The submission of the report of the Citizens' Convention on the end of life on 3 April 2023 closed the six-month consultation period opened in October 2022 to "give each of our fellow citizens the opportunity to consider this subject, to become informed, to take ownership of the joint reflection and to seek to enrich it". Beyond the delicate issue of the changing law and active assistance in dying, the idea was also to give the French the means to appropriate the terms of the debate.

According to the October 2022 BVA Opinon survey, "The French and the end of life", half of the citizens feel poorly informed on this subject. They know little about mechanisms such as the system of advance directives (allowing each person to leave a document specifying their wishes) or the principle of the trusted person (who will accompany the patient during treatment).

At a time when a new stage in the debate is beginning with the announcement by the President of the Republic of a ten-year plan for pain management and palliative care and the "joint construction between the Government, parliamentarians and stakeholders of a bill on the end of life by the end of 2023", it is important to draw fully on the lessons learned from a very wide-ranging citizen's initiative. In addition to the great interest of the report of the Citizens' Convention on the end of life, it is a question of taking stock of the 245 debates organised by the ethical reflection spaces of the region.

Reflecting on the conditions for active assistance in dying

Particular attention must also be paid to audiences that have been traditionally little consulted on end-of-life issues, such as 18-34 year olds. This is why the Espace éthique Île-de-France has set up a reflection process with four schools - the Jeanne d'Albret high school in Saint-Germain-en-Laye, the Jehan de Chelles high school, and the Pierre-Gilles de Gennes and Henri IV high schools in Paris.

The aim was not to produce recommendations in four three-hour sessions, for a potential change in the law, nor to set up a representative panel of "young people", but to collect the participants' key points, go deeper into discussions with them on the themes chosen together, and build a public space allowing them to exchange arguments, agreements and disagreements synthesised in a report and mapping disputes.

Although the method of consulting high school students is different from that of the Citizens' Convention or other mechanisms implemented—transparent work with deputies and senators, opinions of learned societies, or meetings organised by regional ethical reflection spaces—it should not ignore them. This mosaic of approaches forms a global "deliberative system" that enrichens the public debate and makes it possible to reach a diverse public—medical students, elderly people in retirement and care facilities, carers, and elected representatives.

The members of the Citizens' Convention and the high school students who took part in the consultation of the Espace éthique (a spece to reflect on ethics) in the Paris region share the same observation: the lack of information among our fellow citizens on patients' rights and palliative care. Another point in common is a strong attachment to the health system and understanding of the law of 4 March 2002 on patients' rights and the quality of the health system. The question of respect for the patient's choices, their decision-making autonomy, their consent, and the concept of equal treatment are among the principles recalled by the participants.

However, while conventioneers emphasise first of all "the inequal access to support at the end of life" and the need to guarantee "access to palliative care", the high school students consulted preferred to focus on possible legalisation enabling active assistance to die in order to relieve intractable suffering, whether somatic or psychological.

Indeed, contrary to the arguments "for" and "against" euthanasia and assisted suicide that were debated at the Citizens' Convention—even if the conventioneers were mostly in favour of permitting active assistance in dying—the high school and university students at the consultation did not show any initial disagreement on active assistance in dying. No participant spoke out against it, even though the facilitators gave them the opportunity to do so on several occasions.

Building a disputes map

The debate then opened up on the criteria for access to active assistance in dying, on patients' rights, the role of doctors and their possible specialisation, the training needed to provide patients and families with the best possible support, the suffering that must be taken into account (for example somatic, psychological or existential) and the way in which this suffering is measured.

Thus, while the Citizens' Convention deals systematically with the conditions of access to aid in dying (medical conditions, nationality or age), high school students examine issues that are close to their hearts in greater depth: the possible access of minors or people with psychological disorders, the role of families in the patient's choice, the patient's capacity for discernment, the relief of psychological or existential suffering, or the risk of commodification.

On the basis of these reflections, the simulation exercise leads the students, like the conventioneers, to imagine a highly supervised course of care and support for people who request active assistance in dying, with psychological support, repeated consent, or the possibility of stopping the process at any time.

As we can see, it is not a question of stating definitive opinions. On the contrary, the disputes map, like the "spectrum of opinions" in the report of the Citizens' Convention, allows us to enter into the complexity of the debates and arguments that were exchanged. Deeply ethical questions were expressed:

• Should there be a specialisation of certain trained carers to carry out active assistance to die, or should all carers be able to respond to a request for active assistance to die within their services?

• Is active assistance in dying a continuity of care or the opposite?

• Should medicine move from the perspective of curing the patient to an accompanying role?

• How to assess a request for assistance in dying? Who judges that the request is legitimate?

These questions, as they were expressed, will not find "true/false", "good/bad", or "fair/unfair" binary answers, They open up a whole field of reflection on end-of-life issues as posed by the French in 2023. In this respect, we believe that these citizen consultation and consultation mechanisms are likely to structure the public debate and guide the political choices that may be made.

What remains of these debates is a wealth of questions that will have been pointed out by all participants, and a peaceful way of sharing our agreements and disagreements. As one participant in the high school consultation said, "this experience was indeed very enriching. I learned to discuss and reflect on a subject that I did not know at the outset and that I was able to learn more about. It was also interesting to take the time to listen to others and to be able to intervene at any time. We hope that the drafting of the law and its discussion will be informed by these debates

Sébastien Claeys, Associate Professor and Head of the master's degree in editorial advice, Head of public debate and communication at the Espace éthique Île-de-France, Sorbonne University

This article is republished from The Conversation under a Creative Commons license. Read the original article in French.