The principle for respect for autonomy acknowledges the right of a patient to have control over his or her own life, including decisions about how his/her life should end. Thus a competent person should be able to refuse life saving treatment in both current situations and future foreseeable situations. Should respect for autonomy mean that a person can request assistance in ending his/her life? Some would argue that this is the case but as assisted suicide is currently illegal in the UK this is not an issue that a clinical ethics committee should need to consider. Does respect for autonomy mean that a patient can request treatment that the clinician does not think is in his/her best interests, or treatment that is futile? In these situations the principle of respect for autonomy comes into conflict with other ethical considerations, such as preventing or avoiding harm, or distributive justice.
The deep problem we face when it comes to “end-of-life” issues is that we live in a highly personal time. That is, let me emphasize, more good than not. Our sophisticated theorists, both liberal and libertarian, tend to think that nothing trumps keeping the people who are around right now alive and free—and by free we mean, among other things, as free as possible from being determined by nature. People today think of themselves less than ever as part of wholes greater than themselves—as part of families, communities, countries, churches, or, of course, the species. They also think of themselves less as deeply relational beings and more as free or autonomous individuals. That means the strong tendency is there for one to think that one’s death—one’s personal extinction—is the end of being itself.
I spoke to Dr. Susan Block, a palliative-care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”
The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.
Statistics show only 5 per cent of Canadians have had an end of life conversation with their doctor. Maybe that’s at least in part why 70 per cent of seniors don’t wish to have life-preserving treatments, yet 54 per cent will be admitted to an intensive care unit at some point. It may also be key to the Canadian Medical Association’s reminders that only 16 per cent of Canadians have access to best-practice medical care. Palliative care is often the tug-of-love orphan in the life-versus-choice argument. Both sides claim to want more of it. Both use its recognized benefits to pursue very different rhetorical outcomes. Could a source of the discrepancy be the very hypermedicalized approach to dealing with end-of-life issues? I’m starting to think so.
The discussion will feature all aspects of end-of-life issues, including the importance of having the conversation with your loved ones about your wishes; the legal issues including advance directives and wills; the role of hospice and palliative care; and the decision-making process.
End-of-life care has emerged of late as a peculiarly compelling and vexing issue of ethics and health policy. It is compelling because almost every adult these days has had some experience with the death (usually in old age) of a spouse, parent, or grandparent, sometimes good, sometimes bad. It is rarely easy, and those deaths remind us all too bluntly that it will eventually be our turn.