“I still can feel the sickness”: Withdrawal experiences of people on Methadone Maintenance Treatment

Abstract

Introduction:

Opioid withdrawal is a regular occurrence for many people who use illicit opioids (PWUIO) involving acute physical and psychological pain. Yet, there is very little data on the withdrawal experience of people in methadone maintenance treatment (MMT) and almost none from the patients’ experience. Learning more about patients’ withdrawal experiences can help to inform policies and practices that are better suited to address withdrawal and may improve patient satisfaction as well as uptake and retention.

Methods:

This article is based on 29 semi-structured interviews with people who use illicit opioids who reported recent withdrawal experience. The study conducted interviews remotely via Zoom between April and August 2022 and later transcribed them professionally. The study team then coded data thematically using Atlas.ti, based on a combination of inductive and deductive coding strategies and informed by the literature and study aims.

Results:

Participants described withdrawal as a significant issue that negatively impacts their treatment experience and increases the likelihood of treatment cessation. Their accounts of withdrawal were complex and often involved multiple factors; however, feeling underdosed and missing clinic dosing hours were seen as important vectors that led to their withdrawal experiences. Importantly, participants framed feeling underdosed and missing clinic dosing hours as institutional problems, resulting primarily from clinic policies, practices, and culture rather than from patients’ decisions or individual behavior. Specifically, they cited restricted access to take-home doses, limited hours of operation, and a punitive focus on complete abstinence as factors that made withdrawal difficult to avoid.

Conclusions:

Patients’ accounts demonstrate a disconnect between providers’ focus on promoting complete abstinence and patients, who were often using MMT for more pragmatic reasons that did not include complete abstinence from all drugs. These findings support growing calls for the integration of MMT into the mainstream healthcare system by making it available via prescription from office-based medical settings and dispensed through pharmacies.

Introduction

Opioid withdrawal is a regular occurrence for many people who use illicit opioids (PWUIO) and is associated with overdose and less safe drug use practices (Bluthenthal et al., 2020; Frank et al., 2023; Kerr et al., 2013; Mateu-Gelabert et al., 2010; Phillips, 2016). However, there is very little data on the withdrawal experiences of people in Methadone Maintenance Treatment (MMT) and almost no current studies describing patients’ perspectives on withdrawal (Cohen et al., 1983; Dyer & White, 1997). This omission may be due in part to a belief that withdrawal is not a problem in opioid substitution programs like MMT where patients are provided with a daily dose of opioids. Yet, patient-authored scholarship, such as the “Methadone Manifesto” as well as literature examining the pharmacodynamics of methadone make clear that many people on MMT do still experience withdrawal symptoms (Dyer et al., 1999; Dyer & White, 1997; Simon et al., 2022; Sue et al., 2022; USU, 2021). Moreover, the increasing proliferation of fentanyl, the use of which is associated with greater opioid tolerance, has likely made addressing MMT patients’ withdrawal symptoms more difficult (Cook et al., 2021; Sue et al., 2022).

In the U.S., federal regulations restrict methadone’s availability as a medication for Opioid Use Disorder (OUD) to specialty clinics known as opioid treatment programs (OTPs) thereby isolating methadone treatment from the rest of the health care system (SAMHSA, 2024b; Substance Abuse and Mental Health Services Administration, 2020). Patients must attend these clinics and take their medication under the observation of clinic staff (Krawczyk et al., 2020; Krawczyk, Joudrey, et al., 2023; Krawczyk, Rivera, et al., 2023). As patients accumulate time at the clinic and test negative for illicit opioids, they are provided with “take-home doses” of methadone to be used on days when clinic attendance is not required. This system has led to high rates of patient dissatisfaction and corresponding low rates of treatment uptake and retention, leaving many without access to this life-saving treatment (Frank, 2019; Frank et al., 2021; Krawczyk, Joudrey, et al., 2023; Krawczyk et al., 2022; Krawczyk, Rivera, et al., 2023; Methadone, 2024; Simon et al., 2022; Solomon et al., 2021).

However, individual OTPs also maintain substantial autonomy within this system (Englander et al., 2024; Krawczyk, Joudrey, et al., 2023; Suen et al., 2024). For example, while the Substance Abuse and Mental Health Services Administration (SAMHSA) stipulates how often and under what circumstances take-home doses can be provided, individual clinics can adopt stricter (but not less strict) policies if they choose (Krawczyk, Joudrey, et al., 2023; Methadone, 2024; Meyerson et al., 2022). This was demonstrated recently when many OTPs chose to ignore SAMHSAs policy shift towards allowing (and encouraging) greater access to take-home doses (Meyerson et al., 2024; Meyerson et al., 2022; SAMHSA, 2024a). Similarly, while SAMHSA provides individual OTPs with recommendations on how to determine dosing schedules and patients’ eligibility for take-home doses, clinics have wide latitude to determine which patients meet those standards (Frank, 2019; Meyerson et al., 2022; Suen et al., 2024). Thus, while there have been recent attempts to incorporate a more patient-centered approach into MMT–the complicated mix of federal, state, and clinic-level policies, along with longstanding cultural practices and beliefs in OTPs, has made implementation challenging (Meyerson et al., 2022; Simon et al., 2022; USU, 2021).

Understanding the reasons that people on MMT experience withdrawal is particularly important because of research showing that for many patients eliminating withdrawal is one of the primary benefits of MMT, and one of the main reasons for using it (Frank, 2018; Mayer et al., 2020). Studies have also linked the intensity of withdrawal symptoms to dropout in MOUD programs (Soyka et al., 2008) and shown that lower doses of methadone are associated with decreased retention in MMT while higher doses are associated with increased retention (Mohamad et al., 2010; O’Connor et al., 2020). Thus, patients who continue to experience ongoing withdrawal may be more likely to discontinue treatment which is associated with greater risk of overdose and all-cause mortality (Caplehorn et al., 1996; Caplehorn & Drummer, 1999; Davoli et al., 2007).

People on MMT are also a diverse and often misunderstood population (Frank, 2018, 2020) and finding solutions to their experiences with withdrawal may require out-of-the-box solutions that diverge from MMT’s traditional focus on complete abstinence. For example, research shows that many, and perhaps most people on MMT use illicit drugs (findings range from 33% - 75%) (Blum et al., 2014; Davstad et al., 2007; Dobler-Mikola et al., 2005; White et al., 2014), and that many report being uninterested in eliminating all of their drug use (Dennis et al., 2020; Frank, 2018; Millson et al., 2007; Strike et al., 2013). Instead, such patients report that MMT enables them to use fewer drugs without quitting entirely, to quit using some drugs while continuing to use others, or simply to use in a safer and less chaotic way in part by avoiding the cycle of withdrawal and risk-involved behavior that accompanies dependence on an illicit drug (Frank, 2018).

Decades of research demonstrate the benefits of MMT including reduced rates of overdose, all-cause mortality, criminal legal involvement, and HIV/HCV transmission, as well as helping people who use drugs to do so in a safer and less chaotic manner (Joseph et al., 2000; Nolan et al., 2014; Santo et al., 2021; Sordo et al., 2017; Stone et al., 2018, 2020). Yet, it is also unpopular with many patients and people who use illegal opioids (PWUIO) who are not in treatment (Frank et al., 2021) and maintains consistently low rates of use and retention (Krawczyk et al., 2021; Proctor et al., 2015; Proctor et al., 2019; Stone et al., 2020). Learning more about patients’ withdrawal experiences can help to inform policies and practices that are better suited to address withdrawal and may improve patient satisfaction as well as treatment uptake and retention. As such, this article examines the withdrawal experiences of people on MMT to better understand the etiology of withdrawal in MMT programs and its impact on patients’ treatment experiences.

Methods

Sample and recruitment.

This article is based on data collected from 29 semi-structured interviews with PWUIO. Study inclusion criteria specified that participants be at least 18 years old and speak English as well as having reported current or previous experience with MMT, and having experienced opioid withdrawal at least once during the past 30 days. Participants were also required to provide informed consent. There were no specific exclusion criteria. Interviews were initially conducted with 31 individuals, however two were discarded because they did not meet the study criteria. The New York University Langone Institutional Review Board approved this study.

Participants were recruited using a purposive strategy from an ongoing longitudinal parent study that examines overdose risk management among PWUIO in the era of Naloxone (Overdose Risk Management and Compensation in the Era of Naloxone (PIs: Bennett and Elliott)). Participants in that study were recruited using a Respondent-Driven sampling strategy using “seeds” distributed equally across the five New York City boroughs. As such, participants were all located in the NYC area and received MMT services at a variety of OTPs located throughout the city. Participants in the parent study had the opportunity to consent to be contacted for future research studies, and those who did so, who also met the inclusion criteria, were contacted by email and/or text and asked if they were interested in participating in an additional interview that would seek information on themes that were similar to those in the original study.

Data Collection

Dr. Frank conducted 60 minute interviews remotely by using Zoom. Audio was recorded for all interviews; video was also recorded when participants indicated that they were comfortable with recording video (approximately half). A professional transcription service transcribed the audio. All participants provided informed consent and are referred to by pseudonyms. Participants were compensated $50 cash (through Venmo or Cash App) for their time at the completion of each interview.

The interview guide was designed based on a combination of the study aims and previous literature on PWUIO and people with experience of MMT. Domains included: substance use history; treatment history; treatment motivations and goals; withdrawal experiences while on MMT; withdrawal and risk behavior; and questions about overdose and use of naloxone.

Interviews were conducted using a situated approach based on Dr. Frank’s lived experience in MMT and using illicit opioids. Situated approaches acknowledge the positionality of the researcher and strive to be transparent about those relationships rather than to eliminate bias (Haraway, 1988). Dr. Frank disclosed his own status as someone who has used illicit drugs and who is currently in MMT to participants. The authors believe that by disclosing Frank’s shared history with participants, he was able to develop a level of comfort and trust that facilitated more robust and honest conversations and a richness of data that would not have been possible otherwise. Situated approaches, and other forms of insider and community-participatory research, are particularly useful when engaged in research that examines marginalized populations (Parson, 2019) such as people who use illicit drugs who often report feelings of mistrust towards public health and substance use researchers (Goodman et al., 2018; Greer et al., 2019; Simon et al., 2021; Simon et al., 2022).

Analysis

Interviews were coded using Atlas.ti using a thematic approach that aimed to organize data into meaningful categories based on the aims of the study and existing literature (Maguire & Delahunt, 2017; Vaismoradi et al., 2016). Categories included: experiences with withdrawal in MMT; perceptions of the causes of withdrawal in MMT; relations/experiences with providers; views on take-home doses; dosing schedules and withdrawal; strategies for relief from withdrawal; withdrawal and risk behavior; leaving or avoiding MMT; and others. Frank primarily completed coding, but the study assessed reliability at multiple points in the analysis based on discussions with co-investigators Bennett, Elliott, and Cleland and in-line with practices established by similar qualitative, exploratory projects (Linneberg & Korsgaard, 2019; Williams & Moser, 2019).

Results

We discuss the following themes in our analysis: Withdrawal on MMT; Reasons for withdrawal on MMT, with a specific focus on feeling underdosed and missing clinic dosing times; and frustration, disengagement, and leaving treatment.

Withdrawal on MMT

Our sample of 29 participants was 55% male (n=16), 41% female (n=12), and 4% (n=1) who did not disclose their gender. 45% identified as white (n=13), 27% identified as LatinX (n=8), 24% identified as Black (n=7), and 3% did not disclose their race (n=1). Participants’ average age was 41 (though one did not provide their age).

Among the 29 participants, most (n=25, 86.3%) reported having experienced withdrawal while in MMT; however, participants were mixed in their descriptions of withdrawal’s frequency and intensity. For some (n=4, 13.7%), it was relatively infrequent and mild, only occurring when, due to unexpected circumstances, they arrived at their clinic later than normal and started to feel mild symptoms before dosing. For example, the following participants explained:

“There’s been periods of time where I’ll be hovering [on the edge of feeling withdrawal], going to the clinic at let’s say at 9:00 AM all the time, consistently. Then there’ll be a day where I’ll wake up and we’ll be running late and then it’ll be twelve o’clock, so I’ll start feeling a little crappy and that’s really it.”

-Faith (29, white female)

“Not really [I don’t feel withdrawal often]. Like if I do, it’s very rare. It’ll just be like, sometimes it’ll be like in the morning, I might feel a little weird but like for me personally, I’m normally pretty good really.”

-Eli (29, white male)

Yet, most described their withdrawal symptoms as more severe and often occurring on a regular basis, as the following responses describe:

“[I get withdrawal] plenty of times. In the middle of the night, once I was already asleep, I’ll wake up with chills and back spasms and stuff. So, I already knew what was going on by the time it was time to dose. I was ready.”

-Jolene (33, LatinX female)

“[I get withdrawal] maybe twice a week, maybe once every two weeks. Once or twice every two weeks…… I’ve gone through withdrawal on heroin. But, you know, I still can feel the sickness [on methadone]…. The sickness might not be as bad, but it would be good if you had nothing.”

-Walter (58, Black Male)

Thus, withdrawal experiences while on MMT were common among participants, and many reported feeling withdrawal regularly.

Reasons for withdrawal on MMT

Participants’ descriptions of their withdrawal experiences were most often complex and not easily reducible to a single cause. However, feeling underdosed and/or missing clinic days were the most commonly reported themes.

Feeling underdosed

Participants described feeling underdosed as an important part of the reasons they experienced withdrawal. They reported several issues that could negatively impact their dose including the type of methadone used by their clinic (several mentioned ‘cherry liquid’ being considered weak; this aligns with qualitative research showing that many people experience the Methadose, ‘cherry liquid’ as weak (Greer et al., 2016; McNeil et al., 2015)), their individual metabolisms, and various physical ailments. Yet, in most cases, feeling underdosed was closely linked to illicit drug use with patients reporting that using illicit drugs increased their tolerance and made it more difficult to find a stable dose of methadone. For example, Tuesday, reported:

“Yeah, I think I’m on a good dose if I don’t use, you know, I can’t keep using and stay on the dose, because like I said, [the drugs are] cut with like a lot of pills and stuff. Your body gets used to the pills. The dose doesn’t seem like it’s good, but that’s because I’m using, you know what I’m saying?”

-Tuesday (48, white female)

Some participants noted that avoiding withdrawal was particularly difficult in the last few years because of the proliferation of fentanyl–which is more potent than heroin (Armenian et al., 2018; Gill et al., 2019; Hill et al., 2020)–and has increased peoples’ tolerance to opioids. As participants stated:

“You have to be on a super high dose in order to cater to the fentanyl withdrawal…. I would have to be upwards of 100 [milligrams] to even have some relief.”

-Lucia (38, LatinX female)

“That’s just because I guess like whatever they are cutting the heroin with these days [that] I still get slight withdrawals. It’s like the methadone doesn’t beat 100% of it. It doesn’t. I still have a mental fight and then I’d be sweating. I break out in these cold sweats that last for a few and I’ll have to get a towel and wipe and I’m like ‘God damn!’”

-Danny (53, black male)

Although some patients blamed themselves for using drugs and thereby continuing to experience withdrawal symptoms, most framed the issue as an institutional problem resulting from clinic dosing polices and practices which, they argued, failed to eliminate their withdrawal symptoms and incentivized continued illicit drug use. The following participants explained:

“That’s I guess some of the reason [why people on MMT continue to experience withdrawal], that your dosage isn’t high enough. But they don’t want to raise you because supposedly it’s too high for you or whatever the case. That happened to me at one point. So I was using again to cover for what wasn’t being covered. And if they would have just raised my dosage, I wouldn’t have had some of the problems that I did have.”

- Jolene (33, LatinX female)

“[When you start MMT], it’s going to take you weeks before you’re on 100 [milligrams]. So now you’re still on the program trying to do that and then you’re still on the street trying to mix everything so you get to a stable dose. Then you’re just dealing with this extra now because your program people are telling you, ‘You’re not trying, you’re not trying.’ It’s a lot, it’s extra.”

-Lucia (38, LatinX female)

Some participants reported asking their counselor for help. However, in most cases they described the institutional response–which usually consisted only of an admonition against drug use–as unhelpful. Participants also reported that treatment providers used patients’ continued drug use as a justification for denying their requests for dose increases. Although some patients did report getting their dose raised, often after considerable effort, in most cases doses were only increased by small amounts that had little or no effect on their withdrawal symptoms. For example, participants stated:

“Yeah [I asked for help], but it never helped me, like they never put me up on a dose in a way that will help me. No, not at all. Well, they said you know, ‘you can’t do it [illicit drugs]’ at all, you know, and they would tell me ‘just try again’. The other week, it was just so frustrating, they finally raised it twice. And they raised it by [only] five milligrams and I didn’t even feel that.”

-Caitlin (30, white female)

[I talked to my counselor] plenty of times. And they were trying to say [no] because my urines were dirty and I’m trying to explain to him, well, my urine wouldn’t be as dirty if you guys could just give me one [a dose increase].”

- Jolene (33, LatinX female)

Thus, participants described treatment as operating within a circular logic whereby patients who felt underdosed continued using illicit opioids to avoid withdrawal symptoms, an activity that was, itself, seen as justification for denying their requests for dose increases.

Participants also rejected the claim that they engaged with MMT to become completely abstinent from all drugs. Rather, many of their responses aligned with literature that positions MMT as a pragmatic strategy, used by patients in a variety of ways including as a harm reduction strategy for avoiding withdrawal, overdose, and the need to use illegal opioids every 6-12 hours (Frank, 2018, 2020). As one study participant stated: “I used methadone to reduce my street intake, so that I didn’t have to depend on getting it [heroin] every day,” or as another bluntly put it “I mean, fuck abstinence, for me it was just a money saver.” As such, clinics’ practice of linking dose increases to expectations of abstinence was experienced by patients as frustrating, counter-productive, and misaligned both to their treatment needs and the realities of their lives. For example, when particpants were asked if the dosing policies negatively impacted their treatment goals, they replied:

“I think they get invasive, like when it comes to, why aren’t you doing this, and then they want to start threatening you just because we use [drugs]. We have normal lives too, laundry, we have families, things happen to us too… They want me to stop completely, which is great but it’s going to take time … - I walk out my door and they’re [drug sellers are] right there too. [If I have] A bad day and I’m only on my dose for two weeks, hey, I might get a bag, and now I’m set back.”

- Lucia (38, LatinX female)

“You’re going there for methadone maintenance because you want to get off of opioids. You’re not going there, you’re not saying ‘Hi, I want to get off of all of drugs. When you go in and you enter you say I want to get off of opioids. If you’re coming up hot in your UA for cocaine, you’re going to punish me for that? I never said I wanted to get off cocaine, I said I wanted to get off opioids, so who are you to tell me that? You know what I’m saying?”

-Thomas (54, black male)

Some participants also reported having their dose reduced as punishment, often for missing clinic days. They described being treated unfairly by clinic staff and perceived many of the decisions made by providers as based in a desire to punish people who have or do use drugs rather than from a sincere assessment of the patients’ healthcare needs. They stated:

“But [patients also experience withdrawal] because of the facility. Let’s say I have a weekend, [and] I go visit my kids up-state, they’re going to reduce me 10 milligrams because I didn’t come that weekend!? You have all types of stuff..”

- Lucia (38, LatinX female)

“They cut your dose literally as much as they feel like. Church [participant’s friend], when he went there they didn’t like him, because -- just because he is emotional and they treat him like shit. He has a hard time like hiding his emotions. They were like, they would have dropped him from 200 to 30, yeah, just for missing four days. And then I went in there [with Church], and he kissed ass and called the lady ‘ma’am’, and she was like “since you’re so sweet I’m only going to drop it down to a 100”. And I was like, ’Oh, is that your medical opinion?’”

-Doreen (26, white, did not disclose gender)

Thus, patients described underdosing as one of the main reasons people continued to experience withdrawal in MMT. Yet, their responses focused primarily on how clinic practices, policies, and culture – such as refusing to provide dose increases to patients who were using illicit drugs and reducing patients’ doses as a form of punishment – made withdrawal difficult to avoid for many patients. Indeed, such policies forced participants to choose between regularly enduring withdrawal or using illegal opioids to self-manage withdrawal symptoms. Their accounts also evince significant frustration at clinic policies which many saw as vindictive, counter-productive, and an obstacle to their ability to progress in treatment.

Missing clinic dosing times

Missing clinic dosing times was also an important theme in patients’ withdrawal experiences - both for patients who used illicit drugs and those who did not. For example, the following responses from participants who did not use illicit drugs show how everyday occurrences, like sleeping later than expected, could lead to a missed dosing time and thus, withdrawal. For example, participants reported:

“Yeah, so there were days where–the whole time I was on the program in New York City I was working and at the age where I would wake up late–and I would [have to] choose to either be late to work or to not make it to my methadone clinic. I would just go to work and not have anything for 24 hours.”

-Curtis (28, white male)

“[I got withdrawal] just from missing days [at the clinic]. From not taking it [methadone], you end up sicker the next day and it makes it harder to go on time again.”

-Angela (23, white female)

This was a particular problem for patients who missed a Saturday since many clinics are closed on Sundays and provide patients with an extra take-home dose when they come in on Saturday. Thus, patients who missed their Saturday dose had to wait until Monday morning for their next dose (a total of 72 hours between doses). As Vera Lynn explains:

“[I only get withdrawal] If I don’t go on Saturday and don’t get my Sunday bottles. It’s happened a few times. It was because I woke up late and they closed at 11:45AM.”

-Vera Lynn (36, female, did not disclose race)

As with participants’ responses about underdosing, patients sometimes blamed themselves for missing days, particularly if they used drugs. For instance, Ellen stated:

“I have to go six days a week right now until I earn my days. But I’m lazy, I don’t want to get up or if I have the money, I’ll buy the dope and I’m like, oh, I’m not gonna go to the program today. But really, I could plan on going, because if I go every day, I won’t be sick, you know? I should go every day.”

-Ellen (48, white female)

Yet, also reflecting participants’ comments on underdosing, most patients framed missed clinic days as resulting primarily from MMT’s institutional structure rather than patients’ individual choices. They noted that most clinics provide few take-home doses, particularly to patients who use drugs other than methadone, who often receive none (Kourounis et al., 2016; Meyerson et al., 2022; Pouget et al., 2015) and that clinics are usually open for just a few hours each day, often very early in the morning, and can be located far from where patients are living (Joudrey et al., 2019; Joudrey et al., 2022). Some also described how being homeless, or dealing with illness and disability, makes daily attendance even more difficult. For example, Sarah, a 26 year-old white female described the difficulties she experienced trying to maintain access to treatment while homeless and pregnant. She explains:

“Yeah, that’s something [the lack of take-home doses] I feel is hard. The program I’m in now, the clinic I go to, they’re really hard to get, the take home doses. And they don’t care. I live in Staten Island, and I go to VIP in the Bronx which is really far. Really, really far. And then when I was pregnant with my son, they still had me [come in everyday] and it was summer and then winter and I was very, very pregnant and I was very, very homeless.”

-Sarah (26, white female)

Sarah explained that despite a nearly half-day commute from the shelter where she stayed to the OTP, and even after providing a note from her doctor confirming that she should not be traveling so much, her clinic continued to insist on daily attendance. Moreover, Sarah’s OTP was open on Sunday, when many clinics are closed, meaning she had to make the commute seven days a week, every week. She also described a growing sense of frustration and feelings of helplessness based on her belief that her OTP’s policies made progress impossible, and that staff was unconcerned. She explains:

“I mean, those are the kinds of things that when you’re trying to do good, and you have real things going on, and they don’t care. It makes it really hard because things like that, it makes you fuck up, you know? [You feel like] “I am doing good. I’m doing good and it’s [still] not working, and nobody will help me, and nobody cares to help me with this, so what’s the point?”

-Sarah (26, white female)

Other participants also reported a frustration with OTPs whose policies were perceived as poorly suited towards addressing patients’ real-world needs, and their providers as cold and uncaring. For example, Juan, a 48-year-old LatinX male stated:

“I was in the Bronx and my clinic was in Greenwich [Connecticut] at that time. And then when it’s raining or snowing or storms sometime, some programs don’t care what’s happening.”

-Juan (48, LatinX male)

The stigma of methadone use, and the way it was experienced in family settings, also made it difficult for participants to attend their OTP consistently. For example, Caitlyn described how, when visiting her parents, she was unable to leave the house every morning without alerting her family to her participation in MMT. She explains:

“My family live in Long Island, so I would go out there and I couldn’t, you know–except for some of my family–I couldn’t let them know, you know, that I was on it [methadone]. And I would miss my dates. And it wasn’t because I missed my dates ‘cause I wanted to. It was you know, my family, I couldn’t let them know.”

- Caitlin (30, white female)

Participants also described how inflexible and punitive dosing schedules positioned them as having to choose between withdrawal or obtaining opioids illicitly. As Jason explains:

“The whole reason why I started on the dope was because I got in on a Saturday to the program, 10 minutes after closing time, which was 11:45AM, and they wouldn’t let me in, and I was freaking out. I had to go to work the next day and one of the people in the program, they were like ‘Well, just get a bag of dope and you won’t be sick’. And I never did it before. And I’m like, ‘For real? I don’t want to, but I can’t be sick.’ And that’s when I started sniffing it. I would have never done it [If the clinic had let me in], exactly. I would have never done it.”

-Jason (31, white male)

Thus, missing clinic days were seen as an important part of why patients experienced withdrawal. As with feeling underdosed, most patients framed the issue as an institutional problem related to MMT’s inflexibility, insistence on patients’ complete abstinence, and often-punitive approach to treatment. They were particularly critical of limited dosing times and restrictive access to take-home doses, the combination of which, they argued, made it nearly impossible to avoid missing dosing appointments, and thus withdrawal.

Frustration, disengagement, and leaving treatment

Perhaps ironically, one result of the unstable treatment environment that patients described was that some intentionally kept their dose low, despite believing themselves to be underdosed. Participants described this as a protective strategy, both because they feared providers’ ability to lower their dose as punishment (which would be more painful at a higher dose) and because they eventually intended to leave MMT. For example, participants stated:

“[Sometimes I think] Maybe I should just go up to like 200 mg…. But then it was just really daunting that like, fuck,, if I go through detox I’m going to be at like a really high dose. It’s going to take me like a really long time to taper off of it. That’s not what I want I just want it [MMT] to be over with.”

-Doreen (26, white, did not disclose gender)

“Sometimes I think that [that I’m underdosed] but then it’s the thought of going up more [that scares me].”

-Adele (50, black female)

As such, clinic policies facilitated withdrawal, not only through punitive dosing and take-home policies, but also by maintaining a sense of fear among patients that ironically led some to intentionally keep their dose at sub-theraputic levels.

Similarly, participants described how frustrations with using both methadone and heroin, and still experiencing withdrawal negatively impacted their engagement with MMT. They stated:

“Yeah, I thought about it [leaving MMT], I thought about just leaving it alone and just do the dope, because I really don’t see the sense of doing both if I’m still going to feel, a little bad, I’m like what’s the sense.”

-Perry (55, black male)

“Sometimes [I think the clinic rules make it likely that I’ll leave treatment], yeah. Because I’ll continue to use, you know? Yeah. And then like eventually I’ll stop going to the program.”

- Ellen (48, white female)

Thus, patients reported significant frustrations with the ways that clinic policies negatively impacted their treatment and lives and specifically emphasized the absurdity of using both heroin and methadone while still feeling withdrawal. Consequently, many were planning to leave MMT.

Discussion

This article examines the withdrawal experiences of people on MMT. Findings show that withdrawal is a significant issue for many patients that negatively impacts their treatment experience and increases their desire to leave MMT. Patients noted that continued experiences of withdrawal while on MMT were not only unpleasant but also reduced the value of participation, since many utilized MMT largely to avoid craving and withdrawal.

Participants reported that feeling underdosed and missing clinic dosing hours were the most common precursors to withdrawal. However, most emphasized the role of OTP policies, practices, and culture–such as refusing dose increases and take-home doses to patients who used illicit drugs and providing limited dosing hours that were often early in the morning–in facilitating underdosing and missed dosing appointments. Thus, most framed their experiences with withdrawal as an institutional problem rather than one caused by individual behavior.

These findings align with a growing body of literature that is critical of OTPs and highlights the ways that clinic policies and practices negatively impact patients’ treatment (Englander et al., 2023; Frank et al., 2021; Krawczyk et al., 2020; Meyerson et al., 2022; Suen et al., 2022; Treloar et al., 2007). Studies have demonstrated the ways that OTPs often strict and punitive approach–particularly regarding take-home doses–restricts patients’ ability to maintain employment, attend school, and attend to family responsibilities as well as negatively impacting their health, quality of life, and ability to become more stable (Deering et al., 2011; Frank et al., 2021; Krawczyk, Joudrey, et al., 2023; Nolan et al., 2015; Strike et al., 2013; Treloar et al., 2007). We believe that some of these problems could be addressed, in part, through changes in federal regulations and clinic policies such as adopting improved dosing procedures–particularly during the induction phase of treatment–that better account for patients’ higher tolerance and the importance of eliminating withdrawal quickly (Buresh et al., 2022; Heikman et al., 2017).

However, our data also highlights a more fundamental problem with the way that MMT is conceptualized and practiced that suggests the need for more substantial changes. Specifically, our findings suggest that providers’ belief in abstinence as the proper goal of treatment plays an important role in their decisions about patient care. This aligns with previous research on MMT showing that many providers conceptualize abstinence-based recovery as the proper goal of treatment and advocate for a top-down approach that provides patients with little autonomy to set their own goals (Frank, 2019, 2021; Harris & McElrath, 2012). Qualitative and ethnographic work, including this study, makes clear that many people who benefit from MMT are not using it to achieve complete abstinence but for a variety of reasons including managing and reducing the harms and difficulties of active opioid use (Frank, 2018, 2020; O’Byrne & Jeske Pearson, 2019; Stancliff et al., 2012; USU, 2021). Moreover, many people on MMT do not conceptualize it through the dominant narratives of ‘addiction’ and ‘recovery’, but see it instead as a harm reduction tool and survival strategy for people whose drug use is criminalized (Frank, 2018). Despite this, our data shows that patients are regularly held to a standard of complete abstinence and that non-abstinent patients are routinely punished by denying them access to standard clinical tools such as dose increases.

Our data also show how this approach can put patients into no-win situations where they are not only unable to benefit from treatment, but are blamed by their providers and positioned as ‘not trying hard enough’. This aligns with work from medical sociologists that describes how the outcomes of structural and institutional forces are often positioned as resulting from poor individual choices in medical settings and particularly for people who use drugs whose ability to make rational choices is seen as inherently compromised (Campbell, 2012; Conrad, 1992; Frank et al., 2023; KatzRothman, 2012; Keane, 2002). It also aligns with patient-led scholarship that describes OTP’s punitive and abstinence-based approach, along with their power over patients’ ability to avoid withdrawal, as perpetuating a “culture of cruelty” (Simon et al., 2022; USU, 2021).

Importantly, there have been recent attempts to incorporate a more patient-centered approach into MMT that would better meet the needs of the full range of patients (SAMHSA, 2024a). Yet, because MMT is regulated in a way that gives individual providers wide latitude to set their own policies (Krawczyk, Joudrey, et al., 2023; Suen et al., 2024; Trusts, 2022)–and because the culture of abstinence-only treatment is deeply entrenched among MMT providers (Frank, 2019; Methadone, 2024; Simon et al., 2022; Suen et al., 2024)–they have only been intermittently adopted. For example, in March 2020 and in response to COVID-19, SAMHSA enacted policy changes allowing for take home doses of up to 28 and 14 days, including to patients who used drugs as long as they were seen as “stable” or “less stable” respectively. However, research shows that many clinics chose not to implement these policy changes despite a large body of research demonstrating their safety and benefits to patients (Figgatt et al., 2021; Krawczyk et al., 2020; Krawczyk, Rivera, et al., 2023; Levander et al., 2022; Meyerson et al., 2022). In fact, none of the participants in a recent Arizona-based study received the federally allowed 14- or 28-day methadone take-home doses (Meyerson et al., 2022) suggesting that changes in regulatory guidelines may be insufficient to create on-the-ground change in OTPs.

As such, the authors agree with growing calls for the integration of MMT into the mainstream healthcare system by prescription from office-based medical settings and dispensing through pharmacies (Adams et al., 2022; Krawczyk, Joudrey, et al., 2023; Massachusetts, 2022; Methadone, 2024; Simon et al., 2022; USU, 2021). This would eliminate OTPs monopoly on methadone provision (for OUD) and dramatically reduce the stigma and patient burden that characterizes much of the current approach. Providing MMT outside of the OTP system would also make treatment available to the many who report an interest in MMT but who are unable to abide by the OTPs’ strict regulations (Frank et al., 2021). Office-based MMT is already the norm in other countries, such as Canada, France, Australia, and the United Kingdom, and pilot studies have demonstrated its feasibility in the US (Englander et al., 2024; Merrill et al., 2005; Trusts, 2023).

Limitations

This study has several limitations. First, our sample was chosen using purposive sampling, based on people who reported experiencing withdrawal at least once in the past 30 days. As such, it is not a not a random sample of people on MMT and should not be generalized to the larger population of people on MMT. Similarly, our sample is from the New York City area, where harm reduction services are more readily available than in other parts of the US and methadone clinics are comparatively more patient-centered than in many other states. Thus, patients living in places where clinics are stricter may demonstrate even greater difficulties than the ones described in our study. Yet, we do not believe that these limitations substantially affect this papers’ findings.

Conclusion

These qualitative data add to the literature demonstrating the substantial difficulties that patients encounter in MMT, often despite benefiting from treatment (Joudrey et al., 2019; Suen et al., 2024). Moreover, they add to the literature showing misalignment between the way the MMT is conceptualized and practiced by providers, which often focuses primarily on the promotion of complete abstinence, and the more practical ways that it is used by patients (Frank, 2018, 2019; Methadone, 2024; Simon et al., 2022; USU, 2021). This disconnect negatively impacts patients’ treatment experience and increases their likelihood of treatment cessation as demonstrated by MMT’s consistently low rates of uptake and retention (Frank et al., 2021; O’Connor et al., 2020; Stone et al., 2020; Suen et al., 2024; White et al., 2014). MMT can be transformative in the lives of people who use illicit opioids, and indeed, it has been for some of this papers’ authors. However, if it is to meet its potential as a meaningful public health intervention, it must be designed to meet the full-range of patients’ needs and not just those whose treatment goals align with the abstinence-based focus of most providers.

Highlights:

• Responses demonstrated that withdrawal is a significant issue for many people in MMT that negatively impacts their treatment experience and increases the likelihood of treatment cessation.

• Patients’ withdrawal experiences were complex and often involved multiple factors; however, feeling underdosed and missing clinic dosing hours were the most commonly cited factors in patients’ withdrawal experiences.

• Most participants framed problems with withdrawal as an institutional problem, caused primarily by the way MMT is conceptualized and practiced, rather than from the individual behavior of patients.