Mitchell Suzanne E, Weigel Gabriela M, Stewart Sabrina K A, Mako Morgan, Loughnane John F
1 Boston Medical Center, Boston University Medical Center , Boston, Massachusetts.
2 Department of Family Medicine, Boston Medical Center, The University of California , San Francisco School of Medicine, Boston, Massachusetts.
J Palliat Med. 2017 Feb;20(2):127-133. doi: 10.1089/jpm.2016.0168. Epub 2016 Nov 3.
Despite frequent encounters with the healthcare system and high risk for secondary conditions, it is unclear how frequently individuals living with serious physical disabilities document advance directives (AD) or engage in advance care planning (ACP). Their perspectives on these topics are largely unknown.
We aimed to characterize the perspectives of individuals with serious physical disabilities receiving care from two different healthcare delivery settings on the value of AD and ACP.
Key informant interviews were conducted, audiorecorded, transcribed, and analyzed using thematic analysis and constant comparative analysis.
Twenty-five adults with serious physical disabilities were interviewed.
Five organizing themes emerged as follows: (A) AD is a right versus responsibility, (B) past medical experiences influence ACP engagement, (C) ACP requires relationship-centered decision support, (D) concerns for care after death, and (E) suggestions for improving ACP experiences. Participants wished to engage in a relationship-centered approach to ACP, yet voiced hesitation due to experiences of significant medical bias and mistreatment, typically surrounding judgments of their quality of life.
Better health professional training in ACP and heightened awareness of the unique ACP considerations pertaining to people with disabilities are recommended.
尽管经常接触医疗保健系统且患继发性疾病的风险很高，但尚不清楚严重身体残疾者记录生前预嘱（AD）或参与生前预嘱规划（ACP）的频率如何。他们对这些话题的看法大多不为人知。
我们旨在描述在两种不同医疗服务环境中接受护理的严重身体残疾者对AD和ACP价值的看法。
进行关键信息人访谈，进行录音、转录，并使用主题分析和持续比较分析进行分析。
对25名严重身体残疾的成年人进行了访谈。
出现了五个组织主题，如下所示：（A）AD是一种权利与责任，（B）过去的医疗经历影响ACP参与度，（C）ACP需要以关系为中心的决策支持，（D）对死后护理的担忧，以及（E）改善ACP体验的建议。参与者希望采用以关系为中心的方法进行ACP，但由于重大医疗偏见和虐待的经历，尤其是围绕对他们生活质量的判断，他们表示犹豫不决。
建议对医疗保健专业人员进行更好的ACP培训，并提高对与残疾人相关的独特ACP考虑因素的认识。
