Elucidating patient-perceived role in “decision-making” among African Americans receiving lung cancer care through a county safety-net system

We explored patient-perceived role in “decision-making” related to active treatment and palliation among african americans receiving lung cancer care through a county safety-net system. drawing from a cohort of over 100 african americans treated in a safety-net hospital, we invited a subsample of 13 patient-caregiver dyads to participate in a series of dyadic, ethnographic interviews conducted at the patients’ homes. over 40 h of transcripts were analyzed in an iterative process resulting in reported themes. findings from ethnographic interviews demonstrated that healthcare communication with physicians is difficult for patients. while caregivers and patients describe a deep engagement in lung cancer care, they expressed a concurrent lack of understanding of their prognosis and outcomes of treatment. dyads did not discuss their lung cancer experience in terms of decision-making; rather, most articulated their role as following physician guidance. distinct lack of understanding about disease course, severity, and prognosis constrain patient perception of the need for informed decision-making over the course of care. dyadic interviews detailing safety-net patient experiences of lung cancer care raise important questions about how clinicians, as well as researchers, conceptualize processes of informed decision-making in vulnerable populations. safety-net patients not perceive their role as involving informed decision-making and further lack understanding of disease course and individual prognosis. safety-net patient dyads expressed high involvement in care and a desire for clarity; clinicians should be prepared to clearly communicate disease stage and prognosis.