Being Difficult for the Patient

“Help me! Don’t leave me!” These were the last words my mother said to me before she lost consciousness. Words that a son never wants to hear. Words that I thought would be her last. Only three days earlier, she had felt a tickle in her throat, just a run-of-the-mill cold. In a matter of days, this sore throat had bloomed into life-threatening epiglottitis, landing her in the intensive care unit. As she sat in the hospital bed, her face and neck were swollen stiff and her raspy voice was hardly audible. She leaned forward with her hands grasping her knees, struggling to pull air into her lungs. As a medical student, I recognized this posture as the classic “tripoding” from textbooks. I also remembered that only children were supposed to develop epiglottitis. My mother had obviously forgotten to read the textbook before getting sick. My father and I waited at her bedside as she floated in and out of consciousness. We simply tried to stay out of the way as countless medical staff scurried in and out of the room, waving their hands like magicians, making needles disappear under her skin and miles of tubing appear out of thin air. When they had finished, she was firmly tethered to several humming and beeping machines, and her hands were tied to the bedrails. Knowing less, I might have thought her a victim of torture, not infection. In the midst of this performance, the physician pulled my father and me out of the room. She spoke directly in a stern, unwavering tone. “Mr. Sisk, your wife is in a bad way. She has epiglottitis, an infection of the epiglottis. We need to put a tube in her airway so she can breathe. If we don’t do it now, her throat could close off and she could die.” Informed consent was a knee jerk. My father automatically agreed to the procedure. Once we were alone, he turned to me and asked, “Can you explain to me what the hell she just said?” Before they intubated and sedated her, we said our last goodbyes. Despite her clouded mind, she could sense that something was wrong. After a last kiss and a pat on the hand, I turned my back and walked out of the room, feeling the lash of my mother’s pleas for help. I was a medical student, I was a son, I was there, but I could do nothing to help. I wanted to be like the doctors on television, snap my fingers and fix everything. I wanted to be a superhero, but I was nothing but another worried family member in that house of healing and dying. Regardless of my intentions and desires, the only thing I could do was swiftly walk out of the room, racing my tears into the hallway. Just moments later, my mother was unconscious and a machine was breathing for her. Her condition remained stubbornly stable over the coming weeks, wavering between worse and better, but never progressing steadily toward improvement. As we waited for her to heal, minutes and hours seemed to blend together. A day could pass in a blink, but five minutes might last an eternity. Our frustrations grew as we waited - directed at doctors, nurses, each other, the monotonous selection of cafeteria food, the bad weather. These frustrations synergized with my anxiety, leading me to question every clinical decision. During visiting hours, I would check ventilator settings, IV infusion rates, urine output. I would pester the nurses for the latest vital signs and labs. I would stop physicians in the hallway, questioning treatments, asking for contingency plans to address every worst-case-scenario. I used my computer to continually scour the internet for information on medications and prognosis. All the while, I would translate the medical lingo to my family, always giving more information than they needed or wanted. However, knowing this information gave me some sense of control. It was all that I could do for my family. It was all that I could do for myself. Unfortunately, my mother’s illness outlasted my vacation days. So while she remained in the hospital, unconscious and unable to breathe, I had to drag myself back to medical school. Distance, however, was no deterrent to an anxious son. Even though I had left town, I still obstinately called the hospital every morning to ask for updated lab values and plans of care. The nurses bore the brunt of my curiosity, eventually recognizing me by my voice. I could almost hear them cringe when they picked up the phone. Slowly, the news began to improve: Her urine output has picked up; The infection has cleared from her blood; We have weaned her off the ventilator. After a month of lying unconscious in her hospital bed, she had finally taken a breath without the help of a machine. The long road leading back to her paused life was slowly being paved. The nurses must have loved the silence the morning after she went home - the first morning that I did not call the hospital. While my mother moved back home and slowly returned to normal, I fully immersed myself in learning clinical medicine. Memories had been packed away and my life moved back into a hospital, but this time wearing a white coat. It was much easier to learn about disease and illness when the patients were strangers. While I was rotating with a pediatrics team, a young boy was admitted to our hospital for treatment of an infection in his neck. We had tried multiple antibiotics, but his infection would not improve. Our next plan was to try a stronger antibiotic, moving down the routine treatment algorithm. So we entered the patient’s room to discuss the plan, our team of white coats standing like a parade of generals, showcasing our solidarity against infection. We calmly assured the father that his son would soon improve, but the father was neither intimidated nor impressed by our display. “How do you know that this is really an infection?” the father asked. “Well, based on the imaging and your son’s presentation, that is the most likely diagnosis,” responded the attending physician, as we all nodded in agreement behind him. “Then why haven’t medications worked yet?” “We just haven’t chosen the right antibiotic yet. You see, some microbes develop resistance to…” “I don’t care about microbe resistance. If this is an infection, you should have been able to cure it by now. How do you know this isn’t something else? What if this is cancer? How am I supposed to believe that you really know what’s going on here?” “Sir, we are doing everything we can for your son. These things just take time.” “Well, shouldn’t he have another ultrasound? Aren’t there any other tests that you can run to make sure this is an infection?” As my attending tried to answer his questions, our white-coated army quietly retreated into the hallway. This boy’s father quickly developed a reputation in the hospital that spread through whispers and raised eyebrows. He was the last person anyone wanted to see on morning rounds or wandering through the hallway. His son’s hospital room was avoided as if Infection Control had invoked isolation precautions. Later that week, we received the results of the patient’s ultrasound. Intending to update the family, we walked toward the patient’s room with tentative steps, anticipating another confrontation. But when we entered the room, the father had tears falling from his eyes as he watched over his sleeping son. Looking into the father’s face, I could no longer see the monster that my imagination had created. Instead, I saw his worry and fear at the thought of losing a child, his attempting to protect his son from something well beyond his power, his grasping for some sense of control in an untenable situation, his trying to be the best advocate for a desperate and frightened young boy. Rather than being difficult to spite the physicians, I saw him being difficult for the patient. It was all he could do for his family. It was all he could do for himself. When I looked into his bloodshot eyes, I saw my own reflection.