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.  

Living with Illness and Patient Engagement

“The art of medicine consists of amusing the patient while nature cures the disease”  Voltaire (1694-1778)

This month we are hearing from many sources that patient engagement is the blockbuster drug of this decade.  In Health Affairs, the entire issue has beendedicated to this topic with Susan Dentzer, the editor-in-chief stating in herintroduction to the issue that “the emerging evidence is that patients who areactively involved in their health and health care achieve better healthoutcomes and have lower health costs than those who aren’t.”   The organization, the Society forParticipatory Medicine, of which I am a member, has seen its list serv discussion light up with passion around just what is meant by patient centeredness and patient engagement and how far it should go in terms of patient control of their own diagnosis and treatment.  Yet I worry.  I worry that all of this is still attempting to find a simple formula, or simple buzz words, to a complex issue that is perhaps not only about patient engagement but also about the autonomy and dignity of humans.  It also begs the question of patient engagement with what or with whom?  Is it engagement with their health and their illness or engagement with the professionals involved in their care or both?  Can we have engagement with professionals in this day of fifteen minute physician appointments and our emphasis on efficiency?  Part of the question, for me as a physician then, is what the physician’s role is in patient engagement?  And does that role have any additional role in elevating the dignity of man?

While this may sound a bit grandiose and perhaps delusional, this does relate to the way I, and my generation of physicians was trained.  Part of medical training then was to “live” with the people who were sick.  People were kept in the hospital for the better part of an illness and the interns and residents who cared for them lived there with them.  That led to 72 hour shifts and too often, residents and interns who made dangerous decisions due to lack of sleep.  It also led to people being in the dangerous hospital environment in which hospital borne infections tend to overwhelm people when they are already weakened from their primary disease.  Today’s approach to medical training eliminates those dangers and is better for both doctors and patients.  But I do worry that the approach to “living” with your patients and truly understanding on an emotional basis, what was involved in being deathly ill, may be lost.  When that is lost, we may also lose the physician’s ability to engage with their patients on the human level that is so sorely needed. 

Disease and illness is time based.  By living with people who are sick, one truly understands, what is referred to as the natural history of disease.  Every illness has a natural progression and the role of modern medicine is to try and influence that progression in a positive way.  It may be to accelerate the healing that would ordinarily occur or to change the natural history would otherwise lead to death or chronicity.  It may even be, as Voltaire reminds us, simply to be with the patient and be positive at a time when it is hard to see the light at the end of the tunnel of illness.  Because it is time based, it requires a relationship between a health professional, usually a doctor (but in this era, more and more it can be a nurse practitioner or a physician’s assistant or a different health professional), and the patient.  The best care does occur when the patient is engaged and is actively involved in their care however the best care also occurs when a trusted health professional, who knows the person and not only the patient is as involved and engaged in the care as the patient herself. 

Too often, when we speak of patient engagement and patient centeredness, we are speaking of a zero sum game that attempts to make the health professional into an exalted expert computer system (or perhaps to just use an expert computer system and eliminate the doctor or nurse) instead of acknowledging the role of a trusted and caring professional to engage with the patient.  We attempt too often to say that the patient, as an autonomous independent person doesn’t need anyone except themselves.  But the person in need does require help.  The person in need does require an expert professional to engage with in order to obtain the best care. 

The physician must understand the person behind the patient well enough to know how to form a partnership that is based, less on the disease the person has and more on who the person is. It is only through this partnership that the physician can help keep the patient calm and allow for the natural history of disease to progress in such a way as to foster healing.  The expertise of the health professional impacts the disease when it is done right but only when the patient trusts the professional and believes that he or she is acting in a way that is consistent with the patients’ beliefs, values and desires.  That is when true engagement occurs.  That is when the involvement of a person in their own care is able to improve the care and also elevate the dignity of the person who is ill. 

Patient engagement is the blockbuster drug but let’s not make it a chance to push the burden of illness onto the patient alone and to abandon the person in need just when they could benefit most from a helping, caring, knowledgeable hand. 

Helping Your Doctor Stop and Think

"Men more frequently require to be reminded than informed."
Samuel Johnson: Rambler #2 (March 24, 1750)

It is always a good rule of thumb to stop and think.  In medicine for physicians who are treating patients, it is a necessity of good care.    For good medical care to occur, the ability of a physician to stop and think is dependent on their ability to truly listen carefully to each and every patient in a way that recognizes their unique problems and circumstances.  Physicians are taught that way but in today’s world in which time is limited, they sometimes need to be reminded. The prepared, informed, confident patient is in the best position to remind the doctor of the need to slow down, listen and think.

 

In a recent article in a local newspaper, Dr. Murray Feingold, who is physician in chief of the Feingold Center for Children, makes that point.  (For full disclosure purposes, The Feingold Center was previously known as the National Birth Defects Center and my wife, Dr. Rhonda Spiro, was associate physician in chief working closely with Dr. Feingold.)  In his article, Dr. Feingold laments the fact that less time is being taken to listen to patients.  He also notes that computers may compound the problem as the physician may be more focused on data entry and the computer, than on the patient.  Dr. Feingold even talks about one hospital that prohibited the use of a computer in the exam room as they found it took away from the personal connection with the patient.  It is sometimes hard to stop and think when you are just looking to the next field that you have to fill in an automated record. 

Like any rule, the “stop and think” rule has certain exceptions.  The reason that the training of health professions includes drilling on certain emergencies is to ensure that the treatment of a life threatening situation that is time sensitive is performed automatically.    There is an old joke that makes this point.  An ER doctor, an Internist, and a Surgeon go duck hunting.  The Surgeon looks up and says, “Look, a duck!” and he shoots.  The Internist looks up and says, “Look a duck...or maybe it is a mallard or a goose!”  And then he finally shoots.  The ER doctor looks up and shoots and then says, “What the hell was that?!”  The ER doctor is trained in certain situations to act reflexively, such as acting to save someone who is bleeding profusely after a bad accident and whose life depends on very swift action.  In those types of cases you want a physician who acts even before taking the time to think too deeply. 

    

But most of the time, the ability of a doctor to stop and think is important and may be critical to getting the best care.  For many people we help, our ability to coach them on how best to encourage their doctor to stop and think, is paramount to their having a productive trip to see the doctor.  

You may believe that doctors will always stop and think however, when a physician is seeing many patients a day and most of them are “routine” and time is limited, it is hard to really think about each and every patient in a unique way.  This past week I saw my cardiologist for a routine, yearly appointment which actually occurs about every year and a half as I keep putting it off because I have no present cardiac problems.  I have a history of coronary artery disease and had a coronary stent placed in 2001.  My cardiologist is a caring, smart professional who I have, in the past trusted with my life.  My goals for this appointment were to discuss with him my medications to see if we should change or perhaps eliminate some of those medications.  In his busy day, however, I was healthy, doing well, and he just wanted to get to the next patient who probably had more immediate needs than I did.  I did not get the thoughtful doctor that this cardiologist has been in the past.  His attitude was you are doing fine so just keep doing what you are doing and I will see you next year or so.  I do not know if he had an emergency waiting for him at the hospital or if he was just harried from a busy day and from personal life matters.  I only know that no matter how hard I tried, I could not engage him in the discussion I needed.  I could not get him to stop and think and really listen to my concerns about being on medications, all of which have potential side effects, and my potential ability to do without some of them. 

So I now consider my next move which will probably be to call him and talk to him about it and ultimately to switch cardiologists if I am not comfortable with his listening to me and really thinking about me.  When you are a patient, it should all be about you (or me if I am the patient).  Don’t be embarrassed by that.  Don’t be self-conscious about it.  It really is all about you when you are the patient.  You go to a physician in order to get the benefit of their knowledge, their experience, their skills, and their active evaluation of you, however healthy or sick you are at that moment in time. 

So a real trick for people, who you help, is to give them ways to encourage their doctors to stop and think.  There are a number of techniques for accomplishing that:

1. Help them develop questions that they bring with them to an appointment.  They should have them written down and they should make it clear with body language and bearing that they do not plan to leave until the list of questions is answered in a way that is understood. If the doctor leaves the room before they are done, they should politely ask his staff, who will probably come in to usher them to a different room or to see them out, that they need to continue talking with the doctor to get questions answered. 
2. Coach them to be honest.  If they have to say, “Doctor, I feel like you are not listening to me and you are rushing out of the room instead of helping me understand what I need to understand in order to follow your advice”, encourage them to just say it.  They should not feel embarrassed or feel ignorant. 
3. Help them be confident.  It can still be a bit intimidating to go to the doctor.  When your clients are confident and less likely to be intimidated, they are likely to be better at encouraging their doctor to stop and think. 
4. Tell them to be pleasant but direct.  Getting very excited and angry will only get someone labeled as irrational and that is harmful to getting the best care. 
5. Ultimately, if your client is unsuccessful, they should think about switching to another doctor.  A doctor patient relationship is personal and sometimes two people are just not a good fit.  While technical knowledge is important in a doctor, the ability to communicate with a specific individual is just as important.

Good, thoughtful physicians know the importance of listening, and thinking as critical parts of diagnosis and treatment.  As Dr. Feingold put it in his article, “I could not practice medicine without a computer because so much information is now available it is impossible to remember, or even be aware of all of it.  However it is still the findings culled from the history and physical examination that remain the mainstay of leading the patient’s physician to the correct diagnosis.  That means going back to the basics, taking the time to listen to the patient and doing a thorough history and physical examination.  After gathering all of this essential information, then new high tech studies can be used more effectively and efficiently.”

So help your clients help their doctors to be better doctors.  Help them remind their doctors to stop, listen and think.  

Stories, Science, Disease, and Illness

The science of medicine has made unbelievable strides in understanding disease and even controlling it.  However there is a difference between disease and illness.  Illness is the personal experience of disease and it must be understood through stories as well as science.  It takes stories to help people through their illness and to apply knowledge built through data and inquiry into effective treatment and effective decision making.  Creating the right structure to study the effects of stories can only help us in understanding the very personal stories of each and every person who has to deal with illness.

So I was very excited when I read an article entitled, “All Stories Are Not Alike” published in the journal Medical Decision Making.   The article acknowledges the strength of people’s stories and creates a framework for understanding how stories help people make medical decisions.  Stories are real ways to communicate medical facts and make them understandable for people in a personal, real-world way.  Stories can be used to point out scientific data that may be helpful to that person’s individual circumstance.  And just as science has a structure and a language, so do stories.  The article sited makes a wonderful effort to better define that structure and language. 

When each of us thinks about the story of our own life, or our own illness, it is rarely if ever about only one factor and almost never about the disease!  Nobel Prize winning author Elie Wiesel recently wrote a book entitled, “Open Heart” which tells the story of his emergency heart surgery at age 82.  The book is his story, so it is only peripherally about the proper way to treat heart disease.  Real life gets in the way of his treatment as it does for all of us.  When his cardiologist calls him breathless and tells him to get to the Emergency Department of Lenox Hill Hospital immediately and that a team of doctors is waiting there for him, the brilliant author writes that he does not.  “And so I nevertheless steal two hours to go to my office.  I have things to attend to.  Appointments to cancel.  Letters to sign.  People to see – among others a delegation of Iranian dissidents.”  For Wiesel at that moment, his own commitments are top of mind rather than his urgent need for medical care.  That is no different than the mother who, even when extremely ill will worry first about picking up her children at school.

In his book Wiesel talks about the love of his family and own moral struggles instead of the best practice guideline for coronary artery disease.  He writes about the visit of his five year old grandson when he is still in the hospital, with his grandson saying, “Grandpa, you know that I love you, and I see you are in pain.  Tell me: If I loved you more would you be in less pain?”  Wiesel then writes, “I am convinced God at that moment is smiling as He contemplates His creation.”  That is more important to Wiesel’s story than the technical aspects of his disease. 

His story is not all that different than other’s stories (although his eloquence in voicing it is unique) and our ability to listen to people’s own stories, relate them to the care they need, and address them using data, medical studies, and “facts” are what makes successful treatment of illness and not only disease. 

The key to really helping people when they are faced with illness is the ability to understand all of the elements of their illness, even if it includes a feeling of commitment to meet with a delegation of Iranian dissidents.  It involves the skills of listening to their story and then adding into the framework of their story the medical facts and guidelines when and how they apply.  It is in letting the story unfold in a way that reflects and respects the values of that person.  Only then are scientific medical facts useful and helpful.  Only within the context of the story can medical science be used to lift the human body and spirit.