It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

Based on Medicine as a human experience / David E. Reiser, David H. Rosen. c1984.

Advanced AI systems are rapidly making their way into medical research and practice, and, arguably, it is only a matter of time before they will surpass human practitioners in terms of accuracy, reliability, and knowledge. If this is true, practitioners will have a prima facie epistemic and professional obligation to align their medical verdicts with those of advanced AI systems. However, in light of their complexity, these AI systems will often function as black boxes: the details of their contents, calculations, (...) and procedures cannot be meaningfully understood by human practitioners. When AI systems reach this level of complexity, we can also speak of black-box medicine. In this paper, we want to argue that black-box medicine conflicts with core ideals of patient-centered medicine. In particular, we claim, black-box medicine is not conducive for supporting informed decision-making based on shared information, shared deliberation, and shared mind between practitioner and patient. (shrink)

This article addresses some critical aspects of the relationship between aesthetic medicine (AM) and ethics and proposes a possible deontological ethical line to pursue based on current practices. The role of AM has always been controversial and suffers from unclear practical and moral boundaries, even within academic settings, since it aims to improve the appearance of individuals, not to cure a disease. Today, it is essential and pertinent to discuss these issues, as AM specialists are dealing with a growing (...) and increasingly demanding patient population that has undergone profound evolution in recent years. Current challenges within the field of AM include a lack of global uniformity concerning the education of AM specialists, an increasing number of physicians practicing AM with diverse training backgrounds, the spread of AM being practiced outside of medical practice or hospital settings, and the influence of social media where the success is modelled and dictated by the identification of a youthful appearance). By the field of action enriched by technologies that aim not only at enhancement per se but also at the preservation and regeneration of tissues, it is necessary to establish an active multidisciplinary discussion on the definition of shared ethical limits. This discussion would allow AM to fully reclaim its identity as a specialty that aims to improve patient well-being whilst maintaining respect for patient aesthetic harmony, the expertise of specialists who practice AM, the essential role of safety, and awareness of the importance of a confidential doctor−patient relationship. (shrink)

Background The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient- (...) class='Hi'>centered empirical research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design. (shrink)

Patient-Centered Care and Cultural Practices: Process and Criteria for Evaluating Adaptations of Norms and Standards in Health Care Institutions Content Type Journal Article Pages 327-339 DOI 10.1007/s10730-009-9115-8 Authors Matthew R. Hunt, McMaster University Department of Clinical Epidemiology and Biostatistics Montreal Canada Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 21 Journal Issue Volume 21, Number 4.

Background An increasing number of studies on physicians’ professionalism have been done since the 2002 publication of Medical Professionalism in the New Millennium: A Physician Charter. The Charter proposed three fundamental principles and ten responsibilities. However, most studies were done in developed countries, and few have been done in China. Additionally, few studies have examined the effect of patient-centered hospital culture (PCHC) on physicians’ professionalism. We aimed to investigate physicians’ medical professionalism in public hospitals in China, and to (...) assess mediating effect of professional attitudes in the relationship of PCHC with professional behaviours. Methods Self-administered questionnaires including professional attitudes (20 items) and behaviours (10 items) survey and PCHC scale (22 items) were given to clinical physicians in five public hospitals, China. The mediating effect of professional attitudes in the relationship of PCHC with professional behaviours was tested. Result 232 valid questionnaires were collected. More than 90% (208) respondents agreed with 15 of 20 specific statements on medical professionalism. As for the responsibility of improving quality of care, 54 (23%) respondents disagreed with reporting of incompetent colleagues and as for the responsibility of maintaining professional competence, 49 (21%) disagreed with recertification. More than 185 (83%) respondents reported that they sometimes, usually, or always showed the four positive behaviours on the questionnaire, and 173 (77%) reported that they never showed the six negative behaviours. Mediating effect analysis revealed that two dimensions of PCHC (i.e. value/institution culture and behaviour/material culture) had a significant positive impact on physicians’ professional behaviour, and professional attitude played a complete mediation role between them, but another dimension of PCHC (i.e. negative evaluation of hospital) directly affected professional behaviour without influencing professional attitude. Conclusion Chinese physicians showed positive professional attitudes and behaviours. Different dimensions of PCHC affected physicians’ attitudes and behaviours in different ways. (shrink)

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can provide a stronger conceptual basis for (...) patient-centered care.This thesis begins with a critical interpretive review of the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)

Burnout among physicians, nurses, and students is a serious problem in U.S. healthcare that reflects inattentive management practices, outmoded images of the “good” provider as selflessly ignoring the care of the self, and an overarching rubric of Patient Centered Care that leaves professional self-care out of the equation. We ask herein if expanding PCC to Patient and Professional Centered Care would be a useful idea to make provider self-care an explicit part of mission statements, a major (...) part of management strategies and institutional goal setting, and of educational programs. We offer several practical suggestions for PPCC implementation, including structuring healthcare systems so as to nurture professional meaning, integrity, and inter-personal reflective emotional processing as a buffer against burnout and as a key to better patient care. It should not bring into question the primacy of practitioner commitment to the good of patients, nor should it be taken to suggest in any way a shift in focus away from patients’ values and respect for patient autonomy. PPCC asserts that the respect for patient’s values and autonomous choices properly remains the ethical benchmark of modern healthcare systems, along with altruistic professional commitment to the optimal care of patients. However, it enunciates an explicit commitment to structuring systems that allow for and actively encourage the professional well-being and wellness upon which good patient care depends. (shrink)

Background In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence (...) moral decision-making. Therefore, this study examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined.Methods Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes.Results Approximately, 95% of physicians were patient-centered in explaining the patient’s severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient’s wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions.Conclusions In relatively low-conflict situations, such as the announcement of a patient’s medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice. (shrink)

There is an alarming trend in the field of medicine, whose portents are ominous but do not seem to shake the complacency and merry making doing the rounds. The wants of the medical man have multiplied beyond imagination. The cost of organizing conferences is no longer possible on delegate fees. The bottom-line is: Crores for a Conference, Millions for a Mid-Term. However, the problem is that sponsors keep a discreet but careful tab on docs. All in all, costs of (...) medicines escalate, and quality medical care becomes a luxury. The whole brunt of this movement is borne by the patient. Companies like GlaxoSmithKline, Bayer, Pfizer, Bristol-Myers Squibb, AstraZeneca, Schering-Plough, Abbott Labs, TAP Pharmaceuticals, Wyeth and Merck have paid millions of dollars each as compensation in the last few years. The financial condition of many pharmaceutical majors is not buoyant either. Price deflation, increased Rand D spending, and litigation costs are the main reasons. In the future, the messy lawsuits situation would no longer be restricted to industry. It would involve academia and practising doctors as well. Indian pharma industry captains, who were busy raking in the profits at present, would also come under the scanner. If nothing else, it means industry and docs will have to sit down and do some soul searching. Both short and long-term measures will have to be put into place. Short-term measures involve reduction in i) pharma spending over junkets and trinkets; ii) hype over 'me too' drugs; iii) manipulation of drug trials; iv) getting pliant researchers into drug trials; iv) manipulation of Journal Editors to publish positive findings about their drug trials and launches; v) and for Indian Pharma, to conduct their own unbiased clinical trial of the latest drug projected as a blockbuster in the West, before pumping in their millions. The long-term measures are related to the way biomedical advance is to be charted. We have to decide whether medicine is to become a corporate enterprise or remain a patient welfare centered profession. A third approach involves an eclectic resolution of the two. Such amount of patient welfare as also ensures profit, and such amount of profit as also ensures patient welfare is to be forwarded. For, profit, without patient welfare, is blind. And patient welfare, without profit, is lame. According to this approach, medicine becomes a patient welfare centered professional enterprise. The various ramifications of each of these approaches are discussed in this monograph. (shrink)

This essay critically evaluates the claim that competition in medicine destroys the moral integrity of the traditional patient-physician relationship. The author argues that the traditional patient-centered ethic is indefensible on moral grounds, and that it should be jettisoned in favor of a fiduciary ethic. A fiduciary ethic is found to provide the best defensible account of the patient-physician relationship because it takes seriously the roles economic efficiency, competition, and respect for individual self-determination play in fashioning (...) moral health care delivery. Keywords: competition, patient-physician relationship, fiduciary ethic, patient-centered ethic CiteULike Connotea Del.icio.us What's this? (shrink)

Edmund Pellegrino claims that medical ethics must be derived from a perception of the patient's damaged humanity, rather than from the self-imposed duties of professionals. This essay explores the meaning and examines the challenges to this patient-centered ethic. Social scientific and bioethical interpretations of medicine constitute one kind of challenge. A more pervasive challenge is the ascendancy of managed care, and especially investor-owned, for-profit managed care. A list of questions addressed to patients, physicians and organizations is (...) offered as one means of assessing this threat and moving toward morally trustworthy relationships. (shrink)

Drug discovery traditionally has occurred behind closed doors in for-profit corporations hoping to develop best-selling medicines that recoup initial research investment, sustain marketing infrastructures, and pass on healthy returns to shareholders. Only corporate Pharma has the man- and purchasing-power to synthesize the thousands of molecules needed to find a new drug and to conduct the clinical trials that will make the drug legal. Against this view, individual physician-scientists have suggested that the promise of applied genomics work calls for a new (...) form of social organization in order to speed the generation and understanding of new therapeutics. Recent successes in open source drug discovery show it is possible to produce valuable, empirically adequate, and sustainable collective beliefs without secrecy, proprietary attitudes, initial cooperation from Pharma, or outsized monetary incentives. After reviewing and differentiating these successes, I diagnose the source of this healthy new epistemic strategy. (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)

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)

Background In an effort to improve the quality of medical care, the philosophy of patient-centered care has become integrated into almost every aspect of the medical community. Despite its widespread acceptance, among patients and practitioners, there are concerns that rapid advancements in artificial intelligence may threaten elements of patient-centered care, such as personal relationships with care providers and patient-driven choices. This study explores the extent to which patients are confident in and comfortable with the use (...) of these technologies when it comes to their own individual care and identifies areas that may align with or threaten elements of patient-centered care. Methods An exploratory, mixed-method approach was used to analyze survey data from 600 US-based adults in the State of Florida. The survey was administered through a leading market research provider (August 10–21, 2023), and responses were collected to be representative of the state’s population based on age, gender, race/ethnicity, and political affiliation. Results Respondents were more comfortable with the use of AI in health-related tasks that were not associated with doctor-patient relationships, such as scheduling patient appointments or follow-ups (84.2%). Fear of losing the ‘human touch’ associated with doctors was a common theme within qualitative coding, suggesting a potential conflict between the implementation of AI and patient-centered care. In addition, decision self-efficacy was associated with higher levels of comfort with AI, but there were also concerns about losing decision-making control, workforce changes, and cost concerns. A small majority of participants mentioned that AI could be useful for doctors and lead to more equitable care but only when used within limits. Conclusion The application of AI in medical care is rapidly advancing, but oversight, regulation, and guidance addressing critical aspects of patient-centered care are lacking. While there is no evidence that AI will undermine patient-physician relationships at this time, there is concern on the part of patients regarding the application of AI within medical care and specifically as it relates to their interaction with physicians. Medical guidance on incorporating AI while adhering to the principles of patient-centered care is needed to clarify how AI will augment medical care. (shrink)

In this paper we offer an appreciation and critique of patient-led care as expressed in current policy and practice. We argue that current patient-led approaches hinder a focus on a deeper understanding of what patient-led care could be. Our critique focuses on how the consumerist/citizenship emphasis in current patient-led care obscures attention from a more fundamental challenge to conceptualise an alternative philosophically informed framework from where care can be led. We thus present an alternative interpretation of (...) patient-led care that we call ‘lifeworld-led care’, and argue that such lifeworld-led care is more than the general understanding of patient-led care. Although the philosophical roots of our alternative conceptualisation are not new, we believe that it is timely to re-consider some of the implications of these perspectives within current discourses of patient-centred policies and practice. The conceptualisation of lifeworld-led care that we develop includes an articulation of three dimensions: a philosophy of the person, a view of well-being and not just illness, and a philosophy of care that is consistent with this. We conclude that the existential view of well-being that we offer is pivotal to lifeworld-led care in that it provides a direction for care and practice that is intrinsically and positively health focused in its broadest and most substantial sense. (shrink)

This essay aims to broaden the understanding of the nature of the physician–patient relationship. To do so, the concept of medical philia that Pedro Laín Entralgo proposes is analysed and is considered taking into consideration the relational trait of the human being and the structure of human action as a story of the permanent tension that exists between freedom and truth, where the ontological foundation of the hermeneutic of the "Gift" and the analogy of “Love” as the central dynamic (...) of this action, helps explain the nature of the doctor-patient relationship as a "friendship relationship". This understanding offers a perspective differing from just the utilitarian considerations of current "patient-centred" approaches and proposed the redirection of the teaching of medicine to more humanistic approaches. The dynamic of the doctor-patient relationship proposed here in its most genuine essence is effectively expressed in physician concrete attitudes that the patient usually captures and relates as the “the doctor’s way of being”. Goya's painting, Self-portrait with Dr Arrieta (1820), can be taken as an outstanding artistic representation of this expanded dimension of the medical act, capturing the “medical friendship” in action. (shrink)

Virtue theory in philosophical bioethics has influenced clinical ethics with depictions of the virtuous doctor or nurse. Comparatively little has been done with the concept of the virtuous patient, however. Bioethicists should correct the asymmetry in virtue theory between physician virtues and patient virtues in a way that provides a practical theory for the new patient-centered medicine—something clinicians and administrators can take seriously.

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these (...) two concepts can be combined or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)

Abstract“Patient-centred care” is the recent response to the malaise produced in the field of health care from the point of view both of a technical mentality and the paternalistic model. The interest in the story-telling approach shown by both the humanities and the social sciences has favoured a “narrative turn” in medicine too, where the new ethics of therapeutic relationship consider the hermeneutic method a means by which to integrate evidence and subjectivity, scientific data and patient experience. (...) The aim of this paper is to show how Ricoeur’s theory of “threefold mimesis” makes a conceptual contribution to the use of narrative interviews in nursing and also be successfully transferred into and applied in the field of healthcare in general. First, the paper examines how this narrative approach might open up new possibilities for the acquisition of in-depth knowledge of patients’ life experiences, a condition indispensable for the improvement of the quality of care. Secondly, it highlights how this Ricoeurian method seems capable of provide an opportunity for healthcare professionals to review their own understanding of the caregiver-patient therapeutic relationship, beginning with their confrontation with the patient’s world as revealed by the narrative they provide. (shrink)

Although the patient’s right to decide what they want for themselves, which is encompassed in the notion of ‘patient-centred medicine’ and ‘informed consent’, is widely recognised and emphasised in Japan, there remain grave problems when it comes to respecting the wishes of the no-longer-competent when death is imminent. In general, it is believed that the concepts above do not include the right to refuse treatment when treatment withdrawal inevitably results in death, even when the patient previously (...) expressed the wish to exercise this right when competent. In this paper, I first explain the current social and legal situation in Japan, where the lack of legal clarity regarding the right to reject treatment tends to result in doctors adopting the interpretation of patients’ words that is least conducive to treatment withdrawal. I then argue that the right to refuse treatment should be taken seriously, even when the patient is no longer competent, or the treatment refusal will result in death. I suggest that the concept of relational autonomy might have some practical and valuable implications in a country where individual autonomy is considered incompatible with societal values. Finally, I answer possible objections to relational autonomy and address the widespread societal concern about sliding down the slippery slope from allowing the right to refuse treatment to the obligation to die. (shrink)

In this article, I defend the view that conscience exemption clauses for medical practitioners (doctors, nurses, technicians, pharmacists) should be limited by patient protection clauses. This view was also defended by Mark Wicclair, in his book on conscience exemptions in medicine (Cambridge UP, 2011). In this article, I defend Wicclair’s view by supplementing it with Hegelian ethical theory and feminist critical theory. Conscience exemptions are important to support as a matter of human rights. They support an individual’s right (...) to protect their deepest value-commitments. A true understanding of conscience is dialectical, however, and it requires patient protection clauses because they, too, protect individuals in their deepest value-commitments. In this article, I show that the defense of patient protection clauses is historically supported by the theory of “conscience [Gewissen]” developed by G.W.F. Hegel in the nineteenth century (mostly in the Phenomenology of Spirit (1807)). (shrink)

The more we know about medicine, the more we realize that many health questions have no one true answer. Realizing this, and thinking carefully about how medicine asks patients to treat their conditions, leads us to some questions. How reliable are the guidelines that might form the basis of doctors’ advice? Is it wrong, after all, to base an approach to medicine on patients’ preferences? And, given that there is often a distance between the treatment a doctor (...) advises and what a patient would like to do, how do we bridge the gap—especially in a health culture of inequality, technical proficiency, and increasing costs? In practical, engaging, narrative-driven chapters about common health conditions that millions of Americans are familiar with—depression and high blood pressure, arthritis and diabetes—Dr. Zackary Berger of Johns Hopkins demystifies the often bewildering disconnect between patients and doctors and asks us all to think more clearly about how best to protect and cure the human body. (shrink)

This article explores an example of person-centred care: the work of so-called renal care coordinators. The empirical basis of the article consists of qualitative interviews with renal care coordinators, alongside participant observations of their patient interactions. During the analyses of the empirical material, I found that that one of the coordinators’ most fundamental ambitions is to get to know who the patient is. This is also a central tenet of person-centred care. The aim of the article is not (...) only to argue for the plausibility of this tenet, but also, and more importantly, to highlight and explore its implications in the context of healthcare, through the example of renal care coordination. By drawing on the philosophy of Hannah Arendt, the article shows that the disclosure of who the patient is that takes place in person-centred care requires speech and action, which are modes of human activity that initiate processes characterized by unpredictability, uncertainty, and irreversibility. This unpredictability, uncertainty, and irreversibility, found to be inherent in person-centred care, is then discussed in relation to the pursuit of certainty characterizing contemporary evidence-based medicine. At the end of the article the conclusion is drawn that, if healthcare is to be person-centred, it must find ways of accommodating the contradictory pursuits of certainty and uncertainty found in evidence-based medicine and person-centred care respectively. (shrink)

Positive claims about narrative approaches to healthcare suggest they could have many benefits, including supporting person-centred healthcare (PCH). Narrative approaches have also been criticised, however, on both theoretical and practical grounds. In this paper we draw on epistemological work on narrative and knowledge to develop a conception of narrative that responds to these concerns. We make a case for understanding narratives as accounts of events in which the way each event is described as influenced by the ways other events in (...) the narrative are described. This view of narratives recognises that they can contribute knowledge of different kinds of connections between events: not just causal, and not just of patient’s perspectives. Additionally, narratives can add further epistemic value by suggesting potentially useful lines of inquiry. We take narrative approaches to healthcare to include clinicians considering both patients’ informational offerings and their own professional understandings as narratives. On this understanding, our account is able to overcome the major theoretical and practical criticisms that have been levelled against the use of narrative approaches in healthcare, and can help to explain why and how narrative approaches are consistent with PCH. (shrink)

Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? (...) Examples are drawn from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed. (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)

This paper questions the conventional wisdom that physicians must suppress anger in response to patient misbehaviour. It distinguishes the emotion of anger from its expression, which leans toward concerned frustration and disappointment for the sake of professionalism in patient care. Drawing on the framework of person-centred health care as a virtue ethic, the paper first suggests four reasons why and when physician anger toward patient behaviour may occasionally be appropriate: the inevitability of sometimes feeling angry, anger as (...) a cognitive and behavioural resource, physician well-being, and potential patient benefit. The paper then proposes five conditions under which physician anger displays may be prudent as a measured response that balances emotional expression with professional conduct: ethical intention, rational justification, proportionality, problem-focused constructive expression, and precision. Potential benefits of this conceptualization of prudent anger include improved physician wellbeing, enhanced communication, and patient education to address perceived patient misbehaviour. The paper advocates for a cultural shift in health care environments to help allow for more authentic expression of physician frustration, aiming to harness prudent anger as a catalyst for positive change in patient-physician relationships and systemic improvements in health care delivery. (shrink)

The healing and preventive powers of people's health resources and self-assessed knowledge have so far been grossly underestimated in medicine. In this article, we call attention to ethical and epistemological dilemmas related to knowledge, values, communication, and autonomy embedded in the prevailing risk-oriented epidemiology, and suggest a patient-centred salutogenetic approach to promote a better balance between resources and risks in medicine. Identification and intervention upon risk factors can provide hypotheses about origins of disease and predict and sometimes (...) prevent disease at a group level. However, there are several pitfalls related to this perspective concerning causal factors, group level based possibilities, adequate end points for intervention, informed consent, and medicalization, especially in the individualized context of the clinical encounter. By introducing a salutogenic perspective, we urge to shift the attention toward resources, agency and strength, which may counteract risk of disease and empower the patient. Talk can mediate oppression as well as empowerment. A communicative key question approach, and self-assessed health resources identified through this strategy, are briefly presented as examples of empowerment through dialogue. (shrink)

In the wake of the Russian invasion of Ukraine in February 2022, I found myself struggling with debilitating professional burnout as a physician assistant (PA) in emergency medicine. Despite initial fears and uncertainties, I chose to volunteer at a refugee center in Wroclaw, Poland, where I provided medical care to Ukrainian war victims. This experience proved to be a transformative journey, reigniting my passion for patient-centered care and addressing my burnout. Establishing a profound connection between medical care (...) and humanity reminded me of the reasons I entered the medical profession. Practicing medicine in a refugee center, free from the constraints of the healthcare business model, allowed me to reconnect with the core values of my profession. This experience underscored the therapeutic potential of volunteering as a means to combat professional burnout and fostered a renewed commitment to patient care upon my return home. In an era where clinician burnout is increasingly prevalent, this narrative explores the importance of rekindling one’s passion for medicine by returning to its fundamental purpose: compassionate, patient-centered care. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving practices. The contributions, (...) ranging from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (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)

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)

The topic of Ron Paterson’s book which was recently reviewed by Deborah Oyer only scratches the surface of a disturbing problem that is not confined to medicine, as health care delivery is a multidisciplinary experience for patients. I hear stories from patients about bullying dieticians, callous nurses, and institutions that espouse patient-centred care yet fail to deliver it to individuals who are unwell, worried, and vulnerable in an unfamiliar environment into which they have come for help. Maybe being (...) conversant with standard guidelines and care pathways for specific health conditions makes it too easy forget that, for individual patients, ill health is a unique experience within their life-world. It could and should be our default approach as clinicians (and ancillary personnel) to acknowledge the fundamental competence that patients bring to health service encounters and to help them comprehend their options and the ramifications of their preferences within their life-world. Unl. (shrink)

In 2021 and 2022, researchers carried out an implementation trial that considered how the capsule sponge test might be used to screen for Barrett’s oesophagus using a mobile clinic in East Anglia. This paper offers insights from 15 months of ethnographic fieldwork studying the trial. It aims to highlight the value of the test in offering reassurance to worried patients, particularly to those with a family history of oesophageal adenocarcinoma. It also considers the variety of aims people held for the (...) capsule sponge test, including the hope that it would address their symptoms of acid reflux, and the conflict that sometimes emerged as a result. The second half of the paper uses fieldwork carried out in virtual support groups for people with Barrett’s oesophagus to explore experiences postdiagnosis, which sometimes were defined by fear of future cancers. It describes notable differences between the care offered to people with morphological risk conditions like Barrett’s oesophagus and the care given to those with genetic risk conditions, including the provision of genetic counselling. More broadly, the paper highlights a tension between patient-centred and risk-centred medicine that is likely to grow as healthcare services continue to shift towards preventative approaches. (shrink)

In this paper, I argue that patient preferences concerning human physical attributes associated with race, culture, and gender should be excluded from public healthcare robot design. On one hand, healthcare should be (objective, universal) needs oriented. On the other hand, patient well-being (the aim of healthcare) is, in concrete ways, tied to preferences, as is patient satisfaction (a core WHO value). The shift toward patient-centered healthcare places patient preferences into the spotlight. Accordingly, the design (...) of healthcare technology cannot simply disregard patient preferences, even those which are potentially morally problematic. A method for handling these at the design level is thus imperative. By way of uncontroversial starting points, I argue that the priority of the public healthcare system is the fulfillment of patients’ therapeutic needs, among which certain potentially morally problematic preferences may be counted. There are further ethical considerations, however, which, taken together, suggest that the potential benefits of upholding these preferences are outweighed by the potential harms. (shrink)

The notion that the family is the unit of care for family doctors has been enigmatic and controversial. Yet systems theory and the biopsychosocial model that results when it is imported into medicine make the family system an indispensable and important component of family medicine. The challenge, therefore, is to provide a coherent, plausible account of the role of the family in family practice. Through an extended case presentation and commentary, we elaborate two views of the family in (...) family medicine — treating the patient in the family and treating the family in the patient — and defend both as appropriate foci for care by family doctors. The practical problem that arises when the family is introduced into health care is deciding when to concentrate on the family system. The moral problems that arise concern how extensively doctors may become involved in the personal lives of their patients and families. The patient-centered clinical method provides a strategy for handling both problems. Thus, making the family a focus of care in family medicine can be justified on theoretical, practical, and moral grounds. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic (...) and health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

In 2013, in accordance with a provision in the Patient Protection and Affordable Care Act, the U.S. government began fining hospitals with “excessive” patient readmission rates. Those working to respond to this issue have identified discharge communication with patients as a critical component. In response to this exigency and to contribute to the conversation in the medical humanities about the field’s purview and orientation, this article analyzes studies of and texts about communication in health and medicine, ultimately (...) arguing that the on-going circulation of compliance rhetoric and assumptions has limited efforts to improve patient communication. The article, furthermore, considers that humanist ideals of agentic action, the patient-centered care movement’s emphasis on the patient, and biomedicine’s tendency to treat evidence-based knowledge as fixed and given may have combined to support a rationale for using patient adherence to treatment guidelines as metrics in measurement studies designed to identify effective communication strategies. Finally, the article proposes that those working in the medical humanities consider the value of interdisciplinary posthumanist scholarship—specifically, its treatment of agency and knowledge as emergent, distributed, and contingent—and its potential to transform or extend in productive ways the conversation about what constitutes effective communication with patients. (shrink)

In this paper we argue that the responsibility for systematic community-based preventive medicine should not be made part of the role of the general practitioner (GP). Preventive medicine cannot be shown to be more effective than curative or supportive medicine. Therefore, the allocation of the large amount of general practice staff time and resources required for systematic preventive medicine should not come at the expense of the care of the sick and the suffering. The traditional healing (...) role of the GP requires a cooperative patient-centred approach, whereas systematic preventive medicine is driven by rigid pre-set protocols and is intrinsically paternalistic. Trying to merge the two approaches is detrimental to the doctor-patient relationship. Furthermore, a number of potential pitfalls are identified that may be encountered in the implementation of preventive medicine programmes in general practice: interference with the course of the consultation; inadequate explanation and consent; distortion of practice priorities as reflected in quality indicators; temptation to record inaccurate data; conflict of interests where the doctor is rewarded for performance; patient blaming; exacerbation of the health gap. We suggest that a more justifiable strategy would be for GPs to identify patients at high risk and offer them specific preventive advice when the opportunity presents itself and at a time when the patient is likely to be most amenable to cooperate. Opportunistic health promotion offers higher expectations of benefit, as well as a more equitable allocation of the risks associated with preventive medicine, than a systematic community-based approach. (shrink)