Rita Head was shocked and speechless when she saw her mother’s death certificate list “Alzheimer’s disease” as the cause of death.
Frances “Nanny” Hobday suffered from a chronic lung infection for more than 30 years. But she completed her career as a nurse at the University of Alabama at Birmingham, managed her own finances, and led a vibrant, independent life, dedicated to her family and faith.
In a testimony she wrote before she died, Nannie wrote that she had always wanted to be a soul saver. She shared the gospel with everyone, including her patients.
Nannie battled bronchiectasis (a condition that causes the airways to become damaged and blocked) caused by recurring infections in the last year of her life, enduring hospitalizations, home medical care, and hospice care before passing away on January 29, 2023, at the age of 89.
Nannie had never been diagnosed with Alzheimer’s disease by any doctor, nor had medical professionals ever suggested the possibility of Alzheimer’s to Head or her family. The one brain scan done on Nannie was determined to be normal for her age.
Doctors said Nanny was in a state of delirium, a sudden-onset, fluctuating cognitive impairment likely caused by a raging infection in her lungs. Her white blood cell count was sky-high at times and, despite intravenous antibiotics, never returned to normal after her initial hospitalization in February 2022.
Nannie Hobdy and her husband Jim. (Photo by Leta Head)
cause of death
So how did they determine that Alzheimer’s was the cause of Nannie’s death? Little did Head know the ordeal she was about to face when she posed the question to the agency managing her mother’s home health and hospice care.
The prevalence of errors in modern medical records has been well documented in publications such as JAMA, but in today’s age of digital record management and accessible patient portals, these errors may also be more easily spotted and reported by patients and their caregivers.
In Head’s case, she requested physical copies of her nanny’s health records and made a key discovery: A few months after her mother’s treatment had begun, a visiting nurse had noted Alzheimer’s disease as an underlying condition in a report in late September 2022.
Somehow, during the claims process, the home health agency replaced Nanny’s primary diagnosis of “bronchiectasis with acute lower respiratory tract infection” with an unconfirmed diagnosis of Alzheimer’s disease. In other words, her cause of death was determined based on guesses and coding errors made during a single home health visit.
The problem seemed simple to resolve, but Head’s attempts to do so were met with months of resistance from the home health agency, which refused to admit it had made a mistake. It took Head almost a year to reach a resolution, and she eventually had to take her concerns to the agency’s CEO.
Head’s main motivation was to honor her mother’s legacy.
“My mother lived a life of honor and integrity,” she said, “and it is my goal to make sure that no one who is grieving the loss of a loved one ever has to go through this.”
Head was also mindful of her family’s health history. She didn’t want her mother’s death certificate to mislead family members who might one day seek medical answers through genetic genealogy. Nanny’s records needed to reflect an accurate cause of death for her current loved ones and future generations.
Unfortunately, while reviewing her mother’s records, Head discovered another problem: somehow Head’s Social Security number had been used in place of her nanny’s in one particular part of the file. Head contacted the Social Security Administration to verify that she had not been reported as dead or dying, and that no claims had been filed using her identity.
Ultimately, it was Head’s misuse of her Social Security number (a violation of privacy laws) that likely helped resolve the error on Nanny’s death certificate.
Head is sharing her story to help others understand the value of making sure their medical history is correct.
She shares two tips based on her own experience:
1. Be sure to ask for the records.
Healthcare providers keep extensive files and notes on patients, and while patients may never see more than a summary, they have the right to inspect, review, and receive copies of their medical and billing records.
In home care, patients and their families often have limited access to medical and nursing records. Caregivers like Head are given a tablet at the end of the visit and asked to sign it, primarily as evidence of services provided. In some cases, the visit record doesn’t even appear on the device at all.
“There’s nothing up there [your signature] “Or even less,” Head recalled. “You don’t really know what you’re signing.”
Home health agencies are obligated to provide records upon request. Timely requests for digital or physical copies of records after each visit are important to provide the best care for your loved one. Good record-keeping is the best way to avoid mistakes and ensure that you and your health care provider are on the same page. Taking this extra step will protect you and the agency you work with from future disputes. “Trust, but verify,” Head recommends.
2. Be an advocate.
Head faced great challenges in honoring her mother’s legacy. “At times I got very discouraged and really wanted to give up,” she said. But her decision to continue on the path was deeply rooted in her love for Nannie and God’s Word. “Of the Ten Commandments, the only one that has a promise is, ‘Honor your father and your mother, and thy days shall be long on the earth.'” The phone calls, emails, weekly research and sifting through hundreds of pages of records have been worth it for Head.
Older adults need our support when they are sick or injured because they are often too frail to communicate their needs. Patient and family education about delirium is especially important. Suspected Alzheimer’s disease is very common among older patients recovering from surgery or being treated for infection, trauma, or drug reactions.
According to the National Institutes of Health, “the incidence of delirium increases with age,” and its incidence “ranges from 8 to 17 percent of elderly patients admitted to emergency centers to as high as 40 percent of nursing home residents.” It is not uncommon for health care providers to assume dementia in elderly people without knowing their past medical history.
The NIH outlines the dangers of this assumption: “It is critical to distinguish between delirium and dementia,” it says.[t]These are two distinct pathological processes with different management and prognosis.’ Compared to dementia, delirium is much more ‘preventable and reversible’.
Head hopes that by sharing Nannie’s story, she can help others get better care for their loved ones and be more conscious about the accuracy of their medical records.
“If my mother’s story can change just one person’s life, it will have all been worth it,” Head began.
