The folks who think about how we categorize causes of death are already thinking about the coming age of ICD-11. Lucky them.
Morbid aspects aside, this undertaking involves an intellectually challenging and fascinating pursuit: the formulation of the International Classification of Diseases mortality codes, Volume 11.
ICD-10 diagnostic designations for death, about 8,000 of them developed in 1992, have been in place since 1999. Now, explains Robert Anderson, chief of mortality statistics for the National Center for Health Statistics, "it's time for an update."
For sure, there will be more causes of death to code. After all, humans die in a growing assortment of ways, some of them bizarre.
Before this causes a fatal hypertensive episode in people who are barely able to fathom ICD-10 clinical codes, realize Anderson is not talking about codes soon to be implemented for clinical diagnoses. This ICD-11 edition will deal first with mortality, or the acceptable words doctors attending dying patients can write on certificates of death. (Yes, an ICD-11 clinical version is planned, but not in the near future.)
It's critically important. Until we know exactly why and how people die, how can we quantify these deaths and prioritize prevention?
Anderson notes that the last 20 years have seen the growth of new pharmaceutical products that can kill. Oxycodone overdoses, for example. Currently, deaths from oxycodone are labeled deaths from opiods. "Now, the only way to differentiate is to go back to the original text of the death certificate," Anderson says.
I wonder how many people in 1992 died from an overdose of propofol, the drug implicated in Michael Jackson's death.
There are new ways people die from or in motor vehicle accidents and there are new types of vehicles they can be killed in, such as the Segway.
Cancers are increasingly complex, and their subcategories much more voluminous. And people who die of diabetes, in many instances, have many contributing conditions that should be reflected.
And there are emerging infectious diseases, such as SARS, or other avian influenzas. "Right now, we have no way to code for those," Anderson says. When H1N1, or swine flu, emerged, "we had no specific code for it in order to track it. A code had been developed for avian flu a year or so earlier. So they just dumped H1N1 in with the avian influenzas." Or influenzas specified as originating in animals.
"A well-thought out revision of the flu codes is needed."
Other acceptable codes for cause of death now exist, but don't really explain much. They don't tell statisticians or epidemiologists why people die, Anderson continues. For example, there are codes for malaise and fatigue, and for shock and hemorrhage and edema. "These aren't very informative."
But as much as the smart people whose job it is to think about such things are trying to further delineate specific reasons for death, some are suggesting that for the very, very old, people over age 100, why bother?
An article in the Washington Post last week quoted several mortality cause experts saying that more and more people are living healthy lives well past the century mark, with no apparent sign of disease.
When they die, often there is no apparent cause. People are said to die of simple "old age." Their bodies just wore out. "The problem is it's not considered a legitimate cause of death. We can code it as a condition, but it is an ill-defined condition."
I wondered if there might be emotional reasons – say a reassurance to the family – to use such a term as old age. "Uncle Harry ran five miles every day until he was 102 and climbed Mt. Whitney last year. But yesterday, after breaking his lap record in the pool, he just died."
"There are situations where there are people who are apparently healthy and have no obvious disease. And when they die, what do you put down? Multiple organ failure? How does that tell us more?" Anderson asks.
At first, I didn't like the idea. Even at 100, I want to know a cause of death, especially if there are a lot of people ahead of me who get to be that age. Only then will we be suggest ways to live to be 110, if anyone really wants to live that long.
But Anderson explains that right now, there is just too much imprecision. Many hospitals have developed "a culture" of writing one cause of death down simply out of expediency, he explains.
"We saw it happen in New York City," where a few hospitals had a standard practice of certifying 95% of patients as dying of atherorschlerotic disease. "No way that was true. They were just using that as a default," Anderson says. "They knew it would get passed and no one would bother you."
When the statistics were examined, 40% of the patients who died in New York City from the late 1990s into around 2005 were dying of heart disease, "twice the national average," he says. It wasn't possible.
Anderson says that when city health inspectors investigated, they discovered "there was just a lack of understanding of what the data were used for. It turns out, doctors just thought it was an administrative document" with no real purpose.
He went on the lecture circuit for several years to clarify the importance of accurate coding, "and saw a few shocked faces. I could tell they were thinking, 'Oh crap. I've been writing whatever. And they're using this for statistics!' "
He and other mortality cause experts started speaking to large groups around the country to explain: "We use this information for setting national priorities and determining the leading causes of death. It's important information. If we get crappy information, we risk misallocating funds. It's a very big deal."
I asked Anderson if hospitals, such as those in New York City, had corrected the problem by now.
He replied rhetorically, "Don't I wish?"
"The situation In New York City is getting better, and they have done some interventions for some hospitals, and the rates have come down, Anderson said. "But there are still problems in funeral homes and nursing homes, where people say 'Let's just put this down and get it done. And everyone will be happy.' "
To some, making sure the death certificate reflects an accurate reason for death, including contributing causes, may seem like an administrative waste.
Maybe it does seem gruesome, but it is important. And any further refinement in the coding system can only help give us more information.
I, for one, want to know why people die.