The internist I’ve been seeing my entire adult life recently retired. This essay, which originally appeared here in 2014, was not about her. But it did concern the sometimes—maybe always—precarious relationship between medical professional and medical naïf, one that I will now need to renegotiate with a new internist while bearing, believe me, this experience in mind.
The doctor was sitting in a chair next to the window, gazing out. His features gave nothing away, save serious thought. I watched him from my hospital bed, trying to discern meaning in his own effort to discern meaning in my symptoms. Silence. Finally, he turned back to me and spoke: “Medicine is an art, not a science.”
Screw you, bub. I’m the writer here. You’re the empiricist. So let’s go: What’s the diagnosis?
By then I had been running a fever for over a week. Every day it spiked, and every night it broke, and every morning it returned, rising throughout the day until, around midnight, it reached 103 or higher. Once I realized I couldn’t shake the fever, I had called my doctor, who turned out to be on vacation. So I went to see her partner. This was on a Tuesday.
Dr. Bub prescribed antibiotics and cold-water-only baths. The antibiotics didn’t work. Neither did the cold baths, though I did learn that I’d make a lousy POW; after 30 seconds of immersion I was ready to provide detailed troop movements.
Another visit to Dr. B, another round of antibiotics: This was Thursday. That evening the fever spiked. That night the fever broke. Friday morning, the fever returned.
Friday. The beginning of a weekend—worse, a three-day holiday weekend. Dr. B told me over the phone that if we couldn’t figure out what was wrong today, he was going to hospitalize me, so that he could monitor my symptoms on an ongoing basis rather than wait for his office to reopen on Tuesday. Then he sent me to the hospital for an esophageal probe, a procedure that involves a tube snaking its way from your mouth down your esophagus through your stomach and into the small intestine. The procedure provided more insights into my limitations as a potential POW and, I learned via a phone call from Dr. B after I returned home, none into the nature of my ailment. He told me to pack my bags and take a cab to the hospital.
He met me in the lobby. He’d been up until 2:30, he said, looking through the literature. And he’d finally found a diagnosis that might match my symptoms: endocarditis, an infection of the inner lining of the heart. If he was right, it should respond to the kind of massive dose of antibiotics that a hospital could provide. And if he was wrong, at least I’d be in a hospital.
That evening, the drip protocol began.
Saturday: During my usual morning wait to see if the fever would return, Dr. B came to my room, looked out the window, made his pronouncement about art and science. That same day, I got a phone call from a doctor friend. I told her about the diagnosis of endocarditis, but, I said, it was only provisional. Maybe the word provisional is what prompted her response.
Medicine as we know it, she said, is only about a hundred years old. It’s in its infancy. We’d all like to think it’s a science of certainty, she said, but it’s not: A lot of diagnostics is guesswork.
Guesswork? Was this, then, my fate: a guess made by a desperate doctor in the middle of the night?
The fever didn’t return that day. Nor on Sunday. By Sunday evening I felt well enough to get out of bed and stretch my legs. Patrolling the hallway, wheeling my drip beside me, I thought about what the two doctors had said.
Medicine is guesswork, yes, but only in the same way that writing is guesswork. You follow an intuitive path. You make a guess. Only it’s not just a guess. It’s—whether as the result of choosing among endless aesthetic options or as the result of chasing down the most relevant medical literature—an educated guess. Which was what Dr. B had made—and he’d had enough of the artist in him to be a scientist who got a tough call right, and who saved my life.
Sunday night. Midnight. I’m startled awake by a nurse, swaying in the doorway, shouting at me.
“Happy New Year!”
Science? No.
Art? No.
No, wait. Performance art, I decided, and, curling up in the hammock of a correct diagnosis, I went back to sleep.
It is worth noting that a diagnosis of endocarditis often requires a trans-esophageal echocardiogram, or an ultrasound probe delivered through endoscopy. This was not to look at your stomach or bowel, but was quite critical in making the right diagnosis – and not a random or irrelevant test. Endocarditis is also notoriously difficult to diagnose (and treat) due to a high variability of presentations and so a set of criteria called the Duke Criteria are used.
Thanks! All these points are indeed worth noting. I very much appreciate them. You’re a doctor, I imagine?
I wish more doctors were willing to admit this. Too many think (perhaps because medical schools *taught* them to think) that Medical Science (caps intentional) has already cataloged *everything* (especially in industrialized nations like the U.S.). When presented with symptoms they can’t diagnose to something specific, when testing is inconclusive, when standard treatments for what they think it *might* be don’t work… too often, the doctor concludes “it must be psychosomatic.” Or, if the results indicate a disease that has not been known to exist in the area, and the patient has never traveled to where the disease *is* known to exist, they assume its impossible for you to have that disease. There’s also a psychological trait in U.S. doctors where, deep down, they seem to think new diseases only emerge in third world countries—supposedly here, our “advanced science” and our medical literature magically ensure that we’ve already encountered every native disease on this continent, and that nature simply stops its evolutionary process: existing bacteria, fungi, etc. in the environment simply *don’t* mutate into more lethal forms, if they’ve been previously classified as “non-harmful.”
What these medical professionals are missing is this: Life Evolves. Our knowledge is limited, even in “advanced, industrial” nations. We as a species are introducing rapid, sweeping, and strong changes to our environment: climate change, massive spread of multiple chemicals (and heavy metals) used in farming and industry and homes, humans redesigning habitat and humans moving more into areas that previously had little to no human contact, and global shipping and travel allowing both infectious agents and their carriers to move from area to area, continent to continent.
Another place they often stumble: Life is not a petri dish. Laboratories are *designed* to isolate, to limit factors, to study one thing in particular—because contamination introduces new influences and factors that can render data gathered as suspect or meaningless. In scientific terms, this makes imminent sense: you want to control for everything you possibly can account for, you want to limit exposures, elements, factors to the ones you’re actually controlling for, and you want to produce repeatable results. This is the basis of scientific investigation.
However, nature doesn’t do that. Nature brings random elements together, allows the introduction of non-controlled factors (i.e. a single cold day in warm weather, introduction of a bacterium into a new environment by a migrating bird’s poop landing in just the right spot, etc.). Darwin said species that adapt best survive best—and there’s a lot of environmental changes species are having to adapt to. In Britain, researchers found that the balance of soil bacteria has not only altered significantly, but also that previously placid bacteria have developed more aggressive attack systems on their soil neighbors—bacteria that were long thought to be stable. In the U.S. I saw a report recently that as we kill off parts of the food chain that competed with them for food, rats and mice are filling in the niches—and may not only multiply but also over time grow larger as a result.
Being unwilling to confront facts like these, to account for environmental changes, globalization, etc. is a flaw in thinking and in approach to medicine. For example, there’s an ongoing debate in the tick disease field: research in the mid-20th Century indicated that Lyme’s Disease is only carried by a certain tick at a certain point in its lifespan. Because that tick is native to the Northeastern U.S., many medical authorities deny the existence or possibility of Lyme’s Disease in the Southeastern U.S.
However, many patients in the South (including some tick researchers) have disease symptoms *and* laboratory results that indicate, if not prove, they are ill with Lyme’s Disease. Some researchers cling to the older material as definitive; others are arguing that the old material needs to be revised with newer data that indicates we didn’t know all there was to know about Lyme’s Disease and ticks in the 1950s-1960s. Some are debating as to whether it was in the South all along, or whether tick carriers have changed, or whether the disease germ has mutated, or whether this is a related germ that creates very similar symptoms.
And as the academic debate rolls on, it’s the patients who lose.
Many patients in the South who have both symptoms *and* lab tests that indicate Lyme’s Disease are unable to get insurance coverage for medical treatment—because the official literature says “Lyme’s Disease doesn’t exist in the South.” Likewise, many doctors rule out the possibility of Lyme’s as being the culprit because “we know it doesn’t exist here,” or it never even crosses their minds that it *might* be Lyme’s.
The big problem is this: Lyme’s is a disease where a specific type of antibiotic treatment is *required* in the *early* stages of the disease. If left untreated or improperly treated, it creates a chronic and ongoing condition (and subsequent other conditions) that medical science has yet to conquer. Because the medical community at large is caught up in this debate (those who even are aware of it outside tick disease circles) and *has not made widespread changes in protocols that at least alert doctors that this *may* be a disease in the South and to treat it accordingly*, patients are needlessly suffering, or often must set out on a search to find a doctor who will treat them… and their clock is ticking. Likewise, many need the financial help insurance carriers refuse to give, since of course, the official literature says “that disease does not exist in that region.”
This is just one of many examples in how the *thinking,* the philosophy of medicine and the psychology involved in how doctors, researchers, and medical authorities think in the West (and especially in the U.S.) creates narrow-thinking, dismissal of evidence or information that lies outside the official sanctioned information framework, unawareness of their own thought/information limitations, etc… all of which means that many times, patients are ignored, dismissed as psychosomatic, or refused treatment or funding for treatment by doctors and insurers.
As scientists, the medical community here *needs* to examine stratification and ignorance and fear in their thought processes and in what they teach to new doctors—psychology and philosophy *do* play a role in science (medical or otherwise), because it’s *humans* who are *doing* the science… and humans are prone to a host of perceptions, emotions, and traits that can effect scientific research—from the conception of the question and how it is approached, to the gathering of information to the conclusions that are drawn. Narrow-thinking and stratification affect the science; too often people rule things out because “I know that’s not so,” even when there’s evidence to the contrary that *has* to be taken into account.
Some of the pressures doctors and medical science faces come from the public: we’ve been raised/taught to think that doctors know pretty much everything about medicine and our bodies, that their knowledge is a vast accumulation blessed by the glow of modern science (as opposed to what is seen as early medicine’s superstitions—which is sometimes true, sometimes not true). For the most part, the public sees drugs and treatments as the answer to all ills, and only in illnesses that are widespread where we *know* doctors are still searching for better answers (i.e. cancer, nerve grafts, diabetes, etc.) are we willing to accept that doctors don’t know everything, and that there isn’t a pill or a treatment for every ill.
That’s a lot of pressure on doctors… and too many fail to address how that may affect their own thinking and approach to medicine, most especially when they’re confronted with a case that is outside all current medical knowledge (that they know of). They also fail to address how many doctors become stratified in their thinking, and how this may be a response to or embracing of the public’s perception of doctors and medicine.
The news isn’t all bad: there are doctors and researchers out there who *are* willing to address these issues, who *do* resist stratification, who *are* willing to admit to gaps in our knowledge, to the way our environment is changing, to the possible emergence of new diseases (not simply adaptions in known diseases like how the influenza virus changes every year)… but often these doctors and researchers experience knee-jerk rejection from the establishment as a whole.
That is something we need to change. In fact, in some ways it’s already changing—as the public gains greater access to the work of these doctors and researchers (as well as to alternative fields of medicine), it’s literally forcing something of a re-think in medical circles, though it’s also creating a lot of hot debates and mis-information.
For instance, the anti-vaxxer movement: many exhibit a knee-jerk rejection and scorn of these people… but there have been benefits from their dogged resistance to and questioning of our vaccination system:
*they have forced a re-think and re-examination of what had been accepted as “safe” levels of various vaccine additives, preservatives, etc. in light of more recent date on those substances, rather than continuing to accept data that was in many cases, formed on knowledge we had fifty or more years ago. What we “know” on those substances and amounts for tolerance etc. had in some cases changed since that time, but inertia had prevented that newer knowledge from being applied.
*many vaccines were shipped in 5 dose bottles rather than single dose—why? Because it was more cost-effective for manufacturers. Anti-vaxxers rightly pointed out the problems with this system: many 5-dose bottles required shaking/remixing (the material would settle and stratify on the shelf) before drawing out a dose, and often medical personnel forgot to do this. Because of that, some patients received mostly additives in their shots, or mostly viral material. This meant that some patients didn’t get the proper dosage of viral material, and also that some patients were exposed to much higher levels of the additives and preservatives.
*the fact that a 5 dose bottle was exposed to the environment after the first dose broke the seal, meant that the remaining doses risked contamination—and each time the seal was re-pierced, that risk went up. This in part necessitated that *more* of the preservatives, anti-biotics, etc. be included in the 5 dose bottle.
Because of anti-vaxxer protests about this, many vaccines were changed to the single dose bottles they should have been in to begin with. Yes, it’s a little more costly for the manufacturer… but the resulting added safety to patients makes that worth it.
As well, anti-vaxxers (along with others) are forcing a re-evaluation of our drug/vaccine approval process in general: they point to the fact that pharmaceutical companies do their own testing and trials… which leaves corrupt companies with the opportunity to re-test and repeat trials until they get the results which will ensure approval, then present *those* results to the FDA. They point to how companies sometimes “forget” to disclose severe side effects. They point to how much of the FDA is funded *by* those companies, and how many in the FDA, CDC, and USDA administration (along with some researchers) have ties *to* those pharmaceutical or agricultural companies (conflict of interest at the very least). They (and many researchers, including a study released by Harvard) point to these practices, along with the rise in cases where a drug was approved, the creator company made money off the patent… and then later, after the money was made, the company faced a recall of the drug, and/or the FDA enforced an upgrade of severe side effects on the black box, and/or the company paid out in lawsuits or settlements, and/or the company was hit with a fine. The problem is, far more money gets made from marketing and selling the product, than it costs them to pay settlements, legal decisions, and fines—so the practice continues.
Other protesters have called to attention the infiltration of pharmaceutical companies into doctors’ offices, how doctors are often persuaded (and sometimes given “perks” or outright bribes) to promote a new drug to their patients, how advertisements for drugs has affected all this and promoted the cycle of “new drug that is no better than a patent-expired drug but may contain worse side effects.” They point out the creation and promotion of unneeded drugs and classification of things *as* diseases that need drugs which often don’t (ADHD is a current example), where patients often developed *worse* symptoms when put on said drug.
In short, our current medical and pharmaceutical establishment (and the agencies that are *supposed* to provide oversight) are under a lot of examination and heat at this point. The public is pressing for transparency, for outside and unconflicted oversight, for updating of information and practices in light of more recent knowledge, and for accountability.
Whatever “crackpot” ideas or beliefs one might attribute to some of the people demanding this, there’s no denying that their voices, pressures, and movements are pushing the medical industry to do a long overdue self-examination of accepted thought, accepted practices, and in some cases, accepted corruptions.
Medical doctors are largely (but not entirely) full of cow caca, period. They are the product of owned universities that teach what the pharmaceutical corporations want them to teach. That is, do treatment with our drugs not healing.
There are no incurable diseases… there are people who have such low self esteem that there is nothing that can be done for them…. and drugs are sure to make you sicker.
Between the bubonic plague and the sweating sickness.. (plague five times) most but not all the people of Europe were put in mass graves. How is it those who did survive, did so without the drugs of today???? Come on! We live in a death cult… filled and supported daily with fear…. by those who “think” they are in charge.
In charge of who? you?? Why give away your authority, your sovereignty??? Who are you allowing to own you? The pharmaceutical corporations have done such an excellent job of buying the American public… We think they are the best. We live in the sickest first world country, our babies receive over forty vaccinations … for what?
These vaccinations do not make us healthier… they do not make us more immune, they do not keep our kids from getting a long list of ailments… they make us sicker… so we will buy more drugs from the “legal” cartels….”God Damn, the Pusher Man”
We live in a society that condemns original thought. That very soon may be burning our libraries. As a physician I cannot say,” I can heal cancer” or “this herb will heal cancer”… it is against an unwritten law that can put me in jail. Once you allow yourself into (some) hospitals, refusal of their protocol can result in a call to the police!!!
Listen, even I could not make this up… it is insane.
My night-sweats were caused by Still’s Disease, an auto-immune form of rheumatism.
Successfully controlled with toxic anti-cancer drug Methotrexate.
Still’s Disease is very rare,particularly Adult Onset which I have.
There is no test for it. Everything else is tested for and ruled out.