Harvey Max Chochinov is a professor of psychiatry and Canada Research Chair in Palliative Care at the University of Manitoba. He was chair of the External Panel on Options for a Legislative Response to Carter v. Canada.
Autonomy, it would seem, is an intoxicant. The more we have, the more we want. In introducing its legislation on physician-assisted dying, the federal government has rejected several key recommendations made by the parliamentary committee on medical assistance in dying. In the days ahead, as Canadians weigh in on Bill C-14, some will say the legislation has gone far enough. Those craving more autonomy, however, will insist it must go further.
The proposed legislation does not include the committee's recommendation to allow death hastening by way of advance directives for people with dementia. Jurisdictions that have attempted to include an advance-directive provision for dementia have found it completely untenable. Doctors almost always find it inconceivable to comply with such requests, given that the patient with dementia is a psychologically different person than the one who signed the advance directive. Doctors are not able to determine the patient's current wishes, or feel the patient is not suffering or no longer wants to die. While family members may support forgoing life-prolonging treatment, most ask that the euthanasia directive not be followed because of uncertainty about the person's current wishes, or they may not be ready for the person to die, or may not sense that the person is suffering.
Nor does the legislation abide by the committee's recommendation to include patients with psychiatric illness. Based on lessons learned from jurisdictions with death-hastening experience, the government landed on the right side of this tragically difficult issue.
In Oregon, the lawyers, psychiatrists and other physicians I spoke with – many, ardent supporters of that state's Death With Dignity Act – found the idea of physician-assisted death for non-terminally ill psychiatric patients to be utterly inconceivable. Recent data from the Netherlands indicates that doctor-assisted death on psychiatric grounds is fraught with difficulty. A Dutch study of people who received euthanasia or assisted suicide for psychiatric reasons found that about 70 per cent were women, with issues including depression, psychosis, post-traumatic stress disorder, anxiety, substance abuse, various forms of cognitive impairment such as intellectual disability or early dementia, eating disorders, prolonged grief and autism. Most had personality disorders and were described as socially isolated and lonely. In one quarter of cases, despite differences of opinion between physicians, death hastening proceeded.
Mental illness often leads people to see themselves as worthless, to believe their situation is hopeless, and to perceive that their lives have little value. Little wonder a death-hastening response is so deeply problematic.
The government also rejected the committee's suggestion that the law apply to mature minors, saying that the issue requires further study. The independent body that is to study this would be well advised to speak with people caring for children with life-threatening and life-limiting conditions, including pediatric specialists (oncologists, palliative care clinicians), child psychologists, development specialists, and of course, members of the families of critically ill children. In discussing the issue of minors, these voices have not as yet been heard.
Bill C-14 bears some of the hallmarks of Quebec's euthanasia legislation, with eligibility including that a natural death is "reasonably foreseeable" and that the person be in an advanced state of irreversible decline in capabilities. Just what that means and how it will play out remains to be seen.
One would hope that every patient whose anxiety expresses itself as a wish to die would have access to palliative care expertise, including a detailed evaluation of the physical, psychosocial, existential and spiritual drivers behind their request. Given that the government is committed to reviewing this legislation in five years, it is critical that data of this kind be collected to inform future policy amendments. While autonomy can be intoxicating, clear and sober thinking must prevail as the country moves toward a made-in-Canada approach.