Associations Between Health Literacy and End-of-Life Care Intensity Among Medicare Beneficiaries

Abstract

Background: Despite well-documented disparities in end-of-life (EOL) care, little is known about whether patients with low health literacy (LHL) received aggressive EOL care. Objective: This study examined the association between health literacy (HL) and EOL care intensity among Medicare beneficiaries. Method: We conducted a retrospective analysis of Medicare fee-for-service decedents who died in July-December, 2011. ZIP-code-level HL scores were estimated from the 2010-2011 Health Literacy Data Map, where a score of 225 or lower was defined as LHL. Aggressive EOL care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last 6 months of life, in-hospital death, and any of above. Using hierarchical generalized linear models, we examined the association between HL and aggressive EOL care. Results: Of 649,556 decedents, the proportion of decedents who received any aggressive EOL care among those in LHL areas was 82.7%, compared to 72.7% in HHL areas. In multivariable analyses, decedents residing in LHL areas, compared to those in HHL areas, had 31% higher odds of aggressive EOL care (adjusted odds ratio [AOR] 1.31; 95% confidence interval [CI]:1.21-1.42), including higher odds of no hospice use (AOR 1.35; 95% CI: 1.27-1.44), repeated hospitalization (AOR 1.07; 95% CI: 1.01-1.14) and in-hospital death (AOR 1.21; 95% CI: 1.13-1.29). Conclusion: Medicare beneficiaries who resided in LHL areas were likely to receive aggressive EOL care. Tailored efforts to improve HL and facilitate patient-provider communications in LHL areas could reduce EOL care intensity.

End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland

“…20 Individuals' behaviours toward ACP often appear to be shaped by their health literacy, which has been shown to affect their understanding of health challenges, their communication with medical professionals and their ability to make informed medical decisions. 21 22 Specifically, prior research showed that limited health literacy is associated with suboptimal self-care behaviour for diabetes, 23 poor health-related knowledge of chronic diseases, 24 communication gaps between patients and healthcare providers when discussing EOL care, 25 misunderstandings about EOL treatment options, 26 an increased probability of undergoing aggressive EOL care, 27 lesser engagement in ACP 28 29 and fewer chances of having an AD. 30 Moreover, health literacy has emerged as a pivotal factor in determining ACP engagement.…”

Development and validation of a subjective end-of-life health literacy scale

“…End-of-life health literacy is likely to be distinct from general health literacy due to the particular skills needed to navigate specific challenges of end-of-life planning and decision-making, such as exceptionally high stakes (questions of life and death), increased levels of risk and uncertainty, major emotional challenges related to the family and social contexts of dying, and complex discussions with highly-specialized professionals, potentially in a context of deteriorating physical and/or mental capacities. Poor end-of-life health literacy can lead to fewer palliative care visits, lack of advance care planning and advance directive completion, worse health status, lower quality of life at the end of life, and higher rates of unnecessary hospitalizations [10][11][12]. Improving health literacy related to end-of-life decision-making can thus support patient engagement and empowerment to make their own decisions in the face of death and potentially result in improved outcomes related to death and dying [13,14].…”

Willingness to Discuss End-of-Life Care Wishes Among Rural Black/African American Residents of the Alabama Black Belt

“…Some of the SDH examined in the prior research are lack of health insurance (Elting et al, 2020), lower income (Tramontano et al, 2018), lower health literacy/education (Cross et al, 2021), and rural residency (Del Rosario et al, 2019). These factors resulted in poorer end-of-life outcomes, such as lower hospice enrollment (Elting et al, 2020), location of death different from patient preferences (Cross et al, 2021), and higher use of aggressive treatments (Luo et al, 2021). Regarding health literacy in particular, prior research found not only literacy on general health information/services but also literacy specific to end-of-life care, such as awareness or knowledge of hospice care, predicted attitudes toward the service and comfort with end-of-life discussion (Amjad et al, 2014; Cross et al, 2021).…”