Today is a special day. The revised guideline Palliative care for children has been published. The guideline provides professionals, parents and caregivers with tools and a reference work to improve the care for children with a life-shortening or life-threatening illness and their families.

The first palliative care guideline for children was published in 2013. Evidence based and for the ^1st , ^2nd and ^3rd line. In the years before, there were clear signs that there was a need for knowledge. Experience with palliative care for children was already being gained in all kinds of places, but this knowledge and experience was not easily shared, so that everyone had to reinvent the wheel. This came to an end with the 2013 directive.

The guideline bundles all knowledge on the topics of symptoms, decision-making and organization of care. Within these chapters there are all kinds of subchapters that show what is important to do and what is important not to do. The guideline provides guidance and forms, as it were, a new practice of evidence-based palliative care for children.

Input from parents

A lot has changed since 2013. New developments in the Netherlands and worldwide are given a place in the new guideline. The revision was created through close collaboration between healthcare professionals, researchers and parents. These parents 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.

Modernize and add chapters

The biggest change is that chapters have been added and some pieces have been modernized. An important addition is the chapter 'refractory symptoms', which includes palliative sedation and abstinence from fluids and nutrition. Refractory symptoms are physical or psychological symptoms for which treatment is not effective (sufficiently quickly) or is accompanied by unacceptable side effects. Think of dyspnea (shortness of breath, tightness of the chest), pain or delirium/restlessness. Partly as a result of a study among children aged 1-12 who receive palliative care, these two components have been greatly expanded and thus form an important stepping stone for careful action to take place.

In addition, a chapter on Advance Care Planning (ACP) and shared decision making, psychosocial care and aftercare and grief was added. Psychosocial care, attention for the entire family and aftercare is much more often used as regular care.

Doctors, nurses and parents indicated that the above topics needed elaboration. The new directive responds to that question. In addition, constant consideration has been given to the wish that the guideline should be easily accessible to other professional groups than doctors. And for parents and children themselves.

“The great strength of this guideline is that healthcare professionals and parents felt the need to pool knowledge so that it could also be used in practice. In addition, both the content and the creation are unique from an international perspective. In addition, it is really special that this guideline is linked to the project of the Individual Care Plan, where the translation is made of the generic knowledge from the guideline into a form that can be used by the patient. There is little point in drawing up a guideline if we have not also considered how it can be put into practice and how we can ensure that it works. A lot of thought has gone into this guideline.”

- Eduard Verhagen, pediatrician and professor of pediatric palliative care at the UMC Groningen

More information

You can find the new guideline 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 leadership 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).