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

Catherine M Groden¹, Mona Raed², Paul Helft³

¹Section of Neonatology, University of Chicago, Chicago, IL, USA. catherinegroden@gmail.com.

Journal of Perinatology : Official Journal of the California Perinatal Association

|March 14, 2024

Abstract

Objective:

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

Study Design:

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

Results:

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.

Conclusion:

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

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