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What end of life in the event of Charcot’s disease?

It’s three letters, ALS, that stand for a terrible disease, amyotrophic lateral sclerosis, more commonly known as Charcot’s disease. This incurable neurodegenerative disease – the median lifespan is 36 months – causes progressive paralysis of the muscles, affecting breathing, speaking and swallowing, and particularly frightening end of life. This prompts some patients to want to anticipate death.

→ READ. “Faced with Charcot’s disease, it is not only euthanasia”

This was the case of the French writer Anne Bert, in 2017, who chose euthanasia in Belgium. Or the father of comedian Franck Dubosc, whose “chosen” death inspires the TV movie The last part, this Monday, November 8 on TF1.

Refusal of sedation

Would the law not therefore allow the end of life of these patients to be well supported? Not completely, admits, in a November 2 report, the National Center for Palliative and End-of-Life Care (CNSPFV). “The law responds to the majority of cases. But there are situations in which doctors find it more difficult to meet patient expectations ”, notes François Salachas, neurologist and co-chair of the working group behind the report.

This is the case, in particular, of access to deep and continuous sedation, “falling asleep” until death, introduced, under certain conditions, by the Claeys-Leonetti law of 2016. “People with ALS are likely to mobilize this right”, specifies Brahim Bouselmi, director, until last September, of the CNSPFV. But five years after the promulgation of the law, “Signals seem to indicate that its application is not easy, which does not correspond to the wishes of some patients”. FromTestimonies thus report refusal of sedation by medical teams despite requests made by patients.

The delicate notion of “short term”

“It’s a question of temporality, explains François Salachas. Deep and continuous sedation must intervene when the vital diagnosis is initiated in the short term. What to put behind this notion? ” If the law does not define the short term, the Haute Autorité de santé assesses it ” a few hours ” To ” A few days “.However, the patient can consider earlier that he is at the end of what he can bear ”, points out François Salachas.For the healthcare team, it’s something else: “Is she ready to accept a discontinuation of treatment involving death at short notice when the patient is not really at the end of life?” “

Should the law be changed and an “euthanasia exception” created for these particular cases? Some are asking for it. “This is not the conclusion reached by our working group, tempers François Salachas. It would be focusing on the tip of the iceberg of death demands, even though efforts can be made. ” For example, by offering better access to palliative care: in 2018, only 8% of patients with ALS who died in hospital had been treated in palliative care units (PCU).

→ INVESTIGATION. End of life: “How can we properly support the dying in these conditions? “

In a “Ideal scenario”, neurology and palliative care services should also work on a “Better coordination”, for “Anticipate the evolving episodes of a disease which distresses even caregivers”, continues Brahim Bouselmi. The notion of “short-term” vital prognosis must also be “Re-questioned”, he pleads. And palliative culture “Better disseminated” among health professionals. To better apply the existing, before any other development.


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