A request that an ethics committee or consultant analyze the ethical issues in a case, delineate ethical options, or make a recommendation need not automatically but often does elicit legal information. In a recent book in which ethics consultants described cases on which they had worked, almost all cited a legal case or statute that had shaped the consultation process. During a period of just a few months, case consultation done under the auspices of one university hospital ethics committee involved interpretation of statutes on living wills, durable powers of attorney, competency, confidentiality, guardianship, AIDS testing, and disability (personal observation). At another hospital, 30% of ethics consultations were thought to involve legal issues. Attorneys at a third hospital estimated that virtually every case involves legal issues. The notion that ethics consultation is an “amalgam” of medicine, ethics, interpersonal skills, and law is gaining currency. Ethics consultation has become a channel through which law enters the clinical setting.

This document was developed by prosecutor A. Josephus Jitta, Chief, Office of Justice, Alkmaar, The Netherlands, with assistance from physicians and is typical of the euthanasia report forms completed by medical examiners and coroners In The Netherlands.

The issue of physician refusal of requested treatment has fueled a two-pronged debate in our society-one on the meaning of futility and the other on the limits of patient autonomy. The latter is a genuinely philosophic dispute; the former, it seems, is a modern relapse into nominalism.

It is not the meaning of a word, but the moral basis for the actions of the par-ticipants that should be the focus of our attention, Yet the medical literature distracts us with articles titled “Medical Futility: Its Meaning and Ethical Implica-tions” “The Problem with Futility” “Who Defines Futility?,” “The Illusion of Futility,” and even “Beyond Futility.”

The history of the futility debate, which was launched by a 1983 study of Bedell and Delbanco that demonstrated the ineffectiveness of CPR for certain catego-ries of patients, has been documented elsewhere. Here we will inquire if the term, and its rapid intrusion into the medical lexicon, serves a useful purpose or if, as Truog suggested, we would all be better off if this new buzzword were jettisoned.

The development of neonatology and the establishment of neonatal intensive care units has led to a vast array of new medical ethical problems and dilemmas centered around discontinuing treatment or nontreatment decisions. Neonatology has become one of the fields that has made clear that medical success is only rarely nonproblematic. The new technology can be a blessing for some, but it may also become a sad experience to others, with life-long repercussions.

The ethical problems of neonatology transcend national boundaries. Nevertheless, there are differences in approach among various countries. In The Netherlands, the ethical deliberations have been a matter of public debate, but most of the decision making is left to the medical profession; these decisions are considered too harsh for the general public. Recently, two developments have emerged. The Royal Dutch Medical Association (RDMA) and the Dutch Pediatrics Society have published reports with guidelines and ethical reflections. Over the same period of time, cases have been brought to court for legal analysis and the development of case precedence.

Much has been written about the role of hospital ethics committees. Ethics committees may have begun in Seattle in the early 1960s, but they were reified in. New Jersey by the Quinlan Court in the 1970s and thrived in the national bioethics movement of the 1980s.

In this flurry of ethics activity, several new forms of ethics committees have evolved. New forms of ethics committees include patient care-oriented ethics committees (RM, QM, & QA). Many ethicists are familiar with mission-oriented ethics committees (IRBs & HECs). Such committees have taken on new roles, and Include PROs, IPCs, and HREAPs. In general, these committees are regulatory in nature and may often rely on rules and regulations to assess patient cases, research protocols, and health professional practices.

Partly because physicians can “never say never,” partly because of the seduction of modern technology, and partly out of misplaced fear of litigation, physicians have increasingly shown a tendency to undertake treatments that have no realistic expectation of success. For this reason, we have articulated common sense criteria for medical futility. If a treatment can be shown not to have worked in the last 100 cases, we propose that it be regarded as medically futile. Also, if the treatment fails to restore consciousness or alleviate total dependence on intensive care, we propose such treatment be judged futile. This definition provides clear end points and encourages the profession to review data from the past and perform, prospective clinical studies that not only report treatments that work but also treatments that do not work. We have also argued that, in a variety of settings, physicians have no ordinary ethical obligation to offer futile interventions (Schneiderman et al. unpublished). Although physicians should inform, and discuss all decisions to withhold or withdraw medical treatments with patients, they need not obtain the patient's permission to desist from futile interventions.

The health of newborns has always been subject to the natural lottery. When in the past a severely disabled baby was born, nature provided the “solution,” and the child did not survive. Medical technology has brought about a change; fetuses who would have died during pregnancy or newborns who once would have had little chance to survive are now kept alive. Although these technological advances do benefit many children, the dark side is that more severely handicapped babies are surviving.

When a severely disabled baby is born, all persons concerned are faced with emotional difficulties as well as moral and legal dilemmas. Questions that arise include whether it is acceptable, morally and legally, to allow the severely handicapped newborn to die by forgoing treatment or by direct intervention.

Many recent events have contributed to the resurgence of the historically cyclical debate over euthanasia. Now, the focus rests on physician-assisted suicide. Many landmark events regarding physician-assisted suicide have occurred within the last year alone. For example, Derek Humphry's Final Exit recently became a best seller, giving people the detailed knowledge of how to “self-deliver” In The New England Journalbf Medicine, Dr. Timothy Quill shared his touching experience of assisting his patient “Diane” after she chose to decline treatment options for leu- kemia. Dr. Jack Kevorkian made use of his highly publicized “death machine” to help Janet Adkins and subsequently, several other women, end their lives

In the United States, physicians are Increasingly functioning In the consultative role. This change in role Is undoubtedly a result of a surge in the numbers of specialists, the relative decreasing number of primary care physicians, and the emergence of tertiary care centers as primary treatment providers. This change In the style of practicing medicine has led to role confusion In attending physician-patient-consultant relationships.

There is little to indicate from, her circumstances that events would propel Helga Wanglie, an 86-year-old Minneapolis woman, into the center of public controversy. We know little of her life prior to the events that removed her from the world of conscious, sentient beings. By the time of her death on 4 July 1991, Mrs. Wanglie had become the focus of a nationwide public and professional debate on the rights of a patient in a persistent vegetative state (PVS) to receive aggressive medical treatment when such treatment is felt by the patient's doctors not to be in the patient's best interests.

CQ: The Baby Bas Ross case stirred much public debate in The Netherlands since 1988 -a newborn infant with Down's syndrome whose parents refused to consent to a surgery that would have repaired an otherwise fatal congenital anomaly. Can you share your thoughts with us on this case?

HD: I was the first ethicist to comment on this case because I was a friend of Dr. Molenaar, who was the final surgical decision maker for Baby Bas. A physician and I supported his decision throughout the prosecution that followed. We also summarized the case in the N.T.V.G., the Dutch Magazine of Medicine. We argued In the article that parents should have the option to make nontreatment decisions. Moreover, In cases where the physician has to perform aggressive medical interventions, there certainly must be thorough and sound justification to ensure that the decision to Intervene Is in the best interest of the child.

Approximately 30 years ago, a son prepared a cup of milk mixed with insecticide and arranged for his mother to unknowingly administer the poison to his father, who had been suffering severe pain after a cerebral apoplectic attack and demanding that his son assist him. in dying. After drinking the mixture, the father died, and the son was charged with homicide.

My experience concerning cases similar to the Wanglie case indicates that there was virtually no possibility of a solution for the conflict between the different expectations of the Wanglie family and those of the physicians caring for Helga Wanglie. A persistent vegetative state precludes a return to consciousness unless an extraordinary phenomenon takes place. Therefore, the physicians expected to be relieved of the duty of continuing to give Mrs. Wanglie respiratory care. However, her family thought it their duty to provide their loved one with the best possible treatment. The family based their position on the claim that life is God's gift and that only He has the right to terminate it. Such spiritual convictions are perceived as reflective of a higher “truth” and are not predisposed to negotiation or change according to the situation.

Methuselah, it is said, lived 969 years. His state of health at death is not revealed. It can only be surmised that he was surely not robust and, no doubt, was subject to all of the infirmities of old age and the tragic indignities associated with senility.

Jonathan Swift captured well the “curse” of immortality when, in Gulliver's Travels, he created a group of individuals, the Struldbrugs, who, when encountered, dulled what had heretofore been an appetite for perpetual life. The Struldbrugs were allowed to be born totally exempt from the “calamity of human Nature,” in that their minds were free “and disingaged (sic), without the Weight and De pression of Spirits caused by the continued Apprehension of Death.” They were thus condemned “to a perpetual continuance in the World.” In his travels, Gulliver found some Struldbrugs well over 1,000 years old.

In the 10 years since the birth of “Baby Doe,” the decisions confronted daily by neonatologists and parents of sick or premature infants have been the focus of a great deal of attention. Issues raised by these decisions have been vigorously debated and discussed in the popular media in political and governmental forums, and in the professional literatures of a variety of academic disciplines. These discourses have illuminated a number of moral and ethical principles that may govern these decisions and have contributed to the development of regulatory and procedural constraints upon this process, including requirements for establishment of infant care review committees at all hospitals that provide neonatal intensive care services. However, the philosophical concepts espoused by theoreticians, although often helpful as abstractions, are rarely invoked at the bedside as decisions are sought for individual patients. No clear consensus has emerged on how these ideas should be incorporated into clinical practice or on the role of mandated ethics committees or discretionary ethics consultants. Consequently, there are wide disparities in decision-making processes both within and among institutions. Failures of these systems to protect neonatal patients or their families remain distressingly common and have attracted considerable attention in the lay press. Although there can be no universal decision tree that can dictate the course of this complex process in all cases, a clearly articulated operative paradigm that defines essential features of an effective and equitable decision-making process is essential to identify the causes of failures and conflicts that arise when the process is dysfunctional and to prevent such problems by providing a framework for training practitioners to deal with these issues.

This descriptive study is an attempt to characterize the field known as clinical ethics, with regard to the function of humanities scholars in the clinical setting, e.g., hospitals and ambulatory care clinics. It is not a strict epidemiological study but a qualitative survey, although it reports some empirical data. Most discussions of medical humanities in the literature are conceptual analyses of particular issues, such as informed consent, abortion, confidentiality, etc. Virtually no empirical studies with data on how many clinical ethicists function in what roles and with what educational backgrounds have been reported. This is the first such study of humanities scholars in clinical ethics and will be followed by companion reports of physicians and hospital chaplains who are, by self-report, involved in clinical ethics. This report is an effort to stimulate and encourage dialogue and is in no way definitive. It is a preliminary study, and other needed studies are already underway.

For the 17 centuries since Hippocrates called for “the most desperate remedies in desperate cases,” physicians have adhered steadfastly to two cooperative goals: to prolong life and to relieve suffering. ut during the past 50 years, mechanical interventions at the edge of life have thrown those aims into dramatic conflict. Cardiopulmonary resuscitation, mechanical ventilation, feeding tubes, and the intensive care unit have postponed physiologic death for many patients who are anencephalic, comatose, or in a persistent vegetative state or prefer death to a life of suffering and pain. Demands from patients' families and cries for social justice have compelled physicians, hospital personnel, and the Supreme Court to analyze concepts long reserved for university philosophers. Although decisions are made daily to withhold and withdraw life support, society is gradually agreeing upon an ethical framework that balances hopeful science with dignified death. This article outlines that ethical framework, reviews recent legal precedents, and suggests practical guidelines for their application.

Say an infant is born with high lesion spina bifida. She is paralyzed from the waist down and has severe wasting of all areas below the waist. She will always be doubly incontinent and will have no normal sexual function. She has hydrocephalus and a brain stem, abnormality (Arnold Chiari malformation) that is likely to significantly shorten her life. She will probably be retarded and epileptic. She has severe leg deformities — dislocated hips, dislocated knees, and club feet. Her hips are held in a constant position over her chest and her knees cannot be bent in the right direction. She has an 80% chance of developing kyphoscoliosis (curvature of the spine) which may ultimately prevent her from, sitting in a wheelchair and may restrict her lungs, causing respiratory failure and death. She has little spontaneous movement and little response to simple stimuli. She has shallow breathing and difficulty in swallowing and sucking. Whatever treatment this infant is offered, she may not survive. If she does survive, her quality of life is likely to be so poor that one might question whether she would want to live such a life.

As hospital ethics committees (HECs) become more common in American hospitals, their degree of success should be measured. Just as new technological procedures are evaluated, institutional innovations should also be evaluated. Currently, little is known about the success of HECs, and some authors have wondered whether these committees serve any useful purpose at all. This article reviews the descriptive results of a 1990 study on HEC success as they pertain to the question of how to measure committee success.

CQ: Do you see the Patient Self-Determination Act as a positive step toward the goals you and the Hemlock Society have been pursuing for many years?

DH: The main value is education; it has impressed on health professionals that the federal government backs right-to-die issues. The federal government did not legislate when you would die or how you would die, but it did say providers must obey state regulations, and if you do not they are going to withdraw our funds. I am a great believer that legislation in needed to back up education. We were enormously pleased to see the Patient Self-Determination Act come into law without much fuss. It is a very useful step.