In Chicago, many people with opioid use disorder avoid
going to the hospital for fear of becoming ‘dopesick’
By Mari Cohen
Photos by Lloyd DeGrane
Dan and Rhonda met in upstate New York. Later, when Dan left and ended up in Chicago, living on the streets, Rhonda moved to be with him. At night, in their tent in Chicago, they entertained themselves by having make-believe meetings of the “Mean Girls Club,” modeled after the movie; Rhonda would do different voices for the club’s imaginary members. Other times, Rhonda and Dan would read to one another. “I feel like we were soulmates, you know?” Dan said. “You only get one soulmate, you only get one chance at that.”
One day, Rhonda, who, like Dan, was addicted to heroin, developed a small wound in her arm where she’d been shooting. She continued to shoot into it; the wound grew and became infected. Soon the bones of her arm were visible. She and Dan argued—he wanted her to go to the hospital, but she refused, because she was afraid of going through opioid withdrawal. Finally, Dan and friends managed to convince Rhonda to check into the hospital. Within a few days, they learned the infection had spread to her heart. It was too advanced for recovery; Rhonda died after a week in the hospital.
These days, hospitals in Chicago are seeing a lot of patients like Rhonda—people with opioid use disorder who live on the streets. In 2017, Cook County saw 1,167 opioid-related deaths, the highest rate in the state. Many of those with opioid use disorder are homeless. By day, they “hustle” in the streets downtown, earning money to go to Chicago’s West Side and buy heroin. At night, many sleep on Lower Wacker Drive, below the streets of Chicago’s business district.
Heroin users like Rhonda are often reluctant to go to the hospital because they fear going through withdrawal. Others will leave early, against medical advice and with their health problems unresolved, once withdrawal begins to hit. It’s not a small fear: Dan described withdrawal—or “dope sickness”—as “the worst flu you’ve ever had, plus you break a couple of your bones at the same time to the point that you can’t even move them, and the same exact date this happens your whole family gets killed in a car accident.” For those who are severely addicted, getting access to heroin is no longer about looking for a high—it’s a necessity to ward off intense sickness.
Because of the severity of withdrawal symptoms, one of the most promising treatments for opioid use disorder is known as medication-assisted treatment, or MAT. It involves prescribing FDA-approved medications—buprenorphine, methadone, or naltrexone—that safely address a patient’s withdrawal symptoms and help quench the thirst for heroin or other opioids. Hospital doctors are legally authorized to give these drugs to admitted patients going through withdrawal, but the people I interviewed for this story reported mixed results getting their withdrawal symptoms addressed at Chicago-area hospitals.
“I have a blood clot in my leg as we speak. I’m in no hurry to go,” said a man named Larry. We spoke in a West Loop parking garage, slightly sheltered from the wind. “I know a lot of people who are in bad shape out here. And they don’t go in because they don’t really help you…There’s a girl sleeping with us—down where I sleep there’s about seven of us—she’s got two holes in her legs. You could put your hand inside her legs. She’s been to the hospital; she leaves early because she gets too sick and she’s miserable. She’s willing to basically lose her leg because of it, rather than be dopesick. If you’re never been dopesick, you can’t explain it, but it’s excruciating.”
“I know so many people who have died because they didn’t go to the hospital,” one man, who goes by Speedy, told me. Speedy, who was also a friend of Rhonda’s, spends his days on a corner in Chicago’s Loop, selling drawings. When we met, he had recently finished several months of inpatient treatment for endocarditis, an inflammation of the heart that can be caused by contaminated needles. Endocarditis nearly killed Speedy, in part because he had initially refused to stay in the hospital. “They wanted to admit me, and I said no. I didn’t have any dope on me,” he explained. Speedy said that when one of his best friends—who has since passed away—was in the hospital, Speedy brought him heroin every day to prevent him from leaving. “It might’ve been the wrong thing to do,” Speedy said, “but it was for a good intention because he was gonna die.”
Those familiar with the opioid epidemic likely know about the threat of overdose and the importance of access to Narcan to treat overdoses. But intravenous opioid users are at risk of many health problems beyond just overdoses. Shooting up carries a risk of infection and abscession at the injection site, blood clots, the introduction of bacteria into the blood, and more, all of which become more dangerous when left untreated. The severity of the epidemic is forcing doctors to quickly become savvy in addiction medicine, a field many of them have little training in. The stakes, as Rhonda’s story demonstrates, can be life or death.
I first learned about many addicted people’s fear of the hospital from Lloyd DeGrane, a local photojournalist who began getting to know homeless people as part of a fellowship three years ago and has since formed relationships across the homeless community. (It was DeGrane and his wife, Laurel Berman, who helped Dan finally get Rhonda into the hospital.) He introduced me to the people interviewed for this story. DeGrane spends many of his days walking around downtown and under Lower Wacker, giving out cigarettes, taking photos, and chatting with people about how they’re doing. Homeless folks often greet him with a smile and an exclamation: “Lloyd!”
DeGrane stays up to date on his friends’ medical needs, but he told me it’s difficult to find a pattern in how Chicago hospitals address patients’ withdrawal symptoms. At times, DeGrane said, he’s seen two people with opioid use disorder admitted to the same hospital at the same time, but only one will be given methadone. The process, in his experience, feels arbitrary. I learned through conversations with DeGrane that Northwestern had a reputation, among addicted people admitted to its hospital, for being strict and refusing to offer methadone to addicted people seeking care for their injuries, and the University of Illinois Hospital at the University of Illinois at Chicago—which most people just call “UIC”—was known for being more lenient.
Other people I talked to gave mixed reports. “Northwestern—they won’t give you anything,” Cliff, a man with opioid use disorder, told me. “A lot of people that need attention have left, because they’re going through withdrawal. Some of them have died,” Cliff said. He reported recently having a positive experience at Cook County’s Stroger Hospital; he went in for treatment for a leg injury, and they gave him methadone. Another of Lloyd’s friends—who had previously walked out of UIC against medical advice—was receiving regular methadone doses at Northwestern and feeling empowered to continue treatment on her serious hand wounds for the long haul. And a man named Sam said that at Stroger Hospital, where Cliff had a good experience, they “treat you like a jail inmate.”
Karim Khan is a third-year resident at University of Illinois Hospital and co-founder of UIC Street Medicine, a student group that provides medical care to people living on the street. As an undergraduate at the University of Florida, Khan was involved in student activism and worked with homeless people in Gainesville. Later, as a medical student at the University of South Florida, in Tampa, he co-founded a street medicine group to offer medical care, modeling the project on existing programs around the country. When he moved to Chicago for residency, Khan and two other students created UIC Street Medicine. Through this project, Khan began learning more about addiction and injection drug use, and he began to notice a gap in providers’ understanding of addiction, which affected how his street medicine patients got treated in the hospital, especially in the emergency room.
“In Chicago, you run a very high risk of going into the hospital and not having your opioid dependency treated,” Khan said.
I reached out to several major area hospitals to try to learn more about their policies for giving methadone or buprenorphine to patients with opioid use disorder. Patrick Lank, an emergency medicine doctor at Northwestern Memorial Hospital, wrote in an email that “It is standard to continue all patients’ outpatient methadone and buprenorphine (suboxone) regimens while they are admitted to the hospital for any reason. For patients who are not on medication to treat their opioid use disorder, we have inpatient specialists who can evaluate them while they are admitted and screen for their appropriateness and desire to undergo medication assisted therapy for opioid use disorder.”
At UIC, Khan said, providers are supposed to continue a patient’s existing methadone regimen if they are already established at a clinic. If a patient has not already started at a methadone clinic, providers are still allowed to give methadone, but, Khan said, it should “trigger a social work consult, where a social worker works with the provider to prescribe methadone.” Khan said that only recently has it become commonplace for UIC doctors to prescribe methadone for people who need it to stave off withdrawal. It took sustained work from street-medicine providers, as well as other hospital addiction specialists and advocates, to get to this point.
Representatives for Rush and UChicago Medicine did not respond to requests for comment on their policies.
At Cook County Hospital’s emergency room, doctors have become accustomed to prescribing buprenorphine to people experiencing opioid withdrawal, according to Steven Aks, the head of Cook County Health’s toxicology department and an emergency medicine doctor. The emergency room doesn’t typically give out methadone, Aks said, unless the patient is already on a methadone regime at a clinic, but methadone may be distributed in the hospital to patients who are admitted. The distribution of buphrenophrine in the emergency room is relatively new, but it has already made a big difference, Aks said. “I found that it has really reassured our patients. We’re doing a better job with this new approach.”
One evening in mid-January, I joined UIC’s Street Medicine team on one of their evening runs. DeGrane went too—he often joins the street medicine teams to help them find people who need care. The weather was more tolerable than it had been the week before, but I wouldn’t have wanted to be out all night in it. During the visit, DeGrane introduced us to his friend Sam, who was in need of hand warmers. Sam was seated atop two crates on a busy Michigan Avenue corner across the street from Millenium Park, where he often hustles. Thin and pale, with his head shaved, he carries a sign that says he’s going through chemo (he isn’t). Sam used to sit on just one crate, but because of a serious kidney issue, he can no longer get up from sitting that low.
The UIC team—which included a fourth-year medical student, a social worker, a pharmacy resident, and an internal medicine resident—knelt in a semi-circle around Sam, introducing themselves one by one. Sam is usually a “cheerful guy,” he told them, but he’d been having a rough time lately, feeling worried and scared. “I feel like I’m dying slowly,” he said. He no longer took off his boots, even to sleep, because he couldn’t bend down to manage it. And he’d been having trouble keeping on weight. Recently, Sam was admitted to Northwestern Memorial Hospital, but he left early, against medical advice, in order to manage his withdrawal symptoms on the streets.
Sam finds Northwestern a tough hospital to visit as a homeless and addicted person. Once, he said, when he was waiting for an appointment, a security guard made him wait next door in the Walgreens, instead of in the lobby. When he’s been admitted and asked for methadone, he doctors always tell him “no.” Internal medicine resident Emily Peninger asked Sam some questions about his health. The team urged him to go to his follow-up appointment at Northwestern and, when he said he would prefer to go to UIC, they agreed to help him try to transfer.
The two street medicine teams that operate in Chicago are able to give some care right on the spot. UIC’s volunteers go out once a week, and a team from nonprofit group The Night Ministry goes out five days a week. During expeditions with both teams, I observed volunteer doctors, residents, and medical students evaluating wounds and changing dressings, giving out Advil and other common medications, calling in prescriptions, and answering patients’ questions about health concerns from urinary issues to pregnancy. Khan said street medics can also assess vitals and do basic wound cleanings. In some cases, the UIC team even helps patients manage complex medication regimes, like blood thinners, by following up with them on the street. But more involved procedures and assessments—including blood tests, anything requiring anesthetic, surgeries, and IV antibiotics for serious infection—must be done in a hospital or clinic.
Khan wants patients like Sam to feel more comfortable having serious health complications addressed in the hospital. “I think the biggest sort of barrier to treating these folks well comes down to miseducation,” he said. “That’s both on the provider’s part and on the patient’s part. There’s a lot of misinformation floating around regarding the treatment of opioid use disorder and how to provide opioid replacement therapy. So providers will either not know the rules or regulations or protocols, or patients will think there are regulations and protocols in place to stop them.”
Because there are restrictions on prescribing buphenropherine and methadone in outpatient settings, many doctors don’t know that they’re allowed to prescribe them in inpatient settings, said Nicole Gastala, a family medicine physician expanding the addiction and behavioral programs at Miles Square Health Center, a federally-qualified patient center affiliated with UIC. Gastala herself had little background with medication-assisted treatment until she began working at a clinic in rural Iowa, where she learned on her feet how to prescribe buphenropherine to treat addiction.
In order to prescribe buphenropherine to outpatients, doctors must complete eight hours of training and receive a waiver from the government. They can then prescribe buphenropherine in any setting, from a private office to a community health center. Methadone, on the other hand, can only be given out at government-certified “opioid treatment programs,” or OTPs. Yet the federal health code includes an exception for hospital stays: “certification as an OTP under this part will not be required for the maintenance or detoxification treatment of a patient who is admitted to a hospital or long-term care facility for the treatment of medical conditions other than opioid use disorder.”
“Those have been foreign drugs to a lot of docs in the emergency room,” said Ralph Ryan, a retired cardiologist who volunteers as a street medic for The Night Ministry. “They’re a little leery of giving too much, they’re a little leery of patients faking symptoms.” Ryan said he believes that most doctors generally have good intentions, but “if you don’t understand addiction, then there’s a tendency for bias.”
In the last few years, Khan said, he’s seen significant changes in how the University of Illinois Hospital at UIC treats patients. Street medicine volunteers like those I met have been able to advocate for their patients and raise awareness about addiction issues in the hospital. UIC is also starting a monthly case conference between providers in emergency medicine, general medicine, family medicine, and addiction, to discuss and evaluate how patients with opioid use disorder have had their cases handled.
Khan said they are also working on additional training and approval to allow as many providers as possible to give buprenorphine to patients who come in but are not admitted to the hospital. He finds the strict regulations on dispensing buprenorphine and methadone in outpatient settings counterproductive for treating addiction, especially because, he said, other drugs that are just as dangerous do not have these regulations. “It’s conservative, traditional morals being legislated,” he said.
People with opioid use disorder who feel confident communicating with doctors might have an advantage in getting the care they need. Cliff said he gets methadone to manage withdrawal when he goes to the hospital because he “knows how to talk to doctors.” If he hadn’t been given the methadone when he recently spent five days at Cook County Health’s Stroger Hospital for a leg injury, he would’ve left, he told me. “I just tell them the truth. As soon as I get there, I tell them who I am, and what I’m going through. They usually take care of me.”
Peer recovery coach programs are one way to help more patients with addiction advocate for themselves in the hospital. For about a year and a half, Cook County Health has had grant-funded certified peer recovery coaches in the emergency room during the days and evenings. These coaches, who are in recovery from addiction themselves, are trained to support anyone with opioid use disorder who comes into the hospital and can help patients get linked to treatment programs if desired. Gastala said she and other addiction advocates at UIC have applied for a state grant, which would help pay for peer recovery coaches in their emergency room.
Peer recovery coaches “can also educate providers about the discomfort of the individual,” said Steven Brown, a UIC social worker who also worked on the grant application. “They can negotiate to make sure that the person’s needs are being met too.”
“I can’t say enough great things about having them here,” said Aks, the Cook County Health physician, of the recovery coaches.
It’s also crucial that, in response to the opioid epidemic, medical schools integrate instruction on addiction into the curriculum, Khan said. In fact, he told me, it’s a problem that this hasn’t been done already. “It speaks to our biases as a culture. The opioid epidemic affects everyone, but communities of color, poorer communities, they’re the ones who have been hit the hardest. And they’re historically neglected…If the opioid epidemic were a problem which specifically affected rich white men, we’d have had a very different approach to it.”
Dan told me he’s learned that UIC has come a long way in how it treats addicted patients, but it’s too late for his wife. These days, two-and-a-half years after Rhonda’s death, Dan is keeping on with his daily routine. Outside of his “hustle” time, he visits the Harold Washington Library most days—we met and talked there in a private room—and reads the papers. His favorite columnist is the Chicago Tribune’s Rex Huppke. He’s also built himself a sturdy sleeping structure near the expressway. Made of pallets, plywood, tarp, and other materials, it helps him stay warm and dry in the winter.
“Now that she’s gone that’s why I try to stay as drunk as possible all the time and stay high all the time,” Dan said. “All I’ve got to say is that if the hospital had given Rhonda what she needed so that she wasn’t sick and didn’t have anxiety, she would still be alive, because she would’ve stayed in there, and she would’ve gone a lot sooner.” ■
This project was supported by Rise Local, a project of New America.
Mari Cohen is associate editor of Belt and senior editor and workshop manager at the South Side Weekly. She previously worked for Injustice Watch.
Cover image: Members of the UIC street medicine team treat a man living on the street. Photo by Lloyd DeGrane.
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