Even doctors make mistakes
But the lessons we can take away from those errors can also change how we help other doctors practice better medicine. And change how we patients work with our doctors in the future to ensure we get the best possible care. It takes more than a doctor admitting to an error, or an apology. It takes hard thinking about what should have been done differently. It’s those lessons from doctors that can become so valuable.
1. Failing to take DETAILED histories
Too often first-year interns in large practices or academic ones (like the university medical center where I go) taking a medical history don’t know what to ask beyond printed questions, or they ask too many yes-no questions. Physicians all too often miss key information or skip over it in their rush to get through an appointment in the time allotted in the US-insurance-driven system.
My history and chart can be incredibly confusing. With 60+ active conditions being treated, it can be hard for any physician to tunnel through for the most important factors. To do so in the limited time allotted for the appointment may be impossible.
Lesson learned: Carefully taking detailed medical histories for complicated patients can help uncover patterns, misdiagnoses, possible erroneous treatments, and larger pictures. All of which can benefit both the patient and the physicians treating her or him. But the patient also needs to stay on top of her symptoms, diagnoses, test results, and issues. If only because doctors leave, go on maternity leave or vacation/sabbatical, retire and you need to start over again with a new one.
2. Accepting assumptions compounds errors
One example of just accepting assumptions is the severe diarrhea I had for more than 13 years. Ultimately it could be traced to two key factors:
1. Long-term use of proton-pump inhibitors (PPIs), which are supposed to be for more limited use only (something I only learned when it was too late to reverse the damage done). Instead, doctor after doctor (including prominent gastroenterologists) kept me on them for more than 20 years, instead of finding a better solution to my GERD. NOT ONE ever mentioned getting me off them, at most they merely switched me to a different one without comment.
2. All the antibiotics for my chronic sinus infections eventually caused the sinus bacteria to become resistant but also killed off my healthy intestinal flora. That, in turn, impaired my ability to absorb key nutrients like electrolytes and some key medication formulations. (There’s even evidence now that it might be why I developed chronic depression as a child, something I still have treated. How about that? The bugs in our guts may actually control the level of hormones produced throughout our body, determine when, where and how our body musters defenses against certain things, and even determine our food cravings and allergies and ultimately our ability to lose weight or maintain a healthy weight. Fascinating, isn’t it?)
Eventually, I was diagnosed with intestinal bacterial overgrowth and treated with two courses of a special antibiotic (rifaximin). Now I only occasionally have a problem, which rarely lasts more than 24-48 hours. But the damage done to my intestinal biome is considerable and permanent. The result is that now I have trouble absorbing key elements, like electrolytes, and some of my medications.
Lesson learned: All this might have been avoided or reduced if detailed histories had been taken over the years. And if doctors had thought critically about both the problem AND ANY ASSUMPTIONS!
3. Unlocking a patient’s reality
My best doctors see new patients with complex cases as the last patient of the day and schedule a full hour for the initial exam and history. They also ask for and review the chart BEFORE the first appointment. Some of them split the history-taking over several appointments.
Two top specialists even asked me to write up my key medical history before I came in, answering detailed questions for their specialties, but touching on other areas. For example, my first rheumatologist asked about my miscarriages 30+ years ago. I never would have thought to include anything about them now. But she explained miscarriages could be another indicator of certain autoimmune problems.
An allergist at Johns Hopkins in Baltimore I consulted about allergies to antibiotics asked me specifically about the impact asthma and severe allergies had on my childhood and life as an adult. No one had ever asked me that before, and it was surprisingly hard to answer unemotionally. He didn’t push me to answer quickly. He waited patiently and silently for me to gather my thoughts, even though the silence in the room drew out to what would normally be an uncomfortable pause. Even after listening to my halting comments and discussing certain aspects, he asked me to think about it and write down my thoughts and bring it to my next appointment.
Lesson learned: Consider scheduling new patients with complex cases as the last appointment of the day. Also, think about asking the patient to write a summary in their own words of their most important medical history and current problems. Recognize not everyone is comfortable speaking about very personal, intimate, possibly embarrassing things. Suggest they write down their thoughts, or discuss it with a spouse, child or friend to help them share their thoughts (and even bring that person to the next appointment, if it would help).
4. Lacking interest in the impact of illness
Ever tried to explain something vague to someone else? The only way I’ve ever found to do so effectively is to talk about the results. “The pain prevents me from sleeping at all for nights on end.” “My short-term memory suddenly is so bad I can no longer read anything because I can’t remember what was in the first sentence of the paragraph.”
But when a physician cuts you off or dismisses your attempts to explain how you know that your problems are worsening? That can be frustrating. It can also be frightening. You feel totally alone.
You question what you are experiencing. How you are handling the stress. Sometimes you even worry that you are somehow imagining the problems. In the meantime, the underlying illness is worsening, and other problems are not being diagnosed.
Lesson learned: The doctor should be asking questions to quantify problems at each appointment. Ask the patient to carry a small notebook and note every instance of a problem, or an example of a limitation or weakness, and review and discuss them at each appointment. My detailed notes over years proved to be vital clues eventually — for the right doctors. By documenting them over time, perhaps new problems can be uncovered. But at the least, the patient will know she or he is being heard, being respected. And that the doctor is placing some value on their explanation.
5. If the patient asks for information – GIVE IT!
When I was in the hospital for two weeks for treatment of status asthmaticus (potentially life-threatening asthma attacks that don’t respond to normal treatments and repeatedly worsen) in early 2013, I tried repeatedly to talk about the profound weakness later diagnosed as steroid myopathy. Each practice team or individual doctor would be asked for an explanation. They’d shrug it off as if I were being disagreeable. Or say something meant to be comforting, like “We’ll take care of that tomorrow.” Except no one did.
I had figured out for myself that the steroids likely were behind these strange side effects. My dear friend Heba, coming into town each day to be with me in the hospital, also had noticed that I would be capable of speaking more clearly, feeding myself, even walking better between her arrival around 7:30 and 8:30 am. Which was when the nurses would bring in my daily dose of IV steroids.
Almost immediately I would feel it moving through my body, and Heba would hear it in my speech. My voice would go from hoarse and badly strained but relatively normal, to a monotone when I would struggle to form a single, simple word or push it out. I could think something out logically, formulate what I wanted to say. But I could not make the sounds or push them out of my throat. I would be unable to hold my phone, a spoon, a cup of water, sit upright. The terrifying side effects would worsen throughout the day and evening, until late at night when the drug would begin wearing off and my abilities would slowly begin to return, albeit in a limited way.
Finally out of desperation, I refused one morning’s dose until a doctor came in to speak to me. We told him what we’d observed and the doctor said merely that it was a side effect caused by the high dosage, but the dosage was necessary. No real explanation, certainly no discussion of the ramifications of it all. And no discussion of how I would manage alone at home. Or what turned out to be the persistence, ultimately the permanence, of some of the side effects.
Lesson learned: If a patient is begging for information, GIVE IT TO HER! Denying there’s a problem, or brushing off her concerns or fears only creates more anxiety, and sets up greater potential problems getting assistance upon discharge.
6. Breaking bad news requires some kindness
Recently, I read an interesting article by Jonel Aleccia on KevinMD.com, Why so many doctors won’t break bad news to patients. It follows a physician with a terminal cancer diagnosis as he works to help fellow physicians learn to communicate better with their patients.
My case isn’t as dire as his, but the way I learned about my situation was similar. And just as painful. (Read more about how I finally got the first diagnosis from the then-chief rheumatologist after the hospital in Backstory #3 Medical whiplash.) I guarantee the doctor’s comments and behavior will give you a whole new understanding of the concept of “patient-centered wellness” and “bedside manner.”
Lesson learned: Come out from behind your desk, or pull up a chair so you are on the same level. Reach out and touch the patient’s hand or arm. You don’t need to say much beyond the facts. Just show a little kindness, some humanity. It means the world.
7. Before discharging a patient
Questions to ask a patient should include:
1. Is the patient prepared for what will be required for them to be home? Is the patient going to be alone? Can he or she safely take care of themselves, including get around, cook and eat, wash, clean up? How will he/she handle that?
2. How will he/she monitor symptoms? Prepare and take medications and treatments without confusion? Track readings and test results to monitor status? Obtain additional medications, if needed? Get to follow-up appointments?
3. If a patient lives alone, without family who can help, are there neighbors or friends who can? Are there social services that can step in, or volunteers? (Many social services require the physician’s office to certify need and make arrangements, and to do so before discharge from the hospital. Some may need to be done several days in advance.)
4. If there isn’t someone available, you might need to discuss temporarily placing them in a care facility until they are stronger and/or arrangements have been made for support services in the home. Will their insurance cover the costs?
Not a single similar question was ever asked of me, and the hospital discharge notes ignored all such aspects. It even omitted any discussion of home treatment of my ongoing asthma, except to say to discontinue all prednisone, which wasn’t possible since I was still having asthma.
Lesson learned: Determine what the patient’s needs and circumstances are at home – it’s as vital as the correct medication.
8. Failing to consider care needs at home
The discharging physician and GW Hospital came very close to triggering a catastrophe after those discharges.
In the hospital, every attempt to discuss how weak I was with the doctors or my ability to take the most basic care of myself when discharged had been ignored.
It was as if they thought a magic wand would be waved, I would leave the hospital, and enchanted mice and a fairy godmother would take care of absolutely everything I needed. (I’m afraid my fairy godmother must have failed the licensing exams.)
Steroid myopathy in the acute phase meant I had trouble walking more than 10 feet. I couldn’t wash myself and had to prop my arm up on the counter to brush my teeth with an electric toothbrush. Sitting was painful and very difficult. I needed EXTRAORDINARY assistance, not just some casual help. Doing grocery shopping, basic cooking, housekeeping, taking out trash, doing laundry. I didn’t have the financial resources to pay for help. Friends would try to help, but with demanding careers and families of their own, I felt guilty asking for anything more than occasional help. And after a while, I was too embarrassed for anyone to see how I was living.
Even as the myopathy transitions slowly into the chronic level, it takes so long to regain any strength. Or endurance. Taking a shower even while sitting on a shower chair can be so exhausting I have to nap for an hour or two afterward. It can take a month or more to once again be able to walk 60 feet, and still may need to be broken into stages with rests. Improvement comes in tiny sips, and the briefest new asthma attack would send me back down, below where I had started.
What about social services?
Over the next few years, I would ask repeatedly if there were programs that might be able to help me. Merely asking for help is humiliating if you have always been independent. But doing so, and then being dismissed – that’s devastating. I’ve needed help with everything from shopping for groceries and picking up prescriptions, to delivering healthy meals when I was too ill to cook.
(I spent months as recently as 2018 living on grilled cheese sandwiches three times a day because I could buy the bread and cheese at the store in my building and I could make them while sitting on a chair in my kitchen. All because I couldn’t get help from a doctor in applying for a local Meals on Wheels program.)
But my doctors seemed to know of nothing for which I might qualify. I was told Meals on Wheels was only for HIV/AIDS and cancer patients or the elderly. After several years of asking, I finally got the medical certification necessary for reduced fare mass transit, despite the fact that I had been dependent on a walker for four years by that time.
Finally in the fall of 2018, I was referred to an MFA internist who also specializes in nutrition, and she had me finally enrolled in a local version of Meals on Wheels, called Food & Friends. What I would have given for access to the program earlier in the year, much less from 2013-2017! (And what a difference it would have made to my diabetes.)
Lesson learned: Patients, especially of complex cases, often need social services as well as medical ones. Physicians should at least provide basic referral information so that patients know where to call for help and what might be available. Often physician statements are required as part of any application.
9. Electrolytes aren’t just for fancy water
Wouldn’t you think those blood tests doctors order routinely to monitor everything from your blood glucose levels to anemia would actually be acted on quickly by the doctors? That if one of the key electrolytes, like … oh, maybe magnesium, is repeatedly marked on the test as CRITICALLY LOW, that perhaps that was a problem that needs special attention? After all, if potassium or calcium, two other vital electrolytes, came back similarly marked, rapid action would be taken to bring them into the normal range.
Then, if the internists’ prescribed supplement dosage ended up making the hypomagnesemia worse, you’d think it would be high time to defer to an expert – a nephrologist (kidney doctor). That’s where the correct approach to resolve a difficult problem would be found.
Unfortunately, at least in my case, it took about a year of steadily worsening symptoms before I got to see a nephrologist. And it was simple luck, having the right one cross my path while I was in the ER.
The various internists didn’t pay much attention to the lab results, and they were evidently overlooked by all my specialists. Maybe they didn’t recognize how badly a critically low magnesium level might affect a body’s functioning in other areas. Magnesium is the critical mineral for more than 300 core functions in the body. No wonder I was having trouble with so many other problems!
Unintended consequences
The internists then prescribed a high dosage of magnesium supplements (400 mg, twice daily). Unfortunately, that actually made the problem worse, exacerbating my chronic diarrhea and lowering my medication and nutrient absorption. Unintended consequences not realized for months, but which increased the agony I was suffering.
It took repeated visits to the GW ER and despair (and pain) so great that I had planned my suicide for one November weekend in 2014. My last attempt at getting help before the suicide (for which I’d carefully researched and prepared) sent me to the ER for severe jerking. My arms and legs were thrashing so strongly they actually caused me to fall out of bed the night before.
In the ER, the jerking was so bad it ripped the IV out of my arm, requiring pressure bandages to stop the bleeding. They cushioned my arms and legs with blankets, but then had to tie them to the bed rails to keep me from hurting myself further.
Sometimes heroes arrive in small packages
By chance, or maybe a guardian angel, the perfect nephrologist, Dr. SL, happened to be in the ER that Saturday afternoon. She overheard the doctors discussing my case. Intrigued, she looked at my chart and test results, going back months to see results over time. Then she came in to tell me she knew what the problem was, and how we were going to fix it. It wouldn’t be quick, it wouldn’t be permanent – but it was a lifeline. And I grabbed it.
She proved it by having them give me a small amount of magnesium by IV. Virtually immediately the jerking stopped. The pain was still tremendous, and of course, I was bruised and sore everywhere. But the relief at having the jerking stop was indescribable.
They had to give me a small amount because too much at a time, as with the wrong dosage by the internists, would cause my system to “spill” the magnesium. Sort of like opening the taps fully, thinking there was plenty coming through, when in fact it couldn’t be absorbed fast enough.
Over the next months, Dr. L ended up teaching me an advanced course on magnesium and the human body. She taught me to build up the magnesium slowly, primarily through diet, with a maximum of 400 mgs of daily mag supplement, but carefully because of my absorption problems. (She says I’m her best student, and that I have earned an honorary medical degree from GW. I completely agree – but I’m not holding my breath.)
Lesson learned: Sometimes the simplest things can have outsized roles – if they are ignored long enough, and are important enough, to overall functioning.
10. I am the decider …
I have a thyroid gland that simply will not die. It was removed, except for a tiny bit around my vocal cords to protect them (which was common) in 1997. But then a few years ago, Dr. MT (my original MFA endo) felt what he was certain was the gland in a routine exam. We did a new sonogram, then new biopsies.
It not only had regrown – it had regrown symmetrically! Dr. T moved out of state, and the new endo wanted to wait/watch until it caused “enough problems” to warrant removal. With all my other medical issues, no one was eager for me to undergo more general anesthesia.
But over the next few months, more problems arose, and my other specialists were concerned. At each quarterly appointment, however, the new endo insisted there was no reason to remove it, despite all my other symptoms. No matter how much sicker I became overall.
With horrid timing, the new endo left town for a month and I went into a hyperthyroidic crisis. I had to be hospitalized because of dehydration and the return of the explosive diarrhea. It caused my diabetes to be completely out of control. When the endocrinologist returned to town, I insisted flatly that it had to come out since they were unable to manage it otherwise. He shrugged and offered no rationale for not removing it. The new surgeon swore every scrap was removed.
However it took a number of months to get some of my other systems back on track after so long on the hyperthyroidism roller-coaster. Only later did I learn about a dispute between one of my specialists and the endo. The specialist had worried that the regrown thyroid was periodically pumping out hormone, adding to the amount in my replacement hormone pills, causing me to seesaw from hypo- to hyper-thyroidic and back again. And that seesawing was affecting my other fragile health systems.
The endo, however, had challenged her knowledge and standing to even voice an opinion!
I was livid!
Not because they were two professionals with a disagreement (although his response to her was extremely unprofessional, in my opinion). But because the disagreement was over MY HEALTH and MY CARE and I WASN’T BEING INFORMED or CONSULTED! As long as I am of sound mind, I AM THE ONE who will make the decisions regarding my care, especially when there is a difference of opinion.
I’d learned my lesson with the internist responsible for the 18 months of prednisone in the ’90s.
This endo had ignored how sick I was all those months. He had refused to explain any of his reasoning for the delays to me, or to my other physicians. No, enough was enough. I asked to move to another endocrinologist in the practice, and am happy with his care.
Oh, and the kicker? The damn thyroid is growing back AGAIN!!
So far, it’s small and asymmetrical, but it’s there and being watched. Eventually it, too, probably will have to come out. Like I said, the thyroid that will not DIE! (And, yes, at times I do want to hunt down the second surgeon, who swore he left behind nothing that could possibly regrow. He owes me a free surgery.)
Lesson learned: Be clear with all your physicians that if there is a disagreement about treatment options you want to know about it. You want to hear all sides, get the best evidence and make up your own mind about what you want to do. It’s natural to lean for guidance on the doctor you trust the most, but it’s important to hear the differences of opinion. They strengthen your options, not weaken them.
So why didn’t I sue?
These are just the high-points (low-points?). I’ve been through enough in medicine to know that behind the curtain, there are no wizards, just flawed, usually caring, people. I didn’t consider suing for some fairly basic reasons:
1. When I was prescribed an average of 60 mgs of prednisone a day for 18 months (2000-01), it took so long to get a firm diagnosis on physical injuries that the statute of limitations on suing was up (three years here).
But I also bore some responsibility for not doing more to get a second opinion and safer treatment from another physician. I had a responsibility to know more about what I was putting into my body and the long-term impact of it. Just because a doctor prescribed it and it was the only medication possible didn’t mean I should be on such a high dosage for more than a tiny fraction of that time. I should have pushed back more forcefully.
2. Since 2013, I was fighting for my life – literally struggling to survive. To make it through each day. I didn’t have the emotional or physical reserves (or interest) to devote to suing anyone.
3. In the 2013 steroid case, the doctors had no alternative to the course they took to treat me. But things definitely should have been done differently. The doctors SHOULD HAVE COME IN AND DISCUSSED STEROID SIDE EFFECTS AND PERMANENT DAMAGE WITH ME! At least give me a heads up. Not ignored me when I struggled to discuss it, as I worried about how I would cope on my own.
Despite it all, the doctors and all the rest of the MFA team were desperate to save me. I wasn’t going to sue them when they were just trying to save my life.
Next Managing Asthma’s The “Two-Minute Rule” or Coping with a whiny, sick child and Learning to manage asthma – as a child or an adult.
