The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a (...) triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

It is commonplace that care should be patient-centered. Nevertheless, no universally agreed-upon definition of patient-centered care exists. By consequence, the relation between patient-centered care as such and ethical principles cannot be investigated. However, some research has been performed on the relation between specific models of patient-centered care and ethical principles such as respect for autonomy and beneficence. In this article, I offer a detailed case study on the relationship between specific measures of patient-centered care and the ethical principle of respect (...) for autonomy. Decision Quality Instruments (DQIs) are patient-centered care measures that were developed by Karen Sepucha and colleagues. The model of patient-centered care that guided the development of these DQIs pays special attention to the ethical principle of respect for autonomy. Using Jonathan Pugh’s theory of rational autonomy, I will investigate how the DQIs relate to patient autonomy. After outlining Pugh’s theory of rational autonomy and framing the DQIs accordingly (Part I), I will investigate whether the methodological choices made while developing these DQIs align with respect for autonomy (Part II). My analysis will indicate several tensions between DQIs and patient autonomy that could result in what I call “structural paternalism.” These tensions offer us sufficient reasons, especially given the importance of the ethical principle of respect for autonomy, to initiate a more encompassing debate on the normative validity of Decision Quality Instruments. The aim of the present paper is to highlight the need for, and to offer a roadmap to, this debate. (shrink)

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature of (...) ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research. (shrink)

Chronic diseases are recognized as a leadingcause of mortality, morbidity, health careutilization and cost. A constant tailoring ofcare to the actual needs of individualpatients, complexity and long duration are thedistinguishing features of chronic diseasemanagement.

Patient centred diagnosis is best practised through shared decision making; an iterative dialogue between doctor and patient, whichrespects a patient’s needs, values, preferences, and circumstances. -/- Shared decision making for diagnostic situations differs fundamentally from that for treatment decisions. This has important implications when considering its practical application. -/- The nature of dialogue should be tailored to the specific diagnostic decision; scenarios with higher stakes or uncertainty usually require more detailed conversations.

BackgroundPatient-centred care and patient autonomy is one of the key factors to better quality of service provision, hence patient outcomes. It enables the development of patients’ trusts which is an important element to a better doctor-patient relationship. Given the increasing number of patient disputes and conflicts between patients and doctors in Chinese public hospital, it is timely to ensure patient-centred care is fully and successfully implemented. However, limited studies have examined the views and practice in different aspects of patient-centred care (...) among doctors in the Chinese public hospitals.MethodsA quantitative approach was adopted by distributing paper-based questionnaires to doctors and patients in two hospitals (Level III and Level II) in Jinan, Shandong province, China.ResultsIn total, 614 doctors from the surgical and internal medicine units of the two hospitals participated in the survey yielding 90% response rates. The study confirmed the inconsistent views among doctors in terms of their perception and practice in various aspects patient-centred care and patient autonomy regardless of the hospital where they work (category II or category III), their unit speciality (surgical or non-surgical), their gender or seniority. The high proportion of doctors (more than 20%) who did not perceive the importance of patient consultation prior to determining diagnostic and treatment procedure is alarming. This in in part due to the belief held by more than half of the doctors that patients were unable to make rational decisions and their involvement in treatment planning process did not necessarily lead to better treatment outcomes.ConclusionThe study calls for the development of system level policy and organisation wide strategies in encouraging and enabling the practice of patient-centred care and patient autonomy with the purposes of improving the quality of the service provided to patients by Chinese hospitals. (shrink)

The art of medicine stimulates the attitude of mind which concedes that on certain issues the patient knows what is right for him or her, and the public senses what is best for it. Not because they are right, but because on these issues there is no absolute right. —Anthony MooreThe benefits of fine literature, narrative analysis, and the listening to and telling of stories in education are well known (Carson 2001; Guillemin and Gillam 2006; Hunter 1996; Moore 1978; (...) Nussbaum 1990). Literature must not be overlooked in the planning or the delivery of health education and care. Narrative opens readers’ minds by promoting a plethora of viewpoints about stories and life. Through the facilitation of student-centred activities students can critically mull over central points of the story. In discerning meaning, conversations between students are generated around the crucial question, “Whose story is it?” Coincidentally this question drives, or ought to drive, medical integrity.Practitioners m. (shrink)

In this paper three models of teaching and learning medical ethics are discussed critically, the traditional and revised vocational models, and the patient-centred model. The autonomy-oriented patient-centred ethics of Beauchamp and Childress is rejected in favour of a hermeneutic practical ethics. A performative conception of ethics teaching is recommended as the most appropriate model for use in the theory and practice of ethics pedagogy.

Whereas evidence-based medicine (EBM) encourages the translation of medical research into decision-making through clinical practice guidelines (CPGs), patient-centred care (PCC) aims to integrate patient values through shared decision-making. In order to successfully integrate EBM and PCC, I propose a method of orienting physician decision-making to overcome the different obligations set out by a formally-rational EBM and substantively-rational ethics of care. I engage with Weber’s concepts “the ethic of responsibility” andverstehenas a new model of clinical reasoning that reformulates the relationship (...) between medical knowledge and social values, while demonstrating the relevance of the classical sociological cannon to contemporary medical humanities. (shrink)

BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future (...) scenario-based interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews.ResultsSix themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient.ConclusionThe ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward. (shrink)

This paper explains Viktor von Weizsäcker’s Gestaltkreis model as a reinterpretation of Jakob von Uexküll’s Funktionskreis. Also derived from the Funktionskreis is Thure von Uexküll’s Situationskreis model. Both Weizsäcker’s Gestaltkreis and Thure von Uexküll’s Situationskreis have evolved in the context of integrated medicine in Germany throughout the twentieth century. Focusing on the role of language in health and medicine, this paper addresses important concepts associated with the project of integrated medicine in Germany, especially the biographical approach practiced (...) by Viktor von Weizsäcker and developed by Thure von Uexküll through the concept of the biographical organ. While their efforts to reform the practice of medicine and the training of physicians were unsuccessful, recent research in the psychology of language and health and recommendations for more patient-centered communication resonate with the principles underlying Viktor von Weizsäcker’s and Thure von Uexküll’s integrated medicine. (shrink)

A paramount, yet unresolved issue in personalised medicine is that of automated reasoning with clinical guidelines in multimorbidity settings. This entails enabling machines to use computerised generic clinical guideline recommendations and patient-specific information to yield patient-tailored recommendations where interactions arising due to multimorbidities are resolved. This problem is further complicated by patient management desiderata, in particular the need to account for patient-centric goals as well as preferences of various parties involved. We propose to solve this problem of automated reasoning (...) with interacting guideline recommendations in the context of a given patient by means of computational argumentation. In particular, we advance a structured argumentation formalism ABA+G (short for Assumption-Based Argumentation with Preferences (ABA+) and Goals) for integrating and reasoning with information about recommendations, interactions, patient’s state, preferences and prioritised goals. ABA+G combines assumption-based reasoning with preferences and goal-driven selection among reasoning outcomes. Specifically, we assume defeasible applicability of guideline recommendations with the general goal of patient well-being, resolve interactions (conflicts and otherwise undesirable situations) among recommendations based on the state and preferences of the patient, and employ patient-centered goals to suggest interaction-resolving, goal-importance maximising and preference-adhering recommendations. We use a well-established Transition-based Medical Recommendation model for representing guideline recommendations and identifying interactions thereof, and map the components in question, together with the given patient’s state, prioritised goals, and preferences over actions, to ABA+G for automated reasoning. In this, we follow principles of patient management and establish corresponding theoretical properties as well as illustrate our approach in realistic personalised clinical reasoning scenaria. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:George Engel’s Legacy for the Philosophy of Medicine and PsychiatryBradley Lewis (bio)KeywordsBiopsychosocial model, George Engel, pragmatism, philosophy of medicine, philosophy of psychiatryEach of the respondents to this paper raises critical and important concerns. I am grateful for the quality of their insights. David Brendel’s response, along with his recent book, Healing Psychiatry: Bridging the Science/Humanism Divide, resembles my efforts in several ways. Like Brendel, I too believe (...) that the American pragmatic philosophy can be helpful in healing the splits and divisions within psychiatry. And, like Brendel, I believe that psychiatry would benefit from what he calls the “four ps” of pragmatism. Where we differ with regard to George Engel and his biopsychosocial model seems to be less about philosophy and more about strategy. Brendel argues that Engel was too scientistic in his manifest reasoning to be considered a pragmatist. I agree with this description of Engel. But, strategically, we can go beyond Engel’s manifest reasoning to draw out the implications of Engel’s writings in a pragmatic fashion. I am not saying that Engel did this himself; I am only saying that it is very possible to reinterpret Engel along these lines.Brendel also argues that the biopsychosocial model itself needs improvement. But, just as it is possible to update Engel’s theoretical scaffold, we can also update Engel’s biopsychosocial model. Along the lines of Brendel’s concerns, we can easily revise the model so that we remember that not all problems need complex analysis and interventions. Some problems are relatively simple and can have a simple solution. We can also revise the model so we include questions of consumer participation and the provisional nature of the clinical encounter. I see nothing in the biopsychosocial model that contradicts either of these concerns. Yes, the biopsychosocial model needs to be updated, refurbished, expanded, and reimagined. That is my point in the paper.The traction of Brendel’s concerns is not can we reinterpret Engel? or can we refresh the biopsychosocial model?—of course we can. The traction of his concern seems to be “should we?” To this strategic question, Brendel’s answer is no and my answer is yes. I argue that it is a good idea to refresh and refurbish Engel and his biopsychosocial model because it helps to create a connection with an important tradition within both medicine and psychiatry: the tradition of balanced, broadminded, nuanced, patient-centered and anti-reductionistic [End Page 327] care. This tradition is important because medicine and psychiatry seem perpetually vulnerable to the temptations of reductionist approaches and to what Engel, and Nassir Ghaemi more recently, call “dogmatism” (Engel 1977, 130; Ghaemi, 2003, 301). Whether reductionism and dogmatism take the form of biopsychiatry, or psychoanalysis, or antipsychiatry, or cognitive-behavioral therapy, the problems of dogmatism are the same.I am sure Brendel would agree with this, which is why he raises pluralism to such a prominent position in his own reasoning. The difference is that Brendel believes we can better get to this kind of balanced clinical care by letting go of the past figures like Engel and moving into the bright light of the twenty-first century. Maybe so. But my thinking when I wrote the paper goes the other way around. For me, if clinical medicine and psychiatry more carefully tended to its history and tradition, it would be less likely to fall sway to the next Johnny-come-lately reductionistic model.Jeffery Spike’s memories of George Engel during the years they worked together at the University of Rochester School of Medicine provide a good sense of why Engel is an important figure to remember and to pay homage. As Spike puts it, Engel was not only a “legendary figure” with an “almost mythical diagnostic ability,” Engel “probably had more influence on the philosophy of medicine in the United States than any other person, physician, or philosopher.” Both of these accomplishments help to explain why Engel is worth remembering.Those of us in medicine and psychiatry all know mythical clinicians and teachers—the ones who seem like Michael Jordan used to seem on the basketball court, able to somehow make even... (shrink)

Patient self-management programs have become increasingly popular and are now also receiving official endorsements. This paper analyses two possible types of positive justifications for promoting patient self-management: evidence-based and patient-centred justifications. It is argued that evidence-based justifications, although important politically are deficient and that the primary justification for patient self-management must be a patient-centred justification focusing on the patient’s privileged access to his or her own lived body.

The structure, content, and orientation of the contemporary medical record inadequately reflect the appropriate influence of patients' rights and bioethics on health care. Most tellingly, the medical chart reveals a remarkable absence of attention to medical ethics, except in the case of crisis management. But medical ethics informs both crisis decision-making and virtually all clinical interventions. Indeed, clinical care embodies a complex array of choices influenced by individual and cultural values, themselves reflecting religious beliefs, personal histories, psychologies, and social mores. (...) But the typical medical chart, which records clinical descriptions, analyses, and rationales for treatment, rarely identifies or accounts for this value-laden dimension of care and thus both over-simplifies and distorts the depiction of a patient's illness and its treatment. To better reflect the complex moral domain of clinical care, and assist in organizing its complex structure, a systematic procedure is proposed here to evaluate the ethical status of every patient: As a routine part of the clinical evaluation, in a designated Ethical Concerns section of the medical record, an ?ethics work-uP? is designed to serve as a moral ?diagnostic? analogous to its scientific counterpart. Adapted to the needs of individual patients, such evaluations should identify ethical problems, coordinate related data, resources, and opinion, and define the rationale for choices made and actions pursued. In establishing improved integration of the ?epistemologies? of care and the ?ethics? of care, the goals of a more humane, patient-centered medicine may be better met. (shrink)

It took nearly two thousand years for society to recognize the Hippocratic insistence that “the doctor knows best”1 was an inadequate approach to medical decisionmaking. Today, patient-centered medicine has come to understand that the individual patient has a significant role in the decisionmaking process.2.

Patient-centeredness can be considered a popular, and at the same time “fuzzy”, concept. Scientists have proposed different definitions and models. The present article studies scientific publications that discuss the meaning of patient-centeredness to identify different “discourses” of patient-centeredness. Three discourses are presented; the first is labelled as “caring for patients”, the second as “empowering patients” and the third as “being responsive”. Each of these discourses has different things to say about the why of patient-centeredness; the patient’s identity; the role of (...) the healthcare professional; responsibilities for medical decision-making, and the role of health information. This article compares and contrasts the discourses in ways that allow us to see differences that matter for practitioners in healthcare. On the basis of a relational constructionist philosophy, it is argued that discursive diversity is both an inevitable and a potentially valuable aspect of conversations in healthcare. We are therefore invited to center the challenge of dealing with diversity in productive ways. This article ends with a discussion of the practical implications of the discourse analysis for projects that aim to make healthcare more patient-centered. Debates on patient-centered “Health Information Exchange” are used to explain the need for a recognition of different discourses of patient-centeredness and a reflexive stance towards them. (shrink)

Michel Foucault's analysis of "the birth of the clinic" describes the genesis of a unified discourse that, in retrospect, has shaped western medicine for two centuries. However, in looking prospectively toward a 21st century medicine, Foucault's analysis is necessary but not sufficient. To better critically address medicine and medical education in the era of simulation, we could draw on frameworks developed by futurists such as Jean Baudrillard. Foucault's analysis does not account for contemporary, complex developments of the (...) clinical gaze as the gaze is distributed across practitioners in increasing use of sophisticated, representational diagnostic imaging. Further, Foucault's antihumanist rhetoric sometimes strays into the antihumane, and this is disturbing for those who support the development of patient-centered medicine. Yet we are increasingly teaching aspects of medicine, such as communication, in simulated learning environments in which complex reality is absent, perhaps inadvertently creating an "inhumanity" in medical education. (shrink)

ArgumentThe deficit model of science communication assumes that the creation and dissemination of knowledge is limited to researchers with formal credentials. Recent challenges to this model have emerged among “e-patients” who develop extensive online activist communities, demand access to their own health data, conduct crowd-sourced experiments, and “hack” health problems that traditional medical experts have failed to solve. This article explores the aesthetics of medical media that enact the transition from a deficit model to a patient-driven model of visual representation (...) and health communication. I present a framework for understanding the role of film and video in patient movements by analyzing the historical transition from researchers filming patients as nameless, voiceless human research subjects to patients recording their own health narratives through activist cinematography. By comparing several approaches to patient-centered video, I argue that imperfect production aesthetics play a critically important role in establishing the credibility of health communications. (shrink)

Bioethics' interdisciplinary base -- Patient-centered care -- Evidence-based medicine and pay-for-performance -- Community dialogue -- Overview : bioethics, power, and learning to see -- Cross-cultural concerns -- Race and health disparities -- Disabilities -- Environmental and global issues -- New technologies -- Conclusion.

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)

Patients and their physicians frequently make important health care decisions with incomplete information. Memory fails; records are incomplete; the onset of significant events is confused with other life stories; and even the most basic information about medications, laboratory tests, allergies, and problems is often the result of guesswork. As providers and as patients, we suffer because information vital to health care is not available when and where it is needed. Data required for care are dispersed across various settings and represented (...) in a range of formats; incentives to bring these data together do not exist.In recent years, four specific approaches have emerged to address patient-centered information access. The first model attempts to consolidate all care into a single care delivery and financing system. This model — prevalent in many European countries — is to some degree extant at Kaiser-Permanente and other integrated care and financing systems. This model is ideal if and when one organization is responsible for all care delivery and financing. Such models present “one-stop shopping” for managing health information, coordinating care, communicating with providers and support groups, and ensuring both payment and accountability. (shrink)

Although Western biomedical ethics emphasizes respect for autonomy, the medical decision-making of Muslim patients interacting with Western healthcare systems is more likely to be motivated by relational ethical and religious commitments that reflect the ideals of equity, reciprocity, and justice. Based on an in-depth cross-cultural comparison of Islamic and Western systems of biomedical ethics and an assessment of conceptual alignments and differences, we argue that, when working with Muslim patients, an ethics of respect extends to facilitating decision-making grounded in the (...) patient’s justice-related customs, beliefs, and obligations. We offer an overview of the philosophical contestations of autonomy-enhancing practices from the Islamic tradition of biomedical ethics, and examples that demonstrate a recommended shift of emphasis from an autonomy-centered to a justice-focused approach to culturally competent agency-promotion. (shrink)

The successful delivery of patient-centered care hinges on clinical affiliation for patients' personal needs and experiences. Narrative competence is a mode of thinking and set of actions that widens the clinical gaze beyond logico-scientific cognition. In this article, we investigate a tool that enables clinicians to rehearse their skills in narrative competence. We apply the narrative competence framework developed by the founding practitioners of narrative medicine to personal accounts of illness and patienthood published on the Internet. We describe our (...) use of the five-point framework in the close reading of 214 accounts by people with the life-threatening skin cancer melanoma. (shrink)

Although current literature about the “cure versus care” issue tends to promote a patient-centered approach, the disease-centered approach remains the prevailing model in practice. The perceived dichotomy between the two approaches has created a barrier that could make it difficult for medical students and physicians to integrate psychosocial aspects of patient care into the prevailing disease-based model. This article examines the influence of the formal and hidden curricula on the perception of these two approaches and finds that the hidden curriculum (...) perpetuates the notion that “cure” and “care” based approaches are dichotomous despite significant changes in formal curricula that promote a more integrated approach. The authors argue that it is detrimental for clinicians to view the two approaches as oppositional rather than complementary and attempt to give recommendations on how the influence of the hidden curriculum can be reduced to get a both-cure-and-care-approach, rather than an either-cure-or-care-approach. (shrink)

There is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, (...) is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

In recent years a growing trend has emerged which has argued for a greater priority to be placed upon patient autonomy within the doctor-patient relationship. The patient self determination movement, which first began to emerge in the 1960s, helps to mark the start of this ground swell of patient power sentiment. In keeping with this idea, the recent book by Robert M. Veatch, Patient heal thyself: How the new medicine puts the patient in charge addresses this very idea, arguing (...) for and promoting a new paradigm for medicine which places the patient firmly at the centre of all decision making in terms of medical treatment and care. Veatch is one of the leading bioethicists in the USA, having previously held the position of Senior Associate at the Hastings Center before moving to the Kennedy Institute of Ethics where he has served as director and Professor of Medical Ethics. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

In aged societies, the rise of chronic diseases and the health care costs from the aging population are becoming social and economic problems. The emergence of these problems in health care provides an opportunity to shift from a disease paradigm to a preventive paradigm. A preventive paradigm is realized in the form of patient-centered care, and ICT is recommended in health care services as an appropriate alternative. This article analyzes the ethical problems that could arise in ICT healthcare for the (...) elderly in aged societies by applying the ethics of e-Medicine. The ethics of e-Medicine consists of the principle of the doctor-patient relationship, the principle of responsibility, and the principle of autonomy. (shrink)

BackgroundDespite the recognition that developing artificial intelligence (AI) that is trustworthy is necessary for public acceptability and the successful implementation of AI in healthcare contexts, perspectives from key stakeholders are often absent from discourse on the ethical design, development, and deployment of AI. This study explores the perspectives of birth parents and mothers on the introduction of AI-based cardiotocography (CTG) in the context of intrapartum care, focusing on issues pertaining to trust and trustworthiness.MethodsSeventeen semi-structured interviews were conducted with birth parents (...) and mothers based on a speculative case study. Interviewees were based in England and were pregnant and/or had given birth in the last two years. Thematic analysis was used to analyze transcribed interviews with the use of NVivo. Major recurring themes acted as the basis for identifying the values most important to this population group for evaluating the trustworthiness of AI.ResultsThree themes pertaining to the perceived trustworthiness of AI emerged from interviews: (1) trustworthy AI-developing institutions, (2) trustworthy data from which AI is built, and (3) trustworthy decisions made with the assistance of AI. We found that birth parents and mothers trusted public institutions over private companies to develop AI, that they evaluated the trustworthiness of data by how representative it is of all population groups, and that they perceived trustworthy decisions as being mediated by humans even when supported by AI.ConclusionsThe ethical values that underscore birth parents and mothers’ perceptions of trustworthy AI include fairness and reliability, as well as practices like patient-centered care, the promotion of publicly funded healthcare, holistic care, and personalized medicine. Ultimately, these are also the ethical values that people want to protect in the healthcare system. Therefore, trustworthy AI is best understood not as a list of design features but in relation to how it undermines or promotes the ethical values that matter most to its end users. An ethical commitment to these values when creating AI in healthcare contexts opens up new challenges and possibilities for the design and deployment of AI. (shrink)

Person‐centred care is founded on ethics as a basis for organizing care. In spite of healthcare systems claiming that they have implemented person‐centred care, patients report less satisfaction with care. These contrasting results require clarification of how to practice person‐centred ethics using Paul Ricoeur's ‘Little ethics’, summarized as: ‘aiming for the good life, with and for others in just institutions’. In this ethic Kantian morality is at once subordinate and complementary to Aristotelian ethics because the ethical goal needs to be (...) critically assessed and passed through the examination of the norm in each care situation. This paper presents examples that describes a person‐centred care practice that balance a critical review of care activities based on a conviction of aiming for patients' wellbeing. In contrast to patients' experiences of person‐centred care in real life, research projects have shown that if the clinical performers comprehend and apply the practice of person‐centred ethics, patients report positive outcomes. The implementation of person‐centred care therefore demands that stakeholders and managers enables and requires that healthcare staff study ethics in the same way as studying for example pharmacology is required when handling patients' medicines. (shrink)

Long COVID affects millions of individuals worldwide but remains poorly understood and contested. This article turns to accounts of patients’ experiences to ask: What might narrative be doing both to long COVID and for those who live with the condition? What particular narrative strategies were present in 2020, as millions of people became ill, en masse, with a novel virus, which have prevailed three years after the first lockdowns? And what can this tell us about illness and narrative and about (...) the importance of literary critical approaches to the topic in a digital, post-pandemic age? Through a close reading of journalist Lucy Adams’s autobiographical accounts of long COVID, this article explores the interplay between individual illness narratives and the collective narrativizing (or making) of an illness. Our focus on temporality and suffering knits together the phenomenological and the social with the aim of opening up Adams’s narrative and ascertaining a deeper understanding of what it means to live with the condition. Finally, we look to the stories currently circulating around long COVID and consider how illness narratives—and open, curious, patient-centered approaches to them—might shape medicine, patient involvement, and critical medical humanities research. (shrink)

Although typically implicit, clinicians face an inherent conflict between their roles as medical healers and as providers of technical biomedicine (Scott et al. in Philos Ethics Humanit Med 4:11, 2009). This conflict arises from the tension between the physicalist model which still predominates in medical training and practice and the extra-physicalist dimensions of medical practice as epitomised in the concept of patient-centred care. More specifically, the problem is that, as grounded in a "borrowed" physicalist philosophy, the dominant "applied scientist" model (...) exhibits a number of limitations which severely restrict its ability to underwrite the effective practice of care. Moreover, being structural in character, these problems cannot be resolved by piecemeal modifications of the existing model, nor by an appeal to evidence-based medicine (Miles in J Eval Clin Pract 15(6):887-890, 2009; Miles in Folia Med 55(1):5-24, 2013; Miles et al. in J Eval Clin Pract 14(5):621-649, 2008). Hence, the need for medical theorists to "partner with experts in the humanities to build a sui generis philosophy of medicine" (Whatley in J Eval Clin Pract 20(6):961-964, 2014, p. 961). In response, the present paper seeks to vindicate the merits of hermeneutically-informed template in providing the requisite grounding. While capable of correcting for the limitations of the applied scientist model, a hermeneutically-informed template is a "both/and" approach, which seeks to complement rather than exclude the physicalist dimension, and thereby aspires to reconcile technical mastery with patient-centred care, rather than eschew one in favour of the other. As such, it can provide a cogent philosophical template for current best practice, which does justice to the art as well as the science of medical care. (shrink)

Despite substantial controversy, the use of futility judgments in medicine is quite common, and has been backed by the implementation of hospital policies and professional guidelines on medical futility. The controversy arises when health care professionals (HCPs) consider a treatment futile which patients or families believe to be worthwhile: should HCPs be free to refuse treatments in such a case, or be required to provide them? Most physicians seem convinced that professional autonomy protects them from being forced to provide (...) treatments they judge medically futile, given the lack of patient benefit as well as the waste of medical resources involved. The argument from professional autonomy has been presented in a number of articles, but it has not been subjected to much critical scrutiny. In this paper I distinguish three versions of the argument: 1) that each physician should be free to exercise his or her own medical judgment; 2) that the medical profession as a whole may provide futility standards to govern the practice of its members; and 3) that the moral integrity of each physician serves as a limit to treatment demands. I maintain that none of these versions succeeds in overcoming the standard objection that futility determinations involve value judgments best left to the patients, their designated surrogates, or their families. Nor do resource considerations change this fact, since they should not influence the properly patient-centered judgment about futility. (shrink)

Total knee arthroplasty (TKA) is a commonly implemented elective surgical treatment for end-stage osteoarthritis of the knee, demonstrating high success rates when assessed by objective medical outcomes. However, a considerable proportion of TKA patients report significant dissatisfaction postoperatively, related to enduring pain, functional limitations, and diminished quality of life. In this conceptual analysis, we highlight the importance of assessing patient-centred outcomes routinely in clinical practice, as these measures provide important information regarding whether surgery and postoperative rehabilitation interventions have effectively remediated (...) patients’ real-world “quality of life” experiences. We propose a novel precision medicine approach to improving patient-centred TKA outcomes through the development of a multivariate machine-learning model. The primary aim of this model is to predict individual postoperative recovery trajectories. Uniquely, this model will be developed using an interdisciplinary methodology involving non-linear analysis of the unique contributions of a range of preoperative risk and resilience factors to patient-centred TKA outcomes. Of particular importance to the model’s predictive power is the inclusion of a comprehensive assessment of modifiable psychological risk and resilience factors that have demonstrated relationships with TKA and other conditions in some studies. Despite the potential for patient psychological factors to limit recovery, they are typically not routinely assessed preoperatively in this patient group, and thus can be overlooked in rehabilitative referral and intervention decision-making. This represents a research-to-practice gap that may contribute to adverse patient-centred outcomes. Incorporating psychological risk and resilience factors into a multivariate prediction model could improve the detection of patients at risk of sub-optimal outcomes following TKA. This could provide surgeons and rehabilitation providers with a simplified tool to inform postoperative referral and intervention decision-making related to a range of interdisciplinary domains outside their usual purview. The proposed approach could facilitate the development and provision of more targeted rehabilitative interventions on the basis of identified individual needs. The roles of several modifiable psychological risk and resilience factors in recovery are summarised, and intervention options are briefly presented. While focusing on rehabilitation following TKA, we advocate for the broader utilisation of multivariate prediction models to inform individually-tailored interventions targeting a range of health conditions. (shrink)

Most clinicians take for granted a simple, reductionist understanding of medical knowledge that is at odds with how they actually practice medicine; routine medical decisions incorporate more complicated kinds of information than most standard accounts of medical reasoning suggest. A better understanding of the structure and function of knowledge in medicine can lead to practical improvements in clinical medicine. This understanding requires some familiarity with epistemology, the study of knowledge and its structure, in medicine. Michael Polanyi's (...) theory of tacit knowing is advanced as the basis for developing a more accurate understanding of medical knowledge. Tacit knowing, which explores the taken-for-granted background knowledge that underlies all human knowing, is explained in detail with a focus on its relevance for clinical medicine. The implications of recognizing tacit knowing in medicine and medical decisions are discussed. These include the ability to explain the importance of the clinical encounter in medical practice, mechanisms for analysing patient and doctor as persons, and the need for humility given the uncertainty that the tacit dimension injects into all medical decisions. This more robust medical epistemology allows clinicians to better articulate the nature and importance of patient-centred care, to avoid pitfalls inherent in reductionist approaches to medical knowledge, and to think more clearly about the relationships between medicine and health care at the individual and population levels. (shrink)

Amid the controversies surrounding physician-assisted suicides, euthanasia, and long-term care for the elderly, a major component in the ethics of medicine is notably absent: the rights and welfare of the survivor's family, for whom serious illness and death can be emotionally and financially devastating. In this collection of eight provocative and timely essays, John Hardwig sets forth his views on the need to replace patient-centered bioethics with family-centered bioethics. Starting with a critique of the awkward language with which philosphers (...) argue the ethics of personal relationships, Hardwig goes on to present a general statement on the necessity of family-centered bioethics. He reflects on proxy decisions, the effects of elder care on the family, the financial and lifestyle consequences of long-term care, and physician-assisted suicide from the perspective of the family. His penultimate essay, "Is There a Duty to Die?" carries the idea of family-centered ethics to its logical, controversial, conclusion; comments upon this essay from Daniel Callahan, Larry Churchill, Joanne Lynn, and journalist Nat Hentoff offer differing views on this highly charged subject. As advances in medicine prolong patient's lives, the welfare of those ultimately responsible for medical care-the family-must be addressed. Hardwig's courageous and illuminating essays set forth a new direction in bioethics: one that considers the welfare of everyone concerned. (shrink)

American doctors in the 1990s are being asked to serve as "double agents," weighing competing allegiances to patients' medical needs against the monetary costs to society. This situation is a reaction to rapid cost increases for medical services, themselves the result of the haphazard development since the 1920s of an inherently inflationary, open-ended system for funding and delivering health care. The answer to an inefficient system, however, is not to stint on care, but rather to restructure the system to remove (...) the inflationary pressures. As long as we are spending enormous resources on an inherently inefficient and inflationary system we cannot justify asking doctors to withhold beneficial care to save money for third-party payers. Doing so serves a largely political agenda and endangers the patient-centered ethic that is central to medicine. (shrink)

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but (...) limits their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances. (shrink)

Calling on the methodology of psychology, the authors explore the way illness alters the self-image of the sick person, and the way the experience changes the person who is ill. The reader is taken through the psychological impacts of the first clinical moment when the patient realizes he or she is in the altered state of illness, as well as the subsequent effects of pain, hospitalization, being bed-ridden, fatigued or disabled. The central thesis is that an integral picture of (...) class='Hi'>medicine must include social-cultural aspects, the institutionalization of health care, and an attempt to provide patient-centered care. The approach taken is the empirically based psychosocial reflection of the disturbances to a person's self-image caused by various kinds of illness. Focusing on the world of the patient, the authors relate to problems concerning self-image, pain, exhaustion, isolation, handicaps, aging, dying and death. The relationships between patients and medical personnel are also examined. Concluding the work is an excellent bibliography keyed to the chapters of the text. (shrink)