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

Abstract

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.

Palliative Care Opportunities Among Adults With Congenital Heart Disease—A Systematic Review

“…All five of the survey studies assessed ACHD patient and/or ACHD clinician beliefs concerning different aspects of ACP. In two studies, 1% to 29% of ACHD patients recalled participating in ACP, 9,10 though 50% of clinicians in one of the studies reported offering ACP. 9 While only 5%e21% of surveyed patients had completed an advance directive, 11,12 69%e78% reported a strong interest and desire for ACP and advance directive discussions.…”

ISHLT consensus statement for the selection and management of pediatric and congenital heart disease patients on ventricular assist devices Endorsed by the American Heart Association

“…Across pediatric illness and ACHD populations, a number of studies have shown that many young people believe completing an advance directive would be helpful. [254][255][256] Adolescents with HF report a preference for these conversations to be initiated by a member of the healthcare team. 253 Following assessment of patient and family preferences, participation of all patients in advance care planning should be considered.…”

Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion

“…The systematic review identified several studies that address potential obstacles to palliative care involvement, summarized as patient-related, physician-related or healthcarerelated (Figure 2). 13,26,27,29,31,32,34,36 Misconceptions by patients, families, and healthcare practitioners of the role of palliative care are common. It is often presented by professionals as equivalent to EOL care and, thus, synonymous with 'giving up', or being incompatible with active life-prolonging PAH treatments.…”