Language Matters for Optimal Care

A 1969 letter to the editor of the American Journal of Diseases of Children decried the term “funny looking kid (FLK),” which pediatricians had begun to use to describe children with atypical facial features. The letter writer, a Boston physician, recalled encountering a tearful mother who had just heard a group of doctors use it to describe her child.

The letter writer denounced FLK – and suggested that “unusual appearing child” would be a better choice.

Healthcare has made massive strides since then in understanding the importance of using language that respects patients. But in a complex and changing culture, even the most well-meaning caregiver can sometimes feel unsure whether they are saying the right thing in the right way every time. This is especially true when it comes to communicating about gender, weight, mental health and more.

When in doubt, it may help to hear from colleagues who care for specialized patient populations. Cecile Ferrando, MD, MPH, is Director Cleveland Clinic’s Transgender Surgical Services. While society’s discussions around gender identity have placed special attention on personal pronouns (he/she/they), Dr. Ferrando believes that the issue is broader than that. It’s about empowering patients.

“I’m a big believer in self-actualization and the mind/body experience. If you embody self-efficacy, you do better in almost every single condition that you’re being treated for or recovering from,” Dr. Ferrando says. “When we don’t use the right language, or when we dismiss patients, we are chipping away their self-efficacy. There’s a massive mental component to being well.”

Leslie Heinberg, PhD, agrees. As Vice Chair for Psychology in the Center for Behavioral Health Department of Psychiatry and Psychology, as well as Director of Enterprise Weight Management, she is aware of long-term biases that emerge in language and other behavior for patients experiencing issues with weight.

“Data indicates that patients who have the disease of obesity often avoid care because they’ve had these negative experiences,” she says. “That can have an impact on things completely unrelated to their obesity.”

Over the last decade, Dr. Heinberg adds, health experts have recognized the importance of using language that puts patients first. “Just as we don’t say ‘diabetics’ about a patient with diabetes, similarly we don’t say ‘he’s obese.’ We say he has obesity,”she says. “People might think that’s just a semantic difference, but it’s really important. The disease cannot be a description for the entire person.”

Patient-first language is a key ingredient of better communication, but as the experts point out, it’s far from the only one.

Gender-related communications

At Cleveland Clinic, sensitivity around language regarding gender has improved noticeably over the last decade, says Dr. Ferrando. Including sexual orientation and gender identity (SOGI) data in Epic, the health system’s electronic medical record system, was a big step.

“It was really an important change to have a place for patients to include their gender identity, their pronoun preferences, their sexual partner preferences,” Dr. Ferrando says. “We made it part of the regular medical intake, and we made providers aware that the tab exists.”

The availability of that information helps prevent caregivers from making incorrect, exclusionary assumptions.

Further advancements followed with the development of Cleveland Clinic’s Center for LGBTQ+ Care and the 2016 opening of the Transgender Surgery & Medicine Program within it. Over time, some of those patients sought out care from other Cleveland Clinic providers for issues unrelated to gender, which amplified awareness.

“Our patients gained a lot of visibility, because when providers go into their charts, they see their whole history – their diagnosis of gender dysphoria, or that somebody is transitioning into their preferred gender role,” she adds.

Along with awareness comes the challenge of developing linguistic habits that respect the patient’s sense of identity, whether they are transgender, cisgender or nonbinary. The goal is inclusivity, which requires an awareness of complexities. For a patient who is biologically female but identifies as male and also is pregnant, a phrase like “pregnant woman” can be fraught.

“We’re starting to use ‘pregnant persons’ instead of ‘pregnant women.’ We use terms that aren’t gender-specific for things that don’t need to be gender specific,” she says.

“When I think about what inclusive language is, it just means being a little bit more broad and free of bias,” she adds. “There’s no reason to exclude patients or dissuade them from seeking care that they need.”

Neutralizing language around weight

Within the realm of weight, Heinberg notes, advocates have changed some of the linguistic culture – the best example being the person-first phrase “patients with obesity” rather than “obese patients.”

But historical biases around obesity still prove challenging, even in the medical community. “Science has improved, but as we have come to understand all of the complexities that cause obesity, there are pockets of thought in medicine that still regard obesity as entirely a lifestyle disorder and body weight as entirely under the control of the individual,” Dr. Heinberg says.

Weight-related attitudes are deeply ingrained in culture, she says.

“Even providers who take care of patients with obesity, and people who do research in that area, still have some implicit bias – the kind that’s below our conscious awareness,” Dr. Heinberg says. “Body positivity has improved in the time that I’ve been in the field, but there’s still such a strong bias toward thinness and fitness.”

One of the most bothersome terms to those with obesity as well as their advocates is the term “morbid obesity,” long used as a medical description for people who were 100 pounds or more over their ideal weight and had at least one weight-related health problem. The term has generally fallen out of favor, and for medical purposes the U.S. Centers for Disease Control and Prevention now describes obesity as Class 1, Class 2 or Class 3.

But medical coding systems in some instances haven’t caught up. Patients can still in some cases access their health records digitally and see themselves described as “morbidly obese” or “grossly obese” by their doctor.

That said, healthcare providers can set a more welcoming atmosphere, and that doesn’t mean they have to avoid addressing weight as part of a patient’s overall health, Dr. Heinberg says.

“It’s so much better to just talk about weight than to point out obesity,” Dr. Heinberg says. “You can introduce the topic with questions, such as ‘What are your thoughts about your weight?’ Everyone has weight. You have a weight, I have a weight, and a newborn baby has a weight. There’s no good or bad to just speaking about weight. If the patient has come in because the osteoarthritis in their knee has gotten worse, or their diabetes is not as well controlled, you can ask them ‘What are your thoughts about how your weight might be playing a role in this?’”

That approach removes judgment and allows for conversation and collaboration, she says.

Furthermore, she adds, a provider’s office can be made more welcoming by placing the scale away from high-traffic areas, in a space that can be draped or closed off, and by asking patients for consent before weighing them.

“Even if you need the weight, I like to ask for consent,” she says. “Ninety-nine percent of the time, my patients say yes. If you know they’re anxious, you can offer to weigh them facing away from the scale”.

Medical assistants need to be trained to weigh people without comment, Dr. Heinberg says, and that goes for patients of any weight or body type. A patient might look healthy and fit but have an eating disorder that leaves them anxious about the scale.

Making language inclusivity a priority

At Cleveland Clinic, diversity and inclusion work includes ongoing discussions around language inclusivity. The health system also convened a working group to develop a diversity and inclusion style guide, which is intended as a living-document resource for those who create written communication. It includes guidance and a glossary that addresses topics mentioned here as well as mental illness, physical abilities, race, sexual preference and more.

Thoughtful language is never a one-and-done effort, but caregivers who remain mindful and empathetic can go a long way toward making patients more comfortable.

“The vast majority of people have good intentions,” Dr. Heinberg says. “They’re not trying to insult their patients or hurt their feelings. But once we know how to do better, we are obligated to do better.”