By Liz Szabo - KFF Health News
Charity Watkins sensed she was in a very bad way when she began to suffer from burnout after the birth of her daughter.
Sometimes, Watkins, then 30, had to stand on the stairs to catch his breath. Her obstetrician told her that the cause of her weakness and fatigue was probably postpartum depression. When the woman, who is black, complained of coughing, her doctor blamed it on the flu.
About eight weeks after giving birth, she thought she was having a heart attack and her husband took her to the emergency room. After a five-and-a-half-hour wait in a North Carolina hospital, she returned home to breastfeed her baby without being cared for.
When a doctor finally examined Watkins three days later, he immediately noticed that his legs and stomach were swollen, a sign that his body was retaining fluids.
After a chest X-ray, the doctor diagnosed him with heart failure, a serious condition in which the heart becomes too weak and unable to properly pump oxygen-rich blood to organs throughout the body. The woman spent two weeks in intensive care.
He says a cardiologist later told him, "We almost lost you."
A photograph of Charity Watkins holding her daughter after giving birth. Kate Medley for KFF Health News
Watkins is among the 12 million adults misdiagnosed each year in the United States.
Researchers found, in a study published Jan. 8 in the scientific journal JAMA Internal Medicine, that nearly 1 in 4 hospitalized patients who died or were transferred to intensive care had been misdiagnosed. Nearly 18% of patients misevaluated were injured or died.
According to a study published in July in the journal BMJ Quality & Safety, an estimated 795,000 patients a year die or become permanently disabled because of misdiagnosis.
More Misdiagnoses in Women and Minorities
Some patients are more at risk than others.
Women and racial and ethnic minorities are 20% to 30% more likely to be misdiagnosed than white men, according to Dr. David Newman-Toker, a professor of neurology at Johns Hopkins School of Medicine and senior author of the BMJ study.
"It's a significant and inexcusable fact," he said.
Researchers consider misdiagnosis to be an urgent public health problem. According to the report, rates range from 1.5% of myocardial infarctions, 17.5% of strokes, and 22.5% of lung cancers.
Weakening of the heart muscle — which led to Watkins heart failure — is the most common cause of maternal death between one week and a year after childbirth, and is more common among black women.
Heart failure "should have been number one on the list of possible causes" of Watkins' symptoms, said Dr. Ronald Wyatt, chief scientific officer and chief physician of the Society for Improved Diagnosis in Medicine, a nonprofit research and advocacy group.
Maternal mortality for black mothers has risen dramatically in recent years. The U.S. has the highest rate of any developed country. According to the Centers for Disease Control and Prevention (CDC), non-Hispanic black mothers are 2.6 times more likely to die than non-Hispanic white mothers. More than half of these deaths occur within a year of childbirth.
Research shows that black women with childbirth-related heart failure are often diagnosed later than white women, says Jennifer Lewey, M.D., co-director of Penn Medicine's pregnancy and heart disease program. That can allow patients to deteriorate further, making them less likely to fully recover and more likely to suffer from weakened hearts for the rest of their lives.
Watkins says the diagnosis was life-changing. Doctors advised her "not to have another child or I might need a heart transplant," she said. Being deprived of the opportunity to be a mother again, she said, "was devastating."
Racial and gender disparities are widespread. Women and minority patients who have heart attacks are more likely than others to be discharged without diagnosis or treatment.
Black people with depression are more likely than others to be misdiagnosed with schizophrenia.
Minorities are less likely than whites to receive an early diagnosis of dementia, depriving them of the opportunity to receive treatments that work best in the early stages of the disease.
[Doctors report serious problems in the care of pregnant women due to anti-abortion laws. "I had to see my daughter suffer," said one Latina.]
Misdiagnosis is not new. Doctors have been using autopsy studies for more than a century to calculate the percentage of patients who die with undiagnosed diseases. While those studies show some improvement over time, life-threatening errors are still far too common, despite the wide variety of sophisticated tools, says Dr. Hardeep Singh, a professor at Baylor College of Medicine who studies ways to improve diagnosis.
"The vast majority of diagnoses can be made by knowing the patient's history very well, asking follow-up questions, examining the person and ordering basic tests," says Singh, who is also a researcher at the Michael E. DeBakey VA Medical Center in Houston. When we talk to people who have been misdiagnosed, "one of the things we hear over and over again is, 'The doctor didn't listen to me.'"
"Racial bias" and the health care system
Racial disparities in misdiagnosis are sometimes explained by pointing out that minority patients are less likely to be insured than whites and often lack access to high-quality hospitals. But the picture is more complicated, according to Dr. Monika Goyal, an emergency physician at Children's National Hospital in Washington, D.C., who has documented racial bias in children's health care.
Goyal and his colleagues found, in a 2020 study, that Black children with appendicitis were less likely to be correctly diagnosed than their white peers, even when both groups of patients went to the same hospital.
While few doctors deliberately discriminate against women or minorities, many do so inadvertently.
"Racial prejudice is ingrained in our culture," Goyal said. "It's important that we all start acknowledging that."
Demanding schedules, which prevent doctors from spending as much time with patients as they'd like, can contribute to diagnostic errors, explained Karen Lutfey Spencer, a professor of health and behavioral sciences at the University of Colorado-Denver. "Doctors are more likely to make biased decisions when they're busy and overworked," Spencer added. "There are some really smart, well-meaning people who are being eaten up in a system that is very unforgiving."
Doctors make better treatment decisions when they're more certain of a diagnosis, Spencer said.
In one experiment, researchers asked doctors to watch videos of actors pretending to be patients with heart disease or depression, make a diagnosis and recommend follow-up measures. Doctors felt much safer evaluating white men than black patients or young women.
"If they were less sure, they were less likely to take action, such as asking for evidence," Spencer says. "If they were less sure, they could wait to prescribe treatment."
It's easy to understand why doctors are more confident in diagnosing white men, Spencer says. For more than a century, medical books have illustrated diseases with stereotypical images of white men. Only 4.5% of them show dark-skinned patients in general medical manuals.
This may help explain why darker-skinned patients are less likely to receive an early diagnosis of diseases that affect the skin, from cancer to Lyme disease, which causes a red or pink rash at the earliest stage of infection. Black patients with this condition are much more likely to be diagnosed with something more serious that can cause arthritis and damage the heart. Blacks with melanoma are three times more likely than whites to die within five years.
The pandemic helped raise awareness of the fact that pulse oximeters — devices used on the fingertips to measure a patient's pulse and oxygen levels — are less accurate for dark-skinned people. The devices work by shining a light through the skin; Their failures have delayed critical care for many Black patients.
Seven years after her misdiagnosis, Watkins is an assistant professor of social work at North Carolina Central University in Durham, where she studies the psychosocial effects experienced by black mothers who survive serious complications of childbirth.
"Sharing my story is part of my healing," said Watkins, who speaks to medical groups to help doctors improve their care. "It's helped me take back the power in my life, just to help others."