The dilemma of "medical futility" - a "wisdom model" for decisionmaking.

• Author: Reitman, James S.

The rise of the patient advocacy movement of the 1960s and '70s, along with the resulting advent of ethics committees and advance directives legislation, can be traced to growing concern over physician exuberance to employ life-prolonging technology in clinical situations considered futile by patients and family.(1) Requests that such therapy be withheld or withdrawn are now commonplace as a result of a large body of case precedents establishing the "acceptability" of abating these attempts to prolong life.(2) However, such widespread acceptance is far from solving the problems of over treatment at the end of life. Daniel Callahan appropriately notes:

Doctors still do not, as a rule, talk comfortably and directly with patients about death. . . . A worry about malpractice, a zest for technology, a deep-seated moral belief in the need to prolong life, and the pressure of families and others still often lead to overtreatment and an excessive reliance on technology.(3)

In fact, a general acceptance of the "technological imperative" by the American public in the 1990s has led to the reverse problem of so-called medical futility, referring specifically to those situations in which patients or their surrogates request or even demand life-prolonging therapy that physicians are convinced is not medically indicated.(4)

The Evolving Ethical Implications of "Medical Futility"

Callahan offers keen insight as to how such a problem could have developed so close on the heels of the patient advocacy movement, with its emphasis on the limitation of life-prolonging technology:

Futile medical treatment is indeed ordinarily not wanted, but useful treatment is wanted ... except that useful, treatment is interpreted in such a broad fashion that it is often wanted even when its utility is highly marginal, and when the quality of life it provides is slight to vanishing. For practical purposes, it is this desire for useful treatment, however slight in value, that is most important, not the rejection of futile treatment. . . . Given the growing effectiveness of medical therapies at the margin of life and death, and the increased difficulty of pinpointing the line between living and dying, medical and lay ambivalence and uncertainty are necessarily intensified.(5)

Thus, while technology has greatly improved our ability to prolong life in the face of severe illness, it has also increased our uncertainty over when such life extension is meaningful,(6) for often it is only one's dying that is prolonged by

[t]echnological brinkmanship ... that is, pushing aggressive treatment as far as it can go in the hope that it can be stopped at just the right moment if it turns out to be futile. That brinkmanship, and the gamble it represents, can both save life and ruin dying, this is the dilemma it poses.

... We must reckon whether it is a good or a bad gamble, and how much we are prepared to accept a deformed dying as a result.(7)

Conflicts may arise when care providers do not agree with patients or their families that requested therapies are in fact "good gambles" and resist such requests on the basis of medical futility. Apparently, then, it is not the advances in technology per se, but rather difficulty discerning the expedient use of such technology, that has led to dilemmas of "medical futility." Such conflicts may even escalate to the level of a power struggle, especially when autonomy-based claims to the right to receive "futile" medical care are taken to court and pitted against efforts to protect the professional prerogative of physicians to restrict "acceptable" care to therapies that are "medically indicated."(8) A line of cases is now emerging from such disputes and testing the scope of care physicians may be obligated to provide at the "edges" of life when aggressive application of life-prolonging therapy seems medically futile.(9)

Prevailing Paradigms of "Medical Futility"

Two cases in particular -- involving anencephaly at one extreme and the so-called persistent vegetative state (PVS) at the other -- have underscored perhaps better than any other the high stakes involved in the outcome of the debate, as well as how divisive such power struggles can become. Baby K was born in October 1992 with anencephaly. Following prenatal diagnosis, the mother refused abortion, and her physicians initially agreed to provide full medical support at birth, including mechanical ventilation. Despite many subsequent attempts to convince the mother of the uniformly fatal outcome of anencephaly, she continued to demand full supportive care on the basis of firm religious convictions. Convinced that such care was futile, an ethics consultation team failed to resolve the dispute and advised the hospital to pursue legal remedies. Assisted by disability advocates, the mother secured an agreement with the hospital: After weaning from the ventilator, the baby would be transferred to a nursing home and allowed to return to the hospital for treatment of recurrent respiratory difficulty. However, with the third such readmission the hospital filed a proceeding in federal court to determine its legal obligation to render care. The court of appeals ultimately ruled that ventilatory support was mandated by the Emergency Medical Treatment and Labor Act (EMTALA), since respiratory arrest -- a medical emergency -- was the condition being treated, and not anencephaly. Baby K finally died in April 1995, thirty months after birth, the longest known survivor of this condition.(10)

Helga Wanglie was an eighty-five-year-old woman with lung disease who broke her hip and required mechanical ventilation. She was ultimately transferred to a chronic care facility, where she sustained anoxic brain damage after a cardiac arrest; this led to prolonged mechanical ventilation and other intensive care. Her husband was convinced that she would not have arrested if she hadn't been moved, and he resisted all attempts by physicians, ethics consultants, and even his own pastor to convince him that continued intensive life support might not be appropriate. Six months later, when it became clear that she would remain in a persistent vegetative state, the attending physician announced he was no longer willing, to continue ventilator support. The husband invoked the sanctity of life and rejected proposals to transfer his wife, insisting that she had wanted full life support continued. When the hospital sought court appointment of an independent conservator to decide whether such treatment was beneficial, the family tried but could not find another facility that would treat her, Although the husband cross-filed and succeeded in obtaining the conservatorship himself, Mrs. Wanglie died three days later -- despite continued aggressive care -- fourteen months after her cardiac arrest.(11)

There is growing apprehension that the outcome of these cases will unleash a proliferation of legally sanctioned "futile treatments." One possible result of such "court-ordered" accession to requests for futile treatments could be to enable false hopes of cure that would only further aggravate the already pervasive loss of dignity in dying. Physicians worry, moreover, that an inordinate faith in technology, together with the growing consumerism plainly evident in evolving American health care, may threaten the integrity of the medical profession by preempting the physician's prerogative to decide if and when medical therapy is indicated.(12) Finally, societal unease is increasing over the skyrocketing costs of health care, which show no sign of abating in the absence of clear-cut guidelines for the judicious stewardship of health care resources,(13) and concern is growing that expenses incurred in the proliferation of cases like Baby K and Wanglie will lead to an unfair redistribution of these resources away from benefits that should justly accrue to other contributing members of prepaid managed care plans.(14)

These concerns have led some to call for societal or professional consensus on those conditions for which life-prolonging therapies can be considered futile,(15) in order to justify instituting "futility policies" to limit such "medically futile" care.(16) This article will elucidate the pitfalls of such attempts, as well as the inadequacies of the prevailing rights-based framework for decisionmaking in cases of medical futility.(17) Just as in the Wanglie and Baby K cases, any exploration of the real motives at the crux of requests for medically futile care is subordinated to the issue of whose rights and which correlative duties should prevail. Consequently, we will explore an alternative framework that is capable of identifying and addressing the often obscured moral and existential issues that drive requests for futile treatment, as well as caregiver resistance to such requests.

Disparate Perceptions of Futility: What Futility? Whose Meaning?

A burgeoning literature has emerged over the last six years debating various definitions of futility and attempting to cover every possible nuance of futility that might be encountered clinically. Such definitions usually include both qualitative and quantitative criteria.(18) Yet there remain significant conceptual barriers to an ethically sound way of arriving at legal, professional, and/or societal consensus over those conditions for which certain therapies may be considered futile and therefore withheld.

Qualitative Futility. Qualitative futility is tested when care providers judge whether a given outcome is medically meaningful -- such as the restoration of cognitive function, transfer out of intensive care, or survival to hospital discharge -- then whether such an outcome is medically feasible. Thus a given therapy is said to be futile either when the goal itself is not considered worth pursuing (such as prolonging life with ventilatory support in an infant with anencephaly like Baby K) or when it cannot achieve the desired outcome (such as...