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Characterizing Hospice Services in the United States

Correspondence: Address correspondence to Dr. Maureen A. Smith, Department of Population Health Sciences, University of Wisconsin School of Medicine and Public Health, 505 WARF Building, 610 Walnut Street, Madison, WI 53726. E-mail: maureensmith{at}wisc.edu

Purpose: Although caregivers desire specific information about hospice programs, there is little descriptive information available. We characterized agencies that provide formal or informal hospice care in the United States according to four types of services considered important by caregivers: medications and treatments; rehabilitative care; emotional, social, and spiritual support; and practical support (e.g., continuous home care). Design and Methods: Data were from the nationally representative 2000 National Home and Hospice Care Survey. We categorized agencies into service mixes reflecting combinations of the four service types by using a grade-of-membership model to score each agency. Results: Of the 11,419 agencies represented in our data, slightly more than half (52%) reflected some mix of services from all four service types. The remaining agencies provided service mixes that reflected relatively few or no services from at least one of the four service types. Specifically, approximately 7% lacked (i.e., had relatively few or no) medications and treatment services, 6% lacked rehabilitative care, 26% lacked emotional/social/spiritual support, and about 10% lacked multiple services. When compared to agencies that reflected a mix of all four services, agencies that lacked multiple services could be distinguished by their lack of formal certification as either a hospice or home health agency. Implications: Few U.S. agencies that provide formal or informal hospice care incorporate a balanced mix of all types of services, but most agencies lack only one type of service. Categorization of agencies based on services that are relevant to caregivers may assist providers in describing hospice care.

Key Words: Hospices • Caregivers • End of life • Spirituality • Social support