The revised guideline Palliative care for children has been published. The guideline is in line with bottlenecks from practice that parents, carers and carers have indicated. An interdisciplinary working group with representatives from the Child and Hospital Foundation, the Dutch Pediatric Association, the Knowledge Center for Pediatric Palliative Care and various hospitals, including the Princess Máxima Center, has based this guideline on the latest scientific insights and developed it according to the scientific method. It therefore provides an answer to challenges in practice. IKNL is involved as process facilitator of the palliative care guidelines.
Each year approximately 5,000 to 7,000 children are eligible for palliative care. These are largely children with rare, complex disorders such as brain disposition disorders, metabolic disorders or disorders in children born very prematurely. For about 23% of children, this involves palliative care for oncological conditions. Most children are younger than five years old when the palliative process starts, and the palliative phase often lasts for many years in children.
Care aimed at the whole family’s quality of life
Pediatric palliative care focuses on the quality of life for the child with a life-threatening and life-shortening condition and on the family of which the child is a part.
This means that in the new guidance, in addition to attention to the sick child’s symptoms, there is also attention to support for the family and joint decision-making. Bereavement and loss are also covered in this guide. – says Erna Michiels, chairperson of the guideline working group and pediatric oncologist and palliative specialist at the Princess Máxima Center.
New knowledge and interdisciplinary care around several dimensions of life
There was a need for a revision of the previous guidance from 2013, because there is new knowledge from practice and new scientific insight. In the pursuit of optimal quality of life and death, it is of great importance that the various disciplines work together in the guidance and treatment of children and their relatives. Thereby, it is important not only to pay attention to the physical side, but also, for example, to the child’s social context and psychological state. Seventeen different and related topics regarding palliative care for children are discussed within this guideline.
Main changes and recommendations
- Interdisciplinary work is more central in the revised guidance. The guidelines have been drawn up by members from and on behalf of relevant associations and through the involvement of parents and relatives.
- More attention is paid to all four dimensions in palliative care for children; the physical dimension, the mental or psychological dimension, the social dimension and the meaning dimension.
- In preparing the guidelines, careful, explicit and considered use has been made of the best (scientific) evidence currently available on palliative care for children.
- An extension of subjects is included in the guidance around:
- Delirium (sudden confusion)
- Refractory symptoms (palliative sedation, fluid and nutritional deficiency)
- Psychosocial care
- Care for loss and grief
- Proactive care planning and decision making
- The recommendations regarding organization of care and symptoms have been revised.
The new guideline is on Pallialine. More information about palliative care for children and support resources can be found on the theme page on Palliaweb.
Information for parents/guardians on this topic can be found on Overpalliativ Omsorg’s website. and via the Networks for Integral Child Care (NIK) and Knowledge Center for Palliative Care for Children with associated pages for parents and children, such as: