It is a nursing home where, twice a month, a distribution of oysters is organized, accompanied by white wine. A nursing home where there are rooms… without beds. Instead, a comfortable armchair, installed not too far from the window. It’s not that the Marie-Galène health center lacks equipment, no. But in this wing of the building, palliative care is provided on an outpatient basis, in a day hospital, on a half-day basis. Thirty to forty patients are currently being followed.
In the service, that day, there is Aurélien, the companion of Mrs. S. She was taken care of at Marie-Galène in October 2021, on the recommendation of her oncologist from the Bordeaux University Hospital. “It was very shortly after the discovery of his glioblastoma (brain cancer, Ed.)”, remembers Aurélien. In the day hospital, patients come to relieve their symptoms (pain, respiratory problems, etc.) or change a dressing, consult a psychomotrician or speak with a psychologist. They can also benefit from non-drug “support care”, such as art therapy or hypnosis.
Accompany, without healing
Like all palliative care, day hospital follow-up is not intended to cure, but to ” to accompany ” and “Improving the patient’s quality of life”, recalls Emmanuel de Larivière, head of the unit. Even if it means getting out of the purely medical to offer social support (housekeeper) or support loved ones. “Without that, I would never have held on”, remembers Alain Millet, whose wife was followed in 2020.
Palliative care patients returning home at the end of the day? “It does not necessarily correspond to the idea that we have of this care”, recognizes Fabienne Teillet, the coordinating nurse. The palliative, very often, is associated with the last weeks of life.
As a result, discussing such care earlier is tricky and “can be scary, explains the nurse. Aurélien confirms: “When we talk to you about it, at the start, we deduce that the fight is already lost. » This word, “palliative”, “sometimes serves us”, admits Emmanuel de Larivière. During the first contact, he specifies, it is not always pronounced.
But there are many among the professionals in the sector to plead for the implementation of this care at an early stage. Not from the start of the disease – except when the teams know it is incurable – but “as soon as the pathology begins to elude treatment», specifies the doctor, for example when a cancer metastasizes. But before the patient needs to be hospitalized – Marie-Galène has in this case a conventional palliative care unit which allows the care of patients at the very end of life.
“One of our patients comes to all of her appointments in stilettos.says the team. We made it a barometer. The day she comes with flat heels, it will be a sign that she is less well. » Everyone has to adapt to the rhythm of the patient. With the idea of contributing to keeping the patient at home for as long as possible, if he has the desire and the energy to do so.
A type of support to be developed
The Marie-Galène day hospital will celebrate its 10th anniversary next year. “This type of accompaniment is not so widespread”, regrets Emmanuel de Larivière. It must be said that the exercise has its constraints: the lack of staff, restricted hours, the obligation of tight coordination between the palliative teams and the patient’s other caregivers. Developing them is, however, one of the avenues recommended by the fifth national plan for the development of palliative care, which is currently underway.
Because for the teams, the game is worth the candle. The day hospital, in early access, “is another way to make palliative care accessible”, argues Fabienne Teillet. Today, almost half of the people who could benefit from palliative care do not have access to it.
A review several times postponed
In June 2021, the National Consultative Ethics Committee took up the subject of the end of life, wishing “reopening ethical reflection in this area”.
It was first expected for the end of 2021. Then in February 2022. But international events, the partial renewal of its members, then the fear of political recovery during the campaign have upset the calendar.
Thursday, June 30, the text will therefore be examined and discussed by members who contributed to its drafting, but also by new recruits. If it is not voted on the same day, its examination will be postponed until the start of the school year.