Center for Ethics

This thesis analyzes specific challenges concerning 'truth-telling' war reporters face when reporting on international conflict. For this purpose truth is examined in accordance with journalistic principles outlined in codes of ethics, with a focus on objectivity and fairness. The aim is to discover ways to improve the application of principles, in order to battle epistemic errors and the effects they entail: polarization, reductionism, and superficiality. The study concludes that providing context and nuance is crucial, but that codes -although essential-are insufficient in helping journalists decide what is relevant and what is not. An approach in virtue ethics is recommended where phronesis (or practical wisdom) can inspire responsible journalists to comply with the spirit, rather than the letter of the principles.

Although the concept of Responsible Innovation (RI) has been applied to different types of innovations, three common assumptions have remained the same. First, emerging technologies require assessment because of their radical novelty and unpredictability. Second, early assessment is necessary to impact the innovation trajectory. Third, anticipation of unknowns is needed to prepare for the unpredictable. I argue that these assumptions do not hold for liminal innovation practices in clinical settings, which are defined by continuous transition on both sides of the threshold between experiment and implementation, and between research and care. First of all, technologies at the center of liminal innovation practices have different characteristics than those typically attributed to emerging technologies. Additionally, the innovation trajectory is significantly different allowing continuous assessment and shaping long after implementation. Finally, these differences demand a reorientation in RI approaches for these cases, away from anticipation of the unknown and uncertain, and returning to observation of the known and predictable.

A self-fulfilling prophecy (SFP) in neuroprognostication occurs when a patient in coma is predicted to have a poor outcome, and life-sustaining treatment is withdrawn on the basis of that prediction, thus directly bringing about a poor outcome (viz. death) for that patient. In contrast to the predominant emphasis in the bioethics literature, we look beyond the moral issues raised by the possibility that an erroneous prediction might lead to the death of a patient who otherwise would have lived. Instead, we focus on the problematic epistemic consequences of neuroprognostic SFPs in settings where research and practice intersect. When this sort of SFP occurs, the problem is that physicians and researchers are never in a position to notice whether their original prognosis was correct or incorrect, since the patient dies anyway. Thus, SFPs keep us from discerning false positives from true positives, inhibiting proper assessment of novel prognostic tests. This epistemic problem of SFPs th...

AIM To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. METHODS A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and chi2 tests for differences between countries. RESULTS In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17-44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR=1.99, p<0.001) or the Netherlands (OR=1.74, p<0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR=3.76, p<0.001), Germany (OR=2.21, p<0.001), or the Netherlands (OR=2.39, p<0.001). CONCLUSIONS Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests.

When information on a coma patient’s expected outcome is uncertain, a moral dilemma arises in clinical practice: if life-sustaining treatment is continued, the patient may survive with unacceptably poor neurological prospects, but if withdrawn a patient who could have recovered may die. Continuous electroencephalogram-monitoring (cEEG) is expected to substantially improve neuroprognostication for patients in coma after cardiac arrest. This raises expectations that decisions whether or not to withdraw will become easier. This paper investigates that expectation, exploring cEEG’s impacts when it becomes part of a socio-technical network in an Intensive Care Unit (ICU). Based on observations in two ICUs in the Netherlands and one in the USA that had cEEG implemented for research, we interviewed 25 family members, healthcare professionals, and surviving patients. The analysis focuses on (a) the way patient outcomes are constructed, (b) the kind of decision support these outcomes provide...

No parts of this thesis may be reproduced, stored in a retrieval system or transmitted in any form or by any means without permission of the author. Alle rechten voorbehouden. Niets uit deze uitgave mag worden vermenigvuldigd, in enige vorm of op enige wijze, zonder voorafgaande schriftelijke toestemming van de auteur. iv EXAMINATION COMMITTEE: Chairman/secretary prof.dr. Th.A.J. Toonen Supervisors prof. dr. M. Boenink (University of Twente) prof. dr. P.A.E. Brey (University of Twente) Members prof. dr. M.E.H. Ong (Duke-NUS) dr. J. Mesman (Maastricht University) dr. E.O.J. Kompanje (Erasmus MC) prof. dr. ir. M. Boon (University of Twente) prof. dr. C. Aydin (University of Twente) v This work was funded by the Dutch Organization for Scientific Research (NWO), under its programme Responsible Innovation (NWO-MVI) [grant number 313 99 309], with co-funding from Twente Medical Systems international (TMSi), Clinical Science Systems (CSS), and the Dutch Brain Foundation (Hersenstichting). vi TABLE OF CONTENTS Preface vii 4. Making decisions in the face of uncertainty: the dilemma 4.1 Choosing to withdraw treatment 4.2 Choosing to continue treatment 4.3 Delay or advance decision-making: extended and reduced windows of opportunity 5. Braving uncertainty: avoiding the greatest harm 5.1 The suffering of the patient versus their life lost 5.2 Emotional and psychological impact for next of kin and caregivers 5.3 Societal cost and distributive justice 6. Conclusion CHAPTER 3 Predicting Medical Futility After Cardiac Arrest: pulling apart physiological and normative uncertainty viii 5.2.1. Responding to 'poor' outcomes 5.2.2. Responding to 'good' outcome 5.2.3. Responding to uncertain outcomes 5.3. Facilitating communication 5.3.1. Visualization of results 5.3.2. Timing of disclosure of prognostic outcome 6. Summing up and looking forward CHAPTER 5 Preferences for prognostication of coma after cardiac arrest: the Dutch societal perspective on physiological and normative futility "Deciding whether and when to use a new tool can be one of the most difficult challenges in clinical practice.

The typical outcome measure in infertility treatment is the (cumulative) healthy live birth rate per patient or per cycle. This means that those who end the treatment trajectory with a healthy baby in their arms are considered to be successful and those who do not are considered to have failed. In this article, we argue that by adopting the healthy live birth standard as the outcome measure that defines a successful fertility treatment, it becomes an interpretative self-fulfilling prophecy: those who achieve the goal consider themselves successful and those who do not consider themselves failures. This is regardless of the fact that having children is only one out of many ways to alleviate the suffering related to infertility and that stopping fertility treatment can also be a positive decision to move on to other goals, rather than a form of “giving up,” “dropping out,” “nonadherence,” or failure. We suggest that those seeking fertility treatment would be served better by an alternative outcome measure, which can be equally self‐fulfilling, according to which a successful treatment is one in which people leave the clinic released from the suffering that accompanied their status as infertile when they first entered the clinic. This new outcome measure still implies that walking out with a healthy baby is a positive outcome. What changes is that walking out without a baby can also be a positive outcome, rather than being marked exclusively as a failure.

This article first describes the mechanism of any self-fulfilling prophecy through discussion of its four conditions: credibility, employment, employment sensitivity, and realization. Each condition is illustrated with examples specific to the medical context. The descriptive account ends with the definition of self-fulfilling prophecy and an expansion on collective self-fulfilling prophecies. Second, the normative account then discusses the moral relevance of self-fulfilling prophecies in medicine. A self-fulfilling prophecy is typically considered problematic when the prediction itself changes the predicted outcome to match the prediction (transformative self-fulfillment). I argue that also self-fulfilling prophecies that do not change the outcome but change the ways in which the outcome was realized (operative selffulfillment), have significant ethical and epistemic ramifications. Because it is difficult to distinguish, retrospectively, between a transformative and an operative selffulfilling prophecy, and thus between a false or true positive, it becomes equally difficult to catch mistakes. Moreover, since the prediction necessarily turns out true, there is never an error signal warning that a mistake might have been made. On the contrary, accuracy is seen as the standard for quality assurance. As such, selffulfilling prophecies inhibit our ability to learn, inviting repetition and exacerbation of mistakes. With the rise of automated diagnostic and prognostic procedures and the increased use of machine learning and artificial intelligence for the development of predictive algorithms, attention to self-fulfilling feedback loops is especially warranted. This account of self-fulfilling prophecies is practically relevant for medical research and clinical practice. With it, researchers and practitioners can detect and analyze potential self-fulfilling mechanisms in any medical case and take responsibility for their ethical and epistemic implications.