France to begin citizens’ debate on end-of-life care

A French citizen council of 150 members of the public will meet on Friday to begin discussions on hospice, including whether assisted suicide should be legalized. As French law has evolved over the past two decades, calls have increased to allow medically assisted death for terminally ill patients.

In August 2022, Pascal traveled with his partner Guy from their home in the west France to Belgium, where Guy ended his life by mellow death. Pascal said: “He kept it until the end of August to avoid disrupting our kids’ summer vacation. “Otherwise, I think he would have picked an earlier date.”

The couple had six adult children, all of whom supported Guy’s decision to medically assisted death. Just over 12 months earlier, he had been diagnosed with Charcot-Marie-Tooth disease, an incurable genetic condition that causes progressive loss of muscle tissue and sensation throughout the body.

Within six months of being diagnosed, Guy’s health had deteriorated dramatically. “He couldn’t move his arm or hand anymore, he started having trouble speaking. Everyone can see that continuing will be unbearable for him,” Pascal said. Choose to die in Belgium “was a relief for him,” he added. “We are sad but also relieved to see that, with him there are more happy things [in dying] rather than in pain.”

‘A French solution’

There is no exact figure on how many people from France go abroad to end their lives every year. But a 2015 study found that, over a five-year period, more than 65 people chose to die alone in Switzerland and this number is growing every year.

Neighboring countries including Belgium, the Netherlands, Luxembourg and Spain are all allowed to operate mellow death, in which a doctor injects a lethal dose of a drug requested by a patient to relieve pain. Assisted suicide, in which the doctor gives the drug but the patient administers it, is legal in Austria, Switzerland and Italy.

In France, no practice is legal. The closest French law to allow medically assisted death is the Claeys-Léonetti law, most recently updated in 2016, which allows doctors to intervene at the end of life for deep sedation of patients. terminally ill patients until their natural death. Terminally ill patients in France also have the right to refuse life-sustaining treatments and can state this choice before they request hospice services.

Assistant Professor Dr. Anna Elsner, from the school of humanities and social sciences at St. “Initially, it was presented as a sort of ‘French solution’ to assisted suicide,” says Gallen, who is also the recipient of an initial grant from the European Research Council. to study assisted death in European culture. “But those in palliative care argue that the current law allows people to die without suffering, and advocates of legalization don’t think it goes far enough.”

One hitch is the time frame when deep sedation can begin. Fabrice Gzil, deputy director of medical ethics, L’Espace éthique Île-de-France, and professor of ethics at EHESP, said: “It is only for those who are expected to die within next few days or hours. public health research (École des hautes études en santé publique), in Rennes. “Therefore, it is a question of whether this law is appropriate for people with serious, incurable diseases with symptoms that cannot or are very difficult to relieve but cannot die in a short time.”

This was the result that Guy had foreseen for himself. Although his muscles are rapidly degrading, his vital organs – such as his heart and lungs – are still relatively healthy. Without medical intervention, he could have lived for a long time in conditions of severe pain and limitation, without palliative care until the last days of his life.

“That scared us,” Pascal said. “We can’t wait for it to die of hunger or thirst.”

‘A new urgency’

Since an amendment in French law has allowed patients in France right to refuse treatment By 2002, the national legal framework had evolved to have more options in end-of-life decisions — “brick by brick,” says Gzil — without fully allowing euthanasia or assisted suicide.

Over the past few months, however, discussions have found a “new urgency,” said Elsner, spurred on by the death of legendary French-Swiss film director Jean-Luc Godard, who, on September 13, chose death by euthanasia in Switzerland at the Mosque. 92 years old.

On the same day, French President Emmanuel Macron announced the launch of a national debate by a panel of 150 citizens will discuss measures to expand end-of-life options, including the possibility of legalizing assisted suicide. The council will convene from December 2022 to March 2023 before sending their recommendations to parliament.

Within a week of Godard’s death, a landmark statement from France’s national ethics commission, the Comité Consultatif National d’Ethique (CCNE), opened a new avenue for legal change. . Contrary to the previous view that “the prohibition of killing” was a fundamental principle of French society, it found that “under the strict conditionsactive support in death is morally possible.

The extension of the right to choose at the end of life has always been supported by public opinion in France. In February 2022, 94% of respondents in France said they supported Legalize euthanasia for those experiencing extreme and incurable suffering and 84% are in favor of legalizing assisted suicide.

One reason for this is the seemingly lack of alternatives. Intensive care for terminally ill people in France is frequently underfunded and underdeveloped. Residents in 26 of the 101 administrative divisions of France Department yes no access to palliative care anything, and in three Department there is only one palliative care bed for every 100,000 inhabitants.

This is a worrying prospect for an aging population. “Without large-scale availability of palliative care, the fear of a ‘bad death’ will increase,” says Elsner. “It promotes the need to legalize assisted suicide – alongside arguments about the right to die with dignity and respect for individual autonomy.”

At the same time, Gzil says, “it is argued that access to medically assisted death would not be legalized without at the same time a very significant improvement in hospice care in France.”

‘Move forward’

For many people in France, the cost of going abroad to die, can be as much as up to €11,000, is prohibited. For others, making the long journey when they are seriously ill is too complicated.

If given the choice, Pascal said Guy would rather end his life in his home country of France. Pascal also found it difficult to spend the days immediately following Guy’s death in Belgium until he was able to collect his mate’s ashes.

“I was there alone, waiting. It’s not right to put people in that position,” he said. “The law in France needs to evolve. How come other countries, more Catholic and religious than France, allow assisted suicide, but we haven’t been able to move forward?”

Over the past two decades, many other prominent advocates have asked 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.

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However, there are still many objections to changing the law. Following the CCNE’s decision in September, the Catholic bishops met with Macron to express their “concern and belief that promote palliative care part of the ‘French heritage’.” Pope Francis also raise the issue with the president when he visited Rome in October, and Protestant, Jewish and Muslim leaders in France all expressed concerns of French law change.

In recent years, efforts to pass a right to die law in the French parliament have been thwarted by right-wing opposition MPs.

Gzil says the citizen debate gives France the opportunity to “deeply” study the issues surrounding not only dying support but all forms of end-of-life care.

“The country has had the opportunity to reflect deeply on this topic, and it has also been a very good opportunity to think about why palliative care is important and must be developed – and given that equality in debate alongside the question of whether assisted suicide should not be legalized.”

Pascal believes MPs can block legal change, even as he is confident of having the support of the public – and the president. During his 2022 presidential campaign, Macron passed through the town where Pascal and Guy lived and talked to them about Guy’s condition. After his death, Pascal wrote a letter to the president and received a reply in October. “He said he hasn’t forgotten Guy, and that he’s in favor of changing the law.”

Whether that happens or not, “I think the civic assembly is definitely a good thing,” Pascal said. “Perhaps it will allow us to move forward, [knowing] that all the different aspects were discussed.”


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