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Exploring the Relationship Between Palliative Care Knowledge, Health Concerns, and Education Among Seriously Ill Older Adults and Their Family Caregivers Using Survey and Interview Data: A Novel Approach.

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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
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Improving Community-Based Palliative Care Explanations: Insights From Persons Declining Services.

Kira G Sheldon1, Kathryn H Bowles2,3, Elizabeth A Luth4

  • 1Institute for Health, Health Care Policy and Aging Research, Rutgers University, New Brunswick, NJ, USA.

The American Journal of Hospice & Palliative Care
|August 20, 2025
PubMed
Summary

Understanding palliative care is crucial for older adults and their caregivers. Tailored explanations focusing on individual health needs can improve engagement with these vital supportive services.

Keywords:
Medicare part Ccaregiversdelivery of health careolder adultspalliative carepatient acceptance of health care

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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.