Structures, tensions, and processes shaping long-term care home staff's role in end of life decision-making for residents with dementia

Abstract

Although long-term care (LTC) home staff of nurses and personal support workers spend the most time providing direct care, their role in end of life decision-making for residents with dementia has largely been unacknowledged. Staff's perceptions of their role play a significant part in how they support people with dementia and family care partners. The purpose of this study was to examine LTC home staff's perspectives of their role in end of life decision-making for LTC home residents with dementia.For this interpretive descriptive study, 21 semi-structured interviews were conducted in two urban LTC homes with nine personal support worker (PSWs), eight registered practical nurses (RPNs), and four registered nurses (RNs). Additionally, a focus group was conducted, consisting of each a PSW, RPN, and RN. A voice-centred relational analysis was used to situate LTC home staff's perspectives within broader social contexts. Findings suggest that little has changed in LTC homes in the last 50 years. Rooted in dichotomies between medical and social care paradigms, ideologies of rationality and professionalism created tensions, hierarchical roles, and staff's minimal involvement in decision-making. A relational approach is needed to account for the interdependency of care and the relationships that LTC home staff have with residents, family care partners, and the sociopolitical environment.