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possum-dyke · 2 years ago

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I'd love to share with you all my undergrad honors thesis! Warning, it's a long read but well worth it, especially if you're into harm reduction

Why do Chronic Pain Patients Use Opioids Outside of the Realm of Prescription?

December 21, 2022

Nadiya

With the guidance of mentors David Frank, PhD and Noa Krawczyk, PhD

Macaulay Honors College Public Health Honors Project

AbstractThis exploratory review aims to summarize the reasons why chronic pain patients have been using opioids not as prescribed. Review and analysis of Reddit posts revealed people’s reasons for not using drugs as prescribed, and yielded meaningful anecdotes about their stories. Results showed four overall themes, with one theme being patients not getting enough supply, either through underprescription, no prescription, or getting cut off prescriptions; one theme being issues with withdrawal, often linked to lack of information or various reasons for patients to DIY the process; one theme being blocked communication between doctors and patients, specifically focusing on stigma in the medical community against drug users; and the last theme focusing on the negative effect of national, state, and practice-based prescription guidelines. These can be summarized by one overarching theme of disconnect between patients and doctors. Recommendations can be made to improve guidelines and to train doctors better.

Background/Introduction/LiteratureThe use of opium as an analgesic can be traced back to the times of ancient Sumer, with references to it written on a clay tablet of medical preparations (Norn et al., 2005). Since then, opium and increasingly stronger opioids, including synthetic opioids, have been used in a widespread manner, primarily for pain management and for recreational use, as opioid euphoric properties hold similar levels of power as analgesic properties (Norn et al., 2005). Although there had been previous opioid “epidemics” such as the high level of Opioid Use Disorder following the Civil War, the most currently thought of opioid “epidemic” is the one that occurred in the late 1990s and early 2000s, whose dangerous aftereffects we are seeing today with the advent of fentanyl (Jones et al., 2018). A perfect storm of the medical institution starting to briefly acknowledge the importance of pain and the invention and widespread marketing of preparations like OxyContin, as well as the willingness of many physicians to prescribe of opioids, caused an increase in the rates of opioid use, unfortunately leading to dependence and overdose in some cases (Jones et al., 2018). These negative consequences caused a shift in the pendulum in the complete other direction, with more crackdown on prescribing doctors, crackdown on users, and low rates of prescription of opioids (Marchetti et al., 2020). By now, the CDC has put out federal guidelines about opioid prescription for doctors (2016 guidelines dealt with how much opioids can be prescribed and what risk factors can be considered in prescription) (Bohnert et al., 2018). Furthermore, states have set up their own guidelines to try to curb causing dependence (Soelberg et al., 2017). Also, private healthcare companies often have blanket rules or limits that either they won’t prescribe opioids or no more than a limited dose of opioids (Webster & Grabois, 2015). In theory this was to cut down on pill mills, where anyone could claim any injury for a prescription they could get multiple refills of (Kennedy-Hendricks et al., 2016).When reading this paper, it is important to note the different kinds of opioids mentioned.OxyContin, Norco, Lortab, and tramadol are all available by prescription but also on the street; in the US, heroin is only available on the street. Methadone and suboxone are forms of medication-assisted treatment (MAT); suboxone, which was mentioned more often in this research, is a partial opioid agonist which also often includes naloxone, an antagonist, in its preparation to block users from getting high on other opioids (Velander, 2018). Although mostly obtained via prescription, suboxone can be acquired on the street (Hswen et al., 2020). Kratom is a plant with opioid characteristics that while still often used for pain or euphoria, is most frequently associated with assisting with withdrawal symptoms or tapering off stronger opioids (Eastlack et al., 2020). It is not legal in all states or countries, but where it is legal, it is typically sold in headshops or online; it is never prescribed (Prozialeck et al., 2020).Another important concept that received several mentions in patient posts was withdrawal, which requires explanation. After some level of dependence, an opioid user will start developing withdrawal symptoms when they stop using (Kosten & Baxter, 2019). These will worsen over the duration of use (Kosten & Baxter, 2019). Symptoms include an agitated/anxious mental state, insomnia, sweats, chills, flu-like symptoms, cramps, diarrhea, nausea, and vomiting (Kosten & Baxter, 2019).

MethodologyIn this exploratory review and analysis, Reddit posts were analyzed to answer the question of why current chronic pain patients use opioids in an illicit and/or non-prescribed way to manage pain. The social media forum Reddit, through its subreddit r/opiates, was used to sort through posts that might be of relevance. The search term used was “chronic pain.” Inclusion criteria used when considering posts for analysis incorporated posts consisting of at least 5 words in the body, and if there was repeat posting, only first posting in order of the algorithm was counted. Non-prescribed use had to be present or heavily implied in the content of the post. The project defined non-prescribed use as use beyond the scope of a prescription, encompassing everything from using drugs bought on the black market to doubling the dose of a prescription or using non-prescribed supplements. At this point, 50 posts that matched criteria were collected.The posts were coded on Google Sheets using the following list of categories, which were picked after thematic analysis of the topic.Can’t obtain a prescriptionAlready dependent from previous prescriptions or non-prescribed useWant more after prescription but can't getPrescription too lowRan out of prescription earlyRaised toleranceOff label use of prescriptionAre using for recreational reasonsDon’t want to go to a doctorCan't afford a doctor/doctor doesn't take insuranceReceived shared pills from othersWere already using pre-pain,Want the high from a stronger drugAvoidance of dopesickness/withdrawal symptomsUse vs suicideNo illicit use mentioned (still not using as prescribed)On medication-assisted treatmentUse of kratom,Different route of administrationRelief from dopesickness/withdrawal symptomsFear/avoidance of painUsing from non-prescribed supply on top of prescriptionUse of non-opiate drugs mentioned,Doctor lowered/took off scriptNew or worsening chronic pain after withdrawal/abstinence (post-acute withdrawal syndrome)Use of heroin.Each category was given a code and these codes were marked next to posts that pertained to them. Then important quotes were gathered and several themes were identified, some stemming from criteria, and some from analysis.Limitations include the fact that posters could use other terms than “chronic pain” to describe their pain, and the fact that posts were shown in the order of Reddit’s proprietary algorithm. Another limitation is the lack of inclusion of “should I” posts, or posters who haven't yet made the jump but are asking about using their prescriptions in a different way or trying new substances. Another limitation involves the fact that this study does not take into account the people who would not be using Reddit to talk about their experiences, including, notably, many elderly individuals who may be a part of the target demographic.

Results

Quantitative AnalysisOut of 50 data points, here’s how many were counted positive for each category:Category Count

Can’t obtain a prescription 13

Prescription too low 11

Use of heroin 10

Are using for recreational reasons 9

No illicit use mentioned (still not using as prescribed) 9

Using from non-prescribed supply on top of prescription 8

Different route of administration 7

Want more after prescription but can't get 7

Off label use of prescription 6

Use of kratom 6

Use of non-opiate drugs mentioned 5

Raised tolerance 5

On medication-assisted treatment 5

Relief from dopesickness/withdrawal symptoms 5

Ran out of prescription early 4

Fear/avoidance of pain 4

New or worsening chronic pain after withdrawal/abstinence (post-acute withdrawal syndrome) 4

Use vs suicide 3

Doctor lowered/took off script 3

Don’t want to go to a doctor 2

Received shared pills from others 2

Were already using pre-pain 2

Avoidance of dopesickness/withdrawal symptoms 2

Can't afford a doctor/doctor doesn't take insurance 1

Want the high from a stronger drug 1

Already dependent from previous prescriptions or nonprescribed use 0

Qualitative AnalysisAnalysis of the Reddit posts revealed four umbrella themes:1. Patients aren’t getting enough medication to manage pain.2. Patients are dealing with issues related to opioid withdrawal/dependence/tolerance.3. Patients are not consulting with their doctors about their opioid use.4. Guidelines for prescription of opioids are not serving patients well.

Umbrella Theme 1: Patients aren’t getting enough medication to manage pain.Multiple Reddit users found that although they were getting prescriptions, the prescriptions were insufficient to their levels of pain. Some patients feel their doctors aren’t understanding their pain, and are acting out of a fear of overprescription.One poster described their frustration at not being prescribed opioids.“and what got me so pissed off, was when I talked to one of the docs he was saying “we really don’t want to use any narcotics as they’re dangerous and we want to keep you safe, if you have excruciating pain, you can have a small dose of norco once a day.” ”Self-management of pain medication is a strategy many use to allow for their low prescriptions. Here, one patient described using dietary changes to make their dose have a higher effect, in this case using grapefruit juice to potentiate the effects of opioids. (Nieminen et al, 2020)“It's gotten so bad that I've begun to starve myself most of the day and drinking mostly grapefruit juice to have my limited dose hit as hard as possible.” Others, like the next two posters, stretch their limited prescription, finding themselves in a conflict to take multiple doses to alleviate pain versus risking having nothing left to deal with a potential flare-up.“Try to keep it in the 15 - 30mg range per day so I don't max out my script in one week.”“I hate that so far today, I've taken 75mgs of oxy [Oxycontin], yet my back is still screaming at me. I hate that I only have one 15mg pill left, and I'm trying so hard not to take it just yet.”Many users found themselves unable to take prescriptions at all: “cant get doctors to help me for shit have to self medicate.”In some of these cases it is clear that the patients have already sought extensive care but still can’t get a prescription.“There's so much scaremongering about doctors overperscribing (sic) opiates, but I'm out here with a super fucked up back (dont want to get into specifics but its gnarly) and the xrays and MRIS to prove it and i still can't find a doctor to prescribe me anything stronger than naproxen.”“I've had a torn miniscus (sic) tendon for the past 7-8 years and none of the doctors I've been to will do anything about it. Doctors refuse to send me to pain management, their excuse is that I don't need it. I've taken it upon myself to medicate with the only pills that seem to work for it. (Oxy, Lortab)” For at least one patient, only mild or highly improbable solutions have been given.“every single doctor I've been to just gives me shitty NSAIDs and tells me to exercise”In some cases, doctors are cutting patients off their medications. One patient has been told that there is no cure and is therefore scared of being cut off their meds.“I’ve been told this “is it” for me, as after 6 years of treatment/surgeries there’s nothing left to do but treat symptoms, and I’m terrified I’ll be cut off my meds this year, it’s terrifying…..”This patient’s story shows a direct link between being cut off and buying on the black market.“I was prescribed quite a bit of opioids but I was cut off because it was just a general doctor and I had to go to the streets which eventually led me to suboxone [an opioid partial agonist used for withdrawal]”

Umbrella Theme 2: Patients have issues with withdrawal/dependence/tolerance and the way interactions with doctors about these topics have gone.One patient was worried that trying to taper off legally with suboxone would affect other prescriptions, and was crowdsourcing information instead of telling the doctor their fears.“I’ve bought subutex [same as suboxone] before and managed to get myself off it but I can’t get it this time. Would a doctor allow you to be prescribed subs while your already on other opioids prescribed?”Another patient is trying to crowdsource answers to their problem; they started off using legal kratom, but it wasn’t enough for the pain.“Now i tried to just come off morphine and jump on to kratom but my habit is too big and the kratom wasn't holding me plus it wasn't really putting a dent in my pain. I'm so fkn lost, i really don't know what to do at this point this seems insurmountable and i've just been crying all day.”One person feels they made a mistake telling their doctor. There are steep costs associated with suboxone for them, and they consider heroin to be more pleasant and cheaper.“Doctors refuse to help me. Even with my medical history , I made a horrible mistake of going for help in my most desperate moments of withdrawal, tried to get on subs [suboxone, an opioid partial agonist used for withdrawal], But said fuck it when I realized they wanted $16 every single day to dispense me a sub [suboxone] strip 6 days a week with only 1 take home for sundays. My dope [heroin] habit I could maintain on for only a little more money and it felt way better so why the fck would I get on maintenance?”Two patients likely weren’t given enough information about withdrawal. Withdrawal is seen as a “junkie” thing, so doctors don’t want to give their patients the impression they’ll get it (or don’t know much about it themselves), and patients don’t think it will happen to them so they don’t research it. (Rieder, 2017)“Only today it dawned on me what an odd coincidence it is I feel sick when I don't take it but I'm fine when I do. I've been using it continuously for the past couple days and today I woke up feeling like complete shit.”“Now my tolerance is so high I haven’t been taking as directed and taking the max dose. I ran out almost 3 days ago now. I am so tired, my legs and my arms hurt if I don’t move them, have the shits [diarrhea], headache, and all over feeling terrible [typical opioid withdrawal symptoms]. I’m assuming this is withdrawal but I feel so fucking awful.”

Umbrella Theme 3: Patients are not consulting with doctors about pain and opioid use.Patients were often found to be deliberately withholding information from their doctors for various reasons:“Like I said I hid it from my doctors, so I never really got to find out exactly what that pain was”At least one patient was scared that doctors would think they were lying for a prescription.“I tried to hide it from everyone. I was scared that doctors would think I was phishing [committing fraud/lying] for pain pills, and/or that my family would doubt my sobriety because of my behavior.”Rehab facilities often don’t let patients take any psychoactive drugs, and this person was rightfully worried that if she entered rehab, her meds could be taken from her.“She says she can't go to treatment because they'll take her meds for her illness (she collects SSI for her disability) and they could fuck with that as well.”There are often lengthy processes associated with trying to get specialists that put people off.“I've been thinking of trying to get a referral by my regular doctor to the nearest chronic pain center, to see a specialist and psychiatrist for specific pain-related treatment. In this country the doc has to write up my medical history, explain the current condition in a referral letter, mail it to the pain specialist, and if he deems it legit he'll mail me a form to fill to evaluate my pain levels. Which I have to mail back to expect a call back about a first appointment. You can understand that this is so convoluted it doesn't even make me wanna do it.” Doctors are often wary if a patient asks for a specific opiate, thinking they are trying to commit fraud.“As of now I have been to two docs who pushed me aside giving me 800mg Tylenol, it didn't do shit but I remember I had gotten a script of trammadol (sic) for a root canal and it made everything painless and easy but as soon as I said that to the doctor he immediately wrote another 800mg Tylenol script without hesitation and sent me on my way.”Many patients were scared of being marked as addicts due to withdrawal symptoms, other prescriptions, or being honest about recreational drug use. “Doctors see the addict mark on my history and treat me like a piece of garbage.”One patient regrets honesty with their doctor, who won’t prescribe to a heavy drinker. Although alcohol and opioids are synergistic, this patient is still in a lot of pain. (Cushman, 1987)“I went to the doc my sister goes too (sic) and told him about my drinking habits and the pain, he told me he won't prescribe any opiates for "fear of additional addictions" occurring.”Here, the patient knows they are labeled dependent, so they are scared that the “addict mark” will not let them request extra of their prescription.“And when I go in for my next appointment, if I mention that the 10mg dose is preferable do you think I'll run into any trouble for suggesting that now that I have been labelled as dependent?”The patient feels they can’t be honest about illicit use without fear of being cut off from their meds.“If I go to my doctor and come clean that I’m using oxy’s {Oxycontin] and heroin will the (sic) blacklist me from the prescription I’m on?”This poster is worried that coming clean about their opioid usage will cause their psychiatrist to stop giving them benzodiazepines.“I have no intentions of telling my psychiatrist because knowing her, she'd most likely just take away my benzo [benzodiazepine] prescription away and think the problem is solved. I'm almost 100% if I tried telling anyone else I wouldn't get taken seriously either, just like with all my other both physical and mental health issues, and it's not that dangerous of a drug anyway. I don't want to make the situation even worse for myself, like it's always happened before when I mistakenly trusted people, despite it being their job to help me”This poster is worried that if suboxone is on their record, they will be blacklisted from future pain medication prescription and is wanting to try to self-medicate withdrawal with kratom instead.“I’m thinking about using kratom as a substitute for suboxone. I don’t want to take subs [suboxone] because 1. i don’t want my family to know 2. i don’t want that on my health record as i struggle with chronic pain and it would hinder some medical treatment for sure”In this case, a doctor’s beliefs about marijuana use are getting in the way of evidence-based care; the patient has essentially been cut off after admitting to marijuana use and exhibiting vague symptoms.“Now when it comes to my doctor. I feel like the stigma behind my marijuana use has greatly affected my care. He thinks I’m addicted to marijuana which is absolutely ridiculous. I’ve had panic attacks before in the hospital (I’ve dealt with anxiety far longer than I’ve been using marijuana) and he attributes them to “marijuana withdrawals” like wtf. And more recently he’s completely cut out any opiate use in my care. I’ve had multiple times where I have bad chest pain episodes and I need to go to the ER but the only thing they will give is toradol and Tylenol which does jack shit. This has forced me to start going to my local hospital ER whenever I have bad pain cause I know it can be treated there properly then I could be transferred to my normal hospital.”

Umbrella Theme 4: Guidelines for prescribing opioids aren’t serving patients.In this case, the patient is unsure but thinks state or healthcare company regulations are applying a rule that results in insufficient care.“Idk if doctors in California specifically at kaiser [Kaiser Permanente, a healthcare company] can even still prescribe monthly pain meds I don’t care about being high anymore I want this pain to end.”Here, a GP is prescribing an insufficient dose because of fear of crossing guidelines, which could impact their licensure.“My doctor (not pain management doc, normal GP) won't go over 50 MME [morphine milligram equivalents] a day because they're scared of the 2016 CDC Opioid guidelines bullshit.”Many practices have pain contracts, which require opioid-receiving patients to give their word to do certain things to keep getting their prescription (Payne et al., 2010). Here, a patient is scared that because they will have six less than needed if they didn’t use extra, at their next count they or their doctor will get penalized.“My doctor does pill counts now, the amount I’m supposed to be coming in with is 12 and if I’ll only be left with 6, am I gonna be fucked [low counts might look like abuse or dealing]? I’m not abusing them in any way, and I’m scared that I’ll look like I am and fuck up my prescription or get my doctors narcotic license taken away or something. I’ve only failed one drug screening when I wasn’t taking my medication because (TMI sorry) I hadn’t shit in a week.”

Discussion In analysis of these posts, the most common overarching theme was patients feeling disconnected from doctors, from not being able to convey their level of pain and having it met, to being prescribed medications they don’t understand, to not sharing issues with their doctors for fear of judgment or non-prescription.. All four themes — insufficient prescription, withdrawal issues, patients not consulting with doctors, and prescription guidelines — often come down to issues with the medical institution or individual doctors. However, this is such a widespread problem among individual doctors that change must be made on the systemic level, for instance, during education.Insufficient prescription stories in the data can be narrowed down to three categories: patients with prescriptions who experience more pain than their prescription can help, patients who cannot obtain a prescription for opioids, and patients who are cut off from their prescriptions. In all of these sub-categories, there is a common theme of frustration with doctors not meeting patient needs. There is also a theme in the already-prescribed sub-category of using other strategies to make a prescription have more power, some of which are risky. Using other substances to potentiate the drugs, especially benzodiazepines and alcohol, can lead to overdose, and doubling up on doses to then run out can lead to a cycle of withdrawal (Knopf, 2020). In the never-prescribed subcategory, it is becoming clear that many patients who are seeking extensive medical attention are not getting the medications they need. In the cut-off category, getting cut off or tapered down without permission can precipitate withdrawal. In all, this umbrella category shows a pattern of denial of a patient’s agency in their own pain management process, and doctors should find better ways to monitor people’s pain and not assume the least effective methods will do the trick.Multiple issues come up with withdrawal precipitated by running out of opioids and self-precipitated withdrawal due to the desire to taper off. For instance, it is hard to obtain suboxone and when people do, it can be quite expensive (Hswen, 2020). Kratom can also run quite expensive, and oftentimes does not treat withdrawal symptoms effectively (Eastlack et al., 2020). In a lot of cases, patients aren’t able to utilize detox programs because they would have to be free from opiates, but either doctors aren’t providing helpful ways to get patients off opioids, or patients don’t feel comfortable approaching the subject with their doctors (Timko et al., 2016). Additionally, many patients are not adequately educated on withdrawal; it can take a while for them to catch on to the fact that they don’t have a nasty flu, they are instead in withdrawal from the prescribed opiates they take (Kearney et al., 2018). This would imply that in long-term opiate prescriptions, doctors need to do a better job of describing the near-inevitability of withdrawal, the signs and symptoms, and when to seek help.Patients are also often scared to seek help from their doctors, often preferring to seek answers from nonprofessionals on sites such as Reddit instead. There is fear that doctors would think they are lying. This is especially true when patients want to ask for a specific opiate, as this often makes doctors wary (Lagisetty et al., 2019). Instead, self-research about medications should be encouraged and not seen by doctors as grounds for a scam. Additionally, strict rehab policies and lengthy processes to get specialists are turning patients off (Mehrotra et al., 2011). The specialist issue is not unique to pain management, but should still be improved (Mehrotra et al., 2011). Rehabs or other drug treatment centers should also have less all-or-nothing, more harm-reduction centered approaches, especially ones that match the reasons why a person might be taking a specific drug.There is also a heavy stigma against drug users of all kinds in the medical profession (Ahern et al., 2007). Although it can be understood that a provider would be wary to prescribe an opioid to a self-disclosed drinker or benzodiazepine user, as these can cause dangerous combinations, there has to be some way to balance this. Otherwise, we have a system where patients lie to their doctors about their drug and alcohol use and therefore are not properly counseled and can succumb to these consequences. Doctors should take extra care if there is a Substance Use Disorder (SUD), but still prescribe, maybe with mandatory counseling, as more than anyone, people with SUDs can find these drugs on their own. In this system, posters are reporting lying so they won’t be cut off any prescriptions and even withdrawing by themselves so they are not marked as an addict by records.In the wake of the 2000s “opiate epidemic,” doctors were given more stringent prescription guidelines. In many cases, patients aren’t aware whether they are being affected, unless their doctors told them directly, but patients are aware that some great changes have been made, either from their past medical experiences or that of the people they know. Private practices have also instituted blanket rules against prescription, mandatory pain contracts, drug urinalysis, and pill counts, which can lead for one “slip-up” or double dose in a patient’s pain regimen to get them in trouble (Tobin et al., 2016). These policies should be reexamined as they are mostly working just to deter and punish chronic pain patients (Tobin et al., 2016). State and federal guidelines also need to be loosened, as doctors should have more freedom over their prescription choices, making patients’ lives better.

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#science #social science #research #public health #drugs #harm reduction #opioids #chronic pain #disability #cripple punk #sociology

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