• defining bereavement support roles for hospital-based and out-of-hospital personnel, including emergency medical services providers, law enforcement officers, hospital pathologists, and staff in medical examiners’ offices; and

  • responding to the bereavement needs and stresses of professionals, including emergency services and law enforcement personnel, who assist dying children and their families.

Coordination and Continuity of Care

Parents repeatedly cite the frustrations they experienced in coordinating the care needed by a very ill child. Reducing the burdens of care coordination is a formidable challenge. This is especially true for children with complex, chronic problems that require inpatient, home, and community-based services from many different professionals and organizations that may be separated geographically, institutionally, and even culturally from each other. As described earlier in this chapter, interdisciplinary care teams, case managers, disease management programs, and medical homes are important but still incomplete foundations or strategies for care coordination and continuity. These strategies themselves have to be coordinated or linked within and across organizations and sites of care.

The committee recognizes that the development and institutional adoption of guidelines or protocols as recommended above is but one step toward changing practice and improving outcomes. Other steps include the assignment of institutional accountability for the implementation of protocols (including the identification of barriers to implementation), the development of programs to train personnel in the basis and use of the guidelines, and the creation of information systems to make adherence to the guidelines easier and assessment of their consequences—both expected and unexpected—routine.

Recommendation: Children’s hospitals, hospices, home health agencies, and other organizations that care for seriously ill or injured children should collaborate to assign specific responsibilities for implementing clinical and administrative protocols and procedures for palliative, end-of-life, and bereavement care. In addition to supporting competent clinical services, protocols should promote the coordination and continuity of care and the timely flow of information among caregivers and within and among care sites including hospitals, family homes, residential care facilities, and injury scenes.

An essential foundation for improved coordination of care—and improvements in the quality and efficiency of health care generally—is better



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