Jewish Museum/Prague

In the late 1980s a seventeen-year-old girl, known to the courts as E.G., developed acute nonlymphocytic leukemia.

Like her mother, E.G. was a Jehovah's Witness. She and her mother agreed to treat the leukemia with chemotherapy but they refused all blood products—E.G.'s doctors felt she would need transfusions to counter the effects of the drugs given to treat the leukemia. When she refused the blood her doctors reported the case to an Illinois child protective agency, which filed a petition in juvenile court alleging child neglect. A trial court agreed with the state agency and appointed a guardian to authorize transfusions for E.G., who appealed the decision. The appellate court found the adolescent to be a "mature minor" who could refuse transfusions on religious grounds, but agreed with the trial court that E.G.'s mother was neglectful. When the Illinois Supreme Court reviewed the decision, they agreed that E.G., having been judged adequately mature, could refuse blood products and found that her mother's acquiescing to the decision did not constitute neglect.

The case raises some important issues regarding minors, religion, and health care. While many children profess a belief in God, it can be difficult to determine the extent to which their expressions represent mirroring of their parents beliefs. At what point in human development does an individual possess the requisite understanding and maturity to make a meaningful choice about a faith tradition? Are the standards used to measure an adolescent's readiness to drive a car, vote, or enter into a contract adequate to judge his or her acceptance of God? How should we understand a child, or for that matter the child's parents, that accepts some aspects of allopathic medical care but rejects others on religious grounds? Some physicians argue that such picking and choosing is inherently irrational, and therefore evidence of an inability to make reasonable medical decisions.

Jehovah's Witnesses reject cellular blood products based on several passages in the Old and New Testaments. Acceptance of noncellular elements of blood (plasma, immune globulin, other blood products that do not contain red or white blood cells or platelets) is left up to the individual's conscience. Similarly, the group does not prohibit solid organ transplantation, despite the fact that the transplanted organs may contain residual blood from the organ donor. Witnesses accept other elements of modern medical treatment, relying on their interpretation of scripture solely for the prohibition of selected blood products.

The selective rejection of limited and specific aspects of allopathic medicine by Witnesses disturbs some physicians. These doctors sometimes have an easier time understanding, if not accepting, the more thoroughgoing rebuff of modern medical treatment by Christian Scientists and others. In the last half of the twentieth century U.S. courts have generally upheld the right of adult Witnesses to refuse blood, even in life-threatening circumstances. But the picture has been quite different with regard to minors. On the theory that children of Witnesses should have the opportunity to grow up and make their own decisions whether to accept or reject the views of their parents, U.S. courts routinely reject Witnesses' efforts to prevent transfusions when physicians claim they are necessary to sustain a child's life. In the case of E.G., the Illinois Supreme Court , told the legal system and physicians to slow down and think about their typically reflexive overriding of the views of minors who accept the Jehovah's Witnesses doctrine.

The Court's decision reflected a trend in U.S. law toward recognizing the arbitrariness of age as a criterion for determining decision making capability. Some children have the intellectual capacity and maturity to make important decisions, even life and death ones, well before their eighteenth birthdays. At the same time, many over the age of eighteen, despite their legal entitlements, lack the skills necessary to make good judgments—whether about medical care, employment, handling their finances, or sexual activity. The Illinois Supreme Court recognized a legal notion other courts and some state legislatures had increasingly embraced since the 1960s, the doctrine of the mature minor. The Court said that clinicians, the state (e.g., child protective agencies), and lower courts should examine the particular abilities of minors to make specific decisions. In some cases, including that of E.G., a minor may be deemed mature enough to embrace religious faith even when the beliefs have grave implications for his or her survival.

Not everyone agrees that what happened in the case of E.G. is a good thing. Advocates such as Scott, Reppucci, and Woolard, authors of a 1995 paper on adolescent decision making, feel that such court decisions represent bad public policy. They argue that adolescents routinely act in ways suggesting a systematic incapacity to make good choices. They cite studies showing adolescents 1) too easily influenced by others (peers, family members); 2) too tolerant of risks; and 3) too focused on the short-term consequences of their actions to make reasonable, independent decisions. According to this view, with just a few more years of seasoning most will behave quite differently from the way they act within their teenage years. Presumably this view applies to matters religious as well as to those secular.

What is the pastoral counselor, physician, or ethics consultant to make of all this? Surely we cannot equate religious sincerity, or even degree of devotion to religious practices and principles, with mature acceptance of faith. Whatever it means fully to adopt a religious tradition into one's heart and soul, simply counting how often a young person attends religious services or how well she or he can recite religious teaching does not fully address the question of the maturity of the belief. We have no touchstone for assessing the depth of religious conviction. Should we then handle religious refusals of treatment the same way we deal with other treatment refusals, relying on the same measures ordinarily used to assess decision-making capacity?

In the United States, law and ethics strongly support personal autonomy for adults. Clinical and legal assessments of capacity or competency do not rely on an assessment of the results of a patient's thinking. If the individual has the required information, understands what it means, appreciates the consequences of choosing among alternatives, and makes a decision without undue influence from others, our system does not require a rational choice. A fifty-something professor can choose not to have surgery for coronary artery disease, against the advice of her physicians, even if her reason is her discomfort with others looking at her naked body on the operating table. She can reject recommended therapy for cancer in favor of a trip to Tahiti, even if everyone else thinks she is making a "crazy" choice.

However, we have a different standard for decisions about minors. We do require that minors make rational choices or that their legal guardians, usually their parents, do so. We respect the choice of a teenager to cooperate with recommended treatment and expect that his or her parents will agree to the treatment on the minor's behalf. The decisions have to be rational or reasonable, in the eyes of clinicians and, typically, the state. Minors should not have the opportunity to make the irrational decisions their somewhat older friends or siblings can.

But perhaps we should make exceptions from time to time. While we should presume teenagers cannot make good life or death medical choices, some ought to have the chance to win enough respect from clinicians or judges to make precisely those choices. In their cases, it should not matter whether the basis for the choice involves spiritual beliefs or preferences based on prior experience.

Ambivalence about this matter seems inevitable. We want the states to remain distant from family functioning, but we also have a hard time accepting religious perspectives on the meaning of life and death when they deviate too far from mainstream secular or religious views. For those whose religion does not fear death, the state's intervention in the lives of children—even when intelligent adolescents embrace the faith-must seem cruel indeed.

Joel Frader is Professor of Pediatrics and Medical Ethics and Humanities at Northwestern University Medical School.