Dangerous Confusion on 'Painandsuffering'

Treating "pain" and "suffering" as synonyms (or even a single word, "painandsuffering") has led to major problems with pain management.

Mark Pew

September 9, 2016

What is pain? According to Merriam-Webster, it is "the physical feeling caused by disease, injury or something that hurts the body." Which is different than suffering: “to become worse because of being badly affected by something." Often, these words are treated as synonyms (or as a single word, "painandsuffering") when they are actually quite different. Pain is what happens to you. Suffering is how you handle it. The confusion of these two terms can create issues. The American Pain Society in 1996 described "pain as the fifth vital sign" (giving it equal status with blood pressure, heart rate, respiratory rate and temperature). The phrase created a perfect storm because it coincided with the message being delivered to medical schools and the healthcare industry that doctors had an opioid phobia and were under-treating pain. That was followed in 2000 by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) establishing standards for pain assessment and management. Then the Veterans Health Administration incorporated the new emphasis into its national pain management strategy. So, regardless of where a patient was treated and by whom, the (subjective, patient-driven) assessment of pain was one of the first questions asked and often drove treatment plans. Then the new approach began to be questioned. A 2006 study by the VA found quantifying pain "did not increase the quality of pain management." In June 2016, the American Medical Association recommended removing "pain as the fifth vital sign" and connected the idea to the beginning of over-prescribing of opioids. Opponents of the change say it will "make it even more difficult for pain sufferers to have their pain properly diagnosed and treated." Proponents of the change say "pain is not a vital sign, but more of a symptom, and cannot be measured." So far, pain is still the fifth vital sign. See also: Health Startups Go After 3 Pain Points The biggest problem is unrealistic expectations - patients often are told or come to believe they will be pain-free. When they're not, and their condition becomes chronic, it sows doubt in the mind of both the patient and clinician. The second biggest problem is that often the circumstances beyond their physical pain is ignored. I am convinced that dealing with what happens between the ears and at home is as important as what is physically wrong with the body (i.e. the biopsychosocial model). So how is "pain as the fifth vital sign" measured? Sometimes it's a scale of frowny face to smiley face. But often it's a comparative pain scale, from 0 to 10. The Health Organization for Pudendal Education (HOPE) offers the best description:

0 - No pain - Feeling perfectly normal.
1 - Very mild - Barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time, you never think about the pain.
2 - Discomforting - Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.
3 - Tolerable - Very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain. You have adapted to it.
4 - Distressing - Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe really hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails and squeezing hard. Note how the simulated pain is initially piercing but becomes dull after that.
5 - Very distressing - Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that your normal lifestyle is curtailed. Temporary personality disorders are frequent.
6 - Intense - Piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point, you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.
7 - Very intense - Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point, you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.
8 - Utterly horrible - Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a really bad migraine headache.
9 - Excruciating, unbearable - Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent because there is no more joy in life whatsoever. Comparable to throat cancer.
10 - Unimaginable, unspeakable - Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss have experienced level 10.

How many times have people said their pain is a 9 or 10 (or a 47) when they're conscious, sitting upright and drove themselves to the doctor's office? I have seen that manifold times in hundreds of chronic pain workers' comp claims since 2003. But it's easy to succumb to that kind of self-assessment ... I had the flu in February and went to a CVS Minute Clinic. One of the initial questions the nurse practitioner asked me (having been prompted to do so by her practice management software) was my level of pain. I truly felt miserable -- body aches, high temperature, sneezing. For a brief moment, because I wanted to ensure a prescription of Tamiflu, I wanted to catastrophize ("an irrational thought a lot of us have in believing that something is far worse than it actually is") and say I was a 9 or 10. But then I remembered all the times I had argued against that approach. And I remembered exactly what a 9 or 10 meant. So I resisted the urge and gave myself a 5 rating. I still got the Tamiflu that started the journey to recovery. See also: Better Outcomes for Chronic Pain Pain is complicated and individual, so there is not a single answer for quantifying and treating it appropriately. However, I have three high-level suggestions:

Re-calibrate the scale. The clinician should educate patients on the true meaning of 0 through 10 and help them decide on a lower number that better describes their pain. That would require an actual dialogue between the clinician and patient. I understand that pain is unique and personal. But if patients can convince themselves their pain is a 6 instead of a 10 (or a 47), then managing it seems much more achievable.
Be honest. If there is going to be residual, chronic pain, the patient should know it. And own it.
Manage the pain. In my opinion, "pain management" is a term that is often misused. You can't manage your pain if you're comatose (i.e. sedated on opioids, benzos, muscle relaxants, et al.). Yet we often see "pain management" as a series of pills or injections that are passive and repetitive (in some cases, I think pain management clinics have become "addicted" to the repeat office visits). At some point, patients need to manage their pain rather than allowing the pain to manage them, and be taught how to do that. That could mean yoga, an active lifestyle, better nutrition, biofeedback, proper sleep hygiene, deep breathing exercises, mindfulness, volunteer work or any number of other methods in combination or isolation that work for the patient. The key is an internal locus of control ("he or she can influence events and their outcomes").

I'm not saying pain isn't real. For those dealing with chronic pain, it is very real. But I've chatted with and observed too many people with significant chronic pain who overcome it on a daily basis to live productive and happy lives. I know that chronic pain does not have to win. Instead, we need to re-define pain, re-define suffering and help people take back control of their lives. I will finish with this wisdom from Dr. Stephen Grinstead: