/ Europe
RIGHT TO DIE
‘The fear of a bad death’: France to begin citizens’ debate on end-of-life care
Issued on: 07/12/2022 – 21:56
A nurse wearing medical gloves holds the hand of a patient in the palliative care unit at Eugenie Hospital in Ajaccio, Corsica, on April 23, 2020.
A nurse wearing medical gloves holds the hand of a patient in the palliative care unit at Eugenie Hospital in Ajaccio, Corsica, on April 23, 2020. © Pascal Pochard-Casabianca, AFP
Text by:
Joanna YORK
6 min
France’s citizens’ council of 150 members of the public will meet on Friday to begin discussions on end-of-life care in France, including whether assisted suicide should be legalised. As French laws have evolved over the last two decades, calls have increased to allow medically assisted deaths for terminally ill patients.
In August 2022, Pascal travelled with his partner Guy from their home in western France to Belgium, where Guy ended his life by euthanasia. “He held on until the end of August to avoid disrupting our children’s summer holidays,” Pascal says. “Otherwise, I think he would have picked an earlier date.”
The couple had six adult children between them, all of whom supported Guy’s decision to have a medically assisted death. Just over 12 months earlier he had been diagnosed with Charcot-Marie-Tooth disease, an incurable hereditary condition that causes progressive loss of muscle tissue and sensation throughout the body.
Within six months of his diagnosis, Guy’s health had dramatically deteriorated. “He couldn’t move his arms or his hands anymore, he was starting to have difficulty speaking. Everyone could see that continuing would be unbearable for him,” Pascal says. Choosing to die in Belgium “was a release for him”, he adds. “We were sad but also relieved to see that, for him, there was more happiness [in dying] than being in pain.”
‘A French solution’
There are no exact figures on how many people travel to foreign countries from France to end their lives every year. But a 2015 study found that, within a five-year period, more than 65 people chose to die in Switzerland alone, and numbers were rising each year.
Neighbouring countries including Belgium, the Netherlands, Luxembourg, Germany, Spain, Austria, Finland and Norway all allow some form of euthanasia, where a doctor administers a fatal dose of a suitable drug to a patient at his or her express request in order to relieve suffering. Assisted suicide, in which the physician supplies the drug but the patient administers it, is legal in numerous European countries, including Switzerland and Italy.
In France, neither practice is legal. The closest French legislation has come to allowing medically assisted death is the Léonetti-Claeys law, most recently updated in 2016, which allows doctors to intervene at the end of life to deeply sedate terminally ill patients until their deaths naturally occur.
“Initially it was presented as a kind of ‘French solution’ to euthanasia,” says assistant professor Dr Anna Elsner, from the school of humanities and social sciences at the University of St. Gallen, and the recipient of a European Research Council starting grant to study assisted dying in European culture. “But those within palliative care claim that the current law allows people to die without suffering, and those in favour of legalisation don’t think it goes far enough.”
One sticking point is the timeframe for when deep sedation can begin. “It is only available for people who are expected to die within days or hours,” says Fabrice Gzil, deputy director of medical ethics body, L’Espace éthique Île-de-France, and professor of ethics at EHESP, the school for advanced studies in public health (École des hautes études en santé publique), in Rennes. “So there is a question over whether the law is suitable for people who have serious, incurable illnesses with symptoms that are impossible or very difficult to relieve but who are not expected to die in the short term.”
This was the outcome Guy foresaw for himself. Although his muscles were rapidly degenerating, his vital organs – such as his heart and lungs – were relatively healthy. Without medical intervention he could remain alive for a long time in painful and severely restricted conditions, with no access to palliative care until his final days.
“That scared us,” Pascal says. “We couldn’t bear to wait for him to die of starvation or thirst.”
‘A new urgency’
Since an amendment in French law gave patients in France the right to refuse treatment in 2002, the national legal framework has evolved towards greater choice in end-of-life decisions – “brick by brick”, says Gzil – without ever fully allowing euthanasia or assisted suicide.
Yet in the past few months, discussions have found a “new urgency”, Elsner says, spurred by the death of legendary Franco-Swiss film director Jean-Luc Godard who, on September 13, chose to die by assisted suicide in Switzerland at the age of 92.
That same day, French President Emmanuel Macron announced the launch of a national debate by a 150-citizen assembly that will discuss measures to broaden end-of-life options, including the possibility of legalising assisted suicide. The assembly will convene from December 2022 through March 2023 before sending their recommendations to parliament.
Within a week of Godard’s death, a landmark statement from France’s national ethics committee, the Comité Consultatif National d’Ethique (CCNE), opened a new path for legal change. In a departure from its previous stance that the “prohibition of killing” was a founding principle of French society, it found that “under strict conditions”, active assistance in dying was ethically possible.
Extending end-of-life choice is consistently supported by public opinion in France. In February 2022, 94% of people polled in France said they were in favour of legalising euthanasia for people experiencing extreme and incurable suffering and 84% were in favour of legalising assisted suicide.
One reason for this is a seeming lack of alternatives. Specialised care for people living with terminal illnesses in France is chronically underfunded and underdeveloped. Residents in 26 of France’s 101 administrative départments have no access to palliative care whatsoever, and in three départments, only one palliative care bed is available for every 100,000 inhabitants.
This is a worrying prospect for an ageing population. “If there is no large-scale availability of palliative care, the fear of a ‘bad death’ rises,” says Elsner. “It fuels demand for the legalisation of euthanasia – alongside arguments referring to the right to die with dignity and the respect of personal autonomy.”
At the same time, Gzil says, “there is an argument that it wouldn’t be ethical to legalise access to medically assisted death if there isn’t, simultaneously, a very significant improvement in end-of-life care in France”.
‘Moving forward’
Some politicians have claimed that doctors in France perform up to 4,000 secret acts of euthanasia each year, despite the practice being illegal. For many in France, the cost of travelling overseas to die, which can reach up to €11,000, is prohibitive. For others it is too complicated to make a long journey when they are seriously ill.
If the choice were available, Pascal says Guy would have preferred to end his life at home in France. Pascal also found it difficult spending the days directly after Guy’s death on his own in Belgium until he could collect his partner’s ashes.
“I was there all alone, waiting. It’s not right to put people in that position,” he says. “The law in France needs to evolve. How is it possible that other countries, that are more Catholic and more religious than France, allow euthanasia, but we haven’t managed to move forward?”
In the past two decades, numerous other high-profile advocates have raised the same question, including writer Anne Bert, who died by assisted suicide in Belgium in 2017, and activist Alain Cocq, who died by assisted suicide in Switzerland in January 2022.
>> Facebook blocks Frenchman’s bid to livestream his own death
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Yet there remains plenty of opposition to changing the law. Following the CCNE decision in September, Catholic bishops met with Macron to express their “concern and belief that promoting palliative care is part of ‘French heritage’.” Pope Francis also raised the issue with the president when he visited Rome in October and Protestant, Jewish and Muslim leaders in France have all expressed concerns over a change to French law.
Gzil says the citizens’ debate offers France a chance to delve “deeply” into the issues surrounding not only assisted dying but all forms of end-of-life care.
“The country has been given the opportunity to reflect deeply on this subject, and it’s also a very good opportunity to think about why palliative care is so important and must be developed – and to give that parity in the debate alongside the question of whether or not to legalise assisted suicide.”
Pascal believes MPs may block legal change, even if he is confident of support among the general public – and the president. During his 2022 presidential campaign, Macron passed through the town where Pascal and Guy lived and spoke with them about Guy’s condition. After he died, Pascal wrote to inform the president and received a reply in October. “He said he hadn’t forgotten Guy, and that he was in favour of changing the law.”
Whether or not that happens, “I think the assembly is definitely a good thing,” Pascal says. “Perhaps it will allow us to move forward, [knowing] that all of the different aspects have been discussed.”
