Green Michael J, Van Scoy Lauren J, Foy Andrew J, Stewart Renee R, Sampath Ramya, Schubart Jane R, Lehman Erik B, Dimmock Anne E F, Bucher Ashley M, Lehmann Lisa S, Harlow Alyssa F, Yang Chengwu, Levi Benjamin H
1 Department of Humanities, Penn State College of Medicine, Hershey, PA, USA.
2 Department of Medicine, Penn State College of Medicine, Hershey, PA, USA.
Am J Hosp Palliat Care. 2018 Jun;35(6):866-874. doi: 10.1177/1049909117744554. Epub 2017 Nov 29.
To evaluate 2 strategies for preparing family members for surrogate decision-making.
A 2 × 2 factorial, randomized controlled trial testing whether: (1) comprehensive online advance care planning (ACP) is superior to basic ACP, and (2) having patients engage in ACP together with family members is superior to ACP done by patients alone.
Tertiary care centers in Hershey, Pennsylvania, and Boston, Massachusetts.
Dyads of patients with advanced, severe illness (mean age 64; 46% female; 72% white) and family members who would be their surrogate decision-makers (mean age 56; 75% female; 75% white).
Basic ACP: state-approved online advance directive plus brochure. Making Your Wishes Known (MYWK): Comprehensive ACP decision aid including education and values clarification.
Pre-post changes in family member self-efficacy (100-point scale) and postintervention concordance between patients and family members using clinical vignettes.
A total 285 dyads enrolled; 267 patients and 267 family members completed measures. Baseline self-efficacy in both MYWK and basic ACP groups was high (90.2 and 90.1, respectively), and increased postintervention to 92.1 for MYWK ( P = .13) and 93.3 for basic ACP ( P = .004), with no between-group difference. Baseline self-efficacy in alone and together groups was also high (90.2 and 90.1, respectively), and increased to 92.6 for alone ( P = .03) and 92.8 for together ( P = .03), with no between-group difference. Overall adjusted concordance was higher in MYWK compared to basic ACP (85.2% vs 79.7%; P = .032), with no between-group difference.
The disconnect between confidence and performance raises questions about how to prepare family members to be surrogate decision-makers.
评估为家庭成员进行替代决策做准备的两种策略。
一项2×2析因随机对照试验，测试以下两点：（1）全面的在线预先护理计划（ACP）是否优于基本的ACP；（2）让患者与家庭成员一起参与ACP是否优于患者单独进行ACP。
宾夕法尼亚州赫尔希和马萨诸塞州波士顿的三级医疗中心。
患有晚期严重疾病的患者（平均年龄64岁；46%为女性；72%为白人）及其将作为替代决策者的家庭成员（平均年龄56岁；75%为女性；75%为白人）组成的二元组。
基本ACP：经州批准的在线预先指示加宣传册。“让你的愿望为人所知”（MYWK）：全面的ACP决策辅助工具，包括教育和价值观澄清。
家庭成员自我效能感的前后变化（100分制），以及干预后使用临床案例 vignettes评估患者与家庭成员之间的一致性。
共招募了285个二元组；267名患者和267名家庭成员完成了测量。MYWK组和基本ACP组的基线自我效能感都很高（分别为90.2和90.1），干预后MYWK组升至92.1（P = 0.13），基本ACP组升至93.3（P = 0.004），两组之间无差异。单独组和共同组的基线自我效能感也很高（分别为90.2和90.1），干预后单独组升至92.6（P = 0.03），共同组升至92.8（P = 0.03），两组之间无差异。与基本ACP相比，MYWK组的总体调整后一致性更高（85.2%对79.7%；P = 0.032），两组之间无差异。
信心与表现之间的脱节引发了关于如何让家庭成员做好替代决策者准备的问题。
