Doctors face dilemma if boy refuses chemo

A 13-year-old boy's vow to resist chemotherapy by punching or kicking anyone who tries to force it on him will present doctors with a tough task if they can't change his mind.

A Brown County judge was due Tuesday to hear the results of his order that Daniel Hauser undergo a chest X-ray and his family pick an oncologist to be treated for Hodgkin's lymphoma.

Daniel and his parents stopped chemotherapy after one treatment and opted for "alternative medicines," prompting Brown County authorities to intervene. The cancer is regarded as highly curable with chemotherapy and radiation, but likely fatal without it.

Daniel was scheduled for an X-ray Monday. His attorneys couldn't confirm he kept the appointment, and calls to the Hauser home in Sleepy Eye rang unanswered.

"It can be very difficult to treat a 13-year-old boy who doesn't want to be treated," said Arthur Caplan, chair of the medical ethics department at the University of Pennsylvania. "I don't want to say it's impossible, but it makes it very tough on the doctors."

Last week, Brown County District Judge John Rodenberg said Daniel's parents, Colleen and Anthony Hauser, were medically neglecting him. Rodenberg said if a new X-ray shows a good prognosis for Daniel, chemotherapy and possible radiation appear to be in his best interest, Rodenberg said.

The judge said chemotherapy would not be ordered if the cancer is too advanced.

If chemotherapy is ordered and the family refuses, Rodenberg ruled, Daniel will be placed in temporary custody. It was unclear how the medicine would be administered if the boy fights it.

Caplan said the medical community recognizes a person's right to refuse treatments - but those rights don't extend to incompetent people or children. Still, he said: "It is hard to treat someone who won't cooperate."

Caplan said restraints might be used. Dr. Steven Miles, a professor of medicine and bioethics at the University of Minnesota Center for Bioethics, said a hospital may assign a companion to a child, or administer a sedative to relieve anxiety. In addition, Miles said, sometimes foster homes catering to medically ill children can help by providing a loving environment and education about what the child needs.

"The kid says he's not sick and the mom says she'll treat it if its an emergency," Miles said of the Hauser case. "With cancer, if it's an emergency, it's too late."

In court testimony earlier this month, doctors familiar with Daniel's case said they would have a hard time administering chemotherapy to Daniel if he resists.

Dr. Bruce Bostrom, a pediatric oncologist at Children's Hospitals and Clinics of Minnesota, and Dr. Vilmarie Rodriguez, a pediatric hematologist and oncologist from the Mayo Clinic, both testified at the Brown County hearing. They said their hospitals have child life specialists and psychologists to help children work through their fears.

Children's also has an integrative medicine program that uses a variety of techniques to help patients deal with the side effects of chemotherapy and radiation. Massage, acupuncture, aromatherapy, or music therapy are some of those.

Brian Lucas, a spokesman at Children's, said ethics experts met Monday to make sure everyone was up to speed on Daniel's case and plan for any possibility. It wasn't immediately clear where the boy might be treated.

"We just want to make sure we're ready with all of those resources and can be as helpful to the family as possible," Lucas said.

Caplan said he believes the judge made the right decision in Daniel's case.

"This case falls, for me, squarely in the 'You've gotta get him treated' camp," Caplan said. "If it's not life and death, you might not push so hard. If it's not a proven treatment ... you wouldn't push so far."

But doctors may not have to follow the court order "if they feel it can't be carried out - if it's literally impossible to get a needle into this kid," Caplan said.

Dr. Susan Sencer, medical director of the pediatric hematology and oncology program at Children's, said incorporating natural healing techniques into medical care can help. And educating parents is a big part of treatment.

"Cancer is the scariest word in our vocabulary and to hear that your child has cancer just shakes you to your very foundation," Sencer said.

Part of the job of the oncologist, she said, is to help families make sense of what is essentially a "fluke of nature."

She said doctors at Children's will work with parents who want to use alternative treatment methods, to make sure any herbal supplements or vitamins are being used correctly, and being used at times that will actually help a patient - such as before, after, or during chemotherapy.

"What we are interested in doing is helping people on the journey through their cancer therapy and recognizing that it changes a child and changes a family and we want to be able to support them at every step along the way," Sencer said.

(Copyright 2009 by The Associated Press. All Rights Reserved.)