[LUM#6] Easing the end of life
In a world marked by ageing populations, providing relief at the end of life is becoming a crucial issue. Over the past twenty years, the law has taken up the issue, emphasizing the autonomy of the dying person. When a case of conscience arises, it is with each person, in his or her specificity, that we can find the way to a well-lived end.
" If, as Epicurus said, death is nothing since we are no more, we can only try to live a good life, until the end. If, as Epicurus said, death is nothing because we are no more, we can only try to live a good life, right to the end.
For several decades now, death has been sidelined. Intimately entwined with life for many centuries, it is now taboo and perceived as an intolerable rupture. At the same time, society has asked the law to take up the subject. At issue is the possibility of being kept alive longer than ever before. A relatively new final phase in life, resulting from recent medical developments.
"Right to sleep
In 2005, the Leonetti law established a framework for the use of sedation to relieve suffering at the end of life. Eleven years later, the Claeys-Leonetti law creates a right to " deep and continuous " sedation until death for terminally ill people, accompanied by analgesia and the cessation of all treatments. A sort of " right to sleep before dying to avoid suffering ", in the words of Jean Leonetti.
The cornerstone of this law is the search for the dying person's wishes. When the dying person is no longer able to express his or her wishes, and if he or she has not indicated advance directives or a trusted support person, the medical team consults the patient's family and friends. In any case, third parties can only act as spokespersons for the patient. The final decision always rests with the doctor, at the end of a collegial procedure precisely defined by law.
France therefore reaffirms the absolute prohibition against intentional killing. Yet the dividing line may seem fine. Deep and continuous sedation is accompanied by cessation of treatment, including artificial nutrition and hydration. And even if it is not intended to cause death, it can contribute to shortening life. Death may occur in the days or even hours that follow. "But intentionality and temporality distinguish it from medically administered death. The law thus protects the living. The text avoids a gesture that is very heavy on the conscience of those who carry it out ," explains François Vialla, professor of law and director of the Centre Droit et Santé at the University of Montpellier. Other countries have made different choices. In Belgium, the Netherlands, Luxembourg and Colombia, the administration of a lethal substance is authorized.
Human support
But is euthanasia really at the heart of the debate? When a person at the end of life asks for assisted suicide or euthanasia, he or she is first and foremost expressing the need to be taken care of. " It's an expression that something is wrong with the dying person," explains Camille Abettan, a philosopher at the Espace Régional de Réflexion Ethique (ERE) in Languedoc-Roussillon. When caregivers take the time to provide support, with modern techniques for alleviating suffering, the request for euthanasia almost always disappears ".
Being surrounded, relieved of physical pain, breathing difficulties... the palliative care palette is vast, and caregivers adapt to the needs of each dying person. Their actions are always guided by fundamental ethical principles: beneficence and its corollary, non-maleficence. One of the central needs of dying people, again and again, is support. " Generally speaking, everyone agrees that a good end of life is one where the medical and care teams have time for human accompaniment ," sums up the philosopher.
The least bad solution
As for end-of-life cases that have been brought before the courts and given media coverage, they are ultimately rare. " In the vast majority of situations, the bond of trust between caregivers, the person at the end of life and the loved ones is strong enough to avoid litigation," explains François Vialla. The rare trials - two since the 2016 law and, of course, the highly publicized case of Mr Vincent L. - stem from a misunderstanding of the texts and a failure by caregivers to respect procedures, not from a lack of benevolence or humanity."
Ensuring that medical teams can make the law their own is a priority... ". With this in mind, the Centre Droit et Santé at the University of Montpellier has been providing training since the 2005 law came into force," says François Vialla. " Training courses do exist, but time needs to be freed up in the overloaded daily lives of carers so that they can benefit from them ," urges Camille Abettan.
And when disagreements about the "right decision" arise within the medical team? For ethical support, they can consult the hospital's local ethics committee. This multi-disciplinary team of doctors, nurses, lawyers, philosophers and ethics specialists offers its own lines of thought, generally helping to unblock situations. " It's a matter of reflecting, for a specific situation, on what would be the least bad solution. It's very rare for a solution to be self-evident. It's never ideal," sums up the philosopher.
UM podcasts are now available on your favorite platforms (Spotify, Deezer, Apple podcasts, Amazon Music...).