To change something, build a new model that makes the existing model obsolete.
-R. Buckminster Fuller
I know a lawyer who is extremely successful, lives in an immaculate mansion, has all his hair, is as personable and charming as a person can be. He also is divorced. I know a woman who dated him. She said everything about him is as near to movie star perfect as anyone she ever has known, except when he takes you to his house, where you are surprised to find he is a hoarder – furniture, piled higher than people’s heads, with paths through it. He is unaware of this part of his life being any less perfect than the rest of it. He just doesn’t see it.
Like a cat-lady I and my friends visited when we were children. We never had been on her property. It was in a leafy part of town where houses were not cheap, on a quiet lane far enough from the street to be invisible. Very spooky to us. On a summer afternoon, after stopping at the bottom of her drive to discuss whether we really were going to go through with this, we peddled our bicycles slowly, apprehensively, up her dilapidated driveway to her severely deteriorating house. There were cats and cat bowls everywhere, but no lawn. There had been lawn, but the dense shade combined with the cat feces and neglect rendered it bare dirt with the occasional weed. A large roofed rap-around porch was between us and the door which was a wooden screen door that was wide open. We tried ringing the dead doorbell, then knocked and said hello. No answer. We stepped inside. Cat dung and cat dishes and cats were on every surface including the stuffed furniture. It reeked. Most cats glanced at us and then looked away with no interest. None ran to us seeking attention like cats we were used to. A noise upstairs sounded like someone stirring. When no one came down or said anything, I said “Hello?” No response. We continued quietly tip-toeing through the stench and the feces past other rooms until we reached the kitchen where the back door hung open like the front door. We left through it discussing the rumors we had heard apparently being true, about cat-ladies not seeing the world they create. Like hoarders. And others.
Say to anyone working in medicine that when things go wrong in medicine, it gets reported accurately only 2% of the time. Tell them that 93% of the time there is no hint whatsoever in the record that anything negative occurred, from murder and rape to ineptitude and indifference. Say that and see if you do not experience denial, if not umbrage, at the suggestion. One journalist called it “pathological denial on an almost cosmic scale.”
The lies people choose to believe in order to make themselves comfortable are the problem. As far as I can tell, everyone trying to fix medicine appears to imagine that new laws or policies or requirements or ethics or education or some form of top down control can solve that. It cannot. It never has and never will. In every walk of life, people do this. This is normal human behavior. The only thing that can be done is to enable other people to see the truth though an unfiltered lens, or at least a lens filtered to match the self-interests of people who without that would become victims. When people have control over how well you live and even whether you live, you have a right to know what you need to know to make safe decisions. That information is not, and never will be, collected by health care workers.
It is not in the interest of hoarders or cat-ladies to see the worlds they create. Similarly, it is not in the interest of health care workers to see the world they create for patients. They do not see the furniture or the feces. The people whose lives they can ruin have a right to know how to make safe decisions.
This is not to vilify health care workers. It is to save patients. Health care workers are not gods. They are humans with extremely strong self-interests they themselves do not recognize. And they have a problem. They never can be a good source for data about outcomes. Even if in the future they finally become aware that they have these problems, they still will have these problems, because they are humans. Patients cannot make informed decisions without accurate data about the outcomes – accurate data that can be collected only from outside of medicine by people with no connection to medicine or to insurance or to government. Otherwise it will be tainted, if not obliterated, by the cosmic denial.
For instance, currently patients have been force-fed the nonsensical belief that medicine is too complicated for patients to understand and make sound decisions. People in medicine swallow that as though it is incontrovertible and persuade everyone else it is true. You do not have to be an engineer who knows what a torsion bar is in order to understand not to buy a car that has a history of blowing up more frequently than any other car in history. What you need is that data.
The government has tried to require that patients get the information they need, but they tried to accomplish that by requiring people in health care provide it – like with the requirement that when you are getting a hip replacement, they first must educate you so that you can make an informed decision about which one to get. As though they are complying with that, health care professionals teach patients the two different ways that they know to do the operation – information that would be useful for passing a course in medical school but of no value whatsoever for the decision patients need to make.
Can you get information comparing the one and five and ten year outcomes for patients who previously got hip replacements, or anything else in medicine? You cannot and neither can they. It is not in their interest for anyone to have it. So no one does. It is not even in their interest to understand that.
Comparative Shopping
Without such data, for twenty years more than a million patients got metal on metal hip replacements that put toxic levels of cobalt and chromium into their blood streams without anyone in medicine collecting information on the outcomes to see what the outcomes were. Do you think that in those twenty years one single doctor told a patient, “Oh, by the way, if you choose this metal on metal one, perhaps a third of the patients who do come down with dementia, blindness and/or heart failure as a result of toxic levels of heavy metals in their bloodstreams.” That is what patients need to know – what has been the outcome for other patients 6 months ago, a year ago, five years ago, ten years ago. They need to know what has been the cost and outcome for patients with this operator in this facility compared to other operators in this facility and in other facilities – information that no one in medicine ever will be selfless and objective enough to collect accurately because they are humans with self-interests like all other humans, just like cat-ladies and hoarders.
No one in medicine tries to track anything like that, not even for their own understanding. They do not want to know it themselves. It is not in their records. It especially is not in their minds. Only 2% of what goes wrong in medicine gets in the record accurately. 93% never get in the record at all no matter how overt and damaging the injuries were (see medical reporting). Violent crimes committed against patients in front of witnesses get no mention in any record. It can end the career of a health care worker to put it in the record. A year later none of the witnesses even will remember it, such is the nature of human memory. It is only the traumatic memories of victims that are immutable. War veterans who experienced traumatic events, forty years later repeat the exact same story they told minutes after it happened. All other memories humans automatically rewrite to suit their changing purposes over and over as time goes on. Injured patients are the ones with the traumatic memories that do not change. But medicine has come up with a way to erase even those.
People and institutions gravitate to their own self-interest. It is a truism about which many will be in denial forever.
Here is how that plays out
The physicians who refuse to diagnose the injuries of patients who were injured in medicine do not believe that patients cannot get diagnoses of injuries incurred in medicine.
That is all you really need to know to understand how people in medicine think and make records. They don’t. They do not even make an accurate record of why injured patients came asking for help (and do not believe they don’t). Injured patients can find nothing in any record about what happened to them. That is normal (but try to find anyone in medicine who is aware of that).
This disables the ability of patients to make informed decisions. That suits the purposes of people working in medicine. It does not mean people in medicine are evil (well, okay, sometimes it does). But it definitely means they are not saints. They are humans. Humans’ perceptions and memories are self-interested. In medicine they believe they are above this. Stupidly the patient community believes whatever those authorities believe. But what else do patients have to go on? There is almost no information available to them except that which medical professionals choose to gather and record. Patients cannot make safe decisions with only 2% of the most important information necessary for making informed decisions.
If you wanted to hold a contest to find the most subjective person on earth, the first requirement to gain entry into the contest would be to believe that you are objective. People who imagine that they are objective are among the most subjective people on earth. If people in medicine were not, if they truly held the interests of patients above their own, they would have explained to patients that metal on metal hip implants were toxic. Instead, they stayed in line with one of the mantras of medicine that says “Don’t go looking for problems” and did not put two and two together when their patients came back with problems caused by cobalt poisoning and chromium poisoning.
Medicine unnecessarily kills as many people per week as firearms kill per year (see Preventable Deaths). Medicine is the most dangerous place most people in the USA ever go. It is outrageous that patients have no ability to see what and where the dangers are so that they can avoid them. It is possible to collect the information that will enable them to do that. If we tracked just 3% of patients, we could learn an enormous amount of what is necessary for patients, for the first time in history, to be able to make the very first judgement any patient must make, and that is whether the risks of seeking care are greater than the risks of not seeking it in the first place. How could we get 3% to sign up for tracking? Have you ever spoken to a patient injured in medicine? They get so that they wish they could get all the information about their own cases into the headlines of whatever media exists, just to try to prevent what happened to them from happening to anyone else. But they cannot even get their own primary care physicians to make an honest record of it.
This isn’t Yelp reviews. It isn’t what patients say. It is watching what happens. If 70% of patients treated by Dr. A in facility B leave with MRSA infections, and they don’t anywhere else, it doesn’t matter what patients say. Dr. A might be so charming that they love him and defend him, recommend him to other patients and believe everything he says. But the data shows the truth.
Small counting
There are cases like the physician who groped adolescent girls year after year. The girls were screaming mad. The parents were screaming mad. The state medical board did nothing. The police would not do anything. The press would not listen. What is typically the hope of last resort for patients, lawyers, would not take the case. The physician got away with it for fifteen years, by which time enough of the girls had become adults to bump into each other socially and form a group. A group of adults with the same memory still cannot get help from state medical boards or the police, but they can get a lawyer (even though not a medical malpractice one). It should not take fifteen years and hundreds of victims to be able to do something about such a problem. With data collection, this could have been addressed fourteen years earlier.
There is low hanging fruit. Tracking all the data of a small percentage of patients will uncover some of it, which will result in people asking to be tracked, which will uncover more. And it will grow.
People and institutions cannot monitor themselves objectively. In all things they gravitate to their own self-interest no matter what the cost to the world around them. That is normal. It is time to stop pretending that medicine is above thinking like a cat-lady. It might be that medicine is the most severe example of cat-lady thinking one ever could have. It’s not their fault. They are humans. That’s what we humans do. In order to protect patients from it, we need to collect data from outside of it.
That it is what this site is about. Not vilifying doctors and nurses, but saving patients.
Solutions ……….|………. Problems
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……………………. | ………… Myth #1
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Patient Agency… | …………………….
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Nequamitis ……. | ……………………
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……………………. | Conflict/Interest
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……………………. | ………… Loyalty
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……………………. | ..Wall of Silence
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……………… …… | …….Blacklisting
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…………………… | ….Psych of Care
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…………………… | … Transparency
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…………………… | .. Charles Cullen
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…………………… | Orville L Majors
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…………………… | ……… Kayshyap
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…………………… | ………….. OSMB
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…………………… | ….. Semmelweis
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…………………… | . Benjamin Rush
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…………………… | …. Government
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Patients Boards. | ……………………
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Campaign … | ………………
“If we can get just 10% of people to be smart patients, it will change the system.” – Mehmet Oz, surgery professor.