Cynthia Hildt, a 64-year-old retired schoolteacher diagnosed with degenerative disk disease at age 17, spent the better part of four decades seeking relief for the intractable pain that all but ruined her life. Beginning in her twenties, she underwent several operations, some in which disks were removed and vertebrae were fused; ultimately, she says, there was no more surgery to do, and the pain "just got worse and worse." Struggling to continue working, she sought help from doctor after doctor, with no luck. "They were all afraid I'd become an addict," she remembers. "One doctor actually gave me a prescription for three tablets of Percocet, which isn't even enough for one day. I almost threw it at him, I was so mad." Ultimately, she was forced to go on disability.
In 1998, she found her way to Beth Israel Medical Center's Department of Pain Medicine and Palliative Care. Housed in a nondescript redbrick building on Union Square East, it's the only fully separate hospital department of its type in the country, where treating pain is on a par with curing disease. It is the creation of Dr. Russell Portenoy, who put Hildt on a potpourri of medications ranging from morphine tablets to a narcotic lollipop.
"We're still trying to find the best combinations," says Hildt. "But I feel like a different person. My whole life has turned around." Though she walks with crutches and is facing knee surgery soon, she's getting out again and enjoying her life. "I don't feel so helpless and hopeless now. I can't tell you how many times I thought of suicide before. It was just torture."
Portenoy's work is predicated on the notion that pain, rather than being an ancillary and ignorable symptom of some "real" problem, deserves recognition and treatment, whatever the source, whether it's fixable or not, by just about any means available. To a patient, this may sound like a given, but in truth, it's a radical departure. Historically, pain hasn't rated high on the medical priority list. "It's not part of medical culture," explains Portenoy. "Doctors aren't trained to assess subjective complaints like pain. We like to look at X-rays and lab values and see numbers and view them as objective evidence. We're uncomfortable with the subjective."
There are additional barriers to treatment as well. Many medical schools still don't place much priority on pain, for example, and most insurance companies are set up to reimburse technology, not the time-consuming doctor-patient sessions often required to diagnose and treat each individual patient's problem.
"The vast majority of patients with chronic pain," says Portenoy, "never see pain specialists."
"Understanding pain takes time," says Dr. Scott Fishman, chief of the division of pain medicine at the University of California-Davis and author of The War on Pain. "And since doctors don't get reimbursed for spending time with patients, it makes it more likely that there are patients out there who aren't getting appropriately treated."
All of which, pain experts insist, is shortsighted. Pain is best treated early, though it rarely is. What's more, un- or undertreated pain often has consequences as grave as untreated disease, from longer hospital stays and rehabilitation to poorer healing, a depressed immune system, chronic pain and depression, lost time at work or being fired, and a higher incidence of suicide. As many as 50 percent of all dying patients are undertreated for pain, robbing them of their last remaining time with family and friends.
"Despite enormous strides in our ability to treat pain," says Portenoy, "the vast majority of patients with chronic pain never have the opportunity to see pain specialists."
But the tide finally has begun to turn toward conquering pain and overcoming the mind-set that prevents its effective treatment. With new theories about what causes it, better understanding of molecular biology, and improved technology, pain is losing its symptom status and emerging as a treatable entity in its own right, complete with its own societies (the American Pain Society and the American Academy of Pain Management, to name just two) and a proliferation of new tools and treatments.
Nowhere is that change more evident than in the pain-treatment center and hospice at Beth Israel. Portenoy -- one of only four doctors in Manhattan whose primary specialty is the treatment of pain -- oversees a staff of eight doctors, two psychologists, a social worker, seven advanced nurse-practitioners, and some 550 patients who have been sent there by their doctors and, in many cases, by other hospitals (despite the fact that there are top pain specialists and treatment facilities at St. Luke's-Roosevelt, St. Vincents, Mount Sinai, NYU Medical Center, and, particularly for cancer patients, Memorial Sloan-Kettering). Even so, Portenoy concedes, the majority of his patients come not at the outset of pain but after lengthy, typically ineffective treatment elsewhere, or none at all. And many of them come even though their insurance won't pay for treatment because so much of what takes place there is time-consuming, not to mention experimental.
What scientists have known for a long time is that the sensation of pain is conveyed from the site of injury via electrical impulses that hop from one nerve cell to the next, ultimately climbing the spinal cord to the brain, where the sensation is interpreted. What they have come to know only recently, however, is that there is a certain malleability in our nervous systems -- the science-speak term is "plasticity" -- that makes the process much more complex than anyone ever realized.