Integrating Health Humanities, Social Science, and Clinical Care

A Guide to Self-Discovery, Compassion, and Well-being

Anna-leila Williams

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351388290
• Edition: 1
• Topic: Medizin
• Subtopic: Pflege

The health humanities are widely understood as a way to cultivate perspective, compassion, empathy, professional identity, and self-reflection among health professional students. This innovative book links humanities themes, social science domains, and clinical practice to invite self-discovery and recognition of universal human experiences.

Integrating Health Humanities, Social Science, and Clinical Care introduces critical topics that rarely receive sufficient attention in health professions education, such as cultivating resilience, witnessing suffering, overcoming unconscious bias, working with uncertainty, understanding professional and personal roles, and recognizing interdependence. The chapters encourage active engagement with a range of literary and artistic artefacts and guide the reader to question and explore the clinical skills that might be necessary to navigate clinical scenarios.

Accompanied by a range of pedagogical features including writing activities, discussion prompts, and tips for leading a health humanities seminar, this unique and accessible text is suitable for those studying the health professions, on both clinical and pre-clinical pathways.

1 Introduction: Health humanities

Purpose of the book

Health humanities is an emerging interdisciplinary field. Content is a synthesis of principles derived from the humanities and healthcare, not a superimposition of humanities on biomedicine (Jones, Wear, & Friedman, 2016). Health humanities curricula are recommended as a means of cultivating perspective, compassion, empathy, professional identity, and reflection among health professionals and health professional students (Garden, 2016; Shapiro, 2015). Many students welcome the opportunity to explore the wellspring of questions related to health humanities and refresh their inherent compassionate and empathic tendencies. However, throughout health professional education, biomedical sciences are valued so highly, it can be challenging to find a foray into health humanities.

More often than not, time devoted to health humanities curricula in the education of health professionals is undervalued (Bleakley, 2015a). I have heard health professions educators refer to humanities curricular content as “recess” – a respite from what they perceive to be the real curriculum. However, there is growing evidence to refute the exclusive domain of biomedical sciences as core curriculum. Social, behavioral, and environmental factors account for more than 50% of disease in the United States (Center for Disease Control and Prevention, 2014) and 25% of disease worldwide (Blas & Kurup, 2010). The staggering influence of social, behavioral, and environmental factors on disease development make the integration of behavioral and social science content into health professions curriculum indisputable and indispensable if we truly intend to improve the health of the population. With a behavioral and social science lens, we may be able to address health disparities and inequities, social determinants of health, cultural awareness, and social accountability. In the same vein, health humanities, with emphasis on first person narrative for patients, family members, and health professionals, help us understand and appreciate the social, cultural, and spiritual influences on illness, which when ignored, can tragically impede the effectiveness of biomedicine.

The purpose of this book is to present a practical guide for a health humanities–social science curriculum that makes overt links to clinical care and emphasizes self-discovery and self-awareness. By unambiguously tying health humanities and social science to clinical practice, learners are encouraged to question and explore the clinical skills necessary to navigate a clinical scenario. At the end of each chapter, I recommend literary and artistic artifacts that integrate with clinical science curricula, thus reinforcing relevance to the practice of medicine. The recommended artifacts use a variety of media, such as written word, spoken word, photography, and videography, to express their content and will likely have broad aesthetic appeal. For example, learners who are not attracted to literature will find visually mediated artifacts elsewhere in the book, and similarly, those who do not respond to visual images will be sated by the literary pieces. Writing prompts provided throughout the book assure learners have the opportunity for reflection on their perspectives of patients, healthcare workers, and the healthcare system.

The book emphasizes the value of self-discovery and self-awareness. In a healthcare arena dominated by technology and fueled by economic outcomes, it is easy for us, as health professionals, to drift from our calling to serve fellow human beings and lose awareness of our untoward effect on patients and colleagues (Churchill, 2003). When we are self-aware, we are less likely to engage in aberrant and unprofessional behavior that threatens our own well-being, as well as that of our patients and colleagues. Moreover, self-awareness is a necessary condition for health professionals to engage in authentic, compassionate relationships with co-workers and those in our care.

Overview of health humanities

The fields of healthcare and humanities are distinct, and until relatively recently, their canons had little overlap. Yet, when we focus on content, it is easy to welcome the marriage of the two fields. Both healthcare and humanities are committed to exploring what it means to be human, in all the manifestations of our species – biological, psychological, social, and spiritual. The fundamental differences between the two fields derive from their ways of knowing, and the privilege given to reductive versus experiential knowledge (Boudreau & Fuks, 2014). Eric R. Kandel, MD (2012, p. 449), Columbia University professor of neuroscience, Director of the Kavli Institute for Brain Science, and Nobel laureate writes:

Artists and scientists alike are reductionists, but they have different ways of knowing and making sense of the world. Scientists make models of elementary features of the world that can be tested and reformulated. These tests rely on removing the subjective biases of the observer and relying on objective measurements or evaluations. Artists also form models of the world, but rather than being empirical approximations, artists create subjective impressions of the ambiguous reality they encounter in their everyday lives.

Humanities scholarship, illness experiences, and clinical practice are driven by questions about suffering, resilience, hope, and meaning. They have informed each other for centuries and in the near past have given birth to the unique discipline of health humanities (Dolan, 2015). Our pathways to knowledge and ways of knowing expand when we recognize and embrace the synergy of mind, heart, and body. With new ways of knowing, we respect our experiences, nourish our human capacity for insight, and enhance our clinical skills and acumen (Chiavaroli, 2017).

As with any nascent field of study, the boundaries that define health humanities are permeable with a tendency toward inclusion. That said, prevailing consensus at present implies the health humanities canon encompasses stories of illness, disability, and caring, presented by historians, social scientists, ethicists, and artists, as well as patients, healthcare workers, and family members (Bleakley, 2015b). The stories may be expressed through multiple media, including visual art, theater, music, written word, and spoken word. The emergent state of the health humanities is both strength and weakness. Its strength springs from the dynamic creativity that accompanies boundlessness and the expansion of thought that is inherent in diversity. The weakness stems from its lack of cohesion. Critics who want to cull health humanities from biomedical education need only point to an unsubstantiated corner of the field to undermine the entire discipline. During this early period, while scholarship, metrics, and efficacy studies are in development, health humanities remain vulnerable to the whims of the dominant biomedical culture.

Philosophical underpinnings

Underpinning this text are basic tenets of philosophy of medicine. Although one can certainly navigate this book, and even clinical practice, without any understanding of philosophy, a brief orientation to the basic tenets may add depth to one’s experiential learning.

Philosophy of Medicine is a growing field with emerging work devoted to understanding disease causation, characterizing notions of health and disease in different social contexts, illustrating the genesis of mental illness stigmatization, and more (Carel & Cooper, 2014). Here I focus exclusively on phenomenology – the philosophical study of perceived human experience.

Phenomenology

It is essential that health professionals understand our patients’ experiences of illness. The more we are able to comprehend, the more likely we are to come up with an accurate diagnosis, and develop and execute a treatment plan that aligns with the patient’s values and life. Anything short of that is an exercise in futility for the health professional and a danger to the patient. One important way of understanding the patient’s experience of illness is through his or her first-person narrative, which philosophers of medicine refer to as phenomenology. Phenomenological approaches give us the patient’s view of the life changing and disorienting aspects of illness, and explore what it is like to instill bodily dysfunction into one’s everyday life (Carel, 2008; Carel, 2011; Svenaeus, 2000; Toombs, 1988). The literary and artistic artifacts recommended in this book are primarily phenomenological, with patients sharing their lived experience with illness and suffering.

Conceptual frameworks

Conceptual frameworks provide a systematic approach to organizing key variables for a scholarly undertaking and promote a common language (Maxwell, 2013). Constructed from the extant literature, a conceptual framework makes one’s assumptions, expectations, beliefs, and theories transparent, and displays purported interactions and relationships among variables, thus providing the argument for the relevance of one’s scholarship and the methods used to define it (Ravitch & Riggan, 2012). For this text, three conceptual frameworks that build on each other helped inform the inquiries made into the human experience, as well as the selection of literary and artistic artifacts.

The biopsychosocial model of medicine

First proposed in the 1970s by physician and University of Rochester School of Medicine professor, George Engel, MD, the Biopsychosocial Model of Medicine was radical for its time, taking a firm stance in opposition to the “reductionistic,” “physicalistic,” “dualistic” biomedical model. Dr. Engel (1977, p. 132) wrote,

the existing biomedical model does not suffice. To provide a basis for understanding the determinants of disease and arriving at rational treatments and patterns of health care, a medical model must also take into account the patient, the social context in which he lives, and the complementary system devised by society to deal with the disruptive effects of illness, that is, the physician role and the health care system. This requires a biopsychosocial model.

Engel’s Biopsychosocial Model of Medicine offers a practical framework to explore suffering, disease, and illness from the patient’s experience. By moving beyond the biological confines to also attend to the patient’s psychological, social, and cultural context of illness, the health professional can be responsive to patients with dysphoria and dysfunction, regardless of the origin of the symptoms.

Explanatory model of disease

Arthur Kleinman, MD, MS, physician and anthropologist, was able to use the centrality of the patient experience to articulate new understanding of disease and illness. Dr. Kleinman’s (1988) Explanatory Model of Disease takes a holistic view of illness and its impact on individuals and families. Dr. Kleinman posits that each person’s illness is distinct, characterized by an individual’s culture and history. Although similar to the Biopsychosocial Model, the Explanatory Model is emphasizes the stimulus of culture on one’s interpretation of symptoms and recognition of the influence of family and social structure on one’s approach to treatment.

Kleinman, Eisenberg, and Good (1978, p. 258) define illness as “experiences of disvalued changes in states of being and in social function; the human experience of sickness.” This definition is in contrast to disease, which the authors define as “abnormalities in the structure and function of body organs and systems.” When we consider that health professionals exist to care for patients, and that the word patient comes from Latin roots meaning one who suffers, it seems rational that we concern ourselves at least as much with illness as with disease. Although some health professions have chosen to discard the word patient in favor of perceived egalitarian, non-hierarchical language such as client or health consumer, I assert that someone who is ill is at risk of suffering. In this book, I will use the word patient, which remains the primary reference label used at medical, physician assistant, and nursing schools in the United States.

Social ecological model of health

The Social Ecological Model of Health was developed as a collaborative effort of the World Health Organization to help prioritize equity and recognize illness and health within the socioeconomic and occupational context of an individual’s life. The model acknowledges global differences in perceptions, challenges, and opportunities related to health while considering the psychosocial, economic, educational, cultural, and environmental conditions in which people live, work, worship, and engage in leisure activities (Dahlgren & Whitehead, 1991). The model categorizes illness and health as consequences of political and social agendas, with disenfranchised and vulnerable members of the population at risk for exploitation. With the individual at the center of the model, the display includes lifestyle behaviors, and community and social networks, and shows the pressures exerted by agriculture and food production, education, work environment, unemployment, water and sanitation, healthcare services, and housing. The Social Ecological Model of Health highlights the many ways and venues that affect an individual’s health.

The models in this book

Throughout this book I periodically revisit the three conceptual frameworks (Biopsychosocial Model, Explanatory Model of Disease, and Social Ecological Model of Health), with the aim to explicate principle ideas. The models underscore the complex interplay among health, illness, disease, and suffering, and help assure that discussions and examples in this book are multidimensional representations of the human experience.

Illness language and narratives

Linguists, sociologists, anthropologists, and others have explored extensively the language of illness, and the effect language has on the person expressing the words and the person receiving the words. By extension, illness language comprises illness narrative. The language-narrative connection leads us to two questions: What effect does language have on the story, and what effect does the story in turn have on us – especially on our perceptions of health and illness? In this introductory chapter, I briefly highlight some of the formative work in the fields of illness language and illness narrative to heighten the reader’s awareness of the subtleties of language that one may encounter later in the book. In addition, attention to language can be a venture toward self-discovery when one reads one’s own written reflections as suggested during the activities at the end of each chapter.

Language

Let’s think for a moment about the English language words often used in association with illness stories. Perhaps you have heard people say someone is “battling cancer,” “putting up a good fight,” while someone else is “controlling her hypertension” while helping her father who “suffers from Alzheimer’s” and her daughter who is “down” with the flu. Furthermore, nations have “eradicated” small pox and “wiped out” polio. Each of these phrases characterizes illness and disease as fierce and formidable opponents that must be handled aggressively. Linguist Suzanne Fleischman (1999) explores the psychological substrate from which illness language emerges and the unconscious meta-message the language conveys. Her thoughtful, scholarly reflection compares the language of physicians and patients, and the language transitions that occur, especially for patients, as disease becomes part of their self-identity. Fleischman, and Susan Sontag (1978) before her, argue that by using aggressive metaphorical language, we mythologize and objectify disease. The objectification helps us consider disease as something that we overcome and expunge, like a military conquest, rather than something that is integral to our lives. Within the linguistic paradigm, the patient – the one who suffers – is either a warrior who is up to the disease challenge, or a victim who is not.

Other scholars have looked at sociolinguisti...