Before birth and beyond: Advance care planning in perinatal and neonatal palliative care - A scoping review.

Abstract

Advance care planning is a core component of Palliative Care, yet how it is organized and used in practice remains variably described. To map how advance care planning is put into practice within Perinatal/Neonatal Palliative Care and identify contextual enablers and barriers across settings and stakeholder groups. Scoping review registered on the Open Science Framework (https://osf.io/c3mkx/overview; May 2, 2025). MEDLINE, Web of Science, and Scopus (2014-2024). Participants included parents/legal guardians, healthcare professionals, and infant/dyad record-based data eligible for Perinatal/Neonatal Palliative Care; Concept covered delivery, content, timing, documentation, and barriers/enablers; Context was perinatal/neonatal settings in any country. PRISMA-Scoping Review guidelines were followed; Joanna Briggs Institute critical appraisal tools were used. Data were synthesized narratively. Ten studies were included, mostly from Europe. Advance care planning was consistently associated-descriptively-with clearer communication and more structured end-of-life decision-making, with sustained emphasis on infant comfort/symptom management. Where birth/comfort plans were standardized and accessible, documentation/implementation improved; a before-after analysis also reported gains in multidisciplinary communication, documentation of parents' views, clarity of end-of-life status, and use of comfort-oriented regimens. Parents/families highlighted validation, preparedness, agency, and memory-making. Professional/service-level factors underscored training, templates, early referral, and parallel planning. Concordance and validated parent-reported measures were rarely quantified. Within Perinatal/Neonatal Palliative Care, advance care planning organizes communication/decisions while supporting infant comfort with standardized, shared plans. Practice should prioritize structured conversations, embedded documentation, early referral, and training; research should prospectively evaluate standardized pathways, measure parent-centered outcomes and concordance, and strengthen neonatal pharmacology.