Medical Mistrust Among Black Patients with Serious Illness: A Mixed Methods Study

Abstract

Abstract Background Medical mistrust among Black patients has been used to explain the existence of well-documented racial inequities at the end of life that negatively impact this group. However, there are few studies that describe patient perspectives around the impact of racism and discriminatory experiences on mistrust within the context of serious illness. Objective To better characterize experiences of racism and discrimination among patients with serious illness and its association with medical mistrust. Participants Seventy-two Black participants with serious illness hospitalized at an academic county hospital. Approach This is a convergent mixed methods study using data from participant-completed surveys and existing semi-structured interviews eliciting participants’ perspectives around their experiences with medical racism, communication, and decision-making. Main Measures The experience of medical racism and its association with Group-Based Medical Mistrust (GBMM) scale scores, a validated measure of medical mistrust. Key Results Of the 72 Black participants, 35% participated in interviews. Participants were mostly men who had significant socioeconomic disadvantage, including low levels of wealth, income, and educational attainment. There were reported high levels of race-based mistrust in the overall GBMM scale score (mean [SD], 36.6 [9.9]), as well as high scores within the suspicion (14.2 [5.0]), group disparities in healthcare (9.9 [2.8]), and lack of support (9.1 [2.7]) subscales. Three qualitative themes aligned with the GBMM subscales. Participants expressed skepticism of healthcare workers (HCWs) and modern medicine, recounted personal experiences of discrimination in the medical setting, and were frustrated with poor communication from HCWs. Conclusions This study found high levels of mistrust among Black patients with serious illness. Suspicion of HCWs, disparities in healthcare by race, and a lack of support from HCWs were overarching themes that influenced medical mistrust. Critical, race-conscious approaches are needed to create strategies and frameworks to improve the trustworthiness of healthcare institutions and workers. Graphical abstract