Many Specialists, but Little Relief for Most Sufferers
When Patricia Whiteside began suffering crippling migraine pain in her 20s, she embarked on what would be a tortured journey to find relief at the offices of orthopedic surgeons, chiropractors and local pain clinics. At age 62, she is still searching.
Pain patients like Whiteside often spend years shuffling among doctors and other health care providers, trying an assortment of treatments in a frustrating search for an end to their misery.
“Desperation would drive me to different things,” says the mother of eight, who has gotten only fleeting respite with acupuncture, chiropractic care, physical therapy, Chinese herbs and a rainbow-colored collection of pain pills.
At one point, the West Los Angeles woman went to a clinic that advertised different approaches to tackling pain. She was given only nerve blocks--injections that temporarily quelled her headaches--even when she asked about other options. Some physicians refer derogatorily to such centers as “block shops” because they provide quick, temporary fixes without trying to understand the underlying problem.
A combination of medications prescribed by a neurologist finally brought Whiteside’s worst migraine attacks under control, she says, “but in the meantime, I’ve gotten degenerative bone disease in my neck.”
Whiteside is typical of chronic pain sufferers bombarded by promises from an array of health care professionals, some of them drawn into the pain-care field by its lucrative rewards, especially when it comes to treating workers’ compensation cases. But too often, experts say, these pain “specialists” can’t deliver on their promise of relief or a better quality of life.
Like others plagued by unremitting pain in the neck, back, joints or muscles, Whiteside is bewildered by the competing claims of pain treatment clinics run by doctors, psychotherapists, chiropractors and alternative medicine practitioners.
Specialist’s Forte Determines Treatment
More confusing still is how diagnosis and treatment vary with the specialist’s training--and still may not bring comfort.
“The approach and the knowledge about any particular pain problem depends on what door you walk through,” says Dr. Joel R. Saper, director of the Michigan Head Pain and Neurological Institute in Ann Arbor, Mich. “If you have a terrible headache, a neurologist will give you some pills and call it something like migraine. If you walk through a physiatrist’s door, he’ll probably tell you it’s something with your neck and recommend physical therapy. And if you walk through a psychologist’s door, he’ll say it’s sexual conflicts or stress.”
No one knows how many Americans experience chronic pain--or how much they suffer.
“Pain is inherently subjective. Pain is what patients tell us it is,” says Dr. Russell Portenoy, president of the 4,000-member American Pain Society.
Take migraine headaches. An estimated 23.6 million Americans suffer from them--fewer than 40% of whom are actually diagnosed with the condition that brings blinding headaches and aversion to light and noise, said Dr. Steven Graff-Radford, a dentist who directs the multidisciplinary pain program at Cedars-Sinai Medical Center in Los Angeles.
With all the sophistication of modern medicine, you’d think doctors might have won the battle against chronic pain by now.
They haven’t.
While pain treatment and research have blossomed in the last decade, it remains an emerging field with little consensus on diagnosis or treatment guidelines. It isn’t even recognized as a specialty by federal health care agencies.
“What we know about pain is equivalent to one grain of sand on a beach,” says Saper, the Michigan pain specialist who is also chairman of the Pain Care Coalition, a consortium of medical organizations that lobbies for greater attention to pain disorders.
Pain clinics have proliferated with growing recognition that pain can dominate virtually every aspect of daily life: sleep, exercise, sex, household chores, work and relationships with family and friends.
Because pain is largely invisible, sufferers frequently are branded as hypochondriacs, malingerers or even worse--crazy.
“Pain is discriminated against. It’s like the epilepsy of 100 years ago,” says Saper, who said studies show the stigma is worse for women. “We have to raise the bar on respectability for pain.”
For frustrated patients, the keys to finding help are getting a good diagnosis and effective treatment--which is easier said than done.
Credentials aren’t good criteria. Only a small number of doctors are credentialed in pain medicine, including anesthesiologists who can earn an “added qualification in pain medicine.” The American Board of Medical Specialties doesn’t yet recognize board certification by the American Board of Pain Medicine, nor do federal health care agencies, although the state of California does.
Only a few hundred of the thousands of pain centers across the country are accredited by organizations that conduct evaluations. And, because only a few states such as Florida require accreditation, few pain centers see the need to pay the steep fees necessary to get accredited, says Dr. Steven Feinberg, a former president of the American Academy of Pain Medicine.
The Joint Commission on Accreditation of Health Care Organizations, the nation’s largest accrediting group for hospitals, will review hospital-based clinics while CARF, an Arizona-based rehabilitation accreditation group, reviews only pain rehabilitation clinics run by medical doctors.
The American Academy of Pain Management, based in Sonora, Calif., will accredit clinics managed by any type of practitioner, including a massage therapist, acupuncturist, nurse, dentist or chiropractor.
Little to Go On in Choosing a Center
Yet beyond these groups and informal guidelines from the American Pain Society to help consumers look for “desirable characteristics” in a pain care facility, there are few guideposts for the discerning patient.
Even when patients find a pain specialist who can help, getting insurers to pay can be a problem.
“You cannot get coverage for providing truly comprehensive care through a pain clinic. They’ll pay for a shot, or a block or pills,” said Feinberg, a physical medicine and rehabilitation specialist in Palo Alto. He said they don’t pay for the amount of psychological help and rehabilitation such patients need.
Programs that offer comprehensive and intensive pain management often succeed in getting patients on their feet. For example, Feinberg says the in-patient program offered at Stanford Hospital can get the “absolutely worst of the worst patients” back to work. “But what we see often is we can’t provide that level of service to people because other than in workers’ compensation, there is no coverage” for such intensive and expensive services.
According to a recent national survey of people with moderate to severe chronic pain, nearly half of those surveyed said they had changed doctors at least once, and about a third of those in severe pain had seen three or more doctors.
More startling is that more than four of every 10 sufferers said their pain remains out of control; more than half have been uncomfortable longer than five years.
Portenoy, a neurologist and chairman of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York, isn’t sure why there is so much uncontrolled pain. But he suggests three possible reasons: Patients can’t get referrals from insurance companies that might limit treatment for chronic conditions, they’re held back by stoicism or fear of medications, or they “are not committed to getting well.”
Nevertheless, he sees progress at the clinical end of the pain treatment spectrum.
Attitudes toward treating chronic pain with narcotics are evolving, Portenoy says. “A decade ago, it was considered inappropriate. Now it’s considered absolutely appropriate for some conditions. Fears of addiction, or fear of becoming a zombie or fear of tolerance are widely overestimated.”
Still, says Dr. Norman Marcus, president of the 1,200-doctor American Academy of Pain Medicine, “we need to become more sophisticated in our use of medication, not be afraid of higher doses based on individual needs of a patient, and we need to keep the quality of life of the patient foremost in our mind.”
Doctors agree about the need to better educate medical students about pain treatment and enlighten public officials about legitimate use of powerful painkillers without casting “all doctors who want to treat patients with persistent pain as potential criminals.”
The associations have mounted campaigns to get pain its due.
Saper says that doing so requires greater emphasis “on credentialing of those who take care of pain so the really credible people aren’t seen as charlatans. We need to bring the field together so it’s not one-size-fits-all [care]. And we’ve got to get proper support from Washington so we can deliver the care.”
Feinberg says he understands insurers’ concern about cost benefit and value.
“Insurance carriers have lost faith with us because some of our colleagues are providing excessive medications, excessive procedures. They find they spend a lot of money on a pain program, and the pain is not better.”
