Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

Abstract

BackgroundCompleting 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.ObjectivesTo 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.MethodsThis 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 (n = 14), two with Jewish immigrants from the Former Soviet Union (n = 14), and two with Arabs (n = 14). The analysis followed recommended steps for thematic content analysis.ResultsFour 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.ConclusionsThere 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.

Cross-cultural perspectives on intelligent assistive technology in dementia care: comparing Israeli and German experts’ attitudes

“…In addition, studies show that individualistic societies give importance to “personal privacy,” whereas people from collectivistic societies place greater importance on “family privacy” and family-centered living [ 54 ]. Nevertheless, the Israeli experts did suggest using advance care directives – a form of preserving and respecting the autonomy and preferences of people with dementia [ 55 ] – as a way of addressing privacy dilemmas. In the context of the researched topic, it is essential that advance care directives also include the issue of using or not using IAT in the care of older people and the consequences of its use, including the potential invasion of privacy.…”

Chinese Diaspora Communities’ Knowledge of and Engagement with Advance Care Planning: A Systematic Integrative Review

“…This is also echoed in other diasporas globally. 16 The Chinese tradition of reciprocal filial piety, in which adult children are expected to look after elders was found to be an influence on engagement with advance care planning. 57 , 59 , 60 However the evidence of the influence of this is unclear.…”

“…7,10,11 The Chinese community represents the biggest and fastestgrowing ethnic community around the globe, 12 yet engagement with advance care planning remains low, 13 similar to that of other ethnic minorities. [14][15][16] Some authors attribute this to differing cultural, sociodemographic, and health-related factors. 13,17 Lee et al 17 in their review, emphasized the appropriateness and importance of collectivism and familism as major decisionmaking influences among Chinese people from Eastern and Western cultures rather than individual autonomy and self-determination.…”