Death and late-stage dementia in institutions : a cultural analysis

The first purpose of this study was to describe the deaths of fifteen nursing home residents with late-stage dementia. The devastating effect of dementia on a person has been called a ‘living death’ (Woods, 1989). The caring which occurs when someone is going through this process in a nursing home was recorded and analysed. In analysing this act of caring, the second purpose was to look for the origins of the structures and the sources of pressure that shaped the context and therefore helped determine the behaviour of the various groups under observation. These groups were residents and their relatives, the staff of the nursing home and the treating doctors. Before commencing observations and carrying out this study, an understanding needed to be developed of: the condition of dementia as it is perceived by health professionals and presented in the media; the institutions in which the majority of people with dementia end their days; the background and conditions of the staff who nurse in them; the models of care that guide and determine policies; and the conceptions of life and death which underpin relevant laws and moral standpoints. Accordingly, in part 1. chapter 1 the history, causes, pathology and effects of dementing conditions are examined. Relevant medical and lay literature including media influences are examined which pertain to the subject of death and dementia and nursing home care. The history of this institutional care is briefly examined together with the growth of the discipline of gerontological nursing. Chapter 2 discusses some of the effects of this history on present day care and the concept of emotional work being carried out within the present day aged care public policy regulations. The moral arguments surrounding illness and dying in Australian society today are briefly discussed. Chapter 3 describes the conceptual framework for the study, the ethnographic method that has been employed and an outline of critical theory as the basis for analysis. The chapter concludes by recounting the practical steps taken to arrange the field work, secure the consent of participants, record data and gather documents, and outlines the ethical considerations given to the undertaking of the study. Chapter 4 describes the context in which the study took place and the first tentative exploration of the culture from an etic perspective. Part 2 describes the death trajectories observed and raises some questions about alternative strategies that may have been considered within a different paradigm of caring. In chapter 5 the death trajectories of each of the fifteen residents in the study are described, each written with a particular emphasis to illustrate aspects of the culture of care that emerged through thematic analysis. Observations, comments and feelings from staff and family are wound in and around these case studies. Chapter 6 looks more closely at the impact of policy and institutional pressure on the milieu in which these deaths took place. Part 3 draws conclusions from the observations and makes suggestions for emancipatory change as viewed from the author's standpoint of critical ethnographic analysis. In the final chapter an argument is presented for policy change that leads a movement towards palliative care practices for people with late-stage dementia. Approaches to implementation of palliative care will need to take account of any expression by the resident such as an advanced directive, indicating a preferred approach to treatment in the period prior to death; a need for a better understanding of such issues as the significance of body breakdown, the manifestations of pain and electrolyte imbalances; the surrounding ethical complexities and shift in public opinion, and perhaps, most of ail, the culture of the institutions in which this dying will take place. A definition of late-stage dementia which might be used in determining patterns of care is set out. A discussion about changes in practice which relate lo communication with treating doctors, the administering of antibiotics, the relief of pain, the mobilisation of residents and the provision of food and water takes place in light of the evidence found. The discussion of these issues is raised in the form of debate. Each aspect needs more rigorous analysis and information so that evidence-based practice, rather than care which is value-laden and emotional, can be used when treatment decisions are made for people with late-stage dementia.