Opioid stigma is keeping cancer patients from proper pain control – Stat News – By Sara Ray and Kathleen Hoffman – July 6, 2018
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.
And we’re heading back to that situation as fast as we can, with one rule after another being rushed to implementation to prove its sponsors are “doing something about the opioid crisis”.
But now that even cancer patients are being affected, I hope the rest of the country can see that withholding pain relief is simply torture and has no place in a modern-day healthcare system.
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
- One third of 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.
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.”
Welcome to our world, the world in which any kind of chronic non-cancer pain is treated as more of an attitude problem than a medical problem requiring treatment in and of itself.
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.
Don’t worry, cancer patients, those concerns disappear when you’ve been in pain for years.
When you’re in enough pain, you don’t care about anything else but relief; social approval is a luxury that patients in pain cannot afford.
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.
To me, this is the real outrage, that our government and even our doctors are believing the nonsense being spewed by the anti-opioid activists (PROP).
Anyone who does their own thinking will quickly realize that the dangers of addiction arising simply from an opioid prescription are ridiculously overblown in the media, yet so many doctors have bought into this false propaganda.
Our government publishes data that show prescription opioids are NOT the problem, yet that data remains firmly ignored. Public figures and the media are quoting alarming statistics from 2008 – ten years ago!
Instead of going after all the clandestinely manufactured fentanyl being added to and making poisonous all kinds of illicit drugs, the incessant repetition of the phrase “prescription opioids” is used instead of the accurate phrase “illicit fentanyl”.
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.
I’m disgusted at how our “medical providers” are blatantly lying to us.
They are smart people, they made it through med school, yet they now act like children who believe the fairy tales they are being told about “heroin pills” (so cleverly phrased by A. Kolodny).
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.
The above is how pain management is supposed to function, but only a few of us (like me) are lucky enough to still have access to such professional and effective medical care.
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.
There’s a lot of PROPaganda being spread that there is no “legitimate use” of opioids at all beyond a few weeks after surgery. (A. Kolodny leads the pack)
The history of mankind proves otherwise, as lingering pains have sent humans to finding relief over the eons, first from the raw opioids in poppy plants, then from refined and increasingly powerful opioid synthetics.
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.
This article itself pointed out earlier that folks are being “educated” with fairy tales, not facts, so “education” is actually contributing to the problem instead of alleviating it.
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.
Author: Sara Ray is senior director of research at Inspire, where Kathleen Hoffman is senior health researcher and writer.