Patients with critical congenital heart disease are exposed to significant lifetime morbidity and mortality. Prenatal diagnosis can provide opportunities for anticipatory co-management of patients between palliative subspecialists and the cardiac care team. The benefits of palliative care include support for longitudinal decision-making and avoidance of interventions not consistent with family goals. Effectively counseling families requires an up-to-date understanding of outcomes and knowledge of provider biases. Patient-proxy reported quality of life (QOL) is highly variable in this population and healthcare providers need to be aware of limitations in their own subjective assessment of QOL.
Keywords: Critical Congenital Heart Disease; Palliative Care.
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