End of life: “In a broken society, it's incredible that the only thing we could agree on would be to organize death”

Claire Fourcade from Narbonne is president of the French Society for Palliative Care. Midi Libre – SYLVIE CAMBON

Claire Fourcade is president of the French Society for Palliative Care and Support, and a doctor at the Grand Narbonne private hospital. This Wednesday, January 22, she is publishing “Journal de la fin de vie” (ed. Fayard), while the process of overhauling the Leonetti law, interrupted by the dissolution last June, will be relaunched on terms that have yet to be defined, François Bayrou and Yaël Braun-Pivet indicated on Tuesday, January 21.

President of the French Society for Palliative Care and Support, a doctor at the Grand Narbonne private hospital, Claire Fourcade is publishing “End of Life Journal” at Fayard this Wednesday, January 22. Inspired by the journal she has kept since she took over as president of the Sfap in September 2020, the book is informed by her discussions with patients, caregivers, unusual anecdotes, an exchange with the writer Alexis Jenni, winner of the Prix Goncourt, a face-to-face with Michel Houellebecq, a meal at Brigitte Macron's table… and discussions with politicians from all sides, prior to the bill establishing “active aid in dying”, under discussion during the dissolution of June 9, 2024. “End of Life Journal” is a “trace”, says Claire Fourcade. A landmark in times of new deadlines.

Your book, “Journal de la fin de vie”, is being published at a time when parliamentary debates on the end of life are due to resume soon, as was planned ?

I wrote this book as a diary, without any particular plan. I started writing when I was elected president of the Sfap, the French society for palliative care and support, in September 2020. I was sure that when Covid ended, we would be protected from this debate on euthanasia or assisted suicide.

And then the debate quickly returned. But I never wrote to weigh in on the debate.

Writing allows me to take a step back and reflect. The dissolution closed a chapter, I sent the manuscript to the publishers.

Successive Prime Ministers, today François Bayrou, yesterday Michel Barnier, have affirmed their desire to relaunch the legislative process. Are you worried that times will be even more favourable to the text of the MoDem Olivier Falorni, former general rapporteur of the special commission on the end of life, who is carrying a project of active assistance in dying ?

We, palliative care workers, have been living for years with our heads drawn in, wondering when it will fall. I am trying to distance ourselves a little from that. We have no control over the political calendar.

If Olivier Falorni's proposal comes back, it is tough.

You come back to your many exchanges with politicians, your interventions at the National Assembly, Brigitte Macron, Michel Houellebecq, but also with the Goncourt Prize winner Alexis Jenni who changed his mind after listening to you… you can’t do “more” today ?

We will continue to say that we do not want to be involved in active assistance in dying.

We try not to get discouraged, it’s difficult to be heard. But I think it is necessary to do so.

I am also convinced that the more we dig into the issue, the more we can show the complexity of the subject.

Among the 220 deputies who signed Olivier Falorni's bill, a large number do not sufficiently appreciate the issues at stake. When I see that in Canada, the promoters of the law are now saying that they did not want this, I want us in France to have the means to know.

“It is not with patients suffering from Charcot's disease that we have the most difficulty”

There is a great misunderstanding in this debate ?

The writer Alexis Jenni summed it up very well when he wrote that he thought that “nothing serious opposed euthanasia”. At first glance, for the vast majority of the population, it is obvious.

It is by going further that we see how complicated it is, that when we are healthy, we do not think as we do when we are sick…

You repeat what you have often said: out of the 13,000 patients that your unit, at the Grand Narbonne private hospital, has supported in twenty years, you have only had 4 persistent requests for euthanasia. And you repeat that to “watch death come without blinking, you have to be very strong”… This is not the situation of the majority…

Except that it becomes so if society carries this message.

On the subject of misunderstandings, again: we often talk about people suffering from Charcot's disease, to show the inadequacies of the current framework. You point out that the texts already allow them to “refuse treatment”, and caregivers must “provide relief whatever the cost”.

As part of the debate, we worked a lot with the head of the ALS center at Pitié-Salpetrière in Paris, the largest French center for Charcot's disease. They have more experience than we do. And like us, they say that it is not with these patients that they are in the most difficulty.

2025 is the twentieth anniversary of the Leonetti law. This is a bit late, but there is a lot of educational work to be done to explain what is possible.

“If the Leonetti law were presented today, it would be voted unanimously”

You imagined “the violence, the low blows, the unbridled quest for power, the sometimes excessive ambition”… and you finally discover “committed men and women”, who listen, you even find that you have a lot in common with the person responsible for health issues at LFI, who is nevertheless in favor of euthanasia and assisted suicide… we are in a big misunderstanding with the politicians ?

Of the seven health ministers I met, I think there were two who were really in favor of the bill. Aurélien Rousseau, I didn't know. They all say “We have to.” And yet, when we ask the French, the question of the end of life comes in 16th position of their concerns in the latest Harris Interactive survey, and barely 10% think that it is a priority. There is not really societal pressure. I would say that there is almost cultural pressure, we see it with “The Room Next Door”, Almodovar's latest film, “Amour” by Michael Haneke…

I think that for thirty years, euthanasia has been shown as something desirable. It is very difficult to oppose it. The one who did it best was Robert Badinter, when he was interviewed by the Leonetti mission in 2008 (Editor's note: the senator, skeptical about the “euthanasia exception”, declared at the time that “the right to life is the first of human rights” and affirmed that “no one can dispose of the life of another”).

He says what a politician could wear today without being afraid of appearing old-fashioned, conservative… I don't understand, moreover, the position of the left in this debate. It would be logical for it to seize a less financialized, different health system. I am surprised that she wants a system that will kill the “old” and the “sick” rather than thinking of a system that can accompany them. Only the communists carry a singular message.

Supporting the sick is not old-fashioned. If the Leonetti law were presented today, it would be voted unanimously. The problem is that it has not been implemented, it has not been explained, and since it has not been applied, all the deputies have unacceptable end-of-life stories around them. What they report is indeed scandalous. But what I hear in these stories is that today, we can do things differently.

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Two different texts or one ? Bayrou and Braun-Pivet do not agree

Examined in first reading in the Assembly from April 27, 2024, the text of the law that was to frame the new rules for the end of life, after months of tense debates, was to be the subject of a vote on June 18, 2024. When Emmanuel Macron dissolved the National Assembly on June 9, 2024, he sweep everything.

The text was to allow for “active assistance in dying”, which has aroused strong opposition from the majority of caregivers, under conditions that remain to be defined, beyond the framework set by the Leonetti law of 2005 and the Claeys-Leonetti law of 2016. Michel Barnier, who had set a new timetable for examining a text, the debates were to resume in the National Assembly on February 3. François Bayrou indicated on January 14 in his general policy speech that Parliament should address the situation. On Tuesday, January 21, Franceinfo reported that the Prime Minister wanted to present two texts, one on the end of life, the other on palliative care. 

"We don't need a law to develop palliative care across the country", replied Yaël Braun-Pivet when interviewed on the show "C à vous". But she believes that it is "absolutely necessary to legislate" on “active assistance in dying”.  

Everyone has “their” definition of what it means to die with dignity ? For one of your patients, whom you quote, it's “not suffering”.

I understood what he meant, even if he never said the word euthanasia. The conversation continued on what we could do, how we could support him. And as in the vast majority of situations, we had no difficulty. We accompanied him and I think he felt he was dying with dignity.

For me, it is also important to show that in Narbonne, even in a small town, even in a poor department, we can support people properly. I have heard so much that we cannot do it.

“At the end of the 70s, we made lytic cocktails, we did not know how to do otherwise”

Palliative care, which you define as a way of “caring differently”, could be, you say, a model for a health system that is at the end of its tether…

Yes, it works, and it is cheaper. When we do medicine that makes sense, it works for patients, and it works for caregivers. In our country, they do not leave. There are six of us doctors, we have a very stable team and we have no trouble recruiting young people, whereas in Narbonne, we shouldn't be able to do that!

Palliative care was born from that, from questioning medicine. Right now, we're heading for a brick wall, we can clearly see that it's not working!

You're coming back, by the way, to the end of the 70s-beginning of the 80s when, in France, doctors “euthanized” patients without a second thought, we've forgotten that ?

Yes, it was euthanasia, a completely ordinary way to die, we've completely forgotten that. I remember what I heard during one of my first internships in the intensive care unit of the Montpellier University Hospital. A doctor came to the staff and said “During the night I cleaned airlock 5”. In “cancer”, it was the same.

We made lytic cocktails. It was a medical decision, we didn't know how to do otherwise. It is this period that explains the French position on the end of life. It is this history that built us. A group of caregivers and philosophers came to question this system, went to England…

Then, it was the AIDS patients who in turn came to question the system.

At that time, we deconstructed the omnipotence of doctors. We can clearly see, in consultation, how easy it is to take power, especially when faced with fragile patients. For me, euthanasia is the return of the omnipotence of doctors. In the Falorni bill, all the power is with the doctors. This reform is a real “scam”: patients are told that they are going to become actors, but it is the doctor who says yes or no, who does…

You recall that you were an emergency doctor, we are far from palliative care…

When I came back from Canada, I worked in the emergency room for eight years while waiting for a position in palliative care. Many palliative care doctors are former emergency room doctors. You learn to immediately identify what is serious or not, and you learn to put things into perspective. But for many emergency room doctors, what is lacking is time.

“The first question we should ask ourselves is therapeutic obstinacy”

You are a believer, does it influence you ?

I would say not at all. But it is very difficult to decode yourself. On the other hand, I am convinced that ideology does not resist reality. If every day we had patients who asked to die and we refused, it would be untenable. We couldn't.

For me, the question of respect for human beings, their uniqueness, is a question of caregivers, it is not a religious question.

“Can we reasonably propose to the French to organize the conditions of their death before arranging their living conditions”, you write. In the context that we all have in mind, the times are unique ?

The priority is to have a budget… We live in a shattered society, and a world that is so stressful. I find it incredible that no one is shocked that we say to ourselves that the only thing we could agree on today is to organize death. There are so many emergencies!

How do you explain it ?

I think that when we are far from these issues, we can see things as a bit romantic, we have the impression of doing good with a bill like that… we do not see reality. We do not see the impact of a collective message that we would send to fragile people, which would go from “We care about you” to “If you want to die, we are ready to help you”.

You continue to ask to apply the Leonetti law, with more resources ?

Let's apply the law. And it is not just a question of resources. The first question that we should ask ourselves, in a context of limited resources, is that of therapeutic obstinacy. We are giving treatments that cost 5,000 euros per vial, while studies show that they prolong life by 17 days. Is this reasonable? ? The question is not more resources, but how we distribute them.

“We had made proposals on the issue of volunteering by caregivers”

We are moving towards a new law on the end of life, that's for sure ?

We have been announcing it for over four years. It is obviously likely. But the more time we have to explain, the more things may change.

The law may also be a little different. We had made proposals, for example on the issue of volunteering of caregivers, while the current text involves all caregivers, except those who use their conscience clause.

We propose that these be volunteer caregivers, trained and supported, to whom we can refer. And we will thus be able to continue to provide care.

You have reconnected with the new ministerial team ?

We know each other quite well with Yannick Neuder, he is the Prime Minister that I speak to informally. Contact is easier. But I think that Catherine Vautrin will take charge of the file. And we don't know what position the government will take. François Bayrou said that the file would come back through Parliament, but if there is a bill, the government will support it, oppose it, we have no idea of ​​the government's opinion.

But you have an idea of ​​François Bayrou's opinion…

I think that personally, he is not in favor of active assistance in dying. But what does it change ? I don't know after seeing all these ministers who were “against” personally, that didn't stop them from supporting the idea of ​​active assistance in dying.

It's a political game.

Journal de la fin de vie, ed. Fayard, 22.90 euros I subscribe to read the rest