Chronic Opioid Therapy for Nonmalignant Pain: The Patient's Perspective. Part II—Barriers to Chronic Opioid Therapy

Study Design 

The aim of this phenomenologic study was to examine the lived experience of adults receiving opioid therapy for relief of chronic nonmalignant pain through the examination of data obtained through serial tape-recorded narrative interviews.

Sample 

Participants for the study were recruited from two outpatient pain practices in the eastern United States. Recruitment of participants continued until saturation in the data occurred (Morse, 1991). The sample was composed of 16 women and 6 men receiving opioid therapy for chronic nonmalignant pain, and the participants ranged in age from 29 to 84 years. The length of time on opioid therapy for participants ranged from 1 to 4 years. Opioid therapy included both long- and short-acting opioids with morphine-equivalent doses ranging from 22.5 mg/day to 3,200 mg/day. All participants in the study were significantly more functional than they had been before the opioid therapy and were currently experiencing only minimal and manageable side effects.

Procedure 

Data were collected through the use of tape-recorded in-depth serial interviews conducted in the privacy of the participant's home or other agreed-upon location. The first interview was loosely structured using an interview guide consisting of five questions:

During the second interview, validation of the content of the first interview was made with the participant, as well as achieving clarity on the meanings of the participant's statements.

Analysis 

Analysis of the data in this study was done using the constant comparative method as described by Lincoln and Guba (1985). Coding, categorization, and synthesis of the data were conducted and facilitated by the performance of line-by-line content analysis. The data were recurrently examined in parts and as a whole to verify inter-rater reliability of the coding scheme by three researchers versed in qualitative data analysis.

Methodologic Rigor 

Three standards of rigor, namely, credibility, auditability, and fittingness, were integrated into the methodology for this study during study development (Beck, C. T. (1993), Chiovitti, R., & Piran, N. (2003), Speziale, H. J., & Carpenter, D. R. (2002)). A series of two interviews were utilized to capture the data in this study. After the initial interview, the tapes were transcribed and an initial analysis of the transcript was made. The second interview was utilized to validate the themes with the participant as well as to achieve clarity, as well as add credibility. Credibility was also established through the careful use of the literature review by the primary investigator (Beck, 1993). The initial literature review was conducted for the purpose of confirming the fact that a gap in the literature existed. After the data were collected and analyzed, a literature review for the purposes of comparative analysis with existing research was conducted. This twofold method of literature review was used to limit the influence of the literature on thematic construction.

Auditability, or the ability of one researcher to follow the method and conclusions of another researcher, was confirmed by the development of a consistent format for coding, as well as by the use of theoretic sampling to saturation (Beck, C. T. (1993), Strauss, A., & Corbin, J. (1998)). Fittingness, or the transferability of findings, was confirmed by comparative analysis of the study findings with existing literature with the goal of illustrating the parallels with existing research regarding the use of opioid therapy for chronic nonmalignant pain (Beck, C. T. (1993), Strauss, A., & Corbin, J. (1998)).

General Experience of Stigma 

Participants spoke of being stigmatized as addicted and/or morally weak as part of receiving chronic opioid therapy.

“Everyone looks at you like you're some sort of drug addict. It doesn't matter what you're doing. You must be a drug addict, you want more, you must be a drug addict. I'm tired of putting up with it.”

“They think everybody is going to become addicted. I laugh to myself when I hear doctors say it to other people. That is what they expect, literally, that is what they expect.”

“As soon as you mention to someone that you are on pain medication its, ‘Oh my god, you've got to get off it.’ It is viewed as weak. Somehow I am weak for being on this medication.”

Family and Friends 

Participants frequently recounted the negativity, stigma, and disdain of family and friends’ reactions to their receiving chronic opioid therapy.

“My son told me I was a drug addict. He did. He really did. He was to the point, he didn't know what he could do for me. It really was that bad.”

“My sister is a nurse and we have had this conversation … she was not OK with it when I was on the patches.”

“I had originally told my sister and she was very concerned. Then she said, ‘As long as you don't stay on them.’ She thought it was OK if I did it for a while but as long as I didn't stay on them. So I just sort of never told her. And she never asked.”

The following participant speaks of his wife's fear of future birth defects in their children due to his use of opioid therapy.

“But she has concerns such as when we want to have children, are there side effects. I told her all the side effects, that all the side effects you see and hear are always in the mother's bloodstream. It is not from the man.”

The participants also experienced much pressure from family and friends to halt use of their prescribed pain management regimen.

“… my mother, even my best friend. Their attitude is get off this garbage, okay?”

“I was taking it, you should have seen the reaction, my mother, my sister, my three dear friends. ‘You are going to become an addict. Why are you doing that?’”

Social Barriers 

Social barriers included fear of reprisal from employers and colleagues in the workplace. Participants spoke frequently about fear of losing their job.

“Well I always live in the fear that one day they're going to haul out my paper that I wrote all my meds down and they're going to go, wait a minute, you can't work using all this stuff.”

“I had to worry about how I looked everyday you know … if I worked Saturday and I felt alright and I looked alright, then I called out sick Sunday, they would say … what could possibly be wrong with you today. My boss would always bring me in and question me …”

The following participant speaks of scrutiny from a work colleague.

“… one day I had a bad night and I was running late, so I just combed the hair and I went in and I had one of the employees come right up to me and say … oh, are you trying to look sick, because you didn't put make-up on?”

One participant who was going through a divorce described meeting with the attorney who suggested her husband take out a life insurance policy on himself with her as the beneficiary because she was disabled. She was taking morphine and described the attorney's response, “But with you being on the morphine you are going to die before him anyway. He will outlive you.” The participant said she was stunned.

Participants also talked about the stigmatization they endured as part of receiving chronic opioid therapy.

“It's like you're a leper…”

“You must be selling your drugs if you are taking so much of these drugs. You look so healthy.”

“He said, ‘Don't you think you should get back to 4 pills? You are up to 15 pills.’ I said, ‘But I can do more. I can do my own laundry. I can clean now.’”

Knowledge Barriers 

Several knowledge barriers were noted by participants. Lack of knowledge existed on the part of prescribers and pharmacists regarding chronic opioid use and how to effectively prescribe chronic opioid therapy.

“There are still a lot of doctors out there that are against it. They think it is bad. Bad medicine. Bad practice.”

“He [the physician] was just so worried, so worried.”

“… he is very slow with that prescription pad for pain. Very slow. It bothers him to write a narcotic prescription …”

“… he was so afraid to give me more than two Tylenol number three a day. It was like gold, I had to cherish it and only take it if I absolutely could not get up.”

“You're going to see a doctor and you're driving in a car and you're thinking, I wonder what his views are on pain meds.”

The following participants talk of the lack of knowledge on the part of a pharmacist regarding dosing and the use of the synergistic effect of medications to control pain.

“She told me she wouldn't be able to fill the Oxycontin because I was already taking the pain killer Vicodin.”

“… at one time he wouldn't fill it because the dose was too high, and I was taking too many of them and he didn't want to get in trouble. I would say to him, ‘Why would you get in trouble? The doctor is the one prescribing the drugs?’ I guess it was an excuse because he didn't want to fill it for some reason but that is the excuse he would give me.”

Prescriber Barriers 

Another barrier was the fact that many providers insisted on treating participants as though they were experiencing acute pain instead of chronic pain.

“They treat you like you are somebody that just has pain just because you have surgery, not somebody that has chronic pain.”

“I guess I was afraid, because they always check to see how much you're taking and what you're starting to ask for and why are you asking for more. I mean, it's not because I want to take more medicine. I really don't, but I want to be in less pain. So it's tough.”

Participants also talked about the stigmatization by health care providers that they endured as part of being on chronic opioid therapy.

“You must be selling your drugs if you are taking so much of these drugs. You look so healthy.”

“He [the physician] said, ‘Don't you think you should get back to 4 pills? You are up to 15 pills.’ ‘I said, ‘But I can do more. I can do my own laundry. I can clean now.’”

“One of my doctors wanted me to go somewhere else … the gynecologist.” “Why are you taking this? A little negative about it.”

“My family doctor, he doesn't know any longer. Because, his, when I told him, he said, “you know, you're a young woman, get off this garbage.”

“He [the physician] said he is glad to give it to me if it's helping but he doesn't want to be responsible if I become addicted.”

This participant went on to describe the physician's reluctance to write prescriptions for opioids:

“It is a fight every time I ask.”

Pharmacy Barriers 

Participants spoke frequently of the barriers to obtaining their prescribed medications from pharmacists.

“… the first question [from the pharmacist] is “why are you taking this and why have you taken it for so long?”

“My pharmacist has said, ‘you know, you've got to get off this garbage, when is he going to get you off this garbage?’”

“It's a constant, ‘you don't need this and it's garbage and your doctor is getting you hooked.’”

“The druggist, he asked me some kind of stupid questions like, ‘Oh, I didn't know you take it on a regular basis.’”

Several patients discussed the requirement of a letter from a physician describing what their diagnosis was and why they were prescribing opioids.

“I had a pharmacist … he made [my doctor] write a letter to him. [He said] I cannot fill this prescription until your doctor tells me why you're doing this.”

One patient explained that this happened when a new pharmacist was asked to fill the same prescription she had been filling monthly at the same pharmacy for the past year. The pharmacist refused to fill the prescription without the letter from the physician.

“… the third time that I had gone in there, she [the pharmacist] goes, ‘What is going on with this medication.’ I said, ‘Excuse me?’ She said, ‘This is the third time that you have had that amount filled and next time I am not going to fill it, I need a letter from the doctor.’”

System Barriers 

The perception of regulatory guidelines by prescribers and pharmacists was a common theme, and participants frequently indicated it as a barrier to treatment.

“I still get worried over that, that the government that is overseeing this will come down on the doctors because they don't know what it is like. There are doctors that won't give it out. They're afraid to give it out.”

“Whenever I have been confronted by a doctor or a health care professional, what it boils down to is fear. Not what the efficacy of it [is], not what the studies say, not what people tell you, who are suffering—it is all about fear. They are afraid of being prosecuted. They are afraid that somebody is going to come in and say, ‘You prescribed too many of this to this person and we want to know why and you made an addict out of this person and that is against the Hippocratic Oath. First, do no harm, and you did this person harm.’”

Several other system barriers frequently cited were issues surrounding cost of medication and insurance issues.

“The insurance company not paying the pharmacies, what they weren't doing was they weren't going through directly to the pharmacy. They were expecting me to pay first and then they were going to reimburse me …”

One patient described a discussion with a pharmacist:

“I said, ‘I can't stop taking these, I will go withdrawal’ so I do need it.” The pharmacist responded, ‘Well it's expensive, I don't know if I can order it ahead because it costs so much money.’”

“The only other problem I have sometimes is with the insurance company. When they get behind on their payments with them and they don't want to give it to me, oh my god, they can't. The one time they didn't want to give me my medication.”

“So I have gone a day without medication, because I went to one pharmacy and they didn't have it, so I had to go to another pharmacy, they don't have it, I have to go to another pharmacy, they don't have it …”

Limitations 

In qualitative research, Sandelowski (1997) suggested that emphasis be placed on idiographic or naturalistic generalizations or conclusions that are drawn from and about the particular cases. Therefore, the barriers and stigmatization of the participants described in this study may not be generalizable to all those receiving long-term opioid therapy for chronic nonmalignant pain. The lack of a prospective methodology and the potential for recall bias are limitations of the study. The relatively small number of participants in this study were from only two clinical sites and reflected participants who had a positive experience with chronic opioid therapy. Replicating the study with other settings and including perspectives from patients with both positive and negative experiences, including those who did not respond to opioid therapy and those who experienced unmanageable side effects with chronic opioid therapy, will provide broader understanding of the patient's perspective of chronic opioid therapy.

Implications for the Clinical Setting and Future Research 

Nurses and primary health care providers are often the first health care “gate-keepers” that individuals encounter. When considering the fact that pain is the most common symptom for which individuals seek interface with the health care system, it is imperative that those with whom these individuals first make contact gain a better understanding of the barriers experienced by individuals living with chronic nonmalignant pain receiving opioid therapy, as well as the associated stigmas. The data derived from the present study provide us with pertinent knowledge to effectively work with this population, alerting patients to potential difficulties that may arise in terms of maintaining their treatment regimen. This study reveals the fact that patients receiving chronic opioid therapy cope with numerous barriers to maintaining their pain management regimen. Clinicians should routinely assess barriers to therapy with each patient to individualize, and therefore optimize, therapy. Once barriers have been identified, clinicians should strive to assist patients in overcoming them. Examples of assisting patients to overcome barriers include such things as facilitating the insurance process, and disseminating evidence-based knowledge regarding the safety and efficacy of chronic opioid therapy when properly prescribed and managed.

Future research in this area should be directed at examining ways to diminish or alleviate barriers, reduce stigma, and educate the health care system at large. In addition, until the existing paradigm of the health care community regarding this treatment modality is reformed, interventions should be investigated aimed at assisting these individuals to maintain their pain regimen in light of the associated stigma and barriers involved.