Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled patients (...) may also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

The ethical pre-condition of randomised controlled trials is, at present, the presence of equipoise. This refers to an opinion of the investigator that there is uncertainty as to the merits of the treatments being compared. It is argued that since the decision to enrol is the potential subject’s, the investigator’s opinion is not ethically relevant. It is proposed instead that equipoise be patient-centred, and that a trial is in equipoise for a patient when enrolling gives them the same (...) chance of a good outcome as not enrolling. It is shown that trial enrolment is normally easily the best strategy for achieving a good outcome, and that trials currently thought to be unethical may be in patient-centred equipoise. This is so for three reasons: (1) patients in trials receive superior care, (2) trial enrolment minimises the risk of being a victim of a therapeutic disaster and (3) health professionals make mistakes, and a 50% chance of receiving the worse treatment until a trial reports is always better than any chance of receiving the worse treatment indefinitely. It is concluded that so long as the standard of professional conduct is the furtherance of patients’ objective interests randomised controlled trials are ethical. (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.

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics (...) over several decades. It finds that four models of patient-centered care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (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.

The Danish health care sector currently undergoes changes that imply a gradual transition from an evidence‐based activity model to a value‐based quality model centered on patient involvement and value‐based governance. The patient naturally occupies a central position in health care, and the transition therefore raises important questions about health care quality and how successive national health quality strategies value quality and ascribe roles and agency to patients. To explore the complexity (...) of these quality strategies, we analyze and discuss how political discourse moments influence the contents of the national health quality strategies and how variation in the construal of patient roles and agency indicates discursive struggle in Danish national health care policy. Underlying theoretical concepts are informed by New Public Management, the welfare state, health communication, and discourse theory. Our analytical approach is inspired by Critical Discourse Analysis and combines content analysis with linguistic analysis. (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.

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the (...) article, different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (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)

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)

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

We discuss the role of prior authorization (PA) in supporting patient-centered care (PCC) by directing health system resources and thus the ability to better meet the needs of individual patients. We begin with an account of PCC as a standard that should be aimed for in patient care. In order to achieve widespread PCC, appropriate resource management is essential in a healthcare system. This brings us to PA, and we present an idealized view of (...) PA in order to argue how at its best, it can contribute to the provision of PCC. PA is a means of cost saving and as such it has mixed success. The example of the US demonstrates how implementation of PA has increased health inequalities whereas best practice has the potential to reduce them. In contrast, systems of universal coverage, like those in Europe, may use the cost savings of PA to better address individuals' care and PCC. The conclusion we offer therefore is an optimistic one, pointing towards areas of supportive overlap between PCC and PA where usually the incongruities are most evident. (shrink)

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since patients guide care in patient-centered care, and respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes (...) more coherent, is strengthened, and could help practitioners to make better use of a principle of respect for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (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 (...) class='Hi'>patient-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)

Shared decision-making involves health professionals and patients/clients working together to achieve true person-centred health care. However, this goal is infrequently realized, and most barriers are unknown. Discussion between philosophers, clinicians, and researchers can assist in confronting the epistemic and moral basis of health care, with benefits to all. The aim of this paper is to describe what shared decision-making is, discuss its necessary conditions, and develop a definition that can be used in practice to support (...) excellence in maternity care. Discussion between the authors, with backgrounds in philosophy, clinical maternity care, health care management, and maternity care research, assisted the team to confront established norms in maternity care and challenge the epistemic and moral basis of decision-making for caesarean section. The team concluded that shared decision-making must start in pregnancy and continue throughout labour and birth, with equality in discourse facilitated by the clinician. Clinicians have a duty of care for the adequacy of women's knowledge, which can only be fulfilled when relevant knowledge is offered freely and when personal beliefs and biases that may impinge on decision-making (defeaters) are disclosed. Informed consent is not shared decision-making. Key barriers include existing cultural norms of “the doctor knows best” and “patient acquiescence” that prevent defeaters being acknowledged and discussed and can lead to legal challenges, overuse of medical intervention and, in some areas, obstetric violence. Shared decision-making in maternity care can thus be defined as an enquiry by clinician and expectant woman aimed at deciding upon a course of care or none, which takes the form of a dialogue within which the clinician fulfils their duty of care to the client's knowledge by making available their complete knowledge (based on all types of evidence) and expertise, including an exposition of any relevant and recognized potential defeaters. Research to develop measurement tools is required. (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)

Background For a variety of sociological reasons, different types of centredness have become important in health and social care. In trying to characterize one type of centredness, we were led to consider, at a conceptual level, the importance of the notion of centredness in general and the reasons for there being different types of centeredness. Method We searched the literature for papers on client-, family-, patient-, person- and relationship- centred care. We identified reviews or papers that (...) defined or discussed the notions at a conceptual level. The reviews and papers were analyzed as text transcripts. Results We identified 10 themes that were common to all the types of centredness. At a conceptual level we could not identify thematic differences between the types of centredness. These findings were subjected to a philosophical critique using ideas derived from Wittgenstein. Conclusion Different types of centredness are required in different contexts. The differences are justified by their practical utility. The unifying themes of centredness, however, reflect a movement in favour of increasing the social, psychological, cultural and ethical sensitivity of our human encounters. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use (...) of insights from the capabilities approach to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

Since the 1970’s epidemiological measures focusing on “health-related quality of life” or simply “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known, generically, as performance measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. In the early 2000’s they were relabeled again as “patient-reported outcome measures” or PROMs, in their service to the FDA to support drug labeling claims. To (...) the limited degree that the philosophical literature addresses these measures, it tends to associate them with two major theories of well-being: subjective well-being and the capabilities approach. In this paper, I argue that philosophers ought to treat quality of life measures/proms as a distinct from these theories. I argue that quality of life/proms serve healthcare as vehicles for patient-centered care and this has important consequences for how we theorize these measures. To this end, two requirements set them apart from measures of subjective well-being and the capabilities approach: quality of life/proms need to be patient-directed and inclusive. (shrink)

Digital health includes applications for smartphones and smart speakers as well as more traditional ways to access health information electronically, such as through your health care provider's online web‐based patient portal. As the number of digital health offerings—such as smartphone health trackers and web‐based patient portals—grows, what benefit do ethics, or bioethics, perspectives bring to digital health product development? For starters, the field of bioethics is concerned about issues of social justice, (...) including equitable benefit and minimization and fair distribution of the burden of harms. Researchers who employ user‐centered design methods should consider what digital health applications and products would look like if issues like equity and accessibility were foregrounded throughout design and development. One group whose needs are often neglected in the design of digital health products is older adults. Many people anticipate that the digital divide among older adults will close as the current generation of tech‐savvy consumers ages up. But since technology is constantly evolving, this divide may be constantly recreated. As bioethics moves ever further into the technology era, I want it to be mindful of the creation of digital health care disparities. (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)

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)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best (...) interests of children. Such models of health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

One of the most basic understandings of nursing is that a nurse is a caregiver for a patient who helps to prevent illness, treat health conditions, and manage the physical needs of patients. Nursing is often presented as a caring profession, which provides patient care driven by ideals of empathy, compassion and kindness. These ideals of care have further been foregrounded through the development and implementation of stress on patient centred care (PCC) and/or (...) person‐centred practice (PCP). Although the idealisation of nursing as a caring profession is common, and one certainly seen as integral by nurses and written into the heart of regulatory documentation, we contend that the actual delivery of care is being undercut by the very regulatory climate that strives to professionalise care. As we outline, with specific reference to the context of Australian Nursing, this transformation delivers a commodified, even McDonaldized, model of patient management rather than care. It seems that even with its explicit stress on PCC and PCP, Australian Nursing cannot live up to its own care ideals. Having outlined this problem, the paper then demonstrates the ways in which PCC is thwarted at the coal face of nursing practice and that there must be an institutionalised change to be able to provide genuine patient‐centred care. (shrink)

Americans' appetite for life-prolonging therapies has led to unsustainable growth in health care costs. It is tempting to target older people for health care rationing based on their disproportionate use of health care resources and lifespan already lived, but aged-based rationing is unacceptable to many. Systems reforms can improve the efficiency of health care and may lessen pressure to ration services, but difficult choices still must be made to limit expensive, marginally beneficial (...) interventions. In the absence of agreement on principles to govern health care resource allocation, a fair, open priority-setting process should be created to allow for reasonable disagreement on principles while being seen as legitimate by all stakeholders. At the patient-care level, careful discussions about the benefits and burdens of medical intervention and support for slow medicine — a gentle, family-centered care approach for frail elders — can do much to avoid harming these patients with aggressive yet unwanted medical care while reducing wasteful spending. (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 (...) 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)

The Institute of Medicine reporting on the quality of health care in America recommends six aims for achieving the health care system we could have. Together with the Institute for Healthcare Improvement Triple Aim initiative, a framework has emerged to challenge providers, educators, and policymakers to remake the health care system according to specific objectives: to provide care that is safe, effective, patient-centered, timely, efficient, and equitable to more people at a (...) price we can afford. Complicating this mission of better prevention and better care at a lower cost is a daunting demographic: January of 2011 marked the month and year that the first of the baby boomers turned 65. The U.S. Census Bureau in May 2010 projected the number of Americans of this age and over to reach 88 million by 2050, more than double the current figure of 40.2 million. Parekh and Barton forecast in stark detail what it will be like to address these burgeoning numbers of older Americans with comorbidities, including the fact that over 20% of the population currently experiences at least two chronic medical conditions. (shrink)

Systematically improving patient safety is of the utmost importance, but it is also an extremely complex and challenging task. This illuminating study evaluates the role of professionalism, regulation and law in seeking to improve safety, arguing that the 'medical dominance' model is ill-suited to this aim, which instead requires a patient-centred vision of professionalism. It brings together literatures on professions, regulation and trust, while examining the different legal mechanisms for responding to patient safety events. Oliver Quick includes (...) an examination in areas of law which have received little attention in this context, such as health and safety law, and coronial law, and contends in particular that the active involvement of patients in their own treatment is fundamental to ensuring their safety. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use (...) of insights from the capabilities approach to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (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)

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 (...) class='Hi'>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)

Patient‐centred care has gained ground in health service following a health policy initiative aimed at changing the paternalistic culture towards one with more patient involvement. Development of knowledge relating to people's lived experiences of illness is important in this context. Literature in the field of health science describes methods for exploring what is at stake for people affected by illness, and the French philosopher Paul Ricoeur has been a significant source of inspiration. Especially, Ricoeur's (...) interpretation theory has been construed and applied in different, often schematic, methodological variations, whereas his narrative philosophy is a little used source of inspiration. Health science has been characterized by a biomedical awareness of method and the idea that there is a direct and immediate path to patients' experiences, a viewpoint that can be traced back to Descartes and the philosophy of subjectivism. Opposed to Descartes, Ricoeur says that we are already embedded in a world of traditions and meanings over which we have no control. According to Ricoeur, we leave traces when we express ourselves, and traces are formed by the world of meanings and traditions to which we belong. Often, the sense in the traces is hidden, making it impossible to directly understand individual's experiences. Reflection on an individual's lived experiences must take place via the narratives in which the individual expresses themselves. The centrepiece of Ricoeur's narrative philosophy is the threefold mimesis, which is an approach to understanding the meaning of peoples' lived experiences. The philosophical hermeneutics of Gadamer plays an important role in Ricoeur's theory of interpretation, although he has criticized Gadamer for failing to include one dimension in his philosophy; he finds this dimension in Habermas' ideology critique. Ricoeur's ideology critique is absent in health science research, which is why it has been made a focal point in this article. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best (...) interests of children. Such models of health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

This systematic review identified and evaluated instruments measuring patients' perceptions of patient‐centred nursing care. Of 2629 studies reviewed, 12 were eligible for inclusion. Four instruments were reported: The Individualized Care Scale, the Client‐Centred Care Questionnaire, the Oncology patients' Perceptions of the Quality of Nursing Care Scale and the Smoliner scale. These instruments cover themes addressing patient participation and the clinician–patient relationship. Instruments were shown to have satisfactory psychometric properties, although not all were adequately (...) assessed. More research is needed regarding test–retest reliability, convergent and discriminant validity, validity with known groups and structural validity using confirmatory factor analysis. (shrink)

This paper examines narrative approaches to care within the context of dementia. It reviews the function of stories and explores some of the narrative genres that shape the cultural perceptions of dementia. We argue that narrative intelligence within healthcare is an important element in nurturing communal self‐identity for people living with dementia. Listening and responding to stories and the cultural framework that this encompasses is an embodied action that is not just related to cognitive recall but situates us within (...) a cultural community. People with dementia may have challenges in maintaining narrative legitimacy in the face of fractured stories and incoherent narratives. Health professionals can offer support in reframing and presenting counterstories that maintain identities that can potentially be marginalised, silenced and open to narrative foreclosure. This process requires health professionals to be attentive and responsive to how patients with dementia and their supporters construct and position the stories they tell and the meaning(s) they attach to them. (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)

VAN MOSSEL C, ALFORD M and WATSON H. Nursing Inquiry 2011; 18: 278–289 Challenges of patient‐centred care: practice or rhetoric.

This discussion paper aims to explore potential ethical and moral implications of (patient) centredness in nursing and healthcare. Healthcare is experiencing a philosophical shift from a perspective where the health professional is positioned as the expert to one that re‐centres care and service provision central to the needs and desires of the persons served. This centred approach to healthcare delivery has gained a moral authority as the right thing to do. However, little attention has been given to (...) its moral and ethical theoretical grounding and potential implications for nurses, persons served and the healthcare system. Based upon a review of academic and grey literature, centredness is proposed as a value‐laden concept in nursing inquiry. Potential moral and ethical implications of centredness on nurses/healthcare providers, persons served and the healthcare system are discussed. These challenges are then considered within the context of normative and relational ethical theories. These perspectives may offer guidance relative to how one should act in those circumstances as well as an understanding as to how interdependency and engagement with the other person(s) can help navigate the challenges of a centred care approach. Viewing centredness through an ethical theoretical lens provides a valuable discourse to nursing in efforts to expand the knowledge base and integrate centred approaches into practice and policy. (shrink)

In this paper, I examine the rhetoric employed by court judgements, with a particular emphasis on the narrative construct of the ‘passive patient’. This construction advances and reinforces paternalistic values, which have scant regard for the patients’ preferences, values, or choices within the legal context. Further, I critique the rhetoric employed and argue that the use of this rhetoric is the basis for a precedent that limits the understanding and respect of patients. Through this paper, I present the contemporary (...) use of the ‘passive patient’ construct in the context of the Indian legal system and describe how such constructions have become a source of normative justification for legal reasoning that jeopardizes the patient’s agency. I argue for the primacy of ‘respect for persons’ within Indian law and the need to treat each patient as a person who has agency, preferences, and values during clinical interactions. I conclude by suggesting that laws that adopt narratives that acknowledging the significance of patient engagement and the relevance of effective communication during clinical encounters would help cultivate a culture of patient-centred care, by moving beyond the rhetoric of ‘passive patient’ and the ‘health/choice’ dichotomy. (shrink)

We describe the teaching programme in ethics, law and communication skills for clinical medical students which is being developed as part of the Oxford Practice Skills Project. These three elements of practice are approached in an integrated teaching programme which aims to address everyday clinical practice. The role of a central value of patient-centred health care in guiding the teaching is described. Although the final aim of the teaching is to improve actual practice, we have found three (...) 'sub-aims' helpful in the development of the programme. These sub-aims are: increasing students' awareness of ethical issues; enhancing their analytical thinking skills, and teaching specific knowledge. (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)

Most mental health research largely ignores or minimises gender and age differences in depression. In ‘Don't mind the gap: Why do we not care about the gender gap in mental health?’, Patalay and Demkowicz identify a dearth of research on the causal factors of depression in young women. They attribute this to an over-reliance on biological accounts of gender differences in depression. Patalay and Demkowicz conclude that a person-centred approach that meaningfully engages with the reports of young (...) women with depression is more likely to expose the social drivers of depression that impact this group. This commentary focuses on Patalay and Demkowicz's call to examine the patient's lived experience. We argue that there is an urgent need to reflect upon the methodologies involved in examining lived experience and how they can be best utilised. Ultimately, we advocate for an approach known as ‘phenomenological psychopathology’, through a phenomenological investigation of depression in young women, we can go some way towards closing the gender gap. (shrink)

Edmund Pellegrino has pioneered work in medical ethics calling for a reconstruction of Hippocratic ethics. In particular, he has spoken of incorporating principles that concern justice and the common good. This article traces his commitment to the common good, concern for the poor, opposition to libertarianism, acknowledgement of the necessity of rationing, and reluctance to give clinicians social allocational tasks. It asks how Pellegrino relates distributive justice to the common good. Drawing on his theory relating autonomy to patient-centered (...) beneficence (in which autonomy is one element of the good rather than a side constraint on the good), the author argues that Pellegrino appears to make justice one element of the common good rather than a distributional moral constraint on promoting the good. He suggests that Pellegrino stands in three consequentialist or teleological moral traditions: professional physician ethics, Aristotelianism, and Catholic moral theology, but that there are the makings of a more independent, more egalitarian theory of justice in his writings. Keywords: autonomy, common good, consequentialism, Edmund Pellegrino, justice CiteULike Connotea Del.icio.us What's this? (shrink)

Obese people consume significantly greater amounts of health resources. This study set out to determine if health resource utilization by obese people decreases after losing weight in a comprehensive medically supervized weight management programme. Four hundred and fifty-six patients enrolled in a single-centred, multifaceted weight loss programme in a universal health care system were studied. Patient information was anonymously linked with administrative databases to measure health resource utilization for 1 year before and after the (...) programme. Mean body mass index (BMI) decreased by more than 15%. The mean annual physician visits (pre = 9.6, post = 9.4) did not change significantly after the programme. However, patients saw a significantly fewer number of different physicians per year following the programme (pre = 4.5, post = 3.9; P < 0.001). Mean annual number of emergency visits (pre = 0.2; post = 0.2) and hospital admissions (pre = 0.05; post = 0.08) did not change. Neither baseline BMI, nor its change during the programme, influenced changes in health resource utilization. Our study suggests that weight loss in a supervized weight management programme does not necessarily decrease short-term health resource utilization. Further study is required to determine if patients who maintain their weight loss experience a decrease in health utilization. (shrink)