End-of-life care for newborn infants : a multicenter real-life prospective study

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MARIANI, Gonzalo Luis | CONTRERA, Pamela Judith | DE LOS ANGELES VIRASORO, María | PORTELA, Maria Constanza | URQUIZU HANDAL, Maria Ines | AVILA, Aldana Soledad | FERNANDEZ, Ariel Leonardo | FERNANDEZ RIERA, Patricia | CARDIGNI, Gustavo | VAIN, Nestor Eduardo | ARGENTINE NEONATAL END-OF-LIFE STUDY GROUP

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.

http://dx.doi.org/10.1159/000538814

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