To Örebro University

Background: In Sweden, assistant nurses are the group of professionals who have a great deal of contact with older, dying persons in nursing homes. They have substantial experience in this area. It is therefore important that their voices are heard about their experience of how they identify that an older person is dying.

Aim: The purpose was to describe assistant nurses’ experiences of signs of dying among older people in nursing homes.

Method: A qualitative manifest content analysis was used. Four interviews were performed with eight experienced assistant nurses, individually or in groups, from two nursing homes.

Findings: The result is characterized by the assistant nurses’ descriptions of both subtle and manifest signs that an older person is dying. The analysis led to two categories: “the older person expresses insight” and “the older person’s body changes”. The first of these mainly involved observations of psychosocial changes, while the second mainly contained observations of bodily changes.

Conclusion: The clinical experiences as the assistant nurses achieve give valuable incitements for creating good palliative care. The assistant nurses must be seen as a significant part of the care team. They should be offered continuous education and support regarding palliative care in order to develop their skills and practical knowledge.

Nursing homes are a setting in which death and dying is common. How death and dying is articulated and the actions that take place in a nursing home constitute a discourse that guides the staff in their work. The aim of this study was to explore the discourse of death and dying in nursing homes from the perspective and understanding of the staff. The study draws on Foucault’s discourse analysis. Data are from five focus-group discussions held with 28 staff of four different nursing homes in Sweden. The findings show that the discourse had three characteristics : (a) dying was silent and silenced, (b) emotions were pushed into the background, and (c) attentiveness to death arose after the moment of the elderly person’s death. The structure of the discourse was characterised by a movement between two positions, avoiding and confronting death, the main focus being on avoidance. The articulation and practices of silence highlight a need to regard dying as a process that requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and support for the staff in their work. The study demonstrates that nursing-home staff need more knowledge and support to enable them to feel that they do a good job.

In Sweden, increased care in ordinary housing has contributed to a reduction of rooms in sheltered accommodation. The allocation of rooms has become stricter. Only those whose care needs cannot be met in any other ways are allocated such accommodation. The aim was to explore the waiting time between the transfer decision and the accomplishment of the move from the initial form of care to sheltered accommodation as well as whether there were differences in waiting time in relation to certain demographic data.

Method: 445 decision documents were analysed. Mean and 95% confidence intervals (CI) for waiting time and date of the move to sheltered accommodation were calculated. Differences between mean age and waiting time were analysed using Student's T-test. Effects of age, gender and cohabitation on waiting time were estimated by means of multifactor linear regression.

Results: The main finding was that the difference in mean waiting time was shortest when moving from hospital, irrespective of destination. There were no significant differences in waiting time in relation to gender, age or cohabitation.

Conclusion: The reason for a move was often described by means of abstract standard formulations. There is a need for standardised models and assessment instruments in order to ensure older people's safety and to compare different forms of accommodation.

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

Seven care managers employed by a large municipality in Sweden were interviewed concerning their reasoning regarding end-of-life care for older people. Data were analyzed using a hermeneutic approach. The results showed that end-of-life care was considered to constitute a small part of the care managers’ work and was something they did not focus on in general when assessing care needs. Two different pathways to death – the natural and the medical – were identified. In the natural pathway, death was invisible and the care was more routine-oriented. In the medical pathway, death was visualised and the care more individualised. Neither of the pathways paid attention to communication or existential needs. Thus, there is a need for a palliative pathway to death based on the philosophy of palliative care, which could provide guidance for care managers and promote opportunities for older people to achieve a dignified dying and death.