Cocoa Elmore was 50 years old and addicted to crack cocaine when she checked into the hospital with chest pains.
“As soon as they asked if I had used street drugs and I said yes, the doctor’s whole demeanor changed,” said Elmore. “He said, ‘there’s the problem right there.’ His tone and body language changed, and he was quick to make sure I got discharged.”
While Elmore got pushed aside, many patients in this situation voluntarily leave the hospital before they are officially discharged. The hospital term in that case is “against medical advice,” and it describes what happens when patients depart before medical staff say it’s safe or advisable to go. In both instances, patients end up feeling rejected by the health care system and reluctant to return.
Elmore eventually got diagnosed with acid reflux at another hospital. Eight years later, she has recovered from addiction and is working as a grief and trauma program coordinator at Twin Cities Recovery Project. But she says she still hesitates to go to any emergency room.
About 1 or 2 percent of all people hospitalized in the United States leave against medical advice. But people who use drugs, people of color, and people experiencing homelessness leave early at much higher rates. According to a 2017 study, about 12–15 percent of people of color with opioid use disorder leave against medical advice. And that doesn’t include those who feel that the hospital initiated a discharge too early—pushing them out the door before they felt better.
One nurse in Minneapolis offered a stark assessment of what happens to the unsheltered patients with drug addiction whom she brings to the ER. She estimates that half of these patients—whatever their condition — leave within 30–40 minutes.
Paramedics say they often pick up people who are still wearing their hospital bracelets. A Minneapolis addiction outreach worker said he’s seen people leave the hospital with a PICC line, a long tube similar to an IV, still in. Many of these patients are continuing to suffer from the ailment that landed them in the hospital and will either remain ill or need to return for care, often to the same medical facility.
Avoiding the medical system has become a common goal for people living on the streets with drug addiction, sometimes at the expense of losing a limb or putting their life at risk.
The problem isn’t new, but it has been exacerbated by the current landscape of street drugs. The influx of fentanyl has led to more overdoses, especially among people of color, because of the extreme potency of the drug.
Fentanyl users are also at a higher risk of infections. To keep up with the short-acting nature of the drug, a habit that previously required four or five needles a day now can require up to 30. That means a lot more injections, often with unsanitized needles and reused supplies.
The proliferation of the tranquilizer xylazine (often called tranq) which can cause mysterious wounds, also ups the risk of dangerous and disfiguring infections. On the streets, taking prevention efforts and good care of infections is nearly impossible, despite the efforts of harm-reduction advocates.
“We hear stories of people ending up in the hospital and every step of the way experiencing stigma,” said Jack Martin, co-founder and executive director of Southside Harm Reduction Services. “Every interaction is full of judgment both for drug use and housing related stuff—and potentially racial stuff, too.”
Research on why people leave the hospital against medical advice is in its infancy. A handful of studies suggest patients make this choice based on a range of issues, although most can be traced to bias or perceived bias from medical providers.
Consequences include increased risk of readmission and death for patients. But there are also repercussions for hospital systems, since it’s more expensive and less efficient to treat people hopping from one system to another.
In the past few years, hospitals have begun to launch programs that could alleviate the problem by changing how they treat patients with addiction issues. But potential solutions have to address the reluctance of many doctors to give opioids to people who are addicted to them. Solutions also need to overcome long-held societal stigmas around homelessness, addiction, and race.
Why people leave against medical advice
Dr. Ryan Kelly, a doctor trained in internal medicine and pediatrics, became interested in addiction treatment when the clinic tasked him and colleague Dr. Cuong Pham with opening a suboxone clinic at Community University Health Care Clinic, in Minneapolis, several years ago. Seeing first-hand the challenges of people who use drugs seeking health care, they got certified in addiction medicine in 2020. Next, they applied for a grant through the University of Minnesota to start a program to work directly with drug-addicted patients who check in to the hospital.
They piloted the program at M Health Fairview University of Minnesota Medical Center. Along the way, Kelly noticed how many patients left the hospital early, and he started keeping track:
- 0.9 percent of all Fairview patients leave against medical advice
- 5 percent of all people with diagnosis codes for opioid and meth use leave against medical advice
- Of that subset, 10-12 percent of people of color leave against medical advice
The program has become a permanent part of treatment at M Health Fairview University of Minnesota Medical Center. Kelly invited Sahan Journal to accompany him on his morning rounds to see how the program works and talk to patients who were willing to share their stories. And he offered some of his learnings about why it’s so difficult for people with drug addiction to undergo medical care in a hospital:
- The hospital might not realize that the patient is using fentanyl or other opioids. Or the medical facility doesn’t allow continued use of opioids in the emergency room, or does not provide medications that treat withdrawal symptoms. In any of those cases, many patients will leave out of fear of withdrawal.
- The hospital may conduct a room search looking for outside drugs. Having found them, the hospital may kick out the patient.
- The hospital may not provide resources for uninsured patients.
- Family and friends may not be able to visit.
- Doctors may not discuss the risks of leaving early.
- The hospital may not provide resources for appropriate followup care.
A 2016 study of why patients leave against medical advice described the problem as “co-constructed by patients and providers through miscommunication, divergent priorities, mistrust, and unspoken concerns on both sides.”
Often, these miscommunications reveal medical-system bias or perceived bias. In interviews with eight people who left various hospitals across the Twin Cities before completing care, every one cited biased treatment as the problem. Most remembered the exact moment that they perceived the provider’s attitude change, pegging it to the discovery of substance use.
‘So you’re recovering from what now?’
Cathy Jones, who works at Twin Cities Recovery Project, described an incident from 10 years ago, when she fell on her back and dislocated three vertebrae. She went to an emergency room in Minneapolis, and at first everything seemed to be going well.
“They were doing everything, getting the IVs in and all that,” she said.
But then a doctor came in and started asking questions. As soon as he discovered her history of illicit drug use, he asked, “So you’re recovering from what now?”
“I’ve been a recovering crack addict for over 16 years,” she said.
His behavior changed, she said, and “the judgment came in.” The care team started taking the IVs out of her arm, she said.
“They said, ‘Well, you should be OK, you have a bruise so we’re just going to give you some Tylenol and muscle relaxers.’”
People with opioid-use disorder face similar issues in the E.R. (The term “opioid-use disorder” refers to the chronic and harmful use of drugs like fentanyl, heroin, or oxycodone, outside of medical care.)
Standard protocol dictates that these patients get over-the-counter painkillers in the hospital instead of opioids. Someone who routinely uses opioids who goes to the hospital with an infected wound, for example, might get offered Tylenol instead of the stronger painkiller provided to other patients.
Yet patients with opioid-use disorder often need more opioids to control their pain, since they have developed a high tolerance for the medication, Kelly said. If the hospital declines to give these patients opioids, they face excruciating withdrawal symptoms such as nausea, fever, sweating, vomiting, and diarrhea. Although rare, withdrawal from opioids can even cause death.
Put plainly, “if we don’t treat opioid withdrawal, there’s an increased risk for leaving,” said Dr. Beth Bilden, who works in emergency medicine at Essentia, in Duluth.
Experiencing both stigma and withdrawal is too much for many patients. So after an initial round of treatment—say, antibiotics that make an infection a bit better—many will bolt.
Brad Polz did exactly that after he got a broken nose stitched back together. After the stitches, doctors wanted him to stay until his electrolytes were better balanced.
“They thought I needed additional treatment beyond fixing my nose,” said Polz, who is in his mid-40s and a patient of Kelly’s. When Sahan Journal visited him in the hospital, he was experiencing abdominal pain and sometimes needed to stop talking.
He continued, “But I knew I still had booze at home, and I remembered exactly where the bottle was sitting. I wanted to get to that bottle as quickly as possible. So I left and continued to drink until I got to the point where I was so sick because I didn’t treat my symptoms. And I ended up back in the hospital for alcohol poisoning.”
In other cases, Polz says he left after experiencing stigma because of his substance use. “Once you are mistreated, you’re not going to talk to a nurse and ask for someone else. It’s not like that.” Once you’re mistreated, he said, you feel rejected by the entire system.
‘The Hippocratic Oath only goes so far’
There’s no hiding current or former substance use: If a nurse or doctor doesn’t read it on a patient’s chart, they can often tell from the nature of a wound or the state of a patient’s veins. A provider might complain that they can’t find a good vein, or tell the patient they’d get better care if they stopped using.
Medical providers might not appropriately numb the patient before treating the wound, said Sue Purchase, Executive Director of Harm Reduction Sisters, in Duluth. (Several other harm-reduction experts made similar assertions.) Or the hospital may have the room searched for drugs.
“So any further care, it is hampered by the judgment,” Purchase said. “The stigma, the poor care … the Hippocratic Oath only goes so far in terms of medical treatment. … and if you get shitty care, why stay?”
These stories get passed around, and people who hear from friends about such experiences may be less likely to seek care for themselves. Many hospitals have developed reputations for providing poor care to people with substance-use disorder.
“Especially in rural areas, people will say, ‘Don’t go there; they’ll treat you like shit,” Purchase said.
Perhaps the most common complaint is that patients say they feel judged by providers who think they are angling for drugs.
Cathy Jones, Twin Cities Recovery Project
The first thing the medical people think is that you’re drug seeking…And I’ve been in recovery for 16 years.
When Deanna Martin, now 48, went to a Minneapolis hospital for a possible kidney infection, the provider asked if she’d tried ibuprofen. “But I didn’t ask for pain meds,” she said. “It hurt my feelings. The first thing the medical people think is that you’re drug seeking…And I’ve been in recovery for 16 years.”
Jones, the woman who fell and hurt her back, recalls leaving the room in tears and complaining about her treatment at the security desk. Eventually, after sharing her experience with patient advocates at the hospital, someone from the ER called to apologize. She still avoided that hospital for three years.
How doctors see the problem
Before he started working alongside outreach workers at homeless encampments, Dave Glanzer worked as a clinical nurse in a major hospital system. That background gave him perspective on how the medical system views patients with drug addiction.
“It’s just not possible for a medical person to read a chart and not have their antenna up,” he said.
As soon as a doctor or nurse finds evidence of substance abuse, even former substance abuse, “the patient will get stigmatized because the chart is a big ‘kick me’ sign,” he said.
Glanzer left hospital work in part because he was exasperated with the culture in which he was sometimes called upon to tie down or restrain noncompliant patients. But he understands what prompts the doctors’ and nurses’ thinking.
“A lot of it is fear,” he said, “and it comes out as, ‘I’m angry that they’re misusing the system.’”
Taking care of patients with substance abuse can be a liability; doctors and hospitals are wary of getting duped and possibly facing professional sanctions for misprescribing opioids, he said.
“They are scared [patients] will waste their money and act chaotically,” he said. “So it can be easy to be like, ‘No, you don’t get to have treatment.’”
That dynamic is exacerbated by the fact that most doctors and nurses either didn’t receive addiction training in medical school or went through training that’s now outdated. Although more training is available now, there’s still a pervasive lack of understanding of addiction as a physical problem.
Taj Mustapha, the chief equity strategy officer at M Health Fairview University of Minnesota Medical Center, looks back skeptically at the training she received in medical school, over 20 years ago. “People used a moral framework for all sorts of stuff,” she said. “As a clinician, I can tell you that there has been increased attention to framing addiction within the biomedical framework as opposed to a moral framework.”
That moral framing means that two patients could visit a hospital with the same physical complaint and get very different treatment, Glanzer said.
“If I get a staph infection while gardening, I’ll go in and get antibiotics,” he said. “But a person using drugs with the same infection will get the third degree, because there’s a perception that if they just would cut out the needlework, they wouldn’t be in this situation.”
A doctor or nurse’s bias often emerges through language. For example, a medical provider may think of people as “clean” or “dirty,” Glanzer said. They may even say something out loud like, “this is a hard stick, you’ve ruined your veins.”
“The subtext is if you didn’t inject yourself and ruin your veins I could do my job,” Glanzer said. “‘Why are you so hard to help?’”
Some hospitals may institute extra security or conduct a room search. Bilden points out that doctors or nurses may simply be following misguided drug-use policies set by hospitals.
This practice can also come out of fear. “Patients with substance-use disorder trigger our biases,” she said—a statement that could apply to people in many other professions and sectors of society.
Repercussions
After years of drug use and negative experiences in the hospital, 40-year-old Jeff had grown adept at avoiding health care. (Jeff asked to be identified only by his first name because he did not want to jeopardize his living situation.)
“The stigma was obvious,” he said. “I feel like almost every time I’ve been in the hospital since my addiction, I was basically overlooked and discharged as quickly as possible. A lot of that was when I was homeless, and that made it really tough.”
Jeff, patient at University of Minnesota Medical Center
I feel like almost every time I’ve been in the hospital since my addiction, I was basically overlooked and discharged as quickly as possible. A lot of that was when I was homeless, and that made it really tough.
During the past year, Jeff’s back had been bothering him so much that he usually walked around hunched over. He treated the pain with opioids—and overdosed. “I was doing a lot of self-medicating when I should have went in and seen a doctor instead,” he said.
Jeff’s situation is common, Purchase, the harm reduction advocate in Duluth, said. People who check in to get a wound treated often have other issues that need medical attention. But medical providers lose that opportunity to take care of multiple issues when people avoid treatment.
Most hospitalizations associated with drug use are for bacteria that’s gotten to the wrong places, Kelly said. Sepsis, for example, is bacteria in the blood. If bacteria gets in bones, people may need life-altering spinal surgery. Treating these types of bacterial infections takes steady, persistent care, Kelly said.
One common approach involves administering six weeks of intravenous antibiotics. That’s not a huge issue for people with insurance, stable housing, and support systems like family, he said. But for those without resources, it means they’re stuck in the hospital. If they leave, they’re usually not counseled on other ways to treat their infections, such as oral antibiotics. These aren’t as effective, but they’re better than nothing, Kelly said.
When bacteria gets to the heart, it can cause life-threatening endocarditis and usually requires surgery. That’s the condition that caught up with Rachel Embrey, after a long period of injecting drugs. She’d already grown alienated from the medical system; Embrey almost lost her right arm, she said, after leaving a hospital in California against medical advice.
“After being treated a certain way and when I was younger, I would say, ‘screw you, I’ll just go,’” she said. “I’ve seen people with maggots in open abscess wounds because they refused to go to the hospital because of how people treated them.”
Now in her late 30s, Embrey is a cook at Bar La Grassa and a mother of three. And while she’s in treatment for opioid-use disorder, she’s battling related health problems. She spoke to Sahan Journal from the University of Minnesota Medical Center, where she was waiting for surgery to address her endocarditis. Embrey said her best friend died of the same condition.
Solutions
It’s a familiar experience for anyone who has ever landed in the emergency room: A doctor in a white coat rushes in, drops their name, skims the patient’s chart, and starts firing off questions.
When Ryan Kelly meets a new patient at M Health Fairview University of Minnesota Medical Center, he’s dressed casually, sometimes wearing a Minnesota United jersey, and his greeting goes like this:
Dr. Ryan Kelly
The hospital is a hard place to be for any patient, but especially for people who have been mistreated or faced stigma or bias or racism. And that’s often even worse for people who self-medicate with alcohol or drugs.
“My name is Ryan Kelly, and I’m an internal medicine doctor; however, I’m also a patient advocate. The hospital is a hard place to be for any patient, but especially for people who have been mistreated or faced stigma or bias or racism. And that’s often even worse for people who self-medicate with alcohol or drugs. My job is to help you feel better and hopefully develop some trust so that I can work with you to come up with some goals and help you meet them once you leave.”
That’s how Jeff, Polz, and Embrey met Kelly, as part of the program he and Pham started. It’s officially named “The Hospital Medicine Addiction Service at M Health Fairview University of Minnesota Medical Center”—but patients don’t have to seek out the program. Kelly or another addiction expert meets every patient who is admitted to the hospital for an acute medical problem and who also uses substances. These practitioners serve as an advocate and liaison between the patient and the rest of their medical team.
That day in June when his back was aching, Jeff took so much fentanyl that he was unsure he could breathe, and he finally asked people in his house to call an ambulance. He landed at Fairview and met Kelly.
“This hospital experience has been exceptional,” he said from his bed. “I ask them every day, ‘You’re not about to discharge me?’ They let me know that they’re not going to get rid of me until I’m well and I have a safe place to be. Which is really cool because I don’t feel like my living situation was safe anymore.”
When Sahan Journal visited Jeff, he was still dealing with multiple health challenges. In addition to his back pain, Jeff is receiving intravenous antibiotics for a heart infection. He’s also switching from methadone, a medication used to treat opioid addiction that requires going to a clinic every day. He’ll now take suboxone, a medication that can be self-administered from home. He’s also working with a social worker to find a better living situation, and getting help reconnecting to a psychologist.
The team also offers culturally specific care: If someone identifies as Native American, for example, the team offers to help with the ritual of smudging—which includes burning sacred plants and natural materials. Caregivers will go so far as to turn off the fire alarms in the room if the patient is too sick to go outside.
The program apparently makes such a difference that some substance outreach workers call ahead to make sure that an addiction specialist will be there to offer reassurance—sometimes in the waiting room. Kelly is now one of seven doctors who work once a week to provide daily coverage. A handful of hospitals in the Twin Cities and Duluth operate similar programs. Ultimately, Kelly believes it will reduce the number of patients who leave the hospital against medical advice.
Patients have noticed changes, too. Abu As-Sidiq works with people with addiction at Twin Cities Recovery Project. Years ago, he left a Minneapolis hospital when doctors treated him like he was drug-seeking, he said. But when he recently took a client with addiction there, he was so impressed with the care that he complimented the nurse.
It’s taken a lot of work to get to this point, Mustapha pointed out.
“When it comes to people leaving against medical advice or being discharged against medical advice,” Mustapha said, “it is more complex than people want it to be, and requires us to engage with complexity. We can’t pretend it’s simple.”
Who pays for bad medical treatment?
It’s expensive to treat patients who are addicted to drugs. But it’s also expensive to treat them badly.
When people leave early, they’ll often return to a different medical system, said Mustapha, the chief equity strategy officer. This creates inefficiencies and extra costs for the medical system. Just retaking the initial screening tests in a different health system takes up a lot of resources, she said.
The increased health risks the individual experiences may be seen as a “soft cost” to the hospital system, Mustapha added. “But to the patient, those are real costs.”
Despite the apparent benefits for everyone in this care equation, funding such programs presents a huge challenge, she said.
“There’s no insurance company that is going to say, ‘Yeah do that, that’s the work we want you to do.’ The system of care provision isn’t supporting health care systems to address holistic patient needs.”
With too few programs, and no clear pathway to funding more, many patients fall through the gaps. That leaves harm reduction workers to fill in on the streets. When people resist a hospital visit, Purchase resorts to taking pictures of their wounds and sending them to Glanzer, the former nurse, for an informal consultation.
For now, the rewards for successful care may be smaller and more personal: Jeff has been talking about moving on from drugs and going back to school to pursue his passion for science and space.
“It’s been a long time since I’ve felt this way,” he said. “This place has had a lot to do with it.”
For the first time during a hospital stay, Jeff said he feels hopeful.
