Discordance between dementia caregivers' goal of care and preference for life-extending treatments

Abstract

Background: Many older adults with severe dementia receive potentially life-extending treatments even when caregivers do not wish to prolong their life inappropriately.

Objective: Explore factors that influence caregiver preferences for potentially life-extending treatments for older adults with severe dementia, and reasons for discordance between overall end-of-life care goal and treatment preferences.

Design: Semi-structured in-depth interviews asking caregivers their overall end-of-life care goal for older adults and preferences for intravenous (IV) antibiotics, tube feeding and cardiopulmonary resuscitation (CPR).

Participants: A total of 26 caregivers of community-dwelling older adults with severe dementia in Singapore.

Approach: Reflexive thematic analysis.

Results: Most caregivers' (77%) overall end-of-life care goal was 'no life extension'. Yet, 80% preferred IV antibiotics for a life-threatening infection, 60% preferred tube feeding and 45% preferred CPR. Caregivers preferred these treatments because they (1) perceived letting go by withholding treatments as unethical, (2) felt they had no choice as they deferred to the health care provider, (3) wanted to alleviate suffering rather than extend life and (4) desired trying minimally invasive treatments that had the potential to be withdrawn. Themes explaining discordance were (1) feared regret about making the 'wrong' decision, (2) considered treatments to address immediate needs even when long-term goal did not match providing that treatment and (3) anticipated disagreement with other family members on overall goal of care.

Conclusion: To reduce discordance between caregivers' overall end-of-life care goal and preferences for life-extending treatments, clinicians can use a shared decision-making approach involving discussions of both their overall end-of-life care goal and treatment preferences.

Keywords: caregivers; decision-making; dementia; older people; qualitative research; terminal care.