French lawmakers are debating a bill that would allow terminally ill patients to interrupt treatment and be given "deep and continuous sedation" until death.
The draft law, which was submitted by Socialist Party Deputy Alain Claeys and conservative Deputy Jean Léonetti, has inflamed an already polarized public debate. Critics of the law say the bill is just one step short of legalizing euthanasia, while euthanasia advocates say the law does not go far enough.
One demonstrator named Sylvain, 40, joined the crowd of protesters who gathered Tuesday outside the Palais Bourbon — the seat of the French National Assembly, France's lower legislative chamber — where the proposal was being debated.
"I have a bone marrow disease," Sylvain told VICE News. "When I was 20, I got into an accident following a aneurysm, and things went downhill pretty quickly. They operated on me in 2010, and since then, I've been quadriplegic."
Sylvain, who has considered traveling abroad to end his life in a country where euthanasia is legal, says he would prefer to be given the choice to die at home, in France.
"We want to be able to decide what to do with our own bodies, without the blessing of the medical profession."
"I was going to end my days in Belgium or Switzerland, since it's impossible to do that in France today," he told VICE News. Sitting in his electric wheelchair and wearing a knitted blue poncho, Sylvain was surrounded by other campaigners from the Society for Dying with Dignity (Association pour le Droit de Mourir dans la Dignité — ADMD).
Sylvain explained that he had decided to cancel his plans to die abroad in order to fight for his right to die with dignity at home.
"I think it's very unfortunate that people have to go into exile to die," he said. "But since it looks like the law might change, I've decided to speak up and fight for the legalization of medically-assisted suicide."
Sylvain was one of close to 100 campaigners who gathered outside the National Assembly to voice their disapointment over a law that has been criticized by some as too timid. A handful of public figures also showed up shown up, including French journalist Bruno Masure and deputy Noël Mamère, who told reporters that the law had compromised on the wrong issues.
During his 2012 presidential campaign, president François Hollande pledged to legalize euthanasia, and a report commissioned just months after his election recommended that doctors be allowed to dispense painkillers to patients, even if such treatments were found to accelerate a patient's death.
The draft law that is currently under discussion does not legalize euthanasia or assisted suicide, but rather endorses "the right to deep and continuous sedation" for terminally ill patients. This allows patients to be put into a deep sleep and to interrupt treatment, like artificial nutrition and hydration — in essence, speeding up death.
Several high profile cases have further polarized French public opinion in recent years, including the case of Vincent Lambert, who had been in a coma since 2008. Lambert's doctors and his wife wanted to cut off the patient's intravenous food and water supply, a move that was opposed by the patient's family.
"Some people can no longer express their thoughts," said Sylvain. "Illness prevents them from being heard by public authorities. But I can still talk, and I want to fight for those who can't, and want to die peacefully, at home."
In 2005, Deputy Leonetti helped pass another law — the Leonetti law — which limits "therapeutic obstinacy," or life-prolonging treatments for terminally ill patients, in favor of palliative care, a medical approach that aims to relieve physical and psychological suffering.
For the ADMD's 60,000 members in France, the law submitted Tuesday has not gone far enough. "It's my body and it belongs to me," said Sylvette, who is nearing 80. "I should be able to do what I want with it. We're not forcing anyone to die, we just want them to have the choice to do so."
The proposed law has also upset a dozen conservative deputies, all members of a conservative parliamentary collective called Parliamentary Family Alliance (Entente Parlementaire Pour la Famille). The group has already lodged 800 amendments — in other words 800 discussion points — in a bid to delay the passing of the bill.
"I think it's very unfortunate that people have to go into exile to die."
Critics and advocates of the bill came head to head in Parliament on Tuesday over the bill's very first article, which states the right for all persons "to die peacefully and with dignity," an article branded "useless" by oponents of the proposal.
The 12 deputies, whose main fear is that the bill will pave the way for the legalization of euthanasia, were further riled when health minister Marisol Touraine suggested that the government "observe the law in its application, to determine whether or not further steps should be taken."
They have also opposed an amendment suggested by Socialist Party Deputy Jean-Louis Touraine, and backed by 120 Socialist officials, which calls on the government to "make the law complete [by adding] an actual right — the right to choose," and to rely on "medically assisted suicide."
One of the main differences between the new bill and the 2005 Leonetti law is that the new law makes a patient's end-of-life wishes legally binding for doctors.
"The choice to end one's life has to be a personal one," explained François, a pensioner who had joined the ADMD gathering Tuesday. "With the current law, people are held hostage by the whims of doctors. We want to be able to decide what to do with our own bodies, without the blessing of the medical profession."
A few hundred feet away from where ADMD campaigners had gathered, a collective of healthcare professionals and nurses called Relieve Not Kill (Soulager Mais Pas Tuer) were staging their own protest against the bill, which they described as "euthanasia in sheep's clothing." Alix Fresnais, the group's spokeswoman, told VICE News that, "the hand that heals cannot be the hand that kills."
The right to control what happens to one's body
According to the pensioner, François, many of the women protesting today are the same women who took to the streets 40 years ago to fight for their right to abortion. Gérard, another pensioner who supports ADMD's message, agreed. Some people in France, he said, are responding "to the call of a certain brand of religious fundamentalism and want to impose their beliefs — like they did at the Manif'pour Tous" — a 2013 rally against same-sex marriage.
Before health minister Simone Veil legalized abortion in 1975, women who wanted to terminate a pregnancy were often forced to cross the border and pay large sums of money to have abortions in countries where the procedure was legal.
"The right to abortion was a fight for freedom, but also for equality. Today, we're more or less in the same logic," explained Marie-Thérèse, a 78-year-old retired public school teacher. Sitting on a bench, a few feet away from the gathering, she told VICE News that, "the right to die can't be reserved for the wealthy."
On Monday, religious leaders from the Christian, Muslim and Jewish faith penned an opinion piece in French daily Le Monde voicing their opposition to the law, and maintaining that, "every human life should be respected, particularly when it is the most fragile."
"We live in a secular society, I don't see why some people's beliefs should stop me from dying as I wish," said Lydia, the former owner of an IT company who described herself as "1937 vintage."
Campaigners started to leave the small Edouar Herriot square around 3.30pm. Some lingered to keep the discussion going, others planned to meet up again at the next gathering. "I don't think much will change," admitted Sylvain, as he walked toward the National Assembly and prepared to watch the legal debate among lawmakers who hold his death in their hands.
The French National Assembly will vote on the law next week and then the Senate will begin debate.
Follow Pierre Longeray on Twitter @PLongeray