The evolution of uncertainty in second opinions about prostate cancer treatment

2.1 Participants and recruitment procedures

Patients with prostate cancer across the disease spectrum (clinically localized through metastatic) who requested a second opinion were purposefully recruited through two channels. First, at Maine Medical Partners—Urology (MMPU), an eight-physician urology practice in Portland, Maine, patients who either visited for a self-initiated second opinion or requested to be referred for a second opinion to a different institution. Second, patients visiting support groups run by the Maine Coalition to Fight Prostate Cancer (MCFPC), a statewide patient support and advocacy organization, were invited to participate if they had self-requested a second opinion in the past 2 years. Furthermore, patients were included of various ages, socio-economic backgrounds and types of second opinions (diagnostic and therapeutic), to capture variation in these characteristics with regard to uncertainty experience. Participants were rewarded a $50 gift card incentive. The Maine Medical Center Institutional Review Board exempted the study from review.

Eligible patients were informed about the study face-to-face or by telephone by either a patient navigator (MMPU) or by a support group moderator (MCFPC). Potential participants provided verbal initial consent to be contacted. The researcher next contacted patients by phone, providing additional information about the study, answering questions, requesting definitive consent and scheduling the interview. Recruitment and data acquisition stopped when three consecutive interviews did not yield any new information.

2.2 Data collection

In-depth, semi-structured telephone interviews were conducted and audio-recorded by an experienced interviewer (MH) with a background in psychology. The interview protocol is displayed in Table 1, and evolved primarily around motivations and experiences of the second opinion, and the experience of uncertainty in the second opinion process. Throughout the interview, any expressions related to experiencing or communicating about uncertainty were explored in-depth.

2.3 Analysis

All interviews were transcribed verbatim and analysed using MAXQDA12,22 following guidelines for qualitative research.23 During data acquisition, three interviews were read in-depth and discussed by three authors (MH, CG and PH; with backgrounds in psychology, public health, and medicine and bioethics, respectively) to allow revising of the protocol. Second, these authors independently coded and jointly discussed three other interviews to arrive at an initial coding scheme. Subsequently, two authors (CG and MH) coded all interviews independently. Codings were compared and discussed after each three consecutive interviews, with a third author (PH) present. The coding scheme was revised continuously, based on outcomes of the analysis. Initial codes were grouped per theme and then hierarchically organized. Throughout the analysis, all authors kept notes of broader themes emerging from the data. Finally, common themes related to second opinions and uncertainty were derived from clustering of the data. A fourth author (ES; background in psychology) critically reviewed general themes identified in the analysis.

3.1 How uncertainty influences patients to seek second opinions

3.2 Effects of second opinions on patients’ uncertainty

Seeking second opinions had variable effects on patients’ uncertainty. Although it reduced uncertainty for many patients, others reported that their uncertainties remained or even increased. The extent to which patients’ level of uncertainty was affected by the second opinion depended on how patients’ information needs or desire for decisional guidance was addressed, or the degree to which the physician providing the second opinion shared their level of uncertainty (see Table 2).

4.1 Adequacy of information

Uncertainty was frequently the result of patients’ perception that the information they received was incomplete or biased. They used the second opinion to obtain a better overview or validation of the initial doctor's recommendation. Patients’ information needs ranged widely: some expressed high needs and were comfortable acquiring as much information as possible, whereas others were not comfortable with too much information and felt overwhelmed by it. Patients may have different coping styles in managing threatening information. Low information seekers do not actively seek information or even avoid being confronted with it.24 High information seekers may actively aim to reduce their anxiety by seeking more information, even though that information may in some cases yield even more uncertainty.25 Patients with high information needs in the present study expressed the belief that second opinions should be routinely obtained. Some patients appeared to have more resources to actually satisfy their high information needs, which allowed them to “buy more certainty”—as second opinions can sometimes be costly—by obtaining more information from different sources. This is an important avenue for future research, as it suggests that people with lesser financial resources but high information needs might be forced to tolerate more uncertainty than people with greater resources—potentially exacerbating health disparities.

Proper timing of the information may be crucial to prevent patients from feeling uncertain and overwhelmed in processing the highly complex information provided to them directly after diagnosis. Indeed, several patients in the present study reported seeking a second opinion to buy more time to get in the right state of mind to process all the information. This suggests that the need for second opinions might be lessened if physicians could more proactively assess patients’ degree of emotional distress following disclosure of the cancer diagnosis, and adjust the timing and amount of subsequent information accordingly.

4.2 Adequacy of decisional support

The results further suggest that even when patients receive sufficient information, they frequently experience uncertainty because of inadequate decisional support. Information about treatment options produced uncertainty due to its volume, complexity, inconsistency and unpredictability, which patients felt they had to manage on their own. These patients sought a second opinion to resolve the feeling of being overwhelmed by having to make difficult choices by themselves. This feeling can be exacerbated when physicians do not implement truly shared decision making (SDM),26 which is the ideal model for the preference-sensitive medical decisions patients are confronted with in prostate cancer. Conducting proper SDM involves introducing choice, explaining the available treatment options, helping patients explore their values and preferences and coming to a decision.5, 27 By engaging in SDM, clinicians could reduce patients’ therapeutic uncertainty. However, inadequate use of SDM could increase, rather than decrease, uncertainty. Physicians need to provide sufficient guidance to help patients make sense of the different equivalent treatment options and their associated (dis)advantages.28 Unfortunately, in current prostate cancer practice, SDM may sometimes be misinterpreted as a full, unilateral delegation of all decisional responsibility to the patient, rather than a mutual sharing of responsibility driven by patients’ preferred level of involvement in decision making.8 The organization of prostate cancer care and similar “preference-sensitive” conditions—with individual specialists informing the patient only about their “own” treatment option (eg urologists discussing surgery exclusively and not radiation therapy)—may actually exacerbate this problem. Moreover, a lack of coordination of information between specialists could contribute to patients’ perceptions of receiving biased information from individual physicians. These perceptions can be accurate, furthermore, as physicians may, more or less consciously or unconsciously,29 nudge patients towards a preferred treatment direction.8

Multidisciplinary consultative care could reduce patients’ uncertainty, by facilitating a more collaborative approach towards decision making and a reduction in perceptions of bias.7, 30 Indeed, our data suggest that the very existence of the collaboration, independent of the information that was exchanged, may have an uncertainty-reducing effect. Increasingly, nurse navigators have been appointed to assist patients around treatment decision making.31 Their involvement may provide critical decisional support, although they cannot fully replace the physicians’ role in guiding patients through the decision-making process,32 and there remains a high need for different physicians to efficiently communicate with one other.

4.3 Unshared uncertainty

The findings on patients’ need to feel a shared level of uncertainty with their physicians may be an extension of Epstein & Street's notion of the “shared mind”33—the process by which two or more people create new ideas through the sharing of thoughts, feelings, perceptions, meanings and intentions. Our findings illustrate the importance of shared mind regarding patients’ level and perceptions of uncertainty. Lack of shared mind on uncertainty would drive patients to seek other opinions until they arrive at a shared level of uncertainty with their physician. This finding aligns with earlier theoretical work emphasizing how uncertainty residing in the mind of only the physician or the patient may cause conflict or distrust.15 Enhancing a state of “shared mind”—where the locus of uncertainty lies in the mind of both the physician and patient—may reduce patients’ need to seek multiple opinions. Encouraging physicians to be more receptive to discussions about uncertainty could promote this shared mind and foster trusting physician-patient relationships.

This may be especially important for patients who have a high a need for uncertainty as a source of hope. In our study, this phenomenon was observed mainly among patients with advanced prostate cancer, who reported a desire to preserve a sense of uncertainty about the future, for example about the possibility of new treatment options. This strategy of maintaining uncertainty has been described earlier, for example in Brasher's Uncertainty Management Theory and Mishel's theory of uncertainty in chronic illness.34, 35 Patients who feel unsupported in their need to retain hope might be compelled to seek additional opinions elsewhere. Greater awareness of patients’ perceptions and needs regarding uncertainty may enable physicians to better meet these needs—and potentially reduce second opinions.36, 37

4.4 Recommendations

The recent increase in patient-initiated second opinions increases financial burden on the health-care system.13 The present results additionally show that because of their potentially diverse effects on patients’ well-being, they should be used judiciously. Second opinions may be a useful tool for some but not all patients, and they should not be viewed as a solution to current limitations in the organization of care. Some sources of patients’ uncertainty could be addressed within the initial consultation, obviating the need for a second opinion. However, our results suggest that some care delivery processes are better than others in meeting patients’ needs for certainty and uncertainty. For example, offering a multidisciplinary team-based approach to guide patients through the treatment decision may be better than having patients independently visit multiple specialists. Clinicians need to be trained in SDM to enable them to share decisional responsibility with patients, instead of delegating it completely, and to assess patients’ preferred involvement in decision making. Both clinicians and patients could also benefit from existing tools to promote decision making, such as question prompt sheets or other decision aids.38, 39 Both multidisciplinary collaboration and enhanced SDM may result in a significant reduction in uncertainty experienced by patients. Similarly, it may be better to tailor the timing of treatment discussions to individual patients’ preferences and abilities, rather to treat all patients in the same manner. These care processes, however, may be challenging to implement and require substantial changes in the organization of prostate cancer care.

Yet some of the problems that motivate patients to seek second opinions may not be addressable in any other way. Even with optimal information provision, uncertainties will always remain not only in prostate cancer care, but health care in general.40 Some of these uncertainties might be reducible, and this possibility—as well as the inherent challenge in determining the extent to which any given uncertainty is reducible—will motivate people to seek second opinions. These possibilities arguably justify the provision of second opinions by the health-care system. And yet many uncertainties in health care are irreducible, and both patients and physicians must ultimately reach a point at which they must stop seeking more information.35 At this point, the challenging task for physicians is to focus less on information per se and more on how to assist patients in managing irreducible uncertainty. The problem of second opinions in oncology care thus ultimately comes down to the problem of helping people tolerate uncertainty.15 Determining exactly how to address this problem is the critical future challenge.