By Tom Koch, May 3, 2023
It has been 30 years since Sue Rodriguez became the face and querulous voice of a radical movement. In a videotaped address to Parliament on November 24, 1992, the woman with amyotrophic lateral sclerosis (ALS) asked for permission to receive medical termination at the time of her choosing. “If I cannot give consent to my own death,” she asked, “whose body is this? Who owns my life?” Her plea went not just to Parliament but to the Supreme Court of Canada that, in 1993, ruled against her in a close, 5–4 decision.
Nobody answered her questions, not really. And more importantly, no one asked: Are these the right questions?
In 2015, long after she died, the Supreme Court of Canada seemed to respond in Carter v Canada, a case brought by, with others, another person with ALS, Betty Carter. It created a new right under the Canadian Charter of Rights and Freedoms mandating “medical assistance in dying” for those suffering in the painful end stages of a progressive, terminal disease. That went well beyond the Supreme Court’s decriminalization of abortion in the famous 1988 Morgentaler decision, which held that prohibitions infringed on a woman’s rights under the Canadian Charter of Rights and Freedoms guaranteeing “life, liberty, and the security of the person.” More recently, the Courts have expanded the new right to include an ever-widening class of non-terminal patients. The result has been an unprecedented increase in assisted deaths with little attention to the alternative: the potential of an assisted, supported life.
Rodriguez and her clinical descendants already had the right to consent to or refuse treatments recommended by medical personnel. They did not need a court judgment to refuse life sustaining medicine, nutrition and hydration. A right to medical termination is not about individual consent, however, but about us: our approval and our obligations. It requires we enjoin medical personnel to actively secure and then administer heart-stopping medications causing cardio-pulmonary arrest. As a society, we are required to act upon a request for premature death when a person meeting a now lax clinical standard demands it. What is not required is that we ask why the person makes that choice and if, with other actions by us, their concerns might be better addressed.
The right to die
The approval for what we call Medical Assistance in Dying (MAiD) upended two millennia of medical and social ethics defining life as an essential good to be nurtured and protected. In formulating a “right” not to life but instead its early ending, life became a contingent value dependent on the individual’s state of mind. In this way, “quality of life” became a determining moral standard. If life seemed somehow diminished and thus insupportable, an early ending could be demanded. In the same vein, “suffering” was redefined not as a state of untreatable, physical, end-stage discomfort but as an “existential crisis” in which the lived life seemed insufficient, or might become so, for a person with a chronic and potentially (but not necessarily immediately) limiting condition.
The transition to life as a value, a good based upon a person’s sense of reality and was in no small part the triumph of a new moral philosophy introduced first in the 1970s: Bioethics. The injunction of rights to be accessed through the provincial health agencies enshrined in law what Hastings Center co-founder Daniel Callahan described, in 1993 as a long campaign to “push religion aside,” and dethrone physicians as primary decision-makers. Employing the language of rights, the goal was to enshrine bioethicists as the moral authority in clinical and related social ethics. As decision makers, Callahan and others promoted a system of “regulatory ethics,” with individual choice as the dominant good. But that choice was from the start limited by bureaucracies and scarcities of resources in a system.
The new ethics promised to prevent a person’s “irremediable suffering” through the provision of a premature death upon a person’s request as the sole, logical response to someone’s not simply physical but also “existential” discomfort. But bioethicists promoting medical termination, and the courts that enshrined it, never asked if that suffering could and perhaps should first be otherwise treated. If we seek to protect and, indeed, maximize individual choice in the face of chronic illness, wouldn’t “security of life, liberty and security of person” require an equal possibility of living with dignity despite the challenges of an illness rather than maxing dying as the reflexive option?
In a 2021 Health Canada report on those seeking MAiD, over 80 percent identified a “loss of ability to perform activities of daily living” as something they did not think they could endure. This had been Rodriguez’s fear, and later, that of Betty Carter in her successful Supreme Court challenge. And without a doubt, “One of the profound levelers of becoming a patient is the loss of control you experience. With a disruptive injury, the familiar landscape of your life warps in unsettling ways” (Stern 2023). But because one cannot do today what one did yesterday does not mean life itself is at an end. A meaningful life within the limits imposed by accident and injury requires resources that bioethicists always assumed would be in short supply. With life as a contingent good in the context of scarcity the needs of the fragile would always be at risk.
From the debate in the 1960s over a US scarcity of dialysis beds in Seattle, WA, through the Belmont Report in the 1980s to proposed triage protocols during the COVID-19 pandemic in 2020, bioethicists assumed that lack of resources would require some, typically the fragile, be sacrificed so other healthier persons might be saved. What they did not ask, and the Courts did not question, was whether scarcity was absolute or with attention could be reduced. And, of course, it was: from the dialysis debate to Covid-19 scarcity bowed to the insistence that care resources be provided.
With clinical, economic and social support, even the most restricted can find a new and meaningful life. In his 1998 novel The Diving Bell and the Butterfly, the French editor and journalist Jean-Dominique Bauby described his journey from deathly despair to engaged life in a locked-in state following a massive stroke. Others similarly limited who choose continuation include, in a partial list, most famously, the physicist Stephen Hawking who lived more than three decades with ALS. In Ontario, think the Honourable Mr. Justice Sam Filer, another ALS patient, who returned to work despite paralysis and the need for constant ventilator support.
What these and other, similar histories reflect is that MAiD is not a simple promise of autonomy but a too easy answer to hard questions. The right to a premature ending should first include a predicate right to the necessities of life for those with limiting conditions. Without a focus on dignified lives rather than a mandate for quickly facilitated deaths, there is no consideration of, or requirement that we provide the clinical, economic or social resources that can make a “disabled life” comfortably livable. And so “scarcity” and cost efficiencies become the excuse for not assuring necessary services for the fragile.
Consider the case of Roger Foley who wrote, from his hospital bed in London Ontario, that “MAiD is being presented to patients as a preferred treatment option rather than the very last resort once all other avenues have been exhausted.” Injuries resulting in multiple hospital admissions, he charged, resulted from inexpert home care provided by ill-trained subcontractors working for the provincial health care system. For him, “intolerable suffering” was caused not by his neurological condition, cerebral ataxia, but a provincial health system that refused to provide the expert home care he required.
Since his last admission Foley has refused to leave the hospital until given the right to caregivers who would not injure him. In response, the hospital is now charging him $1000 a day for his continued unwelcome residence. As his court case makes its slow, slow way through the courts, he has amassed, he says, over $1 million in hospital charges. During his stay, he was twice asked if perhaps he might prefer an early death. He recorded those suggestions and his insistence that what he wanted was the ability to live as long and safely as possible at home and with skilled support.
Less dramatically, a 2021 Health Canada study of those seeking MAiD found that over 50 percent of respondents reported inadequate pain control as one reason for their request. It was not that their pain was uncontrollable but that expert clinical relief was unavailable. A 2018 study by the Canadian Institute for Health Information (CIHI) documented the lack of pain and palliative support for Canadian patients. In 2015 the Canadian Society of Palliative Care Physicians found that only 15 percent of Canadians with palliative needs received expert care. The question becomes is the “existential suffering” of those seeking MAiD an inevitable result of their condition or of our failure to assure the necessities of a functioning, meaningful life.
An early death may well seem preferable to a life limited by untreated but not untreatable pain without the resources needed to pursue lifelong interests. We know that almost everyone who has been paralysed in an accident or a stroke will want to die at first. But we also know that after two years of rehabilitation and social assistance, more than 60 percent will find a new if different way of life worth living. With MAiD it becomes easy to ignore the need to provide the necessities of a restricted, pain-free life while promoting, as hospital personnel did in Mr. Foley’s case, a rapid and cost-efficient ending.
Whose body is this? Who owns my life?
It is common, today, when someone asks for MAiD to shrug and say, “well, it’s their choice.” But it is not a real choice if alternatives are unavailable. As a society we have assured the right to a premature death without addressing, in most cases, the reasons for it. Nor have we asked if those reasons result from our failure to assure the resources necessary for a relatively pain-free if different way of being.
None of us “own” our lives. We live in liege to a complex of associations that determine its quality. As family members we support and are supported (or not) by others; as Canadians we enable (or disable) the priorities of our governments. A life is not a simple thing, a private good declared in a vacuum. It is always a work-in-progress lived within a family and a community that does, or does not, support us across the life span.
Sue Rodriguez’s asked the wrong questions. Her plaint was not about consent, or bodily control but a demand we agree and then provide the resources for her ending and that of those who came after her. An inalienable right to premature death is only a half-right when, as Roger Foley put it, “Greater value is placed on access to MAiD than access to alternatives that could alleviate a patients intolerable suffering.” Can we assure the provision not simply of death at a time of one’s choosing but first life with necessary support? Is what she asked in accord with our greater values; is life a primary good and ‘dignity’ a given for all, irrespective of their cognitive, physical, or sensory challenges? The answer so far has been we choose to ignore our responsibilities and so, too often, there is no fulsome choice. As a country we took the easy route with MAiD and continue upon it today.
Tom Koch is a practicing medical ethicist, geographer and historian. A professor (adj.) at the University of British Columbia, he is the author of more than 200 academic and popular articles. His most recent book, was Ethics in Everyday Places: Mapping Moral Stress, Distress, and Injury (MIT Press, 2017).