What You Don't Know Can Kill You: A Physician's Radical Guide to Conquering the Obstacles to Excellent Medical Care

Chapter One

Breaking All the Rules

On May 8, 2002, I found myself in the Patient Services Computer Room of the MD Anderson Cancer Center (MDA) in Houston. Chuck, my beloved husband of 30 years, was ensconced several floors below in the Infusion Center, receiving his third and final course of chemotherapy for a rare, very advanced chest tumor. During the first course, he was too sick for even family to visit. For the second one, his 90-year-old dad, Ben, flew in from Detroit. this time, our daughter Sara had taken off time from Public Defenders in D.C. and was keeping Chuck entertained chatting about her fiancé, fellow law student Joaquin Sanchez.

Chuck and I had been commuting between San Diego and Houston for five months now. This first phase of his treatment—three rounds of high-potency chemotherapy—had gone very well, and had shrunk the tumor considerably. After a rest back in San Diego following this last round of chemo, we'd return in June. At that time, MDA chest surgeons would try to remove every single bit of tumor remaining. Then would come radiation therapy, and finally more chemotherapy to, the oncologists called it, "mop up."

Linda, the MDA Associate Director of Patient Business Services, had waited until our second visit, in March, to broach a delicate subject. I think she had waited until it was clear the chemo was working.

Chuck's care over its entire course, Linda told me, was likely to cost well over $100,000. "Well over," she repeated, patting my hand. She waspatting my hand because, as she pointed out, our insurance was not required, by contract, to cover any of it, not one penny. That's because Chuck and I had broken all the Managed Care rules in getting him to MD Anderson.

Here is why we did so. It is a two-part story.

Part I: On Friday, January 31, 2000, Chuck was diagnosed with fluid around the heart by doctors at our local clinic. He was treated, improved rapidly, and was discharged the next day. Over the ensuing months, he appeared to recover entirely.

Part II: On Sunday, November 4, 2001 (22 months later), his pain and trouble breathing recurred. This time, doctors at the same clinic discovered that he'd had a tumor in his right chest all along, obvious on the chest X ray from January 2000; and that in the interim the tumor had invaded most of Chuck's right lung. After multiple tests, our local doctors told us that they could not identify the source—the kind of tissue composing this particular tumor. Since they couldn't diagnose it, they couldn't treat it. It was, they said, undiagnosable, untreatable, and rapidly fatal. They told us not to make a follow-up appointment until Chuck's symptoms became severe. And by the way, they thought that Vanderbilt Cancer Center in Nashville was doing cutting-edge research on this topic.

We asked our dear friends to help us and in December 2001 we fled, as if pursued by a monster, to Nashville, where Chuck was diagnosed with a rare, advanced, but treatable "malignant thymoma."

Within a week of the diagnosis, other friends helped us get an immediate appointment at MD Anderson where, on January 4, 2002, we learned of their protocol for curing—yes, curing, without recurrence!—advanced thymoma. A week later, Chuck began the long, tough road of chemotherapy, surgery, radiation, and more chemotherapy—a minimum, we were told, of a year's intensive treatment.

Our insurance contract mandated that any out of network care had to be initiated by our San Diego doctors, and pre-authorized by the network itself. Our out-of-state visits were so far out of network, and so unauthorized, we might as well have gone to the moon on our own and expected them to pick up the tab.

Linda assured us that she understood why we had acted so precipitously. But the task at hand was to convince Chuck's insurance company that we had had no choice, that we had had an urgent and compelling need to violate the contract.

She said she thought we might have a chance of getting the insurance company to authorize our out of network flight retroactively. That meant that they would pay 60 percent of the total costs. That would leave Chuck and me with maybe "only" $40,000 to pay out of pocket. Or maybe more. Maybe a whole lot more. Oh, I said.

"It's worth a try," she said, patting my hand again.

I had to agree. So once we were back in San Diego, I went to the clinic and asked for a record release form, which I took home and had Chuck sign. (Since April of 2003, a Federal law called HIPAA has allowed all Americans to obtain and review his or her own medical records. Prior to that, many states insisted that records be transferred only from doctor to doctor.)

I asked for a copy of the entire chart and was presented, the next day, with a four-inch stack of paper bundled into two rubber bands. Flying back to Houston in May of 2002, with Chuck in a Che-Guevara-type gift beret covering his chemo-bald head, both of us in hospital masks, and me lugging a five-pound briefcase, we pretty much became the new best friends of the security officers.

How lucky, we told each other, that our physician and academic friends had gotten us help so quickly! What did people who didn't have such friends do? Or any medical training themselves?

What I now know for certain is that neither dear friends, nor luck, nor money, nor even medical training, is what you need to survive the built-in booby traps of our medical care system. What you need is vigilance over your own care as it happens. Because once something dire gets started, all the expertise and goodwill in the world may not be enough to fix it.