Life of a patient

Date:   8/14/2005 8:49:23 AM ( 19 y ago)

Awash in Information, Patients Face a Lonely, Uncertain Road

By JAN HOFFMAN
Published: August 14, 2005
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.

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Nicole Bengiveno/ New York Times
Meg Gaines traveled to Texas and California looking for ways to treat her ovarian cancer.

BEING A PATIENT
Overwhelmed by Choices

Later articles in this series will look at patients' loss of dignity, the frustration of waiting and the difficulties of being sick and alone.


Patients Seek More Information

Getting Help: Patients Turn to Advocates, Support Groups and E-Mail, Too (August 14, 2005)

Forum: The Life of a Patient


Nicole Bengiveno/New York Times
SEEKING A MEASURE OF CONTROL
When Ira Rich learned he had kidney cancer, his wife, Joyce, studied records for six specialists, but in the end it was Mr. Rich's doctor whose referral mattered most.
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.



Ruby Washington/The New York Times
TEST SUBJECT
Rick Sommers signed up to test a drug for multiple sclerosis, only to hear of its failure several years later through a financial newscast.

BEING A PATIENT
Overwhelmed by Choices

Later articles in this series will look at patients' loss of dignity, the frustration of waiting and the difficulties of being sick and alone.


Patients Seek More Information

Getting Help: Patients Turn to Advocates, Support Groups and E-Mail, Too (August 14, 2005)

Forum: The Life of a Patient


Susan Farley for The New York Times
UNTANGLING THE WEB
Shauntel Anderson’s doctors helped her sift through medical Web sites as she studied treatment options for her heart ailment.
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."

When Doctor Knew Best

A generation ago, most of the diagnostic tests that monitored Ms. Gaines's cancer did not exist. Nor did the range of treatments. After the cancer had been found, most likely her primary care doctor or local oncologist would have told her what to do. And Ms. Gaines would have obeyed.

Until the late 1960's, patients perceived doctors, then almost exclusively white men, as unassailable figures of authority. They knew best. But during the social and cultural upheaval that ushered in the women's rights, civil rights and consumers' rights movements, the paternalistic authority of the physician became deeply suspect. Women fought to join the conversation. Challenging the mystification of medicine, the Boston Women's Health Book Collective published "Our Bodies, Ourselves," a landmark guide. Women changed conventional wisdom about the prevalence of hospital deliveries, hysterectomies and mastectomies.

With the introduction of Medicaid and Medicare in 1965, health care began to be seen as a right, not a privilege. Patients repositioned themselves as consumers of health care, entitled to as much information as possible. Support groups sought to empower patients with booklets and questions for doctors.

In response, many patients became insatiable consumers of medical information. In a New York Times/CBS News poll of 1,111 adults in February, 44 percent of patients who received a diagnosis sought additional information about their treatment from sources others than their physicians, including the Internet, friends and relatives, and other doctors.

Although the push has been on for patients to become more knowledgeable about their care, as they read unfiltered information, they can become more flustered. Shauntel Anderson, 24, a baby sitter in the Bronx who learned she had cardiac arrhythmia, had to choose between continuing her medication or being hospitalized for a procedure known as a catheter ablation.

"I did research for two or three weeks," Ms. Anderson said. "I went to 15 or 20 Web sites because I needed to know everything they were going to do to me. But the Web was messing me up: I got confused because I didn't understand it." Her cardiologists then suggested a few helpful sites. She chose the ablation.

The drive among patients to become better informed has been fueled, in part, by the array of options that often accompanies diagnoses, many so new that gold-standard treatments, backed up by randomized trials, have yet to emerge.

But hope is a potent elixir. Patients with good insurance or other financial resources have quickly learned how to find medical centers that could offer them the latest procedures, like the cryosurgery Ms. Gaines sought out, which had no long-term experience behind it at the time.
A patient's research does not have to be any more extensive than turning on the television. The eruption of pharmaceutical advertising has introduced millions to medical conditions that were once discussed only in the privacy of a consultation, and to the promises of new approved treatments. And inevitably following these promises is the prompt: "Ask your doctor."






 

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