Standardised end-of-life care improves neonatal support

Parent holding a newborn’s hand during a moment of comfort and care. © Raydedi Martinez / Unsplash

Care at the end of a newborn’s life can vary between neonatal intensive care units, even when infants have similar needs. Differences in guidance, staff education, and clinical practice may affect how consistently infants and families receive support. This quality improvement study from a level IV neonatal intensive care unit in the United States explored whether introducing standardised approaches could improve the consistency and quality of end-of-life care. The findings show how shared guidance and multidisciplinary work can strengthen care for infants and their families.

Standardised approaches to neonatal end-of-life care can reduce differences in practice and support more consistent care for infants and their families. However, many neonatal intensive care units do not have clear guidance, and staff may feel uncertain when caring for infants with life-limiting conditions. As a result, symptom management and other aspects of care can vary between settings.

The study aimed to assess whether a multidisciplinary quality improvement programme could improve symptom management, staff confidence, and awareness of end-of-life care. The programme introduced clinical guidelines, electronic health record changes, staff education, and practical tools designed to support more consistent care.

Why standardised end-of-life care matters

Introducing clear guidelines, staff education, and practical tools helped make end-of-life care more consistent in the neonatal unit. Following these changes, symptom management improved, and staff reported greater confidence, comfort, preparedness, and awareness when caring for infants at the end of life. The unit also introduced standardised vital sign monitoring and used a visual symbol to alert staff when an infant was receiving end-of-life care, helping teams recognise sensitive situations more consistently. Together, these changes supported a more consistent approach to end-of-life care.

Specialist palliative care consultations remained common throughout the project, although the increase after the intervention was not statistically significant. The researchers also noted greater differences in opinion between clinical teams about care plans and responded by introducing additional team discussions before speaking with families. As the study was conducted in a single neonatal intensive care unit, further research is needed to understand how these approaches may work in other settings.

What this means for affected parents and health professionals

For parents and families, consistent approaches may improve communication and help ensure that care follows clear, shared guidance. For health professionals, the findings highlight how multidisciplinary working, education, and agreed clinical guidance can support more consistent end-of-life care. Parents and families can discuss end-of-life care plans with their healthcare team and ask how care decisions are supported within their unit. Health professionals can use these findings to support ongoing improvements in the quality and consistency of care.

Paper available at: https://doi.org/10.1186/s12904-025-01899-9

Full list of authors: Lofgren, H; Lentin, S; DiMatteo, A; Pasquale, E; Salant, J; Tiwari, P

DOI: 10.1186/s12904-025-01899-9