In the UK, current policies and services for people with mental disorders, including those with intellectual disabilities (ID), presume that these men and women can, do, and should, make decisions for themselves. The new Mental Capacity Act (England and Wales) 2005 (MCA) sets this presumption into statute, and codifies how decisions relating to health and welfare should be made for those adults judged unable to make one or more such decisions autonomously. The MCA uses a procedural checklist (...) to guide this process of substitute decision-making. The personal experiences of providing direct support to seven men and women with ID living in residential care, however, showed that substitute decision-making took two forms, depending on the type of decision to be made. The first process, ‘strategic substitute decision-making’, paralleled the MCA’s legal and ethical framework, whilst the second process, ‘relational substitute decision-making’, was markedly different from these statutory procedures. In this setting, ‘relational substitute decision-making’ underpinned everyday personal and social interventions connected with residents’ daily living, and was situated within a framework of interpersonal and interdependent care relationships. The implications of these findings for residential services and the implementation of the MCA are discussed. (shrink)

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept that the (...) Substituted Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will be highlighted: (1) Should (...) there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

Introduction Substitute decision making on behalf of incapable patients is based on the ethical principle of ‘respect for autonomy’. This study was conducted to assess patients' wishes and preferences in terms of a substitute decision maker and determinants of such preferences. Methods The authors conducted a cross-sectional study and selected samples randomly from patients presenting at Farabi Eye Hospital clinics who were 18 years of age or older. Questionnaires were completed through interviews. Results 200 patients between the ages of 18 (...) and 83 years were interviewed. About 52% (N=105) were men and 73% (N=77) were married. Among married patients, the spouse was chosen as the substitute decision maker in only 51% of cases. Single men preferred their father first in 36% (N=9) of cases, while single girls chose their father in 5.6% (N=1) of cases and their most prevalent choice was other unmentioned people (33.3%, N=6). Most patients (93.5%) wished to be asked about their substitute decision maker when hospitalised. Conclusion The results of this study show that the people we usually consult for decisions concerning patient treatment are significantly different from the patients' preferred substitute decision makers. The authors suggest patients be allowed to choose their substitute decision maker while conscious. (shrink)

Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality of life (...) is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way. (shrink)

According to what we propose to call “the competence model,” competence is a necessary condition for valid informed consent. If a person is not competent to make a treatment decision, the decision must be made by a substitute decision-maker on her behalf. Recent reports of various United Nations human rights bodies claim that article 12 of the Convention on the Rights of Persons with Disabilities involves a wholesale rejection of this model, regardless of whether the model is based on a (...) status, outcome, or functional approach to competence. The alleged rationale of this rejection is that denying persons the right to make their own treatment decisions based on an assessment of competence necessarily discriminates against persons with mental disorders. Based on a philosophical account of the nature of discrimination, we argue that a version of the competence model that combines supported decision-making with a functional approach to competence does not discriminate against persons with mental disorders. Furthermore, we argue that status- and outcome-based versions of the competence model are discriminatory. (shrink)

BackgroundJunior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors’ decision-making processes when treating people with dementia who have advance care directives, or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: their legal compliance and decision-making process related to treatment decisions; the factors influencing their clinical decision-making; (...) and the factors associated with accurate responses to one hypothetical vignette. MethodA cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: bacterial pneumonia; or suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette.ResultsOverall, 116 junior doctors responded. In Vignette 1, 58% of respondents selected the legally compliant option. Participants who chose the legally compliant option perceived ‘following patient wishes’ and ‘legal requirements to follow ACDs’ as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the ‘ACD is relevant in my decision-making process, but other factors are more relevant’. In Vignette 2, 72% of respondents indicated they would commence treatment and 18% selected they would not commence treatment.. Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario.ConclusionsThere are critical gaps in junior doctors’ compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors’ clinical decision-making and ensure compliance with the law is required. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which (...) decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

Patients who are incompetent need a surrogate decision maker to make treatment decisons on their behalf. One of the main ethical questions that arise in this context is what standard ought to govern such decision making. According to the Substituted Judgment Standard, a surrogate ought to make the decision that the patient would have made, had he or she been competent. Although this standard has sometimes been criticized on the grounds of being difficult to apply, it has found wide (...) appeal, since it it is alleged to protect incompetent patients? right to autonomy. The main purpose of the thesis is to evaluate SJS, from a conceptual and ethical perspective. It argues that the traditional formulation of SJS is seriously incomplete, and discusses alternative ways of completing it. Moreover, it questions the received view on how SJS should be morally justified, by offering arguments against the view that decision making in accordance with this standard extends the patient's opportunities for self-determination. Instead it suggests a virtue-ethical approach according to which the moral point of SJS-based decision making is not to protect the patient's interests, but to express respect for person. The thesis also critically assesses empirical studies according to which surrogates often fail to correctly predict patients? actual treatment preferences. It is shown that such results cannot, for a number of reasons, support the conclusion drawn that surrogates are ill-equipped to make decisions that comply with SJS. (shrink)

The standard by which we apply decision-making for those unable to do so for themselves is an important practical ethical issue with substantial implications for the treatment and welfare of such individuals. The approach to proxy or surrogate decision-making based upon substituted judgement is often seen as the ideal standard to aim for but suffers from a need to provide a clear account of how to determine the validity of the proxy's judgements. Proponents have responded to this demand by (...) providing the truth-conditions for the substituted judgement in terms of counterfactual reasoning using a possible worlds semantics. In this paper, I show how these underpinnings fail to support the substituted judgement approach as a reasonable standard for decision-making. Firstly, I show how this counterfactual element has been poorly interpreted. I then explain how various accounts have failed to reflect problems and limitations associated with providing an interpretation of their truth-conditions using counterfactuals. Finally, I argue that, even when we attend to the initial problems of providing a counterfactual analysis, it still deeply problematic as a means of determining the validity of substituted judgements for two main reasons. Firstly, making determinate judgements as to the truth-value of these judgements will often not be possible and, secondly, there is a strong requirement when interpreting many counterfactual claims to charitably accede to their being true. I conclude that substituted judgements, as interpreted through counterfactual reasoning and possible worlds semantics, do not therefore provide an adequate standard for surrogate decision-making. (shrink)

It is commonly thought that when a patient is unable to make a treatment decision for herself, patient autonomy should be respected by consulting the views of a patient surrogate, normally either the next-of-kin or a person previously designated by the patient. On one view, the task of this surrogate is to make the treatment decision that the patient would have made if competent. But this so-called ‘substituted judgment standard’ (SJS) has come in for has come in for a (...) good deal of criticism recently. For instance, some question whether surrogates are able to reliably predict what the patient would have chosen. Others wonder how respecting a patient's counter-factual, rather than actual, choices is supposed to respect her autonomy. Such concerns have lead some to reject the SJS and argue for alternative characterisations of the role of surrogate decision-makers. (shrink)

Since several landmark legal decisions in the 1970s and 1980s, substituted judgment has become widely accepted as an approach to decision‐making for incapacitated patients that incorporates their autonomy and interests. Two notable exceptions have been cases involving minors and those involving cognitively or psychiatrically impaired individuals who never previously possessed the ability to contemplate the medical decisions involved in their care. While a best interest standard may have universal merit in pediatric cases, this paper argues that (...) class='Hi'>substituted judgement has been rejected too broadly for “never‐capacitated” patients. It then lays out a three‐condition test for using substituted judgment in these cases. For a subset of “never‐capacitated” patients who belong to distinctive religious or cultural communities with clear medical values and have an appropriate surrogate, these values may prove helpful in vindicating the interests of the never‐capacitated and should not be blanketly dismissed. (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)

Tiebreak rules are necessary for revealing indifference in non- sequential decisions. I focus on a preference relation that satisfies Ordering and fails Independence in the following way. Lotteries a and b are indifferent but the compound lottery f, 0.5b> is strictly preferred to the compound lottery f, 0.5a>. Using tiebreak rules the following is shown here: In sequential decisions when backward induction is applied, a preference like the one just described must alter the preference relation between a and (...) b at certain choice nodes, i.e., indifference between a and b is not stable. Using this result, I answer a question posed by Rabinowicz (1997) concerning admissibility in sequential decisions when indifferent options are substituted at choice nodes. (shrink)

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate (who may or may not hold the power of attorney ), and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore common (...) aversion of best interest judgments entails a risk that health care providers withdraw from the decision-making process, abandoning patients (or their family members) to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (shrink)

Consensus is growing among ethicists and lawyers that medical decision making for incompetent patients who were previously competent should be made in accordance with that person's prior wishes and desires. Moreover, this legal and ethical preference for the substituted judgment standard has found its way into the daily practice of medicine. However, what appears on the surface to be an agreement between jurists, bioethicists, and clinicians obscures the very real differences between disciplines regarding the actual implementation of the sub (...) stituted judgment standard. Ethicists and judges have carefully outlined how substituted judgments ought to be made and evaluated. Although differences arise, especially at the state court level, regarding the scope of the substituted judgment standard and its relation to other standards of surrogate decision making, agreement is fairly widespread on the priority of substituted judgment and on the necessity of sufficient evidence being available in order to support a particular substituted judgment. (shrink)

Substituted judgement is often used in the absence of advanced directives to guide decision-making when patients lack decisional capacity. We present a remarkable case of family members exercising substituted misjudgement for a 42-year-old man hospitalized with multiorgan failure on life support. Feeling that their loved one would rather die than face severe disability, they elected to withdraw life support. Although this was done, the patient remained alive and recovered enough to clearly indicate his preference for life, even with (...) severe disability. This case suggests that in instances of unusual quality-of-life judgements where the patient's wishes cannot be known with reasonable certainty, families and physicians should be very wary using substituted judgement to refuse life support. Unless there are strong considerations based on the patient's prior statements, actions and values to decline life support, it would seem ethically appropriate to continue treatment, even with substantial disability the likely outcome. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Journal of the History of Philosophy 39.2 (2001) 259-288 [Access article in PDF] Substitutes for Wisdom:Kant's Practical Thought and the Tradition of the Temperaments Mark Larrimore [Appendix]For much of Western history, the theory of the four temperaments played a vital part in medicine, anthropology, and moral reflection. The Hippocratic foursome of sanguine, choleric, melancholy, and phlegmatic survives on the margins of modernity, but its role in moral theory and (...) practice has been largely forgotten. Premodern understandings of human diversity based in climate, temperament, and politics collapsed with the Galenic medical tradition with which they harmonized. Yet temperament continued to be a feature of moral philosophies and philosophical anthropologies even into the twentieth century, and arguably has had a symbiotic relationship with the egalitarian aspirations of modern moral and political thought. This essay surveys the development and practical consequences of the theory of the temperaments developed by one of the greatest prophets of modern values, Immanuel Kant.Temperament was a feature in Kant's course in anthropology from the 1760s until the end of his life. Kant's teachings on temperament are by turns creative and conservative, and bespeak a deep understanding of the logic and rationale of humoral characterology in ethics. But as Kant moves from an ethics based in feeling to an ethics based on the possibility of autonomy, his theory of temperament also changes. In 1764's Observations on the Feeling of the Beautiful and the Sublime, Kant eloquently celebrates the melancholy as the temperament capable of "genuine virtue" (Obs2:217-18/60); by the time of Anthropology from a Pragmatic Point of View (1798), he is commending instead "phlegma as strength" (a variant of a temperament he had earlier dismissed), which can serve as a "substitute for wisdom" (Ant7:290/155). 1 Both of these [End Page 259] positions are distinctive, especially for an eighteenth-century thinker. As we will see, however, they are not without precedent in the tradition of temperament theory. Whether Kant knew he was developing countertraditions of temperament or not, his arguments in each case creatively exploit tensions in the humoral system which go back to its origins in ancient Greece.The mature Kant defended the classic foursome at a time when it had come under fire from many quarters. The early nineteenth century historian of temperament theories Harro Wilhelm Dircksen thought Kant played a decisive role in saving the classical theory from oblivion. 2 Why did Kant think it worth retrieving? One would expect him to reject a category which eighteenth-century German Popularphilosophie understood as a proto-psychological category bridging the gap between body and mind, nature and freedom. Yet, as I shall argue, the very things which might seem to render a theory of temperament incompatible with his mature ethics of autonomy make it important to [End Page 260] Kant. An understanding of human embodiment and diversity like that of the tradition of the temperaments forms part of the background to Kant's practical thought, and ethical formalism makes more rather than less sense if difference is taken seriously. For the same reason, it is important to have the right account of diversity. The complicated view of temperament in the Anthropology furnishes a microcosm of Kant's understanding of the fraught role of empirical considerations in recognizing and promoting freedom in rational agents embodied in human form(s).In this essay I will (1) provide a brief survey of the tradition of temperament theorizing before Kant, and expound Kant's (2) early and (3) mature views of temperament in the context of this tradition, as well as in the context of his emerging practical philosophy. 3 Some well-known parts of Kant's ethics make a new kind of sense when read in the light of the fact that their author thought humanity subdivided into temperaments. 1. The Tradition of the Temperaments 1.1. The history of moralizing about and through the temperaments is complex and—once one moves beyond the melancholy—largely uncharted. Here I will... (shrink)

Fundamental to Quine’s philosophy of logic is the thesis that substitutional quantification does not express existence. This paper considers the content of this claim and the reasons for thinking it is true.

Substituted judgment has increasingly become the accepted standard for rendering decisions for incapacitated adults in the USA. A broad exception exists with regard to patients with diminished capacity secondary to depressive disorders, as such patients’ previous wishes are generally not honoured when seeking to turn down life-preserving care or pursue aid-in-dying. The result is that physicians often force involuntary treatment on patients with poor medical prognoses and/or low quality of life as a result of their depressive symptoms when (...) similarly situated incapacitated patients without such depressive symptoms would have their previous wishes honoured via substituted judgment. This commentary argues for reconsidering this approach and for using a substituted judgment standard for a subset of EMP/LQL patients seeking death. (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)

This article grapples with Robert Brandom’s account of singular terms. I argue that neither Brandom’s answer to the question “What are singular terms?” nor his answer to the question “Why are there any singular terms?” works as they currently stand. Brandom’s substitution-inferential semantic account of what singular terms are fails to distinguish between the semantic role of singular terms and indefinite descriptions, and Brandom’s “expressive transcendental deduction” for why there are any singular terms fails to deciseively show that singular terms (...) are expressively necessary for the use of logical vocabulary. Still, I then characterize how Brandom does have resources within his substitution-inferential semantics to give a better, revised answer to the question “What are singular terms?” that both fits programmatically within his framework and has a curious Kantian parallel. I leave the matter offering a Brandom-friendly replacement account for why there are any singular terms thus conceived for another occasion. (shrink)

Fallacies are the ‘ideal types of improper inference’, named only because they represent a common or seductive error. Naming them facilitates identification (reducing ‘false negatives’ in argument evaluation), but increases the risk of false positives; it is essentially a cost-effectiveness issue whether to introduce a new name. Statistical fallacies include errors of elementary experimental design, but also conceptual confusions, e.g. of cause with correlation, of association with guilt, where an illicit substitution is made. The focus here is on recent nationwide (...) efforts to replace criteria of merit with correlates of success, in the evaluation of teaching. This involves a number of mistakes, including ‘precipitate decision’, confusing the normative with the descriptive, and using minimax when optimizing or maximin is appropriate, as well as various legal and ethical blunders. (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)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even if (...) such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Article 12 (Equal Recognition before the Law) of the UN Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities: the recognition of legal capacity. Legal capacity means recognizing the right to make decisions for oneself. Article 12 is also moving in the direction of supported decision-making, as an alternative (...) to substituted decision-making. The objective of this paper is to show conceptually the connection between supported decisionmaking and the preservation of personal autonomy for persons with intellectual disabilities. This paper discusses supported decision-making based on Bach and Kerzner's model: (a) legally independent status, (b) supported decision- making status, and (c) facilitated decision-making status. Arguments will be made based on John Stuart Mill's concept of autonomy and arguments against it using Sarah Conly's argument for paternalism. (shrink)

This paper uses duality to elaborate Slutzky equations of risks in quasi-linear decision models extended by independent background risks. Wealth, substitution and total effects are characterized in terms of mean-variance preferences. It is shown that both Pratt and Zeckhauser’s proper risk aversion and Kimball’s standard risk aversion are sufficient for negative substitution effects.

Seidenfeld (Seidenfeld, T. [1988a], Decision theory without 'Independence' or without 'Ordering', Economics and Philosophy 4: 267-290) gave an argument for Independence based on a supposition that admissibility of a sequential option is preserved under substitution of indifferents at choice nodes (S). To avoid a natural complaint that (S) begs the question against a critic of Independence, he provided an independent proof of (S) in his (Seidenfeld, T. [1988b], Rejoinder [to Hammond and McClennen], Economics and Philosophy 4: 309-315). In reply to (...) my (Rabinowicz, W. [1995], To have one's cake and eat it too: Sequential choice and expected-utility violations, The Journal of Philosophy 92: 586-620), in which I argue that the proof is invalid, Seidenfeld (Seidenfeld, T. [2000], Substitution of indifferent options at choice nodes and admissibility: A reply to Rabinowicz, Theory and Decision 48: 305–310 this issue) submits that I fail to give due consideration to one of the underlying assumptions of his derivation: it is meant to apply only to those cases in which the agent's preferences are stable throughout the sequential decision process. The purpose of this note is to clarify the notion of preference stability so as meet this objection. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this (...) essay, we discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

U.K. regulation of sexual identity within a marriage context has traditionally been linked to biological sex. In response to the European Court of Human Rights decisions in Goodwin and I.,2 and in order to address the question of whether a transsexual person can be treated as a “real” member of their adoptive sex, the U.K. has recently passed the Gender Recognition Act 2004. While the Act appears to signal a move away from biology and towards a conception of sexual (...) identity based on gender rather than sex, questions of sexual identity remain rooted in medico-legal assessments of the individual transsexual body/mind. In contrast, because transsexual people in some parts of Canada have been able to marry in their post-operative sex since 1990, contemporary debates on the sexual identity of transsexual people in British Columbia and Ontario do not focus on the validity of marriage, and more frequently centre upon the provision of goods and services, in human rights contexts where sex is said to matter. Currently in Canada this is prompting questions of what it means to be a woman in society, how the law should interpret sex and gender, and how, if at all, the parameters of sexual identity should be established in law. This article seeks to compare recent U.K. legal conceptualisations of transsexuality with Canadian law in this area. As human rights discourse begins to grow in the U.K., the question remains as to whether or not gender will become an adequate substitute for sex. (shrink)

We’re often unsure what morality requires, but we need to act anyway. There is a growing philosophical literature on how to navigate moral uncertainty. But much of it asks how to rationally pursue the goal of acting morally, using decision-theoretic models to address that question. I argue that using these popular approaches leaves some central and pressing questions about moral uncertainty unaddressed. To help us make sense of experiences of moral uncertainty, we should shift away from focusing on what it’s (...) rational to do when facing moral uncertainty, and instead look directly at what it’s moral to do about moral uncertainty—for example, how risk averse we morally ought to be, or which personal sacrifices we’re morally obligated to make in order to reduce our risk of moral wrongdoing. And orthodox, expectation-maximizing, decision-theoretic models aren’t well-suited to this task—in part because they presuppose the answers to some important moral questions. For example, if approaching moral uncertainty in a moral way requires us to “maximize expected moral rightness,” that’s, itself, a contentious claim about the demands of morality—one that requires significant moral argument, and that I ultimately suggest is mistaken. Of course, it’s possible to opt, instead, for a variety of alternative decision-theoretic models. But, in order to choose between proposed decision-theoretic models, and select one that is well-suited to handling these cases, we first would need to settle more foundational, moral questions—about, for example, what we should be willing to give up in order to reduce the risk that we’re acting wrongly. Decision theory may be able to formalize the conclusions of these deliberations, but it is not a substitute for them, and it won’t be able to settle the right answers in advance. For now, when we discuss moral uncertainty, we need to wade directly into moral debate, without the aid of decision theory’s formalism. (shrink)

It has been argued by disability advocates that supported decision-making must replace surrogate, or substituted, decision-making for people with cognitive disabilities. From a moral perspective surrogate decision-making it is said to be an indefensible form of paternalism. At the heart of this argument against surrogate decision-making is the belief that such paternalistic action expresses something fundamentally disrespectful about those upon whom it is imposed: that they are inferior, deficient or child-like in some way. Contrary to this widespread belief, I (...) will argue that surrogate decision-making sometimes expresses more respect for people with life-long, ‘severe’ or ‘profound’ cognitive disabilities than does the adoption of supported decision-making.. Specifically, I argue that in some cases supported decision-making can arguably express that people with severe or profound cognitive disabilities lack equal moral value. I also argue that supported decision-making for people with profound cognitive disabilities can arguably express that they lack complex and rich inner lives. If our aim is to ensure our behaviour and practices express respect for people with life-long ‘severe’ or ‘profound’ cognitive disabilities, then sometimes surrogate rather than supportive decision-making will be a better option. (shrink)

The so-called Substituted Judgment Standard is one of several competing principles on how certain health care decisions ought to be made for patients who are not themselves capable of making decisions of the relevant kind. It says that a surrogate decision-maker, acting on behalf of the patient, ought to make the decision the patient would have made, had the latter been competent. The most common way of justifying the Substituted Judgment Standard is to maintain that this (...) standard protects patients’ right to autonomy, or self-determination, in the situation where they are no longer able to exercise this right on their own. In this paper we question this justification, by arguing that the most commonly suggested moral reasons for allowing and encouraging people to make their own choices seem not to apply when the patient’s decision-making is merely hypothetical. We end with some brief sketches of possible alternative ways of justifying the Substituted Judgment Standard. (shrink)

People with cognitive impairments often have difficulties formulating, understanding, or articulating decisions that others judge reasonable. The frequent response shifts decision-making authority to substitutes through advance directives of the person or guardianship orders from a court. The Convention on the Rights of People with Disabilities defends supported decision-making as an alternative to such forms of supplanted decision-making. But supported decision-making raises both metaphysical questions—what is required for a decision to be the person’s own?—and epistemological questions: how do we know (...) what persons judge to be their good, when they have difficulty conceptualizing and articulating? It raises practical questions, too, such as protection against risks of exploitation. This article uses a non-discrimination account of legal personhood drawn from the CRPD to explore how common features of decisions employed by people without cognitive disabilities are important in supported decision-making too. These features include prostheses, guardrails, relationships, and social contexts. (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.

Perhaps the most troublesome medical decisionmaking cases facing state courts concern serious healthcare decisions involving patients with severe or profound retardation. The courts who face this issue encounter a difficult dilemma. A decision to terminate a medical treatment of a dependent, vulnerable person requires considerable solicitude. Allowing a helpless person to die sooner than is medically possible directly conflicts with that person's most basic right – the right to live. However, continuing treatment in the face of terminal illness may (...) not only prolong but also increase intense mental and physical suffering. Perpetuating near torture in the name of protecting a person's life may be equally worrisome. (shrink)

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, we (...) argue that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust. (shrink)

BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis (...) of a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, the decision that ought to be made for the incompetent patient is the decision the patient would have made, had he or she been competent. Although the merits of this standard have been extensively debated, some important issues have not been sufficiently explored. One fundamental problem is that the substituted judgment standard, as commonly formulated, is indeterminate (...) in content and thus offers the surrogate little or no guidance. What the standard does not specify is just how competent one should imagine the patient to be, and what else one ought to envision about the patient’s hypothetical outlook and the circumstances surrounding his or her decision making. The article discusses this problem of underdetermined decision conditions. (shrink)

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about the means by which (...) we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

Families frequently act as substitute decisionmakers for their older members who suffer from diminished mental capacity to make and express their own medical choices. Substitute decisionmaking takes on particular ethical and legal urgency within the nursing home environment, especially when choices concern potential medical treatment near the end of the nursing home resident's life. This article examines current legal mechanisms in the United States that enable a family to make substitute medical decisions, the ethical underpinnings of those mechanisms, and (...) specific ethical and legal considerations implicated by their application to the nursing home setting. The article offers advice to nursing home professionals, including physicians, in working with families as substitute decisionmakers. (shrink)