Wednesday, November 18, 2009

Cancer screening and obstacles to health care reform

This week's update of the U.S. Preventive Services Task Force's recommendations on screening for breast cancer have, to quote a headline from today's Washington Post article, stirred up a "tempest" of public reactions ranging from cautious praise to outright condemnation and patently uninformed accusations that the new recommendation against routine screening in women age 40 to 49 years was motivated by cost-saving considerations. A mere 15 months ago, a similar response to this Task Force's recommendation against screening men age 75 years and older for prostate cancer inspired me to write the piece below.


The message of the new recommendation was surprising to many people – that the blood test so commonly used to screen men for prostate cancer creates a situation in which uncertain benefits are balanced against certain harms. An unreliable screening test (the prostate-specific antigen, or PSA), combined with an unreliable confirmatory test (the biopsy), combined with the understandable desire of most men to remove any traces of cancer from their bodies, lead to unintended adverse effects ranging from anxiety to surgical complications to death. In some men between the ages of 50 to 74, these adverse effects may possibly be worth the potential benefits; in men aged 75 and older, they are almost certainly not.

Amid the subsequent avalanche of angry responses that played out in newspapers, blogs, and other public forums, the charge that hurt the most was that the guideline authors and the "faceless government bureaucrats" (including me) who supported their work couldn’t possibly understand what it was like to be or care for a patient suffering from prostate cancer. It hurt the most because I did. I remember only too well a patient – whom I’ll call Kendall – from my residency training in Lancaster, Pennsylvania, better known as the heart of the Amish Country. Although Kendall wasn’t Amish, he hadn’t seen a doctor in decades when he was hospitalized with bone pain at the age of 75 and found to have advanced, metastatic prostate cancer with a PSA level of more than 5000 (by comparison, a PSA of greater than 4 is commonly considered to be suspicious for prostate cancer).

By the time I met Kendall, however, he had responded dramatically to a course of palliative therapy and been discharged from hospice care. At his outpatient visits, he was a man of few words but big gestures. I remember how he always stood and clasped my right hand tightly in both of his as we were concluding an appointment. “See you in a few months, doc.” Later, as the cancer returned and he began taking strong pain medication, he became one of my favorite home visit patients.

For Kendall, the end came surprisingly quickly. During my 3rd year internal medicine rotation, I was paged by his hospice nurse with the news that he had become combative and disoriented. I met him in the ER and tried to soothe him as we did blood tests to confirm there was nothing we could fix. Sooner afterwards, he was transferred to an inpatient hospice, and died a few days later.

Could Kendall’s life have been extended by PSA testing? It’s hard to know. I tend to doubt it, given the aggressiveness of his cancer, but it’s possible. And I admit that while working on a recommendation that advocates for stopping testing at age 75, he came more than once to my mind. Supposedly guideline panels only consider benefits and harms to populations, not individuals. That statement couldn’t be more wrong. In my mind, thinking about populations means trying to maximize the benefits, and minimize the harms, for as many individuals as possible.

I probably should have been prepared for the outpouring of negative comments about the recommendation and those responsible for developing it, including me. Like screening tests and treatments, recommendations inevitably have adverse effects. Prostate cancer affects so many men in the U.S. that it naturally incites strong passions, with or without requisite scientific knowledge. But to the charge of being a faceless, cold-hearted bureaucrat without first-hand knowledge of the suffering this disease causes, I respond that it is possible to maintain one’s clinical perspective, and to care deeply about what happens to individual patients, while also making decisions that affect more than the patient in the room. Indeed, the lesson that I might have learned from Kendall’s story is that indiscriminate testing is always better – and that would have been the wrong lesson.