Palliative and End-of-Life Care in Pediatric Cardiology: State of the Science and Future Directions

May 2020

Although incredible advancements have been made in the treatment of pediatric congenital and acquired heart disease over the past few decades, high rates of morbidity and mortality remain for this growing population of young people. Patients and families face complex decisions, acute and chronic symptoms, and prognostic uncertainty. Likely due to a long-time focus on “fixing” pediatric heart disease via surgical and technological interventions, in addition to the unpredictable course of heart disease, little attention has been paid to the palliative and end-of-life care needs of this at-risk population. Although clinical and research interest in the palliative and end-of-life care needs of pediatric cardiology populations has increased in recent years, many scientific questions and clinical problems remain. Through this accelerator workshop, led by Drs. Elizabeth Blume and Melissa Cousino, multidisciplinary experts across a variety of fields will come together to address the following: 1) What are the next steps to advance the science of palliative and end-of-life care in pediatric cardiology? and 2) How do we translate and disseminate widely the science of palliative and end-of-life care to improve symptom burden, support decision making and promote family-centered care and patient-reported outcomes. A summary of the proceedings with recommendations and clear next steps for research and clinical practice will result from this meeting. This workshop will energize, direct, and catapult future larger-scale, multi-site investigations aimed at improving palliative care for pediatric cardiology populations and their families.