Abstract 12526: Understanding Palliative Care Preferences Among Adults With Congenital Heart Disease

BackgroundMaximizing quality of life and honoring care preferences are at the forefront of high-quality care for patients with adult congenital heart disease (ACHD). Palliative care (PC) and advance care planning (ACP) have accordingly gained recognition. Yet best methods for implementation are not well-defined. Prior studies indicate patients want information about prognosis, believe discussions about future care are important, and are willing to participate in such discussions. However, these discussions rarely occur prior to severe illness, and practices vary. This study explored, through qualitative methods, patients’ perspectives on how PC and ACP apply in ACHD.MethodsPatients with ACHD participated in semi-structured interviews (30-60 minutes), in person or by phone. Participants were chosen via purposive sampling to achieve diversity in heart lesion severity, sex, race, and education. We asked about prior experience with PC and ACP, reasons for or against, and ideal timing. Interviews were transcribed and analyzed using a grounded theory approach.ResultsWe interviewed 20 patients with ACHD (ages 21 to 63, mean 38 years), of whom 55% were female, 60% identified as White/Caucasian, and all had at least a high school education. Heart lesion severity was simple in 25%, moderate in 35%, complex in 40%. Less than half reported compromised heart-related quality of life, but 70% had structured their lives around limitations and planning ahead to accommodate them. Four major themes were identified1) participants had minimal knowledge of PC and equated it to hospice, dying, or giving up; 2) ACP was a conceptually important part of routine care, but best timing is individualized; 3) ACP “did not apply” because patients were young and not sick enough; 4) those who saw ACP as a priority had experienced death of a friend or family member.ConclusionsPatients with ACHD expressed a general appreciation for early, routine ACP, but many did not think it applied to them yet. They equated PC to hospice and were unaware of its other features. This reveals an opportunity for education about scope and utility of these services in order to improve whole-person care for these patients.