EXPERIENCES OF END-OF-LIFE CARE BY NON-WESTERN PATIENTS: A THEMATIC ANALYSIS.

Abstract

Introduction The use of end-of-life services, including palliative care and hospice, is increasing worldwide. However, ethnic minority groups utilize end-of-life services at a lower rate than majority groups despite having greater morbidity and mortality associated with both malignant and non-malignant terminal conditions. Additionally, the quality of patient experience has been demonstrated to be lower among ethnic minority groups. While the field of palliative care has recognized the importance of a cross-cultural approach, the specifics regarding how this could be implemented are ill-defined. One major barrier is that no one provider can be familiar with the many cultural groups that they may encounter in clinical practice. The purpose of this study is to summarize the evidence on the individual patient and family experiences of end-of-life services among non-Western cultures through a thematic analysis of the published literature. Methods The PubMed database was searched for qualitative studies on patient and family member experiences of end-of-life services among non-Western cultural groups. The outcome – end-of-life services – was defined as palliative care, hospice, or management by primary care medicine at the end of life. Results Of 392 abstracts identified in the initial search, the full-texts of 55 relevant articles were reviewed. The final yield amounted to 20 articles that met eligibility criteria. These 20 articles collectively represent the experiences of over 300 patients and family members. Multiple themes were identified. Themes include the role of language (including the use of professional interpreters, end-of-life vocabulary, use of family members for interpretation), the flow of information (use of alternative sources of medical information such as the internet, cultural healers, withholding of information by family members, and desire to know prognostic information), and the role of religion (religious interpretations of causation of illness, facing illness as a test of faith, fear of discussing religious beliefs with Western providers). Conclusions This review demonstrates the accumulating evidence supporting the importance of a cross-cultural approach to end-of-life care. Results indicate the benefits of including interpreters in medical communications, asking about patients’ religious beliefs, and providing medical information in a way that is individualized to the patient and family to improve the ethnic minority experience of Western end-of-life care. This research was funded by This work is supported by the Clinical and Translational Research Training in Late-Life Mood Disorders NIMH T32 (MH019986, PI: Aizenstein).