Improving Community-Based Palliative Care Explanations: Insights From Persons Declining Services

Background A growing number of older adults in the United States have multiple chronic conditions which contribute to decreased functional ability and increased healthcare utilization. Unmet supportive care needs place considerable strain on caregivers, particularly of persons living with dementia. Community-based palliative care can help seriously ill individuals manage their conditions and improve their quality of life. How palliative care staff explain these services to older adults and caregivers can impact engagement with palliative care. Objectives To explore knowledge of palliative care among older adults and caregivers in a Medicare Advantage population, including dementia caregivers, and identify areas for improving education and explanations. Methods Semi-structured interviews were conducted with seriously ill Medicare Advantage plan beneficiaries and caregivers (n = 22) who declined the plan’s palliative care program in the past year. Focus groups were conducted with palliative care staff (n = 5). Results Beneficiaries and caregivers had mixed understandings of palliative care, including: no knowledge, belief that it was the same as or pre-hospice, and accurate, but often one-dimensional understandings of it. Participants recommended providing individualized, tailored explanations focused on the person’s health concerns in simple language with follow-up materials to improve engagement with palliative care. Conclusions Small adjustments to how palliative care is explained may increase understanding among older adults and caregivers, particularly among those with limited or inaccurate knowledge. Among those familiar with palliative care, providing accessible and clear explanations customized to the person’s specific care needs can further broaden understanding and increase perceived relevance.