Researchers: Nearly 90% of Americans Do Not Understand Palliative Care

About 89% of people in the United States have inadequate knowledge of palliative care. One key determinant was health care utilization. The more regular health care services a patient receives, the more likely they are to have some understanding of palliative care, according to a study published in Cancer Epidemiology, Biomarkers & Prevention.

Among the 3,450 patients surveyed by researchers from the University of Oklahoma Health Sciences Center, those who have a regular source of medical care were 2.67 times more likely to have adequate knowledge of palliative care than people who do not, the study found. Cancer patients in particular were 51% more likely to be familiar with palliative care than those who have never been diagnosed with that disease.

“Despite the known benefits of palliative care and its endorsement by the American Society of Clinical Oncology and the National Comprehensive Cancer Network, we have not seen an increased uptake of palliative care by those who need it most,” said Motolani Ogunsanya, PhD, an assistant professor at The University of Oklahoma Health Sciences Center. “A common misconception is that palliative care is only for end-of-life care when, in fact, it can begin at any point in the disease course.”


About 50% of community-based palliative care providers are hospices, according to the Center to Advance Palliative Care. A rising number of hospices have been diversifying their services to engage patients further upstream and take advantage of emerging value-based payment models, with palliative care as one of the most common new business lines.

Public awareness is a major barrier to expanding the use of palliative care, which many people, including some clinicians, conflate with hospice.

Women were more likely to understand palliative care than men, according to the study, and married individuals were twice as likely to have adequate knowledge than people who are single. Those who had a college degree were more than 13-times more likely to know about palliative care compared with respondents without a high school degree.


Researchers analyzed data from the 2018 National Cancer Institute’s Health Information National Trends Survey. Respondents self-reported their knowledge of palliative care by selecting between: “I’ve never heard of it,” “I know a little bit about palliative care,” and “I know what palliative care is, and I could explain it to someone else.” The first two responses were grouped together as inadequate knowledge, and the final response was considered adequate knowledge.

“How someone perceives their own knowledge of palliative care may reveal more about their likelihood to pursue palliative care than a more objective measure,” Ogunsanya said. “If someone is not confident in their knowledge of palliative care, they may be less inclined to ask for it, regardless of how well they do understand it.”

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