Respecting the autonomy of disabled people is an important ethical issue for providers of long-term care. In this influential book, George Agich abandons comfortable abstractions to reveal the concrete threats to personal autonomy in this setting, where ethical conflict, dilemma and tragedy are inescapable. He argues that liberal accounts of autonomy and individual rights are insufficient, and offers an account of autonomy that matches the realities of long-term care. The book therefore offers a framework for carers (...) to develop an ethic of long-term care within the complex environment in which many dependent and aged people find themselves. Previously published as Autonomy and Long-term Care, this revised edition, in paperback for the first time, takes account of recent work and develops the author's views of what autonomy means in the real world. It will have wide appeal among bioethicists and health care professionals. (shrink)

Perhaps the change of title says it all. This is the revised edition of Agich’s Autonomy and Long Term Care, which was itself a seminal work. The new title gives us the main drift: if autonomy is important in old age, so too is dependence. Indeed, in the actual world in which Agich is keen to locate his study, autonomy and dependence intermingle as inescapable features of old age for real people. As he says: “Maintaining a sense (...) of autonomous wellbeing is consistent with dependencies on medication or professional care if those dependencies help to maintain a more basic sense of functional integrity in those areas of life that individuals value” .The present book retains and renews its standing as a first rate work in the field of philosophical medical ethics. It aims “to sketch a framework for respecting autonomy in long term care”, rather than to work out practical guidelines . Nevertheless, its strength lies in Agich’s ability to move from the real world of often dependent older people to the philosophical underpinnings of our thinking about how we care for them. In so doing, Agich mounts a powerful attack on what he sees as a prevailing tendency in bioethics. It is the tendency to define autonomy “primarily in terms of a concept of human persons as rational, independent agents and decision makers, who are assumed to be competent and who can be understood without serious reference to society or history” . As he says: “Influenced by liberal theory, autonomy is often treated in bioethics as a concept that primarily applies to the public realm …. (shrink)

In the traditional system of Chinese families, individuals are embedded in the institution of the family with defined obligations to enhance family development. As a consequence of the male-biased sex ratio at birth in China since the 1980s, an increasing number of surplus rural males have been affected by a marriage squeeze becoming involuntary bachelors. Under China’s universal heterosexual marriage tradition, family development of rural involuntary bachelors has largely been ignored, but in China’s gender-imbalanced society, it is necessary to adopt (...) a family-based approach to identify and study the plight of rural involuntary bachelors. Studies on gender imbalance indicate that these men face multiple risks from the perspectives of their life course, the family life cycle, and the family ethic. To a certain extent, these risks are caused by a conflict between the individual’s family life and family ethics and are mainly reflected in problems concerning marriage, health, and old-age support. Not only do these vulnerabilities affect the individual and family development across the whole life cycle but also pose major risks to social development in the face of strong gender imbalance. In order to deal with risks faced by rural involuntary bachelors, core ethical principles, including autonomy, beneficence, and justice, need to be adopted. Through adjustments to informal support provided by the family and formal support provided by policy-makers, risk of uncertainty in family development faced by rural involuntary bachelors could be reduced. (shrink)

An ageing population and increased life expectancy are a characteristic of the Western world. Nevertheless, as Roger Fontaine writes, “although we should be glad about this fact, it should also be stressed that old age reveals profound discrepancies between individuals. In fact, we should not speak of ‘old age’ but ‘old ages’. Specialists make a distinction between normal old age, successful old age, and pathological old age.”Catherine Guchet points out that, at the end of the twentieth century, two images of (...) old age coexist, utilitarian in conception: that of ‘flamboyant’ old age and that of ‘dependent’ old age. The latter is associated with a loss of autonomy and dignity, especially for subjects affected by senile dementia, described as ‘unconscious’. We shall focus on these more problematic forms of old age. (shrink)

Ageism within the context of care has attracted increasing attention in recent years. Similarly, autonomy has developed into a prominent concept within health care law and ethics. This paper explores the way that ageism, understood as a set of negative attitudes about old age or older people, may impact on an older person’s ability to make maximally autonomous decisions within health care. In particular, by appealing to feminist constructions of autonomy as relational, I will argue that the key (...) to establishing this link is the concept of self-relations such as self-trust, self-worth and self-esteem. This paper aims to demonstrate how these may be impacted by the internalisation of negative attitudes associated with old age and care. In light of this, any legal or policy response must be sensitive to and flexible enough to deal with the way in which ageism impacts autonomy. (shrink)

As a result of the publicly funded Human Genome Project (HGP), and an increasing number of private enterprises, a new form of eugenic theory and practice has emerged, differing from previous manifestations. Genetic testing has become a consumer service that may now be purchased at greatly reduced cost. While the old eugenics was pseudoscientific, the new eugenics is firmly based on DNA research. While the old eugenics focused on societal measures against the individual, the new eugenics emphasizes the family as (...) a control agent. Eugenics is now voluntary, with the promise of abortion for those afraid of producing genetically damaged children. The ethical concepts of beneficence, avoidance of maleficence, autonomy, and equity are discussed in terms of aspects of the HGP. One major issue is the need for an ethical system available to health consumers that will empower them and assist in their biogenic decisions. “The concentration on the genes implicated in cancer is only a special case of a general genomania (emphasis added) that surfaces in ... the weekly announcements in The New York Times of the location of yet another gene for another disease. The revealing rhetoric of this publicity is always the same; only the blanks need to be filled in: ‘It was announced today by scientists at [Harvard, Vanderbilt, Stanford] Medical School that a gene responsible for [some, many, a common form of] [schizophrenia, Alzheimer’s, arteriosclerosis, prostate cancer] has been located and its DNA sequence determined. This exciting research, say scientists, is the first step in what may eventually turn out to be a possible cure for this disease.’”. (shrink)

A child is a developing person with evolving capacities that include autonomy, mental capacity and capacity to assume responsibility. Hence, children are entitled to participatory rights in South Africa as observed in the Children’s Act 38 of 2005. According to section 129 of the Act a child may consent to his or her own medical treatment provided that he or she is over the age of 12 years and is of sufficient maturity and decisional capacity to understand the various (...) implications of the treatment including the risks and benefits thereof. However, the Act does not provide a definition for what qualifies as ‘sufficient maturity’ nor does it stipulate how health professionals ought to assess the decisional capacity of a child. In addition, South Africa is a culturally diverse country. The Western liberal notion of autonomy may not necessarily find equal prominence in the mores of people with a different worldview. Hence we demonstrate a few salient comparisons between legal liberal moral theory and African communitarianism as pertinent to the autonomy of the child. Children are rights-holders by virtue of their humanity. Their dignity as individual human persons affords them the entitlement to human rights as contemplated under the Constitution of the Republic of South Africa. However, contrary to the traditional Western notion of individual autonomous persons African societies hold a communalistic notion of person hence there is less regard for individual autonomy and rights with more emphasis on the communal good and maintaining the continuity of relationships and interdependencies shared within a community. A child considered in this view is not regarded as a full person. This implies that decisions concerning the child, including consent to medical treatment are discussed and determined by the community to which the child belongs. Lastly, in this article, we draw on the notion of capacity for responsibility to produce a pragmatic definition of sufficient maturity. It seems reasonable to suggest a move away from a general legal age of consent for medical treatment toward more individualised, context-specific approaches in determining the maturity of a child patient to consent to medical treatment. Perhaps, decision-making with respect to consent to the medical treatment of a child belonging to a traditional African community where the notion of a person is embedded in communitarianism ought to involve the child’s parents/guardians/caregivers where possible provided that the best interests of the child are awarded priority. (shrink)

The main aim of this study is to test the validity of the Motivation, Engagement, and Thriving in User Experience model in higher education. We propose a process model in which we investigate how the need-satisfaction of digital learning tools within the interface sphere and task sphere accounts for engagement, learning, and well-being. A total of 426 higher education students drawn from two subsamples participated in this cross-sectional study. A structural equation model shows that interface autonomy and competence satisfaction (...) positively predict task autonomy and competence. Task competence, in turn, negatively predicts focused attention and positively predicts perceived usability and well-being. Task autonomy positively predicts perceived usability and reward. Based on our results, we provide some initial support for the METUX model in higher education. However, more validation work is needed to improve the scale that measures need-satisfaction in the interface and task spheres. Moreover, we find no support for the effect of task sphere on learning. Further investigations are needed into how METUX can be used in domain- and situation-specific contexts to account for increases in engagement, learning, and well-being. Finally, future studies need to include all aspects of the METUX model in order to fully test its validity. (shrink)

> Wealthy nations must do much more, much faster. The United Nations General Assembly in September 2021 will bring countries together at a critical time for marshalling collective action to tackle the global environmental crisis. They will meet again at the biodiversity summit in Kunming, China, and the climate conference 26) in Glasgow, UK. Ahead of these pivotal meetings, we—the editors of health journals worldwide—call for urgent action to keep average global temperature increases below 1.5°C, halt the destruction of nature (...) and protect health. Health is already being harmed by global temperature increases and the destruction of the natural world, a state of affairs health professionals have been bringing attention to for decades.1 The science is unequivocal; a global increase of 1.5°C above the preindustrial average and the continued loss of biodiversity risk catastrophic harm to health that will be impossible to reverse.2 3 Despite the world’s necessary preoccupation with COVID-19, we cannot wait for the pandemic to pass to rapidly reduce emissions. Reflecting the severity of the moment, this editorial appears in health journals across the world. We are united in recognising that only fundamental and equitable changes to societies will reverse our current trajectory. The risks to health of increases above 1.5°C are now well established.2 Indeed, no temperature rise is ‘safe’. In the past 20 years, heat-related mortality among people aged over 65 has increased by more than 50%.4 Higher temperatures have brought increased dehydration and renal function loss, dermatological malignancies, tropical infections, adverse mental health outcomes, pregnancy complications, allergies, and cardiovascular and pulmonary morbidity and mortality.5 6 Harms disproportionately affect the most vulnerable, including children, older populations, ethnic minorities, poorer communities and those with underlying health problems.2 4 Global heating is also contributing to the decline in …. (shrink)

Current AI policy recommendations differ on what the risks to human autonomy are. To systematically address risks to autonomy, we need to confront the complexity of the concept itself and adapt governance solutions accordingly.

The realities and myths of long-term care and the challenges it poses for the ethics of autonomy are analyzed in this perceptive work. The book defends the concept of autonomy, but argues that the standard view of autonomy as non-interference and independence has only a limited applicability for long term care. The treatment of actual autonomy stresses the developmental and social nature of human persons and the priority of identification over autonomous choice. The work balances analysis (...) of the ethical concepts associated with autonomy with discussion of the implications of the ethical analysis for long term care. A central chapter involves a phenomenological analysis of four general features of everyday experience (space, time, communication, and affectivity) and explores their practical implications for long term care. This work concludes with a discussion of the advantages associated with a phenomenologically-inspired treatment of actual autonomy for the ethics of long-term care. (shrink)

Providing in-utero treatments to target specific conditions in the fetus is a relatively new approach in perinatal care, with the vast majority of these treatments being used off-label. The high degree of off-label medication use in the perinatal and neonatal settings raises concern for the safety of both the fetuses and expectant mothers. This report presents two examples of intra-amniotic drug administration based on reported clinical cases. From the ethical framework of medical principlism, we examine the competing ethical duties of (...) autonomy, beneficence, and non-maleficence in this setting. We then lay out three fundamental ethical principles for obtaining informed consent and maximizing clinical benefit. (shrink)

Cognitive deficits are part of the normal aging process and are exacerbated by various diseases that affect adults in old age, such as dementia, depression, and stroke. A significant scientific and social effort has been expended to evaluate whether cognitive deficits can be remedied through systematic interventions. The editors, as well as the chapter authors, represent a variety of viewpoints that span theory as well as practice. Overall, they aim to address concepts in cognitive rehabilitation that are useful in intervention (...) research -- research which examines problems and issues in normal and pathological aging -- and focusing on the application of cognitive training strategies in natural settings. Thus, the book is grounded in contemporary theory in cognitive aging and is applicable to both the practicing clinician as well as the researcher. It is organized into four sections. The first highlights prominent theoretical principles; the second looks at cognitive rehabilitation strategies in normal aging; the third examines the interplay between lifestyle patterns and cognitive function through applying a broad definition of lifestyle choices; and the fourth focuses on rehabilitation strategies that address issues in pathological aging. (shrink)

Next SectionThe principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary medical (...) practice reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion. (shrink)

The Aging Self and the Aging Society Ethical issues involving the elderly have recently come to the fore. This should come as no surprise: Since the turn of the century, there has been an eightfold in crease in the number of Americans over the age of sixty five, and almost a tripling of their proportion to the general population. Those over the age of eighty-five- the fastest growing group in the country-are twenty one more times as numerous as in 1900. (...) Demographers expect this trend to accelerate into the twenty-first century. The aging of society casts into vivid relief a num ber of deep and troubling questions. On the one hand, as individuals, we grapple with the immediate experience of aging and mortality and seek to find in it philosophical or ethical significance. We also wonder what responsi bilities we bear toward aging family members and what expectations of others our plans for old age can reasona bly include. On the other hand, as a community, we must decide: What special role, if any, do older persons occupy in our society? What constitutes a just distribution of medical resources between generations? And, How can institutions that serve the old foster imperiled values, such as autonomy, self-respect, and dignity? Only recently have we begun to explore these themes, yet already a rich and fruitful literature has grown up around them. (shrink)

The idea of the right to mobility has been fundamental to modern Western citizenship and is expressed in many legal and government documents. Although there is widespread acceptance regarding the importance of mobility in older adults, there have been few attempts to develop ethical and theoretical tools to portray mobility equalities in old age. This paper develops a novel conceptualisation of kinetic values focusing on older adults whose ability to move has been restricted for internal and external reasons. Informed by (...) the phenomenological theory of kinaesthesia, I suggest that kinetic values are related to four principal dimensions: self-motion, being-moved, co-motion, and forced movement. I assume that these dimensions can address the key dilemma of human dignity among older adults who suffer from losing their autonomy and agency through their mobility impairments and who are at risk of being confined to their homes. To concretise the formulation of kinetic values, I study movement as part of technological equipment and urban infrastructure to examine what kinds of kinetic values mobility services and assistive robots convey for older adults in smart urban environments. By bridging disciplines, the phenomenological approach provides a novel understanding of mobility and the interplay among assistive technologies, kinaesthesia, and urban technological infrastructure. The approach suggests that kinetic values should be interpreted more comprehensively so that kinaesthesia can become better identified as a positive life-promoting practice. (shrink)

Rising numbers of ageing prisoners and goals on implementing equivalent health care in prison raise issues surrounding end-of-life care for prisoners. The paucity of research on this topic in Europe means that the needs of older prisoners contemplating death in prison have not been established. To investigate elderly prisoners’ attitudes towards death and dying, 35 qualitative interviews with inmates aged 51 to 71 years were conducted in 12 Swiss prisons. About half of the prisoners reported having thought about dying in (...) prison, with some mentioning it in relation with suicidal thoughts and others to disease and old age. Themes identified during data analysis included general thoughts about death and dying, accounts of other prisoners’ deaths, availability of end-of-life services, contact with social relations, and wishes to die outside of prison. Study findings are discussed using Allmark’s concept of “death without indignities,” bringing forth two ethical issues: fostering autonomy and removing barriers. Attributing the identified themes to these two ethical actions clarifies the current needs of ageing prisoners in Switzerland and could be a first step towards the implementation of end-of-life services in correctional systems. (shrink)

We are living through a demographic transition from a world in which there were lots of young people and very few older adults to one in which the numbers in these age groups are becoming more evenly balanced. One reason for this is that more of us are living into our seventies, eighties, nineties, and beyond. That is the good news. Unfortunately, the chance of developing chronic illnesses (including diabetes, arthritis, and dementia) is typically higher for people in these older (...) age groups than for those who are younger. Because we do not know how to cure these illnesses, many of us will spend at least some of this extra time with one or more chronic illness. While we are more likely than in the past to live into older age, we are likely to be living with illness when we get there. That raises a challenge: how should we respond to this change? (shrink)

With dying increasingly becoming a medicalised experience in old age, we are witnessing a shift from concern over death itself to an interest in dying ‘well’. Fierce discussions about end-of-life decision making and the permissibility of medical intervention in dying, discursively structured around the notion of a ‘good’ death, are evidence of this shift. This article focuses on ‘autonomy’ and ‘dignity’ as key signifiers in these discussions. Rather than being fully fixed and stable, both signifiers are contingent and carry (...) a variety of meanings within different discursive projects. The article aims to distinguish the varieties of these signifiers by elaborating existing theoretical perspectives on autonomy and dignity, and also, starting from a perspective on mass media as sites of meaning production and contestation, to study the contingency of autonomy and dignity in Belgian newspaper coverage of four prominent euthanasia cases. By means of a discourse-theoretical textual analysis, this study exposes a dominant—yet contested—articulation of rational-personal autonomy and of dignity in external terms as something that can be obtained, retained or lost, rather than in terms of intrinsic human integrity. These logics of representation reflect a more general late modern dominance of liberal autonomy and of dignity as being closely connected to self-identity, but at the same time result in limited visibility of alternative ways of experiencing an autonomous and dignified death. (shrink)

When a loved one dies, it is common for the bereaved to feel profoundly lonely, disconnected from the world with the sense that they no longer belong. In philosophy, this experience of ‘loss and loneliness’ has been interpreted according to both a loss of possibilities and a loss of the past. But it is unclear how these interpretations apply to the distinctive way in which loss and loneliness manifest in old age. Drawing on the phenomenological analyses of old age given (...) by de Beauvoir and Améry, I consider how the diminishment of the capacity for projection and recollection complicate recent interpretations of loss and loneliness, whilst nevertheless reinforcing the conclusion that in old age subjectivity is necessarily impoverished. Developing a critical stance on de Beauvoir and Améry’s underlying conception of subjectivity, I turn to Levinas in considering whether or not there is a way to reimagine subjectivity such that the estrangement and alienation of older adults might be ameliorated rather than exacerbated. Grounded in the passive body-in-itself rather than the self-transcending capacity of the body-for-itself, I suggest it becomes possible to reconceptualise the experience of loss and loneliness in old age; both in terms of what is lost and what needs to be restored if older adults are to be helped to find themselves at home in the world in the midst of, and indeed because of, manifold loss. (shrink)

Abstract:Over more than thirty years the Bolognese botanist, natural historian, and physician Ulisse Aldrovandi compiled his Pandechion epistemonicon—a manuscript encyclopedia composed of pasted note slips drawn from books he was reading. This article examines the 580 slips that comprise Aldrovandi’s Pandechion entry on old age. The entry allows us to examine how an early modern physician and his intellectual community approached old age as an epistemological problem with medical, poetic, and spiritual dimensions. Aldrovandi’s engagement with old age in the Pandechion (...) presents a fluid set of disciplinary boundaries for how we understand old age in the past and present. (shrink)

With dying increasingly becoming a medicalised experience in old age, we are witnessing a shift from concern over death itself to an interest in dying ‘well’. Fierce discussions about end-of-life decision making and the permissibility of medical intervention in dying, discursively structured around the notion of a ‘good’ death, are evidence of this shift. This article focuses on ‘autonomy’ and ‘dignity’ as key signifiers in these discussions. Rather than being fully fixed and stable, both signifiers are contingent and carry (...) a variety of meanings within different discursive projects. The article aims to distinguish the varieties of these signifiers by elaborating existing theoretical perspectives on autonomy and dignity, and also, starting from a perspective on mass media as sites of meaning production and contestation, to study the contingency of autonomy and dignity in Belgian newspaper coverage of four prominent euthanasia cases. By means of a discourse-theoretical textual analysis, this study exposes a dominant—yet contested—articulation of rational-personal autonomy and of dignity in external terms as something that can be obtained, retained or lost, rather than in terms of intrinsic human integrity. These logics of representation reflect a more general late modern dominance of liberal autonomy and of dignity as being closely connected to self-identity, but at the same time result in limited visibility of alternative ways of experiencing an autonomous and dignified death. (shrink)

This chapter discusses the basic concepts that will form the basis for further construction of the theoretical model of the creative ageing policy. An overview of the basic notions will allow us to avoid ambiguity and to introduce the main assumptions of contemporary social gerontology and human development theories.

Almost all countries and fertility clinics impose age limits on women who want to become pregnant through Assisted Reproductive Technologies (ART). Age limits for aspiring fathers, however, are much less common and remain a topic of debate. This article departs from the principle of reproductive autonomy and a conditional positive right to receive ART, and asks whether there are convincing arguments to also impose age limits on aspiring fathers. After considering three consequentialist approaches to justifying age limits for aspiring (...) fathers, we take in a concrete normative stance by concluding that those are not strong enough to justify such cut-offs. We reinforce our position by drawing a comparison between the case of a 39-year-old woman who wants to become a single mother via a sperm donor on the one hand, and on the other hand the same woman who wants to have a child with a 64-year-old man who she loves and who is willing to care for the child as long as he is able to. We conclude that, as long as appropriate precautions are taken to protect the welfare of the future child, couples who want to receive fertility treatment should never be limited on the basis of the age of the (male) partner. An absence of age limits for men would respect the reproductive autonomy of both the man and the woman. (shrink)

This study intended to test whether attachment to one’s own residential place at neighborhood level could represent a coping response for the elderly (consistently with the “docility hypothesis;” Lawton, 1982), when dealing with the demands of unfamiliar environments, in order to balance their reduction of spatial abilities. Specifically, a sequential path was tested, in which neighborhood attachment was expected to play a buffer role between lowered spatial competence and neighborhood satisfaction. The participants (N = 264), senior citizens (over 65-year-old), responded (...) to a questionnaire including the measures of spatial self-efficacy, spatial anxiety, attitude toward wayfinding, residential attachment and residential satisfaction. Results from the mediation analysis showed that a lower perceived spatial self-efficacy is associated to a higher spatial anxiety, and both promote a more negative attitude toward wayfinding tasks in non-familiar places. This leads to a higher attachment to one’s own neighborhood, which in turn predicts a higher residential satisfaction. Thus, the “closure” response of becoming more attached to their residential place may be an adaptive strategy of the elderly for compensating the Person-Environment (P-E) mis-fit (Lawton and Nahemow, 1973) when they feel unable (or less able) to cope with the demands of unfamiliar environments. (shrink)