"Placebo Effect" Causes Greater Harm than Good

A review by Psychology Research (@psychresearch) of 21 randomized trials shows that the "placebo effect" causes adverse side-effects in 45% of study participants. This is an absolutely fascinating result, because previous studies of the placebo effect show that a pill that has no medicinal value whatsoever causes participants to improve at a rate of only 35%. What this means is that taking a pill with no medicinal value whatsoever is more likely to cause Harmful effects at a greater rate than it provides a benefit. This could have a lot to do with medication non-compliance and aversion to doctors and hospitals. If nearly half of people report an adverse effect from just taking a pill, and only a little more than a third report a positive effect, then it's no wonder why most people are adverse to taking medication!

I've always though reports on the placebo effect were a bit silly, and now it makes sense why. Scientists and doctors were always delighted to point out that we stupid patients were dumb enough to be fooled by a sugar pill. Doctors took this as proof of their magical, majestic auras... That just the idea that what you were taking was a "medicine" was enough to make you better! The idea of a magic pill was so powerful, that the medicine didn't even have to be real. Patients would get better just because you told them to. How amazing is that!?!?!

Turns out, that was only part of the story, and not even the most important part.

In fact, the though of a medicine is so powerful that it actually HARMS patients at a rate of nearly half. Nearly HALF! That means that patients are so leery, so worried about what their doctor is doing to them, that they will experience an event that convinces them a sugar pill is damaging them.

This experience of harm at a greater rate than help actually fits with what we already know about the human brain. We experience loss at a rate of three times higher than gain. For example, if you insult your spouse once, it takes at least three compliments to make up for that one slight. Similarly, when frightened, we will assume that the noise in the grass is a tiger, rather than assuming it's the wind. Why? Because that's what helped us survive vicious predators as stone-aged cultures. In the past, it has been biologically advantageous to assume the worst. So our brains are hard-wired to do so.

So it makes perfect sense that patients would report rates of greater harm than good from a medication that does nothing. And doctors should realize that they are working at a disadvantage when patients are left to guess whether a medication is going to cause harm or good. The placebo effect is NOT some positive powerful force. The placebo effect is, in fact, a powerful NEGATIVE force, and one than can undermine the entire true effect of a medication! Studies prior to this have shown that chronic illness patients have a medication non-compliance rate of a third to one half, and now we know why. It makes perfect sense, and the myth of the positive placebo effect being the only force at play is totally BUSTED.

We also now have a new understanding of non-compliance. It isn't willfulness. It isn't a lack of willpower or an inability to form new habits (though these things can exacerbate the problem). What is really at work here is the fundamental nature of the human brain to avoid harm in situations where not all the variables are known. If this doesn't speak volumes for the need for thorough patient education, I don't know what does. Humans are survivors, and you don't survive by assuming everything is just fine when you know there's something going on that you can't see. Taking a medication is a RISK. So naturally, it is better to assume that the medication is more likely to harm than help when you don't know what it does.

This also speaks to the great divide between doctors and patients in our current medical system: doctors assume that their patients should just rely on their expertise. However doctors get so involved in science that they lose sight of common sense things and get lost in ego-boosting preliminary results, like the belief that the placebo effect resulted in automatically better results for a medication. I don't know how many years it's been pounded into my head, "well, you know, you'd feel better if this was a sugar pill, so I don't know why this real medication isn't working on you..." Well, doc, turns out it's because you were misled to believe just because you have M.D. After your name that means I view you as a Minor Deity. As things really are, M.D. implies Maybe Disaster and you terrify your patients, leaving you at a deficit the moment you show up.

If I could have one wish, it would be to educate the entire medical field about this. We need to wake up to the realities of how I humanely we've been treating patients by keeping them in the dark. We have been willfully inflicting patients to psychological damage as a result of our treatment of them, believing our medical professionals are supposed to be seen as intervening angels, when really they were seen as cloak-and-dagger devils. And as long as we were told that medicine worked a third of the time just because it was called medicine, the angelic myth persisted.

The fairy tale is over. It's time to wake up to reality.

Side Effects: Telling the Real from the Imagined - Wall Street Journal, July 7, 2014

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.

Patient Non Grata

I wish I could say I did something wrong. I wish there was something in my behavior I could correct. I wish there was some sort of misconduct on my part for which I was being reprimanded. But there's nothing. I've done everything right. I've followed all the instructions. I've done everything I was told to do. Yet my GP is still washing his hands of me, and has no one he knows who does Internal Medicine and takes Medicare that he can refer me to.

Really? You work in a low cost clinic, and you know of absolutely no one else in the entire state that also does what you do? You suddenly completely forgot how to use Google? Excuse me while I find that a little difficult to swallow.

Meanwhile, my test results continue to come back abnormal, only to then have the doctor tell me, "There's nothing wrong here. You should stop taking your medication. That's what's making you sick."

Really? Because I remember being a HELL of a lot sicker BEFORE I was put on medication. And bakc then when the test came back abnormal, they put me ON medication, and --- you're not going to believe this --- I felt and got BETTER! Holy $#!+, what a concept!

I don't understand what's happening here. I don't dare leave this state because this is the first time in 10 years that I have pain & nausea control. But now it looks like I may be screwed anyway, because these people don't want to see or treat me.

I will call a highly-ranked GP tomorrow and see if she'll take over care, but I'm reasonably terrified.

Mother of Gods, what am I supposed to do?

The BIG Sleep Myth

Did you know that it's completely UNNATURAL to sleep for 8 hours a night? Think about it... no other animal sleeps like this, and it would be extremely dangerous if it were actually required! Your "sleep issues" may not be issues at all, but a complete misunderstanding of how our bodies REALLY work. Not only do scientific studies prove this to be true, but back before the Victorians and artificial light, it was considered natural to have a First Sleep, followed by an hour or two of wakefull ness, followed by a Second Sleep.

His book At Day's Close: Night in Times Past, published four years later, unearths more than 500 references to a segmented sleeping pattern - in diaries, court records, medical books and literature, from Homer's Odyssey to an anthropological account of modern tribes in Nigeria.

Much like the experience of Wehr's subjects, these references describe a first sleep which began about two hours after dusk, followed by waking period of one or two hours and then a second sleep.

"It's not just the number of references - it is the way they refer to it, as if it was common knowledge," Ekirch says. [http://www.bbc.com/news/magazine-16964783]

How many people are shoving "medicines" down their throat for a problem that shouldn't be seen as a problem? And how much healthier would we all be (including shift workers, who have a notoriously difficult time switching between schedules) if we recognized our true nature?

Makes you wonder what else we might have wrong, doesn't it?

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!!

I know who to blame for why your doctor has no time....

There's a great story from National Public Radio, about why doctors have had to rush appointments (What's Up, Doc? When Your Doctor Rushes Like The Road Runner). The short answer? Doctors aren't paid to listen. Health insurance companies don't reimburse enough for listening. And in a lot of cases, believe it or not, doctors are running so close to the red, they can't afford to listen, as a result.

According to one infographic from the Wall Street Journal (and supported by the NPR story), it takes seven staff members for every single doctor. Can you pay seven salaries on your income? Remember too, that some of these salaries would have to be other health professionals, like Registered Nurses. This ain't no minimum wage gig. Now, remember that you're also going to have to afford a medical office space. There's no doing this job from home, and a regular retail space won't do... There are all sorts of heath codes and other business expenses. Now throw on top of this insurance costs (one of the highest groups, obstetricians/gynecologists could find themselves paying up to $64,000 or more for coverage, and that's for a spotless record), and suddenly that doctor's salary doesn't look so sexy. It makes perfect sense why more doctors are trying to cram us into 15-minute visits.



I know exactly who to blame for this too: Harvard economist, William Hsiao.

See, as Medicare goes, so go the insurance companies. And he was the guy who changed the payee system for Medicare. He came up with a new model in the 1980s. This model determined how much a doctor got paid, based on how difficult a task it was, modified by how expensive their education was to know how to do that task, modified by how much stress and/or risk was involved in the task. (Check out the book, Next Medicine: the Science and Civics of Health, for a more complete history.) Listening? Not hard---if you don't come to med school knowing how to listen, you probably shouldn't be there. Amount of special "doctor training" needed to know how to listen? Zero. There are no med school classes on listening. Stress involved? None... at least not when comparing it to anything else, and especially not as stressful something like trauma surgery. Risk involved? None---no one as ever been killed from listening. Payout by insurance? Let's see... Nothing, multiplied by nothing, carry the nothing, comes out to... nothing! (Big surprise.) The same goes for reading files, and organizing care following a major procedure. Doctors don't get paid for these things, so they turn into low priorities. Low priorities, even though these are possibly the most important parts of medical care: gathering information so you know what you're dealing with, and disseminating information so that things are done right!

But "how important is the task?" never mattered to Dr. Hsiao. It's not his fault, really. For one, everyone underestimates good communication and documentation... until they need it. (It's why I get paid so much as a technical writer.) And second, Dr. Hsiao wasn't paid to care either! The government signed his checks, and the government was looking for ways to save money. Dr. Hsiao was paid to come up with ways to save the government money on health care. The easiest way to save money? Don't spend it. The next easiest way? Find a way to pay less for the same things. The only problem with this, it changed doctor behavior. And it changed medical school behavior too.

Let's say that you had the opportunity to be a race car driver. You had the skills, the talent, and the changes in life, that now you're going to get paid to break the speed limit. Only, before you graduate from racing school, you have a choice. You can go race a Formula One car, with all the fame, money, and hot babes screaming for your autograph. Or, you can go race a banged-up economy car, at some obscure county fair, with 5-year-olds screaming (not for your autograph... just screaming because they're five). Which one would you choose? Now you understand why there's a national shortage of General Practitioners. Although 56% of patient visits in America are primary care, only 37% of physicians practice primary care medicine, and only 8% of the nation’s medical school graduates go into family medicine.

The United States healthcare system has been facing a decline in its primary care workforce, infrastructure and access to primary care services for several years. A number of factors, including poor reimbursements to primary care physicians, low comparative income, and poor quality of work life due to high patient loads, have contributed to more doctors choosing to train and practice in specialty medicine. This trend has lead to a shortage of primary care providers across the country—likely contributing to fragmented care, inappropriate use of specialists, and less emphasis on prevention. (Study by the Henry J. Kaiser Family Foundation)

Which really begs the question... Why are we looking to the government to fix the problems of health care, when government is the one who made the health care problems in the first place?? They took a three-legged pig and turned it into a porcupine!

(Okay, I see your look... let me explain.)

Say you've got a three-legged pig. Poor thing doesn't walk so well, so here comes along a guy, and he says he's got this great solution! Stick on an artificial leg. Only the artificial leg doesn't work so goo either. It helps out some, but in other areas, the pig is still as broken. The great solution? Stick on another leg! That will help cover the deficiencies of the first leg, and make up the difference. Only that's not enough to make the pig normal either! Stick on another leg! And another! And another! One of these fixes is going to work someday!!! They do this, until the poor creature has so many artificial legs dangling off of him, it's no longer a pig, it's a porcupine.

Now, I'm not suggesting we do some sweeping change to wipe the legs off this pig. That's just a metaphor. But in trying to fix this problem, do we really want to go back to the group of people who thought it was a good idea to do it this way first place? We've been working on fixing this "health care" problem since the introduction of Medicare in 1965... And what was the result of that sweeping change? A doctor in the 1950s could expect to make three times more than a teacher. Nowadays? General practitioners make 3.5 times as much as a teacher, on par with 1950s rates. But doctors that specialize? Those doctors make six-and-a-half times more than a teacher.

"In 2008, physicians practicing primary care had total median annual compensation of $186,044, and physicians practicing in medical specialties earned total median annual compensation of $339,738." (Bureau of Labor Statistics Occupational Outlook Handbook 2010-2011 Edition, Physicians and Surgeons)

"For high school teachers, median salaries in 2007 ranged from $35,000 in South Dakota to $71,000 in New York, with a national median of $52,000." (U.S. Department of Labor: Bureau of Labor Statistics. (August, 2007). Spotlight on Statistics: Back to School.)

Good work, Dr. Hsiao! Even though 60.5% of visits made are made to primary care physicians, and even though the most frequent principal reason for visit is a general medical examination (National Ambulatory Medical Care Survey: 2008 Summary Tables, tables 1, 9, 13 [PDF - 478 KB]), the government has guaranteed that there will be fewer primary care doctors available. Additionally, the government has guaranteed those doctors will be pressed for time, due to cost constraints.

If we want doctors to take time, they need to be reimbursed for their time. I don't know what the solution would be. But the solution to a problem caused by government, is not to add more government.

[Edited to Add]
Seems Peter W. Carmel, President of the AMA, has a similar notion:

The Medicare physician payment formula is a case-study in failed policy. Physicians have long known that it is not working. Polls show that an overwhelming 94 percent of Americans believe the massive cuts it schedules are a serious problem for seniors. Even members of Congress from both parties agree – and that is no small accomplishment – that it is bad fiscal policy and destabilizes Medicare. We now face a looming cut of about 30 percent on January 1 from the failed formula. (AMA: Moving past a failed Medicare formula to focus on quality care)

Myth Mugshot Contest -- Medical PTSD

The only real way to combat myths, misconceptions, & stigma is by raising awareness and sharing what is real: facts, stats, info, and narratives. This is exactly where Health Activists excel and align. No matter what your condition or health focus may be - you are dedicated to filling in the information gaps where stigma. That's why we've created the Myth Mugshot Contest.

So often, patients and caregivers are labeled (or at least feel labeled) by their health. Symptoms, diagnosis, treatment, and other things that go along with having (and fighting for) a health cause can open us up to judgment from others. But, at the end of the day, no one can label you - only you know yourself and what you're going through. Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong. But instead of dwelling on these labels we so often hear - we're doing something about it.

Let's play off of that idea by sharing what is real, true, and correct - and labeling ourselves with that instead.

This week we'll be sharing Myth Mugshots - where members of the WEGO Health team share one thing we think is true, important, and will affirm Health Activists and patients. Then, next week, we hope you'll do the same. Share a picture of yourself holding up a piece of paper that tells your truth. Think of a common myth, misconception, or discouraging thought and reclaim it by writing down something true or a fact about you, your health condition, health community, healthcare, or patients in general.

Now - share your photo! Add it to our Facebook wall and have your friends/followers "Like" it. The photo will the most "Likes" will get a feature on our blog, a highlight on our FB page, a feature in our June Newsletter, and a WEGO Health T-shirt (here's what they look like).

Looking forward to your Mugshots and seeing your mugs as well as your truths. Feel free to invite your community members to make one as well. We'll post our team Mugshots this week so you get the idea - and then you can start posting your pics next Monday, May 21st and having your friends "like" it. We'll pick the winner on May 28th.

I've written about Medical PTSD before. It's something that is very common among people with chronic illnesses. Too often, we are doubted, and our very ability to judge reality is called into question. We know from psychological studies done on other at-risk groups, that disbelief of our situation, of our struggle, caused depression, shame, and low self-worth. We become unable to view ourselves as in control of our 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

The easiest thing for a doctor to do is not treat. The shortest sentence in the English language is: "No."

When I'm not believed by a doctor, it's almost an instant panic attack. See, I sat alone, for years, in excruciating chronic pain. No one had to treat me. No one did treat me. And when my pain finally was treated, with an electronic device, I was the only one in the study to use it at maximum strength. My migraines could still shoot past what the device could do. I floored doctors with my ability to act as if nothing was going on, as they turned the juice up to 20 milliamps of current, direct to my Occipital nerves. They could make me go back there again, simply by saying, "No."

Doctors are the gatekeepers to treatments, advanced medications, and nearly all methods of symptom management. They mean the difference between living life, and enduring torture. Plain and simple. Is there any wonder, then, that chronic illness patients are walking around, traumatized?

One of the therapy methods for treating PTSD, is re-establishing the patient with a sense of safety in their own body. Chronic illness patients don't get that safety. It's our own bodies we need to be saved from! To quote a pretty hard-core rap song, by Rage Against the Machine, "There'll be no shelter here --- the front line is everywhere."

And other things have happened. Things I still have trouble writing about. I was hurt. I told him to stop, and he didn't. No one else in the room stopped him, either. My screams were heard three floors down, in the pharmacy. They almost needed pliers to remove the needle from my skull, he dug into the bone so deep. No, it wasn't sexual rape. But it was a violation of my body, all the same. It's perfectly normal to be a bit bent out of shape around doctors after that. Other people have stories like this, and worse.

I tried for years to ignore just how badly I was traumatized. But it came out in my behavior. It come out in an overwhelming sense of doom, that would leave me paralyzed and speechless. It would come out when small things when wrong, and I'd freak out like the world was ending (because, for me, it had been close to true too many times). I would assume I was inadequate to meet the challenges of the situation, and navigate them safely, because too often in the past, this was correct. It wasn't until my brother pulled me aside, and identified it as PTSD, like his military PTSD, that I realized what was going on.

Even still, it wasn't until my health was on the line (again) and I absolutely had to go back to the doctors, that I sought out treatment for my PTSD. I tried to do it on my own at first. I made it through the doctors appointment. I was polite and did everything right. Then I lost my $#!+ in the parking lot, after returning to my car. I broke down in near-hyperventilating tears. Nothing in the doctor's visit had gone wrong! But I was still inconsolably freaked out. I knew then, I had to get therapy before I started trying to do this again.

Things have gotten much better since then. I'm on medication, (or what I like to call #headmeds) which has helped significantly. I'm on a long-acting anxiety medication, and I have short-acting anxiety pills for breakthrough panic episodes (now fewer than 3/month!). I have my symptoms managed, and my success with doctors over the past year is not small feat (including withstanding an awful situation at the University of Colorado). Talk therapy, including EMDR, had a lot to do with that success. The doctors and counselors over at Boulder Mental Health Partners have done a wonderful job. (And it sure does help that they don't have stuffy medical offices and don't wear lab coats!)

I will have this the rest of my life, no doubt. But as I get older, those wounds will heal. I can still be triggered, but as time goes on, those triggers should fade. There is always the possibility of future trauma, but that's true of any human activity. I will face the situation as best I can, and worry about picking up the pieces after. I don't have to try to anticipate every possible bad thing that might happen. I'm capable enough to be able to think things through in the moment. And if I'm overwhelmed? I can always return to therapy.

PTSD is very real. And you don't have to have been in the military, to suffer from it.

Patients are not teenagers

Oh, I knew this article was going to get my Scottish up the moment I read the title: Being a physician is like trying to parent two thousand teenagers. Pretty insulting, no? But a good article title should want to make you read more, and pissing someone off is a great way to do that. I knew the article would give examples that would justify the title, and the author delivered. But I also knew I would have a lot to say on the matter. The doctor is the one ultimately in control of these conversations. If they're going badly, it's the person behind the wheel who's to blame. Here was my reply.

I may have a solution for you. Bring them over to your side. You know your right. And they will come to understand you're right too, if you can give them a clear picture of what's going on in your head.

I believe your issue is not your patients but the communication you have between your patients. Right now, I see both sides fighting to get their point of view heard. With the exception of the drug seeker (good catch, by the way!! It's great that Illinois has a registry like that), what I see is that your patients don't feel in control. You are trying to explain to them why you're right and they're wrong. But no one likes a lecture. They may be acting like teenagers because they're responding to you *treating* them like teenagers. What I hear you saying is, "No... you can't have this and here's why." Instead, why not try inviting them along your journey of decision making?

When patients come to you, they're in distress and they're scared. Of course they don't know as much as you. So you're going to have to help them, and be very gentle and patient with them. You have the education, but they're the ones who ultimately have to pay the price. They're depending on you to show them the correct course of action. If they feel that your goals and their goals are different, you're going to have conflict. My suggestion is slow your conversations down---this is an emotional minefield, laden with hidden traps. It may feel like you have to simplify your conversations and say some things that seem obvious. But nothing is obvious when people are upset and in need.

First, let them know that your goal is to see them---your patient---happy and healthy. Next, let them know that you understand the decision is up to them. You're going to provide information, and then they get to make the choice (even if the choice is to go to a different doctor because you won't prescribe). Let them know that you understand what they want: "I hear that you want me to prescribe these antibiotics. But first, can I let you in on my train of thought?" Then explain how you see the situation, what the options are, and what you see as potential problems. You can say things like, "I would *like* to give you this, but here's what I'm worried about." Lay out the consequences. Let them know why you're so worried about doing what they're asking. When they have all the evidence, they'll be able to make a good decision.

When it comes to end-of-life decisions, you have to know that people are going to become unreasonable. This is End of Life.... the stuff Elisabeth Kübler-Ross won 19 honorary degrees about. There is one simple question I would pose to that man: "How would you like your grandmother's final days to be? Do you want her hooked up to machines, being disturbed at all hours of the night for this and that... Or would you like her to be able to rest and have peaceful days surrounded by her loving family? Do you want her to have to fight a battle every day until her last?" Let him understand what he's asking for. He has no way of knowing how difficult it is. You said as much yourself. Explain what the consequences are *beyond* extending life.

You know these people would make the right decision if they knew what you knew. What you've forgotten is how long it took you to learn those things. Your patients only have these few moments in your presence to learn what you know. You had years of hard work. It's not reasonable to expect them to understand like you do. And you can't blame them for being skeptical of your answers---our culture is one of "buyer beware." Different doctors do different things---if one doctor did it this way and you won't, you're going to have to expect to defend your decision. That's the way it works in any industry.

If you don't want 2000 teenagers, try to stop treating me like a kid ;)

When I read the article, all I could hear was, "I know what's best! I got all this education! They should do what I say!" Who likes to be treated like that? "Oh, thank you for asserting your dominance over me! Now I realize I am a poor, ignorant slob. I will do what you say without question!" Um... I don't think so.

Doctors, if you are in charge, then you need to take responsibility. You're saying that you know best, like a parent. You took all the decision-making away, like a parent. You treated their disagreement with your course of action like rebellion. And your surprised your patients end up acting like children? You're not treating your patients like adults. You're the one who put yourself in the position to act like a parent. There should be no surprise why you feel that way. Your patients are not the ones to blame.

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 lie?

I'm not Catholic, but I have a ton of respect for the Jesuits. Not only will these guys admit the contradictions in the Bible, but they'll happily point them out. They'll let you in on all the dirty secrets of Christianity. They'll take all the skeletons out of the closet and put them proudly on display. It was in a Jesuit class that I heard: "I don't care if you bring in your Bible from home, one translation is just as bad as the next." What I find so amazing and what I respect about this is that all those flaws and shortcomings don't shake their faith. They don't get defensive about their religion having flaws. They're not ashamed and they don't try to be perfect. They leave perfection up to God.

I've heard some of my friends proclaim, "I'm never going to take a medicine that they can't tell me how it works!" I'm very happy for them if this turns out to be the case. But I'm a bit more realistic. Medicine has been around a heck of a lot longer than our understanding of how these things worked. We don't understand half the things our bodies do normally let alone when they malfunction. We don't understand how one medication can work for one person, and not for another person. We don't understand why one antibiotic would work on an infection and not on another. A lot of times it's a just a crap shoot.

Right now, there is some sort of obstruction in my ureter causing urine to back up into my kidney. I've already got two large stones (7mm) that they're going to need to break up with ultrasound. But that can't happen until we figure out why my kidney isn't draining properly. It could be a type a kidney stone that doesn't show up on Xray or CT scan. It could be something outside pressing on the tube and not letting things flow properly. It could be something else inside the tube causing blockage. This could be scarring from passing previous kidney stones. I'm going to have a scan with contrast on Wednesday to find out more. I'm praying and hoping it's the other kind of stone. In that case, all I would need is lots of fluids, pain killers, antibiotics and time. If it's another type of blockage it's going to require at least two surgeries to repair the ureter. Leave it alone and it will cause eventual kidney failure and possibly death. Fun.

What disappointed me the worst about all of this, however, was the song and dance the doctor gave me about how he'd never heard of this causing pain and that I was possibly imagining things. And yet, when I go online to do research, I see time and time again that this is a condition that causes severe pain, and that I am completely valid in my experience. I'm not getting this information from daytime TV. I'm getting this information from reputable, scientific sources like Cedars-Sini, the Mayo Clinic and the National Institute of Health. And when all of them say my pain is valid... it destroys my faith in the medical community one more time.

Doctors: You want me to trust you. You want me to treat your learning and knowledge with respect. You want me to put MY LIFE into your hands with a surgery. And then you go an lie to me... Why? What is so awful that you can't tell me the truth? What is so important to hide that you would throw away your professional integrity? What is worth risking our doctor-patient relationship? And what the hell has happened to the medical community that PAIN is denied treatment and blamed on the patient's imagination? Are all doctors supposed to be torturers now? What is going on??? In a profession where trust is paramount, where we patients are coming to you in good faith seeking treatment by your hands... why lie?

But the lies aren't the saddest part. The worst part is just how common it is. I expect my doctors to lie to me. I double-check everything online, I'll talk to other patients, and I always get a second/third/fourth opinion from the other doctors I'm seeing. It's such a breath of fresh air when a doctor really tells me the truth. It immediately wins my loyalty and I'm able to relax. Here is a doctor who is going to give it to me straight. They're not try and put on some flim-flam show about how godlike they are for just studying medicine. They know the world isn't perfect, that medicine isn't perfect, and that imperfection is no reason to give up, cover up, or lie. Like the Jesuits, they didn't let the flaws and shortcoming of medicine sway their faith. As a result, they were able to hold on to mine.

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

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.

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.