PHIL 347 Medical Ethics GUIDANCE DOCUMENT FOR TERM PAPER 1

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PHIL 347 Medical Ethics GUIDANCE DOCUMENT FOR TERM PAPER 1. 2. 3. 4. Convert your chosen narrative to Case Study Term Paper: Designed Case Study with the Discussion Questions below Use the Discussion Questions below HINT: Use “Bioethical Analysis Framework” to aid you in answering the questions. 5. Discussion Questions 1. What is particularly troubling to you about this Case? 2. What ethical issues loom large in the Case? 3. Who are the “persons of interest” featured in this Case 4. What is the harm done? To whom? 5. Why are the interests or preferences of the stakeholders? 6. Do you have any sympathy for any person or group featured in the Case? Why? Why not? 7. What lessons can we learn from this Case at an individual level, institutional level, and societal level? Be specific! 8. Should the main situation your Case Study addresses be allowed to continue unabated? Why? Why not? 9. What, if anything, would you like to be different if we are to prevent such unethical acts from happening again? 10. What options do we have? 11. What are the consequences of the options? 12. What is/are the best option(s)? 13. Using the ethical theories and principles we have discussed in class, justify this/these option(s)? THE PATIENT-PHYSICIAN RELATIONSHIP Narrative Medicine A Model for Empathy, Reflection, Profession, and Trust Rita Charon, MD, PhD M S LAMBERT (NOT HER REAL name) is a 33-year-old woman with Charcot-MarieTooth disease. Her grandmother, mother, 2 aunts, and 3 of her 4 siblings have the disabling disease as well. Her 2 nieces showed signs of the disease by the age of 2 years. Despite being wheelchair bound with declining use of her arms and hands, the patient lives a life filled with passion and responsibility. “How’s Phillip?” the physician asks on a routine medical follow-up visit. At the age of 7 years, Ms Lambert’s son is vivacious, smart, and the center—and source of meaning—of the patient’s world. The patient answers. Phillip has developed weakness in both feet and legs, causing his feet to flop when he runs. The patient knows what this signifies, even before neurologic tests confirm the diagnosis. Her vigil tinged with fear, she had been watching her son every day for 7 years, daring to believe that her child had escaped her family’s fate. Now she is engulfed by sadness for her little boy. “It’s harder having been healthy for 7 years,” she says. “How’s he going to take it?” The physician, too, is engulfed by sadness as she listens to her patient, measuring the magnitude of her loss. She, too, had dared to hope for health for Phillip. The physician grieves along with the patient, aware anew of how disease changes everything, what it means, what it claims, how random is its unfairness, and how much courage it takes to look it full in the face. Sick people need physicians who can understand their diseases, treat their The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence, called narrative medicine, is proposed as a model for humane and effective medical practice. Adopting methods such as close reading of literature and reflective writing allows narrative medicine to examine and illuminate 4 of medicine’s central narrative situations: physician and patient, physician and self, physician and colleagues, and physicians and society. With narrative competence, physicians can reach and join their patients in illness, recognize their own personal journeys through medicine, acknowledge kinship with and duties toward other health care professionals, and inaugurate consequential discourse with the public about health care. By bridging the divides that separate physicians from patients, themselves, colleagues, and society, narrative medicine offers fresh opportunities for respectful, empathic, and nourishing medical care. www.jama.com JAMA. 2001;286:1897-1902 medical problems, and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses.1,2 A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. This essay describes narrative competence and suggests that it enables the physician to practice medicine with empathy, re- ©2001 American Medical Association. All rights reserved. flection, professionalism, and trustworthiness.3 Such a medicine can be called narrative medicine.4 As a model for medical practice, narrative medicine proposes an ideal of care and provides the conceptual and practical means to strive toward that ideal. Informed by such models as biopsychosocial medicine and patient-centered medicine to look broadly at the patient and the illness, narrative medicine provides the means to understand the personal connections between patient and physician, the meaning of medical practice for the individual physician, physicians’ collective profession of their Author Affiliation: Division of General Medicine, College of Physicians and Surgeons of Columbia University, New York, NY. Corresponding Author and Reprints: Rita Charon, MD, PhD, Division of General Medicine, College of Physicians and Surgeons of Columbia University, PH 9-East, Room 105, 630 W 168th St, New York, NY 10032 (e-mail: rac5@columbia.edu). The Patient-Physician Relationship Section Editor: Richard M. Glass, MD, Deputy Editor. (Reprinted) JAMA, October 17, 2001—Vol 286, No. 15 1897 Downloaded From: http://jama.jamanetwork.com/ by a HealthPartners - Regions Hospital User on 03/24/2016 NARRATIVE MEDICINE ideals, and medicine’s discourse with the society it serves.5,6 Narrative medicine simultaneously offers physicians the means to improve the effectiveness of their work with patients, themselves, their colleagues, and the public. To adopt the model of narrative medicine provides access to a large body of theory and practice that examines and illuminates narrative acts.7 From the humanities, and especially literary studies, physicians can learn how to perform the narrative aspects of their practice with new effectiveness. Not so much a new specialty as a new frame for clinical work, narrative medicine can give physicians and surgeons the skills, methods, and texts to learn how to imbue the facts and objects of health and illness with their consequences and meanings for individual patients and physicians.8,9 THE TURN TOWARD NARRATIVE KNOWLEDGE Not only medicine but also nursing, law, history, philosophy, anthropology, sociology, religious studies, and government have recently realized the importance of narrative knowledge. 10-13 Narrative knowledge is what one uses to understand the meaning and significance of stories through cognitive, symbolic, and affective means. This kind of knowledge provides a rich, resonant comprehension of a singular person’s situation as it unfolds in time, whether in such texts as novels, newspaper stories, movies, and scripture or in such life settings as courtrooms, battlefields, marriages, and illnesses.14-16 As literary critic R. W. B. Lewis17 writes, “Narrative deals with experiences, not with propositions.” Unlike its complement, logicoscientific knowledge, through which a detached and replaceable observer generates or comprehends replicable and generalizable notices, narrative knowledge leads to local and particular understandings about one situation by one participant or observer.18,19 Logicoscientific knowledge attempts to illuminate the universally true by transcending the particular; narrative knowledge attempts to 1898 illuminate the universally true by revealing the particular. Narrative considerations probe the intersubjective domains of human knowledge and activity, that is to say, those aspects of life that are enacted in the relation between 2 persons. Literary scholar Barbara Herrnstein Smith20 defines narrative discourse as “someone telling someone else that something happened,” emphasizing narrative’s requirement for a teller and a listener, a writer and a reader, a communion of some sort. The narratively competent reader or listener realizes that the meaning of any narrative—a novel, a textbook, a joke— must be judged in the light of its narrative situation: Who tells it? Who hears it? Why and how is it told?21-23 The narratively skilled reader further understands that the meaning of a text arises from the ground between the writer and the reader,24,25 and that “the reader,” as Henry James writes in an essay on George Eliot, “does quite half the labour.”26 With narrative competence, multiple sources of local—and possibly contradicting—authority replace master authorities; instead of being monolithic and hierarchically given, meaning is apprehended collaboratively, by the reader and the writer, the observer and the observed, the physician and the patient. NARRATIVE COMPETENCE IN MEDICINE Medicine has never been without narrative concerns, because, as an enterprise in which one human being extends help to another, it has always been grounded in life’s intersubjective domain.27,28 Like narrative, medical practice requires the engagement of one person with another and realizes that authentic engagement is transformative for all participants. As a legacy of the developments in primary care in the 1960s and 1970s, patient-physician communication, and medical humanities, medicine has become increasingly schooled in narrative knowledge in general and the narratives of patients and physicians in particular.29-31 This growing narrative so- JAMA, October 17, 2001—Vol 286, No. 15 (Reprinted) phistication has provided medicine with new and useful ways in which to consider patient-physician relationships, diagnostic reasoning, medical ethics, and professional training.32-35 Medicine can, as a result, better understand the experiences of sick people, the journeys of individual physicians, and the duties incurred by physicians toward individual patients and by the profession of medicine toward its wider culture.36-38 Medical practice unfolds in a series of complex narrative situations, including the situations between the physician and the patient, the physician and himself or herself, the physician and colleagues, and physicians and society. The following sections will summarize the contributions of narrative medicine to each of these 4 situations. Other important narrative situations exist in medicine as well, although they will not be discussed in this essay, such as between the physician and his or her family, between patients and their family members, and among patients. PATIENT-PHYSICIAN: EMPATHIC ENGAGEMENT As patient meets physician, a conversation ensues. A story—a state of affairs or a set of events—is recounted by the patient in his or her acts of narrating, resulting in a complicated narrative of illness told in words, gestures, physical findings, and silences and burdened not only with the objective information about the illness but also with the fears, hopes, and implications associated with it.39 As in psychoanalysis, in all of medical practice the narrating of the patient’s story is a therapeutically central act, because to find the words to contain the disorder and its attendant worries gives shape to and control over the chaos of illness.40-43 As the physician listens to the patient, he or she follows the narrative thread of the story, imagines the situation of the teller (the biological, familial, cultural, and existential situation), recognizes the multiple and often contradictory meanings of the words used and the events described, and in some way enters into and is moved by the nar- ©2001 American Medical Association. All rights reserved. Downloaded From: http://jama.jamanetwork.com/ by a HealthPartners - Regions Hospital User on 03/24/2016 NARRATIVE MEDICINE rative world of the patient.44,45 Not unlike acts of reading literature, acts of diagnostic listening enlist the listener’s interior resources—memories, associations, curiosities, creativity, interpretive powers, allusions to other stories told by this teller and others—to identify meaning.46 Only then can the physician hear—and then attempt to face, if not to answer fully—the patient’s narrative questions: “What is wrong with me?” “Why did this happen to me?” and “What will become of me?” Listening to stories of illness and recognizing that there are often no clear answers to patients’ narrative questions demand the courage and generosity to tolerate and to bear witness to unfair losses and random tragedies.47 Accomplishing such acts of witnessing allows the physician to proceed to his or her more recognizably clinical narrative tasks: to establish a therapeutic alliance, to generate and proceed through a differential diagnosis,48 to interpret physical findings and laboratory reports correctly, to experience and convey empathy for the patient’s experience,49 and, as a result of all these, to engage the patient in obtaining effective care. If the physician cannot perform these narrative tasks, the patient might not tell the whole story, might not ask the most frightening questions, and might not feel heard.50 The resultant diagnostic workup might be unfocused and therefore more expensive than need be, the correct diagnosis might be missed, the clinical care might be marked by noncompliance and the search for another opinion, and the therapeutic relationship might be shallow and ineffective. Despite—or, more radically, because of—economic forces that shrink the time available for conversation and that limit the continuity of clinical relationships, medicine has begun to affirm the importance of telling and listening to the stories of illness. As practice speeds up, physicians need all the more powerful methods for achieving empathic and effective therapeutic relationships. Narrative skills can provide such methods to help physicians join with their patients, honoring all they tell them. PHYSICIAN-SELF: REFLECTION IN PRACTICE Altruism, compassion, respectfulness, loyalty, humility, courage, and trustworthiness become etched into the physician’s skeleton by the authentic care of the sick. Physicians absorb and display the inevitable results of being submerged in pain, unfairness, and suffering while being buoyed by the extraordinary courage, resourcefulness, faith, and love they behold every day in practice. Through authentic engagement with their patients, physicians can cultivate affirmation of human strength, acceptance of human weakness, familiarity with suffering, and a capacity to forgive and be forgiven. Diagnosis and treatment of disease require schooled and practiced use of these narrative capacities of the physician. Indeed, it may be that the physician’s most potent therapeutic instrument is the self, which is attuned to the patient through engagement, on the side of the patient through compassion, and available to the patient through reflection.51 Reflective practitioners can identify and interpret their own emotional responses to patients, can make sense of their own life journeys, and so can grant what is called for—and called forth—in facing sick and dying patients.52,53 When sociologists studied medicine in the 1960s, they observed physicians to practice medicine with “detached concern.”54 Somehow, this field observation became a normative prescription, and physicians for decades seemed to consider detachment a goal. Today, relying on newly emerging knowledge from narrative disciplines, physicians are learning to practice medicine with not detached but engaged concern, an approach that requires disciplined and steady reflection on one’s practice.55-57 As reflective practitioners, physicians have turned to a study of the humanities, especially literature, to grow in their personal understanding of ill- ©2001 American Medical Association. All rights reserved. ness.58 Literature seminars and reading groups have become commonplace in medical schools and hospitals, both for physicians to read wellwritten stories about illness and to deepen their skills as readers, interpreters, and conjurers of the worlds of others.59-61 Having learned that acts of reflective narrating illuminate aspects of the patient’s story—and of their own— that are unavailable without the telling, physicians are writing about their patients in special columns in professional journals and in books and essays published in the lay press.62-65 Increasingly, physicians allow patients to read what they have written about them, adding a therapeutic dimension to a practice born of the need for reflection.66 Through the narrative processes of reflection and self-examination, both physicians and patients can achieve more accurate understandings of all the sequelae of illness, equipping them to better weather its tides. PHYSICIAN-COLLEAGUES: PROFESSION The ordinary, day-to-day professional actions of physicians in research, teaching, and collegial life are saturated with narrative work and can be made more effective once recognized as such. It is only with narrative competence that research proceeds, teaching succeeds, clinical colleagueship achieves its goals, and the profession of medicine remains grounded in its timeless, selfless commitment to health. Scientific research results from the muscular narrative thrust of first imagining and then testing scientific hypotheses, and it relies on narrative inventiveness and imagination as well as scientific training.67 Like medicine’s theoretical knowledge, its practical knowledge is issued in narrative and mastered through time. The student becomes the physician by functioning as a medium for medicine’s continuity of knowledge, learning about diseases in the process of living through their passages.68 No physician mobilizes his or her practical knowledge about a disease without having mastered the se- (Reprinted) JAMA, October 17, 2001—Vol 286, No. 15 1899 Downloaded From: http://jama.jamanetwork.com/ by a HealthPartners - Regions Hospital User on 03/24/2016 NARRATIVE MEDICINE quential stories imagined, over time, to explain its symptoms, from dropsy to the downward limb of the Starling curve to diastolic dysfunction. In professional life, physicians rely on one another—as audience, witness, reader—for honesty, criticism, forgiveness, and the gutsy blend of uncertainty and authority contained in the phrase, “We see this.”69 From interns up all night together to the surgeon and the internist moving through the dark of a patient’s illness, physicians grow to know one another with the intimacy and the contention of siblings, affirming one another’s triumphs, hearing one another’s errors, and comforting one another’s grief.70 Medicine is considered a profession because of, in part, the strength of these bonds among physicians. Certified to educate and to police one another, physicians accrue responsibility for one another’s competence and conscience. Recent urgent calls for professionalism signal physicians’ widening failures to accept and enact their commitment to individually and collectively uphold their profession’s ideals.71,72 Instead, physicians seem isolated from one another and from their colleagues in nursing, social work, and other health professions and divided from their ideals and disconnected from their broad professional goals in the face of narrow, competitive drives toward individual distinction or reward.73 To profess is a narrative act. Perhaps the most effective methods to strengthen professionalism in medicine are to endow physicians with the competence required to fulfill their narrative duties toward one another: to envision the stories of science, to teach individual students responsibly, to give and accept collegial oversight, and to kindle and enforce the intersubjective kinship bonds among health care professionals. Only when physicians have the narrative skills to recognize medicine’s ideals, swear to one another to be governed by them, and hold one another accountable to them can they live up to the profession to serve as physicians. 1900 PHYSICIAN-SOCIETY: THE PUBLIC TRUST Physicians are conspicuous members of their cultures, anointed as agents of social control who deploy special powers to rescue, heal, and take command. Granting tonic authority to its physicians while regarding them with chronic suspicion, the public commands physicians to understand and treat disease while doing no harm. While holding physicians accountable to these public expectations, patients also yearn for such private benevolence from their physicians as tenderness in the face of pain, courage in the face of danger, and comfort in the face of death. Of late, medicine in the United States has experienced highly publicized reversals in public trust with accusations of overbilling for services, withholding from patients the potential risks of research, and deriving financial benefit from professional knowledge.74,75 Medicine’s—if not individual physicians’— trustworthiness has been called into question.76,77 Yet, patients realize that they cannot explicitly tell physicians how to practice medicine. They must have implicit trust in the virtue and wisdom of those who care for the sick. The contradictions between a medical system that must be governed from outside and a medical system that has earned the public trust have achieved great urgency. The US culture is now actively and contentiously restructuring its health care system. Having experienced the early phases of a marketplacedriven health care system and having failed in its first attempt at health care system reform, the nation is attempting to open collective discourse in politics and the media about the value to be placed on health and health care.78,79 Only sophisticated narrative powers will lead to the conversations that society needs to have about its medical system. Physicians have to find ways to talk simply, honestly, and deeply with patients, families, other health care professionals, and citizens. Together, they must make responsible choices about pain, suffering, justice, and JAMA, October 17, 2001—Vol 286, No. 15 (Reprinted) mercy. Not scientific or rational debates, these are grave and daring conversations about meaning, values, and courage. They require sophisticated narrative understanding on all conversationalists’ parts of the multiple sources of meaning and the collaborative nature of authority called on to resolve issues of health and illness. With the narrative competence necessary for serious and consequential discourse, patients and physicians together can describe and work toward a medical system undivided in effectiveness, compassion, and care. RESEARCH AND PROGRAMMATIC IMPLICATIONS Narrative medicine suggests that many dimensions of medical research, teaching, and practice are imbued with narrative considerations and can be made more effective with narrative competence. Already, a spontaneous interest in narrative medicine has germinated from many centers in the United States and abroad, confirming the usefulness and fit of these frameworks and practices for medicine and other health care professions.80-82 As the conceptual vision of narrative medicine becomes coherent, research agendas and action plans unfold. The hypotheses to be tested are provocative and wide ranging. It may be that the physician equipped with the narrative capacities to recognize the plight of the patient fully and to respond with reflective engagement can achieve more effective treatment than can the physician unequipped to do so. Medical educators may find that applicants already gifted with narrative skills are better able to develop into effective physicians than are students deficient in them. Programs have been under way for some time in incorporating narrative work into many aspects of medical education and practice. The teaching of literature in medical schools has become widely accepted as a primary means to teach about the patient’s experience and the physician’s interior development.83 ©2001 American Medical Association. All rights reserved. Downloaded From: http://jama.jamanetwork.com/ by a HealthPartners - Regions Hospital User on 03/24/2016 NARRATIVE MEDICINE Narrative writing by students and physicians has become a staple in many medical schools and hospitals to strengthen reflection, self-awareness, and the adoption of patients’ perspectives.84-87 The practice of bioethics has adopted narrative theory and methods to reach beyond a rule-based, legalistic enterprise toward an individualized and meaning-based practice.88,89 Certainly, more and more patients have insisted on achieving a narrative mastery over the events of illness, not only to unburden themselves of painful thoughts and feelings but, more fundamentally, to claim such events as parts, however unwelcome, of their lives.90,91 Adding to early evidence of the usefulness of narrative practices, rigorous ethnographic and outcomes studies using samples of adequate size and control have been undertaken to ascertain the influences on students, physicians, and patients of narrative practices.92,93 Along with such outcomes research are scholarly efforts to uncover the basic mechanisms, pathways, intermediaries, and consequences of narrative practices, supplying the “basic science” of theoretical foundations and conceptual frameworks for these new undertakings. CONCLUSION The description of Ms Lambert at the beginning of this article was written by her physician (the author) after a recent office visit and shown to her on the subsequent visit. As Ms Lambert read the words, she realized more clearly the anguish she had been enduring. Her sisters had dismissed her concerns, saying she was imagining things about Phillip, and that had added to her own suffering. She felt relieved that her physician seemed to understand her pain, and she told the physician what her sisters had said. “Can I show this to my sisters?” Ms Lambert asked her physician. “Then maybe they can help me.” This essay has outlined the emergence of narrative medicine, a medicine infused with respect for the narrative di- mensions of illness and caregiving. Through systematic and rigorous training in such narrative skills as close reading, reflective writing, and authentic discourse with patients, physicians and medical students can improve their care of individual patients, commitment to their own health and fulfillment, care of their colleagues, and continued fidelity to medicine’s ideals. By bridging the divides that separate the physician from the patient, the self, colleagues, and society, narrative medicine can help physicians offer accurate, engaged, authentic, and effective care of the sick. Funding/Support: This work was funded in part by grant support from the Fan Fox and Leslie R. Samuels Foundation, New York, NY; “The Parallel Chart: Developing Empathy, Reflection, and Clinical Courage in Physicians” (October 1999-December 2000, Columbia University Project CU51440001); and “The Parallel Chart: Method for Teaching Narrative Medicine” (March 2001-June 2003, Columbia University Project 51594901). Acknowledgment: I am indebted to Ronald Drusin, MD, and Julia Connelly, MD, for reviewing and commenting on earlier drafts of the manuscript. I am grateful to my patient, here called Ms Lambert, for her permission to publish her story. REFERENCES 1. Morris DM. Illness and Culture in the Postmodern Age. Berkeley: University of California Press; 1998. 2. Konner M. Medicine at the Crossroads: The Crisis in Health Care. New York, NY: Pantheon Books; 1993. 3. Charon R. The narrative road to empathy. In: Spiro H, Curnen MGM, Peschel E, St. James D, eds. Empathy and the Practice of Medicine: Beyond Pills and the Scalpel. New Haven, Conn: Yale University Press; 1993:147-159. 4. Charon R. Narrative medicine: form, function, and ethics. Ann Intern Med. 2001;134:83-87. 5. Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196:129-136. 6. Laine C, Davidoff F. Patient-centered medicine: a professional evolution. JAMA. 1996;275:152-156. 7. 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