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End-of-Life Care

PERSPECTIVE

Terri Schiavo, Son Hudson, And ‘Nonbeneficial’ Medical Treatments

Abstract

 
Two disputed cases about withholding life support (Terri Schiavo and Son Hudson) call for greater public discussion. Confusion arises from intermixing three kinds of cases: those (1) in which demanded treatment is physiologically futile, (2) involving competition for scarce resources, and (3) in which the treatment would likely achieve the patient’s goals although the clinician perceives those goals to be valueless. This Perspective argues that clinicians should unilaterally refuse the first but do not have legitimate roles in blocking access to the second and third. Absent scarcity, patients should have access to effective life-prolonging treatments even if clinicians see no value in them.

Modern medical technology has not only provided opportunities to save countless lives and relieve untold suffering, it has also fed people’s compulsion to preserve life—even at great costs and when most people would conclude that no good is served. This, in turn, has forced thoughtful providers, parents, and politicians to think about whether these efforts and expenditures serve any purpose.

The Settled Issues

Top The Settled Issues Three Controversial Cases The Study By Gilmer... NOTES

 
Some of the easier issues are now pretty well settled. Karen Ann Quinlan’s case, dating from 1975, made it clear that patients and their surrogates have the right to refuse life-prolonging medical treatments, as long as those treatments are offered for their own good.⁴ Since 1985 we have known from the case of Claire Conroy that patients may refuse medically supplied nutrition and hydration.⁵ Not only that, surrogates may refuse it on behalf of incompetent patients, as long as it is clear that the treatments are a burden to the patient or at least are not offering benefit. Roman Catholic moral theologians have said as much for decades.⁶

In the United States, the spouse is the next-of-kin and presumed surrogate for the patient until it is proven that the spouse is making choices that are clearly contrary to the patient’s interest. Even well-meaning, sincere parents are limited to the role of making sure that the spouse acts within reason in articulating the patient’s wishes (if they are known) and what is in the patient’s best interest if the patient’s wishes cannot be determined. They may (and should) seek judicial review if they believe that the spouse is not acting appropriately, but the court’s task is merely to assure that the spouse is acting in accord with the patient’s wishes (if they are known) or the patient’s interest (if they are not).

Three Controversial Cases

Top The Settled Issues Three Controversial Cases The Study By Gilmer... NOTES

 
Unfortunately, decisions are sometimes complex and cause muddled thinking. We rely on courts to sort out matters of fact: what the patient wanted, and whether or not the surrogate is going beyond what is reasonable. Our society’s confusion stems in part from the fact that there are three separate kinds of cases, and they require very different principles for resolution.

Physiologically futile treatment. First, sometimes patients or surrogates ask for treatments that cannot produce the outcomes they are seeking. In these cases, it is appropriate for the clinician to refuse, on the factual basis that the result cannot be obtained. For example, physicians do not need to provide antibiotics for viral infections or ventilatory support for a patient who has suffered a half-hour of asystole. Clinicians who refuse are subject merely to the normal standards of peer review and malpractice to verify that their claims are based on sound medical science. In the words of the theorists who have shaped the debate over so-called futile care, these treatments are physiologically futile.

Limits based on scarce resources. Two other groups of treatments can, in fact, both produce the results desired by the patient. They are beneficial when evaluated by the subjective standard of the patient’s own values. That does not automatically mean that clinicians must provide the treatments. Some of these may consume scarce medical resources to produce what the patient desires. These treatments constitute a second category separate from treatments that are physiologically futile. In these cases, clinicians who are Hippocratic will strive to do what benefits the patient, but responsible health systems will impose limits that protect scarce resources.

Hospitals, health systems, and insurers have the right to develop policies and procedures that set morally legitimate limits on the use of resources that are judged to have lower priority. Treatments that impose enormous costs for the amount of benefit they will yield might have low priority. They are sometimes called "not costworthy."⁷ Sometimes the resource that is scarce is an intensive care unit (ICU) bed or an organ for transplant. In these cases, health care institutions must also place limits, notwithstanding the patient’s plausible claim that the resource would provide benefit. Thus, the United Network for Organ Sharing (UNOS) has developed complex formulas based on considerations of equity and efficiency for deciding who should get a heart or liver when it becomes available. The patient’s clinician has a Hippocratic duty to fight for the welfare of his or her patient, but sometimes the system should be structured so that the clinician must lose. The physician should lose when some other patient has a more just claim on the scarce resource. Clinicians may understandably be upset when their patients lose in these allocations, but when a resource is scarce, someone must lose in order for others with higher priority to be helped.

Normative futility. A third group of patients sometimes get confused with the first two groups. Sometimes clinicians believe that treatments sought by their patients will not be beneficial even though they agree that the treatments will produce the effects sought by the patient or surrogate. For example, a family member may seek ventilatory support or cardiopulmonary resuscitation (CPR) for a permanently unconscious patient on the grounds that the patient had clearly expressed, while competent, that he would want these interventions. Or the conscious, terminally ill patient may insist on CPR even though she has been told she has only a short time to live and will not leave the hospital alive.

Physicians evaluating these requests may make the value judgment that prolonging unconscious or imminently terminal life under these circumstances serves no purpose. In the case of the still-conscious, terminal patient, the clinician may resist inflicting an extra burden on the patient who will soon be dead. Many (but not all) clinicians would make these value judgments opposing continued treatment. Many (but not all) lay people would reach the same conclusion.

That is the value judgment I would make as well. Not all of us make that evaluation, however. About 10 percent of the U.S. public concludes that it is worth preserving life even when it is permanently unconscious or will be both inevitably short and burdensome.⁸ This is a minority view, but it is not objectively wrong. Evaluating these treatments is fundamentally subjective. There is no definitive or scientific proof that it is wrong to value unconscious life. There is no medical basis for concluding that it is not worth living an inevitably short, painful life. Most of us do not see it that way (and most physicians concur), but health professionals and lay people who do see value in preserving such life are not objectively wrong. They are simply different.

The Study By Gilmer And Colleagues

Top The Settled Issues Three Controversial Cases The Study By Gilmer... NOTES

 
That is why the paper by Todd Gilmer and his colleagues is so provocative. It claims, based on a randomized controlled trial (RCT), that ethics consultations reduced "nonbeneficial" treatments in the ICU. These consultations supposedly "resolved conflicts that would have inappropriately prolonged nonbeneficial or unwanted treatments."

This study, while potentially providing a basis for offering critically and terminally ill patients the benefits of ethics consultation, is controversial on several counts. It is noteworthy that the investigators could locate seven major hospitals for whom hospital personnel could recognize a potential for an ethics consultation and still claim that not recommending such a consultation was "usual care."

The study is also controversial because it is hard to imagine how the patients in this study could have given informed consent to take part. It is controversial to be evaluating ethics consultation by the criterion of whether it saves hospitals money. Most of all, it is controversial once we realize that there are three separate kinds of life-prolonging care decisions and that the investigators did not distinguish among them. It is not clear how the authors could establish that the changes in patient care correlated with ethics consultation eliminated truly "nonbeneficial" care. The authors defined nonbeneficial care as "life-sustaining treatments delivered to patients who ultimately did not survive to hospital discharge." Many of us would tend to agree that life-prolonging efforts that do not lead to hospital discharge may not be worth it much of the time, but there is no way the authors can establish that this is always the case. Some patients (or their surrogates) may see value in preserving life even if it does not lead to hospital discharge. Some patients may be waiting for relatives to arrive to say their final goodbyes. Some may be waiting for life insurance waiting periods to pass, to provide important benefits for family members. Some may simply be in that minority who believes that it is important to preserve life to the very end.

Had the authors claimed that ethics consultation eliminates days of hospital stay that do not lead to leaving the hospital, that would have been an objective and accurate claim. Had they gone on to say that they see no benefit in preserving such life, that would have been subjective but accurate. For them to claim that they know there is no value in such days of life goes beyond what the research showed.

That some patients may have reasons to value life prolongation does not lead to the conclusion that they automatically have a right to the interventions at stake. Some demanded treatments might be in the two categories of treatments that health systems should not provide. Some might be demonstrated to be physiologically futile in producing the desired outcome. Doctors have the authority to unilaterally refuse to provide such treatments. Some may require scarce medical resources whose use jeopardizes the welfare of other patients. Hospital administrators have the authority to unilaterally block access to such treatments (even though the patients’ clinicians ought to do what they can to promote their patients’ welfare). Some, however, may be in that third category: treatments whose effects patients value even though their clinicians consider the outcomes useless. Doctors do not have an automatic right to impose their values on such patients. As long as the treatments are not futile in producing the effect the patient desires and the interventions really will preserve life, clinicians, ethics consultants, and ethics committees need to be very careful in using their authority to dissuade patients and surrogates from choosing these interventions. Almost all of these cases that have been litigated in courts have led to the conclusion that patients have a right to receive life support in such cases. Hospital and insurance company administrators are within their rights to constrain the use of truly scarce resources, but often patients or their insurers have been ready and willing to pay the costs and hospitals have admitted that no other patients are placed in jeopardy by the provision of these life-prolonging treatments.

Physicians, administrators, and ethics consultants need to be very careful in imposing their judgments about which treatments are beneficial. That is why the Texas law that authorizes physicians to unilaterally block treatments that will be effective in prolonging life (at least temporarily) is so dangerous. It authorizes physicians to impose their value judgments on patients in cases when doing so will mean the death of a patient who could live longer. No doctor should have that power. That is why the use of ethics consultation to reduce days of stay in a hospital is so dangerous. Doctors have no basis for claiming that all life-prolonging treatments that fail to produce discharge from the hospital are "nonbeneficial." Only when the treatments will not produce effects sought by the patient or surrogate or when administrators determine that other patients have higher-priority claims to the resources should limits on life-prolonging treatments be imposed on patients. If the treatments will have an effect, we cannot claim that we have established that these treatments are without benefit. We can only claim that sometimes patients’ interest in what they consider a benefit must be sacrificed to help others with stronger claims. Generally, clinical caregivers with direct responsibility for patients should not be in the role of compromising their patients’ welfare as subjectively determined by the patient, and ethics consultants should not use their authority to promote the value judgment that life-prolonging treatment is sometimes nonbeneficial. That is the moral responsibility of society or its agents administering health programs.

Editor's Notes

 
Robert Veatch (veatchr{at}georgetown.edu) is professor of medical ethics at the Kennedy Institute of Ethics, Georgetown University, in Washington, D.C.

NOTES

Top The Settled Issues Three Controversial Cases The Study By Gilmer... NOTES

 

1. An Act for the Relief of the Parents of Theresa Marie Schiavo, Public Law 109-3, 109th Cong. 1st sess. (21 March 2005).
2. Texas Health and Safety Code, Chapter 166, Subchapter A, Sec. 66.052.
3. T. Gilmer et al., "The Costs of Nonbeneficial Treatment in the Intensive Care Setting," Health Affairs 24, no. 4 (2005): 961–971.[Abstract/Free Full Text]
4. In re Quinlan, 70 N.J. 10, 355 A. 2d 647 (1976), cert. denied sub nom.; Garger v. New Jersey, 429 U.S. 922 (1976), overruled in part; and In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985).
5. In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985).
6. C.J. McFadden, Medical Ethics, 6th ed. (Philadelphia: F.A. Davis, 1967), 245.
7. P.T. Menzel, Medical Costs, Moral Choices: A Philosophy of Health Care Economics in America (New Haven, Conn.: Yale University Press, 1983).
8. See, for example, L.A. Siminoff, C. Burant, and S.J. Youngner, "Death and Organ Procurement: Public Beliefs and Attitudes," Kennedy Institute of Ethics Journal 14, no. 3 (2004): 217–234.[Medline]

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