Advance care planning with patients of Islamic migration background: a qualitative study identifying the need for relational autonomy and hope-sustaining communication.

backgroundAdvance Care Planning (ACP) is largely based on ideas of individual autonomy and direct communication, which may conflict with the relational, cultural and religious perspectives of patients with an Islamic migration background. We explored the perspectives of patients with an Islamic background on ACP conversations within a Dutch healthcare system and which communication strategies may support more culturally appropriate ACP.

methodsA qualitative study was conducted consisting of two focus groups with cultural experts and healthcare professionals (N = 14) and interviews with patients with an Islamic migration background receiving palliative cancer treatment (N = 6) in the Netherlands. Semi-structured interview guides and an ACP introduction video were used to initiate discussion and reflection in both settings. Inductive thematic analysis was applied to all interview transcripts.

resultsThree main themes emerged: (1) ACP decision-making is predominantly family-driven: patients rely on relational autonomy through their family network, although individual preferences vary across generations. This highlights the importance of exploring patients' preferred role of the family in decision-making, facilitating family involvement in ACP conversations, and avoiding assumptions of individual decision-making as the default. (2) Cultural and religious meaning of illness and suffering strongly shapes how patients interpret the end of life. Rather than using concepts such as "quality of life", clinicians should explore what gives patients (spiritual) meaning and hope. Palliative care was sometimes misunderstood as hastening death, highlighting the importance of explaining the difference between symptom management and ending life. (3) Hope is a crucial determinant for maintaining engagement in ACP discussions. Direct communication, especially statements removing all hope, was experienced as distressing and damaging to trust. Patients valued communication that preserved hope, matched their emotional readiness, and showed genuine personal and cultural interest.

conclusionACP with patients with an Islamic migration background requires a relational, hope-sustaining and culturally sensitive approach. Decision-making is often family-driven, and individualistic perspectives on autonomy may not align with patient preferences. Religious meanings of illness and suffering influence perceptions of palliative care, while maintaining hope is essential for engagement. Adapting communication including preserving hope may enhance trust and offers concrete strategies to support appropriate ACP conservations.