Helping the Dying ChildPractical Approaches for Nonphysicians

There is nothing more difficult for hospital staff than working with a child who is dying. In childhood cancer and other chronic and debilitating diseases, the child has often struggled through periods of remission and relapse and endured intense medical treatment complete with nausea, vomiting and physical changes before reaching a terminal care period. Many of the behaviors of the dying child and his or her family are repetitions of responses which have been learned during the course of the illness. Caregivers are thus faced not only with the challenge of providing excellent physical care but also with the need to understand the child and those who love him. This understanding must encompass knowledge of the child and his family, cultural and religious influences, the history of the treatment process, the dying child's developmental staging and the nature of the adaptation of both the child and family. This chapter will briefly examine these areas, discuss the behavior of the dying child and focus both on the impact of this behavior on us and on ways we can help the child. A brief section on home versus hospital care is included and the chapter closes with some issues to contemplate. It is important to stress that although this chapter focusses on the child with terminal cancer, there are many parallels which apply to children dying of heart disease, cystic fibrosis and other chronic diseases.