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suffering rather than extend life and (4) desired trying minimally invasive treatments that had the potential to be withdrawn.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

Socio-economic inequalities in suffering at the end of life among advanced cancer patients: results from the APPROACH study in five Asian countries.

BACKGROUND: A systematic understanding of socio-economic inequalities in end-of-life (EOL) suffering among advanced cancer patients is required to inform efforts to reduce these inequalities as part of Universal Health Coverage goals. AIMS: To assess inequalities in multiple domains of EOL suffering among advanced cancer patients - physical, functional, psychological, social, and spiritual -, using two socio-economic status (SES) indicators, education and perceived economic status of the household. METHODS: We used cross-sectional data from surveys of stage IV cancer patients (n = 1378) from seven hospitals across five countries (China, Sri Lanka, India, Vietnam and Myanmar). We conducted separate multivariable linear regression models for each EOL suffering domain. We also tested interactions between the two SES indicators and between each SES indicator and patient age. RESULTS: Patients living in low economic status households /with fewer years of education reported greater suffering in several domains. We also found significant interaction effects between economic status of the household and years of education for all EOL suffering outcomes. Age significantly moderated the association between economic status of the household and social suffering and between years of education and psychological, social, and spiritual suffering (p < 0.05 for all). CONCLUSION: Results highlight that SES inequalities in EOL suffering vary depending on the suffering domain, the SES indicator assessed, and by patient age. Greater palliative care resources for patients with low SES may help reduce these inequalities.

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.