Author: Dr Tony Williams FFOM
Date: 21 November 2015
Patients attending a consultation with chronic pain (or any other 'unexplained' symptom such as chronic fatigue, IBS, dizziness) will have usually already seen a number of clinicians. They may well have tried a number of different treatments and they are likely to have been told different things about their symptoms, the cause, and the optimum treatment. They may be confused and frustrated, and this combined with any catastrophisation and hypervigilance can lead to fear of the future and a defensiveness in the consultation. They may have been told there is no underlying pathology and may interpret this to mean that the clinician does not believe them when they say they have pain or fatigue. The approach taken, and choice of words, needs to be undertaken with care and understanding.
It is important to give some explanation to the patient, bearing in mind that terms can be misunderstood or misinterpreted. It can be useful to explore the terms that have already been used, and the patient's views; for example if the patient has the common combination of fatigue with pain, they may prefer the term 'Myalgic Encephalitis' to 'Chronic Fatigue Syndrome', or they may prefer 'Fibromyalgia' to 'Chronic Widespread Pain'. Using a term they do not like may doom the consultation to failure from the start.
It has been argued that a rational explanation, while imperfect, makes sense to both doctor and patient and promotes appropriate action. Just informing the patient that tests are negative may not be reassuring, as the patient may begin a cycle of anxiety and relief-seeking through further investigations and assessments.
Burton et al have suggested using a model with four categories of explanation, 'normalising', 'biomedical', 'psychosomatic' and 'biopsychosocial'(Burton et al., 2015). They also suggest at times non-explanation and acceptance of uncertainty may need to be considered. Their ideas are summarised below:
Normalising involves conveying the messate that the patient's symptoms are within the broad scope of normal experience. If the patient sees this as 'dismissal' or 'inappropriate explanation' which fails to engage with the patient's concerns, this approach fails. It works when engagement is constructive, the explanation of symptoms is plausible, blame-free and facilitates therapeutic partnership.
There is increasing recognition that there are physiological mechanisms implicated in producing symptoms. These include alterations in autonomic function, endocrine regulation, immunity and central sensitisation. These can lead in turn to changes in, or altered perception of, processes including gastrointestinal motility, balance, musculoskeletal activity or pain. While not the sole explanation for any MUS syndrome thay are likely to play a part and may be useful as components of constructive explanations.
The concept that the underlying cause of MUS is some form of unresolved or unexpressed mental distress lies behind somatisation. Stress is often a key initiator, and linking severity of symptoms to stressful life events may help a patient relate their condition to mental distress. Many patients, however, may find this challenging; they may worry that all future symptoms will be attributed to psychological factors. While it is important to explore this area with the patient, care should be taken, It can be more successful where it is combined with a physiological mechanism as in the biomedical approach above.
The biopsychosocial model combines the biomedical explanations with psychological processes, in particular somatosensory amplification, catastrophisation and hypervigilance or symptom focus.
Overall, the aim should be to assist the patient in making sense of symptoms. Where there is uncertainty, it can be helpful to note that doctors often see patients with unexplained symptoms and often patients just accept their symptoms and carry on with normal activities. They often find they are able to engage fully with normal activities in spite of their symptoms. Evidence for treatments that can help patients cope with symptoms and engage with normal actitivies can then be introduced to the consultation.
Perhaps the best approach is to consider the patient's main concerns. A useful approach is to ask early in the consultation 'what is it that worries you about your symptoms'(Mackie and Frank, 2015). This can guide the clinician towards the best model to adopt during the consultation, to consider the most supportive therapy, and in particular to look at appropriate adjustments to help the patient re-engage with activity and work. Some patients may worry that they will be harmed by an activity, others that they may not cope with an activity.
It is always important to be aware of potential secondary gain in any consultation about MUS. A patient can have a number of reasons for wanting their ‘condition’ to persist, and to exaggerate their symptoms to this end. This can include avoiding engagement with activity at home or at work, financial gain from insurance or early ill health retirement, or manipulation of others at home or at work. Some may simply be unable to accept the potential cause of their symptoms, and therefore must not respond to therapy as responding may prove there was no physical cause.
While it is important to keep an open mind through the consultation, where the patient is clearly defensive, refuses to engage in any discussion about cause, treatment or prognosis and simply wants the clinician to endorse their own view of their condition, secondary gain may be involved. Consultations involving MUS can in these circumstances become very toxic, and the outcome can be fraught. Clinicians have experienced significant harassment including death threats where they have not endorsed the patient’s view. This has been a particular problem with research, and the latest attempt to review CFS in the USA was unfortunately substantially affected by pressure from patient groups(Lancet 2015).
There are no simple guidelines to managing consultations in these circumstances. Occupational Physicians have to remain independent and objective in reporting and need to be prepared for challenges when giving opinions on insurance and ill health retirement. The GMC is aware that vexatious complaints are common in these circumstances, and while they are obliged to consider the complaint they also understand the issues facing doctors in these circumstances.
Lancet 2015. What's in a name? Systemic exertion intolerance disease. Lancet, 385, 663.
BURTON, C., LUCASSEN, P., AAMLAND, A. & HARTMAN, T. 2015. Explaining symptoms after negative tests: towards a rational explaination. J RSM, 108, 84-88.
MACKIE, S. & FRANK, A. 2015. Communication with patients before and after diagnostic tests. J R Soc Med, 108, 384.