Key result
A survey of 150 outpatients with adult congenital heart disease found that 69% were willing to participate in advance care planning and 91% to speak to a palliative care clinician.
Why the study?
Recognizing the importance of advance care planning and being willing to participate are distinct, and how and when to begin advance care planning and palliative care discussions in adult congenital heart disease remains ill-defined.
Are adults with congenital heart disease willing to participate in advance care planning and palliative care discussions?
Cross-Sectional (n=150)
Are adults with congenital heart disease willing to participate in advance care planning and palliative care discussions?
The majority of adults with congenital heart disease are willing to participate in advance care planning and prefer to have these discussions with their ACHD clinicians.
BACKGROUND: Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. 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 facilitators 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 palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.
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Steiner et al. (2018) conducted a cross-sectional in Adult congenital heart disease (ACHD) (n=150). Advance care planning and palliative care discussions was evaluated on Willingness to participate in advance care planning. A survey of 150 outpatients with adult congenital heart disease found that 69% were willing to participate in advance care planning and 91% to speak to a palliative care clinician.
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