“I want to go home,” she said. I stood at her bedside dressed in my contact isolation gown, holding her hand in mine. She lay there in the hospital bed, motionless. Her eyelids were closed, making non-purposeful fluttering motions. Her lips were dry and cracked, and there was stale saliva stuck to the surface of her teeth. At age 57, she had been bed-bound for the past 10 years, trapped in her body due to supranuclear palsy.
Her chart had her labeled as “nonverbal at baseline.” Every morning on rounds, the teaching service would enter her room to discuss her care. We would engage in conversation around her. We’d make our assessment, discuss what needed to be done, come to a conclusion, and exit the room. No one spoke to her. No one asked for her permission. No one explained the plan. The decisions were made and we were onto the next patient.
The first day I encountered her, I was at a loss. How do I gather information from a patient who isn’t able to communicate with me? I entered her room and surveyed the scene. I checked the monitors, the drips, and then I approached her. I stared at her lifeless figure, taking note of the significant atrophy and pressure ulcers that marked her body. Not knowing another way to proceed, I took her hand in mine and said, “Good morning. I’m the medical student assigned to assist with your care. How are you today?” To my surprise, I felt her hand tighten around mine. I wanted to make sure it wasn’t my imagination; I asked her to squeeze my hand again. She did. At that moment, I realized that not only could she hear me, but she could also understand me.
When I later shared my findings with my attending, he stopped me mid-sentence in disbelief. “This I have to see for myself,” he said. Sure enough, when we entered her room and he asked her to squeeze his hand, she did. He asked her to open her eyes and to open her mouth. With great effort, she managed to obey all of his commands. Gently, he patted the side of her face. When we walked out of her room, he looked at me and said, “This is a case you will never forget, and neither will I.”
Throughout her hospital stay, I started each morning the same way, but I began talking to her more. I would explain the results of her lab work and imaging studies, and how they helped guide our care. I told her about the changes we were making to her medications, and when other doctors would be coming to see her. I also told her when I would be starting the physical exam. I’d say, “I’m going to listen to your heart and lungs now. You’re going to feel my stethoscope against your chest. Try to take some deep breaths.” Each time, she would do something to let me know she understood. She would squeeze my hand, move her head, and occasionally even manage to smile. Sometimes she would mouth words, but couldn’t muster the strength to generate sound. I tried my best to decipher what she was trying to say, but I was never successful.
One morning, I happened to be in her room at the same time as her nurse. He was in the process of teaching his nursing student how to crush medications to administer them through her feeding tube. Having never seen it before, I stayed to learn how it was done. I also help them wash her, brush her teeth, and change her dressings. Before leaving, I noticed that her hands were cold. I found a blanket and placed it over her lap. Her nurse looked up at me and said “I’ve never seen a doctor place a blanket on a patient before. Don’t ever lose that.”
Within two weeks, her condition had improved such that she was stable for discharge. When I shared the news with her, her face tensed and tears began streaming down her face. Confused by her reaction, I explained she no longer required hospital admission because she was doing so well and could return to the assisted care facility. This only upset her more. Then, as clear as could be, she said, “I want to go home.”
On the first day of my rotation, I asked my attending physician if there was one piece of advice he wanted to give his students. He responded, “Listen to your patients.” I had heard this patient loud and clear. While there was little I could do to change the final outcome, I tried to convey her desire to go home. I shared her wishes with the physician, residents, her case manager, and social worker. Together, we contacted her family. Unfortunately, given the chronic and debilitating nature of her disease and her transient ability to communicate, nothing could be changed. Frankly, I’m not confident anyone believed me, either.
I left the hospital that day feeling defeated. My patient wanted to go home and I was unable to fulfill her request. Although I tried my hardest to advocate for her, the barriers were too great. I felt hopeless — and, in that moment, I realized how ironic my hopelessness was given how she must feel every day. It must be have been torturous to lie there immobile in that hospital bed, hearing others talk about her, making decisions for her, putting her through endless procedures without ever asking her what she wanted and not being able to speak.
I don’t know why or how she managed to speak to me, but I like to think it was because I spent the time with her when others did not. While I understand time is a limited resource that is hard to come by, please, take the time to spend with your patients. Please remember, regardless of the affliction, your patient is a person and deserves to be treated as such.
Jennifer is a fourth-year medical student at the Lake Erie College of Osteopathic Medicine. She is pursuing anesthesiology for residency.
