Completing Death Certificates For Patients With Alzheimer Disease

According to the latest available mortality data from the Centers for Disease Control and Prevention (CDC), in 2014 there were 93,541 deaths in the United States due to Alzheimers disease (AD), making AD the 6^th leading cause of death in this country. However, the CDC also acknowledges that this number of reported deaths due to AD is actually much larger.  “Dementia, including Alzheimer’s disease, has been shown to be underreported in death certificates and therefore the proportion of older people who die from Alzheimer’s may be considerably higher.”

Indeed, a study of 2566 people aged 65 and older, funded by the National Institute on Aging (NIA) in 2014, concluded that deaths attributable to AD far exceed the annual numbers reported by the CDC, “notably 5 to 6 times higher. Our figure suggests that AD may be the third leading cause of death after heart disease and cancer.” Citing more than 20 years of previously reported research, authors of this study also found that, whereas death certificates may correctly list the immediate causes of death on death certificates, “dementia is often omitted as an underlying cause. It is well documented that AD and other forms of dementia are underreported on death certificates.”

Omitting AD as a significant factor contributing to the death of their AD patients, even if unable to ascertain that AD was directly related to the immediate cause of death, is a tremendous disservice for two extremely important reasons.  

First, at the risk of stating the obvious, according to the CDC, “Quality of mortality data is largely dependent on proper and thorough completion of death certificates by certifiers.” So if AD is not mentioned anywhere on death certificates, AD will not be considered as a cause of death in the CDC mortality data. Doctors and nurses should understand that if AD was more often reported as a “significant condition” on death certificates, perhaps our National Institutes of Health (NIH) would make AD a higher research funding priority. 

Actual NIH funding for AD was under $600 million for fiscal years (FYs) 2012-2015, and estimated funding for FY 2016 and 2017 was $910 million. Contrast that with NIH funding for the CDC’s top two leading causes of death: heart disease and cancer. Research funding for heart disease/cardiovascular disease/coronary heart disease topped $3 billion in each of those same 6 years, and cancer received more than $5 billion for FY 2012-2015, with estimated spending for 2016 and 2017 at $5.6 billion and $6.3 billion, respectively. And those totals are in addition to separate NIH categorical funding of $600-$800 million for research just in breast cancer, and additional hundreds of millions of dollars in funding for other identified cancers (pancreatic, lung, etc) in each of those same years.

Imagine how much further along we might be in our understanding of the causes of AD and how we might treat it effectively, or possibly even prevent or cure AD, if annual NIH research funding for AD were at the same levels as annual NIH research funding for heart disease and cancer. Just over the last 6 years alone, that would have meant an additional $15-$22 billion more for AD research.

A second reason for why I feel more doctors and nurses should write AD on death certificates is more personal. After a 10-year struggle with early onset AD, my wife passed away in a nursing home (NH) last year, 1 month before her 70th birthday. When I received a copy of her death certificate, “Alzheimer disease” did not appear anywhere on that form. “Cardiopulmonary arrest” was listed as the immediate cause of death in Section 30, Part I. Section 30, Part II it reads: “Other significant conditions leading to death but not related to cause listed in part I” ... was left blank. That stunned me…and angered me. 

CDC issues “Instructions for Completing the Cause-of-Death Section of the Death Certificate.” Those instructions indicate that “Part II is for reporting all other significant diseases, conditions, or injuries that contributed to death but which did not result in the underlying cause of death given in Part I.”

When I called my wife’s NH doctor to ask why AD was not listed in Part II of her death certificate, he explained that he could not be sure that AD played any role in her death due to her heart history. While I could certainly respect his position, I noted that even with her 15 years of dealing with heart issues before her AD diagnosis, if my wife didn’t have AD, she would have lived a much healthier life style during her last 10 years. For example, she would have continued to exercise daily, eat nutritiously, sleep well, and enjoy a relatively anxiety-free life style—a lifestyle she was no longer able to maintain as her AD worsened.

I also reminded the doctor that 4 months earlier, my wife’s increased anxiety and aggressive behavior caused her to be placed in a psychiatric hospital for 21 days. Since then, she had been taking powerful antipsychotic medication. Heavy-duty atypical antipsychotics come with warnings of complications when taken by people with AD because, as one study reported, “atypical psychotics doubled the risk of sudden death from heart-related causes, most likely by causing disturbances in heart rhythms.” But, after listening to all I had to say, the doctor still did not see any valid reason for adding AD to Part II of the death certificate as a significant factor contributing to her death. We simply agreed to disagree.

When my wife was initially diagnosed with AD, she agreed to donate her brain for research so her death might, in some small way, contribute to an eventual discovery of a cause, or effective treatment, or means of prevention or cure for AD. (Her brain autopsy, in fact, revealed that “the level of amyloid plaque and the tau neurofibrillary tangle pathology can be classified as moderate to severe for the relatively young age of Mrs. Vann.”)  Again, indicating AD as a significant condition would have added to mortality statistics that may possibly lead to increased NIH funding for AD research in the future. This would have been another way in which my wife’s death may have contributed to a better future for others.

The medical profession has years of research supporting the conclusion that AD “contributes to death insidiously over the course of years through a cascade of events.” So the question to ask, it seems to me, is how can doctors and nurses not list AD as a significant condition on death certificates for AD patients?

I think that the 2014 NIA study had it right: “Multiple factors may contribute to death in the elderly, some proximate and some distal. The elimination of any one of them may allow the individual to live longer.”

Until I read convincing research to the contrary, I will continue to support the conclusion of that NIA study that the elimination of AD may have allowed an individual to live longer. In my opinion, this is reason enough for AD to be listed in Part II of death certificates as a significant condition contributing to death, even if not related to the immediate cause of death.

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 Dr Vann writes a monthly Commentary blog column for the Annals of Long-Term Care journal, which is one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, on November 29, 2017.  Access commentary at: https://www.managedhealthcareconnect.com/blog/completing-death-certificates-patients-alzheimer-disease