Patient’s decision making competence is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals’ duty to take care (...) of their patient’s best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas. (shrink)

The Substituted Judgment Standard for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this article, I offer an alternative (...) standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy. (shrink)

There are three lines of argument in defence of coercive treatment of patients with mental disorders: arguments regarding (1) societal interests to protect others, (2) the patients' own health interests, and (3) patient autonomy. In this paper, we analyse these arguments in relation to an idealized case, where a person with a mental disorder claims not to want medical treatment for religious reasons. We also discuss who should decide what in situations where patients with mental disorders deny treatment on seemingly (...) rational grounds.We conclude that, in principle, coercive treatment cannot be defended for the sake of protecting others. While coercive actions can be acceptable in order to protect close family and others, medical treatment is not justified for such reasons but should be given only in the interest of patients. Coercive treatment may be required in order to promote the patient's health interests, but health interests have to waive if they go against the autonomous interests of the patient. We argue that non-autonomous patients can have reasons, rooted in their deeply-set values, to renounce compulsory institutional treatment, and that such reasons should be respected unless it can be assumed that their new predicaments have caused them to change their views. (shrink)

ZusammenfassungEin Großteil der medizinisch und ethisch schwierigen Therapieentscheidungen betrifft kritisch kranke, einwilligungsunfähige Patienten und wird auf Basis des mutmaßlichen Patientenwillens getroffen. Das Gesetz kann hierzu nur allgemeine Vorgaben geben. Es ist für die behandelnden Ärzte essentiell, sich ein konkretes Vorgehen zu erarbeiten. Wie in der Praxis vorgegangen wird, ist bisher kaum untersucht. Ziel dieser Studie ist es, die Vielfalt der Herangehensweisen und Erfahrungen von Klinikern zum mutmaßlichen Patientenwillen zu erforschen. Wir führten semistrukturierte Interviews mit 18 Ärzten und elf Pflegekräften von (...) intensiv- und palliativmedizinischen Abteilungen eines Universitätsklinikums durch. Die Abschriften der Tonaufnahmen wurden mithilfe der Qualitativen Datenanalyse ausgewertet. Auf einer numerischen Ratingskala wurde erhoben, wie hilfreich die Kliniker das Konzept des mutmaßlichen Willens fanden. Die meisten Studienteilnehmer hielten das Konzept des mutmaßlichen Willens für sehr hilfreich. Zu ihrem Vorgehen berichteten sie, dass sie zumeist die nächsten Angehörigen befragen, zuweilen auch Professionelle und falls möglich die Patienten selbst. Gefragt werde nach früheren Äußerungen der Patienten, nach ihrer Lebenspraxis und -einstellung sowie ihrem aktuellen Verhalten. Benannt wurden auch zahlreiche Unsicherheiten und Schwierigkeiten psychologischer, sozialer, praktischer und konzeptioneller Natur. Der mutmaßliche Patientenwille wird, so unser Ergebnis, in der von uns untersuchten klinischen Praxis entsprechend den gesetzlichen Vorgaben ermittelt. Da jedoch zahlreiche Probleme berichtet werden, stellen wir konkrete Empfehlungen zur Ermittlung des mutmaßlichen Willens vor. (shrink)

It is widely accepted that children enjoy some form of a right to bodily integrity. However, there is little agreement about the precise nature and scope of this right. This paper offers a conceptual analysis of the child's right to bodily integrity, in order to further elucidate the relationship between the child's right to bodily integrity and considerations of autonomy. Following a discussion of Leif Wenar's work on the structure and justification of rights, I first explain how the adult's right (...) to bodily integrity can be distilled into separate elements that may plausibly be justified by different moral considerations. In particular, I claim that this analysis suggests that whilst the adult's right to bodily integrity is not wholly reducible to bodily autonomy, autonomy nonetheless remains entwined with our understanding of this right in a number of ways. On the basis of this discussion, I go on to outline three important complexities that arise when we consider the child's right to bodily integrity, before particularly focusing on the question of how third parties should determine whether or not to perform a physical interference upon a child who lacks decision-making capacity. Here, I raise some objections to Earp and Mazor's recent attempts to answer this question, before briefly defending an ‘autonomy-based interests’ account of permissible interference, an account that shares in what I take to be the spirit, if not the precise letter, of these earlier views. (shrink)

A primary goal of clinical practice is to respect patient autonomy. To promote this goal for patients who have lost the ability to make their own decisions, commentators recommend that surrogates make their treatment decisions based on the substituted judgment standard. This standard is commonly interpreted as directing surrogates to make the decision the patient would have made in the circumstances, if the patient were competent. However, recent commentators have argued that this approach—attempting to make the decision the patient would (...) have made if competent—is theoretically problematic, practically infeasible, and ignores the interests of the patient9s family and loved ones. These commentators conclude that the substituted judgment standard should be revised significantly, or abandoned altogether. While this response would avoid the cited problems, it also would require substantial changes to clinical practice and would raise significant problems of its own. The present paper thus considers the possibility that the criticisms do not point to problems with the substituted judgment standard itself; instead, they point to problems with the way it is most commonly interpreted. This analysis suggests that the substituted judgment standard need not be dramatically revised or abandoned. Instead, it should be interpreted in a way that effectively promotes respect for the autonomy of incompetent patients. The ‘endorsed life’ interpretation described here helps clinicians and surrogates to achieve this important goal. To clarify this approach, we explain how it differs from three other recently proposed alternatives to the standard interpretation of the substituted judgment standard. (shrink)

Abstract:Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient’s conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, advance directives become effective (...) when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress. (shrink)

The principle of self-determination plays a crucial role in contemporary clinical ethics. Somewhat simplified, it states that it is ultimately the patient who should decide whether or not to accept suggested treatment or care. Although the principle is much discussed in the academic literature, one important aspect has been neglected, namely the fact that real-world decision making is temporally extended, in the sense that it generally takes some time from the point at which the physician determines that there is a (...) decision to be made and that the patient is capable of making it, to the point at which the patient is actually asked for his or her view. This article asks under what circumstances, if any, temporising—waiting to pose a certain treatment question to a patient judged to have decision-making capacity—is compatible with the principle of self-determination. (shrink)

According to the Substituted Judgment Standard a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. This standard has received a fair amount of criticism, but the objections raised are often wide of the mark. In this article we discuss three objections based on empirical research, and explain why these do not give us reason to abandon the Substituted Judgment Standard.

Research on incompetent humans raises ethical challenges, especially when there is no direct benefit to these research subjects. Contemporary codes of research ethics typically require that such research must specifically serve to benefit the population to which the research subjects belong. The article critically examines this “same-population condition”, raising issues of both interpretation and moral justification. Of particular concern is the risk that the way in which the condition is articulated and rationalized in effect disguises or downplays the instrumentalization of (...) incompetent individuals. (shrink)

Eine patientengerechte Versorgung ist ein hohes Ziel. Unangemessene Behandlung wie Unter- oder Überversorgung zu erkennen und zu vermeiden, stellt Ärztinnen/Ärzte und Pflegende am Krankenbett vor schwierige Entscheidungen. Hier ist die Entwicklung von praxistauglichen Orientierungshilfen angezeigt, die wissenschaftlichen Kriterien genügen und nicht allein auf Konsens beruhen. Die vorliegende Arbeit versucht, zentrale Normen zur Vermeidung von Über- und Unterversorgung zu formulieren und theoretisch zu fundieren. Dafür wird auf Basis einer Interessen-basierten Ethik eine Graduierung der Autonomie vorgenommen, indem zwischen schwacher und starker Autonomie (...) unterschieden wird. (shrink)

Eine patientengerechte Versorgung ist ein hohes Ziel. Unangemessene Behandlung wie Unter- oder Überversorgung zu erkennen und zu vermeiden, stellt Ärztinnen/Ärzte und Pflegende am Krankenbett vor schwierige Entscheidungen. Hier ist die Entwicklung von praxistauglichen Orientierungshilfen angezeigt, die wissenschaftlichen Kriterien genügen und nicht allein auf Konsens beruhen. Die vorliegende Arbeit versucht, zentrale Normen zur Vermeidung von Über- und Unterversorgung zu formulieren und theoretisch zu fundieren. Dafür wird auf Basis einer Interessen-basierten Ethik eine Graduierung der Autonomie vorgenommen, indem zwischen schwacher und starker Autonomie (...) unterschieden wird. (shrink)

The principle of respect for autonomy often dominates the bioethical discourse. Yet despite its prominence, the exact contours are not always well defined. Widespread disagreement about the nature of autonomy has led some to conclude that autonomy is hopelessly vague and therefore ought to be abandoned in contemporary bioethics. Despite calls to move beyond it, autonomy remains at the center of bioethical reflection. The challenge, then, if autonomy is to function as a bedrock of contemporary bioethics, is to define more (...) clearly the shape of autonomy, to mark more precisely its conceptual boundaries, and to delineate more carefully how best autonomy is put into practice in medical ethics. In this article, I raise questions about the ways autonomy is used in theory, as well as the ways that it is operationalized in practice. (shrink)

On a traditional interpretation of the substituted judgement standard a person who makes treatment decisions on behalf of a non-competent patient ought to decide as the patient would have decided had she been competent. I propose an alternative interpretation of SJS in which the surrogate is required to infer what the patient actually thought about these end-of-life decisions. In clarifying SJS it is also important to differentiate the patient's consent and preference. If SJS is part of an autonomy ideal of (...) the sort found in Kantian ethics, consent seems more important than preference. From a utilitarian perspective a preference-based reading of SJS seems natural. I argue that the justification of SJS within a utilitarian framework will boil down to the question whether a non-competent patient can be said to have any surviving preferences. If we give a virtue-ethical justification of SJS the relative importance of consent and preferences depends on which virtue one stresses-respect or care. I argue that SJS might be an independent normative method for extending the patient's autonomy, both from a Kantian and a virtue ethical perspective. (shrink)