The day before, Jean-François B., 74, was in agony. This morning, Thursday October 20, this former journalist with a body worn out by illness finds the strength to joke. “Here lies the still moving corpse of a press correspondent abroad”, he blurts out in a broken voice, from his sofa, to greet the arrival at his Parisian home of Doctor Clément Leclaire and Jean-François Lanoe, nurse, the pair sent by the Pallidom team – contraction of “care palliatives at home” – to carry out a follow-up visit.
Early Wednesday afternoon, another doctor-nurse duo from Pallidom, Claudine Maari and Philippe Caudal, went to the patient’s bedside at the request of a coordinating doctor who has been accompanying Jean-François B. for three year. This one is then in great respiratory distress, but stubbornly refuses to be hospitalized. What to do ?
Called to the rescue, the Pallidom pair negotiates with the patient a sort of “therapeutic alliance” allowing him to stay at home by placing a patch of morphine and high-dose oxygen to reduce discomfort and hope to stabilize his condition.
Resources that are sorely lacking
This is what Dr. Leclaire came to make sure of that morning, before considering what to do next. “Pallidom is an experimental device within home hospitalization (HAD) at the Assistance Publique-Hôpitaux de Paris (AP-HP)”, he explains, once the consultation is over.
“The principle is to provide, in a short time, palliative but also curative care if necessary, to patients in vital distress who want, despite everything, to stay at home or in their Ehpad. Our objective is to avoid their transfer to the emergency room, if we consider that there will be no benefit”, he summarizes.
This innovative device was born from a scientific observation: the earlier and more integrated the palliative care, the greater the benefit for the patient, in terms of quality and life time. But the means are sorely lacking. “Despite five development plans, the offer of the palliative sector remains very insufficient, especially when it comes to treating at home these symptoms of vital distress such as difficulty in breathing, severe pain, neurological disorders”, emphasizes the practitioner.
“Avoiding harm – dying in the hospital”
Hence the idea of a small group of emergency and palliative care physicians to set up a dedicated structure “emergency palliative care”born of a reflection on “the way to avoid evil-dying in the hospital”continues Dr. Leclaire, one of the caregivers behind the project.
Launched at the start of the 2021 academic year, the system currently brings together four doctors (in rotation on a full-time equivalent), four nurses, a health manager and a secretary. A reduced team to cover Paris and the Hauts-de-Seine, a basin of 3.5 million inhabitants. The team makes up for the lack of resources – some visits are made by public transport due to the lack of emergency vehicles – with creativity, passion for the profession and complicity.
“Consultation with the patient for all decisions”
After a year of existence, Dr. Leclaire displays a certain pride. “Beyond the quantified evaluations which are worth the Pallidom experiment to be renewed for three years, our assessment shows that palliative care makes sense, he points out. This meaning is drawn from the consultation with the patient for all the decisions that build his care project, beyond the technical act. Avoiding unreasonable stubbornness, especially in the elderly, is what the team shares most strongly. »
It’s 5 p.m. and the weekly service meeting has just ended. For more than two hours, the team reviewed all the patients visited during the past week. Some died peacefully at home, some could not avoid hospitalization, others will be followed for a few days by Pallidom, like Jean-François B., while waiting for another structure to take over.
In the meantime, a call has come from an Ehpad in Hauts-de-Seine for a 102-year-old resident whose condition has worsened and who must be accompanied until the end. Another day begins.
————
One year of Pallidom activity in figures
Since September 2021, the Pallidom device was requested 579 times and carried out 390 treatments which lasted, on average, three or four days.
In 70% of cases, the patient dies, peaceful at home, in the hours or days that follow. In 20% of cases, the patient improves or stabilizes. In 10% of cases, the patient is transferred to a palliative care unit. There were three emergency room transfers over the year.
In 6% of the situations, recourse to deep sedation was necessary to relieve the patient. About 5% of patients treated have expressed at some point the wish that their life would end. Two requests for euthanasia were made.