Departing from a contemporary novel about a boy who is going to die from leukaemia, this article shows how the dimension of time can be seen as a morally relevant category that bridges both ‘dramatic’ issues, which constitute the dominant focus of bioethical decision making, and ‘undramatic’ issues, which characterize the lived experience of patients, relatives and health care workers. The moral task of comparing the various time dimensions of a given situation is explained as an act of ‘synchronizing’ the (...) clocks. Ethical sensitivity and competence are presented as core skills that allow a continuity of care in situations where dramatic issues seem to be resolved, but undramatic ones are still not addressed. A nine-step model of shared decision making is proposed as an approach to identifying critical junctures within an illness trajectory and synchronizing the clocks of the involved actors. (shrink)

Patients have the right to refuse their treatment; however, this refusal should be informed. We evaluated the quality of the informed refusal process in Iranian hospitals from patients' viewpoints. To this end, we developed a questionnaire that covered four key aspects of the informed refusal process including; information disclosure, voluntariness, comprehension, and provider-patient relationship. A total of 284 patients who refused their treatment from 12 teaching hospitals in the Isfahan Province, Iran, were recruited and surveyed to produce a convenience sample. (...) Patients' perceptions about the informed refusal process were scored and the mean scores of the four components were calculated. The findings showed that the practice of information disclosure was perceived to be moderate, however, comprehension, voluntariness and provider–patient relationship were perceived to be relatively good. We found that patients, who refused their care before any treatment had commenced, reported a lower quality of information disclosure and voluntariness. Patients informed by nurses and those who had not had a previous related admission, reported lower scores for comprehension and relationship. In conclusion, the process of obtaining informed refusal was relatively satisfactory except for levels of information disclosure. To improve current practices, Iranian patients need to be better informed about; different treatment options, consequences of treatment refusal, costs of not continuing treatment and follow-ups after refusal. Developing more informative refusal forms is needed. (shrink)