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Appendix B
Summary of Written Public Testimony
The committee solicited testimony in multiple forms from people who suffer
from pain, their families and caregivers, advocates from pain-related organiza -
tions, and providers who care for pain patients. In addition to direct testimony
given at the public meetings described in Appendix A, the committee asked for
public comments through an online survey (see Box B-1), as well as via e-mail
and other written submissions. The committee received 2,022 responses. Every
response was read carefully, and these comments, along with the in-person testi-
mony described in Appendix A, greatly informed the committee’s deliberations.
These voices lent focus, context, and richness—as well as a sense of urgency—to
the committee’s discussions and the study process. Quotations from this testi-
mony appear throughout this report. This appendix provides brief summaries and
highlights of the unique challenges faced by pain sufferers and the people who
care for and treat them.
The testimony of pain sufferers bears witness to the blight of pain: its mag -
nitude and pervasiveness, the suffering it engenders, and the transforming effects
it has on people’s lives. The testimony attests to the difficulty of finding adequate
pain care because of both the limitations of current science and barriers that
prevent patients from getting the care that is possible. Health care professionals
confirm this perspective, often describing patients who have had difficulty finding
adequate treatment, but their responses also illuminate the difficulties providers
themselves face in providing good pain treatment—especially concerns about the
impact of drug enforcement policies on pain care and the difficulty of treating a
multifaceted problem such as pain within the current health care delivery system.
Yet for all the ways cited by both pain sufferers and health care professionals in
which the current system fails to deliver the best possible care, they are united
293
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BOX B-1
Survey Overview and Testimony Questions
To help the committee, individuals and organizations are invited to share their
thoughts and concerns about pain care, including:
• barriers to and opportunities for improving pain care,
• groups that may be inadequately treated for pain,
• patient experiences in seeking treatment, and
• p
rovider experiences providing pain care (the committee is particularly inter-
ested in the perspectives of primary care clinicians).
The committee invites individuals living with pain and their families, caregivers,
health care professionals, and others interested in these issues to share their
comments.
You may submit written comments in any or all of the following areas. To share
your thoughts, please complete the following electronic form.
Question 1: Barriers to Pain Care
What do you see as the biggest barriers or obstacles to affordable, accessible,
and effective pain care in the U.S. today?
Question 2: Improving Pain Care
What three changes in our health care system could improve pain care?
Question 3: Undertreated Groups
Are there groups of people you believe are not receiving adequate or effective
pain care? If so, who are they and why do you think that?
Question 4: Experiences Seeking Treatment for Pain
If you are an individual living with pain, please describe your experiences seeking
help to treat your pain.
Question 5: Experiences Providing Pain Treatment
If you are a health care professional, please tell us about your experiences in trying
to provide quality pain care for your patients and problems you encounter. Please
indicate if you are a primary care clinician or specialist (and what specialty).
Question 6: Additional Comments
If you have additional thoughts about advancing pain research, care, and educa-
tion or would like to share that information related to the committee’s work, please
use the space provided below to do so. You may also email documents or articles
to support your testimony to iompainstudy@nas.edu.
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APPENDIX B
in agreeing that pain will truly be mastered only when we have more and better
treatments than exist today.
THE IMPACT OF PAIN
Pain sufferers’ survey responses testify to the terrible ways in which pain can
transform one’s life—the sense of loss of self, relationships, and career that
can accompany chronic pain. One woman describes herself as “a shell of my
former self—I lost friends, family, my job, my sanity.” Another speaks of how, “on
my wedding day—one of the happiest day[s] of my life—I was in so much pain,
and so tired, I could barely stand.” She goes on, “so now I find myself in a situation
where I am forced into a life that is ‘just existing.’ Dreams of having a great career
and large family are gone. Please help this cause. It may be too late for me to get
all of my dreams back. It may be early enough to help the others that will follow.”
Yet paradoxically, this affliction often appears to be invisible. “Yesterday
I was lucky, the pain was kind and waited until after I got back home before
showing its true colors . . . black and blue,” one man writes. “No one sees the
colors upon my skin. My pain is internal. It is physical. It is mental.” Another
writes, “my chronic pain does not show up on an MRI or in blood work. Yet it
is with me 24/7 and has changed my life completely so that I am very limited
in my ability to function compared to before my illness.” Pain sufferers indicate
a longing for objective documentation, but in its absence, experience pain as a
deeply isolating state.
Perhaps as a result, one of the most characteristic experiences described by
respondents—one quite different from experience with other serious diseases—is
simply “not being believed” by health care professionals and others. For example,
one woman reports, “after examining me and doing an ultrasound, my doctors
said the only problem I had was in my head.” (She was eventually diagnosed
with endometriosis.) Others report being repeatedly second-guessed about their
motivation: “Since 1991 I have been dealing with mistrust in motives for seeking
pain care. Most doctors I encountered did not believe that my pain was severe
enough to warrant more than ibuprofen.”
Health care professionals report similar observations. A nurse who teaches at
a hospital-based nursing school writes: “I teach students as most faculty do, that
‘pain is what the patient says it is.’ But when I bring them into the clinical arena
they see in real practice that nurses and doctors disbelieve the patients’ com -
plaints, and treat them as drug seekers (this is especially [true for] Sickle Cell,
but also chronic back pain, joint pain etc.).” A provider observes, “I have seen
the misery they [patients] have gone through trying to get proper care and being
denied it based on physician fears. I also have seen the success and the quality of
life improvements when they finally find a doctor who will take them seriously
and is willing to properly manage their pain. But isn’t being in pain bad enough?”
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LACK OF TIMELY TREATMENT
Both health care professionals and patients describe how a lack of timely
treatment causes problems to worsen and lead to new problems. A nurse writes
that “some patients get referred too late,” noting that symptoms such as “RSD
[reflex sympathetic dystrophy] or post-herpetic neuralgia can benefit from selec -
tive nerve blocks, if treated within the first (roughly) 6 months of symptoms, but
many times it is years before a patient is referred to a specialist.” One patient
writes a plea to health care professionals: “Take the issue of pain serious[ly] at the
beginning. Do not say it is all in our head. This does nothing other than making
the original issue worse. For instance, you are in pain, [so] you become less ac -
tive, you gain weight, then the joint problems start, and then the diabetes etc. sets
in. If treatment was accessible in the beginning you could stop the progression.”
Many pain sufferers’ stories include years of misdiagnosis. While some
report eventually finding effective treatment, many report that their pain remains
poorly controlled and describe their journey to finding care as one beset by woe.
Comments a sufferer: “The impersonal hostility of the payment system, the
intellectual poverty of the research, and the cognitive poverty of my providers,
combined to turn me from a spirited and capable professional with a good income
and a bright future, into a needy dependent of the state with no profession, no
future, and a life that is ever more bleak and limited by pain, weakness, dis-
enchantment, and despair.”
ECONOMIC BURDEN
Pain is especially devastating for those who lack the ability to shoulder the
economic burden it imposes (see Appendix C). Many respondents lack health
insurance and the financial resources to obtain treatment. Even when they have
coverage, patients often complain about delays in treatment due to insurance
or workers’ compensation processes. One writes, “my company put me in the
less-than-capable hands of Worker’s Compensation. . . . Finally—they’d HAVE
TO HELP ME. They didn’t. Four more years of stalling, ignoring me, delaying
every possible way.”
In some cases, pain itself has caused people to lose their jobs and health
insurance, thus ending their ability to obtain treatment and placing them in a
downward spiral of disability and poverty. Others report having inadequate in-
surance coverage, such as Medicaid, which does not cover physical therapy or
behavioral health. Physicians write that they are reimbursed so little for Medicaid
patients with chronic pain that they see them only out of charity because other
doctors refuse to treat them.
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APPENDIX B
DIFFICULTIES SURROUNDING PRESCRIPTION OF OPIOIDS
One issue raised frequently by both patients and health care professionals is
the difficulties surrounding opioid pain medication. Pain sufferers describe being
treated like a “common criminal” and a “drug seeker” in asking for pain medica -
tion. Others express anger that fear of the Drug Enforcement Agency (DEA) is,
they believe, preventing physicians from prescribing the opioid pain medication
they feel they need, and describe the arduous process of searching (and in some
cases failing) to find a physician who is willing to prescribe. The belief that
physicians are being influenced by fear or suspicion leads some respondents to
distrust their doctors when medications are withheld, even possibly for valid
medical reasons. For example, survey respondents who describe their condition
as “chronic daily headache” or fibromyalgia express anger at not being prescribed
opioids, but in fact research finds that opioids usually are not beneficial for those
conditions. Thus, a further deleterious consequence of government opioid drug
policy may be the way it undermines patients’ confidence in the medical integrity
of the treatment their physicians provide, thereby interfering with an effective
physician–patient partnership.
Opioid prescriptions are no less fraught with difficulty for health care profes-
sionals who responded to the survey. Physicians who prescribe opioids complain
of facing unfair scrutiny and fearing legal repercussions. A number of physi-
cians describe being questioned by the DEA or state board of medical examiners
and asked to justify their practices—an experience that has adversely affected
their willingness to continue prescribing. They point out that managing pain
through medications is safer and more effective than many medical procedures
and interventions, which elicit no special scrutiny. A family physician writes,
“pain patients are treated like criminals, and are belittled because of their pain.
Non-intervention pain physicians are treated like criminals, when they are only
trying to help patients as best they can.”
An acute care nurse in a hospital describes what she calls “narcophobia”—
when patients are taken off their regular pain medications during hospital stays.
“These patients, who have specialists in pain control in their regular lives, and
who probably spent years arriving at a regimen that works, are then taken off of
those drugs and told to ‘suck it up.’ It is very hard to watch.” Another respon-
dent writes how there is a common misconception among health care providers
concerning dangers “in the utilization of long acting opioids for the management
of chronic pain and the misconception that prescribing short acting opioids is
‘safer’ and less of a risk.” A psychologist writes, “the difference between an
opiate addict who does not have pain and a pain patient receiving proper opiate
medication for pain management is night and day, yet these two types are ap -
proached similarly by physicians under the scrutiny of the DEA, especially on
the East Coast. This is unfair to doctors and cruel punishment to patients. When,
oh when, will physicians and enforcers wake up?”
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298 RELIEVING PAIN IN AMERICA
Other providers take the position that the problems associated with long-
term opioid use are underestimated. A pain specialist who directs a clinic writes
that his data show that among patients on high-dose opioids, more than 50 per-
cent have no history of substance abuse and take the drugs as prescribed, yet
nonetheless develop medical and social problems, which improve when they are
detoxed and treated with alternative analgesics. He reports feeling that prescrib-
ing physicians fail to understand that high-dose opioids rarely maintain their
effectiveness over the long term: “Also, it takes 5 minutes for a doc to renew a
prescription, but much longer to reduce a dose, and some skill is involved, so the
incentive is just to renew or raise the dose for temporary relief.” Other physicians
note the prevalence of accidental death due to unintentional drug overdoses.
Provider respondents see an urgent need for a national system that would
allow them to monitor opioid use. While some states, such as Utah, have devel-
oped a system that allows prescribing doctors to view all prescriptions of con -
trolled substances written for a given patient, this mechanism is lacking in other
states. In any case, a state-by-state patchwork approach does not prevent patients
from simply crossing state lines to get prescriptions from multiple providers.
Responding emergency room physicians point out that they face particular chal -
lenges in trying to assess whether patients for whom they have no history are
legitimate or drug seeking.
Some respondents relay the feeling that the lack of a national electronic
prescription monitoring system leads to opioid prescribing practices that increase
the economic burden for patients, forcing people to take substantial time and
spend money on gas to drive long distances and pay (in full or as a copay) to see
a physician simply to get a 30-day prescription for pain medication. One man
describes how his physician “was constantly trying to force me to come into the
clinic, which is about fifty miles south of my home, for things like a random urine
test, despite my having told him that we were extremely poor, and that there was
no one to leave with my bed-ridden wife.”
REIMBURSEMENT POLICIES
Some health care professional respondents noted that insurance provides
perverse incentives, reimbursing for invasive procedures and high-risk surgeries
while failing to reimburse for the multidimensional treatment of pain (particularly
physical therapy and behavioral health treatment) known as the “biopsycho-
social” treatment model, which has been shown to be most effective for chronic
pain (as well as for many other chronic health conditions). Thus, as one pain
specialist points out, the insurance system rewards “procedure-based care rather
than patient-oriented, biopsychosocial, outcomes-based care.” Numerous pain
sufferers describe being driven to have surgeries that only ended up exacerbating
their pain and causing greater disability.
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APPENDIX B
Behavioral health treatment is vital given the prevalence of depression,
anxiety, and other mental health problems among pain sufferers. A psychiatrist
describes his experience that “many patients who report to primary care with
complaints of pain or fibromyalgia actually have an underlying primary depres -
sive disorder.” As numerous responding pain specialists observe, the failure to
address psychological problems and provide psychological support undermines
effective pain treatment. A primary care physician respondent finds that for
primary care physicians, “chronic pain management requires complex skills in
managing psychiatric and behavioral sequellae (including addiction) for which
training and reimbursement are woefully inadequate. The low reimbursement
of both cognitive work and behavioral medicine in primary care creates time
pressures that limit the ability to carefully assess complex, multifaceted condi -
tions like pain.” Ultimately, he writes, “for many [primary care physicians] it
is easier to let the patient become dissatisfied with care so that they seek care
elsewhere. . . . Research is needed into alternative reimbursement strategies that
will encourage primary care physicians to accept and retain these often complex
patients.”
A neurologist and pain medicine specialist sums up what many providers
agree are some of the primary barriers to effective pain treatment: “1) too many
pain providers give one-dimensional care; 2) patients often expect simplistic
answers or injections; 3) medical providers too often refer pain patients to special-
ists (e.g., orthopedic surgery) rather than to a comprehensive pain center; 4) multi-
disciplinary pain treatment is not well-developed throughout the country.” Another
pain specialist—and director of a pain clinic—decries how “cost cutting has led
to limited access to modalities such as injections, neuromodulation, chiropractic
care, mental health care, massage, and acupuncture for chronic pain.” An internist
notes, “it seems easier to get help with chronic diabetics or heart failure patients,
but not the same kind of support for chronic pain patients.”
There were some reports that providers justify invasive procedures to patients
by convincing them that structural abnormalities in MRIs require surgical inter-
vention, despite the extensive evidence that MRIs reveal many abnormalities in
people who have no pain and that surgical interventions often are unnecessary
and even harmful. A pain specialist writes, “The main problem I encounter are
patients who have . . . been convinced by health care professionals that an in -
vasive procedure is warranted.” Another provider in the Department of Veterans
Affairs (VA) system writes, “one significant problem is the overuse of diagnostic
testing. Patient[s] now have an expectation of the need for imaging and surgery
when they could use self care or non-invasive treatment. Current evidence sug-
gests that imaging studies may create a level of anxiety and fear that may affect
the prognosis of someone suffering from a pain syndrome.” Instead, he advocates
public education, such as that in Australia about staying active and not overtreat -
ing pain (see Box 4-1 in Chapter 4). Chronic pain sufferers seeking disability
status or with pending litigation themselves may have perverse incentives.
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NEED FOR NEW TREATMENTS
Despite the ways in which both patients and health care professionals suggest
that the health care system could do better at delivering the pain care that is avail-
able today, the overwhelming consensus of both groups is that new treatments
are needed. While pain sufferers and providers are aware of the disadvantages of
opioid medications, they often perceive a lack of adequate alternatives. “YES,
we desperately need better medications,” one woman writes. Patients complain
of feeling like “an experiment” or “a guinea pig” as treatment upon treatment is
attempted without success. “We need better drugs, particularly those which act on
the NMDA receptor pathways, substance P antagonists, etc.,” a provider writes.
“One of the biggest problems with chronic pain, is that it isn’t a single disease
with a few neat endpoints. When we did a national educational effort to encour-
age physicians to be more aggressive on treating pain, we [got] an epidemic of
accidental overdoses.” An emergency room physician comments: “We need a sys-
tematic approach, not the ad hoc methods of US medicine. The best treatment is
a functional system.” A psychotherapist writes simply: “I pray for more research
to get to the bottom of this illness that is affecting so many people.”
CONCLUSION
The committee is deeply grateful to all those who shared their experiences
and insights. The committee is mindful, too, of the fact that their testimony only
scratches the surface of the challenges faced by pain sufferers and the people
who help them. In receiving this testimony, the committee tried to bear in mind a
poignant admonition offered by the American Pain Foundation: “for every letter
you receive, consider the other THOUSAND PEOPLE who would love to write
to you, but are too ill to do so.”
