In the battle between families and the courts over medical treatment for kids, who has the last word?

Newsweek Web Exclusive May 19, 2009

Parents' Rights, Judges' Rules

by Kate Dailey

Last week, Daniel Hauser sat quietly in a Minneapolis courtroom while adults debated how to combat the Hodgkin's lymphoma that has invaded his body. Doctors wanted the 13-year-old boy to undergo chemotherapy and radiation. His parents were resisting: their religion advocated natural and homeopathic methods. The judge ruled on Friday that Hauser's family must select an oncologist and that he must receive chest X-rays to determine the extent of his cancer, the results of which would help determine a new medical plan of action. By Tuesday, the boy and his mother were missing, having skipped the scheduled chest X-ray appointment; a warrant has been issued for the mother's arrest.

It's a dramatic case, to be sure. But it is not the first time the wishes of a family have conflicted with the rules of the state: parents and pediatricians have faced off on a number of issues recently, from mandatory vaccines to a child's right to medical privacy. It's hard enough to treat a sick kid when everyone's on the same page. But when parents and doctors disagree about a child's treatment, who gets to decide?

"You can't run a stop sign, you can't pull a gun on someone and you can't deny a person lifesaving medical care," says Dr. Doug Diekema, director of education at Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital. "If a parent makes a decision that in the estimation of the court places a child at significant risk of serious harm, the courts can step in and protect that child."

States typically don't take this responsibility lightly, and in many cases will first weigh the risks associated with more extreme treatments against the perceived benefit. (The Minnesota court tried to leave the Hausers with some authority, allowing them to choose the oncologist who would oversee the mandated treatment.)

"There's got to be a balancing of potential benefits against potential harm," says Alan Meisel, director for the center of bioethics and health law at the University of Pittsburgh. "In some situations you have a treatment where the likelihood of success is very small, and in situations like that, the courts are much less likely to order the treatment."

In Hauser's case, however, his disease has a very high rate of remission (90 percent) when treated with radiation and chemotherapy—difficult procedures, but by no means experimental or unproven. That's why when thinking about cases like this, the basic standard is not simply "What's in the best interest of the child," but rather, "Will the refusal of the treatment cause harm to the child?" The phrase "best interest" can be interpreted in different ways. "If it's a Jehovah's Witness who doesn't want their child to go to hell for getting a blood transfusion, their belief system tells them it's not in their child's best interest to get it," explains Diekema.

When it comes to mandating vaccines, an issue state medical agencies largely try to tiptoe around by placing the onus on the school system, the question is one of public health: failing to vaccinate your child may not injure her, but it could put the rest of the classroom at risk.

For that Jehovah's Witness, of course, damning a child to eternal hellfire seems a lot more harmful then denying her a treatment to save her physical body. But while adult patients can refuse treatments on grounds of faith, the religious convictions of a child—or of their parents—are not generally an acceptable legal defense against withholding lifesaving treatment. "One of the arguments used is that this isn't the decision of the child. You can't really say the child has a religious interest, because the child is too young to formulate a significant religious interest, and therefore the parents are imposing religion on their child," says Carl E. Schneider, a professor of law and internal medicine at the University of Michigan. However, he also points out the inherent problems with this argument, since the constitution places the responsibility for the religious upbringing of children in the hands of their parents.

That being said, forcing treatment on a child who doesn't want it is its own kind of ethical dilemma. "There are some kids for whom it becomes in their mind a vicious assault every time they're treated," says Diekema. "At a certain age and height and weight, it starts to seem inappropriate to hold them down on a regular basis to do what needs to be done." Daniel Hauser has reportedly vowed to punch, kick or scratch anyone who attempts to treat him. Even if medical support staff members are successful at physically restraining Hauser so that they can administer the chemotherapy, the psychological toll may impede his progress. With longer-term treatments—fighting cancer can take years—it's harder to successfully apply aggressive therapies if the patient is unwilling, especially because a certain mental toughness is required.

At 13, Daniel is far from the age where he could be making his own medical decisions, though judges are likely to weigh the value of a child's input on a case-by-case basis, rather than using an arbitrary age cutoff. It's remarkable how quickly terminal cancer can mature a 12-year-old. (Legal adulthood is 18, and certain decision-making authority can be granted at 16, but the line is blurry when it comes to children's medical care.)

In most cases, bioethicists encourage adults to allow children to at least participate in decisions about their medical care, especially when those choices will cause them pain. "Older children, especially adolescents, have a sense that they have opinions that are important to be listened to," says Dr. Dennis Drotar, professor of pediatrics and director of the center for treatment adherence at the Cincinnati Children's Hospital Medical Center. "Their opinions need to be discussed and heard and brought into the equation." He notes, however, that children don't always have the long-term perspective needed to consent to painful treatment. "A child may be more concerned with how much pain they'll have in the short term," he says. "Parents can understand the big picture."

Sometimes that big picture can get pretty muddy for parents, too. In cases in which one child is taking part in the treatment of a sick sibling by donating marrow or organs, for instance, a host of medical and ethical dilemmas come into play. Doctors work with the parents to make sure that the healthy child isn't unduly burdened at the expense of the sick one. "Parents need to understand that there's risks, and that it's their job to balance what good would come to one child against the harm of another, and that the interests of both children [need to] be taken seriously," Drotar says.

In some cases, parents even conceive another child in hopes of generating needed cord blood, bone marrow or organs, a scenario that serves as the plot line for My Sister's Keeper, an upcoming Cameron Diaz film. That kind of decision is extremely difficult for doctors to mediate. "You can't tell a parent whether or not to have another baby," Drotar says, noting that in some cases, parents may already have been planning to have a second child and just accelerate their timeline.

There are always exceptions, loopholes and specific situations that any blanket law or ethical edict can't properly address. There are legal exceptions carved out for issues such as abortion, where children may need to consent to a procedure without telling their parents, and separate ethical issues concerning homeless and foster children, who don't have parents present to aid in making difficult medical choices.

In the Minnesota case, however, the law and ethics seem to line up. Both suggest that Hauser will be forced to undergo the treatment that could save his life, provided the cancer hasn't already spread too far.

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