Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority

Background Adult congenital heart disease (ACHD) patients with moderate or great defect complexity are at risk for premature death. Although early engagement in advance care planning (ACP) is recommended, previous research suggests that it seldom occurs. Methods This study investigated ACHD patient preferences for ACP and factors that impact preferences. ACHD patients completed an ACP preferences questionnaire, the Hospital Anxiety and Depression Scale and a measure of attachment styles. Results Of 152 ACHD patients (median age 33 years, 50% female), 13% reported previous ACP discussions with providers and 21% had completed advance directives. On a 0–10 scale, the median rating for the importance of discussing ACP with providers was 7; 18 years was identified as the most appropriate age to initiate this dialogue. Higher ratings for the importance of discussing ACP with providers was observed in patients who were female (p = 0.03), had lower disease complexity (p = 0.03), and had elevated anxiety symptoms (p = 0.001); elevated anxiety remained significant in a multivariable model. Interest in receiving information about life expectancy (61% overall) was greater among patients with lower disease complexity (p = 0.04) and a history of ≥ 2 cardiac surgeries (p = 0.01); disease complexity remained significant in a multivariable model. Conclusions As a group, ACHD patients value the opportunity for ACP discussions and prefer earlier communication. Although some clinicians might avoid ACP discussions in patients who are generally more anxious or have less complex CHD, such avoidance does not appear to be warranted.