Until I received the phone call at home from the nurse that attended to me, I did not consider initiating a complaint about my patient care at the ER. I feel my experience with care providers was highly stressful, confusing, and ultimately unprofessional; certainly not what I would expect.
I went in to the ER complaining of fatigue, confusion, trembling, and headaches, but also nausea, and difficulty remembering details like what I ate for breakfast. I had some blurred vision as well. As a type 1 diabetic, I noticed a difference between these symptoms and low blood sugars. This was like another episode I had a week ago that lasted all day, and my blood sugars were fine then.
I am also diagnosed as bipolar and on medication. I have a history of anxiety, ADD, and I work in a highly stressful environment. I didn’t mention that I have a learning disability of sorts. There is a measurable difference between my cognitive processing and verbal acuity. Though my verbal scores are in the normal range, my processing is high, and this difference means that it is often a challenge to speak, or to get out words at the rate of my thinking. It takes a lot of effort to communicate verbally.
I understand that a type 1 diabetic condition puts me at risk for many complications, and with any perceived emergency I feel its good judgement to attend an ER. I have infrequent and challenging access to my GP, and my endocrinologist, which takes time – usually that I don’t have – to set up. I prioritize and trust in the response from an ER; especially when I am afraid for my life.
I manage my time in great detail through electronic scheduling. I record blood sugars, and all of my necessary business actions in the same database, which runs my life every day. After years of trying to accommodate medications, I have adapted to patterns and habits where I am seeing change for the better.
I try to minimize conflict or negative situations as they suck the life out of me. I would rather move forward from a situation and put it behind me than find myself ruminating for days. I simply cannot afford the time or impact emotionally. I have multiple projects at work that require my attention, and adding to my stress is not good.
It takes me time to communicate effectively, and I have to prepare for conversations with written outlines that allow me to focus. Otherwise, I prefer to communicate in writing, though this is a big commitment of energy and time.
My Experience at the ER
I was prepared for the waiting room, and, after triage, settled in with reasonable high spirits. I had brought information on my condition and medications. I had to mentally prepare as I have anxiety and ADD influences that can trigger negative reactions. I understand wait times.
I was taken into the treatment area and put in bay 17, and required to remove my clothing, which I folded and placed on a chair.
The ER nurse came in and asked about my condition. I did my best to answer, though I realized I had memory gaps and was confused and slow to respond. At some point in the next hour I experienced a low blood sugar, and was given some apple juice and I was reasonably comfortable. The doctor came in as well during this time and asked me again what brought me into the hospital. I noticed that I was adding more information about things like occasional abdominal pain, which were not part of my original complaint, but had presented by that time. I think if I was there longer I might have mentioned my broken signal light on my car.
Somewhere in the following hour, I was directed by the nurse to put my pants on, that they needed the room, and I was to take a chair in the hallway. I understand triage and priorities – not a problem – but I was hurried out of the room. At one point, I had my shirt on the bed as I dressed, and the nurse tossed it back on the chair it had come from, and continued to push at a pace I was not responding well to because of my condition. I felt I was not moving fast enough for staff.
I was pointed in the direction of a large chair placed in the hallway facing the work station. There was no place to put my clothes, so I hung onto them in my lap, half dressed in gown and pants. There was no call button for an attendant. For what may have been an hour, I sat in that chair with my clothes, unsure of what to do. I started to worry. The nurse in charge of my care had gone on break. I wasn’t given an update on the process, let alone some kind of encouragement, or empathy for sitting in what I came to realize was a busy hallway with patients, relatives, gurneys and food carts rolling by – haphazardly coming close to hitting me.
I admit at first I was indignant, however I also felt empathy, and even humour, finally settling on a kind of retreating fearfulness of ‘what if’s.’ What if they don’t remember I am here? I actually had that once before. What room am I assigned to now? What if my information gets lost? What if I need something, who do I ask? This last one affected me the most as I often have to overcome fear when interacting with the unknown, mustering up a lot of courage to initiate a conversation. I found myself stuck in a dimension of inertia – like moss – in my chair. I was at last seen by a blood nurse, and a couple of samples were taken. We had a joke about the hallway. She said it was the hospital’s new open concept. I laughed louder than I needed to.
After the blood nurse left, in my mind, I wanted out. I was telling myself I could just go. There weren’t that many people around now so it was time to make my break. I asked someone where I could “get dressed,” and I was pointed to a washroom. Seriously? It stank of urine. Wretched. I took off my gown and looked for somewhere to hang it, finally settling on a handrail. I considered tossing it on the floor in dramatic fashion but, well, no one was watching except me.
Fully dressed, determined, and not looking into anyone’s eyes, I walked out through several sets of doors into the cold, sunny day, bused it home, and sat on the couch overwhelmed by the day’s events. In my mind, they would call me if there was anything wrong with my blood tests. That had happened at least once, several years ago now. I debated contacting the hospital, and looked up the feedback information. I wasn’t going to complain, but everything was running though my head at once. I repeated few times to myself, “Is it me now, is it me later, or is it me not at all.” Back in the hallway there was a large poster about improvements to “the patient experience.” The doctor had been distant, emotionless, and the nurse was formidable. I can understand, really I can. But then I got the phone call.
It was the nurse. She asked me why I had left the ER. I tried to tell her but my words didn’t come out right. I was still processing. I stuttered something about my discomfort, stress, and fear, not really wanting to have the conversation, and trying to minimize conflict. But the voice wasn’t listening. I was told that taxpayers foot the bill for incomplete diagnoses and it was a waste. I asked about the diagnosis and follow up, and I was told there wouldn’t be any. They don’t give information over the phone. I tried to argue it had happened before, but I was cut off and denied. I was hijacked emotionally. Not only was I called at home to be lectured to, I couldn’t escape the emotional stress of the hallway, or the suffering from the medical condition that I would never know about. Anger ripped through me, and, as I pulled the phone away from my ear, I asserted I would be calling the administration to complain. I hung up. That’s it, I am sure they would label me difficult somewhere in my file.
I like patterns. They are dependable. Anything out of a routine for me is hard to accommodate, but I must maintain my flexibility for my own sake. I am self-aware. I eat the same foods more or less, at the same team each day of the week, and I do my laundry Sunday afternoons and I promise to call my mother Saturday mornings – in my mind at least I have security. I notice things that are different, like the day long trembling with the confusion, weakness, and headaches; and I worry. Today I noticed a more malevolent pattern: You can’t escape the power of large institutions. There’s not only the indignation, confusion and anxiety, and conflict you experience behind their doors, but they will also track you down and give you their two cents in your own living room. You can’t hide. Be afraid…be very afraid.