Autonomy, it would seem, is an intoxicant. The more we have, the more we want. In tabling its draft legislation on physician-hastened death, the Federal Government has rejected several key recommendations made by the Parliamentary Committee on Medical Assistance In Dying (MAID). In the days ahead, as Canadians weigh in on Bill C-14, some will say it has gone far enough. Those craving more autonomy, however, will insist it must go further.
The draft legislation does not include the Parliamentary Committee’s recommendation to allow death hastening by way of advance directives for people with dementia. Those jurisdictions that have attempted to include an advance directive provision for dementia have found it completely untenable. Physicians almost always find it ‘inconceivable’ to comply with these requests, given the patient with dementia is a psychologically different person than the one who signed the advance directive.
Physicians are not able to determine the patient’s current wishes, feel the patient is not suffering or no longer wants to die. While family members support forgoing life-prolonging treatment, most ask the euthanasia directive not be followed because of uncertainty about the person’s current wishes, not being ready for the person to die or not sensing that the person is suffering.
The draft legislation did not abide the Parliamentary Committee’s recommendation to include patients with psychiatric illness. Based on lessons 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 the Death With Dignity Act – found the idea of physician-hastened death for non-terminally ill psychiatric patients utterly inconceivable.
Recent data from Holland indicates that physician-hastened death on psychiatric grounds is fraught with difficulty. A study of people who received euthanasia or assisted suicide for psychiatric reasons reported that the majority 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 instances, despite differences of opinion between physicians, death hastening proceeded. In about one third of cases initially refused, most were carried out by new physicians willing to comply. 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 Parliamentary Committee’s suggestion that the law include mature minors. They suggested that this issue requires further study. They 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, family members 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 legislation, with eligibility including a natural death being reasonably foreseeable and the patient being 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 angst expresses itself as a wish to die would have access to palliative care expertise, including a thorough and detailed evaluation of the physical, psychosocial, existential and spiritual drivers motiving their request for hastened death.
Since the government is committed to reviewing this legislation in five years, it is critical that data of this kind be collected, prospectively, in order to inform future policy amendments. While autonomy can be intoxicating, clear and sober thinking must prevail as we move towards a MAID in Canada approach.
Dr. Harvey Max Chochinov is a distinguished professor of psychiatry at the University of Manitoba. He was chairman of the federal government’s external panel for options to Carter v. Canada and is an adviser to the ]Vulnerable Persons Standard.