On February 16, the Minister for Health and Seniors, Sonia Bélanger, tabled Bill 11. If approved by the National Assembly, it will allow people living with the diagnosis of an illness leading to the inability, such as Alzheimer’s disease, for example, to make an anticipated request for medical assistance in dying.
While major figures in the Quebec fight in favor of advance demand welcome this bill with relief, other voices are raised to express their concern at the idea that people who have become incapacitated can receive such irreversible care. and without appeal than that of medical assistance in dying.
Beyond the practical, clinical and legal issues that have mobilized the forefront of public debate on the issue in recent days, the recognition of advance consent is based on a more fundamental philosophical and ethical reflection, which the current debate should not save more. I propose here to present the broad outlines.
We all pursue “critical interests” that constitute our identity
Despite the hesitations, wanderings and changes of course that punctuate a life, most people will seek to give it a meaning and a general direction. We do not generally live by randomly selecting, according to our changing desires, the experiences, achievements and meaningful relationships in which we invest ourselves.
When at a crossroads, we face a set of possible options, we most often prefer the one that seems to us the most in tune with our deepest values. This is the case when it comes to our professional projects and our relationship commitments. And this is also the case when it comes to choices about our bodies and our health care.
To account for these key values and these interests which give a guiding thread to our lives, which confer an overall coherence to our choices, the American philosopher Ronald Dworkin forged the concept of critical interest.
Our interests can be violated when we lose the ability to defend them
If we can defend ourselves the respect of our critical interests, and accept or refuse health care according to these interests when we are still autonomous and in full control of our faculties, what happens when Does the disease weaken our memory, weaken our cognitive faculties, our judgment and our autonomy to the point where we no longer have the ability to defend ourselves respecting our own interests, our principles?
Should we simply accept to abandon to the judgment of others (to that of a doctor or our relatives) all the decisions to be made about our health care?
Advance requests ensure respect for our “critical interests”
For a philosopher like Dworkin, the final decision should be no one other than the autonomous “me” that we were (before developing the disease leading to incapacity). The anticipated request then represents the only means of prolonging the exercise of our autonomy and thus of ensuring that the decisions that will be made about us will reflect as faithfully as possible the values that define us.
It is for this same reason that we prepare wills, that we register a form of refusal of treatment in anticipation of an accident.
As Dworkin would say, that the “last scene of the theater of our lives” unfolds in accordance with the guiding principles that guided it is a matter of integrity. Ignoring the critical interests that shaped our identity and guided our lives would cause us moral harm. It would be like ending the last movement of a symphony on a false note, brushing a brushstroke askew on the canvas of our lives.
What about Bill 11?
Following this philosophical and ethical approach, Bill 11 (PL 11) therefore goes in the right direction by recognizing advance requests. Certain amendments should nevertheless be made to it. First, the word “request” should be deleted from PL 11, to replace it with that of advance “directives”. In other words, these advance directives for medical assistance in dying should be enforceable. This is what Sandra Demontigny, spokesperson for the Quebec Association for the Right to Die with Dignity, recently claimed, herself suffering from an early and hereditary form of Alzheimer’s disease.
Then, still according to this approach, the application of the advance request should be able to happen earlier than provided for in Bill 11. For example, medical aid in dying should be able to be provided at the moderate stage of the disease, whereas the wire memories that bind us to our past and those we loved begin to fade and we only have brief flashes of contact with our past and our loved ones.
Finally, the advance request should not be reserved only for people who have already been diagnosed with a disease leading to incapacity. Insofar as other factors are likely to lead to incapacity, in particular the large doses of medication ingested to soothe the pain caused by cancers and other illnesses, it should be considered to sign an advance request for assistance to die from the moment one suffers from a serious and incurable disease, even if it does not, by itself, lead to incapacity to consent.
Regardless of the nature of the disease from which we suffer, in moments of extreme fragility, we should be able to count on our anticipated wills to relay our demands when our voice is weakened to the point of becoming inaudible.