DIGNITY: RITA CHARON, ETHICIST NARRATIVE MEDICINE

Rita Charon, MD, PhD (USA) , is Chair of Medical Humanities and Ethics at Columbia University. A general internist and literary scholar, she is the founder of the discipline of Narrative Medicine. With an MD from Harvard, PhD in English from Columbia, she conducts research on the impact of humanities in medicine and is the author or co-author of four books on narrative medicine.
I want to thank the Columbia Global Centers in Paris, Amman, Nairobi, and Istanbul for sponsoring this symposium and insisting that the pandemic is an international pandemic. The more we can remember that we are not isolated and not solving our own parochial problems, the more effective and just will be the outcomes of our actions.
Ms. Madé has just given us major testimony not only about the privacy and dignity of the patient’s body but also about the privacy and dignity of the other bodies in the room. I am very impressed with what she just did. Here is why. I am a general internist and a literary scholar. I study narratology—how stories are told and understood and received and what happens in the world by virtue of the accounts we give to one another. A group of humanities scholars and clinicians at Columbia University developed the field of narrative medicine in the early 2000s (37). We knew that the humanities, especially literary studies and creative arts, could make powerful contributions to health care practices and concepts not just through the content of great novels likeMagic Mountain and Frankenstein but by harnessing literary and aesthetic concepts of representation, close reading, intersubjectivity, temporality, and embodiment for use in the clinic. Our work over the years has demonstrated that narrative skills can improve clinical care in many ways, including expanding clinicians’ knowledge of individual patients, strengthening teamwork, and reducing burnout (38)(39)(40). It is through the many-focaled lenses of narrative medicine that I have approached this essay’s effort to reflect on issues of privacy and dignity in the time of Covid.
The impressive part of what Ms. Madé just did, speaking from a narrative medicine perspective, was to nest the clinical dilemma of the nurses and physicians within the more encompassing clinical dilemma of the patient, allowing her listeners or readers to consider the embodied landscape of care as a whole. She started with the privacy of patients’ bodies before and after death, outlining France’s policies of privacy and confidentiality accorded to patients and their surrogates. Then she seamlessly drew in the opposite face of privacy of the clinicians’ bodies—not that they are unduly exposed but that they are unduly concealed in their personal protective equipment to the point that patients and families cannot distinguish among their encapsulated bodies. Through that deft narrative turn, Ms. Madé encourages us to consider the patient and the clinician as a unit—one sick, perhaps dying, the other risking sickness, perhaps death in the effort to care for the patient. The fear for the clinicians’ own lives and the fear for their colleagues’ lives cannot be separated from their fear for the lives of their patients, leveling the typical hierarchy by the mournful, terrifying facts of this crisis.
We know that physicians in particular hold strict taboos regarding their physicality within their professional actions. Usually, the body of the physician does not enter the picture of medical practice. Touching of patients is strictly governed (although such rules do not prevent the occurrence of sexual assault on patients by their doctors). Grueling medical training drills the importance—and heroic implications—for doctors to do without sleep and food and ordinary physical self-care. It is not a surprise to learn that doctors are found to have greater levels of anxiety about death than non-doctors but find powerful ways to repress such fears (41). So Ms. Madé’s testimony gives us an important and rarely articulated aspect of not just the ethical dilemmas of this crisis but a profound paradox of health care in which some who work very closely with dying persons are perhaps ill-prepared to deal with their own and others’ mortality.
Doctors’ fear of death notwithstanding, Ms. Madé’s testimony emphasizes the collective nature of our ethical responses to this plague. Moral philosopher Charles Taylor situates his understanding of personhood within the collective: “One is a self only among other selves. A self can never be described without reference to those who surround it. . . . A self exists only within what I call ‘webs of interlocution”’(42). Framed by Taylor’s recognition of our webs of meaning-making, I will emphasize in the rest of this essay those relational, cultural sources of the moral compass that governs the actions of any one of us. Like literature itself with its invisible and necessary congress between writer and narrator, narrator and reader, and reader and character, our inner lives and our consequential outward actions are influenced by and opened up by our intersubjective contact with the other. With our patients and clinical colleagues, we are fellow mortals, siblings under the planetary and even cosmic horizons that locate us in time, space, and being.
Questions about the privacy of patients’ bodies are old, old questions. Read the Journal of the Plague Year of Defoe and Camus’s Dr. Rieux in La Peste again if you have not done so recently to see how these questions of privacy, ownership, and custody of patients’ bodies dead and alive have been with us in all the plagues of the 16th and 17th centuries and beyond (43)(44). Remember too, and this has been mentioned in earlier testimonies in this symposium, that the hospital is a strange insoluble mix of public and private. Illness itself is a subjective experience, a meaningful experience that happens within the context of an individual life as it is at the same time a public situation where some informal or professional group has to do the best they can to care for and protect others. The public functions, however, risk precluding attention to the individual’s subjectivity; as phenomenologist Hans-Georg Gadamer asked, “Can science be connected once again with our own lived experience, or must the experience of one’s own individuality be lost irrevocably in the context of modern data banks and new technology?” (45).
It was in the 18th and 19thcenturies that the hospital became, in the works of Foucault anyway, a place not where persons were cared for but the place where physicians and scientists were able to study and objectify their human bodies (46). Physician and philosopher Mark Sullivan observes that “[i]n the new secular hospital [of the 18th and 19th centuries] organized by disease categories, the patient’s body became the object of scientific study and the focus of clinical medical efforts. Patients with chronic illness that could not be treated successfully within the hospital or clinic were generally sent away” (47). The reductive efforts to study the heart, the lungs, the kidneys so as to learn and not necessarily to be with those who were suffering altered the nature of medicine indelibly toward a time when hospitals needed public policies to protect patients from medicine’s intrusions and instrumental uses of the bodies of others.
But it was not until 1914 when Benjamin Cardozo wrote his decision in Schloendorff v. Society of New York Hospital that we had a firm legal platform, at least in the US, to say the patient’s body belongs to the patient. The plaintiff had given permission for an examination under anesthesia, but while the patient was anesthetized, the surgeon removed a tumor from the abdomen. Cardozo’s judgment was very clear. If a surgeon were to operate on a patient without their consent, the surgeon would be liable to charges of criminal assault.
With that rather sordid history as a background to this questions of privacy and dignity of patient’s bodies in our hospitals, let me turn to the traditions and schools of thought that were not available to Defoe or Rieux in their prior very similar plagues and that now might help to guide us toward respectful and ethical care of patients in this time of Covid. Professor Bustan referred to the work of phenomenologist Emmanuel Levinas in the context of the subjectivities and intersubjectivities of clinical care. The phenomenological traditions within continental philosophy are poised to articulate the peculiar dilemmas of illness and embodiment—how individuals find themselves within the world through the sensations and affordances of the physical body and how one embodied person is recognized and called into being by the fact of another embodied person (48). The body is the avenue through which the self lives in the world. Without our bodies, we are not in the world. Through our perception, sensation, and motility, we are able to not just address but to come into contact and to confront the real, whatever the real might mean. Without the body, we would be left only with our own imaginary representations of what we might intimate is out there.
Situations of health care, especially the hospital during a time of plague, poignantly enact the dramas of the body and the self that Heidegger, Husserl, Merleau-Ponty, and their followers so deeply investigated. Such contemporary phenomenologists as Drew Leder and Havi Carel continue the work of phenomenology by examining questions of social justice—imprisonment and maltreatment of animals—and the plight of individual patients whose serious and sudden illnesses derail their on-going lives (49)(50).
When I discuss the body of the patient, I do not invoke the Cartesian assertion that one can think of one’s body as if disengaged from or outside of it but, in Gadamer’s words, of “the absolute inseparability of the living body and life itself” (45; p. 71). And so it is that I particularly appreciate Ms. Madé’s comments on dignity, coming from the perspective of the nurse, that the body of the clinician as well as the body of the patient is involved in these clinical questions. More than medicine, nursing has been influenced by and has been the source of care ethics and feminist ethics formulations that bear on our question. The ethics of care, as proposed by Carol Gilligan in the 1980s and continued by Nel Noddings and Joan Tronto, among many others since then, focus on the relationship aspects of care (51)(52)(53). From the perspectives of care ethics, clinicians must be present themselves in order for care to be ethically and clinically effective—present not just in their cognitive and diagnostic capacities but in their moral, values-based, and even physical incarnations in the orbit of the patient. Such an ethics is a highly “costly” personal one, shifting the notions of duty from disengagement to engagement. I believe this ethical perspective clarifies some aspects of the dilemma we are faced with here. As one follows the literature in the ethics of care and feminist bioethics, one sees expansion beyond its initial focus on the perspectives of women in health care toward nongendered formulations of relational moral visions, spreading from health care and education to intersectional, global, political, and economic issues (54).
At their cores, the feminist approaches in bioethics and care ethics formulations seat the personal commitment of the care-giver—family, teacher, health care provider, legislative representative, policy maker—to address both the impersonal and personal dimensions of the situation and its ethical calculus. The “address” is one-to-one, with the one who is cared for—in whatever situation—and the one giving the care as partners in the outcome. In our Covid setting, the patient’s body is in the clinician’s hands. The patient’s body has been entrusted to this clinician who is present in her own body, however protected or unprotected from the physical and existential contact she may be.
I conclude this essay by thinking back to our opening case, that of the cameras in the intensive care unit taking images from the bed of a dying patient to broadcast those images into the public media. However protected such photojournalism might be by France’s equivalent of the U.S. freedom of speech laws and however allowed such photographing may be by the consent of surrogates, it seems to me like a greedy gesture on the part of the media to take and display what they think will be most shocking and the most potentially “viral” of images. I wish the photographers were more skilled than that. I wish they could capture perhaps less violent and intrusive but perhaps more telling images. We all probably remember the Holocaust photographs of the pile of children’s shoes that most spoke to the horror of that genocide. So my closing request is a request for nuance instead of flamboyance, depth instead of shock. What we have to endure in the pandemic requires our capacity to see in great, great detail and delicacy all that unfolds, to not be catapulted to facile and false conclusions but to take the measure of the complexity of the time and the need for our utmost discretion in learning and teaching its lessons.