Anyone who’s ever watched me present on The CCRMC System Redesign has heard me speak of my father. In my blog entry on his birthday, I disclosed how disorienting the experience of being a ‘daughter at the bedside’ was for me.
“I tried to keep up as the teams rounded on him. It seemed so odd that after all the time I had spent in a hospital, I hadn't a clue how it all worked. I couldn't figure out who was in charge of which part of his body. I couldn't keep up with his deteriorating health and growing amount of health care intervention.”
It seemed in just a few short weeks my father went from being a strong independent man who always knew best, to a person reduced to a diagnosis, a set of complicated and ever-changing presentations. He became a man who was dependent on a system of care surrounding him that didn’t seem to truly grasp how far away he was from himself. After knowing him my entire life, experts began to redefine him in terms I would have never considered using to describe my father: the Acute Renal Failure (I even heard them say ARF); the pancreatitis in 12; confused, demented, elderly. Sometimes (I believe in an attempt to reassure us) we were told “for his age this is common.” It was anything but common. It was absolutely unique for him and for us as a family.
I remember my Dad’s last Father’s Day. He was in the hospital and I gave him a collection of CDs. It was an audio collection of mystery radio. When I was a young girl, my mother went to law school at night. My dad and I would drive 30 minutes to the school and sit in the car waiting for my mother to get out of class. We would listen to Radio Mystery Theater with E.G. Marshall. It was an attempt at radio show revival during the 70's. During the show, we would try to guess who committed the dastardly act. I would "rest my eyes" in the last 15 minutes but I would pretend I was awake the whole time and my dad always played along. The show would end about 15 minutes before my mother actually came out. My dad and I would explain our rationale for choosing the suspect and almost always our conversations would wander.
We traveled very little, we were a big camping and hiking family. I always wanted to see the great cities of the world, so my dad would tell me a story about a place he had gone when he was in the military. He would recall little details which didn’t often reveal very much about the place of interest, but revealed a tremendous amount about his experience of being there. He would describe how warm or cool the wind was, the smell in the air, colors people were wearing, what the food tasted like, and the feel of the ground under his feet. His stories were always my favorite part of the day. If ever I asked for him to tell me about a place he had been, he would always, without fail, deliver. He was a great storyteller.
If the truth be told the radio show CD's were probably more for me than him, but as always, he played along. I placed the CD in the portable stereo I had brought from home. I think he quite liked the idea, but didn’t really listen, because I don’t think he felt well enough. He drifted in and out of sleep. His nurse peeked in the room and motioned to me she would come back. She softly shut the door and at that moment every monitor, hall conversation, ringing telephone and supply cart rolling by faded into the distance. It was like sitting in the dark parking lot in our family car, I and my dad and Radio Mystery Theater, just as I remembered. When the show was over my dad opened his eyes and said “I knew who did it the whole time.” He smirked because we both knew he had no clue, he was fast asleep. He asked me how school was going and I told him all about Parnassus Campus (one of my favorite places). I shared little details about Millbury Union, the beautiful fog that seemed to linger all day, and the great library. He said he remembered it well, calling it “the crossroads of the world.” He complained that no one goes anymore and soon young people will not understand the silence of the great rooms of knowledge and the smell of old books. The nurse came and went and my dad drifted off to sleep. I did too, I was exhausted.
While walking through the medical center tonight I reflected on Don Berwick’s plenary speech at the 2009 International Forum on Quality and Safety in Health Care in Berlin. He believes that we would all be better off "if professionals (us) would behave with patients and families not as their hosts in our care system, but as guests in their lives.”
We can count how many patients are in the hospital, but how many lives are we really touching? So many people make up our experience of living: people whom we can delight just by slowing down from our hurried pace and taking a moment to listen to them with an aim to understand what they are telling us; people whom we can disappoint, because too often we assume we know what is right and we define them relying on our experience as a professional, rather than on their experience as a unique and vibrant individual with stories and experiences that far exceed anything we will have the privilege of knowing.
I thought about the nurse who shut the door for my dad. A gift from her to us. No more monitors, no more call lights, no more ringing telephones, just me and my dad and Radio Mystery Theater, just as I remembered. She took the time. She gave us respite from the unsettling experience of being in a hospital. She gave us a moment of peace and quiet on our last Father’s Day. On that night, that nurse not only cared for my father, she touched my life too.
It was great to see so many of you tonight. It's been too long.
Happy Father's Day
Continuum of Care on WIHI
10 hours ago