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)

Markus Schwerzmann, Eva Goossens, Pastora Gallego, Adrienne H. Kovacs, Philip Moons, Lorna Swan, Daniel Tobler, Noémi De Stoutz, Harald Gabriel, Matthias Greutmann, Jolien W. Roos-Hesselink, Piotr Z. Sobanski, Corina Thomet

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)4200-4210
Number of pages11
JournalEuropean heart journal
Volume41
Issue number43
DOIs
StatePublished - Nov 14 2020

Keywords

  • Adult congenital heart disease
  • Advance care planning

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

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