I was recently asked to talk about the patient view of liver disease by a group known as ICER, A nonprofit group that studies fair drug pricing.  They are working on how drugs for #NAFLD and #NASH might be priced.  The team includes a wide range of expertise which includes some doctors and during the discussion I talked about the fear people experience when diagnosed with cirrhosis or stage 4 NASH.

I was surprised when a primary care doc reported that he didn't see that much fear in his practice which made me wonder why our views of the average patient response was so different.

I think the answer lies in the nature of the relationship.  When we go to a doctor we are dealing with a power figure.  We hope for solutions to our  troubles and we want the doctor to think well of us and to help us.  We want to be a "good" patient and we are more likely to do our best to present our problems and to listen respectfully to what the doctor has to say.  It is a process which engages our attention. Most of us, even if we express our fears, will be reluctant to try to describe or act them out in front of the physician so it has an element of intellectual control even if fear grips us in the doctor's presence.

The comment made me think about my own experience.  I'm a technical person.  I spent my life dealing with science and complex subjects where analyzing problems was the ordinary business of the day.  A hobby of mine is reading physics books.  A few years ago I helped edit a book about theoretical physics seeking to reconcile quantum mechanics and Einstein's theory of relativity.  Conceptually I should be a very good patient for a doctor to be able to explain a disease to, but I remember feeling ungrounded and struggling to understand as a very earnest doctor spoke carefully to me about hepatocytes, steatohepatitis, ballooning, and inflammation.  I was a good patient. When he asked if I understood I said I did.  Did I have any questions? NO.  Clearly a superior doctor patient exchange.

I think I even thought I understood at the time, but when I started to look things up on Google I was shocked.  Over a few days I went from feeling like I had a grasp of things, to looking at words like "end stage liver disease", "mortality rate", "de-compensation", and the world changed.

I can understand why doctors might feel that they see less fear from patients than the patients report privately or in the safety of a peer group.  Fear stalks the silent times.  Fear comes at night, when you are alone in your thoughts.  When you begin to imagine a future of prolonged illness and wonder what ascites and hepatic encephalopathy are really like.  It stalks you as you think about the ones you love and what is going to happen to them.  Doctors don't visit those times and few among us can or will expose those profoundly personal aspects of ourselves.  Many hide those fears even from those around them who are the closest.  There is a private place where those feelings live and for most, keeping them imprisoned is a self protective response, but they have a way of leaking out in the quiet times, as you think about the death of the future you thought you had and contemplate a very different road with chronic progressive disease.

Our medical system is flawed in the way it has evolved to deal with specific organs or definable disease states in very specific ways, and it is becoming very good at that. Along the way we have lost the connection to the whole person.  We have become that liver down the hall, or that drug seeker, or that breast cancer.  It is a bit strange to realize that the modern way we are considering patient care is that it takes a care team.  Somehow, we should all have access to a small army of specialists who can coordinate our care and make sure the entire patient is cared for.  We aren't willing to pay for that, of course, so it is reality for only a few. For most of us the bargain we have made with our doctors is that of a fragmented connection with wide gaps that our basic human needs, like how to adopt new lifestyles or how to manage the fear, are simply left to us to discover for ourselves if we can.

The only solution I see is to develop stronger peer to peer support groups.  As patients, we must help ourselves as medicine is fragmenting into a maze of specialties that is simply not equipped to deal with the personhood that sits before them.