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 role factors associated with knowledge and 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 self-reported 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.

Keywords: misconceptions; palliative care; primary care.

Fig. 1

Misconceptions about palliative care (N = 3445). Source/Notes: Source: Health Information National Trends Survey (HINTS) 5, Cycle 2, 2018. All results account for survey weights.

Fig. 2

Knowledge and attitudes about palliative care, among people who report knowing about palliative care (N = 865). Source/Notes: Responses to question F5, Health Information National Trends Survey (HINTS) 5, Cycle 2, 2018. All results account for survey weights. Data on misconceptions about palliative care are only available for those who report knowing something about palliative care. The response “I don’t know” was omitted from this visualization.