The National Palliative Care Registry: A Decade of Supporting Growth and Sustainability of Palliative Care Programs

Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry™ ("the Registry") and describe recent findings from its surveys on hospital palliative care. Description: Established in 2008, the Registry data elements align with National Consensus Project (NCP) guidelines related to palliative care program structures and operations. The Registry provides longitudinal and comparative data that palliative care programs can use to support programmatic growth. Results: As of 2018, >1000 hospitals and 120 community sites have submitted data on their palliative care programs to the Registry. Over the past decade, the percentage of hospital admissions seen by palliative care teams (penetration) has increased from 2.5% to 5.3%. Higher penetration is correlated with teaching hospital status, having a palliative care trigger, and hospital size (p < 0.05). Although overall staffing has expanded, only 42% of Registry programs include the recommended four key disciplines: physician, advanced practice or other registered nurse, social worker, and chaplain. Compliance with NCP guidelines on key structures and processes vary across adult and pediatric programs. Conclusions: The Registry allows palliative care programs to optimize core structures and processes and understand their performance relative to their peers.