Frames of dying: a qualitative study of end-of-life experiences of terminal Arab patients

死亡的框架:一项关于阿拉伯绝症患者临终体验的定性研究

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Abstract

BACKGROUND: Palliative care (PC) at the end of life (EOL) seeks to alleviate suffering and enhance dignity and quality of life, mostly for patients facing terminal illness. Yet within Israel's Arab population, cultural, religious and linguistic dynamics deeply shape the experience of illness, care preferences and trust in the healthcare system. Care provision often fails to address these sociocultural complexities. This study aims to explore and understand the views and attitudes of terminal Israeli Arab patients regarding PC, their dying experiences and the meanings they attach to them as shaped by cultural, religious and socio-political factors. METHODS: A descriptive qualitative study was pursued based on an interpretive-phenomenological approach. Data were collected through 14 in-depth semi-structured interviews conducted in Arabic with 13 terminally ill Arab patients and one family proxy between July 2023 and July 2025. Participants were recruited via convenience and purposive sampling to reflect sample diversity. Interpretive Phenomenological Approach and thematic analysis organized by the Atlas.Ti. software was used to analyze the data. RESULTS: Four central themes were identified: 1. God decides, but the System Fails - Religious acceptance of death coexists with mistrust in the healthcare system and perceived medical neglect; 2. Faith, Control, and Family: Navigating the EOL journey Decision making at the EOL is shaped by spiritual frameworks, patient's reluctance to accept PC and to engage in EOL discussions, and strong familial involvement, at times overriding patient autonomy; 3. Post-Mortem Concerns- Patients, especially parents, expressed intense anxiety regarding the fate of their dependents after death; 4. The Spiritual Architecture of the EOL Journey - Faith served as a moral and existential framework, influencing perceptions of suffering, sedation and the dying process. CONCLUSIONS: EOL experiences of terminal Arab patients are shaped by deeply rooted religious worldviews, family dynamics and perceptions of structural inequalities. Understanding these elements is vital to improving culturally sensitive PC that fosters trust, spiritual dignity and family-centered decision-making among minority populations.

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