End of life: despite the development of palliative care, inequalities in access persist in France

Emmanuel Macron finally presented his bill on assisted dying, awaited for several months

End of life: despite the development of palliative care, inequalities in access persist in France

Emmanuel Macron finally presented his bill on assisted dying, awaited for several months. In an interview published on Sunday March 10 by Libération and La Croix, the Head of State details the modalities which will medically govern this approach. The text should be examined on May 27 by MEPs.

The presentation of another part of the bill, concerning “support”, that is to say palliative care and pain management, initially planned for January, was postponed until the end of March . Pending the publication of this ten-year strategy, accompanied by additional funds, a ministerial circular aimed at better structuring this care was published in June 2023 by the Ministry of Health.

The palliative care project is urgent. France, faced with an aging population, is still "not up to the challenge", underlined the citizens' convention on the end of life. Only 30% of patients who need it have access to palliative care in France, according to the French Society for Support and Palliative Care (SFAP). The cause: an unequal distribution of specialized structures across the territory, too few caregivers, and a palliative culture that is still poorly perceived within society and the medical profession.

The provision of palliative care has doubled over the last twenty years, notably under the impetus of national plans launched since 1999. At the end of 2021, there were 7,546 beds allocated to palliative care in hospitals ( 11.1 beds per 100,000 inhabitants), compared to 4,012 beds in 2007.

Three quarters of these beds (5,566) are located in hospital departments facing end of life. These are called “identified palliative care beds” (LISP); they are located in hospital departments of oncology, geriatrics, cardiology, etc., whose activity is not exclusively linked to palliative care.

The other beds are attached to “palliative care units” (USP), reference structures which accommodate patients whose state of health is complex and requires a specialized hospital approach. The number of these specialized structures also almost doubled between 2006 and 2021.

Finally, the number of “mobile palliative care teams” (EMSP) has increased by 20% in twenty years, from 350 in 2007 to 420 in 2021. Bringing together different categories of professionals (doctor, nurse, psychologist, etc.) , they support the healthcare teams of one or more establishments, to offer support to the patient at the end of life. They can also come to his home, to his bedside.

If the situation has improved since the early 2000s, “the momentum must be nuanced”, underlined in 2021 a Senate report, which echoed the conclusions of the general inspection of social affairs. The latter noted in 2019 “a slowdown in the dynamics of the first four plans and the permanence of many complex fundamental questions, linked in particular to the environment of the health system”. And to note that there “still does not exist a fair and equitable territorial network”.

The palliative care offer suffers from unequal distribution in France. While the majority of departments have units specialized in palliative care, twenty-one of them (Ardennes, Cher, Corrèze, Creuse, Eure-et-Loir, Gers, Indre, Jura, Lot, Lozère, Haute -Marne, Mayenne, Meuse, Orne, Pyrénées-Orientales, Haute-Saône, Sarthe, Tarn-et-Garonne, Vosges, Guyana, Mayotte) are still without it.

“It’s largely insufficient,” regrets Ségolène Perruchio, head of the palliative care department at the Rives-de-Seine hospital center in Puteaux (Hauts-de-Seine). “If you are at the end of your life, neither you nor your loved ones can afford to drive three hours to go to the unit in the next department,” emphasizes Dr. Perruchio. This absence of cutting-edge structures is all the more detrimental since, among the departments without them, territories such as Cher, Indre or Eure-et-Loir are affected by medical desertification.

The distribution of beds identified for palliative care within hospital services (LISPs) is also uneven. On average, France has 8.2 beds per 100,000 inhabitants. But twenty-seven departments only have 6.5 beds on average. The overseas territories, such as Martinique, Reunion, or Guyana, are among the worst off, with even half as many beds (less than 3.5 per 100,000 inhabitants), while Mayotte has none.

Fortunately, the LISP offer is rather well developed in the majority of departments without a specialized unit, such as Gers, with more than 11.3 beds per 100,000 inhabitants.

However, this “form of compensation”, as the authors of the senatorial report describe it, is not “a fully satisfactory alternative”. Although there are identified palliative care beds throughout the country, the care of patients, the quality of care provided and the palliative culture of caregivers are not necessarily equivalent to those of specialized units. “These beds are heterogeneous from one establishment to another,” adds Ségolène Perruchio. And to deplore a lack of State control: “Certain establishments use the allocated resources to make up for the abysmal deficits of their hospitals without any concrete action put in place, while conversely, others put crazy energy with few resources to guarantee a good reception to patients. »

The insufficiency of nursing staff in palliative care structures also hinders the proper support of patients at the end of life. “We are facing a tense medical demographic with a number of vacant positions estimated at 150 and a quarter of palliative care doctors leaving their positions within five years,” recognized the Ministry of Health in 2021, emphasizing that the doctors with skills and experience in palliative care “represent less than 2% of hospital practitioners.” Even in residential establishments for dependent elderly people (Ehpad), only 15% of coordinating doctors hold a university degree specializing in palliative care.

The 2019 figures are revealing on this subject. Within a specialized unit, on average for 10 beds, there were 1.6 doctors, 0.5 health managers, 7.2 nurses, 0.5 psychologists and 6.8 nursing assistants, a difference of 30 % with the theoretical numbers recommended in the new circular from the Ministry of Health. The shortage also affects mobile palliative care teams.

These working conditions limit “the capacity of specialized teams to take care of new patients or force them to (…) degraded follow-up”, notes the senatorial report. For Ségolène Perruchio, the fragility of the palliative care provision is “a reflection of the worsening of the provision of care in general”.

Experts agree that beyond political will and means, it is the very image of palliative medicine that needs to be rethought. First within the medical profession, and more generally within society.

Often put in opposition to curative medicine, palliative medicine remains very poorly regarded among caregivers; death is still perceived as the failure of a therapeutic journey. “In France, we have university degrees, but we do not have a chair or sector truly dedicated to palliative medicine like in other countries,” regrets Giovanna Marsico, director of the National Center for Palliative and Ending Care. of life. “During their studies, medical students are confronted too late, not long enough with palliative medicine, and remain little aware of its importance,” also deplores Ségolène Perruchio.

The two specialists call for palliative care to be fully included in the training of medical students, in order to encourage the emergence of a true culture of palliative care among future caregivers.