Perceptions of Palliative Care: Demographics and Health Status Among the General Population in Florida and the United States

Abstract

Background Palliative care (PC) helps maintain quality of life for seriously ill patients, yet, many Americans lack knowledge of PC. Aim To explore the relationships between knowledge of PC of individuals living in north-central Florida and throughout the United States. Design This cross-sectional survey with three sampling approaches, one was a community-engaged sample and two were panel respondent samples. Respondents and setting: Respondents of the Florida sample (n1 = 329) and the community-engaged sample (n2 = 100), were representative of the 23 Florida county general population. Respondents of the national sample (n = 1800) were adult members of a panel owned by a cloud-based survey platform. Results Young adults compared with adults (OR 1.62, 95% CI 1.14-2.28, P .007), middle-adults (OR 2.47, 95% CI 1.58-3.92, P < .001) and older-adults (OR 3.75, 95% CI 2.50-5.67, P < .001) were less likely to agree that the goal of PC is to help friends and family cope with a patient’s illness, and that the goal of PC is to manage pain and other physical symptoms compared with adults (OR 1.67, 95% CI 1.20-2.30, P .002) middle-adults (OR 2.58, 95% CI 1.71-3.95, P < .001) and older-adults (OR 7.19, 95% CI 4.68-11.2, P < .001). Participants with greater rural identity (OR 1.39, 95% CI 1.31-1.48, P < .001) were more likely to agree that accepting PC means giving up. Conclusions Increased knowledge of PC might be influenced through targeting educational interventions and educating the general population through social media use.

The General Public and Young Adults’ Knowledge and Perception of Palliative Care: A Systematic Review

“…Other factors that influenced knowledge of palliative care were female gender and older age. It was primarily the age group of people aged 45 to 64 that showed more knowledge compared with younger age groups [31,37,46,47,[55][56][57][58][59][60][61]. In summary, there is a lack of nuanced knowledge within the general population [32,33,[38][39][40][41].…”

“…Regarding palliative care, there is still an association with pure end-of-life care and with hospice care [56,[67][68][69][70][71][72][73]. The general population believes that the main aspect of palliative care is analgesia for severe pain, which is seen as particularly important for cancer patients and the elderly [32,37,39,43,57]. The general public perceives palliative care as caring for people who have no wish for treatment and no hope for continued life [57].…”

“…The general population believes that the main aspect of palliative care is analgesia for severe pain, which is seen as particularly important for cancer patients and the elderly [32,37,39,43,57]. The general public perceives palliative care as caring for people who have no wish for treatment and no hope for continued life [57]. Thus, palliative care is associated with reduced medical options and inadequate care [74].…”

“…More than half of the respondents who were able to develop a concept of palliative care for themselves felt that this concept was not clear and should be refined [80]. They were not aware of the holistic approach of palliative care and, compared with older populations, were more likely to think that palliative care does not address the care of relatives and friends [57]. Knowledge of palliative care in this age group is strongly influenced by whether relatives have already had contact with palliative care structures [24,50].…”

“…Besides personal contact with palliative care structures influencing knowledge and perceptions, most respondents in this age group received information on palliative care via the Internet; only 14% received it from books and only 8% from healthcare workers [80]. Mass media makes up 12% of the information sources, and information is increasingly obtained through social media [24,57,80].…”