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

Dementia (London). 2022 May;21(4):1399-1415. doi: 10.1177/14713012221080253. Epub 2022 Mar 25.

Abstract

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.

Keywords: decision-making; dementia; end-of-life; family; grounded theory; long-term care; neurocognitive disorders; nursing; terminal care.

MeSH terms

  • Aged
  • Death
  • Dementia*
  • Grounded Theory
  • Humans
  • Long-Term Care
  • Nurses*
  • Nursing Homes
  • Terminal Care*