Constraints of the ordinary: "being with" patients in a hospice in Scotland

Abstract

The phenomenon 'being with', in relation to caring for patients who are close to death, is an important aspect underlying specialist palliative care. This study examines how 'being with' is constructed in day-to-day nursing practice in an inpatient hospice in Scotland.

This thesis begins with a formulation of 'being with' in facing death as part of Cicely Saunders' notion of a better way of caring for dying patients. The thesis proceeds to outline my methodological and analytical approach using principles of ethnomethodology developed by Harold Garfinkel and Charles Taylor's philosophy of interpretation. Four chapters then present the analysis of data, drawing predominantly on material gathered through observation.

In the beginning of this study, the nurses and nursing care assistants told me that 'being with' was part of their day-to-day care within the hospice. We seemed to share the same understanding of the phenomenon. However, I concluded during participant observation that 'being with' in facing death, as formulated by Saunders, was absent from the day-to-day care of patients in the hospice. By devising a methodology and approaches to analysis of data based on Garfinkel's and Taylor's work, I came to understand that the nurses' and nursing care assistants' perception of 'being with' was different from the way Saunders formulated 'being with'. I argue that the nurses' and nursing care assistants had constructed 'being with' when caring for patients who were close to death as providing comfort rather than dealing with the uncomfortable psychological and emotional effects of facing death. The consequence of this was that the patients were 'comforted' but they were not encouraged to face death in the way Saunders suggests, and as I had endeavoured to do in my own practice, thus leaving out an important part of specialist palliative care.

In the last chapters of the thesis I discuss my findings by revisiting Saunders' notion of 'being with' as a better way of caring for dying patients, and by exploring Heidegger's ideas of how human beings can face death. Through revisiting Saunders' notion of 'being with', I came to the view that there is a tension between the 'theory' and the 'practice' of 'being with' in relation to its practical outworking. It may be that Saunders has underestimated how difficult it is for nurses and nursing care assistants to 'be with' patients in facing death due to the physical demands of caring for dying patients and secondly to facing death per se. In this discussion I compare Saunders' discussion of the phenomenon of death with that of Heidegger. There are similarities between their understandings but I also found tension between their thinking. By exploring this I conclude that the nurses and nursing care assistants had constructed 'being with' in terms of providing comfort in order to manage both their own and their patients' feelings and thoughts about death and dying. On the basis of this study I offer some important insights into the tension between the hospice ideology of a 'good death' as provided by Saunders, and the day-to-day management of care of dying patients in this hospice.