A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and shared decision-making

Background: In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands. Methods: A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences. Results: We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment. Conclusion: The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries.