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You Have Likely Been the Victim of Diagnostic Mistakes

Diagnostic mistakes are surprisingly common. They can lead to disability or death. A new study identifies the most common conditions that are often missed.
Depressed doctor leaning against wall in hospital corridor

Americans are unforgiving when it comes to mistakes. If a bank teller cashed a check and gave you the wrong amount, you would not put up with it. If your auto mechanic misdiagnosed your car’s problem and charged you hundreds of dollars for a repair that didn’t work, you would complain bitterly. Why do we accept so many diagnostic mistakes from our health professionals without a word?

Pilots Gone Astray

Here’s an example of an unforgiving public when professionals make mistakes. On October 21, 2009, Northwest Airlines Flight 188 left San Diego for Minneapolis. For reasons that still remain somewhat mysterious the pilots overflew the airport by 150 miles. They landed in Minneapolis more than an hour late.

No one was injured and no one died because of this error. The pilots were humiliated in the media. The FAA revoked their pilot certificates and the National Transportation Safety Board instituted significant changes in procedures as a result of this screwup.

When Health Professionals Make Diagnostic Mistakes:

If physicians, nurse practitioners or physician assistants make errors, they can easily go undetected. Health professionals rarely get called out for diagnostic mistakes. Patients may not even realize something has gone wrong until it’s too late.

Researchers evaluating primary care visits estimate that about 5 percent of diagnoses in that setting are in error, affecting approximately 12 million adults each year (BMJ Quality and Safety, Sep. 2014). 

The researchers conclude:

“Based upon previous work, we estimate that about half of these errors could potentially be harmful.”

If you think 12 million is a large number, consider that this does not include diagnostic mistakes made in hospitals, specialty clinics or nursing homes. If people were actually counting errors, it is likely the number would be far greater.

Malpractice Claims and Diagnostic Mistakes:

Depending upon which study you read, you get either a depressing view or a horrifying view of health care harm. Recent research on settled malpractice claims concluded that 80,000 to 160,000 people suffer serious disability or death due to misdiagnosis each year (Diagnosis, Sept. 2019). About three-fourths of these grave mistakes involve one of the “big three:” cardiovascular conditions, infections or cancer.

These authors note in their discussion that no one really knows how many people are being harmed or killed by serious diagnostic mistakes in primary care settings.

Citing the BMJ Quality and Safety study, they state that it:

“…would translate to at least 4 million seriously harmed, including at least 1.7 million who died from diagnostic error.”

We grant you that that is the theoretical upper limit. The range for “serious misdiagnosis-related harms” is between 80,000 and 4 million. The reason the numbers are so varied is that no one is actually counting. The CDC does not include diagnostic mistakes on its list of their leading causes of death. Death certificates rarely, if ever, list cause of death as “diagnostic error” or “medical mistake.” 

If anyone were counting, diagnostic mistakes would be a leading cause of death in America. But unlike heart disease and cancer, there is no Institute of Diagnostic Mistakes. Politicians allocate billions of taxpayer funds to the National Cancer Institute, the National Heart, Lung, and Blood Institute, the National Institute on Alcohol Abuse and Alcoholism and the National Institute of Allergy and Infectious Diseases. But barely a drop in the bucket goes to preventing healthcare harm due to faulty diagnosis. 

Why Proper Diagnosis Matters!

When you see doctors for troublesome problems, you probably expect them to uncover the reasons for your symptoms. Accuracy matters, because undergoing treatment for the wrong condition won’t help and may do you harm.

Treatment delay could be deadly. In addition, you could be taking medicine with potentially serious side effects that won’t help your condition at all.

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Overlooking Drug-Induced Side Effects:

Doctors may also have trouble diagnosing reactions to medications they have prescribed. We have heard from hundreds of people describing a wracking cough that took them into the clinic time after time.

Some took cough medicine or antibiotics that did nothing, while others underwent multiple tests for infection, allergy or asthma, without result. Eventually, for these readers, the source of the problem was identified as an ACE inhibitor blood pressure medicine, usually lisinopril.

While the ACE-inhibitor cough is extremely uncomfortable, it is rarely life threatening. A different reaction to this drug, angioedema, can block airways. Intestinal angioedema can also cause serious harm, but it may be difficult to diagnose.

One reader related this experience:

“I came across your website while literally writhing in agony after my first dose of lisinopril. My stomach felt like I had eaten a bag of glass. After hours of agony and consulting Dr. Google, I knew what it was and went to the ER.

“None of the doctors had even heard of it before. I kept yelling to my husband, ‘Tell them about intestinal angioedema!’ All three doctors were flabbergasted that just one dose could cause this. I was in the hospital for four days. Moral of the story–be your own advocate!”

Millions of people take lisinopril without problems. When people do develop adverse reactions, though, health care providers must be alert to that possibility.

Protecting Yourself from Diagnostic Mistakes:

What can patients do to protect themselves from misdiagnosis? Dr. David Newman-Toker is Director of the Armstrong Institute Center for Diagnostic Excellence at Johns Hopkins University School of Medicine. He suggests that patients prepare a summary of their symptoms and history before seeing a clinician. After getting an initial diagnosis, ask:

“What is the worst thing this could be?”

Follow up with:

“Why is it not that?”

You will find 10 additional questions and ways to reduce diagnostic errors in our book, Top Screwups Doctors Make and How to Avoid Them.

In the book you will find a copy of our “Safe Patient Checklist.” We encourage you to make a copy and have your health professional fill it out at every visit. We also provide a list of the top diagnostic screwups health professionals make. More important are the Top 10 Questions to Ask to Reduce Diagnostic Disasters. The top five are:

  1. What are my primary concerns and symptoms? (This essential question will reveal if your doctor was actually paying attention).
  2. How confident are you about this diagnosis?
  3. What further tests might be helpful to improve your confidence?
  4. Are there any findings or symptoms that don’t fit your diagnosis or contradict it?
  5. What else could it be?

Here is a link to Top Screwups. It just might save your life or the life of someone you love.

One caveat: The online shipping costs are pricey. We apologize for that. It is a function of the shopping cart and we have no control over shipping costs. There is a less expensive shipping method.

To order by mail, please send $15 plus $4 postage and handling to:

  • Graedons’ People’s Pharmacy, Dept. TSDM
  • PO Box 52027
  • Durham, NC 27717-2027

Have you ever experienced diagnostic mistakes? If so, please share your story in the comment section below.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
Top Screwups Doctors Make and How to Avoid Them
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It is a well-kept secret, but harm from health care is a leading cause of death in this country. Get practical suggestions to protect yourself and loved ones from medical mistakes & drug disasters.

Top Screwups Doctors Make and How to Avoid Them
Citations
  • Newman-Toker, D., et al, "Serious misdiagnosis-related harms in malpractice claims: The “Big Three” – vascular events, infections, and cancers," Sept. 2019, https://doi.org/10.1515/dx-2019-0019
  • Singh, H, et al, "The frequency of diagnostic errors in outpatient care: estimations from three large observational studies involving US adult populations," BMJ Quality & Safety, Sept. 2014, doi: 10.1136/bmjqs-2013-002627
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In the hospital my mother was given a double dose of blood pressure (bp) meds which put her into the ICU and on a vent. The mistake happened when the hospital accessed her national pharmacy med records which showed two low bp meds – one of which was discontinued but continued to be listed by the pharmacy.

The hospital admitted its mistake, and the family was called and told it did not look good. She recovered and was transferred to a recovery unit, and the med records followed. I went over the meds with them, and they still listed the two low BP meds. Incredible! You need to ASK questions about the meds, and if you do not recognize a med – ask for the generic name. Bring records. Be an advocate for family & friends.

Physicians misdiagnosed my celiac disease for about 30 years. I finally diagnosed it myself. I feel 100% better without gluten or dairy in my system. Is it official? No. But I refuse to eat gluten again so that I can get an official diagnosis. Also, thyroid problems. I had pretty much every symptom of a low thyroid, but the tests were in the normal range. My doctor said there was no problem. I finally gave up and went to a naturapath who said “treat the symptoms not the tests results” and the thyroid pills have made me feel normal again. Sometimes doctors don’t seem to be able to handle things with multiple subtle systems that aren’t easy to resolve.

Medications are not the only misdiagnoses that can result in injury or death. My son’s badly sprained ankle was assumed to be broken (no x-ray) and put in a cast. Three days later, he was in agony and his toes had turned black. The doctor refused to take his calls, telling the receptionist that he was just trying to get pain medications. I took him to the ER, which saved his life. He had several pulmonary embolisms and spent weeks in ICU. He is still crippled because the main veins in his leg are blocked from ankle to hip and his leg swells if he is on his feet for more than a few minutes. The ER doctors said that if we had waited even a few more hours, he would have died. We have since heard from several people with this experience including the wife of a man who died as a result of the same misdiagnosis.

My 49 y.o. healthy brother died of a rare cancer – appendiceal CA which I was told originated in primitive tissue & did not visualize on CT scans. Nevertheless, dozens of CT scans were done & found to be inconclusive. He had severe abdominal pain & was sent home from ER a few times & finally then admitted & had fever when they were planning to d/c him. They found CA on 17/18 lymph nodes & he began on course of chemo treatment. Nothing went as well as the experts predicted it would be & he suffered greatly. He ended up with tube feedings which he courageously managed himself. I believe he received generic treatment for colon ca – not specialized to his specific ca. He died 11 months after diagnosis of SAD. Had state insurance. Feel this may have contributed to mediocre treatment by doctors whom I think should have referred him to specialist. He was a veteran & probably would have gotten BETTER treatment at the V.A. Hospital. Very disappointed w/oncologists he had. Beware! If oncologist not satisfactory, CHANGE! My brother did once but I wish he had done it again!

My regular physician prescribed an eardrop and an antibiotic which cleared it completely.

I’ve experienced several episodes of misdiagnosis and malpractice. I have learned to ALWAYS question and research diagnosis, test results and treatments. When I had severe kidney pain I was told it was in my head. It was actually a rather large group of kidney stones. During surgery the doctor’s hand slipped resulting in a shattered stone. Afterwards he refused to see me again.

An orthopedist did shoulder surgery for a Rotator Cuff Tear and didn’t use a scope which resulted in failed surgery and an additional 4 surgeries to repair but none used a scope and wound up taking bone/muscle rather than admit they couldn’t find the tear.

I found a teaching orthopedist who, using a scope, found 11 additional tears. I had kidney pain for 2 years, kept going to doc to be told it was kidney stones and to load up on Tylenol. 2 yrs later had to have my kidney removed due to cancer.

I kept having chest pain and was told it was anxiety. The pain got so bad I went to ER and was admitted due to having a heart attack. I could go on and on. Doctors took not only my health but my career and almost my sanity.

My friend keeps reminding me that half the doctors graduate in the lower half of their class! I now am terrified of doctors and hospitals. So very grateful to People’s Pharmacy for providing excellent reporting, resources, advocacy and a place to find real world experiences and help. 💓

No doubt that there are diagnostic mistakes. I am a family nurse practitioner and also a patient. I went through 5 years of right sided pelvic pain with multiple specialty consults- it was never diagnosed or treated properly until I found a visceral physical therapist that helped tremendously. She thinks I have an ascending colon adhesion- I have never had surgery. On the other side of the fence- as a provider- I listen intently to my patient’s symptoms and test accordingly but often can not find the source of chronic pain or abdominal complaints. I believe that modern medicine must be coupled with other modalities when caring for complex chronic conditions. I appreciate your newsletters.

More than 20 years ago, I was diagnosed by a Rheumatologist with Lupus, and placed on prednisone. Through my own research, it was my body after all, I contacted others, including pharmacists and 2nd & 3rd doctor opinions. Turned out, CIPRO caused a false positive. This antibiotic has been the worst Rx I have ever taken. From false positive labs, peripheral neuropathy, to lifelong suffering are things I deal with daily. Thank God I pursued answers and did my research!

Folks this is why it is called practicing medicine. The doctor’s are practicing on you! I am seventy four, and over the years I know of so many friends and myself included who have been treated for something they didn’t have. My first was at the young age of nineteen, and the doctor said I had appendicitis. After the surgery I was told it was an infected gland instead but they took out my appendix anyway. I was given intravenous penicillin, and my hand started to swell. I told the nurse and told her to stop the treatment immediately. When the doctor came in he said it was a good thing I had stopped treatment because I was allergic to penicillin. I hadn’t been allergic before but they overdosed me, and since then I have to make sure nothing is related to penicillin because my throat swells, and I can’t swallow.

I have to come out in support of our physicians. I read these comments and it saddens me, truly. My doc makes mistakes too. However, he didn’t go to medical school to kill me, and so far the only sort of doctor who has truly harmed me was a psychiatrist cardiologists sent me to after being unable to find a cause for my suddenly passing out in my 40s. He diagnosed depression (of course) and gave me the same drug that cardiologists use to control a rare heart arrhythmia (a birth defect), which coincidentally I had, but no one knew it. He wasn’t trying to harm me. As they say, “Give someone a hammer and everything looks like a nail.” I had myself taken off the drug a few years, and 50 lbs, later only to pass out driving and almost kill two people–and myself in an accident.

After that, the heart condition was found, but only after a year of searching for it by some of the best doctors in the state who doggedly refused to give up on me.

I’m not in medicine. I am an engineer turned accountant because society gave my career to Asia. However, mistakes or not, medicine is a very inexact science. It can be extremely expense and not yield a lot in useful results. It can kill as others have spoken. But, what are the alternatives? More lawyers to create yet more shortages of medical specialists in states without a cap on malpractice suits? Lawyers getting rich off medical errors when they happen? Insurance companies getting yet more wealthy from a terrified medical community? People refusing to become doctors at all because of society blaming them for mistakes? Then what?

I find no alternative that suits me other than talking to my doctor when a prescription isn’t working, or is working adversely. I’m still young enough at 68 to be the owner of my own health, making the doctor and the pharmacist my teammates. Ibuprofen gives me bad headaches. Oxybutynin (a urinary tract drug) wipes my memory like I have dementia. Opioid pain medications give me insomnia and make turn me into an “asshole on wheels”. That’s my unique physiology. I don’t blame my doctor. We have found those things out the hard way, but (s)he’s a teammate, a human attempting to do good in my life, nothing more.

I hate these medical errors. I understand the difficulty and the pressures of time that we’ve put doctors under is part of the problem. Lawyers and insurance companies seeking wealth like vultures circling potential prey is a big part of the problem. I wish it were different, but I’m not going to demonize the medical profession. I need them the most as I grow older. In the end, they–or nature–will kill me. That’s a fact. But, I’ll not resent their well-intended efforts at trying to do good in this world in spite of all the obstacles and risks they take when doing that.

Blessings to all, and I am sorry for the suffering that exists in our world. Truly I am.

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