This chapter has proposed a range of research efforts to strengthen the very limited base of knowledge now available to guide those providing, organizing, financing, and monitoring palliative, end-of-life, and bereavement care for children and families. It has recommended strategies to promote relevant research in federally funded pediatric centers, networks, and similar structures. The intent is to increase the numbers of children and families involved in studies, encourage the development and use of common research methods, and increase the credibility and acceptance of the research findings.
The research directions proposed here focus on children who have conditions that are certain or likely to prove fatal, but investigation of some of the suggested research questions may involve participation by children who survive and their families. In some cases, such participation will reflect the unpredictability of certain life-threatening conditions and the requirements of prospective research designs. In other cases, it will reflect a focus on questions that affect the well being of children and families facing a life-threatening problem, whether or not that problem actually ends in death. In either case, when it is appropriate, including a larger group of children usually has methodological advantages.
Much of the research proposed here thus should provide knowledge that will inform and improve the care of children who survive as well as those who do not—and likewise will help every family that suffers with a seriously ill or injured child. Indeed, all of the recommendations in this report, if implemented, should help create a care system that all children and families can trust to provide capable, compassionate, and reliable care when they are in need.