Missed Diagnosis Visceral Leishmaniasis: A Tragedy of Note Bloat

Why It Matters

The tragedy demonstrates systemic vulnerabilities—duplicated notes and diffused responsibility—that delay diagnosis of treatable conditions, increasing preventable mortality. Strengthening EMR hygiene and assigning clear care ownership can improve patient safety across health systems.

Key Takeaways

• Note bloat hides critical diagnostic clues
• Travel history omitted from early infectious notes
• No single physician led care coordination
• Premature immunosuppression worsened undiagnosed infection
• Delayed broad pathogen testing cost patient’s life

Pulse Analysis

Electronic health‑record (EHR) note bloat has become a silent threat to patient safety. Studies such as the JAMA analysis reveal that over half of note content is copied‑and‑pasted, with duplication rates climbing from 33 % in 2015 to 54.2 % in 2020. This redundancy creates visual noise, making essential findings—like a travel exposure to leishmaniasis—easy to overlook. When clinicians read the same paragraph repeatedly, the information is perceived as already acted upon, eroding urgency and fostering false reassurance.

The Kean case also illustrates how fragmented multidisciplinary care amplifies diagnostic delay. Multiple specialties—rheumatology, hematology‑oncology, infectious disease, gastroenterology—each pursued their own differential without a designated care captain. Frequent handoffs and rotating teams are known to contribute to the majority of serious adverse events. In Kean’s trajectory, the lack of a single physician to verify test completion and synthesize findings allowed a critical PCR request to fall through the cracks, while premature immunosuppression for suspected HLH accelerated the underlying parasitic infection.

Addressing these failures requires both cultural and technical interventions. Health systems should enforce “note hygiene” policies that limit copy‑paste, promote concise documentation, and flag unresolved orders. Assigning a lead physician or case manager to complex patients ensures accountability for test follow‑up and multidisciplinary communication. Early involvement of infectious‑disease experts and rapid pathogen‑specific assays can further reduce diagnostic latency. By tightening documentation practices and clarifying leadership roles, hospitals can transform tragic oversights like Kean’s into preventable events, enhancing overall quality of care.

Missed diagnosis visceral leishmaniasis: a tragedy of note bloat

Arthur Lazarus, MD, MBA · February 15, 2026

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.

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The early clues

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.”

The test was never completed. 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.

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When the record becomes the obstacle

During Kean’s first June hospitalization alone his chart grew to 997 pages. Over five admissions it expanded into the thousands.

This is the ecosystem of modern “note bloat.”

As documented in JAMA, more than half of text in electronic notes (50.1 % across 104 million notes) is copied from prior documentation. The proportion of duplicated text rose from 33 % in 2015 to 54.2 % 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.

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Fragmentation without a captain

No single physician functioned 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.

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The HLH trap

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.

He wept with relief at having a diagnosis. But within days he was dying.

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Leadership delayed

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 post‑mortem 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:

• Who is the lead physician responsible for ensuring that recommended tests are completed?

• Who synthesizes input across specialties?

• Who revisits the differential when the patient worsens?

• Who calls the case conference before chemotherapy, not after death?

Without clear answers, complex patients are vulnerable. Systemic factors converge, for example:

• Note bloat obscuring critical, evolving information.

• Copy‑paste repetition creating false reassurance.

• Failure to confirm completion of requested diagnostic tests.

• Incomplete integration of travel history.

• Diffused responsibility across rotating teams.

• Cognitive anchoring on HLH and malignancy.

• Escalation of immunosuppression without definitive exclusion of infection.

• Hesitation to pursue broad pathogen testing earlier due to concerns about false positives.

• Lack of an early multidisciplinary case conference.

None of these factors alone explains the outcome. Together they create a death spiral.

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What this case teaches us

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.

Because sometimes the diagnosis is already in the chart. It is just waiting to be seen.

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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.