INCUMI: Great Chronic Pain Doc/Patient BlogPost

Pain-is-inevitable-suffering-is-optional

Stigma: Opioids, Addiction & Chronic Pain via @NatPainReport

Editor’s Note: This is the first in a two part series on the stigma of chronic pain. This focuses on the chronic pain patient. The second installment features the stigma of being a pain physician. We invite your comments.

These are challenging days. Persons who suffer with chronic and intractable pain are facing widespread public misunderstanding of the difference between physical dependence on a drug to treat addiction and a chronic illness.

Physicians and policy wonks are just as confused. Prescriptions are reducing but deaths are increasing. Despite the fact that addiction in persons with chronic pain is consistently reported at less than 4% of the population of patients, many fear that anyone taking opioid medications is at risk for addiction, leading to behaviors associated with overdose, suicide, or other negative outcomes. Physicians who prescribe for complex patients are being stigmatized by their peers as ‘aberrant prescribers.’

The selective misapplication of scientific reporting is leading to the revision of treatment protocols using addiction guidelines. Some consumers successfully rely on protocols that use a combination of nonpharmacological methods or medical marijuana where available. It should go without saying that most consumers who depend on controlled substances for palliation are restricted by choices related to payor sources, or have failed many prior treatment protocols, settling on prescribed opioids used alone or in combination with other adjuvants.  Consumers who find themselves facing removal of successful treatment protocols without alternatives, legitimately fear that the public cure for addiction will force out individual consequences and treatment more harmful than the use of controlled substances.

The language we use frames what the public thinks about substance use and recovery. It affects how individuals think about themselves and their own ability to effect change or assert control over treatment outcomes. It is important to clearly understand the terms used to describe this problem.

Addiction is a neurobiological brain disease that has genetic, psychosocial, and environmental factors.  It is characterized by one or more of the following behaviors:

  • Poor control over drug use
  • Compulsive drug use
  • Continued use of a drug despite physical, mental and/or social harm
  • A craving for the drug

Chronic pain is pain that results from a discrete event, that lasts for more than 90 days without resolution. It ranges from mild to severe and is in many cases, associated with a progressive underlying disease process. Intractable pain is distinguished by measured changes to one or multiple organ systems that occur as the result of prolonged, undertreated chronic pain.

Physical dependence is the body’s adaptation to a particular drug. In other words, the individual’s body gets used to receiving regular doses of a certain medication provided for a specific and legitimate purpose. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms while the purpose for which the drug is prescribed is still present.  A number of other drugs not associated with opioids or addiction can also result in physical dependence (i.e., antidepressants, beta blockers, corticosteroids, etc.) and can trigger unpleasant withdrawal symptoms when stopped abruptly.

Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage, switch to another type of medication in order to maintain pain relief, or employ an adjunctive therapy.

Pseudoaddiction is a term used to describe patient behaviors that may occur when their pain is not being treated adequately. Patients who are desperate for pain relief may watch the clock until time for their next medication dose and do other things that would normally be considered “drug seeking” behaviors, such as taking medications not prescribed to them, taking illegal drugs, or using deception to obtain medications. The difference between pseudoaddiction and true addiction is that the behaviors stop when the patient’s pain is effectively treated.

Stigma refers to the negative attitudes expressed by members of the community, including healthcare professionals, that result in discrimination and devaluation of the individual solely because of their characteristics. Appropriate use of language in is important. Inappropriate use of language leads our thinking and expectations and can negatively impact the way society perceives both addiction and chronic pain.

Negative labels impose the mark of deviance that deprives people of individual qualities and identity.  Stigmatizing labels cause us to explain away illness symptoms through beliefs that have nothing to do with the facts of the person or the causes for their chronic illness or addiction.

Assigning ‘marks’ and ‘red flags,’ we employ labels to deny the real conditions of daily life for persons living with chronic pain. Professionals are trained to believe that ‘catastrophizing’ is an aberrant behavior associated with drug seeking, rather than understanding that it is a plea to be taken seriously as a person who is under treated for pain. Pain attributed to ‘somatoform disorder’ becomes the ‘mark’ of psychological illness rather than an indication that the physician has failed to pursue a diagnosis because they have misinterpreted your symptoms by exercising their own faulty beliefs. A person who drives more than 50 miles to fill a prescription may not have access to a provider who will take their insurance, may lack access to a pharmacy that will stock their medications or absent insurance, accept cash.

Stigma is harmful, distressing, and marginalizing to the individuals, groups, and populations who bear the burden of negative labels. It also results in misdiagnosis, wrong diagnosis and under treatment. It may lead the provider to select the wrong treatment protocols resulting in treatment failure or patient harm. It may result in the consumer losing any confidence in the possibility of establishing a healthy working relationship with providers.

At all levels of this discussion, we must employ safeguards to protect patients from the inappropriate use of stigmatizing language – through our guidelines, our interpersonal interactions, and our public language.  Now more than ever, we must resist the use of the ‘mark’ to dictate how we deliver competent healthcare.

Editor’s Note: Part Two will feature Dr. David Nagel.

 

Part Two: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

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.

Part One: http://nationalpainreport.com/stigma-opioids-addiction-and-chronic-pain-8827980.html

Part Two is here:  http://nationalpainreport.com/the-stigmatized-pain-doc-8827976.html

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3 thoughts on “INCUMI: Great Chronic Pain Doc/Patient BlogPost

  1. My neurologist has been my most trusted doctor and has been treating me and acting as my pain management specialist – for my fibromyalgia, migraines, lupus, Trigeminal Neuralgia, and multiple spinal and other orthopedic issues- for over 15 years. He is extremely ethical, careful, and conscientious, and graduated second in his class at Columbia Med, one of the best in the country.

    Over the time he has been treating me he has tried multiple treatment modalities to manage my very high and constant pain levels. None of them worked at all, until eventually, over 8 years ago, we titrated slowly up to a dosage of OxyContin that allowed me to regain at least some functionality. Though my overall condition has worsened in the intervening years, I have never asked for an increase in the dose, nor have I asked any other doctors for pain meds, even through a grueling year of dental procedures and a difficult shoulder surgery. I’ve been totally compliant, and constantly looking for opportunities to reduce the amount of medications I take, not increase.

    On my most recent visit with my neuro (who I see every 2-3 months) rather than his usual jovial greeting and questions about my condition, he came in very somber, with what was obviously a canned script he’d made a number of times. The long and short of it was that with pressure from “current events” (i.e. Prince) the Feds were really cracking down and he simply had to reduce the dose he was prescribing me. He cut it by one-third, which – as anyone who has been taking narcotics legally or illegally will tell you – is a substantial reduction for someone who’s been at the same level for over 8 years. I was then pee-tested and shown the door.

    The first month has, of course, been truly awful. Besides the actual physical withdrawal symptoms, I’ve had flares of everything that can flare, and my entire body chemistry clearly disrupted, including terrible mood swings and depression. My neuro did offere a few extra five milligram oxys to help manage the transition, but I rarely take them because they don’t seem to make much difference, and if my body must acclimate to the reduced dose, then taking them is counterproductive anyway. When I staggered in to his office to pick up this month’s scrip, I was informed that – no matter how sick I am – family members will no longer be able to come pick up my scrips every month when I’m too ill to do it, because I am now subject to random pee-tests EVERY TIME I pick up my scrip. Let me add that I live 30 miles from my doctor’s office, and getting to his door from the parking lot involves a substantial walk.

    I don’t blame my doctor. He’s a good man with a huge practice full of patients like myself who trust and depend on him. He’s seen other doctors in our area lose their licenses for careless prescribing, and had their desperate patients show up on his doorstep. He has the State and Federal officials watching literally every med he prescribes. But something has to give here. He is an excellent example of a doctor that was doing everything right! This crackdown is only making ethical people like him and myself both feel stigmatized, as the author of the article said – like criminals. And it will ultimately end up driving less-strong willed people than myself, desperately in pain because meds have been cut, into the streets where they truly are at risk and the mortalities will skyrocket.

    One clear answer in my opinion is to not only federally decriminalize marijuana, but to fund research using it to make non-addictive pain medication. It’s as if the answer is so easy, right in front of us, but the same Federal government that wants to take away the narcotic meds also refuses to federally decriminalize the one thing that would actually help! So people like myself, who live in backwards states that will probably never allow medicinal marijuana until long after I’m dead and gone, are screwed. If I try it anyway and get busted for it on a pee test, it probably means my doctor can never prescribe pain meds again. The current methodology puts doctors and patients alike in a lose-lose scenario- but for people like me that suffer with 24/7 intractable pain, that is patently unacceptable and inhumane in this day and age.

    Liked by 1 person

    • I feel for you. In the twenty-something or so years I’ve been a chronic pain patient, I’ve seen it all..from seeing patients accused of selling their meds in the parking lot and getting cut off (without proof) to pharmacists stealing controlled medications and being charged, to pain mills to good docs to awful docs to suspicious docs to trusting docs. I’ve seen good compliant patients had their pain meds cut off abruptly and hospitalized for severe withdrawal. I’ve read dozens of horror stories, have my own and read many many studies on studies of chronic pain patients and addiction.

      Before I forget, let me add that it isn’t just the Prince thing that is causing a crackdown on docs by the DEA. The CDC has officially made it their business to make patient medication recommendations to physicians prescribing controlled substances. They claim in their most recent review that only terminal cancer patients should require controlled substances and that even SURGERY patients do NOT require opiates. And ONLY a pain mgmt specialist should be prescribing controlled substances. Not a GP. Not a neurologist. Noone else. It’s SICK. (for lack of a better word) Here’s a link to the CDC recommendations: http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm

      Your suggestion about medical marijuana is a familiar one. I live in AZ where it is legal. To be honest, I was the 14th person in 2012 in the state to receive their mmj license. I no longer have it, I never renewed. Reason- the high cost, the trouble with dosing properly, & the problems associated with living in a rental and having to sign leases that prohibit renters from using medical marijuana. Yes, even though it’s legal. (because it isn’t legal on the federal level, just the state) You also are subjected to being on a public list, not allowed to have a firearm license and IF you are a licensed mmj user AND you have a surgery or are in the ER your doctors are NOT going to prescribe you any controlled substances. Not in AZ. It’s ridiculous.

      I presently have a fantastic pain mgmt doc whom I’ve seen for the last 12 yrs. He is an anesthesiologist who provides me both pain medication and multiple procedures for different conditions (TN, Lupus, OA, DDD, plantar fasciitis) like radiofrequency ablations, nerve blocks, epidurals, cortisone shots..and he’s a LIFESAVER, who’s truly given me quality of life. I SO appreciate his care. I am urine tested every six months or so and I am required to see him or one of his PA’s for office visits every month. For now I’m lucky. LIke you, I’ve been on the same dosage of pain meds for 12 years now and have never asked for an increase. I’ve also had multiple surgeries without an increase.

      Ya know most studies show that true chronic pain patients do NOT become addicted. We pay a hefty price for the bad apples..some of us with our lives. It’s not right.

      Liked by 1 person

      • I think what the Drs right now need to be cognizant of is that while a trustworthy compliant patient like you and me will never become a drug-seeking full-blown addict, at the same time – especially with long years of use- our bodies DO become physically dependent on the opioids just as an addict’s does, and abrupt cessation or decrease of our dose can produce the exact same physical symptoms that junkies experience- not only unpleasant and painful, but potentially dangerous. I would have had considerably less trouble, both with my doctor and the results of his actions, if he’d said “we need to cut your dose by 1/3: let’s do a taper in 3 steps over the next 3 months to wean you down.” He’s always very conscientious about tapering on and off of antidepressants and anti-seizure meds- as far as I’m concerned, this should have been no different.

        There may be other treatments modalities besides medical marijuana that could decrease my pain levels. I tried a large number of different ones back in the first few years (’99-04 roughly) but of the ones my insurance WILL cover, none have helped at all so far, except for injections of synvisc or steroids in my knees. Acupuncture would probably do me a great deal of good, but neither of the insurances I carry will cover it – and they’ll only cover therapeutic massage as part of a physical therapy plan. And to be honest, the decent PT is a 35-40 minute drive each way from me, and for the past couple of years, as much as I would love to get back to at least aqua therapy, I’ve felt so lousy the prospect has just been too daunting.
        I’ll definitely read what’s on that link from the CDC, but you probably won’t hear back from me about it, because I’m guessing about 99% of what I’m going to feel like saying in response will not be verbiage fit for public consumption. 😡 (Just as an aside, do ANY of the sage govt agencies passing down these edicts that drastically affect the lives of millions of chronically ill people EVER bother to ask us what we think, what we need? Or what it’s like to live with what we live with? Cancer is NOT the only illness that causes chronic intractable pain! Arrrrgggghh!!!)

        Like

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