Posted on July 16th, 2012 by Admin
Editor's Note: Nora M. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
What could I offer to benefit the healthcare community via social media? How about an impassioned point of view built from painful experiences?
You might think healthcare has to do with physical bodies—fixing breaks, closing wounds, treating disease, administering treatments, strengthening weaknesses.
In my view, the health in healthcare refers to the whole experience of a whole person, not just a body, and the care in healthcare refers to how, and whether, healthcare providers interact with the whole person, or just the body.
One thing that makes each of us different from all others is the way we use language to describe, evaluate, remember, feel, and find meaning in our physical and social experiences. Language can elevate and distinguish us, and it can comfort and reassure us.
Or it can devastate and dehumanize us.
Here’s just one experience illustrating my point. Late one Friday night in 2002, I stood beside my eldest sister as she waited on a gurney in an emergency room in St. Petersburg, Florida. Earlier that day she had finally undergone the endoscopy that would reveal the cause of her inability to swallow food.
For months, her doctor had answered her repeated requests for help by telling her to stop being hysterical and just eat a peanut butter sandwich. Down 30 pounds from a starting weight of 120, and terrified, she called on me to rescue her from this health “care” nightmare. She felt humiliated and desperate, and the one person who should have cared enough to actually investigate her problem, her doctor, instead acted as if she were simply pathetic and willful.
On the web, I found a new doctor in her area with positive patient reviews. After one look, he ordered a swallowing test. I sat in the darkened fluoroscopy room as the technicians watched her ingest various radio-opaque items. When a small pill stopped halfway down her esophagus, they were surprised and sympathetic. They said something was definitely not right, and scheduled an endoscopy. Out in the waiting room, she sat down and cried, not because she now knew she was ill, but because someone finally believed her—she wasn’t just being foolish and hysterical.
Sadly, the endoscopy revealed a tumor in her esophagus. The gastroenterologist inserted a PEG tube for feeding her, and scheduled an MRI to evaluate the tumor for staging. Later that night, a sudden severe pain near the stomach tube brought us back to the ER. The doctor identified the pain as innocuous trapped air from the PEG insertion, but since we were already in the hospital, he suggested she have the MRI then, rather than waiting. After running the test, the MRI technician assured us that everything looked fine. (Why would he say that when it was not his place, and he was obviously not even close to right? I only realized years later that he probably meant that the images were readable and the procedure wouldn’t need to be repeated.)
While we waited to be released, now four hours into the visit, she was clearly running out of steam. I finally snagged a nurse to see if we could leave. She went to see what was up. I’ll never forget what she said when she returned:
So, you’re the stage four esophageal cancer with metastasis to liver and lung, right? Yeah, you can go home now.
I will also never forget the look in my sister’s eyes as the nurse’s careless words sank in. I want to find ways to make sure that no one ever again has to endure health “care” from such cavalier and unthinking people as that callous doctor or that flippant ER nurse. I want to help medical and nursing students, doctors, technicians and hospital administrators realize that every word counts, to understand that their sharp or careless words get buried in the hearts of patients and their families.
Examples—I have a bucket full. I want to use social media to share my stories about the double-edged sword that is language, and the critical role it plays in patient-centered care.
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