The Power of Stories: Narrative Ethics in Long-Term Care

Introduction

Narrative ethics provides a framework for ethical decision making. This framework informs healthcare practitioners that to make an ethical decision regarding the life and well-being of an individual, one must view that individual’s stories, history, and character as a key component of the decision-making process. It should complement and enhance the usual approach to ethical decision making, which is often based on the foundational principles of autonomy, beneficence, non-maleficence, and justice.

In the clinical setting, narrative ethics is applied through understanding the stories and characteristics that comprise the identity and well-being of both patients and practitioners to assure ethical treatment, communication, and decision making. This article provides a case scenario to illustrate the relevance and importance of narrative ethics in the clinical setting, and to highlight the potential and real beneficial effects of narrative through exploring the various means of its application in the care of patients.

The Case

Mr. H was 82 years old. I (author MG) knew him for about six years while he lived in the affiliated retirement home. I had been asked to see him because he was in chronic renal failure and had refused dialysis. “I’m old. I have no one left in the world. What reason is there to live?” Those were the answers he gave explaining why he had declined dialysis. He was a Hungarian immigrant, widower, and childless, as the children he had from his first marriage perished in the Holocaust. Without dialysis he would die.

With very little prodding, Mr. H continued his explanation as to why he had refused the treatment. “You know that I lost all of my family in the Holocaust. I had a wife and two children who were seven and five at the time that they were taken from me. I remarried after the war to a Canadian woman who came from my town in Hungary, but before the war. We did not have any children, and she died more than 15 years ago. I have been alone ever since. I worked as a bookkeeper but could not continue, and within five years of her death I stopped working, living on a modest pension and some reparations from Germany. The only person left is a distant cousin who lives in London, Ontario, whom I haven’t seen in four years, and she is quite ill herself.”

As Mr. H revealed more and more personal reflections about his own values, beliefs, and memories, woven into a fairly coherent narrative spanning several decades, there was a sacred space opened between us, and a different kind of knowing, for both of us, became possible. He was not simply a “nephrology patient” but a human being with layers of stories, memories, and meaningful experiences important for me to know something about.

The nurses and the attending physician had referred Mr. H to me to see if I could “convince” him to agree to dialysis, as I had known him since the time he moved into the retirement home. It was I who had referred him to the nephrologists some years before. After a psychiatric consultation, which indicated that he was not clinically depressed, the feeling was that he was mentally capable of making his own decision to forgo dialysis. He appeared to understand the potential benefits of treatment and the risks associated. While the healthcare workers may have actually wanted me to try to convince Mr. H to have treatment, they and I knew that we are not in the business of trying to coerce people to undergo treatment just because we think they should. It would be important to understand their “stories” about why they think Mr. H ought to be convinced to do something that seems to be counter to what he actually wishes. My sense is that they too felt that there were additional pieces of experience and knowledge missing from their scanty version of Mr. H’s accounting to them that required an opportunity to be voiced. After all, the consequences of missing relevant pieces of Mr. H’s grand narrative, and him not receiving dialysis, were dire indeed—death.

When Mr. H asked, “What is there to live for?” I responded while alone with him in his hospital room: “For me.” He looked at me, somewhat puzzled and asked, “Why for you?” I replied, “I want you to live longer for me because I like you and because I think the world will be a lesser place without you.” He sat up more on his pillow and asked, “Really?” in his thick Hungarian accent. “Is that really so?” My reply was, “Yes. I have always enjoyed seeing you in the clinic and learning about what you were doing.” He had recounted many stories of his life in Hungary and his Holocaust experience, and how he had overcome the challenges when he arrived in Canada in his early 30s. He told me with pride how he learned English, found work, discovered a group of like-minded friends, tried to rebuild a life with his second wife who then died, and how many of his friends were now old and frail like himself or had died during the past few years. He looked at me and said, “You are a very nice man and a nice doctor, and I would like to do this if it matters to you. But what if I am not happy with the treatment?” I replied, “If after three months of dialysis, you are not happy, we will stop it and make sure that your final days are as peaceful and comfortable as possible.” He replied, “I will give it a try.”

Discussion

I use this case at interactive medical ethics workshops, and the general consensus of the participants is that the patient’s decision should have been accepted as a reflection of our respect for his autonomy—his right to make decisions for himself as to how he wishes to live his life, as long as he is competent. They usually reiterate that he was fully informed and competent in the usual sense of the term to make his decision, and reactions range from ambivalence to disgust for what is perceived on my part to be overriding his rights. Participants often claim that I acted “paternalistically” and did not respect his autonomy.

When I relate the fact that Mr. H continued with dialysis for almost five years, it does not seem to alter their opinions mounting the argument that respect for autonomy should be the paramount ethical criteria. They remain unconvinced that my behavior was ethical by our actions at the end: when dialysis became an undo burden, we agreed to stop it so that he could die in peace. I tend to offer a different version to this story. My interactions with Mr. H resulted in an elaboration and verification of the values and beliefs that guided his decisions; therefore, it is equally likely that our conversations helped to confirm his contemporaneous wishes for himself, given a broader context of the values that informed his decisions, and thus enhanced his autonomy.

The questions that are posed by this scenario include the balance between ethical principles in decision making and the place of the person’s narrative in the complex decision-making process. By knowing the context of decision making in the person’s “story” it is sometimes easier to understand possible avenues that might be pursued to challenge the course of those decisions, while all the time respecting the standard ethics principles. One’s story and life does influence how one actually makes profoundly important life decisions, and reciprocally, one’s important life decisions affects one’s ongoing grand narrative and life.

The Nature of Narrative

Narrative is defined as a story or account of events and experiences, whether true or fictitious. Narrative ethics utilizes this notion of “story” in application to the lives of those in the clinical setting in order to enhance and facilitate care and empathy. This approach seeks to understand individuals in the healthcare system by capturing individuals’ essence through understanding the stories that define their existence. It encapsulates the unique emotions, idiosyncrasies, and character, thus providing insights into the individual’s decisions. It stimulates compassion and understanding, and is oriented towards providing care beyond the usual clinical care context.

There are no fixed principles for implementing narrative ethics. However, there have been many suggestions as to how narrative should be incorporated into the healthcare system. Meininger¹ suggests a three-step process whereby narrative must be acquired and integrated. First, there must be consensus between those who are narrating, those who are listening, and those who are interpreting the meanings enclosed in the story. Stories can be interpreted in many different ways. Consequently, after an individual has given consent to those wishing to hear her story, there must be a constant re-affirming that the interpretation of the individual’s story is valid. Next, there must be coherence between the story presently being told and earlier stories; when listening to the story we must ask ourselves whether the new story is in line with the personal identity of the author as it was recognized in the past, and if the story corresponds with views of the future and aims of the “good life” for that individual.¹ However, this last point is contentious because there are academics and healthcare providers who argue that continuous personhood may be unlikely for patients whose diseases have rendered them demented and without the experience of a unified past. Thus, it is important to consider the current wishes and values of the person in the present, even though he/she may not be able to experience themselves as the same person they were prior to their disease onset.

Meininger¹ believes that it is important to check to what degree the content of the life story corresponds with views of the future and aims in which the “good life” is imagined and conceptualized according to their moral, religious, and/or cultural traditions. Meininger’s final guideline requires that we acknowledge that a story is always open.¹ This latter requirement is crucial, as an individual’s goals, desires, and emotions are always in flux, and this entails renewed listening. For example, Mr. H’s story continued to evolve and his desires changed because a new approach to listening was undertaken, and it was stated that his “story” was not necessarily over. As one narrates, the relationship between the narrator and listener, between the narrator and herself, and between the listener and herself changes; therefore, one must attempt to acquire a continuous “story” of the individual.

While Meininger believes that there are three functional guidelines for implementing narrative ethics, Connelly² advocates a system whereby mindfulness and awareness are the two necessary mindsets essential for the implementation of narrative. Here, mindfulness is characterized as, “a practice of non-judgmental moment to moment awareness,”² and awareness is characterized as, “understanding one’s own capabilities, character, feelings and motivations.”² This view focuses on healthcare providers’ development of awareness that allows them to become more conscious of their own actions, and provides insight into how life experiences and emotions affect interactions with patients, families, and other professionals; it allows them to listen to patients, ask questions, make interpretations, and respond to nonverbal aspects of interactions more effectively. This process facilitates an environment of curiosity and open-mindedness, leading one to become more astute and self-aware.

Connelly² feels that many physicians (and by extension, healthcare providers) do not always understand what being heard or understood means to the individual patient, due to the habitual and standard methods of clinical interaction. Clinicians often rely on routines that lead them to treat patients similarly, making the relationship between healthcare providers and patients less personal and more detached. Neglecting to listen to a patient’s narrative can increase the possibility of diagnostic and therapeutic error, diminishment in the likelihood of personal connections, missed empathetic opportunities, and most important, a feeling by the patient of not being understood or cared for.² Thus, each patient must be acknowledged as unique, with their own narratives. If Mr. H were treated according to a standard clinical and principlist ethical approach, he would not have lived for five more years or known that there was someone who cared for him despite his profound family losses. Therefore, in order to provide better treatment and care, Connelly advocates mindfulness and self-awareness in the clinical setting to break down any automatic or routine responses and interactions to which a healthcare professional may be accustomed.

Another approach to implementing narrative ethics is recommended by Columbia University’s Dr. Rita Charon.³ Dr. Charon believes that narrative medicine is the outcome of the acquisition of the skills needed to recognize, absorb, interpret, and be moved by the stories of illness. Her approach to narrative utilizes those skills that one develops as a reader or reflective writer and applies them to acquire the skills needed to listen to patients, represent in language what they tell, and connect emotionally with them, their families, and other healthcare professionals in communities of care.³ Her approach encompasses a more literary context towards effective clinical practice. It advocates a system whereby an individual’s narrative is acquired, understood, and restated to assure accuracy, and it incorporates sources such as family and other healthcare professionals to provide the most well-developed narrative possible.

Functional Roles of Narrative Ethics

Most scholars in the narrative ethics field share a common conception of narrative ethics as an approach that seeks to understand individuals, and to utilize that understanding to formulate and inform treatment and care. There seem to be significant advantages to the use of narrative ethics. First, while normative ethics seeks to deem certain actions as “right” and “wrong,” narrative places emphasis on what is “good” and “bad” for each individual. It does not see a decision as being “right” simply because a similar decision was made in a previously similar case, and rather sees a decision as right for a particular patient and specific case; in the case of Mr. H it was beneficial to try dialysis under the narrative circumstance but this may not be the best decision for another situation with another person’s story, even with the same likelihood of clinical benefit.

This individualized approach appeals to and acknowledges the unique needs manifested in each case and, therefore, contributes something that principlist-based biomedical ethics does not.

Second, narrative ethics enables caregivers to decrease the likelihood of ethical dilemmas arising by having conversations about values with their patients before a medical crisis results. When a patient’s values are not ascertained until they are in an unexpected crisis, we can only conjecture what they would want, which will often lead to inaccurate assumptions about the desires of the individual depending on the source of the information.

Third, narrative allows healthcare providers to know those things that are not being expressed in clinical files and care plans, thereby developing an understanding of the significance of experiences which provides insight into the personal identity and values of a patient. This makes room for patient discussion, as well as places some responsibility on the staff to present stories that have healing or empathetic qualities embedded in a variety of forums, including movies, individual stories, personalized music, or other venues that they feel will resonate with the patient. Confirmation that there are others who have survived their condition or who have been in their place may give patients motivation. As Dr. Charon describes, “Patients can feel they are not alone in their sadness and their dread. The clinician with narrative competence becomes a witness and not a judge, a companion and not an interrogator, an ally and not simply the bearer of bad news or inflictor of discomfort.”³ As demonstrated in the case of Mr. H, acquiring his narrative revealed pertinent values and conditions of his life that helped define what his needs were in terms of future care.

Narrative to Enhance the Physician–Patient Relationship

A healthy physician– (or other healthcare practitioner) patient relationship is essential to ethical care and decision making in the clinical setting. Ideally, it requires that each decision is consensual, and that each alternative is discussed and considered before a final decision is made. However, determining exact criteria to deem a relationship to be healthy can be difficult. In the aforementioned case scenario, some who heard about the case believed that the decision to try and promote dialysis was overtly paternalistic and representative of an unhealthy or unethical doctor–patient relationship. Nevertheless, if we utilize narrative ethics to determine what constitutes a healthy bond between patient and practitioner, we could interpret the outcome as reflective of a positive interpretation of the relationship rather than a negative one. Ultimately, the choice was that of the patient, but the relationship with the physician helped re-frame both how the decision was made as well as what decision was arrived at.

Narrative ethics requires that a healthcare practitioner get to know and understand his patient’s personal and historically-based needs and desires, and to refrain from making decisions without taking these aspects into consideration. It requires that the practitioner make his patient feel comfortable to vocalize his needs and desires openly and without censure. Such an approach promotes decision making being based on open and honest discussion, and requires constant communication between the physician and patient. Thus, while exact ethical principles that constitute a healthy patient–doctor relationship may not always be determinable, communication is always key to any deep, meaningful understanding of why decisions are being made—hence, the importance of the narrative approach.

If we re-assess the aforementioned case we can understand how this notion of the healthy physician–patient relationship pertains to this scenario. The decision for dialysis was made by the patient in tandem with the compassionate physician, where both actively undertook a process of mindfulness in order to better understand the values, beliefs, and wishes of the patient. There was no coercive force, but rather, in the end, the mutual decision for the patient to receive a trial of treatment. There was constant dialogue between the physician and patient, with the patient remaining at the center of the discussion. The fact that the patient continued on dialysis for the next five years suggests that life offered sufficient meaning for him to continue and, therefore, that the decision for dialysis was a good one, made on the basis of a healthy, compassionate, and meaningful patient–practitioner relationship.

Implementing Narrative

The most frequently recommended experience and context in which one can begin mastering narrative is literature. Reading literature can assist healthcare providers in the preparation for clinical work. It teaches readers how to listen and interpret stories, as well as to reconfigure and retell those stories, which can be transferred to the medical context as the recounting of medical cases with plots and causality.⁴ Furthermore, fictional stories are distant from everyday life, creating a free space where playful experimentation is possible. Stories allow one to better understand the human condition and see things from alternate points of view evoking, “a sudden moment of human intimacy.”¹ Students exposed to narrative training that includes the use of literature develop greater clinical skills in interviewing and allying therapeutically with their patients. Therefore, coaching medical students in reading and writing reflectively about their practices can help them more accurately understand what their patients experience, as well as what they must endure as clinicians in the care of the sick; sharing their stories enables them to feel a sense of connection with each other.

Implications for Practice

There are some difficulties that arise when putting narrative into practice. In the busy physician or other healthcare practitioner’s schedule there is often insufficient time to begin the narrative process with each patient. Even if there were time slots for narrative ethics to be implemented, stories are often prone to being manipulated. Certain aspects of a story can be deemed as salient because they fit with a caregiver’s goals; however, these aspects may not harmonize with the narrator’s intentions. There is also concern regarding the emotional distress that narrative can cause. A practitioner may not want to get to know his or her patients too well, because this makes fatalities more difficult to handle. Therefore, narrative may invade emotional comfort zones. Finally, because the world of medicine is set on many finite principles and frameworks of medical evidence, there is an expressed concern regarding narrative’s less concrete approach that strays from the more generally accepted ethical framework of principalism.

These are concerns that require further exploration. However, we believe that narrative must be incorporated as a relevant and necessary component of healthcare practice. Once importance is placed on the implementation of narrative ethics, we can gradually alter our system to find ways to bring it into the mainstream of medical practice. Narrative ethics is a beneficial practice with great potential to provide enhanced quality of care. It should improve the relationships of all of those who contribute to care provision, whether it be from one caregiver to another, between caregiver and patient, or between healthcare providers, their patients, and their families.

The authors report no relevant financial relationships.