End-of-life support: a debate that concerns us all

In a context marked by an aging population, the rise of chronic diseases, and changing expectations regarding dignity and autonomy, the issue of end-of-life support represents a major challenge today. At the Nice-Matin Health Club, organized at the Pauliani Foundation, professionals from the medical-social, non-profit, and institutional sectors gathered to discuss this societal challenge.

During these discussions, a consensus emerged on the need to develop and make palliative care accessible to all, considered a fundamental right but still insufficiently available in France.

On the other hand, the legalization of assisted dying, which would mark a major ethical, medical and social break for the country, has sparked more contrasting debates.

Palliative care: support too unequal

Palliative care, which aims to preserve the quality of life of people suffering from serious illnesses, aims to relieve physical pain, but also psychological and social suffering.

According to Dr. Pauline Leroy, a doctor in the palliative care department at the Nice University Hospital, the responsibility for this type of care lies with all caregivers, whether they work in the hospital, clinic, or at home: a general practitioner can provide home care to a person at the end of their life, a nurse in a nursing home can support a resident with advanced Alzheimer's and their family...

"79% of patients at the end of their life would need palliative care, but only 40% actually have access to it. Palliative care is not just a matter for specialized units, which handle the most complex situations, but is part of comprehensive support for the patient and their family, at all levels of the healthcare system."

Strong inequalities

Access to this care remains very unequal depending on the region, as Loick Menvielle , director of the Management in Innovative Health chair at Edhec, pointed out. " To date, nearly 20 departments still do not have palliative care units. The lack of dedicated resources and structures is a major obstacle to quality support for all."

The importance of early implementation of this care

For Manon Demay, a nurse in the palliative care unit at the Nice University Hospital, palliative care " means caring until the end. It is essential to integrate it early, well before the emergency and the worsening of symptoms, in order to better support patients and their needs."

According to Dr. Aurélie Clemente , coordinating physician for the HAD Nice association, palliative care in France is still underdeveloped. " In oncology, for example, even without the goal of a cure, we combine life-prolonging treatments with palliative care for comfort. This approach should be made known from the moment of diagnosis."

Philippe Paquis, president of the departmental council of the Order of Physicians of the Alpes-Maritimes, shares this observation but also notes that there is a shortage of doctors specializing in palliative care, " the current training of future specialists is very limited."

Assisted dying: areas of uncertainty

Professor Philippe Paquis highlights the conflict between the Hippocratic Oath ( "Thou shalt not kill" ) and calls for changes to the law on end-of-life. " While some doctors are in favor of it, the majority of them—and the Medical Association—remain opposed. There is clearly an ethical issue with assisted dying." Dr. Pauline Leroy emphasizes the essential distinction between supporting patients to live fully until the end. " Offering people the opportunity to enjoy the moments that remain, even if they are uncertain, is a different approach from assisted dying. Palliative care teams encourage the creation of memories. We recently celebrated a wedding in our department."

Too polarized a debate?

Dr. Élise Gilbert of the Antoine Lacassagne Center (CAL) deplores the fact that the public debate on the end of life is often too reductive: " We are presented with the choice between 'being killed' or 'dying in agony'. There is another way: support. The Claeys-Leonetti law embodies this duty of non-abandonment, guaranteeing that no one will be abandoned to their suffering."

Prioritize the desire for life rather than death

Dr. Pauline Leroy highlights patients' resilience in the face of serious illness, illustrating how life events can transform perceptions of suffering and the end of life. "At first, people say, for example, 'I would like to die when I can no longer walk.' And then eventually, life takes over, and the desire for death fades."

On the other hand, it underlines the importance of early support to construct appropriate care plans, beyond advance directives (1).

Risks of drift

According to Loïck Menvielle, the law presents two significant areas of uncertainty, also highlighted by the High Authority for Health (HAS) . "First, the definition of "advanced vital prognosis" is not clear; we don't really know when a patient's life is considered sufficiently threatened. Then, there is the question of subjectivity: the law does not specify how to take into account both the patient's feelings and the doctor's diagnosis."

And Pauline Leroy gives a concrete example : "For example, a patient who has complicated diabetes, with painful neuropathy could be considered eligible for active assistance in dying simply because he is suffering and his illness is life-threatening. What do we do in these situations? If he is an adult, a French resident, without cognitive disorders, he meets the criteria."

For Dr. Philippe Camarasa, an anesthesiologist and intensive care specialist at Arnault Tzanck Hospital, the danger of this law is that it could be used excessively. "We've seen cases of abuse and highly contentious cases in other countries. This limitation also applies to healthcare professionals, who are there to support life, not to have their arms twisted or their hands forced with such a law."

1. Written document in which an adult indicates in advance their wishes regarding the medical care to be received or refused at the end of life, if they can no longer express themselves.