Help to live, or help to die?
Reflections from “End Of Life, Equality and Disability: A National Forum on Medical Assistance in Dying”
By Rachel Egberts*
On January 30, The Council of Canadians with Disabilities and the Canadian Association for Community Living hosted the “End Of Life, Equality and Disability: A National Forum on Medical Assistance in Dying” at the Shaw Centre in Ottawa. The forum was organized to draw attention to the impact that expanding Medical Assistance in Dying (MAiD) will have on Canadians with disabilities. The expansion of MAiD is currently the subject of a new proposed law, in response to the ruling of the Quebec Superior Court in Truchon v The Attorney General of Canada. The decision held the requirement that death must be “reasonably foreseeable” was unconstitutional. The Canadian Government has chosen not to appeal this decision.
The message at the forum was clear. The requirement for a “foreseeable death” must be maintained. The speakers explained that, for Canadians with disabilities, the primary threat to their autonomy is often not about having a right to end their life, but rather, a choice to live it. Much more work needs to be done to improve access to assisted living.
The forum opened with a video of Audrey King, a disability advocate who has faced life-long stigmatization. She was paralysed from polio as a young girl. Her doctors only approved a surgery that would allow her to have some mobility in her thumb after it was determined that she was “bright” and had graduated from high school. She went to university but was placed on probation for her first year because they were not sure she could manage. She lived on her own and hired the help she needed and has overcome many challenges to live a full life of flourishing. Still, she continues to face social barriers. Recently, she contracted pneumonia, and her attendant overheard two nurses wondering why they were keeping her alive and whether “she had just had enough”. Thankfully, she had those who cared about her who were able to drown the comments out.
Audrey King remarked that it was dangerous to be in a hospital alone. This is the challenging climate that many Canadians with disabilities already face, and there is a deep concern that the expansion of MAiD will only make it worse. MAiD was introduced as an “alternative” to a painful death. However, to remove the requirement of a reasonably foreseeable death and allow it for anyone with a grievous and irremediable medical condition would be to present it as an alternative for a painful life, as explained by the first speaker, Professor Catherine Frazee (Professor Emeritus, Ryerson University Disability Studies). Prof. Frazee explained that MAiD is not a “victory for human autonomy” desired by the disability community; rather true autonomy would allow Canadians with disabilities the freedom to choose where and how to live, not whether to live at all. She said that there is only one message that this expansion of MAiD sends to those with illness, disease, and disability and that is “we are not needed” (you can watch Prof. Frazee’s powerful presentation here).
Many of the other speakers gave context to the difficulties that Canadians with disabilities face in just living. Kory Earle of People First Canada spoke about Canadians with intellectual disabilities and how they experience high rates of violence, abuse, unemployment, and poverty. He highlighted many supports that Canadians with intellectual disabilities need, including housing and employment, but stressed that the ability to end their lives is not one of them. The reinvention of MAiD suggests that suffering is inherent to the disability. Speakers argued that disability alone should not be enough to qualify for MAiD. They explained that, although it is often assumed that suffering is inherent to a disability, much can actually be the result of external factors, such as how people with disabilities are treated.
A panel of legal scholars also discussed the constitutional implications of MAiD expansion for people with disabilities (lawyer Nichola Rouleau, Professor Trudo Lemmens of the University of Toronto, and Professor Laverne Jacobs of the University of Windsor). They explained that to remove the reasonably foreseeable death requirement would be to discriminate against those who are dealing with illness, disease, or disability by treating their suffering in life differently from everyone else’s – namely, by declaring that they should be able to end their lives, with state support. This is an issue of equality: by not restricting MAiD to the end-of-life dying process (which everyone faces, regardless of disability), the law would treat those who lead consistently painful lives differently than those who do not.
Professor Heidi Janz (John Dessetor Health Ethics Centre, University of Alberta) gave some context to how these challenges manifest themselves in today’s culture. She presented statistics on how Canadians with disabilities are prematurely placed into nursing homes because there are no other alternatives to get the help that they need. She reviewed several cases of MAiD where Canadians with disabilities pursued MAiD after they failed to get the help they needed in assisted living. A main theme emerged from the presentations: with the expansion of MAiD looming, Canada is on the verge of legislating assisted death in lieu of seeking assisted life. In the course of her remarks, Prof. Janz highlighted the importance of running this marathon and fighting for protection of Canadians with disabilities. As she simply said, “our lives depend on it.”
The message was clear. To remove the requirement for death to be reasonably foreseeable would be to address a problem that does not exist for those in the disability community and increase vulnerability because of the lack of support they have in seeking to live.
One can only hope that those in attendance at the forum, including two members of Cabinet, truly heard what was being said: that removing the requirement of a reasonably foreseeable death is creating more problems than it is solving. Canadians with disabilities need help to live, not to die.
*Rachel Egberts is a second-year law student at the University of Ottawa. Her primary interests are in criminal and constitutional law. She serves on the executive of the UOttawa CLF Student Chapter and enjoys reading non-law related fiction in the spare time which she sometimes convinces herself she has.