Gaining and maintaining consent: Ethical concerns raised in a study of dying patients

This article provides a frank discussion of the practical and ethical issue s that emerged during the process of setting up and conducting a participan t observation study within an inpatient hospice. A general overview of the participant observation approach is used to prefigure a discussion of wits strengths and weaknesses when employed as a research and evaluation tool am ong palliative care populations. Although participant observation provided a flexible and viable means of collecting data in the hospice, it also crea ted a number of dilemmas that in many cases could not be satisfactorily res olved, Difficulties arose, in particular, with obtaining informed consent f rom patients and assuming that consent remained valid after patients had de teriorated physically and mentally. Further complications stemmed from the role conflict and ambiguity inherent within an approach that requires a res earcher to work simultaneously as a participant and as an observer.