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Sunday, April 5, 2009

A Sea of Broken Hearts: Fatal errors in a young athlete’s medical treatment

Dr. John James tells the heart-breaking story of his son's medical treatment:

I lost my 19-year old son several years ago in Texas due to multiple medical errors. He had collapsed while running, self-recovered, but was taken by ambulance to a hospital in his college town. There cardiologists evaluated him for 5 days and could not find any cause of his collapse. They delegated his followup to a physician in training in family medicine, she gave him a clean bill of health, and two weeks later he collapsed and died while running.

There were several catastrophic medical errors. First his cardiologists failed to apply a national, widely published guideline for potassium replacement in a person with cardiac arrhythmias, they failed to make an obvious diagnosis of acquired long QT syndrome, and they failed to warn him properly that running would be hazardous to his life. They wrote in the medical record that they warned him against running just after they gave him a second dose of Versed, a drug widely used as a sedative and known to cause amnesia. His discharge summary gave the only written instruction: do not drive for 24 hours.

I have written a book called "A Sea of Broken Hearts" that chronicles my son's botched care, the cardiologists' clumsy tampering with evidence in the medical record, and why we need a national patient bill of rights.

Dr. James' Advice: What should I have done differently? First, I had an intuition that his college-town hospital and especially the cardiologist assigned to his case were in over their head. I sensed this when his cardiologist was not interested in me getting my son's previous electrocardiogram that the Air Force had done a few months before. I should have followed my intuition.

I was not aware of how easily one can be manipulated by fear. In my son's case we were told the woeful story of Pete Maravich who collapsed and died suddenly. At the time, we did not know what informed consent really ought to be, and so we were frightened into allowing invasive testing. In my book I give good (but not absolutely conclusive) evidence that the invasive testing set my son up for death. This was combined with Alex's untreated, severe potassium depletion.

 I should never have been so trusting. I should have asked to see the details of the results of every test that was done. This way I might have found out that the hospital had screwed up his cardiac MRI. I should also have demanded to see his medical records at least twice a day. I really did not know much cardiology at the time, but I might have seen the major change in his electrocardiogram that showed that three risk factors for sudden death had disappeared...temporarily. There is no evidence in the record that his cardiologists ever looked at this second electrocardiogram.

As Julia Hallisey DDS wrote in her book "The Empowered Patient": never trust your heart to a single cardiologist; get a second opinion. I would add: make certain it is an independent second opinion rendered without knowledge of the first opinion.

Read about the organization Dr. James has launched, Patient Safety America.

Thanks to Dr. James, a patient safety hero, for forming a nonprofit organization to help others, and writing his son's painful story.

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