Outlook

Our dangerous fear of pain

We used to know how to manage discomfort. Our quest to banish it brought on the opioid crisis.

Kim Ryu for The Washington Post
By

One of the first things I learned about pain was its value.

I was a third-year medical student in 1976. My first clinical rotation was in general surgery. The chief resident explained that a patient’s abdominal pain was the most useful tool we had in distinguishing the life-threatening condition of acute appendicitis from a more benign ailment such as stomach flu or constipation. He warned us not to treat that pain before the attending surgeon had a chance to place his hands on the patient’s abdomen. We were also encouraged to listen carefully to the patient’s experience of pain, the timing, the duration and any factors that made it better or worse.

Outlook • Perspective
James D. Hudson is the medical director of Mary Free Bed Pain Rehabilitation Program in Grand Rapids, Mich. Follow @MFBrehab

Forty years later, our concept of pain couldn’t be more different. Instead of learning from pain, we now regard it as an illness in and of itself. Insurance companies, health-care providers and drugmakers have all worked to increase the public’s fear of pain, leading us to see it as something to be treated, eliminated, banished — never lived with or accommodated or managed — lest it destroy us. They turned our natural fear into big business; our fee-for-service system has multiplied treatments based primarily on the financial rewards for pharmaceutical companies, doctors and hospitals. That attitude shift is perhaps the most overlooked explanation for an opioid crisis that kills tens of thousands of Americans every year.

It’s good to have a healthy fear of pain. It protects us from injury and reminds us to allow time for healing. Acute pain can be made more tolerable by a short course of opioid medication (the Centers for Disease Control and Prevention recommends only three to seven days, even after major surgery or injury). And there is a good case for using opioids over longer periods to treat end-stage cancer and other terminal ailments that can bring unbearable suffering. Palliative care in those situations is almost always necessary and compassionate.

But otherwise, the fear of pain, and the belief that a pain-free existence is optimal or even possible, has been a catastrophe for patients. Before the opioid revolution, doctors understood that pain was important to keeping us safe, to be lived with and managed. Even if this meant we bore frequent episodes of discomfort, that was better than the nationwide crisis America faces today. Life isn’t “pain free.” If we want to end the epidemic of addiction, we need to relearn that lesson.

Early in my career, I worked at a chronic-pain rehabilitation program in Grand Rapids, Mich. Here I was exposed to patients with incurable pain, most commonly in their backs. Many had undergone multiple operations; others suffered with neck and extremity pain; some were victims of auto accidents or work-related injuries. Then there were those with less-understood maladies such as phantom limb pain, fibromyalgia or complex regional pain syndrome. The treatment focused on helping people get their lives back despite the pain.

In those early years, some patients came in with pills, but they tended to be relatively mild pain relievers like codeine and ibuprofen, and in rare cases a drug called Percocet (one of the first formulations of oxycodone, approved by the Food and Drug Administration in 1976). Then things began to change.

In the 1990s, Jack Kevorkian, a Detroit pathologist who had previously advocated harvesting organs from death row inmates, began using his lethal-injection machine to assist “clients” in ending their lives. His medical license was revoked, but before he was finally convicted of second-degree murder in 1999, he had assisted more than 100 people in ending their lives. He argued that this was compassionate assistance for patients with intolerable suffering, igniting a national debate about the wisdom of “death with dignity."

He challenged our profession, saying doctors did not care enough for people in agony. The implication of his argument was profound, equating life with pleasure and health care with an escape from pain and suffering. And the publicity Kevorkian received — news coverage, books, a “60 Minutes” profile — had a dramatic impact on the practice of pain medicine. In 1995, the president of the American Pain Society started a campaign to begin treating pain as a vital sign and an illness in its own right, instead of a symptom of an injury or an underlying condition. State legislatures were lobbied to ease restrictions on opioid analgesics, and enforcement was relaxed. Opioid manufacturers started aggressively marketing their products to physicians and, according to a study in the journal JAMA Network Open, this marketing correlated with overdose deaths. The CDC has thoroughly documented the rapid rise in opioid prescriptions and deaths since 1999.

Many doctors listened to the marketing campaign. In our hubris, we began to think we had the capacity to banish chronic pain. Pharmaceutical companies were developing ever stronger and longer-lasting opioids, and surgeons were replacing more and more worn-out joints. New techniques meant that pain anesthesiologists could block nerves, sever the signals to the brain, and insert catheters or electrodes into spinal columns and brains. Pain was to become a thing of the past, conquered by modern medicine.

As part of the push to defeat pain, “physician experts” compensated by drugmakers hawked these medications at conferences, telling doctors that the new and more potent analgesics were not addictive when prescribed for pain. They told us that there was no upper limit on dosing, that patients would develop tolerance to the medication and that some would need extremely high doses to control their pain. But not to worry; this was normal: A new, unsubstantiated ailment called “pseudo-addiction” was offered as an explanation for the patients who ran out of pills early and borrowed more from friends and family or got them on the street; this wasn’t because they were addicted but because their doctors were under-prescribing. In at least a few cases, physicians lost court cases accusing them of undertreating pain. (No empirical evidence has ever shown that pseudo-addiction is real.)

This evolving outlook on pain created a flurry of new business opportunities. Physicians and health systems benefited from an explosion of diagnostic testing with CT and MRI scans, for which they could bill insurers, and which led to a rapid rise in invasive treatments, injections and surgical procedures without adequate scientific proof of their long-term benefits. Incidence of spinal fusions, for instance, varies twentyfold depending on the area of the country you live in. Unethical medical practitioners were opening “pill mills,” often taking only cash for almost unlimited amounts of addictive medications with no real attempt to make a diagnosis or assess the need for such prescriptions.

Fear of pain can also be aggravated by pain specialists or surgeons. Patients have told me that some practitioners planted the seed of fear as soon as their treatment ended: Warning them that they would eventually need another surgery or shot. That they should never lift more than five pounds unless they wanted the pain to return. Or, if patients declined treatment, that they would end up in a wheelchair. Patients are not in a position to regard such recommendations skeptically, and second opinions are expensive, time-consuming and unlikely to countermand recommendations made by a surgeon who has operated on the patient.

Insurance companies also bear significant blame. They reimburse interventional pain treatment so handsomely that these practitioners have become some of the highest-paid specialists in the country. The Medical Group Management Association reported that anesthesiologists who specialize in pain management earn almost $530,000 on average annually, making this a lucrative specialty. In comparison, primary-care providers make less than half this (while the average physician makes $300,000), and most end up working for large health-care systems that pressure them to see more patients, a pattern correlated with an increase in prescriptions and a decrease in time educating patients about lifestyle changes and self-management.

The American public is not benefiting. Life expectancy, which had been rising for the past century in the United States, began falling in recent years because of increases in suicides and opioid-overdose deaths (400,000 fatal overdoses between 1999 and 2017). According to the National Institutes of Health, 21 to 29 percent of patients who are prescribed opioids for chronic pain “misuse” the drugs, and there is no evidence that we have any less pain. The Midwest, where I practice medicine, saw opioid overdoses increase 70 percent from July 2016 through September 2017. Meanwhile, our country spends more on the treatment of chronic pain then on cancer, heart disease or diabetes.

To this day, we have no objective way to measure a person’s pain or suffering. It is a subjective experience, and fear of it can lead patients to feel it more acutely. Research has shown that disability is driven more by fear of pain than by the degree of pain itself. Making pain a vital sign and judging the quality of medical care by how often we ask someone to rate their pain, and then treating it aggressively, have paradoxically increased both our fear and our experience of pain.

Patients with chronic pain syndrome often find that things that shouldn’t hurt do, and things that should hurt a little hurt a lot. Their pain doesn’t remain in just one area. It moves around and spreads. They suffer headaches, irritable bowel syndrome, interstitial cystitis, fibromyalgia, insomnia, and sensitivity to light, sound and smells. Their arthritis is more painful. The simplest daily activities hurt, and they become afraid to move. They often take a long list of prescription medications and supplements, and undergo multiple injections and surgeries, all in a futile attempt to feel better. Their pain is real, and the vast majority of them are not addicts. They take their medications as prescribed, but the drugs just aren’t working anymore.

None of this is predestined, and if we want to reverse the opioid crisis, a new approach to pain is a good place to start. American medical schools do a poor job of teaching the latest in pain science. Many are still teaching the 1965 “gate control theory,” which treats pain as a localized physiological phenomenon, but that concept has been supplanted by the superior “neuromatrix model,” which regards pain as a holistic experience (shaped not just by biology but also by psychology, stress, sleep and other factors) and goes much further in explaining what we see in our chronic-pain patients. Most of what is taught to medical students and residents is how to prescribe medications for pain — and almost nothing about the complexity of the body’s pain system or the ways that non-pharmacological treatments can help control it.

Patients, understandably, don’t come to the doctor wanting to learn how to accept pain. They want to get rid of it. Whenever reasonably possible, that is what doctors should do. But it comes at a cost: Our present system overpromises and underdelivers on relief, fostering dependence in the process.

One way of reorienting patient thinking along these lines comes from the multidisciplinary pain clinics pioneered by the late John Bonica, a pain specialist at the University of Washington. Bonica proposed that we look at the whole person. Doctors who follow his lead examine a patient’s physical and mental health, their medications, how they think, move and behave. They look at a patient’s passions and how their current life stacks up to the life they really want to live. Education is a cornerstone: They teach patients how their nervous system can either calm their pain or amplify it, then give them the skills to direct that system.

New approaches hope to teach self-management by educating patients about their bodies and nervous systems, reducing fear of pain, and treating depression and hopelessness — partly by getting them back to exercise and normal activities. Helping patients resume their lives rather than focusing narrowly on eliminating pain changes their outlook. Instead of taking pills and awaiting their next epidural, they calculate the costs and benefits of getting up and engaging in life again. They invariably fear that the pain will be too great and their ability to tolerate it too limited, and this is where caring professionals can help lead them through a step-by-step management program. Patients learn how the thoughts they have, the words they use and the beliefs that underlie them can either increase or decrease their nervous system’s danger signals.

In many ways, learning to live with chronic pain is like learning to live next to the El in Chicago. This aboveground transit system is old and loud. It roars past homes and businesses. Nearby residents feel the vibrations; it can be so noisy that they pause their conversations while the train goes by. Yet those who think a lower rent is worth the annoyance report that the sound soon ceases to be disruptive. You get used to it. Getting angry every time a train passes is a sure way to obsess over it. Our body’s pain system works the same way. The more we learn to calm it down, the less it bothers us; the more we try to be pain free, the more it takes over our lives.

Fixing our health-care system isn’t as easy. Financial incentives are set up to increase health-care delivery, not the overall health of the population, and Medicare-for-all wouldn’t address this problem. But one fix is for insurers to scrub the rules that make it cheaper for patients to continue failed pain treatments, surgeries, injections and medications. Instead, they should push for conservative care, such as physical therapy, pain neuroscience education and multidisciplinary pain rehabilitation programs, which are low-risk, high-reward enterprises that focus on improving a patient’s function. These interventions require an intensive period of treatment, but they’ve been shown to be cost-effective, giving patients a shot at becoming the people they used to be.

Credits: James D. Hudson

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