Not Discussing Down Syndrome Complications Is Unethical

There’s definitely a wrong way to give an unexpected medical diagnosis.

In 2000 I was diagnosed with a benign brain tumor, a meningioma. I knew that the tumor would need to be removed, but I was shocked when the ophthalmologist declared: “I’m so glad that I’m not the neurosurgeon who’s going to operate. It’ll be tough; that sucker is sitting in the middle of your brain in a lake of blood.”

But while it’s easy to determine the wrong way for a doctor to give unexpected bad news, it’s surprisingly difficult to figure out the right way to give a specific diagnosis to a specific person. That’s what I thought when I read the account of the mother who was angry at her doctor for the way he handled her baby’s diagnosis of Down Syndrome.

Courtney Baker wrote a letter to the doctor who told her about her daughter Emersyn Faith’s diagnosis:

Those are powerful words, but what if the opposite had occurred? What if a patient receiving the prenatal diagnosis of Down’s Syndrome was not counseled about her child’s prognosis and told instead that her child would be perfect? That’s unethical because every doctor has an obligation to tell a patient the truth about a diagnosis. No one can make an informed decision about medical treatment (or forgoing treatment) unless they have accurate information, yet different patients may receive the same information very differently.

One woman who receives a diagnosis of advanced metastatic breast cancer with a poor prognosis may be grateful to hear about the relatively low chances that a grueling treatment regimen will affect the outcome; it allows her to make an informed decision about whether to accept the treatment. Another woman, receiving the exact same diagnosis in the exact same way, may be very angry, believing that the doctor is stealing her hope.

Similarly, one woman who receives the unexpected diagnosis that her unborn child has Down Syndrome might welcome a detailed discussion of the child’s potential. She needs that information to decide to continue or terminate the pregnancy. Another woman, like Baker, may resent being counseled about terminating her pregnancy, eager to love and care for a child with a disability.

Moreover, the way that a patient responds to an unexpected medical diagnosis depends in large part on the patient’s experience and values. The diagnosis of advanced metastatic breast cancer is going to mean something different to a woman who watched her mother die in agony from the same disease than it means to a woman whose mother responded well to aggressive chemotherapy and radiation.

The patient’s religious beliefs can deeply affect the way he or she receives the diagnosis. One person may believe that unborn children are sacred. Another may feel that pregnancy termination is an important right and valuable option.

Could Baker’s doctor have been more supportive? I can’t say because I haven’t heard his views, and patient confidentiality prevents him from sharing them. But I can say that good medical care always requires providing complete and accurate information—not merely the information that a patient wishes to hear.