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.
Children with life-threatening medical conditions are often referred to specialized centers for treatment. Some need little follow-up care, but others require considerable attention after they return home. Especially in more rural areas, these children, their families, and the local health care professionals, community hospitals, and other organizations that serve them need additional support. This support may include proven Internet and interactive telemedicine applications as well as telephone consultations and written guidelines and care plans.
Recommendation: Children’s hospitals, hospices with established pediatric programs, and other institutions that care for children with fatal or potentially fatal medical conditions should work with professional societies, state agencies, and other organizations to develop regional information programs and other resources to assist clinicians and families in local and outlying communities and rural areas. These resources should include the following:
consultative services to advise a child’s primary physician or local hospice staff on all aspects of care for the child and the family from diagnosis through death and bereavement;
clinical, organizational, and other guides and information resources to help families to advocate for appropriate care for their children and themselves; and
professional education and other programs to support palliative, end-of-life, and bereavement care that is competent, continuous, and coordinated across settings, among providers, and over time (regardless of duration of illness).
Parents (or guardians or other designated adults) will, in most cases, have legal authority to make decisions about a child’s medical care. Nonetheless, excluding children and, particularly, adolescents from conversations about their diagnosis, prognosis, and treatment strategies can isolate these patients emotionally and prevent parents and clinicians from truly