Opioid stigma keeps cancer patients from pain control

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.

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.
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10 thoughts on “Opioid stigma keeps cancer patients from pain control

    1. Zyp Czyk Post author

      You have alluded to it in the past, so perhaps you could post it as a comment on the article in the National Pain Report: http://nationalpainreport.com/cdc-opioid-prescribing-guideline-unintentional-consequences-8836710.html

      I read through the 99 comments this morning and it’s a collection of horrors. Perhaps we could figure out some way to get all these stories noticed and written about by more mainstream media, like the article in USA Today: https://edsinfo.wordpress.com/2018/07/04/pain-patients-getting-new-attention-from-top-at-fda/

      Liked by 1 person

      Reply
      1. canarensis

        Great ideas & links, thank you.
        I can’t offhand remember where (sorry) we had the chat about my friend in prison who said he had more civil rights than we do …but I thought I’d really blow your day by passing along somehting I just read; Robert Rose Jr is talking about the gov’s attorneys filings, & apparently 2 of their contentions are that he (Rose) 1. has no Constitutional Right to healthcare, & 2.
        only convicted criminals in state/federal penal systems are guaranteed a right to adequate healthcare.
        Wow. Guess that puts us in our place.

        Am scrambling around trying to figure out how to come up with the money to keep the electric on (vet visit last week did me in). Having a very hard time not just packing it in.

        Liked by 1 person

        Reply
        1. Zyp Czyk Post author

          I think Mr. Rose may be able to make a dent in this wall of opiophobia we’re dealing with. (He’s another ATIP member)

          I really think there will be a course correction eventually, but it will take months, if not years. I totally understand your urge to “just pack it in” when even the non-pain parts of life become challenging . Often our energy and life force are so drained by pain that dealing with even the smallest difficulties becomes impossible. Been there, felt that way, but we can always “pack it in” tomorrow if we still want to, and this makes procrastination your friend :-)

          I hope you can hang on until things change.

          Liked by 1 person

          Reply
          1. canarensis

            Thank you, friend, for the encouragement to soldier on a while longer. Of course, I can’t do anything anyway as long as my fluffy little Eskimo dog is counting on me; no way would I ever abandon him*. But it’s funny how procrastination can become a positive thing, isn’t it? Back to all those talks on “pacing” they gave in my full-time pain management program.

            I’ve been trying to help out Robert Rose’s campaign, writing letters, & inundating all sorts of journalists to try & get them to write about him, etc. A brave, determined soul (like how I tend to think of Marines).

            I’d been hoping that we’d course correct as I thought happened in BC, but I read just this afternoon that the “loosening” of their draconian rules was basically PR propaganda & that nothing had improved for pain patients up there, despite stories to the contrary. –dunno what the hell to believe about that.

            Best to you, and here’s to procrastination!
            :-)

            *he went thru a bad pain episode this weekend (mystery back problem) & it reminded me all too clearly how much worse it is when he hurts than when I do! But he’s much better now :-)

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            Reply
  1. Scott michaels

    A: SEVERE PAIN IS SEVERE PAIN.

    B:IF ITS LIFE LONG PAIN FROM A PROGRESSIVE DIAGNOSIS THEN YOU WILL REMAIN IN CRIPPLING PAIN UNTIL YOU DIE, HENCE THE INCREASE IN SUICIDES FROM PAIN PATIENTS.

    C: THE CDC IN THIER INFINITE LACK OF WISDOM SHOULD HAVE HAD A PLAN FOR ALL PAIN PATIENTS INSTEAD OF THEM COLLUDING WITH DEA AND PROP TO PUT GUIDELINES OUT THERE WITHOUT ANY REGARD FOR THE100 MILLION LIVING IN CHRONIC PAIN AND 20/30 MILLION IN SEVERE CRIPPLING CHRONIC PAIN.

    D: OPIOIDS WORK FOR THOSE OF US THAY HAVE BEEN SUCCESSFUL WHETHER HIGH OR LOW DOSE
    E:WITHOUT ANY SUPPORT FROM THE MEDIA AND POLITICIANS ON THIS BAND WAGON
    TO JUST IGNORE US IS DISGUSTING AND I AM EMBARASSED TO BE AN AMERICAN.
    JUNKIES ARE JUST THAT. THE GOVT CAN WASTE 5 BILLION DOLLARS INTO ADDICTION AND RECOVERY, HOW EVER WITH A 3% SUCCESS RATE, UNLESS THE JUNKIE HITS BOTTOM AND IS WILLING TO CHANGE EVERYTHING IN THIER LIVES WILL JUST BUY MORE LUXURIES FOR THE OWNERS OF THESE SO CALLED REHAB FACILITIES.

    E: ALTHOUGH WE NOW KNOW THE CDC LIED AND THE DEA ARE JUST BULLIES AND COWARDS WITH ZERO EDUCATION ABOUT PAIN OR ADDICTION, THEY MUST GO AWAY. PUT ON YOUR BIG BOY PANTS AND GO TO COLUMBIA CHINA MEXICO ETC AND STOP THE DRUG CARTELLS FROM MAKING HEROIN AND ILLEGAL FENTANYL. LETS NOT FORGET ABOUT COCAINE

    F: .08% OF OVERDOSE DEATHS WERE FROM PRESCRIPTION PAIN RELIEVERS THAT WERE PRESCRIBED TO THE PATIENT. THE REST WERE PEOPLE STEALING THE DRUGS OR BUYING THEM ILLEGALLY. THE REST OF OPIOID CONSIDERED DEATHS WERE FROM ILLEGAL DRUGS.
    G: 99.99% of all pill mills HAVE BEEN GONE FOR ABOUT 8 YRS AND THE BAD DOCTORS RETIRED OR WENT TO JAIL.
    THE REMAINING DRS ARE INTIMIDATED AND THREATENED DAILY BY THE DEATO STOP PRESCRIBING PAIN RELIEVERS OR THEYLL TAKE ALL THIER ASSETS AND JAIL THEM.
    UNTILTHE PUBLIC IS MADE AWARE OF THE TRUTH, RECIEVED CURRENT NUMBERS NOT FROM 1O/17 YRS AGO WHEN HEROIN WAS NOT THE IN THING. Taliban killled poppy growers in aphganistan where now the biggest crops are ignored by law enforcement. Out govt wants them making heroin.
    Thats why theyre going after pain relievers the govt actually needs more heroin users so aphganistan can survive. WAKE UP
    JIF ITS YOU OR YOUR CHILD OR PARENT IN LIFELONG UNRELENTING PAIN,YOU WILL BOT BECOME AN ADDICT IF THE DR GIVE YOU THE REIGHT MEDICINE AND MOST IMPORTANT THE RIGHT DOSE.
    FORCEABLU CUTTING DOSAGES ONLY INCREASES THE PAIN. HUMANS ARE NATURALLY SELF PRESERVANT, THERE FOR TAKING AWAY SOMETGING FROM ANYBODY THAT WAS PROVEN TO WORK WILL CAUSE THESE PEOPLE TO EITHER SRUG SEEK ILLEGALLY OR TAKE THIER LIVES. SINCE MOST OF US WONT SEARCH THE STREETS FOR ILLEGAL DRUGS. WE LAY IN BED HOPE TO DYE AND MANY ARE TAKING THIER LIVES.
    EVEN IF WE DO BECOME ADDICTS, WHICH WE DONT, ID RATHER BE A LIVE ADDICT. IN THE PAIN WORLD POLITICIANS CONFUSE ADDICTION AND DEPENDENCE. THEY DONT ACKNOWLEDE THE DIFFERENCE. WERE NO DIFFERENT THEN A DIABETIC OR A HEART PATIENT THAT MUST TAKE THIER MEDICINE FOR LIFE.
    I WOULD LIKE TO CLEAN MY HOUSE AGAIN, BE INTIMATE WITH MY WIFE AND VE A PRODUCTIVE PART OF SOCIETY INSTEAD OF BEING IN BED 22/24 HOURS A DAY.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      You are so right!

      Perhaps the most valuable thing I’ve lost to my pain are the long hugs and bedtime cuddles with my hubby. I can relate to how we lose the physical intimacy with our beloved just when we need it most.

      Liked by 1 person

      Reply
      1. canarensis

        You have my sympathies; that has to be wrenching for you both.

        I’m long apart from my true love (good thing, we’d have both gone totally nuts b/c we just could NOT live together), but I do recall what the good stuff was like. I at least can snuggle with the dog, and when I get really bad off he snuggles me but never feels angry or hurt when i can’t respond beyond a weak pat. He gets bored sometimes, but always forgives and always, always is there in an unselfish way that no human, no matter how amazingly wonderful, can manage.

        Of course, the conversations can be a bit lacking…
        ;-)

        Liked by 1 person

        Reply
  2. Ivy

    I have chronic pain non cancer. I’m so lucky to be treated by my doctor. I honestly would rather be dead if I didn’t have pain meds. People don’t realize how pain controls your life. Even though I’m treated I still experience pain just not as intense. Am I addicted to it? Mentally no physically yes but it doesn’t mean I’m a addict I’m just a person with pain!

    Liked by 1 person

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