Cancer pain self‐management in the context of a national opioid epidemic: Experiences of patients with advanced cancer using opioids

Abstract

BACKGROUND The US opioid epidemic has prompted dramatic changes in public attitudes and regulations governing opioid prescribing. Little is known about the experiences of patients with advanced cancer using opioids in the context of the epidemic. METHODS Semistructured interviews of 26 patients with advanced cancer were conducted between May 2019 and April 2020; their experiences self‐managing chronic pain with opioids were evaluated. RESULTS Patients consistently described the negative impact of the opioid epidemic on their ability to self‐manage pain. Negative media coverage and personal experiences with the epidemic promoted stigma, fear, and guilt surrounding opioid use. As a result, many patients delayed initiating opioids and often viewed their decision to take opioids as a moral failure—as “caving in.” Patients frequently managed this internal conflict through opioid‐restricting behaviors (eg, skipping or taking lower doses). Stigma also impeded patient‐clinician communication; patients often avoided discussing opioids or purposely conveyed underusing them to avoid being labeled a “pill seeker.” Patients experienced structural barriers to obtaining opioids such as prior authorizations, delays in refills, or being questioned by pharmacists about their opioid use. Barriers were stressful, amplified stigma, interfered with pain control, and reinforced ambivalence about opioids. CONCLUSIONS The US opioid epidemic has stigmatized opioid use and undermined pain management in individuals with advanced cancer. Interventions seeking to alleviate cancer pain should attend to the multiple, negative influences of the opioid crisis on patients' ability to self‐manage. LAY SUMMARY Patients with advanced cancer suffer from significant pain and frequently receive opioids to manage their pain. Of the 26 patients with advanced cancer interviewed, the majority of patients experienced stigma about their opioid use for cancer pain management. All patients felt that the opioid epidemic fostered this stigma. Several struggled to use opioids for pain because of this stigma and the logistical complications they experienced with pharmacies and insurance coverage. Many were afraid to share their concerns about opioids with their providers. ​

Framework for opioid stigma in cancer pain

“…Emerging literature in this area also focuses on the scope and impact of opioid stigma in patients with active disease, including patients with advanced cancer. 6,17 However, additional research is needed to examine how applicable this framework is for a diverse group of patients, including sociodemographic groups (eg, aging patients and patients with medical comorbidities that complicate treatment) and clinical subgroups. For example, little is known about the extent of stigmatizing experiences in cancer survivors, who may experience unique challenges associated with chronic cancer pain as they transition out of active treatment and into survivorship (eg, shifting risks and benefits for prescription opioids over time, intersecting chronic pain stigma, barriers to accessing specialty care, etc).…”

Cancer pain during an epidemic and a pandemic

“…They report complex and conflicting emotions such as fear of addiction, along with stigma and guilt as a result of these access issues and negative media messaging about opioids. Many have responded to these barriers by avoiding conversations with clinicians about pain, omitting doses or reducing their overall dose of opioid [ 23 ▪▪ , 24 ]. These behaviors can ultimately contribute to inadequate pain control.…”

Nurse-Led Telephonic Palliative Care

“…Up to 50% of cancer patients have opiophobia, fearing addiction or a hastened death 46 . These concerns have only increased because of the opioid epidemic, which has stigmatized opioid use and undermined pain management in persons with advanced cancer 47 . To ensure that patients with severe malignant pain use opioids effectively, these concerns must be addressed.…”

“…46 These concerns have only increased because of the opioid epidemic, which has stigmatized opioid use and undermined pain management in persons with advanced cancer. 47 To ensure that patients with severe malignant pain use opioids effectively, these concerns must be addressed. Given the time intensity required of counseling and guidance, a telephonic nurse may be in a better position to provide the education, counseling, and reinforcement required to address opiophobia than a primary care or oncology office nurse.…”