Fear and stigma surrounding opioids are prompting some cancer outpatients to discontinue or taper their use of prescribed opioids to manage their cancer pain, according to a new University of Pennsylvania study led by Penn School of Nursing Associate Professor and LDI Senior Fellow Salimah Meghani, PhD, MBE, RN, FAAN.

Published in the Journal of Pain and Symptom Management, the study, “When Patients Take Charge of Opioids: Self-Management Concerns and Practices Among Cancer Outpatients in the Context of Opioid Crisis,” describes how patients self-manage their pain to balance their fear of addiction with the need for ongoing pain relief.

Self-management approaches

The investigation found that some outpatients were “reducing the opioid dose by cutting pills; self-tapering off opioids; using extended-release/long-acting opioids on an as-needed basis; mixing over-the-counter, non-opioid analgesics; and using illicit drugs to avoid ‘harder medicines’ (opioids). Many patients preferred non-opioid treatments for pain but invariably faced access barriers.”

The study concluded that, “risks related to self-management of opioids among cancer outpatients, including potential overdose risks, need urgent attention. Interventions are needed for improving clinician-patient communication, patient education, safety, and access to effective non-opioid alternatives.”

The recognized importance of opioid medications in many areas of cancer care is underscored by the fact that oncology patients are one of the few groups excluded from most state legislation and policy programs aimed at reducing physicians’ use of opioid-based drugs.

Major media pickup

Like this latest research, which was the subject of a Philadelphia Inquirer article, Meghani’s previous opioid-related studies have been featured in major national publications, including in an October 2019 New York Times front page story detailing the Department of Health and Human Services’ new opioid guide for primary care physicians. That new HHS guide is aimed at curtailing “abrupt tapering or discontinuation” of opioids for high-pain cancer patients in legitimate need of them.

Meghani’s previous studies on insufficient opioid prescribing have also been the subject of stories in the Washington Post, Consumer Reports, and the The Guardian.

Her latest work focuses on a different subset of cancer outpatients who, responding to their own fears of addiction, have either ceased taking or dramatically reduced the dosage of their opioids, or adopted alternative medicinal practices of their own design.

‘Missing and neglected’

“Most current policy and clinical efforts are concentrated on over-prescribing and clinicians’ opioid prescribing practices,” said Meghani. “Missing and neglected from these efforts is the monitoring of how patients self-manage and adhere to prescribed opioids and potential risks to patients of underuse and inappropriate use of opioids.”

“Both cancer itself and many of its treatments are the source of high and continuous levels of pain,” continued Meghani. “Adequate, appropriate medication is crucial because excruciating pain is a serious stressor that can effect both a patient’s overall health and quality of life. The concern about opioid stigma is yet another major stressor for these patients beyond the unrelieved pain itself.”

Meghani is Term Chair of Palliative Care at the Penn School of Nursing, and Associate Director of the NewCourtland Center for Transitions and Health.