Jennifer Ramos is a nurse at the Pediatric Oncology and Hematology Unit (UOHP) at HUG, certified in oncology and palliative care. She works part-time in the unit and at the same time is the palliative care referent for the UOHP, which represents 30% of activity. Jovial and so kind, she tells us about her daily life.

What is the role of a pediatric palliative care nurse?

Jennifer Ramos: As part of my role as a palliative care referent, I follow young hospital patients with a serious prognosis, when their illness is so serious or even incurable. I am well aware of leukemias and their effects, for example, but I don't know how each person and their family will live with the disease and get through it. Everyone has their own toolbox of tips to survive such a tsunami as best as possible. With humility, I accompany families and help them find what is essential for them. Palliative care is about improving the life of a patient right now. To do this, it is imperative to care for and alleviate the symptoms that the child presents. In addition to somatic care, it is important to seek to improve the quality of life of the child and those around him. When the child can return home, everything will be put in place to improve his daily life, so that his wishes and desires are respected beyond the curative. When you can't add days to life you add life to the days that are left...

Death is what palliative care is about...

J.R.: Wrong! In the expression end of life, there is “life”, we tend to forget it. Our unit is focused on people, comfort and pleasure. Palliative care consists in taking care of the daily well-being that is affected by an illness and the symptoms that result from it. The term palliative is often referred to the 3rd age but not to pediatrics. To families, I present myself as a comfort care nurse so as not to frighten them because of the preconceived ideas that circulate. Unfortunately, the word palliative has connotations and evokes the end of life in people's minds. However, some patients who had very poor life outcomes after the side effects of a transplant, for example, recovered. Today they are doing very well and we have stopped the “palliative” follow-up. There is always hope.

What differentiates palliative care from conventional nursing care?

J.R.: Time... it's the key word in the profession. We have to take the time, to be surrounded by a united team. With a new patient who has just been diagnosed with cancer, you have to take time. When a nurse is in a room with this type of patient, colleagues advance other tasks to allow him to take the time to answer questions calmly. When you put a catheter on a child, if it takes 30 minutes to get them in shape and limit trauma, you will take this crucial relationship time. At night too, we talk, we respond to parents sometimes until 2 am. It's a need, they have to empty their bags. For me, this listening and this support are part of the work of a nurse in palliative care but also in a pediatric oncology and hematology unit with all the patients we meet.

What motivates us to get involved in this field?

J.R.:Our unit can be scary when it is precisely where the patients are among the most “alive” in the hospital. At the Pediatric Oncology and Hematology Unit, the children know us, some parents have nicknamed us the aunts. They are waiting for us because we laugh a lot with them. We often dance, we play music while doing the bathroom, by doing physio, we try to bring joy. The more difficult the days are, the more pressure there is, the more you try to let go and laugh. Unlike an adult who is well aware of what is happening to him and often depressed, a child is not overwhelmed by this awareness. He stays in life. As soon as he is 3 minutes without fever, he wants to move, jump, he wants to live fairly.

The suffering of parents in the face of that of their child must be unimaginable...

J.R.: Pediatrics includes care for children as well as for parents and families. Parents don't buy in if the child doesn't like us and if the parents don't trust us the child feels bad vibes. There is a triangulation relationship between the three of us. Parents are completely devoted to their child, sometimes they have to be reminded to eat because they completely forget about themselves. When the disease does not respond to treatment, some parents search everywhere for the best studies in the United States, the most promising experimental treatments, etc... They are motivated by this hope of saving their child at all costs. As the health condition worsens, parents refocus on the child, they want the physical suffering to end. This is the worst: to see your child suffer while being unable to relieve him, with no prospect of recovery. Regular monitoring of children and families is important in order not to allow physical or moral suffering to develop. The importance here is to work with the interdisciplinary team (physiotherapists, chaplains, child psychiatrists...) to provide the most appropriate care for each situation thanks to the UOHP pediatric palliative care group (GPS) created in 2007.

Siblings are also often forgotten...

J.R.: Often siblings are put aside, parents spend their time at the bedside of sick children in the hospital by entrusting the care of the siblings to the immediate family. They are going to the most urgent and everyone is suffering enormously. That's why supporting entire families is critical. Parents are caught in a state of guilt, sometimes even towards their employers when they are not going to work, to support their child.

What aspects are the most difficult to manage in this job?

J.R.: The most difficult thing is to attend to suffering without finding a curative way to alleviate it permanently, in certain pathologies. At the nursing level, our mission is to provide relief, ideally. When you try a treatment that does not work, if the pain persists, you can feel helpless despite all the ancillary means deployed. In the event of a death, I can console myself when everything has happened calmly and the child leaves “at peace” surrounded by his family. Of course, a death always impacts us so much. But we have to keep working. It is difficult to receive this pain that tears our hearts out of us, this distress that is devastating the family. It is not the normal course of life for a child to die before his parents. The hardest thing to manage is when you are at the end of your life in a quiet room and the other patient next door is fine, you have to dance, sing. The jump is very hard. You have to constantly adapt, have a different attitude to change, and come back full of energy and positive.

After a death, does your business continue?

J.R.: Yes, I also do bereavement tracking as part of the GPS program. A presence that is prolonged, the child is dead we said goodbye to him... But for parents this perspective is unimaginable. We suggest staying in touch, meeting with 3-4 caregivers and the family, it's less intimidating than being alone. In memory of the children, we are going to have a coffee, we are going for a dog walk, we are talking during this moment. For most, the hospital remains a traumatic place where they no longer want to set foot in. It's too agitated.

What do you share with these parents after the death of their child?

J.R.: Sometimes they distance themselves from the people around them. Because they are told that it will be fine, that time will ease their suffering. Society finds it normal to go through a phase of mourning, but after a while, others do not necessarily understand that the suffering continues. And yet, it always lasts... maybe differently depending on the moment, the periods or the days...

But can you reassure us that more and more children are recovering from cancer?

J.R.: One day, a little patient asked me if a lot of children who have had cancers die? I told him that there are so many patients who recover! This is why we remember each and every one of those who left too soon... Because there are few compared to those who recover.

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