Over the last decade, there has been a concerted effort to improve care at the end of life, but the vast majority of these efforts have focused on the care of adults. However, a landmark report, issued by the Institute of Medicine, has called for national attention to pediatric palliative care. In particular, the IOM has noted that """"""""systematic data are not available"""""""" and called for research, particularly """"""""descriptive data - epidemiological, clinical, organizational and financial - to guide the provision, funding and evaluation of palliative, end-of-life, and bereavement care for children and families (IOM, 2003, p. 17)."""""""" Most children in the United States who die do so in hospitals (Feudtner, 2002;IOM, 2003), and newly emerging data indicate that over 80% of those deaths occur within pediatric intensive care units (PICUs), (Watson et al., 2003). Therefore, this multi-institutional study will take place in PICUs in 6 geographically and demographically diverse children's hospitals. 50 consecutive deaths in the PICUs of these 6 institutions (n = 300) will be followed through medical record abstraction and telephone interviews conducted with the most important stakeholders - the child's parents, the child's primary nurse, the nurse who was present at the bedside at the child's death, the attending intensivist who directed the child's care, and a clinician besides the physicians and the nurses who provided psychosocial support to the family (e.g., social worker, psychologist, child life specialist or chaplain). The goal is to describe the nature and range of current practices, assess quality of care, develop the first research tool capable of measuring quality of dying and death in the PICU, and examine associations of structure and processes of care with both quality of end-of-life care and quality of dying and death, 2 constructs that have been inadequately distinguished in prior research (George, 2002). The project will yield new knowledge of 2 distinct types: (1) a series of papers on the organizational, epidemiological, and clinical characteristics of care as well as the quality of care and the quality of dying and death, based on aggregate data from all 6 institutions;(2) methodological papers that are responsive to current calls for the development of new tools and strategies for handling vexing challenges in end-of-life care research.
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