Supportive and palliative care for adults dying from congenital heart defect

Adult survivors with congenital heart disease (CHD) are a novel group of adults with chronic disease. Due to the nature of their surgical repair, the majority is not cured. This review focuses on changing demographics and mortality of adults with CHD, available knowledge and data on end-of-life (EOL) and palliative care in this patient group and outlines needs for future clinical practice and research.

Recent findings underscore that survival to adulthood has become the rule for the majority of patients born with CHD. Many remain at increased risk of premature death from their disease. Chronic circulatory failure has been identified as one of the leading causes of death and, thus, patients may benefit from incorporation of palliative care principles in their management. Recent studies show that this practice has not yet been widely adopted. Nonetheless a survey of adult outpatients has shown that many patients prefer to be involved in EOL decisions early in the course of their disease.

More research is needed to learn how we can best implement principles of palliative care in the growing population of adult survivors with CHD. This includes improved communication about EOL issues and a more comprehensive approach for symptom control.