Pediatric Palliative Care at the Children's Hospital

The pediatric palliative care unit "Globul'Home" consists of two complementary teams: a mobile team that provides care for children at home and a coordination team dedicated to facilitating and maintaining care at home. Their goal is simple yet fundamental: to enable children to stay at home as much as possible, in the familiar environment of their home, while receiving optimal medical, paramedical, and psychosocial support.

A Long-Term Approach

This model of pediatric palliative care emphasizes long-term support, which is not limited to end-of-life care but can sometimes extend over years of follow-up. Contrary to common beliefs, this care is not reserved for the final stages of an incurable illness. While it may involve oncological conditions, it primarily addresses a wide variety of severe chronic illnesses, such as neurological, metabolic, or cardiac disorders.

In 2012, Dr. Christine Fonteyne, a pediatrician at HUDERF, founded the mobile palliative care team with a clear mission: "To provide quality, active, and comprehensive care to children with severe and incurable illnesses, while respecting their living environment and staying close to their families." This multidisciplinary team, consisting of a pediatrician, a psychologist, nurses, and a social worker, supports families at every stage to maintain an optimal quality of life for the children.

Coordinating Home Care: Essential Support

The ability for children to remain at home relies on close collaboration with independent nurses, who are often less familiar with the specific needs of pediatrics. Thanks to the ongoing support from "Globul'Home," these local caregivers receive training and continuous support to meet the unique needs of sick children. This meticulous organization allows for continuous care, 24 hours a day, strengthening the trust with families and preventing many hospitalizations.

Breaking Down Misconceptions: Palliative Care is Not Just About Cancer

Pediatric palliative care is still often incorrectly associated with cancer and imminent end-of-life situations. However, at HUDERF, 80% of children receiving palliative care suffer from complex chronic illnesses, such as neurological disorders or severe cardiac malformations. These children, far from being in a terminal phase, go through periods of stabilization and crisis, sometimes for several years.

To break these prejudices, the hospital has been organizing an annual training program for healthcare professionals for the past eight years. The aim is to raise awareness among staff from all disciplines about the culture of palliative care and to enhance skills in this essential area. The challenge is significant, but the results are evident.

Impressive Results Despite Limited Resources

In Belgium, pediatric liaison teams have been recognized since the royal decree of 2010. However, their funding remains precarious. Dr. Christine Fonteyne, pediatrician and founder of the mobile palliative care team at HUDERF, highlights the challenges: "Resources do not always keep pace. The lack of human and financial resources is a constant barrier."

Despite these constraints, the teams at HUDERF have made remarkable progress. In 2023, 90% of children receiving palliative care were able to be cared for at home until the end, compared to only 30% ten years ago. This evolution reflects the determination of these professionals, who work tirelessly every day to make the impossible possible.

Pediatric Palliative Care Team

• Pediatrician: Christine Fonteyne
• Head Nurse: Nathalie Andersson
• Nurses: Coevoet Fanny, De Beusscher Caroline, Ferquel Vanessa, Puissant Coralie, Villarroel Rojas Marcela
• Social Worker: Dominique Jadin
• Psychologist: Julie Cano Chervel

Links:

https://www.bienplusquedessoins.be/ 

huderf.be/fr/services/soins-palliatifs-pediatriques/ 

https://www.hospichild.be/a-lhopital/soins-palliatifs-pediatriques/ 

Accueil - Réseau Francophone de Soins Palliatifs Pédiatriques (pediatriepalliative.org)