The best thing about being able to write a sentence about your oncologist and your cardiologist in the same sentence is being able to write those words thirty years and ten years after the fact.  American healthcare is alive and kicking and so am I.

One area where I think we may have missed the boat with regard to patient experience management is that patients do not wish to be managed.  If anything, they are over managed.  Patients are told what will happen, when it will happen, and what they can do.

For the most part patients visit hospitals infrequently, at least when compared to other services they consume.  That means their expectations are going to be vaguer, and are likely to be formed on the fly.

When I was being treated for cancer, my expectations were set on the fly, and my expectations and concerns for what I would experience increased day by day and with each visit.

Nobody ever asked me about my expectations and whether they were being met.  I took that to mean that they did not care, and that it was my responsibility to communicate what I expected.  Mind you, I was not asking for or expecting the moon.  As far as beating cancer was concerned there was never a doubt in my mind that everyone with whom I interfaced at the hospital would do everything they could to make that happen.   Discussion over.

From the perspective of the hospital, one’s responsibilities and activities as a cancer patient are very limited.  Arrive, insert the IV, leave after five days—BTW, do not forget your wig.

I had four inpatient treatments each lasting five days.  I drove myself to the hospital and unceremoniously handed over control of my life.  By the end of the first round of chemo, even knowing everyone there was doing their utmost to save my life, I felt it necessary to take back any semblance of control I could muster.

There is a reason every flight from an airport is scheduled to depart and arrive at the same time.  There is also a reason that hospitals require that your vital signs be taken at a time while most roosters are dreaming about the henhouse.  With no disrespect meant to myself, I am convinced a consultant was involved in both decisions.

Where were we?  Expectations.  My expectations.  Patient expectations.  Since nobody asked, I took it upon myself to make my expectations more visible.  Rule number one about chemo; wake me when it is over.  Do not wake me at five AM to check my vital signs. Do not wake me at 6 AM to ask me to make my menu selections for the day—we both know nothing you are offering for a chemo patient comes with hot sauce, and I will not be able to retain anything I eat longer than it took you to awaken me.

My expectations.  When I checked myself in for week two my first activity was to hang a sign on the outside of the door to my room informing everyone who could read; since I just spent the last eight hours trying to sleep through the effects of chemo, do not wake me to ask how I am feeling.  If I am able to sleep through the next five days let me sleep.  Do not wake me to ask me what food I wish to order that I will not be able to retain.

This actually worked.  I had no idea I could have a say in my care, no idea that I could pretend to be in control of my life even at some minuscule, visceral level.  My world had imploded, my hair-my hairpiece—was resting on a Styrofoam bust by the sink, but if I want to regurgitate Peking duck instead of fat-free, salt-free, taste-free Jell-O I could make it so.

By now, like you, I am wondering “What’s his point?”

The point is this.  Most patients have spent much less time in a hospital than they have spent spelunking in Antarctica.  Patients do not know what to expect.  The fact that patients do not know what to expect does not mean that they do not have expectations.

Patients expect their expectations, right or wrong, expressed or implied, to be met, to be important, or at a minimum to be considered and listened to—sorry for the preposition.  Everyone at the hospital hopes the patient has a good experience.  I am certain that everyone at the hospital works diligently to help ensure that the experience is positive.  But…nobody knows the expectations of that single patient.  And without asking, how can anyone hope to meet the expectations of a single patient; of every patient.

Hotels seem to have waddled through the conundrum.  Granted, hotels are not in the business of saving lives.  What hospitals do is far more important and does not deserve the scrutiny of which newspaper you want delivered to your hospital room’s door every morning at five AM…or does it?

Needless to say, the one thing nobody wants is frequent flier miles for staying at the hospital.  That said, are there other things that can be learned?  How can any organization expect to meet their customers’ expectations without knowing what those expectations are?