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.
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: https://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.
https://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.