Citizens' assembly on assisted dying in France

08. December 2022
Rike / pixelio.de

A citizens' assembly on the subject of assisted suicide is running in France since December 9, 2022. President Emmanuel Macron had promised in his election campaign to legalise assisted dying or assisted suicide under certain conditions, similar to Belgium or Switzerland. "I am convinced that we have to do something because there are inhumane situations," he said. By mid-March 2023, the citizens' assembly is to formulate recommendations on this controversial issue.

The citizens' assembly is organised by the Conseil économique, social et environnemental (Economic, Social and Environmental Council, CESE), the third chamber of the French parliament. Experts are to provide the participants with the necessary information. The assembly with 185 participants is compiled according to the criteria of age, gender, education, place of residence and occupation in such a way that it represents a reflection of the population. The youngest participant is 20, the oldest 87 years old.

To recruit participants for the citizens' assembly, the market and opinion research institute Harris Interactive called randomly generated telephone numbers (85% mobile phones and 15% landlines) and invited those called to take part in the assembly.

Governance committee appointed

To steer the citizens' assembly, the CESE has appointed a Governance Committee, chaired by CESE member Claire Thoury, which includes CESE members, members of the National Consultative Ethics Committee, a philosopher specialising in health ethics, a member of the National Centre for Palliative and End-of-Life Care, experts on citizen participation and citizens who took part in the national climate assembly. This governance committee is responsible for ensuring the methodological monitoring of the citizens' assembly and for monitoring the principles of transparency and neutrality. It will meet weekly until the end of March 2023.

In total, the assembly members will discuss the issue of assisted dying with each other in nine three-day sessions. The CESE pays the assembly participants an expense allowance of 2,500 euros gross for their work. In addition, lost working hours are compensated with 11 euros per hour. Transport, accommodation and catering costs will also be covered, and a childcare allowance will be introduced.

Information for assembly members

The National Centre for Palliative Care and the End of Life (Centre national des soins palliatifs et de la fin de vie, CNSPFV), a public institution under the Ministry of Health, has compiled a comprehensive information package for assembly members. One hundred pages of patient stories based on real cases are included to enable participants to familiarise themselves with the existing legal framework. The information is also intended to help them understand terms such as living wills, "unreasonable persistence" in patient treatment and refusal of treatment, and to explain the organisation and practice of patient care.

In addition, there is basic information such as key figures and infographics, a historical timeline, an overview of legislation in other countries and information on drug treatment. In addition, the assembly participants receive internet links to important sources such as legal texts, statements and reports "The whole thing is intended to form a documentation basis that is as objective and neutral as possible, which serves as a common thread for the moderation of the working groups," explains Giovanna Marsico, Chair of the CNSPFV.

Discussions with experts and caregivers

Citizens' assembly members can also talk to experts such as former MP Alain Claeys, who co-authored the end-of-life law passed in 2016. There are also plans to hear from experts such as the National Ethics Advisory Board or international experts who will explain the rules that exist in their countries.

In addition, assembly participants will be able to exchange views with caregivers in the broadest sense - doctors, but also nurses or nursing assistants - and caregivers of terminally ill patients who represent their everyday lives.

Recommendations "serve to inform the government"

In January and February 2023, the randomly selected citizens deliberate on what they have heard and their questions and opinions about it. In March 2023, the assembly formulates its recommendations. The assembly process is designed together with the citizens. Participants have the option to adapt the work programme by listening to a specific expert or organisation, or even organising a visit to a health facility or abroad.

According to Prime Minister Elisabeth Borne, the recommendations of the citizens' assembly will "serve to inform the government". She assures that participants will be "informed of the follow-up to their work" and "informed of the consideration of their deliberations and recommendations". Unlike the 2020/21 climate assembly, the Citizens' Assembly on assisted dying does not have a legislative committee to mould the assembly proposals into law. "The 150 citizens do not have the task of writing the law," says the CESE.

Referendum on recommendations?

During the presidential election campaign, Macron had promised to "submit to the National Assembly or the people the decision to complete the path that is recommended". It would thus also be possible to hold a referendum on the assembly's recommendations on assisted dying after its conclusion.

In parallel to the deliberations within the citizens' assembly, debates are also organised in the regions of the country to reach out to all citizens and give them the opportunity to inform themselves and identify the challenges associated with assisted dying. In addition, the government also exchanges views on the issue with MPs and senators. By the end of 2023, this should result in clarifications and further developments of the legal framework.

"Serene and informed debate"

"The debate on this delicate subject, which must be treated with great respect and caution, must give each of our fellow citizens the opportunity to consider the subject, to become informed, to appropriate the common reflection and to seek to enrich it",  reads a press release from the Élysée Palace. "The necessary time will be taken, and all guarantees must be given to ensure the conditions for an orderly, serene and informed debate."

Although there is broad support among the parties in France for allowing assisted dying, very conservative MPs and the Catholic Church continue to oppose it. Opponents of assisted dying, for example, consider palliative care in France to be too inadequate to allow assisted dying. Palliative medicine combats the effects of life-shortening illnesses.

"A major boundary crossing"

Among the critical voices is Jean Leonetti, a doctor and co-author of the current law. "I am in favour of the debate itself, because death is a taboo in the Western world," he said. But assisted dying, he said, was a major boundary crossing. He also criticised the fact that the answer had already been decided before the citizens' assembly began its work: The President had already promised a corresponding law.

The Council of Christian Churches in France (CECEF) published a joint declaration on 5 December 2022. In it, the French representatives of the Catholic, Protestant and Orthodox faith communities write: "The dignity of a human society consists in accompanying life until death and not in facilitating death." They emphasise the attention that must be paid to the "person himself in his dignity, his unique and inestimable value". It is a matter of "taking care of him in an attitude of compassion, listening and benevolence".

"Man is a relational being," it continues. The freedom of the individual should not be confused with individualism. Particular emphasis is placed on the concept of solidarity and the interdependence of people in society. No one is the sole owner of their life; their decisions also count for others.

Current regulation

Today, the Claeys-Leonetti law provides the framework for the end of life of terminally ill people in France. The law, passed in 2016 after an initial version in 2005, prohibits assisted suicide, but allows for "deep and continuous sedation until death" for terminally ill people with very severe suffering whose life prognosis is in danger "in the short term".

The law provides for the discontinuation of treatment in cases of "unreasonable obstinacy": At the patient's request, treatments can be "discontinued" if they "appear unnecessary or disproportionate or have no effect other than to maintain life artificially". If the patient cannot express his or her will, the decision must be made "collegially" by the doctors.

Ethics Council: "Allow assisted dying"

In a statement published on 13 September 2022, the National Ethics Council recommended allowing active assisted dying, but "under certain strict conditions". A new regulation of the law on the end of life must be inextricably linked to a strengthening of palliative care and must follow certain ethical criteria. According to the Ethics Council, this option should be open to persons of full age who suffer from a serious, incurable disease that causes therapy-resistant physical or psychological suffering and leads to death in the medium term. The wish for active euthanasia must be expressed by a person who has autonomous decision-making capacity and who expresses his or her wish in an informed and repeated manner.

However, the Ethics Council also sees an inequality if those who are physically incapable of these conditions fall outside the scope of the law: "The Council leaves it to the legislature to determine the most appropriate approach to regulating these situations when addressing this issue," the statement reads verbatim. Eight members of the Ethics Council expressed a reservation on the council's statement.

Extending end-of-life choice supported by public opinion

Extending end-of-life choice is consistently supported by public opinion in France. In February 2022, 94% of people polled in France said they were in favour of legalising assisted dying for people experiencing extreme and incurable suffering and 84% were in favour of legalising assisted suicide. 

According to the National Institute for Demographic Studies (Ined), there are between 2000 and 4000 cases of illegal assisted dying every year, while tens of thousands of people use it abroad.

Jersey Citizens' Jury supports assisted dying

On the British Channel Island of Jersey, a citizens' jury had voted overwhelmingly in spring 2021 to change the law on assisted dying. 78.3 percent of the jury participants voted in favour of allowing assisted dying for adults under certain conditions. However, strict rules should be followed. A majority of 69.6 per cent also believed that assisted dying should be available for people with a terminal illness or unbearable suffering. 22 per cent were of the opinion that this option should be limited to terminally ill people.

On 24 November 2021, the island's parliament had approved the legalisation of assisted dying in principle. In 2022, a further debate on the procedure and safety rules is to take place. If these proposals are supported, a draft law could be debated and voted on in 2023.

Second national citizens' assembly in France

The Citizens' assembly on assisted dying in France would be the second national randomly selected assembly in the country. In June 2020, a 150-member climate assembly, also convened by President Macron, had adopted 149 recommendations. These included far-reaching proposals for the economy, transport, housing, trade and food in a 500-page citizens' report. With the proposed measures, the country's CO2 emissions should be reduced by 40 per cent by 2030. Critics had complained that not even ten percent of the recommendations of the citizens' assembly would be implemented.

Background