Misinformed Consent? What not to tell a patient with back pain

We just came across a fancy patient information form that was given to a patient after an assessment by a clinician. The form just blew our minds (but not in a good way) because it seemed to be the perfect clinical tool for generating ongoing pain and disability, and all by the simple process of ramping up the fear. So, just for fun, we thought we’d take you through it….(we wanted to show you pictures but issues of copyright gave us the heebie-jeebies – however if you would like to see a blank version of the form you will find it on sale here.)

Page 1 “Examination findings and recommendations for care”.

This page shows a diagram of the spine that the clinician has highlighted in a number of places. Comments are added related to the specific problems of the patient including “curvature of the spine”, “degenerative changes in the spine” and “subluxation complex at the pelvis, L4, L3, T6, T1, C5”. We are starting to build a picture of a rather unwell spine. Unhappy curvatures, degenerative changes and multiple “subluxations”. Actual bona fide spinal malalignments? This sounds bad. No wonder it looks like this will need extensive treatment. In fact the notes assert that the patient will need to be seen twice a week for 3-4 weeks and then once a week for a further 5 weeks (and as we will later learn maybe many, many more times).

Page 2 “Your nervous system controls everything”. The terrifying consequences of subluxations

We are presented with another diagram of the spine, and at each vertebral level the organs/ systems that are associated with (I guess controlled from?) each vertebral level are outlined. For example T6 (the 6th thoracic vertebrae – right in the middle) apparently controls the pancreas, spleen, stomach, oesophagus, middle back (logically – no problem with that!) and duodenum. Our rusty anatomy can’t recall a precise anatomical basis for many of these pathways but it must be true because it just looks so glossy. For our unlucky patient it is amazing that they are still with us. Their identified subluxations suggest possible problems with their half their physiological systems. Our helpful clinician has taken the trouble to highlight the adrenal glands and the liver. So it’s not just the back that is at risk. Already I can feel my pituitary gland and liver begin to ache….

The “Spinal Decay Report” Oh my goodness my spine is crumbling!

Perhaps the most impressive piece of fear-mongering in the document is the “Spinal Decay Report”. This elegant graphic demonstrates a beautiful normal spine alongside images of the process of degeneration and draws a clear causal link between spinal dysfunction and wear and tear. It’s a bit like those horror posters you used to see at the dentist when you were a kid. Helpfully the clinician has highlighted where the patient’s spine is at on this continuum of misery, where they are headed to, and the patient can clearly see that without help they are looking at a permanent problem with “severe bone remodelling”, “irreversible joint fusion” and “permanent loss of function”.

What is wrong with giving patients detailed information? Absolutely nothing but ultimately information should be accurate and empower the patient to make good decisions. The problems here are legion. The patient is lead to consider their pain as the result of serious spinal malalignments (subluxations). Subluxations are a common focus of some chiropractic practice. However the evidence that such subluxations exist and are clinically important phenomena does not stand up to close scrutiny.  Amazingly there is strong evidence that that even clear and unambiguous structural spinal subluxations such as spondylolisis and spondylolisthesis as identified by MRI scans do not seem to relate strongly to back pain symptoms. There is also the implication that these subluxations may be causing disease of other biological systems (once again in the absence of evidence or a clear and plausible mechanism). The spinal decay report weaves a horror story of crumbling degenerating spines, but there is a wealth of evidence telling us that the association between the findings of spinal imaging and pain is weak to non-existent as is the predictive value of spinal imaging for the prognosis of back pain ( e.g. see here, here and here).

Ultimately by perpetuating these myths about back pain the patient is given good reason to fear the pain as a marker of serious disease; to somatize, catastrophise and alter their behaviour to protect their spine unnecessarily. If we consider pain to be “an output of the brain that is produced whenever the brain concludes that body tissue is in danger and action is required” then this information sheet appears to us to be a pretty good pain generating input. Of course we have no evidence that this information did have this effect but we feel it is a reasonable risk to highlight.

What could possibly drive such an approach to therapy? The final page of the report seems to offer some clues. “When you’re feeling better, you’ll have a decision to make. Will you continue with the care necessary to fully heal soft tissues? Or will you abandon the investment that you’ve made so far?”  A colourful graph shows us two possible courses of symptoms. One malignant red line tells a miserable tale of reduced function peppered with regular flare ups. The other cheerful green line demonstrates what happens when the patient invests in continued care. It is a friendly cuddle of an upward curve of improved ligament stability, biomechanics and “doing and being your best”. This of course can be achieved through “monthly checkings”.

Epilogue

Our concerns about this information sheet are related to how it could promote false and unhelpful illness beliefs and a reliance on unnecessary therapy in patients with normal benign back pain. However there is a more sinister side. The patient that this form was handed to presented as a late middle aged, thin lady with a history of rheumatoid arthritis. She was a smoker, had endured long term steroid use and complained of unremitting central mid thoracic pain. These are clear clinical signs to suspect a variety of possible serious pathologies including osteoporotic fractures (she had already had investigations that confirmed reduce bone mineral density in her spine and hips) and yet of the basis of the above assessment her spine was manipulated on 2 occasions. Of course the possible presence of osteoporosis is a contraindication for spinal manipulation. Errors occur in all areas of clinical endeavour and good and bad practitioners can be found wherever you look. However it is worth pondering whether basing an assessment on imaginary or scientifically bankrupt diagnoses might be a barrier to spotting real and serious ones. Later scans of this patient demonstrated thoracic burst fractures. This is not a happy tale.

Neil OConnell 150x150 Misinformed Consent? What not to tell a patient with back pain

About Neil

Neil O’Connell is one of the BiM collaborators and a researcher in the Centre for Research in Rehabilitation, Brunel University, West London, UK. He also tweets! @NeilOConnell.

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BWand 120x150 Misinformed Consent? What not to tell a patient with back pain

About Ben

Benedict Wand is Associate Professor at the School of Health Sciences, The University of Notre Dame

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References:

rb2 large gray Misinformed Consent? What not to tell a patient with back pain

Beattie PF, Meyers SP, Stratford P, Millard RW, & Hollenberg GM (2000). Associations between patient report of symptoms and anatomic impairment visible on lumbar magnetic resonance imaging. Spine, 25 (7), 819-28 PMID: 10751293

Borenstein DG, O’Mara JW Jr, Boden SD, Lauerman WC, Jacobson A, Platenberg C, Schellinger D, & Wiesel SW (2001). The value of magnetic resonance imaging of the lumbar spine to predict low-back pain in asymptomatic subjects : a seven-year follow-up study. The Journal of bone and joint surgery. American volume, 83-A (9), 1306-11 PMID: 11568190

Kalichman L, Li L, Kim DH, Guermazi A, Berkin V, O’Donnell CJ, Hoffmann U, Cole R, & Hunter DJ (2008). Facet joint osteoarthritis and low back pain in the community-based population. Spine, 33 (23), 2560-5 PMID: 18923337

Kalichman L, Kim DH, Li L, Guermazi A, Berkin V, & Hunter DJ (2009). Spondylolysis and spondylolisthesis: prevalence and association with low back pain in the adult community-based population. Spine, 34 (2), 199-205 PMID: 19139672

Mirtz TA, Morgan L, Wyatt LH, & Greene L (2009). An epidemiological examination of the subluxation construct using Hill’s criteria of causation. Chiropractic & osteopathy, 17 PMID: 19954544

Moseley GL (2003). A pain neuromatrix approach to patients with chronic pain. Manual therapy, 8 (3), 130-40 PMID: 12909433

All blog posts should be attributed to their author, not to BodyInMind. That is, BodyInMind wants authors to say what they really think, not what they think BodyInMind thinks they should think. Think about that!

Comments

  1. Have you fed this back to the dr and the people making the form/ hospital?

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    Heidi Reply:

    We put trackbacks into posts – which alert people if we have mentioned them, so they should get a notification.

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  2. Luke Parkitny says:

    Nice work guys – and written in that perfectly inimitable style of yours!
    What I would also add is that any diagnostic, teaching, or therapeutic method/device that is accompanied by marketing videos portraying “scripted delivery methods” is, at least initially, suspect.
    Perusing the cited web-site it took me all of 1 nano-second to discover that lovely video of the creator of these fine forms and posters which states that at least one of the posters was created because “I noticed that patients discontinued their care as soon as they became better”.
    I am of simple mind but I would not continue to have knee replacements if my knee stopped hurting; I would not continue chemotherapy if my cancer went away; I would leave the ICU when my sepsis resolved, etc etc.

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    Neil O'Connell Reply:

    Cheers Luke! Yeah – how odd that people would discontinue care when they don’t have symptoms huh?

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    Dr. Nima Rahmany Reply:

    happens all the time in my practice– then when the pain comes back, they regret not maintaining their spinal health with exercise and regular adjustments.
    Symptoms are always the last thing to show up in any disease/disorder process. And usually the first thing to go.

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  3. Dr. Nima Rahmany says:

    I am a chiropractor and completely understand your point of view. When you are looking at treating low back pain and looking and studying subluxations from a medical perspective, it looks like chiropractors are out to scare people into long term care plans because their spines are crumbling.
    Subluxations are simply movement deficiencies in the spinal joints. They become stuck and locked out of proper position. This can happen with or without pain. Pain starts to happen when the inflammation around the joint reaches a certain threshold and it starts to irritate the surrounding tissues. Often time, just like dental pain, the problem has been building for a period of time before pain sets in.
    Call me biased, but I see chiropractic care more like exercise than a treatment– something you do to keep your spinal joints healthy so that you never NEED a treatment. I’ve been getting weekly adjustments for 10 years, and I believe, that combined with a healthy lifestyle has been responsible for me to have zero back pain. This is the lifestyle I recommend to my patients… the ones who participate in this type of care (who used to flare up constantly) will go the entire year without a flare-up because of the pro-active measures we’re doing and teaching them to do.

    As far as “treatment plans” go, since every case is different– it’s pretty much useless arguing over hypotheticals, I can assure you that those who consistently wait for pain to come before they get their spine grow older and find themselves increasing in the frequency and severity of their flare ups.

    Subluxations (movement restrictions in the spine) decrease proprioception into the brain, and increase nociceptive input. This takes the nervous system function out of homeostasis and actually triggers the stress response via the Hypothalamic-Pituitary axis. I figured that out because I wanted to research why many of my patients reported better digestion, breathing, sleeping, reproductive and overall sense of well being while under regular chiropractic care– not just for low back pain. Turns out that we get criticized that we claim to cure everything when that’s simply not true– chiropractic care helps to normalize function in the nervous system by increasing proprioception, decreasing nociception, lowering the stress response, decreasing cortisol/adrenaline secretion which leads to overall health benefits– not a treatment for disease.
    There will always be a debate because there are so many ways of looking at the body. Chiropractors don’t treat diseases and disorders– only remove interference in a properly functioning nervous system. The body will do the rest more times than not.

    [Reply]

    Neil O'Connell Reply:

    Hi Nima,
    Thanks for your comments and for contributing to the discussion.
    The definition of “subluxation” tends to vary from source to source. However there is little to no evidence to validate the construct. Given the very weak (or lack of) association between observable degenerative spinal changes and back pain, or gross misalignment such as spondylolisthesis (see the papers cited in the blog) a fair conclusion might be that the spine is fairly resistant to quite major structural challenges. I would argue that such evidence represents a significant challenge to the subluxation model.

    The model of pain that you describe is interesting but is based on a theoretical basis that is yet to be verified. Every approach to spinal care boasts a model of sorts but unless the predictions of that model can be tested and found to hold we should be cautious in confidently stating that that is what is actually going on. For example we don’t have evidence that subluxations even exist and can be reliably identified, that they lead to pain, that they alter proprioception, reduce interference in the nervous system etc. It comes down to “ways of knowing”. Such theories form the convention of that particular treatment model, but convention alone does not validate them. Indeed the paper we cite by Mirtz et al. goes some way in the other direction. In the absence of good proof of the principle subluxation, the whole idea becomes an argument from authority, which alone demands that it be treated with serious caution. I also have strong reservations given the origins of the theory: http://www.ncbi.nlm.nih.gov/pubmed/18280103

    The same thing goes with clinical anecdotes. It is interesting and compelling to see patients get better after treatment but drawing a causal inference between our treatment and their recovery is a dangerous business and common source of error. While it is great that you have been pain free and that your patients report improvements, these anecdotes are not enough to be confident that your treatment works or was responsible. This essay by Barry Beyerstein explains this about as clearly as anybody ever has: http://www.csicop.org/si/show/why_bogus_therapies_seem_to_work

    In terms of back pain I would say it is fair to conclude that none of us currently have a good answer to the problem. This study ( http://www.ncbi.nlm.nih.gov/pubmed/7666878 ) offers a pointer on this – whether subjects with acute back pain saw just their primary care clinician, chiropractor, orthopaedic surgeon or anybody else, outcomes at 6 months were the same in terms of return to work, incidence of full recovery or function. So the ability of an individual therapy to alter the natural course of the condition is suspect.

    Finally I do not think we should see adjustments and manipulation like exercise as exercises can be taught and a patient can learn them as a strategy for self management. Adjustments and manipulation require a reliance on the treating clinician. The form sells a compelling model to the patient that in turn justifies continued care. The model appears flawed in light of the evidence yet these fair and significant doubts are not reflected in the form. If patients are really to be empowered to make good decisions about their own health then they need good information. This process needs to go further than selling an idea or model that has not been scientifically validated. The best evidence to date (as reflected by all of the international back pain guidelines) strongly indicates that we should be advising patients to stay active and resume normal activities as quickly as possible and most back pain is not clearly the result of identifiable serious spinal pathology. In my opinion the form that we discuss does not fulfil this goal.

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  4. Julia Hush says:

    Brilliant post Neil and Ben – thanks. I’ll use it in my teaching if I may.

    [Reply]

    Neil O'Connell Reply:

    Thanks Julia- feel free!

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  5. Great post.

    Do we have any studies to show how the fear avoidance beliefs can certainly aggravate or play a large role in back pain. And has there been any outcome studies on the neuromatrix theory?

    And is there a possibility that the people which had all these abnormalities on the scan had a greater chance of developing back pain than others without any abnormal scans?

    Thanks

    [Reply]

  6. Chris Barnett says:

    I think what is fascinating about Dr Rahmany’s reply is that without wishing to cause offence , that you can read he absolutely 100% believes in this paradigm for back pain despite a complete lack of scientific evidence.

    Patients can be extremly vulnerable to this approach especially when it comes from a “life coach and inspirational speaker”. It’s my opinion that a “fully functioning body mind and spirit ” need not come from twice weekly adjustments to the thoracic spine and then weekly with regular on going visits thereafter.

    I wish Dr Ramany all the best and appreciate his thoughts on spinal pain, on a blog site that depite being called Body in Mind has nothing to do with new age holism but is quite obviously based firmly within the evidence based movement.

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  7. Lena Sabeiha says:

    Very good blog you have here but I was curious about if you knew of any message boards that cover the same topics talked about in this article? I’d really love to be a part of online community where I can get opinions from other knowledgeable individuals that share the same interest. If you have any suggestions, please let me know. Bless you!

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  8. This is a great topic to discuss and I have several thoughts which I would love comments from. 1) I agree that function is more important than structure and think that this is supported by the evidence, however, I don’t then understand why people get MRI scans and get discectomies on the levels shown on the MRI report. I do know that many asymptomatic people have disc bulges evident on MRI. 2) I believe that the current medical model perpetuates this reliance on others. Eg something’s wrong, we go to the gp for a pill to change the symptom. Shouldn’t there be much more emphasis on nutrition, exercise, positive mental exercises and actually making an effortto help our poor bodies etc rather than taking something, which unfortunately seems much easier.
    Thoughts and comments much appreciated

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  9. This is a fantastic post that would help many in our profession — and it’s even made me re-examine and scrutinize my “report of findings” form. Thank you!

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  10. Julia Hush says:

    This is criminal. How this person can be a registered health care practitioner is beyond belief.

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  11. Matthew Bennett says:

    There are clear Code of Practice guidelines against this sort of mis-information. The practitioner should be reported to the relevant health regulator.

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  12. Dr Rahmany’s reply regarding the outdated and unproven chiropractic subluxation model comes from the dogmatic teachings which is inherent in the chiropractic colleges. But if we look closer to home, in physiotherapy we still have universities teaching students how we can improve patients acute and chronic lower back pain by re-training transversus abdominis and multifidus, despite no evidence whats so ever.

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Trackbacks

  1. [...] in Mind have some discussion of more chiropractic fearmongering in the form of a leaflet. Having pointed out that information [...]

  2. [...] O'Connell,Research,Treatments TweetWe have written a fair amount here about back pain. We’ve criticised some of the information patients get, shown how data has undermined many widely held beliefs about back pain (here and here), and [...]

  3. [...] We’ve discussed the problems with this before. The best evidence strongly indicates that these stuctural findings on X-Ray and MRI are not clearly related to the onset, severity, duration or prognosis of low back pain. The presence of degenerative changes (see also here), disc pathology, muscle wasting, even spondylolisthesis and spondyolysis are common in those without pain and are poorly correlated with the signs and symptoms of low back pain. It’s counterintuitive but there you are. It is what it is. Be honest though, if you are a clinician – it’s hard not to blame that lack of recovery on “wear and tear” isn’t it? Neat, tidy but unsubstantiated  explanations are hard to shake off. [...]

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