Stuart Chambers points out that expanding access to medical assistance in dying was always about relieving suffering rather than about targeting people with disabilities.
In the Truchon decision, Justice Christine Baudouin ruled that the “reasonably foreseeable” natural death requirement in Bill C-14, the federal government’s 2016 medical assistance in dying legislation, was unconstitutional. Without access to MAiD, those afflicted with incurable and debilitating chronic diseases faced two undesirable choices: suffer longer or die by suicide.
Critics of this decision contend that expanded eligibility for MAiD places a target on the backs of people in the disabled community. But Truchon’s detractors usually make the error of not focusing on actual patient suffering.
For instance, the authors of a recent article in The Conversation suggest that Bill C-7, the new law that widens MAiD’s eligibility requirements, sets Canada down an “extremely dangerous path.” One of the authors, Heidi L. Janz, Adjunct Professor of Disability Ethics at the University of Alberta, worries about “the effect that the expansion of MAID under Bill C-7 will have on kids and youth with disabilities.”
Writing for Maclean’s, Gabrielle Peters also cautions against expanding MAiD for those with non-terminal, debilitating conditions. Peters insists that additional exceptions would reinforce ableism, further contributing to Canada’s “history of oppression of disabled people.”
In Canadian Lawyer, Trudo Lemmens, Professor and Scholl Chair in Health Law and Policy at the University of Toronto, warns that Bill C-7 contains provisions that “violate their [people with disabilities] right to life and right to equal protection under the law.” The implication here is that extensions to MAiD will lead to the ableist presumption that “living with disability or chronic illness amounts to a life less worth living.”
And in Policy Options, Jonas-Sébastien Beaudry, assistant professor of law at McGill University, fears that Bill C-7 will not only engender a belief that the disabled are “better off dead,” but the new legislation will also provide them with “a legal path to end an existence that is often socially devalued.”
Regrettably, the voices of Jean Truchon and Nicole Gladu, the plaintiffs in the Quebec Superior Court case, are absent from these opinion pieces. Their stories are of primary importance because, in telling them, we are forced to recognize their physical suffering.
Although Jean Truchon was afflicted with spastic cerebral palsy, he still managed to lead a fulfilling life, that is, until 2012 when he was afflicted with severe spinal stenosis (narrowing of the spinal canal) as well as myelomalacia (spinal cord necrosis). No cure existed for these degenerative conditions, and no treatment was available to alleviate his symptoms.
As court transcripts indicated, Truchon experienced “significant physical pain in the arms and neck, with intense burning sensations and painful spasms. Treatments were attempted to relieve his suffering, but to no avail. The pain became enduring and constant.” Truchon was unwavering in his decision to seek MAiD, telling the court, “I can’t take it anymore. … My family and my friends know this and they respect my decision [to die].”
Nicole Gladu’s health was equally problematic. Afflicted with poliomyelitis, she was left with severe scoliosis caused by the gradual deformation of her spinal column. That said, she did not let her disability stop her from achieving her goals. In fact, the court described Gladu as “a very active, energetic, and cultured woman.” But, in 1992, Gladu stated that the “ghost of her childhood” re-emerged when she was diagnosed with degenerative muscular post-polio syndrome, a neurological disease characterized by “general fatigue, gradual or sudden muscular weakness, and mobility-reducing muscle pain.”
She then developed a serious case of osteoporosis, the effects of which could not be mitigated. As the court revealed, “Ms. Gladu is in constant pain. Her sciatic nerve, knee, back and hips cause her suffering. She is in a perpetual state of great discomfort and malaise…. The medication provides no relief.” Gladu informed the court that she was “worn out and at the end of her rope, a prisoner of her body and her disease,” adding that she could not go on existing like “a plant.”
Truchon was never about encouraging the disabled to die. Both plaintiffs enjoyed rich, independent lives for decades. Yet, once their circumstances changed for the worse, the central concern was the physical anguish they endured, not disability per se. More importantly, however, Truchon serves as a lesson in compassion. There are—and will continue to be—hard cases involving extreme suffering that cannot be resolved by maintaining a moral distinction between terminal and chronic illness.
In a society that embraces pluralism, our notion of what constitutes a good death must also include individuals whose situations fall outside the eligibility criteria originally stipulated in Bill C-14. Those experiencing intolerable chronic suffering, like Truchon and Gladu, have issued a call of conscience. Bill C-7 is an ethical way to answer their call.
Stuart Chambers teaches in the Interdisciplinary School of Health Sciences at the University of Ottawa. @StuartChambers9