Hastings Center Report, Volume 52, Issue 5, Page 24-31, September–October 2022.

Volume 20, Issue 8, August 2020, Page 104-106.

We agree with Emily Walsh (2020) that the current preferences of patients with dementia should sometimes supersede those patients’ advance directives. We also agree that consensus clinical ethics guidance does a poor job of explaining the moral value of such patients’ preferences. Furthermore, Walsh correctly notes that clinicians are often averse to treating patients with dementia over their objections, and that this aversion reflects clinical wisdom that can inform revisions to clinical ethics guidance. But Walsh’s account of the moral value (...) of the preferences of patients with dementia suffers from three major problems: (1) it does not engage the actual practices of clinical ethics; (2) it provides an inadequate account of why these patients’ preferences matter; and (3) it offers a poor explanation of clinicians’ intuitions in these cases. Her arguments engage a philosophical debate that is largely irrelevant to clinical practice and she therefore leaves pressing real-world clinical ethics questions unaddressed. After underscoring some of Walsh’s main points, we will discuss each of these shortcomings. (shrink)

Volume 20, Issue 8, August 2020, Page 101-104.

Volume 20, Issue 8, August 2020, Page 88-90.

Definition of the problemAdvance directives involve evaluative assumptions about the further course of one’s life that can be more or less appropriate and thus call for ethical reflection. This contribution focuses on the basis and criteria of such assumptions. We argue that considerations regarding the temporal structure of a good life constitute a particularly relevant perspective in this context.ArgumentsEmpirical studies on the individual composition of advance directives point to the important role of personal values and life plans that can change (...) over time. Therefore, we first contextualize advance directives from the perspective of an ethics of the good life and then discuss their implications with regard to different levels of temporality, comprising fundamental parameters of human existence in time, cultural models of the life course, as well as narratives of the individual trajectory of life.ConclusionConceptions of a good life and its temporal structure represent an important perspective for drafting and interpreting advance directives. Their consideration provides a more nuanced understanding of the evaluative implications of advance care planning. This can benefit individual patients, service providers, as well as policy makers. (shrink)

Patientenverfügungen und andere Arten gesundheitlicher Vorausverfügungen wie Advance Care Planning und in gewisser Hinsicht auch Vorsorgevollmachten und Betreuungsverfügungen schließen evaluativ gehaltvolle Annahmen und Werturteile über den weiteren Verlauf des eigenen Lebens ein, die sich als mehr oder weniger angemessen erweisen können und daher einer ethischen Klärung und Reflexion bedürfen. Der Beitrag geht der Frage nach den Grundlagen dieser Annahmen und Urteile nach und argumentiert, dass für ihre Analyse eine strebensethische Perspektive auf Vorstellungen eines guten Lebens in der Zeit besonders geeignet (...) ist. Dazu geben wir zunächst einen kurzen Überblick über die empirische Forschung zu Einflussfaktoren bei der Abfassung gesundheitlicher Vorausverfügungen, insbesondere der Bedeutung von individuellen Wertvorstellungen und Lebensorientierungen. Im nächsten Schritt wenden wir uns vor diesem Hintergrund der Bewertung von Lebensqualität im Lebensverlauf zu. Wie sich dabei zeigt, verweisen die betreffenden Werturteile in mehrfacher Hinsicht auf umfassendere Vorstellungen eines guten Lebens und seines zeitlichen Verlaufs. Daher nehmen wir im Anschluss die Frage des guten Lebens in der Zeit in den Blick und arbeiten typologisierend unterschiedliche Vorstellungen heraus, an denen sich die Implikationen der zeitlichen Erstreckung und Verlaufsstruktur guten Lebens für gesundheitliche Vorausverfügungen deutlich machen lassen. Der Aufsatz formuliert so nicht nur wichtige Perspektiven für eine eingehendere empirische Erforschung evaluativer Aspekte der Abfassung gesundheitlicher Vorausverfügungen. Die Klärung der Bedeutung der Zeitstruktur guten Lebens für solche Verfügungen eröffnet auch einen theoretischen Zugang zu den grundlegenden strebensethischen Fragen, mit denen sich die Betroffenen innerhalb des Rahmens des sollensethisch gut begründeten, gesellschaftlich weithin anerkannten und gesetzlich abgesicherten Rechtes auf ein selbstbestimmtes Sterben konfrontiert sehen. (shrink)

BackgroundDementia care is essential to promote the well-being of patients but remains a difficult task prone to ethical issues. These issues include questions like whether manipulating a person with dementia is ethically permissible if it promotes her best interest or how to engage with a person who is unwilling to recognize that she has dementia. To help people living with dementia and their carers manage ethical issues in dementia care, we developed the CARE intervention. This is an intervention focused on (...) promoting the ethical self-efficacy of people living with dementia and carers, i.e., their confidence that they can manage ethical issues when they occur. The purpose of this paper is to explain and discuss how we have developed the CARE intervention to promote the ethical self-efficacy of people living with dementia, their family, and professional carers through a specific and, we believe, new use of literary texts.MethodsThe CARE intervention has been developed in two phases: First, we conducted a needs assessment of the occurrence of ethical issues in dementia care and the need for an intervention to support people living with dementia and their carers in managing such issues. Second, in a design phase, we developed the CARE intervention to meet identified needs.ResultsTo address identified ethical issues in dementia care we designed the CARE intervention as a workshop format where people living with dementia and carers can meet, discuss literary texts, and deliberate on how to solve such issues. The workshop is structured by the following elements: An agenda of ethical issues, a collection of literary cases exemplifying ethical issues, a moderator with an understanding of dementia care, and an overview of the ethical principles relevant to the discussion of ethical issues. >This workshop concept is operationalized in three applications tailored to meet the specific ethical issues of each of the study´s three target groups: people living with dementia and family carers, professional and family carers, and professional carers.ConclusionWe conclude the paper by stating that it is possible to develop an intervention that promotes the ethical self-efficacy of people living with dementia and family and professional carers. (shrink)

Volume 20, Issue 8, August 2020, Page 107-109.

We commonly explain the distinctive prudential and moral status of persons in terms of our mental capacities. I draw from recent work to argue that the common explanation is incomplete. I then develop a new explanation: We are ethically important because we are the object of a pattern of self-concern. I argue that the view solves moral problems posed by permissive ontologies, such as the recent personite problem.

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and consent; (...) the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

In this commentary, I critique three aspects of Emily Walsh's proposal to reduce the moral and legal weight of advance directives: (1) the ambiguity of its initial thesis, (2) its views about the ethics and legality of clinical practice, and (3) its interpretation and application of Ronald Dworkin’s account of advance directives and L.A. Paul's view on transformative experience. I also consider what Walsh’s proposal would mean for people facing the prospect of dementia. I conclude that our reasons to honor (...) many advance directives survive the move to a transformative experience framework. (shrink)

Commentary on Walsh, E. 2020. Cognitive transformation, dementia, and the moral weight of advance directives. The American Journal of Bioethics. 20(8): 54–64.

Volume 20, Issue 8, August 2020, Page 80-82.

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

Volume 20, Issue 8, August 2020, Page 83-85.

The human enhancement debate has over the last few decades been concerned with ethical issues in methods for improving the physical, cognitive, or emotive states of individual people, and of the human species as a whole. Arguments in favour of enhancement defend it as a paradigm of rationality, presenting it as a clear-eyed, logical defence of what we stand to gain from transcending the typical limits of our species. If these arguments are correct, it appears that adults should in principle (...) be able to make rational and informed decisions about enhancing themselves. In this paper, however, we suggest that a rational and informed choice to enhance oneself may in some cases be impossible. Drawing on L. A. Paul’s work on ‘transformative experience’, we argue that some enhancements—such as certain moral or cognitive modifications—may give rise to unbridgeable epistemic gaps in key domains. Importantly, such gaps could prove to be not merely contingently unbridgeable due to a lack of information at a given moment, but radically unbridgeable, making someone in a non-enhanced state inherently unable to conceive of what it would be like to be enhanced in a particular way. Where this experience is key to understanding what values are being pursued by the enhancement itself, it may prove impossible for a person to be sufficiently informed, and to make a rational decision about whether or not to enhance herself. This poses a challenge for human enhancement proponents in general, and for transhumanists in particular. (shrink)

Volume 20, Issue 8, August 2020, Page 96-98.

Volume 20, Issue 8, August 2020, Page 76-78.

Volume 20, Issue 8, August 2020, Page 85-87.

Volume 20, Issue 8, August 2020, Page 90-92.

When people are making certain medical decisions – especially potentially transformative ones – the specter of regret may color their choices. In this paper, I ask: can predicting that we will regret a decision in the future serve any justificatory role in our present decision-making? And if so, what role? While there are many pitfalls to such reasoning, I ultimately conclude that considering future retrospective emotions like regret in our decisionmaking can be both rational and authentic. Rather than indicating that (...) one is about to make a mistake or that there is some underlying value that one already cares about but is overlooking, the prediction that one will regret a decision in the future makes one confront how her present values and priorities may change as a result of her choice in ways she cannot presently anticipate. (shrink)

BackgroundThe terminal illness of late-stage Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last resort (...) to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding.AimThis article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives.ConclusionThis critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? (shrink)

Volume 20, Issue 8, August 2020, Page 78-79.

Volume 20, Issue 8, August 2020, Page 67-69.

Volume 20, Issue 8, August 2020, Page 72-75.

Hastings Center Report, Volume 52, Issue 1, Page 32-41, January/February 2022.

Volume 20, Issue 8, August 2020, Page 93-95.

Philosophers have debated whether the advance directives of Alzheimer’s patients should be enforced, even if patients seem content in their demented state. The debate raises deep questions about the nature of human autonomy and personal identity. But it tends to proceed on the assumption that the advance directive’s terms are clear, whereas in practice they are often vague or ambiguous, requiring the patient’s healthcare proxy to make difficult judgment calls. This practical wrinkle raises its own, distinct but related, philosophical question: (...) what criteria may the proxy bring to bear when making such interpretive judgments on which the patient’s life may depend? After defending a general policy of enforcing advance directives on normative (rather than metaphysical) grounds, I argue that when advance directives are vague, a patient’s proxy may permissibly make her own fresh evaluation of the patient’s life as a whole and, in so doing, consider how the patient’s character as a demented person contributes or fails to contribute to that life. (shrink)

We commonly explain the distinctive prudential and moral status of persons in terms of our mental capacities. I draw from recent work to argue that the common explanation is incomplete. I then develop a new explanation: We are ethically important because we are the object of a pattern of self-concern. I argue that the view solves moral problems posed by permissive ontologies, such as the recent personite problem.

The recent passing of Bill C-7 has placed Advance Requests for MAID on Canada’s legislative agenda. We discuss how ARMs may create ethical and practical challenges for Canadian medical practice.