On February 16, the Minister for Health and Seniors, Sonia Bélanger, tabled the law Project amending the Act respecting end-of-life care and other legislative provisions.
If adopted by the National Assembly, Bill 11 will make Quebec one of the few societies in the world (along with Belgium, Luxembourg, the Netherlands and Colombia) to authorize advance requests for medical aid. to die (MAD), in anticipation of incapacity.
While the most recent report of the Special Joint Committee on MAID from the Canadian Parliament supports advance requests and that the Alzheimer Society of Canada welcomes Bill 11 with relief, other voices express their concern about the idea that we can receive medical assistance in dying, even though we can no longer reiterate our will.
We are professors of moral and political philosophy. Having respectively co-chaired and assisted as analyst-expert and editor, the Expert Group on medical assistance in dying and the question of incapacity mandated by Quebec, we had the opportunity to hear numerous testimonies, both in favor and against the establishment of such a regime, and study the associated risks.
In our view, the reasonable concerns that may arise from the implementation of an advance request regime should not lead to its categorical rejection, but rather to its rigorous supervision.
What the law formally allows
Since 2015 in Quebec, and 2016 across Canada, adults capable of consent, who live with a serious and incurable illness causing constant and unbearable physical or psychological suffering, can make a request for medical assistance in dying.
Since March 2021, the new federal law no longer requires that the death of the person be reasonably foreseeable in order to benefit from MAID. In Quebec, in 2022, according to the End of Life Care Commission 66% of people who received this care in 2022 had cancer, 7% heart or vascular diseases, 7% lung diseases, and 10% neurodegenerative or neurological diseases that do not affect the ability to consent.
What, in practice, is actually possible
For the time being, although people who are living with the diagnosis of a degenerative neurocognitive disease (such as Alzheimer’s disease, for example) can, under the law and formally, apply for MA, it is likely that a large proportion of them cannot, in practice, receive it – unless there is a very flexible and generous interpretation of the other eligibility criteria by the attending physicians.
Indeed, the condition of people who live the first stages of their disease does not meet, most of the time, all the eligibility criteria (under a strict interpretation of these, at least). First, they generally do not yet experience an advanced decline in their capacities nor constant and unbearable physical or psychological suffering.
Neither eligible for MAID when they are still autonomous and able to consent, nor eligible once they are incapacitated, they are de facto excluded from access to medical assistance in dying.
While all citizens, without distinction, should enjoy the same rights (not only formally, but in practice), access to medical assistance in dying is currently differentiated according to the nature of the disease that affects them and the capacities it compromises. This is a morally risky and arbitrary factor.
The advance request in order to assert one’s right to self-determination
Prohibiting advance requests would be tantamount to abandoning these people to their suffering and their fate when they have reached the last stages of their illness, giving them as their only possible recourse the signature of a refusal of advance treatment.
We believe that living with a degenerative neurocognitive disease should not deprive us of the right to choose an end of life free from unbearable suffering and in accordance with our values. For people who suffer from illnesses leading to incapacity, the advance request represents the only means of asserting their fundamental right to self-determination.
People living with dementia or a decline in their cognitive abilities are however particularly vulnerable, and the risks that an advance request regime could represent should be taken seriously. It is by keeping these risks in mind that we can better think about the essential conditions that should be met for their authority to be recognized.
Project yourself into an unknown future
One of the main difficulties with advance requests for MA stems from the effort of imagination and abstraction required on the part of the person who drafts them. She must anticipate the different illnesses she could experience, as well as the way in which she will react, in a hypothetical future, in the face of these ordeals.
Drafting an advance directive for medical aid in dying, its opponents suggest, amounts to groping, in total darkness, while taking a risk whose outcome can only be fatal.
However, although this risk of “anticipating the wrong choice” may seem decisive, it is possible to respond to it by requiring that the writing of the request not be done blindly, but following the reception of a diagnosis of a serious and incurable disease. Having received their diagnosis, the person will be accompanied and guided by the medical and nursing staff, as well as their relatives. She will be able to have a good understanding of her illness and its likely course, and will be made aware of the other clinical options available to them.
Difficult to anticipate the lived experience of the disease
Adding the condition of prior knowledge of the diagnosis therefore addresses part of the problem. But critics of advance requests could point to other potential difficulties.
In fact, even if it were possible to write an advance marketing authorization request with a good understanding of the probable course of our disease, our ability to anticipate the lived experience of the disease, on a day-to-day basis, in his flesh, would remain unreliable. We could imagine ourselves preferring to die, rather than experience such a transfiguration of our personality and degradation of our physiological and cognitive abilities. However, it is not impossible that, when the time comes, we have adapted relatively well to our medical condition (as evidenced by certain cases of people living with so-called “happy” dementia, at least at certain moderate stages of the disease ).
Indeed, some psychology studies social (some of which are recalled in this open lettersuggest that when it comes to anticipating a progressive decline in our physical abilities (but we could extend this reflection to physiological and cognitive declines), our first reflex is to focus our attention on the losses caused by illness and disability.
We cannot progress in the reflection on medical assistance in dying by ignoring ableism, ageism and saneism (discrimination based on abilities, age and mental health) which historically shape our institutions and laws. They weigh on our societal culture and influence our choices: the prejudices and negative stereotypes commonly associated with cognitive decline and dependence are in fact likely to negatively color our apprehension of a future in a situation of illness and incapacity.
The criterion of suffering remains fundamental
These considerations are fundamental, but we believe that they do not run counter to advance requests. They do not call into question the other eligibility criteria for this care, among which are constant and unbearable physical or psychological suffering.
We can recognize the importance, for some people, of the possibility of drafting an advance request for MAID without sacrificing the attention that will have to be paid to their way of coping with the ordeal of their disease, when the time comes. If it turns out that the person who had registered an advance request for MAID has adapted well to his condition, that he is not experiencing the unbearable suffering that he was anticipating and still enjoys a certain quality of life, she simply won’t get medical assistance in dying, which is ultimately about relieving suffering.
We are far from “death a la carte” or “death on demand” which has been denounced several times in the media in recent years.
The anticipated request for medical assistance in dying, like the refusal of treatment, remains so far the best way to ensure that the choices that will be made about us when we no longer have the capacity or the awareness to make them , reflect as faithfully as possible the values that defined us.
