Indiana University-Purdue University Indianapolis (IUPUI) / This project contributes to the improvement of the healing encounter between physician and patient and broadens the scope of medical ethics via application of a methodology that creatively communicates patient experience. Contemporary medical training and socialization can create emotional distance between patients and physicians, which has both positive and negative effects. A physician’s “detached concern” often renders patients’ ways of knowing irrelevant to their care. This has a negative effect on patient autonomy, trust, and the healing encounter in general. Herwaldt (2008) developed a pedagogical tool of distilling patient interviews in narrative form into “found poems,” in which the patient experience is expressed in verse; Herwaldt contends that the resulting poems hold the possibility of cultivating empathy in medical practitioners. My research extends Herwaldt’s work with a new set of ten patients currently in cancer treatment, translating their stories of illness into verse. The resulting poems have the potential to empower patients by legitimizing their narrative or experiential ways of knowing as complementary to physician perspectives and approaches to treatment. Clinical and feminist ethics are similar in their attention to case context, empathy, and legitimacy of narrative. However, there are aspects of feminist ethical theory that are not thoroughly delineated in clinical ethics—specifically, attention to power imbalances in medical structures and variations in ethical perspectives. When the poems are examined using a feminist bioethical framework, patients are empowered by expanding both the idea of justice and the principlist definition of autonomy to include the feminist conception of relational autonomy.

Bakgrund:Patienten som besöker akutmottagningen idag möts av vårdpersonal som ska ta hand om ett ökande antal patienter med svårare och mer komplexa vårdbehov. Studier visar att det skapar trygghet för patienten att själv få delge sina tankar om sitt hälsotillstånd, bli tagen på allvar och lyssnad på. Patientens berättelse har inte varit i fokus då personalen värderar vitala parametrar högre, tycker det syns om patienten mår dåligt och menar att patientberättelsen kan ta lång tid. Samtidigt visar forskning att personcentrerad vård, med den inledande patientberättelsen, har positiva effekter både för patienten och personalen samt ger minskade vårdkostnader. Syfte:Beskriva patientens upplevelse av att lämna sin patientberättelse på akutmottagning och vad som bidrog till upplevelsen. Metod:Semistrukturerade intervjuer med 20 patienter på två akutmottagningar analyserades med kvalitativ innehållsanalys. Resultat:Patienten hade både positiva och negativa upplevelser av att lämna sin berättelse. Studiens resultat delades in i tre kategorier av upplevelser. Den första kategorin beskriver upplevelser som påverkades av både den fysiska och psykosociala miljön. Den andra kategorin handlar om personalens påverkan av upplevelsen genom att ge plats, skapa bekvämlighet och visa närvaro i samtalet. Den tredje kategorin beskriver patientens egenskaper som påverkade upplevelsen. Förslag på åtgärder som kan förbättra patientens upplevelse framkom. Slutsats:Personalens beteende och miljön hade stor betydelse för patientens upplevelse av att lämna sin patientberättelse på akutmottagning, men även patientens personliga egenskaper behöver beaktas. Att förstå och göra sig förstådd, känna sig trygg, bekväm, delaktig och bli lyssnad på i en lugn ostörd miljö var viktigt för patienten. Detta var möjligt genom anpassningar i personalens beteenden och miljön. Kunskapen bör användas till att utveckla vården mot att ge goda förutsättningar för patienten att lämna den viktiga berättelsen. Resultatet kan på så sätt användas för att förbättra patientens upplevelse på akutmottagningen genom en mer personcentrerad vård. / Background:The patient visiting the Emergency Department today are met by staff who care for an increasing number of patients, with more difficult and more complex care needs. Studies show that the patient feel safer in their care when they have an opportunity to share their thoughts about their state of health and feel taken seriously and listened to. The patient's narrative has not been in focus since the staff prioritizes ​​vital signs, considers the patient's illness to be obvious and believes that listening to the patient's narrative may take a long time. At the same time, research shows that person-centered care, including an initial patient narrative, has positive effects for the patient, the staff and the reduction of healthcare costs. Aim:Describe the patient's experience of reporting the patient narrative at the emergency department, and what contributed to the experience. Method:Semi-structured interviews with 20 patients at two emergency departments were analyzed with qualitative content analysis. Results:The patient had both positive and negative experiences from expressing their patient narrative. The study results are divided into three categories.The first category describes that the experience was influenced by the physical and psychosocial environment. The second category concerns how the staff influenced the experience by providing space, creating comfort and being present in the conversation. The third category describes that the experience was influenced by the patient's personal characteristics. Suggestions for arrangements that improve the patient’s experience have been achieved. Conclusion:The person's behavior and environment were of great importance to the patient's experience of expressing their patient narrative at the Emergency Department, but also the patient's personal characteristics need to be considered. To understand and make yourself understood, feel safe, comfortable, participated and be listened to in a calm undisturbed environment was important to the patient. This was possible through adjustments in staff behavior and the environment. Knowledge should be used to develop health care to provide good conditions for the patient to report the important narrative. Therefore, the results can be used to improve the patient’s experience in the Emergency Department through more person-centered care.

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Thesis (MEdPsych (Educational Psychology))--University of Stellenbosch, 2005. / As a research-therapist-in-training I sought to document a young boys story of his struggle with enuresis. The purpose of the study was to explore the use of the narrative metaphor with this young boy who took a stand against enuresis after numerous attempts to resolve it. Enuresis is a medical diagnostic term and I attempted to seek alternatives to the diagnosis and treatment of what is sometimes viewed as pathology. I undertook to find an answer to the research curiosity: How could the narrative metaphor be used in working against the bedwetting? The narrative approach was utilized to guide the research journey in order to facilitate the client's preferred, alternative story of his life. I was interested in highlighting an alternative story to the diagnosis and treatment of enuresis as pathology. Looking at the positivist views on enuresis I became particularly interested how the narrative metaphor could be used against enuresis. I used the guidelines and questions suggested by Michael White's work (1995:201) on narrative therapy and bedwetting to strengthen Michael's voice. White described ways of externalising the problem and mapping the influence of the problem. Key concepts used during the research journey were: terms adopted from narrative therapy, enuresis and postmodernism.

L’objectif de cette thèse est d’analyser les écritures de personnes atteintes du cancer. La première partie de notre travail se focalise sur la description des caractéristiques des six ouvrages constituant notre corpus. Nous proposons de les nommer « autopathographies », c’est-à-dire de les définir comme des récits rétrospectifs en prose qu'une personne fait de sa propre maladie, dans lesquels il y a identité entre l’expérience de maladie de l’auteur (tel qu’il figure par son nom sur la couverture), celle du narrateur du récit et celle du malade dont on parle. Le rapport qui s’instaure entre la maladie et l’écriture est à la base de la structure interne de la deuxième et de la troisième partie de notre travail. Dans la deuxième partie, nous analysons le lien entre le cancer et l’écriture : nous démontrons le rôle du corps malade comme objet de l'écriture, mais aussi comme cause et source, dans la mesure où l’attention au corps et à son langage façonne les récits. Le langage choisi pour décrire le cancer est l’objet de l’analyse menée dans la troisième partie. En nous basant sur la segmentation faite dans la deuxième partie, nous identifions les métaphores mobilisées par les patients pour décrire la maladie et le parcours de soins. Notre travail démontre l’existence d’une écriture basée sur l’expérience directe de patients qui enrichit le langage pour « dire » le cancer et la représentation de cette maladie. En annexe se trouvent le fruit de nos entretiens inédits avec Giacomo Cardaci, Cristina Piga et Melania Rizzoli, auteurs de trois des autopathographies analysées. / The aim of our work is to investigate the narrative of people diagnosed with cancer. The first part of our study focusses on the description of the characteristics of the six works composing our corpus. We define them « autopathographies », meaning « retrospective prose narrative written by a real person concerning his or hers own illness experience »; in these narratives the experience of illness of the author (whose name designates a real person), the one of the narrator and of the one of principal character are identical. The relationship between cancer and writing is the basis of the structure of the second and of the third part of our research. The aim of the second part is to elucidate the link between cancer and writing; we prove that the diseased body is the topic, cause and source of the autopathographies, since the attention accorded to the diseased body models the story. In the third part of my PhD we focus on the language used to describe cancer. The analysis done in the second part is a starting point to identify the metaphors used by the patients to describe cancer and their experience of illness. Our work demonstrates the existence of a narrative based on the patients’ illness experiences and this narrative enriches the language used to “tell” cancer and its representation. Appendices: synopsis of the autopathographies and interviews of Giacomo Cardaci, Cristina Piga and Melania Rizzoli.

Cette thèse est consacrée à un examen critique des tentatives actuelles pour donner à l’appel à « plus d’humanisme » en médecine un fondement philosophique. En effet, comme je le montre, les deux approches « humanistes » aujourd’hui prédominantes – la médecine narrative et la phénoménologie de la médecine – échouent à donner un sens convaincant au concept même d’humanisme. Les deux approches ont d’abord en commun de se construire en opposition à ce qu’elles appellent le modèle biomédical, mais sont incapables d’en donner une caractérisation cohérente et d’en produire une critique convaincante, qu’elles le considèrent comme un produit de la science (cas de la médecine narrative) ou comme avatar du naturalisme (cas de la phénoménologie de la médecine). En deuxième lieu, les deux approches s’enlisent dans des problèmes qui leur sont propres. La médecine narrative s’appuie sur des thèses problématiques : thèse de l’unicité de l’expérience subjective, thèse de la narrativité. La phénoménologie de la médecine rencontre de son côté des problèmes métaphilosophiques quant à la définition de la phénoménologie elle-même, qu’elle tend à réduire à l’étude de l’expérience vécue ou psychologique. Enfin, je critique la stratégie qui leur est commune, consistant à mettre l’empathie au centre de leur conception de l’humanisme. J’esquisse pour conclure une voie possible pour reformuler le problème initial et déplacer la discussion vers des questions de justice et d’accès aux systèmes de santé. / This dissertation is a critical appraisal of contemporary attempts at giving a philosophical basis to the claim that medicine is in need of “more humanism”. I argue that two prominent medical “humanistic” approaches today – narrative medicine and phenomenology of medicine – fail to give a convincing account of the concept of humanism. Both approaches are reactions against what they call the biomedical model, yet they fail to provide either a coherent account or a convincing criticism of that model, whether they define it as an instance of science (as does narrative medicine) or as a product of naturalism (as does phenomenology of medicine). Moreover, both approaches founder on issues in their own terms. Narrative medicine is built on problematical theses, notably the narrativity thesis and the singularity of subjective experiences thesis. Meanwhile, phenomenology of medicine runs into meta-philosophical obstacles regarding the definition of phenomenology itself, notably by reducing it to the study of lived or psychological experience. Finally, I criticise what brings together their humanistic strategy and which consists in putting empathy at the centre of their definition of humanism. By way of conclusion, I then sketch an alternative path for medical humanism, focused on issues of justice and access in health systems.

Thesis (M.A.)--Indiana University, 2009. / Department of Philosophy, Indiana University-Purdue University Indianapolis (IUPUI). Advisor(s): Peg Brand, James Capshew, Richard Gunderman, Jane E. Schultz. Includes vitae. Includes bibliographical references (leaves 117-122).

Seit einigen Jahre fällt eine Fülle an verschiedenen multimedialen Veröffentlichungen zum Thema Sterben auf, die einen Zusammenhang von Sterben und Erzählen offensichtlich machen, den ich in dieser Arbeit näher erforscht habe. Das Erzählen als eine kulturelle Praktik übernimmt in den von mir untersuchten Veröffentlichungen die Funktion einer ästhetisch-ethischen Sorge und kann als Form zeitgenössischer Sterbekunst betrachtet werden. Es eröffnet einen Raum für ethisches Handeln, um die eigene Haltung zum Sterbeprozess zu eruieren, um diesen selbstbestimmt zu gestalten und abschließend ästhetisch als ein ‚gutes Sterben‘ zu formulieren. Die Fülle der verschiedenen Veröffentlichungen zum Thema Sterben – von diaristischen Selbstreflexionen über fiktionale Sterbenarrative hin zu populärwissenschaftlichen Publikationen von Palliativmediziner*innen – drückt sich sowohl in der Wahl verschiedener Medien als auch in den unterschiedlichen Perspektiven auf den Sterbeprozess aus. Ich spreche demzufolge von einer Polyphonie, die sowohl Sterbende als auch diejenigen zu Wort kommen lässt, die Sterbende begleiten. Die Polyphonie hebt im Bachtin’schen Sinne nicht nur die Bedeutung der ‚Anderen‘ hervor, sondern bringt auch ‚fremde Stimmen‘ zu Gehör. So werden Uneindeutigkeiten, Asymmetrien oder auch Sehnsüchte formulierbar, die Sterbeprozesse heute maßgeblich bestimmen und nicht zuletzt in den ethischen Debatten zu Sterbebegleitung/-hilfe evident werden. Die Polyphonie öffnet dabei im besonderen Maße den Blick auf die Pflege, die so eine neue Sichtbarkeit erfährt. Die Veröffentlichungen artikulieren nämlich verschiedene Formen der Sorge, die nicht nur die konkreten Maßnahmen von Sterbebegleitung und/oder Sterbehilfe meinen. Vielmehr wird auch eine im Foucault‘schen Sinne Idee der Selbstsorge formuliert. Das polyphone Erzählen artikuliert demnach einen Raum der Sorge selbst, in dem Sterben als Form der Gemeinschaftung und Solidarität zwischen Sterblichen erscheint. / Recent years have seen an abundance of varied publications about dying, manifesting the relationship between dying and narration. In my work I argue that in these publications, narrating as a cultural practice articulates an aesthetic-ethical concern to communicate the process of dying not only from a dying person’s perspective but also from that of those accompanying death. Thus, these narratives of dying can be seen as a contemporary form of an “art of dying.” The act of narrating opens up a space for ethical transactions in which one’s own position toward the process of dying can be plumbed; in turn, one is able to determine one’s own process of dying and, finally, aesthetically formulate the process as a “good death.” Today’s plethora of publications on dying – from diaristic self-reflections to fictional narratives to popular scientific publications by doctors in the field of palliative medicine – not only manifest the many types of media in which the narratives are formulated but also convey the many perspectives on the process of dying itself. I therefore speak of a polyphony, which raises the voices of those dying and of those accompanying a dying person. This polyphony accentuates the importance of the “other” and elevates “outsider voices.” The narratives articulate the ambiguities and asymmetries, but also desires, that largely shape dying today and that become evident in the ethical debates about euthanasia and assisted suicide. Contemporary narratives of dying show that the idea of care is of great importance today. Care, however, is articulated not only in questions of how the dying can be cared for — in the sense of palliative care or assisted suicide — but also in the Foucauldian sense of “care for the self,” meaning self-awareness and concern about oneself. To this extent, these polyphonic narratives articulate a space of concern and care, in which the process of dying requires and builds community and becomes a form of solidarity between mortals.

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