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Patients and family members who have experienced diagnostic error share their stories of misdignosis, the impact on their lives, barriers and proposed strategies for an accurate and timely diagnosis.
Helen Haskell and her son, Lewis Blackman
Lewis was a healthy 15-year-old when we took him to the hospital for a procedure to correct a structural defect of the chest wall, pectus excavatum. While the surgery was hardly minor, we did not appreciate that it had a risk-benefit calculus that might not be appropriate for a child with a relatively mild defect (as Lewis’s was). It was not the surgery per se from which our son died, however, but the pain control regimen that accompanied it. Residents and nurses failed for over 30 hours to recognize signs of a perforated ulcer brought on by the NSAID painkiller ketorolac, which Lewis was given as an opioid-sparing adjunct to his epidural narcotics.
Read the rest of Helen's story here.
A Story from Martine Ehrenclou
January of 2010 initiated me into the life of a chronic pain patient. For sixteen months I plunged into a diagnosis journey that brought with it ten misdiagnoses by eleven respected physicians, fifteen procedures and tests, twenty-two medications and crushing pelvic pain.
In the end I stumbled upon my own diagnosis in a New York Times article, In Women, Hernias May Be Hidden Agony. As I read about a woman with chronic lower abdominal pain exactly like mine, I raced to the phone to find the surgeon and hernia specialist who had cured her. I found that surgeon all right, and luckily for me she was located at a highly respected teaching hospital in my city. She accurately diagnosed me with a thorough exam and high-resolution dynamic MRI and performed three-hour surgery to repair my inguinal hernia with a nerve passing through the hole and a muscle tear in my previous C-section site with nerves passing through the tears. I’ve been pain free for over two years. I am immensely grateful to her.
Read more on Martine's story here.
Nowhere along Rory’s journey, from boy with a bellyache on Thursday to gravely ill boy on Friday night, did anyone act on strong indications that he might be fighting for his life. Critical information gathered by his family doctor and during his first visit to NYU Langone was not used, was not at hand or was not viewed as important when decisions were made about his care, records show.
Read the article, featured in the NY Times, here.
A Story from Teresa and Joe Graedon
Diagnostic errors are common and have seemed intractable for decades. Although time pressure is often cited as a contributor to this problem, overconfidence on the part of the diagnostician may also play a role. Successful strategies for reducing error in the diagnostic process should include patients and families in innovative ways. Changing the existing paradigm of patients responding passively to one of patients participating actively has the potential to assist in achieving greater diagnostic accuracy. Providers should welcome patients’ online research into their symptoms, succinct summaries of their course of illness and questions about the differential diagnoses that might be applicable. Systematic methods for following up after the initial diagnosis are essential for verifying accuracy as well as providing excellent patient care.
Read more on the Graedons' story here.
A Story from Erika Hanson Brown
In the year 2000, Erika Hanson Brown wasn’t interested in seeing doctors. But when her husband encouraged her to see a physician because she didn’t look well, she relented. Her doctor performed a full exam and sent her out the door, claiming she was perfectly healthy.
Because of increasing fatigue and feeling unwell, Erika again saw her primary care physician who did blood work that showed she was anemic. Months later, after taking prescribed iron supplements, Erika could barely get out of bed. In addition to her anemia and growing fatigue, she suffered from shortness of breath, weight loss, weakness, restless-leg syndrome, and a sharp pain in her right side.
In early 2002 she had a colonoscopy. The gastroenterologist told her that he was not able to complete the colonoscopy because her colon was difficult to view. But still, he said, she was fine. She asked him why she felt so awful. His explanation came in the form of a diagnosis of irritable bowel syndrome (IBS.) Like her primary care physician, he told Erika that she would just need to learn to manage her symptoms.
The better part of Erika’s time was now spent in bed because of the debilitating fatigue. Erika went back to her primary care physician who performed a barium x-ray. Her results were “unremarkable,” the physician told her. It later transpired that the unremarkable report belonged to another person.
Two years after Erika’s first visit, her doctor ordered a second colonoscopy with a different GI doctor. This gastroenterologist discovered a tumor in her colon and scheduled emergency surgery. A surgeon removed her spleen and a large portion of her colon plus surrounding lymph nodes. Erika was told that she had stage 3 colorectal cancer and needed six months of chemotherapy.
Erika said, ”My treatment process took yet another couple of years from my life, but it did give me back my life … I felt so much better after recovery from surgery that it was hard to imagine that chemo could make me feel worse. But I had a rough go ahead of me.” Adding to the burden of her rigorous chemotherapy was the fact that Erika had to declare medical bankruptcy and file for divorce.
When Erika Hanson Brown recovered, she vowed to create a network of support and resources for those afflicted with colorectal cancer. She brought that vision to life with “COLONTOWN,” a nonprofit organization that is now allied in partnership with the Chris4Life Colon Cancer Foundation, based in Vienna, VA. Erika describes COLONTOWN as “the face and place for colorectal cancer survivorship – with real survivors.”
Erika now says, “During the first 7 years [of recovery] I talked almost incessantly about cancer; I talked about my cancer experience, others’ cancer, the eventual cure for cancer, while I participated in almost any cancer-related activity … Today I almost need to be prompted to talk about the experience because, I realize, I just don’t think about it. Hurray! I’m a normal human being again – not terribly worried about cancer. Isn’t this progress?”
A Story from Carolyn Thomas
Carolyn was out for her early morning power walk when she suddenly experienced crushing chest pain, nausea, sweating and pain radiating down her left arm. She immediately went to the emergency room of her local hospital.
Because Carolyn was experiencing classic heart attack symptoms, she was given standard cardiac tests, including E.K.G, a treadmill stress test and blood work. She was discharged from the emergency department with a diagnosis of acid reflux. Upon her release, the E.D. physician said to her, “You’re in the right age bracket for acid reflux. It’s not your heart.”
Profoundly embarrassed and apologetic that she had taken up so much of the medical provider’s time, she left and and took the prescribed antacids to reduce her symptoms. However, Carolyn’s symptoms returned repeatedly over the next two weeks. Because she trusted the physician who reassured her that she simply had acid reflux or GERD, Carolyn brushed off the symptoms and did her best to carry on despite the pain and debilitating fatigue.
By the time Carolyn could barely walk because of her symptoms, she returned to the emergency department of the hospital and was immediately admitted and diagnosed with “significant heart disease” and what is known as a “widow maker” heart attack. One of her arteries was 95 percent blocked. She was ushered into surgery for an emergency angioplasty and had a stent implanted in her left anterior coronary artery.
During her hospitalization, she asked the cardiologist assigned to her case why she hadn’t been diagnosed two weeks ago when the emergency physician had seen her. Her cardiologist said, “Because you’re a woman.”
Carolyn later learned while attending the WomenHeart Science & Leadership Symposium at Mayo Clinic that women her age and younger are seven times more likely to be misdiagnosed in mid-heart attack and sent home from the emergency department, compared to male counterparts presenting with identical symptoms. She received community activism training at Mayo Clinic for a select group of women heart disease survivors.
Carolyn realized that she had to do something to educate women about heart disease and launched Heart Sisters. It now has over 2.8 million views from 190 countries. Her blog was named one of the top 10 online influencers by HealthLine.
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