Caregivers favour assisted dying, study shows
91% of respondents also support option for dementia sufferers in distress
In the first study of its kind in Canada, an overwhelming majority of Quebec caregivers say they’re in favour of extending medical assistance in dying to those afflicted with Alzheimer’s disease or dementia.
The survey by Université de Sherbrooke epidemiologist Gina Bravo found 91 per cent of respondents support the idea of assisted dying for individuals suffering from dementia who are at the terminal state of their illness, showing signs of distress and who have an advance written directive. What’s more, 72 per cent said they were for assisted dying even for Alzheimer’s patients who did not sign a written directive before their illness.
“We’re not here to vote for or against” the issue, Bravo told reporters at a news conference on Thursday to mark World Alzheimer’s Day. “We’re here to contribute to the debate. We think it’s important that this debate be serene and constructive.”
Under Quebec’s “end-of-life care” act, which came into effect on Dec. 10, 2015, a patient seeking medical assistance in dying must make the request “in a free and informed manner.” That legal requirement excludes people with dementia.
Although Law 52 does allow for advance medical directives like the “do-not-resuscitate” order in the event a patient becomes incapable of giving consent during palliative care, the legislation specifically excludes assisted dying from such directives.
In March, Health Minister Gaétan Barrette announced that a parliamentary commission will consider the merits of allowing patients with dementia to give “advanced consent” to medically assisted death. Barrette made the announcement a month after the alleged murder of an ailing nursing-home patient by her spouse.
Should there be any changes to Quebec’s assisted-dying law, Barrette said that process would begin in 2018.
Bravo and her team surveyed a total of 302 caregivers. A dozen Alzheimer’s chapters of the Fédération Québécoise des sociétés Alzheimer participated in collecting the survey data.
Bravo added that “the point of view of caregivers must be taken into account, as well as those of other concerned groups.” But she warned “the difficulties of applying such a law cannot be ignored.”
Jean-François Lamarche, president of the Alzheimer’s federation, said his group will remain neutral on the question of whether to expand assisted dying to people with dementia.
“It’s not our role to take a position on that,” he explained. “Our role is to support people with the disease and their caregivers until the end, whatever the legal framework we decide to have in Quebec.”
At present, 141,000 people in Quebec are struggling with Alzheimer’s or another neuro-degenerative disease. That figure is projected to soar to 250,000 by 2025.
“It’s really a tsunami and we have to be prepared for it,” Lamarche added.
Medical lawyer Jean-Pierre Ménard attended Thursday’s news conference, warning of a number of potential problems in granting assisted dying to those with dementia.
“We have the utmost respect for caregivers of persons with Alzheimer’s and other forms of dementia, many of whom devote themselves to their relative until they are on the verge of complete exhaustion,” he said. “However, we must avoid any opening or any softening of conditions that would end up making medical aid in dying accessible to people with dementia.”
But 21-year-old Sabrina Lacoste, who had taken care of her late father who suffered from Alzheimer’s, argued the option of assisted dying would have spared her father unbearable suffering and a host of indignities.