The triage note read, “76-year-old male. Oxygen 76%. Short of breath. Wife COVID+ 2 weeks ago.” I put on my gown, mask, face shield, and gloves and walked into a room where the patient sat on the edge of his bed, bare chest heaving. He wore a blithe smile on his unmasked face. I glanced at the monitor. His oxygen had dropped to 74 percent. As we talked, I saw his COVID test results. “I think we should admit you to the hospital because your oxygen is dangerously low, and you tested positive for COVID,” I said. He replied cheerfully, “No thanks. That thing is a hoax.” I pushed on, telling him I was anxious about his oxygen level, “Would you want a breathing tube to help you breathe if you were to need it? Can I call your family and see what they think?” His face darkened. “Well, none of this is going to be a problem because I’m fine. You don’t need to call my wife; I’m not going to worry her when there’s no problem.” These patients sometimes got sick fast, and I didn’t want to leave this ambiguity to my overstretched hospital colleagues who were left with too many of these conversations in the middle of the night. I continued to push. “Well, let’s just say you were sick from something else, and your oxygen dropped really low, and you weren’t able to breathe on your own, then would you want us to use a tube to help you breathe?” “Then I’d want you to take me out back and shoot me!” he exclaimed. He ultimately agreed to stay in the hospital but made it clear he didn’t share my narrative about what was going on and that my concern was overblown. He was intubated that night. The patient and I couldn’t get our shared story straight. Emergency medicine requires the rapid-fire exchange of stories. Every medical student learns the story structure in their first year. “When did the symptom start? Where in your body? Does it radiate anywhere? What makes it better? What makes it worse? What does it feel like? How bad is it?” Family members play critical roles in storytelling, adding to, altering, and often telling an altogether different story from the patient. Yesterday, a patient told me he was “fine,” hadn’t fallen and wanted to go home. His wife told me he had fallen so hard that the toilet broke, and the drywall was smashed. Stethoscopes, white coats, medical equipment, and the tactile elements of the physical exam are tools on the one hand, but are also important symbols of the story of giving and receiving care. Grimaces, lung sounds, and the give of an abdomen allow the doctor some embodied understanding of the story. The doctor and patient must ultimately come to a shared understanding of the story for care to progress. Common genres are “You have cancer,” “You are sick and should stay in the hospital tonight, but you are probably not going to die from this” and “There’s nothing wrong that we can see with our eyes and lab tests and images, but I can feel that you are suffering and I’m sorry I don’t know why.” Once a general understanding has been reached between an emergency room doctor and patient, the next stages of storytelling can happen between the patient and their family: (“Well, the doctor doesn’t know what this is, but I’m safe to go home. Will you stay with me?”) or between the ER doctor and hospitalist or consultant (“59-year-old male with chest pain, ongoing despite nitro and morphine, ST depressions, troponin elevated, started heparin drip, would like to admit to cardiac telemetry unit”.) If there’s an agreement, the patient takes the next step. He leaves the ER to go home, a detox, psychiatric facility or homeless shelter or is admitted to the hospital. When we can’t come to an agreement, at least one person is left unhappy and unmoored. Nearly every one of these elements of storytelling has been lost in the pandemic emergency room. Now, I enter the room covered with a plasticky layer from head to toe. I communicate more frequently through iPads and phones. Family members are absent. I call them, and they tell me how angry they are to wait in the parking lot for so many hours. I feel pressed for time between all the gowning, gloving and extra phone calls. In addition to losing our ways of communicating, we are ourselves adrift within the stories. Neither doctors nor patients have been able to situate themselves solidly in the narrative arc of a pandemic that endlessly changes. Doctors went from heroes to money-mongers, entire treatment paradigms changed in quick succession, and we have wildly divergent stories about the very existence and effect of the COVID-19 virus. The contradictions in the stories of our shared roles and realities create some of the greatest pain points in working on the pandemic front lines. These are the complications that can arise in the easiest cases in shared story making — when we share language and culture, when we can understand the same facts but come to different conclusions. What happens when we come with fundamentally divergent ways of understanding illness and lack the common language or frameworks to share a story? I’ll never forget the Hmong father I met as a medical student, who sat for days, upright, composed, and distinguished at the bedside of his 7-year-old, a puffy-faced girl who was suffering from nephrotic syndrome. He wanted to take her home to see their healer, who he believed could help more than the medicines we were giving her. The attending felt the girl was too sick to leave the hospital. The father said over and over again that the long ceremony at home is what would cure his daughter. The doctor thought she and her father had compromised on a visit home for a few hours, but when the patient didn’t return at the agreed-upon time, police were sent to the house to bring them back. When he returned to the hospital, the devoted father’s desolate wails highlighted the pain of being misunderstood by doctors who could not understand or agree with his story of how his daughter would heal. Our actions and, therefore, our care are extensions of our stories. In order to truly care for each other, we need to dedicate ourselves to overcome the innumerable barriers to understanding each others’ stories, no matter how far the chasm between them may seem. Stranded in our own story, we become alienated. Sharing a story gives compassionate and effective action a chance to arise. Priya M. Sury is an emergency physician. Source
