The horror of forgetting patients

“Against the claim that caring belongs to morality and even constitutes its core, I would like to present a counter claim, according to which we need morality precisely because we do not care. That is, we usually lack an attentive concern for the well-being of most members of the human race.”   –Avishai Margalit, The Ethics of Memory

Yesterday I saw a patient who is suffering from metastatic lung cancer. He and his family bared their souls about mortality, suffering, and how much treatment is enough. This was not just another day at work, but a profound existential experience that recalls my original motivations for medical school from my admissions essay so many years ago. Today, I cannot recall his name.

This happens to me all the time. While I am with a particular patient, I have honed the skill of being fully present, and for that hour, nothing but this person, and these diseases, occupy my consciousness. Yet later, after I have seen a few other people with equally gripping human tales, I remember many of the details of lab abnormalities, CT scan shadows and medication side-effects, but the name and face often escape me. Sometimes this horrifies me. Yet it is not so uncommon amongst health care professionals who routinely grapple with 10-20 suffering people daily.

What should we remember? Does memory relate to caring, i.e. do we have to remember to have “cared”? These questions become extraordinarily important for the Jewish philosopher Avishai Margalit in the context of the Holocaust and the fraught questions of societal memory. Margalit begins his reflections with the story of a military commander who is interviewed about a combat where one of his soldiers was killed. The commander cannot recall the name of the soldier. “There followed a flood of outrage directed at the officer who did not remember. Why wasn’t the name of this fallen soldier ‘scorched in iron letters’ on his commander’s heart?”

Does my forgetting of my patients’ names indicate a lack of caring? On what level do I have an obligation to remember a name of someone suffering? On a mundane level, I think I am particularly poor at this task compared to my colleagues, and may suffer from mild prosopagnosia. Yet, certainly there would be a difference in outrage if I could not remember my own daughter’s face or name (which I can!). Margalit introduces the concepts of “thin” and “thick” relations we have to other humans:

“Thick relations are anchored in a shared past or moored in a shared memory. Thin relations, on the other hand, are backed by the attribute of being human… and some attribute of being human, such as being a woman or being sick.”

Thick relations form our ethical duties to our “near and dear”. Thin relations constitute our duties to strangers and are guided by moral rules. Where does the physician-patient relationship fall, ethical or moral? Patients come to me because they are 1) human and 2) sick. Those are the only types of patient I see! On this level, I treat them and move on. And yet, has anyone used one of these e-visit type online apps that present a series of questions and then diagnose a condition? Welcome to “thin” medicine.

Surely any good clinician is also “thickly” entwined in the day-to-day concerns of a patient, in their “shared memories”. The Hippocratic Oath engages us on a thick journey with our patients. And it does not stop there. We get to know them in so many ways and through compassion, we “suffer with” them. I believe that some of the most important relations in our lives are precisely so important because they exist in that liminal area between thick and thin. We interact first on a strictly moral level, such as when we first meet a patient.  Then, with time, the relationship “thickens” as we care more and more about their personal outcomes and happenings. Importantly, the physician-patient relationship never becomes entirely thick, for that is the path to inappropriate interactions, the blurred therapeutic line, and outright abuse. We all know some colleague or interaction which has fully congealed: loaning a patient some personal money, giving “VIP” treatment, or giving antibiotics over the phone for a friend. Even worse, we know doctors who float on the surface of a very thin gruel: those who won’t take an add-on patient at 4:30pm, accepts no sliding scale fees, and the worst — lack of empathy in those that treat diseases rather than people.

So remember, don’t forget. But it’s ok not to recall a name from time to time.

For Frail Patients, it’s Karl Marx vs the Cheesecake Factory

People with multiple chronic medical conditions accumulate hospital visits like RVs collect bumper stickers. Tokens of “been there, done that”, both the stickers and the reams of discharge instructions function to conjure memories of past exploits in hospital corridors and national park access roads.  Neither the stickers nor the medication lists materially improve the bearer’s current situation. Which is to say, the frail complex patient receives disjointed care that can be beautiful for a week, but that does not last beyond Labor Day.

Mr. S was a 69 year old veteran who had been hospitalized 24 times for pneumonia. “I get sick real quick doc,” he said, almost with pride.  Each time the health system performed admirably, with paramedics triaging and bringing him to the ED, where he got antibiotics for sepsis, and was efficiently admitted, treated and discharged home.  He gave the hospitals high marks for satisfaction.  And yet, the whole cycle just kept endlessly repeating, with another fever and another hospital stay. I started visiting him at home, and learned about his chronic pain from an old car accident, with narcotic use and frequent bouts of falling asleep on the couch. I learned about the daily RockStar he uses to try to stay awake after his oxycodone, and then the stomach bloating and gas which he treats with strong acid blocking medication, twice daily.

This is a man over-treated by medicine, not under. His acid blocker allows stomach bacteria to multiply, so when he goes semi-conscious with pain medication, he aspirates from stomach to lungs and then is soon febrile, not breathing well, and calling the ambulance.  Over months we changed his diet, got him off the acid blocker and off the narcotics.  He is awake most of the time now and has not been back to the ED.  After my last visit he asked me to hurry up because he was going out to cut a Christmas tree with his grandkids.

I now do home-based care, bringing medical knowledge to patients’ real lives rather than trying to force cookie cutter solutions on them by following the model of the Cheesecake Factory, as has been proposed elsewhere.  My medical group contracts to only take care of the most frail patients with multiple chronic conditions, the ones costing the American health system a tremendous amount of money with little to show for it.  We have found that by becoming intimately involved in their lives, at home, surrounded by family and their unique living situation, we can reduce the utilization of expensive health resources while, at the same time, improving their quality of life.

Why does the factory model of care often end up worsening lives rather than improving them? Because standardized care employs abstractions. Most of medical care starts from the standpoint of the disease, like pneumonia or cancer. But diseases are actually conceptualizations, a step beyond the material existences of people. A person develops a fever and cough; we conceive of this as “pneumonia”. But patients live this as “spirits”, or an annoyance, or a punishment, or a million other things. Philosophy attempted to ground itself in materialism two hundred years ago with Karl Marx:

“We do not set out from what men say, imagine, conceive, nor from men as narrated, thought of, imagined, conceived, in order to arrive at men in the flesh. We set out from real, active men, and on the basis of their real life-process we demonstrate the development of ideological reflexes… phantoms formed in the human brain.”  — Karl Marx, The German Ideology 1847

As I re-read Marx I am fascinated by how spectacularly wrong he was, despite his fundamental insight that someone’s historical and material conditions of life determine their existence. At the same time as he insisted on the specificity of historical circumstance, he mistakenly lumped incredibly varied peoples into “classes” such as bourgeoisie and proletariat. The actual material conditions of lives turned out to be different in Russia, and Vietnam, and with Hispanics and Norwegians, and you and me and in fact, everyone. In the same way, what the medical system calls “pneumonia” will never signify the same thing in different cultures and for different people. When we treat every pneumonia with the “standard of care”, antibiotics, we are making the Cheesecake Factory mistake: lumping abstractions together rather than dealing with someone’s historical and material situation.

Here is what one provider charted after a recent home visit: “Patient continues to minimize amount of beer he drinks, stated that the 3 empty beer cans at bedside are all he’s had in days. However, 2 garbage bags-full of empty beer cans seen in kitchen. Neighbor buys him beer.”

The insight into someone’s historical and material life illuminates far more than any abstract diagnosis of a disease in this case. The hospital frequent flyer has had her abstractions treated thoroughly, completely, and repeatedly.  But she has not had the “material conditions of her life” confronted nor addressed.  Until we do, medicine will continue to be a cheesecake factory which offers up sweet treats rather than solid life-sustaining fare.

Stuck on East Burnside

Gridlock on my route from one home visit to another.  East 3rd and Burnside. Clutch, brake, clutch, accelerate.  Illness behind, illness ahead.  The Portland winter is dark and wet.  The gutters glisten from reflected headlights.  Not even the water moves fast here, pooling into the low spots, laconically swirling as a tire passes only to settle back with an oily sheen.  Abdominal pain was the complaint.  The final diagnosis after an hour in the apartment, talking and listening, examining some lab tests: constipation.

The inability to have regular bowel movements has emerged as America’s most common invented illness.  The mammalian bowel is built to move, constantly.  It starts moving before birth and keeps moving until death. Somehow the modern urban human has managed to slow and even stop this inevitable physiological process.  The societal cost of our constipated populace is outrageous.  I am currently providing home visits for the fragile elderly, trying to help them stay well and out of the hospital.  And believe me, constipation can put people straight into intensive care.  I have worked everywhere in medicine, from primary care to hospitalist to nursing homes.  Constipation gums up the works everywhere, causing pain, then nausea, escalating worry, escalating white blood counts, creating abnormal lab tests, all resulting in long and expensive medical examinations and CT scans with the final diagnosis: full of poop.

What created the constipation crisis?  Well, the opioid epidemic has not helped, as narcotics do slow the bowel, but most people who can’t go are not taking morphine.  No, the origins of bowel immobility lie in immobility itself.  Like most modern chronic diseases, we stop moving when we stopped moving.  The inactivity of the Western lifestyle is astounding and the consequences inevitable.  Never before in history have so many people moved so little.  We stare at computers, we drive cars, we take elevators. We operate machinery.  From a chair, pulling levers.  Kids don’t play outside or run around. Adults don’t walk to work or the store.  And the elderly often never even leave their chairs.

Hand in hand with immobility, our society has created processed food.  We stopped growing food, harvesting food, and even preparing food.  So prepared food appeared, and so we ate fewer fresh foods, with less fiber, and eventually… people don’t move, they eat starchy glue-like foods, and a cottage industry of laxatives and consultants was born.

The traffic on Burnside is constipated as well, not moving except in random fits and starts.  Traffic was meant to flow, just like the intestines.  When it does not, the result is irritation, just as in the colon where I have seen stool impactions create angry, red tissue, cramps, and pain.  They have the same ancestry, the constipated bowel and the gridlocked street.  The same factors created them: humanity’s immobility and poor urban planning.  If we walked or cycled to work there would be no jam up.  If we had planned smaller urban pockets that preserved agricultural areas, we would have fresh food with fiber to eat rather than endless shrink-wrapped starch.

Humanity suffers from many real maladies that occur due to biological inevitability.  Cancer, that most captivating of all diseases, appears to result in a random way from the structure of cell division and DNA storage.  Heart disease results from a side-effect of cholesterol which is required for cell membranes.  And so on for most human disease.  But not constipation.  Mammalian evolution never imagined constipation as an issue. As modern hygiene and antibiotics increased the human lifespan, still constipation only rarely occurred.  Until we outfoxed ourselves by creating too many modern conveniences, and sank inevitably into the comfortable couch of the 20th century.

Job security, I think, as I flick on the turn signal to finally exit this self-inflicted misery of East Burnside.  We have met the enemy, and he is us.

 

The Medicalization of Disease

“A condition counts as a disease independently of whether there is safe and effective treatment.”   —Journal of Medicine & Philosophy, August 2017

What is a disease anyway? Mrs. Jones is 90 years old and frequently experiences episodes of chest pain. She has numerous partially blocked coronary arteries, and her physician has told her to come to the emergency room because she might be having a “heart attack”. Indeed, each time she reports to the hospital, her troponin, the heart enzyme whose release indicates damaged heart tissue, is elevated so she is admitted and “treated”. Except there is not much that can be done. Due to the poor function of her kidneys and the risk of the procedure, she can’t really have more angiograms and stents put in her arteries. Her medications are tweaked this way and that. She is a sweet old lady and the nurses love to have her on their floor. Eventually she feels better and goes home.

Does Mrs. Jones have a “disease”? Or is she simply aging? In the recent words of senator John McCain, “Everyone dies of something eventually.” As a doctor, I was never trained to care about the definition of disease; we just pragmatically did whatever we could for the patient in front of us. There is a program that allows pediatricians to write prescriptions for food for malnourished kids. “Protein calorie malnutrition” to some, to everyone else, simply hunger.

But what happens when every microscopic cellular malfunction starts to count as “disease”? Prostate cancer is a classic example of cells going bad, turning into “cancer” which we can detect with a PSA test, and even with a biopsy, but that only sometimes harm the host body. Is asymptomatic prostate cancer a disease? If so, then nearly every decay and decline of the body counts as disease as well: grey hair, wrinkled skin, and “age spots” that fascinate grandkids when they appear on their beloved grandparents. Aging itself then must be a disease, yet is also the appropriate and natural function of a human body. Death becomes a paradox for medicine, both expected and a disease to be combated.

Neither medicine, nor the larger culture, have come to terms with this conundrum. We attempt to prolong life at all costs while battling the villain of diseases that multiply exponentially as we age. Yet, the fight eventually always becomes shadow boxing because you can’t really treat senescence. The paradox inherent in aging has caused the public to have astonishing expectations of medicine. Eighty year old patients who have smoked their entire lives ask about getting a lung transplant. Eighty-five year olds start hemodialysis after their kidneys finally malfunction completely. The family of the end-stage cancer patient will only discuss the next experimental treatment option but not end-of-life.

The corollary to medicalizing disease is the extension of treatment to all of life. When “disease” applies to aging and other natural processes, then the whole sphere of life becomes a medical condition, and so our entire lifestyle becomes a “therapy”. Every action I take becomes a therapy. Witness the proliferation of lifestyle medicine, dietary cures, and yoga for childbirth. Witness the supplement and herbal industries that promise a treatment for symptoms, sensations, moods and even existential crises. We have indeed become entirely medicalized.

To cope with this medicalization there are competing definitions of disease that allow for the primacy of the patient experience: “Disease is… the suffering or loss of function that brings patients to the clinical encounter…” When patients suffer, doctors try to help, so anything that a patient experiences, we are willing to treat as a disease. Still, as professionals, scientific professionals, physicians aspire to a critical process and we need to add this to our definition.

“Whether or not we label a certain state as a ‘disease’… results from an ongoing interaction between… people’s value considerations and knowledge that can confirm… disvalued states on a scientific basis.” –Journal of Medicine & Philosophy, August 2017

Patients present with “disvalued states” – pain, swelling, blood pressures – and we must use a scientific process to complete the patient interaction. Not all symptoms are diseases, nor are all human conditions reduceable to disease. In the modern world, the physician’s role is more often to un-diagnose, and help people come to terms with the possibility that they do not have a disease, rather than that they do.

Clinician Competence without Comprehension

Do you have pain or burning with urination? Yes/No.  Do you have diabetes or an immune disorder?  Yes/No… So goes the online app that “interviews” a patient and determines if she has an uncomplicated urinary tract infection that could be treated through an “e-visit”.  Computerized algorithms such as these are starting to appear everywhere, in outpatient urgent care, in inpatient quality checklists, and on the web, promising “immediate care.”  These algorithmic diagnostic assistants are not perfect, but the best ones do possess some sort of competence in performing the healing task.  How much of the doctor’s touch will they be able to replace?

As pure calculators, pure computers that simply follow instructions, none of the apps have “comprehension” of what they do.  As machines, they cannot reflect on their roles or duties or results; they simply calculate by following instructions, branching and looping, at lightning speeds.  A certain portion of a human provider’s skillset also involves nearly mindless memorization of algorithms: steps to follow in pursuing a diagnosis or treatment plan, remembering best-practice guidelines, or knowing the pattern of clicks to use in an EMR. How much of the providers skills involve algorithmic competence without global comprehension, and thus are susceptible to computerized replacement?  A recent editorial in JAMA addresses this question in the context of errors that Machine Learning algorithms make. Can clinicians perform competently without holistic comprehension of a patient’s situation?

Two particular thinkers have illuminated our world’s dependence on competence without comprehension, Charles Darwin and Alan Turing.  First, Darwin realized that blind evolution could create increasingly complex biological systems which appear to have been intelligently designed, but don’t have a designer.  Genes do not comprehend anything, and yet can be remarkably competent in solving the environmental problem of survival and self-propagation. Next, Turing realized in 1931 that a simple mechanical device, the simplest computer, which executes only three instructions, increment, decrement and branch, could calculate anything. Today’s powerful smartphones and mainframe servers are still just Universal Turing Machines, mindlessly executing simple algorithms, albeit at mind-boggling speeds.  Turing’s insight consisted of the realization that complex, and even seemingly “intelligent” algorithms, can be built up using processes with absolutely no comprehension – increment, decrement, branch.

“Both Darwin and Turing claim to have discovered something truly unsettling to a human mind – competence without comprehension.”   -Daniel Dennett, From Bacteria to Bach.

As clinicians, these insights are particularly challenging. How much of what we do involves complex comprehension and not simply algorithmic competence?  So far, our computer assistance involves only straightforward diagnoses such are urinary tract infections.  But it’s not hard to imagine that in a few years these tools will recognize complex disease interactions and even psychological tendencies toward treatment effects based on answers to screening questions.  How far will we be able to push competence without comprehension? Unsettling indeed.

Many levels of medical providers today seeminglhy care for patients quite well without understanding all the complexity behind their actions: medical assistants, nurses, perhaps even physician assistants and nurse practitioners.  But as we follow this line of thinking, we realize that even the most subspecialized expert physician uses abstractions of pathophysiological processes to treat diseases.  I treat heart failure while employing concepts like “neurohumoral” response and “atrial stretch”.  At some point my comprehension breaks down at an organ, or cellular, or molecular, level, depending on how closely I follow the literature for each disease.  There is an argument to be made that ALL medical providers utilize an algorithmic competence at some point, as we approach the limits of our knowledge.  Even more unsettling.

One of the fundamental issues facing medicine in the coming generation will be attempting to understand how and why a human’s synthetic comprehension adds value to the merely competent algorithmic approach.  Are we simply better at emotional empathy than an algorithm?  Or is it our ability to use “intuitive” knowledge? What actually is contextual comprehension, and why is it valuable?

 

How to create medical quality while hardly trying

The need for what we are calling medical “quality” is acute, yet the strategies employed to obtain it are destroying medicine.  Patient outcomes are inconsistent, care varies depending on many factors outside of disease state, and the cost of our medical system is not sustainable.  But to fix this, most health systems employ non-clinicians to audit charts while checking boxes such “A1C<8%?” and “DVT prophylaxis ordered within 24 hours?”  These non-providers then send threatening letters and cut salaries with “pay-for-performance”.  Unsurprisingly, such efforts are not working, and only end up creating distorted physician-patient relationships.  Yet, obtaining improved quality requires only a few key steps.

  1.      Choose strong clinician leaders.  We all have had enough of MBA and PhD types lecturing clinicians about medical quality.  Only practicing providers understand the difficult balancing act of the patient relationship, with its ethical duties, inherent subjectivity, and inevitable stresses.  A physician leader is required to set the tone of quality as the inevitable goal of the physician-patient relationship.  Find a leader who believes this deeply and is willing to have the difficult conversations to propagate it.
  2.      Define an ongoing consensus in your group regarding why you are providing medical care.  This is not the same as a mission statement or a physician compact, or any other document.  A consensus means an ongoing understanding, renewed monthly, daily and perhaps even hourly.  The medical profession often forgets to talk about why we commit our lives to it, and those who say, “I went to medical school in order to help other people,” are the ones you want on your team.  Some others may answer, “I wanted to have a comfortable profession.”  These are not the droids you are looking for.  A team that understands that they are in it for the patients first, will be a team that coalesces around the need for quality.
  3.      Agree that medical care is a process.  Perhaps this seems obvious to many people today, but if so, this is a recent advance.  When I was in medical school, we learned about diseases and people, but the actual provision of care was simply assumed with some magical hand-waving.  We now understand that every aspect of employing scientific tools to help one patient after the next implies an underlying process.  This realization has created an entire industry of process improvement and LEAN techniques that have improved care and patient experience immeasurably.  Remarkably, there are still clinicians around who have not figured this out.  Avoid them.
  4.      Create tools to measure and visualize the process. Useful data regarding how the processes work are essential.  I find that most understand this crucial step by now.  Create tools, then publish and diffuse them.  Everyone, and I mean everyone, from environmental services to the CEO, should see the same process data, regularly.  When we hide process data we give the impression that the data reflect embarrassing individual performance and not group process.  Use this tendency to conceal data as a reminder to relentlessly return to the underlying process.  We unfortunately rely on individual clinician brilliance to make up for increasingly complex cases where the process sophistication has not kept pace with the care provision.  Do not mistake process errors for clinician inadequacies.
  5.      Agree that medical care is not JUST a process.  This step is listed last, but may be the most important.  No one went through years of grueling training to be just a well-oiled step in a process.  And the heart of quality, the heart of the quality that has meaning to most people, resides in the relationships, conversations, empathy, and medical wisdom that exist outside of “process.”  Clinicians burn out when we forget to emphasize this, dwell on this, and celebrate this.  Doctors live for the parts of care that are NOT processes, and patients value them too.  The first 4 steps of creating quality are designed to become transparent so that we can spend nearly all our time in this last one.  A high-functioning medical group hardwires the first four steps as its baseline, and then retains excellent clinicians by cultivating everything that is NOT process: clinical acumen, empathy, continuing education, compassion, service, and professional development.

Notice that none of the steps contain monetary incentives nor payer alignment nor any of these attempts to monetize quality.  Focus on the five steps and you simply won’t need so-called pay-for-performance.

Quality is our religion, don’t try to pay for it

My hospitalist medical group consists of as great collection of atheists, agnostics and skeptics as you will ever find.  But we all agree that quality is our religion.  We believe to our last breath that patient care is sacred and an invaluable gift.  And so, as with all faith, there is no halfway.  You believe, or you stand around scratching your head asking what those other fools are worshipping.  Just so with quality; there is no 50% attempt.  You either believe that providing the best quality care is what you devoted your life to, or you are left adding up check boxes in the EMR to calculate your “quality incentive.”

Hospital administrators increasingly want to “align” their payer reimbursement to physician pay, calling it pay-for-performance, or variable compensation. Payers tie reimbursement to metrics such as readmissions, DVT prophylaxis and many, many others through programs such as MIPS, MACRA and IPPS.  “Why shouldn’t doctors be reimbursed along the same lines?” they ask.

Payers devised incentive payments because of the business case for them: improvement on these metrics means globally better health and less cost, whether that be through private insurance or Medicare.  By focusing on these population measures, we are surely improving the global health of Americans.  But lost in this headlong rush towards alignment is the recognition that physicians, the best physicians at least, the ones that you want caring for you, took an ethical oath to care for their patients and that means quality is an ethical issue, not financial. Doctors harbor a secret golden spark, deep inside, which is our religion: adherence to the sanctity of the physician-patient relationship with its own inherent “quality.”

Clinicians increasingly are employed within a business structure, and are not insensitive to business concerns.  Doctors respond to financial incentives, as do all humans.  Capitalism works better than communism.  But, the administrator’s job is to translate a clinical service into a profitable business strategy.  Nothing in that job description says incentives must be “aligned.”  Administration negotiates reimbursement rates with insurance companies, yet doctors are not aligned by preferentially admitting only those with the highest reimbursement.  The hospital is paid more by documenting every single little patient comorbidity, thereby boosting the “Case Mix Index”; yet doctors are not paid more for a note that includes more comorbidities.  God forbid the day all our incentives are aligned!  The business aspect of medicine follows many dictates that the clinical side does not; “alignment” is not a given.  The best leadership creates a transparent environment that allows clinicians freedom to operate based on the best ethical concern for the patient.  “Aligning incentives” is actually only code for “we have failed to create a business plan that supports a practice environment and so are asking you to do it for us.”

Clearly, American medicine is far from perfect, and even faith requires cultivation. Good medical leadership can help groups improve their quality.  Medical directors should continuously review quality issues, groups can have mechanisms for internal review, and some groups even transparently publish various metrics. The mechanisms for quality improvement are as varied as the types of religious faith.  But no religious faith requires payment.

Paying for faith via “indulgences” was tried by the Medieval Church.  The result was Martin Luther’s Ninety-Five Theses and the Protestant Reformation.  Well, let these be my theses posted on the All Saints Church door: “Do not try to pay me for quality!”  I will rebel and take back my ethical practice of medicine.  Join me in the Medical Reformation. Doctors, find practices that value you for your faith!  Administrators, rip up those compensation plans, and hire a team that believes.  The next time I myself need a doctor, the first thing I will ask is, “Are you helping me because of your Hippocratic Oath, or because of your incentive plan?” I simply won’t go see the robotic box-checkers anymore.

The Church no longer allows payment for indulgences, let’s not start doing it in medicine.