Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality of (...) life is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way. (shrink)

This chapter contains sections titled: Introduction Conceptual Issues Decision Issues Conclusion References Further reading.

Quality-Adjusted Life Years (QALYs) and Disability-Adjusted Life Years (DALYs) are two of the most commonly used health measures to determine resource prioritization and the population burden of disease, respectively. There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or health levels of individuals. But (...) even if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality. In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits,1for disregarding fair chances in favor of utility maximization,2and for raising problems when applied in the context of variable population size.3Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people.4Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition. (shrink)

This paper examines the ethical issues of the inclusion of workers with disabilities in the workplace with a cross-fertilization approach between organization studies, the ethics of care, and a movement from the field of architecture and design that is called Universal Design (UD). It explores how organizations can use UD to develop more inclusive workplaces, first by applying UD principles to workspaces and second by showing how UD implies an integrative understanding of inclusion from the workspace to the workplace. Moreover, (...) this paper discusses the ethical challenges and complexities that this design practice faces in regard to its applicability to diverse organizations and industries. Finally, this paper demonstrates that inclusion requires abandoning any notion of a perfect, productive body and, therefore, recognizing our shared vulnerability and fundamental interdependence in the workplace. (shrink)

This article presents an archaeological inquiry into the early histories of Quality of Life measures, and takes this as an occasion to rethink the concept of the ‘medical model of disability’. Focusing on three instruments that set the ground for the emergence of QoL measures, namely, the Karnofsky Performance Scale, and the classification of functional capacity as a diagnostic criterion for heart diseases and as a supplementary aid to therapeutic criteria in rheumatoid arthritis – I discuss how medicine, throughout (...) the emergence of QoL, began to expand its gaze beyond the confines of the body to what that body does in daily life. Building upon Armstrong et al.’s notion of ‘distal symptoms’ and Wahlberg’s idea of ‘knowledge of living’, I propose the notion of disabilitization to encapsulate this expansion of the clinical gaze, through which medicine has come to articulate diseases and their treatments in new ways, and in so doing, has inadvertently created disability as a new kind of knowledge category in itself – a category that is defined not through its reduction to mere pathology, but through its dispersal into everyday life. I present this concept not as a periodization, but as a provocative discontinuity with the totalizing history assumed within the medical model of disability, and in so doing, ask what, in fact, holds ‘the medical model’ together, and whether there might be other ways of understanding medicine’s complex relationship to disability than what the concept of the medical model allows us to envisage. (shrink)

In this peer commentary on L. Syd M. Johnson’s “Inference and Inductive Risk in Disorders of Consciousness,” I argue for the necessity of disability education as an integral component of decision-making processes concerning patients with DOC and, mutatis mutandis, all patients with disabilities. The sole qualification Johnson places on such decision-making is that stakeholders are educated about and “understand the uncertainties of diagnosis and prognosis.” Drawing upon research in philosophy of disability, social epistemology, and health psychology, I (...) argue that this educational qualification is insufficient to address systemic ableism and other forms of epistemic bias in quality of life judgments. (shrink)

Rare neuromuscular diseases are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on the (...) QoL levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group, which participated in the intervention, and a control wait list group. QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability. (shrink)

Medical decision making relies heavily on the notion of the quality of a person's life in providing a reason to utilize one therapy over another or to withhold certain therapies altogether. The concept of quality of life, however, lacks clear definition as well as consensus on its constitutive elements. ;Chapter one engages a basic controversy in the literature: whether 'quality of life' should be understood as a subjective concept, or whether objective "lists" can help us assess a person's quality (...) of life. Chapter two examines whether anthropological data might provide guidance. While it is often argued that anthropological data supports relativism, John Finnis argues that anthropological data supports universalism which, in turn, bolsters objectivist claims. I argue that anthropological data may plausibly be interpreted to support either subjective or objective accounts, and thus, does not settle our approach to quality of life. ;Chapter Three examines objective list theories, in particular those of Bernard Gert and John Finnis. I find Gert's account to be problematic because it seems incomplete. Finnis's criteria, too, seems ultimately indefensible. Thus, I conclude that while objectivist claims may offer insight into human values and motivations, existing accounts are flawed. Chapter Four examines subjective accounts of quality of life. I focus on "preference satisfaction" accounts. While these accounts provide intuitively plausible descriptions, they fall victim to a host of difficulties. Perhaps the best example of this is the "fleeting preferences" problem, which undermines our confidence in making life-and-death decisions on the basis of quality of life considerations. ;The concluding chapter offers that much progress can be made by understanding quality of life in terms of finding meaning in life. Thus, the quality of one's life is determined by how much purpose and meaning is found in that life. While this notion is not without its problems, it does capture the complex elements of the kinds of cases in which we are particularly interested, and combines some of the best features of both the objective and subjective accounts. (shrink)

Decisions to override a parental request to withhold or withdraw treatment in the neonatal intensive care unit are often made based on the harm standard, with death being cast as the ultimate harm. However, often the treatment itself is not without harm, and the suffering engendered is undergone by an infant who is neither able to understand it nor express its presence. We can draw upon anticipated future quality of life to justify the present suffering, but are in a quandary (...) when that future is not guaranteed or is likely to hold little but further suffering. I propose that conflicts over continuing treatment are based both on disagreements about the desirability of possible futures, and on differing perceptions of the infant’s current level of suffering. Those of us who witness the suffering of these tiny, mute infants all bear some responsibility to insure that their suffering is not without purpose. (shrink)

This article proposes a novel strategy, one that draws on insights from antidiscrimination law, for addressing a persistent challenge in medical ethics and the philosophy of disability: whether health systems can consider quality of life without unjustly discriminating against individuals with disabilities. It argues that rather than uniformly considering or ignoring quality of life, health systems should take a more nuanced approach. Under the article's proposal, health systems should treat cases where quality of life suffers because of disability-focused (...) exclusion or injustice differently from cases where lower quality of life results from laws of nature, resource scarcity, or appropriate tradeoffs. Decisionmakers should ignore quality-of-life losses that result from injustice or exclusion when ignoring them would improve the prospects of individuals with disabilities; in contrast, they should consider quality-of-life losses that are unavoidable or stem from resource scarcity or permissible tradeoffs. On this proposal, while health systems should not amplify existing injustice against individuals with disabilities, they are not required to altogether ignore the potential effects of disability on quality of life. (shrink)

In addition to obviating the use of synthetic agrochemicals and emphasizing farming in accordance with agro-ecological guidelines, organic farming acknowledges the integrity of plants as an essential element of its natural approaches to crop production. For cultivated plants, integrity refers to their inherent nature, wholeness, completeness, species-specific characteristics, and their being in balance with their (organically farmed) environment, while accomplishing their “natural aim.” We argue that this integrity of plants has ethical value, distinguishing integrity of life, plant-typic integrity, genotypic integrity, (...) and phenotypic integrity. We have developed qualitative criteria to ethically evaluate existing practices and have applied these criteria to assess whether current plant breeding and propagation techniques violate the integrity of crop plants. This process has resulted in a design of a holistic, scientific approach of organic plant breeding and seed production. Our evaluation has met considerable criticism from mainstream (crop) scientists. We respond to the following questions: (1). Can ethics be incorporated into objective crop sciences? (2). What is the nature of the intrinsic value of plants in organic farming? We argue that criteria to take integrity into account can only be assessed from a holistic perspective and we show that a holistic approach is needed to design such ethical notions in a consistent way. The ethical notions have been further elaborated by formulating human responsibility and respect towards crop plants. Responsibility and respect can only be shown by providing crop plants the right to be nurtured and to express natural behavior at all levels of integrity. (shrink)

Extracorporeal membrane oxygenation (ECMO) is typically viewed as a time-limited intervention—a bridge to recovery or transplant—not a destination therapy. However, some patients with decision-making capacity request continued ECMO support despite a poor prognosis for recovery and lack of viability as a transplant candidate. In response, critical care teams have asked for guidance regarding the ethical permissibility of unilateral withdrawal over the objections of a capacitated patient. In this article, we evaluate several ethical arguments that have been made in favor of (...) withdrawal, including distributive justice, quality of life, patients’ rights, professional integrity, and the Equivalence Thesis. We find that existing justifications for unilateral withdrawal of ECMO support in capacitated patients are problematic, which leads us to conclude that either: (1) additional ethical arguments are necessary to defend this approach or (2) the claim that it is not appropriate to use ECMO as a destination therapy should be questioned. (shrink)

The notion of 'quality of life' frequently features in discussions about how it is appropriate to treat folk at the beginning and at the end of life. It is argued that there is a disjunction between its use in these two areas (1). In the case of disabled babies at the very beginning of life, 'quality of life' considerations are frequently used to justify enforced death on the basis that the babies in question would be better off dead. (...) At times, babies with severe disabilities are thus allowed to die or even killed. In the case of terminally ill people 'quality of life' is also important in guiding the actions of doctors. However, in the case of individuals who do not wish to live any longer because their quality of life is so poor that they would rather be dead, quality of life is likely to be dropped as a guiding principle. Thus patients who wish to die and ask to be killed, will most often be forced to endure enforced life. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers (...) and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

This paper explores the relationship between disability and quality of life and some of its implications for bioethics and healthcare. It focuses on the neglected perfectionist approach that ties well-being to the flourishing of human nature, which provides the strongest support for the common view of disability as a harm. After critiquing the traditional Aristotelian version of perfectionism, which excludes the disabled from flourishing by prioritizing rationalistic goods, I defend a new version that prioritizes the social capacities of (...) human nature and the goods of personal relationship. This relationship-centered perfectionism is able to accommodate and explain disabled thriving. I also show how these issues have important implications for specific bioethical debates and clinical practices, using a cluster of issues related to Down syndrome as timely illustrations. My goal is to sketch a perfectionist theory that gives a more plausible account of the relationship between disability and well-being, and that provides better practical guidance in cases involving judgments about the quality of disabled lives. (shrink)

Major considerations of disability studies—such as provision of care, accommodation for disabled people, and issues surrounding institutionalization—have been consistently marginalized in American bioethical discourse. The right to die, however, stands out as a paradigmatic bioethical debate. Why do advocates for expanding the volition and self-direction of disabled people emerge from the periphery only to help those disabled people who choose death? And why do the majority of people assume an unrealistically low quality of life for those with disabilities? (...) This paper will argue that the dominance of the Western liberal tradition in American culture motivates both these phenomena: by emphasizing individual rights over duties and responsibilities, assuming the isolated and independent rights-bearer as the prototypical person, and evoking an unrealistically atomistic view of human interaction. As an alternative, I offer a framework rooted in feminist ethics that emphasizes context, gives moral weight to human relationships, abandons the problematic ideal of a lone rights-bearer, and emphasizes the mutual vulnerability of embodied individuals. (shrink)

Stroke continues to be a leading cause of disability. Basic neurorehabilitation research is necessary to inform the neuropathophysiology of impaired motor control, and to develop targeted interventions with potential to remediate disability post-stroke. Despite knowledge gained from basic research studies, the effectiveness of research-based interventions for reducing motor impairment has been no greater than standard of practice interventions. In this perspective, we offer suggestions for overcoming translational barriers integral to experimental design, to augment traditional protocols, and re-route (...) the rehabilitation trajectory toward recovery and away from compensation. First, we suggest that researchers consider modifying task practice schedules to focus on key aspects of movement quality, while minimizing the appearance of compensatory behaviors. Second, we suggest that researchers supplement primary outcome measures with secondary measures that capture emerging maladaptive compensations at other segments or joints. Third, we offer suggestions about how to maximize participant engagement, self-direction, and motivation, by embedding the task into a meaningful context, a strategy more likely to enable goal-action coupling, associated with improved neuro-motor control and learning. Finally, we remind the reader that motor impairment post-stroke is a multidimensional problem that involves central and peripheral sensorimotor systems, likely influenced by chronicity of stroke. Thus, stroke chronicity should be given special consideration for both participant recruitment and subsequent data analyses. We hope that future research endeavors will consider these suggestions in the design of the next generation of intervention studies in neurorehabilitation, to improve translation of research advances to improved participation and quality of life for stroke survivors. (shrink)

Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not and that such judgments by medical practitioners in particular can be biased. Guided by their desire to do good and avoid harm, surgeons often rely on "the eyeball test" to decide whether a patient will or will not benefit from surgery. But the eyeball test can easily harbor a range of implicit judgments and (...) biases against patients with disabilities, including erroneous assumptions about QoL. We critique the use of the "eyeball" test and offer suggestions to reduce bias and ensure that patients’ values are more consistently prioritized in surgical decision-making. (shrink)

This paper examines transhuman technologies that seek to eradicate disability - primarily prostheses and implants. While most would agree that disability denies individuals the same quality of life as those deemed “abled,” this eradication ultimately relies upon secular humanist notions of the perfect human. Transhuman technologies hold obvious implications for the human body, however they also hold implications for what it means to be an acceptable body; ultimately these technologies aim to create the perfect human by eradicating the (...) disabled Other. This paper uses these notions to question concepts of “hierarchies of life,” at which disabled individuals are most commonly moved towards the bottom, or at the very least considered nonhuman. This article seeks to provide alternative theory to the eradication of disability, which states that these individuals may not have the same mode of existence, but that their mode/s are just as valid as those lived by “abled” individuals through an examination of Braille. (shrink)

Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient‐reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person‐centredness. First, we engage with the late‐modern history of the concept (...) of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person‐centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that values (...) these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

In our country, mildly mentally disabled students are being educated in general education classes by means of integration. An individualized education program (IEP) is being prepared for these students when needed. However, the impact of BEP on students with intellectual disabilities in religious education has not yet been sufficiently discussed. The purpose of this research is to examine the impact of the IEP on the achievement of religious education of mentally disabled students and the level of religious learning of these (...) students. For this purpose, in addition to the education given in the general education class for the 6 mildly mentally disabled integration students studying in the 4th grade of primary school, 2 hours of education were carried out in the support education room per week during the education and training year. Semi-experimental study was designed according to the single-tasked multiple-start model. Education process was evaluated by Achievement Test, the Teacher Observation Form, the pre-test based on the Self-Assessment Form, post-test and retention tests. As a result, it has been seen that BEP has a positive effect on the achievement of religious education of mentally disabled students (ZEKÖ). In this framework, it has been found that students are influenced by the society, especially by their peers, when they are given time they constitute religious knowledge, they understand normal individuals religious behaviours, they are more emotional, they forget religious information that is not used in everyday life and when they accomplish they increase self-confidence and self-esteem and internalize values.SummaryPeople differ in their creation. This difference is greater in people disabled. In terms of individual traits and educational qualifications, individuals with disabilities who are severely different from their peers and who have difficulty in playing the roles they should play are evaluated in several groups. One of these groups is mentally disabled. Mentally handicapped people have various rights as normal individuals. One of these rights is the right to education. National and international laws guarantee the educational rights of individuals with intellectual disabilities. Similarly, Islam and his best practitioner, the prophet Muhammad, did not consent to the transformation of the mentally disabled into begging masses or to their isolation, but rather to integrate them into society. According to Islam, individuals with intellectual disabilities have the “capacity to acquire rights“, even if they do not have "capacity to act". This right requires them to receive an education that takes into account their differences, just like normal individuals. Because of their learning characteristics, mentally retarded students differ from their peers, therefore they cannot benefit from the educational activities organized for normal students. So, these students need a special education to ensure that the mentally disabled are successful and live in society without being dependent.Inrecent years, in our country as well as in the world, the principle of "least restricted education environment" is taken into consideration for mentally handicapped people who need special education, which approaches to co-education with their peers. This approach is tried to-be applied at all educational levels. Due to the diagnosis and evaluation in the Guidance and Research Center, a large number of mentally retarded students are placed in normal schools. These students, like other courses, take the Religious Culture and Moral Knowledge Course together with the normal students. However, depending on their learning, they have the right to receive separate training as 1-3 people at-the support training room. The instructional adaptations necessary for the education of these students made by the Guidance and Research Centers are carried out by the teacher who plays the basic role in the education of the students. One of the important elements in the education of these mentally retarded students who need special education is the individualized education program. This program is prepared by the cooperation and joint decision of all stakeholders who may contribute to student’s education. The status of the student to participate in the learning and teaching activities, the amount and the quality of the education to be received in the support education room are made within the framework of this program.One of the most important courses in the education of mentally retarded students who are educated by inclusion is the Religion Culture and Moral Knowledge course. Because this course has the potential to make serious contributions to the socialization of students and to maintain their lives independently. However, there are a limited number of studies investigating the quality of religious education at-the scientific level. Furthermore, it has not been observed that these studies have been quasi-experimental. This study aims to reveal the quality of education for the mentally handicapped students. For this purpose, it aims to determine the contribution of religious education in the support education room to the success of the student depending on the individualized education program. It also makes it possible to make conclusions about how mentally handicapped people use their mental skills to learn religion. Depending on the aim of the study, during the 2015-2016 academic year, primary school 4th grade students and 6 mentally disabled inclusion students were educated. The quasi-experimental study was designed according to the single-subject multiple-start model. The process of the education, in other words, the development of mentally retarded students towards religious learning; were evaluated by Success Test, Teacher Observation Form and Self-Assessment Form based on pre-test, post-test and retention tests.Findings of the study; Faith, worship, the prophet Muhammad, Qur’an and its commentary, are classified according to the fields of morality, religion, and culture. The post-test achievement scores of the students in all learning areas were higher than the pre-test achievement scores. This shows that religious education in the support training room based on individualized education plan contributes positively to the success of the student. The results of the retention test are close to the results of the final test. In addition, it was determined that the students were affected by the society, especially by their peers, structured the religious knowledge when given time, they understood the religious behaviors of the normal individuals, became more emotional, forgot the religious information that is not used in daily life, increased their self-confidence and self-esteem as they succeeded and internalized the values. Based on these results, the following recommendations have been developed.Support Education Rooms should be functionalized and special attention should be given to individual or group-based religious education based on the nature and objectives of the subject in these rooms.In religious education, by taking into account the performances of mentally retarded inclusion students (MHIS), the relevant dimension of religion should be given importance according to their contribution to their normal lives and they should be consistent and patient in this process.Since MHIS has different levels of learning and perception and different developmental characteristics at every stage of life, it should prioritize their proper use of their existing capacities based on their religious education, interests and curiosities.Since MHIS is influenced by the emotion dimension rather than the information dimension of religion, religious education for them should be oriented towards life, which is not academic, literal or doctrinal, but rather their life and feelings.Similar studies with different study group students must be done and the results of the study should be interpreted comparatively. 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In using quality of life as a guide to rationing health services, Oregon laid itself open to charges of bias against the disabled—charges that cannot be dismissed out of hand.

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered (...) by loss of mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (shrink)

The aim of the present paper is to describe three different attempts, which have been made by philosophers, to define what quality of life is; and to spell out some of the difficulties that faces each definition. One, Perfectionism, focuses on the capacities that human beings possess: capacities for friendship, knowledge and creative activity, for instance. It says that the good life consists in the development and use of these capacities. Another account, the Preference Theory, urges that satisfying one's preferences, (...) or desires, is what improves one's quality of life. And a third account, Hedonism, sees life-quality as consisting in the enjoyment of pleasure and the avoidance of pain. The paper describes and evaluates objections to each of these views, thereby displaying their weaknesses and strengths. Since no view comes out as the right one there is a choice to be made. At the end of the paper it is being discussed how well each of the views cohere with different methodologies used in quality of life research. Also it is suggested that considerations about what the research is to be used for are relevant. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:History of Philosophy and the Reflective Society by Riccardo PozzoRobert R. ClewisPOZZO, Riccardo. History of Philosophy and the Reflective Society. Berlin: Walter de Gruyter, 2021. vi + 231 pp. Cloth, $94.99In a forward-looking proposal, Pozzo lays out his vision for a multidisciplinary history of philosophy "from a global perspective." This book is "a long position paper, an extended essay dedicated to twenty-first century policies of philosophical research from (...) a global perspective." The chosen format is a Denkschrift, that is, a memorandum in the sense of a document that experts lay out for their government to ponder. Perhaps, Pozzo suggests, the history of philosophy could even have an impact on economic authorities and policymakers. Indeed, the work seems driven by the laudable aim of promoting access and equality around the world. The author reveals a just concern for migrants in particular, since they bring [End Page 156] with them their intellectual traditions and philosophical texts, which can be translated and thereby foster intercultural dialogue.The book consists of an introduction (chapter 1) followed by nine chapters. It has a thirty-page references list as well as subject and name indexes. In part one, Pozzo argues for the need for new narratives in the history of philosophy (chapter 2), in order to establish its role in addressing migration (chapter 3). The second part concerns reflective society (chapter 4). It considers societal readiness (chapter 5) and cultural innovation (chapter 6). Part three explores the paradigm shift from a close reading of texts to a "distant" reading of corpora (chapter 7), a shift Pozzo endorses. It examines implications for the translation of languages (chapter 8) and the translation of studies (knowledge) and competencies (chapter 9). Chapter 10 concludes by briefly reflecting on the notions of the "fluidity" of peoples and their ideas, biodiversity (and food), and spiritual humanism based on dignity.Scholars in the history of philosophy "should be open to the idea of a pluriversum of a history of facts and places, whereby history of philosophy finds its grounding in spatial heterogeneity." Nowadays, when people migrate and transfer competencies at increasing velocity, the "history of philosophy can be usefully reinvented on the basis of its consideration of intercultural dialogue." Pozzo considers the World Digital Library to be "one of the most exciting examples of corpora that talk to each other"—an idea he uses not merely metaphorically. By "corpora" is meant not just the sum of separate books, but XML-accessible complete collections of traditions of texts, with corresponding dictionaries, thesauri, and reference works, which make it possible to analyze a number of original texts as well as transliterations into other alphabets or hanzi characters. The result would be a "data-driven" history of philosophy.Given that history of philosophy is a product of culture, it is influenced by migrating peoples, who bring philosophical ideas and religious traditions with them. Research on migration thus ought to also consider translations of texts and competencies from one to another context, be it linguistic, economic, political, or cultural. The humanities, and a reflective society more generally, might provide a partial basis for intercultural dialogue. The history of philosophy might even thereby improve the quality of life of citizens.Pozzo rightly emphasizes that we need multilingual philosophers and historians of philosophy. History of philosophy ought to also be based on robust lexical and historical considerations, and historians of philosophy should be trained in a number of the world's languages as well as face the challenge of dealing with multilingualism and with validating translations. Pozzo's proposed methodology, informed by computational techniques, relies on tools such as vocabularies, ontologies, concordances, frequencies, or the analysis of texts and corpora, which integrates quantitative and formal methods into the portfolio of the methods of history of philosophy and intellectual history. Since Pozzo has published [End Page 157] widely on Kant, it is fitting that he explores Kant on migration as well as the editorial contexts and translation projects concerning the philosopher's writings.As for aesthetics, Pozzo notes that the history of philosophy can reflect on migrants' cultural and artistic creations. Historians of philosophy should thus start observing and interpreting phenomena created by... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Aesthetic Potential of Global Issues CurriculumWilliam Gaudelli (bio) and Randall Hewitt (bio)IntroductionGlobal issues rarely suggest conversations about aesthetics, as they conjure thinking about massive problems such as global warming, famine, and war rather than beautiful thoughts such as grace, love, and compassion. Students may engage in study of global issues in any number of venues, perhaps through a world geography class, within world literature, or as part of (...) a course in Earth science. They would likely be exposed to readings, Web sites, and videos about the nature and extent of problems. Teachers might engage them in small and large group discussions of problems, and, ideally, there would be some consideration of what they might do as citizens. Such processes, their outcomes, and subsequent civic directions are generally not regarded as aesthetic acts, however. One is likely to consider the aesthetic value of a piece of art, a song or poem, movie or performance, but to speak of activities like teaching global issues being aesthetic seems discordant.Yet, this is not so within John Dewey's notion of aesthetics. He argues that aesthetics can exist outside of museums and beyond theaters, potentially in social discourse. Activities like public talk, while not as inherently pleasing as listening to music, have the potential to be experienced as aesthetic:Hence an experience of thinking has its own esthetic quality. It differs from those experiences that are acknowledged to be esthetic, but only [End Page 83] in its materials … [T]he experience itself has a satisfying emotional quality because it possesses integral integration and fulfillment reached through ordered and organized movement … In short, esthetic cannot be sharply marked off from intellectual experience since the latter must bear an esthetic stamp to be itself complete.1Dewey's contention that all types of activity, from repairing an automobile to discussing species extinction, can point toward transcendence has not achieved widespread recognition among philosophers, nor has its utility been demonstrated in curriculum.2 Aesthetics and art are still largely confined to the museum, hermetically sealed off from everyday experiences in a Schillerian "ideal kingdom."3 To suggest curriculum, schools, and pedagogy as potential landscapes for artwork far removed from the museum is to render oneself a heretic in many quarters of educational discourse.Yet, there is a despondency and desperation about schools, and thereby curriculum, that too often fail to teach for and about something more than narrow, capitalist-driven, techno-rationalist ends. Constructivist orientations in teaching, for example, have contributed to shifting the manner of teaching but have done relatively little to reframe the ends of learning. Metaphorically, constructivism is a spoon of sugar to help swallow the bitter pill that is learning for and as work. What is lacking in this conceptualization, according to Parker Palmer, Nel Noddings, and Aostre Johnson, is an aesthetic and spiritual rationale for learning that honors the sanctity of students beyond their academic capacities, values the processes of learning as much as its outcomes, and seeks a space for learning that is transcendent.4What we seek in this article with Dewey, then, is an antidote for the malaise that has befallen curriculum, one that is rooted in an aesthetic way of thinking instantiated in a most unlikely candidate: teaching about global issues. We begin by briefly outlining some of Dewey's thinking related to aesthetics, particularly as it germinated in his career and biography. We then turn to the work of contemporary scholars in education who have similarly found value in Dewey's notion of aesthetics. Finally, we draw an illustration from a recent study of student focus groups engaged in reading global media. This student conversation about the potential cataclysm of global warming demonstrates the surprising capacity of such bleak policy discussions to generate aesthetic moments. The significance of this work lies in its potential to contribute to a broadened curriculum discourse that aims toward living an aesthetically resonant life in classrooms and wider social environs while augmenting and enhancing the rationalistic focus of contemporary schools and, indeed, the study of global issues.Deweyan Aesthetics and BiographyWe begin by weaving Dewey's biography with his notion of aesthetics as an internal process of... (shrink)

Background: Meaning in life of older persons is related to well-being, health, quality of life, and “good life.” However, the topic is scarcely covered in nursing literature. Objective: The aim of this integrative review for nurses is to synthesize knowledge from scholarly literature to provide insight into how older persons find meaning in life, what are influencing circumstances, and what are their sources of meaning. The review serves as a starting point for including meaning in life of older persons as (...) a major concern for nurses in their role as health promoters. Method: An integrative review was performed including empirical research literature and texts on theoretical perspectives. Ethical consideration: Researches agree with ethical codes for research of universities in the Netherlands. For literature reviews no additional procedures are necessary according to Dutch law. Findings: A total of 44 heterogeneous texts were included in this review. Finding meaning in life is challenging for older persons. Older persons find meaning through a developmental process, by creating and discovering. Meaning in life is found in connection with self and others. Health, living together, high socio-economic status, social relations, activities, and religion are associated with experiencing meaning in later life. The main source of meaning in life of older persons is human relationships. Other sources of meaning in life vary by age and culture. Discussion: The review provides insight into meaning in life of older persons. There are several gaps in knowledge: literature is culturally biased, research on discovery of meaning and daily meaning is limited, and research from a nursing perspective is lacking. In practice, nurses have many opportunities to attune to meaning in life of patients. Further development of competence and training are needed. Conclusion: Older persons find meaning in life through different processes. Meaning in life is associated with the circumstances old persons live in. Human relationship is the major source of meaning. The knowledge from this review is a necessary knowledge base for nurses to include meaning in life of older patients in care. Further research is needed to explore the role of nurses. (shrink)

Introduction. The authors clarify and expand the concepts of heterogeneity properties of regional socio-economic and digital spaces. Heterogeneity of space is associated with the regional uneven development and results in their socio-economic and digital differentiation, which, in turn, determines unequal conditions for ensuring the population’s life quality. In the context of the study, heterogeneity of the regional space is defined as a property of uneven spatial development of the Russian Federation’s constituent entities according to the territorial, sectoral, and temporary characteristics (...) that determine and affect the level and quality of life of the population. The citizens’ life quality throughout the country is an absolute priority of economic development at the federal and regional levels. Indeed, only then should we speak of a positive assessment of economic growth when it does not follow the path of the previous inefficient development, but is aimed at achieving a real improvement in people’s wellbeing [3; 4; 17]. Taking into consideration the particular importance of social priorities and their implementation throughout the country, the authors think it necessary to study the properties of the economic space, to determine their impact on the population’s life quality. The aim of the study is to analyze the effect of heterogeneity of the regional socio-economic and digital spaces on the population’s life quality in the Russian Federation’s constituent entities. Methods. To conduct the study, the authors make use of statistical analysis based on the data of the Russian Statistics Agency, Moscow School of Management Skolkovo, Russian Information Agency Rating; content analysis, methods of comparative analysis and positioning of regions. The scientific novelty of the study consists in expanding ideas about heterogeneity of the regional space from the standpoint of the regional socioeconomic situation and the level of their digitalization, which result in differentiating the Russian Federation’s subjects and unequal conditions for the people’s life, to a different extent affecting the population’s life quality throughout the country. In methodological terms, the study is supplemented by a pairwise comparison of the regional space characteristics and the multivariate positioning of regions in the coordinates: socio-economic space - quality of life; digitalization is a quality of life. Results. The authors study the impact of integrated indicators of the socio-economic situation of the regions, their digitalization level on the population’s life quality in the Russian Federation’s constituent entities. At the same time, the authors apply a comparison of various integral nature of the regional space indicators used, as a rule, autonomously, for multi-characteristic typologies (groups of regions I—IV and groups of regions A—D), by means of which a group of the most powerful regions was identified where the life quality is associated with the best socio-economic situation and active digitalization of these regions. Conclusions. It was found that uneven economic and digital territory development leads to interregional differentiation of the population’s life quality, as a result of which the leading regions and the outsider regions are distinguished, characterized by unequal conditions for the citizens’ life. The typology made it possible to identify groups of regions for which selective measures are needed to increase the level and quality of the population’s life. For some regions, the priority is to use their economic potential and new digital technologies, for others, active interregional interaction; the third (the weakest) cannot provide a decent standard of living without profound government support. (shrink)

There is no technical language with which to speak of patients' quality of life, there are no standard measures and no authority to validate criteria of measurement. It is well known that 'professionals' tend, often for institutional reasons, to play down or undervalue factors which are not defined by their particular expertise. It is fortunate that, despite this tendency, there is a growing interest in broadening the evaluation of medical care, but there is still a need to clarify what is (...) at issue in considerations of quality of life. This article examines the strengths and weaknesses of one approach to assessing quality of life, and sketches out the implications for anyone concerned to establish a framework within which both medical and non-medical objectives of care can be taken into account. (shrink)

ContextPeople with mental disorders can acquire long-term disabilities, which could impair their functioning and quality of life (QoL), requiring permanent care and social support. Systematic data on QoL and functioning, which could support a better management of these people, were not available.ObjectiveTo analyze the QoL, level of functioning and their association with sociodemographic and clinical factors of people with mental disorders who underwent deinstitutionalization using assisted living facilities.MethodsA Cross-sectional study was conducted between July 2018 and July 2019, through interviews using (...) the World Health Organization Quality of Life (WHOQOL-BREF) to determine the QoL scores, and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) to determine the level of functioning. All adults (≥18 years old) with mental disorders, who underwent deinstitutionalization, users of assisted living facilities and assisted by the Psychosocial Assistance Centers III, in a city in the state of São Paulo, Brazil, were selected. For statistical analysis of the associated factors, Student’st-test was used for dichotomous variables and ANOVA for polynomial variables. Pearson correlation coefficient was used to measure the association between QoL and functioning scores.ResultsOut of 359 people who underwent deinstitutionalization with mental disorders, 147 met the eligibility criteria. The mean total score for the WHOQOL-BREF was 66.5 ± 13.4 and the mean score for WHODAS 2.0 was 10.4 ± 7.6. An association was found between people who were studying (n= 65.8; 95%CI, 63.5–68.1vs. n= 73.9; 95%CI, 67.5–80.3;p= 0.04) and better WHOQOL-BREF QoL scores or WHODAS 2.0 levels of functioning (n= 10.9; 95%CI, 9.6–12.2vs. n= 5.1; 95%CI, 2.5–7.7;p= 0.01). A weak negative correlation (r= 0.41) emerged between higher QoL scores and functioning improvement.ConclusionThis study indicates that the QoL of the sample is associated by their functioning levels, which, in turn, may reflect on their social interactions. Public policies that favor interventions increasing socialization of this population can result in better health outcomes. The QoL and functioning scores provide valuable insights to develop public policies more suited to this population profile. (shrink)

The technological advances in medicine, including prolongation of life, have constituted several dilemmas at the end of life. In the context of the Belgian debates on end-of-life care, the views of Muslim women remain understudied. The aim of this article is fourfold. First, we seek to describe the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward withholding and withdrawing life-sustaining treatments. Second, we aim to identify whether differences are observable among middle-aged and elderly women’s attitudes toward withholding (...) and withdrawing life-sustaining treatments. Third, we aim to explore the role of religion in their attitudes. Fourth, we seek to document how our results are related to normative Islamic literature. Qualitative empirical research was conducted with a sample of middle-aged and elderly Moroccan Muslim women living in Antwerp and with experts in the field. We found an unconditional belief in God’s sovereign power over the domain of life and death and in God’s almightiness. However, we also found a tolerant attitude, mainly among our middle-aged participants, toward withholding and withdrawing based on theological, eschatological, financial and quality of life arguments. Our study reveals that religious beliefs and worldviews have a great impact on the ethical attitudes toward end-of-life issues. We found divergent positions toward withholding and withdrawing life-sustaining treatments, reflecting the lines of reasoning found in normative Islamic literature. In our interviews, theological and eschatological notions emerged as well as financial and quality of life arguments. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

Ethics and Qualities of Life looks at what enters into ethical judgment and choice. Interpretation of a case and of what the options are is always a factor, as is a sense of the possible values at stake. Intuitions also enter in, but often are unreliable. For a long time it seemed only fair that oldest sons inherited, and struck few people as unfair that women were not allowed to attend universities. A moral judgment is putatively part of a moral (...) order in a society that any reasonable person would accept. But what counts as "reasonable" is generally contestable. The unreliability of intuitions leads naturally to ethical theory. Kantian, contractualist, and consequentialist theories all have some important truth in them, but not the whole truth. Contractualism lacks the resources required for a fully determinate account of what counts as "reasonable". Broad general rules are important to Kant and are at the center of everyday morality. But can Kantian ethics explain why they have to have this central role? Our evolving social contract now contains elements that once would have seemed counter-intuitive to most people. But could consequentialists have predicted with entire confidence the consequences of social changes that we now think were desirable? The last part of this book contains a double argument. One is that ethical theory is employed by humans in a state of semi-ignorance of relevant factors, grasping at likely truths and evolved intuitions. The other is that consequentialist considerations have a major role at the fundamental level, but much more in justification or criticism than in ethical discovery. (shrink)

Background:The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered to (...) be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years?Research question:The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation.Participants:Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia.Ethical considerations:Ethical processes and procedures have been adhered to by the researchers.Findings:A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field.Conclusion:Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice. (shrink)

People with disabilities are often denied equal access to organ transplantation despite long‐standing federal nondiscrimination mandates. Under the Americans with Disabilities Act and the Rehabilitation Act, people cannot be excluded from consideration for organ transplantation because of disability itself, or because of stereotypes or assumptions about the value or quality of life with a disability. Instead, decisions concerning whether an individual is a candidate for organ transplantation should be based on an individualized assessment of the patient and on (...) objective medical evidence. Recent legal developments underscore these basic guarantees and signal a new focus on the policies, practices, and attitudes that continue to compromise equal access to life‐saving organ transplants for people with disabilities. (shrink)

The subject of the paper is the philosophical aspects of the quality of life. Although in philosophical terminology this notion is not used very often, the question “What is a good happy and high-quality human life?” is one of the earliest in the anthropological philosophy. Philosophical questions concerning this problem might therefore be inspiring, and determining for the theoretical and methodological orientations of the researches in this field. The author approaches the quality of life from three points of view: (...) from the point of view of the ontological difference – as a certain ontological modus, as an ontic experience and as a substantive, existential characteristic of being. According to the author the fundamental element of the quality of life as a whole is the compensation of existential anxiety and focusing on the meaning of life. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:248 HISTORY OF PHILOSOPHY be taken from a philosophical point of view. Since it is not certain whether the author of the Prolegomena was or was not a Christian (p. xlix), "god" should not be capitalized, and the translation of T&~ia 5~l~ttovo'f~l~taTa as "God's creation" at IV. 15. 6 is actually misleading. Moreover, for no apparent reason, 0~oX07tz6gis translated as "metaphysical" in the first four chapters, but as "theological" (...) thereafter. Inaccuracies are very few indeed. "Ungrateful" is peculiar for o~5~5t• at I. 2. 25, and so is "adapted state" for ~to~tTe[a~ ~no~ae0g at I. 5.35; X. 26. 38, 40, and 44; at II. 10. 11, there is no need to translate o~Te&0t~6)g bu~yovxctL as "they do not aim at accurate expression," and on p. 32, line 1, "as yet" is not in the Greek of the Prolegomena, although it should have been, if the Anonymous had quoted correctly from Plato, Phaedrus 229 E. But this is trifling criticism of a work which leaves nothing to be desired in any other respect, and which displays the same high qualities of scholarship which we have come to expect of the author on the basis of his earlier achievements. MARTIN OSTWALI) Swarthmore College The Fountain of Life (Fons Vitae). By Solomon ibn Gabirol (Avicebron). Specially abridged edition, translated from the Latin by Harry E. Wedeck, with an Introduction by Theodore E. James. (New York: Philosophical Library, 1962. Unpaged introduction, 133 pp. $4.75.) The romance of the nineteenth-century discovery, by Salomon Munk, that "Avicebron's" Fons Vitae, a major source of neoplatonic thought in the thirteenth and fourteenth centuries, was actually the work of the eleventhcentury Hispano-Jewish poet, Solomon ibn Gabirol, and has often been retold. It is, indeed, a remarkable story. Perhaps its most noteworthy feature is that it reveals how closely alike Muslim, Jewish, and Christian philosophers were; by implication, then, it indicates that theological considerations were of less importance in medieval philosophy than is suggested by most historical accounts. Although the story of The Fountain of Lqe has now become an oft-told tale, the work itself has never been available in English dress. The present edition remedies this situation in part. It presents Tract III of the original text, a section dealing with the existence of simple spiritual substances. Harry Wedeck's translation is lucid and readable. Theodore E. James's introduction is useful for the beginning student but too elementary to be of much use to a more advanced reader. It is good that there is now this much to recommend to our students; we may hope that the day will come when BOOK REVIEWS 249 larger sections of the work will be translated-preferably not from the Latin, but from the Arabic original. JOSEPHL. B~u Columbia University Commentary on the Metaphysics of Aristotle. By St. Thomas Aquinas. Trans. by John P. Rowan. (Chicago, Illinois: Henry Regnery Company, 1961. Pp. xxiii + 955.2 vols., boxed, $25.00.) Generally speaking, the two Summae of St. Thomas, long available in English translation, contain all that is most personal and most profound in his philosophical thought. Nonetheless, it is quite impossible to get a fully adequate conception of St. Thomas' place in the history of western thought from a consideration of his theological writings alone. Hence, by translating St. Thomas' Commentary on the Metaphysics of Aristotle into English, Professor J. P. Rowan has provided the non-Latin reading student of the history of philosophy an invaluable service. For it is in his r61e as Aristotelian commentator that we see St. Thomas creating for the Schoolmen a version of Aristotle which served to render the Stagirite's thought into terms which became fundamental to the philosophical defense of Christianity. Further, by keeping in mind the fully-developed notions of St. Thomas on the existence of God and the nature of being as these are given us to understand in the Summae, the reader becomes better enabled, by a critical reading of Thomas' Commentary, to grasp the sense in which the Saint's theological writings are said by his enthusiasts to represent a "completing" and "perfecting" of... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Minding Brain Injury, Consciousness, and Ethics: Discourse and DeliberationsJoseph J. Fins (bio) and James Giordano (bio)The annual John Collins Harvey Lecture at the Georgetown University’s Pellegrino Center for Clinical Bioethics is a forum for addressing contemporary topics at the intersection of medicine and bioethics. This year, in marking the decadal anniversary of the launch of the Brain Research through Advancing Innovative Neurotechnology (BRAIN) Initiative, the Harvey Lecture provided an (...) interactive discussion with renowned clinician, researcher, scholar, and author, Joseph J. Fins, MD—who is the E. William Davis, Jr., MD Professor of Medical Ethics, Chief of the Division of Medical Ethics, and a Professor of Medicine at Weill Cornell Medical College—conducted by James Giordano, PhD, MPhil—who is a Professor of Neurology and Biochemistry, and Chief of the Pellegrino Center’s Neuroethics Studies Program at the Georgetown University Medical Center. The discourse focused upon the topic of covert consciousness, and the ways in which current and developing brain science technologies, together with revised practices of medicine, in general, may afford new opportunities in patient care, but may also give rise to issues, questions, challenges, and opportunities for neuroethics.Prof. James GIORDANO:Prof. Fins, your most recent book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness (Fins 2015), addresses your ongoing work to employ current and emerging neurological approaches to reveal conscious functions in patients with profound brain injury and disease. To be sure, the destination—if you will—is to talk about covert consciousness. But in commencing this discussion, I’d like to propose a route, which traces your professional journey to this point in your career, and how it led you on your search to reveal consciousness in those patients who lack expressive capability. You went into palliative care first, and that brought you to where you are today. [End Page 227]Prof. Joseph J. FINS:First, let me thank you and the Pellegrino Center for the honor of giving the John Harvey Collins Lecture in such an interactive manner. The forefront of neurological care—and the neuroethical issues and methods focal to such practice—wasn’t what I initially intended to do professionally, but I think that therein is a good lesson for young people’s career aspirations. Simply put, one doesn’t always know where they’ll end up at the beginning of the journey, and as Kierkegaard said, life is lived forward, but is understood backwards (Kierkegaard 1843).In the nineties and the early 2000s, I was trying to help improve the quality of care of people at the end of life, and I wrote a book, entitled The Palliative Ethic of Care: Clinical Wisdom at Life’s End (Fins 2006), in which I addressed notions of phronesis—practical wisdom—in integrating theory and practice toward improving how people die. I became interested in the Quinlan case (Quinlan 1976), and the right to die, and around the same time, I ran into a colleague of mine at Cornell: Dr. Nicholas D. Schiff. Dr. Schiff is a neurologist, who was a protégé of Fred Plum, who was the originator of the concept of the vegetative state with Bryan Jennett, back in 1972. Fred was both of our teachers here at Cornell. Niko (Dr. Schiff) was interested in patients with disorders of consciousness, and was beginning to envision doing work—that ultimately, we did—using deep brain stimulation (DBS) to try to treat patients in the minimally conscious state, a category that was subsequently codified in 2002.I realized that a whole population of people—with these disorders of consciousness—had been somewhat marginalized, and their neglect essentially devolves back to the considerations of the right to die. The right to die was established in the Quinlan case because Judge Hughes—the presiding chief judge of the New Jersey Supreme Court—talked about Ms. Quinlan’s loss of a cognitive, sapient state as being the moral warrant for her right to die, given the fact that it was viewed as a futile situation. I recognized, over the ensuing years—from my background in palliative and end-of-life care—[1] that we had over-generalized notions of futility... (shrink)

Ethical Considerations at the Intersection of Psychiatry and Religion aims to give mental health professionals a conceptual framework for understanding the role of R/S in ethical decision-making and serve as practical guidance for approaching challenging cases. Part I addresses general considerations, including the basis of therapeutic values in a pluralistic context, the nature of theological and psychiatric ethics, spiritual issues arising in diagnosis and treatment, unhealthy and harmful uses of religion, and practical implications of personal spirituality. Part II (...) examines how these considerations apply in specific contexts: inpatient and outpatient, consultation-liaison, child and adolescent, geriatric, disability, forensic, community, international, addiction and disaster and emergency psychiatry, as well as in the work of religious professionals, ethics committees, psychiatric education, and research. Thick descriptions of case examples analyzed using the framework of Jonson and Winslow show the clinical relevance of understanding the contributions of religion and spirituality to patient preferences, quality of life, decision making, and effective treatment. (shrink)

In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to choose what (...) we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to choose what (...) we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)

into treatment decisions is viewed as pernicious by some who claim that these presuppose the Nazi position that those who are ‘devoid of value’ must be exterminated. ‘Quality of life’ judgments are said to deny the equal value of human beings and to assume that some lives are not ‘worthy to be lived’. It is argued that the analogy misconstrues the senses of ‘value’ and ‘quality’ employed by Naziism and a ‘quality of life’ position. This leads the analogizers incorrectly to (...) claim that both views assimilate the value of human beings to the value of their condition. A ‘quality of life’ position is grounded in recognition of the logical priority of the value of human beings as self-reflective evaluators and agents, which is a matter of kind, not degree. The ‘quality of life’ is explicated in terms of the standards of well-being of individuals, which are derived from their basic human needs and their individual priorities and goals. The use of ‘quality of life’ judgments is morally required to ensure that considerations of justice and individual autonomy govern treatment decisions. The purported analogy misconstrues the views of both the Nazi position and a ‘quality of life’ position and so is seriously misdirected. CiteULike Connotea Del.icio.us What's this? (shrink)

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain (...) opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18–40 years) living with HMV. Data were co‐constructed virtually through an initial interview and photo‐elicitation using participant‐generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently. (shrink)

Whose values should count – those of patients or the general public – when adopting the quality-adjusted life year framework for healthcare decision making is a long-standing debate. Specific disciplines, such as economics, are not wedded to a particular side of the debate, and arguments for and against the use of patient values have been discussed at length in the literature. In 2012, Sinclair proposed an approach, grounded within patient preference theory, which sought to avoid a perceived unfair discrimination against (...) people with disabilities when using values from the general public. Key assumptions about general public values that beget this line of thinking were that ‘disabled states always tally with lower quality of life’, and the use of standardised instruments means that ‘you are forced into a fixed view of disability as a lower value state’. Drawing on recent contributions to the health economics literature, we contend that such assumptions are not inherent to the incorporation of general public values for the estimation of QALYs. In practice, whether health states of people with disabilities are of ‘lower value’ is, to some extent, a reflection of the health state descriptions that members of the public are asked to value. (shrink)

The ‘Ashley treatment’ has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are philosophically robust. (...) I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life, I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity, I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face. (shrink)

Joel Kupperman's latest book is a wide ranging discussion of many of the leading issues in contemporary ethical theory. Its main aim is to advance a view which he calls "multi level indirect consequentialism" as a viable alternative to traditional act and rule consequentialist positions. Such a view purports to secure many of the agent centered constraints and options which are familiar from ordinary morality, as well as to take seriously considerations of fairness and respect for persons. Needless to (...) say, Kupperman's project is ambitious, and his book provides us with a preliminary sketch of the proposal. In what follows, I first summarize the two parts of Ethics and Qualities of Life and then offer some critical remarks. (shrink)

A 22-month longitudinal study of (self)employed disabled workers (_Following the preference of the lead author who identifies as disabled, the linguistic self-presentation by our participants, the precedent of _(Hein and Ansari, Academy of Management Journal 65:749–783, 2022)_, and the clarification note included in Jammaers & Zanoni’s recent review of ableism _(Jammaers and Zanoni, Organization Studies 42:429–452, 2021)_, we chose, and consistently use, the term “disabled employees” throughout the paper. We do so to underscore the premise of the social model of (...) disability, which explains that “people are disabled first and foremost by society, not by their individual, biological impairment. To us this term most clearly highlights that it is society (and possibly organizations) that disable and oppress people with impairments, by preventing their access, integration and inclusion to all walks of life, making them ‘disabled’.” _(Jammaers and Zanoni, Organization Studies 42:429–452, 2021_: 448_)) models the growing centrality of the body in meaning-making. We inductively explain how body dramas of suffering or thriving initially instigate cycles of meaning deflation and inflation at work. Our disjunctive process model shows that, at the beginning of the pandemic, disabled workers performed either dramas of suffering or on dramas of thriving. However, as the global pandemic unfolded, disabled workers begun crafting composite dramas that deliberately juxtaposed thriving and suffering. This conjunctive process model stabilized meaning-making at work by acknowledging the duality of the disabled body, as both anomaly and asset. Our findings elaborate, and bridge, emerging theories of body work and recursive meaning-making to explain how disabled workers explicitly enroll their bodies to make meaning at work during periods of societal upheaval. (shrink)

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, (...) critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)