Chronic pain is often left untreated
Del. patients face many obstacles
By LAURA UNGAR
Chronic pain transformed Bernie Carr from an active senior who liked to walk, boat and water-ski into a man who could barely get out of bed in the morning.
And like millions of others, Carr found relief only after scores of doctor visits and a bevy of medications.
"I went 15 years in agony," said the 68-year-old Lewes resident, whose pain resulted from arthritis, knee replacements and heart bypass surgery. "Pain was like my middle name."
Health experts estimate that at least 50 million Americans suffer from chronic pain, making it one of the nation's biggest health problems.
Doctors and researchers agree that pain is vastly under-treated. A survey released this month by Research America, a nonprofit health education and advocacy group, showed that 66 percent of sufferers expected to live with their pain for the rest of their lives.
Delaware patients face particular obstacles. Last week, the Pain and Policy Studies Group at the University of Wisconsin gave Delaware a D-plus for its state policies affecting pain control.
Researchers said Delaware is one of only seven states without a pain policy to guide doctors about the correct use of narcotic painkillers - often the most effective treatment for severe, chronic pain.
Across the nation, many doctors fear being disciplined for prescribing narcotic drugs. Doctors and patients also worry that these drugs can lead to addiction and misuse, a risk some say is real and others say is overblown.
Efforts to relieve pain also are stymied by a lack of doctor education on pain, a medical system that does not encourage comprehensive pain care, and a failure by some doctors to take seriously enough a problem that cannot be seen on a CAT scan or an X-ray, according to some doctors, patients and health-care experts. Such obstacles emerged in a country where a stoic, grin-and-bear-it attitude about pain has persisted for centuries. The Research America survey found that 42 percent of Americans view pain as more of a weakness than a misfortune.
"We have to change our whole thinking about pain," said Margaretta Dorey, a nurse who directs the Delaware Pain Initiative, an advocacy organization. "Even as children, we are told not to focus on our pain or discomfort, to get up and continue our lives."
For many chronic pain sufferers, that is impossible. Pain - caused by everything from injuries to arthritis to cancer - can disrupt relationships, cause depression and require years of medication and physical therapy. And the later it is treated, doctors said, the more likely it will continue to define a sufferer's life.
"People aren't sleeping. They aren't able to work productively," said Lennie Duensing, communications and outreach director for the Baltimore-based American Pain Foundation. "It affects everything from putting your clothes on to having sex."
Narcotics are a concern
Concerns about narcotics are some of the most significant barriers to good pain care, doctors and advocates said.
"There are still a number of doctors in the community who are very reluctant about prescribing narcotics long-term," said Dr. Gabe Somori of the Coastal Pain Care Center in Lewes.
Primary care doctors, who handle the majority of ongoing pain management, generally prefer more innocuous drugs and work up slowly to narcotics if necessary, said Dr. Joseph A. Lieberman, a primary care physician for Christiana Care Health System and professor of family medicine at Jefferson Medical College in Philadelphia. Some do not want to deal with the issue at all.
There are valid reasons for such concerns, Lieberman said.
"Doctors do not want to run afoul of the regulators and bureaucrats," he said. "The state pays a fair amount of attention to what's being prescribed in terms of these drugs."
That's because narcotics can be addictive, said David Dryden, director of the state Office of Narcotics and Dangerous Drugs. He pointed to the painkiller OxyContin, a synthetic form of morphine that has been blamed for more than 100 overdose deaths nationwide. In the year ending June 30, Dryden said, there were 276 investigations in Delaware of possible fraud, forgery or other criminal activity involving legally prescribed drugs.
Dryden said some junkies like OxyContin because it is made from the same plant as heroin and, as a pharmaceutical, it is assured to be high-grade. For this reason, OxyContin sometimes makes its way to drug addicts.
"There's a ton of drug diversion out there," Dryden said.
But several doctors and patients said this concern that prescription drugs will be misused is excessive and in some cases irrational.
"The fear is national, that's for sure," said Judith Paice, a research professor of medicine at Northwestern University in Illinois. "It's pretty pervasive."
Although patients become physically dependent on the drugs, doctors said, they do not generally become "addicted" in the sense that they experience cravings and loss of control.
Patricia Collison, 47, of Brandywine Hundred, said she had been taking OxyContin and Percoset for severe lower back pain after a lifetime of riding horses led to degenerative disc disease and two failed spinal fusion surgeries. Then, the pain clinic she was going to, run by Christiana Care, closed in May.
The former horse trainer said some doctors refused to take her as a patient because they did not want to get involved with someone receiving relatively high doses of narcotic drugs - even though she was not addicted.
"I don't get a high or a buzz when I take my pills," said Collison, who eventually found a specialist at St. Francis Hospital's pain center. "It just makes me feel normal."
Ivan Loder of Wilmington, who experienced severe pain stemming from bladder cancer and ensuing treatments, said morphine was the only drug that truly helped him. He and his wife, Gaynell, said they wish doctors had prescribed it earlier, at higher doses than they initially did. The pain was excruciating, he said, making him feel "out of touch with life."
"If things had been done quicker in the beginning, that would've been better than to have it drag out all this time," said Loder, 55. "I don't think addiction is even remotely an issue, certainly not for me."
Carr echoed those sentiments. Over the years, his various doctors suggested over-the-counter medications such as Excedrin, which did nothing to relieve his pain. Finally, he went to a pain specialist who prescribed narcotic painkillers and now monitors Carr's progress carefully.
"Before that, nobody seemed to know what to do with me," Carr said. "I had a lot of suffering for a lot of years for no good reason."
Most states regulate dosage
Unlike Delaware, most states have guidelines about the correct prescription of narcotic, or opioid, drugs - regulations that some national experts said protect law-abiding doctors and increase the likelihood that pain patients find relief.
Aaron Gilson, assistant director of the pain and policy studies group, said such rules create "safe harbors" for doctors who prescribe these drugs for legitimate medical purposes and document what they do. Most policies are fairly general, Gilson said, but nonetheless provide protection that doctors feel they need.
Dr. Edward McConnell, president of the State Board of Medical Practice, said a group of doctors and other health care professionals are working to devise guidelines, and will look at incorporating those passed by the Federation of State Medical Boards in 1998 and already used by 21 states.
"For so long, doctors in this state have been hamstrung by the laws pertaining to controlled substances," said McConnell, a primary care physician in Stanton. "We have done a rather poor job of pain control."
In addition to not having a pain policy, the Wisconsin study group also said Delaware has two restrictions that can impede effective pain treatment: Doctors cannot prescribe more than 100 dosage units or a 31-day supply of opioids, and patients must fill prescriptions within seven days.
These restrictions, Gilson said, "could create a very burdensome environment for medical professionals."
But Dryden said the rules help ensure painkillers are used correctly and don't find their way onto the street. Doctors cannot simply give open-ended prescriptions that patients can fill whenever they want and potentially abuse, give away or sell.
Doctors need training
Some experts warn that many doctors are not adequately educated about pain - especially chronic pain.
"With acute pain you have from an injury, once healing takes place, the pain goes away," Somori said. "But with chronic pain ... there are changes in the spinal cord. It becomes a disease of the central nervous system. So it becomes a much harder thing to treat."
For decades, Northwestern's Paice said, pain was not discussed in medical school. A 1999 survey sponsored by the American Pain Society, the American Academy of Pain Medicine and Janssen Pharmaceutica reported that almost a third of pain sufferers who switched doctors did so because the first physician knew little about pain management.
Lieberman said primary care doctors are now learning about pain management in medical school, and most younger physicians seem to be adequately trained.
Still, some said, doctors are practicing in a culture that attaches moralistic judgments to pain. When Lieberman was growing up, he said, "the notion was that pain was an opportunity to have self-sacrifice."
Patients' prejudices also come into play. "We value not complaining about pain," Paice said.
Carr, a Korean War veteran, said his reluctance to view himself as vulnerable interfered with his attempts to control his pain.
"I was a tough guy," he said. "All my life I had toughed it out."
Even when patients seek help, however, doctors are often slow to trust them about pain, doctors and patient advocates said. Pain affects everyone differently, they said, and some people are more tolerant than others.
Doctors are also impeded by today's managed care environment, which encourages quick solutions over lengthy, multi-faceted care, patient advocates said. Often, chronic pain sufferers require several different types of treatment, including medication, physical therapy, chiropractic care and psychotherapy. But convenient, multi-faceted treatment is hard to find, Dorey said. Even many doctors specializing in pain offer only short-term solutions.
Several doctors said a 2001 mandate from the Joint Commission on Accreditation of Healthcare Organizations, which requires hospitals to assess and manage pain, has spurred doctors to take pain more seriously. But changes have been slow. Dr. Philip Kim, director of the pain center at St. Francis Hospital in Wilmington, said doctors are accustomed to diagnosing conditions that can be found through medical tests, while assessing pain requires a different way of thinking.
"Things are getting better," Duensing said. "But the problem remains enormous."
Pain's toll is evident in sufferers' daily lives.
Although medication has allowed Carr to return to an active life, Loder and Collison continue to struggle.
Collison cannot work or lay flat to sleep, and even grocery shopping is a major task. Loder cannot work or sit painlessly for long periods of time. What he misses most is playing with his 8-year-old son.
"Even bedtime stories," he said. "I cannot even do that."
Reach Laura Ungar at 324-2547 or firstname.lastname@example.org.
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