uncertainty

Reconciling uncertainty and the drive to diagnose


Recently it was suggested to me that even though I’m an occupational therapist, I might “diagnose”. Not so much diagnose disease, but “determine if a patient is depressed, anxious, catastrophising, fear avoidant etc?” The author goes on to say “isn’t that diagnosis too?” The comment was made in the context of a lengthy Twitter discussion about so-called “non-specific” low back pain. Over the course of I think about five weeks now, a large number of highly educated, erudite and passionate clinicians have argued the toss about whether it’s possible to identify the “cause” of nonspecific low back pain. On the odd occasion I’ve put my oar in to mention psychosocial aspects and that people seek help for many reasons, one of which may be pain intensity, but mostly people ask for help because either the pain is interfering with being able to do things, or because the person interprets their pain as an indication, perhaps, of something nasty.

I mention this context, because over the many tweets, I was struck by the degree of certainty demanded by various commentators on both sides of the discussion. “Where’s the gold standard?”; “What’s the evidence”; “Yes”; “No” – and in many respects, diagnosis is a practice based on degrees of certainty. You either have a disease – or you don’t. You have the signs and symptoms – or you don’t. Unless, of course, it’s the creeping edge of “pre-diagnosis” like my “pre-diabetes”.

In October I wrote about clinical enquiry, which is described by Engebretsen and colleagues (2015) as a complicated process (sure is!) of 4 overlapping, intertwined phases: (a) data collection – of self reported sensations, observations, otherwise known as “something is wrong and needs explaining”; (b) data interpreting “what might this mean?” by synthesising the data and working to recognise possible answers, or understanding; (c) weighing up alternative interpretations by judging; and (d) deciding what to do next, “what is the right thing to do”, or deliberation.

For, irrespective of our certainty about the precision of any particular test or ultimately a diagnosis, all of our work involves two people who must collaborate to follow the process outlined by Engebretsen and colleagues. That is, the person seeking help notices “something is wrong and needs explaining”, he or she communicates selected information to a knowledgeable person (a clinician) and that clinician will typically seek more information, and assemble this in some way (synthesise). In my case I like to do this assemblage in collaboration with the person so we can weigh up or judge various interpretations of that data. I bring some knowledge from my training and ongoing learning, while the person brings his or her intimate knowledge of what it is like to be experiencing that “something is wrong.” There are times when we are both in the dark and we need to collect some more information: for while the person knows what it is like to be in this predicament, there are likely factors not yet incorporated (or noticed) into the picture. For example, guided discovery or Socratic questioning usually involves exploring something the person is aware of but hadn’t considered relevant, or hadn’t joined the dots. I don’t think it takes rocket science to see just how messy and complex this communication and information synthesising process can be – it only takes a person to fail to provide a piece of information (because they don’t think it’s relevant) for the analysis to go awry.

I like the depiction of the diagnostic process described in Britannica.com because throughout the process, the diagnosis is held lightly. It’s provisional. The process of diagnosing is seen as a series of hypotheses that are tested as the treatment progresses. In other words, despite beginning treatment, clinicians are constantly testing the adequacy and accuracy of their clinical reasoning, being ready to change tack should the outcome not quite stack up.

As a clinician and commentator who focuses on the relationship between people with pain and the clinicians they see, it strikes me yet again that the process of diagnosis is often one of relative uncertainty. While it’s pretty easy to determine that a bone is fractured, when pain is the presenting problem and because imaging cannot show pain (and when there are few other clear-cut signs), the clinical reasoning process is far more uncertain.

As I would expect, I’m not the first person to ponder the certainty and uncertainty dilemma in diagnosis. Some of my favourite authors, Kersti Malterud and colleagues (and especially Anne-Marie Jutel!) wrote an editorial for the British Journal of General Practice in which they argue that uncertainty, far from being “the new Achilles heel of general practice (Jones, 2016), instead is absolutely typical of the complexity involved in general practice diagnostic work. They go on to say “The nature of clinical knowledge rests on interpretation and judgment of bits and pieces of information which will always be partial and situated. In this commentary, we argue that the quality of diagnosis in general practice is compromised by believing that uncertainty can, and should, be eliminated.” (p. 244).

In their editorial, Malterud and colleagues point out that the person’s story is essential for diagnosis – and that people have all sorts of reasons for not disclosing everything a clinician might want to know. One of those reasons may well be the clinician’s capability for demonstrating willingness to listen. They also argue that models of disease are social and therefore dynamic (ie what we consider to be disease shifts – pre-diabetes is a good example). People who don’t fit the received model of “what a symptom should be” may not be heard (think of women with heart disease may not present in the same way as men), while those with “medically unexplained” problems just do not fit a disease model.

They make the point that clinicians need to recognise that clinical testing “does not eliminate uncertainty, rather the opposite as it introduces false positive and negative results.” For my money, diagnostic testing should only be used if, as a result of that diagnosis, clinical management will change – and just to add another dollop of my opinion, I’d rather avoid testing if not only does clinical management not change, but outcomes are no different!

I think the call for certainty emerges from what Malterud and co describe as “The rationalist tradition” which “seeks to provide a world of apparent security where certainty is readily achievable.” The problems of both low back pain and many types of mental illness demonstrate very clearly that knowledge allowing us to be certain only covers a tiny amount of the territory of ill health. There is more unknown and uncertain than certain.

I’ll end with this quote from Malterud and co’s paper “Clinical practice must therefore develop and rely on epistemological rules beyond prediction and accuracy, acknowledging uncertainty as an important feature of knowledge and decision making. Nowotny (2016) suggests the notion ‘cunning of uncertainty’ as a strategy where we get to know uncertainty and acquire the skills to live with it.” In occupational therapy practice, uncertainty is always present in our problem-solving process – and consequently I don’t “diagnose”. I never know the effect of a tendency to “think the worst” or “worry” or “avoid because I’m scared” – the constructs it was suggested that I “diagnose”. Firstly because while I might recognise a pattern or tendency – I don’t know when, where, how or why the person may do that thing. And context, purpose, motivation and response all matter when it comes to people and what they do. And secondly, diagnosing suggests that we have a clear and specific approach to treat – and in most of my clinical work, certainty around outcome is definitely not a thing. We never really know if our suggestions are “right” because most of the impact of what we suggest is on the person within his or her own life. In my practice the outcomes ultimately determine how well I’ve worked with someone. Perhaps NSLBP is another of these human predicaments where being certain is less advantageous than embracing uncertainty and an unfolding narrative in someone’s life.



Engebretsen, E., Vøllestad, N. K., Wahl, A. K., Robinson, H. S., & Heggen, K. (2015). Unpacking the process of interpretation in evidence‐based decision making. Journal of Evaluation in Clinical Practice, 21(3), 529-531.

Malterud, K., Guassora, A. D., Reventlow, S., & Jutel, A. (2017). Embracing uncertainty to advance diagnosis in general practice. British Journal of General Practice, 67(659), 244-245. doi:10.3399/bjgp17X690941

Nowotny H. The cunning of uncertainty. Cambridge: Polity Press, 2016

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Ambiguity and uncertainty


Humans vary in how comfortable we are with uncertainty or ambiguity: Tolerance of ambiguity is a construct discussed in cognitive and experimental research literature, and refers to the willingness to prefer black and white situations, where “there is an aversive reaction to ambiguous situations because the lack of information makes it difficult to assess risk and correctly make a decision. These situations are perceived as a threat and source of discomfort. Reactions to the perceived threat are stress, avoidance, delay, suppression, or denial” (Furnham & Marks, 2013, p. 718).  Tolerance to uncertainty is often discussed in relation to response to stress and emotions associated with being in an ambiguous situation, or it may refer to a future-oriented trait where an individual is responding to an ambiguous situation in the present. Suffice to say, for some individuals the need to be certain and clear means they find it very difficult to be in situations where multiple outcomes are possible and where information is messy. As a result, they find ways to counter the unease, ranging from avoiding making a decision to authoritatively dictating what “should” be done (or not done).

How does this affect us in a clinical setting? Well, both parties in this setting can have varying degrees of comfort with ambiguity.

Our clients may find it difficult to deal with not knowing their diagnosis, the cause of their painful experience, the time-frame of its resolution, and managing the myriad uncertainties that occur when routines are disrupted by the unexpected. For example, workers from the UK were interviewed about their unemployment as a result of low back pain. Uncertainty (both physical and financial) was given as one of the major themes from interviews of their experience of unemployment (Patel, Greasley, Watson, 2007).  Annika Lillrank, in a study from 2003, found that resolving diagnostic uncertainty was a critical point in the trajectory of those living with low back pain (Lillrank, 2003).

But it’s not just clients who find it hard to deal with uncertainty – clinicians do too. Slade, Molloy and Keating (2011) found that physiotherapists believe patients want a clear diagnosis but feel challenged when they’re faced with diagnostic uncertainty. What then happens is a temptation to be critical of the patients if they fail to improve, to seek support from other more senior colleagues, and end up feeling unprepared by their training to deal with this common situation. The response to uncertainty, at least in this study, was for clinicians to “educate” care-seekers about their injury/diagnosis despite diagnostic uncertainty (my italics), and a strong desire to see rapid improvements, and tend to attribute lack of progress to the client when either the client doesn’t want “education” or fails to improve (Slade, Molloy & Keating, 2003).

Physiotherapists are not alone in this tendency: There is a large body of literature discussing so-called “medically unexplained diseases” which, naturally, include chronic pain disorders. For example Bekkelund and Salvesen (2006) found that more referrals were made to neurologists when the clinician felt uncertain about a diagnosis of migraine. GP’s, in a study by Rosser (1996) were more likely to refer to specialists in part because they were uncertain – while specialists, dealing as they do with a narrower range of symptoms and body systems, deal with less diagnostic uncertainty. Surprisingly, despite the difference in degree of uncertainty, GP’s order fewer tests and procedures yet often produce identical outcomes!

How do we manage uncertainty and ambiguity?

Some of us will want to apply subtypes, groupings, algorithms – means of controlling the degree of uncertainty and ambiguity in our clinical practice. Some of the findings from various tests (eg palpation or tender point examination) are used as reasons for following a certain clinical rule of thumb. In physiotherapy, medicine and to a certain extent my own field of occupational therapy, there is a tendency to “see nails because all I have is a hammer” in an attempt to fit a client into a certain clinical rule or process. We see endless publications identifying “subtypes” and various ways to cut down the uncertainty within our field, particularly with respect to low back pain where we really are dealing with uncertainty.

Some of these subgroupings may appear effective – I remember the enthusiasm for leg length discrepancies, muscle “imbalance”, and more recently neutral spine and core stability – because for some people these approaches were helpful! Over time, the enthusiasm has waned.

Others of us apply what we could call an eclectic approach – a bit of this, a bit of that, something I like to do, something that I just learned – and yes, even some of these approaches seem to work.

My concern is twofold. (1) What is the clinical reasoning behind adopting either a rule-governed algorithm or subtyping approach or an eclectic approach? Why use X instead of Y? And are we reasoning after the fact to justify our approach? (2) What do we do if it doesn’t work? Where does that leave us? As Slade, Molloy & Keating (2003), do we begin blaming the patient when our hammer fails to find a nail?

I’ve long advocated working to generate multiple hypotheses to explain how and why a person is presenting in this way at this time. It’s a case formulation approach where, collaborating with the person and informed by broad assessment across multiple domains that are known to be associated with pain, a set of possible explanations (hypotheses) are generated. Then we systematically test these either through further clinical assessment, or by virtue of providing an intervention and carefully monitoring the outcome. This approach doesn’t resolve uncertainty – but it does allow for some time to de-bias our clinical reasoning, it involves the client in sorting out what might be going on, it means we have more than one way to approach the problem (the one the client identifies, not just our own!), and it means we have some way of holding all this ambiguous and uncertain information in place so we can see what’s going on. I know case formulations are imperfect, and they don’t solve anything in themselves (see Delle-Vergini & Day (2016) for a recent review of case formulation in forensic practice – not too different from ordinary clinical practice in musculoskeletal management IMHO) . What they do is provide a systematic process to follow that can incorporate uncertainty without needing a clinician to jump to conclusions.

I’d love your thoughts on managing uncertainty as a clinician in your daily practice. How do you deal with it? Is there room for uncertainty and ambiguity? What would happen if we could sit with this uncertainty without jumping in to treat for just a little longer? Could mindfulness be useful? What if you’re someone who experiences a great deal of empathy for people who distressed – can you sit with not knowing while in the presence of someone who is hurting?

 

Bekkelund, S., & Salvesen, R. (2006). Is uncertain diagnosis a more frequent reason for referring migraine patients to neurologist than other headache syndromes? European Journal of Neurology, 13(12), 1370-1373. doi:http://dx.doi.org/10.1111/j.1468-1331.2006.01523.x
Delle-Vergini, V., & Day, A. (2016). Case formulation in forensic practice: Challenges and opportunities. The Journal of Forensic Practice, 18(3), null. doi:doi:10.1108/JFP-01-2016-0005
Furnham, A., & Marks, J. (2013). Tolerance of ambiguity: A review of the recent literature. Psychology, Vol.04No.09, 12. doi:10.4236/psych.2013.49102
Lillrank, A. (2003). Back pain and the resolution of diagnostic uncertainty in illness narratives. Social Science & Medicine, 57(6), 1045-1054. doi:http://dx.doi.org/10.1016/S0277-9536%2802%2900479-3
Patel, S., Greasley, K., Watson, P. J. (2007). Barriers to rehabilitation and return to work for unemployed chronic pain patients: A qualitative study. European Journal of Pain: Ejp, 11(8), 831-840.
Rosser, W. W. (1996). Approach to diagnosis by primary care clinicians and specialists: Is there a difference? Journal of Family Practice, 42(2), 139-144.
Slade, S. C., Molloy, E., & Keating, J. L. (2012). The dilemma of diagnostic uncertainty when treating people with chronic low back pain: A qualitative study. Clinical Rehabilitation, 26(6), 558-569. doi:10.1177/0269215511420179