Bioethics vs. Human Dignity

Wesley J. Smith is a strong and passionate critic of the direction bioethics has taken, but his Culture of Death might be read as a continuation of that same concern for civil rights that has characterized bioethics since its beginnings more than thirty years ago. Smith contends, in particular, that the rights of those who are near death have been radically diminished by the theoretical maneuverings of bioethicists. He aims to persuade his readers that “the movement’s leaders generally reject what until now has been the core value of Western civilization: that all human beings possess equal moral worth.”

There is much to be learned from Smith’s critique of bioethics, and much with which to agree. But, in the end, we need more than an appeal to civil rights to address the ethical problems of contemporary American medicine.

Smith is a lawyer, and it is clear that he has read widely in the bioethics literature. At the outset he devotes two chapters largely to depicting the development and the present shape of bioethics in this country. These chapters, especially the lengthy discussion of the Nazi eugenics program (which began, after all, with the disabled, and which medicalized and thereby sanitized killing), are likely to upset many who work in the field. Smith does sometimes paint with too broad a brush here. He is wrong, I think, to characterize bioethicists generally as operating with a “utilitarian” ethic. (At least he is wrong if he means that in any technical sense.) Nevertheless, his depiction of trends is not mistaken, nor is it obviously wrong to claim, as he does, that there is a kind of “moral equivalence” between views articulated by philosophers such as Peter Singer or Jonathan Glover and the medicalized killing of the Nazi program. Those who object to such strong language need to be relieved of the naivete which supposes that they alone can claim to be defenders of civil rights.

The rest of Smith’s argument unfolds in chapters that focus, for the most part, on end-of-life questions:

* He demonstrates how “patient autonomy” came to lie at the heart of much work in bioethics and how such claims to autonomy have been used to justify abandoning patients in their dying or “aiding” them by means of euthanasia or assisted suicide.

* He is deeply critical of the almost routine withdrawal of feeding tubes from severely disabled patients and of what he calls “the bioethics-driven medical policy called Futile Care Theory, which authorizes doctors to terminate wanted life-extending medical treatment over the objections of family and patients when the doctors believe that their patient’s life is not worth living.”

* He sees in some approaches to rationing health care, and even more clearly in claims that the elderly may have a “duty to die” rather than use up valuable resources on their medical care, still further pressures on the weak and vulnerable to get out of the way of those who are productive and capable.

* In a useful chapter on organ “donation,” he depicts some of the tendencies within bioethical thinking that — in order more readily to procure organs for transplant — justify calling patients dead when they have lost the capacity for conscious thought but while they retain brainstem activity that controls respiration.

* He notes that certain approaches to “animal rights” claim that at least some of the higher animals may deserve more protection than cognitively disabled human beings.

* And he concludes with a call for a “human rights bioethics” that will reject assisted suicide and euthanasia, that will prohibit medical caregivers from “unilaterally terminating wanted end-of-life medical treatment when the refusal is based on quality-of-life values rather than objective medical criteria,” that will challenge (both legally and morally) the routine acceptance of withdrawing feeding tubes and allowing patients to die from dehydration, and that will reaffirm the tradition of Hippocratic medicine in which a physician’s loyalty is to the good of his patient rather than to cost-saving measures of an HMO or the larger society.

In some respects, Culture of Death is less an argument than an expose. Smith’s chief concern is to hold up to the light of public opinion what bioethicists say — so that others may judge whether the trends he depicts are not, in fact, dangerous. He does this effectively and powerfully, but there are places where he is not careful enough to be fair to those he criticizes. For example, he describes bioethicists as “a relatively small ‘insider’ clique of elite and powerful” people, a “cadre of experts.” This is not entirely mistaken: One has only to note the way the same names turn up regularly on government-appointed bioethics commissions. Nevertheless, there is also more academic discipline and diversity in the field than Smith is willing to allow.

So, too, he is insufficiently careful in his dicussion of what bioethicists call the “Georgetown Mantra”: the four basic principles (autonomy, non-maleficence, beneficence, and justice) popularized in the widely read Principles of Biomedical Ethics, by Tom Beauchamp and James Childress, both of whom were at Georgetown University when the book was published. In his discussion of the Nazis’ medical cleansing of “life unworthy of life,” Smith suggests that this Georgetown Mantra could, in fact, be used to justify such a program: One could characterize euthanasia as acceding to a patient’s desire (autonomy), as relieving the suffering and disabled (beneficence), and as conserving resources for other important social needs (justice).

Perhaps so. But the Georgetown Mantra includes a fourth principle, nonmaleficence. No doubt a sufficiently creative interpreter could find a way to make it too support a program of medicalized killing, but it would take some work.

One more example: Smith notes that, beginning in the 1980s, at a time when public support for “outright euthanasia” would have been limited, bioethicists found a way to finesse this issue — a way to get patients with poor quality of life to die without seeming to euthanize them. The means was removal of food and water delivered via feeding tubes — characterized simply as the stopping of useless medical treatment. Smith writes:

A consensus solution was required to this newly emerging “ethical problem.” Bioethicists found it in intentional dehydration. Thus, in 1983 Daniel Callahan wrote, “a denial of nutrition may in the long run become the only effective way to make certain patients actually die. Given the increasingly large pool of superannuated, chronically ill, physically marginalized elderly it could well become the nontreatment of choice.”

The unwary reader would presume that Callahan — as well known a bioethicist as exists — endorses intentional dehydration as a way of making certain that these “superannuated” and “marginalized” patients die. Such a reader might not know that these sentences come from an article in which Callahan, while granting that there could be certain circumstances in which a feeding tube might properly be removed, argues against any routinized policy of removal.

None of this means that Smith’s depiction of current trends in bioethics is not largely on target, nor that he is not on the side of the angels. But there are two important issues, somewhat obscured by his treatment, that anyone concerned about those trends needs to think through with care.

The first issue has to do with how and where we locate the problem. Smith depicts bioethicists as the villains — “the new high priests,” an “elite” that has “dominated” and “steered” our society’s conversation on these matters in a drastically wrong direction over the past several decades: “When I tell my lecture audiences that most doctors no longer take the Hippocratic Oath upon becoming physicians and that many no longer see it as relevant to their profession, they are shocked and disturbed. They believe, quite correctly, that the oath exists for their protection.” Why, they ask, would physicians have abandoned this tradition that commits them first of all to our — to patients’ — well-being?

But then, in the next breath, Smith writes: “The answer to this important question is complex, having much to do with who we are as a culture and a people.” He quotes Edmund Pellegrino’s claim that the protections and limits embedded in the Hippocratic Oath “first came into question in the mid 1960s as part of the general upheaval of moral values that occurred in the United States.”

So who is to blame: bioethicists or the culture? Are our current medical problems foisted on us by a small elite with values quite different from our own? Or do they derive from the whole culture, in which we are complicit? Is it only the cadre of bioethicists who believe that disabled life is not worth living? Or is it our entire society that so values productivity, intellect, and achievement that it must view those who lack such capacities as nonpersons?

How we answer such questions will be important for several reasons. The structure of Smith’s Culture of Death implicitly presupposes the relative moral health of our culture. Alert people to what is actually happening, the book suggests, and they will be appalled. Alert them to the way in which the rights of the weakest and most vulnerable members of our society are being denied, and they will object.

We can hope that Smith is right. If the problem lies largely with bioethicists, we would be better off without national commissions of bioethics experts — better off leaving such questions to state and federal legislatures, which will be sensitive to the values of the people.

If, however, the rot goes deeper, then we need something more than the kind of civil rights agitation that Smith demands. We need better thought and argument, better images supplied by novelists and poets, better educators intent on inculcating a more truthful vision of what it means to be human.

The second issue in need of more careful sorting out involves the relation between patient autonomy and the medical judgment that a particular treatment is futile for a particular patient. When bioethics began, it was energized in large part by a desire to empower decision-making by patients in the face of well-established medical paternalism — which is why bioethicists tended to make “patient autonomy” the leitmotif of their developing discipline. This reached its highwater mark in the early 1980s with, for example, the influential reports of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.

For the first decades, the working assumption was that patients would use their newly acquired autonomy to refuse useless, burdensome, and unwanted treatments. (One can see this assumption at work in the development of advance directives such as living wills, the whole point of which was thought to be the specification of circumstances in which one would not want treatment.)

Gradually, however, cases began to arise in which patients (or those authorized to decide for them) wanted continued treatment physicians thought useless or futile. This was a new twist to patient autonomy — now suddenly used not to reject perceived overtreatment but to protest perceived undertreatment. When we say treatment is “futile,” we might mean that it can no longer benefit the life the patient has, or we might mean that it is not beneficial to have such a life — and which we mean makes all the difference in the world. If we withhold treatment because that treatment is medically futile, our act aims at caring for the patient as best we can. If we withhold treatment because we think such a life is useless to have, our act aims at dispensing with a life.

Hence, the stakes are very high, and Smith is right to focus our attention on the issue of futility in care. In so doing, however, he can push the argument too far. He sometimes seems to think that all patient requests must be honored — as if patient autonomy really deserved an entirely free rein. He knows better, of course, for he can also write that “consent is not the end-all of medicine. I could consent to have my nose cut off to spite my face, but no ethical doctor would perform the surgery.” And there may be occasions when a doctor must respond by saying that continued treatment is futile — so long as the doctor means by this that there is no way for medicine to benefit the life this patient has.

Smith recounts an occasion when, after he had written an article in THE WEEKLY STANDARD criticizing what he calls “futile care theory,” he received from Daniel Callahan

a courteous but critical letter in which he claimed that my article had done bioethics “a serious injustice” because futility was not about saving medical resources but was meant to be “utterly patient centered.” Callahan also wrote that while patients have the right to refuse unwanted treatment, they do not have the right to demand care from doctors who do not believe it should be rendered. “Doctors have to maintain their professional integrity,” Callahan wrote, “[if] they are not to be likened to plumbers.”

Smith rejects Callahan’s claim by taking much too quick a refuge in claims of patient autonomy: “Like other licensed professionals such as attorneys, physicians are duty-bound to devote their unswerving loyalty to the patient as they are not requested to act unethically or unlawfully.”

That is, however, precisely the point. An attorney may not destroy evidence — even if his client wants him to. An attorney may not put on the stand a client whom he knows intends to perjure himself — even if the client wants him to. He may not file countless motions devoid of significance — even if his client wants him to. Likewise, doctors are committed to attempts to cure and, when that is impossible, to care. They cannot agree to provide care that is not medically indicated without becoming simply the tool of patient desires. As the lawyer serves not only the desires of clients but also the good of justice, so physicians are to serve not only the wishes of patients but also the good of health.

None of this is intended to deny that Smith is working toward the good. Claims of futility are, I think, often misused today. They are sometimes claims about the futility of a life with suffering or disabilities, not claims that no treatment can benefit even a disadvantaged life. But it will not do simply to demand power for patients and their families.

In other words, a serious criticism of the current discipline of bioethics is necessary, but insufficient. If we are to defend what Smith calls “the core value of Western civilization — that all human beings possess equal moral worth” — we need an understanding of what it means to be human, which must be in part a recovery of the language of limits.

At least since Kant and Hegel, the great project of modernity has been a vision of human beings as free self-creators. And when that vision is joined to the ever-expanding technical possibilities of new reproductive technologies and increasing knowledge of the human genome, free self-creation actually begins to sound plausible. This is not something bioethicists alone have taught us; we all feel it in our bones. Gnostic to the core, we seek constantly to surmount the body’s limits.

We are not likely to overcome this vision by demanding patient autonomy — which involves, after all, the language of choice and free self-determination. If medicine seeks the good of health, then it cannot simply serve patients’ desires. It must serve their well-being in their bodies, which cannot simply be mastery of the body. We need a wisdom that can honor weakness, not just a power that conquers it.

This does not mean ceasing our attempts to cure illness or relieve suffering, but it does mean reminding ourselves why we do so. We need to do more than oppose a culture of death; we need also to depict a culture of life. Living human beings are not only reason and will, not only masterful beings.

They are also bodies — finite, loving, suffering bodies. Why should medicine care for those in need? Because we value the lives of the ill and the suffering — not only as they might be were they free of disability or illness, but as they in fact are.

This is what it means to give their lives worth: to say, as the philosopher Josef Pieper once put it, “it’s good that you exist,” even in your weakness and disability. We can hardly expect the ill to think or feel this about themselves if we have taught ourselves to believe that only the free self-creator is fully human.

From this angle we might wonder whether Smith has not left something important out of his Culture of Death. Except for partial-birth abortion, which he judges equivalent to infanticide, he deliberately and intentionally passes by the issue of abortion. “In these pages and in my public work,” he writes, “I am agnostic on whether abortion should be legal or illegal.”

It may be, however, that abortion is foundational in the culture of death that Smith opposes. It has embedded in our public morality the priority of the language of choice. It has taught us to believe that our dignity as moral beings lies not in accepting what may be unwanted and unexpected — not in accepting as sheer gifts our own lives and the lives of others — but in being free self-creators who shape our own directions. It is ironic that an age which seeks to recapture our relation to the earth and bids us tread lightly on this planet should simultaneously encourage us to think of ourselves not as bodies, not as animated earth, but simply as masterful wills.

But that vision of the human being as fundamentally a chooser, as will, as free self-creator, is actually narrow and sterile. It cannot comprehend the mystery of erotic love or of the bond between parent and child. It can make no sense of death as a limit up against which we live. It is baffled by a compassion that, rather than holding suffering or sufferers at arm’s length, accepts and shares that suffering. And most of all, perhaps, it cannot comprehend the mystery of a creature drawn by longing to bend the knee to the God whose very being constitutes our limit.

As David Rothman suggested in Strangers at the Bedside, part of the effort to overcome medical paternalism involved shoving doctors a little farther from the bedside, thereby making room for bioethicists to squeeze in as defenders of patient autonomy. Wesley Smith is quite right to see that some bioethicists can no longer be described as defenders of the rights of patients generally, since they see little point to the lives of some of the weakest members of the human community.

Simply to reassert patient autonomy in the face of that problem is, however, a partial and inadequate response. As Rothman noted more than a decade ago, to put autonomy at the center of the doctor-patient interaction means chiefly that “one more aspect of modern life has become contractual, prescribed, and uniform.” It may be the best we can manage for now, and Smith charts some helpful directions in his final chapter, but a healthy bioethics will require a fuller and richer vision of what is human than the language of choice can provide.

Gilbert Meilaender holds the Richard and Phyllis Duesenberg Chair in Christian Ethics at Valparaiso University.