What will happen to my mom? A grounded theory on nurses’ support of relatives’ end-of-life decision-making process for residents living with dementia in long-term care homes

BACKGROUND: Relatives of an older person living in a long-term care home with advanced-stage dementia must often make important and difficult decisions, including ones that impact the resident’s end-of-life. Healthcare professionals must support them in this decision-making process. The aim of this study was to propose a theory on nurses’ support of relatives who make end-of-life decisions for a resident living with dementia in a long-term care home. METHOD: A constructivist grounded theory approach was used, with a theoretical sample of nine nurses and 10 relatives whom we met for face-to-face interviews. Three documents on end-of-life care, which were available in the study setting, were also included. The analysis was carried out using the method proposed by Charmaz. FINDINGS: The findings highlight the importance of building a strong and trusting relationship between nurses and relatives. Furthermore, exploring the refusal of palliative or end-of-life care, supporting relatives’ need to witness firsthand the condition of the person living with dementia, and education at a “good” time are useful interventions that nurses can make to support relatives’ decision-making. CONCLUSION: Better support of relatives in end-of-life decision-making improves the well-being of relatives and older people living with dementia alike.