Small hearts - grand matters. The ethics of neonatal treatment with unknown long-term outcome : the case of hypoplastic left heart syndrone

Ethical decisions about medical care of infants is based on the by proxy evaluation of the infants' best interests. Since parents and physicians may have different points of reference, conflicts may arise during the decision-making process. The decision about the infant's well being becomes even more complex when high risk treatment with an uncertain long-term outcome is considered. Surgical palliation of hypoplastic left heart syndrome (HLHS) is an example of such a treatment. I use this example in my discussion on the relevant ethical issues and possible roots of conflicts between the decision-makers.I argue that as long as long-term survival rates are variable, and the survivors' quality of life remains uncertain, palliative surgery for HLHS should not be obligatory. Rather, the parents should be informed not only about the existing treatments but also about the non-treatment option, and what each option may imply for the infant, parents and the family