Jed* is 42, with an athletic build, a finely striped button-down and soft, worried eyes that meet mine reluctantly. I’m meeting him for the first time, in 2017. A crumpled tissue, offered by Michelle, our nurse, peeks out of his clenched fist.
When he was younger, Jed, was a professional skateboarder. But he had suffered horrifically during his upbringing in Upstate New York farm country. He lived under threat of beatings from a physically abusive and frequently drunk father, and was preyed upon by an uncle who visited and raped him repeatedly throughout elementary and middle school. His mostly absent mother had untreated schizophrenia. His sister was eventually diagnosed with bipolar disorder, and was rarely stable enough to be an ally. Jed had his first beer and cigarette at seven, freely offered by his dad, and often found alcohol an escape.
Skating helped. He found that it enabled him to “live in the moment” and turn off the intrusive flashbacks and worry—like when he got drunk, but without the negative consequences. Through skateboarding he mastered risky tricks, garnered respect from older kids, traveled for competitions in locations further away than his dad had ever ventured, and learned to test the edges of physical danger. He wrote a new story for himself—one in which he was in charge.
Jed had been on Suboxone for eight years. But he was vibrating with suppressed emotion, with daily thoughts of suicide.
It all fell apart when he suffered a serious skateboarding accident at the age of 21. The fall fractured his pelvis, ending his career. Without skating, and clearly facing many life challenges, Jed spent the next 14 years taking an increasingly diverse and high volume of whatever drugs he could get his hands on, ideally heroin.
He got Hep C from a shared needle. A few month-long stints at what he calls “shitty rehabs” only deepened his hopelessness. Individual and group therapy that was mandated after trouble with the law brought up enormous shame, another challenge to picking up work shifts, and no real solutions.
Suboxone changed his life, he says. Other changes in his circumstances undoubtedly helped, too. When he started taking Suboxone he was 35 and in love with Tracy*, who is also my patient. Tracy said she was also working on “getting clean,” and together, they were planning to open a food co-op. Jed managed to cure his hepatitis with treatment, which gave him some more daily energy.
When I met Jed last year, he had been on Suboxone for eight years. But he was vibrating with suppressed emotion and had scored a 27 out of 30 on his intake depression screen, with daily thoughts of suicide.
“It brings me right back; I feel like a piece-of-shit little kid.”
I didn’t understand. Their business was going great; they had secured a new investor and found a vocal supporter in the local town’s government. Tracy had had a scare when we investigated her worsening headaches and discovered a significant brainstem malformation. But surgery went smoothly and she just needed the occasional 5mg oxycodone to manage the pain.
It turned out that he had failed his urine screen—the first time this had happened in eight years of weekly testing—and was therefore being dismissed from his long-time doctor’s office.
He knew I could prescribe Suboxone at his current level—8mg twice daily—without interruption. But it wasn’t the loss of a prescription that had crushed him. Instead, he said, it was “being treated like a junkie for the first time in eight years. They didn’t believe me when I told them I didn’t take [Tracy’s] pills,” he told me. “I thought I’d earned some type of respect.”
He sounded defeated. He said he had felt like relapsing, and knew where to find dope, but had sequestered himself to bed for a few days instead.
“It just brings me right back; I feel like a piece-of-shit little kid.”
It is still common for abstinence-based practices to require urine toxicology screens at every visit. The results are used to decide who gets treatment—essentially retaining only those who are flawless, and providing a selection bias in favor of less sick patients.
I often see patients who have been dismissed from another practice for just one illicit THC- or opioid-positive urine screen. Even at a clinic in a nearby city that describes itself as “generous,” a two-strike urine policy is used to dismiss patients for a whole year.
This is both absurd and cruel when we’re trying to help people with so many personal struggles, who will almost always take some backward steps as well as forward ones. We should remember that urine screens are frequently inaccurate, giving both false negatives and false positives. And when providers dismiss patients for “dirty urines” we endorse a series of damaging alternatives to continued care. I would place these in three categories:
1. Chaotic or risky drug use and its direct consequences.
This may include exposure to different opioids—with fentanyl, for example, so prevalent in street-drug supplies. When we stop treatment we endorse the patient’s increased risks of acquiring Hepatitis C, HIV, cellulitis and abscesses, and developing increasingly resurgent endocarditis. We also endorse the enormous associated medical costs—of avoidable ICU admissions, for example, for sepsis.
2. The functional loss that rejected patients experience.
Buprenorphine is a remarkably stabilizing medication. In the eight months since our clinic opened its doors, we have prescribed buprenorphine to 392 patients, with a three-month treatment retention rate of 88 percent. Our staff has heard daily stories of first jobs in a decade landed, marriages salvaged, child custody earned, and poetry collections written. Stable Suboxone patients don’t experience the dangers and inconveniences of using drugs that are targeted by law enforcement. They don’t need to sneak away from their families to use or score, or to miss work because of withdrawal. Stable patients on buprenorphine bring their kids to fall parties and manage business teams.
3. The consequences of primary care neglect.
When we dismiss patients from a medical practice, we also endorse the progression of their unrelated conditions. We let our patients know that, because of their drug use, they do not deserve healthcare. I often find myself doing remedial primary care for people who have lost access to other healthcare due to “dirty urines,” or violations of other shameful policies. In these circumstances, I’ve found cervical cancer, wildly high blood sugars, systolic blood pressure in the 200s, and multiple unwanted pregnancies (an astonishing 86 percent of pregnancies in women with opioid use disorder are unintended).
All three of these consequence sets are particularly damaging to patients with substance use disorder who have endured adverse childhood experiences (the vast majority). Most of our patients have experienced: childhood abandonment by, or loss of, someone close to them; abuse or neglect by someone they should have been able to trust; chronic food or housing insecurity; and other traumas.
Refusing to care for these people is not only irresponsible from a public health perspective, but retraumatizing. It erodes the trust we work to build into our caregiving relationships. Even if we offer to continue other services, rejecting patients for buprenorphine alone greatly damages these relationships.
“You did a shameful thing and I think you should go buy heroin, but please come back for your Pap” is not a genuine offer of support.
In medical school we all recited a version of the Hippocratic Oath including the promise that, in the practice of our art:
“[We] will apply, for the benefit of the sick, all measures [that] are required… [We] will remember that [we] do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. [Our] responsibility includes these related problems, if [we are] to care adequately for the sick.”
We are now practicing this art amidst an epic American crisis. We must remind ourselves of the most basic purpose of our work: to keep people alive and functional.
We know that medication helps to do this. And we know that patients who revert to illicit drug use—usually exhibiting the very symptoms for which they sought help—continue to deserve access to medication.
At REACH we perform urine drug screens quite infrequently: monthly or less. We first make clear to patients that screens are never used as grounds for dismissal or negative changes in treatment—only as a way to obtain information, with their consent, which we can then discuss.
I usually tell patients something like, “I only care that the bupe is in there to protect my license,” because I’d want to know if it was never being taken. Patients are super-forthcoming about what they expect us to find. And if anyone “can’t pee,” we say, “That’s ok; we’ll get one next time,” which always gives them an out if they want it.
The results inform my practice. If there is no buprenorphine in the urine, for example, we talk about why not. There are numerous ways in which this discussion can go:
*Maybe it’s time to acknowledge that the person is not feeling ready for buprenorphine treatment and that we need to agree a new, more honest assessment of our current goals of care.
*Maybe they can’t afford to pick it up, and we need to talk about what can be done.
*Maybe the dose wasn’t adequate to quell cravings, and we need to consider a different dose.
*Maybe the particular formulation was intolerable (“I keep gagging orange,” is one complaint I’ve heard) and a dissolving tablet would be better than a film.
Our goal is to get treatment to everyone who wants it, making extra effort to get it to the patients most in need—whether or not that treatment is periodically interrupted by illegal or harmful drug use. As in other areas of medicine, illness should be a trigger for treatment, not for abandonment.
If a woman with diabetes had a blood sugar level of 300 mg/dl at an office visit, we would educate her, offer support for healthy food access, check renal function and make medication changes—such as a statin to protect her from the harms of high-circulating blood sugar on the blood vessels. Creating a policy of denying treatment when sugars are high, suggesting lunch at a nearby Dunkin’ Donuts, and offering to arrange dialysis when her kidneys fail would be grounds for a malpractice suit.
The fact that that scenario sounds so ridiculous, while denying OUD treatment because drug use is often seen as acceptable, reveals the overlay of Puritanical morality we must reject.
Whatever the reason, stopping his treatment for opioid use disorder would be unethical and medically irresponsible.
To return to Jed, let’s try a thought experiment. Assume for a second that Jed did take a few of his wife’s oxycodones (though actually I suspect it was a false positive, perhaps set off by his naloxone). Maybe he wanted to treat his chronic pain, or wanted that old feeling of escape. Maybe he simply reacted to a moment of hopelessness.
Whatever the reason, stopping his treatment for opioid use disorder would be unethical and medically irresponsible. He should be offered support: perhaps an increase in his Suboxone dose for a period of stress; perhaps better treatment for his depression; perhaps an increase in his visit frequency (but not his urine screenings!) to provide external accountability and build trust.
I actually saw Jed last week for our monthly check-in. He was eating a scone from the fresh collection donated by a local bakery every Monday. Tracy was with him. She hugged me on my way in and then gave us some space while she chatted with staff and tidied our messy rack of clothing offerings.
Jed will be meeting soon with our psychiatric nurse practitioner to discuss changing his antidepressant medication. Last week, he asked me for nicotine patches and gum, as he is aiming to quit smoking by the New Year. We adjusted his blood pressure medication, refilled his Suboxone and gave him a flu shot.
It was a normal and lovely visit.
*Names and some identifying details have been changed.