What a generous host with questions that got me thinking – and I hope my answers also get people thinking too.
My response to comments is that at this time self-efficacy (confidence you can do things despite your pain) is really low. Self-efficacy, like love, isn’t a finite resource though, although the energy required to keep on coping (balancing all the multiple demands that persistent pain has on you) can exceed current capacity. Both self-efficacy and energy are renewable resources and change over time. Love expands as we add to it. Self-efficacy increases as we have more successes. Energy renews as we find ways to fill our buckets up faster than the holes leak it out.
This post was written for health professionals, health professionals who may be inadvertently undermining what little self-efficacy an individual has by promoting a focus on what they do, rather than on what the person is using to deal with their situation. Health professionals who may well be told they must record pain intensity before and after Every. Single. Treatment. Who may not recognise just how much effort it has taken for a person to come in for a session – especially when feeling guilty or ashamed that “homework” hasn’t been achievable.
I think pain heroes do need to be celebrated. All we hear about in the media are people suffering, wanting techno-fixes and ways to get rid of their pain without recognising that for many people pain reduction just is not possible. For those who are able to live well, why not applaud their efforts – I’m not talking about their ability to get rid of their pain, but their ability to remain focused on what gives their life value and meaning – even if that’s a small fraction of what they were able to do prior to developing their pain.
I get that sometimes “pain heroes” who do amazing feats are held up as “normal”, but at the same time that’s not the story played out in most of our general media, I wonder if it’s more like the stories bandied about as examples of the latest new-fangled treatment. I often wonder if there were long-term follow-ups carried out on those folks, would they still be as positive as they were at the time their story was made?
Pain reduction as a goal doesn’t improve confidence to do activities successfully despite pain. Except in as far as a paper cut might not interfere as much with doing life as a migraine. At least some of the confusion arises from misinterpreting the measure: Pain Self Efficacy Questionnaire specifically uses the phrase “despite pain”, but I often hear people describe it as if it was “without pain”. Perhaps there needs to be a different measure “Self Efficacy Questionnaire for Doing Things With Only A Little Pain”, but currently the only measure of pain self efficacy is the one developed by Michael Nicholas.
I think it’s easy to misinterpret research about resilience as if it’s suggesting “thinking yourself out of pain” is the goal. It’s not. And that study in particular doesn’t say that, while neither did mine. In fact, “thinking yourself out of pain” isn’t achievable – good research suggests that attempting to suppress your attention to pain actually rebounds. It’s also not Pollyanna and pretending that pain doesn’t have an impact. What I think it is is a process of coming to grips with the fluctuations we all experience with pain and energy, recognising what we can and can’t do, being unafraid of our pain and knowing that it’s not going to kill us (though we may wish we could die from time to time), and finding small ways to go with our pain rather than fighting against it, wishing it wasn’t present, pretending it doesn’t have an effect when it does, trying to ignore it, or buckling underneath it and losing ourselves.
In the pain management services I’ve worked in, and the approach I take both for myself and with the people I try to work with, using pharmacological, neuromodulatory, surgical and procedural approaches to reduce pain has always been integral to the overall plan. Sadly I have not found anything that provides any pain reduction for me, I have no option but to keep going without anything. If there are things that reduce pain – and the side effects, adverse effects, or interference with the way you want to live your life are acceptable – that’s fantastic! The distinction I made in my post is the focus on pain reduction as the primary outcome. The sense that life cannot go on without pain reduction. The thing is, life does go on whether we’re part of it, or not (and of course we can choose not to go on, but that’s death, and not an option I’d ever recommend). So, one foot after another, life does go on. I’m arguing for more than a focus on pain reduction. Because that seriously is the only outcome considered by some professionals – and some people with pain. And in pursuing only pain reduction, people lose sight of what already is going on around them. Life goes on hold, and people spend all their energy, time, and focus on how to get rid of pain. That is not living.
Wouldn’t it be great if we had something for those who find their pain overwhelms them. Sadly after working in this field for 30 years I do not think we are any closer to that elusive goal than we were when I began, except perhaps people aren’t going through quite so many useless and invasive surgeries with really nasty side effects as they did in the 1980’s. Do you not think there are so many people already seeking new and innovative treatments? And what would you like to have happen to those who may never see any of those new treatments reach them? It does not have to be an either-or situation.
What I’m finding is there is so much emphasis on pain reduction that few people are willing to provide what is already known to help people’s distress and disability. The unsexy, somewhat boring-but-necessary evils of self-regulation, reframing pain, setting teeny tiny goals, maintaining consistency, activity management, day in and day out exercise programmes, plodding through each small bump along the way. That is the reality for the many, many people who have, like you, not found anything wonderful to whisk the pain away. Demanding better treatments may not bear fruit in your life time. The only new class of analgesics are the triptans for migraine, and they were first discussed in the 1960’s, and only released onto the market in the 1990’s. Do you think there’s something hidden away for only “good” people? Seriously, there is SO much research being undertaken for all manner of wonderful treatments – but I haven’t seen much of this bear fruit in the way that you and all the other people who live with persistent pain would really like. Including me.
So, let me say, in case it wasn’t clear.
I am NOT suggesting there should be no medical interventions for people.
I AM cautious in terms of how successful they are (that’s me, the skeptic, been doing this for long enough to see the trendy things fail in the real world).
I AM suggesting it’s not worth putting life on hold in the hope that there MAY be something “just around the corner” because that’s not the case right now.
I AM arguing that clinicians who focus on pain intensity as the exclusive outcome that matters need to stop and think about what it is that people want to DO with that newfound energy if their pain did suddenly disappear.
Sometimes, in fact often, those things can be done with pain alongside. So it hasn’t happened in many people’s cases – that’s because pretty much nothing DOES work for everyone. But that doesn’t mean we should stop working really hard to continue to help people do what they can do, not letting what they can’t do get in the way of what they can.
And that is what I try to do both personally and professionally, as a person, clinician and educator.
Live Stream package details: Watch the conference on Feb. 23-24 in real time. Note that the conference occurs in Pacific Standard Time. Participate in Q&A and prize drawings.
Package includes 1 year membership to Pain Summit Online, beg. March 1, 2019. Membership includes access to all presentations from 2015 to present. The 2019 presentations will be uploaded sometime in the first few weeks of March.
Live Stream video contains a lag, so you can rewind hours later to watch something you missed.
Approved by the California Physical Therapy Association for 1.15 CEUs or 11.5 hours.
Link to register: https://sandiegopainscience.com/registration-2019/live-stream
Registration closes at 11pm PST on Feb. 22
Discount code for 25% off at checkout: T9SQZGM
A series of short videos on communicating in the clinic.
Tough topic one – setting the scene
For some of you, the New Year has already started, but I’ve been in a lovely position where I’ve been on leave and haven’t yet started “work” – though the work of living is always present!
It’s traditional at this time to year to review the past year and plan for the coming months, so today’s post is a few musings on both.
Last year I noticed I’d been working on this blog for nearly 10 years! Astonishing really, because it was intended to be a learning experience for me during my recovery from a mTBI. It kinda grew like Topsy, and here I am 10 years down the road still blogging, albeit not so often as in the first couple of years. Over that time I’ve commented on a whole bunch of articles, made a few blunders, and put my thinking out in the public arena in a way that Academic journals just don’t really allow.
Some people would argue that my analysis is lightweight because I don’t leap into the depths of statistical analysis and research design in my commentaries. Others think I spend far too much time pondering the psychosocial and – how could I – omitting the biological. Some don’t like my reference to a biopsychosocial “model”, while others wonder what an occupational therapist is doing writing about pain psychology.
Blogging is a personal pursuit without written rules. I muse about things as part of my own processing, plus to hopefully put some useful content out online for those who don’t have the pleasure of ready access to articles. I’m interested in some of the research questions even poorly conducted research articles can pose. I’m intrigued by the relevance (or not) of findings to my own setting here in NZ. I’m fascinated by connections drawn by authors as they ponder the implications of their research question, findings and works by other people.
I write about topics that mean something to me. It’s a completely personal selection, reflecting papers I’ve recently read, topics discussed in social media, patients I’ve seen, and conversations I’ve had.
What’s the impact of blogging on anything or anyone? Well, that depends on the kind of “impacts” you’re talking about. Through blogging I’ve made contacts with clinicians and researchers (and social media people) from around the world. I’ve been able to contribute to some pretty special meetings. I’ve been asked to speak, to write, and have been in touch with so many people who have got in touch with me because of this platform.
My aim apart from satisfying my own curiousity, is to share information and help to translate from academic journals to the real world. Information locked up in journals isn’t likely to help a clinician who can’t access them! And reading, reflecting on, and integrating research into daily clinical practice is difficult. I hope some of what I write about helps to bridge that gap.
Why would an occupational therapist from New Zealand do this? Well the first question I’ll answer is why an occupational therapist – why not? And because occupational therapists are possibly the ultimate scavengers in terms of taking something that’s been explored by another discipline and applying it to their client’s own real-world setting. Occupational therapists apply clinical reasoning to help people DO in the real world, so in a sense we’re really translational scientists, applying what’s known from research into the unique context of our clients and what they need and want to do. As an occupational therapist I think I bring some unique skills to the process of translating research to clinical practice, and besides, I’ve been in this field for a few years now, so I want to temper some of the enthusiasm for whizzbang new things with some of the wisdom from older research. You know, the 1980’s and 1990’s produced some really foundational research in pain and pain management.
Why from New Zealand? What does NZ have in common with the “rest of the world”? We’re a relatively well-developed country, with a partly socialised healthcare system that struggles with many of the same problems as other developed countries with or without a socialised healthcare system. NZ struggles with a biomedically-dominated model of disease holding sway, limiting the availability of allied health professionals who focus on a more wholistic (no, it’s not a dirty word) view of health and wellbeing. Allied health professionals everywhere in the world have difficulty being heard over the clamour of medicine with it’s one-shot, high-tech and super-simple view of disease. Our work is not sexy. Our work involves being with people, and our currency is the time we spend communicating with people. We don’t rely on a brief consultation and a quick flick of a prescription, a jab of a needle or a slice of the knife. Our work is about messy human life, behaviour change, taking the time to listen to what’s important to our clients/patients and step-by-patient-step supporting them to achieve their goals.
Over the 10 years I’ve been writing, I’ve constantly heard bickering between various factions in allied health care. Mainly <puts on teacher face & granny glasses> amongst physically-oriented therapists. Mainly about trivia as to whether treatment X is “better than” treatment Y. Niggling time and again over ridiculously inflated claims, “trademarking” approaches that have been in practice for oh at least 30 years, heated arguments about whether nociception is important (well of course it is, duh), whether biomechanics is important (well yeah, just not all the time wrt pain), whether tape/laterality/neural stretches/posture/”correct technique” and on ad nauseum is crucial. Meh. The differences between us all are far less than the commonalities – and it’s only with the commonalities that we’ll actually make a change to the way pain management is done here in NZ, or the rest of the world.
So this year I intend to focus even more on allied health pulling together, looking for what we have in common, drawing comparisons with a reductionist model (whether that’s biomedical or biomechanical), and encouraging us to get involved in system change. Are you with me?
So 2016 is over, and 2017 is here. As usual, I find the new year to be a time for reflecting on what is important in life, and what I’d like to see more of this year. Usually I’ll want more balance. More space between frantic activity. Maybe even less frantic activity! And I pretty much always want to learn something new. But this year I want to be a bit different. Yes I’ve been thinking about what’s important, and yes I want more balance, but this year I want to work on a new project as part of this blog.
I’ve been writing for so many years, and one of my main reasons for doing so is to bridge the gap between what’s found in research, and what clinicians are doing in their practice. I want to inform and I want to infuse that information with a strong sense that alongside what we know from research we need to remember these things:
- We work with people – not doing things TO people (even if we do things to people), but we have a window of maybe an hour in a clinic in which everything we say and everything we do is pondered over by the people we see. And believe me, people will interpret what we say and do and then make their own decision about what happens next.
- We could all become a patient. That’s a bit humbling because we don’t expect we’ll develop a problem, but pain is indiscriminate – it will affect anyone and everyone. Trouble recovering is somewhat more discriminating – some people are at more risk than others, but here’s the thing: there are SO MANY variables that have been known to influence recovery that we can never be truly certain that we’ll be able to dodge that bullet. So, you and I can become a patient, and our recovery may also be complex, and we may need to swallow the bitter truth that rehabilitation is plain hard work.
- People don’t exist in isolation. Most of our treatment philosophy and techniques focus on the person with pain. Just that person. Not their family, their employer, their friends or colleagues or mates. Just that individual. But we know that people live within a community. And that community is pretty big – especially when we think of the connections made around the interwebs! And for every time we see “a person” we ALSO need to see “a person-in-context”.
- We get it wrong. We all do. We fail. We don’t reason clearly. We get hooked up in our own biases. We ignore things. We look for things that confirm our own beliefs. We notice things we want to notice, and conveniently ignore things we don’t want to notice. And we often don’t even know we’re doing it. That’s a constant and ongoing tendency we all need to work hard to counter.
- Research often omits important variables. This world is complicated. There are so many factors influencing what happens, when, where and why. Researchers can’t control everything. And because people are messy, complicated and ornery beings, the people we see (and ourselves) don’t always fit within the parameters of what’s been found in a research study. This doesn’t mean research findings aren’t important, it just means we need to temper our tendency to adopt a new and groovy thing just because a piece of research suggests it’s very cool. And we need to recognise that, especially here in NZ, studies conducted elsewhere in the world may not work as well here in our country. And that applies everywhere and to all human-oriented research. Context is critical. What people want and believe in is also critical. Qualitative research begins to bridge the gap between experimental designs and individual variability – but it’s often considered less valuable than quantitative research.
- People living well with chronic pain need to inform our practice. Why? Because we can learn so much from people who have been able to see life differently. Who have taken gems from wherever they’ve found them, been able to integrate those gems into their daily lives, and are now in the best position to help us learn what worked for them – and most importantly, why it’s worked.
- We’re biopsychosocial beings. People are biological beings, with psychological processes that influence their actions, many of which have been picked up from the social context in which they live. Those psychosocial factors are integral to living, not some add-on, after-the-fact mess that only applies if our treatments don’t work. We ALL actively process what happens to us, and interpret these things in light of what we already know and what we think might happen next. Yes I know this model is incomplete. I know some people can think of it as reductionist. Others think it’s messy and non-scientific. Still others believe it’s useless and impractical. But whether it’s an “accurate” way of thinking about people or not, I think it can be a helpful framework from which we can begin to explore situations where people are involved.
The new project
I’ve written thousands of words. Usually about 1200 once a week on this blog alone. My intention this year is to collate that writing and sort it into some semblance of order. I intend to post short summaries on topics and link to some of my older work for details. And maybe, just maybe, there could be a book at the end of it! Whatever I manage, this year I will be learning new things, and I will be posting them up here. So keep visiting! Ask questions and comment. Be part of the conversations that can change our approach to helping people with pain. Want to join me?
Do you recommend pacing as a strategy for your clients/patients? If so, would you please consider taking part in a survey I’m conducting, looking at health professional’s beliefs about the underlying motivations for using pacing. The findings from this study will inform a future study in which I will explore the daily use of pacing as a strategy by people who live with chronic pain. The usual ethical consents have been granted, and your involvement is entirely voluntary, confidential, and anonymous.
I’m looking for health professionals from any discipline, but only if you personally recommend pacing to your clients/patients.
Please spread the word!