It is a highly anticipated plan in the palliative care community. Announced in March, it had been launched in April and was due to be presented at the end of May. It is finally this Wednesday, September 22, on the first day of the congress organized by the French Society for Support and Palliative Care (Sfap), that the new national plan on the end of life – the fifth of its kind – must be unveiled by the Minister of Health, Olivier Véran.
→ THE FACTS. Palliative care: a national plan to address disparities in access
Chance of the calendar, it is also the day of the cinema release of Everything went well, signed François Ozon: the – true – story of the assisted suicide of the father of the writer Emmanuèle Bernheim.
→ ANALYSIS. End of life: towards a citizen consultation?
At the heart of this telescoping, an observation repeated for years by supporters of a chosen death, but also by health professionals or families of former patients: we would die badly in France. Precisely, we would die in bad company and suffering, physically or morally.
Make an appeal and the testimonies are jostling: like that of Lara, whose father, who died of esophageal cancer at the age of 46, “Screamed in pain in his bed.” Or that of Isabelle, who witnessed her father’s two months of agony. And never forgot his body riddled with bedsores.
A still unknown legislative framework
“Die badly? If I refuse to generalize, I confirm that it can still happen. “ The one speaking is called Claire Fourcade. And if this doctor and president of Sfap turned to palliative care thirty years ago, it is precisely because, as a medical student, she had witnessed death. “Under unacceptable conditions”.
But since then, successive texts have created a legislative framework at the end of life, the most recent of which, the Claeys-Leonetti law, celebrated its fifth anniversary last February. For many, it is a law of “balance”, between the will of the patient and medical knowledge; between respect for human life and prohibition of relentless therapy. “Well applied, it could be enough to untie many dramas “, agree many professionals.
” She could. “ Only, “If no one is supposed to ignore the law, the reality is quite different”, explains Jean-Marie Gomas, co-founder of Sfap and, until recently, a pain specialist. Because the evil to die in France is rooted first of all in a “Ignorance of palliative resources”, he believes. The causes are known: lack of information, both among caregivers and the general public, training, human and material resources.
In France, only 30% of people who should benefit from palliative care actually have access to it. First of all, an unequal distribution of the 7,500 palliative care beds (2% of hospital beds) across France.
The previous plan for the development of palliative care (2015-2018) had set the objective of reaching at least one bed per 100,000 inhabitants in each department. Today, 28 are below this ratio: three because they are insufficiently staffed, and 25 because they lack any palliative care unit (PCU), exclusively dedicated to support at the end of life.
→ READ. Dying well is also a matter of social justice
However, these territories are not neglected: mobile teams take over and travel to health establishments or to their homes; beds are installed in hospital wards, where deaths are frequent. But the management is not the same and does not necessarily leave room for more complex cases.
A lack of arms
“The problem is the shortage of human resources”, notes Madeleine (1), nurse and trainer in palliative care in Paris. “In an ideal world, you would need 2.5 caregivers for every ten patients. The ratio is currently 1.6. “
→ INVESTIGATION. End of life, better known devices
In Talence, near Bordeaux, Julie Pouget, doctor at the Protestant Bagatelle health center, confirms: “In my structure (including 12 beds, editor’s note), we are three doctors, only one of whom is full-time in charge of the expanding mobile team. The operation would be optimal if there were five of us. ” Except, in a medical world that is already chronically understaffed, palliative care does not attract.
“Palliative medicine is one of the poor relatives, says Julie Pouget. Because the medical world is very curative, accepting the therapeutic impasse therefore remains considered a failure. ” Jean-Marie Gomas, from Sfap, agrees: “We are paying for years of medical omnipotence, with doctors who want to save at all costs, at the risk of unreasonable obstinacy. “
For lack of combatants, beds close or never see the light of day. The Bourges University Hospital has had doctor positions budgeted by the regional health agency (ARS) for three years. But not filled. In Toulon, the hospital’s palliative care service had to close its doors in July… and has not reopened them since. “30% of palliative care physician positions are vacant”, estimates Sfap.
In the field, it is the patient who toasts. “In my mother’s nursing home, there is no night nurse, Esther indignantly. So no one to regulate the morphine pumps. The pain does not sleep, however. ” In her palliative care center, which is nevertheless a benchmark, Madeleine, the nurse, has a hard time “sorting out” between patients. “We now only admit the most urgent cases. How to support well in these conditions? “
→ ANALYSIS. Pain at the end of life, a medical challenge
In many teams, you have to juggle guilt as well as a lack of time or material. Madeleine tells you about these dressings, “Not strong enough for some rotting cancerous wounds”, which force him to do “with the means at hand ”. Or “To send the patient elsewhere”.
In Talence, Julie Pouget admits to being “A queen of the hack”. During home care, “We don’t necessarily have all the equipment. So we are inventing, rethinking the ways and methods of administering treatments ”.
But with too much tinkering or groping, lack of training, for the less experienced, some professionals facing the end of life become mistreating. “This leads to bad dosages, bad symptom relief”, Claire Fourcade notes. However, even without being specifically admitted to palliative care, “We should all have the right to die well. Even if nothing will ever remove the tragic from this moment ”.
What answers will the plan provide? “Euthanasia cannot and must not be a solution to the absence of end-of-life support systems”, should recall Olivier Véran, during his intervention in front of the Sfap.
→ MAINTENANCE. “Palliative care, training professionals in good practices”
Work to make the sector more attractive, strengthen initial and continuing training, make hospital and home work together, spread the palliative culture throughout society… The Minister of Health knows he is expected on these subjects. Measures that must be accompanied by “Adequate means”, hopes Claire Fourcade. To improve what already exists, before any legislation proposing to go further.
The end of life in France
Palliative care, in an institution or at home,aim to relieve pain, to soothe the psychic suffering of the sick person and to support those around them.
They concern patients with serious, chronic or progressive illness life-threatening, in advanced and terminal stages.
Contrary to popular belief, palliative care should take place before the end of life. Starting early support can bring great benefit to the patient and his family, for example by offering respite stays.
154,000 people were treated by palliative medicine in 2018.Cancer is the cause of more than 70% of stays in palliative services.
Source: Atlas of palliative and end-of-life care in France, 2020.
A campaign theme for the presidential election
Mentioned by Emmanuel Macron, a “Citizens’ convention on the end of life” should ultimately not be held by the end of the quinquennium. The subject could nevertheless be debated during the presidential election: the entourage of the Head of State already makes it a “Campaign theme”. “In 2017, we made a commitment not to change the balance at the end of life in order to measure the effects of the Claeys-Leonetti law (from 2016, Editor’s note), recalls a heavyweight of the executive, favorable to active assistance in dying. But we have felt, since, an expectation of the population. On these heavy societal issues, it is important that things be said clearly during a campaign and sanctioned by the vote. “