On April 17, Katie Herzog checked into a Boston teaching hospital for what turned out to be a nine-hour-long back surgery.
The 68-year-old consulting firm president left the hospital with a prescription for Dilaudid, an opioid used to treat severe pain, and instructions to take two pills every four hours, as needed. Herzog took close to the full dose for about two weeks.
Then, worried about addiction, she began asking questions.
“I said, ‘How do I taper off this? I don’t want to stay on this drug forever, you know? What do I do?’ ” Herzog said, recalling phone calls and conversations with her providers. “I never got a clear answer. There was a lot of passing the buck. The visiting nurse would say, ‘Well, do whatever your doctor says.’ The internists would say, ‘whatever the surgeon said.’ The surgeon doesn’t do medicine. It was his resident or somebody else in his group who [wrote the prescription].”
When none of those people explained to Herzog how to wean herself off the Dilaudid, she turned to Google. The Centers for Disease Control and Prevention has a “pocket guide” that describes tapering opioids for chronic pain, but no equivalent for acute pain meds following surgery. Herzog eventually found a Canadian Medical Association guide to tapering opioids.
“So I started tapering from 28 [milligrams], to 24 to 16,” Herzog said, scrolling through a pocket diary with red cardinals on the cover. “I can show all the way that I went down,” she added, tracing the pill totals and dates, line by line.
Herzog flipped ahead to May 16 — the day of a scheduled follow-up visit with her surgeon. She had reached the end of her self-imposed tapering path the day before. That day, one month after her surgery, Herzog had her first Dilaudid-free day, and she was sick, quite sick.
“I was teary, I had diarrhea, I was vomiting a lot, I had muscle pains, headache, I had a low-grade fever,” Herzog said, ticking off her symptoms.
She stumbled between the bathroom and the examination room.
“The surgeon said, ‘I think you have a virus, you should go see your internist,’ ” Herzog recalled. “The PA [physician’s assistant] was there and she thought so, too.”
Herzog did as directed and saw her internist, who agreed: Herzog had a virus. So Herzog went home and suffered through five days of what she came to realize was acute withdrawal and two more weeks of fatigue, nausea and diarrhea.
“I had every single symptom in the book,” Herzog said, punching each word, “and there was no recognition by these really professional, senior, seasoned doctors at Boston’s finest hospitals that I was going through withdrawal.”
Herzog did not name any of the five to seven doctors and nurses from three different health systems who had something to do with her pain management or missed signs of withdrawal. She said she sees this as a system-wide problem. Herzog did share medical records that support her story. She has since returned to her providers, who’ve acknowledged to Herzog that she was in withdrawal.
“We have many clinicians prescribing opioids without any understanding of opioid withdrawal symptoms,” said Dr. Andrew Kolodny, director of Physicians for Responsible Opioid Prescribing and co-director of the Opioid Policy Research Collaborative at Brandeis University’s Heller School. One reason, Kolodny said, is that doctors don’t realize how quickly a patient can become dependent on drugs like Dilaudid.
Sometimes that dependence leads to full-blown addiction. The majority of street drug users say they switched to heroin after prescribed painkillers became too expensive.
Now, a handful of doctors and hospital administrators are asking, if an opioid addiction starts with a prescription after surgery or some other hospital-based care, should the hospital be penalized? As in: Is addiction a medical error along the lines of some hospital-acquired infections?
Writing for the blog and journal Health Affairs, three physician executives with the Hospital Corporation of America have argued for naming long-term opioid use that begins with a prescription as a hospital-acquired condition.
“It arises during a hospitalization, is a high-cost and high-volume condition, and could reasonably have been prevented through the application of evidence-based guidelines,” wrote Drs. Michael Schlosser, Ravi Chari and Jonathan Perlin.
The authors admit it would be hard for hospitals to monitor all patients given an opioid prescription in the weeks and months after surgery, but they say hospitals need to try.
“Addressing long-term opioid use as a hospital-acquired condition will draw a clear line between appropriate and inappropriate use, and will empower hospitals to develop evidenced-based standards of care for managing post-operative pain adequately while also helping protect the patient from future harm,” said Schlosser in an emailed response to questions.
Kolodny, who said it’s an idea worth considering.
“We’re in the midst of a severe opioid epidemic, caused by the over-prescribing of opioids,” Kolodny said. “Putting hospitals on the hook for the consequences of aggressive opioid prescribing makes sense to me.”
But penalizing hospitals for patients who become addicted to opioids would appear to conflict with several incentives that encourage opioid prescribing. The nonprofit Joint Commission, a hospital accreditation group, is revising its requirement that hospitals assess patients’ pain and help them manage it, but, for now, the current requirement remains.
Hospitals that do not adequately address patients’ pain may also lose money for low patient satisfaction scores. In response to the opioid epidemic, patient surveys are shifting from questions like, “Did the hospital staff do everything they could to help you with your pain?” to questions that emphasize talking to patients about their pain. But physicians may still prescribe more, rather than fewer, opioids to avoid retribution from dissatisfied patients.
“This is a real concern that patients who may feel that their pain is under-managed may take that out in these patient report cards,” said Dr. Gabriel Brat, a trauma surgeon at Beth Israel Deaconess Medical Center who studies, at Harvard Medical School, the use of opioids after surgery.
Most patients leave the hospital with more pain meds than they need. Studies show that between 67 and 92 percent of patients have opioid pills left over after common surgical procedures.
One reason that may contribute to over-prescribing: Patients vary a lot. Brat said about 10 percent of patients need intense pain management, while the others, not so much. But doctors can’t tell the difference.
“Many surgeons are still prescribing opioids for the subset of patients that have higher requirements, as opposed to for the majority of patients who are taking a very small percentage of the pills that they are prescribed,” Brat explained.
There are no firm guidelines for which opioids to prescribe after surgery, at what dose or for how long. The CDC released opioid prescribing guidelines for chronic pain in 2016, but it included only brief references to acute pain. Massachusetts has a seven-day limit on first-time opioid prescriptions, but Herzog still got 80 pills with her first prescription and another 80 with a refill.
Some opioid prescribing guidance for surgeons has been emerging. A study out in September reviewed surgical records for 215,140 patients. It found that the optimal opioid prescription following general surgery is between four to nine days.
Senior author Dr. Louis Nguyen, a surgeon at Brigham and Women’s Hospital, urged his colleagues to compare the prescriptions they write to this range.
“The big hurdle is to have people not just automatically do something because they’ve done it for 20 years,” Nguyen said, “but to really look at their prescribing habits closely and customize it for the patients and make changes.”
Reining in the amount of opioids prescribed is important, Herzog says, but she doesn’t think that’s enough. She said someone needs to help patients manage pain meds at home. And no patient should go through withdrawal alone because doctors, like her doctor, miss the signs.
“The fact that they did not recognize that I find terribly upsetting,” Herzog said.
Upsetting and urgent during this opioid epidemic that some leaders have said is now a national emergency.
Share your experiences, and follow along with our reporters as they cover opioid use and treatment, by joining our Facebook group, “Living The Opioid Epidemic.”