“Being diagnosed with a serious illness is like being drop-kicked into a foreign country: you don’t know the language, you don’t understand the culture, you don’t have a map and you desperately want to find your way home.”
I wrote that following a cancer-related diagnosis six years ago that resulted in removal of a part of my colon. One year ago this week I was in the hospital longing for home while recovering from surgery for stomach cancer. Today I am traveling in Spain (feeling fine and minus the drop-kicked part) and am reminded of this analogy every day.
For example, I couldn’t figure out how to punch my ticket on the city bus. The driver told me in Spanish that I barely comprehend to turn the ticket over. No luck. His voice rose: “You put it in upside down.” Again, no luck. He shouted: “Use the other damn machine!”
There’s a man who sits at the front desk at the clinic where I get most of my cancer care. He greets every person who walks past his desk as though he knows her well and is delighted to see her back again, still upright. Ask him a question and he’ll tell you what you want to know, how to get there and will check to make sure you understand what he said, even if it’s as simple as “Radiology is on the fifth floor.” Could be that he’s used to so many of us bleary-eyed post-surgical visitors and chemo-brains trailing our tattered short-term memories; could be that he’s just really good at his job. Whatever it is, he exemplifies the kind of pro-active guidance we need to make good use of our care — in his case, making sure we have – and understand — how to get to the right office in time for our appointment.
We patients are always tourists in the world of health care. Whether we are coming to our doctor’s office to rule out a strep infection, a clinic for a bi-monthly diabetes check-in, or a hospital for surgery, we don’t work here. This means that most of us don’t know the routine practices of the establishment: what we are expected to do, where to go, what information to bring, how long it will take. We need to know all this if we are to get the care we need and if the organization is to run efficiently. This has become particularly important as more of us find ourselves keeping track of the routine practices and care plans of multiple specialists, diagnostic facilities and treatment sites.
How many of the health care sites you visit make this information easy to find? How many anticipate your questions about follow-up care, after-hours care, test results, parking and insurance, for example, and make sure you know where you can find the answers when you need them? Work conducted by the Center for Advancing Health to encourage the use of guides by practices and clinics finds that in most settings, such information is simply not available to patients and caregivers.
While no one has hollered at me to “Use the other damn machine!” during my many encounters with health care, my questions about routine arrangements have often elicited a similar tone and similar barely useful suggestions. And while I don’t expect a charming concierge at every front desk, I believe we are less likely to participate effectively in our care when our questions are treated as an annoying imposition than when we are when treated as welcome tourists who may need help finding the care we need.
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*