Dead Men Do Tell Tales!
When patients die, everyone is usually in the know: relatives, caretakers, doctors. But due to system errors, deceased patients often keep on living — at least on paper. What are the consequences?
Ana Lagger | DocCheck Team
What happens to the whole pile of health-related data when a patient dies? And how do institutions actually know that a person has died? These are questions that the US healthcare system should urgently ask themselves, as a recent analysis shows: health records don’t always show when patients are dead.
How It All Began
The fact that many dead patients are not labeled as such in the American system was a purely coincidental observation. It all began with research by Prof. Neil Wenger, who discovered that many of the patients who were eligible for follow-up had died in the meantime — without the hospitals or respective doctors knowing about it. “When I found a bunch of them were dead and we didn’t actually know it, that’s when I said we need to describe it,” says Wenger. “This is a cohort where we need to know about everyone who is dead.”
With their work, the researchers want to find out how many active patients in the electronic health record (EHR) have actually died without the system knowing. Wenger and his team examined a cohort of over 12,000 seriously ill, continuity primary care patients (aged ≥18 years, ≥2 primary care visits during the previous year) in 41 clinics. Deaths were recorded in the EHR as standard. Patients were followed up for two years.
These Are The Results
“On December 19, 2022, we compared the seriously ill primary care cohort alive according to the EHR against the California Department of Public Health (CDPH) Public Use Death File,” say the study authors. “We identified medical record encounters (letters, notes, orders, portal messages, telephone outreach, appointments, and refills) that occurred after death until December 19, 2022. […] Each encounter among a 10 % random sample was reviewed to identify those related to the death or postmortem paperwork. The proportion of death-related encounters within each encounter category was applied to the full sample to estimate encounters unrelated to death.”
Of 11,698 patients, 25 % were reported as dead according to the EHR, while 2,920 patients were declared dead according to the CDPH death files but were still alive according to the EHR. Of the patients of whom the authors were not sure whether they had died or were still alive, 80 % were contacted regularly about their health. This involved, for example, reminders about vaccinations or preventive screenings — all patient contacts that cost a lot of money, take up a lot of time and offer no added value for anyone.
Knowing About Death
The authors of the study argue that all these misunderstandings and unawareness of deaths could be avoided. “Unawareness of patient death is remediable because each state maintains a death file.” In addition, the National Association for Public Health Statistics and Information Systems maintains a real-time fact of death service, to which health organizations do not yet have access.
“Not knowing who is dead hinders efficient health management, billing, advanced illness interventions, and measurement. It impedes the health system’s ability to learn from adverse outcomes, to implement quality improvement, and to provide support for families,” say the study authors. In addition to these factors and the resulting costs, this could also have a major impact on research. This is because many patients who have already died could be inadvertently included in scientific cohorts and falsify their results.
As the study was only conducted in a single healthcare system in California, the results are difficult to transfer to the entire US, especially as each state has its own legislation regarding the sharing of healthcare data.
Image source: Aakash Dhage, Unsplash
