In 2002, when Tim Copeland was just 12 years old, he started having seizures and difficulty speaking. His physician in San Diego couldn't figure out what the problem was. When Copeland eventually went to see a neurosurgeon in Escondido, California, he was diagnosed with cerebral cavernous malformation, a disorder of the blood vessels that causes them to leak into the brain.
The surgeon told Copeland that his brain was inoperable and the best option was radiation therapy to slow the bleeding.
But Copeland's mother wanted a second opinion. So the family flew to Rochester, Minnesota, to seek advice from a surgeon at the Mayo Clinic.
"[The Mayo surgeon] said not to listen to anything [the last surgeon] said, and ... that he had no idea what he was talking about," Copeland said.
The Mayo doctor recommended surgery as soon as possible to cut the problematic lesion out of Copeland's brain.
Within weeks, the boy was on an operating table. Now 26, and a research associate at University of California San Francisco, he hasn't had a seizure since.
If Copeland had gone with that first doctor's advice, he said, "I would be dead right now or permanently disabled. It’s not even a question." Leading up to the surgery, his health had rapidly deteriorated; he wasn't even responding to high doses of anti-seizure medication.
After the operation, the neurosurgeon told Copeland the uptick in symptoms was due to an increase in the severity and frequency of the hemorrhage in his brain.
"I was very lucky that my mom had a bad feeling [about the first doctor's advice]," Copeland added.
Copeland's story is probably a familiar one. Many Americans get radically diverging opinions from surgeons on the question of whether to operate. These contradictory viewpoints can be a source of great stress and confusion, leaving patients unsure about what to do in what are often life-or-death situations.
There's plenty of guidance out there for surgeons, so why is this so common?
A new study, published in the Annals of Surgery, tried to get to the bottom of that question. The authors found it all seems to come down to how different surgeons perceive risk — a reminder of how terrible humans are at risk perception, even highly skilled surgeons.
For the research, led by Greg Sacks, a surgical resident at the University of California Los Angeles, a national sample of more than 750 surgeons was presented with four detailed clinical vignettes, asking the doctors to judge the risks and benefits of both operating and not operating in cases that could go either way.
When faced with identical scenarios, the surgeons came up with vastly different estimates for the potential harms and advantages of surgery or nonsurgical management of the disease.
In three of the four cases, surgeons were nearly split on the decision of whether to cut. One vignette, for example, involved the question of an appendicitis on an otherwise healthy 19-year-old with fevers and pain in her right lower abdomen. Here, 49 percent of respondents suggested surgery while 51 percent recommended against it.
In another vignette — involving a 68-year-old patient with a blockage in the small bowel — there was more agreement: 84 percent thought surgery was a good idea. Still, 15 percent of the doctors thought the harms of the surgery outweighed the benefits, once again displaying the variability in surgical decision-making.
This variation seemed to come down to surgeons' perceptions of risks and benefits, the researchers wrote: "Surgeons were less likely to operate as their perceptions of operative risk increased and their perceptions of nonoperative benefit increased."
And those risk perceptions were very predictive of whether or not a surgeon would recommend an operation: "Surgeons were more likely to operate as their perceptions of operative benefit increased and their perceptions of nonoperative risk increased."
But the surgeons differed by as much as 0 to 100 percent when it came to estimating the risks of a surgery, such as the chances a patient might experience a serious complication.
The advice of surgeons here seemed to be more of an impressionistic art than a science.
"The truth is that most of the surgeons in their sample are quite experienced, and yet have wildly different assessments of risks and benefits among similar patients," said Ashish Jha, a Harvard professor of health policy.
Jha, whose research focuses on improving the quality of health care, called the findings "disturbing" and "enormously important." They should remind us, he said, of how difficult it is for people to evaluate risk, how bad we all are at it, and "how even surgeons are not able to escape these deeply human deficiencies."
Another implication of this research, Sacks said, is that individual surgeons may be communicating very different risks and benefits to their patients when talking about a potential operation.
Patients need more accurate information about the risks and benefits of surgery
This new research should also remind us of how varied individual surgeons' advice can be — and that we need to develop better tools to reduce that variation.
One possibility is using a risk calculator, like this one developed by the American College of Surgeons: It takes high-quality data from millions of patients around the country who have had similar operations and uses variables — such as how sick a patient is and the patient's age — to come up with estimates on the risks of surgery.
In another study, Sacks found that surgeons who used the tool made more accurate predictions and were less varied in their judgments compared with those who didn't rely on data. In the end, however, the tool didn't change their decision on whether to operate.
"Although the size of the effect of the online risk calculator is modest," Jha said, "it reminds us that surgeons are trying their best based on limited information — their own experience."
Tools that provide data like the risk calculator — which is available free online — can help doctors make better choices, or, at the very least, better inform patients of risks and benefits.
"It's clear we need to develop more resources like this to be additional input beyond personal experience for surgical decision-making," Jha said.
Copeland, who had the brain surgery that saved his life, would like to do just that. His experience led him to pursue a PhD in epidemiology, and he wants to figure out how to bring decision support systems and evidence-based medicine into consultations with surgeons.
"[These can] supersede the personal biases and subjectivity of physicians," he explained. "They're highly skilled at interpreting and practicing medicine — but that leaves a lot of room for error. We can't expect them to be encyclopedias."