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.