Missed diagnosis visceral leishmaniasis: a tragedy of not…

As reported in the Philadelphia Inquirer, Louis-Hunter Kean was 34 years old when he died in November 2023 at the Hospital of the University of Pennsylvania (HUP). For more than a year, he endured cyclical fevers as high as 104.5 F, drenching night sweats, pr…

As reported in the Philadelphia Inquirer, Louis-Hunter Kean was 34 years old when he died in November 2023 at the Hospital of the University of Pennsylvania (HUP). For more than a year, he endured cyclical fevers as high as 104.5 F, drenching night sweats, profound fatigue, hepatosplenomegaly, cytopenias, and escalating inflammation. Over six months in 2023, he was hospitalized five times. His electronic medical record ballooned to thousands of pages.

At least 34 physicians across multiple specialties participated in his care. The final diagnosis, visceral leishmaniasis, likely acquired during travel to Tuscany in September 2021, came only days before his death. By then, he was intubated in the MICU, suffering multi-organ failure, brain hemorrhages, and overwhelming opportunistic infection. The tragedy is not simply that a rare disease was missed.

It is that the clues were present, repeatedly documented, and then lost in the noise. This case offers a sobering lesson about note bloat, fragmented care, and the absence of clear medical leadership in academic medicine. By June 2023, clinicians recognized that Kean’s presentation was “extremely puzzling.” Infectious etiologies were on the differential. An infectious disease specialist explicitly listed “visceral leish” in the chart, seven times, via copy-and-paste, and requested that a liver biopsy be sent for “broad-range PCR.” Nor was a targeted leishmania PCR ordered.

Nor was a rapid serologic test sent. Nor was there documentation of follow-up on the requested broad-range assay. Meanwhile, a critical travel history, Tuscany, Italy, in 2021, was reportedly shared by the patient and his fiancée but did not appear in early infectious disease notes. The parasite responsible for visceral leishmaniasis circulates in Southern Europe. Although rare among U.S. travelers, it is not unheard of.

The disease can remain dormant for months or years. Untreated, it is fatal in the vast majority of cases. Treated early, it is often curable. Kean had persistent fever, hepatosplenomegaly, and cytopenias, classic features. The possibility was raised. It was not pursued. During Kean’s first June hospitalization alone, his chart grew to 997 pages. Over five admissions, it expanded into the thousands.

As documented in JAMA, more than half of text in electronic notes, 50.1 percent across 104 million notes, is copied from prior documentation. The proportion of duplicated text rose from 33 percent in 2015 to 54.2 percent in 2020. Copy-paste tools, templated imports, and auto-populated fields were designed for efficiency and billing. Instead, they often produce cluttered, redundant notes that obscure clinically meaningful changes.

In Kean’s chart, “visceral leish” and the PCR request were repeated multiple times. The repetition may have created the illusion of action. When clinicians read the same text over and over, it becomes background noise. The brain registers familiarity, not urgency. In such an environment, it becomes dangerously easy to assume that “someone else” followed up. Note bloat does more than waste time.

It fragments attention. It diffuses responsibility. It hides the signal in the static. No single physician appeared to function as the clear clinical quarterback. Rheumatology, hematology-oncology, infectious disease, gastroenterology, and internal medicine each searched for explanations within their domains. Rheumatology considered autoimmune causes. Hematology-oncology pursued malignancy and hemophagocytic lymphohistiocytosis (HLH).

Infectious disease weighed possibilities but did not close the loop on testing. During one handoff, physicians noted that they did not see results from the previously requested PCR. Still, no documented follow-up occurred. A hematology-oncology trainee suggested Karius testing, a broad, blood-based assay capable of detecting over 1,000 pathogens, including Leishmania, but raised concern about false positives.

The test was not performed at that time. In academic medical centers, high-frequency handoffs and rotating teams increase risk. Studies link inadequate handoffs to the majority of serious adverse events. When no single attending asserts longitudinal ownership, patients drift between services. Responsibility becomes collective, and therefore diluted. Kean’s family described the care as “helter-skelter.” They perceived that “no one was paying attention to what the doctor before them did or said.” Whether entirely accurate or not, that perception itself reflects a breakdown in leadership and communication.

As Kean deteriorated, clinicians feared HLH, a life-threatening hyperinflammatory syndrome that can be triggered by malignancy, autoimmune disease, or infection. Untreated HLH can lead to rapid organ failure. In such cases, physicians must often treat while still searching for a cause. High-dose steroids and immunosuppressants were initiated. Later, chemotherapy was added. These therapies can be lifesaving in true primary HLH or malignancy-associated HLH.

But in infection-triggered HLH, especially parasitic infections like visceral leishmaniasis, aggressive immunosuppression may accelerate pathogen proliferation. Parasitic disease experts have described this as a classic error: increasing immunosuppression in an undiagnosed infection that itself is the trigger of immune dysregulation. As Kean’s immune defenses were dismantled, his condition worsened.

He developed massive inflammatory markers, worsening transaminitis, and ultimately a necrotizing fungal infection in his lung. By the time the NIH-recommended Karius test was finally performed in November 2023, months after it was first suggested, it returned positive for Leishmania donovani/infantum. It is notable that the breakthrough came when a rheumatology fellow contacted the National Institutes of Health.

Seeking external input was an act of intellectual humility and leadership. However, it came too late. After Kean’s death, the family was informed that Penn physicians conducted a postmortem review to learn from the case. His sister asked a piercing question: Why was not that meeting held while he was alive? Strong medical leadership does not eliminate uncertainty. But it demands accountability: Without clear answers, complex patients are vulnerable.

Systemic factors converge, for example: None of these factors alone explains the outcome. Together, they create a death spiral. Louis-Hunter Kean’s death is a tragedy for his family. It should also be a clarion call for all of us. We must shorten our notes. We must close the loop on tests. We must lead with clarity. And when the picture is “extremely puzzling,” we must widen the lens, not bury the clue in another copied paragraph.

Arthur Lazarus is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia. He is the author of several books on narrative medicine and the fictional series Real Medicine, Unreal Stories. His latest book, a novel, is JAILBREAK: When Artificial Intelligence Breaks Medicine.

Summary

This report covers the latest developments in artificial intelligence. The information presented highlights key changes and updates that are relevant to those following this topic.

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