MEDICAL FUTILITY

For the first three decades after the introduction of life-sustaining medical technology in the 1970s and 1980s, a central question was: When can patients or their families refuse life-sustaining interventions—including interventions wanted by physicians? More recently, an opposite question has been asked and heavily debated: When can physicians unilaterally refuse patient or family requests for life-sustaining interventions on the basis that such interventions would be futile? This debate has shed light on many issues, including the difference between positive and negative rights; the difference between futility and rationing as a basis for denying care; the nature of professional responsibility; and the optimum way to discuss end-of-life choices with patients and their families. In the end, however, futility has remained an elusive concept, and most commentators have rejected unilateral decisions by physicians in favor of good communication and institutional policies for negotiating disputes.

Positive versus Negative Rights

Arguably, the most prominent debate in bioethics from the early 1960s to the early twenty-first century has been the one surrounding the right to refuse treatment. From Karen Quinlan to Nancy Cruzan, the United States has seen a series of court decisions, professional guidelines, and laws that establish the rights of patients or their surrogates to make end-of-life decisions. These cases, however, all involved patients or families who sought to limit life-sustaining treatment in the face of physicians or institutions who wanted to continue treatment. It is simply mistaken to argue that because patients have a right to refuse treatment they also have a right to demand it.

The rights delineated in treatment refusal cases were negative rights, the right to be left alone and to not be touched without consent; such rights can be traced to the Constitutional rights of privacy, liberty, and religious choice, or to the common-law right against battery. In contrast, a positive right, the right that something be done, implies both the patient's right to choose a specific intervention and a coexisting obligation of the physician to provide it (Brett and McCullough). Claims to negative rights are generally considered to be more powerful than claims to positive rights.

It is obvious that patients do not have rights to treatment that falls well out of the standard of care—for example, hip replacement surgery when there is nothing wrong with the patient's hip. But do U.S. citizens have a right to beneficial care? The answer to that question is being hotly debated in the political arena and does not appear to be near resolution. Those in favor of limiting futile care argue that a patient cannot demand a treatment that is futile when a general right to medical care that is clearly beneficial has not yet been established.

Defining Futility

While the word futility has a categorical ring, it is actually quite difficult to define with precision. Futility must always be discussed with a specific intervention and result in mind. Intervention A is futile if it is not successful in achieving goal B. In contrast, intervention A might be successful in achieving goal C. Without specifying interventions and goals, discussions about futility can be misleading or confusing. For example, asking a patient if she would like to be put on a mechanical ventilator identifies a specific intervention, but no goal. One goal might be to stay alive as long as possible, even if this means spending the last weeks of life in an intensive care unit, attached to the machine. Another goal might be to recover, be removed from the ventilator, and return home. Without discussing specific goals, the patient's acceptance or refusal of mechanical ventilation leaves too much to the imagination.

In their 1990 article, "Medical Futility," Larry S. Schneiderman and his colleagues distinguished between the effects of a given medical intervention and its benefits. They argued that "the goal of medical treatment is not merely to cause an effect on some portion of the patient's anatomy, physiology, or chemistry, but to benefit the patient as a whole" (Schneiderman, Jecker, and Jonsen, p. 950). They also stated that futility should be defined within the context of evolving standards of care and that the goal of medicine is to achieve a benefit above a certain minimum qualitative or quantitative threshold.

Quantitative futility implies that the chance of achieving a specific goal, while statistically possible, is very improbable and cannot be systematically produced. Critics point out that physician experience is insufficient to form a consistent and reliable basis for quantitative judgments about futility. Moreover, physicians themselves do not agree about what the threshold should be for quantitative futility (McCrary et al.). Published series of cases are few in number and do not take adequate account of patient variables such as severity of illness or other, co-existing medical problems.

Qualitative futility, according to Schneiderman and colleagues, involves an intervention that may have a good chance of having a specific effect, but the effect provides no benefit to the patient. The problem here is that benefit is a value-laden notion, and patients may not have the same values as physicians (Youngner, 1988). Schneiderman and colleagues' two examples of qualitative futility illustrate this point. Their first example is the state of permanent unconsciousness. A patient in this condition, they argued, has no right to be sustained in a vegetative state. Critics, however, point out that a minority of persons (including a minority of physicians) does see such life as meaningful, and that in a pluralistic democracy it would be wrong for individual physicians to impose their majority values on others.

Schneiderman and colleagues cited patients who require constant monitoring, ventilatory support, and intensive care nursing as their second example of qualitative futility. While acknowledging that sometimes such patients might have worthwhile goals, for example, living long enough to say good-bye to a relative, Schneiderman and colleagues argued that judgment about the validity of the goal should be left to the compassion of the physician. Many would see this as an outmoded and unacceptable form of paternalism.

Thus, while the notion of futility captures an important concern about the harmful overtreatment of patients at the end of their lives, it remains difficult to define with precision. As we will see later, rather than serving as a trump card that physicians can play to unilaterally overrule the wishes of patients and family, discussions about futility may be most useful in stimulating a process of communication and negotiation about setting realistic patient-centered goals.

Futility and Rationing

The notion of futility is often confounded with that of rationing and justified by the need to limit the cost of healthcare. Despite important parallels between the concepts of rationing and futility (both have implications for resource consumption and the cost of care), they have distinct moral and conceptual meanings (Jecker and Schneiderman). Futility represents a clinical judgment that a specific intervention will not be successful in achieving a specific goal for a specific patient. Rationing means that interventions that do provide benefit will be denied to at least some persons who could benefit from them. While it is true that withholding futile care could save money, a treatment is futile whether resources are scarce or abundant. Futility is a judgment based on empirical evidence and clinical experience. Rationing is based on theories of social justice—that is, who is more deserving of limited medical resources. Rationing is a public issue and, in a democracy, should be resolved through the political process. Futility, at least according to its defenders, is an objective medical determination. As such, they argue, it can be defined by physicians. Certainly, in a rational scheme of cost management, futile treatments should be eliminated before beneficial ones are rationed.

Professional Responsibility

Much of the impetus for acting on futility judgments has come from physicians and nurses who think they are violating important professional values—to help and do no harm—when they cave in to demands for futile interventions, such as cardiopulmonary resuscitation (CPR). Physicians are more than body mechanics who follow the orders of patients no matter what the consequences to those patients. CPR, for example, is a very aggressive, but notoriously ineffective, intervention in severely debilitated and dying patients. It involves multiple invasive procedures that often cause tremendous suffering (e.g., broken ribs) and a loss of dignity.

Avoiding Futility Confrontations

Too often, confrontations about futility are the result of poor communication and the conditions under which care is delivered in acute care settings. For example, health professionals sometimes fail to identify and set treatment goals. In their discussions with patients and families, health professionals focus on specific treatment interventions rather than on the goals that such interventions may or may not achieve. Questions such as, "Do you want us to start your heart again if it stops?" or "Do you want to be placed on a mechanical ventilator if you stop breathing?" are confusing, and even misleading, until potential goals of those particular interventions have been discussed and agreed upon.

Medical interventions are not ends in themselves; they are means of achieving desired goals. The job of the physician is first to help identify patients' goals and then to help them select among the treatments that can achieve those goals. For example, if a specific patient's goal is to return home with an independent lifestyle, aggressive interventions such as CPR and mechanical ventilation might well fail to meet that goal. On the other hand, if the patient's goal is extended life, even if its quality is significantly compromised, the aggressive intervention may not be futile at all. Sometimes the most difficult task of the physician is to help the patient and family come to terms with the reality that the goal they seek—for example, recovery and return home—cannot be achieved. Until goals have been understood and agreed upon, conversation about a particular treatment intervention is unlikely to be productive.

Sometimes, patients or families make unreasonable demands for care because they simply do not understand the clinical realities. It is not good practice to ask people if they want to be resuscitated when they do not know that the chances of resuscitation are small (near zero in patients with multiple failing organs) and the harms great (e.g., broken ribs, collapsed lungs). In a 1988 article, Donald J. Murphy reported that only 10 percent of multiply impaired elderly patients in a particular nursing home had "do not resuscitate" orders. A new medical director began informing patients and their families about the seriousness of their medical conditions, the burdens of aggressive intervention, and the small likelihood of success. As a result, twenty-three of twenty-four patients chose not to be resuscitated in the event of cardiac arrest.

Confusion is another reason patients and families demand treatment that physicians think is futile. There is no evidence that physicians agree on what counts as futility. Therefore, a patient or family may well become confused after talking with different physicians, each of whom has a different notion about whether the situation is futile. Moreover, confusion is aggravated by fragmentation and discontinuities in patient care. In large medical centers, patients are often seen by several specialist consultants. Each is responsible for one organ system and may communicate information that does not accurately reflect the overall prognosis of the patient. Communication may be further confused in academic teaching hospitals by the fragmentation of care caused by monthly rotations of medical trainees and supervising physicians, and shift changes for nurses and other healthcare professionals. If patients are lucky enough to have primary care physicians in the community, those physicians are too often not available to coordinate and manage the care of their patients who are in the hospital. The most important strategy for resolving conflicts about care at the end of life is to help everyone involved in a patient's care operate with a common understanding of the realistic medical prognosis and to then focus on the goals of the patient and family that are achievable (Youngner, 1994).

Sometimes, demands for futile treatment grow out of mistrust. Although some people are suspicious by nature, people often have good reasons for mistrust. For example, patients and families may have heard previous predictions of doom that were not fulfilled. Others may have had dealings with physicians who were not straightforward. Socioeconomic and cultural factors may also influence perceptions and attitudes. African Americans, for example, have good historic reasons for mistrusting physicians and the institutions where they receive care. The legacy of the Tuskegee Syphilis Study, during the middle of the last century, remains a part of African-American consciousness. During this study, in which African-American men were enrolled, the researchers left the subjects untreated for syphilis so that the natural course of the disease could be studied. Even today, remnants of racial inequities remain in the U.S. healthcare system. For example, in many urban hospitals, few members of the medical staff and administration are minorities, whereas large numbers of the patients are. In addition, many people who are poor or members of minority groups have inadequate access to healthcare unless they are extremely ill. There is also evidence that minority and lower economic status are associated with preferences for more aggressive care (Garrett et al.). It is little wonder that some persons are suspicious when told by strange physicians in the middle of the night that further life-sustaining efforts would be futile.

Conclusions

There seems to be a growing consensus that futility has not been adequately defined or accepted by the medical community and the public. By and large, courts have rejected the notion that physicians should make unilateral judgments about what counts as a benefit to a patient or what chance is a chance worth taking. Paul R. Helft and his colleagues, in their 2000 article, "The Rise and Fall of the Futility Movement," concluded that a consensus has not been reached regarding the arguments for the supremacy of the rights of physicians or patients/families in judging futility. Instead, many clinicians and institutions have shifted the focus to developing a framework for discussing and resolving futility disputes. For example, some authors have emphasized a preemptive approach in which primary care physicians take responsibility for setting goals and discussing futile treatments before a crisis develops. In both Denver and Houston, community-wide policies have been developed that neither define futility nor give physicians unilateral power to act on their futility judgments (Murphy and Barbour; Halevy and Brody). Instead, these policies outline formal steps for conflict resolution in healthcare institutions.

stuart j. youngner

SEE ALSO: Beneficence; Competence; Health Policy in the United States; Medicine, Art of; Medicine, Profession of; Nursing Ethics; Pain and Suffering; Professional-Patient Relationship; Responsibility; Technology

BIBLIOGRAPHY

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