Deputies from the majority and the Nupes call on Wednesday to “considerably increase” the means allocated to palliative care to make “fully effective” the rights of patients as they approach their death.
More than a new law, don’t the French at the end of their life need above all that their rights be respected? The deputies in charge of the evaluation mission of the Claeys-Leonetti law conclude, in a report published on Wednesday March 29, that the framework set by the law of 2016 “responds to the vast majority of situations” dying patients. Unfortunately, many patients bear the brunt of a difficulty “main”according to this document: the lack of resources allocated to end-of-life support.
“As long as the development of palliative care does not constitute a real priority and the means devoted to it have not been considerably increased, the rights enshrined in the various laws on the end of life cannot be fully effective”warn the president of the mission, Olivier Falorni (Democratic group), and his rapporteurs, Caroline Fiat (La France insoumise) and Didier Martin (Renaissance), in this 115-page text.
Their observation echoes the first orientations of the citizens’ convention on the end of life, which must submit the conclusions of its work to Emmanuel Macron next Monday. The 184 citizens have already spoken out in favor of a “reinforcement” of the budget dedicated to palliative care and the release of “means necessary for effective implementation of the law”. The Ministry of Health has since promised a plan in this direction, without advancing on the amount of the envelope that will be allocated.
“Strong territorial disparities”
The Claeys-Leonetti law provides that patients have the right to have a “dignified end of life accompanied by the best possible relief of suffering”, recall the deputies. Access to palliative care, which aims precisely to relieve pain and soothe psychological suffering, appears to them as a “prerequisite” respect for this right.
Yet access to such support “is still far from being guaranteed for all French people everywhere on the national territory”, particularly outside hospitals, note the rapporteurs. Aggravated by a “serious lack of personnel”the offer “remains marked by strong territorial disparities”symbolized by the absence of palliative care units in 21 departments (where there are only palliative care beds scattered in curative services).
In addition to a major effort to develop palliative care, the deputies are calling for a culture shock among caregivers. “End of life situations are still often perceived in the medical world as therapeutic failures”, deplore the elected officials. They call out “dichotomy” between “curative services, whose supposed vocation is to cure, and palliative care services”in charge of “to take care”.
“This objective implies an in-depth review of the training of healthcare professionals, who are being prepared [jusqu’ici] to cure rather than to treat.”
Report of the Claeys-Leonetti law assessment missionconsulted by franceinfo
This effort “urgent” dissemination of palliative culture must be accompanied, in the eyes of the rapporteurs, by a project promised in January by Emmanuel Macron: the “challenging the current activity-based pricing model”. Current funding arrangements are “unsuitable for optimal palliative care”Who “is based less on technical acts than on human support”, underline the deputies. Activity-based pricing has “many perverse effects”encouraging for example to flirt with therapeutic relentlessness and to “delay the transition to palliative care, which is less profitable for establishments”they say.
“Unknown and imperfect” devices
In details, “the Claeys-Leonetti law has constituted undeniable progress”, continue the deputies, based on the hearings of 90 specialists in end-of-life issues (health professionals, senior civil servants, association leaders, etc.). By strengthening advance directives and the place of the trusted person, the text of the PS-LR law voted under François Hollande has enabled better “taking into account the patient’s wishes”they say.
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However, these devices remain “misunderstood and imperfect“. Elected officials particularly insist on the tool “little used” advance directives, which patients are reluctant to fill out to have their wishes respected in the event of their inability to express themselves before their death. “The subject of the end of life is a subject kept at a distance, when it is not a foil, even a taboo”from where “a tendency to want to delay the discussion”note the authors of the report.
“With rare exceptions, patients have effectively failed to appropriate the new rights provided by law.”
Report of the Claeys-Leonetti law assessment missionconsulted by franceinfo
To help the French take the plunge, the report recommends“encourage health professionals” to support their patients in drafting advance directives and appointing their trusted person. They suggest to “develop anticipatory discussions”free consultations that would allow everyone to be guided in their thinking before putting their wishes down on paper.
A hindered right to deep and continuous sedation
“Major innovation of the Claeys-Leonetti law”the right to deep and continuous sedation until death has also constituted “real progress” in the face of the suffering of the last days and hours, according to the parliamentarians. But, there again, they are surprised at the “low use of this device”which is due in particular to the “difficulty” to apply it outside the hospital environment. MEPs recommend “considerably strengthen the means” dedicated to mobile palliative care teams and home hospitalization, to “ensure permanent access” patients asking to end their sleeping days at home.
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There “rare” implementation of continuous deep sedation would also require“a form of reluctance among caregivers” against this practice “unpredictable”. Combined with stopping food and hydration, the procedure “sometimes extends over several days” and can place loved ones facing the show “particularly unbearable” deterioration in the patient’s physical condition. The elected officials therefore suggest, half-word, to allow the medical team to increase the doses in the event of a delay in agony. “unreasonable”, even if it means accelerating the onset of death.
Without (too) departing from the scope of their mission to assess the 2016 law, the rapporteurs conclude their text with an allusion to a possible legalization of active assistance in dying in France. “In most cases, people at the end of life no longer ask to die when they are adequately cared for and accompanied”they write. “However, it should be remembered that the current legislative framework does not provide answers to all end-of-life situations, in particular when the vital prognosis is not committed in the short term.” They judge “crucial” that the Parliament “will soon position itself on this question”.