Kwak Jung, Noh Hyunjin
Jung Kwak, PhD, MSW, is associate professor, School of Nursing, The University of Texas at Austin. Hyunjin Noh, PhD, MSW, is assistant professor, School of Social Work, The University of Alabama, Tuscaloosa.
J Hosp Palliat Nurs. 2018 Oct;20(5):478-485. doi: 10.1097/NJH.0000000000000465.
For substituted decision makers for the growing number of persons with dementia (PWDs), understanding the PWD's values is a prerequisite for making end-of-life (EOL) decisions congruent with the PWD's wishes. The current qualitative study explored PWD health care proxies' perspectives on values that are important to PWDs at end of life and challenges in making EOL decisions that reflect PWDs' values. Semistructured interviews were conducted with 20 PWD proxies, and data were analyzed using the content analysis, an inductive approach to identify themes. Three main themes emerged: (1) what matters to PWDs at end of life, (2) uncertainty about the PWD's current wishes and EOL trajectory poses challenges, and (3) the role of health care professionals' empathic and clear communication. Together, these findings suggest proxies' efforts to understand and respect PWDs' wishes at end of life and communication strategies that health care providers can use to help PWD proxies cope with uncertainty and challenges in EOL decision making.
对于越来越多痴呆症患者（PWD）的替代决策者而言，了解PWD的价值观是做出符合其意愿的临终（EOL）决策的前提条件。当前的定性研究探讨了PWD医疗保健代理人对于PWD临终时重要价值观的看法，以及在做出反映PWD价值观的EOL决策时所面临的挑战。对20名PWD代理人进行了半结构化访谈，并使用内容分析法（一种识别主题的归纳方法）对数据进行了分析。出现了三个主要主题：（1）PWD临终时重要的事项；（2）PWD当前意愿和EOL轨迹的不确定性带来了挑战；（3）医疗保健专业人员共情且清晰沟通的作用。这些发现共同表明了代理人在临终时理解和尊重PWD意愿的努力，以及医疗保健提供者可用于帮助PWD代理人应对EOL决策中的不确定性和挑战的沟通策略。
