Caroline Huang is the Director of Development for Sense and Sustainability. She is a doctoral student in Public Health at the University of Oxford, where she is a Rhodes Scholar. Her research examines ethics and communication in healthcare on topics such as breast cancer gene mutations, informed consent, and concussions in sport.
Pop quiz time: What debilitating, expensive public health problem affects an estimated one in three adult Americans, or 116 million overall? The surprising answer is chronic pain, which afflicts nearly twice as many people as coronary heart disease, stroke, cancer, and diabetes combined and contributes to up to $635 billion lost in productivity and medical expenses each year.
Until the Institute of Medicine (IOM) issued a sobering report examining pain from a public health perspective in June, the magnitude of the inadequacies of our current pain management system and the ramifications to our society were largely ignored. In the wake of the report, we’ve seen studies published on social effects of chronic pain, such as the effects of spousal support on pain management; increased attention paid to neuroscience research indicating that brain structure may change in response to chronic pain, and that such change might be reversible with proper treatment; and countless articles written about the challenges of maintaining patients’ access to pain medicine while addressing painkiller overdoses.
The underlying theme has been the need to reform pain management, to both help patients and reduce healthcare spending. Future high-level changes to address the chronic pain epidemic might include increased emphasis on coordinated case management, long-term investment in regulating and developing better pharmaceutical treatments and diagnostic tools, and cultural shifts affecting the ways in which we integrate alternative medicine, Western medicine, and lifestyle adaptations.
However, these changes could take years, if not decades, to fully implement; in the interim, we also need to focus on how to help patients now. We can start by encouraging chronic pain patients and providers to have realistic, if somewhat uncomfortable, discussions about quality of life.
Chronic pain is typically invisible and can’t be quantified neatly in blood work or physical examination, meaning clinicians are hard pressed to objectively evaluate patients. As such, providers need to focus on frequent solicitation of the patient’s individual view on managing pain, similar to Amol Verma’s arguments in his post about dialogues surrounding end-of-life care. Given that chronic pain can languish for decades left untreated (or treated ineffectively), these quality of life conversations take on an added importance, even though there is a less finite timetable than that associated with end-of-life care.
As a chronic pain patient myself, I distinctly remember how unprepared I was to grasp the concept of unremitting pain at age 15, and how unwilling many doctors were to engage in conversation about my individual experience and preferences. Like many teenagers, I was familiar with typical acute medical problems. If you break your arm playing soccer, you follow a prescribed path: You go to the emergency room. You have an x-ray done. You get the bone set. You have a cast applied. You wait several weeks or a couple of months, pending doctor’s approval and depending on the severity of the break, and you’re set to return to the field.
For chronic problems, especially the invisible ones, the route is much less obvious. You try a variety of medications and continually adjust the dosages. You go to endless physical therapy sessions. You see more specialists than you can count on two hands. You try acupuncture and massage. You sometimes cut out after-school activities or cancel plans with friends because you’re just too exhausted to engage socially. After a while, you hopefully settle on some combination of treatments and lifestyle alterations.
It’s a less sophisticated system of trial and error than anyone is comfortable admitting, and it’s certainly not a financially, emotionally, or mentally sustainable cycle to deal with long-term. Couple that with the difficulty in having to explain something as unpredictable as chronic pain to friends, family, and colleagues, and it is completely unsurprising that chronic pain patients have triple the average risk of developing symptoms of mental illness. Likewise, depressed patients have triple the average risk of developing chronic pain. Talk about a vicious cycle, especially for those without a good support system.
In my case, it was three years before a physician asked what I consider the “right” question: “Supposing that we can’t make your life pain-free, what do you consider most important?” It was an easy answer. Mental clarity, I said. At the time I was having trouble shaking the fuzziness that came with taking a combination of muscle relaxants, over-the-counter medications, and occasional narcotic painkillers. Since that combination still wasn’t treating the pain satisfactorily, I just wasn’t willing to bear the associated mental fogginess.
The clinician, a respected pain specialist, was open to the idea that my personal health goals might be different than the ones he would envision based on my chart. And to his credit, he worked with me to develop a treatment plan that fit those goals. It wasn’t perfect by any means. But I could live with painful clarity, and I was tired of hazily drifting in a muted world.
If we are to control costs while maintaining high-quality care, this kind of dialogue is essential. Not every patient will make the same choice as I did, and obviously some aspects of treatment will be dictated by the patient’s particular presentation – but that does not mean that clinicians should not strive to satisfy a patient’s unique health goals.
And if we can learn to have these difficult conversations about chronic pain, we can perhaps apply the same concepts to other intertwined chronic conditions as well, such as diabetes (an estimated 60 to 70 percent of patients develop neuropathic pain). While frank dialogue alone does not guarantee a completely pain-free existence, it can lead to an improved quality of life. In the absence of fully developed neuroimaging technology that renders pain visible, such as the kind being developed at Stanford by Dr. Sean Mackey, it may be our best and most cost-effective option.