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IS RELIEF RIGHT AROUND THE CORNER
FOR THE C.P. SUFFERER?





It took David Bogan a decade to build a good life and only a few seconds to have it destroyed. A financial adviser in Deptford, N.J., Bogan owned a sailboat, a Porsche, and his own home. But one morning in 1995, as he was driving to his mother's memorial service, a car plowed into him from behind and changed all that. A back injury from the accident led to surgery. He woke from the anesthesia with the sensation that his right leg was burning up.

The face of Bogan, now 35, bears the marks of two years of constant pain from nerve damage in his back. "I can't shower because the water feels like molten lava," he says. "Every time someone turns on a ceiling fan, it feels like razor blades are cutting through my legs." He has been to 20 doctors in search of relief. He has drained his savings and sold his possessions to pay medical bills, and his friends, weary of trying to coax him out to dinner or a movie, are gone.

Last December, when he began fantasizing about jumping off the Benjamin Franklin Bridge over the Delaware River, Bogan checked himself into Mensana Clinic, near Baltimore, which specializes in diagnosing and treating pain. By night, he watches old movies to distract himself. By day, he fights off suicidal thoughts as his current doctor searches for ways to stop the pain. Bogan says, "I'm dying."

To his doctor, Nelson Hendler, treating a patient like Bogan is humbling. Bogan is intelligent, articulate, profoundly depressed, and prepared to kill himself if no one can release him from his suffering. In the eyes of right-to-die proponents, cases like Bogan's serve as powerful arguments for legalizing physician-assisted suicide.

Indeed, pain is one of the principal reasons the sick ask for their doctors' help in dying. And the fear of an agonizing death underlies the support of more than 50 percent of Americans for legalizing physician-assisted suicide. Pain, says Dr. Mitchell Max, director of the Pain Research Clinic at the National Institute of Dental Research, "is the reason Jack Kevorkian has been so successful."

Pain specialists like Max might agree that legalized suicide is the answer--except that they know better. The best antidote to Kevorkian's appeal, in their opinion, is better treatment for pain. And that treatment already is available. Medicine at this very moment has the means to relieve the agonies of the majority of dying patients. It could ameliorate the suffering of many people enchained by chronic pain. Even more effective treatments are on the way. Scientists have traced pain's path from the site of disease and injury to the brain. This knowledge is beginning to yield experimental drugs that eventually will relieve suffering even better than current therapies, with fewer side effects.

What is lacking is not the way to treat pain effectively but the will to do it. For a quarter of a century, pain specialists have been warning with increasing stridency that pain is undertreated in America. But a wide array of social forces continue to thwart efforts to improve treatment. Narcotics are the most powerful painkillers available, but doctors are afraid to prescribe them out of fear they will be prosecuted by overzealous law enforcers, or that they will turn their patients into addicts. Patients, too, are leary of the drugs. And living with pain in stoic silence still is seen as a sign of moral strength, while taking drugs to relieve it is often viewed as weak or evil. "We are pharmacological Calvinists," says Dr. Steven Hyman, director of the National Institute of Mental Health.

Staggering cost. Thirty-four million people in this country suffer from chronic pain. Each year, millions of people seek relief at hospitals or pain clinics. The cost to the nation is staggering. Back pain, migraines, and arthritis alone rack up medical charges amounting to $40 billion annually. And pain results in one quarter of all sick days taken, or 50 million in lost workdays a year.

The biggest obstacle to patients receiving adequate treatment, however, may not be cost, but ignorance. "The techniques for pain relief aren't particularly sophisticated," says Dr. Ira Byock, a pain specialist and author of Dying Well (Riverhead Books, 1997). But doctors don't know much about them. Only a fraction of medical residency programs require a course in pain management. Even fewer teach palliative medicine, which involves caring for the pain, psychological distress, and fears of dying patients and their families. Consequently, when most doctors begin practicing medicine, pain is not even in their awareness. A recent study found that half of hospital patients who were in substantial pain were never even asked by their doctors and nurses how much they hurt.

After an experimental treatment for melanoma, says Anita Semjen, of Cabin John, Md., the burning pain in her right foot became unbearable. "My foot was dark red and swollen, and my thigh was 30 inches around." Yet, her doctors offered few painkillers at first. "They thought I was overreacting," she says. According to recent surveys, the majority of AIDS patients endure severe pain--that is, pain that ranks above an 8 on a scale of 0 to 10, with 10 being "get me the gun" agony, as one doctor put it. More than half the AIDS patients who rated their pain as severe were prescribed drugs that experts consider barely adequate for moderate pain, according to one 1996 survey. A quarter of them were given no pain medication at all.

Many people suffer longer than necessary because the source of their pain has never been properly diagnosed, and if doctors don't know the cause of the pain, they can't treat it. In two studies involving 180 patients in chronic pain, Hendler found that about half were diagnosed incorrectly. Many, he said, were told that they had "sprained" backs, a diagnosis that Hendler says is "garbage. You can't have a [back] sprain that lasts five years."

Patients themselves contribute to their own misery by suffering in silence, rather than complaining. "A patient says, `I feel better.' But when you ask why they're not working, they say, `I hurt too much,'" says Dr. John Loeser, director of the Multidisciplinary Pain Center at the University of Washington, in Seattle. In a recent survey, many AIDS patients said they didn't tell the doctor about their pain because they didn't want to be a burden. Others were afraid of being labeled as "bad" or troublesome patients.

Safe and effective. The conviction that pain should be endured without complaint, and without resorting to the "crutch" of drugs, helps explain the reluctance of both doctors and patients to use narcotics, even though they are potent, safe, and effective weapons against pain. Also known as opioids because they originally derived from the opium poppy, narcotics like morphine, methadone, and codeine are routinely given to patients in acute, temporary pain--after a car wreck or major surgery, for example. They can blunt even the most savage pain in 90 to 95 percent of terminal cancer patients, according to a decade of work by pain specialists Drs. Kathleen Foley and Russell Portenoy of Memorial Sloan-Kettering Cancer Research Center.

Morphine is the only drug that makes cancer bearable for Lisa Steinberg, a 41-year-old Bethesda, Md., podiatrist who has survived long beyond the nine months her surgeon predicted when she was diagnosed with late-stage breast cancer in 1993. Unable to walk, and in excruciating pain from tumors that had spread to her pelvic bones, Steinberg had a morphine pump implanted in her abdomen last August. The device, called an intrathecal pump, is about the size and shape of a hockey puck. It delivers a slow, steady stream of morphine directly into her spinal column, allowing Steinberg to walk again and to resume her life.

Yet many patients balk at using narcotics, even when pain is severe. "Patients are terrified of these drugs," says Portenoy. Some worry that taking narcotics early in the course of their illness will leave them with nothing stronger when the pain gets really bad. But for most people, there is no upper limit to narcotics' capacity to dull pain: As the pain mounts, so can the dose. Others fret that narcotics will cloud their minds or leave them completely sedated. One Washington, D.C., man, who did not wish his name to be used, saw his mother suffer horribly from abdominal cancer because she resisted taking the morphine prescribed by her oncologist. "She was afraid she would be knocked out by the drugs," the man says. Yet in many cases, a skillful doctor can combine opioids with other drugs and analgesics to dull the pain without dulling the mind. It is usually at the very end that high doses are needed and the patient is kept sedated much of the time.

Doctors have their own concerns about prescribing narcotics. State and federal drug enforcement agencies routinely monitor narcotic prescriptions, and they arrest more than 200 doctors and pharmacists a year on charges of giving them out too freely (box). To avoid notice, most doctors refuse to prescribe refills; others give their patients doses that are too low to alleviate the pain.

In recent years, more physicians have become willing to employ narcotics at the end of life, though most are still not very skilled at doing so. But few doctors will even consider using the drugs to treat people who live in chronic pain, that is, pain that is not caused by cancer and lasts longer than a few months. A recent survey of 204 people with chronic pain found that most had sought help from an average of 10 physicians, yet only half had received drugs that reduced their agony. Chronic-pain patients who receive workers' compensation find the least compassion from healers. Suspecting them of being malingerers out for an easy buck, many hospitals and pain clinics turn such patients away at the door.

Millions of addicts? No one disputes that some cases of chronic pain are very difficult to treat. But pain specialists who, like Foley and Portenoy, even dare to suggest that narcotics provide a merciful and safe relief for chronic pain, meet with vehement opposition. The biggest objection, raised frequently by opponents, is that such patients may use narcotics for years, raising the specter of millions of addicts.

But at the heart of this debate is confusion about what constitutes addiction and what is simply physical dependence. Most people who take morphine for more than a few days become physically dependent, suffering temporary withdrawal symptoms--nausea, muscle cramps, chills--if they stop taking it abruptly, without tapering the dose. But few exhibit the classic signs of addiction: a compulsive craving for the drug's euphoric or calming effects, and continued abuse of the drug even when to do so is obviously self-destructive.

In three studies involving nearly 25,000 cancer patients, Portenoy found that only seven became addicted to the narcotics they were taking. In part, this is because new formulations of the drugs, such as oral morphine, or narcotics delivered through a skin patch, are absorbed into the bloodstream slowly and consequently don't provide the heady rush that many addicts crave. Other studies suggest that morphine is "eaten up" by the bodies of people who are in pain, so that there is literally none left over to make them high. "If we called this drug by another name, if morphine didn't have a stigma, we wouldn't be fighting about it," says Foley.



On To Part 2




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