Ethics

George E. Hardart

Denis J. Devictor

KEY POINTS

Knowledge of ethical theory is necessary to construct coherent justifications for dilemmas in clinical decision making. Foundational ethical theories include those based on consequences, such as utilitarianism, and those based on duties, such as Kantianism.

Legal considerations provide a general framework for decision making but rarely provide a definitive answer to complex ethical questions. The law typically represents the floor, and not the ceiling, of standards of morality.

Informed consent is a process, not an event, and it has four key requirements: competency, disclosure, understanding, and voluntariness.

Competency involves the capacity to understand the therapy in question, consider the risks and benefits, decide on a course of action, and appreciate the consequences of the choice.

The two main standards for surrogate decision making are the substituted judgment standard (choosing what the patient would have chosen, if still competent) and the best-interests standard (choosing what seems to be objectively best for the patient). The former is used for patients who were once competent and who expressed preferences, while the latter is used for patients who have never been competent, including children.

Clinicians should refrain from speaking about withdrawal of care. While treatments may be withdrawn, care is never withdrawn. Care may be redirected from a focus on cure to a focus on comfort.

Distinguishing between treatments that are ordinary and those that are extraordinary is rarely helpful, as determination of whether to withdraw a treatment should be made based on the balance of benefits and burdens, as perceived by the patient, rather than on any particular feature of the treatment itself (e.g., ECMO (extracorporeal membrane oxygenation) may be “ordinary” in one context and “extraordinary” in another).

While clinicians are generally more comfortable withholding a treatment (e.g., tracheal intubation) than withdrawing it, better decisions are made if these events are seen as equivalent, for example, allowing patients to receive trials of therapy with the understanding that the treatment may be withdrawn later if it is not sufficiently beneficial.

Sedatives and analgesics should be administered to dying patients, even if they hasten the patient’s death, as long as they are titrated to the level of the patient’s distress and are administered with the intention of relieving the patient’s pain and suffering, not with the intention of causing death.

Clinicians should be cautious when judging medical treatments to be futile, as these decisions are rarely based entirely on medical factors and usually involve value judgments. Determinations of futility should only be made in the context of a carefully defined procedure that assures due process for the patient and his or her family.

Neuromuscular blocking agents should never be administered at the end of life to patients who have not been receiving them for therapeutic purposes. When life support is withdrawn from patients who are therapeutically paralyzed, the paralytic effects should generally be allowed to wear off before life support is withdrawn.

Today’s practicing pediatric intensivist is likely to face ethically challenging situations with regularity. The climate of the PICU is charged with forces that cause such situations to occur with much greater frequency than in general medical practice. These forces include the availability, power, and cost of lifesustaining technology, the fast pace and inherent uncertainty of treatment decisions, the common occurrence of end-of-life decisions and care, and the subtleties of surrogate decision making for children, particularly as they approach the age where they can begin to decide for themselves.

This chapter begins with an introduction to the history of medical ethics and an overview of the ethical theories that are useful in understanding and framing moral dilemmas, followed by a discussion of informed consent and surrogate decision making. Mastery of these essential concepts is perhaps the most important tool for effectively managing ethically challenging situations. Finally, the chapter includes a comprehensive section on end-of-life care in the PICU. Since one of the most important duties of the pediatric intensivist is to assist patients and families through the dying process, a thorough understanding of this complex issue is required for all who teach and practice pediatric critical care.

THE FOUNDATION OF MEDICAL ETHICS

The terms “ethics” and “morality” are often used interchangeably, but most philosophers draw a subtle distinction between the two. Morality consists of social norms of behavior and often varies dramatically between cultures. The discipline of ethics, on the other hand, involves the development of philosophic reasons for or against a set of moral judgments. Usually, the latter effort attempts to articulate and justify principles that form the foundation for rules of conduct and decision making in the face of competing moral claims.

Medical ethics is the discipline devoted to the identification, analysis, and resolution of value-based problems that arise in the care of patients. It is a special kind of ethics only insofar as it relates to the peculiar dilemmas that arise in medicine, not because it embodies or appeals to some special moral principles or methodology. The term “bioethics” is often used interchangeably with “medical ethics,” although the former has a slightly broader meaning, including ethical problems that arise
outside of the area of medicine (e.g., issues surrounding research on animals). In summary, the practice of medical ethics seeks to identify and resolve competing moral claims among patients, their families, healthcare professionals, healthcare institutions, and society at large.

The Development of Medical Ethics

Concern for ethical issues in medicine dates back at least to the time of Hippocrates. Nevertheless, until the middle of the 20th century, little additional thought was given to the unique problems that arise in the context of clinical practice and medical research. The revelations of the Nazi atrocities after World War II led to the reaffirmation of the importance of ethics in medicine and research and were directly responsible for the formulation of codes of ethics pertaining to research on human subjects (e.g., the Nuremberg Code in the late 1940s, followed by the Declaration of Helsinki in 1964).

In the decades following World War II, the development of antibiotics, vaccines, and effective diagnostic therapeutic technologies transformed medicine from a profession that focused on caring to one that focused on curing. The expectations of physicians and patients have grown considerably; yet, medical advances have brought with them ethical dilemmas that increasingly find their way into public and professional consciousness.

Publication of a 1962 LIFE magazine article entitled “They Decide Who Lives, Who Dies” presented such an event. The article described the efforts of a committee of ordinary citizens, not physicians, in Seattle who were charged with the task of allocating access to hemodialysis therapy (then a scarce resource) for critically ill patients who would die without it. The committee disbanded itself after it realized that its selection process was influenced by its own middle-class values rather than by an objectively fair allocation procedure. Public—and then Congressional—dismay at the reality of scarce but effective medical technology led to the 1973 passage of the endstage renal disease program. Under this legislation, the Federal Medicare Program assumed responsibility for anyone in need of chronic dialysis, regardless of socioeconomic status. Like many federal initiatives in the 1960s and 1970s, this program has proven to be far more costly than initially expected and serves as a lasting illustration of the pitfalls inherent with using governmental assurances of payment as a means for solving problems of medical scarcity (1).

The medical profession’s attention to these issues was further heightened by a 1973 article in the New England Journal of Medicine that described the decision by physicians and parents to withhold treatment from 43 critically ill infants in the neonatal ICU at Yale-New Haven Hospital (2). This account was among the first to bring attention to the fact that medical technology had reached a point at which the decision to end life had to be made deliberately by physicians and families.

Perhaps no event captured public and professional attention to these difficult issues more than the 1976 New Jersey Supreme Court decision on Karen Ann Quinlan. On the night of April 15, 1973, this 21-year-old woman experienced a respiratory arrest that left her in a persistent vegetative state. Her father petitioned the court for authority to be named as her guardian and for permission to discontinue the ventilator. His request was opposed by her doctors, the hospital, and the prosecutors for the local county and the state of New Jersey. The New Jersey Supreme Court ruled that the patient had a constitutional “right to privacy” to be removed from the ventilator if the family, the physicians, and the hospital ethics committee agreed. Despite the prevailing opinion of her doctors, she did not die when removed from the ventilator, but lived for almost another decade. This was the first of many cases that helped to shape our current views about the withdrawal of life-sustaining treatments.

Overview of Ethical Theories

Broadly speaking, two ethical theories—utilitarianism and deontology (or Kantianism)—have dominated Western intellectual tradition. Both theories attempt to provide a set of “first principles” for approaching ethical conflict. More recently, a number of alternative theories—some ancient and some new— have emerged as useful tools for analyzing complex ethical decisions. Perhaps the best known of these has come to be known as principlism, but several other theories offer unique and powerful perspectives and will be described in this section.

The Utilitarian and Deontological Theories

English philosophers Jeremy Bentham and John Stuart Mill developed the utilitarian philosophy in the 18th and 19th centuries. Utilitarianism is rooted in the thesis that an action or practice is right (when compared to any alternative action or practice) if it leads to the greatest possible balance of good consequences or the least possible balance of bad consequences in the world as a whole. According to this view, moral codes and traditions are designed to promote human welfare by maximizing benefits and minimizing harm.

The other dominant ethical theory, deontology, was heavily influenced by the writings of the philosopher Immanuel Kant. According to this approach, consequence is rejected as the first principle; Kant argued that actions should be guided by generalizable moral obligations or duties, regardless of consequences.

The ongoing debate about euthanasia illustrates the differences between these approaches. Utilitarians may argue, for example, that when a terminally ill patient requests to be killed, the consequences of complying with that request are favorable for everyone concerned. The patient’s desires are satisfied, the physician can rest assured that the act was in the patient’s best interest (as defined by the patient), and even society may benefit by not incurring the expenses associated with a prolonged dying process. Deontologists, on the other hand, feel that the prohibition against killing should stop us from taking the life of another, regardless of the consequences. Under this approach, euthanasia is always wrong, even if we are convinced that carrying it out does not harm anyone’s interest. Some deontologists base their beliefs on a religious perspective (the Ten Commandments are a typical list of deontological principles), whereas others derive a set of duties and obligations by theoretical analysis. Even utilitarians often agree that rules have an important place in ethics, if only because of the inherent difficulties involved in predicting the consequences of our actions. To use the euthanasia example again, a deontologist might argue that even though performing euthanasia does not appear to harm anyone’s interest, the long-term consequences of permitting this act might be diminishment of our respect for human life and possible eventual erosion of the core values of the medical profession. This argument would be a reason to oppose euthanasia, even by the utilitarian standard.

Principlism

In reality, few people are pure deontologists or consequentialists. Most of us blend these two perspectives (as well as others) in our reasoning about ethical issues. In the search for practical guidance to moral dilemmas, therefore, leading ethical theorists over the last 30 years have turned instead to a “principles approach” to moral reasoning. For example, in what is widely regarded as a classic textbook on modern medical ethics, Tom Beauchamp and James Childress advocate four

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