“It’s not death that creates suffering; it’s suffering that creates the desire or the need to die.”

Testimonies from Eduardo Berti's "Medico-Literary" Residency at a Palliative Care Unit in the University Hospital Centre in Rouen, France

Eduardo Berti’s An Ideal Presence, translated from the French by Daniel Levin Becker, compiles a series of slightly fictionalized and lightly interwoven testimonials from the staff and volunteers of a hospital’s palliative care unit. As they ruminate on their personal experiences, their methodologies, their attachments and aversions and ways of looking after themselves after the shift is over, what emerges is a uniquely empathetic and humane portrayal of care at the end of life, by turns philosophical and pragmatic but always compassionate.

An Ideal Presence is out next week from the brand-new Oakland- and Paris-based indie press Fern Books.

Solène Halys
Nursing aide

I have a very simple method for measuring my stress and exhaustion: when the beep-beep of the call bell irritates me to the point of driving me crazy, it means I can’t take it anymore. Of course, it doesn’t just depend on me. During some periods, we receive three or four patients at the same time who are very demanding, so the bell rings endlessly. It’s difficult, I’ll admit, when a patient calls you ten times in a row in the space of an hour but doesn’t have anything concrete to ask of you. You try to smile, to ask questions: “Yes, madame, yes, monsieur, what can I do for you?” and sometimes they don’t do anything but gaze at you, mouth open, happy to see someone looking in on them. You’ve heard the bell, right? It’s shrill, piercing like a syringe… Sometimes I hear it in my car when I’m going home. Sometimes I hear it in the shower. Sometimes I dream about it. Beep beep beep. The bell. Last week, I had a nightmare: the unit was completely empty, all the beds unoccupied, nobody in the halls, I was alone, all alone, but I heard the bell and I opened and opened the doors, in vain… I told my husband about it at breakfast. “I think, Solène,” he said, “it’s time to take a vacation.”

Sylvie Compère

Relations between doctors and caregiving personnel can be tense. Doctors criticize nurses and nursing aides for being too emotional; they criticize us, on the other hand, for being too impersonal. It’s true that some doctors will say “I’ll be back, I’ve got to go see a pancreas,” that they don’t see the whole person, only the sick parts—the pathology. Obviously you can’t generalize. You’ll find all types: doctors convinced of the accuracy of what is in my opinion a disgusting metaphor (that they’re the brain of the unit and that the nurses and nursing aides are the arms and heart), nurses who think they know more than us, etc. There is ultimately a great misunderstanding that comes from a false perception: nurses can spend an hour a day with each patient; we spend barely ten or fifteen minutes with them, because we have other things to do. Things that also affect the patients, but this relative invisibility leads some nurses to think that we don’t care very much, that we’re less engaged than they are.

Things are better these days. Twenty years ago, when I started working in hospitals, I had some rather aggressive experiences. I spent a few years at a hospital in Lille where there was a rumor that the doctors were taking bets on the health of certain patients. Bets for money, I mean. Bets about their date and time of death, for instance. And that they were wagering astronomical amounts. This was false, complete nonsense. But the rumor blew up so much that a tabloid published a little article on the subject. The article went so far as to imagine that a doctor could hasten the death of a patient in order to win a bet or help one of his friends win… hell of a get-rich-quick scheme! The older doctors got quite angry and claimed the nurses had started the rumor. Me, I don’t believe so. It was an urban legend, as they say. That gives you a good idea of the situation.

Anne-Laure Belmont

From experience, I dare say most of the people who work in the unit are opposed to euthanasia. In my view, people ask to die mainly because they can’t deal with great physical suffering. But once the physical suffering is relieved, the request disappears… I’ve seen this even in cases where the patient is confined to his bed. It’s interesting. Contrary to certain received ideas, it’s not death that creates suffering; it’s suffering that creates the desire or the need to die.

Hélène Dampierre

I’m in the middle of a conversation with him, talking freely. Since he arrived here two weeks ago, it’s already become a routine: we talk about this and that, about life in general. And then, without meaning to, just totally naturally, I use the informal toi with him. Right away I want to backpedal—but how? I know I’ve crossed the line. And yet he seems delighted: he wants to be informal with me too. And it becomes the custom between us. All the same, I mention it to Madame Terwilliger. “What’s done is done, Hélène,” she tells me. It’s too late now. These things happen. And after all why not? Still, in the days that follow, I can tell it’s created an imbalance with my coworkers. I’m the only one he uses toi with.

A week later, during an ordinary conversation, he lets slip: “It’s nice to be informal with each other. But I advise you not to become my friend, because soon you’re going to lose me.” He says the words calmly. With a serene anger. With a mix of bitterness and resignation. And I stay there, speechless. If there’s one thing you learn quickly in this line of work, it’s to keep quiet when there’s really no way to answer.

Pascale Rambert

People avoid each other in the family room. They do it under the pretext, which isn’t all that false, of not bothering others. They do it most of all, in truth, because their own pain is enough for them.

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