The Pain Chronicles (24 page)

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.

1. Patient’s belief about cause of pain (cancer, muscular strain, etc.)
   
2. Meaning of pain from patient’s perspective (association of pain with ongoing tissue damage, sinister ideas of pathology)
   
3. Impact of pain from patient’s perspective (has it disrupted their social, vocational, recreational activities?)
   
4. Patient’s goals (to be happier, to be less depressed, to go back to work or school)
   
5. 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 ongoing 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 drug also made him disinhibited—impulsive and loopy. He was a self-made man, driven and disciplined, and with the disappearance of those qualities, so went the life he had constructed. He wrecked Lexuses. He quarreled with people and was unable to recall the quarrels. He abruptly abandoned his new wife, with whom he had been very happy, rushing through divorce proceedings, and then he just as abruptly reversed course to reunite with her.

He switched to methadone (which many pain specialists regard as more effective for neuropathic pain), but it had the same psychological effects. “I lost friends, relationships, business opportunities—I lost ten years of my life,” he said. But like many people, he had had such searing experiences with pain that he had developed a horror of it and believed that his pain had to be completely medicated away, regardless of the damage to his life.

After he had had pain for more than a decade, he had a surgical procedure on his heart called a cardiac ablation. While he was in the hospital recovering from complications, he realized his pain had changed. He was accustomed to being aware of the precise moment in each day that his medication wore off and he needed another pill. But this time, that moment failed to arrive—he found he was able to reduce from eight methadone doses a day to two to alleviate the lingering discomfort. “Just as mysteriously as it came, it mysteriously went away,” he said with wonder. He felt as if he had woken from a dream and returned to his former self. If only his decade could be returned to him!

What was the connection between the heart procedure and his leg pain? A cardiac ablation attempts to cure abnormal heart rhythms by destroying the section of tissue causing a signal in the heart muscle to misfire. Had the procedure somehow reset his nervous system as well? Marc asked his doctors for an explanation, but they had none.

It was as the Righteous Sufferer said:

My illness was quickly over, [my fetters] were broken . . .
The relentless ghost . . . returned [to] its dwelling.

Many people are unable to go off opioids, because their nervous systems are accustomed to the drugs. As soon as they try to reduce their dose, they feel terrible “rebound” pain (which they do not understand is actually being caused by the drug and which they misinterpret as a sign that their underlying chronic pain is unendurable). For others, though, simply taking opioids causes neurological changes over time that worsen pain.

Jose, a building superintendent in his early sixties, had come for a consultation because his pain had steadily worsened. The year before, he had injured his back while installing an air conditioner. He went to see his primary care physician, who gave him Percocet (oxycodone with acetaminophen) and then, when that ceased to control his pain, OxyContin. But the pain—which had been localized at the base of his spine—began to spread until his entire torso was affected. The doctor escalated the dose; the pain escalated in turn. The doctor ratcheted up the dose once more, to no avail, and finally referred him to the pain specialist he was seeing that day.

There is increasing evidence of a long-suspected condition known as
opioid-induced hyperalgesia
in which some patients (and animals in laboratory studies) on chronic opioids become dramatically more sensitive to painful stimuli (hyperalgesia) or experience ordinary stimuli as painful (allodynia). This opioid-induced enhanced pain sensitivity appears to be distinct from patients’ original pain problems; it is often located in other parts of their bodies and has different qualities. In short, for these patients, opioids enhance the same kind of pathological pain sensitivity that is at the root of much chronic pain.