Measuring the Quality of Dying and Death in the Pediatric Intensive Care Setting: The Clinician PICU-QODD

Context. In the pediatric intensive care setting, an accurate measure of the dying and death experience holds promise for illuminating how critical care nurses, physicians, and allied psychosocial staff can better manage end-of-life care for the benefit of children and their families, as well as the caregivers. Objectives. The aim was to assess the reliability and validity of a clinician measure of the quality of dying and death (Pediatric Intensive Care UnitdQuality of Dying and Death 20 [PICU-QODD-20]) in the pediatric intensive care setting. Methods. In a retrospective cohort study, five types of clinicians (primary nurse, bedside nurse, attending physician, and the psychosocial clinician and critical care fellow most involved in the case) were asked to complete a survey for each of the 94 children who died over a 12 month period in the pediatric intensive care units of two children’s hospitals in the northeast U.S. Analyses were conducted within type of clinician. Results. In total, 300 surveys were completed by 159 clinicians. Standard item analyses and substantive review led to the selection of 20 items for inclusion in the PICU-QODD-20. Cronbach alpha for the PICU-QODD-20 ranged from 0.891 for bedside nurses to 0.959 for attending physicians. For each type of clinician, the PICU-QODD-20 was significantly correlated with the quality of end-of-life care and with meeting the family’s needs. In addition, when patient/family or team barriers were encountered, the PICU-QODD-20 score tended to be significantly lower than for cases in which the barrier was not encountered. Conclusion. The PICU-QODD-20 shows promise as a valid and reliable measure of the quality of dying and death in pediatric intensive care. J Pain Symptom