In this paper, an attempt is made to give patient autonomy added conceptual clarity. A concept of patient autonomy grounded in both negative and positive freedoms is defended. Amartya Sen's capabilities approach is used as a conceptual framework in which patient autonomy and fairness are defined compatibly. It is argued that in a socially fair healthcare system, everyone should have at least the degree of patient autonomy that affords access to those healthcare services necessary for survival and a minimally adequate level of quality of life, consistent with each person's naturally endowed health characteristics.

A few years ago a battered infant was admitted to a California hospital. After a period of observation and testing, the physicians concluded that the infant had been beaten so badly that his brain was almost completely destroyed, leaving him permanently unconscious. The hospital had just adopted a policy specifying that life-sustaining treatment for permanent unconsciousness was futile and, therefore, not indicated. According to this policy, after suitable subspecialty consultations and deliberations, including efforts to gain parental agreement and documentation of unanimous ethics committee support, the patient's physician had the authority to discontinue life-sustaining treatment. The infant's physician wished to do this. The mother, however, who was the prime battery suspect, insisted that the baby be kept alive.

The physician of fifty years ago is barely recognizable today. Rural, autonomous, and isolated, he did everything from mending broken bones to pronouncing people dead. He was responsible for a well-circumscribed community, who came to him for all their medical needs, regardless of the hour.

Robert Nozick, in what is surely one of the most intriguing and provocative footnotes in modern philosophical writing, referred in Anarchy, State and Utopia to the notion of a “genetic supermarket.” In keeping with the central arguments of that text, his suggestion was that choices about the genetic composition of future generations should, as far as possible, be left in the hands of private individuals, and should not be determined or restricted by the state. This free market in genetic screening would meet “the individual specifications (within certain moral limits) of prospective parents,” and would possess “the great virtue that it involves no centralized decision fixing the future human type(s).” In short, prospective parents would be allowed, to whatever extent was rendered possible by current technology, to choose the genetic traits of their future children.

No political, economic, or cultural segment of society has escaped the universal impact of recent cataclysmic change. Physicians were no exception. During the 20th century, all members of society, including physicians, have experienced change of enormous speed and magnitude. Futurist Alvin Toffler noted that global societal transformation has created a “future shock” of personal malaise that poses difficulty for both individual and group adaptation. Toffler further described current change as a fundamental shift and conflict in all aspects of civilization (how we live, work, and relate to each other). Toffler also noted major alterations in the basis for distribution of societal power (who controls what, why, and how). One manifestation of recent change directly affecting all members of society, including physicians, has been the social transformation of medicine that has been a power shift from the individual physicians to control by organizations and management.

Fifty years ago, 23 Nazi physicians were defendants before a military tribunal in Nuremberg, charged with crimes against humanity. During that trial, the world learned of their personal roles in human experimentation with political and military prisoners, mass eugenic sterilizations, state-ordered euthanasia of the “unfit,” and the program of genocide we now know as the Holocaust. These physicians, and their colleagues who did not stand trial, were universally condemned in the free world as ethical pariahs. The term “Nazi doctor” became the paradigm for total defection from the most rudimentary elements of medical morality. The caduceus literally became the instrument of the swastika.

Here is the doubt that triggers my inquiry: I have two beliefs that are apparently at odds. The first is that we should never kill; the second, that we should always attempt to alleviate pain. The apparent conflict between these beliefs arises from the fact that death may constitute the ultimate pain relief.

The Spring 1999 issue of Cambridge Quarterly (Volume 8, Number 2) adds to the growing body of academic inquiry into the goals of neonatal intensive care practices. Muraskas and colleagues thoughtfully presented the possibility of nontreatment for neonates born at or under 24 weeks gestation. Jain, Thomasma, and Ragas explained that quality of future life must not be ignored in clinical deliberation. And Hefferman and Heilig described once again the dilemmas nurses face when caring for potentially devastated neonates kept alive by technology. These authors take brave steps by publicly questioning the trend of intensive medical support for most every American-born product of conception. But many questions addressing the goals of neonatal intensive care remain, and few authors have actually tried to distill these goals.

The critique of the United Network for Organ Sharing (UNOS) liver allocation policy by Kenneth Himma has flaws related to the complexities and evolutionary nature of the field. Recent improvements in transplantation have achieved national attention of this sort. There has been an evolution, unequaled elsewhere in medicine, of a national data set and national rules. The transplant community might have been more effective in communicating the details of this, and the problems associated with organ allocation policy. The novelty and complexity of the new rules understandably can produce misleading conclusions.

Many people see high income as the primary motivation of today's American physicians. But in “The Culture of Physician Autonomy, 1900 to Present,” Dr. Pont offers a provocative new idea: that preserving professional autonomy has been a far more powerful motivation through this century.

Telemedicine encompasses medical practice, teaching, and research with real-time interactions over distances too great for unaided communication. It includes audio and video transmissions, either separately or combined, and can be done through mechanical (e.g., signal flags or lights) or electronic means (e.g., telecommunications). In many ways, telemedicine is a subset of medical informatics, itself a rapidly developing field. Prior definitions have been broader, including not only medical practice over distance, but also simple information transfer.

At the end of this century there are so many occasions, so many residues of the most violent of times, that challenge the very idea of forgiveness—residues personal, political, social, and cultural. The harms are vast and yet close to home: alcoholism takes its toll on relationships, divorce undermines love, parental harshness and abuse create generations of problems for offspring, addictions of every sort turn humans into caged spirits. Additional and even greater challenges include infidelity, breaking public promises, political power plays, torture, genocidal slaughtering of races and tribes, civil and cultural wars, ancient enmities—Northern Ireland, Bosnia, the Tutsis and Hutus, the Shiite and Suni Moslems, the settlers and African immigrants in South Africa, indigenous populations against the dominant culture. The open violence and rapaciousness of human enmity can be viewed now in the displacement of masses of people in Kosovo. Said the U.N. High Commissioner for Refugees, Sadako Ogata, about the Kosovo crisis: “It is frightening … that this century, as in its darkest hours, should end with the mass deportation of innocent people.”

In brief compass, I will touch on three of the central ethical and public policy issues that divide those who are opposed to physician-assisted dying from those who are supportive of this practice. These are: (1) the moral distinction (if any) between actively hastening death and passively allowing to die; (2) how to interpret the Hippocratic tradition in medicine with respect to physician-assisted death; and (3) whether physician-assisted suicide can be effectively regulated. I shall summarize the arguments pro and con with respect to each issue, and also indicate my own position.

In “A Critique of UNOS Liver Allocation Policy,” I argued that the UNOS policy of placing acute liver failure patients (ALF patients) above chronic liver failure patients (CLF patients) on the transplant list fails to satisfy the principles of utility and justice that ostensibly guide UNOS allocation policy. Further, I argued that physician discretion in evaluating ALF and CLF patients should be expanded—not constrained. In response, Dr. Burdick attempts to justify the policy constraints on physician discretion on the strength of objective differences between ALF and CLF; as he puts it, “the distinction between acute liver failure and progression of chronic liver disease … is clear in the way brain death is.”

The point of Judith Jarvis Thomson's violinist example is to establish that one person, A, can acquire a right to use the body of another person, B, if and only if B performs some kind of affirmative act that gives A such a right. On her view, the reason it is permissible for you to unplug yourself from the violinist is that you did nothing to give the violinist a right to use your body: the violinist was plugged into you without your consent. Thus it follows that the mere fact that A needs use of B's body to survive is not enough to give rise to a right in A to use B's body. Accordingly, Thomson concludes, the claim that the fetus has a right to life does not imply abortion is morally impermissible.

Clinical research has become a burgeoning activity in recent years, largely stimulated by the pharmaceutical industry's interest in new drugs with high marketing profiles. Several other forces fuel this thrust: the increasing dependence of academic medical institutions on research funding from industry; the need for large, efficient multicenter trials to obtain reliable and statistically significant results in the shortest possible time for drug registration purposes; and access to research subjects in “developing” countries. The intense interest in HIV/AIDS research and recent controversies about revisions to the Helsinki Declaration, which have been seen by some to be motivated by the desire to facilitate exploitative research in “developing” countries, have stimulated renewed interest in the ethics of clinical research.

In a special issue of this journal, a range of authors addressed the critical problem of difference in bioethics. To what extent do class, culture, ethnicity, and race affect the ethical decisions that patients and professionals must make in a medical context? Those arguing for an understanding of cultural influences in bioethical decisionmaking—for example, Hern, Koenig, Moore, and Marshall—typically argue from the perspective of individual case studies to demonstrate the importance of these social constructs. Others, like Erika Blacksher, however, worry that this approach will obscure the uniqueness of individual decisionmakng patterns, allowing all persons of a single group to be aggregated as if their class, cultural construct, or religious affiliation were the single motive element in their medicolegal decisionmaking. There is, she cautions, a risk of misuse if a professional care provider reflexively assumes individual patient or surrogate reactions on the basis of ethnicity or culture.

I am in the process of trying to organize an ethics committee at a large community mental health center in Central Massachusetts and am seeking advice from anyone with experience in this or a similar milieu. The agency is a large (almost 700 employees), nonprofit, community-based program that operates under the auspices of a broad, academically affiliated, behavioral health system. An independent board of trustees, responsible to the parent organization governs the agency. The agency primarily provides outpatient care and treatment to adults and children with mental health, substance abuse, developmental disabilities, and homelessness issues. It does not provide any psychiatric emergency or acute in-patient mental health services but does operate an inpatient detoxification unit for substance abuse treatment and “first offender” DUI program. Additionally, the agency has a vast network of residential programs and transitional facilities for individuals with a history of chronic mental illness and substance abuse problems. Outpatient medical care is also provided to homeless clients who reside in area shelters (including a “wet” shelter for men and women) and a large number of clients who have HIV/AIDS and/or who have been dually diagnosed (substance abuse and mental illness), and are part of a scattered-site supportive housing program.

Post-exposure prophylaxis (PEP) in the form of combination drug therapy is now recommended for healthcare workers following occupational HIV exposure. The expansion of this form of preventive medicine to include other types of HIV transmission, notably through sexual activity, raises a number of ethical concerns.

There is good news, and there is bad news. The good news is that in my experience, younger physicians generally are much more concerned about the cost of clinical tests and treatments, and about justly distributing finite medical resources, than were those who practiced medicine in the fee-for-service era. The bad news has at least three components. First, with respect to medically nonbeneficial treatment in the ICU, managed care has not yet given evidence of wanting to put the brakes on unrealistic family demands for aggressive medical interventions. Second, managed care is frustrating many healthcare professionals as well as patients. And third, managed care has no apparent interest in addressing, and may even have contributed to, the problem of medical indigence. Let me develop these propositions more fully.