Prof Harvey Max Chochinov, OC OM MD PhD FRCP(C), is Canada Research Chair in Palliative Care; Director, Manitoba Palliative Care Research Unit; Chair, Canadian Virtual Hospice; and Distinguished Professor in the Department of Psychiatry, University of Manitoba
Prof Balfour M. Mount, OC QC MD FRCP(C), is Eric M. Flanders Professor Emeritus of Palliative Medicine, McGill University
On October 15th, the Supreme Court of Canada will hear an appeal by the BC Civil Liberties Association that could grant terminally ill Canadians the right to assisted suicide. Given that impending ruling, the recent passing of Bill 52 in Quebec (legalizing euthanasia or what is euphemistically being called Medical Aid in Dying [MAD]) and rumblings from parliament of yet another private members bill on assisted suicide, Canada is clearly at a crossroads on this issue. The Court faces a daunting task. Where rhetoric ends, the war of what the data say begins; with each side invoking elements of empirical evidence that happen to support their particular argument. Add fear of death, dread of the process of dying—and our societal aversion to discuss these issues—and one begins to appreciate what the court is up against.
First and foremost, the Court must consider how people in this country die and whether their decision will move us toward improving care for the terminally ill. Dying in Canada can be a scary prospect. According to a parliamentary report from 2000, the vast majority of Canadians of all ages do not have access to comprehensive, quality palliative care. Most will have little choice but to die in tertiary care settings due to inadequate community resources to support a home death. Furthermore, there are no national standards pertaining to pain control, symptom alleviation, psychosocial care and spiritual support, dictating what palliative care these facilities must provide. For First Nations, Metis or Inuit, the chance of receiving culturally sensitive palliative care is poor. And the further you reside from an urban centre, the less likely it is that you will receive care that will be fully attentive to your end-of-life care needs.
The court must consider who they would be empowering to carry out physician hastened dying. Currently, at licensure, the average Canadian doctor has received substantively less training in pain management than their counterparts in veterinary medicine. Most physicians have knowledge deficiencies that substantially impair their ability to manage cancer pain and are poorly equipped to address the complex issues that often underpin requests for physician hastened death. Like their patients, doctors do not like to feel helpless; little wonder, therefore, that those who have the least contact with terminally ill patients and know the least about symptom management are most in favour of assisted suicide, while those with more experience have tended to oppose it.
Autonomy has proven to be a risky argument for legislative change. With autonomy in the driver’s seat, no destination seems beyond consideration: be it death hastening for infants and children, people with dementia or chronic conditions, those who have not given explicit consent, the mentally ill and most recently, inmates who would prefer death to incarceration. Permissive legislation will also heighten feelings of vulnerability amongst those with disabilities, those feeling a burden to loved ones and those who society perceives as unproductive. It would also appear that autonomy is intoxicating; the more people have, the more it becomes a cultural norm and a perceived entitlement. Citizen groups in The Netherlands and Belgium have been advocating for the availability of death hastening measures for people older than seventy years of age who are expressing ‘tiredness of life’.
A scrupulous reading of the literature is essential as the representation of findings can be misleading and falsely reassuring. Take studies suggesting that families of patients who avail themselves of death hastening do not experience negative psychological consequences. Failure to show harm is not the same thing as proving lack of harm. For instance, a Dutch study documented a lower incidence of complicated grief for bereaved family and friends of individuals who died by euthanasia compared to a control group, whose loved ones died naturally. However, relative to the control group, a lesser percentage of respondents in the euthanasia group were partners, children or siblings of the patients. In other words, the result of this study could simply mean that more distant acquaintances grieve less intensely than close relatives. To date, there are no studies examining the bereavement experiences of family members that were not informed of their loved ones decision to pursue assisted dying. In Oregon, about ten percent of patients refuse to have their family brought into the discussion and in another six percent of instances, the physician will not know if families are aware of the request. Quebec's Bill 52 stipulates that patients can refuse to have their families consulted.
The Court may wonder if palliative care can include physician-hastened death. They must understand that palliative care demands consistent, vigilant monitoring of how the patient is feeling, accompanied by individually optimized responses, designed to assuage physical, psychosocial and spiritual distress. Palliative care is not a singular event, but rather a process of caring applied over time. As such, short of asking dying patients and families to dislocate themselves from communities that lack appropriate resources, most Canadians will simply have to make do—or, if the law changes, take cold comfort in knowing they can access death-hastening alternatives.
To be clear, palliative care is not a panacea that can eliminate every instance and every facet of end-of life suffering. However, the physician-patient relationship is complex and profound. Preserving dignity for patients at the end of life is comprised of a steadfast commitment to non-abandonment and a tone of care marked by respect, kindness; and an unwavering affirmation of patient worth. Little wonder that terminally ill patients who feel appreciated are less likely to consider euthanasia or assisted suicide. When this dignity conserving approach to palliative care was first published, the former head of the Hemlock Society conceded that “if most individuals with a terminal illness were treated this way, the incentive to end their lives would be greatly reduced.”
There is much for the Supreme Court of Canada to consider. The country will anxiously await its verdict.