Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what (...) affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia. (shrink)

Advance directives have been hailed for two decades as the best way to safeguard patients’ autonomy when they are totally or partially incompetent. In many national contexts they are written into law and they are mostly associated with end-of-life decisions. Although advocates and critics of ADs exchange relevant empirical and theoretical arguments, the debate is inconclusive. We argue that this is so for good reasons: the ADs’ project is fraught with tensions, and this is the reason why they are both (...) important and deeply problematic. We outline six such tensions, and conclude with some positive suggestions about how to better promote patients’ autonomy in end-of-life decision. We argue that ADs should continue to be an option but they cannot be the panacea that they are expected to be. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The conclusion (...) is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

Advance directives are specific competent consumers’ wishes about future medical plans in the event that they become incompetent. Awareness of a patient’s autonomy particularly, in relation to their right to refuse or withdraw treatment, a right for the patient to die from natural causes and interest in end of life issues were among the main reasons for developing and legalizing advance medical directives in developed countries. However, in many circumstances cultural and religious aspects are among many factors that can hamper (...) implementation of advance directives. Islam and Muslims in general have a good understanding of death and dying. Islam allows the withholding or withdrawal of treatments in some cases where the intervention is considered futile. However, there is lack of literature and debate about such issues from an Islamic point of view. This article provides the Islamic perspective with regards to advance medical directive with the hope that it will generate more thoughts and evoke further discussion on this important topic. (shrink)

Detection of Alzheimer’s disease in an early stage is receiving increasing attention for a number of reasons, such as the failure of drug trials in more advanced disease stages, the demographic evolution, the financial impact of AD, and the approval of amyloid tracers for clinical use. Five focus group interviews with stakeholders were conducted.. The verbatim transcripts were analysed via the Nvivo 11 software. Most stakeholder groups wanted to know their own amyloid PET scan result. However, differences occurred between FGs: (...) two groups wanted to know, whilst in the three other groups FG members opted not to know or were still in doubt about their decision. Stakeholders provided insight into their reasons for wanting to know their amyloid PET scan result, for not wanting to know their result, or why they were in doubt about their decision. Several advantages and disadvantages were mentioned as part of knowing their amyloid PET scan result. Certain considerations were clustered in a grey zone, in between advantage and disadvantage, such as the emotional consequences. Clinicians, researchers, and policymakers ought to be aware of the diversity of reasons for wanting to know their result and how possible benefits and risks can be viewed differently. The current findings are of importance for future early diagnosis and disclosure of results in the research setting. (shrink)

Just as noncapacitated decision making will forever be a feature of clinical medicine, so will the quest for effective advance care planning and serviceable documentation of these preferences. “Re-...

This book sheds light on various ethical challenges military and humanitarian health care personnel face while working in adverse conditions. Contexts of armed conflict, hybrid wars or other forms of violence short of war, as well as natural disasters, all have in common that ordinary circumstances can no longer be taken for granted. Hence, the provision of health care has to adapt, for example, to a different level of risk, to scarce resources, or uncommon approaches due to external incentives or (...) requirements. This affects the practice of health care as well as its ethics. This book offers a panoramic overview on various challenges healthcare faces in extraordinary situations and provides new insights from practitioners’ as well as from academic scholars’ perspectives. (shrink)

NThere are many problems with Levi and Green’s (2010) suggestion that a computer-based decision aid will overcome the major objections to advance directives (ADs). We focus on just two here. First, we argue that the key assumption underlying Levi and Green’s paper, that autonomy always ought to take priority over other values, is false. Second, we argue that the paper misses the point of the most telling objections to the use of ADs: they lack the relevant moral authority to determine (...) treatments. It is not that they are merely subject to a set of contingent problems related to capturing the wishes of individuals or being open to misinterpretation by others.We conclude that the plug should be pulled on Levi and Green’s computer-based proposal. (shrink)