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September 1, 2008

Healthcare Providers Must Offer Palliative Treatment to Parents of Neonates With Hypoplastic Left Heart Syndrome

Arch Pediatr Adolesc Med. 2008;162(9):844-848. doi:10.1001/archpediatrics.2008.3

Hypoplastic left heart syndrome (HLHS) affects approximately 1000 infants annually in the United States.1,2 Several treatment options exist, including the staged surgical approach,3 cardiac transplantation,4 banding of the pulmonary arteries,5 in utero balloon valvuloplasty,6 and other novel and experimental techniques aimed at prolonging life and minimizing sequelae.7 Alternatively, parents may believe that the burdens of these interventions outweigh the benefits and may decide that it is in their child's best interest to pursue care that minimizes suffering without prolonging life. Such management has previously been termed comfort care. However, for reasons that will be described, it should be more properly referred to as palliative treatment and I will therefore refer to it as such. However, whether palliative treatment should be offered remains hotly debated. Many physicians do not discuss this option with parents,8 and some argue that this option should never be offered and that all infants with HLHS should have treatment aimed at prolonging life.9

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