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- Title
Recommendations for advance care planning in adults with congenital heart disease: a position paper from the ESC Working Group of Adult Congenital Heart Disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD)
- Authors
Schwerzmann, Markus; Goossens, Eva; Gallego, Pastora; Kovacs, Adrienne H; Moons, Philip; Swan, Lorna; Tobler, Daniel; Stoutz, Noémi de; Gabriel, Harald; Greutmann, Matthias; Roos-Hesselink, Jolien W; Sobanski, Piotr Z; Thomet, Corina
- Abstract
Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives. Open in new tab Download slide Open in new tab Download slide
- Subjects
CONGENITAL heart disease; NURSING; DISEASE progression; DEATH; COMMUNICATION
- Publication
European Heart Journal, 2020, Vol 41, Issue 43, p4200
- ISSN
0195-668X
- Publication type
Article
- DOI
10.1093/eurheartj/ehaa614