Issue 1: What MAID Data Does and Doesn't Tell Us
Plus a roundup of this week's MAiD-related news stories.
For years, people with disabilities, academic scholars, and activists had warned that MAID expansion would impact people living in poverty or experiencing housing instability disproportionately. As MAID expanded to Track Two, allowing individuals whose death is not immediately foreseeable to access MAID, there have been many news stories featuring people with disabilities who say that poverty is the leading factor behind their decision.
However, in my previous reporting, Health Canada and the Canadian Association of MAID Assessors and Providers (CAMAP) stated that factors like poverty are insufficient to qualify for MAID. Did the recent report on Medical Assistance in Dying released earlier last month, tracking data for 2022, clear this up?
No reader, it did not.
While the report was extensive, it did not collect information about social determinants of health like race and socioeconomic factors, which Health Canada could link from other federal databases. In addition, there isn’t enough granularity - sometimes conditions are grouped under “Other” or simply listed as “Comorbid conditions,” making it harder to understand who is applying for and receiving MAID.
And recently, on Twitter, Statistics Canada stated that they do not list MAID deaths under MAID but rather by the underlying medical condition.
Read on for more details from the report and a list of news from the week at the bottom. Feel free to contact me if you have any ideas about what I should write about or research the internet for the newsletter.
Summarizing the 2022 MAID Report
MAID in numbers
13,241 people died of MAID in 2022, making it the third leading cause of death in Canada, accounting for 4.1% of all deaths.
Growth of 31.2 percent over the previous year and brings the total amount of people who have used MAID since its introduction in 2016 to 44,958.
463 people whose death was not reasonably foreseeable accessed MAID through Track Two, double the amount of Track Two provisions from 2021.
Who is receiving MAID?
The majority of people who received MAID had their underlying condition listed as cancer. In total, there are about 25 percent of people where the actual condition is unclear as it is either counted as “other” or “multiple comorbidities.” Of all the people with neurological conditions (12.6 percent), 28.5 percent or just over one in four are listed as having an “other neurological condition.”
What falls into these categories? If there are, for example, many people with ME/CFS or Ehler-Danlos Syndrome included, it may be a sign that current support for people with these conditions is insufficient.
Note that this is a graph that explains the primary conditions under which people apply for MAID. About a quarter of all these individuals had a second condition listed alongside that contributed to their health deterioration.
Overall, the majority of people receiving MAID were over 55, with an almost even split of males and females across age groups.
Underlying causes of suffering
The report states that to be eligible for MAID, “an individual must experience intolerable physical or psychological suffering that is caused by their medical condition or their state of decline and that cannot be relieved under conditions that the individual finds acceptable.”
What were these causes? Note that people could check off multiple boxes and sources of suffering. Here are the highlights:
86.3 percent selected the loss of ability to engage in meaningful life activities
81.9 percent selected the loss of ability to perform activities of daily life
59.2 percent said inadequate pain control
53.1 percent cited a loss of dignity
Palliative care and disability support
Just over three in four people who received MAID also received palliative care at some point in the past three years. Of the people who didn’t receive any palliative care, one in six said they did not have access to these services. In 2022, 36.8 percent of people receiving MAID reported receiving disability support, slightly lower than the previous year.
I have several questions about this data:
Did some people have to stop palliative care because it was too expensive?
How many people receiving disability support were living below the poverty line?
Why did so many people not have access to palliative care?
Track two MAID
There are a few interesting bits to note here. Women were much more likely to receive MAID when death was not naturally foreseeable (59 vs 41 percent).
Women were especially more likely to receive MAID for multiple comorbidities and other conditions. Women are also much more likely to experience gaslighting from their doctors and may have more trouble getting an accurate diagnosis or treatment for their complex chronic illnesses. It is also important to get other data to see whether BIPOC women are also disproportionately affected.
Strange tidbits and further questions
On self-administered MAID: “There were fewer than seven deaths from self-administered MAID in 2022 across Canada, a trend consistent with previous years.” I am curious why the report writes fewer than seven deaths rather than stating the number. I can’t seem to find the information in the report.
In some cases, some other supports and resources can help people alleviate suffering. Would other factors like timely healthcare, better access to treatments and pain medications, and access to social workers and nurses help?
How many people who chose Track One had trouble accessing timely cancer care or affordable palliative care?
MAID News from December 8th to 15th, 2023
December 11th
Global News | New Brunswick has highest increase in disability rates: Stats Can
By: Anna Mandin
The data, released by Statistics Canada last week, indicates that New Brunswick’s rate rose by 8.6 percentage points, compared to the national average of 4.7 percentage points. The province has the second highest disability rates in the province, now only 2.6 percentage points behind Nova Scotia.
The director of Ability New Brunswick, Haley Flaro, said she’s concerned.
“More than ever before we’re seeing people choose options such as Medical Assistance in Dying because of the failure of disability support programs, the failure to get adequate home support, the failure to get, being able to recruit workers, or not having accessible transportation to go to medical appointments,” she said.
December 12th
VIU | VIU professor using patient-oriented approach to medical assistance in dying research
Variath said the topic is contentious and has raised concerns amongst the general population.
“As a result, it’s easy to lose sight of what truly matters,” she added. “In the current state of our health-care system, disability activists and advocates for those facing social vulnerabilities worry that individuals may turn to MAID due to a lack of access to essential resources.”
Variath is taking a patient-oriented approach to her research. She said this approach is crucial to ensure that the study remains focused on achieving improved patient outcomes – whether that involves accessing MAID or other supportive therapies.
December 15th
The Canadian Press | 'Weighing our options': Ottawa open to further pause to expand assisted dying rules
By: Stephanie Taylor
The federal government is considering whether to pause its original plan tobroaden the rules that govern medically assisted dying so they include patients whose only underlying condition is a mental disorder.
"We're weighing our options," Justice Minister Arif Virani said Wednesday.
It would be the second time the federal Liberals have hit pause on the plan. The first came in February, when the government decided to impose a one-year delay amid widespread public and political concern.
That decision established a new deadline of March 2024 — one that now appears in jeopardy. Cabinet will consider the input of a joint parliamentary committee, as well as medical experts and other stakeholders, Virani said.
"We'll evaluate all of that comprehensively to make a decision whether we move ahead on March 17, or whether we pause," he told The Canadian Press in a wide-ranging interview.
Both options are "on the table," he added.