Researching the end-of-life in old age: cultural, ethical and methodological issues

Abstract

ABSTRACTIncreased life expectancy has strengthened the association between old age and death, with significant implications for gerontology and for the generation of knowledge through research. The global rise in chronic disease has had a significant impact on the duration and shape of dying trajectories in old age and their variations. This development poses ethical and methodological challenges for researchers, not least because it is often difficult to establish whether an older person is ‘dying from’ as opposed to ‘living with’ one or more diseases. This paper reports a comprehensive literature review of empirical research on the end-of-life in old age, and has two inter-related themes. It explores the social and cultural contexts of death and critically analyses the methods and ethical approaches adopted by researchers. Cross-cultural studies and studies in which cultural factors were of prime interest were selected with a view to examining the concept of a ‘good death’ in old age. The paper discusses the evidence of cultural similarities and differences and the impact of social and cultural change on ideas concerning a good death. It identifies contemporary influences and pressures on end-of-life care for older people and discusses the significance of communication and the roles of families and service providers. The paper concludes by identifying substantive and methodological lessons for researchers in gerontology and suggests ways in which the impact of research might be enhanced.