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Prinses Máxima Centrum

Revised guideline Palliative care for children

On November 28, the revised version of the guideline Palliative Care for Children was published. Pediatric palliative care focuses on the quality of life of the child with a life-threatening and life-shortening illness (including children with cancer) and on the child’s family. Each year, more than 5,000 children and families need pediatric palliative care.
'The new guideline focuses not only on the symptoms of the sick child, but also on family support and shared decision-making. Grief and loss are also addressed in this guideline,' said Erna Michiels, chair of the guideline working group, pediatric oncologist and palliative care specialist at the Princess Máxima Center.

The revised guideline contains more than 100 recommendations on various aspects of pediatric palliative care, including medical, psychological, social and spiritual support, communication, organization of care. This makes it one of the most complete sources of knowledge on pediatric palliative care in the Netherlands.

The main changes are:
  • The guideline has been compiled by professionals from different disciplines as well as parents and loved ones.
  • There is more focus on different domains within palliative care, such as psychological, social and spiritual support.
  • The guideline is evidence-based.
  • Recommendations on treatment of symptoms and organization of care have been revised.
  • Recommendations on the following topics have been added: palliative sedation, fluid and nutritional deprivation, psychosocial care, care in loss and grief, proactive planning of care and shared decision making.
Development of revised guideline

The revised guideline was developed by more than 60 working group members from 20 different disciplines from various hospitals, other healthcare institutions and professional associations, in collaboration with parents and parents' associations.

Representatives from the Prinses Máxima Center (chair Erna Michiels, coordinator Kim van Teunenbroek, Renée Mulder, Leontien Kremer), UMC Groningen (vice chair Eduard Verhagen), Stichting Kind en Ziekenhuis (Hester Rippen), Kenniscentrum Kinderpalliatieve zorg (Johannes Verheijden) and IKNL (Brigitt Borggreve) formed the core group.

The guideline is based on the latest scientific insights and developed according to scientific methodology. IKNL is involved as process supervisor of the palliative care guidelines.

The new guideline is on Pallialine. More information on pediatric palliative care and support resources can be found on the topic page on Palliaweb.
Information for parents on this topic can be found on the Overpalliative Care website, and through Networks of Integrated Child Care (NIK) and Knowledge Center for Pediatric Palliative Care.