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 organizations, 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 testimony 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 testimony 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 magnitude 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



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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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294 RELIEVING PAIN IN AMERICA 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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295 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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296 RELIEVING PAIN IN AMERICA 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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297 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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299 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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300 RELIEVING PAIN IN AMERICA 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.”