compared to the funding available for clinical research. Even when hospices and hospitals undertake data-intensive internal studies (e.g., for quality improvement projects), they often lack the resources and motivation to produce analyses that meet peer-review standards for publication and wider dissemination.

Researchers, clinicians, and policymakers have recognized shortfalls in clinical research involving palliative and end-of-life care for children and have taken steps to encourage and guide such research, some of which are described later in this chapter. The remainder of this chapter

  • briefly reviews initiatives to encourage pediatric research in general and in palliative and end-of-life care specifically;

  • describes directions for clinical, health services, and educational research to guide improvements in palliative, end-of-life, and bereavement care for children and their families;

  • summarizes the practical challenges of undertaking pediatric research; and

  • reviews ethical and legal questions raised by research involving children.

Lessons learned from the kinds of research recommended here should help inform and improve the care of children who survive as well as children who die. It should likewise help all families who experience a child’s serious or fatal medical problem.

INITIATIVES TO ENCOURAGE PEDIATRIC RESEARCH

General

Federal policymakers have taken steps to encourage certain kinds of pediatric research. In 1998, following directions from Congress in 1995, the National Institutes of Health (NIH) issued policies and guidelines for including children as research participants (NIH, 1998). Under the policy, children are to be included in all such research funded by the NIH unless their exclusion is justified on scientific or ethical grounds. Exclusion would, for example, be justified when a medical problem does not affect children. For some medical conditions, children’s developmental characteristics might suggest the need for a separate, child-only study.

Legislative conference language accompanying the legislation encouraged but did not require the NIH to establish pediatric research priorities (NIH, 1998). The organization has not developed an overall set of priorities, although some individual institutes have developed priorities for certain clinical problems or services including kidney disease (NIDDK, 2001),



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