For Nathalie, this is a decision with serious consequences. Must the vital prognosis of a patient be necessarily committed to authorize him a possible access to euthanasia or assisted suicide? Since last December, this important question has been one of the questions that the 50-year-old has had to analyze and consider with the 184 other French people drawn by lot, as part of her participation in the Citizens’ Convention on the end of life. This work, resulting from a campaign promise by Emmanuel Macron, was put in place with the aim of helping him determine whether a new law on euthanasia and assisted suicide is desirable before the end of the five-year term.
After six work sessions spread over several weeks, various meetings with associations of patients and their families, medical specialists, political personalities, representatives of the main religions or even philosophers specializing in the question of death, Nathalie gave an opinion on the question: for this Lyonnaise, a possible law on end of life should not take into account this notion of “vital prognosis”, any more than “any reference to the short or medium term temporality”. “What is important to me is above all the notion of suffering”, she argues, believing that “anyone suffering from an incurable disease, lethal or not, who would not wish to suffer a degradation of their body and of his psyche for years, should be able to access active assistance in dying in his country”.
A clear opinion to which Antonin adheres, also drawn by lot last December. According to him, neurodegenerative diseases – these progressive conditions which affect the brain and the nervous system -, if they do not always involve death in the short term, but sometimes after several years, – this is the case of the disease de Charcot – or even do not involve vital prognosis – this is the case of Alzheimer’s disease – must fall within the scope of a future law. “We were told that the short term was a maximum of a fortnight before death. And the medium term, between three and four months… But in my opinion, some patients with Alzheimer’s, Charcot’s disease or other neurodegenerative pathologies should have the right to refuse to enter into a long process of suffering which can last for years. Is this suffering really worth living?
“A real debate”
For some of his colleagues, this notion of vital prognosis in the short or medium term seems, on the contrary, to be essential. “They fear that without this limit, any sick person could choose to leave without a fight, give up options that could have made them live for several years, or feel pushed towards the exit in order to no longer be a burden on the society, his family or himself”, summarizes the young man of 27 years. “There is a real debate, it is sometimes almost a philosophical discussion on the meaning of death that emerges”.
These divergent points of view are also observed in the first orientations voted by the members of the Citizens’ Convention on the end of life last Sunday. While 140 of the 167 citizens present felt that the end-of-life support framework currently in place in France “did not respond to the different situations encountered”, and that 125 considered that “access to active to die should be open”, the precise framework in which this possibility should be granted provokes more disagreement.
Of the 155 voters who voted on the question of the opening of euthanasia, 40 thus believe that the latter should only be granted to people “suffering from incurable diseases causing refractory suffering or pain AND whose vital prognosis is committed in the short or medium term”, while 62 consider that it should be offered to all patients with incurable diseases or refractory suffering or pain, “without the vital prognosis necessarily being involved”. No fewer than 53 citizens abstained on the issue.
“Fight Against Suffering”
“Above all, you have to define what ‘a vital prognosis committed in the short or medium term’ means: are we talking about days, weeks, months? Then you have to explain to me how a doctor can diagnose indisputably this delay, while I have experienced incredible surprises in my career or, conversely, patients whose condition deteriorated very quickly”, points out Dr Denis Labayle, who has been campaigning for more than twenty years for the right of French people to benefit from assisted dying and is radically opposed to this notion of “delay”, just like that of “vital prognosis engaged”. “I met again last week a patient in respiratory failure connected to a machine for 10 years, whose days were not in danger but who was over the head of a life in suffering. In my opinion, the debate is not to determine a pre-established deadline, but to take into account the notion of suffering. When should the fight against suffering take precedence over life at all costs?
Philippe Lohéac, general delegate of the Association for the right to die with dignity (AMDM), also says he is more than perplexed by this notion of “short or medium term”. While the Claeys-Leonetti law of 2016 precisely allows the patient to benefit from deep and continuous sedation maintained until death (SPCMD), provided that he is “suffering from a serious and incurable condition”, that he presents “a suffering refractory to treatment” or deemed “unbearable”, and that his “vital prognosis is engaged in the short term”, the man regrets a “exclusive” condition for certain patients.
In its recommendations, the High Authority for Health (HAS) has indeed clarified the definition of this “short term”, indicating that it was a death “expected within a few hours or a few days”. “It is largely insufficient: this notion of immediacy does not make it possible to help patients suffering from neurodegenerative diseases, nor to avoid the entry into the agonal phase of a patient suffering from a serious disease”, says – he argues, worried that a new reference to a “short or medium term” delay in the future law will lead some patients to endure several months “of a life they already consider unbearable” in terms of suffering physical or psychological.
“For us, active assistance in dying must be offered to anyone who has reached the advanced phase of a serious or incurable illness. And when you are suffering, the advanced phase is different for everyone,” he insists, referring to the example of Alain Cocq. Beneficiary of euthanasia in Switzerland in 2021, this French citizen had been suffering from an incurable and painful disease for more than 30 years. In an open letter written before his death and addressed to the President of the Republic, to the government and to French parliamentarians, he informed of his death “with dignity” in Switzerland, castigating “the lack of courage” of the French political class. For two years, the man had been bedridden and fed by a tube. “In some cases, including neurodegenerative diseases, the vital prognosis of patients is not necessarily engaged, or else in the very long term. They could survive for years, but with a reduced quality of life, psychological or physical suffering which are not acceptable, dependent for any gesture, on respiratory assistance and without any possibility of getting better”, adds Nathalie Andrews, co-president of the association Le Choix – Citizens for a chosen death. “What legitimacy would we then have to deny them the possibility of active assistance in dying?”.
“How do we separate things?”
For other committed experts, the possibility of benefiting from assisted dying must absolutely be accompanied by a clear and precise framework, particularly in terms of deadlines. “There is a difference between a person whose condition is already deteriorating and who has no chance of survival in the next few days, and someone who could survive or live for several more years on treatment but considers that she doesn’t want it anymore,” said Colette Peyrard, vice-president of the Jalmalv Federation (until death to accompany life). “Is it then up to society and the state to help them end their lives?” she asks.
Dr Gaël Durel, vice-president of the national association of coordinating doctors in nursing homes and medico-social (MCOOR) takes for his part the example of patients he meets every day in the field, sometimes suffering from a heart failure, cancers being treated or neurodegenerative disease such as Alzheimer’s. “Most can still live for several years with their pathologies. But often, they are also suffering from severe depression or crossed by existential anxieties”, he says. “Some mornings, they ask me what they are still doing there and confide in me that they want to leave, report their suffering and the incurable nature of their illnesses… Then a few weeks later, they will express their desires for life. do, then, the share of things?
For Sara Piazza, psychologist in a mobile palliative care team and president of the ethics committee of the Saint-Denis Hospital Center, the presence of the notion of “vital prognosis committed in the short or medium term” in a future law is therefore essential. “Some will feel extreme distress when they discover they have an illness from which they have not yet suffered the effects, others when they imagine that they are doomed… While this feeling can evolve , move, will they have to be ‘allowed’ to die or not?
And to address the subject of diseases considered non-lethal: “I am thinking, for example, of young people who would experience phenomenal existential malaise, who would be in great distress and great suffering, sometimes not curable. he, again, allow them to die? Who to say yes to, and who to say no to?” Among specialists and members of the Citizens’ Convention, this debate around psychological suffering – which sometimes does not involve the vital prognosis of patients – is raging.
Nathalie Andrews thus calls for “stopping the distinction between physical suffering and psychological suffering”, and says she is in favor of opening up medical assistance in dying for people with serious and incurable psychiatric conditions, as is currently the case in Belgium. On May 7, a young woman suffering from chronic depression for several years thus benefited from euthanasia in this country, where the law of May 28, 2022 legalized euthanasia for patients in a hopeless medical situation, and which report “constant physical and psychological suffering that cannot be appeased”. It should be noted that in 2022, only 0.9% of the 2,966 euthanasias carried out were performed there due to psychiatric conditions.
According the latest figures from the Federal Euthanasia Review and Evaluation Commission (CFCEE), the majority of pathologies at the origin of these euthanasias (60%) were tumours, combinations of several chronic refractory conditions (19.6%), diseases of the nervous system (8.9%) or even diseases of the respiratory system (3.7%). In the vast majority of cases (82.7%), the doctor believed that the patient’s death was foreseeable in the short term. So many elements of reflection for Emmanuel Macron and the Parliament, called upon to decide on a possible new law before the end of the five-year term.