CHAPTER 34
Faye Reiff-Pasarew
Abstract
This chapter discusses the historical origins, modern development, and current state of the Medical Humanities. It explains how the Medical Humanities create meaning and connection for providers, and the effect on patient experience and provider wellness. Other uses of the Medical Humanities will be presented, such as in medical and allied health professions education and training, as well as directly with patients. The chapter will review the state of the literature with particular attention to the quality level of the data. It concludes with a discussion of present debates and future directions for the field.
Key Words: Medical Humanities, Humanism, Interdisciplinary, Art, Burnout, Wellness, Empathy, Communication, Narrative medicine
Twin berries on one stem, grievous damage has been done to both in regarding the Humanities and Science in any other light than complemental.
—Sir William Osler
We were at a standoff. My patient was a young African-American man with sickle cell disease. I was concerned about escalating doses of opiate pain medication. He eyed me with suspicion. I was not relieving his pain. I was not believing his pain. Caring for a large population of patients with sickle cell disease in our hospital, many providers had similar experiences. These patients, sometimes called “sicklers”—a disrespectful name, though sometimes re-appropriated by patients—were mostly African-American, the providers were mostly not. This interaction would likely have ended there, had I not recently attended an event involving the sickle cell community. Through narrative, musical performance, and history, I’d learned about the history of sickle cell disease—the excruciating pain and premature death of those whose illness was denied by the medical community, the limited funding and support, the discrimination faced. Studies show that African-Americans receive less pain medication than whites (Hoffman, 2016) in general, and those called “sicklers” in particular (Glassberg, 2013). Back in the hospital room with my patient, I realized that I had to acknowledge his mistrust of the medical community, his mistrust of me. That mistrust was legitimate. While I might have learned this history from a textbook, it would not have had the emotional resonance provoked by artistic expression and the personal human narrative. Acknowledging my patient’s perspective and my implicit bias did not eliminate the difficulty in caring for him, but exposure to the humanistic context of this disease redirected my feelings of frustration and strengthened my resolve to provide quality empathetic care.
Introduction and Disambiguation
This chapter discusses the historical origins, modern development, and current state of the medical humanities. It explains how the medical humanities create meaning and connection for providers, and how that impacts patient experience and provider wellness. Other uses of the medical humanities will be presented with a review of the state of the literature, as well as present debates and future directions.
The medical humanities are sometimes perceived as “soft” in contrast to the “hard” biologic sciences. The irony of this view is that any provider will tell you that the challenges involved in caring for patients from a humanistic perspective are inevitably more difficult than the scientific questions of what to treat and how—though, in truth, the language used to describe the medical humanities has been vague, leading to a general misunderstandings of the field. To clarify, the “medical humanities” are an interdisciplinary approach drawing upon the fine arts, humanities, and social sciences to better understand and process the experience of health and illness, involving providers, patients, caregivers, or the community at large. While “medical humanities” is the most commonly used term, some argue for “health humanities” as more inclusive of those who are not doctors, such as nurses, pharmacists, and the allied health professions (Jones, 2017).
In contrast, “humanism in medicine” refers to a holistic approach to caring for patients, rooted in respect for individual humanity. The terms are linked in that one way to foster humanism in practice is through the use of the medical humanities.
Burnout is a long-term stress reaction characterized by depersonalization, including cynical or negative attitudes toward patients, emotional exhaustion, a feeling of decreased personal achievement, and a lack of empathy for patients (Physician Burnout, https://edhub.ama-assn.org/steps-forward/module/2702509). Burnout has become a major buzzword in the medical community, as it is now at crisis levels among providers (Physician Burnout Report, http://www.massmed.org/News-and-Publications/MMS-News-Releases/Physician-Burnout-Report-2018/). In contrast, “wellness” has emerged as a popular term to describe providers who not only are not burned out, but also derive meaning, connection, and well-being from their work.
History
Prior to the emergence of the modern biomedical model, medical practitioners extolled the virtue of a humanistic approach. To Hippocrates, “It is more important to know what sort of person has a disease than to know what sort of disease a person has.” Prior to the twentieth century, Western higher education was predominantly humanities based. Medical training was split between academic physicians, who had a broad humanities-based background but had little patient interaction and no standard requirements, and surgeons, who were trained via apprenticeships and were regulated by guilds (Custers, 2018).
The twentieth century saw the inclusion of the natural sciences in higher education alongside the humanities, the blossoming of the social sciences, and increasing specialization and credentialism, as each field of study developed their own pedagogy and academic training requirements. The Flexner report of 1910 (Duffy, 2011) advocated for reforms in medical education, leading to a standardized medical education structure. In the latter half of the twentieth century and the early twenty-first, the “STEM” (science, technology, engineering, and mathematics) fields overtook the humanities in prestige, funding, and professional remuneration.
Though the past century has seen incredible advances in the scientific understanding of health and illness, they have been accompanied by disruption. Discontinuity of care, sub-specialization, throughput demands, algorithmic care, billing and documentation requirements, and rapidly changing technologies have led to a decentralization of the provider–patient relationship. This has led to increasing provider burnout as well as patient dissatisfaction. While many of these changes in medicine have greatly improved healthcare delivery, they also mean that healthcare institutions must be more thoughtful and deliberate in fostering connection between providers and patients. There has been a movement to reintegrate interdisciplinary and humanities-based study in order to repair this relationship, as well as to reclaim the benefits of interdisciplinary study (Skorton, 2018).
The Present State of Medical Humanities
The term medical humanities first emerged in the 1960s, and programs have since proliferated. In 2018, 70 percent of medical schools included required medical humanities coursework, with 80 percent offering medical humanities electives (Klugman, 2017). There are also programs outside of medical schools, such as the Narrative Medicine program at Columbia University (https://www.narrativemedicine.org/about/), centers and publications affiliated with medical schools, such as the Alan Alda Center at Stony Brook University (https://www.aldacenter.org/) and the Bellevue Literary Review at New York University (https://blreview.org), nonprofit organizations such as the New York Academy of Medicine (https://nyam.org/), peer-reviewed journals such as Medical Humanities and Journal of Medical Humanities, and conferences worldwide. In 2018, the National Academies of Science, Engineering and Medicine called for the integration of the humanities and arts with the STEM fields (Skorton, 2018). Interest in the medical humanities has grown internationally as well (Song, 2017).
The medical humanities are also growing outside of the medical establishment. Patient-directed programs such as “Dance for Parkinson’s” (https://danceforparkinsons.org/) and graphic medicine (www.graphicmedicine.org) (the use of comics to tell personal stories about disease and health) are two examples among many. Podcasts such as Sawbones (https://www.maximumfun.org/shows/sawbones) explore the history of medicine for a lay audience.
“Narrative medicine” is one academic pedagogy under the larger umbrella of the medical humanities. Developed by Rita Charon at Columbia, it uses narrative to understand the experience of illness and caregiving (www.narrativemedicine.org) (Charon, 2001). While Columbia is the only master’s degree-granting program, the study of narrative medicine based on Charon’s work is now taught throughout the world.
Goals and Methods of Medical Humanities Interventions
The goals of the medical humanities are broad, and have been criticized as vague and ambiguous (Bleakley, 2015). In response to critics, there is increasing interest in delineating specific goals and studying impact. Inherent in the field is a tension between pragmatists, who favor simple discrete interventions that lend themselves to quantitative measures, as they provide valuable evidence for their utility and support advocacy for funding and inclusion in medical curricula, and idealists, who worry that this is reductionist and argue for a more idealistic engagement with narrative and interdisciplinary humanities-based study (Garden, 2008, https://josephensign.com/2014/07/16/the-problems-with-narrative-medicine/).
Within medical (and allied health professions) education and professional development, the medical humanities have a number of goals, such as fostering meaning and connection between providers and patients, developing empathy, skill-building in observation, listening, and communication, encouraging self-reflection, increasing professionalism, and countering burnout.
For interventions aimed at patients, goals frequently include improving patient satisfaction, quality of life, and the reduction of pain and anxiety. Medical humanities interventions have also been used in quality improvement in healthcare delivery. More recently, medical humanities interventions have targeted objective biologic outcomes. Certain goals, such as creativity in diagnosis and treatment, or a “humanistic approach” to patient care, are often discussed as overarching goals, but are difficult to measure.
If its goals are diverse, the methods are even more heterogeneous, involving approaches drawn from the social sciences, the visual and performing arts, as well as practices such as mindfulness and reflective writing.
Evidence for the Medical Humanities
Until recently, the majority of publications on the medical humanities were not true studies. Position papers with titles like “insights” and “approaches” abounded, along with theories, critiques, program descriptions, opinion pieces, and phenomenologic treatises. Many “studies” evaluated only acceptability according to feedback surveys. A prior review (Ousager, 2010) found a dearth of well-designed studies measuring impact. Many of the studies that existed were compromised by low statistical power, lack of randomization, selection bias, and self-report as a metric.
However, recent years have seen an increase in well-designed studies that measure the impact of medical humanities programs. Due to limited funding for research, the studies inevitably have small sample sizes and are often limited in follow-up time. Many still rely on self-reported outcomes. However, there are now a significant number of quantitative controlled trials and well-designed qualitative studies with demonstrable outcomes.
Evidence for the Medical Humanities in Medical Education and Professional Development
Exposure to the humanities starts prior to medical training. Majoring in the humanities or social sciences as an undergraduate correlates with improved CIS scores (communication and interpersonal skills)—one of the grading elements of the USMLE (United States Medical Licensing Exam), with no difference in the written test of clinical knowledge between humanities and natural science majors (https://www.aamc.org/system/files/reports/1/factstablea17.pdf). A study of nearly 750 medical students demonstrated a correlation between exposure to the humanities and empathy, tolerance for ambiguity, as well as an inverse relationship to burnout (Mangione, 2018).
At the Icahn School of Medicine at Mount Sinai, humanities majors accepted into medical school without the traditional pre-medical requirements were found to be just as successful as their peers in their grades and graduation distinctions. They performed slightly lower on the USMLE Step 1 (a predominantly basic science-based, nonclinical test), though they performed better in psychiatry and were more likely to pursue careers in primary care and psychiatry, two fields in which the United States needs more physicians (Muller, 2010).
At Harvard Medical School, students were randomized into the New Pathways program, which emphasized social and behavioral sciences with an express interest in humanism in medicine (Tosteson, 1990). Students were followed for nearly ten years after graduation and self-reported greater confidence in practicing humanistic medicine and managing patients with psychosocial issues. They were more than twice as likely to choose primary care or psychiatry (Peters, 2000).
Using visual arts training to improve observation skills has gained popularity, with programs present in at least seventy medical school programs internationally (Mukunda, 2019). These programs often involve partnerships with local museums and garner significant popular interest (https://www.forbes.com/sites/robertglatter/2013/10/20/can-studying-art-help-medical-students-become-better-doctors/#28459f84cdbd; https://www.nytimes.com/2016/12/22/well/live/what-doctors-can-learn-from-looking-at-art.html). A 2018 review demonstrated qualitative and quantitative improvement in skills such as reflection, observation, and tolerance of ambiguity (Mukunda, 2019). Three of these studies—at Yale, Harvard, and the University of Pennsylvania—were randomized trials (Dolev, 2001; Naghshineh, 2008; Gurwin, 2018) that used blind evaluations of observation skills tests. A study at Columbia and Cornell used pre- and post-testing with validated scales to show improvement in reflection, tolerance of ambiguity, and awareness of personal bias (Gowda, 2018).
Another goal of medical humanities programs is deepening the provider–patient relationship via improved communication skills and empathy. In a study from Taiwan, medical students randomly selected to take a narrative medicine course performed better on the communication skills section of the OSCE (objective, structured, clinical examination) (Tsai, 2012). At Columbia University, medical students learning to counsel pregnant women randomized to take a narrative medicine class also scored significantly higher on the OSCEs (Rivlin, 2019). At Washington State University, researchers used the Jefferson Scale of Empathy (JSE), a validated tool, to demonstrate increased empathy among students who took humanities courses compared to those who took non-humanities electives (Graham, 2016). When taken by medical students, the JSE has been shown to correlate with third-party assessments of students’ empathic behaviors (Hojat, 2005).
Another popular approach in teaching communication and empathy to medical students is using theater skills. A study from New Zealand examined the impact of a workshop taught by an actor, which included training on body language and interpersonal skills. The intervention group demonstrated improved clinical skills on the OSCE and increased empathy on the JSE compared to the controls (Lim, 2011).
Beyond medical school, an interdisciplinary program involving mindfulness, narrative, and self-reflection, among seventy primary care doctors demonstrated increased levels of mindfulness, well-being, emotional stability, mood, patient-centeredness, and empathy fifteen months post-intervention (Krasner, 2009). Staff physicians at the Cleveland clinic were randomized to participate in a faculty development program introducing narrative medicine and reflective writing. The intervention group demonstrated increased empathy as measured by the JSE (Misra-Hebert, 2012).
While most studies focus on medical students or physicians, a large randomized controlled trial of a narrative medicine intervention with nursing students in northeast China demonstrated increased empathy on the JSE. The study employed two control groups, one of which received non-narrative medicine-related education and one that received education on the theory of narrative medicine only. The intervention group that underwent the full narrative medicine program had significantly higher scores in empathy compared to both control groups, suggesting that the process of practicing narrative medicine is more than just learning the theory behind it (Yang, 2018).
A large study in Taiwan was unique in that it evaluated a competition involving narrative medicine and performance with physicians, traditional Chinese physicians, dentists, nurses, pharmacists, medical technologists, physical therapists, respiratory therapists, and nutritionists. The investigators demonstrated increased empathy scores on the JSE post-intervention that were sustained up to one and a half years (Chen, 2017).
A final goal is alternately referred to as metacognition, reflection, or introspection. Though many argue that a provider’s ability to be thoughtful, humanistic, emotionally healthy, and oriented toward self-improvement requires this type of self-reflection, figuring out how to teach this skill is challenging. The medical humanities are frequently employed in this endeavor through reflective writing exercises. What makes this skill particularly hard to teach is the difficulty in gauging success. Looking for long-term outcomes associated with improved reflection is expensive, time-consuming, and complicated by confounding factors. Many methods have been used to assess the quality of reflection in reflective writing (Niemi, 1997) (Moon, 2013; Boud, 2001; Regmi, 2013; Wald, 2012). Though many bristle at the idea of “grading” reflective writing, the goal is not to evaluate the work in order to grade students, but rather to evaluate whether programs are truly able to create deeply reflective experiences. These models have been used to tie the quality of reflection to outcomes such as professionalism (Hoffman, 2016). This bolsters the argument not only for incorporating reflective writing into education and training across the allied health fields, but also for ensuring that these programs promote truly reflective work versus merely descriptive writing.
Narrative medicine has also been used to develop reflective skills. While even more difficult to assess quantitatively, a large qualitative study was conducted at Columbia that employed grounded-theory-based iterative methodology with multiple readers coding 130 student focus group responses following a narrative medicine course. The students reported engaging with themes of “attention,” “representation,” and “affiliation,” all aspects of the narrative medicine pedagogy that were successfully communicated, as well as “critical thinking,” “reflection,” and “pleasure” (Miller, 2014).
Evidence for Patient-Directed Medical Humanities Programs
There are also an increasing number of medical humanities interventions aimed at patients and patient care delivery. The most common interventions studied are music therapy (involving a therapist) and “music medicine” (the use of music without a therapist). Two reviews (Gramaglia, 2019; Dileo, 2008) of music therapy interventions in cancer patients demonstrated improvement in pain, anxiety, fatigue, depression, and quality of life. In Italy, “Donatori Di Musica,” a live classical music performance in the hospital, followed by a shared meal with patients, musicians, and staff, has spread to multiple oncology departments with 150 musicians involved. A quantitative study demonstrated improved anxiety (as measured by a validated assessment tool) among patients (Toccafondi, 2016). Music interventions have also been shown to decrease end-of-life symptoms and increase well-being in palliative care patients (Peng, 2018), decrease stress and pain among Emergency Department patients (Mandel, 2019), decrease preoperative anxiety (Kipnis, 2016), decrease the anxiety of mothers of babies in the neonatal intensive care unit (NICU) (Ranger, 2018), decrease pain in fibromyalgia patients (Alparslan, 2015), reduce agitation among psychiatric patients (Bensimon, 2018), decrease pain and anxiety among hospitalized patients (Xue, 2018), and decrease anxiety and increase well-being among patients undergoing cardiac catheterization (Jayakar, 2017).
While most of the music studies listed use symptoms reported by patients or observed by providers, several studies also include physiologic outcomes. A meta-analysis of randomized controlled trials of music interventions during treatments for burn patients demonstrated heart rate reduction in addition to reported decreases in pain and anxiety (Li, 2017). Cortisol, along with reported anxiety, was reduced in salivary samples of Alzheimer’s patients after a music intervention (De la Rubia, 2018), heart rate variability parameters improved in NICU babies after a musical intervention (Ranger, 2018), and endothelial function improved in cardiac patients after listening to music (Deljanin, 2017).
The performing arts are also being integrated into healthcare. A 2018 meta-analysis of seven randomized controlled trials of dance therapy with Parkinson’s disease patients demonstrated increased executive function. A systematic review of dance used in the rehabilitation of patients with cerebral palsy showed positive impacts on balance, gait, walking, and cardiorespiratory fitness (Lopez-Ortiz, 2018). A theater improvisation course offered by “The Second City” in Chicago demonstrated improved ability to accomplish “activities of daily living” (Bega, 2017). While there are a number of dance and theater programs flourishing (www.aldacenter.org, Shanahan, 2014), more high-quality research is needed to evaluate their impact.
Narrative medicine has also been studied with patients. In a narrative-medicine-based “storytelling” program called TimeSlips in a Pennsylvania care home, participants with mild to moderate dementia demonstrated improvement in quality of life indicators (Vigliotti, 2018). Oncologists also used narrative medicine with leukemia patients to better understand their experience taking Tyrosine Kinase Inhibitors (Breccia, 2016).
A new and exciting direction for the medical humanities is its inclusion in quality improvement (QI) projects aimed at improved healthcare delivery. Given the enormous interest and financial support for QI projects due to quality-based financial incentives for health care institutions, it offers a unique opportunity for the medical humanities. In Italy, narratives of those living with chronic spontaneous urticaria were elicited through a large public campaign; 199 patients submitted narratives that were analyzed via qualitative and quantitate methods with themes extracted to be used in improving healthcare delivery to this patient population, particularly with regard to improved doctor–patient continuity and psychological support (Cappuccio, 2017).
Debates
While humanism in medicine has always garnered theoretical—if not financial—support, the medical humanities has received some pushback against its inclusion in required medical education curricula. While few reject the ideals, some argue that it is not worth the time it would take within crowded curricula, nor is it worth the funding. A related concern is that these programs would add to the already overwhelming workload in training or practice. However, it is worth noting that so-called soft skills, such as communication and empathy, have repeatedly been shown to correlate with patient outcomes, including reduced diabetic complications, improved symptoms of viral illness, improved adherence, and patient satisfaction (Canale, 2012; Rakel, 2011; Kim, 2004; Derkson, 2013).
Addressing burnout and fostering wellness has gained much traction within and outside of the medical community. As healthcare organizations increasingly respond to incentives tied to quality metrics such as patient satisfaction, there is an emerging appreciation that burned-out providers do not provide a high-quality experience to patients (https://cdn1.sph.harvard.edu/wp-content/uploads/sites/21/2019/01/PhysicianBurnoutReport2018FINAL.pdf). Thus, tied as it is to financial incentives, there is much more support and funding for programs aimed at reducing burnout and fostering wellness. This may include the medical humanities, as well as mental health services, self-care, and, most crucially, systems reform. While the medical humanities may be viewed as a form of self-care, they are fundamentally a way to enhance meaning and connection, the lack of which precipitates burnout. There has been some pushback against “self-care,” or any interventions that are directed at individuals. The healthcare system has created an intolerable workplace for providers, and many argue that it is ineffective and insulting to ask those same providers to practice better “self-care.” While systems reforms are desperately needed, and the onus should not be placed on individual providers, it is still essential to help providers cope in an imperfect system. Even in the best of systems, delivering medical care to patients will always be emotionally demanding work.
“Moral injury” is a term that was originally used to describe the moral distress felt by combat veterans. More recently, it has been adapted to describe healthcare providers and has been proposed as a fundamental cause of “burnout.” According to Simon Talbot and Wendy Dean, “Moral injury describes the mental, emotional, and spiritual distress people feel after perpetrating, failing to prevent, or bearing witness to acts that transgress deeply held moral beliefs and expectations” (www.statnews.com/2018/07/26/physicians-not-burning-out-they-are-suffering-moral-injury/). This is an existential conflict felt by providers when they are not able to practice medicine according to their ideals within our broken healthcare system. Taking this argument one step further, it is perhaps not enough to help providers to become more humanistic; rather, we should also be thinking about how to make the entire system more humanistic. This may mean expanding the medical humanities beyond providers to healthcare administrators, healthcare companies, governmental organizations, etc. For many of those whose work affects patients’ lives, they may never interact with a patient at all. Perhaps the medical humanities may be a way to reach these groups and help them to connect to the patients affected by their work.
Conclusions and Future Directions
The medical humanities are both a foundational underpinning of practicing medicine and also a new and exciting approach to intentional interdisciplinary study. There is excitement around including the medical humanities in medical (and allied health professions) education, training, and professional development, as well as growing interest in patient-directed medical humanities work. While evidence has traditionally been of low quality in this field, the past decade has seen a surge in the number of quantitative and rigorous qualitative studies, with very positive outcomes over a huge range of goals.
Going forward, medical humanities programs should continue to expand beyond medical schools to professional development as well as training programs for nurses and allied health professions. Most programs are centered in clinics or hospitals. Hopefully, we will see more programs expanding into other care areas, such as skilled nursing facilities and dialysis centers. More rigorous studies that provide quantitative evidence of long-term outcomes—particularly with respect to metrics relevant to healthcare institutions in the era of quality-based incentives—would be helpful in securing funding and support for this field. Finally, if we truly wish to reform an impersonal medical system that creates burnout and moral injury, as well as poor quality for patients, we must use the medical humanities to foster humanism in medicine among leaders and decision-makers beyond front-line providers.
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