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Guideline palliative care for children

The guideline 'Palliative care for children' describes what pediatric palliative care is and what can be done about the most common complaints experienced by children. In 16 chapters the guideline indicates what is a useful treatment ('do'), what could be useful ('consider') and what is not useful ('don't do') within all domains of palliative care for children. In addition, there are numerous recommendations and references regarding psychosocial care and aftercare. The guideline provides guidance and forms, as it were, a new practice of evidence-based palliative care for children.


The first palliative care guideline for children was published in 2013. Since then a lot has changed. New developments in the Netherlands and worldwide are given a place in the new guideline. The revision was established in November 2022 through close collaboration between healthcare professionals, researchers and parents. These parents have played an important role. For example, they indicated which additions were necessary and they assessed the written texts. In this respect, the revised guideline clearly differs from the old guideline: parental input was already considerable, but this guideline has increased many times over. That's special.

What does the guideline mean for you as a healthcare professional?

Palliative care for children is by definition multidisciplinary and covers all domains: (para)medical, psychosocial, pedagogical/developmental and spiritual aspects. Within these domains, a large number of factors play a role in decisions about which treatment in the palliative or palliative terminal phase is most appropriate. The best interests of the child and the family are of course always paramount. And every child should be treated with dignity, respect and privacy. As a caregiver, you constantly consult with the child (if possible) and the parent(s) about the choices and the steps to be taken – now and in the future. You do this in a way that is understandable for the child and parent(s). The opinion and wishes of the child and the parent(s) weigh heavily in the considerations regarding all aspects of care. Not only the care for the sick child, but for the whole family, is the task of the care providers.

Network Integral Child Care

In addition to the Children's Comfort Teams, there are seven regional Networks for Integral Child Care (NIK). The NIK is a partnership between professionals from different organizations and disciplines, where care is provided at home under the final responsibility of the local main practitioner or specialist or pediatrician at the UMC. Within each NIK, a network coordinator is the first point of contact for parents, healthcare professionals and (care) organisations.

The Individual Care Plan (IZP) also regularly refers to the palliative care guideline for children. The IZP is aimed at optimized transfer from hospital to home, with a view to continuity of pediatric palliative care. The IZP represents the various aspects that are important for the individual care of a child in the palliative or palliative terminal phase. In the context of the IZP, a pocketbook has also been developed as a guide to the care plan, in which the guideline has been taken as a guideline and can therefore be regarded as a concise summary.

You can find the revised guideline Palliative care for children here

The guideline is a collaboration of more than 60 working group members in pediatric palliative care, parents and professional associations. The guideline was developed under the guidance of representatives from the Princess Máxima Center for Pediatric Oncology (chair Erna Michiels, coordinator Kim van Teunenbroek, Renée Mulder and Leontien Kremer), UMC Groningen (vice chair Eduard Verhagen), Stichting Kind en Ziekenhuis (Hester Rippen), IKNL (Brigitt Borggreve) and Knowledge Center for Pediatric Palliative Care (Johannes Verheijden).