Blog 12a: Be careful what you believe; it can become your reality (part one).

Furthermore, and more importantly if you are a health professional or in another position of influence, it can become someone else’s reality.

For those of you who believe they understand the science of pain, placebo / nocebo effects and (adaptive and maladaptive) neuroplasticity processes you probably don’t need to read on. The title says it all and almost certainly makes sense to you.

But for those who are interested in further understanding the neuroscience based significance of this comment, or find it hard to ‘buy-in’ completely, this blog is for you.

To begin with there is a relevant quote by Mark Twain – 

“It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”

My work in educating people in pain entails having a supply of suitable metaphors and analogies to help people to understand and re-conceptualise their situation. This is done to help re-balance their brain’s ‘pain equation’.

The other day I was seeing a patient who has been attending for some time and is doing quite well overall after the typical back pain / failed spinal surgery origins. An obstacle to further improvement is that this person (X) feels firmly that certain painkillers remain necessary despite the great likelihood that there is no residual nociception / neuropathic (electrical signalling) input to pain of significant and proportional severity. In an attempt to try to convince X to keep trying to reduce, and hopefully even cease the medications, I used the line in the title of this blog as an introduction to a discussion on the matter. It just popped into my head at the time and seemed to resonate with both of us. I’m sure I am not the first person to consider this comment, but it was the first time that I expressed it myself this way and in this context. As stated, it seemed to resonate and, after the discussion, my patient agreed that it was still worth considering their medication use from this perspective and keep trying to reduce the level of usage.

Another tool I use in my practice is to ask people – “what have you been told, by professionals you have seen in the past, is wrong with you and is causing your pain?”

I think an interesting paper could be written on the many and varied responses which indicate three main general points:

Firstly, there is a hell of a lot of nocebo-effect inducing information being given to people in pain.

Secondly, that the fundamentally flawed ’tissue change = pain’ model that most use doesn’t contain a lot of inter and intra observer consistency in the real world. That is to say that many different health practitioners come up with many opinions on the same patient’s pain (ie: poor inter-observer reliability), and the same health practitioner seems to come up with different views and diagnostic opinions based on the same patient when things don’t go as predicted (ie: poor intra- observer reliability).

Finally, that almost all these opinions that are conveyed to patients in non-adaptive, resistant pain are speculative at best, completely fictitious at worst.

Yet these are freely and abundantly offered by many, including the usual array of experts and ‘gurus’.

When patients improve, the person sitting in the musical chair at that time takes the credit.

When a patient doesn’t improve, this flow of information, based on ‘opinion and belief’, and low level research, feeds the danger side of their brain’s pain equation like a renewable energy source and fuels the patient’s beliefs. This in turn powers a maladaptive neuroplasticity process and results in the reality of continued pain, including a dependence on a system that can keep offering ‘I can fix / improve you’ options for a very long time. There is an ever increasing array of expensive and potentially harmful pharmaceuticals and interventions for people in persistent pain. This is despite there being no correlating improvement in the statistical changes of outcomes.

Some patients don’t listen to expert advice. In many areas of medicine this can be a serious problem eg: stop smoking in cardiovascular and respiratory disease. Curiously, in the field of musculoskeletal / orthopaedic medicine as it relates to pain, this commonly results in a much better outcome! For example, it is my consistent observation over many years that those with ‘degenerative arthritis’ who maintain function despite being told ‘don’t do this / don’t do that’ seem to fare much better. I have had many patients who chose to avoid surgery offered to them including eagerly offered joint replacements, and years later they are active and have minor levels of pain and pain related disability which was contrary to what was confidently predicted to them.

There are many publicised instances of people who have been given a verdict but chose different paths themselves with remarkable results. One caught my eye just the other day during the Rio Olympics:

Wrestler Talgat Ilyasov makes Olympic debut 12 years after being told he will never compete again …

The Uzbek-born athlete will represent Australia at the Rio Games, more than a decade after being told he would never wrestle again because of a back injury …”

(NB: Now, I freely admit that I don’t have the details of this case , but such situations are commonly observed as stated above – “Hey doc! I was told my knee was so bad I needed a knee replacement!! But I thought bugger that! And it’s been fine ever since!”)

These people choose to create their own beliefs, and in many, their inherent aversion to predictions of ‘doom’ based on scan results etc, resulted in a different reality. Many just have a natural (and sensible) aversion to surgical interventions and trade one fear for another.

Contrasting this group with those who harbour standard beliefs, there is no doubt that a proportion improve with standard interventions. Unfortunately, there is no evidence that unequivocally proves that these benefits are not being achieved by placebo effects, and a lot of growing evidence that this is in fact the mechanism by which real improvements in pain and function are achieved.

Unfortunately, there is also the large group who pass through the standard model and maintain beliefs and realities that are over-powered by their contexts, including life stresses and their subconscious responses to those stresses. This group has been growing for some time now in the same period of exponential increases in therapeutic options, technology and interventional expertise.

In this group, entrenched, scientifically unsound beliefs turn into seriously tragic ‘real’ realities. This occurs via those eager, maladaptive neuroplasticity processes. They do not survive the process like the others do.

As health professionals we have a great responsibility to deliver the most scientifically sound message. Our words have serious power at creating beliefs and realities in others in this way. If we give unsound advice some will ignore it, some will improve for reasons that include placebo construct effects, and some will find themselves on a pathway to persistent, resistant pain.

The worst thing we can do then, as health practitioners, is to consider that our beliefs, our experiences and our observations constitute a scientific method. Our ‘beliefs’ can then create beliefs and realities in certain vulnerable patients that we didn’t intend.

It is only now that a scientifically robust method of comparing real versus sham procedures is being applied to surgical and other interventions for pain, that some of us are realising how wrong decades of previously held ‘beliefs’ based on observations actually were. Procedures with highly perceived success rates have now proven that the most powerful form of placebo is a surgical intervention for pain.

To say that this applies only to those procedures studied so far, and that somehow all others are still valid, is a testimony to the power of hopeful ‘belief’ and cognitive dissonance over plain logic. This term refers to the state of discomfort which comes from holding two conflicting thoughts in the mind at the same time. A method of dealing with this tension that is used by many is that any information contrary to the preferred thoughts and beliefs, no matter how solidly based, is viewed skeptically and ultimately dismissed using convenient justifications. This reflects how much the belief is ‘wanted’ rather than how robust it is.

Belief and expert opinion is not ‘science’.

They only form the base for a robust scientific scrutiny process.

Such opinions are not necessarily wrong, but they are not scientifically valid either, particularly when there is reason to question the validity by other information. The scientific method intrinsically entails a continual questioning, not accepting, process. Test and retest is required. Minds need to stay open to new perspectives. Outcomes have to be measured carefully and honest appraisals are required taking into account all possible mechanisms of observed benefits or observed adversities.

Such opinions are not necessarily wrong, but in fragile situations such as those involved in maladaptive pain neuroplasticity, they can contribute to a dangerous reality if believed as factual.

To present such opinions as ‘factual’ and offer expectations and treatments with perceived success based on observations +/- inconsistent science to patients in pain is risky. This approach relies on many factors for benefit including powerful psychobiological placebo effects and are affected by the sociological subgroups of patients described above.

The health community shouldn’t rely on patients’ resilience to surviving unsound beliefs.

The reality of the world of a person with persisting, non-adapting pain is a reality that none of us would choose for ourselves. This reality affects the person’s family and the wider community. The children of people with such pain are more likely to have similar problems and adverse health issues.

Instead of encouraging a reality based on perceived fragility  and ‘danger’ by simple comments based on personal observations, experience and belief like “your spine is degenerate / damaged / unstable and will likely get worse” and “may need surgery”, a different belief should be informed from an early stage:- Eg: “your back does not look as good as it did when you were younger, but it is strong and adaptable. Many people have such changes and worse and feel no pain at all. It is the neuroplasticity response to perceptions and beliefs that is the fragile component of a persistent pain pathway in vulnerable situations, and this is why … (explain pain etc)”.

That information is at this time a more robust science based belief; furthermore it is safe and can foster a positive pathway of rehabilitation built on a solid foundation of knowledge and confidence. It encourages a pathway towards an optimal reality.

NB: In the second part of this blog I am offering other real world examples of many commonly made comments that are more accurately described as beliefs which transition readily into pain realities.

In discussions with my colleagues, I receive two common responses:

First – “The patients you are seeing are different!”

No, because pain is pain; the mechanisms are always the same. It is just the contributors and amplifiers that vary. Acute pain responses are also highly influenced by survival priorities and perceptions. Have a look at the blog with the “Tale of two nails” to illustrate what I mean. In persistent pain it is rarely, if ever, the structural contributors that we target over and over again that are responsible.

Second – “It is all about better patient selection for treatments and interventions.”

Yes, and no. Yes, because this should certainly be an optimal basic requirement but, in the real world too many select poorly. In addition, this perspective applies to ‘textbook’ patients as opposed to the ‘near enough is good enough’ approach of many. No, because of a really important perspective. This is that patients with absolutely perfect text book features, and excellently implemented interventions and surgeries, still have tragic persistent pain outcomes. In fact I know of no evidence that states that such outcomes are lesser in textbook cases when the context is poor. As stated repeatedly, and backed by abundant research, it is the context that predicts the outcome in the vast majority in persistent pain, not the pathology. What is said to such patients can contribute to their context in a powerful manner, influencing the many ‘fork in the road’ moments that they face.

So, to the health practitioners out there who are hopefully realising how powerful words are in contributing to beliefs, realities and outcomes, please consider this in therapeutic interactions and prioritise again the ‘first, do no harm’ principle.

And when someone sees you down the track with persistent, non-adaptive pain and unhelpful beliefs, help them re-conceptualise their pain first as a priority. Unfortunately, this needs to include addressing the limitations of the model that has contributed to getting them to their current reality, ie: ‘first do no further harm’.

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There are many relevant references and resources that support the views expressed in this blog. Here are a few recent ones that have come to my attention and are of particular relevance (clicking should take you to a full copy of the article):