Keywords

Stories Matter

In her 2009 TEDGlobal Talk, “The Danger of a Single Story,” author Chimamanda Adichie discusses the double-edged power of narratives:

Stories matter. Many stories matter. Stories have been used to dispossess and to malign, but stories can also be used to empower and to humanize. Stories can break the dignity of a people, but stories can also repair that broken dignity (Adichie2009).

Stories which, for our purposes can span from fictionalized accounts of events to personal narratives, regularly inform public health practice. We use stories to understand and communicate the data we gather. We use stories to educate and to implement interventions and new measures to protect the public’s health. We even use stories to understand what we have done right in our work and where we could improve.

This edited collection hopes to add yet another role for narratives in the field of public health: as a vehicle for ethical discussion, reflection, and decision-making (also known as narrative public health ethics). Narrative public health ethics operates under the same assumption made by Adichie: that stories (the plural form) matter. And it is through the existence of multiple stories that we can gather a fuller, more nuanced picture of the ethical issues.

The texts represented in this collection span the ways in which narratives and resources are available in public health settings. We might consider three types of narrative: public narratives, implicit narratives, and explicit narratives. Public narratives are understood as records of an engaged public such as social media, public media, and transcripts of public engagement. These are the words of a community filtered through a record. While not written to tell a story, wrapped within the text are the elements of narrative. Implicit narratives are those found in the qualitative and quantitative data in fields like epidemiology, history, medical sociology, medical anthropology, and bioethics. These implicit narratives do not start out as narratives (i.e. the creators are not writing with the intention of telling a story). Instead, implicit narratives must be made explicit through ways of reading and analysis as discussed later in this chapter. Finally, there are explicit narratives which are perhaps the type that first come to a reader’s mind when thinking of stories. Explicit narratives may be fiction or non-fiction and contain recognizable literary elements such as characters, dialogue, conflict, and plot. In explicit public health narratives, for example, one might see a conflict in the form of an epistemological clash and characters that include humans, microbes, and the environment.

What follows is a brief overview of narrative public health ethics which can be used as a guide for engaging with the narratives contained within this book. The first section introduces narrative medical ethics, which serves as the foundation for the public health narrative ethics we propose in this book. The second section explores the newly developing field of narrative public health ethics and surveys scholars who have laid the groundwork for this approach. Finally, conclusions are drawn with consideration given to major challenges and future directions for the field of narrative public health ethics.

Introduction to Narrative Ethics

Narrative Medical Ethics

The term “narrative ethics” has become ubiquitous in both professional and academic disciplines like literature, medicine, and ethics. Despite widespread use of the term, there is no single definition or approach to narrative ethics. In his entry for the Encyclopedia of GlobalBioethics Clive Baldwin distinguishes two primary, but distinct, approaches that are signaled by the term narrative ethics: “narratively informed ethics” and “narrative ethics” (Baldwin 2015). Regardless of the distinction within narrative ethics, discussion and development of the field has primarily occurred within the field of medicine with most of the focus on physicians and patients.

“Narratively informed ethics,” according to Baldwin, employs both fictional stories and non-fiction personal narratives to “support ethical development or reasoning” for clinical practitioners (Baldwin 2015). In particular, the focus of narratively informed ethics is to help professionals develop empathetic listening strategies and, more recently, share their own stories to help reduce burnout and promote mental health. The narratively informed ethics approach has been developed by scholar/medical practitioner Rita Charon who has argued that “what medicine lacks today—in singularity, humility, accountability, empathy—can, in part, be provided through intensive narrative training” (Charon2006, viii). For Charon, “A medicine practiced with narrative competence will more ably recognize patients and diseases, convey knowledge and regard, join humbly with colleagues, and accompany patients and their families through the ordeals of illness” (Charon2006, vii). According to Charon, literary training can help future physicians become better listeners: “By the time a student has been coached in close reading for a period of time, he or she develops the reflexes to notice many, many aspects of a text” (Charon2006, 113).

“Narrative ethics,” in contrast, uses narrative as an ethical framework rather than as an ancillary tool for enhancing empathy. However, narrative ethics remains largely narrative medical ethics and focused on patients and clinicians (especially physicians). James Phelan’s entry on Narrative Ethics in The Living Handbook of Narratology helpfully provides a concise definition of narrative ethics.

Narrative ethics explores the intersections between the domain of stories and storytelling and that of moral values. Narrative ethics regards moral values as an integral part of stories and storytelling because narratives themselves implicitly or explicitly ask the question, “How should one think, judge, and act—as author, narrator, character, or audience—for the greater good?” (Phelan 2013).

Unique to a narrative ethics approach is the application of literary analytic techniques to better understand the moral values and ethical dimensions of stakeholders. Although public health could benefit from both narratively informed ethics and narrative ethics, the work of this book is focused on narrative ethics.

In 2014, The Hastings Center Report published a special issue on narrative ethics. The focus was on narrative ethics in the clinical setting, particularly when applied to bioethics consultation services. In this special report, literary scholar and clinical ethicist Martha Montello makes the claim that narrativists (those taking a narrative ethics approach) focus on the how (questions like: How did stakeholders get here? How do stakeholders want to move on from this juncture?) whereas traditional medical ethics focus on the what (for example, What happened? What should we do next?) (Montello2014, S3). In short, whereas traditional medical ethics is directive focused, narrative medical ethics focuses on progressions.

Montello outlines four key literary elements applied to a narrative approach to medical ethics.

Voice::

“Who’s telling the tale?” and “From whose perspective are we hearing it?”

Character::

“Who is at the center of the tale?” and “Whose story is it?”

Plot::

How do events progress? How are details linked?

Resolution::

Progression in the story rather than a solution (Montello2014, S4–5).

The following section briefly considers how each of Montello’s narrative elements apply to narrative public health ethics.

Narrative Public Health Ethics

Narrative public health ethics can trace its roots to both narrative medical ethics as well as the larger field of the health humanities which proposes an exchange between traditionally humanistic disciplines (e.g., literature, philosophy, history) and health professionals (e.g., public health, clinical medicine, physical therapy, nursing).

Stories and narrative are not novel in the field of public health. Lise Saffran et al. (2020) has turned to empirical evaluation of storytelling and literary techniques in public health classrooms while Kate Winskell et al. (2015) has used close reading of narratives to study HIVstigma. While humanities scholars like Priscilla Wald (2008), Cristobal Silva (2011), and Rebecca Garden (2019). However, there is still a critical gap in the scholarship, pedagogy, and application of narrative public health ethics.

Although the field is still developing and there is no authoritative source for defining narrative public health ethics, one can understand narrative public health ethics as an approach that uses narrative as a framework to approach population-level ethics. Given this understanding of narrative public health ethics, it makes sense that our starting place will always be a narrative (rather than a case study or scientific report). For the purpose of this book, we have taken a broad approach to narrative that encompasses both fiction and non-fiction stories. In the remainder of this section This section will return to the four literary elements of voice, character, plot, and resolution to explore how they might be applied to narrative public health ethics. There is no standard order for applying the aforementioned elements to ethical analysis of narrative. Further, the elements will often blend into and inform one another. For example, a discussion of voice will often depend on, and even inform examination of character in a narrative. Thus, while this chapter has broken each element into discrete sections here, those teaching or applying a narrative public health ethics approach will encounter less distinction between the elements.

The literary element of voice, as Montello proposes it, requires a bit of complex analytical engagement and the development of narrative reading strategies to recognize that stories often contain multiple voices, perspectives, and, often tellers. Thus, one has to account for both the teller (the person sharing the story) and the voices represented (often as characters) who may be distinct or an extension of the teller.

To get a sense of the complexity of voice, one need only look to any detective fiction like the kind written crime novelist Agatha Christie, where an “unreliable narrator” is the storyteller. Because the teller is crafty, they can insert themselves into the story and manipulate the voices of others in such a way that the teller’s own complicity in the so-called crime goes unnoticed by the reader.

The concept of voice in narrative public health ethics presents a unique additional challenge in that narrative has traditionally been viewed as a mode of individual expression. Stories offer us insight into the mind of individuals (storytellers, characters, writers). Thus, how do we approach narrative ethics and the question of voice when public health focuses on the community and population level? The answer, to return to Adichie’s point about the importance of multiple stories, is through recognition that there is no single story.

According to Howard Brody and Mark Clark (2014), unreliable narrators (like the detective novel example above) are telling “bad” stories. Bad stories are not bad in the sense that they aren’t entertaining or well written. Instead, “stories are bad when we need to understand something by moving on to different stories told from different perspectives but cannot because the initial story prevents us from seeing this and from seeking those alternative stories” (Brody and Clark 2014, S9). This lure is particularly appealing when thinking of narrative public health ethics. One could easily become seduced by the appeal of a single voice, telling a, single story masquerading as representation of a community.

To deal with the trap of the single story, just as Adichie suggests, the goal is to take a comparative approach to narrative public health ethics. Creating space for multiple stories (that employ different voices) helps prevent the reader from taking a single narrator at face value. Readers must be on the alert for “bad” stories; dominate narratives of the powerful that suppress or obscure the vulnerable while maintain the façade of an objective, omniscient story. We must remain skeptical of a single, omniscient voice in our narrative public health ethics practice in order to “… learn to detect stories that make it too hard for the vulnerable to hold their own. We can learn to respond to such stories with a demand for additional stories—not just any additional stories, but ones in which the point of view shifts to favor how the world looks to the characters previously marginalized” (Brody and Clark 2014, S9). Thus, for example, narrative public health ethics would rely upon gathering stories not just from researchers or students, but from communities and other stakeholders directly impacted by public health interventions.

Regardless of one’s comfort with literary analysis, almost everyone will be familiar with the element of character. In fact, character is often the first thing we learn about the texts we encounter; one need only ask a young child who their favorite movie or book character is in order to see how early we come to recognize characters. However, when we turn to a deeper analysis of narrative, character becomes easy to confuse with voice because both are represented in the story. However, voice indicates a certain level of power; it is the person who is telling the story, who is being given agency to speak. Whereas character involves both those who have voice as well as those who are simply represented. For example, both the narrator and the person who has no lines in the narrative are characters. When we think of community, character challenges us to recognize that there is no single character, no one story, but rather a web of stories. When listening to stories, and following characters, we should not only follow the journey of those who are represented but also consider the characters on the margins and those who exist beyond the text. Understanding the stories, perspectives, and voices of characters on the margins can add to the discourse and examination of ethical concerns.

Characters exist within a plot. For Montello, stories create expectations as they go. “One thing happens because of another” (Montello2014, S4). However, those reasons are rarely neat and orderly cause and effect. Plots, especially in the domain of life, are often complex, twisted mazes with many seeming detours, back-roads, and a few potholes. The work of narrative ethics means encountering and recognizing complex plots and disentangling and extracting meaning from them. Other times, it means resting in the uncomfortable space where there is no meaning between events. This is particularly true of public health emergencies where plots are disrupted by something unexpected like disease, a natural disaster, or scarcity of resources.

The final literary element Montello proposes to guide narrative ethics is resolution. Life narratives do not conclude until life itself has concluded. Rather than tidy final resolutions, we might imagine a network of individual stories (or individuals and communities) that build upon one another. For example, one might think of the story of meeting a research participant for the first time. While the story of that first meeting will have a beginning, middle, and end, the overall narrative of both the researcher and participant and (possibly) their shared experiences does not end with that initial meeting.

Montello positions resolution as a “progression” rather than solution; “Resolution can come when meaning and purpose and commitment deepen, when one narrative thread is lost as a new one is being found” (Montello2014, S5). The goal of narrative public health ethics is to arrive at a resolution; that is, a progression from one step or episode to the next. By taking into account the whole of the story, we can examine the how: How did the stakeholders arrive at the current situation? Resolution can help us understand a second how: How do stakeholders wish to proceed?

Narrative public health ethics is not limited to Montello’s four elements. As the field continues to develop, new foci will emerge that are salient to public health ethics. For example, one could imagine language, mood, and tone could function as additional methods for understanding the ethics at play. What kind of language is the writer using to convey their message? Does it emerge from public health discourse, or is it steeped in shared language of the community? What might mood (i.e. the writer’s attitude to the topic of the narrative) and tone (i.e. the feeling elicited by the writing) tell us about the writer’s values?

Critiques of Narrative Ethics

Because the field is so new, to date, there are no significant critiques of narrative public health ethics. However, one may turn to critiques of use of narrative in medical ethics to anticipate some of the critiques that may be leveraged for public health applications. This section will outline four particular critiques that those interested in narrative public health ethics will need to consider going forward.

First, narrative ethics assumes everyone is comfortable with the use of narrative form or storytelling. Additionally, developments of narratives can feel intrusive. Narrative approaches to ethics, while touting the benefits of the framework, rarely consider the ethical implications of the mere act of constructing and sharing a narrative. In public health, especially, there may be situations where stakeholders either do not feel they have a duty to share their story or listeners do not have a right to engage. When faced with this issue, public health practitioners will need to remain vigilant against telling the “single story.” If only certain stakeholders feel comfortable sharing their story, is there enough representation to adequately frame and analyze the ethical issues at hand?

Second, Christine Mitchell (2014) argues that storytelling involves the act of selection, whether conscious or, more often than not, unconscious. It is impossible to incorporate every detail of a story, and the listener is limited to the details the teller includes. However, this critique may apply to any form of information shared when discussing an ethical issue (consider, for example, the work of case studies). However, this idea of narrative selection, just like attention to voice and character, challenges us to attend to the information that is missing and consider, in our ethical deliberation, if (or why) that missing information is key to our own thinking.

Finally, stories are not unvarnished, objective, value-neutral representations of events. Mitchell in particular notes that stories, especially in the hands of a skilled teller, slip naturally between representation of phenomena and ethical content thus giving “expression to what the teller thinks is right and wrong, admirable and reprehensible, worthy of telling or not” (Mitchell 2014, S14). This is why one could solicit the narratives of five people who experienced the same event and receive five vastly different stories in return. Such slippage is natural and, in fact, the mark of good storytelling that distinguishes a narrative public health approach to a report or case study. This third critique illustrates the importance of educating and developing tools for public health professionals about how to incorporate narrative ethics approaches into their work. Those untrained and unaccustomed to such a framework could understandably approach narratives as objective truth rather than as a complex comingling of values and events (i.e. phenomenon).

Hilde Lindemann suggests three steps to address critiques leveraged against narrative medical ethics:

  1. 1.

    Stories should be co-constructed. In other words, stories may benefit from collaborative co-authorship. In public health this might mean community members each contribute to a shared story. Ultimately, the goal of truly co-constructed stories is that they help avoid what Chimamanda Adichie warns against: the single story.

  2. 2.

    Stories should be critically examined by asking questions. Engaging with literary elements can help raise questions about the most relevant moral considerations that could or should be raised in the context the narrative presents.

  3. 3.

    Develop a narrative sophistication to recognize “when the story needs telling and when it isn’t yet ready to be told” because the real phenomena that form its content are not yet ready to be told because events either haven’t fully developed or people haven’t fully digested their meaning (Lindemann2014, S31).

Public health narrative ethics, which is likely to face similar critiques, could benefit from Lindemann’s suggestions. In particular, the first recommendation to co-construct stories, seems well-suited for a population-based approach to ethical analysis of narratives.

The Future of Narrative Public Health Ethics

The field of narrative public health ethics faces two primary challenges as it continues to develop: programmatic and evidentiary. Because narrative public health ethics relies on certain narrative competencies, the methodology for adopting this approach is not intuitive. Public health students and professionals, especially those who do not have a background in the humanities may find the process of interpreting or even producing narratives challenging. It is the hope of this book that we may contribute to the ongoing education efforts in narrative public health ethics.

Second, to date, there is no robust evidentiary base to support the efficacy of narrative ethics (medical or otherwise) as a method for ethical analysis. While there have been a number of studies that have led to reports in the popular press that reading enhances one’s ethical and empathetic abilities.Footnote 1 Whether narrative ethics is an empirically valid source of ethical insight is still largely unknown. Research to study the role of narrative public health ethics, especially while the field is still developing, could provide not only a fruitful means of supporting its continued application in public health ethics but also provide new insights into how to improve narrative methods.