What Patients Value in Everyday Medical Decisions

Mary comes in to see her physician, who she has known for five years, clearly worried.  The trust between them is excellent.  Mary is 42 years old, works as a waitress and has struggled with Metabolic Syndrome.  It is hard to manage the high blood pressure, high cholesterol and the need to maintain a healthy regimen of diet and exercise when you are sometimes working two shifts, trying to manage two teenage daughters and have a husband who is a truck driver and is gone much of the time.  The partnership between Dr. Sheila Jones and Mary has been excellent through the years and that relationship has led to control of Mary’s blood pressure and lipid levels even while the ability to eat well and exercise is limited due to life getting in the way. 

Today’s visit is different.  Mary is frightened because two people she works with have been diagnosed with breast cancer, and another third friend has also just started chemotherapy for breast cancer diagnosed three months earlier.  She knows that none of them are direct relatives, and that she does not feel any lumps when she examines herself, however she wants to be screened.  Dr. Jones sits and talks with her, telling her of the data that shows little to no benefit to screening before age 45 or 50.  Dr. Jones knows that the American Cancer Society guidelines do say that women over 45 should be screened and women ages 40 – 45 who wish to have a screening mammography should be able to do so.  However the US Preventive Services Task Force (USPSTF) says that screening should start at age 50 and the healthplan follows those stricter guidelines.  The screening mammogram may not be paid for since Mary has no medical risk factors, only inordinate fear.  Mary cannot afford to pay for a screening mammography from her own pocket as money is very tight. 

Dr. Jones knows that, statistically, the test will offer no benefit.  For Dr. Jones, ordering the screening mammography will be a mark against her on the scorecard that the healthplan keeps and may impact her income and even more importantly, her reputation as the scorecard is available publically. Dr. Jones talks to Mary and tries to dissuade her from having any test but Mary is not to be moved.  She wants the test or will try to go elsewhere to get it done even if that means switching doctors which she does not want to do.  Mary needs the relationship with Dr. Jones to be strong as her Metabolic Syndrome successes to date may be compromised by a breakdown in trust and a transition to a new doctor. 

 Dr. Jones thinks through her options.  She can call the healthplan medical director who may help her by making an exception however the healthplan medical director is told very clearly that his job is to communicate and obtain complex medical information that may not be reflected in the claims data, and not to go against the medical policy of the plan.  The healthplan lawyers are fearful that making decisions against medical policy sets legal precedent and may be used as evidence that they are not consistent in their fiduciary decision making.  Trying to work through that system can be a nightmare.  Or Dr. Jones can order the mammogram, not as a screening test but as a diagnostic test – a “rule-out” breast cancer.  She can say that she feels something on physical exam even though she does not.  It will maintain trust with Mary and will allow Dr. Jones to continue to be seen as her advocate.  It will also save time when she has twenty patients to see that day.  Dr. Jones tells herself there is a small risk that a false positive will be seen on the mammogram that will require more testing, perhaps even biopsy but there is also an extremely small chance the mammography will show a true positive that was unsuspected!  We are dealing with statistical probabilities after all.  Yes it involves telling a small lie and having something paid for by the healthplan that should not be paid for however how much more will it cost the plan if Mary’s Metabolic Syndrome was totally out of control due to her losing Dr. Jones as a trusted physician and she ended up with full blown diabetes, heart disease and all the complications. 

I present this as a dilemma and I admit for some, it is not a dilemma at all.  Many believe that the doctor must base all their decisions on the medical guidelines, deny the test and move on to the next patient. Dr. Barron Lerner, a professor of medical ethics at NYU Medical Center recently wrote an article in the Washington Post asking why the American Cancer Society took so long to “ignore evidence about early detection” when they recently increased their the screening age from 40 to 45 in breast cancer screening guidelines. He writes, “in an era of cost containment, we need to prioritize payment for proven interventions.”   However we are also in an era of trying to determine what the patient values not only what medical protocol says.   

In an article in JAMA Lynn, McKethan and Jha discuss the challenge that, as their title states it, “Value-Based Payments Require Valuing What Matters to Patients.”  They make the point that we must ask patients what they value and then deliver on those priorities.  However we must acknowledge that patients often value reassurance and family concerns over the strictly medical.   They are often more influenced by friends and family than they are by statistics and expert opinions.  In Mary’s case, she wants reassurance and wants to know that her life balance will not be upended.  She sees her friends struggling with all aspects of their lives as they deal with this potentially deadly disease.  They approach her about caring for their children if they die.  She must know that is not about to happen to her and she wants that test. 

In the JAMA article, the authors say “serious, life-altering and ultimately life-ending chronic conditions, often in old-age, pose a particular challenge for the health-care system because traditional professional standards may not effectively address what an individual most wants.”  I take issue with that emphasis.  I believe that often the most difficult issues are the more mundane, everyday issues that physicians and nurses encounter in the outpatient setting in the course of their daily practices.   Just like the metaphorical flap of a butterfly wing in Brazil (as described by Lorenz in chaos theory), that may change the course of a tornado in Texas, these small interactions with patients everyday may have in aggregate much greater effect than the issues of the patient dying of end stage disease.

The real challenge then is how to build these shades of grey decisions into systems of care.  These decisions involve people’s lives and not only their diseases, and occur between doctor, nurse, therapist and patient every day.  How can we make them work for both populations and for individuals?  Ultimately we must build health care processes and value based payments that respect the biomedical protocols as well as the humanistic, emotional, social and financial concerns that drive people’s lives.  We must build this for everyday medicine and not just intensive care and end-of-life medicine in order to maintain people’s trust in health care and solve our healthcare cost problems.  

Is Bad Data Better Than No Data?

We are now in the era of “big data” which, we are told, will answer questions we could never answer and also identify individuals before they are sick so we can intervene and prevent their illnesses and their problems.  It is exciting, earth shattering and the subject of more articles, blog posts and conferences than one can shake a stick at.  However is it true?  Can “big data” or little data for that matter really lead us to salvation (medically speaking at least). 

Forgive me for the religious association however it often seems as though people are taking the pronouncements from the medical data gurus as being holy writ from God.  That bothers me a bit because fundamentally being a monotheist I do tend to think that we mere mortals are not godlike in our perfection, even if we are physicians and even if we are the even godlier than physicians, health policy experts.  There is an old joke about a good man dying and going to heaven.  In heaven he is shown around by one of the angels who take him to the dining hall where a line of happy people are patiently waiting their turn to pick up their food for the day.  He then sees one of the heavenly beings wearing a white coat with a stethoscope in a pocket cut into line.  He asks the angel who that is and the angel says, “Oh that is just God – sometimes he thinks he is a doctor.”  Since we are not godlike in our analyses, we must better understand what all this data means, and whether bad data is better than no data.  Ultimately we need to know how to use data to help those in need.  That is the essence of medicine – helping those in need.     

I speak as a physician and a health data expert who has helped health care organizations, government and large corporations design programs based on the populations they serve.   The work I do is data based and thus I must understand the strength and limitations of data.  I know that data can potentially be used to positively impact the use of precious health care resources and the care a patient receives.  At the same time, in my professional role, I am often the skeptic, challenging those people who claim the data holds magical powers.  Thus I enjoyed the article by Dr. Saurabh Jha in the Health Care Blog entitled, “Quality of Skepticism and Skepticism of Quality.” It was his section on bad data being better than no data that inspired this post.  He makes the point, and I admit it is a point I make all the time, that perfection is the enemy of good but does not stop there as many do. Dr. Jha understands the limitations and that while perfection is the enemy of good, sometimes data analytics do not even achieve the standard of good.   

What then is this data we are talking about?  All data depends on some information, being put into the right format to translate into the binary code that computers understand.  When people speak of big data, at this point in time, they are mainly speaking of claims databases which take billing codes from insurance claims and assume that they accurately reflect the care that is being rendered.  Billing codes are financial tools that drive payment and are used by providers to maximize their revenues (there are courses and consultants that constantly try to help people adjust codes to do just that) and are used by insurance companies to minimize payments.  That results in a game with only passing interest in accurately reflecting what is going on between a doctor and a patient.  With electronic medical records, the hope is that we will obtain more accurate information on what is really happening.  The funny part is that the most popular and widespread EMR gained its market dominance by being able to help hospitals maximize their revenues by capturing all services and materials for accounting and billing purposes, not by accurately telling the clinical story.

Saul Weiner and Alan Schwartz, who I have spoken about in previous posts, have looked at whether medical records actually reflect what happens in an interaction between doctor and patient and have found, by comparing tape recorded encounters, and using standardized actor patients, that the record does not!  Thus even the data inputs from a medical record, considered to be much stronger than the claims records have serious flaws. They point out in their research that the medical records leave out the emotions, competing priorities, financial concerns, spiritual beliefs and other aspects of being human that have a major impact on the care rendered.  They call this contextualized care and have found the ability to understand the person and not only the disease is much more important in driving quality care than the purely bio-medical issues. 

Data tends to suffer from observational bias, sometimes called the “streetlight effect” from a joke that scientists like to tell.  Late at night, a police officer finds a drunken man crawling around on his hands and knees under a streetlight. The drunken man tells the officer he’s looking for his wallet. When the officer asks if he’s sure this is where he dropped the wallet, the man replies that he thinks he more likely dropped it across the street. “Then why are you looking over here?” the befuddled officer asks. Because the light’s better here, explains the drunken man.  We tend to look at these big databases, designed and optimized for financial purposes, because the light is better, even though the answers, the insights, are more likely found in data ‘across the street’ where it is not captured. 

But advances are being made.  Lab data is now included in some databases.  Pharmacy information, which used to be separate, is now incorporated.  Methods using word search and mining audio databases of phone calls between providers, patients, and insurers are starting to be used with some potential effectiveness.   However the databases, on a sheer numbers basis, are still overwhelmingly claims or EMR based, both of which are designed for financial and not clinical purposes. 

All this brings me back to the question which titles this post.  Is bad data better than no data?  I do not have a hard and fast answer.  Bad data can push you to make bad decisions and when the data is big, the bad decisions can really be whoppers.  Big data used to identify individuals is especially prone to mistakes as the variability in people is far greater than can be seen from the financially based data in the databases.  The danger is that we assume that the data is correct.  We assume it to be useful.  Dr Jha takes exception to this and says, “The burden is on proponents of the metrics to prove their usefulness.”  Currently that is not the case and the burden is on those who question the usefulness.  That does need to change and to be tempered by the medical tradition of skepticism. 

    

None of this is to suggest that the use of data be abandoned.  Perfection is the enemy of the good.  Let’s just understand what we are looking at, what the limitations are, and stop using even good data as if it is perfect.  We need to take a breath and study the use of data to evaluate its effectiveness rather than assume that all answers lie in those numbers.   

Getting the Joke

Many years ago, one of my children at a very young age was misbehaving and unhappy in school.  As two physician parents, we had him assessed by a preeminent child and adolescent psychiatrist who lived in our area.  The late Dr. Sherman Feinstein was at the time the editor of the Journal, Adolescent Psychiatry and had been a faculty member at both the University of Chicago and the University of Illinois.  When my wife and I, both relatively young serious physicians would ask him for his diagnosis of our son, we would always answer, “He doesn’t get the joke.”  We would of course be frustrated but he never wavered in that diagnosis.  That son is now grown, successful and definitely gets the joke. 

Recently, another one of my sons started a project in which he drives around the country interviewing people to better understand the nature of spirituality in these United States.  His recent blog post was entitled, “On Absurdity.”  He states, “So way down there in the trenches of my belief is this incongruity, this inescapable absurd formulation of believing at once that, yes we are all holy, knowing godly beings….but that we are also Hobbesian animals, too often fighting and killing each other like mindless unknowing brutes.”  We, as health care professionals, often give ourselves godlike powers even when we understand that bad things happen over which we have no control and inevitably we will make mistakes and bad things will happen because we are human.  The joke is that life is full of irony and absurdity whether in health care or religion or everyday activities.  That is just a part of our shared reality. 

All this comes to mind due to a confluence of unrelated events.  First, I have been traveling the past week to speak at conferences (my previous two blogs were more directly related to those conferences).  The rooms were filled with earnest young brilliant people who all had the answers to questions which have both fascinated and eluded me for much of my adult life.  Somehow I was both energized and amused by watching them in their earnest certitude.  The ideas that technology, data and Internet solutions could be the total answers to our health care questions seemed a bit absurd to me.  Second, I have been writing a paper on approaches to quality improvement which quotes the quality literature and the goal of “zero defects” that I know to be theoretical but people often confuse with something that is attainable with the right technology, the right data and the right evidence based medical guidelines.  The idea that healthcare, with messy human beings who bring with them complex diseases, complex social connections, differing values and cultures and their own emotions and even dysfunction can ever reach zero defects is really pretty funny.  The third was a conversation with a very close friend of mine who is a brilliant physician and now has a cancer with a particularly poor prognosis. 

This friend is someone who is always a bit depressed and overwhelmed by life.  He and I live in different cities however we speak regularly and it is often to give each other as hard a time as possible.  He is cautious, exacting, and holds himself to an impossible standard of excellence that any other mere mortal would see as ludicrous.  Whenever we speak he tells me of all the little annoyances that are getting in the way of perfection and all of the different daily life issues that are clearly taking his valuable time.  I make fun of his perfection in ways only close friends can.  But not this time we spoke.  Now he spoke with a calm and even happy tone that I rarely hear from him.  All this while he told me that the studies he has reviewed suggest his mean survival is unlikely to be longer than 31 months.  The thirty one months is typical of him.  Not “between 2 and 3 years” but thirty-one months.  I commented on his happy demeanor and he agreed.  All of a sudden all the small issues that would ordinarily annoy him seemed meaningless.  He got the joke.  It may have taken him his entire life but the happy news is that he now got it. 

The joke is that we all make mistakes; we tend to believe we have more control than we truly do, and that most do not accept or even realize that life is a fatal disease.  It is that life and work are filled with paradox that cannot be reconciled.  It is, in the words of an elderly monk quoted in Yossi Klein Halevy’s book, “At the Entrance to the Garden of Eden” that we must “Stand up for what we believe in but leave the results to God.”  It is the old Yiddish saying that Man Plans and God Laughs. 

We tend to take ourselves, our work and our own pronouncements (like this blog) more seriously than we should.  Rosamund and Ben Zander, in their book, “The Art of Possibility” have a chapter dedicated to “rule # 6” which is “don’t take yourself so goddamn seriously.”  I know that I often do.  I just then remind myself as I write these blog posts, that I send them to the cloud with little knowledge of whether people will actually read them.  That joke is on me. 

This brings me back to the meetings I attended last week with all of those earnest, smart mainly young people.  I think they need to have more people my age and older attend.   I believe that if you survive into your 60s and still attend these types of meetings, you are more likely to get the joke.  Wisdom and experience may really be a manifestation of understanding the irony of life.  That perspective may help balance the sheer enthusiasm of the young smart intense people who tend to gravitate towards these difficult problems.  Wisdom may be defined by the understanding that no matter how serious our mission, and no matter how intense our focus and efforts, if we don’t fundamentally get the joke and take ourselves less seriously, if we don’t understand that success is defined as trying to get closer to goodness even if we can never attain it, we will end up locked into our own concrete paradigms and ultimately fail.  And besides, if you get the joke, whether you succeed or not you can at least enjoy all the effort.