Dignity and the challenge of dying in nursing homes: the residents' view.

BACKGROUND: human dignity is discussed in almost all public debates on the care of the dying, as well as in international policies for health and social care of older people. Because nursing homes are gaining importance as places where residents live out their lives in modern western societies and since there is evidence that end-of-life care in nursing homes lacks quality, there is a growing discussion on introducing improved end-of-life care in these institutions. In order to accomplish this, the view of those who are most affected is of utmost importance.
OBJECTIVE: to explore the meaning of dignity with regard to end-of-life issues from the perspective of older nursing home residents in western Germany.
METHODS: this qualitative study is based on the Grounded Theory Approach, and the design included three steps of data generation; narrative interviews with residents of nursing homes constitute the main data pool (n = 20) of the results presented in this paper. Theoretical sampling was aimed at maximising the variety of organisational as well as residents' characteristics. Analysis of the transcripts was supported by Atlas/ti program and followed several different coding procedures and aimed at generating a concept of dignity.
RESULTS: dignity was differentiated into intrapersonal dignity and relational dignity, socially constructed by the act of recognition. Social relations and encounters are a prerequisite for relational dignity, which underlines the vulnerability of nursing home residents' who increasingly lack social networks. A broad spectrum of attitudes and behaviour, which aimed at recognising dignity, was bundled under the category 'not being a burden'. In this light, dignity was challenged most by the threat of illness and having care needs. This was fostered by the perception of insufficient care in the nursing homes. In the light of this concept, death with dignity meant 'death at the right time', though the residents in the sample did not want to comment on the time of death, other than aspects like (i) being active to the very last, (ii) respecting one's will and being allowed to die, (iii) not being in pain, (iv) being amongst persons close to one (valediction and showing respect).
CONCLUSION: the study emphasizes the high vulnerability of nursing home residents with regard to dignity. They place their dignity under the constraints of the need for help and care into question. This appears alarming, if one does not manage to, with the help of different ethics, obtain a new perspective on these phases of life. It is evident that the understanding of dignity is not solely individualistic and personal, but rather has a close relationship to social ideas of value, which ultimately influence the basic requirements of institutions in which 'frail old people' live.