Medical Futility
The concept of medical futility continues to provoke bioethical controversy although scholarly debate about it has diminished over the past decade. A requested therapy may be said to be medically futile when there is reasonable evidence to believe that it will not improve a patient’s medical condition.
A determination of medical futility has practical importance in medical decision making because once a possible treatment is determined to be futile, physicians no longer have an ethical duty to provide it to patients, even if patients, family members, or other surrogates ask for it. Determining medical futility has become an important and, at times, a necessary step toward withholding or withdrawing a particular medical treatment that the physician believes cannot help, especially when family members or surrogates plead for it. Some scholars have argued further that physicians have an ethical obligation based on concepts of justice not to prescribe futile therapies.1
Despite its ambiguity and controversy, the term “medical futility” remains widely used in medical-ethical discourse, hospital policies, commission reports, medical society opinions, scholarly writings, statutory law, and judicial rulings. For example, the President’s Commission cited futility as one condition for withholding and withdrawing medical treatment.2 The United States Department of Health and Human Services “Baby Doe” regulations used futility as a condition for terminating medical treatment on hopelessly ill newborns.3 The American Medical Association and the American Heart Association mentioned futility as one condition for eliminating the requirement to obtain consent from a patient or surrogate for a Do-Not-Resuscitate order.4 Moreover, countless hospitals have cited medical futility in their policies as one condition for justifying a physician’s order to withhold or withdraw medical treatment. The scholarly output in the medical futility debate is declining. Paul Helft and colleagues described the “rise and fall of the futility movement” pointing out that the concept of futility was nearly unrecognized prior to 1987, published articles about it in scholarly journals peaked in 1995, and interest in it had waned by the turn of the 21st century. The reason for the reduction in scholarly output remains unclear but Helft and colleagues wondered if it was because, in a series of legal rulings, courts failed to uphold its validity.5 Interest in it did not decline because the controversies surrounding futility had been resolved. I suspect that fewer articles now are being written about medical futility because the salient arguments on all sides of the controversy have been made and guidelines to prevent and resolve futility disputes have been drafted and generally accepted.
In this chapter, I critically analyze the concept of futility to define it and identify its criterion. I give examples how physicians have used the definition and criterion in practice by discussing paradigmatic clinical scenarios in neurology: discontinuing ventilator treatment in brain death; writing Do-Not-Resuscitate orders for seriously-ill patients; and withdrawing
life-sustaining treatment from patients with persistent vegetative state, anencephaly, or severe dementia with multi-organ failure. I explain the causes of futility disputes and stress the importance of communicating effectively with patients and families as the best way to prevent and resolve them. I discuss the design of proposed hospital and regional policies and state laws to resolve futility disputes. I end by discussing the ethical duties of physicians to provide demanded but futile treatment in the context of society’s finite health-care resources.6
life-sustaining treatment from patients with persistent vegetative state, anencephaly, or severe dementia with multi-organ failure. I explain the causes of futility disputes and stress the importance of communicating effectively with patients and families as the best way to prevent and resolve them. I discuss the design of proposed hospital and regional policies and state laws to resolve futility disputes. I end by discussing the ethical duties of physicians to provide demanded but futile treatment in the context of society’s finite health-care resources.6
THE DEFINITION AND CRITERION OF MEDICAL FUTILITY
Despite the categorical ring of the word “futility” and its ostensible explicitness, its underlying concept is subtle and complex.7 Like the concept of death discussed in chapter 11, the concept of futility, rigorously explicated, requires the difficult tasks of seeking a definition and a criterion. Yet, when we attempt to define medical futility precisely, we discover that the concept has been applied to at least two distinct phenomena: physiologic effect and therapeutic benefit. Further, when we try to determine the criterion by which a particular therapy or clinical situation is considered medically futile, we discover that futility must be determined along a continuum of outcome probabilities in which it seems arbitrary to stipulate a single point of uselessness.
Robert Truog and colleagues observed that the difficulty in precisely defining medical futility is analogous to the difficulty in defining pornography, as famously stated by U.S. Supreme Court Justice Potter Stewart “But I know it when I see it.”8 Indeed, the term “medical futility” conveys different meanings to different physicians.9 An adequate definition of futility should attempt to capture the meaning implicit in our ordinary and consensual usage of the word. Then we can seek a criterion for futility that shows the definition has been fulfilled and stipulates how futility can be determined in practice.10
The Definition of Futility
Although explicating the definition of medical futility is a contemporary problem, the concept of futility has an ancient heritage. Classical Greek physicians recognized diseases whose outcomes they were powerless to change. Greek physicians believed not only that they had no ethical obligation to attempt to cure an incurable disease, but that they had the obligation not even to attempt to treat it.11 Hippocrates, for example, admonished physicians to “refuse to treat those who are overmastered by their diseases, realizing that in such cases medicine is powerless.”12
Similarly, ancient Jewish law required physicians to try to save life in all circumstances except in the state of gesisah. A patient is in a state of gesisah if the patient is incipiently dying and death seems inevitable within 72 hours, irrespective of treatment. As was true for the Greeks, medical treatment for gesisah not only is not required, it is not permitted, because treatment is viewed as interfering with the peaceful departure of the soul from the imminently dying person.13
Christian ethics contains a similar recognition that ordinary ethical obligations to treat are suspended in states of medical futility. In Roman Catholic doctrine, patients may refuse treatments that “would not offer a reasonable hope of benefit to the patient” and physicians are not required to provide “extraordinary treatment.” Similarly, Protestant writings indicate that patients may refuse life-sustaining treatment when that treatment only “prolongs the dying process.”14
Futility is defined in the Oxford English Dictionary (OED) as “inadequacy to produce a result or bring about a required end; ineffectiveness; uselessness.” The word “futile” is derived from the Latin word futilis meaning leaky. The OED defines a futile action as “leaky, hence untrustworthy, vain; failing utterly of the desired end through intrinsic defect; useless.”15 The relationship of the words “leaky” and “futile” is based on the Greek myth of the 50 daughters of Danaus. As punishment for murdering their husbands, 49 of the 50 Danaïdes were condemned in Hades to carry water to fill a leaky jar. No matter how hard
they tried, their attempt was futile because the water leaked out. Thus, from its original use, “futility” implies that the desired ends cannot be accomplished no matter how hard one tries or how often one’s act is repeated.16
they tried, their attempt was futile because the water leaked out. Thus, from its original use, “futility” implies that the desired ends cannot be accomplished no matter how hard one tries or how often one’s act is repeated.16
The term “futility” is used in contemporary medical literature to refer generally to the uselessness and unsuccessfulness of certain treatments to provide desired benefits. However, the term “futile,” like many quantitative verbal expressions in medicine, including “rare,” “unusual,” “common,” and “infrequent,” has varying quantitative connotations to different physicians. For example, some physicians regard a treatment as futile only if its success rate is 0% whereas other physicians consider treatments futile despite success rates as high as 13%.17 A study of the concordance of ICU futility determinations by critical care physicians and nurses disclosed disagreements about at least one of the daily futility judgments concerning 63% of dying patients.18 A qualitative study of outpatients’ concerns about the utility or futility of end-of-life intensive treatment showed that, although patients did not use those precise words, they exhibited a perception of the concepts of utility and futility of treatment by expressing concern with quality of life, emotional and financial costs of treatment, likelihood of treatment success, and effect of treatment on their longevity.19
It is useful to distinguish futility from related concepts to delineate its boundaries more precisely. Futility should not be used to describe biological acts that are physically or logically impossible, such as a man running a mile in 30 seconds. Neither should futility be used to describe biological acts that are possible but implausible because of current technological limitations, such as trying to revive a decapitated head. Futility should be distinguished from hopelessness. Hopelessness describes a subjective attitude whereas futility refers to an objective quality of an action. Thus, it is possible to say that I realize that an action I am proposing is futile, yet I have hope it will succeed.20
Some physicians have abused the concept of futility by invoking it in an incorrect, inappropriate, and self-serving manner. They glibly justify their decisions to withdraw or withhold treatment misleadingly under the guise of futility when, for a variety of other reasons, they do not wish to provide further aggressive care for a patient. Or, without studying outcome data for the treatment of a particular condition, they summarily but ignorantly declare it to be futile. That some physicians have carelessly and erroneously cited futility as a rationalization for discontinuing treatment they do not wish to provide has led others to recommend a complete moratorium on using futility as the basis for any decision to withdraw or withhold treatment.21
I believe that the concept of medical futility, although difficult, remains useful when it is employed in a precise and consistent manner. I follow the erudite analysis of this topic provided by Lawrence Schneiderman and colleagues.22 The essence of futility is overwhelming improbability in the face of possibility. An act is futile if the desired outcome, while empirically possible, is so unlikely that its exact probability may be incalculable. The fact that a few isolated successes have occurred against a background of thousands of past failures does not disprove futility. Indeed, the rare successes prove that the desired outcome is possible, a prerequisite for a concept of futility.23
Medical futility exists when a treatment of hoped-for benefit may, on the best evidence available, be predicted not to help a patient’s medical condition. The therapy may not be able to provide benefit to the patient either because it is highly unlikely to produce the desired physiologic effect or because it produces a physiologic effect that does not confer benefit to the patient.
The Criterion of Futility
Futility has quantitative and qualitative dimensions both of which are necessary and sufficient to satisfy the definition. The quantitative dimension is the absolute numerical probability of the occurrence of an event, expressed as a fraction or decimal. The qualitative component is the extent to which the outcome event produces benefit to the patient.24
Determining futility is analogous to analyzing a clinical decision. In decision analysis, the force of a medical decision to proceed with a
treatment is directly proportional to the product of two independent variables: the numerical probability of its success and its utility. In this context, utility refers to the quality of the outcome produced by the treatment. A determination of futility, therefore, can result either from an exceedingly small probability of success or from a very poor quality of the outcome. As either the quantity or the quality of the outcome approaches zero, their product approaches zero, hence the act becomes futile. Both the quantitative and qualitative components must be calculated in a determination of futility.25
treatment is directly proportional to the product of two independent variables: the numerical probability of its success and its utility. In this context, utility refers to the quality of the outcome produced by the treatment. A determination of futility, therefore, can result either from an exceedingly small probability of success or from a very poor quality of the outcome. As either the quantity or the quality of the outcome approaches zero, their product approaches zero, hence the act becomes futile. Both the quantitative and qualitative components must be calculated in a determination of futility.25
The best criterion of a medically futile action is one in which either of the following conditions is present: (a) the ability to achieve the desired result is possible, but is one which reasoning or experience suggests is highly improbable and cannot be produced systematically; or (b) a physiological effect may occur, but the physiologic effect does not benefit the patient.26 The former quantitative component also is known as “objective” or “strong” futility because of its exactitude. The latter qualitative component also is known as “subjective” or “weak” futility because it involves a value judgment and therefore may be viewed differently by different persons. Both of these components need to be explored further.
The quantitative aspect of futility is based upon the statistically determined confidence interval (CI) for observing success of treatment. As Schneiderman and colleagues have illustrated the concept, assuming that a therapy is at least plausible for a given condition, if there have been no successes in 100 cases of attempted treatment of the condition with the therapy, it can be said with 95% certainty that there will be no more than three successes in applying the same therapy to the same condition in the next 100 cases. In this example, three successes per 100 trials (0.03) is the upper limit of the 95% CI. If there were no successes in 200 trials, the upper limit of the 95% CI would be 0.015. In 1,000 unsuccessful trials, the upper limit of the 95% CI would be 0.003.27
However, there are three important limitations when using CI statistical data for determinations of futility. First, many clinical decisions simply lack sufficient data from which to make such precise statistical calculations. Although the emerging field of clinical outcome studies is supplying much needed data for clinical decisions, there remain many areas in which data are inadequate for prognostic purposes.28 Many outcome studies in neurology contain Class III or IV evidence, such as that from natural history studies, uncontrolled case series, or expert opinion.29 In the absence of valid outcome studies, clinicians must rely solely on their accumulated experience and that of colleagues. However, recall of accumulated experience is a notoriously inaccurate method of determining therapeutic effect and prognosis because it is susceptible to psychological distortions such as last-case bias.30 Relying solely on experience also can perpetuate systematic errors that cannot be corrected until a more reliable evidence base is available.
Second, the outcome data must be valid, interpreted correctly, and applied appropriately. Some outcome data are invalid because they have been obtained from faulty studies. Some poorly designed studies create the fallacy of the self-fulfilling prophesy by deriving outcome conclusions without adequately controlling the variable in question (see chapter 8).31 In other, better designed studies, erroneous conclusions have been drawn from valid data. Basing bedside clinical decisions on outcome data requires rigorous scrutiny of both the validity and interpretation of the data. Even with flawlessly performed and applied studies, prognostic data remain inherently probabilistic and therefore more accurately predict outcomes for groups than for individuals.32 A recent study of the accuracy of the most commonly accepted prognostic scale for gravely ill ICU patients, the APACHE III, showed a striking error in that it significantly overestimated a hopeless prognosis.33
Third, there is no precise and universally agreed upon numerical threshold for the quantitative component of futility. Is a therapy futile if its chances for producing improvement are 0.001, 0.01, or 0.1? There is a continuum of outcome probabilities in clinical medicine. The point on this continuum at which futility occurs is inherently arbitrary and will be delineated differently by different
physicians and patients and in various clinical settings.34
physicians and patients and in various clinical settings.34
The qualitative aspects of futility are even more controversial. Who is to determine and by what standards, what should be considered the minimum quality of a patient’s life or minimum improvement in a patient’s condition to exceed the threshold for futility? Most people agree that a treatment that succeeds only in prolonging the life of a patient in an irreversible vegetative state does not benefit the patient and hence is futile on a qualitative basis. But how should we apply this concept of futility to the religious patient who believes that human life of any quality should be sustained and therefore wishes to continue such treatment? In this instance, a treatment that would be regarded as futile by the large majority of physicians and patients would not be regarded as futile by this patient. (See the case of Helga Wanglie discussed below.)
This conflict highlights the nagging question of who should be authorized to determine, on a qualitative basis, that a particular therapy is futile: the physician, the patient and family, or society? Ordinarily, physicians believe they alone possess the authority to determine the medical benefits of treatments they prescribe. There is consensus that if, in a physician’s opinion, a therapy is not beneficial, the physician has no obligation to offer the therapy.35 For example, neurologists and neurosurgeons—not patients or families—have the knowledge and experience to determine if surgical removal of a large intracerebral hemorrhage is likely to improve a patient’s neurological outcome.
While granting physicians the exclusive authority to determine therapeutic benefit usually is justified, does this authority extend to telling the family of a patient in a vegetative state that the treatment maintaining the patient’s life is producing no benefit when the family believes it is? In this instance, is futility a medical determination and therefore the appropriate professional domain of the physician, or is it simply a value judgment based upon the physician’s perception about the patient’s quality of life? If a futility determination in this context is merely a value judgment based upon moral, political, or economic considerations, it is not at all clear that physicians have any greater professional prerogative or authority to determine it than laymen.36
Rationing of health care is another factor in the futility discussion. It is axiomatic that health-care resources are finite and that implicit or explicit allocation and rationing decisions are a necessity. If the costs and finitude of health-care resources were not a factor, it would be more easily defensible to provide care that is futile or, at least, of the most marginal utility. However, the reality is inescapable that health care currently is rationed, especially high-technology care in intensive care units, the most common site of futility debates.37 Therefore, taking a hard look at the utility of treatment becomes relevant in the discussion of what counts as futile care. Under these circumstances, according to concepts of justice, expensive medical care of zero or the most marginal utility that utilizes scarce resources cannot be justified because doing so also requires withholding care from arguably more meritorious cases.38
A coherent concept of futility, however, is not dependent on rationing considerations. Irrespective of financial conditions or resource scarcity, the professional integrity of physicians and nurses is relevant to futility decisions. Professional integrity comes under attack if physicians and nurses are forced to provide inappropriate treatments against their better judgment. Physicians and nurses have argued that they should not be required to compromise their professional integrity and dignity by being forced into purely technical roles that violate their professional prerogatives as a result of unreasonable demands for inappropriate, futile treatment by patients or families.39
The incidence of truly futile interventions is lower than many clinicians have assumed. Amir Halevy and colleagues found that only 0.9% of patients treated in ICUs have a predicted mortality greater than 90%.40 Using a broader definition of “potentially ineffective care,” Daniel Cher and Leslie Lenert found that 4.8% of Medicare patients hospitalized in California in 1994 qualified for this designation because they died within 100 days of admission and expended total hospital costs
above the 90th percentile.41 Ramesh Sachdeva and colleagues found that only 2.7% of patient-days in a pediatric ICU met at least one of the definitions of medical futility for some of the days.42 As noted in the discussion of the SUPPORT study in chapter 8, these types of data on outcomes of critically ill patients must be interpreted in light of clinical reality. The determination that a critically ill patient also is terminally ill often can be made more accurately in retrospect.43 Keith Berge and colleagues showed that unrealistic family expectations of outcomes of critically ill ICU patients led to increased resource utilization without survival benefits.44
above the 90th percentile.41 Ramesh Sachdeva and colleagues found that only 2.7% of patient-days in a pediatric ICU met at least one of the definitions of medical futility for some of the days.42 As noted in the discussion of the SUPPORT study in chapter 8, these types of data on outcomes of critically ill patients must be interpreted in light of clinical reality. The determination that a critically ill patient also is terminally ill often can be made more accurately in retrospect.43 Keith Berge and colleagues showed that unrealistic family expectations of outcomes of critically ill ICU patients led to increased resource utilization without survival benefits.44
ILLUSTRATIVE CASES
To understand the concept of medical futility better it is useful to study examples of how the concept has been employed in neurological practice. I discuss five clinical examples commonly regarded as futile: cardiopulmonary resuscitation (CPR) on patients with terminal illnesses, treating the brain-dead patient, treating the patient with an irreversible vegetative state, providing life-sustaining therapy (LST) for the anencephalic infant, and providing LST for the patient with advanced dementia and multi-organ failure. I illustrate each example with a highly publicized medicolegal case report or a case from my experience.
Futility in Do-Not-Resuscitate Orders: The Case of Catherine Gilgunn
The concept of CPR futility is based upon outcome studies of the success of CPR in hospitalized patients with different diagnoses. As discussed in chapter 8, these studies show that not a single inpatient with metastatic cancer, acute stroke, sepsis, or pneumonia on whom CPR was attempted survived to hospital discharge.45 Some physicians thereafter advocated the routine use of Do-Not-Resuscitate (DNR) orders based on quantitative futility for such patients. In a decision analysis model, Donald Murphy and David Matchar proposed establishing thresholds for appropriate use of CPR and other life sustaining therapies, embodying probability of benefit, collective preferences of patients, and the cost of marginal benefits. They argued that life-sustaining therapies such as CPR should not be routinely offered or provided to groups of patients for whom marginal cost-effectiveness is inordinately high because that makes CPR medically or economically inappropriate.46
Murphy and Thomas Finucane extended this argument to suggest that hospitals adopt policies permitting physicians not even to offer the option of CPR to patients or their lawful surrogates when the chances of CPR success were very low. In their review of CPR outcome data, they concluded that the following clinical conditions were sufficiently futile to qualify under this policy: metastatic cancer, Child’s class C cirrhosis, AIDS with at least two episodes of Pneumocystis carinii pneumonia, dementia requiring long-term care, coma lasting longer than 48 hours, multiple organ system failure without improvement after at least three days in the intensive care unit, and unsuccessful out-of-hospital cardiac arrest.47
There is a consensus among physicians and the public that physicians are required neither to offer nor to discuss futile therapies with patients. Thus, for example, because outcome data are conclusive that hyperbaric oxygen treatment does not improve multiple sclerosis, a neurologist is not required even to mention the existence of this therapy when discussing therapeutic options with a multiple sclerosis patient. Adopting this doctrine, Murphy and others have argued that when physicians determine that CPR is a futile form of therapy, they are not obligated even to offer it to patients as an option. Physicians therefore should be authorized to write a DNR order without a patient or surrogate’s consent and hospital policies should be amended to accommodate this change.48
While this is a coherent argument, the problem with adopting such a policy is that, unlike the case of hyperbaric oxygen therapy in MS, the existence of CPR is widely known and assumed by most patients to be provided. I believe that a more reasonable position is for the physician, when possible, to explain to a patient whose underlying disorder is one in which CPR would be futile, that the physician
has written a DNR order and why. This dialogue with the patient or surrogate at once acknowledges that the physician has given thoughtful consideration to the use of CPR and has rejected it as a harmful and ineffective therapy in this instance. This dialogue requires tact and compassion, and is most easily conducted when there is an established patient-physician relationship. The overwhelming majority of patients and surrogates will understand the medical-evidence basis for concluding that CPR is futile, agree with the decision for a DNR order, and be grateful for the physician’s communication and care.49
has written a DNR order and why. This dialogue with the patient or surrogate at once acknowledges that the physician has given thoughtful consideration to the use of CPR and has rejected it as a harmful and ineffective therapy in this instance. This dialogue requires tact and compassion, and is most easily conducted when there is an established patient-physician relationship. The overwhelming majority of patients and surrogates will understand the medical-evidence basis for concluding that CPR is futile, agree with the decision for a DNR order, and be grateful for the physician’s communication and care.49
The practice of patient notification of a DNR order is consistent with the desire which patients, families, and surrogates have expressed in surveys, to participate in decisions involving resuscitation and receiving life-sustaining treatment.50 If dying patients or their surrogates demand CPR despite the best attempts of the physician to reason with them, there is no moral duty of the physician to order it because it is ineffective therapy. However, the prudent physician should consider the implications of this decision and act accordingly. The public should be educated that CPR is ineffective and inappropriate therapy for most dying patients. To counteract the grossly misleading images commonly conveyed by the media,51 this education should help to diminish unreasonable demand for CPR and increase understanding and acceptance of the reality of dying from a terminal illness.52 One study found that few internal medicine residents were using the futility rationale to avoid discussing DNR orders with patients.53 The United States Department of Veterans Affairs policy mandates discussing DNR orders with patients or surrogates in the setting of futility and provides a procedure to mediate resulting disputes similar to that outlined later in the chapter.54
The highly publicized case of Catherine Gilgunn addressed the question whether a determination of medical futility was sufficient grounds for a physician to write a DNR order and remove LST against the wishes of a surrogate. Mrs. Gilgunn was 71 years old when she was admitted to Massachusetts General Hospital for a series of complicated medical problems including hip fractures, diabetes, Parkinson’s disease, breast cancer, heart disease, and chronic urinary tract infections. While hospitalized she developed status epilepticus leading to brain damage, coma, and ventilator dependency. Her daughter Joan assumed the role of surrogate by agreement of the family. Mrs. Gilgunn was treated for several weeks without recovery after which her physicians determined that further treatment was futile. Although Joan expressed the continued wish that “everything be done,” Mrs. Gilgunn’s attending physician wrote a DNR order following a consultation with the Optimum Care Committee chairman Dr. Edwin Cassem.55 After a protest from Joan, the DNR order was reversed.
At this point, a new attending physician, Dr. William Dec, met with Mrs. Gilgunn to notify her that in his opinion her mother’s case was hopeless. Another approval by Dr. Cassem and hospital legal counsel led Dr. Dec to rewrite the DNR order over the persistent protest of Joan. Dr. Dec then ordered the ventilator to be weaned and Mrs. Gilgunn died five days later. Joan met with Dr. Dec only once and did not meet with Dr. Cassem, or any member of the Optimum Care Committee. After Mrs. Gilgunn’s death, Joan sued Dr. Dec, Dr. Cassem, and the hospital for withdrawing the ventilator over her objection, claiming that this act caused her mother to die.
After a widely publicized trial, a jury concluded that ventilator therapy and CPR for Mrs. Gilgunn was indeed futile and found in favor of the defendant physicians and hospital. However, the legal precedential value of this case is categorically limited because it was a jury verdict without an appellate court ruling on potentially contestable issues such as jury instructions and objections to the evidence. Therefore, although the jury accepted the theory of futility advanced by the defendants, in the absence of appellate review, Gilgunn offers physicians no legal support to invoke futility and probably will have little influence on future cases.56 However, it was the first case in which laymen accepted a medical futility rationale. Gilgunn demonstrated the importance of ongoing communication between physicians and surrogates and also showed the limits of mediation by ethics
committees and the necessity to define medical goals collaboratively.
committees and the necessity to define medical goals collaboratively.
Futility in the Persistent Vegetative State: The Case of Helga Wanglie
The application of the concept of futility to the persistent vegetative state (PVS) was highlighted by the case of Helga Wanglie in Minneapolis in 1991.57 Mrs. Wanglie was 85 years old when she developed a PVS from hypoxic-ischemic brain damage suffered during a cardiopulmonary arrest. Unlike most PVS patients, she was ventilator-dependent and had failed trials of weaning. After she remained in this state for several months, her examining neurologists stated with a high degree of certainty that she would never regain awareness. Her physicians therefore told her family that they planned to withdraw the ventilator because it was providing her no medical benefit.58
However, her husband, daughter, and son disagreed with any suggestion to withdraw treatment and insisted that the ventilator treatment be continued. Although initially they denied that Mrs. Wanglie had previously made known her treatment preferences, later they reported that “she did not want anything done to shorten or prematurely take her life.” When asked the reasons for this decision, in light of the dismal prognosis, Mr. Wanglie responded, “That may be true but we hope for the best.” Mr. Wanglie indicated that only God can take a life and that the doctors should not play God.59 The family did, however, consent to a DNR order.
Mrs. Wanglie’s husband, an attorney, refused the physician’s suggestions that Mrs. Wanglie be transferred to another facility or that the family obtain a court order mandating her continued treatment with the ventilator. Of note, financial incentives or disincentives for either the family or hospital were minimized because her medical bills were being paid fully by insurance. Because of the attending physician’s judgment that the medical staff was providing inappropriate care, the hospital decided to go to court to resolve the dispute. They asked the court to appoint an independent conservator to judge whether Mrs. Wanglie should remain on the ventilator. The husband filed a petition to be named her conservator and the court subsequently agreed in a finding that he could best represent her interests. As expected, he continued to refuse to allow her ventilator to be withdrawn. The hospital continued her ventilator therapy until she died after having lived a year in PVS.60
One of Mrs. Wanglie’s hospital staff physicians, Steven Miles, later argued that his decision to terminate her ventilator treatment was ethically justified on the grounds that it was providing her no medical benefit because she was in a PVS from which she never could recover awareness.61 Miles categorized ventilator therapy for Mrs. Wanglie as “inappropriate” because it provided her “no medical benefit.” Although Miles later denied that his decision to stop the ventilator was based on a concept of “futility,”62 his usage of “no medical benefit” is equivalent to the qualitative or subjective concept of futility outlined above and accepted by many scholars using the term.63
Recent attention has been directed to the distinction between a patient’s request for a therapy and a patient’s refusal of a therapy. Physicians are morally and legally obligated to respect the valid, rational treatment refusal of a competent patient or a lawful surrogate but have no correlative duty to honor a patient’s request for a therapy that the physician believes to be inappropriate, ineffective or dangerous.64
In the Wanglie case, Miles and the other treating physicians believed strongly that continued ventilator treatment was providing her no medical benefit. Accordingly, they wished to discontinue the treatment even though doing so likely would lead directly to her death. Her family offered reasons why they believed that continued treatment was both justified and in accordance with her previously stated wishes. The disagreement centered on differing interpretations of the value to Mrs. Wanglie and others of her continued life in a PVS, and of the authority of physicians alone to make such determinations. It also relied on her physicians’ following accepted medical practice standards.
I believe that Mr. Wanglie’s decision was rational, although I disagree with it substantively and would not have made that decision
for myself or for a member of my family. Indeed, surveys have shown that a large majority of people have indicated that if they were in a PVS without hope for recovery, they would prefer to be allowed to die from nontreatment.65 However, when a loving family member has made a rational decision to continue ventilator treatment and thereby prolong life, I believe that physicians are ethically obligated to respect it, so long as doing so does not directly harm another patient and it does not violate accepted medical practice standards. If there were a shortage of ventilators and a more viable patient were competing for Mrs. Wanglie’s ventilator, I would agree with the position taken by the Society of Critical Care Medicine that a PVS patient should be removed from the ventilator to permit it to be used by another patient who could benefit more from its use.66
for myself or for a member of my family. Indeed, surveys have shown that a large majority of people have indicated that if they were in a PVS without hope for recovery, they would prefer to be allowed to die from nontreatment.65 However, when a loving family member has made a rational decision to continue ventilator treatment and thereby prolong life, I believe that physicians are ethically obligated to respect it, so long as doing so does not directly harm another patient and it does not violate accepted medical practice standards. If there were a shortage of ventilators and a more viable patient were competing for Mrs. Wanglie’s ventilator, I would agree with the position taken by the Society of Critical Care Medicine that a PVS patient should be removed from the ventilator to permit it to be used by another patient who could benefit more from its use.66
Using the term “medical benefit” to describe a treatment that sustains a person’s life is potentially misleading. True medical benefit, such as, for example, the benefit gained from choosing carbamazepine in a case of complex partial seizures, may be a judgment that is the exclusive domain of physicians, but the decision whether a patient should live or die usually does not occupy that realm. Purely and simply it is a value judgment over which physicians can exert no specialized professional claim. Physicians can counsel families but should not overrule their decisions unless they are irrational or directly harm other patients. I believe that if, after adequate counseling, the family wished to keep her alive on the ventilator, the physicians should have complied.67
Only our society can resolve the futility debate. If, through democratic process, we were to enact a national policy saying that we no longer can afford to treat patients in longstanding PVS who have no hope for recovery of awareness because we desperately need that money for more meritorious health-care expenditures, then physicians could unilaterally declare such cases futile (or not medically indicated) and discontinue further life-sustaining treatment. Our society has not yet achieved that level of consensus on this policy. Therefore, I believe that physicians alone cannot make that decision. Developing such a consensus is an important objective of a national health-care policy.68 Although courts of law may not be the ideal venue to resolve these conflicts, until a national policy exists, intractable conflicts like these that cannot be settled at the hospital level probably should be referred for judicial review to fairly balance the rights of patients, families, and others.69
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