Common Complaint

[Bill]

Sunday, August 14, 2005

Patients forced to rely on their own resources

Left to research and coordinate their own care, many find modern medicine to be lonely, scary and overwhelming.

By JAN HOFFMAN

The New York Times

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 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 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, 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 in the tumors to shrink as many as possible, and then following up with chemotherapy, allowing it to be more effective.

The catch? Gaines' 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."

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?"

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.

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

As Gaines was being treated for cancer she had to wage such a battle. Before she had her diagnosis, her HMO 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 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 HMO's regional hospital, not his own.

Like many patients, 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.

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 surgeries, 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."

A generation ago, most of the diagnostic tests that monitored Gaines' 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 Gaines would have obeyed.

Until the late 1960s, 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 consumer-rights movements, the paternalistic authority of the physician became deeply suspect.

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.

The eruption of pharmaceutical advertising 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 was the prompt: "Ask your doctor."

By the 1980s, opinion-seeking could even turn into doctor-shopping for specific procedures.

Within the past decade, the shift in the doctor-patient conversation - from, "This is what's wrong with you, here's what to do," to "Here are your options, what do you want to do?" - became all but complete.

"People want to feel a part of their health care," said David Mechanic, a medical sociologist at Rutgers University. "But they don't want to be abandoned to making decisions all on their own. When a doctor says, 'Here are your options,' without offering expert help and judgment, that is a form of abandonment. "

In the 11 years since Rick Sommers received a diagnosis of multiple sclerosis, medical advancements have raised and dashed his hopes.

Sommers, 45, a former marathon runner and New York DJ, went through the shock that many patients experience, after two neurologists determined the cause of his numbness and tingling.

"The doctors are trying to map out exactly what is wrong with you," he said, "and they're giving it to you in sophisticated neurologic terms. It's like being in a foreign country: you don't speak the language, and you're trying to find directions."

In the years since the disease was diagnosed in him, multiple sclerosis patients have gained access to more information, more specialists and more treatment options. In addition to a phalanx of alternative remedies, at least five drugs that try to prevent exacerbations are on the market.

Sommers receives an electronic newsletter from the National Multiple Sclerosis Society, a patient support group, and sets his computer's stock watch for advisories on companies researching drugs.

Early detection for MS has improved, which means that more patients are seeking treatment. Clinics are filling rapidly. Sommers had to make appointments four months in advance.

"There are a lot more hoops to jump through before you can get to the doctor," he said. "I got more personal care 11 years ago."

[Fay A.]

"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."

In my experience it has been both. I am not a physician. I am a middle aged woman with a GED and a few college credits. Last night I cried because I felt overwhelmed. I've had headaches for several months now, and this week I've learned that I am at risk for a stroke if this continues. Last week there was an episode where the headache was horrific, my face and neck were beet red, I vomitted. Next day I woke up with many tiny bruises all over my face, especially under and around my eyes. It was terrible.

I can do this...I can learn the information that is available to me, and I can apply it to my situation. But I will always second guess everything because I am not a doctor and I did not go to medical school. And I am confidant that I have not always made the right choices or the best choices. But I've done the best I can with what I've had to work with.

Thank you, Bill, for sharing this. I would give a great deal if I did not have to do most of this on my own. If you have a good caregiver you are blessed.

[Leslie221]

Thanks for sharing that, Bill. Yes, we've all been there, haven't we? It's a real see-saw: I want to feel I have some control over what happens to me, but I sometimes feel I am being asked to "roll the dice" to decide my fate!

There is no one-size-fits-all approach to cancer and, unfortuately, the insurance industry has made it nearly impossible for anyone to get customized treatment.

However, I still lean toward thinking it's better to have more control than less. Here's a quote I read today:

The idea of taking charge of one's medical program is the single most common practice among survivors. It is the cornerstone of a strategic recovery plan. ~ Greg Anderson

Leslie

[gerbil runner]

Being in charge of one's medical journey is bad enough. The thing that scares me is how many people have had to say "no" to medical incompetence .

Record and research everything. My mother has been blessed with an oncologist who feels free to consult with other oncs. he respects, even though he himself is world-known. Several times, we've felt like my mom got the benefit of a second opinion without having to find it ourselves.

[Ann]

Bill, thanks for sharing this article with us. Dennis was fortunate to have an oncologist that was ready to try almost anything, within reason, to improve Dennis's quality of living and buy him more time. He would always explain all of the possible side effects and stress the bad, as well as the good. dennis never even seemed to take time to think about options. His almost instanteous reply was..."Go ahead...what do I have to lose?" I am just so thankful that he did have someone explaining all options to him.