You have to be your own doctor. A phrase we have all likely heard at one time or another, until recently I thought it simply meant you need to pay attention to your own symptoms and what your body is doing and ask for a medical opinion when you know things are out of whack. I didn’t think it meant you need to literally be your own doctor. Apparently, I was wrong.
Apparently you need to be able to interpret lab results, read radiology reports, understand what you are looking at in said imaging, know all the possible side effects of everything you consume daily, and have a solid working knowledge of disorders and diseases that might pop up due to the things you know you are managing. Otherwise, you’re wandering through chronic disease unarmed, naked, exposed to all the possible dangers. Because your medical team is barely doing the job.
In my last post The High Cost of Insurance Scripted Medicine I dug into the failure to use the tools we have to solve medical mysteries. Obviously one reason to pick up that doctor hat ourselves. When confronted with what happens once testing Is complete, it becomes even clearer that the more you know, the better off you will be. What is and is not shared, when and by whom, varies a great deal from doctor to doctor. Some will go through images or blood results bit by bit, explaining what they see and why. More the norm is the doctor who presents the test results in broad strokes, not discussing the numbers but what they believe they mean. Ignoring all information not related to the question at hand.
Over the past three years that kind of medical practice has cropped up for me again and again. Being curious and science minded, I have looked at many of those reports and test results myself over the years. And I am here to tell you, sometimes what they don’t bother to tell you, could kill you. Most recently they were not telling me about low potassium, continuously low for months now, as shown by monthly blood tests ordered by my specialist. I became aware of the issue two months ago, when I looked at my metabolic panel results. My rheumatologist made me aware of it yesterday, when he asked if anyone was treating it and informed me that my heart could stop if it is not corrected. Thank you ever so much for the belated concern doc, but as the physician who orders and hypothetically monitors my monthly blood work, who did you expect to inform me and treat the issue? Perhaps more important, what else would you not feel you were supposed to tell me about if it cropped up? Kidney and liver failure? Signs of cancer or infection? Any of the other things I thought you ordered labs to check for each month? Clearly, I need to do a better job as my own rheumatologist, he doesn’t appear to have the time.
As an isolated incident such a story is no big deal really, doctors are people, they slip up, they miss things, they are, indeed, only human. Unfortunately that is far from an isolated incident, it isn’t even the only oversight he brought up at my appointment yesterday (he also was unsure if I’d been tested for something that would make my medication potentially deadly, excellent work sir, I’ll be sure to give you a great rating, not), it is simply the most recent in a string of doctors failing to inform me of what they were seeing. Information that, again and again, would have improved my health and quality of life. Information they saw and knew how to interpret. And I am not alone. People suffer due to medical oversights every day. Some of them even die. A 2016 Johns Hopkins study suggested as many as 10% of annual deaths are due to medical error. (Hopkins) That is an estimated 250,000 deaths a year.
If 10% of deaths are due to medical error, imagine how many patients survived mistakes in a given year, one would hope that would be a much higher number, but lets imagine for a moment, that ½ of medical mistakes are survivable, that would still be 500,000 people a year dealing with medical errors and the fallout from those mistakes. In our modern medical system, with well-educated professionals, endless checks and balances and medicine that is practically scripted, those numbers sound much too high. SO what in the world is happening here? Why are mistakes so common and deadly? More importantly, how can we avoid them?
The first, most likely culprit of medical error is time. If you’ve been to any sort of doctor visit this decade you have probably noticed that time is precious. The average appointment time for a patient visit is 15 minutes. That is 15 minutes in which doctor and patient are expected to cover all health concerns, treatment plans, go over medications, review test results, and decide how to proceed. Plenty of time if you are healthy, not much time at all if you are dealing with health issues with multiple aspects to cover. Appointments become a race against the ticking clock, if you don’t have questions written down, chances are you’ll be gone before you think to ask. And it is not possible to tell your physician everything in that time, so you hit the highlights and hope that is enough.
15 minutes may be enough for a coffee break, but it is not long enough to see the entire patient. Not time to consider all the different issues a patient might have. Not enough time to mention anything test results may have shown that the patient didn’t expressly ask about. The more hurried the environment, the less answers you will get. Visit an ER? You will learn only about exactly the issue you came in for. The imaging may show a massive ovarian cyst, but you are here for kidney pain, so only the stone they saw will be mentioned. This is where being your own doctor can be handy, I’ve learned a lot by looking at those radiology reports and labs later myself.
The second issue is one that precedes the fifteen minute appointment model. Doctors are rarely looking at the entire patient. When you enter their office, you are there to solve a problem, for better or worse, they will be focused on the symptoms and testing that relate to what we are seeing right now. Rarely will they have the chance to look through your patient history to put together pieces to this puzzle they have already uncovered. It is going to fall to you to drag those pieces out when you think they might fit.
At the end of the day, they are not in your body, don’t know all it has been through and all that it feels, and definitely don’t have time for a guided tour lead by your medical record. It’s going to fall to you to guide them to the information about you they need to see. If you know nothing about the kinds of things you may be dealing with, it can be really hard to know what to bring up. Once again, having some working knowledge of medicine and your conditions could pay off.
While having the time and money to pursue an actual medical degree is probably not in the cards for you, learning a bit about biology and all that you can about any conditions you are diagnosed with can help you be a better patient. Doctors may not always appreciate the way you cite the things you’ve learned on Google, and that is okay. You are not in their office to please them, you are there to get the answers you need to know about your own health. Remember, you may not be a medical expert, but you are the sole expert on your own body.