När livsrummet krymper : vård och omsorg av äldre personer i livets slutskede

Sammanfattning: This research focused on the life situation of older people, who had moved to a nursing home at the end of life, from the perspectives of the older people themselves, care managers and nursing staff. The thesis is based on an analysis of 446 care manager assessments and decisions, interviews with seven care managers, six older people and 28 nursing staff. The main fi ndings are: (I); that there was a statistically signifi cantly shorter waiting time for a move to a nursing home for older people who were in hospital compared to those who were living in their own home at the time of the decision. Seventy percent of the decisions made by care managers’ concerned women. The waiting period for men was fi ve days shorter compared to women. (II); that the care managers’ descriptions revealed that their assessments of the needs and wishes of the older people were infl uenced by whether or not it was clear that the older person had only a limited time left to live. The care managers’ way of reasoning has been conceptualised as two approaches, the medical and the natural path to death, where the former was characterised as fl exible and collaborative, whereas the latter was governed to a greater extent by a “wait and see attitude”. (III); that the older people’s experiences of living in a nursing home have been conceptualised into three themes: feeling like a stranger in an unfamiliar culture, being excluded from life, and living while waiting for death. The latter involved a deep insight that life would soon come to an end; a fact the staff appeared to take into account to only a minor extent. (IV); that dying and death was characterised by a discourse of silence, with tension between avoidance of and a confrontation with death. Staff members who expressed a fear of death held it at a distance by concentrating on practical tasks and avoiding close contact with older people who were dying. The thesis highlights the fact that the dying and death of older persons was characterised by a discourse of silence and several transitions. Death was not a topic that the staff members or older people generally talked about, and care in the fi nal phase of life was not actively or explicitly planned. In terms of access to a nursing home bed, only older people with an extensive need for care obtained such a place. These fi ndings imply that all older people can be said to be in need of palliative care. The older people in our study were in a liminal phase, and waiting for death. Feelings of social and existential loneliness and that their living space was shrinking were evident. It was also clear that the older people and staff members inhabit the same place but appear to be in two different sub-cultures, where the norms and values that guided the staff members’ attitudes were dominant. Keywords: transition, older people, end of life care, palliative care, nursing home, caring, care manager and staff