A Dispute Over Death: Mr. N, a 44-year-old man with a large extended family, is admitted to an ICU ?with ?raised ?intra

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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: That is, of course, correct. Tell me, though-I do not see a referral here -what makes you think that you need your arm amputated?

Patient: It is the only way I can expiate my sins. I could describe those sins to you in detail, and I could tell you why this is the only way I can seek expia- tion, but that hardly seems appropriate or necessary. In any case, I am sure that the only way I can expiate them is by 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 un- derstand. By the way, I am fully in- sured.

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 rec- ommend a butcher or a chiropractor, would you?

Surgeon: I'm sorry; your request is sim- ply 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 be- cause of your technical skill in remov- ing limbs. We are talking about my arm, my life, and my values. I have decided I need the surgery and I ask you merely to respect my autonomy and to apply your medical skill so that my values can be served. If you want to expiate your sins in some other way, that's just fine with me. I don't want your religious and ethical peccadillos to interfere with a high-quality technical medical service that I am paying you to provide for me.

Most of us find the surgeon's surprise at this patient's request understand- able, and it is hard to imagine any sur- geon acceding to this patient's demand. On the other hand (the one left), the patient is right-the surgeon is deny- ing his technical skill because his values are different from those of the patient, whose values the surgeon does not re- spect. 1 The autonomy of the patient is being limited by the values of the doc- tor whose own interests, other than his interest in practicing medicine accord- ing to his own ethical values, would

Cambridge Quarterly of Healthcare Ethics (1992), 2, 159-164. Printed in the USA. Copyright 0 1992 Cambridge University Press 0963-1801/92 $5.00 + .00

Robert L. Schwartz

remain unaffected by his decision to provide the service.

Autonomy and Patient Control of Medical Decision Making

Autonomy is the authority to make de- cisions in accord with one's own val- ues, unrestrained by the values of others who do not suffer the conse- quences of the decision. Ordinarily, the principle of autonomy authorizes pa- tients to make healthcare decisions un- restrained by the values of their physicians, others in the healthcare in- dustry, or the rest of society. Despite this, even the strongest supporters of the primacy of the principle of auton- omy in healthcare decision making- even those who believe that autonomy virtually always trumps beneficence- would be likely to support (or even re- quire) 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 Wan- glie case, autonomy has often been mis- construed and improperly applied by courts in cases involving medical deci- sion 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 non- medical means. Second, patients may not require that they be given scientifi- cally futile treatment. Finally, and most significantly, patients may not require that they be treated in ways that are in- consistent with the ends of medicine, that is, in ways that are outside of the scope of medicine.

First, for example, a tense and de- pressed streetcar operator is not denied autonomy by our healthcare system if he is not given the option of choosing

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 treat- ment of that (or any other) condition.

Second, where the issue is one of sci- entific futility, i.e., whether a medical procedure will have the scientific conse- quences 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 sci- entific matter, there is simply no effi- cacy 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 pro- cedure. 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 in- consistent with the definition of the scope of medical practice accepted by the surgeon.2 In their exercise of au- tonomy, patients may choose only from among reasonable medical alternatives. The hard question is how doctors, pa- tients, and others define which medi- cally and scientifically proven proce- dures 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 Hen- nepin County Medical Center, where her doctors determined she needed as- sistance 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 resusci- tated, 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 main- tained on a ventilator and fed through a gastrostomy tube. Mrs. Wanglie re- mained in a persistent vegetative state for several months before her physi- cians 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 amputat- ing 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 contin- ued, even if the doctors believed that there were no chance of recovery. This was, as the family pointed out, a deter- mination 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 will- ing to take Mrs. Wanglie and continue to provide her care. None came for- ward. Frustrated by what they consid-

ered the continued inappropriate use of medicine, the hospital sought a court order appointing a conservator to re- place Mr. Wanglie to make healthcare decisions for Mrs. Wanglie. On 1 July 1991, the trial court judge refused to is- sue an order and effectively confirmed Mr. Wanglie's right to continue to make healthcare decisions for his wife of 53 years.' 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 in- surance carrier. Neither objected to the care for financial or cost-benefit rea- sons, and the cost properly did not en- ter 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 de- cision 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 ex- tent that the litigation focused on how best to carry to fruition Mrs. Wanglie's autonomy, not on the limits of that au- tonomy, 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

Robert L. Schwartz

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 out- side the limits of medicine and, thus, beyond her power of choice.

Mrs. Wanglie's healthcare providers should have argued that medical prac- tice simply did not include providing a ventilator and gastrostomy feeding un- der 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. Wan- glie 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 sci- ence 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 cryopreser- vation, 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-sus- taining treatment for an 87-year-old woman in a persistent vegetative state with no hope of return to sentience con- stitutes treatment outside of the limits of medicine.

Although the question of the propri- ety 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 de- signed 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

the treatment offered would success- fully 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 ques- tion 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 treat- ment justifies the quality of life that re- ults, our society has generally left to physicians the determination of whether a particular treatment is among the rea- sonable medical alternatives. There are, of course, problems with this approach.

8

Why should physicians have the exclu- sive 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 pa- tients is beyond the limits of medicine? Leaving the question of what consti- tutes 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 pro- posed 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 be- lieves to be within the limits of medi- cine 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 pa- tient will find any surgeon willing to perform the task. When there is univer- sal agreement among healthcare pro- viders that the patient's request seeks something beyond the limits of medi- cine, that should constitute very strong evidence that the request is inappro- priate.

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 pro- vision of those services in Mrs. Wang- lie's circumstance was within the range of reasonable medical alternatives -at least, no one who was capable of pro- viding 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 con- clusion of Minnesota healthcare provid- ers, inappropriate.

Asking the Right Question: The Courts and Ethics Committees

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 guiding principle for medical decision making. The Wanglie court was simply unable to get beyond the question of who could best identify the values and interests of the patient and move on to the question of whether the proposed

treatment was within the limits of med- icine. The court did not decide that continued use of the ventilator and the continued gastrostomy feedings were reasonable medical alternatives for Mrs. Wanglie; it did not address these ques- tions at all. Similarly, in October 1991, an Atlanta judge finessed the same is- sue in just the same way when she determined in the Jane Doe case that a 13-year-old with a degenerative neu- rologic 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 un- conscionable" to do so.

9

If the courts continue to miss the real issue in these cases, as they will, that is- sue will have to be addressed in some other forum where there is both the moral and medical sophistication to un- derstand the limits of medicine and the sensitivity to understand (and help de- fine) society's reasonable expectations of medicine. Within their roles as edu- cators, as mediators, and as sources for discussion of exactly these questions, broadly interdisciplinary ethics commit- tees 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 treat- ment is not scientifically futile-that court may be forced to take the real question seriously.

Notes

1. One might argue that the surgeon's only real concern is over the competency of the patient, but there is no reason outside of this medical request itself to question that competency. In- deed, we accept the fact that competent peo- ple can make unusual requests-requests that

Robert L. Schwartz

the vast majority of us find strange- and still be competent. We are even more likely to find unusual behavior (such as various kinds of ab- stinence and abnegation) consistent with com- petence 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 competence if we determine a patient's com- petence to choose a particular form of treat- ment solely by reference to the treatment choice he makes.

2. Analogously, the American Medical Associ- ation has found it unacceptable to have phy- sicians administer lethal doses of drugs to ex- ecute condemned prisoners, even if the con- demned prisoners request the administration of the drugs because the alternative methods of execution are more painful or degrading. 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 prisoner- patient may desire.

3. A great deal has been written about the Wang- lie case. Several relevant articles are found in the July-August 1991 issue of the Hastings Cen- ter Report, which includes a summary of the facts prepared by Ronald Cranford of the De- partment 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; Stein- brook. Hospital or family: who decides right to die? Los Angeles Times 1991 Feb. 17: Part A, p. 1.

4. See note 3. Colen. 1991:57. 5. Conservatorship of Wanglie, No. PX-91-283

(Minn., Hennepin Co. Dist. Ct., July 1, 1991).

6. 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." Cran- ford. Helga Wanglie's ventilator. Hastings Cen- ter Report 1991; Jul.-Aug.: 23-4.

7. 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 al- low the removal and freezing of his head be- fore 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 L.A. Law (#7D08, copyright 1990).

8. 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 rep- resent, but in fact departs from the funda- mental 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 sen- sitive in their dealings with patients, espe- cially dying patients. It promotes a model of consent that is antithetical to setting limits in a democratic, caring manner. (p. 30)

9. Colen. Judge bars letting girl in coma die. Newsday 1991 Oct. 18: News p. 4.1.

Kennedy Institute of Ethics Journal Volume 8, Number 1, March 1998 Johns Hopkins University Press

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Additional Information

Ethical Relativism in a Multicultural Society * Ruth Macklin

Abstract

The multicultural composition of the United States can pose problems for physicians and

patients who come from diverse backgrounds. Although respect for cultural diversity mandates tolerance of the beliefs and practices of others, in some situations excessive

tolerance can produce harm to patients. Careful analysis is needed to determine which values are culturally relative and which rest on an underlying universal ethical principle. A conception of justice as equality challenges the notion that it is always necessary to respect

all of the beliefs and practices of every cultural group.

Cultural pluralism poses a challenge to physicians and patients alike in the multicultural

United States, where immigrants from many nations and diverse religious groups visit the same hospitals and doctors. Multiculturalism is defined as “a social-intellectual movement

that promotes the value of diversity as a core principle and insists that all cultural groups be treated with respect and as equals” (Fowers and Richardson 1996, p. 609). This sounds like a value that few enlightened people could fault, but it produces dilemmas and leads to results

that are, at the least, problematic if not counterintuitive.

Kennedy Institute of Ethics Journal

(bio)—

Critics of mainstream bioethics within the United States and abroad have complained about

the narrow focus on autonomy and individual rights. Such critics argue that much—if not most —of the world embraces a value system that places the family, the community, or the society

as a whole above that of the individual person. The prominent American sociologist Renée Fox is a prime example of such critics: “From the outset, the conceptual framework of bioethics

has accorded paramount status to the value-complex of individualism, underscoring the

principles of individual [End Page 1] rights, autonomy, self-determination, and their legal expression in the jurisprudential notion of privacy” (Fox 1990, p. 206).

The emphasis on autonomy, at least in the early days of bioethics in the United States, was never intended to cut patients o� from their families by focusing monistically on the patient.

Instead, the intent was to counteract the predominant and long-standing paternalism on the

part of the medical profession. In fact, there was little discussion of where the family entered in and no presumption that a family-centered approach to sick patients was somehow a

violation of the patientʼs autonomy. Most patients want and need the support of their families, regardless of whether they seek to be autonomous agents regarding their own care. Respect

for autonomy is perfectly consistent with recognition of the important role that families play

when a loved one is ill. Autonomy has fallen into such disfavor among some bioethicists that the pendulum has begun to swing in the direction of families, with urgings to “take families

seriously” (Nelson 1992) and even to consider the interests of family members equal to those of the competent patient (Hardwig 1990).

The predominant norm in the United States of disclosing a diagnosis of serious illness to the patient is not universally accepted even among long-standing citizens comprising ethnic or

religious subcultures. Moreover, “respect for autonomy” as an ethical principle continues to be

misunderstood and perhaps even deliberately misrepresented. The following episode is illustrative.

An orthodox rabbi was invited to deliver a lecture on Jewish medical ethics at a medical school. The rabbi outlined some of the leading precepts of Jewish medical ethics and sought

to compare them with their counterparts in contemporary secular bioethics. Understandably,

given his commitment to Orthodox Judaism, he undertook to defend the precepts of Jewish medical ethics in those instances where they conflict with the secular version. The rabbi told

the story of a man with an abiding fear of cancer who visited his doctor because he was worried about a small growth on his upper lip. The pair had a long-standing physician-patient

relationship, and the doctor was aware of the patientʼs deep fear of cancer. When the patient

paid a return visit following a delay in which the biopsy was examined, he said to the doctor: “It isnʼt cancer, is it?” The physician, a�er a brief hesitation, reassured the patient that he did

not have cancer.

The rabbi commended the physicianʼs action, saying that secular bioethics would insist on

patient autonomy and require that the doctor tell the truth, thereby instilling great anxiety in the patient. The rabbi went on [End Page 2] to say that Jewish medical ethics does not place autonomy above all other values, noting that respect for autonomy has little place in Jewish medical ethics. Instead, the physician, as the person with medical

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