I’ve mentioned before that I follow a lot of medical blogs, more than a few of which are written by folks who work in the ED (Emergency Department -- not Emergency Room, thank you very much). After reading hundreds of tales in which doctors and nurses complain about the problematic patients they’ve encountered over the years, I’ve decided that the blogosphere is long overdue for stories about ED nightmares told from the patients’ point of view.
This is one of those stories.
I was a mess, physically, emotionally, mentally.
A month before, I’d started taking an anti-seizure medication with the hope that it would be the one that finally gave me some relief from the unrelenting central pain I’d endured for the last 25 years . The experiment was a disaster. Not only did the drug do nothing to quiet the pain, I suffered almost every severe side effect possible: nausea and loss of appetite, problems with short-term memory and concentration, insomnia, depression, dramatic weight loss, anxiety, exhaustion, tinnitus, and problems with my vision. I couldn’t eat, sleep, focus, or stop crying, nor could I get a single moment’s relief from the lancinating and electrical pain tearing at my left shoulder and right leg.
I took the medication for 21 days in the hope that my body would adjust and the miserable side-effects would diminish, but that didn’t happen. Magnified through the twin lenses of total exhaustion and unbearable pain, the symptoms actually got worse with each passing day.
When I couldn’t take a minute more, I called my pain clinic for help. My doctor was out, so I ended up talking to a resident who didn’t know me. I patiently explained that I’d been working with Dr. X to find a protocol that managed my central pain, why I had taken myself off of the latest med, and asked if they could see me sooner than my next scheduled appointment (still two long weeks away) or prescribe something to help me cope with the pain until then. The resident refused to do either, telling me that they “had to find the source of my pain before they could treat it.” My response -- that the reason I was in pain was because a large tumor had been cut out of my central nervous system and took a significant chunk of my spinal cord along with it -- failed to impress him, and he continued to refuse to help. When I tearfully asked how I was supposed to make it until my appointment, I was told to go to my local ED if my pain got “really bad.” And then he hung up on me.
As you might imagine, this did little to help alleviate my depression.
Four days later, I was still crying my eyes out and still in agony. I’d not left the master suite in our condo for close to a month, had no pain meds on hand, and saw very little hope for making it another ten days until my appointment with the pain clinic. After listening to an impassioned plea from the HipHubby to seek some help, I reluctantly agreed to do as the pain clinic instructed and go to the emergency department at Georgetown Hospital. Great idea in theory but a nightmare in real life.
The HipHubby and I arrived at the ED at 6:30 pm, and sat in the waiting room for the next four hours. When I finally got called back at 10:30 pm, the resident on duty that night all but ignored my explanation that I was there because I felt I was losing my battles against chronic pain and depression and hoped to get enough pain relief to get a few hours sleep and talk to a psych resident about starting antidepressants.
Instead, he became fixated on the fact that I was running a low-grade fever, and decided that tracking down and treating the cause of it was more important than dealing with my primary complaints. Telling this resident that my general practitioner had already run a full battery of diagnostic tests during the last month that ruled out the usual types of infections -- urinary and lung -- didn’t dissuade him of his resolve. As soon as his order to start an IV was completed, off I went, without the benefit of any pain medication, to have chest x-rays taken and urine samples collected. He even ordered blood cultures, in addition to the standard diagnostic tests like a complete blood count (CBC), to rule out sepsis. Only after another four hours had passed and the tests came back negative did he finally get around to giving me some Demerol for the pain and request a consult from the psych department.
It was 3 am -- eight and a half hours after I arrived in the ED -- before the third year resident from the psych department appeared at my bedside. I shared with her my terrible experience with the most recent pain drug, but let her know there was more than that fueling my depression. Dr. X, I told her, had promised me that he had “lots” of things to try that could help with my pain, but I was still without any relief after seeing him at the pain clinic for more than a year. I made certain she understood that Dr. X was not the first to fail to deliver on his promises -- he was just the most recent. And I confided in her that I felt adrift and alone, which was made all the worse when the pain clinic doctor whom I’d begged for help earlier today refused. I was emotionally exhausted because doctors would give me their word that they’d help me, and then renege on their promises.
The psych resident listened with interest and, when I’d finished, assured me with a warm smile and the “I care about you, really I do” pat on the hand that there’d be no problem getting me started on some anti-depressants before I left. But before she could write that prescription, I would need to submit to a complete psychiatric evaluation. I agreed, and with the Demerol finally easing some of the physical pain away, felt for the first time in weeks that I might be okay after all.
The psych exam took almost two full hours to complete. During that time, she explored my medical, social, and family histories. She assessed my cognitive functions and perceptions. And she evaluated my ability to care for myself and navigate the ins and outs of daily life, which included interviewing the HipHubby about my daily routines.
But the majority of the resident’s inquiries focused on the coping mechanisms I use and my ability to “appropriately” express my emotions. The latter is always tricky terrain to navigate because it’s so subjective -- doctors and I have been known to have very different opinions about what constitutes a suitable reaction to certain situations. For example, I think it’s perfectly natural to respond to the suggestion that I pursue in-patient psychiatric care with a sharp, succinct, and immediate “Fuck no!” Doctors, however, seem to disagree, and have even made a permanent note in my chart about how strongly they disapprove of that reaction.
Fortunately, there were no such differences of opinion that night, and shortly after 5 am the psych resident announced she was going to call her attending to ask about which antidepressant she should prescribe. It felt as though my release from the emotional prison in which I was being held was imminent.
It didn’t happen. It took the attending psychiatrist less than two minutes to decide that prescribing antidepressants and referring me for outpatient care would be inappropriate. If I wished, he said, he would admit me to their psych unit, but otherwise they would do nothing for me.
I was devastated that the same problem that had brought me to seek help that night had just happened again -- a doctor had promised to help me, and then failed to deliver on that promise. The psych resident wouldn’t acknowledge that she’d just become she vowed to help me fix, and refused to call her attending back to appeal his decision. She simply said she’d done all she could do, and walked away.
After almost twelve long hours in the ED, I’d had enough. I took out my IV and, without waiting to see the ED resident who‘d taken charge on my care, we left. No one seemed to notice -- we never got a second glance from any of the ED staff as I rolled out the door, nor did the hospital attempt any follow-up to my visit. It should go without saying that my experiences that night made me more than a little reluctant to ever set foot in an emergency department again.