Family decision-making in advanced dementia: narrative and ethics

Abstract

Background: Traditionally, family members become decision-makers for ageing parents with cognitive impairment. Our understanding of how families negotiate the ethical issues in this decision-making is still developing.

Aim: To describe and understand the ethical thinking used in end-of-life decision-making by family surrogates on behalf of their cognitively impaired elders.

Methods: Qualitative research with eight focus groups that included 39 family members of severely impaired nursing home residents in Minnesota. Transcripts were analysed using a thematic approach.

Findings: The family surrogates described their decision-making as a process based in the families' stories and as extensions of the elders' identities. Four themes emerged from the analysis of the families' decision-making: (i) acquisition of decision-making authority, (ii) decision-making for short-term or long-term time frames, (iii) justifying the decisions and (iv) advocacy for the elders.

Conclusions: The families in these focus groups used the elders' life stories to frame their decisions for care. Providers working in primary care settings who work with families in making care decisions for cognitively impaired elderly patients may find narrative ethics more pertinent than principle-based ethics in understanding families' perspectives and priorities, while also recognizing their decision-making transition from using the principle of autonomy to that of beneficence.