When Billy Best, 16, ran away from his Massachusetts home, he raised questions about far more than his whereabouts. Because he fled chemotherapy treatments, his situation raises complex ethical and practical issues about a teen-ager's role in determining medical care.
The key question is "how do you empower teen-agers to care for their health," says Dr. Arthur Elster, the American Medical Association's director of adolescent health.
Teens with chronic or life-threatening illness often feel powerless when doctors and parents tell them they must undergo a certain treatment. They're no longer little children who can be spoon-fed medicine, yet most have not acquired the judgment that comes with adulthood.
"Teen-agers say they feel that 'people are doing things to me and I've been left out of the loop,' and they refuse to take medication," Dr. Elster says. "It's a feeling of not being in control, and their refusal or noncompliance is an angry statement in some ways."
Adolescents have a well-established right of consent to receive medical services, but do they have the same right as adults to refuse treatment? Laws and court interpretation give sparse guidance.
But Billy and another teen-ager, Benito Agrelo, have recently forced families, physicians and ethicists to take a closer look at a teen-ager's right to refuse medical care.
"We don't have a clear notion of informed refusal, not in ethics or in law," says Dr. Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania. The picture is further clouded, he said, because "it's often hard to tell what's rebelliousness and what's saying no to a treatment that the teen-ager has had experience with, understands and really wants to refuse."
Doctors diagnosed Hodgkin's disease, a curable form of lymphatic cancer, in Billy Best last summer. But he became tired and discouraged by chemotherapy, his parents said.
Benito Agrelo, a 15-year-old in Florida who had undergone two liver transplants, stopped taking anti-rejection medication, citing its painful side effects. In June, the Florida Department of Health and Rehabilitative Services forcibly removed him from his parents' house and had him admitted to a Miami hospital.
But Judge Arthur Birken of Broward County Circuit Court ruled that the boy had the right to refuse treatment. Benito died Aug. 20 at his parents' home in Coral Springs.
Since the 1930s, courts have allowed minors to give informed consent for health services. In most states, if a doctor determines that a teen-ager -- usually age 14 or older -- understands the treatment and its benefits, risks and alternatives, the teen-ager is considered a "mature minor" and is able to obtain medical service without parental approval.
Although the law has not clarified the teen-ager's right to refuse treatment, the mature minor concept is considered by some people to apply to refusal as well.
"Yes, I do think teen-agers have the right to refuse treatment," Dr. Caplan says, "and it makes some sense to determine teen-agers' competence in these cases. . . . But acceptance of their refusal doesn't mean you stop trying to persuade them to receive treatment."
The dilemma for many families and physicians is the fact that teen-age patients share the same concerns about physical appearance, peer acceptance and social life as other teen-agers.
When treatment may make them lose their hair or have a puffy face, or keep them from participating in typical teen-age activities, many teens push aside the long-term prospect of improved health for what they see as a short-term benefit -- relief from the side effects of medication.
Many doctors stress taking time to listen to the teen and explain details, consequences and options.