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suffering rather than extend life and (4) desired trying minimally invasive treatments that had the potential to be withdrawn.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.
BACKGROUND: Evidence suggests that tube feeding persons with severe dementia (PWSDs) does not improve survival or quality of life, yet many continue to be tube fed. Reasons why caregivers choose to do so are not entirely understood. OBJECTIVE: To understand what shapes caregiver preference toward nasogastric (NG) tube feeding for communitydwelling PWSDs. DESIGN: A qualitative study that employed semistructured interviews. SETTING AND SUBJECTS: Primary informal caregivers of community-dwelling persons diagnosed with dementia Functional Assessment Staging Test (FAST) stage 7 in Singapore. METHODS: Caregivers participated in qualitative in-depth interviews during which their preferences toward NG tube feeding of PWSDs were explored. We used principles of reflexive thematic analysis to compare caregivers who expressed a preference for NG tube feeding with those who did not prefer it. RESULTS: We interviewed 27 caregivers of PWSDs. Most caregivers, 67% (n = 18), expressed a preference for tube feeding. We conceptualized four main themes describing what shapes caregiver preference toward NG tube feeding: (1) willingness to use tube feeding to prolong life at the expense of suffering, (2) deference to healthcare provider's (HCP's) recommendation, (3) caregiver knowledge of alternatives to tube feeding, and (4) caregivers' internal and external conflicts. CONCLUSION: Results from this study highlight the need for new inclusive approaches to shared decision-making between HCPs and caregivers regarding tube feeding for community-dwelling PWSDs.
Although many persons with severe dementia (PWSDs) are cared for at home by their family caregivers, few studies have assessed end of life (EOL) care experiences of PWSDs. We present the protocol for the PISCES study
Tan; Research during Integrated Care: Acute Hospital to the Community Hospital to Home for Hip Fracture Patients in Singapore Lessons learnt: Hip fracture has significant long-term functional and social implications in Singapore. There needs to be better integration of care/support from acute, to rehabilitation hospitals, and into community, to optimise functional recovery, reduce acute hospital length of stay, and reduce caregiver stress. Limitations: The study was limited by patient numbers.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.