Medical Student University of Virginia School of Medicine Charlottesville, Virginia, United States
Background: Congenital diaphragmatic hernia (CDH) is a developmental defect of the fetal diaphragm with significant mortality and morbidity that allows abdominal contents to herniate into the thoracic cavity. For patients with severe CDH, fetal endoscopic tracheal occlusion (FETO) can ameliorate the degree of pulmonary hypoplasia and subsequent pulmonary hypertension, potentially obviating the need for extracorporeal membrane oxygenation (ECMO). Currently, the effect of prenatal intervention on medical decision-making in the neonatal period is unknown. Objective: To determine the effect, if any, of a patient’s FETO status on providers’ decision-making and tendency to recommend withdrawal of life-sustaining measures (WLSM). We hypothesize that providers participating in intensive and surgical care for CDH patients post-FETO will have a higher threshold to recommend WLSM compared to patients who did not undergo FETO. Furthermore, we anticipate a lower threshold to recommend WLSM in infants born with right-sided CDH, regardless of FETO status, when compared to left-sided CDH. Design/Methods: We created four representative CDH cases with similar prognoses and risks of mortality paired with laterality—two patients who underwent FETO, and two who were expectantly managed. All patients required ECMO. Survey respondents will be solicited from the Congenital Diaphragmatic Hernia Study Group provider listserv, including neonatologists and pediatric surgeons. We are seeking IRB review, for which we expect exemption. Response data will be collected over a period of 2 months and then analyzed. For each case, respondents will be asked whether they would 1) recommend WLSM, 2) attempt to override a parental request for WLSM, and 3) whether they would perform a trial of resuscitation in a case of ECMO failure. Data will be analyzed by initially comparing the affirmative response rate for all 3 scenarios in each of the 4 cases by FETO status and defect laterality. Subset analyses will be conducted to determine any discrepancy in thresholds to recommend WLSM between provider specialty.
