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

Area of Science:

• Geriatrics
• Palliative Care
• Health Services Research

Background:

• Increasing prevalence of multiple chronic conditions in older adults leads to functional decline and higher healthcare use.
• Dementia caregivers face significant strain due to unmet supportive care needs.
• Community-based palliative care improves quality of life for seriously ill individuals.

Purpose of the Study:

• Assess knowledge of palliative care among Medicare Advantage beneficiaries and caregivers, including dementia caregivers.
• Identify barriers and facilitators to palliative care engagement.
• Determine optimal methods for explaining palliative care services.

Main Methods:

• Conducted semi-structured interviews with 22 seriously ill beneficiaries and caregivers who declined palliative care.
• Held focus groups with 5 palliative care staff members.
• Explored understanding and perceptions of palliative care services.

Main Results:

• Beneficiaries and caregivers exhibited varied understanding of palliative care, ranging from no knowledge to misconceptions (e.g., equating it with hospice).
• Accurate understandings were often limited or one-dimensional.
• Participants suggested individualized, simple language explanations tailored to health concerns, with follow-up materials.

Conclusions:

• Simple adjustments in explaining palliative care can enhance understanding among older adults and caregivers.
• Customized, accessible explanations tailored to specific needs can improve perceived relevance and engagement.
• Clear communication is key to overcoming knowledge gaps and misconceptions about palliative care.