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: This was a prospective, multicenter, cross-sectional study. Neonates who died in the delivery room or in the neonatal intensive care unit 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 neonatal intensive care unit (28%) than in the delivery room (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 withholding 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. Plain Language Summary: The death of a newborn seems a contradiction, an error of nature. However, neonatal death is a reality and a problem that concerns different disciplines such as public health and bioethics. While the causes are obviously important to develop strategies to decrease them, the way neonates die is essential, including the shared decisions about specific therapies and the care provided at the end of life. To avoid therapies without beneficial effects, neonatal deaths in more industrialized countries follow a process of redirection of care, that is, addressing comfort and avoiding pain instead of looking for a cure that is not possible. 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. Over a 6-month period, health professionals who were involved in the terminal care of neonates were interviewed within 7 days of the death, and data of the end-of-life process were recorded. We gathered information on 697 neonatal deaths, which represent 80% of the total deaths occurring in Argentina in that period. Overall, 32% of neonates died after a process of redirection of care, most of them because of an inevitable death and a lower percentage because of severe compromise of expected quality of life. In conclusion, in contrast to more industrialized countries, most neonates who die in Argentina do so while receiving full support and when care is redirected, this decision mainly follows a condition of inevitable death. [ABSTRACT FROM AUTHOR]