Friday, December 14, 2018

McGill study: Euthanasia requests precede palliative care.

Published by Toujours Vivant - Not Dead Yet.

This article was researched and written by Amy Hasbrouck and Taylor Hyatt.

On December 5th CTV News reported on a new study from McGill University Health Centre looking at whether euthanasia is actually used as a “last resort” after palliative care has been tried, as promotors 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 norm as it gains as the preferred treatment option for ill and disabled people.

Toujours Vivant-Not Dead Yet is a non-religious organization by and for disabled people. Its goal is to inform, unify and give voice to the disability rights opposition to assisted suicide, euthanasia, and other ending-of-life practices that discriminate against people with disabilities.  

They present a weekly online discussion in English every Friday at 3 p.m. to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community. 

Please click on the link: to join the webcast.

No comments: