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)

Clinical Ethics, Ahead of Print. It could hardly be denied that healthcare should be patient-centred. However, some of the practices commonly described as patient-centred care may have ethically problematic consequences. This article identifies and discusses twelve ethical conflicts that may arise in the application of person-centred care. The conflicts concern e.g. privacy, autonomous decision-making, safeguarding medical quality, and maintaining professional egalitarianism as well as equality in care. Awareness of these potential conflicts can be helpful in finding the best (...) way to ensure that healthcare has its focus on the needs and interests of the patients. Patient-centred care may have to take different forms, depending of the nature of the disease, the patient’s life situation, and the economic, organizational and technological resources available to the healthcare unit. (shrink)

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

Perkin and Resnik advocate the use of muscle relaxants to prevent the “agony of agonal respiration” arguing that this is compatible with the principle of double effect. The proposed regime will kill patients as certainly as smothering them would. This may lead some people to reject the argument as an abuse of the principle of double effect. I take a different view. In the absence of an adequate theory of intention, the principle of double effect cannot distinguish between the intentional (...) and merely foreseen termination of life, and cannot rule out end-of-life decisions that are often regarded as impermissible.What Perkin and Resnik are in effect saying is that there are times when physicians have good reasons to end a patient’s life—deliberately and intentionally—for the patient’s sake. Why not say so—instead of going through the agony of trying to match sanctity of life and patient-centred medical care? (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)

This paper examines the power relations in “patient-centred communication”. Drawing on the work of Michel Foucault I argue that while patient-centred communication frees the patient from particular aspects of medical power, it also introduces the patient to new power relations. The paper uses a Foucauldian analysis of power to argue that patient-centred communication introduces a new dynamic of power relations to the medical encounter, entangling and producing the patient to participate in the medical encounter (...) in a particular manner. (shrink)

Background There is increasing use of the Internet by patients as an educational tool prior to a surgical procedure. However, the quality of information is highly variable, and it is imperative that as clinicians, we are aware of the information available to ensure that consent is valid and avoid unrealistic expectations. Our aim is to assess the quality of medical information available on the Internet related to common surgical procedures. Methods Analysis of the quality of patient information on 10 (...) websites for six common surgical conditions ( n = 54 following exclusions) was assessed using the DISCERN questionnaire and, for readability, using the Flesch reading ease test. Results There was high variation in the DISCERN score from 1.34 to 4.4 (mean 2.75). Overall, poor quality of patient information is available. Consistent scoring below 55 on Flesch reading ease score suggests a reading level beyond the majority of the patient population. Conclusion The majority of patient-centred health education on the Internet is poor. Therefore, improved verbal and written information during consultation combined with local, national and international websites is important to meet patient’s expectations and avoid issues regarding consent. (shrink)

BackgroundThe public and healthcare workers have a high expectation of animal research which they perceive as necessary to predict the safety and efficacy of drugs before testing in clinical trials. However, the expectation is not always realised and there is evidence that the research often fails to stand up to scientific scrutiny and its 'predictive value' is either weak or absent.DiscussionProblems with the use of animals as models of humans arise from a variety of biases and systemic failures including: 1) (...) bias and poor practice in research methodology and data analysis ; 2) lack of transparency in scientific assessment and regulation of the research; 3) long-term denial of weaknesses in cross-species translation; 4) profit-driven motives overriding patient interests; 5) lack of accountability of expenditure on animal research; 6) reductionist-materialism in science which tends to dictate scientific inquiry and control the direction of funding in biomedical research.SummaryBias in animal research needs to be addressed before medical research and healthcare decision-making can be more evidence-based. Research funding may be misdirected on studying 'disease mechanisms' in animals that cannot be replicated outside tightly controlled laboratory conditions, and without sufficient critical evaluation animal research may divert attention away from avenues of research that hold promise for human health. The potential for harm to patients and trial volunteers from reliance on biased animal data1 requires measures to improve its conduct, regulation and analysis. This article draws attention to a few of the many forms of bias in animal research that have come to light in the last decade and offers a strategy incorporating ten recommendations stated at the end of each section on bias. The proposals need development through open debate and subsequent rigorous implementation so that reviewers may determine the value of animal research to human health. The 10Rs + are protected by a Creative Commons Attribution 3.0 Unported License and therefore may be 'shared, remixed or built on, even commercially, so long as attributed by giving appropriate credit with a link to the license, and indicate if changes were made.’. (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.

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.

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)

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)

Bioethics mediation training offers knowledge and skills valuable for clinical ethics consultants who are engaged in high conflict situations. Furthermore, clinicians with this training can support organizational efforts to create a culture that is centered on the values, needs, and care preferences of patients and their families, rather than on those of the clinician or organization. Patientcenteredness is a hallmark of quality and an essential component for patients’ safety. Clinicians with mediation training have the communication skills to address the (...) myriad needs of patients and their loved ones, needs that are challenging to meet in inpatient hospital settings. The author illustrates principles of mediation such as validating patients’ emotions, revealing the interests of all stakeholders, and shaping a shared solution to demonstrate how these skills have broad applicability in patient care settings. (shrink)

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

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)

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)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced (...) by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (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.

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)

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 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)

S. Matthew Liao and Christian Barry argue that the patient-centered approach to deontology that I have developed—the restricting claims principle —‘is beset with problems.’ They think that it cannot correctly handle cases in which a potential victim sits in the path of an agent doing what she needs to do for some greater good, or in which a person’s property is used to benefit others and harm her. They argue that cases in which an agent does what would (...) be permissible but acts on a malicious reason show that agent intentions, rather than patientclaims, are fundamental to deontology. And they claim that the RCP presupposes the means principle in a way that shows that it is not really offering anything new. I argue here that all of these charges are mistaken. Doing so allows me to offer important refinements to the RCP, to highlight two common mistakes in reasoning about cases, and to set challenges for agentcentered approaches to deontology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar reasons (...) without any conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (shrink)

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)

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)

This article illustrates how a collaborative research process can successfully engage an underserved minority community to address health disparities. Pacific Islanders, including the Marshallese, are one of the fastest growing US populations. They face significant health disparities, including extremely high rates of type 2 diabetes. This article describes the engagement process of designing patient‐centered outcomes research with Marshallese stakeholders, highlighting the specific influences of their input on a randomized control trial to address diabetes. Over 18 months, an interdisciplinary (...) research team used community‐based participatory principles to conduct patient‐engaged outcomes research that involved 31 stakeholders in all aspects of research design, from defining the research question to making decisions about budgets and staffing. This required academic researcher flexibility, but yielded a design linking scientific methodology with community wisdom. (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)

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)

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)

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)

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)

Many clinical ethics support services do not involve patients. This is surprising because of the broad commitment to provide patient-centered healthcare. Clinical ethics support services are a component of the healthcare system and have an influence on patient care, and should therefore align with the regulatory and ethical requirements of patient-centered care, just process and cultural competence. First, in order to achieve good patient care, it is essential to involve patients in making their own (...) healthcare decisions. Second, just ethical deliberation requires that the deliberating parties have access to complete, accurate and unbiased information – this is best achieved through direct patient input. These arguments are especially compelling in the case of non-dominant cultural and ethnic groups. Here, we argue that when a clinician refers a case to a clinical ethics support services for consideration, and that case involves a conflict between the views or values of the clinician and the patient, the patient is entitled to, at a minimum: (a) be informed of the referral; (b) have the opportunity to speak directly to the clinical ethics support services prior to deliberation; (c) be provided with any opinion directly from the clinical ethics support services; and (d) have the opportunity to speak to a clinical ethics support services member after the deliberation. We use New Zealand as a case study to support and extrapolate the ethical principles and the minimum patient involvement requirements. We draw on our empirical research with senior doctors at a tertiary New Zealand hospital. Clinicians in our study indicated that they would feel bound by clinical ethics support service advice and that the clinical ethics support service has a significant impact on patient care in the case it reviews. (shrink)

The ideal moral standard for surgical informed‐consent calls upon surgeons to carry out a disclosure dialogue with patients so they have as full as possible an understanding of the procedure before they sign the informed‐consent form. This study is the first to empirically explore patient preferences regarding disclosure dialogue. Twelve Israelis who underwent life‐saving surgeries participated in a narrative study. Three themes emerged from the analysis: objectification of patients, anxiety provoking processes and information, and lack of information that was (...) essential for patients. Findings contribute to existing debates among surgeons regarding the scope and importance of some disclosure components. Analysis led to our formulation of an augmented subjective model of information disclosure that participants prefer, which extends beyond the immediate present of the surgery to the period after discharge, and until return to routine. Surgeons should be aware of patient preferences in disclosure, and gaps between perceptions of surgeons, and preferences and needs of patients. (shrink)

Background Social justice is recognized by reputable international organizations as a professional nursing value. However, there are serious doubts as to whether it is embodied in Catalan nursing education. Objectives To explore what nursing students take away from two teaching activities led by expert patients (one presentation and three expert patient illness narratives) on the topics of social justice, patient rights, and person-centered care. Research design Qualitative study using a content analysis approach. The research plan included (1) (...) think-pair-share activities (additional faculty-assisted presentation and three faculty-assisted, semi-structured scripted narratives); (2) paired reflections; (3) focus groups; and (4) content analysis of paired reflections and focus groups. Participants and research context Fourth-year nursing degree students at the Autonomous University of Barcelona (UAB), Spain. Convenience sampling was used. Ethical considerations The UAB Research Ethics Committee did not deem it necessary to apply any specific measures. We fully explained to patients that they could decide what medical information they would share with the students that was relevant to their learning, and we provided students with guidelines about patient confidentiality, dignity, and respect. Findings/results The students engaged in reflection about their education (recognizing that it had been centered on the professional and not the patient) and their relationship with the patient, in which they reproduced low-involvement patient care by modeling behaviors of their nurse educator. Moreover, they valued a person-centered care model with an emphasis on the emotional part but left out decision-making as an individual right of people. Conclusions The think-pair-share activities were useful to spark self-reflection among students, who identified aspects to change in their own practice, and reflected about their own education process, both of which promote change. (shrink)