OBJECTIVES:

Rural family caregivers (FCGs) in the United States may experience physical, emotional, and financial burdens. This randomized controlled trial compares a transitional palliative care intervention (TPC) to support FCGs for seriously ill care recipients (CRs) to an attention control condition. We evaluated of TPC’s effect on healthcare use and out-of-pocket spending.

METHODS:

TPC FCGs received counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months to collect self-reported healthcare utilization (e.g. outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g. deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRR) were estimated using negative binomial regressions with offset to account for censoring.

RESULTS:

The study included 282 FCG-CR dyads across 3 states. Days follow-up (95.5) and survey completion (3.6 surveys) were similar across arms. CR mortality was 48% by six months. TPC reduced nights in the hospital for CR (IRR = 0.746; 95% CI = 0.562 – 0.990) and increased emergency department visits for FCG (IRR = 3.579; 1.159 – 11.055). Across both groups, mean out-of-pocket spending for dyads was $770.61, with healthcare payments contributing $539.92 and travel expenses contributing $230.68. Total out-of-pocket spending was not significantly higher for TPC versus control; though TPC dyads reported greater total healthcare (IRR = 1.534; 1.211 – 1.943) and lodging (IRR = 3.412; 2.681 – 4.342) costs.

CONCLUSIONS:

This study contributes to evidence that palliative care interventions reduce unnecessary hospitalization for seriously ill patients. The TPC intervention may have increased trust and knowledge of health care systems, allowing rural FCGs to seek emergency care when they may not have otherwise. The financial burden on rural FCGs is substantial, and intervention design should consider impacts on out-of-pocket spending.