On subjective measures of decision quality.

In times of person-centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web-based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person-centered care point in unethical directions.

Authenticity and the argument from testability: a bottom-up approach : Author.

Jesper Ahlin Marceta published an article in this journal in which he formulated his "argument from testability", stating that it is impossible, at least practically, to operationalize procedural authenticity. That is, using procedural accounts of authenticity, one cannot reliably differentiate between authentic and inauthentic desires. There are roughly two ways to respond to the argument from testability: top-down and bottom-up. Several authors have endeavored the top-down approach by trying to show that some conceptions of authenticity might be operationalizable after all. At present, however, the bottom-up approach has not been put to the test. That is, no attempt has been made to use a currently existing assessment tool to guide the development of an account of authenticity. In this paper, I will investigate what it means to develop an account of authenticity bottom-up based on measures of concordance. More specifically, I will investigate the following three research questions. First, how do concordance and authenticity relate at a conceptual level? As crucial similarities exist between these concepts, concordance measures seem to offer a good starting point for the bottom-up approach. Second, how do judgements of concordance differ from judgements of authenticity? Both their scope and the way they are justified will turn out to be different. This suggests novel ways to react to Marceta's argument from testability. Third, should we develop a theory of concordance? The positive answer to this question will point towards a central limitation of the bottom-up approach.

On the relation between decision quality and autonomy in times of patient-centered care: a case study.

It is commonplace that care should be patient-centered. Nevertheless, no universally agreed-upon definition of patient-centered care exists. By consequence, the relation between patient-centered care as such and ethical principles cannot be investigated. However, some research has been performed on the relation between specific models of patient-centered care and ethical principles such as respect for autonomy and beneficence. In this article, I offer a detailed case study on the relationship between specific measures of patient-centered care and the ethical principle of respect for autonomy. Decision Quality Instruments (DQIs) are patient-centered care measures that were developed by Karen Sepucha and colleagues. The model of patient-centered care that guided the development of these DQIs pays special attention to the ethical principle of respect for autonomy. Using Jonathan Pugh's theory of rational autonomy, I will investigate how the DQIs relate to patient autonomy. After outlining Pugh's theory of rational autonomy and framing the DQIs accordingly (Part I), I will investigate whether the methodological choices made while developing these DQIs align with respect for autonomy (Part II). My analysis will indicate several tensions between DQIs and patient autonomy that could result in what I call "structural paternalism." These tensions offer us sufficient reasons, especially given the importance of the ethical principle of respect for autonomy, to initiate a more encompassing debate on the normative validity of Decision Quality Instruments. The aim of the present paper is to highlight the need for, and to offer a roadmap to, this debate.

Watson, autonomy and value flexibility: revisiting the debate.

Many ethical concerns have been voiced about Clinical Decision Support Systems (CDSSs). Special attention has been paid to the effect of CDSSs on autonomy, responsibility, fairness and transparency. This journal has featured a discussion between Rosalind McDougall and Ezio Di Nucci that focused on the impact of IBM's Watson for Oncology (Watson) on autonomy. The present article elaborates on this discussion in three ways. First, using Jonathan Pugh's account of rational autonomy we show that how Watson presents its results might impact decisional autonomy, while how Watson produces knowledge might affect practical autonomy. Second, by drawing an analogy with patient decision aids we identify an empirical way of estimating Watson's impact on autonomy (ie, value-congruence). Lastly, McDougall introduced the notion of value-flexible design as a way to account for the diverging preferences patients hold. We will clarify its relation with the established domain of value-sensitive design. In terms of the tripartite methodology of value-sensitive design, we offer a conceptual clarification using Pugh's account of rational autonomy, an empirical tool to evaluate Watson's impact on autonomy and situate a group of technical options to incorporate autonomy in Watson's design.