Issue 7
Should Doctors Be Able to Refuse Demands for “Futile” Treatment?
YES: Steven H. Miles, from “Informed Demand for ‘Non-Beneficial’ Medical Treatment,” The New England Journal of Medicine (August 15, 1991)
NO: Felicia Ackerman, from “The Significance of a Wish,” Hastings Center Report (July–August 1991)
ISSUE SUMMARY
YES: Physician Steven H. Miles maintains that physicians’ duty to follow patients’ wishes ends when the requests are inconsistent with what medical care can reasonably be expected to achieve, when they violate community standards of care, and when they consume an unfair share of collective resources.
NO: Philosopher Felicia Ackerman contends that it is ethically inappropriate for physicians to decide what kind of life is worth prolonging and that decisions involving personal values should be made by the patient or family.
In the typical controversy involving life-prolonging treatment, it is the patient or patient’s family who wants to stop treatment and the doctor or hospital administrator who wants to continue it. That line of cases began, most prominently, with In re Quinlan (1976) and was decided again in Cruzan v. Director of Missouri Department of Health (1990). Another scenario, however, is emerging. What happens when the patient or family demands that treatment be continued past the point that doctors or hospital administrators feel it is warranted? Families may hope for a miracle and want “everything possible” done to preserve life. In the case of “Baby L,” described by John Paris, Robert K. Crone, and Frank Reardon in The New England Journal of Medicine (April 5, 1990), pediatricians refused a mother’s request to start ventilator treatment for a severely compromised, blind, deaf, and neurologically impaired child who had spent all 28 months of her life in intensive care.
In other cases, patients or families may act out of religious convictions that life is a God-given gift that must be preserved at all costs. In her book Ethics on Call (Crown Publishers, 1992), Nancy Dubler describes the case of “Joseph,” a devoutly religious man who interpreted Jewish law to mean that life can be taken only by God, and that he must take whatever measures are available to sustain his life, no matter what suffering was entailed. There may even be cases in which a criminal prosecution may hinge on whether a patient dies or not, or there may be financial motivations to preserving life.
These cases stretch the limits of patient autonomy and come to a full stop when they reach the boundaries of professional responsibility. Just as patients are moral agents, so too are physicians. Their professional ethic begins with the Hippocratic injunction “First, do no harm.” Beyond avoiding harm, they are guided by the obligation to do good—to provide benefit to patients within the limits of their expertise. Since ancient times physicians have felt it is their prerogative to determine whether or not treatment is justified. The writings of Hippocrates and Plato warn physicians to acknowledge when their art is doomed to fail.
In modern times the Vatican’s 1980 Declaration on Euthanasia places a strong emphasis on physician judgment, pointing out that “[doctors] may . . . judge that the investment in instruments and personnel is disproportionate to the results foreseen; they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits.” The U.S. President’s Commission for the Study of Bioethical Problems in Medicine concluded in 1983 that “health care professionals or institutions may decline to provide a particular option because that choice may violate their conscience or professional judgement, though, in doing so they may not abandon a patient.” Even more recently (December 1990), the Society of Critical Care Medicine declared that “treatments that offer no benefit and serve to prolong the dying process should not be employed.”
As frequently happens in bioethics, one case—not necessarily the first to arise—serves to focus the arguments. In the area of demands for “nonbeneficial” treatment, that case involved the treatment of Helga Wanglie, an elderly Minnesota woman who suffered a series of medical problems, culminating in a year and a half spent unconscious on a respirator in a persistent vegetative state. Her physicians asked her husband to consent to withdrawing treatment; his refusal set off a chain of events described in the following selections.
Steven H. Miles, a gerontologist and ethics consultant to Mrs. Wanglie’s physicians, argues that Mrs. Wanglie was “overmastered” by her disease and that continued intensive care was inappropriate and inconsistent with reasonable medical expectations of benefit. Felicia Ackerman maintains that decisions about what lives are worth living properly fall to those who share the values of the patient—in this case, the family.
YES
Steven H. Miles
Informed Demand for“Non-Beneficial” Medical Treatment
An 85-year-old woman was taken from a nursing home to Hennepin County Medical Center on January 1, 1990, for emergency treatment of dyspnea [shortness of breath] from chronic bronchiectasis [widening of the air passages]. The patient, Mrs. Helga Wanglie, required emergency intubation [insertion of a tube] and was placed on a respirator. She occasionally acknowledged discomfort and recognized her family but could not communicate clearly. In May, after attempts to wean her from the respirator failed, she was discharged to a chronic care hospital. One week later, her heart stopped during a weaning attempt; she was resuscitated and taken to another hospital for intensive care. She remained unconscious, and a physician suggested that it would be appropriate to consider withdrawing life support. In response, the family transferred her back to the medical center on May 31. Two weeks later, physicians concluded that she was in a persistent vegetative state. . . . She was maintained on a respirator, with repeated courses of antibiotics, frequent airway suctioning, tube feedings, an air flotation bed, and biochemical monitoring.
In June and July of 1990, physicians suggested that life-sustaining treatment be withdrawn since it was not benefiting the patient. Her husband, daughter, and son insisted on continued treatment. They stated their view that physicians should not play God, that the patient would not be better off dead, that removing life support showed moral decay in our civilization, and that a miracle could occur. Her husband told a physician that his wife had never stated her preferences concerning life-sustaining treatment. He believed that the cardiac arrest would not have occurred if she had not been transferred from Hennepin County Medical Center in May. The family reluctantly accepted a do-not-resuscitate order based on the improbability of Mrs. Wanglie’s surviving a cardiac arrest. In June, an ethics committee consultant re- commended continued counseling for the family. The family declined counseling, including the counsel of their own pastor, and in late July asked that the respirator not be discussed again. In August, nurses expressed their consensus that continued life support did not seem appropriate, and I, as the newly appointed ethics consultant, counseled them.
In October 1990, a new attending physician consulted with specialists and confirmed the permanence of the patient’s cerebral and pulmonary conditions. He concluded that she was at the end of her life and that the respirator was “non-beneficial,” in that it could not heal her lungs, palliate her suffering, or enable this unconscious and permanently respirator-dependent woman to experience the benefit of the life afforded by respirator support. Because the respirator could prolong life, it was not characterized as “futile.”1 In November, the physician, with my concurrence, told the family that he was not willing to continue to prescribe the respirator. The husband, an attorney, rejected proposals to transfer the patient to another facility or to seek a court order mandating this unusual treatment. The hospital told the family that it would ask a court to decide whether members of its staff were obliged to continue treatment. A second conference two weeks later, after the family had hired an attorney, confirmed these positions, and the husband asserted that the patient had consistently said she wanted respirator support for such a condition.
In December, the medical director and hospital administrator asked the Hennepin County Board of Commissioners (the medical center’s board of directors) to allow the hospital to go to court to resolve the dispute. In January, the county board gave permission by a 4-to-3 vote. Neither the hospital nor the county had a financial interest in terminating treatment. Medicare largely financed the $200,000 for the first hospitalization at Hennepin County; a private insurer would pay the $500,000 bill for the second. From February through May of 1991, the family and its attorney unsuccessfully searched for another health care facility that would admit Mrs. Wanglie. Facilities with empty beds cited her poor potential for rehabilitation.
The hospital chose a two-step legal procedure, first asking for the appointment of an independent conservator to decide whether the respirator was beneficial to the patient and second, if the conservator found it was not, for a second hearing on whether it was obliged to provide the respirator. The husband crossfiled, requesting to be appointed conservator. After a hearing in late May, the trial court on July 1, 1991, appointed the husband, as best able to represent the patient’s interests. It noted that no request to stop treatment had been made and declined to speculate on the legality of such an order.2 The hospital said that it would continue to provide the respirator in the light of continuing uncertainty about its legal obligation to provide it. . . .
Discussion
This sad story illustrates the problem of what to do when a family demands medical treatment that the attending physician concludes cannot benefit the patient. Only 600 elderly people are treated with respirators for more than six months in the United States each year.3 Presumably, most of these people are actually or potentially conscious. It is common practice to discontinue the use of a respirator before death when it can no longer benefit a patient.4,5
We do not know Mrs. Wanglie’s treatment preferences. A large majority of elderly people prefer not to receive prolonged respirator support for irreversible unconsciousness.6 Studies show that an older person’s designated family proxy overestimates that person’s preference for life-sustaining treatment in a hypothetical coma.7–9 The implications of this research for clinical decision making have not been cogently analyzed.
A patient’s request for a treatment does not necessarily oblige a provider or the health care system. Patients may not demand that physicians injure them (for example, by mutilation), or provide plausible but inappropriate therapies (for example, amphetamines for weight reduction), or therapies that have no value (such as laetrile for cancer). Physicians are not obliged to violate their personal moral views on medical care so long as patients’ rights are served. Minnesota’s Living Will law says that physicians are “legally bound to act consistently within my wishes within limits of reasonable medical practice” in acting on requests and refusals of treatment.10 Minnesota’s Bill of Patients’ Rights says that patients “have the right to appropriate medical . . . care based on individual needs . . . [which is] limited where the service is not reimbursable.”11 Mrs. Wanglie also had aortic insufficiency. Had this condition worsened, a surgeon’s refusal to perform a life-prolonging valve replacement as medically inappropriate would hardly occasion public controversy. As the Minneapolis Star Tribune said in an editorial on the eve of the trial,
The hospital’s plea is born of realism, not hubris. . . . It advances the claim that physicians should not be slaves to technology—any more than patients should be its prisoners. They should be free to deliver, and act on, an honest and time-honored message: “Sorry, there’s nothing more we can do.”12
Disputes between physicians and patients about treatment plans are often handled by transferring patients to the care of other providers. In this case, every provider contacted by the hospital or the family refused to treat this patient with a respirator. These refusals occurred before and after this case became a matter of public controversy and despite the availability of third-party reimbursement. We believe they represent a medical consensus that respirator support is inappropriate in such a case.
The handling of this case is compatible with current practices regarding informed consent, respect for patients’ autonomy, and the right to health care. Doctors should inform patients of all medically reasonable treatments, even those available from other providers. Patients can refuse any prescribed treatment or choose among any medical alternatives that physicians are willing to prescribe. Respect for autonomy does not empower patients to oblige physicians to prescribe treatments in ways that are fruitless or inappropriate. Previous “right to die” cases address the different situations of a patient’s right to choose to be free of a prescribed therapy. This case is more about the nature of the patient’s choice in using that entitlement.
The proposal that this family’s preference for this unusual and costly treatment, which is commonly regarded as inappropriate, establishes a right to such treatment is ironic, given that preference does not create a right to other needed, efficacious, and widely desired treatments in the United States. We could not afford a universal health care system based on patients’ demands. Such a system would irrationally allocate health care to socially powerful people with strong preferences for immediate treatment to the disadvantage of those with less power or less immediate needs.
After the conclusion was reached that the respirator was not benefiting the patient, the decision to seek a review of the duty to provide it was based on an ethic of “stewardship.” Even though the insurer played no part in this case, physicians’ discretion to prescribe requires responsible handling of requests for inappropriate treatment. Physicians exercise this stewardship by counseling against or denying such treatment or by submitting such requests to external review. This stewardship is not aimed at protecting the assets of insurance companies but rests on fairness to people who have pooled their resources to insure their collective access to appropriate health care. Several citizens complained to Hennepin County Medical Center that Mrs. Wanglie was receiving expensive treatment paid for by people who had not consented to underwrite a level of medical care whose appropriateness was defined by family demands.
Procedures for addressing this kind of dispute are at an early stage of development. Though the American Medical Association13 and the Society of Critical Care Medicine14 also support some decisions to withhold requested treatment, the medical center’s reasoning most closely follows the guidelines of the American Thoracic Society.15 The statements of these professional organizations do not clarify when or how a physician may legally withdraw or withhold demanded life-sustaining treatments. The request for a conservator to review the medical conclusion before considering the medical obligation was often misconstrued as implying that the husband was incompetent or ill motivated. The medical center intended to emphasize the desirability of an independent review of its medical conclusion before its obligation to provide the respirator was reviewed by the court. I believe that the grieving husband was simply mistaken about whether the respirator was benefiting his wife. A direct request to remove the respirator seems to center procedural oversight on the soundness of the medical decision making rather than on the nature of the patient’s need. Clearly, the gravity of these decisions merits openness, due process, and meticulous accountability. The relative merits of various procedures need further study.
Ultimately, procedures for addressing requests for futile, marginally effective, or inappropriate therapies require a statutory framework, case law, professional standards, a social consensus, and the exercise of professional responsibility. Appropriate ends for medicine are defined by public and professional consensus. Laws can, and do, say that patients may choose only among medically appropriate options, but legislatures are ill suited to define medical appropriateness. Similarly, health-facility policies on this issue will be difficult to design and will focus on due process rather than on specific clinical situations. Public or private payers will ration according to cost and overall efficacy, a rationing that will become more onerous as therapies are misapplied in individual cases. I believe there is a social consensus that intensive care for a person as “overmastered” by disease as this woman was is inappropriate.
Each case must be evaluated individually. In this case, the husband’s request seemed entirely inconsistent with what medical care could do for his wife, the standards of the community, and his fair share of resources that many people pooled for their collective medical care. This case is about limits to what can be achieved at the end of life.
References
Tomlinson T, Brody H. Futility and the ethics of resuscitation. JAMA 1990; 264:1276–80.
In re Helga Wanglie, Fourth Judicial District (Dist. Ct., Probate Ct. Div.) PX-91-283. Minnesota, Hennepin County.
Office of Technology Assessment Task Force. Life-sustaining technologies and the elderly. Washington, D.C.: Government Printing Office, 1987.
Smedira NG, Evans BH, Grais LS, et al. Withholding and withdrawal of life support from the critically ill. N Engl J Med 1990; 322:309–15.
Lantos JD, Singer PA, Walker RM, et al. The illusion of futility in clinical practice. Am J Med 1989; 87:81–4.
Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance direc- tives for medical care—a case for greater use. N Engl J Med 1991; 324:889–95.
Zweibel NR, Cassel CK. Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist 1989; 29:615–21.
Tomlinson T, Howe K, Notman M, Rossmiller D. An empirical study of proxy consent for elderly persons. Gerontologist 1990; 30:54–64.
Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324:882–8.
Minnesota Statutes. Adult Health Care Decisions Act. 145b.04.
Minnesota Statutes. Patients and residents of health care facilities: Bill of rights. 144.651:Subd.6.
Helga Wanglie’s life. Minneapolis Star Tribune. May 26, 1991:18A.
Council on Ethical and Judicial Affairs. American Medical Association. Guidelines for the appropriate use of do-not-resuscitate orders. JAMA 1991; 265: 1868–71.
Task Force on Ethics of the Society of Critical Care Medicine. Consensus report on the ethics of foregoing life-sustaining treatments in the critically ill. Crit Care Med 1990; 18:1435–9.
American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Am Rev Respir Dis (in press).
From New England Journal of Medicine, August 15, 1991, pp. 512–515. Copyright © 1991 by Massachusetts Medical Society. Reprinted by permission.
NO
Felicia Ackerman
The Significance of a Wish
The case of Helga Wanglie should be seen in the general context of conflicts that can arise over whether a patient should be maintained on life-support systems. Well-publicized conflicts of this sort usually involve an institution seeking to prolong the life of a patient diagnosed as terminally ill and/ or permanently comatose, versus a family that claims, with varying degrees of substantiation, that the patient would not have wanted to be kept alive under these circumstances. But other sorts of conflicts about prolonging life also occur. Patients who have indicated a desire to stay alive may face opposition from family or medical staff who think these patients’ lives are not worth prolonging. Such cases can go badly for patients, who may have difficulty getting their preferences even believed, let alone respected.1
Helga Wanglie’s case is not as clear cut. But in view of the fact that keeping her on a respirator will prolong her life, that there is more reason to believe she would have wanted this than to believe she would not have wanted it, that medical diagnoses of irreversible unconsciousness are not infallible, and that her private health insurance plan has not objected to paying for her respirator support and in fact has publicly taken the position that cost should not be a factor in treatment decisions, I believe HCMC [Hennepin County Medical Center] should continue to maintain Mrs. Wanglie on a respirator. This respirator support is medically and economically feasible, and it serves a recognized medical goal—that of prolonging life and allowing a chance at a possible, albeit highly unlikely, return to consciousness.
The Significance of Medical Expertise
Dr. Steven Miles, ethics consultant at HCMC, has argued that continued respirator support is “medically inappropriate” for Mrs. Wanglie. The argument is based on a criterion of medical appropriateness that allows doctors to prescribe respirators for any of three purposes: to allow healing, to alleviate suffering, and to enable otherwise disabled persons to continue to enjoy life. Since keeping Mrs. Wanglie on a respirator serves none of these ends, it is argued, such treatment is medically inappropriate.
But just what does “medically inappropriate” mean here? A clear case of medical inappropriateness would be an attempt to cure cancer with laetrile, since medicine has presumably shown that laetrile cannot cure cancer. Moreover, since laetrile’s clinical ineffectiveness is a technical medical fact about which doctors are supposed to have professional expertise, it is professionally appropriate for doctors to refuse to grant a patient’s request to have laetrile prescribed for cancer. But HCMC’s disagreement with Mrs. Wanglie’s family is not a technical dispute about a matter where doctors can be presumed to have greater expertise than laymen. The parties to the dispute do not disagree about whether maintaining Mrs. Wanglie on a respirator is likely to prolong her life; they disagree about whether her life is worth prolonging. This is not a medical question, but a question of values. Hence the term “medically inappropriate,” with its implication of the relevance of technical medical expertise, is itself inappropriate in this context. It is as presumptuous and ethically inappropriate for doctors to suppose that their professional expertise qualifies them to know what kind of life is worth prolonging as it would be for meteorologists to suppose their professional expertise qualifies them to know what kind of destination is worth a long drive in the rain.
It has also been argued that continued respirator support does not serve Mrs. Wanglie’s interests since a permanently unconscious person cannot “enjoy any realization of the quality of life.”2 Yet were this approach to be applied consistently, it would undermine the idea frequently advanced in other life-support cases that it is in the interests of the irreversibly comatose to be “allowed” to die “with dignity.” Such people are not suffering or even conscious, so how can death benefit them or serve their interests? The obvious reply in both cases is that there is a sense in which it is in a permanently comatose person’s interests to have his or her previous wishes and values respected. And there is some evidence that Mrs. Wanglie would want to be kept alive.
But why suppose doctors are any more obliged to serve this want than they would be to help gratify some nonmedical desire such as a desire to be remembered in a certain way? An obvious answer is that prolonging life is a medical function, as is allowing a possible return to consciousness. Medical diagnoses of irreversible coma are not infallible, as the recent case of Carrie Coons clearly demonstrates. The court order to remove her feeding tube, requested by her family, was rescinded after Mrs. Coons regained consciousness following five and a half months in what was diagnosed as an irreversible vegetative state.3 Such cases cast additional light on the claim that respirator support is medically inappropriate and not in Mrs. Wanglie’s interests. When the alternative is death, the question of whether going for a long-shot chance of recovering consciousness is worth it is quite obviously a question of values, rather than a technical medical question doctors are especially professionally qualified to decide.
The Significance of Quality of Life
Medical ethicists who take into account the possibility that seemingly irreversibly comatose patients might regain consciousness have offered further general arguments against maintaining such patients on life-support systems. One such argument relies on the fact that “the few patients who have recovered consciousness after a prolonged period of unconsciousness were severely disabled,”4 with disabilities including blindness, inability to speak, permanent distortion of limbs, and paralysis. Since many blind, mute, and/or paralyzed people seem to find their lives well worth living, however, the assumption that disability is a fate worse than death seems highly questionable. Moreover, when the patient’s views on the matter are unknown, maintaining him on a respirator to give him a chance to regain consciousness and then decide whether to continue his disabled existence seems preferable to denying him even the possibility of a choice by deciding in advance that he would be better off dead. Keeping alive someone who would want to die and “allowing” to die someone who would want a chance of regained consciousness are not parallel wrongs. While both obviously go against the patient’s values, only the latter has the additional flaw of doing this in a way that could actually affect his conscious experience.
The other argument asserts that since long-term treatment imposes emotional and often financial burdens on the comatose patient’s family and most...
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