five questions on palliative “supportive care” that the government wants to develop

Objective: to guarantee quality care for all French people condemned by an incurable illness. The government is erecting the second pillar of its project “French end-of-life model”, a month after Emmanuel Macron’s announcements on assisted dying. The Minister of Health, Catherine Vautrin, presented her strategy to develop “supportive care”Saturday April 6, in an interview with World.

“In 2034, we will have 2.7 billion euros devoted to supportive care. That is 1.1 billion more than today”announced Catherine Vautrin. “We need to go further in the management of pain in its entirety and for all audiences, including children”she justified. “Before assisted dying, the French end-of-life model is first and foremost an ambitious policy of strengthening palliative care and support,” praised the minister.

With an unprecedented ambition, over ten years (2024-2034), this strategy also endorses a new name, abandoning the palliative notion, too often associated with short-term death: “supportive care”. Franceinfo explains.

1 What is palliative care?

Palliative care is for people with serious illness, especially in the advanced or terminal stages. Unlike curative care, which is no longer of much help, palliative care is not intended to cure patients, but to support them as best as possible. They place listening at the center of the care relationship, focusing on the general condition of the patient, more than on the illness itself.

“Palliative care aims to relieve pain, soothe psychological suffering, safeguard the dignity of the sick person and support those around them.”

Public Health Code, article L1110-10

At the hospital, patients can be accommodated in one of the 171 palliative care units (PUS) in the country, reserved for the most complex care. These cutting-edge services are made up of doctors, nurses, caregivers and other professionals offering more comprehensive support (psychologist, social worker, etc.).

Patients hospitalized in traditional departments can also benefit from palliative care thanks to mobile palliative care teams. This comfort care is also available at home or in a nursing home, with the support of a mobile team, a home hospitalization structure or even a general practitioner who has undergone specific training.

2 Why does the government want to develop them?

Access to palliative care has been a right recognized by law since 1999. However, half of the patients who could qualify for it do not benefit from it, according to an estimate from the Court of Auditors, i.e. around 180,000 left behind each year. . One in five departments does not have any palliative care unit, a situation which the executive wants to remedy by 2024 for certain departments, 2025 for others. “Today we have 1,540 beds in the palliative care units (USP); the idea is to create 220 additional beds in those that we have to open”detailed Catherine Vautrin, Saturday.

Creating around twenty additional USPs will not be enough to address inequalities in access to care. The main challenge is the training of medical and paramedical staff, who are often helpless when faced with patients at the end of their lives. This is the case at home and in nursing homes, where the palliative offer is “lacunar, even non-existent”, as noted by the Court of Auditors. An example: in 2019, three-quarters of retirement homes still had no professionals trained in palliative care, according to the National Center for Palliative and End-of-Life Care.

In addition to catching up, France must anticipate growing palliative needs, linked to the aging of the population. The number of potential beneficiaries each year could increase from 380,000 to 470,000 by 2046, an increase of 23% in two decades, according to the Court of Auditors. “The number of patients who will require palliative care will increase by 16% in ten years”estimated for her part Catherine Vautrin, with the World.

3 Why is the executive now talking about supportive care?

In December, the Minister of Health at the time, Agnès Firmin Le Bodo, very involved in the end-of-life issue, took up the proposal to create “supportive care”resulting from a report that Professor Franck Chauvin had just given him. “It’s a small revolution”, she boasted to franceinfo. This new name aims to relegate palliative care to “strictly medical care intended to treat pain”, which will now be included in this broader concept, according to the executive. Changing the name helps to highlight support more “early” And “overall” patients and their loved ones.

“This new term aims to change the vision that the French have of palliative care, too often associated with the last weeks of life.”

Franck Chauvin, author of the report “Towards a French model of supportive care”

at franceinfo

“The idea is also to move away from the image of very medical and hospital care, in units specialized”, defends Franck Chauvin. This former president of the High Council of Public Health thus recommended developing home care and building with each patient, from the first stages of their illness, a “personalized support plan”. To avoid certain unnecessary hospitalizations, he also called for creating “support homes”less medicalized reception areas that Emmanuel Macron has since committed to setting up.

4 Is palliative care a sufficient response to the suffering of patients at the end of life?

In most situations, quality care helps alleviate the suffering and anxieties of patients, including those who express the wish to end it. A study published in 2023, however, showed the persistence of certain requests for euthanasia or assisted suicide among patients hospitalized in palliative care units. “Faced with certain unrelievable suffering, we sometimes reach our own limits, even with good support and good resources,” confirms the head of the mobile team at the Parisian Pitié-Salpêtrière hospital, Michèle Lévy-Soussan.

“Palliative care does not solve all suffering.”

Michèle Lévy-Soussan, head of a mobile palliative care team

at franceinfo

In 2022, the National Consultative Ethics Committee also estimated that certain patients “do not find a solution to their distress” within the current legal framework. According to this body, palliative care can offer a satisfactory response in the last days of life, but not necessarily when the vital prognosis is engaged in the medium term.

In 2023, in turn, the members of the citizens’ convention on the end of life have mainly recognized the limits of palliative care and called for active assistance in dying to be authorized. A minority group of citizens, however, felt that, “properly implemented, the current Claeys-Leonetti law could be sufficient”especially since “research will further progress to better treat intractable pain in the years to come”.

5 Is active assistance in dying contrary to palliative care?

In response to the observation that “palliative care cannot do everything”, the government wants to allow certain patients to benefit from “assisted death”. He intends, in the same bill, to include several measures of his strategy for developing supportive care, which irritates some caregivers.

Palliative care professionals, led by their learned society, Sfap, are among the most ardent opponents of euthanasia and assisted suicide. They are 85% against it, according to an OpinionWay survey for Sfap (in PDF) carried out in 2022. “Giving death is not treatment”insists their spokesperson, Claire Fourcade, who readily quotes this extract from the definition of palliative care from the World Health Organization (WHO):

“Palliative care does not intend to hasten or postpone death.”

World Health Organization

Attached to “respect for life”Sfap says it defends the values ​​of “fraternity” and of “non-abandonment” sick people. She fears that active assistance in dying will become an easy solution to suffering, to the detriment of palliative care, which is more complex and more expensive. She is also worried about “insidious pressure” which could be exercised on the most fragile and finally fears a vocations crisis, because “the doctor cannot be the one who treats and the one who kills”.

Other professionals are more open to a new law. In the non-profit private sector, 29% of doctors and 57% of other palliative care caregivers are in favor of assisted dying, according to an opinion survey conducted in 2022 among members of Fehap, the sector’s leading federation. Some of the “palliativists” even say they are ready to make the last gesture, like some of their colleagues abroad. In Belgium, euthanasia is carried out in palliative care units. “I don’t shorten life, only agony”, explains doctor Corinne Van Oost to franceinfo. For these caregivers, killing can be considered as the ultimate care offered to certain patients.