When an infant or a child needs heart surgery, parents naturally want to make the most informed decision about which hospital is the best choice. According to a review conducted by CNN, however, many might have trouble obtaining this information. Less than half of the hospitals performing heart surgery in pediatric populations disclose death rates, the review showed. The implication of this is significant, considering the fact that 22,000 infants and children undergo heart surgery each year. Only 60 out of 109 hospitals that perform this are transparent about the death rate.
CNN also recently reported that St. Mary’s Medical Center in Florida failed to inform parents that they had little experience performing pediatric heart surgeries. At least eight babies have died since the program started in December 2011. Some parents of the children told CNN that they were lied to about the death rate.
The Society of Thoracic Surgeons is the largest professional heart surgeon organization in the nation. It “considers public reporting an ethical responsibility of the specialty.” When the group asked hospitals to disclose the death rates in pediatric heart surgeries, however, less than one out of three complied. “Patients and their families have the right to know the expected outcomes of operations,” said Dr. Jeffrey Jacobs, a professor of cardiac surgery at Johns Hopkins and chair of the Society of Thoracic Surgeons National Database Work Force. “We anticipate that over time, more and more hospitals will publicly report their outcomes.” Dr. Jacobs is a leading the movement to increase transparency about death rates with children’s heart surgery programs. CNN reports that data from the group shows that there is large range in death rates among children undergoing heart surgery at hospitals, from about 1.4 percent to 12.1 percent.
“I feel like patients don’t know what every physician knows: that there’s a tremendous variation in the quality of medical care out there,” Dr. Martin Makary said to CNN. “Some surgeons have impeccable records, and some have patterns of complications that are outrageous.” Dr. Makary is a professor of surgery at Johns Hopkins University School of Medicine.
Transparency about death rates is important for deciding which hospital is best, but Jacobs tells CNN that reporting this information is an actual measure of quality as well. In April, a study published in April at the American Surgical Association found a lower death rate for adult heart surgery among hospitals who reported their outcomes compared to those who did not.
Among hospitals who do not report death rates, the explanation usually mentions that the death rate may be skewed by the low number of patients undergoing the procedure; one death can cause a large jump in this statistic. “These aren’t perfect measures,” Dr. Charles Fraser, chief of congenital heart surgery at Texas Children’s Hospital in Houston said to CNN. “But at some level you have to say this is the best we have at this point, and you can talk to families and explain what the measures do and don’t provide.” The Texas Children’s Hospital reports its death rates.