Behavioural variant frontotemporal dementia (bvFTD) is characterized by an absence of obvious cognitive impairment and presence of symptoms such as disinhibition, social inappropriateness, personality changes, hyper-sexuality, and hyper-orality. Affected individuals do not feel concerned enough about their actions to be deterred from violating social norms, and their antisocial behaviours are most likely caused by the neurodegenerative processes in the frontal and anterior temporal lobes. BvFTD patients present a challenge for the traditional notion of autonomy and the medical and criminal justice (...) systems. Antisocial behaviour is often the earliest recognized manifestation of bvFTD. Given that the symptoms are not specific and that atrophy of the frontal lobes is only observable with structural neuroimaging in the later stages of the disease, it is hard to ascertain their autonomy. Recently proposed re-conceptualizations of autonomy (Dworkin’s, Jaworska’s, and Dubljević’s) can, however, be sufficiently redefined to provide explicit rules and offer nuanced guidance in such cases. A combination of notions of autonomy gives the most nuanced guidance with three modifications: 1) including socio-moral judgement in the notion of “normal cognitive competence,” 2) excluding in-principle un-endorsable ideals from the notion of “capacity to value,” and 3) redefining ideal-typical degrees of compulsion (mild, severe, and total). (shrink)

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy (...) and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (shrink)

Shavelson and colleagues (2023) describe how medical aid-in-dying laws in the United States prohibit assistance in administering aid-in-dying medication. This prohibition distinguishes aid in dying...

It has often been claimed that orthodox thinking about personal identity undermines the moral authority of advance directives in dementia by implying that the signer of the directive is numerically different from the severely demented patient. This is the ‘identity problem'. I introduce the problem, outline some well‐known solutions, and explain why they might be deemed unattractive. I then propose an alternative solution. It promises to be compatible with orthodox thinking about personal identity. I discuss three ways in which it (...) might be challenged and find that none is convincing. Personal identity is no bar to the moral authority of advance directives. (shrink)

Viele Menschen halten Patientenverfügungen für ein geeignetes Mittel, um selbstbestimmt zu entscheiden, wie mit ihnen im Fall schwerer Demenz umgegangen werden soll. Die meisten Bioethiker stimmen ihnen zu: Demenzverfügungen seien Ausdruck der „verlängerten Autonomie“ der Patientin. Doch ob sie recht haben, ist unklar. Dem viel beachteten Identitätseinwand zufolge sind die Ausstellerin der Verfügung und ihre schwer demente Nachfolgerin numerisch verschieden: Sie sind zwei und nicht eins. Wenn das stimmt, kann die Ausstellerin nicht verfügen, wie mit ihr im Falle schwerer Demenz (...) umgegangen werden soll. Die Demenzverfügung ist ungültig. In meinem Aufsatz möchte ich eine neue Replik auf diesen Einwand vorstellen. Ihr Ansatzpunkt ist der menschliche Organismus, den wir sehen, wenn wir in den Spiegel blicken. Er kann schwer dement werden, und auch er hat die Patientenverfügung unterschrieben. Warum sollte sie dann ungültig sein? Auf den ersten Blick hat diese Replik eine Reihe von Vorzügen. Insbesondere akzeptiert sie die populären Annahmen, auf denen der Identitätseinwand basiert. Bei näherem Hinsehen zeigen sich jedoch Probleme, die so gravierend sind, dass wir von ihr Abstand nehmen sollten. (shrink)

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

By issuing an advance treatment directive, an autonomous person can formally express what kinds of treatment she wishes and does not wish to receive in case she becomes ill or injured and unable to autonomously decide about her treatment. While many jurisdictions and medical associations endorse them, advance treatment directives have also been criticized. According to an important criticism, when a person irreversibly loses her autonomy what she formerly autonomously desired ceases to be of importance in deciding about her treatment. (...) The medical ethical debate regarding different possible ways of solving the problem on which the criticism is based has grown exceedingly intricate. Instead of assessing the developments made in the debate so far, I present a thought experiment—built around a suicide case—which suggests that the problem is not as intractable as it has generally been deemed to be. (shrink)

Aid‐in‐dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision‐making capacity would be invalid. However, many people are more concerned about avoiding living into (...) severe dementia for years—a time when they will lack decision‐making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life.Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full‐time care.”A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life‐sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves. (shrink)

A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these—epistemic indeterminacy and metaphysical indeterminacy—should be addressed in laws/policies regarding advance directives for euthanasia.

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...) medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (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)

Authorising euthanasia and assisted suicide with advance euthanasia directives is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer’s disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch euthanasia law (...) was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs. (shrink)

Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide?In fact the ethical and legal basis for (...) VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death. (shrink)

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

The case of Mrs A is a provocative example of euthanasia by advance directive to avoid increasingly severe dementia. It is also a ‘perfect storm’ of a disturbing case, revealing both the challenges that can arise with advance euthanasia directives generally and particular issues in the Dutch procedures. Kim, Miller and Dresser have done a distinct service to bioethics in detailing the case, in explaining the basis of the regional euthanasia review committee reprimand of the administering geriatrician and in highlighting (...) some significant deficiencies in Dutch procedures.1 Many readers, after encountering the case, may find themselves sceptical that AEDs can be an ethically viable vehicle for avoiding living into severe dementia. I will argue that caution and care, not resistance to AEDs for dementia, is in order. Real dilemmas of implementation are inherent in advance directives, to be sure, dilemmas that can be aggravated by a patient’s dementia. Yet much can be done in writing an AED to make its implementation in dementia less problematic, and the Dutch emphasis on intolerable suffering as a necessary condition for euthanasia is not the appropriate legal framework. The difficulties in the case begin with the directive itself. Any advance directive, whether for refusing lifesaving treatment or for physician-assisted death, needs to be clear about what is and is not to happen and when. At first Mrs A’s directive seems to provide a trigger point: ‘I want to make use of the legal right to … euthanasia when I am still at all mentally competent and am no longer able to live at home with my husband. I absolutely do not want to be placed in an institution for elderly dementia patients’. In a revision added a year before her death, the time had become ‘whenever I think the time …. (shrink)

Competent patients have considerable legal authority to control life‐and‐death care. They may refuse medical life support, including medically delivered food and fluids. Even when they are not in need of any life‐saving care, they may expedite death by refusing food and water by mouth—voluntarily stopping eating and drinking, or VSED. Neither right is limited to terminal illness. In addition, in four U.S. states, competent patients, if terminally ill, may obtain lethal drugs for aid‐in‐dying.For people who have dementia and are no (...) longer competent, however, control over the end of life is much less extensive. They may have written a clear advance directive for refusing life‐saving care in specified circumstances yet subsequently find themselves living for years in severe dementia with no need for life‐saving care that could be refused. Chronic progressive dementia is not itself life threatening until its very final stage. Even in jurisdictions that permit active aid‐in‐dying, individuals with advanced dementia are not eligible; they lack the required current competence, and they are seldom deemed terminally ill. As for the right to VSED, its very name—voluntarily stopping eating and drinking—is seen as excluding noncompetent persons.One option for ensuring that one does not live years in severe dementia is to use advance directives to withhold food and water by mouth. The driving element behind VSED is that forcing people to ingest food is as objectionable an intrusion on bodily integrity, privacy, and liberty as imposing unwanted medical treatment. Thus, if incompetent people do not lose their rights to refuse life‐saving treatment, and if people when competent have just as strong a right to VSED as they do to refuse life‐saving treatment, then people do not lose their right to VSED when incompetent either. They only have to exercise it by AD. (shrink)

Typical philosophical discussions of physician-assisted death have focused on whether the practice can be permissible. We address a different question: assuming that pad can be morally permissible, how far does that permission extend? We will argue that granting requests for pad may be permissible even when the pad recipient can no longer speak for themselves. In particular, we argue against the ‘competency requirement’ that constrains pad-eligibility to presently-competent patients in most countries that have legalized pad. We think pad on terminally (...) ill, incapacitated patients can be morally permissible in cases where advance directives or suitable surrogate decision-makers are available, and should be legally permissible in such cases as well. We argue that this view should be accepted on pain of inconsistency: by allowing surrogate decision-makers to request withdrawal of life-sustaining care on behalf of patients and by allowing patients to request pad, we rule out any plausible justification for imposing a competency requirement on pad. (shrink)

According to Kant’s ethics, at least on one common interpretation, persons have a special worth or dignity that demands respect. But personhood is not coextensive with human life; for example, individuals can live in severe dementia after losing the capacities constitutive of personhood. Some philosophers, including David Velleman and Dennis Cooley, have suggested that individuals living after the loss of their personhood might offend against the Kantian dignity the individuals once possessed. Cooley has even argued that it is morally required (...) on Kantian grounds for those who realize that they will lose their personhood as a result of dementia (e.g. Alzheimer’s) to hasten their deaths (e.g. commit suicide). This article specifies circumstances in which post-personhood living might indeed involve an affront to the Kantian dignity of a person who once was. However, the article contends, Kant implies that it is neither morally required nor even morally permissible for someone in an early stage of Alzheimer’s to hasten their death to avoid such an affront, even if they have autonomously chosen to do so. The article adds an ethical perspective to debate on physician-assisted dying, in particular on the moral permissibility of the soon-to-be-demented ending their lives. (shrink)

This study aims to identify the ethical challenges in the process of product marketing. It conducted a bibliometric study to evaluate the major ethical concerns in the area of product marketing. The data for the current study was extracted using the Scopus database. The study uses VOSviewer and Biblioshiny-bibliometrix to analyze the data. The results revealed that in the twenty-first century, ethical concerns and research related to pharmaceutical marketing, consumption behavior, and sustainability have significantly grown and are emerging as important (...) issues. The study is novel in its approach and develops a theoretical model to know ethical issues related to product marketing with multidimensional process (i.e., identification, search strategy, and analysis) for a long-term sustainable business success. By this study, the academicians and researchers will focus greater attention on the rapidly developing human-techno-centric world to fulfill the organizations’ service promises. The study contributes to the marketing ethics literature, particularly to the literature related to ethical issues in product marketing. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (shrink)

Ronald Dworkin introduced the example of Margo, who was so severely demented that she could not recognise any family or friends, and could not remember anything of her life. At the same time, however, she seemed full of childish delight. Dworkin also imagines that, before her dementia, Margo signed an advance refusal of life-saving treatment. Now severely demented, she develops pneumonia, easy to treat, but lethal if untreated. Dworkin argues that the advance refusal ought to be heeded and Margo be (...) allowed to die of that pneumonia, on the basis that the prior refusal expresses her true wishes. In this paper I want to challenge Dworkin’s understanding of identity and his conclusion about advance refusals, and I develop my argument in two directions. First, I argue that the demented Margo is not some ‘lesser’ version of the ‘true’ Margo, but instead that the present Margo’s wishes should take precedence over those of the past Margo, on the grounds that all of us are entitled to change our minds. Second, I argue for a stronger role for friends and family members in sustaining the demented Margo’s identity through her years of decline. Based on this, I argue for a presumption against the advance refusal, but I allow that in extreme cases, a friend might have the authority to demand that it be heeded. (shrink)

Some of the concerns that have been raised in connection to the use of advance directives are of the epistemic variety. Such concerns highlight the possibility that adhering to an advance directive may conflict with what the author of the directive actually wants at the time of treatment. However, at least one objection to the employment of advance directives is metaphysical in nature. The objection to be discussed here, first formulated by Rebecca Dresser and labeled by Allen Buchanan as the (...) slavery argument and David DeGrazia the someone else problem, aims to undermine the legitimacy of certain uses of advance directives by concluding that such uses rest upon an incorrect assumption about the identity over time of those ostensibly governed by the directives. There have been numerous attempts to respond to this objection. This paper aims to assess two strategies that have been pursued to cope with the problem. (shrink)

An attempt to reduce disability discrimination can do more harm than the ostensible discrimination itself. Such is the case with Shavelson et al.’s (2023) argument for equal access to medical aid i...

ZusammenfassungPatientenverfügungen für spätere Zustände schwerer kognitiver Beeinträchtigungen, wie sie für Spätphasen der Demenz typisch sind, stoßen auf weitergehende Vorbehalte als Patientenverfügungen für anderweitige Zustände eingeschränkter Einwilligungsfähigkeit. Einer der Gründe dafür scheinen die ethischen und psychologischen Konflikte im Gefolge von Patientenverfügungen zu sein, mit denen Patienten in gesunden Tagen für bestimmte Phasen der Erkrankung die Nichtbehandlung interkurrenter Erkrankungen oder die Unterlassung künstlicher Ernährung verfügt haben, während sich unter den in der Patientenverfügung gemeinten Bedingungen keine Anzeichen finden, dass sie unter ihrer Situation (...) leiden. Der Beitrag argumentiert für diese Situation für eine „gemischte“ ethische Strategie: Patientenverfügungen im rechtlichen Sinne sollten insbesondere dann, wenn sie im Rahmen eines Advance Care Planning erstellt sind, befolgt werden, um zu verhindern, dass den Vorausverfügenden das Vertrauen in die spätere Befolgung ihres Wunsches nach Abbruch oder Nichtaufnahme medizinischer Behandlungen genommen wird. Dagegen sollten darüber hinausgehende „Pflegeverfügungen“ ohne rechtlich verbindlichen Status nur in Fällen beachtet werden, in denen zwischen vorausverfügtem und „natürlichem“ Willen Konkordanz besteht. (shrink)

If you developed Alzheimer disease, would you want to go all the way to the end of what might be a decade‐long course? Some would; some wouldn't. Options open to those who choose to die sooner are often inadequate. Do‐not‐resuscitate orders and advance directives depend on others' cooperation. Preemptive suicide may mean giving up years of life one would count as good. Do‐it‐yourself methods can fail. What we now ask of family and clinicians caring for persons with dementia, and of (...) patients given no better option than to go on with lives they may not want, is unacceptable. To explore how one might better control one's own dying and avoid burdening others with overwhelming care and morally painful choices, we propose a thought experiment: an advance directive implant that would enable persons with early dementia, while competent, to arrange their own deaths without the subsequent intervention of anyone else. (shrink)

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the Regional Review Committees (...) for Termination of Life on Request and Euthanasia and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia. (shrink)