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

Abstract

Context. 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.Objective. To determine the prevalence of PC knowledge and the portion of those reporting they are knowledgeable have actual PC knowledge of basic PC principals.Methods. 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.Results. 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.Conclusions. 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.

Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

“…[18][19][20] In a nationally representative survey, about 34% of respondents said they had some knowledge of palliative care and, among these, just 41% were able to answer 3 basic palliative care knowledge questions correctly. 18 Similarly, in a Canadian survey of patients with stage 5 chronic kidney disease, about 63% of respondents stated they were familiar with palliative care, however only 22.2% of these were able to correctly describe palliative care. 19 In these studies, the most common misconception was that palliative care equates to hospice.…”

Study to Assess the Effectiveness of Simulation Technique to Overcome Misperceptions of Undergraduate Nursing Students’ About Paediatric Palliative Care

“…There is strong evidence in the literature that unresolved misconceptions about palliative care create barriers to the provision of this type of care. [15,18] Therefore, it is of crucial importance to discuss and deal with it for a good palliative care provision. [15] Strategies addressing misperceptions surrounding PPC are needed to reduce barriers affecting the delivery of this type of care and improve its accessibility.…”

“…There is strong evidence in the literature that unresolved misconceptions about palliative care create barriers to the provision of this type of care. [ 15 , 18 ]…”

Verifying intervention fidelity procedures for a palliative home care intervention with pilot study results

“…Determining content and dosage during pre‐study design ensures EOLPC content and home care skills are targeted to address the specific population needs and to meet health literacy standards (National Academies Press, 2016; Zhu & Enguídanos, 2019). Specifically, in this study, the content used in each discussion session was summarized in handout materials that were written in the recommended 5th grade level for health information.…”