Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions of people with (...) physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates that (...) bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust. (shrink)

Well-designed pragmatic clinical trials (PCTs) are critical for improving healthcare delivery and patient outcomes (Haff and Choudhry 2018), and the article written by Garland et al. (2023) advance...

Many critics of the legalization of physician‐assisted death oppose it in part because they fear it will further disadvantage those who are already economically disadvantaged. This argument points to a serious problem of how economic considerations can influence medical decisions, but in the context of PAD, the concern is not borne out. We will provide empirical evidence suggesting that concerns about money influence medical decisions throughout the full course of illness, but at the end of life, financial pressure is much (...) more likely to influence a decision to pursue or reject aggressive life‐extending care than it is to influence a request for PAD. We will also address the question of whether financial pressure as a result of being poor—particularly in the context of an inadequate social safety net—robs people of their autonomy, rendering their informed request and consent invalid. We argue that it does not. We will emphasize the impracticality and injustice of rejecting the role of poverty as a legitimate factor in decision‐making, the irrational distinction between PAD and withdrawal of life‐sustaining care, and the more appropriate focus on the great flaws in the American health care system. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this essay, we (...) discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations (...) by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants’ perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a “helpful” or “very helpful” tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors’ knowledge this is the first investigatation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments. (shrink)

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving (...) the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work. (shrink)

Lukas J. Meier et al. offer the promise of a pathway for resolving clinical bioethical problems using an artificial intelligence interface. The ultimate goal, we assume, is...

Volume 20, Issue 3, March 2020, Page 21-24.

Background: Legislation on physician-assisted suicide is being considered in a number of states since the passage of the Oregon Death With Dignity Act in 1994. Opinion assessment surveys have historically assessed particular subsets of physicians.Objective: To determine variables predictive of physicians’ opinions on PAS in a rural state, Vermont, USA.Design: Cross-sectional mailing survey.Participants: 1052 physicians licensed by the state of Vermont.Results: Of the respondents, 38.2% believed PAS should be legalised, 16.0% believed it should be prohibited and 26.0% believed it should (...) not be legislated. 15.7% were undecided. Males were more likely than females to favour legalisation . Physicians who did not care for patients through the end of life were significantly more likely to favour legalisation of PAS than physicians who do care for patients with terminal illness . 30% of the respondents had experienced a request for assistance with suicide.Conclusions: Vermont physicians’ opinions on the legalisation of PAS is sharply polarised. Patient autonomy was a factor strongly associated with opinions in favour of legalisation, whereas the sanctity of the doctor–patient relationship was strongly associated with opinions in favour of not legislating PAS. Those in favour of making PAS illegal overwhelmingly cited moral and ethical beliefs as factors in their opinion. Although opinions on legalisation appear to be based on firmly held beliefs, approximately half of Vermont physicians who responded to the survey agree that there is a need for more education in palliative care and pain management. (shrink)

Physical activity, and likely the motivation for it, varies throughout the day. The aim of this investigation was to create a short assessment (CRAVE: Cravings for Rest and Volitional Energy Expenditure) to measure motivation states (wants, desires, urges) for physical activity and sedentary behaviors. Five studies were conducted to develop and evaluate the construct validity and reliability of the scale, with 1,035 participants completing the scale a total of 1,697 times. In Study 1, 402 university students completed a questionnaire inquiring (...) about the want or desire to perform behaviors “at the present moment (right now).” Items related to physical activity (e.g., “move my body”) and sedentary behaviors (e.g., “do nothing active”). An exploratory structural equation model (ESEM) revealed that 10 items should be retained, loading onto two factors (5 each for Move and Rest). In Study 2, an independent sample (n= 444) confirmed these results and found that Move and Rest desires were associated with stage-of-change for exercise behavior. In Study 3, 127 community-residing participants completed the CRAVE at 6-month intervals over two years- two times each session. Across-session interclass correlations (ICC) for Move (ICC = 0.72–0.95) and Rest (ICC = 0.69–0.88) were higher than when they were measured across 24-months (Move: ICC = 0.53; Rest: ICC = 0.49), indicating wants/desires have state-like qualities. In Study 4, a maximal treadmill test was completed by 21 university students. The CRAVE was completed immediately pre and post. Move desires decreased 26% and Rest increased 74%. Changes in Move and Rest desires were moderately associated with changes in perceived physical fatigue and energy. In Study 5, 41 university students sat quietly during a 50-min lecture. They completed the CRAVE at 3 time points. Move increased 19.6% and Rest decreased 16.7%. Small correlations were detected between move and both perceived energy and tiredness, but not calmness or tension. In conclusion, the CRAVE scale has good psychometric properties. These data also support tenets of the WANT model of motivation states for movement and rest (Stults-Kolehmainen et al., 2020a). Future studies need to explore how desires to move/rest relate to dynamic changes in physical activity and sedentarism. (shrink)

There have been recent concerns about an “epidemic of loneliness” during the pandemic, given the pervasiveness of loneliness in the population and its harmful effects on health and well-being. Therefore, it is important to establish the correlates of loneliness. The purpose of the current study was to explore how loneliness relates to a construct termed mattering, which is the feeling of being important to other people. Mattering was assessed with multiple measures in the current study (e.g., mattering in general, fears (...) of not mattering, and mattering to peers). A sample of 172 female psychology undergraduate students aged 18–25 years completed self-report measures of general mattering, mattering to peers, anti-mattering, fear of not mattering, and state and trait loneliness. As predicted, lower levels of both general mattering and mattering to peers were associated with higher state loneliness. Higher feelings of anti-mattering (feelings of being invisible and insignificant to others) and fears of not mattering were associated with greater trait loneliness, as well as a reduced sense of mattering to friends. The findings illustrate that feeling as though one does not matter to others (i.e., feeling insignificant and unimportant) is associated with increased state and trait loneliness among young women. Implications are discussed for loneliness theory and how these results can enhance both clinical understanding and practice. (shrink)

In response to the Covid‐19 pandemic, health care systems worldwide canceled or delayed elective surgeries, outpatient procedures, and clinic appointments. Although such measures may have been necessary to preserve medical resources and to prevent potential exposures early in the pandemic, moving forward, the indirect effects of such an extensive medical shutdown must not outweigh the direct harms of Covid‐19. In this essay, we argue for the reopening of evidence‐based health care with assurance provided to patients about the safety and necessity (...) of high‐value vaccinations, screenings, therapeutics, and procedures. To ensure that virtually all non‐Covid‐related services do not come to a halt again, health care systems and physician practices must preemptively increase their capacity, secure adequate personal protective equipment to safeguard health care personnel, and develop a measured approach to reclosing such routine health care, should it become necessary in the future. (shrink)

Volume 20, Issue 4, May 2020, Page 59-61.

Physicians, scholars, and policymakers continue to be concerned about conflicts of interests among health care providers. At least two main types of objections to conflicts of interest exist. Conflicts of interests may be intrinsically troublesome if they violate providers’ fiduciary duties to their patients or they contribute to loss of trust in health care professionals and the health care system. Conflicts of interest may also be problematic in practice if they bias the decisions made by providers, adversely impacting patient outcomes (...) or wastefully increasing health care costs. This latter objection may be observed in differences in the prescriptions written, procedures performed, or costs billed by health care professionals who have conflicting interests, when compared to those that do not have such financial relationships. (shrink)

Before there was the digital divide there was the analog divide– and universal service was the attempt to close that analogdivide. Universal service is becoming ever more complex in terms ofregulatory design as it becomes the digital divide. In order to evaluatethe promise of the next generation Internet with respect to the digitaldivide this work looks backwards as well as forwards in time. Byevaluating why previous universal service mechanisms failed andsucceeded this work identifies specific characteristics ofcommunications systems – in particular (...) in billing and managinguncertainty – and argues that these characteristics underliesuccess or failure in terms of technological ubiquity. Developing a setof characteristics of services rather than a set of services is afundamental break with the tradition of universal service. In fact, theimplications of our proposal is that basic characteristics in theoffering of the service rather than the absolute price are critical toclose the digital divide: certainty of total charge, ability to avoiddeposits or disconnection via best effort service, and payer-basedcontrol of all charges. While all of these principles sound obvious infact none of these hold in the telephony network. Universal service hasevolved from common carriage (serve all with no discrimination) to aright to basic services (100% penetration). Universal service isnow discussed as the digital divide, as the access to information asopposed to services becomes increasingly critical. However, we arediscussing in this paper access to the bits and the network rather thanaccess to the information (or intellectual property) once connected. Theprovision of universal service is seen as a technical problem only in thatthe technology costs money – universal service debates have longbeen the domain of economists. Yet the design of protocols has been thedomain of engineers, the building of systems the corporate domain, andthe discussion of equity the interest of ethicists. The design ofprotocols can define the parameters of the corporate decision-makers,the variables of the economist, and the questions for the ethicist. Thedesign decisions made at the fundamental levels can make communicationsequity more or less likely. In this work I focus on the design ofprotocols for the next generation Internet, protocols which willfundamentally change the best-effort nature of Internet services.Building on the economic and ethnographic work of others I argue thatthe effects of protocols adoption on universal service can be predictedto some degree. By examination of past and current technologies Iexamine a set of technical mechanisms to determine how such mechanismsmight harm or enhance universal service. I define each mechanism (e.g.denial of entry) and offer observations about each particularmechanism''s implicit pricing assumptions. I close with a discussion ofinterest to ethicists and regulators on evaluating communicationsprotocols with respect to universal access. Protocols for developingmultiple qualities of service for packet-switched networks have focusedon economic efficiency (e.g. Mackie-Mason, 1995; Choi, Stahl &Winston, 1997; Shapiro & Varian, 1998), billing to encouragewidespread adoption of network innovations (e.g. Xie & Sirbu, 1985)and billing in a manner consistent with the underlying network (e.g.Clark, 1996). Here we examine a set of protocols which include varyingquality of service mechanisms with respect to the compatibility of theprotocols with universal access. (shrink)

What causes adolescents to develop consumer’ ethical beliefs? Prior research has largely focused on the negative influence of peers and negative patterns of parent–child interactions to explain risky and unethical consumer behaviors. We take a different perspective by focusing on the positive support of parents and peers in adolescent social development. An integrative model is developed that links parental and peer support with adolescents’ self-worth motives, their materialistic tendencies, and their consumer ethical beliefs. In a study of 984 adolescents, we (...) demonstrate support for a sequential mediation model in which peer and parental support is positively related to adolescents’ self-esteem and feelings of power, which are each associated with decreased materialism as a means of compensating for low self-worth. This reduced materialism is, in turn, associated with more ethical consumer beliefs. (shrink)

Must a society aim indefinitely for continued economic growth? Proponents of economic growth advance three central challenges to the idea that a society, having attained high levels of income and wealth, may justly cease to pursue further economic growth: if environmentally sustainable and the gains fairly distributed, first, continued economic growth could make everyone within a society and globally, and especially the worst off, progressively better off; second, the pursuit of economic growth spurs ongoing innovation, which enhances people’s opportunities and (...) protects a society against future risks; and third, continued economic growth fosters attitudes of openness, tolerance, and generosity, which are essential to the functioning of a liberal democratic society. This article grants these challenges’ normative foundations, to show that, even if one accepts their underlying premises as requirements of justice, a society may still justly cease to aim for economic growth, so long as it continues to aim for and realize gains on other dimensions. I argue that, while continued economic growth might instrumentally serve valuable ends, it is not necessary for their realization, as a society can achieve these ends through other means. (shrink)

We consider the relation between past and future events from the perspective of the constructive episodic simulation hypothesis, which holds that episodic simulation of future events requires a memory system that allows the flexible recombination of details from past events into novel scenarios. We discuss recent neuroimaging and behavioral evidence that support this hypothesis in relation to the theater production metaphor.

An ethnographic field study about the informed consent process in investigational drug trials for seriously ill persons with hepatitis C suggests that nurses and physicians referred to these trials as giving treatment, even though they involved placebos. Interview data and informed consent documents contained frequent references to the term `treatment trial' or `treatment'. Although these findings were unexpected and not the original focus of our study, we consider them in the light of an extensive literature on the `therapeutic misconception' that (...) has been described among physicians and patients with AIDS and other serious illnesses. We also suggest that certain organizational and professional characteristics of nursing and medicine reinforce this tendency to refer to the trials as treatment. Implications for further research are provided. (shrink)

Individuals often face administrative hurdles in attempting to access health care, public programmes, and other legal statuses and entitlements. These ordeals are the products, directly or indirectly, of institutional and policy design choices. I argue that evaluating whether such ordeals are justifiable or desirable instruments of social policy depends on assessing, beyond their targeting effects, the process-related burdens they impose on those attempting to navigate them and these burdens’ distributive effects. I here examine specifically how ordeals that levy time costs (...) reduce and constrain individuals’ free time, and how such time-cost ordeals may thereby create, deepen and compound disadvantages. (shrink)

Transplantation research on samples and organs from deceased donors in England, Wales and Northern Ireland is under threat. The key problems relate to difficulties encountered in gaining consent for research projects, as distinct from consent to donation for clinical transplantation. They are due partly to the terms of the Human Tissue Act 2004 (the 2004 Act), and partly to its interpretation by the Human Tissue Authority (HTA). They include excessive interaction with donor representatives regarding ‘informed consent’ to research projects, uncertainty (...) as to the scope and duration of a donor's ‘authority’ over an organ, and restrictions caused by the apparent need for licensing of transplantation research under the 2004 Act, combined with lack of certainty, or guidance, as to the distinction between ‘research’, which requires a licence, and ‘service development’, which does not. In our view this confusion hinders and deters Specialist Nurses for Organ Donation in approaching donor representatives and discussing possible research projects with them. It has also, as we have reported elsewhere, led to abandonment of research projects for fear of liability, despite both Research Ethics Committee (REC) approval and donor consent. Such problems do not seem to occur under the transplant laws of most other comparable jurisdictions. The Transplantation Ethics Symposium, ‘The ethics of organ retrieval: goals, rights and responsibilities’, hosted by the MRC Centre for Transplantation at King's College London in December 2010, revealed that many senior clinicians and researchers, administrators, and lawyers are both unclear and in disagreement concerning the effects of the 2004 Act and the extent to which it is adhered to or ignored in practice. In this paper we examine the difficulties encountered and suggest solutions based on a less restrictive interpretation of the 2004 Act, or, more probably, a regulatory change under its authority. We propose that, in the long term, a law which includes consent for REC-approved research within the general consent for organ donation and transplantation seems preferable to the present system, both ethically and in practical terms. (shrink)

Several contemporary scholars have embraced the aesthetic resources in the Black Radical Tradition for the purpose of revitalizing the democratic project. Ironically, however, many drawn to the radical potential of fugitive escape are concerned about flight or exodus from the democratic project itself resulting in a defense of politics that constricts the possible benefits of fugitive aesthetics for democratic life. This article draws on the work of Alain Locke, a key figure of the Harlem Renaissance, to suggest another way in (...) which we might follow Black fugitive aesthetics. Through an engagement with Locke, I theorize the notion of a fugitive bearing associated with a set of sensibilities that we might cultivate in order to approach the task of democratic transformation as a “reverent vandalism.” This article also challenges dismissive readings of Locke’s aestheticism by closely reexamining his commitment to expressive autonomy in connection with his theory of democracy. His “New Negro” avant-garde, like the fugitive, remains tethered to political life even while seeking a freedom that is unavailable within the strictures of the standing normative order. (shrink)

Recent decades have seen a dramatic transformation in the mode of governing, with government increasingly outsourced to a network of private actors, spanning education, prisons, regulation, arbitration, the military, and access to healthcare and welfare. Chiara Cordelli’s The Privatized State probes the ethical and philosophical questions raised by this transformation, and develops a distinctive account of the wrong of privatization: that a privatized government cannot be a legitimate government. In so doing, Cordelli engages and advances not only pressing questions about (...) privatization, but also broader questions about public administration, political representation, democratic authority, and neorepublicanism. This symposium brings together scholars for a wide-ranging discussion of this transformation in governance and the deep and challenging questions it raises. (shrink)

Machiavelli consistently advises that well-ordered republics must ‘keep their citizens poor’. Although this maxim recurs throughout the Discourses, Machiavelli never directly elaborates on what this prescription for civic poverty requires. To the limited extent that this maxim has received critical examination, it is commonly regarded as contending that citizens must live in a condition of material austerity. Through an analysis of Machiavelli's writings on the German free cities, this article challenges this interpretation and argues that rather than requiring that citizens (...) live at some particular level of poverty, the maxim instead requires only that citizens maintain certain attitudes towards poverty and wealth. (shrink)

Heathen Soul Lore Foundations presents a living spiritual landscape, rooted in ancient Germanic languages and understanding, offered for modern Heathens to explore and use in their own spiritual practice. This book also presents an approach for identifying and exploring ancient concepts of 'what a soul is' that may be of interest to followers of other branches of historically based modern Paganism, and to scholars of comparative religion. Linguistic analysis, literature, folklore, comparative religion, anthropology, esoteric and philosophical approaches are used to (...) analyze old Germanic-language words relating to 'the soul'. The following souls, identified through this process, are thoroughly reviewed: Ferah, Ahma, Ghost, Hama, Aldr, Mod, Hugr, Sefa, and Saiwalo. Both scholarly and inspirational perspectives are taken, intended to stimulate both intellectual and imaginative exploration of these soul-concepts and the world-view which opens out from them. This deluxe edition provides full-color illustrations on premium quality paper in a linen-wrap hardcover book. The illustrations are chosen to stimulate engagement of the imagination in comprehending these abstract entities and their metaphysical contexts. // Review by Diana L. Paxson, author of "Essential Asatru: Walking the Path of Norse Paganism": "Since she first sent me the article on "Heathen Full-Souls" for Idunna: A Journal of Northern Tradition in 2006, I have been fascinated by Winifred Hodge Rose's development of the concept of the souls as an interactive system. I am delighted to see the full presentation of so many years of patient research and contemplation becoming available at last. In Winifred's hands, philology becomes a spiritual adventure, as words from the old Germanic languages reveal new insights into who we are and our place in the spiritual universe." // Review by John Michael Greer, author of "A World Full of Gods": "Winifred Rose has done an excellent job of gathering and synthesizing material about Heathen soul lore from a wide range of disparate sources. The resulting book is a scholarly, thorough resource that belongs on the bookshelf of every Heathen, and everyone interested in the subject.". (shrink)

La pièce A Wife in the Right d’Elizabeth Griffith (1772) met en scène un personnage de nabab, un Britannique revenu de l’Inde après y avoir fait fortune par des voies impérialistes. Cet article s’intéresse à l’usage que fait Griffith de la figure du nabab, et explore comment, dans cette pièce, le thème de l’identité nationale s’articule autour de l’écart potentiel entre l’apparence extérieure et le caractère intérieur. L’autrice propose un premier pas vers l’élargissement du champ des connaissances entourant les femmes (...) dramaturges du long dix-huitième siècle, en replaçant cette pièce de Griffith dans le contexte des textes philosophiques et médicaux de la période. Plus précisément, ce sont les écrits du philosophe Adam Smith et les traités médicaux de George Cheyne qui éclairent cette lecture d’A Wife in the Right : le personnage du nabab et le commentaire sur l’identité nationale de Griffith s’inscrivent dès lors dans un cadre plus large, celui de la mise en scène de soi au dix-huitième siècle. (shrink)