Most Americans will get a wrong or late diagnosis in their lifetimes, a new report finds — often with devastating effects.
It's almost impossible to quantify, but the problem is serious, and the lack of a coherent medical system helps keep it under the radar, the National Academy of Medicine finds in a new report.
The solution involves getting pathologists and radiologists more actively involved in a patient's diagnosis, the Academy, formerly the Institute of Medicine, recommends. It's also calling for changes to medical malpractice laws so professionals aren't afraid to own up to mistakes, and going back to doing autopsies, culture changes at hospitals, clinics and institutions and better use of technology.
"Everyone will experience one meaningful diagnostic error in their lifetime," Dr. John Ball, chairman of the Committee on Diagnostic Error in Medicine, which wrote the report, told NBC News.
"We simply don't know what the incidence of it is. We need to study it more to be able to do anything about it. It's an under-represented, understudied area in medicine and we need to shine a light on it."
According to the report:
- At least 5 percent of U.S. adults who seek outpatient care each year experience a diagnostic error.
- Postmortem exams suggest diagnostic errors contribute to 10 percent of patient deaths.
- Medical records suggest diagnostic errors account for 6 to 17 percent of adverse events in hospitals.
Sometimes people suffer from more than one error.
Susan Sheridan of Boise, Idaho, lost her husband to a late cancer diagnosis and has a permanently disabled son because no one noticed his serious jaundice as a newborn.
She knew something was badly wrong soon after her son Cal, who is now 20, was born.
He was a little jaundiced, which is normal for a newborn, but Sheridan noticed more alarming symptoms. "When he was about three or four days old, he began to show signs of being super sleepy," Sheridan said. He'd been a strong feeder, but was weak and floppy. Sheridan called St. Luke's Hospital in Boise, where Cal had been born, for advice.
"They said, 'Are you a first time mom?' I said yeah. They said, 'Don't worry — this is normal'," Sheridan said.
She remained worried and her pediatrician reluctantly told her to bring Cal in.
"He was so yellow he was turning a kind of orange color. The receptionist called him the pumpkin baby because he was so yellow orange," Sheridan said.
These are all classic signs of too-high bilirubin. Newborns have tiny livers that cannot easily process this compound. When levels get too high, bilirubin can damage the brain. Many hospitals now routinely test for it, but in 1995, when Cal was born, it had fallen out of fashion.
Cal was given an antibiotic for an ear infection and sent home. His bilirubin continued to soar, damaging his brain. A level of 20 is considered dangerous. Cal's was 34. It's easy to treat by putting the baby under special lights for a few days or, if it gets worse, with a blood transfusion.
Time after time Sheridan's worries were dismissed, even as she begged for help.
Cal developed kernicterus, the brain damage caused by bilirubin. His body arched backwards and he wailed and trembled. Sheridan demanded that a neurologist examine Cal. But the neurologist, too, failed to see the danger.
Sheridan and her husband Pat did not give up. They eventually got Cal diagnosed and treated at the University of Washington. But it was too late.
"Cal has really significant cerebral palsy," Sheridan, who is now 55, said. "He can walk with a walker. He is very speech impaired, hearing impaired. His eyes kind of shoot all over the place."
He will require lifetime care. The Sheridans settled with St. Luke.
"What happened to Cal is unacceptable," Sheridan said.
Sheridan became a patient activist and testified in Washington about the need for better diagnosis of jaundice, and some guidelines to prevent such errors from happening again. She works with the Society to Improve Diagnosis in Medicine, which pressed for Tuesday's report.
The report calls for guidelines, too, and better training. Hospitals, healthcare systems, organizations and others should "develop and deploy approaches to identify, learn from, and reduce diagnostic errors and near misses in clinical practice," the report recommends.
Ball says it's important to create a culture where hospitals and doctors should feel free to admit their mistakes. "If people are afraid to speak up, then bad things can continue to happen," he said.
The Institute of Medicine called for this same culture of confession in its landmark 1998 report on medical errors that found tens of thousands of Americans die from medical mistakes such as botched surgery or infections acquired in the hospital.
Almost unbelievably, the country's disjointed medical system struck the Sheridan family again.
As Susan embarked on a new career advocating for better patient involvement, Patrick developed a pain in his neck. Doctors prescribed physical therapy, offered pain pills, tried acupuncture. Nothing helped. An orthopedic specialist ordered an MRI scan and found a mass on his spine.
"We went to a very well-known hospital in Arizona," Sheridan said. A surgeon got the tumor out and told the Sheridans it was benign. But Susan didn't trust this, not after what she went through with Cal.
"I asked for the surgical report and pathology and got (a frozen section of tissue from the tumor)," she said. She took everything to their own general practitioner.
"What we didn't know is that the pathologist had ordered additional stains, that he was doing additional testing on my husband's tumor," she said. "It was a significant, aggressive tumor." The pathologist faxed his report to Sheridan's doctor 23 days later.
"It got put into my husband's chart without the doctor ever seeing it," Sheridan said.
Her family celebrated what they thought was Patrick's recovery, little suspecting that malignant tumor cells were spreading in his body. Six months later, the pain was back.
It was sarcoma. "During the six months of non-treatment, the tumor metastasized and penetrated his spinal cord," Sheridan said. Patrick went to MD Anderson Cancer Center in Houston for round after round of surgery and chemotherapy. "He didn't make it," she said.
"That diagnostic error ended his life." Patrick died in 2002, at 45.
Why didn't the pathologist make sure the neurosurgeon saw the report about the tumor? "What if he had picked up the phone and called the doctor and say, 'We have got something bad on our hands'?" Sheridan asked.
She even asked the pathologist directly. "He said he knew it was cancer and he thought everyone else did. I guess that he trusted the system would close the loop somehow," she said.
"I learned that doctors don't get reimbursed or paid for talking to each other. Our system prevents the doctors from talking to each other."
Tuesday's report addresses this issue directly. Right now, they're not encouraged or paid to do so. But they should be, Ball says. The report calls for this type of consultation to be paid for, and given its own medical code for billing the insurance company.
"Radiologists and pathologists need to be much more involved in clinical care," Ball said. "There are 30,000 diagnostic tests (and) 10,000 of those are molecular tests. No single physician can figure out which tests do I use on this particular patient."
The report also calls for a return to the lost art of the autopsy, another procedure that doctors and hospitals have dropped. Patients are almost certainly dying of missed diagnoses, and no one knows, the report says.
"The incidence of autopsies is falling off tremendously, in part because it's not paid for and in large part because people think that the diagnostic technologies that we have now have supplanted the autopsy, that we should know ahead of time what the patient had," Ball said.
Electronic medical records will help, if and when they ever become widely used, the report says. But there's still not a system that ensures one hospital's system can talk to another's, and many doctors are reluctant to use even basic electronic tools.
The Affordable Care Act's provisions to encourage teams to get paid for caring for patients, instead of getting reimbursed piecemeal for each test, each visit and each diagnosis, should also help, Ball says.
Sheridan, who is now director of patient engagement for the Patient-Centered Outcomes Research Institute (PCORI), wants more. "Our healthcare system…I have no clue who is in charge," she said. "I assumed somebody was in charge of keeping us safe."
And there needs to be a body keeping tabs on errors.
"There is no place for us to report when things go wrong," Sheridan said. "The first thing I wanted to do was tell somebody, so they could make sure that will never happen again."