Second opinion opportunity declined: patient typology and experiences regarding the decision-making process preceding elective surgeries in Germany

This paper reports on our exploration of the decision-making process from the patients’ perspective, in their deliberations about undergoing an elective surgery, and utilizing their option to obtain a second opinion. We conducted in-depth interviews and used a framework analysis [20, 21]. The overall objective of framework analysis is to identify, describe, and interpret key patterns within and across cases of the phenomenon of interest, and its component themes [22]. Establishing such a typology could help researchers and stakeholders in the health system to understand the factors influencing patients’ medical decision making, and therefore we used framework analysis to create a typology from patients’ perspectives.

This study was approved by the Ethics Committee of the Brandenburg Medical School Theodor Fontane (E-01-20190529). Written consent was obtained after participants were given the opportunity to ask clarifying questions. Patients were not involved in designing this study.

Participants were selected using purposive sampling [23]. We included patients who had undergone elective tonsillectomy (TE), hysterectomy (HE), or shoulder arthroscopy (SA) for non-malignant underlying diseases. In alignment with the eligibility criteria for the SOD [4, 8], patients with malignant diseases were excluded because multidisciplinary oncological care services (e.g., tumor conferences) are widely implemented in Germany [24]. Patients with a tonsillotomy were excluded because this procedure is predominantly performed on underage children and children are excluded from the sample. Although the inclusion criteria for this study were based on the directive, it was not a criterion that the indication for surgery was given when the directive was already in force.

Patients were recruited via AOK Nordost, a statutory health insurer operating in the German federal states of Berlin, Brandenburg, and Mecklenburg-Western Pomerania, and covering approximately 1.76 million insured citizens. In October and November 2020, insured persons of AOK Nordost who received a TE/TT (N = 2288), HE (N = 2934) or SA (N = 3640) in 2018, 2019 and 2020 were contacted. Eligible individuals received an invitation by post in October 2020 from AOK Nordost to participate in the interviews, with follow-up postal contact after 2 weeks. At the same time as being invited to the interview, people were asked to participate in a questionnaire survey. Patients who desired to participate in an interview had the option of contacting study researchers by phone or via a digital contact form. AOK Nordost did not receive notices of participation, nor any information provided by the patients in the interviews. Patients were offered €20.00 as an incentive for their participation in the study. Socio-demographic data was requested in a telephone conversation even before the interview was conducted to ensure that the sample was as heterogeneous as possible. The interview sample have been selected according to the maximum variation criterion [25] and the following aspects were addressed: indication, age, sex, educational level, settlement pattern.

A preliminary semi-structured interview guide was drafted by a multiprofessional team (SM, DB, SvP). The semi-structured interview guide consisted of open-ended questions that explored how and when patients made their decision about surgery, what sources of information they used, who influenced or assisted with their decision, whether they sought a second opinion, and their reasons for that decision. Sample interview questions included: “Can you please describe how you made the decision to have a surgery?”, “Would you please tell me when you made the decision to have your surgery?”, “Have you sought a second opinion, and if so, why?” (please refer to Supplementary material 2 interview guide). In addition, socio-demographic data were collected, including gender, age, settlement pattern (cities, towns, suburbs, and rural areas), educational level, and occupational qualification. To ensure clarity and relevance of the questions, we conducted a pilot test of the interview guide with help from five eligible patients recruited from clinics and outpatient physicians in the study’s catchment area. We adapted the study protocol [8] in view of severe restrictions imposed by the Covid-19 pandemic; accordingly, all interviews were conducted via telephone during October to December 2020. The interviews were recorded and transcribed verbatim. Data collection continued until no substantially new findings emerged and saturation of content was reached. Saturation of content is defined as code saturation, when no additional issues are identified and meaning saturation, when no further dimensions, nuances, or insights of issues can be found [26].

Data collection and analysis based on Framework analysis [18, 19] were conducted with primary responsibility assigned to one researcher (SM) and with the assistance of the research team (DB, FM). Further information on data analysis is illustrated in Fig. 1. The transcriptions were made by a student assistant according to transcription rules [27]. After transcription of the audio material, the analysis began with a familiarization with the interviews, whereupon the interviews were coded (SM, DB, FM). Field notes consisted of a short summary of the interviews. The field notes were used to ensure better comprehensibility of the interview situation. The field notes themselves were not included in the analysis. Recurring main themes were noted and collated into groups of similar themes (SM, DB, FM). These groups were later organized into a draft theoretical framework or index, which was refined upon discussion among the team members (SM, DB, FM). We used thematic coding to develop our decision-making typology, focusing on key elements of participants’ experiences and major factors influencing a decision in favor of undergoing a surgery, and the role of seeking a second opinion in opting for surgery (SM, DB, FM). We systematically applied the analytical framework to every interview (SM). In this study phase, the themes were revised or merged, with formation of new categories as necessary. After revision, we summarized the data in thematic charts in an Excel spreadsheet (SM). In the final phase, all team members met to map, interpret, and make a synthesis of the data through reviewing the charts. We created a schematic diagram representing a typology of the experienced decision-making process in the context of seeking a second opinion, with grouping of similar themes based on the best fit to the data. We used MAXQDA software (Verbi GmbH) for our initial thematic coding, followed by Microsoft Excel (2021, Version 16.55) for our charting data. This manuscript has been compiled in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) [28] (please refer to Supplementary Material 3). For the presentation of the results, we have selected representative quotes of the discussion transcript for translation into English and inclusion in the text.

Initially, we captured the timeline of the decision-making process in order to enable a detailed description of the process. Then, the potentially relevant motivational aspects that influenced seeking a second opinion were reported by the patients.

The patients were asked whether they had sought a second opinion during their decision-making process, and were offered the opportunity to elaborate upon their answer. In sum, 54 of 62 (87%) respondents had not sought a second opinion. We identified three overarching motivational dimensions that explained why people did or did not seek a second opinion: (1) patient-physician relationship; (2) patient intrinsic aspects; and (3) adverse experiences in the health care sector. These are elaborated upon below, and we present further factors that emerged as influencing decision-making for surgery.

Although not all patients in this study population had the right to seek a second opinion according to the directive, because the directive had not yet been implemented for all participants at the time of receiving the indication, the majority of participants appreciated the opportunity to seek a second opinion.

“That’s where I would have immediately gone for a second opinion if my doctor or my gynaecologist had said, “Go there, please [to a second opinion physician].” Then I would have immediately sought a second opinion. Immediately.” (MaG213_HE, Pos. 16).

Eight of 62 (13%) of participants obtained a second opinion. Of eight participants who sought a second opinion, five lived in towns/suburbs (8%) and three in large cities (5%). None of the 62 participants from rural areas sought a second opinion. Three interviewees changed their primary physicians in the course of their care, and five interviewees remained under treatment by the same physician who had given the indication, after having obtained a second opinion. The three patients who changed doctors beforehand were all dissatisfied with their treatment due to what they felt was inadequate communication.

Our analysis of the interviews revealed further factors influencing decision-making for surgery, which were not directly mentioned in the context of seeking a second opinion. The participants reported that opinions and experiences of family and friends bore a substantial influence on their decision to undergo elective surgery. Various topics were discussed with other people, such as the possible impact of the surgery or the choice of hospital or surgeon.

“Nowadays, before making a decision, people not only inform themselves about the doctor’s opinion, but also on the internet and get experiences from their friends/family/acquaintances. So that’s what I’ve already done.” (MäG210_HE, pos. 73).

Furthermore, the Internet was stated by the participants as a source of information that influenced their decision. Among the different types of websites that were consulted, were clinic websites, general information health homepages, as well as forums reporting personal experiences.

“Well, yes, I looked online. A bit of general information on the subject, “What can I expect of such a surgery?”, and also a few ratings and testimonials from other people, whom I didn’t know personally. So when I think about it again, it had already influenced my decision.” (MaG240_TE, Pos. 32).

Figure 2 summarises the category system that describes the different motivational factors in the decision-making process of patients who had and had not sought a second opinion.

In the context of decision-making, we examined the temporal sequence from diagnosis to surgery, and were able to identify inductively the three time periods in which patients made their decision for or against surgery. For creating a typology, we assigned the patients to the three periods as described above: (1) the ‘immediate decision-making’, (2) the ‘more time to reach a decision-phase’, and (3) the ‘delay the decision for a long time-phase’. We then converted the motivational aspects of seeking a second opinion and the aspects influencing decision-making into variables. In order to enable a more reliable analysis, the category ‘Adverse experiences of healthcare’ was summarised by the composite of its subcategories. As a result, the three periods as described above and eight influencing factors were included in subsequent analysis, and the extent of their occurrence in the three typology groups was examined. Within the framework of the analysis, we were able to identify three patterns of patient types based on the three different time-points or phases when decisions were typically made. For one decision type, where the decision was made immediately, we could identify two subtypes (please see the matrix in Fig. 3). In the following we would like to illustrate the types with selected quotations.

This type makes the decision to undergo a surgery immediately. Type 1a is characterised by having great trust in the physician and feeling thoroughly informed.

“The guy (the doctor) knows what he’s doing. At that point I didn’t think about a second opinion, I trusted him” (MaG219_SA, Pos. 23).

“Honestly, no. The information I’d gotten there was enough for me, actually. I had heard what I wanted to hear and well, I wanted to get it going. So, it was pretty clear for me at that point that I would do it (the surgery).” (MaG237_TE, Pos. 28).

Patients associated with this type preferred surgery before indication.

“Then I had already decided that it had to be done. That there was no alternative for me. Even before the doctor had brought up the surgery.” (MaG207_SA, Pos. 40).

This type has a high level of suffering but is confident in decision-making.

“Well, I couldn’t even raise my arm any more, and had no strength besides. I was suffering so much. And then I didn’t hesitate at all and said, “OK, then it has to be done, what’s the point of getting a second opinion?” (MäG220_SA, Pos. 48).

Prior experiences in the health system did not influence this type’s decision to undergo a surgery. The probability that this type would seek a second opinion is low. In this group, one person (5%) has sought a second opinion.

This type also immediately decides to undergo a surgery. In contrast, this decision type is characterised by not feeling themselves sufficiently infomed, but still having a great deal of trust in the physician.

“I had no choice […]. Then he tells you all the things that could happen, and that there’s no other decision. If you want to live, for the kids and all that, don’t want to take the risk, then it can’t go any other way. You’ve got to trust the doctors and then you’ve got nothing else.” (MaG228_HE, Pos. 26).

“Yes, I didn’t have a lot of time then. Well, I’d felt that I was completely abandoned to deal with everything. That I couldn’t make a decision at peace because I hadn’t been informed. I definitely felt that I was missing information and I just felt bad. Yes. And then to put your entire trust on the doctor again, that’s a pretty difficult thing.” (MaG234_HE, Pos. 14).

This type also had a high level of suffering but did not consider surgery before the indication was made.

“But I was in such awful pain that I couldn’t think things through for so long, because I just wanted to get clear of this situation with the strong decline, you know? And to be able to do sports again, and yeah. And then I decided to have the surgery. But as I said, it was such a shock for me, you know? And I thought: ‚That‘s pretty strange, that nobody properly explained all of this before.” (MaG234_HE, Pos. 4).

“Yes, um, my age was decisive, actually, and because of my age, it was explained to me that this would be a prophylactic opportunity to prevent, uh, possible cancer. Actually, that convinced me because, well, there was no need to absolutely keep one of my sexual organs. I’d never thought about a surgery before the doctor recommended it.” (MaG222_HE, Pos. 4).

The prior experiences of this type in the health system did not influence the decision to undergo a surgery. The probability that these patients may regret the operation is believed to be comparatively high.

“I think that that was the biggest mistake I’ve ever made. I absolutely regret it.” (MaG228_HE, Pos. 60.

The probability that this type would seek a second opinion is low. No one in this group has sought a second opinion.

This type is characterised having a great of trust in the physician.

“I definitely have a trusting relationship. Because before I’d already had complaints and could come any time. She always took time. I think that’s really good.” (MaG217_HE, Pos. 21).

However, this type does not feel sufficiently informed by the physician.

“Nah, no one told me anything (about treatment possibilities or the surgery). In general I didn’t feel so well informed.” (MaG208_TE, Pos. 16).

The pressure of suffering was moderate. This type had also considered surgery before the indication was made, and was quite confident in their decision-making. This type researches online and shares information with others.

“Basically, I make a decision for me, but I talked to my parents about it as well. Asked them if they also would see it the same way, having experienced what they’d experienced. That helped me with the decision […]. I googled how it works and what dangers might possibly arise. Those weren’t clear for me, from the doctor’s explanation. But it didn’t scare me away, in any case.” (MaG229_TE, Pos. 26–32).

The probability of this type seeking a second opinion was comparatively medium. In this group, three people (13%) sought a second opinion. Adverse experiences in the healthcare system, such as the prospect of long waiting times, discourage these patients from seeking a second opinion.

This decision type is characterised by a lack of trust in the physician and feeling not sufficiently informed.

“Nah, I honestly don’t feel well-taken-care-of […]. And I thought, like: Well, OK, she’s nearby, I can get there quickly, I’ll just stay there. Well, nah, I don’t particularly trust them.” (MaG221_HE, Pos. 35).

“I don’t make it easy for myself [getting the surgery]. Well, I weigh the advantages and disadvantages, and try as much as I can to inform myself about the possible risks, what could then happen to me on the way if I did decide to do it, what kinds of possibilities and options are available, and what difficulties and other hindrances could also happen to someone. Well, I didn’t get to know all of that properly from the doctor.” (MaG246_TE, Pos. 39).

The pressure of suffering was not high, and this type had not considered surgery before indication. However, this type is uncertain, wants to avoid the surgery, and searches for information elsewhere.

“When you hear ‘surgery’ for the first time, you don’t jump immediately at the opportunity, because you just don’t happily allow someone to go snipping around on you. At that point you’re absolutely uncertain. And for that reason I really wanted to hear what others were saying about it.” (MaG233_HE, Pos. 28).

This type is influenced by their earlier adverse experiences with medical care. We expect that there is a higher probability that individuals of this type will seek a second opinion. In this group, four people (27%) sought a second opinion.

To the best of our knowledge, we have performed a qualitative framework analysis and derived a patient typology of patients who have undergone an elective surgery in Germany. The qualitative interviews allowed for obtaining an in-depth understanding of the experiences and motivational factors in seeking a second opinion or not, although it should be noted that the sample size is relatively large for a qualitative study. However, there are certain limitations to our study. The results might be subject to a selection bias because only one health insurance company was utilized to recruit eligible individuals. On average, insurants of AOK Nordost have a lower level of education and lower socioeconomic status than the general population [45], as is reflected in the demographic characteristics of participants to our study. There may be a greater incidence of negative prior experiences of the health care system, because patients from rural areas have frequently been faced with a shortage of specialists. However, it should be noted that half of the respondents were from a city with over a million inhabitants. Furthermore, the sample was very heterogeneous and with different indications (TE, HE, SA). Furthermore, consistent with the segment of the population served by our project partner, the Health Insurance Company AOK Nordost, participants with a high education are underrepresented in our study. This might have an impact on the results. Finally, the specific type of elective surgeries under consideration were associated with underlying conditions and symptoms that typically represent a considerable burden to patient well-being and interfere with daily life over prolonged periods of time. Additionally, owing to the study design, we were unable to recruit any patients who had received an indication for surgery, but declined to undergo the procedure (with or without seeking a second opinion). Nevertheless, the indications investigated here are generally relevant to SOD for Germany. We concede that the decision typology was not established in relation with personality characteristics, which may have had an independent influence on decision-making behaviour. With this in mind, further research is necessary, whereby the directive is currently being evaluated [46].

The typology presented here is a first theoretical approach that focuses on the decision-making behaviour, and respectively the use of second opinions to patients who are facing surgery. The results are currently not yet validated by quantitative methods and should be investigated in further studies. In this context, it would then be conceivable to develop a tool that can identify the need for second opinions. It is conceivable that the likelihood of seeking a second opinion differs for elective surgery that does not result in prolonged pain or restrictions on participation in daily life. For example, breast reconstruction. If the pressure of suffering is not so high, then the need for information and the handling of the decision-making process may be different. Further research is needed to find out whether the decision-making process differs. Additional studies with patients who do and do not undergo surgery after obtaining a second opinion would be needed to apply the typology to these groups. A further recommendation could also be that insurance companies code consultations for identification of second opinions to support future understanding. As the coding is done by the physicians, they also need to be instructed accordingly.

Further research should also focus on the conflict that patients face when considering whether or not to consult another physician, as this situation could potentially be conflictual for patients, due to fear of causing offense. Research should continue to explore how perceptions of previous negative health care experiences and information needs are associated.