By Daniel Merino
In January of 2016, I was standing on a snow covered deck watching the thick flakes of a Sierra Nevada snowstorm fall silently from the sky. I caught myself staring off into the woods and with a blink, realized that I was feeling…. off, mentally fuzzy, and inexplicably tired. And not just that day, but for a few weeks. Sure, I would often have a beer after a day of snowboarding, but nothing that could have caused this malaise. The symptoms were subtle but present, affecting my mind, making it harder to think and remember things, making getting up in the morning a little more difficult than it should have been.
Over the next months, my symptoms got worse. Ever so slowly the fatigue increased, the brain fog came to deeply affect my memory and cognition. I would come to feel like a walking zombie and no amount of sleep, healthy eating, exercise, relaxation, or meditation would have any positive effect. As the weather warmed and the ski season drew to a close, my symptoms did not dissolve along with the melting snow. This was not an allergy or a weird reaction to the cold dry air of the Sierra Nevada mountains. This was something more and it was starting to affect my life.
I wanted to get better, so into the American healthcare system I dove. I went online, to friends, to general practitioners, and to specialists. I experienced the long wait times for appointments, the hunt for misplaced test results, and the difficulty of proving to my health insurance that they should cover my meetings with specialists. I received contradictory diagnoses and was tested for dozens of illnesses ranging from Lyme disease to hypothyroidism and for years none of these inquiries produced anything more than bills, missed work, and a slowly growing fear that I would be stuck with a muddled mind for the rest of my life.
I learned something during this process that I had not expected. As the US medical system has modernized, it is increasingly placing more responsibility on the patients it is supposed to serve. Some of this shift has been intentional and meant to empower patients. Some of it was caused by the unforeseen consequences of technological progress. And some of this new responsibility has fallen on patients because the system is ignoring an age-old problem that is just now coming to light. I experienced a system that placed an unexpectedly large burden on me, the patient, in guaranteeing a good outcome for my own health. I was neither informed of nor prepared for this responsibility and when I failed to play my part, I suffered for it.
* * *
Looking back, I was a little naive when I first went to see a doctor in the Spring of 2016. I thought I would walk into the new medical building a few blocks from my where I was living in Santa Cruz, describe my symptoms a doctor, they would order some tests, and I would be cured within a few weeks. That is not what happened.
In the latter half of the 20th century, western medicine underwent a shift in how it thought of patients. As Dr. Thomas Szasz and Dr. Marc Hollander wrote in 1956, “The rapid growth of science during the 18th and 19th centuries led to the development of the physician as the expert engineer of the body as a machine.” Inspired by Freud’s work to consider the “patient as a person,” Szasz and Hollander proposed a new way to think of the patient-physician relationship.
In their seminal 1956 paper titled “ A contribution to the philosophy of medicine: the basic model of the doctor-patient relationship,” the psychiatrists describe the old-style patient-physician relationship as a paternalistic one, where the physician acts unilaterally to achieve what they think is the best outcome for a patient. In contrast, they propose and define two alternative collaborative approaches. First, a “guidance-cooperation” relationship, where the patient is informed and can give feedback, but is expected to defer judgment on treatment. And second, a “mutual participation” relationship, where the patient is fully informed and ultimately makes their own treatment decisions with assistance from their physician.
This shift in perspective sparked a massive transformation in American healthcare. As the bioethicists Ezekiel Emanuel and Linda Emanuel wrote in 1992, “During the last two decades or so, there has been a struggle over the patient’s role in medical decision making.” The struggle, they say, was between “autonomy and health, between the values of the patient and the values of the physician.” The medical community has overall sided with the autonomy of the patient, aiming to engage and empower them in the decision-making process of medicine. “In modern medicine, you don’t have a paternal view on patient symptoms. You have to believe what the patient is telling by default,” says Dr. Christopher Brook, an otolaryngologist at Boston Medical Center. Dr. Hardeep Singh, a researcher, professor, and physician at Baylor College of Medicine, agrees. “The patient is the source of information for the diagnosis. Hearing the patient story and the patient accurately giving that story is such an important aspect of this,” he says. “That [story] might determine what we think about and what we test.” And it should. After all, lab tests can only do so much. Especially with chronic and nuanced illnesses, the collaborative approach to medicine has many potential benefits.
But what if the patient has the story wrong? What if they make a mistake?
This well-intentioned shift to a collaborative patient-physician relationship relies on the patient to be accurate, informed, and objective in both their reporting of symptoms and the decisions they make. And to be honest, that is a lot to ask of someone. On top of the stresses of work, bills, and everyday life, a patient is by definition also dealing with the added burden of a health issue. It is no surprise that patients make mistakes all the time, I made many throughout my quest for a diagnosis. The surprising thing is that when I made wrong turns, when I went down dead-end rabbit holes, I almost always dragged my doctors with me.
* * *
When I moved back to Santa Cruz from the mountains, I picked up a job working at a native plant nursery on the edge of town. At this point, I was feeling perpetually tired and the brain fog was starting to become noticeable on a day to day basis, but It wasn’t so bad that I couldn’t water the sedges or transplant purple needlegrass. Nevertheless, I made an appointment to see a doctor at the Palo Alto Medical Foundation’s Westside Santa Cruz offices. As an outdoorsy person, I spent much of my free time in the redwoods, meadows, and coastal sagebrush of Central California. Ticks tend to love a lot of those paces, and Lyme disease is present in California. I had looked up the symptoms of Lyme disease online, they somewhat matched my symptoms: fatigue, neck stiffness, flu-like symptoms, headaches. Lyme certainly seemed possible.
When I went into the doctor the next week I brought up Lyme. The doctor asked if I had been bitten by a tick recently. I said no, not since I had come back down from the mountains, but it was possible I had been bitten months back and missed it. I described a few of my symptoms that matched the disease. The doctor seemed convinced that it was possible so he ordered tests for Lyme as well as hypothyroidism, another possible cause of the symptoms I was describing. I also mentioned that for the first time ever I was suffering from allergies, so he sent me home with instructions to get a NETI pot and some anti-inflammatory nasal spray (aka flo-nase).
The blood work came back a few weeks later and was negative for both. And that should have been expected. I only had two of the major symptoms, headache and fatigue, had no recollection of a tick bite, and had never developed a bull’s eye rash. There was no real reason to test for Lyme other than the fact that I had asked for it and framed my symptoms in a way that supported my hypothesis.
But shouldn’t the doctor have caught that?
Dr. Richard Kravitz is an MD and public health researcher at the University of California, Davis. He studies, among other things, the influence of patient requests on physician actions. In a 2002 study, Dr. Kravitz recorded 559 doctor visits to measure how much patient requests influence physician actions. All other things being equal, when a patient asks for a specialist referral they are 4.1 times more likely to get one than if they didn’t ask. For prescriptions, the odds were 2.8 times better for those that asked. Dr. Kravitz says that “the great majority of explicit requests are fulfilled, about 80% or more.” When there are no risks of causing harm, but also little or no expected benefits, he says that often “physicians will just go along to get along.”
And a lot of people ask for things. ”In about 25% of visits, patients come in with specific requests, whether its tests, specialty referrals, or medications,” says Dr. Kravitz. The assumption of the collaborative approach is that patients are requesting actions from a correctly informed and logical perspective with the help of their doctors. But bad stories get told, the wrong decision get made.
You have to be careful what you ask for as a patient, you may have more influence than you think.
But the question that follows, and the question that I asked myself as I started to unravel the story of my own personal medical mystery was: Why did I get my story wrong? What led me to make bad decisions that cost me time and money while my illness continued? As far as I can tell, I was led astray by another piece of the modern healthcare puzzle: the internet.
* * *
After the Lyme tests came back negative I sort of gave up for a while. The nose rinses were helping with my allergies a bit, but the feeling of perpetual tiredness had worsened. The brain fog had gotten thicker and I was becoming forgetful, absentminded, and felt mentally slower, but I had gotten hired as a manager for a small abalone farm up the coast that summer so had better things to worry about. It was an easy job with flexible hours, relatively interesting tasks, and a surf break quite literally steps from my office door. The better things to do included surfing and barbeques.
I often made deliveries to the seafood vendors and high-end restaurants of SF. From the farm, it is two hours up CA-1 to the city. One day the fatigue was a little worse than normal and I was out doing deliveries. Dan Carlin’s Hardcore History podcast was playing through the speakers of the large white truck and the farm dog, Jax, a little brown chihuahua, was passed out in the passenger seat. About 45 minutes south of the city I hit buzz strips, jerked awake, and realized I had joined Jax momentarily for a nap. I pulled over. Even after the shock of catching myself asleep at 60 miles an hour, I passed out within seconds of leaning the seat back.
This was a wake-up call. Something was seriously wrong with me and the doctors didn’t know what. So, to the internet I went. After some Googling, I came across Chronic Fatigue Syndrome, CFS, and started reading. The causes of it are unknown, the effects match almost exactly with my symptoms. The treatments are limited, but Stanford, just over the hill from Santa Cruz, has a lab dedicated to the study of CFS. This could be it, I thought. It explains the difficulty I had experienced diagnosing my problem. While I wasn’t sure if I had CFS I was convinced that it was at least worth testing for. I got on a waitlist for the Stanford clinic, I brought up this idea to physicians, I got referrals for specialists that I needed to see before I would be eligible to join the Stanford lab. In total, I spent 9 months on this goose chase that all started from something I read on the internet. And no, I don’t have CFS.
“I know from data that a large fraction of the American population is going to the internet to diagnose and treat themselves,” says Dr. Ateev Mehrotra, a professor of health care policy at Harvard College of Medicine and a practicing MD at Beth Israel Hospital. Since my symptoms began in 2016, I, like 78% of US internet users and 59% of the US at large, have been to “Dr. Google” searching for answers.
Over these last three years, I have learned many things about many illnesses from Google Medical School – I have a 153-page packet on chronic fatigue syndrome and know the arguments for and against the existence of toxic mold poisoning. I know all the symptoms of Lyme disease, how to test for it, and how unreliable those tests actually are. I know that since my mom has hypothyroidism, there is about a 15-20% chance it was passed on to me through genetics. In my case, the problem wasn’t that I was assuredly self-diagnosing, as Dr. Mehrotra says “It is relatively rare for a patient to come to me saying they looked something up and tell me ‘I have this!’,” nor was the problem that the information I found was medically questionable. The problem was that I was spending hours and days and weeks learning about illnesses that I didn’t have.
When faced with complicated problems and lots of information, a situation just like the one I found myself in, the human mind tends to do some pretty illogical things. “Most people think that they make good decisions, but if you monitor what you do and try to be as objective as possible, you can quickly find areas where you haven’t done such a good job,” says Dr. Pat Croskery, a researcher and former emergency room physician who now studies clinical decision making at Dalhousie University in Canada. He explained to me how mental shortcuts called heuristics are tricks that everyone, including doctors, use to make life easier. But these tricks are fallible and when they go wrong they are known by a different name, cognitive biases.
“There are about two hundred of these and they exhibit throughout all of medicine,” says Dr. Croskerry. There is the availability bias, the tendency to overestimate the likelihood of the last thing you saw happening again. There is the anchoring bias, where a person doggedly sticks to their first idea in spite of evidence that should change their mind. But perhaps the most well known and most relevant cognitive bias to my story is the confirmation bias. It is the tendency to interpret new evidence as confirming one’s existing beliefs or theories, and inversely, the tendency to ignore evidence that doesn’t support one’s beliefs. The confirmation bias led me to perceive the symptoms I had as support for my belief that I had Lyme disease or chronic fatigue syndrome while I would simultaneously and subconsciously minimize or ignore symptoms that didn’t align with my theories. “Any rational being will agree that doctors are vulnerable to these errors,” Dr. Croskerry says. “If these doctors are vulnerable, then how can you expect a layperson who has no training whatsoever and reads an article online, to be better?”
When faced with my own medical mystery and the mountains of health information online, it was inevitable that some of these cognitive biases would lead me astray. Be careful what you read and think.
At last count: patients have to be mindful of what they say, careful of what they read online, and watch out for what they think. If we do all of these things, then the precision machine that is the medical system will work, we will be cured, and all is well right? If you have ever been to the hospital, you know as well as I that it doesn’t often go that way.
* * *
I was biking over to the medical building on a gloomy Friday afternoon. It was December 2018 and my allergies had still not gone away. Dr. Meehan – not the guy I had seen earlier in the year about Lyme – asked about my sleep habits and about my breathing. I told him I sleep alright, but hadn’t been able to breathe well through my nose for last year or so. After I had developed allergies for the first time the year before I had never quite gotten back to 100%. Immediately upon hearing this story, Dr. Meehan declared he knew what was wrong with me.
“Chronic sinusitis. I have had it myself for 30 years,” he said.
He stuck an otoscope up my nose to confirm.
“Yup. Chronic pansinusitis,” he said, adding a pause between “pan-” and “-sinusitis” for what I can only assume was dramatic effect.
Dr. Meehan described how untreated sinusitis, inflammation of the sinus tissue, can cause drowsiness and headaches that feel like brain fog.
Easy as that. I was sent away 10 minutes later with a referral to an ear nose and throat specialist, a prescription for a two-week course of antibiotics, and directions to continue the nasal spray and a neti-pot.
I remember clearly one moment during those two weeks. The swelling in my sinuses had pretty much erased my sense of smell but the antibiotics seemed to be working somewhat. One day, walking around my neighborhood on a partially sunny afternoon, a light rain started to fall. And I could smell it. That fresh-rain-on-wet-cement smell. That wonderful, beautiful smell that I hadn’t experienced in longer than I could remember. I love that smell. I had missed that smell.
Two weeks later I was across town at the ENT, sitting in a chair and drooling out of my numbed face with a long, tentacle-like camera six inches up my nose. I was here to confirm the diagnosis of Dr. Meehan, chronic pan-sinusitis. The curt and impersonal nose doctor had other ideas.
“You have a slightly deviated septum, but no sinusitis.”
I remember those words because they defeated me. I was so sure I had an answer, but again I found myself at a dead end. This time it was not due to my own mistakes, but because of someone else’s, the latest in the long list of diagnostic errors that had plagued my life for over two years.
Diagnostic error can spawn from the failed responsibilities of the patient, like the Lyme disease and chronic sinusitis quests I went on, but it can also come from the hundreds of other parts of the medical system that can go wrong. Diagnostic error can emerge from incomplete medical records, incorrect prescriptions, mistaken dosages, failure to communicate test results, and yes, cognitive failures by physicians, that is what Dr. Croskerry studies after all. Mistakes happen in medicine and the patient safety movement has made serious progress towards ensuring that the system minimizes or catches them, but the system and the professionals that make it up have somehow missed diagnostic error.
“You better watch out for yourself,” says Dr. Mark Graber, the Chief Scientific Officer of the Society to Improve Diagnosis in Medicine (SIDM). He and Dr. Singh are leading a movement to bring the problem of diagnostic error to the forefront of medicine. “Ten years ago there was absolutely nothing going on, no articles, no discussion, no papers, so we are very gratified that ten years later that there are thousands of people who have attended our conferences,” Dr. Graber says. The National Academies of Medicine released a report in 2015 on diagnostic error saying “Improving the diagnostic process is not only possible, but also represents a moral, professional, and public health imperative,” and the following year, the World Health Organization released a similar report outlining the problem and potential solutions for diagnostic errors, calling them a “global priority in patient safety.” The research on diagnostic error, while young, shows a need for change. The awareness is growing, but action on the ground is severely lagging behind.
A diagnostic error is simply a missed, wrong, or delayed diagnosis, and they happen at a shockingly high rate. According to current best estimates, diagnostic error occurs in somewhere between 5-10% of all outpatient cases and are found to be a contributing cause of death in 15-20% of autopsies. The low end was estimated in a study by Dr. Singh in 2014 and would result in 12 million Americans affected diagnostic error every year. About “half of these errors could potentially be harmful.” A 2013 study found that between 40,000 and 80,000 people die each year from diagnostic error in hospitals and at least that many suffer permanent disability because of them. When hospital deaths are combined with outpatient and primary care errors, that number is probably much higher.
For all of the harm that has been found and reports that have been released, hospitals and the healthcare system have not even begun to track diagnostic error, much less implement changes to mitigate it. “There are at the moment no good systems to capture these errors. Physicians rarely report them and patients don’t have the means to report them,” says Graber. If you want to track diagnostic error, “the burden is falling more in the patient’s lap. There are 5,000 hospitals out there but I would guess less than 50 are studying diagnostic error.”
Between the dozens of patients a medical professional sees each day, the short times they see each one (on average 17.8 minutes per patient), the complex electronic record keeping that must be done, the lack of continuity of care and as Dr. Singh says, “a fear to talk about these issues because of the malpractice culture,” neither tracking these errors on the large scale nor catching them on the individual scale are done.
There are solutions to this problem, Dr. Singh says that “engaging patients in the diagnostic process is probably one of the single most important messages for people to know. But people must know that there are vulnerabilities, that things can go wrong, and know what you can do to prevent harm.” That prevention often falls to the patient. When the specialist in Santa Cruz disagreed with the chronic sinusitis diagnosis, he didn’t call up Dr. Meehan to get to the bottom of their disagreement, he simply entered the info into my chart and went on to the next patient. The impetus fell to me to figure out what was going on. And again, like so many times before, dropped the ball here because I didn’t really know what to do. I should have gone back to Dr. Meehan and discussed the results. I should have gotten a second opinion, but I thought the system would guide me to do all of these things and it didn’t. Modernization has brought a lot of good to the medical world, but it also asks a lot of those who are suffering.
It is up to you and me to be the caretakers of our own health. But one would hope that 40,000-80,000 thousand deaths due to diagnostic error would be enough to motivate the system to change, right?
Maybe. But it hasn’t happened yet.
“I think we need patients really embedded in demanding policy. We need patients getting policy over the finish line that will keep us safe,” says Sue Sheridan, Director of Patient Engagement at SIDM. Because aside from a few motivated physicians, a couple of advocacy groups, and the small group researchers trying to understand this problem, there is not much momentum in the system to change.
Add another burden to the list.
* * *
A few weeks ago I woke up early to bike across Boston for an appointment at Boston Medical Center. It is always a little weird to bike to a hospital, I almost feel guilty, like if I can pedal myself to and from this place, then I can’t really be all that sick. But pedal across town I do and I make my 9 am CT scan. It is a quick procedure, no more than 5 minutes in the large white machine that likely costs more than many homes.
I have an hour to kill before I am supposed to meet with Dr. Brook to go over the CT scan of my sinuses. Our first appoint came after I moved to Boston in late 2018 for graduate school. Early in 2019, and for the second time in the span of a year, I had a long snake-like camera stuck up my nose (this time without anesthetics) and to Dr. Brook, it looked like sinusitis could be the cause of my symptoms. It seems Dr. Meehan might have been right. Dr. Brook wanted to double check and this CT scan would give us a definitive answer.
These three years have been beyond exhausting. I had known that dealing with American healthcare was a pain in the ass, but I had not expected the medical responsibilities that were placed on me. Modernization has shifted medicine to be more compassionate and respectful of patients as people. It has empowered them to be their own decision makers and equal collaborators in care. The internet has enabled anyone with a phone or computer to access the entirety of medical knowledge with a few clicks. And specialization, technology, dispersal of care, and online medical records are improving the quality of care across the board. But each of these steps forward adds some complexity to what is already the difficult process of diagnosing and treating problems in the human body. As this complexity grows, responsibilities are getting put onto the shoulders of the very patients the medical system is supposed to serve. These responsibilities are not made clear to those that bear them and when we fail to fulfill our end of these unspoken deals, bad things can happen.
Modernization is good. It would be foolish to argue anything to the contrary. But there are new risks that must be acknowledged and the diagnostic failings of the system haven’t been dealt with. There are toolkits that Dr. Graber and SIDM have developed to help patients navigate the fraught pathway to a good diagnosis. They are incredibly helpful and anyone dealing with a medical issue should utilize because ultimately it seems much of the burden is on us to make sure we get to a good outcome.
I have surgery scheduled for Tuesday, May 7th, 2019. Dr. Brook is going to go in through my nose with another set of noodle-like tools and open my sinuses that are pretty much swollen shut. As I write this, the surgery is one week away and almost three and a half years since I first realized I was sick. I bumbled my way through this process, making mistakes that cost me time and money and caused real harm to my life. I can’t wait to be back to my old self but I am trying not to get too excited, to keep my hopes in check. I have been wrong before. I hope this time is different.