Open Access

ARTICLE

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

Jill M. Steiner¹, Karen Stout¹, Laurie Soine¹, James N. Kirkpatrick¹, J. Randall Curtis²

1 Division of Cardiology, School of Medicine, University of Washington, Seattle, Washington
2 Cambia Palliative Care Center of Excellence, University of Washington, Seattle, Washington

* Corresponding Author: Jill M. Steiner, Division of Cardiology, University of Washington, 1959 NE Pacific St., HSB AA522, Box 356422, Seattle, WA 98196. Email:

Congenital Heart Disease 2019, 14(3), 403-409. https://doi.org/10.1111/chd.12735

Abstract

Background: Patients with adult congenital heart disease (ACHD) report that ad‐ vance care planning (ACP) is important, and that they want information about prog‐ nosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill‐defined.
Methods: We conducted a cross‐sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facili‐ tators to these discussions.
Results: The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.
Conclusion: Patients with ACHD report being willing to participate in ACP and pallia‐ tive care discussions. Patients prefer to have these discussions with their ACHD clini‐ cians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.

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Keywords

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