There is evidence of persistent inequalities in household financial protection of health and drugs spending in Latin America. Despite the expansion of coverage, strong inequalities persist in access to health and family spending on drugs in the region. Out-of-pocket spending in medicines is regressive in greater need for affordable medicines.

Bribing doctors for preferential treatment is rampant in the healthcare system of developing countries like Vietnam. Although bribery raises the out-of-pocket expenditures of patients, it is so common to be deemed an “envelope culture.” Given the little understanding of the underlying mechanism of the culture, this study employed the mindsponge theory for reasoning the mental processes of both patients and doctors for why they embrace the “envelope culture” and used the Bayesian Mindsponge Framework (BMF) analytics to validate our (...) reasoning. Analyzing responses from 1042 Vietnamese patients, we discovered that bribing doctors can help patients reduce the destitution risk induced by treatment. Such effect of doctor bribery remains consistent among patients that have to pay high daily costs (e.g., accommodation and subsistence fees) regardless of their employment status. Nevertheless, for patients with no or unstable jobs, their risks of destitution increase if they have to pay more thank-you money. These findings suggest that doctor bribery is an adaptive strategy for patients in an environment where the healthcare supply cannot meet the actual demand. Moreover, healthcare equity is greatly exacerbated due to the envelope culture, as vulnerable individuals are exposed to a greater threat of poverty. At the same time, those with good economic conditions get preferential treatment by paying a higher amount of thank-you money. Healthcare workers’ ethics must be the top priority for an equitable and proper healthcare system. (shrink)

Background The world is urbanizing rapidly; more than half the world’s population now lives in urban areas, leading to significant transition in lifestyles and social behaviours globally. While offering many advantages, urban environments also concentrate health risks and introduce health hazards for the poor. In Bangladesh, although many public policies are directed towards equity and protecting people’s rights, these are not comprehensively and inclusively applied in ways that prioritize the health rights of citizens. The country is thus facing many issues (...) that raise moral and ethical concerns. Methods A narrative literature review was conducted between October 2016 and November 2017 on issues related to social justice, health, and human rights in urban Bangladesh. The key questions discussed here are: i) ethical dilemmas and inclusion of the urban poor to pursue social justice; and ii) the ethical obligations and moral responsibilities of the state and non-state sectors in serving Bangladesh’s urban poor. Using a Rawlsian theory of equality of opportunity to ensure social justice, we identified key health-related ethical issues in the country’s rapidly changing urban landscape, especially among the poor. Results We examined ethical dilemmas in Bangladesh’s health system through the rural–urban divide and the lack of coordination among implementing agencies. The unregulated profusion of the private sector and immoral practices of service providers result in high out-of-pocket expenditures for urban poor, leading to debt and further impoverishment. We also highlight policy and programmatic gaps, as well as entry points for safeguarding the right to health for Bangladeshi citizens. Conclusions The urban health system in Bangladesh needs a reform in which state and non-state actors should work together, understanding and acknowledging their moral responsibilities for improving the health of the urban poor by engaging multiple sectors. The social determinants of health should be taken into account when formulating policies and programs to achieve universal health coverage and ensure social justice for the urban poor in Bangladesh. (shrink)

Progress towards Universal Health Coverage (UHC) requires making difficult trade-offs. In this journal, Dr. Margaret Chan, the WHO Director-General, has endorsed the principles for making such decisions put forward by the WHO Consultative Group on Equity and UHC. These principles include maximizing population health, priority for the worse off, and shielding people from health-related financial risks. But how should one apply these principles in particular cases and how should one adjudicate between them when their demands conflict? This paper by some (...) members of the Consultative Group and a diverse group of health policy professionals addresses these questions. It considers three stylized versions of actual policy dilemmas. Each of these cases pertains to one of the three principal dimensions of progress towards UHC: which services to cover first, which populations to prioritize for coverage, and how to move from out-of-pocket expenditures to pre-payment with pooling of funds. Our cases are simplified to highlight common trade-offs. While we make specific recommendations, our primary aim is to demonstrate both the form and substance of the reasoning involved in striking a fair balance between competing interests on the road to UHC. (shrink)

In China, state investment into public hospitals has radically decreased since the early 1980s and has brought on the dismantling of the healthcare system in most parts of the country, especially in rural areas. As a result of this overhaul, the majority of public hospitals have needed to compete in the so-called socialist market economy. The market economy stimulated public hospitals to modernize, take on highly qualified medical professionals, and dispense new therapies and drugs. At same time, liberalization has clearly (...) affected the attitude and behavior of both medical professionals and the general public. The public has many concerns about the healthcare system for various reasons: there are long hospital waiting lists, patients experience difficulties in obtaining an appointment to see a qualified doctor, and, over the past decades, there has been an increase in out-of-pocket healthcare expenditure. These and other changes in post-reform China have radically reshaped the doctor–patient interaction, which is increasingly eroded by tension and violence. (shrink)

As pressures increase to contain growing healthcare expenditures, there is currently a prominent rise in the shift of healthcare costs to patients in the form of deductibles, co-pays, and co-insurance. Rising co-payments are part of a larger picture of increasing overall out-of-pocket healthcare expenditures. From 1990 to 2000, per capita out-of-pocket payments for healthcare reached $707 in the United States, and doubled in several European countries with universal health insurance, reaching $396 in Denmark, $290 in Germany, (...) and $466 in Italy in 2000. (shrink)

Costs at the end of life disproportionately contribute to health care costs in the United States. Addressing these costs will therefore be an important component in making the U.S. health care system more financially sustainable. In this paper, we explore the moral justifications for having discussions of end-of-life costs in the doctor-patient encounter as part of an effort to control costs. As health care costs are partly shared through pooled resources, such as insurance and taxation, and partly borne by individuals (...) through out-of-pocket expenses, we separate our defense for, and approach to, discussing both pooled and individual aspects of cost. We argue that there needs to be a shift away from formulating the options as a dichotomous choice of paying attention to end-of-life costs versus ignoring such costs. The question should be how personal costs will be managed and how societal expenditures should be allocated. These are issues that we believe patients care about and need to have addressed in a manner with which they are comfortable. Conversations about how money will be spent at the end of life should begin before the end is near. We propose discussing costs from the onset of chronic illness and incorporating financial issues in advance care planning. Through these approaches one can avoid abruptly and insensitively introducing financial issues at the very conclusion of a person's life when one would prefer to address the painful and important issues of spiritual and existential loss that are appropriately the focus when a person is dying. (shrink)

A recent New York Times/CBS poll shows that nearly 80 percent of respondents think the American “health care system is headed toward a crisis because of rising costs.” Indeed, the public has become well acquainted with ominous-looking graphs that detail the nation’s health care spending. The increasingly steep slope of the graph showing the percentage of gross domestic product spent on health care invites tongue-in-cheek projections for when health care spending will finally consume it all.High aggregate health care expenditures (...) result from the low prices individuals pay for coverage. On average, patients pay only five cents out-of-pocket for every dollar of hospital charges they generate. The remainder is paid by private or public health insurance. Patients pay slightly more for physicians’ services—nineteen cents on each dollar. For health care of all types, patients pay approximately twenty-four cents on each dollar. With individuals paying what amount to fire sale prices for health care, it should come as no surprise that they purchase a great deal of coverage. (shrink)

This chapter explores two questions in detail: How should we determine the threshold for costs that individuals are asked to bear through insurance premiums or care-related out-of-pocket costs, including user fees and copayments? and What is an adequate relationship between costs and benefits? This chapter argues that preventing impoverishment is a morally more urgent priority than protecting households against income fluctuations, and that many health insurance plans may not adequately protect individuals from health care costs that threaten to drop (...) their financial status below a decent minimum. A design that places greater emphasis on preventing impoverishment and finances the achievement of that goal by reducing unnecessary subsidies to better-off households would better accord with a sufficientarian approach to health care. -/- . (shrink)

Purpose With the rapid improvement in digital infrastructure, the popularity of digital devices and smartphones in every pocket, the yearning to stay connected with others has increased manifold, especially in youngsters. This has raised multiple concerns primarily related to the problematic usage of the internet (PUI). The current research study aims to scrutinize the association between PUI, psychological and mental health (PMH), social media fatigue (SMF), fear of missing out (FOMO), desire to disconnect (DD) and its relation with a (...) novel phenomenon of joy of missing out (JOMO). Design/methodology/approach The present research study embraces the empirical research method through quantitative analysis. The proposed theoretical model was empirically tested using primary data, collected through a self-designed structured questionnaire. The study sample included individuals between 16 and 39 years of age as these are the most active demographics on social media. The model is empirically tested with the help of structural equation modeling applied using software IBM AMOS 20.0 and SPSS 22.0. Initially, first-order confirmatory factor analysis was conducted, to measure and test the fit indices of the proposed model. Secondly, path analysis using structural equation modeling was carried out for the model. Findings Empirical synthesis of this research shows that PUI significantly and positively impacts mental and psychological health, FOMO and SMF. Also, SMF significantly and positively affects the DD which significantly and positively affects the JOMO. However, as depicted by the results of this study, FOMO have no considerable impact on SMF. Originality/value A study that connects the PUI with PMH, SMF and FOMO is rare to find. Second, this study uses data collected from social media users of India in the age group of 16–39 years. This slice of the population is most active in internet, and internet-enabled platform and are scantly studied, especially in the Indian context. This makes the study more exciting and crucial. (shrink)

My pocket calculator (Cal) has certain arithmetical abilities: it seems Cal calculates. That calculating is thinking seems equally untendentious. Yet these two claims together provide premises for a seemingly valid syllogism whose conclusion -- Cal thinks -- most would deny. I consider several ways to avoid this conclusion, and find them mostly wanting. Either we ourselves can't be said to think or calculate if our calculation-like performances are judged by the standards proposed to rule out Cal; or the standards (...) -- e.g., autonomy and self-consciousness -- make it impossible to verify whether anything or anyone (save myself) meets them. While appeals to the intentionality of thought or the unity of minds provide more credible lines of resistance, available accounts of intentionality and mental unity are insufficiently clear and warranted to provide very substantial arguments against Cal's title to be called a thinking thing. Indeed, considerations favoring granting that title are more formidable than generally appreciated. (shrink)

The return of individual research results and incidental findings from biobanking research is a much debated ethical issue globally but has extensive relevance in India where the burden of out of pocket health care expenses is high for the majority. The views of 21 ethics committee (EC) members and 22 researchers from Bengaluru, India, concerning the ethics of biobanking research were sought through in‐depth interviews using an unfolding case vignette with probes. A shared view among most was that individual (...) research results which are ‘actionable’ or have ‘clinical significance’ should be returned to the sample contributors through their treating physicians. This was seen as an ethical obligation and a moral duty on the side of the researcher to “give back” to the person who contributed to the research. The challenges foreseen were that of resources, both financial and personnel, for the time and counseling needed to accompany the disclosure of results. Perceptions of ‘ownership’ appear to influence the concept of benefit sharing. While benefit sharing in financial terms was considered ethically challenging, certain researchers and ethics committee members made a case for “two way altruism” where the researcher in return for the altruistic ‘valuable contribution’, shares with the contributor/ community, benefits of the research which could include research findings, improved patient care, and more affordable access to the new diagnostic tests or products arising from the research. This defines the emerging ethic of “giving back” which goes beyond individual rights and ensures reciprocity and distributive justice. (shrink)

Making transformative services such as healthcare accessible to low-income consumers is an ethical challenge of vital importance to marketers. However, most low-income consumers across the world are excluded from the market for such transformative services because of financial constraints arising from poverty. In this paper, instead of focusing on the micro-interplay between firms and consumers, we examine the macro-interplay among firms, consumers, and public policy in addressing the ethical challenge of market inclusion at the base of the pyramid. Specifically, we (...) examine how the Vietnam government used a policy of free and universal health insurance for children under the age of six as a means of lowering affordability barriers and fostering market inclusion in the healthcare market. Overnight in 2005, all children under the age of six living anywhere in Vietnam became eligible for free health insurance. Using this policy intervention as a natural experiment, we compare market inclusion outcomes of children under the age of six with older children who were ineligible before and after the program was implemented. We show that lowering affordability barriers through public policy increases access to target services, increases consumers’ overall out-of-pocket spending, and increases access to complementary services. By adopting a macromarketing lens, this study makes a strong case for collaboration among firms, governments, and communities in addressing the ethical challenge of system-wide market inclusion in base-of-the-pyramid markets. (shrink)

Are psychotherapy clients who pay via health insurance more likely to receive Diagnostic and Statistical Manual of Mental Disorders (4th ed. [DSM-IV], American Psychiatric Association, 1994) diagnoses than identical clients who pay out of pocket? Previous research (Kielbasa, Pomerantz, Krohn, & Sullivan, 2004) indicates that when psychologists consider a mildly depressed or anxious client, payment method significantly influences diagnostic decisions. This study extends the scope of the previous study to include clients whose symptoms are even less severe. Independent practitioners (...) responded to vignettes of clients whose profiles deliberately included subclinical impairment and a high level of functioning. Half of the participants were told that the clients would pay via managed care; the other half were told that the clients would pay out of pocket. As in the earlier study, payment method had a highly significant impact on diagnosis such that relative to out-of-pocket clients, managed care clients were much more likely to be assigned DSM-IV diagnoses. In addition, a noteworthy percentage of participants assigned diagnoses regardless of payment method. Ethical implications are discussed. (shrink)

IntroductionHigh healthcare costs make illness precarious for both patients and their families’ economic situation. Despite the recent focus on the interconnection between health and financial risk at the systemic level, the ethical conflict between concerns for potential health benefits and financial risk protection at the household level in a low-income setting is less understood.MethodsUsing a seven-step ethical analysis, we examine a real-life dilemma faced by families and health workers at the micro level in Ethiopia and analyse the acceptability of limiting (...) treatment for an ill newborn to protect against financial risk. We assess available evidence and ethical issues at stake and discuss the dilemma with respect to three priority setting criteria: health maximisation, priority to the worse-off and financial risk protection.ResultsGiving priority to health maximisation and extra priority to the worse-off suggests, in this particular case, that limiting treatment is not acceptable even if the total well-being gain from reduced financial risk is taken into account. Our conclusion depends on the facts of the case and the relative weight assigned to these criteria. However, there are problematic aspects with the premise of this dilemma. The most affected parties—the newborn, family members and health worker—cannot make free choices about whether to limit treatment or not, and we thereby accept deprivations of people’s substantive freedoms.ConclusionIn settings where healthcare is financed largely out-of-pocket, families and health workers face tragic trade-offs. As countries move towards universal health coverage, financial risk protection for high-priority services is necessary to promote fairness, improve health and reduce poverty. (shrink)

continent. 1.2 (2011): 136-140. In early 2011, Cow Heavy Books published The Official Catalog of the Library of Potential Literature , a compendium of catalog 'blurbs' for non-existent desired or ideal texts. Along with Erinrose Mager, I edited the project, in a process that was more like curation as it mainly entailed asking a range of contemporary writers, theorists, and text-makers to send us an entry. What resulted was a creative/critical hybrid anthology, a small book in which each page opens (...) to a new iteration of textual desire. These texts explore the material possibilities of the book. Somewhat parallel to the call of N. Katherine Hayles who, in her book Writing Machines , urges literary theorists to take up the practice of Medium Specific Analysis (to account for the way the medium in which it is presented conditions or at least bears on a literary text). I see in the imagined works of The Official Catalog a call for the innovative writers of today to become Medium-Responsive. This would mean thinking through the specific (materially constrained) possibilities offered by the media in which texts are presented, and in thinking of the literary text as a kind of art in the greater context of other arts and the book as a medium situated within the context of many other media. In doing so, the contemporary writer refutes the chorus of critics who lament the death of the book by consistently reinvigorating literary innovation. The following are selections from The Official Catalog of the Library of Potential Literature that show possible paths for (thinking about) new writing that engages with its medium. —Ben Segal, Editor THE CUBE Even the most radical non-linear texts have tended to exploit or subvert only the sequential possibilities of print—from the continuous loop of Joyce's Finnegans Wake to the shuffled cards of Marc Saporta's Composition No. 1 —but The Cube takes such multiplicities to an entirely new level. Set in a grid, the book's words can be read conventionally, across the page, as well as down each column—with either route making complete grammatical sense. But they can also be read as stacked strata and mined like lexical core samples through the layered pages of the book. Each path tells the same story from a different perspective (the narrative, naturally, hinges on the potential outcomes of a throw of cubed dice). By opening up the z-axis to reading in this way, The Cube recognizes the book as a three-dimensional sculptural space. Taking its lead from Armand Schwerner's (If Personal) and Raymond Queneau's Cent mille milliards de poèmes , The Cube reads like a experiment by Christian Bök precision printed by Emily McVarish. Craig Dworkin is the editor, most recently, of The Consequence of Innovation: 21st Century Poetics (Roof Books, 2008), The Sound of Poetry/The Poetry of Sound , with Marjorie Perloff (U. Chicago Press, 2009), and Against Expression: An Anthology of Conceptual Writing , with Kenneth Goldsmith (Northwestern UP, 2010). He teaches at the University of Utah. HE GOES In He Goes , we read notes, letters and e-mails from a scholar father to his novelist daughter. We read of the father's musings on Beckett, on Pinter, on Anne Frank; his description of a woman hanging laundry from a line. We read about his journey toward dying, followed by a brief, third person account of his death, and his obituary. Then a long series of blank pages that demand to be read in real time, non-sentence by non-sentence, blank page by blank page. Finally—and it is here that this peculiar little book begins to soar—the dead father writes to his as-of-yet-still-living daughter. He does not write from death. He does not write from life. The words unprint, unstamp, unkindle. Still, they require no translation. The father "writes" (for lack of a better word) about the serendipitous, the commonplace; he recommends another book. He jokes. He asks his daughter how her stomach is. He says forget about presence in absence, darling; screw words as memorial and the guys in garbage cans and loss as redemption and I can't go on I must go on. He goes, "Love, Fodder." He goes, "incidentally." He goes, "I thought you might like to know." Elizabeth Graver is the author of a story collection, Have You Seen Me? , and three novels: Unravelling ; The Honey Thief ; and Awake . Her work has been anthologized in Best American Short Stories , Best American Essays , and Prize Stories: the O. Henry Awards . She teaches at Boston College. THE PAPER ARCHIVIST A stunning package and a triumph of imagination, The Paper Archivist at times looks to be less a book than an abstract expressionist painting. Softly bound, its contents unfold to a single sheet of uneven thickness and texture—a canvas splattered with colored lines, stickers, broken sentences, and nonsense pictographs. But by following the directions to fold, dip, smell, rub, scratch, and tear the sheet according to the contingencies of the weather and using only the objects at hand, the reader slowly brings the forces hidden in the noise into a glorious sculptural convergence, processing a different story and shape each time. This is the rare book that continues to stir, whirl, and pop on every new reading. Sean Higgins blogs at BOMBlog where he is responsible for the column Volumes and Territories, as well as Ghost Island , a fledgling collaborative intellectual collective. THE SLOW BOOK The Slow Book , written by an anonymous author at the dawn of literacy, on a minor planet (otherwise notable only as the source of that exceptionally hardy, not very tasty grain called “shef” sowed on hostile planets as an early step to colonization), and encoded into a series of punctures on a strip of copper coiled inside a clever device, something between a player piano and an old-fashioned film projector, is being released into print, as was the author’s intention, at a rate of one word per century (local time). Each word is, across the Forty Galaxies, agreed to be uncannily apt for the century in which it appears—even “of,” in a century during which the highest value was attached to fidelity, whether to ideals, worlds, or romantic love; even “the,” which governed two centuries, one extraordinarily materialistic, during which advances in propulsion and navigation accelerated the exchange of exceptional objects between the remotest planets of the Forty, and one in which the central concern, both of philosophers and the common man, was whether, in an age of rapidly proliferating hypothetical worlds, anyone or anything concretely existed at all. Even those words published long before interstellar contact can be seen in retrospect to have transgalactic pertinence. As a result, attempts to abstract the machine from its publishers, Hobson & Hui, in order to “predict the future” for insight or gain by “fast- forwarding” the copper strip have been many and ingenious. While, in centuries of skepticism (“maybe”), or of unrest (“go”) the book has been nearly forgotten, in others it seems to haunt every thought, every deed, despite the fact that the subject of The Slow Book is still unclear. So far only a few sentences exist in print; everyone knows them, can quote them, offer the standard exegeses and assorted heresies; yet certainties are the stuff of adolescence; mature readers are forced to acknowledge that these sentences are probably only a preamble to the main argument. They contain no proper nouns, nor can we identify any definite theme. There is even disagreement about their tone, whether coolly ironic, as some insist, or ardent. The appearance of an unusual grammatical case, sometimes called the future pluperfect continuous, used to describe events that at some future point will have always been true (but are not yet)—hitherto known to appear only in the synthetic dogmas of the Thanatographical Society, and in certain highly circumscribed religious contexts—has suggested to some scholars that the Slow Book was originally intended for ritual use, but the proximity of the usage to a term designating a small hand plow that, as Pott and Mielcke have convincingly shown, would have borne a distinctly obscene double meaning in its culture of origin in the author’s time, argues otherwise. It is likewise unclear whether the situation that seems to be—with teasing incompleteness—sketched out in these few lines is intended as an illustration of general principles, a case study, a dramatic scene, or an extended metaphor. In short, we have no idea what The Slow Book is about. In our own time, we believe that it is almost certainly a work of fiction, but that may be because we live in the century of “if”. In each age, perhaps, we see the book we most need to read. Some have dared to suggest that the metal strip is blank until, with millennial fanfare, it advances into its new position, that no ur-text exists, that the book itself is brought into being—written—by our need. But that is exactly the sort of thing we would believe, in 7645. Shelley Jackson is the author of the story collection The Melancholy of Anatomy , the novel Half Life , and hypertexts including Patchwork Girl . The recipient of a Howard Foundation grant, a Pushcart Prize, and the 2006 James Tiptree Jr Award, she has also written and illustrated several children's books, including The Old Woman and the Wave ; Sophia, the Alchemist's Dog ; and Mimi's Dada Catifesto . Her stories and essays have appeared in Conjunctions , McSweeney's , The Paris Review , and Cabinet Magazine . In 2004 she launched her project SKIN , a story published in tattoos on 2095 volunteers. THE BOOK OF SOUNDS The Book of Sounds is just that: a book of sounds made when letters are construed in new ways to bring forth out of the alphabet new forms of speech. A book meant to be read out loud, The Book of Sounds is not unlike Laurie Anderson's O Superman or Brian Eno's Music for Airports in its attempt to make music out of the most primary and simplest of methods. It breaks language down to its barest bones and makes out of the page a drum that has never before been beaten upon. Peter Markus is the author of a novel, Bob, or Man on Boat (Dzanc Books) as well as two books of short fiction, Good, Brother and The Singing Fish , both of which were published by Calamari Press. A new collection of stories, We Make Mud , is now available from Dzanc Books. PARADISE OF THE BLIND by Celan Solen Although the reclusive Celan Solen published his first and only book in 1963—paying out-of-pocket for a limited edition of the slim collection No One May Have the Same Knowledge Again —he remained in American obscurity for almost three decades. In 1992 a micro-press in Istanbul brought out No One in Turkish. A German translation followed in 1995. Soon it became clear in literary circles Solen was a world-class (if highly unclassifiable) artist—lyrical, dense, enigmatic—who could undo the conventional short story in 397 words by inventing impossible worlds housed in impossible whirls (in “Small Sadnesses,” a single chartreuse tree frog in Borneo unknowingly holds time together by its very presence in the universe, while each letter of its tale refers, not to itself, but to the one preceding it in the alphabet). By his disappearance last year, Solen was considered master by a generation of writers and critics (except, alas, for those gentlemen in the Swedish Academy). Imagine, then, that generation’s delight at the discovery, locked away in the author’s safe-deposit box, of his second and final composition. Had Lynch’s Lost Highway been book instead of film, and had it been penned by Beckett at his least certain, revised by Barthelme at his most formally deranged, and typeset by Derrida at his most semiotically catastrophic, the result might have been something like Paradise of the Blind : interlacing narratives of a man composed of borrowed organs (whose most cheerless and difficult to locate, god, could only have been invented by an empty heart), a nonexistent medieval painting blamed for the ruin of future hope, and the spread of a philosophy that holds earth a mistake constantly recurring in the dream of a fish lying on the floor of the Atlantic (if the fish wakes, our world winks off)—all contained in a text packed with typed-over passages, torn postcards, poems that can be deciphered only when held up to a mirror, pages ornamented with trompe-l'œil paperclips and coffee stains and buzzing houseflies, some busy with illegible runes that dissolve when exposed to light, three that smell like roses or lemons (depending on whether a man or woman is reading), two that stain with the bloody fingerprints of the those who handle them, one that ignites when brushed with breath, thirteen sewn from baby skin, one that moans when touched, and one that screams—yet all without mass, unimaginable, and invisible. Lance Olsen is author of more than 20 books of and about innovative fiction, including, most recently, the novels Calendar of Regrets (2010) and Head in Flames (2009). He teaches experimental narrative theory and practice at the University of Utah. SUPERSTRUCTURE! by Barbara D'Albi As soon as I opened the third drawer of Barbara D'Albi's wooden novel, everything became hopeless. Now in Ithaca, there was no going back. And it wasn't just the intricate series of shelves, hinged doors and locked drawers which D'Albi layered into the book, no, lo, I was constructed anew by the story. Who else but D'Albi to imagine a God who becomes a carpenter and gets killed?! And makes it good! You want stories? D'Albi is a skyscraper, built with planes and levers. Momentarily I wondered where I could shelve this book, and then I thought: no matter; I couldn't put it down. Adam Robinson lives in Baltimore, where he runs Publishing Genius. He is the author of Adam Robison and Other Poems and Say, Poem. 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This beautifully illustrated book documents the exceptional postcard collection of Adolf Feller. In 1889 Feller, a Swiss entrepreneur, began collecting postcards on various business trips as mementos of his travels. When news of his hobby reached his friends and relatives, others began sending picture postcards as well. After his death, Feller's daughter, Elisabeth, continued to seek out postcards from around the world. The collection now includes 54,000 postcards from 140 countries, with especially impressive examples from 1893–1930, the height of the (...) picture postcard's popularity. A wonderful testament to one man's obsession, The World in Pocket-Size Format provides a new way to experience the history of the postcard as a means of both artistic expression and communication. (shrink)

This paper analyses the ethical considerations using the stakeholder theory on two specific domains of the newly implemented ‘Ayushman Bharat-Pradhan Mantri Jan Arogya Yojna ’ scheme by the Government of India. The paper recommends a solidarity-based approach over an entitlement based one that focuses on out-of-pocket expenses for the most vulnerable and a stewardship role from the private sector to ensure equity, accountability, and sustainability of PM-JAY scheme.

This book explores the making of health care rationing decisions through the analysis of three alternative decision makers: patients paying out of pocket; officials setting limits on treatments and coverage; and physicians at the bedside. Hall develops this analysis along three dimensions: political economics, ethics, and law. The economic dimension addresses the practical feasibility of each method. The ethical dimension discusses the moral aspects of these methods, while the legal dimension traces the most recent developments in jurisprudence and health (...) law. (shrink)

For individuals pursuing medically assisted gender transition, gender-affirming surgical treatments, such as oophorectomy (removal of the ovaries) and orchiectomy (removal of the testicles), cause sterility, and gender-affirming hormone treatment with medications (i.e., testosterone and estrogen) may negatively impact infertility. The major United States (US) medical associations already endorse fertility preservation (FP) through cryopreservation (i.e., “freezing” egg and sperm) for transgender individuals. Despite these endorsements from the relevant medical societies, medical insurance coverage for FP remains very limited in the US. Given (...) the high out-of-pocket costs for FP services, fertility preservation remains financially out of reach for many transgender individuals who may desire it. We present an ethical justification for universal FP coverage for all transgender and gender diverse (TGD) individuals who request this option during medically assisted gender transition. First, we argue that gender-affirming medical care is analogous to other medical interventions and treatment regimens that compromise fertility, such as cancer care, and that both types of interventions need to be afforded the same medical benefits and assistance in pursuing fertility goals. Second, we argue that the lack of FP for transgender individuals contributes to the ongoing and profound transphobia and anti-trans bias that has been exacerbated in the past several years across the healthcare landscape in the United States. We argue that the provision of FP coverage for transgender individuals is necessary for clinicians and third-party payers to state their unequivocal support for TGD patients and their healthcare needs. (shrink)

Background In the context of limited health care budgets in countries where Neglected Tropical Diseases are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost-effectiveness analyses may lead to biased and insufficiently justified priorities. Objectives The objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi-criteria decision-making matrix, and (...) 3) discuss the conditions under which this decision-making procedure should be carried out in a real-world decision-making context. Methods This paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi-criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases. Discussion Our in vitro multi-criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil-transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision-making process and we stress the limitations of this study exercise. Conclusion By exploring how several criteria relevant to the multi-facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

Private medical aids are essentially non-profit organisations that aim to deliver speedy treatment and should prevent members from unexpected, out of pocket expenses for medical care. However, although the latest statistics show that 16.2% of individuals in South Africa were members of medical aid schemes, making the promise of private healthcare accessible to a small percentage of the population, they are not without their own unique set of challenges. The restrictions that exist within the private sector have a direct (...) bearing on the types of healthcare services patients can access, which in turn impacts on the fundamental right to access healthcare. Using a recent High Court Case decision, this article seeks to explore whether there is justice in the provision of healthcare services, specifically within the private sector in South Africa. (shrink)

To what extent does payment method (managed care vs. out of pocket) influence the likelihood that an independent practitioner will assign a Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 1994) diagnosis to a client? When a practitioner does diagnose, how does payment method influence the specific choice of a diagnostic category? Independent practitioners responded to a vignette describing a fictitious client with symptoms of depression or anxiety. In half of the vignettes, the fictitious client intended to (...) pay via managed care; in the other half, the fictitious client intended to pay out of pocket. Payment method had a very significant impact on diagnosis such that relative to out-of-pocket clients, managed care clients were much more likely to receive diagnoses and more likely to receive adjustment disorder diagnoses in particular. We discuss implications involving informed consent and other ethical issues. (shrink)

BackgroundIn the context of limited health care budgets in countries where Neglected Tropical Diseases (NTDs) are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost‐effectiveness analyses may lead to biased and insufficiently justified priorities.ObjectivesThe objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi‐criteria decision‐making matrix, and 3) discuss (...) the conditions under which this decision‐making procedure should be carried out in a real‐world decision‐making context.MethodsThis paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi‐criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases.DiscussionOur in vitro multi‐criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil‐transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision‐making process and we stress the limitations of this study exercise.ConclusionBy exploring how several criteria relevant to the multi‐facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

Objective: To examine current research payment practices and to inform development of clearer guidelines for researchers and ethics committees.Design: Exploratory email based questionnaire study of current research participant reimbursement practices. A diverse sample of organisations and individuals were targeted.Setting: Australia.Participants: Contacts in 84 key research organisations and select electronic listservers across Australia. A total of 100 completed questionnaires were received with representations from a variety of research areas .Main measurements: Open-ended and fixed alternative questions about type of research agency; type (...) of research; type of population under study; whether payment is standard; amounts and mechanisms of payment; factors taken into account when deciding on payment practices; and whether payment policies exist.Results: Reimbursement practice is highly variable. Where it occurs it is largely monetary and is for time and out-of-pocket expenses. Ethics committees were reported to be often involved in decision making around reimbursement.Conclusions: Research subject payment practices vary in Australia. Researchers who do provide payments to research participants generally do so without written policy and procedures. Ethics committees have an important role in developing guidelines in this area. Specific guidelines are needed considering existing local policies and procedures; payment models and their application in diverse settings; case study examples of types and levels of reimbursement; applied definitions of incentive and inducement; and the rationale for diverse payment practices in different settings. (shrink)

Previous research (Kielbasa, Pomerantz, Krohn, & Sullivan, 2004; Pomerantz & Segrist, 2006) indicates that when psychologists consider a client with symptoms of depression or anxiety, payment method significantly influences diagnostic decisions. This study extends the scope of the previous research to consider clients with symptoms of social phobia and attention deficit hyperactivity disorder (ADHD). Psychologists in independent practice responded to vignettes of clients whose descriptions deliberately included subclinical impairment. Half of the participants were told that the clients would pay via (...) managed care; the other half were told that the clients would pay out-of-pocket. Confirming previous studies, payment method had a highly significant impact on diagnosis such that compared to out-of-pocket clients, managed care clients were much more likely to be assigned Diagnostic and Statistical Manual of Mental Disorders (4th ed. [DSM-IV]; American Psychiatric Association, 1994) diagnoses. Ethical implications relate to informed consent, accuracy and truthfulness in diagnosis, and psychologists' integrity. (shrink)

The U.S. health care system is ostensibly market based and therefore at least partially reliant on competition and consumer demand to regulate costs. Yet information about an essential feature of market transactions—costs—is typically obscure to patients until long after treatment. When discussing what must be disclosed for informed consent, the same list of required information is often mentioned regardless of the health care system in question, and information about costs rarely merits a place within this list. However, our assumptions about (...) what a moral principle requires need to be responsive to the realities of the health care system in which the principle is applied.This paper explores the moral foundations of disclosure and informed consent to argue that, in a market‐based system of the sort found in the United States, these same considerations support a requirement to disclose out‐of‐pocket costs before patients receive care. Next, I consider two objections to this view: first, that health care practitioners should focus solely on medical considerations in their encounters with patients and, second, that disclosing out‐of‐pocket costs would be too difficult to be mandated. I argue that medical and financial interests are inseparable within the U.S. health care system. If the difficulties in disclosing costs are deemed insurmountable, then the current system may prove unsustainable, both morally and financially, since we face the same practical impediments to implementing any meaningful consumer‐driven, market‐based health care reform. Finally, I explore some of the consequences of failing to disclose costs. The requirements of disclosing costs can be supported by the principle of respect for autonomy, regardless of the consequences, but in light of the consequences of the decision of whether to disclose, a concern about justice provides further support. (shrink)

Imagine a drug—let's call it Curebitt—that is safe, cheap, and very effective: take a pill once a day and you will be healthier. Curebitt's taste is so unpleasant, so bitter, however, that a significant proportion of patients cannot bring themselves to ingest the pill regularly. Now suppose that after some time, another drug, Curesweet, hits the market. This drug is clinically equivalent to Curebitt and costs the same, but it is much more palatable, so adherence rates for it are significantly (...) higher than for Curebitt. Should physicians continue prescribing Curebitt, now that Curesweet is available? No, prescribing the bitter pill puts patients at a greater risk of nonadherence and ultimately results in reduced clinical benefit for a significant proportion of patients, whereas prescribing Curesweet benefits more patients and increases the probability that any given patient's health will improve. The Curebitt versus Curesweet scenario draws our attention to how a physician can fail her patients by prescribing drugs with lower adherence rates when equivalent drugs with higher adherence rates are available. What does this fictional case tell us about the real world? A lot. We know that adherence rates vary with out‐of‐pocket costs. Name‐brand drugs carry higher out‐of‐pocket costs than their generic counterparts; as a result, when name‐brand drugs are prescribed rather than their generic counterparts, fewer patients receive health benefits. If prescribing Curebitt is unethical, then so is prescribing the name‐brand drug. (shrink)

In November 2008 Professor Mike Richards issued his much awaited review of the British Department of Health's policy on out-of-pocket payments for drugs not approved as cost effective by the National Institute for Health and Clinical Excellence. The policy stated, or had been construed as stating, that those who top up thereby became ineligible for further National Health Service treatment for the condition targeted by the drug. For instance, if a lung cancer sufferer bought Avastin, which is not NICE (...) approved, she could no longer receive free treatment for her cancer on the NHS's tab. Richards, the National Cancer Director, recommended that the policy be repealed. From an ethical point of view, this change should be enthusiastically welcomed. (shrink)

Craig, Barry M Today's gospel reading includes one of the eleven parables unique to Luke; it is also one of the most well known, and is often said to be misnamed in its common designation as the Prodigal Son. Many parables are similarly named in ways that appear to miss the point of their telling, but this tendency actually points to how we engage with all stories, and the power of Christ's storytelling. We need to realise that the mind does (...) not distinguish between reality and fiction, for all viewing and understanding of the world takes place in our heads. Thus we respond emotionally and even physically in the same way to what we see unfolding, be it real-time events in the world or depicted events, historical or fictional, as mediated by actors and machinery at the movies. In the same way, we do not distinguish between reports of actual happenings and fictional stories. Should there be any doubt about this, ask yourself: Have I ever cried at a movie, or laughed, or grown angry, or felt anything, or ducked, jumped or reacted in any way at all? At a recent viewing of Les Miserables someone at the end of the row was overcome with uncontrollable sobbing as the movie drew to an end. This distraction provided suitable cover for not a few people to sneak hankies out of pockets and return them before lights returned. If we did not respond to movies there would be no point in seeing them. Similarly with novels. They are also fodder for our imaginations, where we in a sense try on the experiences of others, imaginatively inhabiting the bodies and feelings of others. This is the basis of empathy, and the source of the power of storytelling. (shrink)

Hauser argues that his pocket calculator (Cal) has certain arithmetical abilities: it seems Cal calculates. That calculating is thinking seems equally untendentious. Yet these two claims together provide premises for a seemingly valid syllogism whose conclusion - Cal thinks - most would deny. He considers several ways to avoid this conclusion, and finds them mostly wanting. Either we ourselves can't be said to think or calculate if our calculation-like performances are judged by the standards proposed to rule out Cal; (...) or the standards- e.g., autonomy and self-consciousness- make it impossible to verify whether anything or anyone (save oneself) meets them. While appeals to the intentionality of thought or the unity of minds provide more credible lines of resistance, available accounts of intentionality and mental unity are insufficiently clear and warranted to provide very substantial arguments against Cal's title to be called a thinking thing. Indeed, considerations favoring granting that title are more formidable than is generally appreciated. Rapaport's comments suggest that, on a strong view of thinking, mere calculating is not thinking (and pocket calculators don't think), but on a weak, but unexciting, sense of thinking, pocket calculators do think. He closes with some observations on the implications of this conclusion. (shrink)

Background Patients with unmet medical needs sometimes resort to non-standard treatment options, including the use of unapproved, investigational drugs in the context of clinical trials, compassionate use or named-patient programs. The views and experiences of patients with unmet medical needs regarding unapproved, investigational drugs have not yet been examined empirically. Methods In this qualitative study, exploratory interviews and focus groups were held with patients with chronic or life-threatening diseases, about topics related to non-standard treatment options, such as the search for (...) non-standard treatment options, patients’ views of the moral obligations of doctors, and the conditions under which they would or would not wish to use non-standard treatment options, including expanded access to unapproved, investigational drugs. Results Respondents had very little knowledge about and/or experience with existing opportunities for expanded access to investigational drugs, although some respondents were actively looking for non-standard treatment options. They had high expectations of their treating physicians, assuming them to be aware of non-standard treatment options, including clinical trials elsewhere and expanded access programs, and assuming that they would inform their patients about such options. Respondents carefully weighed the risks and potential benefits of pursuing expanded access, citing concerns related to the scientific evidence of the safety and efficacy of the drug, side effects, drug-drug interactions, and the maintaining of good quality of life. Respondents stressed the importance of education and assertiveness to obtain access to good-quality health care, and were willing to pay out of pocket for investigational drugs. Patients expressed concerns about equal access to new and/or non-standard treatment options. Conclusion When the end of a standard treatment trajectory comes into view, patients may prefer that treating physicians discuss non-standard treatment options with them, including opportunities for expanded access to unapproved, investigational drugs. Although our respondents had varying levels of understanding of expanded access programs, they seemed capable of making well-considered choices with regard to non-standard treatment options and had realistic expectations with regard to the safety and efficacy of such options. Dutch patients might be less likely to fall prey to false hope than often presumed. (shrink)

Electroencephalography (EEG) neurofeedback is a type of biofeedback that purportedly teaches users how to control their brainwaves. Although neurofeedback is currently offered by thousands of providers worldwide, its provision is contested, as its effectiveness beyond a placebo effect is unproven. While scholars have voiced numerous ethical concerns about neurofeedback—regarding opportunity cost, physical and psychological harms, financial cost, and informed consent—to date these concerns have remained theoretical. This pilot study aimed to provide insights on whether these issues were supported by empirical (...) data from the experiences of neurofeedback users. Semi-structured telephone interviews were conducted with individuals who had used EEG neurofeedback for themselves and/or for a child. The majority of respondents (N = 36) were female (75%), white (92%), and of higher socioeconomic status relative to the U.S. population. Among adult users (n = 33), most (78.8%) resorted to neurofeedback after having tried other therapies, and were satisfied with the treatment (81.8%). The majority paid for neurofeedback out-of-pocket (72.7%) and considered it to be good value for money (84.8%). More than half (57.6%) considered neurofeedback to be a scientifically well-established therapy. However, of those, 78.9% were using neurofeedback for indications not adequately supported by scientific evidence. Concerns regarding opportunity cost, physical and psychological harms, and financial cost are not substantiated by our findings. Our results partially support concerns regarding insufficient understanding of limitations. This study underlines the disconnect between some of the theoretical concerns raised by scholars regarding the use of non-validated therapies and the lived experiences of users. (shrink)

Physician-based transparency approaches have been advanced as a strategy for informing patients of the likely financial consequences of using services. The structure of health care pricing and insurance coverage, and the low uptake of existing tools, suggest these approaches are likely to be unwieldy and unsuccessful. They may also generate new ethical challenges.

BackgroundUndocumented immigrants can donate their organs, but lack access to organ transplantation. This challenges foundational principles of organ donation: fairness and informed consent. Little is known about undocumented immigrants’ knowledge of barriers to their access to organ transplantation or how this might affect their decision to donate their organs.MethodsThe study was performed in an urban, university-affiliated, safety-net hospital. We interviewed hospitalized patients who selfidentified as undocumented immigrants and were unaware of having any contraindication to organ donation (for example, cancer). We (...) first recorded their demographic characteristics and knowledge and attitudes regarding organ donation. We then assessed the effects of informing participants about limits to their access to organ transplants on their willingness to donate.ResultsThis group of 59 uninsured Hispanic immigrants had adequate knowledge about organ donation. Participants were suspicious about inequality within the medical system, but most were willing to donate their organs (74 percent). Most participants (74 percent) were aware that they would have to pay to receive an organ, but they dramatically underestimated the out-of-pocket expenses. Yet willingness to donate their organs was unaffected by participants being explicitly informed of the low likelihood that they would be able to afford to receive an organ transplant.ConclusionsDespite being well informed about the organ donation system, undocumented Hispanic immigrants underestimate the costs and overestimate their likelihood of receiving an organ. Even when they are given this information, they remain willing to donate their own organs. (shrink)

Those who advocate higher out-of-pocket spending, especially high deductibles, to keep health care costs better controlled without losing quality use market language to talk about how people should think about health care. Consumers—that is, patients—should hunt for bargains. Clip coupons. Shop around. Patients need to have more “skin in the game.” Consumer-patients will then choose more carefully and prudently and use less unnecessary health care. Unfailingly, “skin” refers to having money at stake. Usually, those arguing for high deductibles express (...) dismay or frustration that patients do not face the full cost of the health services they receive. Unfortunately, a lack of price transparency, the need to unbundle bundled groups of services to discover total price, and the challenge of validly and reliably measuring and disclosing quality make shopping for health care a challenge for even the savviest patient. Urgency, fear, and sickness that impairs peak cognitive function and other aspects of emotionally laden decision-making, even when “shared” with a physician, add obstacles to coupon clipping and tire kicking. Who has more at stake in health decisions than patients? Whose flesh is literally, not just figuratively, at risk? (shrink)

For generations following the first American Medical Association Code of Ethics in 1847, the relationship between doctors and advertising remained unambiguous—advertising was forbidden. In 1975, however, the Federal Trade Commission accused the profession of “restraint of trade” and legally persuaded doctors to permit advertising amongst their clan. As the 1970s witnessed the relentless burgeoning of healthcare expenditure, physicians accepted the blame for immuring themselves from the natural forces of economics. American physicians were bullied to embrace advertising under the delusion that (...) doctoring—like any trade—would become better and cheaper if incited by competition. Today most American physicians engage in some form of paid advertising, yet it is doubtful that physician advertising has either augmented the quality or diminished the cost of health care. Advertisement has eroded medical professionalism by denying doctors the right to enforce ethical boundaries between themselves and the “let the buyer beware” world of business. And more is at stake than professional status, for the doctor/patient relationship, the cornerstone of medicine, is endangered as physicians continue to cast forth the self interested lure of advertisement.To assume that for over 130 years physicians anathematised advertising for purely ethical reasons would be naive. Sociologist Paul Starr explains that in the early 19th century, no group “embraced the ways of the market as actively as did popularisers, alternative healers, and quacks”.1 Advertisement was perhaps the most successful implement of empirical medicine. So it is no surprise that professional licensed doctors in America grew up with a “distaste and discomfort for advertising”.2 Medical advertisements were especially potent in the self reliant Jacksonian era, which touted health as a do it yourself venture commodified into tonics and one time procedures. To distinguish themselves from the circus of healthcare providers, physicians not only instituted higher educational standards and licensure …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Noble Impermanence of WaystationsMiriam Rowntree (bio)In the Austin-Bergstrom International Airport (ABIA), adjacent to Gate 14, a screen announces that boarding to Equestria is on time. The description below this announcement includes transport “through a portal to a parallel dimension” and a “harmonious sparkly” atmosphere. An attractive destination. Esquestria’s capital, Canterlot, offers castles, dragons, and, of course, ponies. As the heart of the My Little Pony universe, Canterlot boasts (...) a fantastical utopia. Gate ∞, as it is called (because its erstwhile home, Gate 13, is an unlucky number), imaginatively whisks weary travelers away to other fantastical destinations. Using a commonplace ticket machine or kiosk, travelers answer a series of whimsical questions and receive a ticket to a utopian destination that the machine has personally matched to the traveler for their mythical utopia. Doesn’t everyone want to go to lands of unicorns, ponies, or other such magic?The installation titled “Interimaginary Departures” draws upon 120 destinations drawn from various media, literature, and games, including Harry Potter, The Chronicles of Narnia, and The Wizard of Oz.1 Even the carpet is inspired by the rabbits of Watership Down. Artist Janet Zweig describes her art [End Page 570] installation as designed to “create generative situations in public settings” and Gate ∞ does invite possibility as it is situated in a portal askew to the portals of the real in the terminal. Gate ∞ boldly crosses a border wall at 7 degrees (fig. 1, p. 572), heightening the boundaries between the real and the unreal. The chairs, a trashcan, and a book are caught between worlds, a wall slicing through them. Although Zweig cites China Mieville’s The City and the City (2009) as inspiration for her art installation, for me, the juxtaposition of the “interimaginary” and the real calls to mind Olga Tokarczuk’s book Flights (2007).2 While Zweig’s kiosk personally recommends Equestria (fig. 2, p. 573), ABIA is itself merely a waystation on my own trip between Texas and Rome.Tom McAllister’s review of Flights in the Washington Post describes the book as “beautifully fragmented,” not unlike Zweig’s “Interimaginary Departures” which relies on structural fragmentation of a space to exemplify the interposition of the imaginary and the real.3 This book captivated me from the first strange narrative when I tried to read it several years ago. However, I found it difficult to finish the first time as the stories in each section (there are no chapters) moved rapidly from one place, person, idea, and time to the next. McAllister says that “the disconnectedness is part of the point; they are fragments of people’s lives, a patchwork of personal experience, secondhand observation and imagination. Each story appears, draws our attention and then fades as the narrator finds her way to a new hotel, a new airport.” Perhaps the disconnectedness is the point, but I have found that Tokarczuk also infuses the sections with a sense that “there exists in the world’s coordinate system a perfect point where time and space reach an agreement” (4). Like Zweig’s “Interimaginary Departures,” that agreement is found in movement and the waystations toward that right time and place.Destination: RomeI settle into my seat next to my two daughters. Our flight will land in Rome at 8:00 am tomorrow. I have prepared them for what this means for our bodies. Jet lag is no joke. We shuffle our things around, air pods in the seat pocket in front of us, our bags tucked into the overhead bins. I take out my book and open it to the first page as my girls turn on the tv screens nestled in the seat in front of them. “Here I am” it says in bold letters at the top of the first page of Tokarczuk’s book. The narrator announces their presence (here) with the imperative of existence (I am). I take out my pen as is my habit, but it falls to the side as I read the first [End Page 571] Click for larger view View full resolutionFigure 1.A view from the Interimaginary Departures exhibit at Gate 13, or Gate Infinity, in Austin-Bergstrom International... (shrink)

Individual health assessments (IHAs) for asymptomatic individuals provide a challenge to traditional distinctions between patient care and non-medical practice. They may involve undue radiation exposure, lead to false positives, and involve high out-of-pocket costs for recipients. A recent paper (Journal of the American College of Radiology 13(12): 1447–1457.e1, 2016) has criticised the use of IHAs and argued that recipients should be classified as ‘presenters’, not ‘patients’, to distinguish it from regular medical care. I critique this classificatory move, on two (...) grounds: one, it is conceptually suspect. Two, it obviates the medical ethics framework for IHAs, potentially exposing recipients of IHAs to lower standards of oversight and protection. Responsible regulation of IHAs will be easier to ethically justify if those seeking IHAs are considered patients and not merely presenters. (shrink)

The authors co-organized (Snyder and Crooks) and gave a keynote presentation at (Turner) a conference on ethical issues in medical tourism. Medical tourism involves travel across international borders with the intention of receiving medical care. This care is typically paid for out-of-pocket and is motivated by an interest in cost savings and/or avoiding wait times for care in the patient’s home country. This practice raises numerous ethical concerns, including potentially exacerbating health inequities in destination and source countries and disrupting (...) continuity of care for patients. In this report, we synthesize conference presentations and present three lessons from the conference: 1) Medical tourism research has the potential for cross- or inter-disciplinarity but must bridge the gap between researchers trained in ethical theory and scholars unfamiliar with normative frameworks; 2) Medical tourism research must engage with empirical research from a variety of disciplines; and 3) Ethical analyses of medical tourism must incorporate both individual and population-level perspectives. While these lessons are presented in the context of research on medical tourism, we argue that they are applicable in other areas of research where global practices, such as human subject research and health worker migration, are occurring in the face of limited regulatory oversight. (shrink)

Background When anti-cancer treatments have been given market authorization, but are not (yet) reimbursed within a healthcare system, physicians are confronted with ethical dilemmas. Arranging access through other channels, e.g., hospital budgets or out-of-pocket payments by patients, may benefit patients, but leads to unequal access. Until now, little is known about the perspectives of physicians on access to non-reimbursed treatments. This interview study maps the experiences and moral views of Dutch oncologists and hematologists.Methods A diverse sample of oncologists and (...) hematologists (n = 22) were interviewed. Interviews were analyzed thematically using Nvivo 12 qualitative data software.Results This study reveals stark differences between physicians’ experiences and moral views on access to anti-cancer treatments that are not (yet) reimbursed: some physicians try to arrange other ways of access and some physicians do not. Some physicians inform patients about anti-cancer treatments that are not yet reimbursed, while others wait for reimbursement. Some physicians have principled moral objections to out-of-pocket payment, while others do not.Conclusion Oncologists and hematologists in the Netherlands differ greatly in their perspectives on access to expensive anti-cancer treatments that are not (yet) reimbursed. As a result, they may act differently when confronted with dilemmas in the consultation room. Physicians working in different healthcare systems may face similar dilemmas. (shrink)

continent. 2.1 (2012): 22–28. Jeroen Mettes burst onto the Dutch poetry scene twice. First, in 2005, when he became a strong presence on the nascent Dutch poetry blogosphere overnight as he embarked on his critical project Dichtersalfabet (Poet’s Alphabet). And again in 2011, when to great critical acclaim (and some bafflement) his complete writings were published – almost five years after his far too early death. 2005 was the year in which Dutch poetry blogging exploded. That year saw the foundation (...) of the influential, polemical, and populistically inclined weblog De Contrabas (The Double Bass), which became a strong force for internet poetry in Dutch in the years to follow. In the summer of that year, a lively debate raged in the aftermath of Bas Belleman’s article “ Doet poëzie er nu eindelijk toe ?” (“Does poetry finally matter now?”), on a blog specifically devoted to this question. Up to that point, the poetical debate in the Netherlands had largely been confined to literary reviews (which were often subsidized), having become mostly marginalized in more mainstream media, where poetry could be covered by only a small number of so-called authorities. As a result, literary debate had acquired a rather placid quality. Though a variety of camps with different aesthetics could be discerned, most poetical positions shared a general acceptance of poetry as a form of art somewhat apart from fundamental political concerns. Late modernists would pursue subtlety and density of reference. Others would insist poetry was best understood as a form of entertainment that should ideally be accessible and work well on the stage. Still others would insist that poetry is mostly a play with forms. Linguistically disruptive strategies were valued highly by some, but mostly for their aesthetic effect. Values of disinterested playfulness reigned supreme everywhere. Any idea that poetry could be a field in which one confronts politics and the world was decidedly marginal. This led to a climate in which most attempts at polemics were DOA, often based on far too superficial positioning and analysis. The greatest polemical debates were revolving around the question of whether poetry should be difficult or easy, with both camps defining their ideas of difficulty and accessibility in ways that were so utterly shallow as to make the entire point moot. Debates were performed, rather than engaged with. It was a postmodern hell of underarticulated poetics. Half-consciously, people were yearning for new forms of criticism that could put the oomph back into poetry. Weblogs provided for ways to explore debate directly outside of the clotted older channels of the reviews and the newspapers. Belleman’s essay and the resulting online activity had shown that there was a widespread eagerness to take poetry more seriously as a social art form. It was in this environment that Mettes started his remarkable project Dichtersalfabet . At that moment, Mettes was active mostly in academic circles, having become noted at Leiden University as a particularly gifted student of literary theory. Within the Netherlands, the field of literary theory has a very odd relationship to literature as it is practiced in the country. Academic theory tends to have a mostly international view and engage with international debates of cultural criticism, literary theory, and philosophy, with academics often publishing in English and attending conferences around the world. Literature itself however is much more concerned with domestic traditions. Consequently, in the Netherlands, there exists a language gap between academic theoretical practice (as it is studied in the literary theory departments) and literary practice (which, academically, gets studied in specialized departments of Dutch literature). The Dichtersalfabet can be seen as Mettes’s attempt to close this gap. It is also an attempt to bridge the divide between theory and practice, in which he could apply his theoretical knowledge in a very unorthodox and unacademic critical mode that moreover could reach far beyond the domain of conventional criticism. Mettes’s goal was to trace a diagonal through Dutch poetic culture, to “strangle” what he perceived to be its dominant oppressive traditions of agreeable irrelevance, in order to see whatever might be able to survive his critical assaults. But he could only do so by means of a very serious engagement with poetry itself. To this end, he would go systematically through the poetry bookshelf of the Verwijs bookshop (part of a mainstream chain of booksellers) in The Hague, buying one publication per blog item, starting from A and working his way through the alphabet, reading whatever he might encounter that way in the restaurant of the HEMA store (another big commercial chain in the country). He would subsequently write down his reading experiences, refraining however from trying to write a nuanced book review. Rather, he would write about anything that caught his attention and sparked his critical interest. This way of working would yield vast, at times somewhat rambling, dense, lively, and generally brilliant essays, in which he held no punches. He never hesitated to pull out his entire arsenal of concepts from the international theory traditions, while never degenerating into mere academic exercise and pointless intertextualities. The attempt was rather to live the poetry that he read, and to engage it with the full range of political, academic, cultural, and personal references that he had at his disposal—all that composed the individual named Jeroen Mettes as a reader. Often what he wrote would not be according to the standards of what we usually think of as a critical review of a book of poetry. Sometimes he would even be a little sloppy in his judgments of poets or representations of the books he read, for example by basing an entire essay on the blurb of a book rather than its poetry content. But what he did was always brilliant writing nonetheless—virtuoso riffs on poetic fragments randomly found within capitalist society, exposing an incisive and insistent poetical sensibility. Mettes read poetry for political reasons, to see whether poetry could offer him a way to deal with a political world he detested. The right-wing horrors of the Bush years, the Iraq war, and the turn of Dutch public opinion towards ever more conservative, narrow-minded, and xenophobic views alongside a complete failure of the political left to present any credible alternative, were weighing heavily on the times in which Mettes reported on his reading. Poetry was to measure this world, diagram it, to lay bare its inconsistencies and faults, to indicate where lines of flight might be found. Amid the ruins of a world wrecked by imperialist policies, corporate capitalism, and doctrinal neoliberalism it would have to show the possibility of a new community. And it was, through its rhythmical workings, to release the reading subject from his confinement to ideologically conditioned individuality and lead him into the immanent paradise of reading. The stakes were high. Much higher than anything Dutch poetry had seen for many years. Mettes’s blog was widely read from the start. His posts sparked lively debates. Some of these subsequently led to the publication of extensive essays on a few key poets in some literary journals, particularly Parmentier and the Flemish journal yang , for which Mettes would become a member of the editorial board, a few months after starting the Dichtersalfabet . This could have been the start of a brilliant career, but this was not to be. The initial manic energy that fueled the blog gradually subsided. The Alfabet was updated less and less regularly. Mettes sometimes just disappeared for many weeks, then suddenly returning with a brilliant essay. Until, on September 21, 2006, he posted his final blogpost, consisting of no text whatsoever. That night I learned from his mentor at Leiden University that he had committed suicide. Mettes and I had had some fruitful exchanges on poetry, rhythm, music, and form, mostly on the blogs, but also by email. Three weeks before his death was the last time I heard from him: a very sudden, uncharacteristically curt note saying “My old new sentence epic.” Attached to that message I found a DOC-file of a work so major that I felt intimidated. This was N30 , a text he had been working on for over five years. After his death, it took me a long time before I dared to read it in its entirety. In the meantime, the work of preparing the manuscript for publication was entrusted by his relatives to his colleagues at yang magazine. It took them a few years to brush up the text and to edit the Dichtersalfabet -blog (which, apart from the Alphabet project itself, incorporated many other fragments of political, polemical, and theoretical writing) into book form along with the essays. The result of this labor was finally published in 2011 as a two-book set, and Mettes burst onto the Dutch poetry scene for the second time. The work was widely reviewed, on blogs, in journals, magazines, and newspapers. Many critics who had not followed the blogs in 2005 showed themselves surprised, baffled even, by the intensity of Mettes’s critical writing. But for those who had read the blog, the main surprise was in the poetry. During Mettes’s lifetime, some of his poems had already been published in Parmentier . Although these were strong texts by themselves, in no way did they prepare readers for N30 . Nothing like it had been written in Dutch before. Instead, N30 explicitly follows the American tradition of Language Writing, directly referencing Ron Silliman and his concept of The New Sentence. However, it would seem that much of the poetical thinking around his use of this technique puts him closer to a writer such as Bruce Andrews. For Mettes, using non sequiturs as a unit of poetic construction was not only a way of reinventing formal textual construction, but it was another way of finding the fault lines in the social fabric. From the perspective of the Language tradition, one may put N30 somewhere between Silliman and Andrews. N30 shares an autobiographical element with Silliman’s New Sentence projects, and as in Andrews, there is a concern for mapping out social totality within text—what Mettes refers to as a “textual world civil war.” Again this shows a formal textual strategy for allowing the person “Jeroen Mettes” to be absorbed by the world, which here appears as a whirlwind of demotic and demonic chatter, full of violence, humor, intensity, beauty, disgust, sex, commerce, and strife. Influenced as it may by American precursors, Mettes’s tone and form end up quite different from his American counterparts, consistently referencing a world that is Dutch, all too Dutch, taking on the oppressive orderliness of Dutch society with its endemic penchant for consensus by introducing chaos into its daily life and laying bare its implicit aggressions. The work’s 31 chapters each have a different feel and rhythmical outline, but none of them follow a predetermined pattern. Rather, Mettes would consistently edit and reedit the text, randomly rewriting parts of it, as he explains in his poetical creed Politieke Poëzie (Political Poetry). N30 – referring to the 1999 antiglobalist protest in Seattle – was to be the first text of a trilogy. The work itself was written “in the mode of the present.” A second text was to be written in the mode of the future, and a third one, in the mode of the past, was going to be an epic poem about the Paris Commune, and to form an alternative poetic constitution for the European project. I still deeply regret that Jeroen Mettes never got to complete those projects, just as I would be very keen on knowing what he might have had to say about more recent political developments. Instead, in 2006, he remained stuck in the horrors of the present, that ended up consuming him completely. He left Dutch literature with some of its most piercing criticism and its most profoundly moving, exciting and powerful poetry. Excerpts from N30 Translated by Vincent W.J. van Gerven Oei from Jeroen Mettes. "N30." In N30+ . Amsterdam: De wereldbibliotheek, 2011. Published with permission of Uitgeverij Wereldbibliotheek, Amsterdam. Chapter 1 1999. A day is a space too. And another man, who had chained himself, had his ribs crushed, and a motor has driven over somebody’s legs. Dutch health care system spends ±145 million guilders per year on worriers. A spiderweb vibrates as I pass by. Randstad renovating. She slaps her bag against her ass: “Hurry up!” OPINION IS TRUE FRIENDSHIP Your skin. It doesn’t express anything. “But the use of the sword, that’s what I learned, and you’ll need nothing more for the moment.” Just try to interrogate a guy like that. Gullit in Sierra Leone. Codes silently lying all around. But that’s simply what belongs to “that it’s just allowed”: that sigh of “world” (a word expressing that the trees are now standing along the water like black men with white bags in their hair); that’s nothing else right? And you see how everything has to move, and first of all what cannot do so. Without Elysium and without savings, barbarians lashing out, horny for an enemy, staring across the water, staring into the air—staring to get out of it. “You’ve never showed me more than the mall,” she said. All those “dreams” in the end—and now? It was lying on the stairway, so I picked it up and took it upstairs. Chapter 3 “You know what?” Telecommunication. For love… I don’t really like that cheap cultural pessimism, but… The holy city is on pilgrimage in the earthly bodies of the faithful until the time of the heavenly kingdom has come. The end of an exhausting autumn day behind the computer, my eyes filled with tears of fatigue. KITCHEN / INSTALLATION / SPECIALIST. Network integration. In the sun, stretched out on a sheet. (…) I don’t believe what I’m reading, because I want to believe something else. An illusion? Suits me. There’s a variety of shapes and tastes… “So what?” you may think. 102 dalmatians can’t be wrong. But I want more, dear… A feel good movie. I’m smashing the burned body. So what? We continue to save the European civilization. What’s there to win? Plato with poets = Stalin without gulag? Ball against the crossbar. No wonder. She comes straight to her point. She’s standing in the kitchen eating an apple. (…) The godless Napoleon had used her as a stable and wanted to have her taken down. “Our” Rutger Hauer. Ready or not here I come. Psst… are you also wearing a string? Nobody understands our desire. Cliffs breaking the waves and shattering the sunset. I used to be a real romantic (as a poet). A typical fantasy used to be the one in which I brutally raped mother and daughter Seaver from the sitcom Growing Pains . Nevertheless you only contain bad words. Eyelashes. Automatic or manual? That your skin always in the afternoon. Integration. The air is empty. Too bad! Hand in hand on their lonely way. Alaska! Chapter 12 May 5, 2001 [10:00-10:30] A dust cloud on a hill. Globe. Indian (British) (tie) / pope. Damascus. Rape. We’re carrying the ayatollah’s portrait through the streets. At the moment the girl is mostly suede jacket with white ribbons on her sleeves. A small explosion flares up/impact. Camouflage. Close up. We’re analyzing the situation. He’s dead right? Dead dead. Dead. Everything without, these, and only with the body. Indices signal death. Dollar bills are printed in factories. Holes. Light patch. Globe in a box. Microphone. What’s the situation? Grey impact on a green hill (field?). The water is blue. He has no lips. Interns on the background with skirts that are too long. This is an example of a sonnet. An Islamic woman pushes against the door of an electronics shop. Arrows (percentages (prices)). Is this what awaits the American? Touch screen interface. The word, an island, can only be a sign in that situation. We pull up a chair, join in on the fun. On the shelves only books about computers. One glance in the distance is enough to lighten up a luna park in the distance. She’s really desperate, especially when she laughs. Click. Ah. Next. And now it’s raining, but that’s ok. Yellow stains sliding over the south. Shallow caves light: clothes, boots, electrical equipment. 45. 22:10. Nothing gives you the right to eat more than people starving to death. The Hague. Slam dunk. Traffic light. Two H’s, one L (standing for the L (little prick)). We’re happy to say something. Clouds, small suns, temperatures, cities. The truth is never an excuse. Yellow. Yellow. Green. Yellow. Yellow. Yellow. Yellow. Green. Green. Yellow. Will you email me? Skeleton: “No.” Ex-nerds in brand-new and brightly red sport cars. $$$. I love. Shihab. Hooves in the sand. Skinny senior with over-sized sunglasses; old jockey (cap, trophy) smiling in slow motion. And there I am again, flashback, crying with my head in between my hands. Sometimes I’ve got the feeling that cannibals. Eyes: blue. Cancer. Why would I wait until tomorrow? Golden beams protruding from the lifted/lit earth. May 5, 2001 [11:30-12:45] You’ll remember this for the rest of your life. Graphs, diagrams. Bu$ine$$. Blue shirt, white collar, no neck (porn star). A name lights up. I’m hysteric. Will you join us? Letters falling in their words. Fingers set up a tent and start to dance. Young entrepreneurs from poor neighborhoods (read: black) guided by Microsoft. Kinda makes me happy, that sort of kitsch. A sense of exhaustion/impotence to see anything but the present. (…) Wouldn’t you like to? Orange explosion in an industrial zone. YOU’RE DOING THIS FOR AMNESTY INTERNATIONAL. Would you. A familiar face. Clouds and blossom. Sunflowers. Supermodels. Mountainous area in a rectangle: shades of brown, from dark to beige, more green toward the south. Tents and next to them (it’s all a blur) people. Plane. Stadium. Geometrical block of people. No, I ain’t crying. I don’t speak no more. I just want. Quote + photo. (Positive:) screaming crowd. Three-piece suit, seen from the back, before entering the arena. On the back: “Daddy abused me.” Oh, bummer. State of emergency has been declared and everyone has to cooperate. She’s cut her wrists. What we do know (…) is that there’s never been a unique word, an imperative name, nor will there ever be. [Click here for work that suits you.] Barefooted children are watching it (coherent pieces revelation of what’s lying below). Who knows how she’s changed during those two years. “Everything used to be better” + sigh. And here we are. An empty field of parquet. A city lying behind it. Explosion. Blue. A rain drop falling in my coffee. May 5, 2001 [14:30-15:30] A young Arafat on video speaking with raised finger. “I’m calling from my convertible.” Names on walls, victims, numbers… Tourists. Yellow. Yellow. “Your own child! Really, what kind of human are you?” I don’t want to hear it no more. A woman jumping out of the water in a yellow bikini against a background of fireworks and the Cheops pyramid. Thy sorrow shall become good fortune, thy complaints laudation. All planets will float and wander. Wo die Welt zum Bild wird, kommt das System (…) zur Herrschaft. It is something, but is it? May 5, 2001 [18:30-19:00] Iris. Leaves. NASDAQ. Open / and white and. For the one who’s doing nothing, just waiting. (…) NO DEFEAT is made entirely up of defeat -- since / the world it opens is always a place / formerly / unsuspected. October 2002. “Jeroen, I’m leaving for the cemetery, byeeee.” The rise of the middle class. My entire oeuvre is an ode to the. My entire head is a fight against the. God always demands what you cannot sacrifice. You may take that the easy way, but… “The state hasn’t made us, but we make the state” (Hitler). A stork exits the elevator. Skeletons of. Moscow. Helsinki. Palermo. Paris. Chapter 30 Like your paradises: nothing. United Desire, as only remaining superpower. And even though the sea is now calmer and the wind is blowing pleasantly in my face… Heart! Who determines whether a tradition is “alive”? The yellow leaf or the white branch? Mars. This sentence is a typical example. Most Dutch people are happy. No consolation. When I see a girl sitting at a table with a book, a notepad, a pen, a bottle of mineral water, her hand writing in the light—then I consider that one thing. “Presents,” “poetry,” “classics.” We are what we cannot make from ourselves. “Left”: mendicant orders, missionaries. Saint-Just: “A republic is founded on the destruction of its enemies.” She crosses the street with a banana peel between her fingers. (…) We chose our own wardens, torturers, it was us who called all this insanity upon ourselves, we created this nightmare… But “no”? Girl (just like a beach ball) talking rapid Spanish (Portuguese?) in a mobile phone. Do I have a chance now that her boyfriend is getting bold? CLIO, horny bitch. What else do you want? An old woman, between the doors of the C1000, is suddenly unable to go on; her husband stretches out his hand, speaking a few encouraging words. Selection from. Der Führer schenkt den Jüden ein Stadt. How can it reach us if we haven’t been already reached somehow? It doesn’t “speak.” No problem. Each word she uses is a small miracle, as if she doesn’t belong to it, to language, but wanders around with a pocket light looking for the exit; she’s never desperate (maybe a little nervous), lighting up heavy words from the inside. But indeed, we’re free. But the predicate is not an attribute, but an event, and the subject is not a subject, but a shell. That’s why also samurai, knights, and warriors raised the blossom as emblem: they knew how to die. Locked up in a baby carriage with a McDonald’s balloon. Blue helicopter, the blue sky. Whether you want to refer? The point is. How / Motherfucker can I sing a sad song / When I remember Zion? You’ll feel so miserable and worthless that you think: “If only I were dead!,” or: “Just put an end to it!” “So you’re an economist?” Her card—two little birds building a nest, her handwriting shaking—is still on the mantelpiece. Guevara: “No, a communist.” A straw fire, such was our life: rapidly it flared up, rapidly it passed. I’m fleeing, coming from nowhere. (…) Eazy-E drinking coffee with the American president. If I’d scream, would that be an event? Drown it: the cleaner it will rise up from the depths. No! The night, so fast… As if there’s something opened up in that face. Come on, we may not curse life. He shows me his methadone: “If you drink that all at once, you’ll die instantly.” The last one dictates how we should behave to deserve happiness. One shine / above the earth. “I want to go to Bosnia,” I said bluntly. I don’t even know the name of the current mayor. Let’s despise our success! “There is no future; this is the future. Hope is a weakness that we've overcome. We have found happiness!” Sun. Sushi. Volvo. I feel like a bomb about to explode at any moment. Makes a difference for the reconstruction right? The decor moves forward. Daughter of Nereus, you nymphs of the sea, and you Thetis, you should have kept his tired head above the waves! Alas! This sentence has been written wearing a green cap. I receive my orders from the future. A frog jumps into it. Her husband has turned the Intifada, which he follows daily on CCN, into his hobby, “to forget that he doesn’t have his driver’s license yet." Suddenly the sun slides over the crosswalk. Her (his?) foot is playing with the slipper under the table. Is this how I’m writing this book now? I’m not a fellow man. I hate you and I want to hurt you. These are my people. Their screaming doesn’t rise above the constantly wailing sirens which we've learned to ignore. My whole body became warm and suddenly started to tremble. Unfortunate is he who is standing on the threshold of the most beautiful time, but awaits a better one. Arafat’s “removal” is contrary to American interests. Jeep drives into boy. What you can do alone, you should do alone. A food gift from the people of the United States of America. Two seagulls. [...]. (shrink)

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