End-of-life circumstances and unanticipated deaths in a neonatal intensive care unit: a retrospective analysis

TL;DR

This study examines how and under what circumstances infants die in a neonatal intensive care unit, highlighting the importance of anticipatory care and family involvement.

Contribution

The study provides new insights into the circumstances surrounding unanticipated deaths in NICUs and emphasizes the need for improved anticipatory and family-centered care.

Findings

Most deaths in the NICU occurred after withholding or withdrawing life-sustaining therapies, often due to poor neurological prognosis or perceived futility.

Unanticipated deaths were associated with rapid clinical deterioration, multi-organ failure, and reduced parental presence during end-of-life care.

Abstract

Despite major advances in neonatal intensive care, mortality in neonatal intensive care units (NICUs) remains a persistent reality. Most deaths now occur after withholding or withdrawing life-sustaining therapies (WWLST), yet some remain sudden or unanticipated. Understanding how and under which circumstances infants die is essential to improving anticipatory communication, ethical consistency, and family-centered support in neonatal end-of-life (EOL) care.

We conducted a retrospective study including all infants who died in the tertiary NICU of Montpellier University Hospital, France, between May 2022 and May 2025. Demographic, perinatal, clinical, and end-of-life data were extracted from medical records. Deaths were classified as anticipated (following WWLST) or unanticipated (without WWLST). Statistical comparisons explored factors associated with unanticipated deaths.

Among 870 NICU admissions, 105 infants (12%) died. Mortality was concentrated in three groups: very premature infants (< 29 weeks’ gestation, 55%), infants with severe congenital or early-onset conditions (26%), and those with hypoxic-ischemic encephalopathy (19%).

Seventy-six infants (72%) died after a WWLST decision—most often for poor neurological prognosis or perceived futility of care—whereas 23 (22%) died without a prior WWLST decision. Unanticipated deaths were mainly associated with multi-organ failure (≥ 3 organs 65% vs 40%; p=0.02), predominantly cardiovascular or respiratory failure, shorter illness trajectories (1 vs 6.5 days from complication to death; p<0.01), and reduced parental presence during EOL care (52% vs 80%; p<0.01), including fewer opportunities for parents to be present and to hold their infant at the time of death.

In this tertiary NICU, most deaths were anticipated and occurred following structured WWLST processes. Unanticipated deaths primarily reflected rapid clinical deterioration and were associated with more abrupt and less family-centered end-of-life circumstances. These findings underscore the importance of early recognition of dying trajectories and timely multidisciplinary discussions to support anticipatory, compassionate, and parent-centered end-of-life care in the NICU. Strengthening education in neonatal ethics and palliative care may foster more consistent, compassionate, and anticipatory EOL practices.

The online version contains supplementary material available at 10.1186/s12904-026-02014-2.

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