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Pain and Suffering | Ann Neumann

21-27 minutes 6/3/2024

The first time I saw a dying patient suffer through extreme pain came shortly after I joined a hospice volunteer program in Manhattan. I was assigned to visit Marshall, a former welder, who occupied a double room in an all-HIV facility on Rivington Street on the Lower East Side. Our first visit was quiet. Marshall seemed too demoralized by his condition to entertain a guest, so we watched TV. But when I arrived for our second visit, I found him literally doubled over. He clutched his knees and slightly rocked his body. Marshall’s roommate, Timothy, told me that he had been reprimanded by staff for getting Marshall some Advil when he asked for it. But the medication Marshall was being given for pain by medical staff didn’t last long enough. I hurried down the hall to summon the nurse, who seemed hesitant to respond. She had been instructed to administer pain medication every four hours. Within two hours of dosage, Marshall was experiencing what’s called “breakthrough pain,” and then he was left to withstand that pain for another two hours. What could she do? I protested loudly. Finally, a doctor and a primary nurse came to Marshall’s bedside. One of them suggested giving Marshall a drug they had not yet tried, one with demonstrated efficacy: methadone. The nurse shifted from one foot to the other. “It’s highly addictive,” she said, as if the conversation were over. What possible difference could that make? “He’s dying,” I told them.

This was 2014. Methadone was considered a “junkie drug,” what addicts took to get off heroin—and by this time, heroin use had been rising rapidly. In fact, the United States was in a “third wave” of opioid abuse, which started with widely prescribed painkillers in the late 1990s, then a rise in heroin deaths beginning around 2010, followed by a rise in deaths from illicit opioids such as fentanyl beginning around 2013. By 2014, there were twenty-eight thousand annual drug-overdose deaths in the United States. The widespread awareness of what is often called an “opioid epidemic” explains the nurse’s warning that day about the addictive risks of methadone. There were several obstacles to treating Marshall’s pain, but the greatest was the stigma of opioids.

The stigma is not hard to understand: magazine features, books, and movies for two decades now have chronicled America’s drug problems, including the rapacious role of drug manufacturers like Purdue Pharma, which made OxyContin a household name and enriched the Sackler family in the process. The publicity of their misdeeds led lawmakers on a campaign against opioid prescribing. Yet the crackdown had an unintended consequence, one little examined today: it has increased the suffering of patients who experience chronic pain, as medications that were once heavily promoted have since been restricted. And it has added to the needless agony of those like Marshall at the end of life. I told the story of Marshall and others like him in my 2016 book, The Good Death. Since that time, the double-sided problem has only seemed to worsen. Even morphine, which has long been used to ease the final days and hours of patients in hospice care, is only available to the fortunate ones, as supply chain problems have combined with fears of overuse, leading to vast inequities as to who dies in terrible pain.

This unequal access to pain medications is part of a worldwide problem, stretching far beyond the privileged precincts where hospitals are well-stocked with the latest in medications. Last summer, the World Health Organization released “Left behind in pain,” a report that zeroes in specifically on lack of access to morphine, which it notes is “the most basic requirement for the provision of palliative care.” Worldwide, about half of all deaths each year occur while patients are experiencing “serious health-related suffering,” due to poverty, racial bias, limited access to health care—including palliative care—and laws that restrict opioid distribution.

International respondents to the WHO survey pointed to policies or laws that “overly focused on preventing illicit use and unduly restrictive administrative requirements for prescribing or dispensing morphine.” One survey respondent noted, “The regulatory controls are so many that the pharmaceutical industry doesn’t find [morphine] worth manufacturing as the profit is low and regulation is high. The regulators are more concerned about misuse than easing the pain of patients.” Survey respondents from a range of regions, including the eastern Mediterranean, western Pacific, Southeast Asia, and Africa, expressed concern about legislative or regulatory barriers. Other factors include an unreliable supply chain, lack of funding, understaffing in clinics and hospitals, and “misinformed attitudes and perception.” Lack of access to health care coverage is also a major issue.

Inaccurate understanding of morphine’s properties is common around the world. Sixty-two percent of the respondents from the Americas believed that morphine was only “suitable for use in people near the end of life.” Such “negative attitudes and perceptions” regarding morphine and other opioids suggest a misunderstanding of how addiction works and how the medical profession should balance the benefits of opioid use for pain with the dangers of powerful drugs. These negative attitudes include “associating opioid use with imminent death” and believing “that opioids can immediately and definitely cause dependence and that opioids are always harmful or even lethal.”

Today there are more than five hundred drugs that are derived directly or synthetically from opium, a product of the poppy plant. They are used to treat a vast range of ailments including congestion or cough, post-surgery pain, chronic pain, addiction, and end-of-life pain. “Opium and its derivatives are all things to all men and have been so for centuries,” Martin Booth wrote in his 1999 book, Opium: A History. Today, not just in the United States but around the world, opium and its derivatives are part of two huge markets, delivered either by the pharmaceutical industry or the illicit drug trade. And perhaps more than ever before, the extraordinary power of opium products to alleviate pain is complicated by the language of addiction.

The Power of Myth

Some addiction experts offer a counternarrative about today’s much-discussed opioid crisis. In the late 1990s, there was a movement in the medical community to better address the pain that patients were experiencing, especially in the final weeks of life. With roots in the palliative care movement, which began with the establishment of hospice programs in the UK in the 1960s and the United States in the 1970s, this focus on pain relief emphasized better training for medical professionals: fear of addiction and biases within medicine were preventing doctors from prescribing adequate pain medication, even to those who were dying. But soon, at intake, patients were being asked what level of pain they were experiencing on a scale of one to ten, or to identify themselves on simple diagrams of faces ranging from a frown to a smile. And savvy pharmaceutical manufacturers rushed to develop medications that could supposedly treat pain without the addictive aspects.

The best, most cost-effective treatment for pain known to man is stigmatized and kept from those who rely on it to function.

OxyContin was patented in 1996 and aggressively marketed to doctors and the public, along with other new opioid drugs. This resulted in a surge of prescriptions, sometimes in large quantities. About two-thirds of those prescriptions were never fully used, so the country’s medicine cabinets were suddenly awash in prescription pills. These pills were often found by curious teenagers or family members, those experimenting with drug use, or those with prior drug experience. “Prescribing increased massively, and a lot of that increase did not go to people with pain,” Maia Szalavitz, author of Unbroken Brain: A Revolutionary New Way of Understanding Addiction, told me. “If they were so horribly addictive,” Szalavitz said of those unused prescriptions, “how could this even be true?” In other words, the majority of those with legitimate prescriptions were not getting hooked. And as many as 80 percent of those using prescription opioids for a high were not getting them from a doctor.

Demand created a market: pill mills. Those dependent on opioids sought out their own prescriptions, while others began to sell their unused pills for extra income. Instead of addressing drug use with treatment—methadone, buprenorphine, abstinence programs—states and the federal government began to respond by limiting the quantity of opioids that doctors could prescribe, hurting legitimate pain patients, who were now unable to get the medication that allowed them to function, and leaving those dependent on or addicted to illicit prescription medication in deep withdrawal.

“Do you really think that’s not going to generate a local street market?” Szalavitz asked. So, in “towns where there was deindustrialization, a lot of despair, long family histories of addiction to things like alcohol,” she said, people were forced to find a new drug source. Heroin and street fentanyl filled the void. Those addicted to or dependent on prescription opioids were now using drugs that were not commercially made, their dosages variable, unpredictable, and often deadly. Between 2011 and 2020, there was roughly a 60 percent decline in opioid prescriptions in the United States. Yet, the overall overdose death rate per capita, across all drug categories, tripled.

This way of looking at the opioid crisis is worlds away from the prevailing narrative that Big Pharma alone was driving up the overdose death rate. Pharmaceutical companies were indeed pocketing billions of dollars. Yet, taking down Purdue Pharma didn’t solve the opioid problem. No laws were passed to change marketing practices, and little effort was made to support those with addiction through treatment and training, or through economic policies and health care access. And hardly any attention was devoted to the people with pain who now had to struggle to find medications that had previously allowed them to live their lives.

When I asked Szalavitz how she made sense of this misleading popular narrative about addiction and overdose, she told me, “You couldn’t say that the people who got addicted to prescription opioids were starting by recreational use because then white people wouldn’t be innocent—and journalists like innocent victims. We had to get it wrong in order to convict the drug companies.” From this vantage point, every story of, say, a high school athlete getting hooked on Oxy after knee surgery is misleading as an average portrait, defying both the data and what experts know about addiction. Most people with addiction begin drug use in their teens or twenties, which means it’s likely that those proverbial student athletes getting hooked on Oxy were already experimenting with drugs. “If you don’t start any addiction during that time in your life, your odds of becoming addicted are really low,” Szalavitz told me. “So, what are we doing? We’re cutting off middle-aged women with no history of addiction, who are not likely to ever develop it, and have severe chronic pain, to prevent eighteen-year-old boys from doing drugs that they’re going to get on the street instead.”

Understanding—and addressing—addiction is what’s missing from current drug policy. Instead, some types of drug dependence are demonized, dependence is conflated with addiction, and the best, most cost-effective treatment for pain to exist at this time is stigmatized and kept from those who rely on it to function. As Szalavitz explains it, dependence is needing an increasing dose of a drug to function normally. Many on antidepressants or other stabilizing drugs are not shamed for their dependency. Addiction, Szalavitz says, is using a drug for emotional not physical pain; it is “compulsive drug use despite negative consequences, so increasing negative consequences does not help, by definition.”

Truly facing and addressing addiction requires a new vocabulary—and accepting that “say no to drugs” is an inadequate response. It also requires an examination of far-reaching economic and social challenges in our culture: lives of despair, racial prejudice, economic insecurity, isolation, inaccessible health care, expanding police forces and prisons, and, of course, politics. For politicians, “drugs are a great way to get elected,” Szalavitz said. They can campaign on tough drug laws, claiming that their policies will decrease overdose deaths. “It’s really infuriating,” she told me, “because our prejudice against pain and our stereotypes about addiction push us toward solutions to the problem of opioids that simply do not work.”

Joy Plants

Opium and its derivatives are the most effective pain relievers known to man. Humans have used poppies since prehistoric times, though there is only conjecture as to why the poppy evolved to produce mind-altering alkaloids. (One theory holds that the poppy’s relationship to humans is symbiotic, the powers produced in the plant ensuring its continued cultivation.) Poppy seeds and pods have been found in Neolithic villages in Switzerland. They were cultivated in Mesopotamia around 3400 BCE. The Sumerians called the poppy hul gil, “joy plant.” Opium was found in the Egyptian tomb of Cha, dated to the fifteenth century BCE. It was also common in ancient Greece and is likely the nepenthe that Homer records Helen mixing with wine in the Odyssey.

The extraordinary power of opium products to alleviate pain is complicated by the language of addiction.

The effect of opium, according to Booth, the author of Opium: A History, is that it “alters the recognition and perception of certain sensations.” Medieval doctors relied heavily on opium, including laudanum, which by the 1660s referred to the combination of opium pills or pellets and alcohol, which cut opium’s bitter taste. Opium has been used to treat nearly every ailment, from diarrhea and appetite suppression to coughing; from headaches, sore muscles, and venereal diseases to cholera; from pain to even opioid addiction. Its use accompanied the advent of modern medicine, eradicating early medical practices such as cupping, bloodletting, and the topical application of leeches.

Until the mid-1800s, opium was also largely considered to be harmless, and it was prescribed widely, even to infants. The level of consumption throughout Britain, Western Europe, and America “was staggering,” Booth writes. But a few prominent deaths, attributed to opium use, and the publication of Thomas De Quincey’s Confessions of an English Opium-Eater, which first appeared in the 1820s and was reissued in 1856, began to change the way opium was perceived. “Mortality statistics started to register opium as a cause of death. In 1860, a third of all fatal poisonings were due to opiates,” Booth writes of Britain. The number of deaths was likely due to the unreliable strength of opium and opium mixtures, then unregulated and unstandardized. That changed with the 1868 Poisons and Pharmacy Act, which restricted the sale of opium to chemists. Afterward, all opium packages were marked with “poison” and a skull and crossbones. The act made it a controlled substance, in the domain of the medical and legal world.

Meanwhile, in 1805, Friedrich Wilhelm Sertürner, a German pharmacist’s assistant, had managed to isolate the alkaloid morphine. It was named for Morpheus, the Greek god of dreams. The alkaloid proved to be ten times stronger than opium. It was cheap to produce, too, and had a standardized measurement of strength. It was primarily ingested orally or used as a suppository until about fifty years later, when syringes were introduced. Injection of morphine directly into the bloodstream bypassed the drug’s bitter taste, as well as the nausea and intestinal disruption it caused, providing immediate relief. According to Booth, doctors surmised that, unlike opium, morphine was not addictive, and injection use spread among the middle and well-to-do classes, syringes being too expensive for the poor. But a wave of panic over addiction did eventually arise, causing authorities to once again clamp down on use.

In 1874, a British pharmacist boiled morphine with acetic anhydride, hoping to produce a nonaddictive alternative to morphine. He created diacetylmorphine, which was picked up by the German pharmaceutical company Bayer Laboratories, the developers of aspirin, in 1898. It proved to be incredibly powerful at reducing pain. They called it heroin, from the German word heroisch, or heroic. Heroin was simple and cheap, its potency easy to control. “History repeated itself,” Booth writes. “No sooner was heroin freely available than extravagant claims were made for it. It was even mooted as a cure for morphine addiction.” Yet another cycle of use, abuse, and control ensued. At one time or another, all these drugs were blamed for addiction; the medical discipline had little understanding of how addiction works in the human brain.

Today we call the extensive family of opium-derived drugs opioids, but the term obscures the difference between opiates, the alkaloids extracted from the poppy plant or derived from it—morphine, codeine, heroin—and opioids, the more than five hundred drugs fully or partially synthesized from chemical components of opium. The partially synthesized include hydrocodone (Vicodin), hydromorphone (Dilaudid), and oxycodone (OxyContin, Percocet). The fully synthesized include dextromethorphan (NyQuil, Robitussin, Theraflu, Vicks), dextropropoxyphene (Darvocet-N, Darvon), methadone (Dolophine), meperidine (Demerol), and the infamous fentanyl (Sublimaze, Duragesic). The catchall term, then, is a linguistic manifestation of the way that addiction has colored our understanding of an entire class of drugs, some of which remain medically indispensable.

War, What Is It Good For?

The so-called war on drugs may have ramped up in the 1980s during the Ronald Reagan administration, but it is the experience of soldiers in the Vietnam War that set off an addiction preoccupation in American politics. Vietnam was flooded with heroin during America’s war there, with both Vietnamese and American soldiers regularly using the drug. A headline from the New York Times in 1971 called it an epidemic. A task force was created to study soldiers’ addiction. What they found was that a surprisingly high number of soldiers—95 percent—discontinued their heroin use once they returned to the United States. For decades, then, researchers have understood that changing one’s circumstances and environment can ease drug addiction.

Morphine and other opioids most often used for pain in a clinical setting are now given only selectively, even for those who are actively dying and happen to have good care.

Yet, even as many states have legalized cannabis, both major parties in the United States continue a national war on drugs policy, using the carceral state to punish addiction and the illegal drug trade while disproportionately and deliberately targeting Black Americans for racist and political purposes. The language tends toward the militaristic: drug users are said to “battle” addiction; police forces fight drug-related crime while wearing military-grade equipment. And the connection to actual war continues: veterans of recent U.S. wars experienced a 53 percent increase in overdose deaths between 2010 and 2019.

The long association between warfare and opium suggests that powerful painkillers are used to escape not just physical pain but emotional misery. To extol the useful properties of painkillers is not to minimize the emotional pain revealed by the recent wave of overdose deaths. About fifty-five thousand U.S. soldiers died in combat in Vietnam over almost twenty years; from 1999 to 2021, more than 645,000 Americans died of an opioid overdose, whether prescription or illegal, most often both. (Although these rates of overdose have consistently risen over the past two decades, projected numbers for 2023 may show a slight decrease.) Countless more—an estimated 3.8 percent of all Americans, over ten million people—struggle with opioid use disorder, or addiction. In 2019, six hundred thousand overdose deaths were attributed to opioids worldwide.

More than two decades since opioids have been linked to rising overdose deaths, there has been little advancement in the United States toward finding better ways to reduce the misery that causes the problem. The old ham-fisted efforts have been attempted: tough-on-crime policing; blaming shadowy “drug cartels” and immigrants; and laws, passed in more than three dozen U.S. states, that limit prescribing and dispensing opioids. Morphine and other opioids most often used for pain in a clinical setting are now given only selectively, even for those who are actively dying and happen to have good care.

The key to addressing both the crisis of opioid deaths and the crisis of unequal access to pain management, then, is the most obvious and yet the most difficult thing: understanding addiction and its causes. Rather than shame and blame the drugs, the drug manufacturers, or the drug users, we will see no real progress until we compassionately tackle addiction’s roots in poverty, trauma, racism, policing, and inadequate health care. A society that has seen the kind of abuse of opioids the United States has experienced, along with widespread confusion about their proper use, is a society immersed in many varieties of pain.

The poppy plant produces two lucrative crops: opium and poppy seeds, the latter of which are most often used in baking or turned into oil. Although there are 250 species of poppy, it is Papaver somniferum—the name is derived from the Greek noun for poppy and the Latin word for “sleep inducing”—that is most often cultivated for opium. Two to four days after the flower blooms, a seed head forms, much like a rose hip, with a crown of anthers at the top. The pod, and the entire poppy plant, contain acids, fats, plant wax, gums, proteins, sugars, and the more than fifty alkaloids that give the poppy its medicinal properties, including morphine, noscapine, papaverine, codeine, and thebaine. It is from the pod that the purest form of opium “milk” can be easily extracted.

“Harvesting opium is an exhausting, back-breaking, and labour-intensive process,” Booth writes, “which can really only be done by hand and requires knowledge, experience, and dexterity.” The same is true of addiction treatment. Until we address the root causes of opioid addiction with care and commitment, those in pain—of all kinds—will continue to suffer the consequences.