History is repeating itself. Twenty years ago, a pain management crisis existed. As many as 70 percent of cancer patients in treatment at that time, or in end-of-life care, experienced unalleviated pain. Identified as a major medical problem, poor pain management became synonymous with poor medical care. In fact, prescribing adequate pain medication became mandatory for hospital accreditation.
The medications used to treat moderate to severe pain among people with cancer are the same opioids helping fuel today’s opioid crisis. Though it has turned a much-needed spotlight on the overprescription of these medications, it is overshadowing their underprescription among people who really need them, especially those with cancer. Two-thirds of individuals with metastatic cancer and more than half of those being treated for cancer report experiencing chronic pain, and 1 in 3 cancer patients do not receive medication appropriate for the intensity of their pain.
To get a sense of how people living with cancer are being treated for pain at a time when there is a growing stigma associated with opioid use, we reviewed 140 public posts on Inspire, the health social network we work for, written by 100 people with cancer and their caregivers. Although the writers spanned many cancer types, they primarily represented lung, bladder, and advanced breast cancer. In general, they described facing stigma from both health care providers and society in general.
Some writers said their doctors now hesitate to prescribe opioids due to concerns over addiction. Restrictions on refills and their timing are barriers to consistent use of medications to treat pain. Many of the writers said they felt they were being treated like drug seekers when their pain needs are real and management is necessary. Their experiences with access were described as: “makes me feel like a druggie,” “I use a very low dose,” “treated like a pill seeker,” and “I am not part of the oxycodone EPIDEMIC.”
One individual wrote, “I have been made to feel like a criminal – from my doctor’s office…to the pharmacy worker who said very loudly to other patients in line that I was sure taking a lot of opioids. I was humiliated. I have been afraid to ask for pain relief as it seems like I am doing something wrong. During my cancer journey, I had to have a hysterectomy without pain relief…Hospitals feel they are opening the door to opiate abuses and my surgeon would not authorize pain medicine. I am terrified right now to ask for a refill on my pain medication.”
While the stigma from health care providers can affect cancer patients’ access to pain medications, it is the stigma from society that affects their use. Many writers indicated that they feared becoming addicts and worried about withdrawal symptoms. They also offered concerns about what use of high doses or multiple daily pain pills says about them.
These misperceptions aren’t alleviated by what patients are learning about opioids. Varied messaging about addiction and dependence from the media, government, and even health care providers seems to be leading to confusion and misunderstanding among cancer patients. Some of the Inspire writers said that health care providers had told them that cancer patients who need increasing doses are addicted; others wrote that their providers said they cannot become addicted because they “don’t get high.” Some providers say those who need increasing doses are addicted, while others say it means they are becoming tolerant or dependent on drugs. These contradictory views leave patients unsure, with many of them opting to live with pain rather than risk addiction.
We read several posts indicating that fear of addiction is causing family caregivers to withhold prescribed pain medications from those they are caring for. Responses to these posts advised against doing that, offering the opinion that managing pain is more important than addiction. While caregivers take this advice seriously and often follow up with a physician, we don’t know what they finally decide to do.
Some of the posts advocated for proper, controlled pain management, arguing that stigma should not interfere with care decisions. Their basic message to other group members is: “Don’t feel guilty for taking pain medication.” They recommend seeking out clinics and teams with expertise in pain management, cautioning that oncologists may excel in their treatment of cancer but are not necessarily knowledgeable about treating cancer-related pain.
Inspire members who wrote that they are not feeling stigmatized expressed confidence in their opioid use, derived from having knowledgeable pain management physicians who are not only experts in the field but who take time to explain pain management strategies and who include patients in decision making. These patients feel they are part of a team that is both instructive and supportive, and experience fewer struggles with access or worries about how to take their medications.
Two decades ago, the medical community woke up to the fact that far too many people with cancer weren’t being properly treated for their pain, sparking a movement to improve pain control that may have helped give rise to the epidemic of opioid misuse now affecting the country. In addressing this problem, the pendulum has swung too far, attaching a stigma to using opioids for legitimate reasons. While individuals treated in pain management clinics or by physicians specializing in pain management may be inoculated against or protected from this stigma, not everyone with cancer has access to these professionals.
What can be done? Education and clear messaging seem to be key. Pharmacists, oncologists, family practitioners, and other clinicians who care for people with cancer need better education about pain management. So do patients with cancer and their caregivers. Pain management awareness campaigns aimed at both patients and physicians could help counteract the stigma and encourage practices that do not hinder legitimate access or use.
People with cancer who need medication to control their pain are getting lost in the middle. They need support, not stigma.
Sara Ray is senior director of research at Inspire, where Kathleen Hoffman is senior health researcher and writer.