2023-05-22 17:51:44
How can we better structure the supply of palliative care to adapt it to the growing needs of an aging population and allow all patients who are entitled to it to be assured of quality care?
This is the subject of the ministerial instruction to be published this week to replace a fifteen-year-old circular. It will be the first stone of the major palliative care development project launched by President Macron on April 3 in parallel with a bill authorizing active assistance in dying, which must be presented before the end of the summer. .
The creation of regional palliative care networks
In the – not definitive – version of this instruction that The cross was able to consult, the main novelty lies in the creation of palliative care channels which remain to be developed under the authority of the regional health agencies (ARS) by the end of 2024.
“It is a question of organizing a network of the territory which makes it possible to take care of all the patients who need it (from infants to the very elderly), regardless of the place of life and care (at home, in Ehpad , in the hospital or in a specialized care home), and to ensure the continuity of care according to the evolution of the situation and the choices expressed by the patient”, summarizes Elisabeth Balladur, hospital doctor and one of the linchpins of the new text.
“In other words, it is no longer the patient who adapts to the offer, but the offer that adapts to the patient”, insists Giovanna Marsico, director of the National Center for Palliative and End-of-Life Care (CNSPFV).
Consideration of patient wishes
Because the other novelty is to organize the offer to allow, as much as possible, home care for all patients who wish, provided that they have an entourage likely to accompany them. .
Concretely and as a general rule, if the condition of the person being cared for is judged to be not very complex and stable, they will be monitored by their attending physician and supported by the nursing and home help services. If the situation requires enhanced care, the attending physician can then call on a mobile palliative care team (EMSP) which will provide expert advice or even a day hospital service (HDJ) for occasional technical care. Finally, if the condition becomes even more complicated, hospitalization at home may be put in place.
“The 2008 circular organized a hospital-centered and highly medicalised vision of the end of life. The instruction takes into account the fact that the trajectories are diverse and can not only be conditioned by the state of health, but also by the psycho-social situation and the wishes of the patients which must be taken into account in the evaluation” , souligne Giovanna Marsico.
A ten-year strategy still to be developed
It remains that this instruction, which seems ideal on paper, will require many financial and human resources to be implemented on the ground. “It will be the object of the ten-year strategy for the development of palliative care to match the credits to develop the projects which will be validated by the ARS”, underlines the office of Agnès Firmin Le Bodo, the minister delegated to the health professions in charge of the file.
A first draft of this ten-year strategy which will take over from the 2021-2024 development plan should be presented in mid-July by Professor Franck Chauvin, responsible for coordinating the work. The needs are enormous, as pointed out by all the bodies that have looked into the subject, from the National Consultative Ethics Committee to the Citizens’ Convention on the End of Life, via the parliamentary mission to assess the Claeys-Leonetti law.
In a fascicle which takes up the data of the debate, the French Society for Support and Palliative Care (Sfap) recalls that, of the 300,000 people who died in 2022 and who should have benefited from palliative care, two thirds were unable to access it for lack of of sufficient supply.
In these conditions, “How can we be sure, as the Minister guarantees, that patients who tomorrow will ask for active assistance in dying have indeed been offered palliative care? », worries the Sfap in a press release published on May 21. “Given the efforts made, we should be able to cope”, replies, confident, the ministry.
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The contours of the bill on active assistance in dying
In The Sunday newspaper you 21 MayMinister Agnès Firmin Le Bodo clarified the contours of the bill that she will present “before September 21” :
The text will set three “red lines” : access to assisted dying will be limited to adult patients whose vital prognosis is committed in the medium term and whose discernment is intact.
Doctors will be able to invoke a clause of conscience and any patient who requests active assistance in dying must first be offered palliative care.
The project should ensure a “traceability from A to Z” by a priori and a posteriori control of the procedures giving right to active assistance in dying.
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