A systematic review of perinatal palliative care models: challenges and opportunities for the future

TL;DR

This review compares different models of perinatal palliative care in NICUs, highlighting the benefits of early, team-based care and the need for more research.

Contribution

The study identifies three PnPC models and emphasizes the importance of early integration and multidisciplinary teams for better outcomes.

Findings

Three primary PnPC models were identified: consultative, integrative, and team-collaborative.

Early integration of PnPC improves parental satisfaction and reduces aggressive end-of-life interventions.

Multidisciplinary teams are central to effective PnPC delivery across all models.

Abstract

Perinatal palliative care (PnPC) is critical for improving the quality of life of infants with extreme prematurity and life-limiting conditions. However, its implementation differs significantly worldwide. This systematic review will assess and compare PnPC models in neonatal intensive care units (NICUs) to identify best practices, challenges, and areas for improvement. Following PRISMA guidelines, a systematic search of PubMed, Embase, and CINAHL was conducted for studies published in the last decade describing PnPC delivery models. Data on study design, PnPC model characteristics, team composition, timing of involvement, and key outcomes were extracted and synthesized. Fourteen observational studies were included; no interventional trials were identified. The majority of studies originated from the USA (64%). Three primary PnPC delivery models were identified: consultative, integrative, and team-collaborative. Consultative models improved referral rates but were often associated with delays, whereas integrative and collaborative models provided more seamless, continuous care. Across all models, multidisciplinary teams were central to care delivery. Early integration of PnPC, particularly from the antenatal period, was associated with improved outcomes, including higher parental satisfaction, clearer goals of care, and reduced aggressive end-of-life interventions.

Conclusion: Early, integrated PnPC delivered by a multidisciplinary team improves end-of-life care and family support in the NICU. However, significant heterogeneity in practice and a lack of high-level evidence persists. Future research should prioritize rigorous interventional designs, greater geographical diversity, and the use of standardized, family-centered outcome measures to establish evidence-based guidelines for neonatal palliative care.

What is known: • Perinatal Palliative Care is a vital part of neonatology, prioritizing the quality of life for extremely preterm infants and those with life-limiting conditions.
What is New:• The review revealed variability in perinatal palliative care models, timing and team compositions, suggesting early integration can improve support for babies, families and healthcare teams.• Future research should focus on rigorous interventional designs, geographic diversity, and long-term family centered outcomes.• Integrating practical clinical experience with theoretical education strengthens healthcare professionals’ competencies and guidelines development.

What is known:

• Perinatal Palliative Care is a vital part of neonatology, prioritizing the quality of life for extremely preterm infants and those with life-limiting conditions.

What is New:

• The review revealed variability in perinatal palliative care models, timing and team compositions, suggesting early integration can improve support for babies, families and healthcare teams.

• Future research should focus on rigorous interventional designs, geographic diversity, and long-term family centered outcomes.

• Integrating practical clinical experience with theoretical education strengthens healthcare professionals’ competencies and guidelines development.

The online version contains supplementary material available at 10.1007/s00431-025-06459-0.

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