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.

Key Findings
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.

Recommendations
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.

Funding
RWJF provided $50,000 toward the study from February 2001 to June 2003.