bluuebunny/crossref_metadata_2025_split huggingface dataset:
Avoiding a “Death Panel” Redux
Authors: Piemonte Nicole M. , Hermer Laura 
Published: October 2014

AbstractIf engaging in end of life conversations and advance care planning not only is desired by many Americans but also might significantly improve patient care at the end of life, then why was a provision that provided reimbursement for physicians to engage in end of life planning through Medicare removed from legislation? If, as some researchers have suggested, reimbursements under Medicare “would have been a start” for encouraging these conversations, then why was the Advance Care Planning Consultation provision in the 2008 health reform effort so vehemently opposed by politicians and citizens alike? The heated and misleading rhetoric employed against the ACPC undoubtedly contributed to intractable polarization surrounding this portion of the health reform bill and assured its failure. But the ACPC's emphasis on “checklists” and regulation may also have served as fodder for these fiery critiques. If that's right, legislation that focuses squarely on the broader and more fundamental goals of end of life consultations and deemphasizes administrative and documentary concerns may have a greater chance for success in years to come, as health reform is implemented and the battle over the ACPC fades from memory.
Cueing “The Conversation”
Authors: Berlinger Nancy 
Published: October 2014

AbstractIn “Avoiding a ‘Death Panel Redux,” Nicole M. Piemonte describes how she tried to fire palliative care after first refusing to let it—and any mention of death, from any source—into her dying mother's room. One way to read this is as a familiar human story about the profound difficulty of facing death, a story that, too often, is reduced to the word “denial.” But Piemonte and Hermer suggest that there is another way to read this story, in terms of the structure that was absent from the earliest conversations and relationship‐building among this patient, her daughter, and the doctors. If advance care planning had been part of the structure all along, if everyone—oncologists, patients, loved ones—talked about prognosis, preferences, benefits, burdens, and goals from the time a life‐threatening disease was diagnosed, as a normal part of good care, would Piemonte have understood her own role as caregiver and advocate differently? If, early on, her fifty‐year‐old mother had been asked, “what do you want to do with the rest of your life?” and had been assured that this question mattered and encouraged to talk about her hopes (such as attending her daughter's wedding), might her treatment and care have been organized in a different way?
A Defense of Genetic Discrimination
Authors: Levin Noah 
Published: October 2014

AbstractThe United States’ Genetic Information Nondiscrimination Act of 2008 was sweeping legislation intended to protect the privacy of genetic information and prevent discrimination based on genetic factors in health insurance and employment. It protects the genetic privacy of individuals in these contexts and limits the likelihood that genetic discrimination will occur. However, in the case of employment, it does so at the cost of safety, both to the individuals it is meant to protect and to others. On occasion, adherence to the dictates of GINA could lead to serious and avoidable harm to many people.Odd as it may seem, then, there can be such a thing as justified genetic discrimination. There are times when knowledge of genetic factors and subsequent action overrides reasons against obtaining or using such information. Moreover, this knowledge can be obtained without violating one's genetic privacyx.
Not Your Founder's Bioethics?
Authors: Lauritzen Paul 
Published: October 2014

AbstractIf you will be teaching a course in bioethics in the near future, you might want to assign the books here under review, even if you haven't yet read them. All three authors will be familiar to those working in the field of bioethics: Howard Brody (author of The Future of Bioethics) and Daniel Callahan (In Search of the Good: A Life in Bioethics) as long‐time, significant contributors to the profession, and John Evans (The History and Future of Bioethics: A Sociological View) as a sociologist outsider with a keen eye for the cultural and political currents that helped shape the field. What distinguishes these works is that all three take stock of the history of the field of bioethics and all three imagine or advocate for a particular future.
Challenging Transhumanism's Values
Authors: Green Ronald M. 
Published: October 2014

AbstractThe core issues explored by transhumanism raise profound questions about the goods and evils that define human existence and about the nature and meaning of human life. Christian faith, too, has long provided answers to questions about the directionality and meaning of human life. In a world brought into being by a loving God, what were we meant to be in our original created nature? Which features of our current experience are the result of the distortions of human sinfulness, and which remain part of our created goodness? What will life be like if our self‐created distortions are removed and our eschatological hopes of salvation are realized? In Transhumanism and Transcendence: Christian Hope in an Age of Technological Enhancement, thirteen essays by Christian theologians and ethicists indicate that there are points of convergence and divergence for Christianity and the more ambitious transhumanist visions.
Beware the Biomarkers for Criminal Behavior
Authors: Peikoff Kira 
Published: October 2014

AbstractAs functional magnetic resonance imaging becomes more precise and the data more extensive, neuroscientists like Kent Kiehl are raising the possibility that such research might someday, together with existing clinical assessment tools, increase our ability to predict the likelihood that a given convict will commit another crime after getting out of prison. Such an advance would provoke challenging questions about our notions of liberty and personal autonomy, with potentially chilling ramifications.
Two Dreams
Authors: KAEBNICK GREGORY E. 
Published: October 2014

AbstractTwo disputes are waged simultaneously in the pages of this issue of the Report, but it might be easy to lose track of the second. The obvious dispute is about resource allocation in health policy: the question is whether limited health care resources should be spent on identified victims—people whose struggles with disease have made the news—when the same investment might provide more help if spent on a larger number of unknown, merely “statistical” people. The second, less easily noticed dispute is about the challenge of crafting public policy when the arguments pro and con are not decisive.
Keeping Time
Authors: Tunzi Marc 
Published: October 2014

AbstractThat's Brandenberg Concerto #3,” the Latino teenager informed me as I entered the exam room. I have a habit of whistling around the hospital. A little Bach. A little Gershwin. Disney. The Beatles. Italian folk songs. Christmas carols in December. I mix it up. As whistlers go, I'm pretty good—maybe a seven out of ten, all around—but I'm no virtuoso. In my work as a family physician, my repertoire is also quite broad, but not endlessly deep.My Latino teenager ostensibly came in for evaluation of a “lump” that turned out to be a small lymph node. The real reason for his visit, however, was to discuss symptoms of depression and anxiety, a self‐described sense of “disassociation,” and his severely alcoholic father. “Tell the doctor why you are really here,” his mother told us both in Spanish as she exited the room. And I had fifteen minutes. With patients waiting.
Customary Standard of Care: A Challenge for Regulation and Practice
Authors: Johnson Sandra H. 
Published: October 2014

AbstractLaw wrangles with setting and applying standards for the practice of medicine in many different arenas. One of the most prominent is medical malpractice litigation in which the trial process examines a physician's performance and measures it against the standard of care. The profession's prevailing custom, with some substantial tolerance for “respectable minority” views, has been the gold standard for scrutinizing physician practice and treatment decisions in the malpractice context. Using the profession's custom as the measure against which a physician's performance is judged defers to the expertise of medicine. Deference to the medical profession is attractive as a tool for reining in law. Reliance on customary practice is criticized, however, for driving physicians to the relative safety of the middle of the herd. Creating such a strong incentive for compliance with customary practice can dampen medical innovation and the diffusion of new clinical knowledge. The safety of the herd can also deprive individual patients of the best care in their particular circumstances.Several current trends are strengthening claims that professional practice patterns are an inappropriate tool for distinguishing between high‐quality and substandard care. In particular, advocacy for evidence‐based medicine aggressively asserts that the traditional way of making medical treatment decisions is largely untethered from scientific method or data, rendering professional judgment, even in the aggregate, suspect.
How a Clinical Trial Registry Became a Symbol of Misinformation
Authors: Miller Jennifer E. 
Published: October 2014

AbstractIn 1971, President Richard Nixon declared a “war against cancer,” stating that “the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease.” Nixon signed the National Cancer Act, and shortly thereafter the first national registry listing all ongoing clinical trials for cancer therapies was published by the National Cancer Institute. The registry was proposed by Mary Lasker (“a patroness and advocate of clinical research”) to help doctors find open trials in which to enroll their patients and to help researchers maintain a steady supply of research participants. The registry appeared to be a win for doctors, patients, researchers, and pharmaceutical companies alike. However, it ended up exposing corrupt practices and tensions between ethics, the corporate need for profits, and public health goals. How did this happen?
The Effects of Sequestration on Indian Health
Authors: Malerba Marilynn 
Published: October 2014

AbstractThe budget battles have hit the Indian Health Service hard: sequestration forced a 5 percent reduction in funds, followed by an additional 0.2 percent rescission in the recently passed Consolidated and Further Continuing Appropriations Act. Exempted from sequestration (and rightly so) were other very important health care programs such as the Veterans Administration Health Programs, the State Children's Health Insurance Programs, and Medicaid. Medicare has been reduced by only 2 percent, with that cut targeted to provider reimbursement so as to avoid a reduction in service to beneficiaries. In March 2013, Representatives Betty McCollum, Tom Cole, and Michelle Lujan Grisham introduced a bill to reduce the impact of sequestration on the IHS to 2 percent (H.R. 1371). This bill was referred to the Committee on the Budget, but to date, there has been no movement on it.Why was the IHS susceptible to sequestration? Why is it considered a “discretionary” line item in the federal budget? Why is there not parity for Indians, whose health status remains far below that of mainstream America? As a matter of legal requirement, social contract, and moral obligation, the United States should fundamentally change how Indian Health is funded.
Oxygen and Estrogen
Authors: Wilfond Benjamim S. 
Published: October 2014

AbstractEvery so often, a bioethics controversy emerges that galvanizes our views. The Surfactant, Positive Pressure, and Oxygenation Randomized Trial mushroomed into a controversy of this sort this past year. In 2007, the “Ashley case,” involving the use of estrogen to attenuate the growth of a girl with profound disabilities, was similarly controversial. Some of the lessons from that debate, in which I was centrally involved, may help advance the discussion about SUPPORT.
“It's all in the stories”
Authors: Montello Martha 
Published: October 2014

AbstractMore than a decade ago, on the day before he died, Bill Bartholome told me something I will never forget. Bill was a pediatrician, medical ethicist, and nationally known advocate for children's rights in health care. He was also, at the time of our conversation, dying of esophageal cancer. Bill had been chair of the Pediatric Ethics Committee at the University of Kansas for many years. He had asked me to take over. I was uneasy. My background is in literature, not philosophy or ethics. I'd worked with the ethics committee at Boston Children's Hospital but had never imagined myself to be an ethicist or aspired to chair an ethics committee. Bill knew that I was worried about whether I was up to the task. The day before he died, he said to me, “You can do this. It's all in the stories.”
Narrative Ethics
Authors: Montello Martha 
Published: October 2014

AbstractAs an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would a philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values.
Narrative Ethics as Dialogical Story‐Telling
Authors: Frank Arthur W. 
Published: October 2014

AbstractThe narrative ethicist imagines life as multiple points of view, each reflecting a distinct imagination and each more or less capable of comprehending other points of view and how they imagine. Each point of view is constantly being acted out and then modified in response to how others respond. People generally have good intentions, but they get stuck realizing those intentions. Stories stall when dialogue breaks down. People stop hearing others' stories, maybe because those others have quit telling their stories. The narrative ethicist's job is to help people generate new imaginations that can restart dialogues.
Narrative Ethics, Narrative Structure
Authors: Jones Anne Hudson 
Published: October 2014

AbstractBy 1999, when Atul Gawande's essay “Whose Body Is It, Anyway?” appeared in The New Yorker, patient autonomy had largely trumped physician paternalism in American medical practice. Gawande uses the stories of actual patients to attempt his counter case for physicians' “talking patients through their decisions.” Toward the end of his essay, Gawande acknowledges that “many ethicists find this line of reasoning disturbing,” but he reassures his readers that “the real task isn't to banish paternalism; the real task is to preserve kindness.”What troubles me, however, is not so much the ethical position Gawande takes but the way he structures his narrative to support his position. “Whose Body Is It, Anyway?” offers an important example for close scrutiny because, in my experience, it so effectively engages readers‐especially medical students‐and persuades them to accept the ethical position it puts forward. Yet Gawande's own reflections about this issue do not stop with this essay. As he has gained clinical experience, he has continued his ethical reflections, and the stories that he tells have changed significantly over the years. I will argue here that close reading and careful narrative scrutiny can alert those who read this essay apart from Gawande's later work to some of the pitfalls in this kind of narrative ethics.
What We talk about When We Talk about Ethics
Authors: Lantos John D. 
Published: October 2014

AbstractI was recently invited to talk about ethics with the staff of a level‐three neonatal intensive care unit. They presented a case featuring a full‐term baby born by emergency caesarean‐section after a cord prolapse that caused prolonged anoxia. Her initial pH was 6.7. She was intubated and resuscitated in the delivery room. Her Apgar score remained at 1 for ten minutes. Further evaluation over the next two days revealed severe brain damage. Her prognosis was dismal.The doctors recommended a do‐not‐resuscitate order. The parents agreed. The doctors suggested a gastrostomy tube. The parents disagreed. Instead, they requested that fluid and nutrition be discontinued. The emotions in the room, as we started to discuss the case, were strong and discordant. Eventually, the conversation wound down. They turned, expectantly, to the visiting bioethicist.
Hashtag bioethics
Authors: Banerjee Mohini 
Published: October 2014

AbstractWhen I first started at the Center, I approached our public affairs and communications manager to see if I could help bolster our Twitter presence. I saw social media as having a potential to reach people in a way academic papers and conferences never could. My own desire to see knowledge of bioethical issues seep into the general public's consciousness fueled this optimistic view. Twitter seemed to be an especially effective method of widening the reach of bioethics. It would help create a wider Hastings Center community by spreading knowledge and creating a new forum for discussion. But Twitter has its limits. I believe new media provides more fluid ways of communicating, but can 140 characters inspire anyone to read and think more about the value of a family's wishes against the costs of keeping a legally dead person on a ventilator?
A Good Night
Authors: Miller‐Smith Laura , Plantz Diane M. 
Published: October 2014

AbstractAs Josie's physicians, we developed trusting relationships with the family, relationships based on honesty. When their daughter passed away a week after the conversation described, at least we had not sheltered them from that possibility but prepared them for it. We continue to wonder, however, what words parents are hearing that we do not intend for them to hear. In addition, we wonder what words they are hearing that do not truly mean what they imply? How can health care providers caring for patients and families recognize that simple words like “good,” “stable,” and “quiet” may be misinterpreted and may affect the trust families place in our communication? As for us, we choose our words more carefully now.
Silencing Marcellus: When the Law Fractures Public Health
Authors: Marks Jonathan H. 
Published: October 2014

AbstractWe tend to think of conflict as bad and compromise as good. But how should we view conflict that exposes potential threats to the environment and health? And what about a compromise between litigants that may adversely affect the interests of third parties or undermine public health? There can be few places in the country where this issue has become more pressing than in my home state, Pennsylvania. The hydraulic fracturing of natural gas in the Marcellus Shale has transformed lives and landscapes here, mainly in rural communities with low‐income populations. The Hallowich family is a case in point.
Bad Words
Authors: Bruce Courtenay R. , Smith Martin L. , Peña Adam M. , Majumder Mary A. 
Published: October 2014

AbstractThe clinical ethicist met with Ms. H to clarify what information she wants and does not want to know. First, she wants to receive any treatment that could prolong her life, regardless of how the treatment affects her ability to engage in activities of daily living. Second, she wants to be included in the decision‐making process as much as possible, as long as clinicians use only “positive” language. Ms. H considers the words “dying,” “chemotherapy,” “radiation,” and “cancer” to be “bad words.” For conversations in which these words cannot be avoided, she wants her clinicians to talk to her son. Her desired engagement includes hearing about risks, benefits, and alternatives to treatments if clinicians use only “positive” language. Finally, she says that she rarely sees doctors and that she is “very scared” of hospitals, despite exhibiting a comfortable demeanor.Should clinicians honor Ms. H's waiver of specified information and, if so, to what degree?
Adrienne Asch: Memories of a Close Friend and Collaborator
Authors: Wasserman David 
Published: October 2014

AbstractAdrienne Asch inspired, challenged, and provoked a generation of bioethicists and philosophers who were discovering the subject of disability. For Adrienne, disability was a complex phenomenon that raised universal issues of embodiment, justice, well‐being, and identity. She insisted that bioethicists and philosophers who invoked disability in discussions about these issues first learn something about it, for which her own work provided critical insights. She argued eloquently that those who relied on unsupported assumptions about disability, even in the most arcane debates, reinforced harmful stereotypes and impoverished their own thinking. At the same time, she urged that the claims of disability scholars concerning discrimination, fairness, and kindred issues be made with philosophical clarity. She was fearless with the smug and insular in both fields, but generous with those, like me, who were merely naive.
What Adrienne Knew: Living Bioethics
Authors: Wolf Susan M. 
Published: October 2014

AbstractAdrienne Asch pioneered a way of doing bioethics that few are brave enough to attempt. In addition to summoning logic, arguing values, and applying reasoning to cases, Adrienne lived bioethics. Without compromising the strength of her analysis, she grounded that analysis explicitly in her own lived experience of disability. Hers was the view from somewhere—a deep invitation to others to rethink everything from embryo selection to end‐of‐life decisions through the lens of lived disability.
What's Left in Her Wake: In Honor of Adrienne Asch
Authors: Emens Elizabeth F. 
Published: October 2014

AbstractIn 1987, Adrienne Asch published a short essay entitled “What's Missing (or What I Haven't Found Yet).” The essay sketched an agenda for future research in disability studies by cataloguing the questions she wished had been answered and the research she wished had been conducted thus far in the field. My tribute to Adrienne, written just over twenty‐five years later, charts a similar path.In this short essay, I will not rehearse the questions that Adrienne set out in the pages of the Disability Studies Quarterly in 1987. Nor will I highlight the many ways the gaps in the field have been partially filled in the intervening years, as Adrienne surely appreciated by the time of her death. I will instead follow Adrienne's inspiring example of asking hard questions.
Making Treatment Decisions for Oneself: Weighing the Value
Authors: Brock Dan W. , Park John K. , Wendler David 
Published: October 2014

AbstractCompetent adults should be permitted to determine the course of their own lives. We may try to influence them. We may ask them, perhaps even implore them, to change their minds. But in the end, they are in charge of their lives. They get to choose their careers, whether and whom to marry, whether to exercise, and whether to have surgery.This emphasis on respect for patients’ autonomy may seem to imply that allowing patients to make their own decisions should always take precedence over other considerations. Given this presumption, there has been almost no discussion in the medical literature or elsewhere about how important this value is and whether it should sometimes be balanced against and give way to other values. This absence of guidance is especially problematic in cases where respect for patient autonomy conflicts with promoting patients’ clinical interests.