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  Ethics Matters

"When The Cure Seems Worse Than The Disease"

by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota

A Maine woman recently decided to discontinue medical treatment for her 4-year old son who suffers from HIV infection. Her decision came after the death in 1996 of her 3-year old daughter from AIDS. The woman's perception was that her daughter's suffering and death were a result of the medical treatment she had received.

The Maine Department of Human Services asked for custody of the boy, claiming his mother's refusal of medical treatment for her son amounted to child abuse and neglect. A state district court judge upheld her right to withhold treatment, saying that "The state of Maine is now in no position to tell her, in the case of her unique experience, that she is wrong in her current judgment to wait for better and more reliable treatment methods."

What does the woman's decision tell us about how far parents should be able to go in making unorthodox decisions about medical treatment for their children?

Center for Bioethics

What's your opinion?
Refusing lifesaving treatment

This case looks similar to the decisions some parents must make for a terminally ill or gravely injured child. When it becomes clear that treatment will only prolong the process of dying, our society has endorsed parents' rights to withhold or withdraw treatment from a child when they think it is in his best interests. This decision generally comes after the medical judgment that there is nothing more to offer the child.

We also sometimes allow parents to refuse medical care for their children because of their strongly held religious convictions, though courts have been willing to step in and require clearly lifesaving and relatively low risk treatments such as blood transfusions or standard surgeries, even against the wishes of parents.

But this case is only superficially like these other cases. The woman's claim is not based on her religious convictions, and unless all treatment for HIV/AIDS (and many other serious illnesses) should be viewed as merely prolonging death, this refusal can't be on the basis of terminal illness. Instead, her claim is that the best treatment her child's physician has to offer is worse than no treatment at all.

Is the treatment worse than the disease?

In children with HIV/AIDS, the treatment may appear to be worse than the disease. The side effects of anti-HIV drugs can be severe, and in the end may not prevent the infection from advancing. But it is impossible to know whether the course of the disease would have been better, worse or the same without treatment. While there is limited knowledge about treating children with HIV, that is better than no information at all. And there is still much more to be learned about drug combinations and their effects in children, based on the effectiveness of drug "cocktails" in adults with HIV. The real tragedy may be that parents must make these medical decisions without adequate information about the consequences of their choices, and also that there aren't more choices to offer. The federal government has recognized this shortcoming, and recently proposed new regulations that would require more drug testing and medical research in children.

Deciding together, but parents' responsibility

Even with all the uncertainty, it is clear that HIV infection will not improve without treatment. While it is within parents' rights to decide medical treatment for their children, treatment refusal must be reserved as an option for only the narrow cases in which treatment will merely prolong death or when it conflicts with religious convictions.

No one is better able to assess the best interests of children than their parents, but parents' medical decisions must be based on the best information and medical advice, which may well change during the course of their children's care.

Even the best medical treatments have side effects that may seem worse than the illness they are supposed to treat. But serious illness often requires strong medicine, and we shouldn't deprive children of its benefits without equally strong reasons.

How far parents should be able to go in making unorthodox decisions about medical treatment for their children?
Post your opinion here.

Visit the
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.

"Ethics Matters" is a bi-monthly feature from the
Center for Bioethics and CNN Interactive.

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