Publications
APS Bulletin • Volume 9, Number 5, September/October 1999
President's Message
What Should We Tell the Public to Do
Russell K. Portenoy, MD
The public’s interest in pain management continues to grow, and it seems that new stories in the print media or on radio or television appear every week. The coverage pertains to many issues. Pain is a thread that links a variety of health concerns, including the impact of disability, the care of patients with advanced medical illnesses, the societal preoccupation with drug abuse and addiction, and the specific needs of patients with headache, arthritis, low-back pain, and other prevalent problems. The public wants information about the state of the art and the future of pain management, and reporters seem eager to highlight the new and controversial aspects of this field.
APS pain survey
As president of APS, I am asked to do a fair number of interviews; this year has been particularly busy because of the dissemination several months ago of the APS-sponsored telephone survey of patients with moderate-to-severe pain. This survey included information from 805 people drawn from a national mail panel of more than 500,000 households. The interviewees were adults who had been suffering from noncancer-related pain for at least 6 months and who reported that pain severity was greater than 5 on a 10-point scale. Fifty-six percent of the respondents had had pain for more than 5 years, and 41% of them described their pain as “out of control.”
These statistics reveal the terrible impact of chronic pain and suggest major problems with the healthcare system’s response to pain. More than two-thirds of the respondents reported impairments in their ability to function physically, to sleep, and to socialize when their pain was moderate or severe. Almost all had sought relief from a doctor, often with inadequate results. Almost half changed doctors at least once, and almost one-quarter changed three or more times. Few were being treated by pain specialists. Indeed, 68% of respondents with the most severe pain had never been referred to a specialized program or clinic for pain.
This survey generated a great deal of media attention. Along with the expected questions about new therapies and the changing role of opioid drugs, much of the media’s questioning focused on the remarkable finding that patients with the most devastating pain-related problems were seldom evaluated by pain specialists. The most common question reporters asked was offered from the perspective of the sufferer: What should someone do if pain persists despite the best efforts of a primary care provider?
The simplest response (and the trendiest) would have been to suggest that patient empowerment is the answer: Things will improve if patients advocate for referral on demand to pain specialists and demand that insurance cover pain management costs. This answer, which was expected from the president of APS, is true but incomplete, given the complexities of the healthcare system and the field of pain management. These complexities, combined with the limited availability of pain specialists, create a very challenging situation for patients. To educate the public, the nature of this challenge should be communicated.
Pain practice variability
Consider the state of the specialty. Pain specialists offer care in very diverse settings, which may be private, affiliated with hospitals, or university based. The physicians involved may be anesthesiologists, neurologists, psychiatrists, or physiatrists, among others. The physicians may work in a group or in solo practices. A group practice may or may not represent multiple disciplines.
Although pain specialists generally endorse the use of a multimodality therapeutic strategy implemented by an interdisciplinary team, for a substantial subgroup with pain and pain-related disabilities, there is no uniformity across programs. Some pain programs may or may not require patients to undergo assessment by nonphysician members of the interdisciplinary team, such as psychologists or physical therapists. Others may have psychologists, social workers, physical therapists, occupational therapists, and others integrated into systems that facilitate cross-referral and interdisciplinary communication. Some commonly create ad hoc teams from referrals to specialists outside of the practice, usually with limited communication among the professionals involved. Still other pain specialists manage most of their cases independently, usually applying a limited set of interventions.
Variability in the structure of pain practices is reflected in very different patterns of treatment. Some pain programs offer defined care plans that are time-limited and closely supervised. The focus of such programs may primarily be on functional restoration, rather than on pain control, and they may or may not offer a full array of noninvasive and invasive analgesic modalities. Some programs are similarly focused on rehabilitation issues but do not offer prescribed care plans. Treatment is open ended and may consist of a variety of analgesic interventions, including those intended specifically to improve functioning.
Many pain practices emphasize the use of analgesic interventions and focus less on comorbid conditions that may contribute to disability. The analgesic interventions that are available differ across practices, and practices that have the same interventions available often recommend them with strikingly different frequencies.
For example, patients may be offered aggressive management with analgesic drugs, but the specific strategies recommended vary with practitioners’ skills and their willingness to try evolving or unconventional therapies, such as opioids, compounded topicals, and brief infusions. A specific practice may or may not offer other noninvasive or minimally invasive therapies, such as transcutaneous electrical nerve stimulation or physical therapy modalities, or referrals for cognitive therapy, acupuncture, or other complementary approaches. Many programs offer a broad array of invasive therapies, including nerve blocks, spinal cord stimulation, and neuraxial infusion. Neither the indications for these therapies nor the specific approaches used in implementing them are standardized across pain programs.
This complexity in the real world of pain management ensures that patients with similar problems can receive very different recommendations for specialized care. The reasons for this may be difficult to explain clearly and probably include referral biases, limitations in the science of pain therapy, and troubling variations in professional training and financial incentives for specialists. Such practice variation is something pain specialists must confront, particularly as the emphasis on outcomes and evidence-based medicine grows.
For patients, the reality is that a simple request for referral to a pain specialist may or may not yield a program that offers a therapeutic approach best suited to their particular needs. Patients or referring physicians may not understand this potential for mismatch.
Systems issues further complicate the referral process. Access to a pain program, the various providers within a program, or the specific therapies recommended by a program cannot be taken for granted in a healthcare system with such a wide array of reimbursement approaches and in which the role of managed care continues to expand. Again, the simple recommendation to seek referral to a pain specialist does not address the realities that patients encounter.
So what response can we offer when a representative of the media seeks guidance on behalf of individuals with unrelieved pain? What should someone do if pain persists despite the best efforts of a primary care provider?
No simple answer
A part of the response is to acknowledge that there is no simple answer. Pain management certainly is a bona fide specialization in medicine and other disciplines, and referral for specialized care clearly is appropriate when patients have pain or pain-related comorbidities that are beyond the capacity of good primary care. The specialty is quite young, however, and the existence of practice variation is not surprising given the heterogeneity of the pain population and the diversity of disciplines involved in treatment. Although the extent to which other negative factors, such as the lack of a firm scientific base, economic instability, incentives that skew therapy, and limitations in professional credentialing and accreditation affect this variation is not known, the potential for this influence should be stated as a concern for both the profession and the public.
The call for greater access to pain specialists also might be well served by supporting the valuable role that primary care providers could play in ensuring a match between patients and pain programs. It is not enough for referring clinicians to know that there are pain programs in their communities. They should have some understanding of the structure and function of these practices and use this understanding to inform the referral process and help educate patients to be realistic in their expectations. This can be of great reciprocal value to specialists.
The public should be empowered, through the media, to demand access to pain specialists for the treatment of persistent and disabling pain. Such empowerment, however, requires open discussion of the complexities of the system of specialized care. Patients should be informed about variations in practice, demand information and appropriate referral by their primary care providers, and learn about the range of therapeutic strategies that are employed by pain practices in their communities. It is hoped that access to such information, combined with realistic expectations, will enhance outcomes and patients’ satisfaction with outcomes.