Not only does it simply make sense that people need to be appropriately informed about the risks and benefits of treatments before they consent to having them, but it is also generally a medicolegal requirement.
There is recognised importance of practising medicine professionally, competently but, most of all, safely. The fundamental medical principle of ‘first do no harm’ is an underlying theme in this requirement.
When it comes to pain, people make decisions to take on risks of recommended management using information that is not up to date with pain science. The information received is, at best, incomplete and unbalanced, and aspects of it can even be misleading. The question to be asked is – how is this still acceptable informed consent in 2018?
The best science tells us that pain is robustly aligned with the perceived need for protection and not with body ‘damage’. This damage produces signalling to the brain which generates pain for protection. ALL damage that is seen on scans is also seen in people with no problems as well. These are very common, well adapted changes. Certainly, these things can contribute to pain, but they are also highly adaptable. To make things more interesting, pain can be severe with no detectable damage at all. So, just seeing something on a scan in a region that hurts does not prove that what is being looked at is contributing to pain at all. Most of us are not told any of this; on the contrary we are scanned quickly and told the opposite, and sent to people who seek to ‘fix’ what is seen in areas of pain using various techniques including surgery.
Problematically, by simply being told that we are damaged and we ‘may need fixing if the pain doesn’t go away’, our protective processes are on alert and pain is MORE likely.
How do we know that this is correct? There are many examples but a good one is the evidence on which the international ‘Choosing Wisely’ program on back pain is based on. Put quite simply, if there isn’t a bloody good reason to have your back scanned, DON’T!! If you do, you are at a higher risk of a worse back pain experience. It isn’t the scan which is somehow causing the worse outcome, it is what is informed about the scan that is SCARY! Simply telling someone that a disc “bulge” or similar is ‘causing their pain’ is more damaging than having the bulge because these are seen commonly in people with no pain at all; a perspective that is still commonly not informed.
There are more ‘informed consent’ problems when it comes to managing pain by trying to ‘fix’ things seen on scans. For a long time getting rid of pain by operating on people was assumed to be directly related to being ‘fixed’ by the surgery. Over more recent times various surgeries directed to painful conditions have been looked at by comparing real surgery to fake surgery. These studies have been done with knee, shoulder and elbow surgery and one type of back surgery. So far, these surgeries have not scored a goal for direct effect. Patients do get better, but they get better in identical numbers just by thinking that they have had the surgery without actually having it. The surgery is effective in many, but certainly not all. When it is effective we now know that it isn’t directly effective but is working through our brains processing of what is going on. Our systems become reassured that all is well, stopping protective signals to our bodies and sending ‘let’s get better’ messages which translate to less inflammation, less protective behaviour and less pain.
This is the latest and best science. How many people are told all this before they accept the risks of surgery? The sad reality is that the likely answer is almost none. I was involved in a project recently on back surgery where people facing surgery were asked this question and almost all had not been informed.
Despite the unfortunate fact that this is the common approach, which the majority would still find acceptable, I cannot see how this ‘catch 22*’ process could possibly satisfy the requirements of informed consent and the ‘first, do no harm’ principle.
It is proposed that in 2018 it should be a basic requirement, and a fundamental consumer / patient right to understand their pain properly and then also understand the true risks and benefits of ‘fixing’ attempts. This comment doesn’t just apply to recognised complications from fixing interventions that are generally informed adequately, but to modern pain science itself and the up to date information on what the problems are with the ‘I can fix your pain by doing this …’ approach. It is further proposed that until all this gets sorted out properly, the warning – ‘consumer beware’ applies quite vigorously.
The following questions could be asked of people offering pain ‘fixing’ interventions:
- How common is it for people with no symptoms to also have the same physical changes that you have found on my scans?
- What is the reason why not all people with the same scan results feel the same level of pain, and why do many feel no pain at all?
- Is it true that simply being scared that I have damage that needs protecting can make me feel more pain?
- Please explain pain science to me or please send me to someone who can give me this information.
- Is it possible that my pain has become sensitised**? If so, what could happen to that sensitisation process after the scarring that will happen with surgery?
- I have heard that people in pain get better with ‘fake’ surgery; how does that work?
- How do you know for sure that what you want to do works directly and not indirectly the same way?
- Has chronic pain lessened statistically over the past decades with better technology and surgeries?
- If my surgery is structurally successful, what is the explanation if my pain is still there after surgery and what will I do about it then?
- If many people have pain management programs including pain education when their pain is still there after surgery, couldn’t it be helpful to do that before the risky surgery?
It is important to be aware of an elephant in the room. There is an unfortunate reality that many who offer pain ‘fixes’ still interpret evidence generously to support ‘fixes’ that have simply been accepted for a long time despite the overall outcomes, and are financially rewarding. Many may not understand the pain science broadly enough themselves. It would therefore help to do some self-driven exploration and be an ‘informed’ consumer. Many offered fixes, eg: spinal surgery for back pain, are a point-of-no-return and are best avoided, not consented. The informed consent process can only really be proper and ‘painless’ if it includes good pain knowledge.
*The meaning of the phrase ‘catch 22’ is essentially what happens when you do something to create a certain outcome but by doing that thing you unavoidably create the opposite outcome. I have another blog on how common this problem is in pain management.
**When pain continues there is an inevitable ‘winding up’ of the process. When that happens less signalling input from the body tissues is required for the same, or even worse, pain. The pain has become over-protective.