TESTIMONY. “It’s the learning of life rather than death”: the poignant story of a palliative care volunteer

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Her first novel dealt – among other things – with expatriation, an adventure that Laure de Pierrefeu, a self-entrepreneur in her fifties, knew well. This second book is also rooted in the personal experience of the mother. The forgotten scarf, published on August 31 by City editions, tells the story of Claire, a volunteer who accompanies patients at the end of life, and her meeting with a patient, Henri. “The plot begins with this encounter between a man on his deathbed and a widow, stuck in her widowhood. Both will help each other, there will be a path of rebirth, of returning to life. life for her, and appeasement for him”, explains the author.

The setting of the story, particular, but “romantic” of the palliative care unit was directly inspired by his experience. “It’s what I experienced while accompanying palliative care, and the mourning that follows, that made me want to place my novel there, because it’s a very special moment, with a of intensity, of counting… And I have witnessed incredible life stories”, she states. “It is an extraordinary material, and at the same time, a reality that is unknown.”

About ten years ago, on her return from a long stay abroad, Laure de Pierrefeu decided to get involved in voluntary action. “I was very marked by a meeting with a volunteer in palliative care, and she said this sentence to me which marked me and which I reproduced in my book: ‘you never know what you give, but you know what you get.’ She spoke about it with a lot of warmth and humanity, and I said to myself, it’s a hell of a challenge. I wanted to go see it closer,” she says.

Initially, when she decided to volunteer, Laure had to deal with the doubts and misunderstandings of those close to her.

“When I told my son that I wanted to do this type of volunteering, he said to me: ‘Can’t you volunteer for more gay stuff?’ entourage, people wonder what we’re going to do in there, they think it’s creepy, even a little voyeuristic… But that’s not it at all. The end of life is life with all that it has that is tragic, beautiful, comic…”, says the author.

Her novel, and her characters, are directly inspired by situations that she has truly experienced, and personalities that she has truly encountered.

“What I say about this meeting with this old man, I almost lived it like that, this meeting marked me a lot, like everything I talk about in the book”, continues Laure de Pierrefeu, for whom “he there is no hierarchy of moments, which are all very strong”. Even if she rubbed shoulders with hundreds of patients, she still manages to remember, today, certain faces, certain situations…

“There are sometimes comical things, funny, poignant, moving, and even destabilizing moments,” adds the fifty-year-old.

For her, however, the reality of palliative care volunteers is still largely unknown. “However, it is the only type of volunteering that is compulsory by law. Any bed, any palliative care team, must benefit from the presence of volunteers. We are 10,000 in France, it is an important presence”, notes Laura de Pierrefeu.

But then, what can their daily life look like, precisely?

First of all, the author informs us, one does not become a palliative care volunteer overnight.

“There is a very serious recruitment process, and mandatory training. And then, all volunteers must then be trained continuously, and supervised. We are seen by psychologists every 6 months, to check that we are living this good,” she continued.

Because the end of life is not an easy spectacle. And volunteer work requires many adjustments.

For patients, in fact, the volunteer has a special role and a special place in the care process. “We are not there to advise, to console. We are not carers either, we do not have a white coat. So there is a form of absolute neutrality”, explains Laure de Pierrefeu.

With them, patients are sometimes more talkative than with their relatives, and more comfortable than with caregivers. “We can be told everything, continues the author. We sometimes collect confidences, testimonies, patients reveal to us the things that they have not been able to tell their loved ones sometimes for 50 years. short to some of their questions, which they do not want to overwhelm their loved ones”.

The relationship, according to Laure, is imbued with emotion and sensitivity. “You should never impose yourself but be present, in a kind of active listening, of false passivity. Obviously, you remain touched and you will be until the end. But when you enter a room, you let your brain in the locker room”, relates the fifty-year-old.

The experience is, whatever the case, very rich, according to Laure de Pierrefeu.

“It’s a space of freedom, intensity and authenticity, we only live in the present moment. And these moments, which are, I hope, positive for them, and for oneself, c “It’s a return to the sources, it’s also finding yourself, and that’s very strong. It brought me a lot, delivers the author. “We have a lot to learn from people who are going to die, and a lot to give them, but also much to receive from them”.

Rubbing shoulders with death on a daily basis also allowed him to approach the question from a new angle, far from the pessimism that could be attributed to the context.

“When we witness, in fact, the death of certain patients, we know that death is present, but we remain ‘outside’, we are not the relatives of the patient. This does not mean that we will live. better the death of our loved ones to us. On the other hand, there is a learning of life, rather than death”, assures the author. For her, learning to die is above all learning to live. “There is this vital force, which we see that it is present until the last moment, in very small things, and it is rather a celebration of life”, she continues.

And then, by experiencing the life of the service as closely as possible, and the course of care for the sick, Laure De Pierrefeu admits to being somewhat reassured.

But is this type of volunteering for everyone? For Laure, there is only one question to ask yourself before starting. “Why do I want to do that? You have to be honest, that you have a somewhat selfish personal motivation, it’s legitimate, volunteering must also benefit the volunteer… And then you have to let yourself be carried away by the system recruitment which is very well done,” she says.

For her part, she feared, in her early days, to “crack” too easily. “I have confidence, but I’m also very emotional, explains Laure de Pierffeu. And I said to myself: what am I going to do? In reality, I felt that I was fine. If I cry sometimes with a patient in a room, I’m not ashamed of it. But you shouldn’t burst into tears at the slightest touch either”.

For her, if you have to know how to control your emotions to a minimum, “sensitive people have their place in palliative care. On the contrary: you have to keep your emotions, you have to be yourself fully”.

Her novel is not just about palliative care, quite the contrary. “There is a main plot that develops in this place, but that overflows and touches on many other subjects. It is important for me to tell the authentic, real things, with twists, intrigues, which are tied, unravel, intertwine, and characters with real depth. What interests me particularly is the human, the relationships between people, describes Laure de Pierrefeu. It remains a work of fiction, but I I wanted to create something embodied, where you can immerse yourself, identify yourself”.

But the author also wishes, with her story, to give a fairer view of this often misunderstood service in our hospitals.

“Palliative care means taking care of someone independently of a curative aim, to improve the patient’s quality of life. And this can take place throughout life. There is a lack of knowledge, and a fear of the word “palliative care”, as a synonym for announced death, but it’s more complex than that. We don’t necessarily die there, there are patients who come out, “says the author.

She salutes the remarkable work of certain care units, but regrets that “30 to 40%” of people who need this care do not yet benefit from it. However, she fears that the citizens’ convention on the end of life, which was announced by Emmanuel Macron and should take place next October, will tackle the problem in the wrong way.

Laure de Pierrefeu’s novel, The Forgotten Scarf, is available from City editions.