Balancing explicit with general information and realism with hope. Communication at the transition to palliative breast cancer care

Abstract

The transition to palliative (breast)cancer care is a stressful event. It is important to communicate such information with care for patients’ needs. Patients seem to have two distinct needs, the need to know and understand and the need to feel known and understood. Oncologists can respond to these needs by providing instrumental and affective communication, to handle feelings of uncertainty and anxiety this diagnosis evokes. However, when discussing the transition to palliative care oncologists face two main dilemmas. First, it is unclear whether patients prefer more or less explicit – prognostic – information. Second, how oncologist can provide hope while remaining realistic is still unclear. The primary aim of this thesis was to gather more knowledge on optimal communication strategies in these two dilemmas from a patient perspective. A second aim was to provide more insight into and evidence for the validity of scripted video-vignette studies including analogue patients to investigate communication. First, interviews with breast cancer survivors and healthy women were held. Participants varied in how explicit prognostic information they would prefer. Hope proved to have many faces. Realistic hope could be created, partly by reassuring patients that they would not be abandoned throughout their disease. Based on these results scripted video-vignettes of a bad news consultation were created in which the level of i) explicitness of prognostic information, and ii) reassurance about non-abandonment were systematically varied (high versus low). This allowed us to study the causal effects of these manipulated communication elements. Experts and lay people were involved in creating valid vignettes and the scripts were role-played by actors. Next, both breast cancer patients/survivors and healthy women viewed these videos while imagining themselves in the shoes of the video-patient (they acted as so-called ‘analogue patients’). In a systematic review we found that this is a valid approach to study the patient perspective on communication, taken into account described precautions. Preceding the experiment, participants’ background characteristics (including monitoring coping styleand communication preferences) were assessed and after each video anxiety, uncertainty, satisfaction and self-efficacy were measured. Multilevel regression analyses showed that the highly explicit/highly reassuring video yielded the most beneficial results. The less explicit/less reassuring video yielded the most negative results. Bonferroni post hoc tests revealed that these differences were significant (with a trend for anxiety). Explicitness and reassurance also influenced the outcomes positively independently of each other (although only reassurance decreased anxiety). Interestingly, however, was that high monitors benefited less than low monitors from mainly explicit information. Moreover, high monitors compared to low monitors had no greater preference for explicitness and reassurance. Although they felt more distressed following viewing the videos, both explicit and reassuring information yielded overall the best results for all monitoring scores. To conclude, our results indicate that explicit prognostic information seems beneficial for most – but not all – patients. Therefore, tailoring is necessary. Next, realistic hopemight be created by reassuring patients that they will not be abandoned. Last, the use of scripted video-vignette studies including analogue patients to study the patient perspective on communication seems valid.