A Public Death: States blocking better data on pregnancy-related deaths

Nine hold out states are preventing the United States as a whole from addressing its high rate of deaths related to pregnancy and childbirth.

And they’ve been holding out for 10 years.

I almost didn’t believe it when I read it. Crystal Lewis with Women’s eNews reported this month that a simple change to death certificate forms was intended to help gather better information about how and when women die from maternal causes. Lewis wrote:

In 2003, the CDC revised the U.S standard certificate of death to include a check box question pertaining to a woman's pregnancy status. The options help determine if the woman was pregnant at the time of death, pregnant 42 days before death, pregnant 43 days to one year before death, not pregnant or unknown.

With this information, federal and state governments can monitor and respond to trends in maternal deaths. For example, as Lewis notes, “Pregnancy-related death rates for black women are 35.6 deaths out of every 100,000 births, far higher than the 11.7 figure for white women, according to 2009 data from the CDC.” That should tell policymakers that they need to ensure that black mothers are getting access to the right care during their pregnancies and deliveries, and that other factors that can make a maternal death more likely – high blood pressure, obesity – are being addressed.

So which states are lagging behind? It’s not just states with lower populations and smaller tax bases, as you might have imagined. It’s a mix of small places and states with generally good track records on taking health issues seriously. All of them have plans to change the death certificate, but they have yet to implement those changes. According to Women’s eNews, in 2014, these seven states are supposed to finally make the switch: Alaska, Hawaii, Maryland, Massachusetts, North Carolina, Virginia and West Virginia. In 2015, the final two holdouts are planning on transitioning to the new death certificates: Alabama and Colorado.

Until then, the U.S. Centers for Disease Control and Prevention is not updating maternal mortality rates.

"We stopped reporting national maternal mortality rates because of the state differences we were finding in the reporting," Robert Anderson, chief of the CDC’s Mortality Statistics Branch, told Lewis. "We decided that the rates we were reporting were not accurate and not comparable year to year, because of the yearly increase in the number of states implementing the new certificate. Once all states are using the new certificate, we will begin reporting maternal mortality for the U.S. again."

What makes this more troubling is the fact that the United States is already late in addressing its high rates of maternal mortality. In 1991, a study on Puerto Rico showed that adding the pregnancy check box could greatly increase reporting of maternal deaths. In 2011, a study in Maryland showed that most pregnancy-related deaths were captured by the use of these check boxes. Isabelle Horon, director of the Maryland Vital Statistics Administration, and Dr. Diana Cheng, medical director for the state’s Office of Surveillance Quality Initiatives, wrote in Public Health Reports:  

Overall, 64.5% of pregnancy-associated deaths were identified through pregnancy check boxes on death certificates, including 98.1% of maternal deaths—defined as deaths occurring during pregnancy or within 42 days of delivery from any cause related to or aggravated by the pregnancy or its management but not from accidental or incidental causes.

Public health researchers use statistical methods to overcome gaps in the data. The latest findings on maternal mortality by country – published in The Lancet last year – show that the death rate from maternal causes in the United States was more than twice that of rates throughout Europe.

"Maternal deaths will remain a hidden tragedy until we have better and more reliable data about them," Dr. Edward R.B. McCabe, senior vice president and chief medical officer of the March of Dimes, told Lewis. He added:

It's crucial for states to adopt standardized death certificates so that the CDC and other public health experts can collect and analyze information from each state and look for trends and patterns in maternal risk factors. Without accurate information, we can't take the proper actions to prevent the needless deaths of mothers.

And what’s the biggest reason that states have stumbled in adding a check box to their death certificates? This will be familiar to anyone who has followed the travails of the Affordable Care Act implementation. Lewis wrote:

The most common hang-up is caused by problems introducing electronic systems for death registration. … North Carolina officials were planning to institute the 2003 changes when [the state] created an electronic death registration system. Funding problems, however, have stalled the electronic system so the state is revising the paper death certificate beginning this month, January 2014, according to North Carolina's health department. … Electronic death registration systems reduce the chance for errors in death-record data being transferred from medical records. The CDC says startup costs for electronic death registration system can be as much as $1 million, a stretch for statistical offices that must fund themselves through the sale of birth and death certificates.

Have your own ideas about improving health data? Send them to me at askantidote [at] gmail.com or via Twitter @wheisel.

Image by Frank de Kleine via Flickr