Lack of Awareness and Common Misconceptions About Palliative Care Among Adults: Insights from a National Survey

Abstract

BACKGROUND: Despite recent growth in palliative care programs palliative care remains underutilized. Studies suggest that patients and providers commonly associate palliative care with end of life, often leading to misconceptions and late referrals. OBJECTIVE: To characterize self-reported palliative care knowledge and misconceptions about palliative care among US adults and demographic, health, and social r o l e f a c t o r s a s s o c i a t e d w i t h k n o w l e d g e a n d misconceptions.DESIGN: We conducted secondary data analysis of nationally representative, self-reported data from the 2018 Health Information National Trends Survey (HINTS) 5, Cycle 2. We examined associations between knowledge and misconceptions about palliative care together with demographics, health care access, health status, and social roles. PARTICIPANTS: 3504 US adults. 2594 included in the first analysis after omitting missing cases; 683 who reported knowing about palliative care were included in the second analysis. MAIN MEASURES: Palliative care knowledge was selfreported in response to: "How would you describe your level of knowledge about palliative care?" Level of misconceptions was based on a series of factual and attitudinal statements about palliative care. KEY RESULTS: Among US adults, 28.8% report knowing about palliative care, but only 12.6% report knowing what palliative care is and hold no misconceptions. Those most likely to report knowing about palliative care are female, college-educated, higher income, have a primary health care provider, or are a caregiver. Among those who report knowing about palliative care, misconceptions were common: 44.4% automatically think of death, 38.0% equate palliative care with hospice, 17.8% believe you must stop other treatments, and 15.9% see palliative care as giving up. CONCLUSIONS: US adults who have some knowledge of palliative care are most likely to confuse it with hospice but are less likely to see it as requiring forgoing treatment or as giving up. Primary care clinicians should be encouraged to communicate about palliative care with patients.

Knowledge of Palliative Care in Ecuador

“…Similar to research with the general population in another context such as the USA [ 28 , 29 ], this study shows that knowledge about PC in Ecuador is generally low, which may lead to under-utilization and missed opportunities to improve the quality of care for people who may benefit from it. The results also highlight some specific areas where people show more misconceptions, for example, explicitly differentiate PC from pain management, that PC can be given together with curative treatments and from the onset of the disease, that it can be provided by personnel with basic PC training (depending on the level of complexity), and that PC is are not provided only in specialized health institutions.…”

Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults

“…Our data echoes the 2018 Health Information National Trends Survey (Cycle 2) that shows 74% of non-Hispanic Black adults in the United States report not knowing about palliative care, and those who have some knowledge of palliative care are most likely to confuse it with hospice care. 14 Indeed, our data revealed that compared to hospice care and advance directives, palliative care was the most unknown type of care among both Hispanics and non-Hispanic Blacks, indicating that 3 out of 4 never heard about palliative care. We also documented significant racial gaps regarding awareness of hospice care, indicating that 5%, 18%, and 34% of non-Hispanic Whites, Hispanics, and non-Hispanic Black participants, respectively, reported lack of awareness of hospice care.…”

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…57 The 2018 Health Information National Trends Survey (Cycle 2) shows that 3 out of 4 (74%) non-Hispanic Black adults in the United States report not knowing about palliative care, and those who have some knowledge of palliative care are most likely to confuse it with hospice care. 17 In addition, it has been documented that uninsured and minority patients are less likely to receive hospice care and are more likely to have a delay in transition to hospice care when compared to their insured Caucasian counterparts. 106 While a few researchers suggest that disparity in use of hospice care is due to patient preference, others suggest physician bias as a factor.…”

“…After searching almost fourthly-thousand citations, 284 articles were included in our study, of which 147 were manuscripts that directly addressed end-of-life and hospice care, palliative care, as well as advance care planning and directives that include non-Hispanic Blacks. 4 …”