Exploring the Relationship Between Palliative Care Knowledge, Health Concerns, and Education Among Seriously Ill Older Adults and Their Family Caregivers Using Survey and Interview Data: A Novel Approach

Background Palliative care in community settings can support seriously ill individuals to reduce symptoms and maintain quality of life. However, many individuals decline palliative care, even when they have health concerns. Differences in understanding how palliative care can help manage serious illness may contribute to declining. Objective This study explores the relationship between individuals’ understanding of palliative care, their health concerns, and education levels (a proxy for health literacy). Methods We use survey responses from a validated instrument assessing palliative care knowledge and information from semi-structured interviews for 21 seriously ill individuals (n = 3) and family caregivers (n = 18) who were eligible for community-based palliative care services and declined. We explore the relationship between respondents’ education, understanding of palliative care, and their concerns about their or their loved one’s health. Results Among participants, twelve had a bachelor’s degree or more; nine had some college or less. Six participants with some college or less expressed concerned about stress from serious illness. Of these, half (n = 3) did not understand palliative care could help. Conversely, five participants with a bachelor’s degree concerned about stress understood palliative care could help. Seven participants with some college or less expressed concerned about medication side effects; four did not understand palliative care could help. Conversely, three participants with a bachelor’s degree concerned about medication knew that palliative care could help. Conclusion Assessing health concerns and explaining how palliative care can address those concerns may reduce barriers to accepting palliative care, particularly among individuals with lower levels of education.