In the medical world, where decisions invariably involve risk and uncertainty, two Beth Israel Deaconess Medical Center physicians note that experts generally base their recommendations on the outcome of death, which is "readily determined, easily quantified, concrete."
"There is more to life than death," Pamela Hartzband, MD, and Jerome Groopman, MD, write in the Sept. 12 edition of the New England Journal of Medicine. "Basing decisions on the outcome of death ignores vital dimensions of life that are not easily quantified."
For example, death has been the outcome at the bottom of two recent and controversial recommendations from the US Preventive Services Task Force involving the use of the PSA test to screen for prostate cancer among men and the value of mammography in women ages 40 to 49 to screen for breast cancer.
In each instance, Hartzband and Groopman note, Task Force members presented their conclusions with absolute certainty, declaring it was a "no-brainer" that the harm from the treatment in men and the screening in women outweighed any benefit.
But, the doctors' note, epidemiological data show a 75 percent decrease in the number of men presenting with advanced prostate cancer since the introduction of PSA screening. And mammography increases the likelihood of identifying breast cancers that are small enough to be treated with conservative therapies such as a lumpectomy, rather than a mastectomy and chemotherapy.
"How do we balance that possibility of a later life with prostate cancer marked by bone pain, pathological fractures and urinary obstruction against the more immediate symptoms of incontinence and impotence that often follow surgical or radiation treatment of early stage prostate cancer," Hartzband and Groopman ask.
"For a woman in her '40s, how do you balance the anxiety and discomfort of a biopsy for a false positive mammogram against the possible need for more extensive surgery, radiation or chemotherapy for a larger cancer detected later in life?
"How do we quantify the utility or impact" of these decisions on a man or woman's life? Hartzband and Groopman note expert groups typically use methods such as time tradeoff or the "standard gamble," that require people to forecast how they would feel in the future should they become ill or suffer complications of treatment.
"But these calculations are profoundly flawed. They require people to imagine themselves in a health state that they haven't experienced. Even we, as physicians who have cared for many patients with a particular condition, find in difficult to accurately imagine what our lives would be like if we were living with that condition ourselves."
Despite the severe flaws in how many expert groups calculate risk and benefit, their recommendations have a powerful impact on patients' care. In the wake of health reform, major policies could be crafted on the narrow criterion of death and using flawed methods of analysis.
"People have a remarkable capacity to adapt to … changes. Indeed, when the quality of life is assessed by patients themselves, there is no difference in assessments between men with prostate cancer who underwent prostatectomy and those who choose active surveillance. There is often as profound disconnect between the way healthy people view medical conditions and the way patients with these conditions view themselves."
Hartzband and Groopman suggest patients and physicians alike not ignore the real complexities and uncertainties of medical choices.
"Wrestling with these uncertainties requires nuanced and individualized judgment. It is neither ignorant nor irrational to question the wisdom of expert recommendations that are sweeping and generic."
In a podcast with the editors of the New England Journal of Medicine, Hartzband and Groopman propose a new way for individual patients to meaningfully weigh risk and benefit so as to arrive at the right decision about screening tests and treatment choices.
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