Advance care planning for adolescents and young adults with congenital heart disease: the adult patient perspective.

Introduction: Although the importance of advance care planning (ACP) for individuals with adult congenital heart disease (ACHD) has been established, there is no consensus regarding the optimal age to initiate ACP discussions. We asked ACHD patients their opinions about the timing of the first ACP discussion.

Materials/methods: Adult patients seen in an outpatient ACHD clinic from April to August 2018 completed a self-administered questionnaire that evaluated opinions regarding the content and timing of ACP discussions, end-of-life communication preferences, and anticipated emotional responses to ACP discussions.

Results: Ninety-five patients participated. Median age was 34.8 years (Q1 - Q3: 28.4 - 47.1 years), 53% (n = 50) were female, and 91% (n = 86) had great or moderate disease complexity. Although 75% (n/N = 69/92) thought ACP was important, only 37% (n/N = 35/94) had completed advance directives. Most (79%, n/N = 72/91) preferred ACP conversations early, either before getting sick (44%, n = 40/91) or when first diagnosed with a life-threatening illness (35%, n = 32/91). Responses varied regarding the appropriate age for first ACP conversations: 28% (n/N = 25/88) chose options ≤ 15 years, 23% (n/N = 20/88) 16-17 years, 32% (n/N = 28/88) 18-20 years, and 17% (n/N = 15/88) ≥ 21 years old.

Discussion: ACHD patients value ACP discussions and think they should occur early in the disease course, before patients face a life-threatening disease complication, yet most think these conversations should wait until later adolescent or young adult years. ACP readiness should be assessed to determine the optimal timing of ACP discussions.