US: Pain, The Disease
posted Monday, December 17 -
7:36 AM by Overgrow
source New York Times (NY)
PAIN, THE DISEASE A modern chronicler of hell
might look to the lives of chronic-pain patients for inspiration. Theirs is a
special suffering, a separate chamber, the dimensions of which materialize at
the New England Medical Center pain clinic in downtown Boston. Inside the cement
tower, all sights and sounds of the neighborhood -- the swans in the Public
Garden, the lanterns of Chinatown -- disappear, collapsing into a small
examining room in which there are only three things: the doctor, the patient and
pain. Of these, as the endless daily parade of desperation and diagnoses makes
evident, it is pain whose presence predominates.
"Yes, yes," sighs Dr. Daniel Carr, who is the clinic's medical
director. "Some of my patients are on the border of human life. Chronic
pain is like water damage to a house -- if it goes on long enough, the house
collapses. By the time most patients make their way to a pain clinic, it's very
late." What the majority of doctors see in a chronic-pain patient is an
overwhelming, off-putting ruin: a ruined body and a ruined life. It is Carr's
job to rescue the crushed person within, to locate the original source of pain
-- the leak, the structural instability -- and begin to rebuild: psychically,
psychologically, socially.
For leaders in the field like Carr, this year marks a critical watershed. In
January, the Joint Commission on Accreditation of Healthcare Organizations, the
basic national health care review board, implemented the first national
standards requiring pain assessment and control in all hospitals and nursing
homes. Standards for evaluating and managing pain in lab animals have long been
tightly regulated, but curiously there had never before been any legal
equivalent for people. Maine took the further step last year of passing its own
legislation requiring the aggressive treatment of pain, and California and other
states are considering following suit.
"It's a field on the verge of an explosion," Carr says. "There's
no area of medicine with more growth and more public interest. We've come far
enough scientifically to see how far we have to go."
Chronic pain -- continuous pain lasting longer than six months -- afflicts an
estimated 30 million to 50 million Americans, with social costs in disability
and lost productivity adding up to more than $100 billion annually. However,
only in recent years has it become a focus of research. There used to be no pain
specialists because pain had always been understood as a symptom of underlying
disease: treat the disease and the pain should take care of itself. Thus,
specializing in pain made no more sense than specializing in fever. Yet the
actual experience of patients frequently belied this assumption, for chronic
pain often outlives its original causes, worsens over time and appears to take
on a puzzling life of its own.
Research has begun to shed light on this: unlike ordinary or acute pain, which
is a function of a healthy nervous system, chronic pain resembles a disease, a
pathology of the nervous system that produces abnormal changes in the brain and
spinal cord. New technology, like functional imaging, which is generating the
first portraits of brains in action, is revealing the nature of pain's
pathology.
Far from being simply an unpleasant experience that people should endure with a
stiff upper lip, pain turns out to be harmful to the body. Pain unleashes a
cascade of negative hormones like cortisol that adversely affect the immune
system and kidney function. Patients treated with morphine heal more quickly
after surgery. A recent study suggests that adequate cancer-pain treatment may
influence the prospects for survival: rats with tumors given morphine actually
live longer than those that do not receive it.
Paradigm shifts occur slowly; if arriving at a new medical conception of pain
has been difficult and protracted, disseminating the knowledge will be more so.
Pain treatment belongs primarily in the hands of ordinary physicians, most of
whom know little about it. Less than 1 percent of them have been trained as pain
specialists, and medical schools and textbooks give the subject very little
attention. The primary painkillers -- opiates, like OxyContin -- are widely
feared, misunderstood and underused. ( A 1998 study of elderly women in nursing
homes with metastatic breast cancer found that only a quarter received adequate
pain treatment; one-quarter received no treatment at all. )
While the undertreatment of pain has led to lawsuits -- recently, a California
court issued a judgment against a Bay Area internist for undertreating a
terminally ill patient's cancer pain -- so has the overprescribing of OxyContin
in cases of patient abuse. It takes only a few lawsuits -- along with the threat
of Drug Enforcement Administration oversight and regulation -- to exert a
chilling effect on prescribing practices. "Doctors feel damned if they do
and damned if they don't," says Dr. Scott Fishman, chief of the division of
pain medicine at the University of California at Davis Medical Center. "The
enormous confusion about pain has led to the hysteria around opiates."
Dr. James Mickle, a family doctor in rural Pennsylvania, describes the leeriness
most physicians feel about treating pain: "Is it objective or subjective?
How do you know you're not being tricked or taken advantage of to get narcotics?
And chronic-pain patients are, generally, well -- a pain. Most doctors' reaction
to a patient with chronic pain is to try to pass them off to someone who's
sympathetic."
And what makes a doctor sympathetic to pain?
"Someone who has pain himself," Mickle says. "Or has an
intellectual interest -- who isn't interested in immediate results, doesn't want
to make money, has a lot of degrees. There's one in a lot of communities, but
then they get all the pain patients sent to them and eventually they burn out
and quit."
Daniel Carr's interest in pain began as an intellectual one. After training as
an internist and endocrinologist, he published a landmark study in 1981 of
runners, which showed that exercise stimulates beta-endorphin production,
leading to a "runner's high" that temporarily anesthetizes the runner.
He began to wonder: if the runner's high is an example of how a healthy body
successfully modulates pain, what abnormality leads to chronic pain? He did a
third residency in anesthesia and pain medicine, became a founder of the
multidisciplinary pain clinic at Massachusetts General Hospital and a director
of the American Pain Society. Six years ago, he moved to Tufts and set up a pain
clinic ( which loses money ) and created the country's first master's program in
pain for health professionals.
Every pain patient is a testament to the dangers of the conservative wait-it-out
approach to pain, as a day spent in Carr's clinic demonstrates. But it is the
last patient of the day, Lee Burke, whose story proves the most instructive,
because her diagnosis turns out to be so simple, while the forces that worked
against it being made earlier were so complex.
Doctors warn patients of many risks, from death to scarring, but rarely mention
the not-uncommon side effect of chronic pain. The life of one of Carr's patients
was ruined by having a nerve nicked during plastic surgery to correct protruding
ears. Another acquired chronic chest pain after being treated in a hospital for
a collapsed lung when a tube was inserted in her chest -- one of the most
nerve-rich areas in the body. One especially poignant category of patients in
pain clinics is that of those who have had surgery specifically to treat chronic
-- usually back -- pain where the surgery leads to new, worse pain, an outcome
for which they say they had no warning.
Pain doctors have many theories about why these kinds of things happen, but the
dialogue is frustratingly one-sided. There are no spokesmen for undertreating
pain -- no one advocates not treating pain.
Although I contacted many of the former doctors of pain patients, it was rare
that one was willing to examine his decisions thoughtfully, as Martin Acquadro
did. It was immediately clear to me that Acquadro, a licensed dentist as well as
an anesthesiologist, was both competent and caring and that the forces that
delayed Burke's treatment were not personal shortcomings but genuine, pervasive
confusions about pain.
Acquadro thought the pain of all acoustic neuroma patients should manifest
itself similarly, and most of those he had seen did, in fact, "respond to
simpler, more holistic therapies." He had not thought of Neurontin, and he
feared opiates. "We don't always do patients a favor putting them on
high-dose narcotics," he says. "When a patient is depressed or
anxious, you're leery about narcotics or alcohol. With Lee, I guess I'd have to
say I was being cautious." His voice changes -- softens and quiets -- as he
gets to the real point: "I was afraid."
Like many doctors, he says he felt comfortable with anti-inflammatory drugs,
although the 3,200 milligrams of ibuprofen that Burke took daily put her at risk
for gastrointestinal bleeding. According to the Federal Drug Abuse Warning
Network, anti-inflammatory drugs ( including aspirin and Aleve ) were implicated
in the deaths of 16,000 people in 2000 because of bleeding ulcers and related
complications. While large doses of the drugs are sometimes needed to treat
inflammation, opiates are a much safer -- and generally more effective --
analgesic.
Although far fewer than 1 percent of pain patients using opiates develop any
addictive behavior, opiates have a reputation for being dangerous, and social
biases -- class, race and sex -- influence who is entrusted with them. Studies
by Dr. Richard Payne at Sloan-Kettering show that minorities are up to three
times as likely as others to receive inadequate pain relief - -- and to have
their requests for medication interpreted as bad "drug-seeking
behavior." A study conducted by Dr. William Breitbart at Sloan-Kettering
found that women with H.I.V. are twice as likely to be undertreated for pain as
men. Many of Carr's patients have some social strike against them that led their
previous doctors to withhold treatment: two were workers' compensation cases,
one was mentally ill, several had histories of substance abuse, all of them were
poor and most were women.
Women tend to be either less aggressive in demanding pain treatment or to be
aggressive in ways that are misinterpreted as hysteria. The longer pain goes
untreated, the more desperate and crazed the patient becomes -- until those
behaviors look like the problem. Burke recalls that whenever Acquadro sent her
to other specialists -- headache specialists, balance specialists and behavioral
pain-medicine specialists -- she would break down during the appointments in
pain and frustration. "They all just figured I was a basket case," she
says. "And I was. I was a basket case."
Rather than dismiss her psychic distress, Acquadro seems to have become overly
focused on it, trying to explain her pain through that prism: "Lee's pain
seemed to be better at the times she was happier, was forming new relationships
or helping others," he says. "And even though she was motivated and
worked hard on stress reduction, the fact remains, she is a tense person."
Naturally. Everyone who has chronic pain eventually develops anxiety and
depression. Anxiety and depression are not merely cognitive responses to pain;
they are physiologic consequences of it. Pain and depression share neural
circuitry. The hormones that modulate a healthy brain, like serotonin and
endorphins, are the same ones that modulate depression. Functional-imaging scans
reveal similar disturbances in brain chemistry in both chronic pain and
depression.
"Chronic pain uses up serotonin like a car running out of gas," says
Breitbart. "If the pain persists long enough, everybody runs out of
gas." Thus, Acquadro's not treating Burke's pain aggressively because she
was "tense" is like "not rescuing someone who is drowning because
they're having a panic attack," according to Breitbart. Difficulty
breathing triggers panic as reliably as pain causes depression. When serotonin
is inhibited in laboratory animals, morphine ceases to have an analgesic effect
on them. Medications that treat depression also treat pain. Depression or
stressful events can in turn enhance pain. Since Sept. 11, pain clinics have
been fuller. "If we started putting sugar in the water, it would affect the
diabetics first -- pain patients respond to stress with increased pain,"
explains Scott Fishman, who also trained as a psychiatrist. But to make stress
reduction a primary strategy for pain treatment is trying to repaint the walls
of a crumbling house.
It is an easy mistake to make -- and one I made myself. i developed pain five
years ago for, what seemed to me, absolutely no reason. A fiery sensation flared
in my neck, flowed through my right shoulder and sizzled in my hand. It didn't
feel like normal pain -- it felt like a demon had rested a hand on my shoulder.
Suddenly I tasted brimstone and burning.
Two years later, an M.R.I. would reveal spinal stenosis, a narrowing of the
spinal canal, and cervical spondylosis, a type of arthritis, both of which
squeeze the nerves and cause pain to radiate into my shoulder and hand. But in
the meantime, I was convinced that if I steadfastly ignored it, the pain would
eventually go its own way. I tried to treat it as a psychological problem. Many
pain patients have had doctors who pathologized them, told them their pain was
unreal; I pathologized myself, hoping my pain was unreal -- or that it would
become so if I treated it as such.
I analyzed the pain in psychotherapy. I tried acupuncture, massage and herbal
remedies. I read books about conversion hysteria, the placebo effect and Sufis
who thread fishhooks through their pectoral muscles. What I didn't read was
anything that might have actually informed me about my symptoms, like Fishman's
excellent patient-oriented book, "The War on Pain." Nor did I consult
any clarifying Web sites, like painfoundation.org.
When the pain depressed me, I focused on the depression. I adopted Dr. John E.
Sarno's popular creed that muscular tension syndrome is the source of most back
ills and faithfully scrutinized my life for stress. It is one of those circular
self-confirming hypotheses: when I was happy and my pain light, I took it as
confirmation of the correlation; when I was happy but had a lot of pain, I
wondered if I didn't want to be happy. I recall how, strapped inside the white
crypt of the M.R.I. machine for more than an hour, I tried to calm myself by
repeating the motto of my Christian Scientist grandparents: "There is no
life, truth, intelligence nor substance in matter. All is infinite Mind and its
infinite manifestation." But I sensed the machine was seeing my pain in its
own way and that its report would be irrefutable. My pain would no longer be a
tree falling in the forest with no one to hear it. The greatest fear pain
patients have, doctors sometimes say, is that it is "all in their
heads." But infinitely scarier, I thought as I lay there, is the fear that
it isn't.
This is the new frontier of medicine," Clifford Woolf says heatedly in his
clipped South African accent. "What we're learning is that chronic pain is
not just a sensory or affective or cognitive state. It's a biologic disease
afflicting millions of people. We're not on the verge of curing cancer or heart
disease, but we are closing in on pain. Very soon, I believe, there will be
effective treatment for pain because, for the first time in history, the tools
are coming together to understand and treat it."
The most important tool in his lab at Mass. General -- a vast landscape of test
tubes filled with rat DNA -- is the new "gene chip" technology that
identifies which genes become active when neurons respond to pain. "In the
past 30 years of pain research, we've looked for pain-related genes, one at a
time, and come up with 60. In the past year, using gene-chip technology, we've
come up with 1,500," Woolf says happily. "We're drowning in new
information. All we have to do is read it all -- to prioritize, to find the key
gene, the master switch that drives others."
Woolf is particularly interested in certain abnormal sodium ion channels that
are only expressed in sensory neurons that have been damaged. He believes he is
close -- perhaps a year away -- from identifying which among these channels is
the most important one. Then -- if his animal data applies to humans --
pharmaceutical companies could design blockers for these channels, and after the
years it takes to develop a new drug, there could be a cure for neuropathic
pain.
On the table before us in Woolf's lab, a graduate student is piercing the
sciatic nerve of a white rat. The rat is of a pain-sensitive variety, one prone
to developing neuropathic pain. In 10 days, when Woolf cuts open the rat's
brain, he will be able to discern the imprint of the sciatic nerve injury. There
will be corresponding maladaptive changes in the way the brain processes and
generates pain.
The biggest question of pain research is whether this pathological cortical
reorganization can be undone. A 1997 University of Toronto study has shown
disturbing implications. Anna Taddio compared the pain responses of groups of
infant boys who had been circumcised with and without anesthesia. Four to six
months later, the latter group had a lowered pain threshold, crying more at
their first inoculations -- providing evidence that there is cellular pain
memory of damage to the immature nervous system.
Terms like "pathological cortical reorganization" and "cellular
pain memory" have a very ominous ring. Are these children really doomed to
be more sensitive to pain their entire lives? Will a cure for neuropathic pain
help all the people who already have it -- or only prevent others from
developing it?
Woolf looks at me and hesitates. "We don't really know," he says
tactfully. Another pause. "In the present state, no." However, he
says, even if the damage cannot be undone, treatment could still help suppress
the abnormal sensitivity. "But obviously, it's going to be much easier to
prevent the establishment of abnormal channels than to treat the ones already
there." He sighs, rests his head against his hand. "Obviously."
I want to ask another question, but I'm overcome by a rare unreporterly desire.
I want him to get back to work.
