the Citizens’ Convention told from the inside

► Julian L., 35, civil servant

Julian, originally from Ardèche, has been living in Loire-Atlantique for four years after starting his career in Paris. His university course in political science and European politics led him to become a civil servant. This spatial planning specialist works in Nantes but lives in the countryside, in the north of the department.

“At the end of this fourth session, Sunday January 22, we were asked to vote on whether we had progressed in our thinking. Like a majority of participants, I answered “yes”. I distinguish much better the arguments for or against an evolution of the law and the different dimensions – political, philosophical, spiritual, economic – of the problem.

Given the state of our health system, which is grossly lacking in resources, the risk of abuse is possible. This is a concern that seems to me to be shared by other members of the Convention. In my opinion, if there is an opening to legalize active assistance in dying, we will have to be careful, beyond medical criteria, to set up strict barriers so that the public authorities provide the means necessary for development palliative care.

But should the law be changed? The most liberal advocate the right to euthanasia and assisted suicide for all in the name of individual freedom. On the other hand, others believe that palliative care can solve all the problems. I do not recognize myself in either of these positions, but I admit that I have not yet drawn my own red line.

Of the three round tables we attended this weekend, two did not bring much to my thinking. That on the implementation of the Claeys-Leonetti law and the national plan for palliative care 2021-2024 returned to things already seen. The presentation of the legislation of Quebec, the United States, the Netherlands and Italy was more interesting, but these examples should be taken with a distance because the countries do not have the same culture. The goal is to find the French model.

On the other hand, the round table on refractory suffering was very strong. The testimony of the representative of an association who lost several members of her family to Charcot’s disease, a terrible neurodegenerative disease with no cure, touched me deeply. I remember that suffering is unique to everyone and that it is not only physical. The psychological and moral suffering of the patients must also be taken into account.

Then we deliberated in small groups. A whole host of proposals came out of it, but they still need to be clarified and prioritized. Will we be able, within the set deadline, to transform this raw material into recommendations? Halfway through the Convention, I wonder. The field of possibilities remains open: whether or not to change the law and, if necessary, under what conditions, just like saying “we don’t know” which can also be a result. »

► Marion N., 81 years old, beneficiary of the minimum old age

Marion is one of the eight people in a precarious situation that the Convention on the end of life wanted to include among the citizens drawn by lot. Since the disappearance, in 2021, of her companion, swept away by cancer, she has lived in a residence for the elderly in Aubervilliers (Seine-Saint-Denis) and rarely sees her three grown children. She receives the minimum old age pension – just over €900 per month – and has been active in ATD Fourth World since 1994.

“Has my thinking progressed? Yes, thanks to the Convention, I learned a lot of things that I didn’t know about the current law. Deep sedation, for example, I didn’t know that existed. If a patient knows that he is going to die soon and that he is in too much pain, he can ask the doctor to put him to sleep for good. The problem is that we no longer give him food and drink. I hope for him that he does not suffer. We don’t know because no one has come back to say it. And then, I wonder if it’s not some kind of suicide. It might be legal, but I can’t get used to it.

I also didn’t know that you could leave advance directives. It’s a sort of testament in case we’re oblivious. I asked people around me to find out if they knew about it. Same as me. I spoke about it to my daughter who is 56 years old. She neither. I advised him to make it: “If you are in pain and you can’t complain, what else do you do?”

In the residence where I live, a neighbor has just died in the hospital. He wanted to be cremated, but he didn’t write it down and, as he was under guardianship, he was buried. Maybe if he had left advance directives, we would have respected his wishes. We should do more advertising for people to do this paper.

What I would like to do now is go and see what happens in a palliative care unit. The people who organize the Convention gave us the list of all the French hospitals that have a service. I’m going to try to go to that of the Avicenne hospital, in Bobigny, the closest to my home. Nédine, a young North African who participates like me in the Convention, has promised to accompany me. But we already need permission.

The round table on foreign countries talked too much about the law. We should also talk about death. In France, it is a taboo subject. In Madagascar, where I lived for a few months, death is a celebration, it is part of life. Maybe we should take inspiration from that.

On the other hand, I was very interested in the round table on suffering. A lady who lost several members of her family to Charcot’s disease said that people died of suffocation. It must be terrible. There, I understand that they want assisted suicide. But it has to be case by case, not generalize it. I stay for palliative care. But that they are with equal access for all: from the very rich man to the tramp. »

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