Health Care Experiences when Pain Substance Use Disorder Coexist: “Just Because I’m an Addict Doesn’t Mean I Don’t Have Pain

Abstract

Objective

To report the healthcare experiences of 34 individuals with coexisting substance use disorder (SUD) and chronic pain.

Design

Narrative inquiry qualitative study of 90-minute interviews. Setting: Midwest metropolitan methadone clinic.

Subjects

All individuals had SUD, were treated for SUD with methadone. They all self- identified as having pain greater than 6 months.

Methods

This qualitative design allowed exploration of how participants made sense of events related to living with SUD and chronic pain. Narrative inquiry gives a consistent story from the participants’ perspective and researchers can perform additional analysis using the storyline. Thematic analysis occurred of their healthcare experiences.

Results

Results revealed that participants (a) spoke about how they used deception to obtain opioids when their addiction was out of control, (b) were disturbed by health care providers having little understanding or ability to help them with their painful condition, (c) felt they wanted to abuse opiates again when receiving poor treatment by the health care team, (d) related what went well in their health care to help them maintain their sobriety, and (e) recommended improvements on health care interventions that included effective treatment of pain.

Conclusions

Coexisting chronic pain and SUD create unique health care needs by mutually activating and potentiating the other. There are very few comparable studies exploring the experiences of individuals when pain and substance use disorder coexist. The health care team can better develop treatment plans and test interventions sensitive to their unique needs when they understand the experiences of this population.

Introduction

Opioid abuse is a significant public health problem that carries substantial morbidity and mortality, and costs to our society (1,2). In 2010, the National Drug Intelligence Center (NDIC) reported costs of $72.5 billion per year associated with controlled prescription drug diversion, including procurement of opioids through doctor shopping, prescription fraud, and theft (3). Furthermore, data from the Treatment Episode Data Set (TEDS) showed a four-fold increase in substance abuse treatment center admissions involving prescription opioid pain relievers (4). While prescription opioid misuse is a major public health problem, so is chronic pain. Chronic pain affects 116 million adults in the United States and is a societal problem costing $560–635 billion dollars per year (5). Finding solutions to reduce the toll and cost of coexisting chronic pain and substance use disorder (SUD) borne by patients and our communities was the reason this study examined the problem through a new lens using qualitative narrative inquiry.

Prevalence reports and costs to our society are important indicators; however, people with these intertwined problems of SUD and chronic pain face significant challenges to their health.

For some individuals, pain can lead to SUD through treatment with opioid analgesics, and pain can cause relapse in those with known SUD (6). Furthermore, SUDs can make pain worse through active injuries that are masked through substance use (6–8). When study participants’ drug use was out of control, they had worse pain; when pain was out of control, the experience caused their cravings to become worse (6). Each caused a reciprocal and mutually reinforcing cascade (6). Management of patients with these coexisting health problems has not always been successful. Patients often feel their pain is not well managed (9,10), while health care providers have concerns that they may harm the patients when prescribing opioids for pain by activating symptoms of SUD (11–13). There are few comparable studies on the patient’s experiences with coexisting SUD and chronic pain as they encounter the health care arena.

Review of the Literature

The use of illicit substances is a significant driver of health care utilization (14,15). Early studies highlighted the importance of Identifying the comorbidities of chronic pain and SUD (16–19). Current findings continue to show that physical illnesses, such as arthritis, low back pain, headaches, and chronic pain from injuries, are prevalent among individuals with SUD, and result from excess use and risky behaviors (6,20). Despite these painful medical conditions, those with SUD have many unmet health care needs. Findings from a study in eight opioid substitution programs in the Veterans Administration system in the Southwestern part of the United States revealed that medical and psychiatric severity rises and there is a greater utilization of health care when pain is present (21). However, when SUD is present and patients seek out and receive primary care, they are less likely to receive treatment conforming to an accepted standard of care (22,23). Those living with SUD and their families often feel isolated in their struggle to understand the disease, find effective treatment, and generally feel devalued by society (14, 24–29). These feelings are due in part to the shame and stigma attached to addiction, as well as the separation of most treatment from mainstream health care practice (14). These findings profiled in the SUD literature are comparable to findings from studies of those living with chronic pain. People with chronic pain felt isolated, shamed, and humiliated (13,30,31) reported poor communications with their health care provider (32–34); and felt the health care team minimized or doubted their pain (34). These negative encounters with the health care team resulted in individuals on chronic opioid therapy (COT) wanting to hide their treatment from others, fearful losing control of their prescribed opioid, and feeling stigmatized while receiving treatment despite positive outcomes (35–38).

For the last 20 years, the literature has been mixed about the benefits of opioid therapy for chronic pain, as well as the problems caused by the use of COT in the chronic pain population. Studies have shown the positive association of long-term opioid therapy through improved function, enhanced quality of life, and reduced pain (39–50). Conversely, other studies have shown the negative effects of COT including greater morbidity, decline in function, higher utilization of health care, recurrent hospitalization, and increased length of hospital stay (51–54). The risk of overdose and Death is also a potential concern as approximately half of the deaths involving opioid analgesics, including more than one type of drug such as benzodiazepines, cocaine, heroin, and alcohol (55–58). Furthermore, persons with mental health disorders are more likely to be prescribed opioids and also likely to overdose from them (59,60).

The literature informs us that there are varied responses to opioid therapy for the treatment of chronic pain; however, a balanced approach is necessary for prescribing opioids in patients with chronic pain who have legitimate medical need while addressing the serious public health problem of prescription opioid misuse and approach is necessary for prescribing opioids in patients with diversion. A view of this problem through the eyes of people who suffer from a coexistence of SUD and chronic pain can lead us closer to understanding the phenomenon and to develop safe and effective ways to manage patients with these two difficult-to-manage health problems.

Purpose

The purpose of this study was to examine the narratives of people who experience chronic pain and who were receiving methadone for the treatment of SUD and opioids through a methadone clinic. Addressed in this article are the health care experiences of those with coexisting SUD and chronic pain as they seek help in managing these two conditions.

Methods

This study used narrative inquiry because the design allowed exploration of how participants made sense of events related to living with SUD and chronic pain. A narrative is a story being told by a person in a way that is selected, organized, connected, and evaluated as meaningful for the audience (61). Stories link events or ideas into meaningful patterns (62). Narrative inquiry elicits a consistent story from the participants’ perspective and researchers can perform additional analysis using the storyline.

Sample

Purposive sampling was used to recruit 34 participants with chronic pain from a large methadone center in the Midwest for 90-minute interviews. Institutional Review Boards (IRB) of two institutions approved the study and all participants gave written informed consent. Eligibility criteria are shown in Table 1. The participants were reimbursed $20 for their time.

Table 1.

Eligibility Criteria

At least 18 years or older Conversant in English Experience self-identified pain for most of the time for 6 months or greater Currently receiving methadone for opiate addiction Able to get to and from the interview location without assistance Willing to tell the story of their experiences with pain and substance use disorder Not treated by the researcher for pain in the pst 12 months, and would not be placed in the care of the researcher within 12 months following the study.

Data Collection

Recruitment of participants occurred until no new data were revealed (63). The data collection methods included a demographic questionnaire, field observation notes, and semi- structured interviews. The demographic questionnaire consisted of 16 items that elicited information about age; gender; occupation status; race or ethnicity; relationship status; education level; self-reported pain diagnosis, pain treatments, and family history of pain problems; drugs of abuse, duration of use, types of treatments, length of sobriety, and family history of SUD. The participants’ SUD status was confirmed with their presence and participation in the methadone clinic. Field observations noted participants’ non-verbal cues, tonal inflections, and ability to focus during the interview. One investigator interviewed each participant once and this interview was audiotaped, conducted in a private room, and lasted approximately 90 minutes.

A semistructured interview guide¹ was used consisting of open-ended questions about their experiences relating to living with coexisting SUD and chronic pain, as well as their health care encounters. The questions were developed from the review of the literature and the investigator’s clinical experience. Audio-recordings from the interviews were recorded on a digital file and sent to a transcription service via a secured link. Data were stored in hard copy in a locked file cabinet at the researcher’s work site.

Analysis

The data were analyzed using thematic analysis (61). Themes were identified by the underlying patterns of experiences found in the interviews. An analytic matrix was created and searches were made for similarities and differences among participants’ interpretations of the events in their lives. Narrative summaries were written for each participant. Exemplar narratives were identified that best illuminated the analytic findings. Comparisons were made both within and across cases (61).

Scientific rigor was established through two factors: credibility and dependability. Credibility was attained by the extensive review by five content and method experts. Dependability was assured when there was stability in the participants’ themes and no self-contradictory statements occurring within a single time frame (64).

Sample Description

The 34 participants with SUD and chronic pain consisted of 59% male and 41% female, mean age was 45 years (range: 22–63), 50% identified as African American and 35% identified as Caucasian, 88% were unemployed, 65% were either single or divorced, 50% had a high school degree, and 26.5% had a college degree. Chronic pain was self-identified and included in low back pain; chronic pain related to past injuries such as crushing injury, gunshot wounds, fractured neck, fractured feet or plantar fasciitis; rheumatologic disorders including rheumatoid arthritis, osteoarthritis, fibromyalgia, myofascial pain; interstitial cystitis and endometriosis; wrist pain from carpal tunnel syndrome; and pancreatitis. The substances of abuse include heroin, cocaine, marijuana, alcohol, and prescription opioids and benzodiazepines.

Results

There were two major themes found in the participants’ narratives, 1) use of deception when their SUD was not stable, and 2) experiences while receiving health care. Embedded within the healthcare theme are subthemes, the negative and positive experiences identified by the participants.

Use of Deception

Over three-quarters of participants related how they obtained prescription opioids from health care providers, often for the treatment of pain, for the prevention of opioid withdrawal, or to nurture their cravings for their drug of choice. While telling these stories, these participants acknowledged that these behaviors activated or intensified their desire for opioids, caused the development of chronic pain, and created barriers to pain relief. The purpose of communicating these stories is not to provide rationale for health care providers to undertreat the pain from which these individuals suffer, but to depict the desperate behaviors to obtain relief from the suffering of coexisting SUD and chronic pain. These behaviors included, 1) using fake allergies; 2) creating injuries; 3) hiding their SUD; 4) claiming that prescription opioids were stolen; 5) refusing other therapies used to treat pain; and 6) producing radiological films as proof of their pain. The participants stated they portrayed these behaviors for this study to inform health care providers that these behaviors may indicate a problem requiring a therapeutic discussion, evaluation and treatment of their pain, and referral to SUD treatment.

Allergies

During these narratives, the participants exposed their effective strategies for obtaining prescription opioids. One participant said, “I told the doctor I was allergic to ibuprofen just so I would get pain pills. You know, people do that.” For this participant, using allergies was a way of steering prescribers toward what she wanted to manage her pain.

Injuries

Two individuals described their intentional behaviors to injure themselves in order to obtain prescription opioids from health care providers. In the context of their SUD, the pain initially was acute and eventually became chronic. One participant lost control of her use of illicit substances at age 12. When she received prescription opioids after delivering a baby she transitioned to abusing both heroin and prescription opioids. She stated, “I would do things just to get into pain, you know, I would drop bricks on my foot, I would just do all kinds of crazy stuff just to get that pain medication.” Her illicit and prescription opioid use muted the chronic pain that developed in her hands and wrists, and when she eventually sought medical care for her pain, she was diagnosed with a very severe form of carpal tunnel syndrome. Another participant narrated occurrences of beatings throughout his life span that created acute pain. He took opioids for physical pain and emotional pain. His lifestyle with illicit drug activities led to a Gunshot to his leg. He was prescribed opioids for his acute pain but his SUD escalated his harmful behavior as he repeatedly contaminated his leg wound. He stated, “I didn’t want it fixed, I wanted to keep getting dope, it was like a jewel for me to go get dope.” This persistent and painful wound led to chronic pain and he would use illicit and prescription opioids to treat both is pain and SUD. The sequence of their trajectories revealed their use of illicit substances prior to developing their pain; their hazardous lifestyles, and their injuries or surgeries created acute pain that evolved into chronic pain. Additionally, they treated their coexisting SUD and chronic pain with illicit and prescription opioids.

Hiding Their SUD

Hiding SUD was common among these participants with chronic pain as they strived to obtain opioids from health care providers in order to effectively manage their pain. One participant who had chronic neck pain stated:

It got to the point where I almost had to lie to get anything. [If] I would’ve told ‘em about addiction, you know, I would’ve never got anything. Stigma just tears me apart. [They’d say], “Are you addicted to anything?” [I’d say], “No.” [That] was the only thing I had to lie about and everything else went fine.

Prescription Opioids Were Stolen

When patients reported to a health care provider that their prescription opioids were stolen out of their car or their purse or through any means, they would call the health care provider’s office to get another prescription. In current pain management clinical practice, a health care provider who understood that this may not be the true destiny of the prescribed opioid will ask the patient to obtain a police report. One participant who had chronic pain from a motor vehicle accident used this strategy frequently when she experienced cravings for her drug of choice and she needed to prevent withdrawal. She said:

They’d up my monthly doses or I’d fill out police reports and say I got my pills stolen at the grocery store, my purse was stolen, or that kinda stuff, just to get more… If I didn’t have pain pills I couldn’t do my job, I’d be sick.

Refusing Other Therapies Used to Treat Pain

A participant stated she would refuse to participate in other modalities to treat pain. She would not show up for physical therapy appointments or she would participate once only to say it did not help her chronic neck and back pain. She explained:

…[I was] refusing to do the surgery just so [I] can continue to get that pain medication. [I] don’t do the physical therapy part of it, that was my main one right there, ‘cause I knew if I didn’t do the physical therapy, I’d continue to get the pills because the pain was still gonna be there.

Radiological Evidence of Pain

Two participants used radiological images to obtain opioids. These images revealed the physical problem the paticipant stated was painful. One female participant who sustained multiple fractures from falling off a horse as a child stated, “I’ve been getting things my whole life, Darvon, Fiorinal, sleeping medications, Dalmane, Halcion, everything and Dilaudid, Fentanyl patches. The doctors just had to look at my X-ray and they’d give me anything.” The other participant brought his X-rays into the study interview. He showed me his films and stated, “Here’s my [spine].” Then he stated:

They took out three vertebrae and put that stuff in there, but I’ve had nothing but problems with that. If I sit too long in one spot that wire starts poking from the inside wanting to get out. People always have, they say fibromyalgia.

He pointed to a wire in the X-ray that was part of the structure of hardware placed during his spine surgery. These X-rays offered a means to validate a report of chronic pain. It also provided an objective verification as to why the health care provider should prescribe opioids to that patient. These participants related using deception to procure opioids from health care providers in order to treat pain, prevent opioid withdrawal, or to nurture their cravings for their drug of choice. The participants requested the use of these narrative for the purpose of educating health care providers in identifying SUD out of control and referring for treatment.

Experiences While Receiving Health Care

Health care is the principle institution at the intersection of SUD and chronic pain; and every participant in this study interacted with the health care system because of chronic pain, SUD, or both. These narratives on the health care encounters are filled with nuances and meaning that are both negative and positive. Several of the participants wanted to emphasize that just because they had SUD did not mean they didn’t also suffer from pain.

Negative Experiences

Participants spoke of their negative experiences when they encountered the health care team. These negative experiences created anger, life threatening situations, and lack of trust in their care.

Not Feeling Believed. When these participants did not feel well, they sought health care. They felt they had to work hard to be believed and taken seriously. When the participants did not feel believed about their pain, they indicated that this led to their pain being untreated or under treated and feared they would not get the care they needed. One participant with recurrent kidney stones and pain explained the provider’s mistrust, suspicions, and disbelief almost resulted in her death:

When they seen you 25, 30 [times] in the emergency room for alcohol withdrawal, [and then] you go in and say “Oh I have kidney pain, I have kidneys stones and I think I’m gonna need help”, they’re looking at you like, “Yeah okay gotcha there”, they don’t give you anything. They send you home, and I mean one time I went back in the next day. And had I not, I would’ve died because I was septic, and it was real and the doctors don’t think that when you first come in. They look at your sheet, first thing they see is “addict” that sticks in their brain and nothing else helps.

The participants with SUD and chronic pain also gave credence to their suffering from inadequate pain relief when they had surgery, and were sent home with very little opioid to manage their acute postsurgical pain. One of the participants reflected this experience when he said:

When I had my appendix out there was nothing they could’ve gave me to stop the pain. Nothing, I mean that hurt really bad …. I’d have to hug a pillow and cough and sneeze and tear a stitch. Oh yeah, I was abusing the painkillers they gave me then.

This participant stated in a very regretful tone, when he was discharged from the hospital he misused his prescription opioids by takin more than prescribed because he could not get relief. When his pain was poorly managed, his desperation led him to illicit opioids to obtain relief.

Health Care Providers Not Upholding Responsibility in the Care

The participants perceived judgments made by the health care team caused the team to not delve further into the reason for their pain. A participant stated, “you do run into [health care] professionals that say ‘he’s a drug addict he’s not worthy of 100 percent treatment because he’s gonna go back and self destruct, he doesn’t care about his self so why should I care about him’.”

The participants felt they were not listened to. Participants knew they could obtain pain relief from their chronic pain with illicit drugs but they wanted to be examined, diagnosed, and reassured by their health care providers. It was difficult to find health care providers who would listen to them about chronic pain, leading them to feelings of desperation and disregard. One participant stated. “The way they get me out with nothing, no medication, no advice, no nothing, actually, it makes me feel like using.” This individual stated he did not learn about other options of nonaddicting medications, received no answers to why he had chronic pain, and did not receive advice or education on what to do about his chronic pain. This lack of care, education, and advice on options to manage pain led to emotional suffering and further drug misuse for this individual.

In contrast, health care providers overprescribed for some of the participants, giving the patients large volume of pills or very high doses of opioid for the treatment of chronic pain without considering the risk for people with SUD. These respondents revealed the potential harm of doing this. One participant who used drugs recreationally, said after a couple months of receiving opioid therapy for chronic low back pain, he lost control over the prescription opioid. He admitted that he did not know how dangerous prescription opioid could be for him and he was surprised at the high volume and dose the health care provider prescribed. Similarly, another participant was a recreational user then abuser of marijuana and alcohol at 15 years old and sustained fractured ribs, arm, and developed low back pain from a motor vehicle accident at 18 years old. He stated his health care provider facilitated his SUD through liberal prescribing. Moreover, he stated he was not fully prepared for what would happen, and he recounts his experience:

They sent me home with Percocets and I would use ‘em up. And I started, you know, liking how they made me feel. I started healing and, you know, the doctor still kept on prescribing me my pills. I started, you know, using ‘em more and more, so I’d have to buy more or find some way to find ‘em. I was on ‘em for about a year and a half, I think. After that he told me, “You don’t really [have] much more pain and I think you’re dependent on ‘em,” and they started weaning me off. So I started getting’em not for the pain anymore it was for my addiction. So I just kept on, for probably one, two, four years until I got introduced to heroin.

The access to prescription opioids continued without a clear grasp of the participant’s risk nor the participant’s understanding, and he had no legitimate resources to get help. Other participants with chronic pain revealed over using their prescription opioids leading to overdose. In fact, some participants reported, “pushing the limit” of how much they could take. Moreover, it was perceived by participants that the health care providers did not thoughtfully regard the risk of overdose, nor take precautions to minimize this risk. The following comment from a participant with both chronic endometriosis and chronic cystitis reflected her lack of trust of the provider and wanted the health care provider to be accountable for her overdose:

It’s hard to trust, let’s put it that way. I saw my doctor and told him [what happened with my overdose] and he goes, “You are so lucky you’re not dead.” I said, “You’re lucky I’m not, too, because you had to have known I was addicted to pain pills. How could you have not known, you know sometimes, I get them every two weeks and I did it so many times.” They had to have known. If I was out or I didn’t have the money to buy ‘em off the street, I’d go sit in the office until the doctor signed my prescription. You know he knew!

It appeared to the participant there were signs that her prescription drug use was out of control and her doctor should have noticed. Yet she saw no accountability for these oversights, and it resulted in further escalation of drug behaviors including overuse, overdose, and diversion.

Derogatory References

The participants felt discredited when having derogatory references made to them or about them. Participants heard the health care team use terms (drug seeking and pill seeking) that were degrading and made them want to hide their SUD even when they wanted to reveal it to receive proper care. One participant, very angry during this interview, stated that being stigmatized “tore [him] apart.” Another indicated wanting to use drugs again when he experienced degrading treatment from the health care team when seeking help for his chronic pain.

Participants perceived their care as different from patients without SUD. Several reported waiting a long time for care in emergency rooms. One stated, “They just left me laying there like ‘we know you just want pain pills’ or something like that and I didn’t come there [be]cause of that, [they] treated me really rotten like all I was doing was drug seeking.”

These experiences caused some participants to be so angered by the health care team, they wanted to avoid the health care arena altogether. They would obtain heroin and diverted prescription opioids to get their relief. One participant stated, “A lot of times, I just went and got my own medication you know because I know what I felt, I know what I needed.” They found illegally obtaining opoiods to treat their pain was easier, cheaper, there were no questions asked, and they did not have to lie to the health care provider or endure stigmatizing behaviors from the health care team.

Positive Experiences

Half of the participants spoke of their trust in the health care team and how important this trust was for treating pain and SUD. When this trusting relationship existed they reported successful sobriety and felt confident their providers cared. “I’ve really great doctors that I’m working with now that understand my addiction and understand that I do need to control my pain.” Participants felt partnering with their health care provider was necessary in order to achieve the best outcome when pain and SUD addiction were out of control. Furthermore, it was apparent to some participants that methadone successfully treated their pain and SUD.

The participants with coexisting SUD and chronic pain mentioned that they preferred partnering with the health care team to collaboratively manage their difficult pain. The participants provided suggestions for delivering acute and chronic pain management while maintaining sobriety when they required opioids to manage their pain. The aggregate recommendations are presented in Table 2.

Table 2.

Participants’ Recommendations: Pain management in the context of SUD

Treat the pain even when it requires higher doses of opioid As healing occurs, taper the opioids slowly and use relaxation techniques, biofeedback, and counseling Use other non-addictive analgesic agents Use integrative therapies such as acupuncture Try not to use opioids for pain for longer than six days Listen, as patients express their fears and concerns Use services through the addiction department such as addictions counselors or Narcotic Anonymous sponsors to help support sobriety.

Successful Sobriety

Having pain managed so the individual could function was a component of successful management of SUD and chronic pain. To achieve this the participant recognized the importance of keeping appointments with psychiatry, physical therapy, counseling, and other providers that helped them with their SUD and pain. It also meant that the health care provider know about these appointments and how the individual participated during the encounters. The following statement illustrates this type of care:

The fact that he [doctor] treats me not necessarily just as another patient, he knows me individually and we can talk. A lot of my treatment, my clinic appointments, my psychiatry appointments all revolve in the same hospital so he can go online and see if I kept my appointment with my therapist, and he makes sure that I’m doing what I’m supposed to in reference to my methadone also. Everything that I needed to do to keep me whole, he was concerned with. And that I believe makes a really big difference in my treatment today. If you want to keep your addition under control, you’ve got to treat our pain properly.

This participant described how she was the center of her health care and listed all the supports needed to keep her healthy in managing her SUD and chronic knee pain, including her physician, physical therapist, methadone clinic nurses and counselors, and family. If she got off track and missed appointments, the health care team would know and be able to intervene quickly to help her get back on track. Maintaining overall health meant working to maintain those supports.

Confidence and Trust

Open and honest communication occurred when some participants revealed their SUD to the health care provider. Participants described that SUD was isolating when it was cloaked in secrecy. One stated, “Secrets keep you sick.” Another participant felt honesty with her provider allowed her to receive the best care possible, including help with her chronic pain. Participants who established open and honest communication with their trusted health care team felt they were successful receiving proper chronic pain management and help with their sobriety. One participant who sustained a neck fracture from a motor vehicle accident and had a long and painful rehabilitation resulting in chronic neck pain, spoke of how he appreciated his current care.

I haven’t [been] successful in my sobriety and they’ve still been there in my corner, helping me helping me to deal with this, you know, ‘cause, you know, I’m the type of person – I been using heroin for 36 years, you know, and it’s just something you don’t, you can’t up and stop.

He felt confident that his health care team would help him return to health. He did not have to keep his relapses a secret but rather acknowledge them to his health care team, and receive needed help.

Methadone as Treatment for Their Chronic Pain and Their SUD

According to most participants, receiving methadone in combination with the counseling they received from the methadone clinic staff was helpful. They felt their SUD was in control and they had a great deal of support. The participants who commented about methadone and its effect on pain felt it helped their chronic pain for long periods and improved their overall function.

Discussion

Key findings were determined from the narratives of the participants in this study on their health care experiences when they lived with well-defined SUD and self-identified chronic pain. Major themes from the narratives were 1) reports of use of deception to receive opioids when their SUD was unstable; and 2) experiences while they received health care that were negative and positive. Findings embedded in health care experiences were 1) participants were disturbed by health care providers having little understanding or ability to help them with their painful condition; 2) participants felt like abusing opioids again when receiving poor treatment by the health care team; 3) participants told what went well in their health care to help them maintain their sobriety; 4) and the participants recommended improvements on health care interventions that included effective treatment of pain.

In their narratives, the use of deception was described because the participants felt it was important for health care providers to know that these actions represented a disease that was out of control. These participants acknowledged that their behaviors could have precipitated negative encounters from the health care team. However, they expressed frustration at the lack of knowledge the health care team had on how to manage their pain in the context of their SUD. These findings also were found in another study where participants sought help from health are providers and found that health care teams had little or no knowledge on how to treat those who suffered from chronic pain and SUD [9]. Furthermore, some of the participants in the current study preferred to avoid health care altogether, while others provided the health care team with constructive feedback to inform how they would want to be treated.

The verbal and nonverbal communications of health care providers offer a connection to patients in positive or negative ways. Patients feel less cared for when they experience subtle actions that are interpreted as discriminatory behaviors by the health care team. In this study the participants stated they wanted to hide their SUD or avoid health care altogether when this occurred. This finding is comparable to other studies showing that people with SUD are less likely to receive standard of care or nonemergency medical care [65,66]. Participants in this study reported undertreatment of their symptoms, resulting in costly emergency department visits and hospitalizations due to life-threatening medical emergencies. The participants’ feelings of poor and inadequate treatment by the health care team could create barriers to the most effective utilization of available health care.

People with pain and an active or past history of SUD are at risk for having pain undertreated [9,10]. These participants wanted help from their health care provider in managing their chronic pain in the context of their SUD. Additionally, they offered recommendations on how to manage their pain. These recommendations, found in Table 2, are consistent with the guidelines established through the Center of Substance Abuse Treatment (CSAT) entitled, “Managing Chronic Pain in Adults With or in Recovery From Substance Use Disorders” [67]. These guidelines state when patients are on agonist therapy for SUD and have an acute episode of pain through injury or surgery, they will require higher than usual doses of opioids, non-opioid analgesics, and interventional pain management. Furthermore, these chronic pain guidelines recommend appropriate education to improve adherence, help reduce fears about medications or treatments, and strengthen clinician-patient relationship by demonstrating respect, enhance patient self efficacy, and providing opportunity to discuss concerns [67].

The participants in this study also reported that when methadone is given in conjunction with counseling it not only helped their SUD, but also their pain and overall function. A couple of participants commented favorably on how long their analgesia lasted with one dose of methadone a day. This finding confirms Rhodin et al. [8] study of 60 patients in a methadone clinic with 75% reporting pain relief and 25% reporting moderate pain relief. A conclusion drawn from this finding is that methadone may be a treatment for chronic pain for those with the additional SUD; however, the distinction between methadone used for pain and methadone used for SUD is not currently clear. Yet there are promising findings of the efficacy in using methadone or buprenorphine for those with coexisting chronic pain and SUD with opioids [68,69].

People with long-term SUDs are very likely to have chronic pain due to the kind of injuries often sustained while procuring illicit substances; for men, gun violence and street fights; for women, sexual and physical abuse [70–72]. Additional research using qualitative method may find other social contexts in which the use of illicit substances thrives. These participants wanted a therapeutic relationship with their health care team, and they wanted their health care providers to avoid discriminatory behavior and derogatory terms. They also wanted careful and safe delivery of pain medications that would provide effective pain management without causing relapse. While there are guidelines addressing chronic pain management [73–76], these either are cumbersome to use in the clinical setting [67], do not contain content that is clinically applicable in addressing prescription opioid misuse or Susceptibility to misuse, or the health care providers do not now they exist [67,77–79].

Limitations of this study existed. These findings cannot be generalized beyond this sample of participants or situations and groups with similar life circumstances [80,81]. Furthermore, this study recruited those with chronic pain; however, their chronic pain diagnosis was self-reported and there was no access to their medical records to verify. And finally, within this single interview design, there was no ability to have the participants verify the study’s findings to enhance credibility.

These findings have clinical implications for the way we provide health care to those with coexisting SUD and pain. Concurrent priorities of pain management and safe prescribing practices for people at risk for losing control of prescription opioids will likely reduce our formidable problems of prescription opioid misuse. There will not be favorable outcomes if we merely prescribe opioids. By partnering with patients, we allow the patient to be in the center of care to actively develop and individualize the treatment plans. The CSAT guidelines advocate for patient education of medication effects when the risk for prescription opioid misuse are high, educating patients on how relapse will be managed in a supportive manner, and provide resources for counseling during psychological, physical, or social stressors. But most importantly, we must examine how we treat our patients. Talking with our patients in a friendly, respectful, caring, and therapeutic manner is important if patients are to feel well cared for. They want to know that their health care team is doing everything possible to help them with the management of their pain in the context of their SUD. The participants in this study had positive health care experiences when they were treated like individuals rather than like drug addicts. They felt safe and well cared for when the health care providers took their health needs seriously, and took a special interest in them and what they had to say.

A final implication for clinical practice is the benefit of participants telling their stories. Many of them said the study interview was their first opportunity to describe the details of their experiences living with SUD and chronic pain. If health care providers invited these patients’ stories and demonstrated genuine interest in their telling, they might be able to show persons living with SUD and pain that they do care, building a trusting relationship with the patient in the center of care.

Future research questions arise from this study and others. What are the gender differences of patients with chronic pain who receive methadone for SUD? What are the analgesic effects of methadone when used for SUD and chronic pain? What treatment algorithm would help those who treat patient with coexisting SUD and pain? Further studies should include the narratives of the participant in conjunction with quantitative analysis to provide a more complete picture of this phenomenon.