Ethical issues in parental decision-making. An interview study of mothers of children with hypoplastic left heart syndrome

It is unclear how parents make life-and-death decisions on behalf of their children. To address this issue we interviewed 20 mothers whose children we re born with hypoplastic left heart syndrome (HLHS), 10 whose child survive d the operations and 10 mothers who chose comfort care. Semi-structured int erviews lasting from 1.5 to 3.5 h took place on median 4.6 (range 2 .5-6) y ears after birth. The mothers who chose comfort care had more years of educ ation (p = 0.03), reported a better childhood environment (p = 0.05) and ha d mon often been employed in the healthcare services. The two groups descri bed the information received in similar terms. The main motive for choosing surgery was that this was perceived to be the only acceptable choice. The motive for choosing non-treatment was to prevent the child from suffering. Lack of knowledge about long-term outcome, a state of shock and short time to deliberate limit the parents' possibilities for making autonomous choice s. Autonomous decisions may be neither possible nor desirable for all paren ts. The care perspective, which highlights the parents' preferences, resour ces and values, should represent ethical guidelines for care providers will ing to decide on behalf of the child.