Toward Optimal End-of-Life Care in the Pediatric Intensive Care Units (PICU)

Working in the pediatric intensive care units (PICUs) of six geographically and demographically diverse children´s hospitals, this study will examine end-of-life care through medical records and interviews with key 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 study will 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. The project will develop 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; and methodological papers that are responsive to current calls for the development of new tools and strategies for handling challenges in end-of-life care research.