Search for civility, shared decision-making in screening/health care discussions

In a comment left on my blog, Jamie Bearse, the chief operating officer of Project Zero – The Project to End Prostate Cancer, showed how quickly and deeply discussions about screening tests can devolve into ugly rhetoric. Bearse wrote:

“Your comments along with Otis Brawley’s vendetta against the PSA sentence men to die from prostate cancer testing. Shame on you. It’s important to know your score to make a proper diagnosis and decision of if and how to treat prostate cancer. Groups that create screening guidelines for cancer such as American Urological Association and National Comprehensive Cancer Network say get tested. In fact, Brawley is at odds with his own organization. ACS supports testing as well. Otis Brawley has killed more men by giving them an excuse to not be tested. Don’t follow that path just because of your own bad experience.”

I responded:


My comments policy states that I will delete comments that make personal attacks. You certainly did that with your statement that the chief medical officer of the American Cancer Society “has killed” and that he has “sentenced men to die.”

Nonetheless I have posted your comment because I think it’s important for other readers to see how some pro-screening rhetoric so quickly and completely devolves into ugliness.

YOU ARE WRONG when you say that Dr. Brawley “is at odds with his own organization.” In fact: “The American Cancer Society recommends that men make an informed decision with their doctor about whether to be tested for prostate cancer. Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment. The American Cancer Society believes that men should not be tested without learning about what we know and don’t know about the risks and possible benefits of testing and treatment.”

And that was the point of the blog post – a call for shared decision-making – something to which you say, “Shame on you.”

You are also apparently deliberately incomplete in your statement that “Groups that create screening guidelines…say get tested.” The US Preventive Services Task Force does not say that. The American College of Physicians does not say that. The American College of Preventive Medicine does not say that. The American Academy of Family Physicians does not say that.

So you are wrong on your facts, incomplete and imbalanced about your guidelines statement, and apparently have gone on record opposing shared decision-making. The trifecta.”

The rhetoric, the ugliness, the distortion of evidence that has taken place in politics seems to have bled over into health care discussions. Perhaps this is not surprising, given how politicized health care reform has become.

Recall how the concept of advanced directives for end-of-life care decisions – another shared decision-making issue – became a “death panels” rallying cry.

Recall how the evidence-based recommendations of the US Preventive Services Task Force on mammography became a “Throwing women under the bus” in some circles.

Earlier this summer, Emily Walker of MedPage Today covered the FDA advisory committee meeting at which the committee recommended removing the breast cancer indication for the drug Avastin . She wrote this first-hand account of some of the ugliness that took place:

“Christine Brunswick, the vice president of the National Breast Cancer Coalition and breast cancer survivor, took the mike and urged the panel to vote to withdraw the breast cancer indication, saying the data don’t show that it extends the lives of breast cancer patients, but do show it increases risk of harm, especially risk of hemorrhages.

“This decision can’t be driven by anecdotes,” she said. “It must be driven by science.”

Next, a woman got up to give her public presentation and started by saying, “I am disgusted to have to speak after that woman.” Her statement was met with applause.

But perhaps the most biting comment said by one of the patients at the hearing came the next day after every member on the panel — including the patient representative — voted against Avastin keeping its breast cancer indication. By day two, only a handful of patients remained, and they all stood as the vote was read, arms linked.

After the vote was read, they cried silently for a bit, but then began telling the panel about how the drug had worked for them.

One women yelled, “What a patient representative! You better hope your breast cancer doesn’t come back. You’re an embarrassment to all cancer survivors. ”

That was met by a sharp intake of breath, or maybe that was just me.

FDA hearings — and all government hearings for that matter — should be a chance for all sides to have their views heard. No well-intentioned person should be subjected to a public flogging, and in this case, have their status as a cancer survivor attacked.”

In response to that story, respected patient advocate Musa Mayer left an online comment:

“As a patient rep for (the FDA’s Oncologic Drugs Advisory Committee), I too have been publicly reviled for making evidence-based decisions that I felt would benefit the larger population of patients. It seems we’re expected to think only of immediate needs, and not public health consequences, or even of those not present who did not benefit or were harmed by the drug in question. It’s all about access, not science. Those of us like Chris, and the three others who bravely spoke out to support an evidence-based decisionmaking process at the Avastin hearing, have had to grow accustomed to receiving hate mail, hurled epithets intended to shame us, and even threats from those who claim to speak on behalf of patients. Alas, this is nothing new.”

Of course, the tone may have been set after Republican Congressman Joe Wilson yelled out “You lie!” at President Obama during his health care speech to Congress.

Many screening advocates create a false dichotomy – as if those who call for informed shared decision-making prior to screening are actually urging people NOT to be screened. So they frame their advocacy as “We want to save lives and you don’t.” That’s what the Project Zero exec did with his comment above. I, for one, would never urge a man NOT to be screened. I am not anti-screening. In fact – perhaps shocking revelation here – I have had the PSA test myself. But the screen-everybody advocates tout only the benefits of screening. Whereas the shared decision-making advocates believe that people should have a complete and thoughtful discussion of the facts about the limitations of screening, about the tradeoffs between benefits and harms, and about what you would do if you do have a positive or elevated test result.

If you don’t think about those things BEFORE you have the screening test, you may regret it after. These are issues of personal choice. So that choice shouldn’t be a spur-of-the-moment walk-up-at-the-state-fair decision.

That’s why we wrote what we wrote. No vendetta. No lack of caring. In fact, it is meant to convey a great deal of caring.

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Please note, comments are no longer published through this website. All previously made comments are still archived and available for viewing through select posts.


September 1, 2011 at 9:04 am

Bearse’s comment on your blog was shockingly inappropriate. It is surprising to me that an executive of any organization would allow themselves to comment so publicly in such an vitriolic and immature manner. I do hope Bearse realizes that it is well within Dr. Brawley’s rights to sue Jamie for libel. In fact, I hope he does. Perhaps then people like Bearse would think twice before calling people killers and rattling off misinformation.

Kate Clay

September 1, 2011 at 10:31 am

Gary: You are, as always, an eloquent proponent of what is sensible, rational, ethical. Those ofus who are passionate about supporting patients’ well-informed decisions thank you.

Elaine Schattner

September 1, 2011 at 5:25 pm

I don’t see things in black or white.
Plenty of writers who have argued against mammograms have used insulting and derogatory language when referring to women and doctors who support their careful use. (“emotional” “heads in sand” “confused” “worried” and other phrases filled the 2009 debate.) About the Avastin hearing, your (our?) colleague L. Husten on a Forbes blog threw out the idea of “muzzling” the breast cancer patients who spoke at the meeting, suggesting that he perceives them as sub-human. Now that’s foul language!
So it goes both ways. Please be fair.

Gary Schwitzer

September 1, 2011 at 5:40 pm

Are you defending the libelous comments left on my blog? Is that what you meant when you wrote, “Be fair.”?
Do you defend the way Musa Mayer says she’s been treated?
Do you have first-hand knowledge to rebut what Emily Walker of MedPage Today reported?
Who is arguing for black & white? Certainly not I, with my call for shared decision-making – hardly a black-and-white concept. You are the one who seems to paint things in black and white. It appears that you consistently react to anything anyone writes raising any issues about unknowns, uncertainties, or tradeoffs of benefits vs. harms involving any screening test.
You miss the point that I labored to make clear: it is simplistic to frame this as “for” or “against” screening of any type. I thought I made that quite clear. With this kind of framing, you are one of the people who promotes the false dichotomy I wrote about.
If you see “insulting or derogatory language,” I urge you to write about it. You cite one example from Larry Husten and you say that he’s my colleague. I often have written with admiration for Larry’s expertise on cardiovascular issues but it’s hard to call someone you’ve never met a “colleague.”
Be fair? To libelous comments?
Be fair about what?
Do you disagree with my call for shared decision-making on screening issues?
Please read what I wrote.
Please don’t read into it things that aren’t there.

Elaine Schattner

September 1, 2011 at 7:13 pm

I’m not defending libelous comments, anywhere.


September 2, 2011 at 6:30 am

You are correct in advocating for providing more information to the patients and helping them them make more informed decisions about PSA testing. I think it may also help the public understand the controversy better if we point out where most of the controversy around PSA testing arises from. It is less about the testing itself and more about what happens after the test and the risks and benefits of the potential treatments. The actual risks of the test are small, just the risk of a blood draw. The biopsy which may be necessary in those with an elevated PSA carries a 2% risk of complications. The treatments (surgery, radiation, hormone therapy etc.) carry a much higher risk of side effects. There is controversy whether the treatments are necessary to prolong or save lives in men with prostate cancer. Men with low stage cancer may die with rather than of the disease making treatment unnecessary in some cases. However once a man finds out if he has the disease and characterizes the type or severity of the cancer he has he can make a more informed decision with his doctor regarding further treatment or choose to observe the cancer. Avoiding all screening would prevent such an informed approach. It is to be noted that prostate cancer death rates in this country have decreased since the advent of PSA. Though one cannot draw a direct link between increased PSA screening and reduced death rates, the data provide food for thought.

Gary Schwitzer

September 2, 2011 at 11:59 am

Dr. Konety,
Thanks for your comment.
I want to counter one thing you wrote – that “the actual risks of the test are small.” You refer only to the risk of having the blood drawn. That, in my view, is an incomplete assessment of the potential harms involved. The potential harm that I refer to is what can happen to a man who jumps into prostate screening without thinking about the downstream treatment issues that you allude to. You characterize the controversy as arising AFTER the test – when the risks and benefits of potential treatments arise. I suggest that the harm can occur BEFORE the test if a man goes into the test without being fully informed. The discussion about “what will you do if you do have an elevated PSA” doesn’t have to wait until AFTER the test. You may have seen the Wild West cartoon that addresses this issue: “You can’t shoot first and ask questions later.”
I once interviewed a learned physician who had his first routine PSA after he passed age 50. When I met him he had had 6 consecutive elevated PSA tests and 6 consecutive negative biopsies. He wished he’d never had the first PSA test. But now he was labeled as “having something” and always wondering. That is a potential harm.
My post – as clear in the headline and in the body text – was about shared decision-making. I read in the MinnPost article about this issue that you said you weren’t sure of the content of the informational material given to men at the state fair screening van. ( ) That’s an important thing to know. An interesting little study years ago showed that “Preference regarding cancer screening and treatment is greatly affected by information about medical uncertainties.” ( ) And the DECISIONS study found that “most prostate cancer screening decisions did not meet criteria for shared decision making because subjects did not receive balanced discussions of decision consequences, had limited knowledge, and were not routinely asked for their preferences.” ( )
That is why I emphasize that truly informed, shared decision-making takes place BEFORE the test.

Musa Mayer

September 4, 2011 at 2:24 pm

Gary, this volatile level of public discourse on the issue of PSA screening has been problematic for at least a decade now. In 2001, Gavin Yamey and Michael Wilkes, editors of the Western Journal of Medicine, were leading a research project funded by the Centers for Disease Control and Prevention to teach physicians about prostate cancer screening. The two physicians wrote a letter to the editor of the San Francisco Chronicle, calling into question an article on mass PSA screening done at a sporting event. It had focused on S.F. Giants manager Dusty Baker’s story, saying, “According to Dr. James D. Brooks, a prostate-cancer specialist at Stanford, the PSA test that revealed Baker’s cancer ‘has made a world of difference’ in treating the disease because doctors have been able to catch the tumors early before they have spread.”
Instead of publishing their letter, the newspaper invited Yamey and Wilkes to write an op-ed piece which said, in part, “The trouble with screening for prostate cancer is that you can turn healthy men into ‘cancer victims.’ Many of these men would never, ever have known about their cancer. Diagnosing these men is extremely harmful to their health—all you’ve done is to create fear, without any evidence that treatment helps.”
Within hours, the publication of their article led to an email campaign initiated by prostate cancer charities, urologists and support organizations across the country. “Our email inboxes were jammed with accusations, abuse and threats,” the doctors later wrote in a BMJ article. “We were compared to Mengele, and accused of having the future deaths of hundreds of thousands of men on our hands. Our view, said one letter, was ‘geriatricide in the making.'” Many wished that Yamey and Wilkes would themselves get prostate cancer, and pressure was put on the University of California to fire the two doctors.
Apparently, this disturbing level of discourse isn’t a peculiarly American phenomenon, either. It happened also in Australia under similar circumstances, according to this BMJ article:
We ought to be asking ourselves why questioning the screening orthodoxy or the touted but marginal benefits of new treatments in the face of significant harms leads to this level of anger.
I suspect these emotions derive from the sheer terror that cancer arouses in so many of us. Would that there were simple answers and comforting certainties to offer that were based on evidence! But wishing will not make them so. Neither will yelling, insults and threats.

DH Newman

September 6, 2011 at 1:29 pm

The issue of screening PSA has been complicated by many things, including hype, advocacy, fear, medico-legal pressures, and on and on. The question is rather simply stated: are men who have PSA screening tests less likely to die over time than men who do not? This question is best answered by trials randomly assigning men to either have or not have PSA screening. This is the most scientific way to answer this question. After nearly 400,000 men (a gargantuan number) have been enrolled in studies, the answer is in. See is at
As a physician and a man, I wish it had worked. But it did not. This issue has, on a scientific level, been put to rest. What remains is more of the above – hype, advocacy, fear, legal pressure, etc.