Duke Medical Ethics Journal
"Tell Me What's Wrong With You"
The Ethical Complexity Behind Narrative-Based Medicine
By: Elaijah Lapay
For most of the history of Western medical practice, the dominant way that evaluation and treatment of patients took place, from the perspective of the physician, was through strictly “Evidence-Based Medicine.” EBM, as it is often abbreviated, is medicine that relies on objective measures and biomarkers of patients in order to determine necessary diagnosis and treatment of patients. This objective outlook on medicine was once perceived as the gold standard in the medical practice, and the value of empirical markers of health and sickness are still heavily dependent on physicians to this day, from routine blood pressure and oxygen level monitoring to the use of delineated questionnaires patients often fill out in clinician settings before even getting to meet an actual physician.
In the past decades, however, pushback to the objectivity and biomarker centered approach to medicine has taken place, with medical humanities calling for a recentering of the patient in the physician-patient interaction. One of the ways the greater medical community has pursued the fight for centering the patient in physician-patient interactions is the encouragement of a new and emergent way to think of medicine centered around patient narratives and stories. Many in the medical humanities have hailed Narrative-Based Medicine, or NBM, as the primary tool and solution to fixing the objectivity and patient-decentering objections to EBM, with medical institutions in the Americas and Europe having already adapted medical curricula in explicit favor and integration of NBM into practice (Charon, 2007, p. 1265). However, ethicists and physicians alike have called into investigation aspects of NBM and the growing perspective of this form of medicine as an ultimate all-encompassing positive approach to “humanizing” and re-emphasizing patients in medicine. The hope is to critically investigate the approach, benefits, and ethical considerations of the use of NBM versus EBM and provide a more encompassing perspective on the use and proper role NBM could and should have in the physician-patient relationship.
The value of narrative construction and analysis itself emerged as a topic within branches of the social sciences only in the late 1980s as fields such as anthropology, linguistics, and sociology incurred what became known as the “narrative turn” in discourse and social science analysis (Kalitzkus, 2009, p. 80). Social science analysis over time worked its way into the medical field, as physicians increasingly began to recognize narratives and storytelling as a form of establishing causality and understanding on the part of the patient — as the narrator — and the physicians and nurses — as the audience and potential interlocutors. Humanist physicians began believing in narratives and medical narratives in providing “possibility of understanding which cannot be arrived at by any other means” (Kalitzkus, 2009, p. 81). By the late 1990s and early 2000s, narrative-based medicine disseminated itself across medical academia and word-of-mouth throughout different forms of medicine, from the psychosomatic to family and general practitioner medicine.
"Narrative competence through empathy and trustworthiness is gained in narrative centered physician-patient interactions"
To many, NBM developed as a reactionary measure to EBM and the ability to overshadow the lived experience of the patient, thus leading toward a discussion of one of the most commonly cited benefits of NBM: the strengthening of the physician-patient interaction allows the patient to feel more comfortable with physicians and allows the physician to gain a greater understanding of the patient’s health and well-being — more than “objective” measures may claim. Assessments of pain are one often-cited aspect of the patient’s well-being that can be more accurately understood by the physician in NBM. Often, in EBM, questionnaires will ask patients to rank pain or discomfort as a result of a treatment or in one’s daily life on a numerical scale, essentially asking patients for a seemingly objective measure that is, in reality, highly relative and often culturally and individually bound. Physicians using narratives and asking about measures of pain by framing inquiries on the impact of pain on a patient’s daily life as a narrative or story creates the opportunity for dialogue and context to be built surrounded upon the aspects of life important and relative to the patient, not preconceived notions of pain on the part of the physician that must make the
eventual clinical assessments on their end. Narrative competence through empathy and trustworthiness is gained in narrative centered physician-patient interactions (Rosti, 2017, pp. 4-5), allowing for a strengthening of the understanding and hope of successful treatment of the patient’s pain due to the highly contextualized information gained from interaction as opposed to reliance on highly de-contextualized relative markers of pain.
Medical humanists furthermore point to a related benefit of the use and centering of NBM: to provide a sense of “narrative humility” (Charon, 2007, p. 1266) by allowing patients to construct their narratives based on their identity and issues that matter to them. On a social science and narrative analysis level, language and communication of experience itself serve as a particularly potent way to process and determine what an individual values to the point of voicing it out loud. Language forces organization of the issues that matter, to frame the eventual narrative based on the aspects of the current self worth expressing (Goldie, 2011, p. 306). On a more human and individual level, narrative telling provides a communication bridge between the “life-world” of the patient and the physician, who often have drastically different life experiences, that lead to different personal markers of identity (Kalitzkus, 2009, p. 84).
Self-reflection and humility on the part of the physician, who work daily on a societally massive power differential with the public writ large compared to patients they serve, is asserted by medical humanists to be a necessary part of the physician training and practice.
Tension between medical humanism and the desire for uniformity and objectivity in medicine brings into focus a criticism of centering NBM on the part of the physician: the potential for implicit and unintended bias and emotional— as opposed to practical— action as a result of increased patient narrative use. Physicians are only humans, and thus bias in treatment and prescription of particular treatments over others is not an unfounded concern in the case of NBM; physicians may, for example, provide a higher standard of care or respond faster to patients that can portray a more emotionally-driven narrative of their suffering and pain than one who does not portray such an emotionally-driven narrative, even if levels of need for treatment are actually equal. Other implicit biases such as race, gender or sexual identity, socioeconomic status, and level of ability can also positively or negatively impact the level of treatment a physician provides if such narratives were heavily relied on to determine treatment.
"all narratives are circumstantial, individual, and personal, and should be treated as such"
Another related concern to asking for narratives of patients as a part of treatment are ethics surrounding patient confidentiality and privacy. Narrative-based medicine is predicated on the assumption that patients will sacrifice a certain degree of agency and rights to privacy in order to receive diagnosis of treatment, but there is no clear line between what is truly necessary and what could be considered excessive and invasive on the part of the physician is a real danger that is difficult to regulate or even educate (Tekiner, 2016) Thus, patients not keen to give up a certain degree of agency or privacy may unintentionally receive a lower standard of care since the physician was unable to learn more and relate to the suffering and narrative-based need of the patient. Countless other factors may impact a patient’s decision to share with physicians narratives at all, including historical interactions with physicians and belief in implicit power differentials in the physician-patient interaction. Furthermore, with some patients, simply constructing and reliving through particular life events may induce undue harm that forces the patient to relive trauma in a clinical setting, especially those of marginalized populations, and physicians not trained to recognize and deal with trauma and mental issues may induce greater harm than benefit in patients in eliciting these narratives for the purposes of diagnosis and treatment not even related to narrative content. There is a dangerous potential for ethically impermissible maleficence with populations depending on the narrative and the individual patient, leading to an important point that must be recognized in NBM: all narratives are circumstantial, individual, and personal, and should be treated as such.
Recognizing narrative dimensions of illness and caregiving is the cornerstone of NBM and medical humanities, but it is important to recognize that it is ethically impermissible to completely replace EBM with NBM. Simply put, the biggest challenge in taking a narrative approach to medicine is knowing when to stop. It can be difficult to have physicians, especially those already convinced of the need for medical humanities, to recognize that “disease, disability, deprivation, and death are not stories. They are facts” (Launer, 2002). Although NBM prides itself on its emphasis of empathy on the part of the physician, a practice reliant and vulnerable to highly emotional expression and negligent of safeguarding patient agency has dangerous ethical implications if left unchecked on the part of the physician. It is undeniable that NBM can prove to be a valuable tool in the physician-patient interaction, but making sure physicians recognize that NBM is a tool that must be educated upon, trained, and honed just like the use of EBM and objective but necessary procedures in medicine is imperative. It must be made clear that NBM is not an inherent skill natural to all physicians if the practice is to continue to flourish and provide the greatest amount of positive benefits in medical practice, from advanced surgical assessments to the routine physician check-up.
Charon, R. (2007). What to Do With Stories. Canadian Family Physician, 53(8). 1265-1267. https://www.cfp.ca/content/cfp/53/8/1265.full.pdf
Goldie, J. G. (2011). The Ethics of Listening and Responding to Patients' Narratives: Implications for Practice. British Journal of General Practice, 61(585), 306-307. doi:10.3399/bjgp11x568143
Kalitzkus, V. (2009). Narrative-Based Medicine: Potential, Pitfalls, and Practice. The Permanente Journal, 13(1). doi:10.7812/tpp/08-043
Launer, J. (2002). Narrative Based Primary Care: A Practical Guide. Oxford: Radcliffe Medical Press.
Rosti, G. (2017). Role of Narrative-Based Medicine in Proper Patient Assessment. Supportive Care in Cancer, 25(S1), 3-6. doi:10.1007/s00520-017-3637-4
Tekiner, H. (2017). Ethical Considerations Related to Narrative Medicine. Patient Centered Medicine. doi:10.5772/66167