The challenges of clinical relationships are magnified when curing is not an option, especially as the role expectations of American medicine were largely codified with acute or curable diseases in mind. Expectations are one’s thoughts about what should occur during an appointment or interaction (Bell, Kravitz, Thom, & Krupat, 2002). According to Talcott Parsons who first outlined the expected roles of physicians and patients (Parsons, 1951), the physician as the expert in medical knowledge is expected to diagnose and treat disease, maintaining clinical distance from the patient. The patient’s role is to give the physician information to facilitate diagnosis and to follow the physician’s instructions so that he or she may quickly return to normal levels of productive life (Hay, 2006). In the heady decades of medical discoveries and breakthroughs—from methotrexate to Salk’s polio vaccine to lung transplants—there was an expectation that medical knowledge could solve any problem (Fanu & Le, 1999), which itself reinforced Parsonian roles. The idea of the expert physician who wields the miracles of medicine on behalf of the compliant patient still seeps into clinical interactions; it is “part of the mythic world of the patient as well as the physician” (Kirmayer, 2000, p. 170).

While rheumatologists with the best technologies at their disposal have made enormous strides in lengthening life-spans, stabilizing disease, and improving quality of life, much of rheumatology consists of palliative care. The diseases tend to be chronic, painful, debilitating, and life-limiting so that even if patients follow physicians’ instructions precisely, disease will continue to haunt them and their futures. The lack of a cure challenges classic expectations of physician and patient roles, leaving rheumatologists and their patients to negotiate a relationship that maximizes patient well-being and quality of life over the long term.

There is also a second problem with the classic roles as outlined by Parsons: they have been undermined by a convergence of processes encouraging distrust. These processes include increased availability of medical information combined with the consumerism of neoliberal economic policies and the empowerment movement of advocacy groups. Increasingly towards the end of the twentieth century, patients were deemed responsible for gathering information and making their own health decisions (Giddens, 1991). This is a dramatic shift away from the Parsonian model in which the patient’s only job was to follow the physician’s directives.

Consumer advertising encouraged this neoliberal responsibility of the patient, while also reframing patient-consumers as responsible for providing information to the physician. In the United States, legal constraints on direct-to-consumer pharmaceutical advertising were relaxed so that by 1985 pharmaceutical companies could market their products directly to consumers in print ads using small print on risks associated with a medication (Ventola, 2011). In 1997 and again in 2004, the Federal Drug Administration further relaxed requirements, enabling pharmaceutical companies to market their drugs on broadcast television with minimal information on risks (Ventola, 2011). The advertisements, illustrating happy people living pain-free lives, regularly conclude that the consumer should “talk to your doctor to see if (brand name) is right for you.” In so doing, pharmaceutical advertisements simultaneously undermined the image of the physician-as-expert and made the patient responsible for gathering information to ensure that they received the “right” prescription (Dumit, 2012).

Advocacy groups likewise gained momentum during the 1980s and 1990s and increasingly emphasized that patients must advocate for their own right to health. That advocacy was primarily directed at health insurers, funding agencies, and after the passing of the Americans with Disabilities Act in 1990 , at employers (Heath, Rapp, & Taussig, 2007), but such activism required that patients argue on their own behalf, becoming empowered through knowledge acquisition. “Knowledge is power” was, by the early and mid-2000s, a common phrase on disease advocacy sites and patient-support media sites.

Over the same period that pharmaceutical companies exponentially increased their direct-to-consumer advertising framing patients as the ones who had to educate their physicians about medications, and advocacy groups framed patients as being responsible for “arming” themselves with knowledge, medical information became widely available online. In 1991, the world wide web was made publicly available, and by 1998, approximately 48 % of American households owned a computer and 26 % had access to the internet (National Science Board, 2000). That number too grew exponentially, so that by 2005, 66 % of American adults were using the internet (Fox & Rainie, 2014) and by 2006, 64 % were using the internet to search for health information (Fox, 2006). As early as 1999, Hardey could describe a world in which “the Internet forms the site of a new struggle over expertise in health that will transform the relationship between health professions and their clients” (1999, p. 820). Today the internet has become a key resource for patients, and it is increasingly used to self-diagnose, check, or even replace information from a physician (Fox & Duggan, 2013), but patients are not necessarily discussing that information with their physicians (Diaz et al., 2002; Hay et al., 2008).

The collusion of these three broader societal trends—direct-to-consumer pharmaceutical marketing, patient advocacy, and the availability of online health information—together reframed patients as responsible for educating themselves and their physicians about medications, advocating for themselves, and being the experts in their own healthcare. If one looks solely at these social trends, one could conclude that the physicians’ role has become one of gatekeeper to diagnostic tests and prescriptions listening to the demands of the patient-consumer, and the patient must now be the expert, responsible for their own well-being. In fact, what has happened is that role expectations are unpredictable, making doctor–patient communications particularly challenging.

In rheumatology, a handful of studies on expectations suggest that patients’ expectations are often unmet. In one study of patients who had established relationships with their physicians, one third of patients reported unmet expectations for their appointments (Rao, Weinberger, Anderson, & Kroenke, 2004). In another study of over 1000 patients, nearly 1/3 reported unmet health needs which were associated with poor health outcomes (Kjeken et al., 2006).

Given this, it is unsurprising that recommendations for rheumatologists include eliciting patient expectations at the outset of an appointment (Main, Buchbinder, Porcheret, & Foster, 2010). In our research, participating rheumatologists always began appointments with some version of the question, “What would you like to accomplish here today?”, thereby soliciting patients’ explicit wants or concerns, but role expectations are often unconscious notions of how an interaction should proceed and what responsibilities belong to whom. In the exit interviews, even though their explicit expectations had been solicited, it was not uncommon for patients to voice disappointment. Those disappointments often had less to do with explicit care or information received (cf. Rao et al., 2004), than with role expectations and concerns about trustworthiness. Patients want trusting relationships (e.g., Berrios-Rivera et al., 2006; Salt & Peden, 2011), but to demonstrate trust, caregivers must meet often unconscious expectations.

Based on our research on clinical interactions, some patients want a somewhat Parsonian doctor, an expert to make the decisions on their behalf, and the provider that welcomes patients as active decision-makers will have patients leave frustrated saying, “Who am I to decide? He’s the expert!” (Notice that even those that want a Parsonian-style doctor still reserve the very twenty-first century right to grumble about the physician). Other patients judge the quality of care based on health outcomes: one patient noted “I really need to wait and see if this medication works before I can say for sure”—in other words, her evaluation of the physician’s care would be based on her health outcome using a consumer logic. Most patients have expectations that fall somewhere along the continuum between these two extremes. Some are willing to take on a Parsonian patient role, but yearn for a non-Parsonian physician; as one patient put it, “You know, we have to be respectful of the doctor, because they are the doctors, but they aren’t necessarily respectful of their patients.” Some do not necessarily want to be partners, but they do want to be told all the relevant information, as one patient said, “He was just so condescending, very distant, as if I didn’t know anything about it. Doctors have to have more humanity when talking to patients. Don’t be dominant. The patient shouldn’t be made to feel subservient.” Other patients seem completely complacent in clinical interactions, accepting prescriptions and recommendations without question, only to double check online everything the physician says: “Well he wants me to go on something new. It’s still experimental, and he said they don’t know whether it’ll help or not, but we’re going to try it. I’m going to read up on it online before I start it though.” Healthcare providers in the twenty-first century have to be equally ready for patients who want them to be the experts or to include patients as partners in decision-making , and for every possible role in between (e.g., Street, Gordon, Ward, Krupat, & Kravitz, 2005). Patient’s expectations are wide-ranging, yet they are critical to meet because they have potential clinical consequences (Kravitz, 2001).

At this point, care providers might be tempted to throw up their hands in despair, and it is worth remembering that patients often feel the same way. The unpredictability of role expectations has made clinical interactions challenging, particularly given the structural constraints of clinical appointments.

The final challenge to smooth clinical communication is that patients have so much at stake. For patients, the significance of clinical appointments is heavy with patients’ hopes for answers and treatments. The insidiousness of rheumatological disorders like lupus or fibromyalgia or dermatomyositis, as for other chronic diseases, is that through pain and disability they undermine a person’s identity or core sense of self (cf. Charmaz, 1993; Murphy, 1987). Indeed, wait times for appointments can be particularly frustrating because they can be perceived as delays in treatment that then further delay the hope of “being able to be more myself” (Hay, 2010, p. 266).

For patients, illness is not simply a disease confined to their bodies, it spills over, staining everything it touches. In addition to pain and disability, rheumatological conditions undermine people’s ability to be productive. In societies like the US in which productivity is associated with value, not being able to be productive may exacerbate suffering (Hay, 2010). This increase in suffering through lack of productivity is evident as one patient opened her appointment with an uncontrolled rush of words denoting the ways her identity had been discombobulated by disease “My thing is—is that if anything will help—improve my—(0.1) my uh my—just my life quality-um:m I’m 38. I’m very active. I don’t want to be sittin’ around” (emphasis in original). Rheumatic conditions often cause worlds to unravel. It is unsurprising that helplessness is common in rheumatological disorders and has been associated with less physical functionality, more depression and mood disorders, and more pain in rheumatoid arthritis, fibromyalgia, osteoarthritis, and lupus (e.g., Nicassio, Schuman, Radojevic & Weisman, 1999; Nicassio, Wallston, Callahan, & Pincus, 1985; Tayer, Nicassio, Radojevic, & Krall, 1996). Depression is likewise common in rheumatic disorders like rheumatoid arthritis (17–39 %, Matcham, Rayner, Steer, & Hotopf, 2013; Withers, Moran, Nicassio, Weisman, & Karpouzas, 2014), lupus (30 %, Huang, Magder, & Petri, 2014), and scleroderma (10–23 %, Jewett, Razykov, Hudson, Baron, & Thombs, 2012). Even those who are not depressed are likely to experience distress with scleroderma (Newton, Thombs, & Groleau, 2012) and rheumatoid arthritis (Treharne, Kitas, Lyons, & Booth, 2005). Catastrophizing (ruminating about one’s condition) is common in rheumatic disorders and associated with helplessness, depression, sleeplessness, and pain (Edwards, Cahalan, Mensing, Smith, & Haythornthwaite, 2011).