Tuesday, September 29, 2009

Awash in Information, Patients Face a Lonely, Uncertain Road - New York Times (reposting)

Nothing Meg Gaines endured had prepared her for this moment. Not the six rounds of chemotherapy for ovarian cancer that had metastasized to her liver. Not the doctor who told her, after Ms. Gaines was prepped for surgery, that he could not operate: a last-minute scan revealed too many tumors. "Go home and think about the quality, not the quantity, of your days," he said.

Not the innumerable specialists whom Ms. Gaines, then 39 and the mother of two toddlers, had already mowed through in her terrified but unswerving effort to save her own life. Not the Internet research and clinical trial reports, all citing the grimmest of statistics. Not the fierce, frantic journey she made, leaving home in Wisconsin to visit cancer centers in Texas and California.

Now, just about out of options, Ms. Gaines faced an excruciating decision. Her last-ditch chemotherapy regimen did seem to be working. Three medical oncologists thought she should stick with it. But two surgical oncologists thought she should first try cryosurgery, injecting liquid nitrogen into the tumors to shrink as many as possible, and then following up with chemotherapy, allowing it to be more effective.

The catch? Ms. Gaines's chances of even surviving the procedure were uncertain.

"Who will decide?" she asked a surgeon from Los Angeles.

The doctor then recited what has become the maddening litany of medical correctness: "We're in the outer regions of medical knowledge," he said, "and none of us knows what you should do. So you have to make the decision, based on your values."

Ms. Gaines, bald, tumor-ridden and exhausted from chemotherapy, was reeling. "I'm not a doctor!" she shouted. "I'm a criminal defense lawyer! How am I supposed to know?"

This is the blessing and the burden of being a modern patient. A generation ago, patients argued for more information, more choice and more say about treatment. To a great extent, that is exactly what they have received: a superabundance of information, often several treatment options and the right to choose among them.

As this new responsibility dawns on patients, some embrace it with a sense of pride and furious determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.

Many prostate cancer patients can choose a passive treatment, like watchful waiting, or a more aggressive therapy, like radiation or surgery; each has differing risks and different patterns of side effects. Women with breast cancer often hear conflicting advice from the experts: lumpectomy or mastectomy? Some patients with heart disease can be told by one doctor that they need a bypass, by another that they need angioplasty and by a third that drugs would be just fine. Infertility patients face a blizzard of options.

Such quandaries do not apply only to life-rattling illnesses. Last summer, with the second joint of his left big toe painfully throbbing from gout, Carl Schneider, a law professor at the University of Michigan who had already consulted his internist and a rheumatologist, leaned wearily against a hospital wall as three other doctors argued over which regimen he should follow. One doctor handed him a 20-page Internet printout that cited gout treatment studies, none of them definitive.

"At 57, it's a little late to be starting medical school," Mr. Schneider remarked acidly. "But the burden still falls on me, having to pick among opinions."

The job of being a modern patient includes not only decision making, of course, but often coordinating doctors, medical records and procedures, as well as negotiating with insurance companies, who are often the ultimate arbiters over which treatment options will be covered.

As Ms. Gaines was being treated for cancer she had to wage such a battle. Before she had her diagnosis, her H.M.O. gynecologist laparoscopically removed what appeared to be a cyst on her ovary. But during the procedure, the cyst, which turned out to be a malignant tumor, burst, sending cancer cells into her abdomen. She then wanted to be treated by a specialist, but her insurance plan did not have a gynecological oncologist on its roster. So Ms. Gaines spent months fighting to transfer her care to an out-of-network doctor. Finally the insurers relented, but only after the specialist agreed to perform her surgery at the H.M.O.'s regional hospital, not his own.

Like many patients, Ms. Gaines did not turn to a primary care doctor to help coordinate her care or aid with decisions. Increasingly, that soul-healing doctor-patient relationship has become harder to sustain. Whipsawed by insurance plans, patients frequently switch physicians. Pressed by diminishing reimbursements, those doctors are building ever larger, more unwieldy practices, with less time for each patient.

The strain has left doctors themselves feeling exhausted, angry and heartbroken.

"My visits are almost ludicrous," said Dr. John Russo, an internist in West Orange, N.J., who sees 5,000 patients a year. "But economically you have to see so many more patients than you should, just to keep the lights on. You can't sit and talk and really get an entire history. So you do what you were taught as a resident: do more tests, don't spend more time with patients, getting to know them."

Ms. Gaines was out of time. She had to make a decision. She felt the chill of mortality and the full weight of nearly a year of drastic operations, blood clots, a punctured lung, chemotherapy, research, traveling, countless specialists and unanswerable questions bearing down on her.

"Who's in charge here?" she thought that night, wishing someone would just issue her marching orders. "Oh. I am."

More ...

http://www.nytimes.com/2005/08/14/health/14patient.html