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)

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)

Specifying the moral demands of respect for the autonomy of people with dementia (PWD) in nursing homes (NHs) remains a challenging conceptual task. These challenges arise primarily because received notions of autonomous decision-making and informed consent do not straightforwardly apply to PWD in NHs. In this paper, I investigate whether, and to what extent, the influential account of autonomous decision-making and informed consent proposed by Beauchamp and Childress has applicability and relevance to PWD in NHs. Despite its otherwise practical orientation (...) and suitability for acute care settings, I identify three problems with this account when applied to PWD in NHs. These problems include (1) intentionality as an all-or-nothing condition of autonomous decision-making, (2) construing consent as one-off authorization, and (3) unresolved ambiguities around the primacy of precedent autonomy over best interest considerations. To address these problems, I propose and defend a number of revisions to Beauchamp and Childress’s account. First, I suggest that we consider intentionality as a non-binary criterion of autonomous decision-making. Second, I argue for a model of process consent to overcome the moral inadequacy of construing consent as one-off authorization in NHs. And, to overcome the third problem, I suggest accounting for both precedent and extant autonomy of PWD, considering mandates of precedent autonomy not as prescriptive but as informative, and drawing a less rigid distinction between autonomy considerations and best interest judgements. I conclude that this revised version of Beauchamp and Childress’s account fares better than the original version in capturing relevant autonomy considerations to care for PWD in NHs. (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)

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)

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)

There is an urge to introduce high technology and robotics in care settings. Assisted living 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: interaction-based sense of autonomy, coping-based sense of autonomy, and 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)

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)

It is a common experience among care professionals that persons with dementia often say ‘no’ to conventional caring measures such as taking medication, eating or having a shower. This tendency to say ‘no’ may also concern the use of assistive technologies such as fall detectors, mobile safety alarms, Internet for social contact and robots. This paper provides practical recommendations for care professionals in home health care and social care about how to respond to such resistiveness towards assistive technologies. Apart from (...) the option of accepting the ‘no’, it discusses a number of methods for influencing persons with dementia in order to overcome the ‘no’. These methods range from various non-coercive measures—including nudging—to coercion. It is argued that while conventional caring measures like those mentioned are essential for survival, health or hygiene, assistive technologies are commonly merely potentially beneficial supplements. With this in mind, it is concluded that care professionals should be more restrictive in using methods of influence involving some degree of pressure regarding assistive technologies than regarding conventional caring measures. (shrink)

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)

During recent decades, theories of mutual recognition have been intensively debated in social philosophy. According to one of the main theorists in the field, Axel Honneth, the entire social world may be based on interpersonal recognition. Our aim is to study what it would take that residents in long-term care would become adequately interpersonally recognized. We also examine who could be seen as bearing the responsibility for providing such recognition. In this paper, we distinguish ten aspects of recognition. We suggest (...) that in order to support residents’ dignity, long-term care should be arranged in a way that preserves residents’ full personhood regardless of their cognitive or other abilities: the mere fact that they are human persons is a ground for recognition as a person. But further, in good care residents’ personal characteristics and residents’ ties to significant others are also recognized to enable them to feel loved, esteemed and respected. (shrink)

There are studies on the normative ethical frameworks used by long-term care staff and studies proposing how staff should reason, but few studies explore how staff actually reason. This study reports on the ethical reasoning process and experiences of moral distress of long-term care staff in the provision of social care. Seven interdisciplinary focus groups were conducted with twenty front-line staff. Staff typically did not have difficulty determining the ethical decision and/or action; however, they frequently experience moral distress. To manage (...) these experiences of moral distress in making ethical decisions, staff 1) comply with being told what to do out of fear of consequences, 2) defer decisions to family, 3) “have a meeting,” 4) socialization into and acceptance of workplace culture. Findings suggest that to better understand how and why staff make ethical decisions and improve quality and ethical care, we must explore the interaction between front-line practice and organizational and public policy. (shrink)

As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions (...) of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable. (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)