For patients and families, remembering hospital experiences can be like remembering relationships —we recall the good and forget the awful. If the food was surprisingly good and the nursing staff was especially nice then it was a good experience; the bad is forgiven and forgotten or not acknowledged at all. Our experience surveys always arrived while I was in the throes of managing my mother’s illnesses and recoveries at home: I didn’t have time to do them and mostly forgot the details anyway. I had bigger fish to fry. So when I see a billboard declaring that a hospital is #1 in patient satisfaction, I have to wonder.
I’m emerging from six years of caring for my mother who was frightened into quadruple bypass surgery at age 82 despite the fact that her Parkinson’s disease was advanced. In addition to infection that required readmission, the surgery and recovery accelerated her Parkinson’s progression. Given encouragement and time to talk with her far-flung children before agreeing to immediate surgery, she may have thought about how she preferred to live out the rest of her life and decide against it. But she didn’t and she extended her life eight years, uprooting me from my home 1,000 miles away and challenging me to endlessly figure out, mostly on my own, "what do I do now”? I’ve experienced the continuum of care all the way to more than a year of corporate hospice care—I don’t recommend it—and getting zero information about alternatives to nursing home placement. My mother died in August, incapacitated and demented.
I don’t know what I don’t know so I depend on the experts to create processes and materials to help me make good decisions and to maneuver this often incredibly frustrating, difficult and potentially dangerous system.
My mother couldn’t function without her Parkinson’s meds and, until I wised up, they did not follow her from hospital to rehab. Early on, no one ever told me that there would be a medication gap so it became my job to remember to provide them. At discharge, everyone is given the same instructions regardless of our ability to retain information or foresight to take notes. For some, it takes courage to question or ask the discharge planner to slow down and clarify. Others are functionally illiterate. There’s an awful lot to organize. And who really has time or the will to read brochures when caregiving demands consume us? Not me.
Then there’s the home medical equipment. The guy who drives the delivery truck quickly explains how to operate the equipment. He’s always in a big hurry and doesn’t have printed material. Once, an oxygen concentrator was delivered and I was not instructed to fill it with distilled, not tap water or clean the filter. Filter? The alarm sounded the first night, I didn’t know why. I could go on.
I should know better. That I do not really troubles me. If I were an 80 year-old tending an antibiotic infusion pump at home, I don’t know what I’d do.
Maybe some facilities consider discharge planning and home care to be part of the patient experience that’s tracked and enhanced. That’s not my experience but I surely wish it were.
Suzanne Steidl is the founder of Your Daughter’s In Town: Health Advocacy for Elders. She is an advisory board member of the Healthcare Technology Safety Institute (HTSI) of the Association for the Advancement of Medical Instrumentation (AAMI) and is working to simplify DME Instructions for Use and streamline hospital to home processes. She is a member of The Beryl Institute.