how research and teams support parents faced with palliative care

In Rhône-Alpes, doctor Matthias Schell accompanies 250 families each year through illness and bereavement when it occurs. Pediatric oncologist, he is at the origin of the first pediatric palliative care research unit based on the needs of the patient. It was opened at the Léon Bérard cancer center in Lyon.

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“It is a medicine from the otherexplains the specialist. The child’s difficulties in managing the symptoms, the questions that the families ask themselves and how I live with the doubt of having done well to choose such treatment or should I have refused. As a result, the surveys represent the first line of research to find out what we should bring to work better, according to them”.

Drugs transmucosally rather than intravenously

A donation of 500,000 euros from the Regional Association for Children with Cancer has made it possible to launch this research, which will also look into the evolution of treatments. For example, “we have a first study on the use of a drug that we know very well by intravenous route, but which we are going to analyze by transmucosal route because children do not like injectionsintroduces Dr. Schell. Children can absorb this drug through the lining of the mouth, but there are no studies on this.

In France, there are 23 multidisciplinary teams dedicated to pediatric palliative care, including ESPPéRA in Rhône-Alpes, which supported Timothé and his family. The little boy died at home last May of leukemia at the age of six. “I can see myself hearing, ‘we’re going to introduce you to ESPPéRA’ and say to myself, ‘No, I don’t want to see them'”says Timothy’s mother, Marlène Porret.

“In ESPPéRA, there is a P which means palliative and it is not understandable. And then afterwards, it is necessary.”

Marlène Porret, mother of Timothé, died of leukemia

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“In fact, little by little, you too are advancingcontinues Marlène Porret. They help to move forward, to prepare, to know what we want, to know what your child wants. We gave the choice to our son who told us: ‘at home’. And when we think back to all that, it’s little grains of sand that warm our hearts. As sad as it can be, as painful as it can be, there are people who help you and it changes in the reconstruction of living with the absence of your child.

The follow-up of the families continues beyond the death of the child. Support groups exist and Timothé’s mother knows that she can pick up her phone at any time to confide in the palliative care team.