A Sea of Broken Hearts: What We Can Learn from Alex’s Death
Submitted by John T. James, PhD, medical, board-certified scientist, who, despite his knowledge and expertise, lost his son to the dysfunction of American healthcare.
Although here are many capable caregivers in our healthcare industry, the story of my 19-year old son’s uninformed and unethical medical care in his college town stands as a “poster child” for the ills of this industry.
At the time I had excellent healthcare insurance, so when Alex collapsed (and self-recovered) while running, he was taken to a medical center in his college town and subjected to 5 days of testing, much of it invasive. The cardiologists involved were being paid directly for the services they could sell, and they proved to be excellent salesmen, using fear and deception to persuade him to consent to a cardiac catheterization and an electrophysiology test (both expensive). After all the testing they could not find anything wrong (so they said) and he was given a clean bill of health during a hospital follow up visit.
A few days later he returned to running and about 2 ½ weeks after this final visit he collapsed and died while running. I was present throughout his hospital evaluation and made the huge mistake of trusting his cardiologists.
I am a medical scientist with a Ph.D. in pathology and have board certification in toxicology. Once I was able to obtain his complete medical records and read-up on cardiology, I was appalled at the mistakes his cardiologists had made.
Here is a list of the most serious:
1) They failed to apply a widely-published medical guideline for potassium replacement in patients with low potassium and heart arrhythmias
2) they failed to make an obvious diagnosis of acquired long QT syndrome
3) his cardiac MRI was not performed properly because the technicians had not been trained on new software
4) his cardiologists knew and wrote in the medical record that he should not resume running but they never told Alex this. His written instructions were that he should not drive for 24 hours!
An inspection of my son’s electrocardiograms proves that potassium replacement would have saved his life by controlling three risk factors he had for sudden cardiac death (PVCs, prolonged QT interval, and high dispersion of QT intervals). He was never given potassium. His cardiologists did find time to place false statements in his medical records after he died, but they did so in such a clumsy way that it is obvious that the statements are false. They asserted that he had been offered and refused an electroencephalogram and a pacemaker. Neither was offered.
No cardiologist would come forward and admit that mistakes were made. The Texas Medical Board retained secret cardiologists who determined that my son’s care met or exceeded the standard of care in Texas. The Board made it clear to me that they did not care that Alex was deceived by his cardiologists into giving “informed” consent: “So what if his cardiologists did not tell him his cardiac MRI was botched, but could have been repeated with trained people.”
My son’s healthcare illustrates the following problems:
1) physicians (especially cardiologists) often do not know what they are doing because there is no effective continuing medical education in Texas (and most other states)
2) physicians being paid directly for their salesmanship of expensive tests the patient does not need
3) the view by medical professionals that informed consent is no more than an annoyance
4) communication failures between doctors and between doctors and patients
5) a cult of secrecy and deception when a patient is harmed, and
6) lack of accountability for medical errors.
I have written the full story of what happened to Alex, including much additional information about his poor-quality care, the steps used to cover it up, and how I know these occurred. I also wrote about the root causes of such errors and what we can do to keep them from happening so frequently. My book is called “A Sea of Broken Hearts-Patient Rights in a Dangerous, Profit Driven Healthcare System.”
The last chapter is a draft patient bill of rights that we all need to protect us from the healthcare industry. It is based on the vision of the Institute of Medicine in their 2001 book called “Crossing the Quality Chasm.”
It’s too late for Alex, but maybe it’s not too late for someone you love.
John T. James, Ph.D