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Why Katelyn Can't Swallow

Who pays -- and at what price?

by Mike Hartnett (June, 2004)

Shortly after my previous rant about rising medical costs, I received an update from my niece Karen about her daughter, Katelyn, a 12-year-old who had undergone surgery for a brain tumor.

This occurred after years of taking Katelyn to doctor after doctor, who dismissed her headaches and stomach problems as mere childhood neurosis. Finally a doctor gave her an MRI and discovered a brain tumor at the base of her brainstem � apparently one of the worst locations for a tumor.

The surgery was successful as brain surgeries go, but it left Kaitelyn needing massive amounts of therapy, particularly "swallow" therapy because she can't eat without a feeding tube.

Katelyn was in Boston's Children's Memorial Hospital for about two weeks after the surgery, as doctors fought successfully to stabilize her blood pressure. Then the hospital released her to a rehab center to continue her therapy.

The entire family was grateful Karen is a full-time teacher, and therefore has insurance. Her husband, Jim, has a small roofing business and like many in the craft industry, can't afford the cost of premiums.

Then we received this email from Karen:

"So, after four days of rehab, insurance has decided that Katelyn no longer needs to be here because she can "walk and talk" � never mind that she can't swallow or eat. We are being discharged on Saturday to go home. The rehab here is in the process of finding an intensive swallow/speech, five-day-a-week program for us closer to home. We will also get physical therapy one-two days a week for awhile, that is until insurance once again deems it's not necessary for her any longer.

"Insurance has also informed us that they will cover 80% of the cost of the feeding machine (which, by the way, Katie NEEDS in order to survive), but won't cover the bags, syringes, and FOOD for the machine. Nice, huh?? It seems the food is not a necessity??????? She can't swallow, therefore she can't eat. If she can't eat, she can't survive. How can she eat? With the feeding machine, of course, but let's not supply the food to go along with it.

"Can you tell I'm a little frustrated??"

Sign of the times.

You're first reaction is probably the same as mine: How could that insurance company be so cruel?

But if you are responsible for the bottom line of your business, you know the answer. If the company doesn't watch its costs, it will go out of business, and then no one will have insurance. And if the company doesn't make a profit, stockholders will scream bloody murder. (By the way, if you have a 401K retirement plan, it's possible that you're one of those stockholders.)

So the insurance company has to draw the line somewhere, and it decided that if a little girl can't swallow after all the money the company paid for her surgery, well, that's her problem.

I think this is an issue we may all face, if we haven't faced it already. Someone we love will require expensive, available treatment and our insurance company, if we're lucky enough to have one, will say no.

Dr. Lewis Thomas wrote in his book, Lives of a Cell, how medicine has changed. As a boy Thomas would often accompany his father, a country doctor, on the family horse-drawn buggy as he made house calls. Decades later, Thomas became dean of the New York University Medical School and president of the Memorial Sloan-Kettering Cancer Center, and he won a National Book Award for his essays on medicine.

Two things struck me about Thomas' book: First, before the discovery of antibiotics, doctors did not cure many illnesses. They had wonderful bedside manners because they couldn't offer their patients much else. As science's ability to actually relieve patients' suffering improved, medicine became colder, more impersonal. Machines replaced the consoling words and comforting hands. But those machines are expensive.

Thomas also wrote about the money in medicine. His father was not wealthy; comfortable, yes, but no more so than the town banker, judge, or lawyer. Medicine was not an automatic ticket to riches.

I wonder what he would think if he heard what my wife, Barbara, heard as she was beginning to go under anesthesia for simple arthoscopic knee surgery a few years ago. The surgeon was complaining to a nurse that he needed to buy a bigger yacht.

That surgeon is no different than any of us. We all want more � more profits for our businesses, more return on our 401K, and of course more health care. It's human nature to complain, "This is not enough."

I suppose it comes down to philosophy, or economics, but I don't care what you call it. I just want little Katelyn to be able to swallow.

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