The Institute of Medicine (IOM), Washington commenced a study of care for children who die and their families in 2000, and issued a report in July 2002.
The IOM appointed a committee of experts to oversee the study. The committee held five meetings, including three public sessions. Committee members heard testimony from:
- Family support and advocacy organizations.
- Health care groups.
- Parents of children who had died or were facing life-threatening medical problems.
The project was part of the Robert Wood Johnson Foundation's (RWJF) national program Targeted End-of-Life Projects Initiative.
The IOM's report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, included the following findings:
- The death of a child has a devastating and enduring impact.
- Children with fatal or potentially fatal conditions and their families often fail to receive competent, compassionate and consistent care that meets their physical, emotional and spiritual needs.
- Current methods of organizing and financing palliative, end-of-life and bereavement care complicate the provision and coordination of services.
- Inadequate data and scientific knowledge impede efforts to deliver effective care, educate professionals to provide such care and design supportive public policies.
- Integrating effective palliative care from the time a child's life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die—and will help the families of all these children.
The report presented the recommendations of the study committee, including:
- Develop collaborative guidelines and protocols for pediatric palliative care as a basis for assigning responsibility and evaluating and improving performance.
- Develop regional support services for families and professionals in small communities without specialized palliative care.
- Include hospice care for children in public and private health plans, eliminate hospice coverage requirements for a prognosis of six months to live and reduce restrictions on palliative care benefits, including consultations and parent counseling.