Opioid Patients Often Feel Stigmatized, Review Finds

February 23, 2020
Samara Rosenfeld

Patients express worry related to using opioids and that they are not always on the same page as their provider.

Patients who took opioids for chronic non-malignant pain often felt stigmatized and did not want to take the medication, according to a recent review.

The findings of the review highlighted that individuals who took opioids weighed the pros and cons of the medication but felt they had no choice but to take them because of their pain. What’s more, patients felt they were not always on the same page as their healthcare provider.

Vivien Nichols, a research associate from the Warwick Clinical Trial Unit at Warwick Medical School in the UK, and colleagues screened 2994 unique citations and checked full texts to better understand the experience of taking opioids for chronic non-malignant pain or coming off them. The team identified 5 themes: reluctant users with little choice; understanding opioids (the good and the bad); a therapeutic alliance (patient and provider not always on the same page); stigma (feeling scared and secretive but needing support); and the challenge of tapering off or withdrawal. An overarching theme of constantly balancing also emerged.

Nichols and the team searched databases for qualitative studies of patients’ views of taking opioid medication for chronic non-malignant or coming off them. The investigators included studies that featured adults >18 years old who took or had taken opioid medication in the last 5 years; related to patient perspectives on using opioid medication for chronic non-malignant pain; and had patients using differing medications.

Two investigators screened the nearly 3000 titles or abstracts and identified 153 full texts of interest. The texts were then read and 122 were excluded, which left the team with 31 articles.

Reluctancy but Little Choice

The investigators identified this theme, which described a resistance or hesitancy to take opioids. Patients were mainly concerned about side effects or addiction but felt there were no alternative options for them.

“I don’t want to become addicted, if I’m going to become addicted then as far as I’m concerned, I’m a druggie, so I might as well not be here anyway, so I don’t want to become addicted…” a patient reported in a previous study.

Other patients mentioned underusing or reducing their medications when possible because they did not want to be on medication long term. Some recognized instances of dramatic improvement in people’s lives, which weighted their choice to stay on opioids.

Understanding the Benefits and Pitfalls of Opioids

“I mean it is just like a miracle as far as I’m concerned,” a patient said. “It is like knowing it [the pain] is there but you have the instruments to prevent it from getting out and [be]coming a roaring demon.”The theme described patients’ knowledge or understanding about opioids. Patients acquired the information they needed slowly over time from pharmacists, inserts in their medication, and the internet.

Typically, patients had poor knowledge about using the medication for chronic pain and about addiction, overdose risk, and side effects.

In a previous study, a patient reported that because nobody told them about possibilities of overdosing, they did not take their opioid medication as prescribed. Rather, whenever they felt pain, they took 5 or 6 pills and then would run out.

If a patient felt their provider lacked an understanding of the place for opioids in treatment or were cautious about using them, they felt additional stress and like they needed to defend their usage.

Others felt well-informed, which either gave the patient confidence in the opioid regimen or brought up more concern.

Not Being on the Same Page as Your Provider

“Under Dr. A, I’ve learned more,” a patient said. “And my concern has been… well it was initially the possibility of addiction, but she has assured me that I’m not showing signs of addiction at all. I may have withdrawal problems.”There was an overall feeling that healthcare providers and patients were often on a different page when it came to opioid use.

“My family doctor does not want me to be dependent on heavy pain meds, so I am intensely miserable 99% of the time,” a patient said.

Patients reported that they were not listened to and were frustrated by a lack of empathy from their physician regarding their experience with pain. Providers who were reluctant to prescribe or used opioid contracts or a restriction of medication were considered punitive, and made patients feel like they were doing something wrong or being treated like a drug addict.

Feeling Stigmatized but Needing Support

Some patients complained that it was difficult to build a therapeutic alliance due to frequent provider turnover, which affected a patient’s ability to receive individualized care. Patients often needed to restart conversations about pain and treatment options.Patients described feelings of stigma and fear in relation to their opioid use. The stigma came from negative attitudes and reactions from family, medical professionals, and work colleagues.

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

Because of the stigma associated with opioids, some patients chose to keep their use of the medication a secret from everyone. Others made a conscious decision about who they would tell and who they would keep the information from. Relationships often suffered.

Feeling supported validated a patient’s choice and lessened their fears and concerns.

Challenges of Stopping Opioid Use

In some of the studies Nichols and the team reviewed, patients expressed difficulty and profound effects of tapering or withdrawing from opioids.

Constantly Balancing

Patients reported feelings of anxiety that could be alleviated by support from their healthcare provider or another person. Successfully tapering was often a collaborative agreement between the provider and patient.Overall, the investigators tied the 5 themes into 1 overarching theme: constantly balancing. Ultimately, clinicians must walk a fine line to balance the pros and cons of prescribing opioids while maintaining patient trust.

The study, “Experiences of people taking opioid medication for chronic non-malignant pain: a qualitative evidence synthesis using meta-ethnography,” was published online in the journal BMJ Open.