By Melissa Hendricks
Patricia Townson’s spine is on fire. A knife is piercing her neck. Pain has been her constant companion for almost four years since two car accidents ruptured disks in her neck. The 35-year-old lost her retail sales job and now spends her days and nights semi-reclined on a blue couch in her upstate New York home.
A bottle of maroon-colored pills that sits on a table next to the couch offers some relief. Townson has tried dozens of drugs, and this timed-release morphine is the only one that can even touch her pain. Her prescription is for nine pills per day, but she allows herself just five. That’s because she does not know when she will find a local physician who will renew the prescription; several have already refused. Her doctors have told her that she will become addicted to the opiate. They have labeled her a “junkie” and referred her to detox, even though cutting off her medication left her in unbearable agony. Being told she is an addict, she says, “is as bad as the pain I’m feeling.”
Johns Hopkins neurosurgeon James Campbell has heard many stories like Patricia Townson’s. As director of the Johns Hopkins Blaustein Pain Treatment Center, and past president of the American Pain Society, he has treated hundreds of patients who suffer from chronic pain–unremitting, often incurable agony that persists for weeks, months, or even years. Frequently, he treats them with a “therapeutic trial” of morphine or other natural or synthetic morphine-like drugs, known collectively as the opioids.
“Based on my experience, opioids are more effective than any single class of drugs for chronic pain,” the neurosurgeon says. “We have doctors, lawyers, professional people who are taking morphine or methadone [a synthetic opioid] for chronic pain and are doing fine.” Opioids do not damage the liver or kidneys, as certain anti-inflammatory agents can; or lead to ulcers, the way aspirin can; or induce Parkinson’s-like shakiness, the way schizophrenia medications can. All these substances have been used for chronic pain.
But Campbell and several other Hopkins specialists who prescribe opioids for chronic pain often run up against obstacles. They say that many doctors who are afraid to prescribe the drugs are clinging to outdated conventions–such as the belief that opioids inevitably cause addiction or intolerable side effects. Others who do see the benefits of opioid medications still avoid prescribing them because they fear that state medical boards will take away their licenses, as has occurred recently in a handful of high-profile cases.
“Opioids are among the most stigmatized medicines,” says neurologist Russell Portenoy, chairman of pain medicine and palliative care at Beth Israel Medical Center in New York and president of the American Pain Society. “There is an enormous number of myths and misconceptions that physicians and the public perceive.”
As a consequence, Campbell and several other Hopkins pain specialists now routinely spend time talking with referring physicians to correct mistaken notions and explain the state of the art for using opioids for chronic pain.
“We’re trying to mount education for the [medical] community at large. A lot of education is needed in the primary care setting,” says Nathan Rudin, an assistant professor of physical medicine and rehabilitation. “Physicians need to know that if these medications are used properly, prescribing them is as routine as prescribing a blood pressure medicine. It doesn’t need to carry any more of a stigma.”
BUT CAMPBELL AND COLLEAGUES face an uphill battle, as Patricia Townson’s case demonstrates.
After her car accidents, Townson tried chiropracty, electrical stimulation, and a large variety of medications, all futile attempts to relieve her pain. Finally, a pain specialist prescribed morphine. While no cure, the pills gave her enough relief that she was able to visit friends for an hour.
Her troubles continued this past January, however, when she had surgery to remove two disks in her neck. Her surgeon, says Townson, was horrified to find that she was taking morphine, and he forbid her to continue its use.
Townson complied with his recommendation, but after a few days her pain was unbearable. Her husband rushed her to the emergency room in the middle of the night, as she writhed in agony; her misery was no doubt compounded by the effects of morphine withdrawal. “My body was drenched. My clothes were drenched. The pain in my neck was just so severe. I just wanted to die,” she recalls today.
Townson’s doctors told the ER staff that she should be placed in detox, but the detox program refused to admit her. So she was sent home.
In February, Townson’s husband rented a van, made a bed for his wife in the back, and drove her to James Campbell’s office at Hopkins. After examining Townson and studying her medical records, Campbell recommended that she continue taking the morphine medication. He also wrote a letter to her local physician explaining the merits and safe use of the drug. Townson’s physician grudgingly agreed to give her a two-month supply of the drugs with the idea that she would gradually wean herself off of it. The dozen other doctors she’s tried calling have refused to write her a prescription for the medication. “So I’m blackballed,” she says.
Townson is not alone in her pain. According to the National Institute of Neurological Disorders and Stroke, 40 million Americans each year visit a doctor for chronic pain. Headache and back pain top the list of chronic pain conditions. Others include arthritis, endometriosis, temporomandibular joint pain (TMJ), vulvar pain, trigeminal neuralgia, shingles pain, and fibromyalgia. (Cancer patients, of course, also experience chronic pain, and have had to wage their own battle for adequate pain relief. However, the question of using opioids for non-malignant chronic pain is a more recent controversy.) Deciding when pain should be described as chronic is somewhat arbitrary, says Campbell. By and large, patients who rate their pain as a seven or above on a zero-to-10 scale, and whose pain has lasted four to six weeks or more, “start verging on chronic,” he says.
But chronic pain patients present notoriously complex cases because their injury or disease is often compounded by other problems, such as depression and physical disability. Physicians often have a difficult time untangling the web of ailments that can occur with chronic pain. Such pain can endure for a decade or more, and it is not uncommon for patients to seek the help of dozens of doctors, depleting their savings in the process–a pain treatment odyssey that some physicians mistake for the “doctor shopping” of a drug abuser. A recent survey by the American Pain Society, the American Academy of Pain Medicine, and Janssen Pharmaceutica concludes that more than 40 percent of people with chronic pain are not receiving adequate pain relief.
Many of the patients who cannot find or are denied adequate pain control are angry, bitter, and desperate. The tenor of the messages posted electronically on the listserver maintained by a patient support and advocacy group called the American Society for Action on Pain (ASAP) reflects this range of sentiments.
Some patients write that their doctors allot them only one short-acting opioid pill per day. The medication lasts only four hours, leaving them in pain for the other 20 hours.
Other patients were taking methadone, for pain, but were taken off the drug “cold turkey” because hospital staff said they were addicted to the medication. Several patients posted messages in recent months requesting the address of Jack Kevorkian, or debating the ethics of physician-assisted suicide.
ASAP’s founder, Skip Baker, has lived with chronic pain for 20 years. A photographer based in Williamsburg, Virginia, Baker has a rare disease called ankylosing spondylitis. For years, he looked for a physician who could alleviate his pain. He even bought a shotgun and contemplated suicide.
Finally, a doctor diagnosed his condition and put him on morphine. Now almost entirely pain-free, he is trying to help other patients. “My hobby,” he says, “seems to have become getting severe chronic pain patients to doctors willing to control their suffering rather than letting them go to Dr. Kevorkian or take their own lives.”
Baker has also written letters to and testified before state medical boards, and helped organize a march on the Capitol by pain patients to demand better pain management. Many doctors, he says, “are terrified to treat pain for fear of getting prosecuted.” He maintains a “barbaric list” of states where patients have reported the most egregious pain management practices. Many medical boards, says Baker, “assume we’re taking pills to get high.”
MORPHINE IS EXTRACTED from opium, a drug that itself is obtained from the juice of the opium poppy, Papaver somniferum. Physicians in the 19th century freely prescribed opium for pain.
But through a series of federal and state initiatives, physicians throughout this century have been warned to avoid prescribing opioids for fear of the risk of addiction. The War on Drugs has further fueled this fear, says Campbell, ultimately resulting in what he calls “The War on Patients.”
When Campbell was in medical training 20 years ago, many doctors were even opposed to prescribing opioids for terminally ill patients. In general, they worried that opioids would make patients depressed, irritable and withdrawn, impair their thinking, and lead to addiction. Doctors also feared that, over time, patients would develop tolerance to the drugs. While they might first need only 20 milligrams to achieve pain relief, they would soon need 50. Then 80. Then 100. Where would it end? Side effects were also a problem; the opioids were known to cause nausea, constipation, and depressed respiration.
At many pain clinics, pain treatment was synonymous with detox, says Campbell. “We were taught, if you stop the opiates, the patient’s pain will go away.” But the scientific premise for this notion was “fuzzy. It certainly was not rooted in good science,” he says today.
Many doctors would prescribe anything but opioids, says Marco Pappagallo, director of the division of pain medicine in Hopkins’s Department of Neurology. But each alternative medication had its own problems. The list included schizophrenia drugs, which have potentially dangerous side effects and now are thought to have no effect on pain; sedatives such as Valium, which can cause organ damage; or anti-depressants, which are effective pain relievers but have a long list of side effects including drowsiness, constipation, and dry mouth. “There was no science at all, but a mix of biases, prejudices, and a lack of education,” comments Pappagallo.
Sentiment began changing in the 1970s, when oncologists started finding that their cancer patients garnered pain relief from morphine–with little or no risk of addiction.
Drug companies also began developing timed-release morphine preparations that delivered the drug slowly, in contrast to the short-acting spurts of pain relief that wore off within three or four hours and left the patient counting the minutes until the next dose.
Scientists also learned more about how opioids relieve pain. Previously they thought that opioids didn’t really reduce pain– they merely caused a patient to become less aware of the pain through “disassociation.” But then researchers discovered that the body produces its own natural opioids. These bind to special receptors on the neurons that transmit pain signals to the spinal cord. Morphine and morphine-like drugs bind to these same receptors and thereby do diminish pain.
CAMPBELL BEGAN PRESCRIBING OPIOIDS for chronic pain in the early 1980s. His first patient was a night watchman in his 30s who had lost his arm as a result of an injury. The man had experienced excruciating phantom limb pain ever since. He’d had more than a dozen surgeries. Campbell performed another operation, but the man was still in agony. “He was next to suicide,” says Campbell.
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The patient remarked that the methadone he had received to relieve post-operative pain had been very effective. So Campbell decided to see if a long-term prescription of a modest dose of methadone would help. The results were remarkable, says Campbell. The watchman returned to work and continued to take methadone for the next 10 years.
Since then Campbell has treated dozens of chronic pain patients by prescribing long-term courses of methadone, morphine, and other opioids, often with promising results. Many patients have called or written to thank him for easing their pain after everything else that they tried had failed. Pappagallo’s patients tell similar stories.
But Campbell and Pappagallo have also heard from patients who encounter skeptical looks and questions from dubious doctors and pharmacists, or the astonished reactions of relatives who find a methadone bottle in the medicine cabinet.
A few years ago, Roberta Halliday, an energy lawyer struggling with chronic neck pain from degenerative disks, walked into a pharmacy in her Chevy Chase, Maryland, neighborhood to fill a prescription for methadone. While several shoppers looked on, the pharmacist railed at her. She would have to go to a heroin detox clinic, he said. His pharmacy could not fill prescriptions for heroin addicts.
“I was astonished,” says Halliday. “It was embarrassing. My mother was with me and she was horrified.”
CAMPBELL AND PAPPAGALLO POINT OUT that there’s an important distinction between drug dependence, and drug abuse or addiction. Opioid users do become physically dependent on the drugs they take and will suffer withdrawal symptoms if they stop taking them. Morphine withdrawal can include diarrhea, muscle aches, fever, and general flu-like symptoms. Though uncomfortable, these symptoms are not life-threatening.
In contrast, people who are addicted to a substance have a compulsive need to use it. They go to great lengths to get it– even breaking the law, hurting people, or destroying personal relationships.
Several studies of cancer patients and other pain patients have shown that these patients rarely become addicted to their pain medication. As to why that is the case, Pappagallo notes that only a small minority of the general population has a predisposition toward addiction to begin with. Further, adds Campbell, most patients who take opioids do not experience euphoria from their medication, particularly from the timed-release preparations. Patients are not going to go to great lengths to seek a “high,” as the heroin abuser would, because there is none. “You don’t walk a mile to get a nicotine patch,” says Campbell.
Under the supervision of a properly trained physician, even chronic pain patients who have a history of drug or alcohol abuse can take opioids with minimal risk of abuse, says Pappagallo, although he makes these patients abide by a stricter set of rules, such as agreeing to random drug tests.
Experienced physicians learn the red flags that suggest abuse. For instance, a patient will say on several occasions that he lost his medication and needs a new prescription.
What about tolerance? Won’t patients need ever higher doses to get the same amount of relief? Here again, it would appear the risk is not as great as doctors once thought. “Tolerance, or decreasing pain relief with the same dosage over time, has not proven to be a prevalent limitation to long-term opioid use,” concludes a consensus statement issued recently by the American Academy of Pain Medicine and the American Pain Society. The statement continues, “Experience with treating cancer patients has shown that what initially appears to be tolerance is usually progression of the disease.”
Doctors can also minimize the side effects of opioids by titrating the medication, starting with a small dose and increasing it gradually over weeks or months until pain relief is achieved, Pappagallo says. Opioids alone are not the answer to every patient’s pain, he concedes. He has found that combining pain relievers, such as an antidepressant with an opioid, can give some patients pain relief at a lower dosage of each medication.
But there is a wide range of opinion on whether and when opioids should be prescribed–even among Hopkins physicians.
“I find there is a subset of patients who do benefit,” says Rudin, of Hopkins’s Division of Physical Medicine and Rehabilitation. But, unlike Pappagallo, Rudin is reluctant to give opioids to a patient with serious psychological problems or an addiction history. “These medicines can contribute to depression,” he says. “I’d have these people referred to psychological counseling first.”
Rudin recommends trying all other non-surgical medical alternatives before resorting to opioids. “You have to be careful about monitoring these medications,” he says. “If they are improperly used they can have serious side effects. This is a very, very sensitive issue. I’m really still on the fence on how well they work. In a lot of cases we give them to people who shouldn’t have them, and in a lot of cases we [probably] don’t give them to people who should. I think they can be useful tools if you carefully pick your patients. We’re still trying to figure out how to pick those patients.”
Donlin Long, Hopkins neurosurgeon-in-chief, is among those at Hopkins who have serious reservations about widely prescribing opioids for chronic pain.
Long, who directed Hopkins’s inpatient Pain Treatment Center for 15 years, has prescribed mainly short-acting opiates for certain pain patients. But he questions their effectiveness. “I find my patients don’t like the way opioids make them feel,” he says. “It would be wonderful if they turned out to be effective, but my patients take them, and their lack of activity remains exactly the same.”
In a study he conducted a few years ago involving 494 pain patients, volunteers were placed on opioids. When the patients stopped taking the medication, says Long, “none of the patients thought their pain was worse than it had been when they were on the drugs.”
He says he would be willing to prescribe opioids more often if research demonstrated that they give significant pain relief but do not impair cognition and other functions. “The problem is that nobody has done a reasonable study,” he says.
Research now under way at Hopkins may provide some answers. Pappagallo, anesthesiologist Srinivasa Raja, and psychologist Jennifer Haythornthwaite are studying a group of shingles patients who are randomly assigned to take either an opioid, an anti-depressant, or a placebo. The patients rotate through each of the three groups so that by the end of the trial, each patient has received three interventions.
Initial results show that neither opioids nor anti-depressants adversely affect a patient’s attention, concentration, verbal learning, and psychomotor skills. The study is still in progress, Haythornthwaite cautions, but it confirms earlier research that she and her colleague have conducted.
However, she adds, it is also important to note that opioids do not completely eliminate patients’ pain. Indeed, Pappagallo reports that his patients on opioids achieve a 50 to 60 percent decline in pain.
Moreover, Haythornthwaite has found that opioids are not the magic pill for returning patients to a normal life.
She has counseled and evaluated hundreds of chronic pain patients at Hopkins, many of whom are the most severe cases in the chronic pain spectrum. Many have not held jobs or been physically active for a decade or more. Their muscles have atrophied. They are depressed. They are physically or psychologically unable to leave their homes. She has found that opioids give “a slight improvement in function but it is not impressive.”
“If opioids are as good as everybody says,” says Haythornthwaite, “then people should be getting back to work. But I’m not seeing that. We don’t see robust improvements that could be totally attributed to the opioids.”
Truly effective pain management, she says, should be a multidisciplinary affair that includes the option of pain medication, nerve blocks, surgery, physical therapy, and counseling. It should steer patients back into the normal flow of life, in addition to reducing their pain.
Many questions remain about opioid use for chronic pain, say Haythornthwaite and her colleagues. The unknowns include: Which patients benefit from the opioids and which don’t? And how do patients fare who use opioids for a long time, say five or 10 years?
A BUTTON PINNED TO PAPPAGALLO’S bulletin board reads: “Pain: the 5th Vital Sign.” It is from a national campaign to encourage physicians to pay more attention to pain.
The fray over the use of opioids for chronic pain is just one small part of a more fundamental problem–a lack of education about pain and pain management, says Pappagallo.
“Pain is patients’ chief complaint,” he notes. Back pain and headaches account for 60 to 70 percent of visits to physicians. “But when you talk to doctors at academic institutions, pain is not a priority.” Hopkins’s School of Medicine, for example, does not offer a course explicitly in pain management.
There are signs of change. The American Academy of Neurology will soon offer board certification in pain medicine, says Pappagallo, who is chairman of the academy’s section on pain medicine. And an increasing number of state medical boards and organizations are issuing guidelines and policies clarifying the use of opioids and reassuring doctors that they can prescribe opioids for relief of patients’ chronic pain without fearing sanctions (see box on page 33). The Maryland Board of Physician Quality Assurance issued such a policy and guidelines in December 1997.
Such policies may one day be rendered unnecessary. Several promising new pain medications are in development or already starting to find a place on pharmacy shelves. They include new topical opioids; anti-inflammatory agents called cox2 inhibitors that come without the risk of bleeding ulcers common to high doses of regular aspirin; and, farther in the future, gene therapy.
But until these new options become widely applied and available, patients like Patricia Townson will continue to hoard their pain pills, desperately holding onto the tenuous lifeline that connects them to a bearable existence.
Source: Johns Hopkins Magazine, June 1999. Reprinted with permission.