All of us have been and will be patients, all of us are affected by societal priority-setting and many of us will have to help make health-care decisions for others. If we can all engage more thoughtfully in reflection, conversation and decision-making about health and illness in our own lives, we can all contribute to public discussion about the implications of our individual and societal health-care choices. Such is the work of the University’s Center for Bioethics, Health and Society as described by Ana S. Iltis, associate professor of philosophy and the center’s director, and Nancy M.P. King, the center’s co-director and professor of social sciences and health policy at the School of Medicine.
In recent years Wake Forest has established a master of arts degree program in bioethics, created the bioethics center and focused its first-year student reading assignment last fall on bioethics to provide a stronger grounding in the ethics of health care and biomedical research that might guide students throughout their studies at Wake Forest and afterward. Iltis and King note that bioethics issues align with Wake Forest’s motto, Pro Humanitate. “Its multifaceted approach to human life in today’s world takes account of the questions and problems we all have in common, like making health care choices, being ill, and experiencing different ages and stages of life,” they have written. “Attention to bioethics is a natural outgrowth of a liberal education that equips us to talk together and work together across a wide range of perspectives and experiences. All humans are moral agents, and informed ethical discourse provides a way to understand and address disagreements respectfully and productively.”
With the University’s strong commitment to global affairs and international studies, bioethics also has important global dimensions, including understanding how experiences of health and illness, appropriate treatment and research priorities differ across contexts and cultures.
Out of a major University bioethics conference in 2009 came a book of essays last year, “Bioethics, Public Moral Argument, and Social Responsibility,” which seeks to illuminate these larger societal questions. Edited by King and Michael J. Hyde, University Distinguished Chair in Communication Ethics, the book encourages scholars to engage in “meaningful conversation with a willing and thoughtful public” about biomedical technology and its place in modern society. King and Hyde, in their introduction to the book, issue the moral call to conversation. Following is an edited excerpt:
The birth of scientific medicine sharpened (a) long-standing dispute between the arts and humanities and the sciences over the degree of respect that each owes the other. The biotechnology of utmost importance to medicine today is arguably not the word, but rather those other tools that enhance the scientific capacity of medicine to prevent, treat or cure a host of life-threatening illnesses: tools like immunization against childhood virus diseases, antibiotics for bacterial infections, surgical procedures for organ transplantation, life-sustaining ventilators, respirators and dialysis machines, cancer chemotherapy, genetic engineering and embryonic stem cell research. The view of medical science as exclusively to save, enhance and extend life presents a false but persistent dichotomy: that patients must choose either “the doctor who will cure you or the one who will hold your hand and talk to you.” There is need for both — and even as biotechnology advances, it is becoming harder to believe that either can happen without the other. Human beings desire both cure and care.
The goals of biomedical technology thus incorporate a key public concern about the meaning of being human. When the case of Terri Schiavo first made news, many bioethics scholars had the initial reaction: “But we’ve already solved that problem!” Readers will recall that Terri Schiavo was a young woman who unexpectedly collapsed, and after a period of time was diagnosed as being in a permanent vegetative state. She had no formal advance directive. After an aggressive search for means to restore her awareness, cognition and dignity, her husband concluded that she could not recover, but her parents concluded that she had been misdiagnosed and was treatable. When the legal battles began over who spoke for Terri, she joined the short list of young women whose medical fates have shaped American views about the life worth living: first, in the 1970s, Karen Ann Quinlan; then, in 1990, Nancy Cruzan; and now, in the 21st century, Terri Schiavo.
Why did bioethics scholars think that the Terri Schiavo problem had been solved by Karen Quinlan and Nancy Cruzan? By enabling the long-term survival of patients in various states of permanent unconsciousness, technology had created both a new diagnosis and a new dilemma. The stories of Karen Quinlan and Nancy Cruzan spurred profound legal and policy changes to address the new diagnosis and the role of families in making health-care decisions for adults newly unable to decide for themselves. Yet as Art Frank has observed, when patients and families find themselves facing this dilemma, it is always new for each of them. Therefore, the value placed on human life and human dignity in that diminished state must be adjudicated anew, in every new instance, through respectful moral discourse. This discourse often involves a great many stakeholders seeking a voice: not only the patient and the patient’s legally authorized decision-maker(s), family and friends, but also the health care team, the institution, the state, advocacy groups, scientists and scholars with different perspectives, health insurers paying the bills and more.
Public moral argument is thus called for to elucidate society’s role, both at the end of life and about the ends of life. That role is messy, disputed, limited — and essential. Much discussion of biotechnological advances in the U.S. rests on the rights of individuals to make autonomous choices and on societal decisions not to interfere with willing buyers and sellers. We might simply acknowledge that this (admittedly incomplete) laissez-faire position is the role that society has chosen, that it has particular consequences, and that we could, but need not, choose otherwise. But the current, intensifying democratic debate about related matters, such as health insurance reform, has begun to broaden our public vision, to include awareness of cost, a sense of collective responsibility to help others and the need to work together to set limits we can live with. Science and society have built an exceedingly and increasingly complex community around biomedical technology. Scholars, scientists, policymakers and the public all therefore need to be able to talk together in this community. This important effort brings together the enterprises of bioethics and communication ethics, with their shared interests in the health of human beings and in the social, political and technical ways of using language to affect health and health care.
** From “Bioethics, Public Moral Argument, and Social Responsibility,” edited by Nancy M.P. King and Michael J. Hyde (Routledge Taylor and Francis Group), 2011, pp. xi – xii.
