The Texas Advance Directive Act allows physicians and hospitals to overrule patient or family requests for futile care. Purposefully not defining futility, the law leaves its determination in specific cases to an institutional process. While the law has received several criticisms, it does seem to work constructively in the cases that come to the review process. We introduce a new criticism: While the law has been justified by an appeal to professional values such as avoiding harm to patients, avoiding the (...) provision of unseemly care, and good stewardship of medical resources, it is applied incompletely. It allows physicians and institutional committees to refuse “futile” treatments desired by patients and families while at the same time providing no way of regulating physicians who recommend or even push “futile” treatments in similar cases. In this sense, the TADA is incomplete on its own terms. (shrink)

While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...) this scope of work for ourselves and to help shape the broader conversation about the impact of academic research. Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact. (shrink)

The National Institute of Mental Health (Bethesda, MD) reports that approximately 5.2 million Americans experience post-traumatic stress disorder (PTSD) each year. PTSD can be severely debilitating and diminish quality of life for patients and those who care for them. Studies have indicated that propranolol, a beta-blocker, reduces consolidation of emotional memory. When administered immediately after a psychic trauma, it is efficacious as a prophylactic for PTSD. Use of such memory-altering drugs raises important ethical concerns, including some futuristic dystopias put forth (...) by the President's Council on Bioethics. We think that adequate informed consent should facilitate ethical research using propranolol and, if it proves efficacious, routine treatment. Clinical evidence from studies should certainly continue to evaluate realistic concerns about possible ill effects of diminishing memory. If memory-attenuating drugs prove effective, we believe that the most immediate social concern is the over-medicalization of bad memories, and its subsequent exploitation by the pharmaceutical industry. (shrink)

In 1989, Susan Wolf convincingly warned of a troublesome consequence that should discourage any movement in American society towards physician-assisted death—a legal backlash against the gains made for limiting life-sustaining treatment. The authors demonstrate that this dire consequence did not come to pass. As physician-assisted suicide gains a foothold in USA and elsewhere, many other slippery slope arguments are being put forward. Although many of these speculations should be taken seriously, they do not justify halting the new practice. Instead, our (...) courts, regulatory agencies, journalists, professional organisations and researchers should carefully monitor and study it as it unfolds, allowing continuous improvement just as our society has done in implementing the practice of limiting life-sustaining treatment. (shrink)

: Although "brain death" and the dead donor rule—i.e., patients must not be killed by organ retrieval—have been clinically and legally accepted in the U.S. as prerequisites to organ removal, there is little data about public attitudes and beliefs concerning these matters. To examine the public attitudes and beliefs about the determination of death and its relationship to organ transplantation, 1351 Ohio residents ≥18 years were randomly selected and surveyed using random digit dialing (RDD) sample frames. The RDD telephone survey (...) was conducted using computer-assisted telephone interviews. The survey instrument was developed from information provided by 12 focus groups and a pilot study of the questionnaire. Three scenarios based on hypothetical patients were presented: "brain dead," in a coma, or in a persistent vegetative state (PVS). Respondents provided personal assessments of whether the patient in each scenario was dead and their willingness to donate that patient's organs in these circumstances. More than 98 percent of respondents had heard of the term "brain death," but only one-third (33.7%) believed that someone who was "brain dead" was legally dead. The majority of respondents (86.2%) identified the "brain-dead" patient in the first scenario as dead, 57.2 percent identified the patient in a coma as dead (Scenario 2), and 34.1 percent identified the patient in a PVS as dead (Scenario 3). Nearly one-third (33.5%) were willing to donate the organs of patients they classified as alive for at least one scenario, in seeming violation of the dead donor rule. Most respondents were not willing to violate the dead donor rule, although a substantial minority was. However, the majority of respondents were unaware, misinformed, or held beliefs that were not congruent with current definitions of "brain death." This study highlights the need for more public dialogue and education about "brain death" and organ donation. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

In the clinical setting, questions of medical ethics raise a host of perplexing problems, often complicated by conflicting perspectives and the need to make immediate decisions. In this volume, bioethicists and physicians provide a nuanced, in-depth approach to the difficult issues involved in bioethics consultation. Addressing the needs of researchers, clinicians, and other health professionals on the front lines of bioethics practice, the contributors focus primarily on practical concerns -- whether ethics consultation is best done by individuals, teams, or committees (...) how an ethics consult service should be structured the need for institutional support and techniques and programs for educating and training staff -- without neglecting more theoretical considerations, such as the importance of character or the viability of organizational ethics. (shrink)

Since the Harvard Committees bold and highly successful attempt to redefine death in 1968 (Harvard Ad Hoc committee, 1968), multiple controversies have arisen. Stimulated by several factors, including the inherent conceptual weakness of the Harvard Committees proposal, accumulated clinical experience, and the incessant push to expand the pool of potential organ donors, the lively debate about the definition of death has, for the most part, been confined to a relatively small group of academics who have created a large body of (...) literature of which this issue of the Journal of Medicine and Philosophy is an example. Law and public policy, however, have remained essentially unaffected. This paper will briefly review the multiple controversies about defining death in an attempt to explain why they have and will remain unresolved in the academic community and have even less chance of being understood and resolved by politicians, legislators, and the general public. Considering this, we will end by suggesting the probable course of public policy and clinical practice in the decades ahead. (shrink)

: Protection of human subjects from investigators' conflicts of interest is critical to the integrity of clinical investigation. Personal financial conflicts of interest are addressed by university policies, professional society guidelines, publication standards, and government regulation, but "intrinsic conflicts of interest"—conflicts of interest inherent in all clinical research—have received relatively less attention. Such conflicts arise in all clinical research endeavors as a result of the tension among professionals' responsibilities to their research and to their patients and both academic and financial (...) incentives. These conflicts should be disclosed to research subjects and managed as assiduously as are financial conflicts of interest. (shrink)

BackgroundFew comparative studies of clinical ethics consultation practices have been reported. The objective of this study was to explore how American and Japanese experts analyze an Alzheimer's case regarding ethics consultation.MethodsWe presented the case to physicians and ethicists from the US and Japan (one expert from each field from both countries; total = 4) and obtained their responses through a questionnaire and in-depth interviews.ResultsEstablishing a consensus was a common goal among American and Japanese participants. In attempting to achieve consensus, the (...) most significant similarity between Japanese and American ethics consultants was that they both appeared to adopt an "ethics facilitation" approach. Differences were found in recommendation and assessment between the American and Japanese participants. In selecting a surrogate, the American participants chose to contact the grandson before designating the daughter-in-law as the surrogate decision-maker. Conversely the Japanese experts assumed that the daughter-in-law was the surrogate.ConclusionOur findings suggest that consensus building through an "ethics facilitation" approach may be a commonality to the practice of ethics consultation in the US and Japan, while differences emerged in terms of recommendations, surrogate assessment, and assessing treatments. Further research is needed to appreciate differences not only among different nations including, but not limited to, countries in Europe, Asia and the Americas, but also within each country. (shrink)

This book is the first comprehensive report and analysis of the Dutch euthanasia experience over the last three decades. In contrast to most books about euthanasia, which are written by authors from countries where the practice is illegal and therefore practised only secretly, this book analyzes empirical data and real-life clinical behavior. Its essays were written by the leading Dutch scholars and clinicians who shaped euthanasia policy and who have studied, evaluated and helped regulate it. Some of them have themselves (...) practised euthanasia. The book will contribute to the world literature on physician-assisted death by providing a comprehensive examination of how euthanasia has been practised and how it has evolved in one specific national and cultural context. It will greatly advance the understanding of euthanasia among both advocates and opponents of the practice. (shrink)

The transplantation and procurement of human organs has become almost routine in American society. Yet, organ transplantation raises difficult ethical and psychosocial issues in the context of “controlled” death, including the blurring of boundaries between life and death, self and other, healing and harming, and killing and letting die. These issues are explored in the context of the actual experiences of organ donors and recipients, brain death, the introduction of non‐heartbeating donor protocols, and the increasing reliance on living donors. The (...) author draws on a thematic analysis of the way that organ transplantation is presented in the media, films, and science fiction and on his clinical experience as a psychiatrist working with transplant patients, their families, and the nurses and physicians who care for them. (shrink)

Two factors, medical science's growing control over the timing of death and the increasingly desperate need for organs, have led to a reopening of the debate about the definition of death and have forced a consideration of aspects of the determination of death that had never been addressed before. Without the pressing need for organs, the definition of death would have remained on the back shelf, the conversation of a few interested philosophers or theologians. This article examines some new questions (...) raised by medical technology and the frantic search for new, morally acceptable sources of human organs over the past thirty years. This examination concludes that death itself is a social construct and that, in a pluralistic society such as ours, a conclusive definition of death or determination of the moment of death is out of the reach of both medical science and philosophy. (shrink)

A response to “CAHPS Surveys: Valid and Valuable Measures of Patient Experience,” byWilliam G. Lehrman and Mark W. Friedberg, and to “Courage, Context, and Contemporary Health Care,” by Jeffrey T. Berger.