Towards optimised paediatric palliative care: A clinical practice guideline

Abstract

Too often children with life-threatening and life-limiting conditions and their families fail to receive adequate and consistent paediatric palliative care that meets their physical, psychological, social, and spiritual needs. The aim of this dissertation was to further improve the quality of paediatric palliative care and thereby the quality of life of children aged 0 to 18 years with life-threatening and life-limiting conditions and their families by developing the revised Dutch clinical practice guideline for paediatric palliative care.

Health care providers expressed a need for more guidance on essential elements of paediatric palliative care based on the most recent evidence from scientific literature. This led to the revision of the first Dutch Paediatric palliative care guideline in 2013. The revised clinical practice guideline for paediatric palliative care was developed according to a standardized methodology that ensured trustworthiness. By using this methodology, we provided a large set of recommendations for essential components of paediatric palliative care including symptom treatment, advance care planning, shared decision-making, and psychosocial care including preloss and bereavement care. The recommendations were based upon evidence from scientific literature, clinical expertise and patient and family values.

The insights and the findings of this dissertation open opportunities to further optimise the guideline and paediatric palliative care research. We elaborated on several opportunities such as the use of automated tools to improve the efficacy and quality in guideline development, broaden scope of the guideline for paediatric palliative care in the future, address identified knowledge gaps in paediatric palliative care, and facilitate further implementation of the guideline. These opportunities can facilitate the further optimisation of paediatric palliative care in the Netherlands but can also be used to improve paediatric palliative care worldwide.