Patient safety is one of the newest fields that you can you can get a masters degree in.
A traditional program is available through Northwestern University, or you can get an online degree through the University of Illinois. (Chicago is a really safe place!) I received my degree the hard way on the front lines of the American healthcare system. My real-life four-year graduate program included courses in:
- What to Do When the Hospital Overbills You $30,000
- Rebuilding Arms after Major Surgical Errors
- Surviving Deep MRSE Infections
- Medically Induced Bankruptcy
- The Joys of Arbitration
- Trying to Get a $3 Billion Orthopedic Device Manufacturer to Care
- Legal Malpractice and the Tort(ure) System
- Patient Safety Speaking Skills
- How to Pass Medical Legislation
- Leading a State Infection Reporting Committee
The program was intense, mostly self-taught and always very challenging. Students like me find out quickly that healthcare is a vast labyrinth of professional organizations, unwritten standards, frustrating bureaucracies, and ultra-complex technology. I learned new things every day but the really important lessons were:
I, like most patients, naively started the program with total blind faith in my Doctor/God. You worry about asking too many questions of this very busy, very important deity who is going to make your damaged arm like new. What I learned was that on a good day Doctor/Gods are just barely more talented than most patients. They are extremely poor listeners/communicators, they have only average memories, and due to their frantic lifestyle haven’t had time to read the latest research on your condition. Though they will never admit it, they desperately need our help.
Patients are accustomed to dealing with their very honest, very caring, very transparent family doctors. Sadly, when good care turns bad a totally different world emerges. “The Wall of Silence” is very real: honesty disappears, and the planet turns brutal. To survive in the world of Medically Induced Trauma patients must make themselves absolutely likeable, obsessively persistent, fearless, and be willing to devote most of their spare time to researching their care.
Every patient should understand the term “conservative treatment,” which is generally defined as “the very least amount of medicine that produces the highest probability of a good to excellent outcome.” Doctors don’t always prescribe the most conservative plan for your care. Sometimes they offer the most expedient treatment, or the most profitable treatment, or the latest high-tech treatment which they are dying to try out. Patients must always remember to ask multiple doctors, “What is the most conservative treatment plan for my condition?”
The Standard of Care
I, like most people, assumed that there was some huge volume of very technical books in every major university’s library that spells out in explicit detail the current state-of-the-art treatment plan for every known medical condition. Big surprise: it doesn’t exist and probably never will exist. I did learn at dinner one night with my last doctor that there are several “standards of care.” My doctor takes care of the Colorado Rockies and US ski team athletes. I remarked that it must be a really bad day when one of those athletes gets infected. He responded, “Oh, they never get infections.” “Impossible,” I replied. He then explained that the superstars don’t get scheduled for surgery unless the hospital has been infection-free for weeks. Stars go in first thing in the morning, and they triple-check that every medical detail is perfect. I found that there are at least three standards of care for any given procedure: the Superstar Standard, the everyday That’s How I Learned It in Medical School Standard, and the Absolute Least Care that Anyone Has Ever Documented Standard, which the malpractice defense attorneys present to juries. I will never understand the stack of letters from my hospital that clearly state that giving me a life-threatening infection met someone’s “standard of care.” Without detailed research you will never know what standard of care you are receiving.
Two hundred years ago, most people who were sick enough that their families would take them and the family treasure to see the doctor simply died. The few who did live were forever indebted to their Doctor/God. Today we expect them to be able to immediately diagnose and quickly cure every known problem, many of which are self-inflicted. Doctors appear fearless, but in reality they fully understand how extremely fragile human life is and know first-hand how the smallest mistakes can wipe out a beautiful life. Our system places total responsibility on the Doctor/God. He is responsible for the patient adhering to instructions, for every person’s performance in the operating room, even for faulty engineering and design of medical devices.
It is called the “captain of the ship doctrine.” Unfortunately medicine has become so complex that it overwhelms the captain’s abilities. One day I asked my last doctor how my first doctor could have lied to me for four and a half months. I will never forget his response. He said, “Kerry, we harm patients and lie about it every day! My colleagues call me all the time for advice on how to fix their mistakes. Most patients never figure it out.” The system is broken! Much like the complexity of flying an airliner the responsibility needs to be spread beyond the captain/doctor to the entire team, including the patient. My experience is that the very best care is when doctors seek the opinions of their peers before the treatment plan is implemented. The humble docs are by far the best docs.
As smart as doctors are, this one simple question stumped them every single time: “What will this surgery or device cost me?” I would even try to make it easier by limiting the question to, “Ignoring all the other players, what is your fee to conduct this surgery?” Hard to believe that guys who have their stock prices on their cell phones don’t know how much they are making every time they roll into the OR. A few weeks after surgery I would receive astounding statements from Aetna. Healthcare is the only business I know of that gets away with charging whatever the market will bear without ever disclosing the price to the consumer.
I analyzed my first detailed hospital bill and discovered that the stainless steel elbow hinge that they bolted to my arm cost over $50,000. A long letter to the hospital CEO resulted in an enlightening meeting with the hospital’s CFO. The apologetic CFO explained the mysteries of hospital bills to me. Hospitals basically take real costs and mark them up two ways. Major items for which they have negotiated rates with the insurance carriers are marked up 300%; the insurance companies cut them in half thus the hospital makes about 50% gross profit. Little items from Kleenex to miscellaneous orthopedic hardware are marked up 1,000%, which the insurance carriers again cut in half, reducing markup to about 400%. The blended combination of these two markups allows the hospital to make 10% to 12% net profit after deducting overhead and taxes. It is a very lucrative business. Sometimes, as in my case, the billing staff mistakenly enters items at 1,000% markup instead of 300% markup and insurance carriers pay the inflated bills. Every patient should always request detailed breakdowns and thoroughly review the charges. My work resulted in a refund check to Aetna of more than $30,000.
Sometimes systems evolve so quickly that their creators have to stop and totally redesign their pride and joy. Healthcare has reached that point. Reform isn’t enough; complete overhaul is in order. My overhaul plan would include:
Restoring Trust – The past three decades of burying mistakes have destroyed the public’s trust in healthcare. I agree with Don Berwick that complete and total disclosure is the only cure. Disclosure must include internal hospital investigations, peer reviews, operating room dictation tapes, and virtually any conversation or information associated with the patient’s care. Morally it is the right thing to do; secrecy causes immeasurable emotional harm to patients and families, and it is the only way that we will identify the true magnitude of the problem. A key component of disclosure/transparency is putting audio/video recording into operating rooms. Pretty astounding to think that our society spends lots of money recording motorists speeding and running stop lights but when they have your heart sitting on the table we rely on foggy human recollection. Don will probably disagree with me but the only way meaningful disclosure will happen is through very strong national legislation.
Accountability – I learned last year that “baby in the snow stories” are medical disasters that inspire legislation (sometimes good, sometimes bad). Healthcare has an abundance of “naked baby in the snow stories.” My friend Helen Haskell sends me at least three sad stories every day. A key way to reduce the number of tragedies and bad legislation is to create a nationwide system for licensing doctors. We must keep the incompetent doctors from jumping to another state and help them find alternative means of employment. Hand in hand with licensing should be a nationwide system of malpractice insurance for both hospitals and doctors. Both know that under total disclosure the number of errors we currently experience will bankrupt the system. Two things must happen. We must get the attorneys and the courts out of the system! The billions of dollars utterly wasted on attorneys’ fees must get distributed to victims. Secondly, victims must accept that just because your slightly above average very human doctor screws up, you don’t get to retire. We don’t go to court every time someone runs into our cars. It is insane that the only way to get compensated for medical errors in this country is to file a lawsuit.
The drug and medical device industry is especially troubling. Maybe someday I will understand the Supreme Court’s logic in letting pharmaceutical and medical device manufacturers make billions of dollars from the people their products help and then saddling the unlucky souls who are harmed with the full financial consequences of the loss. My alternative to preemption is simple:
- All drug and medical device clinical trials are conducted by independent third parties (a medical version of Consumers Union). Trials are paid for by the FDA with funds from the manufacturers.
- The FDA evaluates the data and the risk factors to predict the number of patients who might be harmed.
- The risk factor establishes a percentage of profits that are put aside in a government-administered fund to compensate victims or their families.
- After drugs and devices create a loss history, the risk factors are modified up or down to keep the fund solvent.
Imagine no attorneys, no class actions – just unfortunate people getting quick financial help so they can try to put their lives back together.
Infection Prevention – Please stop arguing about the percentage of infections that are not preventable! Can you picture fireman huddled outside a burning apartment building debating if they are going to be able to save 98% or maybe just 95% of the residents? Now is the time for extreme action. I truly believe that infections are not a scientific problem; they are a financial problem. Reducing infection rates from 1.5% to zero is going to take an enormous amount of money. Currently we pay healthcare $4 billion a year to treat infections, but are not willing to pay anything to prevent them. We have to change the paradigm to pay sizeable bonuses for every patient who doesn’t get infected and, conversely, make healthcare absorb the cost of treating those who do become infected. Extreme measures such as building entire patient wings to computer chip clean-room standards; excluding visitors; and testing every patient and healthcare worker every day will be required to get to zero.
Medical Research – In reading hundreds of studies from major medical journals I found that the vast majority are very short in duration and have very small numbers of cases. The two factors that drive this issue are severe lack of funding and the complete inability to collect very detailed case information from across the country. We must find a way to protect patient privacy and still get the information into very large databases so that researchers can truly establish a current standard of care.
Medical Education – I coined a term called “tripathy” meaning to simultaneously treat a patient’s physical, emotional, and spiritual needs. We must teach young doctors the lost arts of empathy and compassion. Detached concern simply does not work; it is fundamentally inhumane. Compassion will heal problems that evidence and science can never cure.
I didn’t get a diploma for my real-life masters program but I do have 42 inches of really cool zipper scars which are almost as meaningful. The caregivers I have met over the past four years are absolutely wonderful, but they are also extremely scared and profoundly hurting. They need our support and total commitment to overhaul the very broken system that they struggle with every day. As patients and fellow human beings we need to quit whining and demanding miracles and get involved in fixing the issues. Our survival depends on it.
Kerry O’Connell, December 2008