Addressing the Dearth of Data on Fetal Death: The Role of Hospitals*

By Kate Greenwood
[Cross-posted at Health Reform Watch]

As I have blogged about before, including last year here, research and public health interventions aimed at preventing stillbirth are stymied by a dearth of data. In an article in this month’s Maternal and Child Health Journal, Erica Lee and colleagues at New York City’s Bureau of Vital Statistics evaluate data collection by New York City hospitals before and after the city’s implementation, in 2011, of the 2003 United States Standard Report of Fetal Death. The Standard Report aids reporters by setting forth “a series of checkboxes for potentially fatal fetal and maternal conditions.” Unfortunately, Lee’s research reveals a persistent and widespread failure to collect basic information when a baby dies in utero.

In New York City, Lee found, “fetal death reports frequently supplied ‘intrauterine fetal demise’, ‘stillbirth’, or other inadequate terms as causes of death.” As Lee points out, words and phrases like this, which merely describe what happened without assigning a cause to it, do not inform public health research. In many cases, of course, what caused a stillbirth truly is unknown. Prior research suggests that this is true 10-40% of the time. In New York City, though, even after the implementation in 2011 of the Standard Report, the percentage of reports with ill-defined causes of fetal death remained troublingly high, at 61%. There was also substantial variation from hospital to hospital. The hospitals that were the best reporters assigned a specific cause 87% of the time, while the worst assigned a specific cause 0% of the time.

As Lee and her colleagues explain,

“public health research aimed at preventing fetal deaths is substantially limited by the data available, particularly poorly-defined and nonspecific causes of fetal death. These data quality concerns have forced researchers to conduct resource intensive cohort studies and/or time consuming chart audits to fully understand the causes behind fetal deaths rather than relying on the more readily-available and routinely collected fetal death records.”

Lee suggests that the variation that exists between hospitals represents an opportunity for improvement, which leads to the question of what policy levers could be used to bring all hospitals up the level of the top performers. 

One policy lever highlighted by Lee is training of physicians and hospital staff. Lee cites a study of an intervention aimed at reducing overuse of “heart disease” as a cause of death. The intervention, which consisted of “a conference call with senior hospital staff, which included medical directors and medical, quality assurance, admitting, and regulatory affairs staff, and an on-site, in-service training of hospital and clerical staff involved in death certification”, led to “immediate and durable” changes in cause-of-death reporting. Another policy lever Lee discusses is adding a new automatic check to New York City’s electronic reporting system, which would prompt reporters who entered an ill-defined cause of fetal death to reconsider their response. Other policy levers–from carrots like increased funding to support hospital reporting to sticks like conditions on existing funding and increased enforcement–might also be deployed to boost hospitals’ performance. I welcome your thoughts on which of these you think is most promising.

Lee notes that the cost of adding an automatic check to New York City’s electronic reporting system would be high. Implementing enhanced training or other policy levers would also come at a cost of both money and time. There is a cost to our persistent failure to focus on and, to the extent possible, prevent stillbirth too, though. There is an emotional toll, which is incalculable. There is also the dollar and cents cost of, among other things, medical care, funeral services, and grieving parents’ loss of productivity. In a recent article in the British Journal of Gynecology, Vicki Flenady and colleagues write that “[i]n the USA perinatal and child death is conservatively estimated to cost about $1.5 billion per year with the global costs likely to far exceed this figure.” The time has come for hospitals to report each stillborn baby accurately and completely, so that researchers and public health practitioners have the data they need to do their jobs.

* I thank Catherine Finizio, the Administrator of Seton Hall Law’s Center for Health & Pharmaceutical Law & Policy, for keeping me focused on this important issue. (My prior posts are here, here, here, here, and here). Cathy’s grandson, Colin Joseph Mahoney, was stillborn at 39 weeks gestation on November 10, 2008.

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