Bruce Jennings

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that promotes best ethical practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility.

This essay examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer's disease and other forms of chronic, progressive dementia. It counters philosophical views that deny both agency and personhood to individuals with Alzheimer's on definitional or analytic conceptual grounds. It develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of life and models of guardianship that are based on a hedonic legal standard of “best interests.” As an alternative, it proposes a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.”

Discussions of research involving vulnerable populations have left the homeless comparatively ignored. Participation by these subjects in drug studies has the potential to be upsetting, inconvenient, or unpleasant. Participation occasionally produces injury, health emergencies, and chronic health problems. Nonetheless, no ethical justification exists for the categorical exclusion of homeless persons from research. The appropriate framework for informed consent for these subjects of pharmaceutical research is not a single event of oral or written consent, but a multi-staged arrangement of disclosure, dialogue, and permission-giving. Payments and other rewards in biomedical research raise issues of whether it is ethical to offer inducements to the homeless in exchange for participation in drug studies. Such inducements can influence desperate persons who are seriously lacking in resources. The key is to strike a balance between a rate of payment high enough that it does not exploit subjects by underpayment and low enough that it does not create an irresistible inducement. This proposal does not underestimate the risks of research, which are often overestimated and need to be appraised in light of the relevant empirical literature.

The further development of public health ethics will be assisted by a more direct engagement with political theory. In this way, the moral vocabulary of the liberal tradition should be supplemented—but not supplanted—by different conceptual and normative resources available from other traditions of political and social thought. This article discusses four lines of further development that the normative conceptual discourse of public health ethics might take. The relational turn. The implications for public health ethics of the new ‘ecological’ or ‘relational’ interpretation that is emerging for concepts such as agency, self-identity, autonomy, liberty and justice. Governing the health commons. The framework of collective action problems is giving way to notions of democratic governance and management of common resources. The concept of membership. Membership is specified by the notions of equal respect and parity of voice and agency. The concept of mutuality. Mutuality is specified by the notions of interdependent concern and care.

Across the world, an authoritarian and exclusionary form of populism is gaining political traction. Historically, some populist movements have been democratic and based on a sense of inclusive justice and the common good. But the populism on the rise at present speaks and acts otherwise. It is challenging constitutional democracies. The polarization seen in authoritarian populism goes beyond the familiar left-right political spectrum and generates disturbing forms of extremism, including the so-called alternative right in the United States and similar ethnic and nationalistic political movements in other countries. The field of bioethics will be profoundly affected if authoritarian populism displaces constitutional democracy. But the field has a significant contribution to make to rebuilding the communal and civic foundations upon which constitutional democracy rests.

The concept of consensus is often appealed to in discussions of biomedical ethics and applied ethics, and it plays an important role in many influential ethical theories. Consensus is an especially influential notion among theorists who reject ethical realism and who frame ethics as a practice of discourse rather than a body of objective knowledge. It is also a practically important notion when moral decision making is subject to bureaucratic organization and oversight, as is increasingly becoming the case in medicine. Two models of consensus are examined and criticized: pluralistic consensus and overlapping consensus. As an alternative to these models, the paper argues that consensus refers to the dialogic aspects of a broader normative conception of democratic moral agency. When the preconditions for that dialogic democratic practice are met, consensus has a justificatory role in ethics; when they are not, consensus, as distinct from mere agreement, does not emerge and can have no moral authority. Keywords: applied ethics, bioethics, consensus, contract theory, democracy, discourse ethics, liberalism CiteULike Connotea Del.icio.us What's this?

This paper advances a new paradigm in clinical ethics education that not only emphasizes development of individual cli but also focuses on the institutional context within which health care professionals work. This approach has been applied to the goal of improving the care provided to critically and terminally ill adults. The model has been adopted by about thirty hospitals and nursing homes; additional institutions will soon join the program, entitled Decisions Near the End of Life. Here, we describe the history and rationale for this approach, its goals, pedagogical assumptions, and design.

This paper argues that more attention should be paid to the civic functions of ethical discourse about the professions and to the moral virtues inherent in their practice and traditions. The ability of professional ethics to articulate civic ideals and virtues is discussed in relation to three issues. First, should professional ethics aim to enlighten ethical understanding or to motivate ethical conduct? Second, how should professional ethics define the professional's moral responsibilities in the face of ethical dilemmas — should the professional attempt to resolve the dilemma ethically or to change the social conditions that create the dilemma in the first place? The third issue discussed in the paper is whether professional ethics should be based on the model of regulation and rational self-interest or on the model of virtue and a fundamental personal commitment to the ideal of a certain form of life? In order for work in professional ethics to attain intellectual credibility among a non-philosophical audience, it must develop a coherent and convincing position on each of these issues.