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The obstacles patients face in making the right decisions

New York Times columnist Nicholas D. Kristof wrote a heartfelt piece “A Possibly Fatal Mistake” about his college roommate Scott Androes, who recently was diagnosed with metastatic prostate cancer. His story illustrates the problem with the current health care system.  It isn’t about the lack of health insurance. It’s about the obstacles all patients face in making the right decisions and the right treatment.

Something that will increasingly be harder with consumer driven health care.


Kristof lets his 52 year old friend, who is well-educated (graduate of Harvard, financial and pension consultant) and also was uninsured starting in December 2003, tell the story.

In 2011 I began having greater difficulty peeing. I didn’t go see the doctor because that would have been several hundred dollars out of pocket — just enough disincentive to get me to make a bad decision.

Early this year, I began seeing blood in my urine, and then I got scared. I Googled “blood in urine” and turned up several possible explanations. I remember sitting at my computer and thinking, “Well, I can afford the cost of an infection, but cancer would probably bust my bank and take everything in my I.R.A. So I’m just going to bet on this being an infection.”

I was extremely busy at work since it was peak tax season, so I figured I’d go after April 15. Then I developed a 102-degree fever and went to one of those urgent care clinics in a strip mall. (I didn’t have a regular physician and hadn’t been getting annual physicals.)

The doctor there gave me a diagnosis of prostate infection and prescribed antibiotics.

Androes, after being diagnosed with metastatic prostate cancer, like most of us, would reflect on what went wrong.

I read Nassim Taleb’s book “The Black Swan” and imbibed his idea that you should keep an eye out for low-probability events that have potentially big consequences, both positive and negative. You insure against the potentially negative ones, like prostate cancer.

So why didn’t I get physicals? Why didn’t I get P.S.A. tests? Why didn’t I get examined when I started having trouble urinating? Partly because of the traditional male delinquency about seeing doctors. I had no regular family doctor; typical bachelor guy behavior.

I had plenty of warning signs, and that’s why I feel like a damned fool. I would give anything to have gone to a doctor in, say, October 2011. It fills me with regret.

What can we learn about his experience and the future of our health care system?

Androes is highly educated. If anyone should understand the cost benefit analysis of money and health, it should be a pension consultant educated at Harvard. He had opportunities to seek care sooner, but chose not to. Understanding this psychology is important as it is the underpinning of consumer driven health care – patients will choose more rationally if they have more financial skin in the game. Yet all I continue to see is evidence to the contrary.

First, Androes had many obstacles and not all related to lack of health insurance. He didn’t choose to see a doctor when symptoms started in October 2011 because the cost didn’t seem worth it. This is where our common sense and experience falls short. We’ve all had experiences of an ache, pain, or symptom. Many go away on their own. Androes like many other patients have this “success” and filed it away. Plus, work is too busy or important to put on hold (another major problem with the economic crisis of 2008) and personal health takes a back seat. The problem is our previous success with other symptoms may not necessarily apply to the current symptom.

It isn’t clear if at that point he researched his symptoms with the always available Dr. Google. Unfortunately, like many patients he winged it hoping for the best. Had he thought about it some more, he might have realized that he never had urinary complaints prior to this episode. Having urinary problems are quite uncommon in young or middle-aged men.

So, Androes, like many others, he extrapolated his prior experience to his current situation, which may not have been appropriate.

Second, when he did have blood in the urine, Androes did consult Dr. Google. Dutifully, Dr. Google pulled up two possibilities. Infection or prostate cancer. Androes “bet” that it was infection. This is no different than “winging” it. Unlike the first episode of urinary problems, Androes clearly is informed about the possibility of cancer. Problem is he can’t afford a catastrophic illness like cancer either from a financial or time point of view.

Here is the reality. None of us can afford it. There is never a good time to be diagnosed with cancer or any other serious life-altering illness. Yet is behavior is common among many patients I see. Their job or their financial assets are more important than their health. Androes “chose” to go after April 15th, after tax season, when it was most convenient for him. Dr. Oz nearly made a similarly bad decision regarding his colonoscopy and colon cancer screening a few years ago and then again when he failed to follow-up as recommended for colon cancer surveillance. Part of the reason we all fall into this cognitive trap is that for the most part, our body does a good job in running despite what we eat, our sedentary lifestyle, and long hours of work.

The most important financial asset is your health. With good health you can always make more money, with more money you can’t buy good health.  So certainly, Androes had his less than optimal choices.

What about the health care system and doctors? Did we miss an opportunity?

Yes. It is possible there were two, though unclear if it would have made a difference in his case.

When Androes sought care with a doctor in urgent care and a urologist, he noted the former diagnosed him with a prostate infection and the latter did blood work. It isn’t clear whether either doctor did a rectal exam to feel the prostate. A patient with metastatic prostate cancer with a PSA of 1,1110 (normal range less than 4) should have a very abnormal prostate exam.

Had a prostate exam been done, either doctor had a very good chance in telling him he had prostate cancer prior to any confirmatory blood work. At that point, however, even with this knowledge it would have been too little and too late to alter the outcome or overall prognosis.

The second issue is whether the benefits of physical examinations or lab testing, like PSA, would have made a difference. Neither have been demonstrated to save lives. In other words, as a nation we might feel better that everyone gets an annual check-up or lab testing, but there is no scientific evidence that either help. Also, as noted previously, it isn’t clear patients will seek preventive care for the reasons above.

So, how does this one story, which sadly is repeated too often by different writers and involves different protagonists, predict our health care future?

It does in the following ways:

Common sense does not apply to health care. Patients may have symptoms they have never had before and erroneously assume based on prior experience, that this new problem is nothing to worry about. Denial is a powerful emotion and can cause inaction precisely when action is needed.

Second, when patients feel fine they don’t protect against low probability but high risk problems. Will people buy health insurance? Will they demand for preventive screening tests that save lives? Will they willingly get vaccinated against preventive illnesses? Increasingly we see more parents choosing not to have their children immunized and then nationally see many preventive illness, like pertussis, return again with significant consequences.

Third, there are many obstacles preventing good decision making. Whether higher deductibles, copays, or simply working too hard to focus on one’s health, people ignore their health until they have no choice or have symptoms. If Androes who had the good fortune of being educated at an elite Ivy League school made poor medical decisions, what are the implications for the rest of society? Patients should be more motivated to take charge of their health, yet it is likely the drive to consumer driven health care will make the nation’s overall health care worse, not better. A similar experiment was attempted in retirement planning with devastating outcomes for retirees.

Fourth, people are increasingly devaluing the important of expertise and experience with the increasingly ease and availability of information on the internet
Posted By Davis Liu, MD  At 11/19/2012 9:10:31 AM
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