Through the Looking Glass
New Voices Ask To Be Heard in Bioethics DONALD F. PHILLIPS
The shape, function, and dynamic of the field of bioethics is in constantflux,and nowhere is this more apparent than at gatherings of those immersed in the discipline. This section presents coverage and commentary on conferences and settings where voices outside the mainstream of biomedical ethics can be heard. Because it is still evolving, the relatively new field of bioethics is in a state of flux— its shape and function constantly changing as new voices from within the field and without challenge the very basis of what it is and does. Using outdated (but well-understood) reductionist Newtonian mechanics, the field of biomedical ethics can be seen as a machine made up of parts molded and produced in the factories of medicine, philosophy, theology, law, and, to a lesser extent, some of the biological and social sciences. Assuming that form dictates function, what the ethics machine does and how well it performs depends on how well the components fit and work together. Leaving aside the questions of who is in the driver's seat and what the ethics machine should be doing, a cursory review of the bioethics literature over the past decade shows that when it "does ethics/7 it usually approaches or frames ethical problems in terms of the Western philosophical principles of autonomy, beneficence, nonmaleficence, and distributive justice —most likely because of the willingness by the component members to employ the methods of analytic philosophy. There are some signs, however, that the current ethics machine is faltering—that the old chassis is ill equipped to handle new tasks or that the old buggy may have been steered onto the wrong road. Three types of discontent with the current model of bioethics have emerged: 1) problems arising from the priority given to autonomy and individualism in ethical reasoning, 2) criticism that such reasoning usually applies only to the narrow concerns of white middle-class and upper middle-class North Americans, and 3) the current disenchantment with the formalistic approach to ethical analysis.1 To remedy the situation, a number of suggestions have been offered, all of which can be grouped into three options: modify the machine from within, improve the operation by adding new components, or build a new model. The options were implicitly present in themes that emerged during discussions at various meetings and conferences sponsored by different organizations held in October and November. The following is a summary of these themes. Modify the Structure from Within Some of the dissatisfaction with bioethics is seen simply as a matter of wrong connections between parts and the reliance on overworked components —all of which can be fixed by rewiring the system and shifting or rearranging some of the operational functions. Cambridge Quarterly of Healthcare Ethics (1992), 2, 169-177. Printed in the USA.
Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00
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The Congress of Ethics Committees of Clinical Societies met 18-19 March 1991 at the New York Academy of Medicine to discuss the merits of fostering an interspecialty exchange on ethical issues facing clinical medicine. Representatives of 25 clinical societies generally agreed on the need for a more structured collaboration within and among the clinical specialties, a sharing of expertise and resources necessary to tackle "transdisciplinary" issues that lay outside the concerns of any single society. There was a suggestion that specialty ethics committees, working with the Congress, could also develop and disseminate a descriptive clinical ethic for each of their fields. The delegates believed that such materials would soon become a valued reference for medical educators, hospital ethics committees, physicians, legislators, and the courts. The Congress is seen as suited to serve as a clearinghouse for educational materials produced by its constituent societies. "AAB" The " American Association of Bioethics" is the working title of a proposed umbrella organization that might possibly be created by connecting the current players in the bioethics field. On 11 November, representatives from 31 bioethics organizations, academic centers, and healthcare organizations, met at the New York Academy of Medicine to discuss the need for and practicality of some type of group of bioethicists designed to permit mutual communication and cross-fertilization, enhance scholarship, attend to professional education and development, and facilitate American involvement in international forums and organizations, such as the International Association of Bioethics. Nearly all attending the meeting agreed that coordination and communication in bioethics need improvement, but opinion was divided on what form such an umbrella organization would take and what functions it would perform. The meeting concluded by deciding on a process for selecting a planning committee that will submit a proposal to the representatives of the organizations, institutions, and societies who attended. Add New Components Some critics of bioethics see the machine as lacing certain parts and interconnections. By adding new components, the efficiency and operation of the bioethics enterprise could be improved. In considering these claims, efforts must be made to sort out which of these potentially new components would contribute improvements and which would just be along for the ride. ARENA Applied Research Ethics National Association (ARENA) is a national service organization of about 500 members who are primarily research administrators and others who sit on institutional review boards (IRBs) and/or institutional animal care and use committees. Its headquarters are in Boston, where it shares office space with PRIM&R (Public Responsibility in Medicine and Research), a nonmem-
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bership organization that sponsors an annual meeting of individuals, who serve on institutional review boards. Last fall, PRIM&R held its first annual conference on ethics committees and ethical decision making in healthcare, in a crowded 2 days, a nationally renowned faculty delivered a nuts-and-bolts program on the mission, structure, function, and pitfalls of healthcare ethics committees to about 200 attendees, many of whom were just starting to wade into the waters of ethics committees. Sandwiched into the primary meeting was a special session in which ARENA president Bobbette Godding introduced her organization to some 20 conference attendees present. She and Jan Vinicky, an associate in the Bioethics Program at NIH, suggested that more cooperative efforts might be undertaken between ARENA and institutional ethics committees (IECs) by forming and operating regional networks of healthcare ethics committees. The idea met with some confusion and resistance, primarily because insufficient time was given to discussing what mutual interests there might be between IRBs and IECs. Nonetheless, potential links between IRBs and IECs will be discussed, and the subject will be placed on the agenda for the next PRIM&R conference on ethics committees, scheduled for Spring 1993. NSPRCA The National Society for Patient Representation and Consumer Affairs is a 500member organization and an affiliated society of the American Hospital Association. Patient representatives act as agents for the hospitalized patient, explaining and interpreting information, clarifying hospital procedures and routines, and resolving conflicts that may arise between the patient and hospital personnel. There are strong parallels between patient representatives and members of ethics committees. First, both represent diverse backgrounds in education, training, and experience. Second, they both see the patient as their primary focus of attention and see their roles as patient advocates. Third, they both work at the interfaces of hospital care —communicating, coordinating, and interpreting information and resolving problems that may arise among patient, family, and hospital personnel. Fourth, they are both often chosen for their roles because of their interpersonal and negotiating skills, and their willingness to reach for goals that are beyond those stated in job descriptions and minimalist standards of care. The patient representative's involvement in areas related to bioethics is increasing. Since its formation in 1972, the NSPRCA and its members have played an important role in facilitating the organ donation process within hospitals and in working with regional donor recruitment centers. In recent years, NSPRCA annual meetings have boosted the number of sessions devoted to ethical issues. The October 1991 meeting in Denver featured sessions on the ethics of rationing and prioritizing services, the Patient Self-Determination Act (PSD A), institutional culture, and culturally sensitive approaches to patient care. The society has been instrumental in familiarizing hospitals with the PSD A, and many members have direct responsibility for overseeing the implementation of the law in their facilities. Each year, an increasing number of patient representatives are appointed to institutional ethics committees. In the future, the involvement of the patient representative in ethical matters within the hospital will increase.
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Donald F. Phillips Create a New Model Some critics of bioethics contend that the field has been dominated by the medical profession using the analytical tools of principle-based theoretical philosophy, with patient autonomy clearly accepted as the primary principle honored if and when conflicts of values arose. Calls for other voices to be heard and new models to be developed that steer the field away from such abstract reference points have been made at recent meetings with a diverse membership. APHA The American Public Health Association, established in 1872, is a 50,000-member confederation of 23 multidisciplinary sections from very specific interests (e.g., vision care, statistics, oral health) to very broad areas (e.g., environmental health, medical care, public health education). All the differences, contradictions, rivalries, and disagreements between organized medicine and public health play themselves out at APHA meetings. Ethical concerns are raised in many of the sessions, with rights (for minority or disenfranchised groups) and justice as recurrent themes, and there is a sense of the battle between the individual and society. An explicit focus on ethics within the APHA started about 5 years ago when the Forum on Bioethics proclaimed itself into existence. It is one of six APHA special primary interest groups (SPIGs), which are bodies of self-elected APHA members who share a common occupational discipline or area of interest. During its relatively short existence, the Forum has grown in size and number of programs offered at the APHA annual meeting. This year's November meeting in Atlanta was particularly strong with Forum sessions on reproductive rights issues, the ethics of AIDS research, the implications of predictive genetic screening, healthcare of migrant farm workers, research on public health ethics, futile treatment, ethical consideration in measuring and reducing health risks, and one session, of particular interest for this article, entitled "Beyond Traditionalism: Critical Thinking in Bioethics." Kudos for this strong programming should to Kate Brown, Center for Health Ethics and Policy, Creighton University, Omaha, who organized and arranged most of the Ethics Forum sessions. For the "Beyond Traditionalism" program, Brown assembled a diverse group of voices who laid claim to ethical territory. Robert S. Olick, J.D., executive director of the New Jersey Bioethics Commission, described that state's new law that provides a "religious exemption" from a declaration of death based on neurologic criteria. The exception is viewed as an example of how a law can respect personal religious beliefs, such as those of the Orthodox Jewish community, which does not accept brain death, believing that death should be declared only on the traditional standard of irreversible cardiorespiratory function. The presentation of Patricia Flynn, chair of Health Administration Programs at St. Mary's College, Moraga, California, regarding different perspectives on how ethical problems are framed was more to the point. She bemoaned the fact that the much-touted interdisciplinary nature of ethics committees rings hollow because most committee members, regardless of sex, age, status, occupation, or education, are all operating on the same biomedical model of discourse. She used the term "moral ordering" to refer to the defining, redefining, constructing, reconstructing, and deconstructing involved in negotiating and inter172
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preting competing discourses, each of which seeks legitimacy as the central model for decision making. In her study of more than 40 ethics committee cases, Flynn found that the thought processes and vocabulary of medicine were so endemic to hospital staff, that this single model becomes a screen that, ultimately, is mistaken for reality. What is not important from the biomedical view is not perceived as important; in fact, it is often not perceived at all. The very act of presenting a case before an ethics committee leads the physician into the biomedical format of "age, sex, diagnosis" in which the patient as a person is "profoundly absent from the story." Surprisingly, this same format is strictly adhered to by nurses, social workers, psychologists, lawyers, and even ethicists. The legitimacy of the medical model, Flynn explained, "comes through the structural condition of the medical discourse" — the naming of persons, conditions, and things, which gives the illusion that they are understood. "Language constructs reality; words create worlds," she said. But in the real world of bioethics, there are also discourses of philosophy and ethics, of politics, of sociology, of law, and of everyday life. Flynn cited one case in which a competing system of discourse, presented by a pediatric nurse consultant, successfully challenged the biomedical one, presented by a neurologist. Through the process, a new understanding was gained by the participants, and a different treatment plan, acceptable to all, was arrived at. The successful resolution of this issue points out the value of moral ordering through negotiation, Flynn concluded. "What becomes clear . . . is that committees need to find a way to connect the medical and non-medical models of discourse, so that all involved in the dialogue" can maintain an appropriate focus on the patient and family "and use ethics, medicine, law, and the narrative of the patient" in making ethical decisions. Public health practitioners, with their focus on rights and justice, often see the exclusion of different voices in decision making as being not so much a passive or unconscious omission, as in Flynn's case, but rather a more active denial by those in power to frame the issues in such a way as to make new voices irrelevant. Jan C. Heller, a fellow at the Emory University Center for Ethics in Public Policy and the Professions, Atlanta, used the term "moral boundaries" to define how problems are construed and what sanctions may be imposed to address these problems. Thus, he said, they permit certain questions to be examined and others to be unexamined. Heller argued that the ethics component of the U.S. Human Genome Project draws its moral boundaries so as to leave unexamined some critical questions about implicit background assumptions, contexts, and institutional arrangements that underlie the project. Particularly, it does not address the implications for our healthcare delivery system, should the project realize its far-reaching technological and medical goals. Instead, it concentrates on "interim" ethical, legal, and social problems related to the use of information generated by genome research. In a similar manner, Annette Dula, EDD, a former research associate at the University of Chicago, argued for an African American perspective on bioethics and pointed out that although the field of bioethics has provided critical and respected commentary regarding ethical implications of access to healthcare, the field has not "particularized" lack of access to specific minority groups whose access and status are unequal. 173
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Mark S. Kaplan, Ph.D., University of Illinois at Urbana, pointed out that although many public health policies have historically been founded on utilitarian principles, modern efforts at public hygiene afford those in power an opportunity to expand the social control of certain marginal groups and their "dangerous" behaviors. He suggested that certain HTV/AIDS policies that are meant to protect the public welfare can be used as a mechanism of surveillance and discipline. Another form of moral boundary is the concept and use of the "children's best interest standard." John D. Lantos, M.D., associate director of the University of Chicago Center for Biomedical Ethics, pointed out that in the last decade, certain reproductive choices, such as the use of surrogate mothers, frozen embryos, and children conceived to serve as bone marrow donors, have been criticized on the grounds that they violate the best interests of the children who are produced. Lantos believes the child's best interest standard is ill suited to these decisions for three reasons. 1) In these decisions, the alternative for the child conceived is not to have existed at all. Thus, in deciding whether the particular reproductive choice is in the child's interest, there is only nonexistence to compare the child's interest against. 2) There are no data on outcome for children conceived using new reproductive technologies, and there are no standard measures with which these reproductive choices can be compared. 3) Other reproductive choices are not judged by the best interest standard. Thus, Lantos said, arguments about decisions to conceive a child that invoke the best interests of children are inherently flawed. They frequently disguise other issues, such as concerns about the exploitation of women (a feminist issue) or about the demise of the traditional family (a conservative political issue). These concerns should be dealt with explicitly, Lantos said. AAA The American Anthropology Association held its annual meeting this past November in Chicago and the program was full of sessions, socials, and soirees related to bioethics, many of them under the aegus of the Society of Medical Anthropology, one of 22 societies or associations affiliated with the umbrella organization. Considerable attention as given this year to the topic of how anthropology could bring its "contextual sensitivity" to political, economic, social, and ideological factors that define and complicate bioethical issues. One session, for example, titled "Problematics of personhood at the margins of life," sidetracked normative discussions of personhood to entertain more contestable approaches. Panelists addressed birth, death, and other liminal stages of life across cultures and tried to explain how concepts of personhood are both reinforced and challenged by "problematic persons," such as fetuses, primates, the infirm and disabled, the ungendered, and the surgically altered. Other sessions addressed abortion from a cross-cultural perspective, the interplay of law, biology, and medicine, whereas other individual papers examined ethical considerations in HIV research and the treatment of AIDS patients. A presentation by Anne Burson-Tolpin, West Orange, New Jersey, was similar to that of Flynn's (APHA). Burson-Tolpin looked at how the stylized format of biomedical case presentation given in grand rounds and in other clinical settings and written into the patient's medical record enhances th physician's perspective and ability to view patients as objects. She also concluded that the joking interruptions in oral presentations undermine the transformation of person to pa174
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tient, although such Interruptions represent a culturally permitted way of "amplifying serious biomedical discourse" in dealing with matters that scientific medicine cannot understand. More to the point of this article was a session titled, "Bioethical issues: anthropological perspectives/' which was arranged and co-chaired by Patricia Marshall, Ph.D., Loyola University Stritch School of Medicine, Maywood, Illinois, and Betty W. Lewin, Brooklyn College, two medical anthropologists working in humanities programs within medical schools. Anthropologist Kate Brown, Creighton University, gave the keynote presentation co-authored with philosopher Andrew Jameton, University of Nebraska Medical Center, on the "is" and "ought" of bioethics. They raised three questions: 1. Are values (a) rooted in universal principles; or (b) in the variation of cultural experience? 2. Should/do the legitimacy and limits of an ethical claim, such as autonomy, (a) rest in philosophical claims, or (b) in power relations and rules of a particular social context? 3. Should/do bioethicists (a) focus on points of logic and concept when dealing with ethical problems, or should they (b) focus more on individual negligence and systemic inequities that lead to these problems? If your answer to each of these questions was (b), you are well on your way to understanding "contextual realism." Brown acknowledged some of the camps that are calling for ethical considerations that "reflect the heterogeneity of circumstances and interpretations that figure in ethical dilemmas facing patients, families, and healthcare providers." One such camp is feminist social theory and philosophy championed by Carol Gilligan, Susan Bordo, and others. To achieve a new intellectual maturity, or to get from "is" to "ought," Brown and Jameton think the current intellectual self-reflection in values studies could well prove to be a nurturant soup. We are intrigued with the uncharted possibilities for moral reasoning that lie in the tensions between philosophical ethics and culture, between autonomy and community, between abstract principles and the "real world," but we, and others, are having a devil of a time giving an account of the relationship between these various spheres. Social scientists describe how decisions are made and what relative meaning is given to values in various contexts of bioethics. However, using this "is" information to determine what "ought" to be done or what is right in healthcare decisions and policy is more difficult. Brown and Jameton believe it should be possible to mix a little philosophy, a little anthropology, a little psychology, etc., in order to follow a new line of ethical theory and practice that respects both the facts, as we are coming to know them in context, and also respects the ideal of reason, as we gradually change how we perceive it. They cite the work of Gilligan and Cassel for going beyond mere "description of actual moral judgments by offering ways to measure and balance the relative 175
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merit of different approaches, while avoiding the deadening reductionism to rules, rights, and principles." To go further, Brown and Jameton suggest the following needs: 1. "to expand our modes of moral reasoning to explore the significance of other morally laden responses and motivations, such as honor, courage, anger, shame, guilt, and even love as they are expressed in various contexts." 2. to improve "our ability to resolve disagreements in moral reasoning—however defined." 3. "to expand the ways in which we teach and talk about ethical issues so that we appeal to what Giiligan refers to as the logic of the psyche' as well as 'the formal logic of classification and control.'" Other panelists provided their own examples of how the complexities of bioethical dilemmas can be situated within wider contexts. Two presentations focused on the limitations of principle-based bioethics, particularly with regard to operational definitions of beneficence and autonomy. Jacquelyn Slomka, Ph.D., Office of Bioethics, The Cleveland Clinic Foundation, raised the concern that the current bioethical discourse embodies assumptions and presuppositions about beneficence that do not allow for social, cultural and political meanings that are part and parcel of healthcare. As such, the discourse of bioethics may have the unintended effect of reinforcing the diminishment of the social person that occurs in the healthcare setting. Slomka does not equate beneficence with medical paternalism but rather uses an updated, redefined meaning tied to the obligation of physicians to have personal moral integrity, to use their power responsibly, and to look for what is good and right in each decision. She argues that from a socioculturai perspective, the meaning of "doing good" (i.e., beneficence) in medicine, which assumes that the good is done to patients, does not take into account that patients are defined as persons using a philosophical definition that is often based on abstract criteria such as rationality, creativity, self-awareness, and autonomy. "The social interaction characteristic of all human activity is inconsequential in this notion of the person," Slomka explained. "Furthermore, this atomistic view can be seen as syncretistic with the medical tendency to view human beings as isolated reservoirs of disease, rather than as persons in a social context." "When medical beneficence meets only patients' physical/biological needs, but denies them personhood, certainly the goals of medicine are called into question," Slomka said. "But when ethical discourse fails to address social personhood and the social context of that discourse, then the moral goals of that discourse can also be called into question." One of several concrete examples she used was the caregiver committing time and energy to feed a helpless patient, as opposed to discharging such moral obligation in favor of inserting a feeding tube. When ethical discourse focuses solely on the individual physician/patient relationship while ignoring the social context and implications of ethical 176
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decisions, on what "ought to be" rather than "what is," then the discourse of bioethics holds the danger of reinforcing rather than changing the healthcare status quo and thereby failing in its moral function. Donna J. Keren, Ph.D., Temple University, drew on her first-hand experiences of decision making and ethical justification related to a near-fatal shooting in Mexico and the daily and extraordinary proxy decisions made for the incompetent elderly in Pittsburgh. She noted that although autonomy is a key concept in medical decision making, whether by proxy or by the individual (self), such decisions "are not based on the patient as an individual with a distinct 'best self-interest' but rather as a member of a family of kin group, within which the majority of decisions are made." Keren stressed the point that the set of social relations and obligations associated with kinship and community "comprise the essential precondition to the possession and exercise of autonomy." These presentations and others at the AAA meeting point out how different cultural contexts influence and offer different interpretations and ordering of values. As Brown noted in her comments, these differences inform ethical decisions in both lay and medical worlds. Some of these differences are striking in their contrast to values that we — in the U.S. — may take for granted. By articulating other value systems as a contrast to our own values, anthropologists serve to better clarify our own, otherwise hidden, ethical agenda in healthcare. Bioethics is but one of many areas of study and practice that are undergoing changes as a result of challenges from outside their fields. Evolution, mathematical analysis, experimental psychology, neuropsychology, and artificial intelligence, like bioethics, are having their foundations shaken. The common thread is that each discipline must reexamine how its approach to structuring knowledge is influenced by the context in which the knowledge is gained and how such knowledge affects (and often limits) our perception of how best to apply it. If new voices are to be taken seriously in bioethics, specialized anthropologists probably will be the best guides, through the complex realm of contextual realism, to design the new model of bioethics that will steer clear of the present-day trappings and obstacles. Marshall summed up the expectations of the field by noting,1 Anthropologists can contribute to the fields of medical ethics and bioethics in two significant ways: by calling attention to the cultural underpinnings that sustain and reinforce ethical constructs in matters of health and illness, and by extending the scope of the field through explorations of cross-cultural and intracultural variation in the production of and responses to medical/moral dilemmas."
Note 1. Marshall PA. Anthropology and bioethics. Medical Anthropology Quarterly, March 1992; 61(1):47-71.
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New Voices Ask To Be Heard in Bioethics DONALD F. PHILLIPS
The shape, function, and dynamic of the field of bioethics is in constantflux,and nowhere is this more apparent than at gatherings of those immersed in the discipline. This section presents coverage and commentary on conferences and settings where voices outside the mainstream of biomedical ethics can be heard. Because it is still evolving, the relatively new field of bioethics is in a state of flux— its shape and function constantly changing as new voices from within the field and without challenge the very basis of what it is and does. Using outdated (but well-understood) reductionist Newtonian mechanics, the field of biomedical ethics can be seen as a machine made up of parts molded and produced in the factories of medicine, philosophy, theology, law, and, to a lesser extent, some of the biological and social sciences. Assuming that form dictates function, what the ethics machine does and how well it performs depends on how well the components fit and work together. Leaving aside the questions of who is in the driver's seat and what the ethics machine should be doing, a cursory review of the bioethics literature over the past decade shows that when it "does ethics/7 it usually approaches or frames ethical problems in terms of the Western philosophical principles of autonomy, beneficence, nonmaleficence, and distributive justice —most likely because of the willingness by the component members to employ the methods of analytic philosophy. There are some signs, however, that the current ethics machine is faltering—that the old chassis is ill equipped to handle new tasks or that the old buggy may have been steered onto the wrong road. Three types of discontent with the current model of bioethics have emerged: 1) problems arising from the priority given to autonomy and individualism in ethical reasoning, 2) criticism that such reasoning usually applies only to the narrow concerns of white middle-class and upper middle-class North Americans, and 3) the current disenchantment with the formalistic approach to ethical analysis.1 To remedy the situation, a number of suggestions have been offered, all of which can be grouped into three options: modify the machine from within, improve the operation by adding new components, or build a new model. The options were implicitly present in themes that emerged during discussions at various meetings and conferences sponsored by different organizations held in October and November. The following is a summary of these themes. Modify the Structure from Within Some of the dissatisfaction with bioethics is seen simply as a matter of wrong connections between parts and the reliance on overworked components —all of which can be fixed by rewiring the system and shifting or rearranging some of the operational functions. Cambridge Quarterly of Healthcare Ethics (1992), 2, 169-177. Printed in the USA.
Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00
169
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The Congress of Ethics Committees of Clinical Societies met 18-19 March 1991 at the New York Academy of Medicine to discuss the merits of fostering an interspecialty exchange on ethical issues facing clinical medicine. Representatives of 25 clinical societies generally agreed on the need for a more structured collaboration within and among the clinical specialties, a sharing of expertise and resources necessary to tackle "transdisciplinary" issues that lay outside the concerns of any single society. There was a suggestion that specialty ethics committees, working with the Congress, could also develop and disseminate a descriptive clinical ethic for each of their fields. The delegates believed that such materials would soon become a valued reference for medical educators, hospital ethics committees, physicians, legislators, and the courts. The Congress is seen as suited to serve as a clearinghouse for educational materials produced by its constituent societies. "AAB" The " American Association of Bioethics" is the working title of a proposed umbrella organization that might possibly be created by connecting the current players in the bioethics field. On 11 November, representatives from 31 bioethics organizations, academic centers, and healthcare organizations, met at the New York Academy of Medicine to discuss the need for and practicality of some type of group of bioethicists designed to permit mutual communication and cross-fertilization, enhance scholarship, attend to professional education and development, and facilitate American involvement in international forums and organizations, such as the International Association of Bioethics. Nearly all attending the meeting agreed that coordination and communication in bioethics need improvement, but opinion was divided on what form such an umbrella organization would take and what functions it would perform. The meeting concluded by deciding on a process for selecting a planning committee that will submit a proposal to the representatives of the organizations, institutions, and societies who attended. Add New Components Some critics of bioethics see the machine as lacing certain parts and interconnections. By adding new components, the efficiency and operation of the bioethics enterprise could be improved. In considering these claims, efforts must be made to sort out which of these potentially new components would contribute improvements and which would just be along for the ride. ARENA Applied Research Ethics National Association (ARENA) is a national service organization of about 500 members who are primarily research administrators and others who sit on institutional review boards (IRBs) and/or institutional animal care and use committees. Its headquarters are in Boston, where it shares office space with PRIM&R (Public Responsibility in Medicine and Research), a nonmem-
170
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bership organization that sponsors an annual meeting of individuals, who serve on institutional review boards. Last fall, PRIM&R held its first annual conference on ethics committees and ethical decision making in healthcare, in a crowded 2 days, a nationally renowned faculty delivered a nuts-and-bolts program on the mission, structure, function, and pitfalls of healthcare ethics committees to about 200 attendees, many of whom were just starting to wade into the waters of ethics committees. Sandwiched into the primary meeting was a special session in which ARENA president Bobbette Godding introduced her organization to some 20 conference attendees present. She and Jan Vinicky, an associate in the Bioethics Program at NIH, suggested that more cooperative efforts might be undertaken between ARENA and institutional ethics committees (IECs) by forming and operating regional networks of healthcare ethics committees. The idea met with some confusion and resistance, primarily because insufficient time was given to discussing what mutual interests there might be between IRBs and IECs. Nonetheless, potential links between IRBs and IECs will be discussed, and the subject will be placed on the agenda for the next PRIM&R conference on ethics committees, scheduled for Spring 1993. NSPRCA The National Society for Patient Representation and Consumer Affairs is a 500member organization and an affiliated society of the American Hospital Association. Patient representatives act as agents for the hospitalized patient, explaining and interpreting information, clarifying hospital procedures and routines, and resolving conflicts that may arise between the patient and hospital personnel. There are strong parallels between patient representatives and members of ethics committees. First, both represent diverse backgrounds in education, training, and experience. Second, they both see the patient as their primary focus of attention and see their roles as patient advocates. Third, they both work at the interfaces of hospital care —communicating, coordinating, and interpreting information and resolving problems that may arise among patient, family, and hospital personnel. Fourth, they are both often chosen for their roles because of their interpersonal and negotiating skills, and their willingness to reach for goals that are beyond those stated in job descriptions and minimalist standards of care. The patient representative's involvement in areas related to bioethics is increasing. Since its formation in 1972, the NSPRCA and its members have played an important role in facilitating the organ donation process within hospitals and in working with regional donor recruitment centers. In recent years, NSPRCA annual meetings have boosted the number of sessions devoted to ethical issues. The October 1991 meeting in Denver featured sessions on the ethics of rationing and prioritizing services, the Patient Self-Determination Act (PSD A), institutional culture, and culturally sensitive approaches to patient care. The society has been instrumental in familiarizing hospitals with the PSD A, and many members have direct responsibility for overseeing the implementation of the law in their facilities. Each year, an increasing number of patient representatives are appointed to institutional ethics committees. In the future, the involvement of the patient representative in ethical matters within the hospital will increase.
171
Donald F. Phillips Create a New Model Some critics of bioethics contend that the field has been dominated by the medical profession using the analytical tools of principle-based theoretical philosophy, with patient autonomy clearly accepted as the primary principle honored if and when conflicts of values arose. Calls for other voices to be heard and new models to be developed that steer the field away from such abstract reference points have been made at recent meetings with a diverse membership. APHA The American Public Health Association, established in 1872, is a 50,000-member confederation of 23 multidisciplinary sections from very specific interests (e.g., vision care, statistics, oral health) to very broad areas (e.g., environmental health, medical care, public health education). All the differences, contradictions, rivalries, and disagreements between organized medicine and public health play themselves out at APHA meetings. Ethical concerns are raised in many of the sessions, with rights (for minority or disenfranchised groups) and justice as recurrent themes, and there is a sense of the battle between the individual and society. An explicit focus on ethics within the APHA started about 5 years ago when the Forum on Bioethics proclaimed itself into existence. It is one of six APHA special primary interest groups (SPIGs), which are bodies of self-elected APHA members who share a common occupational discipline or area of interest. During its relatively short existence, the Forum has grown in size and number of programs offered at the APHA annual meeting. This year's November meeting in Atlanta was particularly strong with Forum sessions on reproductive rights issues, the ethics of AIDS research, the implications of predictive genetic screening, healthcare of migrant farm workers, research on public health ethics, futile treatment, ethical consideration in measuring and reducing health risks, and one session, of particular interest for this article, entitled "Beyond Traditionalism: Critical Thinking in Bioethics." Kudos for this strong programming should to Kate Brown, Center for Health Ethics and Policy, Creighton University, Omaha, who organized and arranged most of the Ethics Forum sessions. For the "Beyond Traditionalism" program, Brown assembled a diverse group of voices who laid claim to ethical territory. Robert S. Olick, J.D., executive director of the New Jersey Bioethics Commission, described that state's new law that provides a "religious exemption" from a declaration of death based on neurologic criteria. The exception is viewed as an example of how a law can respect personal religious beliefs, such as those of the Orthodox Jewish community, which does not accept brain death, believing that death should be declared only on the traditional standard of irreversible cardiorespiratory function. The presentation of Patricia Flynn, chair of Health Administration Programs at St. Mary's College, Moraga, California, regarding different perspectives on how ethical problems are framed was more to the point. She bemoaned the fact that the much-touted interdisciplinary nature of ethics committees rings hollow because most committee members, regardless of sex, age, status, occupation, or education, are all operating on the same biomedical model of discourse. She used the term "moral ordering" to refer to the defining, redefining, constructing, reconstructing, and deconstructing involved in negotiating and inter172
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preting competing discourses, each of which seeks legitimacy as the central model for decision making. In her study of more than 40 ethics committee cases, Flynn found that the thought processes and vocabulary of medicine were so endemic to hospital staff, that this single model becomes a screen that, ultimately, is mistaken for reality. What is not important from the biomedical view is not perceived as important; in fact, it is often not perceived at all. The very act of presenting a case before an ethics committee leads the physician into the biomedical format of "age, sex, diagnosis" in which the patient as a person is "profoundly absent from the story." Surprisingly, this same format is strictly adhered to by nurses, social workers, psychologists, lawyers, and even ethicists. The legitimacy of the medical model, Flynn explained, "comes through the structural condition of the medical discourse" — the naming of persons, conditions, and things, which gives the illusion that they are understood. "Language constructs reality; words create worlds," she said. But in the real world of bioethics, there are also discourses of philosophy and ethics, of politics, of sociology, of law, and of everyday life. Flynn cited one case in which a competing system of discourse, presented by a pediatric nurse consultant, successfully challenged the biomedical one, presented by a neurologist. Through the process, a new understanding was gained by the participants, and a different treatment plan, acceptable to all, was arrived at. The successful resolution of this issue points out the value of moral ordering through negotiation, Flynn concluded. "What becomes clear . . . is that committees need to find a way to connect the medical and non-medical models of discourse, so that all involved in the dialogue" can maintain an appropriate focus on the patient and family "and use ethics, medicine, law, and the narrative of the patient" in making ethical decisions. Public health practitioners, with their focus on rights and justice, often see the exclusion of different voices in decision making as being not so much a passive or unconscious omission, as in Flynn's case, but rather a more active denial by those in power to frame the issues in such a way as to make new voices irrelevant. Jan C. Heller, a fellow at the Emory University Center for Ethics in Public Policy and the Professions, Atlanta, used the term "moral boundaries" to define how problems are construed and what sanctions may be imposed to address these problems. Thus, he said, they permit certain questions to be examined and others to be unexamined. Heller argued that the ethics component of the U.S. Human Genome Project draws its moral boundaries so as to leave unexamined some critical questions about implicit background assumptions, contexts, and institutional arrangements that underlie the project. Particularly, it does not address the implications for our healthcare delivery system, should the project realize its far-reaching technological and medical goals. Instead, it concentrates on "interim" ethical, legal, and social problems related to the use of information generated by genome research. In a similar manner, Annette Dula, EDD, a former research associate at the University of Chicago, argued for an African American perspective on bioethics and pointed out that although the field of bioethics has provided critical and respected commentary regarding ethical implications of access to healthcare, the field has not "particularized" lack of access to specific minority groups whose access and status are unequal. 173
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Mark S. Kaplan, Ph.D., University of Illinois at Urbana, pointed out that although many public health policies have historically been founded on utilitarian principles, modern efforts at public hygiene afford those in power an opportunity to expand the social control of certain marginal groups and their "dangerous" behaviors. He suggested that certain HTV/AIDS policies that are meant to protect the public welfare can be used as a mechanism of surveillance and discipline. Another form of moral boundary is the concept and use of the "children's best interest standard." John D. Lantos, M.D., associate director of the University of Chicago Center for Biomedical Ethics, pointed out that in the last decade, certain reproductive choices, such as the use of surrogate mothers, frozen embryos, and children conceived to serve as bone marrow donors, have been criticized on the grounds that they violate the best interests of the children who are produced. Lantos believes the child's best interest standard is ill suited to these decisions for three reasons. 1) In these decisions, the alternative for the child conceived is not to have existed at all. Thus, in deciding whether the particular reproductive choice is in the child's interest, there is only nonexistence to compare the child's interest against. 2) There are no data on outcome for children conceived using new reproductive technologies, and there are no standard measures with which these reproductive choices can be compared. 3) Other reproductive choices are not judged by the best interest standard. Thus, Lantos said, arguments about decisions to conceive a child that invoke the best interests of children are inherently flawed. They frequently disguise other issues, such as concerns about the exploitation of women (a feminist issue) or about the demise of the traditional family (a conservative political issue). These concerns should be dealt with explicitly, Lantos said. AAA The American Anthropology Association held its annual meeting this past November in Chicago and the program was full of sessions, socials, and soirees related to bioethics, many of them under the aegus of the Society of Medical Anthropology, one of 22 societies or associations affiliated with the umbrella organization. Considerable attention as given this year to the topic of how anthropology could bring its "contextual sensitivity" to political, economic, social, and ideological factors that define and complicate bioethical issues. One session, for example, titled "Problematics of personhood at the margins of life," sidetracked normative discussions of personhood to entertain more contestable approaches. Panelists addressed birth, death, and other liminal stages of life across cultures and tried to explain how concepts of personhood are both reinforced and challenged by "problematic persons," such as fetuses, primates, the infirm and disabled, the ungendered, and the surgically altered. Other sessions addressed abortion from a cross-cultural perspective, the interplay of law, biology, and medicine, whereas other individual papers examined ethical considerations in HIV research and the treatment of AIDS patients. A presentation by Anne Burson-Tolpin, West Orange, New Jersey, was similar to that of Flynn's (APHA). Burson-Tolpin looked at how the stylized format of biomedical case presentation given in grand rounds and in other clinical settings and written into the patient's medical record enhances th physician's perspective and ability to view patients as objects. She also concluded that the joking interruptions in oral presentations undermine the transformation of person to pa174
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tient, although such Interruptions represent a culturally permitted way of "amplifying serious biomedical discourse" in dealing with matters that scientific medicine cannot understand. More to the point of this article was a session titled, "Bioethical issues: anthropological perspectives/' which was arranged and co-chaired by Patricia Marshall, Ph.D., Loyola University Stritch School of Medicine, Maywood, Illinois, and Betty W. Lewin, Brooklyn College, two medical anthropologists working in humanities programs within medical schools. Anthropologist Kate Brown, Creighton University, gave the keynote presentation co-authored with philosopher Andrew Jameton, University of Nebraska Medical Center, on the "is" and "ought" of bioethics. They raised three questions: 1. Are values (a) rooted in universal principles; or (b) in the variation of cultural experience? 2. Should/do the legitimacy and limits of an ethical claim, such as autonomy, (a) rest in philosophical claims, or (b) in power relations and rules of a particular social context? 3. Should/do bioethicists (a) focus on points of logic and concept when dealing with ethical problems, or should they (b) focus more on individual negligence and systemic inequities that lead to these problems? If your answer to each of these questions was (b), you are well on your way to understanding "contextual realism." Brown acknowledged some of the camps that are calling for ethical considerations that "reflect the heterogeneity of circumstances and interpretations that figure in ethical dilemmas facing patients, families, and healthcare providers." One such camp is feminist social theory and philosophy championed by Carol Gilligan, Susan Bordo, and others. To achieve a new intellectual maturity, or to get from "is" to "ought," Brown and Jameton think the current intellectual self-reflection in values studies could well prove to be a nurturant soup. We are intrigued with the uncharted possibilities for moral reasoning that lie in the tensions between philosophical ethics and culture, between autonomy and community, between abstract principles and the "real world," but we, and others, are having a devil of a time giving an account of the relationship between these various spheres. Social scientists describe how decisions are made and what relative meaning is given to values in various contexts of bioethics. However, using this "is" information to determine what "ought" to be done or what is right in healthcare decisions and policy is more difficult. Brown and Jameton believe it should be possible to mix a little philosophy, a little anthropology, a little psychology, etc., in order to follow a new line of ethical theory and practice that respects both the facts, as we are coming to know them in context, and also respects the ideal of reason, as we gradually change how we perceive it. They cite the work of Gilligan and Cassel for going beyond mere "description of actual moral judgments by offering ways to measure and balance the relative 175
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merit of different approaches, while avoiding the deadening reductionism to rules, rights, and principles." To go further, Brown and Jameton suggest the following needs: 1. "to expand our modes of moral reasoning to explore the significance of other morally laden responses and motivations, such as honor, courage, anger, shame, guilt, and even love as they are expressed in various contexts." 2. to improve "our ability to resolve disagreements in moral reasoning—however defined." 3. "to expand the ways in which we teach and talk about ethical issues so that we appeal to what Giiligan refers to as the logic of the psyche' as well as 'the formal logic of classification and control.'" Other panelists provided their own examples of how the complexities of bioethical dilemmas can be situated within wider contexts. Two presentations focused on the limitations of principle-based bioethics, particularly with regard to operational definitions of beneficence and autonomy. Jacquelyn Slomka, Ph.D., Office of Bioethics, The Cleveland Clinic Foundation, raised the concern that the current bioethical discourse embodies assumptions and presuppositions about beneficence that do not allow for social, cultural and political meanings that are part and parcel of healthcare. As such, the discourse of bioethics may have the unintended effect of reinforcing the diminishment of the social person that occurs in the healthcare setting. Slomka does not equate beneficence with medical paternalism but rather uses an updated, redefined meaning tied to the obligation of physicians to have personal moral integrity, to use their power responsibly, and to look for what is good and right in each decision. She argues that from a socioculturai perspective, the meaning of "doing good" (i.e., beneficence) in medicine, which assumes that the good is done to patients, does not take into account that patients are defined as persons using a philosophical definition that is often based on abstract criteria such as rationality, creativity, self-awareness, and autonomy. "The social interaction characteristic of all human activity is inconsequential in this notion of the person," Slomka explained. "Furthermore, this atomistic view can be seen as syncretistic with the medical tendency to view human beings as isolated reservoirs of disease, rather than as persons in a social context." "When medical beneficence meets only patients' physical/biological needs, but denies them personhood, certainly the goals of medicine are called into question," Slomka said. "But when ethical discourse fails to address social personhood and the social context of that discourse, then the moral goals of that discourse can also be called into question." One of several concrete examples she used was the caregiver committing time and energy to feed a helpless patient, as opposed to discharging such moral obligation in favor of inserting a feeding tube. When ethical discourse focuses solely on the individual physician/patient relationship while ignoring the social context and implications of ethical 176
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decisions, on what "ought to be" rather than "what is," then the discourse of bioethics holds the danger of reinforcing rather than changing the healthcare status quo and thereby failing in its moral function. Donna J. Keren, Ph.D., Temple University, drew on her first-hand experiences of decision making and ethical justification related to a near-fatal shooting in Mexico and the daily and extraordinary proxy decisions made for the incompetent elderly in Pittsburgh. She noted that although autonomy is a key concept in medical decision making, whether by proxy or by the individual (self), such decisions "are not based on the patient as an individual with a distinct 'best self-interest' but rather as a member of a family of kin group, within which the majority of decisions are made." Keren stressed the point that the set of social relations and obligations associated with kinship and community "comprise the essential precondition to the possession and exercise of autonomy." These presentations and others at the AAA meeting point out how different cultural contexts influence and offer different interpretations and ordering of values. As Brown noted in her comments, these differences inform ethical decisions in both lay and medical worlds. Some of these differences are striking in their contrast to values that we — in the U.S. — may take for granted. By articulating other value systems as a contrast to our own values, anthropologists serve to better clarify our own, otherwise hidden, ethical agenda in healthcare. Bioethics is but one of many areas of study and practice that are undergoing changes as a result of challenges from outside their fields. Evolution, mathematical analysis, experimental psychology, neuropsychology, and artificial intelligence, like bioethics, are having their foundations shaken. The common thread is that each discipline must reexamine how its approach to structuring knowledge is influenced by the context in which the knowledge is gained and how such knowledge affects (and often limits) our perception of how best to apply it. If new voices are to be taken seriously in bioethics, specialized anthropologists probably will be the best guides, through the complex realm of contextual realism, to design the new model of bioethics that will steer clear of the present-day trappings and obstacles. Marshall summed up the expectations of the field by noting,1 Anthropologists can contribute to the fields of medical ethics and bioethics in two significant ways: by calling attention to the cultural underpinnings that sustain and reinforce ethical constructs in matters of health and illness, and by extending the scope of the field through explorations of cross-cultural and intracultural variation in the production of and responses to medical/moral dilemmas."
Note 1. Marshall PA. Anthropology and bioethics. Medical Anthropology Quarterly, March 1992; 61(1):47-71.
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