End of life. How can we heal when we can no longer heal?

Palliative care, how many units? On March 27, the question arose in the Senate where Catherine Vautrin, Minister of Labor, Health and Solidarity, questioned on the next strategy for the deployment of palliative care, reviewed the accounts. Today, even with the latest opening on March 15, in Corrèze, of a palliative care unit (USP), twenty departments are still waiting to be equipped with one. The recent closure of Houdan hospital, the only public unit in Yvelines, constitutes “a counter-example” which will be corrected from April, the minister also assured. Despite progress – the provision of palliative care has increased by 30% since 2015, according to the Court of Auditors' report last July – only 50% of needs are covered. This blatant lack of resources is not, however, enough to explain the slow diffusion of palliative culture in the medical profession.

Having moved from intensive care to general practitioner activity, before specializing in palliative care in the early 1990s, Claude Grange, today an expert for the Clariane group and independent trainer*, evokes a “paradigm change” between curative medicine and palliative medicine. There is no question of opposing the two approaches: it is important to understand what “medicine of the incurable” represents for a practitioner trained to do everything possible to counter the disease.

Measure the products correctly

Taking charge of the physical pain and psychological suffering of the patient and their loved ones, supporting them in all aspects of their life, ensuring ongoing care and adopting an interdisciplinary team working style, everything is there. Against pain, “all doctors have the same arsenal of medication,” explains Claude Grange, “but many are reluctant to increase the doses. Handling opioids requires skills and knowledge that many doctors do not possess sufficiently. Used at the right dose, these products do not create respiratory distress. When the symptoms we treat become refractory to any treatment, we reduce the patient's vigilance through different sedations, reversible or not, more or less deep, and of variable duration. Obtaining the patient's consent is also a criterion. The confusion between all these sedations still exists too often.” As for providing continuous care, it is impossible for a doctor alone. “He needs to know what is said to the nurse, the nursing assistants and the volunteers, especially since the time spent with a patient in palliative care is inversely proportional to the hierarchy. Teamwork is essential,” emphasizes Claude Grange. Hence a freedom of speech in these teams which surprises certain practitioners trained in the old school.

Hence, also, the difficulty of the more solitary practice of attending physicians. “Palliative care is the epitome of care that cannot be done alone,” confirms Chantal Prat, a retired general practitioner in Saint-Denis (Seine-Saint-Denis), who has followed several families out of four, sometimes five. generations, accompanying certain patients until their death. She was able to do so because a palliative care network existed in her town. “Without his support, I would have done much worse. It also serves to relieve us of guilt when we fear having supported the person badly,” she believes. Despite the difficulty, the treatment can be successful: “My wife, who died eleven years ago of melanoma, received palliative care at home which was effective. I asked her if she was suffering, she always told me no,” testifies Jean-Marie, reader of Hauts-de-France.

Advanced training

Today, the excellence of palliative care units contributes to shaping the representations and expectations of the French on how to die “well”. “Respect for the doctor, the caregivers, single room, free hours, and even overnight stay possible for the family, prayers accompanied by a volunteer… what balm, what appeasement after all these years hurting the heart and soul. Have I thanked all these people enough? I am still supported by their action,” writes Christiane, 89, who testifies to her husband’s palliative care at the Charles-Foix hospital in Ivry-sur-Seine (Val-de-Marne). This palliative approach does not, however, remain confined to USPs, nor is it reserved for people at the end of life. USPs are primarily places dedicated to complex medical and socio-familial situations.

In 2024, too many practitioners still cite “We don't know how to do it”, which should be remedied by the creation of a university sector. Élise Perceau-Chambard, head of the palliative care department at Lyon Sud hospital, is one of the twelve associate professors who currently train students (as part of initial training) and caregivers (in continuing education) in palliative care. Twelve… for all of France. “The initial training depends on each medical school,” she indicates, “but, in the common core of a 2nd cycle medical student, the approaches to palliative care and pain represent six hours over six years. Other courses in ethical questioning or human and social sciences may question the end of life, but that is not much. Added to this are optional university diplomas (DU) and specialized transversal training in palliative care open to postgraduate students. » She herself supervises a DU in Lyon and a joint interuniversity diploma in Lyon, Clermont-Ferrand, Saint-Étienne and Grenoble. “Things are moving forward,” she notes, “since a 2017 circular imposed the establishment of interdisciplinary teaching, but all these systems remain very local. In Lyon, for example, we have built joint clinical teaching with schools of nursing, physiotherapy and the faculty of psychology. And we aim for every medical student to have completed an internship in a palliative care structure during their first six years. “. But training future generations of doctors will take time. Until then, the task of raising awareness among their colleagues will continue to rest on mobile intrahospital teams, such as at the Western Cancer Institute in Angers. (read opposite).

* Author of the book The last breath (Ed. Gallimard). The documentary Living, on his last summer at USP de Houdan is broadcast on publicsenat.fr.