Words Matter, from Clinical Documentation to Case Reports

Maksim Kabakou / SHUTTERSTOCK.COM

Every year, my program goes through a ritual—I scrub my face, put on a smile and meet hordes of medical residents from across the country. And every year, I do my best to convince all of them that Baltimore would be an amazing place for them to complete their medical subspecialty training in rheumatology. Now that the ritual is over, I have a confession to make: In addition to questions about training and research, I should really be asking trainees one question that is even more relevant to their experience as rheumatology fellows: How many words per minute do you type?

In the EPIC epoch, the mere act of documentation has become an all-consuming enterprise that takes us away from our patients and our lives. A recent article indicates that for every minute a provider spends with a patient, that provider will spend two minutes documenting the point of contact.¹ Thus, every morning, when I sit in front of my computer, my eyes naturally drift to the number of unsigned notes I have, like some people’s eyes drift to the sports scores in the newspaper. As I write, I am under threat of suspension by my institution for spending too much time taking care of patients and not enough time documenting that care.

Part of the problem is the care that we provide. I have yet to see a smart phrase that allows me to insert a block of text that accurately describes a patient with eosinophilic granulomatosis with polyangiitis, and I am even more certain that my patient cannot be reduced to a Likert scale. In rheumatology, more than in any other field, each patient is unique, and there is no easy way to avoid a longhand description of the trials and tribulations that brought that patient to today.

My trainees know that I insist on longhand descriptions that are written in English, and not text-message shorthand. Sentences should begin with a capital letter and end with a period. Avoid gratuitous abbreviations and medical slang. One of my fellows and I have a running joke about the use of parallel structure, based on a comment I made about one of his notes during training. Writing is a means of crystalizing our thoughts about a patient. Putting fingers to keyboard forces us to deconstruct our intuitions regarding the patient’s illness and to reexamine the faulty inferences and biases that may stand between us and the truth. Writing well is how we communicate our expertise and ensure that our thoughts do not get lost.

The same applies to scientific writing. When a clinic note morphs into a case report, it is the care with which we write that determines the difference between publish and perish. How we structure our thoughts and ideas, even word choice, may help sway the reader (or peer reviewer) to our point of view.

Language is how we crystalize the world around us. We cannot hope to solve a problem we cannot name. The suspicion that some words are less welcome than others could lead to self-censorship, subtly guiding investigators toward proposals with fewer minefields.

George Carlin & 7 Dirty Words

George Carlin knew about the importance of word choice. Carlin was the sort of comedian you might watch with your friends—but not your mother. He knew which words would make you uncomfortable and played with that discomfort to comedic effect. In one famous monologue, he said, “there are a lot of words you can say whenever you like … . No one has ever gone to jail for screaming ‘topography!’ But there are some words that you can go to jail for. There are some words that we have decided that we will not say all the time.”²

George Carlin’s Seven Dirty Words monologue might have faded away had it not been for WBAI, a radio station in New York that played a recording of it. The Federal Communications Commission (FCC) promptly received a complaint from an irate father, who likely noticed that the act expanded his son’s vocabulary in unexpected (and unappreciated) ways. The FCC, in turn, issued a letter of reprimand. The back-and-forth between the radio station and the government eventually led to the Supreme Court of the United States.

The question posed to the Supreme Court was an interesting one: Does the First Amendment to the U.S. Constitution, which prohibits the government from abridging the freedom of speech, also protect George Carlin’s enthusiastic exploration of the outer limits of the language?

In Federal Communications Commission v. Pacifica Foundation, the Supreme Court found that the First Amendment guarantee of free speech did not mean that radio stations could broadcast whatever they wanted, whenever they wanted. The Supreme Court ruled that the government had a compelling interest in shielding children from offensive material and in preventing unwanted speech from entering the home, which took precedence.²

Although George Carlin passed away in 2008, his legacy lives on through both YouTube clips (in which you can—on your own—find recordings of his “Seven Dirty Words” performance) and law school lectures, which reference this landmark First Amendment case. Even if you were not aware of George Carlin, you are aware of his legacy. Every loud bleep! and obscured image on network television is an homage to his impact on our daily lives.

7 Dirty Words, Scientific Edition

Now, science may have received its own list of seven dirty words. In December 2017, The Washington Post published an article alleging the Centers for Disease Control & Prevention (CDC) was given a list of words it was instructed to avoid in documents related to the next year’s budget. The seven terms are: vulnerable, entitlement, diversity, transgender, fetus, evidence-based and science-based. According to the report, Allison Kelly, a leader of the CDC’s Office of Financial Services, indicated that budget drafts that had included the words vulnerable, entitlement and diversity had already been returned for correction. Instead of “evidence-based,” officials at the CDC were encouraged to use such phrases as “[the] CDC bases its recommendations on science in consideration with community standards and wishes.”³

The article was published on a Friday. By Saturday, people were already responding to the report. Rush Holt, CEO of the American Association for the Advancement of Science, commented, “Among the words forbidden to be used in CDC budget documents are ‘evidence-based’ and ‘science-based.’ I suppose one must not think of those things either. Here’s a word that’s still allowed: ridiculous.”⁴

The Washington Post and other media outlets blandly noted that entire divisions within the CDC perform research that uses these words. It was not immediately clear, for example, how researchers could request additional funding for research on the Zika virus if they could not mention the impact of a maternal infection on the fetus. The most entertaining response came from Chuck Todd on NBC’s Meet the Press, who, riffing on George Carlin’s act, merely made a statement incorporating all seven words without further comment.⁵

How the CDC views language & words has the potential to affect all of us, both as rheumatologists & as beneficiaries of the CDC’s research in other fields.

Matt Lloyd, spokesperson for the Department of Health and Human Services, disagreed with the report. In a statement to CNN, he noted, “the assertion that HHS has ‘banned words’ is a complete mischaracterization of discussions regarding the budget formulation process. HHS will continue to use the best scientific evidence available to improve the health of all Americans. HHS also strongly encourages the use of outcome and evidence data in program evaluations and budget decisions.”⁶

Brenda Fitzgerald, MD, director of the CDC, took to Twitter to state, “You may be understandably concerned about recent media reports alleging that [the] CDC is banned from using certain words in budget documents. I want to assure you that [the] CDC remains committed to our public health mission as a science and evidence-based institution.” After quoting Matt Lloyd’s statement, she went on to state, “I want to assure you there are no banned words at the CDC. We will continue to talk about all our important public health programs.”⁷

In Fiscal Year 2017, the CDC’s budget was $7.2 billion, $1.12 billion of which was dedicated to chronic disease prevention and health promotion.⁸ One of the chronic diseases the CDC has focused on is arthritis. The CDC collects data on the prevalence of arthritis in the U.S., and how arthritis affects patients’ quality of life. The CDC also supports efforts by state and national programs, such as the Osteoarthritis Action Alliance, to educate patients on the pathogenesis and prevention of osteoarthritis.⁹ How the CDC views language and words has the potential to affect all of us, both as rheumatologists and as beneficiaries of the CDC’s research in other fields.

At the end of the day, we may never know exactly what happened at this meeting. The Washington Post story was based on anonymous sources, and most of the subsequent news reports simply quoted The Washington Post. Despite this, social media has lost no time dissecting official statements from the CDC and the Department of Health and Human Services, trying to parse the difference between what has and has not been said. It seems possible that some of this has to do with a variation of grantsmanship—the words may not be forbidden, but it may have been noticed that some words receive a warmer reception than others. A well-meaning official may have just been trying to ensure that budget requests sailed through the approval process. Even this is a problem, however.

Language is how we crystalize the world around us. We cannot hope to solve a problem we cannot name. The suspicion that some words are less welcome than others could lead to self-censorship, subtly guiding investigators toward proposals with fewer minefields.

In July, a new cohort of trainees will descend on my institution. As in past years, I am sure they will roll their eyes at me as I talk about parallel structure and the Oxford comma. In addition to making unwanted comments about grammar and style, I also hope to communicate to them that words matter. In clinical training, we are taught to make “evidence-based” recommendations to patients; that’s not exactly the same thing as making a recommendation that is “consistent with community standards.” The free exchange of ideas—and of words—is intrinsic to how science operates. More importantly, words are how we inspire, we persuade and we excite.

Philip Seo, MD, MHS, is an associate professor of medicine at the Johns Hopkins University School of Medicine, Baltimore. He is director of both the Johns Hopkins Vasculitis Center and the Johns Hopkins Rheumatology Fellowship Program.

References

1. Sinksy C, Colligan L, Li L, et al. Allocation of physician time in ambulatory practice: A time and motion study in 4 specialties. Ann Intern Med. 2016 Dec 6;165(11):753–760.
2. FCC v. Pacifica Foundation 1978, United States Supreme Court, No. 77-528. Decided 1978 Jul 3.
3. Sun LH, Eilperin J. CDC gets list of forbidden words: Fetus, transgender, diversity. The Washington Post. 2017 Dec 15..
4. Mershon E. After report on CDC’s forbidden words policy draws outrage, HHS pushes back. STAT. 2017 Dec 16.
5. Todd C. Seven words banned at the CDC, with apologies to George Carlin. Meet the Press. 2017 Dec 17.
6. Ravitz J. Word ban at CDC includes ‘vulnerable,’ ‘fetus,’ ‘transgender.’ CNN. 2017 Dec 18.
7. @CDCDirector. You may be understandably concerned about recent media reports alleging that CDC is banned from using certain words in budget documents. Twitter. 2017 Dec 17.
8. CDC’s funding: CDC’s funding in fiscal year (FY) 2017: $7.2 billion. Centers for Disease Control & Prevention. 2017 Jul 28 (last update).
9. Arthritis-related statistics. Centers for Disease Control & Prevention. 2017 Mar 6 (last update).