@Article{chd.12735,
AUTHOR = {Jill M. Steiner, Karen Stout, Laurie Soine, James N. Kirkpatrick, J. Randall Curtis},
TITLE = {Perspectives on advance care planning and palliative care among adults with congenital heart disease},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {14},
YEAR = {2019},
NUMBER = {3},
PAGES = {403--409},
URL = {http://www.techscience.com/schd/v14n3/38782},
ISSN = {3071-1738},
ABSTRACT = {<b>Background:</b> 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.<br/>
<b>Methods:</b> 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.<br/>
<b>Results:</b> 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.<br/>
<b>Conclusion:</b> 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.},
DOI = {10.1111/chd.12735}
}