Ethics priorities in adult congenital heart disease

Abstract

The success of modern therapies in congenital heart disease has produced a large and growing population of adults with congenital heart disease as a chronic condition. Such success increasingly raises a host of ethical issues, from resource utilization to end of life decision-making. The importance of a multidisciplinary approach to the care of adult congenital heart disease (ACHD) patients has been emphasized for some time, but addressing the challenges in this population requires a broad range of ethical expertise as well. This paper is based on a conference entitled "Ethical and Policy Challenges in Pediatric and Adult Congenital Heart Disease" held in March of 2012. Herein, we present a compilation of the ethics priorities in ACHD discussed at the conference, including ethical aspects of clinical care, ethics research and policy development in the areas of providing clinical care for challenging ACHD patients, improving transitions from pediatric to adult healthcare systems, advance care planning, and addressing costs.