The Story #17: The Religion of Diagnosis

It’s been said things aren’t always what they seem. I say life isn’t always what it “should be.” This comes to mind because a lot of the advice I’ve been given is prefaced by and predicated on “should be” beliefs. I’ve been told any infectious diseases physician “should be” able to diagnose and treat actinomycosis. Maybe they “should be” able, but in my experience — the reality of the matter — is that they can’t or don’t.

I found that regardless of the doctor’s specialty, a physician’s ability to diagnose and treat illness is based upon that specific doctor’s experiences. In other words, don’t expect a doctor who has never seen someone with, say, malaria to recognize that his patient has malaria.

And if you are unlucky enough to have a rare disease or one considered to be rare — a zebra off the radar screen — the chances of an accurate diagnosis and treatment is sadly slim to none. Don’t take my word for it. There are plenty of documented cases in which patients with one disease were undiagnosed or misdiagnosed as having some other disease.

During my pursuit of a knowledgeable doctor, I had some very interesting conversations with doctors about the art and science of diagnosis. This “religion” of diagnosis is based in “should be” beliefs. There are as many differing opinions on the subject as there are medical specialties. Talking about diagnosis and treatment with doctors is like trying to talk about religious differences. Between the poles of competing certainties, there’s a discourse averse to question.

In my humble opinion, there are no clear cut answers — only questions played out on patients like guinea pigs everyday. If a procedure or prescription works, that’s proof of a correct diagnosis. The intent here is not to sit on the sidelines and throw grenades. My intent is to uncloak the man behind the curtain so we can all see what we’re dealing with as a starting point for improvement. My intent is to see reality for what it is with a view for a hopeful future.

So how difficult is it to put egos aside when saving face and personal wealth are involved? How many Davids does it take to overcome a Goliath? As many as it took to get President Barack Obama elected.

To illustrate my point, I’d like to tell you about a recent conversation I had with an internist which attempted to pinpoint who was responsible for coming up with his patient’s diagnosis and treatment.

Dr. Sandy Ibrahim is one of two doctors at PartnerMD in McLean, Virginia. The practice is a concierge internist service that promises 24/7 access to the doctor, no waiting and 1/2 hour appointments. Patients pay an annual membership fee of $2,000 plus all regular medical costs for the service. PartnerMD offers a half hour free non-medical consult to interested parties to see if this practice will work for your needs.

My impression: PartnerMD targets healthy individuals more interested in executive physicals and testing to monitor their health status than in chronically ill patients. My perception was confirmed when I received an e-mail ad from the firm advertising Valentine’s Day health packages that could include lunch with the doctor, massage, etc.

I was thankful to have been referred to a doctor who orders more in-depth biomedical tests and uses both alternative and conventional approaches to medicine in treating his patients.

The jest of my conversation with Dr. Ibrahim went something like this.

“First, I’d like to preface my questions with the assertion that any references to specific diseases or conditions are for example purposes only and are not an attempt to get your opinion on any health issues,” I stated. “My questions are designed solely to get a better understanding of how this practice differs from the typical internist’s office.

“I’ve found that specialists vary widely in their knowledge of various diseases, which has great impact on patient care,” I continued. “How will you know if the specialist you refer me to is versed in treating my specific disease or condition? For instance, I was referred to ob-gyn doctors more versed in delivering babies than in treating female problems like endometriosis. I was referred to infectious diseases doctors who had never heard of my rare disease, actinomycosis. As a result, the doctors did not diagnose nor treat me in spite of my providing positive lab, pathology and radiographic test reports.”

“And these were doctors in this area? In Northern Virginia?” she asked incredulous at the notion that a referred specialist would not be an expert in all aspects of his field. She then tried to reassure me that any specialists she referred would be knowledgeable in the condition for which the patient was referred.

“How will you know?” I asked. “What if the specialist isn’t one you’ve worked with in the past? Will you or an assistant call and ask the doctor about his expertise?”

“I guess we would call their office and inquire about sub-specialty expertise,” she said and then added that typically the internist relies on the specialist’s expertise to diagnose a particular ailment if one is not readily apparent to the internist after conducting standard medical tests.

“Can you please explain how this internist-specialist referral process works?” I asked. “From my experience, specialists require the internist to have made a definitive diagnosis prior to seeing a patient. The specialist’s efforts are then limited to conducting tests to prove or disprove whether the internist’s specific diagnosis is accurate rather than in trying to find out what is wrong with the patient.

“Furthermore, in my experience, tests conducted by one specialist revealed something wrong in another specialist’s field. And the same thing happened over and over with each specialist pointing to another specialist or back to the internist for diagnosis, so I never ended up with a cooperative collaborative comprehensive diagnosis or treatment,” I said.

Dr. Ibrahim responded that internists run standard preliminary tests and examine the patient to determine first, if the patient’s ailment is something the internist can treat, or whether the patient should be referred to a specialist. If a specialist is referred, she said, the internist relies on the specialist to diagnose and treat the patient. The referral, she said, is based on a general notion of the patient’s ailment.

This thinking directly contrasted my own experience of trying to get an appointment with a specialist without a doctor’s referral as evidenced by a January 13, 2009 letter I received from Paul G. Auwaerter, M.D., Clinical Director, Division of Infectious Diseases, Johns Hopkins University, in response to my complaint to JHMS Patient Relations. In the letter Dr. Auwaerter stated:

“As you were appropriately told, we ask that patients be referred by their physicians with a specific question. Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need.”

It didn’t matter that I had provided the empirical data — the positive lab, pathology and radiology reports — to prove my self-diagnosis and need for treatment by an infectious diseases physician when trying to set up the appointment. I found many doctors will only review the results of tests they order. I also found that many doctors have come to rely primarily on the first visual impression of the fully clothed patient in formulating their diagnosis.

In his book, How Doctors Think, Jerome Groopman, M.D. wrote:

“Medical students are taught that the evaluation of a patient should proceed in a discrete, linear way: you first take the patient’s history, then perform a physical examination, order tests, and analyze the results. Only after all the data are compiled should you formulate hypotheses about what might be wrong. These hypotheses should be winnowed by assigning statistical probabilities, based on existing databases, to each symptom, physical abnormality, and laboratory test; then you calculate the likely diagnosis. This is Bayesian analysis, a method of decision-making favored by those who construct algorithms and strictly adhere to evidence-based practice. But , in fact, few if any physicians work with this mathematical paradigm. The physical examination begins with the first visual impression in the waiting room, and with the tactile feedback gained by shaking a person’s hand. Hypothesis about the diagnosis come to a doctor’s mind even before a word of the medical history is spoken. And … of course, the specialist had a diagnosis on the referral form from the internist…”

With this in mind, I continued my line of questioning. “It’s been my experience that doctors have come to rely on visual observation of the patient for diagnosis,” I said.

“Yes, the radiologist!” Dr. Ibrahim exclaimed.

“The radiologist doesn’t diagnosis patient ailments,” I quickly chimed. “The radiologist only describes what he sees on the films. And if the prescribing physician — the only person the radiologist will talk to about his findings — doesn’t know the significance of, say, a redundant cecum, sigmoid colon stricture or fat plane enhancement, the radiographs are a waste of money.” Dr. Ibrahim hit on an emotional wound with her attempt to pin the responsibility for diagnosis on the radiologist. She had scratched open a reminder of all the fruitless effort I put forth to get my doctors and any radiologist to explain the meaning of such findings written in my CT scan reports. All I found were wounded egos and walls to save face in the wake of measures set up to protect one’s behind.

I proceeded, “Because my untreated ailments are polymicrobial and have eluded diagnosis and treatment by dozens of doctors, I have been trying to secure a physician who will work in conjunction with National Institutes of Health physicians within the Office of Rare Diseases Undiagnosed Chronic Disease Program so that I can be admitted to the program.

“The goal of the Undiagnosed Diseases Program is to provide answers to patients with conditions that have long eluded diagnosis. One of the main criteria for acceptance is for the patient to have a private treating physician who can converse with the physicians at NIH and who can continue treatment outside of the NIH when, and if, NIH doctors can diagnose what’s going on and determine the best course of therapy. Is this something you can help me with?”

Dr. Ibrahim responded that she would have to check with PartnerMD’s administrative offices on this.

“I tested positive for HHV-6, a virus which infects T lymphocytes” I went on. “This nerve demyelinating condition causes decreased memory due to loss of myelinated nerve fibers in a particular area of the brain called the subcortical white matter projections. In individuals with compromised immune systems, reactivation of HHV-6 can result in the suppression of bone marrow and inflammation of the tissues of the brain, liver or lungs. The Wisconsin Viral Research Group, Ltd. found that HHV-6 associated disease has been successfully treated with antiviral medications. Would you make an effort to find out which antivirals were effective against HHV-6 infections and prescribe this medicine or would you have to refer this to a specialist?

“I’d probably have to refer a specialist,” the doctor said, then asked, “This Wisconsin Viral Research Group. Is that a laboratory?”

“I’m not sure,” I responded. “I’d have to look it up on the internet.”

“I understand you do nutritional testing from the information I got off the internet,” I said.

“Not nutritional testing,” Dr. Ibrahim corrected. “We have a dietician who reviews patients’ dietary needs and gives advice.”

“Oh,” I remarked somewhat caught off guard and disheartened upon realizing that I had assumed, maybe hoped, that MDPartners was something different than what I was finding. Dr. Ibrahim instantly picked up on my reaction.

“You know,” she said as she began searching her computer for contact information. “I think you’d be better off seeing Dr. Levin. He does the kind of nutritional profile I think you’re referring to. One of my patients sees him. He measures amino acid and other vitamin and mineral deficiencies. We don’t get into that level of detail…” She provided me with his address and phone number.

I thanked her.

“Just one more question before I go,” I said. “It’s an ethics question I’d just like to know if you don’t mind answering given that your firm advertises patient advocacy. How would you handle a situation in which the patient discovered that the biopsies taken during a procedure were taken from an area other than the documented photographed area of abnormal tissue? Would you discuss this with the specialist who made the mistake? During my colonoscopy in 2005, the gastroenterologist photographed and documented in my medical records abnormal colonic mucosa in the sigmoid colon. The pathology report indicated nonspecific inflammatory specimens were taken from the descending colon.”

“Well the descending colon is connected to the sigmoid colon. It’s possible he took specimens at the juncture…” she responded.

“The abnormal mucosa was mid-sigmoid,” I said.

“Mid-sigmoid,” she repeated then went on to say how pathologists aren’t aware of where in the body specimens they examine come from. She said they just get this tissue, which they view under a microscope to determine a pathogen… It was an obvious attempt of one doctor to cover for another in the profession. Every pathology report I have pinpoints exactly where in the body the tissue being examined came from.

“This is an ethics question,” I said. “Assuming I have labeled copies of the photos from the colonoscopy showing the abnormal mucosa mid-sigmoid and the pathologist’s report stating specimens were taken from the descending colon, would you point out the discrepancy to the gastroenterologist or would you leave it up to the patient to do so?”

“Well, I’d frame it in such a way as to avoid making the gastroenterologist defensive,” she said. “I’d probably ask him when he plans on performing his next colonoscopy.”

~ by doctorblue on January 30, 2009.