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suffering rather than extend life and (4) desired trying minimally invasive treatments that had the potential to be withdrawn.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

Family Caregiver Perspectives on Suffering of Persons With Severe Dementia: A Qualitative Study.

CONTEXT: Dementia involves suffering. Assessing the experience of suffering among persons with severe dementia is instrumental to delivering quality end-of-life care to them and their caregivers. OBJECTIVES: We aimed to assess dimensions of suffering from the perspective of family caregivers and the resulting impact on their decisions for the care of persons with severe dementia. METHODS: Between July 2018 and February 2019, we conducted qualitative in-depth interviews with 27 family caregivers of community-dwelling persons with severe dementia with Functional Assessment Staging Test staging 7. We asked caregivers if they perceived persons with severe dementia to be suffering and explored reasons for their perceptions. We analyzed data using principles of reflexive thematic analysis. RESULTS: We conceptualized five dimensions of suffering among persons with severe dementia from the perspective of their caregivers: 1) untreated physical or behavioral symptoms, 2) emotional pain, 3) loss of agency, 4) loss of engagement with society, and 5) loss of personhood. Suffering among persons with severe dementia influences their caregivers' expression of a wish for their death and caregivers' decision regarding the use of life-prolonging interventions for them. CONCLUSION: Findings suggest that suffering among persons with severe dementia can occur independent of physical symptoms and requires provision of person-centered care. The study adds to the understanding of end-of-life care in persons with severe dementia and their caregivers.

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.

A Prospective Longitudinal Study of Caregivers of Community Dwelling Persons with Severe Dementia (PISCES): Study Protocol.

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 (Panel study Investigating Status of Cognitively impaired Elderly in Singapore) which aims to describe the clinical course, health care utilization, and expenditures for community-dwelling PWSDs; and perceived burden, coping, resilience, anticipatory and prolonged grief among their caregivers. This ongoing multi-center prospective longitudinal study is recruiting primary informal caregivers of 250 PWSDs from major restructured public hospitals, community hospitals, home care foundations, and hospices in Singapore. Caregivers are surveyed every four months for two years or until the PWSD passes away and then at eight weeks and six months post-death to assess the bereavement of the caregiver. Survey questionnaires included validated tools to assess PWSDs' quality of life, suffering, behaviors, functional status, resource utilization; and caregiver's satisfaction with care, awareness of prognosis, care preferences, resilience, coping, perceived burden, distress, positive aspects of caregiving, anticipatory grief, and bereavement adjustment. We also conduct qualitative in-depth interviews with a sub-sample of caregivers. The survey data is being linked with medical and billing records of PWSDs. The study has been approved by an ethics board. Results from the study will be disseminated through publications and presentations targeting researchers, policy makers and clinicians interested in understanding and improving EOL care for PWSDs and their caregivers.