Sullivan Jane Elizabeth, Gillam Lynn Heather, Monagle Paul Terence
The Children's Bioethics Centre, The Royal Children's Hospital, Parkville, Australia.
The Centre for Health Equity, The University of Melbourne, Melbourne, Australia.
Palliat Support Care. 2019 Apr;17(2):165-171. doi: 10.1017/S1478951517001110. Epub 2018 Jan 11.
Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents' experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process.
A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed.
Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child's condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people's actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention.
A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician's support for parents as they care for their child.
典型的儿科临终决策研究考察了决策过程、影响因素以及医生和父母的角色。较少有人关注临终决策做出后会发生什么，即决策的实施及其结果。本研究探讨了失去孩子的父母在孩子临终决策方面的观点和经历。报告的研究结果涉及父母执行其决策的经历。有人认为这是决策过程中的一个重要阶段。
采用定性研究方法。对失去孩子的父母进行了半结构化访谈，这些父母曾讨论过其患有危及生命疾病且已去世孩子的临终决策。对数据进行了主题分析。
25位失去孩子的父母参与了研究。研究结果表明，尽管情况存在差异，包括孩子的病情和年龄，但临终决策并非在做出决定时就结束了。执行决策是该过程的下一个阶段。各阶段之间的时间间隔和执行途径各不相同，但执行过程始终可被视为一个单独的阶段。决策的执行涉及做出进一步的决定——父母需要确定实施放弃或停止维持生命的医疗治疗这一决策的合适时机。意外事件，包括他人的行为，影响了父母按计划执行决策。当孩子在没有医疗干预的情况下从严重健康问题中康复时，几位父母不得不重新执行决策。
一个新颖且关键的发现是，父母将临终决策体验为一系列相互关联的阶段，最后一个阶段是决策的执行。执行阶段涉及进一步的决策。临终决策应被更好地理解为一个过程，而非一个离散的一次性事件。执行阶段对父母有着特殊的情感和实际影响。对这一阶段有更深入的理解可以改善临床医生在父母照顾孩子过程中对他们的支持。
