Illustration by Mark Moran
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Prisoners of Pain
By Barry Yeoman, September & October 2005
Why are millions of suffering Americans being denied the prescription drug relief they need?
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Deborah Hamalainen was feeling more and more agitated by the minute. Waiting
to see her neurologist, she was silently rehearsing a confrontation that had
been building for months. She planned to look the doctor directly in the eyes
and demand that he treat the chronic pain that had invaded her life.
In the two decades since doctors diagnosed her with multiple sclerosis,
Hamalainen learned to tolerate numb extremities, tingling sensations, even the
weakness that causes her left foot to drag. And it wasn't like her to be
confrontational. "I'm much happier in denial," admits the
soft-spoken 52-year-old sculptor.
Some physicians fear that if they deliver humane pain care, they’ll face prosecution by the DEA.
The symptoms she couldn't ignore, though, were the intense shooting
pains that raced across her shoulder blades and down her limbs. By the time she
arrived for this doctor's appointment, they were a 24-hour presence.
Hamalainen barely slept anymore. Rolling over was an ordeal. When the Medford,
New Jersey, resident awoke, stiff and exhausted, she braced her shoulders so
they wouldn't move as she rose. Sometimes, her husband had to pull her
upright from the bed.
Every three months for three years, Hamalainen saw this neurologist. Each
time, she mentioned the pain. Each time, the doctor deftly changed the subject.
Each time, she left in pain.
But this time would be different.
Hamalainen waited quietly as nurses wandered in and out of the examination
room, taking her vital signs. Finally, she lost it. "My pain is
real," she said frantically to one of the nurses. "I need relief. Why
does he keep refusing to talk to me about it? What do I have to do?"
The nurse turned to her conspiratorially and lowered her voice. "I
should not tell you this," she said. "But he doesn't want to
treat your pain because the treatment that works is opioids, and he's
afraid to prescribe them."
With that conversation, Hamalainen joined legions of patients who are the
victims of a troubling and all-too-common medical practice: the undertreatment
of significant and debilitating pain. An estimated 75 million Americans suffer
from chronic pain, according to the American Medical Association, and numerous
studies have shown that patients often don't receive the medication that
could provide relief. Undertreatment runs as high as 50 percent among
advanced-stage cancer patients and 85 percent among older Americans living in
long-term care facilities.
Much of this suffering is preventable. Experts do know how to reduce pain
safely. In particular, physicians now know that opioid
analgesics—medicines such as morphine and oxycodone—provide relief
for a wide spectrum of pain problems, with relatively few side effects when
taken as prescribed. "We can't cure everybody who is in pain, but we
can make almost everyone feel better," says Scott Fishman, chief of the
division of pain medicine at the University of California, Davis, and president
of the American Academy of Pain Medicine. "Becoming a prisoner of pain is
not an inevitability."
Additional Resources
For more on pain-management issues, visit the website of the Pain Relief Network.
The problem is that the most effective medications cause skittishness among
many physicians. Poor medical-school training has left them unaware of the
tools at their disposal and even the importance of treating pain. Many harbor
the false impression that opioids frequently lead to addiction or unmanageable
side effects, even when used correctly for a legitimate medical need.
'Becoming a prisoner of pain is not an inevitability.'
Worse, some physicians fear that if they deliver humane pain care,
they'll face prosecution by the federal Drug Enforcement Administration
(DEA) or state medical boards. In recent years, a number of respected doctors
have been investigated and even prosecuted after prescribing large amounts of
opioids. The result, according to experts, is an environment that scares
doctors away from practicing good medicine.
"I've had prominent physicians call me up and say, 'I have
patients doing well, taking opioids for otherwise treatable pain, but I'm
going to stop writing prescriptions because I don't want the DEA coming
into my office and putting handcuffs on me,' " says James Campbell, a
neurosurgeon at Johns Hopkins University. "Five years ago, we were
actually doing a better job at handling pain patients. Now we've seen a
backslide, and patients are definitely the victims. They're
suffering."
On his first day as a licensed physician, Russell Portenoy had a troubling
experience that would influence the course of his career. At the New York City
hospital where he was interning, a nurse summoned him to a room where a cancer
patient was moaning with abdominal pain. Portenoy knew the woman would benefit
from opioids, but he was new at doctoring, so he first phoned the resident in
charge to clear his decision.
"I have a patient here. She's 60 years old, she's got
metastatic ovarian cancer, and she's in bad pain," Portenoy told his
supervisor.
"What do you want to do?" the resident asked.
"Well, I thought we should give her some pain medicine."
"What do you want to give her?"
"Morphine."
There was silence on the other end of the line. It was 1980: even physicians
who endorsed opioids for terminally ill patients believed that morphine was too
potent and too dangerous. Finally, the resident said, "Look, you're
the doctor. You want to give her morphine, give her morphine." After
further consultation, Portenoy wrote an order for a 3 mg injection, less than
one third of what he would likely give her today. He never checked back to see
if the medication worked.
The patient was still on Portenoy's mind the following year when he
decided to specialize in pain medicine. "I'd given somebody with
severe cancer pain a dose that didn't have a prayer of providing any
benefit," he says. "My hope is that there was such a profound placebo
effect that she didn't scream the rest of the night."
Portenoy joined a coterie of pioneers who encouraged their colleagues to
become bolder in treating patients' suffering. They argued that pain is
more than a symptom; it's a disease by itself that can trigger a cascade of
other health problems—from a weakened immune system to obesity—if
left untended.
At Memorial Sloan-Kettering Cancer Center, where he launched his career as a
researcher and pain physician, Portenoy initially concentrated on cancer pain.
Eventually he discovered that opioid medicines—routinely prescribed in
advanced-cancer cases—also worked for patients without terminal
illnesses. They relieved the symptoms without fogging patients' brains or
turning them into addicts. The only major ongoing side effect, constipation,
was manageable with other drugs. But when Portenoy shared the news in a 1986
journal article, he received excoriating criticism from his colleagues.
Slowly, time has proven Portenoy correct. In 1996 two leading professional
groups declared opioids "an essential part of a pain-management
plan." Five years later, the DEA and 21 health organizations agreed that
opioids are often "the most effective way to treat pain and often the only
treatment option that provides significant relief."
Across the United States, hospitals are starting to take the issue
seriously, creating programs specializing in pain management. Portenoy's
own department, at New York City's Beth Israel Medical Center, has 14
physicians, a team of researchers, and training programs for doctors and
others. Using opioids and other therapies, these programs have restored
normalcy to many lives.
"It's a miracle," says 55-year-old Michele Ferreri, a Staten
Island, New York, woman who suffers from a painful nerve condition that
appeared in the aftermath of shingles. Once unable to get out of bed because of
her burning headaches, she started taking extended-release morphine and other
medications after seeing Portenoy at Beth Israel. Now she lives an active life,
taking her mother shopping, doing laundry, and attending social functions with
her husband, a hospital CEO. "I can smile now," she says. "I can
smile and greet people."
Until recently, there was no legal incentive for doctors to take pain
seriously. That's starting to change. In 2001 a California jury awarded
$1.5 million to the family of a lung-cancer patient who lay undermedicated and
dying in a hospital near San Francisco. (The award was later reduced in keeping
with state law.) Two years later, the California Medical Board reprimanded a
physician in a similar case involving a nursing home. These decisions
"sound a resounding wake-up call to all health care providers that failure
to treat pain attentively will result in accountability," says Kathryn
Tucker, attorney for Compassion & Choices, which litigated the cases.
But the wake-up call hasn't stirred everyone. Millions of Americans
still don't receive the therapy they need. "The odds of your getting
good pain management are, at best, 50-50," says UC Davis bioethicist Ben
Rich.
Studies bear Rich out. One survey of Oregon families, published in 2004,
showed that almost half of terminally ill patients were in significant pain or
distress during the last week of their lives. In a study of nursing homes in 11
states, Brown University researchers found that two thirds of the residents
initially found to be in daily pain were still suffering two to six months
later.
But even when treatment is available, patients often reject it because of
widely held misconceptions. Popular media play up addiction—be it on the
TV series ER, where Noah Wyle portrayed a young physician addicted to
prescription painkillers, or in tabloid newspapers, which devoted voluminous
ink to Rush Limbaugh's struggle with pain pills in late 2003. Indeed,
Limbaugh's alleged drug of choice, OxyContin (a form of oxycodone), has
become popular among rural drug abusers, who chew the pills to destroy their
time-release mechanism and get a heroinlike rush.
In reality, for those using opioids as prescribed, the likelihood of
addiction is extremely low, according to research. "It's really an
unwarranted fear," says Christine Miaskowski, former president of the
American Pain Society. Many patients do become physiologically
dependent—meaning they'd go through withdrawal syndrome if they quit
cold turkey—but this is a normal condition that can be managed by
tapering down the dosage. It's not the same as addiction, which requires
psychological dependence. Experts say patients with a history of drug abuse can
safely use opioids too, as long as they are carefully monitored by their
physicians to avoid a recurrence of their abusive behaviors.
These reassurances don't convince everyone. "There is a
just-say-no-to-drugs attitude in the United States," says Diane Meier, a
geriatric and palliative-care specialist at New York City's Mount Sinai
Medical Center. "Even my own family will say, 'I don't want to be
doped up on those drugs.' "
Patients aren't alone in their misinformation. Physicians, trained to
suspect there's an abuser lurking behind every painkiller
request—and, to be fair, there sometimes is—still confuse addiction
with physical dependence. The facts don't dissuade them: although Ferreri
has become functional on morphine, her family doctor still "talks to my
husband all the time about the amount of medication I'm on, how dangerous
it is. He really makes me feel that I'm a drug addict."
Worse, some physicians simply don't understand the importance of
treating pain at all. Miaskowski, a professor in the physiological nursing
department at the University of California, San Francisco, recently completed a
study of cancer patients. "We had one patient whose primary care physician
told her, 'Don't take your pain medicine. Let the pain kill the
cancer.' " Was this advice offered years before recent advances in
pain management? No, she says. "This was 2001."
There's another, more ominous reason some doctors don't treat pain
aggressively: they don't want to end up like Arizona physician Jeri
Hassman.
Hassman, a physical medicine and rehabilitation specialist licensed in 1986,
opened a solo practice in 1999 to focus on nonsurgical treatments for injured
patients. Working with physical therapists and chiropractors, she developed a
comprehensive program that includes massage, electrical stimulation, muscle
injections, and even posture lessons. She also prescribed painkillers.
"Medications are important," she says. "If you decrease pain,
you get better compliance with exercise and other rehabilitation." Until
2002, she says, "I wasn't afraid of prescribing strong pain medicines
alongside the available therapies."
Then, in May of that year, federal agents stormed her Tucson office in full
view of her patients. They spent eight hours questioning her staff, seizing
patient files and appointment logs, and copying the hard drives off her
computers. According to a government brief, the DEA had been contacted by
pharmacists "concerned about the large amounts of narcotic drugs that were
being prescribed for Dr. Hassman's patients, plus the frequency with which
they were returning for refills." The druggists were also concerned that
some medicines had fallen into the hands of nonpatients, the brief said.
Hassman was arrested and charged with 320 counts of illegally distributing
narcotics and 41 counts of health care fraud.
Just before the case was scheduled for trial, federal prosecutors offered
Hassman a plea agreement, allowing her to plead guilty to four counts of
failing to report prescription abuse. Unwilling to risk a jury trial, Hassman
accepted the offer. She was sentenced to two years' probation and agreed to
surrender her DEA license to prescribe controlled substances.
Hassman was relatively lucky. This April, Virginia pain specialist William
Hurwitz was sentenced to 25 years in prison for drug trafficking after
prescribing large doses of painkillers such as OxyContin, morphine, and
methadone to his patients. One of his patients died after taking a very high
dose of morphine. DEA officials likened Hurwitz to a heroin dealer. Others,
though, testified that Hurwitz provided them with the only effective relief
they had ever received for debilitating pain.
Though the DEA wouldn't comment for this article, it has previously
insisted that it only goes after bad apples. "Our focus is not on pain
doctors. Our focus is on people who divert drugs," agency official
Patricia Good said during a 2004 teleconference. But physician groups and
patient advocates point to a growing list of respected pain doctors who have
been prosecuted by the DEA and by state medical boards. They say that while the
DEA has a legitimate interest in preventing the diversion of harmful drugs, the
agency's adversarial zeal has grown in the past four or five years.
For its part, the DEA notes that it arrests fewer than 100 doctors a year on
drug-diversion charges—hardly a full-scale attack on the profession. The
numbers hardly matter, though, because the arrests, and the publicity
surrounding them, have created a chilling effect. "Every time a physician
picks up a newspaper or hears an account of some physician who has been accused
of inappropriately prescribing controlled substances, it reinforces the
proposition bad things can happen to you when you attempt to manage
patients' pain aggressively but appropriately," says bioethicist Ben
Rich. "Doctors don't say, 'I'll be more judicious and that
won't happen to me.' Their reaction is, 'I don't need
this.' "
It took Deborah Hamalainen another year, plus the encouragement of a friend,
to find effective treatment for her pain. Early one morning, the two women took
an 80-mile bus trip to New York City, then took a taxi downtown to Beth Israel
Medical Center. There, Hamalainen met with pain specialist Russell Portenoy,
who found her story credible. Portenoy explained to Hamalainen that he
couldn't cure her multiple sclerosis, but he could control her symptoms.
"The goal is to focus on the pain itself, to get you comfortable, and to
help you function," he told her.
After monitoring several medications for side effects, Portenoy and
Hamalainen settled on fentanyl, a synthetic opioid delivered through an
adhesive patch worn on her lower back. She uses oxycodone as a
"rescue" drug when the fentanyl isn't effective.
As Portenoy predicted, the medicine hasn't eliminated the source of
Hamalainen's pain. In fact, the multiple sclerosis has progressed.
She's been losing feeling in her hands and feet, dropping objects, and
tripping. She relies on a pair of canes to get around. Still, with the pain
under control, Hamalainen has been able to return to her art. She recently had
a mixed-media exhibition at the gallery where she used to work. In one
sculpture, she took old canes—including the ones her father used after he
lost a leg to diabetes—and smashed them with an ax, then enclosed them in
a clear plastic exhibition box.
When the pain was at its worst, Hamalainen contemplated suicide. Now, with
opioids to relieve the symptoms, Hamalainen can envision a productive artistic
future. "Being able to be creative again has been thrilling," she
says. "It's like having a new life."
Barry Yeoman last wrote for AARP The Magazine about eminent domain
("Whose House Is It Anyway?" (May
& June 2005).
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