Friday, September 16, 2011

Adverse effects

Flashback to summer of 2008. I'm looking forward to August 5--the day that I'll no longer be a faceless bureaucrat. The day that the US Preventive Services Task Force (USPSTF) will issue its new recommendations on screening for prostate cancer--recommendations I've labored on as a federal employee for the past year and a half.

For much of 2007 I combed the medical literature for every study I could find on the benefits and harms of prostate cancer screening. In November of that year I presented my findings to the USPSTF, a widely respected, independent panel of primary care experts. They discussed and debated what the evidence showed and then voted unanimously to draft new recommendations. I didn't get to vote, but it has been my job in 2008 to shepherd the draft statement and literature review through an intensive vetting process and to finalize both.

As August 5 approaches, my colleagues in public relations warn me that the last time the USPSTF said anything about prostate cancer screening, the phones started ringing off the hook. I'm not so secretly hoping that the same will happen this time.

And I'm not disappointed! After we release the statement, my normally placid government agency buzzes with excitement. In addition to sparking front-page stories in major national newspapers, the story brings our PR office "hits" from television, internet and radio outlets all over the country. With the volume of requests far exceeding what the Task Force's press-liaison person can handle, I offer to pitch in. I give two newspaper interviews and debate a respected urologist on a live radio call-in show. My colleagues cheer me on. I forward the radio clip to my friends and family.

The new recommendations surprise many people: They say that men age 75 and older should not be screened for prostate cancer.

Why not?

Because there's no convincing proof that the prostate-specific antigen (PSA) blood test--the one used to detect early prostate cancer--actually saves lives. Most abnormal PSA tests do not actually indicate cancer, and up to half of true prostate cancers detected with the test would never have caused health problems if they'd gone undetected.

On the other hand, there's lots of evidence that the PSA test causes physical and psychological damage. Abnormal tests lead to prostate biopsies, operations and other treatments whose adverse effects range from anxiety to surgical complications to death. For younger men with decades of life remaining, these adverse effects may be worth the potential benefits; in men aged 75 and older, they almost certainly are not.

I soon learn that cancer recommendations, like cancer screening tests, come with their own adverse effects.

Comments pour into health blogs and the editorial pages of my favorite newspapers, accusing the Task Force, and me personally, of "ageism" and "taking the first step toward government-sponsored euthanasia." The systematic review I worked so hard on is trashed as a "shoddy meta-analysis" (although it's neither shoddy nor a meta-analysis), and many elderly men and their spouses lambaste us for being in league with heartless insurance companies.

I realize that this report has hit a nerve--the one that distrusts the healthcare system and that lacks faith in government. Cancer inspires more fear and anxiety than many other diseases. People worry about being denied access to cancer care--even care that hurts more than it helps.

I'm most wounded by one comment, which says that those responsible for developing the guideline can't possibly understand what it's like to have, or to care for someone with, prostate cancer.

This one really pains me because I do understand.

I remember only too well a 75-year-old patient--I'll call him Kendall--whom I met during my residency training in Lancaster, Pennsylvania, an area best known as Amish country. Kendall wasn't Amish, yet he hadn't seen a doctor in decades. Before I met Kendall, he'd been hospitalized with bone pain and a PSA of over 5000 (more than 4 is considered suspicious) and had been diagnosed with advanced, metastatic prostate cancer.

Kendall responded dramatically to a course of hormone-deprivation therapy and returned home. As I learned over the course of our outpatient visits, he was a man of few words but big gestures. At the end of our time together, he'd stand and clasp my right hand tightly in both of his, saying, "See you in a few months, doc."

Later, when the cancer and its awful pain returned, and Kendall became weaker, he was one of my favorite home-visit patients.

The end came surprisingly quickly. A hospice nurse paged me with the news that Kendall was in the ER, disoriented and combative. I rushed over and tried to soothe him as we ran tests, hoping in vain to find something we could fix. Soon afterwards, he was transferred to an inpatient hospice. He died a few days later.

Would PSA testing and earlier detection have spared or prolonged Kendall's life? Given the aggressiveness of his cancer, I doubt it, but it's hard to know for sure. And I admit that Kendall often came to mind as I was working on a recommendation to stop PSA testing at age 75. If he'd ever bothered to visit a doctor, maybe he would have been one of the few men helped by such testing, rather than one of the many harmed. I'll never know.

My colleagues and I labored for months to present a thorough and accurate review that would help the USPSTF make sensible recommendations aimed at doing the most good and the least harm. We performed our work without considering healthcare costs or political fallout.

I'd hoped that August 5 would free me from being labeled a faceless bureaucrat. Ironically, it ended up tarring me as a heartless one.

Prostate cancer causes a lot of suffering--I know. In the face of that, it's tempting to try and detect it early, to "do something." But for now, unfortunately, our best science tells us that doing something to a man older than 75 is likely to do more harm than good.

For Kendall's sake and for my own--for I hope to be 75 myself one day--I wish it weren't that way.

I wish that on August 5, 2008, I'd had better news to share.

And I wish that everyone had understood that.

**

This piece was originally published in Pulse Magazine. I wrote it on my own time while employed at the Agency for Healthcare Research and Quality in the fall of 2008 and had hoped to submit it to the humanities feature of a major medical journal, such as JAMA's "A Piece of My Mind" or Annals of Internal Medicine's "On Being A Doctor." My superiors at the time declined to give me permission to do so.

2 comments:

  1. Doing the right thing can be very difficult at times. This was clearly one of them. Thanks for your work and efforts on this topic and you continue to be held in the highest regards by at lease some of us. My grandfather and uncle both died of prostate cancer prior to age 70. No PSA testing was available in those days, but had it been I doubt either would have benefited. Keep up the good work.

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  2. Well said, Dr. Lin (aka faceless and now heartless bureaucrat!)

    It seems that your dilemma is regrettably common in the 'early is better, more is more' rush-to-action circles. (We see the same controversy in revised screening mammography guidelines).

    A couple years ago, I read urologist Dr. Anthony Horan's book 'The Big Scare: The Business of Prostate Cancer' which you may be familiar with. His urology training focused on the wisdom of "non-intervention" for prostate issues instead of aggressive treatment for most men: "That was the conventional wisdom of the 1960s, and it is still true today. During my 30+ years as a board-certified urologist, I’ve seen quite a bit of suffering, much of it needless, in my opinion."

    New York Times columnist and prostate cancer patient Dana Jennings once wrote:

    “Most prostate cancers are lackadaisical — the fourth-class mail of their kind."

    Trouble is, once a patient hears the word "cancer", few are satisfied to sit back and just leave it there, no matter what the evidence-based stats say. And for-profit lobbyists have much to gain from scare tactics pushing early screening and treatment as the only preferable option.

    Thank you for this essay, and good luck to you.

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