Werner Perla, Ulitsa Natalie, AboJabel Hanan
Department of Community Mental Health, University of Haifa, Haifa, Israel.
Front Psychiatry. 2022 Mar 14;13:864271. doi: 10.3389/fpsyt.2022.864271. eCollection 2022.
Completing advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for end-of-life care of people living with dementia. However, research deciphering the reasoning behind the decision to complete or not advance directives in the case of dementia remains limited, especially among people pertaining to different majority/minority groups.
To explore the motivations of people without dementia in Israel to complete or not to complete advance directives and to compare these motivations among the majority veteran Jewish group, the minority Jewish Former Soviet Union immigrant group, and the minority Arab group.
This qualitative study used purposive sampling and focus groups with discussions elicited by a vignette. A total of 42 Israeli people without dementia participated in 6 focus groups: two with veteran Jews ( = 14), two with Jewish immigrants from the Former Soviet Union ( = 14), and two with Arabs ( = 14). The analysis followed recommended steps for thematic content analysis.
Four overarching themes were identified: (1) the meaning of dementia-related advance directives, (2) motivations for willingness to complete advance directives, (3) motivations for not being willing to complete advance directives, and (4) ethical dilemmas. Some of the themes were common to all groups, while others were informed by the groups' unique characteristics. Participants displayed a lack of knowledge and misunderstanding about advance directives, and central concepts such as autonomy and competence. Furthermore, stigmatic images of dementia and of the person with the diagnosis were associated to participants' motivations to complete advance directives.
There is need to expand comparative research among culturally and socially similar and dissimilar groups within a country as well as between countries in order to better guide public health efforts to increase the rates of advance directives completion. Special attention should be paid to decreasing stigmatic beliefs and understanding unique cultural values and motivations.
制定预立医疗指示已被视为维护和尊重痴呆症患者临终护理自主权及偏好的一项重要手段。然而，解读痴呆症患者决定是否制定预立医疗指示背后原因的研究仍然有限，尤其是在不同多数/少数群体中。
探讨以色列非痴呆症患者制定或不制定预立医疗指示的动机，并比较多数退伍犹太人群体、少数前苏联犹太移民群体和少数阿拉伯群体之间的这些动机。
本定性研究采用立意抽样和焦点小组方法，通过一个案例引发讨论。共有42名以色列非痴呆症患者参加了6个焦点小组：两个小组由退伍犹太人组成（n = 14），两个小组由前苏联犹太移民组成（n = 14），两个小组由阿拉伯人组成（n = 14）。分析遵循主题内容分析的推荐步骤。
确定了四个总体主题：（1）与痴呆症相关的预立医疗指示的意义；（2）愿意制定预立医疗指示的动机；（3）不愿意制定预立医疗指示的动机；（4）伦理困境。其中一些主题在所有群体中都很常见，而其他主题则受各群体独特特征的影响。参与者对预立医疗指示以及诸如自主权和行为能力等核心概念缺乏了解和存在误解。此外，痴呆症及痴呆症患者的污名化形象与参与者制定预立医疗指示的动机有关。
有必要在一个国家内以及不同国家之间，对文化和社会相似及不同的群体开展更多比较研究，以便更好地指导公共卫生工作，提高预立医疗指示的制定率。应特别关注减少污名化观念，并了解独特的文化价值观和动机。
