Patients often lack a framework for thinking about health care


In the summer after I finished first grade, my family moved to a house located about an hour's drive from our last one. I had learned to read that year, and over the summer I polished off the entire Bobbsey Twins series, the entire Hardy Boys series, and so forth. The first day of school, I was excited to find out what they would teach us now.

After the preliminaries, the teacher gave us a crossword puzzle to complete. I was perplexed to find that none of the clues made any sense to me. I glanced around the room; everyone else seemed to be busy filling in the puzzle's little squares with no problem. How could 32 other children my age know all the answers, when I didn't know any?

I was suddenly very scared. Was this how the whole school year was going to go? What was going to happen to me? My paper was a mess: my words had too many letters, and the page was marred with frantic partial erasures in every across and down space. When the time was up, I was devastated. After the teacher saw my paper, she called me up to her desk. I was sure that I was in big trouble.

She asked, "What were the names of the children in your reading book at your last school?"

"Alice and Jerry," I said promptly, relieved to finally face a question I could answer.

"I see. Don't worry about this crossword puzzle. In this school, the children in the reading books are named Dick, Jane and Sally."

Well, of course I couldn't figure out answers to clues like, "Dick's little sister is named -----" (five letters) when I'd never heard of either Dick or his little sister Sally.

To make sense of the situation, I would have had to understand, first, that the clues related to a reading textbook, a fact that the teacher hadn't mentioned up front; second, that public education is organized into school districts; third, that my new home was in a different school district than my old home; fourth, that textbooks vary by school district - that textbooks, unlike I Love Lucy or "Jingle Bells" or The Hardy Boys, weren't the same everywhere; and fifth, that my failure had nothing to do with being stupid or not trying hard enough - it had to do with changing school districts.

What does that traumatic experience have to do with health care? When patients enter the hospital, they are entering foreign territory. Everything they know is equivalent to being well versed in Alice and Jerry when the people who work there are attuned to Dick, Jane and Sally.

Patients typically don't know who is in charge of their care, when lunch will come, what's going to hurt after surgery, who the person in the next bed over is, what drugs they're being given, the point of various tests, when they're going to be able to go to the bathroom, who will come when they press the call button, or other key facts that directly affect them that the people who work there take for granted.

Don't think for a minute that your bewilderment says anything at all about you. It doesn't have anything to do with you, or your ability to organize a company, a church group, a sports team or a family vacation, or to manage your money, take care of your children or hike to the bottom of the Grand Canyon. You've simply landed in foreign territory.

It's no more possible for someone unfamiliar with the health care system to be able to deduce what is going on than it was possible for a seven-year-old to know to ask, "Are these clues based on a reader? Has the school board here chosen readers different from those in my last school district?"

The failure is not yours. The failure belongs to a health care system that promises to improve your life and then disorients you so completely - failing to build clearly needed bridges from your usual life to the health care setting you've landed in - that it can be a challenge to understand how to play a meaningful role in your own care.

To tell your story, propose a topic, or ask a question, write to Bewley's latest book, a collection of 40 articles from this column, is available locally at Hastings and at Peregrine Books and online at Amazon. It is titled "Not Your Grandmother's Nursing Home: Demystifying Today's Retirement Living Options."

Elizabeth L. Bewley