The case of Daniel Hauser, the 13-year-old boy who has a highly fatal form of cancer, took a sad turn this week. Hauser’s mother, Colleen, took the boy and fled the family’s Sleepy Eye, Minn., home after a court-ordered X-ray on Monday showed a nasty tumor growing in Daniel’s chest. Running away with Daniel to avoid medical treatment for him is a terribly dangerous and irresponsible thing to do.
The cancer will probably kill him unless he receives chemotherapy. The parents had allowed a round of chemotherapy to be given, and that had proven very effective in shrinking his tumors. But now that his mother has seen that chemo is tough to endure, she wants to follow the beliefs of the Nemenhah Band, a small group based in Weaubleau, Mo., which advocates healing methods tied to some Native American practices. It is important to know that Daniel’s dad, Anthony Hauser, does not agree and wants his wife and son to come home. And the head of the Nemenah Band is also urging the mom to bring Daniel back to Minnesota.
Daniel himself is too young to know whether he agrees with his mother’s desire to follow the beliefs. In addition, the boy has developmental disabilities that make it impossible for him to read and limit his understanding. He is not in any position to dissent from what his mother is doing.
Situation pits privacy against child abuse
What makes this case and others like it so morally difficult to assess is that it involves the clash of two moral goods. Daniel’s mother is trying to do what she believes is right for her son and wants the privacy and the freedom to act on her beliefs. Doctors who have seen Daniel and know he has a type of cancer that they can cure with almost 95 percent success want to help him. They know their treatment is sometimes awful for a patient to endure, but they also know that the success rate in following alternative methods of healing for this type of cancer is next to zero.
There are those who argue that no one has any business telling Colleen Hauser how to deal with her son. Put aside the fact that her husband does not agree. Should families be free to do whatever they want with the children in the name of religious or spiritual belief?
The moral answer is no.
We recognize that parents can and sadly sometimes do abuse or neglect their children. What is a bit harder to recognize is that they can do so in the name of religious or spiritual beliefs.
Children have been told at age 10 or 11 that their religion demands they be married off to church elders. Children have been seen by their parents as possessed by demons and beaten within an inch of their lives. Children can be told that it is God’s will that they die miserable and suffering from diabetes, meningitis or a twisted intestinal tract. Many have undergone excruciating deaths.
In all of these cases, parents are doing what they think best according to their religious or spiritual views. But that does not make these actions any the less abuse of innocent and dependent children. The government absolutely has a role to play in protecting kids in these circumstances. Not by kicking in the door of the parent’s house, but, by having a local court review the facts, hear testimony and then make a decision about limiting parental and religious freedom.
Critics' rhetoric nothing but hyperbole
Let’s knock off all the rhetoric flying around about the government crushing parental rights and religious freedom in cases like that of Daniel Hauser. It is only after a court hearing by an impartial judge who knows local values that a court order might be written to override parental authority. Anyone who looks at the 52-page decision of the judge who ordered treatment for Daniel will realize that critics who yak on about cops kicking in the door of helpless parents trying to follow their religion are engaging in nothing but irresponsible hyperbole.
So there have to be limits to religious freedom when it comes to kids. When do those limits justify ordering treatment for a kid like Daniel?
Answering this question requires paying attention to three other questions. First, is the disease life-threatening or likely to produce severe disability if left untreated? Second, is there a treatment proven to be effective and one that would be recommended by the overwhelming majority of medical specialists? And can the young patient participate in any way in the decision to refuse care — and articulate reasons for doing so?
Not all cases work this way. A 17-year-old who has been through three liver transplants and faces a fourth with almost no chance of survival should be able to say no even when his parents want the operation done. A young girl dying of cancer for which only a highly experimental and unproven treatment exists should not receive it if her parents say no — the odds are too long. But a child with lethal but treatable ailments — such as diabetes, meningitis, severe asthma, bee sting allergy, Hodgkin’s lymphoma, an obstructed intestinal tract or other lethal conditions — should not be asked to die in the name of parental refusals of proven effective treatment.
Daniel Hauser is such a child. His mom should listen to her husband and religious leader and bring him home. Daniel can get through the chemotherapy. He will need a loving and supportive family to do so. His family can work with his doctors to make that happen. I hope they do.
Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.