When Mass General transplant hepatologist Wei Zhang says he wants his colleagues to think before they speak, he has the tragedy of a recent patient in mind.

Admitted to intensive care for advanced alcohol-associated liver disease, the 36-year-old woman hid the truth when asked about her drinking. “She was like, ‘No, I quit over a year ago, I didn’t drink at all,’” said Zhang, also director of the hospital’s Alcohol-Associated Liver Disease Clinic. “But we have tools that can detect the use of alcohol in the past three, four weeks.”

The patient, who had been traumatized by years of physical abuse, was denied a liver transplant, in part because she withheld information about her alcohol use. Her death days later was “a consequence of stigma,” Zhang said. Patients too often “feel they’re being judged and may fear that their condition is seen as a result of personal failing rather than a medical issue that needs treatment.” 

Amid increases in high-risk drinking and alcohol-associated liver disease across the country, he hopes that new research can help complete the years-long work of erasing that stigma, saving lives in the process. 

For decades, medical terminology has labeled liver disease and other alcohol-related conditions as “alcoholic”: alcoholic liver disease, alcoholic hepatitis, alcoholic cirrhosis, alcoholic pancreatitis. Meanwhile, clinicians and administrators have described patients as addicts and alcoholics. 

More recently, specialists and advocates have sought with some success to revise how we talk about substance use and those struggling to overcome it, not just to reduce stigma but also to combat bias among medical professionals. According to the National Institute on Alcohol Abuse and Alcoholism, the term “alcohol use disorder” is now preferable to “alcohol abuse,” “alcohol dependence,” and “alcoholism.”

“Emphasizing non-stigmatizing language is crucial not only for fostering honesty but also for supporting the overall treatment process and patient outcomes,” Zhang said. 

Wei Zhang.

The new study is a step toward that goal. Inspired by his patients, Zhang set out to observe whether the terminology used by institutions that treat alcohol-associated liver disease reflects or rejects stigma. He and his team reviewed messages on more than 100 accredited liver transplant center websites, along with language used by addiction psychiatry sites. They found that almost nine of 10 transplant center websites use stigmatizing language such as “alcoholic.” Less than half of addiction psychiatry websites do the same.

“The gap between professional society recommendations and actual practice is concerning, since patients frequently use these online resources for information which can significantly influence their behavior and perceptions about alcohol-associated liver disease,” Zhang said.

Zhang’s anti-stigma efforts are grounded in strong evidence, according to Harvard Medical School psychiatrist John F. Kelly, who published “Does It Matter How We Refer to Individuals with Substance-Related Conditions?” in 2009.

“Emphasizing non-stigmatizing language is crucial not only for fostering honesty but also for supporting the overall treatment process and patient outcomes.”

“Drug use disorder and alcohol use disorder are among the most stigmatized conditions universally across different societies because people feel that it’s self-induced — that people are to blame because they put it in their body,” said Kelly, also the founder of Mass General’s Recovery Research Institute. “Just because they made that decision initially, doesn’t mean they plan on becoming addicted.”

In the 2009 study, Kelly and his colleagues described patients to more than 600 clinicians, alternating between “substance abuser” and “having a substance use disorder.” Those in the latter category were viewed more sympathetically and as more worthy of treatment. 

“I was quite surprised just how susceptible they were,” Kelly said. “These were passionate, dedicated clinicians. They were still susceptible to the negative punitive bias.”

They still are today, Zhang’s findings suggest. 

“We are very good at seeing patients with liver disease but if we add this behavioral mental disorder, it is somewhat out of our scope,” he said. “I think education could at least have them be more familiar with this topic and be willing to at least listen to the adoption and use of non-stigmatizing language.” 

“I think education could at least have them be more familiar with this topic and be willing to at least listen to the adoption and use of non-stigmatizing language.”

Building on the new study, Zhang has recommended to healthcare institutions and professional societies that they implement website feedback mechanisms and carry out regular content audits to guard against potentially harmful language. 

“The steps we are recommending should not only help to align clinical practice with sound language guidelines, but also foster a more empathetic and supportive healthcare environment for patients,” he said. 

Zhang also said healthcare institutions should look to leverage technology to support adoption of appropriate standards.

His team is collaborating with Mass General’s Research Patient Data Registry to obtain de-identified patient records, which they plan to review for instances of stigmatizing language. He hopes the process will help researchers quantify the prevalence of such language in clinical notes and identify patterns that can inform interventions. The team will also analyze the association of stigmatizing language with patient outcomes.