I do not have a son named Joshua.
When President Obama said, "I have talked to enough doctors to know that defensive medicine may be contributing to unnecessary costs" in his speech last week, I was flooded with emotions. It reminded me of my family's own experience with "defensive medicine" and a completely unnecessary and risky procedure that is routinely recommended by obstetricians -amniocentesis.
My wife was thirty-nine years old and pregnant with what we thought was a little boy. We were going to name him Joshua. Our obstetrician suggested that because of my wife's age, we should consider doing "genetic testing."
Without hesitation we told her we did not want to do this because
we would not use the information. For us, terminating the pregnancy was simply not an option.
Undeterred, she continued, saying when the risk of an adverse pregnancy was greater than the risk of testing, she recommended people consider genetic testing. The risk of testing she was referring to is the risk that you lose the pregnancy. Experts estimate that between 1 in 200 and 1 in 400 women will spontaneously abort as a result of having an amniocenteses. These are women who would have delivered healthy babies in most cases but instead have miscarriages. So the risk of the procedure is not insignificant.
Since we were not willing to do an amniocentesis, she suggested we might want to do a test referred to as a "triple screen" test. In this case, the pregnant woman's blood is tested, and from these tests, doctors are able to more accurately estimate the chances of having a baby with Down Syndrome. (
Click here for more information on the triple screen and genetic testing for Down Syndrome.) We saw no harm in this simple blood test and consented. When the results came back, we learned that according to the triple screen, the chances of us having a child with Down Syndrome were something like 1 in 1600. This confirmed our earlier decision not to do an amniocentesis.
It did not deter our obstetrician though. She persisted in recommending we at least discuss the procedure with another doctor who would have actually performed the test. Slightly confused, we trusted our obstetrician and were lead to the other doctor's office. When I spoke with this doctor I explained we had the results of the "triple screen" and were confident there was no need to do the amniocentesis.
"The triple screen is not a diagnostic test," she protested.
"Are you saying that the triple screen is not valid?" I asked.
Again she asserted the screen was not a diagnostic test. At this point, Su and I were feeling confused. I explained to the doctor I had a degree in applied mathematics and in my profession, I worked with risk and uncertainty all the time.
"Doctor, we can make a good decision about this if you will just give me the data," I assured her.
I think the assertion that I understood mathematics and statistics made her very uncomfortable. She knew I wasn't going to just cave to her white coat. She suggested we talk to the genetic counselors. We agreed and were sent to another room where two young women joined us and explained everything about genetic testing.
Suddenly I had a horrible thought. Had the doctor seen something on the ultrasound that caused her to think our baby had Down Syndrome? Well yes, the genetic counselors said. She had noticed a "marker." Markers are associated with Down Syndrome, the genetic counselors explained. Of course, the counselors went on, many perfectly healthy babies without Down Syndrome also had these markers.
"How will this change the probability that my baby will be born with Down Syndrome?" I asked. "We don't know," said the genetic counselors. After more frustrating, unanswered questions, the genetic counselors were still unable to convince us to consent to testing. So they asked us to sign a release saying we had declined on the procedures. This whole unpleasant experience left Su and me feeling frustrated and angry.
There is a lot of really sloppy thinking going on with regard to this test. Amazingly, the American College of Obstetrics and Gynecology began recommending that all women, regardless of age, be offered an amniocentesis in 2007. This is a really bad idea.
An amniocentesis does not guarantee you a healthy baby. It just gives you a piece of information you are going to get anyway in about five months. If you intend to act on the information however, it may be worth considering the test. But if you are not going to terminate the pregnancy should you learn your baby has the extra chromosome that causes Down Syndrome, it is irresponsible to expose the fetus to such risk.
When our obstetrician said she recommended the procedure when the risk of testing was less than the risk of an adverse pregnancy, she exercised faulty logic. Down Syndrome is a risk you take when you choose to get pregnant. Having a miscarriage as a result of the procedure is a new and additional risk that you assume when you consent to the test. Shockingly, the genetic counselors told us that some people who had no intention of terminating the pregnancy regardless of the result wanted to take the test just to know their baby was healthy. This is really bad risk management.
I do not have a son named Joshua. This is because when my wife gave birth, he was a she and we named her Hannah. She is six years old now, in the first grade, and perfectly healthy. She plays soccer, dances ballet, and sings the most beautiful rendition of "Jesus Loves Me" you ever heard. I am her dad and I protect her. I make sure she buckles herself into her car seat and wears a helmet when she rides her bike. And I am so happy that six years ago I did not let some lunatic doctor stick a needle in my wife's belly just to see if my child would be born mentally retarded. Sure, it was only a 1 in 300 chance that I would have lost her as a result, but she is exposed to far less risk each time she gets in a car or gets on her bicycle, and I would not think of letting her ride a bike without a helmet or not buckle her in when she gets in the car.
Decision-Making Best Practice #19: Obtaining additional information can expose you to new risks and costs. If you are not going to use the information, do not expose yourself to the additional risks.
Labels: amniocentesis, data, defensive medicine, jobs, risk, risk management
It takes about two hours to get to Sweet Briar from my home in Richmond. When I finally arrived, I was treated to a beautiful tree-lined driveway leading to an impressive campus. You cannot help noticing the large pink flags that hang along the driveway featuring one-word inspirational messages. My favorite was the one that said, "Question."
It takes about two hours to get to Sweet Briar from my home in Richmond. When I finally arrived, I was treated to a beautiful tree-lined driveway leading to an impressive campus. You cannot help noticing the large pink flags that hang along the driveway featuring one-word inspirational messages. My favorite was the one that said, "Question."
complex, once the rules have been created, following them should require no specialized expertise. Because the rules are clearly defined, anyone following the rules will make the same choices as Professor Scott will when he implements the methods.
complex, once the rules have been created, following them should require no specialized expertise. Because the rules are clearly defined, anyone following the rules will make the same choices as Professor Scott will when he implements the methods.
