Pediatric Palliative Care, University of Nebraska Medical Center, Omaha, Nebraska.
National Center for Ethics in Healthcare, Washington, District of Columbia.
Pediatrics. 2023 Mar 1;151(3). doi: 10.1542/peds.2022-058999.
National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS.
Cross-sectional online survey was shared with an ethics informant at 181 children's hospitals in the United States from March to June 2022. Data were summarized descriptively and with semantic content analyses.
One hundred seventeen surveys were received from individual children's hospitals in 45 states and Washington DC (response rate 65%), with 104 qualifying for survey completion. Almost one-quarter of settings received 50 or more pediatric ethics consults in the past 12 months. On average, 7.4 people at each institution have responsibility for completing ethics consults. Estimated full-time equivalent salary support for ethics is on average 0.5 (range 0-3, median 0.25). One-third (33%) of facilities do not offer any salary support for ethics and three-quarters do not have an institutional budget for the ethics program. Clinical staff primarily initiate consults. End-of-life, benefits versus burdens of treatments, and staff moral distress were the most frequently consulted themes. Almost one-quarter (21%) of children's hospitals do not receive any consults from patients or families.
The findings from this study reveal wide variation in PECS practices and raise concern about the lack of financial support provided for PECS despite substantial workloads.
国家标准和指南呼吁建立一种机制,以解决儿童医院的伦理问题和冲突。儿科伦理咨询服务(PECS)的角色、责任和范围仍未得到衡量。本研究的目的是量化 PECS 的人员配备、结构、功能、范围、培训和资金。
2022 年 3 月至 6 月,我们向美国 181 家儿童医院的伦理知情人共享了一份横断面在线调查。数据采用描述性和语义内容分析进行总结。
来自 45 个州和华盛顿特区的 181 家儿童医院的 117 份调查回复,其中 104 份符合调查完成条件。近四分之一的机构在过去 12 个月内收到了 50 次或更多的儿科伦理咨询。平均而言,每家机构有 7.4 人负责完成伦理咨询。估计伦理方面的全职等价薪酬支持平均为 0.5(范围 0-3,中位数 0.25)。三分之一(33%)的机构不为伦理提供任何薪酬支持,四分之三的机构没有伦理项目的机构预算。临床人员主要发起咨询。临终关怀、治疗的益处与负担以及员工道德困境是最常咨询的主题。近四分之一(21%)的儿童医院没有收到患者或家属的任何咨询。
本研究的结果表明 PECS 的实践存在广泛差异,并令人担忧的是,尽管工作量很大,但 PECS 缺乏资金支持。