Patients often have burden of deciding on treatment
By Jan Hoffman
NEW YORK TIMES NEWS SERVICE
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 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.
Just about out of options, the 39-year-old lawyer and mother of two toddlers faced an excruciating decision. Her last-ditch chemotherapy regimen seemed 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.
The catch? Gaines' chances of even surviving the procedure were uncertain.
"Who will decide?" she asked a surgeon from Los Angeles.
The doctor recited what has become the 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."
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.
Advertisement
As this new responsibility dawns on patients, some embrace it with a sense of pride and determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.
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.
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.
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 she would have obeyed.
Until the late 1960s, patients perceived doctors, then almost exclusively white men, as unassailable figures of authority. During the social and cultural upheaval that ushered in the women's rights, civil rights and consumers' rights movements, however, the paternalistic authority of the physician became deeply suspect.
And 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.
The drive 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 Gaines sought out, which then had no long-term experience behind it.
A patient's research does not have to be any more extensive than turning on the TV. 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 was the prompt: "Ask your doctor."
At the same time, medical science itself was widely perceived to be in a Renaissance period. Basic research in fields like biotechnology received deep bipartisan federal support. As the results continue to unfold, patients with major and minor health problems can choose from an array of options: some good, some bad, some redundant and some virtually miraculous.
Whether patients make a decision by themselves or at the behest of a doctor, the fact that the choice was theirs has become known among bioethicists as patient autonomy ? the right of governance over one's own body. The term is symbolic of the pendulum swing away from the paternalism common through the 1960s. Patients began seeking second and third opinions.
By the 1980s, opinion-seeking could even turn into doctor-shopping for specific procedures. Patients began suing doctors, an escalating conflict leading to, among other things, high malpractice premiums, congressional debates and, in the examining rooms, overcautious conversations between litigation-alert doctors and patients.
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. Baby boomers had gotten what they had asked for. And then some.
"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."
