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13 Year Old Katie Fights the Establishment
Opinions of Patients Will Not Be Tolerated
This insane situation could have easily been avoided if some members of Katie's medical team had not been so arrogant and if Texas Child Protection Services (TCPS) had not been so narrow minded.
Last June I sent you the e-Alert "Amber Ambush" (6/15/05) with details about Katie's story. In a nutshell: After undergoing several months of chemo treatments for Hodgkin's disease, Katie's cancer was in remission and her doctor prescribed radiation as a preventive measure. Katie and her parents said no, based on the possible long-range side effects of radiation in the upper body (including damage to the heart muscle, lungs, spine and thyroid gland, a high risk of breast cancer and hormonal disruption). The Werneckes said they wanted to investigate less harmful treatment options.
This was unacceptable, according to Katie's doctor, who was so certain that his plan for Katie's treatment was the one and only course of action that he reported the Werneckes to TCPS. For the unforgivable offense of disagreeing with a doctor, Katie was removed from her family and ordered to undergo treatments. Just as all this was happening, Katie's cancer was found to be active again. At that point her parents agreed to additional chemo treatments, but not radiation.
Finally Some Good News
Court hearings continued throughout the summer, with the Werneckes fighting for custody of their daughter while Katie refused treatment. Then, last week a small ray of good news came from the Texas Supreme Court. Recognizing that Katie's parents are not monsters who would do their daughter harm, the court wisely overturned two lower court rulings:
- Katie's father may now visit her
- Katie's mother may now visit without being forced to promise authorities that she will encourage Katie to comply with the treatment plan
If this seems like small potatoes, it is. But the Werneckes - especially Katie's dad - are grateful to have more access to their daughter, even though visits are still strictly supervised. If a supervisor determines that Katie's parents are encouraging her to refuse any treatment, permission to visit their daughter will be revoked. Is this how you "care" for a cancer patient? Especially a patient who's a child?
Tyranny of Experts
Less than two weeks ago Katie's mother visited her daughter and encouraged her to allow further chemo treatments. Katie agreed, and this is most likely a good decision. Chemotherapy is used on a wide range of cancers, but most cancer patients don't realize that only nine types of cancer have been proven "highly responsive" to chemo. Hodgkin's disease is one of them.
Katie's doctors continue to recommend radiation therapy after four more months of chemo, so how her long-range treatment will play out is still unresolved. Attorneys for the Texas Department of Family and Protective Services have stated in court that the Werneckes are "medically neglectful" for refusing radiation. Apparently these attorneys are blissfully unaware of the irony of that statement. Hello! Earth to Texas! Removing an ailing child from loving parents is neglectful in ways you apparently can't conceive of.
In a U.S. News and World Report article about Katie's case, Bernadine Healy, M.D., notes that Texas state officials are mistakenly convinced that radiation treatment is the standard of care in this instance. Dr. Healy's article is appropriately titled "The Tyranny of Experts." Dr. Healy quotes James Nachman, M.D., a pediatric oncologist and a professor of pediatrics at the University of Chicago medical school. Dr. Nachman states that he approves of intervention by child services when it's a matter of life or death. And he adds that the use of radiation in a case like Katie's is NOT a case of life or death.
A new hearing to decide on Katie's custody will be held on November 18th. I'll watch for the results and keep you posted.
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