We had successfully kept the disease at bay for more than five years. Now, the cancer was beginning its spread. We had run out of official options and were eagerly turning to experimental treatments. A clinical trial of a previously untried drug combination enabled us to eke out another 17 months of life — time that we used to move our son into college, to celebrate our 20th wedding anniversary, and to travel to Spain with our daughter and watch the shifting colors of the Mediterranean. On Dec. 14, 2007, he died.
Afterwards, I wondered: Had we done the right thing? Had we done enough? Or maybe, had we done too much? Then, a year or so later, the raging health-care debate raised the issue of so-called "death panels." I realized that as a journalist, I could find out how much our choices had cost us. As a widow, I could explore the question that had haunted me: Should we have done something different?
Along with Chuck Babcock, a colleague from Bloomberg News, where I had moved after departing The Inquirer, I spent months collecting and poring over almost 5,000 pages of documents relating to Terence’s care — records from six hospitals, four insurers, Medicare, three oncologists, and a surgeon. It was easy to see from all these records why health-care costs represent 17 percent of today’s U.S. gross domestic product. And why Medicare devotes about a quarter of its budget to care in the last year of life. And why nearly a third of all health-care spending goes to paperwork and administration.
Terence’s treatment was expensive. Still, no one can say for sure if the treatments helped extend his life. Early in has cancer he chose a conventional treatment — Interleukin-2 — which cost $735 per daily dose, made him violently ill, and probably did nothing. Toward the end, we went with clinical trials of as yet-unproven combinations. We think those drugs — billed at $27,360 per dose — did buy us more time. But even now, years later, I’m not sure.
The bills for his seven years of medical care totaled $618,616, almost two-thirds of which was for his final 24 months. Over the final four days before hospice — two in intensive care, two in a cancer ward — our insurance was billed $43,711 for doctors, medicines, monitors, X-rays, and scans. Two years later the only thing I can see that the money bought for certain was confirmation he was dying.
We clearly bought a lot more care than we realized we were buying. I knew he had a lot of CAT scans, for example, but I would have guessed probably about two dozen over the seven years. The real number, teased out of the paperwork, was 76. More than 10 a year for seven years. Were all of them ordered for good reason? I am positive. Were all of them absolutely necessary? Probably not.
Yet as I fought to buy my husband more time, I never stopped to ask. Neither did he.
The turmoil at The Inquirer, plus our many moves over the previous years, gave us a startling insight into the Byzantine ways in which health care is priced and paid for. Because The Inquirer was sold to a new owner — who immediately changed our health insurance plan — I was able to see something strange in the records we collected: what two different insurance companies paid for the same procedure.
In late 2006, as his oncologist was checking how far the cancer had spread, Terence had a scan at University of Pennsylvania hospital, which billed the insurance company $3,232. My insurer that month was UnitedHealth Group, which paid $2,586.60, or 80 percent of what the hospital asked.
Three months later, after some experimental drug treatment, Terence had another scan. Same patient. Same hospital. Same machine. Same $3,232 bill. The only thing that had changed is that our paper’s new owner had switched insurance companies. The new insurer, WellPoint Inc.’s Empire Blue Cross and Blue Shield, paid the hospital $775.68, or 24 percent.
At that time, Medicare was reimbursing $250.94 for the same procedure.
And what did someone without insurance pay the University of Pennsylvania hospital for a similar scan? We accidentally found that out too, when a stray record found its way into our pile.This unfortunate person, who was paying the bill out of pocket, paid $1,657 — or $881.32 more than Blue Cross paid the hospital, and $1406.06 more than Medicare paid.
What did Terence and I pay?
What was this all about? Why did these prices vary so much? And why was what actually got paid so wildly different from hospital to hospital and from insurance company to insurance company? It turns out that the price of care doesn’t have much to do with how good the doctor is, how promising the treatment is, how famous or advanced the hospital is, or whether it makes us better. What matters is who is the better negotiator in an opaque and hidden system that most people can barely fathom.
Would we have done something different had we been able to figure out the costs? I like to think we would have been smarter. That we would have asked better questions about what treatments we were choosing and why. Whether everything that everyone suggested was strictly necessary. Maybe we could have simplified our lives a bit, as well.
One thing I know is that Terence cared a lot about the world around him. In his last years, he was raising money for surgery for a child injured in Iraq, and wrapping weekly care packages for the troops. He was sending money to a poor grammar school not far from our home. He was studying Arabic — his seventh language — and working to become qualified to teach English as a second language. He would have liked to know more about how he spent enough money to vaccinate half a million children in developing countries. Was all that money well spent? Could it have been spent better? He would have thought hard about that.
Amanda Bennett is the author of “The Cost of Hope: A Memoir,” which will be published by Random House on Tuesday. Excerpted from "The Cost of Hope," copyright © 2012 by Amanda Bennett.