Advance care planning perspectives of older adults and their family members with Turkish and Moroccan backgrounds in Belgium

Belgium's growing ethno-cultural diversity brings challenges, especially for older adults with Turkish and Moroccan backgrounds. These groups face healthcare barriers due to linguistic, educational and cultural differences, which hinder the understanding and discussion of (end­ of-life) medical issues and decisions. Advance care planning (ACP) enables individuals to outline their end-of-life care preferences while relatively healthy. Ethnic-minority groups engage less with ACP due to limited knowledge, familial elder care, perceived conflict with religious beliefs, healthcare system distrust and healthcare providers' neglect of cross-cultural perspectives. Belgium's patients' rights law outlines entitlement to person-centred healthcare, with comprehensive information provision and the right to consent. ACP, which involves ongoing discussion among healthcare providers, patients and their loved ones, is a significant component of these rights. ACP discussions cover patients' values, goals and end-of-life care preferences and choices (e.g. about burial and organ donation), with the goal of mutual plan development. However, many patients, especially older adults, expect doctors to initiate such discussions, and clinicians struggle to involve patients and family members.
More research on the impacts of cultural diversity on ACP discussions in Belgium is needed to guide appropriate ACP adaptation. ACP implementation in Belgium remains inadequate, especially among minority groups and individuals with low (health) literacy. Studies of ACP engagement among older adults with Turkish and Moroccan backgrounds, members of large migrant populations in several European countries, are scarce. The current literature reveals poor communication and conflicting perspectives of healthcare professionals and ethnic­ minority patients and family members, but complexities have been overlooked due to the assumption of cultural homogeneity.
For this dissertation, four qualitative studies were performed to characterise ACP knowledge, experiences, views, facilitators and barriers among older adults of Turkish and Moroccan origins (studies 1 and 2), older Turks requiring palliative care (study 3) and family members of older Turks and Moroccans (study 4) in Belgium. General practitioners facilitated recruitment, and face-to-face semi-structured interviews were conducted in participants' native languages. The data were analysed using the constant comparative method (iterative coding and categorisation of ACP-related transcript content; studies 1 and 2) and combined deductive/inductive coding-reliability thematic analysis (additionally involving theme

identification; studies 3 and 4). The research team regularly reviewed preliminary findings and refined insights together to enhance the credibility and reliability of the findings.
Consistent with findings for diverse groups with low educational levels, literacy and healthcare system familiarity worldwide, participants in all studies lacked ACP knowledge and experience with healthcare providers. This differs notably from the commonness of advance directive preparation and/or preference specification in medical records among native-Belgian older adults. Many participants, however, had discussed preferences for end­ of-life aspects such as life-prolonging treatment, nursing home admission and burial location with family members. The participants had diverse perspectives on ACP, ranging from acceptance to dismissal. Most considered it to be useful and expressed willingness to address their end-of-life care, similar to Belgian frail older adults. The provision of understandable information in the older adults' native languages during interviews increased ACP acceptance, aligning with findings highlighting the impact of native language use on ACP understanding. Some participants' views reflect a decline in traditional family caregiving dynamics among Turkish and Moroccan immigrants, whereas other participants retained confidence in their children's caregiving based on traditional filial responsibilities common in collectivist societies. Many participants considered ACP to be compatible with their religious beliefs, with initial religious objections diminishing after the receipt of detailed explanations and examples. However, religious beliefs shaped participants' views on end-of-life discussions, especially those requiring palliative care, many of whom emphasised God's determinative role in life and death. Some family members, similar to those of native-Belgian older adults, felt that ACP discussions would reduce the emotional burden and uncertainty of end-of-life decision making, whereas others were resistant to the discussion of some topics or were confident that they understood their relatives' desires without discussion, which has been shown in related research to often be inaccurate. Some participants' intention to override their relatives' wishes for religious reasons echoes ACP-related challenges observed among other individuals with Muslim backgrounds.
The primary barrier identified was the lack of ACP knowledge, which participants attributed to their low education levels and language barriers. This factor leads to low health literacy, impacting involvement in healthcare decisions, as seen previously among older Turkish and Moroccan adults. The second barrier was the reliance on familial support, particularly among participants with strong collectivistic cultural values and low educational levels, who prioritised filial caregiving responsibility and felt unsure about making appropriate decisions.

Some family members of older adults also expressed such reliance, reflecting their relatives' trust in their judgment over personal involvement, which has been documented in several frail older-adult (including native-Belgian) populations. The third barrier was the avoidance of ACP discussions due to the taboo nature of discussing illness and death and the perceived emotional burden on older adults and their family members. This perspective contradicts the assertion in the Belgian ACP guidelines that ACP conversations rarely induce stress or anxiety, and indicates the importance of healthcare providers' sensitivity. The fourth barrier was the perceived lack of urgency for ACP discussions while the older adults were in good health, which aligns with the general tendency to prioritise immediate well-being over future planning documented in ACP research. The fifth barrier was related to personal and relational characteristics, including older adults' stubbornness and/or parental (especially paternal) authority. These factors reflect traditional (gender) hierarchy dynamics in Turkish and Moroccan families.
The primary ACP facilitator was the distribution of ACP Information in older adults' native languages, which has been associated with increased ACP acceptance and completion rates. Family members emphasised the need for general practitioners to cautiously initiate ACP discussions using examples to avoid distressing their relatives, given the typically trusting nature of doctor-patient relationships in Belgium. The second facilitator was increased ACP knowledge among older adults' children to streamline future decision making and mitigate potential worries or conflict. The encouragement of family members' involvement inACP discussions was also seen as vital. The third facilitator was older adults' concern about future care needs, driven in some cases by a lack of trust in their children's ability to manage such needs. This perspective is rooted in the awareness of changing family structures and caregiving norms, aligning with similar concerns seen among native Belgians and other immigrant groups adapting to Western values. The fourth facilitator, also documented in other populations (e.g. first-generation Muslim immigrants in the United States), was some older adults' desire to avoiding burdening their children. The fifth facilitator, also recognized in other populations, was recent family experience of severe illness or death, which prompted discussion of end-of-life care preferences, especially among older Turkish adults requiring palliative care.
Based on these findings, several practice recommendations can be made. Older adults of Turkish and Moroccan origins and their family members should be given easily understandable ACP information in their native languages, and ideally culturally adapted

visual information (e.g. short films or posters). Awareness campaigns could be implemented (e.g. via social media, waiting rooms and cultural associations). General practitioners should initiate ACP discussions in a culturally sensitive, person-centred manner (rather than generalising) while patients are relatively healthy, and use relatable examples beyond reference to concrete aspects of ACP. These discussions would be improved by the use of professional interpreters (e.g. intercultural mediators) and the (carefully mediated) involvement of multiple family members.
ACP studies conducted with the palliative care populations of older Moroccan adults and family members of older Turkish and Moroccan adults are needed to complement the present research. Effective methods for the involvement of multiple family members in ACP conversations, challenging the assumption of single primary caregiver involvement, also need to be explored. Moreover, similar research could be conducted with older adults and family members with other migration backgrounds in Belgium, to enable culturally sensitive ACP information provision. The roles of perceived discrimination in the healthcare system, distrust of advance directives and poor diagnosis/prognosis disclosure in ACP engagement among ethnic-minority groups should also be examined. Upon implementation, the above practice recommendations should also be assessed.