Excluding children from health care decisions causes unnecessary distress.  “Communicating with and including children in decisions according to their preferences, conveys respect, enhances and develops their decision-making capabilities and contributes to psycho-social well-being,” the researchers wrote. “Given that children’s participation improves the quality of care provided, it is an important investment and one that requires adults to move to a child-centered approach in how they relate to children.”

In some ways, medical decision making for children and adolescents reflects the broad and well-recognized issues that arise in any legal context involving children. Those issues include: What should be the scope of parental authority over their children? What autonomy (if any) should children have to make their own decisions? To what extent should the state (through its legislators or judges) be permitted to interfere with parental decision making? Although these issues are constantly debated, they are far from being resolved.

This ongoing debate and issues surrounding the circumstances of Parent’s rights to make decisions for their children’s health care is the central issue for my novel: Save the Child.

In 1995, the American Academy of Pediatrics published its recommendations for the role of children in health care decisionmaking. The AAP recommended that the child’s voice be given greater weight as the child matured. For children who lack decision making capacity, the AAP recommended that their parents should make decisions unless their decisions are abusive or neglectful. When children have developing decision making capacity, the physician should seek parental permission and the child’s assent. In many cases, the child’s dissent should be binding, or at minimum, the physician should seek third-party mediation for parent-child disagreement. Although the child who dissents to life-saving care can be overruled, attempts should be made to persuade the child to assent for “coercion in diagnosis or treatment is a last resort”.

Obviously the above decisions were ignored or overruled in the Daniel Hauser case in 2009 and the Parker Jensen case in 2003.

The argument for children’s rights in health care has been long in the making.  . . .  there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which to make decisions that will facilitate their child’s long-term autonomy, not only their present-day autonomy. Moreover, third-party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making.

by Margaret L. Turley RN

author of Save the Child

administrator of Writers Unite to Fight Cancer.