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Advance care planning and palliative care in ACHD: the healthcare providers’ perspective

Published online by Cambridge University Press:  14 February 2020

Jill M. Steiner*
Division of Cardiology, University of Washington, Seattle, WA, USA
Erwin N. Oechslin
Toronto Congenital Cardiac Centre for Adults at Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada
Gruschen Veldtman
Adult Congenital Heart Disease, Heart Centre, King Faisal Specialist Hospital and Research Centre, Riyadh, KSA
Craig S. Broberg
Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA
Karen Stout
Division of Cardiology, University of Washington, Seattle, WA, USA
James Kirkpatrick
Division of Cardiology, University of Washington, Seattle, WA, USA
Adrienne H. Kovacs
Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA
Author for correspondence: J. M. Steiner, MD, MS, Division of Cardiology, HSB AA522, 1959 NE Pacific St., Box 356422, Seattle, Washington98195, USA. Tel: +1 206 685 0526. E-mail:



Advance care planning and palliative care are gaining recognition as critical care components for adults with CHD, yet these often do not occur. Study objectives were to evaluate ACHD providers’ 1) comfort managing patients’ physical symptoms and psychosocial needs and 2) perspectives on the decision/timing of advance care planning initiation and palliative care referral.


Cross-sectional study of ACHD providers. Six hypothetical patients were described in case format, followed by questions regarding provider comfort managing symptoms, initiating advance care planning, and palliative care referral.


Fifty providers (72% physicians) completed surveys. Participants reported low levels of personal palliative care knowledge, without variation by gender, years in practice, or prior palliative care training. Providers appeared more comfortable managing physical symptoms and discussing prognosis than addressing psychosocial needs. Providers recognised advance directives as important, although the percentage who would initiate advance care planning ranged from 18 to 67% and referral to palliative care from 14 to 32%. Barriers and facilitators to discussing advance care planning with patients were identified. Over 20% indicated that advance care planning and end-of-life discussions are best initiated with the development of at least one life-threatening complication/hospitalisation.


Providers noted high value in advance directives yet were themselves less likely to initiate advance care planning or refer to palliative care. This raises the critical questions of when, how, and by whom discussion of these important matters should be initiated and how best to support ACHD providers in these endeavours.

Original Article
© The Author(s), 2020. Published by Cambridge University Press

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