The Fiction of Bioethics

Tod Chambers

• Publisher: Routledge
• Year: 2015
• eBook ISBN: 9781317795346
• Topic: Medicine
• Subtopic: Ethics in Medicine

Tod Chambers suggests that literary theory is a crucial component in the complete understanding of bioethics. The Fiction of Bioethics explores the medical case study and distills the idea that bioethicists study real-life cases, while philosophers contemplate fictional accounts.

Chapter One:

Stories as Data

“There is no longer any such thing as fiction or nonfiction; there’s only narrative.”

—E. L. Doctorow

THE LEGACY OF THE HANDMAIDEN

One of the recent developments in the field of bioethics has been an engagement with narrative. While there is considerable diversity in what is usually referred to as “narrative ethics” (see Jones “Literature”; Hilde Lindemann Nelson), much of the discussion has conceived of narrative as a handmaiden to philosophy. Both bioethicists and literary scholars have come to appreciate that the subject and analytical tools of the discipline of literature-and-medicine assist in resolving moral problems within health care.

Early on medical ethicists and literature-and-medicine scholars discovered that literature could provide a source for richly rendered ethics cases. Traditional ethics cases have often been criticized for being too thinly rendered to provide an adequate resource for analysis and thus drawing upon literature has been advocated by such scholars as Howard Brody, Joanne Trautmann Banks, Kathryn Montgomery Hunter, and Anne Hudson Jones. As James Terry and Peter Williams summarize this perspective: “Short stories and poems that are evocative, complex, and imaginatively challenging have been used to supplement or supplant the traditional case study as instruments for raising ethical issues…. Philosophic understanding of a given moral problem can be enriched by a literary account that places issues in a context of the lives and activities of particular characters” (1). It has become common for medical students to use the short stories of William Carlos Williams and Richard Selzer to explore issues of informed consent, refusal of treatment, and active euthanasia. And Jones, in her study of Perri Klass’s Other Women’s Children, has demonstrated how entire novels can provide a depth of understanding for moral issues in medicine that is missing from most discussions. Related to this use of literature as rich case study has been the work of physicians such as Robert Coles, who in The Call of Stories sees that literature can assist in the development of moral imagination (cf. Radwany and Adelson). Edmund Pellegrino in a similar manner observes that reflecting on literature permits a physician to further develop moral character (“Look”).

Beyond the actual subject matter of study, literature-and-medicine scholars have also seen that the critical methods of narrative studies can assist the analysis of moral problems. In “Literature and Medicine: Contributions to Clinical Practice,” the authors, leaders in the field of literature-and-medicine, acknowledge that literary works provide an “unequaled” source for ethics cases, but they contend that, “Perhaps more fundamental to ethics than individual literary texts are literature’s methods” (Charon et al. 602). Literature-and-medicine scholars have drawn upon the techniques developed in interpreting literary texts in order to facilitate understanding moral problems in medicine. Rita Charon argues that there are stages in the interpretation of ethics cases that are parallel to those used in understanding any narrative: recognition, formulation, interpretation, and validation. Brody suggests that the concept of the “life-span narrative” can assist in understanding moral problems through story (Stories 143–170). Hunter submits that narrative furnishes bioethics “a concern with time and change and causality” (“Overview”). Anne Hunsaker Hawkins argues that ethics cases—like other forms of literature—include moments of “epiphanic knowing.” Throughout all of these literature-and-medicine functions primarily as a mere aid to bioethics, a handmaiden to the work of the philosopher. And, aside from a general criticism of the “top-down,” mechanical nature of principlism, the relationship between the two disciplines has been generally friendly with the literature-and-medicine scholars assuring the ethicists that they do not wish to abandon normative judgments, ignore the moral principles, or fall into moral relativism. I contend, however, that literary theory should not simply assist ethics but should critique some of its central philosophic features.

CASES AS DATA

A concern with the nature of narrative should be of pivotal concern to bioethics because the ethics case is central to the discipline. The ethics case story had become, even before the revival of casuistry and the appearance of narrative ethics, the key genre of bioethics. In the present state of the art, bioethics, like medical discourse itself (see Hunter, Doctors’), is entrenched in stories. Ethical case narratives with commentaries are regularly published in national journals, such as the Hastings Center Report and the Journal of Clinical Ethics, as well as in many small biomedical ethics newsletters. And, like members of other communities, medical ethicists speak to each other through shorthand references to a shared narrative folklore; ethicists do not have to retell an entire story but can simply say “Dax,” “Helga Wanglie,” or “Debbie” (Brody, Stories 144). One cannot sit through an extended discussion with medical ethicists without hearing cases presented to test some abstract argument. It is this movement from case to theory and then back again that gives bioethics its distinctive character. Robert Veatch summarizes this view: “General ethical rules are widely viewed [in medical ethics] as nothing more than rules of thumb, guidelines in clinical decision making that should direct its focus to each particular case. That the case is crucial to medical ethics is beyond dispute” (12).

Stephen Toulmin, in his often cited article “How Medicine Saved the Life of Ethics.” explicitly associates the rise of bioethics with the “importance of cases.” Toulmin contends that the moral issues in medicine beginning in the 1960s forced moral philosophers “to go beyond the discussion of general principles and rules to a more scrupulous analysis of the particular kinds of ‘cases’ in which they find their application” (737). This view is also presented in K. Danner Clouser’s “Bioethics and Philosophy,” which appeared in a special supplement to the Hastings Center Report on the history of bioethics. Clouser’s article is a reflection on the relationship of philosophy to ethical questions that arise in medicine, but in his discussion of his work within the field for twenty-five years, Clouser brings up the issue of cases. Like Toulmin, Clouser contends that the “heart of the contribution” that bioethics has made to moral philosophy has been the “hard reality of its cases” (S11).

A good example of the case as data can be found in an essay by James Childress introducing the “normative principles of medical ethics.” Childress, at the outset of the essay, presents a case that “focuses on some major issues of moral justification and ethical reflection” (29–30). The case concerns a father who asks a physician to tell his family that he cannot donate one of his kidneys to his ill daughter for medical reasons although he in fact is histocompatible. After demonstrating how moral principles and rules can be used to resolve this dilemma for the physician, Childress offers some alternative theories that are critical of principlism. Childress explains, for example, that virtue ethicists have argued against principles and rules because they “emphasize (1) that a virtuous professional can discern the right course of action in the situation without reliance on principles and rules, and/or (2) that a virtuous person will desire to do what is right and avoid what is wrong” (29–30). Childress counters this argument by analyzing it in relation to his case: “When agents, such as the physician in Case 1, have to justify their conduct, it is not sufficient for them to appeal to their discernment or prudence or conscience without reference to principles and rules. There is simply no assurance that good people will discern what is right” (45). Childress then turns to the ideas of care ethicists, who argue that rules and principles are expressions of a male way of analyzing moral problems. Women “see and resolve moral problems differently,” for they draw upon “narrative, context, and relationships rather than on tiers of moral principles and rules with a logic of hierarchical justification” as men do (45). Once again Childress finds an alternative to principlism wanting, for he asks “Would female and male physicians have viewed the problem differently in Case 1? Would they come to different conclusions? It is hard to predict with confidence that they would have … because the major question is the moral significance of the nephrologist’s relationships with the father and the other members of the family” (45–46). Childress criticizes these methods for not providing as satisfying a way to resolve his case. Indirectly he demonstrates how vital cases are to the way bioethicists think through moral issues. Regardless of whether the moral theory is based on deductive models such as principlism or inductive models such as casuistry, the case remains the data upon which one “tests” the theory. A theoretical approach that does not provide a way to resolve cases is deemed not only irrelevant but deceptive.

WHY THERE ARE NO ARTLESS CASES

In his article, Clouser argues that what truly differentiates the ethicist from the moral philosopher is not so much the use of the case as it is the use of “real” cases. “Trying out one’s theory on real situations, thick with details, is very different from the philosopher’s typical hypothetical case, which, if not simply invented, is so highly abstracted from real circumstances that only enough details remain to defend selectively the particular point the philosopher wants to make thereby” (S11). The difference, Clouser contends, has more to do with whether the case is presented to “illustrate” the theory (as it is for the philosopher) or is presented to “test” the theory (as it is for the ethicist).

This distinction between the philosopher’s hypothetical case and the ethicist’s real case has been continually reaffirmed by scholars who analyze how cases should be used in the bioethics discipline. Dena Davis, for instance, acknowledges that fiction can provide a useful source for studying ethical problems, but she maintains that the “daily bread of bioethics” is the “real” case. Furthermore she insists that these real cases keep the bioethicist honest, for “by describing real experiences ethicists can make points and draw conclusions while inviting their readers to make their own independent judgments” (13). Terry and Williams state bluntly that bioethics, unlike literary studies, “is about real people with characters, in contexts, during real time. Case studies miss this; hypotheticals destroy it” (19). Similarly John Arras, in his discussion of the pedagogical value of casuistry, counsels against using fabricated cases

because hypothetical cases, so beloved of academic philosophers, tend to be theory-driven; that is, they are usually designed to advance some explicitly theoretical point. Real cases, on the other hand, are more likely to display the sort of moral complexity and untidiness that demand the (non-deductive) weighing and balancing of competing moral considerations and the casuistical virtues of discernment and practical judgment (phronesis). (37)

William Donnelly also cautions against using the hypothetical case, for “Such histories are usually constructed to illustrate the application of theory to concrete situation. The plot and characters are begotten of theory, not of life, and exist to demonstrate and confirm theory” (10). For these ethicists, hypothetical cases are biased, theory-driven, and constructed. Real cases are by implication impartial, theory-free, and guileless. The danger of “made up” cases, they suggest, resides in the teller’s intentions to illustrate a prior theory; real cases, because of their origin in actual events, can question rather than support a philosopher’s moral analysis.

This concern is continually reinforced by ethicists’ tendencies to reassure readers that the cases presented are “real” or “actual.” Tom Beauchamp and Laurence McCullough, in the preface to Medical Ethics: The Moral Responsibilities of Physicians, state that each of the cases they discuss “is based on actual events” (xv). In Cases in Bioethics, Carol Levine and Veatch note in their introduction that all the cases presented “are based on real events” (x). And in the acknowledgments to Mortal Choices, Ruth Macklin mentions that “all material is taken from actual cases” (ix).

Gérard Genette refers to assertions like this as forms of paratexts, which function “to ensure that the text is read properly” (Paratext 197). Furthermore Genette notes that these paratexts entail a “contract of truthfulness,” which can be contrasted to a “contract of fiction” in which the author asserts that events or characters have no basis in reality. These contracts of truthfulness for a made-for-television movie, for instance, are supposed to increase the interest on the part of the viewer, a voyeuristic excitement that does not exist for a text that does not have to make this claim of truthfulness.

Contracts of truthfulness in bioethics texts exist, I suspect, to inform readers that the cases presented will test the validity of their theoretical analysis. But these assurances raise questions themselves concerning whether the reader would be able to determine the difference between the fictional case and the real case. Without these paratexts how does the reader know that the ethicist is truly testing the moral theory? Clouser seems to believe that the difference in the telling of “real” situation lies in its being “thick with details,” the “relentlessness of the details” of the real case is what separates the moral philosopher’s work from the ethicist’s. Roland Barthes has noted that for readers the accumulation of details signifies a text as “realistic” (“Reality”); in other words, what Clouser sees as the mark of the real case is itself simply a representational effect that tells a reader that a text is not pure fiction. Without these markers—Genette’s paratext and Barthes’s reality effect—the reader of an ethics case would not be able to determine whether a particular text is fictional or not.

But regardless of the real status of a case’s reality, the reason that ethicists proclaim the superiority of the real case in bioethics has to do with the belief that unlike the hypothetical case, the real one is not constructed to provide a particular moral viewpoint. Bioethics is thought unique not because its cases can be shown to be objectively real but because as a matter of faith the real case will test rather than illustrate a moral theory. If there is any strongly held article of faith within the discipline, it is that bioethicists deal with the Aristotelian messy “real world” and that academic philosophers spend their time in a Platonic domain of unclouded abstraction. Bioethicists confront actual cases; academic philosophers contemplate imagined ones. A return to Childress’s analysis above illustrates how this binary split between the ethicist and the moral philosopher is in actuality a false dichotomy.

Childress’s criticism of virtue and care ethics is based on a naive—and common—misunderstanding of exactly what he is testing these two alternative ethics approaches against. His criticism suggests that he believes he is testing the approaches against stable facts, but this stance does not acknowledge that these cases are not themselves “the moral world” but rather representations of that world. Childress is not alone in this misunderstanding. A famous painting by René Magritte titled “La Condition Humaine” embodies this problem quite well. In the painting, we see a window open to a landscape but directly in front of the window is a painting which depicts the landscape so accurately that if the wooden legs of the easel and the side of the canvas were not visible, we would not be able to tell the difference between the two. We are so drawn into the painting that it is easy to forget that we are actually looking at a painting of a painting. Magritte’s work demonstrates how we can easily confuse our representations for reality, as well as the impossibility of getting behind how we represent the world to see the world as it “truly” is. Similarly, ethicists have been testing and fine-tuning their theories on “realistic” representations of moral problems but do not acknowledge that there is a difference between the painting and the landscape (even one constructed to appear “realistic”). This difference lies in how any form of representation (visual or verbal) uses conventions to signify the world. As W. J. T. Mitchell observes, “Every representation exacts some cost, in the form of lost immediacy, presence, or truth, in the form of a gap between intention and realization, original and copy” (21). What ethicists have generally ignored is that cases—the data by which they test the relevance of moral theory—are fictions. That is, they are made up, constructed and thus follow conventions of representation that inevitably bias how one understands this information. Literary theory, therefore, is not simply a helpful assistant to bioethics but actually provides vital information and criticism concerning the fictional properties of the discipline’s data.

A return to Childress’s criticism of care and virtue ethics reveals how vital narrative theory can be for bioethics. Here is the case narrative in full that Childress uses in his analysis, a case presentation that is quite typical in bioethics for the representational conventions upon which it draws.

For the last three years a five-year-old girl has suffered from progressive renal failure as a result of glomerulonephritis. She was not doing well on chronic renal dialysis, and the staff proposed transplantation after determining that there was a “clear possibility” that a transplanted kidney would not undergo the same disease process. The parents accepted this proposal. It was clear from tissue typing that the patient would be difficult to match. Her two siblings, ages two and four, were too young to be organ donors, and her mother was not histocompatible, but her father was quite compatible. When the nephrologist met with the father and informed him of the test results, as well as the uncertain prognosis for his daughter even with a kidney transplant, the father decided not to donate one of his kidneys to his daughter. He gave several reasons for his decision: In addition to the uncertain prognosis for his daughter, there was a possibility of a cadaver kidney, his daughter had already undergone a great deal of suffering and he lacked the courage to make the donation. However, the father was afraid that if the family knew the truth, they would blame him for allowing his daughter to die and then the family itself would be wrecked. Therefore, he asked the physician to tell the members of the family that he was not histocompatible, when in fact he was. The physician did not feel comfortable about carrying out this request, but he finally agreed to tell the man’s wife that the father could not donate a kidney “for medical reasons.”

Childress has taken this case from an article on teaching ethics in the journal Pediatrics (Levine, Scott and Curran). If we put aside the issue raised by the content of the case and instead attend to the form of the presentation—that is, to its narrative qualities—we can see that part of the reason that Childress finds virtue and care ethics ineffectual in understanding this case has less to do with the theoretical limitations of these approaches than with the limitations of Childress’s narrative form. Let us look at one feature of the narrative discourse—point of view—in Childress’s case.

Narrative theorists argue that narratives can be categorized by the way consciousness is presented in a story. As Wallace Martin summarizes, “...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Acknowledgments
• Preface
• 1 Stories as Data
• 2 From the Ethicist’s Point of View
• 3 Distancing Oneself from the Case
• 4 The Chronotope of the Case
• 5 Opening and Closing the Case
• 6 Why Bioethics Lacks Character
• 7 Speaking for the Patient
• 8 Dax Redacted
• 9 The Medium Is the Moral Message
• 10 Sexing the Case
• Concluding Remarks: Taking Stories Seriously
• References
• Permissions
• Index