The Caduceus in Court

Autonomy, Futility, and the Limits of Medicine ROBERT L. SCHWARTZ

Surgeon: I don't seem to understand; why, precisely, have you come to see me today? Patient: I am here because I need to have my right arm amputated, and I have been told that you are one of the finest surgeons in town.

Surgeon: I'm sorry; your request is simply unacceptable. My values do not permit me to provide the services you seek. I just don't think it would be right.

Patient: Wait just a minute. I am not hiring you for your ability to make moral judgments. I am hiring you beSurgeon: That is, of course, correct. Tell cause of your technical skill in removme, though —I do not see a referral ing limbs. We are talking about my arm, here — what makes you think that you my life, and my values. I have decided need your arm amputated? I need the surgery and I ask you merely Patient: It is the only way I can expiate to respect my autonomy and to apply my sins. I could describe those sins to your medical skill so that my values can you in detail, and I could tell you why be served. If you want to expiate your this is the only way I can seek expia- sins in some other way, that's just fine tion, but that hardly seems appropriate with me. I don't want your religious or necessary. In any case, I am sure that and ethical peccadillos to interfere with the only way I can expiate them is by a high-quality technical medical service that I am paying you to provide for me. having my right arm amputated. Surgeon: Do I understand this? You came to see me because you want a good surgeon to amputate your right arm so that you can expiate your sins. Patient: Exactly; I knew you would understand. By the way, I am fully insured. Surgeon: Are you crazy? You've come to a surgeon just because you want your arm lopped off? Patient: I would be crazy if I went any place else. I mean, you wouldn't recommend a butcher or a chiropractor, would you?

Most of us find the surgeon's surprise at this patient's request understandable, and it is hard to imagine any surgeon acceding to this patient's demand. On the other hand (the one left), the patient is right —the surgeon is denying his technical skill because his values are different from those of the patient, whose values the surgeon does not respect. l The autonomy of the patient is being limited by the values of the doctor whose own interests, other than his interest in practicing medicine according to his own ethical values, would

Cambridge Quarterly of Healthcare Ethics (1992), 2, 159-164. Printed in the USA.

Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00


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remain unaffected by his decision to provide the service. Autonomy and Patient Control of Medical Decision Making Autonomy is the authority to make decisions in accord with one's own values, unrestrained by the values of others who do not suffer the consequences of the decision. Ordinarily, the principle of autonomy authorizes patients to make healthcare decisions unrestrained by the values of their physicians, others in the healthcare industry, or the rest of society. Despite this, even the strongest supporters of the primacy of the principle of autonomy in healthcare decision making — even those who believe that autonomy virtually always trumps beneficence — would be likely to support (or even require) the surgeon's decision not to offer surgery in this case. But why? The principle of autonomy has never been understood to authorize patients to choose from among an unrestricted range of alternatives. As Fenella Rouse points out in the next note on the Wanglie case, autonomy has often been misconstrued and improperly applied by courts in cases involving medical decision making. In any case, there are at least three kinds of limitations on the exercise of autonomy by those making healthcare choices. First, patients may not require that they be treated by nonmedical means. Second, patients may not require that they be given scientifically futile treatment. Finally, and most significantly, patients may not require that they be treated in ways that are inconsistent with the ends of medicine, that is, in ways that are outside of the scope of medicine. First, for example, a tense and depressed streetcar operator is not denied autonomy by our healthcare system if he is not given the option of choosing 160

3 weeks on the beach in Tahiti as a cure for his condition, even though it may well be effective. Three weeks on the beach in Tahiti is simply not a medical means of treatment—it is not among the medical alternatives for the treatment of that (or any other) condition. Second, where the issue is one of scientific futility, i.e., whether a medical procedure will have the scientific consequences that are expected, the issue is left entirely to the medical profession. Physicians are not required to prescribe pasque flower tea for the treatment of cancer, for example, because, as a scientific matter, there is simply no efficacy in treatment by pasque flower tea. From a purely scientific perspective, the treatment of cancer by pasque flower tea really is futile. Unlike beach rest, amputation is within the therapeutic arsenal of the medical profession; it is a medical procedure. Unlike pasque flower tea as a cure for cancer, surgical amputation is a proven effective way of removing a limb; thus, it is not futile in a scientific sense. Despite this, though, we would not allow the patient in the opening vignette to demand that his arm be amputated because patients are not permitted to demand surgery that is inconsistent with the definition of the scope of medical practice accepted by the surgeon.2 In their exercise of autonomy, patients may choose only from among reasonable medical alternatives. The hard question is how doctors, patients, and others define which medically and scientifically proven procedures are among the reasonable medical alternatives. The Wanglie Case The limitations on a patient's autonomy to choose healthcare has come to the forefront of the bioethics debate over the past year. In December 1989, Helen Wanglie, an 87-year-old retired school

The Limits of Medicine

teacher in Minneapolis, tripped on a rug in her home and fractured her hip.3 One month later, after surgery in one hospital, she was transferred to Hennepin County Medical Center, where her doctors determined she needed assistance in breathing and placed her on a ventilator. Three months later, in May 1990, she was transferred to yet another hospital to see if she could be weaned from her ventilator. While there, she suffered cardiac arrest and was resuscitated, but only after she suffered severe and irreversible brain damage that put her in a persistent vegetative state. She was moved back to Hennepin County Medical Center, where she was maintained on a ventilator and fed through a gastrostomy tube. Mrs. Wanglie remained in a persistent vegetative state for several months before her physicians determined that the continuation of high-tech medical intervention was inappropriate. In essence, the doctors determined that the care Mrs. Wanglie was receiving was no longer among the reasonable medical alternatives for a person in her condition —it was, to her doctors, morally analogous to amputating a limb to expiate sins. Mrs. Wanglie's husband and her two children disagreed. As Mrs. Wanglie's husband pointed out, "Only He who gave life has the right to take life." He also pointed out, "I am a prolifer. I take the position that human life is sacred/' 4 He and the children agreed that Mrs. Wanglie would want treatment continued, even if the doctors believed that there were no chance of recovery. This was, as the family pointed out, a determination based on the patient's values, and there was no reason to defer to the doctors' collective ethical judgment. The physicians and the hospital searched in vain for some healthcare facility in Minnesota that would be willing to take Mrs. Wanglie and continue to provide her care. None came forward. Frustrated by what they consid-

ered the continued inappropriate use of medicine, the hospital sought a court order appointing a conservator to replace Mr. Wanglie to make healthcare decisions for Mrs. Wanglie. On 1 July 1991, the trial court judge refused to issue an order and effectively confirmed Mr. Wanglie's right to continue to make healthcare decisions for his wife of 53 years.5 Three days after the order was issued, Mrs. Wanglie died "of natural causes." Her hospitalization cost nearly 1 million dollars, which was paid by Medicare and her private medigap insurance carrier. Neither objected to the care for financial or cost-benefit reasons, and the cost properly did not enter into the judicial analysis of the case. Asking the Wrong Question: Substitute Decision Makers and the Wanglie Court Unfortunately, the litigation in this case obscured the real issue. The hospital's decision to seek a conservatorship did nothing more than raise the issue of whether Mr. Wanglie was the best decision maker for his wife. The lawsuit asked nothing more than whether Mr. Wanglie was the most able to apply his wife's values to the medical facts in this case.6 Indeed, the hospital supplied no evidence that anyone else would be more likely to be able to determine and apply Mrs. Wanglie's values. To the extent that the litigation focused on how best to carry to fruition Mrs. Wanglie's autonomy, not on the limits of that autonomy, the hospital was left without a prayer of success. The real question, however, should not have been what Mrs. Wanglie would have desired (or what was in her "best personal medical interest") — there was no reason to doubt her family on that point —but whether the continuation of ventilator support and gastrostomy feeding were among the reasonable medical alternatives that should have 161

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been available to Mrs. Wanglie or her surrogate decision maker, whoever that might be. The question, really, was whether the provision of this kind of treatment in this kind of case was outside the limits of medicine and, thus, beyond her power of choice. Mrs. Wanglie's healthcare providers should have argued that medical practice simply did not include providing a ventilator and gastrostomy feeding under circumstances of this case, and that no surrogate decision maker — whether it be Mr. Wanglie or another substituted by the court —should be able to choose this option. If, for example, Mr. Wanglie requested that his wife be frozen and cryopreserved so that she could be brought back to life and "cured" when there were sufficient advances in the science of her underlying ailments, there is no doubt that this request would not have to be honored by Mrs. Wanglie's medical team. A request for cryopreservation, like a request for surgery that a patient believes will expiate his sins, may well reflect the true desires of the patient, but it is a request that asks something that is beyond the limits of medicine.7 Why is the Wanglie family request in this case any different? The real question in the Wanglie case was whether the continuation of life-sustaining treatment for an 87-year-old woman in a persistent vegetative state with no hope of return to sentience constitutes treatment outside of the limits of medicine. Although the question of the propriety of treatment for Mrs. Wanglie has been discussed as if it were a question of "futility," there is no doubt that the treatment was not futile in the purely scientific sense. The treatment was designed to keep Mrs. Wanglie alive, and it served this end effectively. Those who have viewed the Wanglie case as one dealing with futility in a scientific sense have brought the wrong perspective to the case. The question is not whether 162

the treatment offered would successfully do what Mrs. Wanglie's family said she desired —keep her alive—but whether keeping her alive, under the circumstances, was beyond the proper scope of medicine. Like most questions in medicine, this is not purely a question of science or a question of values, but a hybrid question. The Role of the Physician in Healthcare Decision Making Even when the question is not a purely scientific one, even when it involves a determination of whether medical treatment justifies the quality of life that reults, our society has generally left to physicians the determination of whether a particular treatment is among the reasonable medical alternatives. There are, of course, problems with this approach.8 Why should physicians have the exclusive authority to define the extent of their own professional conduct? Does this lead to too much variation from doctor to doctor and from hospital to hospital? Could doctors decide that providing treatment to HIV-positive patients is beyond the limits of medicine? Leaving the question of what constitutes a reasonable medical alternative in the hands of Dr. Kevorkian yields a very different result than leaving that same question in the hands of the doctors who are associated with the right-to-life movement. As the national debate over euthanasia has demonstrated, doctors disagree over the appropriate scope of medicine with as much vigor, and probably with more concern, than the rest of us. In the end, though, that is exactly why these decisions should be left to physicians. If a patient who desires a particular course of treatment can find a healthcare provider—any healthcare provider—who believes that the proposed course of treatment is within the realm of reasonable medical alter-

The Limits of Medicine

natives, that patient will have access to that course of treatment. It is only when a patient desires treatment that not a single healthcare provider believes to be within the limits of medicine that the patient will be denied that course of treatment. If a patient seeks amputation for the expiation of sins, for example, it is unlikely that the patient will find any surgeon willing to perform the task. When there is universal agreement among healthcare providers that the patient's request seeks something beyond the limits of medicine, that should constitute very strong evidence that the request is inappropriate. The Wanglie family could not find any healthcare provider in Minnesota who would offer the medical services the family thought appropriate. Although the technical services that were sought (the ventilator, for example) were clearly within the scope of medical practice, there was no healthcare provider in Minnesota who believed that the provision of those services in Mrs. Wanglie's circumstance was within the range of reasonable medical alternatives — at least, no one who was capable of providing the services was willing to do so. In effect, the court required Hennepin County Medical Center to provide a service that was, in the universal conclusion of Minnesota healthcare providers, inappropriate. Asking the Right Question: The Courts and Ethics Committees

treatment was within the limits of medicine. The court did not decide that continued use of the ventilator and the continued gastrostomy feedings were reasonable medical alternatives for Mrs. WTanglie; it did not address these questions at all. Similarly, in October 1991, an Atlanta judge finessed the same issue in just the same way when she determined in the Jane Doe case that a 13-year-old with a degenerative neurologic condition must be continued on a treatment dictated by her father, who believed in miracles, despite the testimony of her pediatric neurologist that it was "ethically and morally unconscionable" to do so.9 If the courts continue to miss the real issue in these cases, as they will, that issue will have to be addressed in some other forum where there is both the moral and medical sophistication to understand the limits of medicine and the sensitivity to understand (and help define) society's reasonable expectations of medicine. Within their roles as educators, as mediators, and as sources for discussion of exactly these questions, broadly interdisciplinary ethics committees seem particularly well suited to the task. When a court is forced to face a determination by such a committee that a particular treatment, in a particular case, is beyond the limits of medicine — even though this treatment is exactly what the patient desires, even though the treatment employs a clearly medical procedure, and even though the treatment is not scientifically futile —that court may be forced to take the real question seriously.

Courts focus only on the best way to serve the autonomy of patients; after all, the courts are largely responsible for making the principle of autonomy the Notes guiding principle for medical decision making. The Wanglie court was simply 1. One might argue that the surgeon's only real concern is over the competency of the patient, unable to get beyond the question of but there is no reason outside of this medical who could best identify the values and request itself to question that competency. Ininterests of the patient and move on to deed, we accept the fact that competent people can make unusual requests — requests that the question of whether the proposed 163

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4. 5.

the vast majority of us find strange — and still 6. be competent. We are even more likely to find unusual behavior (such as various kinds of abstinence and abnegation) consistent with competence when the behavior is religious, or quasi-religious, as it is here. In any case, there is very little left to any meaningful notion of 7. competence if we determine a patient's competence to choose a particular form of treatment solely by reference to the treatment choice he makes. Analogously, the American Medical Association has found it unacceptable to have physicians administer lethal doses of drugs to execute condemned prisoners, even if the condemned prisoners request the administration of the drugs because the alternative methods of execution are more painful or degrading. 8. Although the administration of the relevant drugs is appropriately limited to physicians, their use for this purpose is simply outside of the scope of medicine, whatever the prisonerpatient may desire. A great deal has been written about the Wanglie case. Several relevant articles are found in the July-August 1991 issue of the Hastings Center Report, which includes a summary of the facts prepared by Ronald Cranford of the Department of Neurology at the hospital in which Mrs. Wanglie remained a patient at her death. The facts are fleshed out in various newspaper articles: Colen. Fight over life. Newsday 1991 Jan. 29: City p. 57; Belkin. As family protests, hospital seeks an end to woman's life support. New York Times 1991 Jan. 10: Sec. A, p. 1; Steinbrook. Hospital or family: who decides right to die? Los Angeles Times 1991 Feb. 17: Part A, p. 1. 9. See note 3. Colen. 1991:57. Conservatorship of Wanglie, N o . PX-91-283 (Minn., Hennepin Co. Dist. Ct., July 1, 1991).


The hospital argued that Mr. Wanglie should be disqualified from making the decision for his wife because his decision was not in the "patient's best personal medical interest." Cranford. Helga Wanglie's ventilator. Hastings Center Report 1991; Jul.-Aug.: 23-4. The courts have been unsympathetic to those who seek cryopreservation, as you might guess. For a description of the case of Thomas Donaldson, who did not convince a court to allow the removal and freezing of his head before his certain death from a brain tumor, see Corwin. Tumor victim loses bid to freeze head before death. Los Angeles Times 1990 Sep. 15: Sec. A, p. 28. As one might expect, the case was subsequently turned into an episode of LA. Law (#7D08, copyright 1990). To the extent these problems flow from the use of a "futility" exception to normal requirements of consent, they are cogently and thoughtfully expressed in Scofield. Is consent useful when resuscitation isn't. Hastings Center Report 1991; Nov.-Dec: 28-6. As Scofield points out (in the context of CPR); In reality the futility exception is a dishonest solution to the tragic choice that decisions to limit treatment represent. It purports to represent, but in fact departs from the fundamental values consent is intended to serve. It will not generate the conversation we need if we are to attain consensus about limiting treatment; nor will it make physicians sensitive in their dealings with patients, especially dying patients. It promotes a model of consent that is antithetical to setting limits in a democratic, caring manner, (p. 30) Colen. Judge bars letting girl in coma die. Newsday 1991 Oct. 18: News p. 4.1.

Autonomy, futility, and the limits of medicine.

The Caduceus in Court Autonomy, Futility, and the Limits of Medicine ROBERT L. SCHWARTZ Surgeon: I don't seem to understand; why, precisely, have yo...
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