Archive Page 163

Wrestling the Rooster

“I used to be strong, I wrestled the bull”, Sumner Ball said, “but now I can’t even wrestle the rooster”.

On the far side of eighty years old, he looked lively and trim, and his weathered face hinted at a smile as his blue eyes peered straight into mine.

“I think these cholesterol pills are hurting my muscles”, he declared. “I don’t think they’re good for me”.

“Is it your back?”

I scanned through his last few visits and saw he had mentioned some low back pain while gardening this summer.

“No, Dr. Tom took care of my back”, Sumner said, referring to our local chiropractor. “My arms and my legs hurt, even my shoulders hurt.”

Years ago, Sumner had developed polymyalgia rheumatica, and it took almost two years to get him through it with the help of gradually decreasing steroid doses.

“Let me get a blood test, and why don’t you stop the cholesterol pills for a while and see how you feel”, I offered. We agreed to have a follow-up visit in a few weeks.

Three weeks later, Sumner Ball was a changed man. His faint smile was now a big grin.

“I knew that medicine was not good for me. I feel better now, not so many muscle aches. And I stopped the other one too. It was making me dizzy.”

“What about the blood thinner?” I asked.

“No, that one I take. I know it can keep me from having a stroke. But I know my body, and I know what my body needs, just like when I had goats and horses – they knew what to eat and not to eat.”

“My goats don’t always know the difference”, I said. Sumner grinned as he continued, “and we didn’t have the vet come out all the time. We treated them with herbs, good feed and common sense.”

His blood pressure was still OK, but his pulse rate was just under 100, a little high for someone with atrial fibrillation.

“Your diltiazem was keeping your heart from going too fast”, I reminded him.

“I feel good now. I like to stay this way. Do you think I am making a mistake?” His penetrating, small blue eyes told me he didn’t want me to disagree with him.

“Your heart could start racing”, I warned him. “Let me see you in a few weeks to make sure you’re not going into heart failure.”

Two weeks later, Sumner had gained five pounds. His legs were swollen, he was short winded and his irregular pulse was 130.

“Your heart is missing the diltiazem”, I said.

“I can’t take it”, Sumner answered. I knew he had already tried a beta blocker a few years ago, and his pulse had dropped to 40 on the lowest dose.

“How about trying something natural?”

His eyebrows rose. I continued: “There is an old herbal remedy, made from foxglove, called digitalis. It may slow your heart down enough to get you out of trouble.”

A week later, Sumner looked like he’d take on something much bigger than the rooster again. His pulse was 80 and his weight was back to its baseline. Leaning back in his chair, he said:

“The third day I took your medicine, I could feel my heart slow down. I knew that herb medicine would be good. You do all right by me.”

“I figured something more natural might work for you”, I answered. “Besides, it was the only other thing I could think of.”

“I like you. You have common sense”, he said as he offered me his large hand.

It was the firm handshake of a man who had worked hard all his life.

From Scribbles to Scribes: Newspeak and Foma in the Medical Record

“In George Orwell’s Nineteen Eighty-Four, the fictional language Newspeak attempts to eliminate personal thought by restricting the expressiveness of the English language.”
Wikipedia

In my youth, I read George Orwell and Kurt Vonnegut, Jr. I remember thinking that “1984” seemed very far into the future – I would be over 30 then!

Well, 1984 came quickly; it was the year I started practicing medicine. I did a lot of thinking about language around that time. I was refining my use of English, my second language, and working on striking a balance between medical jargon and newly learned Maine colloquialisms.

In my residency, our progress notes were transcribed and cosigned by our faculty, but things were different among practicing physicians. Medical records at that time were handwritten in most offices I had contact with. Our notes were brief and to the point with word choices and symbols that conveyed nuances that made sense mostly to the writer and other medical colleagues. Few outsiders ever read our office notes. Specialists usually had their consultation notes transcribed, and there was often a richness and literary grace in their language. Here also, the notes often contained a metatext of subtle meaning that illustrated impressions and opinions without seeming blunt or offensive to uninitiated readers.

Our notes were our working tools for documenting our observations and our thinking. In my practice we often wrote down contingency plans and differential diagnoses for our benefit and our covering partners’, like “consider X” or “switch to Y if ineffective”.

We rarely elaborated the obvious. I remember my awe at the brevity of Rick and Dave, two pediatricians at the hospital where I trained. Many of their office notes simply read: “LOM. Amox” (Left Otitis Media. Amoxicillin). It made sense; what else was needed? The dose followed the child’s weight, and most ear infections were straightforward medical problems. No wonder they could see more than forty patients per day without getting bogged down.

Over the years, office notes became interesting to “outsiders” who had claimed a central spot in the doctor-patient encounter: insurance companies sought to control cost and quality, and we had to start writing our notes so that lay people would find them useful.

Writing mostly for non-physicians meant stating the obvious, so chart notes became much longer. This forced physicians to start using transcriptionists, as typing your own notes seemed a waste of time to most of us.

Now, with electronic medical records, we are finally doing our own typing. However, in order for the EMR to be really useful to the organizations we work for and for the government and insurance companies, we are discouraged from free texting our own words. Instead, we are choosing standardized, built-in words from click boxes or drop down menus. The industry jargon for this is “discrete data entry”. It is more quantifiable than allowing doctors to choose their own words or quote colorful descriptions by patients, but like George Orwell’s Newspeak, it reduces human experience and expression to a color-by-numbers exercise.

Even with the power of today’s EMR’s, click boxes, drop down menus and text macros, many busy physicians find the documentation process too cumbersome. Transcriptionists don’t seem to be the solution for most, because each EMR is different and entering the “discrete data” differently in each product isn’t the same skill set as speed typing and knowing how to spell medical words.

Enter scribes, the latest category of support staff in the medical office; a non-provider (now, there’s some Newspeak, as Orwell would have said) who listens in on the conversation between doctor and patient and documents it in the EMR by choosing the right preloaded words in order to translate the visit into computerspeak.

I read rave reviews about scribes, but shudder at the thought of having one more layer of possible distortion between what is said and what is documented. The patient says one thing, the scribe chooses the closest thing from the computer menu, and the doctor or a colleague, insurance reviewer or malpractice attorney later reads the non-medical person’s chosen word and concludes something totally different from what the patient and doctor had understood in the visit.

The whole concept reminds me of the parlor game “whisper down the line”, where people get to laugh at the change in meaning a message can go through as it is relayed from one person to another and another.

Kurt Vonnegut Jr’s spirit, like Orwell’s, thrives in today’s medical records, whether typed, clicked or still transcribed.

Not only did the increased readership of medical records among non medical “stakeholders” (more Newspeak) lead to documentation of what used to be obvious and understood by and between physicians. It also made room for what Vonnegut called “foma”, harmless untruths; lies that, if used correctly, can be useful (quoted from Wikipedia).

Medical records routinely contain the acronym “PERRLA”, which stands for “pupils equal, round, reactive to light and accommodation”. Yet almost no doctor actually tests whether the pupils change size when the patient focuses on a close object. The acronym is just too handy to resist, as it implies a thorough exam of the pupils was done with almost no effort in documentation.

Another white lie is “cranial nerves normal”, as only neurologists seem to carry a vial of ground coffee for testing patients’ sense of smell. The rest of us at most only check cranial nerves II through XII.

EMR’s make it irresistible to pump up chart notes with foma; one simple click can elegantly declare that a patient was counseled on this, that or he other.

The sad result of the proliferation of Newspeak and foma in modern medical records is that it is harder to find the salient points of medical history, exam, assessment and plan. Maybe the back-end users, those who pull statistical reports of how many heart attack victims have crushing versus squeezing chest pain are having an easier time, but busy doctors reading each others’ notes often secretly reminisce about the days when medical records only said “LOM. Amox.”

Good, Strong Heart Beat – 140 and Regular

“Welcome back. How was your trip? Or exile… you were away for a long time.”

“Almost a year”, my nine o’clock patient answered. A woman just over forty, she looked tan and physically strong. Her short hair was peppered with gray, different from the last time I saw her. She had gone abroad on assignment for a magazine and a film production company, and before she left, she had joked that she would have to be her own doctor until she could come back to see me again.

“So, what’s going on”, I asked.

“I’m pregnant, pretty far along. I thought it was early menopause, like my mother and my sister, but that doesn’t come with morning sickness. And I can feel my uterus.”

“And you haven’t seen a doctor?”

While getting ready on my exam table, she told me about her work in small villages far away from clinics or hospitals and her decision not to seek care until she came back home.

Her uterus almost reached her navel. I took out the hand held vascular doppler we use to measure blood pressures at the calf of people with circulation problems. I changed the probe to the one used for fetal heart tones, an attachment I had never used; I stopped doing obstetrics the day I graduated from my residency thirty years ago.

“I never thought I would be pregnant again after my miscarriage when I was twenty-five”, she said with sadness in her voice as I applied gel to her abdomen and turned on the device.

There was the loud, swoshing sound of the placenta following her own elevated pulse rate. I pressed deeper and aimed the instrument downward with all kinds of static from the movement against her skin. Then, suddenly, there it was, rapid and perfectly regular; a sound I hadn’t heard for thirty years.

“Is that the baby?”

“Sure is.” I counted. “Good, strong heart beat, 140 and regular”.

She reached down and grabbed my hand.

“Please leave it there. I want to listen to it longer.”

Her eyes moistened and her lips began to quiver. She placed her top teeth on her lower lip as if to keep it still. I rested the probe and we both listened in silence.

I remembered that sound, the rapid heartbeat of unborn babies, from many long nights on duty during the sleep deprived years of residency. I remembered catching a few moments’ rest in the on-call room down the hall from two or three monitors with intertwining rhythms of babies waiting to be delivered.

Vividly, I remembered my first delivery, a precipitous double footling breech with no other doctor on the ward than this frightened first-year resident. Just in time, as I stood there with my right hand assessing the situation, old Doc Walker appeared in his street clothes in the delivery room door.

“What’ya got, son? Nurses tell me you got two feet there.”

“Yessir,” I tried not to quiver.

Doc Walker’s slow and gentle words calmed the young mother and guided my hands as they in turn guided the baby, feet first, across the symphysis and onto his mother’s belly.

As the doppler continued to tap out its rhythm, I remembered faces with smiles and tears, happy couples and frightened, single young mothers in the delivery rooms. I remembered blue babies, me slipping in umbilical catheters, the neonatal intensivists watching and supervising.

I remembered my own son, hooked up to an apnea monitor at my own hospital. Years later, as a new grandparent, I was a visitor, strangely out of place in a different neonatal intensive care unit, watching my granddaughter through the walls of an incubator.

Thirty years since I heard that kind of heart sound, and it still touched me in inexplicable ways. I remembered, my whole body remembered, the mixed feeling of dread and excitement when my pager used to go off in the middle of the night: “Call 2350 STAT.”

Thirty years ago, I saw more births than deaths. Now I only attend departures. For a minute or two that morning I was again participating, ever so briefly, in the greatest miracle a physician is privileged to be part of.

Children Who Never Grew

I have two patients with phenylketonuria. Both are about my age. Laura, a non-verbal, slender woman with weathered features but the mind of a very young child, lives in the community. Her sister, Regina, has lived all her life in a nursing home. She doesn’t have a wrinkle in her face, and seems mostly unaware of her surroundings.

The two girls were born several years before Dr. Robert Guthrie developed the blood test for phenylketonuria, and a decade before routine PKU screening was introduced in this country. I often wonder what the parents of these two girls knew about their condition, where they went for a diagnosis, and if they even got one while Laura and Regina were still young. In many cases back then, PKU went undiagnosed as the specific cause of mental retardation.

Pulitzer and Nobel Prize winning author Pearl S. Buck gave birth to a daughter, Carol, in 1921. Carol did not develop normally, and on the advice of her Chinese doctors, Pearl Buck traveled to the Mayo Clinic to have her evaluated. She left the clinic and the United States without a diagnosis, except “I don’t know. Somewhere along the way, before birth or after, growth stopped”.

Pearl Buck cared for Carol at home until age nine. At that point she returned to America. She wrote “The Good Earth”, her book about her experiences in China, in 1931 with the hope of making enough money to support her daughter, who was institutionalized around that time. In 1950, she wrote “The Child Who Never Grew”, a memoir about her daughter. It wasn’t until ten years later that the cause of Carol’s mental retardation was finally diagnosed as phenylketonuria, the genetic disease that wasn’t even known until Carol was in her early teens.

The disease had first been described in Norway twenty years before Laura and Regina were born. Its discovery involved another set of siblings:

Dr. Asbjørn Følling, who had been a chemist before studying medicine, was asked to evaluate a brother and sister with severe mental retardation. His son, Ivar, told the story in a speech on the sixty year anniversary of this event in 1994:

“The stage is set in 1934. A mother with two severely mentally retarded children came to see my father, and to ask for his advice…She had also noticed that a peculiar smell always clung to her children…

The girl, 6.5 years old, could say a few words, was fond of music, had a spastic gait and a whimsy way of moving about, apparently at random. At times she had an enormous appetite, at other times none. The boy, almost 4 years old, could not speak or walk, eat or drink on his own. He was unable to fix his eyes on anything, and stool and urine habits were those of a baby.”

Dr. Følling’s son went on to describe his father’s painstaking chemical analyses of the children’s urine over the next several months that led to the realization that they both excreted phenylpyruvic acid, which healthy individuals don’t. The disease, phenylketonuria, is still called Følling’s disease in Norway.

The diet necessary for PKU patients was slowly established once Dr. Følling’s chemical analyses of urine hinted at their abnormal breakdown of the essential amino acid phenylalanine. An infant formula was developed in 1951. There are now protein supplements with low levels of phenylalanine, and also a pill that lowers phenylalanine levels, Kuvan (sapropterin), developed in the last decade.

Laura comes to see me every three to four months. I see her sister, Regina, every week during my nursing home rounds. When I see her, I always think about the life changing benefits of the newborn PKU test that came about in my own lifetime. Laura and Regina are part of the history of medicine, some of the last few with a cruel disease few doctors today have ever seen. I feel sad and humbled in the presence of these two contemporaries of mine, two children who never grew, but I also feel inspired by the steady progress of basic science.

One Visit, One Problem?

The other day I received my copy of the periodic newsletter of our neighboring Canadian medical society. It made me realize that both countries’ primary care doctors, in spite of our entirely different health care systems, are facing some of the same issues.

The bulletin warned Canadian doctors not to enforce a one-problem-per-visit policy, but to offer more comprehensive care to their patients.

The way doctors and clinics are paid in most settings here, two short visits are reimbursed at a much higher rate than one long and complex visit that takes up as much or more time. When patients feel the pinch of copays, travel costs and lost time at work for doctors’ appointments, tensions between the agendas of health care consumers and providers are inevitable.

It can be challenging enough to provide a healing atmosphere in a busy clinic. When doctors feel so much pressure that they become mercenary about their time, any hope of healing is lost.

I never understood the logic behind the one-problem-per-visit way of rationing health care. I do accept that the time we have to spend with our patients is finite, but there is usually some wiggle-room. I tend to be upfront with patients about how much time they were scheduled for. Some patients require extra time for even the seemingly most straightforward problem, but I have many patients who can bring up several problems and allow me to address them in a fifteen minute visit.

A patient with abdominal pain and joint stiffness may have an inflammatory bowel disease that explains the two seemingly unrelated symptoms.

A patient with pneumonia and a raging grief reaction needs both issues addressed in that visit, most likely with early follow-up for both problems.

A person with uncontrolled diabetes never has just high blood sugars; there is always a multifaceted story behind the numbers. That story often touches deep seated issues like self worth and depression.

Doctors in today’s health care machines, not just in our country, seem to think of themselves too often as widget makers, and not as healers. If we deliver only cookie-cutter health care, perhaps every aspect of our work is measurable and more of a commodity than a unique, personalized service. But, by reducing ourselves to generic providers of mass market care, we breed discontent among our patients and burnout within ourselves.

My wife often points out that when I hurry to do things around the house, I become less efficient and actually get less done than if I just plod along and do what needs to be done without fretting about it. In my work, I have just that ability. I am blessed to most of the time be able to enter the exam room with a mind free from the clutter of busy-ness and engage with my patients in an unhurried manner. Sometimes, when I am running late, I will enter the room and literally sigh before sitting down with an apology about running late because of a tight schedule. Patients invite me to relax, and I show them that all my attention is on them at that moment. Not being scattered allows me to accomplish more in a short time.

We need to always think of ourselves as “selling” our expertise and experience, not just our time. An appointment of any length can be effective or ineffective. A brief but well planned visit, where we enter the room prepared and where our documentation in the medical record doesn’t detract from the patient interaction, is more satisfying to the patient and the doctor, and gives some room for connecting with the person behind the symptom.

If we don’t fully master our EMR technology, we will be distracted and ineffective during the visit, and we could fail to document our clinical thinking well enough to be effective in follow-up visits.

I also think we as physicians need to always value the personal aspect of the work we do in order to be of any real help to our patients. If everything about our care is ever so correct, but bland and uninspired, we invite demands for more, as patients feel unsatisfied. If we spend our allotted fifteen minutes delivering exceptional care, our professional satisfaction will carry us further. Our patients will not feel cheated the way many do when we are too stressed to even recognize their needs, let alone begin to address them with skill and compassion.


I just realized none of the posts show on an iPad or a computer, but they do show on an iPhone. WordPress is working on this. In the meantime, please visit my Substack.

 

 

Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.

 

BOOKS BY HANS DUVEFELT, MD

CONDITIONS, Chapter 1: An Old, New Diagnosis

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