Problems and Purpose

The president of France, Emmanuel Macron, has announced on September 13, 2022 that a national Citizens’ Assembly will take place in order to ensure more clarity and insight on the following question: "Is the framework for end-of-life care suitable for the various situations encountered, or should any changes be introduced?" [1]

The participants of the citizens assembly on assisted dying will have to carefully study the question through a scrutinised analysis of the available set of information on assisted dying provided by the ‘Centre National des Soins Palliatifs et de la fin de vie - CNSPFV”. It is a public institution under the ministry of health. The assembly members will discuss with national experts, in particular professionals like the palliative care teams who are regularly confronted with end-of-life situations, in their practice and daily lives. Also international experts who will bring their countries legal framework on the table. This organised framework will allow a profound debate on different aspects of the question through 9 work sessions. At the end, it will enable the citizens of the assembly to construct a consensus that entails diverse perspectives on this sensitive matter. 

This assembly will primarily serve the government to take the final decision say the prime minister Elisabeth Borne. It is an informative set that will allow the government take the right decisions on assisted dying and consider a possible evolution of the Claeys-Leonetti law of February 2026 by the end of 2023.

Background History and Context

In France, the fight for the right to die with dignity, without suffering, dates back to more than forty years. It first started in April 1978 as the Senator Henri Caillavet (Democratic Left, Lot-et-Garonne) introduced a suggestion for a law on medical assistance to die [2]. This was a mandatory step in the history of euthanasia in France as it triggered many other initiatives like the creation of The Association for the Right to Die with Dignity also known as “Association pour le Droit de Mourir dans la Dignité- ADMD” in 1980 by the doctor Pierre Simon and the writer Michel Lee-Landa. It is an organisation launched After the publication of an opinion piece entitled "A Right", in Le Monde on November 17th, 1979, in which Michel Lee Landa claimed "the freedom to die with dignity, at the right time, according to one's own style" [3]. It essentially “ Advocates for every French woman and man to be able to choose the conditions of their own end of life, in accordance with their personal beliefs of dignity and freedom” [4]. In this perspective “The ADMD aims to obtain a law that legalizes euthanasia and assisted dying, and ensures universal access to palliative care, to be passed by Parliament” [4]. In 1986, the “Circulaire Laroque” appeared and was considered as the reference text that gave a legal basis for the emergence of palliative care in France. The Laroque circular outlined the fundamental principles of palliative care, such as taking into account pain, mental suffering, and quality of life of patients at the end of life, as well as respecting their autonomy and dignity. It also recommended the establishment of a comprehensive and coordinated care approach for patients in the terminal phase, involving collaboration between different healthcare professionals and the use of trained volunteers. After the Laroque circular, the first unit of palliative care was created in Paris (USP) by Dr. Maurice Abiven at l'hôpital international de la Cité Universitaire. Straight forward, the health professionals together with accompaniment associations created the French Society of Accompaniment and Palliative Care (SFAP) in 13 October 1989 [5]. The year 2002 was marked with a introduction of Kouchner law, it is a legal framework that dictates the patient’s right for access to information, which is necessary for their free and informed consent, and makes it mandatory to fight against pain. This law was the result of many cases that have received media attention, namely the Perruche case starting from 1989 and the Christine Malèvre case in 1998. Many mediated cases have created intense debates as regard to assisted dying, Starting from the Vincent Humbert case in 2000 [6] who sought “the right to die” from the president Jacques Chirac. The young man died in September 24th, 2003 with the help of a doctor claims his mother Marie Humbert. The case of Laurence Tramois and Chantal Chanel [7], a doctor and a nurse, judged in the court for the crime of assisted death of a patient who was in the terminal stage of cancer. To support them, the doctor Denis Labayle launched a petition entitled “We, healthcare workers, have assisted patients in dying” in which he gathered more than 2000 signatures and appeared for the first time in April 2nd, 2007. Following this case, another one that created debate among the public opinion, Chantal Sébire has requested assisted dying, two days after the court of Djon refused her demand she committed suicide. In 2015, the doctor Bonnemaison was sentenced two years of suspended prison sentence for causing the death of a terminally ill patient [8]. In February 2016 the establishment of the Claeys-Leonetti law. "The law strengthened the right of access to palliative care, which was established in the law of June 9, 1999. It provides advance directives and the designation of a trusted person, to allow our fellow citizens to express their wishes. It clarified the conditions for ending treatment under the refusal of unreasonable obstinacy, reaffirming the patient's right to stop any treatment, to benefit from deep and continuous sedation until death when the short-term prognosis is engaged, by placing the patient at the center of the decision-making process by making their advance directives binding on the physician. The law establishes rights in terms of access to palliative care and end-of-life support, and sets the framework for the collegial procedure and medical decision-making.The advance directives have become the privileged expression of the will of a patient who is unable to express it, and are now binding on physicians. This evolution of the law regarding advance directives and their enforceability against physicians is the most significant one" [9].

The two laws in France regulating euthanasia currently are 2002 law on the rights of patients, and the Clayes-Léonetti law from February 2, 2016, which focuses specifically on the rights of patients who are nearing at the end of life. Ever since, many attempts to improve the legislative framework regulating assisted dying have been done by human rights activists and French citizens. In his electoral campaign the current president Emmanuel Macron promised a reform of the French law regulating euthanasia. He eventually announced on September 8, 2022 the launch of a citizens' consultation on end-of-life[10]. It would be the second national randomly selected assembly in the country after the Climate assembly held in 2019 and 2020.

Organizing, Supporting, and Funding Entities

The Citizens’Assembly on assisted dying was organised and financed by the Economic, Social and Environmental Council also known as Le Conseil Économique, Social et Environmental CESE in French. The CESE is a governmental entity that has an advisory role to the French Government and the Parliament, it participates in the development and evaluation of public policies in its areas of competence[11]. The CESE defines itself as “ a democratic expression of civil society that takes action. It bases its work on listening, dialogue, and seeking demanding consensus to respond to today's and tomorrow's challenges and to enlighten public decision-making.”[11]. Since 2021 reform, the CESE introduced new missions that allow the citizens to take part in the decision making and help in shaping democratic proposition. These enrich the CESE work and provide better recommendations to the Government. They eventually organise citizens’ assemblies on various public matters. The last one being the CA on end of life in France. The CESE devoted a total budget of 4,2 millions euros to successfully deliver this mission. It also designated a Governance Committee to pilot this initiative. Chaired by Claire Thoury, a member of the CESE and composed of:

• Six members of the CESE
•  Two members of the Comité Consultatif National d’Éthique
• A philosopher specialised in health ethics
• A member of the Centre National des Soins Palliatifs et de la Fin de Vie
•  Two professors-researchers who are experts in citizen participation.
• Two citizens who have already participated in the Climate ’Assembly. 

The governance committee has pivotal role in designing the structure and the methodologies to adapt in order to guarantee the smooth running of the CA. It would make, through its decisions, the debates as effective as possible. Overall, the Citizens Assembly on assisted dying consisted of six main bodies. Members of the Assembly, which is a total number of 185 randomly selected citizens. The strategical and operational organisation which entails the governance and the steering committees. The operational implementation, it had two external parts, the one in charge of random selection. It recruited the members of the assembly based on the criteria stated by governance committee. The second one has the main responsibility of animating the debate and consisted of facilitators who do follow collective intelligence methods to successfully moderate the assembly sessions. A college of warrantors, it has four international members who supervise and evaluate the Citizens’Assembly, they make sure it respects the essential principals of an assembly (sincerity, equality, transparency, respect of citizen’s word). A work support entity, it comprises experts that served in clarifying the End of Life framework in France and answer citizens questions on this matter and fact-checkers who verify the truthfulness of facts for citizens. Finally, neutral observers, most of the time researchers who have interest in the Assembly.

Participant Recruitment and Selection

The members of the Assembly were recruited on the basis of a random selection. Thus, the participation was not open to all. The CESE mandated Harris Interactive, a marketing research and opinion polling company which carries out both quantitative and qualitative studies using different methodologies (face-to-face, telephone, Internet) [12], to select citizens by lot. Thy generated a list of random mobile phone numbers and called them to prevent any potential abstention. The members constituted a minipopulus representing the French society. The recruitment was based on six criteria;

• sex
•  age: 6 age groups starting from 18 years old
• Urban typology: major urban centres, outer suburbs, rural municipalities..,
• region of provenance: This is a mandatory aspect of the assembly as it is national. Thus, it has to perfectly represent the French society.
• Educational level: 6 principal groups were defined representing the overall educational status of the French society
•  Professional occupation: The assembly has to reflect the diversity within the French society in the job market.

The CESE pays the assembly participants an expense allowance of 2500€. The lost working hours are compensated by 11 €/hour. Transport, accommodation and catering costs are covered. Childcare allowance is also included [13]. Also,

Special efforts have been made to address the needs of the most disadvantaged groups and people living in overseas territories, who may be harder to reach when it comes to recruitment.

Methods and Tools Used

The method of this collective intelligence process was citizens' assembly. Throughout the process, members were provided with materials and study ressources regarding the legislative framework on end of life in France and had the opportunity to listen to various experts. Additionally, citizens and interested organizations were encouraged to make submissions through the Convention website. To support the members in developing their proposals and ensuring their legal soundness, in-house experts were assigned to assist them. The selection of citizens was done randomly, with the CESE entrusting Harris Interactive with the responsibility of managing the participant selection process.

What Went On: Process, Interaction, and Participation

The Assembly on assisted dying constituted 3 phases, 9 sessions, and a total number of 27 hours. 

The first phase being: Phase of appropriation and meetings had two sessions, the first started on December 9th until December 11th 2022, and the second started on December 16th and finished the 18th. 

Session 1: The 9th, 10th, and 11th December 2022

The Friday, December 9th 2022: 

The first session of the Assembly on End of Life in France was organised by the Conseil Économique, Social et Environnemental (CESE) on December 9th, 10th and 11th, 2022. This session was intended to bring together the 185 citizens in order to help them become acquainted with each other and the subject of the Assembly. It was hoped that this session would create a fertile ground for deep and open debates in the future. The 9th of December was marked by the opening speech of Thierry BEAUDET, the president of the CESE and Claire THOURY the head of the governance committee of the Assembly, and finally the prime minister Elisabeth Borne. The speech was a call to action for the citizens to engage in the debates to come, and to help generate solutions to the issues surrounding End of Life in France. 

Claire Thoury has outlined the immense investment every citizen will be dedicating to the question of assisted dying in France. Accordingly, this will not only be an exhaustive experience of hard work and long debates, but also a chance to live the full democratic experience. The governance committee consists of 14 members and they are responsible for organizing the Assembly. This includes fixing the methodological framework, deciding on lot selection criteria, the big steps of the assembly, and insuring the smooth running of the Assembly by guaranteeing citizens’ rights to speak and to access necessary information. Moreover, their role is to insure the plurality of opinions and the accountability of the decisions taken by the Assembly. The Assembly has two important challenges to tackle; the sensitivity of assisted dying in France as a topic characterised with opinion polarisation and opposing points of views. To address these issues, the Assembly should bring together citizens and allow for inclusion and free debate. Also, it’s a subject that is both personal and collective. It is through personal experiences that different people get to learn on the end of life and will have to decide on its regard. The format of this topic constitues the second challenge and it can be perfectly assessed and resolved when relying on collective intelligence. 

The president of the CESE Thierry BEAUDET has reflected perfectly on the importance of democracy in resolving collective problems. Democracy does not only impact collectives, but also individuals as they learn how to listen, think, argue, and acquire skills necessary for everyday life. It is a practice that should not be limited to political life or the assembly, but to the daily lives of citizens as it is a principal of co-living and cohabitation. It is important that each member form an informed opinion and argue it with serenity and openness. This assembly is a reminder that the essence of democracy is participation. Without a democratic society, and the process of democratisation, democracy is rendered useless. By taking part in this national initiative, and engaging in this participative dynamic, the members of the assembly are taking part in the new democratic reform that the country has adopted. They will contribute to the infiltration and the deepening process of democracy in France. The success of this assembly will contribute to to reinforcing and solidifying the culture of co-construction and compromise in our fifth republic. 

The prime minister, Elisabeth Borne, acknowledges the significance of the Citizens' Assembly on assisted dying in the national debate surrounding end-of-life matters. This Assembly holds the responsibility of shaping government decisions through its conclusions and suggestions. The government is obligated to consider the outcomes of the assembly and share the results with the public. Apart from the Citizens' Assembly, numerous other entities, such as healthcare professionals, patients, and parliamentarians, are actively engaging in discussions and debates on end-of-life issues. These exchanges, which contribute to the parliamentary debate, enrich the decision-making process and inform the development of the legal framework for end-of-life care in France. To ensure coordination and impartiality, the ministers in charge of democratic renewal, Olivier Véran, and the minister in charge of the territorial organisations of healthcare profession, Agnès Firmin Le Bodo, have been tasked with overseeing these exchanges. The main question for debate is whether the existing framework for end-of-life care is suitable for various situations or necessitates changes. Considering these aspects, it is recommended that participants freely express their thoughts, doubts, beliefs, and experiences, and defend their opinions and convictions for the greater good.

Saturday, December 10th, 2022: 

During this day, the members were introduced the methodology they will follow throughout the assembly sessions. They were afterwards split into groups and had their first interactive working session. Following the group work, Mr. Alain CLAEYS has clearly introduced and explained the legal framework of end-of-life care in France. Followed by an intervention of Yaël BRAUN-PIVET, the president of the national Assembly. They both exchanged with the assembly members and tried to answer their questions by reflecting on their experiences in the French legislative scope. The second half of the day has been dedicated to institutional presentations by the National Center for Palliative Care and End-of-Life Care (CNSPFV), The National Consultative Ethics Committee (CCNE), and finally the Economic, Social and Environmental Council (CESE). At the end of the second day, groups have made some further exploration of the question and deduced initial problematics. 

Sunday, December 11th, 2022: 

It was the final day of the first session. In this session groups were given the floor to express freely on the end of life and had the chance to assist to a round table where they explore international positions regarding the end of life. 

Session 2: December 16th, 17th, and 18th 2022

The second session is the last session of the first phase which consisted of a round table with religion’ representatives along with exchanges and meetings with different parties that are in touch with the end of life situations such as healthcare professionals. The main goal of the session was to define the 10 crucial challenges that the members of the Assembly will work on in the next sessions.

On Friday, December 16, 2022, the assembly members convened for a round table discussion with representatives from various religious organizations. Present at the meeting were notable figures such as Mgr Marc ALRIC, the Bishop of Neamț and representative of the Assembly of Orthodox Bishops of France; M. Antony BOUSSEMART, President of the Buddhist Union of France; M. Chems-eddine HAFIZ, the Rector of the Great Mosque of Paris; M. Haïm KORSIA, the Chief Rabbi of France; M. Christian KRIEGER, President of the Protestant Federation of France; and Mgr. Laurent ULRICH, the Archbishop of Paris.

The following day, Saturday, December 17, 2022, the focus shifted towards engaging with healthcare professionals. Assembly members actively participated in discussions with doctors, nurses, volunteers, and other healthcare practitioners. Several healthcare organizations, including the National Council of the Order of Nurses, the National Council of the Order of Physicians, and the French Society of Accompaniment and Palliative Care (SFAP), among others, provided valuable insights during the session.

As the interventions and exchanges progressed, the citizens in attendance identified approximately twenty issues pertaining to end-of-life matters in France. Subsequently, they collectively prioritized ten pressing issues that warranted immediate analysis. These ten priority areas will be the primary focus of their work during the upcoming sessions, commencing on January 6, 2023.

Deliberation phase, it is the longest phase of the Assembly and consisted of four sessions, starting from January 6 until the February the 19. The Assembly members had to deliberate on the pre-defined challenges. 

Session 3: January 6th, 7th, and 8th, 2023

The objectives of the first session of the deliberation phase were clear and concise. It is the start of the debate, the members of the assembly had to thoroughly examine the challenges debate and propose their views in the matter and also represent their arguments. 

On Friday, January 6th, 2023, the focus of the day was primarily on appropriation and understanding. The assembly members were divided into small groups consisting of approximately 30 citizens. They participated in three workshops aimed at enhancing their comprehension of various aspects related to end-of-life discussions.

The first workshop centred around the appropriation of the deliberative phase, providing participants with an in-depth understanding of this crucial stage. Deliberative phase refers to a process wherein individuals or groups engage in thoughtful and reflective discussions to reach decisions or consensus on specific issues. This workshop aimed to familiarize the participants with key elements of the deliberative phase, such as active listening, respectful dialogue, and the exploration of diverse perspectives.

The second workshop focused on palliative care, delving into the quantitative aspects of end-of-life figures in France. Its objective was to help assembly members grasp the complexities surrounding end-of-life issues. It addressed questions such as the definition and objectives of palliative care, available support for patients receiving such care, and the when, where, and how individuals can benefit from it.

The final workshop explored the employed notions and vocabulary related to end-of-life discussions, providing clear definitions of terminologies used in the context. Following the group debates, there was an opportunity for an exchange with Olivier Véran, the Minister of Democratic Renewal.

Moving to Saturday, January 7, 2023, a round table on active dying assistance was led by Nicolas Prissette, accompanied by Jonathan DENIS, President of the Association for the Right to Die with Dignity (ADMD), and Claire FOURCADE, President of the French Society for Accompaniment and Palliative Care (SFAP). During this session, assembly members engaged in debates and shared diverse perspectives on the topic.

The final day of the assembly, facilitated by Cynthia FLEUTY, provided assembly members with exposure to the viewpoints of representatives from non-religious spiritualities. Notable individuals included Oscar BENITEZ, President of the National Commission on Bioethics and Health of the Grand Orient of France, philosophers Monique CANTO-SPERBER and André COMTE-SPONVILLE, and Amandine PICHEGRU, President of the French Federation of Human Rights, among others. Various themes, such as freedom, fear, suffering, and death, were discussed. Towards the end, group members summarized their opinions and perspectives on end-of-life based on the materials and interventions presented. Each group assigned a representative to present their views to all other assembly members.

Session 4: January 20th, 21st, and 22nd, 2023

The fourth session of the assembly commenced on January 20 with a round table featuring experts on euthanasia from various countries, aiming to provide citizens with insights into the legal frameworks surrounding end-of-life in different parts of the world. Théo BOER from the Netherlands, a professor and former member of the Dutch government's euthanasia review committee, Michel BUREAU from Quebec, president of the Commission on End-of-Life Care in Quebec, Joelle OSTERHAUS from Oregon, overseeing psychosocial services in a palliative care unit in Portland, and Francesca RE from Italy, a lawyer at the Luca Coscioni Association, presented their perspectives during this informative session.

The subsequent day involved healthcare professionals, representatives of patients, and their families sharing their personal experiences with the assembly members. They shed light on the suffering and harsh realities by describing the daily lives of patients and their caregivers. This was followed by a round table discussion with participants such as Jean-Jacques BONAMOUR DU TARTRE, former president of the French Federation of Psychiatry, Sidi-Mohammed GHADI, vice-president of France Assos Santé and patient expert, Francis JUBERT, member of the association Le LIEN and coordinator of home palliative care teams, Nathalie MAKA, member of the Solidarité Charcot Collective and president of the association Les Enfants de la SLAF, and Stéphane PICARD, an algologist physician and deputy head of the Palliative Care Department at GH Diaconnesses Croix Saint-Simon. The assembly members had the opportunity to deliberate and engage in debates regarding the subject alongside their fellow group members.The outcome of the fourth session was a total of 346 suggestions put forth by the assembly members. These suggestions served as preliminary solutions to address the previously identified challenges [14].

Session 5: February 3rd, 4th, and 5th, 2023

This session marked a significant milestone for the convention participants as they worked together in groups to express their opinions and take a clear stance on the issue of end-of-life.

The focus of the day was on the legal aspect of the question, prompting the discussion of key concepts. Régis Aubrey, president of the National End of Life Observatory and member of the National Ethics Advisory Committee (CCNE), participated in a round table and addressed the citizens' questions concerning deep and continuous sedation. His insights provided valuable information and clarification on this topic.

Moving to Saturday, the 4th of January, the participants were divided into six sub-groups and tasked with discussing four main themes. These themes included opening access to active assistance in dying, exploring the possible modalities of access to active assistance in dying in terms of decision-making, control, and organization, considering the possible forms of active assistance in dying, and rethinking end-of-life support while fully adhering to the current framework. Each group produced responses and potential solutions to the various challenges associated with these themes.

The final day of the session was significant as all 185 participants of the convention came together for a comprehensive debate. The aim was to collectively reach an answer to the question: "Should there be access to active assistance in dying?" This deliberation allowed for a thorough exploration of perspectives and ultimately sought to shape the direction and recommendations of the convention's outcome.

Session 6: February 17th, 18th, 19th

It represented the final session of the deliberation phase

On Friday, the 17th of January 2023, several important activities took place during the assembly regarding end-of-life accompaniment in France:

Firstly, the citizens formed work groups with the task of thoroughly studying the topic of end-of-life accompaniment in France. Their objective was to identify areas for improvement while considering the current situation. The citizens focused on various themes and key challenges, including the development of palliative care, respecting the patient's choice and will, ensuring equal access to end-of-life accompaniment, and advancements in research and development.

Following this, the working groups underwent a restructuring to contemplate the format of the final document of the Citizens' Convention. They were responsible for defining the structure of the summary document that would be presented to the government and the French citizens. The central question revolved around how to effectively express the opinions of the citizens. This question was crucial in creating a methodological map that would guide the convention participants in outlining the fundamental aspects of the writing and summarizing the extensive work conducted throughout the entire convention.

During an exchange session lasting one hour, the groups had the opportunity to share their findings and work on the following question: "What are the best ways to support people at the end of life?" This discussion allowed for the exchange of diverse perspectives and insights among the participants.

Lastly, at the conclusion of the day, each group representative presented their work on the final document format. This included considerations such as the writing style, the intended recipients, and the overall structure of the official document of the Citizens' Convention on End-of-Life.

On Saturday, the 18th of January 2023, the work continued, building upon the progress made on Friday. The citizens were divided into two working groups, each focusing on specific topics that were discussed and voted upon throughout the day.

Building upon their previous work, the citizens dedicated their efforts to further detailing their suggestions concerning various aspects related to end-of-life. These aspects encompassed the development of palliative care, the importance of respecting the patient's choice and will, the need for home support and care, the significance of information and education, ensuring equal access to end-of-life care and support, organizing effective end-of-life care pathways, allocating resources for research and development, and securing the necessary budgets for end-of-life care and support.

The citizens were tasked with identifying priority issues within these thematic areas. At the end of the day, on Saturday evening, the citizens participated in a voting process using a qualified majority (requiring more than 66% of favorable votes). As a result, 25 strong ideas emerged as the collective choices of the citizens, signifying the importance and consensus surrounding these concepts:

1. Ensure equal access to palliative care for everyone throughout the national territory
2. Strengthen palliative care at home and in nursing homes, particularly through mobile palliative care teams
3. Reinforce initial and ongoing training for healthcare professionals on end-of-life and palliative care
4. Strengthen public awareness campaigns and education
5. Provide the necessary financial and human resources to ensure access to palliative care for everyone, whether in facilities or at home and throughout the country
6. Respect personal free will and volition
7. Strengthen the healthcare system, particularly by deploying healthcare personnel throughout the territory to provide quality care for everyone
8. Strengthen and support the role of caregivers
9. Ensure a collegiate decision-making process
10. Reinforce the use of advance directives and the appointment of a trusted person
11. Develop specific training programs for nursing homes
12. Promote end-of-life care at home
13. Develop a personalized care and end-of-life pathway adapted to each patient and the specificities of their illness
14. Develop public and private research and development in the field of end-of-life care, particularly on refractory suffering and ways to address it
15. Encourage and facilitate the writing and use of advance directives and the designation of a trusted person, using all possibilities offered by digital technology
16. Strengthen psychological support for all stakeholders and encourage a multidisciplinary approach to patient care
17. Eliminate the T2A (fee-for-service matrix) for palliative care and value the notion of time spent with patients by all staff members
18. Increase the presence of psychologists and training in psychology for healthcare professionals
19. Improve working conditions for palliative care personnel to enable better job performance, improve their value, and make them more attractive
20. Promote the university pathway for palliative care
21. Develop targeted research on palliative care
22. Establish proximity territorial projects between stakeholders to better meet the needs of the population
23. Widely distribute end-of-life information kits in all locations where information and awareness are possible
24. Implement additional resources for caregivers
25. Develop early palliative care.

After the sessions were successfully passed, follow-up debates were organized on Saturday 19 to provide an opportunity for citizens to further engage in discussions. These debates lasted for three hours, enabling participants to voice their opinions on various topics that had been voted upon at the end of each debate. In one particular session, which saw 167 citizens in attendance, the question posed was, "Does the framework for end-of-life support meet the different situations encountered?" Out of the participants, a significant majority of 140 individuals answered in the negative, indicating dissatisfaction with the existing framework. Meanwhile, 21 respondents expressed their agreement, while 6 individuals chose to abstain from taking a stance on the matter.

Restitution phase: During this phase, the convention participants will be required to provide a comprehensive overview of their research on the end-of-life legislative framework in France and present recommendations. This segment of the convention will be divided into three sessions, the 7th, 8th, and 9th session. Each lasting three days. 

Session 7: 3rd, 4th, 5th of March

This is an opening session for the harmonisation phase and the restitution of the results

The first day of the program primarily served as an overview session, providing participants with a comprehensive understanding of the entire weekend's agenda. It also offered an opportunity to recapitulate the progress made in previous sessions. Specifically, the focus was on highlighting the 25 strongest ideas related to end-of-life support that has been voted upon.

One of the highlights of the day was the audition on "Judgement and Mental Illness." This session allowed participants to delve deeper into these crucial aspects and seek expert insights. Prominent professionals such as Saena Bouche (Psychiatrist), Jacques Grill (Pediatric neuro-oncologist), and Sophie Moulias (Geriatrician) were present to share their knowledge and expertise. Attendees were encouraged to ask questions and engage in meaningful discussions on the subject matter with these respected specialists.

On Saturday 4th, 2023 Participants to deduced the suggestions they wish to make from the 25 strong ideas on end of life they voted for. These are related to the improvement of the current legal framework one the accompagnement of end of life. The suggestions have to be mainly around nine themes: 

• The respect of the patient’s choice and will
• Support for home care 
• Guaranteeing the necessary budgets 
• Improving the palliative care 
• Equal access to the end-of-life support 
• Public access to information 
• Training for healthcare professionals 
• Ressource allocation to R&D to better manage suffering and invent treatment. 

These suggestions will be subject to majority voting the following day. The Convention members had to also decide the format of the final document. Every participant to suggest the plan they wish to apply in the summary document. At the end of the day, groups who wish so suggested and and explained the plans they thought of collectively. 

On Sunday, May 5th, 2023, the focus shifted towards voting as it marked the final day of the program. Participants were given the opportunity to vote on the suggestions they had put forward to enhance the existing framework for end-of-life support. The results revealed that a significant majority, 82% of the voters, agreed that the current accompanying framework was inadequate for addressing different situations effectively. Furthermore, an overwhelming 97% of the participants expressed the belief that the current framework needed to be further developed.

Throughout the duration of the program, a total of 67 suggestions had been presented to improve the state of end-of-life support in France. These suggestions aimed to address the shortcomings and challenges faced in this area, providing valuable input for future improvements and reforms.

Session 8: 17th, 18th, 19th March:

This session was mainly to write the final document. 

On Friday, March 17, the members of the Convention had a chance to engage in constructive discussions and put forth their arguments and proposals regarding end-of-life issues. They started by forming opinion groups to explore the various positions expressed within the Convention, allowing them to comprehend the wide range of perspectives regarding the potential expansion of active euthanasia. Following the group work, a plenary session was arranged, during which every member of the Citizens' Convention presented and explained the different conceptual frameworks that had been developed, resulting in a total of 19 models being put forward.

On Saturday, March 18th, during the morning session, dedicated efforts were made to draft specific segments of the ultimate document, particularly focusing on the nuanced range of opinions prevailing within the Convention. By forming opinion groups, the Convention members were able to compose sections pertaining to the potential implementation of active assistance in dying and the associated modalities. These groups encompassed various stances, including those opposing the opening of active assistance, advocating solely for assisted suicide or euthanasia, proposing assisted suicide in specific exceptional cases, or endorsing both assisted suicide and euthanasia.

In the subsequent afternoon session, the collective attention shifted towards drafting the portions that were common to all participants of the Citizens' Convention, irrespective of their individual positions on active assistance in dying. Additionally, meticulous attention was devoted to crafting the introduction, conclusion, and manifesto.

Following a day dedicated to generating the segments constituting the final document, the Convention members diligently engaged in a thorough review process. Within the Hypostyle hall, the comprehensive set of sections and proposals were prominently displayed on large panels, inviting collective scrutiny. Each member had the opportunity to suggest necessary revisions to the wording, while rapporteurs, assigned the responsibility of incorporating these modifications, were available to clarify the rationales and deliberations underpinning their specific areas of focus. This collaborative and trust-driven endeavour culminated in the completion of a comprehensive 184-section document, attesting to collective intelligence and concerted efforts within the Convention. Subsequently, the rapporteurs convened to assimilate the feedback received from the members of the Citizens' Convention regarding the final document's various sections. This harmonisation phase entailed incorporating multiple suggestions while maintaining a holistic perspective of the Convention's work and the overarching aims of the final document.

19th march was the majority vote day, the citizens had to vote for the following:

• Position on the potential opening of active assistance in dying
• Modalities of active assistance in dying
• Pathway of active assistance in dying
• End-of-life models proposed by opinion groups

Following Session 7, during which the Citizens' Convention had formally put forth its recommendations aimed at improving the existing framework of end-of-life care and bolstering palliative interventions, acknowledging the limitations of the current system in addressing all circumstances, Session 8 witnessed the unequivocal endorsement by the Citizens' Convention for the implementation of active assistance in dying, albeit subject to specific conditions.

Following are the thorough vote results: 

Position on the potential opening of active assistance in dying: 

"Should access to active assistance in dying be opened?" (164 voters):

• 75.6% answered "yes".
• 23.2% answered "no".
• 1.2% abstained.

"Should the possibility of access to active assistance in dying be opened to individuals with condition(s)?" (163 voters):

• 70.6% answered "yes".
• 14.7% answered "no".
• 13.5% indicated opposition to the opening of active assistance in dying.

 Modalities of active assistance in dying:

• The opening of active assistance in dying in the form of assisted suicide alone received 9.8% of the votes.
• The opening of active assistance in dying in the form of euthanasia alone received 3.1% of the votes.
• The opening of active assistance in dying in the form of assisted suicide with exceptions for euthanasia received 28.2% of the votes.
• The opening of active assistance in dying in the form of either assisted suicide or euthanasia at the individual's choice received 39.9% of the votes.
• 18.4% of citizens indicated opposition to the opening of access to active assistance in dying.
• 0.6% of citizens abstained.

Regarding the topic of assisted suicide, the following propositions were subject to voting:

1. General Reflection: The proposal is to present Active Assistance in Dying as an integral part of a comprehensive care and support pathway, which should be coordinated with the existing Palliative Care pathway.
2. Pathway Steps

Expression of the Request:

• The patient should initiate the request.
• Access to information and advance directives should be provided through the AMELI account.
• If the patient is unconscious or unable to communicate, the request can be made through a designated trusted person or by reviewing advance directives.
• A preliminary request must be made to a physician or another healthcare professional.
• A time interval should be observed between the preliminary request and the official request.
• The request is expressed to a physician (either a general practitioner or a hospital-based physician), who listens to and considers it for the establishment of appropriate support, even if it does not ultimately lead to the act.
• The request can be made to individuals other than general practitioners.
• The official request must be reiterated after a period of reflection.
• The patient's (reiterated) request should be documented in writing or recorded in an archivable format as evidence.

Medical and Psychological Support:

• Support should commence from the preliminary request stage.
• The designated trusted person should be informed of the request.
• Family involvement should only occur upon the patient's request, and the patient should have the option to inform their loved ones about their request.
• Support should include one or more medical appointments and psychological follow-up.
• Psychologists and psychiatrists may be involved in the support process.
• Patients should be given the opportunity to explore alternative therapeutic options.
• Psychological support should be provided to both the patient's close ones and the healthcare professionals involved in the provision of Active Assistance in Dying.
• Patients should be informed about the precedence of assisted suicide over euthanasia.
• Patients should receive information about the steps involved in the process and the consequences of their decision.

Assessment of Capacity for Discernment:

• An evaluation of the patient's capacity for discernment should be conducted before validating the request.
• The evaluation of capacity for discernment should take place between the initial request and the act's realization, as part of the overall pathway.
• The assessment may consider the wishes of the family and healthcare providers, but such consideration should remain optional.

Validation of the Request:

• Active Assistance in Dying should only be offered as a last resort, after exhausting all other available options, including treatments and support.
• A collegial and interdisciplinary procedure should be established to validate the conformity of the request and finalize the decision.
• The collegial procedure should involve other professionals, such as medical-social workers, or an approved third party (e.g., notary or professional in social and legal affairs).
• The validation of the request is contingent upon compliance with a set of criteria outlined in the "model for accessing Active Assistance in Dying."

Realizatdion of the Act:

• The presence of at least one healthcare professional is required during the act.
• Healthcare providers should have the right to exercise conscientious objection and abstain from participating in the act's procedure.
• In case of conscientious objection, the professional or their institution should facilitate the referral of the patient to another willing professional.
• A list of professionals who are willing to participate should be provided to patients in the event of conscientious objection.
• The act must be performed by the patient themselves.
• Patients should have the option to choose euthanasia over assisted suicide without needing to restart the entire pathway.
• The patient should have the freedom to select the location (medical facility, home, nursing home, etc.).
• The patient retains the right to change their mind at any time until the end.
• The presence of loved ones during the act is not mandatory but is permissible.
• The dispensing of the lethal substance should be contingent upon the validation of access criteria and the procedure

Influence, Outcomes, and Effects

At the end of 9 working sessions and 27 days of debate, the 184 members of the citizens’ assembly on assisted dying submitted their report on April 3rd, 2023 to President Emmanuel Macron. The report consists of a total of 154 pages of analysis and proposals [15]. A majority of participants express support for the development of palliative care and conditional legalization of assisted suicide and euthanasia. The President has announced that a bill will be presented by the end of the year. This convention will serve as a foundation and point of reference for the government and will allow larger debates.

Analysis and Lessons Learned

Although the Citizens’Assembly on assisted dying has rigorously reflected the French society through selection by lot, it lacked the fundamental democratic good of Inclusiveness. Embodying a perfect democratic process consists of allowing each and every citizen to take part in the process. The logic is that every single citizen, regardless of their gender, age, class, religious or ethnic background, should be able to engage in this process. However, this was not possible due to the high efficiency of the process as it was thoroughly framed and organised by the CESE. The mobilised ressources and the human ressources costs could not allow unconditional participation. As this particular initiative was launched by the French government in collaboration with the CESE, it was clearly intended to be a mandatory basis for the government decision. The President has received the Assembly participants at the end of the process and has openly expressed his gratitude and willingness to introduce reforms as response to the citizens voice. Furthermore, the propositions and decisions taken by the Assembly members were all a result of many information sessions, and a long learning phase. To guarantee a high level of transparency. The CESE has launched the Assembly website where everyone can follow the advancement, check the ressources, and watch the integrity of the sessions. Overall, the French Citizens’Assembly on assisted dying has successfully mirrored what a rigorous collective intelligence process should look like. 

See Also

• https://participedia.net/case/7329
• https://participedia.net/case/6044
• https://participedia.net/method/4258

References

[1] https://conventioncitoyennesurlafindevie.lecese.fr/la-convention-citoyenne-sur-la-fin-de-vie-c-est-quoi

[2]https://www.senat.fr/leg/ppl11-735.html

[3]https://www.lemonde.fr/societe/article/2008/03/19/l-association-pour-le-droit-a-mourir-a-double-ses-effectifs-en-cinq-ans_1024964_3224.html

[4]https://www.admd.net/qui-sommes-nous/une-association-humaniste/quest-ce-que-ladmd.html

[5]https://sfap.org/rubrique/histoire-de-la-sfap

[6]https://fr.wikipedia.org/wiki/Affaire_Vincent_Humbert

[7]https://www.lemonde.fr/societe/article/2007/03/16/euthanasie-verdict-clement-au-proces-de-perigueux_883949_3224.html

[8]https://www.leparisien.fr/societe/euthanasie-le-docteur-bonnemaison-definitivement-radie-de-l-ordre-des-medecins-11-04-2019-8051112.php

[9]https://sante.gouv.fr/soins-et-maladies/prises-en-charge-specialisees/les-soins-palliatifs-et-la-fin-de-vie/la-prise-en-charge-palliative-et-les-droits-des-personnes-malades-et-ou-en-fin/article/comprendre-la-loi-claeys-leonetti-de-2016

[10]https://www.la-croix.com/France/Fin-vie-Emmanuel-Macron-confirme-lancement-dune-convention-citoyenne-2022-09-08-1201232279

[11]https://www.lecese.fr/sites/default/files/DPCESE_2021.pdf

[12]https://fr.wikipedia.org/wiki/Harris_Interactive

[13]https://www.buergerrat.de/en/news/french-citizens-assembly-supports-assisted-dying/

[14]https://conventioncitoyennesurlafindevie.lecese.fr/actualites/10-enjeux-prioritaires-de-travail-definis-par-les-citoyens

[15]https://conventioncitoyennesurlafindevie.lecese.fr/sites/cfv/files/Conventioncitoyenne_findevie_Rapportfinal.pdf

External Links

• https://www.buergerrat.de/en/news/french-citizens-assembly-supports-assisted-dying/
• https://conventioncitoyennesurlafindevie.lecese.fr/
• https://www.lecese.fr/
• https://www.la-croix.com/Sciences-et-ethique/Suicide-assiste-euthanasie-soins-palliatifs-mots-fin-vie-2022-12-09-1201245832
• https://www.lesechos.fr/politique-societe/societe/fin-de-vie-la-convention-dit-oui-mais-au-suicide-assiste-ou-a-leuthanasie-1921341

Notes