End of life care in a level IV outborn neonatal intensive care unit

Describe care surrounding the end of life (EOL) in the neonatal intensive care unit (NICU).

Retrospective chart review of 208 infants who died in a level IV referral-only NICU over 5 years.

A goals of care (GOC) conversation was documented before the day of death for 63% of infants. 73% died following withdrawal of life-sustaining treatment (WD); 13% died in a code. The median age at death was 17.5 days. 72% were held by a parent at EOL. 94% of families desired formal memory-making. We identified associations with mode of death and parental holding at death, including: WD was associated with palliative care consultation, early GOC conversations, and increased unit-specific length of stay. Holding was associated with chaplain visits, memory-making, and increased home-to-hospital distance.

We present a detailed description of EOL care in an outborn NICU, including novel data on parental holding and memory-making.