What happens when a distinguished professor comes to a doctor as a patient? This is no ordinary patient. Although she is not a medical doctor, she does have expertise in statistics. She is able to read and analyse research concerning her condition critically. This transforms her into a very informed patient. Some parents with ASD children are similarly well informed by the time they see their paediatrician for advice. Often they are better informed than the doctor – this becomes a problem.
This 2013 essay in the Atlantic makes for very interesting reading, Thinking About Pregnancy Like an Economist – How it became clear that I needed to sort through the valuable, and useless, information — on alcohol, prenatal testing, deli meats — for myself. Emily Oster, then an associate professor in economics at the University of Chicago, wrote about the poor state of pregnancy care she experienced. The pregnant professor thought that medical decisions would be made in a similar manner to making economic decisions:
- there would be a choice – not a decree
- accurate data would be presented with positive and negative choices
- in the end her preference would guide the final decision
What she experienced was nothing what she expected nor was prepared for.
“What I didn’t expect at all is how much I would put the tools of my job as an economist to use during my pregnancy.”
She writes about what she expected from her doctor when decisions had to be made about her pregnancy care.
“Take something like amniocentesis. I thought my doctor would start by outlining a framework for making this decision—pluses and minuses. She’d tell me the plus of this test is you can get a lot of information about the baby; the minus is that there is a risk of miscarriage. She’d give me the data I needed. She’d tell me how much extra information I’d get, and she’d tell me the exact risk of miscarriage. She’d then sit back, Jesse [Oster’s husband] and I would discuss it, and we’d come to a decision that worked for us. This is not what it was like at all.”
What this expert in decision making found was:
Misinformation: Medicine contains a plethora of arbitrary rules. Rules become entrenched without any basis in evidence. (Currently also think low-fat diets!)
“In reality, pregnancy medical care seemed to be one long list of rules. In fact, being pregnant was a lot like being a child again. There was always someone telling you what to do. It started right away. “You can have only two cups of coffee a day.” I wondered why–what were the minuses? What did the numbers say about how risky this was? This wasn’t discussed anywhere.”
Oster writes that, in the worst case, the advice of doctors runs counter to the evidence. In other cases, advice is given from shoddy evidence.
“I tried going a little closer to the source, reading the official recommendation from the American Congress of Obstetricians and Gynecologists. Interestingly, these recommendations were often different from what my doctor said–they seemed to be evolving faster with the current medical literature than actual practice was.”
Failure to consider patient preferences: Oster discusses how equally educated people feel differently about risk. Sometimes it isn’t a question of right or wrong but what is right for you.
‘I looked at the evidence on the epidural, combined it with my own plus and minus preferences, and decided not to have one. My friend Jane looked at the same evidence and decided to have one.’
Imbalance of power: Power tilts the doctor’s way because they are the presumed experts.
“When it came time to think about the epidural, I decided not to have one. This wasn’t an especially common choice, and the doctor told me something like, “Okay, well, you’ll probably get one anyway.” I had the appearance of decision-making authority, but apparently not the reality.”
Oster raises an interesting issue: When you educate yourself about the methodology of science and look at medical studies with an eye for critical appraisal, it becomes clear that doctors don’t know as much as they think they know.
Know the evidence: Doctors should know the evidence – not the blind acceptance of evidence from key opinion leaders or pharmaceutical representatives – the actual research. Medical literature and its media coverage is expanding; critical appraisal has never been more important. Conversely, patients often have a vested interest in researching their own issues. When it come to their children’s health some parents are exceptionally well researched. Therefore, doctors should respect that these patients/parents bring a wealth of knowledge to the consultation and should be listened to with an open mind.
Embrace uncertainty: A doctors training is extensive, especially specialist training. This brings knowledge, specific skills, and experience. However medical research is constantly changing medical thinking. Doctors traditionally are very conservative and resistant to change. Often doctors continue to practice what they learnt ten or twenty years ago. They are not keeping up with the current research recommendations. Medicine has a history of medical reversals so there is a need for doctors to be open minded. The best doctors are those that are open minded and take the time to take a critical look at the actual research themselves.