End-of-life decision-making and satisfaction with care: Parental perspectives

OBJECTIVES: To evaluate parents' perceptions of the process by which decisions are made to limit or withdraw life support from critically ill children, and to evaluate parents' perceptions of their child's death in the pediatric intensive care unit (ICU) and their satisfaction with the care provided. DESIGN: Survey. SETTING: University teaching hospital. PARTICIPANTS: Seventy-eight parents who experienced the death of a child in the ICU between January 1, 1995 and June 30, 1998. INTERVENTIONS: Structured telephone interviews. MEASUREMENTS AND MAIN RESULTS: Forty-one parents recalled discussing the limitation or withdrawal of life support from their child with a physician. Of these, 31 (76%) felt they had just the right amount of authority to make decisions for their child, 8 (20%) felt they had too little, and 1 (2%) felt they had too much. Those satisfied with their decision-making authority had more trust in their physician than those who were dissatisfied (5 vs. 1, p <.001 by Mann-Whitney U test, where 1 = no trust and 5 = complete trust). Factors identified by parents as being extremely important in the decision-making process included physician recommendations, diagnosis, expected neurologic recovery, and degree of pain and suffering. A total of 51 parents were with their child at the time of death. Although none regretted being present, 17 parents who were not present later wished they had been (p <.001, Fisher's exact test). The quality of care provided to parents by the ICU staff was graded (1 = poor; 5 = excellent). Eleven parents (14%) scored quality of care <or=2. These parents more often had a child die of an acute illness (6/11 vs. 8/67; p <.01), more often felt uninformed about their child's condition (9/11 vs. 19/67; p <.001), were less likely to understand the cause of death (4/11 vs. 51/67; p <.01) and less likely to have contact with hospital staff at home after the child's death (6/11 vs. 56/66; p <.05). These parents were also less likely to perceive staff as sympathetic (4/11 vs. 57/67; p <.001) or kind (5/11 vs. 65/67; p <.001). CONCLUSIONS: Recommendations of physicians, nature of illness and expected neurologic recovery are important to parents making end-of-life decisions for their children. The establishment of trust is crucial in guiding parents through the decision-making process. Parental presence at the time of a child's death, the provision of adequate information, and a sympathetic environment may facilitate a healthy grief response.