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

Catherine M Groden; Mona Raed; Paul Helft; Jayme D Allen

doi:10.1038/s41372-024-01930-6

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

J Perinatol. 2024 Mar 14. doi: 10.1038/s41372-024-01930-6. Online ahead of print.

Authors

Catherine M Groden¹, Mona Raed², Paul Helft³, Jayme D Allen⁴

Affiliations

¹ Section of Neonatology, University of Chicago, Chicago, IL, USA. catherinegroden@gmail.com.
² Division of Palliative Care, Community Health Network, Indianapolis, IN, USA.
³ Division of Hematology-Oncology, Indiana University School of Medicine, Indianapolis, IN, USA.
⁴ Division of Neonatal-Perinatal Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.

PMID: 38480788
DOI: 10.1038/s41372-024-01930-6

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.