A Country Doctor Writes:

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“Fear is more pain than is the pain it fears.”

Sir Philip Sidney

“In our specialist age it has, in fact, become a major function of the general physician to examine thoroughly, to explain simply, to reassure as far as may be, and to protect his patients from unnecessary medical or surgical interventions.”

John A Ryle, MD, 1948 in The Journal of Mental Science, published by The Royal Medico-Psychological Association

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Re-reading my post about Morbus Propedeuticus, Medical Students’ Disease, I realized I had inadvertently used the word “gracefully” in my account of how my instructor examined my enlarged lymph nodes and reassured me that they were not suspicious. My intention had been to say “graciously”. For a moment I thought I should correct my slip-up, but then I realized that what Dr Bruun did wasn’t just gracious, but actually quite graceful. His whole demeanor conveyed sincerity, kindness and patience. He made me feel completely reassured and relieved of my fears.

Every day, I encounter fear of some degree in patients, often unfounded; it is not the patients with cancer or heart disease or poorly controlled diabetes that share their fear behind my closed exam room door, but the patients with ill-defined symptoms or no symptoms at all.

I have a few patients who always seem to be concerned about one bodily sensation or another, but then there are some that have only one disease they are worried about getting. This predicament is different from hypochondriasis. It goes by the name nosophobia, literally “fear of disease”.

Nosophobia can be triggered by learning about a disease affecting someone we know, by reading or watching accounts of dreadful diseases, or by receiving inadequate information or reassurance when we do seek medical evaluation of a symptom.

In our “information age” patients often look up their symptoms on the Internet, and come across endless possible explanations, or differential diagnoses. The problem with random searches is that the results also tend to be randomly arranged and not ranked according to the person’s specific presentation or risk factors, and not at all according to how common or rare each disease is.

When we as physicians evaluate patients with undiagnosed symptoms or concerns over a specific disease, our thoroughness, thoughtfulness and demeanor can feed or quell nosophobia.

John A. Ryle, MD, in his Maudsley Lecture, quoted at the beginning of this post, writes about physicians inadvertently causing nosophobia in their patients:

“Again and again patients discharged from hospital, when asked what the doctors have told them, say, “ Oh, they didn’t tell me anything”. Often they have spent long periods in the ward and been elaborately investigated, all the time waiting and wondering and uninformed. Could anything be more conducive to the initiation or aggravation of anxiety than experience of this kind? Probably the divided responsibilities…..in institutions and the inexperience of house-officers are partly to blame, but the mechanistic, objective character of modern investigations also tends to distract the doctor’s from the patients’ thought and to direct attention away from private sensibilities and present needs. I have even watched air-raid victims being admitted, examined, X-rayed and transfused without a word of comfort or reassurance being given to them by those concerned.”

Ryle’s lecture was published in an obscure journal dedicated to what we now call Mind-Body Medicine. Today, even large mainstream institutions like Harvard Medical School have entire Mind-Body Medicine departments. But before thinking we have come a long way since 1948, we should remember that Mind-Body Medicine isn’t something separate from everyday primary medicine; it is possibly the biggest part of primary care. That doesn’t mean every primary care physician needs to practice full-fledged psychiatry. It does, however, require us not to be mere body technicians, but real doctors; human, humane, humanistic.

Ryle puts it this way:

“As a profession we are losing, in the process of developing our technologies, something of the philosophy, humanism and courage of the older physicians.

Our loss of philosophy is shown in our inability to piece together the components of an illness or an individual, to assess the roles of mind and body in morbid experience and to balance the needs of both –  in brief, in our inability to see things “whole”. Our loss of humanism appears in our too partial success in assessing the psychological needs of the individual and the social needs of the community. Our loss of courage is chiefly manifest in our present-day unwillingness to make pronouncements without subjecting our patients to elaborate investigations. These, while often necessary and valuable, can also prolong anxiety, and leave our own doubts and questions still unanswered.

Without courage to accept clinical responsibilities we cannot impart courage to our patients. Without a reasoned clarity in diagnosis and a reasoned hopefulness in prognosis we cannot properly counter fear. In the majority of cases it is possible to give to patients a simple interpretation of symptoms; a simple idea as to how they should be regarded; a set of sound reasons should further inquiry become necessary; a provisional prognosis, in which the emphasis should be on the better chance whenever possible; and an intelligent plan of action. For the busy practitioner or hospital surgeon or physician, it may well be impossible to devote time and thought to the more profound psychiatric methods, but there should always be time to examine carefully, to explain clearly, and to reassure as fully as the circumstances allow.”

I think it is easy for us doctors of today to lose our courage with all the scrutiny and second-guessing we are subjected to. I also think it has become more difficult to find the time to “examine thoroughly” and “explain simply”, as Dr Ryle puts it, and to take a good history. But without those ingredients our reassurance carries no weight. Without them the health care squirrel wheel keeps turning faster and faster at ever greater cost as insecure and worried patients churn around and around.

Ryle’s call to protect our patients from “unnecessary medical or surgical interventions” is, of course, another way of saying “first, do no harm”. In our continuing efforts to never leave any stones unturned, tests undone or cautions undelivered, we are probably causing more harm, at least in the form of fear and anxiety, than we would ever like to admit.

It was spring. My medical school class, two years along in our five-and-a-half year endeavor, had earned the “medicinae kandidat” degree. We were now worthy of leaving the basic sciences and research center on the outskirts of town and starting our preparatory clinical, “propedeutic” semester at the University Hospital. In Sweden, at that time, we used a lot of Latin words and phrases. Crohn’s disease was  Morbus Crohn, chart notes listed physical exam findings by Latin names for the bodily organs: Cor for the heart, Pulm(ones) for the lungs, Hepar for the liver, etc.

Uppsala Academic Hospital was an imposing campus, with several tall, white towers, housing the most modern wards, laboratories and operating theaters. We were relegated to a pink stucco building that housed the old tuberculosis clinic.

The physical exam course was taught by a couple of older pulmonologists. At first they struck many of us as relics from a bygone era, but as the course went on, our respect grew. These unassuming physicians could percuss a patient’s chest wall and describe in detail what the x-ray would look like, they made us feel the tip of the spleen by turning the patient on his right side, they measured jugular venous pulsations and pedal pulses.

Sometimes we had real patients with remarkably abnormal findings to examine, but we often were charged with examining each other for assessment of normal physical exam findings.

My partner for the Lymphatic System module was Sven Björk, a slow-talking kid from the very north of Sweden. He had jet black, completely straight hair and a broad face with eyes set wide apart. He was part Same, the native, reindeer-herding nomadic population from north of the Arctic Circle.

Sven was a bright young man. He had memorized the anatomy quicker than I had, well ahead of the exercise. Yet he seemed nervous. I soon found out why: he had noticed several enlarged submandibular and anterior cervical glands on himself. We compared each other’s necks and jaw lines, but found to our surprise that our lymph nodes were about the same size.

My glands had been big as long as I could remember; I had gone through repeated strep infections. In second grade I missed 42 days in just one semester. Sven had never had strep throat, and he didn’t remember feeling any enlarged lymph nodes before, but he had never checked himself quite like this before.

Our instructor came over to see how we were doing. Sven cleared his throat and started telling Doctor Bruun what both Sven and I had noticed on his neck.

The fifty-something doctor put his hands on Sven’s neck. Methodically, he worked his way up, down and around the neck and down into the armpits. He had Sven lie down on the exam table, supine for the liver, on his right side for the spleen, then reached for the lymph nodes in Sven’s groin. His face was serious as he whisked Sven off to his office, leaving me standing, feeling my own cervical lymph nodes, bigger than Sven’s.

Sven was diagnosed with Hodgkin’s Disease, a type of lymphoma that wasn’t quite as easily cured then as it is now, but Sven responded well to the treatment and didn’t miss much school.

The rest of our class, me included, went through a prolonged case of what our instructors called Morbus Propedeuticus, Medical Student’s Disease. It is natural to worry that you might have some of the bad diseases you learn about in medical school. Seeing one of your classmates develop cancer sets the stage for more than the normal amount of hypochondriasis.

I realized that even though Sven’s and my lymph nodes were similar, his had developed quickly without reasonable explanation and mine had been there for years and had their origin in my recurrent episodes of tonsillitis. I did ask my instructor to check me over, which he gracefully did. He was not worried, and I accepted his assessment. I never again worried about having a dreadful disease, but I often thought of Sven and me during that physical exam class; there but for the grace of God go I.

Around the time of my birthday a couple of weeks ago, I suddenly thought of Sven again: I know he was declared cured from his Hodgkin’s, but what about freak recurrences, late cancer treatment effects or other tricks of the Grim Reaper?

Google gave me the answer: Sven is head internal medicine physician at a medium sized hospital. He has published several scientific articles, and was interviewed recently about differences in heart attack survival between northern and southern Sweden. I even found a couple of pictures. Wouldn’t you know it, he doesn’t have a gray hair on his head or wrinkle in his face; he looks younger than I do.

Bless you, Sven. I wonder if you know how often my thoughts have gone back to those weeks we spent together way back then.

Marc Lachance is the perfect consultant. Ten years my senior, he had more than mastered his specialty by the time I came to the area. He had also established himself as a mentor to Cityside Hospital’s residents and many young physicians who sent him referrals or called him for curbside consultations.

Marc used to live in a rambling farmhouse not far from where I live. But then his elderly father, widowed and suffering from macular degeneration, needed more help in order to stay in his own home. Marc moved to the opposite side of the city to be closer to his father. Marc’s wife was able to look after her father-in-law while Marc commuted to his office downtown. When his father passed away, Marc and Elaine stayed put, even though Marc’s commute was long.

Marc would follow some patients through the decades, but more often he would do a consultation and perhaps a follow-up. Then he would dictate a letter, right in front of the patient, to the referring physician with a detailed care plan. Marc welcomed follow-up calls from his colleagues and he insisted on getting continued updates on patients he had seen in consultation.

Unlike many specialists, he prided himself in his broad knowledge of medicine. I often ran into patients who had seen Marc for a consultation pertaining to his specialty, but had been diagnosed with cancer, hepatitis C and other conditions by Marc.

Whenever I called Marc for curbside advice, he told me exactly what I needed to know in order to move forward with my case. He never put me down if my call was disorganized and less than well prepared. But his own clarity of reasoning and exquisite mind for detail always made me feel I had been to school or a motivational seminar: “This is how a physician should be”, was the thought that lingered after getting off the phone with Marc.

Marc’s partner, whom I had fewer dealings with, retired a year ago. Many of us primary care physicians quietly wondered what was going to happen now.

Yesterday, a patient I shared with Marc brought in a letter she had just received. It was a printed letter that read:

“Dear Patient,

After more than 35 years, I will be closing my practice on December 30, 2013. For many years I have commuted a great distance to my office. As I am soon turning 70, and hoping to avoid retirement, I have made the decision to relocate my practice to Meadowview Hospital in Cornish, which is closer to my home. I will be an employee of Meadowview Hospital without the concerns of managing the business of a medical practice. By making this move, I am hoping to be able to practice medicine well into my eighties if I continue to enjoy the good health I have been blessed with.

I would be happy to continue seeing any patients who wish to transfer to my new location, but understand if most of you will want to find a specialist closer to where you are. Drs Jonathan Bard, Sheldon Mintz and Ravinder Pran all accept new patients in their Cityside Hospital Clinic.

I appreciate the confidence you have placed in me and wish you the best future health. Your primary care doctor has always received copies of my notes and your complete medical records are available for transfer by contacting my office at the above telephone number….”

I slowly handed the letter back to my patient.

Marc, I thought, you are teaching me something every time: How to be an up and coming young doctor, how to conduct yourself when you are in the prime of your career, and how to stay in the most fascinating job in the world as long as you possibly can. I know you love medicine, possibly even more than I do. I also know that you are at least ten years wiser than I am about being a human being, a son, husband and citizen of the world.

Bonne chance, mon ami, and may you never retire.

In 2009 I wrote a post titled “Quality or Conformity“, where I pointed out that many of the quality measures in primary care have more to do with whether doctors follow guidelines than if they deliver care that helps patients live long and well. There is a tendency to focus quality efforts on measuring what is easy to measure, rather than what matters the most.

That phenomenon is called the Streetlamp Effect, named after the man who was found searching for his car keys not in the dark alley where he lost them, but under the corner streetlight where he could see better.

Last night and tonight I read four articles in The New England Journal of Medicine and JAMA that made me think again about how elusive an ideal quality is in primary care.

The Case Record of the Massachusetts General Hospital for the week of May 23 was a 12-year-old girl with celiac disease, behavioral symptoms and fatigue. Her final diagnosis was Addison’s disease, a deficiency of the body’s natural steroids. The piece mentioned that most sufferers of this condition live with its often-debilitating symptoms for 2-5 years before diagnosis. The girl in this article had been hospitalized several times before the correct diagnosis was made (at MGH, of course!).

The other piece in The New England Journal was about how Fee-For-Service payment was going to go away and be replaced by payment schemes based on relative value units and adherence to clinical guidelines for chronic disease. This piece specifically mentioned that treatment of (acute) illness would have far less value than managing chronic diseases.

I thought of the man who had been to the emergency room twice before I diagnosed him with scabies a few months ago. Doesn’t accurate diagnosis with new presenting symptoms count for anything anymore?

The first article in JAMA was a very broadly written piece about the future of quality measurements under Obamacare. The second article, written by a group of primary care doctors, was titled “A View From the Safety Net”. These doctors described the difficult choices they had to make between doing what mattered most to their underserved minority population or scoring better on quality measures dictated by outside authorities when they didn’t have enough staff or money to do both. The Obamacare article mentioned striving for patient-centered measures, but it remains to be seen how patient-centered we are going to be allowed to practice in the future.

Quality is still in the eye of the beholder. People in Government, insurance and academia prefer easily quantifiable data and still hold on to arbitrary or outdated numeric targets, even when the evidence to support them is controversial or refuted by science. They are often like the man under the streetlight.

Doctors on the frontlines, who live and breathe the complexity of health, disease and patients’ everyday socioeconomic challenges, know that for every clever metric someone can think up to measure quality, there are countless other factors that can render the quality parameters meaningless. What good does it do to prescribe the right medications for someone with chronic illness when the patient can’t afford them or keeps forgetting to take them?

In the same month my original post was published in 2009, for example, the American Diabetes Association revised its blood sugar targets for older diabetics. The evidence has shown that our usual targets were low enough to cause harm to many frail patients, yet doctors in this country are still given poor report cards if they practice with their patients’ safety and the new evidence in mind.

So, what is quality?

Quality is easing suffering and giving hope, not crunching numbers.

Quality is treating each patient in a sensitive, caring and competent manner.

Quality is serving the patient’s best interest with societal good in mind, not serving society with only an eye toward the individual patient.

Quality is having not only systems to promote safety and good practice, but people who care and invest their talents and abilities for the good of the patient.

Quality is diagnosing a rare disease like Addison’s early enough to give an adolescent girl her teenage years before they are gone.

Quality is making the diagnosis of a common disease like scabies in five minutes in a patient who has already cost himself weeks of discomfort and his insurance the dollar value of two emergency room visits and three prescriptions.

Quality is doing what matters to the patient. If we accept, even endorse, patients’ right to decide whether or not to be resuscitated if their hearts should stop, aren’t we then also allowed to listen to our patients and together with them formulate a care plan that they feel comfortable with for their chronic illness without fear of retribution by some Government or insurance reviewer for not following some more or less arbitrary guideline?

Quality is a word that lacks universal meaning. Every dictionary I have looked in has scores of definitions. It is a word people use for their own purposes.

We must be careful about letting others define the standards for our profession. If people with a more financial and less scientific and humanistic viewpoint set all the standards, technicians and computers will replace doctors.

The quality of a church service is, in my opinion, not adequately measured by how freshly painted the murals are, how well matched the choir uniforms are, how well-shaven the minister is or how clear his voice is when he puts his notes aside and speaks from the heart. If the Government were to set quality standards for churches, those things might be major quality indicators.

Fortunately, Church and State are separate in this country; health care and Government are no longer.

Health care, like religion, has a lot of intangibles, and even its substance is the source of many disagreements. I think that just like people go to church for different reasons, they seek health care for enough different reasons that our quality measures need to be very patient-centered, without losing sight of our “substance”, our foundation of science and humanity.

Quality is about addressing both the intangibles and the substance. Most of us know it when we experience it ourselves; the problem is building systems that guarantee it.