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Doctors need to inform patients of risks without fueling fears

July 4, 2010 12:36 am

IGRADUATED from medical school 10 years ago, and since then I have had precious few opportunities to be a patient myself. At 36 years old I have been blessed with good health, and fortunately that has not changed just yet.

So when I recently learned that my wife is pregnant (due in October), I did not anticipate that accompanying her to obstetrical appointments would change my understanding of the doctor-patient relationship in a profound way.

The pregnancy has been healthy and again, I feel very fortunate. We have been diligent--my wife faithfully takes her prenatal vitamins, exercises and watches what she eats, and we established a relationship with an excellent obstetrician right away to monitor the pregnancy.

However, due to the fact that my wife celebrated her 35th birthday last week (Happy birthday, honey!) we were encouraged by our well-meaning obstetrician to see a perinatologist as well.

Perinatologists are also known as maternal-fetal medicine specialists, and are sometimes more aptly referred to as "high-risk obstetricians."

These specialists care for pregnant patients with complicated pregnancies--gestational diabetes, unborn children with congenital defects, and other chronic health problems that women may have prior to pregnancy or may develop during pregnancy.

"But wait " I can hear the average reader's double-take: I thought your wife and the pregnancy were healthy? Why see a high-risk doctor? It turns out that it's all about how to evaluate risk.

FEAR FACTOR

The American College of Obstetrics and Gynecology has long held the position that once a woman passes the magical age of 35, she should be considered of "advanced maternal age" if she chooses to become pregnant. (Good thing ACOG didn't use the terminology "pretty darn old to have a child.")

Most of this arbitrary distinction comes from the risk of having a child with Down syndrome, also known as trisomy 21, in which a child is conceived with three copies of chromosome No. 21 instead of two copies. The extra copy of chromosome 21 causes a number of potential conditions such as heart defects and lower IQ.

At the age of 25, a woman has a 1-in-1,250 chance of having a child with Down syndrome. At 35, that risk rises to 1-in-400, and by 49, that risk escalates to 1 in every 10 children born.

It isn't just about Down syndrome, however. There are other rare chromosomal and congenital defects that are more common among older women (compared with younger women) who choose to become pregnant.

Our first appointment with the perinatologist could have been renamed "Fear Factor--Pregnancy Edition." We first met with genetic counselors. These well-meaning master's-degree-level health professionals have the job of counseling parents about their risk of having a child with some genetic defect.

During this session, I was wearing many hats--doctor, columnist--but most importantly, concerned husband and expecting father.

While the counselors presented chart after chart detailing the myriad genetic defects our child could (might, maybe, perhaps) have, my wife's smile morphed into a furrowed brow filled with tension and concern. We were offered genetic testing--something I will get back to later.

Upon leaving the appointment, I found my role was to help my wife--a teacher--understand how to think about the risk that had just been communicated to us.

We have a 1-in-400 chance of having a baby with Down syndrome. Another way to communicate this risk is to say that for every 400 women who are 35 years old and who become pregnant, 399 of them will have a baby without Down syndrome. Sounds a little different, right?

Statisticians have computed that each of us in America has a 1-in-83 chance of dying in a car accident over the course of a lifetime. Yet we drive every day, and we are not in constant fear of a fatal crash (though a little fear would be nice for those who text-message while driving, no?).

Inherently, we have a great deal of difficulty in understanding risk. Emotions often trump rational analysis, leading to overestimation of risk--which directly leads to unnecessary biopsies, procedures, tests and medications.

COMMUNICATING RISK

It is the role of the physician to do his or her best to communicate risk to a patient. But studies over the years have demonstrated that doctors are not very good at communicating risk, and patients hear different take-home messages even when presented with the same words.

Out of a desire to advise patients of potential risks, physicians often scare patients instead, much as my wife and I were scared in the perinatologist's office.

Since I am an internist, I have a different set of common conditions about which to counsel patients, and I find the need to constantly improve how I communicate risk. Should my 80-year-old patient with a mildly elevated PSA get a prostate biopsy? Should a 35-year-old with chest pain have a cardiac stress test? Should a 40-year-old woman have a mammogram to screen for breast cancer?

I have a newly strengthened appreciation of the need to properly, carefully communicate risk to my patients--and to talk about that risk in the context of the patient's individual value system. Each patient may have a different comfort level when it comes to taking on risk and uncertainty in his or her life.

UNNECESSARY DISCUSSION

In retrospect, we should never have agreed to see the perinatologist.

At the very beginning of the pregnancy, my wife and I thought deeply about our values and decided that we would never consider an elective abortion if our child were found to have any condition, including Down syndrome.

With that upfront decision, there would be no purpose in genetic screening tests, as they would not affect our choice to have our baby. That's why we declined the offer of genetic testing.

INFORMED DECISIONS

Before ordering any test, both doctor and patient ought to think about what will be done with the results--confirming illness, reassuring of health, or raising new and more difficult questions.

There is no perfect test. Any test can have either false positive or false negative results.

In my research for this column, I came across a paper in the Journal of the American Medical Association written by Dr. Rebecca Jean Gordon-Lubitz. I could not have said this any better:

"The goal of risk communication is to help patients make informed decisions about treatment options, medication regimens, and lifestyle changes," Gordon-Lubitz wrote. "To make such communication a useful decision-making aid for the patient is thus an arduous task, but one that can be aided by employing a mix of techniques that accommodate the varying preferences and abilities of different patients."




Dr. Christopher Lillis is an internist with Chancellor Internal Medicine in Fredericksburg. He can be reached at news room@freelancestar.com.




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