I have volunteered in almost a dozen hospitals and clinics on both coasts, worked thousands of hours in the ER, and I’ve been exposed to the hospital setting for just over a decade. But January 24th 2014 was the first time I was there on the other side of healthcare.
I was out to dinner with my girlfriend of over seven years, Amanda, and a med school friend of ours at a little restaurant around the corner from our apartment in Philly. While we were discussing the motivation and the merits of entering the field of dermatology, Amanda turned to me and calmly said that her face was tingling, pointing to her right cheek. Although Amanda has a long history of migraines this was an unusual presentation. As she was describing the sensation the right side of her mouth was drooping in a manner that I will never forget. Her eyebrows curled up towards each other as if to do the expressing of the fear that her brain and mouth couldn’t do for her–something’s wrong and I don’t know what it is. The look cannot be replicated without actually having facial paralysis, and it is the physical manifestation of a neurological haywire. I tried to remember my EMT training and go through the quick physical exam of a possible stroke patient, but we were in a busy restaurant and I could only ask what I believed to be the most obvious questions that came to mind. After about 15 seconds Amanda’s facial droop subsided and she reported her tingling was gone. Luckily we had already paid the check and we were on our way out after bundling up.
As we stepped outside into the 10 degree chill, we knew we were about the same distance away from two different ERs, and actually had the opportunity to choose. Amanda then thought that she should contact her insurance provider to see which hospital would be most appropriate. The fact that this even enters someone’s thought process during a possible emergency is a sad testament to how ingrained debt and healthcare pervade the American public’s consciousness. Amanda instead decided to call her mom, a nurse at one of the hospitals, and she said to just walk to the closest one, which we did.
Upon registering, Amanda and I sat in the clean, quiet, waiting room for a short while until Amanda’s name was called in for triage. Even though I know that patients that exaggerate their symptoms tend to get seen by the doctor sooner, I was hesitant to advise Amanda to embellish hers, because I somehow felt like this is insider knowledge and “tampering” with the doctor-patient relationship. If Amanda didn’t currently have dizziness or tingling I didn’t want her to lead the doctors on a breadcrumb trail of false symptoms so that she can be seen before other patients. She said that she felt like she may have had a stroke, an honest and serious enough problem that would garner immediate attention. After being sent back to the waiting room again, Amanda was called into a “multi-patient room” which I was not allowed access to. Sitting in the waiting room with a loved one not 100 feet away behind giant doors and a giant security guard and having no information as to when I’ll be able to see her or ask her how she’s feeling was absolute torture.
Having limited knowledge on what the possible causes for stroke-like symptoms are, the worst case scenario always runs through your mind. Trying to keep composure in front of Amanda and even claiming that it’s, “surely not that big a deal if it came and went so quickly”, it is much harder to be confident in what modest clinical skills you have when you are isolated. Having waited over an hour with no news on what the upcoming steps are regarding treatment, the only thing between me and insanity is a shitty TNT or TBS or FX movie with the sound off in the waiting room. I finally received a text from Amanda (I had been texting her asking for updates), telling me to go home and feed the cat because she saw the Resident who would be getting the Attending Physician and that it could be “a while”. I took the opportunity to get some fresh air and walk home (we only live a few blocks away) to gather some things that Amanda might want for a long night…and to feed the cat.
Walking back alone around 11pm on the icy streets, a light snowfall began and somehow made Amanda’s diagnosis even more dire in my mind and me feel more isolated and desperate for answers. How could a healthy 28-year-old who doesn’t have any risk factors suddenly develop partial paralysis out of the blue? Was it a brain tumor, a TIA, does something even more serious exist that I just haven’t learned about yet? Should we have rushed right to the ER, were precious moments wasted when we were weighing the pros and cons of our next move? My thoughts turned toward taking care of her if need be. Would this be a longterm thing? If I had to leave school is it even possible to just take a semester off? Would I have to decide to leave immediately or do I get some time, and who do I contact about this anyway? Perhaps my selfishness was getting the best of me, but every scenario concocted pushed me deeper and deeper into this hole of responsibility that I didn’t know how to get a grasp of. I reached the apartment, gathered my backpack, threw in our phone chargers, brought a book to study and the iPad for Amanda to help pass time. It was 11:15 and I received a text from Amanda saying I was allowed to join her in her room in the ER. I flung my backpack over my shoulder and headed out again, this time a thin layer of snow covered the ice on the cobblestones allowing me to step right on them for traction rather than daintily avoiding their glassy palms. Ah shit, I forgot to feed the cat.
When I met up with Amanda, she was alone in a corner room of a quiet ER, blood already drawn and an empty urine cup beside her gurney. I gave her a hug as she caught me up on this situation. A resident, followed by the Chief Resident then the Attending Physician had been in to see her and asked her many of the same questions that the nurse, registration and triage had asked her earlier. The next step was for Amanda to get a CT scan of her brain. We chatted away as midnight came and went. The worst part of waiting in the exam room is that you have no idea what is going on around you. As far as we knew, ER techs would be coming to take Amanda to get a CT, but we weren’t given a specific time. Working in an ER, I have dealt with patients that want to know what’s going on, and usually nurses and other staff can really only say just sit tight, we haven’t forgotten about you. Although I knew what the answer would be before the nurse told us CT will come by “soon”, the ambiguity of the answer almost made me feel like these people don’t know what they’re doing. The fact that this even crossed my mind made wonder what the lay person thinks, since I know that the staff is often over-worked and usually is buzzing around from patient to patient, but I still had the audacity to wonder if the ER techs were standing around making small talk. This was my foray into the other side and it didn’t sit well.
Techs came and took Amanda to CT in a wheelchair. She was back within 15 minutes and more waiting ensued. Still with no answers in sight we were told after about an hour that the neurologist would be coming to speak with us at some point to discuss the CT results. Is this good or bad, I wondered? I was trying to piece together the clues that would lead me to how serious the doctors thought Amanda’s condition was. Well, she was not under close supervision–that’s good. She also wasn’t hooked up to any monitor for vital signs–I guess that’s good. She didn’t receive any other meds besides Tylenol–that’s also good. At the same time, is this just standard practice in a neglectful, busy ER where patients are always forgotten and maybe even sometimes left for dead? Also, why would a neurologist need to speak to a patient with a completely normal CT scan, couldn’t the ER doctor just tell us the news? I feared that I knew too much in making me wary of the situation, but not enough to recognize that everything was fine and the hospital was just following it’s standard procedures. Does a family that has no medical background and no idea what could be going on take solace in that their outcome is strictly in other’s hands, or does that make it even more nerve-wracking?
What was taking the neurologist so long? Were they verifying the CT with other expert neurologists in the area giving their thoughts on a rare disease, were they debating how best to deliver terrible news? The longer we waited and the more in the dark we were, the worse it seemed. At 1:30am the neurologist came in to speak with us about what they believed happened–which was nothing. The neurologist was 27 years-old, smooth and confident. I’d like to be like that one day, well except for the 27 part, which I can never be again, but I rather like the smooth and confident part. Amanda had what the neurologist believed to be a “complicated migraine”. Nothing serious it seemed, but Amanda would need a follow up appointment. It’s apparently one of those things that can simply happen to someone that has migraines for no explicable reason, and this could be the only incident that ever occurs in Amanda’s entire life. The doctor performed a neurologic exam, asked if we had any questions, then said she would be back with the discharge papers. About an hour later a different doctor came in with the discharge papers for Amanda to sign. While we were waiting we had thought of some questions to ask about her condition, but when it was a different physician that had entered the room we thought that was a little strange. Amanda asked some questions and the resident said he didn’t know how to answer them because he wasn’t a neurologist and that Amanda would have to call them on Monday. But, but, but the neurologist said she’d be back “shortly”, and not only was it not her that came back, it certainly wasn’t “shortly”. I am truly grateful for the attention and care Amanda received and I realize that in these situations, nothing is ever enough. I get it, 30 years ago if you said you could walk up to a hospital, people could take images of your brain, a doctor could look at it and diagnose you, and you’d be out of there in a few hours, you would be incredulous. This is not lost on us.
As far as I remember, I don’t recall any loved ones having cancer, a dramatic disease, or even getting a phone call about a serious traumatic incident. I am very lucky. I don’t know what it’s like to have someone I love seriously ill, let alone lose someone so close. Every now and then while working in the ER I would come across a patient that would remind me of someone dear to me. A 60-year-old man that has no history of heart problems that suddenly has a heart attack and dies. I think about my father and what it would be like to lose him. Empathy is funny in that it can make you feel profoundly, but that emotion is not genuine. I can think about how sad it would be to lose Amanda, but until I came face to face with that prospect there’s no way to make it real. Every now and then I think of philosopher Thomas Nagel’s paper, “What is it Like to Be a Bat?”, that I read in an undergrad class. The gist is that a human being can never feel what it is like to be a bat, they can only feel like what a human feels like it is to be a bat. This is an important distinction. Prior to getting accepted to medical school I would frequently fantasize about what it would be like to open my mailbox and see a large envelope. Would I jump up and down and shout like a nut, or would I play coy and act like this is to be expected and it’s just a bit of good news? Even when I look back on how happy an event it was, I can never replicate that exact feeling–I can only recall what that feeling felt like–which is not nearly the same thing.
In medical school we are taught and trained to be empathetic and exhibit compassion towards our patients and those that we are providing care for. We spend time in the classroom and watching videos online and writing short essays that exhibit what we’ve learned about how to better understand patients. I have spent countless hours amongst patients in various capacities, and I always thought that I was empathetic towards them, when really I was only sympathetic. I don’t believe it is possible to train someone in empathy. They can learn the tools to becoming empathetic, but without experience we are just doing the best we can. We shadow doctors and even see patients as first year students but unless we have experienced what the patient has experienced we don’t know what it really feels like to be in their situation. Does empathy from a provider really affect patient outcomes, and how would that even be measured? The staff at the hospital Amanda and I went to were courteous, professional, and performed their jobs well. But something in healthcare is missing, and it’s like being a bat. Is spending all the time and resources on trying to get students to become caring individuals actually making better doctors, or better actors? Being on the receiving end of healthcare it is easy to see which providers are going through the motions and which ones are feeling what you’re feeling. Although Amanda and I didn’t admit to each other at the time, while silence filled the hospital exam room between ominous beeps sounding from foreign machinery in the early hours of Saturday morning, we were both terrified. I could describe the feeling to you in as much detail imaginable but you would never know what it was like in that room unless you experienced something similar yourself. And for me, I could try to remember the emotions I felt in the pit of my stomach that night while flipping through a textbook, reading the same sentence over and over again, as I sat next to an energy-depleted best friend–but it will never be as frightening as it was in that moment.
We shuffled home at 3am, hours after we embarked and thankful that nothing serious came about this trip to the ER. Amanda felt fine now, just tired. The heat was left off in the apartment but it was still much warmer than outside. The cat was fed and all was right in the world.