Medical Bullies

I woke up today and I couldn't walk. It made me realize something. I'm being bullied. Despite my current apparent kidney health, I am not wrong that there's a fatigue issue going on, one that is clinical in nature. And I was never wrong about my symptoms that led to the diagnosis of Autoimmune Hypophysitis. What I'm experiencing here is a form of gas-lighting. They're telling me, "Yes, the results are abnormal, but we think the cause is the medication, not a disease..." Really? You think I was perfectly healthy, went on a medication, and now I'm sick as a result? Hold on here, that makes no sense.

I was first diagnosed by a Cardiologist in California who was looking for the exact *opposite* result in my bloodwork, because we were looking for causes of tachycardia. That was reaffirmed by an Endocrinologist who DID NOT believe I had what the Cardiologist found. My adrenal glands shut down in the presence of the stimulating hormone. I wasn't just low, my Adrenal Glands responded in a way that they should not. Additionally, he also didn't think my pituitary was involved, but agreed to test it because, and I quote, "I was wrong the first time!!"

I remember at first, I didn't want to be on prednisone, and voluntarily took myself off it for a month, but my endocrinologist showed the labs to me. She said you need to be on prednisone in no uncertain terms, and if not, you're risking your life. This was after all nerve blocks to try and control my migraines had ended, when I was receiving care in Everett Washington, before I had any pain relief from the headache clinic.

It was reaffirmed in Seattle again when I moved south and picked up a new Endocrinologist. There was a time under her care when I knew I was over-medicated, too, and again, voluntarily came off my prednisone. This time, however, the labs came back normal. It was then that we scheduled me for the neuroendocrinologist, or what I like to call a specialist to the third power (or specialist³) because you have to go through two layers of doctors to reach this guy. We knew that there was really only two reasons for hypopituitarism to go away: 1 - childbirth (and I've never been pregnant, even when trying - a clue itself) and 2 - autoimmune.

We had an MRI taken in this time, right as I began to get symptomatic again: I was nearly fainting after standing and just taking a few steps. This was a harsher version of when I first showed symptoms, when I was nealy blacking out from climbing two sets of stairs. Stair-master exercise machines were the worst. Just a few seconds on the machine, and my vision would tunnel, colorful or black & white spots would appear in my vision, and my whole body would start to go limp. This time, just three steps would bring me to my knees. The MRI came back "dirty" --- there was clear indication of lymphocytic invasion of both my pituitary gland and stalk. We finally had our smoking gun.

Why these people don't want to believe me now is baffling, but I need to stand my ground. I see my new GP next week, and hopefully she'll take over prescribing my prednisone, because my old GP refuses. How they can look at an abnormal result and prior evidence as to the cause of these abnormal results and say, "Nah, you can come off all your medication and you'll be fine!" is criminal to me. To threaten my life in that way boggles my mind.

I had reduced my medication the past few days to see if I could go off long enough to be able to have the tests show this again, but when I woke up this morning and my left leg didn't work, I decided against this course of action. It was the strangest thing. It wasn't "pins and needles" as you would feel if you'd lost circulation that way. No, there was just no feeling, and if I tried to put weight on it, I just fell. It collapsed underneath me. It was the most terrifying experience I've had to date.

I need to be at my medically best when I see this new GP. I have a new symptom which warrants extreme concern. I am not a happy camper at all. I am not well, but we can figure this out and manage it. However, I need physicians who are on my side and helping me search for answers, rather than denying the reality that is in front of them and placing obstacles in my way!

Since it's not kidneys, there should be something we can do to manage the fatigue. Since I'm experiencing new debilitating symptoms, we need to look at what else is going on in my body.

HEAVENS WORK WITH ME, PLEASE!

All I want to do is be a constructive member of society. Is that too much* to ask?

*Yes, quite possibly.

These medical bullies need to get gone.

The Curse of a Bad Doctor

This is a horror story too many of us know all too well: a bad opinion of some doctor gets in your record, and the ghost of that awful experience haunts you throughout your medical quest, poisoning the options of others before giving you a chance. It's happened to me more than once, and it can ruin entire health networks for you. It's happening to me again, as the notes from the doctor who though she could diagnose me through looking get forwarded on to the new endocrinologist I'm trying to see. I was called to be told that they had no reason to see me, even though the labs contradict everything she states in her letters!! But who cares? She's the head of neuroendocrinology for the state, so who's going to take my word over hers?

So I'm going to have my MRI sent from Seattle, the same MRI that got me in to see the quack (but mysteriously that keeps getting left out of the pile of evidence), and see if he'll take me after that. But even if he does, that doesn't mean he won't have an attitude when I finally do get in to see him... Doctors are funny like that. They don't like it when patients push back, regardless of whether or not it was the right thing to do. All I can do is hope he sees reason, but that too seems in short supply among doctors. If the original doctor I'd gone to see had been reasonable, I wouldn't be in this mess. I mean, really... Who gets lab results that disprove the theory, only to have the theory upheld and the evidence discarded? Isn't that what they teach people NOT to do in the sciences?

She claims my original cortisol stim test was "mildly abnormal" which is dead wrong. My original diagnosing doctor was surprised I wasn't in a coma! She claims that medication changes were based on my "feelings" and never mentions all the labs that supported those "feelings." She claims I've been on prednisone since my original diagnosis, but I was off all medication for 8 months while my disease was in in remission. She claims no worsening vision or diplopia (I have both). She says I dont' have cold or heat intolerance (I have both). She claimed no tingling, burning or numbness (I have all three and I'm on serious medication for all three). She claims I have no muscle weakness or easy bruising, when I told her of both. And she claims I have "emotional lability" (a nice way of saying neurotic) all because I got a little choked up telling her about 10 years of chronic pain... as if I was supposed to be stoic through the whole thing.

And now I can't get a doctor to give me an appointment because of all her lies. What ever happened to "do no harm"??? How on earth do a fix a medical record that's full of LIES?!?

SO ANGRY!!

Stocking Full of Coal

Many of you know, I suffer from a rare pituitary disease, for which there are less than 500 people with the disease. This is why I call myself a Medical Unicorn. When I got the diagnosis, I figured that my disease was so rare, there was no possibility that there would be a cure. There just aren't enough of us for it to make a difference to even try to find a cure. There's certainly no money in it. But then, it happened! They stumbled upon a cure, in the process of trying to fix something else in a patient. I've been trying for the last year and a half to get that cure.

My chase for the cure started with me moving to the Denver area. Doctors who study the pituitary gland are called neuroendocrinologists, and there aren't many of them in the country. There was one when I lived in Seattle, and they were the ones who originally confirmed my diagnosis. But Seattle is way too expensive a town to live in, and after my ex-husband suddenly cut off my court-ordered spousal support, I had to move back home to St. Louis. However, I quickly discovered there wasn't a neuroendocrinologist for a 5-state area. I was shocked. I was sure there would be one at Washington University, but no. So after exhausting everything I could do in St. Louis, and with the help of mt father, I moved.

It was a struggle getting an appointment with the neuroendocrinologist in Denver. At first they told me they wouldn't let me in because the University Hospital, with which she was affiliated, wasn't taking any more Medicare patients. I had my old neuroendocrinologist in Seattle fax over my MRI that showed the inflammation of my pituitary gland. That got me in.

But then, the neuroendocrinologist here took one look at me and decided that all my doctors of the past 10 years were quacks, that they had misdiagnosed me, and that all I needed to do was to come off my medication and I would be fine. She said that my thyroid problem was caused by another autoimmune disease, and it would show up on her tests. Well, it didn't. All my test came back proving her wrong. But did she change her stance? No. She still insisted I could come off all my meds and would be fine. She never said what was causing my thyroid to not work, since I came back negative on all other autoimmune disorders.

I tried switching to another neuroendocrinologist, a resident in training. However, since their scores are dependent on the exact person who dismissed me... Yeah, I didn't get any further except to keep having them spin their lies at me. At one point, I got the resident to break down and admit that they weren't going to do anything for me. I was devastated. I had the disease, I had the cure, but I couldn't get access to it.

Then, a miracle occurred. I couldn't have wished for better. My endocrinologist, the woman who had diagnosed me, and had send me to the neuroendocrinologists, was herself promoted to that very same position!! Gods be praised, I was overjoyed. I wouldn't have to prove anything to her, she was there! She was there when my disease went into remission, and I was able to come off all my meds, and she was there when it came back. It was a homecoming.

I couldn't afford the trip on my own. So I held a fundraiser, and my friends and family came out in support. I was able to make the trip to Seattle and reconnect with my old doctor. She hadn't heard of the cure, but she was able to look up who was involved in the study, to try and get the correct dosage and protocol I would need to go through to cure me. We waited for an answer.

And waited.

And waited.

I called her office today to see if we'd had any luck. Only when I get the pre-recorded greeting, it tells me that my doctor is no longer in practice!! I got no letter, no warning. Nothing. Like a stocking full of coal on Christmas morning, I'm beyond grief. I have no idea where to turn now. I can't afford another trip to Seattle. Her replacement will be a stranger who also may not believe me. Doctors don't believe in medical unicorns.

There's a cure, and I* can't get it.

She left her practice, and didn't tell me.

Who do I turn to now? Where do I go? What do I do?

How do I get what I need?

F.M.L.



[Edited to add:]
* I should actually say WE can't get to the cure. I know of two others (Hi Jana & Cathrine!) who share my disease and who's doctors are looking to me and my results before trying it on their patients. I'm leading a charge here, and I feel like the wind has been knocked out of our sails.

Please, if you have any insights... share them. Pass the word along. THIS CANNOT END HERE!!

[Edited to update:]
Never mind!! I found A Diamond in the Coal!!!

#NMAM "Run, Forrest, Run!!!"

Describe the approach you think is best when it's time to move on to a new doctor. The following are times you should leave. 1) When they don't return your phone calls. 2) When you have to do their office work for them. 4) When they diagnose by just looking at you. 4) When they give diagnostic orders opposite of the what test result are. 5) If they accuse you of behavior you know you're not doing. 6) If they refuse to run a simple blood test.* 7) When they lie to you. 8) If they don't stop when you tell them that what they're doing to you hurts. Yes, these are all personal experiences.

I was told that I was drug seeking... for prednisone (laughable in itself). I was told, "Nobody can be that sick!" by the doctor who has been my family's doctor for generations, and knew me before birth. I was told not to make a follow-up appointment on several occasions, with the line, "I'm sorry, we have nothing left for you..." Which really means, "I'm sorry, we have nothing left we're willing to give you..."

*I had a doctor who refused to run a cortisol test on me. If he had done that, I wouldn't have nearly died from an adrenal crisis. And I would have been diagnosed, and put on treatment 3 years earlier. I would have gone through 3 years less of suffering and struggle. I wouldn't have reached any of my miracle cures sooner, but I would have had to endure less in the meantime. Hell, they probably could have made me functional enough to keep working, but because of the combined arrogance and the War on Drugs (read: War on Patients), I ended up disabled and on government assistance.

However, my caveat to number 6 is, don't just go in there and order blood tests every week. That looks like a villain that doctors are told to ignore: "Googleitis: I read it on the internet, so I must have it." If you think you have something, don't go in there with a print out and say, "I have all these symptoms." Not unless you absolutely know you can trust your doctor to believe you. Instead, if you think you have something, first tell your doctor the story of what your day is like. Describe what going through the symptoms is like and how it impacts you. Then you might say something like: "Now, I was doing some research out of curiosity, and I came across this diagnosis that seemed to match. What do you think?"

I've written number 9 before. It's a tough topic, so I don't mind putting it out there more than once. It helps with my healing. With one doctor (a surgeon, go figure...), they almost needed a pair of pliers, he had driven the needle so far into my skull. He assume I was lying to him when I told him it hurt. He'd aimed wrong. He had a live Xray on (not just a snapshot, but a here's-what-you're-doing-right-now-Xray machine), but he misjudged anyway. The needle was supposed to go along the top of my skull, without touching the very sensitive tissue that lines it. He took that needle and drove it into that tender area, and drove so hard, that they almost needed a pair of pliers to get the needle out of my skull.

This doctor was so arrogant, he didn't believe is own senses! He had to push to drive it in. That's no small matter, putting steel into bone. He managed it. He ignored the resistance he was meeting. He ignored what I was telling him. I screamed so loudly, they heard me 3 floors down. That was also the surgeon, under whose care I didn't receive enough anesthesia, and woke up, post surgery, but still on the operating table. I woke up because my chin was burning. My chin was burning because they had infected me with MRSA. The MRSA that almost killed me multiple times. Unfortunately, he was the surgeon assigned to the study, so I had no other choice.

How do you fire a doctor? Just don't make a follow-up appointment. It's that easy. What's not so easy is explaining to your Primary Care Provider (PCP) why you needed to fire that doctor. In my experience, if you can give your PCP any of the reasons listed above, you'll find your provider will agree, "Run, Forrest, run!!!"

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Rx for Doctors...

I know I've spoken a bit here on medical arrogance, medical narcissism, and its negative consequences. I don't do it to call out doctors, so much as to say, "Hey, we already know this is going on... Why not just admit it?" But here is a video, a TED talk, that I think puts it best... a must watch for all in medical care, patietns, and their caregivers. Brian Goldman: Doctors make mistakes. Can we talk about that?

1 in 100

Doctors, we need to have a serious talk. This is a story from back before I was a patient, when I worked security at Barnes Hospital (BJC). They had just put in one of those new card-swipe key-systems, so all the doctors had to get new IDs. I was part of the security team that would ask the doctors to come in, pose for their picture, verify some basic information, and then give them their new ID badge. We would run folks through in batches of one hundred, because that's how many cards the machine could process at once. And I know this is purely anecdotal, but only one in one hundred doctors was actually nice to me.

Now, I hear the legions of the AMA screaming in protest, "But we have to be that arrogant to do our highly dangerous jobs. You have to have that arrogance, that confidence, to deal with things like cutting on the human body! It's only appropriate that doctors be arrogant!" But let me offer an example of men and women who have much more difficult jobs, and do it with a humility that is amazing.

You know that the deadliest job, even more deadly than military service, is that of the fishermen in the Bearing Straight. They have the show Deadliest Catch. But even more amazing than their job, is the job of the U.S. Coast Guard. These are the men and women who fly into the storm to rescue the fishermen in distress. These are the saviors of the people who do one of the most dangerous jobs in the world. Think you've got it bad at your job? Try doing it in gale force winds and sub-freezing temperatures.

Commercial fishing has long been considered one of the most dangerous jobs in America. In 2006, the Bureau of Labor Statistics ranked commercial fishing as the job occupation with the highest fatality rate with 141.7 per 100,000, almost 75% higher than the fatality rate of pilots, flight engineers, and loggers, the next most hazardous occupations.[8] However, Alaskan king crab fishing is considered even more dangerous than the average commercial fishing job, due to the conditions of the Bering Sea during the seasons they fish for crab. According to the pilot episode, the death rate during the main crab seasons averages out to nearly one fisherman per week, while the injury rate for crews on most crab boats in the fleet is nearly 100% due to the severe weather conditions (frigid gales, rogue waves, ice formations on and around the boat) and the danger of working with such heavy machinery on a constantly rolling boat deck. Alaskan king crab fishing reported over 300 fatalities per 100,000 as of 2005,[9] with over 80% of those deaths caused by drowning or hypothermia.[10] (Wikipedia - Deadliest Catch - Dangers of commercial fishing)

There is one group of medical professionals I will tip my hat to, and that is combat medical services. I had a favorite RN at the University of Washington ER. He was a Navy Combat Medic, and he could remain calm no matter how many top level traumas he was dealing with. I asked him once what his secret was. He replied, slightly stunned by my show of ignorance: "Nobody is shooting at me." That put things into perspective.

Only one in one hundred was nice to me. Ninety-nine though that their degree (and this was especially bad among new graduates) entitled them in some way to think themselves better than basic human kindness. There is something very wrong with that being the attitude of someone who is supposed to minister to the sick and weak. You're asking someone whom you've trained to be arrogant to then turn around and be sympathetic. The two are enemies! And we wonder why patients are complaining... It is really any surprise?

Why patience is a virtue...

[Part 3 of a trilogy, Part 1, Part 2]

There's a great greeting card flowing around the internet. Here's a censored version of it. Most people would look at this and laugh for the obvious reason. Everyone understands that we hate waiting. Places to go! Things to do! People to meet! My time is important! Yes, yes. Ha, ha. But hold on a second. When we rush things, is it actually easier for us to be successful? Does going faster actually cause less accidents? Are we able to see things clearly when we only see the briefly? Do we type things out correctly the first time, every time?

You may know this joke: A man is drunk. He's heading towards his car and accidentally drops his keys. So he starts looking for them... a block away under the streetlamp. A stranger, seeing all this asks the man, "Why aren't you searching for your keys where you dropped them?" The drunk answered, "Because the light's better over here..."

It does us no good to always be right. It does no good to surround ourselves only with the safety and security of what is known. We want to repeat our successes and avoid our failures. That's primal too. And it's scary to go into the darkness. It's scary to be unsure. Our autonomic nervous system actually goes into fight or flee mode. We're primed for action, but unable to take any because we don't know what to do. That's a tough spot to be in.

We need patience because success is not a straight line. The path from a to b is unknown. We may have a direction, but we have no idea of what life is going to throw in our way. We may have a goal, but we may have no actual way of getting there. We may have a map, but that's no guarantee the landscape is going to match. And acknowledging those facts, embracing our insecurity, and giving ourselves the time to be cautious are all important.

And we're not training our kids to learn how to have a willingness to be wrong. We're teaching them that there's right and wrong and you always want to be on the side of right. We've associated being right with righteousness. The person who is right should be given the authority. They know what to do. They're right.

This time.

But, as I've mentioned before, success isn't a straight line, and success isn't a destination either. It's not like you become successful and stay successful, never making another mistake again for the rest of your life. We can't hold on to success any more than we can always be right. And yet, these are the expectations and heroes that we parade around. These are the stories of rags to riches that we eat up with a spoon. S/He made it to the top and lived happily ever after. On the flip side, we have the shaming "s/he never really amounted to anything..." and "s/he never really did much with their lives...." We put such enormous pressure on ourselves, and we can be so mean to ourselves when we fall short.

I say let's put away the abuse and self-abuse and let ourselves be okay with our not-knowings. It's okay to be unsure. It's okay to be cautious. It's okay to dip your foot in to see if the bath water is too hot. It's okay to have to take time to figure things out. It's okay to need time to figure things out. In that time, it is appropriate to feel insecure. That is a perfectly reasonable response to not knowing something. It's not bad to realize our own limitations. To be limited is to be human. We give a patience to ourselves and others as an act of acceptance and forgiveness of our limits.

Edited by Brigg Badlwin

No such thing as a human machine...

[Part 2 of a trilogy, Part 1, Part 3]

We're trained very early on that to be wrong is to be bad, that we made a mistake, when we saw reality wrong, it's because there is something wrong with us. Getting the "right" answer and being able to show how you got the right answer is all important from the time we start school to well after we retire. But the truth is, no one knows what reality is. We're all observing this world with fallible human organs. We want to get things right so badly. We remember our mistakes so easily. This is a primal instinct. Figuring this stuff out is how we survive.

When a situation is new, we can feel overwhelmed. We can feel out of our depth. And we are so rushed in this culture that we never give ourselves time to acclimate. We want to jump into a situation and fix it now! But we're not giving ourselves time to learn what we're working with. We're so enthusiastic to show that we can do it, that we don't pay attention to what's going on around us. We're going so fast in our efforts to be wonderful, that we make simple, catastrophic mistakes. Our history is saturated with this behavior: Katrina, Afghanistan, Iraq (just to name a recent few).

I am insecure about my health problems. They're rare, they're difficult to manage, and they're interfering with my life in a major way. That's scary stuff. It's perfectly reasonable for my doctors to feel insecure too. But they have a culture wherein they always have to get the right answer or it's their @$$ on the line. The stakes are REALLY high for them. They have to have an answer, it has to be the correct one, and it has to make the patient better. When that doesn't happen, they freak out. They're out of their comfort zone of rightness. They "ran into the table" and the first person they're going to "scream" at is the patient. If the patient would just go away, the problem would go away. They never would have to face being wrong.

What a perfectly, self-sabotaging way to approach medicine. In this modern day of machine and perfectly pressed pills with the same microscopic amount... with all our amazing diagnostic technology that can see into the human body in ways we've never imagined... we've forgotten that medicine is an ART. With all these health programs and websites based on wellness, we've forgotten that people aren't one-size-fits-all. As a culture we've forgotten that what's good for your life may be bad for mine, and please mind your own business. We've place this expectation that because we have precision industry, because we have this diagnostic technology, because we've had all this very expensive education, that that somehow makes us immune to mistakes and immune to insecurity about the situation. Why?

Insecurity is okay. It doesn't mean there's anything wrong with us. It means we're in a place of learning. We need not view it as failure: to not know. We need not be afraid of this. That's where discovery lives. That's where wonder and surprise are. We need to not be so concerned with making reality match what's in our mind, and need to concentrate more on matching what's in our mind with reality. That takes humility. That takes vulnerability. That takes a willingness to be wrong. That take willingness to admit: there's no such thing as a human machine.

Edited by Brigg Baldwin

Sometimes insecure is a perfectly valid way to feel...

[Part 1 of a trilogy, Part 2, Part 3]

We don't like insecurity in this culture. It's a sign of not knowing. And if you don't know, well, how can you tell if you're wrong or right? How do you know what's correct and what's a mistake? How do you know what to think about yourself? Are your efforts good enough? Are you measuring up to the moment? What's the East German judge going to say?!?* Do I have any idea what's going on? Am I even seeing reality?

Have you ever seen a toddler run, without watching where they're going? Invariably they smack their head into some piece of furniture. Then they look at you as if to say, "If only you hadn't been there watching, I wouldn't have hit my head!!!" They are so angry in their pain, so angry that it hurts, so angry that it disrupted the fun they were having just instants ago...

We are all still that toddler inside. When we get sick, when our lives get disrupted by something we did not want, have no power over (besides mitigating the consequences, that is), when it hurts, we get angry. DO. NOT. WANT. It makes us mad that we have to deal with it. We want to escape it. We want a reason why. We can easily fall into blame-the-victim, both towards ourselves and towards each other.

But the truth is, just like that toddler, we can't see it coming. The future is something we anticipate, not something we know. Our incredible capacity to imagine is how we compensate for the fact that we're never really living in the moment. It's actually biologically impossible to live in the moment. It takes "it takes the brain at least a tenth of a second to model visual information." That is, it takes 1/10^th of a second for the reality in front of us to reach the vision center of our brain and tell us what we're looking at. Think about this: you're driving in your car, the world is moving around you, things are happening, and you're watching the road. You look away. You look back. Suddenly you have to slam on your brakes. Did you miss seeing the car in front of you? Yes, quite possibly. That could be entirely true. If the movement happens in that 1/10^th of a second window...

Let's think about that in terms of baseball. "At 85mph, it takes a ball approximately .425 seconds to go from the pitcher’s hand to the hitting zone." That's approximately 4/10^th of a second.

More math, the average human reaction time is 3/4 of a second. That’s .750 seconds [7.5/10^ths of a second]. What does that mean if a player simply reacts to the ball from the time it is released? That’s right, if you are good at math, you figured it out. Go have a seat on the bench, strike three went right on by you before you could even swing. Hitting is timing. A batter must begin his swing at the same time the pitcher begins his motion. There is an old saying, and I am not sure which hitting instructor first said it, "When the pitcher shows you his pocket, you show him yours." In other words, when the pitcher kicks his front leg up to begin his delivery to the plate, the hitter should begin his "cocking" or "pre-swing" motion, preparing the bat for a swing at the ball. If he does not, it is physically impossible to react in time.
Be a Better Hitter

We anticipate the world. All the time. For survival. For sport. But sometimes, when our mind is calculating what that future is going to be, we get it wrong. We don't see the table. We strike out. Something happens that we had no intention of happening. We don't get that job. We don't get into our choice of school. We can't afford to live in that neighborhood anymore. We're sick with a disabling disease. Life happens and throws us off our game.

If we're aware we don't have enough information about how to calculate what the future is going to be, we become anxious, worried, and frantic. Where do I stand? What do I do now? What's going to happen to me? My family? My love... Those can be difficult pills to swallow. But it can also give us a sense of wonder, surprise and magic, like not knowing the end of the story or watching a Penn & Teller magic show:



Why do we run from our insecurity? Shouldn't we acknowledge it? Shouldn't we stop for a moment and go, "Hey, I'm feeling insecure. I wonder what's going on here?". Why do we try to insist, "I'm okay! I'm okay! Everything's alright!" even though we're scared? Why don't we stop and identify what's making us insecure? Insecurity lets us know that we don't have all the information we'd like. It identifies places that we should investigate, rather than avoid. It lets us know where the mystery lies.

*(Cold War Olympics humor)
Edited by Brigg Baldwin

Better care comes through humility

This is one of the most frightening statements from a doctor I've ever heard: "If we weren't this arrogant, we couldn't do our job." That is just baffling to me. When have you ever heard, "humility goes before the fall..."? That's just not how it works. I understand that what doctors do is scary and taxing. It's difficult to know where to draw emotional boundaries. The landscape is fraught with danger and certain risks must be taken. That takes courage, true. But courage can be present with humility. There doesn't need to be the god-like attitude of "I know...." It's arrogance that doesn't let us see mistakes, even as we're making them. Arrogance doesn't listen. Arrogance instructs: "Who are you to tell me that I'm wrong?" But I've never known any degree, any amount of schooling to make a person immune from making mistakes. That just doesn't happen. Even a doctor can misplace their house keys.

Doctors are said to be some of the worst patients, and it's largely to do with that arrogance. As one doctor put it: "I didn’t tell the doctors all of my symptoms and the events surrounding them. Without even thinking about it, I only told them what I thought was relevant. In fact, a common mistake we doctors make is getting too attached to the first diagnosis we think of, and then failing to ask about other symptoms, other clues.” (Doctor's 'Worst Ever' Headache, and Learning the Patient Story) He was lucky in that they were able to reach the right diagnosis anyway, but how quickly could they have been thrown off track? "You know, most doctors are taught that if a patient says "the worst headache of my life," then it's a subarachnoid hemorrhage until proven otherwise. That means a bleed in the brain, usually caused by a ruptured aneurysm. But I knew something like that couldn't happen to me. And anyway, while I suppose technically this could be the worst headache of my life, it really wasn't that bad. I mean, technically everyone has had the worst headache of their life, right?" This doctor's "knowing" could have cost him his life.

Another doctor describes her experience in missing her son's farsightedness: "It’s really easy to get sure of yourself as a doctor, especially when you’ve been doing it for a while—and especially when you have lots of patients to see. It’s easy to say: I know this. I’ve seen this before; I know what to do. Been there, done that. Usually, it works out. But sometimes, it can make us miss things we should see. ...We tend to think of humility as an optional virtue. Humble people are admirable and all that, but we think of humility as something that can get in the way of excellence and achievement." (It’s only through humility that we can achieve great things) But that couldn't be farther from the truth. It's only when we believe that we don't know everything that we are willing to investigate. In her arrogance over the situation, she even started to think her son was acting badly on purpose instead of inquiring about a possible cause.

Arrogance places an immediate wall in doctor-patient communication. "Most patients still believe that physicians still provide what the ethics of medicine requires us to: “consideration, compassion and benevolence for our patients”. They come to the doctor with the expectation that they will get to tell their story and be heard. That they will enter into a discussion with their doctor about the risks and benefits of certain tests, therapies and alternatives. That their physician will help them, as a patient, make their own best decision for themselves and be comfortable making that decision. ...Unfortunately the healthcare experience for many is quite the opposite. The doctor gives a patient an order that is expected to be followed. Patients that don’t follow these orders are branded “non-compliant” and often excused from the practice." (Find a physician, not a general) Instead of cooperating with the patient and working to find better solutions that work for both parties, it becomes a lose-lose situation for everyone.

The power lies with doctors. "Conventional wisdom [says] that the key to fixing health care begins and ends with changing patient behavior. If only we could get patients to be more compliant, if only patients would do what I tell them, blah, blah, blah. ...If you were to believe the admonitions of the NIH, AHRQ, hospitals, pharma and every WebMD-look alike, you would think that patients these days would be more involved in their visit... asking questions, sharing information and making decisions. But as most physicians will attest... most patients don’t have much to say in the exam room anyway. And the longer they have to wait before being seen, the less patients are likely to bring up the few questions they wanted to ask. This is a huge problem." (The Fastest Way To Disempower, De-Activate, and Disengage Any Patient)

Allowing arrogance allows a culture of abuse to exist. "A nurse I know, attempting to clarify an order, was told, “When you have ‘M.D.’ after your name, then you can talk to me.” A doctor dismissed another’s complaint by simply saying, “I’m important.”" (http://www.nytimes.com/2011/05/08/opinion/08Brown.html?_r=1) Far more than just inappropriate behavior in the workplace, this arrogance has real impact on patients' well-being. "Recent studies suggest that such behavior contributes to medical mistakes, preventable complications and even death. "It is the health care equivalent of road rage," said Peter Angood, chief patient safety officer at the Joint Commission, the nation's leading independent hospital accreditation agency. A survey of health care workers at 102 nonprofit hospitals from 2004 to 2007 found that 67 percent of respondents said they thought there was a link between disruptive behavior and medical mistakes, and 18 percent said they knew of a mistake that occurred because of an obnoxious doctor. ...Another survey by the Institute for Safe Medication Practices, a nonprofit organization, found that 40 percent of hospital staff members reported having been so intimidated by a doctor that they did not share their concerns about orders for medication that appeared to be incorrect. As a result, 7 percent said they contributed to a medication error." (Doctors behaving badly) All of that could have been prevented with just a slight attitude adjustment.

Additionally, not admitting to mistakes or trying to cover things up after the fact only makes it worse. "University of Illinois law professor Jennifer Robbennolt has done a series of studies that show apologies can help resolve legal disputes in cases ranging from medical malpractice and divorce and custody to disputed dismissals and personal injury. “Conventional wisdom has been to avoid apologies because they amount to an admission of guilt that can be damaging to defendants in court,” says Robbennolt, who surveyed more than 550 people about their reaction to apologies offered during settlement negotiations in a hypothetical injury case. “But the studies suggest apologies can actually play a positive role in settling legal cases. ...The apology fulfills some of the goals that triggered the suit, such as a need for respect to assign responsibility and to get a sense that what happened won’t happen again. So receiving an apology can reduce financial aspirations and make it possible for parties to enter into discussions about settlement.”" (Sometimes, an apology can deter a lawsuit)

Admitting mistakes, rather than running from them, is even good business. "After health care providers began admitting mistakes, apologizing and offering compensation, the monthly rate for new claims fell from just over seven per 100,000 patient encounters to 4.52 per 100,000, or 36 percent. The average monthly rate of malpractice lawsuits filed against the hospital fell by more than half, from 2.13 per 100,000 patient encounters to 0.75 per 100,000. The median time it took to resolve claims also dropped by several months, while the mean costs for liability, including compensating patients and paying attorneys, fell by about 60 percent. The average cost for lawsuits that were filed decreased, from nearly $406,000 to $228,000." When Doctors Admit Mistakes, Fewer Malpractice Suits Result, Study Says.

Conversely, when arrogance is tolerated, the consequences can be staggering. "In Anonymous Parents and Deceased Five-year-Old Girl v. Anonymous Obstetrician and Anonymous Hospital, the plaintiffs alleged their infant developed cerebral palsy after a difficult labor and delivery. Deposition testimony of the labor and delivery nurses indicated they were concerned about the lack of progress of the mother’s labor, but they were reluctant to voice those concerns to the obstetrician because of the doctor’s well-known tendency to respond negatively to such nursing input. This North Carolina case settled for $1.2 million." (Laska, L. (Editor) “Hypoxic brain damage to infant”, Medical Malpractice Verdicts, Settlements, and Experts, pg. 34 March 2003.)

Arrogance isn't just bad for patients, it's bad for doctors too. "[A] cultural expectation of medicine is that providers don’t talk about our lack of knowing everything in every situation. We don’t admit our humanness, our capability of making a mistake. We don’t want to seem weak in front of our peers. So we isolate ourselves, and this is never more evident than when we feel we have made a mistake. Instead of getting the necessary support from our colleagues, we keep quiet and go about our business as though nothing has happened. By doing so, we are shutting down emotionally and not allowing healing to take place." (The culture of medicine needs to change) How can anyone learn from, or heal from, making a mistake if they can never admit it? An opportunity for growth and improvement is turned into one of shame and secrecy.

We all know pride goes before the fall, yet somehow we all still fall prey to it. One reason for this may be simply because it's more comfortable. "It’s much harder to go into things realizing that every day, every moment, every child or patient is new. Going into everything with a clear eye, mind, and heart is so much more work—and means acknowledging that there is so much we don’t know. In fact, it means focusing on what we don’t know—and who wants to do that?" (It’s only through humility that we can achieve great things) Believing that we know what's going on, whether we truly do or not, feels more confident, more empowered, more capable. The trouble is, feelings aren't facts. We can feel totally right when we're absolutely dead wrong (sadly, no pun intended).

Entitled to be late??

This is a repost of a comment I made over at KevinMD.com. I read that blog partially because I know I'm going to read stuff that upsets me. It helps me focus my own thoughts for this blog. But this guy got my blood boiling, I have to admit. My heart is still racing as I type this, I'm so angry. Dr. Stewart Segal insists, "A doctor cannot be on time and take care of your needs." Wow... Now, I'm only an armchair 'psychologist,' but doesn't that sound like medical narcissism? Here is my comment.

My ex-husband was in the Navy. Whenever we traveled, we always planned to show up at home a full 36 hours before he had to report back to the base. Sure, the flight may only be 4 hours, but a lot of stuff can go wrong from point A to point B. The only excusable reasons for not showing up on time are: you're in the hospital, you're dead, or there's a national crisis (9/11).

You guys *know* you deal with crisis situations. That's in your job description. They tell you in school. They train you for it. You do your residencies in ERs.

What I want to know is that if all doctors are chronically late, why not PLAN for that. Sure you can't plan for the emergencies, but what about scheduling HOUR appointments instead of 15 minute ones? Sure that may mean there are block of free time where you don't *need* the full 60 minutes... But all y'all hope for the best every day without planning for the worst. That seems foolish to me.

And I think it's absolutely correct for me to demand that of my professionals. You get higher social status, you get better paid, better treated... It's not unreasonable to hold you responsible for your schedule. If any GED kid in the military can pull it off, why can't you?

The thing that I hate about that article is if you boil it down, essentially he's saying, "Oh, it's okay for me to hurt you because it's not really me hurting you, it's these other emergencies. It's not my fault. I don't need to take responsibility."

And you can try to blame this song and dance of "NOT MY FAULT!" on modern litigation, except that same attitude existed in 1847!!! [Medical Arrogance and the Effects of Prejudice]

This is a problem with DOCTORS. It always has been. And the sooner they wake up to that fact, the sooner the healing process can start.

Different Diagnoses - More than 100 medical disorders can masquerade as psychological conditions

I would argue that because it's become so "easy" to medicate anxiety and depression thanks to Big Pharma, that doctors frequently don't even consider the two symptoms. In some cases, I've run across doctors who want to blame my disease on the anxiety or depression rather than the other way around. There seems to be this pervasive magical belief that "bad thinking can make you sick..." Or that if there's a psychological component involved at all, well, now that you can check the little box on the diagnosis form, job done! Ship the patient to the head shrinker. The doctor's rush to fulfill his/her professional paperwork obligations, leaves them overlooking their patient obligations of a full investigation.

Confusing Medical Ailments With Mental Illness "An elderly woman's sudden depression turns out to be a side effect of her high blood-pressure medication.

A new mother's exhaustion and disinterest in her baby seem like postpartum depression—but actually signal a postpartum thyroid imbalance that medication can correct.

A middle-aged manager has angry outbursts at work and frequently feels "ready to explode." A brain scan reveals temporal-lobe seizures, a type of epilepsy that can be treated with surgery or medication.

More than 100 medical disorders can masquerade as psychological conditions, according to Harvard psychiatrist Barbara Schildkrout, who cited these examples among others in "Unmasking Psychological Symptoms," a book aimed at helping therapists broaden their diagnostic skills.

Studies have suggested that medical conditions may cause mental-health issues in as many as 25% of psychiatric patients and contribute to them in more than 75%.

[From Confusing Medical Ailments With Mental Illness]

If doctors were criminal investigators, they won't last past their first trial. In criminal proceedings, you're not allowed to just present a theory and then find the evidence to support that theory. All evidence must be collected, and all theories of the crime must be explored (even the ones that look like dead ends). Just finding a culprit isn't enough. You've got to prove it was that baddie rather than any of the other possible baddies out there.

But this would take an investment of time that doctors just don't seem to have. I don't know why that's the case... whether it's a doctor shortage, or bad time management within the system, or some sort of crappy incentives that drive our doctors to act this way. Whatever it is, patients are ending up the victims. We need to change this.

Medical Arrogance and the Effects of Prejudice

One of the most fascinating stories I have run across about medical arrogance is actually a story about doctors turning on one of their own.

In 1847, Dr. Ignaz Semmelweis figured out that if the doctors and students at his hospital washed their hands, it would decrease the spread of disease. This was revolutionary, because at the time, doctors believed that illnesses were caused by a 'disruption of the four humors', with the common 'treatments' being bloodletting, enemas, and cupping. Based on his discovery, he was able to drop mortality at his hospital from childbed fever by 90%. But his theories were rejected by the medical community. Other doctors believed there was simply no way they could be the cause of disease spread.

What absolutely strikes me is Dr. Semmelweis's reaction to the rejection. From Wikipedia:

Beginning from 1861 Semmelweis suffered from various nervous complaints. He suffered from severe depression and became excessively absentminded. Paintings from 1857 to 1864 show a progression of aging. He turned every conversation to the topic of childbed fever.*

After a number of unfavorable foreign reviews of his 1861 book, Semmelweis lashed out against his critics in series of Open Letters. They were addressed to various prominent European obstetricians, including Späth, Scanzoni, Siebold, and to "all obstetricians". They were full of bitterness, desperation, and fury and were "highly polemical and superlatively offensive" at times denouncing his critics as irresponsible murderers or ignoramuses. He also called upon Siebold to arrange a meeting of German obstetricians somewhere in Germany to provide a forum for discussions on puerperal fever where he would stay "until all have been converted to his theory."

*Emphasis mine, because wow... that sounds.... hauntingly familiar.

This wasn't a guy who was chronically ill. This was just a doctor going up against other doctors. And it was the act of their rejection in the face of clear evidence that drove him to that behavior. Simply not being believed, he became obsessive about the topic. This leads me to the conclusion that it's not being sick that drives us crazy, it's the disbelief of others that drives us crazy.

And with so many articles out there warning patients about the evils of obsessive thinking about our disease... I wonder what kind of revolution in care could happen it doctors simply expresses a willingness to believe in their patients.

Because that's largely what a medical education does: teaches doctors not to trust their patients. I saw a friend of mine go through med school, and when he became a resident, he constantly felt like he had no clue what was going on, despite his education. It's just all so HUGE. Doctors know their patients haven't gone through this, so obviously any of our observations are... suspect.

Studies on prejudice in psychology show that when people are treated with suspicion, they become depressed and unable to view themselves as in control of their lives:

"Our results show that perceptions of unfair treatment, like other chronic stressors, are psychologically burdensome... Many... suffer emotionally because they are unable to view themselves as efficacious and competent actors when treated with suspicion and confronted with dehumanizing interactions."
Keith VM et al (2009). DOI 10.1007/s11199-009-9706-5

Now, I had to take this quote out of context, because there haven't been any studies on prejudice towards patients as patients. All the studies are on race, gender, and visible disabilities. But the results are consistent. People feel depressed, angry, isolated, and suffer a loss of self-esteem if they feel the deck is stacked against them. Currently, however, patients get blamed for these reactions.

This needs to change.

I know this change is not something that will come easily. I have Semmelweis experience to warn me. I'll be seriously surprised if it happens in my lifetime. But he was eventually vindicated, even if he wasn't able to know that satisfaction.

Someday... *sigh*

[Update - July 15, 2011:]
This talk from TED by Tim Hartford provides other examples.