Perspectives on Advance Care Planning in Adult Congenital Heart Disease: An Australian Sample

Abstract

Introduction

Patients with adult congenital heart disease (ACHD) now survive well into adulthood though their overall long-term survival remains below the general population. Advance care planning (ACP) has been endorsed by clinical guidelines, yet it is infrequently discussed and/or implemented.

Methods

As part of an international multicentre APPROACH-IS II study, 184 consecutive ACHD patients completed a questionnaire regarding their perceptions on the future and ACP.

Results

There were 88 males and 96 females in the study. The mean age was 29.4±8.94 years. The mean score for future health concern was 5.83±2.55, (0=no concerns, 10=extreme concern). Concern regarding future health was associated with NYHA Class (p<0.001), the average score of concern increasing with increasing NYHA Class. Forty-five percent of participants were aware of processes around advance care directives and plans, but only 4% had documented their wishes. There was no association between documentation and concerns regarding future health, or NYHA class. Sixty-nine percent of patients agreed that ACP should occur when patients are well. However, only 51% of patients had discussed their future health with their clinicians. Only 8% and 24% of patients were uncomfortable discussing their future health and death respectively. No information was obtained about how comfortable the cardiologists were about discussing ACP.

Conclusions

There is limited understanding of ACP among ACHD patients. Although most patients accept the value of ACP early in the patient’s clinical course, few in this Australian sample documented their end-of-life care wishes. Further education of both ACHD patients and their attending clinicians toward initiating these sensitive discussions of ACP may lead to more patients documenting their wishes.