This new palliative care framework has been developed as a joint venture in conjunction with the Association of Paediatric Palliative Medicine (APPM). In this version, we move away from a list of specific conditions, and instead propose a model that recognises the inherent uncertainty present in the care journey for so many babies and their families.
The document outlines an integrated framework of perinatal palliative care which is appropriate for all cases where there exists uncertainty about a baby’s outcome. This model emphasises that palliative care is not synonymous with end-of-life care but rather represents an active and total approach to care which can be delivered from the point of diagnosis and alongside treatments directed at cure. It also highlights how palliative care is very much ‘everyone’s business’ and can be delivered by existing perinatal teams with support from community and specialist services where required.
The framework is intended as supportive guidance for all healthcare professionals working in perinatal medicine across antenatal and neonatal services and should inform the development of integrated palliative care pathways at a local level. It is not a detailed guideline for how to practice palliative care (for example how to manage symptoms or develop advance care plans) and does not replace specialist expertise.