Advance Care Planning and End-of-Life Management of Adult Patients With Congenital Heart Disease

2013 ◽  
Vol 4 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Adrienne H. Kovacs ◽  
Michael J. Landzberg ◽  
Sarah J. Goodlin
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Adult Patients ◽  
Care Planning ◽  
Life Management ◽  
Advance Care

scholarly journals Barriers and Facilitators of Palliative Care and Advance Care Planning in Adults With Congenital Heart Disease

2020 ◽  
Vol 135 ◽  
pp. 128-134
Author(s):  
Jill M. Steiner ◽  
Alysha Dhami ◽  
Crystal E. Brown ◽  
Karen K. Stout ◽  
J. Randall Curtis ◽  
...  
Keyword(s):  
Palliative Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Barriers And Facilitators ◽  
Care Planning ◽  
Advance Care

scholarly journals COMMUNICATION PREFERENCES FOR ADVANCE CARE PLANNING IN ADULTS WITH CONGENITAL HEART DISEASE

2015 ◽  
Vol 65 (10) ◽  
pp. A549 ◽  
Author(s):  
Lisa X. Deng ◽  
Lacey P. Gleason ◽  
Abigail May Khan ◽  
David Drajpuch ◽  
Stephanie Fuller ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Care Planning ◽  
Communication Preferences ◽  
Advance Care

Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority

2017 ◽  
Vol 231 ◽  
pp. 105-109 ◽  
Author(s):  
Lisa X. Deng ◽  
Lacey P. Gleason ◽  
Abigail M. Khan ◽  
David Drajpuch ◽  
Stephanie Fuller ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Care Planning ◽  
Advance Care

Facilitators of and Barriers to Advance Care Planning in Adult Congenital Heart Disease

2012 ◽  
Vol 8 (4) ◽  
pp. 281-288 ◽  
Author(s):  
Matthias Greutmann ◽  
Daniel Tobler ◽  
Jack M. Colman ◽  
Mehtap Greutmann-Yantiri ◽  
S. Lawrence Librach ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Care Planning ◽  
Adult Congenital ◽  
Advance Care

Knowledge of and Preference for Advance Care Planning by Adults With Congenital Heart Disease

2012 ◽  
Vol 109 (12) ◽  
pp. 1797-1800 ◽  
Author(s):  
Daniel Tobler ◽  
Matthias Greutmann ◽  
Jack M. Colman ◽  
Mehtap Greutmann-Yantiri ◽  
S. Lawrence Librach ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Care Planning ◽  
Advance Care

scholarly journals Perspectives on advance care planning and palliative care among adults with congenital heart disease

2018 ◽  
Vol 14 (3) ◽  
pp. 403-409 ◽  
Author(s):  
Jill M. Steiner ◽  
Karen Stout ◽  
Laurie Soine ◽  
James N. Kirkpatrick ◽  
J. Randall Curtis
Keyword(s):  
Palliative Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Care Planning ◽  
Advance Care

scholarly journals 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)

2020 ◽  
Vol 41 (43) ◽  
pp. 4200-4210 ◽  
Author(s):  
Markus Schwerzmann ◽  
Eva Goossens ◽  
Pastora Gallego ◽  
Adrienne H Kovacs ◽  
Philip Moons ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Advance Care Planning ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Position Paper ◽  
Care Planning ◽  
Provider Perspectives ◽  
Adult Congenital ◽  
Advance Care

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.

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