Today, Francine is less bad. This morning, after the treatments and a balneotherapy session to the sound of Glenn Miller, her favorite music, she put on her favorite jogging. Relaxed on her bed, she even finds the strength to tell the story of the obstacle course which brought her here on February 9, in the blue room of the palliative care unit of the Houdan hospital (Yvelines), at the west of Paris.
Affected by breast cancer detected in 2009, Francine fought for a long time against the disease. Rays, chemo, removal of the tumor: in 2017, the doctors announced a remission which offered him a few years of respite. Until she feels a heaviness in her stomach, difficulty breathing, a loss of appetite, like a vital energy that is running out. Hospitalized in Dreux (Eure-et-Loir), the diagnosis of oncologists is clear: recurrence with metastases to the lungs, liver and peritoneum, the membrane that lines the abdomen and its organs.
“Suffering is a very personal thing”
Pain ? “It’s okay, she’s bearable”, assures the 78-year-old lady who refuses morphine which could calm her down. “The most difficult thing is the anxieties that prevent me from sleeping. Before, I had an easy sleep,” she says. “Suffering is a very personal thing. Some are totally intolerant. Others prefer to endure a dose of pain which gives them the feeling of still being alive”, underlines, in an aside, doctor Estelle Destrée, head of the service.
In Houdan, as in all palliative care units in France, we welcome patients whose care is particularly complex: patients with terminal cancer, polypathologies or organ deficiencies which are life-threatening, incurable neurological diseases. The service created in 1999 by Doctor Claude Grange in the Castile wing of the hospital has 10 beds, plus one emergency, to accommodate them.
“Their common point is the existence of refractory physical or moral suffering – often both mixed together – which has so far resisted all treatments, explains Pierre-Emmanuel Daubin, the coordinating nurse. Our role, all our know-how, is to succeed in causing it, if not eliminating it, at least in relieving it in order to preserve as much quality of life as possible. »
“Listening to the patient, and what he shows”
Before achieving this, a specific process must be followed. “First, make the correct diagnosis,” reminds Dr. Destrée. Because pain is a symptom, the sign of the disease, a call signal for the patient. This is why, in palliative care, the clinic is essential. We listen, we search, we try to understand to find the right way to improve patient comfort. »
The first step is to identify where the patient is in pain, with what intensity, for what duration. This involves determining the triggering factors, measuring the impact of pain on everyday life, its impact on emotions. “To do this, you have to listen to what the patient says but also to what he shows, which is evaluated by different scales, including the so-called “algoplus” scale, based on the examination of the face, the gaze, complaints, body positions and behavior,” continues Dr. Destrée.
The head of the department and a nurse during the morning transmission to the palliative care unit of Houdan hospital, February 17, 2023. / Delphine Le Boulaire for La Croix
So many observations made daily during the visit by one of the three doctors in the department, but also by the nurse-nurse assistant pairs who take turns day and night at the bedside of the patients. Hence the importance of transmissions between the teams and of the weekly meeting on Thursday afternoons, which make it possible to constantly reassess the patient’s condition. “A moment when everyone can take the floor to exchange views on a situation, which often avoids making mistakes”, emphasizes Pierre-Emmanuel Daubin.
Once the diagnosis has been made, it remains to define a method of management. “The right strategy is never to rush when a patient is in pain. Do not enter therapeutic escalation before having prioritized what is important to him, while taking into account the side effects. There is no drug kit that will solve everything at once, says Dr. Destrée. With each patient, it is necessary to create a “therapeutic alliance”, to install the trust which is the basis of his consent to be relieved. »
That we move forward at her own pace, respecting her wishes, is what Francine appreciates the most. “At the hospital, they treat you, but they don’t take care of you. Here, it’s total well-being. We don’t just take care of my physical pain, but also moral pain. This morning, I even woke up making plans. Places like this, there are not enough in France, ”she says.
“Treating suffering is a high-flying exercise. Between a very great humanity and a high technicality, we constantly play the tightrope walker”, summarizes Dr. Destrée. On the technical side, palliative medicine has a state-of-the-art pharmacy which Dr Josiane Bougnet, former anesthetist-resuscitator, lists as an expert: analgesics to calm physical pain, from simple paracetamol to morphine, to anxiolytics, midazolam type, which treat anxiety through antidepressants, sleeping pills and neuroleptics used for their tranquilizing and anti-delirious effects. “But there is a medicine that we use without moderation: contact,” she adds mischievously.
Caregivers provide mouth care to a patient in the palliative care unit of Houdan hospital, February 17, 2023. / Delphine Le Boulaire for La Croix
“Caring for suffering is also a lace of attentions that soothe, confirms Dominique Japiot, one of the four volunteers from the Rivage association who accompany patients. These are often simple gestures: a phone loaned to call a loved one, a mouth care with cider or champagne, a caress. Everything that allows you to preserve the desire and the pleasure that give taste to life. »
Different types of sedation
But it can also happen that the suffering overflows all the treatments envisaged, plunging the patient into uncontrollable distress. “In this case, we can consider sedation, which can alter vigilance to relieve an unbearable symptom, with the patient’s consent if possible,” explains Dr. Destrée. But this medical practice is never trivial. Powerful drugs are used that can put the patient’s life in danger, even without having wanted to. It is therefore necessary to be very rigorous in its use: to know why we do it and to what extent”, she adds.
Because not all sedation is equivalent, depending on the duration, depth and patient consent, three criteria evaluated according to the Sedapall score that must be established for each decision. This reading grid distinguishes transient sedation – from a few hours to a few days – practiced to provide care or to ensure the patient’s sleep when the drugs prove ineffective, from deep and continuous sedation. This device, framed by law, reserves it, following a collegial procedure, to patients whose vital prognosis is committed in the short term and presenting refractory suffering.
“A practice that public opinion sometimes equates to hidden euthanasia, when the difference is very clear, assures Dr. Destrée. With euthanasia, death is deliberately brought about, whereas deep and continuous sedation renders the patient unconscious until the vital functions cease due to the disease, in a natural way, even if the end of life is medicalized. »
Philippe, 48, suffering from colon cancer, could have benefited from this deep sedation, he whose condition has worsened in recent days, causing pain and anguish of death and abandonment, that nothing happens to dissipate. “Yesterday, I spoke with him about it, he was ready for this possibility, just in case. But we will not need it: since this morning, he has been in a coma which announces an imminent end and he is perfectly comfortable, ”says Estelle Destrée.
In the green room opposite that of Philippe, Rosemonde, 71, is also dying of cancer which has gradually invaded her body, breast, lung, liver, bone, even to the brain. From the corridor, we can only see the profile of a face that seems peaceful and this hand resting on a stuffed rabbit brought by a relative.
It takes the trained eye of Marine, the nurse, to distinguish the faint signs – the cold yellow complexion, the wheezing – which mark the entry into the agony phase, this moment of no return when the body still fights against death. Earlier, the carer applied hot packs to relax a stiff neck, rested her head on the pillow, put her hand on her chest.
A nurse and the head of the department take stock in the family area of the palliative care unit of Houdan hospital, February 17, 2023. / Delphine Le Boulaire for La Croix
“Agony is a word that frightens, but there are also peaceful agonies, like that of Rosemonde, underlines Pierre-Emmanuel Daubin. What hurts is for the families. You have to know how to take the time to explain to them to give meaning to this moment. The care pathway does not end with the death of the patient. »
Looking death in the face, accompanying it as best as possible, accepting its limits and those of the patient: this is the task that Guillaume, 37, performs every day, a caregiver for two and a half years in the unit. This afternoon, he made a point of showing the funeral parlor and the chapel where he regularly takes the bodies of deceased patients to the service. “If I had to define my work? I would use the formula of Claire Fourcade, the current president of the French Society for support and palliative care: it is the promise of non-abandonment. Until the end. »
Palliative care in France
The law of June 9, 1999 guarantees, in theory, anyone suffering from a serious pathology likely to lead to their death, regardless of where they live, to be able to access palliative care, the objective of which is to relieve their suffering throughout their illness and to accompany those around him.
In practice, palliative care is very insufficient and very unequal depending on the territory due to the lack of human and financial resources: in 2021, of the 350,000 French people who died in hospital – around half of the deaths – only 40% were able to benefit from palliative care.
France currently has 171 palliative care units (USP), i.e. 1,968 specialized beds, and 420 mobile teams that can travel to nursing homes or to their homes.
Twenty departments still do not have a USP. The 5th palliative care development plan plans to fill this gap in 2024.
A dinner at the Élysée on March 9
A dinner on the end of life at the Élysée, initially scheduled for February 22 and then postponed, should finally take place on Thursday March 9. Around Emmanuel Macron, 16 personalities had been invited before the postponement. Among them, representatives of religions, including the president of the Conference of Bishops of France, Éric de Moulins-Beaufort, but also supporters of active assistance in dying, such as the doctor Denis Labayle or the former deputy Alain Claeys.
🟠📽️#FinDeVie : comment @The cross will deal with the debate, @jchapuis
“We are among those who wonder and even worry about the risks of abuse. But we are above all committed to helping everyone, whatever their convictions, to enter into the complexity of the subject.” pic.twitter.com/vRLTTW8R0u
— The Cross (@LaCroix) December 8, 2022
Since this report, Rosemonde and Philippe have died.