Inside and Out

77 year old Edward Tripp had been to the emergency room with chest pain last Friday night. It was relentless, aching, and involved the upper part of his left chest.

He had no cough, fever or shortness of breath. He was not sweaty or nauseous, and his blood work, EKG and chest X-ray were normal. He was distinctly tender over the part of his rib cage where bone and cartilage join each other a few inches from his breastbone. He had indeed done some heavy work with his arms in the days before, so the doctor made the assessment that his pain was caused by this apparent costochondritis.

Ed received a shot of pain medication at the hospital and was sent home with a prescription for hydrocodone. As the weekend went by, he started to feel worse and worse.

When I saw him Monday morning, he looked pale. He was short of breath and lightheaded. He had no appetite, and he had been sweating with the slightest exertion.

His blood pressure was low, even for him, a tall, sinewy vegetarian, and his pulse was 115. He did not have a fever, and his oxygen saturation was normal. On exam, there was no heart murmur and his lungs were clear, but his breath sounds seemed a little weaker on the left. His abdomen was diffusely tender, and he was still quite tender over each rib in the upper part of his left rib cage.

His EKG had some very nonspecific changes, which could conceivably go along with impaired blood flow to his left ventricle. Putting all this together, I recommended that we send him back to the hospital for reevaluation. I wondered about angina, a blood clot in his lungs or internal bleeding in his abdomen. His chest wall strain was clearly not the only thing going on.

At the hospital, they did another chest X-ray, which showed some minimal haziness in the left lung. His cardiac enzymes were normal, but he had an elevated D-dimer, so there was a possibility that he had a blood clot in his lung.

His CT angiogram ruled out a clot, but he had a dense infiltrate, by all indications a pneumonia, in his left upper lung, exactly underneath his sore ribs.

When the first chest X-ray was re-read with the second one and the CT as comparisons, the pneumonia was faintly visible.

We all tend to look for one diagnosis that explains everything that is going on with the patient, and we often tend to latch on to the first positive finding we make. But medicine is often more complicated than that, and sometimes we see diseases in early stages, when findings are too subtle to make a diagnosis.

I have come to feel a certain discomfort deep in my gut when an older patient has pain in or even near the chest that appears to have an orthopedic cause.

That feeling dates back to my first job, just out of residency, when an 80 year old woman with shoulder pain I had evaluated came back to the emergency room two hours later with an obvious myocardial infarction on her EKG.

Being the first one to evaluate a patient, you don’t have the advantage of elapsed time that the second examiner has. Such is primary and emergency care.

An Outsider’s View of Cardiology

When I started my first internship, back in Sweden in 1979, I worked under a fifty-something cardiologist who spoke slowly with a southern drawl – yes, there is a southern drawl there, too, slightly reminiscent of Danish, spoken not far from where my supervisor grew up.

He epitomized the the old school of cardiology, before it became a procedural specialty. He diagnosed heart murmurs by auscultation with his stethoscope, and he even claimed he could hear faint cardiac rubs or pulmonary râles in patients who were having a heart attack. He seemed to share the temperament of neurologists – slow and methodical master diagnosticians with, very much then and to a degree also today, limited or no treatment for a substantial portion of the diseases they diagnose.

In 1979, color Doppler echocardiography was not yet invented, and coronary angiography was not available where I worked. Cardiology was a purely cognitive specialty. The most important condition cardiologists treated, angina pectoris, was diagnosed on the basis of history, physical exam and at most a stress EKG.

Over just two decades, cardiology became a procedural specialty, and the diagnosis and management of angina became high tech with nuclear imaging, coronary angiography, cardiac stenting and bypass surgery. The view of angina became focused on stentable, “critical” lesions.

But people still died from heart attacks, even with only minor blockages on angiography and normal nuclear stress tests. And patients with classic angina symptoms were told they had non-cardiac chest pain if their stress EKG was abnormal but their nuclear scan was normal, or if the EKG and scan were abnormal, but the angiogram showed no critical stenosis. For over 100 years, the term “pseudoangina” was used to characterize this syndrome.

Every few years I would ask whichever consulting cardiologist seemed the most approachable, and every time I would get essentially the same answer: Angiogram trumps MIBI, MIBI trumps EKG, EKG trumps clinical history, kind of like the old rock-paper-scissors game.

Ironically, in 1973, the year before I started medical school, Harvey Kemp coined the term “Cardiac Syndrome X” for effort angina with normal coronary arteries. We now have some understanding of the mechanisms behind this condition, and this has led to some techniques for proving and studying it, but the diagnosis is largely clinical. We essentially don’t do coronary angiography with injection of adenosine or acetylcholine, measurements of coronary flow reserve, single photon emission computed tomography, positron emission testing or stress cardiac magnetic resonance imaging, at least not at Cityside Hospital. One thing we have learned is that this condition does progress relentlessly in 20-30% of cases and causes heart attacks and death in some patients, even though this was initially thought to be very rare.

The most dramatic development in cardiology in the last twenty years is probably our understanding that rupture of non-critical cholesterol plaque, small enough to go undetected during routine EKG or nuclear stress testing, accounts for somewhere around 85% of all heart attacks.

So much for all the angiograms, elective stents and bypasses cardiologists have been doing. In acute coronary syndrome, which is unstable angina or a heart attack without classic EKG changes of a completed heart attack, there is still an important role for urgent cardiac catheterization, but its role in stable angina or asymptomatic coronary stenosis is debatable at best.

So, now cardiologists are having to reconcile that their angiograms are a most imperfect predictor of disability and death, their stents don’t save lives except in acute coronary syndrome, and more and more of their patients will be plodding along with medical management of coronary disease that doesn’t show up on angiograms. They may find themselves tinkering with medical management of an incompletely understood syndrome, choosing drugs and dosages based on -gasp- patients’ subjective histories and clinical experience.

The pendulum is swinging back; a circle seems to be completed. Will cardiologists become slow and methodical internists again?

Cave: The Patient Who Suggests a Diagnosis Before Telling You His Symptoms

Sir William Osler wasn’t exactly wrong when he said “Listen to your patient, he is telling you the diagnosis”, but he didn’t mean it literally. His patients did not offer up esoteric and complete medical diagnoses on a silver platter. They left him clues in plain language that he listened carefully to in order to make the correct diagnosis.

His words were penned in an era when medical information was scarce among non-medical people. There was no Dr. Google, Dr. Oz or Dr. House to educate the public about diseases or medical terminology a century ago.

In a way, I think doctors today have to do more filtering of what our patients say in order to get the medical history straight.

For example, Mrs. LaVerdiere made an appointment for nausea some time ago. As soon as I walked into the exam room, she started telling me about how she must have eaten a spoiled crabmeat sandwich on her trip to a coastal fishing village the weekend before. Her conversation was full of theories as to why she was feeling unwell and her husband wasn’t. I finally got her to describe in great detail exactly what she felt, and the gnawing pain that radiated to her back did not fit with a simple case of food poisoning. Her CT scan showed the smallest pancreatic cancer ever diagnosed at Cityside Hospital and she underwent a Whipple procedure as easily as any routine minor surgery.

Mrs. Waller describes ordinary bodily sensations in the most dramatic terms and throws terminology around that rocks me out of my country doctor habitual way of plain-talking. She has, over the years, described ordinary itches as “you know how it feels when you’ve been bitten by a thousand fire ants”, headaches as “I felt like I was about to pop a Berry aneurysm”, and indigestion as “pyloric stricture”. I have the distinct impression she is always trying to make my job easier by describing things in more or less medical terms, in case I forgot to speak English.

During my tenure in medicine, the tendency for patients to offer explanations and theories instead of just describing what they feel has increased dramatically since the creation of the Internet. But I have also come to realize that there have always been people who are simply not able to recognize and describe what they are feeling, particularly emotions. They therefore tend to describe the bodily sensations that their unrecognized emotions produce, or, even harder to decipher, they are only capable of reporting other people’s observations of their own appearance or behavior.

Most of us recognize that anxiety or other strong emotions can cause heart palpitations or abdominal pain, hence our use of expressions like ”gut-wrenching”, but some of us are only aware of the bodily sensation and are clueless about their own emotions that trigger them. They are also usually skeptical about any suggestion of such a connection.

Hedda Brown is one of those people I have always struggled to diagnose, no matter what ailed her. Only a few years ago did I learn the word for her condition – alexithymia, inability to recognize emotions. She would answer questions like “tell me more about in what way you don’t feel well” with stories like this:

“I knew I wasn’t feeling right yesterday morning. I didn’t want breakfast. Harry, my husband, took one look at me and said I looked peaked and told me I looked like I was about to vomit. My daughter also noticed something about me. She said I looked like I was dehydrated. She acted real nice all of a sudden, instead of her usual way of ignoring me, she offered to make me a cup of tea or make me an omelet, but I just didn’t want any.”

No matter how much time I give Hedda to tell her story, I get very little to work on. So I usually try some direct questions, like “did you have chills” or “did your belly hurt”, but even that kind of inquiry usually results in answers about other people’s observations or theories.

I have finally come to realize that Hedda carries with her more than a lifetime’s worth of grief, which now and then erupts as a sensation she has no words for. Because she is so unaware of her emotions, the most I could ever expect from her is a general bodily sensation, like “a pain here” or “not hungry”. In the beginning, she underwent a fair number of tests, but as she has started to trust me more, we have had a few conversations along the lines of “maybe your body is trying to tell you something”. It is a slow process.

Thinking about Sir William’s famous quote, perhaps it could be adapted for the Internet age this way:

“Listen to your patient’s story; he is telling you the diagnosis.”

Specialists in Diagnostics

Every primary care physician has had this experience: We refer a patient to a cardiologist, pulmonologist or gastroenterologist and get a note back that says our patient’s symptoms are not cardiac, pulmonary or GI related – “Not my department”, in essence.

Medical specialties are organized by organ or organ system, and not by symptom. This really leaves primary care doctors in the default role of being specialists in diagnostics. I often say to patients with poorly localized symptoms: “Once we know what body part is causing your symptoms, we can get help from a specialist in that organ system, but until then, it’s up to you and me to figure it out”.

Some years ago I took too long to properly diagnose an older woman’s shortness of breath. It had developed gradually over a period of about a year. She had a smoking history and a mild chronic cough. She was also a diabetic with high blood pressure. I ordered a chest X-ray, pulmonary function tests and an echocardiogram before I realized I hadn’t checked her blood count. She turned out to have iron deficiency anemia from a chronic gastritis. That is a lesson I will never forget.

In the fifteen minutes we have with each patient, we sometimes zero in too quickly on the most obvious symptoms in front of us. This is perhaps even more likely if our support staff documents the medical history in the electronic medical record before we even enter the room. I constantly remind myself to take the time to listen carefully to the patient’s own story, and to simply observe before I begin examining.

A few weeks ago I saw a woman in her forties with a history of mild asthma and stable depression. She showed up as a “triage” at the front desk and was hoisted into our “trauma room”, gasping for air. She had been to a walk-in clinic a few days before and was prescribed an antibiotic for a bronchitis but had become progressively more short of breath since then.

“I don’t know if I’m having a panic attack or what”, she said between deep, rapid breaths. “My hands are getting all tingly and I have this constant pressure in my chest.”

Her oxygen saturation was normal and her peak flow was better than the old values we had in her record. Her lungs were perfectly clear. Her heart rate was in the 120’s and her EKG was normal.

Working quickly and speaking slowly, trying to get her to relax, I checked her legs for swelling and calf tenderness and checked her skin temperature. Her hands were ice cold and very pale.

“Yes, you are hyperventilating”, I said. “That’s why your hands are tingling. I’ll cut you a deal. Let’s give you some oxygen, so you’ll be able to breathe a little slower.”

She felt better and her respiratory rate settled down. With the pressure in her chest, she needed to be transported to the hospital for further testing to rule out a heart attack or a pulmonary embolus.

I finished up my note and handed it to the ambulance attendants. I remember typing in “distal pallor” as one of my exam findings. In the back of my mind I wondered if this was another case of severe anemia presenting with shortness of breath. At the walk-in clinic she might just have been pigeon-holed as having a chest infection, because it seemed the easiest diagnosis.

A call from the hospital the next day shed light on her symptoms: She had normal troponins and a negative D-dimer, but she was indeed profoundly anemic with a hemoglobin of 6, half of what would be normal for her, and her periods had been irregular and unusually heavy for the last year. She had also been taking a lot of ibuprofen, but her gastroscopy showed only some mild gastritis. So the cause for her shortness of breath, ultimately, was gynecological – not the first thing we usually think of with that symptom, although any kind of anemia should be in the differential diagnosis.

A simple bedside observation had suggested she might be anemic.

We do need to manage many common chronic diseases in our role as primary care providers, and this is something that is becoming more and more complex with time. But our role as frontline diagnosticians is possibly under-appreciated and under-emphasized. We need to continually hone our diagnostic skills in order to serve our patients. Even in cases where we refer patients out, to the Emergency Room or to specialists, we need to actively consider the diagnostic process beyond where our involvement or responsibility ends, so that we can become better and better diagnosticians ourselves.

We have all kinds of tools these days for looking up treatments for even the most esoteric diseases, and once we have a general idea of the diagnosis, we can easily look up the specific criteria. The challenge is to make that initial broad assessment that points toward the ultimate, specific diagnosis. That is a skill not easily taught in medical school, because it involves gauging multiple probabilities simultaneously and sifting through countless extraneous details in patients’ medical histories, lab tests and exam findings. Only hands-on experience teaches us to do that, but only if we cultivate an inquisitive mindset and a personal investment in the diagnostic process.

In all the quality literature I read, little mention is made of the value of accurate diagnosis; are we focusing too much on simple housekeeping parameters, measuring only what is easy to measure? Looking at malpractice statistics, failures and delays in diagnosis make up the majority of claims in primary care. That would suggest that what patients value and expect most is to be correctly diagnosed. Perhaps we need to redefine quality in health care to begin with accurate diagnosis of what our patients present to us with, before getting too far into the metrics of blood sugars, blood pressures, prescribing ACE inhibitors, aspirin and beta blockers.

An Invitation

“I invite you to follow me on my journey”, she said with a voice that sounded proud, calm and courageous.

Her brain MRI had shown a large, inoperable glioblastoma. Her cheeks were already puffy from the steroids the neurosurgeon had prescribed to counteract brain swelling and seizure risk.

“I am not afraid of my cancer”, she continued. “It is now part of who I am. I even gave him a name, and he follows me wherever I go. There is no point in wishing it wasn’t so.” She chuckled a little and added, “I talk to him sometimes, and say things like ’so, what are we going to do today?’ I can tell he is there when my right hand refuses to cooperate and I am unable to dial on my cordless phone, and when I feel spasms coming on that make me drop my teacup or whatever I am holding in my hand.”

She spoke with a grace and a dignity that made me feel privileged to be in her presence. I have followed, intimately, the course of many incurable diseases in dozens of patients over the last thirty years, and a handful of these patients have etched themselves into my memory with their serenity and otherworldly radiance of faith and purpose. This was the first time a patient spoke of her disease as a journey, and used the words “I invite you to follow me”.

I felt I was on such a journey when I travelled back to Sweden and shared my father’s last days and death from Alzheimer’s disease a few years ago. But there was something very unusual and humbling to hear a patient with a new terminal diagnosis open her private world to let me, a stranger and only her new doctor, inside.

I sometimes spend too much time and energy, or “jing” as my wife says, thinking, talking and writing about how health care should be organized and delivered. But then, every once in a while, a few words, a look, a sigh or an outstretched hand from a fellow human being cuts through all the distractions of my work and reminds me of my own purpose, my own journey as a physician, a fortunate apostle of the ancient masters.

I started medical school forty-two years ago this month. I am grateful to begin another new year in medicine.

A Straight Face Test for Health Care: Would Patients Pay for This?

Health care in America is fracturing right down the middle, and doctors are going to have to figure out if or how long they can straddle the divide between what patients want and what the Government and Corporate America want them to have.

Up until this point, the momentum has been with the payers, Medicare and the insurance industry. But the more heavy-handed they become, the more inevitable the public backlash is becoming.

It will come down to this, a kind of “straight face test” for health care: Would patients pay for this?

The Annual Wellness visit, better named “Medicare’s Non-Physical” and some forms of “Population Management” are examples. Both are great ideas; an annual health review and planning session as well as doctors maintaining an overview of, and reaching out to, high risk groups of patients – in theory neither would be anything to argue with.

But the way it has to be done today, if we want to get paid, micromanaged from afar through bureaucratic edicts, is alienating the patients this was all intended to benefit.

Totalitarian Health Care is Doomed

I grew up and went to medical school in a socialist country. I admit Sweden had a kinder, gentler, soft-core socialism, but I also visited and followed the news about the Soviet Union, the Baltic states, East Germany and the former Czechoslovakia.

American health care, as manifested by Medicare and the big insurance companies, is more and more starting to look like my visit to the Soviet Union with my surgery class in 1977. The most striking example of disregard of individual customer preference I saw was at a very large restaurant near the Red Square. The sour-faced, haggard breakfast waitstaff told our group bluntly that we could all have either coffee or tea, but they could not accommodate individual orders for different beverages.

The “planned economy” of the Soviet Union collapsed, and I suspect its counterpart in American health care eventually will, too. I think our system will split in two: One system for what patients see value in, and would pay for, and another system, which the politicians want them to have, but which most people would have nothing to do with if they had any say in where their healthcare dollars go.

Two dichotomies are driving this inevitable split down the middle of our healthcare system: First, the improbable marriage of public health and medical care; and, second, the opposing ideals of standardization and individualization.

Public Health vs Medical Care

It is insanely inefficient to mandate that highly trained physicians, with an “opportunity cost” of $7-10 per minute in primary care, and multiples of that in many procedural specialties, carry forth the nation’s public health agenda with their patients one by one during their office visits. Medicare’s requirement that we document an intervention for every patient we see with a Body Mass Index over 30 is a glaring example of that. Having our nurses or other staff members do that isn’t much better. Our teams have a lot of tasks and routines to maintain proficiency in, and since obesity affects a large proportion of our society, it would be better addressed on a national, cultural and political level. It suddenly became our job, it seems, as health care professionals, because whoever had the ball before us failed at fixing the problem. But soft drinks and breakfast cereals are made by big, powerful corporations, and our Government lacks the guts to reign them in. So, someone thought, let the docs spin their wheels for a while; they don’t have enough to do.

A healthcare system designed for setting fractures, treating pneumonias and removing appendixes is ill suited for treating societal ills. Quite frankly, it doesn’t pass the straight face test: Ask citizens if they want their health insurance premiums (or out-of pocket costs in a Direct Primary Care model) to cover à la carte anti-obesity campaigns or if that should be included in State and Federal budgets. I know what the answer will be.

The difference here isn’t subtle: If public health is financed through workers’ insurance premiums, its cost is more evenly spread, and thus affects middle and lower income people more than if it comes out of corporate (think Pepsi, Coke, General Mills and Ocean Spray) and progressive personal income taxes.

Standardization vs Individualization

There is a rapidly growing interest in personalized health care in America today among patients and health care entrepreneurs. Genetic profiling is now used in choosing which medications to prescribe, for example.

At the same time, payers are tying reimbursement to doctors’ adherence to blanket recommendations (read “Evidence Based” treatments) derived from large population studies that were designed to find lowest common denominators: In general, for example, low dose aspirin, beta blockers, lower blood pressures and blood sugars are helpful, but we are now seeing that there are more and more subgroups of patients who don’t have the expected benefits from any given “Evidence Based” intervention. In some cases, people are harmed by them. As long as Medicare and the insurance companies hold the purse strings – actually, dole our own money back to us according to their standards – the welfare of a few is routinely sacrificed for the benefit of the many.

Again, applying the straight face test, patients wouldn’t want to pay us for delivering care to them that was designed or chosen to help someone else, just so we could show off high compliance rates. If doctors are held in too tight a grip of uniformity by the conventional insurers, patients in this new era of deepened insight into the variation of disease expression will take their money to providers and insurers who will respect their preferences.

A Moral Compass

The straight face test has to be our moral compass as we work our way through our daily allotment of twenty-odd patient encounters with fifteen minutes to spend as wisely as humanly possible.

People can vote their politicians out of office, they can form cost sharing cooperatives or sign up for Direct Primary Care. But we, physicians, need to make sure we don’t forget who ultimately are our customers. Even without politicians and insurance conglomerates there will always be doctors and patients. May we never lose our trust in each other.

The Interview

Today I met a man who wanted to interview me before transferring his records.

He was about my age and seemed polite and pleasant enough. He told me his doctor of a dozen years had started to taper him off his long term narcotics after he reported some of them missing because of theft. He used to take the equivalent of about 1,200 mg of morphine per day for his back pain. Our office classifies anything over 120 mg of morphine as a high risk dose.

He left that practice and transferred his care to a hospital run clinic across his home town. His next doctor at first prescribed him the medications, and then quickly begun tapering him off them. The story was a little vague as to exactly why.

He then landed in the hospital for something unrelated, and the report from that admission was available on our state’s medical information sharing website. He told the hospitalist that he was on the high dose that actually two doctors had already tapered him off. The hospital doctor called his new primary care doctor to clarify things and was told the patient had failed a urine drug test because it contained a pain killer he was supposed to have run out of months before. He told me he wasn’t trying to deceive the hospital, he just thought they wanted to know what he used to be on before things changed. He also told me he had kept a few of the discontinued pills on hand, and had used them when his main medicine was being tapered.

The man said he had been off his narcotic pain killers for a few weeks now. He drove himself the 25 miles to our clinic, and he walked the long way from the parking lot to my corner office. He sat in a relaxed position in the office chair across from me, but he told me that he had suffered a big loss of quality of life when he lost access to his narcotic prescription.

After he was done telling me about what it felt like to be tapered off his pain medications, and as a by-the-way, he also told me he needed to get back on the amphetamine he had been on for his attention deficit disorder.

I listened carefully and told him with my most gravelly and serious voice that I didn’t think any doctor would prescribe the kinds of doses he used to be on, and that he did seem to function without them – at least to a degree. I told him that his best bet was probably to talk with the doctor he had known for twelve years. I told him that particular practice has a committee that reviews the care of their difficult pain patients, and he could ask for their involvement. I offered to take care of his other medical needs if he wanted me to, but that there was not enough trust between us for me to just give him narcotics again because of the history he provided me with.

He thanked me politely, rose from his chair, offered a firm goodbye handshake and walked slowly down the hall back to the reception area.

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