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3
Care of People with Pain
Appointment after appointment, test after test, and of course, nothing
to really confirm [the diagnosis]. . . . Having pain that I did not understand,
as a physical therapist, fearing some dreadful disease was hard enough. . . .
So, in addition to pain, I had anxiety and depression. . . . The medication
that finally gave me better relief was pulled off the market recently by
the FDA.
—A person with chronic pain1
While pain care has grown more sophisticated, the most effective care still
is not widely available. Some cases of acute pain can be successfully treated
but are not; others could be dealt with promptly, but agonizing delays occur.
And most people with severe, persistent pain still do not receive—and often are
not offered—systematic relief or the comprehensive, integrated, evidence-based
assessment and treatment that pain care clinicians strive to provide.
Currently available treatments have limited effectiveness for most people
with severe chronic pain. For many such individuals, pain management on a
daily basis takes place outside any health care setting. They must respond to and
attempt to control their own pain while they are at home, at work or school, or
in their communities as they go about their lives as actively as they can, or think
they can. From that vantage point, the assistance provided by health pro fessionals
1 Quotation from response to committee survey.
113
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114 RELIEVING PAIN IN AMERICA
is largely a matter of guiding, coaching, and facilitating self-management. The
clinician’s approach clearly must be patient-centered—that is, specific to the
individual—to be effective. Because skills in guiding and coaching are not spe -
cifically emphasized in medical education, few physicians are sufficiently pre -
pared to perform this support role, although some health professionals from other
disciplines, such as nursing or psychology, may be. Worse, even those physicians
and other health professionals who are sufficiently prepared encounter obstacles
because of the way health care is typically organized, reimbursed, marketed,
and evaluated—namely, around specialization, procedural interventions, and a
hierarchy of care management.
To a great degree, as this chapter describes, effective pain care involves a
number of individuals, beginning with the patient, and various treatments. First
and foremost is self-management—that is, the patient’s attempts to manage
pain and prevent flare-ups or additional injury. Beyond self-management, the
health care sector provides pain care through primary care, specialty care, and
pain centers, each of which may offer diverse treatment approaches, including
medications, interventional procedures, surgery, psychological therapies (not
typically available in primary care), rehabilitative and physical therapy, and
complementary and alternative therapies. This chapter describes these approaches
in general terms. People with pain frequently consult various types of providers,
often sequentially but sometimes concurrently, and use many different therapies
as they seek relief, knowledge, and understanding. This chapter also examines
selected issues and barriers in pain care, including how clinicians assess pain;
issues around the use of opioid medications; the perverse incentives incorporated
in most health insurance coverage; and patient-level issues, such as unrealistic
expectations or reluctance to report pain. Finally, the chapter describes some
emerging models of effective pain care, including those of the Department of
Veterans Affairs, the Department of Defense, quality improvement practitioners,
and award-winning programs.
The resources available to help the tens of millions of Americans with
acute and chronic pain are few and stretched thin. Nor is the path to maximum
achievable relief straightforward or clear of pitfalls. Small measures will not sig -
nificantly improve pain care. Rather, as discussed in Chapter 1, a cultural trans-
formation in how pain is perceived, diagnosed, and managed will be necessary to
make the best care currently possible—care we know how to provide—accessible
to Americans in pain.
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CARE OF PEOPLE WITH PAIN
TREATMENT OVERVIEW
Is it too much to ask that we, the patients, no longer be bound to a sys-
tem where no one professional takes responsibility for the patient—a system
of unbelievable referrals with unscientific, unproven treatments (and hope)
sold to the patient by each referring physician. In many cases, patients end
up worse and more and more destitute, yet they grasp for hope with each
referral.
—A chronic pain advocate2
Numerous factors—involving the type of pain, one’s background and per-
sonal traits, and the family and social environments—affect an individual’s treat -
ment plan. In many different cases, especially for people with complex, chronic
pain conditions, biopsychosocial care (taking into account patients’ unique bio -
logic and genetic constitution, their psychological and emotional composition
and reaction, and the societal and environmental framework within which they
reside and function) has been shown to be advantageous. In all cases, a trusting
relationship between patient and clinician fosters clear communication intended
to improve outcomes.
Steps in Care
When confronted with pain, some people seek professional help early on,
probably from a primary care clinician, while others attempt, at least initially,
to handle the situation on their own. If the pain persists, however, affecting
physical functioning and quality of life, a person is likely to seek treatment—and
should do so—in case the pain is functioning in its warning role as described in
Chapter 1.
At least initially, a clinician probably will assume pain is a symptom of some
underlying condition and prescribe analgesics, while focusing on discovering
what the underlying problem might be. But if a cause cannot be found, if early
treatments fail to bring improvement, and if pain persists for several months, it
may progress to the point where it becomes a disease in itself, that is, an abnor-
mal condition that impairs or disrupts normal bodily functioning (this is almost
always chronic pain). Then, regardless of the initiating process, cause, or under-
lying disease, the clinician must focus on management of the pain condition in
order to assist in restoring the individual to a better state of health. This is not to
2 Quotation from submission by Peter Reineke of stories from the membership of patient advocacy
groups.
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say that all pain is a serious disease. When pain is a disease in itself, however, it
requires comprehensive assessment, care planning, and treatment.
Many factors affect the initial pain experience:
• the severity, frequency, and extent of the pain itself;
• the underlying disease process or pathology, if there is one;
• genetic factors;
• people’s attitudes, emotional makeup, and beliefs and the meaning of
the experience for them (for example, an accident victim might associate
pain with a companion’s loss of life);
• knowledge and beliefs about the effectiveness and availability of
treatments;
• environmental circumstances, such as the advice of family and col-
leagues, the burdens of work, other life stressors, and physical aspects
of the home (e.g., stairs); and
• responses of physicians and other health professionals (encouragement
to engage in exercise or other self-management efforts versus suspicion
or denigration of the patient’s coping efforts).
In sum, the pain experience has diverse contributors and wide-ranging effects.
Likewise, there are numerous ways to assess and treat it. A simple medical model,
in which a physician attempts to diagnose, treat, and “cure” the cause of pain,
often is too limited an approach, and the physician applying this approach is
stymied at the outset when the cause cannot be found. Instead, a biopsychosocial
framework takes into account the rich range of potential causes, effects, and
treatment strategies.
Pain care is available in many settings, and a patient’s journey may include
any or all of the following steps, in sequence or in any order and with any number
of repeat visits with the same or new clinicians and advisors:
• self-management, perhaps in consultation with family and friends—
whose prior experience and knowledge, whether accurate or not, will
play a key role—but with little systematic guidance or intervention from
a clinician;
• primary care, where practitioners may employ a variety of management
strategies, including use of prescription drugs and suggestions for exer-
cise, physical therapy, or weight loss, perhaps after some consultation
with specialists;
• specialist care, from a professional in diagnosing and treating an under-
lying disease (cancer, heart disease) causing the pain or from a pain
specialist; and
• a pain center, where an interdisciplinary approach may be offered.
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CARE OF PEOPLE WITH PAIN
Almost every patient is likely to engage in self-management, and almost
everyone—even those consulting with a pain specialist—should benefit from
the involvement of a primary care practitioner (or medical home) who is able
to help coordinate care across the full spectrum of providers (IOM, 1996). Such
coordination of care helps prevent people from seeking relief from multiple pro -
viders and treatment approaches that may leave them frustrated and angry and
worse off both physically and mentally, and from falling into a downward spiral
of disability, withdrawal, and hopelessness. Certainly, fragmentation hinders the
development of a strong, mutually trusting relationship with a single health pro -
fessional who takes responsibility for coordinating care. This relationship is one
of the keys to successful pain treatment.
Self-Management
Self-management is almost always the first step in a person’s journey to
relieving pain, and is one that is returned to repeatedly. Because severe pain
strongly influences virtually all aspects of a person’s quality of life, and because
treatment often is insufficient and involves several specialties and professions,
the burden of controlling pain falls most heavily on people in pain and their
families.
Self-management succeeds partly because it helps patients believe in their
own capacity to control their pain (Keefe et al., 2008). Pain beliefs correlate
with outcomes, and patients function better when they have some control, are
not severely disabled, and avoid “catastrophizing” pain—that is, exaggerating its
threat and believing they cannot control it (see also Chapter 1) (Keefe et al., 2000).
Self-management of pain may be viewed as including both informal efforts
undertaken by people with pain, perhaps following the advice of nonprofessionals
or written or online sources of information, and structured activity, guided by a
health professional or by an established protocol and intended to enhance the
person’s capacity for self-management. In self-management programs, patients
become educated about their condition and active participants in their treatment,
“engaging in active problem-solving, decision-making, developing good use
of health resources, and taking actions to manage their pain” (National Insti -
tute of Nursing Research, 2011, p. 1). To illustrate, back pain self-management
efforts might include brief rests, resumption of normal activities, strengthening
exercises, structured physical activity, application of heat and cold, use of over-
the-counter medications and topical ointments and creams, sleep, yoga, and
caution in lifting and carrying. The following examples illustrate the range of
self-management options:
• A Stanford University program, initially established for patients with
arthritis, includes exercise, muscle relaxation techniques, distraction,
sleep aids, education about pain and negative emotions, and cooperation
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with clinicians and employers (Lorig et al., 2008). This program showed
modest but statistically significant improvements in self-reported pain
but no differences in health care utilization.
• A psychoeducational pain control program for cancer patients, using
coaching by nurses, showed significant decreases in pain intensity
(Miaskowski et al., 2004).
• A self-management program of cognitive-behavioral therapy and diet
interventions for women with irritable bowel syndrome, using advanced
practice nurses, reduced abdominal pain symptoms (Heitkemper et al.,
2004).
• A model program run by pain clinicians from several disciplines encour-
aged new pain center patients to participate in a 2-day, 8-hour group
educational program before individual counseling with a pain special -
ist (for which the two pain clinics involved had lengthy waiting lists).
Patients received information about pain and its treatment and learned
a variety of self-management skills. Half (52 percent) of the attendees
decided to forego a clinical appointment and manage their pain on their
own. Results indicated statistically significant increases in the use of
various self-management strategies and improved satisfaction, as well
as other overall positive effects (Davies et al., 2011).
• Participants in a lay-person-led self-management group intervention
for back pain patients in primary care, evaluated in a randomized trial,
achieved significantly less worry about their pain, more confidence in
self-care, and less self-reported disability (Von Korff et al., 1998).
A substantial body of research supports the effectiveness of such programs.
For example, a meta-analysis of 17 self-management education programs for
arthritis found that they achieved small but statistically significant reductions in
pain ratings and reports of disability (Warsi et al., 2003).
The above examples illustrate that self-management need not take place by it-
self but can be combined with treatment directed by a health professional. To illus -
trate further, pain self-management combined with the use of antidepressants led
to significantly less pain in patients with both musculoskeletal pain and depression
(Kroenke et al., 2009b). A program for cancer patients called “Passport to Com-
fort,” with four education sessions on assessing and managing fatigue and pain,
was found to lead to improvements in physical and psychological well-being
(Borneman et al., 2011). And a program of manual therapy, exercise, and educa-
tion for chronic low back pain showed a significant treatment effect, maintained
at 1-year follow-up (Moseley, 2002). Such combination programs use various
settings and media; a review of rates of participation in arthritis self-management
programs in the San Francisco Bay area showed that small group programs were
most highly attended. Convenience in scheduling and location is also important;
offering self-management programs “multiple times in diverse settings and con-
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tinuously over many years” produced 40 percent participation rates among the
target group (Bruce et al., 2007, p. 852).
For some people with pain, education alone may be the most effective treat -
ment by a health professional. But as Chapter 4 describes, patient education is
no easy matter, especially given deficits in health literacy (see Chapter 2) and
challenges in framing messages that are specific and appropriate to individual cir-
cumstances. For example, the message delivered to an adult experiencing chronic
pain caused by osteoarthritis of the spine should differ markedly from that for a
person with multiple myeloma, for whom a new pain can be a truly catastrophic
harbinger of permanent paralysis.
Primary Care
Primary care is where people obtain accessible, comprehensive, coordinated
health care. The primary care fields of medicine are general internal medicine,
general pediatrics, family medicine, and (in some views) obstetrics-gynecology.
Whether functioning as individual practitioners, in integrated teams of health
professionals, or in what are now termed medical homes or accountable care
organizations with medical and financial responsibility for the health of a patient
population, primary care clinicians provide a wide range of services and assist
people in making decisions about specialty services and elective procedures (see
Chapter 4). Primary care physicians also are responsible for the majority of pain
medicine prescriptions. Indeed, in 2007, analgesics were the drug category most
frequently mentioned in data on office visits to physicians. In 2008, analgesics
constituted 10.1 percent of all drugs prescribed for adults (ranking a close second
to antidepressants, at 10.8 percent) (Gu et al., 2010).
It is no wonder, then, that primary care practitioners are an early step in
the pain care journey, treating 52 percent of chronic pain patients in the United
States based on a national mail survey of primary care physicians, physician pain
specialists, chiropractors, and acupuncturists (Breuer et al., 2010). Typically,
primary care is where people first report pain to the health care system; thus the
primary care practitioner’s response may be crucial in providing timely relief and
preventing acute pain from progressing to a persistent or chronic state (Dobkin
and Boothroyd, 2008). Doubtless, many primary care practitioners become extra-
ordinarily adept at providing pain care, but this is not the uniform experience. As
discussed later in this chapter, patients experience a number of barriers to optimal
pain care within the primary care system.
Specialty Care
Although most people with pain do not need a pain specialist’s care, the poten-
tial demand for these services far outstrips the supply. Approximately 100 million
American adults have common chronic pain conditions, but only 3,488 physi-
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cians were board certified in pain care between 2000 and 2009; thus there are
more than 28,500 people with chronic pain for every specialist (this figure can
be compared, for example, with the U.S. average of 264 patients treated by each
radiation oncologist in 2003 [Lewis and Sunshine, 2007]). As a result, most pain
care must (and should) be provided by primary care practitioners. In a national
survey conducted in the late 1990s, fully four-fifths of people currently experienc-
ing severe pain said they had never been referred to a specialized pain program or
clinic (American Pain Society, 1999).
Organization of the specialty. Pain medicine (the physician specialty of pain
care) and pain care in general constitute a “highly active” field, distinguished by
rising numbers of peer-reviewed publications and professional associations and
interest groups (Dubois et al., 2009). The American Medical Association (AMA)
recognizes pain medicine as a discrete specialty, represented in the AMA house
of delegates by the American Academy of Pain Medicine.
Most pain physicians come to the field from anesthesiology or, to a lesser ex-
tent, physical and rehabilitation medicine, occupational medicine, and psychiatry
and neurology. (The specialty breakdown of pain medicine is discussed in greater
detail in Chapter 4.) Few pain specialists come from primary care disciplines.
This is an unfortunate gap because greater interchange would be helpful given
that, in light of the paucity of pain specialists, the bulk of clinical pain care must
take place either through primary care or through routine medical care provided
by the cardiologists, oncologists, and neurologists who manage most of the care
for people with heart disease, cancer, and neurologic disorders, respectively.
Several health professional associations that focus on pain are influential
sources of information about pain and pain care. Individuals are free to join
as many associations as they wish, provided they meet the qualifications for
membership. Relatively large groups (among which memberships overlap),
with about 4,000 to 6,000 members each, are the American Academy of Pain
Management (consisting of anesthesiologists, chiropractors, physical therapists,
psychologists, and others), the American Society of Regional Anesthesia and
Pain Medicine (anesthesiologists), and the International Association for the
Study of Pain (researchers and physicians, whose U.S. chapter is the American
Pain Society). Somewhat smaller groups include the American Society of Inter-
ventional Pain Physicians (anesthesiologists), the American Academy of Pain
Medicine (physicians), and the American Back Society (physicians, chiroprac -
tors, and physical therapists). Relatively small groups include the American
Headache Society (physicians), the American Society for Pain Management
Nursing, and the American Academy of Orofacial Pain (primarily dentists and
physical therapists).
Certification of pain specialists. Physicians already board certified in anesthesi-
ology, physical medicine and rehabilitation, or psychiatry/neurology can become
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board certified in pain medicine. During the 2000-2009 decade, pain medicine
certificates were issued to 1,874 anesthesiologists, 1,337 physiatrists, and 277
psychiatrists and neurologists, based on a common curriculum and a jointly
developed examination administered by the American Board of Anesthesiology
(American Board of Medical Specialties, 2010).
Practice patterns reflect training. A pain specialist trained as an anesthesi -
ologist is likely to provide different perspectives and treatments from those of
a psychiatrist, neurologist, or internist. For example, a study of medication care
provided to fibromyalgia patients by primary care physicians, rheumatologists,
neurologists, and psychiatrists found no statistically significant differences among
disciplines in outcomes of care, satisfaction, or costs of care, but did find sig -
nificant differences in the types of medications most often prescribed (McNett et
al., 2011). The historical predominance of anesthesiology in the pain medicine
field—for example, many early pain clinics were established by anesthesiologists
using nerve block techniques (Manchikanti, 2000, p. 133)—may affect the scope
of services available to patients.
The confusing state of pain medicine has led some physicians and organiza-
tions to support the development of a new, inclusive pain care specialty not under
the aegis of any particular medical discipline (Dubois et al., 2009). Perceived ad -
vantages of creating an independent pain specialty are a more coherent voice and
the ability to advocate for a consistent training curriculum and promote greater
continuity of care. For example, a unified specialty would be better positioned
to persuade third-party payers to adopt reimbursement practices that are aligned
with best pain care practices. Other than the logistical difficulties, possible dis -
advantages of creating an independent pain specialty might include loss of the
cross-fertilization enabled by the involvement of several specialty groups with a
history of and experience with providing pain care.
Interdisciplinary teams. Ideally, most patients with severe persistent pain would
obtain pain care from an interdisciplinary team, as opposed to a specialist who
might focus on a narrow range of treatments and have a restricted view of how
pain is affecting the patient. The interdisciplinary model incorporates assessment
and diagnosis, not just therapy. It is an integrated, coordinated, and multimodal
approach to care targeting multiple dimensions of the chronic pain experience—
including disease management, reduction in pain severity, improved functioning,
and emotional well-being and health-related quality of life—that is developed
through a comprehensive evaluation by multiple specialists (usually physicians,
nurses, psychologists or other mental health professionals, rehabilitation special -
ists, and/or complementary and alternative medicine [CAM] therapists). In the
primary care setting, the team most often includes a primary care practitioner,
nurse, and mental health clinician. In specialty and tertiary care settings, this team
approach most often emphasizes psychological, pharmacological, and rehabilita -
tion approaches.
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An interdisciplinary approach is hardly unique to pain care. It also is used,
to beneficial effect, in palliative care, rehabilitation, critical care, mental health,
and geriatrics (Paice, 2005). Interdisciplinary approaches for chronic pain have
been supported by numerous studies from many different countries and study
populations, including
• systematic reviews of treatment and rehabilitation for low back pain
(Guzmán et al., 2001; van Middelkoop et al., 2011);
• a meta-analysis of five Scandinavian studies involving low back pain,
using return to work as the outcome measure (Norlund et al., 2009);
• a general examination of chronic pain in the elderly (Corran et al.,
2001);
• a study of costs of treating low back pain in Belgium and the etherlands
N
(Van Zundert and Van Kleef, 2005);
• a Mexican study of patients with noncardiac chest pain, more than half
of whom were found to have psychiatric disorders (Ortiz-Olvera et al.,
2007);
• developers of consensus guidelines on managing chronic pelvic pain in
Canada (Jarrell et al., 2005);
• a study of fibromyalgia treatment (Lemstra and Olszynski, 2005);
• a prospective study of treatment for complicated chronic pain syndromes
in adults (McAllister et al., 2005);
• a study of family satisfaction with care for abdominal pain in children
(Schurman and Friesen, 2010); and
• an examination of a disease management program for people with pain
and psychiatric disorders who previously were treated with opioids
(Chelminski et al., 2005).
Several examples illustrate the effectiveness of team approaches to pain care.
An initiative within the Department of Veterans Affairs is testing the value of
a collaborative support team involving a case manager and specialist consul-
tant, who communicate with primary care providers by their preferred method—
generally e-mail or telephone (Dobscha et al., 2007). Another example comes
from England, where a randomized controlled trial found that implementing a
cognitive-behavioral intervention consisting of up to six group therapy sessions
was effective and cost-effective in managing subacute and chronic low back pain
in primary care (Lamb et al., 2010). A Department of Veterans Affairs intervention
called Assistance with Pain Treatment, led by a psychologist care manager and an
internist, reduced pain among primary care patients through clinician and patient
education, assessment, symptom monitoring, feedback to clinicians, and referrals
to specialists (Dobscha et al., 2009). For pain associated with sickle-cell disease,
useful models include day hospitals and other alternatives to emergency depart-
ments (EDs) that focus on multipronged assessment and continuous, individual-
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ized care (Benjamin, 2008). An example not involving a team per se would be a
strong referral network giving primary care practitioners access to multimodal
treatment resources for direct consultation and for referral of at-risk patients,
including those at psychosocial risk.
Specialists often differ significantly in the ways they practice. Even in
multidisciplinary settings, pain specialists may collaborate actively, or they may
seldom embrace collaboration or may even exclude patients whose pain cannot
be managed through the specialist’s preferred modality or type of intervention.
In any event, given the low numbers of pain specialists, they should serve not
only as direct care practitioners but also as resources to help educate primary care
practitioners about how to assist patients with relatively easy-to-manage pain.
Pain Centers
Primary care physicians and specialists who are uncomfortable treating pain
or whose efforts are unsuccessful may refer patients to pain centers. In a truly
interdisciplinary pain center, a coordinated team of health professionals performs
a comprehensive assessment of the pain problem and its impact on the patient
and family, and then implements a management plan that usually involves sev -
eral therapeutic modalities. These modalities may include medications; physical
therapy; psychological therapies, such as cognitive-behavioral therapy; and other
treatments designed to intervene in the biological, psychological, and social
aspects of the pain experience.
The number of pain centers grew in the latter part of the 20th century, largely
in academic medical centers and other hospital and nonhospital settings, focused
on serving patients with complex pain problems. However, not all care that takes
place in pain centers is interdisciplinary, and some “pain clinics” make no attempt
to provide a broad range of modalities. Indeed, formal criteria do not exist for
defining what a “pain clinic,” “pain center,” or “pain program” is, and thus these
terms can be confusing or mean different things to different providers or constitu-
encies. The Commission on Accreditation of Rehabilitation Facilities currently
accredits only about 122 pain treatment facilities offering inter disciplinary ap-
proaches. Only three of these thus far are veterans’ facilities, despite the Depart -
ment of Veterans Affairs’ important role in pain care. The American Academy of
Pain Management accredits some 46 individuals and centers (American Academy
of Pain Management, 2011). A tightening of accreditation standards during the
late 1990s and 2000s may have led to reductions in the number of accredited
centers, although many centers function without accreditation and refer to them -
selves as “pain clinics,” adding to the confusion. In addition, reluctance on the
part of insurance carriers to reimburse multimodal pain center care can challenge
the viability of some interdisciplinary pain centers.
Outcome data on the effectiveness of care provided by pain centers are
severely limited, whether effectiveness is measured in terms of lower pain severity
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