Imagine the day, envisioned by health reformers, when research about which treatments work best at the most reasonable cost boils medical decision-making down to a science. Doctors tap relevant information into their computers—age, medical history, test results—and presto! they get the best course of action.
What's wrong with this picture? Granted, it's painted in overly simplified terms. But the people on the front lines do worry about what could be lost if treatment choices in a reformed health system rely too heavily on data about what works for the average person and ignore the individual patient: whether he's a construction worker or a music therapist, whether a risk-taker or risk-avoider, whether she's lived a long life or is just reaching her prime. Certainly, many medical decisions are no-brainers—you won't hear much argument over the removal of a near-bursting appendix. And evidence-based medicine may, indeed, cut down on the unnecessary tests and procedures doctors order to increase reimbursements or protect themselves from lawsuits. But physicians practicing cutting-edge medicine point out that their judgments and advice often draw as much on art as on science. Should a patient choose continuing seizures over surgery that risks the loss of her musical talents? How far should doctors go to treat a terminal disease in a young newlywed? Should a pregnant woman sacrifice one twin to improve the survival chances of the other?
Such discussions go on hourly at the University of Maryland Medical Center in Baltimore, a 705-bed hospital that handles more than 36,000 admissions a year. Doctors there, as at major hospitals around the country, are all-too-practiced in the agonizing treatment call. Cancer, in particular, leaves them guessing, seldom able to talk of a cure. "There are decision dilemmas involved in every treatment—it's not a multiple-choice test where there's always a correct answer," says Kevin Cullen, director of UMMC's Greenebaum Cancer Center. U.S. News spent several days this spring following doctors and patients at UMMC to see how treatment decisions are made when hard evidence is lacking.
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When 36-year-old Bart Simmons walked into the cancer center in April, he was praying there would be a correct answer for him—or, at the very least, that he would get a few extra years to spend with his new wife, Rhonda. His testicular cancer, initially treated with surgery and chemotherapy in 2001, had metastasized to the lymph nodes near his kidney. This was the second time his cancer had spread. Last year, he traveled to UMMC (thanks to arrangements made by a client affiliated with the hospital) to have a grapefruit-size tumor removed; no surgeons near his Vero Beach, Fla., home had dared attempt to remove the mass, which was entangled in two major blood vessels connected to the heart. For nearly a year since then, Simmons had been the picture of health; free of any signs of cancer, he worked full time at his construction job, attended church with his wife, and gathered regularly with friends at home Monday evenings.
Now, Simmons and his wife were hearing bad news from surgeon Nader Hanna: The two small lymph node metastases were endangering the only functioning kidney he had; the other had stopped working years ago, probably damaged during his first cancer surgery in Florida in 2001. Hanna presented the couple with their options: immediate surgery to remove the metastases, which would very likely result in the loss of his kidney and lifelong dialysis; or experimental chemotherapy, which could spare his kidney but might not be as effective as the surgery. "The treatment at this point is nonstandard," Hanna told Simmons and his wife. "The options are really complex. Do we treat or not? If we do treat, do we go for the technically challenging surgery? Or do we try chemotherapy, which may do nothing for him?"
Simmons, grateful for the honesty, decided to have the surgery after discussing chemotherapy with oncologist Edward Sausville. Both doctors were betting—though it was indeed a gamble—that surgery would give him the best shot at living longer. "Bart has a highly unusual testicular tumor" that transformed from a relatively benign teratoma to a more aggressive adenocarcinoma, says Sausville. "I've seen maybe three or four in my career."