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

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)

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)

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)

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)

The health of newborns has always been subject to the natural lottery. When in the past a severely disabled baby was born, nature provided the “solution,” and the child did not survive. Medical technology has brought about a change; fetuses who would have died during pregnancy or newborns who once would have had little chance to survive are now kept alive. Although these technological advances do benefit many children, the dark side is that more severely handicapped babies are surviving.When (...) a severely disabled baby is born, all persons concerned are faced with emotional difficulties as well as moral and legal dilemmas. Questions that arise include whether it is acceptable, morally and legally, to allow the severely handicapped newborn to die by forgoing treatment or by direct intervention. (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)

The perceived meaning of life significantly affects the quality of human life. It is of particular significance in borderline situations. One of such situations is the birth of an intellectually disabled child. The article presents the results of the study concerning the perceived meaning of life in the case of parents who bring up a child with limited intellectual abilities. The study included 87 mothers and 65 fathers bringing up an intellectually disabled child. In the (...) studied cases, parents perceived their life as highly meaningful. The results indicated that the perceived meaning of life in the case of parents of intellectually disabled children was related with: suffering experienced by the parents as a result of a limited intellectual ability of their daughter/son, the manner of performing their parental role and the sense of parental identity. (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)

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)

Several criticisms of the Groningen Protocol rest on misunderstandings about how it works or which babies it concerns. Some other objections—about quality‐of‐life judgments and parents' role in making decisions about their children—cannot be easily cleared away, but at least in the context of Dutch culture and medicine, the protocol is acceptable.

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)

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)

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)

Hinduism is considered one of the most ancient religions in the world. Although the technological innovation of modernization has undermined the reliance on their traditions, Hindus may still rely on Hindu Scripture when making decisions. From their standpoint, contrary to Western medicine, human lives cannot be reduced to statistical and empirical facts. They focus more on preserving the spirit, rather than considering survival as one of the goals of medicine. Consequently, when a preterm infant is born, Hindu parents might struggle (...) to understand the goals of Western neonatologists. This divergence may create misunderstandings when discussing end-of-life decisions. Since they value relational aspects to be of utmost importance, they may accept treatments only in the likelihood of good neurological outcomes. Being able to interact allows Hindus to act virtuously with the aim of purifying their soul toward moksa. When it comes to end-of-life decisions on behalf of newborns, Hindu parents may opt to forgo treatments and let the baby peacefully die, while praying for their soul to have a better rebirth. This paper aims to evaluate quality-of-life assessment in the Hindu tradition in comparison with the Catholic tradition. It draws parallelisms between these two different religions to investigate whether an inter-religious dialogue is possible. This work will help Catholic, and more broadly Western, doctors to have a better understanding of the Hindu end-of-life views. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or (...) when it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

IntroductionMother–child interactions during the first years of life have a significant impact on the emotional and cognitive development of the child. In this work, we study how a prenatal diagnosis of malformation may affect maternal representations and the quality of these early interactions. To this end, we conducted a longitudinal observational study of mother–child interactions from the gestational stage until the baby completed 12 months of age.Participants and MethodsWe recruited 250 pregnant women from a local university hospital. (...) Among them, 50 mother–infant dyads participated in all stages of the study. The study group consisted of 25 pregnant women with fetuses with some structural alteration and the control group consisted of 25 pregnant women with fetuses without structural anomalies. We collected obstetric and socio demographic data and pregnancy outcomes. Anxiety and depressive state data were collected using the COVI and Raskin Scales. We video-recorded the mother–infant interactions during several stages, including when the child was a newborn and when the child was 2, 4, 6, 9, and 12 months of age. The quality of the mother infant interactions were measured using the Coding Interactive Behavior. The interactive moments recorded on video was composed of three different activities, each one lasting appoximately 3 min, which included Free Interaction, where the mother was instructed to interact “as usual” without any toy, Toy Interaction, where the mother and baby played with a puppv, and Song Interaction, where the mother and baby interacted while the mother sang the “Happy Birthday” song.ResultsIn the gestational phase, there was a significant difference between the groups with respect to anxiety and depression scores, which were significantly higher for the study group. In the postnatal phase, we found significant differences between the groups with respect to CIB scales after the child completed 6 months of age: the study group presented significantly higher values of Maternal Sensitivity at 6 months of age, of Baby Involvement at 9 and 12 months of age, and of Dyadic Reciprocity at 6, 9, and 12 months of age, while the control group presented significantly higher values of Withdrawal of the Baby at 6 months of age, and of Dyadic Negative States at 6 and 9 months of age.ConclusionThe support offered by the study favored the mother–infant bond and had a positive effect on the quality of interaction during the first year of life, despite the presence of prenatal diagnosis. (shrink)

Patient advocacy has been claimed as a new role for professional nurses and many codes of ethics for nurses state that they act as patient advocates. Nursing education is faced with the challenge of preparing nurses for this role. In this article we describe the results of a study that considered the tendencies of a cohort of nursing students at the Kocaeli University School of Nursing to act as advocates and to respect patients’ rights, and how their capacities to (...) do so changed (or not) as a result of their nursing education. This longitudinal study used a questionnaire consisting of 10 statements relating to patient care. It was performed both at the start (1998) and at the end (2002) of the nursing training. At the beginning of their course 77 students participated; in the study. After four years, only 55 students participated, the reason for this drop in number being unknown. The questions asked nurses if patients should have: the right to receive health care; the right to participate in the decision-making process about their treatment; the right always to be told the truth; and the right to have access to their own medical records. They were also asked: if quality of life should be a criterion for discontinuing treatment; if patients have the right to die and the right to refuse treatment; if patients should be assisted to die or helped to undergo active euthanasia; and if severely disabled newborn babies should be allowed to die. The student nurses demonstrated considerable insight into contemporary nursing issues and were ready to act as patient advocates. Professional responsibility demands that good nurses advocate strongly for patients’ choices. (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)

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)

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)

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)

In the current study we compared academic locus of control (ALoC) and perceived quality of academic life (PQAL) across three groups of university students: those without disabilities, those with attention deficit disorder or learning disabilities (ADD-LD), and those with other disabilities. Results showed no significant differences in ALoC scores, with each group reporting an internal ALoC. However, students with other disabilities (e.g., sensory, motor, chronic health, and/or mental health) reported significantly (...) lower satisfaction with their overall quality of academic life than students without disabilities. Applied implications are discussed along with recommendations for further research. (shrink)

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)

ObjectiveThis study aimed to analyse how stereotypes towards older people moderate the relationship between burnout and quality of life of professionals working in nursing homes.MethodA total of 312 professionals were asked to complete questionnaires of burnout Maslach Burnout Inventory quality of Life and aging stereotypes. The moderation effects were tested using linear regression models.ResultsA negative association was observed between burnout and QoL. It was also found a statistically significant moderator effect of the total score of stereotypes (...) and the health stereotypes, besides a marginally statistically significant moderator effect for motivational stereotypes. The moderator effects were different for people with low and high negative stereotypes. QoL was more affected under conditions of high burnout, in which people with more negative stereotypes tended to present higher QoL than people with lower negative stereotypes.ConclusionHighly burned-out professionals in nursing homes may avoid their negative feelings projecting them to residents through stereotypes, as a way of coping with burnout and increasing their QoL. However, this mechanism is an “aggressive reaction” and may have negative effects for both the older adult and the professional. The comprehension of these variables is essential for developing adequate intervention programs. (shrink)

The so-called Disability Paradox arises from the apparent tension between the popular view that disability leads to low well-being and the relatively high life-satisfaction reports of disabled people. Our aim in this essay is to make some progress toward dissolving this alleged paradox by exploring the relationship between disability and various “goods of life”—that is, components of a life that typically make a person’s life go better for her. We focus on four widely recognized goods of (...) life (happiness, rewarding relationships, knowledge, achievement) and four common types of disability (sensory, mobility, intellectual, and social) and systematically examine the extent to which the four disability types are in principle compatible with obtaining the four goods of life. Our findings suggest that that there is a high degree of compatibility. This undermines the widespread view that disabilities, by their very nature, substantially limit a person’s ability to access the goods of life, and it provides some guidance on how to dissolve the Disability Paradox. (shrink)

The present study sought to clarify the impact of executive and social functioning on challenging behavior and the downstream influence of challenging behavior on quality of life and functioning in a large transdiagnostic sample. Understanding these relationships is crucial for developing and designing tailored intervention strategies. In a cross-sectional study, parent informants of 2,004 children completed measures of executive and social functioning, challenging behavior, child and family quality of life, and reported on functional impacts of challenging (...) behavior. Using structural (path) modeling, analyses evaluated the associations between executive and social functioning, including emotion regulation and risk avoidance, with overall and specific types of challenging behavior. Structural models also examined the influence of challenging behavior on child and family quality of life, including measures of the immediate and extended environment, and functional impacts on the parent/child as well as interactions with the medical/legal systems. Finally, mediational models explored the direct and indirect effects of executive and social functioning on quality of life and impact measures via challenging behavior. Results indicated that executive functioning accounts for substantial variance (R2 = 0.47) in challenging behavior. In turn, challenging behavior accounts for substantial variance in child and family quality of life (R2 = 0.36) and parent/child impacts (R2 = 0.31). Exploratory mediational models identified direct effects from executive and social functioning measures on quality of life and functional impacts and indirect effects for executive functioning via challenging behavior. These findings support the development of new intervention strategies and suggest the need to measure executive functioning when assessing and tailoring the treatment of challenging behavior in clinical practice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Please Help Me”Rebecca L. VolpeTwo–year–old Jay was born prematurely at 26 weeks gestation, addicted to opiates. After several months in the Neonatal ICU, he was sent home, ventilator–dependent but with a high likelihood of survival and a low chance of severe, lasting disability. When Jay was 1½, he had a cardiopulmonary arrest at home. The parents of children who are on ventilators at home receive extensive education and (...) training about how to respond to something like an arrest. They are taught that a quick response is often critical to their child’s long–term prognosis. And yet, Jay’s parents took such a long time to respond to his code that Jay now has severe hypoxic ischemic encephalopathy: his brain was deprived of oxygen for so long that he has no higher cortical function, and will never think, speak, walk, or play.Currently, Jay is ventilator–dependent and has a very poor prognosis. Jay goes back and forth between a nursing home and the hospital. During one of his many hospitalizations, the ICU team decided to call an ethics consultation, because they felt that continued aggressive intervention was no longer in Jay’s best interests. I was the person on the other end of the line when the medical team called. After having a brief conversation with the attending physician, I left my office and walked to the Pediatric ICU to visit Jay. I arrived at the bedside—really just a large crib—and saw a baby with dark hair lying flat on his back. His tongue was swollen and protruding from his mouth, his eyes were puffy and closed, and his limbs were limp. On his belly was a piece of paper with the words, “BECKY PLEASE HELP ME” typed in huge, bold font. I looked up, into the eyes of the attending physician and said, “Did you type that?” The physician nodded yes. Much could be said about this physician’s behavior. But the bottom line—from a clinical perspective, at least—is that this ICU team was desperate, and that they had significant expectations that I would be able to help them.I began the work of the consultation. I reviewed the medical record, spoke with members of the treating team, and set up a time to talk to the family. During the family meeting, I learned that Jay’s parents wanted to continue to treat aggressively, and that they believed it was not their place to decide when it was their son’s time to die. That was [End Page 122] God’s decision. They could not fathom removing interventions that were maintaining their son’s life. They acknowledged that his quality of life was not high, but, still, it was life.The preferences of the treating team were in stark contrast to the parents’ preferences. The neurologists believed Jay did not have the capacity to experience physical pain, but the ICU team believed that continuing to treat Jay was cruel. Although the ICU team acknowledged that Jay was probably not suffering, they noted that we could not know for sure, and that sometimes Jay grimaced and withdrew—signs that are often interpreted as suffering. The ICU team also argued that given all the sick children in the world, and the scarcity of healthcare resources, it didn’t make sense to invest hundreds of thousands of dollars into prolonging Jay’s life. Additionally, they discovered that Jay had osteopenia (weak, brittle bones)—which was causing multiple bone fractures. The ICU team anguished over the thought of Jay’s small, soft bones continuing to break despite their best efforts.The bioethicist in me knows that, as long as the patient isn’t suffering and the parents aren’t demanding futile interventions (they weren’t), our role as providers was not to judge the parents’ value system. I told the ICU team over and over that different people place different value on Jay’s type of life, and that it wasn’t for us to tell them that their value structure was wrong. I talked with other members of the clinical ethics consultation service. Then I brought the case to the entire institutional... (shrink)

Background: Mental healthcare needs person-tailored interventions. Experience Sampling Method (ESM) can provide daily life monitoring of personal experiences. This study aims to operationalize and test a measure of momentary reward-related Quality of Life (rQoL). Intuitively, quality of life improves by spending more time on rewarding experiences. ESM clinical interventions can use this information to coach patients to find a realistic, optimal balance of positive experiences (maximize reward) in daily life. rQoL combines the frequency of (...) engaging in a relevant context (a ‘behavior setting’) with concurrent (positive) affect. High rQoL occurs when the most frequent behavior settings are combined with positive affect or infrequent behavior settings co-occur with low positive affect. Methods: Resampling procedures (Monte Carlo experiments) were applied to assess the reliability of rQoL using various behavior setting definitions under different sampling circumstances, for real or virtual subjects with low-, average- and high contextual variability. Furthermore, resampling was used to assess whether rQoL is a distinct concept from positive affect. Virtual ESM beep datasets were extracted from 1058 valid ESM observations for virtual and real subjects. Results: Behavior settings defined by Who-What contextual information were most informative. Simulations of at least 100 ESM observations are needed for reliable assessment. Virtual ESM beep datasets of a real subject can be defined by Who-What-Where behavior setting combinations. Large sample sizes are necessary for reliable rQoL assessments, except for subjects with low contextual variability. rQoL is distinct from positive affect. Conclusion: rQoL is a feasible concept. Monte Carlo experiments should be used to assess the reliable implementation of an ESM statistic. Future research in ESM should asses the behavior of summary statistics under different sampling situations. This exploration is especially relevant in clinical implementation, where often only small datasets are available. (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)

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)

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)

Few subjects have generated so many newspaper headlines and such heated controversy as the treatment, or non-treatment, of handicapped newborns. In 1982, the case of Baby Doe, a child born with Down's syndrome, stirred up a national debate in the United States, while in Britain a year earlier, Dr. Leonard Arthur stood trial for his decision to allow a baby with Down's syndrome to die. Government intervention and these recent legal battles accentuate the need for a (...) reassessment of the complex issues involved. This volume--by two authorities on medical ethics--presents a philosophical analysis of the subject based on particular case studies. Addressing the doctrine of the absolute sanctity of life, Singer and Kuhse examine some actual cases where decisions have been reached; consider the criteria for making these decisions; investigate the differences between killing and letting die; compare Western attitudes and practices with those of other cultures; and conclude by proposing a decision-making framework that offers a rational alternative to the polemics and confusion generated by this highly controversial topic. (shrink)

Monetary Intelligence theory asserts that individuals apply their money attitude to frame critical concerns in the context and strategically select certain options to achieve financial goals and ultimate happiness. This study explores the bright side of Monetary Intelligence and behavioral economics, frames money attitude in the context of pay and life satisfaction, and controls money at the macro-level and micro-level. We theorize: Managers with low love of money motive but high stewardship behavior will have high subjective well-being: pay (...) satisfaction and quality of life. Data collected from 6586 managers in 32 cultures across six continents support our theory. Interestingly, GDP per capita is related to life satisfaction, but not to pay satisfaction. Individual income is related to both life and pay satisfaction. Neither GDP nor income is related to Happiness. Our theoretical model across three GDP groups offers new discoveries: In high GDP entities, “high income” not only reduces aspirations—“Rich, Motivator, and Power,” but also promotes stewardship behavior—“Budget, Give/Donate, and Contribute” and appreciation of “Achievement.” After controlling income, we demonstrate the bright side of Monetary Intelligence: Low love of money motive but high stewardship behavior define Monetary Intelligence. “Good apples enjoy good quality of life in good barrels.” This notion adds another explanation to managers’ low magnitude of dishonesty in entities with high Corruption Perceptions Index. In low GDP entities, high income is related to poor Budgeting skills and escalated Happiness. These managers experience equal satisfaction with pay and life. We add a new vocabulary to the conversation of monetary intelligence, income, GDP, happiness, subjective well-being, good and bad apples and barrels, corruption, and behavioral ethics. (shrink)

Defining quality of life is a difficult task as it is a subjective and personal experience. However, for the elderly, this definition is necessary for making complicated healthcare-related decisions. Commonly these decisions compare independence against safety or longevity against comfort. These choices are often not made in isolation, but with the help of a healthcare team. When the patient’s concept of quality of life is miscommunicated, there is a risk of harm to the patient whose (...) best interests are not well understood. In order to bridge this gap in understanding and unite seniors with their caretakers as a cohesive team, we need to establish a definition of quality of life. In this paper, my personal experiences with the elderly will be analysed along with five essays on the topic of ageing. These sources provide clear evidence that quality of life for seniors is majorly determined by the ability to preserve one’s lifelong identity. When making difficult decisions in geriatric healthcare, this greater understanding of the determinants of life quality will allow treatments to best serve the elderly. Defining quality of life allows healthcare providers to shift the focus from minimising disability toward maximising ability. I believe this shift would provide seniors with better health outcomes and properly enhance the quality of their years. (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)

Both mainstream and disability bioethics sometimes contend that the self-assessment of disabled people about their own well-being is distorted by adaptive preferences that are only held because other, better options are unavailable. I will argue that both of the most common ways of understanding adaptive preferences—the autonomy-based account and the well-being account—would reject blanket claims that disabled people’s QOL self-assessment has been distorted, whether those claims come from mainstream bioethicists or from disability bioethicists. However, rejecting these generalizations for a more (...) nuanced view still has dramatic implications for the status quo in both health policy and clinical ethics. (shrink)

How does a social enterprise pursue its ethical mandate of social impact growth while navigating the perils of the most vulnerable stage in a venture’s life—scaling up? We observe a small inclusivity social enterprise attempting to scale up rapidly to create equality for people with disabilities throughout the world. Our embedded, ethnographic study is terminated with the venture’s unfortunate demise after their dramatic effort to scale up failed. By examining scaling decision-making and conflicts around creation reasoning (...) longitudinally, our study identifies over-use of effectual logic—a creation reasoning type considered more ethical and more appropriate for high-innovativeness contexts than causal logic—as a major factor in the venture’s failure. From this insight, we extend the parameters of effectuation theory to scaling up and dimensionalize its ethical implications. Guidance for social entrepreneurs to scale up successfully while maintaining ethical integrity is also provided. (shrink)

The occurrence of the novel severe acute respiratory syndrome coronavirus-2 at the end of 2019 comes along with many challenges. Besides worry for one’s own health and the well-being of the family, all measures applied to limit the spread of the coronavirus affected daily life. School closures, economic shutdown and contact restrictions have led to high levels of stress. The impact on health and families has been widely discussed. However, population-based data are scarce. Here, we have assessed health, (...) quality of life and intrafamilial relations depending on the COVID-19 pandemic. Using a three-step random-route approach, a population-based sample of 2,515 persons was recruited during the second COVID-19 wave in Germany in winter 2020/21. While the majority of participants reported no change in their health status and the relationship with their partner and children, more than half of participants reported a decreased quality of life since the beginning of the pandemic. Female gender, age above 60 years, a low household income, not living with a partner and the experience of childhood adversity were associated with a higher risk for a worsening of health, quality of life and intrafamilial relations. These had already been well-established risk factors ahead of the pandemic. In order to avoid further increase of inequality in our society and more devastating impact of the pandemic on health and intrafamilial relations, low-level support and intervention programs are urgently needed. (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)

This study aimed to investigate the relationship between digital literacy and the quality of life of the elderly in Arak. The research is a descriptive survey in terms of applied purpose and terms of method and nature. The statistical population of the present study included all the elderly in Arak who were at least 64 years and older; 376 participants were selected using the sampling method. Participants were assessed with the help of digital literacy and quality-of- (...) class='Hi'>life questionnaires. To analyze the data, descriptive statistics (mean, standard deviation) and inferential statistics (analysis of covariance) were used using the SPSS-21 software. The results showed that all parameters of digital literacy had a direct and significant effect on the quality of life of the elderly. Among the quality-of-life parameters, the impact of the physical environment health was less than that of the others. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Disability Embodied: Narrative Exploration of the Lives of Two Brothers Living with Traumatic Brain InjuryDouglas E. KiddAny discussion of personal experiences with disability, inevitably lead me to recall the experiences of my brother, Richard Kidd. An examination of our journeys clearly illustrates the term disability. More so, our stories reveal the outcome of severe physical impairment dictates the limits of personal agency and autonomy. Perhaps an obvious (...) conclusion, but exploration of our experience is useful as we provide living testimony to eventualities that could similarly occur to others. In order to provide context for discussion of our disabilities, I will briefly recall how we acquired our traumatic brain injuries (TBI), as well as how our brain injuries are expressed. The article will demonstrate that due to the severity of the brain damage he acquired, Richard is entirely subject to the whim of the society he encounters, and thus disabled. The article will also discuss how the disabling attitudes I have encountered sought to diminish my humanity.Richard KiddRichard’s descent into impairment began in the early evening hours of December 31, 1987. As a pedestrian, Richard attempted to cross a street in Indianapolis, when a car without using headlights, slammed into him. In addition, the driver fled the scene of the accident. After stabilizing from the initial trauma—multiple compound fractures to both legs and severe brain injury—Richard spent approximately ten months in coma. After emerging from coma, Richard underwent months of therapy. Albeit with consistent direction from others, therapy enhanced Richard’s ability to hold a cup and use a spoon. These were significant victories for Richard and signaled the beginning of his recovery. However, within two years of his accident, monies ended for rehabilitation and Richard entered into custodial care at his first nursing facility. As time passed, his daily interactions with poorly supervised, unskilled, and underpaid nursing facility employees with little time to work with Richard meant it was more cost efficient for staff to simply spoon–feed Richard. Consequently, Richard lost the ability to participate in an aspect of his self–care. Richard’s humanity took years to gradually erode, but due to the severity of his impairments, he became viewed by those he encountered as an object of treatment, or reservoir of pain and pity, rather than an individual worthy of respect. Accordingly, [End Page 199] Richard became viewed as other. Thus began Richard’s descent into disability.A complete lack of dental care for decades provides a good example of Richard’s treatment as other. Richard’s experience also demonstrates that desensitized members of the medical, dental, and long–term care professions sometimes precipitate grave circumstances. The combination of an inattention to his needs and his limited ability to participate with his self–care meant that Richard typically went without dental treatment. His quality of life diminished further when aides at a nursing facility dropped him. During the fall, Richard’s face smashed into the floor and several teeth were shattered. More than a decade passed before Richard finally received follow–up dental treatment—that day nearly cost him his life. Due to prolonged neglect, all of Richard’s teeth required extraction. I do not question the dental surgeon’s assessment of Richard’s teeth. I am certain that all of his teeth needed to be removed; but Richard’s sedentary lifestyle meant that he had limited ability to cope with the trauma associated with having 24 teeth removed in one session. I feel certain the dental surgeon assumed Richard was like most other patients and could handle the stress associated with the procedures. However, Richard could not cope with trauma and blood loss the extractions produced. What is worse than the dental surgeon’s assessment of Richard’s ability to withstand surgery is the post–op personnel decision to discharge him to home, shortly after surgery. The nursing facility was ill–equipped to cope with the extent of the blood loss that ensued and soon Richard began to aspirate on his own blood. Accordingly, Richard was sent to the hospital where he proceeded to slip into coma. Richard remained in a coma for approximately four days and in hospital... (shrink)

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on (...) the QALY scale, below that of someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it. (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)

The increasing number of newborns has stimulated the infant market. In particular, the baby stroller, serving as an important life partner for both babies and parents, has attracted more attention from society. Stroller design and functionality are of vital importance to babies' physiological and psychological health as well as brain development. Therefore, in this paper, we propose a modularization design method for the novel four-wheeled baby stroller based on the KANO model to ensure the mechanical safety and (...) involve more functionalities. Manual control of the baby stroller requires the rapid response of human motor systems in a completely controlled manner, which could be a potential risk. To enhance the safety and stability of the stroller motion, especially in situations where manual control is hard to achieve (e.g., sharp turns), we propose an autonomous motion control scheme based on model predictive control. Both the modularization design and the motion controller are verified in the MATLAB simulation environment through path tracking tasks. The feasibility is validated by the satisfactory experimental results with lateral position error in a reasonable range and good trajectory smoothness. (shrink)

The common belief is that disability is bad for the person who is disabled, that it has a negative effect on well-being. Some disability rights activists and philosophers, however, assert that disability has little or no impact on how well a person’s life goes, that it is neutral with respect to flourishing. In recent articles Stephen Campbell and Joseph Stramondo, while rejecting both views, claim that we cannot make any broad generalizations about the effect of disability on well-being. (...) Whether they are right about physical and sensory disabilities, I do not know, but I argue that they are wrong about intellectual disabilities. A broad generalization about intellectual disabilities is justified: it always has a negative impact on quality of life, even though there is no single negative impact. The disadvantages of ID are plain but complicated. (shrink)