Improving outpatient advance care planning for adults with
congenital or pediatric heart disease followed in a pediatric
heart failure and transplant clinic
Lindsay A. Edwards MD
Christine Bui MD
Antonio G. Cabrera MD
Jill Ann Jarrell MD, MPH
Texas Children’s Hospital, Lillie Frank
Abercrombie Section of Pediatric Cardiology,
Houston, Texas, USA
Department of Pediatrics, Baylor College of
Medicine, Houston, Texas, USA
Department of Medicine, Baylor College of
Medicine, Houston, Texas, USA
Section of Academic General Pediatrics,
Texas Children’s Hospital, Houston, Texas,
Texas Children’s Hospital, Section of
Palliative Care, Houston, Texas, USA
Jill Ann Jarrell, Baylor College of Medicine,
Texas Children’s Hospital, Address: 6651
Main St., Suite E.415-33, Houston, TX
Objective: To improve outpatient advanced care planning (ACP) for adults with congenital/pediat-
ric 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 incorpo-
rated 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 6 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.
advance care planning, advance directive, congenital heart disease, heart failure, heart transplanta-
tion, quality improvement
As outcomes of pediatric heart disease continue to improve, an increas-
ing proportion of children with chronic heart disease are reaching
adulthood. This complex patient population is at increased risk for hos-
pitalization and death.
In pediatrics, parents and the healthcare team
typically make decisions for patients, but as these patients become
adolescents and young adults, they should voice their own values,
2018 Wiley Periodicals, Inc. wileyonlinelibrary.com/journal/chd Congenital Heart Disease. 2018;13:362–368.
Received: 11 October 2017
Accepted: 26 December 2017