REVIEW URRENT C OPINION
Narrative ethics in the field of oncology Dominique Lossignol
Purpose of review To evaluate the application of narrative within medical practice. Illness like cancer constitutes a biographical disruption that occurs several times during the disease, from diagnosis to complications and treatments. This review analyzes the interest of narrative ethics in medicine with a focus on cancer. Recent findings The field of narrative ethics in medicine has emerged from a confluence of humanities, contemporary narratology, literature and social sciences. Although there is a growing literature on this topic, little has been written on an oncology setting. This article is more a personal consideration on the subject than a classical review of the literature. Summary The advent of bioethics has given considerable insight into the practice of medicine, and it would be inconceivable to return to a paternalistic practice that ignores the will of the patient. Like procedural ethics of discussion, and in complement with principlism, narrative ethics promotes constructive communication between patients and caregivers. Keywords cancer, communication, narrative ethics
INTRODUCTION This article evaluates the interest of narrative ethics in medical practice. The field of narrative ethics in medicine has emerged from a confluence of humanities, contemporary narratology, literature and social sciences. A special focus will be made in the field of oncology.
ETHICS The concept of bioethics is recent, being part of a line of thought emerging in the 1970s that aimed to study discourse, research and developments in biology and medicine. Bioethics appeared at a time when the all-mighty power of science was being questioned and when the subject of study – the patient – became the center of discussion. Bioethics is the fruit of ethical questioning that arose in the aftermath of World War II and during the Nuremberg Trials, which led to the first code of ethics related to experimentation with humans and was followed by the Declaration of Helsinki and The Belmont Report. Originating in the United States, bioethics rapidly found resonance in Europe where philosophers, legal experts, researchers and physicians understood the significance of the movement. It is unique in its
multidisciplinarity, inviting the different players to define their points of view, to listen actively to the arguments in order to reach a discursive and practical conclusion. The starting point for discussion is a particular case that poses ethical questions, rather than dogma or pre-established rules and not a systematic use of dogma. One of the major theories in bioethics is Principlism, presented in several articles then in a book by Beauchamp and Childress [1]. The Principles of Medical Ethics was published in 1979 and has been well known ever since. This work draws its importance by applying axiomatic priority to four moral principles in the resolution of ethical conflicts: respect for the autonomy of the individual (respect the personal views, actions and choices of the other), beneficence (act only for the benefit of the other), nonmaleficence (avoid actively or passively causing harm) and distributive justice (treat people fairly at any time). Institut Jules Bordet, Brussels, Belgium Correspondence to Dominique Lossignol, Associate Professor and Department Head, Institut Jules Bordet, 1000 Brussels, Belgium. Tel: +32 2 541 33 32; e-mail: [email protected] Curr Opin Oncol 2014, 26:385–388 DOI:10.1097/CCO.0000000000000085
1040-8746 ß 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
www.co-oncology.com
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Supportive care
KEY POINTS Ethics is not only a collection of moral concepts. Narrative ethics offers new insight in cancer patient care. Narrative ethics goes closer to specific cases. Applied ethics goes beyond moral philosophy.
However honorable, these principles sometimes appear to be too broad to resolve some new ethical situations or have even undermined some quite ordinary situations. The universality of such principles has been challenged by other currents of ethical thought, such as procedural justice, the ethics of care and narrative ethics.
NARRATIVE ETHICS Narrative ethics embodies the postmodern criticism of reason and accentuates individual emotional and imaginative expression. Narrative ethics emerged at a turning-point in linguistics (linguistic turn), when language became the center of new philosophical streams of thought, such as hermeneutics, phenomenology and neo-positivism. Individuals such as John Austin, Noam Chomsky, Gilles Deleuze or Jacques Derrida turned established linguistic concepts upside down. Narrative ethics developed both in the field of philosophy and in theology. It also inevitably contributed to the linguistic construction of personal identity. Our worldview has become pluralistic, far from the universality and the clarity of the Enlightenment in France – Sie`cle des Lumie`res), which did not end up realizing the hopes that it claimed. The coexistence of different points of view has become the source of the success of individual expression and communal life. Narrative ethics is part of applied ethics and deals with concrete situations, giving major attention to context, which emphasizes the consequences and issues raised by a problem. Discursive expression is a narrative, which focuses on a situation and that must be understood in a multidisciplinary manner. Narrative builds on two main ideas or pillars. On the one hand, the uniqueness of a situation influences the notion and application of moral principles. On the other hand, this aspect expresses itself in the form of narrative, and narrative itself expresses an ethical dimension. As much attention is paid to discursive content as is to the individual who is expressing it. In this way, we arrive at the ‘construction’ of the bioethical 386
www.co-oncology.com
case. In the medical domain, in particular, reporting a patient’s case is an everyday activity that fulfills substantive and procedural standards, most often avoiding psychological features, unless they dominate. In general, the description of nonmedical features is fragmentary or even sometimes absent, except when used for emphasis or to orient the understanding of the reader (or listener): ‘Patient conscious, oriented, collaborative’ or ‘individual agitated, aggressive.’ Note that written narrative tends more often to eliminate emotional eruptions or emotions, which is not the case in oral narrative. Published case reports are most frequently written up by caregivers and essentially by doctors. The narrative may also come from an observer who is not involved in the case, but who relays facts in the presence of others present. The discourse is more a mosaic than a continuum, even if it refers to the same event. Finally, the narrator is also one of the protagonists using the first person (‘I’), which presupposes that the ethical issues will thereby be better understood. The conditions of the narrative therefore depend on its construction and the shape that is given to it. Considering the motives that may arise when an individual reports a fact, even when it is known by all, it is therefore not surprising that we come to speak of ‘fiction’ even if it concerns a real case. The term ‘fiction’ may be surprising, but it will suffice to try this exercise in a group to realize that different truths and realities are created according to different narrators. This is what has led thinkers like Chambers [2] to believe that bioethical data are narratives constructed from – most frequently – implicitly and sometimes subconsciously chosen rhetorical elements used to support a moral position. The terms used are charged with meaning and may modify the sense or orientation of the narrative, by using symbols, playing on the meanings, or even presenting personal considerations as fact. The reader is called upon to create an opinion according to what is presented. One of the characteristics of a bioethical case, beyond the fact that it expresses an ethical dilemma, is that it focuses on an action with a time dimension and closure. Chambers describes three types of closure. The first type of closure is provided by the author, who presents his or her conclusion, thereby somehow putting the reader on the spot. The second shows how the problem might not have occurred. Specifically, it considers the example of whether or not sophisticated means should be used to keep one child alive when death is imminent at the expense Volume 26 Number 4 July 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Narrative ethics in the field of oncology Lossignol
of another child who would have every chance to survive. The third type of closure is when the reader is invited to take a position, sometimes freely, according to the different ‘possible’ outcomes. This is really a case of bioethics because in narrative, the ‘what is’ does not consistently correspond to the ‘what should be.’ In any case, this conclusion might satisfy a theoretical point of view, but still needs to be proven in reality. One also needs to consider that a narrative might give rise to or present ethical problems without an ethical dilemma, and that the emotional or psychological dimension of the patient is reduced to what is useful for the discussion. Narrative ethics is not the only solution to ethical problems that arise, but provided we acknowledge its limits, it can be an important tool in doctor–patient interaction [3,4 ,5,6]. It is essential to pay attention to what the patient says and this cannot be disguised through formatted, simplistic discourse. For example, describing a patient as ‘having difficulty adapting’ (without describing those difficulties), when indeed the patient is referring to problems sleeping, lack of appetite, difficulties in family relationships and a loss of vitality, is at the very least diminishing the problems. This holds for all other medical situations that interfere with a patient’s daily life. Paying attention to what the patient says is one of the major elements of the doctor–patient relationship, contributing to its quality and forming the basis for subsequent communication. And therefore, I have to spend some time on this subject. &
NARRATIVE IN THE ONCOLOGY FIELD The diagnosis of cancer is associated with a biographical disruption because it is a potential threat to maintenance of a coherent self, in which the relations between body, mind and everyday life are threatened [2,3,7]. In this view, living with cancer involves a biographical work in renegotiating identity and this work is always challenged by changes in the ‘natural history’ of the disease, by new therapeutic approaches or even survivorship. More than in other chronic diseases, cancer is constantly associated with uncertainty, despair and hopes, and a long-term sense of vulnerability may be observed, even after a long-term disease-free survival. In the perspective of cancer, narrative accounts demonstrate that the work in re-negotiating identity and self should be more integrated in the everyday work [4 ,7]. This is not actually the case, even if narrative is an add-on within the medical paradigm &
in which humans are usually conceptualized as first biological and secondly as social, philosophical, cultural or narrative. Narrative identity is of importance, especially when difficult decisions have to be taken, leading to a more humanistic medicine [8,9]. This is for instance the case when severe complications occur or when end-of-life wishes arise. To date, it must be emphasized that little has been written on this aspect. In an article published in 2006, Chappel et al. [10] report narratives interview conducted in 18 people who discussed euthanasia and assisted suicide. Some patients had advanced cancer and were informed regarding future and prognosis, but the study was not focused on cancer. Nevertheless, it appears that such a topic (end-oflife) deserves a closer attention to ‘what is said and how it is said’ to better understand the deep motivation of patients, beside general moral considerations.
COMMUNICATION Communicating with patients would seem to be a given. Being able to communicate is essential to being able to be understood, and it is one of the foundations of medicine, beyond the simple human relationship. Patient–doctor communication is most often initiated by the patient, who consults a doctor because of a problem deemed to fall within the realm of a doctor’s responsibility. Several conditions must be met for this conversation to be useful and constructive. Nevertheless, it is not a given, and several studies show that major communication deficiencies exist in the medical world, this being the case for several reasons. Often ‘lack of time’ is mentioned to justify communication that is brief, directed and cold. Even if this argument was sound, it is nevertheless fragile, and it has already been demonstrated that even with sufficient time, communication does not function well and that patients have considerable difficulty expressing certain problems. This is the case with pain, and even more so with sexual problems, or wishes with respect to end-of-life, issues which go well beyond the description of a symptom or an indicator such as fatigue, breathlessness or a cough. One element that has a negative impact on communication is not only a lack of awareness of the problem reported, but also an emotional or moral projection about it. Certain barriers – conscious or not – may arise and contribute to the ‘passive-defensive’ position of caregivers faced with the uniqueness of a case, who react as much to the content of the discourse of the patient as to the time dedicated to listening to him or her.
1040-8746 ß 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
www.co-oncology.com
387
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Supportive care
Fortunately, there are means that help to improve the quality of communication considerably, without requiring much effort, even if it is simply to accept the need to question one’s own ability to communicate. The analysis of exchanges during a consultation (transcribed recordings, listening in a group, questionnaires), the use of roleplay and targeted training can contribute to improving the quality of communication considerably. In any case, there is no magic or immutable secret or guarantee, but certain elements should be considered systematically in order to communicate with C.L.A.S.S.E. In other words, it is important to know how to create an environment of Confidence, to give patients the Liberty (‘Freedom’ should be more appropriate) to speak without interruption, Accompany patients in the process by helping to formulate their thoughts but avoiding closed questions, assuring them of your Support and ensuring their Security during the process. Finally, one must regularly Evaluate what is said. Transcribing a maximum of pertinent elements, using if needed the patient’s terms, will prove to be an invaluable aid for future consultations. In particular, this clearly approaches what might be called the narrative identity of the patient. Finally, one should adopt an attitude favorable to good interaction, including an appropriate context. One’s body language should not be denigrating – certain filmed interviews show the extent to which the position of the interlocutors influences the overall direction of the conversation. It is important to pay attention to this because, even subconsciously, it is possible to interfere with communication simply with a certain behavior or the particular layout of space. By knowing this, many pitfalls of doctor–patient communication can be avoided.
CONCLUSION The practice of medicine is an ethical matter, even if this term has only been introduced recently in its history. The advent of bioethics has given us considerable insight into the practice of medicine, and it would be inconceivable to return to a paternalistic practice that ignores the will of the patient. One of the current ethical thoughts that appeared several years ago is that of narrative ethics.
388
www.co-oncology.com
Though not without its flaws, it has in any case put language at the center of doctor–patient discussion, bearing in mind the contribution of each participant. It has shown that in discourse, nothing is neutral and objectivity can only be approximated by taking into account different points of view. Like procedural ethics of discussion, and in complement with principlism, narrative ethics promotes constructive communication between patients and caregivers. It is necessary to improve the communication skills of caregivers to maximally reduce the asymmetry between them and patients. Respecting the narrative identity of patients can only improve the quality of care in general. Narrative identity is of importance, especially when difficult decisions have to be taken. To date, it must be emphasized that little has been written on this aspect. Acknowledgements The author thanks the Supportive and Palliative Care Unit (UASS) of the Institut Jules Bordet, Brussels, Belgium. Conflicts of interest There are no conflicts of interest.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. Beauchamp T, Childress J. Principles of biomedical ethics. 5th ed Oxford: Oxford University Press; 2001. 2. Chambers T. The fiction of bioethics (cases as literary texts). New York: Routledge; 1999. 3. Bury M. Illness narratives: fact or fiction? Sociology of health & Illness 2001; 23:263–285. 4. Atkinson S, Rubinelli S. Narrative in cancer research and policy: voice, & knowledge and context. Crit Rev Oncol Hematol 2012; 84:S11–S16. This is a comprehensive review on narrative in medicine. Highly recommended!. 5. McCarthy J. Principlism or narrative ethics: must we choose between them? Med Humanities 2003; 29:65–71. 6. Hudson Jones A. Narrative in medical ethics. BMJ 1999; 318:253–256. 7. Frank AW. Tricksters and truth tellers: narrating illness in an age of authenticity and appropriation. Lit Med 2009; 28:185–199. 8. Kuczewski MG. Commentary, narrative views of personal identity and substituted judgment in surrogate decision making. J Law Med Ethics 1999; 27:32–36. 9. Dion-Labrie M, Doucet H. Me´decine narrative et e´thique narrative en Ame´rique du Nord: perspective historique. A la recherche d‘une medicine humaniste. Ethique et sante´ 2011; 8:63–68. 10. Chappel A, Ziebland S, McPherson A, et al. What people close to death say about euthanasia and assisted suicide: a qualitative study. J Med Ethics 2006; 32:706–710.
Volume 26 Number 4 July 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Narrative ethics in the field of oncology Dominique Lossignol
Purpose of review To evaluate the application of narrative within medical practice. Illness like cancer constitutes a biographical disruption that occurs several times during the disease, from diagnosis to complications and treatments. This review analyzes the interest of narrative ethics in medicine with a focus on cancer. Recent findings The field of narrative ethics in medicine has emerged from a confluence of humanities, contemporary narratology, literature and social sciences. Although there is a growing literature on this topic, little has been written on an oncology setting. This article is more a personal consideration on the subject than a classical review of the literature. Summary The advent of bioethics has given considerable insight into the practice of medicine, and it would be inconceivable to return to a paternalistic practice that ignores the will of the patient. Like procedural ethics of discussion, and in complement with principlism, narrative ethics promotes constructive communication between patients and caregivers. Keywords cancer, communication, narrative ethics
INTRODUCTION This article evaluates the interest of narrative ethics in medical practice. The field of narrative ethics in medicine has emerged from a confluence of humanities, contemporary narratology, literature and social sciences. A special focus will be made in the field of oncology.
ETHICS The concept of bioethics is recent, being part of a line of thought emerging in the 1970s that aimed to study discourse, research and developments in biology and medicine. Bioethics appeared at a time when the all-mighty power of science was being questioned and when the subject of study – the patient – became the center of discussion. Bioethics is the fruit of ethical questioning that arose in the aftermath of World War II and during the Nuremberg Trials, which led to the first code of ethics related to experimentation with humans and was followed by the Declaration of Helsinki and The Belmont Report. Originating in the United States, bioethics rapidly found resonance in Europe where philosophers, legal experts, researchers and physicians understood the significance of the movement. It is unique in its
multidisciplinarity, inviting the different players to define their points of view, to listen actively to the arguments in order to reach a discursive and practical conclusion. The starting point for discussion is a particular case that poses ethical questions, rather than dogma or pre-established rules and not a systematic use of dogma. One of the major theories in bioethics is Principlism, presented in several articles then in a book by Beauchamp and Childress [1]. The Principles of Medical Ethics was published in 1979 and has been well known ever since. This work draws its importance by applying axiomatic priority to four moral principles in the resolution of ethical conflicts: respect for the autonomy of the individual (respect the personal views, actions and choices of the other), beneficence (act only for the benefit of the other), nonmaleficence (avoid actively or passively causing harm) and distributive justice (treat people fairly at any time). Institut Jules Bordet, Brussels, Belgium Correspondence to Dominique Lossignol, Associate Professor and Department Head, Institut Jules Bordet, 1000 Brussels, Belgium. Tel: +32 2 541 33 32; e-mail: [email protected] Curr Opin Oncol 2014, 26:385–388 DOI:10.1097/CCO.0000000000000085
1040-8746 ß 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
www.co-oncology.com
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Supportive care
KEY POINTS Ethics is not only a collection of moral concepts. Narrative ethics offers new insight in cancer patient care. Narrative ethics goes closer to specific cases. Applied ethics goes beyond moral philosophy.
However honorable, these principles sometimes appear to be too broad to resolve some new ethical situations or have even undermined some quite ordinary situations. The universality of such principles has been challenged by other currents of ethical thought, such as procedural justice, the ethics of care and narrative ethics.
NARRATIVE ETHICS Narrative ethics embodies the postmodern criticism of reason and accentuates individual emotional and imaginative expression. Narrative ethics emerged at a turning-point in linguistics (linguistic turn), when language became the center of new philosophical streams of thought, such as hermeneutics, phenomenology and neo-positivism. Individuals such as John Austin, Noam Chomsky, Gilles Deleuze or Jacques Derrida turned established linguistic concepts upside down. Narrative ethics developed both in the field of philosophy and in theology. It also inevitably contributed to the linguistic construction of personal identity. Our worldview has become pluralistic, far from the universality and the clarity of the Enlightenment in France – Sie`cle des Lumie`res), which did not end up realizing the hopes that it claimed. The coexistence of different points of view has become the source of the success of individual expression and communal life. Narrative ethics is part of applied ethics and deals with concrete situations, giving major attention to context, which emphasizes the consequences and issues raised by a problem. Discursive expression is a narrative, which focuses on a situation and that must be understood in a multidisciplinary manner. Narrative builds on two main ideas or pillars. On the one hand, the uniqueness of a situation influences the notion and application of moral principles. On the other hand, this aspect expresses itself in the form of narrative, and narrative itself expresses an ethical dimension. As much attention is paid to discursive content as is to the individual who is expressing it. In this way, we arrive at the ‘construction’ of the bioethical 386
www.co-oncology.com
case. In the medical domain, in particular, reporting a patient’s case is an everyday activity that fulfills substantive and procedural standards, most often avoiding psychological features, unless they dominate. In general, the description of nonmedical features is fragmentary or even sometimes absent, except when used for emphasis or to orient the understanding of the reader (or listener): ‘Patient conscious, oriented, collaborative’ or ‘individual agitated, aggressive.’ Note that written narrative tends more often to eliminate emotional eruptions or emotions, which is not the case in oral narrative. Published case reports are most frequently written up by caregivers and essentially by doctors. The narrative may also come from an observer who is not involved in the case, but who relays facts in the presence of others present. The discourse is more a mosaic than a continuum, even if it refers to the same event. Finally, the narrator is also one of the protagonists using the first person (‘I’), which presupposes that the ethical issues will thereby be better understood. The conditions of the narrative therefore depend on its construction and the shape that is given to it. Considering the motives that may arise when an individual reports a fact, even when it is known by all, it is therefore not surprising that we come to speak of ‘fiction’ even if it concerns a real case. The term ‘fiction’ may be surprising, but it will suffice to try this exercise in a group to realize that different truths and realities are created according to different narrators. This is what has led thinkers like Chambers [2] to believe that bioethical data are narratives constructed from – most frequently – implicitly and sometimes subconsciously chosen rhetorical elements used to support a moral position. The terms used are charged with meaning and may modify the sense or orientation of the narrative, by using symbols, playing on the meanings, or even presenting personal considerations as fact. The reader is called upon to create an opinion according to what is presented. One of the characteristics of a bioethical case, beyond the fact that it expresses an ethical dilemma, is that it focuses on an action with a time dimension and closure. Chambers describes three types of closure. The first type of closure is provided by the author, who presents his or her conclusion, thereby somehow putting the reader on the spot. The second shows how the problem might not have occurred. Specifically, it considers the example of whether or not sophisticated means should be used to keep one child alive when death is imminent at the expense Volume 26 Number 4 July 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Narrative ethics in the field of oncology Lossignol
of another child who would have every chance to survive. The third type of closure is when the reader is invited to take a position, sometimes freely, according to the different ‘possible’ outcomes. This is really a case of bioethics because in narrative, the ‘what is’ does not consistently correspond to the ‘what should be.’ In any case, this conclusion might satisfy a theoretical point of view, but still needs to be proven in reality. One also needs to consider that a narrative might give rise to or present ethical problems without an ethical dilemma, and that the emotional or psychological dimension of the patient is reduced to what is useful for the discussion. Narrative ethics is not the only solution to ethical problems that arise, but provided we acknowledge its limits, it can be an important tool in doctor–patient interaction [3,4 ,5,6]. It is essential to pay attention to what the patient says and this cannot be disguised through formatted, simplistic discourse. For example, describing a patient as ‘having difficulty adapting’ (without describing those difficulties), when indeed the patient is referring to problems sleeping, lack of appetite, difficulties in family relationships and a loss of vitality, is at the very least diminishing the problems. This holds for all other medical situations that interfere with a patient’s daily life. Paying attention to what the patient says is one of the major elements of the doctor–patient relationship, contributing to its quality and forming the basis for subsequent communication. And therefore, I have to spend some time on this subject. &
NARRATIVE IN THE ONCOLOGY FIELD The diagnosis of cancer is associated with a biographical disruption because it is a potential threat to maintenance of a coherent self, in which the relations between body, mind and everyday life are threatened [2,3,7]. In this view, living with cancer involves a biographical work in renegotiating identity and this work is always challenged by changes in the ‘natural history’ of the disease, by new therapeutic approaches or even survivorship. More than in other chronic diseases, cancer is constantly associated with uncertainty, despair and hopes, and a long-term sense of vulnerability may be observed, even after a long-term disease-free survival. In the perspective of cancer, narrative accounts demonstrate that the work in re-negotiating identity and self should be more integrated in the everyday work [4 ,7]. This is not actually the case, even if narrative is an add-on within the medical paradigm &
in which humans are usually conceptualized as first biological and secondly as social, philosophical, cultural or narrative. Narrative identity is of importance, especially when difficult decisions have to be taken, leading to a more humanistic medicine [8,9]. This is for instance the case when severe complications occur or when end-of-life wishes arise. To date, it must be emphasized that little has been written on this aspect. In an article published in 2006, Chappel et al. [10] report narratives interview conducted in 18 people who discussed euthanasia and assisted suicide. Some patients had advanced cancer and were informed regarding future and prognosis, but the study was not focused on cancer. Nevertheless, it appears that such a topic (end-oflife) deserves a closer attention to ‘what is said and how it is said’ to better understand the deep motivation of patients, beside general moral considerations.
COMMUNICATION Communicating with patients would seem to be a given. Being able to communicate is essential to being able to be understood, and it is one of the foundations of medicine, beyond the simple human relationship. Patient–doctor communication is most often initiated by the patient, who consults a doctor because of a problem deemed to fall within the realm of a doctor’s responsibility. Several conditions must be met for this conversation to be useful and constructive. Nevertheless, it is not a given, and several studies show that major communication deficiencies exist in the medical world, this being the case for several reasons. Often ‘lack of time’ is mentioned to justify communication that is brief, directed and cold. Even if this argument was sound, it is nevertheless fragile, and it has already been demonstrated that even with sufficient time, communication does not function well and that patients have considerable difficulty expressing certain problems. This is the case with pain, and even more so with sexual problems, or wishes with respect to end-of-life, issues which go well beyond the description of a symptom or an indicator such as fatigue, breathlessness or a cough. One element that has a negative impact on communication is not only a lack of awareness of the problem reported, but also an emotional or moral projection about it. Certain barriers – conscious or not – may arise and contribute to the ‘passive-defensive’ position of caregivers faced with the uniqueness of a case, who react as much to the content of the discourse of the patient as to the time dedicated to listening to him or her.
1040-8746 ß 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
www.co-oncology.com
387
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Supportive care
Fortunately, there are means that help to improve the quality of communication considerably, without requiring much effort, even if it is simply to accept the need to question one’s own ability to communicate. The analysis of exchanges during a consultation (transcribed recordings, listening in a group, questionnaires), the use of roleplay and targeted training can contribute to improving the quality of communication considerably. In any case, there is no magic or immutable secret or guarantee, but certain elements should be considered systematically in order to communicate with C.L.A.S.S.E. In other words, it is important to know how to create an environment of Confidence, to give patients the Liberty (‘Freedom’ should be more appropriate) to speak without interruption, Accompany patients in the process by helping to formulate their thoughts but avoiding closed questions, assuring them of your Support and ensuring their Security during the process. Finally, one must regularly Evaluate what is said. Transcribing a maximum of pertinent elements, using if needed the patient’s terms, will prove to be an invaluable aid for future consultations. In particular, this clearly approaches what might be called the narrative identity of the patient. Finally, one should adopt an attitude favorable to good interaction, including an appropriate context. One’s body language should not be denigrating – certain filmed interviews show the extent to which the position of the interlocutors influences the overall direction of the conversation. It is important to pay attention to this because, even subconsciously, it is possible to interfere with communication simply with a certain behavior or the particular layout of space. By knowing this, many pitfalls of doctor–patient communication can be avoided.
CONCLUSION The practice of medicine is an ethical matter, even if this term has only been introduced recently in its history. The advent of bioethics has given us considerable insight into the practice of medicine, and it would be inconceivable to return to a paternalistic practice that ignores the will of the patient. One of the current ethical thoughts that appeared several years ago is that of narrative ethics.
388
www.co-oncology.com
Though not without its flaws, it has in any case put language at the center of doctor–patient discussion, bearing in mind the contribution of each participant. It has shown that in discourse, nothing is neutral and objectivity can only be approximated by taking into account different points of view. Like procedural ethics of discussion, and in complement with principlism, narrative ethics promotes constructive communication between patients and caregivers. It is necessary to improve the communication skills of caregivers to maximally reduce the asymmetry between them and patients. Respecting the narrative identity of patients can only improve the quality of care in general. Narrative identity is of importance, especially when difficult decisions have to be taken. To date, it must be emphasized that little has been written on this aspect. Acknowledgements The author thanks the Supportive and Palliative Care Unit (UASS) of the Institut Jules Bordet, Brussels, Belgium. Conflicts of interest There are no conflicts of interest.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. Beauchamp T, Childress J. Principles of biomedical ethics. 5th ed Oxford: Oxford University Press; 2001. 2. Chambers T. The fiction of bioethics (cases as literary texts). New York: Routledge; 1999. 3. Bury M. Illness narratives: fact or fiction? Sociology of health & Illness 2001; 23:263–285. 4. Atkinson S, Rubinelli S. Narrative in cancer research and policy: voice, & knowledge and context. Crit Rev Oncol Hematol 2012; 84:S11–S16. This is a comprehensive review on narrative in medicine. Highly recommended!. 5. McCarthy J. Principlism or narrative ethics: must we choose between them? Med Humanities 2003; 29:65–71. 6. Hudson Jones A. Narrative in medical ethics. BMJ 1999; 318:253–256. 7. Frank AW. Tricksters and truth tellers: narrating illness in an age of authenticity and appropriation. Lit Med 2009; 28:185–199. 8. Kuczewski MG. Commentary, narrative views of personal identity and substituted judgment in surrogate decision making. J Law Med Ethics 1999; 27:32–36. 9. Dion-Labrie M, Doucet H. Me´decine narrative et e´thique narrative en Ame´rique du Nord: perspective historique. A la recherche d‘une medicine humaniste. Ethique et sante´ 2011; 8:63–68. 10. Chappel A, Ziebland S, McPherson A, et al. What people close to death say about euthanasia and assisted suicide: a qualitative study. J Med Ethics 2006; 32:706–710.
Volume 26 Number 4 July 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
