Cedar Rapids man pushes for nationwide change in reporting Alzheimer's deaths

'This was a legacy for my wife'

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CEDAR RAPIDS — When Ken Kirby’s wife, Bernice, died in March at the age of 89, he was confused as to why the attending physician recorded her cause of death as a myocardial infraction — what’s commonly known as a heart attack.

The past 10 years of Bernice’s life were spent fighting Alzheimer’s, Kirby said, and he watched as the disease took her from him bit by bit.

It was so clear to Kirby — the Alzheimer’s killed Bernice, not the heart attack.

So he worked with his friend Kathy Good, director of the Family Caregivers Center of Mercy in Cedar Rapids, which offers free support and services to individuals caring for loved ones, and Mercy Medical Center’s Dr. Tim Quinn to talk with the physician to change the death certificate.

But Kirby realized that if it was recorded incorrectly on his wife’s death certificate, it was likely incorrectly recorded on others’ as well. That includes Good’s husband, David, who was diagnosed with Alzheimer’s and died in May 2015.

“I went back and checked,” Good said. “Dave’s death certificate said he had a heart attack. His death wasn’t from a heart attack.”

“Before Dave died, he stopped swallowing,” she continued. “But that’s because the part of his brain that controlled swallowing stopped working.”

Alzheimer’s is a progressive neurological disorder that mostly affects older individuals.

There are more than five million Americans living with Alzheimer’s in 2016 and about 63,000 in Iowa, according to the Alzheimer’s Association. What’s more, it’s the fifth leading cause of death for people 65 years and older in the United States and the sixth leading cause of death in Iowa. More than 1,252 Iowans died from the disease in 2013.

But the association believes this number is underreported, with a 2016 report pointing out that death certificates for individuals with Alzheimer’s often list conditions such as pneumonia or malnutrition as the cause of death.

That underreporting can add up — fast.

“Deaths are reported to the (Centers for Disease Control and Prevention in Atlanta), which adds up those numbers, and then money is allocated for research,” Good said.

Alzheimer’s can be improperly recorded, Quinn said, because filling out a death certificate can be a restrictive process.

“It can force you into reporting things a certain way,” he said. “So if someone with advanced stages of Alzheimer’s dies from pneumonia, doctors put that, they’re guided to do that. But we’re missing out on the real driver for the death ... and there are downstream consequences.”

So Kirby wrote to Dr. Tom Frieden — the director of the CDC.

Kirby — who was vice president of research at Penford Corp. before retiring in 1991 — pointed out to Frieden that the CDC’s Physicians’ Handbook on Medical Certification of Death, which contains instructions and guidelines for physicians to follow, states that the principal disease must be recognized as the disease that initiated the events that lead to death.

“Most physicians do not follow this section, and when aspiration pneumonia precedes the actual death it becomes the immediate cause of death,” he wrote. “This robs the Alzheimer victim from reporting an Alzheimer death for CDC reporting to Congress, and research dollars are lost.”

Kirby added that while the handbook provides example conditions a physician could follow to report a death, there were no examples for Alzheimer’s. He suggested that the CDC create and issue a supplement to the handbook with examples, such as Alzheimer’s leading to pneumonia.

“The physicians and pathologists would take note, and research would benefit the people in the way that heart and cancer patients now live extended lives because of the research, which has benefited their lives,” he wrote. “Research is the answer to problems. I have been in research all my life and I know it works.”

The letter Kirby received in response was a surprise.

It was from Charles Rothwell, director of the CDC’s National Center for Health Statistics.

“Your suggestion to include examples involving Alzheimer’s dementia in the handbook is a good one,” Rothwell wrote.

Physicians likely underreport Alzheimer’s on death certificates, Rothwell said, because they do not understand the need for specificity, or they report the immediate cause because they were focused on treating the complications of the disease — infection, malnutrition, pneumonia.

Physicians need training to better certify the cause of death on death certificates, he went on to say, and the CDC is working to do just that.

He told Kirby the agency is developing an electronic version of the handbook that will include examples involving Alzheimer’s as well as developing online provider training, with specific Alzheimer’s examples.

“We plan to disseminate both the app and the e-learning module widely among physicians and hope that these will help us to improve the quality of cause of death statistics and for the Alzheimer’s mortality in particular.”

Kirby hopes this additional training and material will help physicians better understand the importance of including Alzheimer’s on a death certificate.

“If this works how I hope it should, how I think it should — this can mean millions and millions (of dollars) for research, maybe even billions,” he said.

But even more than that, Kirby said he was happy that he could keep caring for his wife of 68 years, even though she is no longer alive.

“This was a legacy for my wife,” Kirby said. “It’s the best thing I can do for her — I can’t do any more for her now.”

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