Trigger warning! This research news deals with the palliative care and death of terminally ill infants.

In neonatal intensive care units (NICUs), life-saving efforts are central, but not all infants can survive. This presents emotional and ethical challenges for families and healthcare professionals alike. Neonatal palliative care (NPC) has emerged as a compassionate approach to support newborns with life-limiting conditions and their families. A new systematic review analyzed how NPC impacts on the quality of care of sick neonates, and the experiences of affected families and the medical professionals who care for them. The findings show that NPC significantly improves the quality of care, communication with parents, and emotional well-being for both parents and nurses before and after the death of the newborn.

While medical advances have increased survival rates in NICUs, there are still situations where curative treatment is not possible. In these moments, care shifts toward supporting the infant and their family in meaningful ways through NPC. NPC is a comprehensive approach that focuses on the physical, mental, social, and spiritual well-being of newborns with serious or life-limiting conditions. Core principles of NPC include compassion, dignity, and close collaboration with families. The goal is to reduce unnecessary suffering and provide holistic support that includes emotional, psychological, and spiritual dimensions.

To better understand the effects of this under-researched area, a systematic review brought together evidence from 12 studies, following the palliative care journey of over 1,100 infants. These studies examined how NPC influences the experiences of neonates, their families, and nurses. The included studies originate from several countries, mainly the US and Australia.

Reducing Neonatal Pain While Supporting Parents’ Well-Being

The implementation of NPC programs had a significant impact on the infant’s final medical care. The use of analgesics—such as opioids, benzodiazepines, and sedatives—increased, helping to better control pain and manage symptoms. In addition, invasive procedures, such as laboratory tests, needling, and surgery were reduced. This led to greater comfort for the infant. Moreover, more parents and healthcare professionals jointly made the difficult decision to withdraw life support, aiming to reduce the infant’s suffering.

For parents, NPC enhanced involvement in their child’s care and improved communication with the care team, which subsequently contributed to a higher quality of care and greater parental satisfaction. The program also reduced stress and maternal anxiety and improved crucial emotional support before the infant’s death as well as during the grieving process. Beyond parental support, NPC also extended the support to siblings of the newborn.

For nurses, the adoption of NPC practices led to a more holistic care approach and improved interprofessional collaboration. Healthcare professionals reported higher competence not only in medical care for the neonate but also in offering psychological and spiritual assistance to parents.

Putting the Family at the Core of NPC

The results emphasize the need for a holistic, family-centered approach in the palliative care of infants. With a focus on parent involvement in care procedures, the infant benefits from improved quality of care, while parental stress may decrease. Ensuring the availability of NPC can therefore make a meaningful difference for families facing one of life’s most difficult journeys. Introducing NPC in more NICUs could shift the focus from solely medical outcomes to embracing emotional and human experiences as well.

Paper available at: Impact of neonatal palliative care on neonates, their parents, and nurses: a systematic review - Arman Mohammadi, Mostafa Gholami, Mohammadamin Jandaghian-Bidgoli, Fatemeh Abdi, 2025

Ful list of authors: Mohammadi, A.; Gholami, M.; Jandaghian-Bidgoli, M.; Abdi, F.

DOI: https://doi.org/10.1177/26323524251326103