“I Just Wish Someone Would Have Said Something”

By

Leonard Zwelling

This is a quote from a patient’s mother. The patient was operated on to repair a congenital heart defect at North Carolina Children’s Hospital, part of the UNC system in Chapel Hill. It’s all reported in a long investigative report in The New York Times on May 30.

https://www.nytimes.com/interactive/2019/05/30/us/children-heart-surgery-cardiac.html?action=click&module=Top%20Stories&pgtype=Homepage

The article by Ellen Gabler is about the quality of pediatric cardiac care, especially its surgical aspect, in a major hospital that is supposed to be specializing in caring for very sick kids. To sum up the lengthy article, not only were the results of the surgeries poor, the pediatric cardiologists knew they had a problem and either didn’t speak up adequately or their voiced concerns were not taken seriously enough by the higher ups.

Thus , the title of the blog. And this is a theme to which this blog has returned again and again. When those in positions of power and responsibility do not act once a problem has come to light or when technical experts on the ground make upper management aware of problems and are not taken seriously, disaster strikes. This is what happened in 1986 when the Challenger exploded; this is what happened in 2011 when the new president of MD Anderson was named; and this is what has happened in the United States under the presidency of Donald Trump. (I understand that I have a lot of readers who disagree with this, but the coarsening of American discourse and its reduction to 280 character aliquots is enough to qualify Mr. Trump in the pantheon with Millard Fillmore, James Buchanan, and Franklin Pierce.)

The problem is out there for all to see. No matter how much an alarm is sounded, those with the power to make a difference don’t act or worse deny the existence of the problem. (As Mr. Mueller told us, the Russians are really out to get us.) Think Al Gore and climate change.

What is so desperately sad about the UNC Hospital situation is that many of the cardiologists knew they had a problem with the skill of the surgeon doing the cases sent to him, but no one in a position of authority chose to do anything until finally that surgeon was eased out, another surgeon was hired and mortality rates dropped.

Reading the article is a great lesson in a case study of how things go wrong and keep going wrong because no one will speak up or draw a line in the sand and say “enough.”

Many of the blogs I have written speak to this issue whether the topic is MD Anderson, big pharma, academic medicine or the federal government. The key and essential point is checks and balances and the willingness of good people to speak up when they see injustice or harm being perpetrated on those who cannot know any better. That was the case here.

Another point made in the article is how a simple shift could have improved the problem. If Duke Hospital and UNC had combined their pediatric cardiology programs, particularly pediatric cardiac surgery, it is likely that the increased experience gained by those in the combined program would serve to lower mortality rates. I often wonder how many pediatric cancer programs Houston really needs and what benefit would be derived in pooling the resources of the ones within a few blocks of one another in the Texas Medical Center.

American medicine, as the article points out, is quite distinct in the OECD (mostly Europe) world for not centralizing specialized care in an effort to improve the quality of that care by increasing the experience of those delivering it.

And what is MD Anderson doing but plopping itself down in communities around the country to compete with cancer care delivery systems already in place. Is that the best way to deliver high quality cancer care? Or would serving as the nexus of community-wide programs to create the best of the best in the region be a better way to go? Of course, how well did that go in Orlando?

The American Health Care experiment goes on. In Chapel Hill, in Durham, in Houston. It’s an adventure for sure, but one with consequences to the patients. Especially the ones who really need fiduciary advocates to make sure they get the best care when only the best will maximize the chances of a good outcome.

Read the article. It’s frightening.

Leonard Zwelling