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Evidence from Europe suggests establishing out-of-hospital, uncontrolled donation after circulatory determination of death (UDCDD) protocols has potential to substantially increase organ availability. The study objective was to derive an out-of-hospital UDCDD protocol that would be acceptable to New York City (NYC) residents. Participatory action research and the SEED-SCALE process for social change guided protocol development in NYC from July 2007 to September 2010. A coalition of government officials, subject experts and communities necessary to achieve support was formed. Authorized NY State and NYC government officials and their legal representatives collaboratively investigated how the program could be implemented under current law and regulations. Community stakeholders (secular and religious organizations) were engaged in town hall style meetings. Ethnographic data (meeting minutes, field notes, quantitative surveys) were collected and posted in a collaborative internet environment. Data were analyzed using an iterative coding scheme to discern themes, theoretical constructs and a summary narrative to guide protocol development. A clinically appropriate, ethically sound UDCDD protocol for out-of-hospital settings has been derived. This program is likely to be accepted by NYC residents since the protocol was derived through partnership with government officials, subject experts and community participants.

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Historically, quality assurance studies have received scant ethical attention. The advent of information systems capable of supporting research-grade continuous quality improvement projects demands that we clearly define how these projects differ from research and when they require external review. The ethical obligation for the performance of quality assurance projects, with its emphasis on identifiable immediate action for a served population, is a critical distinction. The obligation to perform continuous quality improvement is a deliverable of the social contract entered into implicitly by patients and health care providers and systems. In this article, the authors review the ethical framework that requires these studies, evaluate the differences between quality assurance studies and classic research, and propose criteria for requiring external review.

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Although dramatic advances in clinical treatment have greatly improved the lives of many people with HIV/AIDS, many other patients do not have information about or access to these treatments because of health care providers' presumptive judgments about patients' ability to adhere to medical regimens. The authors contend that with sufficient support and education most patients, even those with difficult social and medical problems, can be helped to initiate and maintain HIV treatment in accordance with current clinical standards. This commentary delineates a new paradigm for HIV care in which patients and providers collaborate on individualized plans to establish patients' readiness for treatment, ensure maintenance of treatment, and make use of the social services necessary to accomplish these goals. Providers have an ethical responsibility to do everything possible to see that patients who might benefit from new HIV treatments have a fair opportunity to do so, and health systems have a responsibility to facilitate this process. Substantial progress toward meeting these responsibilities can be made within the current health care environment.

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Demented AIDS patients in long-term care present interconnected medical, ethical, and management problems. The patient's right to care must be considered in the context of the obligations owed to other residents and to staff members. A principled analysis should focus on substantive and procedural issues: the concept of autonomy must be modified by notions of accommodation to the needs of others; procedural fairness should guide discussions. A dynamic analysis should identify the various parties, their conflicting interests, and possible routes for resolving differences.

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Women at risk for human immunodeficiency virus (HIV) infection are often poor and members of racial or ethnic minorities. In addition to legal concerns that might be common among persons with similar sociodemographic characteristics, HIV infection adds the potential of possible stigma and discrimination, as well as the prospect of illness and increased mortality. To determine women's perceptions of need for and access to legal services and whether such perceptions are affected by HIV infection, from November 1993 through September 1995 we interviewed 509 women with or at risk for HIV infection by virtue of injection drug use or high-risk sexual behaviors in New York and Baltimore, Maryland. A majority of women, regardless of HIV serostatus, reported current or future needs for legal assistance with government benefits. More than 25% reported needing current or future legal help with housing, debts, arrangements for care of children, a will, and advance directives. Substantial minorities of women reported other legal needs. HIV-positive women were significantly more likely to report anticipated future need for help with paternal custody or visitation, current need in making a will, and anticipated future assistance with advance directives. For most items, a majority of women thought they knew where to receive help. However, among women reporting a current need, only a minority actually were receiving legal assistance. This study suggests that the extent of legal needs among women with or at risk for HIV infection is substantial, and that few receive legal assistance. With few exceptions, at least for women early in the course of illness, HIV infection does not appear to alter the pattern or extent of legal needs. There are dramatic differences, regardless of HIV status, between expectation and reality in women's access to legal services.

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The advent of triple-drug therapy for HIV disease has raised the concern that disadvantaged patients with multiple social problems may be nonadherent to treatment. Fearing that partial adherence will lead to drug resistance, some clinicians are withholding these powerful new drugs from such patients. The historical record demonstrates that labeling patients as nonadherent may be both stigmatizing and inaccurate. Since 1900, such adjectives as ignorant, vicious, and recalcitrant have been used to describe patients who do not follow medical advice. Less judgmental terms, such as nonadherent and noncompliant, are now used, but these terms still imply that patients should obey physician-imposed regimens. Studies of nonadherence have consistently shown that the problem is widespread among all persons and cannot reliably be predicted on the basis of patient characteristics. This paper argues that physicians should deemphasize the standard approach of predicting and correcting nonadherent behavior in certain patients. Rather, clinicians should encourage all HIV-positive patients to devise individualized treatment plans that can facilitate reliable ingestion of medication. Although the potential development of resistance to triple-drug therapy remains an important public health issue, concern about this possibility must be balanced with respect for patients' rights. Encouraging the active participation of HIV-positive persons in their own treatment will help avoid judgmental and inaccurate assessments of patient behavior and may help patients take medications more successfully.

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Managed care has not only intensified existing conflicts between patient and provider, it has, by its very nature, changed the shape and scope of the healthcare enterprise and introduced an entirely new set of disputes. The decision-making dynamics have been altered, and the cast of players has expanded. Traditionally, the therapeutic interaction took place between the physician and the patient although it occasionally included the patient's family. Whatever obligations existed, such as fidelity, confidentiality, and standard of care, they bound only those parties. Now, as the managed care organization has interposed itself between the patient and the physician, the dyad has become a triad. The power balance has shifted, and a new set of rights and responsibilities now flows between and among the players, each of whom has interests that may or may not coincide. This article argues that, because of its cost containment origins and orientation, managed care increases the likelihood that misunderstandings, disagreements and disputes will develop into full-blown conflicts. If managed care is to succeed financially and operate with integrity, it must develop techniques for managing the increasing conflicts that arise inevitably between and among the organizations, physicians, and patients. It is clear that the voice of the patient needs to be strengthened within the new complex decision-making, review, and appeal procedures. Mediation is the most appropriate method of dispute resolution for the managed care setting because it balances the disparities in power endemic to the bureaucratization of medicine and refocuses the interests of the various parties. Using bioethics consultation as a model for dispute mediation provides a set of principles and guideline tasks that can be applied effectively to managed care.

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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.

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Even without comprehensive health care reform legislation, the US health care system is undergoing significant changes. Probably the most important change is the expansion of managed care with significant price competition. One of the major concerns about this change is the effect of managed care on the physician-patient relationship. To provide a normative standard for evaluating the effect of changes, we need an ideal conception of the physician-patient relationship. This ideal can be summarized by six C's: choice, competence, communication, compassion, continuity, and (no) conflict of interest. For the 37 million uninsured Americans there is little chance of realizing the ideal physician-patient relationship, since they lack the choice of practice setting and physician, receive care in a rushed atmosphere that undermines communication and compassion, and have no continuity of care. While many insured Americans may believe they have an ideal physician-patient relationship, the relationship is threatened by lack of a regular assessment of competence, by financial incentives that undermine good communication, and by the persistence of conflict of interest. The shift to managed care may improve the choice of practice settings, especially in sections of the country that currently lack managed care; increase choice of preventive services; make quality assessments more routine; and improve communication by making greater use of primary care physicians and nonphysician providers. However, the expansion of managed care and the imposition of significant cost control have the potential to undermine all aspects of the ideal physician-patient relationship. Choice could be restricted by employers and by managed care selection of physicians; poor quality indicators could undermine assessments of competence; conductivity requirements could eliminate time necessary for communication; changing from one to another managed care plan to secure the lowest costs could produce significant disruption in continuity of care; and use of salary schemes that reward physicians for not using medical services could increase conflict of interest.

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BACKGROUND: Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care professionals in the management of children who are critically or terminally ill. METHODS: Through a 3-day meeting in Tarrytown, NY, attended by a group of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health care decision-making for, children who are gravely ill. RESULTS: The group agreed that the needs and interests of the child must be the central focus of any treatment plan and that the child should be involved to as great extent possible, consistent with developmental maturity, in the decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natural guardians of children and ought to have great latitude in making decisions for them. However, parental discretion is not absolute and professionals must maintain an independent obligation to protect the child's interests. CONCLUSIONS: Decision-making should be collaborative among patient, parents, and professionals. When conflict arises, consultation and ethics committees may assist in resolution. When cure or restoration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain medication and compassionate concern for the physical, psychological, and spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.

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As the recent increase in cases of tuberculosis is addressed, there is a danger that the need for increased protection of the public health will create a climate in which the rights of individuals with tuberculosis and human immunodeficiency virus (HIV) infection may be disregarded. This paper considers ethical and policy issues in the control of tuberculosis. The authors conclude that mandatory HIV testing is not critical to effective tuberculosis control, and that although individuals infected with HIV are at increased risk for developing tuberculosis, exclusionary employment practices are not justified. Because failure to complete the course of tuberculosis treatment increases the prospect that drug-resistant strains will develop, it is crucial to require all those who commence treatment to complete their therapy. To ensure the completion of treatment, special attention must be paid to the needs of the homeless, drug users, and those with psychiatric impairments. In addition, all tuberculosis patients should begin their posthospital care under direct observation. Patients who fail to complete treatment despite efforts to encourage and facilitate their cooperation should be subject to confinement after a hearing with full due process protections.

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