The Pain Chronicles (16 page)

THE PARADOX OF PATIENTS’ SATISFACTION WITH INADEQUATE PAIN MANAGEMENT

The outcome of pain treatment is rarely measured,” commented Dr. Woolf. “The doctor hopes the patient has gotten better, of course, but often as not they simply got discouraged and went away.”

He recalled a surgeon giving a talk about the success of the dorsal column stimulator—an electronic device implanted in the spinal cord on the theory that it interferes with the transmission of pain signals (a treatment I considered for myself). Dr. Woolf found that the surgeon’s impressions were contradicted by one of his residents, who had actually communicated with the patients. The device was a
surgical
success, it turned out (it was properly implanted; the patients didn’t suffer infections or blood clots, etc.). It just didn’t help patients’ pain—or at least not enough to offset the buzzing feeling patients describe as similar to having a bee trapped under their skin. Patients (such as a West Virginian coal miner with back pain whom I met) sometimes elect to have dorsal column stimulators eventually removed, but not necessarily by the same doctor.

Most patients avoid returning to doctors for whom they will represent failure, which would force them to confront not only the physician but also their own anger and disappointment. Fitting this pattern, I never let the orthopedist know I hadn’t had a bicycle accident. Whenever I considered it, I pictured myself starting to yell,
I don’t even own a bicycle
, and perhaps even bursting into tears, and who wants to make a call like that? After Dr. Carr gave her a new protocol, Lee Burke never spoke to the Nice Doctor again, so he was left to assume that she was satisfied with her care and that she no longer consulted him simply because she no longer needed to.

Yet by the time she consulted Dr. Carr, Lee had been under the Nice Doctor’s care for seven years. Why had she stayed so long if she wasn’t improving?

Many studies document that most patients do not get good pain treatment. A 2005 Stanford University survey found that of the chronic pain sufferers who actually went to a doctor, fewer than half received adequate pain treatment, while the American Pain Society found that the same is true of cancer patients. A 2008 survey by researchers at the University of Pennsylvania and the National Cancer Institute found that more than a third of breast cancer patients who reported pain did not use medication to manage it. The primary reason patients gave: their health-care provider did not recommend pain medication. (This reason was followed by fear of addiction or the inability to pay.)

Why don’t patients demand adequate pain treatment? A 2002 study by the U.S. Cancer Pain Relief Committee explored a more confounding barrier, which it termed “the paradox of patients’ satisfaction with inadequate pain management.” Although 43 percent of patients said that they had experienced moderate or severe pain in the previous three days, only 14 percent said they were dissatisfied with their pain management, and 77 percent said they were satisfied or very satisfied with how their pain was managed overall! The study’s puzzling observation: “Recent pain intensity was not a significant predictor of satisfaction with pain management provided by the doctor.”

Patients expressed resignation to their pain (commenting that they were “not one to take pills,” “can stand pain,” “hate to bother people,” “have to live with it,” “getting used to pain,” “hurt a long time”). Many believed their doctor had done his or her best (“doctors have done all they can”). “Patients also expressed acceptance of their pain because it was chronic, implicitly endorsing the inability of doctors to manage this type of pain, through their maximally positive ratings,” the authors observed. Willingness to take opioids greatly increased if the doctor or nurse explained that—when properly used—they were not addictive.

It had previously been demonstrated that by far the single most important factor in the successful treatment of chronic pain is confidence and trust in the provider. This study found that a primary care doctor or nurse
telling
the patient that alleviating pain was an important goal predicted roughly
as great a satisfaction as the patient actually sustaining relief within the past year.
In short, “inadequate pain management in the context of a caring or otherwise good relationship with the doctor can lead to inappropriately low patient expectations concerning pain relief,” the study concluded—a conclusion echoed by the experience of Lee Burke. She said she never questioned the Nice Doctor’s care because he seemed so empathetic.

When Lee’s ex-husband—a malpractice lawyer—saw how Lee improved after Dr. Carr’s treatment, he suggested that they sue the Nice Doctor. “But I would never do that,” she said. “There were times I was in tears from the pain and he was in tears with me.”

The drugs that ended up helping Lee—Neurontin, Darvocet, and a muscle relaxant—are extremely common. Apart from opioids, Neurontin is one of the most widely used drugs to treat pain, popular not only with pain specialists but also with primary care physicians because it has no risk of addiction. What prevented the Nice Doctor from thinking of these options?

My heart beat faster as I dialed the Nice Doctor’s number.

I agreed with Lee that he was nice. He spoke about his concern for Lee and his frustration at the intractability of her condition. He also advocated the importance of a mechanistic understanding of pain and asked whether I knew the work of his Harvard colleague, Clifford Woolf. Contrary to Dr. Woolf’s findings, however, the Nice Doctor believed that the pain of all the patients who had the type of tumor that Lee had should be similar, and in his experience most patients did, in fact, “respond to simpler, more holistic therapies.” He was convinced that Lee suffered from tension headaches because she had such severe muscle contractions that even a light touch could make her wince.

Although Dr. Woolf and others had stressed that most doctors do not take account of neuropathic pain, it struck me as telling that even a pain doctor—confronted with a case in which there was a clear-cut cause for suspecting nerve injury—could still miss the diagnosis of neuropathic pain by focusing on secondary symptoms, such as muscle contractions, instead.

Because the Nice Doctor hadn’t thought of Lee’s pain as neuropathic, he had not considered Neurontin, and he feared opioids. “We don’t always do patients a favor putting them on
high-dose narcotics
,” he chided, assuming the particular intonations people do when borrowing language from the war on drugs. “If someone’s dying of cancer, there’s no drug we’re afraid to prescribe. But when a patient is depressed or anxious, you’re leery about narcotics,” he said. “With Lee, I guess I’d have to say I was being cautious.”

His voice changed—softened and quieted—as he got to the real point: “I was afraid.”

Lee recalled that whenever the Nice Doctor sent her to other specialists, she would break down during the appointments in pain and frustration. “They all just figured I was a basket case,” she said. “And I was. I was a basket case.”

A 2004 study at the University of Milan School of Medicine asked 151 doctors to “tell us about an episode during your professional experience in which you found yourself in difficulty whilst confronting a patient who was in pain.” The paper identified three modes of discourse in which the doctors talked about their patients: the biological perspective, the professional perspective, and the personal perspective. Many of the doctors did not talk exclusively in any of these modes, but fluctuated among them in discussing different patients or even in discussing one patient.

The biological perspective involves a “depersonalization” of pain—splitting off the disease from the suffering person. The doctor who assumes the biological perspective views the patient through the prism of pathophysiology. Yet such a mode collapsed every time that a simple biological model failed to explain a patient’s pain—as it frequently did. In the personal perspective, the doctor becomes deeply identified with the suffering of the patient. But this perspective has risks: he may idealize her and turn her into a “hero patient.” And when the doctor fails to be a hero himself by curing her pain, he may become a “hurt healer” and defensively distance himself from her, becoming upset and overwhelmed and even blaming her for failing to get better. Only the third perspective—the professional perspective—is able to reconcile science with compassion so that a patient’s pain is seen as a biological phenomenon, but one that takes place in the context of the person’s life, of which biology is only a part.

The Nice Doctor seemed to empathize with Lee, but in an excessively personal way that clouded, rather than clarified, his clinical judgment. He became overly focused on her psychic distress, trying to explain her pain through that prism: “Lee’s pain seemed to be better at the times she was happier, was forming new relationships or helping others,” he said. “And even though she was motivated and worked hard on stress reduction, the fact remains, she
is
a tense person.”

THE SCAR HYPOTHESIS

Was anxiety, depression, or any other psychic problem the cause of Lee’s pain? Or was her pain making her miserable?

It is generally estimated that between one-third and one-half of people who suffer from chronic pain also have a major depressive disorder. Conversely, pain is a frequent complaint in the psychiatric clinic: a Stanford University study of major depression found that almost half of those who are depressed also suffer from chronic pain. But the relationship between pain and depression turns out not to be one of those pointless chicken-and-egg questions.

A review study led by Dr. David A. Fishbain at the Leonard M. Miller School of Medicine at the University of Miami examined eighty-three studies that explored the relationship between the quality and extent of pain and the depths of depression among patients suffering from a variety of painful conditions (headache, spinal cord injury, cancer, angina, back pain, and so forth).

The majority of studies that tested what he calls
the antecedent hypothesis
—the idea that depression preceded pain—found it to be untrue, while all of the studies testing
the consequence hypothesis
, that depression follows pain, found it to be true. Moreover, the more severe the pain, the greater the depression. For patients who suffered from intermittent pain, the periods of depression echoed the periods of pain. The same was true of suicide: thoughts of suicide, suicide attempts, and completed suicides occurred far more frequently in those suffering from pain than in the general population and increased directly in proportion to the severity of pain.

Naturally, we might say: pain is depressing, disheartening, dispiriting. Who needs a study to understand that? But pain and depression turn out to be far more profoundly linked than is commonly understood: they are biologically entwined diseases with a common pathophysiology stemming from a common genetic vulnerability.

Chronic pain sufferers are more likely to have suffered from a depressive episode in the past and to respond to the onset of pain with a recurrence of depression. Dr. Fishbain analyzed studies that examined what he calls
the scar hypothesis
: that a genetic predisposition to recurrent depression is correlated with one for chronic pain. Depression is known to have a strong genetic component: sufferers frequently have family members or relatives who are or have been sufferers as well. And pain and depression are known to involve overlapping neural circuitry. Brain imaging scans reveal similar disturbances in brain chemistry in both chronic pain and depression.

There is increasing evidence that both conditions involve abnormalities in the neurotransmitters serotonin and norepinephrine, which play a role not only in mood disorders but in the gate-control mechanisms of pain. Increasing serotonin in rats engenders pain relief, while depleting serotonin increases their pain responses to electric shock. Pain decreases available serotonin (by increasing the rate at which it is reabsorbed), which weakens the pain-modulation system, creates more pain, and creates depression. Thus, we can see that anxiety and depression are not merely cognitive or affective responses to pain;
they are physiologic consequences of it.

Pain causes depression just as reliably as difficulty breathing triggers panic. Thus the Nice Doctor’s decision not to prescribe opioids for Leigh because she seemed “tense” makes no more sense than “not rescuing someone who is drowning because they’re having a panic attack!” exclaimed Dr. William Breitbart, chief of the psychiatry service at Memorial Sloan-Kettering Cancer Center. “Serotonin facilitates descending analgesia” (the brain’s ability to modulate pain in the spinal cord by stopping incoming pain messages), “and chronic pain uses up serotonin, like a car running out of gas. If the pain persists long enough, everybody runs out of gas.”

Stressful events naturally enhance pain in those with a biological predisposition to it. “If we started putting sugar in the water, it would affect the diabetics first—pain patients respond to stress with increased pain,” explained Dr. Scott Fishman, who trained as a psychiatrist as well as a pain specialist. But to make stress reduction a primary strategy for pain treatment is like counseling a drowning person to relax.

“Dr. Carr finally threw me a rope,” Lee said.