Dementia

The capacity to designate a surrogate is not simply another kind of medical decision-making capacity. A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC (...) for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases. That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions. (shrink)

We argue that contemporary conceptualizations of “persons” have failed to achieve the moral goals of “person-centred care” (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived (...) experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood’s original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment. (shrink)

In this article, we focus on the definition and application of the sliding scale of capacity. We show that the current interpretations of the sliding scale confound distinct features of the medical decision, such as its urgency, its severity, or its complexity, that do not always covary.We propose that the threshold for assessing capacity should be adjusted based solely on the cognitive complexity of the decision at hand. We further suggest that the complexity of a decision should be identified based (...) on a patient’s particular cognitive deficits. We utilize the current research on the types of deficits that characterize amnestic dementias and examine which types of medical decisions might be most complex for patients with that type of dementia. We conclude that applying the sliding scale based on individualized judgments of cognitive complexity will improve accuracy of assessment of capacity and enable capable patients to participate in medical decision making. (shrink)

The literature on epistemic injustice has thus far confined the concept of testimonial injustice to speech expressions such as inquiring, discussing, deliberating, and, above all, telling. I propose that it is time to broaden the horizons of testimonial injustice to include a wider range of expressions. Controversially, the form of communication I have in mind is non-verbal expression. Non-verbal expression is a vital, though often overlooked, form of communication, particularly for people who have certain neurocognitive disorders. Dependency upon non-verbal expression (...) is a common feature of some forms of neurocognitive disorders such as ‘intellectual disabilities’, autism and late-stage dementia. According to the narrow definition of testimonial injustice currently championed in the literature, people who express non-verbally are exempt from testimonial injustice. However, when we consider cases where meaningful communications from non-verbal people are dismissed or ignored in virtue of identity prejudice, there seems to be a distinct testimonial harm at play. Using late-stage dementia as a case study, I argue that the definition of testimonial injustice should be expanded to include all communicative practices, whether verbal or non-verbal, to encompass the epistemic harms inflicted upon some of the most marginalised in our society. (shrink)

When a person with dementia (PwD) makes a specific request or behaves in a particular way that is inappropriate or dangerous and based on a false understanding of reality, there is a particular technique that caregivers may use to try and manage the situation. The technique is known as ‘diversion’ and it works by affirming the false beliefs and behaviour of a PwD and creating the false impression that their specific request will be fulfilled. It may take the form of (...) an explicit lie or any other communicative response or provision of care that either explicitly or tacitly affirms their false beliefs. It therefore raises the same kind of ethical issues as when lying (or not telling the truth) is done for so called ‘therapeutic’ purposes. The main type of argument used to justify this so called ‘therapeutic lying’ is that it is primarily aimed at benefiting the patient rather than the liar. The same kind of argument can be made for diversion, which is that it is primarily aimed at benefiting the PwD by aiming to ensure their safety and well-being. I argue that insofar as diversion is practiced in this way, it is consistent with the idea of ‘person-centred care’ (PCC) and can be ethically justified on those grounds. Therefore, however, we must be wary of situations where diversion is not practiced in this way, where it is primarily aimed at benefiting caregivers or care providers, and thus inconsistent with PCC. (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)

Wie jedes Krankenhaus hat Charité ihre Geschichte, die mit dem Erlaß des preußischen Königs Friedrich I. vom 14. November 1709 zur Gründung von Lazareth-Häusern anfing, um der Ausbreitung der Pest entgegenzuwirken, wozu es allerdings in Berlin nie gekommen ist. Am 9. Januar 1727 verfügte König Friedrich Wilhelm I. die Umwandlung des vor dem Spandowischen Tor errichteten Lazareth in ein Hospital und nannte es „das Haus die Charité“ nach dem Vorbild von Hôpital de la Charité in Paris. -/- Das Wort und (...) der Begriff Charité ist wesentlich älter als das Krankenhaus. Das Französische charité ist äquivalent dem Englischen charity und dem Deutschen Barmherzigkeit, während ihre Ursprünge im Griechischen zu finden sind: χάρις bedeutet Gnade, Gunst, χαριτόω Gnade oder Gunst zeigen oder empfangen, favorisieren oder favorisiert werden, gnädig oder begnadet sein. Das Krankenhaus ist ein Ort der Gnade, welche den Kranken und Bedürftigen zusteht aufgrund allgemeiner Verpflichtung, seinen Nächsten so zu lieben wie sich selbst. Die Gunst und die Gnade zu erweisen heißt auch, sich zu erbarmen und mitleidig sein, eigenes Herz für fremdes Leid zu offnen. -/- Seit ihrer Gründung weichte Charité von diesem Grundgedanke mehrmals ab, was bisher in ihrer Geschichtsschreibung mehr oder weniger wahrheitsgetreu festgehalten wurde. Dieser Tradition des Festhaltens und der Wiedergabe der Wahrheit bin ich verpflichtet, weil offizielle Geschichtsschreibung erneut beginnt, von der Realität abzuweichen und die Tatsachen zu leugnen, die sowohl unzweifelhaft sind als auch unzweifelhaft würdig sind, erzählt zu werden, weil es dabei um die Frage des Auftrags der Charité geht. -/- Charité wurde gegründet, um das Unheil abzuwenden, dennoch war ihre Geschichte keine Heilsgeschichte, wie ich bereits feststellte. Das Unheil setzte sich im 21. Jahrhundert fort, was ich zu unterbinden suche. Einziges Heilmittel dagegen ist die Wahrheit, daran besteht kein Zweifel, und der Weg, um die Wahrheit zu erkennen, ist die Barmherzigkeit. (shrink)

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)

In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long-term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue there is compelling reason to endorse (...) the following thesis: -/- Prior Consent Thesis: D, when competent, can give valid prior consent to sex with her competent partner (C) that will take place after she has dementia, assuming that D is the same person as she was when she gave prior consent, meaning that, if D, when competent, gave prior consent to sex with C, then C may permissibly have sex with D. In section I, I explain both the background and the existing literature on this issue. In section II, I outline relevant stipulations about the kinds of cases I will be examining. In section III, I defend the Prior Consent Thesis. And, in section IV, I address objections to the Prior Consent Thesis. (shrink)

This polemical note looks at the ethical issue of providing artificial nutrition and hydration to patients with advanced dementia from the perspective of an Aristotelian and naturalist ethics. I argue that this issue may be considered in terms of the Aristotelian notion of eudaimonia, well-being. I present a number of facts about the conditions of human life that contribute to eudaimonia. In addition, I present a number of facts about advanced dementia as well as clarify the goals of medicine. From (...) these facts, I argue that we are not ethically obligated to provide ANH to this class of patients. (shrink)

Dementia will soon be ranked as the world’s largest economy. At present, it ranges from the 16th to 18th place, with countries such as Indonesia, the Netherlands, and Turkey. Dementia is not only a financial challenge, but also a philosophical one. It provokes a paradigm shift in the traditional view of healthcare and expands the classic concepts of human personhood and autonomy. A promising response to these challenges is the idea of cooperative solidarity. Cooperative solidarity, contrary to its ‘humanitarian’ version, (...) promotes spontaneous teamwork and individual initiative. It obliges us not only to help 'the suffering, the troubled and the disadvantaged’, but above all to support those who already do so for spontaneous moral or affective reasons. In the field of dementia study, solidary initiatives are described within the framework of supportive care. (shrink)

Patients suffering from advanced dementia present ethicists and caregivers with a difficult issue: we do not know how they feel or how they want to be treated, and they have no way of telling us. We do not know, therefore, whether we ought to prolong their lives by providing them with nutrition and hydration, or whether we should not provide them with food and water and let them die. Since providing food and water to patients is considered to be basic (...) care that is morally required, it is usually only the provision of nutrition and hydration by artificial means that is considered to require ethical justification. Building on what I call a virtue-based conception of autonomy, I argue that, at least for some patients suffering from advanced dementia, even providing food and liquid by hand is morally wrong. (shrink)

A high level of confidence in the identity of individuals is required to let them die as ordered by an advance directive. Thus, if we are animalists, then we should lack the confidence required to apply lethal advance directives to the cheerfully demented, or so I argue. In short, there is consensus among animalists that the best way to avoid serious objections to their account is to adopt an ontology that denies the existence of brains, hands, tables, chairs, iced-tea, and (...) lemonade. The adoption of such an ontology reduces the justificatory force of commonsense, which is key in arguing that we are animals and that we persist as long as we are biologically alive. With this loss of justification comes the loss of a high level of confidence that Quinn-pre-dementia’s lethal advanced directive applies to Quinn-post-dementia, via identity. If we do not have a high level of confidence that Quinn-pre-dementia’s advanced directive applies to Quinn-post- dementia, then it is not enough (on its own) to let Quinn-post-dementia die. (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing the impact (...) of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

Man suffers from a very particular fate, namely that of being besieged by questions which he cannot answer and cannot ignore either. The ability to pose questions like these is a key characteristic of the fundamental existential situation of mankind. Every person must find his or her own particular method of coping with such questions. This makes up a significant part of the human maturing process. People with dementia, having already found their personal solution to cope with the problem of (...) these unanswerable questions, radically stumble into this existential situation once again. The problem of this repetition is that the people with dementia can only make limited use, if indeed any use at all, of their previously successful biographical strategies. The drama of human existence as such thus repeats itself within a person with dementia. We must recognise the seriousness of this task. We thus must support people with dementia in coping existentially with this renewed task in the best possible way. The existential dignity of this task is no different from that of a young person. This insight is very important for the care of patients: people with dementia should be recognised as a people in an existential situation. (shrink)

Philosophers concerned with what would be good for a person sometimes consider a person’s past desires. Indeed, some theorists have argued by appeal to past desires that it is in the best interests of certain dementia patients to die. I reject this conclusion. I consider three different ways one might appeal to a person’s past desires in arguing for conclusions about the good of such patients, finding flaws with each. Of the views I reject, the most interesting one is the (...) view that prudential value is, at least partly, concerned with the shape of a life as a whole. (shrink)

During the late 20th century numerical rating scales became central to the diagnosis of dementia and helped transform attitudes about its causes and prevalence. Concentrating largely on the development and use of the Blessed Dementia Scale, I argue that rating scales served professional ends during the 1960s and 1970s. They helped old age psychiatrists establish jurisdiction over conditions such as dementia and present their field as a vital component of the welfare state, where they argued that ‘reliable modes of diagnosis’ (...) were vital to the allocation of resources. I show how these arguments appealed to politicians, funding bodies and patient groups, who agreed that dementia was a distinct disease and claimed research on its causes and prevention should be designated ‘top priority’. But I also show that worries about the replacement of clinical acumen with technical and depersonalized methods, which could conceivably be applied by anyone, led psychiatrists to stress that rating scales had their limits and could be used only by trained experts. (shrink)

America is aging. But even more striking than the rise in the proportion of the population over age 65 is the unprecedented number of individuals who are living into their eighties and nineties. While many people remain robust well into advanced age, the dramatic increase in the number of the oldest old has brought with it an epidemic of Alzheimer’s disease and other dementias. Dementia is a highly prevalent condition — currently 5.4 million Americans have Alzheimer’s disease, a number which (...) may rise to 16 million by 2050 if there is no breakthrough in the prevention or treatment of the disease — but it disproportionately affects those over age 85, striking between one-third and one-half of this cohort. Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. (shrink)