Writing About Uncertainty — & Medicine That Ignores It

At The Open Notebook, NY Times Magazine staff writer Susan Dominus talks about her fascinating feature about twins who are conjoined at the head and share neural bridging that seems to entwine their consciousnesses.Like the feature, the interview has a lot of interesting material about the seemingly shifting line separating the girls experiences and self conceptions. It makes a wonderful companion to the story. It’s also a valuable brief on how to report and handle a story like this, in which all the science involved is rudimentary and speculative.

Were there differences of opinion about the significance of what you were observing? Did you have to adopt a point of view?

Oh, that was fascinating. Some scientists I spoke to said, “Sure, of course it makes sense that if they have any overlap of thalamic neural material, then they would share each other’s sensations—what could be more obvious than that?” Others were absolutely floored by these details. So I would speak to one neuroscientist and say, “Well, Neuroscientist X told me he thinks what’s happening here is this,” and the second neuroscientist I was speaking to would invariably say, “What did he think? That’s ridiculous!” Then he would have his own theory. I would take then take that notion to a third neuroscientist, who would say, “What? That’s absurd!” It was really fascinating because they’re clearly in such uncharted territory, and it seems to trigger very intense emotions.

__You seem to have made that mystery and disagreement a theme of the story, rather than a reporting obstacle to be overcome.
__

I’m glad you felt that way. I often say that whenever you’re writing a story about science, and particularly about the brain, there comes a point where you have to write a paragraph that says, “Of course, scientists don’t really understand how fill-in-the-blank really works.” I tried to hover above kind of a hard landing and just point out the wonder of the circumstances of the girls.

I like this language about hovering over a hard landing–resisting the pressure to treat science as a set of settled questions or facts that are either firm or discarded. Credit the Times Magazine for not forcing that sort of agenda on the story. Credit Susan Dominus with handling the story's many, sometimes strange strands with nuance.

I found one passage particularly moving both for its sense of tragedy and as a reminder of the limits of even our most powerful medical technologies. Dominus has been pondering how the twins will manage to live both individual and separate lives, and whether they will ever want to be physically separated in order to be separated in some more essential way. There is little precedence for such decisions. She recalls one of the few:

Only one set of conjoined twins has ever made the adult choice to be separated, according to “One of Us,” a book by Alice Dreger that traces the history of cultural responses to conjoined twins. Ladan and Laleh Bijani were craniopagus twins who grew up in Iran. When they were 29, they were so desperate to live apart that they decided to take the 50-50 odds that they were given of surviving a separation. In 2003, in the hands of highly regarded surgeons in Singapore, they died after surgery. Despite the countless high-tech brain images they had produced, the surgeons were caught unaware by a major vein the women shared. They thought they had seen inside; but what they learned, tragically, was how little they knew about the union after all.

It's good to get these reminders that our technology of lacks the great power we tend to see in it. This story of the Bijanis, in which we think we can see and then find we cannot, reminded me of one I ran across when I was doing a Times Magazine feature about the decline of autopsies. About 60 years ago, US hospitals autopsied about half of all hospital deaths, and they constantly revealed causes of death that had been missed by the treating doctors. Now we autopsy fewer than 5% of hospital deaths; we bury our mistakes. (We know this because numerous studies have shown that in 25 to 40 percent of cases in which an autopsy is done, it reveals an undiagnosed cause of death.) As a result, we often don't really know why people are dying -- but we think we do. Sometimes we're mistaken because we've so much faith in imaging technologies in particular.

Perhaps the most troubling reason for the decline of the autopsy is the overconfidence that doctors -- and patients -- have in M.R.I.'s and other high-tech diagnostic technologies. Bill Pellan of the Pinellas County medical examiner's office says: ''We get this all the time. The doctor will get our report and call and say: 'But there can't be a lacerated aorta. We did a whole set of scans.' We have to remind him we held the heart in our hands.''

For more on autopsies, see Buried Answers. And by all means, check out the Dominus's strangely wonderful but troubling story about the twins, Could Conjoined Twins Share a Mind?, as well as her interview at The Open Notebook, which also has interviews with Carl Zimmer, Robin Henig, and others.

Image: Phillip Toledano for The New York Times