The Patient Perspective (aka, Who Just Knocked the Floor Out from Under My Feet?)
By Teri Thomas
On the plane back from a short vacation in the Caribbean, my throat and head began to ache. It worsened until I suspected strep throat.
After waiting 30 minutes (in a room with other ill people) at the nearest urgent care, I was curtly informed that my insurance no longer covered my care there. Miserably, I drove to the next closest urgent care while I called my insurance company for guidance. They directed me to their web site and asked me for names of individual physicians. However, I just wanted the nearest place to get a strep test.
I pulled into the next urgent care lot and gave my insurance company their address. Not covered. Third choice was covered, so I waited in the queue and eventually was swabbed. After an hour or so, they informed me it was negative and sent me home with “Tylenol and rest.” I felt a little ashamed to have wasted their time and resolved to toughen up.
Two days later, my sore throat had worsened. I was spiking fevers over 102 and my headache became the worst in my life. My body ached and shook and the pain made light and normal sounds hard to tolerate. I held my head in my hands while my husband drove me to the ER.
The ER nurse gave me a medication. When I asked her what I it was, she said, “la-la.” I found it strange (I had no idea what la-la was), but since it hurt to talk, I let it be. Then the doctor came in and asked me what pain medication I was given. I was embarrassed — all I knew was that the nurse called it la-la. Strangely, he seemed OK with that and he didn’t choose to clarify or comment (it was Dilaudid). They drew blood and did a spinal tap, suspecting meningitis. Things began to move around me, giving me the feeling of being an object instead of a person.
They admitted me to the hospital, bundling me in blankets for chills and medicating the pain, while trying to figure out what my illness was. Each doctor gave me a different diagnosis, often confidently. The epidemiologist said, “It’s dengue.” I had chest x-rays and was told pneumonia. The next doctor said I did not have pneumonia.
My husband and I wanted the doctors to talk with each other. It didn’t appear that they did, as my husband or I had to inform each doctor about what the others had said. The neurologist asked me questions, but never shared his conclusions. I had to painfully recount the course of my illness to him and the others.
Respiratory therapy was a lifeline because they stayed in the room enough for me to be sure I knew who they were. A curious thing to me was the feeling that I existed “in part” to the various specialists. I was a CNS, or pair of lungs, or a Caribbean vacation.
Some of the doctors seemed to go as fast as they could in their questions. I felt like a speed bump in their race to their next (maybe more important?) patient. As a patient taking pain medication, it was difficult for me to keep up with them, and since I didn’t have time to prepare for a new visitor (they were a surprise), I gave regretfully jumbled and incomplete information.
After explaining my history and situation for the third time, I hand wrote the timing, sequence of events, and main symptoms on a piece of paper for new physicians or providers to read. It seemed strange that they didn’t seem to want to read it.
It meant a lot to have someone look me in the eyes.
My attending was a foreign-born hospitalist who directed his dialogue to my husband as if I weren’t there. Being a fairly assertive person, I asked him to please include me. With his mouth, he said, "What can I do for you?" yet his eyes and body language said, "You are wasting my time."
After being denied by nursing, I asked him for the results of my labs and he said he couldn’t do that. He then asked which ones specifically, and only then verbally answered for those specific tests I could think of the top of my head. A printout or online access would have been much better. Not getting information about my own body was incredibly frustrating. It felt disrespectful, as this was happening to ME.
There was a big sign directly in front of my bed that said, "Medications, always ask– explanation, dosage, side effects." Not once did a doctor or nurse ever offer side effects or dosage information. During times of decent pain control, I found the sign humorous.
In writing this, I struggled to find the best word to sum up how the admission felt. Words that come to mind include humiliating, confusing, and castrating (in the sense of taking away one’s strength). I was a strong, educated, independent woman, used to being on top of things (and directing others) with a solid understanding of healthcare, medical terminology, and hospital operations. Suddenly, I had no control over my schedule, no idea who or what was coming next, was highly vulnerable due to pain and pain medications, and I was afraid — something painful and strange was going on in my body.
My toilet was set with a plastic catcher to measure my urination, but it sat there overflowing because nobody emptied it. There was a white board in my room with some basic information (e.g. name of my nurse), but it was often incorrect. The pain meds made it hard to track what was going on, yet I seemed to be the owner of communicating my situation to all of the changing players around me. I started taking my own notes in a notebook to ensure I was telling people the correct medications.
The alarms, blood pressure cuff squeezes, and noise outside my room meant I slept fitfully at best. When I did sleep, I had intense nightmares that caused me to wake in an utter panic. Maybe from my mystery illness, maybe from the medications. Either way, it was intense, and I was grabbing for any sense of control or understanding that I could.
I was reaching for blocks of reassurances (seeing my labs directly, seeing my problem list or diagnosis notes, being told what or who was coming up and when). Simply hearing my care team collaborate and come to me informed and with a unified hypothesis would have made an enormous difference.
Eventually my blood work showed I was stabilizing. The pain began to subside enough that I — knowing the risks of hospital-acquired infections — asked to go home and recover there. I was told a few weeks after discharge that two blood tests were negative for dengue fever, so I never did find out a definitive diagnosis. I got a copy of my H&P and discharge summary and found it humorous to see how little useful information was included, yet there were numerous references to how pleasant I was (surprising, as I was in terrible pain and struggling to be pleasant, but also not very relevant).
It certainly could have gone better, and I’m sure for some patients, it does. I can almost hear the comments, “My patients don’t want their lab information; it would just confuse them.” Fair enough. Each patient is different. However what they have in common is a desire to feel respected and listened to.
If folks are interested, I’m happy to post what happened after that—the experience with post-hospital care coordination, billing, how this relates to HCHAPS, as well as concrete suggestions and lessons learned. Do let me know. Having worked in healthcare for 25 years, this experience has energized me to continue to try to make things better.
Teri Thomas is vice president of Epic Systems of Verona, Wi.