[Ethical dilemmas associated with hypoplastic left-heart syndrome]

This questionnaire-based study elucidates the attitudes of Norwegian paediatricians and child cardiologists towards the surgical treatment of hypoplastic left-heart syndrome. During the last five years, 29 out of 53 Norwegian children have received surgical treatment in the USA or Switzerland. To date, approximately 50% of the children have survived three operations. In the present study, which comprises 26 of the physicians who are most frequently confronted with these children, none expressed that they were opposed to surgical treatment. Five of the 26 physicians stated that surgery should be obligatory, while 15 felt that this decision should be taken by the child's parents. The majority of the physicians inform the parents of the uncertain long-term prognosis and the possible need for future heart transplantation. The majority of the physicians also stated that it is difficult to give unbiased information. A surprisingly high number of the physicians consider the media and other parents to have as great an influence on the parents' choice of treatment as the paediatricians themselves have. Few Norwegian physicians considered the expenses related to the treatment to be the most difficult ethical dilemma. The majority of the physicians felt that the children should be treated in Norway or in another Nordic country.