[LUM#6] Providing Comfort at the End of Life
In a world marked by aging populations, providing relief at the end of life has become a crucial issue. Over the past two decades, the legal system has addressed this issue, emphasizing the autonomy of the dying person. When a moral dilemma arises, it is by considering each person’s unique circumstances that we can find the path to a meaningful end of life.
“The evil that strikes the greatest fear in our hearts is nothing to us, since as long as we exist, death does not exist, and death is where we are no longer.” If, as Epicurus said, death is nothing since we are no longer there, we can only strive to live a good life, right to the very end.
For several decades now, death has been pushed to the sidelines. Once intimately intertwined with life for centuries, it is now considered taboo and perceived as an intolerable rupture. At the same time, society has turned to the law to address this issue. At the heart of the matter is the possibility of being kept alive longer than ever before—a relatively new final stage of life that stems from recent medical advances.
"Right to Sleep"
In order to provide relief to people at the end of life, the Leonetti Law was enacted in 2005 to regulate the use of sedation to alleviate suffering. Eleven years later, the Claeys-Leonetti Law established a right to“deep and continuous”sedation until death for terminally ill patients, accompanied by pain relief and the discontinuation of all treatments. A sort of“right to sleep before dying so as not to suffer,” in the words of Jean Leonetti.
The cornerstone of this law is determining the wishes of the dying person. When the person is no longer able to express their wishes, and if they have not provided advance directives or designated a trusted representative, the medical team consults with the patient’s family and friends. In any case, third parties can only act as the patient’s spokespersons. The final decision always rests with the physician, following a collegial decision-making process strictly governed by the law.
France therefore reaffirms this absolute prohibition: one must not intentionally cause death. The line, however, may seem blurred. This is because deep and continuous sedation is accompanied by the withdrawal of treatments, including artificial nutrition and hydration. And even if it is not intended to cause death, it can contribute to shortening life. Death may occur within days, or even hours, thereafter. “But the elements of intent and timing allow it to be distinguished from medically administered death. The law thus protects the living. The legislation avoids an act that would weigh heavily on the conscience of those who carry it out , ” explains François Vialla, professor of law and director of the Center for Law and Health 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 permitted.
Personalized Support
But is euthanasia really at the heart of the debate? Perhaps the issue needs to be reexamined… When a person at the end of life asks for assisted suicide or euthanasia, they are expressing, above all, a need for care.“It’s an expression that something is wrong for the dying person, ”explains Camille Abettan, a philosopher at the Languedoc-Roussillon Regional Center for Ethical Reflection (ERE). “When caregivers take the time to provide support—using modern techniques to alleviate suffering—the request for euthanasia almost always disappears.”
Being surrounded by loved ones, finding relief from physical pain and breathing difficulties… the range of palliative care 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. Among the central needs of dying people, now as always, is support. “Generally speaking, everyone agrees that a good end of life is one in which medical and care teams have time to provide compassionate support,” summarizes the philosopher.
The least bad solution
As for end-of-life cases that have gone to court and received media attention, they are actually quite rare.“In the vast majority of situations, the bond of trust between healthcare providers, the person at the end of life, and their loved ones is strong enough to prevent legal disputes, ”explains François Vialla. “The rare lawsuits—two since the 2016 law and, of course, the highly publicized case of Mr. Vincent L. —stem from a lack of understanding of the laws and a failure by healthcare providers to follow procedures, not from a lack of compassion or humanity.”
Ensuring that medical teams can fully understand and apply the law is therefore a priority…“With this in mind, the Center for Law and Health at the University of Montpellier has been offering training courses since the 2005 law took effect,” says François Vialla.“Training programs exist, but we need to carve out time in healthcare providers’ already overloaded daily schedules so they can take advantage of them ,” urges Camille Abettan.
And what happens when disagreements arise within the medical team about the “right decision to make”? To obtain ethical guidance, they can consult the hospital’s local ethics committee. This multidisciplinary team of doctors, healthcare providers, lawyers, philosophers, and ethics specialists offers insights that generally help resolve deadlocks.“It’s a matter of considering, for a specific situation, what would be the least bad solution. It’s very rare for a solution to be obvious. It’s never ideal,” the philosopher summarizes.
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