“Ultimately, it was not a genetic disease that took me out, it was a system,” Kovacs, who suffered from ALS (amyotrophic lateral sclerosis), wrote in the obituary she left for friends and family. “There is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive. I could have had more time if I had more help.”
A friend of Kovacs told the CBC Kovacs withheld from MAiD assessors that she was driven to seek a medicalized death by lack of adequate home care, knowing she would be denied if she spoke about it.
Kovac’s case is not unique, said Toujours Vivant-Not Dead Yet director Amy Hasbrouck. Her database of tales of MAiD gone wrong stretches to 55 names of people either killed in the official Medical Assistance in Dying system under questionable circumstances or who committed suicide in frustration with bureaucracy that could not or would not provide adequate supports or home care.
Access to home-based personal supports has been a major struggle for disabled people since long before MAiD became legal in 2016. As Canada debated the wisdom of legalized mercy killing, disability rights activists, including Hasbrouck and her Not Dead Yet network, argued that such a system would threaten disabled people by encouraging them to choose a state-sanctioned, medically certain death.
“At this point we’re sort of sitting here saying, ‘I told you so, I told you so, I told you so.’ But nobody wants to hear from us,” Hasbrouck said.
The database was assembled from media reports as “none of this information is available through government sources,” Hasbrouck said.
Health Canada denies that anybody is receiving MAiD because they can’t access disability supports or quality palliative care.
“In the course of advancing a request for MAiD, a person may indicate the absence or insufficiency of social support. However, there is no evidence that a person would be assessed as eligible for MAiD by two independent practitioners if the assessors had reason to believe that the person’s grievous and irremediable medical condition and associated suffering caused by that condition could be relieved on a sustained basis by access to reasonable and available treatment and social services,” Health Canada spokesperson Natalie Mohamed told The Catholic Register in an email.
“Yeah, well that’s (BS),” Hasbrouck responded. “It was (BS) seven years ago and it’s (BS) now. Every one of these cases (in the database) points out how what they’re saying is not true.”
The database includes Sean Tagert, a 41-year-old B.C. man with ALS who tried and failed to get the 24-hour at-home support he needed to function. Thirty-five-year-old father Chris “Birdie” Gladders from Hamilton, Ont., is on the list. He suffered from Fabry’s disease, which cancels the body’s ability to break down a specific type of fatty acid. During COVID, he ended up at a retirement home where he was left alone in his room with bedding unchanged for weeks and no ability to get to the toilet on his own. He qualified for MAiD last year.
Since February, when MAiD became legal by reason of disability with no imminent prospect of death, Hasbrouck’s fears have only deepened.
According to the Third Annual Report on Medical Assistance in Dying in Canada, MAiD accounted for 3.3 per cent of all Canadian deaths in 2021. Year after year MAiD deaths have inched up. If MAiD was counted as a cause of death by Statistics Canada, it would have been the 10th leading cause of death in 2018. In 2019 it was the ninth leading cause of death. Then in 2020, despite the onset of COVID, it was the seventh leading cause of death.
“It (MAiD) is actually just a way of depressurizing the problems with social services,” Hasbrouck said.
Public exposure of the cases where MAiD has been administered when people’s greatest challenge was not their disease but their access to health and social supports is critical, said Hasbrouck.
“We knew that this was going to happen and here it is happening. ... We need to backpedal on this idea that killing people is a good idea.”