Most donated organs in the United States come from brain dead donors, while a small percentage come from patients who die in “controlled,” or expected, circumstances, typically after the family or surrogate makes a decision to withdraw life support. The number of organs available for transplant could be substantially if donations were permitted in “uncontrolled” circumstances–that is, from people who die unexpectedly, often outside the hospital. According to projections from the Institute of Medicine, establishing programs permitting “uncontrolled donation after circulatory (...) determination of death,” or uDCDD, throughout the United States has the potential to provide 22,000 more donation opportunities annually. In contrast, U.S. controlled donation after circulatory determination of death, or cDCDD, cases have increased progressively over the past decade from 87 to 848 donors, but currently account for only 10.6 percent of all deceased donors. Following the IOM recommendations, several projects exploring the feasibility of uDCDD were funded by the federal government, including a grant from the Health Resources and Services Administration that supported a pilot project in New York City in which the authors of this article participated.A key feature of our protocol, and indeed of many uDCDD protocols, is the initiation of preservation methods such as chest compressions and extracorporeal membrane oxygenation shortly after death in order to perfuse and preserve the donor's organs. Critics of uDCDD argue that the means of determining death deviates from generally ascribed principles. They assert that reinstituting circulation in order to preserve organs has the effect of “undoing” the prior determination of death. The result is that cDCDD is widely accepted and practiced routinely even though it only marginally increases the number of organs available for transplantation, and uDCDD is widely considered unacceptable despite being ethically embraced and proven to significantly increase organ donation opportunities in other countries. This article explores the evolution of this counterintuitive state of affairs and calls for a policy that, in line with the IOM report, allows for both cDCDD and uDCDD protocols. (shrink)

Why mediation? -- What makes bioethics mediation unique? -- Before you begin a bioethics mediation program -- The stages of bioethics mediation -- Techniques for mediating bioethics disputes -- How to write a bioethics mediation chart note -- Mediation with a competent patient : Mr. Samuels's case -- Mediation with a dysfunctional family : Mrs. Bates's case -- A complex mediation with a large and involved family : Mrs. Leonari's case -- Discharge planning for a dying patient : a role-play (...) -- An at-risk pregnancy : a role-play -- HIV and postsurgical complications in the ICU : a role-play -- Treating the dying adolescent : a role-play -- She didn't mean it : a role-play -- Don't tell mama : a role-play -- An at-risk pregnancy : a role-play transcript -- HIV and postsurgical complications in the ICU : a role-play transcript -- She didn't mean it: a role-play transcript -- Don't tell mama : a role-play transcript. (shrink)

Clinical ethics consultation has become an important resource, but unlike other health care disciplines, it has no accreditation or accepted curriculum for training programs, no standards for practice, and no way to measure effectiveness. The Clinical Ethics Credentialing Project was launched to pilot‐test approaches to train, credential, privilege, and evaluate consultants.

In “Surmounting Elusive Barriers: The Case for Bioethics Mediation,” Bergman argues that professionals trained in bioethics, reluctant to acquire the skills of mediation, would better be replaced by a cadre of mediators with some bioethics knowledge, to which I respond, “yes . . . but.”.

For those with advanced life-limiting illness, the optimization of quality of life and avoidance of nonbeneficial treatments at the end of life are key ethical concerns. This article evaluates the efficacy of an Interdisciplinary Ethics Panel (IEP) approach to decision making at the end of life for unbefriended nursing home residents who lack decisional capacity and have advanced life-limiting illness, through the use of a ninestep algorithm developed for this purpose. We reviewed the outcomes of three quality-of-care phased initiatives conducted (...) in our facility, a large public nursing home in New York City, between June 2016 and February 2020, which indicated that this IEP approach promoted advance-care planning, as palliative measures were endorsed to optimize quality of life for this vulnerable population at the end of life. We also examined another quality-of-care initiative when this IEP approach was applied to end-of-life decision making for nursing home residents who had a surrogate during the COVID-19 pandemic. This application appeared to be beneficial in adding more residents to our Palliative Care Program while it improved rates of advance-care planning. When all of the above findings are considered, we believe this novel IEP approach and algorithm have the potential to be applied elsewhere after appropriate assessment. (shrink)

At a time when even a brief hospital stay means becoming terrifyingly dependent on the kindness of strangers, this compassionate and practical book by a prominent medical ethicist gives power back to patients while providing invaluable guidance to their friends and families. "A cutting-edge book about cutting-edge issues (that) every American must know. . . ".--Alan Dershowitz.

The Clinical Ethics Credentialing Project (CECP) was intiated in 2007 in response to the lack of uniform standards for both the training of clinical ethics consultants, and for evaluating their work as consultants. CECP participants, all practicing clinical ethics consultants, met monthly to apply a standard evaluation instrument, the “QI tool”, to their consultation notes. This paper describes, from a qualitative perspective, how participants grappled with applying standards to their work. Although the process was marked by resistance and disagreement, it (...) was also noteworthy for the sustained engagement by participants over the year of the project, and a high level of acceptance by its conclusion. (shrink)

The Clinical Ethics Credentialing Project (CECP) was intiated in 2007 in response to the lack of uniform standards for both the training of clinical ethics consultants, and for evaluating their work as consultants. CECP participants, all practicing clinical ethics consultants, met monthly to apply a standard evaluation instrument, the QI tool , to their consultation notes. This paper describes, from a qualitative perspective, how participants grappled with applying standards to their work. Although the process was marked by resistance and disagreement, (...) it was also noteworthy for the sustained engagement by participants over the year of the project, and a high level of acceptance by its conclusion. (shrink)

Evolving practice requires peer review of clinical ethics (CE) consultation for quality assessment and improvement. Many institutions have identified the chart note as the basis for this process, but to our knowledge, electronic health record (EHR) systems are not necessarily designed to easily include CE consultation notes. This article provides a framework for the inclusion of CE consultation notes into the formal EHR, describing a developed system in the Epic EHR that allows for the elaborated electronic notation of the CE (...) chart note. The implementation of the “meaningful use” criteria for EHR, mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, requires that health professionals meet certain standards for quality, efficiency, and safety, all of which overlap with the goals of standardization, peer review, and quality improvement within CE consultation. (shrink)

Clinical ethics consultation has become an important resource, but unlike other health care disciplines, it has no accreditation or accepted curriculum for training programs, no standards for practice, and no way to measure effectiveness. The Clinical Ethics Credentialing Project was launched to pilot‐test approaches to train, credential, privilege, and evaluate consultants.

Advance directives have been lauded by scholars and supported by professional organizations, Congress, and the United States Supreme Court. Despite this encouragement, only a small number of capable patients execute living wills or appoint health care agents. When patients do empower proxies, doctors may be uncertain about the scope of their duties and obligations to these persons who, in theory, stand in the shoes of the patient. This article argues for a conscious focus on the ethical duties, emotional supports, and (...) guidance owed by physicians to health care agents. (shrink)

Unlike bioethics mediators who are employed by healthcare organizations as outside consultants, mediators who are embedded in an institution must be authorized to chronicle a clinical ethics consultation (CEC) or a mediation in a patient’s medical chart. This is an important privilege, as the chart is a legal document. In this article I discuss this important part of a bioethics mediator’s tool kit in my presentation of a case illustrating how bioethics mediation may proceed, and what this approach using both (...) bioethics and mediation may add. (shrink)

In 1997, the United States incarcerated over 1.7 million persons in local jails and in state and federal prisons. These inmates are disproportionately poor and persons of color. Many lack adequate access to health care before incarceration and present to correctional services with major unaddressed medical problems.Convictions for drug possession and use have increased the number of injection drug users with HIV and AIDS in prisons. Determinate sentencing and “three strikes and you’re out” laws have increased the number of inmates (...) who are aging and dying during their sentences. Their feelings reflect those of Larry Rideau, sentenced to life without parole and founder of The Angolite—an award-winning prison newspaper at Louisiana's Angola Prison—“The dream of getting out, you equate with heaven. Dying in prison you equate with hell.”. (shrink)

In 1997, the United States incarcerated over 1.7 million persons in local jails and in state and federal prisons. These inmates are disproportionately poor and persons of color. Many lack adequate access to health care before incarceration and present to correctional services with major unaddressed medical problems.Convictions for drug possession and use have increased the number of injection drug users with HIV and AIDS in prisons. Determinate sentencing and “three strikes and you’re out” laws have increased the number of inmates (...) who are aging and dying during their sentences. Their feelings reflect those of Larry Rideau, sentenced to life without parole and founder of The Angolite—an award-winning prison newspaper at Louisiana's Angola Prison—“The dream of getting out, you equate with heaven. Dying in prison you equate with hell.”. (shrink)

How one reacts to lying depends on individual temperament, intellectual training and value commitments, freedom status,, consideration of consequences, emotional resilience an...

Autumn Fiester identifies an important element in clinical ethics consultation (CEC) that she labels, from the Greek, aporia, “state of perplexity,” evidenced in CEC as ethical ambiguity. Fiester argues that the inherent difficulties of cases so characterized render them inappropriate for voting and more amenable to mediation and the search for consensus. This commentary supports Fiester’s analysis and adds additional reasons for rejecting voting as a process for resolving disputes in CEC including: it distorts the analysis by empowering individual voters (...) preferences and biases rather than focusing on the interests and wishes of the patient and family; it offers an insufficiently sensitive model for resolving the awesome, nuanced, conflicted, and ethically complex issues surrounding life and death; it marginalizes minority opinions that may have moral validity. (shrink)

In “Surmounting Elusive Barriers: The Case for Bioethics Mediation,” Bergman argues that professionals trained in bioethics, reluctant to acquire the skills of mediation, would better be replaced by a cadre of mediators with some bioethics knowledge, to which I respond, “yes … but.”.

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the United States, has (...) initiated a two‐step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. (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 lieu of an abstract, here is a brief excerpt of the content:Working on the Clinton Administration's Health Care Reform Task ForceNancy Neveloff Dubler (bio)This narrative is based on my understanding of the elements of the Health Security Act that may have ethical implications. I have reconstructed these elements from my experience on the Health Care Reform Task Force and they are part of the health care plan that the President presented to Congress. (At the time this article went (...) to press, the actual legislation, which should answer my remaining specific questions more clearly, had not yet been released.) I perceive the most important features of the plan to be:• The legislation will create a "right" to health care for all citizens—access to care will be universal;• The plan will involve some form of managed competition in which groups of providers (called Approved or Accredited Health Plans (AHPs)) will offer comparable benefit packages at slightly (or widely) different costs;• The AHPs will negotiate with the Health Alliance (HA) to determine the price that they will charge their consumer-patients;• There will be open enrollment with no barriers to coverage, such as exclusions for pre-existing conditions;• Community rating will be in effect in different localities and enrolled persons in any AHP will pay the same premium;• The coverage for any enrolled person will be portable;• The overall structure will be a cooperative federal/state enterprise in which the states will have quite extensive abilities to fashion variations of the basic plan to meet their particular needs;• Primary care will be encouraged and incentives for physicians to train in primary care specialties provided;• Non-physician providers will be central to the functioning of the health care plans;• Efforts will be made to develop a "person power" pool so that people with an abstract "right" to health care will have real access to providers, in their localities, who can fulfill the promise that the right creates; [End Page 421]• The goal of cost containment will be central to the organization and regulation of the system;• Administrative simplicity and quality protections will be central.Co-chairing the Bioethics Working Group (BWG) of the White House Task Force on Health Care Reform was a unique experience. Approximately 40 Task Force working groups were established by Hillary Rodham Clinton, the President, and the senior Task Force staff. Various members of the President's office and other knowledgeable members of the Executive Branch selected the participants. In our group, appointments were made largely on the recommendations of the co-chairs. The BWG, among the last of the groups formed, carried the official name "The Working Group on the Ethical Foundations of the New System" and was jointly led by me and Marion Gray Secundy, a Professor of Bioethics at Howard University. The fact that the leadership of the Task Force saw fit to establish such a group, thereby confirming that bioethics is a player in the arena of health care policy, was in itself significant and was made no less so by the lack of clarity regarding the group's aims and goals.The working groups of the Task Force were organized into clusters, determined by the relatedness of the somewhat distinct, but always overlapping, content of their investigations. Separate clusters and working groups, for example, looked at mental health, long term care, and the benefit package and coverage for low-income and non-working families. On this last issue there was also a working group that explored health policy initiatives for underserved populations. This multiple focus on related issues proved to be an excellent method for ensuring that the complexity of these topics was sufficiently explored. There was a published schedule for when these groups met together, and members of other groups who had similar or overlapping concerns were invited to attend and to participate.Every week or so, all of the working groups reported to the Task Force leadership, under the direction of Ira Magaziner, in a process called a "tollgate." Prior to the tollgate, the working groups were required to submit formal written analyses of the problems they had most recently been considering. Copies of these documents were placed in a special room so that those who were interested could review... (shrink)

This factual case study is one of a series demonstrating ethical dilemmas in medicine, science, the social sciences, and public policy. Although the case is based on fact, it has been edited to preserve confidentiality and to emphasize the ethical questions. Readers are invited to submit cases for consideration for this series. Case descriptions should be typed, doubled‐spaced, and should not exceed 750 words.

Throughout the nineteenth and early twentieth centuries, judges and lawmakers sought to erase the visibility of unmarried women. In the public law arena, for example, legislators conflated women and wives for the purpose of the franchise, arguing that women did not need the vote because their husbands voted for them. In the private law arena, doctrines intended to guarantee support to unmarried women functioned by constructing single women's legal identities in relation to marriage, thereby suggesting that marriage could provide for (...) all women's material needs. This essay argues that understanding the history of single women's legal rights is critical to understanding the legal construction of marriage as the dominant institution for regulating all women's private relationships to men and public relationships to the state. Denying single women's existence allowed the law to ignore the potential threat they posed to a marriage-centric socio-legal order. Legal and political changes in the early decades of the twentieth century, however, made it increasingly difficult for the law to deny the existence of unmarried women. As single women gained social prominence, nonlegal writers in the 1930s and 1940s produced a new genre of prescriptive and descriptive literature for and about women living outside of marriage. Unlike earlier legal texts, these works embraced single women as a permanent and visible part of society. Like their legal predecessors, however, these modern authors sought to minimize the threat posed by single women to the institution of marriage, pointing to single women as proof of marriage's modern, consensual, democratic nature. (shrink)