Does Medicine Have a Wall of Silence?

On May 30, 2019, the New York Times ran an important front-page story about North Carolina Children's Hospital.

Apparently, for many years, pediatric cardiologists who worked there noted that children with congenital heart problems were dying at higher-than-expected rates after cardiac surgery. All nine pediatric cardiologists were concerned about the quality of the program's performance. Several decided to refer their patients to other hospitals.

The pediatric cardiologists asked the hospital leadership for information regarding the mortality statistics for the children's cardiac surgery program. But the hospital (run by UNC Health Care) was not excited about providing any data.

Most pediatric cardiac surgical programs (about 75%) release their mortality data publicly. The mortality rates are typically risk-adjusted. Although the adjustments are not perfect, they account for mortality rates being higher for sicker patients. When risk-adjusted mortality rates are inexplicably high, it is a sign of a potential problem.

But the North Carolina Children's Hospital was reluctant to release its mortality statistics for the pediatric cardiac surgery program to anyone. When the data finally became known, the mortality rate was higher than nearly all other similar institutions. The hospital administrators did not even want to tell their own physicians.

Typically, with complex medical procedures, outcomes are strongly correlated with volume. That means that if a program does more procedures, it has more expertise, the healthcare team has more experience working together -- and as a result, patients have better results. Larger programs often have better equipment and more personnel. Sadly, the pediatric surgery program at North Carolina Children's Hospital was a low-volume center.

These low-volume centers are often problematic. The Times cited Dr. Carl Backer, former president of the Congenital Heart Surgeons' Society: "We don't have to build new hospitals. We don't have to build new ICUs. We just need to move patients to more appropriate centers."

He wants low-volume centers with poor results to be closed. That makes a great deal of sense. But if that were to happen, hospitals such as North Carolina Children's Hospital would lose revenue.

Nothing distresses a hospital administrator more than the loss of revenue. It threatens the job security of hospital administrators. So they are inclined to maintain revenue-generating programs, even if they have poor results.

And above all, they are highly reluctant to acknowledge that a problem exists -- even when it is quite serious. They are certainly not inclined to tell patients or their families.

Is this an example of the famous "white coat wall of silence"?

The "white coat wall of silence" resembles the "blue wall of silence" purportedly held by some police departments. Their shared principle is that insiders do not tell outsiders about the misdeeds of colleagues.

But this is not really what happened in North Carolina.

The pediatric cardiologists collectively shared their concerns about the quality of care in the pediatric surgical program in a letter sent to the leadership of North Carolina Children's Hospital. In response, UNC Health Care claimed it had conducted a "thorough internal investigation" of the concerns described in the letter, and "criticism of the program was found to be unsubstantiated."

Was UNC Health Care concerned about losing lives? I imagine so. But the administrators were most concerned about losing revenues.

Dr. Kevin Kelly, the physician who held the top administrative job at North Carolina Children's Hospital, made his position quite clear. According to the Times, Kelly said, "All I get to do is manage money." And he added: "Because that's all I can do."

Actually, hospital administrators often do more than that. They are adept at reminding those involved (particularly those who are raising concerns) about what is at stake. Dr. Kelly told the pediatric cardiologists who had expressed concern that performing fewer surgeries could hurt revenues and cost the cardiologists their own jobs.

The message was clear: Speak out at your own peril.

What should the hospital administrators have done?

Because the pediatric cardiac surgical program at UNC was a low-volume enterprise, UNC could have combined its program with a similar program at nearby Duke University, and together, that would have created a strong combined program. But that did not happen. Instead, investment in the program at UNC stalled. The hospital lost its best pediatric cardiac intensivists and its most experienced nurses. When that happens, it is often best to close the program.

Closure and consolidation of low-volume centers saves lives. As the New York Times noted, mortality rates for pediatric cardiac surgery in Sweden decreased 80% when low-volume programs were closed or consolidated. When similar measures were taken in the United Kingdom, mortality rates declined by more than 50%, despite an increase in case complexity.

But similar measures at consolidation have not taken place in the United States. Instead, our fragmented healthcare system is replete with a growing number of low-volume centers that do most of the complex and specialized procedures performed in this country. Poor outcomes at low-volume centers are not just an issue for pediatric cardiac surgery. It affects every complex procedure performed on any patient for any disease.

The risks of low-volume centers are exceptionally well-documented. A simple PubMed search identifies nearly a thousand papers, most of which showed a direct relationship between low volume and poor outcomes. Overwhelming evidence for poor outcomes at low-volume centers have been documented within the last year for three commonly performed cardiovascular procedures.^1,2,3

But the issue afflicts every medical discipline. Even a decade ago, an article in the AMA Journal of Ethics questioned whether it was ethical to send patients to low-volume hospitals for cancer surgery.

Centralization of care in high-quality high-volume centers is a no-brainer. Much of Europe's success in healthcare has been achieved by the closure of low-volume centers. Yet, despite the overwhelming evidence to support it, physicians who advocate for consolidation are unable to implement it.

Powerful forces stand in opposition to the closure of low-volume centers. Low-volume centers are attractive because they are geographically convenient; patients do not have to travel long distances for their care. Some insurance coverage is regionally-restricted, and families without resources are unable to access high-volume centers. Low-volume centers are often staffed by entrepreneurial physicians who don't want restrictions on their right to practice medicine. And their goals are often closely aligned with those of local political officials, who would like to imagine that low-volume programs can replicate the results at large medical centers. Perhaps most importantly, hospital administrators at low-volume centers do not wish to see their revenues slashed -- and their leadership positions eliminated.

So the problem of decentralized medicine and low-volume centers is getting worse, not better. To an increasing degree, a larger and larger proportion of specialized procedures in the United States are being done at low-volume centers.

And no one is telling the American public.

With few exceptions, patients are not being told that mortality rates are lower and outcomes are better at a distant site. Undoubtedly, some families might still choose to stay locally -- either for convenience, emotional support, or finances -- even if they are made aware of the higher risks. But in truth, most patients cared for at low-volume centers are just never told the facts, and thus, they have no ability to make a truly informed choice.

What can physicians do? Obviously, one of them was the direct source of the New York Times article. And in response to the Times story, North Carolina's secretary of health opened an investigation of North Carolina Children's Hospital. The sad part: this occurred more than 3-4 years after physicians became aware of the problem in pediatric cardiac surgery.

Medicine in the United States has profound problems. The most expensive healthcare in the world delivers mediocre results. The public is aware of many of the issues, and they understand how the greed of insurance companies, the pharmaceutical and device industry, medical supply companies, and of healthcare professionals contributes to our current abysmal situation.

But few in the public are aware of the catastrophe of low-volume centers for specialized procedures -- even though the crisis is not a secret amongst physicians. And amazingly, it is probably the one part of our collective mess that can be most easily and rapidly fixed -- if only hospital and healthcare system administrators would allow it to happen.

There is a wall of silence in medicine. But those who keep the secret are not wearing loose-fitting white coats made of coarsely woven cotton, often in need of laundering. The conspirators typically wear sharply tailored dark suits, often made of Merino wool, cashmere, or silk. And the dry cleaners are very good at getting out the bloodstains.

References:

1. JACC Cardiovasc Interv 2018 Sep 10;11(17):1669-1679. doi: 10.1016/j.jcin.2018.06.044.

2. JACC Heart Fail 2017 Oct;5(10):691-699. doi: 10.1016/j.jchf.2017.05.011.

3. Am J Cardiol 2019 Apr 9. pii: S0002-9149(19)30402-3. doi: 10.1016/j.amjcard.2019.04.006.

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