3832words +Refs
JMS Pearce MD.,FRCP
Emeritus Consultant Neurologist, Hull Royal Infirmary
All correspondence to: 304 Beverley Road, Anlaby, Hull HU10 7BG
jmspearce@freenet.co.uk
The person presenting the picture of a so-called chronic disability syndromes is either a patient or medicolegal claimant. He/she is apparently disabled by somatic and less often psychological complaints that are, despite investigation, without adequate medical explanation. He has severe limitations in the activities of daily living, recreation, sports, and the ability to perform their normal work. Chronic pain and tiredness are the most common elements. Psychological illnesses are frequently invoked and are often a genuine source of suffering and disability. However, patients who may be rewarded by large financial settlements in courts, may also on occasion exaggerate their claims. This paper attempts to examine the possible mechanisms of these symptoms. The growing number of patients with chronic disability syndromes pose serious problems. They are a burden on medical resources; many follow personal injuries and consume time and huge expenses in hearings in civil courts . health professions commonly assume that these are all genuine cases, which many are. This paper argues that there is a danger of blindly accepting the authenticity of all such claims, and of providing a medical diagnosis that would not bear serious consideration in non-litigation clinical work; such diagnoses also ignore the imperative of financial reward. This affords it a social and legal acceptability, which is not always justified by logical and scientific evidence.
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Disability syndromes are commonly seen in patients with chronic fatigue syndrome, low back pain —especially after back injuries, the late whiplash syndrome, fibromyalgia, chronic temporomandibular disorders, repetitive strain injury, multiple chemical sensitivities, sick building syndrome, Gulf war syndrome.
Although these symptom-complexes are diverse, they have several features in common. Such patients present to the clinic with the superficial suggestion of organic disease, yet they display a dearth of objective abnormalities. Symptoms are variable but generally refractory to treatment. Some have clear cut depressive, anxiety or phobic illnesses, but in others the doctor often observes:
1. a discrepancy between the claimed initiating cause and the severity or duration of symptoms and the consequent disabilities,
2. anomalous behaviour during examination: ‘inappropriate or spurious signs,’ a miserable demeanour, grunts and grimaces,
3. claims of mood swings, frustration and irritability, but denial of anxiety, phobias or depression,
4. disabling symptoms resistant to conventional treatments.
The patient appears to adopt the sick role or shows illness behaviour that lends a distinct, recognisable flavour to the claimed illness. Society then allows the sick subject into the sick role— regarding him as suffering from a medically acknowledged illness.
A definite event commonly precedes the onset. It may be a ‘viral infection’, an accident at work, a road traffic accident, or exposure to an environmental hazard. The victim then adopts the event as a focus for the start of an illness; friends and colleagues then accept the illness thus allowing, entry into the sick role with no fault on his part.
These illnesses are often cast in a multidimensional or biopsychosocial
model. This jargon implies that organic, psychological, and social factors
determine the patient’s behaviour. The importance of organic (biological)
factors, and non-organic (psychological and social) factors is often in
dispute. A diagnosis of non-organic illness carries the strong implication of a
finite psychological disorder.[1],[2],[3],[4],[5]
A more practical view is that an incident or injury, sometimes with organic consequences is the initiating event, but that non-organic social factors perpetuate and may distort the subsequent course.
The intractability of their symptoms means that physicians and other therapists have failed to cure or provide adequate symptomatic relief. Psychological illness is usually suspected, or misused as a dismissive label. These patients often come before disability review boards and Courts, who in turn struggle to understand the basis of the ever-growing claims of disability and attempt to provide fair judicial assessments and rewards.
The evident discrepancy between the primary illness or accidental injury may be explained by several complicating issues (Table 1.)
Unrecognised injuries such as a fractured scaphoid can obviously cause symptoms, but these are usually discovered and then symptoms are not regarded as excessive. The possibility of obscure pathology has led to the notion of ‘subtle’ subclinical , or ‘molecular’ damage sustained during an accident that physicians cannot define, but which might account for the extraordinary severity and duration of symptoms. The difficulty with this idea is that it is both speculative and intrinsically untestable. It is therefore useless from a scientific standpoint.
Chronic tiredness, inertia and insomnia are common in the population, often without evidence of physical or serious mental illness. These symptoms in many clinical contexts however are neither severe nor disabling. A new accident or illness can call attention to such pre-incident problems. Similarly, there is a large number of people suffering from frequent backache[6], neck pain[7] and headaches[8],[9], who are able to continue their normal jobs. Inappropriate loss of earnings may be apportioned by a sympathetic Judge to a pleasant and plausible plaintiff who declares both unending devotion to the work he/she loves, and frustration at being incapable of resuming such work.
The continuation or developments of symptoms or illnesses present before an accident [10] is common. For example, at the age of 40, about 40% of the population have significant degenerative changes (spondylotic) in MRIs of the spine. Such a potential source of neck or back pain and stiffness will not disappear in someone who has suffered a minor injury[11], but it may account for some or all of the succeeding symptoms, yet be diminished or denied by the accident claimant.
Anxiety, phobic state, hysterical conversion, and depression and psychological distress may precede and cause chronic pain; conversely, in others, psychological distress is a consequence of chronic pain. [12] It is rare in claimants for compensation to find pain alleviated by invasive procedures, but on such rare occasions when pain subsides, neurotic and depressive complaints can disappear. Some claimants suffer from genuine psychogenic illnesses. In whiplash injury however, Radanov et al.[13] found that psychosocial factors at injury do not predict the outcome, though “neuroticism correlated with the initial pain intensity”; they are an acceptable explanation in only occasional complainants.
Pre-accident neurosis or depression often continues after injury. They often colour the description of complaints, but that is not attributable unless relevant psychological deterioration is demonstrable. One psychiatrist view is that: ‘Once settlement is achieved…Those who have a deep psychological need to be in the sick role, stay sick, or perhaps even become worse, having had the legitimacy of their behaviour endorsed by the court. ‘[14]
Being irritable, frustrated and fed-up are common reactions, but do not per se constitute clinical depression.
Psychologists’ assessments are often appended to claims.
Many rely more on a succession of standardised scales, e.g. for depression,
general health, post-traumatic stress disorder, than on clinical features individual
to the patient. Many tests rely on questionnaires, which provide a large number
of leading questions suggest positive responses. There are more than 40
Instruments for Quality of Life Assessment focussed on chronic pain or illness
behaviour. An Illness Behaviour Questionnaire (IBQ) attempts
to validate the concept. However, when subjected to scientific scrutiny it is
unconvincing. A factor analysis [15]of responses from 1,061 individuals indicates that
“the IBQ is saturated with neuroticism, a dimension known to be related to excessive medical complaints. But, it is concluded, excessive medical complaints cannot be equated with hypochondriasis or illness behaviour in the absence of objective medical information. In the absence of evidence for the discriminant validity of the IBQ, its use as a diagnostic device is unwarranted…“
Though useful in other contexts, by strict standards they are scientifically flawed because many patients quickly learn the expected response. Unfortunately this may add to their distressing symptoms. Schmand et al have indicated that the prevalence of malingering or cognitive underperformance in late post-whiplash patients is substantial, particularly in a litigation context.[16] Since they are not trained to judge clinical and radiological signs, which form an essential part of the assessment of exaggeration, psychologists’ appraisals can on occasion lack objectivity.
When financial rewards are at stake, it is not surprising that exaggeration can occur. Malingering is a dangerous term, and is unacceptable without good evidence. Simulation of illness and deception are patterns of behaviour consciously chosen, and should not be interpreted as psychological illness. Medical expert witnesses should suspect exaggeration as probable if one or more of the features in Table 2. are present:
Deliberate exaggeration can be motivated by financial reward and by increased attention and sympathy. Family and friends are often unwittingly entwined in a complex social disorder of assumed invalidity that may be masked by the euphemisms: "sick role", "illness behaviour", and "chronic pain syndrome". These terms are commonly used in reports, but are unhelpful since they afford neither an explanation nor validation for symptoms. They restate the problem but fail to verify its cause.
Occasionally, plaintiffs and experts may mislead Judges. Understandably, judges find it difficult to imagine that a plaintiff will submit to (ill-judged) surgery. Nevertheless, surgeons are commonly persuaded to operate on such patients in the altruistic endeavour of doing something to try to aid recovery; but benefit seldom accrues. Patients commonly subject themselves to surgery and other physical therapies if the perceived rewards are sufficient. They may abandon worthwhile and remunerative work without adequate medical cause: Lawyers then ask the Courts to recommend payment for future loss of earnings.
Psychosocial
factors mechanisms.
Incidental, or psychological distress consequent on the circumstances or organic sequelae of injury can certainly amplify symptoms and their effects. 7,[17],[18],[19] This is typical of psychosomatic disorder or somatisation. An initial organic illness, such as the influenza or a soft tissue injury forms the substrate upon which psychological factors act.[20] Examples are depression worsening any organically caused pain; but psychological elements often complicate the ill-defined syndromes of fibromyalgia and chronic fatigue. Minor, harmless symptoms are felt to be more severe and thus may threaten the individual with the prospect of serious disease. Patients become preoccupied with symptoms that appear to them as a progression or worsening of the disease. If a doctor gives them a medical label, the expectation of chronic pain and disability may increase.
False Diagnoses as comforts
Psychosocial factors often lead to an erroneous attribution of the basic cause by the patient —‘mistaken symptom attribution’. 3,[21] Unfortunately, physicians are particularly prone to proffer labels of convenience, in the mistaken belief that the possession of a diagnosis affords some comfort or satisfaction to the sufferer. The recipient may wrongly believe that the diagnosis means chronic disease, more pain or fatigue, which will then reinforce this mistaken notion: a vicious circle. Because fatigue or pains have many causes, the patient seldom knows if the incident that started their symptoms is still the cause. Coincidental intercurrent sources of symptoms, for example a viral infection, or non-specific ‘rheumatic’ pains or an attack of capsulitis or a back or neck sprain may be wrongly regarded as a relapse, linked to the original (attributable) event.
Symptoms must, appear respectable and socially acceptable to the patient: a manifestations of physical illness. This needs the sanction of a physician. Despite much progress in psychiatry, mental illness is still often stigmatised, or thought to be a sign of moral weakness by many members of Western societies. Thus, patients find an organic label more acceptable.21 The behaviour of some doctors and other health professionals still contributes to this fallacy.
The literal language of psychiatry allows motivated actions to be called 'diseases' Other branches of medicine have also fallen into this trap of flawed science and false logic. The adoption of inappropriate diagnoses is sadly reflected by a minority of doctors who make fashionable diagnoses that encourage further fee-earning business.[22],[23], They may feel virtuous by acting as the patient's advocate and by denying that the ‘illness’ is non-organic, simulated, or psychogenic[24]. Some seek the tertiary gain to justify their own personal inadequacies by leaving the patient superficially pleased and the physician self-satisfied. The sanctions afforded thereby to the patient may therefore serve many needs, not least placing the health care professional in the role of gatekeeper.
We must now consider the purpose or aims of the illness to understand the behaviour of patients and their readiness to adopt the sick role.
Most societies accept sickness or the appearance of illness as a genuine state for which sympathy, care and consideration are merited. The patient appears ill, and it is not his or her fault. The no-fault sick role is obvious in the case of cancer, diabetes, a stroke, or other self-evidently organic diseases. By contrast, psychological illnesses are unfortunately less easily granted the same attention and sympathy. For example Aaron et al[25] found that, with similar presentations, fibromyalgia patients who reported their symptoms following physical trauma were much more likely to have disability compensation than those reporting very similar symptoms after emotional trauma.
In many chronic pain complaints, pain behaviour may reflect a general belief about health and illness or the way one is expected to react or behave to a painful disease.. Pain behaviour predicts absence from work. Many data[26] emphasise the potential social implications of pain behaviour and its importance in maintaining the sick role
The status of being sick grants the patient relief from their expected social and occupational responsibilities.[27],[28] The sick person’s incapacity is not perceived as something for which he is responsible and he is therefore not at fault. If there is an admission of psychological symptoms, they may not be acceptable as the cause, but may be conceded only as an aggravating factor complicating the primary organic illness or injury.
A situation where one is readily granted the sick role caused by psychological disorder is Post-Traumatic Stress Disorder. Although such a diagnosis can reflect a psychological disorder, the patient is typically judged to have been exposed to a psychological trauma of great severity, that is not their fault. The sick role is believed, and therefore is easily adopted. However the criteria for PTSD are entirely subjective, and have been separated from long established psychiatric diagnoses and syndromes, by nothing more substantial or testable than the consensus of a series of sagacious committees[29],[30]
To understand the effects secured by disability, one must appreciate that there are several benefits of the sick role—secondary gains. Although a life incident can create disadvantages in personal and social terms, these can be offset by secondary gains, which then become the main motive for further complaints and behaviour. This can be misconstrued as psychological illness.
Primary gain occurs when
a physical symptom relieves the anxiety or inner conflict of the unconscious
mind.[31] Conventionally we interpret this as conversion
hysteria. The symptom acts as a dramatic focus, the result of a physical
illness, and thereby attracts both sympathy and attention. This is the gain. A
woman who strikes her child in anger and nearly causes a serious head injury;
may feel tremendous guilt. The next morning she wakens, her right arm
paralysed. Her guilt is relieved by the appearance of a dramatic symptom that
may divert attention from the act and lessen her sense of guilt. This is the
primary gain; though, she may not recognise the mechanism: an hysterical
conversion.
One might expect that distressing symptoms would prompt the patient to seek urgent medical attention (e.g., for pain, paralysis, and blindness). However, these patients though complaining bitterly of the intensity of their pains paradoxically often consult doctors several days after a minor accident. Further, such illnesses generally regress within a short time, once appropriate treatment is obtained and the source of conflict has been eradicated or suppressed. This contrasts with the protracted symptoms, lasting months or years characteristic of chronic disability syndromes. Primary gain is therefore unacceptable as a factor causing the disability syndromes considered here, nor are Conversion Disorders, (DSM-IV)[32] conversion reaction or hysteria, appropriate terms.
The patient with Conversion Disorder subconsciously, not consciously, seeks secondary gains. When the symptom displayed leads to relief of distress and anxiety, then primary gain is achieved. Patients with the disability syndromes appear distressed and anxious. If their disabling symptoms arose through primary gain, we would not expect such concern and distress.
All these considerations are predicated on the assumption that
the patient is honest, neither exaggerating symptoms nor consciously attempting
to deceive doctors and lawyers. That is generally true, but sadly, not always
so. It is important to remember that the patient (claimant) develops the
primary gain, while secondary gain depends on others and is received by that
individual.
Tertiary gain occurs when others stand to gain from the perpetuation of the patient’s symptoms. Typical examples include family members who hope to gain in social esteem, support or financially from the patient’s illness. Tertiary gain may be afforded by fees to a physiotherapist, psychologist [33] or to physicians for their attempts at therapy. Rehabilitation experts tend to offer measures that prolong therapy and dependancy. Physicians, psychologists, and, some lawyers may hope to recruit more practice or esteem. In a scathing attack on psychology, Parker, himself a psychologist, has accused his peers of
“producing ‘banal ideas’ wrapped in needlessly mystifying language aimed at making themselves appear more scientific than they are.… Mainstream psychology has a quite mistaken image of the way the natural sciences operate and it has built itself as a fake science.”[34]
Unfortunately, tertiary gain contributes to the development of disability syndromes. Although ultimately the patient holds the key to the purpose underlying the illness behaviour, since this is not a subconscious conversion reaction, then he is able to dispense with it if he chooses. It is misleading to retreat behind a screen of psychiatric labels without applying proper diagnostic criteria.
“Psychiatry is, among other things, the institutionalised denial of the tragic nature of life: individuals who want to reject the reality of free will and responsibility can medicalise life, and entrust its management to health professionals. [35]
Secondary gains and secondary losses will be attractive only when the gains outweigh the losses by adopting the sick role. Thus, the symptoms presented generally are given a more palatable organic sounding label such as chronic fatigue syndrome or traumatic fibromyalgia. Ferrari et al3 distinguish between the unconscious subconscious—“a deep and not readily brought to awareness, pre-conscious —just beneath our level of awareness and easily brought to awareness, and conscious —aware.”
They say that the pre-conscious and conscious are readily under
one’s control.
The sick role inevitably provides secondary gains. It is often related to the desire to control one’s environment; it can:
1. elicit care, sympathy, and concern from family and friends;
2. provide financial awards associated with disability.
3. use an apparently disabling illness as an explanation for one’s failures;
4. afford the means of avoiding work ;
5. restore status or domination in the family;
6. achieve revenge for bad treatment or bad pay by an employer or an insurance company ;
There are therefore, many types of secondary gains, not just monetary reward: we can understand why some patients continue with symptoms after financial compensation.
Somatisation
Somatisation is the chief mechanism, primarily because it transforms an unacceptable ‘psychological disorder’ into a socially acceptable organic disability. Somatisation is the expression of psychological distress as bodily symptoms. Common examples are a tension headache in response to stress, or palpitations accompanying anxiety. Somatisation is thus a part of daily life, but not necessarily evidence of psychological illness. Somatisation can occur[36] when the sick role appears attractive and allows a respectable state of disability.
Although florid malingering and insurance fraud exist, this explanation is not often capable of proof, and indeed is probably uncommon. Some degree of deliberate exaggeration, forgetting conveniently similar symptoms before the incident in question is however commonplace in claimants for compensation. False or “inappropriate” physical signs, grimacing and grunting during examination are also frequent accompaniments that are deliberately executed, not hysterical. They are plainly a conscious reaction to the examination, an attempt to present the doctor with a picture of illness as conceived by the claimant. Some subjects give the strong impression of a well-rehearsed and even tutored performance.
The Individual at Risk
One risk factor[37] is emotional disorder earlier in life, but
not necessarily causing protracted disability. Before someone seeks the sick
role, he must reach a state where he has grave difficulties in coping with a
life situation. He may remain like this until an illness or accident provides a
potential solution. This is why many appear to be coping with their life and
working full-time. When such an incident arises, it transforms distress into
the symptom picture of pain, fatigue, and disability. He then finds the
gatekeeper who will provide a label implying organic disease.
If some such people have had past traumata or illness but did not adopt the sick role it is usually because they have been unable to obtain an acceptable no fault diagnosis from a willing gatekeeper. Woods and Goldberg [38]discuss in this context: attribution, stigma, collusion between doctor and patient, and abnormal illness behaviour. They describe “special vulnerability factors in these patients’ personalities before the … illness”.
Conclusion
An invalid’s lifestyle, if adopted without adequate cause, is a grave misfortune for the patient and for its reflection on current social attitudes that foster such states.
Modern society unfortunately appears not only to accept the sick role, but many of its systems of support and rulings in court proceedings are actually conducive to illness behaviour. To some extent the portentous diagnostic labels given to these patients fosters rather than alleviates illness. What constitutes a diagnosis is a problem, which has confronted doctors since the time of Hippocrates. The issue is not just one of semantics, but has implications of importance for the scientifically correct understanding and naming of diseases. For “diagnoses are not diseases, but are ever changing representations of disease to permit convenient communication and to allow brief descriptive insights into their nature”.35,[39] It is probable that biological factors deriving from the primary event initiate the process. The patient’s free choice in the way he presents his symptoms, combined with the social reception they may achieve, determine the subsequent clinical features. Thus, in medical terms, the symptoms and disabilities are often discrepant with the initial illness or injury. The patients’ behaviour arises out of a desire to attain the sick role for the secondary gains. If society eliminated the stigma of psychological illness, as opposed to exaggeration and simulation, then such chronic disability with retreat into exaggerated or ‘assumed illness’ might disappear.
Sometimes an assumed illness starts as deliberate exaggeration but becomes an adopted way of life. The unfortunate patients may come to believe they are ill; symptoms then persist after settlement.
It is wrong to blame everything on society. This denies the free choice of the individual either to take the consequences of life as a dependant apparently disabled person, or to seek a positive way to cope with his problems. This is implied when we speak of terms such as "playing out the sick role,” and, a desire to attain the sick role for secondary gains”. There is always then a choice for the patient. They have the alternative, not to adopt the sick role.
Nevertheless, the pressures of society can be difficult to withstand for those not gifted with resilience. We should also recognise and try to eliminate the contribution made by doctors and health workers who mistakenly aid and abet a ‘culture’ that promotes this state of chronic disability
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Table 1 Possible explanation for discrepancy between incident and apparent disability 1. Unrecognised organic damage caused by incident 2. Pre-accident disease 3. Psychological illness: 4. Conscious exaggeration |
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Table 2 . Features which suggest exaggeration |
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1. When symptoms are discordant with the injury; |
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2. when restricted movements are discrepant with the demonstrated pathology |
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3. when there are ‘spurious’, or ‘inappropriate’ physical signs; |
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4. when analgesics, and many physical therapies fail to produce reasonable relief; |
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5. when physical activities (observed by witnesses or video observation) are variable and inconsistent with clinical signs and behaviour during an examination at about the same time after injury. |
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