As a journalist for nearly 40 years now, I have watched with awe and admiration as people with AIDS, people with breast cancer, people with disabilities slowly awakened from their silence and their isolation. I have stood, notebook in hand, as sick men and women—once faceless statistics—took to the streets, to arcane scientific conferences, and to the bustling halls of Congress to make people pause and hear their stories. To insist that their humanity be taken seriously.
I have seen haggard men help hang AIDS quilts in cities around the world to remind the still-lucky, the still-healthy, that behind all the statistics were people with lives worth valuing. I have seen tired women walk miles to raise money for breast cancer, some still wearing the headscarves from chemotherapy that became their personal badges of courage, some carrying pictures of friends and sisters and mothers and daughters who had lost their lives to the disease.
It is time now for people in chronic pain to shed their stigma and their hopelessness. They—we—too, can stand up to legislators and demand serious money for pain research. They—we—too, can insist that medical schools teach pain. They—we—too, can insist on seeing doctors who believe them.
Fixing the chronic pain crisis in America is, as the Institute of Medicine so aptly acknowledged, nothing short of a “moral imperative.”1 For one academic year a while ago, I was a fellow in medical ethics at Harvard Medical School. I learned that in medical ethics, there are four basic principles: beneficence, nonmaleficence, autonomy, and justice.
The failure to treat chronic pain violates all four.2 Treating pain well is an example of beneficence, or doing good, which means the failure to do so violates this principle. Failure to relieve pain also causes harm, a violation of the second principle, nonmaleficence (“doing no harm”). Untreated pain can also destroy a person’s right to and capacity for self-determination, thus, to some extent, violating the third principle, autonomy. Failure to treat pain also violates the fourth principle, justice. It is unfair to ignore the humanitarian and financial costs of undertreated pain.
Better pain management is already beginning to be viewed as a fundamental human right. In 2010, delegates to the International Association for the Study of Pain conference in Montreal issued a declaration stating just that.3 Once pain management is truly viewed as a fundamental right, failure to provide it can become grounds for lawsuits under negligence law, criminal law, and elder abuse, as well as grounds for professional misconduct, as three leading pain physicians—Frank Brennan, Daniel Carr, and Michael Cousins—argued in an influential 2007 paper.4
There have already been some lawsuits. In 2001, a California physician was successfully sued under the state’s elder-abuse statute for not providing adequate pain treatment to an 85-year-old dying patient (Bergman v. Chin). The patient’s family was awarded $1.5 million.5 Two years later, another physician was successfully sued for inadequate pain management (Tomlinson v. Bayberry Care Center).6
The right to adequate pain management is also implicitly built into an explicit right—the right to the highest obtainable level of physical and mental health. This right is formally codified in the International Covenant of Economic, Social and Cultural Rights, which was enacted in the 1960s and went into effect on January 3, 1976.7
A number of countries have approved this covenant, though the United States has not, in part because of a longstanding American aversion to signing international agreements. (President Jimmy Carter did sign the covenant in October 1977, but Congress never ratified it.) Under the covenant, countries must ensure that all their people have access to essential medications, as defined by the World Health Organization (WHO). Since 1977, the WHO list of such medicines has included morphine. Even today, however, access to morphine is extremely limited or completely nonexistent in many parts of the world.
There’s an even more powerful argument for better pain care: that failure to adequately address pain borders on “torture by omission.”8 Two international treaties—the International Covenant on Civil and Political Rights and the “Torture Convention” (Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment)— both of which the United States has ratified (in 1992 and 1994, respectively), address this issue, at least implicitly. Both conventions condemn torture per se, which is defined as intentionally causing severe suffering with a specific objective such as to get a confession or information. The conventions also condemn cruel, inhuman, and degrading treatment, without regard to intention or motive.
This implies that countries have an obligation to protect people from torture and cruel treatment, said Diederik Lohman, a senior researcher in the health and human rights division of Human Rights Watch, an international, independent organization. “When people are experiencing severe suffering from treatable pain because doctors don’t have access to inexpensive medications—morphine costs only pennies per dose—or have never been taught how to use the medications, at that point, you may be able to say that the country is failing to protect patients with pain from preventable suffering,” he said.9
In February 2013, a United Nations report specifically declared that certain forms of abuse in healthcare settings “may cross a threshold of mistreatment that is tantamount to torture or cruel, inhuman or degrading treatment or punishment.”10 Specifically, the UN report said that countries’ drug control laws should recognize the “indispensible [sic] nature of narcotic and psychotropic drugs for the relief of pain and suffering” and that countries should review national laws and administrative procedures “to guarantee adequate availability of those medicines for legitimate medical uses.”
Kathleen Foley, a leading pain control activist and neurologist at Memorial Sloan-Kettering Cancer Center in New York, puts it more bluntly: Inadequate pain care constitutes “cruel, degrading and inhuman treatment. It is thus torture by omission.”11, 12, 13
When the Institute of Medicine, at the request of Congress, convened its blue-ribbon committee to assess chronic pain in America, I learned that there was one thing the committee was told it could not do—the one thing that might have made the most sense: recommend that Congress authorize the creation of an Institute on Pain at the National Institutes of Health.
As a practical and political matter, if there is no NIH institute dedicated to a particular disease, that disease is essentially disenfranchised. It is an orphan, nobody’s responsibility. Officially, lack of money was cited as the reason for not allowing the IOM to recommend a pain institute. And that’s valid, to a point. Setting up an institute on pain at NIH would mean taking money away from someplace else. Which means asking, explained John Loeser, a neurosurgeon at the University of Washington, “What are we going to un-fund to do something about the abysmal world of pain sufferers?”14 Not a political hot potato that anyone wants to touch.
But the money excuse is getting weaker as the economy grows stronger. Since the IOM committee was convened, at least one new center (a center is one bureaucratic notch below an institute) has been set up at NIH, financial crisis or no financial crisis. This suggests that the biggest barrier to a more robust federal commitment to better pain management is not lack of money, but lack of political will. And the political will could be there, if people with chronic pain forced the issue: One hundred million Americans in chronic pain is a lot of people, a lot of votes, and a lot of potential pressure on Congress.
Absent a real pain institute, or even a “center,” what we are left with are two small government entities, and both are weak. One is the new Inter-agency Pain Research Coordinating Committee (IPRCC), which was mandated as part of the Affordable Care Act (often called “Obamacare”) in 2010.15 It has had a slow start. In July 2010, Kathleen Sebelius, the secretary of the Department of Health and Human Services, signed the charter establishing the committee. In the fall of 2010, the NIH posted a notice in the Federal Register calling for nominations to the committee. But it was not until February 2012 that the members of the committee, to be chaired by Story Landis, director of the National Institute of Neurological Disorders and Stroke, were announced.16
The members—pain experts—come from disparate agencies within the government including, the Veterans Administration, the Department of Defense, the US Food and Drug Administration, the National Institute of Dental and Craniofacial Research (part of NIH), the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality, and the military.17, 18, 19, 20 Six outside pain researchers and six people from advocacy groups were also appointed to the committee.
But the committee doesn’t have much of a budget, and no line item— just enough money to pay travel expenses for committee members.21 Worse, the law requires only that the committee meet at least once a year. And the secretary of HHS, by law, has to review “the necessity of the Committee” only once every two years.22 Theoretically, the minute this committee’s existence is deemed unnecessary, this effort, minimal as it is, disappears.
The other federal entity is the Pain Consortium, a group of the directors who head five NIH institutes. It, too, is chaired by Story Landis. But again, there is no significant budget or staff.
In other words, despite the Institute of Medicine report, the government is still doing almost nothing to address the chronic pain crisis. Which means it will be up to advocacy groups such as the Pain Action Alliance to Implement a National Strategy (PAAINS) to push the government to do what it should.23
Beyond the moral and political issues, medical schools should teach pain simply because patients need doctors to understand it. Nine hours of pain education, on average, over four years of medical school is obviously not enough for a problem that afflicts 100 million Americans, some severely. But medical education, as we’ve seen, is still largely a feudal system. To introduce significant pain education would mean that some entrenched professors would have to start teaching pain themselves or cede class time so other professors could.
One way to force medical schools to teach pain would be to test graduating medical graduates on their knowledge of pain. Those who flunk simply wouldn’t get a license to practice medicine. “If you test for it, that will force medical schools to teach it,” says Scott Fishman, an anesthesiologist who heads the division of pain medicine at the University of California, Davis.24
Meaningful testing would involve putting detailed questions about chronic pain and pain management on the licensing and certification exams that graduating medical students take.25 This is a momentous task, but easier than it once would have been. Since 1992, there has been one national medical exam for MDs, the United States Medical Licensing Examination, and the Common Osteopathic Medical Licensing Examination (COMPLEX) for osteopaths. (This replaced different exams in different states.)26 Beefing up these two exams is a lot easier than it would have been under the state-by-state system.
Some efforts are underway to do this, according to Lisa Robin, who heads governmental relations for the Federation of State Medical Boards, the group that administers the exam in partnership with the National Board of Medical Examiners. (A separate organization writes the exam for osteopathic doctors.)
But in revamping medical education, it will be important not just to teach more neurobiology, but the whole biopsychosocial process of pain. “Pain is a different type of topic than other medical topics,” says Daniel Carr, an anesthesiologist who heads the Program in Pain Research, Education & Policy at Tufts University.27 “If you jam four hours of pain into an already-jammed curriculum and just focus on biology, all you do is indoctrinate medical students into the same, old intellectualized world of ions and receptors,” said Carr. And that would take students further away from the emotional, messy environment of pain. “That’s like trying to get your head around the meaning of a cathedral by studying bricks,” he said. Young doctors have to be taught to be “more comfortable dealing with the emotional distress and chaos of pain.”
I’d go even further. I am convinced that it’s impossible to understand intense pain until you’ve felt it yourself. Precisely because pain is so subjective and triggers such strong emotions, I think medical schools should follow the Johns Hopkins model of subjecting students to brief, experimental pain in the lab and getting them to process their emotional and physical responses.
Another way to get medical schools to do better job of teaching pain is to work through the Liaison Committee on Medical Education,28 the group that sets academic standards and accredits medical schools. This committee doesn’t tell medical schools exactly what or how to teach, but it can insist on standards for what medical students should learn. The committee, ultimately, wields a big stick: withdrawing accreditation.
The same applies to the Accreditation Council for Graduate Medical Education, the group that accredits the postgraduate (three-year residency) programs that young physicians must participate in.29 It also applies to the Accreditation Council for Continuing Medical Education, which accredits the refresher courses that practicing physicians must take in order to keep their licenses current and maintain specialty certification.30
In other words, we could use the power of tests, licensing, and accreditation to compel the medical education system to do better. We can also use publicity to highlight programs that are doing a good job, including the 12 schools named in 2012 by NIH as “centers of excellence” and “hubs” for the development, evaluation, and distribution of pain management curricula.31
Hospitals, too, can do more, though they’re doing better than they used to. In 2001, the Joint Commission on Accreditation of Healthcare Organizations, now known as the Joint Commission, established standards for pain management in the roughly 4,400 hospitals it oversees.32 (In addition to hospitals, the Joint Commission accredits ambulatory care centers, long-term care facilities and other healthcare organizations.) Without accreditation, a hospital can lose federal Medicare and Medicaid funds, which would be financially ruinous. The Joint Commission standards say that hospitals have an obligation to assess and manage a patient’s pain. If a hospital does not comply on pain as well as a number of other standards, the Joint Commission can take away accreditation.
Unfortunately, there are no good data on whether the Joint Commission’s pain standards have made a difference.33 To compel the government and medical schools to do a better job with pain will require, as the IOM report noted, a true “cultural transformation in the way pain is viewed and treated.”34 That will be hard, but not impossible.
Not long ago, I spoke with a young Massachusetts man, Andrew Chatzky, whose chronic headaches ultimately prompted him to join a pain support group, the first time in his life he had ever done such a thing. Upon joining the group, the leader asked what he hoped to get out of it. “Just one and a half hours a month where I don’t have to hide that I am in pain,” he told me.35
That doesn’t seem like much. But to him and other people in severe, chronic pain, even just a few hours being with other people who understand chronic pain can help.
Ultimately, for people who live with chronic pain, the goal is to live life as fully as possible despite the pain. This means many things.
It means exercise. It means using opioids and other powerful drugs if you need them, and using them responsibly. It means getting whatever mental health support you need, not because emotions are causing your pain but because emotional distress is part of pain.
It probably means putting together your own program of healing— integrating the best of Western and complementary medicine. Some hospitals and pain clinics integrate all this for patients, but many do not, which means you may have to do it yourself. But think of it this way: If you find five things that each help a little, with luck you may make a significant dent in your pain.
Most profoundly, living fully despite chronic pain may mean acceptance: That chronic pain may be something you have to deal with every day. That you may never find the underlying reason for the pain, or the perfect cure. That you may have to make big adjustments in your life— doing what you still can and letting go of the rest.
That is not easy, obviously. But isn’t that, basically, what life is all about?