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children, healthcare organizations, hospices, hospice care, young adults



  1. Lindley, Lisa RN, MS
  2. Mark, Barbara RN, PhD, FAAN
  3. Lee, Shoou-Yih Daniel PhD


For the past two decades, end-of-life organizations have served an increasing number of children and young adults and expanded services important to terminally ill youth, and yet we know little about these organizations. The purpose of this study was to describe the characteristics of end-of-life care organizations that admit children and young adults to hospice care. Using data from the 2007 National Hospice and Palliative Care Organization Survey, we conducted a descriptive analysis of operational, mission, market, and financial characteristics and explored a subanalysis by age group. Our analysis revealed that these organizations had similar profit status, ownership, and payor mix when compared with the hospice industry. However, they differed in agency type, referrals, organizational size, geographic location, team member caseload, and revenues. We also found important differences in organizations that provide hospice care by age groups (infants, toddlers, school-aged children, and adolescents/young adults) in geographic location, region, agency type, accreditation, and team member caseload. These findings have managerial and policy implications.