Special Reports > A Patient's Journey
'Shared Decision-Making': Real or Just a Feel-Good Buzzword?
— Patient gets PSA test without his knowledge, then told to report for prostate biopsy
by Howard Wolinsky, Contributing Writer, MedPage Today November 4, 2018
"Henry" had seen his new university-based family doctor, whom he referred to as Doogie Howser, simply to refill a prescription for hypertension medications and found himself referred to the lab for some blood tests. In short order, he had a report show a prostate-specific antigen (PSA) level of 5 ng/mL from a test he didn't know he had taken, and orders to report for a prostate biopsy.
He was bewildered and frustrated.
Nobody had told Henry, 67, the purpose of PSA testing. He wasn't informed he was facing potential false positives and overtreatment along with risks down the line for impotence and urinary and bowel incontinence. Nobody told him the risks of biopsy, including bleeding, sepsis, hospitalization, and even death.
Anne Katz, PhD, a clinical nurse specialist in Winnipeg, was called in to help Henry. She described the case in an ASCO Connection blog post last May under the headline: "Shared Decision Making in PSA Screening: A Good Idea With Little Follow Through."
"Henry did not know that one of the blood tests was a PSA test. He had never had one before and his previous physician had not suggested this to the best of his recollection. He was confused and angry and did not know what to do. Should he have the biopsy? He wasn't sure what that meant. Did he have cancer and was he going to die? Why was this happening to him?" she wrote.
Katz cited research showing that 21% of men undergoing PSAs in 2010-2015 were only told the advantages of PSAs and not the downsides. They didn't know for the most part that they had a choice on whether to be screened, and they were unaware that there is uncertainty about whether PSA saves lives.
I spoke with Katz about how patients like Henry are left out of the loop in this era of "shared" decision-making.
She told me, "I think there are a number of points where shared decision-making needs to happen. It needs to start when a man is of an age where PSA screening is offered. Henry had a right to know that this test was recommended, was supported, or in reality whether it's questionable. So he had a right to a discussion [prior to testing]. 'This is what it means. This is what it measures. These are the ramifications.' So that's the first point for shared decision-making.
"Then, when his PSA comes back, he needs a discussion about, 'OK, your PSA was slightly above the normal range for men your age. Do you now want to have a biopsy? It is general practice that if your PSA is raised, we have a biopsy because we're looking for cancer. Are you in agreement to go for that referral to the urologist?' When the results of that biopsy come back, that man needs shared decision-making about what happens next: Active surveillance, surgery, radiation, cryotherapy, whatever is appropriate. Shared decision-making needs to happen at multiple points along that trajectory."
I feel Henry's pain. I feel in my own care for prostate cancer and type 2 diabetes to date that shared decision-making has played a minor role. I was being treated in the land where doctor still knows best and you have to fight to be heard and participate in decision-making.
In 2010, I jumped on the PSA/biopsy train with an accelerating PSA that reached 3.95 leading to an ambiguous biopsy and then a few months later a follow-up biopsy that confirmed a Gleason 6 in a single core.
The family doctor and urologist offered virtually nothing in the way of shared decision-making. I knew what a PSA was, but was not informed I had a choice nor was I aware of the potential risks. I blindly underwent the biopsies, aware of the potential of bleeding and vaguely of infection, but not of the potential of sepsis and hospitalization. I largely was following doctors' orders.
The first urologist I saw talked about treatment options, emphasizing prostatectomy and cryotherapy, not surprisingly, as these were the arrows in his quiver. He didn't mention active surveillance (AS). When I brought it up because I had done some homework, he dismissed it as something he didn't support.
I got a second opinion at a major Chicago medical center and have been on AS ever since. So I had a good dose of shared decision-making there. But I felt dismissed again when I brought up genomic testing. I was told: We knew I had prostate cancer, so I didn't need genetic testing of my tiny cancer (1 mm) core. I eventually moved on to a doctor I felt listened to me and wanted to share in decision-making.
Meanwhile, no urologist or radiologist ever mentioned to me the risks with gadolinium-based contrast agents for multiparametric MRIs. I have been exploring my options in anticipation of my urologist recommending another such scan as part of an AS program.
Thanks to being involved with colleagues organizing an Active Surveillance Patients International conference, I learned of the gadolinium issue and concerns about damage the heavy metal could cause. (Watch for upcoming posts.)
When such information is ignored and physicians don't admit what they don't know, shared decision-making is impossible.
For Katz, her duties in Manitoba include working with patients with cancer on intimacy issues. She counsels men diagnosed with prostate cancer on their options, from AS to radiation and radical prostatectomy.
She says she finds shared decision-making is not taking place because of brief doctor visits, remuneration issues, fears about malpractice, perceived low levels of health literacy, and doctors simply forgetting to address these issues.
Katz says she sees patients like Henry every week in her practice and she likely will continue to do so as shared decision-making remains more of a concept than a reality.