by Marshall Allen
ProPublica, Sept. 18, 2012, 1:30 p.m.

Medical care has its own code and culture, which often does not put patients first, according to Dr. Marty Makary, a cancer surgeon and researcher at Johns Hopkins School of Medicine and the School of Public Health. And providers who speak against that code can pay a heavy price.

Makary’s new book, “Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care,” explores why patient harm persists in the medical system and what can be done about it.

PP: What led you to write “Unaccountable [1]”?

Dr. Makary: The debates about health care reform frustrated me because our complex system of health care and culture of medicine were reduced to simple sound bites. People pushed the idea that changing the payment system would solve the problems. But I observed every day what I see to be the main driver of health care costs: the massive variation in the quality of care – across the country, within cities, and even within good hospitals.

I saw this variation in quality and the alarmingly high error rates, and it hit me that unless we can be open and honest that up to 30 percent of health care is unnecessary, and that 1 in 4 hospital patients are harmed by a mistake, then we’re just going to be continuing to beat our heads against a wall trying to pay for a broken health care system, instead of fixing it.

PP: What type of problems did you observe?

Dr. Makary: I saw cases where a patient was not told about a minimally invasive way of doing a particular surgery because of physician preference or training, and the doctor would just hope that he wouldn’t find out. If that patient were empowered by talking to the right people, or by doing his own research, he would be able to get superior care. It’s no wonder that about a third of all second opinions about surgery yield different opinions.

Medical mistakes are the fifth- or sixth-most common cause of death in the United States, depending on the measure. But few people look at it that way. That’s because we haven’t been honest about it in the past. And we have hospitals that fire doctors and nurses when they speak up.There was a nurse recently fired in Florida for complaining about a doctor doing unnecessary procedures, a report substantiated by an internal report gotten by The New York Times. A cardiologist in Wisconsin was fired for pointing out that EKGs were misread more than 25 percent of the time. We need to change the culture of medicine.

There is New England Journal of Medicine-level data that suggests that almost half of care is not compliant with the evidence. In my own field of cancer surgery, I have seen patients treated in ways that are not supported with evidence.In the case of radiation treatment for pancreatic cancer, there is evidence from large cooperatives overseas that there is a harm to radiation. Many studies show no evidence of benefit to radiation, and yet patients are routinely offered radiation treatment and have the expectation that it’s going to help them do better. I see PET scans offered routinely – an expensive test – that has never been shown to benefit diagnosing pancreatic cancer.

PP: Why do these problems persist?

Dr. Makary: There’s been a corporatization of health care where we have a system where we tell the hospitals to fill the beds, so the hospital administrators fill the beds. We tell the doctors to do more procedures, so they do more procedures. For patients, we create a nation that more care is better care, and so they demand more care. Everyone is doing their job. The problem is we have good people working in a bad system.

The desire and reflex of docs to offer something to patients, even when there’s not much more else they can offer. There’s a strong financial incentive. Doctor groups pay for new equipment that they purchase on borrowed money.

We are also evaluated by the number of “value units” at the end of each fiscal quarter. Our management will sit down with us and say your work units are down or up and in order for you to receive a large bonus you need to increase the number of operations you do. There is increasing pressure on doctors to see more patients, prescribe more medications and do more procedures. This is something that the public is shocked about when they learned about it.

Medicine was not always this way. When I was growing up we had a great community hospital that had lots of community trust. It was almost a charitable institution. The head of the hospital was the head doctor. Now health care looks different. If you have an issue and want to deal with it, it’s like trying to appeal a cell phone bill. Patient rights are limited, and the doctors themselves get frustrated by the growing divide between management and frontline providers.

We have a system where the frontline providers – doctors, nurses, secretaries, technicians, support staff – are part of a corporate culture. They don’t feel that they own the medical culture. They feel like tenants where the management is their landlord. That translates, in our research, to more mistakes, more overtreatment and more waste. If we’re going to get serious about reducing health care costs and improving patient safety, we need to get serious about replacing workplace culture in modern medicine. At about half of hospitals we’ve surveyed, most of the employees said they would not go to that same hospital for their own care.

PP: Can you point us to any bright spots?

Dr. Makary: In the book I try to balance every shocking story with a positive new trend in health care or an exciting success story. In medicine now we have some organizations that post complication rates online and discuss them. And younger doctors are changing the culture. The new generation comes from a different mindset. They have little tolerance for secrecy and demand transparency.

One doctor I found provides a video of each colonoscopy to the patient, to ensure quality control and to serve as a permanent record. He did research to show recording procedures improves quality by 30 to 40 percent. There’s a campaign at Harvard and a few other hospitals called Open Notes [2], which makes the notes in health records immediately available for the patient to see and even edit. The Society of Thoracic Surgeons partnered with Consumer Reports [3]magazine so patients can look up important metrics of hospital performance.

At Johns Hopkins we have gone through a metamorphosis. We’ve made mistakes in some care that have been tragedies. Based on these experiences, the hospital developed a strong research and practical interest in advancing patient safety. I feel fortunate to have Peter Pronovost as a research partner and an institution like Johns Hopkins, where the leadership has praised my book.

PP: What type of transparency should patients demand from doctors and hospitals?

Dr. Makary: Patients should be able to know all of their treatment options, including active surveillance or watchful waiting as legitimate options, as opposed to treatment, surgery or medication. All of these options should be disclosed to patients to get at the problem of overtreatment and undertreatment.

Patients should know about a mistake as soon as it happens. When I make a medical mistake and quickly disclose it to patients, they appreciate it. I can look back almost every year and think of a CT ordered on the wrong patient, or a lab test misinterpreted, or a delay in diagnosis because of a communication failure with my team. Patients are hungry for real honesty in their medical care.

Patients should have easy access to their medical records, which is not true at many hospitals. Sometimes patients are expected to pay $200 or $300 for their records.

Hospitals should report complication rates in a way that’s risk-adjusted, meaningful and user-friendly to patients. They should report how many of each particular condition they see in a year and readmission rates, infection rates and other simple metrics of performance. Patients don’t have to walk in blind.

PP: What are the biggest barriers to increasing transparency?

Dr. Makary: Complacency and blind trust are the greatest barriers. The complacency is embodied in the traditions of medicine. Medicine has its own culture, values, vocabulary and justice system. Part of that culture is that we only listen to ourselves.There’s a tremendous amount of appropriate respect for tradition and hierarchy, like in the military. But now that the knowledge has expanded, so there are so many services offered by a hospital that you have to ask why care isn’t more coordinated. We’ve had little science behind how to implement good care safety and coordinate care safely. That’s the greatest challenge now in the system, asking the questions of how we can cut the giant costs of health care, which is funding unnecessary overtreatment, medical mistakes.

And the blind trust is the blind trust of the public. It’s not their fault. They have no choice but to walk into an emergency room and get treated by the first doctor on call. But the treatment is too often based on that individual’s practice rather than what’s the best evidence.

The exciting thing is that as organizations provide meaningful information to consumers, patients can do meaningful research and reward places that do well and not seek care at places that don’t perform well and have a closed door culture. The general public’s frustration with the hassles and lack of coordination in health care now have people hungry for common-sense and large-scale reforms. We’re seeing that now with orgs stepping up and addressing quality. Health care costs are not going to reigned by different ways of financing our system, but by making it more transparent so that patients can fix the system. I’m convinced that the government is not going to fix health care. And doctors are not going to fix health care. It’s going to be the patients.