The recent parliamentary report on physician-assisted dying brought back memories of my time in graduate school. During my studies I had an opportunity to attend a seminar on abortion and euthanasia led by the American legal scholar Ronald Dworkin and the British philosopher Bernard Williams. Dworkin used the seminar to test ideas that he would be exploring in an upcoming book, eventually published under the title Life’s Dominion.
Like so many seminars of this type, students were provided with extreme scenarios to highlight a particular ethical dilemma and foster debate. I still remember the discussion about Alzheimer’s disease and euthanasia. We were given a scenario where a person diagnosed with Alzheimer’s asked to be euthanized once the disease progressed to an advanced state. Students were then asked to imagine a scene sometime later where the person, now ravaged by the disease but seemingly content, sat quietly watching TV in a nursing home and eating a peanut butter sandwich. When two orderlies try to take the person away to be euthanized the patient becomes frightened and starts to shout “leave me alone!”
We spent hours debating what should happen next in this shocking scenario, although without as much energy as you would think. Most of us in the seminar felt that it was a rather far-fetched example so removed from reality that it seemed a little ridiculous. Although Dworkin spent considerable time discussing the scenario in his book, he also acknowledged the extreme nature of the proposal. As he noted, the “suggestion might seem preposterous: how can we permit anyone to arrange in advance to be killed years later, when he may then give every sign of wanting to live?”
Twenty years later, Dworkin’s science-fiction-like scenario is under serious consideration in Ottawa. The recent report of Parliament’s Special Joint Committee on Physician-Assisted Dying recommended that those “diagnosed with a condition that is reasonably likely to cause loss of competence” be able to request that assisted dying occur at some later date, once certain criteria had been met.
Although this idea of an “advanced directive” could apply in many different circumstances, the most common example given is dementia.
As one witness explained to the committee, a person diagnosed with the onset of dementia might conclude that they want to be euthanized when the disease reaches a certain point that matches “objective, verifiable criteria.” This might include “being bedridden, being unable to feed, wash or shave oneself or being unable to speak for 30 days or more.”
Is it not time to say stop?
What most Canadians thought was a discussion about allowing dying individuals in the throes of extraordinary suffering to seek relief through suicide, has gone considerably further. One of the foundational principles of assisted dying is that the person not only has to be absolutely certain of their decision at the time the procedure takes place, but they have the right to change their mind at any moment. How can anyone possibly know the feelings of someone with advanced stages of dementia?
There is also a larger issue. It is very true that as our population ages, we are going to see more and more seniors with dementia. As a society we need to grapple not only with how we will care for them but how we will affirm the importance and value of their life, regardless of the disease. As the CEO of the Alzheimer Society of Canada told the committee: “Life does not end when Alzheimer’s begins. The right to wellness must be protected, and stigma must be mitigated. The stigma associated with this disease can be as devastating as the changes that will occur in someone’s life.”
And if advanced directives related to a dementia diagnosis were to become commonplace, what message are we sending those who refuse to take that option? Are we not creating a situation where those individuals might start to experience guilt for burdening their families as well as the healthcare system?
And finally, what about our physicians? What kind of society asks those charged with medical care to euthanize someone under such uncertain circumstances based on a directive that may have been signed years earlier in a very different context.
I recognize the tragedy that dementia represents and, like far too many Canadians, have had first-hand experience dealing with it. I also recognize that an advanced directive might give a person in the early stages of disease peace of mind and prevent them from prematurely taking their lives. But there has to be stricter limits.
As a nation we are struggling to find a law that finds that difficult compromise between two core values of our society — the sanctity of life and personal liberty. Physician-assisted dying is likely here to stay. But let’s leave this particular scenario in the philosophy seminar where it belongs.
John Milloy is a former Ontario cabinet minister who served as MPP for Kitchener Centre from 2003 to 2014. Prior to that, he worked on Parliament Hill, including five years in the office of Prime Minister Jean Chrétien. He is currently the Co-director of the Centre for Public Ethics and Assistant Professor of Public Ethics at Waterloo Lutheran Seminary, and the inaugural Practitioner in Residence in Wilfrid Laurier University’s Political Science department. He is also a lecturer in the University of Waterloo’s Master of Public Service Program. John can be reached at: firstname.lastname@example.org or follow him on twitter at: @John_Milloy.