The Central Myth of American Medicine

In recent years, there has been significant progress in trying to predict future disease both by statistical and biological methods.  The combination of genomics and artificial intelligence has proved to be quite powerful in moving us along a path that can drive better disease prediction.  I spend most of my working hours with this effort driven by my assumption that early warning will lead to better interventions to fight disease and ultimately to better health.  But I can’t be 100% sure. What if all those predictions only cause anxiety and confusion? I thought about this as I read an article in the WSJ about too much messaging, coming too early dulling our reactions.  This was in the context of storm prediction but similar principles apply in health and disease.  Ultimately, with both storms and impending illnesses, the questions are all about what can be done to either prevent or at least mitigate the potential catastrophe.   Do you want to be able to plan, to take medication to lower the risk, to change your lifestyle? Or will all that information just create anxiety, depression and contribute to a nihilistic type of fatalism?

In the case of storm prediction, the article pointed out that “More accurate data gives more time for emergency planners and residents in a storm’s potential track to prepare. But the long lead-up also can result in saturation storm coverage and social media hype that leads some people to tune out.”

It goes on to note that “continual storm coverage was a source of annoyance for many and led to fatigue for some, adding to concerns that information overload would lead them to miss key communications.”  The earlier the information is obtained and given, the more likely it is for the information to inform, but also the more likely the information will ultimately be wrong. Time is an important variable, and it has a habit of changing things in the weather as in life.  

Health plans, health systems, private companies, and government are all using huge data bases of claims, medical records, genetic data, and anything else they can find to create algorithms or formulas which can predict our future health.  These efforts are having some success, and as someone who works in this area, I expect our abilities to increase. But will we actually be helping by predicting? Will we be contributing to an unhealthy focus on disease prevention instead of healthy living or to a numbing of a message that change is needed?

The questions we are attempting to answer almost appear to have a biblical quality….Who shall live, and who shall die?  Who shall be infirm and who shall be healthy? I am Jewish and will be stating words very similar to these in the Rosh Hashana and Yom Kippur services which are around the corner.  We say this as we pray for forgiveness and hope that in the coming year we will be blessed with health and happiness. It does seem almost God-like to be able to predict in this way.  But it’s important to remember that our predictions are never 100% accurate, and that even if they are, we don’t really know if the predictions will help or not.

The optimists among us believe that these predictions will allow us to intervene and help prevent the diseases before they appear.  The pharmaceutical companies believe that they can develop medications to forestall and prevent diseases before the illnesses express themselves to the detriment of the patient.  Those in the wellness fields believe that changing lifestyles will forestall the “ultimate decree,” as is said in the prayer book for the High Holiday services.  

But we don’t really know, and we also don’t know if we will just be creating undue anxiety and depression.  We don’t know if we will contribute to information overload that does not really help those we hope to impact most.  We don’t know if our new medications and our new approaches to intervention will ultimately lead to unintended consequences that may be harmful.  

We don’t even know how much people want to know.  We do have experience of a sort from the testing for genetic diseases that offer people some predictability.  Huntington’s Disease is a genetic illness and was one of the first genetic diseases for which there was a definitive test to see if someone was a carrier, or likely to have the disease.  It is a disease in which brain cells are killed and which leads to death. Since we can identify people who will likely develop the disease, it is informative to see how often people want to know.  A review from the BMJ showed that only 10 to 20% of those people at risk for Huntington’s Disease end up being tested after being approached and offered genetic testing.  The other 80-90% prefer not to know.  

Perhaps they are right.  After all, life is not about avoiding illness.  Rather it is about enjoying your time on earth and making a difference to those around you.  While health is a central element, it is not the only element. Living your life with a focus on avoiding disease may be the right decision for some, but for others that focus on disease may prevent them from focusing on family and friends. 

All that is not to say our prediction efforts and our attempts to decrease health risk should stop.  It certainly is a big part of what I do every day and I am proud of my own work and believe it can improve people’s lives.  All this brings me back to the title of this blog post. The central myth of American medicine is that Death is Optional. It is not.  Life is a fatal disease. I for one believe that the efforts to predict disease must be tempered by the knowledge that we must use predictions to help people live the lives that they want to live until the moment they die and allow the focus to be on living rather than disease prevention at any price.  I question whether the desire to tell everyone everything about the future may end up making us sicker than we started.