When 34 doctors are involved, who owns the diagnosis?
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When a disease lacks a diagnosis, like in this case, it can fall between the cracks of which specialty is driving the ship.
—Neima Briggs, MD, PhD
Some hospitals have policies that prohibit those specialists from ordering tests directly and instead can only recommend them to the primary team, while other hospitals give consultants more autonomy.
—Jared L. Ross, DO
Louis-Hunter Kean, a previously healthy 34-year-old, was repeatedly hospitalized due to high fevers, spleen and liver enlargement, and other unexplained symptoms beginning in 2022.
Over the next year, he’d see 34 specialists, but no one could determine the cause of his symptoms. They’d considered everything from blood cancer to autoimmune disease to infections. His condition remained undiagnosed until November 2023, when his organs failed, and he eventually died.[]
Shortly before his death, Kean was diagnosed with visceral leishmaniasis (VL), a rare parasitic infection that he likely acquired during travel to a rural area in Italy in 2021. Unfortunately, the answer came too late. Kean’s electronic health record (EHR) was filled with thousands of pages of notes, making it unwieldy and overwhelming, says Kean’s family, who are suing Penn Medicine for malpractice.
The lawsuit alleges that EHR disorganization and information overload may have contributed to his death. The lawsuit also notes that no doctor had ever recorded a full travel history (including Kean’s trip to Italy), and that test orders were never done. All of this, they say, delayed Kean’s diagnosis and his ability to get proper treatment.[]
What is visceral leishmaniasis?
“The disease is caused by the leishmaniasis parasite, which is transmitted by bites of sand fleas or sand flies,” says Suraj Saggar, MD, Chief of Infectious Disease at Holy Name Medical Center in Teaneck, NJ. “It can be severe and life-threatening”—as it was in this case. VL is systemic, attacking the bone marrow, liver, and spleen. “If you have an early diagnosis and treatment, you can get over 90% cure rates,” Dr. Saggar says. But in untreated cases, 95% of patients will die. Symptoms include fevers, weight loss, enlarged liver and spleen, and anemia.
Related: When 'note bloat' masks a fatal condition: The care team vs the EHREHR and patient ownership
According to research published in the Future Healthcare Journal, an under-recognized consequence of such a detailed EHR “is the effect it has had on ‘patient ownership’ and responsibility within the hospital.”[]
The researchers found that while EHRs have significantly improved access to patient information, they’ve also unintentionally weakened the traditional model in which one physician maintains clear responsibility for a patient’s overall care.
When so many eyes are on one EHR, responsibility becomes fragmented. In Kean’s case, it seems care was not coordinated through one single accountable doctor. This diffusion of responsibility, the authors say, can lead to a “collusion of anonymity.” Without clear ownership, patients can pay the price.
“Communication breaks down and division of responsibility becomes unclear”—a case of too many cooks in the kitchen, says Jared L. Ross, DO, an emergency medicine physician. He explains that even during routine inpatient hospitalizations, division of responsibility can be a challenge. “Often the primary team (usually internal medicine or hospitalists) might involve a wide array of consultants to get recommendations on the patient's care,” he says.
“There becomes complex dynamics when consultants make recommendations for specific testing. Some hospitals have policies that prohibit those specialists from ordering tests directly and instead [they] can only recommend them to the primary team, while other hospitals give consultants more autonomy,” Dr. Ross continues.
Neima Briggs, MD, PhD, an infectious disease specialist and Instructor of Medicine at Yale School of Medicine, agrees. “When a disease lacks a diagnosis, like in this case, it can fall between the cracks of which specialty is driving the ship,” he says.
So, what can be done?
Related: The rare infection hidden in a 'medical mystery'... and the EHRFinding a better way
“In order to ensure recommendations are followed,” Dr. Briggs notes, “as a consultant, I must communicate directly with the primary care team and patient, as well as follow up” to ensure that orders are entered in a timely and correct manner. He echoes Dr. Ross’ statement, though, on how autonomy can differ greatly between institutions.
The goal is to establish clear communication.
“In situations where the diagnosis is a mystery and the patient is failing to improve, I encourage a multidisciplinary meeting with the patient/patient’s family involved,” Dr. Briggs adds. “I have found many times that the patient or their family is essential to retaining knowledge between different facilities and teams, and strongly encourage one of them to be involved in all major discussions.”