Experience With Advance Care Planning Discussions Among Pregnant Women With Congenital Heart Disease.

Abstract

Women with adult congenital heart disease (ACHD) have an increased risk of adverse events during pregnancy. Advance care planning may therefore be an appropriate component of prenatal care. The aim of this study was to describe the perspectives of women with ACHD surrounding advance care planning during pregnancy. We conducted a thematic analysis of 25 semi-structured interviews with women with ACHD who had been pregnant. Purposive sampling was used to gain diversity in ACHD lesion complexity, race, age at pregnancy, and marital status. Mean age at pregnancy was 29 years (range 15-41 years), and ACHD was classified as simple (24%), moderate (44%), or complex (32%). We identified three primary themes: 1) the role of advance care planning in being prepared and providing security for family; 2) reasons for avoiding advance care planning, including its lower priority among more pressing concerns and the impact it might have on their current psychological state; and 3) varied openness to advance care planning discussions during pregnancy. Advance care planning is not a routine part of prenatal care in ACHD, and its role in this population requires further assessment.