Barely out of the Elysée, where they were received by Emmanuel Macron, Soline and Jean-Noël took part, on Monday, in an exchange with Internet users of franceinfo.fr. They talk about their work and the president’s announcements.
Citizens talk to citizens. Two members of the citizens’ convention on the end of life participated, Monday, April 3, for an hour, in a session of questions and answers with the readers of franceinfo.fr. During this exchange, they defended the main conclusions of their report and reacted to Emmanuel Macron’s announcements. They also testified to their experience within this ephemeral assembly, a “democratic and citizen model” that they would like to see “grow and prosper”.
As was customary within the citizens’ convention, Soline and Jean-Noël insisted on presenting themselves with their first names only. Aged 32, Soline lives in Bouloire (Sarthe) and works in the field of disability. She says to herself personally “unfavorable to an opening towards active assistance in dying and above all favorable to the development of palliative care”. Professor of history and geography in Paris, Jean-Noël, 48, is “in favor of assisted suicide under conditions, as well as the possibility of euthanasia for certain specific cases”.
@Lulu28: What do you think of Macron’s announcements?
Soline: I’m a little mixed. I am very happy to finally have a ten-year plan, and not a three-year plan, which will really have weight, and with which we can hope for a real evolution of training. All the same, I would have liked a little more time before writing a bill on active assistance in dying, so that it would be well considered and thought out.
Jean-Noel: I am satisfied. I have the feeling that the president followed our work well, that he received our conclusions well and that his commitment to proposing a change in the law by the end of summer 2023 was sincere. I think it will take our rendering into account. We really have the feeling that this convention was more successful than the previous one on the climate and the president has undertaken to lead new ones, always with the Cese [Conseil économique, social et environnemental]. From a democratic point of view, it’s fabulous!
@N56: A ”ten-year plan”! We cannot, on subjects like this, still be in immobility!
Soline: A ten-year plan is not a publicity stunt. It is a reflection on the long term which will allow, I hope for it, a thorough work on all the proposals and the reflections which we had. We cannot reform the training of doctors in three years, but in ten. We can believe it.
Jean-Noel: The first thing for me was that the law evolves to respond to situations that are experienced in an unbearable and critical way.
@Stephane: In a state that calls itself secular, has anyone been shocked like me to have the presence at conventions of representatives of religions?
Jean-Noel: Being an atheist and open to active assistance in dying, I on the contrary appreciated knowing the position of the cults during a hearing. Our desire was both to represent all French people and to reflect on ethical questions on which we cannot do without any spiritual positioning.
@Non sapiens: Can we find out how many members of the convention went to spend time in a palliative care unit? Seeing things often changes ideas…
Soline: I organized visits to various palliative care services in Ile-de-France for at least 40 conventioneers during convention weekends. In addition, the Cese sent us certificates allowing us to go to the regions to visit the structures and meet the professionals. The interest of these meetings was to have a privileged time with a team of caregivers. Each time we stayed late at night to hear them and understand their point of view.
Jean-Noel: At least 70% of conventional members have visited palliative care services (USP, mobile team, etc.). This touched me a lot, at a time when I did not yet have a position. This led me to listen even more to the testimonies of people asking for active assistance in dying (AAM).
@Arno84: Hello, palliative care physician, reading the report, I wondered how active assistance in dying could be implemented in practice. That is to say: where? By who ? How ? THANKS.
Jean-Noel: We have thought about the conditions of access, the possibilities of support, but we cannot substitute ourselves either for the public authorities, which will put it in place if the law changes, or for the care units.
Soline: For my part, I hope both that, in the case of a sick person, there is support in palliative care before authorization for AAM, so that everything has been done on the issue of suffering and loneliness. On the other hand, in order to preserve palliative care and the teams, it seems to me necessary that AAM be offered in a different service and well dissociated from palliative care, in order to maintain patient confidence in the teams.
@Marc: Are you saying that people practicing AAM would not be trustworthy?
Soline: That’s not what I meant, sorry. Currently, some people may be afraid of palliative care, because they associate it with the idea that they will be forced to die. I simply want to preserve these services, which are places of support for life above all.
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@A young person who thinks about the future: Hello, will this help at the end of life only be conditional on excruciating suffering or inevitable death? Personally, my wish is to end my life if I lose a significant part of my motor or intellectual faculties (in the event of an accident or old age). Will this be possible or will I have to go to Switzerland or even do it myself?
Jean-Noel: The majority of us are in favor of an AAM with conditions. We have thought a lot about the conditions that can open up to this and we believe that the request must only be that of the persons concerned. Other conditions seem crucial to us, such as discernment and pathologies. Nevertheless, there was no consensus on the opening for minors and psychiatric and mental illnesses. We do not hope that you will have to apply for an AAM, but we hope that you will soon have this right.
@Saturday: No matter what people say, there are not palliative care services in all medical establishments. Personally, if I’m not afraid of death, I have a visceral fear of suffering as a whole (physical, psychological, etc.). It’s the fear of being coerced into pain or addiction that makes me need an exit plan.
Soline: This is where the announced ten-year plan is real good news. I hope that this will allow a real development of palliative care and a real distribution on all the territories. Living in the countryside, this is a question to which I was particularly sensitive.
@Euthanasie The cobblestones that lead to hell: Have the conventional studied the case of Canada?
Jean-Noel: We heard from Quebecers, but also from the Swiss, Belgians, Dutch and someone from Oregon [Etats-Unis]. Some models spoke to us more than others. In Canada, case tracking [le contrôle des procédures] is done post-mortem, which seems unacceptable to us. We have observed the choices of other countries in terms of modalities (either euthanasia or assisted suicide, or both), their conditions of access… There is a statistical point that has marked many of us, it is the relatively stable percentage of applications in all these countries.
@pseudo: Regarding the “right to die with dignity”, my mother had decided that in her time. The simple fact of knowing that Belgium accepted her wish had relieved her. She died at home, relieved to have the right to die with dignity, without ultimately having recourse to it. To meditate. THANKS
Jean-Noel: For us, individual choice is important. The speakers have explained to us several times that the fact of having the possibility of accessing the AAM is enough for many to be reassured without asking for it. In Oregon, where only assisted suicide is allowed, 30% of people who have requested MAID do not buy the product, 30% buy it and do not use it, and only 40% go to end.
@Isa: Hello. The work of the convention seems to reflect the French position and its nuances. However, I am concerned about the very conservative side of our elected officials, particularly in the Senate, who have been blocking on these subjects for years and always seem to be on the line of sticking to palliative care. I hope that we will finally allow the French to choose their end of life in case of suffering. Bravo to this convention for its work.
Jean-Noel: We hope to be heard. Whether it is the Convention members who are against, with the development of palliative care, and those who are for, with a concrete and clear evolution of the law. In my eyes, the Claeys-Leonetti law had many qualities, but avoided the main subject, which was to give the right to leave to those who wanted to and who were experiencing pathological situations where death seemed to them the only way out.
@elisabeth: Why not citizens’ conventions on economic subjects, such as pension reform or the return of the ISF?
Soline: The principle of a citizens’ convention is a strong exercise. It gives a group of citizens the means to train, get information and understand the complexity of a subject. We would love to be the start of a long list (eg immigration).
Jean-Noel: I arrived quite skeptical about the possibility of producing collective intelligence in the context of drawing lots and I came away convinced of the success of the convention. I want to see this democratic and civic model develop and prosper.