It’s a call he never expected to receive. A doctoral student in physics, Ernest devotes his time to his thesis on fluid mechanics. But not only. For the past few months, the 25-year-old young man has been one of the 184 members of the Citizens’ Convention on the end of life. Launched at the end of the year by the Head of State, this convention, like the one that preceded it on the climate, should serve as the basis for a new law on the end of life, which could open in France the right to benefit from active assistance in dying.
This weekend, the 184 members meet for their ninth and final working session at the Palais d’Iéna, headquarters of the Economic, social and environmental advice (Cese), in charge of organizing this work. A final session during which they will finalize the document that they will submit to the government. In the process, Ernest and his 183 other fellow citizens will be received this Monday at the Elysée Palace.
What does it look like to be part of this Citizens’ Convention on the end of life? Ernest shares his experience with 20 minutes.
How was the announcement of your draw and how did you react? Have you considered refusing?
One morning, I was on the train, I received a call telling me that I had been drawn by lot to participate in the Citizens’ Convention on the end of life. I was skeptical at first, with all the weird calls you can get! But the interlocutor of the Cese explained to me what the convention consisted of, then sent me documentation by e-mail so that I could make an informed decision.
As much as I had heard of the Citizens’ Convention on the climate, the progress of which I had followed because the themes interested me, I had no idea at all until this call that there was to be one on the end of life. It’s a theme that didn’t speak to me, on which I had no knowledge, no experience, and no real opinion until then. I talked about it with my relatives, and everyone encouraged me to live this experience. At first, it was more the approach than the theme that made me want to participate, but I didn’t consider refusing. It is a unique democratic and civic exercise. But before confirming my participation, I consulted my thesis supervisors to make sure that being absent on Friday nine times was not going to be a problem, and they gave me the green light.
How are the sessions going? How did you form an opinion on the recommendations to be made?
I live in Occitania, I take the train early Friday morning to reach the Palais d’Iéna in Paris. Work sessions begin at 1:30 p.m., continue all day Saturday and Sunday morning. What is well thought out is that the sessions are scheduled every other weekend, this leaves time to breathe, because linking the work week and the weekend to the convention and so on, that would have was heavy.
The convention is organized in three phases: appropriation of the subject, debates and deliberations, and restitution. We first interviewed experts: many doctors, caregivers and psychiatrists, representatives of religious cults or even philosophers. Enough to “clear up” the subject and acquire a base of knowledge before the next step, even if in reality the learning was continuous.
From the start, we also had a very large documentary base, with testimonials, books and the entire chronology of the various end-of-life laws adopted since the end of the 1990s. And many of us among the members wanted to know more, solicited other experts and took the initiative to visit palliative care units. This exchange on the ground with the medical profession makes it possible to see what is really going on.
And how were the discussions? Were they inflamed?
You could say to yourself that at 184 in a hemicycle, things can get out of hand quickly, but what struck me is that everyone has always been listening, there have never been moments strained. It’s as if we all felt bound by a form of tacit contract between us: it’s a complex and sensitive subject, we have different opinions and we respect them all. Afterwards, the debates were rich and lively, with increasingly strong positions as we progressed in the process and expanded our knowledge and arguments. Even if individually, we stick to our position, debating with people we would never have met, with opinions and profiles different from ours, allows us to confront what we think, to consolidate our opinion. It is really an individual and collective reflection.
However, if the debates in the hemicycle are the most striking, this is not the main working method, we do not always end up at 184. Every weekend, we are randomly divided into groups of ten, with themes to work on, then pooling of our exchanges in groups of thirty. These sessions in a smaller committee make it possible to prepare the arguments for the debates in the hemicyle.
Isn’t that too trying?
No, the rhythm and the organization are well thought out. And then, during those working weekends when we’re away from home, the evenings are times when we relax, we go have a drink, we chat, these are really pleasant moments, we decompress by talking about other things than end of life.
It’s a unique experience, which makes you reach out to others and get out of the circles in which you evolve, with encounters that I would never have made, and people that I intend to see again! There is in this particular adventure a very strong human side, which brings a lot.
And how does it feel to bear the responsibility for such a reflection, which is intended to lead to a law, and potentially open the right to have active assistance in dying?
At first, I didn’t really realize it, but I feel really lucky to have been drawn. Today, after all this work, I have formed an opinion, I can defend it with precise arguments, and I feel like I have done the job that was expected of me.
What guided me was the question we were asked: “Is the end-of-life support framework adapted to the different situations encountered, or should any changes be introduced? There has obviously been a lot of talk and debate about active assistance in dying. We came out in favor of opening it up, but the idea is to be able to take account of the plurality of opinions expressed during the nine working sessions, and for this to be reflected in the document that we are going to submit to the executive.
There is also a very important section on the application of the Claeys-Leonetti law, on the establishment of effective access to palliative care for all. A goal that has not yet been achieved. This is a central point in the conclusions that we are going to make, before being received on Monday at the Elysée. This day will mark the end of the convention.
What are you waiting for next? Do you fear that, as with the Citizen’s Climate Convention, few of your proposals will be accepted?
Already, I’m happy with the way this convention went, I made my contribution to the collective work. Our document will be a working basis, a citizen’s voice which is added to the voice of CCNE’s experts. And now it’s going to get more political.
Will a law come out of it? I don’t know, but I want to be optimistic, I hope our work will be useful. I would be disappointed if it wasn’t taken into account but I’m confident we did our part of the job in a good way. I will be attentive to what happens next, but now we have to accept the handover.