Pain Patients Should Come First

By Janice Reynolds, Guest Columnist

In the media, the persistent pain patient should always come first -- before the stories of addiction, overdoses and the inferences of poorly done studies linking the two with pain treatment. 

Most important is the professional relationship between provider and pain patient.  There needs to be therapeutic discussion between the two as to the nature of the pain, how it affects the person’s life, as well as what’s been tried and worked, and what has not worked. The goal should be a multimodal pain plan which works for the patient as well as being affordable.

The risk of addiction should be a concern, but not at the forefront.  Those seeing addiction as an “epidemic” linked with pain management have no valid research on which to base their concerns, only the media and addiction specialist hysteria. 

Unfortunately, many professionals as well as the general public are not only influenced by the media but learn from it as well. The yellow press of today is comprised of articles full of lies, half-truths, and prejudice.  This behavior is seen in professional articles as well.  Many times the basis for an article is some piece of research which is interpreted by the authors to conform to their point of view.

Not all research gives us proof or even a good indication of the truth.  Some studies are flawed and others are inherently bad.  An example of this is the CDC’s opioid overdose study, which is often cited to make the claim that over 16,000 American die every year from opioid overdoses. 

The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process. Did the patient die from lung cancer or opioid toxicity?  Sometimes the latter is entered as the cause of death when it is not the case.  

Unfortunately this study is quoted by many.  If you say a tale often enough, it becomes a version of the truth.

Many times reporters get their information from questionable sources.  Their experts are frequently addiction doctors and occasionally others who are experts in their own minds.  Someone who is expert in pain management is seldom interviewed or quoted and when they are, their message is greatly outweighed by the others or taken out of context.  Selectively presenting “expert” testimony is at best a half truth. 

Reporters need to learn how to read and understand studies, especially if they are going to quote them. In order to know how valid a study is, the size, method, and strength of evidence all needs to be evaluated as well as any weaknesses.  Is this ever done by the media?

There are many fictions. Sometimes pharmaceutical companies are charged with trying to increase their sales by marketing pain medication.  One article said the Institute of Medicine’s report on chronic pain was influenced by the pharmaceutical companies. Another article claimed “our pain was greatly exaggerated” and severe pain really not that common. An article even stated hydromorphone was a long acting form of morphine, an outright untruth but never corrected. There are way too many fabrications to repeat.

One of the biggest challenges for people with persistent pain is the linking of addiction with treatment for pain. Not only the media does it, but even medical organizations geared towards pain such as PainWeek do it.  Yet a Cochrane Review on the available research shows only 4 to 5 percent of people taking opioids for pain become addicted, much less than the 17% in the general population who have addictive personalities. 

I realize there is an irrational fear of addiction (e.g. as a nurse, it was not unusual to have family members of a dying patient worried the patient would become addicted!), but the media should be educating more about pain, pain management, and the true reality of addiction rather than the dangers of addiction and the so-called “epidemic.”

In 1968 Margo McCaffery wrote, “Pain is what the person says it is, existing when he says it does.”  She was heavily ridiculed at the time.  Where Margo once said she would rather be fooled by ten people than let even one person suffer with pain, so many now would rather have 1,000 people suffer with pain than let one person fool them. 

In so many places now, the quality of pain care is measured by the number of prescriptions for opioids written (less is better). Compassion is a forgotten term. I heard a physician recently say only patients dying with cancer should be allowed opioids.

We need to see more accountability by providers and the media for understanding pain, learning about persistent pain syndromes, and about interventions both pharmaceutical and non-pharmaceutical.  There has to be education that not all interventions work the same for everyone; some work better, others may not work at all.

They need to learn if an intervention is affordable or doable. Some medications and many non-pharmacological interventions are not covered by insurance or covered minimally (6 physical therapy treatments a year won’t cut it), making effective therapies too expensive to pay out of pocket. 

Providers continue to get minimal education on persistent pain and treatment options in school.  But when it comes to continuing education they are required to get education on Risk Evaluation and Mitigation Strategies (REMS) for opioids, as well as identifying the addict, yet little about pain treatment.  This lack of edification hinders providers’ ability to care for patients and makes the provider more susceptible to the myths related to addiction.

Providers and the media need to realize the person with persistent pain “owns” their pain. They alone know what it is like, how severe it is, what it prevents them from doing, and most importantly, what works for them and what doesn’t. 

Ethics demand that persistent pain be treated. It is a human right.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.