For Bintou N., as for the other participants in the Citizens’ Convention on the end of life, officially set up the day before, there will be no weekend. Saturday, December 10, the 185 French people chosen by lot to reflect until March on a possible modification of the law were gathered at 8:45 a.m. in the hemicycle of the Economic, Social and Environmental Council (Cese). A schedule that does not seem to affect Bintou’s good mood.
Independent IT consultant and mother of three young children she is raising alone in Seine-et-Marne, Bintou, 44, is used to getting up early, including on days off. And if her presence here supposes some personal sacrifices and a sense of juggling in the family organization, she did not hesitate to answer the call.
“I don’t come with convictions”
“When I was asked by phone if I was ready to participate, I was in Mali, with my 85-year-old dad who is very ill. He told me that as Muslims we do not have the right to end our lives, but sometimes there are complicated situations,” she says. That’s what made her decide to say yes. “This sensitive subject touches on what is most human in us. I don’t come with convictions. I have lots of questions. But I have the will to walk with others and to listen in order to understand. »
This is good: at 11 am, Alain Claeys, former deputy and co-author, with Jean Leonetti, of the latest law on the subject, is announced in the hemicycle to present the current framework. Facing the attentive audience, he will retrace, with pedagogy, thirty years of legislative developments, from the 1999 law on palliative care to that of 2016 establishing advance directives, the prohibition of unreasonable obstinacy and authorizing the deep and continuous sedation until death.
So many notions that remain poorly known or misunderstood, as shown by the series of questions that follows the presentation: “If the law prohibits relentlessness, why are doctors trying to save patients who are going to die anyway? »,“Is it true that in palliative care we let people die of hunger and thirst? », « From when can we write our advance directives? »
The strict framing of Yaël Braun-Pivet
But how to answer in detail when time is limited? “We will have 27 full days to clarify all these points”, concludes, provisionally, Claire Thoury, president of the governance committee of the convention. Because Yaël Braun-Pivet, President of the National Assembly, has already come to the podium to address a “message of trust” to the participants and, at the same time, dot the i’s in the division of tasks.
“Your opinion will be our precious compass, but it is the elected representatives of the nation who will take on the mission, entrusted by the Constitution, to decide on the law. You are free. Parliamentarians too she reminds those who are worried about how their final opinion will be taken into account. “Sometimes you have to know how to give voice. You are here for that. I guarantee that your word will be taken into account”, promises them Thierry Beaudet, president of the Cese, to close the exchange.
“In my head, there are questions”
The afternoon is just as intense. From 2:30 p.m. to 5:30 p.m., citizens must attend the presentation workshops of three institutions at the center of the debate: the Cese, the National Center for Palliative and End-of-Life Care (CNSPFV), a public body attached to Matignon and linchpin of the convention, and the National Consultative Ethics Council (CCNE).
In room 301, the immunologist Jean-François Delfraissy, president of the CCNE, came to explain opinion 139 published by the organization on September 13, which, for the first time, envisages the legalization of “medical aid for die “. “We have sought to find the balance between the aspiration to autonomy, this freedom that we all claim, and the necessary solidarity that we owe to the most fragile. It is now up to you to say how far you have to go and under what conditions. »
Micha J., 52, a literature teacher from Haute-Savoie, looks puzzled at her notebook overloaded with notes. “He speaks with a lot of circumlocutions. In my head, there are questions. » In the evening, the participants were able to breathe in front of the France-England quarter-final of the Football World Cup, broadcast on the big screen at the Palais d’Iéna.