Terminal care of the dying child. Psychosocial implications of care

Cancer and death have so often been synonymous in the minds of many. We who dedicate ourselves to the treatment of children realize that this is no longer true and work diligently to help the public see that indeed many children are cured of their malignancies. It is important to do this because the view that cancer is a terminal event is simply not true. However, how do we prevent the pendulum from swinging in the opposite direction? For it cannot be denied that care of the dying and bereaved is unavoidable in the professional life of health-care providers in pediatric oncology. This article is not meant to review physical care for the terminally ill child, although the importance of pain and symptom control will be addressed. Rather, the purpose is to identify issues that are central in the treatment of dying children and their families. This is born of a belief that the management of the terminal phase of illness has a dramatic effect on the psychosocial recovery of the family. Bereavement follow-up care of parents and siblings, an integral part of terminal care, will be discussed. The issue of caregiver bereavement will also be addressed. Specific attention is given to home care as an option for terminal care. Current practice, research, and problems will be presented followed by recommendations to improve care.