Two years after her husband's death and almost 10 years after his cancer diagnosis, a woman examines the wrenching emotional and financial costs of keeping him alive.

It was sometime after midnight on Dec. 8, 2007, when Dr. Eric Goren told me my husband might not live till morning. The kidney cancer that had metastasized almost six years earlier was growing in his lungs. He was in intensive care at the Hospital of the University of Pennsylvania in Philadelphia and had begun to spit blood.

 

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Terence Bryan Foley, 67 years old, my husband of 20 years, father of our two teenagers, a Chinese historian who earned a doctorate in his 60s, a man who played more than 15 musical instruments and spoke six languages, a San Francisco cable-car conductor and sports photographer, and an expert on dairy cattle and swine nutrition, film noir and Dixieland jazz, was confused. He knew his name, but not the year. He wanted a Coke.

Should Terence begin to hemorrhage, the doctor asked, what should he do?

This was our third end-of-life warning in seven years. We had fought off the others, so perhaps we could dodge this one, too. Terence's oncologist and I both believed that a new medicine he had just begun taking, Pfizer's Sutent, would buy him more life.

Keep him alive if you can, I said.

Terence died six days later, on Friday, Dec. 14.

What I couldn't know then was that the thinking behind my request -- along with hundreds of decisions we made over the years -- was a window on the impossible calculus at the core of today's health care dilemma. Terence and I were eager to beat his cancer. Backed by robust medical insurance provided by a succession of my corporate employers, we were able to wage a fierce battle. As we made our way through a series of expensive last chances, like the one I asked for that night, we didn't have to think about money, allocation of medical resources, the struggles of roughly 46 million uninsured Americans, or the impact on corporate bottom lines.

Terence's treatment was expensive. The bills for his seven years of medical care totaled $618,616, almost two-thirds of which was for his final 24 months. Still, no one can say for sure whether the treatments helped extend his life.

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. Along with a colleague, Charles Babcock, I spent months poring over almost 5,000 pages of documents collected from six hospitals, four insurers, Medicare, three oncologists and a surgeon. Those papers tell the story of a system filled with people doing their best. Stepping back and looking at that large stack through a different lens, a string of complex questions emerges.

 

31% for paperwork

Health care costs represent 17% of today's U.S. gross domestic product. Medicare devotes about a quarter of its budget to care in the last year of life, according to the policy journal Health Affairs. Yet as I fought to buy my husband more time, it didn't matter to me that the hospital charged more than 12 times what Medicare then reimbursed for a chest scan. It also didn't matter that UnitedHealthcare reimbursed the hospital for 80% of the $3,232 price of a scan, while a few months later our new insurer, Empire BlueCross BlueShield, paid 24% for the same test.

And I didn't have time to be thankful that the insurers negotiated the rates with the hospital so neither my employers nor I actually paid the difference between the sticker and discounted prices.

 

Looking at that stack of documents, it is easy to see why 31% of the money spent on health care went to paperwork and administration, according to research published in 2003 in The New England Journal of Medicine. That number has stayed the same or grown since then, says Dr. Steffie Woolhandler, a professor at Harvard Medical School and a co-author of the study. Often Terence's bills, with their blizzard of codes, took days to decipher. What did "opd patins t" or "bal xfr ded" mean? Was the dose charged the same as the dose prescribed?

The documents revealed an economic system in which the sellers don't set the prices and the buyers don't know what they are. Prices bear little relation to demand or how well goods and services work. "No other nation would allow a health system to be run the way we do it. It's completely insane," said Uwe E. Reinhardt, a political economy professor at Princeton University who has advised Congress, the Department of Veterans Affairs and other federal agencies on health care economics.

In reviewing Terence's records, we found Presbyterian Medical Center in Philadelphia charged UnitedHealthcare $8,120 in 2006 for a 350-milligram dose of the drug Avastin, which should have been free as part of a clinical trial. When my Bloomberg colleague inquired, the 80% insurance payment was refunded. A small mix-up, but telling.

Some drugs Terence took probably did him no good. At least one helped fewer than 10% of patients. Today, pharmaceutical companies and government agencies are trying to sort out the economics of developing drugs that will help only a small subset of patients. These drugs are very expensive. Should every patient have the right to them?

Terence and I answered yes. Each drug potentially added life. Yet that, too, led me to a question I still can't answer. When is it time to quit? Congress dodged the question last year as it tried to craft a health care bill. The mere hint of limiting the ability to choose care created a whirlwind of accusations of "death panels."

One thing I know is that I don't envy the policymakers. As the health care debate heated up, I remembered the fat sheaf of insurance statements that had piled up after Terence's death. Our children, Terry, 21, and Georgia, 15, assented to my idea of gathering every record to examine what they would show about end-of-life care -- its science, emotions and costs. Terence would have approved.

Taking it all into account, the data showed we had made a bargain that hardly any economist looking solely at the numbers would say made sense.

Why did we do it? I was one big reason. Not me alone, of course. The system has a strong bias toward action. My husband, too, was unusual, said Keith Flaherty, his oncologist, in his passionate willingness to endure discomfort for a chance to see his daughter grow from a child to a young woman and his son graduate from high school.

After Terence died, Flaherty drew me a picture of a bell curve, showing the range of survival times for people with kidney cancer. Terence was way off in the tail on the right-hand side, an indication he had beaten the odds. For many, an explosion of research and drug discoveries had made it possible to daisy-chain treatments and extend lives for years -- enough time to keep our quest from having been total madness.

Terence used to tell a story, almost certainly apocryphal, about his Uncle Bob. Climbing aboard a landing craft before the invasion of Normandy, Bob's sergeant was said to have told the men that by the end of the day, nine out of 10 of them would be dead. Said Bob: "Each one of us looked around and felt so sorry for those other nine poor sonsabitches."

For me, it was about pushing the bell curve. Knowing there was something to be done, we couldn't not do it. Believing beyond logic that we were going to escape the fate of those other poor sonsabitches.

It is hard to put a price on that kind of hope.

 

A shadow, but good odds

We found the cancer by accident, on Sunday, Nov. 5, 2000, in Portland, Ore. Terry had invited a dozen friends for a sleepover to celebrate his 12th birthday. I was making pancakes and shipping the boys home. Terence had been having stomach cramps for weeks. Suddenly he was lying on the bed, doubled over in pain. Our family doctor ordered him to the emergency room.

We were immediately triaged through. Not a good sign, I thought. The kids sat on the waiting-room floor, Barbies and X-Men around them, while Terence writhed in a curtained alcove. When he returned from a scan, the doctor said, almost as an aside: There's a shadow on his kidney. When he's feeling better, you should take a look at it. Both of us were annoyed. Why would we think about a shadow on his kidney? That wasn't the problem. He was in such pain he could barely breathe.

The cause of the pain turned out to be violent ulcerative colitis. The damaged colon was removed Dec. 13, in an operation that left Terence so weak that he spent three weeks, including Christmas morning, immobile in a chair. Colleagues delivered meals to the house. My sister wrapped presents. My boss sent over her husband to put up our lights. I felt so bad for Terence that I got him a cat, the pet he had long wanted. The orange kitten howled in a box under the tree.

And the shadow? We were so grateful he was out of pain that we would have ignored it had someone from the hospital not called to urge us to find out what it meant. Within a month, Terence was in surgery again. On Jan. 18, Dr. Craig Turner removed the diseased kidney. Emerging from the five-hour operation, Turner confirmed the worst: He believed the shadow was cancer. A week later, when Terence was well enough to walk into the doctor's office, Turner was reassuring.

"We got it all," he said.

Terence teared up. "Thank you for saving my life."

The bills from Regence BlueCross BlueShield of Oregon show the operation was relatively inexpensive -- just above $25,000, about 4% of the eventual total charged to keep Terence alive. Our share was $209.87. I never looked at or thought about the total cost, or the $14,084 that our insurance -- in reality, my employer -- paid. We never had to consider who was actually shouldering the bills.

Kidney cancer is uncommon, accounting for about 3% of all cancers, or about 50,000 new cases in the U.S. last year, according to the Kidney Cancer Association. Terence was a typical patient: an older man, overweight and an ex-smoker. Asymptomatic for a long time, most kidney cancers are discovered accidentally or too late. So we felt lucky. The first tool for fighting kidney cancer is usually the one used since medieval times: the knife, or its technological equivalent. If a tumor is removed early enough, before it flings microscopic cells into the bloodstream that can implant in other organs, surgery is close to a cure.

For Terence, the odds looked good. His 7-centimeter tumor showed no signs of having spread. According to the traditional method of evaluating, or staging, the cancer, that meant he had an 85% chance of surviving five years. A lab report soon chilled our optimism. Tests on Terence's tumor showed that he had so-called collecting duct cancer. Named for the part of the kidney where it is thought to originate, collecting duct is the rarest and most aggressive form of kidney cancer. In my online research , almost everyone who had it died within months, sometimes weeks, of diagnosis.

Most kidney cancers don't respond well to chemotherapy. There was no accepted treatment after surgery. Almost nothing was known about collecting duct cancer. Only about 1% of kidney cancer patients receive that diagnosis. Dr. Turner and I could find just 50 cases documented in the medical literature worldwide, and nothing had proved effective in halting it. "Watchful waiting" was the recommended path.

Waiting for him to die was what we feared.

He didn't die. He got better. We didn't know why. We tried not to think about it.

By spring 2002, we had moved to Lexington, Ky., where I was the editor of the local newspaper and Terence was creating an Asia Center at the University of Kentucky . He seemed fine. He began moving Chinese and Japanese history books to his office. On Saturdays we drove through the bluegrass to take 7-year-old Georgia to riding lessons. We reluctantly let 13-year-old Terry crowd-surf at his first rock concert.

Then, on May 6, 2002, Terry called me at work, panic in his voice. "Mom, come home. Dad is very sick."

His father was in bed, his face flaming with fever, shaking with chills under a pile of blankets. He could barely speak. "The cancer is in my lungs," he said. "I've got six to nine months left."

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A distant relative of mine has kidney problem, attempted a implant, it did not match, now has new issue, which  is liver problem and will take 6 months to take care of it. After 6 months they will try for second implant.
From cost point of view, it is already passed over his head, taking donations but can't give up unless all paths are closed. We know if the second implant does not success, will die soon. But we have not lost hope.  

Nightmares to think about old age and health problems.

I was more touched by the story - how wife never said no and never gave a hope, and all she did in her power. At the same time, it tells all abut inequalities and mal-practices in american Health care system and Insurance.

.. k ko kuro bhai rachha yeta?