How to approach advance care planning for children with complex neurodisability.

Abstract

Advance Care Planning is widely regarded as good practice in palliative care. It can however be challenging to approach and navigate for children with complex neurodisability where they may not be a clear diagnosis, the illness trajectory and prognosis may be uncertain, and the young person may not be able to communicate their wishes. Advance care plans will change and develop over time and differing opinions can all be heard and incorporated. There is guidance and paperwork to support professionals to help families consider the future and develop helpful plans. This short article summarises some of the guidance available to paediatricians and other health professionals within the UK and provides a personal account of how this can significantly contribute to care for CYP with complex neurodisability.