Allowing Fear to Dictate Cancer Treatment Decisions

 

FearLast week saw the publication of a study on ductal carcinoma in situ. It engendered a lot of mixed messages as I wrote about here.  Following on from that study, also last week (August 27, 2015) the New York Times published an Op-Ed piece from Dr. Lisa Rosenbaum entitled, Let Fear Guide Early Stage Breast-Cancer Decisions. A version of this same article was printed in the New York edition with a similar, but slightly different headline: Fear, a Useful Ally in Deciding Cancer Care. According to the Times, Dr. Rosenbaum is a cardiologist at Brigham and Women’s Hospital in Boston and a national correspondent for The New England Journal of Medicine.

The fact that Dr. Rosenbaum is a cardiologist rather than an oncologist in no way disqualifies her from having a valid opinion. I am not an oncologist either, yet I have not shied away from an opinion. That said, I think she is on the wrong track here and although well-meaning, she is muddying the waters by elevating emotion and fear and demoting the greater role of evidence and data in the formulation of treatment decisions.

Let me be very clear – I am NOT in any way wishing to diminish the emotional turmoil everyone goes through with a cancer diagnosis, and am NOT in any way wishing to trivialize the over-riding fear that many women (and men!) face with that diagnosis. It’s not that I think that the fear should be trivialized or ignored – it’s real and we have to deal with it for sure. 

But in a day and age when we are striving for as much evidence-base to our medicine as we can muster, surely we should value better and more data, and better evidence and facts, rather than emotions, to make our decisions. And that is why this opinion piece just does not strike the right chord with me. Granted, the answers are rarely clear-cut or black and white, but to suggest that fear ought to be guiding treatment decisions just strikes me as wrong.

In fact, the article has a lot more nuance than the title suggests, but in the end the assertion seems to be that any treatment avenue is right as long as it is what the patient wants. Surely this cannot and should not be how we make medical and treatment decisions.

Dr. Robert Buckman

A long time friend and colleague, Dr. Robert Buckman illustrated the nature of fear of cancer for me in a way that I will never forget. Rob (who sadly passed away unexpectedly about five years ago) was a superb communicator about cancer. I had the great privilege of sharing the stage with him on many occasions. I saw him firsthand play out the following scenario on several occasions.

He would paint the following picture: imagine that you were out shoveling snow in the winter and started to feel some mild chest pains.You go to the doctor and the doctor tells you that you have suffered a very mild heart attack.The doctor assures you that there has been no damage to your heart, that no treatment is necessary, and that with appropriate diet and exercise there was a 90-95% chance that this would cause you no further trouble for the rest of your life.

He then asked for a show of hands to ask from among the audience who was “mildly concerned”, “moderately concerned” or “very concerned”. In every audience that would be a small scattering of hands in the higher concern categories, but the vast majority of the audience would put up their hand to indicate that they were only “mildly concerned”.

He would then alter the scenario as follows. Now imagine you are out shoveling snow and started to feel the same mild chest pains, but this time you go to the doctor and the doctor tells you that you have a “cancer of the heart”.(Buckman always said this didn’t even exist just to make his point even more dramatic. In fact there are very rare cancers of the heart but the audience didn’t know that.) The doctor gives you the exact same prognosis, namely that you have a 90 to 95% chance that this will cause you no further trouble for the rest of your life and that it doesn’t require any active treatment. Just keep an eye on it the same as scenario 1.

This time, however, when asking for a show of hands as to who was “mildly concerned”, “moderately concerned” or “very concerned”, you can probably imagine how the audience’s perception of their risk changed. Now the demographics were completely opposite, namely that the vast majority said they were now “very concerned”.

I saw a Rob play this scenario game on at least three or four occasions, to audiences of very different sizes and very different makeups, but the end result was always the same. Even though it was easy to see exactly where he was going as he painted the second scenario, the audiences were helpless to be dismissive of the fear – even hypothetical fear; as soon as the word “cancer” was brought into the conversation every single audience registered a much greater degree of concern, because of the fear that cancer brings with it.

In a post on PSA screening for prostate cancer I wrote a while back that:

“If a cardiologist tells you that have a mild heart murmur, you most likely will not quake in fear or demand a heart valve repair surgery. You will just learn to live with it and most likely will even ignore it totally as long as it remains asymptomatic.

But if an oncologist tells you that you have a cancer, your first thought is just as likely to be “Oh my God, I’m going to die” and the second thought that likely follows close on is apt to be “How do we get rid of it?” Ignoring it because it won’t do you harm is just not in most people’s psyche, even if it all evidence says that is what you ought to do…”

This brings me back nicely to Dr. Rosenbaum, who is indeed is a cardiologist.  And I would posit for her the following hypothetical scenario:

Suppose you have a patient with a very strong family history of cardiovascular disease and death via heart attack. She comes to you and you diagnose a mild heart murmur. Imagine that you give your assurances that the heart murmur is of an by itself not a big danger, and that just keeping an eye on things was all that was required. Suppose instead that the fear of dying of a heart attack (as she had seen so many family members do) was so strong in this patient that she insisted on a much more invasive and far riskier open-heart surgery . I wonder if Dr. Rosenbaum would still take the position that any decision the patient makes, in order to quell that fear, is the right decision for them. Would she still allow the patient’s fear to guider her treatment recommendations?

David Ropiek, also in a New York Times Op-Ed piece about 3 years ago, told the story of a friend and a prostate cancer diagnosis in his article Cancer on the Brain. He ended the piece with these words:

“He’d decided to have radiation treatment to eliminate the cancerous cells, and was at peace with his decision, even though the treatment left him with at least one permanent side effect. He had to go to the rest room three times over two hours to urinate, something this 50-ish year-old man will have to deal with for the rest of his life — a price he was willing to pay not so much to cure a physical disease, but to cure the powerful fear he just couldn’t face.” [Emphasis added by me]

 

In her op-ed, Dr. Rosenberg opines that

“the key is to separate those emotions that may cloud judgment from those that clarify. Believing your risk of recurrence is high is quite different from understanding that it’s low, and nonetheless seeking treatment.”

If all of our treatment decisions are going to be based on the idea that emotions can “clarify” choices and then dictate treatment avenues, then we may as well throw all data and evidence out the window. It’s tantamount to a patient saying, ‘don’t confuse me with facts, I already have my own opinion’.

Without in any way denying the overriding fear that is attached to the word “cancer”, surely we should be trying to figure out more effective and compassionate ways to diminish the fear before making treatment decisions, rather than inserting the fear into those very decisions.

     
 
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Comments

Allowing Fear to Dictate Cancer Treatment Decisions — 1 Comment

  1. Good analysis Michael. Fear is a very powerful motivator that is easily exaggerated or based on irrational thoughts. Some people genuinely fear spiders even though they cannot (typically) harm them yet their phobia is very real to them. Evolutionarily, fear has a simple purpose, to help us avoid danger. Modern society has largely disconnected us from those primitive dangers but the emotion is so strong that it gloms onto other far less useful (for us) elements of life. Indeed, fear overcomes measure and can fool us (it can also be a source of cheap thrills). But fear can also debilitate us and suspend considered risk assessment.

    Removing emotion from diagnosis is undesirable (cold hearted physicians are unpopular and less effective), but it is important to communicate relative and absolute risk in a manner that provides tools for a person to rationalize and mitigate their fear. Unless the medical profession is able to achieve this, the idea of preventative medicine (not just in cancer) will not progress and, given the complexities of gene associations and disease, we had better work out ways to explain relative risk before we send the population running for the hills.

    In the best circumstances, life is too short to allow it to be numbed by fear.