IS RELIEF RIGHT AROUND THE CORNER
FOR THE C.P. SUFFERER?
It took David Bogan a decade to build a good life
and only a few seconds to have it destroyed.
A financial adviser in Deptford,
N.J., Bogan owned a sailboat,
a
Porsche, and his own home.
But
one morning in 1995, as he was
driving to his
mother's memorial
service, a car plowed into him
from behind and changed all that.
A back injury from the accident led to surgery.
He woke from the anesthesia
with the sensation
that his right leg was burning up.
The face of Bogan, now 35, bears the marks of two years
of constant pain from
nerve damage in his back.
"I can't shower because the water feels like molten
lava,"
he says. "Every time someone turns on a ceiling fan, it feels like
razor
blades are cutting through my legs." He has
been to 20 doctors in search of
relief. He has
drained his savings and sold his possessions to pay medical
bills,
and his friends, weary of trying to coax him out to
dinner or a movie, are gone.
Last December,
when he began fantasizing about jumping off
the Benjamin
Franklin Bridge over the Delaware River,
Bogan checked himself into Mensana
Clinic, near Baltimore,
which specializes in diagnosing and treating pain.
By
night, he watches old movies to distract himself.
By day, he fights off suicidal
thoughts as his current doctor searches
for ways to stop the pain. Bogan says,
"I'm dying."
To his doctor, Nelson Hendler, treating a patient like
Bogan is humbling. Bogan
is intelligent, articulate, profoundly
depressed, and prepared to kill himself if no
one can
release him from his suffering. In the
eyes of right-to-die proponents,
cases like Bogan's
serve as powerful arguments for legalizing
physician-assisted
suicide.
Indeed, pain is one of the principal reasons the sick ask
for their doctors' help in
dying. And the fear
of an agonizing death underlies the support of more
than 50
percent of Americans for legalizing physician-assisted suicide.
Pain, says Dr.
Mitchell Max, director of the Pain Research Clinic
at the National Institute of
Dental Research, "is the reason
Jack Kevorkian has been so successful."
Pain specialists like Max might agree that legalized suicide
is the answer--except
that they know better. The best
antidote to Kevorkian's appeal, in their opinion,
is better
treatment for pain. And that treatment already is available.
Medicine at
this very moment has the means to relieve
the agonies of the majority of dying
patients.
It could ameliorate the suffering of many people enchained
by chronic
pain. Even more effective treatments are on
the way. Scientists have traced
pain's path from the site of
disease and injury to the brain. This knowledge
is
beginning to yield experimental drugs that eventually
will relieve suffering even
better than current therapies,
with fewer side effects.
What is lacking is not the way to treat pain effectively
but the will to do it. For a
quarter of a century, pain
specialists have been warning with increasing
stridency
that pain is undertreated
in America.
But a wide array of social forces
continue
to thwart efforts to improve treatment. Narcotics
are the most
powerful painkillers available,
but doctors are afraid to prescribe them out of
fear they will be
prosecuted by overzealous law enforcers, or that
they will turn
their patients into addicts. Patients, too,
are leary of the drugs. And living with
pain in stoic
silence still is seen as a sign of moral strength, while taking drugs
to
relieve it is often viewed as weak or evil.
"We are pharmacological Calvinists,"
says Dr. Steven Hyman,
director of the National Institute of Mental Health.
Staggering cost. Thirty-four million people in this country suffer
from chronic
pain. Each year, millions of people seek
relief at hospitals or pain clinics. The
cost to the
nation is staggering. Back pain, migraines, and arthritis
alone rack up
medical charges amounting to
$40 billion annually. And pain results in one
quarter of all
sick days taken, or 50 million in lost workdays a year.
The biggest obstacle to patients receiving adequate treatment,
however, may
not be cost, but ignorance. "The techniques
for pain relief aren't particularly
sophisticated,"
says Dr. Ira Byock, a pain specialist and author of Dying Well
(Riverhead Books, 1997). But doctors don't know much
about them. Only a
fraction of medical residency programs
require a course in pain management.
Even fewer
teach palliative medicine, which involves caring for the pain,
psychological distress, and fears of dying patients
and their families.
Consequently, when most doctors begin
practicing medicine, pain is not even in
their awareness.
A recent study found that half of hospital patients who were in
substantial pain were never even asked by their doctors
and nurses how much
they hurt.
After an experimental treatment for melanoma, says Anita Semjen,
of Cabin
John, Md., the burning pain in her right foot
became unbearable. "My foot was
dark red and swollen, and my thigh
was 30 inches around." Yet, her doctors
offered few painkillers at first.
"They thought I was overreacting," she says.
According to recent
surveys, the majority of AIDS patients endure severe
pain--that is, pain that ranks above an 8 on a
scale of 0 to 10, with 10 being
"get me the gun"
agony, as one doctor put it. More than
half the AIDS patients
who rated their pain as severe
were prescribed drugs that experts consider
barely adequate for
moderate pain, according to one 1996 survey. A quarter
of
them were given no pain medication at all.
Many people suffer longer than necessary because the source
of their pain has
never been properly diagnosed, and if
doctors don't know the cause of the pain,
they can't treat it.
In two studies involving 180 patients in chronic pain, Hendler
found
that about half were diagnosed incorrectly. Many, he said,
were told that
they had "sprained" backs, a diagnosis
that Hendler says is "garbage. You can't
have a
[back] sprain that lasts five years."
Patients themselves contribute to their own misery by
suffering in silence, rather
than complaining. "A patient
says, `I feel better.' But when you ask why they're
not working, they say, `I hurt too much,'"
says Dr. John Loeser, director of the
Multidisciplinary
Pain Center
at the University of Washington,
in Seattle. In a
recent survey, many AIDS
patients said they didn't
tell the doctor about
their
pain because they didn't
want
to be a burden. Others were afraid of being
labeled as "bad" or troublesome patients.
Safe and effective. The conviction that pain should be
endured without
complaint, and without resorting to the
"crutch" of drugs, helps explain the
reluctance of both doctors
and patients to use narcotics, even though they are
potent, safe, and effective weapons against pain.
Also known as opioids
because they originally derived from
the opium poppy, narcotics like morphine,
methadone, and codeine
are routinely given to patients in acute, temporary
pain--after a car
wreck or major surgery, for example. They can blunt even
the
most savage pain in 90 to 95 percent
of terminal cancer patients, according to a
decade of work
by pain specialists Drs. Kathleen Foley and Russell Portenoy
of Memorial Sloan-Kettering Cancer Research Center.
Morphine is the only drug that makes cancer bearable
for Lisa Steinberg, a
41-year-old Bethesda, Md.,
podiatrist who has survived long beyond the nine
months her
surgeon predicted when she was diagnosed with late-stage
breast
cancer in 1993. Unable to walk,
and in excruciating pain from tumors that had
spread
to her pelvic bones, Steinberg had a morphine
pump implanted in her
abdomen last August.
The device, called an intrathecal pump, is about
the size
and shape of a hockey puck.
It delivers a slow, steady stream of morphine
directly into her
spinal column, allowing Steinberg to walk again
and to resume
her life.
Yet many patients balk at using narcotics, even when
pain is severe. "Patients
are terrified of these drugs,"
says Portenoy. Some worry that taking narcotics
early in the
course of their illness will leave them with nothing stronger
when the
pain gets really bad. But for most
people, there is no upper limit to narcotics'
capacity
to dull pain: As the pain mounts, so can
the dose. Others fret that
narcotics will cloud their
minds or leave them completely sedated. One
Washington,
D.C., man, who did not wish his name to be
used, saw his mother
suffer horribly from
abdominal cancer because she resisted taking the morphine
prescribed by her oncologist. "She was afraid
she would be knocked out by the
drugs," the man says.
Yet in many cases, a skillful doctor can combine opioids
with other drugs and analgesics to dull the pain
without dulling the mind. It is
usually at the very end that
high doses are needed and the patient is
kept
sedated much of the time.
Doctors have their own concerns about prescribing narcotics.
State and federal
drug enforcement agencies routinely monitor
narcotic prescriptions, and they
arrest more than
200 doctors and pharmacists a year on charges
of giving them
out too freely (box). To avoid
notice, most doctors refuse to prescribe refills;
others give their patients doses that are too low to
alleviate the pain.
In recent years, more physicians have become willing to
employ narcotics at the
end of life, though most are still not
very skilled at doing so. But few doctors will
even consider
using the drugs to treat people who live in
chronic pain, that is,
pain that is not caused
by cancer and lasts longer than a few months. A
recent
survey of 204 people with chronic pain found
that most had sought help from an
average of 10 physicians,
yet only half had received drugs that reduced their
agony.
Chronic-pain patients who receive workers' compensation find the
least
compassion from healers. Suspecting them
of being malingerers out for an easy
buck, many
hospitals and pain clinics turn such patients away
at the door.
Millions of addicts? No one disputes that some cases of chronic
pain are very
difficult to treat. But pain specialists who,
like Foley and Portenoy, even dare to
suggest that
narcotics provide a merciful and safe relief for chronic
pain, meet
with vehement opposition. The
biggest objection, raised frequently by
opponents,
is that such patients may use narcotics for years,
raising the specter
of millions of addicts.
But at the heart of this debate is confusion about what
constitutes addiction and
what is simply physical dependence.
Most people who take morphine for more
than a few days become
physically dependent, suffering temporary withdrawal
symptoms--nausea,
muscle cramps, chills--if they stop taking it abruptly,
without
tapering the dose. But few exhibit the
classic signs of addiction: a
compulsive craving
for the drug's euphoric or calming effects,
and continued
abuse of the drug even when to do so is
obviously self-destructive.
In three studies involving nearly 25,000 cancer patients,
Portenoy found that
only seven became addicted to the
narcotics they were taking. In part, this is
because new
formulations of the drugs, such as oral morphine, or
narcotics
delivered through a skin patch,
are absorbed into the bloodstream slowly and
consequently
don't provide the heady rush that many addicts crave.
Other
studies suggest that morphine is "eaten up" by the
bodies of people who are in
pain, so that there is literally
none left over to make them high. "If we
called this
drug by another name, if morphine didn't
have a stigma, we wouldn't be fighting
about it," says Foley.
On To Part 2