Roger Foley wants a choice. Foley has cerebellar ataxia, a degenerative neurological condition that significantly limits the mobility of his arms and legs and makes it impossible for him to live independently without caregiver support. But — Foley alleges — his government assigned agency home care workers neglected and abused him. Over a four-day period, they gave him rotten food, denied him access to his medicine and banged his debilitated body into the walls. He had to be immediately admitted to the hospital where he now resides. Though his disease limits his life expectancy, he had hoped to organize a self-directed care team sufficient for him to return home. But the government-contracted nonprofit corporation responsible for his home care argued that his particular disability rendered him ineligible for the funding necessary to do so. The hospital, meanwhile, threatened to forcibly discharge him back home under the care of agency staff that both Foley and his treating physicians knew could not meet his needs. When he refused this option, a hospital staff member offered him two choices: either pay $1,800 a day to remain in the facility or avail himself of what Foley saw as an attack on his life.  

That threat is known as “medical aid in dying” (MAiD), in which a doctor ends the life of a consenting patient whose medical condition is considered “grievous and irremediable” and known to cause a “reasonably foreseeable” death. It’s a practice that can provide relief for those who seem to have no options other than a painful wait for the inevitable. But while MAiD is legal throughout Canada, where Foley lives, it is no substitute for the care that could make his life livable, care that the Canadian government is obliged by law to give but has refused to provide him, even after he filed a lawsuit in 2018 to compel it to do so. The alternate offer, of a medically assisted death, shows how well-meaning policies can excuse inadequate care.  

While Foley awaits a verdict, Canada’s Parliament is debating a law that would dramatically expand MAiD. Bill C-7 would remove the requirement limiting assisted death to those expected to die in the “reasonably foreseeable” future, thereby extending it to disabled people. For its proponents, this is an anti-discrimination measure. MAiD is meant to prevent “irremediable” suffering caused by medical conditions. After all, disabled people can experience as much suffering as dying people, perhaps more. To deny them access seems arbitrary, even unconstitutional. 

Such thinking treats disabled people’s suffering as primarily medical, but as the experiences of patients like Foley show, sometimes that suffering can be caused by the denial of care. By extending the scope of MAiD, the Canadian government would only make it easier to avoid the hard but necessary work of meeting the needs of disabled people like Foley: If there’s a simple solution to their dilemmas, why worry about the costlier and more complex alternatives?

Medically assisted death can be justified in the proper circumstances. It’s entirely possible to accommodate the “right to die” of some, especially those facing “reasonably foreseeable” deaths, while also recognizing that many disabled people are unjustly starved of the resources — such as personal assistance services, housing, nutrition, health care, financial support and access to community — that give life meaning. Bill C-7 threatens to destroy this compromise in a country where disabled people often fall into the trap Foley now faces. 

In April 2019, the United Nations denounced Canada for “significant shortcomings” in fulfilling its obligations under the Convention on the Rights of Persons With Disabilities (CRPD). It said the country’s lack of community-based options “gives no other alternatives to persons with disabilities than living in institutions and other residential settings.” Canada, the U.N. special rapporteur urged, “must break with these segregated approaches.”

At least one person in such an institution recently availed himself of MAiD. Chris Gladders, a 35-year-old man with Fabry disease, a rare genetic condition, died this way in a retirement home last month. In a recent article, Gladders’s brother, Shawn, catalogued the conditions that Chris was subjected to before his death: bedsheets that had been unchanged for weeks, urine and feces on the floor, a staff unresponsive to his calls for help. While Chris’s serious medical condition undeniably contributed, his brother believes that his mistreatment in the home heavily influenced his decision to die.

It is certainly understandable, given his circumstances in the home, that Chris Gladders might have wanted his life to end. It is not understandable that the government would end it for him instead of allaying those conditions. It should have made sure that his sheets were changed, his floor cleaned up cleaned up and his calls for help answered. It should have given him the opportunity, which he deserved, of a life that was livable.  

Gladders’s death was hardly a victory over the “discrimination” sick people face. Yet such reasoning underpins the September 2019 ruling that helped usher in Bill C-7. In Truchon and Gladu v. Canada, Justice Christine Baudouin heard the claims of two disabled people that the “reasonably foreseeable” requirement was discriminatory. One claimant was in an institution. The other sought a medically assisted death because she feared “above all” that she might perish in one. Baudouin ultimately agreed with their claims of discrimination, arguing that paternalism — the view that disabled people cannot know their own interests — underlies the objection to offering them MAiD.

Yet there is paternalism, too, in the way Canada denies many of its disabled citizens any option other than life in an institution. Disabled Canadians lose control over their lives when they lack adequate support to live independently in the community if that is their preference. Article 19 of the CRPD, which Canada is bound to comply with, stipulates that member states must ensure that disabled people have the right to “live in the community, with choices equal to others.” Fulfilling this obligation requires providing them with “a range of in-home, residential and other community support services, including personal assistance.” Through its refusal to provide such services to Foley and many others, Canada is failing both its disabled citizens and its obligations under international law. Bill C-7 doesn’t acknowledge, much less solve, this problem. While it requires that those seeking a medically assisted death be informed of available “disability support services,” it does not require that these services comply with the international disability rights convention.

A mandate for better care would require that the state view support not as a form of social assistance but rather as a human right to which disabled Canadians were fundamentally entitled; such a right would not be contingent on the resources of the highly bureaucratic and often underfunded nonprofits currently controlling the lives of many of Canada’s disabled citizens. It would compel the government to give them the direct support — including caregiving, housing and income — necessary to determine the course of their lives. In the meantime, allowing someone to “choose” death while you violate their human rights does not indicate respect for their decision-making. 

This month, U.N. experts argued that the proposed law violates the CRPD, citing Canada’s “two-tiered” system, in which disability status becomes the justification for providing either “suicide prevention” or “suicide assistance.” In other words, the “relative lack of access to palliative care and social support” is so severe that “free choice may not exist.” And the pandemic has worsened this problem. Approximately 80 percent of Canadian deaths from the coronavirus have occurred in the institutions that the United Nations special rapporteur condemned in April 2019. Had Ottawa heeded her denunciation, the human tragedy would have been much smaller.

Medically assisted death has been legal in Canada since 2016. If the bill passes, the country’s permissive approach will equal only those of Belgium and the Netherlands. But, as University of Toronto law professor Trudo Lemmens has noted, both of those countries spend far more money relative to Canada on palliative care and social support. This makes it much less likely that those seeking assisted death might do so because of a deprivation of basic services and care.

Even so, those two countries provide many reasons for caution. This month, the Journal of Medicine & Philosophy found that in the 18 years since Belgium permitted this sort of euthanasia, the laws and regulations meant to protect patients from abuse “often fail to operate as such.” Much like in the Netherlands, the eligibility criteria had steadily expanded to the point where more and more people pursued it not for medical reasons but simply for “tiredness of life.”

Legalizing assisted death for disabled people only fortifies the underlying problem: Canada has long mistreated its disabled citizens. This bill is a workaround for that problem, not a solution.

Twitter: @haroldbraswell