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

Authors

Maria Beatriz Mariano-Menezes, Paulo Reis-Pina

Published in

Palliative medicine. Pages 2692163261478449. Aug 26, 2026. Epub Aug 26, 2026.

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.

PMID:
42655896
Bibliographic data and abstract were imported from PubMed on 27 Aug 2026.

Read full publication at:
Please sign in to see all details.

Stats

1-terrible, 9-excellent. How would you rate this publication? Sign in in to submit your rating.

Post a comment

You need to be signed in to post comments. You can sign in here.

Comments

There are no comments yet.