Everything I knew about how to behave in a hospital I learned from watching "ER." At the fictional County General Hospital, the most helpful thing a family member could do was stay out of the way. So when my husband was in the ER, I even moved my chair closer to the corner of the treatment room to be out of the way of staff taking care of my husband. This would prove to be an ineffective strategy.
My husband had an uncommon cause of massive gastrointestinal bleeding. In his five days in the hospital, he got seven units of blood. Twice, staff missed orders for blood. The first time, the order may have been lost during the hand-off from the emergency department to the regular floor. Three hours after the transfer from the ER, my husband crashed, and he was moved to the intensive care unit.
The next day, staff missed another order for blood. You might be thinking, "This woman is stupid. After the first missed order for blood, why didn't she keep better track?" I know! But we were now in intensive care. Doesn't that mean "the best"? Aren't orders entered in the electronic health record, and aren't there alarms when treatments aren't done? Shouldn't I just stay out of the way of the high-tech systems and the smart people?
If you ever find yourself in the role of patient support person, you might be handed a patient handbook. Chances are it will not give you the kind of guidance you need to be effective. You'll see information written at far too high a reading level ("You, your legally authorized representative, or any person authorized by you…"). You'll probably find a list of television stations. Buried on page 20 or so, you'll see bullet points from the Speak Up program. S is for "Speak up if you have any questions or concerns." Because I did not write down the orders for blood, I didn't know staff had missed them and did not have concerns.
Hospital executives, please listen. We are untrained and underslept, scared and stupider than we are in regular life. And we're passive, because we want very much to believe that the doctors and nurses have the situation under control. Exploit our weaknesses. Give us a framework that will help us come up with useful questions and essentially order us to use it. I believe it would result in fewer mistakes and shorter hospital stays.
At the centerfold of patient handbooks, I would like to see a fill-in chart with these columns: Time, What was ordered, Who ordered it, Call nurse if not here by. Stick a pen in the centerfold and hand it to the patient or family member. Have doctors follow a script: "Do you have your patient handbook? I am ordering [medicine, procedure, lab test]. I'll spell it for you. Ask your nurse if it is not here by X."
This patient handbook would be passed between shifts of family members. Daughter: "The doctor is trying this new med — can you read my writing? It's supposed to be here by 8 o'clock at the latest." Son: "OK, got it. No, Mom, we aren't fussing. The doctor told us to keep track."
What shall we print at the top to encourage families to use the chart? How about: "Hospitals are working to reduce medical mistakes. You and your family need to help us."
You think that will freak us out? I don't agree.
Years ago, I went up in a small plane with skydivers, just to watch. I was nervous. The skydiver leading the group had me put on a parachute, as required of everyone in a plane that size. Then he told me, "If something goes wrong with the plane, the pilot will go down with the plane. Pilots never jump. If he tells you, 'Jump,' you need to jump. Here's what you do: Jump, count to three, look down here, take this ring in both hands, and pull. Got it?"
You might think that would have paralyzed me, but it was the opposite. I felt so much calmer. He didn't say, "Nothing bad will happen." He told me the truth and showed me how to save myself.
Marie McCarren is a medical writer specializing in plain language, diabetes, and clinical trials. She lives in Anne Arundel County. Her email is email@example.com.