Improving outpatient advance care planning for adults with congenital or pediatric heart disease followed in a pediatric heart failure and transplant clinic

OBJECTIVE: To improve outpatient advanced care planning (ACP) for adults with congenital/pediatric heart disease followed in a pediatric heart failure (HF) and transplant clinic through quality improvement (QI) methodology. DESIGN: A one-year QI project was completed. We conducted quarterly chart reviews and incorporated feedback from the providers to direct subsequent interventions. PATIENTS AND SETTING: Patients ≥18 years of age seen in the HF and Transplant Clinic for follow-up visit were included in analysis. INTERVENTIONS: Interventions focused on five main areas: identifying and training providers to have ACP discussions, standardizing the ACP discussion, standardizing ACP and advance directive (AD) documentation in the electronic medical record, preparing providers to have ACP conversations, and preparing patients to engage in ACP and AD completion. OUTCOME MEASURES: The outcome measure was percent of adults seen in the HF and Transplant Clinic per month with documented AD (goal 50%). The process measure was percent of adults seen in the HF and Transplant Clinic per month with a documented ACP discussion (goal 100%). RESULTS: At baseline, no patients had a documented ACP discussion or AD. Fifty-eight adults (mean age 20.4 ± 2.1 years) were seen from March 2016 to February 2017 for a total of 130 visits. In the final month of our study, 75% of adult encounters had a documented ACP discussion and 42% had a documented AD. CONCLUSIONS: The percentage of documented ADs in adults seen in the HF and Transplant Clinic at a quaternary children's hospital improved through a QI initiative. Over 50% of patients who were engaged in an ACP discussion completed an AD, suggesting this population is receptive to ACP and AD completion.