The reality of an ageing Europe has called attention to the importance of e-inclusion for a growing population of senior citizens. For some, this may mean closing the digital divide by providing access and support to technologies that increase citizen participation; for others, e-inclusion means access to assistive technologies to facilitate and extend their living independently. These initiatives address a social need and provide economic opportunities for European industry. While undoubtedly desirable, and supported by European Union initiatives, several cultural assumptions (...) or issues related to the initiatives could benefit from fuller examination, as could their practical and ethical implications. This paper begins to consider these theoretical and practical concerns. The first part of the paper examines cultural issues and assumptions relevant to adopting e-technologies, and the ethical principles applied to them. These include (1) the persistence of ageism, even in e-inclusion; (2) different approaches to, and implications of independent living; and (3) the values associated with different ethical principles, given their implications for accountability to older users. The paper then discusses practical issues and ethical concerns that have been raised by the use of smart home and monitoring technologies with older persons. Understanding these assumptions and their implications will allow for more informed choices in promoting ethical application of e-solutions for older persons. (shrink)

There is an urge to introduce high technology and robotics in care settings. Assisted living (AL) is the fastest growing form of older adults’ long-term care. Resident autonomy has become the watchword for good care. This article sheds light on the potential effects of care robotics on the sense of autonomy of older people in AL. Three aspects of the residents’ sense of autonomy are of particular interest: (a) interaction-based sense of autonomy, (b) coping-based sense of autonomy, and (c) potential-based (...) sense of autonomy. Ethnographical data on resident autonomy in an AL facility and existing literature on care robots are utilized in studying what kind of assurances different types of robots would provide to maintain the sense of autonomy in AL. Robots could strengthen the different types of sense of autonomy in multiple ways. Different types of robots could widen the residents’ space of daily movements, sustain their capacities, and help them maintain and even create future expectations. Robots may strengthen the sense of autonomy of older persons in AL; however, they may simultaneously pose a threat. Multi-professional discussions are needed on whether robots are welcomed in care, and if they are, how, for whom, and in what areas. (shrink)

Background: Autonomy is a central concept in both bioethics and rehabilitation. Bioethics has emphasized autonomy as self-governance and its application in treatment decision-making. In addition to discussing decisional autonomy, rehabilitation also focuses on autonomy as functional independence. In practice, responding to patients with diminished autonomy is an important component of rehabilitation care, but also gives rise to tensions and challenges. Our objective was to better understand the complex and distinctive ways that autonomy is understood and upheld in the context of (...) rehabilitation care by reviewing how autonomy is discussed in the rehabilitation literature. Methods: We conducted a scoping review addressing issues of autonomy in the context of mental and physical rehabilitation. Our process followed three sequential steps. We extracted and analyzed bibliometric information. We then examined how autonomy was defined and conceptualized. Finally, we examined how the articles discussed the roles of rehabilitation health professionals in responding to patient autonomy. Findings: The articles include 16 empirical reports, 17 case studies and 30 theoretical papers. The most common conceptual accounts of autonomy drew upon principlism, rights-based and legal analyses, and relational/social approaches. We identified four broad approaches for responding to patient autonomy: supporting, promoting, respecting and advocating. Conclusion: This review helps clarify some of the ambiguities and conceptual distinctions underlying discussions and practices related to autonomy in rehabilitation. It also draws attention to a wide range of activities that health professionals can undertake with the goal of supporting, promoting, respecting and advocating for patient autonomy in rehabilitation care. (shrink)

Phenomenological healthcare research should include the lived experiences of a broad group of healthcare users. In this paper it is shown how shadowing can give a voice to people in vulnerable situations who are often excluded from interview studies. Shadowing is an observational method in which the researcher observes an individual during a relatively long time. Central aspects of the method are the focus on meaning expressed by the whole body, and an extended stay of the researcher in the phenomenal (...) event itself. Inherent in shadowing is a degree of ambivalence that both challenges the researcher and provides meaningful insights about the phenomenon. A case example of a phenomenological study on the experiences of elderly hospital patients is used to show what shadowing yields. (shrink)

In this paper I will examine how the Mental Capacity Act 2005 regulates the assessment of decision-making capacity in England and Wales. I will argue that there are difficulties in reconciling the Act with how people make decisions in practice. I will explore how ideas from the ethics of care and from phenomenology can be used to take better account of how capacity flows from a person's relationships as well as their individual abilities. I will conclude by discussing some of (...) the ethical issues that have arisen in my assessments of decision-making capacity and how I have tried to respond. (shrink)

ABSTRACTThis paper brings together a phenomenological and vulnerability-theoretic approach to dementia. The paper challenges the view that subjects with dementia can simply be understood in terms of diminished cognitive capacities or that they have lost all vestiges of personhood or the capacity for meaningful interaction. Instead, drawing on vulnerability theory and the phenomenological work of Kristin Zeiler and Lisa Käll, an alternative view of persons with dementia is offered that is based on intersubjective and intercorporeal relations and accomplishments. A vulnerability (...) approach to dementia is developed that not only provides the basis for empathetic responses to illnesses such as dementia but also points to the intersubjective constitution of subjects more generally. The argument developed is that the notion of vulnerability designates a form of openness to others and that such openness is a precondition for empathy. (shrink)

This study examines elderly residential life in long-term care settings, focusing on the ways residents interact with their physical and social environments. It further proposes that the residential environment is an important player for everyday ethics in long-term care settings, and is also an important factor in enhancing the quality of life for residents. By employing the theories of place identity and environmental meanings and listening to the voices of the elderly collected through an ethnographic field study in elderly homes (...) of life care, the study reveals the residents’ experiences of going through declining health and moving through the stages of care. Two major themes were identified. The first theme of liminal life portrays the elders’ fears as they move through the stages of care. This theme includes four sub-themes: the loss of home and the loss of autonomy; impending loss and its constant reminders; the social classification of “us” and “them”; the irreversibility of moving. The second theme of relational life describes the keys to successful transitions as experienced and told by the residents. The second theme includes three sub-themes: shifting identity and the acceptance of old age; human interdependence and building trust; an accompanied death. Study implications are further discussed, including specific suggestions for social programs and revisions to the physical environments. A more fundamental question about place-based staged care is also raised so as to serve as a point of departure for reflections and discussions amongst health professionals, planners and designers, and other decision-makers. (shrink)

This paper is predicated on the understanding that clinical encounters between clinicians and patients should be seen primarily as inter-relations among persons and, as such, are necessarily moral encounters. It aims to relocate the discussion to be had in challenging medical decision-making situations, including, for example, as the end of life comes into view, onto a more robust moral philosophical footing than is currently commonplace. In our contemporary era, those making moral decisions must be cognizant of the existence of perspectives (...) other than their own, and be attuned to the demands of inter-subjectivity. Applicable to clinical practice, we propose and justify a Habermasian approach as one useful means of achieving what can be described as dialogic consensus. The Habermasian approach builds around, first, his discourse theory of morality as universalizable to all and, second, communicative action as a cooperative search for truth. It is a concrete way to ground the discourse which must be held in complex medical decision-making situations, in its actual reality. Considerations about the theoretical underpinnings of the application of dialogic consensus to clinical practice, and potential difficulties, are explored. (shrink)

Developing technology that accounts for values has been achieved in many areas, including security, gaming, finance, engineering, and many more. The main methodological approach has been that of value sensitive design. But most of the work to date has been on the first of its three stages. The focus of this article is on advances related to its second stage, empirical investigation, and in particular the impact of contextual understanding in that stage. Although lessons can be learnt from other domains, (...) the specific context of dementia means that there are nuances to understanding values, including justice and autonomy, that differ from other areas. The integration of value considerations in the development of assistive technology in dementia is explored in two broad categories: the traditional and ongoing need for fixed decision support, and adaptable decision support technologies. For fixed decision support the A&D Benchmark is particularly useful in design. But for adaptable technologies, that benchmark requires further development, including consideration of the values of additional stakeholders, such as the general public. (shrink)

Die individuellen und gesellschaftlichen Folgen des demographischen Wandels rücken moralische Fragen, die den angemessenen Umgang mit älteren Menschen und die sinnvolle Gestaltung des Lebens im Alter betreffen, verstärkt in den Mittelpunkt öffentlicher Aufmerksamkeit sowie medizin- bzw. pflegeethischer und gesundheitspolitischer Auseinandersetzungen. Allerdings wird das Altern als Prozess und das höhere Alter als Lebensphase in vielen dieser medizin- bzw. pflegeethischen und gesundheitspolitischen Debatten zumeist lediglich unter dem spezifischen Gesichtspunkt der jeweils erörterten Praktiken, Fragestellungen und Problemlagen thematisiert. Eine Betrachtung, die diese verschiedenen konkreten (...) Praxis- und Diskussionskontexte übergreift, das in ihnen jeweils vorausgesetzte Verständnis des Alter(n)s als solches thematisiert und in seiner Bedeutung für die ethische Fachdiskussion grundsätzlich reflektiert, findet dagegen kaum statt. Die Arbeitsgruppe „Altern und Ethik“ in der Akademie für Ethik in der Medizin soll zur Entwicklung einer solchen grundlegenderen und umfassenderen Betrachtungsweise beitragen. Der vorliegende Beitrag gibt einen ersten orientierenden Überblick über die zentralen Themenschwerpunkte, Problemstellungen und Kontroversen in den aktuellen medizin- bzw. pflegeethischen und gesundheitspolitischen Diskursen um das Alter(n) und markiert offene Fragen und Forschungsdesiderate. Wie sich dabei zeigt, kann eine eingehendere Auseinandersetzung mit dem Alter(n) nicht nur den einschlägigen alter(n)sbezogenen Fachdebatten zu fundierteren Perspektiven verhelfen, sondern auch der ethischen Diskussion insgesamt wichtige Impulse im Hinblick auf ihre anthropologischen Grundlagen und ihren normativen Bezugsrahmen vermitteln. (shrink)

Hospitalization significantly impacts the lives of older people, both physically and psychosocially. There is lack of observation studies that may provide an embodied understanding of older patients’ experiences in its context. The aim of this single case study was to reach a deeper understanding of one older patient’s lived experiences of hospitalization. The study followed a phenomenological embodied enquiry design and the qualitative observation method of shadowing was used. In April 2011, one older patient was shadowed for 7 days, 5–7 (...) h per day. To facilitate understanding in the reader the experiences are first presented in a story and subsequently analyzed by means of the lifeworld framework. The findings show that hospitalization is experienced as ambiguous safety, disconnected time, the feeling of being partially involved, and the struggle to re-attune to the body. (shrink)

Background As our society is ageing, nursing homes are finding it increasingly difficult to deal with an expanding population of patients with dementia and a decreasing workforce. A potential answer to this problem might lie in the use of technology. However, the use and application of surveillance technology in dementia care has led to considerable ethical debate among healthcare professionals and ethicists, with no clear consensus to date. Aim To explore how surveillance technology is viewed by care professionals and ethicists (...) working in the field, by investigating the ideal application of surveillance technology in the residential care of people with dementia. Methods Use was made of the concept mapping method, a computer-assisted procedure consisting of five steps: brainstorming, prioritising, clustering, processing by the computer and analysis. Various participants (ranging from ethicists to physicians and nurses) were invited on the basis of their professional background. Results The views generated are grouped into six categories ranging from the need for a right balance between freedom and security, to be beneficial and tailored to the resident, and clearly defined procedures to competent and caring personnel, active monitoring and clear normative guidance. The results are presented in the form of a graphic chart. Conclusions There appears to be an inherent duality in the views on using surveillance technology which is rooted in the moral conflict between safety and freedom. Elaboration of this ethical issue has proved to be very difficult. (shrink)