Pain (35 page)

The courts share medicine's fundamental concern with relief—that is, the legal granting of compensation to make injured parties whole again. This was the kind of relief Jack Lemmon's character in
The Fortune Cookie
was seeking. The battle for relief, in the legal rather than the
clinical or political context, had its own theatrics—a cast of characters (wronged plaintiffs, defendants, expert witnesses who were often doctors, dramatic claims of harms done, and requests for reparations). The theatrics of pain in the legal arena also had its own evidentiary logic and political implications. As this book argues, it was in the law that pain relief expanded most dramatically as an issue; it was the courts that grappled persistently with the question of pain's measurement and proper relief in relation to fundamental questions of rights—from individual rights to disability relief in the 1960s
Page v. Celebrezze
and 1980s
Polaski v. Heckler
cases, to the right to die without pain in the 1990s, to the right of the federal government to limits the state's powers on such questions in 2006
Oregon v. Gonzalez
, to the right to relief through medical marijuana playing out today, and to the claim of fetal rights. These questions of pain and relief might start in the sick person's body or in a medical clinic, but increasingly it would be judges in high courts (John Brown in the 1950s and Sandra Day O'Connor in the 1990s) who played a powerful role in determining which medical theories of pain should be applied to the nation's laws of compassion.

If pain and relief often fractured Americans along partisan lines, compassion could also bring political opponents together—sometimes in unlikely ways.
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Hundreds of pages into the controversial Affordable Care Act (ACA), decried as “Obamacare” by its Republican critics, sits a provision on pain (Section 4305) that calls for advancing research and treatment on pain care.
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Its inclusion would seem to be on a continuum with liberal lawmaking, with the Left's enduring commitment to compassionately relieving the pain of others.

A closer look reveals that the provision had bipartisan roots, just like the Eisenhower SSDI law that preceded it by a half century. In this case, the provision in Obamacare dated back to George W. Bush's presidency, during which he promised to add compassion to conservatism. Even as the Left and Right fractured around fetal and end-of-life pain, some lawmakers sought compromises. In 2003, Representative Mike Rogers, a Michigan Republican, introduced a bill for a “national pain-care policy,” which California Democratic representative Lois Capps later cosponsored in 2007. The bill called for spending $26 million to tackle a handful of problems: to educate practitioners about pain care, to reduce barriers to
treatment for underserved groups, to support a national conference to re-evaluate pain management, and to pay for a public-awareness campaign. With an estimated fifty million adults suffering frequent and often disabling chronic pain from low back ailments, migraines, fibromyalgia, cancer, and other conditions, $26 million was a paltry amount. By contrast, that same year President Bush vetoed a bipartisan bill calling for an additional $35 billion for expanding health care to four million poor children; he had wanted a few billion dollars less in a program that already cost tens of billions annually.
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By comparison, $26 million was a minuscule sum, but in the politics of pain it was a grand gesture—for Rogers and Capps agreed that doctors were poorly educated on the topic of pain care, that undertreatment of pain was a particularly egregious problem for minority and poor populations, that some kind of pain summit of experts was needed, and that a modestly funded public campaign (akin to AIDS awareness) would move the nation's health forward. Born in the shadow of the continuing culture wars over pain, the provision sought the middle ground, yet it too would become a stage prop in the continuing American morality play about citizenship, belonging, and government recognition.
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It would take the turnover of presidential administrations and the Democratic takeover of Congress, but in March 2009 (weeks after President Obama's inauguration), the bipartisan Capps-Rogers bill finally passed the House of Representatives. An era of compromise around compassion had apparently returned. There were signs that the Senate might seriously consider the reform when, in early 2009, Senator Orrin Hatch (a Utah Republican who had been part of both the fetal pain and death with dignity pain debates) teamed with liberal senator Christopher Dodd, a Connecticut Democrat, to sponsor the pain bill in the Senate. Hatch announced that he hoped the funding would address inadequate professional training, support a “public-awareness campaign highlighting pain as a serious public-health issue,” and “create a comprehensive framework for addressing coordinated research” and greater training capacity of health-care providers. Opting against polarizing pain, Hatch spoke instead of cancer sufferers who “should not have to spend their final days in pain.” With such backing, prospects for reform in the Senate looked good.

But when President Obama declared his commitment for more sweeping health care legislation, he transformed the fate of the pain provision.
As happened so many times before, people in pain watched as their particular complaints (arthritis care, low back pain, undertreatment, skeptical caregivers, poorly educated physicians, legal surveillance) became swept into and defined by the broader political controversies of the time. Even with the Capps-Rogers bill inserted into the Democratic health-care reform package, Representative Rogers declared his opposition to the entire measure. He returned to the old songbook, portraying liberal compassion as a charade of selective punishment, a dose of pain for the majority driven by the misguided promise of relief for those in need: “Abraham Lincoln said, ‘You can't make a weak man strong by making a strong man weak.' And so what we've decided to do today is to abandon the very principles of America and say … we're going to punish the 85 percent of Americans who have earned healthcare benefits … to cover the 15 percent that don't have it.”
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Once folded into the ACA, the promise of pain reform narrowed, its transformation bearing a lesson about how fiscal concerns have often underpinned the Right's criticism of pain reform. The criticism had been lobbed by the AMA for decades: Who shall pay for people in pain, how much would their care cost, and (perhaps most important) would the private pain economy somehow be hurt by these public commitments? As the yearlong political drama over Obamacare stretched from 2009 into 2010, with serious debate comingling with silly accusations that the legislation would result in federal “death panels,” the dollars authorized in the Capps-Rogers House bill evaporated—stripped out as a concession to the fiscal concerns of Democrats wary of the stinging conservative critique of expansive liberal government. Gone was the funding for a campaign to inform the public of the high toll of pain across an aging population. There would be no public service announcement telling people of their pain treatment options—messages that perhaps would have competed on the airwaves with commercials for the latest arthritis drug. The provisions for more robust physician education died as well. The problems of the person in pain dwindled in importance next to the sweeping challenges of extending insurance to nearly forty million uninsured. With no funds allocated in the revised Section 4305, all that remained of the original Capps-Rogers bill was a modest requirement to form a commission and a provision for the Institute of Medicine to convene a conference to increase recognition of the problem, evaluate current
pain practices, identify barriers to treatment, and establish an agenda for action. In short, those in power and at center stage in Congress asked a chorus of experts to study the problem—to read from their own now-familiar script. The National Institutes of Health stepped in to fund the IOM study. Perhaps not surprisingly, given the scale of the ACA legislation, the broader reform agenda had sidetracked the cause of pain reform. Relief on this front, in other words, was deferred.

As requested by the ACA law, the resulting IOM study, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” was published on cue in 2011 and repeated many familiar concerns: doctors were poorly educated on the topic, public awareness about pain lagged, and politics and misguided concerns about addiction shaped how many doctors thought about the topic. Faced with chronic pain sufferers, the study noted, doctors' “reactions ranged from care and compassion to judgmental opinions that lacked compassion and sometimes devolved into blaming”
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As the leaders of the study noted, meeting the challenges posed by pain in America “will require a cultural transformation in the way pain is perceived and managed on both the personal and societal levels.”
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Published in the midst of a deep economic downturn and continuing partisanship (with cries for repealing the ACA and overturning it in the courts still resonant), the call for cultural change on pain relief had little traction. The theatrics of pain had moved on, with legislators now making political hay around the nation's widespread “economic pain.”
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For anyone now familiar with the drama—the twisting history and politics of pain in America—the notion that we have a cultural problem understanding other people's pain will not be surprising. The problem, I argue, though it often becomes manifest in medicine, begins in the human condition (aging, infirmity, and the realities of hardship) and quickly becomes complicated by the way the nation's social, legal, and political institutions conceptualize this condition. In 1987, amid that era's controversies over purging the disability rolls, Congress had called for another IOM study (“Pain and Disability: Clinical, Behavioral, and Public Policy Perspectives”). Those expert results, like the 2011 findings, had also called for improved education for the country's doctors, nurses, and care-givers. But the 1987 report also saw failures in government, calling for the secretary of Health and Human Services to “take the lead in ensuring
that a broad research initiative on pain and disability is undertaken within HHS and in cooperation with other federal agencies.”
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Nothing was done along those lines to educate the administrators and bureaucrats charged with managing the machinery of relief. Yet, the authors of the 1987 study rightly understood that the need for education could never be confined to medicine; enlightened thinking on pain and relief remains sorely needed in government, politics, and law.

A fundamental, vexing problem ripples through the history and politics of pain: Who should have the power to judge suffering—the patient or the doctor, the state or the federal government, the judge or the politician, the bureaucrat or the ideologue, the surgeon or the pharmacist? Who can detect true pain when they see it? Which of us knows whose pain is real and whose is being exaggerated or faked for so-called secondary gain? The pages above have shown how and why the skepticism about pain as fraud has shadowed sufferers, and they have also shown why questions about the nature of pain have had no easy resolution in the theater of politics and society. The question of pain has been politically, economically, culturally, and legally contentious over the past seventy years and will continue to be so. But just as contentious has been the issue of who has standing to judge and to speak for and about pain in America. One enduring aspect of this political theater is how much people in pain have had to fight to be heard amid the battles waged over them and on their behalf.

Pain, in this sense, does not belong exclusively to those who suffer; it also belongs to those who observe suffering. Here again, the insights of Talal Asad on pain prove helpful when he observes, “The ability to live sanely after a traumatic experience of pain is always dependent on the responses of others.”
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Surely, pain fraud exists, and there will always be skeptics who insist that too many people fit the caricature of the Jack Lemmon figure in
The Fortune Cookie
. But there is no need to add to the scrutiny of sufferers as deceitful; there is enough of that already. Instead I have focused on a broader world of deceit, false claims, fraud, and posturing. Pain fraud includes the artful quacks and drug makers throughout history, promising fast relief while fomenting anguish and dependence—a deceit worth examining. Another is the posturing of health and legal experts who theorize about the pain of others, their shifting theories often supported by sparse education, misplaced fears, and ideology. The poor
state of medical education on pain is no fraud, but surely it requires skeptical attention and reform. Then there are the slippery and sometimes deceitful political claims about people in pain made in the name of liberalism and conservatism; this has been my focus. Instead of indulging in more skepticism about people in pain, this book provides deeper insight into those who judge—attention to their political motives, their hypocrisies, their claims of compassion, their attempts to implement meaningful relief, their agendas for the nation, and why they so often turn the pain of others into political theater. It is good to look critically and closely at those who would judge because they, like every sufferer, also live in a world defined by both virtue and fraud.

I owe a great debt to many people who have provided challenging encouragement over the years and to many institutions supporting the research behind this work. The project was first conceptualized during my days on the faculty in social medicine at the School of Medicine and in the Department of History at the University of North Carolina at Chapel Hill; it grew in scope when I joined Rutgers' Department of History and the Institute for Health, Health Care Policy and Aging Research; and expanded yet again during my years at Princeton—straddling the History Department, the Program in the History of Science, and the Woodrow Wilson School of Public and International Affairs. At all those places (and in other places too numerous to list), this project benefited from astute comments from friends, insightful readings by colleagues, and constructive discussions with many students.