Publication
Before birth and beyond: Advance care planning in perinatal and neonatal palliative care - A scoping review
Mariano-Menezes M, Reis-Pina P · Palliative Medicine · 2026
Background: Advance care planning is a core component of Palliative Care, yet how it is organized and used in practice remains variably described. Aim: 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. Design: Scoping review registered on the Open Science Framework (https://osf.io/c3mkx/overview; May 2, 2025). Data sources: 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. Results: 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. Conclusions: 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.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.