Supplementary Material for: End-of-life care for newborn infants. A multicenter real life prospective study

Introduction Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason for this decision. Methods Prospective, multicenter, cross-sectional study. Neonates who died in the delivery room (DR) or in the neonatal intensive care unit (NICU) in 97 Hospitals over a 6-month period were included. After each neonatal death, one investigator interviewed a member of the healthcare team who had been involved in the end-of-life care process. Perinatal data, conditions that led to death, whether there was redirection of care, and details of the end-of-life process were recorded. Results Data from 697 neonatal deaths were analyzed, which represent 80% of the total deaths occurring in Argentina in that period. The main causes of death were complications of prematurity (47%) and congenital anomalies (27%). Overall, 32% of neonates died after a process of redirection of care, and this was less frequent in the NICU (28%) than in the DR (70%, p < 0.001). The reasons for withholding/ withdrawing care were inevitable death (75%) and severe compromise of expected quality of life (25%). Redirection of care consisted in withhold therapies in 66%, and withdrawal in 34%. A diagnosis of a major congenital anomaly increased the odds of redirection of care (OR 5.45; 95%CI 3.59-8.27). Conclusion Most neonates who die in Argentina do so while receiving full support. Redirection of care mainly follows a condition of inevitable death.