Physician and Parent Perceptions of End-of-Life Experience in Children with Advanced Heart Disease

Abstract

Purpose To describe and identify associations between parent and physician perceptions regarding end-of-life (EOL) care and suffering in children with advanced heart disease (AHD). Methods and Materials The Survey about Caring for Children with Heart Disease at EOL was developed and mailed to parents of children with AHD who experienced in-hospital deaths between 2007-2009. Patients’ cardiologists were also surveyed. Spearman correlation coefficients and Fisher’s exact tests were performed. Results There were 31 parent/physician survey pairs. Patient age at death was a median of 6.5 mo (4 d–20yrs); 84% had congenital heart disease. At EOL, 90% of patients were intubated and 30% were on mechanical circulatory support. Length of last hospital stay was 26 d (1-193 d). Cardiologists expected long-term survival at diagnosis in 36% of patients. Nearly 50% of parents and physicians felt that the child had suffered ‘a great deal,’ ‘a lot,’ or ‘somewhat’ at EOL with no association in perceptions between them. While half of parents felt they “sometimes” received conflicting information from different members of the care team, only 25% of physicians felt that parents perceived care team conflict. In 12 of 28 cases, physicians reported that the parents were prepared for the way the child died while the parents reported feeling unprepared. The majority of parents (93%) felt that quality of care during the last month of the child’s life was ‘excellent’ or ‘very good’ compared to only 78% of physicians. Conclusions Both parents and physicians perceive suffering at EOL in children who die of AHD. Although parents feel quality of care is excellent, physicians overestimate the degree of parent preparedness for their child’s death. There is no association between parent and physician perceptions of the EOL experience. Prospective studies are necessary to improve EOL care for children with AHD.