Yves here. This article points out that the perhaps undue eagerness of French pundits and pols to support assisted dying is coming at the expense of adequate funding and programs for palliative care.
In the US, for many, the situation is if anything worse. There seems to be a taboo, at least among some practitioners. My father had a terminal illness that years become very painful and debilitating. His father had spent the last nine years of his life blind in a nursing home. My father was unwilling to wind up bedridden and dependent. Perhaps if someone had given him an idea of what end of life care might look like, he might have been willing to get help. He instead shot himself.
By Anna Magdalena Elsner, an associate professor of medical humanities at the University of St. Gallen, Switzerland who is the principal investigator of Assisted Lab, a European Research Council (ERC) Grant investigating the aesthetics, laws, and ethics of assisted dying, and Jordan Owen McCullough who holds a Ph.D. in French Studies from Queen’s University Belfast, is a postdoctoral researcher in the ERC Assisted Lab at the University of St. Gallen, Switzerland, and associate editor of The Polyphony. Originally published at Undark
Between December 2022 and April 2023, 184 randomly selected French citizens assembled to reflect on a central problem of the nation’s health care system: Is the current model of end-of-life care working and, if not, what changes should be introduced?
On April 3, the group, known as the Citizens’ Assembly on the End of Life, presented the French president, Emmanuel Macron, with its final report. The vast majority of the Assembly, 97 percent, deemed the current model of end-of-life care in France insufficient, and more than three-quarters said they would support new measures to legalize euthanasia, assisted suicide, or both.
The French public and media have latched on to that last point, portraying the Assembly’s work as a referendum on assisted dying. In a recent issue of the French weekly news magazine L’Obs, prominent public intellectuals — including actors, filmmakers, university professors, and the mayor of Paris — penned an open letter calling on French president Emmanuel Macron and prime minister Elisabeth Borne to legalize assistance in dying. “Every year,” they wrote, “French men and women suffering from serious and incurable diseases are confronted with physical and moral suffering that treatments can no longer relieve.” The national discourse, however, misses an important point: The rising public support for assisted dying reflects our deeper failure, as a society, to adequately care for the living.
The provision of palliative care — care that seeks to maximize the quality of life for people living with serious or terminal illnesses, without hastening death — remains markedly underfunded and undersupported in France. The concept was first discussed in legislative settings in the mid-1980s, but it was not until 1999 that palliative care became a right for every French citizen. In 2005, the so-called Léonetti Law expanded these end-of-life rights to allow patients with severely life-limited prognoses the option to forego treatment — or to stop treatments that were already underway. In 2016, France introduced the Claeys-Léonetti Law, which remains the governing principle for contemporary palliative care in France. This law, presented as a specifically “French response” to a rising demand to legalize assistance in dying, permits physicians, at the request of the patient, to administer palliative sedation to people who are in the final stages of a terminal illness, or who have decided to cease treatment and face the prospect of “unbearable suffering.” With the law, France became one of the first countries in the world to make terminal sedation legal.
However, palliative sedation — currently the final recourse for French palliative care physicians — is distinct from assisted dying. It is administered to alleviate suffering, not to hasten death, whereas assisted dying is an active decision, on the part of the patient and their physicians, to bring life to an end. The French terminology, “aide active à mourir,” or “active assistance in dying,” captures this well. (By contrast, francophone Canada has opted for “aide médicale à mourir ,” or “medical assistance in dying” — although the anglophone acronym, MAID, undoubtedly played a role in that choice.)
Some argue that palliative sedation does not go far enough and that current eligibility requirements for the procedure are too strict. But a more fundamental question is whether existing palliative care services receive adequate support.
President Macron has promised significant funding increases for palliative care services in France over the next 10 years, and few would deny that they are desperately needed. Of the 101 departments, or geographic districts, that France comprises, roughly a quarter have no distinct palliative care units. That, coupled with inadequate human resources and lack of specialist training, means that, according to Claire Fourcade, president of the French Society for Palliative Care and Support, two thirds of patients in Francetoday have restricted access to palliative care. Yet the voices of palliative care professionals calling for increased funding have been notably absent from the public discourse around the Citizens’ Assembly.
Proponents of legalizing assisted dying argue that that issue is philosophically and politically distinct from the matter of improving palliative care. But the two ideas are connected: The reasons that many French people give for wanting a change in the law are intimately related to the distressing ways in which they are seeing people die today.
A series of articles in the recent issue of L’Obs, many of them written by relatives and friends of people who sought an assisted death outside of France, illustrate that point with heartbreaking clarity. One of the most moving stories is that of Roxane Guichard, the daughter of Anne Bert, a French author who travelled to Belgium in 2017 to end her life. (Bert published her story in a memoir titled “Le tout dernier été ,” or “The Very Last Summer.”) Guichard expresses the trauma of that final trip to Belgium. She describes the journey as a form of exile — not only for Bert but for herself and her father — that only added to everyone’s suffering. The image of the three of them journeying to Belgium by train, knowing that there would be an empty seat on the return trip, is powerful. They had been literally “uprooted” from their homeland — as Guichard puts it, using the original French term “déraciné” — and transported to a “parallel universe” in which Bert could exercise her autonomy to choose her own form of dignified death. Bert states in her memoir, it was not that she wanted to travel to Belgium, but that she dreamt of a “different medicine,” one that “takes care of the soul” when the body can no longer be cured.
As sociologist Nicolas Menet recently argued, “We mustn’t reduce the question of end of life to a debate around whether or not to legalize euthanasia.” Rather, he said, “we need to discuss the financing of palliative care and value that care provision. We also need to discuss what palliative sedation really means.”
In other words, improving end-of-life care in France, or anywhere for that matter, will require us to think holistically about the issues at hand, rather than look to assisted suicide and euthanasia as panaceas. (Writer and journalist Abnousse Shalmani also makes this point in a recent column for L’Express.)
Emmanuel Macron has promised a draft bill on end-of-life care by as early as the end of summer. What will the president do with the recommendations put forward by the Citizens’ Assembly? It seems likely that the government will legalize some form of active assistance in dying. However, one cannot help but wonder what challenges lie ahead. Will legalization attempts prove more problematic than the government imagines? Will it cause more issues than it will solve?
What the French Citizens’ Assembly report does not comment on is how much people’s own stories and experiences of dying factor into the normative arguments informing their point of view on assistance in dying. These stories are important points of reference that inform the law-making process. We must pay close attention to them.