There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

Background Implementing person-centred care (PCC) in nursing homes is challenging due to a gap between theory and practice. Bridging this gap requires suitable education, which focuses on learning how to attune care to the values and preferences of residents and take moral, relational, and situational aspects into account. Staff’s stories about the care they provide (i.e. caring stories) may deliver valuable insights for learning about these aspects. However, there is limited research on using staff's narratives for moral learning. Objective This (...) study aims to provide insight into the perspectives of nursing staff on using their caring stories to learn about PCC. Research design In this qualitative research, we conducted two rounds of interviews with 17 participants working in nursing homes. We wanted to obtain nursing staff’s perceptions of working with their caring stories and the impact on PCC. Ethical considerations Participation was voluntary, and participants provided written consent. The study protocol is approved by The Institutional Review Board of the Medical Ethical Committee Leiden-Den Haag-Delft. Findings Working with caring stories enables nursing staff to provide PCC and improves job satisfaction. It increases awareness of what matters to residents, fosters information rich in context and meaning, and enhances voice and vocabulary. Through in-depth team reflections, nursing staff discussed the significant moments for residents, which centralizes the discussions on the moral quality of care. Discussion Working with caring stories fosters dialogue on PCC and enhances reflection on ethical situations in daily encounters, contributing to the moral development of nursing staff. Putting nursing staff’s narratives at the centre of learning suits their daily practice and intrinsic motivation. Therefore, the outcomes of this study are an addition to the existing literature about using narratives in long-term care. Conclusion Using nursing staff's narratives contributes to PCC and positively impacts nursing staff. We recommend using staff's caring stories as a vehicle for moral learning in the transition to PCC. (shrink)

In this co-authored article, one contributor presents a case story from an interview with a social worker in Slovenia, while five others offer commentaries on ethical aspects of the case. The story comes from a practitioner working with a pregnant young woman, arranging for adoption following birth. The social worker respected the woman’s request to keep her identity secret, hence not registering her in the institutional records. However, whilst the social worker was on holiday, the baby was born and anonymity (...) was not maintained. Commentaries 1 and 2 evaluate the story through its form: as a narrative with a tempo and plot; and as a performance that creates its narrator as an agent with an ethical identity. Commentary 3 uses a normative moral philosophical framework (virtue ethics), while the final two commentaries take a more grounded approach. Commentary 4 views the social worker as using discretion to act in a space void of rules (there is no provision for anonymous birth), whereas Commentary 5 foregrounds the Slovenian code of ethics as a source of ethical standards unremarked upon by the social worker. The article ends with reflections on the value of exploring multiple perspectives and engaging in dialogue in developing ethical understandings and actions. (shrink)

Narrative ethics taps into an inherent human need to tell our own stories centred on our own moral values and to have those stories heard and acknowledged. However, not everyone’s words are afforded equal power. The use of narrative ethics in bioethical decision-making is problematized by a disparity in whose stories are told, whose stories are heard, and whose stories are believed. Here, I conduct an analysis of narrative ethics through a critical theory lens to show how entrenched patterns of (...) narrative neglect in medicine are harming not only our capacity to make use of narrative ethics but also our capacity to deliver effective healthcare. To illustrate this point, I use three examples where the patient’s gender affects how their stories unfold: autism, weight, and pain management. From these, I argue that the use of narrative ethics without the application of a critical theory lens risks the exacerbation of what Miranda Fricker refers to as “testimonial injustice,” the prima facie harm experienced by individuals whose credibility is undermined by others’ prejudices. Finally, I suggest that narrative ethics can be a powerful tool for mitigating oppressive practices in medicine if we couple it with critical analysis that enables us to understand the power dynamics at play in storytelling. (shrink)

The current empirical research and normative arguments on physician-assisted dying in the Netherlands seem insufficient to provide ethical guidance to general practitioners in the practice of PAD, due to a gap between the evidence and arguments on the one hand and the uncertainties and complexities as found in everyday practice on the other. This paper addresses the problems of current ethical arguments and empirical research and how both seem to be profoundly influenced by the Dutch legislative framework on PAD and (...) a certain view on ethics. Furthermore, the paper elaborates on how other approaches to empirical research in bioethics, such as found in the broad field of narrative research, could supplement the empirical and ethical evaluation of PAD in the Netherlands. This paper also addresses the challenging question of how empirical data—in this case narratives—relate to normativity. The paper is written in the form of a personal narrative of the author, a young Dutch general practitioner and researcher in bioethics. This style is intentionally chosen, to illustrate how work context and professional background influence the observations one makes and the questions one may ask about the topic of PAD. In addition, by using this style, this paper not only gives a different perspective on a much-contested bioethical issue, but also on the challenges faced when a physician–bioethicist has to navigate different disciplinary fields and epistemological paradigms, especially since the ‘empirical turn’ in bioethics. (shrink)

Starting dialysis at an advanced age is a clinical challenge and an ethical dilemma. The advantages of starting dialysis at “extreme” ages are questionable as high dialysis-related morbidity induces a reflection on the cost- benefit ratio of this demanding and expensive treatment in a person that has a short life expectancy. Where clinical advantages are doubtful, ethical analysis can help us reach decisions and find adapted solutions. Mr. H is a ninety-year-old patient with end-stage kidney disease that is no longer (...) manageable with conservative care, in spite of optimal nutritional management, good blood pressure control and strict clinical and metabolic evaluations; dialysis is the next step, but its morbidity is challenging. The case is analysed according to principlism (beneficence, non-maleficence, justice and respect for autonomy). In the setting of care, dialysis is available without restriction; therefore the principle of justice only partially applied, in the absence of restraints on health-care expenditure. The final decision on whether or not to start dialysis rested with Mr. H (respect for autonomy). However, his choice depended on the balance between beneficence and non-maleficence. The advantages of dialysis in restoring metabolic equilibrium were clear, and the expected negative effects of dialysis were therefore decisive. Mr. H has a contraindication to peritoneal dialysis (severe arthritis impairing self-performance) and felt performing it with nursing help would be intrusive. Post dialysis fatigue, poor tolerance, hypotension and intrusiveness in daily life of haemodialysis patients are closely linked to the classic thrice-weekly, four-hour schedule. A personalized incremental dialysis approach, starting with one session per week, adapting the timing to the patient’s daily life, can limit side effects and “dialysis shock”. An individualized approach to complex decisions such as dialysis start can alter the delicate benefit/side-effect balance, ultimately affecting the patient’s choice, and points to a narrative, tailor-made approach as an alternative to therapeutic nihilism, in very old and fragile patients. (shrink)

Organ trafficking is officially banned in several countries and by the main Nephrology Societies. However, this practice is widespread and is allowed or tolerated in many countries, hence, in the absence of a universal law, the caregiver may be asked for advice, placing him/her in a difficult balance between legal aspects, moral principles and ethical judgments.In spite of the Istanbul declaration, which is a widely shared position statement against organ trafficking, the controversy on mercenary organ donation is still open and (...) some experts argue against taking a negative stance. In the absence of clear evidence showing the clinical disadvantages of mercenary transplantation compared to chronic dialysis, self-determination of the patient may conflict with other ethical principles, first of all non-maleficence. The present paper was drawn up with the participation of the students, as part of the ethics course at our medical school. It discusses the situation in which the physician acts as a counselor for the patient in the way of a sort of “reverse” informed consent, in which the patient asks advice regarding a complex personal decision, and includes a peculiar application of the four principles to the donor and recipient parties. (shrink)

The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts. Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals. Concluding remarks examine the similarities and differences among the (...) various approaches and offer a reflection concerning the possibility of a shared resolution to the case. The authors’ efforts to come to a tentative consensus may serve as an example for professionals working in medical contexts that reflect an increasing pluralism of values. This article aims to respond to some of these concerns by illustrating how different methods in clinical ethics would be used when considering a real case. The goal is not to establish the best model on a theoretical level, but to learn from actual practice in order to see if there are common elements in the different methods, and to validate their pertinence to clinical ethics consultation. (shrink)

Ethical climate (EC) has been broadly described as how well institutions respond to ethical issues. Developing a tool to study and evaluate EC that aims to achieve sustained improvements requires a contemporary framework with identified relevant drivers. An extensive literature review was performed, reviewing existing EC definitions, tools and areas where EC has been studied; ethical challenges and relevance of EC in contemporary paediatric intensive care (PIC); and relevant ethical theories. We surmised that existing EC definitions and tools designed to (...) measure it fail to capture nuances of the PIC environment, and sought to address existing gaps by developing an EC framework for PIC founded on ethical theory. In this article, we propose a Paediatric Intensive Care Ethical Climate (PICEC) conceptual framework and four measurable domains to be captured by an assessment tool. We define PICEC as the collective felt experience of interdisciplinary team members arising from those factors that enable or constrain their ability to navigate ethical aspects of their work. PICEC both results from and is influenced by how well ethical issues are understood, identified, explored, reflected on, responded to and addressed in the workplace. PICEC encompasses four, core inter-related domains representing drivers of EC including: (1) organisational culture and leadership; (2) interdisciplinary team relationships and dynamics; (3) integrated child and family-centred care; and (4) ethics literacy. Future directions involve developing a PICEC measurement tool, with implications for benchmarking as well as guidance for, and evaluation of, targeted interventions to foster a healthy EC. (shrink)

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and public (...) health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical (...) research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics. (shrink)

The importance of graduating ethical health professionals is indisputable. Yet evaluating the quality of ethics education programs remains problematic for educators. A divide between learning and integrating ethics in everyday professional practice lies at the heart of this issue. The Ethics in Professional Practice (EPP) project addresses health professions' students’ self-efficacy for ethical practice. Students are cast as central characters in authentic vignettes and complete guided learning activities to facilitate their ethical reasoning skills. A design-based research approach was utilised to (...) create EPP resources and this study focuses on the analysis phase of the design process. The aim was to investigate EPP learning outcomes by developing innovative measures based upon Kirkpatrick’s ( 2006 ) evaluation model: namely, reaction, learning, behaviour and effects. Health professions students from Exercise and Sports Science, Rehabilitation Counselling and Speech Pathology (n = 58) participated in the EPP. Qualitative content analysis of reflective statements demonstrated their ethical sensitivity in four categories: Expectations and Empathy in Quality Care; Managing Overwhelming Demands; Informed, Engaged and Empowered; Access to Flexible Models of Service Delivery. Findings from the Rehabilitation Counselling cohort (n = 16) were explored in-depth using Semantic Differential Scales and demonstrated positive ethical reasoning outcomes. Participants also developed individual, ethical practice goals for professional practica. Qualitative content analysis of these goals demonstrated clear ethical reasoning learning effects. Participants integrated concepts of becoming an ethical professional with effective communication, collaboration, empowerment and quality care. Study outcome measures are critiqued and findings may inform redesign of future ethics education resources. (shrink)

In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and (...) determine a perspective. Second, bioethics and science fiction share the family resemblance of expressing moral beliefs. I then consider how understanding bioethics and science fiction as interrelated discourses can be the basis of a methodology for inquiry into relational autonomy in the context of biotechnologies and medicine. As an example of this methodology, I analyse Fay Weldon’s novel The Cloning of Joanna May. (shrink)

ZusammenfassungDer vorliegende Beitrag erläutert anhand ausgewählter Beispiele das Potential von Dystopien für die Bioethik. Hierfür werden bestehende Ansätze narrativer Ethik kritisch rekonstruiert und erweitert. Mittels eines Theorieangebots aus der Literaturwissenschaft wird vorgeschlagen, moralische Überzeugungen, die Dystopien motivieren, in kohärentistische Reflexions- und Begründungsverfahren einzubeziehen. Weiterhin wird systematisch herausgearbeitet, welches Potential Dystopien durch sozio-kulturell dichte Szenarien, einen zeitgeschichtlichen Kontext und durch eine Sensibilisierung für die moralische Relevanz der Sprache für die bioethische Forschung bieten. Die dargestellten methodologischen Überlegungen bieten zum einen praktische Bezugspunkte (...) für didaktische Ansätze und zum anderen für die öffentliche Deliberation. Die Analyse zeigt jedoch auch, dass Dystopien jenseits einer Illustration oder Warnung eigene moralische Positionen zur Diskussion stellen. (shrink)

This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion (...) on the clinical, legal and social planes. (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with (...) prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

Within bioethics, Kant’s conception of autonomy is often portrayed as excessively rationalistic, abstract, and individualistic, and, therefore, far removed from the reality of patients’ needs. Drawing on recent contributions in Kantian philosophy, we argue that specific features of Kantian autonomy remain relevant for medical ethics and for patient experience. We use contemporary end-of-life illness narratives—a resource that has not been analyzed with respect to autonomy—and show how they illustrate important Kantian themes, namely, the duty to know oneself, the interest in (...) elaborating universalizable principles, and the emphasis on ideals as points of orientation that guide behavior without ever being fully realized. As Kant does, the patient-authors discussed here perceive the end of life as a moment to reflect on the constitutive principles which have governed that life, thereby offering a privileged moment to pursue self-knowledge. We argue that bioethical conceptions of autonomy stand to gain if they revise their conception of Kantian moral philosophy as too formal, abstract, and detached from emotions and personal relationships to be helpfully applied. (shrink)

Advance directives for withholding life-saving treatment are controversial for dementia patients whose previously expressed wishes conflict with their currently expressed desires. To illustrate this ethical dilemma, McMahan conceives a hypothetical case in which an intellectually proud creative woman signs an advance directive stipulating her refusal to receive life-saving treatment if she contracts a fatal condition with dementia. However, when she develops dementia and forgets this advance directive, she contracts pneumonia and now expresses a desire to live. In response to such (...) dilemmas, scholars like Norman Cantor have defended the moral authority of advance directives by giving credence to one’s prior competent wishes over one’s current incompetent preferences. I argue that their arguments, which are rooted in the principle of respect for autonomy, operate under ableist assumptions about incompetent persons and exclude other important features of respect. I propose an ethics of care model as an alternative moral approach that reconceptualises respect as a matter of caring about people’s contemporaneous interests, even if they are not competently conceived. It fosters the virtues of care by encouraging healthcare providers to recognise dementia patients as legitimate narrative agents capable of authoring their own evolving life story. I argue that the ethics of care model not only provides an ethical defence of the creative woman’s current incompetent desire to live despite her advance directive, but also vindicates our moral intuitions about what it means to demonstrate respect to dementia patients. (shrink)

Background In 2021, federal rules from the 21st Century Cures Act mandated most clinical notes be made available in real-time, online, and free of charge to patients, a practice often referred to as “open notes.” This legislation was passed to support medical information transparency and reinforce trust in the clinician-patient relationship; however, it created additional complexities in that relationship and raises questions of what should be included in notes intended to be read by both clinicians and patients. Main Body Even (...) prior to open notes, how an ethics consultant should document a clinical ethics consultation was widely debated as there can be competing interests, differing moral values, and disagreement about pertinent medical information in any given encounter. Patients can now access documentation of these discussions through online portals which broach sensitive topics related to end-of-life care, autonomy, religious/cultural conflict, veracity, confidentiality, and many others. Clinical ethics consultation notes must be ethically robust, accurate, and helpful for healthcare workers and ethics committee members, but now also sensitive to the needs of patients and family members who can read them in real-time. Conclusion We explore implications of open notes for ethics consultation, review clinical ethics consultation documentation styles, and offer recommendations for documentation in this new era. (shrink)

ArgumentsPhysicians who counsel expectant parents about the needs for resuscitation and intensive care for an extremely preterm infant must be able to address many clinical facts and be prepared to face several ethical considerations. Such counseling is generally more than an acquisition of informed consent. It must be guided by ethical principles, values held dear by parents, relational priorities and directed toward an informed and shared decision-making process. Parents may come with a need for clinical facts, a desire that they (...) be heard as they express their values, and to help physicians realize that many are determined to follow a certain path well before such counseling occurs. They may well not be moved by counseling of the physician but still desire to be heard, respected, and allowed to contribute to their newborn’s care plans.ConclusionsRealizing this, the physician can be accepting and develop a trusting relationship with the parents that will be of value throughout the hospitalization regardless of outcome. (shrink)

Background:Even in countries with an opt-out or presumed consent system, relatives have a considerable influence on the post-mortem organ harvesting decision. However, their reflection capacity may be compromised by grief, and they are, therefore, often prone to choose refusal as default option. Quite often, it results in late remorse and dissatisfaction. So, a high-quality reflection support seems critical to enable them to gain a stable position and a long-term peace of mind, and also avoid undue loss of potential grafts. In (...) practice, recent studies have shown that the ethical aspects of reflection are rarely and often poorly discussed with relatives and that no or incomplete guidance is offered. No review of the literature is available to date, although it could be of value to improve the quality of the daily practice.Objectives:The objective was to review and synthesize the main concepts and approaches, theories and practices of ethical reflection support of the relatives or surrogates of potential post-mortem organ donors.Research design:A narrative review was performed in the medical, psychological and ethical fields using PubMed, PsycArticles and Web of Science databases (1980–2020).Results:Out of 150 papers, 25 were finally retained. Four themes were drawn: the moral status of the potential post-mortem organ donor, the principlistic approach with its limits and critics, the narrative approach and the transcendental approach.Discussion:This review suggests an extension of psychological support towards ethical reflection support. The process of helping relatives in their ethical exploration of post-mortem organ donation is psychologically and morally characterized. The need for specialized professionals educated and experienced both in clinical psychology and in health ethics to carry out this task is discussed.Practical impact:This review could contribute to optimize the quality of the ethical reflection support by initiating an evolution from an empirical, partial and individual-dependent support to a more systematized, professionalized and exhaustive support. (shrink)

Trisomy 13 and 18 are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days (...) in the hospital were most likely to accept the invitation. Grounded theory technique was used to analyze the interviews. This method elicited four key themes regarding family perspectives on children with T 13/18: they are unique and significant, they transform the lives of others, their families can feel overwhelmed and powerless in the medical setting, their families are motivated to “carry the torch” and tell their story. Families also emphasized ways in which Internet support groups can provide both positive and negative perspectives. The ensuing discussion explores the difficulties of parents and physicians in forecasting the impact that T 13/18 will have on families and emphasizes a narrative approach to elicit a map of the things that matter to them. The paper concludes that while over-reliance on dire prognostic data can alienate families, examining the voice, character and plot of patient stories can be a powerful way for physicians to foster shared decision-making with families. (shrink)

Rita Charon says that narrative medicine is about honoring stories of illness. In a system where physicians and patients can often feel as though they are reduced to numbers, narrative medicine is a plea to take the narratives of illness seriously. But what does it mean to honor a story? In this essay, I use the framework of narrative medicine to offer narrative reflections on the concept of honor inspired by on three definitions, including respect, moral rightness, and high regard. (...) I explain how each definition illustrates an aspect of honor and its role as an ethical virtue in narrative medicine. (shrink)