Publications
APS Bulletin • Volume 14, Number 5, 2004
Pain as Path
Mark Sullivan, MD PhD, Department Editor
If We Are to Understand Pain and Help Our Patients, What Do We Need to Do Differently?
Stuart W. Derbyshire, PhD
A recent Clinical Updates from the IASP press lamented the fact that patients rarely seem to follow the desired course of a multidisciplinary program, from pain-related incapacity, to a return to work and a rewarding and gratifying life (Livengood, 2004). The author proposes that a major obstacle to success is the doctor’s presumption of what makes for a rewarding and gratifying life. Being busy and working long hours might appeal to an ambitious physician far more than to someone who wants to be able to enjoy his or her garden and grandchildren.
Supplanting patient goals with your own is certainly one way to undermine the rehabilitative process, as might a failure to reach agreement on the goals and treatment and a lack of adherence to the treatment program by the patient. To believe that these problems can be addressed, however, is to expect that a certain kind of relationship between patient and doctor can be engineered.
The contradictions of therapy
Outwardly it seems commonsensical that the promotion of positive attitudes toward pain with sensible and achievable behavioral goals is bound to provide improvement. Some decision, however, has to be made as to what constitutes a positive attitude and a desirable life goal. Making such decisions within the patient-doctor setting inevitably requires a certain loss of autonomy for the patient—autonomous individuals do not negotiate life goals with their doctor. The hoped-for empowerment of the patient, therefore, is directly undermined by the third-party intervention to discuss how his or her life should be constructed.
At root this is why many patients balk when psychological or psychiatric treatment is suggested. There is the implication of craziness, which is not enticing, but there is also an implicit recognition that life has gotten beyond control, not because of a physical ailment but because of an inability to cope or to manage one’s own affairs. An admittance of mental frailty and the acceptance of professional guidance to lead a normal life are not things we should expect to yield easily.
A number of factors have combined over the past 30 years, however, to break this reluctance down. There have been a series of campaigns to highlight the dangers of not seeking help and to remove the stigma of mental health. Childhood abuse, bullying at school, work stress, post-natal depression, social anxiety, racial discrimination, and many other threats to psychological health have been identified and communicated to the public with exhortations to seek therapy or medication (Fitzpatrick, 2000; Furedi, 2003; Lee, 2004; Wainwright & Calvan, 2002). A failure to “get help” is often associated with increased risk to physical health, such as heart problems in type A individuals, or with extreme acts of violence such as in the case of Andrea Yates, who took the lives of her five children while suffering extreme puerperal psychosis. At the same time, an increasingly healthy population that is living longer and more affluently, at least in the Western world, is, ironically, more likely to be concerned with problems of disability both real and imagined (Mathers, Sadana, Salomon, Murran, & Lopez, 2001; Mullan, 2000). Finally, the affiliations and institutions that people relied upon to navigate their lives, including the church, work-based collectives, and the family, have in recent years become far less dependable sources of guidance and comfort (Furedi, 1999).
A noticeable consequence of increased awareness of threats to psychological health is the breach of the barrier between the patient’s illness and person. When my wife visited our new family doctor for the first time in 2000, for example, the doctor inquired whether she was “safe” at home. This is not unusual; there has been a decisive shift towards a more proactive approach to health and an expansion of what health means (Fitzpatrick, 2000; Horton, 2004). Physicians are continuously advised to seize the opportunity when seeing patients to inform them about the dangers of their lifestyles. It is the rare doctor who does not subscribe to “wellness” intervention, including medical checkups, health-risk appraisal, screening tests, and preventive lifestyle advice. And it is a rare patient who is unaware of the need to quit smoking, reduce caloric intake, watch their units of alcohol, and stay “safe.”
It is worth emphasizing how different this is from a more traditional doctor-patient encounter. In this case, the patient seeks out a doctor and necessary medication to facilitate a return to a normal life. For the doctor to engage in discussion of the patient’s behaviors and life goals would be to transcend the boundary between the illness and the patient. The depersonalized character of traditional diagnosis allowed the condition to be objectified as something “out there,” independent of the sufferer’s person (Fitzpatrick, 2000).
Objectification of patients, epitomized by the doctor who talks of “the appendix in bed 3,” is no longer a celebrated practice (Horton, 2004), and certainly it is nice to have a doctor who can relate to you as a human being. Nevertheless, some objectification of disease and illness is warranted to facilitate progress through the mesh of mind-body interactions. Doctors are uniquely positioned, and uniquely trusted, to peer through the fog of distress to examine the disease that lies beneath. A doctor who engages our mental distress, therefore, raises suspicion as to his or her competence. Efforts to meet patients on their own terms and to reconstruct the doctor-patient relationship as a partnership of equals have the unfortunate consequence of minimizing the doctor’s expertise and authority.
Encouraging patients to become reliant on a source of outside professional help when suffering emotional distress has two paradoxically negative consequences. In the first instance, such dependence threatens the self-esteem and autonomy of the patient. At the same time, the patient’s humiliation is compounded when the very process of seeking help reveals the professional source to be less than authoritative.
Changing world, changing consequences
An advocacy role for medicine is not, in itself, a new thing. Humanist beliefs about the rights and dignity of the mentally ill, for example, motivated the movement to reform the asylum system and provide respect and support to those in need. A basic humanism also motivated early attempts to mitigate the pain and suffering of patients in the final stages of cancer. The development of the hospice and pain clinic embodied the desire to provide those who suffer with comfort and dignity (Melzack & Wall, 1988). Recently there have been important efforts to avoid unnecessary and largely ineffective surgeries and other aggressive therapies for chronic pain, which are encouraged by the strict medical model of disease, embodied in the traditional doctor-patient relationship described above. The current APS campaign, “Dream No Small Dreams,” contains the same humanist ideals that have inspired earlier acts of advocacy.
What is different, however, is the context in which these shifts in medical priority are taking place. The world has changed dramatically over the past 30 years. The certainties of work, political affiliation, family, and community have been radically altered and undermined. A series of defeats to trade unions, beginning in the early 1980s, has been followed by the collapse of the Soviet Union and its satellites, while other collective organizations from the Catholic church to the Boy Scouts have faced a series of internal problems and scandals. The family is also less secure than in the past, with high rates of divorce and one in three children being born out of wedlock. Even medicine has faced internal strife and external attack (Fitzpatrick, 2000; Furedi, 1991).
My point is not to assess whether these changes are for the better or worse of society, but to simply point out that a negative reaction to circumstances is, in contrast to the fairly recent past, more likely to take an individual than a collective form. In a world in which the apparatus of collective struggle has been dismantled, the project of transforming the economic and work organization of society abandoned, and community and professional affiliations discredited, the frustrations, antagonisms, and inequities of everyday life are increasingly likely to be internalized and subsequently expressed as medical problems or personal grievances.
A number of recent books have linked the rise of a patient-centered approach and growing popularity of a social model of health and disease with increases in patients reporting functional pain, including fibromyalgia, repetitive strain injury, irritable bowel syndrome, nonspecific low back pain, and so forth (Fitzpatrick, 2000; Furedi, 2003; Wainwright & Calvan, 2002). In the absence of any physical pathology, medical professionals are obliged to rely heavily on the claims made by the patient. A major plank of pain advocacy has been the insistence that complaints of pain be taken seriously, regardless of whether the complaint is consistent with more objective clinical measures. There are sound reasons for this advocacy, but it can blindside doctors to the possibility of a somatic complaint masking psychosocial problems and can encourage a doctor-patient relationship that is unhelpful for both parties. The loss of many traditional collective forums, which would in the past have resolved feelings of displacement, estrangement, and meaninglessness, and provided authoritative guidance for behavior, makes such a risk greater today than before.
Malingering
With fewer options for resolving discontent with the circumstances of life, that discontent is more likely to find expression as a medical problem in which negative feelings are justified by what appear as consequences of disease. The biopsychosocial framework, based on the proposition that an individual’s emotions and behavioral activity are relevant to the experience of pain, facilitates the transformation of negative feelings into symptoms, which are then described as a syndrome. Even if a cure is not offered immediately, there is hope and legitimate recognition. Perversely, the disease label can become attractive as a source of new identity, providing a rationale for withdrawal and other behavior that might otherwise be a threat to self-esteem.
To some extent, this type of scenario is recognized within medicine as the problem of malingering, but the problem is usually rejected as being both rare and rarely effective (Khostanteen, Tunks, Goldsmith, & Ennis, 2000; Sullivan, in press). Malingering, however, is only one strategy for managing feelings. Hochschild (1983) makes a useful distinction between surface acting, faking an emotional state we do not feel, and deep acting, which entails consciously restructuring feeling and action into conformity to abolish any deceit.
Various normal and banal experiences being viewed as a threat to health are examples of cultural signals encouraging the restructuring of experience as illness. The belief that mundane activities such as eating, drinking, making love, breathing city air, using a cell phone, or lying in the sun may lead to an early death is strongly embedded in the public consciousness. In a world in which the physical body is considered so fragile, it is hardly surprising that mental strength is viewed as increasingly diminished. This is the era of emotional IQ, counseling, and stress hotlines to address an ever-expanding litany of learning difficulties, depression, anxiety, shyness, addiction, attention deficit disorder, social phobia, codependency, and so on. While people have no inner desire to perceive themselves as ill, the prevailing circumstances and cultural signals provide the public with a ready-made therapeutic explanation of their troubles (Furedi, 2003). Provision of a medical diagnosis provides an interpretative guide for making sense of distress, but because the nature of distress and the causes lie outside the usual remit of medical science, feeling and experience have to be restructured to conform to the demands of the diagnosis. Consequently, the diagnostic label intensifies and prolongs incapacity, even though it can appear as a source of comfort and strength.
The provision of medication, counseling, and therapy, no matter how sound and commonsensical, cannot resolve this problem because it is the very reorganization of negative emotions toward a medical disease, and away from the conditions that gave rise to them, that is a constituent part of the problem. It is not that advice is poorly given or misguided, but that it short-circuits the process by which people learn how to deal with problems through their own experience. Intuition and insight gained from personal experience are compromised in the presence of professional knowledge. The restructuring of thought and emotions toward illness provides an explanation for the problem of control—we are sick and therefore unfit to manage our affairs—and is affirmed through the dialogue with an expert or multidisciplinary team of experts. The patient is disempowered but is given recognition with the promise of understanding and support.
Coping is good for you
Tracking these acts of conscious restructuring presents a methodological difficulty because they are very difficult to quantify. Changes in cultural norms of personhood, ill health, and emotionality have a deeply subjective character that cannot be easily demonstrated empirically. There is also the downside that rejecting medical diagnosis will stigmatize those who are suffering as weak or inadequate. A sharp distinction between those who cope and those who do not is an added burden for patients whose symptoms are so acute and so debilitating that they are physically or mentally unable to function. This may be harsh, but blurring the distinction between copers and non-copers to reduce the stigma attached to medical consultation also has a very definite downside. For those who require psychiatric or other medical assistance, the provision should be there. But to suggest, as our culture now does, that everyone might benefit from therapy or wellness education is an attack on our autonomy and, ironically, a threat to our psychological well-being. Rather than being the subjects of their own lives, people are lulled into becoming the objects of medical attention with their ability to cope and resilience cast into doubt.
Formal study of the patient-doctor dialogue is certainly to be encouraged and can be used to provide empirical support, or otherwise, to the notion that raising awareness of pain and offering support can facilitate the transition from being a coper to being a pain patient. My goal is not to create antagonism between patient and doctor via the latter’s exhortations that everyone be strong. It is not a question of strength so much as valuing the importance of being the agents of our own destiny, something that is being undermined by a medicalisation of society that surpasses the strength of any given patient (Fitzpatrick, 2000). Moreover, focusing on the character of a patient, whether to encourage strength or empathize with distress, undermines the role of a doctor to see past the character of the patient and observe the properties of the living human organism and where it might be failing. Not only is this bad for the patient, it is also detrimental to the authority of medicine.
Summary
While doctors can have an obvious role in the management of a patient’s physical health, their role in the management of the patient’s emotions or psychological state is much less obvious. Where no disease, let alone cure, can be found, the migration toward management of the patient through recognition of a syndrome is understandable but dangerous. The interpretation of subjective expressions of distress, including pain, as a disorder facilitates medical diagnosis but without any hope of an effective treatment. Worse still, current cultural and population factors are conspiring to expand the numbers of people who might seek or fit a diagnosis, which then serves a further blow against their withered agency (Derbyshire, 2004; Furedi, 2003). Further investigation of pain education needs to include the possibility that our efforts act in opposition to our humanist ideals and expectations. We should be prepared to challenge pain advocacy wherever it makes us sick better than it makes us better.
References
Derbyshire, S. (2004). Pain and prejudice. Spiked, May 5, Retrieved October 19 from http://www.spiked-online.co.ukFitzpatrick, M. (2000). The tyranny of health: Doctors and the regulation of lifestyle. Oxford, UK: Routledge.
Furedi, F. (2003) Therapy culture: Cultivating vulnerability in an uncertain age. Oxford, UK: Routledge.
Furedi, F. (1997). Culture of fear: Risk taking and the culture of low expectation. London: Cassell.
Hochschild, A. (1983). The managed heart: The commercialisation of human feeling. Berkley, CA: University of California Press.
Horton, R. (2004). Second opinion: Doctors, diseases and decisions in modern medicine. New York: Granta Books.
Khostanteen, I., Tunks, E.R., Goldsmith, C.H., & Ennis, J. (2000). Fibromyalgia: Can one distinguish it from simulation? An observer-blind controlled study. The Journal of Rheumatology, 27, 2671–2676.
Lee, E. (2004). Abortion, motherhood, and mental health. Medicalizing reproduction in the United States and Great Britain. New York: Aldine de Gruyter.
Livengood, J.M. (2004). Pain education: Molding the trainee-patient dialogue. Pain: Clinical Updates, 12(3), 1–4.
Mathers, C.D., Sadana, R., Salomon, J.A., Murray, C.J.L., & Lopez, A.D. (2001). Healthy life expectancy in 191 countries, 1999. The Lancet, 357, 1685–1691.
Melzack, R., & Wall, P.D. (1988). The challenge of pain. London: Penguin.
Mullan, P. (2000). The imaginary time bomb: Why an ageing population is not a social problem. London: IB Taurus.
Sullivan, M. (in press). Exaggerated pain behavior: By what standard? Clinical Journal of Pain.
Wainwright, D., & Calnan, M. (2002). Work stress: The making of a modern epidemic. Maidenhead, Berkshire, UK: Open University Press.
Dr. Derbyshire is an Assistant Professor in the Departments of Radiology and Anesthesiology at the University of Pittsburgh, PA.