What can five high cost patients teach us about healthcare spending?

The highest cost patients account for a disproportionately large share of American healthcare costs and are increasingly the focus of research and policy efforts to stem the rapid growth of these costs. These patients tend to be medically complex and frail, but we know little about how such characteristics influence healthcare spending from the perspectives of the patients and their caregivers. Therefore, we examined five of the highest cost patients at an academic medical center in a case series. We interviewed the patients, their family members, and their clinicians and analyzed their claims data and medical charts to explore how patient and health system characteristics influenced their health costs. We found that their complex medical issues, physical disability/frailty, and mental illness/substance use seemed to be linked with increased costs, while their socioeconomic status, social network, activation, and trust in clinicians and the health system appeared to increase or decrease costs depending on context. In these patients' narratives, trust seemed to modify the interaction between patient activation and cost. Our observations raise questions about whether factors mediating costs in high-cost patients may be more heterogenous than previously described and if patient trust and activation may be important, potentially modifiable drivers of these costs. Our case series illustrates the challenges of unilateral policies to address high cost patients and the need for targeted approaches.