By choosing to dissolve the National Assembly, Emmanuel Macron has reduced to nothing the ongoing discussions concerning the bill on the end of life. A “revolting” and “sickening” situation for Loïc Résibois who suffers from amyotrophic lateral sclerosis (ALS).
- Loïc Résibois learned that he was suffering from ALS in September 2022. Since then, he has been actively fighting for access to “assisted dying” in France.
- The end-of-life bill was finally discussed in public session since May 27 at the National Assembly, but its dissolution postponed it indefinitely.
- “With the dissolution of the National Assembly, it [le Président de la République, ndlr] condemns thousands of French patients to hours of anguish, of malaise, to useless agony. That is the truth, and he did not even have a word for us.”
His testimony had upset you. At the beginning of February 2024, I met Loïc Résibois for the first time. Suffering from amyotrophic lateral sclerosis, a disease better known to the general public as Charcot’s disease, he confided in us about his daily life since his diagnosis in September 2022. Although his disease continues to progress, his fight for the end of life remains unwavering.
Four months have passed since we met, how are you Loïc?
The disease continues to paralyze me a little more. If I could still take 3-4 steps four months ago, I am no longer able to do so at all today. And above all, as if that were not enough, the disease has attacked my speech. My breath is insufficient for me to speak normally. That is what is terrible about Charcot’s disease: you know that what you are going through is extremely difficult, but you also know that what awaits you is going to be even worse.
Are you currently required to use ventilatory assistance?
I have non-invasive ventilation, but every time I use it, it causes me a lot of discomfort: it makes my stomach swell and takes away the feeling of satiety, I also had problems with congestion in the lungs… so I don’t use it much, even though I should perhaps do it more often.
Regarding food, can you still eat everything?
For now, it’s still going well: I can eat all textures more or less normally, while obviously being careful to chew well.
We had been waiting for months for this bill to be presented and we felt like we could see the light at the end of the tunnel…
You, who are very involved in the end-of-life bill, how did you react to the President of the Republic’s announcement to dissolve the National Assembly?
About two minutes before, when the President said that measures had to be taken “up to” the French people, I said to my wife “he’s not going to dissolve the National Assembly, is he?” And in the end, that’s exactly what he announced. So I was disgusted. All the more disgusted because, if what Le Monde says is correct, this situation seems to make him laugh a lot. It seems that a business leader asked him the day after the dissolution “How are you, not too hard, these days?”, and he replied “Not at all! I have been preparing this for weeks, and I am delighted. I threw my grenade with the pin pulled at their legs. Now we will see how they get on…”. This cynicism disgusts me, and I think that it disgusts many French people, and above all, it disgusts the condemned sick people enormously. We had been waiting for this bill to be presented for months and we had the impression that we were seeing the light at the end of the tunnel…
It is true that, in addition, and despite the fact that the majority of French people are in favor of the legalization of euthanasiadiscussions around this bill had already been postponed several times…
Of course. And the day after his dissolution, when the President held his press conference, he obviously didn’t have a word for the condemned sick, just as he had never had one before. He met with the religious and the doctors to discuss the subject, but never with the condemned sick. The only ones he met were those who challenged him. So I see indifference at best, and contempt at worst.
I would have liked to see this law come to fruition in my lifetime, but I admit that I no longer really believe in it… At least I will have done my part.
Since then, you have been even more active on social networks, particularly thanks to your Instagram account. @resiboisloicit is important ?
Yes, I am even more active on social networks and in the media… My community is growing little by little, as my body weakens. Because even if it weakens, my determination remains intact: I want my end of life to have meaning, to serve a purpose. I would have liked to see the realization of this law in my lifetime, but I admit that I no longer really believe in it… At least I will have done my bit.
I only have one desire: to invite people to vote left!
You even go so far as to take part in the political debate!
I, who did not want to get involved in politics on social media, had to resolve to encourage people not to vote RN… Because voting RN is like throwing the bill in the trash! Members of the National Rally made scandalous comments about the end of life, going so far as to say that assisted dying was a “law for killing”. Hearing such comments disgusted me. I’ll be honest, even if the bill were to be re-introduced with the presidential majority, and I have a rather centre-right DNA, I don’t want to vote for them again. And then, it is certain that the left is much more open than the right on the end of life. So I only have one desire, to invite people to vote left!
I will certainly have to ask for deep sedation when possible, and that is a huge injustice, because potentially, I will have to drag my illness and my end of life like a burden.
Can you remind our readers why this assistance in dying is very important to you?
This is very important because the Claeys Leonetti law only allows patients to benefit from deep sedation when death is imminent. To be clear, you will be forced to go through your illness and suffering to the end before you can fall asleep. Furthermore, I denounce the hypocrisy of deep and continuous sedation, because this system is designed for the comfort of caregivers and not for that of patients who will take between a few hours, for the luckiest, to a few days, or even a week or two to die. I wouldn’t even want this system for my pet… So obviously, assisted dying is extremely important for us, both to be able to die at the right time, quickly and without pain, and above all, because it is likely to bring us serenity. And this is what Emmanuel Macron is depriving us of: with the dissolution of the National Assembly, he is condemning thousands of French patients to hours of anguish, discomfort, and unnecessary agony. That’s the truth, and he didn’t even have a word for us.
Are you considering going to another country to get this help in dying?
No. I am French, I believe I have the right to die in France. It doesn’t seem like an extraordinary request to die in one’s own country! So either the law passes in time, and I will benefit from it, or it doesn’t, and to be honest, I think that’s what will happen… So I will certainly have to ask for deep sedation when it is possible, and that is a huge injustice, because potentially, I will have to drag my illness and my end of life around like a burden.
