The lost humanity of listening deeply

“I have either an ileus or an obstruction,” I said to the emergency medicine physician, hoping this would prompt decisive action and change my course. I had endured 3 days of excruciating waves of diffuse abdominal pain and increasingly frequent episodes of diarrhea. I had finished a week of clinical service as a pediatric hospitalist and subsequently quarantined myself to prevent the spread of presumed viral gastroenteritis to my wife (KRB) and children. Every few hours, severe, crampy abdominal pain relentlessly woke me from sleep. As my abdomen became more distended, I developed the sensation that I was carrying my abdomen outside of my body; as if it were a weighted front-facing backpack. Even lifting myself out of bed challenged my pain tolerance as gravity seemed to tug my intestines further outside body. I kept checking for signs of peritonitis, but fatigue and discomfort muddled my ability to trust my exam. My urine output drastically decreased, progressively changing to a dark orange hue. On the third day of illness, I could no longer tolerate oral liquids. Fluid would accumulate in my stomach, seemingly rise all the way up to my left shoulder until I finally vomited, only for the cycle to repeat itself a few hours later. After retching a profuse quantity of bile, my wife brought me to the emergency department. On the way, my wife called a friend and hospital administrator, who dutifully checked the emergency department census and contacted the medical director. I was seen within 30 min by a physician who met me in triage, listened to my story, and drew my blood. Watching from a few feet away, my wife saw me wince and jump in pain during the abdominal exam. She waited for an acknowledgment from the physician of this finding, but it never came. Did she imagine an obvious sign of peritonitis? Should she speak up or would she be viewed as too demanding, or too biased? As a health care provider, shouldn't she trust the healthcare system? The physician moved on and disclosed that my creatinine was 2.8 mg/dL. My white blood cell count was 22,100 with 91% neutrophils. Despite my repeated pleas that there “was something wrong inside me,” the physician diagnosed me with acute kidney injury due to viral gatroenteritis. I was admitted to the observation unit with plans to repeat laboratory studies the next morning after administering parenteral fluids. The physician offered me the option of a CT scan, and I gladly accepted. Over the next five hours, I drifted in and out of sleep, intermittently calling my nurse, anxiously awaiting the results of the CT scan. As time passed, the fluid re-accumulated in my stomach. With a foreboding sensation of impending deterioration, my mind momentarily cleared, and a calmness permeated my body. Hanging on the wall, a sign directed patients to call their nurse for assistance. For emergencies, however, patients should activate the rapid response system by dialing a 5-digit number. I knew a rapid response was a “pre-code” alert system to identify deteriorating patients before their status necessitated a code. I had participated in countless rapid responses in my clinical practice. Between bouts of pain, I contemplated calling a rapid response on myself. Unsure if my condition merited emergency status and worried I'd be perceived as too demanding, I called my nurse again instead. If the CT results were still not available, I asked her to contact my attending physician and request that a surgeon review the images. If there was no change in management, I told the nurse I would need a nasogastric tube. Within 15 min, the surgery team informed me that I had a ruptured appendix and a significant ileus. Five hours following admission to an observation unit for acute kidney injury, I was wheeled to the operating room for emergency surgery. The surgeons successfully performed a laparoscopic appendectomy, irrigating a copious volume of purulent fluid that filled my abdominal cavity and extended from my pelvis to my diaphragm. I left the operating room with an abdominal drain and a nasogastric tube to evacuate the gastric and bilious fluids, allowing my intestine to slowly recover. Over the next 10 days in the hospital, my wife and I reflected on our shared experience as my abdominal pain slowly improved. We felt grateful to the providers, nurses, and staff for the care I received, knowing that I would walk away from this illness. From a hospital-centric perspective, my clinical course may represent a win. A middle-aged man presents with severe dehydration and imaging reveals a ruptured appendix, so he undergoes emergency surgery within 9 h of arrival and experiences no complications. We should all be so fortunate. But to us, it doesn't feel like an unequivocal win. Our feelings of loss and harm remain, as we feel an unexpected sense of fear and mistrust in the healthcare system, not just for ourselves, but for nonphysician family members and those with less societal power. Current and historical experiences, coupled with a vast literature base, demonstrate that individuals of color, those who live in poverty, those with less formal education, those who speak languages other than English, and individuals with limited health literacy likely would not have been so lucky. I wonder how many societal advantages and how much advocacy from patients are needed to ensure the healthcare system functions properly. I identify as a white, cisgender, heterosexual man with doctoral and postdoctoral training. Administrator phone calls preceded my arrival, alerting staff that a physician colleague would be arriving soon. My physician spouse accompanied me. I provided a medical etiology for my symptoms and pleaded with the physician to consider alternate diagnoses. From the hospital bed, I directed my medical care and requested a surgical consult. I brainstormed strategies to improve the likelihood that my physician would listen to me. Despite these advantages and efforts, I still experienced a missed diagnosis and prolonged hospitalization. Individuals from historically marginalized backgrounds likely would have fared worse than I did. It is uncertain whether a nonphysician with less education would have been given the option to undergo a CT scan, though it seems unlikely. My experience now offered a visceral, tangible way to internalize the impact of healthcare disparities. In sharing my story with friends and colleagues, I realize I am not alone. Harrowing healthcare encounters, it seems, have become accepted as the cost of doing business. “The Doctor,” painted by Sir Luke Fildes (1891), hangs on my office wall. It is one of my favorite paintings because it illustrates my vision of what it means to be a physician. In the scene, a doctor sits beside a sick child in a modest cottage, watching over them with quiet intensity. His posture and expression suggest deep contemplation. To me, the painting also reflects something every patient hopes: that their providers will listen to their story and think deeply about them. Why is it challenging for us as health care providers to listen deeply to patients? Cognitive biases play a part, but this explanation alone is insufficient. There are myriad reasons to consider: high clinical volume, understaffed units, persistent pressures to discharge patients, and nonclinical responsibilities. Each reason constrains a provider's time and attention, sometimes leading to management decisions that may reflect expedience more than careful clinical judgment. The perpetual bombardment of physician distractions, from cellular phone rings to pager beeps to electronic health record alerts, may be linked with misdiagnoses and a pervasive dehumanizing patient experience.1 My experience suggests this interpretation may at least contain traces of truth. Distractions limit a physician's ability to listen and contemplate, contribute to burn-out, and adversely affect clinical decisions. Such is the harried state of the US healthcare system. Recognizing the unintended shift away from human-centered care that has accompanied distractions, individuals and institutions have sought to restore the humanity to medicine and enhance quality. When able, physicians strive to promote deep thinking by instilling a diagnostic pause. Medical schools often include coursework that focuses on the inherent human element of providing medical care to others. Safety advocates endorse a principle of Zero Harm to prevent injuries and reduce physical harm.2 Necessary as they are, these measures fall short. They don't reliably create space for clinicians to connect with patients. No quality improvement initiative or root cause analysis will comprehensively enhance opportunities for physicians to listen to patients or adequately cultivate trust in the healthcare system. By optimizing the extraction of reimbursable clinical output, seemingly regardless of its impact on patients' experiences or health, our for-profit healthcare industry has misaligned incentives.3 Restoring humanity in medicine and rebuilding trust requires sweeping policy changes, particularly payment reform, long championed by patient advocates. To enable clinicians to listen to patients and sufficiently contemplate clinical decisions, a comprehensive restructuring of the healthcare framework would be necessary; clinicians would return to the bedside. If we are unable or unwilling to do so, we must ask ourselves: which initiative do we launch when the etiology of harm and mistrust is not a bug of the healthcare system, but a feature? The authors declare no conflicts of interest.