bluuebunny/crossref_metadata_2025 huggingface dataset:
Avoiding a “Death Panel” Redux
Authors: Piemonte Nicole M. , Hermer Laura
Published: October 2014

If 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

In “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

The 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

If 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

The 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

As 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

Two 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.
Genetic Discrimination in Employment Is Indefensible
Authors: Rothstein Mark A.
Published: October 2014

The first of three commentaries on “A Defense of Genetic Discrimination,” from the July‐August 2013 issue.
Keeping Time
Authors: Tunzi Marc
Published: October 2014

That'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

Law 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

In 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

The 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

Every 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

More 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

As 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

The 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

By 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

I 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

When 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

As 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

We 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

The 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

Adrienne 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

Adrienne 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

In 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

Competent 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.
Disaster Response or Response as Disaster?
Authors: Baruch Jay
Published: October 2014

On September 1, 2005, Memorial Hospital was on “survival mode.” Hurricane Katrina had felled the levees of New Orleans, submerging a modern city with floodwaters of biblical proportions, tasking physicians and nurses to make morally sound decisions under unprecedented conditions, where, as one physician stated, “[T]he laws of man and the normal standards of medicine no longer applied” (p. 9). In Five Days at Memorial, Sheri Fink, a Pulitzer Prize‐winning journalist, resists the urge to assign easy blame or take a position. Instead, she weaves together the perspectives of a cast of people tested by this catastrophe and constructs a tapestry of experiences that isn't neat and comforting but disturbing, compelling, and admirable all at once.
Personal Statement to Personal Physician: Bait and Switch?
Authors: Breen James O.
Published: October 2014

In our family medicine program, applicants' personal statements largely speak to the value of trusting, continuous doctor‐patient relationships. They give poignant examples of patient interactions that have allowed the applicants to experience the privilege of the intimacy with which patients relate to their doctors. Whatever their true motivations for choosing family medicine, the relational values expressed in the personal statement are the ones we celebrate and incentivize in the residency selection process. However, after donning their freshly pressed white coats, new interns in family medicine hear different definitions of value applied to their chosen specialty.
Neuroimaging and Psychiatry: The Long Road from Bench to Bedside
Authors: Mayberg Helen S.
Published: October 2014

Advances in neuroscience have revolutionized our understanding of the central nervous system. Neuroimaging technologies, in particular, have begun to reveal the complex anatomical, physiological, biochemical, genetic, and molecular organizational structure of the organ at the center of that system: the human brain. More recently, neuroimaging technologies have enabled the investigation of normal brain function and are being used to gain important new insights into the mechanisms behind many neuropsychiatric disorders. This research has implications for psychiatric diagnosis, treatment, and risk assessment. However, with some exceptions, neuroimaging is still a research tool—not ready for use in clinical psychiatry.
Clinical Use of Placebos: Still the Physician's Prerogative?
Authors: Barnhill Anne
Published: October 2014

The American Medical Association's Code of Ethics prohibits physicians from giving substances they believe are placebos to their patients unless the patient is informed of and agrees to use of the substance. Various questions surround the AMA policy, however. One of these has to do with what should be disclosed. The AMA holds that any treatment that the physician believes is a placebo should be identified as such to the patient. But consider a more restrictive policy that requires physicians to defer to the medical community's consensus view about which treatments have a specific effect on the condition being treated. In light of the ethical goals that the AMA identifies—namely, concerns about patient trust, autonomy, and benefit—there are potential advantages to the more restrictive policy.
Research Misconduct Involving Noncompliance in Human Subjects Research Supported by the Public Health Service: Reconciling Separate Regulatory Systems
Authors: Bierer Barbara E. , Barnes Mark
Published: October 2014

Over the past three decades, two separate federal regulatory structures have emerged, each seeking to assure separate aspects of the integrity and ethics of research conducted using federal funding. One set of regulations is described in the Public Health Service Policies on Research Misconduct and relates to research misconduct, defined as consisting of fabrication of data or results, falsification of data and results, or plagiarism, in accordance with the federal‐wide definition adopted by the Office of Science and Technology Policy. The second set of regulations, set forth in the Department of Health and Human Services regulations on the protection of human subjects (known as the “Common Rule”), prescribes a set of ethical and procedural protections for research involving human subjects.

These two sets of research regulations are distinguished from each other by having different foci of enforcement, priorities of protection, oversight officials, oversight procedures, seizure of evidence, standards of proof, expectations of privacy, and appeal procedures for researchers who are subject to adverse findings and penalties. These differences are significant and fundamental. They complicate the process of compliance for institutions and researchers, who are expected to adhere to both sets of standards for the same federally funded research activities in research with human subjects. Compliance is especially complicated when suspected violations of both sets of standards must be investigated and resolved concurrently. This document represents an effort to provide institutions and individuals with practical suggestions as they try to comply with both sets of regulations.
Why Guidance Comes from the Research Community
Authors: Wright David E.
Published: October 2014

The good news is that our uniquely American formula for research regulation has worked well, on the whole, by placing the first‐line administration of the regulations with peers in the institutions and by minimizing the size of the federal oversight agencies and generally limiting intrusive oversight to serious matters. The bad news has been lack of regulatory coordination, both in the federal government and at research institutions. This is the problem addressed in this supplement in the report by Barbara Bierer and Mark Barnes.
The Organ‐That‐Must‐Not‐Be‐Named: Female Genitals and Generalized References
Authors: Rodriguez Sarah B. , Schonfeld Toby L.
Published: October 2014

The reference to the vagina as “it” or “down there” is symptomatic of two larger cultural problems: not naming the vagina when speaking about the vagina, and conflating the vagina with the external female genitalia. The euphemisms and obfuscating language have implications both for lay understandings of female bodies and for the practice of health care. Granting and using a name gives both the named and the namer power and legitimacy.
Health Disparities among LGBT Older Adults and the Role of Nonconscious Bias
Authors: Foglia Mary Beth , Fredriksen‐Goldsen Karen I.
Published: October 2014

This paper describes the significance of key empirical findings from the recent and landmark study Caring and Aging with Pride: The National Health, Aging and Sexuality Study (with Karen I. Fredriksen‐Goldsen as the principal investigator), on lesbian, gay, bisexual, and transgender aging and health disparities. We will illustrate these findings with select quotations from study participants and show how nonconscious bias (i.e., activation of negative stereotypes outside conscious awareness) in the clinical encounter and health care setting can threaten shared decision‐making and perpetuate health disparities among LGBT older adults. We recognize that clinical ethicists are not immune from nonconscious bias but maintain that they are well situated to recognize bias and resulting injustice by virtue of their training. Further, we discuss how clinical ethicists can influence the organization's ethical culture and environment to improve the quality and acceptability of health care for LGBT older adults.
Child Safety, Absolute Risk, and the Prevention Paradox
Authors: Schwartz Peter H.
Published: October 2014

Imagine you fly home from vacation with your one‐and‐a‐half‐year‐old son who is traveling for free as a “lap child.” In the airport parking lot, you put him into his forward‐facing car seat, where he sits much more contentedly than he did in the rear‐facing one that was mandatory until his first birthday. After he falls asleep on the way home, you transfer him to his crib without waking him, lowering the side rail so you can lift him in more easily.

Many parts of this idyllic parenting picture are deemed unacceptably risky according to recent child safety proposals. While these proposals all aim to improve child safety, their possible impact is unclear because there has been little discussion of the absolute risk and risk reduction involved in each. And while precise figures are lacking, rough estimates indicate that the magnitudes are quite small. I will argue that this risk and benefit data raises important questions about the proposals, including whether parents might reasonably believe that the small absolute risk reduction offered by the proposed changes does not justify the attendant burdens. This possibility—termed the “prevention paradox” in other contexts—highlights ethical and theoretical challenges in this area of public health.
The Scholar at Work
Authors: Murray Thomas H.
Published: October 2014

My thirteen years as president of Hastings have been rich in solidarity. Now for some solitude, and a new adventure: Cynthia and I will relocate to Cape Cod, a place rich in family memories. I'll explore the roads and trails on my bicycle and, if I can become a competent kayaker, the waterways. Some of my best thinking has come while riding. I'll have a study there, a place to think and write. I will continue to support the initiatives we've begun at the Center, especially bioethics in the public interest and the flourishing of bioethics internationally.

The challenge is to balance solitude and solidarity. Next year I'll be the Terry Visiting Scholar at Yale, a wonderful chance to discuss ideas with students and faculty there. I'm considering other opportunities to share what I've learned and to learn from others. To everyone, thanks for your patience, wisdom, and support. May your next adventure be surprising and fulfilling.
The Honesty Effect
Authors: Crigger Bette‐Jane , Wynia Matthew K.
Published: October 2014

Anne Barnhill focuses her article in this issue on the American Medical Association's ethics policy governing clinical use of placebos, but the implications of her analysis are deeper, touching on how physicians should make judgments about which interventions to offer patients in the process of shared decision‐making. The bottom line is that, even if an undisclosed placebo might be marginally more effective for a particular patient in the short term, over the long haul the integrity of the patient‐physician relationship relies on doctors being honest with their patients. Even when it comes to placebos, honesty remains the best policy.
Exploring the Limits of Autonomy
Authors: Volpe Rebecca L. , Levi Benjamin H. , Blackall George F. , Green Michael J.
Published: October 2014

Mr. Galanas, an eighty‐six‐year‐old man, intentionally shot himself in the chest and abdomen. Surprisingly, the bullet damaged only his distal pancreas and part of his colon, requiring a diverting colostomy to prevent leakage of bowel fluids into his abdomen. After being admitted, he lies intubated in the intensive care unit awaiting surgery to repair his colon. He is responsive but does not demonstrate clear decision‐making capacity. He grudgingly accepts pain medications but refuses antibiotics and antidepressants. He has a living will that gives his wife durable power of attorney and also explicitly states a desire to refuse all medical interventions if he is permanently unconscious or in an end‐stage condition. Mrs. Galanas reports frequent conversations in which her husband said he would not want to be sustained on life support. She also says that he often mentioned he would not want an ostomy bag—a likely, albeit temporary, outcome of the proposed surgery.

His physicians are nervous about withholding medical interventions when Mr. Galanas's injury is the result of a suicide attempt and his prognosis is good. Should the care team surgically repair his injured colon, regardless of the patient's capacity, his advance directive, and his wife's statement that he would not want surgery or other life‐sustaining treatment?
Dr. Douchebag: A Tale of the Emergency Department
Authors: BARUCH JAY M.
Published: October 2014

“I'm not afraid of dying,” he says, despite his plea on arrival. “Listen up, douchebag. Are you calling my cousin or what?”

The emergency department might be the only sphere of human exchange where one party—patients (and sometimes family)—are permitted to insult, threaten, and even spit at the very people on whom they depend for help, while the offended parties—physicians, nurses, and other health care providers—must not only tolerate the abuse, but treat their tormentors.

Does the ED's collective duty to greater numbers of patients demand a revised ethos of tough love for extreme cases of misbehavior? Can we ask these patients to leave without legal recourse after extending genuine, compassionate efforts to participate in their care—barring evidence of a medical explanation for their toxic comportment or a mental illness that puts them at risk of harming themselves or others?
Who Is “Too Sick to Benefit”?
Authors: Courtwright Andrew
Published: October 2014

Intensive care units provide focused, aggressive medical intervention to critically ill patients. Physicians responsible for ICU triage must decide which patients are sick enough to require this level of care and which can be managed on the general wards. While some patients are too well for the ICU, intensivists increasingly rely on another category, “too sick to benefit,” when denying ICU admission, even if beds are readily available. Recent studies indicate that between 19 and 37 percent of patients refused ICU admission were declined because they were thought too sick to benefit from it, suggesting that physician use of this category is common in ICU triage.

The idea of being too sick to benefit may seem paradoxical given that ICUs exist to treat the sickest of the sick. There is, however, increasing awareness that some diseases progress despite maximal intervention. Although there have been systematic attempts to define these diseases—most notably during the medical futility debates of the 1980s and early 1990s—there is little evidence about which conditions make a patient too sick to benefit from ICU admission. In the absence of a clear understanding of which diseases progress despite maximal care, ICU triage under the category “too sick to benefit” is currently done on a case‐by‐case basis. Contemporary decisions about who is too sick to benefit thus raise a number of ethical issues about what constitutes standard of care, the role of health care providers' judgments of quality of life in triage, and the just allocation of resources.

Addressing these ethical concerns requires us to better define the population of critically ill adults who are too sick to benefit—a conceptual and empirical project. In this article, I recommend employing a diagnostic concept from the neonatal literature: namely, a lethal disease.
The Ethics of Vaginal Birth after Cesarean
Authors: Charles Sonya
Published: October 2014

The decline in providers and facilities that will allow a trial of labor after cesarean forces many women to choose a repeat cesarean. The choice is frequently not much of a choice, however, since the full range of options are often not on the table. This limited “choice” violates obstetricians' obligations both to respect patients' autonomy and to offer them good care. There has been a vigorous but so far not very fruitful debate in the last few years about the lack of access to a trial of labor after cesarean. Some recently released documents express concern about the limited access women have to clinicians and facilities willing to offer a trial of labor after cesarean. But access is likely to remain a problem for the foreseeable future.
Seeking the unseen
Authors: Solomon Mildred Z.
Published: October 2014

When Dan Callahan and Will Gaylin began The Hastings Center, they saw and sought to study the unseen. They were among the very first to recognize that remarkable advances in biomedical technology were generating questions our society had never before faced. As I take the helm of The Hastings Center forty‐plus years later, it's now my job to be sure we see, name, grapple with, and act on today's questions. Over the next two years, the Center will engage its scholars, our Fellows, other bioethicists, scientists, social science and humanities scholars, health care policy‐makers, and key stakeholders such as journalists, educators, and patients in defining today's set of critical questions.
Too Sick
Authors: Kaebnick Gregory E.
Published: October 2014

This issue of the Report is bookended by two pieces that take contrasting although perhaps compatible positions on medical care for those in dire straits. At the end of the issue is an article that considers whether patients may be denied admission to intensive care units on grounds that they are too sick to benefit. We think of ICUs as reserved for the sickest of the sick, notes author Andrew Courtwright, but in fact, “too sick to benefit” is an increasingly common reason given for not putting a patient in the ICU. Meanwhile, the first essay in the book tells the story of a man whose physician more or less told him he was too sick to benefit (under some understanding of the idea) and should opt for death.
Reality Checks
Authors: Dworetz April R.
Published: October 2014

Giving up on our dreams is not easy. I am a neonatologist, and I often watch the parents of my patients wish for the impossible. They come to the NICU with their own stories, their own expectations, and their own values. They have had nine long months to imagine their perfect child and often struggle with learning to accept the hand they have been dealt and the child they really have.

Neonatology and geriatrics have a lot in common. Both specialties treat patients who cannot describe their symptoms. Both deal with family members who are serving as surrogate decision-makers. These family members often wrestle with end‐of‐life issues, and they share a tendency to sometimes base their decisions on emotions rather than on the best interests of the patients involved. I know this, but I didn't really understand it until I lived it.
America's Drug Problem
Authors: Philpott Sean
Published: October 2014

America has a serious drug problem. The problem is not abuse of prescription stimulants by students cramming for the SATs, nor is it the recent spate of violent attacks associated with the use of so‐called bath salts. Rather, the problem is a shortage of critical medicines. The American Society of Health System Pharmacists reports that over two hundred drugs are in short supply. The frequency and number of drug shortages are also increasing steadily, as seen in a recent Food and Drug Administration study that found that the number of reported drug shortages has nearly tripled, from sixty‐two in 2005 to 178 in 2010. There are few quick solutions to the crisis, and the long‐term effect of pending legislation and regulatory changes is unclear.
Scholarly Discussion of Infanticide?
Authors: Garasic MirkO D.
Published: October 2014

I feel the urge to express my solidarity with Alberto Giubilini and Francesca Minerva, the authors of the much‐discussed article “After‐Birth Abortion: Why Should the Baby Live?” that appeared in the Journal of Medical Ethics in February. Both their argument and, more sadly, they themselves suffered a violent attack by people who obviously do not consider freedom of expression an important value. Censorship does not fit well with the mission of scholarship—particularly when the scholarship depends on a method of speculation and hypothetical argument, as in the case of philosophy and bioethics—and the level of hatred and extremism expressed about the article seem out of proportion. Having said this, though, I want to consider why publishing the article was nonetheless inappropriate.
The Affordable Care Act Survives, for Now
Authors: Hall Mark A.
Published: October 2014

The new millennium is still very young, so it is too early to declare National Federation of Independent Business v. Sebelius1 the health law “case of the century,” but that title would not be hyperbolic. Never before have we seen a case of such monumental importance for how health care is financed and delivered in the United States. At the Supreme Court, no decision has been more closely watched and more anxiously awaited since Bush v. Gore in 2000. In the balance was the fate of President Obama's signature piece of domestic legislation, one that affects nearly every aspect of the largest segment of our economy, and so is perhaps the most important piece of social legislation since the New Deal. To no one's surprise, the decision was announced at the very end of the Court's term and was split five to four.

What was very surprising, however, was the Court's embrace of the tax power defense of the individual mandate. And what was outright shocking was a seven‐to‐two majority in favor of finding the Medicaid expansion unconstitutional unless states are allowed to opt out of the expansion.

The case holds great significance not only for the fate of the Patient Protection and Affordable Care Act—and, thus, for the nation's health care public policy—but also for constitutional doctrine that applies much more broadly than in the health care arena.
A Mutual Aid Society?
Authors: Jost Timothy Stoltzfus
Published: October 2014

In her classic 1993 article, “The Struggle for the Soul of Health Insurance,” Deborah Stone contrasted the principle of mutual aid—“the essence of community” in the face of sickness—and the principle of actuarial fairness, under which “each person should pay for his own risk.” Stone claimed that “in most societies sickness is widely accepted as a condition that should trigger mutual aid,” while in the United States, a competitive insurance industry fosters in people “a sense of their difference, rather than their commonalities, and their responsibility for themselves only, rather than their interdependence,” leading to the fragmentation of “communities into ever‐smaller, more homogeneous groups” and “the destruction of mutual aid.”

The United States has, as Stone observes, long been an outlier in its approach to financing care for sickness. Over the past half century, we have developed mutual aid‐based programs to care for some, but most Americans have had to pay the “actuarially fair” cost of their care, either as individuals or as employee groups. Mutual aid has existed only on a limited scale. The Affordable Care Act is the most comprehensive attempt to date to remedy this situation.
Justice Roberts's Health Care Stewardship
Authors: Nichols Len M.
Published: October 2014

The issues before the Supreme Court, arising as they did out of multiple cases and divergent appellate court rulings, were quite complex, and its final decision will be parsed rather differently by lawyers, health policy wonks, and economists (or metaphysical philosophers, in Chief Justice John Roberts's memorable phrase). This essay will focus on one singular element: did the final ruling enhance or detract from our collective power to exercise stewardship over our health care resources?

Clearly Americans diverge on key features of a desirable society and on the wisdom of using government to achieve even mutually desirable goals. But before politics settles the fate of the Affordable Care Act (and perhaps also the federal role in health policy for the foreseeable future), we should focus on what the Court has allowed us to consider: if we want it to, federal power may constitutionally be marshaled to compel insurers to end discrimination against the sick and to offer more transparent products so the marketplace will better serve consumers.