and the direction in which the story is moving. A process of deliberation also has to be moral. Arthur Frank points out that “everyone involved in a patient’s care needs to know what story everyone else is telling” and that “approval of others’ stories is not necessary, but plausibility and respect are essential.” The social enterprise of moral deliberation requires transparency and respect along with values such as tolerance, humility, sincerity, and flexibility. That process should support, not disfranchise, patients and families and should produce a uniform, shared understanding of the situation and how to handle it. Most importantly, the patient’s story needs to be heard because listening to a story affirms the individuality and worthiness of the story and the person telling the story. • Barry Hoffmaster University of Western Ontario DOI: 10.1002/hast.303
u How
NarrativeBased Approaches Distort Medical Decision-Making
Several essays in Narrative Ethics: The Role of Stories in Bioethics highlighted the important role for narrative approaches in enhancing understanding of the emotional and psychological landscapes of patients and their families. These essays showed how use of narratives results in a deeper appreciation and a greater empathy for a patient’s plight and struggles. They also argued that narratives should form the basis for decisions made by patients and their surrogates when faced with the complexities of critical illness and end of life. As a physician, I worry that narrative-based approaches may actually at times promote decisions and resolutions that are at odds with the best interests of the patient. My overriding concern is that an exclusively narrative-based approach has the potential to significantly distort the medical decision-making process. I am not arguing that this is 6 HASTIN G S C E N T E R R E P ORT
unique to narrative-based approaches. Rather, it is my position that with a narrative approach, there is a greater propensity for distortions to occur. Three types of distortions are, I believe, the most concerning. As I address each of these, my intent is not to dismiss the need for and usefulness of patient’s stories but instead to provide a cautionary perspective on the use of narratives as a tool to reach medical decisions. First narrative approaches may conflict with the physician’s role and may enhance the possibility of bad decisions at the end of life. There are fundamental differences between how physicians and narrativists approach difficult medical decisions. This divergence is most evident when complex medical decisions
Since narratives may lead to decisions at odds with what is medically appropriate, “bad” decisions may occur that actually increase patient suffering and harm. are being rendered in order to define goals of care at the end of life. In this circumstance, the strict narrativist is agnostic and seeks a resolution based on the themes and arc of the patient’s story. In contrast, the physician is duty bound to not be agnostic since he or she seeks a resolution that is based on the patient’s prognosis, medical literature, professional experience, and what ultimately can be achieved realistically. Since narratives may lead to decisions at odds with what is medically appropriate, “bad” decisions may occur that actually increase patient suffering and harm. An unfortunate yet common example is ongoing aggressive care of patients with widespread metastatic cancer who die on ventilators in intensive care units because this “ending” is allegedly consistent with how the patients lived. Honoring certain narratives may thus be at the expense of beneficence.
Second, a thematic patient narrative may not exist. People’s lives are commonly fragmented; as a result, their stories may not contain clear-cut themes to guide medical decision-making. It is also the case that the complicated and rich experiences of a single person’s life may contain multiple and conflicting themes. If one believes, as many narrativists do, that a distinct narrative can be elucidated, the conception of “false” themes may thus unwittingly occur when one tries to make sense of a patient’s life story. The concern here is that this can lead to prejudiced medical decision-making. An all-too-frequent example is the claim, based on a preconceived interpretation of the narrative conveyed, that a patient is a “fighter and would never give up.” This presumed theme is then used to substantiate a physician’s own unwillingness to stop treatment. In my opinion, the creation and content of these “false” themes are motivated by the complexities and needs of a countertransference-like process, akin to what occurs in psychotherapy. While this is potentially true for all engagements with patients and their families, I worry that the relationship of the narrativist to his or her subject may be particularly prone to this type of bias. This may be the case because the interpretive literary sensibility that characterizes the narrativist has many features of the psychotherapist temperament. Finally, narratives derived from surrogates may obfuscate and cause a loss of focus on the patient. Because many patients are extremely sick, we use their surrogates to make critical decisions. Surrogates are also the source of patients’ narratives. One concerning possibility is that key decisions may be driven more by what we hear from surrogates than by what is best for the patient. No doubt, unraveling the psychological complexities of surrogates’ narratives sheds an important light on how to help families and patients cope. Without a skepticism and sensitivity to the potential insidious self-interest and harmful motives of a surrogate’s narrative, however, one could readily lose focus and misinterpret the real desires May-June 2014
and interests of the patient. One has to be vigilant not only about the veracity and motivation of a narrative but also about whether the right narrative is being used. An example is in the case of a surrogate who “won’t let go” of a dying terminally ill parent due to a complex and overwhelming sense of guilt over their relationship. While the surrogate’s narrative in such a situation might be powerful, it should not dissuade attempts to promote decisions focused on what is best for the patient. • Alan Fine Boston University DOI: 10.1002/hast.304
the author replies t I am relieved that Dr. Fine articulated some of the concerns and questions that perhaps many readers might harbor about the narrative processes that accompany clinical work. I will organize my thoughts around three perceptions about narrative ethics that surface in his response to the special report. To preface with a textual comment on the response itself, I am impressed with the underlying sadness of this text. The writer laments that there are no ways for the physician to know his or her duty, much less fulfill it. The pressures and counter-pressures from patients, surrogates, and colleagues are as a maze instead of a labyrinth, with dead ends, traps, and no destination in sight. If only there were some “real” out there against which to measure and judge our
May-June 2014
actions. Fine’s letter to the editor is, I believe, an eloquent reflection of the plight and struggles not only of the dying patient but of all of us who have chosen to live our lives around sick and dying people, doing what we can, giving what we have, and, to borrow the language of Henry James, working in the dark. Narrative methods help to understand emotional and psychological aspects of clinical cases. Indeed, they do. These aspects are not separable, however, from physiological or structural or historical or economic or moral ones. One of the powerful dividends of narrative training for the clinician is to equip that person with cognitive, textual, and interpretive skills to discern the permeability among and intersection of all these. To consider one as if separable from the others is itself a source of distortion, and to reserve narrative action for only one of them is squandering the goods. A story is a simple thing. Fine proposes that the narrative approach forces the “themes and arc of the patient’s story” onto decision-making “agnostically,” leading to errors in judgment and prevention of the fulfillment of duty. I wonder if we narrativists have oversimplified the concept of the story. When one person tells another person that something happened (Barbara Herrnstein Smith’s definition of narrative), there are no red-flagged themes and arcs. In the course of the narrating, the teller comes to expose and, with the skilled contribution of the listener, sometimes to recognize the meaning or
the implications of the narrative being told. There is no preexisting “theme” or “arc” at all. This is why the narrating must be so expertly received. It may more be the case that the form of cognitive action that we physicians undertake in diagnosing according to preexisting categories with well-worn algorithmic paths of thought are more susceptible to the agnostic error than other means of thinking through muddle. Narratives obfuscate. The more skilled a reader becomes, the more experienced in decoding complex texts, and the more astutely perceptive of nuance and contradiction, the less likely the belief that there is one and only one narrative to be elucidated as the focus of action. This distinguishes narrative knowledge from the more restrictive forms of cognition that we also bring to the bedside, when we wonder about the number of milli-equivalents of potassium per liter of serum. For the patient giving the account of the illness, likewise there are contradictions, temporal dislocations, disagreements with self, ambiguities, ironies, subtexts, and the unsaid. The listener who operates under the banner of “the patient is a fighter and would never give up” needs more narrative training. I hope these comments aid in widening the conversations we all crave around these issues of doing good and caring for the ill. • Rita Charon Columbia University DOI: 10.1002/hast.305
H AS TI N GS C E N TE R RE P O RT
7
u How
NarrativeBased Approaches Distort Medical Decision-Making
Several essays in Narrative Ethics: The Role of Stories in Bioethics highlighted the important role for narrative approaches in enhancing understanding of the emotional and psychological landscapes of patients and their families. These essays showed how use of narratives results in a deeper appreciation and a greater empathy for a patient’s plight and struggles. They also argued that narratives should form the basis for decisions made by patients and their surrogates when faced with the complexities of critical illness and end of life. As a physician, I worry that narrative-based approaches may actually at times promote decisions and resolutions that are at odds with the best interests of the patient. My overriding concern is that an exclusively narrative-based approach has the potential to significantly distort the medical decision-making process. I am not arguing that this is 6 HASTIN G S C E N T E R R E P ORT
unique to narrative-based approaches. Rather, it is my position that with a narrative approach, there is a greater propensity for distortions to occur. Three types of distortions are, I believe, the most concerning. As I address each of these, my intent is not to dismiss the need for and usefulness of patient’s stories but instead to provide a cautionary perspective on the use of narratives as a tool to reach medical decisions. First narrative approaches may conflict with the physician’s role and may enhance the possibility of bad decisions at the end of life. There are fundamental differences between how physicians and narrativists approach difficult medical decisions. This divergence is most evident when complex medical decisions
Since narratives may lead to decisions at odds with what is medically appropriate, “bad” decisions may occur that actually increase patient suffering and harm. are being rendered in order to define goals of care at the end of life. In this circumstance, the strict narrativist is agnostic and seeks a resolution based on the themes and arc of the patient’s story. In contrast, the physician is duty bound to not be agnostic since he or she seeks a resolution that is based on the patient’s prognosis, medical literature, professional experience, and what ultimately can be achieved realistically. Since narratives may lead to decisions at odds with what is medically appropriate, “bad” decisions may occur that actually increase patient suffering and harm. An unfortunate yet common example is ongoing aggressive care of patients with widespread metastatic cancer who die on ventilators in intensive care units because this “ending” is allegedly consistent with how the patients lived. Honoring certain narratives may thus be at the expense of beneficence.
Second, a thematic patient narrative may not exist. People’s lives are commonly fragmented; as a result, their stories may not contain clear-cut themes to guide medical decision-making. It is also the case that the complicated and rich experiences of a single person’s life may contain multiple and conflicting themes. If one believes, as many narrativists do, that a distinct narrative can be elucidated, the conception of “false” themes may thus unwittingly occur when one tries to make sense of a patient’s life story. The concern here is that this can lead to prejudiced medical decision-making. An all-too-frequent example is the claim, based on a preconceived interpretation of the narrative conveyed, that a patient is a “fighter and would never give up.” This presumed theme is then used to substantiate a physician’s own unwillingness to stop treatment. In my opinion, the creation and content of these “false” themes are motivated by the complexities and needs of a countertransference-like process, akin to what occurs in psychotherapy. While this is potentially true for all engagements with patients and their families, I worry that the relationship of the narrativist to his or her subject may be particularly prone to this type of bias. This may be the case because the interpretive literary sensibility that characterizes the narrativist has many features of the psychotherapist temperament. Finally, narratives derived from surrogates may obfuscate and cause a loss of focus on the patient. Because many patients are extremely sick, we use their surrogates to make critical decisions. Surrogates are also the source of patients’ narratives. One concerning possibility is that key decisions may be driven more by what we hear from surrogates than by what is best for the patient. No doubt, unraveling the psychological complexities of surrogates’ narratives sheds an important light on how to help families and patients cope. Without a skepticism and sensitivity to the potential insidious self-interest and harmful motives of a surrogate’s narrative, however, one could readily lose focus and misinterpret the real desires May-June 2014
and interests of the patient. One has to be vigilant not only about the veracity and motivation of a narrative but also about whether the right narrative is being used. An example is in the case of a surrogate who “won’t let go” of a dying terminally ill parent due to a complex and overwhelming sense of guilt over their relationship. While the surrogate’s narrative in such a situation might be powerful, it should not dissuade attempts to promote decisions focused on what is best for the patient. • Alan Fine Boston University DOI: 10.1002/hast.304
the author replies t I am relieved that Dr. Fine articulated some of the concerns and questions that perhaps many readers might harbor about the narrative processes that accompany clinical work. I will organize my thoughts around three perceptions about narrative ethics that surface in his response to the special report. To preface with a textual comment on the response itself, I am impressed with the underlying sadness of this text. The writer laments that there are no ways for the physician to know his or her duty, much less fulfill it. The pressures and counter-pressures from patients, surrogates, and colleagues are as a maze instead of a labyrinth, with dead ends, traps, and no destination in sight. If only there were some “real” out there against which to measure and judge our
May-June 2014
actions. Fine’s letter to the editor is, I believe, an eloquent reflection of the plight and struggles not only of the dying patient but of all of us who have chosen to live our lives around sick and dying people, doing what we can, giving what we have, and, to borrow the language of Henry James, working in the dark. Narrative methods help to understand emotional and psychological aspects of clinical cases. Indeed, they do. These aspects are not separable, however, from physiological or structural or historical or economic or moral ones. One of the powerful dividends of narrative training for the clinician is to equip that person with cognitive, textual, and interpretive skills to discern the permeability among and intersection of all these. To consider one as if separable from the others is itself a source of distortion, and to reserve narrative action for only one of them is squandering the goods. A story is a simple thing. Fine proposes that the narrative approach forces the “themes and arc of the patient’s story” onto decision-making “agnostically,” leading to errors in judgment and prevention of the fulfillment of duty. I wonder if we narrativists have oversimplified the concept of the story. When one person tells another person that something happened (Barbara Herrnstein Smith’s definition of narrative), there are no red-flagged themes and arcs. In the course of the narrating, the teller comes to expose and, with the skilled contribution of the listener, sometimes to recognize the meaning or
the implications of the narrative being told. There is no preexisting “theme” or “arc” at all. This is why the narrating must be so expertly received. It may more be the case that the form of cognitive action that we physicians undertake in diagnosing according to preexisting categories with well-worn algorithmic paths of thought are more susceptible to the agnostic error than other means of thinking through muddle. Narratives obfuscate. The more skilled a reader becomes, the more experienced in decoding complex texts, and the more astutely perceptive of nuance and contradiction, the less likely the belief that there is one and only one narrative to be elucidated as the focus of action. This distinguishes narrative knowledge from the more restrictive forms of cognition that we also bring to the bedside, when we wonder about the number of milli-equivalents of potassium per liter of serum. For the patient giving the account of the illness, likewise there are contradictions, temporal dislocations, disagreements with self, ambiguities, ironies, subtexts, and the unsaid. The listener who operates under the banner of “the patient is a fighter and would never give up” needs more narrative training. I hope these comments aid in widening the conversations we all crave around these issues of doing good and caring for the ill. • Rita Charon Columbia University DOI: 10.1002/hast.305
H AS TI N GS C E N TE R RE P O RT
7
