Respectful Insolence

Update on Katie Wernecke

Last week, I wrote about two teens (Katie Wernecke and Abraham Cherrix) who, sadly, had been duped by the siren call of quackery and were, with the acquiescence of their parents, on the road to extinction. It figures that more information would become available over the weekend (after I had written my article) about both of them, first Abraham and now Katie:

Katie Wernecke, the cancer-afflicted girl at the center of a bitter state custody battle last year, is receiving secret treatment from an alternative practitioner at an undisclosed location.

“On a condition of receiving treatment, there can be no publicity at all,” says a note on the family’s Web site — prayforkatie. blogspot.com.

“We cannot tell you what we are doing or where we are at simply because the doctors and hospital would refuse to continue treatments.”

The note goes on to say that the secrecy requirement is the reason the family has provided no updates about 13-year-old Katie’s progress since a judge returned her to their custody last November.

The Werneckes have not returned messages left by the Chronicle this week.

A Baylor College of Medicine ethicist found the purported insistence on secrecy from a health care provider suspicious.

“Secrecy impedes the science of medicine, recalls nostrums that were condemned in previous centuries,” said Dr. Laurence McCullough, who heads the ethics research group at Baylor’s Huffington Center on Aging.

“If a doctor can’t be transparent about the therapy, it raises questions about whether it’s in the patient’s best interests.”

Indeed. In fact, after seeing Dr. McCollough’s comments, I only regret that I didn’t hammer on this point hard enough. If, as Katie’s father claims, doctors were threatening to stop treating Katie if he went public with what therapies she was receiving, I should have pointed out just how unethical such behavior would be. Under HIPAA regulations, a doctor can’t reveal confidential patient information, but neither should a doctor tell a patient that she must stay silent as a condition of care. Patient autonomy should be paramount. If a patient (or her father) wishes to discuss her therapy, it is not for the doctor to say that she should do otherwise. Whatever Katie’s father reported about the requirements of the doctors treating her sounds to me like coercion.

Worse, another thing that I hadn’t picked up on as much as perhaps I should is this:

The note states that the family has been to five states for treatments. It does not elaborate on Katie’s current condition, except to say she is “doing very well and has 2-inch long curly hair now.”

Indeed, the father stated:

We are not in hiding and did not move out of state. We have actually already been to 5 states for treatments.

To me, this sort of doctor-shopping smacks of desperation brought about by the progression of her tumors. I fear that Katie may not be long for this world. I base this sad assessment on my previous observations, her father’s statements, and this observation by the physician who treated her with high dose vitamin C:

Dr. Ron Hunninghake, the Kansas practitioner who originally treated Katie with vitamin C and still is in contact with the family, said Friday that the injections are not that effective by themselves, working best in combination with other treatment.

“Not that effective by themselves”? Now he tells us.

Comments

  1. #1 Abel PharmBoy
    June 5, 2006

    Thanks for staying on top of this – this stinks of medical ethics violations and I’m glad you included McCollough’s take. If I go back to my ethics training, I think that “nonmaleficience” is in there somewhere…and that includes giving treatments that are harmful or useless as well as withholding treatments known to be effective.

    I can’t believe that any doc giving Katie conventional chemo would ask the parents to withhold the info, so I fear that she is getting quack treatments. Where have the state boards of medicine been on this, or is that why they have gone to 5 different states. Even if the “doctors” are not MDs, state boards can step in to prevent the practice of medicine without a license, correct?

  2. #2 epador
    June 6, 2006

    If only they were taking a minor across State lines for immoral purposes, we might be able to get some legal action going. Although this certainly sounds immoral to me.

    I saw 100% failure rate in the patients I knew that went to Tiajuana. Or used Cancel. Or took Laurence Burton’s Immunotherapy (though one patient of his did get a rare fungal infection from the vaccine). But those are just anecdotes…

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