Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that causes patients to progressively lose control of voluntary muscles responsible for movements like chewing, walking, talking, and breathing. No cure exists and disease progression is highly variable. Due to the severity of symptoms and their impact upon patient and caregiver quality of life, the need for palliative and supportive care services for patients with ALS has been clearly identified. However, recent studies suggest a need to tailor these services to the needs of patients with neurological disorders, but little research has been published to this effect for ALS (Shaw 2015, Hobson & McDermott 2016, Boersma et al 2014). It seems that, while somewhat non-standard for the medical field, narrative ethics and narrative research may be uniquely poised to inform the palliative care needs of these patients.
Importantly, palliative and supportive care providers utilize the patient-centerd caring approach. This method of service provision is based on recognition and deep respect for patients as individuals outside of the context of their illnesses—as people who operate in a social world, who are listened to, engaged, informed, and respected by their physicians (Epstein and Street 2011, McWhinney 1985, Gertis et al 1993). Patient-centered caring understands a corresponding obligation for health providers to deliver care that coheres with the patient’s unique values and fits best with their individual circumstances.
This type of approach is not exclusive to best care practices in supportive and palliative contexts. However, in the case of life-threatening and life-limiting illness, these tenets become increasingly important due to the intensive nature of medical interventions and the effects that serious illness can have on a patient’s identity, as well as the identity and welfare of the patient’s family (Frank 2013). The foci and implicit ethical obligations of the patient-centered caring model clearly cohere with the holistic aims of palliative and supportive care. As a majority of life occurs in contexts outside of the clinic, and as suffering and spiritual distress have no medically defined etiology, the fields tasked with improving quality of life and preventing and relieving suffering in its many forms must understand the patient as a person and seek his or her deep involvement in his or her own care. This undertaking is narrative in nature, as it demands an intricate understanding of the patient’s perspective and unique situation. An ethics of care, supplemented by narrative compassion, provides the foundation for a strong, trusting patient-provider relationship grounded in understanding and respect, necessary for the challenges of prolonged degenerative illness.
Though the patient narrative may not encapsulate the entirety of an individual’s experiences, the stories patients tell and the ways in which they are told can provide valuable insight into the nuances of a patient’s worldview and understanding of his or her condition. Distinct from an oral history characteristic of clinical encounters, an illness narrative is broader in scope and tends to provide more information about the patient’s values, modes of reasoning, and the meaning of illness for the individual. Recognizing the value of this sort of knowledge both in and out of the medical context, a broad and incorporative field of narrative scholarship arose that privileged comprehensive, first-hand stories about a challenging decision, event, social construct, or experience.
Narrative scholarship as a whole, including narrative ethics, is a relatively new approach being applied to academic work throughout many disciplines. Due to the novelty of narrative research and the diverse range of substrates to which it can be applied, there is no general consensus about what it means to be “doing narrative ethics”.
To begin to understand the influence the field of narrative ethics may exert in the context of clinical care, Hilde Lidemann Nelson outlines five “things to do with stories” that have moral implications (Nelson 1997):
Developing moral sensitivity: Scholars like Martha Nussbaum and Rita Charon have described the benefits of reading, listening to, or viewing stories, proposing that when one attends carefully to the nuances and complexities of narrative in any of its forms, one’s moral sensibilities are sharpened.
Mode of reflection/representation: Narratives can assist a storyteller in making sense of complex experiences and/or in representing him or herself to others. The first person illness narrative illustrates these tasks. When listened to by healthcare professionals illness narratives may assist in understanding what gives meaning and value to a patient and thus inform providers about conflicting forces that may be causing difficulty for the patient (Frank 1998, 2013).
Reason by analogy: Commonly in medical ethics a narrative, though often brief or incomplete, is used in casuistic endeavors. Here, a morally dubious situation is analyzed with respect to a paradigm case that clearly employs moral principles and theories and is used to guide action in “cases of this sort”. One can then reason by analogy about the best course of action for the particular case at hand, determining what qualifications or exceptions may be made to moral maxims demonstrated in the paradigm based on the differences between the two narratives. Jonsen and Toulmin (1988) advocate for these approaches.
Literary criticism of practices: One can perform literary analysis on stories by applying the tools of textual criticism to patient narratives or social practices that are treated as literary texts. Thus, literary scholars may uncover “moral meanings of health and illness” (Nelson 1998).
Invocation: One can invoke stories to make a moral point. Fables, parables, and anecdotes have long been used to teach children “right and wrong” or provide warnings about the dangers of certain actions. Similarly, patients recount past experiences or the stories of friends to explain why they made particular treatment decisions, requested a specific physician, or avoided medical care altogether.
Holistically assessing palliative and supportive care needs, especially in the context of neurodegenerative disorders, demands a narrative framework—the clinical aspects of a patient’s life cannot be dissociated from the social in order to accomplish the task of amelioration of suffering. Thus, narrative ethics research is uniquely positioned to more completely inform us of patients’ palliative and supportive care needs. By engaging patients in narrative research, we will discern whether there are unrecognized needs, moral frameworks, and modes of reasoning and valuing that arise distinctly in the context of the neurodegenerative illness ALS.
Operating under this hypothesis, I took the opportunity to conduct narrative interviews with a cohort of individuals living with ALS and their family members. Our conversations varied widely depending on the individual, but all presented moving accounts of their experiences with ALS. I heard stories of hope, of acceptance, of struggle and frustration, of human kindness, and of gratitude. Generally, patients were satisfied with their care—though this may have been biased by the characteristics of the population interested in participating in the interviews—and extremely grateful for their health care team. Many found support in faith communities and family, but continued to be challenged by the question, “Why me?” Inspiringly, a large number of patients expressed a desire to participate in research or other altruistic measures, indicating that the idea of helping others—either with or without the same disease—provided meaning and a sense of purpose during uncertain times.
While the majority of the patients’ stories contained encouraging themes with respect to the holistic management of their disease, there were indications of unmet needs mostly related to physical and psychiatric support. The official findings for this study are currently being prepared for publication.
Importantly, the methodology of illness narrative interview indicated efficacy at eliciting themes of palliative and supportive care needs. Additionally—and much to my relief—many of the patients I had the opportunity to speak with cited enjoyment of the interview itself. It seems these conversations gave patients and their families an opportunity to feel heard, to tell their own story, to reason through their own struggles, and to represent themselves as individuals to someone understood to be connected to the clinic team. This unique appreciation of participation in narrative study, especially as a complement to its efficacy at elucidating care needs, speaks to the applicability of this methodology for future endeavors in needs assessment research, particularly in the palliative and supportive care contexts.
Boersma, I, et al. “Palliative care and neurology: time for a paradigm shift.” Neurology 83, no. 6 (2014): 561-567.
Epstein, R.M. and R.L. Street, “The Values and Value of Patient-Centered Care.” Annals of Family Medicine 9, no. 2 (2011): 100-3.
Frank, A.W., The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press, 2013.
Frank, A.W. “Just listening: Narrative and deep illness.” Families Systems and Health 16 (1998): 197-212.
Gerteis, M., et al., Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care. 1 ed. San Francisco: Jossey-Bass, 1993.
Hobson, E.V. and J.J. McDermott, “Supportive and symptomatic management of amyotrophic lateral sclerosis.” Nature Reviews Neurology 12, no. 9 (2016): 526-538.
Jonsen, A.R. and S. Toulmin, The Abuse of Casuistry: A History of Moral Reasoning. Okland: University of California Press, 1988.
McWhinney, I.R., “Patient-centred and doctor-centred models of clinical decision-making, in Decision-making in general practice” in Decision Making and Clinical Practice, Edited by Michael Sheldon, John Brooke, and Alan Rector, 31-46. New York: Springer, 1985.
Nelson, H., “Introduction: How to do things with stories” in Stories and Their Limits: Narrative approaches to bioethics, Edited by H. Nelson. New York: Routledge, 1997.
Shaw, G. “Is palliative care in neurology lagging behind, or on the cusp of something big?” Neurology Today 15, no. 8 (2015): 22-23.