The main findings of this study were that most of the respondents preferred to make decisions by themselves or follow the advice of their doctors, while family members did not participate much in the decision-making process. Participants’ surgical decision-making was hindered by diagnostic uncertainty, fears of surgeries and postoperative complications, and wardmate examples, but facilitated by fears of the prognosis of thyroid cancer, pregnancy, and support of colleagues, doctors, and wardmates. Some respondents regretted their surgeries due to their insufficient preoperative consideration of the necessity and serious postoperative complications, which left their family members also deeply remorseful of the perceived negligence of their responsibilities.
Most of participants made their decisions autonomously and trusted their physicians, which was different from previous studies [31, 32]. This might have resulted from occupational factors that our interviewees had acquaintances in medical fields and trusted their doctors more than others. Several studies showed that trust in doctors influences patient decision-making [33–36]. For instance, patients' trust in doctors can promote patients' participation in their own health care [34], and patients who trust medical staff are more likely to reach a consensus on decision-making with medical staff. In contrast, patients' distrust of physicians can limit their sources of reliable information and, ultimately, patient decision-making participation [35].
The finding that physicians were more involved in surgical decision making than family members was inconsistent with some previous studies [37–39]. There were several possible explanations for this. First, compared to surgeons, most family members could not give professional advice because of their ignorance of relevant medical knowledge. Second, parents might have stereotypes about their children's occupations, and would think their children are likely to make more informed medical decisions than themselves. Stereotype has high stability once formed and often hinders people from accepting new things, and easily leads to prejudice and role perception bias [40].
For Chinese people, doctor-patient-family relationship may be more appropriate than that in the medical decision-making process [41]. Contrarily, family participation in medical decision-making, whether through active participation or just as a more passive observer, can help the decision-making process and reduce the psychological pressure perceived by patients [42]. This is reflected in three respondents’ claims that their parents could have felt more regretful if they had been involved in the decision-making process.
Difficulties in making the surgical decisions stemmed from the lack of evidence- based information, fears of prognosis of thyroid cancer, surgeries, and postoperative complications. Some participants lack evidence-based guidance on how to consider continued long-term observation without surgeries in the context of their personal values and long-term goals. The occupational stereotype is that medical staff is knowledgeable enough to make the right decisions [43, 44]. However, they had not been equipped with the expertise of PTMC to make the right decisions. Rather than making decisions either by either patients or doctors, shared decision-making (SDM) is preferred as an interactive process in which the patient and clinician aim to make decisions together, based on shared information and the best available evidence [45, 46]. SDM has been found to reduce fear and depression [47], improve the quality of life [48], increase patient and treatment satisfaction [49], decrease overuse of treatment regimens and unnecessary changes in practice [50], and have led to relatively widespread incorporation of SDM into health policy [51]. Obviously, the surgical decisions were not jointly made by the participants and doctors in this study, and thus caused some difficulty for the participants.
Regrets in the surgery decisions were consistent with previous studies. The three participants who experienced complications such as hypoparathyroidism, limb shaking, fatigue, and psychological symptoms after the surgeries, regretted their surgical decisions, and had poor quality of life afterwards. They attributed their regret to their poor decisions due to insufficient information and hasty actions. A systematic review of surgical decision-making regrets showed that the average incidence of regret was 14.4%, and the incidence of regret in tumor patients (18.1%) was generally higher than that in non-tumor/benign indication patients (10.0%) [52]. Factors related to regret include the basic patient characteristics, types of operation, operation time, postoperative symptoms, quality of life, quality of decision-making dialogue, and the use of decision aids. Among these factors, the most common factor associated with regret was postoperative symptoms/quality of life. Previous studies have also shown that cancer patients tend to overestimate the potential benefits of surgery, often believing that surgery is likely to cure them, even though this is not always the case [53, 54]. Overestimation of the benefits of surgery may increase regret experienced by cancer patients [55, 56].
Methodological limitations need to be considered when interpreting the findings of this study. First, selective memories and socially desirability could have influenced the narratives of the interviewees. Second, the small sample of
interviewees who had been treated in one hospital were not representative of patients with thyroid nodules in other settings. The views and attitudes towards decision-making experience elicited in this study may not cover the whole range of experiences and views of patients with thyroid nodules. Future studies may further explore views of healthcare professionals and patient family members to better understand the decision-making of medical staff with thyroid nodules.
This study is one of the few qualitative studies to explore surgical decision-making experiences and perceptions of medical staff with thyroid nodules in China. Different from ordinary patients, medical staff with thyroid nodules have more acquaintances in the medical field and were proactive and independent in the surgical decision-making process with their trust in doctors. However, due to the stereotypes that medical staff are knowledgeable and capable of making the right decisions, family members are less involved in decision-making, while health providers ignore their needs of information and psychological support, resulting in regretful and painful postoperative experience. For making a surgical decision about thyroid nodules in medical staff, we hereby recommend that healthcare providers offer more professional and evidence-based treatment advice and psychological support, and that patients, family members, and doctors be encouraged to work together in the SDM approach. Healthcare providers should be mindful of other factors related to decision regrets to minimize the impact of operative complications. If possible, artificial intelligence may be resorted to facilitate surgical decision-making.