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)

The word ‘dignity’ is used in a variety of ways in bioethics, and this ambiguity has led some to argue that the term must be expunged from the bioethical lexicon. Such a judgment is far too hasty, however. In this article, the various uses of the word are classified into three serviceable categories: intrinsic, attributed, and inflorescent dignity. It is then demonstrated that, logically and linguistically, the attributed and inflorescent meanings of the word presuppose the intrinsic meaning. Thus, one cannot (...) conclude that these meanings are arbitrary and unrelated. This categorization and logical and linguistic analysis helps to unravel what seem to be contradictions in discourse about dignity and bioethics, and provides a hierarchy of meaning that has potential normative implications. (shrink)

We argue that all human beings have a special type of dignity which is the basis for (1) the obligation all of us have not to kill them, (2) the obligation to take their well-being into account when we act, and (3) even the obligation to treat them as we would have them treat us, and indeed, that all human beings are equal in fundamental dignity. We give reasons to oppose the position that only some human beings, because of their (...) possession of certain characteristics in addition to their humanity (for example, an immediately exercisable capacity for self-consciousness, or for rational deliberation), have full moral worth. What distinguishes human beings from other animals, what makes human beings persons rather than things, is their rational nature, and human beings are rational creatures by virtue of possessing natural capacities for conceptual thought, deliberation, and free choice, that is, the natural capacity to shape their own lives. (shrink)

When Richard Lamm made the statement that old people have a duty to die, it was generally shouted down or ridiculed. The whole idea is just too preposterous to entertain. Or too threatening. In fact, a fairly common argument against legalizing physician-assisted suicide is that if it were legal, some people might somehow get the idea that they have a duty to die. These people could only be the victims of twisted moral reasoning or vicious social pressure. It goes without (...) saying that there is no duty to die. (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We (...) analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using in-depth (...) face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

Prenatal screening can lead to the detection and diagnosis of significantly life-limiting conditions affecting the unborn child. Recognizing the difficulties facing parents who decide to continue the pregnancy, some have proposed perinatal hospice as a new modality of care. Although the medical literature has begun to devote significant attention to these practices, systematic philosophical reflection on perinatal hospice has been relatively limited. Drawing on Alasdair MacIntyre’s account of the virtues of acknowledged dependence, I contend that perinatal hospice manifests and facilitates (...) virtues essential to living well with human dependency and vulnerability. For this reason, perinatal hospice deserves broad support within society. (shrink)

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)

Ethics, Aging and Society...is the first major work in ten years to critically address issues and methodologies in aging and ethics...This well-organized volume begins theoretically and offers new ways of thinking about ethics that can handle the complexities and realities of aging in particular social contexts."--Choice This new research-based book, by experts in the field of ethics, is excellent and much-needed...I challenge you to consider reading this book and seeing all the ways in which you might be forced to rethink (...) things that most of us take as given for ethics and aging. I know you will not be disappointed and I guarantee you will end up thinking long and hard about personal and professional decisions you may have made as well as your assumptions about aging in America."--CFLE Network Newsletter This is a book that should be required reading for all involved in the ethical provision of services to the aging on any level, as well as for policy makers and administrators in positions of influence over the lives of older patients."--PsycCRITIQUES...the authors' application of feminist ethics to frail elders rings true to both my clinical experience working with frail elders, and my research experience trying to understand their quality of life concerns...there were true gems of ideas [in this book] that illuminated the limitations of the dominant paradigm of autonomy in bioethics. [The authors] make a compelling critique of end-of-life care."--GeriPal: A Geriatrics and Palliative Care Blog This book presents second generation issues in ethics, aging, and society by presenting critical outcomes that arise when ethics is applied to the practical concerns that occur in day-to-day elder care. The first volume in over 10 years to address ethics and gerontology, it is unparalleled in its comprehensiveness and integration of well-developed philosophical arguments with empirical research, humanistic scholarship, and insights gained from practical experience. This book challenges the tried and true approaches to ethical issues in aging and opens avenues for creative problem-solving. The authors' diverse backgrounds bring the advantages of both interdisciplinary scholarship and practical experience to this comprehensive textbook. It is an essential resource for those interested in, and working with, older people, from upper-level undergraduate students and graduate-division students, to gerontology practitioners in training. Key Features: Presents the first major work in over 10 years to integrate the disciplines of ethics and aging Includes case studies derived from day-to-day practice Addresses individual/clinical ethics in health and long-term care and ethical issues raised by public policy, cultural norms and social attitudes Examines such critical issues as Alzheimer's disease, long-term care, ageism, public policy, anti-aging medicine, elder abuse, and natural disasters Explores new directions in ethical and social philosophy as they pertain to gerontology and care. (shrink)