Hospitals are places where even the most astute medical professionals have to be constantly reminded that their patients are people whose lives have been uprooted. When you enter the gilded doors, passing the wings and elevators named after people who were surely rich and are certainly dead, you are presumed to check your life at the door. A hospital is very much like an airport or possibly a prison. You have no ownership of your own time, your own space, or your own body.
Lula was admitted to the hospital on Monday, a scheduled stay to perform an array of tests including a nerve conduction test (she failed), an EEG (abnormal but no sign of seizures), an eye exam (normal), and a muscle and nerve biopsy (results in a few weeks). From the outset mistake were made - small ones that did not affect treatment or diagnostics but very much affected the experience of our stay. A roaming assemblage of doctors of various residencies and specialties
wandered into her room uninvited and would bombard me with the same
questions again and again. Hours of nothing would end with 3 different departments showing up at the same time to examine her. Where was anesthesiology, who was asked several times to come by? They had the wrong ID number for her. There was no feeding pump ordered for her and they didn't have the right formula.
Sam stayed on Monday night and didn't really sleep at all. At
7:30am he went to the OR with Lula for the biopsy with no time to eat or
drink anything. After 5 minutes he could feel the blood draining from
his face and he had to lie down on a cot. It would have been prudent for the staff to make sure he had a break before surgery, but I don't think that's ever a consideration. Later in the day Lula's nurse drew 7.5mls of her dysmotility medication instead of 0.7 mls because of a clerical error. I caught that one. The doctors were suitably horrified at the error, but could not figure out how it happened. When they came in to apologize they had to also tell us that blood that was meant to be drawn in the OR hadn't been. Did we want to come back another time to do it? Um, NO. I wanted nothing more than to get it all over with.
I don't mean to belittle what doctors do. They can only contribute to the future of medicine by learning from the present, and they devote obscene amounts of their life towards furthering healthcare. But as good as they are at medicine they are absolute masters at wasting other people's time. They are chronically incapable of streamlining and coordinating with other doctors. And they seem unconcerned with how their poor timing and inefficiencies affect their patients. They are so focused on how medicine is affecting their patients health that they are oblivious to how their quality of life affects their health.
I propose that hospitals need to be run more like hotels. Every patient needs a concierge; someone whose sole job is to coordinate the patient's schedule, stagger the doctors exams, make sure all equipment etc is there in advance, and to make sure that caregivers have time to eat dinner or take a nap. Every doctor should have to sign in upon entry to the room with their name, specialty and direct phone number which the patient should be given at the end of their stay along with a list of support groups and online resources.
Lula has recovered so well from everything now that we are home. We are back to being people, not patients, and we took the day off from therapy and doctors, and tests. My sister and I took the kids to the Prospect Park Zoo, where we petted the Alpacas and ogled the Baboons. Caitlin wore Lula in a carrier and I put Roan on my shoulders to watch the Sea Lion show. It was the perfect antidote.
Thank you for sharing this Micaela. I'm sorry you had such a horrific experience but hearing accounts "from the other side" helps me keep things in perspective when I go to work. I've seen similar situations happen with my patients families. I'd love to share this with many of the nurses and doctors I work with.
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