Preferences and experiences of Muslim patients and their families in Muslim-majority countries for end-of-life care: a systematic review and thematic analysis

Abstract Background Care for people with progressive illness should be person-centred and account for their cultural values and spiritual beliefs. There are an estimated 1.7 billion Muslims worldwide, largely living in low-and middle-income countries. Aims This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients/families for end-of-life care in Muslim-majority countries Design Systematic review Data sources PsychoINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials Trial, Pubmed, ASSIA, Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and grey literature, included. Qualitative studies analysed using thematic analysis and quantitative component provided triangulation. Results The initial search yielded n=5,098 papers, of which n=30 met the inclusion criteria. A total of 5,342 participants (4,345 patients, 81.3%) were included; 97.6% had advanced cancer. The majority (n = 22) of studies were quantitative. Three themes and sub-themes from qualitative studies were identified using thematic analysis: selflessness (burden to others and caregiver responsibilities), ambivalence (hope and hopelessness) and strong beliefs in Islam (beliefs in death and afterlife, closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families. Conclusion Despite the scarce evidence of relatively low quality, the analysis revealed core themes. To achieve palliative care for all in line with the ‘total pain’ model, beliefs must be identified and understood in relation to decision-making processes and practices.