in the “palliative desert” of Haute-Saône, caregivers “overwhelmed” in the face of the suffering of the sick

Michel is 82 years old and he is in pain. “Kidney pain. It’s awful”he sighs. “We are quickly at an impasse with him”, recognizes, helpless, a nurse from the Vesoul hospital (Haute-Saône). Called to the rescue this Friday, June 23, mobile team palliative care (EMSP) invites himself into the service, scans the file and widens his eyes. Michel only receives morphine every eight hours. “It’s grossly underdosed”decides the doctor Anne-Laure Dugenet.

The patient is there, with his bladder cancer, his kidney failure and his pain. We promise, we will respond to his suffering. “The priority is that you have less pain. For the rest, we will see later”, states the nurse of the PMSC, Gabrielle Lima. The patient’s condition is worrying, but neither he nor his wife seem to measure it. The two caregivers are testing the waters.

– “What do you expect from doctors?
– Ben… Let them cure me.
– What if they can’t? Do you sometimes think about it?
– No. My family tells me that I will recover.”

The mobile team is also there for that: supporting professionals in difficult situations. The doctors in the nephrology department wonder if their treatments still make sense or if all this is a relentless treatment. Rather than seeking to prolong life, through protocols and suffering, the time may have come to focus on the quality of the time the patient has left to live. Treating instead of curing is the specialty of palliative care professionals.

In a report on the end of life unveiled on Wednesday June 28, the Senate calls for accelerating the deployment of this care offer throughout the territory and for increasing the training of other caregivers. Message already received by the government, which is preparing in particular a law on the end of life, promised before the fall.

Three part-time palliative physicians

Long despised in the face of all-powerful curative medicine, palliative care has enjoyed a concert of praise since Emmanuel Macron launched, in September, a project on the end of life in France. The National Advisory Council on Ethics, the Citizens’ Convention on the End of Life and the National Assembly have praised the merits of this medicine which, faced with a serious, incurable and fatal condition, calls for the patient’s comfort to be favored rather than the fight against disease. These experts are proficient in pain relief treatments and the management of physical, psychological and existential suffering. Benefiting from this care has also been a right recognized by law since 1999. But, in practice, France is far from – and the Haute-Saône even more.

This territory of Bourgogne-Franche-Comté is one of the 21 departments without palliative care units (USP), these advanced services intended to accommodate the most complex patients. For these patients, “we have to negotiate with the USPs of other departments to find a place for them”, reports the head of the EMSP of Vesoul, Christophe Petitjean. In 2022, eight patients from Haute-Saône were able to benefit from a transfer to Belfort-Trévenans (Territoire de Belfort) and Besançon (Doubs), according to the Regional Health Agency. Other patients refused to be uprooted up to a hundred kilometers from their homes, even if it meant gritting their teeth to die on their land.

Haute-Saône must also make do with seven “identified palliative care beds” (i.e. 3 per 100,000 inhabitants, against 8.2 nationally), scattered in conventional services, such as pulmonology or geriatrics. Patients are supposed to benefit from special attention, despite the uneven palliative skills within the teams. “We would like to have more of these beds, but the services should already be functioning properly“regrets Christophe Petitjean.

“There are often staff tensions. An example: we no longer have a urological surgeon at the hospital.”

Christophe Petitjean, head of the Vesoul mobile palliative care team

at franceinfo

The real expertise is to be found within the only EMSP of the department, responsible for responding to requests from hospitals in Gray, Lure, Luxeuil and Vesoul, to nursing homes, specialized reception centers and the most remote homes. To carry its good word in Haute-Saône, the team has three part-time doctors, two nurses, a psychologist and a secretary. A handful of missionaries in a land of conquest.

Progress at the hospital

At Vesoul hospital, the mobile palliative care team, born in 1999, has long preached in the desert. “The services were reluctant to involve ussays Christophe Petitjean, its founder. In oncology, in particular, there was a die-hard vision of trying everything to save the patient, even if it meant trying hard and giving rise to an excessive hope of recovery. But over the years, hospital doctors have learned to question their practices and, sometimes, to let go.

If there are a few “tough guys” defendant “life at any cost” in the services, the mobile team now wants to intensify its efforts outside the hospital. “The awareness and training of city professionals is essential to properly assess the symptoms, anticipate deterioration in the state of health and know when to contact us”pleads Delphine Brissac-Cestor, doctor within the EMSP.

“Unfortunately there are areas of Haute-Saône where the attending physicians never call on us.”

Delphine Brissac-Cestor, doctor at the EMSP

at franceinfo

In addition to the blockages of certain reluctant general practitioners, the “palliatologists” deal with another evil: medical desertification. The department has 284 doctors per 100,000 inhabitants, compared to 453 nationally, according to the Order of Physicians. However, general practitioners are the first link in palliative care. “We see the consequences every day.assures Christophe Petitjean. Most attending physicians no longer have the time to travel and participate with us in consultations at home, which would allow patients who so wish to die at home. Result: these people end up in the hospital.”

“Cats, we bite them… We suffer”

Geneviève is 80 years old and she is in pain. “Are everywhere, in the joints, in the muscles, in the tendons…” Suffering from various pathologies affecting her nerves, her brain, her heart and her immune system, this resident of Villersexel, in the south of the department, ended up relying on a general practitioner installed in the Doubs. “My doctor had left and the others didn’t want to take me, ‘file too difficult'”, she breathes. Her vital prognosis is not engaged, but, tired of fighting to consult specialists, she dreads “to slowly die. Cats, when they are too sick, we bite them… We are suffering.”

Patient suffering, Patrick Laine has seen too much. This former country doctor practiced throughout his career in Saulnot, on the edge of the Doubs, until 2021. “Life expectancy in our small regions is lower than elsewherereports the retiree. In medical deserts, there is more waiting to have access to a specialist or to go to the hospital, and therefore more suffering endured. Some could be appeased and are not, especially at the end of life.

“Where you have a medical desert, you must have a palliative desert.”

Patrick Laine, retired country doctor

at franceinfo

For lack of a successor, Patrick Laine, 73, continues to visit certain patients, on a voluntary basis. One of them died to a pharyngeal tumor in May, at her home. “She had been discharged by the hospital, which could do nothing more for her. Shehe says. His doctor didn’t move and didn’t care. When I went to see her, she said to me, crying on her kitchen table: ‘I am waiting for death'”.

“Families crack”

In theory, patients requiring heavy care at home can benefit from hospitalization at home (HAD). “Palliative care is one of our main activities”, confirms Delphine Messelet, head of the HAD in Haute-Saône. But places are expensive. “We have the same recruitment problems as elsewhere, explains this old white blouse. I only have four nurses when I’m supposed to have seven. This sometimes results in a week of waiting for hospitalizations at home and we are unable to respond to all requests.”

“For lack of palliative care, treating doctors are overwhelmed, patients suffer and families find themselves alone, angry.”

Delphine Messelet, HAD site manager in Vesoul

at franceinfo

Faced with medical desertification and reduced palliative care staff, private nurses are often on the front line. “Some situations go very well, but we also see people who are in very bad shape and who don’t get the support they deserve”laments Stéphane Fréchard, a nurse based in Lure. “Some families crack up, especially at night and on weekends, when the patient’s condition deteriorates and no one answers. They end up calling the Samu and it ends up on a stretcher in overcrowded emergency rooms.”