See also – On the Record: I Must Get This Off My Chest! – Part One
I am so tired of professionals, the media, and the public constantly linking opioids and addiction with little evidence to support this. There may be correlation; however correlation does not equal causation. The link between people living with pain taking opioids and diversion/addiction is also tenuous at best. My husband teaches statistics and the example he uses for this is a Florida study which found when there is an increase in new boat licenses, the number of manatee deaths increased. You can say there was a correlation but you cannot call it the cause as licenses do not kill Manatee. The studies on overdose deaths related to opioids are poorly done:
Pain Treatment Topics News and Updates are no longer updated however the information is still there for access on the blog. It says, “Our mission is to serve as a noncommercial resource for healthcare professionals & their patients, providing open access to clinical news, information, research, and education with a focus on better understandings of evidence-based pain-management practices.” It is well worth your time to check it out. Almost always, negative opioid comments or practices are based on anecdotal evidence, opinions, or based on poorly done or interpreted research. A while back, an educational organization started offering a certificate for “Chronic Pain and Addiction Medicine,” once again singling out the entity called “Chronic Pain” and pairing it with addiction. Things like this pairing reinforce the public’s perception. When someone refutes these issues with the media, the correction rarely is published (e.g., the addiction physician comment, “that is a myth I thought everyone knew had been busted,” on a previous article which said; “people taking opioids for pain rarely become addicted” will be what people remember because the rebuttal was never printed).
Acute pain needs to be managed well also; poorly managed acute pain can lead to persistent pain. Many times when function is not improved or maintained with acute pain it will become a long term functionality problem. While there are some who are very knowledgeable about persistent pain, the majority of providers are not (unfortunately this includes some who actually run a pain service).
Education in schools remains poor. When education is required for licensing it is usually restricted to Risk Evaluation and Mitigation Strategies (REMS) programs, addiction, end of life pain and maybe cancer pain. The media focuses on the sensational. The public is many times misinformed by the media through both news and fictional shows. Similarly, people who have persistent pain can be poorly educated. I have read in some very scary opinions on online discussions which are given as fact and or at times framed as “this is what my doctor says.” The media experts interviewed or quoted are nearly always involved in addiction medicine, psychiatry, or anything but pain management or palliative care.
There has to be an effort by those of us in pain management as well as those of us living with persistent pain to educate our professional peers, the media, and the public; to hold them responsible when they make comments which are not based on research or fact. The worst is when it is an outright lie or their own warped personal opinion. For example:
- the doctor who says that Pain as the Fifth Vital Sign was started by a pharmaceutical company to increase sales of their opioids
- someone who has been on a stable dose of opioids for five years is now told she is addicted
- “those people need to learn we can’t take away all the pain”
- “he likes his pain medicine a little too much”; and, of course,
- those that refuse to stop using the term narcotics when referring to opioids
When the IOM’s Consensus Report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, was released we were elated. Finally we would be getting somewhere. Unfortunately the document and those who created it have been besmirched by others who maintain their bias against people with pain. Some said the contributors were tools of the pharmaceutical companies others just denigrated the content, especially the numbers. My all-time favorite for loathsomeness was the newspaper headline “Commentary: Exaggerating our pain” and the subtitle of “A report on chronic pain screams misleading data and conflicts of interest, medical experts say”. The article content that followed was equally as repugnant and misleading.
Removing the lies and lack of evidence that currently tarnish care of the person with persistent pain is long overdue; we need to look most importantly at quality of life (QOL). Overall care should be based on the four domains of QOL: Physical Well-being, Psychological Well-being, Social Well-being, and Spiritual Well-being (these are tenets of palliative care). Multimodal, integrative pain care fits into this model of care quite well, even though some have tried to bastardize it by saying “multimodal = no opioids” or even “no medication”). Integrative care includes medications usually (but not always); can be with or without opioids in combination with non-opioids that allow not only for a synergy of effect. Mixing in pain treatments which include non-pharmacological interventions, strategies to address mobility issues, psychological issues, as well as social issues (such as can the person afford the intervention, is there transportation, etc.) are paramount. Caring for the person with pain needs to involve the whole person which does NOT include stigma or discrimination, such as making them out to be a liar or criminal. A neurologist who has a pain clinic once asked me “why are there so many mental problems with pain patients”. I said I didn’t think there was more than the general population; it would be material for a good study. He said, “Then why do I get all the crazies?”
The brilliant Margo McCaffery wrote in 1968, “Pain is what the person says it is and existing when he says it does.” She was ridiculed and disparaged at that time for believing this. She prevailed as it became a key clinical definition, taught in medical and nursing schools throughout the world. She also said she would rather be fooled by ten people than let one person suffer in pain. Unfortunately the trend over the last ten years has been in the opposite direction. People would rather ten people be in pain than be fooled by one person. Many times you hear, “I know we are supposed to believe people when they say they are in pain, but…”, “they couldn’t be in that much pain,” “people this far out from surgery don’t have pain,” “if her pain was 10 she would be dead (one of my all-time favorites from a surgeon), “she isn’t trying to get workman’s comp; I wonder what her angle is” (about a woman with a 3 month old who had terrible pain secondary to an epidural placement during child birth), and so forth.
So how do we change a paradigm which consists of weak research, unchallenged characterizations, prejudice and bias, arrogant opinions, a media which does not seem to be into truth and justice, and an indifferent public (until they or a loved one join those who have persistent pain and sometimes not even then)? There are many who are knowledgeable, caring health care providers as well as over 100 million living with persistent pain (even if some do not believe that number or in the IOM’s report). Here is my list:
- Stop using the term “Chronic Pain” and educate those who continue to do so. This means also not differentiating between cancer and non-cancer (asking for evidence to support there is a difference) and observing there are many syndromes and diseases resulting in persistent pain. Even persistent pain in a cancer setting has more than one cause or etiology. The term “Chronic Pain” has become similar to some racial epitaphs in that there are too many incorrect associations, biases and prejudices. Using the term persistent or ongoing pain is far more accurate and less disparaging.
- Institutionalize healthcare professional education related to persistent pain. This needs to occur not only in schools but in mandatory continuing education as well. Companion information must be offered in an understandable form for the general public. It should include:
- Pathophysiology, the many different syndromes, acquired, diseases, and genetic related;
- Improve knowledge of all medication especially related to pain management; pharmacodynamics, pharmacokinetics, pharmacokinetics, adverse effects (as well as prevention of adverse effects), synergy of medications, and affordability of medications.
- Interpretation and evaluation of research findings; comprehending “risk” or “likelihood” does not equal causation. We need to hold others accountable who present opinion or weak research as proof; this includes professionals and peer reviewed journals as well as the general media.
- Hold the media accountable for biased reporting, like when they:
- Use “experts” who are not experts in pain management. When names are listed without their specialty or a biography is not made available, this does little to keep the public well informed. The average person may not understand the opinions are biased by the nature of that perspective without sharing the voice from those who are true experts on pain and pain management (even if they profess to others that they are);
- Taking comments from pain experts out of context or selectively quoting;
- Reporting studies without identifying strength of evidence or what weaknesses it may contain (such as small size, data mining, inadequate conclusions); and incorrectly saying a study “proves” something when is often far from the truth.
Reminder to all readers: One person responding or commenting back to media coverage many times tends to be ignored by the media; many commenting just may get their attention.