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Journal of Evaluation in Clinical Practice ISSN 1365-2753
Narrative medicine and decision-making capacity Greg Mahr MD Assistant Clinical Professor, Director of Consultation Liaison Psychiatry, Henry Ford Health System, Wayne State University, Detroit, MI, USA
Keywords capacity, ethics, narrative medicine Correspondence Dr. Greg Mahr Henry Ford Hospital 2799 West Grand Blvd Detroit, MI 48202 USA E-mail: [email protected] Accepted for publication: 2 March 2015
Abstract Rationale, aims and objectives The author proposes a new model for the assessment of decision-making capacity based on the principles of narrative medicine. The narrative method proposed by the author addresses the hidden power realtionships implicit in the current model of capacity assessment. Methods Sample cases are reviewed using the traditional model in comparison with the narrative model. Results Narrative medicine provides an effective model for the assessment of decisionmaking capacity. Conclusions Deficiencies in the traditional model capacity assessment can be effectively addressed using narrative strategies.
doi:10.1111/jep.12357
Introduction While we typically think of medical decisions as clinical, they can involve legal and philosophical issues as well. One example is the assessment of competency or decision-making capacity in patients. When a patient refuses a recommended medical or surgical intervention and seems to display confused thinking, he may need to be assessed for the capacity to make medical decisions. The assessment of decision-making capacity involves inferring from a patient’s words and actions his mental state and thought processes as well as making a judgment about whether those thought processes are appropriate or adequate. How is that judgment made? Such a judgment is not a purely clinical one, complex philosophical issues are involved. To judge whether or not a person has decision-making capacity is different in kind than judging whether or not a person has pneumonia. Is the current model for assessing decision-making capacity adequate or are covert assumptions about power and authority embedded within it which make it unacceptable? These issues deeply affect the lives of our most vulnerable patients and may affect whether they go home or go to a nursing home, or whether they have a surgical intervention such as an amputation or do not. Narrative medicine is a medical care model which insists on the primacy of the patient’s narrative or story in the doctor–patient interaction. The plot, structure and style of the patient’s story as he or she presents it is at the centre of the clinical encounter in narrative medicine. Narrative medicine, with
its overt rejection of authoritarian models and its acknowledgement of the presence of disparate but concurrently valid viewpoints, can illuminate the issue of capacity assessment because it explicitly recognizes the power and authority relationships involved in the clinical encounter. Furthermore, a narrative assessment, because it does not draw inferences about the mental state of the person being evaluated, is more objective than the traditional assessment of capacity.
The traditional model The traditional model for assessing decision-making capacity is well described in a classical article by the forensic psychiatrist Appelbaum [1]. To be judged to have decision-making capacity patients must: (1) understand the relevant information about proposed treatment; (2) appreciate their current medical situation and its implications; (3) use reason to make a decision; and (4) communicate their choice consistently. The patient must be able to describe what the doctor wants to do, why he wants to do it, why the doctor thinks it is important and why he, the patient, in a consistent way, disagrees with the doctor. The traditional model is doctor-centred rather than patient-centred. The covert narrative imbedded in the traditional model centres on the doctor and whether the doctor is being understood. In the traditional model, if the patient understands the doctor he should be doing what the doctor wants him to do; if he is not doing that he has to have an explanation as to why in order to be considered competent.
Journal of Evaluation in Clinical Practice 21 (2015) 503–507 © 2015 John Wiley & Sons, Ltd.
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To give a common example, a patient may have a gangrene of the foot and the treatment team may be recommending an amputation. If the patient refuses to have an amputation the team may request an assessment of decision-making capacity. A psychiatric consultant would then see the patient and assess the patient’s decision-making capacity. To be considered to have decisionmaking capacity, the patient would need to be able to describe that ‘the doctors want to cut my foot off because it is infected and they say I might die if it’s not cut off’ (criteria one and two). The patient would need to express a consistent reason for his or her refusal. This can be a bad reason from the doctor’s point of view. ‘They told my uncle Joe the same thing; he never had surgery and he’s fine’ (criteria 3 and 4). Even decisions that may seem ‘bad’ are an appropriate expression of patient autonomy.
Discomfort with the traditional model Certain uncomfortable assumptions are embedded within the traditional model of competency assessment. First of all, there is the assumption of a single truth which the patient acknowledges or fails to acknowledge. Second of all, the doctor expert has special access to that truth. There is a gross imbalance of power between the patient and the doctor. Only the patient faces the prospect of amputation. The doctor has the power, granted by society, to dismember the patient. The doctor also the power to decide whether the patient has the capacity to agree to be dismembered. While this power imbalance is a necessary part of the clinical relationship, the implications of that power imbalance are not fully acknowledged or addressed in the traditional model. The importance of the power relationships in medicine began to be recognized in the 1960s and 1970s [2]. Abuses of power by doctors were made public, especially in the case of the Tuskegee syphilis study. In that study hundreds of African–American men were denied treatment for syphilis for decades so that the natural course of the infection could be observed. Such egregious abuses of power led to the rise of the field of medical ethics, the need for informed consent and consequently the need for capacity assessment. Traditional medical ethics arises out of the realization that medicine involves an unequal, potentially exploitative doctor– patient relationship and the traditional model for capacity assessment arises out of this understanding. Brody describes this type of medical ethics as decisional ethics [3]. In decisional ethics, people who do not know each other face discrete choices over a limited time frame, such as what occurs in tertiary care settings. The patient described earlier, who needed an amputation, was seen by hospitalists in such a setting who had no prior knowledge of his story. In contrast, relational ethics involves ongoing and evolving human interactions. The decisional ethical issue of ‘amputate or not’ might be replaced in a primary care setting by relational ethics, which involves a complex and evolving narrative of education, family involvement and exploration of resistances. Besides the complex issues related to the imbalance of power, the traditional model involves inferences about the internal mental state of a patient. Three of the four criteria involve such inferences. How exactly do we judge if a person understands information, appreciates a situation and reasons about treatment options? Who makes that decision? Although extremely helpful, the traditional criteria created an illusion of objectivity. Subjective biases can distort the accuracy of our inferences about another person’s 504
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mental state. These not only include traditional sources of bias such as race, gender and socio-economic status, but also patientspecific variables such as anger or hostility. Depending on the demeanor and interpersonal style of the examiner, the angry patient demanding discharge is likely to be either rashly assessed to be competent so that he leaves the hospital and is ‘gotten rid of’ or rashly assessed to lack decision-making capacity so that he can be controlled by a medical team that is angry and frustrated.
The narrative response Narrative medicine explicitly addresses some of the covert assumptions that occur in clinical medicine as a result of the inequalities of the role between patient and doctor. Narrative medicine explicitly addresses power issues and allows for multiple equally valid versions of truth. Narrative medicine has been an effective and powerful tool in reshaping medical practice. In this paper, it is applied to the assessment of decision-making capacity.
What is narrative medicine? Narrative medicine is a philosophy and a skill set. It is a contemporary framework for energizing health care. Some of the pioneering work in narrative was performed by clinicians, such as Rita Charron, who is also a literary scholar. She realized that one of the primary ways that we as humans encounter ourselves and each other and deal with illness and suffering is through story or narrative. As we frame experience as narrative, we imbue it with meaning. To be effective in helping patients, medicine must acknowledge and participate in the process of narrative. This narrative aspect of medicine has been recognized from its very origins. Hippocrates wrote that ‘the sort of disease a person has is much less important than the sort of person that has the disease’. To experience, with a patient, the story of their illness is to connect with them personally and meaningfully. Psychiatry has been the field of medicine that from its very origins has acknowledged, although sometimes in a disguised manner, the narrative core of human experience. Psychiatry has always faced the question of its true nature. Is psychiatry a hermeneutic discipline similar to literary criticism or history or is it a field of science? This tension between the narrative and positivistic dimensions of psychiatry has been present since Freud. Phillips has shown that issues of narrative and narrative identity have been present in the earliest of Freud’s work [4]. Freud realized he had to ‘abandon the treatment of organic nervous disease’ to attempt to understand his patient’s experiences. His first major work was The Interpretation of Dreams, in which dreams were viewed as meaningful creative productions to be decoded and understood. Freud explicitly chose not to pursue more thoroughly the narrative strain in his own work. ‘I have not always been a psychotherapist. Like other neuropathologists, I was trained to employ local diagnosis and electro-prognosis, and it still strikes me as strange that the case histories I write should read like short stories and that, as one might say, they lack the serious stamp of science’ [5]. Jung explicitly invoked narrative theory. ‘A psychoneurosis must be understood as the suffering of a human being who has not discovered what his life means for him. The doctor who realizes this truth sees a new territory opened up before him which he
© 2015 John Wiley & Sons, Ltd.
G. Mahr
opens with the greatest hesitation. He is now confronted with the necessity of conveying to his patient the healing fiction, the meaning that quickens – for it is this that the patient longs for, over and above all that reason and science can give him’ [6]. The covert narrative themes present in psychoanalysis from its beginnings are made explicit in the work of a newer generation of analysts such as Schafer. He explicitly rejects any notion that psychoanalysis is a scientific discipline, insisting that is a purely narrative and hermeneutic discourse [7]. The analyst attends to the patient’s story, empathizes and serves as a holding container for elements of the patient’s story that he cannot himself yet bear. At the proper time, the analyst interprets; that is, reframes and recontextualizes the patient’s narrative, incorporating drives, impulses and past material that enrich the story. Narrative medicine affirms and mobilizes people’s prerogative to challenge, to deconstruct dominant ideas that claim to be the truth and plot alternative stories. Human experience is captured by story; different stories can be articulated, the choice of narrative path enriches or constricts freedom, choice and meaning. Narratives are neither true nor false, just as great works of fiction are neither true nor false, but rich and meaningful. Central to this outlook, patients are persons seeking help with their health. They are not their symptoms or symptom clusters, not their diagnoses or their illnesses. Patients are persons who come to our offices with expectations, fears and hopes. Narrative is the core human way of giving meaning to experience. People act on the basis of meaning, the constellation of ideas and interpretations people have about what is going on. Narratives organize experience; they are shaping and forming tools. Daily and primal, the stories we tell and hold about our lives inform and reflect meaning we create and discover in our lives. Telling the story allows us to express what is significant in our lives, to communicate how things matter to and for us. Narrative medicine also more explicitly acknowledges the role of power in the doctor–patient relationship. The doctor has power and privilege in relation to the patient. The narrative stance would acknowledge this reality and make it as explicit and overt as possible. There are two types of privilege, privilege of knowledge and privilege of power, and they are separable. The privilege of knowledge is a factual reality, based on the doctor’s superior knowledge of medicine. The privilege of power is a social role granted to the doctor by the patient and society. The narrative analysis of a clinical situation can be complex and multilayered. Our internal narrative is the story we tell ourselves about our own actions. Parts of our own story we may not even be aware of, hidden assumptions or metanarratives based on our past or family experiences colour the story we tell ourselves. In other words, other people’s stories can affect our story. Our stories become more genuine and more authentic as they are more truly our own and as we become aware how other stories affect ours. The traditional assessment of decision-making capacity, from a narrative point of view, involves a metanarrative where the doctor is the source of knowledge and wisdom in the clinical situation. The patient responds appropriately or inappropriately to the doctor. Because this metanarrative is covert, there are elements of inauthenticity in a traditional narrative analysis. The traditional capacity assessment pretends that capacity decisions are objective
© 2015 John Wiley & Sons, Ltd.
Narrative medicine and capacity
and unaffected by power relationships, but we really know that they are not. A narrative assessment avoids or makes explicit this metanarrative and thus avoids this element of inauthenticity.
The assessment of capacity from a narrative perspective What might a narrative assessment of decision-making capacity look like? Most importantly, the multiple narratives present in a complex clinical situation must be given equal consideration. The patient’s narrative must be given equal weight to the doctor’s. Is that really possible without reference to the ‘truth’, without picking one story to be the real story? How do we decide whether a patient narrative demonstrates a lack of capacity? A narrative assessment of decision-making capacity can answer those questions. Narrative criteria for the assessment of competency would encompass the traditional ones, but avoid some of the philosophical problems contained within them. They would examine the patient’s story, but without trying to infer the patient’s mental state. I propose the following narrative criteria for decisionmaking capacity: a patient with decision-making capacity will present a narrative that is (1) coherent; (2) acknowledges the doctor’s narrative and the privilege of knowledge that is part of the doctor’s role; (3) consistent and self-authored; and (4) flexible and potentially open to new data ideas and interpretations. These criteria were chosen for several reasons. They avoid covert judgments about a person’s internal mental state. They acknowledge the special role of the doctor’s knowledge but without asserting that the medical team has special access to the truth. Most importantly, they allow for a clear and practical approach to the assessment of decision-making capacity without the hidden problems associated with the traditional model. In deference to the narrative mode of thinking and experience, the use of these criteria is best illustrated by simple case vignettes. Each case vignette will be described by traditional, then narrative criteria. As traditional competency assessments are the current standard, narrative assessments should arrive at the same conclusions as traditional assessments, but without the ethical and philosophical difficulties embedded within the traditional assessment.
Case 1: The competent bad decision A 22-year-old man develops a cardiac arrhythmia after a cocaine binge. The medical team advises a treatment plan involving continued hospital stay and trial of anti-arrhythmic drugs. The patient refuses, ‘I want to go home and use crack’. Upon further interview, that patient could describe the medical recommendations accurately, could voice that his decision might be life threatening, but still insist on the primacy of his wishes, ‘I want to sign myself out!’ According to traditional criteria, the patient had decisionmaking capacity. He understood the relevant information, appreciated his medical situation and its consequences. He seemed to weigh his options and use reason to make his decision, although his conclusion was not one most of us would share, and he was certainly consistent in his wishes. He was allowed to sign out against medical advice, but lingering worries troubled the treatment team’s sleep. Being so young, did he ‘really’ understand what death and disability meant? What are 505
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the full implications of the cocaine use? He was not intoxicated or in withdrawal, but did the love for the drug and its pharmacological power cloud his judgment in such a way that he should have had another decision maker? By the narrative criteria, this patient would also be competent. He presents a coherent, consistent and self-authored narrative that acknowledges the doctor’s narrative. He could understand and acknowledge other points of view, but did not agree with them. As in the narrative model the conclusion was drawn without inferences into the patient’s mental state, we can feel less doubt about our conclusion.
Case 2: The incompetent bad decision A 54-year-old chronic schizophrenic and heroin user who lived on his own and functioned adequately developed heart failure and peripheral oedema. He was found to have bacterial endocarditis requiring surgical repair of his valve. He refused. He insisted he only wanted treatment for his enlarged scrotum. His scrotum was indeed massively oedematous. When any member of the medical team came to his room, he would expose his scrotum and angrily complain that no one would listen to him or help him. Multiple attempts to explain the complex connection between his heart valve, the heart failure and the enlarged scrotum were met with derision as he exclaimed, ‘you doctors are just trying to get money!’ If he could have said, the ‘doctors think that operating on my heart will help take the fluid out of my scrotum, but I don’t agree for such and such a reason’, the outcome might have been different. He was judged not to have decision-making capacity because he could not appreciate the significance of his medical condition. Reluctantly, surgery was performed against his will after a guardian was obtained who provided consent. The patient’s perspective and wishes were consistent. Doctors are liars and crooks. This was confirmed by the fact that they wanted to do unnecessary heart surgery instead of ‘draining’ his scrotum. In the first case, the patient was felt to be a competent decision maker because he could acknowledge the medical knowledge of the medical team, but did not relinquish his power. In this case, the patient was judged not to be comprehending of the medical significance of his situation. He could not understand the true picture of medical reality that the doctors were presenting. A narrative analysis of the case would be somewhat different. The narrative model avoids the complex inference that the patient did not understand the medical significance of his situation, as well as the presumption of the ‘truth’ of the medical model. This patient would not be found to be competent by the narrative model because he could not acknowledge the privilege of knowledge that is part of the doctor’s role and he was not open to other data and interpretation. Although the patient’s narrative was coherent, consistent and self-authored, it did not acknowledge the privilege of knowledge that is part of the doctor’s role and was not open to new data. Thus, he failed criteria 2 and 4 of the narrative criteria. Psychologically, we might say that the patient’s internal narrative of his current medical situation was coloured by a fixed and complex metanarrative. In this unconscious metanarrative, he is alone and abandoned. All people, especially doctors, pretend to 506
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help, but actually mean to trick and exploit him. It is the persistence of this metanarrative that clouds his decision making.
Case 3: The inconsistent decision maker A patient in the intensive care unit (ICU) seems to have problems deciding on code status. When I talk to him as I perform a psychiatric consultation, he is clear, coherent and seems to grasp the complexities of his medical situation. He wants to be a full code, meaning that full resuscitation would be performed in the event his heart should stop. When I talk to his nurse, the nurse listens patiently to my rationale for saying that he has decision-making capacity, but says, ‘You should have talked to him an hour ago, after he talked to the ICU team instead of the oncology team. Then he was saying he did not want to be a full code.’ I spoke to the patient again, reminding him of his conversation with the ICU team; he again changed his mind, saying he did not want to be a full code. I did not present the patient with any new information, when he was reminded of the views and attitude of the ICU team as he recalled his conversation with them he changed his view to be in accord with what he perceived as theirs. The traditional view of competency assessment would find this patient not competent because he could not be consistent. A narrative view perspective would concur with that conclusion, but for slightly different reasons. Using the concept of the metanarrative, it seems that the ICU team presented a covert metanarrative that it was a bad idea to be full code, whereas the oncology team presented the opposite metanarrative. The patient would be convinced by each and would change his mind depending whom he had talked to last. In the final analysis, the patient seemed not to be the author of his own story. It was not only that he was changing his story, it was that he was not writing it himself. Not only was his story not consistent, it was not self-authored, thus he failed criteria 3 of the narrative criteria.
Discussion Narrative medicine provides a new and effective model for assessing decision-making capacity in patients. While the narrative model comes to conclusions consistent with those of the traditional model, it avoids some of the troubling covert assumptions of the traditional model. Furthermore, I would suggest that the clinician assessing the decision-making capacity of a patient actually uses those narrative criteria without thinking about or realizing it. We know that we cannot really judge whether a person can reason or understand, when we are honest with ourselves, we know that all we can do is listen to and try to understand their story. In using the traditional model, we have to pretend to ourselves that we can understand another person’s mental state when we know that we really cannot. Using narrative criteria helps make our internal metanarrative more authentic. In this paper, we develop a new model for the assessment of decision-making capacity based on narrative theory. This new model allows for an accurate assessment of decision-making capacity without the ethical and philosophical problems embedded in the traditional model. Further studies might explore the reliability of capacity assessment using the narrative model.
© 2015 John Wiley & Sons, Ltd.
G. Mahr
References 1. Appelbaum, P. S. (2007) Assessment of patients’ competence to consent to treatment. The New England Journal of Medicine, 357, 1834–1840. 2. Charon, R. (2006) Narrative Medicine, pp. 204–205. New York: Oxford Press. 3. Brody, H. (1987) Stories of Sickness, p. 172. New Haven: Yale University Press.
© 2015 John Wiley & Sons, Ltd.
Narrative medicine and capacity
4. Phillips, J. (1991) Hermeneutics psychoanalysis: review and reconsideration. Psychoanalysis and Contemporary Thought, 14, 371–424. 5. Freud, S. (1895) Studies on Hysteria: The Standard Edition of the Complete Psychological Works of Sigmund Freud, Vol. 2, p. 160. London: Hogarth Press. 6. Jung, C. G. (1955) Modern Man in Search of a Soul. New York: Harcourt Harvest. 7. Schafer, R. (1983) The Analytic Attitude. New York: Basic Books.
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Journal of Evaluation in Clinical Practice ISSN 1365-2753
Narrative medicine and decision-making capacity Greg Mahr MD Assistant Clinical Professor, Director of Consultation Liaison Psychiatry, Henry Ford Health System, Wayne State University, Detroit, MI, USA
Keywords capacity, ethics, narrative medicine Correspondence Dr. Greg Mahr Henry Ford Hospital 2799 West Grand Blvd Detroit, MI 48202 USA E-mail: [email protected] Accepted for publication: 2 March 2015
Abstract Rationale, aims and objectives The author proposes a new model for the assessment of decision-making capacity based on the principles of narrative medicine. The narrative method proposed by the author addresses the hidden power realtionships implicit in the current model of capacity assessment. Methods Sample cases are reviewed using the traditional model in comparison with the narrative model. Results Narrative medicine provides an effective model for the assessment of decisionmaking capacity. Conclusions Deficiencies in the traditional model capacity assessment can be effectively addressed using narrative strategies.
doi:10.1111/jep.12357
Introduction While we typically think of medical decisions as clinical, they can involve legal and philosophical issues as well. One example is the assessment of competency or decision-making capacity in patients. When a patient refuses a recommended medical or surgical intervention and seems to display confused thinking, he may need to be assessed for the capacity to make medical decisions. The assessment of decision-making capacity involves inferring from a patient’s words and actions his mental state and thought processes as well as making a judgment about whether those thought processes are appropriate or adequate. How is that judgment made? Such a judgment is not a purely clinical one, complex philosophical issues are involved. To judge whether or not a person has decision-making capacity is different in kind than judging whether or not a person has pneumonia. Is the current model for assessing decision-making capacity adequate or are covert assumptions about power and authority embedded within it which make it unacceptable? These issues deeply affect the lives of our most vulnerable patients and may affect whether they go home or go to a nursing home, or whether they have a surgical intervention such as an amputation or do not. Narrative medicine is a medical care model which insists on the primacy of the patient’s narrative or story in the doctor–patient interaction. The plot, structure and style of the patient’s story as he or she presents it is at the centre of the clinical encounter in narrative medicine. Narrative medicine, with
its overt rejection of authoritarian models and its acknowledgement of the presence of disparate but concurrently valid viewpoints, can illuminate the issue of capacity assessment because it explicitly recognizes the power and authority relationships involved in the clinical encounter. Furthermore, a narrative assessment, because it does not draw inferences about the mental state of the person being evaluated, is more objective than the traditional assessment of capacity.
The traditional model The traditional model for assessing decision-making capacity is well described in a classical article by the forensic psychiatrist Appelbaum [1]. To be judged to have decision-making capacity patients must: (1) understand the relevant information about proposed treatment; (2) appreciate their current medical situation and its implications; (3) use reason to make a decision; and (4) communicate their choice consistently. The patient must be able to describe what the doctor wants to do, why he wants to do it, why the doctor thinks it is important and why he, the patient, in a consistent way, disagrees with the doctor. The traditional model is doctor-centred rather than patient-centred. The covert narrative imbedded in the traditional model centres on the doctor and whether the doctor is being understood. In the traditional model, if the patient understands the doctor he should be doing what the doctor wants him to do; if he is not doing that he has to have an explanation as to why in order to be considered competent.
Journal of Evaluation in Clinical Practice 21 (2015) 503–507 © 2015 John Wiley & Sons, Ltd.
503
Narrative medicine and capacity
To give a common example, a patient may have a gangrene of the foot and the treatment team may be recommending an amputation. If the patient refuses to have an amputation the team may request an assessment of decision-making capacity. A psychiatric consultant would then see the patient and assess the patient’s decision-making capacity. To be considered to have decisionmaking capacity, the patient would need to be able to describe that ‘the doctors want to cut my foot off because it is infected and they say I might die if it’s not cut off’ (criteria one and two). The patient would need to express a consistent reason for his or her refusal. This can be a bad reason from the doctor’s point of view. ‘They told my uncle Joe the same thing; he never had surgery and he’s fine’ (criteria 3 and 4). Even decisions that may seem ‘bad’ are an appropriate expression of patient autonomy.
Discomfort with the traditional model Certain uncomfortable assumptions are embedded within the traditional model of competency assessment. First of all, there is the assumption of a single truth which the patient acknowledges or fails to acknowledge. Second of all, the doctor expert has special access to that truth. There is a gross imbalance of power between the patient and the doctor. Only the patient faces the prospect of amputation. The doctor has the power, granted by society, to dismember the patient. The doctor also the power to decide whether the patient has the capacity to agree to be dismembered. While this power imbalance is a necessary part of the clinical relationship, the implications of that power imbalance are not fully acknowledged or addressed in the traditional model. The importance of the power relationships in medicine began to be recognized in the 1960s and 1970s [2]. Abuses of power by doctors were made public, especially in the case of the Tuskegee syphilis study. In that study hundreds of African–American men were denied treatment for syphilis for decades so that the natural course of the infection could be observed. Such egregious abuses of power led to the rise of the field of medical ethics, the need for informed consent and consequently the need for capacity assessment. Traditional medical ethics arises out of the realization that medicine involves an unequal, potentially exploitative doctor– patient relationship and the traditional model for capacity assessment arises out of this understanding. Brody describes this type of medical ethics as decisional ethics [3]. In decisional ethics, people who do not know each other face discrete choices over a limited time frame, such as what occurs in tertiary care settings. The patient described earlier, who needed an amputation, was seen by hospitalists in such a setting who had no prior knowledge of his story. In contrast, relational ethics involves ongoing and evolving human interactions. The decisional ethical issue of ‘amputate or not’ might be replaced in a primary care setting by relational ethics, which involves a complex and evolving narrative of education, family involvement and exploration of resistances. Besides the complex issues related to the imbalance of power, the traditional model involves inferences about the internal mental state of a patient. Three of the four criteria involve such inferences. How exactly do we judge if a person understands information, appreciates a situation and reasons about treatment options? Who makes that decision? Although extremely helpful, the traditional criteria created an illusion of objectivity. Subjective biases can distort the accuracy of our inferences about another person’s 504
G. Mahr
mental state. These not only include traditional sources of bias such as race, gender and socio-economic status, but also patientspecific variables such as anger or hostility. Depending on the demeanor and interpersonal style of the examiner, the angry patient demanding discharge is likely to be either rashly assessed to be competent so that he leaves the hospital and is ‘gotten rid of’ or rashly assessed to lack decision-making capacity so that he can be controlled by a medical team that is angry and frustrated.
The narrative response Narrative medicine explicitly addresses some of the covert assumptions that occur in clinical medicine as a result of the inequalities of the role between patient and doctor. Narrative medicine explicitly addresses power issues and allows for multiple equally valid versions of truth. Narrative medicine has been an effective and powerful tool in reshaping medical practice. In this paper, it is applied to the assessment of decision-making capacity.
What is narrative medicine? Narrative medicine is a philosophy and a skill set. It is a contemporary framework for energizing health care. Some of the pioneering work in narrative was performed by clinicians, such as Rita Charron, who is also a literary scholar. She realized that one of the primary ways that we as humans encounter ourselves and each other and deal with illness and suffering is through story or narrative. As we frame experience as narrative, we imbue it with meaning. To be effective in helping patients, medicine must acknowledge and participate in the process of narrative. This narrative aspect of medicine has been recognized from its very origins. Hippocrates wrote that ‘the sort of disease a person has is much less important than the sort of person that has the disease’. To experience, with a patient, the story of their illness is to connect with them personally and meaningfully. Psychiatry has been the field of medicine that from its very origins has acknowledged, although sometimes in a disguised manner, the narrative core of human experience. Psychiatry has always faced the question of its true nature. Is psychiatry a hermeneutic discipline similar to literary criticism or history or is it a field of science? This tension between the narrative and positivistic dimensions of psychiatry has been present since Freud. Phillips has shown that issues of narrative and narrative identity have been present in the earliest of Freud’s work [4]. Freud realized he had to ‘abandon the treatment of organic nervous disease’ to attempt to understand his patient’s experiences. His first major work was The Interpretation of Dreams, in which dreams were viewed as meaningful creative productions to be decoded and understood. Freud explicitly chose not to pursue more thoroughly the narrative strain in his own work. ‘I have not always been a psychotherapist. Like other neuropathologists, I was trained to employ local diagnosis and electro-prognosis, and it still strikes me as strange that the case histories I write should read like short stories and that, as one might say, they lack the serious stamp of science’ [5]. Jung explicitly invoked narrative theory. ‘A psychoneurosis must be understood as the suffering of a human being who has not discovered what his life means for him. The doctor who realizes this truth sees a new territory opened up before him which he
© 2015 John Wiley & Sons, Ltd.
G. Mahr
opens with the greatest hesitation. He is now confronted with the necessity of conveying to his patient the healing fiction, the meaning that quickens – for it is this that the patient longs for, over and above all that reason and science can give him’ [6]. The covert narrative themes present in psychoanalysis from its beginnings are made explicit in the work of a newer generation of analysts such as Schafer. He explicitly rejects any notion that psychoanalysis is a scientific discipline, insisting that is a purely narrative and hermeneutic discourse [7]. The analyst attends to the patient’s story, empathizes and serves as a holding container for elements of the patient’s story that he cannot himself yet bear. At the proper time, the analyst interprets; that is, reframes and recontextualizes the patient’s narrative, incorporating drives, impulses and past material that enrich the story. Narrative medicine affirms and mobilizes people’s prerogative to challenge, to deconstruct dominant ideas that claim to be the truth and plot alternative stories. Human experience is captured by story; different stories can be articulated, the choice of narrative path enriches or constricts freedom, choice and meaning. Narratives are neither true nor false, just as great works of fiction are neither true nor false, but rich and meaningful. Central to this outlook, patients are persons seeking help with their health. They are not their symptoms or symptom clusters, not their diagnoses or their illnesses. Patients are persons who come to our offices with expectations, fears and hopes. Narrative is the core human way of giving meaning to experience. People act on the basis of meaning, the constellation of ideas and interpretations people have about what is going on. Narratives organize experience; they are shaping and forming tools. Daily and primal, the stories we tell and hold about our lives inform and reflect meaning we create and discover in our lives. Telling the story allows us to express what is significant in our lives, to communicate how things matter to and for us. Narrative medicine also more explicitly acknowledges the role of power in the doctor–patient relationship. The doctor has power and privilege in relation to the patient. The narrative stance would acknowledge this reality and make it as explicit and overt as possible. There are two types of privilege, privilege of knowledge and privilege of power, and they are separable. The privilege of knowledge is a factual reality, based on the doctor’s superior knowledge of medicine. The privilege of power is a social role granted to the doctor by the patient and society. The narrative analysis of a clinical situation can be complex and multilayered. Our internal narrative is the story we tell ourselves about our own actions. Parts of our own story we may not even be aware of, hidden assumptions or metanarratives based on our past or family experiences colour the story we tell ourselves. In other words, other people’s stories can affect our story. Our stories become more genuine and more authentic as they are more truly our own and as we become aware how other stories affect ours. The traditional assessment of decision-making capacity, from a narrative point of view, involves a metanarrative where the doctor is the source of knowledge and wisdom in the clinical situation. The patient responds appropriately or inappropriately to the doctor. Because this metanarrative is covert, there are elements of inauthenticity in a traditional narrative analysis. The traditional capacity assessment pretends that capacity decisions are objective
© 2015 John Wiley & Sons, Ltd.
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and unaffected by power relationships, but we really know that they are not. A narrative assessment avoids or makes explicit this metanarrative and thus avoids this element of inauthenticity.
The assessment of capacity from a narrative perspective What might a narrative assessment of decision-making capacity look like? Most importantly, the multiple narratives present in a complex clinical situation must be given equal consideration. The patient’s narrative must be given equal weight to the doctor’s. Is that really possible without reference to the ‘truth’, without picking one story to be the real story? How do we decide whether a patient narrative demonstrates a lack of capacity? A narrative assessment of decision-making capacity can answer those questions. Narrative criteria for the assessment of competency would encompass the traditional ones, but avoid some of the philosophical problems contained within them. They would examine the patient’s story, but without trying to infer the patient’s mental state. I propose the following narrative criteria for decisionmaking capacity: a patient with decision-making capacity will present a narrative that is (1) coherent; (2) acknowledges the doctor’s narrative and the privilege of knowledge that is part of the doctor’s role; (3) consistent and self-authored; and (4) flexible and potentially open to new data ideas and interpretations. These criteria were chosen for several reasons. They avoid covert judgments about a person’s internal mental state. They acknowledge the special role of the doctor’s knowledge but without asserting that the medical team has special access to the truth. Most importantly, they allow for a clear and practical approach to the assessment of decision-making capacity without the hidden problems associated with the traditional model. In deference to the narrative mode of thinking and experience, the use of these criteria is best illustrated by simple case vignettes. Each case vignette will be described by traditional, then narrative criteria. As traditional competency assessments are the current standard, narrative assessments should arrive at the same conclusions as traditional assessments, but without the ethical and philosophical difficulties embedded within the traditional assessment.
Case 1: The competent bad decision A 22-year-old man develops a cardiac arrhythmia after a cocaine binge. The medical team advises a treatment plan involving continued hospital stay and trial of anti-arrhythmic drugs. The patient refuses, ‘I want to go home and use crack’. Upon further interview, that patient could describe the medical recommendations accurately, could voice that his decision might be life threatening, but still insist on the primacy of his wishes, ‘I want to sign myself out!’ According to traditional criteria, the patient had decisionmaking capacity. He understood the relevant information, appreciated his medical situation and its consequences. He seemed to weigh his options and use reason to make his decision, although his conclusion was not one most of us would share, and he was certainly consistent in his wishes. He was allowed to sign out against medical advice, but lingering worries troubled the treatment team’s sleep. Being so young, did he ‘really’ understand what death and disability meant? What are 505
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the full implications of the cocaine use? He was not intoxicated or in withdrawal, but did the love for the drug and its pharmacological power cloud his judgment in such a way that he should have had another decision maker? By the narrative criteria, this patient would also be competent. He presents a coherent, consistent and self-authored narrative that acknowledges the doctor’s narrative. He could understand and acknowledge other points of view, but did not agree with them. As in the narrative model the conclusion was drawn without inferences into the patient’s mental state, we can feel less doubt about our conclusion.
Case 2: The incompetent bad decision A 54-year-old chronic schizophrenic and heroin user who lived on his own and functioned adequately developed heart failure and peripheral oedema. He was found to have bacterial endocarditis requiring surgical repair of his valve. He refused. He insisted he only wanted treatment for his enlarged scrotum. His scrotum was indeed massively oedematous. When any member of the medical team came to his room, he would expose his scrotum and angrily complain that no one would listen to him or help him. Multiple attempts to explain the complex connection between his heart valve, the heart failure and the enlarged scrotum were met with derision as he exclaimed, ‘you doctors are just trying to get money!’ If he could have said, the ‘doctors think that operating on my heart will help take the fluid out of my scrotum, but I don’t agree for such and such a reason’, the outcome might have been different. He was judged not to have decision-making capacity because he could not appreciate the significance of his medical condition. Reluctantly, surgery was performed against his will after a guardian was obtained who provided consent. The patient’s perspective and wishes were consistent. Doctors are liars and crooks. This was confirmed by the fact that they wanted to do unnecessary heart surgery instead of ‘draining’ his scrotum. In the first case, the patient was felt to be a competent decision maker because he could acknowledge the medical knowledge of the medical team, but did not relinquish his power. In this case, the patient was judged not to be comprehending of the medical significance of his situation. He could not understand the true picture of medical reality that the doctors were presenting. A narrative analysis of the case would be somewhat different. The narrative model avoids the complex inference that the patient did not understand the medical significance of his situation, as well as the presumption of the ‘truth’ of the medical model. This patient would not be found to be competent by the narrative model because he could not acknowledge the privilege of knowledge that is part of the doctor’s role and he was not open to other data and interpretation. Although the patient’s narrative was coherent, consistent and self-authored, it did not acknowledge the privilege of knowledge that is part of the doctor’s role and was not open to new data. Thus, he failed criteria 2 and 4 of the narrative criteria. Psychologically, we might say that the patient’s internal narrative of his current medical situation was coloured by a fixed and complex metanarrative. In this unconscious metanarrative, he is alone and abandoned. All people, especially doctors, pretend to 506
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help, but actually mean to trick and exploit him. It is the persistence of this metanarrative that clouds his decision making.
Case 3: The inconsistent decision maker A patient in the intensive care unit (ICU) seems to have problems deciding on code status. When I talk to him as I perform a psychiatric consultation, he is clear, coherent and seems to grasp the complexities of his medical situation. He wants to be a full code, meaning that full resuscitation would be performed in the event his heart should stop. When I talk to his nurse, the nurse listens patiently to my rationale for saying that he has decision-making capacity, but says, ‘You should have talked to him an hour ago, after he talked to the ICU team instead of the oncology team. Then he was saying he did not want to be a full code.’ I spoke to the patient again, reminding him of his conversation with the ICU team; he again changed his mind, saying he did not want to be a full code. I did not present the patient with any new information, when he was reminded of the views and attitude of the ICU team as he recalled his conversation with them he changed his view to be in accord with what he perceived as theirs. The traditional view of competency assessment would find this patient not competent because he could not be consistent. A narrative view perspective would concur with that conclusion, but for slightly different reasons. Using the concept of the metanarrative, it seems that the ICU team presented a covert metanarrative that it was a bad idea to be full code, whereas the oncology team presented the opposite metanarrative. The patient would be convinced by each and would change his mind depending whom he had talked to last. In the final analysis, the patient seemed not to be the author of his own story. It was not only that he was changing his story, it was that he was not writing it himself. Not only was his story not consistent, it was not self-authored, thus he failed criteria 3 of the narrative criteria.
Discussion Narrative medicine provides a new and effective model for assessing decision-making capacity in patients. While the narrative model comes to conclusions consistent with those of the traditional model, it avoids some of the troubling covert assumptions of the traditional model. Furthermore, I would suggest that the clinician assessing the decision-making capacity of a patient actually uses those narrative criteria without thinking about or realizing it. We know that we cannot really judge whether a person can reason or understand, when we are honest with ourselves, we know that all we can do is listen to and try to understand their story. In using the traditional model, we have to pretend to ourselves that we can understand another person’s mental state when we know that we really cannot. Using narrative criteria helps make our internal metanarrative more authentic. In this paper, we develop a new model for the assessment of decision-making capacity based on narrative theory. This new model allows for an accurate assessment of decision-making capacity without the ethical and philosophical problems embedded in the traditional model. Further studies might explore the reliability of capacity assessment using the narrative model.
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References 1. Appelbaum, P. S. (2007) Assessment of patients’ competence to consent to treatment. The New England Journal of Medicine, 357, 1834–1840. 2. Charon, R. (2006) Narrative Medicine, pp. 204–205. New York: Oxford Press. 3. Brody, H. (1987) Stories of Sickness, p. 172. New Haven: Yale University Press.
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4. Phillips, J. (1991) Hermeneutics psychoanalysis: review and reconsideration. Psychoanalysis and Contemporary Thought, 14, 371–424. 5. Freud, S. (1895) Studies on Hysteria: The Standard Edition of the Complete Psychological Works of Sigmund Freud, Vol. 2, p. 160. London: Hogarth Press. 6. Jung, C. G. (1955) Modern Man in Search of a Soul. New York: Harcourt Harvest. 7. Schafer, R. (1983) The Analytic Attitude. New York: Basic Books.
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