Advance Care Planning and Advance Directives

Abstract

Care of the adult patient with congenital heart disease (CHD) has evolved greatly over the last few decades, affording patients the ability to live longer. Despite these advances, many patients with CHD remain at considerable risk of premature death, and many endure their last years of life with significant symptoms. Planning for advance care is important for all patients with congenital heart disease. For some with complex lesions and advanced disease, it allows for appropriate care based on a patient’s wishes and beliefs; for others with simple lesions and normal life expectancy, it provides necessary patient education and anxiety relief. As part of advance care planning, patients should consider filling out an advance directive when appropriate, and providers should consider early referrals to palliative care and hospice.