The auditorium was full. Inside, a medical and academic community, quietly installed in the stands, cockades around their necks, lived out the last minutes of the conference. A full listening, of rare density, was offered to Bélanger, to this voice from which we never really completely recover. She filled the entire space with this indescribable mixture specific to the artist, he who knows so well how to juxtapose the powerful with the very gentle.
“The world can leave the world whenever it wants. Go wherever he wants, whenever he wants. Make April a May, May a November. It’s all in the manner. In the way. »
Seated at the front, with my colleagues from the invited Quebec delegation, proud of Daniel as if I could appropriate anything of his talent, I listened to people cry. There is reason to have hope for the future of the world, when a room full of scientists, clinicians, professors, researchers and health care managers ends a conference with a song by Daniel Bélanger.
It’s the DD Louise Lafontaine, president of the Quebec Palliative Care Association, who had the wise idea of bringing us to this moment, to close her speech at this Franco-Quebec conference on palliative care, in Clermont-Ferrand, France.
I, who had always heard this song as being strictly linked to the couple, having even already played it to someone who, at the time, made me sad for wanting to live somewhere else that excluded me too much for my taste, I discovered to what extent each word could also find its true meaning on the subject of this other great separation, the last, that of death. And it is precisely this last major stage of life that we had just discussed for two whole days, this stage where, with great cries of “never again”, someone writes the last chapters of their existence.
“Never again this, never again that, never again me…”
That’s what we’re talking about, yes, in a conference on palliative care. Of that, of death, of all these fragile moments, where the light is often concentrated, right next to the greatest pain. “Obviously we talk about death in a palliative care conference! » you will say to me, to which I will respond that the evidence of death, in its full reality, does not lose its effect on us, even when we have the impression that it has whispered many of its secrets to us in the hollow of the ear, very close, so close. Even for those caregivers who come into contact with her so often, through her ineffable mystery she continues to invoke a whole series of stories, quests, choreographies, both the beautiful and the less happy.
Throughout my own illness, I myself was caught up in the faces of my caregivers, trying to decode what was happening inside them, while my own universe of meaning collapsed in front of them. By professional distortion or by survival instinct, I cannot say, I found myself scrutinizing every face I encountered for the slightest eyebrow. A bit like a very young child learns to read his parents’ faces to know the kind of day he is going to have, I had become this patient-scientist, this infant passionate about the mental state of those who were caring.
Everyone has their own way, but as everything is in the way, it seems that this is resolutely mine, the one that has always helped me get through life. And it is precisely this way that took me to Clermont to present the current state of my work on the depth of the existential, even spiritual, upheavals experienced by doctors when they announce bad news in oncology.
It’s all in the manner, there too. The way in which the end of the world is announced matters a lot, obviously. But it is also extremely complex and demanding for the person, in a lab coat, on the chair opposite. Again, tools are often placed between people. If the protocols “ evidence-based » in secure steps, there remains something unthought, a little named, a little legitimized on a whole other experience which goes beyond the fact of having “managed the announcement well”. We talked about all this together.
Leaving the Jean-Perrin center in the evening, I could see the Puy de Dôme, surrounded by this Auvergne light as welcoming as Brassens would have sung about it. Walking along Boulevard Loucheur, towards Place de la Victoire and its lava stone cathedral, I was still inhabited by this moment when we had all thought about our deaths, ours, and that of all those we accompanies us, no matter where we are on the care continuum.
I thought about the first stories of medical assistance in dying that have emerged in recent years in Quebec. I thought of sudden, accidental, terrible deaths, which traumatize by their suddenness, their absurdity, and the irregularity of time that they sow like an aura over the rest of the days of those who remain. I thought about this preconceived idea that we so often hear about dreamed death: “in my sleep, without realizing it”.
I wondered what you would tell me about it. How do you feel about your death? Do you think about it yourself? And, if so, how does it present itself to you, as a terror? A mystery ? An adventure ? An important moment?
I left the conference with the impression that there were a thousand ways to die, but that some were more about “dying well” than “dying badly” all the same. I wondered if, in this area as in many others, we did not have a way that was still too closely tied to injunctions of performance, efficiency, paid actions, care organizations, to grant these crucial moments, something like an attention based on things that are difficult to quantify, like a quality of presence, a confidence, a curiosity of the other, a patience and a dense silence like that of the Clermont-Ferrand auditorium.
“You can leave the world. But there is a way. »