Why Did Her Husband’s End-of-Life Care Cost So Much?

Illustration by Oliver Munday

On Thursday, Nov. 8, 2007, my husband, Terence Foley, lay down on the floor of a doctor’s examining room and refused to get up.

For seven years Terence and I had fought against his kidney cancer. The disease was now spreading to other parts of his body. He was exhausted and coughing. So worn out he couldn’t sit upright. He twisted and squirmed trying to make himself comfortable. I bundled his jacket under his head and covered him with my coat.

He was clearly very sick, yet we still weren’t giving up. Our oncologist, Dr. Keith Flaherty, believed that an experimental treatment would gain Terence more life. Meanwhile, he had sent us to this lung specialist, hoping he could attack one of the tumors and make Terence more comfortable while we waited for the new medicine to take effect.

Instead, shaking his head, the doctor we had never met before admitted Terence to an advanced-cancer-care ward at the University of Pennsylvania Hospital. And then an entirely new set of doctors took over, and there began the kind of end-of-life drama that unfolds in hospitals across the country every day.

During those four days Terence had his blood drawn—eight times. Urine collected at least twice. There was a CT scan of his chest and an MRI of his brain. A physical therapist dropped by several times. A nutritionist talked about cancer fatigue, decompensation, and calorie needs. Over the stay, at least 29 professionals—nurses, physical therapists, a nutritionist, and nine M.D.s—attended to his needs. We had never met any of them before, and I don’t recall ever meeting the majority of them even then.

At the time, I realized that many of these hospital professionals disagreed with our oncologist about my husband’s chances. But until years later, when I read Terence’s medical records, I didn’t realize that they had prodded and X-rayed and scanned and tested him even though they thought he was dying. Soon. The discharge record after his four-day stay expresses regret that they could offer no more than “comfort care.” Thirty-three days and one more hospitalization later, on Dec. 14, 2007, Terence died.

Nearly five years later, I understand why Terence and I clung so fiercely to hope. We, with the encouragement of our oncologist, Dr. Flaherty, believed we had a good chance of extending a life Terence wasn’t done living, a life that until then he had packed with as much adventure and learning it could hold. We had met in China two decades earlier, married, had a son, adopted a daughter. He reinvented himself over and over as we traveled. Radio announcer. History professor. Real-estate appraiser. Gourmet-foods distributor. He loved Dixieland music and film noir. He played more than 15 musical instruments. He spoke six languages and was learning a seventh. A Chinese historian, he earned his Ph.D. in his 60s. Besides, our children were still in their teens. We had already gained years. We wanted more.

But all those folks in the hospital? The well-meaning, sincere doctors, nurses, and technicians who worked so hard ... why did they do what they did? Why did they continue to provide so much care if they really thought he was dying? And why, if all they could offer was “comfort care,” was the total bill for that penultimate four-day hospital stay $33,382.

Some time in June, the Supreme Court will decide whether or not the government has a right to demand that people buy health insurance. The decision will have huge consequences for the way we pay for health care in this country. But as my story shows, however the court rules, it won’t solve one of the core problems of our health-care system: the cost, both emotional and financial, of end-of-life care. From the 1970s to the 1990s, one study suggests, the cost of adding a single year of life for an individual over age 65 more than tripled, to $145,000 from $46,800—and health-care costs have been rising ever since. In 2008, researchers from Stanford and Wharton business schools studied dialysis patients and concluded that the average cost of one “quality” extra year of life was about $129,000.

Part of such spending near the end of life buys miraculous reprieves. Today both Dr. Flaherty and I believe that Terence’s care helped eke out an additional 17 months of life—enough time to celebrate our 20th wedding anniversary, move our son into his college dorm, and sit on a sunny balcony in southern Spain and watch the colors of the Mediterranean with our daughter. But did we buy too much? A growing body of research suggests that we did.

Two years after Terence’s death, I set out to try to figure out the costs of his care. For months I faxed off requests; interviewed doctors and pathologists; dissected the bills we, and our insurance companies, paid. The more I learned, the easier it was to see why 31 percent of health-care spending is on paperwork. I also discovered that, because of all this complexity, we knew almost nothing about what things cost. Perhaps most important, I discovered that in end-of-life care there are no true bystanders. The system masks all kinds of agendas—from the desire to live to the desire to turn a profit—that make the choices laid out before us infinitely more complex. Confusion, lack of coordination, and lack of oversight yield expensive overtreatment—but not necessarily better care.

health-costs-fe05-bennett-2ndary Terence Foley, with author and wife Amanda Bennett, fought his cancer for years. Courtesy of Amanda Bennett

In the controversy over “death panels” during the health-care-reform debates, the scary phrase suggested a harsh group of executioners ready to pull the plug on granny to save money. I began to think of it a different way: wouldn’t it have been great, as death became inevitable, to have had some help in figuring this all out?

I remember Terence had many CT scans. I might have guessed two dozen over the years. The actual number was 76, more than 10 a year for seven years. Were all of them useful and ordered for a good reason? I’m positive of that. Were all of them necessary? I’m just as sure not.

Shannon Brownlee, in her book Overtreated, argues that the increased use of scans has done little to improve the accuracy rate of diagnoses, which has remained about the same for more than a century. In fact, says Dr. Elliott Fisher, a professor at Dartmouth University’s Geisel School of Medicine who has studied end-of-life spending for nearly 30 years, even places that spend twice as much on treatments as others do no better at extending life—and may even make things worse. Indeed, as far back as 1998, two researchers, Jonathan Skinner and John Wennberg, wrote for the National Bureau of Economic Research (a private nonprofit research group) that as death approaches, neither high spending nor days in the hospital or intensive care seemed to have much to do with how long you lived.

Overtreatment, says palliative-care physician Ira Byock, author of the new book The Best Care Possible, is an unfortunate side effect of medical advances. “We have enormous scientific prowess and remarkable diagnostic and treatment,” he says, so that when you enter a hospital, you enter a system that “moves you quickly towards the next diagnosis and then the next diagnosis after that for the next component problem in a whole picture that few people will see. It’s a dysfunctional system that feels like a conveyor belt. We have a disease-treatment system rather than a health-care system caring for human beings.”

Meanwhile, say overtreatment critics, specialization is a two-edged sword: It yields fantastic knowledge, treatments, and often life-saving advances. But, says Byock, it can also lead doctors and patients to regard any reduction in treatment, or even accepting that patients are going to eventually die, as failure. There are amazing ways to combat disease and extend life, says Byock. “That’s all well and good. The problem is, we have yet to make even one person immortal.”

I saw this firsthand. As Terence got sicker, I spent hours on hold, trying to find the right doctor to handle each individual crisis. The cancer treatment? That was easy: our oncologist. The tumor in his throat? The specialist we were waiting for when Terence lay down on the floor. The intestinal side effects? Maybe a gastroenterologist. How about the skin lesions? A palliative-care specialist, or possibly a dermatologist. Each time I heard the long pause as someone consulted the appointment book for new patients. February? one suggested, in November. Or, Explain the problem to me and I’ll have the nurse call you back. Or, Who is referring you to this office? Things didn’t improve in the hospital, where a new set of doctors weighed in. It felt like I was the only person seeing Terence as a whole person instead of just a single piece of his body that needed attention.

Three years after Terence’s death, a hospice chaplain described for me hospice workers’ black humor about how the medical machine keeps on ordering tests and procedures on dying patients, treating the symptoms but ignoring the whole person: An orderly goes to the hospital morgue to retrieve a body. Instead, he finds a note that reads “Gone to X-ray.”

While this overtreatment results in part from the decentralization of the system, and in part from the good intentions of professionals who want to use every tool at their disposal to help, there is another reason for the duplication and overtreatment: money. Hospitals and doctors are paid only for what they do, not what they don’t do. That’s one reason the very ill and elderly get moved to hospitals from ordinary long-term-care facilities—hospital nursing care is simply reimbursed at a higher rate. “If I send a patient to the hospital, then I get paid for seven days [of the stay]. If I see them one time in the nursing home for a month, then I only get paid for one visit,” a medical director at a long-term-care facility in Miami told a 2010 study by the Henry J. Kaiser Family Foundation, which specializes in health-care research. When health-care providers have tried to address this problem, it has ended up costing them more to do less: in 2009, Dr. Brent James told the House Ways and Means committee about efforts at his Utah-based Intermountain Healthcare to reduce overlapping service; three quarters of the time, such cost-saving improvements led to “substantial financial penalties.”

cost-of-hope-bennett-book-cover ‘The Cost of Hope’ by Amanda Bennett. Random House. 240 p. $16.98

Figuring out how much all of this care will cost during the course of an illness is almost impossible. In many cases each individual provider bills for his or her own services, so a single procedure involving multiple professionals can result in dozens of separate bills. On top of that, how much you pay depends on the amount the insurance companies and doctors and hospitals agree on, and uninsured patients can often wind up paying much more than those with insurance. Even for insured patients, most policies do not cover everything, and a long-term illness can wipe out significant savings.

Dr. Renee Hsia, an assistant professor at University of California, San Francisco, and an emergency-room physician, confronts this every day. “I have patients asking me, ‘Doctor, how much will this cost me?’ and I can’t tell them,” she says. She researched the cost of a simple appendectomy in California and found that the price tag ranged from $1,500 to an extraordinary $183,000, with the midpoint at $33,000—and no obvious medical reason for the difference. She has had patients forgo important treatment because of the risk of bills they can’t predict. “I hate this. I hate this. I hate this,” says Hsia. “It doesn’t have to be this complicated.” In our case, until my colleague and I spent weeks analyzing bills, we didn’t realize that the same CT scan in the same hospital cost $776 or $2,586, depending on which insurance company was paying.

Beyond the monetary cost of this duplication and confusion is the emotional price. Dr. Joan Teno, a researcher from Brown University who studies end-of-life care, particularly among patients in the late stages of dementia, has found that the more intensive care a patient received, the more the family felt that the patient hadn’t been well cared for. In a recent study published in the Journal of the American Medical Association, nearly two thirds of family members could recall no end-of-life discussion at all, and those patients who never had such a discussion chose more-aggressive care—and had a worse quality of life—in their final weeks than the ones who did. What’s more, six months after their loved ones died, the bereaved caregivers of such patients “experienced worse quality of life, more regret, and were at a higher risk of developing a major depressive disorder,” the researchers from a group of Boston-area hospitals concluded.

For us, the additional emotional cost came at the very end: we never got a chance to say goodbye. It wasn’t until less than a week before Terence’s death, in the intensive-care unit as he was slipping in and out of a coma, that a young resident talked to me about our end-of-life choices and the fact that my husband was going to die.

We could have done better. We all should be doing better to adjust the focus on the needs of the patient, and not on the business model of the doctors, hospitals, and insurance companies. Whatever we call them—“death panels” is admittedly not the most useful term—more and more people are beginning to think that some intelligent and neutral counselor may be able to help guide our choices of when to treat—and when not to.

These “health coaches,” as they are coming to be known, may be nurses, hospice workers, doctors—a variety of professionals within the system who could help families with the difficult choices of reducing or stopping treatment, or focusing on quality of life instead of a cure. The “best care possible,” says Byock, is very individualized and reflects both medical choices and personal and emotional ones.

JoAnne Reifsnyder, president of the board of the Hospice and Palliative Nurses Association, believes that hospice care can provide that kind of guidance. “Our health-care system is really set up to cure the patient, and if we can’t cure, then folks sort of get confused about what do we do here. We have nothing in the toolbox, and that’s unacceptable,” she says. Patients need an advocate, she insists, who will “bring some additional clarity to the situation and make sure that the conversations happen that need to happen, and focus on symptom management, pain, anxiety, fear, worry, and desperation. It’s not rocket science, but it is hard work, and we need to have a culture change.”

Would Terence and I have picked hospice sooner had we had someone—or something like a panel—waiting there to help us work through our choices? I don’t know. But even knowing the price tag on the care he was getting might have helped him make choices that were consistent with the life he had lived. The seven-year bill for his care was $618,616. I believe he would have liked the chance to play a more active role in how we spent enough money to vaccinate 600,000 children in the developing world. That’s how he would have seen it.

This article is adapted from Amanda Bennett’s book, The Cost of Hope: A Memoir. Copyright © 2012 by Amanda Bennett. Published by Random House. All rights reserved.