For Hugo, a man approaching thirty, the debate over aid in dying was once a distant concern. “It wasn’t a subject I looked into, I didn’t follow the parliamentary debates, and I thought it would never come to pass,” he recalls. But last October, a diagnosis changed everything.
“My father suffers from amyotrophic lateral sclerosis, also known as Charcot disease.” This severe degenerative illness causes progressive paralysis. In Hugo’s 63-year-old father, it has advanced rapidly. “He has lost the ability to speak and to swallow,” Hugo explains. Fed through enteral nutrition, “he also struggles to move on his own.”
A Law That Arrives Too Late for Some, But Not Without Hope
From the moment of diagnosis, the question of end of life became unavoidable for his father, who now receives palliative care and has written advance directives. The law legalizing aid in dying and assisted suicide, promulgated on Wednesday, August 19 in the Official Journal, “should have come sooner,” Hugo believes. “We lost a lot of time. And in France, there are already many small hypocrisies, especially with deep sedation.”
The 2016 Claeys-Leonetti law already allows doctors to administer “deep and continuous sedation” to people with incurable illnesses until death. But those provisions are far from covering every situation, which is why the new law represents hope for many patients after years of debate.
Opening Dialogue Between Patients, Families, and Doctors
For Hugo, the law is a relief, giving every seriously ill patient the freedom to choose whether to use aid in dying. “If the text allows my father to have a choice about his end of life, whatever it may be, that’s really positive. It soothes me to know he will be able to decide,” says the young man, whose father communicates through a speech synthesis app. “Before a medical appointment, he prepares answers in advance to questions the doctor will inevitably ask. With the law adopted, I know he’ll prepare a whole series of questions.”
According to Hugo, a young jurist, the law’s greatest virtue will be opening dialogue between patients, their loved ones, and the medical profession. Until now, the topic of assisted suicide—legal in Belgium or Switzerland—was something of an elephant in the room. “It will be much easier to talk about this question openly, without feeling guilty or fearing what the doctor might say,” he says.
Limits and Lingering Frustrations
Hugo regrets that the French law remains relatively restrictive, notably excluding the possibility of binding advance directives for aid in dying. “As with organ donation, our choices belong to us,” he laments. Still, he notes that French restrictions won’t stop every patient. “Let’s not fool ourselves: if a case doesn’t fit within the French legal framework, there is always the possibility of going elsewhere…”
“Talking About It Won’t Hasten Death”
With the new law—though not immediately applicable, as several decrees are needed for it to take effect—Hugo’s position toward his father will evolve. Not long ago, he wondered whether he should take his father abroad if he wished to pursue assisted suicide. “The law can at least prevent me from feeling like a guilty accomplice. Today, I tell myself I can fully support him and see professionals who can explain what is possible,” he says.
In closing, Hugo stresses the importance of discussing end-of-life wishes with loved ones. “When you find yourself facing these questions, you realize it’s possible to talk about it, to express your wishes in advance, and that it won’t hasten death.”
