the doctor who approved and performed euthanasia only met with the person on the day euthanasia was provided.
  • Similar figures are shown in the cumulative statistics of Québec’s program for the period from December 10, 2015 to March 31, 2017. While the Commission states that 1,493 euthanasia reporting forms were received from doctors during the period, Institutions and the CMQ report 1,664 euthanasia deaths.  Thus, 171 deaths are unaccounted for, probably unexamined, and may or may not comply with eligibility requirements and safeguards.
  • In the past three years, the number of euthanasia has increased steadily in every six-month period.
    • 161 – 1st period (12/15-6/16)
    • 280 – 2nd period (7/16-12/16)
    • 344 – 3rd period (1/17-6/17)
    • 437 – 4th period (7/17-12/17)
    • 542 – 5th period (1/18-6/18) (estimate based on 271 from 1/18-3/18)
  • Of the 1,374 total cases decided up until March 31 of this year,
    • 90% (1,245 cases) complied with the eligibility requirements and safeguards;
    • In 4.8% (67 cases) no determination of compliance was possible:
    • 5% (62 cases) did not comply:
      • 9 cases – Doctor didn’t speak to the person on different occasions to ensure persistence of suffering and wish to die, and capacity;*
      • 7 cases – Person was not eligible:
        • 5 cases – Person did not have a “serious and incurable illness”;
        • 2 cases – The person was not at the end of life;
      • 6 cases – Second doctor signed off before euthanasia request was signed;*
      • 5 cases – The person who countersigned the request was not a health care professional;*
      • 4 cases – The person did not have health insurance;
      • 2 cases – Doctor did not ensure compliance with safeguards.*
      • In the 29 remaining cases, the second doctor was not independent of the first. However this legal requirement was removed by the minister of health in February of 2017.

*In these cases, the failure of administrative safeguards could put the person’s life at risk.

  • So to recap, we have:
    • A “medical treatment” that was supposed to be an exceptional option in exceptional cases, that is now in regular use, regardless of whether palliative care is in place;
    • Substantial increases in the number of people being euthanized every six months, for a total of 1,664 (as of last March); not counting 1,831 continuous palliative sedations performed since 2015;
    • 171 deaths unaccounted for;
    • 67 deaths where compliance could not be determined;
    • 22 deaths where important procedural safeguards were not followed;
    • 7 deaths of people we know were not eligible for euthanasia; and
    • Hundreds of instances where doctors don’t file reports, refuse or were unable to provide information necessary to determine whether they complied with safeguards or the person was eligible for euthanasia.
  • Isn’t that enough evidence to show that something’s amiss?