One of the doctors I observed kept a yellow plastic skeleton in his office. As he earnestly explained to patients their problems, he would point helpfully to the skeleton. The patients would look at him with the same baffled horror I recalled having as they realized that he thought there was an analogy between it and them.
While the doctor uses medical science to understand pain, the patient has constructed a personal narrative, one that weaves religious, mythical, and psychological elements with fragments of science, like a spider’s web, suspending the patient above the abyss. Some of these narratives relieve suffering; others add to it.
In her memoir of rheumatoid arthritis, Out of Joint, Mary Felstiner writes of her fantasy of an Angel of Anatomy that descended on her after the birth of her beloved daughter Sarah, sparing her daughter and settling on her. The fantasy was inspired by something she had once read, to the effect that there is a higher incidence of the onset of RA following childbirth. The fantasy seems positive, turning her disease (about which she had no choice) into the necessary consequence of a joyful choice—the price of having a child. She also imagines that the Angel of Anatomy will spare her other diseases, since in having RA, she’s done her share.
But most medical fantasies are not positive. Olive, who had come to a pain clinic I was visiting, had developed chronic burning pain in her breast following a mastectomy. Speaking with her afterward, I came to see that she and the doctor had very different interpretations of this pain. A forty-seven-year-old executive at a financial firm, she was used to making data-driven conclusions. In regard to her body, however, she had taken a ghost of medical fact and perverted it to torture herself with.
She had read that women who had babies had a reduced risk of breast cancer. When she was younger, she had terminated two pregnancies. If she had had a baby instead of an abortion, she reasoned, she wouldn’t have had the cancer. (In fact, she had had the abortions in her thirties, and the dramatic reduction in breast cancer occurs only in women who have a baby before age twenty; having children after age thirty actually increases the risk.) The cancer turned out not to be an enduring punishment, after all, though; it went into remission. But she was left with an eternal reproach—the pain. The pain was a punishment for the abortions. If it weren’t a personal punishment, she wondered, why did she, in particular, have pain from her mastectomy when other women had none?
Had she and the doctor been communicating well enough that he had ferreted this out of her, he could have given her the medical explanation. Indeed, a significant percent of women used to complain of chronic pain following radical mastectomies. Their pain was often interpreted as a psychological phenomenon: they were just “missing” their breasts. But in the early 1980s, Dr. Kathleen Foley at Memorial Sloan-Kettering Cancer Center in New York identified the pain as being caused by the severing of a major thoracic nerve during surgery. The technique is often performed now in such a way as to spare the nerve, but in Olive’s case the nerve had been damaged. And apparently Olive was part of the fraction of the population that has a genetic predisposition for developing chronic neuropathic pain.
But that conversation with her doctor never occurred. Although the pain medication he prescribed eased her pain, it failed to address the suffering that arose from her mistaken understanding.
THE DIFFICULT PATIENT
When Sean Mackey, director of Stanford’s pain management clinic, was considering what kind of specialist to be, he noticed the way other physicians were always carping about chronic pain patients. The patients threatened suicide, misused opiates, treated the doctor distrustfully, failed to adhere to their treatment plans, and then blamed the doctor when they didn’t work. The doctors felt irritated, defensive, and frustrated in return and wished they could wash their hands of them.
“The more I heard, though, the more I realized that the difficulty of difficult patients lay not in the patients themselves,” Dr. Mackey told me, “but in the feelings they evoked in their physicians—and the physicians’ lack of training to handle those feelings.” He decided to specialize in pain medicine.
Dr. Mackey is one of those people who makes one reflect on how unfairly nature distributed energy and optimism, for he—radiating well-being at dawn rounds—seems to have captured the lion’s share. Tall and robust-looking, he has thinning strawberry blond hair, freckles, and a happy, joshing rapport with the residents. He possesses a Ph.D. in engineering as well as an M.D. (which he somehow managed to obtain simultaneously, in two unrelated programs), and he brings to medical encounters an engineer’s rational, data-driven approach along with an air of straightforward goodness. I found keeping up with his clinical schedule emotionally, as well as physically, exhausting; I periodically excused myself and wandered down to the cafeteria to get tea, but mainly to get away from the patients and their suffering.
I once read a paper entitled “Dealing with Difficult Patients in Your Pain Practice,” which provides advice for physicians. The paper cites a large study at a primary care clinic that treated patients for a range of problems. The study found that physicians rated more than 15 percent of patients to be “difficult” and had trouble working with them. The less empathetic the physician (as measured by empathy testing), the more likely he or she was to perceive encounters as difficult.
These problems are hugely magnified in the specific case of chronic pain patients, where pain causes psychopathology, which in turn hampers effective pain treatment. About 30 to 50 percent of chronic pain patients suffer from some kind of psychopathology, such as depression, anxiety, personality disorders, and substance abuse disorders (which the majority developed after developing pain). These problems can doom the treatment: untreated or undertreated psychopathology has been found to be the most important factor in unsuccessful pain treatment. Such patients not only report more pain and show more disability than other patients, they also benefit less from interventions such as pain medication, nerve blocks, and physical therapy than other patients. They describe themselves as “broken” by pain and feeling tormented, worthless, isolated, and unable to cope.
In response, Dr. Mackey and his colleagues developed what they called the Stanford Five, a list of points that they trained their residents and fellows to ascertain about every patient.
Patient’s belief about cause of pain (cancer, muscular strain, etc.)
Meaning of pain from patient’s perspective (association of pain with ongoing tissue damage, sinister ideas of pathology)
Impact of pain from patient’s perspective (has it disrupted their social, vocational, recreational activities?)
Patient’s goals (to be happier, to be less depressed, to go back to work or school)
Patient’s perception of appropriate treatment (including whether the patient wishes to be referred to other specialists)
At first these questions struck me as rather prosaic, but over the weeks during which I observed appointments at Dr. Mackey’s clinic—his own appointments and those of the residents he was training—I decided that they are genius. If a doctor doesn’t know what the patient believes to be the problem, he can’t try to persuade the patient of an alternative explanation. If he doesn’t know the impact of the pain, he can’t help minimize it and formulate functional goals for the patient. If he doesn’t know what kind of treatment the patient is looking for, he can’t either offer it or explain why he isn’t offering it. Patients who come in wanting drugs or injections are unlikely to follow an order for physical therapy unless the doctor works hard to persuade them of its necessity. Likewise, patients who want MRIs or referrals to other specialists are going to be dissatisfied with their treatment unless they receive them.
Finally, it is essential to discern the meaning of the pain from the patient’s perspective; in particular, Dr. Mackey focuses on the patient’s interpretation of his or her pain and whether the patient harbors what he terms “sinister ideas of pathology.” A patient who believes that his or her pain signifies a terrible disease that is causing o
ngoing tissue damage is going to experience the pain as worse than a patient who understands that—although chronic pain feels like an alarm bell—it is often a false alarm, signifying only that the alarm system is broken.
Ed, a young telemarketing manager, came to Stanford complaining of pain running into his testicles following a hernia repair operation. The pain was so severe he could barely sit down, yet he had refused pain medication. The resident probed his reasons why and elicited Ed’s belief that medication would “mask” the pain and that, then, the pain might be getting worse without his knowing it. The resident explained that pain is a perception, so it can’t secretly worsen without awareness. Conversely, if the medication mitigated his pain, he would not be deluded by the drug—he would genuinely have less pain.
“I don’t want to cover up the pain. I want the problem cured,” Ed said sharply.
“The problem is the pain,” the resident said. “The nerve was damaged or severed during the hernia surgery. Your only symptom is pain, and so the only treatment is pain treatment.”
When the resident left the room, Ed told me, “The doctor doesn’t understand my problem.”
George was another Stanford patient who had resisted treatment based on a misunderstanding about the nature of pain. Ten years earlier, he told the resident, he had broken his neck in a recreational game of football. Although he had been lucky to escape paralysis, he suffered from chronic neck pain, which interfered with his concentration in his job as an engineer. Taking opioids made him feel fuzzy. He was considering quitting his job and going on disability. The resident told him to stay in his job, explaining that “studies show that people’s pain gets worse, not better, when pain causes them to quit their jobs.” The resident suggested adding to his drug regime an antidepressant, Cymbalta—the first drug specifically approved to treat a type of neuropathic pain (diabetic peripheral neuropathy).
“I’m not depressed—I’m in fucking pain,” George said. “It’s normal to be depressed when you’re in fucking pain. What should I be doing? Partying?”
“You won’t be taking the antidepressants for your mood, but for their analgesic effect,” the resident countered.
George seemed skeptical. When the resident left the room, I asked if it would make a difference to him to know that there is some evidence that antidepressants mitigate pain in rats as well as humans.
“Rats!” he said, sounding impressed. When the resident came back, he asked for a prescription. It had not been enough for him to be told that antidepressants effectively mitigate pain in humans, because he believed they worked in the wrong way. But to work for a rat—that was really working.
WHEN PAINKILLERS CREATE PAIN
If only the answer to pain treatment were as simple as prescribing opioids for all patients—removing the social biases that prevent physicians from prescribing to certain groups, the myths that have led to bad public policy concerning them, and the taboos that prevent patients from demanding them. But in truth, opioids are overprescribed as well as underprescribed, and in the course of my research I observed patients who were helped and patients who were harmed by them.
There is no simple formula to determine who is appropriate for chronic opioid therapy. Rather, the drugs have to be carefully scrutinized to see the role they play over time in the complex course of an individual’s life. The standard medical guideline for chronic opioid therapy is to evaluate not whether the drug reduces a patient’s pain but whether it makes the person more functional. Thus opioid therapy is considered inappropriate for someone who says her pain has improved, but who sits around all day in a daze, while the therapy is considered successful if it enables her to return to work. The degree of relief the drugs bring to each individual has to be balanced against the adversity of the side effects.
Many of the patients I observed in pain clinics were in such agony that there was no issue of whether the drugs would interfere with their normal lives, because they no longer had normal lives. But what about people who are not in such desperate straits?
“If a house is on fire, you have to douse it even if it ruins the furniture,” said Ari, a thirty-seven-year-old Israeli artist and professor in Chicago. “But what if your pain is not a fire, and you don’t want to ruin your life to treat it?”
Seven years earlier, Ari had begun taking methadone because he decided, “My life is not good and I need to make some fundamental change. I just can’t do it with the pain.” Ari had been in treatment for depression since he was seventeen. Curiously, his emotional distress had always been accompanied by unexplained physical pain. When he tried to describe his “dis-ease” to his psychiatrist, he said he felt as if his “skin were so sensitive that the air hurt.” The doctor emphatically assured him that his pain was a manifestation of his emotional blocks and would resolve naturally when he broke through.
By his early thirties, though, he felt he had accomplished many of the goals of psychotherapy, but the pain remained. “I began to say to myself, Fuck. I’ve done so much work in therapy, and I’ve made so much progress, but no matter whether I’m depressed or engaged, whether I’m frustrated and alone, or in bed with a woman I desire—whatever—I still feel like shit,” he said. “I was more and more aware of the discomfort as embodied—as physical, as concrete.
“Pain is this huge presence. You try to ignore it, but it’s always there, tearing you away from the moment,” he added, his expression darkening at the memory. He has large, lucid, hazel eyes, close-cropped dark hair, a beard so short it might be carelessness at shaving, and the kind of tall, lanky body that causes his pants to slip from his hips as he stands. He is skittish about making eye contact, often looking away distractedly or fiddling with his iPhone.
He consulted with a neurologist who diagnosed him with migraine headaches and also with fibromyalgia, based on his diffuse muscular pain, tiredness, and depression. The neurologist prescribed methadone. Although methadone is supposed to be taken in a steady dose, perhaps because he resented his dependence on it, Ari took it haphazardly.
“Methadone really changed the way I thought about mind-body stuff,” he said. “I would start to have classic depressive thoughts—like my life is terrible—with no awareness that they were coming from my physical state. Then I’d realize I was two or three hours behind in taking my pill, and my body felt like shit.” Within twenty minutes of taking a 2.5 mg pill, he would feel pain’s grip loosen and his body and mood unclench.
At first he found it “revelatory” to be in the world again without pain. He would go to a party and be struck that he could fully engage in conversations. But after six years on methadone, he began to reevaluate. “I realized I had lost access to parts of myself that were valuable to me. Opiates wrap a warm blanket around you when you want to be sheltered from the elements. When does encountering those elements become necessary?” Coddled in a pleasant, fuzzy, pain-free haze, he felt he could not become the artist he hoped to be. He also began to wonder if the drug was contributing to his clinical depression and sense of constant exhaustion. (It probably was. Opioids can cause depression. They also interfere with the architecture of sleep, making it less restful.) But because his body had become accustomed to the drugs, when he finally stopped taking them, he was tormented by insomnia that was still troubling him a year later, at the time we spoke.
Ongoing opioid therapy is usually resorted to only when the more benevolent options have failed. But Ari had never systematically tried the mainline treatments for either migraines or fibromyalgia. Fibromyalgia is characterized by distributed “tender points”—muscle knots that radiate pain when touched and can be treated by trigger-point injections (in which dry needles or ones containing local anesthetic or a steroid are inserted into muscle knots in order to get the spasms to release). He had not tried daily aerobic exercise, or even a simple but effective treatment of taking two twenty-minute hot showers a day and stretching under the running water.
“My doctor never suggested any of these things,�
� Ari said. When I asked why he—an intellectual, a college professor—did not take charge of his medical care, even to the extent of researching the side effects of methadone, he paused and gazed off into the distance.
“My energies have been split between these radically different types of healing and modes of addressing human trouble,” he said. At times he was convinced that his pain was simply a manifestation of his inner troubles, “a basic discomfort in the world” that he had tried to treat with a multitude of approaches: the traditional talk therapy approach, the psychopharmaceutical approach, the approach of meditation and mindfulness, the approach of acupuncture/chiropractic/bodywork and “releasing energy,” the approach of trying to find greater satisfaction in work and love, etc., etc.
“I have a problem with faith with respect to Western medicine,” he said dolefully. “I alternate between ‘fuck those people’ and ‘okay, I need help.’ Perhaps if I had more faith, the application of effort would yield benefit, I would put in more, and it would work better and I would be healthier . . . Do you believe in medicine?” he asked abruptly.
“I’m trying,” I decided.
Ari is unusually attuned to his psychological state, so he was able to see that although the drug had initially helped him, it came to impede his life. But many people are unaware of the damage narcotics cause to their lives.
Marc—the sixty-eight-year-old owner of a horse farm in Virginia—suffered from scorching pain in his legs and feet for eleven years. It was diagnosed as an idiopathic peripheral neuropathy—a diagnosis that means simply “a pathology of the nerves of no known origin.” He did not understand that sensory and motor nerves are different and that a pain problem like neuropathy is a sensory nerve problem that does not affect motor function, so he was haunted by fear that pain was damaging his legs and he would become crippled or even paralyzed, like Christopher Reeve. He began taking OxyContin. He noticed that he felt more energetic when he took OxyContin, which seemed to confirm his hypothesis that it was the pain that was weakening him (rather than the simple fact that—as the Greek warriors who took opium before battles knew—the drug can be stimulating).
The Pain Chronicles Page 22
