Nov. 11, 2024 – You have the power to reduce the risk of one of medicine’s most serious dangers.
As either a patient yourself, or a caregiver for a loved one, you can take some simple steps that might help avoid a misdiagnosis – one of the leading causes of death in the United States.
Misdiagnosis – including missed, delayed, and wrong diagnoses – leads to an estimated 371,000 deaths in the U.S. each year, according to a 2021 study, and 424,000 permanent disabilities. Only heart disease and cancer cause more deaths.
“Diagnostic error is the single largest source of deaths across all care settings linked to medical error,” the study said. “It exceeds estimated deaths from all other patient safety concerns combined.”
This fall, the CDC and two other federal agencies released a diagnostic error “toolkit” for hospital leaders and health care personnel. It also contains a section for patients, families, and caregivers, because patient engagement is crucial to a correct diagnosis, the CDC says.
Indeed, there’s plenty that you can do to help a medical team make the right diagnosis for you and those close to you.
Common Misdiagnoses to Watch For
Based on autopsy reports, the rate of misdiagnosis in the U.S. has been gradually decreasing since the mid-20th century, said David Newman-Toker, MD, PhD, lead author of the study and a professor of neurology and director of the Center for Diagnostic Excellence at Johns Hopkins Medicine. But the misdiagnosis rate for some conditions leveled off in the early 2000s, and it has increased for other conditions.
Nearly 40% of serious harms or deaths due to misdiagnosis stem from five conditions: stroke, sepsis, pneumonia, venous thromboembolism (also called VTE, or blood clots in the veins), and lung cancer, the 2021 study said. Stroke was the most common, missed in 17.5% of cases.
“We’re not missing strokes when somebody is paralyzed on one side and can’t talk,” explained Newman-Toker. “We’re missing stroke when it looks like something else, such as inner ear disease, where the patient presents with dizziness or vertigo, or has headaches that look like migraine.”
Misdiagnoses are especially dangerous in the hospital, where patients are the sickest. But the largest number of errors happen in the emergency room; there are far more ER visits than hospital admissions, and ER patients may be fairly sick, Newman-Toker said.
More harm-causing misdiagnoses happen in primary care clinics than in hospitals, but there are far more visits to primary care offices than hospital admissions. The overall diagnostic error rate for all diseases is about 5%-10% across care settings, he said.
Agencies Offer Guidance to Patients
The CDC’s new toolkit offers the following tips for preventing diagnostic errors:
- Know the names of the attending doctor and the nurses caring for you in the hospital.
- Have online access to your electronic health record and patient portal.
- Make sure your medical and medication history is up to date.
- Create an electronic folder or use a notebook to keep track of test results and conversations with providers.
- Know how to alert your health care team about changes in your condition.
Before a test is ordered, ask why it’s needed, who is scheduling it, when it will be completed, and what to do to prepare. Discuss the results with your doctor or other personnel, and make sure you understand what they mean.
At discharge from the hospital, ask what the follow-up plan is and be sure you get detailed information about future tests and treatments.
Those are the basics. Newman-Toker has his own recommendations:
Before visiting a doctor or hospital, write a one-page summary bullet-pointing your symptoms and medical history. This gives busy doctors more time to think about a diagnosis rather than gathering information.
Make sure the doctor is willing to explain his diagnostic reasoning to you. If not, you might want to find a new doctor, Newman-Toker said.
Finally, don’t assume the diagnosis is correct. If you call the doctor and say your treatment isn’t working, your provider might prescribe a different medicine or dosage. “But if you say, ‘I’m not getting better. Are you sure we have the right diagnosis?’ that will cause them to pause and rethink. And you have to raise that possibility, because the doctor is so busy.”
Speak Up for Yourself!
Don’t be shy about asking questions, said Preeta Kutty, MD, MPH, an epidemiologist who is leading the CDC’s Core Elements of Diagnostic Excellence program.
“We’re trying to encourage the patient to ask questions, trying to empower them with a list that can enable them to ask these questions,” she said. “The more people who ask questions, the more the approach to their care will change.”
She urges patients to take notes in a notebook or dictate them into their smartphone. Because people are not at their best when they’re sick, she advises them to bring along a family member or caregiver who can ask questions and take notes for them.
Make sure you understand what’s been said, she added. Your doctor should ask you if you understood everything. If you’re struggling to understand the doctor, you can ask the nurse later to explain what the doctor said. Or ask a nurse to be present in the room with the doctor to help clarify things.
Don’t be afraid that you’ll hurt the doctor’s feelings. “Doctors expect and want patients to ask and have conversations about what a test is for and why it matters to their diagnosis,” said Patricia A. McGaffigan, RN, of the Boston-based Institute for Healthcare Improvement. “You need to be able to understand the risks and benefits of various treatment alternatives and make sure that treatment suits your preferences, she said. “These are reasonable and important discussions to have.”
Nobody knows you better than you do. McGaffigan said a patient can “coproduce safety with their care team” when they’re meaningfully engaged. “Patients are the one constant in the process of diagnosis,” she said. “They are the experts on themselves and the engine of safety, because they can shine a light on things that may not be visible to health care workers.”
Why Diagnostic Errors Happen
A patient safety organization called ECRI (founded as the Emergency Care Research Institute) recently issued a paper analyzing 3,000 “safety adverse events” that happened in 2023. About a third of these were related to diagnostic errors, and nearly 70% of these errors stemmed from the testing process. That includes ordering, collecting, and processing of specimens, use of testing equipment, and communication of lab and imaging results. Only a small portion of diagnostic errors were made by doctors who received accurate test results, ECRI said.
Marcus Schabacker, MD, PhD, the CEO of ECRI, blames diagnostic errors mainly on flaws in systems. Improvement is hobbled because health care organizations tend to analyze incidents narrowly, from the viewpoint of individual practitioners or devices.
“What they’re missing is the systems aspect, and so they fall short of understanding the true root cause,” he said. “That is not the person not having been trained enough, but that we don’t design a system which takes the fallibility of people into account. We don’t create enough redundancies and robust processes to ensure that if things go wrong, they’re caught early.”
Newman-Toker is skeptical of this explanation. “There’s no way that 70% of diagnostic errors came from things like failure to close the loop on reporting test results,” he said. “That does happen, and it’s horrible when it happens. But in one study we did, we found the number of cases that were due to that kind of communication error – dropping the ball – was less than 5%.”
Another study by different researchers lends support to Newman-Toker’s position. In this study of 2,428 patients who died in the hospital or were transferred to the intensive care unit, a missed or delayed diagnosis happened in 23% of the cases, and 17% of these errors caused temporary or permanent harm to patients.
The paper said the most important targets for improvement are choosing the correct tests, ordering them fast enough, correctly interpreting results, and improving assessments of the evidence, such as recognizing complications or reconsidering another diagnosis.
Whether it’s the system, the doctor, or both who make a mistake, you’re the one who will suffer the consequences. So be prepared to challenge the professionals. For example, you may discover the wrong test has been ordered, or is being done on the wrong part of the body, Schabacker said. You can even be mistaken for someone else.
The more alert and informed you are, the better your chances of avoiding a misdiagnosis.
Women and minorities have a 30% higher chance of being misdiagnosed than White men, Schabacker said. For instance, pulse oximeters routinely give inaccurate readings when a patient has darker skin.
Doctors are not always open to patient questions, Schabacker said. But Kutty said she believes that the pandemic changed many doctors’ attitudes because they saw so many patients die.
“A lot of really bad things happened during COVID,” she said. “But one thing it did was to change the mindset of health care professionals. I hope and I believe that the [CDC’s diagnostic toolkit] will be helpful, not just because it comes from federal agencies, but because health care professionals think differently now.”