usage

Updated Guidance on Reporting Race and Ethnicity: Let’s Start With the Why

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Kim Penelton Campbell, BS, JAMA Network

I have used many adjectives to describe myself, but I’ve never referred to myself as other. When teachers called my name during morning attendance, I responded by saying “Here.” I never said, “Invisible.”

In medical literature, the failure to fairly and respectfully recognize and include individuals of all races and ethnicities can severely adversely affect patients’ lives and the quality of care they receive. It can misinform clinicians. It can compromise the credibility of a journal.

This means that race and ethnicity data should be reported in a way that encourages fairness, equity, consistency, and clarity in medical and science journals.1

Changing the b in Black and the w in White to uppercase lettering when describing race is not about mere political correctness—these changes are part of a conscientious movement toward equitable delivery of health care services to all people.

The objective of this post is to emphasize that updated guidance about the reporting of race and ethnicity is important, not because the AMA Manual of Style says so, but because inattentiveness to these changes can contribute to unconscious bias and ultimately affect how patients are treated or unintentionally mistreated.

Bias, when unintentional, is not mitigated—it remains bias all the same. Unintentional bias can occur simply because the writer or editor is removed from the patient’s life experience. When the writer or editor is unaware, they may not recognize how insensitive wording can affect the reader.

Example: “Adherence to the prescribed medication was higher among White patients than among Blacks.”

Consequence: Does this mean that if you are White you are a patient but if you are Black you are nothing? What is a Black?

When a person is called a Black instead of a Black patient or a patient who is Black, the wording detracts from that person’s humanity.

Likewise, use of lowercase lettering for Black and White, as well as referring to people as minorities instead of as members of a racial or ethnic minority group, also diminishes their humanity. Stating race or ethnicity in noun form can be interpreted pejoratively and is akin to labeling patients by their disease (eg, the blind, schizophrenics, epileptics) instead of putting the individual first (eg, a person with schizophrenia).2 Other things that can be interpreted pejoratively and should be avoided are using the term mixed race, which can carry negative connotations, instead of multiracial or multiethnic, merging race and ethnicity with a virgule (ie, race/ethnicity) rather than recognizing the numerous subcategories within race and ethnicity with the term race and ethnicity, and using abbreviations for racial and ethnic terms. Although the writer or manuscript editor may not have intended to negatively portray a group of people, the potential effect on readers remains unchanged.

  • To potential authors, the absence of a single word can indicate that a journal is insensitive to the health care needs of a population of patients.
  • To clinicians with the same racial or ethnic background as the one negatively represented, this can promote the inference that the journal has no diversity on its editorial board or staff.
  • To a practicing physician, this language can translate to offensive or insensitive communication when speaking with a patient or a patient’s family member.
  • To a patient, this wording can indicate that the medical community views individuals from their racial or ethnic group as nonpersons—unseen, unconsidered, and uncared for.
  • For all of these individuals, this can deepen a sense of mistrust.

Language that excludes a racial or ethnic group can subtly influence a medical trainee to “unsee” the humanity in people who are from a different background. If their research and educational sources are written or edited without intercultural competence, the medical trainee may unintentionally miscommunicate or make incorrect assumptions about patients from other backgrounds. This breach can interfere with a clinician’s understanding of the patient and, in response, impede the patient’s trust in the clinician.

Among some patients from communities that have been medically underserved or ignored, information about medical mistreatment can transcend generations. Past miscommunication can lead to mistrust, which can then lead to fear.

A family may never forget that Grandma never came home from the hospital and that no clinician took the time to explain why. Although this family was made to feel invisible because of miscommunication, it is quite possible that the clinician intended no disrespect and had no knowledge of how the family was affected. A patient with a historic burden of oppression can potentially interpret disrespectful communication as an initial step down the road to medical abuse.

My godfather once expressed such fear. He was Black, the clinicians were White, and he had grown up in Mississippi during the 1940s. Although I asked, he refused to ever repeat details of what was said by these physicians many years ago. But decades later, when I was a teenager and a novice driver, my godmother phoned and urgently asked that I come to their home immediately to rush him to our local VA hospital.

On my arrival, she exclaimed, “I think he had a heart attack while gardening in the back yard!” I said, “I’ll call 911. The ambulance will get him there faster.” Then, she stopped me. She pleaded that I drive him there myself. As I rushed to his aid, she continued by telling me that he would die of fear if an ambulance came to their home. She told me that I must speak for him when we arrived, remain by his side, and do everything in my power to keep him calm.

He cried like a baby during the entire ride. He was afraid. He was humiliated about expressing fear in my presence. I did not know what to say. I just kept driving. My heart was broken.

This brief story is an example of deep-seated fear that some Black people experience in a health care setting, a fear that can only begin to be abated with a conscientious effort to ensure that language humanizes Black patients and patients from all racial and ethnic backgrounds.

How does one address suboptimal reporting on race and ethnicity?

  • First, follow the guidelines.
  • Second, write and edit with a raised antenna. Look for what is unsaid in addition to what is written on the page.
  • Try to interpret as if you are a person from a racial or ethnic group unlike your own. Think about how you would you feel as the subject or nonsubject of the article.
  • Consider how wording can be misinterpreted.
  • Consider how inattentiveness to detail can affect the health, safety, or life of someone who is misrepresented.
  • Edit responsibly, but without fear of respectfully questioning the author.

Remember: no one is invisible, and no one is other.

“Not everything that is faced can be changed, but nothing can be changed unless it is faced.”3

James Baldwin

References

  1. Flanagin A, Frey T, Christiansen SL; AMA Manual of Style Committee. Updated guidance on the reporting of race and ethnicity in medical science journals. JAMA. 2021;326(7):621-627. doi:10.1001/jama.2021.13304
  2. Christiansen SL, Iverson C, Flanagin A, et al, eds. Correct and preferred usage. In: AMA Manual of Style: a Guide for Authors and Editors. 11th ed. Oxford University Press; 2020:547-548.
  3. Baldwin J. As much truth as one can bear. New York Times. January 14, 1962: Book review 1, 38. https://www.nytimes.com/1962/01/14/archives/as-much-truth-as-one-can-bear-to-speak-out-about-the-world-as-it-is.html

Exhibit A

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There are times when authors question whether they really need copyediting; occasionally, when edits are especially light and authorial moods particularly dark, I even wonder if the idea of skipping it might even be right. But I am never swayed long, because to copyeditors, it is usually clear how tricky English can be, even in its smallest and seemingly simple parts.

Consider exhibit A: a.

English offers 2 indefinite articles, a and an, and the 11th edition of the AMA Manual of Style includes a simple-but-not-easy rule of when to use them: the a goes before consonant sounds and the an before vowel sounds. The hard part is that the sounds, not the written letters, are the deciding factor.

Because English is nonphonetic, words that start with written consonants (such as h) might begin with a vowel sound (as with hour), and those starting with a vowel may be said as an initial consonant sound (as with one). The only way to know the correct article to use is to know how each word is said aloud.

Medical writing further complicates this with prodigious abbreviations. Exactly half of the letters in the English alphabet, including 8 consonants, are said with initial vowel sounds; for example, an N is pronounced “en” and thus must follow an an when it occurs in acronyms such as NSAID. (The other 7 such consonants are F, H, L, M, R, S, and X.)

Making things even worse, acronyms that are pronounced as words (eg, LASIK) must be matched with the indefinite article that goes with their initial sound (in LASIK, “la-,” which means an a should be used), not the sound that matches the spoken letter (the “el” sound of L, which would go with an an). This means it is essential to know which acronym is said as a word and which as a mere cluster of letters.

It is a relief that nearly all of the letter names that start with consonant sounds (B, C, D, G, J, K, P, Q, T, W, Y, and Z) are for actual consonants, making the a their default article—except that, of course, Y is a consonant (said “ya”) and a vowel (“ee”) with a rather inexplicable spoken name (“why”), and…. well, you get the picture. The complexity never ceases.

Anyone can get this stuff wrong, even native English speakers. For authors using English as a foreign language, including those who largely write in rather than speak the language (and therefore do not sound it out much) and those whose native languages do not include indefinite articles (eg, Japanese, Hindi, Polish, many more)—this might be pretty hard to manage. For everyone, there are copyeditors. We hope to handle this and all the rules in our 1200-page style manual, from a to z.–M. Sophia Newman

Welcome the 11th Edition of the AMA Manual of Style!

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We are pleased to announce the 11th edition of the AMA Manual of Style, now live at https://www.amamanualofstyle.com/ and shipping in hardcover in a few days.

The manual has been thoroughly updated, including comprehensive guidance on reference citations (including how to cite journal articles, books, reports, websites, databases, social media, and more), an expanded chapter on data display (for the first time in full color), a completely up-to-date chapter on ethical and legal issues (covering everything from authorship and open access to corrections and intellectual property), and updated guidance on usage (from patient-first language and terms to avoid to preferred spelling and standards for sociodemographic descriptors).

The section on nomenclature has undergone thorough review and updating, covering many topics from genetics and organisms to drugs and radiology.

The statistics and study design chapter has been extensively expanded, with more examples of usage and terms that link to a related glossary.

Chapters on grammar, punctuation, abbreviations, capitalization, manuscript preparation, and editing feature refreshed examples and new entries (such as allowance of the “singular they”).

The nearly 1200-page book is enriched by a variety of online features. For example, regular updates to address changes in style or policies will be featured in the Updates section. Any corrections will be made online so that you are always looking at the latest guidelines as you use the manual.

New quizzes will be posted to help new or continuing users learn to master the finer points of AMA style, and the units of measure calculator offers easy conversions between the SI system and conventional units, as well as the metric system.

We welcome questions and comments on the manual: write to stylemanual@jamanetwork.org or find us on Twitter (@AMAManual). We look forward to engaging with you. –Stacy Christiansen, for the AMA Manual of Style Committee

A Blueprint for Science Editing

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As a high school student, I stumbled across A Blueprint for Teen-Age Living in a recessed shelf of the library. The book was older than I was with a spine unbroken. Despite these red flags, I believed this William C. Menninger author might have some wisdom for the ages.

The breezy illustrations failed to track against the daily dramas unfolding around me in those years, and its advice did not seem to be applicable to peers. No one else was consulting a book on how to behave. One of the 7 signs of maturity was the ability “to deal constructively with reality.” Real life never arranges itself as in a guide to behavior, so to deal with reality, I began to disregard the Blueprint advice. Let’s just say that A Blueprint did not open any doors.

Happily, as a manuscript editor, I have access to guidebooks that not only open doors but also resolve questions. With the impending arrival of the AMA Manual of Style 11th edition comes the opportunity to take a brief peek at the first edition, which is of about the same vintage as that guide for teenagers.

A reasonable facsimile.

The typeface on the cover is, like the illustrations in A Blueprint, deceptively breezy. The book gets down to business. Even a quick look shows that the book arranged itself according to the real life of an editor. Written by director John H. Talbott, MD, for the Scientific Publications Division, this 70-page Style Book was produced in 1962 for an in-house audience. Stapled with a green cover, it has the look and weight of a fundraising cookbook from church. The Foreword (spelled “Foreward,” a potential mash-up of “foreword” and “forward”) indicates that numerous blank spaces appear on pages for additions the user may wish to enter. How thoughtful, but the version in hand must be a facsimile edition because all pages are jam-packed with scant space for additions.

The Style Book consists of 25 sections, mostly about the conventions of punctuation, with excursions into italics, laboratory values presented as cc instead of mL, drug names, and proofreader’s marks (perhaps the most constant of all sections). The Style Book shouts. CORRECT USAGE. INTERROGATION MARKS. FOOTNOTES. What became of the cover’s breeziness? The CORRECT USAGE section 9 lists “lipid: noun” and “lipoid: adjective,” and “mucous: adjective” and “mucus: noun.” These distinctions have evaporated over the years. In contrast, Section 9.16 advises for “over”: “‘more than’ preferred when numbers are used,” which appears to be an eternal directive.

The current manual directs us not to use a colon if a sentence is continuous without it. No such ruling appears in the first edition, which mentions colons as an indication of an explanation or enumeration to follow, as an introduction to a formal direct quotation, or to separate numbers in time of day, biblical references, and parts of numeric ratios. The book does use colons even when the sentence would be continuous without. In at least one place, the verb “are” is followed by a colon then its predicate nominative string.

One change that won’t surprise those of us in house is the guidance about numbers. NUMBERS 16.00 indicates “In the text all numbers from one through ten should be spelled out.” Current style is to use numbers, which still surprises many authors who return proofs with the instruction to spell out numbers. Another minor change is in capitalization after a colon. CAPITALIZATION 4.00 directs that the first word after a colon in a reference gets capitalized. Now the opposite is true.

In current Common Usage, “utilized” is not preferred because “use” is concise. The Style Book has plentiful examples of “used,” but “utilized “makes at least 1 surreptitious appearance.

It may sound odd to personify a book, but the Style Book has become surer of itself in the last 58 years. I believe it must have gone through the 7 signs of maturity. The original Foreword claims that “Few of the rules contained in this book are inviolable” and that the book “is not to be static,” modest claims presented with a certain authority, not to mention an admirable realism. The current Foreword focuses on the need for communicative writing and the manual’s standing as a more extensive and comprehensive manual than earlier editions.

The upcoming Foreword characterizes the manual as indispensable for medical journalism and communication, which embodies being “not static.” The new manual is 17 times the size of the 1962 edition, whose Foreword also presented the optimistic expectation of a new edition every year. Unlike A Blueprint, the community of users was accurately assessed. I imagine that even in 1962, people who consulted the Style Book felt like part of a community centered around this makeshift blueprint for science editing. Now the community of users extends around the globe. The AMA Manual of Style also opens doors, not just for editors but also for conversations between editors and authors.–Timothy Gray

How Many Is They?

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Since I’ve been a manuscript editor, JAMA Network journals have published a few articles about health care for transgender patients. I’ve had the good luck to edit a few—they are always interesting—but this week, I realized that there is a grammatical issue in editing these articles that I have never heard fully addressed.

The issue is not what pronouns to use for transgender individuals—that question is well-known. Because the English language uses gendered pronouns, people who change their gender expression or whose gender isn’t accurately defined by labels are faced with several choices: should they go by she, he, a singular they, or a neologism, such as xe?

The news media has addressed this, including The New York Times articles in 2016 and 2017, with another written by transgender English professor Jennifer Finney Boylan in 2018. These articles often make the same points: that people can get confused by this transformation of language, but that people who want to use pronouns that reflect a gender different from their assigned sex should have their wishes respected. This squares with the approach used in JAMA Network journals.

But it also raises a question rarely addressed: what about verb conjugation? In the present tense, English applies a letter s to the third-person singular (he, she, or it runs) but not to the first-person singular, first-person plural, second-person singular, and third-person plural (I, we, you, and they run). So, if an article uses a singular they, should it be conjugated like the third-person plural (run) or like the third-person singular (runs)?

While editing, I have realized that the default method of using the singular they along with someone’s name (or a descriptor, such as the patient) involves flip-flopping between singular and plural verb conjugations (eg, “The patient is receiving gender-affirming treatment, and they are pleased with the outcome thus far”). A consistent use of the singular they would seem to require using third-person singular conjugations throughout (“The patient is receiving treatment…. They is pleased…”) or plural conjugations throughout (“The patient are receiving treatment…. They are pleased….”). Is either approach correct?

The public discourse on pronouns has not provided much insight. It has prompted the argument that we all use forms of singular they-series pronouns in casual language, in sentences such as “If someone wants gender-affirming treatment, that is their choice” or “Give them an injection.”

But that is distinct from the current issue. In these usages, the pronoun is usually objective (them) or possessive (their or theirs), and the verb is conjugated in the third-person singular alongside another subject. (In the example sentences, these are “someone” and “that,” and in the command, an unspoken “you.”) When the singular they is placed immediately before the verb, the question of conjugation instantly reappears.

Weighing “they run” vs “they runs,” I looked for guidance in the AMA Manual of Style. It offered a few relevant thoughts: “In an effort to avoid both sex-specific pronouns and awkward sentence structure, some writers use plural pronouns with singular indefinite antecedents… Editors of JAMA and the Archives Journals prefer that agreement in number be maintained in formal scientific writing.”

But that seemed short of clear instructions. Still uncertain if constructions like “they is pleased” would please anyone, I reached out to Jennifer Finney Boylan, the New York Times contributor whose article on pronouns was published in 2018.

A quick email to her university address got an equally quick response. “I’m not certain about this,” she wrote. “I want to endorse ‘they is’ because the non-specific pronoun is still referring to a singular individual. On the other hand, ‘they are’ sounds better to my old, English professor ears.”

That seemed similar to how our society is handling the matter. On her authority, I decided to stick with conjugations that shift from singular to plural and let the matter rest until a thoughtful body of grammarians, popular opinion, and perhaps the next edition of the New York Times’ article series on pronouns weigh in with a definitive answer to conjugating verbs after a singular they.—M. Sophia Newman

Unconfusing “The Confusables”

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I was recently gifted a copy of Dreyer’s English: An Utterly Correct Guide to Clarity and Style, a book by Random House Copy Chief Benjamin Dreyer. It is one of the latest in a line of modern guides on editing and writing that shed the stuffiness usually associated with language and instead take on the subject with wit and humor.

Amid references to pop culture and classic literature, tips on spelling and punctuation, and even a relatable confession that the rules of grammar aren’t always  interesting (sorry, linguistics enthusiasts), there is a chapter called “The Confusables.” Confusables are homonyms, synonyms, similarly spelled words, words with comparable meaning — a word you thought you meant but did not. As Dreyer puts it, “Spellcheck is a marvelous invention, but it can’t stop you from using the wrong word when the wrong word you’ve used is a word (but the wrong word).”

He’s right. Spellcheck and software like Grammarly are useful, but they don’t perform the same function as an editor. This can feel hard to explain to businesses looking for a way to cut costs. Copy editors are increasingly difficult to find in newsrooms, advertising agencies, and other companies that decide to leave writers to edit their own copy. But, like with many of the finer points of editing, confusables are hard to detect, and a keen, well-trained eye is needed to spot them. (Not to mention it feels pretty darn satisfying to catch one.)

Dreyer includes a list of common confusables in his book. Here are a few I have seen recently:

Affect/effect

This is one of the more common pairs of confusables. There are some subtler differences between the 2 words, but most of the time the RAVEN rule (Remember, Affect is a Verb, and Effect is a Noun) will get you by.

Casual/causal

In medical and scientific editing, we frequently discuss the use of causal language in studies (ie, the inference that there is a relationship between variables).  Casual language might be used to describe a relationship with friends. A misuse of either of these words might be easy to read over because they are very close in spelling, but they are very different in meaning.

Discreet/discrete

To be discreet means to be prudent, while discrete means separate or distinct. I used to have a hard time differentiating these 2 words until a fellow editor shared her mnemonic device that the t between the e’s of discrete keeps them separate from each other.

Intermediate/intermittent

These confusables, though different in definition, have some crossover in usage. Intermediate means in the middle, while intermittent means in intervals. So, sure, a solution could be mixed using either intermediate or intermittent shaking. But how does one quantify an intermediate shake? It’s likely intermittent is meant in this situation, but if something isn’t completely clear, it’s always best to ask the author to clarify.

Peak/peek

This pair is tricky because writers might think of the oft-combined “sneak peek” and want to use the ea spelling for both. However, peak refers to a high point, such as the peak concentration of a drug, and peek means to look. The way I keep these straight is associating the ee of peek with the ee of peer or the 2 e’s in eye.

Rational/rationale

These 2 words have similar spelling and meaning, with only one letter setting them apart. However, rational means to be reasonable while rationale is the reason behind said reasonableness.—Jamie Scott

Race and Ethnicity

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One of my favorite chapters in the AMA Manual of Style is about inclusive language, particularly the section about race/ethnicity (11.10.2). Race/ethnicity is a complicated topic because these categories have cultural and biological implications. In scientific research, it is important to specify race/ethnicity of study participants to understand the generalizability of the results. AMA Style instructs authors to indicate who classified the race/ethnicity of study participants (ie, the investigator or the participant).

Recently, I edited a research article with a table of participant characteristics that listed race/ethnicity as white, black/African American, Asian, and other. AMA Style notes that Asian and Asian American are not equivalent or interchangeable and that authors can be queried to clarify. All participants in this study were from the United States, so I asked the author about using Asian American instead of Asian. The author declined the edit, so Asian it stayed.

The editor in me shrugged it off. Editing is meant to serve authors and their research, and unless something is inaccurate, I have no problem reverting to the author’s original wording. After all, even the CDC website uses Asian and Asian American interchangeably.

The noneditor side of me, though—the child of immigrants who grew up in the United States and spent childhood summers in Hong Kong and Taiwan—was frustrated. I have been told I’m either not Asian enough or not American enough, and I try to explain that I’m both. I’m Asian American.

(As a sidebar, I also want to point out that black/African American presents its own problems. Many researchers do include non-Hispanic black, but where does that leave Afro-Latinx? This could be a whole other blog post.)

Of course, I understand that it may be exhausting to list out all the racial/ethnic groups in a table, especially considering page limits. I do appreciate when authors list more specific racial/ethnic groups, even if for many of them, n = 0. Any type of representation is a big step. However, I’ve also seen manuscripts in which the only race designations are white and nonwhite. The AMA Manual of Style notes that we should avoid using “non-” (eg, white and nonwhite participants) because it is a nonspecific “convenience” grouping. Instead, editors can query the author about using a specific race/ethnicity or using multiracial or people of color to address the heterogeneous ethnic background of many people. As an editor, a human, or even a potential study participant, I would self-report my race/ethnicity as Asian American or a person of color but never as nonwhite.—Iris Y. Lo

Offensive Words and Apologetic Quotation Marks: Sorry Not Sorry

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News organizations everywhere had an important editorial decision to make in early January 2018 when President Trump categorized certain countries in a defamatory manner during a closed-door discussion about immigration in the Oval Office with Senators Dick Durbin and Lindsay Graham, among others.

  • “Trump decries immigrants from ‘shithole countries’ coming to US” (CNN headline)
  • “Trump derides protections for immigrants from ‘shithole’ countries” (Washington Post headline)
  • “‘Fox & Friends’ host called for Trump to clarify ‘s—hole’ comment shortly before denial” (The Hill headline)

In scientific reporting, as in politics and life, things sometimes get ugly, and when they do, we turn to apologetic quotation marks. In the examples above, the term shithole is a part of the story; without using the offensive term, the story’s meaning is lost. It’s interesting that these 3 examples apply the apologetic quotation marks in 3 different ways. The first example includes “countries” within the quotation marks, which is not necessary. The Washington Post example gets it right. And the example from The Hill is not fooling anyone. If you’re going to include it, include it. Crossing out a few letters in the offensive term is the literary equivalent to putting black bars over a patient’s eyes to make the patient “unidentifiable.” (←ironic use of apologetic quotation marks.) 

This is not a picture of my cat:

This is not an offensive word:

S—HOLE

You get the point.

The revised edition of the AMA Manual of Style will provide expanded guidance in the “Apologetic Quotation Marks” section of the Punctuation chapter, which currently only states that apologetic quotation marks are “sometimes used around words for special effect or to indicate irony.” Additional guidance will note that in some instances, the use of a potentially offensive term might be unavoidable if it is a direct quotation that is important to an article (eg, in a news story). In such cases, the offensive term may be published within quotation marks. The New York Times occasionally opens up its policy on including offensive terms in print. Ultimately, whether or not to include offensive language in an article is an editorial decision that comes down to how the term relates to the meaning of a story.—Lauren Fischer

   



Disability and Language

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I recently found myself in the middle of an intense inter-community debate regarding whether the term “disabled people” or “people with disabilities” should be used when speaking of people who have disabilities. I personally prefer to describe myself as a person with a disability (hard-of-hearing, to be exact), but there are many people within the disability community who object to the term and would describe themselves as disabled people. As that article highlights:

The description “disabled people” is preferred by people who follow the social model of disability, which prefers the term “impairment” to describe our conditions and argues that “disability” is caused by barriers put in place by society to prevent people with impairments accessing society “normally.’”

This is certainly true, but the barriers society has put in place regarding disability are often not fully realized by most people. I’ve lost count of how many times someone claims they “don’t need a microphone,” ignoring hard-of-hearing folks who won’t be able to hear without a microphone no matter how loudly the speaker projects. Unfortunately, society as a whole still views disability as a negative thing. The AMA Manual of Style combats such negativity by emphasizing “people-first” language. The style guide’s section on inclusive language advises writers to “avoid labeling (and thus equating) people with their disabilities or diseases (eg, the blind, schizophrenics, epileptics). Instead, put the person first.” In describing myself as a person with a disability, rather than a disabled person, I avoid defining myself solely by my hearing loss (not to mention the negative connotations that society has given the term “disabled”).  The same must be done when discussing patients or study participants. Avoid using phrases such as “confined to a wheelchair,” which implies that the person is somehow limited or by their wheelchair use. Instead, “uses a wheelchair” is preferable.

It is similarly important to avoid words or phrases that imply helplessness on the part of people who have experienced illness or trauma. For this reason, the style guide advises against using the term “victim”: instead of “victim of trauma” or “stroke victim,” use “survivor of trauma” or “person who has had a stroke.”

Use of people-first language and avoidance of emotion-laden terms such as “suffering” and “victim” offer patients autonomy and dignity even as they’re being written about anonymously in a journal publication that thousands of people read every day.—Suzanne Walker

 

 

 

Death Sentences

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Could it really be 15 years since we waited in this funeral home parking lot for a wake to begin? It seems only last week that we were here for her mother. Both women are now gone from our lives, too soon. We steel ourselves for a few moments more but exit the car when her grandmother arrives. I take the small woman’s frail arm, opposite the one holding a cane, and walk my mother-in-law into the building.

The funeral parlor hasn’t changed much. In place of easels with poster boards full of family photographs, a large-screen monitor at the back of the room runs a PowerPoint file chronicling my niece’s life. Friends and family watch and smile as they recognize themselves in photographs from happier days.

Funeral parlor conversations haven’t changed much either. She “passed away,” “is in a better place,” and “is at peace.” Most conversations are in those soft tones reserved for such occasions. Quiet laughter, though, is heard every so often as stories about fun times are retold.

Wikipedia includes a table of more than 131 expressions related to death categorized as slang, polite, formal, humorous, and so forth. In my work as a medical copy editor, we encounter expressions for death in many forms.

Large clinical trials may include a Kaplan-Meier graph illustrating mortality, with each treatment group represented by a curve that shows the percentage or proportion of patients still alive as follow-up progressed. The number of patients at risk at regular time intervals is provided in a table; the values dwindle as they advance in pace with the downward trajectory of their group’s curve. Text descriptions may list the different causes of death with a simple “(n = X)” after each one. “Seventy-two patients with visual impairment died during follow-up: myocardial infarction (n = 27), respiratory disease (n = 18), and renal disease (n = 12) were the causes most often listed for patients with this information.”

Case reports provide narratives of a single patient from presentation to the end of follow-up or death. In these manuscripts, I’m more likely to encounter euphemisms (taken from the Greek eu, “good,” and pheme, “voice”). The AMA Manual of Style describes euphemisms as “indirect terms used to express something unpleasant,” and states that “directness is better in scientific writing.” Part of my job, then, is to replace the euphemisms: patients died rather than succumbed or passed away.

Even reports of animal studies are not immune to the appearance of euphemisms. Such studies typically require the animal’s death to allow for dissection and subsequent measurement of bone, tissue, or ligament to assess outcomes. However, even in these manuscripts, I often replace sacrificed or euthanized with killed or humanely killed.

The Manual’s chapter on correct and preferred usage further states that “persons die of, not from, specific diseases or disorders.” An example of this usage could be the written as: “She died of complications of renal failure.”

Scientific reports may seem clinical and removed; patients may be grouped and their mortality is frequently categorized. Nevertheless, individual lives underlie advances in medical science. Although euphemisms seem called for when discussing the deaths of people we love, direct language, such as that used in our work, is no less respectful.—Connie Manno, ELS