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

Purpose: 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. Methods: 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. Results: 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 may constrain patient perception of the need for informed decision-making over the course of care. Conclusions: 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. Implications for Cancer Survivors: Safety-net patients may not perceive their role as involving informed decision-making and further may 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.