O Tempora! O Mores! – A Draconian Practice in American Pain Management

O Tempora! O Mores! – A Draconian Practice in American Pain Management

For years I’ve been an online peer counselor to people in pain and because of my visibility I receive personal pleas for help each week. Last week I received an email from a chronic pain sufferer, a woman who’d just been “fired” by her PCP who had been treating her chronic pain syndrome.

This woman, let’s call her Rose, communicated her shock and disbelief. “I did nothing wrong,” she pleaded. “My doctor has taken care of me for years, he knows me and then he turned on me. I can’t function without my medication. What am I going to do?”

Rose’s feeling of hopelessness, her anxiety about the anticipated misery of impending opiate withdrawal, and the abandonment and outrage she felt for having her world turned upside-down is an experience all too common in people living with chronic pain today.

Rose related a story of five years on chronic opioid therapy (COT). Her current regimen consisted solely of extended release oxycodone. Recently, she complained to her doctor of pain no longer covered by her OxyContin. She was referred to a surgeon, who explained prudently that Rose did not need surgery, but would benefit from the addition of an opioid analgesic to treat her breakthrough pain. The surgeon prescribed Tylenol with codeine and instructed Rose to refill this medication with her PCP when needed.

At her next PCP visit, Rose reported the results of the surgical consult to a PA, and a note was made in her chart about the addition of Tylenol #4 for breakthrough pain.

Codeine reduced her pain and Rose’s was again under control until a few months later, when she was administered a random UDT.

Her test result came back positive for hydrocodone.

Both her PA and PCP spoke with Rose about the inappropriateness of using unprescribed medication, and reminded her of the terms of her “treatment agreement.” Yes, Rose knew and followed the rules. She categorically denied taking any medication other than those prescribed by her PCP. “Your husband is prescribed Norco. Perhaps you took some of his pills,” they suggested. Again Rose asserted that she wouldn’t do that, and never with hydrocodone, which causes in her a severe allergic reaction. Frustrated and angry, Rose wrote, “I told him about my bad reaction to hydrocodone when we first talked about using pain drugs. I told him to look in my chart. He knew I couldn’t take hydrocodone!”

Instead of consulting her chart, her doctor said: “if it’s in the urine, then you took the drug,” and walked out.

Rose never saw her PCP again. After a long wait in the exam room, an MA returned to inform Rose that she was dismissed from the practice. She was given a referral to a pain management clinic along with the copy of a letter that would be included in her chart. This letter stated that Rose had mismanaged her pain medication and was a high-risk for abuse.

Rose confided that she left the office in tears. “I don’t remember driving home that afternoon,” she confided. “I was in a daze for almost a week until I woke up and realized that I had to do something about my pain management. Can you help me?”

She desperately wanted to know: “How do I get my good name back?”

Unfortunately, Rose’s story is not unusual. I read posts or receive emails every week containing stories similar to Rose’s. A majority of these writers are women, and most who write me directly are elderly people who have trusted their doctors for years. Some are devastated by the withdrawal of their health care, and many feel outraged by the assault on their personal integrity.

kwgm at Lake 12

Kurt W. G. Matthies

I’m no expert, but I’ve learned a few things about UDT and opioid metabolism, thanks to my friend Dr. Jeffrey Fudin, B.S., Pharm.D., FCCP, FASHP Diplomate, American Academy of Pain Management. Jeff is an expert in opioid metabolism, and is the publisher of UrinTel, an app for help with the interpretation of unexpected UDT results in COT care, available from Remitigate.com. Jeff taught me that most commonly used opiates have active metabolites that are in themselves, effective analgesics.

For instance, hydrocodone metabolism, which occurs through specific enzymes produced in the liver, produces about 15% of hydromorphone, the powerful opioid found in Dilaudid. It is believed that the metabolically produced hydromorphone adds to the analgesic effectiveness of hydrocodone.

Codeine has its own unique set of metabolites. Dr. Howard Smith, MD, writes in his monograph Opioid Metabolism *, “Codeine is also metabolized by an unknown mechanism to produce hydrocodone in quantities reaching up to 11% of the codeine concentration found in urinalysis.

* Smith, Howard, MD, Opioid Metabolism, Mayo Clinic Proceedings 2009, Jul; 84(7): p617.
Available in PDF form: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704133/

Rose’s problems occurred, through no fault of her own, because her PCP was unaware of codeine metabolites, specifically, hydrocodone. Had he better understood the results of a medical test he administers regularly, Rose would have been spared the unfair abandonment, abuse, and loss of a health care provider who held her respect and trust. Now, she’s been labeled at high risk to abuse the pain medications that she’s managed without incident for over 5 years, because of this doctor’s ignorance.

Is it ethical for a physician to administer (and charge for) a diagnostic test for which he or she does not understand the results? Is it ethical to dismiss a patient from a practice based on misinterpreted test results?

I read personal stories of loss that turn on the misinterpretation of UDT all the time. Too many people are being cut off from their COT because their doctor does not understand the results of a diagnostic test that is given to millions of pain patients each month all over the country.

Another pain patient wrote last week that they’ve been prescribed the fentanyl patch for a few months now, and their doctor does not understand why fentanyl isn’t appearing in her UDT. This patient is now living with the anxiety of imminent dismissal. Her doctor has given her “one more chance.” If the urine does not show fentanyl next month, she’s out.

When I consulted with Jeff Fudin about this situation, he quickly informed me that fentanyl is not expected to appear in a standard UDT.

Oh, by the way, UDT is a big money maker for the few labs that provide this service nationwide for the millions of patients required to undergo UDT if their treatment includes COT.

Misunderstood UDT is not the only risk that threatens a pain patient’s treatment options. The patient on COT in a pain flare, who runs short of medicine before the end of the month, or fails a mid-month pill count is labeled as “non-compliant.” Some people decide that “I’m not going to take that tramadol anymore because I hate the way they make me feel, and they don’t work anyway.” All are labeled non-compliant which puts them at great risk of losing access to pain relieving medications.

Too many prescribers have a “one strike and you’re out” policy when it comes to opioid therapy. I suppose there are primary care physicians who dismiss a patient for not taking their antihypertensive, or for mismanaging their statin dose, but I doubt this happens with any regularity.

O tempora! O mores!  This situation is deplorable. It’s hurting people every month. We don’t know how many. These people don’t need any additional pain, and no dismissal exemplified by Rose’s experience has stopped one instance of opioid diversion or abuse.

There’s another important medical issue at stake here that demands examination. When a PCP dismisses a patient from practice, who assumes responsibility for that patient’s overall health? I wonder how American medical malpractice attorneys would weigh in on this situation.

Many people in the pain community wonder how and why we’ve come to this shameful state of patient abandonment in American medicine. We treat a huge segment of our population with a debilitating chronic disease with contempt, skepticism, and shame. In no other field of medicine do so many lose their primary treatment, not because of inefficacy or Obamacare, but because of a single act of so-called non-compliance with treatment, which is too often a situation of practitioner ignorance rather than a pain patient’s aberrant drug-related behavior.

Most patients believe that federal agencies are at the bottom of why so many doctors turn their backs on people in pain. The boogey-man in this scenario is believed to be the US Drug Enforcement Agency or DEA.

While the DEA plays a large role in the investigation and prosecution of physicians, it also controls quotas on the amount of opioid product available produced each year in America. Under DEA supervision, our nation consumes the bulk of the world supply of opioid analgesics. According to many sources, the US consumes 80% of the world’s opioid production. In 2011, Americans used 749mg morphine equivalent per person.

http://www.painpolicy.wisc.edu/countryprofiles contains more information on the global opioid consumption statistics for those interested in these numbers.

While demonizing the DEA may provide emotional satisfaction for many, it is not constructive in resolving the problems faced by the millions who live in pain, and may be inaccurate in individual cases.

The anxiety over this issue in our community of chronic pain patients is palpable. Losing one’s access to pain medication is unthinkable for the many of us who have an opioid dependence lasting many years. People in pain rely on their medication to get through a day taking care of children, going to work, serving their community, or simply getting off the couch – in other words, pursuing a better quality of life.

People on COT are not lotus eaters – our medications return function to our lives that most take for granted.

There is no simple answer as to why people are losing their pain care, because the factors that lead to these Draconian responses are complex. And we must not forget that this system, with its faults, does provide for the treatment of many. Does the system care about those who fall through the cracks? Is anxiety good for chronic pain?

There are better questions to ask, the answers to which might hold hope for people like Rose, and that may include you and me.

In my next story for the National Pain Report, I’ll explore some of these factors and offer some suggestions for improving this deplorable situation.

@kwgmatthies

@chronicpain

@COT

@NationalPainReport

Authored by: Kurt W.G. Matthies

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addendum:

And “BL” is FOS. He/she is spouting the “party line” — that it is all about bad addicts ripping off good doctors. BS. It. Is. Not.

This is about law enforcement out of control; this is about idiot drug war propaganda; this is about human pain and suffering on a scale i bet you are too scared to see. That it is our society that is sick; that we love to hate “addicts” more than we want to love and help heal our chronic pain patient.

“Good,” judgmental, “normal” people like BL do far more societal harm than do the “addicts” they so regularly spout off against.

You are merely repeating a stupid societal meme. STFU. Read what our host, Mr. Matthies, is writing. He speaks the truth; he speaks for chronic pain patients, and consults real doctors before he speaks. So unlike impulsive you.

You speak for Fox News type idiots. You rant on “addicts” because it makes you feel ‘better than.’ Shame on you. And anyway, you are wrong on the facts and ignorant of the underlying science –> very specifically unlike our host, Mr. Matthies, who I happen to know has educated himself very well and carefully, and who writes accurately and without major scientific error.

peace, out.

..alex…
A. DeLuca, M.D., FASAM, MPH

You write well Mr. Matthies.

I think you nailed it with this lyric:

“Too many prescribers have a “one strike and you’re out” policy when it comes to opioid therapy. I suppose there are primary care physicians who dismiss a patient for not taking their antihypertensive, or for mismanaging their statin dose, but I doubt this happens with any regularity.”

You are correct. The ‘one strike’ policy is real; it is the rule, not the exception. And yes, the demographic mostly harmed are run-of-the-mill average chronic pain patients… “addicts” always find a way; no need to worry about them except long-term.

Peace, friend; you write well and do needed work. Your medical understanding is entirely accurate.

..alex…
Alex DeLuca, M.D.; FASAM; MPH
http://doctordeluca.com/

Thank you so much for giving me a feeling that I am not alone; for giving me a voice. I have been abused by medical providers, spoken to like I am a complete idiot, treated like a drug seeker, questioned about being molested as a child, and been given long list of misdiagnoses or worse yet inept doctors who could not figure out I had an ovarian tumor, TMJ, thyroiditis, urethritis….I am sure there were other times but I cannot think right now. I have fibromyalgia, several colon/abdominal surgeries that they tell me have left adhesions which cause pain, degenerative arthritis in spine and neck and that with the chronic pain makes it so difficult to think clearly, to cope with more than one thing at a time. I had been using the same pain clinic for 6-7 years and i a had a good relationship with my provider. But about two weeks before my pain clinic visit I had a molar pulled. I stopped by my pharmacists and picked up the 15 pills he gave me for pain. That resulted in some lady coming in the exam room at the pain clinic who told me I had broken my contract and was dropped as a patient. I cried for hours because I felt like I had done something horrid, I had broken my word, and I let my provider down. Why I picked up the prescription I don’t know: I did not need them. It seems lately I don’t know why I do or don’t do a lot of things. And fear is so disabling. I am afraid of having to live life without any rest from the pain. How can we make people understand we are not drug seekers : we are hope seekers. Hope for life with some rest from a life dominated with pain.

flyingcars

I’ve had very similar experiences to “Rose”, although I have never failed or had a drug test misinterpreted. I’ve felt pretty “unwanted” since my chronic pain suddenly began in 1998, when I was just 25yrs old. One minute I was a relatively normal & healthy young woman, & the next I was overwhelmed with chronic pain, insomnia & muscle spasticity. I was a Registered Nurse – employed full-time & I wasn’t a known liar or have an over the top dramatic personality, but that didn’t really seem to matter. I didn’t imagine my entire life falling apart, because no one was interested in diagnosing me &/or treating me. I’ve felt like a pariah. Some Dr’s would stop me before I could even tell them why I was there, to tell me they are refusing to accept me as a patient, so I didn’t need to keep talking. I’ve had Dr’s tap their finger on their temple, while telling me “it’s all in your head”. No one wants us chronic pain patients, but I don’t want chronic pain! I think it’s the stigma of chronic pain & the resulting prejudice are the main reasons no one wants us. The recent blitz of sensationalized anti-opioid propaganda is all the justification needed to not treat chronic pain pt’s. I’ve never OD’d or broken my pain contract criteria, ever! So, after 6 years with my pain mgmt Dr, he decided to wean me off my meds. The convoluted reason was that the Dr believed my “pain meds were making me too tired”, because I complained of being exhausted all the time from worsening neuropathy, resulting in worsening insomnia, making me exhausted all the time. That makes sense right? How is that a good reason to wean me off my meds? I tried to find other Dr’s, but they have a great system – you have to leave a message with your info & the pain Dr/clinic calls you back. I’ve left dozens of these messages & I have NEVER received a call back from anyone, ever! My primary Dr is no help – I get a different “provider” every time I go there. I know they are supposed to manage my care, but that is the last thing they do – it isn’t exactly their fault, it seems like the whole system is set up to fail, especially for chronically ill pt’s. So, ultimately, no one is my advocate. Being my own advocate gets me branded as a drug seeker, an attention seeker, an addict, or an abuser. I’m in so much pain all the time & I am still, if not more, exhausted. I have no options available to reduce my pain. I won’t use street drugs or turn to a life of thievery & crime, but that would be tough anyway, because I move at glacial speed! I’m trapped at home barely living. Everything is difficult for me. My poor husband is burnt out taking care of his 42yo wife. I feel… Read more »

Concerned

BL, opioid withdrawal CAN be life threatening if severe dehydration develops and electrolyte imbalances go untreated (I.E. the patient who gies cold turkey after being told it can’t kill him). Patients with cardiac issues are particularly are risk during opioid withdrawal. Patients with spinal cord injury at risk for autonomic dysreflexia (injuries above T-6, occasionally T-7 or T-8) are particularly at risk. Last month I lost a dear friend whose doctor retired and the one who took over gave him a 5 day taper from a 450 mg morphine regimine.

Gary Snook On behalf of Arachnoiditis Society for Awareness and Prevention A.S.A.P. Website: https://www.facebook.com/endarachnow We’ve looked at this issue from many perspectives and it is great to see another advocate working on this issue. Thank you Kurt. We are amazed at the sheer ignorance of uncaring and uninformed health care providers who have never experienced intractable, unrelenting, 24/7 pain: Pain that shatters your life, steals your career sometimes along with spouses and family, pain that definitely alters, if not destroys hopes and dreams – and tragically for some who could no longer cope with the magnitude of loss and unimaginable pain – chose to end their very lives. The uninformed public often heaps all pain patients into one giant category, for which they are not qualified to assess. Many intractable pain conditions do not respond to rehabilitation or further intervention. How can the general public, or even some uncaring physicians, possibly judge patients when there are limited tools to measure pain? We continue to be amazed by ignorance which includes medical professionals. The foundational problem is that the methods to evaluate and measure pain are lacking, and the 1 to 10 pain scale rating (and smiley face pain scale) needs to be replaced with methods that are more meaningful, another discussion in itself. The Institute of Medicine estimates that 100 million Americans are dealing with chronic pain, and we think it is time that pain is given federal and state resources as this is affecting families, communities – and the Nation. The overwhelming majority of pain patients are NOT addicts/abusers. Instead, many are legitimate chronic pain patients “dependent” on medication, which is much different than addiction. However, due to government bureaucracy intervening to weed out the small percentage of true addicts and abusers, serious harm is being done. As a result, we have a lack of reasonable approaches leaving chronic/intractable pain patients misunderstood and shunned. Practitioners who treat pain patients should focus on the ethical treatment of their patients, but unfortunately, treating pain patients without billing for procedures does not pay out too well. Both patients and honorable doctors alike are operating in a constant state of fear and panic as patients fear for their lives, and physicians fear losing their licenses or being shut down by the DEA. The distinguished Dr. Lynn Webster, Past President for the American Academy of Pain Medicine, writes in his article entitled, “DEA Inflicts Harm On Chronic Pain Patients”, “Controlling the abuse and overuse of pain killing drugs is necessary to keep patients safe, but the importance of decreasing drug abuse does not outweigh the needs of millions of people who suffer from chronic and depleting pain..” Who’s ultimately suffering? Over 100 million chronic pain patients! In the meantime, many interventional pain physicians (IPPs) have capitalized on this windfall opportunity by utilizing every means available to take advantage of the current system of chaos and fear. Many IPPs have successfully used their political influence to lobby Congress as well as bring about higher reimbursements… Read more »

BL

cheri, pointing out mistakez of othet drs doesnt go over well with many dr. Withdrawals are pleasant, but they arent life threatening. When we take these meds we take them knowing the problems they cause. It is up to each patient to find a dr that can take care of them, this is not the drs responsibility. you really need to get a copy of your medical records and read them. A new dr is under no obligation to treat a patient with the same mexz a previous dr did. Also most drs are going by tge FDA guidelines that state meds shoukd not exceed 120 mg daily of Morphine or Equivelent to morphine.

cheri

Yes, BL, in the ideal, best of all possible worlds, a competent PMP would do nicely to prescribe those addictive drugs, but in many regions of the land, PMPs are scarce, and competent PMPs are, as we say here, rare as hen’s teeth. Over 28 years, I’ve run the gamut from psychiatrist/PMP/internist to GP to anesthesiologist PMP. The last anesthesiologist PMP entered the treatment room, glanced at the chart, and fifteen seconds later had recommended a pain pump, stating the amount of Oxycontin with Oxycodone for breakthrough I was taking was what he used for CANCER PATIENTS (his emphasis), and then went on to compare my need for pain medication with his craving for pizza. My GP, who’d assumed my pain management from a retiring anesthesiologist (six years ago) had been very understanding. In the years he treated me, I don’t think he even urine-tested me once, as he believed the notes of the former PMP who said I ” was more like a man when facing up to pain”, and who’d even accused me, on occasion, of being masochistic. I didn’t ask once for an increase in medication over eight years. But then, I lost that GP; one who’d sworn he’d find someone to manage my pain before he moved on. He didn’t. The incompetent GP who took over my case, in that same practice, mistakenly wrote for a third the dosage. My repeated attempts to tell her she’d made a mistake went unheeded, as did the CVS printout for six years that clearly illustrated the correct dosage. I can’t tell you what the withdrawals were like–in addition to the resurgence of pain, which had to this point been under control ( after 20 long years of searching and intractable pain, I’d found relief for eight years.) It took my rather significant husband–my 6’4” well built and intimidating husband–to bring her attention to the fact that she’d put me and my family through hell (they’d watched in horror as I went through the withdrawals.) Four months later, she vanished; no call, not even the practice she was part of called. I was seen by a PA who told me this was “a one time thing” as he wrote the script. I was frantic. I was initially informed the remaining doc in the practice would not take over my case. Then, the practice called to say the doctor would in fact take my case. So, I wrote up a concise narration of my treatment by the previous vanishing physician. Then I got a call saying “sorry no dice”. I went in anyhow, saw the doctor, he prescribed and said he’d arrange for a new PMP. That practice never called. And for some mysterious reason, that GP blamed me for not having found someone to take over, to write for the medicine I needed. So he, the latest incarnation of this comedy of errors, informed me on my last visit, that he would write no more scripts for me. Period. I’ve… Read more »

Well said Kurt. You have just told the tale of many of the patients who came to see me. Over 100 in one small town in Montana.

BL

Under federal law, if a dr wont make changes in a patients medical records the patient can write a letter and have it put in their medical record.

The patient is responsible for finding a dr that will treat them. The meds used for other conditions aren’t addicting and don’t cause abuse like those used to treat pain. It is best to see a pain management dr that is familiar with drug screens. A pcp doesn’t deal with enough chronic pain patients to know as much as a pain management dr that deals witb only that.

Terri Lewis

And meanwhile, Rose needs an alternative to care. Importantly her record will reflect that she violated her pain contract and was positive for a contraband substance.

Rose has been denied due process, and will be denied the opportunity to receive care by future providers who will receive her record.

This whole situation is absolutely untenable and inhumane. To require treatment for which there is no evidence of appropriate process or effectiveness is a human rights violation.

I hope that Kurt will encourage the folks he works with to complete this survey link so we can begin to document this experience and address a plan to cure it.
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https://www.surveymonkey.com/r/L3XKQFW