This study is part of a comprehensive investigation of ethical thinking among male and female physicians and nurses. Nine women physicians with different levels of expertise, working in various wards in paediatric clinics at two of the university hospitals in Norway, narrated 37 stories about their experience of being in ethically difficult care situations. All of the interviewees’ narrations were concerned with problems relating to both action ethics and relation ethics. The main focus was on problems in a relation ethics (...) perspective. The most common themes in an action ethics perspective were overtreatment and withholding treatment. The more experienced physicians reasoned differently from the group of less experienced physicians and they coped with pressure in different ways. The less experienced physicians disclosed their professional experience yet seemed uncertain, while putting on an air of certainty, but the more experienced physicians disclosed both their professional and personal experience of caregiving and they seemed to allow themselves to feel uncertain in their certainty. Both groups emphasized a need for deep discussion between colleagues about their being in ethically difficult care situations. (shrink)

BackgroundThis study is part of a major study about difficulties in communicating ethical problems within and among professional groups working in hemodialysis care. Describing experiences of ethically difficult situations that induce a troubled conscience may raise consciousness about ethical problems and thereby open the way to further reflection.The aim of this study was to illuminate the meanings of being in ethically difficult situations that led to the burden of a troubled conscience, as narrated by physicians working in dialysis care.MethodA phenomenological (...) hermeneutic method was used to analyze the transcribed narrative interviews with five physicians who had varying lengths of experience in nephrology.ResultsThe analysis shows that physicians working in hemodialysis care suffered from a troubled conscience when they felt torn by conflicting demands and trapped in irresolution. They faced ethical dilemmas where they were forced to make crucial decisions about life or death, or to prioritize when squeezed between time restraints and professional and personal demands. In these ethical dilemmas the physicians avoided arousing conflicts, were afraid of using their authority, were burdened by moral responsibility and felt devalued and questioned about their way of handling the situation. The findings point to another way of encountering ethical dilemmas, being guided by their conscience. This mean sharing the agony of deciding how to act, being brave enough to bring up the crucial problem, feeling certain that better ways of acting have not been overlooked, being respected and confirmed regarding decisions made.ConclusionThe meanings of being in ethically difficult situations that led to the burden of a troubled conscience in those working in hemodialysis care, indicate the importance of increasing the level of communication within and among various professional groups - to transform being burdened by a troubled conscience into using conscience as a guide - in situations where no way of solving the problem seems to be good. (shrink)

This article explores the disconnection between what pre-professional students expect from college and what their undergraduate education might foster, between the focus on “getting into medical school” and the development of humanistic physicians. It reviews the longstanding challenge inherent in helping pre-meds acquire not only sufficient scientific background but also well-developed interpersonal skills to help them understand patients’ experience of illness and their own interactions with other members of the health care team. Clinical experiences from the NEH Institute are interpreted (...) from the perspective of a pre-med advisor who also teaches literature; they are also incorporated into an undergraduate course on literature about illness. (shrink)

Telling stories after a loved one’s death helps surviving family members to find meaning in the experience and share perceptions about whether the death was consistent with the deceased person’s values and preferences. Opportunities for physicians to evaluate the experience of a patient’s death and to expose the ethical concerns that care for the dying often raises are rare. Narrative medicine is a theoretical perspective that provides tools to extend the benefits of storytelling and narrative sense–making to physicians. This case (...) study describes narrative writing workshops attended by physicians who care for dying patients. The narratives created revealed the physicians’ concerns about ethics and their emotional connection with patients. This case study demonstrates that even one–time reflective writing workshops might create important opportunities for physicians to evaluate their experiences with dying patients and families. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

Physicians often express frustration with the ‘system’ in which they work. Over time, this frustration may put them at risk of burnout and disengagement, which may impact patient care. In this study, we aimed to understand the nature of the system flaws that physicians identified in their published narratives and to explore their self-representation as agents of change. We reviewed all reflective narratives published in four medical journals between January 2015 and December 2017. By consensus, we identified those (...) that addressed system flaws. Using content and narrative analysis, we analyzed the types of flaws and the physicians’ orientation to the flawed system. We identified seven recurring system flaws—five related to medical culture: failures of communication, erosive impact of the hidden curriculum, inadequate health advocacy, frenzied pace of work, and experience of stigma. Less frequently, physicians’ narratives also exposed limited and disparate healthcare resources and restrictive institutional practices as impeding patient-centered care. Physicians expressed agency to create change foremost when writing about flaws related to medical culture. While physicians are challenged by system flaws, they strive to practice in ways that do not succumb to them. We saw tension between the elements outside the physician’s control and those within it. This tension becomes a source of distress when the compromises that emerge from system flaws move physicians away from the values that define their professional identity. (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)

BackgroundNarrative medicine is a well-recognized and respected approach to care. It is now found in medical school curricula and widely implemented in practice. However, there has been no analysis of the perception and usage of narrative medicine across different medical specialties and whether there may be unique recommendations for implementation based upon specialty. The aims of this study were to explore these gaps in research.MethodsFifteen senior physicians who specialize in internal medicine, pediatrics, or surgery (5 physicians from each specialty) were (...) interviewed in a semi-structured format about the utilization, benefits, drawbacks (i.e., negative consequences), and roles pertaining to narrative medicine. Qualitative content analysis of each interview was then performed.ResultsThree themes emerged from our analysis: roles, practice, and outcomes. Through these themes we examined the importance, utilization, barriers, benefits, and drawbacks of narrative medicine. There was consensus that narrative medicine is an important tool in primary care. Primary care physicians (general internists and general pediatricians) also believed that narrative medicine is not as important for non-primary care providers. However, non-primary care providers (surgeons) generally believed narrative medicine is valuable in their practice as well. Within specialties, providers’ choice of language varied when trying to obtain patients’ narratives, but choice in when to practice narrative medicine did not differ greatly. Among specialties, there was more variability regarding when to practice narrative medicine and what barriers were present. Primary care physicians primarily described barriers to eliciting a patient’s narrative to involve trust and emotional readiness, while surgeons primarily described factors involving logistics and patient data as barriers to obtaining patients’ narratives. There was broad agreement among specialties regarding the benefits and drawbacks of narrative medicine.ConclusionsThis study sheds light on the shared and unique beliefs in different specialties about narrative medicine. It prompts important discussion around topics such as the stereotypes physicians may hold about their peers and concerns about time management. These data provide some possible ideas for crafting narrative medicine education specific to specialties as well as future directions of study. (shrink)

A number of studies show that when doctors become ill, there is often ambiguity in the division of roles and responsibilities in the medical encounter. Yet little is known about how the dilemma of the sick doctor has changed over time. This article explores the experience of illness among physicians by applying an historical, narratological approach to three doctor’s narratives about personal cases of cardiac disease: Max Pinner’s from the 1940s, Robert Seaver’s from the 1980s, and John Mulligan’s from (...) 2015. Drawing on Erving Goffman’s principles of social interaction, I argue that part of the challenge in the analysed narratives is because when doctors seek medical attention for themselves, the ensuing medical ‘drama’ suffers. I compare the three narratives to argue that the experience of becoming a patient while simultaneously remaining a doctor is a challenge that has changed over time. In Pinner’s narrative, the patient identity is both undesirable and inaccessible; in Seaver’s, role ambivalence between doctor and patient is the most salient feature; for Mulligan, his personal rather than professional experience of illness is the overarching theme of the narrative. Finally, I suggest that an awareness of how the medical drama often changes when doctors are patients might prove beneficial both for the doctor-patients and providers of medical care. (shrink)

The point of departure is the empirical research by Marwijk, Haverkate, Van Royen and The. Starting from qualitative interviews, the act of euthanasia seems to be for the physician problematic and even traumatic, also in countries where euthanasia is a legal option. This emotional contrast-experience is an important locus for the ethical reflection. I will discuss one topic of the conclusion of the research: what is the place, meaning and limit of the moral integrity of the practitioner? In the (...) act of euthanasia, a relation of many years based on trust is often presupposed by the physician in order to legitimate morally his involvement in the act of euthanasia. At the same time, physicians experience an inconsistent relation between their acting and their personal emotional and moral experience. The legal possibility to refuse the involvement in the euthanasia, doesn’t take away the ethical unrest and physicians can experience to leave their patients to fend for themselves. Can the responsibility and the loyalty towards the patient implicate that one passes over his own moral integrity? A one-sided interpretation of the ethics of Levinas could suggest a positive answer to this question. A choice for the concrete goodness happens in the face-to-face relation with the other. The other’s interest and not the own existing values are decisive. This could lead to the suggestion of an absolute presence for the other. The own moral integrity is subordinated towards the ethical responsibility for the other. To this kind of reasoning, we put two questions: Every form of responsibility presupposes a moral integrity. The autonomy and the conscience of the physician is presupposed for taking up the responsibility towards the patient. It cannot be annihilated by the faithfulness and responsibility. The physician is not only responsible for the patient who is asking euthanasia, but also for his other patients. The act of euthanasia has consequences for his moral attitudes towards the third parties. The problem will be elaborated in a discussion with the concept of responsibility as developed by Emmanuel Levinas and Cathérine Chalier. The argument is based on a critical-philosophical reading of some biblical texts. The conclusion is relevant for the evaluation of the moral integrity of the physician as well as for the application of Levinas’ concept of responsibility in the field of biomedical ethics. (shrink)

Loneliness in medicine is a serious problem not just for patients, for whom illness is intrinsically isolating, but also for physicians in the contemporary condition of medicine. We explore this problem by investigating the ideal physician-patient relationship, whose analogy with friendship has held enduring normative appeal. Drawing from Talbot Brewer and Nir Ben-Moshe, we argue that this appeal lies in a dynamic form of companionship incompatible with static models of friendship-like physician-patient relationships: a mutual refinement of embodied virtue (...) that draws both persons together. The ideal physician-patient relationship has a dialectical character that fosters each member's improvement of phenomenologically recognizing and embodying moral virtues. A key component of this dynamic is a commitment to the common goal of the patient's health, realized through joint interactivities and conversations over time. The physician's presence to the patient's suffering—understood best as an alienating phenomenological condition for the patient—orients and discloses possibilities for virtuous caregiving by structuring the meanings of the goals, conversations, and joint narrative constitutive of their relationship. Presence to suffering, paradoxically, is perhaps an important prerequisite for this dynamic partnership. These activities dialectically build an interpretive horizon of understanding through which moral goods and character refinement—in and for the other—may become revealed for both persons in their shared being-in-the-world. This analysis of suffering, mood, and revealing of (possible) moral goods has implications for addressing the modern problem of loneliness for patients and physicians, who are increasingly inhibited from building flourishing relationships with each other. (shrink)

Physicians, registered nurses and enrolled nurses engaged in geriatric and surgical care at a large hospital in Sweden gave 180 accounts of morally difficult care episodes. In total, the ENs gave 78, the RNs 55 and the physicians 47 accounts; there were 83 from geriatric care and 97 from surgical care. Forty-nine participants were male, and 59 were female; there were no differences in gender in the form and content of the moral reasoning disclosed in either morally difficult care episodes (...) or in the complete interviews when coded as mainly narrative or propositional, or as showing a care or a justice orientation. The ENs showed a care orientation, while RNs and physicians, to an equal degree, showed both a justice and a care orientation. The ENs also used narrative reasoning more often than RNs and physicians. No differences were seen between the two health care specialties. (shrink)

Extending literature on health information to entertainment television, we analyze the prostate cancer narrative presented in the police drama, NYPD Blue. We explain how the physician-patient interaction depicted on the show followed (and sometimes did not follow) the medical dialogue model. Findings reveal that the producers of this show advocate a more dialogic model of medical interaction. Portrayals of incompetent, ineffective physicians are contrasted with the superior, effective efforts of other physicians. The audience learns that a non-dialogic approach characterizes (...) “bad doctors,” while the dialogic method typifies “good doctors.” Likewise, medical professionals can use such texts to enhance physician-patient interaction. (shrink)

This paper responds to a proposal for an intersectional approach to the clinical encounter between patient and medical provider. We agree that an intersectional framework offers new insights and information in the clinical encounter. Intersectionality involves awareness of the physician-patient dynamic, and understanding the various privileges and disadvantages of all parties involved, at a micro and macroscopic level. Yet, this analysis alone is insufficient to aid in the clinical encounter and risks harm. We worry about a clinician making assumptions (...) about her patient’s race, gender, economic status, and how these influence the patient’s own views of her life and health. We argue that a narrative supplement is a necessary element of intersectional clinical encounters. Prioritizing patient narrative curtails assumptions, builds trust, and improves care. (shrink)

Physician religion/spirituality has the potential to influence the communication between physicians and parents of children at the end of life. In order to explore this relationship, the authors conducted two rounds of narrative interviews to examine pediatric physicians’ perspectives (N=17) of how their religious/spiritual beliefs affect end–of–life communication and care. Grounded theory informed the design and analysis of the study. As a proxy for religiosity/spirituality, physicians were classified into the following groups based on the extent to which religious/spiritual language (...) was infused into their responses: Religiously Rich Responders (RRR), Moderately Religious Responders (MRR), and Low Religious Responders (LRR). Twelve of the 17 participants (71%) were classified into the RRR or MRR groups. The majority of participants suggested that religion/spirituality played a role in their practice of medicine and communication with parents in a myriad of ways and to varying degrees. Participants used their religious/spiritual beliefs to support families’ spirituality, uphold hope, participate in prayer, and alleviate their own emotional distress emerging from their patients’ deaths. (shrink)

As an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would (...) a philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values. (shrink)

Once upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to stall. The general interest in narrative (...) in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts. (shrink)

Background: ICU patients’ family members are in a new, uncertain, and vulnerable situation due to the patient’s critical illness and complete dependence on the ICU nurses and physicians. Family members’ feeling of being cared for is closely linked to clinicians’ attitudes and behavior. Aim: To explore ICU nurses’ and physicians’ bedside interaction with critically ill ICU patients´ families and discuss this in light of the ethics of care. Research design: A qualitative study using participant observation, focus groups, and thematic narrative (...) analysis. Participants and research context: Data were gathered from July 2017 to August 2019, in four ICUs in Norway through 270 h of fieldwork and seven focus groups with ICU nurses and physicians. Ethical considerations: The Regional Committee for Medical and Health Research Ethics and the Norwegian Centre for Research Data approved the study. Findings: Quality of ICU family care depends on nurses’ and physicians’ attitudes, behavior, and personality traits. Three main themes were identified: being attentive, an active approach, and degree of tolerance. Discussion: The findings are discussed in light of the ethics of care and empirical research from the intensive care environment. Conclusions: This study shows that attentive, active, and tolerant clinicians represent a culture of ethical care that gives families greater freedom of action and active participation in patient care. Clinicians must not bear sole responsibility for this culture; it must have a firm basis in the hospital and ICU and be established through training, interprofessional reflection, and support of clinicians. (shrink)

Trainers played an immensely important role in ancient sports. Yet, they often disappear in the descriptions of great athletic feats in epinician poetry, the poems of praise that celebrated great athletes in the ancient world. This paper examines the manner in which trainers fade from epinician narrative and argues that their disappearance may have to do with the nature of the body and the role of trainers and physicians in the Greek world. Admitting the importance of trainers might challenge the (...) notion that the greatness of athletes stemmed from birth and breeding. The fact that trainers sold their services as commodities would exacerbate this. (shrink)

The moral importance of the ‘intention–foresight’ distinction has long been a matter of philosophical controversy, particularly in the context of end-of-life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating ‘slow euthanasia’. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in-depth interviews to address the use of sedation at the end of life. The (...) majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one's intention, and where there may be some ‘mental gymnastics,’ the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of ‘terminal’ sedation – cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles. (shrink)

Although science supplies medicine's “gold standard,” knowledge exercised in the care of patients is, like moral knowing, a matter of narrative, practical reason. Physicians draw on case narrative to store experience and to apply and qualify the general rules of medical science. Literature aids in this activity by stimulating moral imagination and by requiring its readers to engage in the retrospective construction of a situated, subjective account of events. Narrative truths are provisional, uncertain, derived from narrators whose standpoints are always (...) situated, particular, and uncertain, but open to comparison and reinterpretation. Reading is thus a model for knowing in both morality and clinical medicine. While principles remain essential to bioethics and science must always inform good clinical practice, the tendency to collapse morality into principles and medicine into science impoverishes both practices. Moral knowing is not separable from clinical judgment. While ethics must be open to discussion and interpretation by patients, families, and society, it is nevertheless substantively and epistemologically an inextricable part of a physician's clinical practice. (shrink)

Reflection in medical education is becoming more widespread. Drawing on our Jesuit Catholic heritage, the Loyola University Chicago Stritch School of Medicine incorporates reflection in its formal curriculum and co–curricular programs. The aim of this type of reflection is to help students in their formation as they learn to step back and analyze their experiences in medical education and their impact on the student. Although reflection is incorporated through all four years of our undergraduate medical curriculum, this essay will focus (...) on three areas where bioethics faculty and medical educators have purposefully integrated reflection in the medical school, specifically within our bioethics education and professional development efforts: 1) in our three–year longitudinal clinical skills course Patient Centered Medicine (PCM), 2) in our co–curricular Bioethics and Professionalism Honors Program, and 3) in our newly created Physician’s Vocation Program (PVP). (shrink)

Illness narratives convey a person’s feelings, thoughts, beliefs, and descriptions of suffering and healing as a result of physical or mental breakdown. Recognized genres include fiction, nonfiction, poetry, plays, and films. Like poets and playwrights, musicians also use their life experiences as fodder for their art. However, illness narratives as expressed through popular music are an understudied and underutilized source of insights into the experience of suffering, healing, and coping with illness, disease, and death. Greater attention to the (...) value of music within medical education is needed to improve students’ perspective-taking and communication. Like reading a good book, songs that resonate with listeners speak to shared experiences or invite them into a universe of possibilities that they had not yet imagined. In this article, we show how uncovering these themes in popular music might be integrated into medical education, thus creating a space for reflection on the nature and meaning of illness and the fragility of the human condition. We describe three kinds of illness narratives that may be found in popular music (autobiographical, biographical, and metaphorical) and show how developing skills of close listening through exposure to these narrative forms can improve patient-physician communication and expand students’ moral imaginations. (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)

Comatose survivors of cardiac arrest may die following withdrawal of life-sustaining therapy (WLST) due to poor neurologic prognosis. Family members, acting as surrogate decision makers, are frequently asked to decide whether the patient should continue to receive ongoing life-sustaining therapy such as mechanical ventilation in this context of risk of death following removal. Sometimes, physicians and family members disagree about what is in the patient's best interest, and this conflict causes distress for both families and medical personnel. This article examines (...) themes recorded in the medical records of 24 cardiac arrest patients at Columbia University Medical Center (CUMC) whose families chose to pursue continued life support despite physician recommendations for withdrawal. In documented conversations between patients' families and their providers, the most prominent themes included faith in miracles, the inappropriateness of "playing God," the value of more time with the patient, and differences in how providers and family members perceived the patient's status. (shrink)

Objective: Even when critically ill patients are almost certain to die from their illnesses, there is generally an element of prognostic uncertainty. Little is known about how physicians handle this uncertainty in conversations with surrogate decision makers. We sought to evaluate whether and how physicians discuss prognostic uncertainty with surrogate decision makers of patients who are highly likely, but not certain, to die. Design: We audiotaped and transcribed discussions between clinicians and surrogate decision makers at two major California teaching hospitals (...) from 2006 through 2008. Physicians completed a questionnaire addressing their prognostic estimates for patients' survival to hospital discharge. Participants: We included physicians and surrogates of 12 incapacitated, critically ill patients. Measurements: We analyzed transcripts of discussions in which physicians' estimates of patients' chances of hospital survival were 1% to 5%; we coded whether physicians disclosed the prognostic uncertainty and, if so, how they conveyed that death was highly likely but not certain. Results: Physicians' estimates of short-term survival were 1% to 5% for 12 of the 70 patients enrolled in the original study. In 8 of 12 cases, physicians conveyed prognostic uncertainty by using probabilistic language or by an explicit mention of uncertainty. In four cases, physicians made at least one statement that either implied or was ambiguous about whether death was certain. Conclusion: We observed variability in how physicians handle prognostic uncertainty in their discussions with surrogates of patients who are highly likely, but not certain, to die, including some circumstances in which physicians stated or implied that death was certain. (shrink)

Pain management has no meaning without the stories of men and women, and boys and girls whose lives are dramatically altered by the presence of pain in their own and their loved ones lives. In this narrative section, four people present their perspectives on the enigma and challenge of pain, its power, and our on-going efforts to limit its hold on our lives.In the first story, Dr. Robert McQuillan, an anesthesiologist with Creighton University School of Medicine, conveys the fear some (...) patients suffering chronic pain face when seeking pain medication over the long term. Dr. Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center and immediate past president of the American College of Physicians, recounts the plight of a fellow physician whose pain treatment of a patient led to suspension of his professional license and to personal bitterness after many years of exemplary medical practice. (shrink)

Pain management has no meaning without the stories of men and women, and boys and girls whose lives are dramatically altered by the presence of pain in their own and their loved ones lives. In this narrative section, four people present their perspectives on the enigma and challenge of pain, its power, and our on-going efforts to limit its hold on our lives.In the first story, Dr. Robert McQuillan, an anesthesiologist with Creighton University School of Medicine, conveys the fear some (...) patients suffering chronic pain face when seeking pain medication over the long term. Dr. Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mount Sinai Medical Center and immediate past president of the American College of Physicians, recounts the plight of a fellow physician whose pain treatment of a patient led to suspension of his professional license and to personal bitterness after many years of exemplary medical practice. (shrink)

The move to patient-centered medical practice is important for providing relevant and sustainable health care. Narrative medicine, for example, suggests that patients should be involved significantly in diagnosis and treatment. In order to understand the meaning of symptoms and interventions, therefore, physicians must enter the life worlds of patients. But physicians face high patient loads and limited time for extended consultations. In current medical practice, then, is narrative medicine possible? We argue that engaging patient perspectives in the medical visit does (...) not necessarily require a lengthy interview. Instead, a new orientation to this process that emphasizes dialogue between practitioners and patients should be considered. In this new model, the purpose of the visit is to communicate successfully and develop a mutual understanding of illness and care. (shrink)

By 1999, when Atul Gawande's essay “Whose Body Is It, Anyway?” appeared in The New Yorker, patient autonomy had largely trumped physician paternalism in American medical practice. Gawande uses the stories of actual patients to attempt his counter case for physicians' “talking patients through their decisions.” Toward the end of his essay, Gawande acknowledges that “many ethicists find this line of reasoning disturbing,” but he reassures his readers that “the real task isn't to banish paternalism; the real task is (...) to preserve kindness.”What troubles me, however, is not so much the ethical position Gawande takes but the way he structures his narrative to support his position. “Whose Body Is It, Anyway?” offers an important example for close scrutiny because, in my experience, it so effectively engages readers‐especially medical students‐and persuades them to accept the ethical position it puts forward. Yet Gawande's own reflections about this issue do not stop with this essay. As he has gained clinical experience, he has continued his ethical reflections, and the stories that he tells have changed significantly over the years. I will argue here that close reading and careful narrative scrutiny can alert those who read this essay apart from Gawande's later work to some of the pitfalls in this kind of narrative ethics. (shrink)

Potential conflicts between the roles of physicians and researchers have been described at the theoretical level in the bioethics literature (Czoli, et al., 2011). Physicians and researchers are generally in mutually distinct roles, responsible for patients and participants respectively. With increasing emphasis on integration of research into clinical settings, however, the role divide is sometimes unclear. Consequently, physician–researchers must consider and negotiate salient ethical differences between clinical– and research–based obligations (Miller et al, 1998). This paper explores the subjective experiences (...) and perspectives of 30 physician–researchers working in three Canadian paediatric settings. Drawing on qualitative interviews, it identifies ethical challenges and strategies used by physician–researchers in managing dual roles. It considers whether competing obligations could have both positive and adverse consequences for both physician–researchers and patients. Finally, we discuss how empirical work, which explores the perspectives of those engaged in research and clinical practice, can lead the way to understanding and promoting best practice. (shrink)

Cultural appropriateness has become an important conceptual tool for health care professionals serving diverse patient populations. Physicians and other health care providers working in urban communities are increasingly challenged to provide care that is responsive to the health needs and beliefs of immigrants, refugees and other newcomers to mainstream health services. This paper argues that notions of cultural 'sensitivity' or 'competency' help health practitioners acknowledge professional and biomedical biases, but also risk dehistoricizing and hence disempowering newcomers by failing to recognize (...) culture as a dynamic process. Without attention to the ways in which newcomers actively produce culture and make sense of illness experience, health care workers ignore the contexts in which people. become ill and hence cannot act as healers. By presenting the case of one newcomer to the Canadian health care system, I argue that narratives provide a valuable tool for health practitioners to understand how newcomers actively engage and come to terms with illness, without defining them as determined by a set of cultural beliefs or practices. (shrink)

ABSTRACT:The bioethics literature has paid little attention to resistance to COVID-19 vaccination, despite the safety and effectiveness of vaccines and the heavy death toll of the virus. A narrative approach to the problem might begin with descriptions of good and bad narratives about vaccination. Bad stories about vaccination tend to be constructed backwards, starting with the desired conclusion (vaccination is dangerous or ineffective) and from that filling in needed "facts" to support the conclusion. Physicians need to act in more (...) trustworthy ways in order to convince at least some patients to consider vaccination. (shrink)

Mary was angry. Youre going to take my pain medications away, aren't you? These were the first words she spoke as I walked into the examining room. Mary had a complex medical history, beginning with a back injury in 1988 that led to several surgical procedures, multiple injections of local anesthetic and corticosteroids, and placement of a dorsal column stimulator, none of which provided significant relief of her pain. Crippled by severe and sharp pain in her lower back and left (...) leg, she had sought help from several physicians, and had most recently been referred to me specifically, as she put it, to take away the pain medications.Not that the pain medications had afforded Mary a normal life by any stretch of imagination. She was taking eight to ten moderate strength opioid tablets per day in an effort to decrease her pain. She was not active, choosing to spend most of her time at home. She had quit her job shortly after the work-related accident. In fact, the workman's compensation board is still disputing her claim, and this dispute took a toll on Mary. (shrink)

Mary was angry. Youre going to take my pain medications away, aren't you? These were the first words she spoke as I walked into the examining room. Mary had a complex medical history, beginning with a back injury in 1988 that led to several surgical procedures, multiple injections of local anesthetic and corticosteroids, and placement of a dorsal column stimulator, none of which provided significant relief of her pain. Crippled by severe and sharp pain in her lower back and left (...) leg, she had sought help from several physicians, and had most recently been referred to me specifically, as she put it, to take away the pain medications.Not that the pain medications had afforded Mary a normal life by any stretch of imagination. She was taking eight to ten moderate strength opioid tablets per day in an effort to decrease her pain. She was not active, choosing to spend most of her time at home. She had quit her job shortly after the work-related accident. In fact, the workman's compensation board is still disputing her claim, and this dispute took a toll on Mary. (shrink)

Objective Although patients exercise greater autonomy than in the past, and shared decision making is promoted as the preferred model for doctor-patient engagement, tensions still exist in clinical practice about the primary locus of decision-making authority for complex, scarce, and resource-intensive medical therapies: patients and their surrogates, or physicians. We assessed physicians’ attitudes toward decisional authority for adult venoarterial extracorporeal membrane oxygenation (VA-ECMO), hypothesizing they would favor a medical locus. Design, Setting, Participants A survey of resident/fellow physicians and internal medicine (...) attendings at an academic medical center, May to August 2013. Measurements We used a 24-item, internet-based survey assessing physician-respondents’ demographic characteristics, knowledge, and attitudes regarding decisional authority for adult VA-ECMO. Qualitative narratives were also collected. Main Results A total of 179 physicians completed the survey (15 percent response rate); 48 percent attendings and 52 percent residents/ fellows. Only 32 percent of the respondents indicated that a surrogate’s consent should be required to discontinue VA-ECMO; 56 percent felt that physicians should have the right to discontinue VA-ECMO over a surrogate’s objection. Those who self-reported as “knowledgeable” about VA-ECMO, compared to those who did not, more frequently replied that there should not be presumed consent for VA-ECMO (47.6 percent versus 33.3 percent, p = 0.007), that physicians should have the right to discontinue VAECMO over a surrogate’s objection (76.2 percent versus 50 percent, p = 0.02) and that, given its cost, the use of VA-ECMO should be restricted (81.0 percent versus 54.4 percent, p = 0.005). Conclusions Surveyed physicians, especially those who self-reported as knowledgeable about VA-ECMO and/or were specialists in pulmonary/ critical care, favored a medical locus of decisional authority for VA-ECMO. VA-ECMO is complex, and the data may (1) reflect physicians’ hesitance to cede authority to presumably less knowledgeable patients and surrogates, (2) stem from a stewardship of resources perspective, and/or (3) point to practical efforts to avoid futility and utility disputes. Whether these results indicate a more widespread reversion to paternalism or a more circumscribed usurping of decisional authority occasioned by VA-ECMO necessitates further study. (shrink)

We surveyed selected physician members of the Society for Health and Human Values (SHHV) to study the benefits and problems of combining a medical career with a strong scholarly interest in the humanities. The 19 usable narrative responses characterized major benefits as experiential base and teaching opportunities. Barriers were numerous and fell under the general headings of: lack of time; lack of institutional rewards; lack of money for research and scholarship; lack of support from humanities peers; lack of suport (...) from medical colleagues; personal financial sacrifice; and lack of training. Some respondents offered creative solutions to these problems, including assertive negotiation of a job description, identification of helpful mentors, and various networking and administrative strategies. The survey results, while preliminary, suggest ways in which SHHV can assist clinicians who wish to develop a serious commitment to humanities study and teaching. (shrink)

Narrative theory is a dynamic and evolving field of inquiry that has made tremendous inroads in the medical humanities over the past 40 years. Numerous authors have popularized the idea that “thinking narratively” can produce important insights about the illness experience for physician and patient alike. This paper draws on aspects of narrative theory to emphasize the moral responsibilities that arise when we step into another person's life narrative, becoming a character in her or his story. This has especially (...) significant ethical implications for the physician–patient encounter in that each character in this shared story experiences time somewhat differently. This gives rise to the notion of “slow motion ethics” and a somewhat unique perspective on the moral responsibilities clinicians bear toward their patients. (shrink)

I graduated from medical school in 1957. I first went into hospital practice for 3½; years, and then went to Africa for 5 years before returning to Holland to resume practicing as a Family Physician. I have also participated in the postgraduate training and education for family doctors in Amsterdam, Currently, there are approximately 2,300 patients in my practice, about average for a Dutch physi- cian. Ten percent of those patients are over the age of 65.

The author discusses the postmodernist claim that the grand theories have lost credibility, even in the field of medical science and practice. Rather than representing a shared reality among physician and patient, illness represents two quite distinct realities — the meaning of one being significantly and distinctively different from the meaning of the other. However, existential clinical narratives can function as important bridges between the world of the patient and the world of the physician. Such narratives (...) provide important information regarding the patient's biographical situation and, particularly, the personal and cultural meanings which are a function of the biographical situation. At the same time, these narratives provide physicians with useful information for the practice of medicine. (shrink)

Physicians, registered nurses (RNs) and enrolled nurses (ENs) engaged in geriatric (n = 49) and surgical (n = 59) care at a large hospital in Sweden gave 180 accounts of morally difficult care episodes. In total, the ENs (n = 40) gave 78, the RNs (n = 38) 55 and the physicians (n = 30) 47 accounts; there were 83 from geriatric care and 97 from surgical care. Forty-nine participants were male, and 59 were female; there were no differences in (...) gender in the form and content of the moral reasoning disclosed in either morally difficult care episodes or in the complete interviews when coded as mainly narrative or propositional, or as showing a care or a justice orientation. The ENs showed a care orientation, while RNs and physicians, to an equal degree, showed both a justice and a care orientation. The ENs also used narrative reasoning more often than RNs and physicians. No differences were seen between the two health care specialties. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:(P)rescription Narratives: Feminist Medical Fiction and the Failure of American Censorship. by Stephanie Peebles TaveraEtta M. MaddenStephanie Peebles Tavera. (P)rescription Narratives: Feminist Medical Fiction and the Failure of American Censorship. Edinburgh: Edinburgh University Press, 2022. Hardback, xii + 220 pp. ISBN 978-1-4744-9319-2.Utopian Studies readers first saw Stephanie Peebles Tavera’s work in print in her 2018 essay on reproductive health in Charlotte Perkins Gilman’s Herland. More recently, (...) in (P)rescription Narratives, she gives readers a view of the much broader historical scope of her scholarship in literary and cultural studies. Tavera’s analysis of what she labels “feminist medical fiction” considers not only novels and short stories but also literary reviews, dramas, and documentary films, many of which will be unfamiliar to readers of utopian and dystopian literature. Yet the book contextualizes the ways in which these works capture the “utopian possibilities” of women writers who pushed for breaking the boundaries of the dystopian strictures of embodied life. The literary works “rescript” what had been prescribed by others as “normalized behavior,” from the latter-nineteenth century through the Progressive Era (5, 37). As Tavera illustrates through her detailed analysis, these women’s narratives provide “interventions that... interrupt the dissemination of false [End Page 612] narratives of the female body” and “alter the course of cultural development toward greater inclusivity” (5).To establish the temporal boundaries for the project, Tavera emphasizes the Comstock Law, established in 1873, and the death of its author Anthony Comstock in 1915. While Comstock’s work often has been understood as restricting pornography, she explains the Comstock Law as more than merely that. Comstock sought to control what he and others saw as sexual deviation, which included birth control in any form. Tavera also bookends the project with lawsuits associated with Victoria Woodhull and Margaret Sanger, both women who advocated for abortion and birth control as means of allowing women to avoid the strictures over their bodies. Additionally, she explains, Comstock’s racism caused him to completely overlook Black women, ironically allowing a space in which Black women’s feminist medical fiction especially rescripts “normalized behavior” (37)—a topic she pursues in two parts of the book.The book follows a roughly chronological path as it examines four topics related to women’s health, brilliantly organized into “(p)rescriptions,” indicated by Rx, rather than chapters with numbers. Rx1, “Crip Medicine,” illustrates how authors such as Charlotte Perkins Gilman pointed to the socially constructed status of “hysteria” in a patriarchal culture that saw women as deviant by nature. Instead, these authors advocated for a more holistic examination of women’s health, impacted by the environments in which they lived. Drawing from Lyman Tower Sargent’s widely accepted view of utopianism as dreaming of a place “considerably better than the society in which the author lived,” she underscores “the utopian impulse underlies much of the work of feminist medical fiction” (39). In particular, writers of feminist medical fiction were “driven by failure.”Perhaps most familiar to illustrate this point is Gilman’s work, such as “The Yellow Wallpaper,” which illustrated how the culture failed certain characters. The narrator of that story suffers postpartum depression and is made worse by Dr. S. Weir Mitchell’s rest cure. Consequently, Gilman proceeded to write other works, such as Moving the Mountain (1911) and then Herland (1915), which push readers to envision “alternative societies” without such destructive patriarchal medical practices (39). But Tavera also explains how Louisa May Alcott’s Eight Cousins, or the Aunt-Hill (1875) critiques contemporary culture by providing a “domestic utopia” in the female domain of Aunt-Hill, wherein the male Dr. Alec Campbell demonstrates “a better way... of caring for the female body” (55). And another key example is Rebecca Harding [End Page 613] Davis’s Kitty’s Choice: A Story of Berrytown (1875). Berrytown is described as “the Utopia in actual laths, orchards, and bushel-measures of the advance guard of the reform party in the United States” (qtd. in Tavera 55). Through its two physicians, Dr. Muller and Dr. McCall, who represent homeopathic and allopathic practitioners, readers see that the society... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Moral Distress for the Physician AssistantSharyn L. KurtzMy morning rounds as an inpatient medical oncology physician assistant began as usual. I arrived at the hospital early to receive 7 a.m. sign out from the covering resident. The overnight report began favorably. All patients remained stable. Even my patient, whom I will call Mrs. Walker,* had a quiet night. However, given her tenuous admission presentation, including altered mental (...) status, hypercalcemia (high levels of calcium in the blood), atrial fibrillation with rapid ventricular response (irregular, rapid heart function), widespread metastatic lung cancer, and recent neurosurgery to stabilize her spine, I decided to prioritize Mrs. Walker’s morning evaluation.Examining her medical chart proved reassuring. Her tachycardia (rapid heart rate) had been better controlled over the past two days. Her hypercalcemia had been treated, such that she was no longer somnolent. In fact, she was now arousable, conversant, and able to offer some input regarding her healthcare wishes. However, because she was experiencing intermittent delirium, her husband continued to act as her primary medical decision–maker.As her health care proxy, Mr. Walker had experienced conflict with the medical team during his wife’s prior hospital admission. However, even though Mr. Walker lived greater than 45 minutes from the hospital and was not able to visit regularly, he and I spoke daily by phone, which allowed me the opportunity to offer regular medical updates. Mr. Walker felt overwhelmed with his wife’s condition, but he was comfortable with the care the medical team had provided thus far. He was encouraged by the small improvements we had noted since her hospital admission five days prior.Mr. Walker stated on hospital admission that he wished for DNR/I orders to be placed, since this cohered with his wife’s previously stated wishes. However, he still wanted “everything else done” in terms of treating his wife’s medical conditions, including treatment of her atrial fibrillation, pain, and electrolyte anomalies. Most of all, he hoped Mrs. Walker would soon have increased mobility, which he felt would grant his wife the best quality of life possible. He was adamant that “being active” was what Mrs. Walker wished for, and that she had never wanted to be confined to bed.Mr. Walker’s requests seemed reasonable. Although Mrs. Walker’s lung cancer was widespread, and although many on the medical team felt she would not improve to the point where palliative chemotherapy could be considered, [End Page E13] she had stabilized. Her recent spine surgery had been successful, and she was healing adequately. The neurosurgeons had cleared Mrs. Walker for increased activity out of bed as soon as she could be fitted with a lumbar brace. The pain and palliative care specialists felt that Mrs. Walker’s residual back pain and delirium could be well managed with oral medications.Prior to my entering Mrs. Walker’s room to begin her physical evaluation, I was met by her seasoned nurse, whom I will call Amy. “Sharyn,” Amy warned, “Mrs. Walker’s heart rate is 150 and she is complaining of chest pain.” I entered Mrs. Walker’s room, and she was notably uncomfortable, grasping her chest. The monitor showed that Mrs. Walker’s heart rate was in fact in the 150’s. She was pale, short of breath, and wheezing. “Mrs. Walker,” I asked, “how severe is your chest pain on a scale from 1 to 10?” Mrs. Walker replied, “Nine.” I asked Amy to obtain an EKG, to provide oxygen, and to administer an IV medication that would slow Mrs. Walker’s heart rate. I stepped out of the room to place the computer orders, and I paged my attending physician to let him know about Mrs. Walker’s change in status. After hearing the update, my attending physician, whom I will call Dr. Clark, stated that he agreed with all of my treatment decisions thus far. He was on his way into the hospital. I planned out my next steps with him on the phone and returned to the patient’s room.The monitor gave evidence that Mrs. Walker’s heart rate was improving. Mrs. Walker reported that her pain was now “4 out of... (shrink)

Three female physicians were interviewed as part of a comprehensive investigation into the narratives of female and male physicians and nurses, concerning their experience of being in ethically difficult care situations in the care of elderly people. The interviewees expressed great concern for the low status of care for elderly people, and the need to fight for the specialty and for the care and rights of their patients. All the interviewees’ narratives concerned problems relating to perspectives of both (...) action ethics and relational ethics. The main focus was on problems concerning the latter perspective, expressed as profound concern and respect for the individual patient. Secondary emphasis was placed on relationships with relatives and other professionals. The most common themes in an action ethics perspective were too little treatment and the lack of health services for older patients, together with overtreatment and death with dignity. These results were discussed in the light of Løgstrup’s ethics, which emphasize that human life means expressing oneself, in the expectation of being met by others. Both Ricoeur’s concept of an ethics of memory and Aristotle’s virtue ethics are presented in the discussion of too little and too much treatment. (shrink)

Medicine and the humanities have been exploring new ways to improve the quality of healthcare. One such collaboration is the practice of narrative medicine which uses literature to teach physicians to better meet their patients’ needs. Narrative medicine, however, draws primarily from Anglophone literature, yet post-war French literature, philosophy and criticism have much to add to the theoretical and practical underpinnings of narrative medicine. As well, such scholarship provokes a number of questions that expose certain weaknesses in narrative medicine as (...) it is practiced currently. As this paper demonstrates, drawing post-war French literature into narrative medicine opens new ways to think about life, narrative and the place of the patient in the modern healthcare system. (shrink)

This paper argues that the newspaper Notre Journal enshrined the importance of narrative in the revolutionary psychiatry of its founder and editor, Frantz Fanon. Anchoring my analysis in the interdisciplinarity of the medical humanities, I demonstrate how care at Hôpital Blida-Joinville in colonial Algeria was mediated by the written word. I examine Fanon’s physician writing and editorial texts detailing the use of narrative approaches in the clinic. As an object of care, Notre Journal’s promotion of psychic healing, social actions, (...) and engaged professional practice shaped the interactions and experiences of patients and staff. Printed and distributed to the wider institution, the newspaper created community—during an oppressive French Occupation and at the outset of the War of Independence—in addition to nurturing creativity, curiosity, solidarity, and accountability. Still, Fanon would come to recognize the limits of narrative methods amidst cultural oral traditions, illiteracy, and divergent attitudes about narrating the self. (shrink)