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 modernity