Moral Theory

Medical ethics does not constitute a completely independent field. Most persons think of medical ethics as an applied discipline of the wider branch of philosophy that is ethics. Like most other intellectual pursuits, ethics has developed according to several theoretical traditions. In Western ethics, two particular ways of thinking have dominated for some time. Because these approaches may yield rather different perspectives on some questions, they deserve mention.

Consequentialism

One tradition, known as consequentialism, examines the correctness of an action according to what effects the act will likely have on the real world. Good actions produce the most favorable ratio of happiness, pleasure, or some similar value to unhappiness or a similarly disvalued result. The utilitarian philosophers Bentham and Mill enjoined us to seek the greatest happiness for the greatest number of individuals possible. These theories emphasize the social nature of human moral action, requiring calculation of the consequences of an act. Only after determining the impact of an action for those directly and remotely involved can a person pronounce ethical judgment.

Deontology

The other main approach to moral theory proceeds from different premises. Deontology (from the Greek word for duty) holds that some actions have intrinsic moral worth. Many religious moral rules conform to this view. Hence the Ten Commandments pronounce that we should not kill. Other approaches, such as Kant’s categorical imperative, also proclaim universal truths and rules that persons should honor irrespective of the consequences.

A consequentialist might claim that removal of organs from persons in a persistent vegetative state does not harm the individuals because they can no longer experience meaningful life, or even hunger or thirst. The consequentialist also might assert that harvesting the organs best serves the class of patients in a persistent vegetative state because, overall, transplantation fosters the well-being (and by implication, happiness) of humans who can actually benefit from continued treatment. Some deontologists, however, surely would argue that the killing that necessarily results from the removal of vital organs, no matter what the intent, undermines human dignity and is morally impermissible.

Prevailing Principles

Despite the “opposing” traditions of ethics, most persons in medical ethics agree on a small number of important principles that should guide medical behavior. The reader should note, however, that narrow adherence to these notions encourages an oversimplified approach. Medical ethics neither begins with nor ends with the principles named here. A more nuanced view includes many more considerations and a clear sense of how different ideas interact, especially how some moral duties conflict with others. Nevertheless, a few guideposts may help intensivists understand that medical ethics, like clinical medicine, uses formal logic and has a recognizable structure.

Beneficence

The first principle, beneficence, demands that physicians provide care that benefits the patient. This principle may seem self-evident until you remember that many potential conflicts of interest can influence medical decisions. For example, parents of children may face tragic choices about the support of a sick child whose survival could endanger the economic or psychological integrity of the rest of their family. Other conflicts may involve doctors, especially those in a fee-for-service system, who benefit financially from providing services that promise only marginal, if any, additional benefit.

Nonmaleficence

Beneficence contrasts with nonmaleficence. According to this notion, doctors have a duty to avoid harming patients. Again, the idea may seem obvious, but the practical application involves considerable complexity. For example, when deciding whether to use extracorporeal membrane oxygenation for a desperately ill infant with a diaphragmatic hernia, you must consider the possibility that the technology will extend the life of the baby only by several days but may cause discomfort to implement and maintain; that is, no long-term benefit will accrue to balance the burden of the procedure. Similar reasoning might apply to cases of malignancy for which chemotherapy and other treatments have no or little likelihood of producing a cure or substantial life prolongation, whereas the treatments impose burdens, such as nausea, itching, extreme fatigue, and high risk of infection. The principle of nonmaleficence reminds us to take potential pain and suffering seriously before recommending no-holds-barred medical intervention.

Autonomy

When considering which medical treatments will best help a patient and what harms to avoid, a natural question arises: whose perspective should we use? The principle of autonomy suggests that we must respect individual human differences. To the extent possible, persons should decide for themselves what is in their own best interests. In pediatrics, respecting autonomy can present difficult questions about when children develop the capacity and independence to accept or refuse recommended treatment. The autonomy principle reminds us that individuals or their families often have different values and goals from those of their physicians. Medical decisions usually should be in accordance with the patient’s or family’s perspective.

Justice

The fourth principle, justice, provides some of the most pressing and challenging dilemmas for modern medical care. Put simply, this principle exhorts us to use our services fairly, that is, to avoid decisions that accept or reject candidates for treatment based on factors that are irrelevant to their medical situation, such as poverty. The application of the justice principle runs into two major obstacles today. First, members of our society seem to have a great deal of difficulty agreeing on what constitutes just or fair allocation of medical resources. Second, we have not yet decided exactly how considerations of justice should affect the medical care system.

Medical goods can be distributed, assuming not everyone can have everything, according to a number of different schemes: based on the likelihood of success; by some definition of need (urgency, desperation); as a reward (for past achievement, for waiting the longest, for future contribution); by equal shares; by random assignment until the goods run out; or, as we often do in our society, by ability to pay. Different philosophical and political traditions support each of these approaches, and we seem far from agreeing on which is best.

With respect to the second issue, some persons urge physicians to ignore financial constraints to do everything “medically indicated” for patients, regardless of the economic consequences.¹ The argument is that, at least for decisions about individual patients, physicians discharge their fiduciary responsibility only by advocating the best, even if most expensive, care. Macroeconomic concerns, regional and institutional issues, and microeconomics challenge this view.

From a macroeconomic perspective, our society resists increasing medical spending as an ever-increasing proportion of total social expenditure (such as percent of gross domestic product). Most Western industrial countries spend on average 9% of gross domestic product on health care. Does the United States get incrementally better outcomes for its 15% or larger outlay?² By many measures of public health (e.g., infant mortality and longevity), the well-being of the U.S. population does not reflect our high medical expenses.² Similarly, does the way we spend our health care dollar make the most sense? Should we spend great sums of money on expensive intensive care at the end of life for patients with little likelihood of benefit? In pediatrics, we have reason to believe that preventive measures (e.g., immunization and accident prevention) reduce morbidity and mortality rates^3–5 and, in some cases, save money.^3,4

Regional and institutional economic questions involve matters such as consolidation of care to increase economic efficiency and medical efficacy. However, political and psychosocial factors often lead to duplication of services and diffusion of experience. Certain programs may even create conflicts of interest. For instance, a hospital could offer a particularly scarce and expensive service (e.g., extracorporeal membrane oxygenation or pediatric organ transplantation). The costs of the service might be so high that just a few patients treated “free,” that is, without charge to the family, might threaten the economic stability of the enterprise. Such fiscal concerns surely help shape what services institutions offer and the way those services become available (are “marketed”) to those in need.

With respect to microallocation, intensivists frequently engage in decisions about the distribution of specific services to particular patients, sometimes with clear awareness that competition exists under conditions of scarcity. With a nearly full ICU and a large demand for postoperative care for the cases on the next day’s operating room schedule, intensivists often must negotiate and juggle, trying to meet varying claims about who should occupy scarce beds and receive nursing attention. Even the decision to use one vasoactive drug or antibiotic instead of a far more or less expensive agent requires an attempt to balance expected benefit against drains on resources. It seems inappropriate to demand that physicians ignore such actual conflicts. Intensivists, like other practitioners, rarely enjoy the luxury of having a single duty to a single patient with an unlimited ability to pay for services. Although doctors might prefer to leave economic considerations to policymakers and the marketplace, justice issues do find their way into ICU routines.

The challenge for the pediatric intensivist involves applying the various ethical principles and perspectives to individual cases and to policies that affect how the unit operates. The following sections focus on a few topics where ethical concerns arise frequently.

Competency

Legal entitlement does not mean the proposed decision maker actually is competent, whether referring to the child, a parent, or other guardian. More accurately, we should regard competency as a legal determination, and physicians must assess the decision-making capacity of the patient or surrogate. This capacity has several features and elements. First, capacity to make medical decisions involves specific determinations for each “significant” decision. A patient or surrogate may have appropriate capacity to accept, in general, medical efforts to prevent death from fulminant hepatic failure. However, the patient’s agreement to accept intensive care does not provide a warrant for the doctors to proceed directly to liver transplantation. The proposal of the latter treatment should trigger a separate exploration of the decision-maker’s capacity to agree to transplant surgery. Similarly, decisional capacity refers to specific kinds of decisions. If a parent cannot balance his or her checkbook or pay medical bills on time (because of a lack of understanding of what is involved, rather than a lack of funds), it does not follow that such a parent cannot rationally refuse mechanical ventilation for a son or daughter with a degenerative neuromuscular disease. Further, disagreement with a medical opinion does not, in and of itself, constitute grounds for declaring a patient or surrogate incapable of making sound choices. Rejection of medical recommendations may trigger concern about mental abilities, but such disagreement does not establish the case that the decision maker lacks decision-making capacity.

Although not everyone agrees on how to define medical decisional capacity, most persons accept the notion that it involves (1) an ability to understand and communicate about the medical situation at hand, (2) an ability to manipulate information about the situation and deliberate about the nature and consequences of alternatives, and (3) an ability to make a choice among the alternatives, preferably based on relevant values.