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She wanted to teach French. Instead, she entered the complex world
of ethical health-care decisionmaking. Now she teaches the language
of caring. |
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Q U I C K S C A N |
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The calls and letters come from every part of the country and places like Australia, France and Japan. Professors at universities and research centers, major health-care institutions and community hospitals, anxious parents facing critical health decisions, religious communities and former students—they all get the number. And they get answers. They gain insight from a tall, dark-haired, gracious woman with the enthusiasm of a teenager, the energy of a five-year-old and the wisdom of the ancients. Carol Taylor, C.S.F.N., R.N., Ph.D., is the director of clinical bioethics at Georgetown University. She is also a senior research scholar at the Kennedy Institute of Ethics and assistant professor of nursing at Georgetown University School of Nursing. Colleagues refer to her as “a neat lady.” Clients describe her as a person who can make complex and difficult topics clear and compelling to people who know little about the new genetic research revolutionizing medicine and health-care practice. The initials after her name refer to three of the four or five roles she plays in her richly demanding life. Carol Taylor is a religious, a member of the Sisters of the Holy Family of Nazareth whose provincial house is in Philadelphia. Sister Carol is a nurse, widely experienced in hospital and community care, particularly among the elderly, and a speaker and consultant to professional organizations, health-care systems, legislative bodies and religious congregations. She is also a scholar and a teacher with advanced degrees from The Catholic University of America and Georgetown University. And, oh, yes, she is East Campus chaplain-in-residence to undergraduates in Loyola Xavier Ryder Hall during her spare evening hours. Sister Carol’s area of expertise—bioethics—deals with all of the ethical issues associated with modern health care—from commonly understood topics like patients’ rights, organ donation, managed care and parental consent to less-well-understood areas such as cloning, human experimentation and gene therapy. She deals with birth-to-death issues from reproductive technologies to refusal of treatment and brain death. Through it all, Sister Carol and the staff of the Georgetown Center work to help bring about an ethical, compassionate and trustworthy health-care system supported by health policies and legislation that benefit everyone, at every level of income. To all of it, they bring the richness of the Catholic moral tradition along with their expert knowledge and experience. When Sister Carol Taylor sat down for an interview with me last spring, she was anxious to share why the average Catholic, indeed the average person of any faith, should be interested in the complex subjects covered by the term bioethics. With her typical ability to cut to the heart of things, she said, “Bioethics is important to everyone because we are all being born, living and dying, and modern science has given us a million ways to do these things. We need to say, ‘How are our health professionals, our politicians, our researchers, shaping those experiences?’ “People are making decisions about whether to have children, dealing with varying degrees of injury and illness and dying. While some of this is easy, a lot is fraught with ethical dilemmas. “In modern society we want to control everything,” she says. With an easy laugh that comes often, even to so serious a topic, Sister Carol acknowledges that she claims no exception to this tendency. But she says, “We need to hear faith-based voices ask: What does it mean to control in ways that respect our human dignity? These voices must help people think about these things before they have to make a difficult decision.” As an example, she cites the vast knowledge that is becoming available through genetic testing. People can know, for instance, what specific diseases they are most likely to contract as they grow older. New medicines will be able to treat some diseases without side effects. People will be able to eliminate certain genetic defects in children before they are born. Such knowledge raises profound questions. How shall we best treat a child who is born with a genetic disease or defect? How shall we share the results of our knowledge with the children who are affected? Do I really want to know that I am at great risk for breast cancer or Huntington’s Chorea? What are the risks of knowing? What are the risks of not knowing? How will my life change as a result of this genetic information about myself? “Knowledge is not always an easy thing,” Sister Carol says. “We used to think that disease was outside us. If we could identify and possibly eliminate the cause, we could cure or avoid it. Now, with certain genetic disorders, we know that we are the disease. Our genes are the source of the disorder. How will this affect us?” This woman in the short veil who moves as quickly and animatedly as she speaks wasn’t always interested in the science and philosophy that are the academic underpinnings for her work. In fact, she wasn’t interested in those subjects at all. Sister Carol’s parents, Mildred and Ray Taylor, and her three sisters and brother took for granted her decision to enter a religious order. “I knew I wanted to be a sister in the same way other girls knew they wanted to get married,” Carol says. “And I wasn’t very sophisticated about the way I chose my community,” she adds. “I was very comfortable when I visited the Holy Family sisters, and since teaching was their primary work, I decided to join them.” Because her sense of joy is almost palpable, it is tempting to say that she then lived happily ever after. But that would not tell the whole story. At the end of her postulant year, young Carol Taylor told her superior that she wanted to teach French. The community, however, had other plans for this brilliant student. Their college, Holy Family College, had a new baccalaureate program in nursing and they wanted a sister on this faculty. They wanted Carol to be a nurse! Quickly she ticked off several reasons why she should not study in a field for which she felt no interest. “No one in my family had been a nurse and I never even considered that profession,” she says. But the needs of her congregation took precedence over her own early ambition, and she agreed to earn her bachelor of science degree in nursing—with highest honors. “I loved it from the beginning,” she says, “and after I finished my master’s degree in medical-surgical nursing, I loved teaching in the nursing department at Holy Family.” Gerontology, the study of the health needs of the elderly, soon became Sister Carol’s special interest. She took her students on forays into Philadelphia where so many elderly people lived in poverty and where others lived lives lacking in the most basic supports. Those trips were the spur that led her to apply to a summer program at Georgetown, which would deal with some basic questions that occupied her mind as a result of her work. From there it was just a short but demanding jump to the field of bioethics, which now dominates her thoughts, work and prayers. Soon Sister Carol was presented with an unexpected opportunity to become a research assistant to Dr. Edmund Pellegrino, who was then head of the Kennedy Institute of Ethics and soon to be a founder of Georgetown’s new Center for Clinical Bioethics. Dr. Pellegrino was looking for a unique group of new faculty who would be experienced Catholic practitioners as well as scholars in areas that are central to the work of the Center. Dr. Pellegrino offered Sister Carol the position of research scholar. With the encouragement of Leo O’Donovan, S.J., then Georgetown’s president, and the support of her community, she accepted it “with humility and great joy. “The people here are the greatest,” she says, “and there is excitement and challenge in every day.” A short walk down the hall of Building D on the way to lunch at the French Embassy just across Reservoir Road brought that statement home. Colleagues seemed to appear every few hundred yards to ask a question, comment on a project or check an appointment. “We constantly need to prioritize projects and requests,” she says, “and our staff of six faculty, six fellows and a large number of faculty associates and affiliated scholars work on things as diverse as a bioethics curriculum for high schools to consultations on end-of-life decisionmaking.” Since her original appointment, Sister Carol has been thinking, teaching and speaking continually about the moral obligations of health-care professionals. Over lunch in the bright Embassy dining room, she discussed two ways of thinking about this issue. The first takes health care to be a moral obligation of moral societies and holds that physicians, nurses and all other health-care professionals have a moral obligation to be trustworthy. Their primary obligation must be to secure the patient’s health and well-being. A second point of view considers health care a commodity to be sold. She obviously believes in the first model, but when she speaks to groups, she is well aware that many in the audience do not come from the Catholic faith tradition or—perhaps—from any faith tradition. So she begins by saying, “Tell me what you believe and why you believe it.” Then she asks, “What are the consequences that result from your beliefs?” These discussions with students and clients are built around basic principles that lead to practical decisions. A typical discussion might ask whether a student believes that children are gifts of God and nature or products that we produce. The answer to the question will dictate the type of medical decisions that will be made in this area. The objective, of course, is to help medical professionals and others recognize that important moral questions lie at the heart of these decisions. “Many people who come to me face dilemmas that are forced upon them. My role,” she says, “is to help them make a decision, to give them a way of thinking about it that they didn’t have before. At the end of the day they need to be at peace with themselves, with their God and with the people that matter.” Sister Carol talks about things like the Human Genome Project and new areas of biotechnology with the ease with which the average person talks about the weather or his child’s latest report card. Her interest and knowledge about her field are impressive. But when she talks about teaching, a great sense of enthusiasm creeps into her voice, and she readily admits that it is the most satisfying aspect of her work. “When I teach third-year medical students, I deal with the competencies we need to be ethical persons as we encounter everyday moral dilemmas. My goal is to help them make decisions that advance the health of patients but honor the integrity of everyone who participates in the process. “I get good feedback from students,” she says, “but sometimes it comes long after the course is over. One of the best things happened just the other day. “I ran into a young woman I had not seen for a year who told me that she and her classmates had coined a new term,” Sister Carol says. “They used it whenever someone raised ethical issues in class or in late-night discussions. They called them ‘Sister Taylor Moments.’” It was obvious that her laughter and sense of satisfaction came not from ego but from the knowledge that these future physicians were thinking in ways that would humanize their practice of medicine. “Teaching is part of almost everything I do,” she says, “and I am never happier than when someone calls from a hospital or medical department and says, ‘We want to let you know what we’ve done since your visit. We’re working to change the system.’” At the same time Sister Carol admits that her greatest frustrations come when she is dealing with people who “don’t get it,” people who don’t understand why ethics matters. She mentions other frustrations: a culture in a hospital or a school that refuses to look at problems within the health-care system and make changes based on human dignity and need; institutional managers who look at everything from a view of compliance, simply wanting to meet a set of regulations; legislators and other responsible persons who ignore the health-care needs of our most vulnerable members. Sister Carol’s faith is the obvious touchstone in her life. “Progress is good, but are there ways that run counter to our dignity?” she asks. “We don’t know enough yet to do some things—like gene therapy—safely. “We have to trust that we are going down the right road,” she adds. “We’re confident that God is leading us, that God’s spirit is in the world. We’ve made some big mistakes and we’ll make more, but we’ve done some wonderful things. That’s why it’s so important that good people come together to reflect and talk.” Sister Carol maintains, “We have to create a vision to strive for and a culture that supports people. In thinking about the gospel of life, it’s easy to say what we’re opposed to. What we all need to do is ask ourselves what it means to be a Catholic, to be one with our brothers and sisters.” This insightful woman often uses five guiding principles, suggested by Jesuit theologian Bernard Lonergan, in her work in bioethics. She first pays attention to everything about a particular situation or experience. She asks questions, then looks at evidence: What am I seeing? What am I not seeing? Then she applies reason and common sense in making a prudent judgment. Finally, she commits everything to God’s love. Any doubts that people might have about a possible conflict between science and religious faith would easily disappear in the presence of Carol Taylor. She is not afraid to delve into any subject, to ask any question. She credits herself with a gift of synthesis, of being able to draw ideas together, of being a bridge. At the same time, her life has been spent “going where God leads” which, she says, “is different from stepping forward yourself.” An anonymous writer has said, “Be a disciple! Care more than others think necessary. Trust more than others think wise. Serve more than others think practical. Expect more than others think possible.” The awesome and often frightening world of biotechnology has a desperate need for leaders who put discipleship, care, trust, service and high expectations at the forefront of their work. Carol Taylor has taken her gifts to that world in service to God, the Church and all humanity.
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Margaret Gordon Kender is a member of the board of trustees
of De Sales University (formerly known as Allentown College), where
she was vice president for student affairs until her retirement.
She has also written for Georgetown University Press and Today’s
Catholic Teacher. Her interview with Franciscan artist Michael
O’Neill McGrath appeared in St.
Anthony Messenger in April 2001. |
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Center for Clinical Bioethics Consult Service The Center’s service exists to clarify the ethical issues in specific cases and facilitate discussion among parties involved. This 24-hour on-call service is without charge. To initiate, call the Page Operator at Georgetown University at 202-687-7243. The pager number for the consultant on call is 202-668-0770. The Kennedy Center, Georgetown University, Box 571212, Washington, D.C. 20057-1212, phone 202-687-8099. The Kennedy Center offers a variety of print publications, the world’s largest bioethical reference library and an online database on bioethics. It also lists Web links to other international sources. • The Linacre Centre for Healthcare Ethics The Linacre Centre in London, England, promotes understanding of Catholic teaching on biomedical ethics issues from abortion to withdrawing and withholding treatment. Many resources are available online. • The National Catholic Bioethics Center The NCBC is a membership site, but it offers bioethics resource materials to the public in packets for $8 each in 21 areas, including euthanasia and reproductive technologies. The order form is available online but must be mailed to the Center address: 159 Washington St., Boston, MA 02135. Call 617-787-1900 for more information. The Center for Clinical Bioethics offers a consultation service to serve individuals and institutions facing health-care decisions. Sister Carol was invited to share some typical concerns that often prompt requests for a consult. Medical Futility “More and more often, we are asked to consult when there is disagreement about the use of life-sustaining technologies (ventilators, dialysis, artificial nutrition and hydration, medications) when these are judged by clinicians to be merely prolonging a patient’s dying, sometimes in a cruel and inhumane way. Most often these conflicts arise when the family of a patient who can no longer speak for himself or herself refuse to authorize a ‘do not attempt to resuscitate order’ or the withholding or withdrawing of life-sustaining treatment which is judged to be ineffective or disproportionately burdensome. For Christians who believe that there is a time when God calls us all home, the challenge is to discern when is that moment!” Parenting Decisions “We are sometimes called to talk with pregnant couples who have received the ‘bad news’ that their child has a serious anomaly, some of which are life-threatening. In these situations our role is to make sure that the couple understand the medical information they have been provided, what this is likely to mean for their child and family, what supporting resources are available to them (which in some cases will be a prenatal hospice program), and for those with religious beliefs to explain what their respective Church traditions teach. Conflict may be present within an individual (‘I want to be a good mother, I don’t want my child to suffer, I want to do what God wants us to do...’), between parents, among different members of the health-care team, or between the parents and members of the health-care team.” HIV Testing “A recent consult was called to explore the advisability of promoting a new and quick method of testing for HIV infection, which could be made available in bars and other sites where high-risk populations gather. Proponents argued that making the testing more readily available will result in the earlier identification of individuals who are HIV-positive so that treatment can be started earlier and lifestyle changes made to decrease transmission. Opponents argued that counseling is an essential component of testing because of all the implications related to one’s HIV status.” Scarce Resources and Obligations to Treat “Increasingly our organizational ethics consultations at both the micro and macro level address our moral obligations to provide needed health care that no one is willing or able to finance. With increasing numbers of uninsured or underinsured and the financial crises afflicting academic health centers and other health-care organizations, this is a growing problem.” Organizational Questions About Safety and Quality “The new national attention being paid to medical errors and the public demand for reform have resulted in numerous consults to work with systems and organizations to develop institution-wide cultures that promote patient and employee safety.”
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