By NOREENA HERTZ
LONDON — SIX years ago I was struck down with a mystery illness. My weight dropped by 30 pounds in three months. I experienced searing stomach pain, felt utterly exhausted and no matter how much I ate, I couldn’t gain an ounce.
... It was terrifying. ... Trying to find the answer, I saw doctors in London, New York, Minnesota and Chicago. ... I was offered a vast range of potential diagnoses. ... Treatments suggested ranged from a five-hour, high-risk surgery to remove a portion of my stomach, to lumbar spine injections to numb nerve paths, to a prescription of antidepressants.
Faced with all these confusing and conflicting opinions, I had to work out which expert to trust, whom to believe and whose advice to follow. As an economist specializing in the global economy, international trade and debt, I have spent most of my career helping others make big decisions — prime ministers, presidents and chief executives — and so I’m all too aware of the risks and dangers of poor choices in the public as well as the private sphere. But up until then I hadn’t thought much about the process of decision making. So in between M.R.I.’s, CT scans and spinal taps, I dove into the academic literature on decision making. Not just in my field but also in neuroscience, psychology, sociology, information science, political science and history.
What did I learn?
Physicians do get things wrong, remarkably often. Studies have shown that up to one in five patients are misdiagnosed. In the United States and Canada it is estimated that 50,000 hospital deaths each year could have been prevented if the real cause of illness had been correctly identified.
Yet people are loath to challenge experts. In a 2009 experiment carried out at Emory University, a group of adults was asked to make a decision while contemplating an expert’s claims, in this case, a financial expert. A functional M.R.I. scanner gauged their brain activity as they did so. The results were extraordinary: when confronted with the expert, it was as if the independent decision-making parts of many subjects’ brains pretty much switched off. They simply ceded their power to decide to the expert.
If we are to control our own destinies, we have to switch our brains back on and come to our medical consultations with plenty of research done, able to use the relevant jargon.
That's a great suggestion, assuming you have a high IQ and your illness isn't cognitively debilitating and you aren't too emotionally discombobulated by being on death's door.
If we can’t do this ourselves we need to identify someone in our social or family network who can do so on our behalf.
That's a great suggestion, assuming your social or family network is full of medical researchers and/or doctors who can give you good free advice on which arcane specialist to choose.
But lots of people aren't that plugged in. What about them?
I've made this suggestion many times before, so I apologize for boring long-time readers, but it's important: You should be able to pay a doctor to help you choose which specialist to bet your life on. That's what I did when I had cancer in 1996-97. Just as I would hire a consultant to help me choose a new email system for my employer, I hired a young general oncologist as my consultant (in the business, not medical, sense of the word) to help me evaluate the three non-Hodgkins lymphoma specialists in the Chicago area.
And here I am, so I guess I got my money's worth. (Actually, I had excellent health insurance at the time, so I got my employer's money's worth.)
I don't really know why this idea is so alien. I've been given the impression that there was something shady and just-not-done about my deal with my consultant. I suspect it has something to do with "professional ethics" -- doctors don't seem to like having patients pit them against other doctors, with another doctor judging them -- but I've never been able to figure out a Google search that would bring up anything relevant to this topic.