willingness

Having The Conversation…


Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle”
( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

Being mindful about mindfulness


I’m generally a supporter of mindfulness practice. It’s been a great discipline for me as I deal with everyday life and everything. I don’t admit to being incredibly disciplined about “making time for meditation” every day – that is, I don’t sit down and do the whole thing at a set time each day – but I do dip in and out of mindfulness throughout my day. While I’m brushing my teeth, slurping on a coffee, driving, sitting in the sun, looking at the leaves on the trees, cuddling my Sheba-dog I’ll bring myself to the present moment and take a couple of minutes to be fully present. Oddly enough I don’t do this nearly as often when I’m cold (like this morning when it’s about 8 degrees in my office!), or when I’m eating parsnip (ewwwww!), or waiting to see a dentist. Or perhaps that’s not odd at all, because I wonder if we have a skewed view on mindfulness and what it’s about.

My reason for writing this post comes from reading Anhever, Haller, Barth, Lauche, Dobos & Cramer (2017) recent review of mindfulness-based stress reduction for treating low back pain. In it, they found “MBSR was associated with short-term improvements in pain intensity (4 RCTs; mean difference [MD], −0.96 point on a numerical rating scale [95% CI, −1.64 to −0.34 point]; standardized mean difference [SMD], −0.48 point [CI, −0.82 to −0.14 point]) and physical functioning (2 RCTs; MD, 2.50 [CI, 0.90 to 4.10 point]; SMD, 0.25 [CI, 0.09 to 0.41 point]) that were not sustained in the long term.” There were only seven RCTs included in the study, with a total of only 864 participants, and many of the studies had no active control groups, so my interpretation is that there are flaws in many of the studies examining MBSR, and that it’s difficult to draw any conclusions, let alone strong conclusions.

Where do we go wrong with mindfulness? The first point about the studies included in Anhever and colleagues paper is that there is a difference between mindfulness in general and mindfulness based stress reduction – and although the difference may be minimal, it’s nevertheless worth understanding. MBSR is a full programme that includes mindfulness as one element (Kabat-Zinn, 1982). Mindfulness is a key component, yes, but the programmes include other elements.  The second point is that perhaps we’re assuming mindfulness to be something that it isn’t –  I suspect, from reading numerous articles in both the popular media and research papers, that mindfulness is being applied as another form of relaxation.

Relaxation training was introduced as part of a behavioural approach to managing stress. In pain management it’s been part of programmes since the 1970’s, particularly using forms of progressive muscle relaxation (See Dawn & Seers, 1998). The intention is to provide an experience that is incompatible with tension, and to develop the capability to down-regulate the body and mind to mitigate the stress response that is so often part of persistent pain.

Relaxation training can take many forms, and breath control is a common component. I use it often for myself, and when working with clients – I’m aiming to show people that although they may not be able to control heart rate or blood pressure, they can control breath and muscle tension. It’s useful especially as part of sleep management.

The thing with relaxation training is it’s entire purpose is to help downregulate an upregulated nervous system. Mindfulness, on the other hand, is not.

What is mindfulness about if it’s not about relaxation? Well, mindfulness has been defined in many different ways, but the one I especially like is by Kabat-Zinn (1990) “a process of bringing a certain quality of attention to moment-by-moment experience”.  This definition can be further unpacked by examining its components: “Mindfulness begins by bringing awareness to current experience—observing and attending to the changing field of thoughts, feelings, and sensations from moment to moment—by regulating the focus of attention.” (italics are mine) –  this quote is from Bishop, Lau, Shapiro and colleagues (2004) and is from a paper looking at defining mindfulness in an operational way (so we can be aware of what it means in practice, or as we teach others). These authors go on to say that this process leads to a feeling of being very alert to what is occurring in the here and now. I like to remind people that it’s about being here rather than remembering or anticipating what might.

So at least one part of mindfulness is learning how to attend to what YOU want to attend to, rather than being dragged back to memories, or forward to predictions, or to experiences or moments that you don’t want to notice at that moment.  The definition also points to noticing and experiencing what is happening, rather than thoughts or ruminations about what you’re experiencing. For people living with persistent pain, I think this is an invaluable tool for dealing with the interruptive effects of pain on attention.

A second aspect of mindfulness is an attitude – one of curiosity. When being mindful, you’re not trying to produce any particular state, instead you’re being curious about what you are experiencing, whether it’s something you’d ordinarily want to experience – or not. This approach to experience is really similar to what we’re aiming for in persistent pain management – acknowledging and being willing to experience what is, rather than attempting to avoid that experience, or quickly change it to something more palatable.

Now this aspect of mindfulness is often brought to bear on new and pleasant experiences – sometimes people are asked to mindfully eat a raisin, or mindfully examine a ballpoint pen (one of my favourites). But it’s also just as valid to bring this attitude to bear on less than pleasant experiences like my cold fingers and legs (it’s cold in my office this morning). Or to pain and where it is – and where it isn’t.

So I wonder if part of our approach to using mindfulness in pain management is incorrect. If we’re intending people to come away from mindfulness feeling relaxed and calm, perhaps we’re doing it wrong. If we think people should feel better after mindfulness, again, perhaps we’re doing it wrong. Sometimes, yes, these are the effects we’ll have. Other times, not so much. What we will always develop, over time, however, is better ability to focus attention where we want it to go, and more openness to being present to what is rather than struggling against it. And I think those are incredibly valuable tools in life, not just persistent pain management. And perhaps, just perhaps, if we began viewing our use of mindfulness in these ways, the outcomes from RCTs of mindfulness might show more of what it can do.

 

Anheyer, D., Haller, H., Barth, J., Lauche, R., Dobos, G., & Cramer, H. (2017). Mindfulness-based stress reduction for treating low back pain: A systematic review and meta-analysis. Annals of Internal Medicine, 1-9. doi:10.7326/M16-1997

Dawn, Carroll, and Kate Seers. “Relaxation for the relief of chronic pain: a systematic review.” Journal of advanced nursing 27.3 (1998): 476-487.

Kabat-Zinn, J. (1990). Full catastrophe living: Using the wisdom of your mind to face stress, pain and illness. New York:Dell.

Kabat-Zinn, J. (1982). An outpatient program in behavioral medicine for chronic pain patients based on the practice of mindfulness meditation: Theoretical considerations and preliminary results. General hospital psychiatry, 4(1), 33-47. doi:http://dx.doi.org/10.1016/0163-8343(82)90026-3

Accepting chronic pain


ResearchBlogging.org
How willing are you to have persistent pain? Can you accept pain without fighting against it? If you were told your pain was going to be there forever, would you avoid important activities or would you start to get back into life again?

Recently I reviewed about 200 questionnaires completed by people attending the Pain Management Centre where I work. I was looking especially at what they’d written down as goals for coming to the Centre, and unsurprisingly, most of them were to ‘reduce my pain’ – to tolerable levels, to manageable levels, or so the person could begin ‘living a normal life’. I hate to break it to you – even the most effective medication seems to only reduce pain by about 30%, and most people wanting pain reduction are after at least a 60% reduction.

What this means is there is quite a gap between what people expect – and what they get.

Along with all those goals of reducing pain were a huge number of everyday activities that people wanted to return to – provided that their pain reduced.

I haven’t asked people those questions at the top of this post.  I must admit I’m a little wary of doing so – they’re not the sort of thing people really want to hear first off when coming to Pain Management!  Yet, it looks like they’re the sort of thing we might need to ask people at some point in their search for pain reduction.

It’s not easy to think about accepting chronic pain.  Most of the medical people I work with think it’s a horrific thing to consider – a life with pain.  And so the search for something, anything, to take the pain away.  In fact, one doctor said to me it is unethical to stop looking for pain relief, and in fact he wouldn’t dream of withdrawing something that apparently reduced pain – even if it didn’t change the person’s disability one bit.

A couple of definitions here might be helpful: pain is ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage’; disability is the effect of pain on function, related to the amount of interference an individual experiences from pain on their activityPain interference is associated with depression and anxiety, amongst other factors.

Recent studies especially those from the Bath University research group of McCracken and Eccleston, are showing that acceptance of chronic pain is strongly associated with better outcomes especially in terms of activity engagement and reduced distress.  Acceptance in this context is about being willing to experience pain without trying to avoid it, control it or reduce it. The degree of acceptance is associated with engaging in activities that the person values despite experiencing pain, and ‘disengaging from the struggle to limit contact with pain’ (Fish, McGuire, Hogan, Morrison & Stewart, 2010).

In my experience, there are few people who come to a Pain Management Centre who are willing to accept their chronic pain – in fact, when someone says to me ‘I’ve come to accept my pain’, I inwardly cringe because it so often means ‘I’m resisting any accommodation of my pain into my daily life’, or ‘I’m resigned to having pain forever and life is horrid’.  Part of coming to a Pain Management Centre is an expression that life isn’t working out so well, so that something is needed to help the person cope better, feel better and start to live again.

Introducing the idea of acceptance is not always straightforward.  My warped occupational therapy/psychology background means that I find it easier to begin with looking at important values and how these are expressed behaviourally in activity.  Contextual cognitive behavioural therapy, or Acceptance & Commitment Therapy, or other variants of these two, often suggest starting with ‘cognitive defusion’, or the language that people use to describe themselves in which the ‘who’ they are is labelled directly alongside the ‘what’ they want to do.  Difficult theoretical concepts such as relational frame theory underpin this type of therapy, in which the person is helped to slightly distance themselves from the content of their thoughts (particularly negative labels).

My take on starting the journey towards acceptance is to help the person look at what is important in their life, then look at how they’re demonstrating or enacting these values.  For example, if being a good parent is important, how is the person demonstrating this?

If a mother is spending most of her time cleaning the house because this has been her usual way of showing that she cares for her family, but cleaning is demanding and she feels frustrated and irritated at herself and her family because of her pain, then maybe there can be another way to show her values.  I might suggest to her that she list all the ways she can show her family that she cares, and choose one to start doing.

While she starts to explore this, and to consider loosening up her belief that ‘the only way to be a good mother is to have a clean home’, it’s possible to help her review her thoughts that ‘only bad mothers have untidy homes’, and maybe consider a more flexible thought that ‘mothers who care for their family spend time with them’.  By doing this, and identifying an activity that she enjoys with her family, I can start to introduce the idea that she could do this activity – and bring her pain along with her.

At this point I can start to introduce the idea of mindful attention to the whole of the activity, rather than just her pain.  And we are one step closer to helping her recognise that she doesn’t need to struggle against her pain, she can instead fill her life with good things, and the pain (and especially the negative emotions around pain) can become just another aspect of her experience.

A brief questionnaire that could be used to measure this is the Chronic Pain Acceptance Questionnaire-8, an 8-item questionnaire that is derived from the 20-item CPAQ.  While the study I’ve referred to is definitely a preliminary one, and there is more work to be done on it, both the 20 and 8 item CPAQ tap into some important dimensions that examine how willing a person is to get involved in important activities, and to experience pain at the same time.

There are times when all of us will willingly go through pain – having a flu jab, running or exercising further than we’ve gone before, carrying a child when it’s too tired to walk, standing on the sideline at a football game in the cold, or waiting in a queue to pick up tickets to a good concert.  Because the end result is worth it – maybe one of our jobs as pain clinicians is to find out what’s ‘worth it’ to our patients, so they too, can start to live lives doing things that they value despite pain.

Fish, R., McGuire, B., Hogan, M., Morrison, T., & Stewart, I. (2010). Validation of the Chronic Pain Acceptance Questionnaire (CPAQ) in an Internet sample and development and preliminary validation of the CPAQ-8 Pain DOI: 10.1016/j.pain.2009.12.016