372 - Bereavement Care Practices at a Level IV NICU

Poster Number: 372
Publication Number: 372.133

Catherine M. Groden, Indiana University School of Medicine, Indianapolis, IN, United States; Jayme D. Allen, Indiana University School of Medicine, Pittsboro, IN, United States

Background: Despite advances in care, approximately 20,000 infants per year die nationwide, including approximately 35-45 per year in our high-risk level IV neonatal intensive care unit (NICU). The bereaved parents of these infants are at risk for adverse physical and mental health consequences and require multifaceted support. The literature on end-of-life and bereavement care practices in NICUs is limited.

Objective: To describe the characteristics of infants who died in a level IV NICU, their care at end of life, and bereavement care used by their parents.

Design/Methods: We performed a retrospective chart review of all infants who died in our level IV NICU or were discharged from the NICU on hospice care from 2018-2021 (2021 year-end data pending). Infants who died in other hospital units, or after non-hospice discharge from the NICU, were excluded. Infants’ clinical characteristics, family characteristics, and end-of-life care data were collected.

Results: 158 infants were included in the data set. Detailed characteristics are given in the tables. Their median gestational age at birth was 32.1 weeks (IQR, 25.4-36.9). 24.7% were born full term, 39.9% at 28+0 - 36+6 weeks, and 35.4% before 28 weeks of gestation. Median birthweight was 1495 g (IQR, 740-2540). 27.2% were born over 2500 g, 22.8% between 1500 and 2500 g, 13.3% between 1000 and 1500 g, and 36.7% under 1000 g. Overall, the group was 51% male and 58% white. Major medical problems contributing to death included HIE (18%), anatomic anomalies (41%), genetic anomalies (23%), and necrotizing enterocolitis (28%). 47% had palliative care involvement. 95% of infants were held by a parent at some point during their course. 78% died following redirection of care, whereas 13% died following a code event. Biological fathers were involved with most infants (89%).Conclusion(s): Baseline characteristics and clinical courses varied among infants who died in this level IV NICU. Most infants (78%) died following redirection of care. The vast majority (95%) were held by their parents. Unit practice is to offer formal keepsakes including handprints, footprints, heartbeat recordings, bracelets, hand molds, and bereavement photography; nearly all families (97%) requested such items. Our study outlines the unique environment of bereavement care in the NICU. Future directions for this research include analysis of characteristics correlating to utilization of outpatient hospital-based bereavement services; we hope to identify any populations that are not adequately served by existing bereavement care.
Table 1Infant characteristics and clinical data
Table 2Maternal characteristics