The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.

It is possible to have a reliable and valid measure of a clinical phenomenon but to score the measure in a way that inaccurately represents the clinical meaning of the measured phenomenon. The purpose of this article is to demonstrate the risk to research and clinical assessments caused by a discrepancy in the clinical meaning of scores obtained by total scale scoring and those obtained by individual item scoring. The clinical phenomenon that is used in this demonstration is symptom distress as measured by the Symptom Distress Scale (SDS). In this example, the discrepancy in meaning between total scale scores and the individual item scores of the SDS has potential clinical implications as more than 30% of participating adolescent patients at each of four time points spanning a 6-month time period would have been inaccurately assessed when the assessment was based on the total scale score.

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