What to do when kids say no — laws cloudy when minors refuse treatment

Massachusetts court case stirs age-old debate back to surface

Should minors be afforded the same rights to refuse care as adults if it is certain they understand the decisions they are making? At what age should minors be considered old enough to make these choices? What, if any, power should physicians or family members have to override their decisions?

A recent court case in Massachusetts raised many of these questions again, but unfortunately elicited few answers.

In January, a state Superior Court there issued an injunction permitting physicians to perform a blood transfusion, if necessary, on a 17-year-old Jehovah’s Witness without her consent.

The hospital had sued to allow the transfusion on the grounds that it was in the patient’s "best interests and the interest of the State in preserving life and the protection of a minor." The hospital’s attorneys contended that the law was clear that an adult could refuse treatment, but not clear that a minor could do so.

In that case, known as the Rena case, the patient recovered without requiring the transfusion, and a higher court vacated the injunction on appeal because the issue was moot.1

This decision again left physicians and patients without clear guidance on what to do when a minor refuses treatment, say many ethics experts.

"These are difficult cases; no one really wants to face this issue," says the Rev. John Paris, SJ, Walsh Professor of Bioethics at Boston College in Boston. "No one wants to say to a 16-year-old kid that he must continue chemotherapy because his parents want him to have it and he doesn’t. But, what about a 5-year-old who doesn’t want an inoculation? With them, you say, Hold still.’"

When are minors mature’?

The Rena case hinges on the concept of "mature minors," notes Paris, who has followed the case closely.

Laws in most states officially recognize only two classes of minors, emancipated minors and unemancipated minors.

Emancipated minors — those who are married, pregnant, or have a court declaration nullifying the rights of their parents — are legally able to make medical decisions for themselves.

"If you have a 13-year-old who is married and pregnant, she makes all of the decisions for herself and for the baby," explains Paris. "I have seen this in the [neonatal intensive care units], she is making decisions that, if she were not pregnant or a mother, someone else would have to make for her."

Courts and legislatures in some states also have recognized a limited right of young women to obtain birth control or an abortion without the consent of their parents, Paris adds.

"In this country we have put a lot of emphasis on autonomy, particularly for adults, but then it moves down [to autonomy for children]," he says. "It moved down primarily because of issues of birth control and abortion and whether minors could have these without their parents being notified. Some minors were accorded a special status because of these issues."

The expansion of this autonomy for some minors has raised the question of what rights all minors should have, and when and under what circumstances they should be able to make their own medical decisions, says Rosalind Ekman Ladd, professor in the department of philosophy at Wheaton College in Norton, MA.

"Under the age of 15, you have a real question about competence. There are lots of assumptions about younger children not being competent psychologically and otherwise to make decisions for themselves," she says. "But, there is a lot of literature that disputes that. Many good psychological studies have been done that illustrate the kinds of things that children would choose for themselves and the kinds of reasons they give for those choices."

Although not a legal designation in most states, many courts will recognize a physician’s determination that certain patients are "mature minors" as a rationale for allowing them to make some of their own medical decisions.

"There have been no court cases in which anyone has been prosecuted or held liable if they allowed a child over 15 to make a non-consent decision," she points out. "But the determination depends on the circumstances and the patient.

Indeed, even though the court vacated the injunction in the Rena case as moot, the appellate judges did indicate that they felt the original judge should have first heard testimony from the patient herself, says Paris.

When evaluating a particular patient’s request, weight must be given to several factors, say both Ladd and Paris: the age and maturity of the child or adolescent, the medical prognosis and the perceived benefit of treatment, and whether or not the child’s decision is made without coercion.

The most important consideration, believes Ladd, is the medical prognosis.

"We have had many cases that deal with whether someone might reasonably make the decision not to consent because there is no guarantee that the treatment is going to be successful," she notes.

In cases where there is no clear-cut benefit to treatment, more weight should be given to a minor’s wish to refuse treatment, concurs Paris.

"In the Rena case, there was a clear indication that this was a low-risk procedure with clear and significant benefits to the patient," he notes. "In other situations, for example, the case of a 13 year-old with cancer, in which all the normal courses had been pursued and the advised treatment was experimental and chances of a good outcome were not as well-known. I think the wishes of that 13 year-old should be listened to with great intensity."

Reference

1. Rena, 46 Mass. App. Ct. 355 No. 99-P-199, Appeals Court of Massachusetts, Berkshire; Feb. 16, 1999.

Sources

For more information on minors who refuse medical treatment, contact:

Rosalind Ekman Ladd, Department of Philosophy, Wheaton College, Norton, MA 02766.

John J. Paris, SJ, Walsh Professor of Bioethics, Boston College, Chestnut Hill, MA 02167.