Stigmatizing Language Common on Liver Transplant Websites

Stigmatizing words like “alcoholic” and “alcoholism” are frequently used on the websites of liver transplant centers, and this language may discourage patients from seeking treatment, according to a cross-sectional study.

A review of the language on 114 liver transplant center websites in the U.S. showed that 88% of those that mentioned alcohol use disorder and related conditions used stigmatizing language, reported Wei Zhang, MD, PhD, of Massachusetts General Hospital in Boston, and colleagues in a research letter in JAMA Network Open.

An additional review of 104 addiction psychiatry websites found that 46% of those describing alcohol use disorder used stigmatizing language. Zhang and colleagues noted that organizations such as the National Institute on Drug Abuse recommend language such as “person with alcohol use disorder” instead of “alcoholic,” and “alcohol misuse” instead of “alcoholism.”

“Our findings underscore the need for hospitals to improve their communications by updating their language to align with patient-first, non-stigmatizing approaches, which we know from experience can lead to better health outcomes,” Zhang said in a statement.

In an email to MedPage Today, Zhang noted that “in my clinical practice, I’ve witnessed the profound impact that empathetic, non-stigmatizing language has on improving patient engagement and treatment outcomes. The use of stigmatizing language can lead to patients becoming defensive and withholding crucial health information, fostering a sense of distrust.”

This is especially true for patients with alcohol-associated liver disease, he added. Feeling judged by doctors can make them hide their condition and delay getting help, often causing the disease to get worse before they seek treatment.

Using patient-centered language, on the other hand, promotes a sense of openness, Zhang said. “By adopting this way of communicating, we’ve seen patients become more honest about their drinking and why they do it. This honesty helps us take better care of them and guide them more smoothly through their treatment, including making big decisions like whether they need a liver transplant.”

In the study, two independent reviewers evaluated the websites of accredited U.S. liver transplant centers and addiction psychiatry websites at the same institutions.

They found that for the 53 websites mentioning alcohol use disorder specifically, 42 used only stigmatizing language compared with 11 that used only non-stigmatizing language. For the 60 websites that discussed alcohol-associated liver disease, 40 websites used only stigmatizing language versus 12 that used only non-stigmatizing language, and eight websites used both types of language.

For the 47 websites that discussed alcohol-associated hepatitis, 45 used only stigmatizing language, while only one used only non-stigmatizing language and one used mixed language, and for alcohol-associated cirrhosis (28 websites), 24 used “alcoholic cirrhosis,” while three consistently used non-stigmatizing language and one used mixed language.

In addition to the National Institute on Drug Abuse, the National Institute on Alcohol Abuse and Alcoholism and the American Association for the Study of Liver Diseases (AASLD) recommend the use of less-stigmatizing language, Zhang and colleagues noted.

According to the AASLD practice guidelines, “alcohol-associated liver disease (ALD) carries a significant stigma in society. It is increasingly recognized by providers that patients and their families seek to reduce the stigma of ALD, and a change from the term ‘alcoholic’ to ‘alcohol‐associated’ will help; thus, alcohol‐associated liver disease, alcohol‐associated steatohepatitis, and alcohol‐associated cirrhosis are suggested, retaining the familiar abbreviations (ALD, ASH, and AC, respectively).”

Zhang told MedPage Today that his group plans more research in this area. “Our research team is working on several projects to address the use of stigmatizing language in healthcare,” he said. “We’re looking closely at patient medical records to find and understand how stigmatizing language might affect treatment results. This work is important for helping healthcare professionals improve how they talk about and with patients.”

The researchers are also examining how alcohol-associated liver disease is discussed in scientific articles and in the media, Zhang added. They want to explore how the use of negative language changes the way the public and doctors think about the disease and how this could affect patient care.

An important limitation of the study was the challenge in defining stigmatizing language comprehensively, the researchers noted. “Although we did not encompass all stigmatizing language for alcohol-associated liver disease, our study shows more frequent use of terms such as alcoholic, alcoholism, and alcohol abuse on transplant websites compared with psychiatry counterparts,” they explained. “These findings highlight the need for further research on the association of language with alcohol-associated liver disease, perception, and treatment.”

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