Quality of life is part of many different discourses and has been used in a variety of meanings ranging from purely descriptive (as in some medical contexts) to distinctly evaluative meanings (as in some social science and political contexts). The paper argues that there are good normative reasons to make the concept as descriptive as possible at least in its medical applications and, furthermore, to reconstruct it in a thoroughgoing subjectivist way, making the reflexive self-evaluation of the subject (...) him- or herself the ultimate standard. Attention is drawn to the fact that only few of the measures of quality of life applied in present-day medicine correspond to these requirements. (shrink)

Quality improvement mechanisms increasingly use outcome measures to evaluate health care providers. This move toward outcome measures is a radical departure from the traditional focus on process measures. More radical still is the proposal to shift from relatively simple and proximal measures of outcome, such as mortality, to complex outcomes, such as quality of life. While the practical, scientific, and ethical issues associated with the use of outcomes such as mortality and morbidity to compare health care providers (...) have been well rehearsed, the specific concerns associated with the use of quality of life measures in quality of care research have received little attention. As with much research on quality of life there is a tendency to assume that the disadvantages are outweighed by the general virtue of “listening” to patients. In this paper we disagree with this assumption and argue that quality of life is a process, not an outcome. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining agents. In this (...) paper I look at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

The main measure of quality of life is well-being. The aim of this article is to compare insights about well-being from contemporary philosophy with the practice-related opinions of palliative care professionals. In the first part of the paper two philosophical theories on well-being are introduced: Sumner’s theory of authentic happiness and Griffin’s theory of prudential perfectionism. The second part presents opinions derived from interviews with 19 professional palliative caregivers. Both the well-being of patients and the well-being of the (...) carers themselves are considered in this empirical exploration. In the third part the attention shifts from the description of “well-being” to prescriptions for the promotion of well-being. Our interview data are analysed in light of the theories of Sumner and Griffin for clues to the promotion of “well-being.” The analysis (1) underscores the subject-relativity of well-being, (2) points out that values that are considered important in every life still seem to be relevant (at least in palliative care practice), and (3) shows the importance of living a certain sort of life when aiming to enhance dying patients’ well-being. (shrink)

One of the fundamental aims of nursing is to safeguard or promote patients' "quality of life." Perspectives on Quality of Life examines existing ways of defining the concept and argues that nurses need to adopt a fresh approach, which more accurately reflects patients' concerns and helps them to develop practical ways of promoting the well-being of people in their care. Part One provides an analysis of statistical approaches to quality of life, including social indicators, (...) the Quality Adjusted Life Year (QALY), and the medical outcomes literature. Part Two proposes an alternative, qualitative approach to organizing care, which respects the patients' choice and individuality. Part three presents the findings of new research into the quality of life of older people in hospital wards. (shrink)

Under the Second Demographic Transition, alternative forms of living arrangement are on the rise. The aim of this article is to compare quality of life in children living in married and cohabiting families. We present the results of representative research conducted in Slovakia in 2018 (N = 1,010 respondents). We tested whether children brought up in traditional married families had better material resources and healthcare, fewer behavioural problems, better peer relations and spent more leisure time with their parents (...) than children brought up by cohabiting parents. We also investigated whether number of children in the family and net monthly household income affected the children’s quality of life. The results show that there were almost no differences in quality of life between children brought up by married and by cohabiting parents and that number of children in the family and level of net monthly household income affected only the child’s material resources. (shrink)

The Quality of Life: Aristotle Revised, by KrautRichard. Oxford: Oxford University Press, 2018. Pp. x + 249.

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)

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)

Due to advances in medicine, a malignant neoplasm is a chronic disease that can be treated for a lot of patients for many years. It may lead to profound changes in everyday life and may induce fear of life. The ability to adjust to a new situation may depend on temperamental traits and stress coping strategies. The research presented in this paper explores the relationships between quality of life, PTSD symptoms, temperamental traits, and stress coping in (...) a sample of patients diagnosed with cancer. One hundred and twenty nine participants aged 24–81 years, 69 females diagnosed with breast cancer and 60 males diagnosed with lung cancer completed Formal Characteristics of Behavior – Temperament Inventory, Coping Inventory for Stressful Situations, PTSD Inventory, and Quality of life SF-36 questionnaire. Higher level of emotional reactivity and higher level of perseveration was associated with lower emotional quality of life. Higher level of emotion oriented-coping and higher level of avoidant-distracted coping was associated with higher level of PTSD symptoms. Emotion-oriented coping and avoidant-distracted coping are ineffective in dealing with stress in the case of patients diagnosed with cancer, because they are associated with a higher level of PTSD symptoms. The significance of temperamental traits for quality of life in the situation of the patients is marginal. Control of specific factors concerned with current health and treatment status is needed the future research. (shrink)

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 (...) class='Hi'>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)

In recent years, there has been a growing emphasis on researching quality of life,particularly within families that include members with disabilities. Family Quality ofLife (FQOL) has gained prominence in special education as researchers seek to understandand improve the well-being of these families. This study aims to present findingson the quality of life of parents raising children with disabilities.Using a quantitative research approach and the validated BCFQOL tool, wesurveyed 205 parents. The results were unexpectedly positive, showing (...) generally higherlevels of quality of life among participants. However, challenges were identified in specificdimensions such as “Emotional well-being,” and “Material well-being”. (shrink)

Although healthcare workers play a crucial role in helping curb the hazardous health impact of coronavirus disease 2019, their lives and major functioning have been greatly affected by the pandemic. This study examined the effects of the COVID-19 pandemic on the quality of life of Malaysian healthcare workers and its predictive factors. An online sample of 389 university-based healthcare workers completed questionnaires on demographics, clinical features, COVID-19-related stressors, psychological experiences, and perceived social support after the movement lockdown was (...) lifted. All domains of QoL were within the norms of the general population except for social relationship QoL, which was lower than the norm. Multiple linear regression analysis indicated that COVID-19-related stressors and psychological sequelae predicted lower QoL. Conversely, greater perceived social support from friends and significant others predicted higher QoL. Clinical and demographic characteristics predicted QoL to a lesser extent: A history of pre-existing medical illness was associated only with lower physical health QoL, whereas older age and being single, divorced, or widowed were only predictive of higher environmental QoL. Efforts to enhance QoL among healthcare workers in response to the pandemic should focus on mitigating COVID-19-related stressors and psychological sequelae and facilitating social support. (shrink)

Richard Kraut presents a new theory of human well-being. Kraut's principal idea, Aristotelian in spirit, is that 'external goods' have at most an indirect bearing on the quality of our lives. A good internal life - one with quality emotional, intellectual, social, and perceptual experiences - is what well-being consists in.

The term "quality of life" has a long history in the bioethics literature. It is usually used in one of two contexts: in resource allocation discussions in the hope of arriving at an objective measure of the worth of an intervention; and in end-of-life discussions as a concept that can justify the forgoing of life-sustaining treatment. In both contexts, the term has valid uses as it is meant to measure the efficacy of a treatment. However, the (...) term has the unfortunate rhetorical problem that it often seems to be a judgment on the life of a human being. As such, it is highly inflammatory. We suggest that a return to a rhetoric that suggests a judgment on the treatment rather than the person is needed. (shrink)

The basic work for this book was carried out during the spring of 1989 in Edinburgh, where I had been granted a research position at The Institute for Advanced Studies in the Humanities. I should like to express here my indebtedness to the Institute for the opportunity thus afforded me. I should also like to say how very grateful I am for the stimulating conversations I had there with Professor Timothy Sprigge and Dr. Elizabeth Telfer. Dr. Telfers’s own treatise Happiness (...) has been a major influence on my view of the questions involved. The basic view of health and illness presented in this book is more fully set out in my On the Nature of Health. As in the case of my previous larger projects, I have received a great amount of support and may wise comments from Professor Ingmar Pörn, Helsinki. Three Danish experts – Anton Aggernaes, Erik Ostenfeld and Peter Sandøe – have made valuable comments. Professor Heng ten Have, Nijmegen, has improved my reading of the philosophy of Jeremy Bentham. I should also like to thank my colleagues at the Department of Health and Society, University of Linköping, for helping me to avoid a number of the pitfalls that can so easily stumble into when it comes to a treatise like this. Especially I should like to mentioned Per-Erik Liss, Ingemar Nordin and Bo Petersson, all three of whom have read and commented on the entire manuscript. A Swedish version of this book, Livskvalitet och hälsa, came out in 1991. I have been made quite a number of corrections and additions, one type of addition being replies to critical points made in reviews of the Swedish version. I should like to thank Malcolm Forbes for valuable help putting my English into publishable condition. Linköping, May 1993 Lennart Noredenfelt. (shrink)

Quality of life is a difficult concept to define and to measure. An hypothesis is proposed which suggests that the quality of life measures the difference, or the gap, at a particular period of time between the hopes and expectations of the individual and that individual's present experiences. Quality of life can only be described by the individual, and must take into account many aspects of life. The approach is goal-orientated, and one of (...) task analysis. The hypothesis is developed in a diagramatic way, and several methods of testing the hypothesis suggested. (shrink)

Purpose: This article aims to highlight key indicators of residents' quality of life in a specific contemporary building in Kruja, Albania. -/- Design/Method/Approach: A questionnaire with 30 questions was prepared for the inhabitance, and the Binary or Tobit probabilistic models were taken into consideration as part of the methodology, to conclude. The study will further analyze the implications of the inhabitants and their behavior in a specific contemporary building in the city of Kruja. It was examined the statistical (...) significance of each variable (questions) in the models elaborated with EViews 8 software. The stable models that are associated with the “Log-likelihood” statistics were statistically significant at a significance level of p < 5%, or with 95% confidence, based on the model tests. -/- Findings: The study concluded that the most statistically significant quality of life indicators part of the questionnaire is related to the typology of the apartments, methods of cooling during summer, present living conditions, apartment improvement, apartment orientation, and time spent in the living room. Furthermore, the study reveals that most of the quality-of-life indicators (part of the questionnaire) are not statistically important, so they will not be considered part of the models created in the article. The study reveals that increasing the living space and improving orientation is crucial to enhance the satisfaction of apartment inhabitants. When apartment sizes increase and orientation is improved, residents are more likely to opt for fans over air conditioners to reduce electricity costs and avoid installing additional cooling facilities during summer. They believe that better living conditions require larger apartments, additional water supply, increased electrical costs, and more time spent in the living room. The inhabitants also emphasize the importance of reducing moisture levels, decreasing window opening frequency, and increasing time spent with family. Interestingly, a one-degree improvement in summer cooling methods (e.g., switching from air blowers to air conditioning) corresponds to a one-degree improvement in winter heating methods (e.g., switching from gas to electricity), leading to a heightened need for clean electric heating. Overall, the study emphasizes the importance of meeting the physical and spatial needs of the residents to enhance their overall satisfaction and quality of life. Urban policies significantly impact housing affordability, quality, transport systems, environmental sustainability, and social equity, affecting overall living standards and economic growth. Cities must create well-designed policies that consider residents' needs and study findings to ensure sustainable development and citizen welfare. -/- Theoretical Implications: Gujarati’s (Basic Economics) theory was developed in the article. -/- Practical Implications: This study will serve as an indicator to analyze the further improvements that might occur in the specific building (not just in the city of Kruja), considering the main quality of life indicators. -/- Originality/Value: The article will serve as a base for further analysis of resident’s behavior and their social impact in the community in order to be aware of their needs for further developments in the construction field. -/- Research Limitations/Future Research: The findings depend profoundly on the type of building the residents are living in. The research stream that can be inspired by the research is strongly related to mathematical regression models, statistics, and probability. -/- Paper Type: Empirical . (shrink)

The odds of encountering a senior citizen selling on the street have increased. The claim that they have no choice but to work and sell on the street, despite the dangers, illnesses, and psychological issues they may face, to provide for their family’s needs is very evident. Therefore, this study explores the quality of life, lived experiences, challenges, and coping mechanisms of senior citizen street vendors in Bulacan, Philippines. The study employed Heideggerian Phenomenology and Interpretative Phenomenological Analysis (IPA). (...) Moreover, the following themes arise (1) Golden years, (2) Socially connected, and (3) Unknown journey. These themes highlighted the experiences and challenges faced by the participants. Moreover, it is highly suggested that local government agencies enhance and strictly monitor the existing program that alleviates mental and physical health concerns and senior citizens' safety and financial assistance. (shrink)

The aim of the article is to examine differences in the quality of life as well as gratitude, meaning in life and positive orientation to life between diocesan and religious seminarians and secular students. The influence of religiosity on quality of life and subjective well-being is the subject of numerous studies, but seminarians have rarely been included in them. The present research was carried out for the first time with a group of diocesan and (...) religious seminarians in Poland and secular students. The study involved 296 participants—98 diocesan seminarians, 96 religious seminarians and 102 secular students in the control group. Results showed significant differences in the quality of life. Religious and diocesan seminarians scored higher than the control group members in the psychophysical, personal, psychosocial and metaphysical spheres. In addition, in terms of gratitude, and the presence of meaning in life, religious and diocesan seminarians achieved higher scores than the control group but lower scores in searching for the meaning in life. There were no significant differences between diocesan and religious seminarians except that only diocesan seminarians obtained significantly higher scores on positive orientation to life than the control group. Overall, results support the idea that seminarians have higher quality of life and subjective well-being than secular students. Research implications are discussed. (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)

Objective The establishment of patient-centered measures capable of empirically determining meaningful cognitive change after surgery can significantly improve the medical care of epilepsy patients. Thus, this study aimed to develop reliable change indices (RCIs) and standardized regression-based (SRB) change norms for a comprehensive neuropsychological test battery in the German language. Methods Forty-seven consecutive patients with temporal lobe epilepsy underwent neuropsychological assessments, both before and 12 months after surgery. Practice-effect-adjusted RCIs and SRB change norms for each test score were computed. To (...) assess their usefulness, the presented methods were applied to a clinical sample, and binary logistic regression analyses were conducted to model the odds of achieving improvement in quality of life (QOL) after surgery. Results The determined RCIs at 90% confidence intervals and the SRB equations for each test score included in the test battery are provided. Cohen’s kappa analyses revealed a moderate mean agreement between the two measures, varying from slight to almost perfect agreement across test scores. Using these measures, a negative association between improvement in QOL and decline in verbal memory functions after surgery was detected (adjusted odds ratio = 0.09, p = 0.006). Significance To the best of our knowledge, this study is the first to develop RCIs and SRB change norms necessary for the objective determination of neuropsychological change in a comprehensive test battery in the German language, facilitating the individual monitoring of improvement and decline in each patients’ cognitive functioning and psychosocial situations after epilepsy surgery. The application of the described measures revealed a strong negative association between improvement in QOL and decline in verbal memory functions after surgery. (shrink)

ObjectiveTo determine the factors associated with quality of life and depressive symptoms in Peruvian university students during the COVID-19 pandemic.MethodsMulticentre study in 1,634 students recruited by convenience sampling. The quality of life was assessed with the European Quality of Life-5 Dimensions at three levels and depressive symptoms with the Patient Health Questionnaire-9. To assess factors associated with QoL and depressive symptoms, linear regressions and fitted regressions were used, with robust coefficients of variance information.ResultsA 345 (...) reported problems in performing daily activities, 544 reported pain and discomfort, 772 were moderately/very anxious or depressed. Furthermore, 207 had moderate-severe and severe depressive symptoms. Men reported better QoL than women and fewer depressive symptoms. Ayacucho’s residents had more depressive symptoms than Ancash’s residents and Piura’s residents had fewer depressive symptoms than Ancash’s residents. Students who left home during quarantine reported more depressive symptoms.ConclusionProblems performing daily activities, pain and discomfort, as well as mild to severe depressive symptoms were found in more than three-quarters of the sample. Authorities could consider depression care to improve quality of life in regions where high rates of infection occurred during the pandemic. (shrink)

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to (...) consider the appropriateness of parental refusal based upon an infant’s projected quality of life. (shrink)

BackgroundIn the last 2 weeks of January 2021, Portugal was the worst country in the world in incidence of infections and deaths due to COVID-19. As a result, the pressure on the healthcare system increased exponentially, exceeding its capacities and leaving hospitals in near collapse. This scenario caused multiple constraints, particularly for hospital medical staff. Previous studies conducted at different moments during the pandemic reported that COVID-19 has had significant negative impacts on healthcare workers’ psychological health, including stress, anxiety, depression, (...) burnout, post-traumatic stress symptoms, and sleep disturbances. However, there are many uncertainties regarding the professional quality of life of hospital nurses and physicians. To address gaps in previous research on secondary traumatic stress, we focused on healthcare workers working in hospitals affected by a major traumatic event: the third wave of COVID-19.ObjectivesThe aim of the present study was to identify the contribution of personal and work-related contextual variables on professional quality of life of healthcare workers.MethodsCross-sectional study with a web-based questionnaire given to physicians and nurses working in a hospital setting. A total of 853 healthcare professionals participated in the survey assessing professional quality of life compassion satisfaction, secondary traumatic stress, and burnout. Factors of professional quality of life were assessed using regression analysis.ResultsMost of the participants showed moderate or high levels of compassion satisfaction, whereas the majority of them experienced moderate levels of burnout and secondary traumatic stress. The analyzed variables demonstrated no differences between professionals who were directly or not involved in the care of COVID-19 patients. Parental status was found to be a significant factor in compassion satisfaction. Female gender was significantly associated with more susceptibility to secondary traumatization. Factors that may potentially contribute to burnout include years of professional experience and the number of work hours per week.ConclusionThe COVID-19 pandemic has created a new challenge for the healthcare system. Burnout and secondary traumatic stress can lead to medical errors and impact standards of patient care, particularly compromising compassionate care. It is therefore recommended that hospitals develop psychoeducational initiatives to support professionals in dealing with barriers to compassion. (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)

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy (...) and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (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)

Only in recent years have the German bioethical and biopolitical debates begun to decline due to rationalization concerning stem cell research or the pre-implantation diagnosis related to the ethical status of the beginning of human life. This is due to the fact that in these contexts we have to ask whether quality of life assessment is ethically acceptable in principle. A fundamental premise in the current debate is that quality of life assessment and human dignity (...) are incompatible. In this paper four different standards of quality of life assessment are distinguished (the naturalistic, the social, the interpersonal and the personal standard). Then an interpretation of human dignity is developed which rests on the essential feature of human beings to develop the capacity for personal autonomy. Finally it is argued that human dignity in this sense is compatible with quality of life assessments based on the personal and the interpersonal standard. (shrink)

Sufism has two main dimensions: vertical (God’s pleasure) and horizontal (harmony with nature, society and local wisdom). In reality, many Sufis are considered less concerned about the balancing between vertical and horizontal dimensions. The research explores the concepts and practices of hybrid Sufism undertaken by Kyais (religious leaders) and their followers in improving quality of life. Ethnography was used for exploring the mindset and activities of Kyai and his followers. This study involved four Kyais in Java and Kalimantan, (...) Indonesia. Research data were obtained through participant observations, in-depth interviews and documentation. The data were analysed by Spadley’s ethnographic steps as follows: (1) domain analysis, (2) taxonomy analysis, (3) componential analysis and (4) cultural-thematic analysis. The results showed that hybrid Sufism could improve quality of life. Hybrid Sufism can better appreciate and interpret local wisdom with an attitude of preserving nature and a positive understanding of worldly wealth, increasing the hard work ethos to achieve material–spiritual qualities. Contribution: This article shows that hybrid Sufism encourages the life of Sufis in harmony between vertical and horizontal aspects. This understanding and lifestyle give rise to respect for others, being friendly to the environment and interpreting life and local wisdom. (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)