Of the four principles of bioethics as enumerated by Beauchamp and Childress (autonomy, beneficence, nonmaleficence, and justice), autonomy tends to get the most attention from bioethicists. A central feature of the principle of autonomy is the right to refuse treatment, and the courts have consistently upheld the right of competent adult patients to refuse treatment. Even patients who are severely obtunded or unconscious have the right to refuse treatment through an advanced directive or a surrogate. The right of doctors to refuse to provide treatment, for any reason, is generally recognized as well as no one can compel a doctor to enter a contract. Even when doctors have agreed to enter a contract with a patient, they can choose to terminate the relationship. Problems arise when doctors refuse to provide treatment for patients who are no longer able to seek other health care providers. When doctors do this, they usually claim the treatment is inappropriate or futile. I will claim that the concept of futility is only useful when a treatment is known to be ineffective for achieving the goals of the patient and should not be used to resolve conflicts between patients and physicians. In cases of conflict, what is referred to as “futility” generally either involves a quality of life judgment or a cost/benefit judgment. The use of the word “futility” obscures significant ethical and legal issues that should be confronted in a forthright manner.
Some treatments are clearly inappropriate. If a patient demanded pectoral enhancement as a treatment for his tennis elbow merely so he can claim his cosmetic surgery on his insurance, the doctor would likely, one would hope, tell his patient to accept a reasonable treatment or find a new doctor. Even in cases where the patient does not ask the doctor to participate in fraud, the doctor may not wish to provide a particular treatment for various reasons. A surgeon may not offer a patient any other treatments than surgery, not because the treatments are inappropriate in themselves, but because it is inappropriate for a surgeon to provide treatments better administered by a non-surgical specialist. The problem of a doctor’s refusal to provide treatment typically only arises in cases where the patient cannot easily find alternative treatment and is near death. The doctor’s refusal to treat is a death sentence, and doctor’s in such cases will typically justify their refusal by claiming medical futility. I assert that in such cases, discussion should focus on the actual issues of the quality of life of the patient, cost of the treatment, and the likelihood that the patient might benefit from the treatment. Simply declaring a treatment futile obscures the value conflicts inherent in any conflict.
There are three classifications of medical futility: physiologic futility, qualitative futility, and quantitative futility. Cases of physiologic futility are the least controversial as they entail a patient requesting a treatment that is known to not be effective for the patient’s condition. Jerry Menikoff gives the example of a patient requesting an antibiotic for a viral infection, which would not respond to antibiotics. While antibiotics will have a physiologic effect, it is an effect desired by neither the patient nor the doctor. In other cases, however, the goal of treatment is not so clear. Qualitative futility is more controversial; on occasion a patient or the patient’s family will request a treatment that may achieve the patient’s physiologic goals while the doctor feels the patient’s condition is too poor for the patient to benefit from the treatment. These cases tend to center on quality of life judgments, even when no one will admit to it, and can be extremely controversial. With quantitative futility, a patient is requesting a treatment that has a slim chance of being effective. The doctor may feel that the chance of benefit is too low to justify the expense.
In re Wanglie is a case of a woman eighty-six years old (Helga Wanglie) who fractures her hip, suffers a respiratory arrest, and becomes ventilator dependent. She later suffers a cardiorespiratory arrest and falls into a persistent vegetative state. Her husband, Oliver Wanglie will not agree to cessation of treatment in spite of the opinion of her doctors that her treatment provided no benefit to her. It is clear that her doctors did not feel her quality of life was worth sustaining. Rather than arguing before the court that the hospital was not obligated to provide treatment that provided no benefit or that her life was of insufficient quality to prolong, the hospital sought to have Oliver Wanglie declared incompetent to make decisions about her medical care. As a result, the the court did not address questions of benefit and quality of life. The opinion by Judge Belois stated, “No Court order to continue or stop any medical treatment for Helga Wanglie has been made or requested at this time. Whether such a request will be made, or such an order is proper, or this Court would make such an order, and whether Oliver Wanglie would execute such an order are speculative matters not now before this court.”
The Wanglie case raised complex issues with no hope of resolving them. Claiming that Oliver Wanglie was incompetent only directed attention away from the issue of non-beneficial treatment. Had the court been eager to make a decision regarding physician autonomy or a patient’s right to non-beneficial treatment, it would have been frustrated in its desires. Judge Belois’s comments suggest the court may have felt eager to make a more definitive decision. At the least, the court was frustrated by the claim of the hospital. In addition to preventing any kind of court decision on futility, the hospital alienated the family of Helga Wanglie. The hospital had argued that her treatment was not beneficial to her not to show that it was not obligated to provide treatment but to claim that any conservator disagreeing with its judgment was not competent. In addition to alienating the family of Helga Wanglie, the publicity of the case likely made members of the public less trusting of the decisions their doctors or hospitals might make.
In an analysis of the case and of medical futility, Daniel Callahan argues that a joint lay-medical process should be developed to help resolve disputes before going to court. He says, “I happen to agree with [the Medical Center’s] judgment. But I also believe we should not override the moral values of the Wanglie family, whose judgment is different from both mine and the Medical Center. To allow the judgment of the Medical Center and its staff to triumph over that of the Wanglie family before a joint lay-medical process has been developed to make the combined medical-moral judgments is at least unwise and perhaps unfair.” While Callahan is correct to point to the complexity of the problem and suggest more attention be paid to joint decision-making, it is not at all clear that a lay-medical process would have resolved the issue. Nonetheless, more communication and respect for the beliefs and desires of patient’s families is always welcome and is often imperative.
The hospital did not describe Helga Wanglie’s treatment at futile. It refrain from claiming futility in light of the fact that the respirator could indeed prolong her life. Rather, the hospital claimed the treatment offered her no benefit. In actuality, the hospital had made a quality-of-life judgment and determined that Helga’s life was not worth prolonging. While it could be argued that saying her treatment offered her no benefit is tantamount to saying her quality of life is so poor that it is not worth living, a direct statement of the actual issues involved would, at least, promote legal and public discourse on whether physicians (or taxpayers) should be required to expend resources on someone whose life is deemed of no value by her physicians.
Another case that involved a claim of medical futility but did not yield a legal opinion on futility is the case of Causey v. Francis Medical Center. Sonya Causey was transferred to St. Francis Medical Center after suffering a cardiorespiratory arrest at a nursing home. She was a quadriplegic who was comatose and in end-stage renal failure. Her physician did not feel she would benefit from dialysis in spite of the fact that dialysis and ventilator support could keep her alive for another two years. The physician’s opinion rested on the fact he felt the treatment was quantitatively futile as she had only a one to five percent chance of regaining consciousness. The court in this case spent a fair amount of time discussing the concepts of futility in its opinion, authored by Judge Brown, but ended up concluding only that the case must be submitted to a medical review panel as the Medical Malpractice Act was applicable.
This case differed from Wanglie in significant ways. The action was brought by the patient’s family rather than by the physicians, and the physicians had argued that treatment offered no benefit to Sonya as it was quantitatively futile. The physician in this case attempted to find an alternative medical center to provide the treatment and consulted with the hospital’s ethics board. What was not stated clearly but was almost certainly a consideration was the cost of the treatment. The physician, Dr. Harter, claimed dialysis was not worth offering as Sonya had only a one to five percent chance of regaining consciousness by his estimate. If one of twenty people would regain consciousness by administering a treatment costing 10 dollars each day, few health care providers would deny the treatment.
Judge Brown’s opinion remarks that futility in this case is a matter of subjective value. It is clear that Sonya’s life was worth much more to the Causeys than to Dr. Harter. Judge Brown notes that arguments regarding the definition of “futility” result in polemical discussions, so the court turns instead to standards of medical care. Many ethicists feel that following the standard of medical care is the best guide to handling cases of futility when disagreements arise between physician and the patient or patient’s family. This is the approach Eric Gampel supports. He says,
“Health care providers need to follow norms established in the medical community regarding appropriate care: norms defined by a combination of actual medical practice, expert opinion, laws, and explicit guidelines promulgated by professional societies. So if there is argument for health care provider’s refusal of futile treatment, it is grounded not in the self-governance of individuals, but in the self-governance of the medical community.”
Gampel’s suggestion would give physicians a sense of physician autonomy while also preventing rogue physicians from denying appropriate care without fearing any consequences. However, it is likely that patients might feel distrust of the medical community to govern itself, especially in the wake of publicity from cases such as Wanglie. Callahan’s suggestion of a lay-medical process for establishing overall guidelines rather than resolving individual cases might help both patients and physicians feel a sense of autonomy, even if the autonomy is collective rather than individual autonomy.
While it is unlikely that consensus could be reached on every case where quantitative futility is asserted, a plurality of opinion of a representative group of lay and medical individuals might help avoid some confusion facing physicians and patients. Once again, the issue will be less confusing if the language of futility is avoided all together. This case is better presented as a cost/benefit analysis of the treatment given the probability of a desirable outcome. If this language sounds too blunt and offensive, it is only because the language of futility is the language of subterfuge and obfuscation. It does not appear that Dr. Harper mentioned the cost of dialysis to the Causey family, but it is impossible to imagine that cost was not a motivating factor for his decision.
One of the most discussed cases of futility in bioethics literature is In re Baby K. In this case, the hospital sought a declaration from the court that it was not required under the Emergency Medical Treatment and Active Labor Act (EMTALA) to provide more than warmth, nutrition, and hydration to an anencephalic infant. In this case, the hospital claimed that any care beyond so-called “comfort” care was futile, as it provided no chance of medical recovery for Baby K. Unlike the Causey case, where the chance of regaining consciousness was estimated to be between one and five percent, the chance of physiologic improvement for an anencephalic infant is zero percent. The hospital argued that the standard of care for infants with anencephaly was to provide only warmth, nutrition, and hydration. In this case, “futility” does not disguise the actual concerns of the health care providers. Although Baby K’s mother is an obvious exception, few would dispute the claim of physiological futility in this case, but a conflict of values is still present.
Baby K’s mother is an exception because her religious beliefs place a value on all human life, no matter how limited that life may be. Ms. H holds the sanctity of life principle, which prohibits anyone from killing a patient or letting a patient die. Stephen Post argues that we must respect the sanctity of life view even when a case is futile and expensive. He says:
“A religious rejection of medical futility judgments is neither sufficiently harmful nor socially repulsive to warrant the restriction of freedom, except when the burdens of treatment for the patient are clearly inhumane (that is, cause pain and suffering). While I lament overtreatment of Baby K, such treatment does not thwart the purposes of civil government, such as peace and tranquility, articulated in the Preamble of the Constitution.”
He argues that refusal to respect the religious liberty of patients and their families trivializes religious belief. Although he sets the question of cost aside in the beginning of his essay, Post eventually discusses the difference between asserting a negative right such as when a patient rejects treatment on religious grounds and asserting a positive right as Ms. H does with Baby K. If someone has a positive right to any treatment called for by religion, then society must be forced to provide the treatment. Post confounds the issue somewhat by considering the possibility of special (and more expensive) insurance pools for those holding the sanctity of life view. If the economic burden is shifted in this manner, it is no longer a matter of asserting a positive right, it is a libertarian concern of making free trades in an open market; one receives the treatment one can afford.
Post further confuses the issue by asserting, “No physician who dissents from ventilator support in the name of futility should be required to act against his or her personal convictions. The freedom of physicians also deserves respect.” It is quite likely that Ms. H would not find any physician willing to provide treatment to Baby K. If her religious freedom is respected along with respect for the doctor’s autonomy, the case will end up in court just as it did. Post is somewhat convincing in his argument that religious convictions ought to be respected and taken seriously, but he leaves us without resolution to the issue of treatment in a clear case of futility.
Alexander Morga Capron takes quite a different approach to the Baby K case. Capron argues that futility is not a necessary concept to curb patient autonomy in any circumstance, as patients do not have the right to demand treatment of physicians. With regard to Baby K, he says decision to provide medical intervention must “always involve the complete circumstances of the patient and the treatment setting. This principle applies as much to emergency treatments as to any other, and it can only be hoped that if other courts fail to incorporate this understanding into their interpretation of EMTALA, Congress will clarify that the act is intended to outlaw discrimination against poor patients, not command that patients be equated with their symptoms and be provided with every medical intervention known to have any physiologic effect on those symptoms regardless of the prospect of truly benefiting the patient.” He claims that use of the word “futility” is a way of hiding what is usually a value judgment; the quotation just cited refers to treatments that offer no chance of improving the patient’s chance of survival for more than a short time. A treatment that offers no hope of improving the medical condition of the patient is a case of physiologic futility, but a value judgment has entered the discussion once again. While there is a conflict of religious value in this case, there is no conflict of opinion of whether treating Baby K will cure her anencephaly. The court differed from the physicians in its opinion because it considered apnea to be the presenting condition rather than anencephaly. In this case, the doctors did not want to refuse treatment because they did not value Baby K’s life; they refused treatment because they felt Baby K had no life to value and that treatment provided no chance of recovery or improvement. Ms. H, however, valued any life of her baby, no matter what its limitations.
In 1999, Texas became the first state to address the problem of futility legislatively through the Texas Advance Directives Act. Under this law, when a health care provider wishes to withdraw or withhold life-sustaining treatment against the wishes of a patient or the patient’s family, the provider must follow several steps. The family must be notified of the decision and the provider’s ethics consultation process, the family must be invited to participate in the process, and the hospital must try to arrange transfer of the patient to a provider willing to continue the treatment. If the provider is able to find other providers willing to offer the treatment, then the provider is obligated to continue treatment until the transfer can be arranged. If no alternative provider can be found after 10 days, the provider may withdraw treatment against the wishes of the patient or the patient’s family.
Although people will sometimes refer to the Advanced Directives Act as the Texas futility law, the law avoids discussions of futility and essentially leaves the question to the standard of medical care in Texas. If any facility can be found that will accept the patient and offer requested treatment, then the treatment must be offered; only when no facility can be found may treatment be withdrawn. In a case such as Baby K, it seems unlikely that an alternative facility could be found, and the standard non-treatment of anencephalic babies would be supported by the law, an outcome quite different from the actual case. In 1995, Texas Children’s Hospital sought to withdraw treatment from Sun Hudson, who was born with a fatal form of dwarfism. This became the first case in which a judge permitted a hospital to discontinue care over the wishes of a child’s mother. As a result of a procedural error and appeals, Hudson’s care was extended four months after the judge made the initial decision.
While the Texas law has been criticized for some procedural issues, many in the medical community are relieved to have some legal definition for when care may be withdrawn or withheld. The law does not make exceptions for those who believe in the absolute sanctity of all life, and will most likely face challenges from vitalists for as long as it is in effect. The law requires a registry of agencies willing to assist in the transfer of patients, but the list of agencies in the registry is distressingly small. Patients challenging an institution are unlikely to find another institution willing to accept a patient that is using resources with little or no hope of recovery or benefit. If the law provided resources for the transfer of a patient that would protect institutions accepting such patients from financial loss, more successful transfers might take place.
Hudson’s case is again one of physiological futility as his condition is fatal without exception, and he died within moments of withdrawal of ventilator support as expected, but it is a value judgment as well. His mother may argue that his ventilator support is not a futile treatment as it can keep him alive; it does have a physiological effect. Thus, even in this case, the determination of futility is based on a value judgment. Just as in the case of Baby K, Hudson’s mother valued his life, in whatever state he was in, more than the hospital and his care providers. In response to the death of Sun Hudson, Dr. William Winslade, lawyer and professor at the Institute for Medical Humanities at the University of Texas Medical Branch, said, “This isn’t murder, it’s mercy, and it’s appropriate to be merciful in that way. It’s not killing. It’s stopping pointless treatment.” The treatment was not deemed futile because it could not extend life; it was deemed futile because it could not improve Hudson’s condition nor provide him with a chance for living a meaningful life as defined by his care providers against his mother’s definition of a meaningful life.
In his book, The Healer’s Power, Dr. Howard Brody anticipated that definitions of physiologic futility would not be value free. He says, “That no sense of futility can ever be value-free in the required sense is driven home by the goal-relativity stipulation. One can always ask, ‘Futile relative to what goal?’ and some values will have to be employed in the selection of the relevant goal from among a set of all possible or conceivable goals. Applied to the physiologic definition, it means that virtually no ‘futile’ intervention produces no physiologic change at all; but it does fail to produce the physiologic change that is desired.” The value judgment enters the discussion when the physiologic change desired by the patient or family is different from the physiologic change sought by the care providers.
Cases of health care providers wishing to withdraw or withhold treatment over the objections of patients are relatively rare, but they produce powerful emotions generated by love, religious devotion, and grief. Respect for such powerful emotions is a moral imperative. Respect does not, however, entail that care providers become enslaved to the emotions or values of patients and their families. Care providers should not mask their value judgments by invoking futility to resolve disputes between patients and care providers when patients demand treatment that seems to be of insufficient benefit or causes too much suffering to warrant its cost or effort.
William Harper offers a critique of Lawrence Schneidermans’ and Nancy Jeckers’ arguments in Wrong Medicine that physicians are obligated to withhold treatments that are futile. Harper points out that doctors already recognize a duty to withhold futile treatments in the sense that treatments have no hope of achieving the goals of the patient or physician. As an example, Harper says that no physician should offer copper bracelets to patients to cure arthritis because there is no evidence that copper bracelets have any effect on arthritis. Harper’s claim is that Schneiderman and Jecker are not really arguing for the duty to withhold useless treatments; they are actually trying to expand the number of treatments regarded as futile. He says their “position on withholding treatment is best advanced by arguments that directly support their intuitions that certain treatments (which they label ‘futile’) do not benefit the patient.” In most of the cases Harper cites in his article, conflict arises when doctors feel a patient can receive no benefit from a treatment that family members want to continue. As in the cases I’ve discussed above, family members often place a much greater value on the life of a loved one than do some health care providers. In some cases, the issue appears to result from an unequal distribution of knowledge. In such cases, patient education is sometimes effective. Indeed, thoughtful and compassionate family meetings avoid many conflicts over withdrawal of treatment. In Harper’s conclusion, he says, “Any successful treatment of these issues will have to include a determination of what counts as benefit to the patient. This will require a determination of the kinds of lives worth living, and this, in turn, an identification of the sources of worth for human life.” Except in cases where a treatment simply cannot help either the patient or the physician achieve their medical goals, discussions of futility almost always rest on either a misunderstanding or conflicting values. Harper’s argument is that discussions of conflicting values must take place in open and frank discussions and not behind the veil of futility. To determine whether it is worthwhile to keep an anencephalic baby alive for a week with a ventilator requires a determination of the value of that baby’s life. Determining the value of such life requires discourse that may include representative health care providers, religious and spiritual leaders, secular philosophers, and bioethicists.
In a constructivist analysis of the “utility of futility” language, Franco Carnevale uncovers similar issues. He says, “What emerges is not a debate about the permissibility of futile intervention but, rather, struggles over differing conceptions of a ‘good enough life,’ as well as tensions over trust, respect, and power among the many agents. Framing these issues in terms of futility discourse disregards this inherent strife over trust, respect, and power; indeed, futility talk seems to perpetuate these problems further.” In the cases examined in this paper, the assertion of physician autonomy resulted in power struggles where the patients’ families felt their values had been trivialized or ignored. In these cases, futility was asserted as a fact, concealing the real source of dispute. The use of futility by physicians diverted attention away from the issues of the religious values of patients, the financial costs of treatment, and the value of enabling families to take time to adjust to the passing of a loved one. No source of discourse or communication will eliminate disagreement, but an honest and straightforward statement of what values are in conflict is more likely to preserve trust in professional health care providers than a blanket appeal to futility.
This is more than a mere discussion of semantics. Paul Hofmann and Lawrence J. Schneiderman quote Edmund Pelligrino saying that “some operative way of making a decision when ‘enough is enough’ is necessary. . . . Some determination of futility by any other name will become a reality.” It is misleading to say that a determination of futility will become a reality. Rather, a determination of when life should be prolonged will be made a reality. A discussion of what kind of life is of value to a patient, to a patient’s family, to society, or to God is quite different from a discussion of what treatments are futile. In the cases of Helga Wanglie, Sonya Causey, Baby K, and Sun Hudson, the health care providers had deemed their lives to be worth less than the cost of extending them. In some of the cases, one can imagine that if the families had opposed treatment, they would probably argue that the treatments were burdensome and painful. Providers often attempt to avoid difficult conversations by invoking futility, but their refusal to acknowledge the real motivations for their actions only produces distrust and resentment.
Issues
Several issues seem to be shrouded repeatedly by discussions of futility. I will discuss these below.
Autonomy—Neither patients nor physicians have unlimited autonomy. Patients are sometimes rescued against their will, and their rescuers are not liable for malpractice or even lack of professionalism. Patients also do not have the right to demand any treatment they think might benefit them. Physicians have an obligation to protect patients from inappropriate treatments. Refusing to provide such treatments is a part of professional responsibility, not physician autonomy. Nonetheless, physicians do have a great deal of autonomy. Physicians are not obligated to treat patients under most circumstances. Patients may not be excluded as a result of illegal discrimination, but may be excluded for most other reasons. Physicians also have the power to terminate their relationships with patients under most conditions. All four cases in this paper involve patients who are dependent on life support and have no alternative means of sustaining life. This is a rare restriction on physician autonomy just as there are rare restrictions on patient autonomy. It is misleading to construct debates of futility as debates of physician autonomy.
Rationing—Often, when health care providers claim that a treatment is futile, they mean that it is not worth the cost. Less expensive treatments offering no better outcomes would likely be offered. It appears this was the issue in the case of Sonya Causey, but the issue of cost was not discussed directly. When a physician says outright that a patient’s life is worth less than the money it would take to preserve it, families and others may be offended by the harshness of the language. Such harshness is needed, however, if doctor’s, patients, and society are ever to come to terms with the real issues of rising health care costs and the expense of offering treatments that offer little benefit to patients and may even be a burden to them.
Religion—It is said that we should avoid discussion of religion and politics in polite company, but many cases such as Baby K involve a conflict of religious values. Some physicians are strict vitalists, and some patients are strict vitalists. These lead to physicians sometimes wanting to impose unwanted treatments while in other cases physicians want to withhold wanted treatments. Simply claiming that a treatment is medically futile can obscure the differences among physicians regarding what care is appropriate and what care is not. Neither physicians nor patients should feel the need to obscure their religious feelings when discussing whether treatment is beneficial or burdensome. Of particular concern are issues of the sanctity of life. Even those who hold that human life is sacred and that all human lives are of equal value usually recognize exceptions. Compassion tends to motivate even the most religious to choose to let people die when their continued life causes extreme pain and suffering. Given that almost everyone recognizes exceptions, conversations about the value of a patient’s life may not be in vain. Open discussion is not likely to end all conflicts, but it will expand understanding.
Quality of Life—Saying that a life worth living creates powerful emotions in many, especially as it is reminiscent of the words of Nazi doctors. Nonetheless, many claims of futility are centered around whether the patient’s life is a life that anyone would want to live. In the case of unconscious patients, it is impossible to tell whether they are receiving benefit from their lives. Sometimes, it is their families or loved ones who are receiving benefit from their lives. This does not justify keeping them alive, but it helps to frame questions of quality of life. Someone’s life may be valuable because it is in that person’s interest to stay alive, or it may be valuable because someone else is interested in keeping that person alive. Disputes over quality of life should be stated as such.
Conclusion
The concept of physiological futility is useful when discussing whether a particular treatment will help a patient meet particular health goals. Menikoff’s example of the futility of using antibiotics to treat viral infections is a workable example. It is futile to give antibiotics for viral infections because they will have no effect. This kind of futility is not an issue for the law, however, as doctors are completely free to refuse to prescribe antibiotics for viral infections without any fear of legal challenges from patients, who are free to seek other medical opinions. Instead, legal problems arise when doctors invoke futility to withdraw or withhold treatment that is achieving some result, usually the prolongation of a seriously impaired life. The treatment may be futile in curing the patient’s condition or even improving it, but it is not futile in sustaining life. The real question is not over futility but over whether the life is worth sustaining. When legal problems arise, discussions of “futility” should be avoided, and issues of quality of life, costs, benefits, and religious value should be discussed openly.
