Personal Stories of Diagnostic Errors

Diagnostic errors can wreak havoc on your health. As expected, a diagnostic error can interfere with your chance to get better. And in the worst case scenarios, misdiagnoses can even cause premature deaths. In this post, you’ll read stories of personal stories of diagnostic errors and learn tips to reduce your risk of potentially harmful diagnostic errors.

What is a diagnostic error?

A diagnostic error is any mistake or failure in the diagnostic process that leads to a wrong diagnosis, a missed diagnosis, or a delayed diagnosis.

It’s easy to see how diagnostic errors can be potentially harmful to patients. With an incorrect diagnosis, patients may not receive a needed treatment, may receive the wrong treatment, or may have a dangerous delay in the proper treatment. The harm from a diagnostic error can range from minor inconvenience to death.

How common are diagnostic errors?

The numbers are eye opening:

• An estimated 12 million people are misdiagnosed in outpatient settings each year in the US.
• Roughly 7.4 million people are inaccurately diagnosed every year in US emergency departments.
• Approximately 50% of doctors surveyed report they encounter diagnostic errors at least monthly.
• Autopsy studies find major diagnostic discrepancies in 10–20% of cases reviewed.

How do diagnostic errors occur?

Importantly, medicine is more art than science. Doctors make diagnostic decisions based on the patient’s signs, symptoms, and “story” combined with their own knowledge and career experience.

However, there are a slew of issues that cause doctors to make diagnostic mistakes, including the following:

• Failure to order a needed test.
• Failure to consider the correct diagnosis.
• Lack of follow-up, or a delay, for an abnormal test result.
• Failure to properly consider a critical piece of the patient’s history.
• Delay, or failure, to order a referral.

Doctors don’t always take patient concerns seriously.

Sometimes, patients experience potentially harmful diagnostic errors because their doctors either didn’t listen to them, or brushed aside their concerns. Unfortunately, this happens in doctors’ offices, emergency departments, and hospital rooms.

Unsurprisingly, patients often have a sense of what is ailing them and/or the seriousness of their condition, but medical staff sometimes ignore their concerns.

Furthermore, many people find it hard to speak up when doctors downplay or ignore their concerns. Doctors are authority figures and it can be difficult to challenge their authority.

Importantly, your life may literally depend on your ability to speak up, so don’t be intimidated!

This post focuses on the importance of trusting your gut and speaking up, but there are many steps you can take to reduce your risk of potentially harmful diagnostic errors.

The stories below illustrate the importance of speaking up and the potential consequences of doctors not listening to patients and family members.

Personal stories of diagnostic errors: Serena Williams.

Serena shares her story to help others. Serena’s history of pulmonary embolisms caused her immediate and serious concern when she developed shortness of breath shortly after giving birth.

Assuming it was another pulmonary embolism, she told a nurse she needed a CT scan with contrast and a blood thinner ASAP. The nurse thought Serena was confused, but Serena insisted.

The nurse summoned a doctor who performed an ultrasound on her legs. Serena insisted she needed a CT scan, not an ultrasound, as well as an IV drip of blood thinner.

After a normal ultrasound, she had a CT scan which found several small blood clots in her lungs. They immediately started her on an IV drip.

Although she encountered a series of medical issues resulting from the clot and the blood thinner, she is lucky she is alive. Sadly, about 1/3 of patients with undiagnosed/untreated pulmonary embolisms don’t survive.

Trust your instincts to reduce your risk of diagnostic errors.

Trusting your instincts, and sharing your your concerns with your doctor, can help you get a correct diagnosis. If your doctor won’t listen, find a doctor who will!

Each of the personal stories of diagnostic errors below happened to one of my family members. Our stories illustrate the importance of speaking up, and what can happen if doctors don’t take your concerns seriously.

When you read our stories below, you may find it difficult to believe that one family could have so many experiences with potentially harmful diagnostic mistakes. But, in reality, experts believe it is “likely that most people will experience at least one diagnostic error in their lifetime, sometimes with devastating consequence”.

Perhaps you’ve experienced a potentially harmful diagnostic error and not even realized it?

A emergency room resident didn’t realize the severity of my son’s broken bone. 

My son Zachary, whose terminal brain cancer led me to start Zaggo, was an active boy with a normal childhood. When he was 10 years old, he fell in gym class and broke his arm.

First, the local hospital’s ER doctor told us it was a bad break that definitely required surgery. We knew it was bad — we could see the broken bone pushing outwards on his skin! At their advice, we transferred him by ambulance to the area children’s hospital.

The resident treating Zach in the ER told us no surgery was required – he could set the broken bone in the ER. I insisted the resident call the attending, and the resident insisted he was correct.

After some heated debate, the attending doctor came in from home. The senior doctor, far more experienced than the resident, immediately agreed that Zach needed surgery. After the surgery, the senior doctor apologized on behalf of the resident and told me he was glad I insisted on calling him in.

Zach made a full recovery but could have suffered from lifelong disabilities if we had not followed our instincts and insisted on a more experienced doctor.

A diagnostic error almost killed my sister.

My sister’s life almost ended due to a misdiagnosis. She had severe pain in her abdomen that would not ease. Her internist suspected a kidney stone and ordered testing and a visit with a kidney specialist.

The specialist was booked solid, so the office manager offered my sister an appointment in a week. My sister, who felt something was seriously wrong due to the severity of her pain, insisted on an appointment for the next day.

The next day, the specialist recognized the urgency and sent her to the hospital. Further testing revealed a twisted colon, a life-threatening condition that causes death in almost all patients who are not treated, and in up to 37% of patients who have surgery. My sister saved her own life by trusting her instincts which led her to insist on immediate medical care.

My mother permanently lost the use of her arm because of a diagnostic error.

A story involving my mother did not have a happy ending. When she was 4 years old, with her arm in a cast from a previous break, she slipped and fell. Complaining of pain, my grandmother took her to the doctor.

Despite my grandmother’s concern, the doctor insisted the cast protected my mother’s arm, keeping it safe from harm. My grandmother stated her daughter was in a lot of pain and something must be wrong. The doctor refused to act, so the old cast remained in place.

Weeks later, when the doctor finally removed the original cast, he realized my mother had indeed broken her elbow on the 2nd fall. Sadly, this left my mother’s arm permanently bent at 90 degrees. When she was 16, surgeons took a bone from her thigh and recreated an elbow of sorts, leaving her with minimal use of her arm and a lifelong disability.

Don’t let doctors tell you it’s “all in your head”.

Yes, mental health issues can cause physical symptoms that mirror illnesses. However, don’t let a doctor ignore you if you suspect that you have a serious, physical condition.

My personal stories of diagnostic errors below illustrate how difficult it can be to get a proper diagnosis and treatment when doctors think your symptoms are due to mental health conditions.

When doctors couldn’t figure out why I was dizzy, they blamed my emotions.

I was in my late 20s when I developed dizziness so severe I was unable to walk without grabbing a wall. I spent 3 agonizing months in bed while doctor after doctor performed tests that did not show any physical issues.

More than one doctor suggested my dizziness was due to depression. Of course, I felt depressed after 3 months in bed with no end in sight, but I didn’t feel depressed when this started! Finally, I found a doctor who suspected an allergic reaction to our cats. He prescribed anti-allergy medications and I was better in a week!

My mother almost died after several doctors missed a serious condition and suggested it was “in her head”.

My mother has a similar story. When in her 30s, she developed abdominal pain, sometimes severe, which came and went. Doctor after doctor could not diagnose her problem.

Her primary doctor told her that it was “in her head”. As time progressed, her pain became so severe she could not walk. Fortunately, another doctor felt a growth in her abdomen during a physical exam.

She was rushed to the hospital by ambulance. Surgeons removed a “swinging” cyst wrapped around one of her Fallopian tubes. Surgeons found peritonitis, an inflammation of the membrane that lines the inner abdominal wall and covers the organs within the abdomen. If left untreated, it can lead to a severe, potentially life-threatening, infection.

If she listened to her doctors and sought mental health care instead of physical care, she may have died.

Reduce your risk of diagnostic errors.

The personal stories of diagnostic errors included in this post are a tiny sampling from the countless cases of diagnostic errors happening every day, illustrating the importance of speaking up if something doesn’t seem right.

Follow these tips to reduce your risk of a misdiagnosis and/or delayed treatment:

• Remember that doctors and other medical professionals are all humans, and humans make mistakes! Don’t assume all doctors are right all the time.
• If something doesn’t seem right, speak up! Be persistent until you feel that the doctor is listening to you.
• If you feel that a doctor is dismissive of your concerns, try to find a new doctor:
  • In the hospital, you can ask to for a senior doctor in an emergency room or when you are an admitted patient.
  • For outpatient care, ask your friends and family for recommendations for a new doctor. And read my blog post on how to find a new doctor.
• Prepare for appointments by writing down your “story” and your questions, before you go to the doctor. Make sure you relate all of this to your doctor – even if he/she is rushing you.
• Bring a complete list of medications taken, along with test results, to every medical appointment. Share them with every doctor on your team.
• When you receive a diagnosis, ask the doctor if there are other possible causes.

For more information and tips, read 10 Steps to Reduce Your Risk of Diagnostic Error.

Do men and women face the same risk of diagnostic errors? 

This may not come as a surprise – women get less respect from the medical world than men. You may even have noticed that among these personal stories of diagnostic errors, most involved women. The other story involved a young boy.

There is evidence that women and men are not treated equally. Doctors are more likely to ignore women’s pain and symptoms, which can lead to dangerous delays in diagnosis and treatment, and even lead to unnecessary deaths.

Women – you need to speak up even more insistently than men!

For a detailed look at this topic, read my post Is There Gender Bias in Medicine?

Learn more…

Being an engaged member of your medical team can help you get the best care and outcome possible. Read these blog posts for more information:

• 10 Tips for a Better Medical Appointment.
• How Can You Get the Best Healthcare? Actively Participate!
• Understanding Medical Information Is Harder Than Most Realize.
• 10 Tips to Communicate Better with Doctors.
• Why Take Detailed Notes at Doctor Appointments?
• The Dangers of Too Many Medical Tests and Treatments.
• What is the Best Time of Day for Medical Care?

NOTE: I updated this post on 2-20-23.