“Majority of the time, I know I’m right”: understanding the decisions behind persistently high ED utilization among patients with substance use disorders

Patients with persistently high emergency department (ED) utilization (10 + visits in two consecutive years) represent a unique and complex population. We sought to understand drivers of persistently high ED use among individuals with substance use disorders (SUD) to optimize care delivery and improve health for this population. This mixed-methods study examines healthcare utilization and decision-making among patients in an opioid treatment program with a co-located primary care clinic within one mile of the ED in a Mid-Atlantic urban academic health system. Quantitative data were extracted from health records to assess utilization, comorbidities, and health-related social needs. Semi-structured interviews were conducted with a subset of 12 patients and thematic analyses explored motivations for ED use. Among 454 identified patients, 19 met criteria for persistently high ED use with a mean of 23 ED visits and average $35,677 ED charges per patient. Cohort patients had multiple chronic conditions and unmet social needs: 63% had cardiovascular disease; 74% had hepatitis C; 84% had non-psychotic mental illness, and > 50% experienced financial and housing insecurity or social isolation. Qualitative analysis identified key factors influencing ED use, including perceived illness severity, convenience, interpersonal interactions with healthcare providers, the impact of SUD, and unmet social needs. Most patients preferred outpatient care for routine health management, yet described barriers to this care, including limited access and unfamiliarity with available services. Patients experienced stigma in hospital settings, yet they viewed the ED as the most logical option for their care needs. Patients with SUD and persistently high ED utilization often seek emergency care due to a perceived need for immediate access to complex interventions, reflecting similar motivations to those of the broader ED patient population. Despite primary care engagement, patients face intersecting medical, behavioral, mental health, and social challenges that interfere with managing complex chronic conditions and influence healthcare-seeking behaviors. Our findings can inform quality improvement efforts to strengthen care for similar populations, such as removing barriers to outpatient services and addressing SUD stigma. Policy and system-level interventions targeting structural determinants—such as healthcare models, payment structures, social isolation, and poverty—are needed to better support this population.