College of Nursing, Penn State University, University Park, Pennsylvania, USA.
College of Medicine, Penn State University, Hershey, Pennsylvania, USA.
J Palliat Med. 2021 Jul;24(7):982-993. doi: 10.1089/jpm.2020.0238. Epub 2020 Dec 29.
Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role. To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP. Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012-2017). Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses. Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: , , or . Themes and categories were compared across arms. About 72.72% of spokespersons (144/198) reported being and 27.28% (54/198) reported being or with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions. Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions. NCT02429479.
预先医疗照护计划(ACP)旨在帮助患者及其代理人准备临终决策,但对于影响代理人对该角色准备程度的因素知之甚少。为了探讨代理人在参与 ACP 后对代理决策的准备情况。采用混合方法实验设计,对在一项随机对照试验(2012-2017 年)期间收集的访谈进行定性主题分析和数据转换(从丰富的定性数据中创建分类数据)。两个三级护理医疗中心(宾夕法尼亚州赫希和马萨诸塞州波士顿)。在试验中纳入的 285 对(患有晚期疾病的患者及其代理人)中,有 200 名代理人访谈被有目的地抽样,198 名代理人访谈纳入分析。对代理人进行访谈(干预后四周),探讨代理人对代理决策的准备情况、ACP 对话的发生情况以及代理人对未来代理决策的意图。使用数据转换将参与者的回答分为三类:、或。对主题和类别进行了比较。大约 72.72%的代理人(144/198)报告为或,27.28%(54/198)报告为或,研究臂之间的准备情况没有差异。干预后 ACP 对话的发生并没有影响代理人的准备情况;然而,使用 ACP 决策辅助工具的代理人报告了更多的对话。出现了四个主题来解释代理人的准备情况:(1)对 ACP 的看法;(2)对不确定性的舒适度;(3)关系问题;和(4)个人特征。关于未来的意图,出现的情况是,代理人认为他们对患者意愿的了解,以及其他个人、关系、情况和情绪因素,将影响他们的代理决策。影响代理人对代理决策准备程度的因素超出了特定 ACP 干预措施的范围。了解这些因素对于理解如何提高患者临终愿望与代理人决策之间的一致性非常重要。NCT02429479。