Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample

Abstract

Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early interest in, communication about, and integration of palliative care following subsequent illness diagnosis. We explored knowledge and beliefs about palliative care among the general public using nationally-representative data collected in 2018 as part of the cross-sectional Health Information National Trends Survey. Only individuals who had heard of palliative care ( n = 1,162, M age = 51.8, 64% female) were queried on knowledge and beliefs. We examined whether self-assessed level of awareness of palliative care (i.e., knowing a little vs. enough to explain it) was associated with the relative likelihood of having accurate/positive beliefs, inaccurate/negative beliefs, or responding “don’t know” to questions about palliative care. Respondents who indicated knowing a lot about palliative care had more accurate versus inaccurate knowledge than those who knew a little on only two of six items and more positive attitudes on only one of three items. In particular, respondents with greater awareness were equally likely to report that palliative care is the same as hospice and requires stopping other treatments, and equally likely to believe that palliative care means giving up and to associate palliative care with death. Those with higher awareness were less likely than those with lower awareness to respond “don’t know,” but greater awareness was not necessarily associated with having accurate or positive beliefs about palliative care as opposed to inaccurate or negative beliefs. Thus, even members of the general public who perceived themselves to know a lot about palliative care were often no less likely to report inaccurate knowledge or negative beliefs (versus accurate and positive, respectively). Findings suggest a need to improve awareness and attitudes about palliative care.

Perceptions and Attitudes towards the Concept and Approach of Palliative Care among Caregiver's of Patients on End-of-Life Care: A Cross-sectional Survey

“…[21,26] A study done on the general population in the US, found misperceptions and negative attitudes towards palliative care even though palliative care is more widely available there. [27] The PC approach stresses that the diagnosis of an incurable disease does not mean that nothing more can be done for the patient, on the contrary, a great deal can still be done to decrease and control physical and psychological symptoms, social issues and spiritual suffering of the patient. [2] It works in tandem with the 'patient centered approach' that is based on the principle that the patient should be given every opportunity to be involved in all aspects of care starting from complete information about the incurable condition to decision making about treatment options, unless the patient forgoes this right or defers it to a family member.…”

“…[33] Younger care givers were aware of this, probably because this group was more likely to have greater exposure to electronic media and other sources of information, even if they had been less likely to have had any personal experience of caring for a relative suffering from an incurable disease. [27] In contrast, the oldest age group also had a good understanding of this concept and the obvious explanation was their greater experience and therefore first-hand learning regarding this aspect of life, because by this stage in their lives they would have been more likely to have observed and/or been involved in the care of a family member or a friend suffering from an incurable or progressive condition or disease. All age groups believed that an essential aspect of PC was fulfilling the needs of patients suffering from incurable diseases.…”

“…Better knowledge and awareness in younger individuals has been noted in a study from the US also. [27] That there was less variation in correct perceptions about these components across gender is understandable as both have equal opportunity to care for a dying relative, regardless of age and relationship with patient. However, males had a better understanding of the focus of palliative care whereas females had more correct understanding about where PC can be provided.…”

“…Children had significantly more information about PC compared to the patient or a spouse as a care giver, again comparable internationally. [27] This is predictable in that younger care giver's have increased access to information technology like the internet and social media along with the education and skills to use it. This is probably because, although affected emotionally, children take on more responsibility in the practical and medical aspects of caring for their parents as patients, are more involved in discussions and management aspects with the medical team, and therefore actively seek information to enhance and improve the care of their affected parent, sparing the other parent of this difficult task.…”

Revisiting Early Palliative Care for Patients With Hematologic Malignancies and Bone Marrow Transplant: Why the Delay?

“…Evidence has shown that around 50-70% of adults in the US and other countries have never heard of PC, and even if they did, their knowledge about the specialty needed to be corrected [17]. One possible contributing factor to this misconception is that PC is a relatively new specialty.…”