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)

Schwerzmann, Markus; Goossens, Eva; Gallego, Pastora; Kovacs, Adrienne H; Moons, Philip; Swan, Lorna; Tobler, Daniel; de Stoutz, Noémi; Gabriel, Harald; Greutmann, Matthias; Roos-Hesselink, Jolien W; Sobanski, Piotr Z; Thomet, Corina (2020). 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). European Heart Journal, 41(43), pp. 4200-4210. Oxford University Press 10.1093/eurheartj/ehaa614

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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.

Keywords: Adult congenital heart disease; Advance care planning.

Item Type:

Journal Article (Review Article)

Division/Institute:

04 Faculty of Medicine > Department of Cardiovascular Disorders (DHGE) > Clinic of Cardiology

UniBE Contributor:

Schwerzmann, Markus and Thomet, Corina

Subjects:

600 Technology > 610 Medicine & health

ISSN:

0195-668X

Publisher:

Oxford University Press

Language:

English

Submitter:

Markus Schwerzmann

Date Deposited:

29 Dec 2020 08:45

Last Modified:

29 Dec 2020 08:46

Publisher DOI:

10.1093/eurheartj/ehaa614

PubMed ID:

32862229

BORIS DOI:

10.48350/149095

URI:

https://boris.unibe.ch/id/eprint/149095

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