What do family caregivers know about palliative care? Results from a national survey

Abstract

Objective. Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care. Method. Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”). Result. More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn’t know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.” Significance of results. One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

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

“…[23] The finding that all of the respondents were literate and the majority of the study participants were at least graduates may have had a bearing on the levels of awareness and knowledge about PCA study in the US found the same association. [21] In this sample of care giver's, half of them were close relatives of the patient, like wife, husband, sister or brother divided almost equally, while the remaining were nurses, nursing attendants or distant relatives. This matches findings in international studies where close family members take on the role of care giver when a spouse, parent, or child or a relative falls ill. [24,25] In the Pakistani setting the care giver is often a relative and often considers the opportunity to be an honor and a privilege.…”

“…It is noteworthy that these numbers are comparable with a large study done in the US in 2019, because the same percentage of caregiver's (55%), had never heard of palliative care, whereas 19.2 % knew what palliative care was and believed they would be able to explain it to someone else. [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.…”

“…[4,13,18] 12 This compounds the stress and burden of the family members caring for the terminally ill patient or informal caregiver/s, who may lack training, experience or preparation for this challenging and emotionally draining task To ensure meaningful and successful uptake, potential care giver's, whether family members or professional, need to have knowledge and understanding of the benefits of this approach in the care of their patient. [4,5,17,19,20,21] The objectives of this study , therefore, were to determine the perceptions, knowledge and attitudes of care giver's of patients who had been diagnosed with incurable conditions about the concept and principles of PC. The findings will help to inform interventions to enhance knowledge and address misperceptions as palliative care becomes more widely available in the country.…”

“…Misperceptions are common in the public and caregivers and can adversely impact the uptake of this beneficial service even where it is available. [21] For purposes of clarity, the caregiver/s, were defined as a person/s who gives help and protection to someone such as a child, an old person, or someone who is sick.…”

End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers

“…Despite a clear role for palliative care throughout DLB and hospice care at the EOL, many participants voiced lack of knowledge regarding hospice and lack of education and assistance from their physicians. This may reflect a more general lack of public and caregiver knowledge regarding palliative care [31]. Lack of family and physician knowledge are known barriers to hospice care in dementia [20] and caregivers report difficulty accessing hospice for family members with dementia [32].…”