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.
Highlights
The conceptualization of dementia has continuously evolved over time
Implementing advance care planning and completing advance directives are fundamental to attain the goals of this new dementia framework
Advance care planning and advance directives are conceptualized as a health behavior [3], and their benefits are demonstrated at the individual, family, physician, and social levels [4–9]
Summary
The conceptualization of dementia has continuously evolved over time. From the use of a predominantly biomedical model, stressing the pathological aspects of the condition and seeing the pursuit of a cure as the first priority, the understanding of dementia is guided today by a relational model based on an enablement and equality approach, stressing the principles of self-determination, autonomy, human rights, and involvement in decision-making [1]. Advance care planning is the process of discussing and communicating to family members and physicians personal predilections regarding end-of-life medical care, in the event that the individuals in question lose the capacity to make medical decisions or express their own wishes. Given the characteristics of dementia [10], completing advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for endof-life care of people with this disease [11]. 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. 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
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