Approaching End-of-Life Decisions in Adults with Congenital Heart Disease.

PURPOSE: Despite tremendous advances in medical and surgical care, some adults with congenital heart disease (ACHD) develop terminal conditions where therapy is limited. This paper reviews the important role of palliative care, advance care planning (ACP), and end-of-life (EOL) care in ACHD. RECENT FINDINGS: Recent studies suggest that ACP is infrequently utilized in ACHD. Patients generally express interest in learning more about EOL care, though few ACHD providers have received adequate training to confidently conduct these discussions. Most barriers to communication are largely addressable, and an organized approach to ACP that encourages active patient participation followed by clear documentation is more likely to be successful. Palliative care appears complementary to standard medical care and can be introduced at any stage of illness, with proven benefit in similar patient populations. ACP is an important part of the routine care for all ACHD. Patient preferences should be identified early and palliative methods incorporated whenever necessary.

Where Adults with Congenital Heart Disease Die: Insights from the CDC-WONDER Database.

The population of adults with congenital heart disease (ACHD) is rapidly increasing. There is limited understanding of location of death and associated disparities in these patients. From 2005-2018, a trend-level analysis was performed using death certificate data from the Centers for Disease Control and Prevention Wide-ranging Online Data for Epidemiologic Research Database, with individual-level mortality data obtained from National Center for Health Statistics. Places of death were classified as hospital, home, hospice facility, nursing home/long-term care and other. A total of 15,507 total deaths were identified in ACHD from 2005-2018 (54% Male, 84% White). ACHD patients were more likely to die in the hospital (64%) compared to general population (41%). Younger decedents (20-34) with ACHD were more likely to die in the hospital, while older decedents (≥65) were more likely to die at Hospice/Nursing facilities. Black and Hispanic patients with ACHD were more likely to die in the hospital compared to White and non-Hispanic patients. A significantly large proportion of ACHD deaths are observed in younger patients and occur in inpatient facilities. End-of-life planning among socially vulnerable populations should be prioritized.