Abstract

CONTEXT: Little is known about advance care planning (ACP) and palliative care needs among adults with congenital heart disease (ACHD).OBJECTIVES: To identify and synthesize studies concerning palliative care among ACHD patients.METHODS: We 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) with congenital heart disease and publications in English through March 3, 2019.RESULTS: Our search yielded 2872 studies, and after removal of duplicates, we screened 2319 abstracts and identified 7 for inclusion. Study findings were grouped into three domains: ACP, symptomatology, and End-of-Life care. Among the 5 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 prior to 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).CONCLUSION: While 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.

View details for DOI 10.1016/j.jpainsymman.2019.07.025

View details for PubMedID 31404639