Maryann Napoli is the associate director of the Center for Medical Consumers, an advocacy organization in New York, NY.
How language misleads patients with cancer.
FIGURE Do your patients know how effective their chemotherapy regimens are? Do they know how researchers measure efficacy in cancer drug trials? I learned, but slowly, during many years as a consumer advocate with the Center for Medical Consumers. When the center opened its library in 1977, giving the public access to medical journals and textbooks was considered radical. Our aim was-and still is-informed decision making.
In my early years as the writer of the center's publication, HealthFacts, I reported on the response rate for the latest cancer drugs. I attended lectures for cancer patients in which oncologists used the term "response rate" without ever explaining what it meant. In those early years, I can't recall ever hearing or reading the definition of the term.
The average cancer patient might reasonably assume that an oncologist who cites a "20% response rate" means that the drug produced a remission in 20% of the people taking it. Some might even interpret this as evidence of cure. But response rate can simply refer to the percentage of patients in whom the tumor shrank, and this doesn't mean that they necessarily lived longer. The tumor doesn't have to disappear for the investigators to claim victory; it just has to shrink. (That tumor shrinkage predicts survival is an assumption that some researchers have repeatedly challenged.) The Food and Drug Administration defines "response" as reduction by at least 50% in all measurable tumors for 28 days or more. That definition might satisfy medical journal peer reviewers, but does it serve patients?
Many people relate their oncologist's advice in this way: "The chemo will improve my chances by x%." Usually, the oncologist is addressing something called "disease-free survival," another way success is defined in clinical trials. Disease-free survival describes the time between diagnosis and relapse. Contrary to how it may be portrayed to patients, this measurement has nothing to do with increased survival. "One can die at exactly the same time [as someone who did not take the drug], yet have a wonderful increase in 'disease-free survival,'" wrote Ralph Moss in Questioning Chemotherapy. Even the dramatic mortality reductions shown in some drug trials aren't always represented accurately. An improved five-year survival rate, for example, doesn't necessarily mean that the patient will have a normal life span.
Too often, chemotherapy is prescribed without any supporting evidence. Oncologist Lee Newcomer, senior vice president for health policy at United Healthcare, which insures 13.5 million Americans, told the Journal of the National Cancer Institute in 1995, "If I were to profile cancer of the pancreas in our health plans, I would probably find 25 different treatments being given. And I think any group of oncologists would admit that none of them is effective." If so, why did a New York teaching hospital bring in a psychiatrist for my friend's mother, who, after careful consideration, refused chemotherapy for pancreatic cancer? Since then, a new drug, gemcitabine (Gemzar), has been approved for pancreatic cancer, and it has been proven to increase survival-by six weeks.
Who but the oncology nurse is in a better position to observe drug-related toxicities for which the patient has been ill prepared? Yes, everyone knows about the nausea and hair loss, but what about the kidney and nerve damage? How can a patient make an informed decision about chemotherapy without considering quality of life? A 1998 review of the world's cancer trials published in the British Medical Journal found that quality of life is infrequently and inadequately measured.
No doubt many of you have begun arguing with me. "Cancer patients don't want to know about treatment efficacy," you might say. "People need hope." I suspect you're right; it's probably a minority of patients who search the Internet or go to the library. I've seen the fear in friends with cancer who never ask about supporting evidence. But for the few cancer patients who do, why not tell the truth? After all, it wasn't so long ago that people weren't even told the truth about having cancer. The rationale for with-holding the information might sound familiar: "They don't want to know."
© 2000 Lippincott Williams & Wilkins, Inc.