When minors refuse medical treatment

Case of a Massachusetts teenager may serve to clarify murky lawconcerning the rights of young people.

Alexis Demos, at 17, is old enough to drive a car and get into R-rated movies alone. She believes she's also old enough to make decisions about her medical care - including refusing to undergo a procedure doctors said she may need.

But by law, Alexis is still a minor, and the doctors helping her to recover from a recent snowboarding accident say they have a duty to protect the life of a child - even if it means giving her a blood transfusion against her will.

Perhaps not surprisingly, the impasse ended up in court, where a Massachusetts judge decided the doctors could perform the transfusion. Alexis and her family, all Jehovah's Witnesses, have appealed - and the outcome may serve to clarify a murky area of law concerning the rights of minors to refuse medical treatment.

Beyond the legal ramifications, Alexis' case raises anew some thorny questions: In fostering responsibility and independence in young people, when should adults let go of the right to impose their will? What factors should determine whether a teenager is capable of making important decisions?

"With adults, we don't want them treated paternalistically, but with kids, that's the responsibility of adults [collectively]," says Leonard Glantz at Boston University's School of Public Health. "There's a conflict between respecting their rights and respecting their well-being."

Most states recognize, to some degree, the rights of "mature minors" (those deemed capable of understanding the range of choices and consequences) to agree to treatment in areas such as reproductive health, mental illness, and drug addiction. Minors can also be "emancipated" if they are married or living independently from their parents.

While the legal right to refuse medical treatment is clearly established for adults, for minors like Alexis it's mostly unmapped territory. Young people have raised objections for a number of reasons, including religious beliefs and cultural beliefs of immigrant groups. Moreover, a few judges have ruled in favor of teenagers who wanted to stop treatment that was expected to cure them but that had painful side effects. A 16-year-old boy from Massachusetts sparked a discussion of young patients' rights a few years ago when he temporarily ran away to avoid continuing chemotherapy.

In recent years, medical organizations have encouraged a wider application of the "mature minor" concept. The American Academy of Pediatrics opposes religious exemptions to child-protection laws, but in 1997 it acknowledged "that many children, beginning in adolescence, can contribute to or make medical decisions, including those about life-sustaining treatment."

When minors are making such decisions, it's important "to look into the real family dynamics, without being intrusive," says Terry Perlin, an ethics consultant for hospitals and a professor at Miami University in Ohio. Much caution is required in a life-or-death case, he says. But "my default rule is to err on the side of enhancing the autonomy" of the young person.

Others, however, see it differently. While a patient's age, understanding, and experience with treatment should be considered, the need to preserve a life outweighs the value of a minor's self-determination, says Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania in Philadelphia.

ARGUING before an appeals panel in Boston last week, Alexis' lawyer, Richard Simons, asserted that age 18 is an arbitrary line and that the court should treat Alexis as a mature minor who has clearly expressed her religious convictions. Just weeks before the snowboarding mishap, for instance, she signed a card she carried with her stating her objection to blood transfusions.

"It is important to Alexis that her wishes be respected involving her fundamental rights to privacy and self-determination," Mr. Simons said in an interview.

"The hospital does not like battling with its patients," says Benjamin Smith, a lawyer for the Berkshire Medical Center in Pittsfield, Mass., where Alexis was receiving care. But in this case, doctors saw her injury as "a very fixable problem." In their view, Mr. Smith says, " 'best interests' means best medical interests."

For Jehovah's Witnesses, rejection of blood transfusions is rooted in biblical references to the sanctity of blood and the need to abstain from blood. Adherents do not avoid other medical practices or believe that cures can generally be accomplished through prayer, says James Pellechia, a spokes-man at the church's international headquarters in New York.

Blood transfusions came into use after World War II, and for years courts allowed hospitals to force them on Jehovah's Witnesses, says Charles Baron, a professor at Boston College Law School and author of a book about Jehovah's Witnesses and patients' rights. Prejudice played a role, he says, but there was also a "hegemony of modern medicine" and a view that people should not be allowed to make decisions that could amount to "suicide." In the 1970s, views began to shift toward allowing adults to refuse even life-sustaining treatment.

Mr. Baron acknowledges that in the case of young people, it's a tough issue. "How well-formed are those beliefs at age 17?" he wonders. But he notes that in a number of cases, people have refused transfusions and have not died, either because they didn't really need one or because they found alternatives. Alexis, in fact, has not received a transfusion and was recovering well enough to be released from the hospital last Thursday.

One reason this issue ends up in court is the emotional toll on health-care providers if a patient dies after refusing treatment. Mr. Perlin recalls such a case, although the patient was older than 18. Doctors and nurses grieved long after the media attention faded, he says.

The Massachusetts appeals court is still expected to rule - and some say the panel may well overturn the lower court's decision. When a minor and parents agree, as in Alexis' case, hospitals often yield to the family, says Linda Johnson of the Midwest Bioethics Center in Kansas City, Mo. But sometimes, especially in cases deemed to be life-threatening, doctors feel obligated to seek a court order, she says.