Reading Janice Lynch Schuster’s tormented account of her persistent pain and her journey through the medical maze of care in the July issue of Health Affairs, I’m reminded of how millions of Americans are living with not one, but two, pain challenges. The first is the epidemic of over-prescription; the second is the condition of endemic under-medication.
In her essay “Down The Rabbit Hole: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use,” Schuster herself hints at the dual issues when she writes: “pain patients like me often feel trapped between the clinical need to treat and manage pain and the social imperative to restrict access to such drugs and promote public safety.”
People coping with chronic pain confront a double-faced problem: a society simultaneously providing too much relief and too little. Which face of the American pain dilemma any patient will experience depends on where they live, who they are, and what kind of practitioner they encounter in their pursuit of relief. As Schuster writes, the situation is perplexing, maddening, and sometimes arbitrary.
On one hand, Schuster describes the world of abundant relief: the oral surgeon, whose “minor” procedure likely aggravated her condition, was content to prescribe first Perocet, then Norco, and then other medications. On the other hand, there is the surgeon’s assistant – reluctant to call in refills as the pain persisted, with patient, doctor, and pharmacist all aware of the complex surveillance system that attempts to guard against overuse, addiction, and drug dependency.
Decades of a Double-Faced Pain Problem
This double-faced problem of regulating pain care has been around for decades. Thirty years ago, long before the latest Institute of Medicine report calling for a “cultural transformation” in pain policy, reports bemoaned “the irony of our age,” that “millions of Americans in hospitals – late-stage cancer patients, burn victims, accident victims – were suffering unnecessary, sometimes agonizing pain,” while millions more un-hospitalized pain sufferers were “dangerously overdosing” on painkillers often inappropriately prescribed for their pain. Much has improved in pain care since the 1980s, but the dilemma persists.
Importantly, the dilemma of pain policy has not only victimized patients, it also holds hostage health care practitioners, policy makers, and health care reformists. Public and professional attention tends to swing back and forth from one end of the extreme (overmedication) to the other (under-treatment). In the 1990s, for example, when Oregon’s Death with Dignity law was passed and the concept of compassionate end-of-life pain management commanded public policy attention, the focus was on liberalizing pain management.
But in the new millennium, as the country faced a rise in prescription drug abuse, attention has shifted to controlling OxyContin and other opioid addiction. So practitioners and policymakers too are, in Schuster’s words, “swimming against two tides,” pivoting wildly, sometimes frantically, from trying to solve one aspect of the pain problem to tackling the other.
Separating these two challenges is not easy. The issue of under-treatment of chronic pain was much more pronounced, say, a half-century ago. When Rosie Page, a woman suffering from chronic arthritis pain, pleaded her case for disability in the early 1960s, the very idea that pain could be legitimate and disabling was shockingly new.
What followed in the next two decades was a major cultural transformation – the rise of pain clinics, the recognition that patients’ perceptions of pain should matter enough to at least stand on par with physicians’ beliefs and concerns. In these early battles, the work of physician-reformers like Russell Portenoy was crucial.
Nevertheless, under-medication has persisted, particularly at times when (or places where) concerns about addiction have intensified. In my research on sickle-cell disease and its related pain, I came across countless examples of sufferers and their advocates protesting, “Before you can get past the agony, you have to get a doctor to believe it’s real.”
Occasionally, legislators and disability judges have tried to ensure better access to pain care by laws protecting physicians from punishment for catering to people in pain, even if it meant aggressive use of opioids. These Intractable Pain Treatment Acts had many positive, but also mixed results.
The Role of the Pharmaceutical Industry
The issue of over-medication has different roots. Here we must acknowledge that the role of pharmaceutical industry has been potent. Indeed, the history of chronic pain — with numbers rising as society ages — is filled with drug company promises of fast relief without dependence, and practitioners and physicians willing to give the latest medicine a shot. Percodan, DMSO, Miltown, Vioxx, and so on. The list is long.
Many found relief, and many were victimized, all in pursuit of the search for the perfect non-addictive opioid. It is a sign of the desperation of many people in chronic pain that they may place trust in anyone offering to take their pain seriously and relieve it fast. In such a situation, people in pain and the caregivers worry constantly about the line between true relief and victimization — by well-meaning physicians, by purveyors of the latest drug remedy, and by the drug itself.
To add to the complexity, as pain was increasingly recognized as a legitimate health concern, the specter of over medication grew. The drug industry contributed to the problem, with pharmaceutical advertising supporting the cause of the undertreated.
How much of this two-sided problem can be solved by better medical education is doubtful, for physicians themselves are caught in a similar web of influences and surveillance. The persistent problems of over-prescription and under-medication echo a deep cultural challenge in America – on one hand, the pressure to medicate in a system set up to foster consumerism, and on the other hand, the challenge of addressing poor access to basic, compassionate relief for vulnerable patients.
“Down the Rabbit Hole” also hints at other problems worth addressing, including the need for non-medical forms of pain management. But above all, Schuster provides a vivid example of why we must begin to see the opioid maze as two separate, yet intersecting issues – and to recognize that both desperately need reform.