To these questions about surgery put to a group of men, “Would you do it again?” and “Would you recommend it to others?”, their answer was “Yes”. The reliability of studies depicting men’s satisfaction with surgery for prostate cancer has been called into question.
A recent meeting of urologists was told these studies are naive and should not be taken at face value.
According to leading urologist Claus Roehrborn, professor and chairman of the department of urology at the University of Texas, the studies underestimate the level of regret men feel afterwards.
He says standard questionnaires about “decisional regret” are superficial and fail to capture the complexity of men’s response to the surgery and the distressing effects it can have on their lives.
He told the Urological Society of Australia and New Zealand’s annual scientific meeting on the Gold Coast, in April, that these questionnaires need to be rethought.
His talk, which also covered the trend of overburdening of men with treatment options and expecting them to make an informed decision, became a talking point of the meeting.
A surgeon himself, he said researching the talk had taken him way beyond his comfort zone. Rather than presenting a packaged solution to these issues, he would just explore them and share some insights he’d gleaned.
Decisional regret like ‘buyer’s remorse’
Professor Roehrborn told The Australian Financial Review that decisional regret in medicine is similar to what is commonly called “buyers’ remorse” or sometimes “post-purchase depression”.
Despite the impact a radical prostatectomy can have on continence and potency, he says some studies have found decisional regret is as low as 4 per cent.
“How can this be?” he asks.
“A year after a radical prostatectomy, 15 per cent of men will still be leaking urine in some way, and of those who enjoyed full potency before the operation, only one in six will have resumed sexual activity.”
Despite this, when men are asked if they regret the decision to have the surgery, most say it was a good decision. When asked if they feel the surgery may have harmed them, they say no.
To both the questions “Would you do it again?” and “Would you recommend it to others?” they answer yes.
“On the surface it looks like the world is in order,” says Professor Roehrborn. “We do the treatments and the patients understand there are consequences, and in the end, they say it’s all good and they made the right decision.”
But the studies make no allowance for a particular form of mental stress that influences the responses.
He says many of these men are experiencing “cognitive dissonance”, which is the intolerable mental discomfort of holding two contradictory ideas in the mind at the same time.
The discrepancy can be unbearable and often leads them to rectify the dissonance by changing one of the two so they can better manage.
These men have had an irreversible operation that impacts their masculinity; they know they are suffering the consequences but they answer questionnaires in a way that ignores the suffering.
Professor Roehrborn describes this as a collision between beliefs and actions in which they typically create justifications to keep their world in order.
He says cognitive dissonance is easily illustrated with smokers who develop coping mechanisms to deal with the graphic images on cigarette packs.
They know smoking is bad but they justify it, saying they need it because it calms them, and as times are tough, it’s the right decision to smoke.
Then they go further and create a plausible construct to support their actions. They may think up a conspiracy. Perhaps the harms of smoking have been overstated to encourage them to spend their money on expensive smoking cessation medication instead.
“These coping mechanisms can be so extreme that patients are quite incapable of differentiating between their beliefs and reality,” says Professor Roehrborn.
“With prostate surgery, it would be extremely difficult for a man a year later to say ‘Well, since I leak urine and can’t have sex any more, I would never do that again’.”
“It would be an admission that he made the made a wrong decision and this would collide with the dissonance concept.”
“So nothing is said and urologists pat themselves on the back believing their patients have no regrets. But it’s a hopeless oversimplification because it’s just a reflection of men coping with cognitive dissonance.”
Denial is a component of this. Denial is when a smoker denies smoking is that bad in his case. Cognitive dissonance is when he creates a construct to support this position.
Why tamper with defences?
But when a man is already living with side-effects of prostate surgery, why tamper with his defences? Why strip him of his belief and force him to a frank admission of regret?
Professor Roehrborn says while there may be personal value in sustaining the belief, there’s a deeper problem.
Men diagnosed with localised prostate cancer have several options, some of which don’t cause serious side-effects. Were such men to read reports of 96 per cent satisfaction rate after surgery, they might feel that’s a better choice, when it might not be.
Professor Roehrborn also has much to say about the trend of giving men with localised prostate cancer so many options it is almost overwhelming.
“Choice is good, but too much can lead to paralysis. The human mind can only wrap around a limited number of choices and make intelligent decisions.”
With prostate cancer, he says, when men are faced with many options they often tend not to make a choice. The range of options raises the possibility that there may be a perfect fit and if they could only find it, they’d be happy with the decision and have no regrets. As their expectations that this is possible escalate, so does their difficulty in making a choice.It can be a time of anxiety and uncertainty.
Professor Roehrborn says many consult him for a second opinion and the conversation usually goes as follows:
Patient: “I’ve been told about all these options and their consequences.”
Roehrborn: “So what have you decided?”
Patient: “I haven’t. I’m here to ask what you think.”
Laundry list of treatment options
He says the patient’s doctor has usually given him a laundry list of treatment options and told him to go home and think about these options and make a decision.
“I believe the doctor has only done half the job. Of course patients need to participate in decision making, but it can go too far.”
Once doctors were patriarchal and made the decisions. Now the pendulum has over-swung and they’ve given patients the autonomy for decision making.
“They’re saying ‘We will explain the options but you must decide.’ Some won’t even help with the decision – which is not in accordance with the Hippocratic Oath.”
He says the latest thinking is that doctors should give patients the right to transfer the autonomy back. A man may be fully capable in all other regards, but may not feel capable of making a decision about his prostate cancer.
Professor Roehrborn believes full autonomy for patients is an impossibility because some of the decisions and their ramifications are too complicated. The fact that many men turn to unreliable sources of information, such as friends and the internet, doesn’t help.