This discussion aims to give a normative theoretical basis for a “best judgment” model of surrogate decision making rooted in a regulative ideal of love. Currently, there are two basic models of surrogate decision making for incompetent patients: the “substituted judgment” model and the “best interests” model. The former draws on the value of autonomy and responds with respect; the latter draws on the value of welfare and responds with beneficence. It can be difficult to determine which of these two (...) models is more appropriate for a given patient, and both approaches may seem inadequate for a surrogate who loves the patient. The proposed “best judgment” model effectively draws on the values incorporated in each of the traditional standards, but does so because these values are important to someone who loves a patient, since love responds to the patient as the specific person she is. (shrink)

Two clusters of essays in this issue of The Journal of Medicine and Philosophy provide a critical gaze through which to explore central moral, phenomenological, ontological, and political concerns regarding human moral agency and personal responsibility. The first cluster challenges common assumptions in bioethics regarding the voluntariness of human actions. The second set turns the debate towards morally responsible choice within the requirements of distributive justice. The force of their collective analysis leaves us with a well-founded basis critically to approach (...) any account of bioethics or health policy that is insufficiently attentive to the central challenges of human freedom and responsible free choice. (shrink)

Often lurking below the surface of many clinical ethical issues are questions regarding background metaphysical, epistemological, meta-ethical, and political beliefs. In this issue, authors critically examine the effects of background beliefs on conscientious objection, explore ethical issues through the lenses of particular theoretical approaches like pragmatism and intersectional theory, rigorously explore the basic concepts at play within the patient safety movement, offer new theoretical approaches to old problems involving decision making for patients with dementia, explicate and explore the problems and (...) promises of machine learning in medicine, and offer us a non-rights-based argument for the just distribution of healthcare resources. (shrink)

According to a standard account of patient decision-making capacity, patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical c...

Children’s preferences about medical treatment—like the preferences of other patients—hold moral weight in decision-making that is independent of considerations of autonomy or best interests. In light of this understanding of the moral value of patient preferences, the American Academy of Pediatrics could strengthen the ethical foundation for its formal guidance on pediatric assent.

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical course of (...) dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

It is commonly believed thatgeriatric medicine generates a distinctive setof ethical problems. Implicated are such issuesas resource allocation, competence and consent,advance directives, medical futility anddeliberate death. It is also argued that itwould be unjust to allow the elderly to competewith younger populations for expensive andscarce health care resources because theelderly “have already lived,” and that treatingthem the same as these other populations woulddiminish the available resources unfairly,prolong a life of inevitably failing health andresult in increased health care expenditures.In fact, however, (...) this perception of ethicaluniqueness is mistaken. Differences in medicalconditions, demographics and aetiology shouldnot be allowed to obscure the fact that ethicalissues in geriatric medicine are essentiallythe same as those faced in any other area ofhealth care, and that the solutions that areadopted in the geriatric context must beconsistent with the ethical principles that arefollowed elsewhere. The paper argues that theroot of the mistaken perception lies in theabandonment of the Hippocratic mandate ofmedicine and in an unreflective adherence tothe belief that medical advances are inevitablybeneficial. It is suggested that a return topatient-centred medicine and the use of ethicsimpact analyses before introducing medicaladvances may be ethically appropriate. (shrink)

Clowns seem suspect when it comes to respect. The combination of clowning and people with dementia may seem especially suspicious. In this argument, I take potential concerns about clowning in dementia care as an opportunity to explore the meaning of a respectful approach of people with dementia. Our word ‘respect’ is derived from the Latin respiciō, meaning ‘looking back’ or ‘seeing again’, as well as ‘looking after’ or ‘having regard’ for someone or something. I build upon this double meaning of (...) respiciō by examining how simultaneously we look to and after people with dementia. I do so empirically by studying how miMakkus clowns in their practice learn to look with new eyes to people and things around them. I call this clown’s view and differentiate it from the predominant way of observing people in dementia care. I argue that respiciō comes in two guises, each of which merges specific forms of looking to and looking after the other. By making conventional, solidified ways of seeing the other fluid again, clowns remind us of the value that comes with a veiled way of paying respect to people with dementia. (shrink)

The aim of this article is to investigate how life in Norwegian nursing homes may affect experiences of dignity among persons with dementia. The study had a qualitative design and used a phenomenological and hermeneutic approach. Participant observation in two nursing home units was combined with qualitative interviews with five residents living in these units. The study took place between March and December 2010. The residents feel that their freedom is restricted, and they describe feelings of homesickness. They also experience (...) that they are not being seen and heard as individual autonomous persons. This lack of freedom, experiences of homesickness and feelings of not being confirmed and respected as individual autonomous persons may be a threat to their personal dignity. In order to protect and enforce the dignity of persons with dementia living in nursing home, we should confirm them as whole and as individual persons, and we should try to make the nursing homes less institutional and more home like. (shrink)

Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to be treated. I put (...) forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented. (shrink)

This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sexual Relations,” in the May‐June 2023 issue of the Hastings Center Report. In the article, Director sets out a set of conditions for sexual consent after one partner in a committed, long‐term relationship develops dementia. While we share Director's view that dementia patients should not be categorically cut off from sexual intimacy, we caution against the use of his approach as a rigid test for allowing sexual activity. Director's (...) analysis does not address the full range of plausibly permissible sexual relationships, which is unfortunate, as intimacy has consistently been linked to physical and psychological well‐being. Moreover, because decisions about sex often carry moral and emotional overtones, we propose that a dementia patient's prior values should sometimes be considered by caregivers in a measured way. (shrink)

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person’s suffering untreatable? The (...) use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia. However, in the Netherlands—the only country in which this practice is legal—the experiences of patients, doctors, and relatives have been far from satisfactory.Our paper analyses this complex ethical challenge from a Dignity-Enhancing Care approach, starting from the Dutch experiences with AED as a case. We first consider the lived experiences of the different stakeholders, seeking out a dialogical-interpretative understanding of care. We aim to promote human dignity as a normative standard for end-of-life care practices. Three concrete proposals are then presented in which this approach can be operationalised in order to deal respectfully with the end-of-life choices of persons with dementia. (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs (...) of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (shrink)

Does the fact that humans are vulnerable, needy and dependent beings play an important role in Kantian ethics? It is sometimes claimed that it cannot and does not. I argue that it can and does. I distinguish between broad (all persons are vulnerable) and narrow (only some persons are vulnerable) senses of vulnerability, and explain the role of vulnerability in both senses in Kantian ethics. The basis of this argument is to show that the core normative focus of Kantian ethics (...) is on the dignity that human beings have in virtue of their capacity for rational agency. This implies that the empirical conditions under which human beings can acquire, sustain, exercise, and develop their rational capacities are of core moral importance in Kantian ethics. This explains why human vulnerabilities, including the vulnerability of human bodies, are important in Kantian ethics, since rational capacities in human agents (and the bodies those rational capacities depend upon) are highly vulnerable in all persons (vulnerability in the broad sense) and especially vulnerable in some sub-groups of persons (vulnerability in the narrow sense). (shrink)