Needing to Know

It has been a difficult and emotionally wrenching seven weeks that feel like so much longer.  From the day I got the call from my cousin telling me she was “in trouble” with her health to the day she died, every day included phone calls with her, with the social worker, with the doctor, with the nurses on various shifts.  The intensity of end of life care is not unfamiliar. The fact that I did not realize how ill she was, prior to that phone call, made it feel to me as if we were going from 0 to 1000 in an instant.

It was impossible for me not to have high expectations for her care, after all, this is where I live my professional life every day.  And, in many aspects, the care she received was good and many of the professionals were caring and responsive and fully engaged.

I understand that someone who is ill, someone who has cancer throughout their body, is not the best version of themselves.  None of us is at the top of our game when we don’t feel well and, especially, when a terminal disease is winning not just the battle but also the war.

It disturbed me greatly when I had conversations with staff who really did not know or understand who their patient was.  It disturbed me more to feel that some of them had no real desire to know.  I found myself explaining, over and over again, that she had been a social worker, that she was a well-educated professional, that she was an articulate and sophisticated individual and so much more than the anxious patient in room 30.  One evening, very near the end, the nurse called to tell me that she’d thrown her meal tray off the bedside table, that her agitation required two people to calm.  And I found myself saying “That is not who she is.  She is, and has always been, the definition of ‘a lady,’” asking them to look beyond the behavior to the cause.  The agitation, the anger, the loss of control—those were byproducts of the disease in her brain but also indications of how alone and how afraid she was.

It is easy for us to label someone as a “problem,” to classify them as having “behaviors.”  It happens all the time.  We are focused on the symptoms and not the root and we see the individual as a room number, a diagnosis, a task and not a complex, multi-faceted human being who is struggling.

In my organization we spend a lot of time talking about the need for “deep knowing” of those we care for, of understanding not just who they are at this moment but who they were, what their lives were like, what mattered to them.  Regardless of whether we deal with elders or others, I believe that those of us who provide healthcare must remember that this is care for individuals. Each of them must be truly seen, understood and treated as such.  Each of them, each of us, is entitled to be known, no matter what our age or stage.  Each of us is entitled to the dignity and depth that brings.