Forget ‘pain’ let’s start talking about the ‘person’

Author: Carl Davies

“Most of the evil in this world is done by people with good intentions.”
– T.S. Elliot.

In my blog around whether passive treatments cause harm, I made the point that we need to be cautious around dividing complex problems into dichotomies.  Interestingly, whilst many people seemed to get the point of the blog, the very two groups I was heeding caution against seemed to use it as a way to justify their own arguments further.

My blog was in no way intended to justify the use of what are clearly low value interventions, but to acknowledge that there are too many ‘unknowns’ to simply throw the baby out with the bath water.  I am not going to get entangled in a debate about this issue, because I see no need to justify the argument that a balanced approach is useful.   However, a number of people requested information on behavioural change interventions and I hope this blog goes someway to starting a positive conversation around behaviour change.

Evidence

During one twitter debate, there was an acknowledgement that there is a gap in the ‘physio‘ literature around whether passive treatment could be of ‘any’ use in helping patients on a journey to ’empowerment’ or ‘reactivation’.  This was used to justify the arguments ‘against’ and to suggest that the argument ‘for’ is “weak and unproven”.  However, as we all know ‘absence of proof, is not proof of absence’.  It is always useful to identify gaps in the literature and I genuinely hope somebody feels motivated enough to explore it from a ‘Physio’ perspective.

One must ask the question though, when dealing with ‘people’, why would we only look to the ‘Physio’ literature.  Psychological studies have been trying to unravel the complexity of human behaviour for centuries, and one thing is clear: to have any chance of helping people change behaviours, they must first ‘want to change’.   I won’t talk through the variety of principles that aid the conversation to help facilitate a person on their own journey of discovery for the ‘need’ for change.  However, the argument for using a little “give and take” (that one popular commentator described as “lame” and demanded evidence for) or ‘reciprocity’ is actually well established.

The theory of reciprocity suggests that the act of ‘giving’ creates an internal conflict that needs to be resolved.  The easiest way to do this is found to be to ‘give’ something back.  This is a vital part of negotiation and this ‘give and take’ is very much part of building a therapeutic alliance.  During the process of facilitating behaviour change we are often ‘negotiating’ with patients and that can include reciprocity in a variety of forms.  In order to be able to justify the use, we don’t need to test ‘every’ form of ‘giving’.  We just need to understand to what end we are employing it’s use and be confident we are operating within the broad guidelines for ‘best practice’ under this principle.  Being able to take research findings and balance them alongside our own reasoning and patient preference is the true foundation of ‘evidence based practice’.  Whereas demanding that the research be followed “absolutely” with no recognition of the need for balance with experience and patient preference is actually counter to the principles of EBM.

EBM 1

Akobeng , 2005

From a psychological perspective, black and white thinking is rarely very useful, particularly if it comes from a “clinician know’s best’ approach to supporting patients.  Suggesting ‘we’ have all the answers completely ignores the ‘expert patient’ who knows ‘their pain and the challenges it brings for them personally’ better than any of us could – no matter how much we read the literature.  If their needs differ from what we believe to be best practice we can ‘tell’ them what to do and what the ‘best-practice says’, or we can frame what we believe is useful to support their needs and facilitate the patients own discovery – and again, the psychological literature is clear on which approach works best.

One of the most useful considerations I have found is that beliefs set the foundation of behaviour.  Much of the work I did with patients was about exploration of the underlying belief driving the behaviour.  People arrive at the clinicians door with a complex set of beliefs and behaviours, and each person will be at different stage of a ‘change’ process depending on their own ‘individual’ journey.

IMG_2566.png

I fundamentally believe that it is the psychological interventions used to connect with the ‘person’ that provide the biggest benefit for people with pain.   With a background in psychology and behaviour change, my role as a physiotherapist specialising in complex pain and fatigue-related disorder became a frustrating one.    I loved supporting patients, but I saw that the system was not set up to help people with complex pain/fatigue.  Not because clinicians within the system didn’t care, didn’t understand pain, or didn’t want to help, but because often ‘trying’ to help created a bigger problem for the person presenting with pain/fatigue.  I think this is where the frustration of many of the ‘all passive interventions are bad’ crew comes from.  I get it, Reinforcing unhelpful beliefs around Pain is frustrating. I share the frustrations, I left my clinical role 5 years ago to try and help shape the system because of it.  However, I recognised that shouting from the sidelines about how ‘wrong’ everyone else in the system was (to not be working how ‘I believed’ they should) would have been arrogant and pointless.  I chose instead to consider my circle of influence and where I could be most effective in helping shape the future direction of MSK & Pain services.  I put my energies into learning about complexity and systems theory and how to influence across systems.  Whilst it was a tough decision to leave clinical practice, I absolutely believe that this was the best career decision I have made to date.

As a clinician, the physiotherapy literature I connected with informed me we needed to encourage people to both ‘understand their pain’, and ‘understand what they can do for themselves’.  However, patients often arrived at my clinic confused and upset.  They reported they felt “let down” and that “nobody is listening”.  Everyone they had seen (including very good physios well-versed in the latest evidence) had tried to help them with all of these things.  However, the patient sat before me didn’t know who to believe or what to do, all they knew was that since the day their problems had progressed to the point that they sought help, their life had got steadily worse.  Slowly, the pain had inadvertently become the centre of their life, and it was wrapped tightly in a mix of contradictory information that was now directing how they lived.  They were often angry or depressed, their jobs were often at risk or had already gone, as were their closest personal relationships.  The system had disempowered them and it had done this because numerous treating clinicians had focused on trying to ‘help them understand & treat their condition’ rather than those clinicians focusing on understanding the person in front of them.  We clearly owe patients more than this, the question is how we change practice most effectively.

“It’s more important to know what sort of person has the disease, than to know what sort of disease the person has” (Hippocrates)

We often hear of the importance of ‘motivational interviewing’ or ‘active listening’.  It is true that both of these can be very useful, but at times it seems some physios are simply looking to develop their skills around giving the person a ‘solution’ or ‘fixing’ them. It’s used as a way of improving our ‘sales’ techniques for the products we want to ‘give’ them.  It’s understandable, as clinicians we want to ‘help’.  When faced with patients in need, we give what we are able to give…but what if what you have to give is not what the patient needs?  Or what you refuse to give, is partly what the patient needs?    What if the best form of ‘treatment’ is not what we offer as ‘physios’ but what we offer as ‘people’?

I wonder if it is worth us considering whether it is our role simply to connect with, and be authentic in, our desire to understand the patient and their needs?  Is it time that we shift the focus from ‘understanding pain’ to ‘understanding the psychological journey of coping with complex pain’?  After my first blog I received a number of questions around my approach to managing patients with complex psychological or behavioural challenges.  Whilst there are numerous concepts, principles and techniques I would employ to facilitate behaviour change, I hope the remainder of this blog helps those who asked about my approach.

That ‘pain’ conversation

I have been lucky enough to work with some excellent clinicians in my clinical, and in my strategic/transformation, roles.  One of those people was the excellent Cathy Stannard, Consultant in Pain Medicine (and author and speaker on opioid use in pain).  As part of the work we were doing, Cathy gave a talk to GP’s, Consultants and therapists.  She stated that acknowledging patients as people, and offering genuinely therapeutic management options appropriate for the individual needs of those patients, were the responsibility of all clinicians when faced with people suffering with pain.   She advised them to reconsider the ‘interventions’ we provide and in particular the ‘opioids’ prescribed to “help” patient ‘cope’ with pain.  One GP put up their hand and asked a question along the lines of:

“We hear and read this all the time, but we are the ones faced with patients suffering in pain, what else is there?”.

Cathy responded with a variant of:

“It is not about what else, it is about first doing no harm.  It is not right, and is actually counter-therapeutic, to prescribe opioids that lead patients down a path of addiction and further suffering, no matter how good the intention”

It was the first time I had witnessed somebody so eloquently and succinctly answer that question in a room full of their peers….and it was fantastic.  It was the kind of response, so perfectly timed and delivered, that you could feel the whole room pause and reflect.

However, the question raises a valid point that there is without doubt a challenge clinicians face when presented with a patient with complex pain.  How do we have ‘that’ conversation?  How do we deliver the news that we may not have a ‘cure’ for their pain and support patients through this?  How do we make sure we do this in a way that doesn’t come across as dismissive or lead them simply to go and search for answers from somebody else who ‘is‘ willing to sell them their ‘products’ and ‘hope’ through the promise to ‘take away their pain’.

Personally, I always felt that to help the patient the most, I had to connect with them emotionally.  Moreover, I needed to be authentic in my desire to connect.  I needed not to ‘help them understand their pain’, but to show that I understood ‘them and what they were going through’ and I needed to help them on that journey.  I needed not to ‘tell them’ what the literature said, or what “I knew”.  I needed not to ‘tell them’ why what they had been offered previously was “rubbish” or “wrong”, but to help them explore what they ‘knew’ or ‘believed’, with a view to finding ‘their’ way forward.

Grief

Understanding the ‘patient’, I believe, needs us to recognise the journey ‘people’ with the long-term condition of complex pain must go through and that coming to terms with the fact that pain may be a long-term condition is grieving process.

kubler-1024x806-1-1024x806

It is a transition from their ‘life before pain’ to the prospect of a new life ‘living with pain’.  Therefore, patients can not only arrive in a certain stage of ‘behaviour change’ they can also arrive in varying states of psychological readiness dependent on where they are in the grieving process.  I adapted my approach depending on the patient, but always with the aim of moving them along their journey through these stages of grief.  In my experience, the most complex people often find themselves ‘stuck’ somewhere between anger, bargaining and depression.

Steven Hayes developed the term ‘cognitive fusion’ as part of his ‘Acceptance & Commitment Therapy’ framework.  This is when individuals become ‘fused’ with their (often unhelpful) thoughts, memories, assumptions, beliefs etc.  I often worry when I hear the current twitter conversation (particularly the people lambasting others for their practice), what messages are being given to patients about their ‘previous’ care.  I always avoided blame, because unless I could prove that somebody had been ‘negligent’ (which was almost never the case), I found it counter-productive.  I remember a patient who had a long history of pain, who had unfortunately gone on to have surgery.  The surgery had been offered in good faith and had clinical justification, but had not resolved the patients pain.  Sadly, during the post op investigations one clinician (in diagnostics) had suggested that the “tourniquet may have been too tight” during surgery.  They had no evidence of this.  There was also no purposeful malice in what they had suggested.  However, that simple sentence meant that patient embarked on 3-year journey of ‘compensation’ and ‘blame’.   Of course, there was no evidence of negligence and the patient was left “broken and angry” when they arrived at my door.  That was not an isolated incident, patients with chronic or complex pain often got ‘stuck’ on beliefs about somebody being the ’cause’ of their ongoing suffering, and if that belief was reinforced by a clinician it could be incredibly difficult to overcome.

I wrote in my first blog about my aim of ‘keeping patients in the room’ because I often felt I couldn’t help people on their emotional journey, and give the support I needed, if I held on to the ‘traditional’ Physio approach.  Standing by what is best as per the ‘Physiotherapy’ literature would have been unhelpful, given that my understanding and interpretation of the psychological literature contradicted it to some extent.  I needed to walk with the patient along ‘their’ journey, not one I thought was best.  My role was to identify what was preventing the patient moving forward, and encourage them to explore it.  Whilst I employed various techniques depending on the person in the room, one of the most powerful methods I found for helping patients on this journey was ‘creative hopelessness’.

Creative Hopelessness

“When we are no longer able to change a situation, we are challenged to change ourselves” (Victor Frankl) 

For those unfamiliar with it, Creative Hopelessness is a technique that supports patients with reflecting on their current approach to coping with a challenge.  The aim of this technique is to create a sense of hopelessness in the agenda of emotional control of their pain. Not hopelessness in one’s life, or one’s future, but in continuing to seek a ‘solution’ where one may not exist.  This is a powerful and challenging technique, and there are numerous ways to deliver it.  It helps reframe beliefs and challenge decision-making, but it can also be an extremely difficult period in the patients journey towards acceptance.  As a clinician, one must be comfortable with giving patients the time and space to let their emotion out when taking this approach.  I would often do this as a physical exercise, walking patients through a cycle of futility.  Whilst it is more complex, the principles can be summed up in four questions presented by Strosahl, Robinson & Gustavsson (2012):

  1. What are you seeking?
  2. What have you tried?
  3. How has it worked?
  4. What has it cost you?

I would not ask the questions directly, but they would be the key lines of enquiry as the patient and I explored their previous attempts to resolve their on going problems.  During my ACT training I was taught to write the answers down on A4 sheets and lay them out in a circle.  You can then begin to walk together (physically) through the patients journey.  As you start to question together, you can explore what options you have around different ways of managing (rather than resolving) pain.  This can be extremely powerful in moving patients towards ‘acceptance’ of pain.

Acceptance

Acceptance is a crucial part of managing pain, as it allows patients to be comfortable with the ‘uncertainty’.  One must accept that they may always have pain if they are to stand any chance of overcoming their pain.  However, one cannot ‘accept’ pain if only ‘accepting’ it in order to rid oneself of it – as that is not truly accepting pain.  It is an interesting paradox.  Personally, I believe ‘acceptance’ (rooted in Buddhism) is the most powerful way of coping with ALL suffering, and is a vital component of ‘every’ patients journey to managing pain (of any kind).  It is vital to acknowledge that acceptance is NOT ‘giving up’.   Far from it, acceptance is about finding a space for the pain, and learning to live a fulfilling life ‘alongside it’.

Regardless of what we think we know about the best way to manage pain, we should accept that we likely do not know enough.  To be ‘certain’ is folly when it comes to such abstract and complex concepts of pain and human behaviour/psychology.  If there is one thing that I hold in mind when dealing with patients in pain, it is that it really doesn’t matter how good your knowledge in ‘physical’ interventions or which ones you choose, if there is a lack of understanding of the ‘person’ and how we truly connect with them and their needs.  Perhaps, much like we need patients to, we should get comfortable with ‘uncertainty’ of pain.  It may be useful to forget trying to ‘prove we are right’ regarding our beliefs around ‘physiotherapy interventions’, and instead be part of the exploration of how best to support patients on ‘their’ journey and do whatever it takes to truly move them forward.  Perhaps the best way to ‘support the patient’ might be to acknowledge our role in understanding and empathising with the ‘person’.  Maybe then, as Physiotherapists, we can truly say we are delivering ‘evidence-based, person-centred, biopsychosocial’ models of care.

References

Akobeng, A.  (2005) Principles of Evidence Based Medicine.  Arch Dis Child 2005;90:837–840

Strosahl, Robinson & Gustavsson (2012) Brief Interventions for Radical ChangePrinciples and Practice of Focused Acceptance and Commitment Therapy


Posted

in

by

Comments

One response to “Forget ‘pain’ let’s start talking about the ‘person’”

  1. Using the Socratic Method on the debate about passive treatment – If We Build It… Avatar

    […] based on my beliefs around behaviour and building deeper connections with patients through ‘reciprocity‘, another argument is that it presented a complex ‘Ethical Dilemma’ which changed […]

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: