Discussion
a reduced fighting spirit, cancer, helplessness/hopelessness, anxiety
CANCER, ADVANCED CANCER
In the current study, we explored the relation between SDM and potential adverse patient outcomes (i.e., anxiety, tension, loss of fighting spirit, helplessness/hopelessness, and uncertainty). We found that SDM and multivariate short-term adverse outcomes were significantly related. More specifically, more SDM in the consultation was related to more tension and decisional uncertainty after the consultation. “Informing about the options” was the only SDM element found to be significantly related to adverse outcomes (i.e., to more helplessness/hopelessness and tension) after the consultation. These results imply SDM may be associated with negative emotions for some patients. Whether the patient consulted with an SDM-trained oncologist or not did not affect adverse outcomes. In addition, we did not find any relation with long-term adverse outcomes, suggesting that the found associations are transient.Our finding that SDM might not only be related to beneficial but also to adverse outcomes is in line with speculations and findings in the literature.It may be important to further reflect on the concept of “adverse outcomes.” In this study, we focused on outcomes related to patients’ emotional status, that is (a combination of) patients’ anxiety, tension, reduced fighting spirit, helplessness/hopelessness and decisional uncertainty. However, there may be various other outcomes playing a role in the potential burden of SDM for patients, for example, cognitive factors such as dissatisfaction with the decision and decisional conflict or relational outcomes between oncologist and patient, such as a potential decrease in patients’ trust in the oncologist, perceived empathy, or feeling of support by the oncologist. In addition, it is still unknown how potential adverse outcomes relate to and interact with each other. It might, for instance, be that decisional uncertainty would mediate the relationship between SDM and tension, which should be explored in further research. Lastly, we have included a reduced fighting spirit as one of the “adverse outcomes,” yet one could similarly argue that reduced fighting spirit, perhaps accompanied by a more accepting stance, actually reflects an adaptive response when facing incurable cancer. In line, a recent study showed that patients with low fighting spirit were more likely to have prognostic perceptions similar to that of their oncologist.Interestingly, our study showed no influence of patient role preferences on the relation between SDM and adverse outcomes; that is, whether a patient prefers an active v. a rather passive role in decision making does not influence experienced SDM burden as much as we expected. Nonetheless, it is of great importance that oncologists take into account their patients’ needs and wants when making a decision, also in regard to their preferred decisional role. Inherent to the principles of SDM, SDM should be regarded as means to an end and not be executed at any cost, as this would contradict the idea that patients’ preferences are accounted for.When considering the relations between separate elements of SDM and adverse outcomes, adequately informing patients on the available options and their pros and cons was found to be related to patients experiencing more tension and helplessness/hopefulness shortly after the consultation. It could be that the potentially challenging information on life expectancy, which is uncertain and in the case of advanced cancer often limited, plays a key role in this relationship. In fact, it might not be surprising that patients who have just learned that treatment can prolong their life with only an extra few months feel hopeless or tense. Especially since earlier research suggests that many patients with advanced cancer are not aware that chemotherapy is not intended to cure their cancer.Although we did find observed SDM to be related to adverse outcomes, we did not find a significant effect of SDM training on adverse outcomes in the short or long term. This means that we did not find either more or less adverse outcomes in the training condition compared with the control condition. Despite the fact that the training was not targeted at preventing adverse outcomes in patients, possibly trained oncologists still managed to perform SDM in a way that did not raise adverse outcomes as opposed to SDM performed by untrained oncologists. On the other hand, it might be that trained oncologists performed SDM more standardly, independent of patients’ context and circumstances, and—related—their emotional well-being. Either way, future SDM training programs should inform health care professionals that SDM might relate to negative emotions and provide them with tools on how to offer support in these situations. Further research should explore how patients experience burden and what might help them to reduce it to a minimum.