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Abstract Background: Wandering is a behavioral symptom of dementia that often results in dementia patients eloping from homes and care facilities, leading to situations of high risk for their injury or death. Caregivers have turned to the use of electronic tracking devices for management of wandering. The capability of these devices to track, record, and monitor daily life raises profound ethical questions related to their use on a vulnerable population. The objective of this review was to identify the ethical arguments and concepts used in the normative literature focusing on electronic tracking devices in dementia care. Methods: We conducted a systematic literature review for normative literature focusing on electronic tracking devices in dementia care. Twenty-two publications met the requirements for inclusion. Results: An analysis of normative arguments and concepts described in included literature revealed that the majority of publications utilize a principlist approach. Accordingly, arguments concerning electronic tracking devices largely fall under the four principles of biomedical ethics: autonomy, non-maleficence, beneficence, and justice. A particular emphasis is given to privacy and informed consent. The normative literature recognizes that electronic tracking devices have a dual effect, being capable of either bolstering or eroding the values connected to each principle. Conclusions: The number publications using principlism indicate a need to pursue new ethical approaches and expand upon the few non-principlist approaches already in use. In addition, many of the ethical issues raised concerning the use of electronic tracking devices involve value questions present during the design of these devices. Therefore, future ethical orientations or frameworks should account for ethical questions that exist on the continuum of design to use of electronic tracking devices.

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Health Technology Assessment (HTA) is a way of assessing and evaluating the validity of existent or innovative Health Technologies (HT). Through this process, general knowledge is provided about the positive and negative effects of the possible implementation and routine use of a particular HT. The need to integrate ethics into the HTA process has been eminent and it derives from the urgency to increase its liability. So far, there have not been unequivocal arguments specifying why such a move would be beneficial. However, a HTA able to connect ethical factors with technical information about the technologies can be more informative for decision and policy-making within healthcare systems. Nonetheless, a method applicable in HTA for paying additional attention to social and ethical issues has not yet been determined. Existent studies do not offer an evaluation of the methodological characteristics of evaluative frameworks, as they only describe the ethical analysis methods that have been previously performed in HTA reports. This systematic review aimed to carry out an analysis of the distinctive characteristics of current evaluative frameworks and frameworks aside from HTA. The goal was to provide supplementary insight about the chosen methodologies. This review recognized and analyzed 25 frameworks. They were constructed to aid two different purposes: evaluation of HTs and HT assessments for ethical issues. Specifically, the various characteristics of the frameworks were obtained through the use of a “Content Analysis Format”. The format focused on the frameworks’ scope and context, aim, foundational approach and ethical content, and the method used. The results were produced from the overlapping points of all frameworks. The outcome of this process was that even though one generic framework cannot prevail as “best” for evaluating technologies, the analysis of the existent evaluative frameworks, offers insight that can be used to bridge knowledge gaps occurring during the ethical analysis.

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Respect for autonomy is a key achievement of modern philosophy and has been widely assimilated by medical ethics. The principle of ‘respect for autonomy’ has helped to overcome regrettable practices such as medical paternalism and non-voluntary human research. Its application to ethical end-of-life issues is of paramount importance in contemporary bioethics as well. However, a narrow understanding of this principle, exclusively focused on cognitive aspects of individual decision-making, is being criticized from many standpoints. In this context, the emerging concept of ‘relational autonomy’ attracts increasing attention of scholars in the field. This project studies the concept of relational autonomy in end-of-life care ethics. It offers a critical study of the existing literature as well as a positive proposal that can adequately be applied to end-of-life situations. We thus use a double methodology. The first chapter presents a systematic review of argument-based ethical literature. It focuses on the meaning, foundations, and uses of relational autonomy in end-of-life care ethics literature. Fifty articles, remarkably recent and international, met our inclusion-exclusion criteria. We report the results of their analysis and detect some shortcomings in end-of-life care practices. The second chapter elaborates a positive proposal and aims at responding to these shortcomings. First, we show that the complex reality of autonomy as experienced by patients and caregivers in end-of-life situations is inadequately acknowledged. Second, we critically reflect on how the notion of ‘relational autonomy’ can offer a more adequate answer. In order to ground our reflection in real-life clinical practices, we start our work with a study case that is used as an illustration throughout the chapter. This thesis concludes with the presentation of a future research project, is a foundational, empirical, and ethical analysis of euthanasia in persons with advanced dementia. It will consist of a systematic study of the existing literature; an empirical study focused on physicians' views towards this practice; and the proposal of a comprehensive ethical framework based on the previous results. In sum, ‘relational autonomy’ is an emerging concept in end-of-life care ethics. Despite its potentiality as a support for patients, family members, and health professionals in decision-making processes, it is far from being adequately conceptualized or operationalized. This project aims at theoretically developing the concept of ‘relational autonomy’ in a way that can be applied to complex ethical situations at the end of life.