Measuring hospice care: the National Hospice and Palliative Care Organization National Hospice Data Set

Hospice has seen rapid growth in recent years, but there is a lack of consistency among hospices when it comes to compliance with standards of care. Consequently, hospices vary in performance and in services they provide. With state hospice organizations, the NHPCO developed a National Data Set (NDS) intended to understand demographics, practices, and outcomes; illustrate industry effectiveness; facilitate communication of industry legislative needs; and to support agency performance and improvement. Our paper describes development of the NDS and data that are being collected, and summarizes key findings from the 2000, 2001, and 2002 NDS. The data collection process, which began in 1999, has evolved substantially over a 4-year period to the point that we believe the 2002 NDS represents a well-designed core that will receive only minor modifications annually. This database will be invaluable for comparative audit, clinical practice and managing services because only that which is measured can be improved.