P0541 - Family centered care for patients with congenital heart defects: enhancing the role of palliative care

Children with critical congenital heart defects (CHD) require multiple surgeries and spend substantial amounts of time hospitalized in the first year of life. Long hospital stays, complications, and slow recoveries disrupt family life and increase parental stress. Concurrently, parents make difficult decisions about their child’s care. Pediatric Palliative Care (PPC) teams can support families antenatally and postnatally, and help parents clarify goals of care, however, some cardiac providers hesitate to involve PPC in the care of these patients. The goal of this quality improvement project was to increase the percentage of patients with critical CHD who receive a PPC consult by 50% at one medium sized pediatric cardiac surgery program. This study occurred from November 2018 to November 2019. An IRB exemption was obtained. A team of stakeholders consisting of surgeons, cardiologists, palliative care providers, neonatal intensive care physicians, residents, advanced practice providers, and nurses used the IHI model for improvement to 1) clarify current use of PPC services by the Heart Care Program; 2) explore common causes of low utilization of PPC services using five whys methodology; 3) provide education to Heart Care Program providers regarding PPC scope of services; 4) clarify location/timing of ideal PPC consult; and 5) identify CHD subpopulation of patients for whom PPC team involvement was deemed appropriate by providers . Outcome measure was percentage of patients hospitalized for critical CHD who received a PPC consult analyzed using a run chart. Process measure was number of cases of critical CHD between consults analyzed using a Shewhart G-chart. During the baseline six months (May 2018-October 2019), an average of 1 PPC consult was placed per 11 infants and neonates hospitalized for cardiac surgery (n=42). During the intervention period (n=80), median percentage of infants with a consult trended upward (Figure 1), and the number of eligible patients between consults improved from 5.1 to 1 (Figure 2). Additionally, one parent of a prenatally diagnosed patient was seen antenatally by the PPC team. This initiative increased PPC involvement in the care of patients with critical CHD. Future work includes further assessment of percent of patients who receive PPC consults, development of educational materials regarding PPC for parents of children prenatally diagnosed with critical CHD, and assessment of parental response to PPC.