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performance through routine data collection. Other elements of this project include the development of quality indicators for family-centered pediatric palliative care and the creation of curriculum materials and learning strategies to improve practitioner competence.
As wider use of sonograms and other diagnostic technologies has expanded the number of families who receive a prenatal diagnosis of a lethal or potentially lethal congenital anomaly, several organizations have developed perinatal hospice programs for parents who choose to or have no option but to continue the pregnancy (Sumner, 2001). For example, in 1995, the Madigan Army Medical Center began a program of support for families from the time of diagnosis through fetal death, stillbirth, or infant death and into bereavement (Calhoun and Hoeldke, 2000; see also Sumner, 2001).
The American Academy of Pediatrics recently issued its first explicit policy statement and recommendations on palliative and end-of-life care for children (AAP, 2000g). The American Academy of Hospice and Palliative Medicine has designed a series of self-study modules for physicians who care for dying patients and their families that can be used in undergraduate and medical as well as continuing medical education (AAHPM, 2000). A new module will focus specifically on children. In 2001, the National Hospice and Palliative Care Organization began distributing a compendium of educational and practical resource materials on pediatric palliative care intended for clinicians and others in both hospices and hospitals (ChIPPS, 2001). A recent Institute of Medicine (IOM) report on palliative care for cancer included a chapter on children and families (IOM, 2001c). Several hospices and children’s hospitals have begun or are starting palliative care programs.
One recent initiative comes as the result of congressional action directing the Centers for Medicare and Medicaid Services (CMS; formerly the Health Care Financing Administration) to support several demonstration projects to help Medicaid programs, hospices, and other organizations in five specified states develop and evaluate a Program for All-Inclusive Care for Children and their Families (PACC). The program is administered by Children’s Hospice International (CHI, 2002; see also http://www.chionline.org). These projects focus on children living with life-threatening medical conditions and their families. The idea is to develop and test models of continuous, integrated, and comprehensive pediatric palliative and end-of-life care similar to the Program of All-Inclusive Care for Elders (PACE) program, which was pioneered for older adults by OnLok Senior Health Services in California. As explained in Chapter 7, waivers of certain federal or state Medicaid requirements for the projects will remove some of the financial and regulatory barriers to such comprehensive care.