A narrative inquiry into care of the dying in an acute-care setting from the point of view of family

Abstract

A consequence of the biomedical model of cure which has dominated the delivery of health care over the last half-century has been the perception of death as failure, leading to inappropriate care for those who were dying within the hospital system. Counteracting this has been the separate development of the hospice movement from within which the specialty of palliative care has arisen. As an estimated sixty to eighty percent of deaths still occur within a hospital or nursing home setting, it is important to establish currently the nature of care of the dying in such settings. This thesis set out, through narrative inquiry, to explore the experience of dying in an acute-care setting from the point of view of family. It also set out to identify whether the goals of palliative care were identifiable in such care of the dying. A family member of each of six patients who died in the study setting was asked to tell the story of the care that was given over the time that their relative was dying. The interviews took the form of conversations, with some guiding questions in mind. The stories were outlined individually to honour the gift of each narrative and then analysed as a composite to give an overview of the experience. A number of themes were evident. These were named and grouped around three anchor theme phrases: "communication and understanding", "caring", and "ways of dealing with". Two further separate theme phrases were: "suggestions for change" and "taking part in the research as therapeutic". The research has presented a picture of the reality, for those who took part, of the experience of care of the dying in the acute-care setting from the point of view of family. It was shown to be a positive experience in some cases, but there were factors that led to it being a negative experience for some participants. A critical factor in the impact of the experience as positive or negative was communication. Issues to do with communication and understanding were multi-faceted and complex. The goals of palliative care were identifiable within care of the dying in the study setting.