When Patients Say They Know About Palliative Care, How Much Do They Really Understand?

Abstract

Lack of knowledge or misconceptions about palliative care (PC) can serve as barriers to accessing PC for seriously ill patients. Although self-reported rates of PC knowledge have been increasing, little is known about how self-reports relate to actual PC knowledge. To determine the prevalence of PC knowledge and the portion of those reporting they are knowledgeable have actual PC knowledge of basic PC principals. We used the Health Information National Trends Survey 5, Cycle 2, a nationally representative data set to describe the prevalence of self-reported PC knowledge. We conducted chi-squared test to compare self-rated PC knowledge level with actual knowledge. Finally, we ran a logistic regression to examine if self-reported knowledge level, age, and cancer history were associated with actual PC knowledge. About 34% of participants self-reported having at least some knowledge of PC, and 41% of those reporting familiarities with PC were able to answer all three basic PC questions correctly. Rates of correct responses for cancer patients were similar (42%) to the general sample and older adults were lower (35%). Compared with those with less than a high school education, people with a bachelor's degree and post-baccalaureate degree had higher odds ratio (21.07 and 23.07, respectively) of actual understanding of PC. We found that self-reported PC knowledge may not reflect actual PC knowledge. Physicians should carefully explain PC when introducing it to patients. In addition, this PC information should be provided at a low literacy level to ensure widespread understanding of the service.