Ethics of participation and social inclusion of older persons in research: lessons learned from the COVID-19 pandemic in Singapore.

The COVID-19 pandemic brought about safe distancing measures that are unprecedented. This article details the impact of the pandemic across research studies involving older persons in Singapore, and assesses the different strategies used to adapt to their needs in the context of evolving public health measures. The pandemic exposed diverse experiences of vulnerability among older persons, pushing for critical reflections on ethics of participation and social inclusion as the new research normal. We emphasize the importance of practicing flexibility: consideration for differentiated approaches to recruitment and data collection that should be proactively embedded in research designs for older persons during the pandemic and beyond.

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

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suffering rather than extend life and (4) desired trying minimally invasive treatments that had the potential to be withdrawn.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.

Caregiver Preference for Tube Feeding in Community-Dwelling Persons with Severe Dementia.

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 community-dwelling 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. J Am Geriatr Soc 68:2264-2269, 2020.