On May 23, 2015, my motorcycle was struck by a careless driver in a large van. My left foot was crushed, the great toe and first metatarsal shattered, while pieces of the first, second and third metatarsals exploded out through the top and bottom of my foot.
My first hospital stay lasted eight days. There, the orthopedic trauma surgeon saved my foot from the immediate threat of amputation and sent me home with a vacuum-assisted closure device for the wound while the plastic surgeons figured out how to close the large hole on the bottom of my foot.
After a week, I was admitted to a second hospital for a skin graft, but the surgery was aborted because of the size of the wound. Finally, I was admitted to the limb-salvage center at yet another hospital, where a team of surgeons transplanted skin, fat, muscle, vein and nerve from my thigh to my foot. By the time I went home 10 days later, I had been in and out of hospitals for more than four weeks, heavily medicated for pain — with varying degrees of success — with both immediate-release and extended-release oxycodone as well as intravenous morphine, fentanyl and Dilaudid (hydromorphone).
Having been opiate-naive before the accident, I found this to be a confusing, dreamy and sometimes scary time. Even when I was home between surgeries, I wasn’t really present for my family — either for my year-old daughter or for my wife, who was somehow holding our family and home together in the aftermath of the accident.
To keep my pain under control, my doctors regularly needed to up the doses of the drugs as I become tolerant — which they were always happy to do. I know that some of what happened next was my fault: I’m well educated, and I should have been thinking more long-term. But if I’m perfectly honest, I was just scared. The memory of those early days in the hospital was constantly present, and my life revolved around keeping my pain manageable; whenever I began to feel as if I was losing control, I upped the dosage and informed my doctors, who wrote a new prescription. It never even occurred to me that I should be aggressively looking for the first possible moment to begin decreasing my medication, and no one told me to do so.
It was nearly August before my original orthopedic surgeon, at an X-ray follow-up, asked about my pain and noted that I ought to think about getting off the meds. He seemed surprised that I was still taking such high doses, and his recommendation to back off had an air of admonishment about it. He did not, however, have any suggestions, nor did he mention that I might have difficulty quitting. He simply told me to call the plastic surgeon to get advice on weaning.
The plastic surgeon advised what I now know to be a very aggressive taper, which involved dropping one-quarter of my daily dose of extended-release oxycodone and gabapentin, a neuropathic pain medication, each week for the following month and using the immediate-release oxycodone only when I absolutely needed it. My wife, a research scientist, was skeptical of the approach, but we assumed that my physician knew best.
That night, I reduced my first dose.
Soon I became nauseated, lost my appetite and began to have difficulty sleeping. I spent most of my days that first week lying on the couch, waiting for time to pass. When the symptoms began to improve around Day 6, however, I assumed that my body was becoming accustomed to this process.
But then it was time to drop the next dose. During that second week, I ate even less and began spontaneously crying. The crying was disconcerting by itself, but after a few days it would launch me into depressive episodes. Each day felt a little worse, and I began to believe that I would never recover. My body, my brain, my hormones — they all felt so profoundly broken.
We called my doctor, who focused on the intestinal problems, advising stool softeners and lots of fluids. When I meekly pushed him about my overall discomfort, he told me that if it was that bad, I could just go back on the meds for a while. But I felt too invested in the plan, nearly two weeks into this misery, and I committed to sticking it out.
At the beginning of the third week, things started to go off the rails. The discomfort that had been keeping me awake at night turned into what I would come to call the “withdrawal feeling.”
It felt like being on fire inside, with muscles that restlessly twitched. I stopped trying to sleep in my bed. Instead, I never left the couch, napping for 90 minutes at a time. I alternated between sweating and being covered with goose bumps, and I had several crying spells a day. The depression was crushing.
My wife called the doctor again. He told her it might be time to go back on the meds now. When she asked if there was anything the doctor could prescribe to ease my symptoms, he said that he wouldn’t advise me on the matter any longer, as he was clearly out of his depth — I needed to find someone comfortable dealing with opioid dependence.
But the thought that the nearly three weeks of suffering I’d endured might have been for nothing and that I might have to go through it again in the foreseeable future was unbearable. I decided to stick to the plan.
After I took my final dose of opioids at the start of Week 4, I thought withdrawal might kill me. The nausea left me curled up on the floor of the bathroom in the middle of the night because I couldn’t get to the toilet quickly enough on my walker. I went three days without real sleep and — for the first time in my life — had suicidal thoughts.
My wife began calling every doctor who had treated me, and none would help. Several said only that I should go back on the meds (with no advice for after that); others told me to find pain specialists; and one told me to go to the emergency department, where doctors would probably put me back on medication until I stabilized.
The pain management team that had treated me in the hospital refused to see me, saying that they were an inpatient team that could prescribe narcotics but did not treat withdrawal. We called every doctor in the area, with similar results. I found an independent pain management clinic, which said the same thing the hospital team had: They could prescribe medication but couldn’t treat my withdrawal symptoms. They advised my wife to take me to a methadone clinic.
We finally found a clinic willing to help to manage my withdrawal, but the next available appointment was five days away.
“It’s an emergency,” I told the woman on the phone.
She told me I should go to the emergency department then; all she could do was put me down for the end of the week. I thought to myself — and I think I believed it — that I would be dead by then, and I hung up.
Day 3 without sleep: I had not left the couch. By this time, my wife was scared. She asked me to refill the lowest-dose prescription I had. It had been nearly four weeks of absolute misery, and I had been without any prescription pain medication for six days. I desperately wanted to make it out the other side, but I had started to doubt that there was one.
I refilled the prescription.
That night, I went to bed instead of staying on the couch and put the meds on my nightstand. I told myself that if I was still awake in four hours, I would take a dose. An hour later, I was asleep, and I didn’t wake up until morning.
I had come out the other side.
No one will be surprised to hear that I was angry. Angry at myself, angry at my doctors, angry at the medical community. I had been hit by a van and undergone surgeries, yet the worst part of the experience was my month in withdrawal hell. How could it be that my doctor’s best tapering advice led to that experience? And how could it be that not one of more than 10 other doctors could help?
I have since learned about some strategies that help patients get free from narcotics. For instance, I now know about appropriate weaning schedules, such as tapering off each medication separately, and at a rate of as little as 10 percent per week. I’ve learned about Suboxone (buprenorphine and naloxone) as an alternative to methadone and about a variety of medications for managing the symptoms of withdrawal, such as trazodone for insomnia and clonidine for restlessness.
So why aren’t these strategies common knowledge among physicians?
Doctors are the gatekeepers of medication for a reason: They are supposed to protect their patients from the harm that could come from unregulated use of those medications. Physicians, public health officials and even the Centers for Disease Control and Prevention tell us that we are in the midst of an opioid epidemic because of the incredible addictive power of these drugs. Yet when people become addicted to painkillers after suffering a trauma, the best advice they might get from physicians when coping with withdrawal is to go back on the drugs. Can we really do no better than that?
As an ethicist by profession, I believe physicians have a duty to prescribe only those medications that they can responsibly manage for the length of a patient’s need, including the treatment of foreseeable side effects. If a doctor prescribes a highly addictive medication for pain management, with serious and predictable withdrawal effects, then the physician has a duty to see that patient through the weaning process as safely and comfortably as possible — or to refer the patient to someone who will be able to offer assistance through that process.
To responsibly prescribe opioids, physicians must have the relevant information concerning dosing, dependence, weaning schedules and symptom management. There is mounting evidence, however, that medical schools are not making this a priority. in “A Nation in Pain,” Judy Foreman surveys the literature on medical education, only to find that there is little to no formal training in pain and pain medicine in U.S. medical schools. For context, she notes that Canadian-trained veterinarians receive, on average, far more education on pain than do U.S. medical students.
Of course, pain specialists do receive such training. Yet the two pain management teams from whom I sought help delineated their jobs as prescribing pain medication, not helping patients withdraw.
Methadone clinics, meanwhile, deal largely with maintenance and detox programs for people with long-term addiction, not necessarily someone in my situation. In my case, the nonspecialists, the pain specialists and the addiction specialists all failed to see routine withdrawal care as falling within their purview. That needs to change.
The plastic surgeon who had been managing my prescriptions eventually apologized and admitted that he simply had not known how to deal with opioid dependence. I hope that he committed to learning more after this experience.
But we need a broader conversation about physician responsibility for opioid-related harms as well as the systemic forces that make it easier or harder for physicians to recognize and discharge their responsibilities.
Opioid withdrawal isn’t minor. It’s not “just temporary” or “the price to be paid” for pain relief. It’s not morally innocuous. The moments that I was in withdrawal — all of the thousands of moments of genuine suffering — were the worst of my life. That kind of suffering matters, and its seriousness needs to be reflected in the way we deal with prescription opioids.
Having experienced the kind of pain that I did from the initial trauma, I’m certainly not anti-opioid — I’m immensely grateful that I live in a time and place where my pain was able to be medically managed. But I also view the drugs with much greater disconcert than I did before, and I am constantly shocked by how flippantly some Americans — both patients and doctors — seem to view them.
Rieder (firstname.lastname@example.org) is the assistant director for education initiatives and a research scholar at the Johns Hopkins Berman Institute of Bioethics. This article was excerpted from the January issue of Health Affairs and can be read in its entirety at healthaffairs.org.