Reframing Shame

“I will always remember the young couple I met in Oklahoma who had lost their son to an opioid overdose,” recalls U.S. Surgeon General Vivek Murthy, M.D.

Previously in their lives whenever they had a major struggle, the couple told Murthy, neighbors would come over. They’d drop off food, visit, and sit with them in their living room, see if they were okay.

“But when their son died after opioid use disorder, it was silent,” Murthy says. “Nobody came over. Nobody visited.”

As the nation’s top public health ambassador, Murthy has visited with many families of victims of the nation’s deadly opioid overdose epidemic. More often than not, he says, people don’t know what to say or what to do when a child or young adult experiences a fatal overdose. The stigma around substance use disorder can be crushing and expansive: affecting the individual, family, friends, and everyone around – including teachers and healthcare providers.

But it doesn’t have to be that way, urges Murthy, who spoke with NIH Director Francis Collins, M.D., Ph.D., about the stigma of substance use disorders during a virtual conversation at the second annual Helping to End Addiction Long-term^® Initiative, or NIH HEAL Initiative^®, Investigators Meeting in May 2021. Although the main topic of their conversation was the impact of loneliness on health and happiness, stigma was a central focus, since it remains a significant barrier to treatment and care of people with substance use disorders.

For one, words matter, and many resources are available to help people reframe the way we talk about substance use disorders. But it’s also important to highlight providers doing good work.

“Before I started providing treatment for people with opioid use disorders, these were the patients I dreaded the most,” Murthy recalls of one such conversation with a primary care provider. “Because I felt powerless, and I felt frustrated, and I didn’t know what to do,” the provider added, “but now, this is some of the most rewarding work that I do.”

A Teachable Moment

“I’ll never forget the moment that really changed things for me as an individual and us as a hospital,” explains Richard Bottner, D.H.A., PA-C, an assistant professor in the Division of Hospital Medicine at Dell Medical School at the University of Texas at Austin. He also provides clinical care at Dell Seton Medical Center.

“My patient was sitting comfortably on the sofa in his hospital room, laughing, smiling, and playing Led Zeppelin on air guitar,” recalls Bottner. The patient went on to tell him, “I am so happy, I feel like I am finally being treated as a whole person, like a normal human being.”

During a previous stay for a heart infection, the patient had been found injecting heroin into his intravenous tubing, prompting alarm from the hospital staff. Back then, the same patient – then on his third readmission for a heart infection caused by two decades of drug use – had sung a very different tune to his care team.

“ ‘Nobody cares about me, [the hospital] only cares about my infection, not the other things that are making my life so hard,’ ” Bottner recalls the patient saying.

“That’s when it dawned on me that what the patient really needed was recognition of his addiction and a path to treatment, recovery, or harm reduction,” Bottner explains.

After relating his story, the patient received buprenorphine to treat his opioid use disorder – the main illness affecting his life, Bottner notes. “His withdrawal symptoms had dissipated, and he was in much less pain.

But, he adds, “Perhaps the bigger impact was that we approached this fellow human being with substance use disorder as a patient deserving of care rather than as a problem.”

Through learning about stigma and developing tools to help providers avoid it, scientists aiming to increase access to addiction treatment in hospitals are taking an important step toward tearing down stigma, and the issue deserves to move to center stage for much greater awareness.

Research on how to change behavior and practices will likely steer change. The topic was discussed in detail at the June 10, 2021 Stigma of Addiction Summit, co-organized by Bottner and the nonprofit organization Shatterproof and sponsored by the National Academy of Medicine’s Opioid Action Collaborative (the NIH HEAL Initiative is a member).