Pediatric Cardiothoracic Surgeons and Palliative Care: A National Survey Study (S851)

Abstract

1.Outline pediatric cardiothoracic surgeons’ understanding and use of pediatric palliative care.2.Describe the barriers perceived by pediatric cardiothoracic surgeons to palliative care consultation. Among children with heart disease who die in the hospital, the majority occur within the first year of life in an intensive care setting. Discrepancies in understanding of prognosis and perceptions of suffering between parents and physicians caring for children with heart disease have been identified. While pediatric cardiology and palliative care (PC) provider attitudes towards PC have been described, no studies have assessed the perspectives of pediatric cardiothoracic surgeons (CTS). •Evaluate pediatric CTS understanding and use of PC.•Describe barriers perceived by pediatric CTS to PC consultation. A survey was distributed electronically to pediatric CTS in the United States. Subjects were excluded if they did not have a pediatric component to their practice. The survey consisted of 22 primarily closed-ended questions with multiple choice answers. Of the 220 CTS who were mailed the survey, 36 opened the survey and 5 did not meet inclusion criteria (n=31). Median years of practice was 23.5 and 87.1% were male. Almost all (90%) reported that they had experience consulting PC. While 68% felt PC consultation was initiated at the appropriate time, 29% felt it occurred too late. When asked the appropriate timing for PC consultation in patients with hypoplastic left heart syndrome, 45% selected “at time of prenatal diagnosis” and 30% selected “when surgical and transcatheter options have been exhausted.” Common barriers to PC involvement included the perception of “giving up” (40%) and concern for undermining parental hope (36%). While a majority of pediatric CTS are familiar with PC, there is variation in perception of appropriate timing of consultation and significant barriers to consultation still exist.