• Jonathan Ludmir, Jill M Steiner, Hong-Nei Wong, Amy Kloosterboer, Jason Leong, Rebecca A Aslakson, and AAHPM Research Committee Writing Group.
• Division of Pulmonary and Critical Care Medicine, Stanford University Medical Center, Stanford, California, USA. Electronic address: Jludmir@gmail.com.
• J Pain Symptom Manage. 2019 Nov 1; 58 (5): 891-898.

ContextLittle is known about advance care planning (ACP) and palliative care needs among adults with congenital heart disease (ACHD).ObjectivesThe objective of this study was to identify and synthesize studies concerning palliative care among ACHD patients.MethodsWe searched five electronic databases (PubMed, Embase, SCOPUS, Web of Science, and CINAHL) using the keywords palliative care and congenital heart disease. Inclusion criteria were adults (age > 18 years) with congenital heart disease and publications in English through March 3, 2019.ResultsOur search yielded 2872 studies, and after removal of duplicates, we screened 2319 abstracts and identified seven for inclusion. Study findings were grouped into three domains: ACP, symptomatology, and end-of-life care. Among the five cross-sectional studies, only 1%-28% of ACHD patients recalled participating in ACP discussions with their doctors but 69%-78% reported a strong interest and desire to participate in ACP. In one study, 46% (n = 67) of patients had elevated anxiety symptoms (Hospital Anxiety and Depression Scale [HADS-A] ≥ 8) and 11% (n = 15) had elevated depressive symptoms (HADS-A ≥ 8). ACHD patients who had a documented goals of care conversation before cardiac decompensation had a lower incidence of resuscitation and aggressive treatments at end of life (12% [n = 3] vs. 100% [n = 12], P < 0.001).ConclusionWhile few ACHD patients complete advance directives, our findings support that many ACHD patients recognize the value of initiating end-of-life and goals of care conversations early on in the course of illness. Future studies investigating communication and implementation strategies of ACP as well as the symptom experience of patients with ACHD are needed.Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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