“Why would he want to live like this?”
It was his first visit to the office, yet I was taken aback at the extent of his suffering. Wheelchair bound after a stroke, unable to speak or walk, it seemed to me his was miserable existence. Even worse he had a chronic bone infection that could not be cured, a continually seeping wound that caused persistent pain. And then there were the bedsores, I wondered why he hadn’t yet given up.
In spite of this his wife assured me that he had a good quality of life. She told me that he enjoyed his kids and grandkids and took great joy in his time with them. I wondered how this could be true. At that visit (and the several that followed) he seemed subdued, almost depressed. At each visit his interaction with me was minimal, only an occasional nod or mouthed word. I never saw a smile or heard a laugh. My heart broke for him.
A year later I made a visit to his home. It was difficult for his wife to bring him to the office and I had offered to come to the home to check on a wound for which he was receiving treatment. It was the least I could do.
His wife met me at the door and escorted me down the hall to their bedroom. He was propped up in bed, leaning against several pillows. He looked up when I entered the room with a response that was shocking to me. To my great surprise, a huge smile spread across his face and he enthusiastically extended his hand in greeting. He was happy to see me! An involuntary smile came over my face as I took his and shook it. I told him it was good to see him, and it truly was.
As I shook his hand I took a moment to survey my surroundings. On the walls of his room I were many framed photographs of him in dune buggies and go karts. He was a car nut! Every vehicle pictured was one he had built himself. I had no idea of the man he had once been. It was clear that he had lived a very active life. I commented on the pictures and asked a question about his interest. My surprise increased when he replied. he gave a one word answer but the word he spoke was clear and appropriate. I cracked a joke, and his laugh was full and genuine, his smile infectious..
His wife told me the stories behind some of the photos, at times turning to him to verify she was getting each tale right.. With nods and occasional words, he agreed with most of her descriptions and made it clear when he didn’t. As she talked and he responded I realized something- he was truly happy. He was able to communicate with the woman he loved, and the family he adored. He participated in the conversation, and even made me laugh. His life was better than I could ever have imagined.
It was a humbling experience for me. My initial impressions and conclusions about his life and functional abilities had been totally wrong. The judgments I had made in the office, arrogantly made over the course of brief interactions, were completely inaccurate. I realized that if I had not visited his home I would never have known him or understood him.
I left his home a different doctor than was when I entered it. I entered certain of my ability to make assessments regarding the quality of a patient’s life. I left realizing my foolishness, newly aware of the importance of seeing a patient’s quality of life first hand before reaching conclusions. It was a visit I will never forget.
There really is no place like home.
Bart