Full Table of Contents
_______________
Abbreviated
Table of Contents
Home Page
Patient Safety
Silence vs
Safety
Silenced
White wall
of Silence
Silencing
Conflict Of
Interest
Psychology of
Providers
Subjectivity
Blacklisting
Nurse survey
Loyalty
Mobbing and
bullying
Trust Us
Defensive
documenting
Report Rate
Risk
managemnt
SOAP
Management
Hospitals
Crime in
medicine
Sexual Abuse
Liability
Limitations
Free Speech
for Patients
Exploitation
OSMB Medical
Boards
Mammography
solutions
Medical errors
Medical
Complaints
One number
Links
Injured patients who want to help and be heard, click here.
Thomas Jefferson said that given the choice between government without newspapers and newspapers without government, he would choose to have newspapers.
In medicine we have government without newspapers. Patients cannot find out what they need to know to make informed choices. No one in medicine records or reports the information patients need to know the most. So patients will have to.
Sub Prime Medicine
The sub prime mortgage debacle is a good example for understanding one of the reasons for the unacceptable number of unnecessary injuries, deaths and bankruptcies caused by medicine. Mortgage brokers had no skin in the game either. Brokers benefited from selling the mortgages no matter what the result for the consumer, no matter what the result for the payer and no matter what the result for the institution for which they worked. It's the same with doctors and nurses and others in medicine.
From time to time someone tries to apply in medicine management techniques borrowed from the airline industry. From time to time someone tries to introduce the airlines' Root Cause Analysis (RCA). Anytime someone suggests that is the answer, realize that person has no idea what is wrong in medicine. That person might have after his/her name the initials MD, RN and Phd and have 50 years of experience working in medicine, but has such a subjective, if not simply ignorant, perspective on the issue that the fundamental reasons for why it doesn't work in medicine have escaped that person.
Pilots go down with the plane if they don't learn from mistakes and learn to fly right. Mortgage brokers and health care professionals do not. Pilots want to know what went wrong. Doctors and nurses do not. Doctors and nurses want to be protected from liability when things go wrong. They not only don't want to know what went wrong. They don't want anyone else to know. They don't want anyone to be able to find out. They earn more money and prestige if no one knows. They want stellar reputations with no repercussions and no criticism. They not only don't report what goes wrong, they cover it up. They don't even report crimes committed against patients by caregivers. Not even assault and/or rape when witnessed personally. Not even murder (see Majors or Swango).
Psyched
But they believe that they do. Like the surgeons who view the world in ways that blind them to their poor success rates. The psychology of care giving is powerful for providers as well as patients. It is so strong that the people who cause more accidental death and injury than any other group still are the most trusted group in the country. They dispense treatments without having any idea about whether the treatments they dispense are as good as other treatments that are available. They also dispense treatments that they know are not as good as other treatments when they can make more money on the worse ones. The treatments on which they can make money are the ones they sell without referring patients for better treatments even when their own treatments are crippling (see profitable treatment rather than good treatment).
The Well Being of Patients
They keep saying that the well being of patients is their first priority. I could write pages about how it is not, and I have elsewhere on this site. But just on the surface, does anyone think that other people will manage your affairs with the same inspiration and dedication that you will manage your own? Will someone else raise your children with the same love you will? Will someone else be as careful about your mortgage and home buying decisions? Life doesn't work that way. No one else will protect your health as well as you will if you are able to find out how.
In medicine the people in charge of your health don't even bother to learn which of the treatments available are best. 45,000 women have been treated for beast cancer with Mammosite, and no one has bothered to look to see whether that works better than other treatments that are available. If it were your cancer, or your daughter's cancer, how hard would you work to find out? Ronald A Williams, a top executive in the medical insurance industry has been through that. His mother had breast cancer. Even with all of his access and connections, he says he is unsure whether she got the best care. Even he cannot find out.
The people running medicine are not pilots. They are brokers with no skin the game. They not only don't report adverse events, they don't even believe they should. Their conflict of interest is too great for them to understand it. They never are going to provide the information necessary to give patients a light in the medical darkness. They won't even shine a light that would enable themselves to be able to make the best decisions for their own friends and families (like the shoulder operator). And they are unaware of why they should.
Here is what you can do about it
Adverse events are the most important things to know to be informed consumers of health care. The positive information is trumpeted. They put that in brochures and advertisements and press releases. They also put out disinformation to protect themselves at the expense of patients (as in this link). What patients need in order to be safe is the fog horn or the lighthouse that warns about the dangers. Medicine provides the opposite of that. Medicine hides its problems. But patients can provide warnings to each other. They can give each other an important amount of what they need to know to chart a course through medicine - if they are allowed to.
On one level this would be proficiency testing through crowd sourcing. But medicine makes it too injurious for patients to do that.
Unequal Protection
Here
is a major obstacle in the way - the more negative the information, the more
likely it is you will be sued for sharing it. Patients learn this quickly and
become silent. When Angie's List asks people to rate health care providers, the
negative information they receive is about trivial things. Nothing
important gets reported because patients learn quickly how medicine punishes
them for reporting negative information.
That is what government must fix. The rest will take care of itself if government protects the people who report. This is not a budget item and another agency being created (as much as there needs to be an agency representing patients). This is legislating protection for patients to enable them to create ways to report and make use of that which is reported. If you have a nine-year-old with diabetes, you should be able to do a search on the Internet and collect what has been said about doctors in your area, by other parents with such children, about the various doctors to whom they went. Currently, parents cannot report anything but positive information without retaliation by doctors. What if the therapy recommended is to lose weight? Has the doctor's care ever succeeded in helping someone lose weight? If not, why spend years disrupting your family's life following a course of treatment that never works? And if you do, why can no one else learn from your experience?
Especially Malfeasance
In my community there was a physician who sexually imposed on young women. Individually they had gone to the police and the state medical board and the press, but no one would do anything. Finally, there were so many victims in the community that they bumped into each other socially. Why do there have to be so many victims over so many years that they accidentally find each other before they can form a group and do something? Why could not the first girl abused post that fact on the internet? One single report about one single event will be a blip to which no one will pay attention, except the errant physician who could issue a denial and change his behavior. If he didn't change his behavior, dozens of reports on him would enable patients to protect themselves.
Physicians truly are paranoid about their reputations. They value them more highly than they value the lives of patients. And they are in denial about that.
Currently, if a physician rapes you he is protected by liability limitations in many communities, but there is no community in which there is a limit on the amount for which the physician can you merely for talking about it. That is unequal protection and might be a violation of the 14th amendment. (If you think I'm confusing criminal and civil law, you are a lawyer who needs to click here).
The Plural of Anecdote is Data
Patients need equal protection. Currently physicians are allowed to speak to each other about patients in ways that can be physically harmful to patients. The moment an adverse event takes place, health care professionals begin a cover up. Your primary care physician will call the next physician you have been scheduled to see and tell that physician not to diagnose your injuries because those diagnoses could be used as evidence in a suit or grievance. The community of physicians will brand the injured patient as the problem, with no thought about how the patient got injured, and make it impossible for the patient even to get treatment, let alone justice. That can have serious health consequences for the patient.
The patient cannot sue those doctors for conspiring, for making false statements, for defaming, or anything else. But those doctors can sue the patient merely for complaining about the original injury, or for complaining about how they conspired to silence the patient. The patient cannot even warn other patients about the aftermath.
"If we have a censorship which stops us offending anyone,
the truth may be concealed in the surrounding blur."
- John Milton, “Areopagitica”
When we give liability limitations to doctors to protect them from the patients they injure, what do patients get in return? Nothing. It already has been arranged so that there is no place else for patients to take their complaints except to court. Now they take that away too.
It is more important for patients to have liability limitations than it is for providers to have it. Providers want limitations to protect their reputations. Patients need liability limitations to protect their lives. Without them patients cannot share the information that can reduce the rate at which they get injured and killed and bankrupted. With liability limitations patients could begin to exert the market pressure that drives cost down and quality up.
At one time in the USA you couldn't say anything negative about politicians without getting sued. But 200 years ago it became clear that citizens could not run the country if they could not talk about their politicians. So politicians were defined as "public officials," which gives us some protection from being sued for speaking about them (and protects them when they speak about each other). Who is more important to your well being, the members of your zoning board or the members of the surgical team that is going to cut you open? We need to do something that is the equivalent of defining health care professionals as "public officials" so that we can report what we experience in medicine without being sued.
Gagged
We also need legislation that recognizes that information about medicine is so important that it cannot be allowed to be silenced with gag orders. Isn't that a large part of what makes lawsuits expensive? Buying our silence? If they couldn't buy silence would they pay as much to their victims to settle cases? There must be an end to gag orders in settlement agreements. The more negative the information, the more important it is to know. If one kind of plane keeps crashing, is the reputation of the airline more important than the lives of the passengers? Doesn't the passengers' right to know exceed the right of the airline to protect its reputation so it can keep selling tickets to a dangerous plane?
In medicine they have rationalizations for this. One is that "you have to be there for the next patient." Does the airline have to be there for the next passenger? When a physician is injuring people, do we want the physician to be there for the next patient more than we want the patients to be safe? Under current circumstances no one, least of all the medical community, knows who is safe and who is not. We could know if we could talk.
Whether or not they get liability limitations, patients should get liability limitations and the elimination of gag orders.
Scientific, Peer Reviewed Non-Data
People in medicine keep saying that collecting data from the random posts of patients would not be scientific. Ever notice how many observational studies doctors publish? Talk about unscientific. But that aside, if they want to collect data and report it scientifically, we will be delighted. But they collect only 2% of what we need to know. Unscientific data is better than no data. Especially when it comes from patients. Patients do not have a vested interest like health care professionals do. Patients report more information, and report it more accurately, than health care professionals when given an opportunity to (see medical reporting).
A nurse who didn't know who I was told me about a surgeon in her unit everyone tried to steer patients away from because he is so bad. She told me about people he had butchered. She and her colleagues might be trying to steer patients away from him, but that surgeon is earning a living by doing surgery on someone. And she never reported him. She never even thought she should. No one in medicine does. That is true for problems worse than incompetence. When two dozen teenage girls are groped by a physician, no one in medicine reports it. It doesn't appear in scientific studies. The only people who report such things are the victims. Currently victims can find no one who will listen. Just look at the cases (examples). Patients need a place to report. Patients need the freedom to warn each other.
People in medicine also object that patients might say something about them that is not true. Physicians say things about patients that are not true everyday. Why is that okay? The minute there is an adverse event the cover up and the demonization of the victim begins. The victim of an adverse event seeks treatment but cannot get it because physicians call each other to prevent accurate diagnosis of the injuries in order to protect each other from the patient they label as crazy and who appears to them to be out to wantonly ruin some innocent caregivers career. They label the patient as a crank and prevent the patient from getting care as though protecting a providers reputation is worth further injuring a patient.
When patients warn each other about physicians, it does not cause physical harm. When physicians warn each other about patients, it can cause disability or even death. The stakes are higher for patients. They at least should have equal rights.
Patient Reports are more Reliable
than Hospital Reports
We know two men who were disabled on operating tables. The records created by the surgeons in both cases say that the operations were perfect with no complications. These were life-ruining events, but nowhere in medicine is there any record of either of these outcomes. How many other patients of those surgeons have had their lives ruined? No one knows. That is typical of how information is collected in medicine. No one knows who or what is good or bad in medicine. They pretend they do. They believe they do, but they don't know the negative information because so little of it is recorded or acknowledged. Some individual patients know the negative information, but they are not allowed to share it. We need the right to share it. We need to start texting and blogging and twittering and recording, in every public way possible, what we experience in medicine. People under a certain age already are in the habit of doing that in other aspects of their lives. We need to protect them and plug them in to a place to do it with their health care.
Small acts by many providers
with a cumulative damage to patients that is enormous
Marion Nestle, author of Food Politics and author of Pet Food Politics, was researching the melamine issue when pet food and farm animal feed was contaminated with it and pets were dying or being made sick. There was concern about how much of it might be trickling into the human food supply. She said that the FDA and the pet food manufacturers and the distributors of the ingredients and the American College of Veterinary Nutrition and everyone else involved in the debacle behaved badly, except for the bloggers. Everyone other than bloggers protected companies at the expense of pets. She said that the bloggers and other citizens involved in food advocacy movements exhibited all the hallmarks of democracy at its best: of the people, by the people and for the people. For human health care we need bloggers who have access to information and enough protection to share it like they can when animals are the issue.
75% of physicians work not in large institutions but in small offices of ten physicians or fewer. They don't report each other. They don't report themselves. Who else is present to report them but patients?
Informed Consumers
That kind of information at last can give patients some of the information necessary to begin making informed cost-benefit analyses about their healthcare - the kind that creates a competitive marketplace that drives costs down and quality up. That information can begin to keep patients from being pawns blindly doing whatever they are told. Our health care providers are killing hundreds of thousands of us unnecessarily each year, and maiming millions more. In the decade during which they have known they are doing that, the health care industry has made no improvement in those numbers. They never have and they never will. We have to do it ourselves. It starts with our knowing the truth about what goes on in medicine so that we can find our way to safety.
There is reason to believe that health care professionals believe that they are doing the right thing when they don't report negative information - apparently believing that the evidence paints an inaccurate picture. They believe in themselves so much that they also don't believe the statistics resulting from studies about patient safety because the statistics do not agree with their view of their personal experience. In fact, the statistics do. Health care professionals have a misplaced faith in their own perspective. The way they interpret their experience and filter the information that comes to them is self-serving. We are not used to thinking of health care providers as people living in a fog of self-serving delusion. But they are and we need to be aware of it.
What your doctor
wants more than to heal you
is to believe he/she healed you
No law or regulation or initiative or plea or promise or re-education can get people to report adverse events when they believe that there are none. Someone else is going to have to report the information. Health care workers never will. Patients are going to have to.
But . . . you know how they keep saying that the reporting done by doctors needs to be kept confidential in order to encourage more of it? Why doesn't anyone ever say that about patient reporting? The medical community withdraws care, and worse, from patients who complain. Patients are inhibited and intimidated, when they are not directly punished for it. Patients need someplace confidential to report too, someplace where what they report can be hidden from the view of the health care professionals in question, in order to encourage more of it.
“Give me the
liberty to know, to utter, and to argue freely according to conscience, above
all liberties.”
- John Milton, “Areopagitica”
* * *
State Patients Boards
This brings us to part two. There needs to be a patient-centric institution to call, not just to which to report, but to ask for help. It should be an institution that keeps on top of the patients' position in medicine.
Doctors have the AMA. Nurses have nursing boards. Anesthesiologists have guilds. Hospitals have associations. Patients have nothing like that. When health care goes from one legislator's door to the next in Congress explaining their position, there is no one to follow them around explaining the position of patients. When a nurse's association backs a candidate for office, there is no patient's organization that can do the same.
There are many patient safety sites and organizations, but none of them are official institutions charged with the duty and the authority to advocate for patients before the government and the press and the healthcare industry.
The leaders of the past were insufficient,
the leaders of the present are unprepared.
- Charles Bukowski
State after state passes liability limitations for physicians and there is no one to knock on the doors of legislators to make them aware of the patients' view on that or similar issues. When medicine feels inclined to get government to create another law or regulation unfriendly to patients, there needs to be an official representative of patients to speak for them in the matter.
Patients need an organization with a phone number that journalists can call to get the patient's view. Currently journalists cannot do much more than call three doctors and accept whatever self-serving paradigm it suits healthcare to believe this time. When they call injured patients, invariably they reach someone with limited knowledge and no experience in articulating concerns to the press.
The organization should advocate for patients not just before the government and the press, but also by being there when patients become victims of adverse events. They need to be the institution that patients can telephone to reach professionals who are on their side when they need to find out things like how to get iatrogenic injuries treated (usually no one in healthcare will help them) and to explain things like the fact that they can file suits against "unknown John Does" in order to get subpoena power to get records when a hospital will neither identify their caregivers nor give them their records.
Hospitals might be required to identify your caregivers, but when they don't want to, they just don't. There is no penalty for breaking the law. There is no one who enforces such laws. Patients are stymied and defeated and not only cannot get their injuries treated, but cannot even get their records. Currently there is nowhere for them to go for help in surviving that. And that's only the beginning of the problems faced by injured patients.
The organization also needs to have a legal response team. 97% of patients with legitimate grievances cannot get lawyers. Their lives are no less ruined than the 3% who can. It's not that they all need to get a day in court or to get a settlement. But they do need legal help, in part just to know what they can say and do without getting sued, and how they can use the law to prevent medicine from shutting them down. Medicine has risk management departments dedicated to, and experienced at, defeating patients. Few lawyers have the expertise or the will to figure out how to help patients in the face of that. The few who do are willing to represent only 3% of the patients, not the overall community of patients, and so work only to get cash, not sunshine, not change, not protection for future patients.
You cannot be your own watchdog.
That's just common sense.
The patients' board also needs to have a phone number to call to register complaints and post other data collected by patients. It makes no sense to keep putting that information into the hands of organizations run by and for healthcare professionals. Those organizations have agendas that compete with the interests of patients. On their boards they have doctors and nurses, not injured patients, and the way they handle complaints shows that (see OSMB).
Even efforts like the
Department of Health and Human Service's "Hospital Compare" site (www.hospitalcompare.hhs.gov
[see my page about it]),
although it
is welcomed and appreciated, is not going to help patients overcome the
obstacles that prevent injured
patients from getting treatment and/or justice. For one thing, they can collect only the data that
people in healthcare choose to report.
Some things cannot easily be hidden, but lots of things can. And HHS is
the government. They cannot lobby the government for patients. They are the ones
who are influenced by
lobbies. One of those lobbies needs to be the institution suggested here, the organization that follows
legislative proposals and advocates for the interests of patients.
Healthcare professionals are less motivated to fix problems when they earn money by having those problems. Especially when they conveniently choose to believe the problems are rare or nonexistent. So patients need to know better. Patients need to spend less time shouting at healthcare to reduce errors and more time creating the means to stay out of the way of errors. As long as patients pay to be exposed to, and damaged by, errors, health care professionals will be happy to keep things as they are. To protect ourselves we need freedom of speech for patients and institutional support that is on our side.
"It is difficult to get a man to understand something
when his salary depends upon his not understanding it."
-Upton Sinclair
For democracy to exist, citizens cannot merely be passive recipients of services, but must be responsible actors defining and solving problems, looking out not only for their own interest, but also for the common good. All the authorities in medicine believe in a paternalistic dictatorial system that at most tries to govern medicine by the imposition of regulations from above, usually with no actual repercussions for violating the regulations, although once in a great while with mandates for punishments for non-compliance. They have no appreciation for markets or for knowledgeable consumers and freedom and how informed consumers can put providers in the position of having to serve them better in order to survive themselves. The result is that medicine is dangerous and ruinously expensive and best avoided if at all possible.
Organizing/Uniting Patients
Injured patients who have learned all these lessons from personal experience sometimes want to unite with other injured patients to bring about change. Here's the next lesson they learn: uniting through the internet produces little more than argument about what the problems are and what the solutions might be. Networks are poor at the kind of strategic thinking and goal setting that humans in the real world do through centralized leadership and authority structures.
At the University of Michigan two researchers brought groups of people together face to face and had them play a difficult cooperation game. They they organized other groups and had them communicate electronically. The face-to-face groups thrived. The electronic groups fractured and struggled.
That is only one study. And it is the kind of study that is extremely susceptible to the biases of the people conducting them. But, so far, real world experience indicates that even when agreement is reached, internet relationships are weak. They rarely translate into the kind of human bonds that result in the kinds of efforts that produce change.
Maybe someday someone will figure out how to fix that, but at this time it appears that there is going to have to be a uniting of patients in the real world. It is going to have to start with some shared understandings, perhaps initially through a speaker series where patients will sit in rooms with other patients in the real world where they can shake hands with people with whom they find points of agreement and an interest in working together. The speaker series that enables this might do so by slowly spreading a unifying understanding of fundamentals like how dangerous and expensive and self-serving medicine is and why. It is going to have to help people understand why health care professionals like it the way it is and how they manage not to see what it is and why. The patient community is going to have to gain an inkling of how it got this way and why health care professionals will do everything for patients except arrange for medicine to be effective, safe and affordable.
These understandings are going to have to grow in settings where real life connections with people can result in real world meetings to build organizational structures in support of change, not just emails and websites. Lunch counters in the south probably still would be segregated if they had tried to change it exclusively through the internet. The people who sat at those counters refusing to leave until they had been served had been trained in the real world for it, and they sat there with people with whom they had solid long-term bonds in the real world, not just net-friends.
The internet is crucial for gathering the information necessary to make any of this possible (and also useful to those who want to make it impossible - Mexican crime gangs use social networking sites to gather information about their victims). It is why we now can do something about these problems, but that is the same kind of help that the internet would be in building a house. In the end, people have to join together in the real world to lift shingles onto the roof. Otherwise, the internet produces only slacktivism, a passivism induced by arguing that never progresses to political engagement.
Someone has to be in charge. Someone has to have the authority to prevent resources being squandered by those who would put the kitchen 30 yards from the foundation. There has to be a chain of command that can prevent some faction from turning what would have been the front door into a horizontal design element hanging from a telephone wire over the street. If you have read accounts of communal house building in the 1960s, you know that can happen when there is no organizational structure and no established line of authority.
Unfortunately, there is almost no one who understands the problems with enough lucidity to be in charge without causing the equivalent of ordering that the front door be hung from a telephone wire. We do not yet have the body of literature and the shared understandings to enable sane action. We still get most of our information from people who have vested interests in keeping the unnecessary death rate right where it is. We need to find the injured patients who are willing to tell us the stories that will help us build a shared understanding and a shared vocabulary as a foundation for what needs to be done.
If a speakers series is the chosen beginning for this, the speeches do not have to be made to the already committed. More random audiences will find patients with stories, patients who did not know there was anything they could do, but now can help just by telling their stories. The facebook page "One Thousand Injured Patients" (http://tiny.cc/BENEd) really does need to have a thousand injured patients on it before we will be ready to talk.
----------
Health care professionals find ways to disregard, if not disbelieve, in the damage they or colleagues have done and/or are doing in order to maintain self-perceptions that are self-comforting in the guise of being in the best interests of patients. Whatever is in the best interests of themselves comes to appear to them to be in the best interests of patients. That's why in medicine there are no adequate mechanisms established to address wrongs committed against patients, and no adequate mechanisms that would allow patients to determine where medicine is the most dangerous. Instead, there is the opposite. They keep insisting that the well being of patients is their highest priority. If it were, these problems would be addressed. As it is they are not even recognized.
Everyone in medicine believes him or herself to be among the few good ones in medicine. How can anyone be considered to be one of the good ones when practicing the routines and habits that not only do not offer simple criminal justice to victims, but instead make sure no such thing can exist? If an intentionally injured patient tries to complain, other health care workers can teach the patient a lesson by further intentionally injuring the patient and there isn't even anyone to tell about it - at least not anyone who is not on the side of the people who injured the patient.
It is time to stop imagining public health professionals to be objective, selfless saints with both feet on the ground. The are self-interested humans with vested interests mired in group-think and herd behavior. The way that herd thinks and behaves is unnecessarily killing thousands of patient every month and disabling many times more. It doesn't have to be that way.