not fit the traditional hospice model and coverage rules. They may not fit because their course to death is unpredictable and could be lengthy or because they want to continue curative or life-prolonging treatments. Service under the home care umbrella may also be less painful emotionally for families. If formal referral to the affiliated hospice eventually occurs, care can usually be continued with minimal disruption of continuity in trusted relationships.
In 1983, only 4 of the 1,400 hospice programs in the United States reported that they offered any pediatric services (Armstrong-Daley and Zarbock, 2001). The number has undoubtedly grown, but the committee found no firm count or estimate of the number of hospices that routinely provide care to a sufficient number of children to support specialized staffing, training, and outreach efforts.
Of the 3,000-plus existing hospice programs in the United States, 450 reported in a recent survey that they were prepared to offer hospice services to children (ChIPPS, 2001). The survey results do not, however, make clear whether these hospices actually have much or any experience providing such care. Based on discussions with staff of the National Hospice and Palliative Care Organization (NHPCO) and others and on its members’ professional experience, the committee suspects that fewer than 100 hospices have active pediatric programs with trained personnel, protocols, policies, and outreach efforts. As discussed elsewhere in this report, the federal government’s Center for Medicare and Medicaid Services is funding demonstration projects to test programs that provide more comprehensive services than those covered by current Medicaid hospice benefits.
In the United States, the first program of home-based care for dying children originated in the mid-1970s in Minneapolis under the joint sponsorship of a university hospital, a children’s hospital, and a large multispecialty physician practice (Martinson, I., 1993). (The original program no longer exists.) The first U.S. hospice also dates to the mid-1970s. In 1979, Edmarc was established as a community-based home hospice serving children (Armstrong-Dailey and Zarbock, 2001). In 1983, the nonprofit Children’s Hospice International began to provide resources to support the development of hospice services specifically for children. In recent years, the national association of hospices (NHPCO) has also supported efforts to develop pediatric hospice programs through the Children’s International Project on Palliative/Hospice Services (ChIPPS, 2001).