The Desire for Coherence and the Limits of Narrative Medicine for Patients with Verbal and Cognitive Deficits
Tara Flanagan, MDiv, PhD Candidate, Loyola University Chicago
A concept of the narrative self can be valuable for many patients, particularly terminal patients who are capable of engaging in life review. However, there are three notable limits to the practice of narrative-based medical care for patients, limits having to do with the patient’s physical and cognitive capabilities and limits concerning the patient’s caregivers. In this paper, I examine narrative understandings of the self for patients at the end of life, with a focus on patients with verbal and cognitive deficits and patients receiving institutional and technological care. Though research has been done within the field of health care ethics on the value of narrative method, in this presentation I adopt a skeptical posture: I demonstrate how narrative medicine applies to and benefits patients at the end of life, while inquiring into the limits of narrative medicine, particularly for patients with limited ability to speak in a linear, coherent manner.
There are multiple reasons why narrative methods in medicine (attending to a patient’s story, parallel charting, and life review, among others) are valuable, but ultimately limited in scope, and often impractical given how medical care is provided in the United States currently. The first is that not all patients are able to offer a narrative due to fatigue, aphasia, lack of consciousness, or due to a cognitive deficit such as Alzheimer’s disease. Physically and cognitively some patients cannot think along the lines of a linear narrative and are unable to share their narrative with another. A patient with a cognitive deficit can also engage in behaviors that are interpreted by clinicians and caregivers, behaviors such as picking in the air or at themselves, nodding, rocking, staring, and other physical behaviors, that may or may not have meaning.
Another reason a patient may not adequately be able to share their story is because the nature of their pain is untranslatable. It cannot be verbalized—the person in pain may only be able to offer sounds or wincing, or they may not have the requisite energy available to turn their pain into words. Here I look primarily to the work of Dorothee Soelle and Simone Weil on the interplay between pain and communication from a theological perspective.
Finally, there are limitations to a caregiver’s ability to understand the experience of the patient. A caregiver can approach a patient with a desire for coherence and a hope to understand the patient’s experience, but it is this very striving for narrative coherence that I look to and critique, claiming that the desire to “fill in the gaps” for patients who have disrupted speech or for patients who are nonverbal is one that is ethically problematic and calls for attention.
A concept of the narrative self can be valuable for many patients, particularly terminal patients who are capable of engaging in life review. However, there are three notable limits to the practice of narrative-based medical care for patients, limits having to do with the patient’s physical and cognitive capabilities and limits concerning the patient’s caregivers. In this paper, I examine narrative understandings of the self for patients at the end of life, with a focus on patients with verbal and cognitive deficits and patients receiving institutional and technological care. Though research has been done within the field of health care ethics on the value of narrative method, in this presentation I adopt a skeptical posture: I demonstrate how narrative medicine applies to and benefits patients at the end of life, while inquiring into the limits of narrative medicine, particularly for patients with limited ability to speak in a linear, coherent manner.
There are multiple reasons why narrative methods in medicine (attending to a patient’s story, parallel charting, and life review, among others) are valuable, but ultimately limited in scope, and often impractical given how medical care is provided in the United States currently. The first is that not all patients are able to offer a narrative due to fatigue, aphasia, lack of consciousness, or due to a cognitive deficit such as Alzheimer’s disease. Physically and cognitively some patients cannot think along the lines of a linear narrative and are unable to share their narrative with another. A patient with a cognitive deficit can also engage in behaviors that are interpreted by clinicians and caregivers, behaviors such as picking in the air or at themselves, nodding, rocking, staring, and other physical behaviors, that may or may not have meaning.
Another reason a patient may not adequately be able to share their story is because the nature of their pain is untranslatable. It cannot be verbalized—the person in pain may only be able to offer sounds or wincing, or they may not have the requisite energy available to turn their pain into words. Here I look primarily to the work of Dorothee Soelle and Simone Weil on the interplay between pain and communication from a theological perspective.
Finally, there are limitations to a caregiver’s ability to understand the experience of the patient. A caregiver can approach a patient with a desire for coherence and a hope to understand the patient’s experience, but it is this very striving for narrative coherence that I look to and critique, claiming that the desire to “fill in the gaps” for patients who have disrupted speech or for patients who are nonverbal is one that is ethically problematic and calls for attention.