Hundreds of California patients incorrectly recorded as alive despite actually being deceased

By Stephanie Srakocic | Fact-checked by Davi Sherman
Published December 6, 2023

Key Takeaways

  • Research by the UCLA Health team reveals a significant data gap regarding patient records. Of the almost 3,000 records examined, 20% of patients were recorded as alive but were actually deceased.

  • This discrepancy is attributed to California laws restricting the use of full death data for certain purposes.

A University of California (UCLA) Health research team has discovered that about 20% of patients whose medical records showed them as being alive were actually deceased. The UCLA team published its findings in a December 4, 2023 letter.[] []

The research shows that the data gap is due to a California law that restricts the use of full death data for the purposes of either law enforcement or fraud prevention. Although the National Association for Public Health Statistics and Information Services maintains a real-time death database, this information is unavailable to health organizations. 

For two years, until November 2022, the researchers tracked 11,698 adults treated with serious illnesses across 41 UCLA Health clinics. They compared health records against data from the California Department of Public Health Public Use Death File. A portion of the data was reviewed by hand. The Department of Public Health file contains birthdates, full names, and sex, but not social security numbers, which are only available for fraud prevention in California. The patient data accessed included notes, letters, messages, telephone calls, prescription refills, orders, and portal messages.[][]

In total, 2,920 tracked patients were correctly noted as deceased in their medical records. However, 676 patients believed to be alive, based on their medical records, were actually dead, according to the California death records. Of those 676 patients, 541 had an appointment or phone encounter pending.[]

It was noted that 221 had received letters about preventative care, and 166 had received mailed correspondence. Additionally, 88 medications were authorized, 158 had orders placed for vaccines and other care, and 145 had scheduled appointments.[] 

The study found that inaccurate death information harmed the health clinic’s ability to deliver care in multiple ways. It concluded that the inaccurate information led to poor healthcare management and wasteful communications about unneeded services, such as future appointments or prescription renewals. Additionally, not having death records prevented health clinics from recording and learning from adverse patient outcomes and providing family support.[] 

The authors write, “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.”[]

The paper’s lead author, Neil Wenger, MD, Professor of Medicine in the Division of General Internal Medicine and Health Services Research at UCLA’s David Geffen School of Medicine, hopes that this new research can bring attention to what he calls an “easily solvable problem.” []

“The state has a database that can identify most of the patients who die, but current law prevents them from giving it to health care institutions; only financial institutions. Perhaps highlighting this problem will raise awareness and help to fix this issue,” Dr. Wenger says. 

Keeping records updated

As the study’s authors conclude, multiple concerns can arise when healthcare records don’t accurately reflect whether a patient is alive or deceased. Healthcare offices attempting to contact these patients use time and resources that could be better spent on other tasks. Similarly, prescription renewals approved for deceased patients are a poor use of both health clinics’ and pharmacies’ time. Inaccurate records also make it difficult for physicians to understand a patient’s disease course fully. 

Data availability, such as death records, is one of many things that varies from state to state. In some states, death records are public records, making it easier for healthcare providers to search for patients.

However, in states like California, death records can be more challenging to access, and healthcare clinics can miss deaths. As a policy, some hospitals inform primary care providers about patient deaths, but this isn’t always the case. When patients pass away in hospitals that are part of the same healthcare system as their primary care doctor, the information is also typically passed along in electronic medical records. 

Unfortunately, in many other cases, it can be a challenge for physicians and healthcare offices to receive word of patient deaths, especially without the ability to access centralized records databases. Without this access, a systemized solution may be difficult. Some people, such as Dr. Wenger, have suggested allowing providers access to these databases. 

Until changes to laws and regulations are made, surviving family members are often responsible. Medical providers frequently don’t know that a patient has died until a family member responds to a phone call or letter and passes on the information. This slow and inefficient way of receiving information can leave medical records inaccurate for months. Sometimes, it’s the only option medical offices have at their disposal.

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