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Hope After Loss: A Father Calls on the Next Generation to Improve Health Care

By IHI Open School | Wednesday, March 9, 2016

John T. James story Alex

John T. James, Ph.D. was the chief toxicologist for the National Aeronautics and Space Administration (NASA) in Houston, Texas, until his retirement in 2014. He recently spoke to an IHI Open School Chapter as a nationally recognized advocate for patient safety and quality improvement in health care — after the death of his son, Alex. (Caption: The James family at 14,260 feet above sea level on Mt. Evans in Colorado. John is at left and Alex is in the center.)

My son was born after my wife had three miscarriages. Alex was an energetic, curious little boy who went through a long phase of asking me, “Why, Daddy?” It forced me to become creative with my answers, but there was always another “why” waiting in my son’s mind.

Alex grew into an athletic young man with a passion for playing the baritone. In his last year of high school, he followed in my footsteps and became a runner, soon beating me in races and greeting me at the finish line with a happy smile and the words, “Good race, Dad.” Just before he turned 18, he became a computer science major at Baylor University. After the events of September 11, 2001, he decided to join ROTC at Baylor and serve in the Air Force after graduation.

A call that changed lives

On September 15, 2002, a call to my home in Houston changed my life forever. It was late on a Sunday evening, and it came from Dr. Jones in Waco. He said that Alex had collapsed while running. Alex had collapsed in a similar incident a month earlier, but recovered on his own. This time, he was down for some time, and the paramedics had to shock his heart three times to restart it. He was in a deep, unresponsive coma. I drove three hours through the night to be at my son’s bedside.

Alex never recovered from his deep coma. Three days after I drove to see him, Alex died. Words cannot capture the grief experienced by those of us who were closest to Alex — his Mama and me, his little sister, and his much younger little brother. Our faith community and many friends held us in their hearts as we struggled through the process of burying our firstborn son and brother.

What had gone wrong? After his first collapse, Alex was hospitalized for five days. He had various cardiac evaluations: numerous electrocardiograms, a cardiac ultrasound, an exercise stress test, and a cardiac MRI. He was also given a cardiac catheterization, which caused a painful hematoma, and an electrophysiology test, which led him to bleed from his groin. During his hospital follow-up visit five days after discharge, his doctor had given him a clean bill of health.

A series of errors

Since there was the possibility of a genetic cause of his death, I asked for his records. I received a quarter inch-thick pile at first, until I pressed for his complete record, which was three inches thick. As I examined his records and studied cardiology literature, I discovered that his cardiologists had failed him.

After his first collapse, Alex had three types of heart arrhythmia and low potassium. Two years earlier, a guideline from the National Council on Potassium in Clinical Practice called for potassium replacement in such patients. He never received potassium replacement, even though I had told his lead cardiologist about his low potassium. (I did not know enough at the time to connect low potassium with heart arrhythmia.)

His cardiologists had also missed a diagnosis of acquired long QT syndrome, a treatable heart rhythm condition that sometimes requires patients to avoid exercise. On a scale that suggests likely diagnosis for a score of 4 points or higher, Alex scored 5.5 points.

A communication error was also apparent to me as I pieced together the records. No one warned Alex not to run after the hospitalization after his first collapse. His written discharge instructions specified only that he not drive for 24 hours. There was no record of anyone warning him not to run when he had his follow-up visit, so he didn’t realize he shouldn’t have resumed running after his groin wounds healed. This was a catastrophic oversight.

In the spring after my son died, I learned of another major mistake. A radiologist at the hospital where my son received treatment got in touch with me. After we exchanged a number of emails, he told me Alex’s cardiac MRI was done incorrectly because the technicians had not been trained on new software for the machine. Alex was never told this (I know because I was there), and this information was critical because the cardiac MRI was to be performed before any invasive testing.

To be blunt, my son was deceived into signing consent forms for his cardiac catheterization and electrophysiology test. If his cardiologists had only recognized his need for potassium replacement, neither test would have been needed. They should have at least repeated his cardiac MRI with technicians who were properly trained to do the test.

A new calling

The discovery of these errors led me to a new calling in patient safety. I wrote A Sea of Broken Hearts (2007), a book that describes the poor quality of care my son received, the lack of accountability for the system’s failings, and the solution I propose: a genuine, national patient bill of rights. The goal would be to protect patients like the laws that protect workers subject to exploitation by powerful employers. To improve patient safety, we must level the playing field between patient and provider.

My journey has included publication of a review in the Journal of Patient Safety in 2013, in which I estimate that more than 400,000 lives are significantly shortened each year by suboptimal hospital care. In 2014, a Senate subcommittee invited me to testify about patient safety. In 2015, I co-edited a book called The Truth about Big Medicine, in which authors from many backgrounds — physicians, nurses, researchers, and change leaders — wrote chapters that explored the root causes of our failed health care industry.

Meeting like-minded people has helped me deal with my grief and champion changes in health care. Many of these people have also lost children to poor quality care. But another group has been young medical and nursing students.

Recently, I had the opportunity to talk to the IHI Open School Chapter at Wayne State University Medical School in Detroit. I told the story of what happened to my son and suggested ways to fix the system to make doctors, nurses, and patients happier. I ended by noting that I’m hopeful the next generation can fix the broken health care industry my generation has created.

If my son were still alive, he would ask, “Why is it broken, Daddy?” And I would say, “It is mostly selfishness and greed, my son. But sit down, because there is much more.”

John T. James originally shared his story in a presentation to an IHI Open School Chapter at Wayne State University in Detroit, Michigan. He was invited to speak by Chapter Leader Kelsea Anderson, who shares her thoughts on his story below.

A responsibility to prioritize safety: Open School Chapter Leader Kelsea Anderson responds

The Wayne State University School of Medicine IHI Open School Chapter recently integrated a patient safety curriculum into the first-year schedule, called Freshman Patient Safety Education Day. As the leader of this project, I was searching for an articulate patient safety advocate to share a powerful personal experience and ideas about how to improve patient safety.

When Dr. James emailed me his story, I was moved by the immense impact that medical errors had on his family. I felt respect and admiration for how he used his family’s story to teach others about how a series of preventable events can lead to tragedy. Dr. James’s presentation was poignant and thought-provoking. He challenged us to consider how our interactions with patients can drastically impact health outcomes.

As first and second year medical students who are busy memorizing anatomy and learning pathophysiology, we can sometimes forget why we so strongly desired a career in medicine. Dr. James’s emotional presentation was a reminder of not only the importance of our future role but also our responsibility to prioritize patient safety and quality care.

As medical students, we have an obligation to speak up when we see a compromise in patient care, or an inadvertent lapse. We also need to make the time to educate ourselves and our peers on the principles of patient safety and methods to reduce preventable errors. Finally, we need to ensure that we are able to communicate and work with a team of health care professionals to provide the highest quality of patient care. It is our job to be innovators in our health care system, to seek opportunities for improvement, and implement solutions.

Dr. James’ story touched our hearts and our minds and certainly reminded us that as physicians in training we have a duty to advocate for patients to ensure the highest quality of care.

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