It’s been over a year since my older sister Anna died, so I choke up less readily while speaking about it.  The raw anger is less, but the frustration of losing someone to a preventable medical mistake will always remain with me.   Anna was five years older than me, my only sister, and the one I often turned to for advice. We were close despite living 600+ miles apart.  She was smart and insightful; she was at ease in most social situations. I, on the other hand, was the nerdy kid sister who loved science, who became a physician in my early 40s.

In 2012, Anna’s world turned upside down when she was diagnosed with bone marrow failure (myelodysplastic syndrome) at 58.  This disease stemmed from her previous treatment for breast cancer. At the time of diagnosis, everything else in her life seemed to be going well.  She loved being a (single) mom; she had a wonderful job; and they had just adopted an adorable Lab. She actually felt great.

After testing showed she was fit to withstand the rigors of a transplant, including a thorough cardiac evaluation, she had a bone marrow transplant in early 2013 at a well-respected teaching hospital. Anna did fine initially. But, seven months after her transplant she began to have odd neurologic symptoms and five months after that, chest pain. When she told me about her chest pain, I told her she had to go to the ER.  Instead, she elected to ask her treating physician about her chest pain. He recommended antacids.

“Really, antacids?” This was the first of several missteps where her doctors improperly dealt with her chest pain. When I would ask Anna, she assured me that she was telling her physicians about her chest pain.  And, after her death and my reading of her full medical record, I know she did tell her doctors about her it.

When her chest pain persisted, another doctor said her nerve pain medicine was treating it — again never fully evaluating its root cause. She was hospitalized two months later for her neurologic symptoms. Anna continued to have intermittent chest pain and was increasingly short of breath. The teaching hospital physicians “treated” her chest pain with narcotics.  Seven days after admission, her physicians requested a cardiology consult. And, it then took another five days for the cardiologist to finally evaluate her.

I can’t even begin to fathom why it took days for her chest pain to be fully evaluated while she was an inpatient. And, until the cardiologist evaluated her, she was being given Oxycodone for her chest pain.

By then, she needed a coronary stent and was finally was put on all the correct cardiac medications. But it was too late — the damage was already done, she had a fatal cardiac arrhythmia days later. When I read her autopsy report which revealed she had been having “ongoing waves” of heart attacks, I was devastated.

In the days that followed, my shock turned into anger.   Convinced her death was likely preventable, I was driven to find the truth. After countless hours of reviewing all her medical records, I knew without a doubt: her death was preventable.

If it had not been for my dogged persistence, the providers at the teaching hospital would have chocked up her death to “long-standing cardiac disease,” which she did not have.  I kept raising questions and it became evident I was not going to go away. She did not have “long-standing cardiac disease.”  She died a preventable death due to delays in diagnosis of chest pain.

Clearly, as a physician, I have a huge advantage that most afflicted family members don’t: I understand medical records, how hospitals work, and the hierarchy in medicine. Even so, the road was difficult and at times overwhelming for me. But I was determined.

I returned to the teaching hospital that treated Anna, multiple times in fact, asking to hear about the changes being put in place to prevent more death like Anna’s.   You see, many of her medical notes were “cut and pasted” and contained outdated information. When I met with one of her attending doctors in the hospital conference room, he confessed that although he had not evaluated Anna, he had written an admission note on Anna as if he had. He explained it was because it was “late at night.” I asked another one of her doctors why he had not fully evaluated her chest pain. He said, “I would then have to refer out all my patients” [to cardiologists] for which I responded, “Sir, you could have been a hero.”

On September 22, 2015, the Institute of Medicine (IOM) released its report, “Improving Diagnosis in Health Care.”  This is the third report in the IOM Health Care Quality Initiatives, beginning with, “To Err is Human: Building a Safer Health System” and then “Crossing the Quality Chasm: A New Health System for the 21st Century.”

In this third study, the IOM reports that the data on diagnostic errors is “sparse,” but their best estimate is that “all of us will likely experience a meaningful diagnostic error in our lifetime.”  The report outlines eight goals to improve and reduce diagnostic errors. This will take: cultural shifts, education, teamwork, an error reporting system, changes in health care delivery, and funding. The “meaningful diagnostic error” for Anna was that none of her providers recognized her chest pain as a cardiac red flag until it was too late.

When will health care step up to this challenge? When will the public demand it?  When will you demand it?

Carol E. Gunn is a physician. She recently gave a TEDx talk, “Medical Errors: The Silent Killer in Medicine.” She can be reached on contacted on her self-titled site, Carol Gunn, MD.

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