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In re Helga Wanglie.

In this issue, At Law returns as a regular feature of the Report under the authorship of Alexander Morgan Capron, Henry W. Bruce Professor of Law and Medicine at the University of Southern California. A distinguished legal scholar, Prof. Capron served as executive director of the President's Commission for the StudY of Ethical Problems in Medicine and Biomedical and Behavioral Research and has written extensively on issues in bioethics.

Helga Wanglie was an active, well-educated woman of eighty-five when on 14 December 1989 she tripped over a rug and broke her hip. With that injury she began successive treatments at a series of acute care, rehabilitation, and nursing facilities, during which she had several cardiopulmonary arrests. For more than a year-from 23 May 1990, when she suffered severe anoxia, until 4 July 1991, when she died-Mrs. Wanglie lay unconscious in a persistent vegetative state (PVS), her breathing sustained by a respirator and her nutrition supplied through a tube.

This sort of extended dying has regrettably become an all-too-familiar tale in our courtrooms. Many judges have been called upon to approve the decisions of seriously ill patients' next of kin to withdraw life-sustaining procedures. Helga Wanglie's dying also became a court case, but with an unusual twist: when Mrs. Wanglie's husband of fifty-three years refused to consent to the withdrawal of her treatment, a Minnesota district court judge was asked to name another guardian in his place.

The petition to replace the guardian was filed by Steven B. Miles, a gerontologist who served as an ethical consultant to Mrs. Wanglie's physicians at the Hennepin County Medical Center (HCMC). On 1 july, judge Patricia L. Belois ruled that Miles has offered no evidence that Oliver Wanglie is incompetent to discharge the trust as Conservator of the Person of his wife. "Judge Belois therefore denied Dr. Miles's petition and granted the petition filed by Mr. Wanglie, who the judge found was "the most suitable and best qualified" among available guardians.

The narrow, fact-based nature of Judge Belois's decision, coupled with Mrs. Wanglie's death three days later, might seem to render the case of interest only to those directly involved. Yet the dramatic statement by the physicians, when they first announced their intention to go to court, that they did not "want to give medical care they describe as futile,"(1) secured the dispute a lasting niche in bioethics lore as the case that made medical futility front-page news. Since the issues implicated will survive longer than Helga Wanglie did after the court ruled in her husband's favor, it is important to be clear about what really was-and wasn't-involved. The case turns out to be a murky glass for viewing the issue of futility. What Did She Want?

Before futility emerged as a full-blown issue at Helga Wanglie's bedside, another issue was in dispute: what views had she held about life-prolonging treatment under the circumstances? Physicians at HCMC have asserted that prior to December 1990, when they pressed Mr. Wanglie to allow treatment to be withdrawn, he told hospital staff that his wife had not discussed these issues, and that her wishes were a 'black box."(2) The implication is clear. Oliver Wanglie knowingly or unknowingly prevaricated; continuing life-support was merely his wish, not a view his wife ever voiced.(3)

The astonishing aspect of this case-especially the insinuation from HCMC physicians that their uncertainty about Helga Wanglie's wishes was her husband's fault-is that she was still competent while being treated at HCMC for the first four months of 1990. If the attending physicians at a leading hospital like HCMG-with a long-standing ethics committee and several nationally known ethicists on staff-fail to engage patients like Mrs. Wanglie in discussions about their treatment wishes, then one clear implication of the case is that the Patient SelfDetermination Act may indeed be beneficial. Perhaps there will be fewer Helga Wanglie if facilities ensure that patients upon admission learn about "advance directives"-as well as about the mess that can occur when they fail to make their wishes clear. Surrogate Decisionmaking

Of course, there is now no way to know whether asking Mrs. Wanglie would have revealed views about life-prolonging procedures different from what her husband believed she would have wanted. That is yet another reason why the Wanglie case is not a very tidy setting for examining the futility issue.

Although a handful of the cases about terminating life-support have been brought by competent patients like Elizabeth Bouvia and William Bartling, most have involved next of kin and other surrogates of patients who lack decisionmaking capacity. Indeed, the law in this field mostly concerns the standards for surrogate decisionmaking; the only assessment of terminating treatment by the United States Supreme Court went no further than holding that Missouri did not violate the Constitution in requiring clear and convincing evidence of an incompetent patient's wishes before life-sustaining medical interventions may be withdrawn.(4)

The upshot of the statutes and court cases has been to constrict decisionmaking by surrogates much more tightly than by competent adults for themselves, where the law generally recognizes a right to forgo any medical procedure, providing that the patient's choice does not directly imperil the life or health of another person without his or her consent. The reasons for placing limits on surrogates are not hard to understand-for example, doubts that surrogates can really know what a patient would want under the medical circumstances, concern that surrogates may have ulterior motives for their decisions, and so forth. One basic precept-that a surrogate ought not be allowed to use a patient merely as a means to achieve the surrogate's ends-becomes very complicated to apply when the patient is permanently unconscious. In that situation, it is doubtful that the patient has interests (other than avoiding a mistaken prognosis of permanency), and the only remaining interests are usually those of the next of kin.(5)

Nonetheless, even with PVS patients the law does not give surrogates the same freedom as patients have to make their own health care decisions for reasons that are idiosyncratic or that strike others as wrong-headed. Thus, when a surrogate asks physicians to continue treatment that they believe is futile or that the average reasonable person would reject, the unavoidable question is whether the surrogate is truly deciding as the patient would have. Alternatively-as the HCMC physicians wondered-is the patient's continued existence serving some psychic or other need of the surrogate without contributing to the patient's good? In this light, Wanglie seems to be more about surrogate decisionmaking than about futility. Protecting Scarce Resources

Another aspect of the case that separates it from the typical situation in which futility is likely to be at issue was the absence of economic concerns on the part of the treating physicians and hospital. Except in cases in which a procedure is pathophysiologically irrelevant, a conclusion that it is futile often implies a comparative judgment: while this intervention produces some effect (however fleeting or negligible) in this patient, the outcome seem less valuable than what could be produced were the same effort expended on another patient.

In an era when many health care facilities have an economic stake in the efficient use of resources and when insurance companies likewise attempt to constrain physicians to reduce unnecessary" interventions, acolytes of cost containment will increasingly be found near the bedsides of patients with poor prognoses pressing this new credo of futility. None appear to have spoken up, however, regarding Mrs. Wanglie, who was insured by a generous and uncomplaining plan. So the advocates of ceasing treatment in her case were

those-physicians and hospital-whom one would usually expect to be advocates for the patient rather than for "the system." Futility as an Issue of Power

Mrs. Wanglie's physicians eventually chose to raise the issue only obliquely, by challenging her husband's suitability as guardian rather than by asking the judge to approve their medical determination. While this hasn't stopped commentators from treating Wanglie as a case about medical futility, it has muddied the waters.

Like many seemingly simple concepts, futility is deceptive. When used in the context of decisionmaking about medical care, its apparent content-that is, a technical judgment that a particular intervention will not produce the intended result-may be less relevant than its implications for the distribution of power among the potential participants in the treatment decisions.

Despite the ambiguity of the term, futility has been invoked in many in statutes and court decisions, as well as medical guidelines. For example, medical standards for cardiopulmonary resuscitation (CPR) dating to 1974 state it is "not indicated" where an arrest is prolonged enough to establish "the futility of resuscitative efforts."(6) Likewise, in the guidelines accompanying the current "Baby Doe" regulations, the Department of Health and Human Services recognizes exceptions to the general obligation to provide life-support to infants when doing so would be "futile" or "virtually futile" and inhumane.

The 1983 decision of a California court of appeal in Barber v Superior Court is one of the best known cases in which futility was invoked to support the conclusion that a physician has no duty to continue treatment, once it has become futile in the opinion of qualified medical personnel." Drawing on a report of the President's Commission for the Study of Ethical Problems in Medicine, the court defined as futile those procedures that lack the ability to "improve the prognosis for recovery."

Yet the issue in Barber was whether physicians could be prosecuted for murder for following the instructions of the decedent's family and discontinuing life-sustaining food and fluids by tube. Between the state and physicians, the case favors the authority of physicians, but it says nothing about how conflicts between patients and their physicians should be resolved. Indeed, without any sense of contradiction, the Bayber court went on to hold that the decision not to treat the patient in that case rested in the hands of his family. Since the family had authorized the withdrawal of the feeding tube apparently based in turn upon the physicians' prognosis that the patient would not recover), the state could not prosecute the physicians for wrongfully causing" the patient's death.

The issue of futility is thus an example of what one might term the problem of ends. In the case of futility, the issue of ends has two aspects. As always, one must ask: why is this definition being framed? Attempts to define futility can never be legitimate outside a decisionmaking framework. As Daniel Callahan recently suggested, this puts the focus on who will frame the definition and who will apply it.(8)

Second, when one has determined the purpose for which the definition of futility is framed, that definition itself must be cast in terms of patient outcome. The most basic problem with the emergence of futility as a central concept in medical decisionmaking is precisely that it often fails to provoke those who apply it to ask the underlying question: futile for what end?

It is understandable that the physicians in Wanglie believed that stopping treatment was justifiable. Not only medical authorities but many courts have reached this conclusion in similar circumstances before. To justify their rulings in favor of the surrogates who have sought to discontinue life-support, judges have frequently described patients' conditions in very grim terms. Indeed, some of these rulings create the impression that once permanent unconsciousness has been diagnosed, further treatment is useless as a matter of law ! Statutes using the term futility have tended to be more precise and limited. For example, an act on DNR orders recently adopted in Georgia (S.B. 93) defines medical futility as a resuscitative effort that "will likely be unsuccessful in restoring cardiac and respiratory function or will only restore cardiac and respiratory function for a brief period of time so that the patient will likely experience repeated need for cardiopulmonary resuscitation over a short period of time." Granted that brief, short, and likely all need to be quantified, at least there is no basis for equating futility with a condition of continued existence that does not seem worth sustaining in the eyes of the medical team.

The "qualitative" definition of futility recently offered by Lawrence Schneiderman, Nancy Jecker, and Albert Jonsen also illustrates the unspoken assumption made by many physicians. Their definition rests on the view that "merely preserving permanent unconsciousness or ... failing to end total dependence on intensive medical care"(9) are ends inherently outside legitimate medical practice. Yet as the Wanglie case makes apparent, some people value other outcomes. Indeed, notwithstanding the growing willingness of physicians to stop treatment in some cases, a majority of physicians have until recently routinely produced outcomes for patients that Dr. Schneiderman and his colleagues would ride out.

I would, of course, strongly agree that it is high time for medicine to reexamine its assumptions about what constitutes benefit to patients. But that process must occur in the context of each clinical relationship in which patients' values determine what benefit means for each of them as individuals. If, as I believe, the growing use of the concept of futility is dangerous because it conceals the need to know ends, then Wanglie is a poor vehicle to explore this issue, because Helga Wanglie's physicians had explicit conversations with her family about whether the results that further treatment would provide were sufficient to justify the effort. The real peril is that physicians will unilaterally decide to limit or cease treatment (for example, to write a DNR order) based on their own assessments of what outcomes are worth pursuing, without ever affording their patients or patients' surrogates the opportunity to join them in the process of making such decisions. References

1. "At Odds with Family, Hospital Seeks to End Life, "Chicago Tribune 10 January 1991.

2. Ronald E. Cranford, "Helga Wanglie's Ventilator," Hastings Center Report 21, no. 4 (1991): 23.

3. Judge Belois apparently did not accept this view. She found that Mrs. Wanglie had discussed "the meaning of life and the use of life-sustaining medical treatments" with her husband and son from time to time." The judge also noted, however, that Mrs. Wanglie had not considered the exact circumstances that arose or what to do if she become ventilator-dependent. In re Wanglie, No. PX-91-283, Hennepin Co., Minn., Dist. Ct., Probate Div., filed 1 july 1991, at p. 2.

4. Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841 (1990).

5. See President's Commission for the Study of Ethical Problems in Medicine and Biomedical Research, Deciding to Forego LifeSustaining Treatment (Washington, D.C.: U.S. Government Printing Office, 1983), pp. 181-86.

6. National Conference on Standards for Cardiopulmonary Resuscitation (CPR) and Emergency Cardiac Care (ECC),JAMA 227 (1974): 837,864.

7. 147 Cal. App. 3d 1032, 195 Cal. Rptr. 484 (1983).

8. Daniel Callahan, "Medical Futility, Medical Necessity: The Problem-Without-AName," Hastings Center Report 21, no. 4 (1991): 30-35.

9. Lawrence J. Schneiderman, Nancy S. Jecker, and Albert R. Jonsen, "Medical Futility. Its Meaning and Ethical Implications, "Annals of Internal Medicine 12, no. 12 (1990):949-54.
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Title Annotation:a long term patient in vegetative state whose husband chose not to terminate care
Author:Capron, Alexander Morgan
Publication:The Hastings Center Report
Article Type:column
Date:Sep 1, 1991
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