Health literacy and advance care planning among adults in New York City

Advance care planning (ACP) is a process for determining future medical decisions. ACP requires individuals to communicate their wishes. There is limited research measuring rates of ACP by levels of health literacy. The Transtheoretical Model (TTM) is a framework for evaluating the process of individuals’ movement through behavioral change stages and provides a framework to understand ACP engagement. To determine whether health literacy, and/or the number and type of health conditions, are associated with ACP engagement among individuals aged 40 years and older who live in New York City (NYC). We conducted a cross-sectional survey of adults in New York City aged 40 and older. Survey respondents self-reported their health status, need for help reading medical information, and level of ACP engagement. We used multivariate analyses to study the associations between comorbidities, disease burden, health literacy, and ACP engagement. We interpreted the findings using TTM constructs, such as behavior stage progression and processes of change. Approximately 55% of the participants had comorbid conditions, and one-third (29.7%) had inadequate health literacy. Between 26.9% and 30.8% of these participants have not considered any ACP variables if they become very sick. Individuals who needed assistance with medical information and with pulmonary or metabolic conditions and had significantly higher ACP engagement scores compared to those without these health conditions (CI: 0.29, 0.84; p < 0.001 and CI: 0.13, 0.67; p = 0.003). Survey respondents with four or more chronic conditions had significantly higher engagement in ACP whether they had high ( p = 0.004) or low ( p = 0.006) health literacy. Our research found that lower rates of health literacy did not preclude engagement in ACP. In alignment with the TTM, ACP engagement increased with comorbidity burden and the presence of specific health conditions, reflecting progression across stages of readiness. Our findings highlight that ACP in individuals with four or more comorbidities may be reactive, with less opportunity for the required self-efficacy and engagement. Future interventions to promote ACP should start early and promote equitable and meaningful engagement in individuals with all levels of health literacy and health conditions.