What if I don’t want to live until the bitter end? Safeguarding the practice of Assisted Dying in the context of dementia

Abstract

Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options are also increasing. While the ethical and legal dimensions surrounding the option of assisted dying (AD) remain controversial and deeply polarising, discussion around such provision for dementia raises even more controversy. Individuals with dementia can seek to extend their rights for autonomy and self-determination, to protect their preferences in a perceived incompetent future, through an advance directive. However, some clinicians and other commentators have found advance euthanasia directives (AEDs) to be unfeasible in practice. It is of interest and concern whether AEDs can be appropriately safeguarded to protect individuals’ preferences when they may no longer possess decision-making capacity. My research objective, therefore, is to explore whether a safeguard could be proposed which would provide guidance for individuals with dementia should they consider AD and for health professionals involved in their medical treatment/care. An in-depth literature review was conducted to explore the ethical validity and feasibility of such and how they may influence the practice of, and attitudes towards, AD in dementia. Three empirical studies were undertaken: 1) Using the Delphi methodology, the perspectives of experts were sought to explore primary issues in this context as well as exploring a conceptual framework to safeguard practice and application; 2) the everyday challenges, experiences, and views of the public participating in online communities were explored through a Netnographic lens; and, 3) the synthesised findings of the Delphi and Netnography studies were put to the test by collecting data from an informed group. Together, the conceptual and the empirical studies undertaken contribute to the research by: 1) illuminating the status quo of individuals whose personal/professional lives are affected by dementia and the current legislative provision, and their attitudes regarding such provision for dementia; 2) advancing our knowledge of some of the primary practical, moral, and legal challenges; and inconsistencies within current legislative provisions concerning AD and dementia; 3) addressing the potential impacts of permitting or prohibiting AEDs for individuals with dementia and their families/caregivers and healthcare providers; and, 4) proposing a number of potential safeguards to ensure its safe application.