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Patient Advocate

What kinds of things can a patient advocate do for a patient?

When the mother of one of the top insurance executives in the nation got breast cancer, he pulled every string he could trying to figure out what care would be best for her. He never was able to figure it out.

I stopped paying attention to Mammosite (one of the newer cures for breast cancer) years ago, but when I last checked 45,000 women had been treated with it without anyone ever looking to see whether it was producing results that were better or worse than previous kinds of care.

There is so little accurate information to work with when trying to guide patients that there is scant little that an advocate can do. Odd that they don't usually know that.

How much can a patient advocate do?

As I have written other places on this site, there is low hanging fruit that could be known. For instance, according to the National Practitioners Data Bank, 4.8% of physicians are responsible for more than half of all medical malpractice suits. That is 41,000 physicians. They are in every community in this country. And no patient or patient advocate can tell you who they are. It is a federal offense for anyone in medicine to tell.

These are not even the most dangerous physicians about whom patients need to be worried.

What data does anyone have?

You might remember a few years ago when studies began being done with a system that they called the “Global Trigger Tool,” an error catching method. In one test it identified 354 instances of actual harm to patients where physicians, nurses and other health professionals reported only four "events," and that is in spite of the fact that the global trigger tool doesn’t catch iatrogenic injuries that become worse as a result of no one being willing to diagnose the original injuries in order to prevent a record being made of them (which appears to be the most common response to iatrogenic injuries), and it doesn't catch misdiagnoses - the most common cause of patient harm.

Which data gets collected depends on who collects it

You’ve probably heard it said that an autobiography is a novel in which the author is the hero. A medical chart is too. At the end of an operation a surgeon does not write in the chart, “Whoops. Messed up that one.” He/she writes that the operation was perfect with no complications even when it disabled the patient, except in rare circumstances when there is no hope of covering it up. But here is the most difficult thing for patients and their advocates to understand. Health care professionals do not believe that they do that. Search on “Dunning Kruger Effect” if you want more depth on that than I am going to give you (I am so glad for that study – for years I had to explain it at length – now I point to them).

Dunning Kruger Effect

The gist of it is that the acumen necessary to be talented is the same acumen necessary to judge whether or not you are. If you aren’t talented, you also aren’t blessed with the ability to recognize that. Someone else would have to inform you of it. But in medicine no one does. You are protected from figuring it out. The people who record the data are writing charts that are novels in which they are the heroes, and that is the basis for all the information the rest of us, and they themselves, have.

Patient advocates keep trying to educate and guide patients as though knowing enough to make patients safe. They come up with lists of questions to ask doctors and nurses in order to make patients more proactive. How would that have worked for the patients getting metal on metal hip replacements for the decades during which they did. No matter how many question you asked, no doctor was going to tell you about the toxic levels of cobalt that were going to end up in your blood stream. It was not in their interest to know about that themselves. so they didn't.

Self interest governs perception

No one has the most important information necessary for patients to make informed decisions in medicine. A simple cost benefit analysis requires knowing the success rate. No one in medicine records success rates. No one outside of it does either.

The 4.8% of physicians who are responsible for more than half of all med mal suits are known about enough to have gotten them into the National Practitioners Data Bank because they are the inept ones who do not have good enough social skills to persuade their patients that things would have been much worse if not for the excellent care they received. So patients complain about them and sue them. The most dangerous physicians in the country do have good social skills. Injured patients do not file suits and grievances about them. They spread their great reputations. Patient advocates know only about the great reputations, not the injuries.

Small Data

The low hanging fruit, in terms of how it could be discovered, wouldn’t require big data. Anyone watching the patient community to see where patients with certain preconditions get better and where they get worse could get a handle on this in a few years, but no one does that. We don’t even know where the most patients get infected and that is one of the harder things to cover up.

The CDC was aware that, even in the closely monitored world of the ICU, deaths caused by infection often are listed as something else. To find out how this could be the CDC monitored an ICU for a while to determine which patients had died from infection while the cause of death was listed something else. They then went to the physicians who entered the causes of death to ask why. Sometimes physicians had been told by a supervisor to list it as a different cause. Sometimes it was a problem with the software. The software would accept infection as the cause only if the physician could identify what caused the infection, which is like telling a police officer that the deceased cannot be listed as “murdered” unless the officer can identify who stabbed him to death.

Even the vocabulary they use skews perspections and therefore the information collected, like harm being called an event and anything going wrong being referred to as an error (see The Word Error).

Self interest in medicine is so powerful that even the software and the vocabulary skew the data in ways favorable to health care and unfavorable to patients.

Articles get written defending all this by health care professionals saying that it would do no good to advertise their every mistake to the patient community. The Robert Wood Johnson Foundation has a grant available for figuring out how to make patients more confident in physicians. Patients could become more confident if they had accurate data about doctors' every mistake so that patient advocates and the patient community could tell the difference. Currently every doctor must be approached as being one of the most dangerous ones because any one of them might be when you have no way of knowing which are and which are not.

Currently patients cannot even determine when the risk of seeking treatment is too great to make it worth seeking treatment in the first place.

What patient ever hears anything other than to have a doctor check it out? The majority of conditions patients get checked out cannot be improved by treatment. Yet 75% of office visits end with a prescription. Most of those prescriptions cannot possibly offer a benefit, but they do build up resistances and produce side effects. When the condition heals, patients assume it was the treatment and develop an unwarranted faith in medicine. Unwarranted faith is dangerous for patients.

Whether to seek treatment in the first place is the first decision every patient must make and patients and patient safety advocates have faith, but not the information necessary to make an informed decision.

Of course patient advocates whose salaries come from health care entities in the end advocate for those health care entities, but even advocates without that conflict of interest can talk only in general terms about statistics and risks. We cannot point to a doctor and say that that specific doctor has been groping adolescent girls for fifteen years so don’t take your daughter to him (a specific case in my community). We cannot tell you the identity of the surgeon I learned about from a member of the board of directors of hospital chain who injured one patient after the other year after year as lawsuits and grievances piled up behind him. The board member had gone throughout the hospital imploring doctors and administrators to do something about it, but no one would. Primary care phsycians and specialists continued to send patients into his damaging care. That is the norm. And it is not acceptable.

A doctor one time argued with me telling me this: “Two boys grow up together, go to the same schools, get the same degrees, and in the end get the same medical licenses. One of them is talented and the other is not. The one who is not talented cannot help that he is not talented. It is not his fault. He does not deserve to be punished.” In other words, inept physicians deserve to keep their careers no matter what the cost to patients. That is not the perspective patients would have if they knew which doctor was untalented.

But the attitude in medicine is that they deserve to earn their livings at our expense. I’m sure you’ve heard someone in medicine say, “The only thing a patient needs to know is that the physician is licensed.” One time I created a list of myths believed in medicine. Could one be more self-serving than that one?

I didn’t start out to advocate for specific patients. My goal was to figure out how to make it so that they would not get injured in the first place. Along the way I figured out how to get iatrogenic injuries diagnosed. Word of that spread on the internet and desperate injured patients began calling me. 30 or 40 calls a week was common, and none of them lasted less than 15 minutes – half an hour was not unusual. This went on for years. The first thing I would tell them was to get their records. Routinely they were shocked to find that there was no record of their injuries, not even at the offices of the other doctors they went to trying to get treatment for the injuries. Those other doctors didn’t even make an accurate record of the reason for the office visit. What would be recorded was things like, “Patient seemed confused. I couldn’t understand what the complaint was.” Anything but an honest record of the complaint and a diagnosis of the injury.

Electronic records made it so that there no longer was anything injured patients could do to get diagnosed. I made that clear online and the calls stopped eventually. Yet somehow the general public, and most patient advocates continue to remain unaware of how routinely records in medicine are inaccurate in the first place or later change or disappear.

My nephew took his young son to Children’s Hospital in Cincinnati, a well-respected hospital. His son had hurt his arm. They thought it might be fractured. It turned out to be a complete break. It was set and put in a cast. The boy was in pain as they left the hospital and continued to be in pain day and night for the next two weeks. So they took him back. At the hospital they found that the bone had been set wrong and they were going to have to do it over. They asked where it had been set originally. My nephew’s wife told them it had been set there at Children’s Hospital. There was no record of that. Health care personnell argued with them about it and got angry at my nephew and his wife and son for insisting that it had set there at Children's Hospital. When I was told about it, I said that is the routine. When things go wrong in medicine records change or disappear.

What kinds of things can a patient advocate do for a patient? Instill wariness? Inspire enough skepticism to motivate more inquisitiveness? Explain that when physicians say the operation is done dozens of times, if not hundreds of times, per day across the country with a 99% success rate, besides having no accurate data behind it, that says nothing about this particular surgeon, this particular surgical team, or this particular facility. I once had a surgeon claim to me a high success rate for a surgical procedure about which surgeons in a different area of expertise said that a 30% success rate was more realistic. It can be rare for anyone in medicine to say something like that. But if you talk to enough of them enough times under enough different circumstances, sometimes the time can be right. Just not enough of the time for any patient advocate to figure out what patient advocates need to know in order to make patients as safe.

We don't even have an information about it when some health care professional is groping adolescent girls without either the police or the state medical board or anyone else doing anything in response to screaming adolescent girls and their parents year after year (see http://patient-safety.com/kashyap.htm). We don't know which health care professionals routinely are under the influence without anyone in charge doing anything about complaints about that, even at the highest levels in medicine (see http://patient-safety.com/malakoff.htm).

One thing it would be nice for some patient advocates to do is to develop a relationship with some Mennonites or Christian Scientists or any other group that doesn’t use medicine and watch how they fare without it. Then compare that to patients who do seek care. Especially with elder care. If you have gone through end of life with senior citizens who refused ever to see a doctor for the last 20 years of their lives, and also gone through end of life with people who did . . . the difference is so stark that you could make an argument for having witnessed that experience to be the first thing required before being allowed to call themselves patient advocates.

Everyone else is skimming information off the top of what already has been put through the filter of the way health care wants to see itself. You should see what senior years are like for people who don’t see it that way and opt out. We really need to gather the information necessary to know when to and when not to see treatment. Currently, no one has it. And that is the first thing with which patient advocates need to help patients.

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Why would someone become an advocate?

(See also Gloria Black on this site)

Sometimes there is something a patient advocate can do other than vainly try to advise individual patients.

Jason Maude was a money manager in London until his daughter Isabel, at age 3, came down with a disease that her doctors failed to diagnose correctly. She had chickenpox coupled with a necrotizing fascitis, a flesh-eating infection. By the time they finally got the diagnosis right, so much of her flesh had been eaten that 14 years later she still was having plastic surgery.

Mr. Maude said that his daughter's doctors were so stuck in anchoring bias, in this case their diagnosis of chicken pox, that they did not take into account all of her symptoms - high fever, vomiting, and skin rash.

According to the Institute of Medicine, diagnostic mistakes account for about 15 percent of the errors that injure patients. Mr. Maude felt that his daughter could have been helped if they simply had had a computer program into which to enter her symptoms. So he created such a program himself and named it Isabel. It is a diagnostic checklist now used by doctors around the country to make sure that they haven't forgotten anything.

I'm impressed and grateful to him, but I wish someone like him once in a while would put similar effort into making it so that patients have the information necessary to know.

Complacent attitudes about bad medicine

Caregivers move on. Injured patients and the people who care about them cannot. Patients' lives can be so ruined by the inadequacies of caregivers and their practices that patients devote their lives to trying to protect future patients from falling victim to the same problems. Isn't protecting others from danger a normal human response? Some think that it is a duty. Except in medicine where usually they dismiss injured patients as frivolous cranks with axes to grind, tell them to be better sports, to get therapists, take the therapists' pills and move on.

The injured patients I talk to tell me that this continues to be the case. Everyone in medicine to whom injured patients talk tells them that they have no responsiblity to future patients, that their only responsibility is to get themselves well and so to get therapists, take happy pills and move on.

Is it too early to diagnose this as a system-wide, self-serving anchoring bias?