The Stigmatized Pain Doc

The Stigmatized Pain Doc

Editor’s Note: This is the second of a two part series on the stigma of chronic pain. This installment features the stigma of being a pain physician. The first installment, written by Terri Lewis, PhD look at the stigma from the patient point of view. We invite your comments.

Stigmatization is alive and well in the world of chronic pain.  In fact, the motto of the Pain Action Alliance to Implement a National Strategy (PAINS) is to “de-stigmatize the stigmatized.  The reasons for stigmatizing the person with chronic pain are way too simple.  They have a problem which defies all treatments and reasonable “objective” explanations.  In so-doing, they are a thorn in the side of medical theory.  Rather than accept that the square peg the patient presents does not fit into the round hole of our theory and re-working our theories, we blame the patient for their problem and abandon them.  If you have a problem you can’t handle, what better way than to be rid of it than to ignore it or sweep it under the rug.

David_J_Nagel_MD_2

David Nagel, MD

Unfortunately, the problem is still there, festering.

Those who suffer from pain are fully aware of what I just said.  That is not what I was asked to write about, though.  I was asked to write about the stigmatized pain management specialist, something that is becoming an out-sourced, dying breed.  In thinking about this, I am reminded of an old joke I heard in college:

Q:  How many pre-meds does it take to screw in a lightbulb?

A:  Two.  One to screw it in and the other to kick the chair out from under the first pre-med’s feet.  

For our discussion, I would replace pre-med with “people” and the answer with 19;  that being one becoming a pain management doctor and the other 18 various entities in our society which are more than willing to take him or her down.

Very early in my physical medicine and rehabilitation training, in 1986, I was confronted with a patient with chronic back pain.  He’d been surgically mutilated 5x, and the surgeon responsible for the 5th “wanted my expertise.”  In reality he just wanted to get rid of the medical “hot potato,” one way too hot for him to want to hold.  When I first met the patient, the surgeon welcomed me with open arms and thanked me for my service to humanity and all sorts of other things.  The patient was in absolute misery.  What the surgeon neglected to tell me was that when they placed the pedicle screw, they put it right through the nerve root.  I found this out later from someone who preferred to remain anonymous.  It was not the patient that was “screwed up.”  In 1986 it was definitely not cool to prescribe opiates.  My mentors told me not to do it.  However, Kathy Foley and Russell Portenoy were just starting to challenge that paradigm, first for end of life care, then for chronic pain.  I read their article published in 1985.  I had nothing else to offer this man.  His spine was a mess.  His nerve was destroyed.  So I defied the sages and started him on opiates.  

Two things happened.  First, the patient got better functionally.  Second, the surgeon and his entourage returned to chastise me for addicting him to pain medication.  I recall informing them that they had turned the patient’s care over to me.  Obviously they had not done such a great job, so I thought other directions were in order.

Nothing in life is ever that simple.  I saw this man as someone who’s life was in jeopardy and cost/benefit assessment demanded extraordinary steps.  So I did something which I believed to be extraordinary.  Short term success is not always maintained in the long term.  As Dr. Portenoy has said, there is a sub-set of patients who can do well with long-term opiates management and there are others who can’t.  Vigilance by all is necessary in making this determination, and not a little bit of courage.  

Unfortunately, this scenario plays itself out every day in the world of pain management in so many different ways and for several reasons, and not just related to opiate management.   While many are thrilled someone would be willing to care for these medical pariah’s, they or others in our culture are more than willing to criticize or, much worse, punish the doc when he or she fails to follow societal expectations or the pre-conceived notions of those who choose to criticize.

Why does this happen?  For four basic reasons:

  • There is no universal understanding of chronic pain.
  • There is no universal solution to the problem ;  in fact, there is no solution
  • There is no universal definition of what chronic pain management actually is.
  • A Physician is judged how well his judgment follows the evidence base.  What happens if there is no reliable evidence base?  What happens if a problem is so complex that that it defies study? Who defines what the reliable evidence base actually is.

I explore these issues in detail in my book:  Needless Suffering; How Society Fails Those with Chronic Pain (University Press of New England, 2016).  

I would like to close with an illustrative vignette.  A few months ago, I had a conversation about the opiate abuse epidemic with a local sherriff.  The big problem in our state is heroin.  I am scratching my head trying to remember the last time I prescribed heroin, and I just can’t seem to remember ever doing it.  Still, he blamed all those bad pain docs and the pain patients.  He told me that it is too bad they couldn’t just suck it up and deal with like they did in the old days.  He seemed oblivious to the fact that patients have been using opioids, cannabinoids, alcohol, and other things for millennium, totally un-regulated until the past 150 years, often under their own supervision because they were unable to receive care.  John F. Kennedy used Demerol and Valium to control his pain while president.  The attitude of this sheriff, which was based on his pre-conceived notions, is rampant in our society.  Unfortunately, many with this attitude occupy a position in which they can control the behavior of others.  Somewhat fortuitously, the next day a police officer arrived in my office suffering from severe pain due to a herniated disc.  He was unable to receive any medication to allay his suffering.  He told me: “I will never again question anyone’s pain.”  In retrospect, I wish I had given him the name of the sheriff and suggested he have a conversation with him.

The true morbidity and mortality from chronic pain, whether treated or not, are not known, but staggering and dwarf that due to prescription drug abuse.  Public policy must be balanced and respect the problems created by both.  However, stigmatizing those who suffer and those who minister to them is counter-productive and must be stopped.  It is exciting that the National Pain Strategy (NPS) addresses many of these issues.  I pray for its success.  

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: David Nagel, MD

There are 12 comments for this article
  1. Lisa at 6:44 pm

    Thank you for a great article and a Thank you to Dr Bagel. I am the VP of CPSFoundation and would love to network with you both. Please feel free to contact me. Keep up the great work!

  2. Deb at 9:38 pm

    Thank you for the petition2congress information. Please people go sign this. It is really easy to do. I was looking thru some of the petitions and the petition to make it illegal to bait bear in the US has more support than the petition about pain management. How can that be? Let’s try to make our voices heard. Something has to be done.

  3. Pam at 4:55 pm

    Kristine, I am very interested in the book you are writing! Maybe those in congress will wake up and realize the ripple effect that is being caused by them stripping us of our meds! I often think, this is the governments intentions all along, taking away much needed meds from thousands and thousands of legit pain sufferers, making them seek pain relief on the streets! The drug cartels must be raking in millions! They aren’t stupid and know the demand is very high for narcotics. The price for one pill, from what I’ve read on the petition I signed , is what it cost me to get a whole bottle from the pharmacy. Who the heck has that kind of money!?!? Of course the heroin is going to increase dramatically, its much cheaper and will ease a persons pain. Ive never done it, nor will I, but this is what the government is forcing legit patients to do. Is that thier intentions all along?? What’s in it for the government/DEA & the drug cartel?!?! ,, I really feel that the doctors who took that oath. who went thru years of medical school to help those who exist in pain, who are not afraid to stand up to the terrorists we have running this country and the DEA, I really think the good doctors out there need to ban together and fight for us! Im sure there would be thousands of us alongside them. Not sure if any of you are aware of the huge petition2congress page… Please google it there are way to many heartbreaking stories, one after another and growing rapidly every day. its called. Petition2congress first do no harm. How can those in congress continue to ignore the thousands and thousands of letters! Best of luck to you!!

  4. Diane Succio at 4:51 pm

    Thank you so much. After 5 surgeries and a stimulator I am worse off than ever. Thankfully after a year of pain mgmt, I had to tell and holler to be heard. Now she actually listens and even respects me. I have been refered for a pain pump but really that is just 1 more time they cut my body. It already looks like a road map with all the scars. It scares the begeezes out of me to be cut 1 more time and again no guarantee.

  5. Michael H at 2:27 pm

    I have spent so much time worrying about things i can not control. I hope that someone like the author of this article can speak for us to the cdc and the other evil sources that are trying to bring us back to the pioneer days. Our pain is real and its real bad or or doctors would not have prescribed them. I k ow mine wouldnt. He put me thru a multitude of tests shots and epidurals along with physical therapy and other forms of pain relief. This is what works. It has worked for over 7 years. To take it away would be like taking insulin away from a diabetic or taking a prostic leg from an amputee. Without my medicine i am stuck in bed in agonizing pain. This would not be a life. I was there once before i seeked help. We need advocates that are in a position to truly help

  6. Pam at 2:06 pm

    Dr. Nagel, Thank you for standing up for the chronic pain sufferers thruout this country. I so wish you were in NJ, as I’d be switching to you for my healthcare. You should be on cspan and every tv channel out there raising awareness to those who are legit patients and the living hell we are being forced to live in. I’ve been so overwhelmed since fulling my meds this past Thursday. As I had stated in part 1, I was on the same dose of oxycodone 30 mgs for years, along with morphine sulfate ER. Many years ago, after trying all other options my body coukd take, I was on oxycontin 30mg every 8 hrs, oxycodone 30mg every four hrs and one soma at night. I had a quality of life then I knew what it was like to smile, to shower daily, take walks, go on daytrips, watch my sons games, the list was endless. I was told Id be in pain the rest of my life as there is no cure. I was told ill probably be on meds the rest of my life. It took me so long to accept it all, but I did. My pain went from way over a ten down to a MANAGED 3..I had to switch drs four years ago because the one I was seeing is no longer in practice. I about wanted to end my life in trying to find a dr to take over. I was told they “don’t treat addicts” or “we dont prescribe narcotics (even though on the website u der patient forms theres an opiod contract) or we arent taking new patients (even though just five mins prior to me telling the secretary what meds I was on they were accepting new patients). It’s a horrific nightmare trying to find someone.!! Anyway, my pharmacist referred me to the neurologist, who Ive been with for four years now. Upon my first visit with him, I got a goid feeling about him. He seemed to listen was kind and compassionate. He told me he would take over my care BUT he coukd not do the oxycodone every four hours, had to be every 6 hrs. There was no way in hell I could go six hours so I had myself on a schedule where I woukd take the oxycontin at 4am, then start the oxycodone at 5,9,1pm and again at 5pm. I needed to get thru the day as I am a single mom and my kid needs me. ( oh the oxycontin was also switched to 60mgs,one in morn, one at night). I would take soma around 8:30pm and boy did it help to ease the tension and spasms thru out my back and allowed me to sleep. That was the only muscle relaxer that worked for me and I have tried plenty of them. The soma was taken from me about a year ago, dr told me he cant write it with the other two. There went my sleep. This past March he came in and said he had to cut all his patients back due to new restrictions/guidelines by the DEA, CDC and our government, So the oxycontin was switched to morphine sulfate ER, the oxycodone LOWERED to 20mg every six hrs. My pain is thru the roof! I do not sleep or eat. For the past eight months my dr has been playing medication roulette with my health. I feel like hes just giving me anything to try and shut me up. Ive called him god only knows how many times, in tears from the excrucuating pain. I cannot help he has chosen to go back to the beginning, where I was at in 2008, trying all this crap meds that dont work. Ive wasted tons of money that I dont have, Im on perm. disabilityabd hardly get support for my son. What gets me so mad is that I went from the three meds I was on years ago that WORKED and cost me a little over $100 for everything, to now throwing hundreds of dollars down the drain on crap! Finally two weeks ago I had my appt. I pretty much begged him to put me back on the 30’s Told him how bad I am in pain, that physically, emotionally and mentally I am exhausted!! I said if you cant do the four times a day ill try three. Thats when he MADE ME FEEL LIKE SOMETHING I AM NOT!! HE TOLD ME I WAS BARGAINING WITH HIM JUST TO GET THE PILKS AND THAT MY CONDITIONS DONT WARRANT PAIN MEDS!!!! I told him DO NOT MAKE ME FEEL THAT WAY WHEN YOU KNOW I AN LEGIT! Needless to say he be ame very frustrated, pounding his keyboard. I cant help that my pain is managed with the 30mg’s. I cant help that soma is the only muscle relaxer that worked. Ive been crying all weekend as taking it three times a day is not working. There are way to many hours in between doses and my pain is back to over a ten. He also told me DO NOT ASK TO HAVE IT BACK TO FOUR TIMES A DAY, MY HANDS ARE TIED. I know dam well hes lying to me when he said all his patients were cut back. My friend sees him and NONE of her meds were cut!! She has MS. I did not ask to have two failed spi al fusions that left me with excruciating nerve pain from lower back down my legs into my feet, I did not ask for the three herniated discs
    i have or the fibromyalgia, or the stenosis, deg. disc disease, migraines and the arthritis in my hips and spine. I AM NOT RESPONSIBLE FOR SOMEONE WHO CHOSE TO ABUSE PILLS, ABUSE THEM WITH ALCOHOL OR OTHER STREET DRUGS.SO WTF AM I PAYING THE VERY HIGH PRICE WITH MY LIFE HERE!?!? I am soooo sick and tired of being treated like some dam criminal, addict and pill seeker. It is really causing me to have some pretty bad anxiety attacks. I know I need to find another dr, but I cannot put myself thru the discrimination, judgement, abuse, neglect, mistreatment a chronic intractable pain person goes thru. Im seeing a surgeon on Thursday, something I promised myself I would never do, after my last fusion left me worse than before being cut open. I dont know what to do anymore. I was so much better when I was on the correct doses, now my health is taking a turn for the worse, my kids watch me cry in agony every day. I no longer am able to go to family functions, My adult daughter does not understand why I am being FORCED TO SUFFER IN PAIN WHEN THERES A MEDICINE THAT WORKS. WHAT OUR GOVERNMENT IS DOING IS INHUMANE,! They are forcing legit patients to turn to the streets for relief or worse KILLING THEMSELVES BECAUSE THEY WERE STRIPPED OF THEIR LIFE SAVING MEDS. I AM SO DAM MAD. MY QUALITY OF LIFE WAS TAKEN FROM ME WHEN MY DR STRIPPED ME OF THE CORRECT DOSE OF OXYCODONE ABD HE HAS NOW JOINED THE ANTI OPIOD CLICK, IGNORING THE PAIN I AM SUFFERING IN. I am in the process of obtaining legal representation. How us this even legal?? I plan on going after the CDC, our government, the DEA, and if need be my dr for malpractice, for INTENTIONALLY FORCING ME TO ENDURE PAIN AND SUFFERING, NOT ONKY ME BUT MY KIDS AS WELL. NOONE SHOUKD HAVE TO LIVE IN EXCRUCIATING PAIN WHEN THERE IS MEDS THAT WORK, AND NOW THERES ON,Y A SELECT FEW WHO ARE ALLOWED TO HAVE IT!?!? What a crock of BS!!!! Pain affects each individual differently, meds affect every person differently, I dont know how much more I can honestly take! I know if I tell my dr im in to much pain with three a day. he will probably discharge me, anything to get rid of me and then Ill realky be screwed. There is NO HELP OUT THERE! Pain drs are turning their backs on those who are legit patients. If you know of a pain dr here in NJ you can refer me to, please let me know. Ill be calling me senators AGAIN tomorrow, Thank you for standing up for the legit patients

  7. Michael H at 12:37 pm

    How true. We need someone like you representing us with the CDC and the other organizations that wish to torture us, steer us to the streets to self medicate or just end it all. I have had a blessed life because of the medicine if they take it away
    I will be back at sq.1. Bed ridden and in terrible pain 24 hrs a day.

  8. Deb at 10:41 am

    Too bad this can’t be published in a national newspaper or have this doctor interviewed on national TV where he can deliver this same message. We suffer so much and most of it needlessly. If only I could find a way to manage my pain myself. I was on narcotics for about 15 years. I lost my insurance and of course my pain doc wouldn’t see me without payment. I’ve been searching for a new pain doc ever since. I didn’t even withdrawl but my body became overwhelmed with the pain again. I did take myself off of the meds as slowly as I could with the meds I had left. My body did become tolerant and I kept needing higher doses. If only the pain doctors would have listened to me and just changed up my meds instead of increasing them I wouldn’t have been on such high doses. I’m not an addict in fact far from it. When my pain was being managed properly I would forget to take my pain meds because I was busy living life. That is not something an addict would ever ever do. People are going to abuse some kind of drug no matter what society does. Kentucky stopped almost all pain treatment and last year they had a special meeting of the government to figure out what to do about the herion problem. I could manage my own pain meds and live a much more productive life. If I knew where I could get pure herion that’s what I would use. But that would make me a criminal instead of a pain patient. I wonder how long this mess is going to take to straighten out? Will I have a heart attack from the pain before it happens? Will I just give up and decide I can’t go on? What horrible questions I have because I’m the square peg that doesn’t fit in the round hole.

  9. LouisVA at 10:41 am

    I am one of those fortunate people that have done well on opioid therapy. I have been on the same dose for over five years, not needing an increase in dosage as many said would happen. My quality of life between ages 60 to 65 has been much improved. I wish I had not waited until age 60 to try this treatment.

    I am one of those UNFORTUNATE people that has done well on opioid therapy and now I am scared sh**less that I will not be able to continue with my treatment due to the efforts by many to take away the only thing that helps me have that much improved quality of life.

  10. Kristine at 9:42 am

    Dr. Nagel: Regarding my comment above, I cannot find your book. Can you provide a link please?

    Kristine

  11. Kristine at 9:31 am

    Thank you Dr. Nagel for your honest and seriously-needed words. I will be ordering a copy of your book presently. I am a pain/opioid patient, and as a retired writer and researcher of 30 years, I currently am researching the problems you mention above in order to try my best to do something about getting the very “word” out that you’ve described. I am interested right now more about the problems you face as a physician. Of course, II have run into all the problems we face as patients: doctors, pharmacies, publicity, and all that leads ultimately to depression and isolation and more pain. I could write a book here, but I just wanted to say thanks. If you have any other articles you’ve written or suggestions for my research I would be so grateful if you would contact me. 30yearfreelance@gmail.com

    Regards,
    Kristine