Exploring the Quality and Experience of Care at the End of Life for Patients from Ethnocultural Minority Backgrounds

Background: Optimal end-of-life care is achieved when patients receive medical treatment that is aligned with their values and preferences for care. However, with an increasingly multi-cultural and multi-ethnic Canadian society, there are also increasingly diverse beliefs and values that inform high quality care at the end of life. This three-project dissertation aimed to explore factors that influence perceptions around the quality and experience of care at the end of life for patients from ethnocultural minority backgrounds in acute care settings. Methods: This dissertation employed a sequential explanatory mixed-methods research design. For the quantitative strand (Project 1), observational survey-based analysis was used to measure satisfaction with the quality of end-of-life care for patients from ethnocultural minority backgrounds. Findings from the survey-based analysis were used to identify and purposefully select a specific patient population subgroup for further qualitative exploration. For the qualitative strand (Project 2), a multiple case study design using semi-structured interviews was conducted with bereaved family members of seriously ill patients to gain an in-depth understanding of factors that influence perceptions around the quality and experience of end-of-life care. Finally, a systematic literature review (Project 3) was conducted in four electronic databases to understand the availability and effect of end-of-life decision-making tools on patient and family-related outcomes among racial and ethnic, cultural and religious minorities. Results: Among n=1,543 survey respondents, we found that satisfaction with the quality of care at the end of life was likely lower among Muslim patients (relative risk (RR) 0.46, 95%CI 0.21-1.02, p=0.056) or when there were language/communication barriers between families and healthcare providers (RR 0.49 95%CI 0.23-1.06, p=0.069). Qualitative interviews with n=5 bereaved family members of Muslim patients revealed four central themes that influenced perceptions around the quality and experience of care at the end of life: trust and confidence in the healthcare team overseen by medical experts; quality communication with medical experts; achieving patient goals of care; and dignity of care and respect for cultural and religious values. Patient culture, religion and religiosity did not appear to have a major influence on the medical decision-making process between patients, their families, and the healthcare team. Target areas identified for quality-of-care improvement included: communication, cultural respect, and emotional and psychological well-being for patients. A systematic review of the literature identified five types of tools (advance care planning programs; healthcare provider-led interventions; educational tools; decision aides; and communication strategies) that could be used to support end-of-life decision-making with patients and families of ethnocultural minority backgrounds. These tools demonstrated impact on documentation of end-of-life care plans, reduced preferences for life-prolonging care, and improved perceptions around the quality of patient-clinician communication and patient quality of life. Conclusion: Among ethnocultural minority patients, satisfaction with the quality of end-of-life care appeared lower among bereaved family members of Muslim patients compared to other religious affiliations. Trust and confidence, communication and information giving, and dignity of care, including cultural respect and patient well-being, emerged as important domains for improving the quality and experience of care at the end of life for the Muslim patient population. We identified several tools to support end-of-life decision-making with ethnocultural minority populations with impact on patient and family-related outcomes. Future research should seek to pilot and/or co-design – in close collaboration with patients, families and healthcare providers – communication tools, interventions and quality indicators to address gaps identified through this research.

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