Grieving the Loss of Trust

We come here today to memorialize a time when medical care was based on a sacred trust.  This is a celebration of a concept so basic to care that for centuries, trust was the only aspect of medical care.  Before the advent of modern medicine, the sacred trust between a physician and a patient, and the physician’s knowledge and experience with helping a person through the illness journey was all there was.  There were no imaging exams and lab tests to make a diagnosis.  There were no effective surgeries, antibiotics and other modern medicines.  There was only the physician, laying on hands, able to predict the course of an illness, and staying with a person through their suffering. 

    

An article this week in Bloomberg Business Week reported on the increasing tendency of consumers to order their own blood tests.  While I am a staunch advocate of patient autonomy and of shared decision making, and believe that consumers should be able to order their own tests, as a physician I wonder why anyone would want to do so.  Lab tests are most useful when they are ordered for a specific purpose, understood by both doctor and patient, and when the results are openly discussed by a patient and a health professional.  I, as a physician, never order my own tests even though I understand how they are used and what they mean.  I trust my physician to work with me to order tests and to interpret the results together.  The objective, caring perspective of my physician is critical to me as I decide what to do about my ailments.  I suspect that this trend towards self-service medicine is a symptom of a larger malady – that being a loss of the trust that once defined medical care. 

At one time, the relationship that you had with your doctor and your nurse was seen as sacred.  You opened yourself up in every way, physically and emotionally to your health professional and believed that they would help you and have your best interest at heart in everything they did.  You truly bared your soul as well as your body in the hope that the physician would help you survive – even thrive – with the fragile vessel that is the human body.

 

But today, physicians are told that they must not have their total focus on you, the patient, but also on the population.  They are taught that they must adhere to the bio-medical rigidity in specific care paths and be efficient while doing so, rather than address the unique values and hopes of the individual they are treating.  Patients are told that they must take responsibility for their own care, must embrace self-service and use apps and the Internet instead of a trusted professional, all for their own safety and the greater societal good.   No wonder the trust is dying. 

Michael Millenson wrote a blog post this week entitled, “Parsing Patient Engagement: Better Compliance or Better Decisions?”  Michael is an expert on quality of care and rightly notes that quality care is not about technology but about how that technology is used in order to transform the health care experience.  He wrote, “Transformation in the doctor-patient relationship must recognize the importance of the medical evidence, the patient’s preferences and values and the doctor’s clinical experience.”  It is hard to see that in self-service lab tests. 

 A client at Accolade, my company which uses technology to put human relationships first, had a bad experience with a primary care physician.  The Health Assistant, who is that client’s trusted resource, came to me for help.  The client and his wife had seen a new primary care physician and believed that the physician had over-tested them for financial gain.  I reviewed the claims and found that all the ordered tests were consistent with a first new patient visit.  I then spoke to the Health Assistant and suggested that the real problem was that they did not trust this physician.  Upon further discussion with the Health Assistant who knew the client as a person, I learned that the client and his wife were relatively new to the United States, having emigrated from India.  The husband spoke heavily accented English and the wife spoke very little English.  The primary language in their household was Hindi.  We then found them a new primary care physician who was Indian-American and who spoke Hindi.  They loved and trusted their new doctor and no issue of testing for financial gain came up again. 

The sacred trust in health care is the secret ingredient that allows care to be effective.  The loss of trust that I see saddens me but also leads me to action.  For trust hopefully is not dead.  It is on life support but we can work to make it central to medical care once again.  To again quote Michael Millenson’s blog post, “clinicians—with a persistent nudge from patients and payers – will have to lead the transformation themselves.”  I include in the term clinicians, the professional Accolade Health Assistants, and all health professionals, not only physicians.  We must all lead the effort to ensure that trust remains a central element in all of our health care.  Without the trust, all of the apps, new tests and self-service options will only take us into worse and even more expensive care.  

Reconciling the Languages of Medicine and Business

Many years ago, I went to business school to learn the language of business.  I did learn that language and can talk about EBITDA as well as the next guy.  I also learned a different way of thinking than the method of thinking I learned in medical school.  I worry now that, as we attempt to have doctors be more like business people, we may lose a central ethic of medicine – the focus on the individual in need who sits in front of you rather than the population you serve. 

I was a busy practicing doctor when I decided to attend the Northwestern University Kellogg School of Management in the 1980s.  I was trying to understand the language of budgets, strategy and planning that I found myself discussing at meetings I attended as part of my various roles in the hospital, in national health policy meetings I attended, in the insurance industry and in government.  I knew that in medical school, while I had not learned to “be a doctor” I had learned a way of thinking and a language that was needed in order to truly gain the experience to become a physician.  I went to business school to learn the way people in management thought and to learn their language.  I say their language because I never planned to be in that world; rather I planned to stay a practicing doctor while being more effective in the business and policy meetings I attended. 

A Yiddish proverb states, “Der mentsh trakht un Got lakht” which loosely translates to “Man plans and God laughs” and so it was for me.  I planned to stay in the practice of medicine and have found myself for the past twenty-five years instead in the world of business and management.  I never forgot however, the single patient viewpoint and went into the management world believing that I had to be the voice for that single patient who could easily be lost in the reams of data and trends that are part of the business and policy world. 

The challenge of applying a management way of thinking while also thinking like a doctor was exemplified by three articles published recently.   An excellent article entitled “What is the Right Number of Clinic Appointments” by Ishani Ganguli, Jason Wasfy and Timothy Ferris from Harvard Medical School started my thoughts racing to the difficulty of attempting to improve systems while keeping the individual patient at the forefront.  I know that this group at Massachusetts General Hospital has been a strong voice for excellence in primary care for many years.  In the article the authors make an argument for optimizing office visits and comment on the savings that could be generated by Accountable Care Organizations if guidelines were followed for return office visits.  They suggest that even though the United States has low visit rates by international comparisons, the rates may still be too high.  They suggest more studies comparing scheduling data to individual disease diagnosis and treatment guidelines in order to examine variation in clinician-specific follow up rates. They do put in the perfunctory statement that “of course individual clinical judgment should always inform the frequency of visits” as a safety valve.  However I find that a bit disingenuous.  We know that doctors who deviate from the guideline norms are at risk for lower pay and at risk of being labeled a “bad doctor.”  The scarlet letter of deviating from guidelines can inhibit seeing patients more frequently even when that is needed for optimal patient care.  The authors, while thought-leading physicians, are only applying population analytics – a management approach – rather than incorporating the medical approach that requires addressing the unique needs of each individual.

    

“The Ethics of Patient Care” by William T. Branch, another excellent voice in primary care ignored the population/management approach and focused on the individual human needs one is supposed to learn in medical school.  He describes the need for “small acts of kindness during the course of caring” as an ethical requirement of medicine.  He goes on to say, “For the physicians, mastering these skills required no less effort than mastering medical science.  Keenly observing patients’ emotional concerns, responding appropriately and always compassionately and respectfully, and listening attentively to patients requires years of willful practice before becoming habitual.”  He speaks of the “moral mandate” of physicians, and I would add of all health professionals, that should inform the “whole of a physician’s work. “  Dr. Branch speaks from a medical, not a business and management perspective and ignores the challenge of limited resources in our healthcare world. 

We then have the business perspective and the medical perspective.  Both are valuable.  How do we reconcile them?  The article written by Dr. David Shaywitz entitled“Lowering Health Care Costs Is Hard Because Every Patient Is Unique” addresses this dilemma.  He notes that people, who have the misfortune to be patients, often have their own ideas of what they want from their relationship with a health professional.  If, in outcomes studies we only look at the pure physiology, we miss the outcome desired by the patient.  This is especially true in outpatient, office medicine.  Dr. Shaywitz asks, “Will value scientists ultimately capture or obscure what most patients seek from their physicians?”  He finishes his article by stating that the answer will “require the ability to embrace the messiness of disease and the complexity of patients, rather than providing idealized solutions that impress in the boardroom but flop in the examination room.” 

Most studies of variation and optimizing care focus on single disease states.  In the article by Ganguli, Wasfy and Ferris they take this approach of focusing on guidelines for visits related to single diseases and use the example of stable angina.  They do not account for the messiness of people who have multiple illnesses, multiple risk factors, complex work lives, complex social structures, and emotional fragility.  The “messy patient” (from an analytic point of view) is often more the norm than the idealized single disease patient.  In my own experience, I am always struck by the broad variation in disease even before one entertains the context of a person’s life.  In one study we recently did at Accolade, looking at one company of approximately 50,000 covered lives, we found that the top twenty-five diagnoses only accounted for 57% of the total medical costs.  The list of all diagnoses for this relatively small number of people ran into the hundreds.  It turns out that the uncommon, in aggregate, is common in medicine.  When you add in the life context of the person, the individual variation is immense.  Into that cauldron of variation, a good physician must also be looking for the unlikely event that may not be seen on a trend line or in a data report that can be of high consequence to the patient.

Unless we are more attuned to the language and particular challenges of medicine, within the business and public policy world we will develop solutions that do flop in the examination room.  Those types of idealized solutions will ultimately lead to failure in the business and policy arenas as well.  Solutions must work for the complex individuals who become patients in order to be successful for millions who need care.

What is the Heart?

This year, at the annual meeting of the American College of Cardiology (ACC), Dr. Abraham Verghese, the noted infectious disease specialist, author and Vice Chairman of the Department of Medicine at Stanford Medical School gave the keynote address.  He entitled his talk, “I Carry your Heart” after the ee cummings poem and spoke about what “heart” means.  When you speak to a group of cardiologists who are among them the most knowledgeable heart specialists in the world,   it is an act of courage for an infectious disease expert, and a novelist, to come and tell them what “heart” means.  But his talk was about the two types of hearts – the biological heart we study and probe and repair with surgery and with pharmacy, and the spiritual heart that connects us as individuals. 

For many years, Dr. Verghese has written eloquently about the need to retain, and even improve humanism in medicine.  He laments the fact that medical students now spend about 40% of their time on the computer instead of with the patient when they are on the clinical wards.  He worries that it takes an emergency medicine physician an average of 140 clicks of the computer mouse to admit a patient, and that the electronic medical record is losing the patient narrative as it focuses on the numbers and standard algorithms. 

In one interview, related to his speaking at the ACC meeting, Dr. Verghese says, “…Society will judge us poorly 20 years from now.  They’ll look back and say, “You were complicit.  Why did you let EPIC and all these electronic medical records rule your life?  You actually signed up to learn the new ICD codes and plug them in.  Exactly what did this do for patient care?”  And the answer is that it did nothing for patient care.”

The computer focuses on data and transaction capture for billing and review purposes, rather than the flow of the patient’s story and their journey through illness.  It monitors and directs the use of standard algorithms in a world in which patients are not standard (see my previous post).  This altered focus is changing the heart of medicine.  It is changing the spiritual nature of the doctor/nurse/patient relationship to a series of standardized tasks that can potentially be done without human intervention at all.  There are those, such as Vinod Khosla, who speculate that this is a good thing: that the computer dynamic will remove all errors from the clinical pathways that the limited knowledge of any single physician is prone to.  That view however, leaves out a critical element in helping the sick overcome their illnesses.  It leaves out the human connection we all need. 

Clearly no one, least of all Dr. Verghese, is suggesting we give up the strong potential for technology to improve care.  Rather he is saying that in addition to having the best MRI of the heart, the best computer algorithms to guide treatment, we need the human understanding of a person’s story, including their struggles, their hopes and their dreams, to truly treat the person.  He quotes Paracelsus who advises physicians, “To love the sick, each and every one of them, as if they were our own.”  It is hard to “love” the individual patient if your view of them is only gained through the data on a computer screen. 

Physicians and nurses, and all health professionals are given the privilege of knowing people in ways that few others do.  People open up their hidden vulnerabilities; they disrobe in the exam room and tell their doctors and nurses secrets that they do not even tell family and friends.  They look to their health professionals to treat those vulnerabilities and those secrets with a sacred trust that is exalted above the usual human interactions. That cannot and should not be lost to an information revolution that reinterprets everything into zeros and ones. 

Dr. Seth Bilazarian, writing about Dr. Verghese’s appearance at the ACC meeting, speaks about the lack of enthusiasm, hope and eagerness for the future of many physicians he spoke to at the meeting.  He sees sadness and a sense of resignation among those physicians.  The health care finance experts and computer experts, who are involved in the push towards computer run medicine, while well intended, don’t appear to understand or value the spiritual heart necessary in medicine.  This can create a bleak future for doctors and patients alike. 

Dr. Bilazarian sees some hope in the fact that people like Dr. Verghese are actively speaking and writing about the need to maintain the care of the spiritual heart and not only the physical heart.  I see hope in the numerous efforts to better integrate humanities into medicine, such as the  Business Innovation Factory and Robert Wood Johnson Foundation “Narrative Play Book” effort and in efforts such as ours at Accolade to develop operational systems that focus on patients as complex, unique, autonomous people.   

The challenge is that EPIC and other computer systems do not encourage the building of trust that comes with a patient narrative and that is central to the art of medicine.  We don’t find a measure of the spiritual connection in a claims database.  As health professionals, we lose the human touch if our focus is on the computer algorithm, the clicks we must make, and the strict adherence to guidelines.  We must, instead fight to keep our focus on learning who the patient is and not only what their disease is; what their concerns and values are, and what their social support is like.  It is imperative now, for everyone, not only health professionals, to demand that the human aspect of care be maintained and elevated in order to create the best care for all. 

Standard Medical Policies and Non-standard Patients

Healthplans are dependent on guidelines and standardized medical protocols and use these protocols to decide on payment.   This has led to both better quality care in most cases, and a total breakdown of quality for those few people who don’t fit the protocols. 

Most of these protocols are guidelines rather than standards.  A standard is a specific mandatory rule meant to ensure consistency and quality.   It is relatively low level and designed to always be followed.  While there are many standards in medicine, most of these are embedded in the training and practice of every doctor, nurse, therapist and other health professional.  It is usually not necessary to write formal medical policies for standards as most standards fit into the “standards of care” that are part of medical licensure, overall quality review and standard insurance contracts.     A guideline, in contrast, is a recommended, non-mandatory rule or set of rules that assist in ensuring consistency and quality and is often more complex, nuanced, and leaves room for individual doctor/patient decision making.  Guidelines are the basis for the overwhelming volume of healthplan medical policies and at least theoretically should not always be followed when individual problems require more customized approaches that do not fit the guideline. 

Healthplans develop their medical policies based on scholarly developed guidelines and expert practitioner committees, but often conveniently forget that guidelines are non-mandatory.  Instead they administer them as standards.  While they have appeals processes in place, the appeals are often administered to test whether facts were missed that allow the medical policy to be followed, rather than as a method to test whether the medical policy, i.e. the guideline, should not be followed due to the unique aspects of the situation.  This is wrong from a patient care perspective, and is a subversion of the meaning of a guideline. 

I see this far too often in my work, and even in problems that family and friends have in their journeys through the healthplan and health care systems.  Recently this challenge of healthplan guidelines being administered as standards affected someone very close to me who has a rare type of seizure disorder. Let’s call him “Al” for privacy’s sake.   Al has been on a relatively new anti-seizure medication for more than a year.  This seizure disorder was hard to initially diagnose and then hard to treat due to the very unusual type of epilepsy.   At the time, more than a year ago, I undertook a national search to find the best epilepsy expert to diagnose and treat the disorder. I found someone who was the leader of an international epilepsy program, who published a massive number of studies, had numerous grants, had been an author of books about epilepsy and who had trained many of the leaders in the field worldwide.   Al is now under his care.    The drug was approved for payment by the healthplan a year ago and if it had not been approved would have cost over $700 per month, more than Al can afford. 

Now, more than a year later, the healthplan has decided to deny further payment for the medication.  The medical policy requires that this drug only be used as a second drug in addition to another first line drug.  By that logic, Al would need to be on another drug before this particular medication could be paid for.  Thus it could be approved but only by prescribing another drug in addition to the present drug at more cost and more risk to Al and more cost to the plan.   

When the denial was communicated via mail, Al first asked himself, “What did I do wrong?”  If is amazing that for many people, the first instinct is to feel guilt and anxiety over the denial when anger may be the more appropriate emotion.  Al did nothing wrong and has followed healthplan rules and physician’s instructions at every step of the process.  He has just had the misfortune of having a disease which does not neatly fit into the medical guideline and the policy on which the payment decision is based.  If the guideline were being used correctly, as a non-mandatory rule that acts as a quality guide, the judgment and knowledge of the treating physician, who in Al’s case is a national expert in epilepsy, would be allowed to override the policy.  Unfortunately, healthplans all too often do not work that way.

At any point in their life, a person may fit into the category of someone who is benefiting from the protocols or fit into the category of someone who is being hurt by the adherence to a rigid protocol.  It is not the case that only certain people will be hurt by the misapplication of a guideline.  Rather any of us may be affected by the type of low probability high consequence event or illness that doesn't fit existing guidelines and the resulting healthplan policies.  At that point, people should not be afraid to reach out and get help in reminding the paying organizations that the medical policy is a guideline and not a standard and that rigid adherence to the policy is neither responsible nor even safe for people when they are in the throes of that unusual illness or circumstance.