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. That isn’t to say that non-experts cannot make a contribution to furthering progress. The challenge is that the availability of data provides many non-experts a false sense of certainty and absolute truth which is not necessarily true in medicine. We do have genomics, but it is in its infancy. We do have personalized testing, but it isn’t clear if knowing the results will be medically important.  When dealing with the complexity of the human body, nuance and ambiguity are prevalent.

More patients are emailing me requesting for CT scans or MRIs because the office visit copay is too expensive. They don’t feel that seeing a doctor, taking a detailed history or examination is worth it.

Yet, to counter the issues above it is doctors who can convince people to act in getting testing, treatments, and interventions when they don’t want to emotionally or are uncertain what to do. It is doctors who can encourage patients to get preventive testing and immunizations when faced with the overwhelming amount of information and clutter from the media, the internet, and friends. It is doctors who can tell patients when they must seek care and when they can safely skip. There is medical science and then there is everything else.

However, this is not where our country is headed. Too many believe that to lower costs and improve health outcomes, patients must make better decisions. Patients will do so if they have more financial responsibility and more cost transparency.

Show me the evidence because I don’t see it.

What I do see, unfortunately, is more cases like Scott Androes.

Davis Liu is a family physician who blogs at Saving Money and Surviving the Healthcare Crisis and is the author of The Thrifty Patient – Vital Insider Tips for Saving Money and Staying Healthy and Stay Healthy, Live Longer, Spend Wisely.

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  • http://www.thehappymd.com/ Dike Drummond MD

    Metastatic prostate cancer in a 52 year old is RARE. And, in reality, it would have taken a good primary care doctor a couple of visits to figure this one out. AND that is 100% better than Google in this particular case.

    Most of the time patients get better. That is a problem on those rare occasion when they bet on recovery and it doesn’t go that way. Dr. Google will give you a differential diagnosis – that list of all the things that could cause this symptom. It takes an experienced physician to follow the decision algorithm to the right answer when the cause is not common or benign.

    In my mind this is a simple example of death by “digital medicine”. The most common “App” people use to make healthcare decisions is Google. Google + Normal Human Behavior can occasionally result in tragedy as this case shows so well.

    Get a primary care doctor or NP or PA. Call THEM when you have a question. Get answers and a plan to address your issue. Google at your own risk.

    Dike
    Dike Drummond MD
    http://www.thehappymd.com

    • Eve Harris

      We can & should teach responsible use of online sources. It’s curious that the author claims rational patient behavior is the “underpinning” of consumer-oriented care; I’ve never encountered that assertion.

    • Homeless

      My primary care doctor won’t take to me on the phone.

      The one time I had something not common, my experienced physician failed to consider something uncommon while Dr. Google did an excellent job getting me to the appropriate specialist.

  • hadhag

    Lack of preventative, surgical and medical outcome revelation for doctors, hospitals, clinics, therapists and pharmaceuticals is the only obstacle facing the patient when making an informed clinical decision.

  • UncleStu

    I agree with Dr. Liu’s opinions in this article. I also agree with what he says about doctors’ knowledge and their responsibilities.
    “it is doctors who can convince people”
    “It is doctors who can tell patients”

    Nevertheless, what you hear from doctors is that they can’t spend more than 15 minutes with patients because the insurance companies won’t pay for more. Can doctors meet these responsibilities in 15 minutes? Of course not.

    There is plenty of blame to go around.

    The insurance companies carry a great deal of the blame. From the beginning, only the naive or uncaring expected them to act differently. Their only job is to make as much profit as possible – just read their articles of incorporation (they are public records).

    The doctors and the AMA share most of the blame. Doctors are among the hardest working people I ever met.
    Although they always advertise that they are primarily interested in the good of the patient, they show no interest in standing up for patients when policies are on the table. They could have raised hell at any point while serious policy issues were being decided. They could be doing so now. What did say, what do they say? Nothing.

    They say they have no time. That comment is based on seeing the number of patients that provide an income that they want to achieve, or have achieved in the past. They could see a few less patients and spend more time with each but they consciously decide to trade the well being of their patients for their income goals.It’s understandable, they are human, after all.

    That might be acceptable for Walmart but not for the practice of medicine.

    The responsibility to “first, do no harm” is the principal precept of medical ethics. All medical students are taught it. Part of that responsibility is to actively work toward government poilicies that do no harm to patients. As doctors they have very powerful voices that government listens to – certainly they have more power than ordinary citizens. Doctors may not be aware how much their patients value them, like them, and care about them. Doctors incomes and general well being will not suffer.

  • http://twitter.com/OurH_careSucks John Lynch

    Having “more skin in the game” is a theory put forth by financial types that’s proven to deter those with high-deductible health insurance plans from seeking medical care of all types – both appropriate and unnecessary. These green eye shade, bottom line types have no appreciation for the nuances of human behavior or of medical needs. By their logic, if it saves money, it’s working.

    Well, it doesn’t always work out that way, does it? And not just medically, as your case example illustrates. Even the financial consequences are complex, as it costs more to treat more advanced disease that’s missed when people forego appropriate screenings and care.

    Of course, the screening industry is itself a double-edged sword – leading as it does to much over-treatment of harmless conditions often better left alone (“pseudo-disease”). But your’s is an example not of screening, but of proper diagnosis. The patient’s logic – or illogic – in first denying his symptoms and then assuming the more benign cause of them – is part and parcel of the same financial “skin in the game” that will affect more and more Americans going forward.

    Educating the public to accept the nuances of their health and healthcare – and to fear treatment risks and weigh them more carefully before agreeing to invasive procedures – may be an unachievable goal given the pressures on doctors’ time and on our public health budgets.

    Wouldn’t it be nice if the insurance exchanges provided for under Obamacare could somehow embrace such an educational role by maybe offering lower premiums to those who participate in such a program? A guy can dream, can’t he?

    Oh, and congrats to Dr. Drummond for being secure enough to include NPs and PAs. Very classy.

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