When Getting It Wrong Could Cost You Your Life Savings or Your Life

With perhaps more than 12 million diagnostic errors annually in the U.S., we need to be our own medical advocates

Greg Carroll,

AARP Experience Counts

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En español

Published November 16, 2023

a doctor explains something to a patient

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Did you ever watch the show House, starring Hugh Laurie as Dr. Gregory House? He had the world’s worst bedside manner, but he always (eventually) came up with the correct diagnosis to save a patient’s life. I bought every season on DVD because I loved the show.

It would be great if real life and medicine were like the show House. But it’s not.

In 2015, the National Academies of Sciences, Engineering, and Medicine released a report that said, “Errors can be harmful because they can prevent or delay appropriate treatment, lead to unnecessary or harmful treatment, or resulting in psychological or financial repercussions.” It added, “Improving the diagnostic process is not only possible but also represents a moral, professional, and public health imperative.”

What is medical misdiagnosis?

Misdiagnosis is when a medical professional incorrectly diagnoses an illness or a medical condition, leading to inaccurate treatment. This can cause additional, if not catastrophic, costs to the patient, delay proper treatment and worsen the condition. Misdiagnosis also occurs when physicians don’t diagnose anything, assuring you that all is well.

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An apparent misdiagnosis touched my life when, a couple of years ago, a close family member was diagnosed with diabetes and given treatment for that condition. A year later, doctors found that pancreatic cancer had already spread to many organs and her brain. She was gone before Christmas.

The National Cancer Institute reports that in some people, diabetes can rapidly develop because of a problem in the pancreas, including pancreatic cancer. Pancreatic is the third leading cause of death from cancer in the United States. No screening test exists.

I’d love to say that medical misdiagnoses are rare, but the Society to Improve Diagnosis in Medicine states that in the U.S., more than 12 million diagnostic errors occur annually, with one in three causing serious patient harm.

However, a new study in BMJ Quality and Safety came out in July of this year. Its conclusion was similar. “Extrapolating to all diseases (including non-‘Big Three’ dangerous disease categories), we estimated total serious harms annually in the USA to be 795,000 (plausible range 598,000–1,023,000). Sensitivity analyses using more conservative assumptions estimated 549,000 serious harms.”

Dr. David Newman-Toker, a professor and director of neurology at the Johns Hopkins University School of Medicine, said in a speech that the most common misdiagnosed issues are vascular events, like stroke and heart attacks, infections and cancer. He added that about 30 percent of women were more likely to be misdiagnosed when presenting with stroke symptoms, and most misdiagnoses happen at the bedside.

Getting the wrong drugs

Prescription medications are another potential avenue for medical mistakes. The wrong dosage, the wrong medicine or medicine that has adverse reactions when combined with other medications can all negatively affect physical, mental and emotional well-being. In an article from expatnetwork.com, signs of an incorrect prescription include lack of improvement, unexplained side effects, and even inconsistent test results. The article stresses becoming familiar with the prescribing information on the medication insert (which may require a microscope to read).

Discussing insurance coverage with your physician is also a variable for ensuring you receive the proper medication. Sometimes, the correct drug costs more and insurance doesn’t cover it. Sometimes, the extravagant drug is no better than alternative therapies.

There is some great news on this front. With an air of science fiction about it, researchers in Turkey are using Artificial Intelligence (AI) to figure out how to avoid potential drug interactions for older patients who take five or more prescriptions simultaneously. Their study includes a database of interaction information for 430 of the most common drugs and chronic diseases in geriatrics. An AI-supported web application compares the specific medications a patient is taking to identify potential adverse effects and propose alternatives. In their study, the tool worked 60 times faster than manually trying to identify these same problems. In these days of an aging population, increased workloads for doctors and nurses and less time to care for their patients, a database like this could be a game changer.

Costs of misdiagnosis

The ensuing cost of medical misdiagnosis to the U.S. health care system may be as high as $100 billion per year, according to StatNews.com.

A National Library of Medicine (National Center for Biotechnology Information) article, “Medical Error Reduction and Prevention” by Thomas L. Rodziewicz, Benjamin Houseman, and John E. Hipskind from May of 2023 states, “Approximately 400,000 hospitalized patients experience some type of preventable harm each year. Depending on the study, medical errors account for over $4 billion per year. Medical errors cost approximately $20 billion a year.”

How to prepare for a medical exam

Those of us over 50 tend to see our doctors more often, going for colonoscopies, mammograms, bone density checks, eye exams, and the like. People over 65 see their doctors on average more than twice the number of times per year as adults aged 18-44, according to an AARP article entitled, “How Often Do You Really Need to Go to the Doctor?”

Those visits need to be as effective as possible. Paying attention to some of the most misdiagnosed health issues, especially if you have family medical histories, may save your life and life savings.

Newman-Toker offers three suggestions on how to reduce the chances of a medical misdiagnosis.

Come Prepared: Because of the lack of time doctors have to spend with each patient, give the doctor the “executive summary”— a quick summary of what’s going on with your health, a few key details of what conditions you had before the onset and a list of medications you are taking.
Ask Questions: By asking probing questions, you should get a sense if the doctor is looking at your problem sensibly. Challenge them with probing questions like: “Doctor, you said it is this one thing; is there anything else it could be?” or “What’s the worst you think this could be?” or “Why do you think it’s not that?” If you don’t get good answers, consult with another doctor.
Remain Vigilant: If your treatment is not working, consider that you may have the wrong diagnosis, not just the wrong treatment.

I’d like to add that you ensure the person most likely to go to the doctor or hospital with you has the “executive summary” in case you cannot give it yourself. This is usually a spouse or an adult child.

Ultimately, the person most responsible for your health is you. When your life and your life savings are on the line, be a persistent advocate for yourself.

Share your experience: Has a medical misdiagnosis affected your family? How did you manage it? Tell us your story in the comments.

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Greg Carroll started his career in marketing and advertising, writing ad copy for several small agencies and private companies after college. He spends his time writing policies, training courses and the occasional article for a federal agency newsletter. At some point, he hopes to get back to the novel he and a friend never finished writing a decade and a half ago.