Kenzo Tribouillard, AFP | "Pro-life" protesters, who support the resumption of life support for quadriplegic Vincent Lambert, march outside the health ministry in Paris on May 20, 2019.

For years, Vincent Lambert has been the silent presence at the heart of an emotional right-to-die case that has divided his family and put a spotlight on France’s legislation governing end-of-life care.

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Lambert, a former nurse who has been in a vegetative state for more than a decade, is expected to die in the coming days after doctors decided to end life support treatment following a lengthy legal battle.

The 43-year-old was involved in a near-fatal car crash in 2008 that left him a tetraplegic with severe brain damage, a condition his doctors say is irreversible.

His fate has been the subject of a long-running legal battle between his deeply Catholic parents, who want to keep him alive, and his wife, who believes he should have the right to die with dignity.

The emotive case has taken the warring Lambert family to the top tribunals in France and Europe, with a final ruling by France’s top appeals court on June 28 saying Lambert should be allowed to die.

Lawyers for the parents have since pressed "murder" charges over the decision to cease giving vital treatments.

Known as the "Affaire Vincent Lambert", the bitter tussle has rekindled a charged debate over France's right-to-die laws, which allow for severely ill or injured patients to be put under sedation – under conditions critics deem too restrictive.

“It has taken more than 10 years to rule on the case of a man in a vegetative state who always said he wouldn’t want to end up this way,” says Philippe Lohéac, head of the French association for the right to die in dignity (ADMD), lamenting a legal framework “that leaves the door open to endless appeals by religious extremists”.

‘Passive euthanasia’

Euthanasia is illegal in France, but in 2016 a law was introduced giving terminally ill patients the right to be put into continuous deep sedation (CDS), which involves administering strong doses of sedatives to ease any suffering, until the patient’s death.

While some have described this as “passive euthanasia”, the law draws a distinction between euthanasia and CDS, making France the first country to legislate in such a way.

"Deep sedation is not a form of euthanasia, there is no lethal injection,” explains Valérie Depadt, a member of Paris hospitals’ advisory committee on bioethics, who teaches private law at Paris 13 University.

Depadt says French laws on end-of-life care are the result of a legislative process begun two decades ago with a shift away from “paternalistic” relationships between doctors and patients, in favour of a more collegial method, bringing together health practicioners, patients and their families.

In 2005, the so-called “loi Léonetti” introduced new rights for patients and clarified medical practices regarding end-of-life care. It banned “unreasonable obstinacy” in therapies and allowed doctors to end treatments that appeared "useless, disproportionate or having no other effect than solely the artificial preservation of life". The law also allowed doctors to administer to patients "in an advanced or final phase of a serious and incurable affliction" strong doses of painkillers as required, even if they hastened their death.

A decade later, the 2016 “loi Léonetti-Claeys" granted terminally ill patients who refuse life-sustaining treatment (LST) the right to continuous deep sedation.

Both texts also introduced the practice of “advance directives”, allowing patients to express their will regarding end of life, before they are incapacitated.

Years-long legal tussle

Depadt describes the 2016 legislation as “a balanced law that protects end-of-life patients and gives them new rights". The problem in Lambert’s case, she adds, is that “almost every aspect of this legal saga was subject to interpretation".

When doctors first decided to remove Lambert from life support back in 2013, having concluded that no therapy could improve his condition, his parents obtained a court ruling that reversed the decision. That sentence was overturned two years later, but this time doctors chose not to go ahead with the procedure citing a lack of “serenity and security” after staff members received anonymous threats.

After several more legal twists, Lambert’s parents went to the UN Committee on the Rights of Persons with Disabilities, which asked France to keep Lambert alive while it conducted its own investigation into the matter.But the French government rejected the request as non-binding.

On May 3, doctors again began the process of taking Lambert off life support, only to be stopped at the 11th hour when a Paris court of appeal ruled in favour of the UN committee’s plea. That ruling was in turn struck down by the Court of Cassation, France’s highest appeals tribunal, allowing doctors to stop feeding and hydrating the patient.

Lambert’s parents had previously filed a legal bid to keep him alive at the European Court of Human Rights and appealed to French President Emmanuel Macron to intervene. The Strasbourg-based tribunal declared there was no violation of Lambert’s right to life in the medics’ decision while the French president said the decision on Lambert’s fate did not rest with him.

“But it is my duty to hear the emotion that has been stirred and to respond,” Macron added in a statement on Facebook. “All the medical experts have concluded that his condition is irreversible.”

Lambert's missing will

Lambert’s wife and most of his siblings argue that he would not have wanted to live this way and should be taken off life support. The trouble is that he left no written instructions about his end-of-life wishes.

Doctors at the palliative care unit at Reims hospital in northeastern France, where Lambert has spent the past decade bedridden, said medical staff had never been able to communicate with him, even briefly.

“Had they been in possession of an advance directive from Vincent Lambert, we would probably never have had an ‘Affaire Vincent Lambert’,” says Depadt, noting that recent legislation has given more weight to patients’ end-of-life wishes.

Prior to the 2016 law, doctors were merely expect to consult advance directives, whereas they are now required to abide by them – with two exceptions. Doctors can ignore them in emergency cases, to allow for time to consider the case, or if they appear “manifestly inappropriate” given the patient’s conditions.

“This introduces an element of subjectivity that some have criticised,” says Depadt. “But it can be useful as people’s wishes may evolve with time. A measure of flexibility in the law is necessary; we are talking about life or death.”

Asked whether the ordeal of the Lambert family should inspire an overhaul of the existing legislation, Depadt argues that it would be wrong to seek to change it on the spot.

“Some say the law doesn’t go far enough, others decry it as euthanasia in disguise,” she says. “We’re in a democracy, and we cannot expect to reach a compromise that satisfies everyone on such a sensitive issue, one that touches on people’s profoundly personal beliefs.”

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