Dr. Darlyne Johnson, 46, an obstetrician-gynecologist at South Shore Hospital in S. Weymouth, MA. is no stranger to pain – and not just the pain of other women having babies.
Over the years, Johnson has had surgery, and each time, wound up with such terrible nausea and vomiting from painkillers that she had to stay in the hospital overnight.
Not surprisingly, when she found out three years ago that she needed hernia surgery, she balked. “I knew what was going to happen – I’d get sick.” Then she heard about a device called ON-Q. It consists of a tiny tube, placed in the incision and connected to a small container of local anesthetic worn outside the body. Like water through a soaker hose, the medication, usually lidocaine, oozes into the wound for several days. The idea is that by blocking pain at the site of injury, patients should need smaller doses of opioid painkillers, which act on the whole body, often making people sick and spacey.
“Basically, I was pain-free,” says a delighted Johnson, who immediately began offering ON-Q to her patients undergoing C-sections.
And that is just the beginning of doctors’ increasingly successful efforts to manage pain.
Chronic pain, which can be caused by damage to nerves (as in shingles or diabetes), inflammation (as in arthritis) and diseases (such as cancer), is a fact of life for 50 million Americans, according to some estimates, and as many as 75 million Americans, according to the American Pain Foundation, a consumer group. Another 25 million more suffer every year from acute pain after surgery or injury.
At its essence, pain “is an unpleasant and emotional experience associated with tissue injury,” says anesthesiologist Dr. Daniel Carr, professor of pain research at Tufts-New England Medical Center in Boston. People can also feel pain when there is no obvious tissue damage, as in fibromyalgia, or after a limb has been amputated.
Pain, obviously, is an intensely subjective phenomenon. But there is growing objective evidence of how pain is registered in the brain, too.
In one recent report, Wake Forest University School of Medicine researchers subjected volunteers to pain (heat) on their skin and had them rate it on a scale of 0 to 10. They also scanned the subjects’ brains with fMRI (functional magnetic resonance imaging) and found that in those reporting the most intense pain, several regions of the outer layer of the brain (the cortex) were activated more often and more intensely.
Dr. Catherine Bushnell, a professor of anesthesiology at McGill University, also uses brain scans to study pain. When people are distracted from pain, she has found, the scans reflect a dampened experience of pain, suggesting that a person’s psychological state can change the way pain is processed in the brain.
On a more technical level, pain comes in several forms.
Nociceptive pain is triggered by tissue injury, including strong, noxious stimuli from the outside world such as a pin prick, heat or cold, as well as internal threats such as a kidney stone, obstructed bowe or infection. Neuropathic pain is caused by damaged nerves. Inflammatory pain is caused when joints or other tissues become swollen and release a cascade of natural, but harmful, chemicals.
During transmission of pain signals from, say, a cut finger, to the brain, a slew of chemical signals is produced by injured tissues and nerves, including substance P, bradykinin and glutamate, which Dr. Clifford Woolf, a professor of anesthesiology research at Massachusetts General Hospital, calls “the star of the show.”
At normal levels, glutamate is essential to the functioning of the nervous system; in excess, it can be devastating.
When excess glutamate over-stimulates certain receptors on spinal cord neurons (called NMDA receptors), acute pain can be transformed into chronic pain. Some drugs already on the market such as ketamine and dextromethorphan can block this process.
Researchers now know that not only do all cells, including nerve cells, have ion channels through which substances like sodium and calcium move in and out, but that particular subtypes of sodium channels govern the transmission of pain. “Some sodium channels are specific to pain fibers,” says Woolf. This means that drugs targeted at only these channels could block pain without affecting other cells.
The growing understanding of pain is the way pain is treated, says Dr. James Rathmell, chairman of the committee on pain medicine for the American Society of Anesthesiologists and a professor of anesthesiology at the University of Vermont Medical College in Burlington.
One example is sensitization, or “wind up” pain. When you injure nerves in your finger, nerves in the spinal cord “reorganize to amplify pain and remember it,” says Carr of Tufts. In other words, acute pain becomes transformed into chronic pain.
To prevent this in surgical patients, some doctors now give patients COX-2 inhibitors like Vioxx or Celebrex before surgery. These drugs block an enzyme called cyclooxygenase-2, a key player in pain transmission.
For women in labor, low doses of morphine injected into the intrathecal space around the spinal cord provides “tremendous pain relief,” Rathmell says.
For cancer pain, doctors also implant a permanent catheter (tiny tube) into the intrathecal space and attach the tube to a morphine pump placed in the abdomen. A major Johns Hopkins study showed that this technique not only provides dramatic pain relief, but increased longevity by a month or two.
For people with neuropathic pain, anti-epileptic drugs such as Neurontin (gabapentin) are showing promise. The rationale is that the body produces the same cascade of harmful chemicals during both the “electrical storm” of partial seizures and in neuropathic pain.
Two 1998 studies showed that gabapentin can reduce nerve pain in both diabetes and shingles. Other gabapentin-type drugs are now in clinical trials for pain.
For people with back pain, microsurgery to remove damaged disks in the spine can improve pain control significantly, says Dr. Michael Ferrante, director of the UCLA Pain Management Center and co-director of the UCLA Spine Center. So can non-surgical techniques such as heated coils to destroy nerves in damaged disks.
Directly addressing the link between chronic pain and depression can also help, says Dr. Alan F. Schatzberg, chairman of the department of psychiatry and behavioral sciences at Stanford University Medical School. An epidemiological survey of 19,000 people in Europe shows that there is a huge overlap between pain and depression.
Anti-depressants that boost both serotonin and nor-epinephrine, neurotransmitters in the brain, seem to help with both pain and depression.
Non-drug approaches to pain control, most notably acupuncture, can also be effective for some kinds of pain.
As for Dr. Darlyne Johnson and the ON-Q story? One study by University of Vermont researchers on this method of post-surgical pain control following knee surgery found it had no effect. But the company that makes ON-Q, the I-Flow corporation, says studies of patients undergoing hysterectomies or colorectal surgery found that many patients using it needed less then the usual level of opioids after surgery.
At the Johns Hopkins Hospital, anesthesiologists Dr. Lee Fleisher and Dr. Christopher Wu are studying ON-Q in prostate surgery patients. “We are very interested in seeing if there is a benefit to blocking pain up front and never getting ‘wind up’ pain,” says Fleisher.
There’s no need to convince Dr. Darlyne Johnson of that. After her surgery, she went home quickly and needed only over-the-counter pain relievers: “It was a whole different experience.”
A Conversation with Kathleen Foley
Dr. Kathleen M. Foley, 59, spends most of her waking hours dealing with two subjects that make many people cringe: pain, and death.
As an attending neurologist at Memorial Sloan-Kettering Cancer Center, she treats the pain of cancer patients, including many who are dying.
As director for the last nine years of the Project on Death in America, an effort by George Soros’ Open Society Institute to change the culture of death in this country, she’s been a prominant voice for helping Americans get what polls show they want: a dignified death, in many cases at home, with good pain control and emotional support, for both patient and family.
As chair of three World Health Organization expert panels over the last 27 years, she helped create guidelines for doctors on managing cancer pain, setting up palliative care services and controlling pain in children.
A New Yorker through and through, Dr. Foley was born and raised, with her four sisters and two brothers, in Queens by her homemaker mother and banker father. Though her mother died when Dr. Foley was 13, she chugged straight through a Catholic girls’ school, St. John’s University for a B.S. in biology, Cornell University Medical College (now Weill Medical College of Cornell University) for her M.D., and New York Hospital for her internship and neurology residency. She has been at Sloan-Kettering ever since.
Q. How did you get interested in the subject of death and dying?
A. I was dragged into it. I was being interviewed for a position at Sloan-Kettering to focus on pain in cancer. I told the interviewer I knew nothing about pain. He said, ‘That’s okay. Nobody else does, either.’ This was 1974. Researchers had just discovered that there were receptors in the brain for painkillers, or opiates.
We knew how to give morphine for acute pain, but we didn’t know how to use it for chronic pain. It’s quite shocking to remember. Six years after I got to Sloan-Kettering, we set up the first pain service in the country for cancer patients.
Q. In the last five years, three major reports from the Institute of Medicine (part of the National Academy of Sciences) have shown that pain control is woefully inadequate. A 1995 study by the Robert Wood Johnson Foundation showed that 50 percent of adults die in pain. If we know so much about pain these days, why aren’t we more aggressive about controlling it?
A. A big part of the problem is that our efforts to treat pain aggressively have run into the war on drugs, as the furor over opioids (or narcotics) like oxycodone [OxyContin] shows. Opioids are safe and effective medications and patients can function very well on them. But the increase in abuse of prescription opioids is impacting the use of these drugs for legitimate medical problems. Some drug stores won’t stock opioids. In some states, Medicaid makes doctors get prior authorization before prescribing them. Some doctors in New York – 30 percent in one survey – report they are reluctant to prescribe them because of strict regulations.
Q. So, what’s the solution?
A. We need to balance our concerns about the risk of prescription drug abuse with the needs of pain patients. There are certain pain syndromes like neuropathic pain – pain resulting from injury to a nerve – for which current therapies work for less than half of the patients less than half of the time. We need to make pain research a national priority.
Q. Why don’t medical schools do a better job on all this? According to a 2000-2001 survey of 125 medical schools compiled by the Association of American Medical Colleges, only three percent had a separate, required course on pain management and only four percent had one in end-of-life care. The 2003 survey, which asked questions differently, still shows only a few schools teaching pain and palliative care as a separate course, though most do include these issues to some extent in the curriculum.
A. The three Institute of Medicine reports identified lack of professional education in pain and palliative care as the major barrier to advancing these areas of expertise.
Q. Hospice care, usually in the patient’s home but also in nursing homes, assisted living facilities and hospitals, is growing. According to the National Hospice and Palliative Care Organization, 11 percent of all deaths in 1993 took place in hospice; by 2002, it was 28 percent. Yet polls show about 75 percent of Americans want to die at home. Why hasn’t the hospice movement grown more?
A. It’s complicated. To qualify for hospice benefits, a patient has to have about six months to live. But doctors have trouble prognosticating like that, especially for diseases other than cancer, such as Alzheimer’s disease and congestive heart failure. So people get to hospice late – when they have only a week or two to live. But the biggest issue is that in our culture, we don’t want to address death until it happens.
Q. If more people were in hospice or palliative care, wouldn’t that save money? It must be cheaper to take care of someone at home than in a hospital.
A. It’s probably at least cost-neutral. If we expand hospice to non-cancer populations, we may shift costs from acute, inappropriate care to appropriate, quality care.
Q. In many ways, palliative care seems like an ideal form of medicine. Why do you have to be dying to get that kind of pain control and emotional support?
A. Actually, we argue that palliative care should be an integrating principle for both those at risk of imminent death and those with chronic diseases. The World Health Organization has it right – palliative care is an approach to care for patients with life-threatening illnesses that focuses on their quality of life.
Q. If we really had that, would we need physician-assisted suicide?
A. Probably not. Since Oregon passed its law in 1997, there have been 129 cases of physician-assisted suicide, although requests for a doctor’s aid in dying have increased. The real issue is providing palliative care for all Americans. At the present time, we have not provided the education to health care professionals and to the public about their real choices.
Q. A Canadian study three years ago showed that terminally ill cancer patients who denied that they were dying were three times more likely to be depressed than those who exhibited understanding of their imminent deaths. Do you think talking about death helps?
A. There is a distinction between people knowing they are going to die soon and their being willing to talk about it. Many people know, but don’t wish to articulate it. Some don’t need to talk about it. But you don’t have to force someone to talk about it to be helpful. I am most humbled by all of this. What you can ask is ‘What do you know about your situation? What are you worried about? And how can we help.’
Q. So what is your definition of a “good death?”
A . It’s a good death is if the patient has what he or she wanted – having the family there, if that’s what they wanted, or not, if it’s not. It’s not suffering in the last days or hours or minutes. It’s having an opportunity to say goodbye, if that was something they valued. And it’s being recognized as the person they have been.