Thursday, September 27, 2007

Katherine--On a long day

As exhausted as we both are, I am impressed by the collegiality amongst the doctors. I have never seen the degree of voluntary interaction between specialists that we both have seen at the Mayo Clinic. It really seems that the problem is being approached from all the relevant angles. With the database that the doctors have at their fingertips, all the test results can be accessed by any of the doctors at any time.

Having said all that, the Mayo Clinic suffers from all the problems inherent in a bureaucracy. Think J.K. Rowling's Ministry of Magic, the scene from the afterlife/hell in the movie Beetlejuice or The Hitchhiker's Guide to the Galaxy--complete with Muzak piped into every waiting room. It is truly surreal. At times I feel like we have entered a Salvadore Dali painting with a "sensible" Midwestern bent.

Here is an example of how a bureaucracy can be evil, without really meaning to do so. The first thing you do when you get to the Mayo Clinic is you have an appointment with an internist who will serve as the "hub" of the wheel, gathering and helping you interpret data. The internist does an intake and his office schedules the first available appointments with specialists and schedules testing. As a general rule, the testing (i.e. bloodwork, x-rays, etc,) is scheduled within the next twenty four hours. The appointments with specialists, however, may take some time.

Charles' first appointment with the neurologist originally was scheduled for next week. (Arguably, this was the most important appointment we had scheduled at the Mayo.) Since we did not want to set up residence in Rochester for any longer than necessary, we could go to the neurology area and be "checkers" waiting for someone to cancel, allowing Charles to be worked into the schedule. That is what finally happened on Wednesday morning, but not until we had waited eight hours in the waiting room on Tuesday.

This is where the bureaucracy takes over. An obviously ill and elderly lady laid on the couch almost all day waiting with us in the waiting room as a "checker". She finally gave up with thirty minutes left to go and we got the last minute cancellation for the next morning within that last thirty minutes. I felt really guilty after my admitted exultation at getting Charles seen by the neurologist. Sometimes this week, I have felt like our relative youth and reserve of stamina has worked in our favor. At the same time I have been offput by the assumption that the patients who come to the Mayo can all afford to stay awhile and all the implications of that assumption of being well to do and subsequent access to healthcare....After the experiences of the last few weeks, I am more convinced than ever of the need for healthcare reform. I really have been left with a sense of "there but for the grace of God go I."

Speaking of grace for the unworthy, I am extremely thankful that we have good health insurance and for all the help we have received in getting Charles this far. There is no way we could have gotten this far on our own. People have been so generous with their time, their financial help and their emotional support. Thank you all for helping us make sure that Charles stands the best chance possible of getting an answer. All kvetching aside, we are extremely fortunate.



Anne said...

When you find a good way to fight for a better health care system, let me know, and I will join you at the barricades! Years ago, Etienne was really sick, and in the only hospital where my inferior health insurance policy would send him, he was getting inadequate care and was worse every day. Only with the help of family and influential friends was I able to pull him out and put him in a good hospital, and he got better. It is hard to remember the faces of the mothers in that other hospital waiting room who had no such choices ... and I can never forget what it feels like to be trapped, without power or voice, in a system that doesn't care. We really do have to do something.

Mary in Bahrain said...

I'm so glad to hear you are pleased with what's happening at Mayo and that the docs are working together well. Anyone who has had to deal with multiple doctors at one time (my Dad) knows who important it is for them to communicate effectively, with each other and with you.
We continue to pray for you and the whole family, for resolution and healing. Get some rest!