Draft law on assisted dying after citizens' assembly
Following a citizens' assembly, the French government presented a draft law on assisted dying on 10 April 2024. According to the bill, active assisted dying and assisted suicide will be permitted in France under certain conditions in future.
According to the draft law, the patient in question must be at least 18 years old, have French citizenship or be permanently and legally resident in France. In addition, there must be a prognosis that categorises the disease as incurable in the short to medium term. Furthermore, the patient must be "fully sane", which excludes patients with Alzheimer's disease, for example. In addition, a doctor who has not regularly cared for the patient must declare them "fit". If this is the case, the patient may inject themselves with the lethal dose. If the person is unable to do so, as is particularly the case for people with Charcot's disease, a third party can be authorised to carry out the procedure.
Citizens' assembly in favour of legalising assisted dying
The citizens' assembly on 2 April 2023 voted by a large majority in favour of legalising assisted dying. 75.6 percent of the participants voted in favour. The final report of the assembly with 67 recommendations was adopted with a majority of 92 percent. It was handed over to President Emmanuel Macron on 3 April 2023. By the end of summer 2023, he now wants to present a draft law to improve palliative care.
Just under a quarter of the assembly members (23.2 per cent) were against any possibility of assisted dying. Among those in favour, one part wants assisted dying to be understood as an absolute exception. Another part voted for freedom of choice between assisted dying and assisted suicide.
The citizens' assembly establishes important guard rails for the authorisation of assisted dying. For example, according to the assembly, there may be no assisted dying without the patient having received thorough assistance beforehand and being able to express his or her will at any time. "The person's capacity to judge is an essential prerequisite," the report emphasises. Details, however, remain unclear. What is to be done if a patient is no longer able to express his or her will? As there was no majority position on this, the citizens' assembly remains undecided on the issue.
"Current framework not appropriate"
The same applies to opening assisted dying or assisted suicide to minors. "Opinions remain very divided" on this issue, summarises the concluding text. The report, which also takes care to detail the minority positions against assisted dying, thus leaves much room for assessment by legislators, although there are far-reaching doubts about the current situation. The current legal framework for end-of-life care is not adequate.
However, the assembly participants do not only blame the current legislation for the bad situation. They also emphasised the concrete difficulties in accessing what the existing law provides, in particular a sufficient supply of palliative care. In this context, the citizens' assembly highlights the "alarming situation" of the French healthcare system.
Call for "profound changes"
The assembly members state that "the laws on end-of-life accompaniment are insufficiently known and applied in France today". They call for "profound changes". This applies to palliative care, but also to the training of professionals and information for all people.
78 per cent of assembly participants believe that doctors and nurses should be able to invoke a conscience clause not to actively provide assisted dying. If this clause is used, the patient must be referred to another professional.
Right to assisted dying and palliative care
The assembly members also propose that an "enforceable right to end-of-life care and palliative care" be enshrined in law and that the necessary funds be made available for this on the principle of "whatever it takes". In addition, research to better alleviate pain should be funded and the accompaniment of the dying by psychologists should be expanded.
A collective of 13 professional associations, which together say they represent two-thirds of medical care workers in France, said in response to the final report: "Legalising death administered in whatever medical form would turn the concept of care into its opposite."
"Negative signal"
Liberalising the law would also send a very negative signal towards the most vulnerable people in society and those around them, they said. As early as 1 April 2023, the French National Medical Association declared that it would reject the involvement of doctors in active assisted dying, "since the doctor must not intentionally bring about death by administering a lethal agent". The French bishops reiterated their rejection of any form of active euthanasia during their spring plenary meeting in Lourdes in early April 2023.
The citizens' assembly on assisted suicide had started on 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.
A reflection of the population
The citizens' assembly was organised by the Conseil économique, social et environnemental (Economic, Social and Environmental Council, CESE), the third chamber of the French parliament. Experts were providing the participants with the necessary information. The assembly with 185 participants was 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 was 20, the oldest 87 years old.
To recruit participants for the citizens' assembly, the market and opinion research institute Harris Interactive had 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 had appointed a Governance Committee, chaired by CESE member Claire Thoury, which included 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 was responsible for ensuring the methodological monitoring of the citizens' assembly and for monitoring the principles of transparency and neutrality. It met weekly until the end of March 2023.
In total, the assembly members had been discussing the issue of assisted dying with each other in nine three-day sessions. The CESE paid the assembly participants an expense allowance of 2,500 euros gross for their work. In addition, lost working hours had been compensated with 11 euros per hour. Transport, accommodation and catering costs had also been covered, and a childcare allowance was 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, had compiled a comprehensive information package for assembly members. One hundred pages of patient stories based on real cases were included to enable participants to familiarise themselves with the existing legal framework. The information was 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 was 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 received internet links to important sources such as legal texts, statements and reports
Discussions with experts and caregivers
Citizens' assembly members could also talk to experts such as former MP Alain Claeys, who co-authored the end-of-life law passed in 2016. They also heard from experts such as the National Ethics Advisory Board or international experts who explained the rules that exist in their countries.
In addition, assembly participants were 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 deliberated on what they have heard and their questions and opinions about it. In March 2023, the assembly formulated its recommendations. The assembly process was designed together with the citizens. Participants had 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 assured 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 did not have a legislative committee to mould the assembly proposals into law.
Debates in the regions
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".
In parallel to the deliberations within the citizens' assembly, debates were 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 exchanged 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", read 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.
President announces draft laws and third assembly
President Emmanuel Macron announced on 8 January 2024 that he would introduce two bills into parliament. The first will deal with the expansion of palliative care throughout the country. The second bill will deal with assisted dying. It was presented by the government on 10 April 2024.
On 26 April 2024, Macron came to meet the former members of the Citizens’ Assembly on the End of Life, who had gathered for the last time at the Palais d’Iena in Paris. He praised them for the work they had accomplished in the spring of 2023, but also for having demonstrated through their commitment "the usefulness of this democratic innovation" that is the citizens’ assembly. "This unprecedented exercise is set to be repeated," hammered the Head of State, now convinced of the "relevance of the approach. A third assembly will be launched before the end of the year, to be completed before the end of the five-year term".
"Tyranny of emotion and immediacy"
Macron, satisfied that the exercise has guaranteed "diversity in the debates" while enabling consensus to emerge. "The difficulty is that the world in which we live does not organise debates," insists the Head of State. There is a tyranny of emotion and immediacy, with the primacy of social networks. This makes it impossible to create a common frame of reference and therefore the possibility of consensus. That’s what the Citizens’ Assembly is all about."
In view of the progress made on the end-of-life issue, Macron recognises that the assembly members have a more politically decisive role. “You have steered the decision by giving guidelines and showing what you all agreed on”. This preparatory work “obliges” the government and Parliament towards the members of the assembly.
"This process creates responsibility"
"This process creates responsibility," concludes the President. "Parliament is not obliged to adopt all your recommendations, but everyone is accountable to you because you have helped to inform the decisions. It is this to-and-from between deliberative democracy and representative democracy that moves things forward".
In his view, the important thing is to have validated a new democratic tool to combat “disinterest in public affairs”. People don’t just want to vote and give mandates for everything: they want to be involved in the deliberations", he analyses. I’m convinced that participatory and deliberative democracy is a way of picking up the pieces."
Support 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 2,000 and 4,000 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 took place. A draft law will be debated and voted on in 2023.
Second national citizens' assembly in France
The Citizens' assembly on assisted dying in France was 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