I was recently pointed to an essay on the perception that our country faces a “Death of Expertise.”. The scary part is the article was written in 2014. As we now seem to live in a world of facts and alternate facts, I am becoming more and more aware how limited our perceptions are when it comes to our ability to discern actual reality. The lines blur, and worse the titles we use to convey a sense of expertise are often cheapened by those who benefit from “alternative facts.”
As a patient advisor to the American Board of Internal Medicine, I find this article on the Death of Expertise relevant as we begin to embrace patient centered care. We are looking at the impacts of the patient becoming a partner in their healthcare rather than a subject upon whom the art of medicine is employed to better their health. It’s interesting to me because I find myself frequently commenting to the doctors there is no way most patients know enough to really understand the impacts of a treatment on their health as a whole. We know what we experience, and we tend to assume what did not happen could/would never have happened to us. Many have little or no understanding of likelihoods, especially rare ones. Our minds are not primed to understand such information. As a result, preventative care can be a very hard sell, and it takes only a little bit of fear mongering to send us down an anti-vaccination route.
Of course, our body is a complex system (note: different from a complicated system that it also is). We are still learning the down stream implications of many of the things we do to and with our bodies. I recently gave a presentation to doctors, insurers, regulators and patients on patient generated data and how we can use it. It is “big data,” a term very few understand. Big data is simply data collected from many sources, collected for different purposes and then used as if one data set. We can use it to assert a position or confirm a position, and we are already doing both. We are just in the infancy of understanding how best to use the huge trove of information, and one of the challenges is pulling in most uninformed perspectives into something useful.
The ability to gleam and present such insights is where I predict the next generation of experts will arrive. The best of them will be able to sift out the trash to present and stay current with the overall trends. The hard part is recognizing the limits of our knowledge. The Dunning-Kruger effect is real, and ironically one mentioned at the last board meeting. When it comes to medicine, we have the added frustration coming from double complex system issues around both the complex system that is our health and the overlapping yet distinctly separate complex system that is our emotions about our health and healthcare.
Still, we are coming a long way at a fast pace. As our traditional study based medicine is either directed or confirmed by huge amounts of data, our knowledge is refined faster than ever. Heck at the last meeting, the doctors were talking about the study in Stroke showing an increase in strokes and dementia for people who drink one or more diet soda a day. It was mind breaking to them, and they were shocked by my only mild surprise. I told them I stopped drinking coke zero because my headaches were worse, and when I switched back to regular coke I looked at other patients’ info. I was far from alone across neurological conditions to note worsening symptoms on diet sodas. As a result, I was less surprised than they at a link between diet sodas and neurological issues. My knowledge was not based on a formal study, and I would never present it as fact. However, a smarter person could have made the connection and presented a decent level of proof from expanding the small amount of research I did, and they could present something I would believe as much as my doctor telling me. However, I need the doctor to tell me which of the millions of “facts” and “alternative facts” available to me are most likely to help me feel better and live the life I want to live better. Alas, I do not have the base to make such distinctions well.
That is why I need a doctor. What’s more, that is why I need the term doctor to convey a level of current expertise. It is why I endorse the idea of a body of “experts” who can set a minimum bar to be called an expert in their field. Note that is what the American Board of Internal Medicine is. It is a group of doctors (experts) who say to be accredited with them, a doctor must know X.
Alternative facts … truths hidden by planned distractions … no sense of what ‘the common good’ or ‘the commonwealth’ once meant to ethical people… the bravado of ‘how hard can it be’ …
Three days before shoulder surgery, Rick had a treadmill stress test. As he went off to the test, I said “Please don’t let them kill you, love.” He passed the test without difficulty. Two weeks after the surgery we met with the surgeon for his followup view. He complimented us on how well the site had been taken care of, and said he could start conservative physical therapy after the holiday. Three days later, on Christmas morning, Rick died of a massive coronary infarct, despite CPR that began the moment he closed his eyes and stopped breathing. Blood clots were a known side effect of the surgery’s resulting limited mobility. He’d signed the consent.
Am I jaded? You bet. Do I blame the human’s involved in the surgery? Not at all. Do I blame Rick or myself? No. Do I wish he’d never had the surgery? No, he needed it to address pain. Can I agree that the surgery was ‘a success but the patient died?’ Sadly, so many of us accept that. What else can we do?
I’m done with medical interventions, and will opt myself for pain treatment when needed without surgical interventions. I’ve signed my last consent form for surgeries. I’m ready to all an end to come. I’m not going to cause one.
I am so sorry to hear about your husband. I can only imagine losing my wife, and on Christmas no less. You always spoke so nicely of the symbiotic relationship you two lived. It seems hard to remember all the things we do with our loved ones much less fill the holes they leave. Yet I hope you still find some meaning and joy left in this life that so often feels unfair.