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Choices physicians would make if they were the parents of a child with hypoplastic left heart syndrome

      We surveyed pediatric subspecialists who are experts in the care of children with hypoplastic left heart syndrome (HLHS), and asked them what they would do if faced with either a prenatal or neonatal diagnosis of HLHS in their own child. Furthermore, we assessed what factors influenced the decisions physicians stated that they would make, particularly perceived outcomes of surgery and physicians’ personal characteristics. Under the doctrine of informed consent, physicians give parents information regarding various treatment options and likely outcomes. However, if physicians who were knowledgeable on the topic, placing themselves in the position of the parent of an affected child, did not regard outcomes as the primary factor in their decision-making, it may be more appropriate to use a different model of obtaining informed consent for treatment of HLHS, a model that gives more weight to personal values.
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