Diversities in approach to end-of-life: A view from Britain of the qualitative literature

Abstract

Objective: To systematically investigate qualitative literature on end-of-life issues and ethnicity/race/diversity, employing qualitative methods and philosophical concepts.

Design: A database of 119 references was compiled using a range of techniques, including information foraging theory. Qualitative principles, such as ‘citation snowballing’ and ‘data saturation’, were utilised to gather and consolidate the literature. A model of ‘signal and noise’ was employed to balance methodological rigour against the strength of the message itself in the literature included in the final review.

Results: Existing reviews of qualitative literature on palliative care are minimal, with little mention of ethnicity/race/diversity; palliative care generally pays little attention to qualitative methods. Concepts of ethnicity/race/diversity are socially constructed and these extend to the literature on end-of-life. Changing terminology of palliative care reflects emerging and competing ways to talk about the care provided to dying patients.

Conclusions: The ‘cookbook’ approach to diversity creates new myths or stereotypes, compounding this with inaccuracies or misunderstandings. Aspects other than formal religious beliefs are overlooked and not all members of an ethnic group will routinely follow the beliefs of a specific faith. Healthcare providers must recognise that the basic values, principles and assumptions of Western medicine and bioethics are themselves historically situated and culturally determined. The rights of families to medical knowledge and their roles in decision-making are just as valid, inalienable and crucial to the cultural belief systems of many ethic minority communities as patient autonomy models are to Western medicine.

A common theme emerging through the studies reviewed is a need for sensitivity to the varying expectations and mix of involvement of patients, practioners and families in end-of-life care and the need for information-sharing and decision-making amongst them, along a continuum of health and social care constructed by synthesis and integration of models emerging through this review.