Picture this: a lone hiker on a windy, somewhat treacherous mountainous path strides purposefully forward, clearly at home in the woods. You watch him stop in front of a large tree overlooking a vista. He suddenly hoists himself up, scales the trunk, and settles onto a large branch to enjoy his lunch. It is only when he comes down and passes by you on the path that you realize he is blind. Totally blind. Why is this startling? Because it does not fit our expectations. And yet this man, named Daniel Kish, does not think he has any extraordinary talent. He lost his sight at 13 months of age when both of his eyes were removed due to cancer, and instinctively learned “echolocation” or the ability to understand spatial relations and objects by the way sound bounces around, similar to a bat. His mother could tell that he was rambunctious and meant to explore, and so did not preach pre-set expectations about what a blind boy can- or cannot- do. From a young age he used clicking sounds to navigate, climb trees, and even ride a bicycle around town as easily as a sighted person (you can check it out on YouTube). He is not the only blind person to have perfected this skill. Trevor Thomas went blind at age 35, and learned echolocation to be able to hike the length of the Appalachian Trail. Solo. He is now a professional hiker and among his many activities, he joined forces with a friend of mine to partner with the Boy Scouts for hiking and camping trips for sighted and blind boys (check out the Far Sight Foundation).
“People ask me: Why climb if you can’t see what’s there? I can’t see the view, but I can feel it. I use my other senses to take in a mountaintop. I think of the smells, the wind, the sun on my face. That summit is the most beautiful thing I’ve ever felt….Blind people are not blind until society and the system convince us we are” –Trevor Thomas
His story reminded me of one of my favorite childhood books, the Phantom Tollbooth. In the book, a bored and woebegone boy discovers a tollbooth that allows him to cross into a strange and wonderful world filled with adventure. When he arrives in the land of Expectations, he learns he must go on a quest to save two princesses. He is given some basic instructions, as well as a warning that there is one piece of information that he cannot be told. The boy meets friends, foes, and challenges along the way, and in the end is ultimately successful in saving the princesses. It was only then that he found out the missing piece of information about his quest: that it was impossible.
So how do we apply this to health care? Are we setting the right expectations for our patients, especially our children with chronic health conditions? Or are we diminishing expectations by either stating or implying that certain challenges are impossible, and not allowing them to show us otherwise? Equally importantly, when we measure patient outcomes, are we always using the correct measuring stick? Or are we sometimes using one based on lesser expectations? There is a well developed set of literature on how expectations affect outcomes both positively and negatively, and specifically how that influences patient response to treatment, satisfaction with a health care encounter, or health care resource utilization. There are many important ongoing efforts to measure important patient outcomes in health care right now. For our subset of children with chronic health conditions, in addition to discrete measures to assess treatments and present quality of life, are we also thinking about ways to assess optimal outcomes?
In Charles Dickens’ famous book Great Expectations, the main character, Pip, is given the means to rise from poverty to become a gentleman. He initially thinks this means to adopt the clothes, mannerisms, and company of the social elite, and only later discovers that a real gentleman is one who lives up to his own internal best self. So when we measure patient outcomes, do we know if we are capturing this best self?
It may not be easy to define or measure, but we need to be thinking about great expectations in health care. I now think about this every time I see someone ride by on a bicycle, and wonder what they see.
“Expectations is the place you must always go to before you get to where you’re going.” -Norton Juster, The Phantom Toolbooth