This summer, The duty takes you on the side roads of university life. A proposal that is both scholarly and intimate, to be picked up like a postcard. Today, with Marie-Alexandra Gagné, we reflect on the need to speak openly about death, despite taboos.
Talking about death is fashionable. Since the coming into force of the Act respecting end-of-life care in 2015, death has become a topical subject, an evolving bill, a political interest, but also a right, that of “dying in dignity “. This expression, now known to all, has been wrongly associated with medical assistance in dying (MAD). Wrongly, since there are as many ways to die with dignity as there are people. To die with dignity is to die in accordance with our values and our beliefs, with what makes sense to us. Talking about death in order to talk about life better is what made me want to pursue my doctoral studies in bioethics.
Debating the broadening of eligibility criteria for MAID does not necessarily imply introspective reflection on death. Although this is on everyone’s lips, we tend to approach it only on the surface, to touch it. Few people discuss their end-of-life preferences with friends over a glass of chardonnay on a Saturday night. The taboo, even the denial of death, limits our discussions about the end of life, but also our ability to recognize its natural and universal character.
Consciously or not, we tend to distinguish the “real death”, the one that just happens to others, from our own, the one whose existence is almost a myth. Talking about death is disturbing, since it forces us to recognize that we are vulnerable, like everyone else.
In bioethics, our main playground is that of unease, of uncertainty. My colleague often says that we wear “dark glasses” because our role is to identify risks, highlight blind spots and challenge the status quo. Pessimistic only in appearance, wearing “dark glasses” means asking inconvenient questions, those that nobody wants to hear and even less nobody wants to answer, often by moving air, but always remaining authentic.
When I began my research on MAID, I noticed that it is often spoken of as a treatment that is asked, to which one is entitled when one is eligible. Putting on my “dark glasses”, I realized that we rarely talk about MAID as a treatment that is administered. Paradoxically, MAID is the ultimate expression of a person’s decision-making autonomy, but its fundamentally relational nature cannot be dissociated from it.
MAID marks the imagination of loved ones who are waiting for D-Day, just like that of health professionals (HP) who anticipate the decisive moment several days before their shift. MAID marks the imagination of the nurse who receives the MA request from a patient with whom he has developed a bond of trust; that of the pharmacist who prepares drug kits containing molecules administered every day, but never with the intention of causing death; that of the doctor who initially decided to study medicine to save lives, not to end them.
MAID is a treatment whose creation of meaning is impossible if one does not enter into a relationship with the other. Let’s think about it: the gesture in itself has no meaning, except that of the person who wishes to benefit from it. To speak of death is to recognize that it leaves an indelible mark on the living, even when it has a meaning.
What is disturbing about “medical assistance in dying” is that its intention and its consequence are the deaththen let this death be medically supervised, even planned. The word “help” often remains in the shadow of its associates, although just as important. Since the legalization of MAID, requests have increased every year, and exponentially. However, in the field, the number of SPs who agree to participate in its administration is particularly low and remains relatively stable.
Compromised accessibility?
Let us specify that the legitimacy of MAID does not disregard its emotional, psychological and moral charge. In this sense, several HCPs refuse to get involved in its administration because it is a care that is irreconcilable with their moral or religious convictions, while others refuse to participate in it because of more pragmatic factors emanating from of their “on-the-ground” reality. On the eve of the broadening of the eligibility criteria for MAID, and, consequently, of a potential upsurge in requests, the weak involvement of SPs risks compromising the accessibility of MAID if the offer becomes below demand.
By uncovering the factors that inhibit SW participation, I hope to be able to offer strategies and resources that meet their needs, or at least reduce their discomfort. To speak of death is to recognize the importance of speaking about it in solidarity, because we do not have to face it alone.
I see my project as an opportunity to put on our “dark glasses” to better talk about death; to talk about it more, with authenticity, but above all in an inclusive way. I am deeply convinced that, as a society, we do not have to choose. To choose between the needs of the patient and those of the carer, between the extension of the eligibility criteria for MAID and the psychological integrity of SPs, between a care that we asked and a care that we administers.
Admittedly, choosing one to the detriment of the other simplifies the reflection, but it also cuts it off from its humanity. To paraphrase Edgar Morin, the father of the theory of complex thought, let’s say that the simplification of complex subjects necessarily materializes to the detriment of the well-being of the population, since it mutilates all the sensitivity and complexity that make us humans. It is therefore imperative not to lose sight of the uniqueness of the person behind the care they request or administer, as well as the distress that can be associated with it.
Although the uncertainty that characterizes it makes us dizzy, talking about death allows us to better understand what has meaning for us, what hurts us, but also what we need to make death more bearable or less painful. Regardless of what we mean by the words “die with dignity,” let us remember that death unites us. After all, talking about death does not attract death, but it certainly gives meaning to life.