Pilot study reveals that misassociation with hospice and lack of perceived benefits lead to declines in palliative care among seriously ill individuals and caregivers.
Background: Palliative care can help manage health challenges of seriously ill individuals, including persons living with dementia (PLWD), but is often declined. Objective: Explore why seriously ill individuals and caregivers decline palliative care. Methods: A pilot study using semi-structured interviews with three Medicare Advantage plan members and 15 caregivers, including 13 caregivers of PLWD, who declined palliative care (PC) within the previous year and focus groups with five PC staff. Results: Reasons for declining included mis-association with hospice, not seeing additional benefit to current care, and reluctance to change current care. PC staff provided additional reasons: challenges engaging with the outreach team, need for family-based decision-making, and reluctance to engage with unfamiliar persons. Conclusions: Incremental adjustments in PC communication may facilitate uptake, including providing explanations that are distinct from hospice, tailored to care needs, focused on reducing illness burden, and introduced by the current care team.
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Sheldon et al. (2025) studied this question.
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