Study: “Early experience with medical assistance in dying in Ontario, Canada: a cohort study”

"It's important that this is not driven by lack of palliative care. We don't know about the profile of the people who are requesting it [MAiD; medical assistance in dying]."
"We know that the less privileged are less likely to access all kinds of end-of-life care. There is a broad lack of awareness about options such as palliative care and hospice care."
"We need to take data like that and act on it. Whether you support MAiD or not, the learning is in finding out [what] gaps there are."
Dr.James Downar, critical care specialist, palliative care, The Ottawa Hospital, University of Ottawa

An online government survey asking Canadians for their thoughts on medically assisted dying closed Jan. 27 after garnering nearly 300,000 responses. (CBC)

Demographic of patients: by the numbers:

• 74.4 years: mean age of Ontario MAiD recipients;
• 77 years: Mean age at death for all decedents;
• 24.9%: proportion of MAiD recipients in top 20 percent of income earners;
• 15.6%: Proportion all decedents in top 20 percent of income earners;
• 17.1%: proportion of MAiD recipients in lowest 20 percent of income earners;
• 26.1%: proportion of all decedents in the lowest 20 percent of income earners;
• 6.3%: proportion of MAiD recipients who lived in institutions at time of death;
• 28%: proportion of all decedents living in institutions at time of death;
• 48.5%: proportion of MAiD recipients married at time of death;
• 40.6%: proportion of all decedents married at time of death;
• 25.7%: proportion of MAiD recipients widowed at time of death;
• 35.8%:proportion of all decedents widowed at time of death.

The widely held belief that those receiving medical assistance in dying in Ontario in its first years were the poor and the vulnerable has been entirely dispelled thanks to a new study where Ottawa researchers tapped into records of close to 290,000 deaths, comparing Ontario MaID deaths to all deaths in the province. The conclusion that was reached through the study, published in the Canadian Medical Association Journal, was that MAiD recipients were more likely to be in the highest income bracket.

About 84 percent of those who received MAiD lived in private homes before death, were more likely to be married, and less likely to be widowed. It was ascertained that three-quarters of MAiD recipients had been under the care of palliative care practitioners at the time they requested MAiD, according to the recently published study. Nothing in the data studied suggested that people from vulnerable groups -- the poor or geographically isolated -- were pressured into seeking MAiD.

Laying to rest the broad perception that people, because of lack of access to palliative care services, or reflecting their life condition as being poor or socially disconnected turn to MAiD. In fact the study revealed another facet of concern; whether the poor and vulnerable eligible for MAiD lack awareness that assisted death is an option for them. What remains unclear is whether relatively well-off people request MAiD more frequently than do people with fewer resources.

What the study revealed as well is that 6.6 percent of families reported having met with challenges to MAiD access. Using clinical and socio-economic data from the Office of the Chief Coroner for Ontario and the Institute for Clinical Evaluative Sciences, for 2,241 Ontario residents who had accessed MAiD, the researchers compared their characteristics to the total of 186,814 people who had died in the province between June 2015 (when MAid became legal) and October 2018.

Of those receiving MAiD in Ontario, approximately 64 percent suffered from cancer, 12 percent had neurodegenerative disease, 8.5 percent had cardiovascular disease, and 7.5 percent had respiratory disease. Patterns in other jurisdictions appear to demonstrate that those seeking assisted death tend to have higher incomes and higher levels of education, just as this study concluded. A Swiss study of assisted suicide published in the International Journal of Epidemiology in 2014 found the assisted suicide rate to be higher among urban and more educated people and those living in higher socio-economic neighbourhoods.

In Oregon and Washington states, where assisted suicide is legal, over 90 percent of those receiving assisted suicide accommodation had the benefit of, at minimum, high school diplomas. In Washington, 177 of 188; Oregon, 551 of 591, and 39 of 40 in a separate summary from the Seattle Cancer Center Alliance. For socially and economically marginalized people, the direct opposite appears to be the case.

The Canadian Medical Association Journal reported in 2018 on a survey of MAiD providers and interviews with 39 marginalized people living on the downtown east side of Vancouver. Subjects interviewed demonstrated "very low lvels of knowledge about palliative care, hospice and MAiD", stated Dr. Ellen Wiebe, clinical professor of family medicine at University of British Columbia. Most of those interviewed reported initially having no knowledge whatever of MAiD.

Almost all of the patients receiving MAiD reported both physical and psychological suffering; 99.5 percent and 96.4 percent respectively, according to the study. Leaving an unanswered question: how "existential distress" -- the patient's perception that their role in the world has changed and their very identity has been undermined or threatened by illness -- can be better addressed by the health care community.

"It's about what's happening to your body, and what's happening to  your world. It is deeply personal", stated Dr. Downar of the people who feel no comfort, having to wait for natural death. Dr. Downar believes the answers to some of the questions that have arisen are soon to arrive, since Health Canada mandated a long list of questions for patients to respond to before their lives are extinguished.

The responses, he believes, will provide significant insight into the type of suffering the medical system is not addressing effectively.