France 5 broadcasts, Tuesday September 26 at 9 p.m., the documentary “End of life: so that you have the choice”, in which the doctor and presenter follows the journey of patients and doctors confronted with this highly debated question.
It is a very personal subject for her as for many French people. Marina Carrère d’Encausse presents a documentary entitled “End of life: so that you have the choice”, directed by Magali Cotard and broadcast Tuesday September 26 at 9 p.m., on France 5. The doctor and television host is confronted with this question : his companion, Antoine, suffers from Charcot’s disease, and asks for the right to choose his death. Marina Carrère d’Encausse has collected testimonies from patients and doctors, in France and elsewhere, confronted with this same delicate problem, which is not unanimously agreed upon within French society. While the end-of-life bill promised by Emmanuel Macron must be debated in Parliament next year, the columnist returns for franceinfo on the reasons why she took up this debate.
Franceinfo: Why did you want to address this subject?
Marina Carrère d’Encausse: I have been wondering for a long time about the limits of the Claeys-Léonetti law. I talked about it a lot with palliative care doctors. I could clearly see that there were things that did not fall within the scope of this law, given the examples given by certain foreign countries. I was wondering how we could make it evolve. When the President of the Republic committed to modifying this law, then to creating a citizens’ convention, I said to myself that it was really the moment to provide people with answers to the questions they were asking themselves. The objective was to be as educational as possible, so that people would have the means to think about what they wanted for their end of life or that of their loved ones, so that they would have the necessary information, because it is a subject that we know very little about.
What do you expect from the next end-of-life bill?
I’m waiting for him to move things forward. The reason why this law is difficult to make is that in France, there is always a tendency to oppose palliative care to euthanasia or assisted suicide. Some people think that if we change the law, we will stop caring for palliative care. This is absurd: 98% of end-of-life patients require palliative care and deep and continuous sedation.
We must therefore increase the resources given to palliative care. Promote this home care for those who wish it. We also need more information on what deep and continuous sedation and advance directives are. My goal, if the law evolves, is that a person who falls within the framework of this new law will not be obliged to go abroad in order to benefit from an end of life worthy of the name. I don’t find this acceptable.
Why is this subject so difficult to discuss in France?
There is a fear of excesses, probably. However, we should trust doctors who want to support their patients until the end. It’s true that palliative care doctors are fighting because they fear that this will harm palliative care, and I understand them. In France, we are in any case more towards the idea of developing palliative care as much as possible for the majority of patients. Other methods will certainly remain marginal. But, above all, I see that in France, we have a real problem with death. We have difficulty confronting it, putting words to it, saying things, showing it. I don’t see why we have this taboo with death.
You understand the caregivers who refuse to practiceeuthanasia?
Yes, of course, this seems a thousand times clear to me, and above all we must respect them. If the law passes, it will require a double consciousness clause. Thus, no doctor will be obliged to perform a procedure of euthanasia. But in this case he will have to send the patient to a colleague. If euthanasia is decriminalized, it will represent around 3% of end-of-life deaths in France.
Today, we hear a lot from doctors who are against euthanasia, and less from those who are in favor of it. There are already doctors who carry out clandestine euthanasia for their patients who are at an absolutely unbearable end of life. They do this in isolation and completely illegally. But there will undoubtedly be enough doctors for the several hundred patients who will be covered by this law.
Would you resort to euthanasia yourself if you were sick?
I wrote my advance directives. Only around 15% of French people over 50 have written them. That’s a ridiculous number. Whereas it is an extraordinary weapon, which allows us to say what we want and what we do not want at the end of life, and which doctors cannot oppose. These directives are part of the Claeys-Léonetti law. The French do not do it, because they are not informed. If this documentary could enlighten them on the means available to them through the existing law, that would already be enormous. It is an important tool for the doctor, so that he cannot express his own opinion, but listen to that of the patient. It’s essential.
As a doctor, would you be able to help a patient die?
Yes I think so. I have seen loved ones die in a truly undignified manner. I would be able to relieve patients. Because that’s what it’s all about: relief. I can’t stand people saying that euthanasia is killing. We always oppose deep and continuous sedation to euthanasia, but they are not the same practices, not the same products. However, I don’t see any difference between these two acts. In both cases, it is not killing. It’s about relieving, soothing and providing a solution.
The documentary “End of life: so that you have the choice”, directed by Magali Cotard and played by Marina Carrère d’Encausse, is broadcast Tuesday September 26 at 9 p.m., on France 5.