BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED or (...) were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

The fourth edition of this bestselling title is designed to help you think critically and thoughtfully about ethical decisions you'll face in practice-in any health care discipline. Utilizing a unique 6-step decision making process designed by the author, this multi-disciplinary text provides an expert framework for making effective choices that lead to a professional and caring response to patients and clients.

The purpose of this paper is to encourage reflection about the harm that could result if the positive aspects of team-organized health care are compromised during the health care reform process. While other models of health care delivery could replace teamwork and serve patients as well or better, the interdisciplinary health care team probably will not be abandoned. However, one or more disciplines whose members play important roles on various teams may be sacrificed in the hasty effort to define essential (...) health care. Moreover, a significant proportion of the types of IHCTs in existence could be rashly eliminated from health plans. These changes should not take place randomly or by default. (shrink)

The purpose of this paper is to encourage reflection about the harm that could result if the positive aspects of team-organized health care are compromised during the health care reform process. While other models of health care delivery could replace teamwork and serve patients as well or better, the interdisciplinary health care team probably will not be abandoned. However, one or more disciplines whose members play important roles on various teams may be sacrificed in the hasty effort to define essential (...) health care. Moreover, a significant proportion of the types of IHCTs in existence could be rashly eliminated from health plans. These changes should not take place randomly or by default. (shrink)

Pain management has no meaning without the stories of men and women, and boys and girls whose lives are dramatically altered by the presence of pain in their own and their loved ones lives. In this narrative section, four people present their perspectives on the enigma and challenge of pain, its power, and our on-going efforts to limit its hold on our lives.In the first story, Dr. Robert McQuillan, an anesthesiologist with Creighton University School of Medicine, conveys the fear some (...) patients suffering chronic pain face when seeking pain medication over the long term. Dr. Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center and immediate past president of the American College of Physicians, recounts the plight of a fellow physician whose pain treatment of a patient led to suspension of his professional license and to personal bitterness after many years of exemplary medical practice. (shrink)

Pain management has no meaning without the stories of men and women, and boys and girls whose lives are dramatically altered by the presence of pain in their own and their loved ones lives. In this narrative section, four people present their perspectives on the enigma and challenge of pain, its power, and our on-going efforts to limit its hold on our lives.In the first story, Dr. Robert McQuillan, an anesthesiologist with Creighton University School of Medicine, conveys the fear some (...) patients suffering chronic pain face when seeking pain medication over the long term. Dr. Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center and immediate past president of the American College of Physicians, recounts the plight of a fellow physician whose pain treatment of a patient led to suspension of his professional license and to personal bitterness after many years of exemplary medical practice. (shrink)

If it can be agreed that health care resources are finite, it follows that choices between competing needs must be made. Cost utility analysis is an application of decision theory which has been proposed as a strategy for making difficult social decisions about health resource allocations. This method is heavily dependent upon the measurement of social utilities for various health outcomes. Recent work in cognitive psychology suggests that there are important sources of distortion in such measurement. Ethical implications of application (...) of cost utility analysis to health resource allocations are discussed. (shrink)

If stem cell-based therapies are developed, we will likely confront a difficult problem of justice: for biological reasons alone, the new therapies might benefit only a limited range of patients. In fact, they might benefit primarily white Americans, thereby exacerbating long-standing differences in health and health care.

ABSTRACT:Despite a significant increase in whistle-blowing practices in work organizations, we know little about what differentiates whistle-blowers from those who observe a wrongdoing but chose not to report it. In this review article, we first highlight the arenas in which research on whistle-blowing has produced inconsistent results and those in which the findings have been consistent. Second, we propose that the adoption of an identity approach will help clarify the inconsistent findings and extend prior work on individual-level motives behind whistle-blowing. (...) Third, we argue that the integration of the whistle-blowing research with that on ethics programs will aid in systematically expanding our understanding of the situational antecedents of whistle-blowing. We conclude our review by discussing new theoretical and methodological arenas of research in the domain of whistle-blowing. (shrink)

A new study published in Journal of Medical Ethics by van der Zande et al 1 further highlights why classifying pregnant women as a ‘vulnerable population’ in the context of research is deeply problematic. Because the designation of ‘vulnerable’ is otherwise applied to populations whose decision-making capacity about research participation is somehow compromised—such as children and adults of limited cognitive ability—many of us have been arguing for some time that using this designation for pregnant women is inappropriate and disrespectful.2–4 There (...) is nothing about the state of pregnancy that renders pregnant women incapable of offering valid research consents or refusals. Moreover, rather than protecting the health interests of pregnant women and their offspring, this designation has had the opposite effect. It has contributed to the widespread exclusion of pregnant women from research activities, which is itself pernicious to the health of pregnant women.5 We know that pregnant women encounter a range of health needs across their pregnancies. In the USA, for example, approximately 9 out of every 10 women use some kind of medication during pregnancy to manage health conditions.6 Yet because pregnant women have largely been …. (shrink)

The earlier volume in this series dealt with two religions of Indian origin, namely, Buddhism and Jainism. The Indian religious scene, however, is characterized by not only religions which originated in India but also by religions which entered India from outside India and made their home here. Thus religious life in India has been enlivened throughout its history by the presence of religions of foreign origin on its soil almost from the very time they came into existence. This volume covers (...) three such religions—Zoraoastrianism, Judaism, and Islam. In the case of Zoraostianism, even its very beginnings are intertwined with India, as Zoroastrianism reformed a preexisting religion which had strong links to the Vedic heritage of India. This relationship took on a new dimension when a Zoroastrian community, fearing persecution in Persia after its Arab conquest, sought shelter in western India and ultimately went on to produce India’s pioneering nationalist in the figure of Dadabhai Naoroji ( 1825-1917), also known as the Grand Old Man of India. Jews found refuge in south India after the destruction of the Temple by the Romans in 70 C.E. and have remained a part of the Indian religious scene since then, some even returning to Israel after it was founded in 1948. Islam arrived in Kerala as soon as it was founded and one of the earliest mosques in the history of Islam is found in India. Islam differs from the previously mentioned religions inasmuch as it went on to gain political hegemony over parts of the country for considerable periods of time, which meant that its impact on the religious life of the subcontinent has been greater compared to the other religions. It has also meant that Islam has existed in a religiously plural environment in India for a longer period than elsewhere in the world so that not only has Islam left a mark on India, India has also left its mark on it. Indeed all the three religions covered in this volume share this dual feature, that they have profoundly influenced Indian religious life and have also in turn been profoundly influenced by their presence in India. (shrink)

The earlier volume in this series dealt with two religions of Indian origin, namely, Buddhism and Jainism. The Indian religious scene, however, is characterized by not only religions which originated in India but also by religions which entered India from outside India and made their home here. Thus religious life in India has been enlivened throughout its history by the presence of religions of foreign origin on its soil almost from the very time they came into existence. This volume covers (...) three such religions—Zoraoastrianism, Judaism, and Islam. In the case of Zoraostianism, even its very beginnings are intertwined with India, as Zoroastrianism reformed a preexisting religion which had strong links to the Vedic heritage of India. This relationship took on a new dimension when a Zoroastrian community, fearing persecution in Persia after its Arab conquest, sought shelter in western India and ultimately went on to produce India’s pioneering nationalist in the figure of Dadabhai Naoroji ( 1825-1917), also known as the Grand Old Man of India. Jews found refuge in south India after the destruction of the Temple by the Romans in 70 C.E. and have remained a part of the Indian religious scene since then, some even returning to Israel after it was founded in 1948. Islam arrived in Kerala as soon as it was founded and one of the earliest mosques in the history of Islam is found in India. Islam differs from the previously mentioned religions inasmuch as it went on to gain political hegemony over parts of the country for considerable periods of time, which meant that its impact on the religious life of the subcontinent has been greater compared to the other religions. It has also meant that Islam has existed in a religiously plural environment in India for a longer period than elsewhere in the world so that not only has Islam left a mark on India, India has also left its mark on it. Indeed all the three religions covered in this volume share this dual feature, that they have profoundly influenced Indian religious life and have also in turn been profoundly influenced by their presence in India. (shrink)

Researchers from diverse disciplines, including organismal and cellular physiology, sports science, human nutrition, evolution and ecology, have sought to understand the causes and consequences of the surprising variation in metabolic rate found among and within individual animals of the same species. Research in this area has been hampered by differences in approach, terminology and methodology, and the context in which measurements are made. Recent advances provide important opportunities to identify and address the key questions in the field. By bringing together (...) researchers from different areas of biology and biomedicine, we describe and evaluate these developments and the insights they could yield, highlighting the need for more standardisation across disciplines. We conclude with a list of important questions that can now be addressed by developing a common conceptual and methodological toolkit for studies on metabolic variation in animals. (shrink)

In Portraits of American Philosophy, eight of America's most prominent philosophers offer autobiographical narratives that remind us that the life of a scholar is both a tale of personal struggle and an adventure in ideas.

Is the societal-level of analysis sufficient today to understand the values of those in the global workforce? Or are individual-level analyses more appropriate for assessing the influence of values on ethical behaviors across country workforces? Using multi-level analyses for a 48-society sample, we test the utility of both the societal-level and individual-level dimensions of collectivism and individualism values for predicting ethical behaviors of business professionals. Our values-based behavioral analysis indicates that values at the individual-level make a more significant contribution to (...) explaining variance in ethical behaviors than do values at the societal-level. Implicitly, our findings question the soundness of using societal-level values measures. Implications for international business research are discussed. (shrink)

This article provides current Schwartz Values Survey (SVS) data from samples of business managers and professionals across 50 societies that are culturally and socioeconomically diverse. We report the society scores for SVS values dimensions for both individual- and societal-level analyses. At the individual-level, we report on the ten circumplex values sub-dimensions and two sets of values dimensions (collectivism and individualism; openness to change, conservation, self-enhancement, and self-transcendence). At the societal-level, we report on the values dimensions of embeddedness, hierarchy, mastery, affective (...) autonomy, intellectual autonomy, egalitarianism, and harmony. For each society, we report the Cronbach’s α statistics for each values dimension scale to assess their internal consistency (reliability) as well as report interrater agreement (IRA) analyses to assess the acceptability of using aggregated individual level values scores to represent country values. We also examined whether societal development level is related to systematic variation in the measurement and importance of values. Thus, the contributions of our evaluation of the SVS values dimensions are two-fold. First, we identify the SVS dimensions that have cross-culturally internally reliable structures and within-society agreement for business professionals. Second, we report the society cultural values scores developed from the twenty-first century data that can be used as macro-level predictors in multilevel and single-level international business research. (shrink)

Three studies were conducted to explore the psychological determinants of COVID-deterrent behaviors. In Study 1, using data collected and analyzed both before and after the release of COVID-19 vaccines, mask-wearing, other preventative behaviors like social distancing, and vaccination intentions were positively related to assessments of the Coronavirus Behavioral Health Mindset ; belief in the credibility of science; progressive political orientation; less use of repressive and more use of sensitization coping; and the attribution of COVID-19 safety to effort rather than ability, (...) powerful forces, fate, or luck. In Study 2, favorable COVID-19 vaccination intentions were related to greater willingness to work, lower emotional distress, and greater customer experience mindset. Study 3 examined the personality and motives of individuals who volunteered to help deliver COVID-19 inoculations to the local community. The vaccine-giving volunteers, especially those with prosocial motives, had high CVBHM scores, belief in the credibility of science, low use of repressive coping, greater attribution of COVID-19 protection to effort, low likelihood of voting conservative, were older, and had more education than others. The majority of public health volunteers expressed prosocial motives to help people or join a cause, but many expressed the personal motives of getting the COVID-19 vaccination for themselves, conveying a public image of compassion, or structuring time. Based on the three research studies, a COVID-19 Mindset Hierarchy model is proposed to integrate the results. (shrink)

ICAP is a theory of active learning that differentiates students’ engagement based on their behaviors. ICAP postulates that Interactive engagement, demonstrated by co‐generative collaborative behaviors, is superior for learning to Constructive engagement, indicated by generative behaviors. Both kinds of engagement exceed the benefits of Active or Passive engagement, marked by manipulative and attentive behaviors, respectively. This paper discusses a 5‐year project that attempted to translate ICAP into a theory of instruction using five successive measures: (a) teachers’ understanding of ICAP after (...) completing an online module, (b) their success at designing lesson plans using different ICAP modes, (c) fidelity of teachers’ classroom implementation, (d) modes of students’ enacted behaviors, and (e) students’ learning outcomes. Although teachers had minimal success in designing Constructive and Interactive activities, students nevertheless learned significantly more in the context of Constructive than Active activities. We discuss reasons for teachers’ overall difficulty in designing and eliciting Interactive engagement. (shrink)

Taking Parenting Public makes a compelling case that parenting has become dangerously undervalued in America today. It calls for a new investment—both personal and public—into the work of raising children and argues that we are all "stockholders" in the next generation. With a foreword by Sylvia Ann Hewlett and Cornel West, Taking Parenting Public crosses boundaries to bring together thinkers from diverse fields spanning the political spectrum. It features contributions from distinguished experts in economics, political science, public policy, child development, (...) public health, history, and the media. While recent books have focused on working mothers or absent fathers, Taking Parenting Public is the first volume to take a comprehensive look at the common struggles of parents. These essays go beyond the usual chest-beating about busy parents torn between work and family demands to suggest bold solutions. Instead of the typical call for "parent replacement"—more child care, more after school programs and more mentors—the contributors offer fresh strategies for "parent replenishment," ways to put mothers and fathers back into the lives of their children not only as economic providers, but also as emotional and moral providers. (shrink)

Routine action sequences critically rely on neural mechanisms maintaining contextual and temporal information to disambiguate similar tasks (e.g. making coffee or tea). In this study we show the involvement of areas in temporal and lateral prefrontal cortices in maintaining temporal and contextual information for the execution of hierarchically‐organized action sequences.

This article provides current Schwartz Values Survey data from samples of business managers and professionals across 50 societies that are culturally and socioeconomically diverse. We report the society scores for SVS values dimensions for both individual- and societallevel analyses. At the individual- level, we report on the ten circumplex values sub- dimensions and two sets of values dimensions. At the societal- level, we report on the values dimensions of embeddedness, hierarchy, mastery, affective autonomy, intellectual autonomy, egalitarianism, and harmony. For each (...) society, we report the Cronbach' s? statistics for each values dimension scale to assess their internal consistency as well as report interrater agreement analyses to assess the acceptability of using aggregated individual level values scores to represent country span sp. (shrink)

ObjectivesMany older adults with visual impairment also have significant hearing loss. The aim was to investigate the effectiveness of a newly developed Dual Sensory Loss protocol on communication and wellbeing of older persons with DSL and their communication partners in the Netherlands and Belgium.MethodsParticipants and their communication partners were randomized in the “DSL-protocol” intervention group or a waiting-list control group. The intervention took 3 to 5 weeks. Occupational therapists focused on optimal use of hearing aids, home-environment modifications and effective communication (...) strategies. The primary outcome was the Communication Strategies domain of the Communication Profile for the Hearing Impaired. Secondary outcomes measured in participants were the Low Vision Quality Of Life Adjustment subscale, the Center for Epidemiological Studies - Depression Scale, De Jong Gierveld Loneliness Scale and the Fatigue Assessment Scale. The Hearing Handicap and Disability Inventory - Reaction of Others subscale and the Care-related Quality of Life - 7 Dimensions was measured in communication partners. Measurements were taken at baseline and 3-month follow-up. Linear mixed models were used to analyze effects between groups over time for every outcome measure.ResultsIntention-to-treat analyses showed a significant effect of the DSL-protocol on the use of verbal strategies in favor of the control group, however, this effect was non-significant after adjustment for confounding. Effect sizes of other outcomes varied between −0.23 [−0.57, 0.12] and 0.30 [−0.05, 0.64]. The LMM showed a significant effect on the HHDI-Reaction of others scale in favor of communication partners in the treatment group, however, the effect did not remain significant at a 0.01 significance level and the effect size was very small and non-significant 0.12, 95% CI [−0.27 to 0.51]. Adjusted analyses did not reveal treatment effects.ConclusionThe DSL-protocol did not clearly contribute to the enhancement of communication and wellbeing in DSL-patients. Possible reasons for the lack of effects are OTs not being comfortable giving advice on communication and psychosocial issues or the short-term treatment and follow-up period. Further study is warranted to find out how the protocol may be adapted or whether it is necessary to involve mental healthcare professionals.Clinical Trial Registrationwww.ClinicalTrials.gov, identifier NTR2843. (shrink)