The opioid crisis changed how doctors think about pain

WILLIAMSON, West Virginia — This town on the eastern border of Kentucky has 3,150 residents, one hotel, one gas station, one fire station — and about 50 opiate overdoses each month.

On the first weekend of each month, when public benefits like disability get paid out, the local fire chief estimates the city sees about half a million dollars in drug sales. The area is poor — 29 percent of county residents live in poverty, and, amid the retreat of the coal industry, the unemployment rate was 12.2 percent when I visited last August— and those selling pills are not always who you’d expect.

“Elderly folks who depend on blood pressure medications, who can’t afford them, they’re selling their [painkillers] to get money to buy their blood pressure drug,” Williamson fire chief Joey Carey told me when I visited Williamson. “The opioids are still $5 or $10 copays. They can turn around and sell those pills for $5 or $10 each.”

Opioids are everywhere in Williamson, because chronic pain is everywhere in Williamson.

Dino Beckett opened a primary care clinic there in March 2014, on the same street with the hotel and the gas station. A native of the area with a close-cropped beard and a slight Southern drawl, Beckett sees the pain of Williamson day in and day out.

He sees older women who suffer from compression fractures up and down their spines, the result of osteoporosis. He sees men who mined coal for decades, who now experience persistent, piercing low back pain. “We have a population that works in coal mines or mine-supporting industries doing lots of manual labor, lifting equipment,” he says. “Doing that for 10 to 12 hours a day for 15 to 20 years, or more, is a bad deal.”

Liz Scheltens/Javier Zarracina/Vox

Beckett sees more pain than doctors who practice elsewhere. Nationally, 10.1 percent of Americans rate their health as “fair” or “poor.” In Mingo County, where Williamson is, that figure stands at 38.9 percent.

Williamson has some of West Virginia’s highest rates of obesity, disability, and arthritis — and that is in a state that already ranks among the worst in those categories compared with the rest of the nation. An adult in Williamson has twice the chance of dying from an injury as the average American.

This is why the opioid crisis is so hard to handle, here and in so many communities: The underlying drugs are often being prescribed for real reasons.

There is a simple story about America’s painkiller addiction crisis — where drug companies pushed too-good-to-be-true statistics that promised opioids to be safe and effective, when they were in fact addictive and deadly. This story happened: As the Charleston Gazette revealed in a Pulitzer Prize–winning series, pharmaceutical companies sent 780 million opioid pills to West Virginia — a state with fewer than 2 million residents — over six years.

But there’s more to the crisis story than corporate pill dumping. Understanding how opioids became so ubiquitous in America requires understanding a fundamental shift that happened 30 years ago in how doctors thought about pain itself.

Javier Zarracina/Vox

I.

In the 1990s, a new movement swept through professional medicine that urged providers to not just reduce pain but cure it entirely. Patient groups, academic journals, and the federal government itself made a convincing case that physicians were not doing enough to treat chronic pain. Patients in particular felt like doctors just wouldn’t take their claims of pain seriously.

In the mid-1990s, pain scales with smiley faces and scowls suddenly appeared in doctors’ offices. Medical guidelines urged doctors to get patients as close to the zero — the smiley face — as possible. Some big hospital systems, including the Veterans Health Administration, dubbed pain the “fifth vital sign,” just as important as blood pressure and temperature.

Powerful opioid painkillers, meanwhile, had just begun to roll onto the market. They promised the pain relief that doctors now believed they needed to deliver. “There was a push that we had to get pain to zero,” Beckett, who was in medical school at the time, remembers. “Hydrocodone worked well at that — too well, because patients became addicted, and kept needing more and more to control their pain.”

The ensuing opioid addiction crisis has now forced doctors to rethink some very fundamental pillars of how they practice medicine: How much can they do to treat pain? Were they right to consider it a vital sign? How much should they do? Is it more ethical to ask patients to live with pain when they know relieving pain can have horrific side effects?

Doctor groups have recently begun pushing for a new practice of medicine that deemphasizes the role of pain. Accordingly, the federal government announced in 2016 that it would not pay out financial rewards to the hospitals that have the biggest reductions in patients’ pain.

This rethinking of pain is meant to move professional medicine away from opioids, an undeniably important step for stemming the drug crisis. But it also leaves chronic pain patients in an especially hard situation without any safe, reliable treatment for their condition.

“Most of us went into medicine to alleviate suffering,” says Andrew Gurman, president of the American Medical Association. “One of the expectations our patients have is that pain can be completely eliminated. We as a medical community are coming to an understanding that this is not realistic.”

II.

For centuries, professional medicine had seen pain as an incurable side effect of the human condition. Pain was sometimes harmful but also potentially helpful. Chronic pain was not a gash or a broken bone that demanded immediate attention. It was invisible and subjective, and for centuries, eliminating it was not a top priority.

As recently as a century ago, the medical community believed pain helped patients survive surgery, according to medical historian Anna Lembke.

The profession’s view on pain changed, quickly and dramatically, with a neurosurgeon’s speech in Los Angeles in 1996.

In the mid-1990s, patient groups, government agencies, and academics had begun pushing for medicine to think about pain differently — not as an inevitable side effect of cancer, for example. The new thinking was that doctors should treat a patient’s disease, but also do more to end the pain it caused.

Some of these calls came from within the government. A 1997 report from the National Academy of Medicine detailed how those suffering from cancer or at the end of life did not receive nearly enough relief from their suffering. Restrictive laws around opioid prescribing meant that dying patients often spent their last months in intense pain. “These laws force patients who suffer pain that requires frequent medication to request and renew prescriptions repeatedly,” the report argued.

A 1995 editorial in the Journal of Clinical Oncology lamented the “numerous barriers that have prevent patients from receiving effective pain treatment.” It cited studies finding that oncologists constantly underestimate their patients’ pain, and underprescribe pain relievers as a result.

All of this was happening when James Campbell, a neurosurgeon at Johns Hopkins University, took the stage at the American Pain Society’s 1996 annual conference in Los Angeles. He was the society’s president, and he delivered the keynote address.

Campbell argued for a major change in pain management. Doctors took vital signs seriously, he said. They measured your pulse and blood pressure at each visit, and got worried if the numbers were off.

It was time, he said, to elevate pain to the “fifth vital sign,” along with temperature, pulse, breathing rate, and blood pressure.

“If pain were assessed with the same zeal as other vital signs are, it would have a much better chance of being treated properly,” Campbell told the audience. “We need to train doctors and nurses to treat pain as a vital sign.”

The group went on to trademark the slogan: “Pain: The Fifth Vital Sign.” Campbell remembers that before his speech, hastily and at the last minute, somebody made up some buttons that said, “Check the sign.” Doctors at the conference pinned them to their lapels.

The American Pain Society received funding from Purdue Pharmaceutical, the manufacturer of OxyContin, during the time Campbell served as president. As the society advocated for more pain treatment, OxyContin debuted on the American market to blockbuster sales.

Campbell argues that the funding did not factor into the speech he delivered in 1996. “My message wasn’t, ‘Write a prescription for an opioid,’” he says now. “That wasn’t a consideration. It was, ‘Be concerned about your patient and realize that pain does bad things to people. It causes decreased socialization, it causes a lack of productivity.’”

It wasn’t long, Campbell remembers, before “the idea spread like wildfire.”

III.

In November 1998, the Veterans Health Administration sent a memo to its 1,200 clinics requiring clinicians to ask patients’ about their pain level at each visit. The initiative was called “Pain as the 5th Vital Sign.” A pain score above 4 was meant to trigger “a comprehensive pain assessment and prompt intervention.”

The message spread to Daniel Young, a newly trained family practice physician working in southern New York state. He remembers that in the mid-’90s, he kept overhearing the same conversation in his clinic.

“I could hear my nurses taking the history of patients, taking the vital signs, and then asking, ‘Do you have any pain today?’” Young says. “It’s not what the patient is there for, but then it’s like, well, now that you mention it, my left toe has been hurting me. It felt like patients got more demanding that they get medication.”

Liz Scheltens/Javier Zarracina/Vox

The message made it to Beckett, who was then a medical student at the West Virginia School of Osteopathic Medicine.

Beckett grew up in rural West Virginia, and though he did his medical training in Charleston, he knew he eventually wanted to open up his own clinic in his hometown: Williamson.

“I always have had the desire to be an entrepreneur,” he says. “I was selling pencils in fifth grade to my classmates. I can do dermatology, I can do women’s health; it’s kind of like a one-stop shop.”

As Beckett worked through his training, he kept noticing this really intense focus on pain. The people training him told him to ask about pain. And the patients he saw wanted their pain entirely gone.

“Physicians felt like this was being pushed down by pharma, particularly the ones manufacturing opioids,” he says. “You felt like you weren’t adequately treating pain if you weren’t getting this favorable rating from the patient.”

Beckett finished his training and in 2003 moved home to start a family practice. He’s the one doctor’s office in downtown Williamson. Most of his patients work (or have worked) in blue-collar, labor-intensive jobs like coal mining. They often suffered from intense pain — and Beckett was charged with fixing it.

“People thought their pain should be a zero,” he says of his patients. “If you injure yourself or have a chronic injury, your pain is never going to be zero. But there was this expectation of getting there, and the goal of acquiring the smile face instead of the scowl.”

Outside of opiates, Beckett’s options were limited in how to make that happen. He could prescribe care from a specialist, like physical therapy, but the closest clinic could be a long drive for patients who live in rural areas. And if he didn’t offer to cure pain with opiates, patients had another option.

About a mile and a half down the street from his office, there used to be a place called the Mountain Care Medical Clinic. It became notorious for handing out prescriptions in exchange for cash, until the Department of Justice raided and closed the clinic in 2015. But for years, the clinic’s two doctors would often see 175 patients daily, some of whom drove hours to get there.

“If you say no, they begin to doctor-shop,” Beckett says. “They’ll go somewhere else, to someone who writes more of that medication, or try multiple physicians to try and score different types of medication.”

IV.

The reason opioids are so seductively powerful — why OxyContin offers infinitely more relief than acetaminophen — has to do with how the drugs work.

Opioids work by binding to opioid receptors that are mostly located in the brain and spinal cord. These opioid receptors typically send out pain signals. But the opioid essentially tamps down on those transmissions, making it an exceptionally powerful drug. “You can think of the opioid as the key and the receptor as a lock,” says David Juurlink, a scientist with the Sunnybrook Research Institute. “The key enters the lock and changes it.”

But over time, patients develop a tolerance to opioids and require higher and higher doses to achieve pain relief. Review articles have found that long-term opioid users do no better at regaining quality of life than those who don’t use the prescriptions. And a small number of studies have found that long-term use of opioids can actually make pain worse, a condition now known as opioid-induced hyperalgesia, although the mechanism for how this happens is still poorly understood.

This new body of research has catalyzed a surprising about-face in professional medicine. In the 1990s, doctors worried about the undertreatment of pain. In the 2010s, they are now most concerned with the overtreatment of pain — that doctors do too much to soothe it.

In November 2015, two pain doctors from the University of Washington wrote a controversial article in the New England Journal of Medicine arguing that doctors need to think less about pain levels entirely.

Jane Ballantyne and Mark Sullivan made the case that doctors didn’t need to reduce the intensity of pain in order to successfully treat it. Doctors should stop focusing on the numbers on the pain scale, they wrote.

“The intensity level of pain is not a good outcome to measure,” Ballantyne says. “If you focus just on pain intensity, the tendency is just to use opioids, because opioids are the only thing that will reduce pain so immediately.”

Sometimes, Ballantyne and Sullivan argued, doctors would reduce pain. Other times they’d help patients better live with their current level of pain. The measure of good treatment, they argued, wasn’t getting rid of pain — it was getting people back to the activities that pain prevented.

The backlash to the article was fierce. Ballantyne’s boss received dozens of letters calling for her resignation. “The dean actually received 20 or 30 letters asking him to give me the facts, that I shouldn’t be a professor at a reputable university,” Ballantyne recalls. “I didn’t expect it at all. This whole way of thinking is not about hurting people, but helping them be better treated.”

NEJM opened the article to comments — an unusual move for an academic journal — and vitriol poured in. “With heart disease we treat the heart, with lung disease we treat the lungs, with kidney disease we treat the kidney,” one patient commented. “Why, with chronic pain disease, would we not treat the pain??”

Another argued that thinking about pain in this way would “result in human misery on a massive scale.”

The medical profession, though, was shifting toward Ballantyne.

Last June, the American Medical Association voted to denounce the use of pain as a vital sign. The idea was proposed by the Medical Society of the State of New York. Daniel Young, the doctor from upstate New York, is a trustee of the group and was active in proposing the change.

“We have felt trapped now, for years, between patients wanting their pain adequately treated and the safety of the products we have available for treating their pain,” Young says. “The mandate that every patient has to be asked if they’re having pain has caused a big shift in where things went.”

The resolution passed through the AMA’s general membership at its 2016 summer meeting with little fanfare among the doctors. The group’s internal report on the topic concluded that “the notion of ‘pain as the fifth vital sign’ ... although intended to promote pain assessment and effective treatment, in general contributed to an increase in opioid prescribing.”

The next month, in July 2016, the Obama administration put out a dense, 186-page rundown of changes to how Medicare pays doctors. Something especially important happened on page 154: The government announced that it no longer wanted to give bonus payments to hospitals that did a better job of reducing their patients’ pain scores.

Hospitals said the reward “created pressure on hospital staff to prescribe more opioids to achieve higher scores,” the Obama administration noted in the regulation.

So the federal government made a decision: It would continue to measure hospitals on other dimensions, like how communicative doctors were or the cleanliness of the hospital. But it would no longer reward hospitals that did better work reducing their patients’ pain. Doctors wrote in to the Center for Medicare and Medicaid Services — almost universally praising the change.

In 2017, the academic journal Annals of Surgery continued keeping up the drumbeat. In a special issue on opioids and surgery, several high-profile surgeons made the case for giving up on the quest for zero pain.

“The goal of pain relief should be 30% to 55% improvement, and therefore the patient should be expecting tolerable pain levels, not 0 pain levels,” Harvard surgeon Haytham Kaafarani and his co-authors argued.

The noted physician and author Atul Gawande reiterated that goal elsewhere in the special issue. “We also have a clear responsibility to help stem the tide of drug overdose deaths,” he wrote, adding that the responsibility includes “counseling patients preoperatively to expect adequate pain control to function but not to achieve zero pain.”

V.

In 1996, James Campbell was a voice of a new movement. This year, he is a voice of dissent. He disagrees with the American Medical Association vote. He worries that for decades, it was easy for doctors to ignore and dismiss pain. He worries that decisions like these will move us back in that direction.

“Assessing and understanding the impact of pain doesn’t mean we write a prescription for an opioid,” he told me when I asked him about Ballantyne and Smith’s article. “If we don’t continue to assess, measure, and understand pain, we’re going back to the Stone Age.”

Prescriptions for opioid painkillers are declining, an unequivocal public health victory. This still leaves doctors with that same problem they had back in the 1990s: unrelenting, chronic pain that so far has no cure.

Modern medicine can do so many wonderful things. We have learned to transplant organs, eradicate infectious diseases, and pinpoint the genetic roots of illnesses. We haven’t come anywhere close to a safe and reliable cure for chronic pain.

“The problem of persistent pain is widespread,” said Kevin Vowles, a health psychologist at the University of New Mexico. “The evidence base for interventions like surgery or medications has never been super strong for getting people back to participating more fully in life.”

Part of the problem seems to be of our own making: The US government has historically committed fewer research dollars to pain than it has to other diseases. Chronic pain will, in 2017, receive about one-sixth of the funding that the NIH spends on cancer research and a quarter of what the agency spends on rare diseases.

Vowles works with clients who have typically spent years searching for a pain cure, some experiencing prescription painkiller addiction. And instead of focusing on fixing their pain, he works with them to figure out how they can get back to the valuable activities in their life even if their chronic pain persists. He says he sees a lot of dads who want to walk their daughters down the aisle, or grandparents who want to pick up their grandkids.

“Pragmatic pain acceptance is directed at better living,” Vowles says. “The pursuit of pain relief can often be the cause of more disability, and it can dominate one’s life. What I do might be called pain rehab, where we basically try to get to the very end of the process — which is getting back to living.”

Pain acceptance can feel pessimistic. It means giving up on the promise that drug companies happily sell — that you can fix whatever ails you, that you just have to keep looking for the right pill. It suggests that at some point, it’s time to stop chasing a cure.

But there is something optimistic about pain acceptance too. Because it means that patients don’t have to get bogged down in searching for a solution that doesn’t exist — that they focus on doing the best they can to continue activities that bring their life value, and how to achieve them, rather than on a pain score.

In Williamson, Beckett is treating pain the best he can too.

Sometimes that means prescribing opioid painkillers for short-term and acute pain. But many other times, it means prescribing things that don’t fix the pain — but distract from it.

Beckett has started a series of monthly 5k runs in Williamson that attract about 200 or so runners and walkers. He helped launch a community garden and a farmers market. “You can do that — just exercising and getting out when the pain is at its worst, and looking at ways to divert your mind from it,” he says.

It is hard, he says, to be a doctor who can’t solve his patients’ problems. But the alternative — the drug deals, the overdoses, the debilitation of his city — is worse.

Editors: Ezra Klein and Jim Tankersley
Illustrations: Angie Wang
Copy editor: Tanya Pai
Project manager and producer: Susannah Locke

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