When D.S. Nelson was forced to taper from her pain medication in 2017, she nearly died. Nelson has a complicated range of health diagnoses, including systemic arthritis, hemiplegic migraines and autonomic neuropathy, conditions that cause severe pain but also have serious neurological implications. Rapid, irresponsible tapering not only exacerbated her existing conditions, but created a cascade of new health problems that she has yet to recover from five years later.
A former health and safety professional from Austin, Texas, Nelson first began showing symptoms in childhood. She began taking prescription opioids in her late 20s. At that time, she was told that she would need to be on these drugs the rest of her life. As she relates, rapidly taking her off opioid medication led to terrible—but entirely predictable—consequences:
The disruption in my pain treatment resulted in a severe flareup of my illnesses which ended with organ failure, emergency surgery, and sepsis. By the time I was out of the hospital, I was being given my final taper and quickly developed infections within 12 hours of my final dose, with dehydration and severe withdrawal symptoms. I had been rapidly tapered off of Oxycontin and Hydromorphone, two of the most potent opioids made. My body simply couldn’t handle such a drastic shock.
Forced tapering, sometimes called “nonconsensual tapering,” is a reduction in daily opioid dosage with the idea of weaning patients off the drugs entirely. As Nita Ghei argues in a companion piece in Discourse, this practice is driven by a false narrative that the recent epidemic of opioid-related deaths is caused by overprescription of opioids and that tapering will improve patient safety and quality of life. However, more and more, the practice is having the opposite effect.
Especially when a chronic pain patient does not suffer from addiction, forced tapering can result in serious withdrawal reactions, an escalation in symptoms and, in some cases, death. The American Medical Association’s Journal of Ethics points out that nonconsensual dose reductions for stable opioid therapy patients puts them at risk and is a misdirected attempt to ameliorate a social problem—the rise in deaths from opioid overdoses—that isn’t caused by legitimate medical therapies but rather the proliferation of illegal street drugs like heroin. Meanwhile, the Food and Drug Administration has noted the significant harm done to patients who are suddenly or rapidly forced to discontinue opioid medication.
Chronic Pain Patients Treated Like Criminals
Lelena Peacock, a small-business owner from Winston Salem, North Carolina, had to discontinue her opioid medication because of the prohibitive cost. “For a while, I resorted to concierge care, but it became too expensive for me.” (Concierge doctors are often the only doctors willing to prescribe these medications today, but many don’t take insurance because of liability issues and require patients to self-pay.) Diagnosed with fibromyalgia 30 years ago, Peacock also has scoliosis in her neck and a collagen disorder. “I’m a person with lived experience,” says Peacock. “I’ve had intractable pain basically my whole life, and I can no longer afford pain care.”
A “blame the patient” approach is frequently shown toward those with chronic pain, with doctors often suggesting that these are merely psychosomatic symptoms or that patients simply need to buck up and find alternatives. A common assumption is that patients on opioids have addictive personalities with an aversion to other pain-relief options. Every patient interviewed for this article has been proactively pursuing other means of managing their pain, everything from photobiomodulation (light therapy) and intravenous vitamins to splints, meditation and experimental over-the-counter botanicals. One patient has started taking kratom, a southeast Asian herbal extract that is legal in several states. The hard reality for these patients is that, while better than nothing, these alternatives don’t come close to effectively mitigating the pain they experience on a daily basis.
And these days, taking opioids for pain management can make patients feel like criminals. “It’s kind of like signing up for voluntary parole that you will have to pay for dearly,” Peacock says. “You are drug tested. Sometimes you have pill counts. You’re not allowed to travel if they suddenly call you for a pill count. If you’re out with your family on vacation, that’s too bad.”
The Addiction Paradigm Doesn’t Fit
Janice Garland, a former nurse from Lake City, Florida, has been on disability for 12 years. Diagnosed with Ehlers-Danlos, an inherited connective tissue disease, Garland’s condition worsened after she took a bad spill at work. Now, among other issues, she struggles with herniated disks in her neck and occipital neuralgia, both very painful.
Her efforts to retain her pain medication therapy echo an all-too-common story today: doctors who abandon patients after prescribing these drugs for years or who won’t treat them at all because their cases are too “complicated”; nurse practitioners who ghost patients or who inform them in emails that they will be tapered without recourse or assistance; and an extraordinary insensitivity to the inevitable withdrawal symptoms and myriad health ramifications that can result. Over 40% of primary care clinics do not accept long-term opioid therapy patients as new patients today.
Garland had been on a fentanyl patch, which had been keeping her stable for years. In 2017, she was force tapered off 75 mcg of fentanyl in five days. When she expressed concerns about withdrawal repercussions, the doctor who tapered her suggested she go to rehab. Realizing she was going to run out of meds, she then went to a pain doctor who recommended she be put on a pain pump, which she couldn’t tolerate because of Ehlers-Danlos and a sensitivity to sutures. When she told him this, he handed her a copy of the Centers for Disease Control and Prevention (CDC) guidelines and escorted her out the door. Facing the unbearable prospect of going cold turkey, Garland made endless calls to obtain a prescription, even contacting an addiction clinic. After explaining her situation, she was told, “You’re not a person with addiction. You’re a person with pain. We will lose our funding if we give you anything.”
Nelson stresses the importance of distinguishing between physical dependency and addiction. “I’m physically dependent on heart/blood pressure medications for autonomic neuropathy, but no physician would ever force taper me off those medications based on the existence of a guideline, because it would be a liability, not to mention unethical.”
Unfortunately, while these ethical concerns are just as relevant for patients on long-term opioid therapy, they are not regarded in the same way because of the stigma associated with these drugs, something that appears to have been intentionally amplified in the years following the publication of the CDC guidelines in 2016, which recommend nonopioid therapy for all conditions outside of active cancer, palliative and end-of-life care, and advise doctors to give the lowest possible dosage when prescribing opioids because of the risk of “opioid use disorder” (addiction). “My doctor knows I’m not an addict,” stresses Nelson. “I’ve never abused medications in my life. He took one look at me, and knew I was very sick. Fortunately, I am being treated for ‘physical dependency’ now. But I must have that designation in my file in order to be treated.”
For some, current opioid policy reflects deeper fissures in an entire system of care. Says Peacock: “We are not very good at chronic conditions in this country. We’re good at emergency care, cosmetic procedures, and high-end surgeries like knee replacement. But any kind of medical care that is ‘out of the box’—like chronic pain—does not fit into the corporate paradigm.”
There is often little concern for the impact of forced tapering on someone who has been taking chronic pain medication for years, sometimes decades. Garland recounts the horror of that experience: “I was rapid tapered. I went from 75 to 50 MMEs (morphine milligram equivalents) and within 18 hours I had [acute] diarrhea and my blood pressure was 200 over 120. I was so out of my mind, I hit my head and took a bad fall, resulting in a concussion and a broken tailbone.”
Nelson was shocked when she was told she needed to taper: “I have all of these diagnoses, and they are objectively verifiable. So, I assumed they wouldn’t taper me. But sure enough, they did. It was a rapid taper, and within a few days of my initial taper I developed extremely high blood pressure that could have resulted in a stroke. This one hasty decision resulted in the destabilization of several of my health conditions. This should not have been allowed to happen.”
But it did happen. Some link the problem to policy changes such as the Affordable Care Act which, they believe, changed the treatment model from care to prevention. Says Peacock: “Every doctor now has to be a parole officer or a cop. These are opposing principles. You cannot deny patients care and abide by the Hippocratic oath at the same time.”
Living a Normal Life … and a Life Worth Living
When Peacock went off opioids in April 2022, her function level decreased dramatically because any kind of movement aggravates her issues. “If I get up and load the dishwasher or do a couple of light chores, I have to lie down and rest in between. … It really reduces my quality of life, especially in relationship to my functionality. It’s like someone has put up a big stop sign and said, ‘you can go no further.’”
And, of course, chronic pain patients, like the rest of us, have many responsibilities. Garland looked after an elderly mother and has a daughter in her 20s who is disabled. “The medicine allowed me to take care of my mother who had dementia. It helped me to straighten out her affairs and get her into hospice care. My daughter lives with me. I do her IV fluids twice a week at home.”
Opioids also allow her to do things most of us take for granted. “With pain medication I’m able to garden. I can prepare a meal, take care of my dogs. I have a grand baby now I can play with. Without the medication, I would be inert, unable to do anything. It lets me have a normal life.”
There has been little research done on the potential risks of tapering among those who are prescribed stable, long-term, higher-dose opioids. However, more studies are emerging that show an adverse association between rapid opioid dose reduction and patient safety. While these studies show that opioid dose reduction can benefit some, the harm to others can be devastating, including an escalation in pain, an increase in illicit drug use, emotional distress, overdose and death. In one study comparing the period before a patient’s dose reduction with the period after tapering, it was reported that the incidence of hospital or emergency department encounters rose by 57%, and 52% for a mental health crisis (depression, anxiety or suicide attempt). Patients often report feelings of helplessness and suicidal ideation after forced tapering begins.
“I’d be dead without opioids,” Garland says. “I wouldn’t want to live as a shell of a person. Doctors are not just being more cautious now. They’re being irresponsible. We’ve reached a sad point in America when our animals are treated better than people.”
More and more evidence shows that prescription opioid use for legitimate diagnoses is not the problem. Illicit drug use is the problem, and the wrong people are being penalized. As Nelson emphasizes: “Physicians feel pressured to force taper patients and avoid initiating therapy even when medically indicated. Without credible science showing a distinction between overdoses sustained from diverted drugs versus those actually prescribed to patients, we shouldn’t be making massive policy changes that are impacting very ill people.”