Advance care planning in adult congenital heart disease: Unique approaches for a unique population

Recommendations for advance care planning in adults with congenital heart disease were recently published, reinforcing the role of advance care planning as an essential component of patient-centered care. In significant ways, the adult congenital heart disease population differs from the “typical” elderly population about whom much of the palliative care literature is written. Herein we report the results of a multidisciplinary conference focusing on the unique nature of this population and their needs for advance care planning. First, we describe the characteristics of adults with congenital heart disease that set them apart, including childhood illness and early interactions with the healthcare system. Then we give tailored recommendations to providers for how to effectively elicit their patients’ goals and values, in order to counsel them about the future. •Advance care planning is an essential component of patient-centered care.•Adults with congenital heart disease ​differ from the “typical” patients ​who participate in ​advance care planning.•Adults with congenital heart disease require special adaptations for advance care planning to be maximally effective.