End-of-Life care and treatment preferences among adults with congenital heart disease

Abstract

Due to significant developments in cardiac surgery, pediatric cardiology, and medical technologies, individuals born with congenital heart disease (CHD) are now living longer than ever before. Approximately 85 % of infants born with CHD now survive to reach adulthood, which is in stark contrast to the much lower survival rates of only a few decades ago. Experts estimated that there were approximately 800,000 adults living with CHD in the United States in 2000. Despite notable medical advances resulting in increased life expectancy, the long-term prognosis for this population remains of concern. Adult patients with defects of moderate or great complexity remains at risk of premature death from progressive heart failure or arrhythmias and/or a prolonged period of progressive disease before death. For many patients, cardiac surgeries are considered palliative measures rather than curative ones because they do not modify the basic anatomic or physiologic disturbance. For these reasons, as a group, patients would likely benefit from advance care planning (ACP) and palliative or end-of-life (EOL) care similar to that which is recommended for other chronically ill patients, such as those with cancer or heart failure associated with acquired heart disease.