In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony Giddens’ (...) description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While (...) conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically “non-actionable,” we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients’ comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient’s situation and the underlying considerations shaping health care professionals’ choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person. (shrink)

The practical goal of preventing premature death seems uncontroversial. But the term ‘premature death’ is vague with several, sometimes conflicting definitions. This ambiguity results in several conceptions with which not all will agree. Moreover, the normative rationale behind the goal of preventing premature deaths is masked by the operational definition of existing measures. In this article, we argue that ‘premature death’ should be recognized as a normative concept. We propose that normative theories should be used to justify measures of premature (...) death to provide them with normative validity and public legitimacy. (shrink)

Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that (...) moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. (shrink)