The Claeys-Leonetti law, Charcot’s patient – Liberation

Chronicle “To the little cure”

The latest court case, in which a veterinarian helped kill a friend of his with Charcot’s disease, points to the limits of French legislation, which does not always want to give the patient the last word.

It is a terrible disease. Charcot’s disease (or ALS, amyotrophic lateral sclerosis) is a degenerative neurological disease that affects all muscles, with no other prospect than death from asphyxiation if nothing is done. Often, we say, and studies show it, the French end of life law, known as Claeys-Leonetti, is speechless. It’s a stalemate, and sometimes even a great deal of nonsense in final care. Either it is arbitrary that he will prevail (depending on the doctor treating him) or the patient is lucky to have nets that help him shorten his end of life.

“What should have been done?”

In recent weeks, many cases have again signaled the current legislative limits. The latest is a vet who helped his friend with this disease get him medicines to end his life. Prosecuted in court “for forgery and use of false”, said veterinarian was released on May 4. But, late last week, Angers’ prosecution appealed against his release. At the hearing, the vet explained that he “first rejected” respond to a friend’s request before giving up “in the face of his anguish”. Present at the hearing, the patient’s ex-wife had not formed a civil party, claiming to have always said so“He would have ended his life before the disease imprisoned him in his body.” The man had therefore attempted suicide three times, in particular by drowning. A sign of his ferocious will, a sheet of paper appeared next to his will with these words: “Mostly let me go this time!” At the hearing the defendant’s lawyer stated: “What should have been done? Leave him exposed to suffering again? “

Terrible situation where everything ends badly. Valérie Mesnage, a neurologist and researcher at the National Center for Palliative and End of Life Care (CNSPFV), knows these questions perfectly. She coordinated a working group on end of life and ALS, the conclusions of which were made public in November. What do we notice? The current law, known as Claeys-Leonetti, is apparently clear: it offers the possibility of deep and continuous sedation until death (SPCJD). If a person is suffering from an incurable disease, enduring suffering that cannot be relieved, he can request this sedation. But then why, in Angers’ example, did the patient need to turn to his veterinarian friend to gain access to lethal drugs? “In the case of ALS the severity and incurability of the disease is evident, takes note of the CNSPFV report. The goal of treatment is indeed to alleviate the patient’s suffering, but it is not to intentionally accelerate the onset of death. However, when the patient presents refractory distress or requires a limitation or cessation of life support treatments, this request by the patient (and relatives) to access end-of-life support care that supplements the SPCJD may counteract the reluctance of the teams. assistance in responding at the right time. “

“Reading too restrictive”

The ambiguity is evident. For Valérie Mesnage, there are two types of dead ends today facing the end of life in Charcot’s disease. First question: when can sedation be implemented? At the last moment, but when? If the law is open, the High Authority for Health has considered it appropriate to publish very restrictive recommendations, believing that sedation could be undertaken only a few days before the alleged death. “Practically, observes Valérie Mesnage, there are many situations that could be resolved if some teams were not supported by an overly restrictive reading of the legislation. Because the law is much less limited than we think. However, there is another impasse. It is when the patient suffers from existential suffering. He or she no longer wants to live. The loss of autonomy is too great for him, the dependence too high. In Charcot’s disease, before losing the ability to breathe, the patient loses all use of his muscles, pinned down, immobile, speechless. “And there, the patients say enough. Everyone recognizes this, whether or not they are supporters of a more active goal. In front of them, in front of their request that refers to an existential suffering, the law does not give an answer. In a recent qualitative study, conducted on a limited number of patients, it is clear that their request is to have a say in the evolution of the disease, and to be able to express when it should stop.

It is obviously in these times that conflicts arise with health care teams. And that arbitrariness prevails. Either you are lucky to have a veterinarian friend who can help you, or even the chance to come across an open and tolerant palliative care team. Or the patient and her relatives will have to support teams who in no way want to hasten death and blame everything on the patient’s temporary depression. And it’s a dead end. “The case of Charcot’s disease is truly emblematic of the current limits of our law and its interpretation”, He told us Professor Didier Sicard, former President of the National Advisory Ethics Committee. We will see if the opinion that this commission will issue in June on the end of life will have the courage to face the reality of the current blockades, before Parliament decides whether or not to change the law.

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