There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.
Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:
- Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
- Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
- Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
- Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
- As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
- Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.
I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.
In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:
- No-one told me my pain would persist.
- Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
- Pointing to the presence of supposed pathology – “you’ll need surgery”
- “what we’re doing isn’t helping” – despite best efforts.
- Being put into a category of people who can’t be helped.
- No-one showed me how to live with this pain
- Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
- I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
- The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
- You have chronic pain and there’s not likely to be a cure in your lifetime.
In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …
Here are a few questions:
- When do we admit we don’t have a 100% success rate for treating persistent pain?
- Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
- Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
- Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
- What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
- If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?
I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.
Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.
Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411