Ethical issues in qualitative research at the end of life

Abstract

This article discusses some of the ethical issues associated with the use of qualitative research methods in two doctoral studies conducted by nurses in a department of palliative medicine. These issues are of particular relevance with the increasing emphasis on evidence-based practice in palliative care. Both studies used multiple methods of data collection within a case study design. Study one (Seymour, 1997), an ethnography of death and dying in two critical care units, used participant observation, documentary analysis and semi-structured interviews to construct 14 detailed case studies. Each case consisted of the interactions and perceptions of those involved with a purposively selected series of critically ill individuals. Study two (Ingleton, 1997) was based on externally commissioned work and provided a longitudinal analysis of the evaluation of two palliative care services. Triangulated data from documentary analysis, structured and unstructured interviews, questionnaire surveys and observation were used. Specific ethical challenges which arose during the conduct of these studies are highlighted, showing how these were present at all stages of the research process. The article concludes by proposing a guide for the conduct of ethically responsible qualitative research.