Balancing between maintaining and overriding the self: Staff experiences of residents' self-determination in the...

To investigate, from the staff perspective, residents' self-determination during the palliative phase while in residential care.

Residential care facilities have a high prevalence of palliative care needs and dependency. The ability of residents to make and execute decisions may be hindered by their cognitive and physical limitations. There is a need to investigate how residents' self-determination is affected during the palliative phase in residential care.

Twenty individual, semi-structured interviews with Registered Nurses, enrolled nurses and physicians working in residential care facilities were analysed with inductive qualitative content analysis.

The overarching main theme, Balancing between maintaining and overriding the residents' self, illuminated how strengthened self-determination affected the residents' self in a positive way, while undermined self-determination affected the residents' self in a negative way. Factors that strengthened self-determination were facilitating the residents' own decision making, acting in accordance with the residents' wishes and acting as the residents' spokesperson when necessary. Factors that undermined self-determination were residents' dependence, others setting the terms, for example, being controlled by routines, insufficient communication, for example, lacking end-of-life care planning and others crossing the boundaries of one's personal sphere.

There are serious threats to residents' self-determination but also strategies to cope with these threats. Physical and cognitive frailty and other people setting the terms hinder both making and executing decisions. However, staff can strengthen residents' self-determination and assist in the presentation of residents' self by adopting a relational view of autonomy and by taking personal preconditions into account. There is a need to come to terms with the lack of end-of-life care planning and to give residents a voice in these matters. Implementing a palliative approach early in the illness trajectory could facilitate communication about end-of-life care both within the group of staff and among the residents, relatives and staff.

To maintain residents' self-determination and protect their self, staff need knowledge about residents' life stories and personal preconditions. This in turn requires continuity of care and spending time with residents to build relationships. Implementing an early palliative approach with a focus on factors that promote quality of life for each resident might facilitate communication and enhance decision making both in everyday life and in planning for end-of-life care.