Done good.

How did bioethics manage to grow, flourish and ultimately do so well from a very unpromising birth in the 1970s? Many explanations have been advanced. Some ascribe the field's growth to a puzzling, voluntary abnegation of moral authority by medicine to non-physicians. Some think bioethics survived by selling out to the biomedical establishment-public and private. This transaction involved bestowing moral approbation on all manner of biomedicine's doings for a seat at a well-stocked funding table. Some see a sort of clever intellectual bamboozlement at work wherein bioethicists pitched a moral elixir of objective expertise that the morally needy but unsophisticated in medicine and the biological sciences were eager to swallow. While each of these reasons has its defenders, I think the main reason that bioethics did well was that it did good. By using the media to move into the public arena, the field engaged the public imagination, provoked dialogue and debate, and contributed to policy changes that benefitted patients and healthcare providers.

Refugees, humanitarian aid and the right to decline vaccinations.

Recent instances of governments and others refusing humanitarian assistance to refugees and IDPs (internally-displaced persons) unless they agreed to polio immunization for their children raise difficult ethical challenges. The authors argue that states have the right and a responsibility to require such vaccinations in instances where the serious vaccine-preventable disease(s) at issue threaten others, including local populations, humanitarian workers, and others in camps or support settings.

Gene therapy: socioeconomic and ethical issues. A roundtable discussion.

Gene therapy research has the potential to revolutionize the way in which many human diseases are treated. Despite its enormous potential, roundtable panelists concluded that the field needs time to mature scientifically without pressure to develop a marketable therapeutic product. In addition, health care decision makers, physicians, and the lay public need to be educated on the future medical, economic, and ethical ramifications of gene therapy.

Nondirectiveness in genetic counseling: a survey of practitioners.

The literature defines nondirectiveness as a genetic counseling strategy that supports autonomous decision-making by clients [Fine, 1993]. This study surveyed 781 full members of the National Society of Genetic Counselors (NSGC) between April and June, 1993, to assess how they define nondirectiveness, its importance to their practice, and how and why they are ever directive. Almost 96% of 383 respondents reported viewing nondirectiveness as very important, but 72% stated they are sometimes directive. The most common reasons for directiveness include: difficulties ensuring that verbal and nonverbal cues remain nondirective; to recommend testing; client is unable to understand; a better choice is clear; to recommend medical care or counseling; or when a client has difficulty making a decision. Nonsignificant Chi-square analyses indicated that counselor responses were independent of counselor demographics. While these findings suggest that nondirectiveness is a goal in genetic counseling, it is not the only goal. Recognition of the delicate balance between directing the process and defining the outcome of genetic counseling can enhance clinicians' ability to discern the circumstances under which directiveness is and is not appropriate.

Survival of adult bone marrow transplant patients receiving mechanical ventilation: a case for restricted use.

A retrospective study of all adults receiving BMT over a 13 year period at a large transplant center was performed to determine overall survival and prognostic indicators of poor outcome among patients receiving mechanical ventilation (MV). Of 653 adult BMT patients, 191 (29%) received MV after transplant. Of these 191, 161 (84%) died on the ventilator or within hours of extubation; 18 (10%) survived 1 week after extubation and 6 (3%) survived 6 months. Survival was not predicted by type of graft, use of total body irradiation (TBI) or reason for intubation. The patient's age and the timing of intubation were predictive of survival. Of patients > or = 40 years, 98% died within a week of extubation and all died within 30 days. Similarly, of those intubated within 90 days of transplant, 94% died within a week of extubation and all died by day 100. These results suggest that MV is rarely effective in achieving long-term survival in adult BMT recipients, especially older patients and those early in their transplant course. An argument, based on cost/benefit considerations and medical futility, can be developed to withhold MV in certain patient subsets apart from a clinical research trial.

Ethical considerations in lung retransplantation.

The decreased survival of patients undergoing lung retransplantation has raised ethical concerns regarding the "fairness" of using organs for retransplantation. This emphasis on organ utility could have important consequences for the doctor-patient relationship and the practice of retransplantation. In an attempt to balance the responsibilities of individual physicians toward their patients and the responsibilities of transplantation programs toward the public resource of donated organs, we propose a limit on the percentage of organs used for experimental or innovative procedures such as retransplantation. This limit would allow the physician to function as the patient advocate, ensure that organs are realistically allocated to patients most likely to benefit from transplantation, and permit an evolving definition of the medical efficacy of retransplantation.

Everyday matters in the lives of nursing home residents: wish for and perception of choice and control.

OBJECTIVES: This study examined the importance that nursing home residents and nursing assistants ascribed to control and choice over everyday issues, the satisfaction of residents with their control and choice over these issues, and the nursing assistants' impressions of the extent to which control and choice exist for nursing home residents on everyday matters. DESIGN: Cross-sectional in-person interviews with a stratified representative sample of nursing home residents and nursing assistants using semi-structured interview protocols with both fixed-choice and open-ended questions. SETTING: A random sample of 25 nursing homes in the Twin Cities, MN area; a random sample of five nursing homes in North Little Rock, AR; all five nursing homes in Sante Fe, NM; and five purposively selected nursing homes in each of New York City and Los Angeles, CA. PARTICIPANTS: One hundred thirty-five cognitively intact residents, three from each facility, were selected and included the resident council chair, one randomly selected short-stay resident, and one randomly selected long-stay resident from each facility. Also participating were 134 nursing assistants (1 selected randomly from each shift from those employed at least two-thirds time and who had worked in the facility for at least 3 months). MEASUREMENTS: The most important measurements were ordinal-level ratings of the importance of choice and control for nursing home residents over 10 selected areas of everyday life; ordinal measures of residents' satisfaction with their choice and control over these areas; and nursing assistants' ratings of the extent to which they thought it possible for residents to achieve choice and control. Open-ended comments were also elicited. Also measured were demographic data, ADL status, frequency of trips away from the nursing home, frequency of receiving visitors, and (for nursing assistants) length of employment, wages, job satisfaction, and extent to which they knew the residents under their care. MAJOR RESULTS: Cognitively intact nursing home residents attach importance to choice and control over matters such as bedtime, rising time, food, roommates, care routines, use of money, use of the telephone, trips out of the nursing home, and initiating contact with a physician. Nursing assistants view such control as important to residents. Residents and staff differ significantly in the importance attached to particular items, with staff placing lower importance than residents on use of the telephone and personal expenditures and higher importance on control and choice over visitors and formal nursing home activities. Residents were not very satisfied with their control and choice, and nursing assistants viewed them as unlikely to experience control and choice. Nursing home, resident, and staff characteristics were not associated with the patterns of results. CONCLUSIONS: A self-defeating cycle has been identified where neither resident nor staff are optimistic about achieving more resident control and choice, which both groups perceive as desirable. To end this cycle, suggestions are offered for structuring the role of the nursing assistant, physician and nurse leadership, changes in nursing home routines and practices, and public policy changes.

Can money and morality mix in medicine?

The escalation of health care costs in the United States has become a problem now that business and taxpayers are paying larger shares of these costs. Many believe that the only way to cope with rising costs is to institute explicit rationing of access to health care services. Proposals to ration based upon age, "sin" exclusions, physician gatekeeper incentives, patient ability to pay, and community values all have shortcomings. An alternative approach to controlling costs that emphasizes efficiency by cutting administrative and malpractice overhead costs and universally providing those medical services that have proven patient benefit is proposed. Physicians must take a more active role in the debate to ensure that patient needs are met and that expenditures are directed toward effective therapies.

Is altruism enough? Required request and the donation of cadaver organs and tissues in the United States.

The lack of an adequate supply of cadaver organs and tissues for transplantation to those in need poses a major challenge to the transplant community and to those responsible for public policy. Historically, Americans have relied upon a combination of altruism and voluntarism to generate an adequate supply of cadaver organs and tissues. The ongoing shortage of organs and tissues has led, in recent years, for calls to abandon these values in favor of either a market system or a system of presumed consent. A survey of the impact of the federal and state laws that require that requests be made to next of kin for organ and tissue donation when a death occurs in a hospital setting shows that inadequate efforts have been made to implement these laws. Before abandoning altruism and voluntarism, health care professionals must insist that zealous efforts in education, enforcement, and coordination be made to implement these new laws and regulations.

The telltale heart: public policy and the utilization of non-heart-beating donors.

The transplant community has quietly initiated efforts to expand the current pool of cadaver organ donors to include those who are dead by cardiac criteria but cannot be pronounced dead using brain-based criteria. There are many reasons for concern about "policy creep" regarding who is defined as a potential organ donor. These reasons include loss of trust in the transplant community because of confusion over the protocols to be used, blurring the line between life and death, stress on family members, and burdens imposed on health care providers when a long-standing policy regarding who can serve as a cadaver organ donor is unilaterally changed. While these concerns are not sufficient reason for abandoning efforts to broaden existing eligibility standards for cadaver donation, they are sufficient reasons for the transplant community to desist in changing existing standards without widespread professional and public discussion.

For better or worse? The moral and policy lessons of Minnesota's HealthRight legislation.

Minnesota's recently enacted HealthRight legislation places the state at the forefront of American health reform. How did the state manage to overcome the policy gridlock in evidence in other states and at the national level? And how well does the legislation fare under close ethical scrutiny? Among the most important factors that permitted Minnesota to enact reforms were the explicit linkage in the legislative debate of the goal of cost containment to the desire to expand access, the public perception that HealthRight is incremental and consistent with earlier reform efforts in Minnesota, and the lengthy public debate that preceded the enactment of HealthRight. Although it endeavors to create a fair and efficient health care system, it is not at all certain that HealthRight, in its present form, will achieve these normative goals.

Human experimentation and medical technology.

The various forms of protection devised by society for human subjects are examined. These are government regulation, informed consent, review at the local institutional level, and legal protection (malpractice suits). The related issue of how to define research is discussed.

The ethics of in vitro fertilization.

Advances in medicine's ability to assist reproduction in those afflicted with infertility raise numerous ethical questions both for potential recipients of the techniques and for society as a whole. Society must decide what level of resources should be committed to the treatment of infertility in light of the fact that many children are not readily placed in adoptive or foster homes and the increasing competition that exists for scarce health care resources. The ethical uncertainty about the moral status of embryos and the moral acceptability of nonstandard techniques of in vitro fertilization raise further troubling questions about the adequacy of consent, committee review, and other protections for the welfare of families. Although it may not yet be appropriate to call for legislation or regulation in this area, there is a very real need to increase professional and public discussion of the ethical and policy questions raised by assisted reproduction.

Organ transplants: the costs of success.

KIE: The current U.S. policy of "encouraged volunteerism" for the procurement of organs for transplantation is judged to be a failure. Demand is not being met, a complex and inefficient network of profit-making and not-for-profit procurement agencies has developed, and the opportunity for informed consent by relatives or friends in emergency situations is seen to be a "charade." Caplan advocates a public policy of "presumed consent" whereby hospitals may harvest all suitable cadaver organs unless objection is indicated by family members or by the individual beforehand. He also proposes the establishment of a national registry of consenting organ donors to expedite tissue matching and to eliminate present surreptitious searching of existing data banks, and a national agency to evaluate and regulate transplant programs and to develop guidelines for patient selection.^ieng

Organ procurement: it's not in the cards.

KIE: Caplan disagrees with the conclusions reached by Alfred M. and Blair L. Sadler in a companion article, that the current American system of voluntary organ donation is working. Caplan maintains that the unmet increase in demand for cadaver organs as a result of advances in transplantation technology necessitates a change in public policy. After rejecting the market approach to organ procurement, he relates the experience with "presumed consent" in France, where physicians are legally permitted to remove organs without consent but rarely act without the authority of family members. Caplan recommends a policy of "required request" for the United States, in which health personnel would be required by law to approach the relatives of potential donors for consent.^ieng