Seriously Ill Children - Medical Decision-making For Older Children

Under U.S. law, children under the age of eighteen cannot provide legally binding consent regarding their health care. Parents or guardians legally provide that consent, and, in most situations, physicians and the courts give parents wide latitude in the medical decisions they make for their children.

Religious Beliefs and Medical Treatment

When a parent's decisions are not in the best interests of the child, the state may intervene. Nonetheless, forty-six states exempt parents from child abuse and neglect laws if they rely on spiritual healing rather than seek medical treatment for their minor children. The states without these laws are Hawaii, Massachusetts, Nebraska, and North Carolina (Kenneth S. Hickey and Laurie Lyckholm, "Child Welfare versus Parental Autonomy: Medical Ethics, the Law, and Faith-Based Healing," Theoretical Medicine, vol. 25, no. 4, 2004). Confusing the issue, however, is the agreement of the courts that religious exemption laws are no defense against criminal neglect. The legal distinction between practicing one's religion and criminal conduct in the treatment of one's children remains unclear.

Adolescents

The United Nations defines adolescents as people between the ages of ten and nineteen. Early adolescence is from ten to fourteen years, while late adolescence is from fifteen to nineteen years.

More than three thousand U.S. adolescents die each year from chronic illnesses such as cancer, heart disease, AIDS, and metabolic disorders (David Freyer, "Care of the Dying Adolescent: Special Considerations," Pediatrics, vol. 113, no. 2, February 2004). While many laws concerning minors have changed, such as allowing minors to seek medical treatment for reproductive health and birth control services without parental consent, most states have no laws for end-of-life decisions by minors who are adolescents.

Freyer notes that although the law does not consider adolescents under the age of eighteen to be competent to make their own health care decisions, health care practitioners often do. A broad consensus has developed among pediatric health care practitioners, developmental psychologists, ethicists, and lawyers that by the age of fourteen years, terminally ill adolescents (unless they demonstrate otherwise) "have the functional competence to make binding medical decisions for themselves, including decision relating to the discontinuance of life-sustaining therapy and other end-of-life issues." According to Freyer, some experienced health care practitioners think that terminally ill children as young as ten years "often meet the criteria for having functional competence and should have substantial, if not decisive, input on major end-of-life care decisions, including the discontinuation of active therapy."