Recently, there was a discussion on a listserv about functionality, the assessment of it, and an emphasis on the NRS (numerical rating scale-0 to 10). One letter provoked some strong feelings in me which I did respond to; however it is still distressing me. It was from someone working in and knowledgeable about pain and pain management yet essentially there are certain things this clinician just doesn’t seem to get; she stated her belief that opioids interfere with functionality and are basically one of the evils (quoting the old opioid overdose study), complained that non-pharmacological interventions were not being used, and that other medications were under prescribed. Where she “got” me though was within this remark; “Everyone wants to find the best opportunity to benefit this patient population and I do support that further research is necessary to determine best practice.” “This patient population” is not much better than calling people with pain “those people.”
I would suggest until there is a better understanding of persistent pain, people living with persistent pain will many times not get the help they need and the respect they deserve. In truth, there is no single ailment named “chronic pain,” as it is an umbrella term which covers a magnitude of pain syndromes causing or resulting in persistent pain all of which effect people differently and are treated differently. Even within a single syndrome, such as back pain, there are many causes and types. To this point, there should not be a differentiation between persistent pain in a cancer setting versus a non-cancer setting as evidence at this time does not support this notion (in fact no one seems to know how the disconnection came about).
There is belief the disconnection occurred during the time when people who had pain related to cancer were treated as badly as everyone else with persistent pain. The World Health Organization (WHO) may have validated this concept by initially dedicating work on cancer-related pain and then much later making a separate statement, that people with chronic pain have a human right to have their pain relieved as well (of course many times this has not happened).
One of the reasons for the focus on cancer-related pain could be that at that time a cancer diagnosis was most likely a terminal illness — so “why should these people be forced to suffer in pain?” Following this line of thinking, should this differentiation cease to exist, people with cancer and pain would likely be treated as poorly as those of us with non-cancer pain are now. We have already seen that those individuals who are in remission or “cured” from cancer and no longer under the care of their cancer treatment team, yet have persistent pain from the cancer or its treatment, are being denied their “pain medication plan” (e.g. one pharmacist, unless the script is signed by an oncologist, will not dispense opioids; difficulty finding a PCP who will handle the ongoing pain condition).
Because there are so many pain syndromes, diseases which result in pain (inherited and acquired), injuries (trauma, surgical, and treatment related), genetically acquired, and so forth which cause or result in persistent pain, as well as individuals responding differently to pain and interventions, there can never be one “best practice,” one set of guidelines or algorithm. Yes, it is complex; however denying this complexity injures those living with persistent pain.
Non-pharmacological interventions should be part of every pain plan (and while they may not eliminate the need for medication they may decrease the amount of medication needed). Unfortunately the huge stumbling block is financial. Many insurance policies will not pay for any non-medication based interventions at all, limit the ones they will pay for or limit the amount provided (e.g. MaineCare allows six physical therapy visits a year). Non-pharmacological interventions are like medications and pain; people are individuals and respond definitely to each intervention. For me, acupuncture actually made my pain worse where massage therapy is extremely beneficial. I know if I go too long between sessions, I will have an increase in the need for breakthrough medication. My health insurance plan doesn’t pay for any non-medication based pain interventions except for physical therapy, which does little for my persistent pain. So, the best I can afford is one and a half hours every other week and if finances tip the wrong way, not even that. Needless to say, sometimes only opioids are ordered because they are the least expensive intervention and not because that is what the person with pain really wants. What we do want is to have something that will help decrease the pain and help us gain some level of quality in daily lives.
Opioids continue to be vilified; yet they have been relieving pain for over a thousand years (and when you consider endorphins and enkephalins, which occur because our body makes them, even longer). Saying that functionality is affected by taking opioids is what I consider as a form of arrogance-based medicine at its worst. Many people taking opioids can function better (pain interferes with function and cognition) and are able to work. The assumption here that there is a lack of functionality with opioid treatment is what I find troubling. Functionality is dependent on the person’s “pain plan” as well as their level of function without pain. One of the biggest “problem” medications that I commonly hear discussed by people living with persistent pain which interferes with both functionality and quality of life (QOL) are certain antidepressants. Under-medicating or incorrect prescribing of pain medications can severely effect functionality and QOL. Refusing to prescribe at least an opioid trial or continue an opioid treatment plan this is working can greatly effect function. Here is one example to think about:
A 72-year-old woman with a history of three back surgeries was confined to a wheelchair because of pain. Her PCP did not want to prescribe opioids because he “didn’t want to get in trouble.” She went to a spine clinic in another state who verified she was not a candidate for further surgery and gave her a script for 5 mg of oxycodone up to four times a day. With this she was able to use her walker, participate in physical therapy, and had a much improved QOL. When she attempted to get a new script from her PCP, he yelled at her and said she was addicted and they needed to get her off those meds! The scary thing is this physician teaches at the medical school.
In my opinion, the frequent comments made about the side effects of opioids or “we don’t know the long term consequences” used as a reason not to prescribe opioids is a charade. All medications have side/adverse effects; some are much more dangerous than opioids (e.g. NSAIDs). People with persistent pain just want to have some QOL; they do realize their pain will likely not go away entirely so it is a matter of risks vs. benefits. At least, the option to choose should be made available.