This paper argues that the concept of best interests in the context of clinical decisions draws on concepts rooted in the philosophical discipline of axiology. Reflection on the philosophical origins enables a distinction to be drawn between those interests related to clinical goals and those global interests that are axiological in nature. The implication of this distinction is most clearly seen in the context of end of life decisions and it is argued here that greater weight ought to be given (...) to the positive requests, and not merely competent refusals, of patients at the end of life. (shrink)

The rapidly expanding aging population presents an urgent global challenge cutting through just about every dimension of worldly life, including the social, political, cultural, and economic. Developing innovations in health and assistive technology (AT) are poised to support effective and sustainable health care in the face of this challenge, yet there is scant (but growing) discussion of the ethical issues surrounding AT for older persons with dementia. Demands for ethical frameworks that can respond to frontline dilemmas regarding AT development and (...) provision, and how the needs of aging persons themselves are defined throughout this development process, are increasing. This article suggests that fulfilling the promises of AT to provide effective and ethically informed solutions may demand shifting away from standard bioethical analyses that centralize the principle of respect for autonomy. An autonomy-centric paradigm is dubiously equipped to theorize the foundational ethical issues in dementia care and to effectively guide AT development and implementation. An agency-centered approach to dementia care, which could engage more adaptively with the perspectives and choices of older persons themselves while offering strong support to AT research and stakeholders, may offer an attractive alternative. (shrink)

Background: Today, many healthcare or dementia organizations, clinicians, and companies emphasize the importance of detection of Alzheimer’s disease in an early phase. This idea has gained considerable momentum due to the development of biomarkers, the recent FDA and EMA approval of three amyloid tracers, and the failure of a number of recent therapeutic trials conducted in the early dementia phase. On the one hand, an early etiological diagnosis can lead to early and more efficacious intervention. On the other hand, it (...) is questioned how early an etiological diagnosis is beneficial to the patient. Here we consider ethical issues related to the process of biomarker testing and the impact on the diagnostic disclosure to patients with mild cognitive impairment due to prodromal Alzheimer’s disease. Methods: A systematic review of the theoretical bioethics literature was performed by using electronic databases. The review was limited to articles published in English between 2003 and 2016. Results: A total of twenty articles were included in our effort to make an analysis of the ethical challenges. One of the biggest challenges was the uncertainty and the predictive value of the biomarker-based diagnosis where patients can be amyloid positive without full certainty whether or when they will develop symptomatic decline due to Alzheimer’s disease. Another challenge was the tension between the right to know versus the wish not to know, the limited efficacy of currently available treatment options, and the opportunities and consequences after receiving such an early diagnosis. Conclusion: Based on the results and the additional comments in the discussion, several unanswered questions emerged. Therefore, careful consideration of all these ethical issues is required before the disclosure of a biomarker-based diagnosis to the patient with mild cognitive impairment due to Alzheimer’s disease. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six (...) interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a person's (...) decision‐making capacity. In this article, we array various approaches to decision‐making along a continuum of interdependence. An appreciation of this continuum can empower patients and elucidate ethical challenges that arise when people transition between different kinds of interdependence across the life span. (shrink)

The clinical relationship has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch’s social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the intimate involvement of family (...) fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward. (shrink)

Advance patient directives are various forms of anticipatory medical directives made by competent individuals for the eventuality of future incompetence. They are therefore appropriate instruments for competent patients in the early stage of Alzheimer's disease to document their self-determined will in the advanced stages of dementia. Theoretical objections have been expressed against the concept of advance patient directives (problems of authenticity and identity) which, however, cannot negate the fundamental moral authority of advance patient directives. Therefore, patients, family members, and physicians (...) should make use of the appropriate form of advance directive as part of common treatment and care planning. Advance directives, when utilized intelligently, represent appropriate instruments for shared decision-making by patient, family members and physician. They should be utilized to a greater extent, particularly for the treatment planning of demented patients. (shrink)

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

In this paper I consider, in connection with dementia, two views of the person. One view of the person is derived from Locke and Parfit. This tends to regard the person solely in terms of psychological states and his/her connections. The second view of the person is derived from a variety of thinkers. I have called it the situated-embodied-agent view of the person. This view, I suggest, more readily squares with the reality of clinical experience. It regards the person as (...) embedded in a history and culture. The human person is also an embodied agent. I contend that this view encourages a more appropriate approach towards the ethical issues that arise in dementia and towards people with dementia. (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)

This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimer's disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called (...) early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of Alzheimer's disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patient's perspective with regard to medical treatment and care-giving in dementia, including end-of-life care. (shrink)

This paper revisits Ronald Dworkin’s influential position that a person’s advance directive for future health care and medical treatment retains its moral authority beyond the onset of dementia, even when respecting this authority involves foreshortening the life of someone who is happy and content and who no longer remembers or identifies with instructions included within the advance directive. The analysis distils a eudaimonist perspective from Dworkin’s argument and traces variations of this perspective in further arguments for the moral authority of (...) advance directives by other authors. It then critiques a feature of the eudaimonist perspectives within these arguments—namely, the position that dementia has a retroactive negative impact on what a person has previously valued—and challenges the commonly held assumption underlying them that a person’s life and well-being have relatively low value beyond the onset of dementia. Although advance directives have moral authority as a means of guiding one’s future health care, accounts that dismiss the value of the lives and well-being of people living with dementia should be questioned to the extent that such accounts are used to support the moral authority of advance directives stipulating measures to foreshorten individuals’ lives. (shrink)

Is a theory of identity necessary for bioethics? In this paper I investigate that question starting from an empirical explication of identity based on post-genomics, in particular on epigenetics. After analysing whether the classic problems a theory of identity has to cope with also affect the proposed epigenetic account of identity, I deal with three topics to offer an insight on the relationship between that account and bioethics.

The law of England and Wales provides that an adult with capacity has the right to refuse medical treatment both contemporaneously and in an advance refusal. Legislation separates general advance refusals of treatment from advance refusals of life-sustaining treatment. The law, outlined in ss.24 to 26 of the Mental Capacity Act 2005, is stricter for creation of the latter. These sections brought with them a new age of interests by purporting to elevate individual autonomy as the primary concern. Beginning with (...) the classical tale of Odysseus and a general discussion of the value to be found in a law seeking to preserve individual autonomy, this thesis seeks to act as a critique of the current enactment in practice. The provisions are already under-used and under-applied; without change, they may never reach the stage where they are ethically and practically viable. It is argued that the advance refusals provisions are not taking full effect due to a combination of lacking moral grounding and general dismissal of key ethical dilemmas at the forefront of application. Building on this, the moral basis for this thesis is found in Alan Gewirth’s Principle of Generic Consistency (PGC) which links directly with the general application of human rights. The PGC becomes a compass for determining how best to treat persons when addressing the three most prominent challenges faced by the 2005 Act which are: the debate between the conferred right of autonomy versus the right to life; the issue of personhood; and, the personal identity problem. Ultimately, unless framework provisions are strengthened, and the Mental Capacity Act 2005 is rethought in light of prominent ethical, legal and social considerations, the constraints of the Act on paper will continue to suppress the important underlying values promulgating individual autonomy. (shrink)