February 01, 2001
End-of-life conversation extends to care of children
Through the leadership of the Health Care Ethics Consortium of Georgia, the Center for Ethics in partnership with the Georgia Collaborative to Improve End of Life Care has focused its efforts on identifying obstacles to and opportunities for improving the care of dying adults. With the support of the John H. and Wilhelmina D. Harland Charitable Foundation, the Center for Ethics is extending this conversation to include children at the end of life.
Unlike national and statewide efforts addressing end-of-life care issues related to adults that have been extensive, activities related to dying children have been quite limited. This is mainly because the number of deaths in childhood is considerably smaller than in adults. Of the total U.S. deaths in 1998, only 2.3% of them occurred in children under 19 years. Despite the small number of deaths, the needs of children are unique and cannot be fully and appropriately addressed in the same manner as adults. For example, criteria for admission to hospice, developed using an adult model, are not responsive to the nature of the progress of children’s diseases and parents’ willingness and/or desire to try innovative therapies. Few projects nationally are addressing the specific needs of children and their families.
To address the unique needs of children the Center for Ethics has established a statewide advisory group of pediatric health care providers. This group includes various professionals including physicians, nurses, social workers, chaplains, psychologists, child life specialists, and health lawyers. They represent specialty areas where childhood death is likely to occur, such as neonatology, pediatric cardiology, pediatric oncology, pediatric AIDS, and pediatric critical care. Perhaps the most important members of the group are 2 parent representatives. As parents of children who have died, they are able to speak more intimately of the needs of these children and their families.
In October 2000, this group began a series of monthly meetings. The goals of this group are to identify current end-of-life successes with children, to discern where there may be barriers to optimal care, and to formulate recommendations for improvement in end of life care of children in the state of Georgia. From these recommendations future efforts for improving end of life care for children will be identified and proposals for projects and funding developed. As an initial outcome from this group, it is expected that a document outlining the work of the group will be available in the summer of 2001. Kathy Kinlaw serves as project director and Karen Trotochaud serves as research fellow for this program.
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