There is evidence that a participatory doctor–patient consultation style (patient centered and shared decisions) may improve patient outcomes. A 2008 systematic review of 11 randomized controlled trials comparing shared and non-shared decision-making interventions found that: five trials showed no differences, one trial showed no short-term effects but positive long-term effects, and five trials reported a positive effect of shared decision-making on outcome measures [18]. There is also evidence that self-management improves outcomes of patients with chronic disorders [19, 20], and that concordance between the patient’s expectations and the doctors’ beliefs on care is a determinant of patient trust and satisfaction [21, 22]. Hence, the importance of gaining insight into the patients’ preferred role in clinical decision-making.

The association between the patients’ preferred model of doctor–patient relations on one hand, and disease severity, education, age, and gender, on the other, is supported by the findings of studies conducted over a wide period of time and using different types of instruments. Still, stepwise regressions have indicated that disease severity and demographic variables accounted for only 15 [5], 19 [7], and 25 % [23] of the variance in patient preferences for participation in clinical decisions. Obviously, patients vary in their preferences and the same patient may have different expectations at different encounters with doctors. Therefore, direct enquiry is the only way a physician can gain insight into patient preferences for information and involvement in clinical decisions. Gaining insight into, and responding to, patients’ preferences should be viewed as a basic clinical skill.

There is considerable variability in communication styles among doctors; many of them underestimate [24] or misunderstand [25] a patient’s desire for information, particularly among less educated and minority patients. The claim has been made that doctors have difficulty abiding by norms of disclosure in situations of substantial uncertainty. They are concerned that acknowledging their uncertainty would undermine patient trust and create confusion and anxiety [26]. Other authors have suggested that shared decision-making is appropriate to situations of uncertainty where two or more clinically reasonable alternatives exist; however, when there is a single realistic choice, patient and physician may exchange information, but patients cannot be empowered to make choices that do not exist [27].

The following steps may be useful in gaining insight into patient expectations for health-related information and involvement in care-management decisions. The first one is the doctor’s summary of the medical problem, e.g., “I understand that you have had a sore throat, cough and runny nose for the last 2 days. Is this correct?” Second, in case this is not obvious, the patient’s expectations and preferences about his/her involvement in the decision-making process must be made clear by asking the patient “What do you think is wrong?” or “What do you think should be done?” If the patient responds, “Well—you are the doctor, you tell me!” the doctor may persist by saying, “Of course I shall advise you. However, it is very important for me to know first what you think,” or “Before I answer your questions, it would help me if you told me what you think about your disease,” or if the patient has a chronic disorder “…what you already know about your disease.”

The purpose of these statements is to not only elucidate a patient’s expectations or insight into his/her disease but also to express a willingness to answer questions to meet the patient’s needs for information. Patients may respond to the doctor’s prompt by expressing their concern over possibly having a serious disease “I hope that it is a passing flu; but I am concerned about the possibility of pneumonia.” In such cases, the doctor should accept the concern as legitimate although add other possible diagnoses. Already at this stage, even before there is a definite diagnosis, the conversation may provide the doctor with insight into the patient’s need for information after the diagnosis is established. Other patients may respond to the doctor’s prompt by expressing a total lack of knowledge “I don’t have the slightest idea what it could be.” In such cases, doctors may try to elicit the patient’s preference for information or involvement in treatment with a direct question such as: “Do you want me to tell you what I think about your disease, or what I think you should do about it?”

Finally, the doctor may present management options and discuss pros and cons, agree with the patient on his/her management and follow-up and, if appropriate, involve the patient and his/her family in self-care .

To sum up: gaining insight into the needs of patients for health-related information and for involvement in decision-making is important because meeting their expectations may improve their satisfaction and probably also, their outcomes. The vast majority of patients declare that they wish to be informed about their illness; however, there is considerable variability in their preferences for participation in decision-making, and some patients favor a passive role and the avoidance of health-related information.

These findings raise three types of uncertainties. First, the various dimensions of patient expectations from doctors (Table 6.1) are still in need of study. Second, it is uncertain whether doctors should adhere to a communication style of shared decision-making even if a patient appears to belong to the small minority who would prefer a completely passive role [28]. On one hand, there is evidence that informed patients are more likely to make wiser decisions, comply with treatment and participate in self-care . On the other hand, respect of patient autonomy requires that doctors honor a patient’s preferences even if these may lead to suboptimal care.

Third, few patients adequately understand their options and it is uncertain whether physicians can communicate probabilistic information about treatment outcomes to patients who wish to participate in decision-making. On one hand, a 2013 review of the literature indicated that patients who had been exposed to decision-making aids had more knowledge about treatment options, experienced less decisional conflict and were less likely to choose invasive treatment [29]. On the other hand, there is evidence that even the choices of well-educated subjects may be influenced by the framing and sequence of the presented information [30–32], and that doctors may have difficulty understanding health statistics [33]. The optimal ways of communicating health-related information to patients are still in need of study and development.