Systemic Barriers in End-of-Life Care for Neuro-Emergencies: Temporal, Racial, and Disease-Specific Disparities Among ICH/SAH Decedents, 1999–2020
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Background Timely transition to hospice care is critical for reducing avoidable suffering in neuro-emergencies like intracerebral hemorrhage (ICH) and subarachnoid hemorrhage (SAH). However, registry-based research often overlooks structural discontinuities in outcome reporting and lacks rigorous examination of system-level barriers. This study aimed to unveil structural inequities—specifically the "weekend effect" and race-urbanicity interactions—concealed behind the overall growth in hospice utilization. Methods We conducted a retrospective population-based cohort study of US decedents using CDC WONDER data (1999–2020). Joinpoint regression was first employed to validate structural reporting breakpoints, establishing a comparable "mature period" (2005–2020) while excluding unstable early data. Mixed-effects negative binomial regression models with prespecified interaction terms and bootstrap resampling were applied to quantify the independent and interactive effects of timing, disease phenotype, and geo-racial factors. Results Among 344,211 decedents in the mature period, hospice utilization increased significantly but exhibited profound stratified disparities. First, utilization for SAH remained consistently half that of ICH. Second, a systemic "weekend effect" was identified, where weekend death was associated with a ~ 53–56% reduction in hospice utilization (aRR ~ 0.45) across both pathologies, highlighting administrative failure in off-hour referral pathways. Third, interaction models revealed a "double jeopardy" phenomenon: the benefits of urbanization were heavily racialized. While urban Non-Hispanic Whites had the highest utilization, urban Non-Hispanic Blacks had rates (0.37%) significantly lower than even rural Whites (0.53%). Conclusions The expansion of hospice for neuro-emergencies is not linearly homogeneous but shaped by early reporting instability and persistent system-level barriers. The institutional void during weekends and the racial capture of urban advantages constitute major impediments to equity. Physical resource density (urbanization) does not automatically translate into equitable health gains. Achieving true equity requires establishing 24/7 palliative assessment pathways and implementing targeted structural interventions to dismantle these rigidities.