Juan Williams and our reptilian brains

The furor over Juan Williams remarks and his subsequent dismissal from NPR is finally settling down. I have given the events some thought and being the contrarian that I am, I thought I should weigh in with a contrarian opinion. I think I understand the genesis of  of Mr. Williams thoughts and comments regarding his fears. Oddly enough, I suspect that the response of the President of NPR is likely to be explained by the same mechanism which generated Mr. Williams remarks.

Because of my interest in how doctors and patients perceive and respond to risk, I have delved into the works of a number of authors who publish primarily outside the realm of medicine and health care. Two particular works, "Risk" by Dan Gardner, and "How we Decide" by Jonas Lehrer deserve highlighting. Although each book has a different focus, both highlight elements of the human brain and human decision making which are extremely relevant to the Juan Williams brouhaha.

Human brains are millions of years in the making and our cognitive functions are built on a platform which is not particularly linear or rational. The rational and deliberate part of our brains is only part of the story. The more ancient and sometime referred to "reptilian" brain operates in each of us and its functioning and continues to serve vital functions in our day to day existence. We care constantly placed in positions where we must make judgments. Some of those judgments require thoughtful deliberation and weighing of all the data. Some require a quick assessment and reliance on gut feeling to decide.

In Jonas Lehrer 's book, he describes the decision of a radar operator in the Persian Gulf who sees echoes on a screen and is forced to make a rapid decision as to whether they represent a friendly A6 attack fighter or attacking missile. He has little time to weigh all the data, only time to look at the echoes and intuitively make a decision. He decides that the echoes represent a hostile missile and correctly so. He accomplishes the feat, using a phylogenetically ancient system, common to  gazelles at the watering hole, sensing of a cheetah is nearby. This system can process lots of information without us actually being consciously aware of all of it. This has been referred to as system 1 or "gut".

System two is the more deliberative system. Gardner refers to this as "head". Head is more plodding and methodical. Head is data driven and rational. Some problems appear best addressed with the rational plodding approach while others are more amenable to intuition (think of Malcolm Gladwell and "Blink"). Most decisions require input from both systems.

When Juan Williams remarked on the fear he sensed when he saw someone in Muslim garb on a plane he was boarding, he was simply recognizing that system 1 was activated. The reptilian portion of his brain was firing off in a similar pattern as our ancestors when they came down to the watering hole and their hair stood up on end if they sensed a predator near by. We all have those moments, perhaps walking down on dark street or entering into a neighborhood where you do not know anyone and perhaps people look different from you. We can't help but have these feelings. They are system 1 talking to us. We can not turn this off, nor apparently should we want to. System 1 is an integral part of our decision making apparatus.  Lehrer descries the fate on one patient who post brain surgery became essentially devoid of emotion and also lost his ability to make decisions.

We are not entirely rational creatures and it is crazy for someone to be disciplined for acknowledging that he has fears that he cannot fully explain. We all have fears which derive from system 1 and all we can expect is that we do not act rashly on all of them. I suspect it is in the long run desirable to reflect upon them and share them with others. Juan Williams was open and honest about his fears but did not act upon them. I suspect that if we scanned Vivian Shiller's brain and saw the predominant structures activated when she decided to Fire Juan Williams, we would find she was driven to react mal-adaptively more by gut than head. Her reptilian brain also got her in trouble.   

The Ruckus over the RUC

Perhaps the cat is out of the bag with the publication of a front page story in the WSJ on the Relative Value Scale Update Committee, other wise known as the RUC. This entity, conceived after the Resource based relative value scale (RBRVS - aka real bad reimbursement very soon), to set fees for Medicare. The payment framework was rapidly adopted by third party insurers and the RUC mistakes quickly became everyone's mistakes. It has functioned at least in part because it has functioned in the shadows. The public was clueless as were most physicians. I gave a talk at a state medical meeting three years ago on health care economics and asked for hands of who knew what the RUC was. Less than 10% of the audience raised their hands.

Thongs are changing as evidenced by the front page WSJ story (which spills over to an entire page on A16). The WSJ article shows the photo and picture of the head of the RUC. I strongly suspect that she will be getting additional calls. I also suspect that the names of the panel members will begin to leak out.THe names are not posted on the AMA website Lots of prying eyes will begin to scrutinize the methods and the math. It will not be pretty.

 (From physician Panel Tilts Medicare Fees - WSJ October 27, 2010 http://online.wsj.com/article/SB10001424052748704657304575540440173772102.html?mod=ITP_pageone_0

 So here you have it, pricing by committee which perverts the allocation of resources in one sixth of the entire economy. How anyone with any conception of the role of pricing in the allocation of resources could think this could work is beyond me. It is ironic that the William Hsaio, the Harvard Professor whose work served as the intellectual basis for seemed to be surprised by how this has all turned out. He argued that you cannot turn to the physicians who will be doing and billing for the services to derive the information needed to price them accurately.  They will just game the system. Well duh!

 However, who can you turn to to derive this information? It is a fundamental problem with administratively set pricing structures. It will also dog the newly constituted Medicare Payment Advisory Board which will be charged to:

Establish an Independent Payment Advisory Board comprised of 15 members to submit legislative proposals containing recommendations to reduce the per capita rate of growth in Medicare spending if spending exceeds a target growth rate. Beginning April 2013, require the Chief Actuary of CMS to project whether Medicare per capita spending exceeds the average of CPI-U and CPI-M, based on a five year period ending that year. If so, beginning January 15, 2014, the Board will submit recommendations to achieve reductions in Medicare spending. Beginning January 2018, the target is modified such that the board submits recommendations if Medicare per capita spending exceeds GDP per capita plus one percent. The Board will submit proposals to the President and Congress for immediate consideration. The Board is prohibited from submitting proposals that would ration care, increase revenues or change benefits, eligibility or Medicare beneficiary cost sharing (including Parts A and B premiums), or would result in a change in the beneficiary premium percentage or low-income subsidies under Part D. Hospitals and hospices (through 2019) and clinical labs (for one year) will not be subject to cost reductions proposed by the Board. The Board must also submit recommendations every other year to slow the growth in national health expenditures while preserving quality of care by January 1, 2015. (from Focus on Health Reform - http://www.kff.org/healthreform/upload/8061.pdf)

So, how are they going to this any better than the RUC? Who are they going to turn to to get timely and accurate information upon which to base their pricing information? How are they going to adapt to change and innovation? How will this group of politically appointed and motivated individuals assign value to the billions of encounters that patients have with those who provide an almost infinite variety of medical services? Very badly I suspect.

Magical vs. Methodical

I am an optimist, perhaps bordering on being delusional at time. I am methodical and systematic in how I approach problems and I assume that this is a characteristic shared by my colleagues and even my patients. I am constantly reminded that this assumption is simply wrong. Nevertheless, I hold on to this belief system. I am not sure why.

Today, I was pulled in to see a patient by one of the PA's I was supervising. This patient was undergoing chronic outpatient treatment for a distinct condition under the supervision of another physician. The patient was actually visiting from well out of town. He was a very sophisticated professional who had achieved much and was highly regarding within his own field (non-medical - he was a chef). He was availing himself of treatment not available in his home community thousands of miles away.

Here is the bizarre part of the story. He was referred to our office for a distinct difficult and chronic problem which ad already been exhaustively evaluated and treated at one of the most famous integrated health care entities in the world. He had undergone literally months of diagnostic evaluations and countless treatment approaches at the hands of some of the most intelligent and diligent physicians anywhere. So, when he comes to visit our fair city, someone has the brilliant idea of garnering a 15 minute slot with my PA for a second opinion. He comes with no records and basically no recollection of what had been done, diagnostically or therapeutically.  We briefly played a variant of medical 20 questions... Did the medicine sound like??? Did the test sound like??? until I realized that this was going to go no where.

I guess I assume that patients and referring physicians have some conception of what it takes to evaluate and treat people with complicated medical problems. I have to say I was tempted to ask this patient how he would react if I came to him saying that I had this great meal and I would like for him to recreate it immediately. However, I remembered only that it had a main course, it contained meat, and involved a sauce.

I perhaps should expect such lack of insight from the patient but what about the referring physician? Shouldn't someone with medical school and residency training in almost anything understand that referring a patient under these circumstances is crazy. Perhaps they thought we would be able to cast a spell upon this gentleman and purge the evil spirits. Perhaps it did not occur to whomever initiated the endeavor that medical problems are best solved by methodically analyzing the data, creating a differential diagnosis, and weighing options. Most likely no one gave it a moments thought beyond the impulse to call and secure an appointment even if it was not with anyone who was in a position solve their problem.

The magical thinking perspective is the default mode. When we ask patients to secure records from previous evaluations, they view it as an imposition. At least part of the reason for this attitude is some realize many of the records contain little or no actual information. When we ask them to provide information in the form of questionnaires, they follow the principle of opening the door wide enough only to get through. They appear to have a hard time conceiving that the information provided might actually be useful. To some degree the medical profession historically has fostered the belief that physicians power over disease bordered on the magical. Current TV drama tends to underscore very short time lines and ad hoc functioning of the medical profession. Heroes in this world require little time or data to solve issues, relying instead on intuition, gut, and impulsive decision making skills. It may make great TV but it is not the best way to deal with most medical problems.

Health care reform without HR3962

The WSJ published a piece by Avery Johnson entitled: "In Treating Cancer, Insurer Tries New Way to Pay Docs" in today's paper. http://online.wsj.com/article/SB10001424052702303550904575562440652409512.html?mod=ITP_marketplace_0#articleTabs%3Darticle

While many of the comments focus on the elements of the piece suggesting that doctors may push chemotherapy because of a financial incentive, I think the most interesting observations can be summarized in the following statements:

The program, which the insurer plans to announce Wednesday, attempts to address potential overuse of expensive cancer drugs by eliminating any incentive for doctors to choose a drug based on profit. As a result, oncologists will be reimbursed at cost for whatever drugs they prescribe and receive a separate payment covering their services..... Many cancer drugs are infused by doctors in their offices, and historically doctors have purchased the drugs and billed insurers for their cost, plus a profit margin of around 15%, says Lee Newcomer, UnitedHealth's vice president of oncology......UnitedHealth estimates that drugs account for 65% of an oncologist's income.

65% of all oncologists income estimated as coming from infusion of drugs. I am not sure where these numbers come from but if they are true, they raise all sorts of issues. First, any activity which eliminates 65% of income from a particular segment of a health care providers is likely to have some nasty consequences. I don't know what they might be but there will likely be some major casualties, both in terms of individual physicians and institutional. I would venture to guess that the major investments that health care concerns made to develop large and capital intensive cancer centers could look bad as their planned profit centers become cost centers.

If 65% of oncologist incomes comes from mark ups on drugs, it highlights the madness associated with the role of physicians in patient care and defining where physicians actually bring value to patients. Gaming the margins on drugs has allowed oncology to delivery cutting edge care and reward oncologists for the role they play. Everyone has recognized that the fee structure associated with the cognitive and management work in oncology (and medicine in general) is not adequate. Many sub specialty have avoided taking on the battle of pricing their truly valuable cognitive services appropriately as long as they have they have their own proprietary technical billing gimmick which they can milk.

Oncology and Rheumatology have their infusion centers. GI has colonscopy, ENT has sinus surgery, Dermatology has Mohs surgery, Cardiology had stent placement, and Allergy has skin tests and allergy shots. Ophthalmology had cataracts but their fate should serve as a lesson for others who bet the ranch on becoming dependent on a few narrow cash cows.  The question is are these lucrative elements of practice the things which really bring value to patients? Not likely. In my estimation docs are paid poorly for doing the really difficult things which make the big difference in patients with chronic disease burdens. For that reason there are few physicians who want to to take on the long term responsibility for care of people with chronic diseases. Everyone in medicine knows this.

However, as the cash cows get identified and picked off by either Medicare or private insurers, the landscape will change. Some specialists will simply take refuge in the world of aesthetics. It is not proprietary and is open to basically anyone who can take a weekend course, has reasonable people skills, and is OK with their hands. Not everyone can do facial reconstructions but most anyone can inject Botox and fillers. It may even be a big market which can accommodate many physicians. However, the availability of practitioners who can inject Botox into your wrinkles won't soften the blow much when you can't find anyone to treat your breast cancer, mutilating arthritis, or inflammatory bowel disease. My guess is that as the payers pick off the the selected cash cows, calling their margins too large, there will be little inclination to make anyone whole by trying to appropriately value the cognitive work which is essential in effectively deploying all of our technological medical marvels. The squeeze will be on.

 It may work out just fine. Those of us whose primary tool for practice is our brain may find that we can operate in a very low overhead environment. Others may elect to operate outside of the third party payment scheme, or at least one operated by the state. Many may do both. We will finally be able to see how cognitive medical services are valued by the public when the only way they will be available is if they are paid for by the end users and priced by market forces.  That is where real health care reform will happen.

 

Tuskegee Redux

An amazing story broke in the news yesterday regarding human experimentation studies with syphilis in Guatemala in the late 1940's. At the Center of this was John Cutler, who went on to play a central role in the infamous Tuskegee study, followed by a long career in Public Health at the University of Pittsburgh. While Cutler's role in the Tuskegee (and Sing Sing)  study has been explored extensively, his earlier role in syphilis studies in Guatemala had evaded detection until Dr. Susan Reverby stumbled upon his writings when reviewing Dr. Cutler's papers. While Cutler came into the Tuskegee study decades after it had begun, his role in the Guatemalan study was much more damning. The study subjects were prisoners and mentally ill and the rationale for their choice appeared to be specifically because Dr. Cutler knew such studies could not be done in the US.

The revelations are a public relations nightmare for the PHS. Furthermore, they also create all sorts of problems for the University of Pittsburgh where he served as chairman of Pitt's department of health administration and was acting dean of the Graduate School of Public Health in 1968 and 1969. He retired in 1985 from the University although he reportedly remained active until shortly before his death in 2003. Since 2005, the John Cutler Global Health Lecture and Award has been bestowed upon candidates annually. I am not sure I would want to include such an award on my CV going forward.

However, we all should all be wary of judging Dr. Cutler for what he did unless we really think hard about understanding what specifically about his undertakings was so reprehensible. Do not get me wrong. In my estimation, what he did early in his career, particularly the studies in Guatemala are so unacceptable that his subsequent accomplishments provide hardly any cover.

One principle which trumps virtually all other principles is that of autonomy. With very rare exceptions, patients and research subjects have unquestionable control over their own bodies. No matter what our intentions as individual clinicians and researchers, we must respect the autonomy of others who we interact with. All other goals and aspiration that we have as clinicians and researchers must be subservient to the principle of autonomy.

If the reports are correct regarding Guatemala, Dr. Cutler grossly ignored the principle of autonomy. However, he was not alone as evidenced by later work by Dr. Beecher published in the NEJM. http://whqlibdoc.who.int/bulletin/2001/issue4/79(4)365-372.pdf  Although he was criticized for his role in Tuskegee during his lifetime, his legacy was left pretty much intact, as evidenced by the lecture and award at University of Pittsburgh which bears his name. My guess is it will not survive these revelations.

While this particular revelation has substantial shock value and I do not think there are ongoing and gross violations in federally sponsored research programs now of this magnitude , I would venture to say that we still don't have this autonomy thing fully worked out. That is because our general perception of the "wrongness" of what Dr. Cutler did is based upon gut and shock value and not a true understanding of the specifics.

At the very heart of the problem is the process of informed consent. People should have control over their bodies and control means the ability to agree to partake in various activities. That is the consent part. We all know that means to get permission and agree to something, whether test, treatment, or participation in a study. However, in my estimation it is the informed part is where the problem lies. We all know that what Dr. Cutler did was wrong because we all know there is no way he could have convinced that number of people to participate in such studies if they were actually informed sufficiently to let them know what they were getting into.

In the present, patient and subject participation is generally within contexts where reasonable people well informed might decide either way, to participate or to not participate. Under these conditions, how can we tell if patients/subjects have been adequately informed? I would argue that the infrastructure we have put in place will protect against the most grievous transgression, but primarily serves the needs of the clinicians and research sponsors. It constructs a legal framework and paper trail  which serves as a charade for patient protection, a perfect example of regulatory capture.

As I march through my days on those that I function as a clinician, I am struck by the the hurried decisions I make, recommending diagnostic and therapeutic interventions which are based upon little or no hard data. Because of my particular awareness and sensitivity to this issue,  I at least make a serious attempt to focus on the informed part of the equation. However, it is very difficult to assess who is truly informed. No good tools have been developed to help us with this process. Does the patient understand what is at stake? How should we frame the question?

I suspect that my practice in my particular specialty is not very different from other practices. The clinical scenarios might be different but virtually all are marked by hurried decisions made with insufficient data, limited time for reflection, and patients who haven't a clue as to what they have agreed to. This is important for both procedural endeavors (where historically there has been the most emphasis) and for diagnostic tests, (For an interesting spin on this see http://getbetterhealth.com/the-american-cancer-societys-hype-prostate-cancer-screening-clearly-saves-lives/2010.10.02). It does not matter whether someone has signed a piece of paper. Consent is basically meaningless unless it is informed consent.

Let us roll the clock forward fifty years and I can see the outrage. Dr, Cutler never made an attempt at obtaining consent from his subjects and it could be said that he misled them, particularly those involved int he Tuskegee study. Few questioned these actions at the time but he is currently (and appropriately) judged harshly for these transgressions. It could be argued that we in the present world make only feeble efforts at true informed consent. This may not be viewed as a serious transgression through our present day lenses but will this be viewed with similar outrage to Tuskegee in the future?

Anecdote driven activity

The AP published a story by Jennifer Kerr earlier this week on the activities of the Consumer Product Safety Commission (CPSC) relating to science kits for children. http://news.yahoo.com/s/ap/20100929/ap_on_bi_ge/us_children_s_products_safety
It seems that the CPSC is worried that items such as aper clips and rulers within these kits have not been properly tested for safety. The manufacturers of the kits believe that these common household items should not require specific testing since they don;t require this when sold separately. The commission voted 3-2 to decline a waiver for this application.

I was intrigued by this story, prompting me to explore the CPSC site with various CPSC publications. http://www.cpsc.gov/cpscpub/pubs/pub_idx.html as well as the CDC site for data on death from various causes http://www.cdc.gov/nchs/data/nvsr/nvsr58/nvsr58_19.pdf. My question is what type of data would prompt the CPSC to be mindful of placing tighter regulatory scrutiny upon paper clips and rules. The best answer i could come up with was this was not a data driven endeavor.

At the CPSC I found tables summarizing the number of deaths and accidents that could be attributed to accidents with toys.

I am not particularly happy about any deaths of children from accidental causes but I think we need to look at these numbers within the context of the overall denominator. There are approximately 20 million US citizens under the age of 15, meaning the risk of toy related death in 2008 for this group was literally one in a million. Death in children is more likely related to some sort of congenital condition (primarily cardiovascular), accidental deaths (primarily drowning, motor vehicle), and infections.  To invest such time and effort in the regulatory endeavors which the CPSC builds cannot be justified on any rational basis. It appears to be that their efforts are best justified by the desire to justify their own existence. To that end they find the public relations ploy of scaring parents about the danger of toys and play pays handsome dividends in terms of their own budgets. A few scary anecdotes go a long way to accomplish this goal, whether intentional or not. However, we end up in an absurd place, looking to do safety tests on common household items. I wonder if they will next request to do safety testing on the packing materials, including the air in the box.

This type of behavior is not limited to the CPSC and they should not be singled out for special treatment. Indeed, medicine uses the same approach to highlight "problems" which require scrutiny.  My favorite area in medicine which parallels the CPSC behavior is medication monitoring which is hopelessly driven by anecdote. When the famous TV drama ER was on the air, the producers used the principle that if anything happened in the ER anywhere in the country once, it would occur hourly on the TV drama. Shooting, hostage scenarios, plague, bomb threats, you name it, the implication was these should be our primary concerns.

Likewise, if one patient anywhere has been reported to have a particular bad outcome on a given drug or after a given intervention, whether mechanistically linked or not, we will be called upon to restructure how we manage future scenarios based upon rare anecdote. We are concerned with the numerator and not the denominator. To avoid the one in a million unpredictable bad outcome we alter daily practice in such a way that we are guaranteed to hamstring our practices, mis-allocate scare resources and compromise patient care.  We end up doing the equivalent of the CPSC attempts to regulate paper clips and rulers.

Many within the medical profession have lamented the role of the legal profession as drivers of this. I must agree that the legal profession has not been shy about exploiting the environment of fear. However, they could not have made such headway if the health care world did not leave them with such opportunity in terms of operating in such a data poor realm. Beyond that, we have not cultivated a world within health care which is driven by data. We have resisted creating meaningful and measurable objective milestones to be held accountable to not realizing that these can be our best defense against capricious legal intrusions. It has also created openings for other regulatory entities to come in and fill the vacuum, making us measure the measurable and not necessarily what is important.

Those who take care of patients need to step up and realize that part of our job is to address how we can put systems in place which permits us to make important measurements which allow for important mid-course corrections. It is an important part of patient care. We can no longer use a reactionary system driven by rare anecdote.