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Clinical relevance of the sick role and secondary gain in the treatment of disability syndromes
Medical Hypotheses (2002) 59(2), 129–134 ª 2002 Elsevier Science Ltd. All rights reserved. doi: 10.1016/S0306-9877(02)00119-6, available online at http://www.idealibrary.com
Clinical relevance of the sick role and secondary gain in the treatment of disability syndromes Oliver Kwan, Jon Friel Edmonton, Alberta, Canada
Summary There are many controversial disability syndromes, representing medicolegal and social dilemmas for a variety of medical disciplines. Health care professionals are at a loss to cure these patients, and judges and disability review boards struggle to be fair while at the same time trying to understand the basis and appropriateness of the ever-growing claims of disability. Various models describe the illness behavior in these syndromes, and a recent model proposed that deals with the sick role, gain, and illness behavior in a social context is considered for its application to psychotherapy. One finds that despite the utility of such a model in describing the patient’s behavior, using this knowledge to alter the behavior remains a difficult challenge for the psychotherapist. ª 2002 Elsevier Science Ltd. All rights reserved.
INTRODUCTION In health care, one develops and explores models of a variety of illnesses, examining for example, the etiology, epidemiology, symptomatology, pathology, natural history and response to therapy in order to not only provide a greater ‘scientific’ understanding and organize further avenues for research, but also for the expressed purpose of helping those suffering with these illnesses. There are a variety of controversial disability syndromes that plague modern society, generate great suffering, cause a loss of one’s normal role in contributing to societal well-being, and greatly tax the health care system. These syndromes include chronic low back pain (especially after work injury), late (chronic) whiplash syndrome, fibromyalgia, chronic fatigue syndrome, myalgic encephalitis, chronic temporomandibular disorders, repetitive strain injury, multiple chemical sensitivities, sick
Received 24 July 2001 Accepted 1 November 2001 Correspondence to: Dr. Oliver Khan PhD (Psych), 207, 10708-97 Street, Edmonton, Alberta, Canada, T5H 2L8. Phone: 780-424-3960; Fax: 780-424-3964; E-mail: [email protected]
building syndrome, Gulf war syndrome, and silicon breast implant toxicity, among many others. While at first glance one might believe these to be very distinct syndromes etiologically, and that separate models of illness must apply, Ferrari and Kwan (1) have suggested that the apparent heterogeneity of these syndromes is somewhat muted by the recognition of fundamental personal, social and cultural events and factors that operate in rendering their characteristics. Such fundamental aspects that are often left out of current models or which are only appreciated on a superficial level include illness behavior, sick role, secondary gain, and considerations of the information processing that governs illness behavior (1–3). One may thus consider that a more in-depth appreciation of these concepts provides a framework upon which to understand instead the homogeneity of these disability syndromes, and perhaps via such an approach, provide a potentially more meaningful model with respect to clinical applications. Thus we will consider the clinical application (therapy) of a model built upon, at least in part, concepts of illness behavior, the sick role, gain, and the information processing that governs illness behavior. For those who find themselves requested to offer treatment to patients with disability syndromes, the following may be read as a cautionary note.
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A MODEL OF GAIN, THE SICK ROLE, AND DISABILITY All models are of course merely approximations, and certainly in dealing with these controversial disability syndromes, models often suffer from a lack of objective validation. Nevertheless, such models are meaningfully expressed to at least allow for further research avenues and shifting of clinical paradigms that may bring us in closer proximity to a solution. The model proposed by Ferrari et al. (1–3) is described in brief here.
Gain and the sick role Unlike primary gain, secondary gain is not created by the individual. The meaning of secondary gain has over time become largely a legal concept. It can be understood as arising out of a social construct – the sick role. Parsons (4) was among the first to examine the social construct of the sick role as a partially and conditionally legitimate state which an individual may be granted. Thus, society grants that an ill individual shall hold this special and distinct role. That role has specific features namely that the ‘ill person’ recognizes his obligation to cooperate with others for the purpose of ‘getting well’ as soon as possible. In addition, special rights and privileges are granted to the individual who becomes ill. They may be relieved from work and social obligations and other civic duties. To the extent that these are advantageous to the individual, they become secondary gains. It should be noted that these ‘advantages’ always exist in one’s environment and are awarded as part of the social contract (1). Hence, secondary gain is readily available to the individual fulfilling the criteria for the sick role. What are the criteria for the sick role? Because of the social stigmatization that exists towards most psychological illnesses, these considered as being ‘at fault’ For it is perceived to be stemming from one’s moral or character weaknesses in terms of its etiology or perpetuation. The sick role is most readily granted when the criteria of ‘nofault’ are met (1). It is implicit that a disease potentially influences one’s behavior largely beyond one’s control. If one has knee inflammation, one has knee pain. It is not under one’s control and not one’s fault. Society in general, many of the health care gatekeepers, and often patients themselves view psychological illness or disability as partially at least one’s fault: their weaknesses, or their moral fortitude are often called into question. When, as in most cases, one requires a no-fault entry into the sick role, the appearance of organic illness (a disease) is certainly one of the most readily available forms. It is for this reason that the debates rage over whether fibromyalgia, chronic fatigue syndrome, late
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whiplash syndrome, et cetera, are diseases versus nondiseases, organic versus non-organic. If society would as readily grant the sick role to a patient with psychological illness with no stigmatization, then fibromyalgia patients would not have to constantly fight to legitimize their illness as organic disease. They could be granted the same rights and privileges as anyone else granted the sick role. But society does not accept that. Society does not want to freely and readily grant the sick role to those with psychological illness, or at least without some undercurrent of stigmatization. No matter how much biochemical evidence there exists for depression (as an attempt to make it seem like a ‘real disease’), for example, depressed patients would prefer to tell their employer and their friends that they are unable to meet their obligations because of their arthritis, not because they are depressed. Why? Others do not blame an individual for their arthritis, fatigue, severe pain, et cetera, but they do often get blamed for their depression. Society simply does not readily accept depression as a disease, and the individual’s own behavior or lack of moral fortitude might be held as his fault if he claims depression. Even though one agrees that psychological suffering is genuine suffering, labeling illnesses like fibromyalgia as non-organic, psychological, et cetera has the immediate effect of delegitimizing them as a no-fault entry into the sick role. And this bias is evident in both physicians and insurance companies as well. Aaron et al. (5) showed that even with the exact same label, with same symptoms and the same severity of symptoms, when the origin of symptoms is considered to be emotional, disability is far less likely to be granted by the parties involved. So the sick role has this implicit requirement: present with something that appears to have a no-fault basis, usually looking like a disease (1). One is obligated to minimize reporting of psychological symptoms or disturbances and maximize the reporting of physical symptoms such as pain, fatigue, numbness, et cetera that are seen in many diseases. If the patients admits to psychological disturbance, it is attributed as secondary to the pain, just as a patient with rheumatoid arthritis can develop depression secondary to chronic pain. Society accepts that the pain in rheumatoid arthritis is something beyond one’s control, and so it is also beyond one’s control if depression follows. It is likely beyond one’s control in many other settings if depression occurs, but if a ‘disease’ is not there, society does not hold this view. Once one meets the requirements for the sick role, the sick role is granted. But note again, as mentioned earlier, that the sick role is a social contract as well, for there is the proviso that the sick role is granted so long ª 2002 Elsevier Science Ltd. All rights reserved.
Clinical relevance of the sick role and secondary gain 131
as one recognizes the obligation to cooperate with others for the purpose of ‘getting well’ as soon as possible. Thus, the individual must be fully motivated to become well. Once the individual shows any motivations not to get well, then the contract is breeched, and society finds this unacceptable. The sick role is now being adopted as compared to being granted. In its most extreme form, society labels the lack of motivation to get well (or motivation to remain ill) as malingering. In malingering, one consciously plots and carries out one’s conscious motivations, and is obviously in control of doing so. Is there another way to carry out one’s motivations to maintain the sick role? There may be other ways indeed, and yet it seems odd that anyone would wish to be genuinely ill. It is understandable why the malingerer chooses to appear ill, because really they do not lose or suffer as a result of doing so. The economy of secondary gain The general view of most people is that being ill is not desirable, and although there are gains to being ill (in this instance, secondary gains), there clearly are losses. But why would anyone pursue secondary gain in the first place if the illness also brings losses? What is the net gain if illness brings losses? Illness brings the greatest losses to individuals not otherwise distressed or not already suffering in other ways. What if an individual is otherwise distressed, overburdened, and suffering in some way, but in a way that gives them no option for a socially acceptable reprieve without losing honor, without maintaining their apparent hard-work ethics, and without being blamed if they fail? What if the losses that most people experience such as loss of income, loss of enjoyment of family life, loss of opportunity and hope of achieving one’s goals are already evidenced or relatively unimportant before the illness. What if one’s circumstances become so intolerable that abandoning them all might be a viable alternative for psychological survival? Does the illness really bring so much additional loss that it is inconceivable to adopt the sick role? Perhaps not, and besides it brings all the secondary gains. Perhaps it is this balance that determines, if not predisposes to, adoption of the sick role. Most people find the balance is too heavily weighed by losses: for some the balance is more heavily weighed by gains. Some individuals who are suffering psychologically or socially before they are known to be sick may hide their symptoms, perhaps even at times from themselves. They may have suffered many stressors, many miseries, many disappointments, and yet have to continue to cope with these losses and burdens, because society will not grant them any freedom to do otherwise (you need the sick role for freedom from burdens). They are forced to sol-
ª 2002 Elsevier Science Ltd. All rights reserved.
dier on with their miserable lives. Why suffer with all those things and not be given the sick role when one can suffer with all those things (just change the presentation of symptoms from that of apparently psychological [the mind] origin to that apparently of disease [the body] origin) and get the sick role? Pursuit of secondary gain The steps to achieving secondary gain are: 1. Sick role is granted according to certain criteria. Those criteria are well known and are presumably over-learned in our society; 2. The secondary gains are available to those with the sick role, and are also presumably over-learned; 3. The sick role is available to those with no-fault entry (a no-fault illness); 4. The no-fault entry is thus available to those presenting with specified types of symptoms and syndromes; 5. One presents with those symptoms which may lead to a no-fault diagnosis (and minimize any symptom that might lead to an at-fault diagnosis). 6. Maintain that presentation. Ferrari et al. (2) have indicated that from the dynamics of a model of consciousness states, one appreciates that this sequence and behavior is possible under circumstances not indicative of malingering or deliberate action per se, and yet still represents a choice in terms of one’s illness behavior. CLINICAL APPLICATIONS IN PSYCHOTHERAPY The question is: If one accepts that some aspect of the patient’s behavior can be appreciated by an understanding of the above processes and concepts, is there a clinical application to this understanding? Effective therapy is the ultimate goal of exploring any model of an illness. Models of these disability syndromes have previously examined classical conditioning, operant conditioning, psychoanalysis, attribution, cognitive errors, masked depression, emotional disturbance secondary to injury, etc. These models have lent themselves to clinical applications in the design of therapeutic approaches with some measure of success. Yet, it is clear that these have failed to lead to substantive meaningful therapeutic outcomes from a societal perspective–the disability syndromes remain epidemic and costly. This does not suggest these models are wrong, but that they may be incomplete. Is it helpful to in addition utilize concepts of the sick role, illness behavior, secondary gain, and an appreciation of the thought processing underlying illness behavior in the therapeutic approach?
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Clinical applications – viable? Examining the key components of this model, one realizes that in all but a few cases could a psychologist be successful in therapy. The reasons for this are many. Our first consideration is of the enabling gatekeeper. The gatekeeper in context is a person who can grant the sick role. The gatekeeper is one who is selected by society, on account of his education, knowledge and ethics, to mind the gate to special rights and privileges of the no-fault infirmed (6). The most active enabling gatekeepers are physicians, and most of these patients meet many physicians over months to years before there is ever a consideration of involvement of a psychologist. Thus, the patient has been entrenched in their sick role behavior for months or years before they see a psychologist. They may see a psychologist earlier than this, but it is usually at the threat of an ‘independent’ examination at the request of a third party, in which case the patient views the psychologist’s advice as skeptical, and is likely to reject any such treatment advice. The patient merely associates the psychologist as being a member of the group that would rob him of the sick role. The patient will very likely at this stage seek advice from patient support groups and a lawyer, and thus be very adversarial with any further notions of psychotherapy. He will also report the events to his enabling gatekeepers, who, because they wish to remain patient advocates or are fearful of their own loss of tertiary gain opportunities, will make every attempt to create the impression that they are not surprised an ‘insurance psychologist’ would behave that way and perhaps may negate otherwise helpful suggestions. Remember that the sick role is so valuable to these individuals that they are prepared to suffer and endure losses in order to maintain it. They made up their minds to do so some time ago, and have sufficient conviction to maintain the sick role for decades. It is very difficult for the treating psychologist to establish any rapport under these circumstances, particularly when enabling gatekeepers, lawyers, patient support groups, and patient’s fears are driving an adversarial atmosphere. Thus, the delay in engaging a psychologist often creates a poor environment for their involvement. Ideally, if there were no governing body for physicians, some physicians might actually, at a very early stage, explain sympathetically to the patient that maybe, just maybe, they have a psychological problem, and need help. They could explain that they are prepared to write to the insurer and let them know that the patient needs 6 months of psychotherapy. In the current climate of governing bodies, however, it is the view of most physicians that even the most gentle mention of the word ‘psychological’ generates a complaint to the gov-
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erning body, and physicians refuse to repeat that mistake. Although it is certainly true that some patients will accept the physician’s diagnosis and willingly participate in psychotherapy, it only takes one patient to make a complaint and that physician will never repeat his behavior again (7). If the enabling gatekeeper behavior cannot be eliminated, can the effects of that behavior be undone? This brings us to the second consideration for this model in clinical practice. If the psychologist has a good rapport (which may be difficult when the insurance company has forced the patient to psychotherapy or else have their benefits cut off), they may actually be able to give the patient reason to reject the advice of the enabling gatekeeper–maybe. On the other hand, if just one patient decides not to reject that advice, and with the knowledge that they are forced by their insurance company to see this psychologist, they can use this as an opportunity to strike back at their insurance company by reporting, albeit for frivolous reasons, the psychologist to their enabling gatekeepers and to the governing body. The enabling gatekeepers would express doubt relative to the psychologist’s knowledge in medicine, and will fully support the patient’s complaint to the psychologist’s governing body. The governing body will of course be appalled by the psychologist’s audacity to challenge the many learned physicians in the community, and they will make sure the psychologist (who by the way is only getting his regular fees to put his career on the line like this) does not repeat his error. And so, while the enabling gatekeeper is an important aspect of the model, there may be no clinical application to this understanding in the psychologist’s therapeutic scheme; not for the reason of lack of sound theoretical foundation, but for political incorrectness, and not without the possibility of ruining many a bright career. What about the economy of secondary gain? There lies a third consideration in the application of this model in clinical practice. If, and only if, there is sufficient rapport established, can the psychologist even venture into this topic. There are two approaches. First, the psychologist can assist the patient to achieve some insight into the guilt or dishonor stemming from not having obliging their contract (in accepting the sick role) to get better as soon as possible, or for feeling entitled to benefits which are unwarranted. Most patients will be insulted by this (after all, any North American knows that taking full advantage of the system is their right) and with the ensuing complaint to the governing body, following which the governing body reaffirms the patient’s right to remain sick and seek disability until he feels he is completely well, the psychologist will no ª 2002 Elsevier Science Ltd. All rights reserved.
Clinical relevance of the sick role and secondary gain 133
longer be in practice. Psychologists are taught to believe that every patient is willed to positive change, but this assumption in itself does not make the patient change his behavior, but rather it merely guarantees an immediate discrepancy between the psychologist’s perception of what the patient should be doing, and what the patient has decided he should be doing. Alternatively, the psychologist could show the patient the many losses he is experiencing and making his family suffer. Yet, the fact is that the patient might have been examining, experiencing, and weighing his losses for months or years, and may have been doing so even before he became ill. Despite all the guilt that the patient has insight upon, he has made the choice to accept those losses. There is something weighing his decision to do so. It is unlikely that the psychologist would be able to identify any losses the patient has not already experienced, or to make him feel guilty about those losses. The patient has already experienced the guilt, and has continued to make the choice to adopt the sick role. Adopting the sick role means suffering losses, but carrying on in the sick role because one has decided the gains are more valuable. Recall that adoption of the sick role, even though it may not be malingering, is a very personal and self-indulging decision. One does not adopt the sick role for someone else’s sake, but for one’s own sake, and the sake of others is thus often irrelevant. The patient does not get better until his own personal economy of secondary gain shifts dramatically, and then the patient has a self-indulged reason to get better because his analysis of the economy suggests it is to his psychological advantage to do so. Therapy is not required in these individuals, just fate to bring an event or person into their lives that shifts the economy of gain. The psychologist is not capable of achieving what fate achieves (8): The blackest ink of fate was sure my lot, And when fate writ my name, it made a blot. Our fourth consideration concerns with the argument that some patients have a variable ‘attachment’ to the sick role, and one may be able to ‘encourage’ some to let go of the sick role. Yet, if there is a variable desire to hold onto the sick role, it is only if and when they have a variable economy of gain. There might be periods of time when the individual experiences some new losses that he never previously experienced, and he begins to think maybe he should give up this sick role. He is beginning to get less ‘attached’ to it, but only because his economy of gain has become less advantageous. If an event then occurs that creates a new and substantial gain, the economy of gain will shift again, and he will have no doubt that it is worthwhile to maintain the sick role once again. ª 2002 Elsevier Science Ltd. All rights reserved.
Adoption of the sick role either occurs or ceases according to the economy of gain. When the economy of gain is heavily weighed by gains, the sick role is adopted. When it is heavily weighed by losses, then the sick role is not adopted. Given that adoption of the sick role is such an extreme change in one’s life, such a severe variance in behavior from normal, and such a severe burden on other family members, for example, that people do not adopt the sick role when the gains outweigh the losses by, say, 51% to 49%. It is plausible that at varying times, many of the general population are near the 50% mark, but since we know only a small percentage of the population do adopt the sick role, who are they? They are likely the ones who have a balance of gains to losses that are more extreme in their ratio, like 75% to 25%. Thus, one cannot ‘mildly’ adopt the sick role. One either does or does not, and one is likely to wait until a certain threshold of gains versus losses has been met. The threshold may vary, but the balance of gains and losses will still have an extreme value (90–10, 80–20, 75–25, 85–15, etc.). The variance of this group does not overcome the many standard deviations they are from normal. Getting the patient with a 75–25 balance back to normal is not necessarily any easier than getting them back when they have a 90–10 balance. In each case, there are miles to travel. One suggests, most who adopt the sick role have an extreme imbalance of gains versus losses. How does one then account for apparent success with various forms of therapies in some patients, while those same therapies fail in many others? Our model would suggest that what appears as ‘successful’ therapy may actually be a reflection that the patient’s economy of gain shifted recently or gradually. The patient simply presents the picture of a response to therapy, lacking insight (or denying insight) into the change in their life that truly generated their abandonment of the sick role– it had little to do with therapy.
CONCLUSION It seems clear that there are very important medicolegal applications to this model. In the current social environment, however, there seem few viable therapeutic applications of this model. Indeed, Ferrari and Kwan have previously commented (1): The fact is that these disability syndromes are ultimately the product of societal behavior. When one examines the risk factors for somatization, one sees that these risk factors largely reflect many societal problems such as alcoholism, drug addiction, violence, erosion of the family unit, desires for material gain, selfishness, and greed. Our solution
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to these disability syndromes lies in recognizing the contribution each of us makes to a society that promotes this degeneration. The problem boils down to much more than the exact organization of the compensation system, or to knowing when the ‘critical period’ for therapy is. The problem is one that exists because of societal degeneration, and can only be fixed by societal regeneration. Degenerative social behaviors of greed, evil, and other animalistic passions produce many of the social problems experienced in the histories of these patients. Societal degeneration also encompasses the ill-structured behavior of the medical community, who suffer from these same animal passions, but more specifically ensure that the general public should pre-conceive that mental illness takes you nowhere, and physical illness fulfills your goals. Shorter (9) blames the medical community for initiating this by both becoming obsessed with the Cartesian dichotomy in the 17th century, on the one hand, and ensuring the thriving of asylums on the other when their dichotomy failed. Psychologists (they were actually psychiatrists and neurologists then) lost the opportunity to repair this dichotomous rift at the turn of the 20th century, when they had brief promise with ‘neurosis’ as a disorder of ‘function of the nervous system’, suggesting both mental and physical events could be entwined, rather than simply ‘madness’–a non-bodily disease. That period of promise could have continued along the exploration of a multidimensional approach to illness, but instead there was Freud. Psychiatrists and psychologists have never really been taken seriously since by the medical community, except as a reaffirmation of the rift between ‘medicine of the body’ and ‘medicine of the mind’. Psychologists have since spent decades manufacturing victims and have ensured a general disdain for them among the general public, the medical community, and the insurance systems paying for this victimization (10). So the medical community in its historical pattern now precludes the urgent consideration by the patient and physicians that their symptoms might not be due to a bodily disease. Physicians are true somatizers. Just like patients, when pain occurs, a physician makes a long list of organic causes first, and may not even wish to consider psychologicial factors at all, or at the best at the very end of the list. They are trained to ‘rule out organic first’, then seek ‘non-organic’ rather than assessing the whole individual immediately. The result is that a physician will not let a psychologist near a patient for a long time, and the insurers, having been routinely robbed by psychologists manufacturing victims, are loathe to in-
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clude psychologists at any stage other than detection of malingering (10). It is thus irrelevant that there is a ‘critical period’ for therapy. A million studies could define that critical period, and still we would not advance a treatment strategy. This is the paradox, The Ferrari–Kwan–Friel paradox, if you will. Our model of these patients is based on the factors that simultaneously preclude clinical application of the model. We understand the behavior of the patient, but cannot intervene with that knowledge. The more we know about what causes these patients to behave as they do, the more we see the obstacles to application of that knowledge. We exist in a society where we (the health care community) are unable to access this critical period, because of the motivations of the patient, of the medical community, and of ‘victim-manufacturing’ psychologists. That is the crux: Few are motivated, or even if motivated, allowed to access that critical period for fear of loss of one’s goals (the patient), incrimination by others and/or loss of one heirachial/dichotomous status in health care (physicians), and the current reputation of psychologists. This should not be a discouraging revelation. It is a fact that the legal realm is not the same as the clinical realm, and one should not expect models to readily be applicable in each. The model is still very useful, very much so as a descriptor of the illness mechanism, and in assisting the trier of facts in the legal realm. It thus still may serve a valuable societal purpose. REFERENCES 1. Ferrari R., Kwan O. The no-fault flavor of disability syndromes. Med Hypotheses 2001; 56: 77–84. 2. Ferrari R., Kwan O., Friel J. Cognitive theory and illness behavior in disability syndromes. Med Hypotheses 2001; 57: 112–114. 3. Kwan O, Ferrari R, Friel J. Tertiary gain and disability syndromes. Med Hypotheses 2001; 57: 459–464. 4. Parsons T. Social structure and personality. London: CollierMacMillan; 1964. 5. Ferrari R., Kwan O. Fibromyalgia and physical and emotional trauma:how are they related? Comment on the article by Aaron et al. Arthritis Rheum 1998; 42: 828–830. 6. Getz L. Clinical concepts and dilemmas between disease and aversive life events. Scand Work Environ Health 1997; 23(suppl. 3): 91–96. 7. Aronoff G. M. Chronic pain and the disability epidemic. Clin J Pain 1991; 7: 330–338. 8. The writings of Henry fielding. Amelia. Book II, chapter IX. London: William P. Nimmo 1878:523. 9. Shorter E. From paralysis to fatigue. New York: Maxwell Macmillan; 1992. 10. Dineen T. Manufacturing victims: What the psychology industry is doing to people. Robert Davies Publishers; 1996.
ª 2002 Elsevier Science Ltd. All rights reserved.
Clinical relevance of the sick role and secondary gain in the treatment of disability syndromes Oliver Kwan, Jon Friel Edmonton, Alberta, Canada
Summary There are many controversial disability syndromes, representing medicolegal and social dilemmas for a variety of medical disciplines. Health care professionals are at a loss to cure these patients, and judges and disability review boards struggle to be fair while at the same time trying to understand the basis and appropriateness of the ever-growing claims of disability. Various models describe the illness behavior in these syndromes, and a recent model proposed that deals with the sick role, gain, and illness behavior in a social context is considered for its application to psychotherapy. One finds that despite the utility of such a model in describing the patient’s behavior, using this knowledge to alter the behavior remains a difficult challenge for the psychotherapist. ª 2002 Elsevier Science Ltd. All rights reserved.
INTRODUCTION In health care, one develops and explores models of a variety of illnesses, examining for example, the etiology, epidemiology, symptomatology, pathology, natural history and response to therapy in order to not only provide a greater ‘scientific’ understanding and organize further avenues for research, but also for the expressed purpose of helping those suffering with these illnesses. There are a variety of controversial disability syndromes that plague modern society, generate great suffering, cause a loss of one’s normal role in contributing to societal well-being, and greatly tax the health care system. These syndromes include chronic low back pain (especially after work injury), late (chronic) whiplash syndrome, fibromyalgia, chronic fatigue syndrome, myalgic encephalitis, chronic temporomandibular disorders, repetitive strain injury, multiple chemical sensitivities, sick
Received 24 July 2001 Accepted 1 November 2001 Correspondence to: Dr. Oliver Khan PhD (Psych), 207, 10708-97 Street, Edmonton, Alberta, Canada, T5H 2L8. Phone: 780-424-3960; Fax: 780-424-3964; E-mail: [email protected]
building syndrome, Gulf war syndrome, and silicon breast implant toxicity, among many others. While at first glance one might believe these to be very distinct syndromes etiologically, and that separate models of illness must apply, Ferrari and Kwan (1) have suggested that the apparent heterogeneity of these syndromes is somewhat muted by the recognition of fundamental personal, social and cultural events and factors that operate in rendering their characteristics. Such fundamental aspects that are often left out of current models or which are only appreciated on a superficial level include illness behavior, sick role, secondary gain, and considerations of the information processing that governs illness behavior (1–3). One may thus consider that a more in-depth appreciation of these concepts provides a framework upon which to understand instead the homogeneity of these disability syndromes, and perhaps via such an approach, provide a potentially more meaningful model with respect to clinical applications. Thus we will consider the clinical application (therapy) of a model built upon, at least in part, concepts of illness behavior, the sick role, gain, and the information processing that governs illness behavior. For those who find themselves requested to offer treatment to patients with disability syndromes, the following may be read as a cautionary note.
129
130 Kwan and Friel
A MODEL OF GAIN, THE SICK ROLE, AND DISABILITY All models are of course merely approximations, and certainly in dealing with these controversial disability syndromes, models often suffer from a lack of objective validation. Nevertheless, such models are meaningfully expressed to at least allow for further research avenues and shifting of clinical paradigms that may bring us in closer proximity to a solution. The model proposed by Ferrari et al. (1–3) is described in brief here.
Gain and the sick role Unlike primary gain, secondary gain is not created by the individual. The meaning of secondary gain has over time become largely a legal concept. It can be understood as arising out of a social construct – the sick role. Parsons (4) was among the first to examine the social construct of the sick role as a partially and conditionally legitimate state which an individual may be granted. Thus, society grants that an ill individual shall hold this special and distinct role. That role has specific features namely that the ‘ill person’ recognizes his obligation to cooperate with others for the purpose of ‘getting well’ as soon as possible. In addition, special rights and privileges are granted to the individual who becomes ill. They may be relieved from work and social obligations and other civic duties. To the extent that these are advantageous to the individual, they become secondary gains. It should be noted that these ‘advantages’ always exist in one’s environment and are awarded as part of the social contract (1). Hence, secondary gain is readily available to the individual fulfilling the criteria for the sick role. What are the criteria for the sick role? Because of the social stigmatization that exists towards most psychological illnesses, these considered as being ‘at fault’ For it is perceived to be stemming from one’s moral or character weaknesses in terms of its etiology or perpetuation. The sick role is most readily granted when the criteria of ‘nofault’ are met (1). It is implicit that a disease potentially influences one’s behavior largely beyond one’s control. If one has knee inflammation, one has knee pain. It is not under one’s control and not one’s fault. Society in general, many of the health care gatekeepers, and often patients themselves view psychological illness or disability as partially at least one’s fault: their weaknesses, or their moral fortitude are often called into question. When, as in most cases, one requires a no-fault entry into the sick role, the appearance of organic illness (a disease) is certainly one of the most readily available forms. It is for this reason that the debates rage over whether fibromyalgia, chronic fatigue syndrome, late
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whiplash syndrome, et cetera, are diseases versus nondiseases, organic versus non-organic. If society would as readily grant the sick role to a patient with psychological illness with no stigmatization, then fibromyalgia patients would not have to constantly fight to legitimize their illness as organic disease. They could be granted the same rights and privileges as anyone else granted the sick role. But society does not accept that. Society does not want to freely and readily grant the sick role to those with psychological illness, or at least without some undercurrent of stigmatization. No matter how much biochemical evidence there exists for depression (as an attempt to make it seem like a ‘real disease’), for example, depressed patients would prefer to tell their employer and their friends that they are unable to meet their obligations because of their arthritis, not because they are depressed. Why? Others do not blame an individual for their arthritis, fatigue, severe pain, et cetera, but they do often get blamed for their depression. Society simply does not readily accept depression as a disease, and the individual’s own behavior or lack of moral fortitude might be held as his fault if he claims depression. Even though one agrees that psychological suffering is genuine suffering, labeling illnesses like fibromyalgia as non-organic, psychological, et cetera has the immediate effect of delegitimizing them as a no-fault entry into the sick role. And this bias is evident in both physicians and insurance companies as well. Aaron et al. (5) showed that even with the exact same label, with same symptoms and the same severity of symptoms, when the origin of symptoms is considered to be emotional, disability is far less likely to be granted by the parties involved. So the sick role has this implicit requirement: present with something that appears to have a no-fault basis, usually looking like a disease (1). One is obligated to minimize reporting of psychological symptoms or disturbances and maximize the reporting of physical symptoms such as pain, fatigue, numbness, et cetera that are seen in many diseases. If the patients admits to psychological disturbance, it is attributed as secondary to the pain, just as a patient with rheumatoid arthritis can develop depression secondary to chronic pain. Society accepts that the pain in rheumatoid arthritis is something beyond one’s control, and so it is also beyond one’s control if depression follows. It is likely beyond one’s control in many other settings if depression occurs, but if a ‘disease’ is not there, society does not hold this view. Once one meets the requirements for the sick role, the sick role is granted. But note again, as mentioned earlier, that the sick role is a social contract as well, for there is the proviso that the sick role is granted so long ª 2002 Elsevier Science Ltd. All rights reserved.
Clinical relevance of the sick role and secondary gain 131
as one recognizes the obligation to cooperate with others for the purpose of ‘getting well’ as soon as possible. Thus, the individual must be fully motivated to become well. Once the individual shows any motivations not to get well, then the contract is breeched, and society finds this unacceptable. The sick role is now being adopted as compared to being granted. In its most extreme form, society labels the lack of motivation to get well (or motivation to remain ill) as malingering. In malingering, one consciously plots and carries out one’s conscious motivations, and is obviously in control of doing so. Is there another way to carry out one’s motivations to maintain the sick role? There may be other ways indeed, and yet it seems odd that anyone would wish to be genuinely ill. It is understandable why the malingerer chooses to appear ill, because really they do not lose or suffer as a result of doing so. The economy of secondary gain The general view of most people is that being ill is not desirable, and although there are gains to being ill (in this instance, secondary gains), there clearly are losses. But why would anyone pursue secondary gain in the first place if the illness also brings losses? What is the net gain if illness brings losses? Illness brings the greatest losses to individuals not otherwise distressed or not already suffering in other ways. What if an individual is otherwise distressed, overburdened, and suffering in some way, but in a way that gives them no option for a socially acceptable reprieve without losing honor, without maintaining their apparent hard-work ethics, and without being blamed if they fail? What if the losses that most people experience such as loss of income, loss of enjoyment of family life, loss of opportunity and hope of achieving one’s goals are already evidenced or relatively unimportant before the illness. What if one’s circumstances become so intolerable that abandoning them all might be a viable alternative for psychological survival? Does the illness really bring so much additional loss that it is inconceivable to adopt the sick role? Perhaps not, and besides it brings all the secondary gains. Perhaps it is this balance that determines, if not predisposes to, adoption of the sick role. Most people find the balance is too heavily weighed by losses: for some the balance is more heavily weighed by gains. Some individuals who are suffering psychologically or socially before they are known to be sick may hide their symptoms, perhaps even at times from themselves. They may have suffered many stressors, many miseries, many disappointments, and yet have to continue to cope with these losses and burdens, because society will not grant them any freedom to do otherwise (you need the sick role for freedom from burdens). They are forced to sol-
ª 2002 Elsevier Science Ltd. All rights reserved.
dier on with their miserable lives. Why suffer with all those things and not be given the sick role when one can suffer with all those things (just change the presentation of symptoms from that of apparently psychological [the mind] origin to that apparently of disease [the body] origin) and get the sick role? Pursuit of secondary gain The steps to achieving secondary gain are: 1. Sick role is granted according to certain criteria. Those criteria are well known and are presumably over-learned in our society; 2. The secondary gains are available to those with the sick role, and are also presumably over-learned; 3. The sick role is available to those with no-fault entry (a no-fault illness); 4. The no-fault entry is thus available to those presenting with specified types of symptoms and syndromes; 5. One presents with those symptoms which may lead to a no-fault diagnosis (and minimize any symptom that might lead to an at-fault diagnosis). 6. Maintain that presentation. Ferrari et al. (2) have indicated that from the dynamics of a model of consciousness states, one appreciates that this sequence and behavior is possible under circumstances not indicative of malingering or deliberate action per se, and yet still represents a choice in terms of one’s illness behavior. CLINICAL APPLICATIONS IN PSYCHOTHERAPY The question is: If one accepts that some aspect of the patient’s behavior can be appreciated by an understanding of the above processes and concepts, is there a clinical application to this understanding? Effective therapy is the ultimate goal of exploring any model of an illness. Models of these disability syndromes have previously examined classical conditioning, operant conditioning, psychoanalysis, attribution, cognitive errors, masked depression, emotional disturbance secondary to injury, etc. These models have lent themselves to clinical applications in the design of therapeutic approaches with some measure of success. Yet, it is clear that these have failed to lead to substantive meaningful therapeutic outcomes from a societal perspective–the disability syndromes remain epidemic and costly. This does not suggest these models are wrong, but that they may be incomplete. Is it helpful to in addition utilize concepts of the sick role, illness behavior, secondary gain, and an appreciation of the thought processing underlying illness behavior in the therapeutic approach?
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Clinical applications – viable? Examining the key components of this model, one realizes that in all but a few cases could a psychologist be successful in therapy. The reasons for this are many. Our first consideration is of the enabling gatekeeper. The gatekeeper in context is a person who can grant the sick role. The gatekeeper is one who is selected by society, on account of his education, knowledge and ethics, to mind the gate to special rights and privileges of the no-fault infirmed (6). The most active enabling gatekeepers are physicians, and most of these patients meet many physicians over months to years before there is ever a consideration of involvement of a psychologist. Thus, the patient has been entrenched in their sick role behavior for months or years before they see a psychologist. They may see a psychologist earlier than this, but it is usually at the threat of an ‘independent’ examination at the request of a third party, in which case the patient views the psychologist’s advice as skeptical, and is likely to reject any such treatment advice. The patient merely associates the psychologist as being a member of the group that would rob him of the sick role. The patient will very likely at this stage seek advice from patient support groups and a lawyer, and thus be very adversarial with any further notions of psychotherapy. He will also report the events to his enabling gatekeepers, who, because they wish to remain patient advocates or are fearful of their own loss of tertiary gain opportunities, will make every attempt to create the impression that they are not surprised an ‘insurance psychologist’ would behave that way and perhaps may negate otherwise helpful suggestions. Remember that the sick role is so valuable to these individuals that they are prepared to suffer and endure losses in order to maintain it. They made up their minds to do so some time ago, and have sufficient conviction to maintain the sick role for decades. It is very difficult for the treating psychologist to establish any rapport under these circumstances, particularly when enabling gatekeepers, lawyers, patient support groups, and patient’s fears are driving an adversarial atmosphere. Thus, the delay in engaging a psychologist often creates a poor environment for their involvement. Ideally, if there were no governing body for physicians, some physicians might actually, at a very early stage, explain sympathetically to the patient that maybe, just maybe, they have a psychological problem, and need help. They could explain that they are prepared to write to the insurer and let them know that the patient needs 6 months of psychotherapy. In the current climate of governing bodies, however, it is the view of most physicians that even the most gentle mention of the word ‘psychological’ generates a complaint to the gov-
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erning body, and physicians refuse to repeat that mistake. Although it is certainly true that some patients will accept the physician’s diagnosis and willingly participate in psychotherapy, it only takes one patient to make a complaint and that physician will never repeat his behavior again (7). If the enabling gatekeeper behavior cannot be eliminated, can the effects of that behavior be undone? This brings us to the second consideration for this model in clinical practice. If the psychologist has a good rapport (which may be difficult when the insurance company has forced the patient to psychotherapy or else have their benefits cut off), they may actually be able to give the patient reason to reject the advice of the enabling gatekeeper–maybe. On the other hand, if just one patient decides not to reject that advice, and with the knowledge that they are forced by their insurance company to see this psychologist, they can use this as an opportunity to strike back at their insurance company by reporting, albeit for frivolous reasons, the psychologist to their enabling gatekeepers and to the governing body. The enabling gatekeepers would express doubt relative to the psychologist’s knowledge in medicine, and will fully support the patient’s complaint to the psychologist’s governing body. The governing body will of course be appalled by the psychologist’s audacity to challenge the many learned physicians in the community, and they will make sure the psychologist (who by the way is only getting his regular fees to put his career on the line like this) does not repeat his error. And so, while the enabling gatekeeper is an important aspect of the model, there may be no clinical application to this understanding in the psychologist’s therapeutic scheme; not for the reason of lack of sound theoretical foundation, but for political incorrectness, and not without the possibility of ruining many a bright career. What about the economy of secondary gain? There lies a third consideration in the application of this model in clinical practice. If, and only if, there is sufficient rapport established, can the psychologist even venture into this topic. There are two approaches. First, the psychologist can assist the patient to achieve some insight into the guilt or dishonor stemming from not having obliging their contract (in accepting the sick role) to get better as soon as possible, or for feeling entitled to benefits which are unwarranted. Most patients will be insulted by this (after all, any North American knows that taking full advantage of the system is their right) and with the ensuing complaint to the governing body, following which the governing body reaffirms the patient’s right to remain sick and seek disability until he feels he is completely well, the psychologist will no ª 2002 Elsevier Science Ltd. All rights reserved.
Clinical relevance of the sick role and secondary gain 133
longer be in practice. Psychologists are taught to believe that every patient is willed to positive change, but this assumption in itself does not make the patient change his behavior, but rather it merely guarantees an immediate discrepancy between the psychologist’s perception of what the patient should be doing, and what the patient has decided he should be doing. Alternatively, the psychologist could show the patient the many losses he is experiencing and making his family suffer. Yet, the fact is that the patient might have been examining, experiencing, and weighing his losses for months or years, and may have been doing so even before he became ill. Despite all the guilt that the patient has insight upon, he has made the choice to accept those losses. There is something weighing his decision to do so. It is unlikely that the psychologist would be able to identify any losses the patient has not already experienced, or to make him feel guilty about those losses. The patient has already experienced the guilt, and has continued to make the choice to adopt the sick role. Adopting the sick role means suffering losses, but carrying on in the sick role because one has decided the gains are more valuable. Recall that adoption of the sick role, even though it may not be malingering, is a very personal and self-indulging decision. One does not adopt the sick role for someone else’s sake, but for one’s own sake, and the sake of others is thus often irrelevant. The patient does not get better until his own personal economy of secondary gain shifts dramatically, and then the patient has a self-indulged reason to get better because his analysis of the economy suggests it is to his psychological advantage to do so. Therapy is not required in these individuals, just fate to bring an event or person into their lives that shifts the economy of gain. The psychologist is not capable of achieving what fate achieves (8): The blackest ink of fate was sure my lot, And when fate writ my name, it made a blot. Our fourth consideration concerns with the argument that some patients have a variable ‘attachment’ to the sick role, and one may be able to ‘encourage’ some to let go of the sick role. Yet, if there is a variable desire to hold onto the sick role, it is only if and when they have a variable economy of gain. There might be periods of time when the individual experiences some new losses that he never previously experienced, and he begins to think maybe he should give up this sick role. He is beginning to get less ‘attached’ to it, but only because his economy of gain has become less advantageous. If an event then occurs that creates a new and substantial gain, the economy of gain will shift again, and he will have no doubt that it is worthwhile to maintain the sick role once again. ª 2002 Elsevier Science Ltd. All rights reserved.
Adoption of the sick role either occurs or ceases according to the economy of gain. When the economy of gain is heavily weighed by gains, the sick role is adopted. When it is heavily weighed by losses, then the sick role is not adopted. Given that adoption of the sick role is such an extreme change in one’s life, such a severe variance in behavior from normal, and such a severe burden on other family members, for example, that people do not adopt the sick role when the gains outweigh the losses by, say, 51% to 49%. It is plausible that at varying times, many of the general population are near the 50% mark, but since we know only a small percentage of the population do adopt the sick role, who are they? They are likely the ones who have a balance of gains to losses that are more extreme in their ratio, like 75% to 25%. Thus, one cannot ‘mildly’ adopt the sick role. One either does or does not, and one is likely to wait until a certain threshold of gains versus losses has been met. The threshold may vary, but the balance of gains and losses will still have an extreme value (90–10, 80–20, 75–25, 85–15, etc.). The variance of this group does not overcome the many standard deviations they are from normal. Getting the patient with a 75–25 balance back to normal is not necessarily any easier than getting them back when they have a 90–10 balance. In each case, there are miles to travel. One suggests, most who adopt the sick role have an extreme imbalance of gains versus losses. How does one then account for apparent success with various forms of therapies in some patients, while those same therapies fail in many others? Our model would suggest that what appears as ‘successful’ therapy may actually be a reflection that the patient’s economy of gain shifted recently or gradually. The patient simply presents the picture of a response to therapy, lacking insight (or denying insight) into the change in their life that truly generated their abandonment of the sick role– it had little to do with therapy.
CONCLUSION It seems clear that there are very important medicolegal applications to this model. In the current social environment, however, there seem few viable therapeutic applications of this model. Indeed, Ferrari and Kwan have previously commented (1): The fact is that these disability syndromes are ultimately the product of societal behavior. When one examines the risk factors for somatization, one sees that these risk factors largely reflect many societal problems such as alcoholism, drug addiction, violence, erosion of the family unit, desires for material gain, selfishness, and greed. Our solution
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to these disability syndromes lies in recognizing the contribution each of us makes to a society that promotes this degeneration. The problem boils down to much more than the exact organization of the compensation system, or to knowing when the ‘critical period’ for therapy is. The problem is one that exists because of societal degeneration, and can only be fixed by societal regeneration. Degenerative social behaviors of greed, evil, and other animalistic passions produce many of the social problems experienced in the histories of these patients. Societal degeneration also encompasses the ill-structured behavior of the medical community, who suffer from these same animal passions, but more specifically ensure that the general public should pre-conceive that mental illness takes you nowhere, and physical illness fulfills your goals. Shorter (9) blames the medical community for initiating this by both becoming obsessed with the Cartesian dichotomy in the 17th century, on the one hand, and ensuring the thriving of asylums on the other when their dichotomy failed. Psychologists (they were actually psychiatrists and neurologists then) lost the opportunity to repair this dichotomous rift at the turn of the 20th century, when they had brief promise with ‘neurosis’ as a disorder of ‘function of the nervous system’, suggesting both mental and physical events could be entwined, rather than simply ‘madness’–a non-bodily disease. That period of promise could have continued along the exploration of a multidimensional approach to illness, but instead there was Freud. Psychiatrists and psychologists have never really been taken seriously since by the medical community, except as a reaffirmation of the rift between ‘medicine of the body’ and ‘medicine of the mind’. Psychologists have since spent decades manufacturing victims and have ensured a general disdain for them among the general public, the medical community, and the insurance systems paying for this victimization (10). So the medical community in its historical pattern now precludes the urgent consideration by the patient and physicians that their symptoms might not be due to a bodily disease. Physicians are true somatizers. Just like patients, when pain occurs, a physician makes a long list of organic causes first, and may not even wish to consider psychologicial factors at all, or at the best at the very end of the list. They are trained to ‘rule out organic first’, then seek ‘non-organic’ rather than assessing the whole individual immediately. The result is that a physician will not let a psychologist near a patient for a long time, and the insurers, having been routinely robbed by psychologists manufacturing victims, are loathe to in-
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clude psychologists at any stage other than detection of malingering (10). It is thus irrelevant that there is a ‘critical period’ for therapy. A million studies could define that critical period, and still we would not advance a treatment strategy. This is the paradox, The Ferrari–Kwan–Friel paradox, if you will. Our model of these patients is based on the factors that simultaneously preclude clinical application of the model. We understand the behavior of the patient, but cannot intervene with that knowledge. The more we know about what causes these patients to behave as they do, the more we see the obstacles to application of that knowledge. We exist in a society where we (the health care community) are unable to access this critical period, because of the motivations of the patient, of the medical community, and of ‘victim-manufacturing’ psychologists. That is the crux: Few are motivated, or even if motivated, allowed to access that critical period for fear of loss of one’s goals (the patient), incrimination by others and/or loss of one heirachial/dichotomous status in health care (physicians), and the current reputation of psychologists. This should not be a discouraging revelation. It is a fact that the legal realm is not the same as the clinical realm, and one should not expect models to readily be applicable in each. The model is still very useful, very much so as a descriptor of the illness mechanism, and in assisting the trier of facts in the legal realm. It thus still may serve a valuable societal purpose. REFERENCES 1. Ferrari R., Kwan O. The no-fault flavor of disability syndromes. Med Hypotheses 2001; 56: 77–84. 2. Ferrari R., Kwan O., Friel J. Cognitive theory and illness behavior in disability syndromes. Med Hypotheses 2001; 57: 112–114. 3. Kwan O, Ferrari R, Friel J. Tertiary gain and disability syndromes. Med Hypotheses 2001; 57: 459–464. 4. Parsons T. Social structure and personality. London: CollierMacMillan; 1964. 5. Ferrari R., Kwan O. Fibromyalgia and physical and emotional trauma:how are they related? Comment on the article by Aaron et al. Arthritis Rheum 1998; 42: 828–830. 6. Getz L. Clinical concepts and dilemmas between disease and aversive life events. Scand Work Environ Health 1997; 23(suppl. 3): 91–96. 7. Aronoff G. M. Chronic pain and the disability epidemic. Clin J Pain 1991; 7: 330–338. 8. The writings of Henry fielding. Amelia. Book II, chapter IX. London: William P. Nimmo 1878:523. 9. Shorter E. From paralysis to fatigue. New York: Maxwell Macmillan; 1992. 10. Dineen T. Manufacturing victims: What the psychology industry is doing to people. Robert Davies Publishers; 1996.
ª 2002 Elsevier Science Ltd. All rights reserved.