Thirteen-year-old Katie Wernecke, the Texas girl
often in the national news lately, has Hodgkin's
disease.
After she endured four rounds of chemotherapy, her
parents believed she was OK. Then Katie developed what
was thought to be pneumonia. When doctors recommended
radiation treatment, Wernecke's parents refused it based
on their belief that the side effects were too dangerous
for a healthy girl.
The state of Texas removed Katie from her parents'
custody and ordered her to begin treatment. Now the
latest reports say tests show Wernecke's cancer
returned.
On "Today," Wernecke's parents said they
didn't want to deny her medical care. They said they
wanted a full explanation of her condition in
terminology they could understand. But Texas is
maintaining custody.
I know how the Werneckes feel. Doctors tend to talk
in medical jargon, using terminology that many cannot
understand. Most people don't want to look ignorant, so
they don't ask questions, or when they do, don’t ask
them in a manner that says “I need more information to
understand what is going on”.
When I became ill at 15, my parents and I didn't
really understand what was happening to me. We knew a
spinal-cord tumor was causing loss of the use of my
legs, bowels and bladder. We knew I had to have surgery
to remove the tumor. But we didn't know how I got the
tumor, why surgery was the only option or whether the
tumor would come back.
My parents were raised to follow doctors' orders
without question. They didn't need to know the details -
that was for the doctor to worry about.
When I questioned my surgeon about my medical status,
he became angry. I asked if I could get a second opinion
- a new option back in the mid-1970s. He bluntly told me
if I went to another doctor, he would not take me back
as a patient.
My parents were not in the room when he gave his
final answer, and he denied his reaction when I told my
parents about our confrontation.
That doctor, the hospital and all the medical records
from that life-altering period have disappeared. The
doctors I have now took educated guesses at what really
happened. While it's nice to have an idea, I'll never
know if the three drastic surgeries that made me a
paraplegic were necessary.
Explaining medical procedures is time-consuming and
sometimes frustrating for patients and doctors. Do some
homework when a doctor gives a complicated diagnosis.
Keep asking, "What does that mean?" or
"What are the benefits?" when a course of
treatment is prescribed. The job of a physician and the
duty of the patient is to understand one another.
The Werneckes were divided because of
misunderstanding and fear. The parents love Katie, but
they wanted information so they could make an informed
decision.
Somewhere down the line, that didn't happen. Too bad
the judicial system had to intervene to push the point.
You can e-mail Barbara J. McKee at chairgrrl@chairgrrl.com.
Her column runs on Tuesdays.
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