Similar to standards of beauty or taste in wine, pain is an utterly subjective experience. Only the person in pain knows precisely what that pain feels like. Yet, to treat pain effectively, healthcare providers need to have an understanding of how bad a patient’s pain is, even if they may never know what it truly feels like to the individual who is suffering.
Traditionally, clinicians have asked patients to rate their pain on a scale of 0 to 10; you may have seen a similar scale featuring a row of faces, ranging from “no pain” with a smile to “hurts the worst” with tears. Rating forms often share some benchmarks to help navigate the scale. For example, a form may state: “Zero represents no pain at all and 10 is the worst pain you can imagine.” But that system has not proven all that helpful. Is an annoying ache that keeps you up at night a 5? A 6? Does pain that makes it difficult to sit at your desk an 8? If the pain goes away when you get up and walk around, should that average out to a 4? And how much pain can you imagine, anyway?
Because of the subjectivity of pain, these types of pain-scale ratings do not give doctors enough meaningful information. “Two people can report a 7 to 10 level of pain,” says Ravi Prasad, PhD, clinical professor of pain psychology at the University of California Davis. “For one person this means being able to stay at the gym for only a couple of hours. For another, it means staying in bed all day.”
Why the Scales Are Changing
While pain is an attention-getter like no other, it doesn’t happen in isolation. “There’s a wide range of contextual factors that affect how pain is experienced,” says Dr. Prasad. “Pain is more than physical sensations; it is influenced by what else is going on in life.” Depression, anxiety, and other emotional stresses can make pain worse, for example.
Kevin Zacharoff, MD, a clinical professor of preventive medicine at SUNY Stony Brook School of Medicine in New York, agrees. “Someone who has lost a job or a loved one feels pain more severely,” he says. On the other hand, pain can actually lead to depression, anxiety, and stress.
To untangle all these factors, physicians need to “understand where pain fits into someone’s life,” says Mark D. Sullivan, MD, PhD, a professor of psychiatry and pain medicine at the University of Washington School of Medicine. Many doctors have decided to ditch the numerical pain scale altogether. Instead, they are trying to focus more on the patient’s ability to function. In other words, they try to find out how the pain may be interfering with things the patient wants to do or achieve in daily life.
The assessment of functionality is less subjective than the traditional numeric scale. But that’s not its only advantage. It’s also patient-centered. Patients, not doctors nor some arbitrary number, assess how pain affects their lives. “I often speak about context,” says Dr. Zacharoff. “A 70-year-old retired person may just want to be able to play golf. A young mother might want to be able to care for her children. Someone else may need to be able to work.” Being able to do those things—not merely removing the pain—is the true goal of pain management for most patients living with a chronic condition. “If people can’t work, can’t take care of their children and can’t do the things that matter to them, whatever those things are, they may feel bad about themselves,” he adds. “When they meet these milestones, they will perceive that the quality of life has improved. It seems to me as if this is what everyone is asking for.”
The International Classification of Diseases (ICD) is the system of codes that providers use to classify diagnoses for medical records and insurance purposes. The system undergoes periodic updates and the most recent version—the ICD-11—was approved to take effect in 2022. The new edition will mark the first time there is a systematic coding structure for chronic pain. For clinicians, this change will simplify things in a number of ways. The benefit to patients is that doctors will have a clear and useful way to categorize pain.
Joachim Scholz, MD, served as a member of the Task Force for the Classification of Chronic Pain of the International Association for the Study of Pain. In an article for PPM, he writes that, within the new system, “Pain severity will be implemented as a compound measure of pain intensity, pain-related distress and interference with daily activities.” At long last, the effect of pain on daily activities will be an official part of the diagnosis and classification of pain.
Even with the new codes, getting at how pain affects daily life is not something a doctor can do by physical examination alone. “The motivation or participation of patients is key to the success of treatment, but patients often take a passive approach,” explains Dr. Zacharoff. “They tell their provider about their pain, [accept a prescription for] given meds, and expect to get better.” But that’s not now it works. “Patients need to be a part of the treatment plan.” Still, he says, that may be hard to do if your doctor still uses a 0 to 10 rating scale. In other words, just as patients should take a more active role in their pain management, clinicians also need to change the way they interview—or ask questions of a patient—and this shift from using traditional scales to a focus on function will take time.
Some years ago, there was a trend toward considering pain as the “fifth vital sign,” along with blood pressure, temperature, pulse rate, and respiration rate. This view meant that patients were often asked to rate their pain even if pain was not related to the reason they came to the doctor—a rash or a cold for example. This led to what Dr. Zacharoff calls “pain fatigue” on the part of providers. “If we ask every single patient that question, we ask that question hundreds of times a week,” he says. “It becomes like a car alarm. We no longer assign it any meaning.”
There is a way to break through the sound of the alarm, to communicate pain in a meaningful way. But you have to be prepared to present a specific and detailed description of how your pain affects your life—and as a patient, you need to take charge of that description.
There’s an old joke that goes something like this: a patient has just had a major operation. He asks his doctor if he will be able to play the violin once he’s recovered. The doctor replies, “Of course.” The patient says, “Great. I couldn’t play before.”
Some newer pain questionnaires try to get at functionality by asking patients what activities they cannot do because of the pain. These can include things like hiking or biking. But if you didn’t participate in those activities before you had pain, and cannot do them now, it’s important to let the doctor know that for context. “It’s more useful,” says Dr. Prasad, “to saying something like ‘I used to pick up my kids at school, but I can’t anymore because I can’t sit in the car that long.’”
Soon, there will likely be more questionnaires used by clinicians that attempt to assess function as it relates to pain, so it’s important to prepare for navigating them. For instance, let your doctor know about things that may be affecting your life that may not seem directly related to the pain. If you’re struggling with personal problems, are worried about a loved one, or have another source of stress or unhappiness in your life, tell your doctor. By helping you deal with those problems, your doctor may be able to treat your pain more effectively.
Healthcare providers are increasingly moving away from a pain-scale rating to a more nuanced path of how pain affects patients’ day-to-day. But if that approach is going to work, it needs to be a two-way street. Patients must take a lead role to make sure they communicate clearly with their doctors about how their pain affects their lives.