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When PSA is done without consent--one patient's view
Part II Gary & Me on consent and PSAs plus some shoptalk
(The previous edition of The Active Surveillor covered the issue of patients undergoing PSAs without consent. Several of you shared your experience. Should such testing be OK in the interest of finding significant prostate cancers? Is it a violation of rights? Why not take this quick survey and share your thoughts: https://bit.ly/3MgvXRY Gary Schwitzer, an old friend and a true patient advocate and journalist, tells his tale below of nonconsenual PSA testing below.)
By Howard Wolinsky
Gary Schwitzer and I have a history. It’s the good kind.
I long admired his work as head of the health reporting team at CNN and later as founder and publisher of the late, great HealthNewsReview.org, which aimed to improve the quality of reporting on health in the media.
About 15 years ago, as a new faculty member in the graduate school at Northwestern University’s storied Medill School of Journalism. I attended Gary's talk on his pioneering work and his ideas on how medical/health reporters could serve readers better.
(Gary Schwitzer devotes his free time now to grandchild care, travel, nature photography (see above), and pickleball. Journalism’s and patient advocacy’s loss is pickleball’s gain as Gary is an ambassador for America’s fastest-growing sport.)
During his talk, he caught me by surprise when he called me out individually for my exposes on the American Medical Association as an investigative/medical reporter at the Chicago Sun-Times. My stories on financial and ethical breaches by the AMA leadership led to three CEOs—or was it four—being fired over the years along with seven top executives, including the president of the AMA’s for-profit subsidiary and the AMA general counsel.
(I was on fire in those days. Harvard Business School did a case study on my reporting and had me speak to business ethics classes there over five years. The Sun-Times nominated me twice for the Pulitzer Prize for this work. It led to my book with Sun-Times colleague Tom Brune, “The Serpent on the Staff: The Unhealthy Politics of the American Medical Association” (Putnam/Tarcher, 1993) and “Contain and Eliminate: The aMA’s Conspiracy to Destory Chiropractic (Sportelli, 2021).’)
Over the years, Gary spoke to my classes at Medill, and he got word out in his podcast in 2017 about how I—as a medical journalist—had tackled my low-risk prostate cancer, avoided treatment in 2010, and went on active surveillance. Gary promoted the concept of patients advocating for themselves.
In a previous edition of The Active Surveillor, I outlined the debate over whether doctors should perform prostate-specific antigen (PSA) blood-level testing as an indication of the possible presence of prostate cancer without consent.
without consent.(Gary on photo safari in Botswana.)
Gary, now 71 and retired, mainly pursues nature photography, travel, pickleball, and caring for his grandkids, tells the tale of a man who underwent PSA testing— without consent. It’s his PSA story in his own words:
An involuntary PSA
By Gary Schwitzer
More than 15 years ago, my primary care provider included PSA testing in a broader panel of blood work he ordered. He did this without consulting me. Worse, we had discussed my wishes to avoid PSA testing earlier than this. So he may have just slipped up. It may have been a busy day. Whatever.
I was upset. My PSA was OK. I would’ve been very upset if the test came back positive because it would have put me in the dilemma I wanted to avoid. I’d have the label. I’d have the cloud hanging over my head. All the pressure would be on more testing.
I knew the potential benefits and potential harms, and I didn’t want the test. It should never - ever - be done without informed consent following a complete discussion of the tradeoffs involved.
In the ‘90s, I researched and produced a shared decision-making video on prostate cancer screening for the Foundation for Informed Medical Decision Making (co-founded by Dr. Jack Wennberg) based at Dartmouth Medical School). So I knew the subject matter very well.
This episode led me to open another discussion with my primary care provider about prostate screening. In it, I questioned continued digital rectal exams. He agreed with me and stopped doing them.
It’s worth noting that in more recent years, I agreed to a PSA test. It was a different time in my life. I was older. I had grandkids. Circumstances had changed. Decision-making isn’t a one-time proposition. The tradeoffs hadn’t changed. I just viewed them differently at a different stage in my life.”
(Afternote: Gary’s latest PSA: 0.92. And no, he isn’t a vegetarian and does take meds to control his cholesterol.)
(Gary on photo safari in Botswana.)