Jeff Henigson’s Story

Jeff Henigson was diagnosed with anaplastic astrocytoma in 1986. 35 years later, he received a call from neuropathologist Karl Schwarz saying Jeff never had cancer. What could have happened?

Anaplastic astrocytoma is a rare malignant brain tumor with a survival rate so low that Henigson’s current existence baffled medical professionals. When Henigson managed to survive for over 35 years, he was seen as somewhat of a medical miracle to all but Karl Schwarz. Having seen only three cases of anaplastic astrocytoma patients outliving their life expectancy, Schwarz recalled that two of them were misdiagnoses, that is they may never have had cancer in the first place. He promptly gave Henigson a call and told him that his survival was so unlikely that his medical records must be revisited. For their next phone call, Henigson was told to find his records.

As Henigson stared at decades of medical records sitting on his medical table he observed, “In one package was my treatment protocol: intensive brain radiation for six weeks, followed by six sessions of chemotherapy drugs to be delivered over the next year. My immune system responded poorly to chemo, so the therapy had dragged on for an additional six months.”

Out of the three reports found, two diagnosed Henigson with pilocytic astrocytoma, a highly curable and benign tumor. However, the third report was from a different hospital. It was a second opinion. And on the bottom, printed in black ink, was a completely different diagnosis: anaplastic astrocytoma.

Shortly after, Schwarz confirmed that Henigson was misdiagnosed.

Defining Diagnostic Error

Henigson’s situation is not uncommon. In fact, misdiagnoses are found in 10% to 20% of autopsies, indicating that between 400,000 and 800,000 patients die annually in the United States from diagnostic error (What is Diagnostic Error). Furthermore, diagnostic errors account for the most severe patient harm and the most malpractice claims, clearly demonstrating the magnitude of the problem at hand (What is Diagnostic Error).

An integral obstacle the healthcare system faces in lowering the rates of diagnostic error are contrasting definitions of the term. In a literature review, The Institute of Medicine determined that there are “varying definitions and terminology in use” to describe diagnostic error (Overview of Diagnostic Error in Healthcare). Through collecting definitions of diagnostic error from multiple renowned health professional, IOM was able to conclude that one universal definition would clear the confusion surrounding the term; their definition is: “the failure to (a) establish an accurate and timely explanation of the patient's health problem(s) or (b) communicate that explanation to the patient” (Overview of Diagnostic Error in Healthcare). This definition accurately represents the three errors that fall under the umbrella of diagnostic error: delayed diagnosis, missed diagnosis, and misdiagnosis. Delayed diagnoses refer to diagnoses made in an untimely manner. Missed diagnoses refer to a diagnosis not being made after persistent complaints from the patient. Finally, misdiagnoses refer to an incorrect diagnosis being assigned to a patient. The IOM asserts that the second part of their definition focuses on communication, another cause of diagnostic error (Overview of Diagnostic Error in Healthcare). The emphasis placed on collaboration between healthcare professionals and between family members and healthcare professionals in this literature review demonstrates that without a consensus in the healthcare community on the definition of diagnostic error and systems in place that maximize communication, the rates of diagnostic error will remain stagnant.

Impact on Public Health

From a global health perspective, the alarmingly high rates of diagnostic error are highly detrimental to the general population. For example, one in three people have had firsthand experience with misdiagnoses, which have been proven to be highly detrimental to a patient’s mental and physical health (Improving Diagnosis in Healthcare). In a survey conducted by Isabel Healthcare, when asked what their biggest concern was in visiting a family practitioner, 55% of the adults surveyed stated that they were afraid of getting inaccurately diagnosed (Improving Diagnosis in Healthcare). This can be confirmed by a study published in JAMA that in surveying 283 healthcare professionals about diagnostic error, there were 583 reported incidents (Diagnostic Error in Medicine). Not only has our healthcare system’s failure in drawing proper attention to this issue been detrimental for the public health of the nation but it has also created mistrust and fear in patients, making them less likely to visit hospitals in need.

Necessary Interventions

In a study conducted by Dr. Laura Zwaan, she found that out of the diagnostic adverse events in hospitals across the Netherlands, the most common causes were knowledge-based failures and information transfer failures generally referring to physicians not having enough knowledge to diagnose the patient, whether this be medical knowledge or updates about the patient (Overview of Diagnostic Error in Healthcare). In order to ease communication, the IOM suggests utilizing electronic forms of storing and editing records, guaranteeing that the newest version of the patient’s medical history is delivered and to invest in systems that simplify and expedite patient information transfer between healthcare professionals (Overview of Diagnostic Error in Healthcare). In line with strengthening communication, Tarnutzer suggests having both patients and doctors report errors that occur during the diagnosis process, maintaining a steady flow of feedback between the healthcare provider and the patient and emphasizing the importance of doctor-patient teamwork and the integral role that the patient plays in obtaining an accurate diagnosis.

Apart from communication, preventative measures are necessary. Tarnutzer suggests the use of a “trigger tool” on a patient’s electronic chart to identify if they are at high risk for diagnostic errors. For example, a patient being hospitalized shortly after a visit to their primary care physician is indicative of a possible diagnostic error that occurred at the visit to the PCP. This is important because due to the highly subjective nature of diagnoses, it is exceedingly difficult to identify a diagnostic error. Due to this trigger tool, healthcare systems will be able to trace the problem back, and even be able to utilize algorithms that can “identify risks and events related to the diagnostic process” for specific diseases and cases (Application of electronic trigger tools to identify targets for improving diagnostic safety).

Through taking preventative measures and strengthening the inter and intraprofessional communication, healthcare systems will be able to mitigate information transfer failures and gather data on potential diagnostic errors.

Conclusion

Improving Diagnosis in Healthcare views this healthcare reform as the next frontier in patient safety. Through combatting high rates of diagnostic error, the healthcare system will be able to construct a collaborative environment through information transfer systems, improve the quality of patient care, and increase the rates of patient engagement. The necessary interventions once taken will push us towards a new healthcare revolution, driven by data collection and transfer. The future of healthcare is one where no patient will have to endure the “fierce feelings of rage followed by floods of grief” Jeff Henigson did.