The Person, Not the Patient

"Who the person is with the illness is usually more important than what illness the person has." Sir William Osler.


A recent article entitled "Patient -Centered Decision Making and Health Care Outcomes, An Observational Study" in the Annals of Internal Medicine by Saul Weiner and his associates at the University of Illinois shows, to quote the article, "Attention to patient needs and circumstances when planning care is associated with improved health care outcomes". Not only does it lead to improved health outcomes but also to lower costs according to another recent article by that same group published in British Medical Journal Quality and Safety. While in Weiner's work there are many implications related to our health care challenges of high costs, difficult access, and variable quality, I also found within the findings of the research a return to the wisdom of William Osler quoted above.

Osler also said, "The good physician treats the disease; the great physician treats the patient who has the disease". Weiner , in his work, has found a way to measure the great physician. He has developed a research tool to determine if the physician (or nurse or other health professional) is trying to find out "who the person is with the illness" rather than only "what illness the person has" in the words of Osler.

Before describing that research tool an old joke bears repeating. A man is walking down the street late at night and sees another man on his hands and knees under a street light. The first man asks the man on his knees, "Are you looking for something?". The man on his knees replies, "I lost my keys" to which the man walking along responds, "Lucky you lost them near this light". The man on his knees says, "I didn't. I lost them about half a block from here". The upright man then asks, "Why are you looking over here?" The man on the ground answers, "Because this is where the light is".

Weiner and his group are not just looking where the light is, which is what many do when they limit research to claims databases and even medical records. Weiner audio records visits between doctors and patients to discover the true interaction and to discover how often the doctor is investigating the context of the person's medical problem. In his research, Weiner has defined ten elements of context and he and his staff listen to these office visits to determine if the doctor has asked about the person's life and values and whether the doctor has tried to find ways to remove the barriers to good care that the life context may have created. The ten elements, or domaines of a patient's context are access to care, social support, competing responsibilities, relationship with health care providers, skills and abilities, emotional state, financial situation, cultural beliefs, spiritual beliefs, and attitude towards illness. The researchers then use a standardized survey instrument, with multiple listeners independently rating the visits, to detemine the number of errors made in eliciting the "context" from a patient and in addressing that life context. Using this technique and survey tool they have shown that understanding the person who has the disease leads to good, and efficient care while just paying attention to the disease itself is hazardous to the patient's health.

One of the more recent studies, published in 2010 found that if a patient had no significant contextual issues, doctors provided appropriate care 73% of the time. If there were contextual issues that were missed then appropriate care was given only 22% of the time. The costs were significant as well, as described in the BMJ Quality and Safety journal article. They found that these contextual errors on average increased the cost per visit by $234. Medical errors in comparison increased the cost an average of $164 per visit. In total, the visits they recorded and assessed for errors by audio recording wasted $174,000 due to the errors while the errors found by chart review alone accounted for $8,700 in waste. Yet the bulk of the work in health policy and in managed care is related to the medical and not the contextual and is based almost entirely on claims review and chart review rather than actual recording of visits.

This leads to another quote by Osler: "Variability is the law of life, and as no two faces are the same, no two bodies are alike, and no two individuals react alike and behave alike under the abnormal condition, which we know as disease." Yet we keep believing that standard medically focused algorithms that hold doctors accountable to do the same thing with each patient are the answer to our health care dilemma of high costs and inconsistent quality. Don't misunderstand. The algorithms and the technology greatly improve the science and are welcome and necessary. However they may have an unintended consequence of worsening the art of treating the individual by focusing too strongly on steps in medical therapy even when the context makes those steps difficult or impossible. Both knoweldge of standard algorithms and of a person's life context are critical to good patient care. Osler understood this and now Weiner has demonstrated Osler's wisdom using experimental methods and scientific techniques.

As Osler also said, "Medicine is a science of uncertainty and an art of probability". Weiner has shown that the individual's values, family, finances, faith, emotions and everything else that makes that person a complex being must enter into both the science and the art for good, efficient care to take place. I doubt that can be accomplished by technology and evidence based algorithms alone. It also requires caring professionals helping people in need. We must either give our doctors and nurses the time, training and tools to "diagnose and treat" the context or develop new professionals, as we at Accolade are doing, to address these individual and population based clinical, financial and human needs.

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Constraints and Healing: The "Triple Aim" Meets the Reality of Illness

The “triple aim” of health care has been present for a long time but that particular term was first voiced by Don Berwick, ThomasNolan and John Whittington in 2008, in an article in Health Affairs.  That triple aim is care, health and cost.  This month’s Health Affairs is dedicated to the “triple aim” going global as more countries around the world struggle to find solutions to the care, health and cost dilemma. 

In the original article in 2008, the authors wrote about the need for three constraints to be put into place to drive us closer to the triple aim.  They were “(1) recognition of a population as the unit of concern, (2) externally supplied policy constraints (such as total budget limit or the requirements that all subgroups be treated equitably), and (3) existence of an “integrator” able to focus and coordinate services to help the population on all three dimensions at once.”  These constraints have societal and population concerns as the focus.  The “integrator” is there to “help the population” rather than to help the person.  I worry about a certain professional arrogance that is inherent when one defines constraints for people rather than asking people as individuals, what they need.  While populations are made up of individuals, individual’s values and views may be minimized when the population is the focus.  When the first step is the development of constraints, the individual is likely to see those constraints as being against their own best interest. 

This focus on the population, as it is currently interpreted, runs the risk of minimizing the need to understand the many human elements in dealing with illness.  It can downplay the fact that the ability of any one person to heal is often as dependent or even more dependent on the social, economic, psychological and spiritual parts of their life as it is on medical science and health system operations.  People need to have some help balancing their life with their illness when they are sick.  People, as individuals need to have a trusted resource to help them through a maze of difficult decisions and difficult choices that poor health demands.  People need help finding their own voice in a system that can appear to be more concerned with population needs than with individual patient care. 

Good health care is labor intensive and the labor is expensive.  Much of that labor is involved in the technical aspects of care but patients and their families also value expert assistance in decision making requiring knowledge and skill that is totally focused on the individual and their own understanding of how they want to live their life and how they value the options before them.   Traditionally physicians and nurses have taken central roles in that communication and decision making.  However our attempts to create efficiencies, as our population grows more diverse and our health system grows even more complex, have caused doctors and nurses to spend less and less time understanding the person as a person, understanding their values and respecting their autonomy.  Doctors and nurses are considered too expensive to be used in such a way.  But that human need is still there and the emphasis on doctor and nurse productivity has led to a void as the time to understand the patients before them as people is not seen as productive.  That void, has led to higher costs as people give in to their fears and isolation and flail around a health care system as they try to find their way to healing. 

An article in the “triple aim” issue of Health Affairs by Michael Macdonnell and Ara Darzi entitled “A Key to Slower Health Spending Growth Worldwide Will Be Unlocking Innovation to Reduce the Labor Intensity of Care” addresses this issue of the cost of expert health labor.  In the United States, 56% of health care costs are labor costs. They point to labor saving technologies, telemedicine services, and the high productivity centers in India at which “the hospital uses expensive assets such as cardiac catheterization laboratories at a rate five times that of US hospitals” to achieve a resultant lowering of the labor costs for each procedure with an efficient assembly line approach.  They speak of the need for more “patient self-service” especially in the management of chronic disease.  They do not address the need to treat the whole person; the need to address the fear, isolation, loss of autonomy, possible loss of job, and possible loss of feeling of personal worth that can easily be a part of any illness. 

We continue to try to find solutions to the triple aim but always appear to focus on the costs and to focus on disease as divorced from life.  Until we truly understand and address the issue of illness from the point of view of the person who is sick and from the family who cares about that person, we will miss the boat. 

At Accolade, the company I have had a part in building, we have addressed the labor economics by addressing individual’s issues of life and illness directly.  We have created a new profession of Health Assistant.  The Health Assistant offers expert decision support and expert knowledge of the whole person and their family to help with all the implications of the illness.  Each Health Assistant maintains a focus on the specific needs of that person and family and helps them from their perspective.  They are serving that person and that family and purposely not focusing on the triple aim goals of the health policy experts.  The irony of this focus is that by maintaining the focus on the person as part of a family and community unit, savings are achieved that are greater than in programs that constrain and greater than in programs that attempt to tell people what is best for them. 

Our new profession is in the business of helping the person find his or her own path to health and healing but not in diagnosing and treating disease.  Our innovation is focused on building a skilled work force to focus on the needs of the individual and the family from their reality and their prospective as they access health care while living their lives.  

Genomics, Clinical Risk and Financial Risk

We now have the entire human genome defined and “sequenced” and the costs of this clinical sequencing for individuals have decreased dramatically.  In medicine today, that knowledge is being used to develop new tests so that health professionals can use the genetic tests to assist in making a diagnosis and deciding on treatment.  However as the costs of whole exome and genome testing go down even more, a price point is nearing at which it will be less expensive to do a complete clinical sequencing than to do specific genetic tests.  This promise of more genetic information at lower costs creates the possibility that we will have more information that can potentially help the patient.  There is also the promise of finding abnormalities that we did not anticipate.  This is what the American College of Medical Genetics calls “incidental findings” and is no different than that seen in many areas of medicine today.  When a doctor sends a person for a chest x-ray, or a chest CT for a cough, unanticipated and incidental findings may be seen in the bones that are visible on the imaging study as an example.  With complete clinical sequencing however the number of secondary and incidental findings may be significantly larger than we see today with other diagnostics. 

In recognition of these emerging facts, the Institute of Medicine hosted a 2 day meeting in July 2012 to help understand the economics of adopting whole genome sequence information into health care.    That led to a report of the meeting and also to a “viewpoint” published in the Journal of the American Medical Association entitled "The Economics of Genomic Medicine" that described the main agreed upon insights by the participants.  In my words, their points were:

1. Genomic researchers, health care practitioners, payors, and economists are all speaking different languages and have no comfort with the languages of the other disciplines making any discussion of value and economics difficult.
2. There is little to no evidence at this time demonstrating that genomic data favorably affect health outcomes.
3. We don’t know how to use and explain this clinically sequenced data to people in any sort of logical, understandable and cost effective manner to produce value.  We just don’t know what to do with these genetic facts so health professionals have a hard time educating and counseling their patients on the implications of the clinical sequencing.  
4. We don’t understand “personal utility” and its role in assessing the value of sequencing. Personal utility describes the meaning and worth any test or intervention brings to an individual from that individual’s perspective rather than from any external metric such as morbidity or mortality or from an expert’s perspective.

To summarize, we don’t know the value that this clinical sequence has for an individual, we don’t know how to talk about it, we don’t know how to measure its value, and the experts don’t completely understand one another.  Admittedly that makes discussing the economics difficult at best.  It also creates a dilemma for the payors, both private and government, about what should be paid. 

In this country, we have a combined pre-paid health care model and a health insurance model to pay for care.  Insurance is a way of sharing the financial risk of relatively unusual high cost events while pre-paid health addresses the costs of preventive care and screening which are not at all unusual.  Preventive care and screening are encouraged and paid as the value from both a public health and a moral point of view are believed to be worth the cost.  The theory is that finding clinical risks early leads to lower costs of treating disease and thus would also be advantageous for financial risk.  The economic reality has proved to be more complex however and is dependent on the specific clinical issues and the specific use of the information that screening uncovers.  That has led to tremendous debates in the public arena concerning specific tests, such as debates around the use of PSA testing for the risk of prostate cancer and the appropriate age to start screening with mammography for breast cancer.  These debates occur as we attempt to find definite answers to questions that can really only provide us with statistical estimates of both clinical and financial risk.    

Risk is nothing more than a probability based on data.  This is true for both clinical risk and financial risk.  We now routinely treat disease risk, as much or even more than we treat disease.  We screen for silent illnesses such as hypertension that may not be symptomatic to prevent them from causing problems in the future and try to find illnesses at earlier points in their course to affect cures such as screening for breast cancer and colon cancer.   But we don't really know what would have happened in each case had we not screened.  We can only estimate the probabilities of both clinical outcomes and financial outcomes.   

With clinical sequencing, we have entered the potential for a new world of health risk.  Right now, the issue is one of deciding how to report the incidental findings from a clinical sequence.  The American College of Medical Genetics has spent the last year developing a policy statement on just this issue with the draft recommendations now being circulated among members of the college.    Part of their effort is an attempt to identify clinically relevant incidental test results and then recommending whether or not such findings should even be reported to the patient.  But this is just the beginning.  As our understanding improves we will quantify new risk probabilities and thus new test "results" based on the clinical sequencing and the number of incidental findings may multiply. 

I wonder if some of their efforts to control what is reported are in vain and are an outgrowth of the different language they, as experts in genetic diseases, speak when compared to the patients and the public who see the open dissemination of all available information as a human rights issue and a patient autonomy issue, rather than a test reporting issue.  The ability of any health professional or any expert organization such as the ACMG to define what results a patient should see and should not see is likely to be strongly challenged and will probably ultimately be refuted. 

This can lead us to a situation in which the multiplied “incidental findings” which are reported can lead to patient demands to find reasons for these findings and to attempt to modify any risks inherent in these results.  That can only lead to higher total costs with little potential benefit at this point of knowledge.   

In this scenario, the economics become challenging.  Who should pay for this type of attempt at risk mitigation when the likelihood of clinical impact will likely be low for some time to come?  Will it be decided by the American College of Medical Genetics which will look at clinical utility or by the yardstick of “personal utility”?  I am as unsure as the members of the esteemed IOM panel.  While the potential for good is exciting, the potential for increased financial and clinical risk from attempting to predict and cure every possible illness is a bit overwhelming.  We will need to be very careful as we try to address the excellent points made by the Institute of Medicine Committee. 

Questioning, Listening and True Learning

“If men learn this, it will implant forgetfulness in their souls; they will cease to exercise memory because they rely on that which is written, calling things to remembrance no longer from within themselves, but by means of external marks. What you have discovered is a recipe not for memory, but for reminder. And it is no true wisdom that you offer your disciples, but only its semblance, for by telling them of many things without teaching them you will make them seem to know much, while for the most part they know nothing, and as men filled, not with wisdom, but with the conceit of wisdom, they will be a burden to their fellows.”
― Plato, Phaedrus

This week, I sat down with my family for the traditional Passover Seder with the reading of the Haggadah and the ongoing questions and discussions that are the central part of the evening.  The feast of freedom, as one Haggadah calls it, is based on questions as being free means being able to question everything without fear.  The written word of the prayers and the story of the exodus from Egypt, while important, are not as important as that interactive dialogue that ensues and that is expected and even mandated by the holiday.  Each section is designed to elicit conversations, questions, and thoughts that lead to the participants gaining intrinsic knowledge.  This is in keeping with Plato’s contention that merely reading is not a way to impart knowledge.  True knowledge must come through dialogue and creating an internal understanding of the topic at hand.  I have found this to be particularly true in health care and in endeavors to help people obtain quality care from our health care system. 

  

The first step in internal understanding as Plato understood is to ask a question and then listen to and hear the answer.  Each year at our family Seder, it starts with the four questions asked by the youngest in the home.  My grandchildren, age 7 and 5, are asked (and were asked as soon as they could talk) to form their own questions at that section and throughout the Seder in addition to the standard four questions.  Everyone at the table is encouraged to ask questions.  The questions themselves are always more important than the answers as the questions allow a discussion to start: a back and forth of the type that is more likely to produce learning and understanding.  Isidor Rabi, who won the Nobel Prize in physics, was once asked why he became a scientist.  He answered, “My mother made me a scientist without ever intending it.  Every other Jewish mother in Brooklyn would ask her child after school: ‘Did you learn anything today?’  But not my mother.  She always asked me a different question.  ‘Izzy’, she would say, ‘Did you ask a good question today?’  That difference – asking good questions – made me become a scientist.”

 

Plato, in writing his dialogues, often presented Socrates as a questioner.  Our understanding of Socrates is through these dialogues written by Plato.  Plato and Socrates believed that just reading something, rather than discussing something, could not lead to true learning and could instead lead to an intellectual laziness which would produce people who “for the most part they know nothing, and as men filled, not with wisdom, but with the conceit of wisdom”.  Plato tried to recreate that give and take by writing as dialogues.  Implicit then in this approach to questions leading to dialogue is the assumption that after the question is asked, there must be true hearing of the answers, if only to be able to formulate the next question! 

That resultant listening is really an exercise in interpretation and then in testing that interpretation with yet another question.  Thus the iterative nature of a good clinical interview is really no different than a Socratic dialogue or a discussion elicited by a question at a Seder table.  Plato and Socrates believed that only in such a manner could learning occur and Professor Rabi believed that only in that matter could unique, creative scientific inquiry truly occur.  In medicine and law, that tradition of asking question and then eliciting discussion, dialogue, and research, is at the heart of education and training.  It is believed that intrinsic learning occurs in the iterative nature of the teacher and the student having such a “dialogue” on the topic and situation at hand. 

The goals of using such a system of questions followed by dialogue in health care are to create a better understanding between a care giver, a care supporter, the person in need and often the family in need.  That understanding then leads to better, more personalized care for that unique individual.  It allows for intrinsic learning for the patient who needs to do certain things, whether it is to take certain medications, stay on a diet, or follow through on therapy.

 

Currently, there are those who believe that technology can make this dialogue unnecessary.  A professional forming a relationship with a person in need is believed to be too costly and even wasteful when powerful big data, interactive Internet tools and apps that are with us wherever we go can be used instead.  Engaging in dialogue is believed to be too expensive and too difficult.  Yet we should share the same fears in this era as Socrates and Plato did in their era: the fear that we will not achieve intrinsic learning, either on the part of the care giver or of the patient by the mere reading of an Internet page or the use of an app.  We still need those dialogues that lead to true relationships in order to create the intrinsic understanding that leads to action on the part of people who are patients living their lives with their families, their work, and their friends.  The technology is welcome but only if used to foster the dialogues and to assist in the development of the relationships that are at the heart of good practice and good care. 

Thus asking the right questions, truly hearing the answers and using that as a starting point for dialogue are crucial steps in creating good quality care.  That may not win any Nobel prizes or lead to the entirety of Western philosophical thought; however for me, as a dedicated health professional, it is an art that we should continue to foster and not allow to be lost in the excitement over technological solutions.  

Health Care, Big Data, and Black Swans

The movement towards using “big data” in health care has the ability to vastly improve the way medicine is practiced.  The term “big data” is used to describe large databases processed by powerful processors analyzing and recognizing trends and patterns that would not otherwise be apparent.    Today, research into the use of big data is centered on the analysis of the human genome and the resultant individual variation of disease and response to therapy, and in the use of health insurance and electronic medical record data to find patterns of care in order to potentially improve quality and lower costs. 

The genomic research is moving from the description of the genome into the more practical application in the treatment of disease.  The goal is to create “personalized” medical care based on each individual’s specific genetic makeup.    The most obvious use is the application of genomic knowledge to define specific sensitivities to certain drugs for certain illnesses so that the medications can be customized on the basis of this individual data. 

The use of the claims and EMR data is more likely to be used in the realm of developing best practice protocols and safety protocols.  A supplement in the latest issue of the Annals of Internal Medicine with an accompanying editorial show how the use of data combined with expert protocols can lead to greater safety and the avoidance of critical errors in the hospital. 

As complex as these two areas are, it should come as no surprise that they don’t yet meet or coordinate.   We are too early in their development.  We do not yet know how to combine a “big data” approach to populations to the “big data” of the individual.  When dealing with populations, individual variations of the type that we try to define with “personalized” genomic based care, is often just “noise’ in the statistical system of the population.  So the trend towards personalized care may be contrary to the trend towards evidence based care based on large databases. 

Both of these somewhat different approaches also leave out an entire domain of the complex business of treating individual patients.  We may not be asking some of the most important questions.  All of these applications are focused on services or encounters, costs and biology.  There is no focus in either a genomic approach or an encounter, claims approach on people as complex, multifaceted individuals who are living social lives in the context of their own emotions, beliefs, economics, and values.  People are complex and that complexity is only partly related to their biology and their claims records.  

Perhaps we need to ask what defines good medical care as another starting point.  The hallmark of a superb diagnostician, is the one who can recognize and look for black swans.  Nassim Nicholas Taleb, who is a distinguished professor of risk engineering at New York University and the author of the book, “The Black Swan: The Impact of the Highly Improbable” is someone who has studied risk and chance in finance for much of his professional life.  He defines a black swan as an event, positive or negative, that is deemed improbable yet causes massive consequences.   In medicine, these events can have death or chronic disability as the consequence.  For me and my family, I want a doctor who will always be thinking about potential black swans while also minimizing the risk of sending me on diagnostic wild goose chases (to mix bird related metaphors).  I wonder if systems that are too focused on the best practice protocols, developing the evidence based medicine, will have that ability that we see in the truly expert, experienced clinician or if the best practice protocols will actually punish that sort of thoughtful, experienced based approach by seeing it as being inefficient and not in keeping with the evidence that supports the bulk of medical care. 

The hallmark of a master clinician is one who customizes the decisions, in partnership with his or her patient, taking all the data, including the social, emotional, financial, and spiritual into account in managing the problem at hand and in managing the potential for future problems.   I also worry that we don’t have databases that reflect the real reasons people get better or not.  The master clinician asks the right questions and listens for the answers with a skill that currently no computer can match.  Does the patient have the family support that is needed to deal with illness?  Can the patient afford the right diets?  Does their religious belief create a social network of support and a psychological framework to allow someone to deal with their physical condition in a way that fosters healing?  Are they worried about other family members and that is leading to their spending less time caring for themselves?  Do they lack basic shelter?  While this may also suggest the need for yet a third domain of big data we also have to be concerned with the moral implications that this third type of data may bring.  The loss of privacy and the ability to misuse data such as this is great.

 

So I hope that we make good use of the big data systems that we are now building but I also hope that we never let these systems become a new type of electronic care giver that ignores all of the important elements that we are not, and perhaps never will, capture.  Let’s also hope that these efforts at big data and evidence based protocols do not lead to our ignoring the possibilities of those black swans in medicine that can devastate people and families. 

Most of all, let’s make sure that in any system of care, we always ask the right questions to help us understand the people behind the illness and to truly hear their answers.  We will always need to find, as Professor Taleb puts it, the “bird droppings” of the black swan so we don’t miss the illness that can be a catastrophe.  

The Doctor, the Pilot and the Dog

There is an old joke told among people in aviation.  The joke is that the airplane cockpit of the future will have a pilot and a dog.  The pilot is there to feed the dog and the dog is there to bite the pilot if he tries to touch anything.  The idea behind this is that the airplane of the future, carrying hundreds of people, will be fully automated and be safer than planes are today and that the pilot, will not only be unnecessary but potentially dangerous to those on board.  Of course that joke does not acknowledge that computers may shut down or need to be overridden.  Presumably in the cockpit of the future a Captain Chesley Sullenberger will not be needed to land a plane with no working engines on the Hudson River and safely get all of his passengers out without any deaths.  As a passenger however, I would be reassured to see “Sulley” or someone like him up there in the cockpit no matter how good the systems were.

 

Human beings are at least as complex as airplanes yet we now see a belief, most eloquently voiced by the brilliant businessman and venture capitalist, Vinod Khosla, the founder of Sun Microsystems (the link to download Mr. Khosla’s full statement is attached) that can be read to suggest that the doctor’s office of the future will be staffed by a doctor (but probably a nurse since doctors are too costly) and a dog.  His thesis is that 80% of what is now done by a physician will, in the future be done by technology.  As one reads his thoughts on this, two of his assumptions became apparent to me.  One is that he believes that the diagnosis of disease and the defining of treatment plans is a bigger part of medical practice, especially primary care medical practice, than it really is.  The second is that he has great faith in the ability of systems to consider non-medical factors such as a person’s beliefs, values, social situation, financial situation and psychological makeup that may affect diagnostics and therapeutics.  I wonder.  The reality of practice is that 80% of doctors’ visits are driven by fear and social isolation rather than diagnosable disease.  The reality of therapeutics is that the diagnosis and treatment plan are only a small step in the march towards cure which depends as much on the non-medical factors and the physician and nurse ability to understand and impact those non-medical factors as it does on the science of disease. 

Mr. Khosla’s contention is that much of the knowledge that is now driving specific diagnostic approach and the outline of treatment steps will be and should be facilitated by technology.  That is absolutely true. All he says of the promise of technological systems to process medical inputs such as blood pressure, pulse, weight, lab data and certain pieces of history to create a better health care experience for all also is true.  However if our current approaches to laws, rules, regulations, and health systems are based totally on Khosla’s faulty assumptions of the nature of medical practice rather than on practice realities, then we may create a system that is not as individualized and not as attuned to the inherent uncertainty that comes with people as social, spiritual and psychological animals, as good medicine should be.  I worry that if we build a health system that is based on this already accepted assumption that technology and guidelines will fix all of our health care woes we will end up with a dehumanized system that creates an entire new set of problems.   In our zeal to improve what we acknowledge to be broken in health care, we may minimize the danger of a system that is based purely on technology, rules and algorithms.

A recent case in California that David Shaywitz wrote about in his Forbes blog is a good case in point.  A nurse in an extended care facility did not perform CPR on a patient because it was against institutional policy for her to do so.  Instead of seeing a person in need, this nurse, who is presumably trained in CPR and trained to recognize someone having a cardiac arrest, followed the institutional policy instead of doing the right thing for that patient.  This is an example of procedure trumping patient care and trumping empathy and thought.   One can make the argument, as Khosla does, that our current systems and protocols are primitive and they will improve over time and they would, in the future, not allow this to happen.  However even in the best of systems, the danger of relying on expert systems, and even requiring their use, is that fear of overriding the system can take precedent over the need to help. 

The recent entry of electronic medical records is another case in point.  The EMR has allowed for medical guidelines to be built into the medical record and that is a strong plus when combined with an ability to catch and prevent certain errors that may result in danger to patients.  However it has also fragmented the information needed by a health professional so that trying to navigate a medical record to get a quick understanding of a patient sitting before you has become even more of a nightmare than it was with a paper record.  It also requires sometimes time consuming and complex data entry by the care giver.  I have accompanied friends to emergency rooms only to watch the doctor pay more attention to data entry and following the algorithm than to the patient in need.  Bad information can also become so embedded by a system that encourages “copy and paste” and standardized wording instead of independent thoughtful analysis that incorrect diagnoses and histories become impossible to change. 

So I sit here and only hope that I always have my and my family’s care directed by me and my family working in partnership with a caring health professional, usually a doctor, who uses technology but never allows it to overtake his or her own judgment, knowledge and empathy.  I will always prefer a captain in the cockpit of an airplane and a caring physician by my side.  

If the Medical Bills Don’t Kill Us, the Commoditization of Medicine May

This week an important investigative article was published by Time Magazine written by Steven Brill.  In the best tradition of muckraking, Mr.Brill brought to light the labyrinth world of hospital and medical billing.  It is wonderful when facts are brought into the antiseptic of sunlight as is the case in this article.  The high charges that plague health care can be reality and lead to tragedy for some, or just a convenient benchmark for the lower prices that are the norm in much of the health marketplace.  Mr. Brill brings this complex reality to light and does an outstanding job in communicating the complexity and the incoherence that is billing for health care services. 

Good investigative journalism, in exposing facts that need exposing, can sometimes turn a simple tragedy into a morality play.  In this case, instead of the simple tragedy that is caused by history, rules and regulations, we are given the morality of the greedy hospital executives and the heroic Medicare regulators.  The hospital executives are taken to task for high salaries and for the huge mark ups.  The Medicare regulators are lauded as knowing the right prices for everything and for working hard to help the people who have to deal with these greedy hospitals.  This is where the article loses its focus by trying to be dramatic.  The mundane facts are that hospital executives are usually hard working people who really care about the people being treated by their institutions just as Medicare people are usually hardworking people who care about the people helped by Medicare.  In many ways, each are playing their role with the hospital executives merely being human and playing the cards they are dealt and the Medicare regulators doing the same.  Those cards includes a legislative and regulatory backbone that rewards sky high charges and actually punishes those systems that try to be more rational in their approach to charges.  As Brill points out, if the charges are high then the discounts against charges also remain high.  This comes to light through the article as Brill talks about the amounts that hospitals actually receive compared to those charges.

Brill is at his best when he describes the trauma that people go through with high medical bills.  Yet he also seems to miss the point at times.  In his description of Janice S, he says, “We cannot know why the doctors who treated her ordered the more expensive tests” yet he describes events as if he does know.  And that fundamental incongruity leads to conclusions that can misrepresent how events actually happen in the diagnosis and treatment of people’s illnesses.   Often doctors order tests because they don’t know where the results of the tests will lead them and they are afraid of missing something that could potentially help the patient.  Often doctors are worried about the “low probability, high consequence” events that while unlikely, if missed could lead to catastrophe.  So trying to judge the billing by the final diagnosis rather than by the process that the doctor went through is inherently wrong and can often make the most diligent and well-meaning physician seem either greedy or incompetent when in reality he or she was doing a good job for their patient.   Janice S was being evaluated for possible heart disease that could have been acute and fatal.  We all celebrate the fact that it was indigestion however the doctors did not know that at the time.  It may be easy to think that it is defensive related to malpractice or that the hospital is encouraging the use of expensive tests to gain revenues but I think the reality is that the doctors are just trying to do everything to help the patients.  Janice S’s problems were unique to her and the physicians treating her made decisions based on how she presented at that point in time.  They may have been wrong in their assessment but I will not impugn their morality or integrity in the decisions they made. 

Mr. Brill talks about the fact that MD Anderson and Sloan Kettering have high priced executives and collect about 50% of their charges due to their brand recognition compared to about 35% which is the hospital industry average.  It may be brand recognition but it may also be because they really are better run and treat the highly complex patients who find their way to their doors in a manner that is more conducive to cure.  Mr. Brill tells the story of Alan A. who is told that he has no hope and then goes to Sloan Kettering, is treated, and is still alive 11 months later.  For me, that part of the story is at least as important as the fact that the costs were high. 

I am not defending the billing practices and that is not my goal.  They are awful and should change.  But if we change in such a way that we look at health care as a commodity, when it really is an art and a science that is highly dependent on the skill of the individual artisan applied against the complexity of the individual patient, then we will go backwards and not forwards.  Do we really think that a community hospital in central Florida gives the same care as the MD Anderson Hospital?    I know that I don’t believe that.  Every day I am asked to recommend doctors and facilities for people with very complex illnesses and it is rare that I will recommend a doctor or hospital that practices in a small to mid-size hospital as they are unlikely to see complex people in the volume that is needed to stay proficient in their care.  That is not an insult to those fine doctors and nurses who are in the trenches helping people every day with primary and secondary care but instead a comment on the fact that people need to have as their care givers, professionals with skills that are unique to the person needing help and the situation that they are in.  Products or services sold as commodities are just the opposite.  They are all the same so they can all be sold at the same price and negotiated mainly by price.  That is part of the challenge with Medicare. 

Medicare, even with their formulas and rules and regulations tends to look at health care services, as commodities.   And lest you think that Medicare has all the answers and actually pays hospitals what they need to not only survive but thrive, think again.  Those formulas that Mr. Brill accepts at face value are from the same people who bring you the crumbling infrastructure of the highways and bridges in this country.  Medicare officials and policy people do their best but their struggle is always to keep afloat a system that must be built for the people who tend to be “routine” and not necessarily for the complex people who don’t really fit the system.  There are special codes and formulas that are supposed to reflect the realities of different geographies, different types of hospitals and different payer mixes however they are also subject to political pressures (there is plenty of lobbying as Mr. Brill points out) and to budget challenges that can change the dollars available.   And they cannot reflect the social, economic, and cultural differences of the individuals in need.  Those complexities with the emotional upheaval of illness are also part of the realities of medical care. 

So let the sun shine in.  Let’s stop the insanity of charges that are jacked up in order to justify huge discounts down the road.  Let’s stop the “unbundling” of services and products that should be included in a set fee.  Let’s encourage and help every patient to negotiate the fees they are charged and understand that they have power in the relationships with the health facilities and health professionals.  Let’s make health care affordable and accessible for all who need it.  At the same time let’s acknowledge that people are not widgets and that the idea that one size fits all in medicine may lead to lower costs but will also have the potential to hurt a lot of individuals along the way.