Intended for healthcare professionals

Education And Debate Theories in health care and research

Theories and studying the care of dying people

BMJ 1998; 317 doi: (Published 28 November 1998) Cite this as: BMJ 1998;317:1518
  1. Clive Seale, senior lecturer
  1. Department of Sociology, Goldsmiths College, London SE14 6NW

    This is the last in a series of six articles on the importance of theories and values in health research

    The quality of care for dying people is often investigated by interviews with dying people, or with carers before or after the death. Conventionally the respondent's account is treated as a resource for learning about previous events. Analysis is concerned with veracity, bias, and the validity of such data. This article describes a project in which the initial analysis of interviews took this approach. Subsequently, the analysis shifted towards a view of the interview as a topic, primarily concerned with events during the interview. This article also shows how theories of language and self identity led the researchers to a questioning of accepted views about the needs of dying people and their carers.

    Summary points

    • Examination of the language used in research interviews can lead to useful insights, conventionally dismissed as “bias”

    • Bereaved people use research interviews to defend their moral reputations and to understand distressing deaths

    • People seek to make dying meaningful by drawing on (or resisting) cultural scripts, among which is the psychological ideal of “aware dying” promoted in Anglo-American health care

    • One does not have to resolve philosophical debates about the truth status of interview data, or the existence of universal human qualities, to adopt this analytic stance

    Studying the quality of care for dying people

    The study concerned events in the final year of life of a nationally representative sample of 639 adults who died in 1987. 1 2 Surviving relatives and others who knew the people who died were interviewed to discover their perceptions of the quality of health care. To investigate bias, relatives' accounts were compared with those of healthcare staff about the symptoms of the people who died, the number of admissions to hospital, the incidence of various procedures, the effectiveness of pain …

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