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.

引言
工业化国家的绝大多数新生儿死亡均伴随医疗照护转向（redirection of care）流程。本研究旨在描述中等收入国家新生儿的死亡特征、是否存在医疗照护转向情况，以及做出该决策的原因。

方法
本研究为前瞻性多中心横断面研究。纳入6个月内于97家医院的产房（DR）或新生儿重症监护室（NICU）内死亡的新生儿。每例新生儿死亡事件发生后，由1名研究者对参与该临终照护（end-of-life care）流程的医疗团队成员进行访谈。研究人员记录了围产期数据、致死性基础疾病、是否存在医疗照护转向情况，以及临终照护流程的细节信息。

结果
本研究共分析697例新生儿死亡病例，占同期阿根廷全国新生儿死亡总数的80%。主要死亡原因为早产并发症（47%）与先天性畸形（27%）。总体而言，32%的新生儿在接受医疗照护转向流程后死亡，该情况在NICU内的发生率低于产房（70%，p<0.001）。限制/撤除医疗照护的原因包括死亡不可避免（75%）与预期生存质量严重受损（25%）。医疗照护转向操作包括66%的限制治疗与34%的撤除治疗。诊断为重大先天性畸形会提升医疗照护转向的发生风险（比值比（odds ratio, OR）5.45；95%置信区间（95%CI）3.59~8.27）。

结论
阿根廷绝大多数死亡新生儿在离世前仍接受全面的生命支持治疗。医疗照护转向决策主要基于死亡不可避免这一情形。