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Improving Community-Based Palliative Care Explanations: Insights From Persons Declining Services
Kira G Sheldon, Kathryn H. Bowles, Elizabeth A. Luth. American Journal of Hospice and Palliative Medicine®, 2025-08-20
Topic: Risk, prevention and care in population studies
BackgroundA 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.ObjectivesTo 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.MethodsSemi-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).ResultsBeneficiaries 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.ConclusionsSmall 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.
Key findings
- 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.ObjectivesTo 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.MethodsSemi-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).ResultsBeneficiaries 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.ConclusionsSmall 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.
Why it matters
Interviews with 22 Medicare Advantage beneficiaries and caregivers who declined palliative care, plus focus groups with 5 staff, found mixed understanding of what palliative care is, with some believing it was the same as or pre-hospice. This concerns how palliative care is explained and whether people engage with it, not treatment, cure or prevention of dementia.
Study details
- Participants22
- Evidence strengthLow
How this study scored 37/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (American Journal of Hospice and Palliative Medicine®) |
| Journal's citation record | 1 / 4 | American Journal of Hospice and Palliative Medicine®: journal h-index 85 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 1 / 4 | 22 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 1 / 7 | Cited 1 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 1 / 6 | Cited 0.8× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 0 / 4 | Cited 1 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 1 / 4 | Last-listed author Elizabeth A. Luth: h-index 16 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of Pennsylvania: institution h-index 1,859 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 40831363) |
| Free to read | 2 / 2 | Free to read |
| Total | 37 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
APA 7th
Sheldon, K. G., Bowles, K. H., & Luth, E. A. (2025). Improving Community-Based Palliative Care Explanations: Insights From Persons Declining Services. American Journal of Hospice and Palliative Medicine®. https://doi.org/10.1177/10499091251368798
Vancouver
Sheldon KG, Bowles KH, Luth EA. Improving Community-Based Palliative Care Explanations: Insights From Persons Declining Services. American Journal of Hospice and Palliative Medicine®. 2025. doi:10.1177/10499091251368798. PMID: 40831363.
BibTeX
@article{sheldon2025-40831363,
author = {Sheldon, Kira G and Bowles, Kathryn H. and Luth, Elizabeth A.},
title = {{Improving Community-Based Palliative Care Explanations: Insights From Persons Declining Services}},
journal = {American Journal of Hospice and Palliative Medicine®},
year = {2025},
doi = {10.1177/10499091251368798},
pmid = {40831363},
url = {https://doi.org/10.1177/10499091251368798}
}
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