Sudden unexpected death in epilepsy (SUDEP) is a syndrome where a person with epilepsy dies suddenly and no other cause of death is found. The question of informing patients and their families about SUDEP remains a problematic issue. The aim of this study is to explore whether Italian physicians interested in epilepsy believe that they should discuss SUDEP with patients and/or their families. A total of 315 questionnaire were distributed, of which 195 (61.9%) were returned. Seventeen respondents (8.76%) discussed SUDEP with all of their patients, 38 (19.59%) with the majority of patients, 120 (61.85%) with very few of their patients and 15 (7.73%) with none of their patients. No statistical differences among groups were found for gender, professional age (≤ 10 years; ≥ 11 years ≤ 20 years; ≥ 21 years ≤ 30 years; ≥ 31 years) and medical specialty (neurologists vs. others). Open questions offered insights into the physicians' problem of managing the negative emotions of patients/family and why the physicians decided to give information.

BackgroundThe issue of breaking bad news in assisted reproductive technology (ART) has been only partially explored by literature, and although some recommendations are available, specific guidelines are lacking. The present study aimed to explore the applicability of the oncologic SPIKES Protocol to the ART context.MethodsThirteen ART clinicians (7 gynecologists; 4 psychologists; 1 biologist; 1 obstetrician) completed the Critical Incidents Report (CIR) to describe the experience of delivering bad news in ART. The CIRs were first discussed with clinicians, then a focus group was created composed of 13 clinicians, one health communication expert and a patient to discuss the applicability of the six-step (SPIKES) Buckman Protocol to ART. The discussion was audiotaped, transcribed and analyzed with content analysis.ResultsThe SPIKES Protocol seems to fit ART consultations and participants found it practical and easy to understand. Some specificities were found for the ART context: the reiteration of bad news, the “patient” as a couple and the fact that ability to conceive is closely related to self-esteem, as well as to social and family identity. During the discussion of the SPIKES Protocol, participants highlighted the importance of: 1) providing a caring setting, by adding a reflection on the value of communication by phone; 2) exploring patients’ perceptions but also misinformation; 3) exploring patients’ desires and expectations, while balancing the need to be honest and clear; 4) applying Buckman’s suggestions for delivering information, and integrating clinical aspects with psychosocial ones; 5) managing and legitimizing patients’ emotions, in particular anger; 6) having a strategy for follow-up and supporting couples to make meaning of the ART experience.ConclusionThe proposal of a shared protocol for giving bad news in ART could be the starting point for training and experimental studies.

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Our findings suggest that the hidden curriculum has a strong cultural component. In our students' experience, the hidden curriculum conveyed a paternalistic model of physician-patient relationships. Some of the messages conveyed by the actual hidden curriculum may compromise the standards formally taught in medical schools about doctor-patient relationships. Organizational culture change and student empowerment could be fostered to counteract the negative effects of the hidden curriculum.