Mark Siegler, MD, Director, Center for Clinical Ethics, University of Chicago

Jack Provonsha Lectureship
School of Medicine Alumni Postgraduate Convention
February 23, 1991


The American bioethics movement, developed in the 1960s, was strongly nurtured by religious concerns and motivations. These concerns emphasized personal values and beliefs along with religious and cultural traditions. The religious perspective emphasized care, competence and compassion, the three Cs essential for any adequate health system. Over the past ten or twenty years the American bioethics movement has been secularized in three distinct assaults on its original religious foundations. The latest assault, driven primarily by economic motivations and social utility, is surely the most threatening, not just to the bioethics movement but to the practice of medicine. I will illustrate this by focusing on how our society deals with end-oflife clinical decisions particularly in light of the Cruzan decision (endoflife decisions for incompetent patients).

My point here is that the process our society employs to make decisions for very sick and incompetent patients-our most vulnerable patients-will strongly influence decisionmaking for all patients and determine the kind of medicine and medical profession we have in the future.

I suggest that 1990 was a watershed year in American bioethics. We witnessed two events: the Supreme Court decision in the Cruzan case and Congress passing a bill called "The Patient's SelfDetermination Act of 1990." These will be regarded as the high-water mark of patient self determination. From now on, I predict, we will see increasing efforts to withdraw decision making authority, initially from incompetent patients and their families and then from competent patients also. Decisionmaking control will be taken from individuals by several methods, but they will have the same goal: to profoundly reduce the strength of individuals' personal subjective values and to place enormous decisionmaking authority in the hands of third parties. Not third parties, mind you, like family or even physicians, but third parties such as payers, regulators and government.

My plan then is to examine these two related theses in the following way. First, I would like to look at the religious roots and origins of the American bioethics movement and to briefly note the three secular assaults that have been directed against traditional bioethics. Those assaults are a valuefree philosophical tradition, a legalistic tradition, and most recently economics and efficiency.

The relationship between medicine and theology has been an intimate and even inseparable one going back to the Hippocratic Oath and forward into the Christian era. A similar close relationship existed between theology and the renewed interest in contemporary bioethics of the 1960s. First, a tradition of medical ethics had been sustained over the past fifty or seventyfive years in denominational medical schools and hospitals. Second, many of the original teachers of bioethics in the 1960s were chaplains or clergy who served as campus ministers in medical schools. Many of them shared an interest in influencing the education of physicians to make them more sensitive to human values and ethics. And finally, most of the early intellectual leaders of the American bioethics movement were theologians such as Richard McCormick, Joseph Fletcher, Paul Ramsey, James Gustafson. Their students included James Childress, Gene Outka, Al Johnson and Stanley Hauerwas. Their interest in ethical issues in medicine and in human values in medical education was based on their spiritual and ethical concerns.

That first generation of American bioethicists has gradually been supplanted or, at the least, heavily complemented by a second wave of academics whose primary disciplines have been philosophy, law, and more recently, economics and health policy. The shift in focus from a theological perspective to this legal, philosophical, economic focus is a phenomenon I refer to as the secularization of American bioethics. Theological understandings of medical ethics emphasized a sense of community and the obligations and responsibilities of physicians to individuals and the community. It enunciated an ethic of giving and receiving, of caring, of helping, and the moral principle-a medical responsibility principle premised on covenantal, interpersonal and community relationships between physicians and patients and between the medical profession and society. This was an ethic of medicine appropriate to a human relationship between friends or colleagues. It emphasized the values and beliefs of the participants, both patients and physicians.

By contrast, the secular movement headed up by philosophers, legal scholars and economists, has stressed a legalistic and efficiency model of medical ethics which holds that moral conduct is a matter of following rules, and moral relationships consist of duties and rights determined by these rules. This model, emphasizing social utility, is appropriate to govern interactions of strangers and of bureaucratic relationships within institutions and organizations.

I have deep concerns that a legalistic view of medical practice is a limiting, inadequate, and undesirable conception. If medicine is conceived as a practice of strangers-or even worse, estranged-and if it ignores or overrides the values of individuals, if it arouses suspicion and distrust on the part of patients and doctors, then medicine will be controlled and regulated. Rules and laws will be substituted for the kind of trust and confidence that previously existed between doctor and patient. Unfortunately, this creates a downward spiral in the relationship between doctors and patients. Distrust encourages rules and regulations which tend to arouse the enmity of the professional and result in mutual suspicion and recrimination. It would be more appropriate to bring back to medical ethics the theological perspective on medicine as a covenantal relationship between doctor and patient. This model would supplant legalistic theory with a system premised on promisekeeping, indebtedness, justice, fidelity, and human responsibility, and would respect individual values and preferences.

I turn now to what I call "The Three Ages of Medicine." The history of the doctorpatient relationship in Western medicine can be divided into three periods. The first period I call "The Age of the Doctor." It lasted from about 500 B.C. to 1965 A.D. The second period I call "The Age of the Patient" from 1965 to October 1, 1983, which some of you may remember is the date on which DRGs became the law of the land. The current age I call "The Age of the Payer." Sometimes I call it "The Age of Bureaucratic Parsimony" The key point about the three ages is, Who calls the shots? In the first two ages the doctor and the patient made the decision. Whatever tension emerged had to do with where, within the relationship between the two, ultimate power would reside, although this was usually settled by negotiation and accommodation.

But the third age, I suggest, is different. In this, the age of the payer, the decisionmaking power has begun to shift from those who provide care-doctors, hospitals, patients and their families-to those who pay for the care. The payers are both private and government payers who increasingly demand accountability and limit decision choices. In contrast to the first two ages, the new system limits decisionmaking freedom for both doctors and patients. It is based increasingly on efficiency and economics and social utility, which have emerged rapidly as key elements in decisionmaking.

Against this backdrop of the history of the doctorpatient relationship, I wish to discuss endoflife decisions for incompetent patients. A case is now unfolding in St. Paul, Minnesota-the case of Helga Wanglie, an eightysevenyearold woman who has been lying in the Hennepin County Hospital in a persistent vegetative state since May, 1990. Her physicians recommend that the ventilator that keeps her breathing be stopped, but Mrs. Wanglie's family, consisting of her husband and two adult sons, refuse to authorize stopping the ventilator.

Why did they refuse? Her husband said that he did it to adhere to Mrs. Wanglie's strong religious beliefs and her previously expressed wishes. He is quoted in a court document as saying that she told him, "If I cannot speak for myself, don't do anything to shorten or take my life." Now the hospital and doctors are planning to go to court to override Mr. Wanglie's expressed wishes for his wife on the grounds that Mrs. Wanglie's treatment is futile.

Decisionmaking for incompetent patients is a troubling ethical problem. In fact, to my mind, it has been the troubling ethical problem for the last fifteen or twenty years, at least since the Karen Quinlan case of 1976. Incompetent patients include not only patients like Mrs. Wanglie, but also patients who, though conscious, have severe and irreversible brain impairment such as Alzheimer's disease or even congenital mental retardation. There are large numbers of such patients. Because these patients cannot speak for themselves, courts and legislatures, at least since 1976, have developed an approach to endoflife decisions that allows parties-surrogates-to make decisions for the incompetent person.

The underlying assumption that permits surrogate decision making in this country is that incompetent patients have a right to selfdetermination similar to that of competent patients. The basic rule here is that one employs a substitute judgment standard. By substitute judgment, the courts have meant that one tries to substitute one's own judgment for what the judgment of the nowincompetent would be if the incompetent were able to speak for himself or herself. There are ways we can discover the incompetent person's judgment. People can write us things in advance such as Living Wills or other directives. People can talk to us or to their doctors and say what they want, or they can live a life with a set of values and beliefs that can be perceived by a third party.

There is an alternative standard that most courts have shied away from whenever a substitute judgment could be made: the bestinterest standard. The substitute judgment standard is a subjective standard. It doesn't say, What would most people want in these circumstances? Rather, it says, What would Mrs. Wanglie want in these circumstances? based on who Mrs. Wanglie is and what her values structure is.

The bestinterest standard is believed to be an objective standard. Here one presumably doesn't know or perhaps knows but doesn't care, what the subjective values of the individual are and imposes some external notion of the person's best interests. We're not talking about trivial decisions in these cases; we're talking about life and death. We're dealing with the discontinuation of life support so that someone may die. The bestinterest standard asks, What objective criteria would incline me to discontinue life support in this case? What is important is that these be regarded as fair, evenhanded, and objective.

Up until now, courts have shied away from the bestinterest standard except in instances where the individual's subjective values are unknown. Those instances might be John Doe cases brought to an emergency room without known relatives, and irreversibly incompetent. Or they might be persons born with profound mental retardation and never able to express their wishes. In cases like these the courts might resort to an objective standard.

As a society we may be making a good game of subjective standards-selfdetermination standards-while moving increasingly and rapidly towards an objective set of standards for decisionmaking.

I think that 1990 was the high point of the subjective standard of patient self-determination. First there was Nancy Cruzan, a thirtythreeyearold woman who died in December, 1990, when her feeding tube was discontinued. Miss Cruzan was twentyfive when she suffered a severe head injury in an automobile accident, from which she never regained consciousness. She was cared for in a Missouri longtermcare hospital where her main form of support was good nursing care and food delivered through a gastrostomy tube. After four years her parents asked the nursing home to stop Miss Cruzan's feeding tube to allow her to die. When the nursing home refused, the parents took the case to court. After a series of legal battles, the case made its way to the United States Supreme Court.

The Supreme Court's decision stated loudly and clearly that physicians should respect the wishes of competent adult patients. This was the first time a major Federal court had constitutionalized the competent patient's right to make his or her own medical decisions. By doing that, the Cruzan case provided Federal constitutional validation to the way medical practice had been evolving for the past thirty or forty years from an earlier emphasis on medical paternalism to patient's active participation in making personal healthcare choices. Seven of the nine judges indicated that the primary issue in such cases should be the patient's previously expressed wishes or intentions. The majority opinion emphasized that a major concern was to insure that the integrity and personal character of the nowincompetent patient would be respected. Justice Renquist's majority opinion read: "The choice between life and death is a deeply personal opinion of obvious finality. We believe Missouri may legitimately seek to safeguard the personal element of this choice through the imposition of heightened evidentiary requirements." But the court in Cruzan is searching for that personal element of the individual's choice. It was this emphasis on the personal choice and personal values of the nowincompetent person that led essentially eight of the nine justices to speak out in favor of what are known as advance directives. Advance directives are either Living Wills or Durable Powers of Attorney for Health Care-both of them healthcare proxy arrangements. The key point in stressing advance directives was that physicians should discuss with competent patients in advance what their wishes might be regarding lifesustaining treatment should they become incompetent.

Justice O'Connor was particularly eloquent in stressing the value of proxy decisionmakers to protect the patient's personal choice when the patient could not protect himself or herself.

You see why I think the Cruzan decision was a major event in emphasizing patient selfdetermination, both for competent and incompetent patients.

The other important 1990 event in this area was the Danforth Bill, a curious bill that sneaked through the House and Senate in November of 1990 as part of the Omnibus Budget Reconciliation Act (page 1850 or thereabouts). It was not discovered by anybody, not even the American Medical Association or the American Hospital Association, for a week or two after it was passed. The Danforth Bill provides that upon being admitted to a hospital or nursing home, patients must receive written information about their state laws and their rights under those laws with respect to endoflife medical treatment. The Act also requires institutions, both hospitals and nursing homes, to record at the time of admission whether a patient has an advance directive-either a Living Will or a healthcare proxy-that would take effect if the patient lost decisionmaking capacity. Finally, the Act requires that when patients are admitted into an institution they must be informed of the institution's policies. If these policies conflict with patient wishes and values, the patient can choose to go elsewhere.

All hospitals and nursing homes are expected to be in compliance with the Danforth Act by December 1, 1991.

Now some of the reasons for the Danforth Bill are clear. It provides a mechanism to encourage the use of advance directives as urged by the Supreme Court in the Cruzan decision. Public opinion polls have repeatedly demonstrated that patients want an opportunity to make their wishes known in advance while they're still competent to do so.

Both the Danforth Bill and the Cruzan opinion strongly emphasize the value of knowing what a patient's individual beliefs and preferences are. Otherwise, why do we bother to get advance directives from patients? Why would we encourage advance directives if it were not to try to learn in advance what patients would wish when no longer able to speak to their own interests?

The Wanglie case may be but a modest indicator of a changing attitude in society. Now decisionmaking authority, so reluctantly given up by doctors after those 2,500 years of medical paternalism and so eagerly embraced by patients in that second age-the age of the patient-may now be passing from both doctors and patients to third parties.

There are four ways in which I think patients' right of self-determination is being limited with respect to endoflife decisions for the incompetent.

First, there's a question of whether autonomy is a oneway or twoway street. It would be a hollow victory for patient self-determination if their only right to selfdetermination was to say, Stop the treatment and let me die; and people were denied positive rights, as the Wanglie family apparently is, to encourage that treatment be maintained. There is a sense that the rights that patients so eagerly sought may be limited to the right to decline and say No without any commensurate right to say Yes for continuation of support.

A second way in which selfdetermination is being compromised is by employing the socalled futility standard. Doctors in the Wanglie case said that further treatment for Mrs. Wanglie would be futile. This seems to be another approach to reassert control over patient choices. Some group decides that if there's only a 10 or 5 or 3 percent chance of "success" that efforts shall be deemed futile. When they're deemed futile no further clinical, ethical, or legal obligations would apply to the provider of services.

Who decides what percentage is regarded as futile is an important question. More importantly, who defines what goals are being pursued that have been decided on as futile? In the Wanglie case, trying to preserve Mrs. Wanglie's prior wishes, it was the preservation of her continued existence that the family regarded as a religious conviction on her part that they wish to defend. From the doctor's point of view, the goal being pursued was the restoration of Mrs. Wanglie's consciousness, which everybody agreed was not possible given the injuries she sustained last May. But by determining which of those goals was the one against which the futility standard would be applied was a very powerful opportunity to override patient wishes. Here we're discussing extreme cases of persistent vegetative state, but one could imagine a futility standard being applied in early or moderate Alzheimer's disease, severe mental retardation, or in other congenital or acquired problems.

A third way, slightly different from futility, is what I call the qualityoflife standard. Here a third party might say, not that treatment is futile but that the quality of the patient's life is such that treatment is not worthwhile. I'm not referring to an individual's own choice to refuse further kidney dialysis or cancer chemotherapy or some other treatment. That would be a straightforward statement of personal preferences. I'm referring to a thirdparty assessment that the quality of somebody else's life is such that it's not worth intervening, even though the intervention would achieve the specified goal (the continuation of life, for example).

Finally, a fourth effort to overcome selfdetermination is application of a kind of social utility, social Darwinism, sometimes couched in terms of rationing or allocation of scarce resources. This begins with the elderly and incompetent, but could rapidly extend to other groups. Former Governor Richard Lamm of Colorado has stated that "the elderly have a duty to die and get out of the way so the America's industrial engine can be refueled." He swears he didn't say that, but three newspapers and two or three television cameras caught him saying it. Not only that, but he said it to a Denver church to a group of Gray Panthers, so they were listening carefully. But the Lamm notion has been said somewhat more carefully by Dan Callahan, Director of the Hastings Center, in his 1987 book entitled Setting Limits: Medical Goals In An Aging Society. Callahan depicts the elderly as "a new social threat" and "a demographic, economic, and medical avalanchethat could do great harm. Callahan suggests using age as a specific criterion for the allocation and limitation of health care by denying lifeextending health care as a matter of public policy to persons in their late seventies and eighties or who have "lived out a natural life span.'' Callahan wrote in a NeW York Times Op Ed article that "Nothing less than a full rethinking of the relationship between medicine and old age will resolve the problem of spiraling health costs."

My conclusion, then, is that the secularization of bioethics has permitted incursions of socalled valuefree objective standards, legalisms and now, new economic and social utility standards. Instead of religious traditions that emphasize personal values and beliefs, we have other traditions affecting our bioethical interpretations. What we are witnessing with regard to endoflife decisions for incompetents is a shift from personal values to social bestinterest standards. We are likely to see these standards applied next to endoflife decisions for competent adults, and soon to all patients regardless of the severity of their illness or the strength of their preferences or beliefs. Some of that has already happened in managed-care situations. That may be part of the goal of socalled health outcome studies to decrease reliance on subjective preferences and to substitute a social best interest test, eventually obviating the need even to hear about patient or physician values or preferences. Patients will always be encouraged to say No, but who will listen to them when they say Yes? Who will hear them when physicians' discretion also will be limited by thirdparty payers, by insurance companies and government regulators?

I think we need a new model of the doctorpatient relationship-one that is able to withstand the officiousness, bureaucracy efficiency and control that is coming rapidly to American medicine. There are few defenders of the old model. Not even the bioethicists, who themselves usually come from the secular traditions of philosophy, law or economics, will protect us from this brave new world.

In conclusion, we must do what we can to keep issues of cost control separate from socalled deathwithdignity decisions and endoflife care. When the Reagan administration tried to have people sign Living Wills at the same time they signed up for their Medicare benefits, the AMA Board of Trustees was outraged. "Living Wills," they said, "should be used for alleviating suffering and should not be linked to costcontainment objectives."

My concerns are reinforced by the coming together of streams of medical and ethical opinion along with torrents of government concerns about the cost of medical care. I think cost-containment strategies already impose significant financial penalties upon pro-viders who try to offer prolonged care for impaired patients, in-cluding the elderly. It may prove convenient and all too easy to move from recognizing an individual's right to die to a climate enforcing what Lamm referred to as a duty to die. I suggest that efforts in this field be rechanneled from demonstrating that some patients' quality of life is too poor, too meaningless to justify the burden of continued life, toward the challenge of finding better ways to improve the comfort and care and quality of life for such patients.

The movement for death with dignity arose in response to concerns of the public that medicine wasn't paying adequate at-tention to compassionate caring for patients, particularly dying patients. It would be terribly ironic if this latest secular manifesta-tion served to undercut the image of physician as caring and nur-turing servant, and to undermine deep human values of caring and compassion. The issue is complicated. The tradition of medicine is a long one; therefore a slow and cautious approach would seem advisable, one that seeks to restore the original religious foundations of the American bioethics movement and to overcome its secularization.

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