Patients Are Humans Too

Author(s): Keith Wailoo

Source: Daedalus , Summer 2022, Vol. 151, No. 3, The Humanities in American Life:
Transforming the Relationship with the Public (Summer 2022), pp. 194-205
Published by: The MIT Press on behalf of American Academy of Arts & Sciences

Stable URL: https://www.jstor.org/stable/10.2307/48681153

JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide
range of content in a trusted digital archive. We use information technology and tools to increase productivity and
facilitate new forms of scholarship. For more information about JSTOR, please contact support@jstor.org.

Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at
https://about.jstor.org/terms

American Academy of Arts & Sciences and The MIT Press are collaborating with JSTOR to digitize,
preserve and extend access to Daedalus

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Patients Are Humans Too:
The Emergence of Medical Humanities
Keith Wailoo

This essay describes the origins, growth, and transformation of the medical human-
ities over the past six decades, drawing on the insights of ethicists, physicians, histori-
ans, patients, activists, writers, and literature scholars who participated in building
the field. The essay traces how the original idea of “humanizing physicians” evolved
and how crises from death and dying, to AIDS and COVID-19, expanded human-
istic inquiry into health, illness, and the human condition. It examines how a wide
array of scholars, professional organizations, disciplinary approaches, academ-
ic units, and intellectual agendas came to define the vibrant field. This remarkable
growth offers a counterpoint to narratives of decline in the humanities. It is a story
of growing relevance shaped by tragedy, of innovative programs in medical schools
and on undergraduate campuses, and vital new configurations of ethics, literature,
the arts, and history that breathed new life into the study of health and medicine.

W
riting in 1982, philosopher Stephen Toulmin observed that the study
of ethics (which traditionally meant formal, theoretical moral phi-
losophy) had been reenergized and transformed by its engagement
with medicine. In “How Medicine Saved the Life of Ethics,” Toulmin explained
that the ethical dilemmas of recent medicine–from death and dying, to contra-
ception, and abortion–had catalyzed a resurgence in the once-moribund field of
philosophical inquiry. Two years later, physician Eric Cassell painted a broader
portrait of how problems of disease and health had nurtured humanities fields be-
yond bioethics. Celebrating “the place of humanities in medicine,” he wrote that
“the enormously increasing power of medicine to change individual lives . . . and
to profoundly influence social policy had all provided rich fare for philosophical,
historical, and literary examination, interpretation, and analysis.”1
In an era when health care had become powerful but also ethically challenged,
new trends in the humanistic analysis and critique of medicine flourished. For
many scholars drawn to the field, medicine and the humanities were entangled
in a perverse love-hate relationship in which literature, history, and philosophy
promised to soften medicine’s rough edges and revise its “present romance with
technology.”2 In a sense, the medical humanities sought to be a counterpoint to

© 2022 by Keith Wailoo

194 Published under a Creative Commons Attribution-
NonCommercial 4.0 International (CC BY-NC 4.0) license
https://doi.org/10.1162/DAED_a_01938
This content downloaded from
110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Keith Wailoo

technological hubris; it sought also to encourage physicians to have a deeper per-

sonal understanding of the impact of new technologies, new powers, and new
health care dilemmas on people’s lives. In the writings of Toulmin and Cassell, the
medical humanities and ethics harbored a redemptive, utilitarian idea: that broad
learning could nurture the soul of the doctor at a time when medicine, enraptured
by science, was losing touch with the patient.
This essay draws on the insights of the ethicists, physicians, historians, pa-
tients, activists, artists, writers, literature scholars, and others who participated
in the building of the medical humanities over the past six decades. The process
began as an effort to “humanize medicine,” but the agenda grew and transformed
remarkably over the years. The story they tell unfolds in three stages: the peri-
od from the early 1960s to the 1980s, in which developments centered in medi-
cal schools; the years of professional expansion in the 1980s and 1990s when new
journals, associations, and teaching initiatives took shape; and the particularly
stunning growth of medical humanities in undergraduate colleges in the 2000s,
in programs taking varied institutional forms. In what follows, I allow those who
participated in this transformation to describe the diversification of work done
under the heading of “medical humanities.” This essay also traces how the orig-
inal ideal of humanizing physicians evolved, while other goals such as exploring
the human condition became more salient and as recurring crises in medicine and
society catalyzed the fragmentation of the field.

T
he criticism articulated by Cassell and Toulmin–that medicine, in turn-
ing to science, was losing touch with patients–had been evident since the
late 1950s. Increasing medical specialization was said to push doctors to-
ward a study of disease mechanisms, and away from an understanding of illness.
There was also, for example, the problem of unethical human experimentation
in the post–World War II era: the revelation that leading researchers conducted
experiments such as testing drugs on vulnerable patients without their consent.
Such excesses spanned from the testing of polio vaccines on children in mental in-
stitutions in the 1950s to the revelation in the 1970s about the decades-long Tuske-
gee syphilis study, in which Black men with the disease were observed rather than
treated over four decades. The disclosures suggested a need for new regulations
of professional conduct. But they also suggested a need for deeper introspection
about virtue and the duties of caregiving.
As Cassell explained in the early 1980s, the events of the previous two decades
had catalyzed medical humanities: for “while medical science can abstract itself
and deal solely with body parts, doctors who take care of patients do not have that
luxury–they must work with people . . . [and are faced with] the fears, desires,
concerns, expectations, hopes, fantasies, and meaning that patients bring.” In
this telling, the scientific guidance of physicians would always be morally impov-

151 (3) Summer 2022 195

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
The Emergence of Medical Humanities

erished without a fuller understanding of illness, suffering, and health, realities

“better taught by literature and the other humanities.”3
Both Toulmin and Cassell dated the birth of this humanistic critique to the ear-
ly 1960s, when social movements and professional criticism produced curricular
change. Over the decade, increasing numbers of women and students from mi-
nority backgrounds entered medical schools. The pressure for medical human-
ities programs was “initiated primarily by students,” explained Cassell. Reject-
ing the narrowness and perceived irrelevance of scientific medical training, they
“were no longer content to be taught what their faculties believe important. It was
essential to the students that their classes be ‘relevant’ to the problems of poverty,
racial bias, and political ‘oppression.’”4
With health and health care in flux, the turmoil of the era made medical hu-
manities necessary for addressing concerns of the moment. The deinstitution-
alization of the mentally ill and their social integration provoked new questions
about the meaning of illness, stigma, and the role of psychiatry in society: was
it the case, as critics charged, that institutionalization was merely a scientized
form of social control?5 New legislation expanded health insurance to the elder-
ly. But why then did the American Medical Association fight so feverishly against
passage of Medicare, failing to stop it? Was this an example of the profession’s
commitment to economic interest and not, as they claimed, the well-being of pa-
tients? And when medical science failed in its quest to preserve life, what was the
role of the physician in death and dying?6 The subtitle of Elisabeth Kubler-Ross’s
On Death and Dying captured the era’s conceptual inversions, and its shift to more
patient-centered understandings: “What the dying have to teach doctors, nurs-
es, clergy, and their own families.” Worries over the failures of “the biomedical
model” ranged widely, gaining even greater force in early 1970s amid burgeoning
political, legal, social, and moral debates over reproductive rights, abortion, and
homosexuality. Trust in medical expertise was ebbing as core institutions were
buffeted by social pressures. In the early 1970s, for example, the American Psychi-
atric Association gathered to debate removing “homosexuality” from its standard
nomenclature of mental illnesses. Little wonder that medical ethics and human-
istic understandings of patients, disease, health, and society expanded in signifi-
cance in this tumultuous era.
The intense demands of the era made medical practice no longer “a field for
academic, theoretical, even mandarin investigation alone. . . . It had to be debated
in practical, concrete, even political terms,” explained Toulmin.7 From the stand-
point of the 1980s, Toulmin and Cassell saw medical humanities as a response to
the “demand for intelligent discussion of the ethical problems of medical practice
and research.”8 By the early 1980s, the majority of medical schools had developed
programs in the medical humanities, incorporating (in one way or another) the
study of literature, history, and ethics into the training of physicians to be at least

196 Dædalus, the Journal of the American Academy of Arts & Sciences

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Keith Wailoo

conversant with the issues swirling about the profession. Some schools had devel-
oped full-fledged departments.9 But what neither the philosopher Toulmin nor
the physician Cassell could see from the early 1980s was just how rich, diverse, and
varied the field would become in the following decades.

A
s Toulmin and Cassell were penning their thoughts in the early 1980s,
medical humanities were also taking shape in undergraduate curricu-
la. Between 1980 and 2000, the critical humanistic analysis of medicine
and health produced new scholarship in every field: in the arts, the social scienc-
es, and in literature, history, and philosophy. New crossdisciplinary departments
were devoted to the social relations of medicine and science. One such program,
the one in which I earned a PhD, had been created in 1962 as the “History and Phi-
losophy of Science,” and then changed its name to “History and Sociology of Sci-
ence” in 1970. The varied names suggest the multiplicity of lenses being brought
to bear on the undergraduate and graduate study of science, health, and their im-
plications for society.
In the 1980s, medical humanities shifted focus notably toward the patient’s ex-
perience and the human condition. AIDS, cancer, and other health struggles pro-
vided tragic catalysts for new works in literature, art, and history. The global AIDS
pandemic, for example, raised a host of new questions not only about viral ori-
gins and epidemiology, but also about condoms, sex practices, religious tolerance,
gay identity, and changing sexual politics, topics demanding integrated thinking
about the human condition across the sciences, public health, social sciences, and
humanities.
Where might one seek insight into this new health crisis? Was it perhaps Larry
Kramer’s 1985 autobiographical play, The Normal Heart, about enduring the early
years of AIDS prejudice, indifference, struggle, and fear in New York City? Or per-
haps the reflections of physician Abraham Verghese in My Own Country: A Doctor’s
Story of a Town and Its People in the Age of AIDS?10 Reviewing Verghese’s book in Lit-
erature and Medicine, Joseph Cady explained that AIDS literature had become vast
and had been produced mostly by people vulnerable to the disease. Verghese’s
contribution was different, telling his story as a foreign medical graduate in small
town Tennessee chronicling the social trauma: the “HIV-positive heterosexual
woman . . . infected by her bisexual husband, hemophiliacs with AIDS . . . and people
with transfusion AIDS (Will and Bess Johnson, who posed an extra level of chal-
lenge as well-to-do, ‘pillar of the community,’ fundamentalist Christians who in-
sist on keeping their infection secret).”11 The nation’s AIDS experience made clear
that to fully understand the unfolding health tragedy demanded creative story-
telling, narrative insight, introspection, and deep sensitivity to the complexity of
the human condition. Kramer and Verghese were only two among many medical
humanities ideals.

151 (3) Summer 2022 197

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
The Emergence of Medical Humanities

In medical education, new texts were pushing the field forward; new lines of
inquiry and pedagogy were opening. When I taught in the medical school at the
University of North Carolina at Chapel Hill in the 1990s (in the department of so-
cial medicine), humanizing the physician remained the central driving conceit.
The redemptive ideal generated a new textbook in 1997, the Social Medicine Reader,
a collection of fiction, essays, poetry, case studies, medical reports, and person-
al narratives by patients and doctors compiled for teaching. The Reader aimed to
“contribute to an understanding of how medicine and medical practice is pro-
foundly influenced by social, cultural, political, and economic forces.” Elsewhere,
physician Rita Charon and literary scholar/ethicist Martha Montello were also
compiling essays for an edited collection for a new enterprise labeled “narrative
medicine.” As they observed, storytelling underpinned all thoughtful caregiving:
“How the patient tells of illness, how the doctor or ethicist represents it in words,
who listens as the intern presents at rounds, what the audience is being moved
to feel or think–all these narrative dimensions of health care are of profound
and defining importance in ethics and patient care.”12 Such developments trans-
formed medical education in the 1990s. “By 2004,” wrote medical historian Em-
ily Abel and sociologist Saskia Subramanian, “88 of the 125 medical schools sur-
veyed by the American Association of Medical Colleges offered classes in the hu-
man dimensions of care, including treating patients as whole people, respecting
their cultural values, and responding empathetically to their pain and suffering.”
However, these courses were only “a tiny fraction of medical-school curricula.”13
Driven by such initiatives, the 1980s and 1990s would be an era of acquisitions,
new ventures, and mergers in the medical humanities: new journals established,
professional associations combined, and novel academic collaborations explored.
In 1980, for example, the Journal of Medical Humanities was founded, followed two
years later by Literature and Medicine. In 1998, three organizations–each repre-
senting different facets of the emerging field–merged to produce the American
Society of Bioethics and the Humanities (ASBH). The oldest of the three, dating
to 1969, was the Society for Health and Human Values (SHHV). The Society for
Bioethics Consultation had been founded in the mid-1980s, while the American
Association for Bioethics had been established only four years before, in 1994. As
the ASBH’s founding president, bioethicist Loretta Kopelman, reflected, the term
“humanities” was a reassuring rubric particularly for the non-ethicists, a group
that encompasses a vast array of disciplines and specialties:
SHHV had members from many fields including health professionals, law, religious
studies, literature, pastoral care, social science, history, visual arts and student groups.
Some worried that this diversity of approaches would not be valued in the same way
in a new organization. For many of those fearing such marginalization, “humanities”
came to stand for inclusiveness and “bioethics” for the sort of rigor in addressing

198 Dædalus, the Journal of the American Academy of Arts & Sciences

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Keith Wailoo

problems such as are found in publications in philosophy, law, social science or aca-
demic medicine. The title “American Society of Bioethics and Humanities” reflected
that we wanted all groups to thrive in ASBH.14

Many of these new ventures proved to be durable, creating the institutional

supports, professional associations, journals, texts, and teaching practices nec-
essary to sustain the field. Others, such as the Society for the Arts in Healthcare
founded in 1991, were short-lived and difficult to sustain.
By 2000, divergences in the medical humanities agenda appeared, inevitably
so. In medical schools, the humanities presence remained small and there would
be unavoidable tensions as humanists worked within the overwhelming science-
based curriculum. Reflecting on the challenge of balancing history, theory, and
practice in medical education, bioethicist Thomas McElhinney observed that
the changes in medicine caused by scientific discovery and technological develop-
ments, on the one hand, and social and political transformations, on the other, in-
creasingly highlighted the impossibility of a complete medical education structured
only on theory and practice (i.e., basic science and clinical training).15

Faced with the demands of science and clinical education, students’ responses
to the little humanities they encountered varied, said McElhinney: “the human-
ities will be a distraction to some but an oasis in an otherwise arid environment
for others.”16 The serious and profound need for humanistic insight remained ob-
vious even if curriculum space was limited. By contrast, however, undergraduate
college education in the 2000s provided fertile soil for program building and ex-
pansive institutional development.

S
ince 2000, “health humanities” in undergraduate education has expanded as
a vibrant complement to the “medical humanities” in medical schools, a de-
velopment that moved the field significantly beyond its narrow ideals of hu-
manizing physicians. Between 2000 and 2010, the number of undergraduate bac-
calaureate programs in the health humanities jumped from eight to over forty, fol-
lowed by another stunning increase in the next decade. By 2021, the number of such
programs had reached 119, an eightfold increase since 2000 as one recent survey
by humanities and bioethics scholars Erin Gentry Lamb, Sarah Berry, and Therese
Jones observed. At the same time that a crisis in the humanities brewed, the once
niche field was flourishing. As Lamb, Berry, and Jones noted, “at a time when Lib-
eral Arts education, and humanities programs in particular, are under fire in many
public quarters,” health humanities programs were serving a growing, keenly inter-
ested population of students (many of whom hoped to enter health care careers).
The utilitarian impulse to produce better caregivers persisted, but the locus of
humanistic health education was shifting to undergraduate curricula. And in this

151 (3) Summer 2022 199

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
The Emergence of Medical Humanities

context, the critical sensibilities of the medical humanities sharpened. Colleges

across the nation discovered that these years were “an ideal time for students to
develop skills valuable . . . to providing humanistic health care across a wide range
of health care fields.” Reaching younger students prior to entering health careers
cultivated “habits of mind that prepare students for critical and creative think-
ing, identification of internal biases, and ethical reasoning in decision-making
processes–all of which are critical skills for participating in the complex sys-
tem of U.S. healthcare.”17 The model gained traction, drawing together students
from across disciplines and a range of health-oriented humanities scholars in new
teaching and research initiatives.
Commenting on the diverse expansion of such programs in 2009, historian
Edward Ayers observed that “we need to understand the many contexts in which
the humanities live. They live in departments and disciplines, of course; but they
also live in new places, in new forms, and in new combinations.”18 Medical hu-
manities was one such novel combination. Drawing on cultural studies, wom-
en’s studies, disability studies, and other burgeoning fields, programs of medi-
cal humanities defined a “rapidly growing field, celebrating the ability of the hu-
manities, as one program put it, to provide ‘insight into the human condition,
suffering, personhood, our responsibility to each other.’”19 Medical humanities
became, for many commenters like Ayers, a leading example of the thriving hu-
manities, a vibrant counterpoint to widespread narratives of decline.
That same year in an astute editorial in Medical Humanities, physician Audrey
Shafer acknowledged the diverse field was showing new academic fracture lines.
Not only did institutional and pedagogical goals differ, but gaps had opened be-
tween medical humanists who worked directly with patients or in health care set-
tings and those who worked in other educational contexts. Collaborations suf-
fered because “for instance, a performing arts department will have different the-
oretical underpinnings, methodologies, scholarly activities and products from a
philosophy department.”20 Medical humanities was an intellectual hodge-podge,
in Shafer’s view, suffering from an identity crisis. Yet despite tensions among
scholars with different qualifications, degrees, and agendas, the enterprise re-
mained vibrant with new “demarcations, dilemmas, and delights.” For Shafer,
the struggle to hold the field together was itself productive, for “when medical
humanities ceases to struggle with what it encompasses . . . then it will cease to be
medical humanities.”21
Many program builders in undergraduate settings did not share Shafer’s wor-
ry about the field’s “identity and boundary bumping,” however. “Health hu-
manities” and “medical humanities” proved to be popular, versatile, and decid-
edly flexible rubrics for program building in undergraduate contexts. Programs
emerged under a growing array of headings: “History, Health, and Humanities,”
“Health and Society,” and “Medicine, Science, and the Humanities.”22 If some

200 Dædalus, the Journal of the American Academy of Arts & Sciences

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Keith Wailoo

embraced narrative ethics and centered the study of literature while others fore-
grounded history or ethics, this diversity reflected the robust range of what med-
ical humanities had become. The goal remained broad, cross-disciplinary edu-
cation about the human condition, and deep introspection connecting scholars
across fields who were drawn together in teaching and researching the challenges
of health and healing.
The agenda of medical humanities had built over time, with no single disci-
pline claiming exclusive ownership over the enterprise. Assessing the field, lit-
erature scholar Sari Altschuler pointed forward in the conclusion to her 2018
book, The Medical Imagination. In her view, the humanities agenda in medical
schools had made modest gains, confining itself to a limited agenda by “mostly
aiming at improving physician empathy rather than at shaping and expanding
medicine’s ways of knowing.”23 Meanwhile, programs run by humanists in un-
dergraduate settings remained too heavily focused on the utilitarian task of pre-
paring aspiring health care workers. Both approaches sought “to bring a sense
of the human back to medicine that risked being too governed by dispassionate
science, routinized procedure, and market logic.”24 These foundational func-
tions of the humanities in medicine (its redemptive capacity for humanizing
caregivers and seeing the humanity of patients) had not changed. If anything,
they had expanded remarkably in reach and scope, finding new audiences, and
developing in new venues.
With this expansion, scholars in a field that had begun modestly (in hopes of
humanizing physicians and exploring the human condition) now confidently assert-
ed that the very habits of analysis in humanistic inquiry exemplified, in them-
selves, important “ways of knowing” about health. To Altschuler, “the number
and breadth of medical and health humanities programs offer a terrific oppor-
tunity” to move beyond empathy building in medicine, and to embrace a bolder
vision: “the recognition that humanists have an important and distinct set of
tools for knowing the world, as do health professionals.”25 Building on the ener-
getic developments of the past decades, she called on humanists to engage with
medical science from a new standpoint–to find common ground with medical
educators by embracing the language of “competencies”: practical skill develop-
ment as the bedrock of medical training. By now, these skills could be clearly artic-
ulated as “humanistic competencies–which include narrative, attention, obser-
vation, historical perspective, ethics, judgement, performance, and creativity.”26
The list offered a lovely shorthand for the approaches, methods, and practices en-
compassed within the health humanities. These competencies also highlighted
the fraught challenge ahead; the building of medical humanities would involve
ceaseless struggle over boundaries and demarcations, even as its core commit-
ment remained restoring humanistic understanding to the vast biomedical and
health enterprise.

151 (3) Summer 2022 201

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
The Emergence of Medical Humanities

I
n the end, the remarkable growth of the health humanities over the past six
decades is a story of tragic relevance, driven by the awareness not that medi-
cine had “saved the life of ethics” as Toulmin had noted, but rather by recog-
nition that new configurations of ethics, literature, the arts, and history were vital
for breathing life into medicine.
As the medical humanities have widened their reach, one theme has persist-
ed from the early years: professional and human crisis has spawned the search
for meaning and introspection about life, illness, recovery, human suffering, the
care of the body and spirit, and death. Medicine’s social dilemmas, its profession-
al controversies, human health crises, social tensions over topics from AIDS to
abortion and genetics, as well as the profession’s very identity and its claim to au-
thority have catalyzed and fed a growing demand for answers about meaning. The
recurring crisis has generated a style of humanistic insight that has flourished not
only within traditional disciplines but also in the interstices.
The flourishing of medical humanities is a story of shifting energies: the emer-
gence of new lines of inquiry, new institutional homes, and novel journals and
professional associations. As the field has grown, its questions about illness, dis-
ease, and the pursuit of health have become more prominent across the academy
and beyond its boundaries. The work has adapted to new trends in health move-
ments, disability studies and activism, and questions of race and gender in rela-
tion to health. Even as new programs have developed, the work of health human-
ities has become ever more salient in the disciplines of history, literature, the arts,
and in philosophy and ethics.
This expanding humanist venture–spanning from undergraduate and gradu-
ate teaching and research to broad public engagements–refutes the narrative of
a “humanities in decline.” Redemption and humanization of the practitioner re-
main goals, as does the deep appreciation of suffering, recovery, and the illness
experience. But the past decades have seen a wider critique: an insistence that the
tools of the medical humanities are not merely restorative gap-fillers for what is
lacking in scientific and technological insight, but that their discernment about
the self and identity, suffering and illness are the primary lenses for understand-
ing essential features of human experience, health, and society. The medical hu-
manities provide, then, the means by which we understand the complex problem
of how humans respond to illness, and how humans assess the role of science and
medicine in the enterprise of healing.
In the same way that the human tragedy of AIDS confirmed the relevance of
medical humanities in the 1980s and 1990s, today’s global coronavirus pandem-
ic (and its underlying issues of disparate suffering, loss, blame, conflicted belief,
social inequality, misinformation, and varied cultural responses) catalyzes yet
another wave of interest in health humanities. And few of COVID’s challenging
questions revolve around doctoring or patients alone; in COVID, the health and

202 Dædalus, the Journal of the American Academy of Arts & Sciences

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Keith Wailoo

well-being of a contentious and fractured public raised vexing questions well suit-
ed for medical humanists.
As we weather recurring waves of COVID, it has become commonplace for me-
dia to turn to medical humanities scholars for insight and guidance. What could
literature or history teach us about the social responses to the current pandemic?
asked National Public Radio. Could the history of past pandemics provide insight
into the current crisis, or serve as guides for the building of effective social re-
sponses and healthier, more equitable societies? To answer such questions, public
media has sought answers from scholars like French professor Alice Kaplan, who
was busily writing a new introduction to Camus’s The Plague. In early 2020 during
the first wave of COVID, sales of the book skyrocketed in Europe. “People are say-
ing in the French press, what do you absolutely need to read in this time? You need
to read The Plague,” Kaplan explained. “Almost as though this novel were a vac-
cine–not just a novel that can help us think about what we are experiencing, but
something that can help heal us.”27
The medical humanities began in crises and critiques of medicine, and crisis
continued to make the health humanities vital, timely, and necessary. To be sure,
the utilitarian ideals remained focused on creating well-rounded medical practi-
tioners. But the field now encompasses a grander and more widely institutional-
ized, and still richly debated, promise of healing and restoration through litera-
ture, the arts, history, and ethics.28 So while it is true that medicine “saved the life
of ethics,” it is also the case that over these decades, the medical humanities has
breathed new life into the humanities while also offering society a kind of heal-
ing that medicine itself cannot provide. This remarkable growth offers a counter-
point to narratives of decline in the humanities. It is a story of growing relevance
shaped by tragedy, of innovative programs in medical schools and on undergrad-
uate campuses, and vital new configurations of ethics, literature, the arts, and his-
tory that have profoundly rejuvenated the study of health and medicine.

about the author

Keith Wailoo, a Fellow of the American Academy since 2021, is the Henry Put-
nam University Professor of History and Public Affairs at Princeton University. He
is the author of Pushing Cool: Big Tobacco, Racial Marketing, and the Untold Story of the
Menthol Cigarette (2021), Pain: A Political History (2015), and How Cancer Crossed the Col-
or Line (2011).

151 (3) Summer 2022 203

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
The Emergence of Medical Humanities

endnotes
1 Daniel Callahan, Arthur Caplan, and Bruce Jennings, “Preface” to Eric Cassell, The Place
of the Humanities in Medicine (Hastings-on-Hudson, N.Y.: The Hastings Center, 1984), 5.
2 Cassell, The Place of the Humanities in Medicine, 6.
3 Ibid., 47.
4 Ibid., 13.
5 Thomas Szasz, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct (New
York: Harper Collins, 1961).
6 Elisabeth Kubler-Ross, On Death and Dying: What the Dying Have to Teach Doctors, Nurses,
Clergy, and Their Own Families (New York: Scribner, 1969).
7 Stephen Toulmin, “How Medicine Saved the Life of Ethics,” Perspectives in Biology and
Medicine 25 (4) (1982): 749.
8 Ibid.
9 Cassell listed the four as Pennsylvania State, Wright State, Southern Illinois, and Univer-
sity of Nebraska. Cassell, The Place of the Humanities in Medicine, 12.
10 Larry Kramer, The Normal Heart: A Play (New York: Plume, 1985); and Abraham Verghese,
My Own Country: A Doctor’s Story of a Town and Its People in the Age of AIDS (New York: Vin-
tage, 1994).
11 Joseph Cady, “My Own Country: A Doctor’s Story of a Town and Its People in the Age of AIDS (re-
view),” Literature and Medicine 15 (2) (1996): 278–282.
12 Rita Charon and Martha Montello, “Memory and Anticipation: The Practice of Narra-
tive Ethics,” in Stories Matter: The Role of Narrative in Medical Ethics, ed. Rita Charon and
Martha Montello (New York: Routledge, 2002).
13 Emily K. Abel and Saskia K. Subramanian, After the Cure: The Untold Stories of Breast Cancer
Survivors (New York: NYU Press, 2008), 141.
14 Loretta M. Kopelman, “1997: The Birth of ASBH in Pictures and Commentaries,” Ameri-
can Society of Bioethics and Humanities, https://asbh.org/uploads/FINAL_1997-The_
Birth_of_ASBH.pdf.
15 Thomas K. McElhinney, “Reflections on the Humanities and Medical Education: Bal-
ancing History, Theory, and Practice,” in The Health Care Professional as Friend and Healer:
Building on the Work of Edmund Pellgrino, ed. David C. Thomasma and Judith Lee Kissell
(Washington, D.C.: Georgetown University Press, 2000), 271.
16 Ibid., 289.
17 Erin Gentry Lamb, Sarah Berry, and Therese Jones, “Health Humanities Baccalaureate
Programs in the United States and Canada” (Cleveland: Case Western Reserve Univer-
sity, 2021), 5, https://case.edu/medicine/bioethics/education/health-humanities.
18 Edward L. Ayers, “Where the Humanities Live,” Dædalus 138 (1) (Winter 2009): 24–34.
19 Ibid., 32.
20 Audrey Shafer, “Medical Humanities: Demarcations, Dilemmas, and Delights,” Medical
Humanities 35 (1) (2009): 3–4.
21 Ibid., 4.

204 Dædalus, the Journal of the American Academy of Arts & Sciences

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms
 Keith Wailoo

22 Lamb et al., “Health Humanities Baccalaureate Programs in the United States and
Canada,” 10–12.
23 Sari Altschuler, “Humanistic Inquiry in Medicine, Then and Now,” in The Medical Imagi-
nation: Literature and Health in the Early United States (Philadelphia: University of Pennsyl-
vania Press, 2018), 198.
24 Ibid., 198.
25 Ibid., 199.
26 Ibid., 200.
27 Melissa Block, “‘A Matter of Common Decency’: What Literature Can Teach Us
about Epidemics,” National Public Radio, April 1, 2020, https://www.npr.org/2020
/04/01/822579660/a-matter-of-common-decency-what-literature-can-teach-us-about
-epidemics; and Audie Cornish, “How Do Pandemics Change Societies? A Historian
Weighs In,” National Public Radio, March 11, 2021, https://www.npr.org/2021/03/11
/976166829/how-do-pandemics-change-societies-a-historian-weighs-in.
28 E. D. Pellegrino, “Medical Humanism: The Liberal Arts and the Humanities,” Review of
Allied Health Education 4 (1981): 1–15; and E. D. Pellegrino, “The Humanities in Medical
Education: Entering the Post-Evangelical Era,” Theoretical Medicine 5 (1984): 253–266.

151 (3) Summer 2022 205

This content downloaded from

110.54.205.209 on Wed, 13 Mar 2024 08:07:41 +00:00
All use subject to https://about.jstor.org/terms