John C. Burnham, The Death of the Sick Role, 25 Soc Hist Med 761 (2012)
Abstract
The concept of the sick role was introduced into sociology in 1951 and was widely used in medical sociology. A sick person at that time would assume a special social role that permitted him or her to deviate from his or her normal social roles. Historians came to utilise the idea of the sick role as well. It was useful to describe social behaviour and expectations for the mid-century period and centuries before, but at the end of the twentieth century, the actualities of illness and medicine made the concept less applicable to that recent time period. The fact that this standard concept no longer applied signalled the advent of a new epoch in the history of medicine around the turn of the twenty-first century.
This paper makes three historiographical points. First, the concept of ‘the sick role’ is a useful idea for historians writing about the mid-twentieth-century period and probably for the preceding centuries as well, although so far scholars have not taken the subject up systematically. Second, by the beginning of the twenty-first century, the concept was no longer functionally applicable to the very recent past. Third, this death of the sick role at the end of the twentieth century signals the end of one epoch and the advent of a new one in the history of medicine.
To make these points, I shall outline the history of the sick role as a sociological and historical concept, including a critical assessment of the reasons that medical historians have used it only occasionally. Beyond suggesting that historians have been missing out on a useful concept, however, I shall argue that there are now strong reasons why historians ofrecent medicine should not use the sick role concept, on the grounds that the conceptual and institutional structure of recent medical practice do not map onto key stages of the sick role as classically defined. It is that disjuncture that alerts us to a basic shift in medicine.
The sick role concept was introduced by the US sociologist, Talcott Parsons, in a book and an article in 1951, when he made it part of his general sociological theory of structural functionalism.1 Parsons characterised illness as a deviance from social norms, a deviance in which a person was unable to function normally as one should in a producer society—working, going to school, keeping house, and similar activities that gave one a social role.2
The concept of the sick role had four aspects, which became known in sociology as ‘Parsons’ Postulates'. First, a person who determines himself or herself to be ill is exempted from ‘normal social obligations’. Second, that person is ‘also exempted from … responsibility for his own state’, an infection or other illness or accident. Third, he or she has to take the responsibility to get out of the sick state as expeditiously as possible. And, fourth, the sick person should seek help to get out of the deviant sick state, including applying to caregivers and doctors, with whom one must cooperate.3
Parsons' postulates, which he based on his own extensive observation, enabled him to distinguish key elements of an illness experience. First, he was able to separate the sick person out from the doctor–patient dyad. As a result, Parsons showed that being sick was in part a social construction (before that term came into use), involving subjective perceptions and interactions with the immediate social environment. Finally, Parsons began to display the process by which this social construction would operate in a society.
The Sick Role in Sociology
The sick role became standard in sociology and particularly in medical sociology by the end of the 1950s. Its success derived in large part from the way it permitted sociologists to conceptualise the experience of the sick person independently of any particular healing entity or establishment. The healer or doctor appeared only at the very end of the process, in the fourth postulate, and then the healer could be in a way subordinate to the experience of someone who fell ill or had an accident. The sick role, properly conceptualised [n.b.], therefore does not involve a ‘patient’ in a dyadic relationship with a doctor. Instead, the sick role is an ahistorical, non-contingent heuristic that could be applied to contingent circumstances when a person experienced an illness.
The immediate appeal of the concept was recognised in 1966 by sociologist Gerald Gordon. For Gordon, this derived from its basis in common sense. The sick role, he wrote, ‘has become one of the more central concepts in medical sociology … [even though] the concept is not based upon systematic observation; it has not been empirically validated nor have its key assumptions been tested. In effect it has been accepted because of its prima facie reasonableness.’4 People in sociology and health care apprehended the meaning of the term, and many found it not only commonsensical but useful.5
After observers like Gordon reported that the sick role had become standard in sociology, a number of sociologists started criticising Parsons' formulation. Some critics politicised it, whilst others advocated general theories that they believed invalidated the structural functionalist theoretical matrix in which Parsons had presented the sick role idea. Uta Gerhardt in particular has written the intellectual history of the ways in which sociologists devised theories that emphasised social conflict, individual initiative and instigations of social actions in ways that were incompatible with functionalism. In the course of the arguments, many sociologists were repelled because they heard from colleagues that functionalism—and the sick role idea—favoured the fascist state or offered a mechanistic parody of social patterns and interactions. Other critics rejected general social patterns or ideal types (of which the sick role was an example). They held that variations and exceptions invalidated any generalisation. Many of the critics offered what today can be viewed as partisan readings of the sick role concept, denying that the concept could be quantified and tested even as other colleagues and practitioners discussed in print ways of applying the idea to actual patients.6
While the sick role continued to hold a place in medical sociology textbooks, albeit in an attenuated and inaccurate form, by the 1990s, the topic came close to disappearing from research publications in sociology.7The immediate reason for abandoning the sick role in sociology, however, was not direct intellectual opposition but a major shift of sociologists' attention from sickness to health. That is, leading medical sociologists of the late twentieth century simply switched from understanding illness to attempting to persuade people to live healthful lifestyles.8 In this later framework focused on prevention and intervention, individual sickness within an individual's social environment generated no traction. The sick role as a description of one type of human adaptation had very limited utility for social activism. It was this specific attribute of the sick role, however—that it was descriptive—that made it sometimes appeal to historians and, incidentally, anthropologists.9
Historians and the Sick Role Idea
Historians of medicine, who deal with patients in different cultures, across time, have utilised the sick role concept only occasionally, and not consistently. As in parts of anthropology, however, some historians over the years have found the idea of the sick role applicable.10 The main reason that most historians did not use the concept of the sick role more often in the mid-twentieth century is that, for the most part, they were writing physician- and investigator-centred histories and so were interested primarily in the physician figure, not the patient, much less the sick person. As historians wrote those iatrocentric histories, they assumed the continuity of the physician figure through time, just as the anthropologists recognised the universality of the healer figure in the form of both the ‘witch doctor’ and the Western physician. Only many years after Parsons published did some medical historians begin to be interested in the enduring figure of the doctor's patient and then, much more rarely, in the point of view of the sick person through history.
For the pioneers of this historical work, getting away from the dominance of the physician figure was very difficult. Even in the articles by N. D. Jewson (1976) and Roy Porter (1985) that are generally held up as the classic pioneering works in the ‘from-the-bottom-up history’ of the patient, both authors were trying to present the patient's perspective but constantly reverted to discussing a social situation dominated by a physician figure. Porter's review of the literature and discussion is particularly interesting because he cited sociological works that included discussions of the sick role and yet, in his own analysis of historical events and conceptualising the patient, he did not use the concept by name or even implicitly.11 Edward Shorter, in his book on the history of patients, also published in 1985, like Porter showed many sensitivities to the problem of being a patient but again, like Porter, did not utilise the sick role concept, even when examining what Porter called ‘the dynamics of bedside practice’.12
In 1988, Roy Porter and Dorothy Porter writing together finally did produce a major historical work explicitly about the experiences of sick people that made Parsons' idea of the sick role central. Indeed, in reviewing the different aspects of what it meant to fall into ill health in the Early Modern period, Porter and Porter included one major chapter entitled ‘The Sick Role’. Using the present tense, the authors observed that the role of a sick person could be manipulative: ‘As Talcott Parsons emphasised, he who adopts the Sick Role makes special demands on his fellows. … He who resents and rejects the claims of the sick exposes himself to disapproval and guilt.’ Porter and Porter found many amusing instances of historical figures who fell ill conveniently or who even deliberately took up the sick role for specific goals—chiefly to get sympathy or money out of those in the socially supportive roles. For illustration, however, Porter and Porter cited an account of howthe poor Duchess of Devonshire had applied to the Duke [of Devonshire] for Succour in her Pecuniary State of Affairs, and … the Duke told her in so positive a manner that He had engaged himself never to do more in the Business, having paid enormous sums, that the Duchess in despair of ever prevailing in this her last and only Resource, fell ill. … The first days the Duke supposed the illness a little put on, but when He understood that She was so bad and in danger of her life, he entreated the Doctor who sat up with her … to assure Her that every wish she had should be complied with … [But] it was too late.As Porter and Porter commented, ‘No one wants to be duped by sickness “put on”. But once its genuineness established itself, it wielded more power than the Duchess could have commanded when well.’13
Porter and Porter did not stop there with the sick role. Succeeding chapters described further how the sick role functioned: ‘Creating Identity’, including hypochondriacal thinking, and ‘Coping and Resignation’. It was true, they wrote, that people faked ‘the high drama’ of sickness and exaggerated the occasions when they could play the role, but ‘hypochondriacism gained only limited tolerance in a society entertaining no inconsiderable suspicion of the sick. The unwell were expected to bear affliction with fortitude, in return for their exemptions and privileges.’14
In trying to evoke what people of Georgian Britain felt, the authors throughout their book recognised clearly not only the ahistorical subjective experience of illness but the many historically specific social expectations that came with the sick role, including the duty of close family members to nurse the ill person. Sickness came often, and ‘households doubled as hospitals’. Even in a society in which suffering in the privacy of one's home was common, illness and death in Georgian communities was a matter of common remark and highly-prized gossip in local communities and groups. Visiting the sick was often considered a religious and moral duty. One Nonconformist was ‘very industrious in visiting the Sick, instructing them and praying with them; and in this he would say, he aimed at the good, not only of those that were Sick, but also of their Friends and Relations that were about them.’15
The Sick Role as a Historical Problem
In the second half of the twentieth century, as historians were coming to view diseases as in some part social constructions, it was only appropriate that scholars should begin to take account of the social nature of the illness experience.16
Historians attempting to write about sick people in general were taking one of two separate approaches. One was to try to downplay illnesses as such and to frame them within a larger biographical story. Being sick was just a bump (in the case of acute disease) or a continuing factor (in chronic disease) in a particular person's life course, not a social phenomenon in itself. One excellent example was Shelia Rothman's 1994 book about people who were suffering from tuberculosis in the nineteenth century. In the dissertation that preceded the book, Rothman declared that she was writing ‘life histories not case histories’. In her book, she nevertheless still defined tuberculosis ‘invalids’ exactly according to the sick role formulation (without noting the term or source of her definition). Yet when she mentioned Parsons specifically, it was to deny what she believed was his contention that ‘the sick did, and should, adopt a passive role’, the same reading that other historians apparently had taken from sociologists' secondary accounts and arguments against the sick role. In her actual narratives of the lives of those with tuberculosis, she did not recognisably use or name the sick role.17 Historians' second approach to sick people was to examine doctor–patient relationships. Authors often described situations in which the ill person—still conceptualised as a ‘patient’—had agency because he or she could negotiate with medical authorities or shop in the medical marketplace. These historians portrayed how individual ‘patients’ used agency to deal simultaneously with medical practices and with a disease such as gout or cancer. Usually such scholars have used medical records of some kind. Those records were what was recorded by a physician in private practice or an officer of a medical institution—in either case the identity was that of a ‘patient’ caught up in some social arrangement or hierarchy, not a person who felt sick.18
Such historical inquiries into ‘patients’ also, it turns out, were driven largely by political interest—trying to show the patient point of view in the social hierarchy and written in ways to attack physicians and other authority figures. In such instances, scholars were not fundamentally trying to uncover the experience and perspective of someone who was sick in a given society—which is a different kind of historical enterprise.19 With few exceptions such as I have noted, even in cases in which historians have found autobiographical accounts, or, for more recent times, have used interview material, the usual subjects have not been how did it feel? nor, what did you do to negotiate your illness? Those subjects do sometimes come up in the sources, but the historians' core concern has been restricted to the ways in which someone in the past negotiated health care with health care personnel, especially physicians, and health care institutions—not the person's relationship with general social custom and belief.20
In the final decades of the twentieth century, historians who wrote about the sick person continued to follow this health care-centred pattern of identifying sick people as patients. For those historians, the sick people took on historical identity only as supporters of the doctor's role or, in other cases, when they defied the medical establishment. Meanwhile, beginning around the 1980s, historians who were trying to show that sick people had agency, and were not automatons responding to social cues, discovered a new identity for the ill: consumers—consumers who could make choices for their own health care.21 This discovery paralleled a great shift in Western countries to neo-liberal values identified colloquially as Thatcherism or Reaganism. In medicine, an ill person was supposed to act as an agent who could make a rational choice among the variety of health care options available, including different physicians, who were now lumped together with faith healers, irregular practitioners and purveyors of cures and devices as ‘providers’ of medical care. Historians who endowed their historical patients with 1980s market choice used neo-liberalism to justify the contention that, throughout the past, ill people, as consumers, not patients, were indeed historical agents, just as were consumers of other goods and services.22 It was an ironic ending for sick people whom other historians had often depersonalised as doctors' patients or as mere representatives of various diseases.
Consumer choice was also a neat way to bypass the idea of the sick role. One did not have to ask what it was like to be sick. A historian now gave a sick person importance by his or her agency in choosing some types of health care rather than others.23 As in the larger society, the only social role one had was as a consumer making choices. The feelings or perceptions one had were a private matter without social importance except as they motivated purchasing from ‘the healthcare industry’.24 I shall return to the patient-as-consumer phenomenon in another context, below.
Historians were therefore reluctant to use the sick role idea because they were not trying to detach the sick person from the healer. Moreover, they did not receive support from sociologists, who mostly were on the attack against Parsons or later went off advocating healthful behaviour. And by the 1980s, there was relentless pressure from opinion leaders across US society who emphasised that medicine and illness was all about people in their roles as consumers.
Yet at the turn of the twenty-first century, some leading historians were still showing awareness of the sick role casually. In his 1998 book on illness, Robert A. Aronowitz in places mentioned the sick role and even went to the trouble to add an extensive note defining the term. Barron Lerner a few years later commented, ‘As consumerism emerged in medicine in the 1970s and 1980s, Talcott Parsons's [sic] “sick role“—in which ill patients passively put faith in their doctors—had become passé …’ In each of these cases, however, the author still viewed the sick person as a patient and referred only to that part of Parsons' definition in which he mentioned a physician figure.25
The Sick Role and Parsons' Postulates in the Last Decades of the Twentieth Century
It is with this background that I would like to suggest that the sick role might be helpful in understanding medical history in developed countries from the Early Modern period to the middle decades of the twentieth century—but not after that. I therefore address the question of how changes in society and in the practice of medicine, at least in the United States, made the sick role very much less applicable to the period that began after the middle decades of the twentieth century. Indeed, by the early twenty-first century, alert scholars already sensed that the sick role might not apply in the new epoch in which they were working. In 2009, for example, historian Charles Rosenberg remarked, ‘In a world of ever-expanding screening and often symptomless disease, the sick role is increasingly contingent …’26
The relevant social changes involved alterations or even partial failures in social institutions such as the hospital or the doctor–patient relationship. By the 1970s, according to Christopher Lasch, the age of narcissism had set in, shifting or blunting many traditional social relationships.27 Patients' ailments increasingly tended to be chronic, not acute, illnesses.28 Among the educated, there were reasons to question how real, that is, biological, many illnesses were.29
What were the changed social circumstances in which any typical or representative sick person might find himself or herself at the end of the twentieth century? The basic elements in the sick role as a sick person might have experienced it suggest the impact of social changes on what it meant to be sick in many modernised, post-industrial countries. Already in the 1980s, two French sociologists, seeking to hear ‘sick people speak’ and recount their perceptions, concluded:
“This is not as easy as it may sound, for the individual who suffers biological disorder and pain feels that there is something inexpressible about them; it is hard to put illness and the body into words. Moreover, in our society the discourse of medicine about illness is so loud that it tends to drown out all the others. Caught between their undecipherable physical experience and the ordered and dominating language of science, today's sufferers are often at a loss to know whether they can speak, to whom they can speak, and how they can speak”.30
As the record of historians shows, except indirectly in places in histories of disease categories, the discourse of medicine did indeed tend to drown out historians' search for the social experience of being sick.
Fortunately, Parsons as a sociologist with his ‘postulates’ set up a clear schematic framework that makes systematic examination of the recent operation of the sick role possible. The evidence I offer is mostly what is nowadays largely common knowledge and is USA-centric. The point is not so much how historical change challenged any of the postulates in itself but rather how new social conditions rendered the functioning of the sick role difficult or impossible after the mid-twentieth century and signalled the existence of a major historical discontinuity. It is ironic that the ahistorical sick role suddenly encountered a time when it indeed became historical.
In the first postulate, the person had to detect evidence that he or she was falling ill. Traditionally, the evidence consisted of two kinds, signs and symptoms, on the one hand, and subjective feelings, on the other. One could develop visible changes in the body such as swellings or spots or bleeding or an inability to function normally—to the point that some idea of illness explained the clear evidence. Or one could have subjective sensations, such as chills, pains, cramps, weakness or malaise. Usually there was a combination of factors that would lead someone to conclude that he or she was ill.31
Evidence suggests that by the beginning of the twenty-first century, the experience of illness had changed in certain fundamental respects. Though, to be sure, signs and symptoms of old persisted, there now were many more possible ways to become ill without signs and symptoms—in addition to being in a stage too early to be discerned. The illness could be ‘subclinical’, that is, not detectable by obvious signs. Of course many subclinical diseases were known and could be detected in the mid-twentieth century or earlier, but until late in the century, this pattern did not dominate medical practice. Most often now, an illness could be determined only by laboratory readings. The cascade of technology that came in the decades after the Second World War (a factor usually seriously underestimated) went much further and created a whole universe of potential pathology within a person's body, such as the extended early stages of breast or prostate cancer, of which the person would be unaware.32 The process of medicalisation—extension of the borders of medicine—further created illnesses that, in an earlier time, the carriers of social convention would usually have considered normal or under some other category such as morals or personal choice.
The second step in taking on the sick role is communicating to socially significant others the fact that one feels ill. In classic terms such as Parsons used, one would signal that he or she was deviating from customary and familiar social norms by leaving one's usual social role for the sick role. But one of the uses of the sick role concept is showing that ‘feeling sick’ is usually a social act that must be legitimated by immediate associates. ‘I feel sick’ should be followed, socially, by such confirmations as ‘You look sick’. And from such spontaneous responses, the scholar learns much about society, illness and health care.33 An additional purpose of the communication would be to mobilise a response of care and support, and so, in that case, one category of people to whom one would communicate would be relatives and companions. A second purpose would be, where appropriate, to alert authorities in the bureaucratic social environment that one was giving up normal functioning and responsibility, typically at work, at school or at home.
By the end of the twentieth century, however, communication about one's illness was becoming difficult, at least in the USA. Most of the public discussion of privacy was cast in a legal framework, particularly the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA). Anyone in authority was prohibited by law from communicating within any community news of the person's deviant status or explaining why someone was not functioning as usual or could be labelled sick.34 What happened was that in the last decades of the century, journalists, lawyers and policy makers published many assertions about personal privacy, particularly privacy concerning medical and health matters. Many, if not most, people confused personal privacy with medical confidentiality, which was the traditional trust in physicians and their proxies not to reveal medical secrets. Medical records in particular became the objects of elaborate institutional and legal protections that intensified as electronic records and communication became general.35 Feeding into such concern, for example, was the discovery that individuals who visited health information websites could become identified and targeted by marketers of health products. In the health field, managers and lawyers urged all personnel to take steps to prevent an organisation's ‘information disaster’.36 Because of HIPAA and ‘ethics’, doctors and nurses in particular became afraid to discuss the condition of any patient or potential patient with even close family members of the patient, a fear of which members of the public were soon aware.37
Between the lawyers and public fear, people who might have wanted to communicate information about someone's possible illness or who might have wanted to mobilise social resources to support that person in his or her illness encountered very strong social sanctions against communicating what many people now imagined was ‘private’. Altogether, by the 1990s the immediate social communications that would initiate a person's taking on the sick role were substantially inhibited in many parts of American society.38
The real problem, however, came in the next step in Parsons' postulates: getting the proper social agents to respond appropriately to any communication that did get through. The first response would have been to validate the sick person's assertion that he or she really was sick. Implicit in that validation was accepting that the sick person was not responsible for his or her sickness. Only then could the social agents choose to excuse the person who had taken on the sick role. This whole process could be straightforward and routine, or it could be extremely difficult, particularly in cases of chronic illness such as multiple sclerosis or sickle cell anemia in which the symptoms were not constant and in many other respects were confusing.39 In other instances, employers made it a policy not to distinguish vacation time from sick leave. That way it was the employee who could decide to be ‘sick’ or to have a vacation, and the employer did not need ever to recognise or validate a sick role.40
A sick person therefore often could escape ordinary activities and responsibilities only with great difficulty. In the late twentieth century, it was becoming increasingly problematic to get oneself labelled as deviant to begin with.41 The barriers to qualifying for Social Security or workers' compensation disability benefits or for medical insurance benefits were notorious. In parts of society in which leaders celebrated diversity, difference and tolerance, the category of deviant became more difficult to obtain, particularly for people with cognitive and emotional afflictions.
Many of the new patient rights and disability groups indeed insisted that they not be treated as people whose deviances needed to be remedied or corrected. Many in the community of deaf people resisted cochlear implants, for example, because accepting treatment showed that their condition was deviant. Indeed, as Aaron Mauck points out, there was a significant and striking shift in which single-disease advocacy groups such as the American Diabetes Association turned their focus away from supporting preventive and corrective measures to efforts to gain recognition of the equal access and participatory rights of people labelled as sufferers from those diseases—which is different from support for those who became deviant through no fault of their own.42
In the late twentieth century, the claim of the ill to escape responsibility for their conditions met still another challenge. They were no longer able to argue that they were not responsible for the symptoms and disabilities that had come upon them. As early as 1976, an official US government task force report referred to ‘the overriding importance of individual behavior and lifestyles as major factors in the nation's unsatisfactory health status …’.43
As one sociologist noted in 1979, a person had the choice to play the sick role or ‘the healthy role’. In many social arenas, people were expected ‘to avoid the sick role by engaging in healthy role behaviors’.44 Or, in another formulation, people who behaved in risky ways, such as smoking, ignoring safety warnings or failing to exercise, had only themselves to blame and therefore, by implication, lost the right to claim temporary freedom from ordinary activities. Indeed, the personal health campaigns of the late twentieth century utilised health education and also commercial marketing to impose some strong social controls on at least middle-class people.45Employers could freely deny a sick role and rid themselves of employees who became an economic burden because of their own actions.46
The last obligation of the traditional sick role was that one had to try to get well and resume one's normal functioning. But times were now different. Even if ill people had to some extent established their sick roles, they found that the institutional bases from which a sick person might seek healing had greatly narrowed the amount and duration of any support. Where medicalising childbirth had once offered many working-class women a haven with several days in hospital care, childbirth became demedicalised to a substantial extent, particularly among managed care programmes, and legislation was necessary to prevent the extremely premature discharge of birth mothers with their babies—the so-called drive-through deliveries. Surgical patients received similar treatment as medical authorities found they could save hospital costs by carrying the great Second World War popularisation of ‘early ambulation’ to an extreme.47 As probably the bulk of Americans came to learn from personal observation, seriously impaired and suffering patients were denied institutional recognition as sick or disabled and were wheeled out into the street to be on their own.48 In the changing circumstances of both society and health care of the late twentieth century, the mechanisms of becoming ill and gaining social support were not surviving as fundamental social phenomena. One social change, already noted above, gave a final evisceration to established customs embodied in the sick role: the transformation of the physician into a service ‘provider’ and the patient into a ‘consumer’—the replacement of the medical relationship with yet another market relationship.49 At first glance, the adoption of terms from classical economics might suggest that reconceptualising health into a commercial model came from the influence of economists. Economists, however, came late to the game, although their market model often hovered in the background when policy makers looked at medicine.50 The best example of economists' implicit influence was the appearance of the term ‘provider’ in the original Medicare law of 1965. Yet at that time, viewing the patient as a consumer was still uncommon.51
As Nancy Tomes has made clear in her historical work, it was the consumers' movement and the idea of consumers' rights in the 1960s that brought in the idea of using buyer choice to improve the quality, if not the availability, of health care. For medicine, the women's movement provided a particularly strong dose of contested social relationships. In the mid-century decades, both critics and reformers of medicine began to use the consumer identity to try to protect patients.52
Then, just as consumerism as a reform movement peaked in the 1970s, a dominating new ideology swept in: faith in ‘the market’. Large business interests took over from protest movements the idea of consumer power. By the 1980s, consumer choice had become a justification for making all medical decisions business decisions—and entrepreneurs who took up the idea of consumer choice were confident that they could manipulate ‘choice’ to their own ends. The ultimate ironic denouement was managed care, in which patients and physicians found themselves caught in a market system that substantially deprived both of their autonomy.53
This was not a system in which the traditional sick role could operate meaningfully. According to these new social standards, instead of seeking support and legitimation, a person who felt ill needed merely to choose to purchase services and commodities. This arrangement worked particularly well in a society in which the traditional caregivers were now at work (often of course as caregivers whose services could be purchased). Women, especially, were often not available, as they had been earlier, to turn each home into a hospital. Now the obligation of a sick person to seek a socially approved healer could mean in practice that any commercial service was automatically socially approved. Religious and superstitious providers were legitimated by obtaining compensation on a basis equal to the best standard, conventional medical care. To the horror of many leaders in the medical profession, both physicians in the 1980s and, later, pharmaceutical producers were turned loose like hucksters to advertise directly to ‘consumers’.
A New Kind of Medicine
There was yet one more development. Around the turn of the twenty-first century, a number of shrewd observers of the medical scene (including both historians and sociologists) became convinced that the whole practice of medicine was taking a different turn.54 In part, physicians were responding to the greatly increased prevalence of chronic disease as opposed to acute disease. As early as 1982, one author wrote about the ‘at-risk role’, as opposed to the ‘sick role’.55 In the new practice of medicine, a patient came to the clinic not because of symptoms so much as for screening or because that patient realised that he or she was a member of a demographic group at risk for some disease such as diabetes, depression, breathing problems or coronary failure.
In this new health care, physicians would treat a patient for an illness that he or she might get, such as coronary disease based on too high a level of cholesterol, or exposure to environmental or genetic elements known from the so-called epidemiological revolution in medicine. While this revolution had long been gestating among experts, the main symbol that a person without symptoms might fall into a risk category was the popular and medical conclusion in the 1950s that there was a robust statistical correlation between smoking and ultimately developing lung cancer. In addition, subsequent advances in technology and laboratory determinations, particularly imaging, gave physicians and their technician colleagues a way of doing something for a patient who did not yet perceive that he or she was ill.
Jason Karlawish has named this recent style of practice ‘desktop medicine’. The physician, using a computer, takes what he or she can learn about an individual patient and compares it with networks of large data sets to see what risk groups the patient will fall into. ‘The clinician’, Karlawish explains, ‘then uses these risk factors to determine whether the patient is at sufficient risk to recommend treatment’. Only then will a patient have the opportunity to begin medical rituals of taking pills and periodic monitoring.56 In desktop medicine, the patient does not have to feel ill and does not have to ask to be excused from work, school or household duties. She or he can, however, take on the role of consumer and choose what treatment to undergo—or not to undergo any treatment at all.57
Conclusion
If the sick role was not any longer an accurate and appropriate concept to apply to ill people or to asymptomatic patients, why is it an important topic for historians outside of the history of sociology? First of all, the sick role provides another way of measuring and understanding the profundity of the transformation of medicine in the second half of the twentieth century—not least, the transformation of sick people into unsupported consumers in a society in which advertising and purchasing were the determinant forms of social interaction and personal identity. Second, the sick role provides one important opening, beyond the doctor–patient relationship, for viewing illnesses and for feeling sick. The sick role is a reminder that it is possible to consider that not only the biological but the social aspects of disease and illness have significant aspects of universality about them. For many centuries, becoming ill was a major human social as well as biological phenomenon. Once again, the way any society constructed social responses to organic and psychological events tellingly reveals the fundamental processes at work in that society. Third, anthropologists and historians continue to use the idea as a descriptive framing device, perhaps a model heuristic, to find and communicate the sociocultural elements in the experience, in many settings, of being ill.
At the very least, the sick role provides a reference point from which scholars can try to determine and communicate what was involved in any particular setting when illness or accident took a person out of his or her accustomed social roles. For the historian, the sick role concept is not limiting, but enabling.
As with any prescription, however, one should use it only in appropriate cases. With the changes in culture and in the nature of health care in the United States and other developed countries in the late twentieth century and after, the experience of being sick was sidelined in the quest for ‘health’. When historian Roger Cooter in 2004 noted the effective ending of the social history of medicine, he from another point of view was implicitly recognising that the cultural function of medicine, broadly speaking, was changing.58
Historians of course have to adapt to their own times. It would be a loss, however, if presentist, Whig historians left the sick role out from the past where it was clearly operative. At the same time, for historians writing about very recent decades, in which major cultural changes have taken place, the slow demise of the social importance of the sick role in that era is not a fact to be either mourned or ignored.59 It should, instead, inspire us to find new ways of understanding what happened in what has, lately, already become the past.
References
↵1 Two recent scholars have surveyed the extensive literature on Parsons and his sociological theory: Howard Brick, ‘Talcott Parsons's [sic] “Shift Away from Economics,” 1937–1946’, Journal of American History, 2000, 87, 490–514; B. Robert Owens, ‘Producing Parsons’ Reputation: Early Critiques of Talcott Parsons' Social Theory and the Making of a Caricature', Journal of the History of the Behavioral Sciences, 2010, 46, 165–88. A particularly comprehensive biographical and intellectual context is provided by Uta Gerhardt, Talcott Parsons: An Intellectual Biography (Cambridge: Cambridge University Press, 2002).
↵2 Talcott Parsons, ‘Illness and the Role of the Physician: A Sociological Perspective’, American Journal of Orthopsychiatry, 1951,21, 452–60. Talcott Parsons, The Social System (Glencoe IL: The Free Press, 1951), esp. ch. 10.
↵3 Ibid.
↵4 Gerald Gordon, Role Theory and Illness: A Sociological Perspective(New Haven: College and University Press, 1966), unpaginated introduction.
↵5 Parsons had actually, without acknowledgement, taken the name and part of the idea of the sick role from a graduate student who had had training in anthropology and had published a report of social patterns that he observed and recorded carefully in the 1940s in an army unit. What Parsons added was a framework: the social patterns with which societies deal with the special deviant role assumed by the sick person and try to integrate the person back into society, in part through the offices of a healer. Parsons also incorporated the sick role into his fundamental social theory. John Burnham, ‘Why Sociologists Abandoned the Sick Role Concept’, paper presented to the meeting of the European Society for the History of the Human Sciences, 2011.
↵6 Uta Gerhardt, Ideas about Illness: An Intellectual and Political History of Medical Sociology (Houndmills: Macmillan, 1989). Uta Gerhardt, ‘Parsons, Role Theory, and Health Interaction’, in G. Scambler (ed.), Sociological Theory and Medical Sociology (London: Tavistock Publications, 1987), 110–33, confronted the critics and commented (114), ‘Possibly the impact of the continuous misreading of Parsons's [sic] theory has become stronger over the last twenty-five years than the impact of the authentic contents of the original works.’ See also W. C. Cockerham, ‘Medical Sociology and Sociological Theory’, in W. C. Cockerham (ed.), The Blackwell Companion to Medical Sociology(Malden MA: Blackwell, 2001), 3–22; and S. Quah, ‘Health and Culture’, in Cockerham (ed.), The Blackwell Companion to Medical Sociology, 23–42. A seminal document in politicising the sick role was Howard Waitzkin and Barbara Waterman, The Exploitation of Illness in Capitalist Society (Indianapolis: Bobbs-Merrill, 1974), ch. 3, where phrasing appeared that was still being repeated by others decades later.
↵7 Gerhardt, Ideas About Illness. Burnham, ‘Why Sociologists Abandoned the Sick Role’. See Sociological Abstracts. A few publications, however, did appear around the turn of the twenty-first century. For a widely cited counter-example from later years, see Simon Williams, ‘Parsons Revisited: From the Sick Role to … ?’, Health[London], 2005, 9, 123–44.
↵8 Samuel W. Bloom, The Word as Scalpel: A History of Medical Sociology (Oxford: Oxford University Press, 2002), 269–270. Burnham, ‘Why Sociologists Abandoned the Sick Role’.
↵9 The most notable anthropologist to use the concept was Arthur Kleinman, who found the role operating, for example, in Chinese society. Arthur Kleinman, Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry (Berkeley: University of California Press, 1980), esp. 77, 119, 194–95. Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition (New York: Basic Books, 1988), esp. 159–61. Later continuing interest among anthropologists is found, for example, in Eugene B. Gallagher and Janardan Subedi, ‘Studying Health in Developing Societies: A Conceptually-Informed Research Agenda’, Central Issues in Anthropology, 1992, 10, 127–33. How closely historians and anthropologists functioned together is seen where Yale anthropologist William Caudill (‘Applied Anthropology in Medicine’, in A. L. Kroeber (ed.), Anthropology Today: An Encyclopedic Inventory (Chicago: University of Chicago Press. 1953), 779–80) quoted historian Erwin H. Ackerknecht (‘The Role of Medical History in Medical Education’, Bulletin of the History of Medicine, 1947, 21, 135–45) as he brought together historical and anthropological ideas about the social construction of ideas about illness and tied both to the then-new concept of the sick role. See also Erwin H. Ackerknecht, ‘Problems of Primitive Medicine’, Bulletin of the History of Medicine, 1942, 11, 503–21. Gordon (Role Theory and Illness, 97), as a sociologist, was not content with a concept that ‘has primarily appeared in studies of an anthropological or psychological nature’.
↵10 For example, Daniel M. Fox, Power and Illness: The Failure and Future of American Health Policy (Berkeley: University of California Press, 1993), 65–7. One twenty-first-century summary of many parts of the history of medicine literature uses the idea of the sick role as a major framing concept: John Burnham, What Is Medical History?(Cambridge: Polity Press, 2005), esp. 37–43. A striking piece of evidence that historians might use such a concept is the fact that in 1951, exactly the same year that Parsons introduced ‘the sick role’, the foundational historian of medicine, Henry Sigerist, in his general history of medicine wrote about the universal category of ‘the sick man’. Sigerist drew upon the work of ethnographers and also work by historian Erwin Ackerknecht to describe the special social status of a person who becomes seriously ill or injured: ‘Such an occurrence invariably and, I may add, in all civilisations gives the sick man a special position in society, one which is determined primarily by two factors, the physical condition in which the patient finds himself and the attitude of a given society toward the phenomenon, disease—its valuation of health and disease’. H. E. Sigerist, A History of Medicine, 2 vols (New York: Oxford University Press, 1951), I:153–61, and, e.g., 426. Subsequent historians did not explicitly follow up on Sigerist's formulation.
↵11 N. D. Jewson, ‘The Disappearance of the Sick-Man from Medical Cosmology, 1770–1870’, Sociology, 1976, 10, 225–44, took ‘the sick-man’ as an undifferentiated given and focused on bedside and hospital medical care. Roy Porter, ‘The Patient's View: Doing Medical History from Below’, Theory and Society, 1985, 14, 175–98, did mention ‘the sick person–doctor interaction’ (193), but he insisted that sick people were not ‘a class apart’ (192) that could be treated as a self-contained historical group.
↵12 Edward Shorter, Bedside Manners: The Troubled History of Doctors and Patients (New York: Simon and Schuster, 1985); see, e.g., 121. Roy Porter, ‘Reforming the Patient in the Age of Reform: Thomas Beddoes and Medical Practice’, in Roger French and Andrew Wear (eds),British Medicine in an Age of Reform (London: Routledge, 1991), 10.
↵13 Roy Porter and Dorothy Porter, In Sickness and in Health: The British Experience 1650–1850 (London: Fourth Estate, 1988), esp. chs 11–13, quotations from 188–9.
↵14 Ibid., 235.
↵15 Ibid., 6, 195 (emphasis original).
↵16 In Early Modern Britain, Porter and Porter wrote ‘for every party, sickness was inseparable from the assertion of power’ (228).
↵17 Sheila M. Rothman, ‘Narratives of Illness: Gender and Disease in Nineteenth Century America’ (PhD diss., Columbia University, 1990), abstract and iv, xviii–xix. Rothman noted that men had more recourse to the sick role than did women. Sheila M. Rothman, Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in American History (New York: Basic Books, 1994), 4, 8.
↵18 Guenter B. Risse and John Harley Warner, ‘Reconstructing Clinical Activities: Patient Records in Medical History’, Social History of Medicine, 1992, 5, 183–205. Jonathan Gillis, ‘The History of the Patient History since 1850’, Bulletin of the History of Medicine, 2006, 80, 490–512.
↵19 See the incisive analysis of Flurin Condrau, ‘The Patient's View Meets the Clinical Gaze’, Social History of Medicine, 2007, 20, 525–40.
↵20 The major exception has been in cases of mental illness, in which the ill have on their own recorded their experiences of illness and social reaction, or lack of it. Perhaps the best recent example in the general field of medicine is the masterful account, based centrally on interviews, of Lucinda M. Beier, Health Culture in the Heartland, 1880–1980 (Urbana: University of Illinois Press, 2009). A recent example on the feelings of sick people is Hannah Newton, ‘“Very Sore Nights and Days”: The Child's Experience of Illness in Early Modern England, c.1580–1720’, Medical History, 2011, 55, 153–82.
↵21 Hilda Bastian, ‘Speaking Up for Ourselves: The Evolution of Consumer Advocacy in Health Care’, International Journal of Technology Assessment in Health Care, 1998, 14, 3–23, explores the variety of late-twentieth-century consumer identities and pressure groups. In Health Is a Community Affair: Report of the National Commission on Community Health Services (Cambridge MA: Harvard University Press, 1966), the term consumer basically means ‘citizen’.
↵22 Condrau, ‘The Patient's View’, esp. 535.
↵23 As did Roy Porter in his landmark 1985 essay, ‘The Patient's View’, 189.
↵24 Chris Shilling, ‘Culture, the “Sick Role” and the Consumption of Health’, British Journal of Sociology, 2002, 53, 621–38, makes some similar connections between the sick role and consumer culture, emphasising cultural change, including the new resources of the internet. Ironically, the sick role as a complex and negotiated role had in fact already given the ill substantial agency; see Angelo A. Alonzo, ‘Acute Illness Behavior: A Conceptual Exploration and Specification’,Social Science and Medicine, 1980, 14A, 515–26.
↵25 R. A. Aronowitz, Making Sense of Illness: Science, Society, and Disease (Cambridge: Cambridge University Press, 1988), 32, 168, 199n. Barron H. Lerner, When Illness Goes Public: Celebrity Patients and How We Look at Medicine (Baltimore: Johns Hopkins University Press, 2006), 64, 68; quotation from 261.
↵26 Charles E. Rosenberg, ‘Managed Fear’, Lancet, 2009, 373, 802–3.
↵27 Christopher Lasch, The Culture of Narcissism: American Life in the Age of Diminishing Expectations (New York: Norton, 1978).
↵28 Chronic illnesses brought into common use terms for ill people in different stages that had politicosocial implications: ‘disabled’ and ‘survivors’. This is not part of my concern here.
↵29 For example, Richard A. Kurtz and David J. Giacopassi, ‘Medical and Social Work Students’ Perceptions of Deviant Conditions and Sick Role Incumbancy', Social Science and Medicine, 1975, 9, 249–55. Peter Conrad, The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders (Baltimore: Johns Hopkins University Press, 2007), explains and describes recent medicalisation and demedicalisation.
↵30 Claudine Herzlich and Janine Pierret, Illness and Self in Society, trans. Elborg Forster (Baltimore: Johns Hopkins University Press, 1987), xi.
↵31 See, for example, Stefan Demjen and Donald Bakal, ‘Subjective Distress Accompanying Headache Attacks: Evidence for a Cognitive Shift’, Pain, 1986, 25, 187–94. F. C. Shontz, ‘The Personal Meanings of Illness’, Advances in Psychosomatic Medicine, 1972, 8, 63–85, displayed the psychological complexities of the decision and tied it to the sick role idea.
↵32 See, for example, Christine Timko, ‘Seeking Medical Care for a Breast Cancer Symptom: Determinants of Intentions to Engage in Prompt or Delay Behavior’, Health Psychology, 1987, 6, 305–28.
↵33 Joel Leon Telles and Mark Harris Pollack, ‘Feeling Sick: The Experience and Legitimation of Illness’, Social Science and Medicine, 1981, 15A, 243–51.
↵34 Some background is described in Robert A. Hiatt, ‘HIPAA: The End of Epidemiology, Or a New Social Contract?’, Epidemiology, 2003,14, 637–9.
↵35 Anne T. Gilliland and Judith A. Wiener, ‘Balancing Between Two Goods: HIPAA and Ethical Compliancy Considerations for Privacy-Sensitive Materials in Health Sciences Archival and Historical Special Collections’, Journal of the Medical Library Association, 2011, 99, 15–22. David G. Foster, ‘Privacy and Confidentiality’, in Elizabeth A. Bankert and Robert J. Amdur, Institutional Review Board Management and Function (Sudbury MA: Jones and Bartlett, 2006), quoted one official definition, ‘Privacy can be defined in terms of having control over the extent, timing, and circumstances of sharing oneself (physically, behaviorally, or intellectually) with others’ (140).
↵36 Jill Callahan Dennis, Privacy and Confidentiality of Health Information (San Francisco: Jossey-Bass, 2000), esp. 32. See, for example, George J. Annas, The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients (3rd edn, Carbondale: Southern Illinois University Press, 2004).
↵37 See the sources cited in the previous note, which contain many examples, and Merida L. Johns, Information Management for Health Professions (2nd edn, Albany NY: Delmar, 2002), 322–7.
↵38 Or, as Lerner (When Illness Goes Public) explained, the media managed the process.
↵39 Marcella Zaleski Davis, Living with Multiple Sclerosis: A Social and Psychological Analysis (Springfield IL: Charles C. Thomas, 1973).
↵40 See for example J. Hart, ‘Healthy Beliefs: Wellness in Action at Company X’, in Carla M. Messikomer, Judith P. Swazey, and Allen Glicksman (eds), Society & Medicine: Essays in Honor of Renée C. Fox(New Brunswick: Transaction Publishers, 2003), 23–41.
↵41 Colin Sumner, The Sociology of Deviance: An Obituary (New York: Continuum, 1994), points out that by the mid-1970s sociologists on technical as well as political grounds were choosing to abandon the category of social deviance in which the sick role was embedded.
↵42 Stuart Blume, ‘The Politics of Endpoints’, in Carsten Timmermann and Julie Anderson (eds), Devices and Designs: Medical Technologies in Historical Perspective (Houndmills: Palgrave Macmillan, 2006), 256–61; Stuart Blume, The Artificial Ear: Cochlear Implants and the Culture of Deafness (New Brunswick: Rutgers University Press, 2010); Aaron Mauck, ‘Managing Care: The History of Diabetes Management in Twentieth Century America’ (PhD diss, Harvard University, 2010), ch. 4.
↵43 Quoted in Robert Crawford, ‘Individual Responsibility and Health Politics in the 1970s’, in Susan Reverby and David Rosner (eds), Health Care in America: Essays in Social History (Philadelphia: Temple University Press, 1979), 263.
↵44 Gail Lee Cafferata, ‘Taking Responsibility for Health’, Journal of the American College Health Association, 1979, 28, 196–200.
↵45 John H. Knowles, ‘The Responsibility of the Individual’, Daedalus, 1977, 106, 1–80. Jonathan M. Metzl and Anna Kirkland (eds), Against Health: How Health Became the New Morality, (New York: New York University Press, 2010).
↵46 Telles and Pollack, ‘Feeling Sick’; Nicolas Dodier, ‘Social Uses of Illness at the Workplace: Sick Leave and Moral Evaluation’, Social Science and Medicine, 1985, 20, 124.
↵47 The early issues of the journal Same-Day Surgery, for example, make the economic motive explicit.
↵48 The most scandalous and tragic demedicalisation occurred as hundreds of thousands of people hospitalised with very serious chronic mental illnesses were pushed out onto the community where they had no protection. Indeed, the only institution left to deal with their social deviancy was the criminal justice system, and the lucky ones ended up in jail. Rael Jean Isaac and Virginia C. Armat, Madness in the Streets: How Psychiatry and Law Abandoned the Mentally Ill (New York: The Free Press, 1990).
↵49 As early as 1965, Daisy L. Tagliacozzo (‘The Nurse from the Patient's Point of View’, in James K. Skipper, Jr. and Robert C. Leonard (eds), Social Interaction and Patient Care (Philadelphia: J. B. Lippincott, 1965), 226–7) described the conflict between the sick role and consumer role in a hospital.
↵50 Daniel M. Fox, Economists and Health Care: From Reform to Relativism (New York: Prodist, 1979).
↵51 US Statutes 79, Public Law 89–97, July 30, 1965, ‘Social Security Amendments of 1965’. The first articles in PubMed to include the term ‘consumer’ in the titles did not come until the early 1960s (there was one 1957 exception), and the first title to include both ‘consumers’ and ‘providers’ did not come until 1969.
↵52 Nancy Tomes, ‘An Undesired Necessity: The Commodification of Medical Service in the Interwar United States’, in Susan Strasser (ed.),Commodifying Everything: Relationships of the Market (New York: Routledge, 2003), 97–118; Nancy Tomes, ‘Patients or Health-Care Consumers? Why the History of Contested Terms Matters’, in Rosemary A. Stevens, Charles. E. Rosenberg, and Lawton R. Burns (eds), History and Health Policy in the United States: Putting the Past Back In (New Brunswick: Rutgers University Press, 2006), 83–110. Further background is in Nancy Tomes, ‘The Great American Medicine Show Revisited’, Bulletin of the History of Medicine, 2005, 79, 627–63. An example of an early use of the term by a reformer is Richard Carter,The Doctor Business (Garden City: Doubleday & Company, 1958), 17, 260; H. M. Swick, ‘Academic Medicine Must Deal with the Clash of Business and Professional Values’, Academic Medicine, 1998, 73, 752, points out that consumer comes from a word meaning ‘to eat completely’, while patient comes from a word meaning ‘to suffer’. Swick believed a physician should ‘care for the suffering’ and that ‘physicians are too often treated as a commodity’. Reference courtesy of Kenneth Ludmerer.
↵53 Tomes, ‘Patients or Health-Care Consumers?’
↵54 Aronowitz, Making Sense of Illness; R. A. Aronowitz, ‘The Converged Experience of Risk and Disease’, Milbank Quarterly, 2009,87, 417–42; J. C. Chunn, ‘The Health Behavioral Change Imperative: Paradigm Shifts and Prevention Mandate’, in J. C. Chunn (ed.), The Health Behavioral Change Imperative: Theory, Education, and Practice in Diverse Populations (New York: Kluwer Academic/Plenum Publishers, 2002), 1–8; William G. Rothstein, Public Health and the Risk Factor: A History of an Uneven Medical Revolution (Rochester NY: Rochester University Press, 2003); Jeremy A. Greene, Prescribing by Numbers: Drugs and the Definition of Disease (Baltimore: Johns Hopkins University Press, 2007), esp. 221–40; Rosenberg, ‘Managed Fear’, was noted above.
↵55 Rita Short Monahan, ‘The “At-Risk” Role’, Nurse Practitioner, May 1982, 42–44, 52.
↵56 Jason Karlawish, ‘Desktop Medicine’, JAMA, 2010, 304, 2061–2.
↵57 The possible place of online social media in this process is not clear at the time of this writing.
↵58 Roger Cooter, ‘“Framing” the End of the Social History of Medicine’, in F. Huisman and J. H. Warner (eds), Locating Medical History: The Stories and Their Meanings (Baltimore: Johns Hopkins University Press, 2004), 309–37.
↵59 As early as 1973, two New Jersey scholars tried to imagine a society in which there was no longer a sick role for the sick: ‘Death or prolonged illness, destruction of vital relationships, loss of full human status: these are the costs of not having the sick role when it is needed. … The function of the sick role is to have the life, maintain the vital relationships, and insure the full human status of the sick person until he gets well or dies’ Miriam Siegler and Humphry Osmond, ‘The “Sick Role” Revisited’, Hastings Center Report, 1973, 1, 56.