by Richard Payne, MD, Medical Director, PAINS Project

Richard Payne, MD, Medical Director John B. Francis Chair, Center for Bioethics Esther Colliflower Professor Medicine and Divinity, Duke University
As a young doctor I attended a conference at MD Anderson Cancer Center titled “Treating Pain in a Drug Oriented Society.” One of the conference keynote speakers, Dr. Kathleen Foley, called for the “decriminalization” of cancer pain, noting that (even back then) the American Medical Association, the American Pain Society, the American College of Physicians and the World Health Organization recognized that opioid pharmacotherapy was the mainstay of treatment for patients with cancer experiencing moderate to severe pain.1 Citing surveys that she and colleagues had conducted at Memorial Sloan-Kettering Cancer Center, she noted that fear of addiction and risk of substance abuse were over riding concerns of physicians, patients and families and called for prospective studies of abuse liability and educational programs for clinicians to improve cancer pain management. Such was the world in 1989. Sadly, after innumerable clinical research trials, the development and FDA approval of several long-acting opioids for cancer-related pain, countless educational efforts (industry and non-industry funded) and the dissemination of numerous clinical practice guidelines over the past 36 years, it seems that the proverbial pendulum has swung back to a gloomier time in which cancer patients are once again being denied opioid therapy as are many others who live with persistent disabling chronic pain.
Clearly the tragedy of the current opioid epidemic has negatively influenced clinician, patient and family attitudes about opioid therapy for pain management, even for those with cancer pain. As Susan Glod described in her recent NEJM article, “The Other Victims of the Opioid Epidemic,” she is accused of “making monsters” when she advocates for more aggressive opioid analgesia for her dying patient Jerry.2 Not only is Jerry called a “monster,” but Dr. Glod is complicit in “making the monster.” Although it is true that Jerry also suffers from the disease of addiction, even the recent guidelines on opioid prescribing released by the Centers for Disease Control would not deny opioids to Jerry—and in fact, state explicitly that the guidelines restricting opioid prescribing are not to be applied to persons with cancer pain and those who are in hospice/palliative care.3 Dr. Glod makes a very important point that the “opioid epidemic” has so seized the attention of us all that, “We have placed the blame for the tragic losses of so many lives in so many communities on the drugs themselves rather than on the complex interplay of factors that has led to the current crises.” This distorted thinking is the basis for challenging the credentials and integrity of many advocates for persons in chronic pain who have worked in good faith with the pharmaceutical industry on joint efforts to bring improved opioids to clinical practice, or to create and disseminate educational programs to improve pain management.
The Pain Action Alliance to Implement a National Strategy (PAINS), through its No Longer Silent (NLS) campaign, was created to speak for Jerry and many millions of persons with chronic pain who require more effective treatment for chronic pain. The mantra of the NLS Campaign is that “Better chronic pain treatment will improve the lives of millions of Americans, save billions of dollars, and reduce opioid misuse.” We must advocate for the continued use of opioid analgesics when indicated in cancer pain management and hospice care, and the judicious use of opioid analgesics as part of a process of comprehensive assessment and management of chronic pain. As Dr. Glod’s essay so poignantly reminds us, we cannot allow the tragedy of the “opioid epidemic” to induce us to accept as collateral victims those with cancer pain responsive to opioids or to silence us in this important advocacy work to speak for those with chronic pain.
1 Foley K. The “Decriminalization” of Cancer Pain. In Advances in Pain Research and Therapy, Vol. 11, Drug Treatment of Cancer Pain in a Drug-Oriented Society. edited by C.S.Hill, Jr and W. S. Fields. Raven Press, New York, 1989, p. 5-18
2 Glod S. The Other Victims of the Opioid Epidemic. N Engl J Med 2017;376:22:2101-2102.
3 Dowell D, Haegerich T, Chou R. CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016. Morbidity and Mortality Weekly Report. Recommendations and Reports / Vol. 65 / No. 1 March 18, 2016
Thank you so much for standing up for us pain patients. My chronic pain comes from a genetic connective tissue disorder, so there is no treatment or cure for my slow, but relentless physical deterioration as the collagen holding my body together fails.
I, like so many other pain patients, spent years (1982-1995) trying other therapies (yoga, acupuncture, chiropractic, diet, supplements, PT, lots of exercise) and non-opioid drugs (anti-epileptics and antidepressants) with horrible and intolerable side effects.
As a last resort, I was prescribed opioids starting in 1995. They are still working and I’m lucky to still be able to have them prescribed. After over 20 years, I find it ridiculous and purposely misleading that so many supposed “experts” say they don’t work long-term. Those of us relying on opioids for years and decades know that is simply not true.
Exercise and movement is so helpful for pain, but without opioids I’m in too much pain to do such self-care. I’m lean (110 lbs) and active (walk over 2mi/day), I do not catastrophize, and I only eat healthy foods, so I’m doing all I can for myself. This would all be impossible if my body-wide pain weren’t controlled by opioids. By “controlled” I mean it’s still painful, but tolerable, to walk, do light housework, care for my dog, occasionally visit a friend, and use a computer.
I used to get along with my painful condition and I managed to create a life within the boundaries of my pain by using opioid medication. But as I watch legislators and bureaucrats impose increasing restrictions on the most effective pain medication that’s been used for thousands of years, I’m getting more and more fearful that the little life I’ve created for myself will come to an end.
When I once was prescribed only 25% of my normal opioid dose, I ended up living on the couch and in bed for a few months and my pain seemed to increase the longer I couldn’t exercise. I lost considerable physical conditioning during those months that I’ve never been able to recover, thanks to a doctor insisting “opioids are BAD for you”. No, opioids are good for me because they allow me to have some quality of life.
My life was saved by the addiction counselor I was finally sent to when she determined that I was in no way addicted, just in pain. I went to a new doctor with her statement in hand and resumed an effective dose of opioids. I know I’m incredibly lucky to have found a reasonable doctor, but I fear these impending laws against opioid use will eventually force her hand and she will have to stop prescribing me my life-saving opioids.
I say life-saving because I have determined that a life of miserable pain lying around the house is not really living, only existing. At 60, I’m prepared to leave this life when my pain becomes intolerable. At 88, my mother with the same painful genetic syndrome is only allowed enough opioids to ease her pain for two 3-hour stretches daily. The rest of the day her pain is literally unbearable and she now contemplates ways to end her life as well.
I hope doctors like you can find a way to end this insanity of trying to prevent heroin overdoses by taking away pain relief from patients that have been using opioids successfully for years. We need someone of authority to push back against the insanity of this drug-war against patients with intractable pain.
Please help us – we’re dying!
Thank you for sharing your story. We are working through our No Longer Silent initiative to change the current norms, beliefs, attitudes and perceptions of the public about the disease of chronic pain and to establish and promote comprehensive pain management as the standard of care.
Many chronic pain advocates fear that efforts to address the opioid epidemic will have significant unintended consequences and make their lives even more challenging. We are working to ensure that both crises are addressed without adversely impacting those who live with pain.
My heart goes out to you and your Mom. I to have been on pain meds going on 10 years.it took me a good 6 1/2 yrs to finely say enough is enough toy orthopedic surgeon and my pain manager Dr. For years they kept me going back and forth to them each of them saying the second thing. You take care of her, no you take care of her then it was injections one after another. Then I had a discogram done ( won’t ever do again because they are very painful) which I tested positive on all three levels on L4 L5 S1 . So I take those results to the orthopedic surgeon and he says we’ll there is basically nothing that I can do for you. My heart sunk. So now back to my pain manager and he said he could do a trial of the spinal cord stimulator. I had heard of it and on January 9th of 2015 I had the trial put in had it for five Wonderful days and didn’t look forward to having it taken out. It worked that well for me. So had it taken out and on February 25 of 2015 my orthopedic surgeon put it in. Things went well for bout 6 months then the stimulator started acting up. I’d have to increase the unit to a very high level to try and get any relief. Had it reprogramed four times and nothing work right, so I told the Dr you have got to do something please.. well on October 11th 2016 I went in for my fusion. Recovery was had since I just didn’t have one wound I had three. Took me awhile to get going but I did and I was able to get off pain meds. Life was great , then the hip pain started bad on both sides but the left is the worse. Then my back started hurting as well then the pain like before surgery hit me but on the other side the left. All the way toy toes yet again off to my primary Dr cuz I needed a referral to go see the orthopedic surgeon. With that said my husband is retired military. So we have that insurance ok. I tell my primary I want to go back to my orthopedic surgeon she said she doesn’t think I’ll be able to go back to see him that I’ll have see a orthopedic surgeon on post… WHY??? so I go the new Dr he says oh nothing is wrong this just happens after a fusion. No no no I said. So then they send me back to my pain manager. And here we go yet again what to do with her now. I’m fed up.
Julie – Thanks so much for sharing your story as well. Those of us who live with pain have such similar experiences – like we’re on a roller coaster and can’t get off. There is hope for all of us, but as you’ve seen it’s a very long road. We hope you’ll read some of our stories of people who have ridden that roller coaster and have finally found a way to live full lives again – with their pain – and take a break from the roller coast for a while.
We’re still developing this section, but we’d love some input on whether you find these stories of hope helpful and encouraging. https://painsproject.org/aipm/faces-of-pain/
Sometimes cancer treatments cause pain and other issues, either at the time or long term, that are painful. The cancer itself, although stage 4, only caused me discomfort. The events that occurred during and after treatment are what cause my chronic pain. The CDC only mentions “active” cancer being suitable to treat with opiates. It’s been near two decades now and would not be considered “active”. It’s in remission, as my type never gets called, cured. The guidelines are flawed in this and other areas. I’m certain that my chronic pain has been greatly lessened by long term treatment with opiate management. Having proper pain management has allowed me to have a more active, productive life. The medication doesn’t take away all of my pain, but it does keep me out of crisis and out of the emergency room. There are many painful conditions that people live with, that are not related to active cancer, hospice or palliative care. No one disagrees with the judicious use of these medications, but many disagree with limiting or denying access to medication to pain patients, who are quite stable and doing well on medication, in response to what is referred to as the “opiate epidemic.” We have many struggles In managing our disability day to day , proper treatment and pain management shouldn’t be a struggle. We are not the problem. Our pain specialists are not the problem. We do need physician’s to speak out and support us. Especially those who can attest to our quality of life, with and without opiate therapy. Thank you, from the bottom of my heart, for standing with us and continuing to fight for our quality of life, under such scrutiny, as the pendulum swings without regard toward needles suffering of non active cancer pain patients everywhere. You are my heroes.
Dear Zyp.. Your story is mine also.. Gentle hugs and prayers for us all..
The NLS program has a great perspective but there is a down side. Myself, as well as many other chronic pain patients live in a type if fear that few recognize. Even though as patients we are guaranteed rights when it comes to pain issues the “squeaky wheel” doesn’t always get the grease. I am a registered nurse who has always been a patient advocate but have found myself unable to stand up for myself. It’s very risky to ask for changes in your pain protocol when you don’t trust your doctor or his response. After being released from one doctor for not wanting more injections due to his procedural tactics of using a back room of his clinic, no one introducing themselves, and the continual threats that went with urine testing I am now with another doctor. But we all know that each time we move we are labeled a “hopper”. Never in my nursing career would I have thought that a pain patient would be treated so poorly. I have concerns with issues regarding my medications and injections but live in fear of presenting them to the doctor I’ve been with for a year. Before being shown the door by the last I had been with a physician at a back facility for 10 years. They opted not to do pain medication management due to the govt control and I had no idea how their decision would affect my life. It’s strange how as a nurse I had no problems talking to doctors concerning a patient’s pain management but within a few years I’ve become a person living in terror. I know it’s partly due to the constant aggravating pain that I know will be part of my life should I lose the medication but it’s vastly due to the fact that most pain management clinics or facilities are under the care of an anesthesiologist, who say what you will, just do not have the training in dealing with patients as a one on one ability. Previously, in their field, they would talk with the patient for 3 minutes prior to surgery or on the phone and never deal with the patient face to face again. Those are the physcians that we are subjected to for something as complex and major as chronic pain., We, as pain patients who fill out a form during each monthly appt asking our pain level, constipation, anxiety and depression find that we could write down we are fighting suicidal ideations and strangely enough no one reads or comments about it. It’s done for legality reason not for patient care. It truly saddens me that this is what my life has boiled down to. Please understand, I do exercises, stretches, water aerobics and diet to fight for my health but my mental health is what I battle the most. To go from a strapping, patient loving nurse to a woman who can no longer work and provide for my family which does include a mentally disabled son, is slowly eroding away my life. The pain itself erodes our bodies. Now add to that the minimal care we get due to the political fight with the govt and it’s one sided story of addiction and dependency. Those 2 words have different meanings but for what ever reason our illustrious govt can’t separate them. I forever will be no different than the Oxy addict on the street who lives day to day stealing from others to fix their habit. I refuse to allow those who run stats for figures on addiction to clump me into that group. Everyone is out to make money off the addicts proven by the advertisements on TV for rehabilitation paid for by insurance and the govt. In case you didn’t know, that’s my tax dollars. Isn’t it strange how the govt is spending all of this money to fix the opioid addiction and as of late now the rise of Vitamin K (ketamine)and synthetic marijuana use is plaguing those who were just previously using opioids. It’s a proven fact that humans with addictive personalities will use whatever they must to get the “feel good” buzz. How does that make it right for so many lives to be ruined because of those who want to get high? Am I to be bed ridden because of those who do the drugs illegally?. If insulin became known as a “get high” drug would diabetics lives be forfeited? Remember the Prohibition and the old documentaries about marijuana, which is a whole different story in itself. What it comes down to is those people making the rules and passing the laws are not chronic pain suffers. In fact several of the studies done on what they felt needed to be developed for this issue they declared had a few doctors involved, some politicians but not one pain sufferer. They invited those sufferers to voice an opinion but did not listen or take into account one person’s ideas.
My final statement is an echo of our last president. “Opioids are more dangerous than ISIS.”
Said by someone who didn’t suffer and was fed improper info by his surrounding group.