At the end of August 2022, Pascal and Guy made their last trip together.
Leaving from the west of France, they joined Belgium where Guy was able to be euthanized.
"He held out until the end of August because he didn't want to disrupt the children's summer holidays," explains Pascal.
A year earlier, his companion had been diagnosed with Charcot-Marie-Tooth disease.
This inherited neurological disease, the most common in the world, causes weakening and atrophy of the muscles of the arms and lower limbs.
A few months after the diagnosis, Guy's state of health deteriorated considerably.
"He couldn't move his arms or hands and was starting to have difficulty speaking," says Pascal.
Choosing to die in Belgium was "a liberation for him", he adds.
"We were sad but at the same time relieved to see that he was happier [to die] than to live in pain."
There is no official data on the number of French citizens who decide to go abroad to end their life or benefit from euthanasia.
However, a study showed that in 2015, more than 65 French people chose to end their existence in Switzerland over a period of five years.
And that number keeps growing every year.
In Europe, legislation on the subject is varied and complex, ranging from total legalization to criminalization in all circumstances.
Currently, only the Netherlands, Belgium, Luxembourg, Spain and Portugal allow active euthanasia, i.e. when a doctor administers the fatal dose at the request of a dying patient.
In medically assisted suicide, the patient himself injects the lethal dose, usually pentobarbital, a powerful anesthetic.
In Switzerland and Belgium, for example, the product is prescribed by the medical profession.
On the other hand, the injection is carried out under the control of an association and the relatives of the patient.
In Spain, the last European country to have legalized assisted suicide, it can take place in a hospital or at home.
"It scared us"
In France, neither active euthanasia nor medically assisted suicide are authorized.
The French law known as "Claeys-Léonetti" of 2016 only authorizes a right to "deep and continuous sedation" until the patient's natural death, as well as binding advance directives for the medical profession.
Voted more than ten years after the first Leonetti law on the end of life, it also reinforces the refusal of therapeutic relentlessness.
"This law was presented as a French-style solution to euthanasia," analyzes Dr Anna Elsner of the University of St. Gallen in Switzerland, who studies the issue of assisted death in European culture.
"Some say it allows patients to die without suffering, but others think the legislation doesn't go far enough."
In France, the debate focuses in particular on the question of the start of sedation.
"It is only authorized for patients who will die in a few days or a few hours", recalls Fabrice Gzil, deputy director of the Île-de-France ethical reflection space and professor of the School of Advanced Health Studies. public.
“The question is whether the law is suitable for patients with serious incurable diseases whose suffering is almost impossible to relieve but who will not die in the short term.
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This is exactly what Guy feared.
Even though his muscles were atrophying rapidly, these vital organs, such as the heart and kidneys, were functioning relatively well.
Without assisted suicide, he could have continued to live for a long time but would have had to deal with pain and extremely restricted living conditions, without access to palliative care until his last days.
"It scared us," says Pascal.
"It was unbearable to wait for him to die of hunger or thirst."
The limits of access to palliative care
In France, the legal framework allowing better consideration of end-of-life choices has slowly evolved since 2002 and a law establishing consent to end-of-life patient care.
But the debate has never been completely closed and has found new vigor since an opinion published in September by the National Consultative Ethics Committee (CCNE) paving the way for the implementation of assisted suicide and euthanasia in France. .
Chance of the calendar, at the same time, the relatives of director Jean-Luc Godard, who died on September 13 in Switzerland at the age of 92, made it known that the filmmaker had resorted to medically assisted suicide, authorized in his country of residence.
For its part, public opinion overwhelmingly approves of a change in legislation.
According to a poll published in February 2022, 94% of those questioned say they are in favor of legalizing euthanasia and 84% of medically assisted suicide.
Within an aging population, the question of the end of life and the right to die with dignity remains a major source of concern.
Especially since access to palliative care services is far from easy for all French people: 26 departments, including Guyana and Mayotte, have no units and three of them have only one bed. per 100,000 inhabitants.
Moreover, these units suffer from a chronic lack of financial means.
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"Without widespread access to palliative care units, the fear of 'a bad death' increases," notes Anna Elsner.
"It also fuels calls for euthanasia legislation and gives arguments to advocates of the right to die with dignity and respect for people's autonomy."
“Another argument consists in saying that in the event of a significant improvement in palliative care reception in France, the legalization of medically assisted suicide would not be ethical”, nuances Fabrice Gzil.
The prudence of the head of state
In the meantime, many end-of-life patients choose to die abroad.
But the process is expensive, up to 11,000 euros.
A sum impossible to pay for many French people.
Moreover, undertaking a long journey remains a major obstacle for seriously ill people.
If Guy had had the choice, he would have preferred to end his life in France, assures Pascal who remembers the difficult days which followed the death of his companion while waiting to be able to recover his ashes.
"I was there all alone waiting. It's not fair to put people in this situation. The law in France must change. How is it possible that other countries more religious than ours allow the euthanasia when we are unable to move forward", asks Pascal.
Much to the chagrin of the Catholic Church, Italy recently allowed physician-assisted suicide.
But the conditions to be eligible are very restrictive.
Furthermore, euthanasia is still considered a crime.
In France, religious representatives also consistently and firmly oppose any change in end-of-life legislation.
In the wake of the opinion issued by the CCNE, the bishops expressed their "concern" during a meeting with Emmanuel Macron insisting on support for palliative care units.
Pope Francis also raised the issue during the French president's visit to Rome at the end of October.
Today, the citizen debate gives an opportunity to go "in depth" into all the questions raised not only by assisted suicide but by the end of life in general, wants to believe Fabrice Gzil.
"The country has the opportunity to be able to think deeply about this, to understand why palliative care units are so important and that they must be developed in the same way as to consider whether or not to legalize suicide medically. assisted", details the specialist in public health issues.
For his part, Pascal fears that the deputies will block a possible bill in the National Assembly even if he remains convinced of the support of public opinion and the Head of State.
During the last presidential campaign, Emmanuel Macron passed through the city where Pascal and Guy lived.
Pascal had discussed with him the situation of his companion.
After Guy's death, he wrote to the President to inform him.
In October, he received this response: "I will not forget Guy, neither his memory nor his fight. You can count on me."
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But for the moment, the head of state has chosen to move forward cautiously on a subject "anything but easy and simple".
When announcing the launch of this citizens' convention on September 12, Emmanuel Macron indicated that he had no "official position".
The citizens' convention on the end of life should deliver its conclusions in the spring.
In addition, a report from the Court of Auditors on the evaluation of palliative care in France is expected next year before a possible law by the end of 2023.
Article translated from English by Grégoire Sauvage. The original can be found here.
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