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"THE FACES OF PAIN"

by Renée Steele Rosomoff MBA, RN, CRRN, CRC, CAMS

Historically health care providers -- especially in hospitals--have
always prided themselves on knowing a patient's room and bed number,
the diagnosis, pertinent vital signs, and lab results. Yet, often
they did not know the patient's name, their marital status, whether
they had children, what were their hopes, fears, dreams, occupation,
educational background and what the impact of the medical problem was
to the patient and significant others. In, short, they did not know
the PERSON in bed who was the object of their care and whose life was
entrusted to them.

Those of us who treat people in pain would like to think that we have
come a long way. We now pride ourselves on treating the whole person.
We understand the importance of the mind-body connection as well as
the significance of familial, occupational, and socioeconomic aspects
of the patient's universe.

I am a past board member of APES, President of SPS, and Programs
Director of a large multidisciplinary pain team. And yet I continue
to broaden my knowledge of the many diverse disciplines required and
the breadth of the expertise needed to treat that most devastating
and ubiquitous consequence of trauma or illness--PAIN! Those of us
who are trained in this specialty are aware of the complexity of
pain. We know that the treatment cannot be "one size fits all". We
know there is acute pain, chronic pain, cancer-related pain,
pediatric, geriatric, post-op, labor pain, as well as head, neck and
back pain, and phantom pain--the list is almost unending.

In addition to my long-forgotten encounter with unrelenting pain,
when I bargained with the Almighty for just one pain-free minute, I
have been professionally involved for over twenty years with the
impossible quest to annihilate pain or to accept the more realistic
goal to ameliorate pain. Therefore, I though that I fully understood
the scope of the problem and the suffering component. However,
recently when I had the privilege to serve as a member of the Florida
Pain Commission and hear the testimony of the courageous consumers
and providers, I truly saw "THE FACES OF PAIN."

I was overwhelmed, aghast, and amazed at the sum total of the
suffering and the terribly lonely struggle with this monster "pain"
that so many people must endure. While we have heard such histories
from our patients, the magnitude of this problem was larger than I
imagined.

The testimonies given with quiet dignity were heartrending,
frightening, and sobering because it could happen to anyone of us. I
experienced a sickening realization that we have all been working for
many years to help people in pain, yet we have reached so few! They
came to the microphone one by one and quietly told their stories
about their decent into the abyss. I remember them...

There was the man in the wheelchair who had a good job and new
marriage when his knee and his life were shattered eight years ago in
a mugging. After endless treatment he still has dysesthetic pain
which is so intolerable that he once threatened to shoot off his leg
and was confined to a psychiatric hospital as a suicide risk. He has
lost his job, his wife, and just about everything except his constant
companion--PAIN. He cannot find a physician to prescribe the
medications he needs for pain. He is treated like an addict and he
continues to cry for help. The systems have failed him.

A physician testified that pain medication is not readily available
in his county "after hours." Pharmacies, afraid of robbery, will not
keep controlled substances on hand. This dedicated doctor spends half
the night trying to obtain narcotics for a cancer patient and driving
across the county to bring the patient the medications needed.

Hospice nurses told many horror stories about patients living and
dying in agony because physicians (including some medical directors
of Hospices) were not knowledgeable of pain management and pain
medication use, and were unwilling to prescribe proper medication or
dosage.

There was a young oncology nurse who testified about her study on the
length of time that indigent and very sick cancer patients must wait
to receive care. The results were mind boggling--people waiting 8 to
12 hours to see a physician only to wait another 8 hours to have
their prescriptions filled! After enduring all of that, some
prescriptions given were not much stronger than aspirin and of little
use to the patient.

There was the 47-year-old man suffering from back pain since 1979 who
had 27 surgeries to his back. Once a long-distance runner, he now
spends all of his time seeking pain relief. He attempted suicide
twice and was arrested trying to get drugs for pain. He went to a
methadone clinic and claimed he was an addict so he could get
medication. He is homeless because he cannot afford to buy medication
and also pay his rent. And still lives in fear that his medication
will be cut off any day.

Many pain sufferers told how narcotics made them functional yet lost
them their self-respect. They are stigmatized and treated like
addicts who are seeking drugs for recreational purpose.

A former social worker with RSD testified about years of pain and
fights with her payor to receive care. She previously had been tried
on simulators and methadone. Finally, she was able to have a morphine
pump implanted but subsequently had to undergo multiple surgeries to
replace the pump due to infection. The pump helps to keep her
functional But she has problems obtaining the medications that cost
$1,400.00 a month. The insurance company paid $10,000.00 for the pump
but will not pay for the medication that goes into the pump!
Therefore, the pump is useless and she now lives with intolerable
pain.

Many physicians expressed fear of the medical regulatory boards if
they write too many prescriptions for narcotic/controlled substances.
One physician reported that the DEA had paid him visit that very
morning and how frightening the experience had been. Many patients
expressed fear that their physicians would stop writing prescriptions
for pain medications. Many told of previous experiences when they had
been cut off. A young anesthesiologist testified about the many
insurance plans with little or no coverage to pay for pain treatment
or even for an Epidural block for childbirth. Women in labor were
told that this type of treatment is a "LUXURY."

Oncology nurses told of children with only a few weeks to live who
were dying in agony. The parents refused to have narcotics given to
their children because of fear of addiction. We heard of cancer
patients who must choose between paying for chemotherapy treatments
to possibly save their lives or paying for pain medication to relive
their torture!

The horror stories seemed endless and I realized how evident is the
need for all of our services. Yet our challenge is even greater today
because we exist in a payor climate where the alleviation of pain may
well be considered a luxury. So I urge each of you, when the stress
is great and you want to give up, remember the "FACES OF PAIN" you,
too, have seen. Resolve to continue the fight so we may be able to
help the pain sufferers who are legion. to treat functional heartburn."

Digestive Disease Week is jointly sponsored by the American Association for the Study of Liver Diseases,
the American Gastroenterological Association, the American Society for Gastrointestinal Endoscopy,
and the Society for Surgery of the Alimentary Tract.