End of life, the work program of the Citizens’ Convention

How to improve the end-of-life framework in France? To discuss this, 173 citizens drawn by lot, representative of the population, will meet for the first time this Friday, December 9, at 2 pm, at the Palais d’Iéna, headquarters of the Economic, Social and Environmental Council (Cese) responsible for organizing this unprecedented Citizens’ Convention.

They will be welcomed, for their official installation, by Thierry Beaudet, president of Cese, and Claire Thoury, president of the management committee (Co-gouv) who led the development of the work program and will ensure the smooth running of the debate. .

Emmanuel Macron, on the initiative of this convention that he announced on September 13, should not attend the inaugural session. It will be its Prime Minister, Elisabeth Borne, who will give the opening speech at 3:15 pm “We can hope that the government will not bring the power of the state to bring this Convention, which will deal with a subject that emits passions”, point to the one near the folder.

A first phase of “mission allocation”

Very concretely, the Convention will take place in three stages during nine sessions of three days each, staggered until March 19, 2023. Recommendations must be made by this date to the Prime Minister, Elisabeth Borne, the executive who maintains of control in the following na- until given.

“The first phase, of meeting and dedicating the mission, will cover two December sessions, from 9 to 11 and from 16 to 18”, said Claire Thoury. The opportunity for the designated citizens to discover themselves and familiarize themselves with the Palais d’Iéna, but to better understand the ins and outs of the question asked: “Is the end-of-life support framework adapted to the different situations encountered or should there be any changes? »

For this, they will have an empowering information kit developed by the National Center for Palliative and End-of-Life Care (CNSPFV), a public body under the authority of the Ministry of Health. “This hundred-page corpus will include twelve patient journeys, based on real stories, which will make it possible to familiarize with the existing legislative framework, to clarify the terms of the debate – advance directives, unreasonable obstinacy , denial of care… – and explain the organization and practices of care”explained Giovanna Marsico, director of the CNSPFV.

In addition, there are sheets on “Essentials” – key figures and infographics, historical timeline, overview of foreign laws, drug treatment – and in appendices, Internet links to bibliographic resources – founding texts (laws, opinions, reports ) works of testimony or fiction. “The whole must provide the most objective and neutral documentary base possible to serve as a red thread for the animation of the working groups”, emphasis on Giovanna Marsico.

Hearings of politicians, experts and guardians

“To complete their information, participants will also have the opportunity to hear personalities such as former MP Alain Claeys, co-author of the latest 2016 law on end of life, as well as national experts – from the National Advisory Committee for ethics, for example – or internationals coming to explain the systems that exist in their country”, added Claire Thoury.

In the second weekend of December, they will finally be able to talk to caregivers in the broadest sense – doctors, but also nurses or caregivers – and caregivers of terminally ill patients who arrive to explain their daily life. “This first stage should make it possible to establish the legal, institutional and philosophical framework in which the debate takes place”, he teaches.

January and February, the time for deliberation

Then comes the deliberation phase scheduled for January and February 2023, then the return in March. Hours to work with citizens, with full latitude to adapt the work program by asking to hear such a person or organization, or even organize a visit to a health institution or abroad.

Please note: the general public version of this kit will be available on the Citizens’ Convention website at the end of life, from Sunday 11 December. Finally, in addition to about thirty researchers and students and the press, any citizen will be able to attend the work of this “Convention of 150”, after registering at Cese and within the limits of available places.

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