For Ronald Scott of Washburn, the crippling headaches first took hold in January. Lacking an accurate diagnosis for months, he eventually suffered so intensely that the 78-year-old Air Force veteran contemplated the most drastic form of relief.
“He said, ‘If I had a gun, I would shoot myself. The pressure in my head is so bad,’” his daughter, Tammi Scott Easler, recalls.
His doctor suspected a bad vertebra in Scott’s back and prescribed Tramadol, a narcotic painkiller, “like M&Ms,” Easler said. The headaches persisted over the next few months, often confining Scott to bed.
Then came another diagnosis — allergies. He had his ears flushed, to no avail.
In June, Easler received a call that her father had collapsed on his doorstep. He was transported to the hospital, complaining of a headache and weakness on his life side. He hadn’t suffered a stroke, the doctors told Easler, so Scott was sent home.
Shortly after, he fell and broke his hip, winding up back in the hospital, she said. When staff or visitors approached the left side of his hospital bed, he failed to notice or respond, Easler said. Concerned, she pushed for a CT scan.
The results were crushing.
“He had stage four brain cancer, with a tumor over his right eye,” Easler said.
On July 17, just months after the headaches began, Scott died.
Easler acknowledges the terminal illness unavoidably would have claimed her father’s life, but the delayed diagnosis still cost him dearly, she said.
“I don’t think it would have changed the outcome, my dad would have passed away,” she said. “But I really feel that had people listened and taken the extra step to see why this man is having headaches, maybe the last two months of his life would have been less painful for him.”
Hospital staff told her they never would have performed the CT scan without her insistence, Easler said.
“You have to advocate, and sometimes you do have to step on toes to make people listen to you because it’s the only way you get their attention,” she said.
According to a sweeping new report, most people will receive a wrong or delayed diagnosis at least once during their lives, sometimes with “devastating consequences.” While diagnostic mistakes are much more common than medication mix-ups, infections or other health care errors, “they have been largely unappreciated within the quality and patient safety movements in health care,” wrote the independent panel of medical experts who authored the Institute of Medicine report, “ Improving Diagnosis in Health Care.”
The institute, part of the National Academy of Sciences, also issued a landmark 1999 report on patient safety, revealing that up to 100,000 patients die each year in hospitals due to preventable medical errors.
But the new report is the academy’s first to explore difficult to measure problems with diagnoses. The authors defined a diagnostic error as a “failure to establish an accurate and timely explanation of the patient’s health problem or communicate that explanation to the patient.”
While the authors don’t speculate about how many diagnostic errors occur, a “conservative estimate” found such errors affect 5 percent of U.S. adults who seek outpatient care each year. Such errors contribute to 10 percent of patient deaths, according to the report.
“Urgent change is needed to address this critical issue,” said Elisabeth Belmont, corporate counsel for MaineHealth and a member of the committee that conducted the study. “Without a dedicated focus on improving diagnosis, these errors will likely worsen as the delivery of health care and the diagnostic process continue to increase in complexity.”
Diagnostic problems stem from a range of causes, from too little collaboration among clinicians, patients and their families to “a culture that discourages transparency and disclosure,” according to the report.
Improving diagnosis — a process that unfolds over time, involving doctors, specialists, nurses, pharmacists and others across various settings — will require broad change within the health care system, the authors stated.
“The stereotype of a single physician contemplating a patient case and discerning a diagnosis is often not the case, especially given the increasing complexity of diagnosis and health care,” Belmont said. “Moreover, diagnostic errors aren’t always due to human error, but rather, they often occur because of errors in the health care system.”
The report urges clinicians to work with patients and families as part of a team.
The days of “if it was important, the doctor would have told me,” are over, said Lisa Letourneau, executive director of Maine Quality Counts, a coalition working to improve health care in Maine. Patients must ask for questions up front, while clinicians need to be more proactive about bringing patients and their families into the fold, she said.
“That’s a pretty profound change for a lot of people,” Letourneau, who also is an emergency physician, said. “It’s a little bit generational but it’s also just a different way of people thinking about their health care.”
At the same time, better care doesn’t necessarily mean undergoing more tests and treatments, she said. Overtreatment produces another kind of harm — costing the country at least $210 billion a year, according to the Institute of Medicine — and leading to unnecessary pain, suffering and complications from some conditions that could have been left alone, experts say.
The report’s authors recommended that health care providers help patients to understand the diagnostic process and share their feedback, allow patients better access to their electronic medical records and find ways to identify, explore and learn from misdiagnoses. The medical malpractice and health care payment systems also must support improved diagnosis, they wrote.