Around the
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Communication in the Hospital
by David Chapple
Last month, I woke up at 12:30 a.m. with severe abdominal pains. I told my roommate Mike that I needed to go to the emergency room. When we got there, I was almost immediately put on a gurney and started with an I.V. I didn’t have access to my ECO communication device. If I did have my ECO, I wouldn’t have been able to bring it with me anyway because of the x-rays and ultrasounds that I received. Six hours later, I was diagnosed with Pancreatitis.
Not having my ECO in the emergency room wasn’t a huge deal because Mike was with me. After twenty years of living together, I can communicate with him without a device. So, I was able to explain what was happening with my body and ask the doctor questions with the help from Mike. However, the treatment for Pancreatitis is to receive intravenous fluids during a three to four day stay in the hospital. I have not stayed in the hospital overnight for fifteen years and my mom usually stayed with me day and night. Well, if you follow this column, you would know my mom became disabled and she cannot help me anymore. Also, Mike couldn’t stay because he had work and other responsibilities. So, I had to get through this myself. With the help from my ECO, my hospital stay was almost flawless.
I wasn’t very surprised that none of the nurses and doctors had ever seen an AAC system. They had a lot of questions. Sometimes I felt like they were more interested in my ECO rather than my health. When Mike and I got to my hospital room, we were bombarded with questions. These questions were not only about my personal care, but also about my ECO. It was a little overwhelming because I was in a lot of pain and I didn’t feel like giving a lecture about how to use the ECO. I know that seems sarcastic since the nurses needed to know everything, but that was my mind at the time. Once I had a little rest and been given something for the pain, I realized I needed to make people understand me so they could give me the best care.
I access my ECO via the Internal Tracker with a silver dot stuck to my glasses. Mike was able to position the ECO on the tray table so I could communicate in bed. Like I said, Mike couldn’t stay with me, so it was important for me to be able to tell the hospital staff if I have pain or needed to go to the bathroom. To make things even easier for me, a person (they were referred to as “sitters”) was assigned to stay by my side all of the time. Since I couldn’t hit the call button, having somebody with me made sense and made me feel at ease. Also, the companionship was nice.
For the most part, the hospital staff treated me with respect and dignity. Everybody that was involved with me wanted to make me as comfortable as possible. The majority of people realized right away that I was an intelligent adult. They were comfortable while talking to me and tending to my needs because I was able to give them instructions. However, like how it is always turns out, there are exceptions.
The first inappropriate situation was on the Sunday when the regular doctor was off and the intern was on duty. Now, I don’t know if this factored into the intern’s inappropriateness but she was from India. Fortunately, Mike was with me. When she checked up on me, she wouldn’t talk to me. She was telling Mike my test results and Mike kept telling her to talk me. She thought I had the intelligence of a seven year old and nothing Mike or I said could change her mind. A few days after I was released from the hospital, the main doctor’s office called to see how I was doing and to ask how I liked the doctor’s treatment. I told the truth. The doctor treated me great but the intern thought I was a seven year old. Of course I’m not going to know if the intern will be corrected but at least I said something.
On the following Tuesday, I had a second encounter with an ignorant student nurses. Ironically, the student assigned to me wasn’t the problem, it was the instructor. Part of their assignment was to get a complete medical history. So, the student asked questions that required complex answers. He was very patient and treated me like a competent adult. However, when it was time for the physical examination, the student was a little confused (I wasn’t angry with him) and needed guidance from the instructor. The very second the instructor came into my room she started with the “baby talk.” She laid it on thick. Mike came in about half way through all this and he just rolled his eyes. To put a good ending to this story, Mike asked the student if he noticed how I was being treated by his instructor, and he said he did and he thought it was wrong.
Hospital stays are never pleasant, regardless if you are a person with a disability or not. Things can get even more unpleasant when you can’t communicate your needs. Thankfully, I was able to have my ECO in front of me most of the time to prevent total communication breakdowns. However, as you read, we as users of AAC have to do more work to educate people in the medical profession that we are aware of our bodies and surroundings. If you would like to share a story of a hospital stay, good or bad, please contact me at AACConsumerNet@aacinstitute.org.
Your feedback is always valued. AACConsumerNet@aacinstitute.org.
