Self-determination in a Total Social Institution’: Death Work in Swiss Nursing Homes

Background: The Palliative Care ideal of self-determined dying is spreading from specialized services into other care institutions confronted with end-of-life care, e.g. the nursing home. From a sociological perspective, however, nursing homes are characterized by traits of Goffman’s ‚total social institution’, i.e. they are struggling with contexts, norms and practices that severely constrain self-determination. Based on an ethnographic research project exploring Swiss nursing home end-of-life care, professional practices to handle this contradiction are discussed. Objectives: To identify emerging professional practices of nursing home caregivers in dealing with contradictions between Palliative Care ideals of self-determination and constraints of the ‘total social institution’. Design and methods: Qualitative design based on ethnographic fieldwork in two Swiss nursing homes. Data collection methods: extensive participant observation, ethnographic interviewing, documentation analysis. Data analysis followed the principles of Grounded Theory. Results: Nursing home end-of-life caregiving is characterized by a pragmatic variation of Palliative Care, focusing on practices that easily integrate into daily care (i.e. not disturbing or newly legitimizing existing routines). Due to scarce institutional resources and the characteristics of dying in very old, multi-morbid age, the norm of self-determination is challenging to fulfill. In the last days of life, residents are most often not in a position to express their will, and caregivers are obliged to interpret minimal bodily signs as expressions of ‘supposed will’. However, professional caregivers’ reflections on dying trajectories, as well as their practices of documenting are characterized by discursive constructions of self-determination. Discussion: The need to pragmatically decide in situations where residents are not in a position to explicitly express their will is a decisive characteristic of nursing home ‘death work’. The discursive construction of residents as actively self-determined, autonomous subjects may be interpreted as a strategy to deal with these conflicting norms in everyday practice. Speaking in sociologists’ terms, insecurities of framing and the compulsion to interpret are professional constants in nursing home endof- life care in the context of reflexive modernit